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  #1  
February 12th, 2008, 10:00 AM
fiefer87's Avatar Mega Super Mommy
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Hey

I was just wondering how things were going. Were you able to get the MRI and the VER set up? Any other news? I hope things are going well. Keep us posted.
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  #2  
February 12th, 2008, 02:59 PM
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Quote:
Hey

I was just wondering how things were going. Were you able to get the MRI and the VER set up? Any other news? I hope things are going well. Keep us posted.[/b]
Thanks for askin. Nothing's been happenin really, STILL no MRI date, peds chasin it up, but its beginnin to seem like he too needs chasin up! The consultant opthal sed they wont do VEP til shes a bit bigger, maybe a year's time. Got various apps comin up this month and next but not sure what they're all for really.

Honey's come on leaps and bounds with her interaction, still no eye contact but chats more, laughs etc. She's playin more now too, nearly sits and rolls (she goes round in circles on her back atm and nearly tips herself over onto her front but can't quite get that arm in position! )

Feelin a lot more positive about the whole situation now.

How are you all??
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  #3  
February 13th, 2008, 03:21 PM
fiefer87's Avatar Mega Super Mommy
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We're doing really well. Alexis is coming along in school, but is still having major major difficulties with her speech. It is driving everyone crazy. I hope all the appts go well, I will right more a little later, just pressed for time ATM.
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  #4  
February 18th, 2008, 07:45 AM
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Quote:
We're doing really well. Alexis is coming along in school, but is still having major major difficulties with her speech. It is driving everyone crazy. I hope all the appts go well, I will right more a little later, just pressed for time ATM.[/b]

I'm sure u must be used to it but it all seems so daunting to me, this is what i have coming.

dp said to me over dinner the other night "do you think she's going to be happy?" i don't know if she will or not, she's never known any different. She's happy now but will she be if her life's a struggle, if she's bullied, if she wants to get married, if she can't have kids (can they with their hormone trouble? i don't know.) if she can't have a job, i really feel sad for her sometimes. Will they have normal life expectancies?

It's just so hard sometimes. I feel like i want another baby, honestly, as kinda replacing what i don't have in H. It doesn't mean i love her any less, but it feels like i've lost out too (selfish I know, and hard to admit). I don't know if its a good idea yet, dp doesn't think so.

Sorry, this is a bit deep.

H had her app, it was an intro to the community ped really. He didn't have any info on her so i had to fill him in. She really liked him, was shreikin and gigglin at him and tryin 2 roll off the bed! She's def come on in the last month or so. Our normal ped called the other day to say he'd (finally!!!!) had the results from the tests in Dec, that she needs the thyroxine and hydrocortisone so he can now book the MRI, should get a date thru ne day. The community ped did say however that he'd expect her to be usin her right eye more than she is. Then again he doesn't know her or how much improvement she's made lately or i suppose the opthal mite have missed ONH in that eye.
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  #5  
February 18th, 2008, 10:20 AM
fiefer87's Avatar Mega Super Mommy
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I know its really daunting and very scary. I've just had 5 years to start dealing, but I still ask all those same questions you guys do. Will she be happy, can she get a job, will she get married, will she have kids (and yes even with the hormone deficiencies she can still get pregnant. They will give her synthetic hormones to develop secondary sex characteristics (if she needs them, she may not) and make her get her period and such. Then she would undergo something like in vitro fertilization or other assistive reproductive technology) so don't give up there. And as far as Iknow, life expectancy is normal.

And I definately understand the feeling of wanting more and that you are missing out on so many things, because face it, we are. They are not a "normal" child and things happen diiferently for them. Does it mean we love them any less, absolutely not. But as a mom, this is not what you expect to happen to your kids and thats rough. For me it was a little easier, since she's our only child. We didn't have a developmentally normal child to compare her to, and I think that really helped us.

I am glad that Honey's reg ped finally called back. It sucks that she needs the thyroxine and the hydrocortisone, but that wasn't anything you weren't expecting (she's been on both for awhile right, or were they just talking about it? I am confused now, I 'll have to go back and reread our earlier posts, lol) Alexis is on both of those, though her hydrocortisone is only in times of stress. And hopefully the MRI will be scheduled in the next few days.

And please, please don't listen to the comm ped about her right eye not getting any better. Vision develops until the kids are at least 2, and when Alexis was first diagnosed, we were told only light and shadow, but now her vision is about 20/150 with her glasses (shes nearsighted, too). I think the docs tell us dont expect any more because one it prepares us if it never gets better and 2, any addition sight they get is a huge blessing. But, keep praying and working qith Honey to develop those vision skills. That will help more than you can imagine right now.
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  #6  
February 18th, 2008, 04:27 PM
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Cheers.

She's been on hydrocortisone 3 times daily and thyroxine once daily since nov. i chased up results at start of jan, unofficially, the ped hadn't had the official results til now. As for the comm ped i think its jus cuz e doesn't no her, cant c her progress. Its hard cuz my friend's little one is only 13 hrs older than H and she'ss normal, it breaks my heart wen they're together u can really c the difference.

How much will the MRI actually tell us about MR, if she is/will be wen will we no how bad it is? or is it jus a case of waitin to see?

Wen do you think you'll have another baby?
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  #7  
February 19th, 2008, 12:21 PM
fiefer87's Avatar Mega Super Mommy
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Well, the MRI will be able to give you an idea about wether to expect it or not. One of the other classic signs of SOD besides the absent septum pellicidum is abnormalities in the corpus callosum. This is a structure where all the neurons travel through. If this is thin or underdeveloped, or out of place, you would expect some level of MR, though you won't be able to know until they get older. They will have to undergo IQ testing, and most places begin that at 3 when they transition from early intervention to the school district. Alexis had her first one done at 3, and they couldn't even score her, and she had 2 more this past summer and both put her around 46. I don't really agree with those because she is severely speech delayed and does have auditory processing problems, so that could play apart in it. Plus the neuropyschologist we went to said she should be able to have other forms of nonverbal communication to answer the questions, and I am thinking, well first of all, she's autistic and most autistic kids don't process those nonverbal commincations well and second of all, she's VI, so a lot of those go unnoticed to her, so ***? We wonb't be going back to him again. So some of that is a wait and see game, but you'll know more as she grows, even before any eval is done.

As for more kids, my dh will graduate from college in January 09 (well he finishes the semester in Dec of this year) so probably we'll start TTC sometime next year. PLus my IUD has to come out in the summer of 09 (that will be my 5 year mark), so sometime next year would be my guess. We need to decide if we're going to do an addition to the house we are in now or buy a new one (we only have 900 sq ft, so a bigger house is a must). It was a great starter home and we've been in it for almost 3 years now. It definately was great for us.
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  #8  
February 19th, 2008, 01:42 PM
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OMG and these ppl are supposed to be educated! Good job u no ur stuff! The comm ped asked if i was a nurse cuz when i was filling him in on Honey's life so far I knew what cord prolapse was! Its obv that I'm gonna know what happened!! Spose it shud b a compliment!

I knew wat the MRI can show just not when it'd be picked up if she is MR (dont wana say it aloud!)

We moved recently, from tiny 2 bed. It was fine for two and a baby, eventhen maybe a bit camped! Now we rent a massive 3 bed and all sleep in the same room! Gonna move again in May, miss our old area. Made loads of friends and as I dont have much family they really matter to me, they're my support, my shoulder to cry on! lol!

What's ur dh studyin? What's he do/ going to be?
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  #9  
February 19th, 2008, 02:18 PM
fiefer87's Avatar Mega Super Mommy
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Well, the MRI is not life and death in regards to the MR, it will just give you a clue as to whether or not to expect it, so even if the corpus callosum is thin or underdeveloped, dont stress it. Its funny too, about the comm. ped asking if your a nurse. You have no idea how many people are amazed that I can recite Alexis' entire medical history, understand what everything means and how it relates to her in real life, all without any notes. I mean come on, this is my child, she has a very complicated medical diagnosis, and what, I am not supposed to learn all I can about it? I mean yes, I am sure there are parents that don't have a clue when it comes to things like this, but honestly, I dont strike people as the type who doesn't care. I never have.

Hubby is in an automotive technology program and when he graduates he will be an auto mechanic. He's also going to be ASE (Dont remember what the initials mean, but they are they liscencing board for auto mechanics here) certified in multiple areas, which will give him better job oppurtunities. He loves it and is so excited that Alexis is a gear head. She absolutely loves anything to do with cars, trucks, motorcycles, the works.

It sounds like your apartment is bigger than our house lol, but I definately understand why you'll be moving back to your old neighborhood in May. You definately need that support system, I have no idea where I would be somedays without the support system hubby and I have. Probably either locked up in a looney bin, or running the streets screaming my head off, lol.
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