Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
10.30.2007
BOO
I have a very bad habit of comparing where we are today to where we were last year at the same time. I don't know why I do this. I am not proud that I have this nasty little habit. It's not that I am reliving the past or hanging out in our past. I think I do it so that the past is the past and I can wallow in how great our present is.
Undoubtedly, I have compared this past week to the same week last year. All I can say is - paperwork was being prepared by our nearest mental ward for my admitance.
Ivey went to her trach clinic last Friday, just one day shy of her 1 year anniversary with her trach. (It was also one day shy of Georgia's awesome victory over Florida...Go DAWGS.) As I told Cammie on our way to Atlanta to Scottish Rite, we were praying for good news. That is exactly what we got!!
Come this Spring Ivey might get her trach out!
Now it is great news, but it will require a lot of hard work on Ivey's part. In the next three months, she must accomplish wearing her passy miur valve all day. Then if she accomplishes that she can begin cap trials. If that is successful, she must pass sleep studies. (I'll explain all the terminology later.) With a lot of hard work, TLC and extra prayers, she can do it. I just know she can!!!
Now back to this same time last year. Ivey was in the PICU at Scottish Rite. The sweet nurses there dressed Ivey as the green Tellatubby. So sweet and I cannot find one picture to show you. Anyway, as sweet as it was, it still wasn't the same as being home and our holiday season last year was tough. So tomorrow will officially be Ivey's first Halloween with her brothers! I would like to say I was creative with her costume, but no, not so much. Her brothers and Dad had more say so in her costume than I did and I am not about to rock the boat. I seriously doubt it will suprise you when you see her.
As excited as I am about tomorrow and kicking off our first holiday season with Ivey home, my heart aches for sweet Ashley and Trish. They were many many many miles from their home away from their family last year- just the two of them. Again this year they are back in Omaha. So please send them your love and encouragement. I can not begin to imagine being in that same place scared and uncertain again this year.
Happy Halloween-
Gwen and Ivey
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5 comments:
HaPpY HaLlOwEen!!!
I am big on dates and anniversaries too...not sure why. But I like to compare where we were to where we are. I do this a lot with my weight too...
Can't wait to see sweet girl's costume!
♥
What wonderful news about the trach! And I know Ivey and her determined self can do it.
I don't see anything wrong with comparing where you are now to where you were a year ago. Don't you find it encouraging to see how much progress she (and you all) have made? That's what keeps me going sometimes...knowing that we do make progress and that we are growing through all of this.
You're so encouraging, Gwen. And God has blessed you tremendously.
I do the comparison thing also. Last year at this time I was walking in shock having learned my son was going blind and trying to convince myself my 7 year olds eyes were fine; the signs and symptoms were my overactive imagination. This year I'm running to keep up with both boys, as they continue their lives with little to no vision.
Exciting news on the trach!! We know Ivey can do it! And we'll pray for any extra strength she may need!
Happy Halloween!!!!! I do the same thing Gwen. I always looked back when Skye was here to see where we were the year before. I still do it now.
How exciting about Ivey and the trach!!!! It is wonderful to come and read your blog and see how she is thriving!! I have always said the power of prayer is a miraculous thing and Ivey continues to be in my prayers everyday.
What a blessing to have her home this year, doing so well, and to be able to go out trick or treating as a family, making new memories. I hope the boys and Ivey have a great time tonight.
Can't wait to see pics of your beautiful girl in her costume. As always thank you for sharing your beautiful precious Ivey with us.
God Bless with love and hope always,
Tamm Mom to Angel Skye
Hi friend...
I also like to see where we have been in our journey and ENJOY the present! God is good.
I am so excited to hear of the great news of what the future may hold for sweet Ivey!! Every step of the way, know that a "blogging" friend is praying...
And about getting back to you about the "beefing up" of Ez Man...well, he is now 20 pounds!!! That is so big for him! :) It has been about 3 weeks now that he has been on a feeding pump and getting Pediasure for 12 hours straight...his pump is portable and easy to bring along...he gained 2 pounds in 3 weeks! His overall state has been more alert and content, I think cause of how slow he is getting his food...I am happy, of course our goal is to get him eating by mouth..but baby steps is what we are doing :)
OK, well, as far as any "tricks" I have learned, well, for now the pump is the best one I have :) maybe you are still using one already??? I am not sure...
Praying for strength for you Mamma and for endurance as you encounter every day...
Love ya,
Liz
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