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Patience

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When we lived in Raleigh, I was part of a close-knit group of  amazing ladies. We have shared many laughs and tears together. Thankfully, when we moved to Virginia, those friendships were not left behind. They have inspired me and lifted my spirits countless times over the last several years. I love them and I…
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Birthdays

Matthew being happy

As many of you know, Matthew has two older sisters. Many people don’t  realize, however, how narrowly Matthew escaped sharing his birthday with one of them. Yesterday, May 28th, we celebrated big sister Ruth’s fourth birthday. Today we celebrate Matthew’s second birthday. For a moment, though, I would like to take a break from our…
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Pacifier

Before having kids, I knew that my children would not have a pacifier. I hated the things. I could rattle off a list of everything wrong with them.

But then I had Erynn, and she really liked her paci. It was a handy little thing for getting from point a to point b when she was tired, or for helping her settle in the middle of the night when her tummy was full but her mind was still going. It became a problem that we finally had to tackle when she was about two and a half. History repeated itself when Ruth came along. Both of those girls loved their paci. Ruth carried the thing around with her (and drove me crazy)!

As usual, though, Matthew broke the rules. He would take a paci, but he didn’t really care for it either way. Except, we needed him to take a paci. It reinforces the skills he needs for bottle feeding and strengthens muscles that will help reduce his reflux.

Never one to make things easy, Matthew did that whole vomiting for months thing, eventually getting to where he wouldn’t put anything in his mouth.

Which brings us to today. I am trying to teach my almost two year old to take a paci. Talk about a “didn’t see that one coming” situation! Hopefully he will learn to love the paci again and learn to like to explore by putting things into his mouth. Our long term goal is to use it as a tool to help break his oral aversion.   My most immediate goal, though, is for him to use the paci to soothe his aching gums, instead of snapping his mouth shut like a little baby alligator or grinding his teeth. OH man! That grinding sound will give you chills. It’s worse than nails on a chalk board!

Wish us luck!

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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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Thanksgiving

“I’m so proud of Matthew! Mom, let’s have a party for Matthew.”

“Okay. What do you want at the party?”

“Streamers and balloons and cookies!”

And so we did. We threw a party for Matthew. Why? Because he is cute. Because Erynn wanted to. Because Matthew did something the other day that has us still picking our jaws up off of the ground.

 

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You know that we have been told that we may never be able to rely on Matthew to intake his needed calories on his own. You know that I have refused to believe it. And, you know that he has been making a lot of progress with his oral feeds. But, he seemed to have reached a plateau. 4 ounces was his limit. The Monday before Thanksgiving, I had a conversation with his speech therapist in which we discussed all of the things that Matthew ‘needs’ to be successful at the bottle: a quiet room, but not too quiet. Something playing on the tv, but nothing too exciting. To be held just so. To have his mouth ‘warmed up’ with therapy tricks. And even then, if he’s too tired or just doesn’t want to, it isn’t going to happen.  I left there feeling pretty darn proud of my Matthew for being able to drink 4 ounces of a bottle, but also beginning to resign myself to the fact that his feeding pump would forever be a part of our lives.

 

 

But then on Tuesday, he decided to take a five ounce bottle. And then another one. And before we knew it, we hadn’t used his tube in 2 days, with the exception of giving meds and his over night feeding.

And then, on Wednesday, he took a bottle in a restaurant. And Thursday he started taking 6 ounce bottles. By Saturday, I had reworked his food, so that his Pediasure was no longer diluted and he was getting all of his calories during the day. For the first time in Matthew’s life, he slept without food being pumped into him while he slept. That night, Rusty and I watched him sleep with goofy smiles on our faces and tears in our eyes.

Which brings us to Sunday night.  We were getting the kids ready for bed and discussing with them that Matthew was going to go to sleep without his pump. Erynn was just so proud of him; so stinking happy for him! She gave him a giant hug ,exclaiming “I’m so proud of you buddy!” Which later turned into the idea of throwing him a party, which changed from cookies to cake, minus the balloons and streamers… because it was a therapy day for Matthew and a grocery shopping day for us and I just didn’t get to it (And I feel terrible about it!)

BUT, Matthew hasn’t used a pump in 3 days. He waited for me to start to give up on him and then he did what he always does: Something incredible. Something that he isn’t supposed to be able to do.

So, yeah. We threw a party for him. And yes, he enjoyed a little bit of cake. And yes, those are tears in our eyes and goofy smiles on our face every time he takes a bottle… because we are just that overjoyed by him and his perseverance. We are that blown away by the miracles that God continues to perform in Matthew.

 

[[1Ch 16:8 NIV]  Give praise to the LORD, proclaim his name; make known among the nations what he has done.

Psa 100:4-5 NIV]  Enter his gates with thanksgiving and his courts with praise; give thanks to him and praise his name. For the LORD is good and his love endures forever; his faithfulness continues through all generations.

 

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Back and Forth

Swinging

Swinging

 

This weekend Rusty took the kids to a local park for a few minutes while waiting for me to finish at an appointment. He decided to put Matthew into one of the baby swings. Matthew’s body immediately stiffened in reaction to the new sensation of sitting in a swing, but his arms relaxed some. He even held on to the swing. The big news though, was his concentration on holding his head up. He kept his head up high and enjoyed the swing.

When Rusty showed me the picture of him in the swing, I cried. It’s not something that I imagined he would ever be able to enjoy. Well, some days I imagine Matthew overcoming everything and playing football like a champ but, a lot of days I try to be realistic with myself and accept that he most likely will never play football or  even sit in a chair that doesn’t offer trunk support.

I swear that boy can read my thoughts. It’s like he waits for me to have a few days of feeling like things are never going to change and then he goes and does something amazing. “Take that, Mom”, he says. After transplant Matthew took several big steps backwards in his physical therapy. But, he has taken several huge steps forward in his speech therapy. He’s drinking 2-6 ounces by bottle and eating 1-4 ounces of baby food (when he wants to, of course). He’s enjoying little baby food snacks and eating things like bagels and doughnuts and french toast. Of course, I have to hold those things and put them in his mouth for him, but it’s HUGE that he opens his mouth for it and chews it and swallows it. Huge.

Pre-transplant sitting up

Pre-transplant sitting up

His ability to sit unassisted is far behind where he used to be, but he’s starting to make tiny steps forward in areas where he wasn’t moving forward at all before. He’s starting to try to roll over from both his belly and his back. He’s trying to bring his hand to his mouth. He’s digging his feet in to try to crawl. He’s reaching for toys more than before (with his right hand. That left hand is extremely difficult for him to get to do what he wants it to). He’s following things more. Comprehending story lines. Laughing at shows. Smiling in anticipation of his favorite part of a movie. He’s jabbering away. He’s using Dada more often and using the occasional Mama. He gets a big grin when I say “I love you, Matthew.” and moves his tongue to form ‘love’ although he’s just getting the “/l/” sound out right now. I swear he’s told me “No” too.

I sometimes feel like I’m on a swing of my own and Matthew is sitting beside me waiting for me to be discouraged on the back swing, waiting to remind me that he doesn’t care what people think, he’s going to do whatever he wants to do and he’s going to do it on his own schedule.

He reminds me of someone I know.

 

 

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Healing Matthew

Cape

A photo-diary of Matthew’s journey from birth to transplant   June 6, 2013 Matthew, at 8 days old, has undergone 2 rounds of hemodialysis and 1 3-day round of prisma dialysis, or continuous dialysis. His body is puffy after having his blood filtered.     June 19, 2013 Finally, near the end of June, Matthew…
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One of the bad times

Ruth and I had a very fun, busy day today. We started out taking the long way home from the bus stop and went by our favorite spot in the neighborhood where we can look out over the river and count the boats. After that we went to the library for story time and then went on a shopping hunt for cheap fall clothes for Matthew. She was being such a great little companion, and we had had a fair amount of success finding good deals on clothing, so Ruth and I decided to stop for some lunch.

She played for several minutes while we waited for our food. Then we had some fun playing with the toy that came in her meal while eating our food. I looked around and noticed all the other moms. Moms with kids about the ages of mine. Moms nursing their babies and lugging a child around on a hip while corralling another. It made me smile to see such a familiar sight. I know I often wondered if I was the only one who did these things. I smiled at the memories of doing those things with Erynn and Ruth, and I was happy. We finished our lunch and continued to laugh and play her new game all the way to the car.

But as soon as I sat down in the driver’s seat, I was hit with a sudden and uncontrollable flood of tears. There was no reason for it really. Nothing new at least. It’s just this thing that happens when I least expect it; usually when things are going well and I’m feeling happiest. It’s a stab to the gut that reminds me that the future is a very muddy place. It’s an evil little voice in my head that says “sure he’s making progress, but will he continue to make progress? So what if he learns to take a bottle! That doesn’t mean that he will ever be able to have his g-tube removed. He may learn to move food to the back of his throat, but that doesn’t mean he will ever learn to control his hands enough to get the food there himself.” It compares the baby that we saw in the grocery store, a baby that was probably half his age, to Matthew, pointing out how much more that baby moved and talked; that that  baby was able to grab at things.

That’s the hardest part of all of this: seeing children younger than Matthew. I know that he has overcome a lot. I know that he is behind for his age. But, when I see another baby, when I watch friends have babies and then watch those babies grow, it is then that I am slapped with the reality of exactly how far behind he is. I’m used to the way he his. I just don’t realize how quiet and still he is until I see a younger child wiggling and jabbering. It is then that my mind says “WOW! How can he possibly ever get to that point?”

I sat there in the car with those unwanted tears streaming down my face until they were done. I wiped them off, smiled at Ruth in the mirror,  hid behind some sunglasses and continued on with my day. I hate those moments. I hate that they come without warning. I hate crying, and I hate crying for no reason even more.

He’s already an extraordinary kid. Matthew may never reach the point of ‘normal’. I am okay with that. I am thankful just to have my Matthew with me. I don’t care about the rest.

I guess that is why those bad moments upset me. They make me feel, though only for a moment, like there is more bad than good in his little life. That simply is not true! That kind of thinking doesn’t deserve the light of day. Yet, it stole a few minutes of my day today. Tomorrow I make them up with extra hugs and extra kisses for my little super hero.