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Friday, May 14, 2010

another unsolved Charlie mystery

So, the pediatrician's office called yesterday afternoon with Charlie's allergy test results and surprisingly everything came back negative! While this is obviously good, exciting news, it does make you wonder what are the chances of breaking out in hives when milk was introduced without having an allergy. Hmmm... Just one more unsolved Charlie mystery!

So the plan now is to reintroduce all the dairy foods we were already giving him before he had the reaction (yogurt and cheese). Once he shows he can tolerate those still, then we will SLOWLY begin to introduce whole milk again and keep our fingers crossed. If he happens to react again, then we will probably have to bring him to an allergist to get a specialist's opinion on the matter.

We are going to remain status quo for the weekend and switch it up next week. I will keep you posted, but am hoping for no exciting news to share! :-)

Monday, May 10, 2010

Milestones and 15 months

I am a little late on updating, but on April 30th we "celebrated" our last one year NICU milestone - - One year since we were discharged and our family came home! It was probably one of the scariest days of the entire experience - and one of the most emotionally trying. It was and is hard to explain to people why we were not absolutely ecstatic that this day had come. Yes, we were obviously happy, but right along with that we were bombarded with feelings of fear and sadness that we were not completely prepared for.

Every new parent feels some sense of fear at taking their baby home for the first time, but what I felt was not that typical emotion. I still felt as if there were so many unanswered questions: Why had he vomited for so long even when nothing was being put in his stomach? What was the source of the old blood that he puked up for days? Why had he stopped breathing in front of me just over a month before being discharged? The doctors had run numerous tests, but found no answers to most of their questions and I was very uneasy with the lack of definitive conclusions. But I had to trust that the doctors were right in saying he was ready to move on at home. The only thing that put me at ease was that Dee was adamant that he was ready.

And, as I said, there was definitely a sense of sadness when we left the hospital that day. We had come to find the NICU home and the people there were our friends. Even though we had the best possible outcome in leaving the hospital with our baby, we were sad to leave our hospital home and friends behind. It was very strange to move from living and breathing for daily visits with our son to suddenly having him home.

But like everything, we adjusted and as the days and weeks passed, we could not imagine life any other way. To think that it has been a full year since we heard those beeping monitors and smelled the distinctive antiseptic NICU scent seems crazy! We think about those 85 days often and cannot begin to understand the full depth of the impact that time had on us.

Charlie is now 15 months old and is such a big boy! He literally learns something new every day. He has started copying words we say (gotta be careful now!). He says "bless you" after he sneezes and "thank you" when he hands something to you. He loves to read his books and will just sit and flip through them "reading" them out loud. Hos favorites are definitely the Five Little Ducklings, three of his Sandra Boyton books (Doggies, ABC, and Opposites), and Brown Bear, Brown Bear, What do you See? He loves anything with wheels and calls them all "car" as he pushes them along the floor or couch. And of course he still lives for the moments when the cats forget to stay out of reach.

We went last week to his 15 month physical and the pediatrician was pleased with what she saw. He has been having some puking issues - choking when he drinks that leads to puking, or just choking and puking some time after eating - but not every time. The doctor reevaluated his zantac dosage, but he has only gained a pound since February (up to 23lbs 4oz), so there was no major increase indicated. If it does not get better soon, then she said we will stop the zantac and try a new medication. It is a little strange because he has not had trouble with puking since he was 2 months old and in the NICU. Once they got it under control there, we never had another problem with it. It seems better the past few days, so we will have to see what happens!

Charlie also had to get two shots and had to go up to the lab for a blood draw. They are finally testing to see if he is indeed allergic to dairy. It was not fun for him or us, but they were pretty quick about it at least. I was hoping to have the results by now, but have not heard from them yet. I will pass along news when I get it!

Other than that we have been keeping busy and enjoying life!

We went and visited Nana-GG and Poppop a couple weeks ago
and happened across this sign when walking through downtown Saratoga!

Enjoying his Duckling book with cousin Kimmie

Eman was eating a banana with his lunch to I gave a chunk to
Charlie (fully expecting it to be immediately thrown on
the floor!), but he actually took a few bites!!! :-)

Getting two little boys to pose for a nice picture is next to impossible!

At least they look cute as they ignore me and the camera!

Monday, April 26, 2010

time flies when you're...

having fun??

I would not say that we have not been having fun - - we have actually been enjoying life quite a bit these past few weeks! However, Charlie may have his moments of disagreeing with saying its been fun. Three molars have been working their way into Charlie's mouth and its been less than fun for sure!

Our normally great sleeper has been waking up almost every night. He will usually put himself back to sleep, but its still disruptive to his rest and ours. His nose has been perpetually snotty and he HATES when we go any where near his nose to clean it. Our typically happy go lucky little man has had days of crankiness and just not acting like himself. This is so understandable when you see how sore his mouth looks! He handles it better than we would! And we have had to accept that eating is something Charlie will do in his own way and on his own terms. Luckily he is a very healthy size, so we are not overly concerned about his lack of eating having detrimental effects. We have come to the conclusion that force feeding is not worth the frustration it causes us, the tears it causes him, or the other possible long term effects that we may be instilling.

So, he has taken to eating mainly Kix or Cheerios other crunchy options. We did find a way to get at least a little bit of fruit into him by offering him freeze-dried fruit. Gerber makes freeze-dried diced apples and a banana-strawberry mix. We also went to the natural store hoping to find some cheaper options. There was not much of a price difference, but we did find some more variety. He loves the big dried strawberry slices, blueberries, and pineapple chunks. It adds some more options into his crunchy diet!

We have started offering him the sippy cup with water or sometimes diluted juice throughout the day with more regularity. He is slowly, but surely getting better at it. Though we cant help but wonder if the sippy cup aggravates his reflux somehow. He seems to have more trouble with drinking when it is from his sippy cup and has actually puked a few times while using it. We are just continuing to give him time and see what he can do.

Despite his teething and reflux flare ups he still manages to enjoy everyday and continues to impress us! He now imitates words we say to him and seems to understand more and more. After months of engaging him in it, he seems to finally get the hang of peek-a-boo. He will cover up his face and wait for you to say "Where's Charlie?" before uncovering his face with a huge smile. He says "tee tee boo", though not when he uncovers his face. He says "dog" and "duck" but they sound a lot alike. He will point to his belly and feet when you ask him where they are. He will also point to his hair, but prefers to point to yours. He will only point to other people's nose, not his own! He loves to stop whatever he is doing and break out in dance when he hears a tune he likes (such as the sweet and sour Twizzlers or Amazon Kindle commercials)! And whenever he hears applause he gets a huge smile on his face and claps his hands. This includes the applause at the end of each song on the Jack Johnson live CD or from the high school playing fields across the street from our house during lacrosse games. It amazes me that he is SUCH a happy baby! We are very blessed!

So, I guess time does fly when you're having fun. Charlie is such fun no matter if we are all sleep deprived and covered in snot and whatever food he has thrown at us in protest that day (and he does have a very good arm, for the record!)

Cheeks completely stuffed with Kix and very concerned
that we may try to sneak something else into him!


For awhile we could convince him to eat
something more if we let him feed himself!
Success = Mess


Charlie's first slam dunk on our newly installed basketball hoop


Daddy - Charlie bonding time


Our neighbors bought Charlie a water/sand
play table and he absolutely loves it!

Tuesday, April 6, 2010

sunshine and smiles

The weather has been unseasonably AMAZING for early spring in Syracuse! We have been out playing as often as possible and even made it to the zoo last week. Weather for Easter weekend was the best I can remember in a while and we had a fantastic holiday. We went to brunch with our nephew Emanuel and Vince's parents and then spent a couple hours at the playground. Charlie loved everything about it. He devoured a couple mini blueberry muffins at brunch, making a huge mess all over the table and floor and was so well behaved! He had a great time at the playground running all over and picking up the wood chips. He got to swing a little bit and loved the slide! He is a true daredevil little boy who was not satisfied with being put at the top of the slide before going down - he had to climb back up the slide after going down every time. In all, Charlie has just been as happy and cute as can be lately!!

"Wow... thats one big kitty..."

"Hey are you looking at me??? I am going to throw this thing!"

just super cute!!

The Easter Bunny must love Charlie!

All smiles at Easter brunch!
"More blueberry muffins please!"

swinging with Grandma

first time down the slide - not so sure about it!

"I love the breeze blowing in my hair!"

He looks like such a little boy now!
No more baby!

Wednesday, March 31, 2010

CDH Awareness Day

We are obviously all about raising awareness every day, but March 31st is a special day in the CDH community for bringing attention to a defect that most have never heard of until they know someone personally impacted. I am so excited about everyone who is wearing turquoise today and spreading the word about CDH! Please continue to share Charlie's story and educate people about CDH - it is the only way we can ever hope to get more answers!




March 31, 2009
Saw this pic hanging in a frame on our wall
last night, and I couldn't help but share it!

Friday, March 19, 2010

Springtime in Syracuse!

The past week of sunshine and warmth are the reason I could never live in another part of the country. Sure, our yard looks like crap right now and there are salt stains on our driveway, but surviving the winter months in central New York makes the springtime that much sweeter!

And Charlie has been loving the season change and being able to get out and enjoy the spring weather. He loves going up and down the driveway pushing his lion toy or throwing the ball over and over. He is still getting used to the concept of grass though! For most part he refuses to walk on it and will stand in the driveway pointing at his ball if it ends up in the yard.

The past few weeks have been much quieter in terms of visits to the doctor's office, so that has been nice! He goes next week for his last Synagis injection (another sure sign of spring!) Since cutting all dairy out of his diet he has been rash/hive free. They will do allergy testing at his 15 month physical to check for sure that dairy was the culprit.

We are still fighting the food battle with Charlie. He eats well enough when we can keep him distracted enough by toys and gadgets and Baby Einstein not to fight us. But if there are people around and he is distracted by them, we can forget about him eating! Finger foods and him feeding himself are still a challenge when it comes to anything other than carbohydrates! He loves Kix and Cheerios and crackers and bread, but fruits, veggies, eggs, pasta etc all end up on the floor immediately. We tried feeding him scrambled eggs by spoon, but that didn't go over well either. Honestly, we are not concerned - he gains weight fine and is obviously eating enough, but it is frustrating that we are having a hard time making this transition. We will get there though! We know full well that Charlie does everything in his own time.

Sippy cup usage is slowly progressing. We have figured out that he will take a plain old plastic sippy cup, so long as we take the valve out or use those cheap "disposable" ones. He does better if one of us is holding it for him because it keeps him focused on drinking and not playing with the cup. He doesn't drink much from it and unfortunately, he does often choke on it. He choked so bad one day last week that he puked his whole lunch up on his tray. I felt so bad for him! He really scared himself (and me)!

Reflux problems seem to be hanging in there. I mentioned before that Dr Ratner (surgeon) increased his Zantac dosage considerably at our check up last month. Typically by a year old, they start to wean medicines, but he is still having problems so he is not ready for that yet. Luckily the reflux does not tend to affect his eating as it used to, but you can still see it catch him sometimes. And when he is sleeping he will wake up choking/coughing from time to time and then get upset and need to be consoled. Hopefully as he continues to grow, he will have less problems with it! I know from experience that it is not a nice feeling to have!

Other than that, Charlie is just loving life! He is a happy, lovable little man and just brings us more smiles and joy every day!!

Cousin love!
Styling in their aprons sent from GG and Poppop

Dont let that sweet smile fool you! Throwing tantrums
has become his latest form of communication! I believe
one broke out shortly after this pic was taken!

Exhausted from cheering Daddy on at the Shamrock Run!

visiting with Aunt Sheri and Uncle Trevor

Our first outdoor play time!!!
Note all the snow still on the ground - it was almost 60 out!
That shows what a rough last few weeks of winter we had!

"Hi!"
Charlie stopped to say hello to his shadow! :-)

Loving the sun!

Kiss me! I'm Irish!
(Thanks Aunt Jen for the perfect St Patrick's Day shirt!!)

Wednesday, March 3, 2010

Celebrating!

We had Charlie's big birthday celebration on Sunday. It was a great time and we are so thankful for everyone who took the time to share this day with us. Charlie LOVED having everyone there and fully enjoyed the nonstop attention!

We had a Baby Einstein theme, though I don't think many
people knew what it was before Sunday! :-)


"Yay! More presents! More presents!"

We got him a big boy chair to sit in, but our neighbors, the Kilians,
win the prize for best present - Charlie loves his orange bouncy ball!

waiting impatiently for cake

"wow...."

"This is delicious guys! You should have some!"

He continued to look over at the cake and make the sign for more
throughout the rest of the afternoon until everything got picked up.