Home with Hope

We made it home last night from Wisconsin. Ayden is not cleared for school until Monday, but fortunately for him he has two weeks until Deb and Vic pull into our driveway again. It allows us to keep a close eye on him over the next two weeks to see if this change works.
On Wednesday, the surgeon went in prepared to replace the whole shunt if needed, but there were no obvious defects or issues so his valve was changed from standard med flow(1.5) to a programmable valve. His valve is set at .5 now so there is more fluid being drained our hope is that this will help. It is a bit of a guess and check system so time will tell. If you asked me right now if I feel like it is working, I would say absolutely. However, there is risk of overdraining so we are keeping a watchful eye for headaches and other signals as time passes. This morning I have watched him wake up happy, WALK everywhere this morning - No Scooting!! He has yet to come and sit on the couch, this for me is HUGE! I will feel better after we watch this continue for the next week or so. I am reserved in my opinion as I know Ayden always has what we call a placebo effect post hospital visits. He is always happy and relieved to be home, not that we can blame him. Our next visit is a follow-up on Jan.6, if needed. At that visit the shunt could be adjusted again if we feel we are not at the right place, but we can also postpone it if we feel like it worked(fingers crossed). Time will tell, and I hope this is the answer we needed.
I hope that we can relax and enjoy the holidays. It is amazing what a trip to Ronald McDonald House and a large children's hospital in December can do for your heart. We are so thankful that we are home with a healthy kiddo. The RMH house was amazing, this is the first time we have stayed in Milwaukee at RMH and we are hoping it was our last. I cannot say enough about how amazing RMH charities are for families, if you ever have the chance to support them in any way, please do.
I am hoping this is our last post for awhile. We didn't do Christmas cards this year, I have yet to get the kids' gifts for teachers, aides, and bus drivers, and I am just going to have to plan to mail gifts to my colleagues. I really thought I would get it done before we left on Tuesday, but we ran out of time. There are half made buckeyes and oreo truffles, sugar cookies uniced...I just had to admit defeat, and stop.
This trip was different, we were rolling the dice, and taking risks. I was honestly so afraid of being wrong and having something go wrong. We are home for the holidays, and that is what matters. To all of the friends we have forgotten, lost, or just plain ignored please know you are not far from our hearts and minds. You are never taken for granted, even if you feel that way at times. Thank you for the continued prayers and support. We pray this works and we see more of what I see today from Bubba everyday.  Merry Christmas!

Headed in the Right Direction

Ayden had a chance to see his Parkview PT over Thanksgiving break. She noted his loss of gross motor

function and fatigue since July, her opinion and report are important as we work for a solution. Our neurosurgeon made time for us on Thursday morning. He wanted to talk with us and see Ayden in clinic. Bub and I headed to Wisconsin Wed. night and talked with Dr. Lew on Thursday. He said the imaging is not showing an obvious problem with the pressure/shunt flow. However, the problems he has had, gross motor loss and fatigue have been constant since July. Both his pediatrician and his neurologist have done their jobs, eliminating the possibility of other causes. His neurosurgeon has ordered another thyroid test to be sure we have ruled out everything. We will schedule a date to "explore" the shunt soon. He said he will start by checking the current shunt function, then we may look at replacing his anti-siphon valve, and adding a programmable component to help find the right balance of pressure without future invasive procedures. The surgery itself will depend on what they find so it is a bit unknown, but without any complications we should expect to go home the day after surgery. He said we have done what we needed to do, and exhausted all of our other options. We have the choice to accept that this is the new "normal", or do the exploration surgery. The explorative surgery has minimal risks compared to his previous surgeries and may show us a problem that just cannot be found with MRIs and CTs. I cannot as his mom except that this decline is ok. Yes, he has CP and his brain has been through significant trauma over the years, but we will always push for his best chance at success. The dilation episodes are not seizures, and Dr. Lew does not think they are related to a hydro issue, unless they are caused by the fatigue. He said they may just be one of the neurological issues  that we cannot explain. Ayden is ok, he is unsteady and tired more, but this is nothing different from what he has been for months. If we would notice signs of a shunt failure, we would of course take action quickly. We will continue to pray that nothing gets worse, but this is just a problem that we would rather take care than accept as the new normal. We want him to be safe and continue to learn, not fall backwards. We feel confident in the plan and hope to have a date soon.

On a positive note, we made it back in time Thursday for his annual Christmas Program at school. It was great! It is a lot of work for all of the teachers, aides, and some of their family members too, but truly a blessing. This is the picture I chose to post because this is our focus right now. We will celebrate the holidays as a family and wait to hear what is next. 

Thank you to everyone that includes Bub in your prayers. He is amazing, and blesses us each day by the grace of God.

"Oh darn it!"

I started the blog the other night, but after driving home from Milwaukee and a night on the unit for a VEEG. Loading this picture is all I did.

Then I started to write this morning -
He is still sleeping, but starting to stir... Today we are headed to see Dr. Winsor in Hartford City. She is amazing, a wealth of knowledge, and one of the few specialist that is reasonably close. Maybe this afternoon we will have some answers, maybe not.

And now...
We have answers, but not solutions.

Why the title? Those that know Bubba know he has a mouth when he is angry. In an attempt to let him vent without the language, we have tried to teach some phrases. He still tried to push buttons, but I was really happy to hear "Oh darn it!" more often than other phrases. It gave a nice comical moment to a sometimes intense situation. It really just kind of sums up our week. 

Oh darn it!

Ayden has not been himself since this summer when he stopped swimming and diving down in the water. We went to Wisconsin Childrens in July, but there was nothing beyond clinical signs of an issue. So, we had some nice chats and said goodbye.
4 months later, Ayden is still tired, more than he should be. He lacks interest/energy to do some things he used to do. For two months the school has been charting what we nicknamed "crazy eyes". They are periods of intermittent dilation that do not respond to light. He falls more. He talks, but trails of or gets slurry more often. So we keep calling and talking to our neurologist, we tried adjusting his meds, but nothing changed.
We were advised to bring him to the ER on Tuesday. Bub and I headed there hoping for some answers. The answers we have are good and helpful, but not solutions to the problem. We had a fast MRI, and still no visible signs of hydro (not that we expect to see it on film). Then we were admitted to the Epilepsy Monitoring unit for a VEEG. We were able to record multiple events of the dilation and drooling episodes and get a full night of monitoring. We know there is no underlying seizure activity so it is not seizures. The neurosurgical team on our admit were not compelled to tap his shunt, so home we went. Fortunately, our neurologist consulted with Bub's neurosurgeon and he wants to see Ayden to address our concerns, but we do not have that appt. set yet.
All of the "loss" we see is unacceptable and cannot be ignored. Our neurologist understands and recommended we go to his ophthalmologist to check for pressure on his optic nerve. We did that today, we had to go to Hartford City to see her before December, but as always, it was worth every minute. She reassured me that all of my concerns were valid. At this time, there is no pressure on his optic nerve. His eyes were already dilated enough we didn't even have to give the drops for her to check. She told me to call Wisconsin today to follow up and keep the search for a neurological cause going. I did not call today, but I will not wait long.
Our neurologist also wants us to meet with Bub's PT (Our Parkview PT that has known Bub since he was 2). He needs documentation from her about the actual loss of gross motor, we have that appt. set for Wednesday.  Her report will be faxed to WI along with Dr. Winsor's report. As of Wednesday at noon our "homework" will be done.

So now what? We wait. 

 We enjoy the holidays as we can, after all Bub has his Christmas program in less than 2 weeks. I feel better knowing that the neurosurgeon we meet next will be OURS; The surgeon we went to Wisconsin for in the first place. Our hope is he will have some advice, ideas, or guidance. It is a challenge to convince others what your gut is telling you, so for now we establish our "case". Sometimes you really can feel like that is what has to be done. Could we have our pediatrician send us somewhere to get the shunt tapped for pressure, without any doubt. The problem with somewhere else, is it means starting over, and we really do like where we are. If we feel it is getting worse or progressing faster, we will do just that.

Does it mean when Ayden is sleeping well past his normal wake up time I don't worry about coming into the room and finding something I don't want to see? No. I will worry, its my job. We will keep a careful eye and look to the Lord to provide some solutions soon. He has come too far to lose anything for a long period of time. I am so thankful for all of the people who care for Ayden and will keep an eye on him when I cannot. I am thankful for the Hemi Mommas that have helped me feel sane and know what to ask over the past week as I have felt like I have to plead my case for Bub.

 Thank you to everyone who keeps Bub in your thoughts and prayers. 

An Unscheduled Trip

Last Friday we spent the day at Parkview, some days Ayden has been better than others. Our pediatrician shared our concerns and we were in contact with our team in Wisconsin off and on all week. On Friday, they squeezed us into clinic with an associate of our neurosurgeon, and then Dr. Hecox, our neurologist,  came in afterwards. We came home from Wisconsin Childrens last night around 10 PM. We know it is not seizure activity, our neurologist ruled it out with an EEG yesterday, but we know there is something wrong. Ayden is tired, more than he should be, and being tired is affecting other things like his coordination and his speech. Our neurologist and our pediatrician feel it is a pressure issue, but without enough data neurosurgery will not take any risks at this time. A follow up CT has been ordered to monitor the situation.

We have to take the wait and see approach. It is not one I am fond of. I can tell you there is no better sound than hearing the knocking of my Bubba's hand on the side of the bed. It means that he woke up, on his own, and he is ok. He is OK, he is happy and smiling and the ornery little ... he always is, but then he gets tired. He sleeps when he needs to. Sometimes he sleeps for 20 minutes, and sometimes for two hours. It is not enough to rush into anything, but rather a reason to keep a watchful eye.

It is ironic, as I type this I am up watching "Gifted Hands" and Dr. Carson is performing his first hemispherectomy. We are so lucky to have our Bubba, he is a blessing for sure. He was born during the age of the internet. Now, a mom who is worried, can reach out to others who have walked this path. I am so thankful for our hemi family. The support we need is just a link, message, or text away.

Ayden is ok, I think that is the most important fact to know. I have not shared much of the last week with many, but as I have received some texts with questions this is always the best way for me to try and answer.

Sitting in the Rocking Chair

Tonight I sat in the rocking chair with Bub. For so many years I have rocked my Bubba Bear through good and bad. This was different. You see he was sitting next to me, rocking beside me, and telling me about his day. Sure it went something like:
 " I EAT a CHEEESEburger with Lori. Haha! Whoops! Fries, french fries on the floor."

It was in that moment, the disappointment of my day did not seem to matter. It was in that moment, I stopped and realized how far he has come. Maybe to see how much my baby boy has grown up I needed to step back and take some time away. We have been able to do that more in the past few weeks as we have respite time each week. Sometimes it is hard to leave, but it truly makes me value the time I have with him.
This summer has been busy as Nessa completed her first year of 4H. It has given us opportunity to focus on Bean and give her time one on one with each of us, extended family, and friends too.

We have taken Ayden to the fair and he has enjoyed it too. However, we are planning a trip to the State Fair without him in August. We want the focus to be on Nessa and what she wants to see and do, not what kind of mood Ayden is in or if he is getting enough to drink, etc. I am excited to go without the thought of pushing Bub's chair all over or trying to figure out where or how to change him, but then I am feeling guilty too. My little boy is growing up and as any mom knows you just want time to SLOW DOWN. The thought of making memories without him seems wrong. It seems unfair to him. A very good friend reminded me today that Danessa has waited and gone without this or that because Ayden wasn't in the mood or Ayden need to do this. We went as a family to Holiday World last month for vacation, we made memories, Ayden had fun, and rode rides. This trip to the State Fair is just a day trip long enough to walk around, check out all the projects, and maybe let Nessa chose where to go or what to eat. Every time the doubt creeps in, I try to remember how excited Nessa was when we shared the plan. I know she loves her brother, but sisters get tired too, and that little 2 year old with beautiful blonde curls isn't a baby anymore either. She was at the fair walking around proudly with friends. Loving the independence and how grown up she felt so much that she may or may not have had trouble hearing me call her name as I walked behind her for awhile.

The Lord has blessed us with quite an amazing little family, two beautiful kids that each have very special places in our hearts. We have been blessed with great health for both of them. As I have said before this blog is becoming less of a Caring Page site transition and more of just a place to share success. Tonight I can tell you with full confidence they are growing up FAST! Together as a family or each in their own way we want to spend the time with them that they need. We are Blessed.

PS. Yes, I did put Bub on my lap and rock him a bit before bed tonight too. It is probably a pretty ridiculous sight to see, but that is ok by me.

"Mom, what does Ayden have?"

I know this is Bubba's blog. I keep it going because when I finally closed down our Care Page, Ayden went on a downward spiral medically and there is a big part of me that fears that happening again. There is nothing major going on with Ayden medically right now and other than minor achievements and silly moments there is nothing to report. We are happy, our nights out consist of a trip for dinner usually at Pizza Hut, although last night at we braved Applebees, and a trip to the grocery store or Bub's favorite, Menards. We are a happy family and it doesn't take much to make it a good night. We are blessed, I know that now. I am not sure in the past I could have imagined reporting the last few statements as I did, but there it is in black and white.

 So humor me while I change gears...

  Danessa had just turned 2 a few days before Ayden's stroke. In fact, I watch videos from that day and the days that followed and wonder watching Bub's irritability closely. Nessa has always been clingy, very attention driven, but somehow she got lost in the shuffle. In the videos of our kiddos in the early years, when we still took time to record videos that is,  she is so innocent and happy. She loves her baby brother and its obvious. If you watch the videos for too long you start getting clips of Ayden laying on the floor with "Do you see that?, Bubba? Come on Bubba, Bubba?". Ayden's epilepsy has been so complicated and hard to diagnose. We like so many other parents relied on video. Before we owned smart phones the camcorder was the only device we could use. The videos tell more than just the story of Bubba's epilepsy. They tell a story about a little girl with adorable curly blonde locks (that she waited two years to grow). They show how quickly Bubba's health stole the spotlight.
   We have always tried our best with Danessa, but there is so much she was just too little to understand. When we were pulled away whether it be in an emergency or with lots of weeks of planning, Bean has been sent with our family both blood and beyond. Whether it be with Grandma, Mami, Aunt Julie, or the many others over the years, Bean was taken care of. I guess that is why we just never really thought about how little she understood or understands today. She is older now, and she is trying to figure it all out through pictures and faded memories. She remembers watching the chopper leave the hospital with her brother in it. She gets excited when she sees a seizure herself without us saying a word. When I have said things like, "Well, your brother only has half a brain and he is pretty amazing." she will sometimes ask me to explain and try to understand.

Then came the question afterschool Wednesday, "Mom, what does Ayden have?"

I knew she wanted to talk because she had already started with her serious conversation mode before the question ever came out. She was talking about a book she purchased from the book fair and how it was special because it was kind of about her. Then she said," So seriously mom, does he have Autism?". My answer was a long string of sentences, babbling, stuttering, and way more than she wanted.

 WHY? It isn't as simple as a label. 

 Bub was approved for the Family Support Waiver in September of this year, and since that time I have done all the legwork, papers, meeting, phone calls, and more papers. On a bright note, we may actually start getting to use the waiver by next month for some respite and rec. therapy. Each time I have struggled because the conversation or questionnaire starts with "Tell me about Ayden." or "Primary Diagnosis". The answer has always been hard for me because he doesn't have just one "label".  Did he have an ischemic stroke? YES. Does he have sensory processing disorder?YES. Does he have a visual impairment? YES. Does he have cerebral palsy? YES. Is he developmentally delayed? YES. Does he have intractable epilepsy? YES. So what one label is there? What one foundation should we support? The answer is there is not just one, there never has been. It has been a domino effect since it all began almost 7 years ago. I find the answer alway changes depending on the need. For Respite, the individual needs to know that he is a sensory seeker, unaware of his own safety(yep, there is a specific med code for that one!), and has a visual impairment because choking or hitting something because he doesn't see it is much more likely to happen than a shunt failure or seizure. For Rec. therapy his hemiplegia is going to be important, along with visual impairment, and his epilepsy. For new doctors we start at the stroke...it just always changes.

Needless to say my matter of fact 8 year old was not happy with my answer. She wants a label because she is to an age when others ask, she wants to understand, and she even wants to fit into a group. She wanted to just say my brother has Autism so I am like the character in the book. I tried to explain that she is like the character, she loves her brother, things are and will forever be different for her in comparison to her peers. Then we talked about the positives - Her brother will never make fun of her drawings like a real little brother, he will always look up to her, always want to do all she can do. He will always think she is AMAZING.

So what does Ayden have? 

He has an incredible big sister.

He has a great sense of humor.

He has a love for life and nature, that everyone should have more of.

He has fun playing in his sister's room for hours, as they have been doing so well this morning.

When we were watching him in that bed, 2 days after the stroke, wondering if he would make it. I told God I just wasn't ready yet. I just wanted my Bub for a little longer. He has given us almost seven years so far. I am so thankful for every day he blesses us with our little boy. He is not the little boy WE had planned, he is not the little brother Nessa wanted, but I can't imagine our life without Bubba. He doesn't need a label. If you know our Bubba, you know he is special, and there is only one...No labels needed.

A Pink Shirt, Spongebob, and Spring Break

Ever have one of those days? Today was it for me. even though it has only been about a week since the last post I just need to share a Bubba story. You know it is funny I am sure every special needs parents has had the conversation with others or at least in their own mind. 

"What if ..." 

Sometimes I think it is so easy to get wrapped up in the disabilities that you forget to share who your child is. Just a few weeks ago the conversation happened and it stuck with me. These past two weeks have been full of fits, nothing like we have seen in the past, but more defiance than normal. He has started to backtalk and argue with this little look. The best example is the bus, he has really been resisting getting up, taking his meds, and even getting on the bus.

 The one morning when I said, "Let's go see Deb and Vicky". Ayden replied with, "No , I ride in Daddy's truck!" That is when things cleared up pretty quickly for me.  Bubba is stubborn, ornery, and smart; He is also growing up and going through some of the same things his sister did. He thinks he is a big boy and wants to argue over why he can't control more of his world. Something natural for kids, but yet I just didn't think about it. The battle over the bus has been a pain, and we have had some pretty crazy mornings. Last night I decided to change that with one little purchase. What was it? A pink shirt. Yep. I showed it to Bubba first thing this morning and he was up dressed and ready to go before the bus even pulled in the drive. He was so proud of it he hopped on the bus happy and excited. 

Is it that simple? Yes. Bub used to try to pick Nessa's clothes when they shared a room. We always said "No". He sees pink as the color of rebellion and since he still looks pretty handsome in it, it is just fine.  The wonderful morning was quite a blessing for me and started my day off right. Today was rough, but I found myself smiling about the little pink shirt. Well, that no so little pink shirt and the smile that wore it all day. When he stepped off the bus he was so happy and ready to watch some Spongebob. He plopped right on the couch, and the best part was he said "sit here" tapping the couch next to him.  We cuddled and then he assumed his Spring Break position (below).  It is crazy to think in one instance he is growing up, and in another he is still my baby boy that can make me smile and erase the pain of a bad day.  Gotta Love my Bubba! :)

Growing Boy!

 Tonight at supper we were eating fish sticks and Bub wanted more so he just reached and said "eh". I stopped him and said use your words please. 

His reply, "(burp) Can..(burp) I..(burp)..have..(burp)..more..(burps) please!"

Yep! That is our boy...

Needless to say he is a pretty happy to be all boy and growing up so fast. He loves shooting hoops, cars, and anything that rolls or bounces. Today was the first day that he has been outside in quite awhile. He loved shooting hoops and getting licked all over by Bear. He had a blast, but was ready for bed right after supper. 

That is it...That is our story right now. Ayden is thriving, we are all happy, and we are just enjoying life.  I know it has been months since our last update and for that I apologize. I always worry about posting anytime Bub is having seizures, so I just haven't sat down to do it. Bub did start with some break through seizures a few months ago, but I feel like we have an answer now. Our hope is the breakthrough episodes we have recorded over the past few months have just been caused by multiple ear infections. We met with the E.N.T. yesterday and planned a spring break appointment for yet another set of tubes. On the brightside, since his last rounds of shots his ears have cleared up and he is feeling better. Hopefully, this minor procedure will keep him stay healthy and eliminate the breakthrough episodes.  We go back to Wisconsin for a follow up soon, but we don't expect anything new except a warm hello and conversation. Ayden is doing well, growing up, and enjoying life. Thank you for all for keeping our Bub in your thoughts and prayers. We are very glad to be so blessed with so many people who love our Bubba.