Friday, May 17, 2013 Circles...

Friday, December 10, 2010

I am coming full circle (again) with my feelings about Eliah and his progress.  It seems as though the good always outweighs the bad, but there is always something new on the horizon to complicate Eliah's situation.  We get two steps forward, one step backwards, and a couple to the side.   And I feel like I need to write this blog post, not just as an update on Eliah, but as a release for my feelings.  I'm frustrated.

In the past month and a half, Eliah has had two seizures.  Normally we are taken by ambulance to the ER for them to stop the seizure.  But these past two times, Eliah has stopped within five minutes.  We still call an ambulance, and we give him medication and put him on oxygen, but he came out of the seizures each time without going into another one.  That is HUGE progress.

The bad part is, in the past month and a half, Eliah has lost a lot of his motor skills.  He has a great deal of difficulty when rolling now, sometimes not even rolling at all.  He is only able to use his left arm occasionally.  He has not even been able to bring his hand to his mouth, as he has for the past 2+ years. 

This past February, I posted a video of Eliah using a talk box in therapy.  He presses a large button to play a recorded message.  He's been doing that for a year now.  Unfortunately, just in the past month, he has lost the ability to reach and press the button.  You can see in his eyes that he wants to, he just cannot get his body to move.

In addition, Eliah's muscle tone has increased.  His leg muscles are getting extremely tight, and he is developing what's called "wheelchair legs", where he cannot straighten his legs while in a sitting position.  This will hinder his ability to stand.

Eliah has also lost the ability to wear his orthodics (magic shoes), because just wearing them leaves bruises and pulls on his muscles too much.  Therefore, he has been unable to use his stander at all, further hindering his possible standing/walking one day.

I talked at length with his Physical Therapist today, and she suggested that we try a medication called Baclofen to help relieve some of the tightness in Eliah's muscles.  And it could really help him.  The downside is, that because he has no torso control or strength, it will make it harder for him to learn to sit up.  But I guess we will cross that bridge when we get to it.

In addition, his therapist wants to give his Physical Therapy a "break" in the spring.  Meaning, he won't get any physical therapy for approximately three months, then go only every two weeks.  And from the impression I got, she's been working with him for three years now, and his progress is minimal (and some backwards), so he may not benefit any more from a weekly therapy session.  This was very discouraging to me.  I guess in my opinion, I feel that we need to do EVERYTHING possible to get him working right.  I was hoping to go two times a week, not the other way.  But, as his therapist said, plans can change.  Hopefully they do.

On a positive note, Eliah's blood pressure has been down to normal levels with medication.  He had an echo cardiogram at the beginning of November to determine how much his heart was strained by the hypertension.  We are still awaiting the results of that.  The bad news is, Eliah still has his heart defect.  The cardiologist was hoping that it would resolve on it's own as he grew, but it's still there, and most likely the cause of the hypertension.  Normally, the course of treatment for his defect is to operate, but because Eliah has Hemophilia, they are really at a loss of what to do.  They don't want to cause new bleeding, especially around his heart.  We'll see what they say though.

More good news is that Eliah is sleeping almost 8-9 hours every night.  There are occasional hiccups, but for the most part, he is being consistent.  The new bed is working like a champ too.  I like that it's big enough to sleep in there with him if he's having a bad night.

The kids are doing awesome with the separation.  Natalie is testing limits at both houses, which is expected.  But I think she always tested limits.  Ha! And Eliah loves having the change of scenery and toys.  It keeps him from getting bored.

And you can see by the pictures, the kids are growing like crazy.  I can't believe that Eliah is almost as tall as Natalie.  She is a normal-sized 6yr old, and Eliah is ONLY 3!  That kid is going to break me one day.  I better work out harder in preparation.  :)

I know we have bad days, both Eliah and myself.  Sometimes he's in pain, and he just cannot tell me what's wrong.  Sometimes I do everything I can possibly do and it's still not enough......  And sometimes there are days we just laugh, love and dance.  I live for those days.

That's pretty much it.  Eliah is better, worse and the same.  I love him like crazy.  And I'm so very proud of BOTH of us for being so strong. 

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