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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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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