Balancing Bubba's Needs

This year Ayden decided to try ice cream again.   
He now LOVES IT!! 

 It has been almost a year since the last update. Like we always say no news is GOOD news, and it has been. Ayden has been growing and staying healthy too. We have had some minor concerns, and tried to balance our worries with reasoning, and then of course I am always trying to schedule appointments over breaks versus more days off. 

Neurologically speaking, there has been something off for a bit now and we don't know what it is. We had a bit of a scare in Sept. as he woke disoriented one morning like he perhaps had been seizing, within a few weeks we started to notice his eye drifting off and I reached out to our neurosurgeon in Indy. This led to some quick imaging, a bit of a scare, and then some unsavory truths that required us to re-establish with Wisconsin Childrens Hospital in November. The good news is his shunt appeared to be ok and Dr. Lew and staff welcomed us back with open arms.  They helped us find a new neurologist we met with over Christmas Break(She is amazing!). We really only left Milwaukee to avoid the 4 1/2 hour drive, but we now know it is worth every mile for Ayden. A very quick EEG showed we still have activity, but that is why he has his med and will continue to need it. Unfortunately, the wild goose chase ended with no answer for his eye wandering, but we are happy to be in good hands again on a neuro front. Our Low Vision Appt. in March was rescheduled due to illness so no answers or direction on his eye. I went ahead and set up an appt. with IU Ophthalmology next Monday, hoping for an answer or direction from them as waiting until June for our rescheduled Low Vision appointment is just too long.

Ayden loves to play Sorry! (Simon version)

On the academic side of things I wish I could report happiness and success, but I can't even tell you his teacher's name because he doesn't have one(except on paper). For a kid who knew his letters and sounds at age 4 , "Letter of the Week" curriculum with tracing/coloring sheets in eighth grade is beyond absurd, and inappropriate. We just try to remember he is happy to be surrounded by his peers and that is something we can't provide. He truly LOVES his friends, so we will find joy in that fact and tackle the rest in good time, hopefully before boredom becomes behavior issues.

Two very bright spots are rec therapy and now music too! Ayden continues to love his time with Jen, his rec therapist. They enjoy racing, going to the movies, and of course SWIMMING!! Jayde is our newest addition as she comes to the house on Friday afternoons to sing and dance with Bub. He loves every minute, it was worth trying for a few years to get a music therapist added.  

Last Wednesday, we followed up with Dr. Carpenter who has been doing Ayden's casting and botox for both his left leg and arm. Within just a few minutes, our follow-up appointment turned into a surgery consult with a new surgeon. The botox and casting started last April did make a difference and allow him flexibility to grow 10 cm in the 12 months since, but more intervention is needed now. Dr. Bellflower will be transferring tendons on the leg and arm next week. Ayden will have surgery on Thursday, and then be in casts for about 5 weeks. This is not a surprise for us as it is common with Hemi kids. Dr. Carpenter said we should be glad that we were able to wait so long as it has allowed him to grow without having to redo the procedure after his growth spurts. We want to do everything we can to keep Ayden walking and moving without pain or fractures. Most important to us was making sure we could get it done as soon as possible because we want our boy to be able to swim all summer. I have been VERY worried that we would not get the surgery scheduled until June which would mean another rough summer and weight gain. The extra bonus of next week is having Good Friday to allow me extra time to be with him after surgery without taking even more time off work. Hopefully by the following Tuesday he will be ready to go back to school.

Ayden enjoyed a little walk around the zoo
 after his appointment last week

I mentioned finding balance(ya know up there in the title)... There is a saying that goes "Anyone can handle a crisis, it's the day to day living that wears you out." I think that is where I am. I want to be a good mom, I want to do what is best for Ayden, always. However, what is "Best for Ayden" sometimes keeps me from being able to do my best, or participate in other areas of life. What is "best" depends on who you ask, and ultimately we have to make the decisions. Can we just drop everything EVERY time there is a concern and schedule the soonest appointment available? Yes, we could, but then what? Because there isn't always a clear answer and sometimes we just have to wait it out. I could quit my job to provide the education my son needs, the medical attention he needs, but what about his friends?  Have you met me? I am not stay at home material, I would drive all four of us crazy, no thanks. For now, I just have to do what I believe is best, and hope I can balance everything in between. 

Oh and I can't end this post without mentioning an addition to our family these past few months. Sis is now old enough to date, so as a new face has been around the house I have enjoyed the moments when I see three kids playing Ayden's favorite game, Sorry!  They shoot hoops in the barn and jump on the trampoline together. Of course picking up the Nerf bullets is almost a daily task now, but we have been blessed by a young man who embraces Bub for who he is, that is a blessing. 

As a family we want to thank everyone who asks about Bub and keeps him in your prayers. He is a not so little(officially taller than me now 5'8"!!) warrior with a kind heart and a love for life.