He's not sitting on the floor, he's in my lap. So that means he is in a seated postion with his feet already on the floor. So it's a "cheat" for an average baby, but for Andrew - THIS. IS. AWESOME! He's getting stronger every day! He has an appointment on the 15th with a pediatric orthpedist to see if he needs orthodics - like shoe inserts or ankle braces. He's getting more comfortable in a standing position and during his OT on Tuesday, he did a lot of excersizes in that position. Ot J also gave us some homework to do on his belly and we see PT H tomorrow morning for her session with him. The process has started!
Our life as a family coping with Duchenne Muscular Dystrophy.
Little's Life
Thursday, March 31, 2011
Thursday, March 17, 2011
Poke in the eye with a sharp stick?
So first, let me apologize for those of you I haven't been very available to lately. I've been wrapped up in my own business for the past few months and haven't really had anything left over to give anyone else. Unfortunately it's going to stay this way for a bit longer, but I really am sorry that I've been detached for a while. Ashley, I've talked to you, what --- twice? since around Andrew's birthday in January? Brooke, I know we were supposed to talk like 3 weeks ago but you seem to be as preoccupied as I am right now. I got a new phone, so I'll be able to answer more often (and walk around in my house without being disconnected instead of finding that one spot in the kitchen and standing perfectly still). Gran, I know you don't have the internet and won't ever read this, but still - I'm so sorry I haven't been able to listen as well as you needed since your surgery and I'm sorry I wasn't able to come down and help you. I'm trying to get there soon, I swear!
Ok, you all know about Little's stuff - therapy still hasn't started, btw, we've still got another week to go - but he's not the only thing that's been wearing me own lately. We just had the rug pulled completely out from under us by (anyone wanna guess?) THE ARMY. Oh Army, how I loathe thee. When we moved here 2 years ago, we were told we'd be here a minimum of 3 years, possibly for all 5 that Mr had left. WELP, that was a big fat lie, of course. We were just told that Mr is being assigned to PSB in..................FORT BEVOIR, VIRGINIA. VA!?!? SERIOUSLY???? And his report date is in early July. I feel like I've just been punched in the face. Not that there's anything wrong with VA - it's beautiful from what I can see on the internet - but bc Andrew is just now getting help for his delays. Right when we start therapy, they want to send us to another state where he will have to start the evaluation and referral processes all over? It could mean as much as a 6 month gap in his therapies! He's already 8 months behind in his gross motor skills - a delay like this could be completely detrimental to whatever progress we will have made in the next 3 months. Plus with that timeline, his neuro testing will be interrupted and pushed back up to a year from his initial referral in January. I'm just sick at the thought of delaying him even further and not getting a diagnosis (if there's one to get) from the neurologist for maybe another year. There's already a 6 month span between his first neuro referral and the date of his first consult in June. Having to start that process all over? You've got to be kidding me.
Besides what it would to Little's development, that gives us 3 months to sell the house. We never would have bought one if we had known we'd only be here for 2 years! VA is expensive, so we'd most likely live on post - living on post means no BAH (housing allowance for you non military folks) and no BAH means how the hell will we pay for our mortgage if the house doesn't sell? If we choose not to live on post, then how the hell will pay rent in VA AND our mortgage on this house? OMG I AM SO PISSED. Plus by the time we are done in VA and get to finally leave the army, Little will be 4 years old and barely know any of his relatives. VA isn't exactly a quick car trip away. I can't believe we'll be so far away from our family. I won't have my Don and Donna to count on! I'll have absolutely no one when Mr is away (which on average is about 1/2 of every month in PSB). I'll be a married single parent for 3 solid years.
Mr and Mr's Chief both spoke with the douchelord who is in charge of assignments (henceforth referred to as Assignment Douche - yeah, I said henceforth) and explained to him about Andrew's condition and asked if he could send someone else to fill the PSB spot in Belvoir. Assignment Douche said "Hell no. I don't give a rat's patootie about your developmentally challenged son or the neurological disorder that may be causing it or the financial strain a move to VA would put on you or your family. I'm glad your child might regress even further during the 3-6 month gap in his treatment and I hope there IS something wrong with him neurologically that ends up being too far advanced to correct by the time the VA docs can get around to checking him out. You can go fork yourself for all I care!" Ok, it might be possible that those weren't his exact words since I wasn't there to actually hear them myself, but that's definitely what he meant.
So now we are in the process of getting our application for Compassionate Deletion of Orders sent off. If approved, we would get to stay here for at least another year (YAY!) but it would mean that Mr would be off to the Sandbox yet again at the end of the year (BOO!). SO - move to VA and screw up my child even more or stay here and raise him alone for a year for the second time in short little life. If MR deploys again this fall he will have missed 21 of the 36 months Little will have lived through by the time he returns. So basically we will be force fed 1 of the 2 different handfuls of horse manure that the Army has designated for us.
And that's why I've been to preoccupied for everyone else lately. I have so much on plate right now that I just don't have any energy left over for others. And I'm so sorry. I'm working on it, I'm praying for more patience and more strength. I've got our very last pre-therapy meeting tomorrow with PT H and OT J and will finally get to schedule his weekly sessions! 2 weeks after the application for Compassionate dismal of orders is sent in, we will have our answer and know whether or not it's VA or Iraq. Man, you know something has to be rock bottom bad for us to be willing to go through our 3rd deployment in 5 years rather than move to Ft Belvoir.
Ok, you all know about Little's stuff - therapy still hasn't started, btw, we've still got another week to go - but he's not the only thing that's been wearing me own lately. We just had the rug pulled completely out from under us by (anyone wanna guess?) THE ARMY. Oh Army, how I loathe thee. When we moved here 2 years ago, we were told we'd be here a minimum of 3 years, possibly for all 5 that Mr had left. WELP, that was a big fat lie, of course. We were just told that Mr is being assigned to PSB in..................FORT BEVOIR, VIRGINIA. VA!?!? SERIOUSLY???? And his report date is in early July. I feel like I've just been punched in the face. Not that there's anything wrong with VA - it's beautiful from what I can see on the internet - but bc Andrew is just now getting help for his delays. Right when we start therapy, they want to send us to another state where he will have to start the evaluation and referral processes all over? It could mean as much as a 6 month gap in his therapies! He's already 8 months behind in his gross motor skills - a delay like this could be completely detrimental to whatever progress we will have made in the next 3 months. Plus with that timeline, his neuro testing will be interrupted and pushed back up to a year from his initial referral in January. I'm just sick at the thought of delaying him even further and not getting a diagnosis (if there's one to get) from the neurologist for maybe another year. There's already a 6 month span between his first neuro referral and the date of his first consult in June. Having to start that process all over? You've got to be kidding me.
Besides what it would to Little's development, that gives us 3 months to sell the house. We never would have bought one if we had known we'd only be here for 2 years! VA is expensive, so we'd most likely live on post - living on post means no BAH (housing allowance for you non military folks) and no BAH means how the hell will we pay for our mortgage if the house doesn't sell? If we choose not to live on post, then how the hell will pay rent in VA AND our mortgage on this house? OMG I AM SO PISSED. Plus by the time we are done in VA and get to finally leave the army, Little will be 4 years old and barely know any of his relatives. VA isn't exactly a quick car trip away. I can't believe we'll be so far away from our family. I won't have my Don and Donna to count on! I'll have absolutely no one when Mr is away (which on average is about 1/2 of every month in PSB). I'll be a married single parent for 3 solid years.
Mr and Mr's Chief both spoke with the douchelord who is in charge of assignments (henceforth referred to as Assignment Douche - yeah, I said henceforth) and explained to him about Andrew's condition and asked if he could send someone else to fill the PSB spot in Belvoir. Assignment Douche said "Hell no. I don't give a rat's patootie about your developmentally challenged son or the neurological disorder that may be causing it or the financial strain a move to VA would put on you or your family. I'm glad your child might regress even further during the 3-6 month gap in his treatment and I hope there IS something wrong with him neurologically that ends up being too far advanced to correct by the time the VA docs can get around to checking him out. You can go fork yourself for all I care!" Ok, it might be possible that those weren't his exact words since I wasn't there to actually hear them myself, but that's definitely what he meant.
So now we are in the process of getting our application for Compassionate Deletion of Orders sent off. If approved, we would get to stay here for at least another year (YAY!) but it would mean that Mr would be off to the Sandbox yet again at the end of the year (BOO!). SO - move to VA and screw up my child even more or stay here and raise him alone for a year for the second time in short little life. If MR deploys again this fall he will have missed 21 of the 36 months Little will have lived through by the time he returns. So basically we will be force fed 1 of the 2 different handfuls of horse manure that the Army has designated for us.
And that's why I've been to preoccupied for everyone else lately. I have so much on plate right now that I just don't have any energy left over for others. And I'm so sorry. I'm working on it, I'm praying for more patience and more strength. I've got our very last pre-therapy meeting tomorrow with PT H and OT J and will finally get to schedule his weekly sessions! 2 weeks after the application for Compassionate dismal of orders is sent in, we will have our answer and know whether or not it's VA or Iraq. Man, you know something has to be rock bottom bad for us to be willing to go through our 3rd deployment in 5 years rather than move to Ft Belvoir.
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