Positive Trip to Cleveland

We had a great trip to Cleveland that started on Sunday with Ayden uttering "home" within minutes of arriving at the hotel. Ayden had  psych eval and EEG on Monday as a part of his routine follow-up for his 2 yr. post op visit. Then, we went back today to meet with a neuromuscular specialist, a new addition to the team. He suggested we start botox along with his current PT/OT. He offers it in Cleveland, but we are going to check locally first before we decide what to do. Our neurologist said the EEG showed expected seizure spikes, nothing remarkable that would cause concern, and added some much needed insight. He went back through all the findings/notes from our very first visit and reminded us that Ayden's seizure have never been exclusive to the right hemisphere. Although his myoclonic jerks (we saw in the summer of 2009 and truly disrupted his life) were stopped by the surgery, we could not expect a seizure free life for Ayden. This was disheartening because I do not like the medicines, but a bit of relief too. We now know that seeing a seizure does not mean the surgery failed or Ayden is very sick really helps me to relax a bit. Although seizures are still not easy to watch, breakthrough seizures may just be happening because of the basic reasons like growth spurts or illness. Dr. Lachwani feels that adding a psychiatrist and behavior therapist may help us to better serve his needs in regards to his aggressive episodes. We could use a bit less screaming and kicking in our lives. We will see where that goes and talk with Dr. Khan about it soon. Our last stop was the Neurosurgeon, Dr.Bill.  Ayden does have another screw loose as we suspected, but he said we do not need to remove it until it bothers us (or him) more. He is concerned about some of the speech issues and the lethargy we have noticed and offered to do a new CT, but we again decided to wait. Ayden has had so many CTs and MRIs we want to wait until we are truly concerned about a shunt issue. It was an informative and productive trip overall.
   It is so amazing to go back again, each time there are things I remember and it helps me realize how far we have come. Ayden is walking, "running" a giggly hip hop fast walk thing he does, and jumping with a little support. He is very excited about lefty lately and keeps putting things in it as much as he can. Ayden's newest therapist has been a blessing as we have watched his language increase so much over the past few months. He sings songs, says 2-3 word phrases often, engages in hellos(unprompted), and uses some scripted sentences too. We are so excited about all the progress he is making. Go Ayden Go! :)

A Much Needed Peaceful Summer

This summer Ayden has REALLY enjoyed swimming. He has a little swim vest and absolutely loves the freedom he has wearing it all over the pool. He will even climb the stairs and jump in all on his own, laughing after he goes under the water and pops up! His walking is coming along very well, when he feels like walking or we make him. I wish he had the desire to just do it on his own without being forced, but that will come too in time.
There have been just a few bumps in the road as the end of school brought the end of his favorite part of the day. So now we wait to get him back to school, he has pictures on the fridge and will stop and name each of his friends. We hope to send him back with no wheelchair as we still have a few weeks to improve his walking. We are also looking forward to new challenges and his goals will be set a little higher.

Medically speaking we are still dealing with some anger issues, but hope to resolve them soon. There are several factors we are trying to rule out. Ayden wants so badly to communicate more and we are trying to help him use his words versus the fits/hitting that has become routine. We are on two waiting lists for speech therapists and hope to get another therapist on Ayden's team soon. We had a sleep study done in June and will have his tonsils and adenoids removed on Wednesday to help him sleep better and hopefully improve his mood overall. We had some seizure activity about two weeks ago, but we are hoping a change in the medicine will do the trick. So far it seems to be so we are thankful for just a minor "bump" in the road.

Fortunately, we will be done with all this a few weeks before school in hopes of sending Ayden to school without any added discomforts/challenges. Overall, this has been an amazing summer with Ayden, doing things with him is getting easier as he will actually tolerate the grocery store, some restaurants, and the boat. All in moderate doses on "good" days, BUT we'll take it! :) When we stop and think about how far he has come over the past 3 years, it is truly amazing.

WALKING!!!

We used to say by his third birthday, then we said this summer...I have to admit I had started giving up on that goal again. Then, he started, not just once or twice but several times a day. He is walking a step or two on his own. I am so happy! I can't wait to see him continue to gain confidence. So grateful for the many therapists that have been working with Bub for soooo long(hoping you see this Nan).

Many Happenings in May...

Ayden was fortunate enough to be a part of this special video montage.

I plan to Streak for Stroke for the month of May. My streak will be striding for 30 minutes each day for all the challenges Ayden has overcome. 

http://www.streakforpediatricstroke.org/ 

We have also formed a virtual runners team and plan to meet with other hemispherectomy families for a walking 5k @ Ft. Ben in Indy on May 14th to raise funds/awareness for the Hemispherectomy Foundation.

http://hemifoundation.intuitwebsites.com/index.html

3 and LOVING it! Well at least he is...

Spring Break with Nessa, after covering the
 house with toys it was time to relax.

Ayden has been doing really well so I figured I would post more good news. He continues to work hard in school and therapy. With spring some headaches have returned, but he also gets to be outside more so that really helps. He has definitely been bucking the system a bit lately with 3 yr. old fits at school and at home. They are a blessing in disguise though as they prove how bull-headed, stubborn, and independent he is. All three qualities will continue to push him toward his goals. He is almost 40inches tall /48 lbs. so we would love to see him walking this summer and plan to spend a lot of time trying. We took our first official trike ride of the season. He actually fits this year without extra padding on the peddles. He was not a fan as I strapped him on, but once we headed out towards the road he really got excited. I think I wore out his little legs the first time, but he didn't want to get off when we stopped so that was great! His speech is most amazing as he is saying please and thank you without prompting and putting together small phrases with help. He will even surprise us once in a while with 3 words together on his own. Last night, the words of the night were "read and rock" so of course I had to listen.  We are incredibly blessed with so many wonderful people working with Ayden and we want to thank everyone who is following along.

Back Home Again

We completed the VEEG on Monday afternoon. Ayden slept through the night on Sunday and we didn't really see any of the staring episodes so they could not confirm everything. Unlike this fall, Ayden didn't have any "silent seizures" or activity that we could not see. We could have stayed on the EMU another night, but there were no guarantees that he would wake in the night or have a starring spell and Ayden was losing patience fast. Our neurologist was very happy with the results and suggested we try backing off the seizure medication in hopes of stopping the sleepiness and staring. He told us we could be "cautiously optimistic" about all of this.  We'll take it!  We met with his neurosurgeon after a CT this morning and everything looked great with his shunt as well. The only thing both doctors would like to see is Ayden walking. We would love that too! We discussed constraint/restrictive therapy and both of them recommended we discuss it with parents within the hemispherectomy community, but they would support it. So for now we hope to only post little victories as Ayden achieves more of his goals in the coming months. We don't have to return to Cleveland until his 2 year post-op appointments in October. Danessa was so curious about things this trip that we are thinking we may try to take her along then perhaps a celebratory trip to Kalahari on the way back will be in order!

We want to thank everyone for keeping us in your prayers this week. They have certainly been answered and we are so happy to be surrounded by so many thoughtful caring friends.

We're here!

I never thought this process would get easier, but it has. I think Ayden knew where we were going as soon as we left Angola. He was awake and irritable for most of the trip. Once we got past the process of the electrodes being placed though, HE SETTLED DOWN!!! Yes, Bubba actually let every doctor, nurse,and assistant do their thing with little to no fussing! It has been great! He also ate most of his supper and fed himself his desert as you can see in the video. We won't know much until Tuesday, but for now we are here and settled in for this ride.
On another note, we have to say that our world has been full of angels this week.
First, we had a generous card given to us with a kind note. I wish we could thank "we" but the card was unsigned so to whom it may be...Thank you! 
Second, you may have loved the "blizzard" or hated it, but it was a blessing for us as it allowed Justin to join us this week. I truly believe it comforts Bubba as much as me!
Third, we have been searching for Ayden's tray to his wheelchair for awhile now, even this morning Justin was searching everywhere. When we stopped at a rest stop on the toll road, I stopped and thought about the last place we used the tray (our December trip to Cleveland). We were on the opposite side, but the same exit so I asked one of the store employees about it. She called over to the other side and someone knew exactly what we were talking about and brought it right over. We were so glad that not only was it found, but  someone had taken care of it since then and made a special trip over so we could have it on our way to the clinic.

We just can't thank everyone enough for every note, thought, and prayer - Thank you!

2 weeks until Cleveland...

Looks like Bubba and I will be celebrating the Super Bowl on the EMU. We really haven't seen a lot of seizure activity lately just a few a day. What we don't see(during the night) and why they are happening at all is what we need to figure out. I am pretty sure I saw his first post-op drop seizure the other night at dinner which is concerning because he is up so much more than before so falls can be more dangerous than before.  The most puzzling things about all this is that the seizure activity doesn't seem to be delaying him at all! His therapists at Parkview have started introducing some electro therapy for his left arm to see if we can get any more function. Ayden continues to amaze us each day...counting to ten, repeating words, pushing up to kneeling in the middle of the floor, and just this weekend about 2 seconds of standing unsupported!!! I wish we could catch more of it on video, but he never cooperates with me once the camera appears.  :)

What Makes Our Bubba Special?

Ayden was born a healthy, happy baby boy in November of 2007. At the age of seven months, Ayden suffered a stroke due to herpectic encephalitis. It is amazing how something as small as a cold sore can turn your world upside down, but it did. After beating the odds in the summer of 2008 we thought we were through the worst of it and then he starting seizing a few months later.

In June of 2009 Ayden's sporadic seizure activity increased to hundreds of myoclonic jerks and drop seizures a day. In October of 2009, Ayden underwent a functional hemispherectomy which eliminated his seizures for several months. A shunt was placed in June of 2010 and since then we have seen incredible improvements. Ayden's seizures returned this past fall, but we are trying to manage them with medicine as they are only a handful a day coupled with some sleepless nights. We return to Cleveland Clinic's Monitoring Unit in early February for some answers and a plan.

When he turned 3 this November Ayden started a new and exciting chapter in his life - PRESCHOOL!!! :) He absolutely loves it, and watching him learn and grow is truly delightful for us. His vocabulary has increased from 15 words to 100+, he counts, uses his words (without a battle), and is really trying to walk!  We don't know what Ayden's future holds but we can't wait to find out. So many people have become  integral members of Ayden's "Village" that we want to update everyone. We will do our best to update as much as possible and hope to add some videos soon.  This will be a replacement for our Care Page so if you currently follow us there please note we will be ending that shortly.  

Hope to share more great news with you soon!