Cerebral Palsy is:
* incurable - you can't treat it, you can manage it
* non-progressive - one-time brain lesion, that will not cause more damage
* permanent - the brain cannot "heal" itself
* not contagious - you can't "catch" cerebral palsy
* manageable - treatment, therapy, and surgery can help minimize barriers and increase independence
* chronic - long term, and will NEVER go away
This week Luke had his first appointment with the Cerebral Palsy Clinic at Riley Hospital. To sum the day up, we go and see all kinds of fields of doctors and professionals all at one time instead of many appointments. It sounds like a great idea, which it is when you live so far away. However, sitting in a tiny clinic room with a child that has intense white coat syndrome and unable to move around can only lead to you wanting to pull your hair out. Then you add on the in depth conversations, questions, and decisions and you have one LONG DAY! This was also the first time in over a year and a half that Jonathin has been to an appointment. I have taken the reign on Luke's health pretty much since birth due to not working. However, with me working and this being such an in depth appointment I pushed him to come along. Also, there is no way I could have been alone with Luke for the day. Think of a typical hyper 2 year old, then add on lack of real communication, and incredible stubbornness and you will see just a sliver of Luke locked in a room.
From the get go Luke wasn't happy. He hates to be weighed. Just the idea of placing him on a weigh table makes him hold his breath and scream. Then move him to the length table. Where we have to hold his head against one board while we stretch his legs out to measure his length. He hates his legs stretched. His hamstrings are tight and it makes it painful.
From there we move into the clinic room. Riley is such a busy place and the rooms aren't crazy fun. There is a table, 2 chairs, and the dreaded computer! Now if you know Luke you know he LOVES computers! So having this computer in reaching distance only made the day worse. Add the idea of laying on another table and it just keeps getting better. We were able to keep him entertained for a bit with the light switches, but holding up a 22 pound kid can get old quick. It was a total tag team event. Our first visit of the day was with Dr. O'Neil with developmental peds. Now we have been seen by developmental peds since we were discharged. I was never really happy with the continued care we received. For over the past year we saw a nurse practitioner. I felt like I had to beg and demand for what I wanted. Today was a little different, which I'm grateful. Dr. O'Neil went into depth for us about Cerebral Palsy since it was our first visit to the clinic. He pulled up Luke's MRI from a year ago. Now we had looked at it before and that is when the diagnosis was made. However for over 45 minutes Luke's exposed brain was on the computer. We learned a couple more things:
1. Luke has a smaller brain than he should.
2. He has a lot of gray matter and not enough white matter
3. He has a lot of scar tissue
4. His ventricles are larger than normal
What does this mean??? In Dr. O'Neil's words...Lucas has very significant brain damage. Let that soak in as a parent of a 2 year old...Your one and only child has significant BRAIN DAMAGE. How would you handle that? Cause I seem to just let it hit me like I am a wall. I've heard it, heck I've witnessed it, but you are never prepared to hear it. I know Jonathin wasn't ready for that. I feel like I've told him over and over Luke will have issues, but hearing it from a doctor hit him. We still haven't really talked about it between the two of us. We are completely different when it comes to handling this situation. Jonathin doesn't want to talk about it and that's all I want to do. I love to talk about Luke and everything he has overcome. Even though when I am asked about how he is doing, my go to answer is "good". However, do I believe things are good all the time...NO, not by a long shot. I just feel like people don't want to hear me talk about it. We want to only acknowledge the good. So in short, Luke is good.
After looking over the MRI some more we moved onto Luke's hip x-rays. They were done 2 weeks ago when we had a quick visit. I had brought up Luke's constant constipation and Dr. O'Neil thought he would look at the x-ray to check out Luke's bowels....well, all I can say is poop! POOP POOP POOP! This kid is filled to the gills with POOP! Now I know if anyone would look back in Luke's blogs over the past almost 3 years, every 3rd post or so talks about poop and the lack there of poop. Since the week Luke was born poop has been an issue. I've heard every explanation under the sun....not enough gravity, not enough movement, wrong food, not enough water, needs more belly time, just doesn't like to poop. You wanna know the real reason....CEREBRAL PALSY! It is the new "it's a preemie thing" slogan. Along with the nerves that control his trunk and leg muscles being effected by the brain damage, the nerves that go to the gut can be effected. What does that mean, the kids has problems expelling poop! Lightbulb! So....we are now on a retrain the colon routine. After cleaning the kid out with an enema when we got home, (LOTS OF FUN HAD BY ALL) he now gets 1 tablespoon of Miralax every night for the next 6 months to let his muscles tighten. This kid is now a poop and gas factory.
So after the poop conversation we did a little discussion about the future. Jonathin is very adamant about knowing the future. He wants to know what Luke will be like at 18. However, that is something we won't and can't know for years. It did bring up and topic of walking. Dr. O'Neil has a general rule that if kids with CP can't sit on their own by 3 years of age, there is a good chance of not walking. I think the room got real quiet with that information. He isn't saying Luke won't walk, but an idea. Luke can sit up on his own by sitting on his knees, but not on his butt. He has slowly progressed to crawling. It isn't coordinated, but it is dang cute. So I do believe he will walk, on his own time, in his own manner.
After Dr. O'Neil was finished with us, we got a visit from a physical therapist and occupational therapist. They were really happy with our plans and how Luke is transitioning. They were really happy with our 3 therapists also. Apparently the First Steps program up north is better at preparing kids for transitioning to school programs. So really nothing new to expand on more.
The dietitians came in and discussed Luke's formula changes. Since Luke doesn't gain weight it seems, and since we have MAJOR constipation issues we have now moved towards a new plan. Blended Food Diet. This idea has been brought up before to me by our speech therapist. I've played around with it some, but it has always daunted me. To sum it up, we get a very hi-tech blender that you can't buy at the store. I will need to make meals with real food and blend it to a science to get into Luke's tube. It is going to be a process, but I think he will benefit from it greatly. The biggest thing about this blended diet is that Riley is now supporting it. Before now they were against it and didn't support the idea. You pretty much had to lie to the doctors about what you were feeding him. So I am now actively looking into and working towards the blended diet. While discussing this plan we also had the g-tube nurses checking on Luke's g-tube site for us. With me asking about food going through his tube's lumen (hole), at this time, resulted in the nurse changing out his button for a bigger hole. This is just setting him up for the new diet.
This finished up our clinic visit. We then had to put an extremely tired, constipated, cranky kid in a car seat for over 3 hours. Our trip was not so great on the way home. Once we were home and gave Luke some relief, if you know what I am saying, you could tell he started to feel better. So to sum up our day, what we used to answer with "It's a preemie thing" we now answer with "it's a CP thing." Just being general helps, because we can't really say the rhyme or reason to things other than it happened and we can't change it. I know this was in depth and somewhat intense but this was just a day in our little life.
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| Playing before his clinic visit. |
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| So Tired! |
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| Gave up 10 seconds later |
