Wednesday, April 4, 2012

2011 Wrap Up

It's been six months since this blog has been updated, but there's more than six months of updates! I have decided to write about everything through the end of 2011 and continue with a separate blog entry that will start with the New Year. Here I go!

Since coming back from Boston, in June last summer, Aidyn has steadily been gaining weight. From June to December he gained two and a half pounds! That’s a little over half a pound a month! There were moments of ups and downs with weight, but overall, pretty good. Lab results from June’s CAIR appointment showed Aidyn’s vitamin D level to be low. He started supplementing with 2000 units/day of it in July. Since Aidyn reacted well to the use of Flagyl for bacterial overgrowth, he was cycled on it every other week instead of one week on 2 weeks off. I also continued to give probiotics.

It had not yet been a year since Aidyn had a speech evaluation, but I requested another one because of my growing concern with his lack of clear communication. So, he had one at the end of July. Three weeks later we got the results. He scored with a severe delay this time. The speech pathologist recommended speech therapy for a minimum of a year. Aidyn had no problem understanding us, or with his receptive communication, but he could not articulate sounds that he should have been able to make. Outside the norm he could make “g” and “d” sounds, but not the typical “b” and “m” sounds. My theory was since Aidyn was intubated early in life and also for six of his seven surgeries, his throat and tongue became overstimulated which made him mainly produce sounds from those areas. Trying to get him to make “ba ba ba” or “ma ma ma” sounds had always been difficult. When he said “bye” it come out “dye” and “Mama” would be “Nana.” He did his best to convey what he wanted to say by pointing or taking us to what he wanted. He frequently became frustrated at us for not understanding his jibberish. In August he started speech therapy once a week. The therapist has been doing all she can to help with lots of different games and oh, the always fun iPad. To help stimulate better sensations with his lips we blow bubbles, use straws for drinking and I even bought an electric toothbrush. There has been some progress since we started speech therapy as he will now mimic the “ba” and “ma” sounds when asked, but he still is trying to incorporate them with words. I am happy to say he is saying "mama" more and more now. One thing Aidyn has going for him is his mastery of tones and syllables in words. Given the context of the situation, you can figure out what he’s saying at least 50% of the time. He is talking in complete sentences and I finally realized he has been doing so for months now. He loves mimicking vehicle sounds and is good at it, for example he makes sounds that are distinguishable between a morotcycle versus a car.

First time in the play pool last summer.
His first trip to nearby Sedona. Well, second if you count being in utero.
In mid August we took our first, but short, real vacation since having Aidyn! We headed to California’s Sea World. We spent one full day at Sea World and the next day we played in the sand and water at a nearby beach where we stayed. It was a very fun and relaxing trip, especially because we didn't have to worry about a central line anymore.

Very tired after a day of Sea World.

The beach was a definite hit.
In September, the local Gastroenterologist ordered stool studies and suggested we have him scoped to evaluate for possible Eosinophilic Gastroenteritis if his weight was lower at next month’s visit. He weighed 23 lbs 5.6 oz, but was 24lbs 4 oz the week before. His frequency in stools increased and they were more loose than usual. I thought it could have been the combination of giving him coconut milk and the round of Flagyl he started. I did further reading on the milk and there’s a possible laxative effect with it. With my urging I stopped his Creon medication. It seemed to give him major discomfort to the point of being extremely irritable. 

Bad tummy day at the park.
At the end of October, Aidyn’s weight was 24 lbs 3.7 oz.  the doctor was very pleased with his overall weight gain since she saw him in September, especially after stopping the Creon. It’s possible that at the time Aidyn started having discomfort he was making the needed enzymes to break down fat, and the combination of his enzymes and Creon were causing a negative side effect. There were no recommended changes to his medications or diet, and the doctor felt he did not need to continue with support from Creon as the stool studies were negative for blood and inflammation.

We headed to Boston Nov 3rd. It was a good visit to the CAIR clinic. However, Aidyn wasn't in great spirits since we had a long plane ride the day before, and got up early to do labs before our appointment. Members of the Omegaven team eagerly popped in to take a quick look at Aidyn and they were very impressed. He looked visibly healthier in terms of growth and had a nice increase in his weight since the last CAIR visit in June. Dr. Puder wasn’t in clinic that day, but the fellow surgeon paged him from another part of the hospital since I really wanted for him to see Aidyn. It was a kind gesture and Dr. Puder was happy to come. Aidyn was still cranky but it didn’t stop Dr. Puder and I from having a good talk. We flew back to Arizona a few hours after clinic. Labs from clinic showed Aidyn’s vitamin D still low and B12 a little low. B12 was 153pg/mL (normal 190-778) and Vitamin D 18.6ng/mL (normal 30 – 80). The week of Thanksgiving I started giving Aidyn the full vitamin D dose of 8000 units a day. Labs would be rechecked again in January for both vitamins. 
Boston Children's Hospital grounds.
Children's Hospital Boston lobby.
Enjoying Thanksgiving dinner.
Staying hydrated with a popsicle made of Ultima Replenisher electrolyte drink.
In December, I started noticing that Aidyn wasn’t having any bowel movement for many hours after waking up. I suspected he was controlling his bowels, especially when not at home.  Consequently, he started having bowel movements after bedtime. At his December appointment, his GI said he was probably withholding, causing residual stool to come after his body was relaxed. His weight did not change much. We decided to temporaily put Aidyn on Periactin, a drug usually used for allergies. Its side effect is increased appetite. The doctor put him on a low dose and we hoped it would help him gain more weight. In two weeks Aidyn gained a pound, putting him at 25 lbs. 7 oz! What a difference! We decided to keep using the Periactin for a little while longer.I started him on a new probiotic and it seemed to work better than the Culturelle.  The night time bowel movements stopped and he was on his way to being potty trained.  

This wraps up 2011. I plan on updating about the start of 2012 soon! Here are more pictures to enjoy.
Before ....
...and after haircut, done by yours truly.
Despite everything, he has a nice head of hair. It's been cut four times!


  1. I know all too well that is a long and strenuous journey...but thank you for sharing your story. Maybe if enough stories like this go around we can all fight the FDA together and stop letting babies dies because they can not get the help.

    1. I love sharing Aidyn's story! I'm right with you, Joanne, I hope these stories make a difference so no more babies have to die and families can have hope. :)


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