Tuesday, November 5, 2013

Kennedy update

It's been awhile since I've updated on Kennedy over here, so I thought I would do a quick one! Last week she had a couple of appointments. The first one was in Denver at Denver Children's to do some developmental testing to see if the chemotherapy she was on caused any delays in her development.

Guess what?

She's mildly delayed. 

Who knew?! LOL

On a serious note, it was helpful to get a comprehensive view of where she's at in math (her weakest area by FAR!) and get some ideas to help her understand math more. With a calculator, she can add and subtract up to 4 digit problems (and probably beyond that) and get the answer right. She's on par with her peers, actually. Without the calculator is a whole different story! But they were concerned that she's not really understanding WHAT she's doing. For example, one of the answers to a math problem was 1,011. They asked her if that was a big number or a little number and she said it was little (I'm assuming because of all the 1's) so they said it might be a good idea to go back to basic number concepts and reinforce that a bit. They said it is a concept that will come with time, but practice always helps. Which I agree with!!

She did better in reading and the lady who tested her was impressed with her sight word skills and her handwriting but she lagged on spelling which kind of made me laugh. The words they asked her to spell she absolutely knows so I'm thinking that must have been done in the afternoon when she was getting worn out (I wasn't in there with her, so I don't know for sure). She had some good ideas about reinforcing the spelling she IS doing though and I'll definitely be talking to her teacher about that.

She DID say that attention was a HUGE issue (which we already knew) and that it definitely could be caused from the chemo she was on... a large amount of kids on that same chemo ended up with ADD/ADHD. So we'll be talking with her ped about that tomorrow.

Anyway, there wasn't anything too shocking in there. Most I agreed with, some I didn't, but we absolutely agreed her attention (or lack thereof) could be skewing the results. Overall she said that Kennedy has a bright future and she'd most likely be able to hold down a job and be very independent for the most part. She stated that the general ed classroom was exactly the right place for her and she would not recommend moving her and was happy to see the supports she has in place at school. She said that hopefully this could continue as she gets into the upper grades. That would be nice! One year at a time.

She kept checking on me to make sure I was ok with Kennedy's results and I kept saying, "Yeah... she has Down syndrome. It's ok!" LOL I don't know if she expected me to be shocked that she's delayed or what. But she's usually working with typical kids so I just told her that we're pretty much "over" the whole Down syndrome thing... now 8 years ago, I probably would have burst into tears! ;) Delays are not a shock in the world of Down syndrome.

In other news, last week we also went back to the eye doctor. Kennedy has been refusing to wear her glasses lately because she says they give her headaches. She was due for a recheck anyway, so I took her in to see if her prescription changed. The ophthalmologist decided that instead of putting her through MORE glasses that may or may not help, that it's time to do eye muscle surgery. Whenever she looks at things up close, one of her eyes turns in towards her nose. It's not bad and not all the time but if she doesn't wear her glasses when she's reading and stuff, it could get bad. This is an outpatient surgery and several of my friends who have kids with Down syndrome have had this done and they said it's not difficult at all. Whew! We're having it done the day before Thanksgiving so she doesn't miss any school. They said by the following Monday when school goes back in, she should be good to go!

Anyway, I guess that's about it! Other than that she's been having pretty good days at school, she's making lots of new friends this year which is fun to see and things are moving right along. Thankful for these easy times, always! :)

8 comments :

Avicile Mohaili said...

She sounds a lot like my sister. :3 She's 26 now and was able to keep up in class with little difficulty until middle school, when she was put into more lifeskills classes. She did still take a handful of modified academic classes though and enjoyed herself. She even took a semester of Chinese in college (audited) and was able to keep up with everything.

Being independent goes a long way, keep up the good work! :-)

Lynn said...

Good to know what you're dealing with and know some things that could help. Will be interesting if you can tackle the attention issues how the testing goes next time!
Praying right now!
1 Peter 1:3-5 Blessed be the God and Father of our Lord Jesus Christ, which according to his abundant mercy hath begotten us again unto a lively hope by the resurrection of Jesus Christ from the dead, To an inheritance incorruptible, and undefiled, and that fadeth not away, reserved in heaven for you, Who are kept by the power of God through faith unto salvation ready to be revealed in the last time.
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Rosa Ortiz-Lane said...

She is doing amazing!

Anne B. said...

Always love to hear updates on your not-so-little-anymore Sincess!! I love her spunk and her joy! Glad you can get some input on the attention thing...whatever its cause. Heck, I could use a little input on my own inability to focus, especially on the things I don't like so much! LOL! (((HUGS)))!!!

Monicas Mom Musings said...

So you said they said they'd be able to determine if the delays were due to chemo or Down Syndrome. Do they think this is anything out of the ordinary for a child who you would already expect to be delayed in many areas?

Lynn said...

Love this photo of Kennedy, too!
Know that you're in my thoughts and prayers!
Psalms 73:23-26 Nevertheless I am continually with thee: thou hast holden me by my right hand. Thou shalt guide me with thy counsel, and afterward receive me to glory. Whom have I in heaven but thee? and there is none upon earth that I desire beside thee. My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.
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Lynn said...

Looking at Kennedy's pic when the page pulled up. Really looking at it...and wondering what she's thinking. Makes me wonder what life really looks like from her perspective.
No matter what's happening, good or bad, these words always bring such great comfort. Praying!
Job 19:25-27 For I know that my redeemer liveth, and that he shall stand at the latter day upon the earth: And though after my skin worms destroy this body, yet in my flesh shall I see God: Whom I shall see for myself, and mine eyes shall behold, and not another; though my reins be consumed within me.
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Esther said...

Really, there are steps you can take prior to eye muscle surgery. I would give a small fortune if I had never had eye muscle surgery at all. Plus, eyes change over time...you are setting her up for more eye surgery in the future.

I was able to have my son see a university orthoptist who developed a simple eye exercise program for him when he was about age 8-10. I recently asked him if he ever had any double vision or other issues, and he said none at all. I on the other hand go through problems and have to have hand made lenses now. I still see tHe same eye orthoptist and ophthalmologist who helped my son. Due to scar tissue, I won't be able to have eye surgery again. My right eye turns in. My work is effected each and every day by eye issues.

I always urge caution and care with accepting the idea of eye surgery. It seems too easy, when any surgery should be approached only as a last ditch effort.

I've been following Kennedy'ss story for a number of years. I wouldn't say this just to say it! I definitely care about her vision and future!

Caring Mom