What a full and wonderful week we have had! We started this week with a great session of hippotherapy. This is still his favorite therapy, hands down.

Malachi thoroughly enjoys going on adventures with mom and dad, even if it is as simple as a grocery store trip. He really loves when we go on adventures with the youth group, and this week was no exception. On Tuesday we loaded up the church bus with 16 teenagers and headed to Chattanooga to the trampoline park. Malachi and I drove separate, of course, but he still got to jump with his dad and go to Steak and Shake with the “big kids” after!

I also took Malachi out to his Mamaw’s garden to help pick beans. He loved just sitting in the shade listening to the conversation and nature noises.

One of the biggest adventures from the week was going to the movies with his cousins. Malachi has been to the theater before but never engaged in the movie itself- instead he just listened to the other kids and giggled when they giggled. This time we watched Finding Dory, and I was thrilled to catch him actually watching the movie a few times! He also paid very close attention to the movie dialogue. At one point the seals in the movie started calling for a bird named Becky. Malachi’s aunt was with us, and her name just happens to be Becky. Malachi loves his Aunt Becky, so to hear the characters on the movie saying her name was just too much. He started squealing and laughing uncontrollably and mimicking them by yelling “Beeeeecccckkkyyy!”

We are noticing so many changes these days, particularly with his cognitive skills and his reaction time to simple requests. I was holding him on my lap during an episode of Mickey Mouse Clubhouse, and Mickey said “Let’s give Pluto a kiss.” Almost immediately Malachi leaned over and gave me a big smooch on the cheek. He has been paying such close attention to his environment and it is so encouraging to see him understanding things.

I am also seeing big improvements with his eyesight. This week he has been studying my face for long periods of time. He loves to watch my mouth form a smile, and seeing his reaction to my facial gestures lets me know he is seeing better. Praise the Lord!

I am also very happy to report that Malachi slept through the night one night this week! This is HUGE as it is maybe the 3rd time this year that this has happened. Each week Malachi picks a time to wake up like clockwork, and this week’s time of choice was 4:20am. Last week it was 3:55. So literally for 5 days straight Malachi woke up at 4:20 on the dot. It is both fascinating and very annoying. The night he slept through the night, he coughed at 4:20 but never fully woke up. It was a glorious sleep!

I know I talk a lot about how blessed we are, but lately I have been processing that thought a bit. I ran into a former acquaintance after therapy this week and heard the frequent comment of “Oh, I can’t even imagine the struggles you all have been through.” While it is very true that we have gone through many struggles, our situation is different than most.

Lots of families with special needs children go through a period of mourning, as their “typically developing” baby stops meeting milestones or regresses. In our situation, we were given such a grim prediction for Malachi’s quality of life, so every milestone we even get close to reaching is so exciting to us. He just continues to surpass our expectations, and when that happens it is hard to not feel blessed! This week I have had an overwhelming sense of thankfulness overcome me during my prayer times, as I can only attribute these tiny successes we see as gifts from God.

One of my devotions this week mentioned the Israelites from the Bible. It was referencing the story when Moses leads them across the Red Sea, which had been parted specifically for them by God. I thought about the magnitude of that miracle, and tried to imagine witnessing such an event. You would think that their faith in God was set in concrete after seeing His provision.

But it wasn’t.

In fact, the Israelites turned their backs on God, and even grumbled that it would be better to be back in Egypt as slaves. God continued to perform miracle after miracle for them…daily sending manna and quail from the sky for them to eat, yet still their faith wavered…and frequently.

It was a good reminder to me that we are never safe from the side trails of the devil. In fact, when you are closest to God is when the devil works overtime trying to pull you away. Reading the Israelite’s faith struggle was a good conviction for me to make sure I am focusing daily on the wonderful provisions God has organized throughout my life.

While we never got to see the Red Sea part, I know that God has been parting waters for Jake and I since the day Malachi was born. We have walked across dry land, with the raging waters on either side of us. He has been doing the impossible behind the scenes, and absolutely deserves to receive the glory from Malachi’s successes and life story. And I will be doing my best to continually be thankful for the miracles we are given. God is good.

Sincerely,

Jake, Leah, and Malachi

It is always incredibly nice to sit down to write the blog and not have immediate things come to mind to write about. We absolutely love boring, calm weeks!

Malachi’s body temperature has been stable all week so we tried adding a little adventure in our week. On Tuesday we met some friends at the river for a fun day, something that was very much out of Jake’s comfort zone with Malachi. Jake is an EXCELLENT father and loves Malachi so much. Sometimes his fear of the unknown limits the amount of new things he will try with Malachi. When Jake is working, Malachi and I go on all sorts of adventures that we know would absolutely stress dad out, and we take lots of pictures to show him later. When Jake looks at the pictures it gives him confidence to re-do that adventure with him, worry free. Now that Jake is home for the summer he is able to accompany Malachi and I on our first-time adventures, which stresses him out to the max!

Things were pretty tense Tuesday as we ventured down dirt back roads towards the river. I kept speaking confidence into the moment, talking about how much fun we were all going to have. Peeking out of the corner of my eye at Jake, I could tell that he wasn’t so sure.

When we plan for adventures with Malachi we have to really think through the logistics. Malachi is too heavy for me to carry unassisted, so I rely on his wheelchair and a baby carrier that he has definitely outgrown but will get him from here to there for short trips. So the first thing we have to assess is how wheelchair friendly the environment will be. We love living in the country, but unfortunately it is not so wheelchair friendly.

The next biggie that we have to assess is temperature and access to shade. Malachi overheats relatively easily and discomfort sparks his seizures. We also have to have access to a chair of some sort to be able to feed and burp Malachi. We keep a pop-up tent and some camp chairs in our cars to be ready for any scenario.

So as Tuesday’s adventure continued I smiled wildly at Jake, doing my best to reassure him, but also being silently realistic in thinking this may not work as easily as I had hoped. And let me tell you, it worked out better than we could have imagined!

Malachi was giddy at the river and sat in the shallow section with Jake and played. There were other children there and he giggled uncontrollably at their noises and cries. After several hours playing in the chilly water we packed up to go and I was thrilled to hear Jake say “That was actually a lot of fun!” Add river playing to our list of approved Malachi activities!

Truthfully every time we go on an adventure like this I get a little sad, wondering how much longer we will be able to do these things with Malachi. At some point he will be too big to carry a quarter of a mile across the river. But it also motivates me to be as busy as we can during these “easier to carry” years and make sure he gets to experience all the adventure that his little body and mind can handle.

And side note to remind you about the amazing community God has placed us in…a friend from our church pulled me aside this week to tell me that he was planning to pour a concrete ramp on his property so Malachi could have access to swim in the river anytime we wanted. Good, truly kindhearted people. God is good.

Malachi had a very productive therapy session this week. We have started overlapping his physical therapy and occupational therapy, making his total therapy session 1.5 hours long. This is incredibly long for such a little guy, but his work ethic has still been pretty great. To Malachi, these sessions are just a fun date with some new friends, and he giggled through pretty much the entire session. Here is a video for you: 

Malachi also broke his record for pool time, spending over an hour and a half in the water before we made him get out. He and his three year old cousin spent the time holding hands and swimming together. The rest of our week was spent simply living our life and bringing Malachi along for the ride. Jake and I coach the high school girl’s soccer team and have held open fields on Tuesdays and Thursdays throughout the summer. Malachi has been such a trooper and will sit under a tent canopy listening to his cartoon shows on a portable DVD player. He is as content as can be, letting Jake and I work with the girls close by. NEVER did we imagine that this would be possible with him. It is an amazing transformation from last year.

Malachi also learned a new, silly game this week during a dinner at the local Mexican restaurant! We handed him a tortilla chip and he quickly learned how to break it into pieces. He had us laughing so hard at his antics, so I took a video to share with you:

 

This week will pick up a bit as he has several appointments: horse therapy, physical therapy, occupational therapy, feeding therapy, chiropractor, and picking up his new leg braces. Ready, set, go!

With today being Father’s Day, I feel like I need to spend some time talking about Jake and what a great dad he is to Malachi. But I also want to talk about how much Malachi loves his dad. Jake left two hours ago, and Malachi is absolutely convinced that he is somewhere in the house hiding from him. He has been yelling “Dadddddddyyyyyy!” since he left. The connection between them is so touching, and I am so grateful to Jake for being such a great father.

I read an article written by a special needs dad, and it really touched my heart. Here is the link if you have any desire to read it: http://specialneedsparenting.net/because-every-day-is-fathers-day/

This week I have struggled greatly with the suffocating thoughts of life without Malachi. He had an “off” day this week and Jake and I watched him like a hawk , looking for signs of a shunt malfunction. As I stared at his eyes, trying to figure out if they were the “sunset eyes” we have been warned so much about when the intracranial pressure increases, I found myself wondering how our story will end. Will I outlive my son? The heartache in that simple sentence is almost too much to bear. But then when I go the other direction: Will my son outlive me? The same suffocating feelings come. Who will care for him? Who in this world could possibly care for my son as much as Jake and I.

As I sat up at night pondering these questions and thoughts I had to take a deep breath and simply give it to God. There are so many times in my week that I find myself having to stop the ever-turning wheel in my brain and choose to give God those worries and fears. I believe that God is a loving God, and whatever route he chooses for our lives, He will always hold our future firmly in His hands.

I am continuing to trust in God’s providence, knowing that if He chooses to bring me home before my son, He will direct Malachi’s future into the hands of a capable earthly solution. Because He loves me. I also choose to believe that if Malachi is called homeward before me, God will share His peace with me. I am choosing to stop the hamster wheel and simply trust my God.

I hope that through Malachi’s story, you are able to get a raw and real view of faith. Being a Christian is not an easy thing, nor does it exempt you from heartache and worldly struggles. But the hope I find in Christ literally keeps me going on a daily basis. Without that hope, I can’t imagine the state of mind I would find myself in.

This song has become Malachi and I’s favorite for the week: https://www.youtube.com/watch?v=iBmwwwiHrOk

May you feel God’s providence in your life this week, and my prayer for you is that you are able to take your burdens and release them to Him. There is so much freedom in that.

God bless,

Jake, Leah, and Malachi

 

 

Thank you for taking the time to pray for Malachi this week as we dealt with his dental procedure. As usual, things didn’t go exactly as planned but he has healed wonderfully and is almost back to his normal.

Surgery days are always difficult for us, and this one was no exception. I personally struggle to shut my brain off the night before a procedure as I process the “what-ifs”. Before I knew it, 4am rolled around and it was time to get moving for our big day. We checked into the local children’s hospital an hour away and started the dreaded process. The plan was to focus on Malachi’s 8 molars- cutting the gums, drilling out the decay, and putting stainless steel crowns on.

Before we knew it, the time had come for us to give him hugs and kisses and send him off with strangers. Like a band-aid being ripped off we have learned that it is better to get through this step as quickly as possible, and we went back to our little room to wait. We got another curtain room…which we loathe! There is something about sitting nervously and having to listen to 20 people casually chatting on the other side about their in laws and kids…stress free lives. Ah the dreaded curtain rooms.

After about 30 minutes the little phone in our room rang, which is never a good sign. My stomach dropped as I jumped up to answer it. The nurse on the other line assured me that Malachi was okay but that the surgeon needed to speak with me. Yikes. If it is a big enough deal to call, that is one thing. But if it is a big enough deal for the surgeon to stop what he was doing to have a talk, it is never a positive sign. The surgeon explained that there was more damage than they initially realized and said they would need to do some work on all of his other teeth as well. He asked for permission to do what needed to be done to save the teeth from being pulled, which we readily agreed to.

Malachi ended up getting crowns on 15 of his 16 teeth, leaving one little canine tooth crown free. The molars were done in stainless steel and the others were crowned with white, natural looking crowns. Truthfully, it looks great! It looks so much better than my mind had imagined it.

The procedure took several hours…longer than the 45 minutes it was initially predicted to take. We were taken back to the recovery room to see Malachi after it was finished, and he was his usual hysterically upset post-op self. His post-op cry is an awful sound that we don’t hear any other time. It is such a sad and confused cry and immediately puts Jake into Rambo mode, looking for the person causing the pain so he can attack. Literally. So I sent Jake on a walk around the room to calm down a bit and focused on calming Malachi.I picked him up and immediately blood poured out of his mouth. He also had a tube down his nose during the procedure, leaving it bloody and he had dried blood all over his face. Jake and I took turns comforting him and after a long hour in recovery we got him to close his eyes. After he was asleep we were able to successfully get him off the oxygen.

The rule of thumb is that you can’t get discharged until you eat something. Malachi was still bleeding pretty heavily and Jake and I both knew that there was a zero percent chance of getting him to eat anytime soon. We know from previous experiences that Malachi absolutely thrives at home versus a hospital setting, so we talked with the anesthesiologist about making an exception. He saw Malachi’s history and felt confident that we wouldn’t allow him to dehydrate at home so he signed papers for discharge. Malachi immediately calmed down when we strapped him into his car seat to head home.

So the three of us ventured home, all covered in blood and very tired and hungry. We went into our typical surgery survival mode and took turns caring for Malachi and catching quick naps. The first two days were difficult for Malachi but as long as we kept up with his pain meds he did well.

On Wednesday things started to look up and we were able to get him weaned from meds. He started acting like his normal happy self, so we thought he might enjoy a quick swim. And boy were we right…he splashed around for nearly an hour and had a blast! We got him home after a few hours we noticed that his body temperature was rising. That night he woke up with a fever of 102, and we started to get a little worried. Oddly enough there were no other signs or symptoms of anything being wrong so we watched him very closely and kept the fever down with reducers.

Malachi was still acting like himself, but his seizures did start to increase in both frequency and intensity. The first thing our minds went to was infection (either shunt or mouth) so we called the surgeon to get his input. He said that it didn’t sound tooth related but could be the start of pneumonia from the breathing tube. He said if it got worse or other symptoms popped up to take him to the pediatrician.

His fever lasted until Friday, and the entire time he was his happy, silly self. These strange fevers have been popping up a lot in the last few months, and after doing some research we have learned that this is common in children with brain injuries. The hypothalamus part of the brain is responsible for temperature regulation and when it is damaged the brain can’t accurately tell the body what temp to settle at.  We are guessing that the stress of his dental work mixed with the sudden temperature change from the pool water just set his system a little haywire.

But Malachi has been fever free for a few days now, so I guess we are past it all! He is acting great. Yesterday he and I were listening to the television and heard a commercial for a horror movie and he thought it was hilarious for some reason. We started re-enacting the commercial and he got so tickled and I was able to video some of it for you. It will make you smile:

So other big things from this week…Jake and I celebrated our 8th wedding anniversary!

This is the second year in a row that Malachi has had a surgery within 24 hours of our anniversary so we didn’t get the chance to celebrate on the actual day. We decided that we would celebrate with a nice meal the next time we were near Chattanooga, which will hopefully happen this week if Malachi’s complicated little body will cooperate haha!

Divorce rates for special needs families are statistically higher than average families, which is a very sad statistic. But in other cases complicated situations can bring a couple closer together, which is exactly what has happened in our relationship. I am so thankful that God united our paths all those years ago!

This week a very close friend of mine had a pretty big surgery. I went to visit her at the hospital, and discovered that I have some major anxiety when in that setting. I think being back in an adult hospital wing took me back to the days surrounding Malachi’s birth and my recovery. I physically went weak trying to walk through the hallways to see my friend, and had to stop and take a deep breath. I became incredibly anxious and emotional for absolutely no reason, which I never saw coming.

Hospitals can be a wonderful place of healing, but I am afraid that for me they will always evoke emotions that I try hard to stifle. The more that time passes the more I am finding these triggers for my emotions. As wonderful as it was to stay at the Ronald McDonald House for all those months, I not cannot look at the building without getting anxious and emotional. When we have to pass it in the car I have to look away, as it sparks too many memories or dark times in our family. I am hoping that time will help me get past this, but it is definitely still a struggle.

Truly though, I have a hard time finding things these days to complain about.

Psalm 107:28-30 “Then they cried out to the Lord in their trouble, and he brought them out of their distress. He stilled the storm to a whisper; the waves of the sea were hushed.  They were glad when it grew calm, and he guided them to their desired haven.”

I love the wording here…”He stilled the storm to a whisper.” This is a great way to describe our life right now. We have been in the waves, in the midst of a massive storm. And God has stilled the storm to a whisper.

We have crossed all the necessary surgeries (for now) off our list. Malachi is sleeping at least one long chunk at night, giving all of our bodies much needed rest. We are able to do things that a typical family does…swimming, long walks, play dates. We are happy and healthy. We are enjoying God’s whisper on our lives.

Your prayers and thoughts were felt by our family this week as we tackled unpleasant things. Thank you for your support and love. May God find a way to calm your storms this week.

Sincerely,

Jake, Leah, and Malachi

 

Let’s start with some major positives from our week!

Malachi is learning how to swim- and he is really good at it! This is completely fascinating on so many levels. First of all, let’s take a look at the facts…in order for Malachi to use his hands in a purposeful manner much of his other abilities have to suffer, like his head and trunk control. So if we want him to play with a toy, we have to be okay with him dangling his head so he can muster his energy to swing his arm at the toy. Even then, Malachi’s movements with his hands and arms are often wild and sporadic.

The second thing that needs to be mentioned is that Malachi requires support in literally all aspects of his life. He has a special mattress that keeps him in a good position while he sleeps and his wheelchair is extremely customized to allow him to sit independently. But most of his day is spent within arm’s reach of Jake and I for safety reasons, and I would venture to say that 70% of his day is spent in our arms.

Last week we were very encouraged to see Malachi tolerating his new therapy neck ring in the swimming pool. He was very content simply floating on his back and splashing around. But I am so excited to tell you that this week Malachi officially mastered his new device! Let me just put a video here that will explain a bit more…

WOW!!! And yes, I cried.

And this was all achieved simply by us telling Malachi to use his arms. There is so much intelligence trapped inside that body!

So here are some more facts about Malachi’s new hobby. He only likes to swim to his dad, which is so sweet to me. Jake will push him off in my direction, and he would use his little arms to swing his body around and beeline back to Jake…all while yelling “DADDDD”. His face when he is swimming is so precious to watch as it has a mix of determination and sheer excitement written all over it.

He is learning how to flip from his belly to his back in the pool and has surprised us each time we have taken him with advancing his abilities. The video above was taken the third time he used the ring, so you can imagine how much he has improved since then! His speed is truly amazing.

We are also thrilled by the things swimming does for his tight body. Malachi is tolerating well over an hour straight in the pool and after swimming he is able to bend his knees for a few hours. We are able to stretch him very well in the pool, and are noticing improvements in his range of motion. Needless to say, we invested in a small inflatable pool for the backyard so we can add pool therapy to his daily routine.

It is moments like these that bring a much needed wave of excitement into our family. These moments serve as a reminder of the potential that Malachi has and push me as his mom to find new ways to bring out these hidden abilities. If you would have told me last summer that my Malachi would be swimming all by himself this summer I would have seriously doubted you. But look what God can do in just one year!

Malachi also had some adventure this week as he went to the local “jump park” with his cousin. If you aren’t familiar with places like these, picture a giant warehouse full of trampolines. We strapped Malachi  in a baby carrier on Jake and off they went, bouncing and having a blast! I recorded a video so we could share his silly joy with you.

Jake and I took the kids from our youth group to the bowling alley this week, and of course Malachi wanted in on the fun! He managed to bowl a strike and a few spares, beating some of the high school boys. He is getting a little impatient at waiting for his turn while bowling, but then again, don’t most three year olds?

Malachi has been impressing us lately with his vocalizations and every now and then will repeat a sentence perfectly. When this happens, you would think Jake and I were crazy by the amount of rejoicing that goes on. Last night was one of these moments, as Malachi was wide awake and ready to play at 4am. I got up with Malachi and Jake came out a few minutes later to make sure we were okay. I answered: “We’re doing fine! Malachi say ‘Goodnight Dad’!” And Malachi spoke it as clear as day ” ‘Night Dad!” with a big grin on his face. It is in those moments that I have to choke down tears and celebrate ecstatically!

Tomorrow is the big day for Malachi’s mouth procedure, and I have spent the last 3 hours trying to find things to do that will allow me to procrastinate preparing for the dreaded day just a little bit longer.  Jake and I have a love/hate relationship with procedures but it tends to be more heavy in the “hate” category. We fully understand that these surgeries have to happen to keep Malachi happy and healthy, but like all parents, we hate to witness Malachi suffering in pain. And handing him off to strangers is a horrible experience.

There is also some slight PTSD for me when we are back in the medical environment, relying on monitors and oxygen to keep Malachi stable. Even the all too known beeps and buzzes from the machines spark some rough memories from Malachi’s’ NICU days, and Jake and I are usually a bundle of nerves until we pull out of the parking garage and head back towards home!

We will check in tomorrow morning at 6:15 and Malachi will be the first procedure of the day for his surgeon. We will find out the details in the morning about the length of the surgery, and it is all very much dependent on what they find when they start working on his teeth. We know for sure that they will be cutting the gums around his molars, drilling out the decay, and covering them with silver crowns. They will also be looking at the other teeth that are left and possibly be repeating the process with them as well. The dentist explained that the pain will be very similar to them pulling the teeth, and the last time we had to go that route was a nightmare.

As of now, we are not scheduled to stay the night! The only thing that will change that is Malachi’s ability to start breathing normally again after surgery. We always have a bag packed just in case, but we are really hoping and praying that it will not be needed.

Obviously tomorrow’s surgery has been in the forefront of my prayers this week, and I have spent many moments simply struggling for the right words to say. My prayer for him this week has been the same as my prayers before his other big surgeries…that God will send his angels to comfort Malachi when his mommy and daddy can’t, and that God will continue to use Malachi’s life to open our eyes to the mysterious ways of the Father. I don’t have an explanation as to why God made Malachi the way that he did- and truthfully I don’t desire to know the answer to that question anymore…why question such a good and perfect gift from God? But through Malachi’s journey I have been able to catch glimpses of a loving God who has a wonderful plan for Malachi’s life. May the angels sing to him as he sleeps tomorrow and cause him to wake with that sweet smile on his face….silver caps and all.

Please keep Malachi in your prayers this week. Discomfort is a huge trigger for his epilepsy so keeping his pain under control this week will be so important. We also have to worry about dehydration if he is not tolerating his bottle feeds well, and dehydration leads to constipation, which is his other major trigger for seizures. While Jake and I worry about the procedure, we typically are more concerned about the recovery process so we are asking for prayers throughout this week.

Thank you for checking in on our little fighter and for choosing to be a part of Malachi’s journey.

Much love,

Jake, Leah, and Malachi