Friday, October 24, 2008

Well. Where to begin?

Ja.son - is doing well. In fact, Ja.son is doing so well, the neurologist feels it will soon be difficult to justify Early Start intervention for him. Not too bad for a baby at high risk for CP. The doctor was quite impressed with Ja.son as a whole, but most specifically, he said that Ja.son's dexterity was remarkable - especially in light of his first observations. He also noted that Ja.son's social and verbal interaction makes him believe that there very well may be little remnants of all of this stuff for the long term (he prefaced it with "although no one has a crystal ball", but still)

Can we all say hallelujah?!!?

Concerns for Ja.son - his eyes. Over the last several weeks, Ja.son has started to cross his eyes somewhat. We have an appointment with the ophthalmologist on Tuesday, so we shall see if the neurologist's prediction of glasses will come to fruition. (probably)

Sh.awn - is doing well...except we now have a preliminary diagnosis of monoplegia in his right arm, most likely from all of the surgeries he had during those very dark days. The good news is that the doctor feels that this is a very mild case, but still. This wasn't exactly what anyone would want to hear about her child.

Prognosis is very good. The doctor was very encouraging about the restraint therapy helping Sh.awn improve the use of his right arm. He suggests we continue to use this therapy several times a day and hopefully we'll see further improvement. I had already decided that I would continue to use the therapy with or without endorsement from the doctor because I have seen improvement in just the short amount of time I've been doing it. It was nice, though, to have someone else confirm that I am helping him by doing this.

Sh.awn was a chatterbox and his usual flirty self during the appointment today. Thankfully, children with mental retardation would not be as animated as he was (based on his thirty years experience) so he ruled out that for Sh.awn.

Can we all say hallelujah for that?!!?

I didn't really feel like that was something that Sh.awn would face, but the confirmation that he should be mentally okay was wonderful to hear.

So there it is.

Is.aac and I talked somewhat about what we were told today (we'll talk more over the days to come). We both agree that we are beyond thrilled about Ja.son. For Sh.awn, while we are not happy about the diagnosis, we both feel in our hearts that this will be something he (and we) will overcome, if not completely, then at least to the point in which is doesn't interfere too much with his overall quality of life. I do believe that, although my fear gets the best of me and I worry about it anyway.

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I was able to exhale the slightest little bit today after this appointment. We are not out of the woods, but I can see the clearing in the not too far off distance. I felt okay, like maybe things will be okay...

and then I was filled with a blinding rage. The anger about all of the stuff Sh.awn went through during those very dark days came flooding back.

What if they had corrected the shunt failure the first time? How much damage did they do by continuing to go back inside his brain over and over? How would it have been different if I had chosen a different hospital and different doctors? What if they would have been a better choice? The list of questions goes on and on.

While it is pointless to wonder how different things would be for Sh.awn if he hadn't had those eight surgeries in eight weeks, I just can't help myself.

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Tonight, bath time was just a little bit sweeter than it was yesterday. Feeling the boys snuggle up against me while we read our bedtime story was just a little more special. Kissing their sweet heads as I tucked them in bed filled my heart with love.

I was able to exhale the slightest little bit while I said goodnight.

I think we're going to be okay.

15 comments:

  1. I'm glad that you got good news at your doctor's visit. Hopefully things progress well for you all.

    Good luck!

    ICLW

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  2. Yahoo!! I'm so happy, relieved, thrilled, and excited for all of you. This is terrific news.

    Now breathe...

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  3. Here from ICLW, and yoh! It certainly looks like you've had a rough road to travel.

    I'm so sorry for everything you and your little boys have been through, and so glad the clearing is within site now.

    Thinking of you all, and so glad the news was overall, good!

    x
    Yvonne
    PS thanks for the comment on my blog!

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  4. That's wonderful news, Stacie! I'm so glad things are looking so positive with Jason, and that the news with regard to Shawn was as good as it was, especially with respect to the mental retardation question. Hooray!

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  5. Best wishes coming your way. Thanks for visiting my blog.

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  6. Stacie - big hugs! I'm glad that you had such a great appt ... And I'm glad to hear about how well the boys are doing. I'm sure that it was hard to hear about Shawn's possible prognosis ... but I think it's wonderful how good your boys are doing and how far they have come! You are such a great mom.

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  7. JEEEZZZZZZZZZZZ I HAVE LIKE 67 ENTRIES TO COMMENT ON!!! But I'm going to just give you one big one here if you don't mind :)
    First off- I am THRILLED about Jason & Shawn's development/diagnosises (is that a word?) I know this may not be helpful and sound sort of twisted to say, but I think that if Jason gets glasses, he will be the cutest, most sweetest thing ever. Not that I would ever want to see a baby or wish a baby to have eye issues, but I just mush when I see little ones in glasses. My niece got them at 4 and after an initial "Oh crap" we all wished we looked that cute in glasses!
    And YIPPI EYAY about the social skills and IT PROBABLY BEING DIFFICULT TO JUSTIFY EI????? THAT IS AWESOME NEWS!!!!!
    Shawn- My little mush- I"m sorry about the right arm issue but what you have been doing with the restraint therapy will hopefully do wonders and give him more strength. I know you still didn't want to hear it but there is a bright side calling your name and this is SO IT!!!!! It's great news- these boys are doing amazing considering what they have gone through Stace- omg they have come so far and are 9 months adjusted? HELLOOOOOOOOO THAT IS AMAZING!!!!! YOU HAVE SUPER BABIES!!!!!!!
    However- your anger and questions towards the hospital are justified and that will never go away. It is not pointless to wonder- it's natural and you have every right. But I'm glad bathtime was extra sweet for you guys :) You WILL be OK- ALL FOUR OF YOU (and however many more you decide to add to the clan!)
    You are a wonderful, devoted, dedicated, patient mother who should be PROUD to see what her hard work has done for her babies progress. It is because of YOU that they have come so far. All in such a short year....hats off to you sister :)

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  8. YAY I am so glad you got good news! You all deserve it!

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  9. That is great news! I'm so relieved for you all!

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  10. I just exhaled. What thrilling, exciting and much needed good news.
    I hope you have the best sleep of your life tonight.

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  11. yeah - you and the boys are ok. You are a great Mom - keep it up!!!! Much love, meme

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  12. Wooo Hoooo!!! So glad you guys are getting good news for a change! For a year that has been spectacularly sucktastic I think that your visit had a great outcome, relatively speaking.

    I can't believe that it has been a year already. That in itself is just amazing.

    I'm guessing this is one year you'll never forget, but wish you could.

    kiss the boys for me.

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  13. Glad you have some good news for Sh.awn and Ja.son. Wow they are incredible little guys to be doing so well.I hope they continue to amaze the Drs.

    I have IVF fraternal twin boys now 27 months old ...they were only one month early OMG I couldn't imagine having 28wk premmies.

    Here from IComLeavWe... (adoption,pregnancy loss, IVF twins)
    My Little Drummer Boys

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  14. pS Happy Birthday Ja.son
    Happy Birthday Sh.awn

    It's 3.22pm Monday 27th in Australia ...
    I hope you have very special 1st Birthday

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  15. I am so happy to read this. Just so happy. Don't know what else to say!

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