I wish I could wear a camera all day and share the many sweet brother moments we have each day. While Levi can be a wild man towards Malachi, he is often very sweet and loves to be close to him at all times. We got this bath chair with some grant money last year so the boys could share the tub. Levi isn’t quite ready for a big boy bath yet so we set the chair up in the living room. They both love being so close and accessible to one another.
Levi is starting to say Malachi’s name (he calls him Chi Chi) and hearing it is so beautiful. I happened to catch it on film for Jake and thought you would like to hear it too!
Our crew had a typical week, racing from one appointment to the next and praying for God to get us through the next 24 hours. That may sound dramatic, but that is our reality! Our life and energy level defies logic so we lean heavily on strength from God.
This handsome six year old lost another tooth this week! This one didn’t get swallowed so he got to put it under his pillow and get some more chocolate.
The beginning of the year is always a dicey time for special needs mom as we start over with deductibles and out of pocket maximums. Navigating the bills is quite a job and requires a lot of phone calls and double/triple checking…did they file through primary AND secondary? Should I appeal something they are saying isn’t covered? Last year we broke our record and hit our deductible by January 1st!
So much of insurance is playing the game and learning the ropes. For example, I have to order g-tube and oxygen supplies for the kids every month. Some things, like a specific tape, I don’t necessarily need every month. But if I don’t order it for 3 months they remove it from the list of available items and to get it again requires a doctor prescription (which equals about 3 phone calls for me). So I have a list of things I add to the regular items to make sure they stay current on our list.
Malachi’s wheelchair is also up for replacement. The average “life” of a wheelchair is 3-5 years and we got his just over three years ago. We met with the Durable Medical Equipment provider (DME) this week to talk about options. They looked at his current chair and said that it was still the most appropriate chair style for Malachi. The frame looks solid enough and there is still enough room for growth so it doesn’t need to be fully replaced. We talked about my concerns with his positioning, especially his head and hips so we have a few minor modifications we are going to try to make to it.
It is in these meetings that I get unintentional snapshots of the future for Malachi. The DME was explaining the importance of good posturing and what we can expect later in life if we continue to choose Malachi’s comfort now over his body in the future. As we have explained to you many times, we always strive to give Malachi a full, happy, and comfortable life. Unfortunately that goal may be setting him up for more pain in the future as his body does what it wants to do right now. We could be more aggressive about posturing him, but I am just so worried we will be causing pain for him in the present, AS WELL as the future. The decisions we have to make can be overwhelming.
We have been trying to utilize Malachi’s g-tube more. For those of you that are not familiar with feeding tubes I will try to explain this a bit. Malachi and Levi both have the same type of g-tube, called a Mic-Key button, but we use them very differently. Here is a visual of the button.
Levi is on what we call “continuous feeds”. He is hooked to a bag and a pump that feeds him in small amounts for 18 hours a day. We carry a small feeding backpack around at all times and inside of it is a bag of formula, ice packs, and a feeding pump that is programmed for a certain rate. We leave the extension (the tube that plugs into the button in his stomach) on at all times because it is used so frequently. We tape it onto his belly because he pulls at the tubing all the time. You will see this white tube coming out of the bottom of his onesie in nearly all the pictures I post. One of my biggest fears is him ripping the whole mechanism out of his belly so the tape gives me a little peace of mind as I can hear it rip off his skin when he is in wild man mode and get to him before he does more damage. If the tube gets pulled out undetected (like during their sleep) for more than 4 hours, they have to surgically put it back in.
Malachi has not tolerated pump feeds well but is adjusting to “bolus feeds”. This means that once or twice a day, particularly when we are on the road for appointments, I pull over and feed him through the tube which takes about 5-8 minutes for 6 ounces. I hook an extension tube into the button and put a giant syringe on the end. I fill that syringe up with formula and hold it up so gravity can take it into his tummy. Once the feed is done we unhook the extension leaving just a penny sized button on his tummy. I took this picture of a bolus feed in a Taco Bell parking lot this week to give you a visual haha.
We were hoping having a g-tube would help with seizure management for Malachi, as the majority of his are triggered by intestinal discomfort, but unfortunately it has not made a difference. He still has the same amount of burps whether we feed him like normal or through his tube.
Changing gears here…
I have been absolutely BLOWN AWAY by God this week. There is a verse in the Bible (Ephesians 3:20) that says “Now to Him who is able to do immeasurably more than all we ask or imagine, to Him be the glory…”
A few months ago Jake and I had an encounter with a stranger at a restaurant. He walked over and said that God laid it on his heart to help our family. He gave us his contact information and told us to track him down over the next few weeks and walked away.
Jake and I weren’t quite sure what the man meant, but over the last few months I have been trying to set up a meeting with this very busy man. On Tuesday afternoon I finally got the chance to sit down with him and talk. I don’t want to go into details yet until things are actually progressing, but I want to tell you that I watched as God brought that Ephesians 3:20 verse to life right before my eyes. He used this very generous man to show me that sometimes God’s plans are sometimes so much bigger than anything we could ever ask or imagine! To God be the glory.
Time and time again we have watched God meet our needs before we even knew what they were. There is not a doubt in my mind that God is holding my family in the palm of His hand…and the undeserved blessings that He continues to send our way leave us speechless. I was literally speechless as I left this man’s office on Tuesday; and the presence of God was so undeniably evident in this situation. It brought Jake and I to tears.
It is through these unforeseen blessings that I hear God say “Leah, I see you. Your struggles, trials, and tears are never hidden from my view. And through it all remember that I chose you for this life, and I will equip you for the task. Just have faith that my ways are beautifully mysterious and trust that I will continue to care for you in this calling.”
I can’t wait to share more about this unexpected blessing with you all over the next few weeks. I know I just presented you with a movie trailer and left you hanging, but I promise more info to come when the timing is right! It will BLOW YOUR MIND and is such a testimony.
Please pray a hedge of protection around the boys as I am starting to develop signs of a cold. If the discomfort I am experiencing from it hits either of the boys then we are in for a long and miserable week. Help us pray the germs away!