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Tuesday, October 7, 2014

Finally! An Update on Nate the Great!

I am sorry that this post is so late in coming.  So many people have prayed with us through his illness and rejoiced with us with each bite and milestone. I have wanted to write about his amazing progress, but there is so much to fit in!  It inevitably comes out in a jumble.  Now that I have some separation I can condense a bit better, but it still sounds a bit scatter-brained.  But, hey, I am a bit scatter-brained, so this post is an accurate representation of it's author.

If you have no idea what illness I'm talking about, you can read about Nate's journey here, here, here, here, here, here, here, here, and here.  Or you could just pretend you read all of that.

Cliff notes:  Nate and Jack both went through an illness that has no name but is most likely genetic, wherein they lose their sense of hunger and begin to lose weight dramatically and essentially starve until a feeding tube is used to make them gain weight.  They were both calm, serene, and sweet all the while, which made it difficult to detect that there was anything wrong.  Nate took eight months to learn to eat because he had sensory issues that complicated his recovery.

All caught up?  Good.  Here we go.

Beginning to stand at furniture or this windowsill, which is the perfect height. This was in the Spring.

We realized in the winter-spring time that Nate was not hearing.  He still wasn't walking, but we expected that after all he's been through {Jack didn't walk until 21 months, and he recovered much sooner from his illness}.  More important to us was that he didn't seem to hear when we entered the room and he still wasn't saying anything clearly except "Ella" and "Where's Ella?"

He loves Lellah.  This was when they were playing library.  I am amazed at what he allows her to do.

We discovered he had standing fluid in his ears, so his balance and hearing were really off.  He had tubes put in the day after Mother's Day, and started improving pretty quickly.

Looking at a 3D book with Poppy

He was {and still is to a point} very afraid of loud noises since his surgery, but he's been a real trooper.  He started saying more words and taking more steps along furniture within a couple of weeks.

This kid loves to look at books.  He will look at books over playing with toys.

On his second birthday, June 23, he began to walk.  If you have kept up with this derelict blog, you know that On his first birthday he began to eat.  I am convinced that at this pace he'll potty train himself for his third birthday.  A mom can hope.



Once he began to walk, we noticed yet another problem.  He was walking in an odd way, using his toes way more than he should.

This is only exciting for the first few moments.  After that it is just the typical pathetic parent video of a mom trying to convince an almost toddler to do something he has no plans to do.  I would edit it out if I knew how, but....  So just watch the beginning, mmkay?

We had him evaluated by two therapists and an orthotist, and the consensus was that he needed braces.  The P.T. said that, in very technical terms, Nate's feet are squishy.  They are still baby feet, even though he's been walking on them for a couple of months now.

Can you see his baby feet?  Did I mention he likes books?

He has no muscle tone where he needs it, and these braces should force those muscles to step up {pun totally intended}.  We don't know how long he'll need them, but hopefully we're looking at less than a year.  We also found out that in a physical sense, Nate is about a year behind.  He's a smart cookie {I think.  Let's just assume because of his love of books.} but he is at the physical level of a 13 month old.

He's had his braces for a month now.  They're camouflage with black straps.  Very cute, very manly.  He wears them pretty much all the time.  He loves them and will bring them to me in the morning, wanting them on before he even gets his clothes on.  I'm so thankful for that!

As to whether they are working, I don't know.  He's clearly improving in his walking and balance, but how much of that is his braces and how much is just being more comfortable walking?  I don't know, but I'm happy to see an improvement.

He is speaking a lot more, but I am at a loss to understand almost anything the child says.  I have learned that it is common for a child who speaks later to use full sentences or at least phrases instead of single words.  I know that he is doing that some, because I can recognize "it is" and "this is it" and what is it" and things like that.  It is harder to pick apart words when they're strung together, though, which sometimes leads to frustration on both parts.

He is still a really happy kid.  He always wants to do things himself and yet he will often let Ella dress him up and play doctor with him.  He apparently often has a broken leg, because she makes casts out of scarves that he will keep on for hours.  He mimics everything Jack does, but he doesn't say his name yet.  He is selective, but he will latch on to certain people and make funny faces and tease and tickle.  He is very hard to discipline because he makes me laugh so much, yet he is the strongest willed of the three.  He loves any book, especially ones with flaps, and babies.  Oh, he loves babies.  Babies are toys {dolls, stuffed animals, other toys} that he can hold and cuddle.  If it has a face, it's a baby and he loves it.

So there you have it.  Our baby, who is not really a baby anymore, is doing really well.  Thank you for your prayers, concern, and love for our family and for Nate.  He is a joy to all of us and we are blessed to have him.