Summer is here!

I can’t believe summer is here already! It has started off very hot, so playtime outside is limited due to the high temperatures. By 10 am it is already 90 – 95 degrees. Aidyn had been increasing his fluid intake over the last few months.

Well, on April 14^th Aidyn turned three years old. He has come a long way in the last year. Shortly after his second birthday last year, he had his central line surgically removed by Dr. Puder a couple of hours before his CAIR appointment at Children’s Hospital Boston. I can’t tell you how happy we were to have that line removed. For the next 6 months or so, I kept hoping and praying Aidyn would not have to have one put back in. I am glad to say he is still line free. At the end of May Aidyn saw the GI. Aidyn weighed 12.2 kg, or 26.8 pounds, so he has gained four to five pounds since his line removal, but not without weight fluctuations. I worked very hard in finding the right balance of food and fluid intake to ensure he wouldn’t dump. In my mind, there was no point in allowing Aidyn to eat and drink absolutely any time he wanted if that meant he would lose possible nutrition in a dumping episode. Over time, Aidyn did tolerate feedings and fluids closer together. These days, I do allow him to eat and drink almost anytime he wants. He does haves a tendency to chug down all his fluids, so I control his drinking during meals, allowing ½ to 1 ounce increments between a few bites. It sort of forces him to sip. He still has popsicles that I make from the Ultima Replenisher electrolyte powder to help control his flow of fluid intake, too.

A trip to Sedona in January.

In the last few months Aidyn gained very little weight and it’s difficult to tell why. It could be because the Periactin he was taking was stopped and his appetite went down. Or, maybe he is burning more calories with the warmer weather. Or, it could be that I messed up his system when I didn’t give him his rotated antibiotics on time (a few days off), causing more liquid stools. The increase in drinking water? Maybe it is all of the above. Despite the lack of weight gain Aidyn has stayed healthy, maintained his weight and has grown in height. In January, he did catch a nasty cold after going to a preschool vision and hearing test. There were little children in and out all morning. He had fevers for a couple days and we managed it all at home without a doctor’s visit. He bounced back fairly well. His sister, Alyssa, and I ended up with the same thing, but we didn't recover as nicely as Aidyn did. 

Aidyn had been dealing with low Vitamin D levels for a year, and low B12 levels the past 6 months. The week of Thanksgiving Aidyn went from supplementing with 2000 units to 8000 units of Vitamin D2 a day. Levels were rechecked in January, but it went down to 17 from 21. The GI referred Aidyn to an Endocrinologist and it was suggested we try getting in at 10 – 15 minutes of sun three to four times a week. Labs at the beginning of April showed Aidyn’s Vitamin D went down to 14! It seemed obvious to the doctor Aidyn was just not absorbing the supplement. He suggested we increase to 16000 units a day. Labs at the end of May revealed Aidyn’s level went up to 28, still a little low, but much better. I believe the increase in Vitamin D supplementation along with weekly sun helped. We switched from D2 to D3 about a month ago. The insurance doesn’t cover the prescribed Vitamin D2 and it is very pricey. We will see what the over the counter D3 will do for Aidyn. 

Apples are Aidyn's favorite, but too much isn't good.

As for Vitamin B12, the Boston team started Aidyn on a series of three B12 injections (January, February and then March). Labs in April showed he was no longer low and the GI here in Phoenix decided to stop the treatment. Children’s Hospital Boston, on the other hand, felt it would be better to have Aidyn on a maintenance dose because of the portion of intestines Aidyn lost. It turned out a maintenance dose should have been in place as he is low again. The local GI wants to see what Boston thinks would be a good regimen once we go to the CAIR appointment the end of June.

 

I am happy to annouce that Aidyn will be attending preschool this fall! He aged out of the Early Intervention program and was evaluated for developmental preschool since he was premature and still has speech issues. He qualified for the preschool program based on speech alone. His articulation is still an issue and it was agreed that a school setting would be best for him. I can't wait to see the progress he will make once among his peers. He is such a bright child and always has a lot to say. It will be wonderful for him to speak where we all can completely understand him, or with out Mommy translating for him. I know it will make him feel better when he is better understood. Let's hope his immune system will be able to handle all the icky colds and such that he will be exposed to.

Oh, one last thing, my in-laws, Mike and Eileen Stephany sold their home over 200 miles away to be closer to us! We now have family close by and the kids will be able to see their grandparents a whole lot more. It really is nice having family just minutes away. In the couple of months they have been here, I have been able to catch up on three years of medical, dental and vet appointments that have been long over due. We are so grateful they can be of help to watch the kids, especially Aidyn.