When It Rains, It Pours

Micah's health continues to improve each day.  Praise the Lord!  He is still in the hospital, and not yet stable enough to be taken home, but things are looking better and better, so that is encouraging.  He decided he really did not like his NG tube, and after pulling it out a few times, and also deciding he will voluntarily eat (as long as it is Pediasure, and as long as it is in the bottle he likes) the doctors decided he doesn't need the NG tube!  Micah, who previously was refusing to even taste a drop of water or food, is now slugging down every drop of Pediasure they will give him, and then screaming and hollering for more!  He is still having his intake gradually increased day by day, to prevent a shock to his system from too many good nutrients and calories all at once, and boy is he mad when that bottle is empty!  So far he is adamantly opposed to any and all sippy cups, spoons, regular cups, or finger foods, but at least he is eating!  We will be working on transitioning from the bottle later.




Other amazing Micah moments:


He is playing with toys, pushing buttons on electronics, and seeming interested in stuff around him.


He is pulling himself up to standing at the edge of his crib!


He is sitting in the middle of his crib, without leaning his head against anything!


He is riding in a wagon through the halls of the hospital, laying on a foam wedge and a nest of pillows, and he complains when the wagon stops!  A week ago he screamed whenever somebody moved him, so this is a big deal!


He is letting Mommy pick him up and hold him for about 30 seconds at a time, sometimes even longer.  He leans his head on my shoulder instead of arching away from me like he is in physical pain when I hug him!


He complains more about being put back in his crib than about being taken out!


He giggles when I hug him!


He is willing to hold a Cheerio under his nose and smell it for quite awhile before he throws it across the room!




The doctors and nurses are all continuing to be amazed by how much Micah is changing each day.  The first day I brought him in, they did not know what to make of this child, nearly six years old, who just lay in that huge ER bed pitifully crying, desperate to not be touched, and fluttering his fingers in front of his eyes.  They are now seeing that this strong, brave little boy has potential, and that he has just been waiting for a chance to break out of his shell!  


The doctor still believes we are headed in the direction of a G-tube for Micah, but a few days ago she was talking about him getting a G-tube before they would even discharge him, and now Micah and I have convinced her to hold off on that and to give him a chance to eat by mouth.  


The doctor was also talking about wheelchairs and adaptive equipment, and now she is talking about holding off on ordering anything yet, and giving the boy a chance to show us what he can do!


Medically, his tests are coming back good.  The nutrition is still making his body react in such a way to indicate that refeeding syndrome is a possibility, but he is skating on the edge of worrisome numbers, and not going any further in the direction of really big problems, and the doctors are watching the numbers carefully.  His heart is good.  His kidneys are shaped irregularly, but function is good and no intervention is necessary at this time.  His hips and knees are affected by rickets but not too severely to limit his mobility, apparently.  He is deficient in all kinds of vitamins, but we are giving him supplements.  


There is going to be a whole lot of follow-up care, and some concerns that we are still waiting for test results on, but so far a lot of the things that could have been really serious are not, so all of this is good news!


Gideon, meanwhile, is enjoying life, for the most part.  He loves food.  He loves the freedom to walk and walk and walk.  He loves our dog and cat.  He loves being able to touch things and smell things and figure things out.  


He is still having a lot of panic about certain situations, such as walking into a building, walking out of a building, somebody new entering a room he is in, etc.  He especially reacts with fear to buildings that feel like the institution . . . anywhere with long hallways and rows of doors send him into panic mode, and he clings to me desperately.  My sweet boy is so scared that he is going to be sent back to his crib any time now.  He is still unsure what is going to happen next.  


When anybody makes a sudden move toward him, he flinches and covers his head with his hands.  Sometimes I see him looking at me, eyes so worried and anxious, and then I smile at him and tell him I love him, tousle his hair or kiss him, and he breaks out into the biggest grin, and his eyes light up, and he is reassured once again.

A friend of mine and her sweet daughter made Gideon this laminated velcro picture chart, to help him to understand transitions and what is going to happen next.  We just started using it this morning, and I'm not sure he understands yet, but isn't it brilliant?  I am sure that as we continue to use this, he will start to understand that the pictures represent events in his day.  And since our life is so chaotic right now, with being at the hospital so much of the time, I love that things are able to be switched around to allow for our sadly inconsistent routine we currently have.  Thanks, Aimee and Taylor!  I love this!

So as though my being out of the country for weeks at a time and now being at the hospital and staying in a temporary apartment wasn't enough chaos in our lives, now our formerly-trusty Dodge Durango has broken down.  I was on the freeway, an hour from the hospital and an hour from home, when it decided to go.  There I was, stuck in the middle of a torrential downpour, with a carload of kids and a dayful of appointments to get to, sitting in the car on the side of the road.  

And it turns out it would cost more to fix it than to just buy something different.  Since we really were not fitting very well into the Durango anymore anyway, this isn't an entirely bad thing, but the timing . . . oy.  Now I don't even have a way to get back up to the hospital to visit Micah unless I borrow a vehicle and find a babysitter for half the kids.  And when exactly are we supposed to find time to go car-shopping?  All I want to do is sit in Micah's hospital room, surrounded by my beautiful children.  I really don't want to buy a car right now!  We can't afford to buy a car right now.  I liked our Durango.  I liked our heated leather seats.  I liked not having a car payment.  sigh.  So now we are looking for something (used, of course) big enough for eight passengers and a wheelchair, a stroller, and hopefully a few bags of groceries, as well.  And our price range is pretty low.  We'll see how this goes.  This was really just the last thing we needed right now.  When it rains, it pours.  

And speaking of rain, it has been raining NON-STOP since our plane landed on Friday.  (Well, except one day of snow, but that is even worse.)  And the weather forecast?  One hundred percent chance of rain through the weekend.  Like it's not tough enough on the kids to be cooped up in a hospital room, we can't even take them outside to burn off some energy without them getting completely soaked to the bone.  And Gideon HATES getting wet.  Massive screaming fits if drops of rain touch his hair.  Yikes.  But that's western Washington for you.  I am so ready for some sunshine!  So ready to have a car that works, ready to have my son out of the hospital, ready to get some semblance of routine back into our lives.  

I feel so blessed to have these wonderful little boys, though!  That makes all of this other stuff pale in comparison.  We are together, and that is what is important!