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.|
|Very tired after a day of Sea World.|
|The beach was a definite hit.|
|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.
|Boston Children's Hospital grounds.|
|Children's Hospital Boston lobby.|
|Enjoying Thanksgiving dinner.|
|Staying hydrated with a popsicle made of Ultima Replenisher electrolyte drink.|
This wraps up 2011. I plan on updating about the start of 2012 soon! Here are more pictures to enjoy.
|...and after haircut, done by yours truly.|
Despite everything, he has a nice head of hair. It's been cut four times!