This week we have lots of medical updates to share with you all for both Malachi and Baby Carroll (who is fine so don’t feel the need to scroll to that part immediately). This is one of those updates that you may find boring so if you aren’t a Grey’s Anatomy type feel free to simply look at the pictures haha!
Let’s start with Mr. Malachi. In addition to his regular therapies this week we had a few specialist appointments tossed into the mix. On Wednesday morning we packed up and headed to Vanderbilt to meet with his Orthopedic surgeon.
Quick background info for new readers: Malachi was born with bilateral vertical talus (both feet folded up onto his shins and slightly turned out), bilateral hip dysplasia (both hips dislocated from the socket), and knees that wouldn’t easily bend.
Okay, so here are the quick updates from each of those things…
Feet- no change (which is always GREAT news to our ears). At this point the only direction we can go with his feet is to “worse”. We have done the most we can do for his little feet and they are at least in the right position. They tend to turn up a tiny bit at the outside edges so we keep him in AFOs (ankle braces) 16 hours a day.
Knees- have gone from not bending at all on there own to resting in a bent position! The doctor was absolutely amazed by the progress in his tone. To explain this a bit, cerebral palsy is a brain injury…so Malachi’s issues mostly stem from his control center/brain. His brain was sending signals to his knees telling them not to bend. The brain can continue to make new connections around the damaged ones, and it seems that it has done so in a way that helps his tone in his legs! We are also wondering if the time we had him on CBD oil helped his muscles relax enough to retrain the brain?
Hips- when the doctor saw the change in Malachi’s knees, he was thrilled and thought that maybe there would also be some change in the tone of his hips. Malachi’s brain is telling his hip ligaments to pull tighter than they should causing them to pull out of socket and up. He ordered some x-rays and he determined that while the right hip is slightly better, the left is still very out of place. We were given two paths last year to put Malachi on with his hips…Path A was a very painful major surgery resulting in 6 months of nearly full body casts and the probability that his brain would tell them again to pull out of socket. Path B was leaving them out of place until they become painful (50% chance of this happening) and if it does we would then do a surgery to remove the head of the femur. We have chosen to put Malachi on Path B. This nearly eliminates the possibility that he will ever walk, but we feel that it is the best decision for him. Our course of action has not changed after this week’s appointment.
Take a look at his x-ray and you will see that the left hip (so looking at the right side for you all) is not in the hole that it should be. The right hip is in better shape, but the picture isn’t very clear.
As you know, I have been stressing SO MUCH about Malachi’s spine. Severe scoliosis is common in children with CP and I have been researching that the earlier you start treatment the better. I brought it up to the doctor and he ordered some x-rays of his spine as well.
First of all, you can tell from Malachi’s teeth that he was cracking up during this x-ray picture. Jake went in with him (as pregnant momma’s aren’t allowed), and Malachi was laughing that Jake was holding his head so still. Goofy kid.
Secondly, from the picture you can clearly see that he is starting to develop scoliosis at the base of his spine. If we leave it untreated, it will continue to worsen and we will be looking at a metal rods/screws surgery or a spinal fusion in the future. Both of these surgeries can be very risky for Malachi and we want to avoid them at all costs.
So how do you do that? With bracing. Ughhhhh.
Before I dive into that, a few interesting things to note about the x-ray pic. The white tubing stuffed into his abdomen is his shunt tubing. His shunt is located at the base of his skull and allows fluid to move out of his ventricles and into his abdomen. Pretty crazy! They stuffed several extra feet of tubing in there so when he grows the tubing has room to stretch without pulling it loose. You can also see a glimmer near his heart which is the metal coil we had to place to close his murmur. We would recognize his x-rays anywhere haha! Not to mention all those insanely bright metal teeth that the machine picked up!
We left Vanderbilt and immediately went over for a bracing appointment to try to save us from making the 3.5 hour drive (7 hours round trip) another day. Malachi was fitted for a brace that will go from his armpits down past his hips. He is supposed to wear this anytime he is awake and will help his spine stay in the correct position. It is hard plastic sandwiched between softer padding and would go on top of clothing, so in the summertime we were told to watch him closely for overheating. The part of the brain that controls temperature is damaged on Malachi so any sort of regulation needs can get serious pretty quick. We will have to see how this goes.
But he thought the molding process for the brace was pretty intriguing.
Days like these tend to knock the wind out of us special needs parents. They force you to look at the future…something I desperately try to avoid doing. In order to stay positive, we have to live on a day by day basis, choosing to allow the trials from each day to end when the suns goes down so we can start each day new. Days like these force me to look at the progression our family is on, knowing that things are only predicted to get much much worse as he grows.
All three of us were pretty wiped out after the whirlwind of appointments and decided to grab some dinner and start the 3.5 hour drive home. Last time we were in Nashville we took Malachi to the Rainforest Cafe and he thought it was pretty fun, so we headed that way again for a special dinner. Jake and I also used this as our anniversary date dinner to justify getting a steak haha!
And for anyone wondering, yes that is absolutely a baby bump. I tend to show insanely quickly and this pregnancy has been no exception!
We got home just before midnight, exhausted and slightly cranky. We will have to go back up in about 6 weeks to pick up the cast and go in for more x-rays. We may just make a mini-trip out of that one and find a hotel with a pool for our boy. Those long days are so hard on him.
This week we also had Malachi’s annual physical. He has lost several pounds since we took him off the sugary drink the GI doctor wanted him on. We aren’t happy with the scale numbers right now so we are trying to increase his calories as naturally as possible. Malachi also got his first MMR vaccination to get him ready for entering school in August. He smiled sheepishly at the lady when he got his shot, looking at her like “Did you just pinch me?” His pain tolerance is insanely high! Before he got the shot I had them run a CBC on him to make sure his system wasn’t fighting anything off…he has had a random cough lately but we assumed it was a new neurological tic he had developed since he will stop coughing the second something distracts or intrigues him. I also had them check his oxygen saturation since he has been doing a new raspy breathing thing in the mornings, but everything came back clear! Just Malachi being his quirky little self.
Malachi has done great with the vaccine and has not had a fever. We were very cautious about this one as it can cause high temperatures, which increase the intensity of his seizures, but we are very blessed to tell you his temp has stayed normal.
Now time for Baby updates…
A few weeks ago I went in for one of my routine OB appointments and the doctor told me that my bloodwork had come back with some extremely rare abnormalities. I am going to assume that none of you have heard of this before and I will try to break it down into very simple terms so don’t be offended by my elementary language.
There is something called Kell antigen that can be found in blood- it is extremely rare to have this antigen- only 9% of Caucasians have it. Kell antigen alone is not a bad thing. To make this a little more easy for me to explain, I am going to call a Kell antigen person “Kell Positive”.
The rest of the population we will call “Kell Negative”. This is the category I fall into!
If the blood of a Kell positive person ends up in a Kell negative person, their body becomes “sensitized” and will create anti-Kell antibodies and try to kill the antigen off. When they tested my blood they found that I had these antibodies meaning that somehow Kell positive blood got inside me and my system was fighting it very hard.
Worst case scenario= Jake would be Kell positive and the baby had inherited that gene from him. In this scenario, my body would try to destroy the red blood cells of the baby, ultimately killing the baby without intense monitoring and blood transfusions in utero. So they would take an insanely long needle and put it through my stomach and into the baby to give the baby blood rich in red blood cells for my body to attack. They would watch the baby and as soon as they saw he/she was getting anemic we would do another transfusion. Babies in this situation have an 80-90% survival rate, but in addition to several blood transfusions in utero, they also require more immediately after birth and have to be monitored very closely. If we weren’t already high risk, this would have sealed the deal.
Best case scenario= when I had Malachi I received 5 blood transfusions. One of these transfusions could have been from a Kell positive person. In this scenario the baby would not be in jeopardy and neither scenario puts my life in jeopardy (remember Kell in itself isn’t bad unless you are pregnant with a Kell positive child).
There is a WHOLE lot more to it, but hopefully this gives you a little snapshot. When the doctor explained all of this to me I obviously FREAKED OUT. Our family is rarely on the good side of statistics. Lots of tears that day as I tried to wrap my head around another stinkin’ potential issue. I felt the bitterness creeping in as I told Jake “I just want to have a healthy baby like everyone else!”
The only way to get to the bottom of this was to either test the baby (very risky) or test Jake. So we sent Jake’s blood to a lab in Wisconsin and waited. This is such a rare thing that not many labs in the country have the ability to test for it, and it take 10-14 days to get the results.
For two very long and emotional weeks we tried to not think about the situation. We tried to hand it over to God and trust Him….GOODNESS that is hard to do! LOTS of prayers throughout the day as I caught myself focusing on the “what ifs”. After 13 days we got the call that Jake was Kell negative like me, so there is a zero percent chance that the baby is positive. My body will NOT attack the baby, and the antigen entered my system through a transfusion. I will always carry the antibodies and I will never get rid of the antigen but it will not hurt me in any way.
I am continuing with daily injections of blood thinner and everything is still progressing like it should. We will go in for another ultrasound on July 12th and we will hopefully find out the gender at that appointment. I have been incredibly nauseous with this pregnancy but over the last 48 hours it is starting to come and go instead of remaining constant!
That’s a wrap for medical updates. I hope this entry didn’t bore you to tears!
In my “spare” time I have been working to get Malachi set up to start school in the fall. This is a HUGE step for our family and I want to make sure that Jake and I are completely comfortable with the classroom he will be going into before the year begins. This week we have been speaking with the director of Special Education in our county to make sure they are ready to accommodate his needs. I also want to make sure that, as his advocate, I am getting him the help he needs in the classroom in the form of a one on one aide. It looks like they will be able to assign the nurse in the classroom to Malachi which will be helpful. But it will require some major training so they are able to understand his medical needs, particularly his seizures. I have started typing a Malachi handbook for her, but it is proving to be a bigger task than I expected!
The house project is moving right along. Our goal is to be in by the end of July, but I am not quite sure that we will meet that goal. Here is a picture of the back of the house so you can see some of the finished product:
The front of the house is still under major construction but should be visibly appealing by the end of the week. To give you some perspective, this picture was taken from the driveway and Malachi will be able to be wheeled directly up the concrete and into the front door. No steps or barriers! The entire first floor is handicap accessible and the basement area is for future growth/storage if needed. We will also have the ability to add a stair lift in the future. I can’t wait to give you all a virtual tour when it is finished!
I feel like I have exhausted my word count for this entry, but I want to leave you with something that has been challenging my thinking lately.
Luke 6:43-45 43 “No good tree bears bad fruit, nor does a bad tree bear good fruit.44 Each tree is recognized by its own fruit. People do not pick figs from thornbushes, or grapes from briers. 45 A good man brings good things out of the good stored up in his heart, and an evil man brings evil things out of the evil stored up in his heart. For the mouth speaks what the heart is full of.”
I have read this verse over and over again this week as I have processed the truth in it. I am particularly enamored by the final sentence “For the mouth speaks what the heart is full of.”
When it comes to Christianity, unfortunately you will always be able to find people who simply play the part. But we are known by our fruits. As I have thought about the concepts of fruits I have tried to envision mine, wondering if the fruit I am bearing is always a good representation of God. Do the words that come out of my mouth reveal that my heart if full of Christ?
To be honest, many times I fall short. Many times I catch myself speaking things and thinking things that do not glorify God. This verse has been such a great reminder to me this week that I am an imperfect person in need of a perfect God. My prayer this week is that God will allow my heart to be filled with the fruit of God’s Spirit. That my fruits in this world will be ones that honor the Lord.
I never quite know why God places certain things on my heart to share with you… I don’t know if any of you needed to read that verse this week! But I hope in some way it will encourage you in your walk with God.
Thank you for all of your prayers these past weeks. While we still covet your prayers, this week we are also thanking God for his protection over our newest little one.
Jake, Leah, and Malachi