This week was an exciting one and I can’t wait to share it with you!
First of all, let’s unveil the new and improved wheelchair…for memory sake, here is a photo of his chair pre-repair. Notice the “long sit” with his legs straight out. His little knees just wouldn’t comfortably bend.
And here we go…dum dum duuuuuuhhhhhh…..the new and improved chair:
Look at those knees bent to 90 degrees! What a difference! Malachi is sitting so much better in his newly adjusted chair. He sits a little higher, which he really likes and while we can’t quite explain it, he just seems happier and more comfortable in it. We are absolutely thrilled.
Malachi and I were guest speakers on Wednesday night for the little girls class at my church. They were so respectful as they listened to me explain Malachi’s brain, how it differs from ours, and how it has a hard time telling Malachi’s body what to do. We talked about the word “retarded” and how using that word towards situations or friends can be hurtful.
They asked a lot of questions, which I was very glad to answer. I think it is so important to be transparent about Malachi and his needs, but also help them understand that even though he may look and act different he is still very much a 4 year old boy who wants to have friends. After they asked their questions I had them come talk to Malachi and here is a video of the sweet encounter:
Malachi is such a sweet little spirit. In a 24 hour span he can bring out literally every emotion from within me…joy, happiness, sadness, anger, and so many more. At night the first time he gets up I find myself simply snuggling him and thanking God for him. Round two for the night usually morphs into a tough love and by round five and six I am just so angry that his system won’t calm down enough to let his body rest.
But we can’t ignore the blessing we have been given. This picture was taken four years ago when he was under 3 pounds. From the top of his head to his booty was just 10 inches.
Malachi’s communication continues to change on a monthly basis. He used to be able to say several words when prompted, and we seem to have lost some of those. But he will always make an effort when asked. We would love to be able to get him on a communication system of some sort, like an eye gaze system but we still have a ways to go before he is ready. We have been working hard on his “people skills”, trying to teach him to talk to people when they talk to him and try to look at them with his eyes. I took a video this week to show you how well he is doing at his eye gaze prompts:
And here is another video that shows him working on his verbal communication:
Malachi has been very interactive lately and has been playing so well with his switch toys. He loves that he is in charge of making them “go”; I really feel like he is going through a phase where he wants to be independent. His receptive language is continuing to also improve and this week he was almost giddy when I told him we were going to the grocery store where we would get him a balloon.
We had a little incident in the bath tub today that I thought you would get a kick out of. The shower/tub combo in our rental house has a “switch” that you push up to route the water through the shower-head as opposed to the bath spigot. I got Malachi all situated in his bath chair and flipped on the water only to find that Jake had forgotten to flip the switch back to spigot mode after his shower. Before I realized what had happened, COLD water was spewing from the shower DIRECTLY onto Malachi’s face. Now this boy will panic when I wipe his face with a washcloth, let alone splash it was a handful of water.
Malachi tried to “hedgehog” as we call it and fold his body into a ball, which clearly didn’t work like he wanted. I scrambled and got the water turned off and looked down at him…he was wide eyed and looked at me like I tried to waterboard him in a torture chamber. He was gasping for air and I felt TERRIBLE, but instead of showing it I just laughed and pretended like it was a game. His face slowly changed into a smile and as far as he knows that was a “really fun (and slightly scary) new game mommy played with him”. I don’t think we will plan to play that game again anytime soon haha!
We made some major progress on the house this week and we officially have a basement! Here is a picture of the crane lowering down our basement walls.
The three of us have spent a considerable amount of time at the property this week, just enjoying the changes that are taking place. We are getting so excited about the near future, but are also cautiously trying not to get too excited as we know it will lead to impatience.
This coming week will be an odd one as all of Malachi’s therapies have been canceled for spring break. Jake won’t be on his spring break until next week, so our routine is relatively the same but minus the daily appointments we are accustomed to going to. It is like getting time off work unexpectedly and I catch myself daydreaming about all the ways we will be spending our extra few hours each day!
We could use some prayers this week specifically regarding Malachi’s sleep. I don’t know if he was battling a tummy bug this week or just ate something unsettling but he has been back in his “sleep for 1.5 hours and stay awake for 2” mode and it is taking its toll on us both. My patience level is lower than it should be and weeks like these tend to suck the energy and joy out of our day.
Another request that I would like to add is regarding Malachi’s feedings. He has been so incredibly interested in table foods lately and I just don’t know how to go about giving him the nutrition and calories he needs while also taking the time to teach him to eat. I need some wisdom and guidance from God on keeping Malachi in a healthy place with his eating and weight.
But thank God for good health and no new surgery needs. Malachi has always had to have a major surgery in March (usually scheduled to accommodate spring breaks) and this is the first year without one! We have been so blessed beyond measure.
Thank you for loving our son. And thank you for the silent support so many of you give to Jake and I as parents. We love and appreciate you.
Jake, Leah, and Malachi
2 thoughts on “Knees and Basements”
Hi Leah- my name is Jessica Harris and I am a Registered Dietitian. Peds is not my specialty, but I would be happy to chat with you about working on Malachi’s nutrition if you would like some thoughts! My email address is firstname.lastname@example.org
Thank you Jessica!! I will definitely send you an email!