Wow what a week this has been! Challenging yet amazing in so many ways!
Let’s start with Malachi updates. Malachi has had a quirky week with his health and we are not quite on top of it all yet. On Tuesday we went to a soccer game and noticed he was getting a little warm. The temperature was mid 80s, which isn’t too crazy for around here, and usually he manages just fine but that evening he woke up with a temp of 103. He didn’t have any other signs or symptoms of being sick so we figured it was just one of those quirky brain things. The hypothalamus in the brain controls temperature regulation and we know that part of Malachi’s brain is very damaged.
So we started the routine of trying to slowly lower his temperature with removing clothes, turning on ceiling fans, etc. and within a few hours his temp was dropped close to normal. But in true Malachi fashion it continued to drop and went down to the low 96 range. We have been battling this for several days and he is still running a little colder than his normal so we are watching him like a hawk.
Yesterday morning he woke up with an added symptom of not being able to breath through his nose. There are no other signs of sickness aside from his mouth breathing, and let me tell you- he sounds TERRIBLE!! He sounds like a mix between a dragon and a gremlin, enough to turn heads wherever we go. But I am still not convinced that he is sick! I am thinking it is simply allergies so we are giving him Claritin and watching him closely for it to progress into something else.
Poor little Malachi doesn’t understand why he can’t breath normal and last night he kept waking in a panic, which is so hard to watch. I am keeping him close to me at night so I can monitor him and comfort him when he gets scared. He is sleeping a few minutes every hour which has been very challenging for this pregnant momma who needs that physical (and mental) break that night sleep provides. So please pray with me that his little nostrils open up and he starts breathing normally again.
Malachi had a visit with the neurosurgeon this week and everything checked out great with his shunt. We are hoping to be moved to an annual visit instead of bi-annually, which he promised us he would do next time. The appointments go like this:
-We wake up at 6:00 in order to get on the road and to the hospital by 8:00. Malachi stayed up most of the night and literally cried and pouted when I woke him up to leave (as did his momma haha).
-We drive over an hour in rush hour traffic to the hospital
-We search for over 20 mintues for a parking spot. Handicap spots at the hospital are few and far between, so we usually end up on the third floor of the parking garage and have to take several slow elevators to get to the main entrance.
-We check in at the registration desk, along with at least a dozen other people there for various surgeries, procedures, appointments and we wait (typically about 20 minutes)
-We register and sign insurance paperwork then go to our actual appointment where we sign in and start the second waiting process
-Malachi goes in for triage (temp, weight, blood pressure, etc) then we are taken to an exam room where we start the third waiting process
-The doctor comes in to see Malachi. The appointment lasts under two minutes total. He asks “Any new issues or concerns?” I reply “nope”. He feels his shunt and says “Okay, we will see you in 6 months.”
We are very grateful that his shunt has remained problem free and our appointments are so simple! And I understand the surgeon’s desire to keep a close eye on each patient, but I wish I could convince them that I am trustworthy enough to not need the routine 6 month check-up, especially during pregnancy!
He still loves looking out the car window, especially when Grover is with him haha. The semi trucks are now more fascinating than terrifying.
From the hospital we headed to get Malachi’s AFO braces adjusted. They were just a little too tight in the ankle area and needed to be heated up and remolded a bit. The man that works on his braces is extremely accommodating and worked us into his busy schedule to keep us from making another trip to Chattanooga.
Malachi missed several days of school this week due to his temperature issues and appointments, but the days he did go he did excellent. In fact, we were able to bump him up to four hours a day and he seemed to like it much better. I took his activity chair over since we were moving it out of the house anyway and the classroom teachers have been letting him spend some time in it each day- he has been “over” his wheelchair at school as he wants to sit up like the big kids.
His teacher sent me this picture of Malachi painting! You can see his temperature struggles in his color and around his eyes.
He also had his first school vomit and they handled it like champs getting him up and leaned forward quickly. I love how willing they have been to learn Malachi.
A quick Levi update: We are at 29 weeks and things look great. We met with the high risk team this week and got to see him via ultrasound. He is measuring 2 pounds 10 ounces (Malachi was born at 1 pound 12 ounces) and everything is on target for growth. We will go back in three weeks then be put on weekly appointments with them.
The biggest update from the week: WE HAVE MOVED!! I can’t even put into words how much this new home is already changing our lives. That sounds so dramatic, but I am not over-exaggerating in any way. The ease of simply getting Malachi in and out of the house has been a game changer for me and the entire environment is so easy to take care of him in. Malachi absolutely loves it here and has settled in nicely.
One of the biggest noteworthy things has been in Malachi’s vision in the new house. We put in big windows with lots of natural light and he is able to see so well. I took some pictures this week- take a look at that eye contact!
As you can see, the house is not 100% done, but we were very eager to get moved in. Hopefully we will be able to finish it all up this week.
We were SO BLESSED to have more than 20 of our friends and family join us early Saturday morning to help move our things. They took charge and even set up our beds, sheets and all, so we would have a place to sleep that night. Everyone pitched in, young and old, and we had the rental emptied by lunch. Our new neighbors brought a crock pot of soup by for dinner and Jake and I crashed.
Malachi has thoroughly enjoyed the transition process and has been cracking us up with his excitement. The highlight of his day today was going to get Boomer dog and bring him to the new house. Malachi was giddy with anticipation and the two have been side by side since.
So yes, a whirlwind week for sure…especially on the emotions. But there is something so surreal and satisfying about being in the new home. I can’t even explain how much joy it has brought my soul to finally breathe a sigh of relief as I look around at the ways in which Malachi’s future will change because of this home. Such a level of independence for him.
We are so incredibly blessed and can’t help but see the hand of God in all of this.
We are going to be spending the next week (well, realistically speaking I should say months) unpacking boxes and finding a new routine.
My thoughts this week keep floating to little Levi and the wonderful chaos that he will add to our family. I firmly believe that God has prepared a life for him that is so wonderful and I get so excited thinking about the mighty ways in which God will use him.
I also can’t help but dream about all of the changes we will get to see in little Malachi as he tries to mimic his little brother. What a fun adventure we are about to embark on as a family of four.
Please continue to pray for God’s timing in my pregnancy. We always dance on that line of wanting Levi to stay in as long as possible, but also wanting to be 100% certain we aren’t jeopardizing his health and safety in any way. Pray that Malachi’s health stabilizes and he is able to breath and function normally. And join us this week in thanking God for the many blessings He has given to the Carroll family!
Jake, Leah, Malachi, Levi, and Boomer dog