May Update

Originally posted May 12, 2021 -

It has been awhile since my last update.  I think I felt for a few weeks there that I really didn't have much that was positive to say, so maybe I should just keep my thoughts to myself!  Out of all the challenges we imagined we would face with Jacob, this issue of constant and debilitating musculoskeletal pain was not one we anticipated.  It's so hard to watch your child hurt every day and not be able to relieve his pain.  We do what we can with positioning and whirlpool baths and OTC pain meds and massage and sensory distractions.  Some days I question whether I am doing more harm than good by putting him through all these therapy sessions.  His function and interaction is important, but if we're making his pain worse, then what's the point?

Finally at the end of April we did our first round of Botox injections in his quads, adductors and peroneals in his lower legs.  The actual injections were not pleasant for anybody, but within several hours we could actually see the cloud of pain recede from his eyes.  He was clearer, more relaxed, and I could actually get his braces on his feet again. His little feet had been so frozen in place that we couldn't use his AFO's.  Some pain and stiffness has returned, but it's still much better than it used to be and I'm so thankful this is an option that provides him some relief.  Insurance should pay for him to get these shots every 3-6 months as needed.  Jacob's brain injury causes his brain to not send the right signals to some of his muscles.  The average person can contract and relax their muscles to move around -- Jacob has some muscles that are stuck in constant contraction.  We can't change the signal his brain is sending, but we can block the nerve from delivering that signal to his muscle with the Botox.

As we gained control of the spastic muscle pain, we realized his hips were also causing a great deal of trouble.  He just seems uncomfortable all of the time and does not want to move around or play during his therapies.  We will see ortho again next week and make a plan.  It's possible we could try some steroid injections in his hips first, or we may just move forward with surgery.  Because of his ongoing pain, if the doctors want to proceed I am ready to agree.

Right now we are in the middle of a planned stay at Childrens and we did have some positive news about his seizure activity.  Although it is constantly increasing, his wonderful neurologist reassured me that the majority of his seizures are not acutely dangerous.  They're becoming harder to control and we're still walking the path of how much we can and will do to control them, but she did ease my constant fear of his sudden spontaneous death due to his epilepsy.  He's having one type that does affect his breathing, and it's those bigger ones that we are more focused on trying to minimize.  He's switching over to a ketogenic diet and so far he's tolerating the new formula well.  Our hope is that the diet may help lower the number of certain types of seizures he has, and from there we could cut back or eliminate one or more of his seizure meds.  It's difficult to know with Jacob how much of his declining awareness and function is due to seizures (likely most of it) and how much might be due to side effects from his medications.  I feel very good about how we all seem to be on the same page about his care -- we want every med he needs and absolutely no meds he doesn't.  We want him as awake as possible while still as comfortable and pain free as possible.  It's a balancing act we will do for the rest of his life.

Because he's my last baby (for now) I have been putting off moving him to a bigger bed.  He has been so much more comfortable in the big adjustable hospital bed these past few days that Kyle and I decided it's time to get one for him at home.  As is typical for us, we found one for sale that will allow us to avoid fighting with and waiting on insurance, so he'll probably be moving into his big boy bed when we get home.  It hurts my heart a little to know that I need a hospital bed in his sweet toddler bedroom, but luckily his daddy is an amazing carpenter and we have already been on Pinterest to see how you can disguise those adjustable medical beds to look like regular beds.  We like the hospital bed for him instead of a sleep safe bed (that has crib-like sides) because he doesn't move around enough to need the sides and we like being able to lay down and snuggle with him.  Once he has a bigger bed I don't know how we will keep his brother and sister out of it!  Its so sweet to always find them playing and watching tv with him in his room, even though they usually leave behind a big mess!

We have been without nursing help for a month and a half now, so I have been managing him on my own.  It's harder on Jacob than it is on me, because when we absolutely have to get out and about he has to come with me.  I try to minimize the number of times we have to move him from car seat to stroller and back again, but it always causes pain.  I'm looking to snag one of the aides from the school that we can train and pay out of pocket this summer to help me look after him so he doesn't have to leave the house so often.  Or maybe a new nurse will be available soon!  Jacob is definitely total care and he keeps me busy around the clock.  We are so lucky that his daddy knows every little thing about him and can take over whenever I need a break.

For now, we keep pressing on.  He is so brave.  He struggles through so much and endures so much in our efforts to help him.  He is so precious and so very loved.