Malachi has stayed sickness free for yet another week! We are so pleased with how well his immune system is functioning. This same time three years ago, Malachi was in the ICU battling pneumonia brought on by the flu. God has been so good to us!
This week we have tackled many enemies, losing some battles and winning others. Malachi has health insurance through Jake’s job and also qualified for state insurance as a secondary due to his low birth weight and gestation. I am sure you can imagine how expensive life with Malachi can get, and having a secondary insurance has been a blessing. Recently they have decided to re-evaluate everyone receiving state insurance and have given us some major hoops to jump through. We jumped through them, and they sent us some more. I spent a majority of my spare time this week working to fulfill all of their requests; we should find out soon if we will still be eligible to receive the secondary insurance.
Another battle we have been fighting and losing is in regards to Malachi’s reflux medication. Malachi has very severe GERD and his stomach produces incredible amounts of acid. In the course of his life we have unsuccessfully attempted to put him on 5 different medications to control the acid until we finally found one that did the trick! It slowly releases over the course of 24 hours and acts as a proton pump inhibitor which means it reduces the production of acid instead of simply treating it. Long term, we would love for him to not stay on this type of med as it can cause osteoporosis but for now we have to stick with what works.
Unfortunately this medication is very expensive. His insurance has decided that it is too expensive for them to continue covering and has required that we try less expensive medications before they will approve and pay for this one. So this week we started him on a different type of PPI, and it is not nearly as effective. Last night his tummy was so upset that he would only sleep 45 minutes to 1.5 hours at a time. We were up more than we were down throughout the night and I could literally smell the acid when he breathed. His seizures are also stomach related and discomfort tends to spark more of them.
Soap Box Rant: This whole concept frustrates me to no end. For some children it may be okay to change medications on a whim, but for a medically fragile child like Malachi this just seems like a cruel gesture. We pretty much have to allow him to be miserable and uncomfortable for a few weeks to “prove” to them he isn’t tolerating the new medication as well as the old. I wish so badly that when they make changes like these that they would be required to send a company rep to see what they are putting him through…he is just miserable.
We will give it a few more days and make sure it isn’t just a honeymoon period issue before we label it as a failure. Then the battle will re-kindle with me spending hours on the phone with doctors, nurses, and insurance trying to make a case to get Malachi the proper tummy relief that he needs. And the worst part is that next year at this time, his insurance will make the same demands and the cycle will begin yet again.
Alright- changing gears and steering clear from the negativity…
Tuesday was Valentine’s Day! Jake and I are not big holiday people, and February 14th is no exception haha. But the day does bring back some pretty fun memories; it was Valentine’s Day 14 years ago that I was supposed to go on a double date with a boy named Jake. My friend and I drove 30 minutes through the snow to a movie theater and waited in the lobby for our dates to arrive…and we waited…and waited. After waiting for over 30 minutes we were able to track them down via phone and found out that they were waiting on us in another movie theater across town. We laughed and decided that the date just wasn’t meant to happen that night and we would try again the following week. So February 14th marks our “almost first date” annivers
Malachi has cognitively been amazing! We are continuing to use the hemp oil with him and are seeing so many fun new things. His vision is improving and he has been so eager to try to look at things when we are out. Physically and verbally we are still continuing to see improvements as well. I had purposefully not mentioned the oil to his occupational therapist just to see if she would notice the changes, and this week at therapy she was RAVING about his open and relaxed hands. She was also thrilled with his eyesight improvements- he even tracked a few toys during his session which blew her away. I explained about the hemp oil and she was just astounded saying that he needed to be a poster child for it!
Lately Malachi has been getting bored, which is a wonderful improvement. It is so encouraging to see him so eagerly want to engage with his world. I do the best that I can, but can’t one on one interact with him at all times. We have been trying to figure out ways to get his toys within reach….we have even started hanging beads from cabinet handles so he has something to play with in the kitchens and bathrooms. He was playing so well this week with his alphabet wheel so I grabbed my phone to take a video for you:
I wish I could catch all of his verbal improvements on film to share with you. This week I started to prompt him to say “Up” in the mornings when he wants to get out of the bed (he usually ends up in the big bed with me before the sun rises). On the third day he said it clear as day all by himself. It was like music to my ears!
But the most exciting moment of the week happened around 6am yesterday morning when Malachi woke up in his crib and yelled “Daaaddddddd.” Jake and I both sat up and looked at each other, completely baffled and wonderfully surprised that he had spoken his wants so clearly and without prompting! And of course we always follow through when he asks for something so specific which meant Jake had to run in there and get him…which was absolutely fine with me after our extra long night together of battling reflux.
This boy sure does love his daddy.
Jake and I are doing a study on Wednesday nights with our youth group on the major and minor prophets. In the book of Micah, there is a reference to God hiding his face from the people immersed and comfortable in a sinful life. That phrase has continued to stick with me throughout the week.
In Numbers 6, God is talking to Moses and he tells him to instruct Aaron to bless the Israelites with this blessing (verses 24-26):
“The Lord bless you and keep you, the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace.”
I have been reflecting on our lives and how incredibly blessed we are- and how incredibly undeserving we are of those blessings. Jake and I are not above average Christians. We have spiritual highs as well as spiritual lows. There are times when the presence of God is felt almost every hour of my day and there are times when I feel a million miles away from where I need to be.
But when I look at our life, and particularly Malachi, I see a radiant glow that can only be a reflection from the face of God. God has chosen to turn his face towards the Carroll family. That alone is worthy of acknowledgement and praise. As the blessing above states, the Lord is blessing us, keeping us, shining his face on us, being gracious to us, turning his face towards us, and above all giving us peace.
The special thing about God is that He is continually seeking and desiring a relationship with us. Like we read in the parable of the lost sheep, he is willing and eager to pursue us…even when we stray from where we are supposed to be. He is seeking us out. It brings him joy to turn his face towards us, and allows us the opportunity to experience his perfect peace.
My prayer is that we all can find the ways in which God is engulfing us with the light from his glorious face. I pray that the warmth and comfort that a relationship with God can bring is something that we continue to crave and long for.
So with that being said…
May The Lord bless you and keep you, the Lord make his face shine on you and be gracious to you; the Lord turn his face toward you and give you peace.
Jake, Leah and Malachi