This has been a very special needs week.
We tackled lots and lots of phone calls, and have officially scheduled Levi’s Cincinnati week. He has to meet with surgeons prior to surgery day and they try really hard to get these appointments as condensed as possible to avoid us having to stay extra days. These are tag team operating room trips with several different specialists coming into the OR in the same block so he only has to be put under anesthesia once.
Unfortunately the surgeons did not have any June availability so we had to move it to July. This means that I will have to be in Cincinnati with Levi for a week then immediately switch kids and head to Vanderbilt with Malachi a few days later. Not ideal but we will make it work.
Last summer the surgeons mentioned possibly wanting to go ahead and take tonsils and adenoids out during this summer’s procedure but the nurse practitioner mentioned that they require a 10 day hospitalization/local stay after to watch for bleeding. Our schedule won’t accommodate that right now without having to reschedule Malachi’s big appointments with the spine and orthopedic surgeons, so we will talk with surgeons to make sure it is still necessary and will have to schedule that for another date.
A very big part of our life is keeping track of medical supplies and prescriptions. Every month I am refilling at least a dozen medicines from regular pharmacies and specialized pharmacies, formula and g-tube supplies, and diapers. Every three months I refill g-tube replacements and cough assist breathing masks. It requires me to be very aware of our supply and on my game.
It also requires lots and lots of math. Insurance won’t process refills until 5 days before it is due…and some of them take 3 days to ship so I have a two day window to get that refill ordered. And running out of these things is just simply not an option. One day without a seizure med can have devastating consequences on my boys.
This week I called our formula provider and they informed me that the formula the boys use is backordered and had been for three weeks. A similar formula had been recalled recently and all of those users switched to ours leading to supply issues. I was down to 5 cans, and we use one can a day between the two kids. For Malachi it is his only source of nutrition and calories and Levi gets 23 ounces at night (about 700 calories). It is a specialized amino acid based formula for older children that is considered ”elemental”. That means it is already partially broken down making it easier to digest. When we were trying to find the right formula fit for the boys this was the ONLY one that didn’t lead to vomiting.
The supply company told me that I could call the doctor and ask they to send in a prescription for something they have in stock, but the amount of drama that would create in the boys bodies made that an absolute last resort.
I found a very limited supply online but it is marked up to $70 per can (normally around $25 per can) and with the rate of consumption that would cost us $2,100 for a one month supply. So that route was quickly shut down. They do not sell this formula in stores, so I started to panic a bit.
And to be honest I got a little frustrated at myself…for several months we were getting a few extra cans and building a bit of a surplus stash. I felt guilty having insurance pay for something we weren’t always using so I had them hold the extras for a few months. Oh boy, how I regret that decision now!
Thankfully through Facebook I was able to track down another special needs mom in Pennsylvania who was willing to ship us some of her excess as long as we paid the cost of shipping. She will be sending me a batch tomorrow which will arrive on Friday. But that left me with three days without formula.
I planned to start rationing what I had left and watering it down so it would stretch a bit further, and I gave the situation to God. The mom guilt was thick that I didn’t have a backup plan in place.
Later that evening I received a text from someone that lives less than 5 minutes from me. Now let me stop and remind you that I live in a VERY small town. Not a big city.
She said that she ordered some formula for her baby a few months ago and the company accidentally sent her the wrong kind. She called them back to tell them and they sent her a replacement and told her she could keep the wrong order so she put it in her cabinets.
When she saw my Facebook post she went and pulled out those cans and BOOM they were a match. When she texted me to offer them I truthfully couldn’t believe it. The chances of her having the exact formula we needed were so incredibly small. But when she sent me a picture I felt chills pop up on my arms. I asked her how many cans she had and y’all…she had three cans.
The exact amount I needed to sustain my boys until our shipment from Pennsylvania comes.
This is such a clear and perfect example of the providence of God. God sees our needs before they manifest and He has already orchestrated the rescue. What a faith building moment these three cans of formula have provided for me. And hopefully for you too.
Matthew 7:9-11 ”Which of you, if your son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!”
I love watching the Bible come to life in such a living and active way!
Little Levi heads to the eye doctor tomorrow (shhh don’t tell him yet) after the boys therapy appointments. These appointments oddly rank up there with being some of our most stressful and emotionally challenging.
Levi has been using his imagination so much these days and watching him enter his own make believe worlds is so much fun.
And we have to take a minute to talk about how amazing Malachi is.
On Friday he went to school for about two hours. Late that evening I asked him if everyone at school was glad to have him back and he signed ”No”. His reply was very fast and serious so I continued the questions.
Mom: ”Was someone mean to you today?”
Malachi: signs YES emphatically
Mom: ”Was it an adult?”
Malachi: signs no
Mom: “Was it a student?”
Malachi: signs yes
I kept the conversation going trying to get more details and narrowed it down to it being a girl in his classroom and she did something mean to him (rather than said something mean to him).
I then asked him if he was using his imagination and the question seemed to offend him as he angrily signed no at me.
The next morning I brought up the topic again and he verified all the details exactly as he did the night before. So I called his nurse to talk to her and see what had happened. I wasn’t mad at all…just really curious as to what had happened! I knew if it was something serious they would have told me right away.
She thought about the details and said that yes, one of the students had crawled under Malachi’s wheelchair and the teachers made them get out from under there. The student angrily punched the back of Malachi’s wheelchair in frustration and got in trouble.
But the fact that my non-verbal child communicated all of that with me brings me so much pride. What an amazing child Malachi is. And what a blessing he is to me.
We celebrated the moment big time, hoping the positive reaction would encourage him to tell me more things in the future. I just love him so much.
My very sweet friend has been hard at work, sewing new bandanas for Malachi and I have to share her handiwork! There is a company that sells these for $16 each and she graciously sewed us dozens at cost. Malachi loves being able to choose which one he wears each day.
This week has been incredibly hard on me. Back in 2020 when Covid started to spike I found myself having trouble breathing. It was so bad at times I thought I would pass out and I went to the doctor to have some tests run. After a few weeks of testing I was able to be cleared from all cardiology concerns and it was diagnosed as anxiety. I started a medication but it made me feel so loopy and I didn’t feel like I could safely care for the boys and drive them on it.
After a few months I stopped taking those meds and the big anxiety issues disappeared. But last Sunday that familiar breathing issue came back and has stayed with me throughout the week. In addition to the breathing issues my body started breaking out in stress hives. I usually get those during long hospital stays with the kids or the more intense surgeries when my body and mind just can’t cope with reality. But these seemingly came out of nowhere.
In the grand scheme, this week has been a vacation from some of the harder ones we have dealt with, so I have been having such a hard time figuring out why my anxiety has been triggered. Yes, there have been lots of phone calls and hiccups in the normal this week but that usually isn’t enough to throw me off like this.
There is a Corrie Ten Boom quote that says: ”Worrying is carrying tomorrow’s load with today’s strength- carrying two days at once. It is moving into tomorrow ahead of time. Worrying does not empty tomorrow of its sorrow; it empties today of its strength.”
What a beautiful quote that absolutely summarizes what this week has felt like for me.
Last week I ended the entry on this verse from 1 Peter 5, and as the week has gone on it has replayed in my head on repeat.
“Therefore humble yourselves under the mighty hand of God, that He may exalt you at the proper time, casting all your anxiety on Him, because He cares for you.”
I have been trying so hard this week to cast those anxieties onto Him and no matter how much a heap into my hands and toss at God it still hasn’t fully left me. So what do we do when we are casting our anxiety on Him but it still is very present?
Psalm 94:19 “When my anxious thoughts multiply within me, Your consolations delight my soul.”
Even in my most anxious moments this week, God has been very present and very gracious to me. He has given me so many reminders that He is working on my behalf. And I choose to believe that this anxiety within me is meant to slow me down to be able to really watch God work. And as the verse says, His consolations have delighted my soul and shown me the love of the Father.
God is absolutely able to remove this anxiety from me in an instant. So when He chooses not to it gives me a chance to evaluate thy “why” and look for the refinement that may be taking place within me.
Please pray for our family this week as we muddle through the mundane and try to sort through supply shortages. Malachi’s diaper company is no longer accepting his insurance and we have been paying out of pocket for those while we try to find a provider. With the new Monday, Wednesday, Friday antibiotic Malachi is now having diarrhea on Tuesday, Thursday, and Saturday and we are flying through diapers to try to prevent skin breakdown. I need God to open those doors wide as well, as none of the 8 we have called will accept his type of insurance. I guess prayers of endurance for me are needed for those phone call days.
And please say prayers of peace over Levi tomorrow at the eye doctor.