Sitting Up Straight

Another great week in the books for Malachi! He was able to go to school every single day, and he is up to his maximum time (3 hours). I take him in each morning at 10:00 and spent about 15 minutes getting any last minute burps out before I leave. The teachers are learning how to burp him, but until they have it mastered, this at least buys them some time before he needs to be burped again.

This may sound odd, but Malachi is having less seizures at school than he is having at home. I think him being mentally engaged continuously has something to do with it? Either way, I am thrilled by this!

His teachers are successfully feeding him a pouch of food a day by spoon and he is learning how to be vocal to them about his wants. He absolutely loves being able to make decisions, so they give him several opportunities each day. For example, this week they allowed him to decide which teacher would feed him “bite bites” and he was very specific about his choice, using his frown face for one name and his yes dance for the other.

He is also sitting up even taller than last week! His desire to be a big boy is greater than ever. We were able to get him to a complete upright position at the table this week…he was fascinated by the process.

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Malachi also loves routines, so this full week at school was exceptionally wonderful in his eyes as he was able to follow the exact same morning routine each day. Each day I tell him the plan from start to finish and his eyes light up with anticipation. Mondays seem to be his favorite as he gets to go to school, then horseback riding, then soccer.

This coming week is a big one as we will have Malachi’s first ever Individualized Education Plan (IEP) Meeting to discuss his needs and goals for the coming school year. These meetings can get dicey for some parents, but I don’t anticipate any big issues as they have been accommodating thus far.

On Saturday we took some of the youth group to serve at the local food bank. We do this every September and are always so proud of the teens that make the decision to give up their sleeping in to serve others. Malachi has gone every year (even in mommy’s tummy) and is simply fascinated by the chaos involved with filling the bags.

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Baby Levi is doing great and is still as opinionated as ever. In fact, this week he was kicking at Malachi so hard that Malachi’s leg was coming up off of my belly. We will see the regular OB this week for a checkup and the dreaded gestational diabetes test, something I never made it to with Malachi’s pregnancy. Then next week we will meet with high risk where we will get a look via ultrasound at Levi. They will take measurements and gauge how things are progressing, and then we will likely be going to weekly appointments from 30 weeks and on.

The goal is still to deliver between 34-36 weeks and today I am at 27 weeks. Not much time left! Our other goal is to be in the new house as soon as possible, as in THIS WEEK! We are having a hard time getting the subcontractors to follow through with their promises that they will show up and work. But we are very close to being finished.

A few weeks ago I shared our school photo flop with you. It was an emotionally hard thing for me, and sparked emotions again this week as the photos came back. This is the final product from the photographer who said this “was the best one”.

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Obviously we are still planning to do re-takes.

While receiving this picture did spark emotions, it did not open the floodgates like another encounter this week did.

In the special needs world there is something called a Durable Medical Equipment Provider (DME). These companies help with any big items like wheelchairs, standers, and other specialized medical pieces of equipment. When Malachi was younger we connected with an amazing DME in Chattanooga that always went above and beyond to help get him the equipment he needed. They also took the time to learn him and his needs to better serve him. Several months ago we found out that our insurance company was no longer working with this DME so we had to start the process of finding a new one.

Malachi is about to outgrow his special crib mattress which is made by a company called The Comfy Lift Bed. They make a larger, twin sized version of the mattress and the time has come to try to snag one. I made the phone call in April to the mattress company to see which DME they would contract with and they gave me the information for one in Chattanooga.

Here is the process for getting Malachi equipment:

  1. You have to get a prescription from a doctor
  2. The DME evaluates your child to see what size he needs
  3. You have to have a letter of medical necessity explaining why he needs this exact piece
  4. This letter needs to be signed by a doctor
  5. It then gets submitted through insurance for approval or denial
  6. A few months later you receive the product or you get denied and fight to appeal

So back in April I began this process. In early May we had the prescription in hand, the DME evaluation, and I sent over the letter we used to successfully get Malachi’s toddler sized mattress. The hard part was done!

Since May I have been contacting this DME to follow up on steps 4-6 and was promised repeatedly that it “would get done this week!” Time after time I was told this and time after time I would not hear any response from insurance.

Finally three weeks ago I was given the impression that it had been sent to insurance and we would hear something soon; the typical turnaround for insurance decisions is 2 weeks. When I hadn’t heard anything on Friday I contacted insurance to see where we were at in the process only to be told that the request from the DME had never been received.

Maybe pregnancy emotions played a factor, but I was beyond floored that once again I had been misled. I contacted the DME to find out that it still has yet to be sent to the doctor for a signature. They predicted that it would be several weeks before it was officially submitted. And then several more weeks to get the product in hand (assuming it is approved).

This absolutely shook me. I am Malachi’s advocate. I have to fight for him, and I felt like such a failure. I should have pushed harder, investigated further, switched to a different DME. But I kept assuming that the promises that were being made were going to be followed through.

And then I grew angry. Very angry. Angry that on top of my ever growing to-do list was making sure that other adults were staying true to their word. I was angry that I even had to fight this battle…that people in my special needs world didn’t recognize the importance of meeting Malachi’s physical needs.

I was angry that I have to keep fighting. I was angry that my life requires me to be vigilant and pushy.

And then the thought hit me…he is four years old. This is only the beginning of our struggles.

For the rest of my life, I am Malachi’s voice. I am Malachi’s warrior. I am Malachi’s forever Momma Bear. And the tears flowed. Not because I am not up for the challenge, but because I am required to be a master at something that I have zero experience in. And I can’t afford to fail.

Some days I feel so out of place and ill prepared for the path we are on.

But as I have mentioned before, the pity parties that come can only last a few minutes or they consume me. So I cried silently into my pillow, stared at my little warrior boy laying next to me, and decided to put the armor back on in the morning and go back into battle.

Side note- the bed situation has not been marked “urgent” by the DME and we should be hearing from insurance within a month or so. I have expressed my concerns to all involved and I am hoping and praying that other special needs families aren’t treated in the same manner in the future. Sincere apologies have been made and I am hoping that their actions will back up their words.

Phewwww- it is not often that I allow myself to vent, as I think the more you dwell on negativity the more it becomes a part of you. So I am going to wrap all those bad emotions up and send them on their way now. Thanks for listening to my rant.

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Malachi is continuing to move mountains. His Chick-Fil-A story is continuing to spread all over the world, which is absolutely fascinating to me! About two weeks ago it appeared on a new website and has been viewed over 4.5 million times in two weeks. I had another reporter contact me Friday to share that it will be posted on another website this week.

The more I process that whole encounter the more I see God’s hand in it all. It amazes me the way He works!

There is a sweet little girl at church that is close to the same age as Malachi. They are best buds and she sees him as just another little boy; their friendship warms my heart.

Her mother pulled me aside this morning to tell me that they had gone out to dinner over the weekend and saw another little boy around the same age as Malachi in a wheelchair. When this little girl saw him, she assumed it was Malachi and ran over to talk to him. As soon as she realized it wasn’t him, she talked to him anyway just like he was her buddy Malachi. The family was so receptive to her coming over and talking with their son and the families had a great conversation.

It is those moments that warm my heart- knowing that through Malachi this little girl has learned to love others, regardless of their differences. I think about how the encounter must have also warmed the hearts of this other family and if they are anything like me, caused tears to flow later that evening as the mom reflected on the moment.

I love that God is using Malachi to teach others how to love like He does.

And one more side note- if anyone knows a local family with a four year old boy named Lincoln, I would LOVE to be connected with them! This is the second time someone has told me about this boy and it sounds like our families would have a lot to talk about!

Thank you for taking the time to read my rants tonight. And thank you for continuing to pray for Malachi and our growing family. Life is about to get bonkers for us, and your prayers for strength and wisdom are very much appreciated.

God bless,

Jake, Leah, Malachi, and Levi

2 thoughts on “Sitting Up Straight

  1. He really is sitting up tall so very, very well. It is especially obvious in the picture you posted near the bottom.
    When you do the picture retakes, I am sure you will want to be present but you could see if he would do well with one of the teachers first? Sometimes (as you are aware) children will do more for a teacher than a parent or grandparent. Hopefully the flash will not scare him again. I wonder if there is something they can do to mute that. I would also take one of the great pictures off this blog post and ask if it could be used.
    I know in HS they have random casual pics in the yearbooks. I wonder if they do in elementary. If so, he could be included in those. They should really consider doing picture taking differently for special needs – – – – like have the photographer come to their room where the kids are used to the routine – – think outside the box! It’s a school and adults there like the photographer can get educated, too.

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  2. Leah, you certainly have our prayers. I love reading your post each week and seeing pictures of Malachi. He is such a cutie. We pray that your house gets finished and you get moved in and settled soon.
    May God continue to have you in the palm of His hand. You are a shining example of His love working through as you love and care for Malachi.

    Take care, Love you all, Grandma Weaver

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