Let’s start with some major positives from our week!
Malachi is learning how to swim- and he is really good at it! This is completely fascinating on so many levels. First of all, let’s take a look at the facts…in order for Malachi to use his hands in a purposeful manner much of his other abilities have to suffer, like his head and trunk control. So if we want him to play with a toy, we have to be okay with him dangling his head so he can muster his energy to swing his arm at the toy. Even then, Malachi’s movements with his hands and arms are often wild and sporadic.
The second thing that needs to be mentioned is that Malachi requires support in literally all aspects of his life. He has a special mattress that keeps him in a good position while he sleeps and his wheelchair is extremely customized to allow him to sit independently. But most of his day is spent within arm’s reach of Jake and I for safety reasons, and I would venture to say that 70% of his day is spent in our arms.
Last week we were very encouraged to see Malachi tolerating his new therapy neck ring in the swimming pool. He was very content simply floating on his back and splashing around. But I am so excited to tell you that this week Malachi officially mastered his new device! Let me just put a video here that will explain a bit more…
WOW!!! And yes, I cried.
And this was all achieved simply by us telling Malachi to use his arms. There is so much intelligence trapped inside that body!
So here are some more facts about Malachi’s new hobby. He only likes to swim to his dad, which is so sweet to me. Jake will push him off in my direction, and he would use his little arms to swing his body around and beeline back to Jake…all while yelling “DADDDD”. His face when he is swimming is so precious to watch as it has a mix of determination and sheer excitement written all over it.
He is learning how to flip from his belly to his back in the pool and has surprised us each time we have taken him with advancing his abilities. The video above was taken the third time he used the ring, so you can imagine how much he has improved since then! His speed is truly amazing.
We are also thrilled by the things swimming does for his tight body. Malachi is tolerating well over an hour straight in the pool and after swimming he is able to bend his knees for a few hours. We are able to stretch him very well in the pool, and are noticing improvements in his range of motion. Needless to say, we invested in a small inflatable pool for the backyard so we can add pool therapy to his daily routine.
It is moments like these that bring a much needed wave of excitement into our family. These moments serve as a reminder of the potential that Malachi has and push me as his mom to find new ways to bring out these hidden abilities. If you would have told me last summer that my Malachi would be swimming all by himself this summer I would have seriously doubted you. But look what God can do in just one year!
Malachi also had some adventure this week as he went to the local “jump park” with his cousin. If you aren’t familiar with places like these, picture a giant warehouse full of trampolines. We strapped Malachi in a baby carrier on Jake and off they went, bouncing and having a blast! I recorded a video so we could share his silly joy with you.
Jake and I took the kids from our youth group to the bowling alley this week, and of course Malachi wanted in on the fun! He managed to bowl a strike and a few spares, beating some of the high school boys. He is getting a little impatient at waiting for his turn while bowling, but then again, don’t most three year olds?
Malachi has been impressing us lately with his vocalizations and every now and then will repeat a sentence perfectly. When this happens, you would think Jake and I were crazy by the amount of rejoicing that goes on. Last night was one of these moments, as Malachi was wide awake and ready to play at 4am. I got up with Malachi and Jake came out a few minutes later to make sure we were okay. I answered: “We’re doing fine! Malachi say ‘Goodnight Dad’!” And Malachi spoke it as clear as day ” ‘Night Dad!” with a big grin on his face. It is in those moments that I have to choke down tears and celebrate ecstatically!
Tomorrow is the big day for Malachi’s mouth procedure, and I have spent the last 3 hours trying to find things to do that will allow me to procrastinate preparing for the dreaded day just a little bit longer. Jake and I have a love/hate relationship with procedures but it tends to be more heavy in the “hate” category. We fully understand that these surgeries have to happen to keep Malachi happy and healthy, but like all parents, we hate to witness Malachi suffering in pain. And handing him off to strangers is a horrible experience.
There is also some slight PTSD for me when we are back in the medical environment, relying on monitors and oxygen to keep Malachi stable. Even the all too known beeps and buzzes from the machines spark some rough memories from Malachi’s’ NICU days, and Jake and I are usually a bundle of nerves until we pull out of the parking garage and head back towards home!
We will check in tomorrow morning at 6:15 and Malachi will be the first procedure of the day for his surgeon. We will find out the details in the morning about the length of the surgery, and it is all very much dependent on what they find when they start working on his teeth. We know for sure that they will be cutting the gums around his molars, drilling out the decay, and covering them with silver crowns. They will also be looking at the other teeth that are left and possibly be repeating the process with them as well. The dentist explained that the pain will be very similar to them pulling the teeth, and the last time we had to go that route was a nightmare.
As of now, we are not scheduled to stay the night! The only thing that will change that is Malachi’s ability to start breathing normally again after surgery. We always have a bag packed just in case, but we are really hoping and praying that it will not be needed.
Obviously tomorrow’s surgery has been in the forefront of my prayers this week, and I have spent many moments simply struggling for the right words to say. My prayer for him this week has been the same as my prayers before his other big surgeries…that God will send his angels to comfort Malachi when his mommy and daddy can’t, and that God will continue to use Malachi’s life to open our eyes to the mysterious ways of the Father. I don’t have an explanation as to why God made Malachi the way that he did- and truthfully I don’t desire to know the answer to that question anymore…why question such a good and perfect gift from God? But through Malachi’s journey I have been able to catch glimpses of a loving God who has a wonderful plan for Malachi’s life. May the angels sing to him as he sleeps tomorrow and cause him to wake with that sweet smile on his face….silver caps and all.
Please keep Malachi in your prayers this week. Discomfort is a huge trigger for his epilepsy so keeping his pain under control this week will be so important. We also have to worry about dehydration if he is not tolerating his bottle feeds well, and dehydration leads to constipation, which is his other major trigger for seizures. While Jake and I worry about the procedure, we typically are more concerned about the recovery process so we are asking for prayers throughout this week.
Thank you for checking in on our little fighter and for choosing to be a part of Malachi’s journey.
Jake, Leah, and Malachi