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6 months and then some

I haven’t posted in a while. I have drafted probably 5 posts in my head. They just never seem to make it to the page. This is probably due to a combination of two or three things: I simply haven’t had the time during the day to sit down and type and by the time that the house is quiet enough for me to think, I’m too tired to pull out the laptop and type. I have also been waiting on some news from the transplant team and it hasn’t arrived yet. Mostly, though, I second guess my posts. It’s hard to paint a balanced picture of what our life is like. I don’t want every post to be super cheery, because every day isn’t super cheery. But, the days aren’t mostly dreary,either,  although I feel like I have a tendency to post only on the dreary days. I guess I’m too busy enjoying the highs to post about them.

So. 6 Months Post Transplant. (really 7, but who is counting?) That’s where we are. Matthew has continued to be healthy and not have any complications from the transplant. Because of the clot that he had immediately following his transplant, he has been on Lovenox shots twice a day. At his 6 month follow-up appointment we were supposed to be discussing removing those shots from his day to day. BUT, his appointment was rescheduled a few times due to snow. We were finally able to meet with his doctors a few weeks ago. He quietly sat through a very long ultrasound (almost 60 images were taken). He patiently waited a long time to meet with his doctors. He was super cooperative with their check up and even showed off a little with his growing head control. The ultrasound was reviewed and found that everything is absolutely perfect with his liver. Great! Hooray! So this means that we can stop giving him those shots, right? Not exactly. The process apparently isn’t as easy as they made it sound. Now we need to take a blood panel to make extra, super sure that it is safe to take him off of those shots.

Side note: I hate these shots. They are at 6 am and 6pm. His entire thigh is scar tissue from them, and we are having to push the needs through that tissue. (It isn’t easy) The medicine makes him bruise super easy too. He has bruises on his spine from his car seat, on his waist from us holding him during therapy and, of course, bruises all over his thighs from the needles. And then there is the fact that Lovenox is a blood thinner. It is supposed to prevent clots. And it does. Really well. So well, in fact, that the injection sites often won’t clot and he bleeds through his band-aids and all over his clothes and blankets and sheets. I hate those shots. I want to stop them.

Back to his follow-up appointment. When they said, “Ultrasound looks great, but we want to pull some blood for a blood panel to make extra sure it is safe to remove the lovenox”, I said “Whatever it takes to get rid of that medicine!” This is huge because I do not like the lab at our transplant hospital. They just are not good at getting Matthew’s labs. I have insisted on everything being done at our hospital for the last two years. But I didn’t have an option this time. So we waited Again. Almost 2 hours. And we finally were called back. And of  course it took two of them. And Matthew’s clonus started acting up (more on this later). And it took them two tries to get a few vials of blood. But, we got it done and we headed home to wait for the outcome.

A week passed. Then two. Where are these lab results!? Finally all of the labs come back. Everything looks great, except for one elevation in an antibody. They are going to confer with a doctor.. who is out of town for the week! We are currently waiting for that doctor to come back and are gearing up to fight them, should they want to keep him on this medication.

Matthew is on his fourth nurse since January. We are crossing our fingers that his current nurse sticks around. We are in love with her. She hits his therapy hard, knows how to read him, when to push and when to back off, sticks to a schedule, and has the strength and energy to deal with him all day long. And, as a bonus, we actually get along. She has been with us for 5 days now. In that time, he has gone from sitting unassisted for 5-10 seconds to almost 30 seconds. He is tolerating and working hard on belly time and making some progress with rolling over!

Back to the clonus. (I feel like I’m bouncing all over the place in this post!) His clonus isn’t something that I have ever mentioned before. If you don’t know, Clonus is an involuntary muscle contraction and relaxation, in rapid succession. For Matthew, his clonus is in his feet. Initially, his were extremely mild, just a small tremor in his toes that would last a second or two and go away. I really never paid much attention to it until his OT noticed it. She gave us some exercises to help with it and that was that. But then January came. Matthew had the joy of enduring cutting 5 teeth, in conjunction with the flu and Strep. His clonus also kicked up. The tremors became longer lasting and more painful. At first it was just when he was over tired. Then, it became almost all the time. We weaned him off of a medication (he was long overdue to come off of it and in the past it had caused muscle control problems for him) and noticed a little improvement in the frequency of the clonus episodes. They have never gone away though. In fact, they hit almost every night at bed time. They are TERRIBLE. The tremors start in his toes and travel all the way up to his hip. It is incredibly painful for him. He screams and holds his breath and turns blue and then it passes. But they come at him again. Wave after wave for 2, 3, sometimes 4 hours. We hold him, try to sooth him, feel his body tense in anticipation of the next wave, try to stretch his feet and ward it off, try to help him bend his body and ease the pain.. over and over until he just can’t take it any more and collapses into sleep. Then we pray that the tremors don’t wake him up in the night.

At first, his physiologist thought that the spike in tremors was due to the viruses he was fighting, but that went away and the tremors didn’t. So now we need to visit his neurologist. I honestly don’t want to make this appointment. One: because it is in DC and I have grown to hate that city lately. But mostly because I’m afraid of what she is going to tell us. I know that his clonus is due to his brain injury, so, does this sudden, drastic change mean that something has happened to his brain? I’m nervous that it means a study and a few sleepless nights in the hospital. I don’t want it to mean more medication. Medicines always mean some sort of no fun side effect with Matthew.
A few weekends ago, I went on a much needed weekend away with my closest friends. Before we headed home, one of them mentioned that she feels like she’s always getting “oh thanks” looks when she tells people she’s praying for them about X. So, she wanted us to tell her what we wanted her to pray about. I told her that I appreciated her praying for Matthew, but that it wasn’t Matthew that needed prayer. It was me. Matthew is strong and smart and healthy. I struggle almost daily to be content, to not question God, to not be angry at what Matthew is having to endure every day. I’m thankful for him. I’m astonished by him. But I frequently lose faith that Matthew will ever come near reaching normal abilities.

However, I was wrong. Matthew does need your prayers. I don’t believe that he would be where he is without them. That he has lived 2 years without any major hospital stays is nothing short of miraculous. It is miraculous that he never had any further ammonia spikes after her first few days of life. It is miraculous that he started drinking a bottle without a hitch after 11 months of not putting anything into his mouth. It is miraculous that he has had Strep and the flu without needing to be hospitalized. It is miraculous that just 2 months after starting bottle feeding, he maintained his calorie intake, by mouth, in spite of the pain of teething and having Strep.  I believe that all of these miracles (and many more) happened because you all continue to pray for him. God is working on His plan for Matthew’s life.. although it obviously isn’t aligning with my time line.

So please, please continue to pray for him: for his continued growth, his health, his healing. Please pray that we will discover the cause of these tremors and will be able to easily protect him from them. And, if, after all that, you wouldn’t mind praying that I continue to choose to walk in God’s peace, I wouldn’t mind that either.

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Tuesday August 26

Since the surgery, Matthew has had multiple ultrasounds to make sure that blood is flowing properly to the new liver.  Thus far, things have been perfect. This morning, however,  they found a problem. They could not detect any blood flow into the liver from the aorta, or any arterial flow in the liver. This could mean several things.1 The aorta kinked and just needs a little straightening out.2. It is spasming and needs some medications to make it stay open. 3. It clotted. If it’s clotted, then they will remove the area with the clot and reconnect the aorta or have to ‘make a new aorta’. Honestly, I don’t completely understand how they piece things together and rearrange body parts, but I trust these surgeons completely. So, if they say that they have several contingency plans, then I’m comfortable. Not that I’m comfortable. It’s scary to think that he’s going into surgery and they don’t know what they are going to find. It’s scarier than the transplant itself because we have no idea what’s happening.

So… Matthew is currently back in the OR with a team of surgeons. We won’t know what they find or what’s happening for a couple of hours.

But, really, did anyone actually expect Matthew to behave? He doesn’t exactly ever play by the rules.

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12:30 pm

And done!!!! The main surgeon came up to tell us that everything went well. The new liver looks just like the old one and fits perfectly. Preliminary labs indicate that it is working properly. There is a small list of things that can go wrong still, mostly having to do with clotting and bleeding problems.

 

He should be situated in the PICU in about 2 hours.

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August 24th 10:45 am

We just heard from one of the surgeons. Matthew is doing well. His new liver went in around 9:15. There are still several hours of surgery left to go, though.

We also learned that he didn’t have any ammonia spikes during the first part of the surgery. Talk about answered prayers!

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July 24, 2014

Last Friday our team decide to change Mathew’s listing to accept partial liver donations. This should speed things up a bit, ideally. The last child they did this for had a transplant within 48 hours. We are taking guesses as to how long we wait. Keep in mind that Matthew has made it his personal mission to break every rule and expectation set before him. It is also important to note that the other child had a much easier blood type to match for transplant. Matthew is a universal donor, but universal donors are not universal recipients. He can only have an O+ blood type.  Okay. What’s your bet? Go!

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Bracelet Fundraising

Silicone bracelets

Silicone bracelets

As an extension of our fundraising efforts to help support the cost of Matthew’s upcoming liver transplant, we’re now offering silicone bracelets with your favorite hashtag #HealingMatthew on the front and “A.S.A.P.” on the back. These bracelets are for sale in the Square Marketplace for $3.00 each. They come in three sizes, Adult, Youth, and Toddler (8″, 7″, and 6″, respectively) and are an awesome way to show your public support for our son. You can also purchase them directly right here. We are still maintaining opportunities to give directly to the family via PayPal, as well as tax-deductible donations via Matthew’s HelpHopeLive page.

If you’d like to know more about the design, here you go!

Why Grey?

The color grey was selected because of Matthew’s mascot, affectionately called ‘Hospital Elephant.’ Hospital elephant was a gift Matthew received while still in the intensive care unit at the Children’s Hospital of the Kings Daughters. It’s been a favorite toy of Matthews ever since, and joins him on all his major appointments, as well as making frequent appearances during physical and occupational therapy sessions. This is the same reason for the elephant for those of you joining Team Healing Matthew for the upcoming CHKD Run for the Kids.

Hospital Elephant

Hospital Elephant

Why A.S.A.P.?

Two reasons, one silly, one not: “ASAP, whatever that means… probably ‘Act Swiftly Awesome Pachyderm.'” We’re big fans of Horton Hears a Who in this house, and it was on regular rotation for Matthew’s sisters around the time he was born. The idea of ‘as soon as possible’ takes on a completely different meaning in the context of this disease. From the moment of first suspicion that something was wrong, everything was a massive rush. Getting Matthew from the birthing center to the children’s hospital, as soon as possible. Getting everything signed to authorize hemodialysis, as soon as possible. Interpretation of lab results determining whether one treatment or another was effective, as soon as possible. And ultimately, hopefully, a life saving liver transplant, as soon as possible. Early detection, rapid treatment, and fast acting nurses and doctors saved Matthew’s life, and the ‘A.S.A.P.’ is a reminder of just how critical those fast thinking, fast acting moments can be.

We hope to offer additional Healing Matthew centered items in the near future, including reprints of the artwork produced for last October’s fundraiser ‘Music for Matthew’ in Raleigh. Thank you for finding us and following us here, on Facebook, and Twitter, as well as on Instagram via the hashtag #HealingMatthew. We can’t imagine how we would navigate this road without the moral and material support we’ve received from friends and loved ones.

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Botox

The hyperammonemic events that Matthew endured as a newborn damaged the area of his brain that controls his motor skills. At a year old, he still struggles to hold his head up. Even more difficult is bringing his hands to mid-line or to his mouth. For a very long time he has been receiving both physical and occupational therapy. Recently we added a speech therapist and a second occupational therapist. Over the months, I’ve seen Matthew look like he’s about to learn a new skill. I’ve seen him be quite fluid at a skill. And, I’ve seen him lose skills. All along the way, I’ve been happy, angry, and frustrated with his therapy. It wasn’t until a few months ago that I started seeing real progress in Matthew (when we added therapy from a different organization). It feels like for most of his first year he has either been at a plateau or has been losing ground. I can’t even describe the frustration that I feel when I think about that. BUT, Matthew doesn’t ever give up. Even when his therapist says that he isn’t making enough progress, that we aren’t practicing enough with him, that he’s regressing.. Matthew continues to smile and keep chugging along. He’s made tiny little steps: Sitting unassisted for 60 seconds, holding his head steady for longer, tolerating belly time longer, eating baby food by mouth. His PT, however has been dissatisfied with his forward movement. She referred us to a physiologist, hoping to have him put on a muscle relaxer. Thankfully, the physiologist didn’t think that was necessary. She suggested a Botox treatment for his arms.

Hamstring stretches

Hamstring stretches

Just over  a week ago, Matthew had 4 Botox injections down each arm. “Don’t expect any miracles” were the doctors parting words. But, miracles is what I feel like we’ve gotten. Within hours, Matthew’s arm movements were increasing in range of motion and were more fluid. He was no longer fighting us to move his arms through further range of motion. In the days since,  he’s been holding toys more easily. He’s been accepting of us showing him how to shake the toys. He’s been trying to reach for things. Nurse E says that the other day he fell asleep holding his hands together at mid-line. We’ve seen a marked decline in his ‘fencing reflex’ and an increase in his coordinated movement of his arms and his bringing his arms closer together.

Hamstring stretches

Hamstring stretches

This morning he had another OT appointment (we love this therapist). She was so excited to see his progress from last week. She had feared he was plateauing with her. Today, though, Matthew shook a toy twice, On His Own. He brought a toy to his mouth On His Own. He pushed his body up off of the floor from flat on his belly. Normally, we have to pry Matthew’s finger open to put a toy inside and when he’s frustrated or angry, he throws his body into extension (straightening his body and going completely stiff). Today, she tried ‘activating’ his muscles by gently stroking on the back of his hand, to which Matthew responded by opening his fingers and grasping a toy. When he tried to go into extension, she gently stroked his back downward and he relaxed back into his seated position.

Practicing his stretches

Practicing his stretches

Botox will last for about 3 months. We are on the upward swing of the drug taking effect and then at some point it will start to wear off. The hope is that in those three months, he will be able to strengthen his muscles enough to not need any further treatments. The physiologist may not call it a miracle treatment, but  I do. In one week we’ve seen massive improvement that has been a year in the making!

"Speech Therapy" with an Oreo. He did a fabulous job of sucking and chewing on the Oreo.

“Speech Therapy” with an Oreo. He did a fabulous job of sucking and chewing on the Oreo.

 

What therapy lessons look like for the girls

What therapy lessons look like for the girls

 

I’m so proud of him. Daily I am proud of him. He is such a little fighter. I love that he just doesn’t care what others think. He’s determined to prove everyone wrong, and in his own time.

 

 

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Practicing his Cobra Pose

Practicing his Cobra Pose

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Happy Big Little Things

The Crib

Before Matthew was born, we had his room painted, his dresser was set up and filled with clothes and diapers. We had a bassinet and a rocking chair, but no crib. Then everything happened and we weren’t sure if he would survive. I had lots of horrible thoughts, like “It’s a good thing we didn’t buy a crib yet” and ” I wonder if we can return the car seat?” When Matthew came home he had an NG tube, which meant that he couldn’t lie flat at night because he had to receive feedings in his sleep. Several months later, Matthew had a G-tube put in, which meant he was able to lie flat when eating, but we were struggling with vomit problems and were afraid to let him lie flat or be in a different room. On December 29, Matthew turned 7 months old. A few days later he spent his first night in a crib! It was magical. He slept so much better than he had been sleeping in the little bed in our room. He looks so cute sleeping in that crib. It fits him and we are ecstatic that he is content and resting.

Self Soothing

Matthew has always been a crier and he has never been one to stop crying until he’s been rocked or swayed or bounced. Last night, he woke up at his usual time. I usually change him and rock him for the next hour or two, and then he sleeps for a couple of hours before we do it all over again. But, Rusty and I were reading our Bibles, so we let him fuss for a few minutes until we had finished our reading. He never really even cried. He did a little fussy ‘talking’ and then got quiet. AND he slept straight through until 6:00. It was a glorious full night of sleep!

Today we were coming home from a lunch date with Rusty at Matthew’s nap time. He fell asleep in the car and woke up when I carried him into the house. I thought I’d give it another try. I put him in his bed and left the room. He talked to himself for less than a minute and then slept for hours. I love  my big boy!!

By Mouth

He has suffered from a little bit of an oral aversion. A tube down your throat and constant vomiting will do that to you. We’ve found him a couple of times in the recent weeks with his hand to his mouth. He likes to suck on clothes, blankets, or a knuckle. But no food. Last night I got him to easily and happily take some medicine by mouth. He did it again today, too. He’s also been smoothly taking baby food and today he tried a puff. Don’t tell anyone, but I gave him an apple too. Both girls loved to gnaw on an apple when they were little, so last night when the girls and I were eating an apple and I saw him watching me and opening his mouth every time I took a bite, I decided to let him try it. He didn’t eat it, but he also didn’t flinch or cry. He was okay with having food in his mouth and that  is huge.

Rolling

Matthew has gotten really good at rolling over from his belly to his back. When he’s put on his belly, he can hold himself up for several minutes. He has learned to tuck his arm under and roll completely onto his back, quickly and smoothly, to the right or the left.  He’s also learned to keep his head tracking with his body when rolling. Before his body would roll and then his head would follow later. It’s a little thing. But it is huge for us.

 

The past few weeks have brought big little changes in him. We are excited about his progress. We are excited about all that he’s already accomplished. Every time we feel like he’s behind or get sad about what he can’t do, we remind ourselves that it was predicted that he would be a vegetable if he successfully came out of his coma. He stomped right over that prediction. He moves. He smiles. He recognizes faces and voices. He’s learning to roll and to sit up. That little boy is a blessing and a miracle; a constant reminder of God’s grace and  provision, His might and His love.  I am so very proud of my Matthew and so very thankful to my God.

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Sisters

I’m pretty sure that when Matthew gets bigger he is going to have a Love-Hate relationship with these two crazy sisters of his. It is incredible to see the love that they have for him. The poor kid has 3 Moms!

Ruth acts more like a protector than anything. On occasion, she will ask to hold him, but more often than not, she is looking out for him.  When his pump beeps that obnoxious beep at the end of his feedings, Ruth shouts from wherever she is in the house “Matthew’s done!”, as if he’s a roast in the oven. If he’s crying, she runs like a crazy person through the house shouting “Matthew’s crying! Matthew’s crying!” until she makes eye contact with me and knows that I’m on my way to save him. When he wakes up, she is the first to sound the alarm, “Matthew’s awake!”

hospital

Erynn acts as his comforter. That sweet little boy knows her voice and settles down when she speaks to him. If he’s crying, Erynn will come over and stroke his head while saying “It’s okay buddy. It’s okay.” And, almost every time, it settles him. He turns to her and smiles. And, she just keeps talking to him. “Don’t be sad buddy. I’m right here.”watchful

When he is upset, she wants to understand why he is crying and what she can do to help. She wants to hold him and sing to him every day. If it’s time for him to eat, she wants to help. She tries to give him a bottle. She helps put his medicine into his NG tube. Erynn  can’t wait for him to be bigger so that she can teach him how to roll in the grass and to play with the trains and how to go down the slide and swing. She’s going to read him stories and they are going to build things with the LEGOs together. Yesterday, she was telling me all about how much he’s going to love working in the yard with us. “We can all plant plants as a family!”

feeding

He isn’t going to be getting into things as a toddler because they are going to be right on top of him, making sure that he plays safely. He won’t be sneaking out of the house or off with a friend as a teenager, because those girls will be dragging him back him by the ear. They have so much love for him! They understand, somehow, that he’s different. But at the same time, they see his differences as a temporary thing; as something that he’s going to grow out of. I love that about them. They are going to give him every opportunity to be everything that he can be.

They have big plans for him. I can’t wait to watch him grow and play with his sisters.

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Music

When life gets you down, there is usually something that you turn to to help you through it. Some turn to alcohol. (Your liver would like to have a talk with you.) Some turn to smoking. (Your lungs would like to have a talk with you, but can’t.) Some escape in a book. (Your brain thanks you.) Some eat. (Your tummy may or may not be thanking you. What are you eating?) When life gets me down, I like to turn to music and exercise. I pick up the heavy weights when I’m particularly irritated by something. Music, however, music has a way of telling the story of our lives. Music is therapy.

I like to think of myself as a musical person. Not that I can sing or play an instrument. Those genes were passed on to my brother. But, I still associate music with events in my life. In college, when I was driving to campus for an exam, I would pop in a Beatles album. I love the Beatles. Singing along with them helped me to not stress about the test. It gave my mind a happy place to go while I drove. After the birth of each of my children, I’ve sang The Beatles “I’ve just seen a face” to them. After all, I had “just seen a face. I can’t forget the time or place where we just met.”

With Matthew, I prayed and read my Bible, but I found the most comfort in music. I’ve always disliked Christian Radio. It was just too cheesy. I wanted to hear the songs that I sing in church.  I turned to YouTube and found that a local radio station played a few songs that I like pretty regularly. Between the two, I was getting the comfort that I desired. There are a few songs, though, that I associate with the time Matthew was in the PICU, more than any other.  The first is Leelands “Carried to the Table.” The lyrics hit home. I felt broken. But I also knew that I was cradled in His arms. Oh the familiarity of knowing that you aren’t worthy to be in His presence and yet He doesn’t leave your side!

Another song that plays over and over again in my head is Hillsong’s “Cornerstone.” It’s a nice reminder that there is a purpose to it all. It is helpful to sing to God that my hope is in Him, that He is my strength through the storm. He meets me in my car, while I’m singing loud and off key with the tears flowing and tells me “I’ve got you Julie. Rest. Continue to trust in Me alone”

The final songs on the playlist for this stage of my life are Keith and Kristyn Getty’s “In Christ Alone.” and Jeremy Riddle’s  “Sweetly Broken” I’ve got a wonderful husband and loving, supportive family and friends, but it is God who is carrying me through this journey. He is my cornerstone. He is my comforter.  I am sweetly broken, clinging to the cross, lost in God’s love. These songs reminds me what it is that I’m working towards and Who is waiting for me at the end.

And so, I sing on in my off key voice, with my children saying “Oh Mommy. It’s just on the radio” worshiping the God who called me, who loves me, and who carries me through it all.