So we have not had any alarms during the night lately. Alex does seem to need the O2 when he is awake more than ever though. But that is okay! Yesterday Steve came to Alex's OT/PT appointment with us. Alex had a good time kicking blocks and bugs onto his Dad. We took some great video. Alex also has a yeast infection in his penis and thrush in his mouth. We started treatments yesterday and hope that his swallow will be better when the thrush is gone.
Yesterday was also spent in a pretty lousy mood. Steve and I could not stop arguing with each other. I finally left to have a beer and burger with a good friend that was over for a visit. Steve really warmed up when we returned with a burger for him too. Then we watched "How the Grinch Stole Christmas" and then bedtime.
Okay, tomorrow we hope to take Alex to the Make-A-Wish Holiday store at TCH. I hope that we can get him there and his new power chair. I know he would prefer to be able to move around by himself as he does his Christmas shopping. Wish us luck!
So the 72 hour notice has been joyfully dismissed! Alex's stats are good as are his spirits. My issue with him now is that he wakes up everyday asking for some new video, game and/or gift. I so want him to be grateful for the multitude of toys he has as well as the friends and family that surround him with love. This is such a struggle for me. I get so frustrated with him and then at myself for being short with Alex. Somehow (Nonni, friends, dad) he ends up getting what he has asked for that day. So my efforts are to no avail and it starts all over the next day. I know I need to let this go, but our wallet would appreciate the break!
I wanted to write about Zoe Grace for a bit. She is such a joyful child (except when her nap is cut short). She starts the day with "Hi Mommy, I'm awake now!" that just makes the morning bright when accompanied by her smile! She is actively potty training and is quite successful for everyone else but me (what's up with that?)! I'll take progress anyway I can get it here though! She loves playing games with Alex on the Wii (even if she uses the wrong controller). And the Teenage Mutant Ninja Turtles are still her favorite heroes. If Alex's alarms go off, she always asks "is Alex okay?" over and over until things stabilize. She is very empathetic and loving toward Alex. She is also a great two-year old, testing her boundaries and such. She keeps us busy!
Okay, I have a list of chores to do today. I really want to go get our Xmas tree today! We have friends that want to bring Santa to the house. I think this year's tree will have lots of Spider Man ornaments on it!!!
Love and many thanks for the powerful prayers. Keep it up!
G
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6 comments:
Gwen,
Thanks so much for the update--it is nice to see that Alex has stabilized, and I am hoping that he will be able to enjoy some holiday shopping in his power chair. This weekend will be great for holiday decorating, with the wintry weather we will be getting!
~Annie
Hi, Gwendolyn, i appreciate you sharing your struggles with all of us, and it makes me feel a little bit closer to you all from way up here in seattle. i am happy the notice has been dissmissed and Alex has a chance to get out and do some Christmas shopping. Please know I am always thinking about you and sending prayers.
love,
joy
I'm so glad to hear this news! I will call and see if you guys are up for visitors this weekend. Riley lights up when Zoe arrives at school and Veda asks about Alex, so it would be nice to visit if possible. And I'm always willing to drink beer/wine if you're in need of a drinking partner! Enjoy the day.
Chantell
Great news, Gwen.
It's great hearing an update that is so similar to one that I'd be giving.
(With Mattie, it's candy, not presents, and Mitch is the morning sunshine for us, though potty-wise he's not successful for *anyone* but himself. He takes his own diaper off when he needs to go. Half the time, we find business in his potty, and half the time, we find a puddle someplace. He's VERY quick about it, so it's rare to find/spot him in-process, but we're lucky in that there have been no stools left about (that we're aware of)!
Have fun Christmas shopping, and with the decorating too. We'll be doing ours this weekend.
-Scott (Suzan, Mattie & Mitch)
Oh Gwen I am delighted you all had such a wonderful Thanksgiving together!! You're all such a source of inspiration to so many. Please feel my prayers and holiday hugs.
Love
Melinda McGrath (scotts sister)
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