Everyone Check In

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wishing4agirl's picture
Joined: 09/11/03
Posts: 917
Everyone Check In

Just thought everyone should check in with how they are doing. Are you ready for the holidays? Anything new? Update us.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

We are doing great. Eli has recovered faster this surgery with (so far) no complications (they can show up late, even YEARS later). We put up our tree after we got home from the hospital so Eli could help decorate and they did a good job. We've actually noticed improvements in Eli since surgery. They are not one's the doctors were looking for but they are very noticable. For one he's able to focus now and concentrate. That was VERY difficult before. The SLP noticed, as well as our neighbors and uncle. So it's not just me. And you know how kids will ask you for something and you tell them in a minute only for 30 seconds later they ask now? Well Eli never did that before. He forgot the moment he turned his back to you what he asked. Now? He asks for things over and over like he should be. Probably because he can now focus. He still has memory problems but NOTHING like they were before. So if we've seen these big of improvements now I can't wait to see what happens after some time as passed and his brain has been given what it needs for longer. We also went to an allergist the other day. Eli is allergic to anything sticky you put on his skin. It use to be "just hives". They didn't itch or hurt or anything, they were just there and didn't look very pretty. Well now they burn, and hurt, and itch, and affect almost his entire body. I didn't know if it was something that could later turn into anaphalactic (sp?) shock or not. After going to the allergist it is something that WILL eventually do that. Thankfully he doesn't get too many cuts requiring bandaids. But now we are having to do a lot of research to find the common ingredients in the adhesives and come up with a plan on how to deal with it. It will be a slow process, but I'd rather deal with it now than wait until it gets so severe he can't breath.

We will be doing Christmas at our house. I don't think I would have minded traveling but Faith is having a cyst removed from her ear on the 27th. It's not a big deal, but I don't want to return home only to turn around and deal with that. Maybe next year we will travel.

gardenbug's picture
Joined: 03/12/07
Posts: 2025

The last year or so has been a real tough one for me, the Nana, with lots of medical stuff going on with friends, neighbours and family issues. I don't want to become a drama queen, but I'll just say the list is long and my heart goes out to everyone.

I am quite content that we are spending Christmas as a twosome and saving our travel until January and February. I hope for quiet time to knit by the fire!

Joined: 11/28/06
Posts: 848

Tomorrow is Alana's field trip to Epcot to celebrate holidays around the world. We are giddy over it! The Hyomax helps to ease her pain and I'll be with her in case of any other needs she has. Saturday we're surprising the girls and taking them to Busch Gardens' Christmas program. It is only for a few hours in the evening and we'll bring the stroller so Alana doesn't have to walk much. I can imagine she'll be pretty tired.

Christmas Eve we spend with my in-laws (presents and dinner), Christmas morning at my Mom's (breakfast and presents), Christmas day back at my in-laws (lunch with extended family) and then back home to nap and watch movies. That's the annual routine. The 26th will be Alana's MRI but since there's no prep at home that shouldn't be a problem. If anyone has any tips to help me prepare her I'd appreciate it. I've never had an MRI so I don't know what to expect. I've been told she'll have to drink the contrast, like she did with the CT scan, and that she'll need to lay still for 60 minutes. Sounds lovely.

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Nana - funny you mention knitting by the fire. Heath's mom (I don't remember her username on here and I only know her real name LOL) was talking about crocheting (different than knitting but it reminded me of the knitting) and gave me some tips. Since we discourage my parents from buying us presents I told my mom to bring me one of her needles and some old yarn she has laying around she's not going to use. So sorry to hear about all the health problems friends and loved ones are going through.

Tanya - Making plans in case she needs them is always best. That's why we have our fancy stroller. Hope your families don't live too far away. I wouldn't be able to do all that since my family lives to far away from each other. I don't really have any tips on the MRI because Eli is always knocked out so he can't eat and they inject the stuff instead of him drinking anything. And they are always on his brain and heart areas. I might practice with her in laying still. I've had an MRI and they let me out every 10-15 minutes. Will they do that with her?

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Angela

I can't say how happy I am to hear Eli's update. I've been stalking periodically hoping for an update, and this is better than I ever could have imagined. Please keep us posted on Eli's progress. I was going to be thrilled if they could just cut down on his episodes...

gardenbug's picture
Joined: 03/12/07
Posts: 2025

Angela, have you seen Threads & Yarns! ?
We need some action there!

Joined: 05/05/04
Posts: 435

Tom had his annual visit with his cleft team the other day and everything went well - he passed his speech eval (his speech isn't perfect but he's 5 Lol and he passed his hearing test.

We stay home on Christmas but my parents come over in the morning for the kids to open presents, then they go home, relax, and come back for dinner later (we only live a mile apart). I think we're doing Christmas with Dan's family the weekend after Christmas. I'm behind in my knitting - I'm making a brioche orange & blue (Syracuse) scarf for FIL that I started yesterday and I'm learning brioche as I go. Smile

sarahsunshine's picture
Joined: 11/29/06
Posts: 1462

Update on Skyler - Since his double valve replacement and aortic arch graft, Skyler has continued to do well. Just this week he made the Basketball team - an unheard of achievement since he would never previously consider sports. He does tend to use illness as an excuse for things, but his mother FINALLY caught on since the teachers at his parent teacher interview specifically asked what he should allow because of Skyler's health issues - and the response from everyone was "Skyler no longer has health issues. His surgery was successful and has FIXED the issue." Skyler was most disgruntled to have his parents tell his teachers that in front of him ("uh oh! there goes my made up excuse"). So, overall, he is learning what it is to be "normal" rather than have excuses to lean on for everything.

He will always have hearing issues, but that's just an issue of hearing aids unless Skyler, himself, decides to go for surgery when he's older.

By the way, did anyone else see this cool video?
https://www.facebook.com/photo.php?v=227366017336828

wishing4agirl's picture
Joined: 09/11/03
Posts: 917

Sarah - that link is so sweet. Yeah we are really happy about how everything is going so far. I'm a bit concerned with how tired he is and now he has the dark circles under his eyes. Initially he wasn't tired, but today he wanted to go to sleep at 6:30. Growth spurt? Not going to panic yet.

Nana - I'll check it out.

Natalie - that is great about his speech. Eli is getting his annual testing on January 2nd. I've noticed things slide in that area, but right now his therapist and I are both accrediting it to the fact that he didn't have speech for like a month. And now we are going another 3 weeks until his next session (holidays and our schedule). And even better about his hearing test. Woohoo!!!

Joined: 05/05/04
Posts: 435

What a great update about Skyler!!