Merry Christmas!

Yes...The Answer is Yes!

We asked the question, "Was the surgery a success?" a few weeks ago. At that point, we had to say time will tell.  I am only his mom so I know I have bias, but I also expect the most and my answer... YES!! Although Ayden is not back to baseline in his gross motor, he is working towards gaining strength and working hard for his PT. The use of lefty and desire to use lefty is greater than it ever has been. My son is the happy go lucky kiddo he truly is and was after his first surgery, before the hydrocephalus. Although lonely because it is summer break, he is very HAPPY!!! There is no really value for this medically speaking, but we are thrilled. His speech is still slow at times and he is struggling with some pronunciations, but in that same breath, he is singing every song on every toy he owns! His love for music is apparent and we really want to try and get some music therapy set up again. His speech coincides with the music so it only makes sense. Parkview has agreed to take him back on their schedule for ST (as our speech therapist is expecting a child soon). This could mean a full day of therapy on Mondays, but grandma will do that again for us when the school year starts up. We truly feel this redo was the answer to our prayers! Even the complication of the shunt malfunction was a blessing in disguise. If he had not had the hydrocephalus again, they would not have noticed the closing of the ventricle to the left side and fixed it. Now we know both sides are draining properly and unfortunately, we also know how fast and what a shunt failure looks like for Ayden. We also know Ayden's CTs are not going to be easy to read for Hydrocephalus and want to talk to the neurosurgeon more about this next week at the follow up.
We have had a crazy week of odd occurrences, but with a log of the activity and some research into labs during his stay at CC we found that Ayden was actually very high(well beyond therapeutic range) for one of his AEDs. We have now reduced it to his previous dose he was on prior to surgery just a few months ago. This allow the medicine to work, but not cause side effects we saw at specific times after his meds were taken  - loss of gross motor, nausea/vomiting, fatigue, blurred vision. We started the new dose on Sunday night and Monday morning, he had OT/PT, 2+ hours in the car, short times outside in the heat, and yet was fine ALL DAY!! Unfortunately, our pediatrician didn't buy the idea that his AED was causing these problems and directed us to CC. It is a holiday week and we had a healthy kid all day yesterday so we just didn't see why we needed to go. We called back and let them know we would not be going and we hope our pediatrician will forgive us for being bullheaded parents this time. We also hope that we have enough evidence to share with our neurologist in Cleveland next Tuesday to prove our point and why we changed the dose. When we get back next week we hope to stay FAR AWAY from Cleveland until November for his 6 month appointments. So far we are SEIZURE FREE!!! :)

Answered Prayers - not medical miracles... Our Bubba is here because God has a greater purpose for him and he has things to teach others. We watched some brilliant minds puzzle over our child in these past few weeks and only with the Lord's guidance the answers were found. Thank you all for the prayers, if we played the odds game Ayden would have gone to be with God more than once. We cannot thank everyone for all the thoughts and prayers sent our way for months and for that matter for the past four years. Thank you!

Seizure Free and Happy! :)

We have been home since late Wednesday night and Ayden is adjusting really well. He is back to the bottomless pit he was before; consuming mac n cheese, noodles, and anything he can dip in ketchup like crazy. He wants to feel better than he does, and that can be frustrating and motivating at the same time. He tolerates some time outside, but tires pretty quickly still. We have been excited about his progress as he is taking a few independent steps, but keeping a close eye on near by furniture he can grab if needed. His eyes improve each day and especially look better right after he wakes up from bedtime or nap. We are not too worried about any of it yet.It seems to be more about rebuilding strength from sitting in a bed for almost a month, versus loss of actual function. He will again have OT/PT with his regular therapists on Monday for the first time since his shunt revision and we are anxious to see what they think. They were impressed two weeks ago after his redo, but this time he will be doing less. We left Cleveland with a script for OT/PT 5x/wk for 4 weeks, but no one has that kind of availability around here(yes, one of those times I wish I was back in Indy). Ayden will just continue to go once a week and we can try to pick up open slots at Parkview when they have them available. Fortunately, he is motivated enough to do some of his own therapy like climbing halfway up the stairs on his own today (yes, I was close by just in case). We have not seen any seizures in days, not even any "odd" actions or looks since we left CC. Everything seems to be really well and we truly cannot thank everyone for all the cards, thoughts, and most importantly - the prayers!

"Ready go home" -Ayden

We have been very excited to see more and more of Bubba lately. He had a few times yesterday that he woke up and talked some. His speech is slow at times and fine at others. He is definitely more aware of what is going on, whining and fussing when people come in and when we do the meds. This morning he ate some breakfast, which was more than he has had in awhile, and he has kept it down. His eyes are not focused, but opening so we are hopeful. We have orders for a move out of ICU today, but if we are going to the EMU then we could be waiting for awhile. Our neurologist just came in, they left the leads on him overnight and saw short spikes in his good hemisphere. Really, this is not anything new and we are ok with it. We know his left hemisphere has damage and has potential for seizures that is why he remains on AEDs. Therapy wasn't very successful yesterday, but he was just too tired so hopefully we will see some more work today as he perks up. No talk of discharge yet, but everything points to taking our time to make sure he is good before we go. Thank you to everyone for the prayers we really feel like we are on the upswing now and as Ayden said yesterday "Ready go home!" Our reply to him was simply, you have a lot to do before then so let's get busy!

Surprises

Well after the positive post on Tuesday night Ayden woke up Wednesday morning very irritated and not feeling well. We went to our pediatrician for a follow-up we already had scheduled. Given the events over the weekend and the obvious irritability he displayed in the office the doctor admitted him. He spent most of the first night getting sick and being miserable and most of the next day sleeping and being quiet. On Friday morning Ayden was rigid and status this was just like we found him the morning of June 13, 2008(the day of his stroke). After an LP and Ativan a CT was ordered as Ayden slowly started to shut down. The CT showed hydrocephalus and Ayden was flown by Samaritan to Cleveland Clinic. According to the neurosurgery team Ayden was not good when he arrived and they put a cath in his right side to start draining the fluid. By the time we arrived (3 hours later) he was talking and awake, something he had barely done for 2 days. Yesterday, he woke up tired and grouchy, but he was still talking and moving. Within a few hours, he started to decline again and was about where he was when he was flown to CC. We had doctors in Ayden's room a lot and a few even traveled with him from the floor to CT and back. The day was very similar to June 16th, 2008 when doctors and nurse came in and out and we just sat waiting to hear something. That day we were told to call all our family, and yesterday emotionally paralleled that day. Fortunately, by the afternoon neurosurgery pinpointed the problem took him to the OR. They have replaced a valve in the shunt and also enlarged the connection between the hemispheres to help drain fluid from the left hemisphere as well. There was a kink in the line from the shunt after the OR, but the resident was able to correct that externally so now there is just a slight curve and should not be a problem. This morning he has yet to really perk up and has started a low grade fever(for Ayden 100.2 is a fever), but he has taken his meds by mouth and eaten a few bites of applesauce. We really hope the ng tube is pulled within the next few hours or this day could go wrong quickly as he has already shown his displeasure and pulled it out by a few inches so far. The plan as far as we know it now is to stay in ICU another day, watch the fever, and tomorrow we will talk about moving to the EMU or peds floor as well as ending some of his antibiotics if everything keeps coming back negative. We have had a few rough days, but we feel good about where we are at now. Ayden's eyes are the most damaged at this point as they have felt the pressure the most. We are hopeful as we have seen the right eye open a bit and the nurse says it is showing a slight response in the neuro checks. It is a wait and see day, not much happens on Sunday around here anyways. We would like to be home by midweek, but we do not plan on rushing out of here and this time, everyone seems to agree. We will just keep working towards getting him better. Thank you to everyone who has helped out in so many ways. Nessa is having a harder time with all this as she started asking questions the other day, questions unfortunately I cannot answer. "When will Ayden be able to stay home".

Bubba is Back!

It is hard for anyone who has most recently met my son to know just how honestly sweet and easy going he is. Since birth Ayden has been a very happy baby as long as he gets breaks from crowds, keeps a schedule, and receives sensory input when he needs it. Think giant 4 yr old who just wants to be rocked and held like a 6 month old! :) That's my Bubba!
 Unfortunately, over the past 4 years (yes, it has been 4 yrs tomorrow since his stroke.) he has had to battle the side effects of seizures, seizure medications, and hydrocephalus. Ayden has had some great moments when he really felt good and was happy;Those are the times when we have watched people fall in love with his wit and charm. When considering this surgery the loss of the Bubba we know was a major factor along with the seizures. We refused to watch our son turn into this agitated, overtired, monster of a boy frustrated at the world around him(understandable so).
Yesterday, we gained one of our biggest compliments from a therapist that has worked with Ayden for years. She said (as he was crying in the background) even though he was fussing it was just typical resistance not anger like we have seen recently. He was simply fussing to see if they would go easy on him, fortunately they didn't, and that is why we love them! :)
Do we know if the surgery was a success? We have a happier kiddo, a more alert kiddo, a chatty kiddo(even to Captn' Crunch on the box during breakfast). Time will tell if he is truly a seizure free kiddo, but for now we have seen very few seizures since the first week post-op. We had a bit of a scare early Sunday morning with a cluster of seizure activity I have only seen once before (in the hospital about 5 days earlier). After 40 minutes we decided to take him to the ER. A CT and chest x-ray were done, Ativan was given and no explanation was really found for the cluster. So what happened? We think the HSV activated while we were at Cleveland and our infectious disease doctor agreed that is why he was sent home with his PICC line and Acyclovir last week. In the past, even with treatment, the HSV has caused Ayden to have atypical seizures so the theory is based on what we know from before. Tomorrow, we meet with our pediatrician who has taken over Ayden's case since our discharge and he will decide whether we continue for the full 21 day dose or discontinue it.  It is scary to think that the virus is STILL capable of doing harm to Ayden, but it is somewhat of a relief to think the seizure activity post-op could be contributed to the HSV versus the idea of the surgery being a failure. That is the silver lining to this cloud.

Now we wait and see, how far will Ayden go with this new crisp, clear mind. We continue to pray for seizure freedom,  an end to this possible HSV flare up, and for Bubba to to find the strength to keep pushing past the barriers that frustrate him so much. Yes, potty training included - we'll need lots of prayers for that! LOL! :) I apologize for such a delay in posts, but since we have been home I have found free time to be a thing of the past. Thank you to all of you have continued to share your thoughts and prayers on Facebook as we have hit the ups and downs. Hopefully, we are now out of the woods and ready to move forward.

What a week!

The past few days have been rough, but today we heard a word we always love to hear..."discharge". We could possibly be on the road tomorrow assuming we have a good night. There are strings attached though, literally. We will meet with home healthcare when we get back to handle his PIC line for at least another week. There was much discussion about the need for inpatient therapy or at least intensive outpatient. Unfortunately, with Ayden being sick the assessments were based on two interactions, once the first day post op and then on Monday for about 30 minutes. My gutt and our hemi friends that have been there say when Ayden is feeling better he will return to baseline. I have won that battle and made sure everyone understands how I felt about our last rehab stay, the therapy was phenomenal, but inpatient side was not good. I have filled next week with appointments between extra therapy sessions with Parkview, a follow up with our local pediatrician, and the orthotist. We are hoping for a peaceful trip home without any sickness. Ayden is still not himself, despite really trying to perk up today. Our infectious disease team cannot rule out an HSV flare up without a spinal tap, but given that it would not change the treatment plan much our neurosurgeon wanted to avoid it. I am very glad as it would be another procedure and Ayden has been through enough right now. He will continue with the Acyclovir and we will have easy access for bloodwork and fluid if needed. Surgery Success? Well, Ayden has not seized so far today so we still have hope as we take the wait and see approach. We want to thank everyone who has helped with sis or errands, but most importantly thank you for prayers! Hope to write from home tomorrow!

Ups and Downs...

Ayden has been sick off and on for days and had trouble keeping much of anything down. He blew through all his IVs on Sunday and proceeded to be a human pin cushion for about 4 hours. We had both nurses on the unit make attempts,PICU nurse, transport team, and finally head of anethesia;who tried and then decided to use the empty OR to get some lines in. We had two, lost both today and are now waiting for a PIC line. They can still send us home with that so we can administer the Acyclovir(antiviral for HSV). Infectious disease is not ready to say we are ok and wants to error on the side of caution. He continues to have clusters, not as many or as hard, but it is very frustrating. We have lots of support from our Hemi community and many say don't lose hope yet. His brain is still healing and his body is very stressed. The neurologist saw his seizures during rounds the other day and they have already increased both meds. The key is to get the seizures stopped to avoid any further damage while the brain heals. On the bright side we saw Bubba (real crooked grins and all) yesterday for a few hours. Ayden took a really good nap @ 11 am and then PT/OT came after he ate some lunch(yes, ate and kept some bites down!). They were going to leave him in bed at first because he was so whiny, but I pushed for them to take him and they strolled him down to the toy room. He became a new kid in a matter of a half hour, he was playing, sitting up, and they even got some walking in. He then came back and ate and played blocks some more. He slept from 4 pm on, but did wake up to eat a bit and had a pretty good night. He got sick @ med time and then again this morning after his Tylenol so we will just wait and see how the day goes. Funny fact: We are on the Epilepsy Unit so they have cameras on the kids and they have to keep readjusting looking for him, but he has been under his favorite body pillow the whole time! :) Prayers for a happy Bubba soon!

The update, sorry this is so late!

We met with Dr.Bingaman on Tuesday and he gave us a 50% chance of seizure elimination this time around. In his words he was pessimistic, but understood how this would help eliminate worry about the left over tissue and the possibility of future problems. The surgery on Wednesday went well, and he sounded more optimistic given the tissue that was removed. Ayden had a rough night Wednesday, but started to really perk up yesterday. There was only one problem yesterday, and that was the return of seizures. He has had five clusters so far, fortunately his cluster today was while the Neurologist was in the room. He felt it definitely looked like seizure activity, but reminded us that the brain is still swollen and healing. We are still trying to be optimistic as we move forward. Today has been a very grumpy day for Bub, but on the bright side his drains from his head have been removed and we will be moving to the EMU soon. There was also one big highlight, holding Bubba today was very good for both of us. With his exterior drains removed I was able to hold him and lay next to him in bed. He has been sleeping pretty peacefully since all the commotion of the morning. He has eaten, one bite of waffle and some milk,but it was on his terms without forcing so we'll take it. Another highlight is Infectious Disease has been on board and following in the background, but with no signs of fever or aggitation the HSV no longer has us worried about a flare up. Ayden is back at baseline already and for lack of a better term, sharper than before. We don't see the fog in his eyes and the clusters we have seen have not been as severe as what we have been seeing. Everything has gone very well so far and with us moving out of ICU returning home by next week does not seem unreasonable. A big part of me would love to pick Nessa up from school on Tuesday, but we will see, that may too hopeful! ;)

Over a Dozen Reasons to be Thankful

Saturday was absolutely amazing! Our Team Ayden's Avengers raised over $500 for the Hemispherectomy Foundation. The Hemifly was a beautiful sight to see throughout Ryan Park on Friday and then Saturday morning we were joined by friends to do our walk on a beautiful morning. We are so glad to support the foundation that connects Hemi families across the globe, provides information, promotes awareness, and funds research. Without the Hemispherectomy website when you Google "Hemispherectomy" as a scared, nervous parent you would simply find articles entailing all the things that could go wrong and the risks could just make you feel more worried and alone than before. When parents are looking at this option now they find a website with information, contacts, and most importantly stories of hope.

We also had several virtual members that are not pictured we want to thank: Pat Gunnell, Jana Hoffman, and Teri Canfield. We are looking forward to next year!
 In just two weeks, we will be packing for another trip to Cleveland, another sleepless night, another tough morning and long worrisome day. However, one thing we know, and that was reinforced on Friday and Saturday is we will not be alone. THANK YOU!

Another Hemi, but with it More Hope

Ayden's second hemispherectomy will be on May 30th. His first hemi almost three years ago was functional, only taking the tissue necessary on the right side(temporal lobe) and disconnecting the right hemisphere. This surgery will be an anatomical hemispherectomy - taking out the remaining tissue that could be causing the seizure activity. The recovery time will be longer than before, but he should not lose function so he will not require the stay at the rehab hospital or intense therapy when we come home. We hope he can return home within two weeks ready to continue his current therapies and enjoy his summer. Ayden's epilepsy will not be "cured" by this surgery, because we know he has damage in both sides. The damage on the left is significant enough to cause seizures, but we really feel these new seizures(since Jan.) are coming from the right hemisphere. Our hope is to see a significant change in the frequency of his seizures and control the remaining activity with medication. Ayden currently seizes in clusters a few times a day and we are certainly ready to get the surgery completed as soon as possible. This surgery has risks, but we feel we have to give Ayden his best chance for success without seizures getting in the way. The decision to do this surgery is not easy, but the increase in Ayden's seizures has really helped to convince us. In January, we started seeing sporadic seizures a few times a week we are now up to multiple clusters each day and the movements seem more aggressive each time. This past Saturday, Ayden seized and slept off and on until about 3 PM when he finally got off the couch. Our hope is with the "static" that seizures cause gone Ayden will make incredible gains. We are full of HOPE, that this will help him achieve the goals he has for himself too eliminating some of his frustration. Already, many of you have shared your thoughts and added Ayden to your prayer lists. We appreciate all the prayers, kind words, and thoughts. Many people have already offered to help in so many ways, Thank you!

Waiting for a Date...

We just got home this evening and Ayden is still playing in his room just giggling, talking, and laughing. He went to bed at 8:30 PM and its 11:00 PM, OH WELL! :) Listening to him squeal in delight is just too hard to ignore, but much needed and appreciated. Dr. Wylie sent us home today after reaffirming that she would be presenting her opinion, the VEEG, and MRI to the Epilepsy Management Team. Dr. Wylie believes the current seizures are coming from remaining tissue in the right hemisphere. The recommendation is an anatomical hemispherectomy. They meet once a week so within the next few weeks we should get a call to set up Bub's next surgery. The difference this time, functional vs. anatomical hemispherectomy, is the amount of the brain tissue that will be removed. Although it is more invasive and takes a bit longer for the recovery, we will not be losing ground in his development like we did before. There will not be a need for the inpatient and intensive therapy afterwards and we can just continue his current therapies when we return. Our biggest concern/reservation in regards to the procedure is once again the factor that makes him different from his hemi peers, the HSV. With his first hemispherectomy, the HSV flared up and delayed recovery, but it did respond to the Acyclovir and went dormant again. At that time there were only 2 other cases like his documented so there are still unknowns, we will just pray that the virus will be controlled as the brain heals after surgery.
Why take the risk? Although his seizures are mild now, they are still seizures and could cause falls along with the cognitive damage that cause every time they take a little bit of our Bubba with them. He deserves a chance to be the best Ayden he can be and we have to give him that chance to thrive without the interruptions seizures create and the fog high levels of meds cause. We don't have a date and won't do any planning until then. We don't plan to delay because there is never a "good" time for brain surgery, the sooner the better.  Our hope is to be back to "normal" within a few weeks after the surgery, but we will see. Ayden is and always has been quite a fighter! We truly appreciate the prayers and thoughts from every member of Ayden's village :) We feel incredibly blessed to have our Hemi Family to field our questions and understand our concerns and appreciate the notes, calls, even late night texts from friends and family. Thank You! 
(PS- it is now 11:24 PM and someone is finally sleeping...)

Spring Break in Cleveland

I talked to CC today and we will be admitted on Sunday, March 25th to the epilepsy monitoring unit. I am glad we could get it scheduled over Spring Break because it will save sick days, sub plans, and we will be able to stay as long as needed to record seizure activity.There are just a lot of unknown variables right now so the sooner we get this figured out the better. We are headed to Walton this weekend for my niece's birthday @ the skating rink so that should be fun. If we get Bubba on skates video and pics will follow.
On a bright note, Ayden's Avengers  - our Hemi 5K team is growing. We are planning on running/walking together the weekend of May 12/13th. If you would like to join us go to
http://hemifoundation.intuitwebsites.com/index.html
 Click on the 5K link and sign up as a virtual runner using our team name "Ayden's Avengers"
You can sleep in and get a t-shirt anyways OR join us for the 5K and then a BBQ later that day.

Running!!! :)

Step B...

When we spoke to the nurse at Cleveland a few weeks ago the plan was to stay on track with our local neurologist's plan. The hope was that we would see the seizures disappear. Today, we met with our local neurologist and I showed her the seizure footage from the truck on the way down to the appt. We have very little room left on his current meds and we have seen seizures return on a daily basis a few clusters a day. When I talked to the nurse at CC I asked the inevitable question about 'What we do next if the seizures don't go away?'. The explanation I was given was it is a three step process: A - Try meds, B-Testing/Evaluation, C - Surgery. I absolutely love Dr. Khan as she is so easy to talk to and down to earth. She said there really wasn't any reason to prolong the process and that it was time to go back to Cleveland for testing. She said it is important to remember if he is not a candidate for another surgery we will continue to explore other options. However, if surgery is again an option we really need to consider it. After we left her office I called Cleveland, and spoke with our Neuro's office there.  A nurse called to confirm my message and said she would see what Dr. Lachwani wants to do. So we will wait and hear something next week. We know other Hemi families that have had another surgery after the initial surgery (anatomical after a functional hemispherectomy), so this is not a total surprise. While Ayden's seizures are mild right now, we have to think about what the seizures are doing to him, especially long term.  Dr. Khan was talking about how Ayden is so sedated by the medications today as he was leaning against me and let out a big ole yawn at the perfect moment...Such a ham! No matter what the circumstances Bubba can charm anyone!
So there it is...the answer to "How's Ayden doing?" :) There isn't much we know right now, but we are dedicated to giving Ayden every opportunity to be the best he can be.

SSSHHHut the door!

To start this post we want to tell a little story...Ayden has loved a few naughty words for several months now and one of our biggest fears has been his use of those words at school. A few weeks ago he came home saying "Ssshhut the DOOR!" We really felt the shame and worried about how big the problem must have been for the school since they saw the need to teach him that phrase to curb the use of the word. About two days later, I heard Ayden singing "1,2 Buckle my shoe, 3, 4 Shut the door!" - BIG SIGH of relief :)

In regards to developmental progress, Ayden LOVES to sing. It isn't always clear, but we really enjoy his voice. He has been fortunate enough to participate in Music Therapy since January @ IPFW and really enjoys it. Communication is still limited mostly to one sided expressions, but Ayden will occasionally bring up things that give us hope. For example: "Ayden did you see Miss Tasha today? Did you have a good day @ school?" Normally his response is nothing or a song, but the other day he said "Line Leader". I have no idea if he WAS actually line leader that day, but we celebrated anyways! :) We are very glad to have our outside speech therapists working with him each week at Brooke's house on peer interactions and some behavior modification. He absolutely loves learning and showing what he knows we just need to help him keep his behavior in check and use his stubbornness in a positive manner.
Physically, Ayden walks everywhere, and we can't keep him out of ANYTHING! The cabinets are his favorite place to play and nothing is safe on the counter, he loves the using toaster as he says "Cooking!" Lefty has been working more than ever and our therapists at Parkview are working again with some limited restrictive therapy during OT/PT.
Medically, we are cautiously waiting to see what is next. Ayden started seizing in late January;These seizures are different from any seizure activity we have seen since the surgery. We believe they are originating from the right side of the brain because they are left sided myclonic jerks in clusters, just as we saw prior to surgery. We have been in contact with both of our neurologists and are just playing the medicine game. We have increased Ayden's meds over the past few weeks hoping to see the seizures disappear. When we increase his dose we see some wonderful things happen, the seizures subside, he seems more cognitively alert, sleeps better, even seems happier. Then within a week or two we see seizures again and we are maxed out on his current meds at this point. He has had a cluster each day this week since Thursday sometimes more than one. When Ayden was med free for those months, not so long ago, he was happy and active. The medicines not only put him in a fog, but may not work to prevent the seizures from any remaining tissue on the right side. Another surgery could be in the future if we do not find a combination that works. Surgery is not something we want for Ayden so we will continue to wait and see, a follow-up at Cleveland is probably the next step, but we would rather wait until the seizures are more frequent to avoid a long VEEG. His seizures are mild right now so we are just enjoying the progress he makes, the happy times when he acts likes any other 4 year old boy, teasing his sister and giggling about bodily functional... :)
We are so lucky to have Ayden's caretaker, Brooke, who continues to bear with us as we go through ups and downs with his mood/meds/etc. She was the first to see the seizures reappear and has done a great job tracking them for us. The school has also been helping to document anything and everything and that has really helped. Without Grandma and Poppa to run Bub to therapies each Monday he would not be making the gains that he has so we are indebted to so many people. Every member of Ayden's "Village" it is a blessing. Thanks to all who help by praying, listening, and offering support.