Wednesday, June 19, 2013

Time for Change

I've been thinking about this for a while and I think it is time to make a slight change.  As many of you know, in addition to this blog for Bryce and Annalise, we have a blog for our entire family.  As many of you also know, I have not been doing a very good job of keeping both of these blogs updated like I would like to.  I also feel like the things that I post on this blog belong on our family blog as well since that is basically my journal of our family.  So, as part of my attempt to simplify my life, I am (at least for now) going back to just keeping one blog going.  It will be the one at   I will be continuing to update Bryce and Annalise's journey there as well as the rest of our family's adventures.  For any of you who would like to follow our family there, we would love to have you.

Another way to follow Bryce and Annalise on their journey (without having to read all about the Ho Hum activities of daily Clayton life), is to join the new group on facebook, Clayton's Quest.  I will be using this group page to share brief updates and news about Bryce and Annalise.  Just a warning though, the Clayton Quest group on facebook will include the good, the bad, the happy, and the sad of our journey.  I know some people don't like to hear about the hard/sad things that happen sometimes, but this is our reality and the reality of so many of our friends, so the posts in this group may not all be smiles and sunshine.  Although considering it is a page about Mr. smiles himself and his adorable sister, I'm sure there will be plenty of smiles and sunshine to share!

I plan to leave this blog open and maybe still write on it occasionally, but for now, I need to just have one blog for our entire family as my ongoing journal.  As always, we are so thankful for all of you, your support for Bryce, Annalise, and our entire family, your prayers, well wishes, and all of your heartfelt comments.  Thank you!  We are excited to "see" you soon!

Saturday, June 8, 2013

Bryce's Own Option

Ha ha!  Leave it to Bryce to find another option.  If you read my post from last night, you know I was hoping for another option.  Well, in typical Bryce fashion, he has found another one...kind of.

I received an email from Dr. N this evening.  (Yes, on a Saturday.  Any other doctor, that would surprise me...Dr. N...not so much!)  He had a chance to take a look at Bryce's EEG.  I nervously read the email which included this about what he saw:

1)      Mild diffuse background slowing – this is consistent with a diffuse process, such as a white matter disorder; nothing specific
2)      Frequent right central-temporal spike discharge – this means there is a focus that is firing intermittently on the right side; does not mean that he is having seizures, but is consistent with that diagnosis.
3)      The decision about treating him is a clinical one.

He then went on to say what his initial thoughts are as far as treatment goes which will most likely include trying some type of anti-seizure medication.  He will get the official EEG report on Monday and he wants to talk with us next week.

John and I were talking about this on our date tonight.  Frequent right central-temporal spike discharge...John said it is like Bryce's left side of his brain  is tazing his right side.  :)   No wonder he stares off, sweats, and startles so easily!  We have always known that he is a little thrill seeker.  Sometimes you just have to's often better than the alternative.

Anyway, so there you have it.  Bryce's mystery continues!  From the very first report that we got when Dr. N looked at Bryce's first MRIs back in 2009 and declared that they, "are abnormal, but not in the normal way." to today's report of he's not having seizures, but he is not NOT having seizure type activity either, Bryce remains consistent in one thing.  Choosing his own route.  He definitely keeps life interesting.

Friday, June 7, 2013

Another Option Please

We have not yet gotten the results of Bryce's EEG although I did get an email today from Dr. N asking me which hospital we went to for the test.  He said he will look up the record and let me know the results soon.  Since it is Friday night, I am guessing that will not be until Monday.  Although with Dr. N, you never know!

Anyway since Tuesday I have been thinking about what the results could be and what I am hoping for.  At first, of course I was hoping that he is not having seizures.  Honestly, seizures scare me and I really hope that is not what is happening.

But what is the alternative?  It is just my imagination and nothing is happening?  No, I'm afraid as much as I would like it to be just my over worried imagination, these episodes are real.  Something is happening.  If it is seizures, the doctor will start him on some medication to help them.  If it isn't seizures, what is it?

After hearing from a couple of friends about what their children have gone through and lots of thinking, I've come up with a couple of other possibilities.  It could be that he is having seizures, but they were not picked up on the 1 hour EEG.  So then the question is, if this one is normal, should we do a 24 hour one to be sure?

Then the other alternative which I really don't want to think about is that it may just be a sign of further progression of the disease.  More loss of the white matter, his body shutting down just a little bit more.  I don't like this alternative because there is nothing anyone can do for that.  However, when I think about it, this possibility seems all too likely.  It seems like if it were seizures, they would have been seen on the EEG a couple of years ago when he was having these episodes the first time.  Or at least they would have continued rather than showing up then and not again until almost 2 yrs later?

So really it seems to boil down to 2 options, either 1) it is seizures which means his disease is progressing, or 2) it isn't seizures but rather episodes of something more going on with the loss of white matter or in other words, signs that the disease is progressing.   I'll be honest with you...I don't like either one of these options and would really prefer another option please!  

Tuesday, June 4, 2013


When Bryce and I arrived at St. Joe's Hospital for Bryce's EEG this morning and went to check in at the admitting desk, we found that they had no order for him.  They asked me if I had brought one.  I told them no and that I was just told to have Bryce there by 9 this morning.  He said that he would have to do some calling around and see what had happened.  Well, it ends up that the EEG department called us to schedule an appointment but somehow forgot to send the order for it.  So...we ended up having to wait for about an hour for them to do whatever they do...write up the order, get prior approval from our insurance, etc.  For those of you who know Bryce, you know that he does not like to sit still for longer than about a half a second!  Since we had been sent to St. Joe's instead of PCH, there were no televisions with kids shows on to help entertain him either.  So I did the best I could to keep him from screaming out in boredom.  I really need to get this boy an iPad or something to take with us to appointments like this.

One of his favorite things is looking at pictures and videos of himself.  They crack him up.  So I decided to take some pictures of him.  The funny thing though is that he and his awesome little sneaky fun side threw a little curve ball into the fun.  As soon as he knew I was trying to take a picture of him, he turned away and starting laughing.  I would try to get him to look at me and he would just move into a different position, look anywhere but at me, and laugh like he was the funniest kid ever!  He doesn't have a lot of freedom of movement to do what he wants, so when he finds something he can have control of, he loves it.  He was cracking me up.  He seriously has one of the best personalities ever!

He started it off by giving me this look as if to say, "You want a picture huh?  Well, just try and make me to look at you and smile for the camera.  I dare you!"

Then he moved on to this...

Finally I think he got so tired from laughing that he finally stopped for a moment and actually looked over at me.  He is such a ham!  I just love this boy.

So after about an hour of taking pictures, walking around the hospital, holding Bryce while he twisted himself into all kinds of strange positions, and talking to multiple people who were having fun watching Bryce, they finally got everything in order and sent us upstairs to have the EEG done.  

Bryce wasn't so sure about having things stuck to his head, but he actually did really well, much better than I expected.  

The ones on the forehead were definitely the worst for him. 


 All wrapped up and ready for the test.

I was sitting next to him on the bed and they wanted me to keep his hands away from his head and keep his head in this position.  Again, for those of you who know Bryce, you know that he does NOT like to be still.  Explaining to him that he needed to keep his head in this position and keep his hands off of his head meant nothing to him.  Even though I'm sure he could understand what we needed him to do, he is just not able to lie still without having something to keep his smart, little mind busy.   We looked at pictures on my phone and then luckily I was able to find a video for him that helped keep him entertained.  It was also strange for me to have to keep his hands down, because until just a couple of months ago, he would not have even been able to move his hands up to touch his head.   He lost that ability within the first few months of his regression.  That is one of the things that he has regained since we started feeding him real food.  

So overall, the EEG went well.  Of course I don't know what the results of it are yet.  Hopefully I will hear from Dr. N with those results soon.  Then we will decide where we go from there.  

Monday, June 3, 2013

Busy Days

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.  

Last day of Kindergarten

First day of Kindergarten

May 2013

July 2012