Saturday, April 16, 2011

Two Years Old!

Here we are, two years later. We celebrated Aidyn's second birthday with a small family party on Thursday. Aidyn has been a delightful addition to our family the last two years and we all adore him. He tried cake for the first time. I scraped off the frosting from the gluten-free cake and he wasn’t sure what to think. After a taste, he decided it was alright. He was in Heaven after opening gifts. Trucks and cars, what more can a boy want?

Aidyn has only a few clear words we understand, but a lot of his own style. He does say “no, go, thank you, all done, where’d it go, Dada, car.” I’m still waiting for “Mommy.” He is expressive and we cannot wait until those mashed up sounds turn into words we understand. Not just because we are waiting for that developmental milestone, but because he so smart. He contemplates and studies quite a bit, so hearing his thoughts on this and that will be a trip. Alyssa thinks he looks like Einstein with his crazy hair, but maybe he's has the same intellect, too.

I can honestly say this past year has been easier to swallow than the first. Although Aidyn had been hospitalized six times, two of which were surgeries, we have come into our "normal" family life. Next week we have another Boston trip planned. We are hoping and praying the central line will be removed. Aidyn did have a dip in weight from February to March, but he did deal with severe diarrhea and dehydration after a bout of antibiotics. He bounced back fairly shortly after a few days of IV hydration supplementation (at home) and has been TPN free for two months. Aidyn has a tentative OR date with Dr. Puder, pending his weight has increased. His weight was 10.285 kg Feb 22nd but 10.075 kg on March 31st. I really feel the line can be taken out despite the weight loss. I think he just needs a chance to show he can gain weight without TPN, maybe I’m too optimistic. He is a bit skinny, but so was Alyssa (and she still is). He seems healthy by way of looks and his activity levels. I am working on ways to add fats and protein. Without dairy, it’s a challenge.

We did vitamin labs Friday to see if there may be something missing, causing the lack of weight gain. The results most likely won't be in by the time we are in Boston's clinic next week. There haven’t been labs done since February when we went to Boston, so hopefully we haven’t missed anything. There haven’t been any blood in recent stool tests and we've been staying away from beef, dairy, gluten, bananas and peaches (well, most fruits). Aidyn still eats a bunch and drinks up to 750 mls of Elecare a day. In addition, he drinks another 260 – 300 mls of fluids from ORS and dairy milks. 

I am so glad we have Children’s Hospital Boston to follow Aidyn. He was supposed to have an appointment Monday with the local GI doctor, but I was called yesterday to reschedule. It would have been nice to have the call earlier in the week, because maybe we would have got in later this week. She hasn’t seen Aidyn since February. I am the one who scheduled a weight check in March since Dr. Ursea had no clinic appointment set up with Aidyn. I just think if you have a patient who has just come off TPN, there would be an interest in how progress is being made. Even if Aidyn has the line come out and we visit Boston less, much less, I think they will still be the ones we will take advice from.

I will update after next week’s Boston visit. Happy Easter!

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