Update on my Kaitlyn

[pmsmom]

I am choosing not to think about future problems but focus on the present blessing.

This is great advice!

I will try to remember to take one day at at time!

Marian

[pmsmom]

I'm running on sleep deprivation. Tracy

Dear Tracy,

Post when you can--right now take care of you and your dd.

We love the updates, but don't worry about us right now.

Just know that we are here and thinking and praying for you all!

Marian

[pmsmom]

I am sorry you all are having such a hard time. I will tell you that every day for us meant a huge improvement. I was so scared when we were getting ready to go home and then when we got home things improved alot. I think that alot of getting better is their will. When Katelyn decided to get up and walk and try to do things, the improvement began. I guess this is where its different for all kids. She had alot of painful bloating but no stomach upset. I would think that the stomach upset is probably really painful so she probably just needs time. I will be praying for you all and give her our get well wishes.

Sharon

Sharon, I'm glad to hear that your Katelyn is doing so well!

Marian

[alwayzsomethin']

We're home....

Hi all! Kaitlyn did get to come home on Wed. 2/18. So much anticipation, and joy, yet butterflies for me. We had an hour drive, so it was a little rough for her on the way home. She kept yelling at her dad to "take it easy!" Her spirits did really lift, when we pulled in the drive. Kaitlyn visited with her brother when he got home from school for a while, then he was such a darling to go next door to his grandpas, so we could take a nap. We all slept for 3hrs! Kaitlyns been doing really well, feeling more like herself every day. I told Sharon in another thread, we cheered on her 1st real bm. With all those problems, this 1st was another hurdle she got over. She did about give me a stroke this morning, though. She was still in bed sleeping, while I was in the kitchen with my son getting him ready for school. With no warning, she comes strolling in the kitchen all by herself I haven't let her walk by herself yet, w/o someone being there just in case! This is what scares me about her. She is starting to feel better, and doing things hastily. As I have mentioned before, she is always rushing things. We are constantly reminding to slow down. I guess the positive is that she can move freely with no pain, but I can't help to think she is doing some damage, or that the bone won't fuse due to excessive movement.

Again, I can't thank you all enough for listening and supporting! I feel like you all are family! Tracy

[pmsmom]

Glad to hear she is home! I can understand how you must've felt when she came strolling into the kitchen! Yikes!

In a way, I guess we're kind of like family. I know that I've gotten more support here b/c you all have walked down that road. I don't think my friends and family understand the magnitude of this surgery--sometimes trying to educate them gets very frustrating. My mom (82) for example, God bless her and I love her, but her thing right now is where did this come from genetically (whose side of the family). I had to stop my conversation with her b/c that's all she was focused on.

[Snoopy]

Tracy,

Welcome home! I hate to tell you this, but in some respects, the worst part of recovery has just begun! Once the kids get home, they start eating better, sleeping better and just generally feeling better and it is SO hard sometimes to keep them down. It might be a constant battle of reminding her to slow down, don't do that.....in other words, she is like a two y.o. You feel like you can't leave her alone for a minute without her doing something she shouldn't be doing. Then again, it is one of the best parts of recovery, because every day you are one day closer to having your normal life back. And trust me, it is a wonderful feeling to have normalcy in your life again.

Mary Lou

[smileyskl]

Tracy,

I know exactly how you feel. My Katelyn seems to think everything has to be rush, rush. Eight days post-op (our third day home) I was in the back of the house and heard beautiful piano music. Katelyn just decided to get up and play the piano. This meant she had to pull out the bench (I am certain it weighs more than five pounds) not to mention the bending, and she was sitting there unsupported, playing as if she were at a recital or something. I don't really think that they "GET" the whole restriction thing. If they feel okay, then they want to do it. I am constantly reminding Katelyn what not to do.

Mary Lou's comment about its like having a two year old is right - actually, Katelyn keeps telling me "I am not a two year old"

Marian,

I have some family members and friends who are obsessed with the genetic thing also. I guess some people, even with good intentions, just want someone to blame. Sometimes, there is no one to blame, it is just the hand you are dealt to play. I know the frustration of trying to explain it. I still don't think anyone but a few close family members, and people on this forum even understand why she had surgery. Everyone else is still trying to figure out what else to do, or trying to make it like all these doctors just want money. I hope that one day there will be a clear answer. I worry about my boys having to go through this one day. I can't imagine Sharon (Pooka) going through this twice almost back to back. She should be an expert on the subject.

Sharon


I find myself looking at everyones backs these days!! I never noticed backs before

[LynnMarie74]

Tracy--- I know all about the bloating & diarrhea..ughh..it was horrible & continued into my recovery at home. I thought I had a stomach bug or something. I guess thats pretty normal from what I understand.

Im so happy to hear that she is doing better & feeling good enough to attempt things on her own. I agree w/you tho...she's got to take it easy. The last thing that she needs it to over do it and end up hurting herself. Its hard to tell kids her age that tho...I know...Ive got two boys who never listen! lol Im also pretty pig headed..always have been! Once I felt better I wanted to get out of the house and go anywhere...didnt matter...just somewhere so I could feel normal. That fantasy ended when I tried to get in the car! lol Oh well....it was my 1st attempt, that failed miserably! lol Children heal faster than we do,thank goodness & Im sure in no time she will be back to her old self again. I hope her post op check goes well too! Hopefully her lower curve will correct on its own!!

Best of luck!!
Lynn

[alwayzsomethin']

Hi all! It's been awhile since I've been on. Kaitlyn is doing well. Sometimes she still does too much, then she gets a little sore by evening. She was off all pain meds 2wks post op. She has had an occasional tylenol a couple of times. It's amazing how these kids bounce back. We just had our 4wk post op appt. yesterday, and all looks good! I'm glad we are on the other side of this! She starts back to school tomorrow with 1/2 days this week. She doesn't want to go back! This will be more of an issue for her than dealing with the restrictions!! She has gotton too used to the idea of being home. So this will be our next challenge Tracy

[Susie*Bee]

That's super news about how she's doing! Hooray! It goes nowhere but better with the physical recovery. And good luck with adjusting to going back to school. Once she's there, it should be ok, but probably tiring at first. I found that part (going back to school) hard too, even though I'm an adult WORKING at school. Ha ha ha! It's that part where we get used to being at home and doing our own thing and then knowing you'll be back in a very controlling setting again... with (ulp!) work to do! Not to mention all the TLC she's been getting from you!

Yesterday and today we've had one hour delays due to the huge amounts of rain-- so that it will be light when the buses are out picking up the kids (rural area, very small towns, almost everyone rides the bus to school...) and with this darned DST, it's back to being pitch black out when the buses are picking up the kids. I don't know about you, but I sure liked it better when we stayed on EST the whole year through! Oh well! What part of Indiana are you from? Hope the big rains haven't hit too hard where you are... Take care!

[babachi]

great news. The first week back to school Jesse came home and napped. He also brought a pillow to school for those uncomfortable desks.
Bethany

[Snoopy]

Tracy,

Was the first day back just like sending Kaitlyn off to Kindergarten for you? It sounds like Kaitlyn is doing really well. Keep an eye on her so she doesn't overdo it and end up having a set back.

Mary Lou

[alwayzsomethin']

update again

Boy, If I wanted to ride the roller coasters I would go to the amusement park. I'm not liking the one we've been on. Going through this whole process has been a LOT of up's & down's. I just posted a couple days ago, we had our 4 wk post-op, with no problems. Kaitlyn went to school Wed. for a couple hours, then that night she wouldn't go to sleep. She got very upset and scared. Next morning, she couldn't stand up straight, and was very weak. It turns out, she had another reaction to a medicine she has been on for years. This is her third reaction to a medicine since the surgery. I know it happens. I know of someone who took penicillin all their life, then one day took it again, & had an allergic reaction?! Although I wouldn't say Kaitlyn's reactions are allergic, it's that she has become very sensitive to drugs. It's just weird! I hope this is the end of the ride. I'm ready to get off!

Needless to say, she was in no shape to go back to school this week. She is doing much better again, now. But we still have to deal with the routine of getting back to school. Like I said before, that is a feat all in itself! Tracy

[Beckymk]

I'm sorry you had a setback. That has to be frustrating. Especially the meds part.

[Snoopy]

Hang in there Tracy.