Thursday, July 21, 2011

Ohio Part 2....Bath fun and Neuro Visit

My mom had bought Kylie a ball pit, so we decided to take all the balls out for Kylie to play with them. It was not too much later before bath time rolled around, and Kylie had some ideas of what to do with all the balls...100 of them at that!

Matt was getting the water started while Kylie loaded up a purse with some balls, and then dumped them in the tub. Matt said no more, and told Kylie to get ready to get in the tub.

The next thing we see is Kylie coming back with an empty purse, full of giggles, and loading it up again to dump it in the tub. She contd to do this until she got all of them....I have no idea why I didn't get some video of this....I was too busy watching her giggle like crazy and loving every moment of it!

Below is a video montage with some pics of Kylie in the tub, and a little bit of video too. Enjoy!

On to the apptmt. I wanted to be sure to get some pics of Kylie by the fish tank and a couple others to compare to pics from previous visits. Click here for last years visit.

She just looks like such a big girl here!

Family pic with Dr. Ghosh

(We had just given Kylie a sucker for doing so well. I think that is all it took for her to allow the doctor to hold her for the pic...why didn't we think of this sooner)

After the apptmt, we went to find the tree that they have projected on a wall downstairs in the building adjacent to ours. I love this tree, I think it is really neat, and just kind of beautiful to watch the image dance on the wall. Below is a video of Papa Joe helping Kylie climb the tree, and then of Kylie and Matt racing in the tunnel that leads to the parking garge. So cute!

Needing to do one more checkup with the help of her doctor bag as we were leaving.

Dr. Daddy checking Kylie's heart...yep, it's full of love!

Touching the water display out front...just like last year :)

We found some Monsters Inc. friends at a stop on our way home.

Sleepy Kylie

I decided to let you all enjoy the pics and video, while I keep you in suspense about how her apptmt went :)

Okay, so we had my dad come with us so he could see where he had to go to take my mom up to the Cleveland Clinic a couple days after Kylie's apptmt. Also, I wanted him to meet Kylie's doctor and see what doctor visits are often like for Kylie and us.

Well, I think Papa Joe was a good luck charm, because Kylie did absolutely AMAZING! She usually starts crying the moment they call her name, and it's just a meltdown from there on. Kylie was such a big girl and stood on the scale and up againt the wall to get her height. I know this may not be anything big to most, but this was a HUGE step for Kylie. She was AWESOME!

She did extremely well all throughout the apptmt...she had tears welled up in her eyes, but she held it in and never let the tears spill over. Not even when the doctor took her head measurement and did the physical exam. She is really growing up!

The doctor was very pleased with how well she was doing, and all the growth she has made socially. He still thought she was shy, but that could just be Kylie and nothing more than that.

So what were his recommendations?


Yep, he said he has no recommendations and told us to keep doing what we are doing!

Below is literature from his official report:

In summary, Kylie is a 30 month old girl with history of infantile spasm, treated with ACTH with no further recurrence of any form of seizure, so far. She developed features suggestive of milder form of autistic spectrum disorder, now improving in all parameters on appropriate intervention with behavioral training, speeh therapy. Speech is normal now. Stereotypies improving. I suggest continuing same management, prognosis seems good.

Hooray! We kind of figured he would be pleased with her progress, but we had no idea he would say "No recommendations." It was later that night when I realized that we were so elated with his comments that we never asked him any questions....oops!

So I emailed that evening. I asked the question that is hard for any parent to ask and more so for a doctor to answer, but I just had goes:

Based on both the cases you have seen throughout your profession and with our visit today, do you feel Kylie will lead a typical life, or may have some issues down the road? I understand so much of this is a wait and see type of thing, but I worry about her, and any extra information or perspective you can give me will help me out.

His response:

No one can guarantee but it seems that Kylie will lead reasonably good quality of life if no new problems crop up and if appropriate behavioral/educational measures are taken.

Isn't it funny how their responses are so much shorter than our questions? Anyhow, I was so excited with all of this. And Matt was much so that when we woke up he turned to me and said "Do you want another one?" WOOHOO, it is about time!

So who knows, maybe sometime next year we will see about Kylie becoming a big sister :)


JSmith5780 said...

:) Big happy smiley face. Glad everything went so well. Kylie will be a GREAT big sister!

MJStump said...

We are so excited too!

Rochelle said...

YAHOO on all accounts! Great news from the doctor and great news on the family planning. She is doing fantastic and will live a totally typical life for her (remember not to compare her life to anyone elses). She is fantastic just the way God made her.
So happy for you guys!


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