Far From There

After my last post, the celebration and revelry that went along with it, I was suddenly stopped in my tracks with the strangest thought; did I imagine all of this?  He’s only 2 and 1/2 and he’s walking, barely, but still he’s shown he can take independent steps so he’s walking and he’s only get better at it.  So what’s all the fuss been about?  Did I imagine this whole neuromuscular disorder thing that I can barely spell?  Did I imagine the parades of doctors, including our own surgeon, preparing me for Aleck’s potential future bound to a chair?  And since he is able to take independent steps are we done?  Can I just call off what has been a very grueling and taxing therapy schedule for the last year?  Am I no longer the mother of a special needs child? Then I woke up the next morning.  The fog of the happy, the thrilling, the exciting, only slightly worn off but my head was much more clear and it dawned on me, we’ve still got a very long way to go.

The day after Aleck was walking Aleck was falling, all over the place.  To be expected but it definitely took the wind out of his sails.  Frankly I was glad that he slowed his pace.  It was nerve wracking and with each fall my stomach would just plummet.  He’s still walking, but holding our hands when going down the hall and only really walking from table to table in our living room, which is perfectly fine by me.  Then he got his new orthotics which we were all worried would really hold him back, but once again Aleck rose above and beyond and is doing pretty well in them.  It takes him longer to walk, he’s definitely still getting used to them, but it wasn’t a set back which is a really nice change of pace.  His new orthotics look just like his AFO’s but with metal cables that run up the sides of his legs and a big white weight lifter style belt that buckles around his tummy.  He’s part Forest Gump, part Hans & Franz, but still going strong thank goodness.

In the middle of all of this Aleck has been sick a lot.  He’s caught two different viruses barely a week apart and has lost about a pound since he spends most of his time puking and refusing to eat.  My washing machine is just as exhausted as am I and with each bout of sickness comes a huge wave of anxiety and stress over the house.  Desperately trying to keep him hydrated and get some nutrients in him every day, reminding ourselves that he’s just sick and it’s all going to get better, and consoling each other when he refuses entire meals saying, “this too shall pass”.  It can be easy to get wrapped up in the frustration of a child not eating, especially when eating is such a regular struggle. And watching your little one get skinnier by the day, eyes more sunken in, ribs poking out, it’s hard not to let that drag you down.   But when the doctor confirms that it’s just a virus and there’s nothing we can do it’s almost like forcing ourselves to slow down, take a breath,  and resign control since we never had it in the first place.  Today it seems he’s on the up and up again and hopefully he’ll be able to enjoy the Passover seders with the family.

In the interim I’ve been speaking with a dietician, the newest member of our always expanding team of medical experts, recommended by our new GI, and she’s expressed serious concerns with the advice and attention we’ve gotten over Aleck’s eating up until now.  That always puts me in a tough spot since my only experience with raising a child is barely 2 1/2 years old and I look to my team to help guide me and don’t really have that much extra time to research each of Aleck’s issues on my own.  It’s even more aggravating when Craig is standing next to me saying, “I’ve been saying that for a year” and all I can do is explain how I asked all of those specific questions to my team and took their guidance.  Our biggest problem is that Aleck is still on infant formula, way too low in calories and nutrients for a child of his age.  We’ve added milk in at meals, but only in a sippy cup, and he only drinks about two ounces on a good day.  I’ve been told by countless of “experts” that we shouldn’t put anything in Aleck’s bottle but his formula, and when we “transitioned to milk” (yeah, that wasn’t much of a transition and still hasn’t worked), I was told to put it in his sippy and not in the bottle.  So now we are taking a few steps back, going to transition him from formula to milk, and see how it goes.  Then we need to work on other areas where Aleck isn’t get enough calories in his tummy.

What’s really frightening right now is how these viruses really have sucked so much out of Aleck.  Even while he was healthy he wasn’t steadily gaining weight which for him is about 3 ounces a week.  To illustrate, Aleck was 22lbs 15 ounces on Christmas Eve.  In January he lost 9 ounces.  Right before he got sick, end of March, he was back up to 22lbs 6 ounces, still not gaining back all he lost in January, and when we were at the doctor on Tuesday he was 21lbs 3.5 ounces.  Yikes.  Thankfully, our new GI is very concerned about Aleck’s lack of steady growth which is why he recommended we start seeing a dietician.  He doesn’t think it’s allergies, and yes he does think Aleck has acid reflux but he thinks, after reviewing all our recent tests, that the problem is mostly muscular.  A symptom or side effect of Arthrogryposis is low muscle tone or hypotonia.  This can effect not just his limbs, extremities, etc, but also the muscles inside of him like his sphincter muscle and his other tummy muscles.  Since he doesn’t move in the same way a non-afflicted child would move, he hasn’t built up a lot of those muscles around his waist and abdomen so they just aren’t strong enough to do their jobs, to close themselves off properly, so the acid from his tummy is flowing up and down him like a hard working El train.  He doesn’t really have acid-reflux, he just can’t close it off so it doesn’t end up in his throat which in turn causes a lot of the vomiting.  We’ve added a new medication, Raglan, to the Prilosec, which should help with the vomiting.  According to our pediatrician it’s the only medication that actually helps to slow that down, helping to keep Aleck’s food and nutrients inside his tummy.  Of course he’s been sick for the most part since we started the new medication so we are hoping to have a healthy week to really be able to see if it’s making a difference.

As always, wish us luck!