Here in southeast Tennessee we have been pounded with an incredible amount of rain. Downpours and the wheelchair life don’t mix well; on the plus side Jake’s school was closed 3.5 days and having him home to help was a blessing.
Levi is turning into quite the mischievous child and while he isn’t crawling yet he is successfully rolling anywhere he wants to go. The result is a mess of wires that we are continually untangling but we are so thankful for his mobility!
He is also mastering the art of dumping out every bin he can get his hands on, and with such pride I might add.
Malachi and Levi have been playing a lot together and are oddly good at sharing. My favorite is when Levi takes Malachi’s hand and helps him activate the toys. Levi is calling “Chi Chi” by name a lot lately.
Jake and I have been working hard this week to get into a groove with Malachi’s feeding tube. Malachi is so intelligent so we try to give him a say with things that are in his control. We have been asking him if he would like his bottle in his mouth or in his tummy tube. 9 times out of 10 he will sign that he wants it in his mouth, but every now and then he votes tube! That is a big step. We ordered some special tube dressings that have superheroes on them so each morning he gets to decide which superhero to wear. That has also helped change his attitude towards the tube a bit.
Right now we are doing two tube feeds a day and two by mouth. We are trying to pack on some pounds so the tube feeds are a high calorie formula instead of his almond milk smoothies.
Malachi has been rocking his therapy sessions lately, especially his horse therapy. He has been using both his words and his signs to get the horse to go and very interactive. We are seeing an increase in seizures this week but he is still more cognitively clear on the CBD medication.
Look at this sweet photo of Malachi from 4 years ago. I just love his precious heart.
The boys had a fun surprise play date on Friday with a litter of puppies!
We have been blessed with the opportunity to get to know a wonderful local family through a soccer league we run at the church. They invited our family over for dinner and puppy play time and the boys were thrilled!
We knew Malachi would be full of giggles but we weren’t quite sure how Levi would react. He surprised us with his curiosity and boldness.
Our friends are originally from Columbia and prepared a delicious dinner for our family, full of unique foods that were new to us. It was such a wonderful night with good, godly company.
I know I left you all on a cliffhanger last week with our unexpected blessing moment. The more I process the blessing the more it is blowing me away so here we go…
Repeatedly through this journey we have watched God meet needs we didn’t even know we would have. Then a few weeks or months later we see the reason why and recognize the ways that God protected us from discomfort for our family. God truly meets all of our needs.
We have also watched God go above and beyond what we could ever imagine. As I mentioned last week, around Christmastime we were at a restaurant and were approached by a local couple. They said that God laid it on their hearts to help our family and that they owned a construction business. He said to stop by his office to discuss what needs we have and last week we were able to meet up with them! I am purposefully not going to give any identifying information about these beautiful souls in order to respect their anonymity.
As I said before, God has overwhelmed us in the many ways He meets our needs. We get a lot of questions from close friends and family about our financial needs, so I am assuming many of you also have those questions. Having medically complex children can get extremely expensive, especially with the 22 surgeries we had last year between the boys, not to mention Levi’s 131 day ICU stay! Each week the boys have 5 therapy sessions, averaging about $150 each. Then add on any specialist appointments, testing, or hospital stays. You wouldn’t believe the amount of medical bills these boys accrue. It literally takes my breath away.
Needless to say, we are very thankful for Jake’s private insurance through his job! The boys each have a diagnosis (called a “presumptive disability”…based on their HIE brain damage diagnosis the state assumes they will be disabled for life) that automatically qualifies them for secondary state insurance. So each of their medical bills cycles through a primary and a secondary insurance before it makes its way to our mailbox.
Just like most of you, we have deductibles and out of pocket maximums to meet, but with this motley crew we typically hit those within two weeks of the new year. My record is January 2nd haha. So we take a hit at the beginning of the year, then coast relatively calmly through the remaining 11 months.
There are lots of pop-up costs that come up…things that insurance won’t cover. For example, they see a bath chair for Malachi as a “comfort item” and say it is not medically necessary. They cost around $4,000 each. A ceiling track system for the future runs about $25,000 and is not typically covered. His wheelchair stroller new costs $6,000 (we thankfully found a used one)! I apply for lots and lots of grants to help with these extra items and costs.
After our initial encounter with this generous couple, Jake and I prayed and thought long and hard about any needs we have. With us already being into late February we are in a stable, predictable place as far as bills go, making the hopeful prediction that there will be no major medical surprises on the horizon.
One of the things that Jake and I have had on our hearts since this summer is a therapy pool for Malachi. His physical therapist has one and allowed him to do swimming therapy in it this summer. Malachi has always loved the pool but seeing his tightness go away after 30 minutes in the warm water was amazing to see. The heated water is so therapeutic for his body, not to mention the brief independence it gives him. These pools are about 4 feet deep giving his body enough room to vertically float.
Just watch this sweet video of Malachi during a swimming therapy session this past summer.
So fast forward to last week’s meeting. Jake and I have saved enough money to buy Malachi’s therapy pool, but have been trying to figure out a way to make it accessible for him. It is going to require some poured concrete to extend it off the porch. Since this couple runs a construction company we instantly thought WOW- that God was up to His mysterious ways again!! You also need to know that Jake and I are very VERY hesitant to ask people for help. We would never want to inconvenience or take advantage of anyone’s generosity.
We explained the situation and asked if they would be able to help coordinate making an accessible spot for the pool to go.
Strap on your seat belts and listen to what happened next….
We went through pictures of the house and different places it could go and remain accessible. The man stated “I know exactly where to put it.” He then explained that he would like to knock out a wall in Malachi’s bathroom and build on an addition to our home to put in an indoor pool for Malachi. He wants it to be hooked to the central air and heat so it can be used year round and is making plans to make it 100% accessible for him.
I get chills and teary eyed just typing that. The Holy Spirit prompted this complete stranger to help our family in a way that is above and beyond anything we ever imagined! I felt the Holy Spirit in the room as the plan unrolled off this man’s lips.
Our faith is not based on these unexpected blessings, but oh how these hugs from God serve as beautiful reminders that He holds our family in the palm of His hands. Thank you Lord for continually meeting our needs and bringing such big blessings into our path, even when we don’t deserve them.
1 Corinthians 2:9 says “What no eye has seen, no ear has hear, and no human heart has conceived- God has prepared these things for those who love Him.”
While this scripture is likely hinting towards our future in Heaven, it has served once again as a reminder to me this week to not try to put walls around what I think God can do. He is omnipotent (all powerful) and omniscient (all knowing) and His wisdom is beyond anything we can imagine.
I am so thankful that God is going before me in this challenging walk. He prepares the ground we are about to walk on, and for that I am so grateful.
I have some other devotional thoughts but I am out of steam! I will save them for next week’s entry.
My prayer for you all this week is that you clearly see the hand of God in your life. I pray that He moves in his mysterious ways in your life too, and that your faith grows as you watch Him work.