Malachi has had a great week and had a new “first”…for the first time ever he was able to avoid getting a nasty cold that I had come down with! This is so huge in Malachi land as we literally sleep face to face at some point throughout the evening/morning hours. I think his little immune system is getting stronger.
We had some pretty big appointments this week that kept us busy. Malachi had a checkup with the Gastroenterologist (GI) and he seemed pleased at his weight gain. Malachi’s goal based on his size and age is to take in about 720 calories a day, but children with CP can burn more calories than normal with their muscles contractures. These days he is taking between 740-760 calories each day and gained 2.5 pounds over the last three months bringing him to 29 pounds. He is still small for his age, but his BMI (body mass index) is at 70% which satisfies the doc.
Personally speaking, Jake and I don’t focus on numbers with Malachi. Instead we focus on how he looks and acts, and we are confident that he is getting appropriate nutrition right now. Honestly, I am not eager to fatten him up much at this stage anyway as I am reaching a point in my pregnancy in which it is harder to lift and care for him.
Malachi also got his new AFO boots this week! That also means we went by the New Balance shoe store and bought him a new pair of shoes to go over the boots. They are the only local company that makes extra wide shoes that can fit over his braces, and he has to have hard soled shoes for his weight bearing in his stander.
Malachi had Monday off from school for Labor Day but was so excited to go back on Tuesday. Wednesday and Thursday there was some sickness floating around the classroom so we made the decision to keep him home both days. We purposefully set his school time to be 10-1 so they can identify any sickness issues in the morning and let us know before we bring him.
But let me tell you…this boy LOVES going to school! We are seeing some major behavior changes in him over the last few weeks. For example, he loves the attention he gets at school. People are there to talk to him and give him undivided attention, which he absolutely craves. So now when he is at home he will find ways to “get into trouble” to keep our attention focused on him at all times. He used to simply be mischievous, but now he is full fledged ornery. We now have to keep him occupied with a steady stream of different toys to keep his mind engaged!
As much as we love seeing him do normal 4-year old attention seeking things, he is becoming a little dangerous to himself so we have to correct him way more than we used to. This usually leads to hurt feelings and lots of hugs haha. Jake has been trying to be stern with Malachi but can’t handle it for more than about 5 seconds…he is such a softy. Here is an example of one of his new favorite attention seeking schemes:
But one of the major positive changes we are seeing is in Malachi’s desire to sit up tall in his equipment! He is starting to realize that he can see things straight ahead when he sits up and doesn’t need to crane his neck to the side. We are able to incline his chair more and more each day, which is such great progress. I took a picture at lunch today because he was sitting up like such a big boy, and you can also see the improvement in eye contact at mid-line. He is not smiling, but it is because we had a long night and he was ready for a nap:
School is also turning Malachi into a social butterfly. Everywhere we go now, he is looking for people to interact with him and is using his words more. Overall, we are very happy with the changes we are seeing in him.
This week Malachi stayed for just over 2.5 hours each day! Every morning that he goes to school he and I talk about how “mommy is going to go bye bye but she will come back!” He is slowly but surely getting the concept figured out.
Baby Levi is doing great! I have some slight nerve damage issues in my hand from where they placed the IV from the crazy hornet situation but it is slowly improving. Caring for Malachi is continuing to get more difficult the larger I get, and I need everything else in my body to cooperate! The loss of function in one hand has been hard to adjust to. But praise God for 26 weeks…only 10 more to go.
The more time I spend in prayer over Levi the more excited I get about his future. We can never predict what path God will take our children on- Jake and I know that more than most. But there is something so exciting and wonderful about the unknown ways that God is going to work through him.
This week I have been thinking and praying specifically about Levi’s future faith. I have found myself wondering how much having a brother like Malachi will draw him closer to God. I also think about the character that he will develop having to learn selfless love at such a young age. He is going to have to learn that his world must revolve around someone else’s needs, and this is a tough lesson for a little boy. But the character that it will produce is going to be something special.
I also think about the future conversations Levi and I will have about his brother. About why God hasn’t healed him, or why he was born this way. I think about the prayers little Levi will lift up to God asking him to make his brother walk. And I think about the hard lessons Levi will have to learn about the mysterious ways of God.
Isaiah 55:8-9 “For My thoughts are not your thoughts, nor are your ways My ways,” declares the Lord. “For as the heavens are higher than the earth, so are My ways higher than your ways and My thoughts than your thoughts.
What a parental challenge we have headed our way, but one we are glad to take on. In my prayers I find myself asking for wisdom to know how to answer the tough questions that will come my way.
But oh, how Malachi is going to love his baby brother.
Please continue to pray over our family this week. Pray that Levi continues to grow, problem free and as full term as possible. Pray over our family unit as we struggle through the limitations pregnancy puts on our routines. Also pray that I am able to protect my mind from the attacks of the devil. Lately I have found myself focusing on something called SUDEP (Sudden Unexpected Death of Epileptic Patients). Sadly there have been several cases this month in our support groups involving children close to Malachi’s age and the fear has been crippling. I love him so much- imagining life without my Malachi is something I can’t (and shouldn’t) do.
And for anyone who may be concerned, please be assured that we are on the outskirts of the incoming hurricane weather and it looks as if we will only be getting some major rain over the next few days. It will delay move in day for us a bit, but that is pretty low on the concern list right now in the grand scheme of things.
Thank you for checking in with our little family!
Jake, Leah, Malachi, and Levi