Malachi made it through another full week at school without any issues or sickness. Each week that passes he falls more in love with his new routines. In fact, this morning as we were getting him ready for church he yelled the name of one of his favorite teachers. We had to explain to him that he wasn’t going to school today, but would get to go to church instead which seemed to appease him.

Malachi on his new front porch!

School has made him Mr. Independent in so many ways and Jake and I have been thoroughly entertained by his new possessiveness over things. This week I was feeding him applesauce at dinner and I stole a bite. Malachi saw me and stuck out his jaw, giving me the “how dare you” look. He started swinging his little arm at me, insisting that he get the bites instead of mommy.

He is still being a little stinker in his seat- trying his absolute best to get out of it. It always makes me cringe in pain when he does this- it can’t be good for his neck, but he thinks he is a real comedian when he gets like this.

I snapped this pic of his angry face this week to share with you. He gets very defined forehead divots when he is really mad. His expressions are developing more and more each day. He even rolled his eyes at one of his teachers this week…something he does frequently towards me and my shenanigans.

Malachi had his first school meeting this week. It was a meeting with the school psychologist talking about what category he should fall under for special education services. This step has to be done before we can talk about his IEP. Let me tell you all, it was so odd being the parent in the room instead of the teacher leading the meeting. What an odd turn of events life has taken. I am very grateful though for my years as a special education teacher prior to having Malachi as it has familiarized me with the process and laws.

Jake and I are very excited to tell you that it seems that we may be moving this week into our new home! It looks like all the finishing touches will be completed by Thursday and we will be having church friends (and anyone else local!) help us move our things in on Saturday. I am so excited about this transition. I am looking forward to Malachi’s shower more than anything else as bending at the waist is no longer possible. Bring on the accessibility! We have been spending a lot of time over there this week cleaning and organizing.

Here is a picture of the front. As you can see, we pull up right in front of the door and wheel him onto the porch. If it is raining, we made the front large enough to back the van under and get him out on the front porch without getting wet. Our porch columns should also get done this week!

Here are a few updated pictures from the inside.

Baby Levi’s appointment went well this week. We will see high risk on Wednesday and get to see that sweet little face again. I am 28 weeks today and definitely feeling pregnant.

My emotions are still a little haywire these days. As I have said over the last few posts, I am sure that pregnancy hormones have something to do with it but regardless it has been a struggle. I keep finding triggers that bring up such hard memories for me. Very odd and simple things keep happening that take me back to Malachi’s NICU days.

For example, I recently dug out my maternity clothing. The last time I wore these clothes was in the weeks following Malachi’s birth as I traveled back and forth to the hospital to be with him. This week I put my hands into the pocket of a jacket and was flooded with emotions as the depth, feel, and placement of the pocket reminded me of the hundreds of times I put the Ronald McDonald key into it.

Simple things but loaded with so many raw and un-dealt with emotions.

Malachi hasn’t been very consistent with his sleeping leaving me a little more sleep deprived than normal. Lack of sleep also increases Malachi’s seizures and this week has been a little unpredictable for both of us. Wednesday night was a rough one, with Malachi falling asleep right when it was time for us to load up and head to school. I chose to delay his day a bit and let him sleep on me, taking him in late.  I dropped him off and as I headed back to my car the tears began to flow.

I read an article this week titled “38 Ways to Tell If You Are A Special Needs Parent”. As I read #35 I couldn’t help but relate.

#35) You are always fluctuating between feeling like a boss, and feeling totally unqualified to raise your child- sometimes within the same hour. 

Let me tell you all- most days I feel completely and utterly lost in our world. I am always second guessing the decisions I make for Malachi and have to daily rely on guidance from God. On Thursday as I got into my car and the tears were flowing down my face I simply told God “I am worn out.” I immediately flashed back to a night I had when Malachi was in the NICU and I verbalized this same cry to God.

Both times, lyrics to a song immediately came to mind. I have typed out the lyrics for you, bolding the lines that have hit my heart hard this week:

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.

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.

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”.

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.

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

I am so proud to announce that we have made it to the 25 week mark with Baby Levi!! This is officially the longest that I have ever been pregnant and we couldn’t be more thrilled. Here are some half-hearted attempts at a cute pregnancy photo. I have a keen ability of being awkward regardless of the situation so enjoy the “Where do my hands go?” face.

But what would week 24 be without a little bit of irony thrown in the mix…Before I go any further let me reassure you that Baby Levi is doing great and our appointment with the high risk doctors went well. No new concerns on the radar and the things we are watching are unchanged, which is a good thing. He is 1 pound 7 ounces and loving life in mamma’s tummy.

This was the first ultrasound in which Levi cooperated and stayed still long enough to get a few good profile shots. He spent most of the 30 minute ultrasound playing with his fingers and resting his hands on his head.

Now time for the irony. Yet again, at 24 weeks pregnant, Jake had to drive me to the emergency room. The last time we visited this ER was the night Malachi was born, so the emotions were roaring within me.

Long story short, I was walking at soccer practice and was attacked by hornets. They stung me once in the face, four times in the arm, and twice in the pregnant belly. Yup, you read that right. NEVER been stung by a hornet in my life, but just so happens that I got stung twice IN the pregnant belly, AT 24 weeks. Lovely.

After the initial shock wore off I went and sat in the car to see how my body would react to the stings. I didn’t want to drive anywhere in case my breathing or consciousness was affected, so I immediately called by OBGYN to see what I should be doing in a case like this; I was sent to voicemail by both the regular OB and the high risk. Within five minutes I started having an allergic reaction and hives popped up from scalp to toes. I was trying very hard to keep calm, but my chest started to get tight and I knew we needed to go immediately.

Jake jumped in the car and off we went…that same awful drive to that same ER with so many memories. I had the OB call in ahead of time to let them know I was coming. We walked in to a full waiting room and when I checked in they told me to have a seat and they would be with me soon. I very firmly replied, “I am 24 weeks pregnant and my chest is getting tight. I need to be seen immediately.” Within a few minutes they had checked vitals and run an EKG to make sure that my heart was cooperating. Levi was squirming around like a wild man, which was so incredibly reassuring to me, but I wasn’t sure how the foreign substance the hornets injected would affect him.

They were able to administer benedryl and prevacid via an IV and we watched and waited as the hives started to disappear and my chest tightness went ahead. They monitored me for a few hours and sent me home when things had settled a bit. Here is a picture of my belly a few hours after treatment…Jake and I have had some good laughs over the chins I developed this week.

I stayed swollen and itchy for several days so I kept a steady stream of benedryl in my system. This was my face (from the one face sting) the next morning haha…

So enough from that adventure! Let’s talk about Malachi!

Malachi has had a wonderful week. He is starting to learn the school routine and truly enjoys going each day. We have worked up to over 2 hours of him being at school without momma and the confidence of the classroom teachers is growing more and more each day. This week they successfully fed him several times without assistance, which is a huge feat.

They are also “learning” Malachi well, including his quirks. For example, his breathing is still a little junky and labored from his sickness last week. If you don’t know Malachi well, you would probably panic thinking he was struggling to breath. If he develops a burp it is amplified and sounds even worse, which is what happened on Thursday. They immediately texted and asked about it and after explaining it was probably burp related, they were able to successfully get a burp out and his breathing steadied again.

It is reassuring to me that when in doubt they will call and get more information. Overly confident people and Malachi are a bad mix, so I really appreciate them taking the time to learn him and ask when they are unsure r nervous.

 Malachi has been so vocal lately about his emotions, and using his eyebrows to express so much. One of the highlights of his mornings is when I run the hair dryer. A few weeks ago I “shot” him with a burst of air and he made the angriest face and then asked for more. Since then it has been our game that the hair dryer “gets” him (which he will furrow his eyebrows at), and then he giggles when it goes away. It is a true love-hate relationship, and unfortunately I didn’t capture the love side in the video haha. But I assure you that he loves it. He particularly likes when the air hits his belly so he will lift his shirt to show me where to shoot the air.

Malachi has also been spending a lot of time in his canoe. He loves the independence of sitting up without assistance, and he can throw his body around wherever he wishes. He is also learning how to get himself out of precarious positions when he lurches certain ways, and we try to be as hands off as possible to help him learn. I took a short video for you so you can see how well he is sitting unassisted in it!

Aside from our panic moments with the hornets, this week has been a great one. My patience level is improving with the two hour breaks I am now getting, and my level of productivity has been remarkable during that time!! It is simply amazing how much more I can get done when I don’t have to focus on Malachi! Even the smallest things like eating lunch alone have been such an odd experience to have to get used to.

I even did a solo grocery trip on Friday to the local IGA when Malachi was in school and got supplies needed to make a good homemade dinner for Jake. Having time and energy to think through more than the next hour is such an odd sensation.

And the best part is, that there is no guilt in it for this momma! Malachi loves being at school, so it truly is a win-win situation.

This week I have been focusing so much on the compassion Christ had. Throughout the gospels we read story after story of Jesus coming into contact with complete strangers, and the phrase “And Jesus had compassion on them” shows up time and time again.

The love that Jesus Christ has for each of us is such a rare and exciting gift. It is completely undeserved and unwarranted. Even us in our dirtiest rags are loved immeasurably by Him. WOW! I love reading the stories about Jesus coming into contact with people despised by society yet “He had compassion on them.” What a lesson that has been to my heart this week on how I interact with others.

Do I show others the love that Christ has shown unworthy people like me? Honestly, no. But what a challenge that is- to love the undeserving in that way. If you get time this week I highly encourage you to read through the book of John, and when you do simply make a list of the characteristics you see in Christ as you read through those stories. What a challenging and humbling experience reading through those can be.

Please remember us in your prayers as we continue to inch closer to move in day. I am trying to make certain my stress level is staying low and my energy is reserved for my littlest one. He has been situating himself on some of my nerves leading to some pretty severe back pain by the end of the day. Sleeping is always a challenge with Malachi, but with added pregnancy pains I am not able to rest comfortably when Malachi gives me time to sleep.

Thank you for taking the time to check in on our growing family!

God bless,

Jake, Leah, Malachi, and Levi