Lewis William-A Preemie Miracle

We have a graduate!

2011-12-08T14:19:00.000-05:00

We have a Eating School graduate in the house! WooHoo!!

We are home, and am I loving the fact that I can relax in my pjs drink my coffee and just veg out on the couch. Lewis didn't skip a beat when he got home, and got all of his cars back in line on the entertainment center. He loves the Christmas tree, and thinks its just the best when we turn the lights on at night. I have a date with the blender today, and am making purees and freezing them for the next couple of weeks. Lewis went back to school today, and had a great day! He was a little unsure at first, but got right back into the swing of things. He took 3 licks of applesauce at lunch, but kept asking for cheese. Pureed cheese on the menu next? :0)

When I picked him up he ran and jumped into my arms, and said "I am so happy to see you!" He melts my heart!

We are SO happy to be home!

Let the Holiday season begin!

Feeding Journey-The next steps....

2011-12-05T21:17:00.000-05:00

I can't believe I am sitting here typing out this post with our entire room at the house packed up, and tomorrow is our last day of feeding therapy. It seems it took us forever to get here, and it just flew by in a snap! I couldn't be more grateful for our amazing experience, and for how bright our future is looking.

Lewis has been completely gtube free since Thanksgiving! He is up to taking around 30 new foods! Bless the Lord! He is doing amazing..scratch that..he is doing AMAZINGLY WONDERFUL..and we couldn't be more proud of him.
Once he got over his fear of food and being touched on his face, he just took off. We finished the program in 6 weeks, which is just incredible from where he started. Who knew so much change could happen in just a short time! Along with myself, grandma, and daddy are all trained feeders, his school is completely on board and now it is just time to start our life. Feeding him is really time consuming, following the protocol is intensive, making his purees is hard work, getting criticisms on our feeding skills is scary, feeding him in public is stressful...BUT we wouldn't have it any other way!

We still have a long ways to go with his oral eating. He still is having difficulty with moving his tongue, and any type of chewing or swallowing any type of thick texture or table food. He is still on a squeeze bottle for his drink that I am squeezing for him. We will be going back for followups for the next year. However, we have a great start and we have every bit of faith in him that in a year he will be feeding himself his happy meal!

Tomorrow is our last day, and his graduation party at the clinic. Pretty sure the tears will be flowing! How do I possibly even start to thank a group of amazing therapist and staff, that literally have made our dreams come true. I could give them every star in the sky, and it would still not be enough. They are miracle workers! We feel just so completely blessed to be apart of this amazing program, and to consider his therapists apart of our lives.

Can't imagine Wednesday waking up and not going to therapy and seeing everyone that day.

As happy as I am to get back to home, get Lewis back to school, and get back to a routine. I am going to miss alot of things about our journey in Grand Rapids.
*The Ronald McDonald House has been so gracious to us, and we are so thankful for everything they have done for us. It was so nice to come home to a warm comforting home, and knowing that others were celebrating in our journey with us. I am going to miss the smiles that came every day when we walked into the door, cheering us on our journey.
*The house has amazing volunteers who cook us dinners, breakfasts, and the best cookies. Definitely am going to miss the cookies!
*Really going to miss not having to do dishes! :0)
*I am going to miss the wonderful volunteers at the feeding clinic. There is a lady who comes in to volunteer almost every day, Mrs. Martha, and Lewis just fell in love with her. She was so patient and loving with him, and just cared about us so much. OK just started crying just thinking of having to say goodbye to her tomorrow. Lewis calls her, my Martha, and I am sure will never forget her.
*I will miss the moms of the program! I have became great friends with some amazing ladies, who are inspirations to me. It is so nice to have a group of moms who just get what you are going through, and are celebrating every bite and drink right along with you. I have left this journey with some AMAZING friendships that I know will last a lifetime. They are just absolutely incredible moms!
*I am going to miss just me and Lewis time. Even though days he just drove me nuts, we really became each others support system. I am going to miss our little giggles together, our snuggle times at night, and just the awesome bonding time we've had together. He really is the love and light of my life!

I can't believe we did it!

I am so proud, so happy, and so excited for this new journey in our lives!

The best feeding friends a kid could ask for! AMAZING kiddos!

He loves to do playdough!

Reading books with "my Martha"

First Thanksgiving meal!

The house decorated for Christmas. Lewis was always so excited to see the Santa, lights, and trees.

Feeding Journey-New Foods and Brushing

2011-11-08T21:44:00.000-05:00

It is only two days into the week, and Lewis has already successfully tried applesauce, sweet potatoes, and green bean purees. He wasn't too fond of the green beans, but absolutely loved the applesauce.

At clinic we have been working really hard on him accepting a toothbrush into his mouth and brushing his teeth, and today was my turn to give it a try with the therapist. He did so well for me, that they sent me home packing with his toothbrush and paste. I gave it a run tonight at the house, and he opened so big for me and we brushed his teeth while singing Twinkle Twinkle Little Star. After the song was done, he told me "More teeth brushing!!!" in the most happiest little voice. It broke my heart, and I cried.

I couldn't be happier.

This is truly an emotional ride!

Feeding Journey-Week 2

2011-11-06T21:53:00.000-05:00

Lewis continued to make huge strides this week in Eating School, and he has continued to progress in the right direction.

I officially survived my first week of my 8 weeks as a single mommy. It was tough! Every night I was completely wiped out from chasing him around all day long. Caffeine has become my friend this week!

Lewis had a few speed bumps in the road, but we have climbed over them successful and by Friday things were looking bright again. The first obstacle was that his tummy hasn't been feeling so great since we introduced the pears and thickened milk, and so we were unsure if it was the food or a GI Bug. I don't think we fully figured it all out, but the good news is that he didn't lose a ton of weight and he is doing better now. We waited to start introducing a 2nd food in, till the yucky diapers went away. I think by the beginning of next week, he will be tasting a new food! The second obstacle we faced this week, was that Lewis was missing home and Daddy very much! I spent a few nights holding a hysterical little boy who kept asking me to go home and to go find Daddy for hours at end. It took just about every single thing in me to not just pack up and go, but I know that God has us here for a reason and he will take care of it all. His missing home and his upset tummy made him not want to go into his sessions with his therapist, and he starting throwing some horrible tantrums when it was his turn to eat. His therapist have started to carry him into his sessions, just giving him that little bit of extra comfort that he needs. I bet it has to be pretty scary to be a 3 year old having to walk into a cold white room with strangers and facing your biggest fear. I would throw a tantrum too! The extra hugs going into the session have helped greatly though! He is doing better with learning how to close his lips around the spoon, and how to swallow his bites. At the end of the week he was completely finishing his bites of pears, and his entire drink! What he is drinking from his bottle we are already subtracting from his gtube feeds. It already feels so nice to not have to hook him up to the pump!

I am SO incredibly proud of him, and the progress that he is making. He is jumping leaps and bounds, and over all he had a pretty amazing 2nd week in eating school.

Daddy did come to visit this weekend, and on Sunday we took him to the Children's museum. The bee exhibit, the bubbles, and the fireman station were big hits with the Lewie man. The Ronald McDonald house has free passes for us to use, so we definitely will be going back. The Ronald McDonald house was been so amazing to us so far, and we couldn't be more grateful for this home away from home. I am being spoiled to death, by the warm chocolate chip cookies almost every night. I am going to miss the counter full of baked goods every morning, afternoon, and night when we go home.

Driving the car. This picture sort of scares me for when he is 16, looking at his face and his devilish little smile!

The weather was gorgeous, so we spent some time at the park!

He LOVES to play the piano. Santa will you bring me a baby grand?

The bubbles were a huge hit!

Feeding Journey-First Bite

2011-11-01T20:38:00.000-04:00

Things are progressing faster than we thought they would!!

Lewis took his first taste of food today! They started him out with some very tiny bites of Beef Stew, then moved on to pears, and he is also trying a pediasure thickened with honey from a squeeze bottle!

He is still having some difficulty with spitting the food back out and closing his lips to keep the food in. He needs to work on keeping his lips tight together, chew down with his teeth, and making the muscles in his cheeks to move. He at this point has no movement in his cheeks, and has not had one successful bite down with his teeth. He is still having some behavioral issues, and some oral sensory issues.

BUT HE TOOK HIS FIRST TASTE OF FOOD!!!

I am one PROUD mama! Things are looking good!!!!

Halloween 2011

2011-10-31T20:56:00.000-04:00

He kept trying to give the monkey his banana, and then would say its stuck!

He was nose to nose with a Cow!

He loved the train!

On October 16th we met up with Becky, Mike, Sophie, Kaden and Lewies Grandma and Grandpa for the Saginaw Zoo Boo. It was beautiful weather, and the set up was just perfect for the kids. Lewis loved the animals and the train, and he really caught on to the 'Trick or Treat!'

This past weekend, Jeremy and I took him to the Zoo Boo at the zoo in Grand Rapids. Can you tell we love our zoos? :0) Once again Lewis had a blast, and LOVES his animals!

This was so neat, to be so close to a lion!

He loves his chickens! LOL

Today on actual Halloween, they did a fun little costume parade with the kids, they got to paint pumpkins, and got a little loot bag of treasures. Lewis was way too exhausted from Eating School to go out tonight to any houses, so we got dressed up for some pictures and a treat bag from Ronald Mcdonald himself. Hopefully he won't hate me when he is 16 for not taking him out! Then hopefully next year he will actually be eating the candy. Makes me smile thinking about how awesome our future is going to be!

Too tired to even sit up for a picture

Our best attempt at a family photo this year..don't we both look exhausted!!

Feeding Journey-1st week

2011-10-27T18:35:00.003-04:00

I can't even believe we have finished our first week of "Eating School!" We have waited and dreamed of this happening for so long, that it feels so strange to be typing out our first week.
What a week it has been though!

The week before I think I had about every single emotion running through my body. I think I can sum it all up in a quote, "If you build it, it will come." It is sort of a quote I like to live my life by, as cheesy as it may be. In other words if you think and believe positive, then positive things will happen. We went into this journey with the attitude that this is it, we are putting everything we have in to it. It has to work, we have no other option. Nothing like some pressure on mamas shoulders! :0)

Our first few days of school have been good. He did really well with not showing any behavioral issues at first, but the 'honeymoon' stage is over with his therapists and they are emerging. The first few days his sessions consist of chin touching and learning to open his mouth big. Once he did that with only 20% of behavioral errors with each touch, he got to move on to a dry spoon. Introducing the spoon in is where we are getting some resistance with him..but its to be expected. They are very big on positive reinforcement, praise, and if he does good with his bites he gets to play with a toy for 10 seconds. All of this is happening with him in a room by himself with his therapists, while me and Jeremy watch through an observation room.

I am already seeing improvements with this eating, and I am looking forward to maybe seeing him take his first bite of food next week.

It is amazing to watch these kids taking on their biggest fears without their mama holding their hand next to them.

All of the kids are so precious, and we are some brave mamas!

We are staying at the Ronald Mcdonald house, which has been really great. We have had dinner prepared for us almost every night so far..such a blessing! It's not home, but its the best closest thing to it.

We don't have school tomorrow, because of a feeding conference in the area. It was a nice surprise for us to get one more free day with Jeremy. We think we are going to check out the zoo boo at the John Ball zoo in the area.

Settling into the Mcdonald house on our first night

Were here!

He had a great session on our 2nd day, so he got to ride the trike

Superman! How cute is he in that helmet!!

So far so good! Our future is looking VERY bright!!

1st Field Trip

2011-10-12T21:28:00.000-04:00

Last Friday, Lewie had his first field trip as a school kid. He went to the Apple Orchard with his school! The weather was gorgeous, the apples were sweet, and the doughnuts were hot and fresh. Couldn't of asked for a more perfect afternoon!

I know, stop the cuteness! He is a ladies man for sure! So sweet!

Moms Birthday

2011-10-12T21:21:00.001-04:00

It was my Birthday this past weekend! It was so fun to spend the day with my boys, eating yummy food and of course the cake. We spent the afternoon at our Friends daughters 1st Birthday Party, and then had some yummy Mac and Cheese from Noodles and finished off the night with some ice cream cake. I love me some ice cream cake! The next day we took advantage of the amazing Michigan weather, and heading to the Detroit Zoo. Lewis had a blast! I definitely made some pretty special Birthday wishes, one of them I am hoping comes true and we will have some exciting news to share in the next year! :0)

Jeremy said to Lewis, "Look do you see the Camels?' Lewis said back in a very matter of fact way, "No Dad that's not a Camel that's a Dromedary!" We had no idea he even knew the difference! We had to go home, and google it..he was right! We later figured out he learned it from one of his Ipad games. Love that Ipad!

He was the most excited to see the Giraffes!

He also fell in love with the polar bears. He wanted to take him home, and have him live with Diesel. He still thinks Diesel is sleeping in the cave of his fish bowl. He isn't getting the idea.

It was a great Birthday! Another year older! *Sigh*

Weekend at Grandmas House

2011-10-06T20:23:00.003-04:00

A few weekends ago we spent a weekend at my parents house, and had some great adventures!
First we met up with about a quarter of the Morgan side of the family, at Yates Cider Mill. It was so great to see everyone, and all of the new babies in the family. I have such a large family on my Dads side, and I know I can always go to them for some laugher! We have such a good time together!

When we got back to my parents house from the Cider Mill, we found three baby squirrels on their back patio. The dogs were going CRAZY trying to chase them, so we tried to save them and put them back in the woods down the street. It was such an adventure! I think my husband can now add, Squirrel catcher, to his resume. They were the most adorable little babies though, and they had this little peek squeak..to die for cuteness! I felt so horrible that they got lost from their mama though.

Please Please tell me my child isn't the only one that is OBSESSED with sweeping and cleaning. The first thing he asks to do when we get to Grandmas house is sweep the patio. He has a Lighting McQueen car, a sand box, tractor toys, three dogs, a gazillion outdoor toys, and he asks for the broom. LOL We call him our little Danny Tanner, because he really is in love with cleaning. At least at home I don't ever have to beg him to clean up his toys, the clean up song is his favorite one. Oh boy! Pretty sure he is whistling "Hi Ho Hi Ho off to work I go" in this picture!

Of course after a long night of sweeping the leaves away, a bath in Grandmas sink is always in order!

The next day we ventured over to the Farmers and Flea market they have on Sundays. Always a good time with the redneck folks! :0) Lewis picked out a pumpkin..well a few..Grandma couldn't say no to him.

He has pretty much became in love with pumpkins. We can't take him to the store without walking past a pumpkin anything, and Lewis saying "Please Please Please Pumpkin Please.." until we get him the pumpkin. We have just about every pumpkin type of thing in our house! He's 3..gotta love him!

Updates

2011-10-06T12:49:00.000-04:00

I try so hard to keep up with this, but life just always seems to get chaotic the moment I think things have slowed down!
At the end of August, we took a mini family vaca to Frankenmuth for a weekend of fun and the Day out with Thomas event. Lewis was practically beaming with excitement the entire time we were at the Thomas event. I have never seen him more happier, and it made me weepy to know he was just so over filled with joy. His favorite part was probably meeting Sir Topham Hat, he was in complete awe and was star struck! It was sooooo cute! He thought he was such a big boy that he got to sleep in a double bed all by himself! He also loved swimming, we visited a petting farm where he was in love with the chickens, and the cheese mouse is always a big hit!

On Labor Day weekend Lewis went to his first carnival. He won a fish all on his own, and was SO PROUD of himself! He named the fish Diesel. Sadly Diesel only made it a few weeks, and actually got flushed a few days ago. He went on his first ride, and his smile couldn't of been bigger!

On September 6th, Lewis had his first day of preschool! He has only cried once at drop off, and well lets not talk about how many times I had to wipe away a few tears. He loves his teachers, and he is doing fantastic! His favorite friend is a little boy named Dominick, I think they both have a love for cars! The honeymoon stage is definitely over, and some of his behavior issues are starting to emerge. However, everyone is on board with guiding him to the best he possibly can be. Lunch has been a bit challenging, mostly on my part. I had a hard time getting with the groove of having to pack a lunch, figuring out how to transfer the milk to school, and finding a lunch box. He is doing great though, and today even took a few licks of the bananas in his lunch. We already see an improvement in his communication skills, and it is so fun to listen to him talk about his class. His teacher says his favorite thing to do every morning is run up to his family pictures on the wall, and says good morning to everyone in the pictures. LOL Adorable! Tomorrow is his first field trip to the Apple Orchard, and it should be a blast.

I always like to save the best news for last! :0) We got the much anticipated letter in the mail from the Feeding Clinic in Grand Rapids, and we are starting the program on October 25th. We couldn't be more thrilled! It has been a bit of a rush to fit in appointments and to get everything through to the insurance companies, but we are all beyond excited. I have about every emotion running through my body, but we having amazing support from our friends and family. Let the food party begin!

Kids say the Darnest Things

2011-08-17T20:36:00.000-04:00

The little mans speech has gone out the roof the last few weeks! He has been saying the cutest one liners! I love it! He just cracks me up so much!
Today at snack I asked him what he wanted, and up until today I could of told you right away he would say peanut butter and jelly. We have been on a PB&J kick for almost 6 months! Also he only likes the red kind of jelly not the purple kind! Mind you he doesn't even actually eat the jelly..he just likes to lick the bread! :0) Today I asked him the usual question, and he replied back with "I want some steak!" OMG I about peed my pants in laughter! I have no idea where he got it from, we rarely ever eat steak and havent in over a year! I went with the change up though and convinced him that my vegtable soup was just as tasty, and he took about two small licks of the broth and loved it.

Then later on before dinner, he went into a time out for throwing his books on the ground. When I went to get him out 3 mins later, he looked at me and said "I DON'T believe it!" with a mad grin on his face and his hands in the I don't know position. It was adorable, he got away with it this time!

Tonight at bed time he kept playing in his bed saying "No way Dude! No way Dude! No way!" while he was supposed to be sleeping.

Someone got a back to school haircut yesterday! During the wait in the lobby, he stoped playing looked up and his face turned about 10 shades red and was grunting so loud. He proceeded to tell the entire lobby full of people that, "It's pooping." I asked him in a whisper if he needed to go potty, and he said "No! Pooping hurts!" Every single person in that lobby was laughing hysterically. I rushed him to the bathroom as he clearly was going potty! We walked out of the bathroom, and he looked at the lobby and said "SUPRISE!" LOL Seriously where does he get this stuff from!

I am so happy his speech is finally starting to progress. We still have alot of work to do on conversation skills, the difference between yes/no, expressing his wants/needs, and understanding concepts. He is improving, and I have seen a huge jump in the last few weeks! He tends to say alot of "one liners" and usually they don't pertain to what we are doing at the moment or have any meaning. When he trys to say more than two or three words at a time it usually just sounds like a mumbled mess, and it is really hard to interpret what he said. He gets really out of breath when he has to say sentences.

I can only imagen what is going to come out of his mouth next!

Birthday Celebrations

2011-08-16T21:43:00.000-04:00

Lewis had such a GREAT 3rd Birthday! Definitely one spoiled little boy..in a good way! :0) On Saturday, his actual birthday, we just played in the morning and he got to pick out what we did. Of course he picked out to watch the Cars movie while playing with his new Mater and Lighting car..big surprise! That afternoon we met up with my BIL and SIL and Lewies cousins Caleb and Vivian at the Chelsea Tree House for an afternoon of fun! Unfortunately I didn't get to go, because I will still sick and didn't want to give anything to the other kids. Jeremy took him and they had a blast, and went to dinner after at a Mexican restaurant next door. I was sad to miss his little party with his cousins, but on the other hand I was glad to get some rest and to start feeling better. They came home, and we then went out for some birthday ice cream. Then we came home and Lewis got to open his gifts from his Grandma and Grandpa in St. Louis!

On Monday, my parents came over for a little surprise party complete with Sesame Street decorations. Lewis was totally shocked when he woke up from his nap to see the house decorated, and to see Grandma and Papa jumping out to say SURPRISE! He was so giggly and so happy! It filled my heart with joy to see him just so happy. Lewis showed Grandma all of his race cars, read some books, and we danced to some Sesame Street music. Jeremy got home from work and we had Chinese for dinner, and then some cake and ice cream. Of course there was some more Birthday gifts to open also!

He was being so kind at his party trying to feed his cookie monster the popcorn and cookies!

I can't believe he is already 3...where has the time gone? Let the fun begin!

Happy Birthday!!

2011-08-13T14:02:00.013-04:00

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Happy 3rd Birthday to my little miracle! Its hard to imagine that you were ever that tiny! I am so proud of the strength and determination you have as yourturn into such a little man. I love your dimples, your giggles, your love for cookie monster, your love to help cook, your fearfulness, your bear hugs and slobbery kisses, your love for race cars and speed, your kindness, how you call Frosty your best friend, how you always try to wear dads hats and shoes, your love for animals, how you to try to whistle like Thomas all day long, your zest for life, your baby blue eyes, how you make us kiss every little boo boo, how you always say "I'm alright!", your love for books, your love for swimming, your zaniness, your energy, the little birthmark on your left knee, and the way even at 3 you love with your whole heart. Most importantly I love you for you, and I am couldn't be more proud of you!

I am so grateful for every single day I have with you.

I love you to the moon and back!

Week in Life-Thursday and Friday

2011-08-12T22:00:00.000-04:00

To be honest these two days are sort of a blur, a nyquil induced blur. I caught the cold that Lewis had, but I seemed to of gotten it ten times worse. My throat is so swelled up and sore, I can hardly breathe, eat, or drink. My body aches, and feels like I am being hammered on my joints. My ear drums are ringing and clogged, and it feels like my head is a 100 pound canon ball. My nose..oh lord my nose! I am most likely in sickness hell!
I did manage to capture a few photos of Lewis, who is feeling a whole lot better!
He was so good for me, letting me rest on the couch, bringing me Kleenex, and bottles of water. Such a little helper!

He asked for pudding one afternoon. He did really good with putting it on his hands!

We colored for like two hours on Thursday!

And he wore his backpack with out screaming for once!

I feel like I need to redo this week in the life thing. I swear my life is usually drama free! This week has been jammed packed with drama! We haven't been sick in over 9 months, and really who gets their car stolen?!

Is it fall yet?

Week in the Life-Wednesday

2011-08-10T21:42:00.001-04:00

Oh boy what a day! Actually its been a really crappy day!
Lewis woke up sick as a dog still this morning, I think we went through 3 boxes of kleenex just wiping his nose. He just sat around all morning moppy and sick, which was pretty ok with me because I was still so exhausted. We got going around 10:30, because he had a 6 month GI follow up appointment at the Uof M at 12:30. Left the house around 11:30 to go get into our car and to our suprise our car was gone..vanished..disappeared..it was stolen. Our car was stolen.

Man does this suck!

I could bore you with all the details of how I have been on the phone with our auto insurance company all day trying to figure this crap out. The worst part of everything is that the formula we picked up from the pharmacy the other day was still in our trunk. Yep 500 dollars worth of formula gone! My sons only form of nutrion! I could bore you with the details on how I have been on the phone all day long with our health insurance company to try and get him some formula for his feeds. However, the short answer is that they told us "Oh well we don't know what to tell you!" Oh well are you freaking kidding me!!! Oh well to the fact that I don't have 500 dollars to replace my sons formula supply, and oh well to the fact that he doesn't have any food to eat and could basically starve to death. Oh well!? I could also bore you with all the reasons why I am so angry! However the short answer is that I am really angry that we are being penalized for some idiot stealing our car! We have to pay the deductible, we have to buy the new car seat, we have to pay for the rental car, we have to wait 30 days for the car to be missing to file the claim, we have to replace his formula on our own, we have to purchase the new wagon and stroller, we are the ones that are going to have our rates increase, and we still have to make a car payment that is due for some idiot to drive my car! I am a little furious..can you tell?

I have no idea what we are going to do. This couldn't of happened at a worse financial time for us! We just found out we are loosing our SSI for Lewis, because he no longer medically qualifies. Which is a "What?" all in its own.

I just don't understand why bad things happen to good people. For the last 3 years it feels like it has been one obstacle course after another. I am trying to have faith in God that he knows what he is doing, and that he has a plan for everything he is putting us through. I am trying to see the good in all of this..but it's getting to be really hard.

I am exhausted.

I just want to bury myself into a hole and cry my eyes out!

Is that ok with everyone?

I had to run out to Target to get a new car seat for Lewis, I couldn't be without one in case I needed to rush him to the hospital for any reason. Especially with this nasty cold he has right now. As you can tell he hates the new car seat!

Week in the Life-Tuesday

2011-08-09T20:10:00.000-04:00

Well today didn't turn out at all how I hoped it would. I planned last week a play date with some of our fabulous NICU friends at the Splash Park. Needless to say we didn't make it. I was seriously bummed out! I was really looking forward to hanging with some friends, and letting the kids have a good time together. I was really upset I had to miss it! :0(

Lewis was up all night..sick sick sick sick sick. Finally got him out of his bed at 6 am, came into my room and we snuggled while we watched a cartoon for a half hour so I could get some sleep. He was up all night with a nasty cough, runny nose, and a fever. I know immediately when something is wrong when he snuggles with me, he hasn't been big on snuggling in the last year except when he really doesn't feel well. We eventually moved out to the couch, and we just snuggled..he didn't even want to watch tv for most of the morning. I tried to get him to at least drink some water, knowing it would help his throat but he wouldn't have any of it. The rest of the morning was doing his feeds, wiping his nose, and cleaning up yucky diapers and puke piles. Poor baby! The highest his temp ever got was 100.9...and thankfully it has gone down a bit this afternoon.
I gave him some Tylenol around 11, and he was out in about 5 mins. I tried moving him to his bed around 11:30, because some idiot kept driving down our street in a really loud motorcycle. It is a bit quieter in his room, and he woke up for a few mins when I was moving him but was back out. Then about 45 mins later the garbage truck came down the street making all kinds of ruckus, and he was up and wouldn't go back down. He is a really light sleeper! The rest of the afternoon he just laid on the couch watching Thomas on the Ipad. He didn't even ask or want to move to play with his race cars or toys today. He did ask for some goldfish, and sucked on them for a bit. I had some blueberries in the fridge I needed to use up, so I threw together a blueberry coffee cake for breakfast for the rest of the week. I watched a few shows on the DVR while he watched Thomas and snuggled with me. Jeremy got home around 5, and we had Cheeseburger Mac, garlic bread and Cesare salad for dinner. I then had to vent Lewis for about a half hour, he tends to get really gassy when he is sick and can't pass it himself. We gave him a bath, then his last feed, and got him into bed.

I have to say I feel so bad for the little man being so sick, but boy came I tried of wiping snot all day! Yuck!

This morning around 7..yes he slept with is new Lighting McQueen car all night! :0)

Watching some TV this afternoon...looks such like a man here!

Had to do an outfit change!

Goldfish and the Ipad

My blueberry coffee cake.

My head hurts and I am just exhausted! Planning on finally taking my shower for the day, and getting to bed myself. Correction he just started screaming and crying, I went in to his room and he is crying because snot is all over his pillows. Dear Lord Help me!

Week in the Life-Monday

2011-08-09T01:00:00.000-04:00

Today started at exactly 7:30 am when Lewis woke up for the day! I might not be a morning person, but Lewis sure is an early riser. I helped Jeremy gets his lunch and work things together, and got him out the door. Lewis needed his first round of meds and his first feed at 8, so I got him hooked up and he watched Mickey Mouse Clubhouse while he ate.

I had my morning jolt of caffeine, and I am so in love with these new Iced Coffees. Gives me the perfect wake me up! I am not a big cereal fan in the morning, so I just had a Special K Fruit Crisp bar and my Ice Coffee.

Lewis was done eating at 8:30, and I hopped in the shower while he watched the last half of Sesame Street. I am getting pretty good at the wet right out of the shower hair look these days...just takes too long to do my hair. Desperate need of a hair cut! Got Lewis cleaned up and dressed, and we were out the door by 9:30! We went to the Library first thing, not realizing they didn't open till 10 and we only live 5 mins away. So we went down the street to get gas in the car. I HATE filling the car up with gas, I just think its so gross...makes me want to puke just thinking of what has touched that gas pump handle! I usually make Jeremy do this job :0), but we had time to waste and we needed gas. We went back to the parking lot, and just hung out singing songs on his kids cd. He is currently in love with the "Where going on a Bear Hunt" song. Finally the library opened, we returned our old books, got new ones, and Lewis played for a bit with another little girl who was also there. It was so cute, she kept calling him Honey Bunches. :0) hahah

After the library we headed across the street to the Cobblestone Farm to check out the Farm animals. I love this place! A little piece of the country in the middle of the city! The white horse is usually never out of the barn, so it was a real treat to see him! The goose was also giving us a show, when he was giving himself a bath in the water tub.

It started sprinkling after being at the farm for 15 mins, so I grabbed Lewis and said we had to go...the sky turned really dark quickly and it looked like it was going to start pouring cats and dogs! He wasn't really into my hurry and run plan, and decided to throw a full blown tantrum. So the reality of being a mom of a 3 year old is that we had to do a time out..at the farm..in the rain. Fun!

We got home around noon, and I hooked Lewis up for his lunch and he played some games on the Ipad while he ate. I got dinner in the slow cooker just in time. I put him down for a nap around 12:30, and he said goodnight to the chickens, books, his tube, and to Frosty today. I got some lunch myself, and put the laundry away. I caught up on some emails, picked up some stuff around the house, and even got in a little 15 min nap myself. Lewis got up around 2, and he played in his room with his toys. I changed the sheets on the beds, and played then read our library books together. He needed another feed at 3 with meds, and watched Thomas on the Ipad while he ate. I got caught up on some General Hospital. :0) My guilty pleasure..and I am so not afraid to admit it! We had dinner at 5, and we had a roast with mashed potatoes and gravy, roasted carrots, and corn muffins. It was SOOOO GOOOD! I cleaned up the dishes, while Jeremy played with Lewis for a bit. We then needed to run up to CVS to get his formula for the month. He gets fed Pediatric Compleat, and it costs about 500 dollars for the months supply. Thank goodness for the State of Michigan for footing that bill! Lewis needed to eat again, so he had to wear his backpack while we were at the store.

Lewis has been fighting us allot to wear his backpack, and screams and throws a tantrum every time we feed him. So we've been letting him play a game or watch a little cartoon on the Ipad while he eats. He was just loosing too many calories running around screaming then he was gaining from the feed. We just needed to do what we needed to do to get calories in him and for him to gain weight.

After the store, we came home to a huge box waiting for us! Lewis was SO EXCITED, and kept saying presents for me? I have no idea how he knows the box might of been for him for his Birthday coming up. He was just so excited and jumping around, that we let him start the Birthday celebration early and he opened up two of the gifts inside. He was just tickled to death! We couldn't resist, we are kids at heart who love surprises too!

thats perfect!" He was running around excited with his new Lighting McQueen race car, and slipped on his bottom on the kitchen floor. He came up to me, and said Owie! I said what hurts, and he said "My butt kiss it!" HAHAHA
He needed to get his final feed and meds for the night, and watched Cars in our bed while he ate playing with his new Lighting McQueen race car.
He went down for bed at 8, and man was I ready for bed time!
I am exhausted today! My plan is to watch some tv and veg out with another Strawberry Shortcake. :0)

Week in the Life-Sunday

2011-08-07T20:21:00.000-04:00

I saw on another blog a mom who wrote down everything they did for the entire week. I really wanted to try this on Lewies last week of being two!
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I am so grateful that we go to a church that has services on Saturday nights. I LOVE LOVE LOVE LOVE this! Jeremy and I are not very good morning people, I always feel like it takes us f o r e v e r to get out of the house in the morning..were big butt draggers! So we did church last night, and met some friends after at a hotel pool for our friends 30th birthday. It was nice to see friends, and Lewis had a ball playing with the other kids. Mom forgot the swim suit, so no swimming for us..we just hung out in a grassy area outside.

Today we wanted to go out and check another thing off of our 'summer before preschool' bucket list. Me and the husband had very similar childhoods growing up with camping and going to beaches pretty much every week out of the summer. I literally can not remember a summer of my childhood that did not include weeks spent at the campground. One part of camping that I love is being able to go to the beach. I love the beach, its just so relaxing and peaceful to me. Stepping into the sand and the smell of sunscreen immediately takes me back to so many great memories of my childhood. I definitely wanted to share my love of the beach with Lewis, however the last two summers have just not felt like the 'right' time for him to go and enjoy it. We had heard about Independence Lake in Whitemore Lake, and knew we immediately wanted to try it out and have Lewis take in his first beach experience.

He LOVED it! This lake was perfect, so clean and not too crowded. They had a splash pad right next to the swimming and sand area..it was really perfect. Lewis loved the 'sandbox' as he called it, and scoped sand into his bucket for about an hour straight. I asked him if he was trying to dig a hole to China, and he told me "Going to China." I was a bit worried how he would react, because he has had issues with walking on grass and different pavements before. It took him a few to get used to the sand between his toes, but he sure did love it once he did. I didn't think he would of wanted to venture out into the lake area, and mostly just use the splash pad..but he surprised us all when he just ran out into the water..Jeremy had to go running in after him! He kept saying "Oh boy!" "So much fun!" and "Best Sand Ever!" One of his new phrases is saying Best of...then adding on whatever he is playing with currently at the moment. Last night when we picked him up from Discovery Island, he said "Best Cherrioes Ever..and Best Jesus Ever!" He is just too funny! On a side note, as much as I love the beach..I hate swimming at the actual beach. I am scared to death of fish and water snakes..and I am so afraid they are going to bite me. My husband loves to tease me about this..allot.

I actually caught myself getting a little teary eyed while just sitting in the sand, with Lewis scoping by my feet, and the breeze in my hair. I was just so happy. I will be completely honest that these moments of pure happiness have been far and few between lately. We have been under allot of stress at home financially, trying to dig ourselves out of the debt hole, the preparation of having our family split apart for 2 months at the end of this year, and trying to have another addition to our family. Its hard when you are just so stressed out to just be happy. I am so grateful for this day of happiness, and for just a few hours when we literally had no worries in the world. Thank you God! I needed this day so badly!

We got home around 1:30, gave Lewis a quick shower and put him down for a nap. I myself even took a little nap, while Jeremy ran up to the store for some things.
We had grilled cheese, chips, and apples for dinner. Then my favorite, Strawberry Shortcake for dessert. The new addition of Strawberry Shortcake the cartoon, has had me craving it badly! I got caught up on some laundry and chores around the house. Lewis and Jeremy read some books together, Lewis played with his race cars, and played some games on the Ipad. I clipped the coupons out of the paper..which wow was this a good coupon week! I am excited at the idea of how much I am going to save at the grocery store from the coupons! When putting Lewis to bed tonight, his favorite thing to say goodnight too is pretty much everything in the world that exists. Tonight he said goodnight to the air, the moon, the bears, the fire engine, George, the sandbox, Thomas, and to the beach. Made me smile! My plans for tonight are to watch some more episodes of Friday Night Lights with Jeremy. We just started watching it from our Netflix que, and we are addicted..such a great show!

Shortcake

2011-08-06T21:06:00.000-04:00

I love that in the last few weeks his personality has just been shining through like crazy. Every day he has new likes, discovers new things around him, and just says the funnest things. I just love it!

One of his new likes..Strawberry Shortcake! I find it HILARIOUS! I mean look at that smirk! LOL This is one of those photos we save and pull out when he brings his first girl home. He seriously cried his eyes out the other night, because he didn't want to go to bed and wanted to watch "Shortcake!" I couldn't stop laughing it was so funny!
I love this little man and the fun little boy he is turning into!

Arts n Crafts

2011-08-04T14:40:00.001-04:00

One of the areas that Lewis has some troubles with is having anything dirty or messy on his hands. His OT in Early On worked so hard with him the entire year to get him to an ok place with his hands just being dirty or messy. We decided to tackle one texture at a time...painting..mostly with fingers. By the end of the school year he was very willing to slap some paint on his hands and go at it on a piece of paper. This was not the case at the start of the school year when he would literally try to bury himself into the floor screaming to try and hide from the paint coming near him. So I really wanted to keep up with what we had accomplished during the summer, before preschool starts in the Fall.
So enter in Arts n Crafts Mondays!
I have had this paint a train kit since Christmas for Lewis, and decided that this past Monday would be the perfect day to try it out. He did really good, he loved having the brush to use and didn't really use too much of his hands. This is my fault, I should of hide the brush before he saw it.
He really did have a ball though! Plus he loves trains..what could go wrong? :0)

On a side note, Lewis has always loved Cookie Monster on Sesame Street. We've always thought this was hilarious, because the non cookie eating kid loves the monster who loves cookies. Lewis has been really into watching Sesame Street the last few days, and has developed a cookie monster voice. He will walk around with his Cookie Monster doll trying to feed it cookies while saying, "Feed me Cookies..Me Love Cookies..Cookie Monster." In a deep cookie monster voice, and it is HILARIOUS! I have been trying to get it on video, but he stops doing it the min I push the record button. I am trying though!

Parenting Advice

2011-07-31T20:22:00.000-04:00

So I wanted to link up and join in on the discussion on, Kellys Korner, about some of our best parenting advice.
Now in no way do I even feel for a second that I have this parenting thing figured out. To be honest I always feel like I am just not doing enough..ever. I have definitely had my, I failed as a parent, days and go to bed feeling way too guilty about them.

However, one of the things I have figured out is that positive reinforcement goes along way! I am always telling him how proud of him I am..even for the smallest things. Even if he makes me madder than a hornet, and I am just done with picking up his race cars for the 10th time that day..I ALWAYS find a way to make it positive and to tell him how proud of him I am. Maybe he made the mess of the race cars, because he was sorting them into colors. Sorting colors..wow I am so proud of you Lewis! Great Job! Always tell them how proud of you are of them..no matter what!

That doesn't mean you need to go out and buy the entire aisle ten in the toy store for him when he has a great day, or when you are just so proud you could burst. Be proud and give back with love. A handful of love and kisses goes way more far than a new race car or stuffed animal.

I can not expect Lewis to turn into the person I wish him to be if I don't show him through my own behaviour. If I am positive and loving towards him, then he will be positive and loving towards others around him. Kids love to follow what their parents are doing! Follow by example! It's a do as I do and a do as I say kind of world around here.

In all truth I am SO PROUD of him! He has absolutely defined the odds in his little life so far, and every day I have with him is a gift. I need to take that gift and make the best out of it every single second of the day. He deserves my love, he needs my love, and he needs quality time with us. If I spend my time with him being mad that he yet again threw his milk all over the floor, then what good does that do for anyone? Having him help me then clean up the mess on the floor, and then telling him how proud of him I am for helping..well that goes way further than angry words!

It's Hot!

2011-07-31T20:05:00.001-04:00

It has been so hot in Ann Arbor! We are definitely ready for some cooler weather!
Today we went to campus downtown, hung out at the diag letting Lewis run off some energy. We also got my favorite, some Ben and Jerrys Ice Cream! Yummo! He kept picking up sticks, and waving them around saying "Hocus Pocus!" No idea where he got that one! LOL It was really cute!
Lewis picked out this school bus at the store..he has really been into them lately.

We do church on Saturday nights here, and Lewis always goes to his preschool class. He loves it! Never has a meltdown when we leave him, he gladly waves bye and says "later alligators!" This weekend the kids theme was, Jesus is my rock, and they got to pick out a Jesus rock. For the rest of the weekend, all Lewis has been saying is "Jesus is my rock!" "Jesus loves me!" He has carried his rock around with him everywhere he goes, and even had to bring it to bed with him. We definitely have a little Jesus lover on our hands!

P.S. I hope your enjoying all of my recent blog posts! I am really trying to blog more about our little man, because quite simply I don't want to forget anything. I just want to bottle up his innocence and save it forever!

Looking up

2011-07-27T17:27:00.000-04:00

Ever since my last "our horrible summer" post..things have been actually looking up! Lewis has been really good at listening more, having patience, and wanting to try new things. I have a list of about 50 things I wanted to do with him this summer, before he starts preschool in September. Cramming in the quality bonding time! :0)
One of the places I have been dieing to take him to is a splash pad about 20 mins from us. I knew he would love it...and sure enough he had a BLAST! We definitely will be hitting this place up more the rest of the summer!

Also, please meet the future CEO of Apple! This kid is such a whiz and is so addicted to our Ipad. There are so many great free apps for kids! He knows how to turn it on/off, find his apps, play a good majority of all of them all by himself, play music on the ipod, and watch movies. All that and he is only almost 3! We love our Ipad, and would literally probably be lost without it. We take it everywhere with us, because it gives us the perfect distraction for Lewis when he starts to feel overwhelmed. Play an app on the Ipad or have a tantrum? I will gladly chose the first option please!

Also, check out those dimples! The girls are going to be knocking down our door soon! He is just too cute!

Just keep swimming

2011-07-19T20:22:00.001-04:00

We've created a little fish! We can't keep this little goldfish out of the water!

The heat wave of Summer 2011 has officially hit us, and we are so thankful to have a pool within five feet of our place. Has anyone heard of these puddle jumpers? They are amazing! I would definitely recommend them to anyone! We bought Lewis one a few months ago when we did a little family vaca at Frankenmuth for a weekend. On the way up I realized I forgot to pack his baby swim floaty, and so we pulled into the Coleman store in Birch Run. My husband thought I was a little nuts making him wear this floaty in literally two feet of water in Frankenmuth, but it definitely has been worth it back at home. Lewis has learned to basically swim all on his own, because of this amazing little floaty! You can see that he is swimming in 5 ft of water with no help! Which is great, because this little man LOVES the water. He could swim all day be wrinkled up from head to toe and be the happiest kid in the world. I am also happy we finally found something he LOVES besides just his cars and trains.
However...don't even get me started on the monster he turns into when it comes time to take a bath...we just don't get it!
Gotta love him!

December

2011-07-15T12:03:00.001-04:00

It looks as if December will be the month that we take sail on the adventure of the Feeding Clinic in Grand Rapids. We are SOOO excited! More like unbelievably over the top excited! I can finally see an end in sight, I can finally almost feel the million pounds of stress lifting off my shoulders.

Now on to the exciting part of figuring out how to pay for all of this. We found out that all of his care in the hospital will be covered through our insurance, and my lodging at the Ronald McDonald house will be covered. It's just all of the other little stuff to think about..food, transportation, what to do with the dog for 6 weeks, activities for the weekends in Grand Rapids, and probably some more warmer winter type clothes. We thought winter in central Michigan was bad..I can only imagine how much worse it is going to be on the west side. I have heard they get double the amount of snow!

However, God is Good...and I can't stop smiling!

Ice Cream and Tears

2011-07-06T16:03:00.000-04:00

It was so nice that some of my family was able to make the trip to Ann Arbor for the 4th. It was sooooooooooooo nice to not have to be the one doing the 2 hour trip. Hopefully some day we will be able to move closer to our parents! We spent much of the afternoon at Cobblestone farm which is the same place, we had our wedding reception at. I love going back there now as a family and remembering our wedding memories together. It is so special to me.
I love that Lewis has been able to be with his Great Grandma. I have so many awesome memories with my Grandma growing up, and I am so glad that he is able to be close with her.

Lewis hailed down his first Ice Cream truck this past 4th! He was so cute, and so excited once he heard that famous tune coming down the road. We just couldn't resist!

Earlier today I was checking my email, and Lewis climbed into my lab asking for Baby Movies. Which usually means he likes to watch movies of himself when he was a baby! So today I played some of when he was around a year old or so, but I also for the first time let him watch his NICU photo journey video. I have never shown it to him before, and to be honest I was afraid of the day that I would have to explain his early entrance into this world. I mean I can't even look at the videos or photos without crying or feeling sad myself. So he sat cuddled in my lap with his chewy, and decided to just see how it would go. About half way through the video, I looked down at him and he had tears streaming down his face..he was crying. He looked up at me and said "Baby Lewis" and I said "yes"..and then he said "crying." It was so sad, and I tried to explain to him that he was a very sick baby when he was born and that he was in the hospital for a long time. I am not sure how much he understood, but It felt like God had stuck a knife in my heart when I saw him crying from watching a video of his baby pictures. He held on to me for awhile, and we cried together. This was the first time he cried tears from just pure sadness..and not just tears of frustration.

That is why I am so passionate about prematurity now, and why I feel so strong about helping others who are going through the same path we have. I don't want another little toddler crying over seeing their baby photos.

Patience

2011-06-29T20:40:00.000-04:00

Patience is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without acting on annoyance/anger in a negative way; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties. Patience is the level of endurance one's character can take before negativity (Wikipedia).

Right there is the story of my life the last few months.

It has been one big lesson from God on patience.

Things have been have crazy at the Bacons..really did ever stop being crazy from day one? Here is a run down of whats been happening!
1. In May, Lewis was officially diagnosed as Autistic. It came as no big shocker to me or Jeremy, and we were actually excited to have a diagnoses to move forward in the right direction. It felt like we finally had an answer for the first time in 3 years with Lewis! His school jumped right on board, and he has an IEP in place and will be in a ECSE preschool classroom starting in the fall. All of us agreeded on some great goals for him for the school year, and it was relieving to know he was getting what he needed. I am so excited for him, and yes maybe a little excited that I get to buy school supplies. Isn't the smell of new crayons and paper addicting!
:0) So I would love to say that our love story continues, and everything has been roses. However, his Early On Therapy sessions ended about three weeks ago, and well things have gone down hill since. He was doing SO GOOD by the end of the school year with his sensory issues, he was talking, and starting to socialize with other kids in his classroom. However, it took a year for us to get him in a good spot, and it took 3 weeks to take it all back down again. These last few weeks have been one sensory induced meltdown after another. It has gotten to the point where I am afraid to take him anywhere anymore. I am afraid of the judgment from others from his tantrums, and the stares are just cruel. I know he needs to get out and experience life, and I try SO HARD to make his life as normal as any other 3 year old. However, it's hard..really hard. I have two more months before preschool starts, and his needs can start to be met. I pray that I can make it!
2. Eating. Blah! Nuff said! I am exhausted from doing messy play with food three times a day, doing baths three times a day, and dealing with the food and water sensory melt downs in between. He is making small gains, and I am so proud of him for that. He LOVES to ask for peanut butter and jelly sammies, he asks for one in the morning and carries it around all day long. Every once in awhile he will take lick of the bread, but mostly he enjoys lining up the p&j with his trains...another caboose! He has finally learned to drink out of a sippy cup. I think it took us about 50 cups to go through, before he found one he could tilt and suck out of at the same time. It take many months of taking sips, gagging, and learning to swallow the small amounts of liquid he got out of it. Happy to say that he can now drink a few ounces of a liquid a day without gagging! He usually prefers water, and screams anytime we try to trick him with apple juice or milk. He is no fool! We are still patiently waiting for our turn at the Feeding Clinic in Grand Rapids. We go for a follow up on July 8th, and are really hoping we get some good news that are waiting is over. Honestly, I am deflated from all of this eating stuff...I am exhausted.
3. As exhausted as we are as parents, we are patiently waiting for our life to take it's next step. We are patiently waiting for the NICU roller coaster to end, and for our lives to continue forward. We are wanting to add on another addition to our lives, and I am praying (and buying) baby girls clothes in the anticipation that it will be our turn some day soon. We know that we need Lewis to be in a good place with his Autism and eating difficulties before we move on. He deserves our full attention, and we owe that to him.

It is hard to imagine that it has almost been three years that we welcomed little Lewie into our lives, and we had no idea what was in store for us. We did know that God had a plan for us, and that he would show us the way. He had reasons for giving us a special needs child, he has reasons for testing our patience, and he has reasons for making us jump obstacles every single day. It is still hard three years later to not be playing the blame game. I just hope that I am some what living up to
Gods expectations that he has for me, and that I am doing a good enough job. I am trying to be the best parent and advocate for Lewis as I can be..I really am trying. I hope that everyone can see that. Some days I feel just completely deflated, but I know that I need to pick myself up and move forward. I have to..I have no choice.

In the mean time we will still be trying to patiently wait for our future, and for the day that life seems easy.

March for Babies 2011

2011-03-01T14:43:00.000-05:00

The Bacon family will once again be walking on, May 1st, to support the March of Dimes. All donations in any size are welcome! :0) Donations can be made at: www.marchforbabies.org/lewiswilliam! Thank you so much in advance!

In case you need some inspiration, here is our NICU photo journey:

Photo and video editing at www.OneTrueMedia.com

I promise an update on the little man soon!
Thanks!

Sensory Integration Disorder

2011-01-15T21:45:00.000-05:00

We are leaning more and more towards a diagnose of Sensory Integration Disorder for Lewis, and it can be pretty over whelming at times!
I wanted to share a few good articles on what our life is like, and how to explain his little quirks and behaviors.
Like it says in all of these articles, there is no cure, so we are just trying to cope and learn strategies as we go.

http://www.zimbio.com/Sensory+Integration+Dysfunction/articles/9/Sensory+Processing+disorder+sound+like+child

http://www.incrediblehorizons.com/sensory-integration.htm

We are in the process of getting an appt set up with the Behavioral and Developmental clinic at UofM, so that we can get an official diagnosis. Even though it is not recognized by insurane companies as a "real" disorder, so they will not cover any type of therapy. However, with a diagnosis we can get proper therapy at school, and it can be in his IEP for when he starts preschool in August.

Two cute videos

2010-12-30T23:15:00.000-05:00

Make video montages at www.OneTrueMedia.com

Make an on-line slideshow at www.OneTrueMedia.com

Enjoy!!

We're here!

2010-12-30T22:21:00.000-05:00

It's been awhile, but its always true that no news is good news. Things around the Bacon household have been really good, and we couldn't ask for anything better these days. It is usually easier and so much more fun to do bullet points, so here's are update!

1. We have successfully switched Lewis back to bolus feeds! He gets fed at 8 am, 11:30, 3:30, and 6:30, he gets fed 6 oz of Pediatric Compleat formula over a 30 min interval. In between two the feds when I get the time I also give him 6 oz of water. He has been tolerating this wonderfully, and we are so excited that we don't have to drag the backpack around all the time anymore. The new feeding schedule resembles more of a normal persons eating habits, and we are hoping this will help with him eating more foods orally. He is 28 pounds!
2. We are still on the waiting list for the feeding clinic, and we are tentatively scheduled to start the program sometime August-October of 2011. Of course if they have an opening sooner we are jumping all over it! Still not sure how we are going to make this all work, but we are putting it into Gods hands and taking one day at a time. Lewis IS doing better with accepting more foods towards his mouth! He really loves his Cheerios, Mcdonalds french fries, and garlic bread. He of course only takes licks of these foods, and has not actually swallowed any food. He is getting allot better with asking and taking sips of water through out the day, and we are on the slow switch over to milk. Watered down milk is really disgusting in case you were wondering. :0)
3. Lewis is still in therapy/school two days a week for two hours at at time. HE LOVES IT!! Love might be an understatement as well. He is so sweet to all of the other kids in his class, and even has his first little boy crush. (I know I am weeping inside..too young too young!!) He loves singing the songs, and his favorites are "Row Row your Boat" and "The wheels on the bus." Therapy is helping Lewis in so many ways, and he has gained leaps and bounds since September. He is finally coming out of his shell, and interacting more with the other kids and therapists. He has a whole bunch of new words, and is pretty good at the repeat this word or phrase game. Lewis has completely surprised all of us one day when, he recognized and told me all the letters, shapes, and colors. He is a little smart cookie. He loves playing the which letter is this game!
4. Christmas 2010 was amazing. We were completely blessed with so many generous gifts, and we had a blast spending time with our families. Lewis was of course spoiled with tons of Thomas!! Lewis knows every single one of the trains names..take him down the Thomas aisle at the store and he can tell you every single one of them. He's a little obsessed!

However, there always has to be the issues perking around the corner. We have been having some more 'behavioral' issues with him, and its really hard to categorize them. He has developed this very odd head tilt/wiggle..where he is can not stop tilting his head from left to right to back to front. Some times its just a little tilt, but other times he goes in full force moving his entire body all around. He just can not sit still!! We have noticed that it gets worse the more he is in a crowded place, when he doesn't know how to communicate back to us, unfamiliar places or people, or when he is frustrated. It gets pretty exhausting watching him just wiggle all the time. He is also having allot of issues expressing his emotions, and has a very hard time controlling his frustrations. He also looses allot of eye contact with people, if he doesn't know know you then he isn't looking at you (pretty much Mommy and Daddy only :0) ).As I have mentioned he is one smart cookie knowing all of his letters, shapes, and colors..so smart that's a bit worry some. A two year old who can not answer a question or speak in sentences, should not know all of this stuff! We are still at this point unsure whether this is going to be falling into the Autism Spectrum league or in the Sensory Processing Disorder league. Nobody is being too quick to label or diagnose him, which I am grateful for, however, at times it would be nice to just know whats going on with him!

Weighing the good with the bad though, I would say things have been fantastic. I learned a long time ago that baby steps are big steps! I am so proud of Lewis, and of the little man he is becoming. I just can't help but to love him!

Prematurity Awareness

2010-11-09T10:29:00.000-05:00

Please visit the following link, to get a great parents perspective on how much prematurity really just well..sucks!
http://eliza-grace-micro-preemie.blogspot.com/2010/11/public-service-announcement.html

Lewis is 27 months old, and we are still dealing with the after math of his early arrival into this world. It still sucks 27 months later. I still yearn for a normal pregnancy, and I still imagine what a normal life would be like with a toddler not including medical equipment, therapy appointments, and weekly weight checks. I wonder what a world would be like without having to send my two year old off to surgery for the 6th time, or seeing the scars all over his body.

I know he didn't ask for all of this, and we certainly didn't wish for this.

It's now become our life though, and I am still trying to figure my way around the obstacles.

Some days I still wonder when the roller coaster will stop, just for an hour or maybe a day...
Maybe some day..right?

It's been awhile

2010-10-24T16:01:00.000-04:00

A very very long while!
It just seems like the last month and half has just literally flown by like a pile of leaves in a wind storm. So much is going on, so much has happened...and so much is making me smile these days.
I promise to get to typing it all out soon. Very soon. I promise.
Until then a few pictures to tide you over!

Wolverine Fever

2010-09-05T10:00:00.000-04:00

One can not be born and live in Ann Arbor without some wolverine running through your blood! Yesterday was the start of the football season, and just like every other person in Ann Arbor we were celebrating maize and blue!

I mean he was the only baby in the NICU with a UofM blanket on his isolette!

However, because they won we of course believe it was because of Lewis and his hoodie..so now Lewis has to wear his hoodie every game Saturday...we're pretty cool parents..huh!? :0)

Evaluation at the Feeding Clinic

2010-09-03T09:43:00.000-04:00

Yesterday, was the initial evaluation at the Feeding Clinic in Grand Rapids that we have been anticipating ever since May when we first decided to go full force with this amazing program. We were so excited to meet the staff, check out Grand Rapids, and see in action all of the wonderful things they are doing for families and the kids with feeding disabilities. One word can basically sum our first experience with this program..AMAZING!!! We are so over joyed that we got hooked up with them, and are just so over the top excited for this new journey in our lives to begin.

So for starters we have now been officially adopted into the program, however we are now on the year long waiting list for the 8 week long feeding clinic to start. We knew there was some type of waiting list, but were unsure of the exact wait time. We were pretty shocked to hear a year, we were hoping that we could get in right away or sometime around the new year. However, after things were explained to us about how long it is going to take to prep his tummy for the clinic..we understood right away.

So we now have a new plan in action, and we are going full steam ahead with the program. For starters we are starting him on a new medication, Neurontin, this is going to basically stop the pain that his stomach is causing him whenever any type of food or liquid touches the nerve endings in his tummy. In the past we have always and still have the issue with him retching, this medication should hopefully significantly stop this issue or eliminate it all together. It was explained to us that he is retching because the nerve endings in his tummy are signaling pain whenever a food or liquid touches. This new med combined with his already Flovent, and Zegreid should make huge improvments. The next step is going to be a slow process, but it has to be slow for his body to accept the foods, new proteins, and new vitamins. His body has had no real type of food in his system in two years, his body would have no idea what to do once fruits, meat, or vegetables were digested. We have to teach his body to accept real food! So we are switching him to a new formula called Compleat, and it is basically what they call a blenderized diet. It is a combo of milk, chicken stock, peas, carrots, tomatoes, and cranberry juice mixed together to a formula consistency. We are going to introduce this formula into his system slowly, one ounce every week. We are also doing this into his GJ tube, which completely bypasses his stomach..which is a good thing since his stomach needs to get used to the new meds. Once his body accepts the new formula, then we can switch to feeding him through his G tube, and bringing food into his stomach. Confused yet? :0) It's really complicated I know! The last step is for us to do some lower and up GI's to make sure that there are no real concerns with his body functioning. Another step to be done is a gastro mobility test, to make sure that his stomach is emptying foods in a timely manner.

With all of the new changes to take place, we also go back to the clinic every three months for a follow up before we start the actual program. I also call in every week to give an progress report of how things have been going.

Have I mentioned that we are excited about this?! For once we finally felt like we belonged in a setting, Lewis was finally around other kids who understood him, we were finally around other parents that got what we've been going though. All of the doctors knew exactly what to do, and it just felt really comfortable for us.

So it is going to be a really long year ahead of us, but we are looking forward to the end result. I am going to actually be able to sit down, make memories and enjoy a Happy Meal with my son...and that is what is keeping me going!

Birthday and Hiccups

2010-09-01T19:48:00.001-04:00

Whew it has been awhile since my last post! So here is all of the latest happenings with the Bacons!

On August 15th, we celebrated Lewis turning two with about 60 of our friends and family. It was a blast, but really really hot! We rented a mini choo choo train for the kids to ride, and it was pretty hard to keep Lewis off the train..he went for four train rides! He loved all of the balloons, that were just for him. He however cared more about the balloons and water bottles then smashing his cake..oh well..we have the next thirty years for him to smash his cake in his face! Maybe when he turns 21? :0) He was completely spoiled, and received so many cool new toys and outfits. Thank you so much to everyone that celebrated with us, and for enduring the heat! We appreciate all of your love, and prayers, and support that you have given Lewis through the last two years. He would definitely not be where he is today with out all of our love and prayers!

Of course it is not a typical day in our lives, with out a few hiccups along the way. First it started with Lewis pulling his feeding tube out, while he was having one of his many tantrums. He was so mad at me that I put him in his highchair for five mins, while I cleaned up the dinner table..so so so mad..so he pulled his feeding tube out. He is rebellious..isn't he! So that put us in the hospital for two days, and we sent him off for surgery for the 6th time. He was a serious crab apple the entire time, and pretty much screamed for 24 hours straight!

Then of course it never gets any easier for us, and he ended up getting really sick with RSV and C-Diff. Two things I never wish upon any family! So we've been pretty much stuck in the house for two weeks straight, while he recovers. At least it has given him an opportunity to check out all of his new Birthday presents!

Then of course it is never a good time without a cute picture with mom!

Tomorrow is the BIG day in Grand Rapids. I will keep you posted on what happens! We are so excited for Lewis, and for this new journey in our lives.

It's your Birthday!

2010-08-13T15:26:00.001-04:00

Happy Birthday to my
Amazing
Extraordinary
Marvelous
Wonderful
Loveable
Strong
Dedicated
Fascinating
Awe-inspiring
Giggly
Glorious
Special
Little two year old! I can hardly believe that you are growing before my eyes into such an incredible little man! I am so proud of you, and am inspired by your strength and determination every day! You are my miracle!

If I only Knew...

2010-08-06T11:05:00.000-04:00

In one week, our little miracle will be two! How I can hardly believe myself how time has flown by...I have been saying that allot lately..haven't I?!

I thought that I would post the only picture I have of me being pregnant. We took this picture on this day two years ago, one week before I delivered Lewis.

If only I knew that this would of been my last week of carrying my precious little boy inside me. I would of done so many things differently! I miss that belly..I miss being pregnant. Most importantly I miss all of the amazing beautiful things that pregnancy does to our bodies that I did not get to experience.

I wish I would of been able to feel him kick me..at least once...

Beatin the Heat

2010-07-25T20:55:00.001-04:00

It is still so hard for me to imagine, that yes indeed I am the mom of an almost two year old! Time sure did fly! However, Lewis is making it very known that he indeed is a two year old. Tantrums have started in full force, and if I have to hear those shrilling screams because the book will not fit into the DVD player..well let's just say I am already going crazy. This week we are starting operation move nap time around. Up until this last week, we never had to have a single argument about naps or bed time..the boy loved his sleep! Well now he is refusing to take his morning nap which is usually around ten (he would sleep about an hour and half), and then he is too overtired for his afternoon nap around three (again would sleep about an hour and half)....so for the last week he has not been napping AT ALL which might equivalent to the reason of the extra tantrums. He is just not tired enough for his morning nap, but then too overtired for his afternoon nap. So alas we are going to start trying for a noon nap, and I am hoping he sleeps about two and half hours. We shall see what the little booger decides to do!

He is also finally starting to realize that his body poops and pees, and tells us when he is "all done" pooping..I am very thrilled for this because it means one step closer to potty training! His new favorite thing to play with is the rope for the dog, and him and the dog go at it all day long playing tug of war! His speech is doing good, I have noticed a regression since therapy ended for the summer..but we are trying to get him to say his needs and wants more and more. He says a whole slew of things, and is very good at imitating everything we say and do. It is just getting him to actually use those words when he wants or needs something, instead of just screaming at us till we figure it out. He loves his Curious George, and we love dressing him in all of Lew's former preemie clothes. It is a perfect fit! We are working more with him on imaginary play, and trying to get him to use his creative side. We are hoping with him feeding and dressing George, will help with him wanting to be more independent as well with his care. Such as number one wanting to eat (If George eats it then it is ok for me to eat too..kind of theory), then secondly helping with getting dressed and caring for his body.

Unfortunately we have not had a very successful doctor appointment week. His GI doctor is very unhappy with his weight gain, he has gained a single pound in six months. More importantly is head has not grown in that six months either, they are really worried about his brain functions. So we are switching his formula to Peptamen Junior 1.5, in the hopes to get a few extra calories pumped into him. We are also doing bolus feeds of 3 ounces at a time, six times a day of water mixed with Duocal. This also will pump more fat into this tiny little body. However, his tummy is not used to having all of this food..so he has been retching allot more..yuck! We have another appointment in three weeks, and if he has not gained any weight he will be hospitalized to run tests and figure out a new plan for feeding. We are hoping we can avoid a long hospital stay!

It has been so hot here in Michigan, so we have been beating the heat at the pool! Lewis was a bit timid at first to get into the big pool, but once he got used to it...he turned into a little fish! The water is great for his muscles and strengthening his core, and daddy the former swimmer loves that his boy is turning into a fishy fish!

He is pretty stinkin' cute though!

Letting Go

2010-07-21T19:18:00.000-04:00

One of the major lessons that I have learned over the past two years, can basically be summed up as "Sometimes you just HAVE to let go of the spoon!"

Tonight was no exception to that lesson of life. We are still going very strong with messy play, and the good new is that he IS allowing more foods into his mouth. On a few occasions he actually got a few bites of yogurt, a few puffs and a few bites of bananas(he usually spits these back out-as he has no idea how to chew or manipulate the food to the side of his mouth or how to swallow a chunk of food).

Bites are small steps.

However, the most exciting news of all is....

WE FINALLY HAVE AN APPOINTMENT!!! My persistence has truly paid off, and I couldn't be happier right now. Our first appt with the feeding clinic in Grand Rapids is September 2nd, at 3:30 p.m. I am so excited for this next step in our lives! More importantly I am more excited for the day that I WILL get to enjoy a McDonalds Happy Meal with him.

Some times it is the small things in life that matter.

Yippie!

2010-07-17T18:40:00.000-04:00

The feeding clinic called!!! Of course they HAD to call five mins after I turned my phone on vibe, because Lewis was taking a nap..and of course I forgot it was on vibrate. However, the message said that she wants to do a phone interview and set up our first initial evaluation! I am assuming this means that insurance approved it, and WE GOT IN!!! However, by the time that I called her back they were already closed..so I have to wait till Monday to get all of the details.

Excitement is in the air!!

Our hope is that he will come to love food, and not just want to play the drums with the asparagus on the lettuce! :0)

St. Louis

2010-07-12T13:43:00.001-04:00

Make video montages at www.OneTrueMedia.com

We recently just spent a week in St. Louis visiting with Lew's gma and gpa. We had such an amazing time, and really dreaded going home..I felt like I could of just stayed forever..well except for the heat..it was really hot! Thank you once again for being so generous with us, and for giving us such an amazing vacation! It was a complete blast!

Good news with the feeding clinic, the lady should be finishing up our insurance approvals this week, and calling me on Friday to set up an appointment! WooHoo!

We have also been visiting the ER quite frequently lately. Thanks to our very curious little toddler! Have a mentioned how much this child LOVES Curious George?! The one time to hit his head on the end of a coffee table, causing severe bruising of his forehead and the area between his eyes. The bruising is all gone, but he still has a bump right above his nose. The other visit was in St. Louis actually, he fell and cut up his gums, teeth, and lip from falling on an umbrella stand. The bleeding has stop, but it is still very bruised. We have to find a pediatric dentist, so that can make sure he did not do any permanent damage to his two upper teeth! Just another doctor to add to our already long list! I suppose we better get used to it though, he is a boy after all!

Monkey on the loose!

2010-06-23T09:44:00.000-04:00

Last night I sat on the couch ready to embark on a nice snack of a yellow yummy banana, I peeled it open and went to take my first bite..when...

I felt the tap of a red shovel on my knee, and had two big blue begging eyes of wonderment starring up at me.

Folks we officially have a Banana Napper in the house!

Oh my handsome little monkey..what are we going to do with you!?

The sweet sound of Mama

2010-06-17T11:09:00.000-04:00

For the past 22 months, I have been answering to the shrilling screams of my child trying to get my attention. I have answered time and time again to his screams of needs and wants from his Mama. Well yesterday was a great surprise, when he finally called out Mama! It was the best thing ever! I could listen to him say Mama, Mama, Mama...all day long. Isn't he just the cutest?!

Also, Lewis is the new proud owner of a pearly white tooth! He has one of the top middle teeth, and the one to the right of that one. Thankfully getting these teeth in were not as pain staking bad as the bottom ones where. Bring those teeth on!

Eating Beginning to Now

2010-06-12T20:28:00.001-04:00

Since we are in the thick of things with our feeding issues with Lewis, I thought it might be worth while to sit down and back track our whole feeding situation. So here it goes:

Even since birth, Lewis has ALWAYS had eating and stomach issues. First I want to say that against all of my wants and desires, I was unable to breastfeed Lewis. When Lewis was born I pumped every two hours, took herbal remedies, slept with his blanket..did everything the lactation consultant told me to do..but I was unable to produce any breast milk. At each pump I was maybe getting one ounce total from each breast! Definitely not enough to stock pile a supply for the little one. So after a month and half of pumping and getting nothing, we decided to stop stressing over it and start using formula. I can remember time and time again having to start and stop many feeds when he was in the NICU. We would be so happy that he would get up to being able to take 20 or 50 mls through his NG tube, then he would get blood in his poop..we would have to stop wait a few days and start from 1 ml all over again. It became very frustrating! We switch from around about 10 different formulas, until we found one that seemed to of been working. He quickly after started taking a bottle, but never got the hang of the suck, swallow, breath thing. After 96 days in the NICU, Lewis went home on an NG feeding tube and oxygen during feeds.

Soon after we brought him home from the NICU, horrible projectile vomiting became our next biggest challenge to over come. He was diagnosed with severe GERD, and was placed on prevacid. He would only have enough energy to take about 2 oz of the bottle at a time, then would vomit it all back up. He was very under weight! But after a few weeks on the prevacid things seemed to of been improving, he was eating a little more, gaining more weight and energy, and still vomiting but it seemed like allot less was coming up. Eventually in February the NG feeding tube came completely out, and he was no longer on oxygen. Very joyous day for us! This was also around the same time that we started to introduce baby food to his diet. From the very beginning he had a very hard time figuring out how to swallow the purees, and never seemed to of gotten over the newborn thrust. It would take us nearly an hour to feed him four simple ounces of a pured food! He just never caught on to it! In the meantime, what he was taking was still coming back up from the reflex. This would usually lead into huge tear filled fests from Lewis, and he was not very happy from not feeling good time after time. He was tested on several occasions for a milk or food allergy, but never has had one. It then became the idea that he might be lactose intolerant, and his stomach has a hard time digesting any dairy product. However, we stuck with things and just kept on chugging along the best we could. He was also very underweight, and we had many trips to the dietitian's office to get advice on how to up his calorie intake. None of which was successful, because we had a very hard time getting him take anything beyond a first stage pureed food.

Around July of 2009, he was eleven months old and no where near the nutriental needs of where he was supposed to be. Was extremely underweight at 12 pounds, and was no where near eating by mouth what was needed for him to grow. We decided to go ahead with a Nissan wrap, and a g tube in his tummy. This was a very tough decision for us, but we felt like we had no other options ahead of us. Something needed to be done, or Lewis was going to be at a severe risk for many things...we were literally afraid he was going to wilt away to nothing! The Nissan was done to help control his reflux, so that he was no longer able to vomit things back up. We were thrilled actually to hear that we would no longer have to pick up piles of puke ten times a day!! The g tube was originally put in for night time feeds to help him get back on track with weight, and then eating food and drinking a bottle during the day. The surgery and our hospital stay was a success, and after four days we went home excited for our new future. However, Lewis quickly became a fan of no longer eating any food or drinking any of his bottle. He would scream in pain any time he had to digest anything into his tummy, and pretty much this is when he started doing total food refusal. We had though of all of our troubles were supposed to be washed away, but it seemed to of opened a whole new can of worms.

In September of 2009, we were admitted back into the hospital to figure out what was going on with his tummy. He had lost weight since having the Nissan/gtube surgery, and was no longer taking anything by mouth. We learned that Lewis had delayed stomach emptying, which meant that his tummy processed food allot slower than normal. When we were during bolus feeds or any large amount of food in his stomach at once, he would basically still want to vomit the food back up. Because he had the wrap, and was no longer about to vomit..he did wretching. Wretching is the want to throw up, but not being able to. His face turns red, he chokes, and cries! He was officially diagnosed with failure to thrive at this hospital stay. At this time also, it became the idea that the Nissan wrap might be too tight causing the wretching as well, and causing him pain to digest food by mouth. We were giving options at home to help improve this. He at this time was also placed on 24/7 feeds through a continuous drip into his g tube.

In November of 2009, things still had not improved. We were given the option of loosing up the wrap, the idea that things could be too tight for him to digest stuff to his tummy. We were also given the option of getting a GJ Feeding tube, so that things were completely bypassing the stomach...this was to help with the wretching. We decided to go with both options, desperate for any kind of improvement for him. This was going to keep him on a 24/7 hour feed still. Things seemed to of been working great, he was barely wretching at all anymore! However, we still were not having any success with getting him to eat orally again. This is when he was officially diagnosed with an oral aversion, the poor guy just had way too many bad experiences with food associated with pain to want to eat anything. Can you blame him?!

In February we started feeding therapy at the Motts Childrens hospital to help him get over his oral aversion. After a few sessions, things started to improve! He was again taking small bites of stage one pured baby foods! We were thrilled!! However we were only approved for 12 sessions, and each session went by with him still only taking stage one foods. When he is taking these foods, much of it ends up back outside of his mouth. He still has the newborn thrust, and has no idea how to bring food to the back of his mouth or to the sides. He was no idea how to swallow whatsoever! Our 12 therapy sessions ended, and we still had not worked our way up to table foods or drinking. We were disappointed, but understood insurance reasons. Our therapist just was not qualified enough to deal with his type of situation. She was very much into messy play, but had no idea how to teach him to swallow foods. So quickly things went under AGAIN, and he started refusing foods AGAIN. AGAIN with searching for answers on why he refuses to any type of food or drink any type of liquid. When he refuses food, he basically turns in the holly terror of holly hell. Best way to describe it. Hits, screams, locks his mouth shut, shakes his head no, bangs his head on his chair, throws the food on the floor..every single sign telling us no way is that coming near me!

We believe now that the loosing of the wrap in November, has gotten too loose and he now has enough room to be refluxing again! So this time he has been placed on Zantec. He is still wretching even though we switched to the GJ tube, and is able to actually bring up stomach acid and secretions. We have to carry around a roll of paper towel everywhere we go! He is still getting fed through his GJ tube, but we have been able to increase the volume a bit so that he is off of the tube at night. He gets 70 mls for 15 hours a day. We continue with messy play, it is a big deal in our house! However, we are finally also gaining weight!

Through out this journey it always seemed like one step forward, two steps back. It also seemed like one big mess, and as you are reading this I am sure you are confused way over your head. We could never get ahead! We always kept thinking that the options laid out for us, were going to be successful. However, everything always kept turning the corner for us in the opposite direction. We are now waiting for our admission into the Intensive Feeding Clinic at the Helen Devos Childrens Hospital in Grand Rapids. We are excited for this next step, and are finally hoping this is the answer to our dreams.

Lollipop Licker

2010-06-04T20:59:00.000-04:00

So Lewis was such a big boy, and received his fourth hair cut this evening! He sat in the chair all by himself, and kept trying to wink at the lady in the mirror..except he has not figured out how to do it with just one eye so does it with both! So he got to pick out his very own sucker from the bucket, and was given the sugar stick of yummyness at dinner. After about fifteen mins of convincing him that it was really tasty, he took about ten licks! Until it became more fun to try and get mommy and daddy to lick the sucker too. He is a pretty good sharer, always thinking about someone else! It became one germ infested family sucker! Memories like this that will last a life time.

Doesn't he look so handsome with his new haircut? Looks chubby too!

Called the feeding clinic today, they received a ton of referrals in at once, so it will be a few weeks before the phone interview and probably the end of July before our initial evaluation. So excited!!!

Memorial Weekend

2010-06-03T10:00:00.000-04:00

We decided to take a mini little vacation for the Memorial Day weekend, and we drove to my parents house up north. It probably is not "Up North" to a Michiganders definition, but it is an hour and half away from us, a 1960s circa house, and in a very small town. So up north or not, it was definitely a very needed little getaway.

Lewis is finally feeling much better, and back to his troublesome little self. Still have not heard back yet from the Feeding Clinic, but if I have not heard anything yet I was going to call them on Friday.

Showing off his swimsuit, waiting for Daddy to finish filling the pool.

First time in the Taj Mahl of baby swimming pools! The water was well water, so unfortunately it was a bit cold..so he did not love it..but he had fun none the less.

He licked the Popsicle twice!

Figuring out how to ride a tricycle for the first time.

The doors to your future are so wide open my little love!

APPARENTLY we have been going about this whole feeding thing the wrong way! This little stinker ate the dog food! I guess all he needed was a lare spoon, a spatula, and a yummy bowl of tasty dog food. Yumm Yumm. After each bite he kept saying mmmm mmmm mmmm. There has to be some calorie content in dog food..right?!

Wham!

2010-05-27T19:59:00.000-04:00

We have been so extremely lucky to bypass the sick bugs flying around like crazy, but then WHAM without any warning sign we got hit by the little life sucking bugs. Lewis is recovering from a really bad case of Croup, and double ear infections. On top of that he is also breaking in his top teeth. He is one pretty miserable little man. He has stayed at his stationary post on the couch, with all of his blankies, watching cartoon after cartoon. Personally I am really not sure how many more episodes of Curious George or Clifford (two of his favorite shows) I can take. However, now when we ask him what his name is he says George...cute!! After four days on steroids, breathing treatments, and Amoxicillan he is finally sleeping through the night and getting his spunk back. I have a feeling though it is going to take us awhile to get back to normal after this.

In other WONDERFUL news, after a long talk with our pediatrician he is recommending us for the Feeding Clinic in Grand Rapids. All of our paperwork and referral forms have been turned in, and now it is just a waiting game for the phone interview. After we pass the phone interview, we schedule our initial evaluation about six weeks out, then we start the program after being on a waiting list. We are not sure how long the waiting list is, it could be a year before we even get into the program! We are also still not very sure how all of the logistics of this is going to work, but at this point we gotta do what we gotta do!

After the long hours of cartoon watching, Lewis did learn something! If we say one, two, and pause he will say three! If we say A, B, and pause he says C. He also says George and bubbles really well now. Then if we ask him what does a dog say, he woofs and jumps up and down..so adorable! He is also signing and saying go all the time, his speech therapist taught him this one. Lately he has been obsessed with these blue Mickey socks, he takes them off and puts them back on..ALL DAY long!

Bath Night

2010-05-20T19:02:00.000-04:00

Can't get enough of that smile!

That's the cutest little doggie I know!

Trying to escape from getting his pjs on. Notice the two orbs in the lower right hand corner, I am pretty sure this little fella has quite a few Guardian Angels!

Mom why is Frosty in my bed? Ok I will give him a kiss!

His hand eye coordination is getting so much better! He is turning to the little pro at placing the magnets in the right spot, and he has even got a few of the animals matched up correctly.

He is getting to be pretty chubby! Not sure of his exact weight, I am thinking around 23 pounds. He has a doctors apt on Monday to discuss our feeding options, and how to move forward. I am sure I will get a new weigh in while we are there!

Blowing Mommy a kiss!

Showing Mommy where my tummy is!

Ice Cream

2010-05-17T21:55:00.000-04:00

Then when it seems like I have lost all hope, life turns the corner yet again. I will gladly feed this kid DQ ice cream cones for the rest of his life if it would make him happy! It is the little normal moments that families have with their children, enjoying an ice cream cone as a happy family on a nice night outside. I dream about these moments that other families get to have, and I am so glad that God decided that we finally deserved some too. God Bless DQ ice cream cones!

Lifes Theme Song

2010-05-16T14:16:00.000-04:00

So, so you made a lot of mistakes
Walked down the road a little sideways
Cracked a brick when you hit the wall
Yeah, you've had a pocket full of regrets
Pull you down faster than a sunset
Hey, it happens to us all

When the cold hard rain just won't quit
And you can't see your way out of it

You find your faith has been lost and shaken
You take back what's been taken
Get on your knees and dig down deep
You can do what you think is impossible
Keep on believing, don't give in
It'll come and make you whole again
It always will, it always does
Love is unstoppable

Love, it can weather any storm
Bring you back to being born again
oh, it's a helping hand when you need it most
A lighthouse shinning on the coast
That never goes dim

When your heart is full of doubt
And you think that there's no way out

You find your faith has been lost and shaken
You take back what's been taken
Get on your knees and dig down deep
You can do what you think is impossible
Keep on believing, don't give in
It'll come and make you whole again
It always will, it always does
Love is unstoppable

Like a river keeps on rolling
Like the north wind blowing
Don't it feel good knowing

This just seems to be our theme song lately, and whenever I just feel like quiting God just knows the right time to starting playing this song on the radio. I just feel as the rest of our lives is always going to be one step forward, one step back. Our NICU roller coaster days just seem to always be with us, and I wonder if we will ever be able to break away from it..or is it just our curse for the rest of our lives.
As I am sure you can guess things have been really tough lately with Lewis. Eating has basically taking over our lives, and not in a good way AT ALL. He is back to absolute total food refusal again, and turns into a holly terror whenever we even try to get him near a highchair. We finished up our feeding therapy sessions at Motts, and things were going really good for about two weeks. He slowly started turning the corner again, and is right back to where we started but even worse. I have no idea what is going in his little head, but I would just love a peak inside! I feel like we are in such a hard spot right now, because he is back to not eating/totally tube dependant..but we have no more therapy sessions left at Motts. At this point we are seriously considering the feeding clinic at Helen DeVos Children's Hospital in Grand Rapids. However, this is a very serious commitment, and I would basically be moving to that area for two months. I am not really sure at this point how we will accomplish this, but I am willing and ready to do whatever it takes to get him to enjoy food again.
Besides the eating issues, Lewis seems to be doing pretty good in all other aspects. He is walking just about everywhere now, except he is scared of grass and refuses to walk on it..weird I know! He goes twice a week for OT, Speech, and PT therapy, and I am definitely seeing a huge improvement in him. We are working really hard on him being able to sit still for longer periods of time, he has a VERY hard time sitting for longer than a minute. He needs to always be busy doing something, even if he is not doing a specific task he needs to constantly be moving or just being busy. He is definitely in the tantrum stage right now, and throws a fit just about anytime things do not go his way. I always say that I have a 21 month old that really thinks he is 21 years old! He seems to be catching up to his real age, and he is at about the developmental level of a 12 month old now. Whenever Lewis is alone by himself he looks great, but when you put him in a group of kids his own age you can just tell something is not right. I can not exactly point my finger on it, but he just seems different than the other kids...I am not really sure how to explain it..just something seems different. His speech is starting to take off, and he now says ball, dog, dada, and bubye. He is starting to wave, clap his hands, and blow kisses. If I smack my lips, and say Lewis can I have a kiss..he very much willing leans in and plants one right on my lips! It is just so precious to see. His favorite things at the moment are books! He can just go back and forth from the book shelf to my lap all day long reading those books!

Whenever someone asks how things are going, I like to nicely reply with "we have our good days, and our bad weeks." It is so true though! We are working on it though!

Happy Mothers Day

2010-05-09T15:54:00.000-04:00

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.
2. Because we’ve discovered patience we never knew we had.
3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.
4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.
5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.
6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.
7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.
8. Because we are strong. Man, are we strong. Who knew we could be this strong?
9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.
10. Because we work overtime every single day.
11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.
12. Because we are more selfless than other moms. Our kids need us more.
13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.
14. Because we inspire one another in this crazy blogosphere every single day.
15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.
16. Because we never stop pushing for our kids.
17. Because we never stop hoping for them, either.
18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.
19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."
20. Because, well, you tell me.

And I wouldn't change any of it for the world!

Bacon

2010-05-04T11:37:00.001-04:00

The Bacon boy doesn't like bacon? WHAT!!???

March for Babies

2010-05-04T11:27:00.000-04:00

What an amazing time at the March for Babies 2010! Thank you again to everyone that donated! Every step of that 3 miles was so precious, and we remembered how thankful and lucky we were to have our little miracle with us. Lewis was once again triumphant, and walked the finished line! I was so incredibly proud of him, and I think I am pretty much the luckiest mom in the world!

Infant Car Seat

2010-04-22T19:36:00.000-04:00

This was Lewis the day we brought him home in his infant car seat, on November 16th, 2008. As you can see he is swimming in his newborn winter coat, and had to have blankets to "prop" him in because he was still too small for the car seat.

Well, the other day we decided to dig the car seat out since we moved to the bigger one about a year ago. We thought that Lewis might still be able to squeeze into he car seat for quick trips in the other car, without having to move the other car seat or having to go buy another one. HAHA were we fooling ourselves! As you can see he clearly no longer fits into his infant car seat. I just think this comparison is hilarious!

Big Boy Bath

2010-04-14T19:47:00.000-04:00

So for the last 6 months, it has been complete hell to give Lewis a bath. I mean complete H E double hockey sticks Hell. He would scream bloody murder on the top of his lungs from the moment the diaper came off, to the second he was whisked out of the tub and wrapped into his towel. We tried EVERYTHING under the sun! Different water temperature, different toys, music, him wearing a onesie in the tub, playing in the tub with no water, sitting in the tub with him, different soaps, turning the heat in the house on 100 degrees, the sink in the kitchen, a new tub matt..when I say that we have tried everything I mean we had tried everything.

Then just one day, BAM!, he loves the tub. No more tears, he was all giggles and laughs. Now it is hard to keep him out of the tub, it is his favorite hang out spot now..even with no water!

We have just determined that Lewis is not a "winter" baby! As soon as the weather started turning nice, he stopped crying and turned nice himself. I suppose its amazing what the weather will do to ya! Until the winter blues hits Lewis again, we are going to soak up all the tub fun we can get. His favorite thing to do is go under the running water, and clap causing water to splash every where!

Easter and GI update

2010-04-08T19:39:00.000-04:00

Easter was FANTASTIC! It was so much fun watching Lewis get the idea of opening presents, and actually wanting to taste a bit of chocolate! It was such a blast seeing his face light up like a Christmas tree, and just shriek in excitement over the little trinkets he got!

I am having an issue uploading pictures so you can go here to view them:
http://www.facebook.com/profile.php?id=520890120#!/album.php?aid=416348&id=520890120

Today we went and saw the GI doctor, and he was surprisingly very happy with the way that Lewis is growing and developing. He was SHOCKED to hear that he is eating about 8 oz of baby food a day, and gave Lewie a very big high five! I quickly chimed in that he still is not drinking or eating table foods, but he was also very quick to remind me that Lewis has come so far with eating in just a few short months..baby steps it is all about the baby steps! However, Lewis still has swamp butt and wretching. So we have put him back on Prevacid to see if that helps the wretching. We are also doing a stool sample to test for a certain parasite called Giardiasis. As much as one hopes for a parasite, I actually am, so that we can after months find a reason for Lewis to literally have swamp butt. We also are going to try and increase his calories by putting Duocal in his baby food. In one tablespoon of this powder it has 84 calories, so it is going to be a huge increase of calorie intake to get this in his system. We are adding the Duocal, because he has only gained two pounds since December. Two pounds would be great for a normal child, but once we are not normal! So for a failure to thrive underweight kid, two pounds is really not where we need to be.

This is also going to be a very big week for us, as Lewis starts a new therapy program at the Ann Arbor preschool. He will now be getting OT, speech, and PT through a class room like setting on Wednesday afternoons. This is to start prepping him for a class room like setting, and increase his social awareness since other kids will be getting therapy along with him. I am very excited for this program to begin, and am looking forward to Lewis growing even more. I can not even believe I am already starting to think about preschool...really are you kidding me?

The Charts

2010-03-30T09:48:00.000-04:00

Lewis has never even been somewhat close to touching the bottom line on the charts, he has always been so far off in outer space no chart land. I quickly learned to forgot about percentiles, and have never really asked where he even landed on the chart. However, at a recent doctors appointment the Nurse informed me that Lewis was ON THE CHART, he has made it into the 5th percentile for weight and the 10th for height. We are on the chart!! OK so honestly I have no real idea what the meaning behind the chart is, or why we freak out over percentiles. However, I suppose I better start brushing up on my chart language and skills!

Once again I suppose it is the little things in a preemies journey that makes us all happy!

By the way check out those pretty pearly whites!

Easter Spring Pictures

2010-03-29T10:17:00.001-04:00

Make video montages at www.OneTrueMedia.com

Cry Baby

2010-03-29T09:47:00.000-04:00

This is only to show you that yes he is cute, but no he is not all innocent. This boy knows how to turn on those water works like no other, he is already a pro at fake crying! Then that lip, look at that pouty lip! Are we going to be in trouble or what!? It's a good thing he is pretty darn adorable though! :0)

Easter Egg Scramble

2010-03-28T20:39:00.000-04:00

On Saturday, Lewis was apart of his first Easter Egg Scramble! It was so much fun to watch the excitement on his eyes as he gathered brightly colored eggs in his cool football basket (Thanks Grandma and Grandpa Cohrs). He was very curious about the Easter Bunny, and no tears were involved (Thank goodness!). Of course his favorite part was seeing the real Fire Engine, it broke his heart when we had to walk away!

Then the most exciting news comes! LEWIS IS WALKING!!! He is still pretty unstable, so daddy was supporting him at the park. However, he is getting very good at taking about ten steps falls on his tush then gets right back up and does it again. I am so incredibly proud of my little buttercup! He is just so precious, and what a miracle it was indeed to see him walking!

Thomas and Frosting

2010-03-22T09:40:00.000-04:00

Lewis LOVES trains, and well basically anything with wheels. He will sit and spin the wheels on a little car all day long, he is obsessed with anything that spins...trains in particular. He carries this Thomas DVD case all around the house, and will not let go of it..he even HAS to carry it into bed. I suppose whatever makes him happy..right! I guess it is a good thing that we booked a mini choo choo train for his big 2nd birthday bash! I can only imagine the look on his face now, he is going to be so excited!

We also celebrated the end of Synagis shots! Lewis got some tastes of yummy frosting from the cupcake, and was allowed to pick out one ten dollar toy from the store. Of course he picked out this fire engine that only says "Lets put that fire out." Then comes the loudest most ear ringing fire engine siren...and it does not have an on/off switch. However he loves this thing, and you would of though you gave the boy the world. I suppose getting two extra shots a month for the past few months makes you a pretty special boy! Shots are no fun but we sure can celebrate the end of them! He will not be getting them next winter season, so I am a little worried about the severity of RSV hitting our home. However, we will deal with that then, and now we will just celebrate!!

Eating is still going so so. We have an appointment with our favorite Dr. Leo today to discuss his Asthma and Lactose Intolerant issues. We have not been following a dairy free diet since we started up the food by mouth, so we are thinking he is having a ton of stomach pains which could be causing him to not want to eat anything. Plus Lewis is still doing a ton of wretching, which we though we would be able to control with inhalers (we think the wretching is asthma related). So we shall see what the Dr. says!

How you seriously deny this adorbale face though, he sure does have personality that is for sure!

Two Steps Forward and One Step Back

2010-03-19T21:00:00.000-04:00

Well it has not even been a week since our great he's eating post, and I regret to inform you that eating is not going as well it had been. Actually things are worse than before, and I am pretty much at my breaking point with the whole thing. He is again refusing all foods, throwing tantrums, hitting/swatting at us, screaming, and pretty much acting like a holly terror. I hate seeing him like this, as he only acts like this when it is feeding time, then turns into a complete sweetie pie right afterwards. His feeding therapist had the guts to tell me today that she thinks this is all behavioral and not an oral aversion now, and his tantrum behavior is not typical of a toddler (I pretty much cried for about three hours after this...*sigh*). I find this hard to believe, as all I hear about are terrible twos..Lewis is just maybe hitting that stage a bit early. Like I said he is only doing these things during feeding time, then returns to the typical little Lewie that we all love and adore. We've tried ignoring the behavior, but it does not help it just seems to get worse and he has screamed for an hour straight before. He does not yet understand the word "no" yet either, because of speech delays. These feeding behaviors have also only started since we have been pushing the eating thing more, and doing three meals a day. So is he trying to tell us something? Is he too overwhelmed? Over stimulated? Is he trying to tell us that eating hurts his tummy? Ear infection? Teeth? I have no idea, and I wish the answers would come easier for us...I am sort of tired of the guessing games. So where do we go from here?

So does anyone have any parenting advice on how to control/discipline a toddler, because apparently I failed....

Chowin' Down

2010-03-09T21:57:00.000-05:00

Guess what??
Lewis is eating! Woohoo! He has for the past two weeks three times a day, and he eats an entire jar of baby food at each sitting. I am not really sure what happened in his brain, but I definitely think that someone came and had a little talk with him in his dreams then the little light bulb turned on. It really is amazing for him to go from eating nothing to three jars of food a day. His feeding therapist was very impressed with his improvements and gains..and well so are we! He still has as long ways to go with drinking from a cup, this week we are going to start working on that with the straw cup. Then eating more "table" and toddler type foods. However, at this point I will take anything! This definitely takes a huge weight off of our shoulders, as a few nights before he started eating I googled Childhood Schizophrenia, because I was so determined to look for answers. I am pretty sure he does not have Schizophrenia, but I am pretty positive he has an imaginary friend already. During eating time he keeps turning to the side of his highchair starts babbling and offering food to the air...it is pretty strange behavior. However, we love him just the way he is!

Lewis has definitely landed himself in this chair on a few occasions, meet the new time out chair and spot! Yes he still fits into his bumbo seat!

Lewis loves to play fetch. Yes fetch like what a dog would normally do. We toss the ball, and Lewis goes crawling for it then brings it back to us. Adorable to say the least..you betcha!

Lewis is standing by himself! He has even attempted to take a few steps on his own, but no unassisted walking just yet. We are working on it though!

Our NICU photo journey

2010-03-01T20:06:00.001-05:00

Make an on-line slide show at www.OneTrueMedia.com

Our Story

2010-02-28T22:04:00.000-05:00

I have been wanting to write down our pregnancy and NICU story for a while now, as I really only started writing in this blog since he has been home. With the March of Dimes walk quickly approaching, I figured this was a great time!
So here it goes:

We found out we were expecting Easter weekend in 2008, and we were completely shocked! Shocked really is probably an understatement, as we were not even trying to get pregnant, had only been married for about seven months and were still figuring out the whole husband wife thing. But we embraced the new challenge, and told our families who were very over joyed for the birth of baby bacon! My pregnancy was not normal even from the start...I never had a single ounce of morning sickness. Jealous..I know! At 10 weeks I had very severe stomach pains and was bleeding, so we rushed to the ER for the first time. We found out that I had placenta previa, which basically means that the placenta was attached to my cervix. I was told that about 75% of the time it resolves on its own, and that it was something that we should not be really worried about. I was told to take things easy, and enjoy the changes my body was about to take on. At 14 weeks, we were to find out the sex of our surprise baby. We found out it was a boy! However, at this appointment we were also told that my placenta had not detached it self from my cervix, and that I had very low amniotic fluid in the sack. The technical term for this is Oligohydramnios, and it basically means that the baby did not have enough fluid or nutrients for it to grow and flourish. We were told that our baby had about an 65% chance, that he was going to be born with mental or physical handicaps. We were crushed, but did everything we could to keep positive.

At 25 weeks is when everything turned the corner for us. For about two days I was feeling horrible, I thought that I had come down with the flu. Or worse..maybe I finally got the morning sickness, and it all came at once..which meant it was going to be 100 percent worse than normal. I finally went into the Hospital, and was admitted immediately due to my blood pressure being 250/100. I was at severe risk for a stroke, losing the baby, and possible death for myself. The next few hours were a complete whirlwind, and to be honest I hardly remember any of it because of the Morphine. After several blood tests and observations, I was officially diagnosed with severe Preeclampsia and HELLP syndrome. For more information on HELLP syndrome please visit, http://hsc.virginia.edu/UVAHealth/peds_hrpregnant/hellp.cfm. I was very very sick to say the least, and was given a fifty percent that I was going to make it through the surgery. We were admitted into St. Joes at 11 am, and by 8 pm I had a emergency classical c-section. Lewis William Bacon was born at 1 pd 4 oz, and was only 12 inches long. I was completely under for the surgery, and did not get to see him be born nor did I have my husband holding my hand through the whole thing. Jeremy got to see Lewis about two hours after he was born and stabilized, and then we did a baptism on him. I was unable to see Lewis for about 24 hours after the surgery, because I was still fighting for my own life. When I did get to see Lewis I was still unable to sit up in a wheelchair, so I was wheeled into the NICU in a stretcher. I spent five more days in the hospital, and was finally able to go home..but had to leave my little baby boy behind. That was the hardest moment of my entire life, and I will never forget the strong emotions that ran through my body that day. We had to wait an entire week to hold him in our arms!

Lewis had a very rough NICU course! Here is what he endured and was diagnosed with:
1. IUGR/SGA. Intrauterine growth restriction (IUGR) is a term for a baby who is smaller than normal during pregnancy. The baby is not growing at the normal rate inside the uterus. This occurred from the low amniotic fluid that I had from week 14 until I delivered. This also meant that even though Lewis was at 25 weeks gestation, is weight and development were only of a baby at 22 weeks.
2. RDS. In RDS (Respiratory Distress Syndrome), the immature lungs don't produce enough of an important substance called surfactant. I was given one shot of steroids before he was born to help improve the quality of his lungs. Then, immediately after his birth and several times later, artificial surfactant was given to Lewis to help improve his lungs. Lewis was on a Ventilator for about 45 days, and several of those days he was on an Oscillator. He then graduated on to a CPAP for about 40 days, and then graduated to the nasal cannula. However he was incubated several times to replace the cpap to ventilator, it was always a guessing game to see if he could handle it. This caused very horrible scarring of his lungs and throat. He went home on oxygen, and needed a nasal cannula for feeds. Now Lewis has officially been diagnosed with Asthma, and is on two inhalers every day. Advair in the morning and at night, and an Albuterol during the day when he is active.
3. Grade 2 IVH Bilaterally. This thankfully has resolved on his own, and no shunt was needed. However, this is what has caused his developmental delays, and we are still playing the waiting game to see if the brain damage has caused any other life lasting issues. Lewis gets physical therapy and speech therapy to help with his developmental delays. Even though Lewis is 18 months old, he is performing like a 9 month old.
4. ROP. Also thankfully this resolved on its own, and no surgery was needed to correct his eyes. However, last April at the eye doctor we were told that he was far sighted. We go back to the eye doctor in a month to see if glasses will be needed.
5. Feeding difficulties. HAHA if you are a dedicated reader then you are aware that there is no surprise here. Lewis never caught onto the suck, swallow, breathe thing, and also has the most severe form of GERD. Lewis also has a very sensitive stomach, and all of the nerves in his tummy never fully developed. This causes issues when he is trying to eat, because his tummy basically freaks out whenever food is trying to be digested. He also has delayed stomach emptying. Because of these issues, Lewis has a gj feeding tube which he gets feed 24/7 through and refuses to take anything by mouth. We recently have started a feeding program, to get him eating things orally.
6. Apnea of Prematurity. Lewis was no stranger to have lots of A's B's and D's in the NICU! Fortunately this has had no lasting impression on him, and he is apnea free!
7. Staph Sepsis Infection. Unfortunately Lewis went through two of these infections in the NICU, and was very very sick from both of them. Lewis even dropped below a pound at one point from being so sick from these infections.
8. PDA. Thankfully after receiving two rounds of medicine his PDA closed, without surgery. He is currently heart trouble free, however we believe the PDA being open at birth has caused him some of the feeding issues.

Along with this Lewis also was Jaundice, and spent an entire week under the Billirubin lights. He has received well over ten blood transfusions. He also has torticaulus, and the right side of his head is still flat. He had a very hard time keeping his body temperature, and spent almost two months in the Isolette before he was moved into an open crib. This limited our time holding him, and we spent much of our time holding his tiny hand through the Isolette holes. Lewis also had an umbilical cord hernia, and was fixed when he had his feeding tube and nissan surgery in July of 2009. He also has a very week immune system, and we have to be extremely careful of germs and sicknesses.

Lewis spent 96 days in the NICU.

HOWEVER, even though Lewis has seriously been through so much more than any other human could possible imagine..he is here..HE IS HERE! Wow what a journey! We wouldn't have it any other way though, and we are so grateful that our journey has inspired us in so many ways. Never does a day go by that I think what if, and I am so thankful that God was on our side and let us keep our little boy. He does work miracles!

TV

2010-02-24T14:03:00.001-05:00

Before Lewis, I was the kind of person that said I was NEVER going to plop my kid in front of the TV for entertainment. HAHA was I kidding myself! When you have a child that needs constant entertainment from sun up to sun down, then an hour a day of cartoons is seriously heaven sent! Right now Lewis loves Clifford the Big Red Dog, Word World, Sid the Science Kid, and The Mickey Mouse Club. These shows are amazing though, and I give the writers some major kudos. It makes me feel a little less guilty when he might actually be learning something like letters, numbers, and colors.
So today on Thankful Wednesday I am so grateful for the Television!
Philo Taylor Farnsworth (the inventor of the television) you da man!

P.S. I love Lewis's new smile, totally cheese face! So stinkin cute!

Enjoying the snow

2010-02-18T09:19:00.000-05:00

Lewis LOVES the snow. I would definitely say it is in his top five favorite things list! Every time we are outside and the snow is falling he reaches out his hands and tries to catch the flakes, and dad has taught him how to catch a few on his tongue! Then when we are driving in the car, he is always looking out the window "oohhhhing" at the snow! I swear this boy is going to live in an igloo in Alaska some day!

We decided to take a family walk in the bitter temps, and enjoy some snow fun!

How much is that doggie in the window?

2010-02-14T21:17:00.001-05:00

Meet the newest member of our family, Frosty, who is a four month old Bichon pure breed! He is just the sweetest most mellow little boy ever, and as you can tell just one huge fuzzball! The best part is that he is shed free, which is great for our asthmatic child. We knew it was love at first sight for all of us. Then we knew he was a keeper when he ran right up to Lewis, and just started licking his face and Lewis giggled like crazy.

Here's to new doggy training adventures!

Happy Year and Half Birthday!

2010-02-13T10:27:00.001-05:00

It's amazing how you can speak right to my heart
Without saying a word, you light up the dark.
Try as I may I could never explain
What I hear when you don't say a thing.

The smile on your face lets me know that you need me.
There's a truth in your eyes, saying you'll never leave me.
The touch of your hand, says you'll catch me wherever ever I fall.
Now, you say it best when you say nothing at all.

All day long I can hear people talking out loud
But when you hold me near, you drown out the crowd.
Try as the may, they could never define,
What's being said between your heart and mine.

The smile on your face lets me know that you need me.
There's a truth in your eyes, saying you'll never leave me.
A touch of your hand, says you'll catch me if ever I fall.
Now, you say it best when you say nothing at all...

Toes

2010-02-07T12:47:00.001-05:00

Hmm maybe toes taste yummy?

Our first feeding clinic appointment, went so great..well beyond great more like exceptionally wonderful amazing..and all that good jazz! I saw for the first time him actually pick up a puff and place it into his mouth, something that he has never done before for us. This means that his fine motor skills are improving, he is able to do the finger pinch move now. He played and made a huge mess with applesauce, and then ate some puffs. It was great! As parents we definitely learned that his issues are trust and control, he has a hard time trusting food and he has to have control over everything that is happening with the food. He wants to feed himself on his terms and on his time. Looks like we have a sixteen year old in the making!

The hat

2010-02-05T21:32:00.000-05:00

This picture was taken in the NICU, when he was only 3 weeks old. He was just under two pounds, and his nurses bought him this hat for Tiger day.

This was his newborn/three month photos that we had done, two weeks after he was home from the NICU.

This photo was taken over the summer when he was still so little, and only ten months old.

This was taken yesterday, and he just hit twenty pounds.

MY OH MY HOW HE HAS CHANGED!! This really does put things into perspective.

Food and Teeth

2010-01-29T18:19:00.000-05:00

(Sorry about the picture quality..I had to take the picture with the camera on my phone)
Nonetheless...Lewis licked all of the salt off of a chip! HOLY COW BATMAN! It was a miracle, and yes mommy cried some big fat tears! Until Lewis discovered that if he squeezed the chip really hard in his hand, he could break it into a million little pieces..and well that became much more fun than licking the salt off.
Of course our little stinker decided to do this the day that I finally got the call that we were accepted into the feeding clinic at the University, and our first appt. is Feb. 5th at 3 pm.
However, one of the Neonatologist that cared for Lewis in the NICU called me the other day to tell me about another amazing feeding program. However this one is in Grand Rapids at the Helen DeVos Childrens Hospital, and has a success rate of 95% with the kids. The link is here http://www.devoschildrens.org/body.cfm?id=1168
It is a very intensive program, and the patient and family need to stay at the hospital for eight weeks to complete the program. It takes a few months to actually get into the program, but it is something that we are very heavily considering. However, we have no family to stay with in Grand Rapids and a eight week hotel stay can be very expensive..so keep a lookout for some up and coming "Lets get our little Bacon to eat" fundraisers. Pizza kits, suckers, calenders, candy bars..here we come!

Warning please ignore the booger in his nose.
Oh you saw that one right! Lewis got his first tooth! It is about time, I was really getting to the point of being worried and was about to call up the Dentist. Of course it is only the one tooth, but I think the other one is close behind..until then his new nickname is snaggletooth!

Recent Happenings

2010-01-17T21:50:00.000-05:00

Lewis is completely smitten by his cousin Brooke! I have been helping out my Aunt and Uncle a few days a week by watching little Brooke who is three months old, and her brother Brady who is four. Lewis loves to try and help out with the baby, and in particular he LOVES to give her the binky. He has become quite a pro at getting it right in her mouth! Some days I get a bit sad, because I see how great of a big brother Lewis would be..and I feel so sad that I will not be able to give that to him. However, once again the plans for adding on to the Bacon family is in Gods hands. However, I am enjoying my time of snuggling with Brooke and giving back! Its great! :0)

By the way check out the second picture! Lewis is almost standing on his own without assistance, and with the backpack on! This little man is going to be a serious quarterback with those strong shoulders he is building. He is still not walking yet, but getting close. In the next month the physical therapist is probably going to recommend a type of braces for his feet. The reason for this is because he has very flat feet with out an arch, so he stands on his toes to try and create an arch for him walk easier. The problem with this is that he is not coordinated enough, and does not know how to keep his balance enough to walk on his toes unassisted. The braces will hopefully add some arch support, and will make walking easier for him to accomplish. I am actually excited for this next move, and am looking forward to being able to run after my baby.

My brother, and Lewies Uncle Jon has decided to start a new adventure in his life! He purchased a one way ticket to Vegas, and is looking not looking back..well not anytime soon. We will miss and love you Uncle Jon! Thanks for making your nephew laugh like no one else can!

Lewis got his second hair cut, and looks like an actual toddler now. I can not believe how darn cute that kid is! I have a feeling that we are going to be in some serious trouble in the next few years, the girls are going to be chasing him..BIG TIME! Trouble here we come!

The results for the swallow study were inconclusive, because he would not swallow enough to get an evaluation. It was the worst hour of my life, as he screamed harder and harder every time they tried to shove something into his mouth. He kept reaching for me, and I could not stop them from causing him grief...and it broke my heart. I felt like the worst parent ever, because the occupational therapist kept asking me how to feed my own child..and I had no idea how! I am not really sure what the next step is.

Good Vibrations

2010-01-04T19:31:00.000-05:00

Lewis is doing great working with the play food these days! He has even learned to put a spoon into a cup, and then bring the spoon to his mouth..like he is actually eating something. Too bad he is way too smart for his own good, and mom can not trick him with actually putting food in the bowl. Good thing he is so darn cute, kind of makes up for it all! :0)

We are also working hard on messy play, the idea that we let him play with real food with his favorite toys. The hope is that he gets used to the textures in his hands, and then with fingers crossed puts some into his mouth on his own terms. He has probably gotten about three or four bites in his mouth with the messy play, which is HUGE improvement. But as you can see it is VERY messy! Like I have said before we have all boy on our hands, so the more the mess the more he is happy! This only means that baths usually occur every night now, instead of twice a week. We have the swallow study scheduled for January 11th, at our favorite hospital Motts. If we are unable to get him to swallow anything to have a good evaluation, then he will be put under general anestisa, and the scope with the camera. This test will hopefully give some insight on why he is having such a hard time swallowing foods, and doing the whole wretching/gagging episodes. Which by the way have returned about twice a day, so switching to the gj tube made no difference what so ever. If we are unable to find anything abnormally wrong with this throat and espoghaus muscles, then I really am not sure what direction we will be going in next. My though is maybe his sinuses, because he does snore really loudly for a toddler. Who knows though, my conclusion is that science is all still a mystery!

Lewis is on the move more and more these days, and is a little speed racer. We have caught him discovering things around the house!

Happy New Year

2009-12-31T21:01:00.000-05:00

Wow what a difference a year makes! I would certainly be lying if I said that 2009 was an absolute breeze..HAHA not! This past year was a struggle, and it really tested my faith on a number of occasions. But I can say that I made it through my first year of motherhood, and I am proud of myself! I can not even remember the number of hospital trips we made this year, the number of times I went to bed crying myself to sleep wondering how we were going to make it, praying to God and asking why us, and how many times I just wanted to throw my hands up and just give up. I wanted to, but I never did! However, I can also say that I can not remember the number of times I got butterflies in my tummy from getting Lewis up in the morning, the number of times I laughed so hard I cried from a little boy that does not even talk, the number of times I thanked God for bringing purpose into my life, and the number of times I just smiled for no reason at all. I can honestly say that if we made it through this year, than no matter what happens in 2010 it will be a breeze!

I hope that 2010 brings more moments of joy, and brings us even closer as a family. I pray that God has some great plans for us in our future!

Happy New Year!

Christmas 2009

2009-12-30T21:04:00.001-05:00

Make video montages at www.OneTrueMedia.com

Merry Christmas

2009-12-23T20:25:00.000-05:00

The gift of happiness. The gift of peace. The gift of love. May all of these be with your family this holiday season. HAPPY HOLIDAYS!!
Love,
The Bacons

Weight Check

2009-12-16T21:24:00.000-05:00

Lewis has finally hit 19 pounds! WooHoo! Even though I am convinced that an entire pound of it is his hair alone.

Merry Christmas Mama!

It still amazes me how excited we get over a few ounces of "fat"...how do I join this club?

The Duggars

2009-12-14T08:18:00.000-05:00

I read this blog post of another mirco preemie mom, and just HAD to repost it here. She hit it right on the nail, and all I have to say is "AMEN SISTER!"

http://eliza-grace-micro-preemie.blogspot.com/2009/12/resting.html

I unfortunatly do not see anything "restful" about this situation.

Hair

2009-12-12T19:52:00.000-05:00

And you thought you were having a bad hair day! PSSHHH!

Lewis as of late

2009-12-11T21:22:00.001-05:00

Lately Lewis really loves the butterfly at the end of the hungry caterpillar book.

Lewis is REALLY into spoons lately. LOVES THEM! It has to be the metal ones, no way hosay to those silly plastic ones!

Daddy taught Lewis how to stick his tongue out..cute real cute..huh!

Last but certainly not least, Lewis is walking! Well it is with a push walker, and if you look closely he is definitely toe walking (a big no no to the pt people). BUT he is doing it! Gosh I myself can hardly believe it! Once again every time he does something that we were told to prepare ourselves for the idea that he might not, I just want to shout to the mountain tops. He really is incredible.

Photo and video editing at www.OneTrueMedia.com

Just Because

2009-12-09T21:43:00.000-05:00

I miss him being that little. He is only 16 months now, but I can hardly remember him being that teeny tiny...

I wish I would of breathed in and remembered every single precious moment when he was little, instead of freaking out over every little thing that could go wrong. I wish I would of appreciated more how precious he was and loved him just the way he was...instead of wishing for him to get bigger and "outgrow" the preemie problems.

It really is true they grow up WAY TOO FAST!

Home and Sick

2009-12-01T20:06:00.000-05:00

Lewis was offically dedicated into our church on November 21st, and we were so overjoyed to have spent it with our close families. Lewis has about six bibles now, and he sure has alot to be thanking God for! A special thank you to Uncle Jon, who we asked to be Lewis' godparent. I am hoping this will create a special bond between them, and become role models for each other. I am so filled with cries of love to God for giving us this special moment. Lewis was originally baptized about two hours after he was born in the NICU, and unfortunatly because I was fighting for my own life I was unable to attend. I am so glad that I was able to share this moment with my wonderful son, and show him how proud of him I am. It is all just bittersweet, as the dedication was just one day before my original due date.

We also drove nine hours to St. Louis to be with Jeremys parents for Thanksgiving. This was our first real family vacation, and the first week that Jeremy has had off since we brought Lewis home from the NICU a year ago. Needless to say we were way over due for some good quality relaxing time. We went to the zoo, which was awesome, and Lewis became friends with the Ape. No seriously he did. We walked up to the ape exhibit, with about ten other kids were around at various windows, the ape saw us run up to our window and plopped down right in front of Lewis. They were babbling away at each other like they were good old pals, and I have to say it was THE coolest thing that I have ever seen. We also saw the arch, which was very neat, and Lewis pretty much ohhhed the whole time looking through the windows. Lewis also saw Santa for the first time, and rode a carousel for the first time. Both of which were complete hits. I due have to admit I had to catch myself a few times from weeping, because I just can not stand the thought that my little one pound baby is actually old enough to like riding a carousel. Thanksgiving turkey was delicious as always, and Lewis enjoyed playing in his pumpkin pie. It was a great time, and we are so glad we got to see some of our amazing family! Grandma and Grandpa thank you so much for making sure we had an amazing time, we appreciate it more than you will ever know! THANK YOU!

Unfortuntly our ride home was less than joyfull with a child that screamed for about 6 hours of the 9 hour trip! So amoung our many firsts lately, Lewis also has his first real cold and ear infection. The doctor said that it was the worst ear infection that he has seen yet this season. Yay way to go Mom! Hopefully this will all run its course, and be over with soon..and not land us in the hospital..again. Oh boy I hope I didnt just jinx myself...again.

And for all of you who like some giggle room. When we got back from our vacation, waiting for us in the mail was our latest and greatest hospital bill from Motts. It was 16,000 dollars..yes you heard me right...16,000 dollars for a hour surgery, a few hours in the ER, and an overnight hospital stay. Holly cow batman! We are very grateful that we have three health insurances for Lewis, his primary Hap, Medicaid and Childrens Special Health Care Services. This does cause a bit of frustraion as I am still on the phone about two hours total each week arguing with the accounts payable departments at the hospitals and docotor offices. As billing each one is confusing, and as to which insurance covers what services. However, we are so very lucky that since our little miracle boy has been born, we have not had to shell out a single penny for any of his care! I can say hellelujah on that one..can I get an amen?!

Happy 1 year home from the NICU day!

2009-11-16T10:38:00.001-05:00

Lewis was 96 days old, and 5 pds 9 ozs.

Lewis is now 15 months old, and 18 pds 11 ozs.

I look upon your face and I wonder
How I ever gave birth to someone of your strength.
You’ve faced adverse conditions in your life,
You’ve climbed boulders the size of mountains,
But you’ve survived when many did not.

You will never know how proud I am of you, my son.
You will never know how hard your struggle was to watch.
I’ve cried many a bitter tear

Wanting to take your pain but unable to do so.
Now I cry tears of happiness for I see joy in your life.
You have your life and you are living it to the fullest.
You now see the future and it is good.

Oh you will have occasional pebbles,
Possibly a boulder or two
However, none will be as tall as you’ve conquered.
So you will climb them with ease.

So be safe my son and know I am always there
I’ve stood by your side whether or not you remember.
I’ve always been there, open to you, wanting you

So dance my child, dance.
For the world owes you joy and peace.
Look out on your valley and see the world
As it should be, not as it is.
And know I will love you forever, and forever…

Oh My Oh My Oh My!

2009-11-14T21:22:00.001-05:00

So nothing like another hospital stay and surgery to already add to our busy chaotic lives! Monday nights are our usual bath night for Lewis, all went well Daddy and Lewis had a great time splashing each other in the tub with the rubber duckies. Until we placed him on the floor to put a clean diaper on him, and all hell broke loose! We heard this very loud noise like someone let a balloon go off, we both looked at each other and said that does not sound good. Only to look on the floor, and see the feeding tube, and Lewis laughing away. We knew that we only had a short time before the hole started to close back up, so we needed to rush to the ER. Thankfully they got us back right away, and placed a dummy tube in his stomach to make the hole not closed. Since we have the GJ tube now, that needs to be placed back in with surgery. So back under the knife we went, and a horrible nights stay in the hospital. When the tube fell out, so did allot of stomach acid which basically burned his stomach. We could not give him anything for the pain, and so forth he screamed bloody murder for about ten hours straight. We couldn't give him anything, because he will not take anything by mouth and we couldn't put anything down a nonexistent tube. We also could not placed anything down the IV, because they were not sure when he was going back to the OR with sleepy meds. So after 24 hours back in the hospital, we came home with a new tube, some stitches and a really bad rash/burn all over his stomach. What an adventure! Mom only made it worse by throwing on a Michigan State sweatshirt when we were rushing out the door to the ER, and did not notice until the doctor came in and literally snarled at me..before even asking how our kid was. Way to go Mom!

However, we still managed to attend the 5th annual NICU Fashion Show, and had an absolute BLAST! It was so nice to get all glamorous up for the night, and celebrate the birth of our little miracle baby! We got to see some other amazing families that we became close to in the NICU, as well as once again thank the remarkable doctors that saved our sons life. I am so excited to see how much money we raised for such a great cause, it was the perfect way to start off the holiday season.

With that said yes I have all of Lewis' xmas shopping done, and Santa definitely out did herself this year! I am entirely way too thrilled to back cookies the night before, decorate the tree, watch a Charlie Browns Christmas, and open gifts the morning of. I am couting down the days like a kid all over again!

However, we do always save the best news for last. Lewis is officially pulling himself up to standing! I found him in his crib standing laughing hysterically the other day when he was supposed to be napping! I have a feeling trouble is right around the corner.

Busy Bees

2009-11-06T20:29:00.000-05:00

Complete chaos is the way to describe our lives these last few weeks! So here is a quick run down of what has been going on in with the Bacon's!

The surgery on November 2nd, went better than anyone would of ever expected. He had his gtube switched to a gj tube, and his Nissan Fundo wrap was loosened up. The day started a bit early for us at 5 am, but Grandma and Grandpa came along for the adventure so Lewis was bright eyed and smiling the whole time. He did not cry a single tear, and enjoyed watching the Disney channel in recovery while trying to stick stickers to every single part of his body. He did awesome on the sleepy meds, and the ventilator was no issue with him this time. They even were actually able to find a vein for the IV right away, usually they have a very hard time from all of his previous pokes. On a side note, I can go all around his body and find tons of scars from spinal tabs, pick lines, and IV's..I find it a bit sad to see. However, ever since the surgery, he has not had a single wretching episode and the tube has not leaked once. This is EXCELLENT news!! We have slowly increased his feeds over the past few days to 33 mls per hour, which is the rate he was on before, we did this slowly to make sure that he could handle it. Also, because he has been doing so great we have been given permission to slowly increase his rate all the way up to 50 mls per hour. If he can handle this, then we are able to take him off for a few hours a day to start the feeding clinic at the University. We are greatly anticipating this, and having our lives get back to a somewhat normal routine not involving medical equipment.

Lewis has been talking up a storm lately, well as much as an infant talks, but gooing and cooing and oohhing at just about everything. He officially says dada, itty, and mama now. I was so filled with the joy the first time he said mama, it was the best gift ever. I am also pretty sure I heard him say book the other day, but he hasn't said anything since so maybe it was me going crazy...

Developmentally he is just soaring! He is crawling all over the place, and likes to use us as his personal jungle gym. I think some future trips to Jungle Java and Urban Toddler are in our near future. He is moments away from pulling himself up to standing, he has the coordination right just not the strength in his arms. I think walking by Thanksgiving, might not be too off! He is also reaching for us all the time, and pointing at everything. He has discovered cars and trucks now, and is really turning into all boy! He loves to turn pages in books, not read them, just turn the pages. :0) Our little man has also already enjoyed watching a few football games with dad on the couch, future quarterback?! He is around 18 pounds, and finally into 12 month clothing. He even fits into some 18 month pjs we had!

Halloween was such a blast! We went trick or treating with some of his cousins, and he was the cutest Tigger! Seriously even all covered up in a costume, and blankets we could not stop hearing how cute he was. He even got the concept some what, and loved holding out his bucket to collect some yummy treats.

The month of November is absolutely crazy for us! There is not one day on the calendar that is already not jam packed. We have the NICU Fashion show, Lewis' child dedication service at our church, our Thanksgiving trip to St. Louis. Then not to mention our normal therapy sessions which we do twice a week, our weekly play group, we have a developmental clinic assessment, his 15 month appt with shots, synagis shots start back up (which we were very grateful that we got approved once again this year) a GI clinic followup, a flu clinic, and Ped Surgery follow up. Then not to mention that we are supposed to start going into hibernation from all sickness that will be floating around real soon. Is that enough for you! If the month of November does not kill me, it shall only make me stronger!

Happy Halloween

2009-10-31T09:52:00.000-04:00

HOLY COW!

2009-10-30T17:28:00.000-04:00

Lewis just ate FIVE bites of sweet potatoes!! It is also very important to mention that this was not forced, he did it all on his own!! WOOHOOO!

The power of believing, it does indeed work!

I am on top of the world, and couldn't be more proud!

Noah, Lewies best friend, taught him how to pull up on to doors and BANG BANG BANG away! It was very cute at first, however it has now cost him his first ever time out last night.

It is also very cute to note, that Noah was born November 16th the same day that Lewis came home from the NICU. Lewis is such a little peanut compared to him! It is so funny to watch them together!

Happy Fall

2009-10-29T19:16:00.000-04:00

P.S. Check out his cute little chunky belly! Maybe leaves might taste good..hmmm!?

Cheese

2009-10-26T19:40:00.000-04:00

The image of us feeding a hungry child begging for cookies, drinking juice by the gallons, and banging his spoon on the table screaming "food" is nonexistence in our house. Lewis is still on continuous 24/7 feeds of peptamen jr formula through his g tube. It has been such a struggle to get him to eat anything, let alone just take a sip of water from a cup. So much so that I have packed away the bottles, and probably will not need them anymore. This is definitely not the way I ever imagined the big move from bottle to sippy cups. However, we having been working so hard with him lately at home to get him to just lick food. All we ask for is a simple lick, and we have gotten him to do so with vanilla ice cream and potato chips.

Tonight folks that all changed! Lewis ate a piece of cheese! Daddy came home from work, and was snacking on a piece of cheese while Lewis was chilling in his high chair. Lewis very intently starring down the piece of cheese, following it from dads hand to mouth. So we asked him if he wanted a lick, and he stuck his tongue out. He licked the cheese, then opened his mouth wide open!! So we broke off a piece for him, stuck in in his mouth, and cheered him on. We practically did the circus for him, while telling him that he could do it! HE DID!

Ok so you probably think that I am nuts at this point, but we have been trying to get the child to lick anything for about four months now. We are over the top excited, for a one calorie bit of cheese..and yes we couldn't be more proud of him!

On another note, Lewis will be having surgery again on November 2nd to replace his gtube with a gj tube. This goes directly into his small intestine, and bypasses the stomach all together. We are still having aton of wretching episodes still, so much that he does it at night and it is affecting his sleep. We all are also in agreement that the wrap is too tight, so they are going to hopefully stretch that out a bit. This will be done at Mott Children's Hospital, and will be outpatient. At least we are crossing our fingers, that everything goes smoothly and we can avoid a hospital stay.

NICU Fashion Show Event

2009-10-20T20:18:00.001-04:00

Dear friends and family:

Please join us for an evening of Food, Fun, and Fashion, as we celebrate Lewis and other little heroes at the 5th Annual Fashion Show benefiting the Family Advisory Board and families of the Neonatal Intensive Care Unit at St. Joes!

This inspirational event will take place on Thursday, November 12th, at Washtenaw Community College in the Morris Lawrence Building, beginning at 5:45 pm. We are looking forward to a pasta buffet, delicious hors d'oeuvres, drinks, and dessert, as well as an amazing selection of silent auction items up for your bidding. Following the dinner and silent auction, you will be treated to a very touching fashion show, where you will be able to witness several of our grandest success stories...babies who were born much too early or sick, who have grown into beautiful children who light up the stage, and their families' lives!

This event is being hosted by the St. Joe's NICU Family Advisory Board (FAB), a group of volunteer parents who have had children in the NICU, and who are committed to making it a better place for all families in the future. The fashion show is the FAB's major fund raising event of the year, and the money that we raise on that night, from sponsorships, silent auction, ticket sales, Story Boards, and your generous donations, is used to fund several important programs, including our monthly Pizza Nights, Educate and Create, Parent-to-Parent training and support, holiday gifts for NICU families, and our popular Annual NICU Reunion. These programs and gifts support and touch the lives of families during what is often a very emotional and stressful time, and often have a lasting positive impact on NICU families.

We need your help to make our 5th Annual Fashion Show a huge success!!!

Tickets to the event are $25.00 and can be purchased in advance by emailing me at mandie7013@hotmail.com

We are on a mission to make this our most successful Fashion Show to date, so that we can continue to provide wonderfully supportive and informative programs for sick and premature babies and their families, and can continue to promote and implement exceptional family-centered care to those who spend time in the NICU at St. Joe's!!!

Please support us by attending this amazing event!

Yes the Bacon family will be showcased in the fashion show! We are so proud of him, and the accomplishments he has made. He has surpassed everyone's expectations, and is truly a miracle from above!

If you have any questions or are unable to make the event, but would like to place a donation please contact me!

Love,
Amanda, Jeremy, and Lewis Bacon

First Haircut

2009-10-18T19:00:00.000-04:00

Before shot

He loved the spray bottle of water, and of course checking himself out in the big mirror!

He did so great, no tears and sat still the entire time!

The stylist thought that he was the cutest kid she had ever seen, and loved playing with his bleach Blondie locks! She said we needed to get working on more babies, because we make beautiful ones! AWW such a sweet comment!

The after shot. He looks like such a little man now, I look at him and wonder what the heck happened to my one pound baby!? My precious little baby is growing up way too fast! :0(

Brrrr

2009-10-14T20:59:00.001-04:00

I do believe that it is getting cold outside!

My 16 pound baby

2009-10-13T20:01:00.000-04:00

BAM BAM! He just gets cuter and cuter by the day!

Future mathematician? Look at that fat roll on his legs, we have worked so hard for those..those fat rolls are sticking around!

Lewis finally pulled himself up on to his knees all by himself. We were so proud of him, and by the look on his face I bet you can tell he was pretty proud of himself as well. Our goal is to be walking by Thanksgiving, totally do able and we are working hard towards it!

This is how I found him one day after his afternoon nap, sort of looks like he is trying to get out of the jail cell. We took down the bumpers finally, because we found him pulling the bumpers down so that he could cuddle with them at night..and the fact that he thought they were good chewys as well!

Dennis the Menace look alike!?

Caught snoozing in the car.

Still working hard on wearing the backpack during the day, we are getting better at it and becoming more and more independent. However, we have learned that Lewis is all true boy! We found him picking his nose tonight, and then sticking his fingers in his mouth...GROSS!! We quickly tried stopping that habit, but Lewis is very independent and sassy! We are in trouble, because he is ALL boy!

Gap Casting Call

2009-10-07T08:50:00.001-04:00

This is definitely one of the best photos, you know that photo that you pull out when he is sixteen and his girlfriend just came over for the first time! Love it!

http://family.go.com/gapcastingcall/entries/mandie7013/907879707/
Please vote for Lewis at the Gap Casting Call!!
Come on you know he is cute! Vote! Vote! Vote!
THANKS

Dear Lewis,

2009-10-04T20:58:00.001-04:00

Child of wonder, close Your eyes
Rest here in my arms tonight
Someday You will save the world
But tonight I'll hold You, right here in my arms
Precious miracle of life, child of love
Gift of hope, the gift of light
From the Father above
And You were made for all mankind
But You will always be mine, child of love
Gabriel's promise has come true
God has blessed this world with You
And as I humbly hold You now
In my heart I know I'm holding heaven's child

Precious miracle of life, child of love
Gift of hope, the gift of light
From the Father above
And You were made for all mankind
But You will always be mine, child of love
Precious miracle of life, child of love
Gift of hope, the gift of light
From the Father above
And You were made for all mankind
But You will always be mine, child of love
Child of wonder, close Your eyes...

Officially and Finally

2009-09-30T19:42:00.000-04:00

We officially have a crawler! We have been practicing wearing our backpack while crawling to make moms life a bit easier! He also has been very drooly (if that is a word) so we are pretty sure he is FINALLY popping the teeth through. Please remember we have been going through the teething process for about 7 months now, and dear God we need those teeth. Also yes we are still aware of the urgent need for a haircut, we are getting to it..I promise.

It is also officially fall here, and we are loving the nice change and cooler weather. Lewis has perfect timing, and just as weather changed he finally moved into 6/9 month clothing. PERFECT! New wardrobe for the new season. I really love this jean jacket!

We also officially have a talker, and as we call him our little rock star. He says dada, yah yah yah, and itty (meaning kitty). He really is a rock star!

We also officially have a little ham bone on our hands. He had a ball when he finally discovered himself in the mirror, and really enjoying giving himself kisses. He had a ball all afternoon.

I guess we officially have a toddler now! We are having a great time watching him grow up, it has been such a joy to be his parents. We really are the lucky ones!