Days like yesterday make me really wish I had answers as to what is going on with our children and how to help them. It was a very rough day for Annalise.
May was a very busy month for Bryce and Annalise. It started with a quick weekend trip to Ryan House with Dad and their brothers while I stayed home and helped with the Finish Strong event, spent time with my mom, and taught my Sunday School class at church. The Finish Strong event this year was to benefit some good friends of ours, the Winter's family. It was a fantastic event and it was nice to be on the other side of it this time although I didn't really get to help as much as I would have liked to.
Then the appointments began. Outside of the ER trips and days of illness, the kids did have some scheduled appointments in which we learned a few new things. First on the 7th, Annalise had her feeding evaluation. That was basically a waste of time. The lady who did it was very nice, but you just can't truly see what is going on in just 10-15 minutes. That is not how our kids work. They can be fine one minute and struggling minutes or hours later. I wish I had gone with my original plan to just take her to the GI, because he knows our children's story and on her request, that is where we are heading now anyway. Thankfully, the therapist doing the evaluation did not hear anything that made her think Annalise is aspirating which is great news.
On the 8th Bryce and Annalise had their neurology appointment. I know I have said it before, but I will say it again, Dr. N is fantastic. Denise Hauer went will me to help with the kids and to get some paperwork from Dr. N. We got to the appointment about 15 minutes late. I apologized to Dr. N and he gave me a hug and said, "No problem, we have until 10:30." Almost 2 hours. He had scheduled that much time to be with our children so that he could watch them and really see as much as he could and have time to answer any questions that I had. It may seem strange that I am happy about a 2 hour appointment, but with Bryce and Annalise a lot can change in 2 hours. It's nice when a doctor is willing to take the time to see as much as he can before telling us everything is fine, sending us for tests, or prescribing some other medicine! Besides that, talking with Dr. N and my friend Denise for 2 hours is always nice...even if it is in an office. Dr. N has become like a family member who just happens to be an outstanding neurologist. A good man to have on your side!
While there, we discussed all that has been going on with Annalise. The rapid mood swings, loss of appetite, decline in speech and speech that goes from understandable to basically incoherent within minutes, sometimes within the same sentence, the decrease in strength, etc. Throughout our time with Dr. N, he was able to see all of what he referred to as the "complexities of Annalise's personality". We decided that it was time to have both of the kids get another MRI since it has been about 2 & 1/2 years since their last one. Annalise has only had one, so it will be interesting to see if there have been any changes and if so, what they are. At the same time, both kids will be getting an MRA since it is common for children with AGS5 to develop aneurysms and we need to check for any signs of that. He also agreed that it is time for Annalise to be seen by our gastroenterologist.
As for Bryce, he pulled something there that he has not done in a long time. First of all, when we first arrived and I was getting him out of the van, I noticed that he was really sweaty and clammy. This seemed a bit odd since the air was on in the van and it really wasn't even that warm of a day, but I didn't think too much of it at the time because Bryce just does that sometimes.
Once we got into the office, Dr. N noticed that Bryce's hypertonia has become worse. The Orthopedic doctor noticed the same thing just a couple of weeks before. He is increasing his baclofen with the hopes that it will not negatively effect his breathing like it has done in the past. He also said that we may want to consider having botox done in his legs to help.
Dr. N was impressed with the new things that Bryce is doing and seemed pleased that he is getting real food through his tube. He asked me if Bryce has had any seizures. I said no. He used to have what looked like silent seizures but he had an EEG a few years ago, when we were first noticing them, and it was normal. We have seen a few of these episodes in Annalise as well.
Anyway, so when it was time to go, Bryce was in his wheelchair and Dr. N came over to say good-bye to him. Bryce didn't respond. At first we all thought he was just ignoring him or in his own world or something, so Dr. N said good-bye again and touched Bryce's face. Still nothing. Denise and I looked at each other and then at Dr. N. What was that? Dr. N got down on Bryce's level and kept stroking his face and talking to him. Bryce just looked ahead. I'm sure it was just a few seconds, but it was definitely longer than any of the others we had noticed. Then Bryce just kind of came out of it, smacking his lips some and looking around. Then he suddenly broke into a sweat and Denise noticed that he was very clammy. We are not sure what that was but I am so glad he did it while Denise and Dr. N were there! So many time this type of thing happens when I am the only adult around and it is subtle enough to second guess myself and decide it is nothing, although this one was a little more than I had ever seen.
Dr. N said to keep a close eye on him and if he did it again to call and he would set up an EEG. So we said our good-byes and headed out. It took us a while to walk down the hall, but before we even got out of the building, it happened again. We didn't notice the staring off so much but all of a sudden he became sweaty and clammy. It happened one more time after that as well. I'm guessing that it had also happened just before we got out of the car that morning and that is why he was sweaty and clammy. As soon as I got home I called Dr. N. Bryce will be having an EEG done tomorrow morning.
On a happier note, Bryce graduated from Kindergarten and Annalise has moved up to the 4 yr old preschool! It's nice to have them around the house more, but I hope they don't get too bored this Summer.