Recent visits to Denver Childrens Hospital

Yes, it has been 10 months since I wrote a post, and what months they have been!! Overall life has continued to surprise us, in both good and hard ways. One of my 2013 life changes will be to cut down on Facebook time, and focus more on updating you all via this blog. I feel that spending time once a week writing a blog entry  will lead to less FB time, which I find takes me away from the more limited time I have with the kiddos and Jon.

I now work 32 hours a week and Jon has moved onto swing shift after his recent promotion to Sergeant. (Go Jon!!) Thankfully we both have the weekends off so we'll get to focus on family time then. The rest of the week Jon and I will be sleeping in the same place but not getting much awake time, and Brynn will get a few minutes of snuggle time with his dad in the mornings before school.

Before outlining our recent trips to Denver Childrens Hospital, I need to let you know that these people are INCREDIBLE. Every time we go up there they go out of their way to accommodate us and get us the appointments we need so we dont' have to return too many times.

Iann & I made our annual trip up to Denver in September, to see his developmental pediatrician. She is super pleased with his progress, really impressed with his use of sign language and continued cognitive advances. We also saw an audiologist who told us he didn't have hearing loss, so no more hearing aides. Good news but not impressed with the folks in GJ who have had him wearing them for 15 months!!!! Dr suggested we schedule a sleep study to see why he snores so loudly. Is it obstructive sleep apnea, which can be fixed by removing his tonsils or is it more serious, requiring a CPAP machine? (shudder at the prospect)

After scheduling the sleep study to coincide with picking my brother- in-law up at the airport, we went back up to Children's in November to learn how to desensitize him to all the stuff they put on for the actual study. I guess it worked b/c here is his a few nights before heading up for the real thing:

Iann all kitted up in preparation for sleep study

To add to all the excitement Iann started doing something funky with his eyes a week before our trip to Denver. They roll up in his head, he blinks, and they are back to normal. This happens over and over for up to 30 minutes. After seeing it twice in one day I mentioned it to Jon, who told me he'd seen it too, and asked if I thought it was seizures. I was very happy that he voiced it first because I didn't want to be the one to say it out loud. So being the mama bear that I am, I scheduled an EEG and neurology appointment for when we were already planning to be at the hospital. Iann did amazingly well with the 25 electrodes being put on his head ... of course watching Thomas the Tank Engine on his iPad probably helped:

Watching Thomas while the EEG tech hooks him up

Once the test started Iann tried his hardest to do what was asked of him:

Blowing on a pinwheel

He did find going to sleep a bit of a challenge, however after Jon and I basically laid on top of him he did give up the fight and sleep for a little while:

 

 

And he was super unhappy to be woken up 15 mins after going to sleep, but in the end we got what we needed :)

 

Crazy hair with the electrodes removed!



An hour or so after completing the EEG his neurologist confirmed my suspicions that the eye rolling activity is seizures. Oh, and this great news was delivered after telling us that only 10% of kids with Fragile X Syndrome have seizures. Why build up the hope only to dash it?? We will be switching pediatric neurologists in the near future ...

After the neuro appointment we headed to a friends house for a quick McDonald's dinner. Jon stayed overnight at their house while I got to stay in the hospital on the comfy parent couch, listening to Iann snore all night! Obviously all our hard work at home getting him used to the sleep study paid off, since he konked out right away and slept all night!

The results showed moderate obstructive sleep apnea, with his brain arousing his body to start breathing again up to 7 times an hour. In other words he is never reaching the deep level of sleep that allows our brains to restore and reorganize the events of the day. Our next step to a visit with the ENT in Junction to discuss removing his tonsils. This Dr removed Iann's adenoids a few years back and we were happy with his performance then, so we're are thinking we'll get the tonsils removed at St. Mary's and then if there are any bad after effects shoot up to Childrens at that point. However, after we see the ENT in a few weeks we'll know better what direction to go.

There is never a dull moment with this sweet boy. And he really is a sweet heart. He is trying hard to use his voice along with sign language, really beginning to master a few words. He is mostly happy, unless we won't let him play on his iPad when he's decided it's time, and we are so thankful that he hasn't shown any signs of aggression ... yet!