Today Philip turns 1!
He loves to play with his brother and cousins, he pulls himself up and cruises along furniture.
He loves to bang things. And to nod Yes! He says mamamama, dadadada, and nananana. He doesn't really like baby food and is just starting to tolerate a little texture. He still loves his bottle! He is still very happy and has the best smile. He can light up a whole room with it. He has brought us so much joy and happiness and we can't imagine life without him.
It's bittersweet looking back one year today as we hurried to drop off Danny at Dan's parents house, my water breaking in the car, freaking out that I was going to have the baby on the side of the highway with no drugs. Getting to the hospital and telling everyone I had to push but was really only 4cm, The doctor delivering him and yelling he has to be 10lbs!, then the nurses weighing him and yelling that he was 10lbs 5oz! We were so happy, oblivious to the shit storm about to hit us just a few weeks later. Everything as we knew it would be turned upside down.
This year as a whole has been a rollercoaster ride full of too many ups and downs that nobody should have to endure, let alone a little baby. The hospital stays, the poking and prodding, the endless taking of medication, you name it…I know. I know. This doesn't sound like my usual upbeat always look on the bright side self but I'll be honest … I'm mentally, physically and emotionally exhausted. The recent passing of Nana has been pretty rough on everyone in the family. It makes me sad that she wont be here to celebrate Philip's First Birthday with us and that he didn't get a chance to get to know her like Mike, Ava and Danny did, but she will be here in spirit and I'll make sure to have an extra piece of cake(or two) in her honor. LOL
Now for and update on Philip's health!
The past few months Philip has become very itchy. He scratches his arms, legs, chest, back, ears, eyes and head. He is up every 2 hours at night scratching himself. The GI sent us to the dermatologist and allergist who both said it was eczema. She wanted to rule out pruritus from anything liver related because his bilirubin wasn't really high enough to suggest it would be liver related.
Pruritus. Pruritus is caused by bile buildup in the blood and irritation of nerve endings in the skin. Prescription medication may be recommended for pruritus, including resins that bind bile in the intestines and antihistamines that decrease the skin’s sensation of itching.
Source:http://digestive.niddk.nih.gov/ddISeases/pubs/atresia/
So we slathered him up in creams and ointments to no relief. So our GI did another blood test and his bile acids came back elevated. So we need to start him on another medication to see if it can help relieve some of the itching. We do however get to stop his antibiotics TODAY!!!! He has been on them since his surgery at 8 weeks old. They have stained his teeth grey and I can't wait to be done with that sticky mess! His spleen is also more enlarged and his platelet count is a little lower (meaning the spleen is holding onto more platelets making it larger). He also gives us a really hard time eating solid foods. He will tolerate some baby food. But when he's had enough thats enough. He has a tendency to gag and throw up a lot. He is getting a lot better but if he has something with a little texture its not a good situation. He is just starting to try to bite into food and he wants it but if he gets a piece off and tries to swallow, he gags and throws up. I feel so bad for him because he looks at you eating and tries to grab it but he just can't tolerate it going down. We have an appointment with Early Intervention to see if he can qualify for some kind of feeding therapy but they said most likely he won't because his development has not been affected by it. So with all that being said we have been referred to Mt. Sinai in the city to see the liver specialists. We visit them mid August and will report back with more updates.
Happy First Birthday Philip! So, How DO you measure a year? Just like the song, measure it in LOVE!
Philip, You are SO loved and we have been so blessed this past year to have seen it through all of the support of our family and friends.
May the world always meet you with as bright a smile as your own!
We love you!
No comments:
Post a Comment