After all…

I’m feeling a bit of rage coursing through me.

I’m afraid for the next person who says to me “I’m just a little concerned about his breathing.”. They may or may not end up with a broken nose.

Here’s the thing. I know you are concerned, but your statement implies that I am ignoring a serous problem; that I am not concerned.

Here’s what you should know. He was seen by 3 PICU doctors who did not offer any help or advice about this ‘breathing problem’ when he was hospitalized this summer. He was seen by his pediatrician, who was “concerned” and sent us to a pulmonologist. The pulmonologist was “concerned” but said it wasn’t her problem and sent us to an ENT. The ENT said there wasn’t a problem and put him on Nasonex. And then the problem continued to grow.

His nurse was “concerned”. The home-health nursing supervisor was “concerned” and curious about what we were ‘doing about it.’  The nurses that draw his weekly labs mentioned every single week that they were “concerned”. His three therapists were “concerned”

We tried to get back in to see the ENT earlier than planned and couldn’t. His geneticist tried to get us in earlier and couldn’t. His hematologist was “concerned” and wanted to admit us to the hospital so that we could get seen sooner. I didn’t want this so, we saw the pediatrician again, who was “Very Concerned” and sent us to the hospital, where he spent 4 days in the PICU. While there, he saw more ENTs and was scoped to get a clear picture of his sinuses and throat. He also saw several PICU doctors. They tried mixing helium and oxygen as well as various flow rates of oxygen. Nothing helped. The ENT once again said it wasn’t their problem. It’s neurological. The on call neuro agreed that we needed to have an MRI and see his neurologist.

Today we saw neurology. I’ll give you one chance to guess what she said.

Yep. She’s concerned about his breathing and wants to know when he’s going back to the ENT. She’s agreed to schedule an MRI but doesn’t think we’ll find anything helpful. After all, he does have a severe brain injury.

I mentioned his sudden loss of strength in his neck and legs. But… he does have a severe brain injury. Now, I’m no neurologist. Or doctor of any kind, for that matter. But, it just doesn’t seem right that an overnight loss of muscle control can be blamed on an old injury and that there is nothing to be done for him.

It’s a common problem when it comes to Matthew. Everything is “Well, he does have a brain injury.” or “We know what to do for kids with this problem who are older, but we have no idea what to do with a kid as young as Matthew.” (To which I would like to scream, “Then Google it!”)

Most people want to stop there, as if that excuse is enough. I won’t. I can’t.

I need a punching bag.



Prayers and Reality

Me With You

Recently Erynn and Ruth have been having trouble sleeping. I’m pretty sure that it’s the manifestation of their anxiety after Matthew’s three weeks in the hospital this summer. We’ve been praying with them, but a couple of weeks ago, we switched from praying with them to getting them to try to voice their prayers on…
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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!


Back and Forth




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.




Healing Matthew


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.


A bottle!

If you have been following along with us for a while, you know that Matthew has a long history of feeding problems. He came home from the hospital being tube fed and just as we started to make good headway in drinking from a bottle, he began to projectile vomit and, consequently, stopped a paci or  a bottle. He began avoiding putting his hands to his mouth at this time too. And so began the long road of oral aversion, reflux, tube feedings, surgery, heartache and more.

Over the last year, we have been told more than once that we may never be able to rely on Matthew to take his full daily calories by mouth. This is another one of those things that your heart says “I refuse to believe that to be true” and your mind says “I can see how that might be the case.” Matthew has had his g-tube in place for about 11 months. In that time he has taken zero liquids by mouth and has struggled to eat any baby food, maxing out at an ounce of food.

It made me sad to think of all the things that he may never taste. But more than anything, that feeding tube makes me mad. I want to think that it was all avoidable. If only. If we had taken the NG tube out earlier, been willing to let him get hungrier before offering him a bottle. If we hadn’t let the vomiting go on for four months. If we hadn’t increased his feeding volume so quickly. If his transplant had only happened sooner… If only.. then Matthew wouldn’t be constantly hooked up to a bag of food and a pump.

But then transplant did happen and I began to feel hopeful again. A small sliver of me actually expected him to wake up from surgery and magically be able to eat. And a whole lot of me was disappointed when the unrealistic didn’t happen. I was even more let down when his speech therapist wasn’t willing to try bottle feedings with him until we had a swallow study completed. She was ready to keep trucking with what seems like zero progress in the pureed foods department.

Well you all know me. I don’t really do what I’m told. So this past Saturday I offered Matthew a bottle and he drank 7 ml. And I cried. I did not think that I would see him drink anything from a bottle again. But he did. 7 whole milliliters. Which, in the grand scheme of things is really only a few drops. But a few hours later, it was time for him to eat again. I again offered him a bottle and this time he opened his mouth in anticipation and drank over 20 milliliters.

Proud Baby

Over the last several days we have offered Matthew a bottle at every feeding that he is awake for. He has grown more and more coordinated. More and more efficient at the bottle. This evening he drank 3 ounces (90 mls) without taking any breaks or dribbling much out of his mouth, and he did it all within 20 minutes. He is quickly moving towards taking his formula through a bottle! To top it all off, we’ve been able to disconnect him from his feeding pump during the day,as well. What he doesn’t drink by bottle, we are giving via gravity feeds. Rusty and I are totally shocked that he has been able to tolerate this. For the last year, we have been on a teeter-totter with getting sufficient calories and volume into him without irritating his reflux and inducing vomiting again. He was only able to take in 80 mls over the course of an hour.  Suddenly, though, Matthew is taking 140 mls at once. It’s quite miraculous. Watching him happily suck on a bottle has brought me to happy tears more than once.

We did follow orders too. Well sort of. We didn’t wait for a swallow study before introducing a bottle, but we did schedule the swallow study. It took place this morning. Sort of. Matthew was too concerned with smiling at the tech to actually drink from his bottle. After some coaxing and syringing of liquid into his mouth, we were able to get enough imaging to be confident that he isn’t aspirating. They are going to recommend that his speech therapist work with him to increase bottle skills and then retake the swallow study.

I’m willing to bet that Flirty McFlirt will be preoccupied then too.

too busy smiling to drink his bottle

too busy smiling to drink his bottle