Tuesday, June 12, 2012

Q&A #242

**Nancy and Anne, can you two please shoot me an email? CAmommy2KJ@aol.com** Thanks! 

It sounds like what Kellsey needs to function & do well is the complete opposite of what "normal" is for your family. I mean, you're an active, on-the-go family, yet Kellsey needs routine, structure, calm & not a lot of external stimuli in her environment? How does that work with 4 other kids in the house & your busy routine? It must be really difficult to balance Kellsey's needs against those of the rest of your kids.
It doesn't work... we've had a HARD couple years (not Kellsey's fault at all) but we've shuffled and rearranged our lives the best we can. A lot of times I still fail. 

Maybe it's some funky side effect of Ukrainian baby prison? ; ) Seriously...praying!!!
Funny you say that... that's her pediatrician's theory too... or at least his hope! He is hopeful that it's something from her Eastern European descent. It's hard to know for sure since we don't know her family medical history. Hopefully her blood work will never get any worse and she'll just be a mystery. 

So did the numbers change? Or just have stayed the same? So strange. Well, hopefully she has just odd blood and all is fine and remains fine. What would you be looking for that's different in her though? Might be hard to figure with her not feeling pain and all, no? 
They are still basically the same... a few of her counts skewed one way or another, but not enough to warrant a bone marrow biopsy yet, thank goodness! I am praying hard that she'll NEVER get to that point. As far as what we're looking for... lots of petechaie (burst blood vessels creating a "rash") as it's a sign of low platelets, random fevers (which is hard since she gets random fevers all the time from not sweating) and lots of kids with leukemia get leg pain or other extremity pain (Kennedy's was her hands) but we wouldn't know that with Kellsey. That's why the blood checks every 3 months are so important. 

My 8 year old daughter with DS just got her blood results back from an annual physical and her WBC count was low at 3.2. Last year it was 6.1. Her pediatrician wants to wait 3-4 months before we recheck it, but I'm a wreck waiting that long. From your experience, do you have any insight for me. I feel like we should recheck it more quickly, but I'm no physician, just a mom who is concerned! All other blood results were within the normal ranges. 
Unfortunately, I don't have a lot of advice... they're basically doing the same thing with Kellsey. The fact that her platelets are good is reassuring. Kellsey's are normal too. If you see any sign of petechiae, if she starts sleeping a lot (like 20 hours a day), or complaining of pain in her legs or hands, I would take her back in for a CBC. Better safe than sorry. 

Wonderful pictures... Beautiful one on Kennedy.. and little Keeghan is just adorable... Frank doing okay??? Prayers are said for him here in VA.. 
Yes, he's doing well! Bored and ready to come home for a break! But I always say that bored in Afghanistan is a GOOD thing! ;) 

Random question: Where is the donut of deployment? Too depressing? Maybe after August you can update it? Praying for you and this deployment right now! 
LOL No not depressing! We've been hearing lots of rumors of a changed time frame (a little shorter thank goodness!) so I don't know what's accurate anymore. As it stands right now, here's where we're at (not counting R&R of course). 

What will your mom do with Kellsey when she's at work? Isn't that a huge burden on your mom to care for such a medically complex child all summer long? And won't Frank miss seeing Kellsey during his R&R? I know you've mentioned before how close she and Frank are. 
She actually works from home so she'll be there all day... she does have a friend who is a retired RN who is available as back up. She's very excited to meet Kellsey and spend time with her as she works with an adult with Down syndrome on the weekends. My mom offered to take Kellsey and we have her pediatrician there aware that Kellsey is back and ready to help if something comes up. We got all her specialist appointments done until August so she's covered there. Kellsey was not going to go to California with us anyway. It was already set that my mom would come out and stay with her. Originally when we made these plans we weren't thinking about the summer heat of California and all that entailed. When I talked to Kellsey's doctor about it he said that if she was going to go, she'd have to be in a/c the whole time which is impossible. I don't think I've ever said that she and Frank were close except for right after they came home from Ukraine. Because of Kellsey's short term memory issues, she doesn't really remember him and refuses to talk to him on Skype or the phone. 

Will your mom fly out with Kellsey to CA when you all go to Disney? Did Kellsey enjoy Disney? Now that I think about it, that's probably not really her cup of tea is it? Sounds like you've got lots of fun planned. Think you'll make it the whole summer without Kellsey? 
Kellsey did well at Disney when we went in November, but it wasn't hot there then and we didn't take the risk of her overheating. We did still have to try to preempt her self injuring behaviors as she was extremely over stimulated the whole time. It was a difficult week and her self injuring behaviors have gotten a lot worse since then. She's much happier when she stays on routine, knows what to expect and doesn't get over stimulated. I think Kellsey is going to have a great summer and her being happy makes me happy. We'll see how the weeks go.  

I have read lots of blogs on where the familes have children w/ special needs, and they don't always have someone to take care of their child when they need a break. I think it's called Respite Care? Sounds like a good thing to me! Everyone needs a break now and then!
Yes, in a way, this IS respite care. I have tried and tried to get respite care here in town but either got denied because she's "not medically needy enough" which makes me laugh or because there was no funding available. We have exhausted every avenue here in town and in Denver. 

 I was wondering if Kellsey is getting any regular therapy outside of her school day specifically for her issues with RAD? I know it is a very difficult diagnosis, and there are mixed reviews on how to best treat children with this issue.
She is not... when we went to the Down syndrome clinic about 6 weeks ago, I talked to the doctor there and he said that unfortunately there was not a RAD expert in the area and he didn't have anyone to recommend. Her OT in school has been passing along ideas for me to try with her and she is on medication that's supposed to help with her behaviors but so far, it's not working. Hopefully in time... I agree that there are SO many different views out there about "treating" RAD... it's hard to know what is right. 

 I was wondering if you could someday write a post about RAD ,and how it is affecting your family. I know that I personally have no clue about it, and would like to learn more about it. Is this RAD going to be permanent with Kellsey? Would it be better to send her to live in a residential school type place where she can be safe, and it won't affect your daily family life? I can only imagine how her intolerance of the heat limits where you can go with the rest of the children. I hope you can explain more about it someday, so that people like me can understand how it affects families, and I am sure others would like to learn as well. 
Yes, one day I would like to do a post like that... there are lots of websites out there talking about RAD but every child is different. Even talking to friends who are parenting kids with RAD, I am amazed that while there are some similarities, we are all dealing with different issues as well. I think that RAD IS permanent in some way shape and form. My friend Brook commented on this post about RAD and how it still affects her daughter even YEARS after they brought her home. I came across this letter on a RAD website the other night when a friend sent it to me and thought it was excellent! It is really written to give to a teacher who will be working with your child with RAD, but it explains a lot of behaviors and covers a lot of the things we've been dealing with. Of course there are some things on there that don't apply to Kellsey due to her age and having Down syndrome. I know a few people who have utilized residential schools for their children, and we're not at that point yet... I still have hope that she CAN thrive in the right environment and situation. I'm hoping this summer will prove that... one way or another. 

 Just read about a wild fire in your area. Hope all are safe.
Yes, we are safe, thank you! I think the fire was north of us. It definitely hazed in our mountains for a couple days. From what I heard on the news it's all under control. 

Am I understanding that Frank gets to come back to USA for 2 weeks? I have no idea what military life entails - but havng him back would really make this summer special. Sorry if I have misunderstood.
Yes! Every deployment he's had (because they've all been a year long or longer) he has been able to come home for a 2 week R&R. I think one time he came home for the kids' birthdays in November, once he came home (or to Philly really) for Kennedy's spine fusion surgery, before that he came home for Kennedy's Make-A-Wish trip and I forget what the first time was for. We always try to do something though and not just sit around at home for the 2 weeks. (Uhh... spine fusion surgery was not at the top of our R&R wish list! LOL) 

 Hey, *I* would have LOVED to been able to spend the summer with a relative (all by myself!)when I was a kid!! :) I hope though, that your Mom has a camera, and will take some fun pics of what they have planned so we can see too. ;)
Oh I'm sure she will!! I will of course pass them along. :) 

I still think you should've kept it quiet until September, lol! Have a super summer and make sure Frank puts some guacamole and carne asada in the freezer for when I come out in August :) xo
HA! Probably! LOL That's what I get for trying to be open. As usual though, the good has outweighed the haters. (Though I know there are more behind the scenes. Whatever.) Frank won't be coming "home" at all... we're going to pick him up from the airport and drive straight to CA, so I can make no promises of carne asada... but I hope you will still come anyway! ;o)


Warrior Mom said...

I love when you do your Q&A's! Thanks :)

Warrior Mom said...

I love when you do your Q&A's! Thanks :)

Alice Fraggle said...

I have a question about Kellsey. I hope it doesn't come across as mean or rude because I really, REALLY do not mean it that way... but do you ever "regret" adopting Kellsey? I don't mean that you don't love her and care about her, but it seems like her struggles have really come to light lately, and you were't aware of them when you adopted her. As I said, I don't mean that in a mean or rude way - I know you wouldn't trade her for anything - but I wonder if "regret" ever runs through your mind? Do you grieve for the little girl you thought you were bringing home?
I understand if you don't want to answer those questions - pubicly or at all - and I respect that. :) I was just curious. :D
I also want to say Thank You for being so open about Kellsey and her needs. I'm sure it would be easy to not say anything about the struggle and only talk about the positives, but I think that wouldn't really paint an accurate picture of adoption (as I assume you also think - otherwise you probably wouldn't post about the struggles). I think your family is great for adopting Kellsey, and for changing your active lifestyle to make sure she's happy and thriving. Also - your kids are adorable!

aweyers2 said...

You are amazing!!!! How do you have time to do posts and raise your family. You have a very blessed family and a great mom!

little.birdy said...

Have you tried visual schedules with Kellsey? I use visual cues for my middle school speech kiddos all the time, and I usually just use clip art instead of Boardmaker or some other expensive program. Bless her sweet heart, and bless yours as well! She sounds like a spunky, challenging little one. Those are my favorite kind. Wish I was local and could watch her for you!

Monicas Mom Musings said...

Ha, if you kept the news a secret until September, then people would have noticed no pictures of Kellsey and they would have pointed that out. Kind of a lose lose situation when it comes to people who think they know more about your life than you do ;).