July 2, 2014 by kruckr
I can’t believe my boy is already a year old. This past year, no …. year and 9 months, have gone by so fast. Thus is the passage of time from now on I’m afraid. I’ve already given a pretty detailed account of everything that’s gone on with Mr. Henry for the past 11 months, so I’ll just review this past month.
Since June 1st, we’ve only had one more hospitalization. On June 16th, he started having apneic seizures again, after going for nearly 3 weeks without any. These unfortunately were longer than any that he’d had before. The last one he had, around 8 p.m., lasted 3-4 minutes. By the time rescue arrived he was in a sedated state (no medicine required – after prolonged seizures, and not breathing for a few minutes, the brain’s gotta rest) but breathing. We went to Wolfson’s by ambulance anyways, just to be safe. It was a long night in the ER and they checked us into the neurology floor at around 2 a.m. He didn’t have any more after that. The next day was exhausting and slow at the same time. At around 3:30 p.m. I started asking to go home since not a lot had happened that day. I don’t really see the point in keeping him there, with monitors and IVs, unless absolutely medically necessary. Since that time, we’ve had a few medicine adjustments and only one 30 second seizure. He still sleeps with the apnea monitor every night and that gives mommy and daddy a lot of peace of mind.
On to happy news … he’s started rolling a lot more on his own without any coaxing. Several times it looked like he was going to go all the way over, but I don’t think he’s ready just yet. He’s eating well consistently and smiling and babbling as well. We’re working with him on cereal again. He’s got to work on his organization with pushing the food to the back of his mouth, but at least he’s not screaming when I put the spoon in his mouth … most of the time.
His 1st Birthday party went really well. He kept his normal eat/sleep schedule, but I did get him awake for the Birthday song and cake. Everyone else seemed to enjoy themselves (or were at least polite enough to tell me so:) Thanks to Pinterest and my friends and family for making this work.
Unfortunately, we spent his actual birthday at a few routine doctor’s visits. The first was his 12-month well baby with Dr. Komatz. Nothing major to report there. We’ll begin transitioning him to the toddler step up formula soon. Also, we’re going to get his airway checked by the ENT again because his breathing is a little wheezy. The second appointment was with his geneticist Dr. Persyck. If you ever have to see Dr. Persyck you’re always reminded to pack a snack and bring a book. His appointments never run on time, but this time I got to see why first hand. There is nothing routine about his approach. He wasn’t the least bit rushed. He wanted to go over every concern I had. But, I think what I appreciate most about him is that while other doctors allow that Henry isn’t making normal progress because of his condition, Dr. Persyck doesn’t seem to accept that quite so easily. Sure, he isn’t surprised that he may not be sitting yet, but he was more focused on what we can do about overcoming his delays. Now, let me provide a disclaimer: his normal pediatrician is wonderful and I love her. It may just be a difference in the female/motherly nature vs. the male/fatherly nature thing.
Moving on, Dr. Persyck thinks his oral aversion may be caused by reflux. Even though he rarely spits up, I have noticed a lot of coughing or gagging sound after eating. He also wasn’t too happy by how much of the day he is sleeping. We increased his Topomax after the last hospitalization and I’d say that on average, Henry can make it about 2 hours before he needs a nap. We have a 72-hour EEG scheduled this weekend. When we do our post-EEG with the neurologist, I think I may bring up these concerns and discuss lowering the dose or switching medicines all together. I kind of got the feeling that Dr. Persyck may not be a huge fan of the Nemours neurology team. There is another neurologist that sees the medically complex patients on Thursdays. We may also look to her for a second opinion in the future.
After the doctors, I took Henry to his very first hair appointment. I got my hair cut at Divine Salon in Oakleaf last Friday and was asking if any of the stylists did baby’s cuts. One girl volunteered, so I booked her. I didn’t really have time to go over Henry’s history with her, so she didn’t know anything before we sat in the chair. I have to say though, that she either didn’t notice his differences, or didn’t care. After gushing over how cute he is, she just jumped right in … and she did an awesome job! He was a lot more cooperative than I thought he’d be, but she really made it work. I never mind answering people’s questions about Henry, but it is nice sometimes when he gets treated like any other baby. A big thanks to you Kayla! He looks awesome!
Today/tomorrow, Henry will have his 12-month photo shoot. I’m super excited. Wish us luck for a happy baby and big smiles.