Fun without Casts

We were all very excited when the Dr. decided not to put more casts on Kinsey on Monday! Over the course of the week, Kinsey has really been enjoying her feet again :) They're SUPER ticklish and don't seem to be painful at all. We've been letting her soak in the bath every night and slathering her with lotion twice a day to help the skin heal and it's already looking much better. She still has one ugly scab that needs to come off, but hopefully that will happen soon.

Here's a video of her playing in the tub. I was pouring water in front of her and she was trying to catch it. So cute! http://youtu.be/6T4oXTPIf3Y

Kinsey's been wearing socks and shoes again and I've discovered that her feet have grown a tiny bit. That and because they're the right shape now, most of her old shoes don't fit anymore. I'm not buying new shoes because she will have the splints in a week or so and will be wearing them during the day so there's no point. We are getting new shoes from the splint company that will fit over the splints so that will be good.

Now that she's cast-free, the PT was able to really adjust the Gait Trainer walker to fit her correctly. And she's been tooling around the house like old times! Here's a picture and a video: http://youtu.be/YlldPwLuCYs

Last week I forgot to mention that I took Kinsey to the pediatrician about her eating. I mentioned to the speech therapist last week that I felt like she wasn't eating well because she would eat a little then need to burp. Sometimes it would take 15-30 minutes for the burp to come up so she'd just stop eating. She suggested that it could be a reflux problem even though she didn't have real obvious symptoms of it (like spitting up or anything). So I called the Dr. that afternoon, but that night she started eating better again. When we saw the Dr. a few days later and I told her about Kinsey's symptoms, she said it could be reflux and gave her a prescription for Zantac, but Kinsey continued to eat better so I didn't give it to her right away. Then this Tuesday when the PT was here, Kinsey had some milk, then burped a bunch of times and the PT immediately asked if she has reflux! So then I decided to try the medicine and she totally chowed down that night! Then the Nutritionist was here yesterday and I was telling her about Kinsey's eating challenges and the whole story and she immediately said reflux! So Kinsey has continued to eat better and she's taking the Zantac twice a day. I'm really hoping that she will put on some weight now . . . when talking to the nutritionist I went back through the blog and found that she weighs about the same now as she did at 13 months old (currently 18 lbs 15 oz).

So for now Kinsey is taking two medicines twice a day (heart and reflux), but we have the follow-up appointment with the cardiologist on Monday and we're hoping he will have good news about her Wolffe-Parkinson-White syndrome and the heart medicine won't be necessary anymore. You may remember when we first saw him a few months ago he suspected that the WPW might have resolved itself and he had us slowly reduce her medicine and on Monday he will do an EKG and Echo to see if he was right. He will also look at the cardiomyopathy and see if that is still the same or has gotten worse (in April it hadn't gotten any worse since she was 6 months old).

Please pray that Kinsey continues to eat well and that the cardio appointment goes well and we get good news!

Special Edition: No More Casts!



We went to the doctor today for Kinsey to get fitted for her splints and expected to have casts put back on until the splints come in, but the Dr decided not to put any more casts on and to let her skin breathe instead! How exciting that she is finally done with all the casts!!!

 

Her feet look really good too! The incisions are pretty well-healed and the Dr. says all the bones are in the right place. Her feet are turned out a little bit, but the Dr. says her muscles are doing that, not the bones and she can move them freely. Most of the scabs are gone except for one big one on her right foot. She has a lot of dead skin that needs to come off and a bunch of really pink new skin that needs to thicken up. But they don't seem to be sensitive  - at least not painfully, but they are very ticklish!

 

Here are some pictures:



 

And tonight when we got home, she got in the bathtub for the first time in 9 weeks . . . and she loved it! I wasn't sure if the water would bother her sensitive skin, but it didn't at all. She was playing and kicking as always. http://youtu.be/yJFfLZad-eU

I thought it was cool how well you can see how long her hair has gotten!

Getting Better at Standing and Other Accomplishments!









Getting better at standing. This was the first time she stood on her own since surgery.





This week Kinsey has made great progress with standing. On Sunday I put her in front of a chair and she stood with her arms against it for about 10 minutes! That was the first time she stood on her own since the surgery. She's been doing more and more standing since then, even getting back to standing in her rocking horse: http://youtu.be/9gpKgujMpo8 It seems like she hasn't remembered how to sit down when she gets tired though. You can see in the video that she wants to sit down at one point and she kindof leans back, but doesn't sit. I'm assuming it has something to do with the casts.

 

We've been practicing with putting weight on her arms too using some kneeling activities that the new PT taught us. She seems to be ok with it, except if she sits back on her feet because the casts pinch the skin behind her knees when she does that. But she is getting better about putting weight on her arms when we do those exercises.

 

Kinsey continues to do well wearing her hearing aid, wearing it for 4 hours at a time pretty consistently. She is also tolerating the glasses. Tonight we went out to eat and she wore both the hearing aid and the glasses before, during and after dinner without pulling on either one of them! I think we'll definitely be able to do some vision therapy exercises with her since that only requires about 10-15 minutes with the glasses.

Doesn't it look like she's reading the menu?

Another big recent accomplishment is learning to put things "on." She learned at probably about 8 months old to take the rings off her stacking toy and now she knows how to put them back on! Here's a video: http://youtu.be/rgsosssiJA4 I'm very impressed with this new skill! She also really enjoys putting things "in" too. I showed the video of her doing this a couple of weeks ago and she continues to improve with it. Today she was picking up the little puffs I put on her highchair tray and putting them into the food jar. It was really cute!

 

On Monday, Kinsey and I will go back to Children's Hospital for her to be fitted for her new foot splints. They will remove the casts, fit her for the splints, then put new casts back on until the splints are ready for her to wear. Hopefully that will only take a week, but it could be more like 2 or 3, so she might end up wearing casts for 12 weeks instead of 10. We'll have to wait and see. I'm not sure what color casts we'll get this time - I will decide on Monday. Once we get the splints, Kinsey will only have to wear them during the day. And the splints have been approved by the early intervention program so they will be paying for them - yippee!

 

That's it for this week. Here are some fun pictures and a video:

 

Kinsey playing on a bouncy thing in a store. I bought her something similar to this for her birthday present - I think she will like it: http://youtu.be/u2c02L-UF7I

 

I think these pjs make her look like such a big girl.
I guess because they button down and have a collar like my pjs.

Pulling on Bailey's ear

Lounging on the couch with Bailey. I love the way her legs are crossed and her arm
is resting on Bailey. She looks so relaxed!

Helping daddy install our new floors

Kinsey the pickpocket. She pulled the pencils out of daddy's back pocket.

22 Months!

Kinsey turned 22 months old on Monday! It's so hard to believe that her 2nd BIRTHDAY is only 2 MONTHS AWAY!!!

Unfortunately, Kinsey caught another cold and started to not feel well on Tuesday :( Poor thing has a pretty bad cough and a runny nose. As a result, she's been pretty grumpy most of the week. But we did manage to still have some fun . . .

A while back I told you about Kinsey starting to play with the Rock & Roll Elmo - well now she's started to play his guitar too! Here are some videos:
I tried to sneak up on her to get this video- when she sees me with the camera, she stops playing. I love the way she smiles at me when she sees me though: http://youtu.be/bmvNs7__5j4
There's a little singing at the end of this video: http://youtu.be/d-e0_q0kgwI
And here she is playing the guitar actually with Elmo (while eating the tamborine . . don't mind the cough at the end): http://youtu.be/wtUi9KtehI0

Monday was our first MOPS (Moms of Preschoolers) meeting. I met a local mom a few weeks ago who told me about the MOPS group that she is a part of and she invited me to attend. It was great to meet some new ladies and have a couple of hours with only grown-ups (they provide child care during the meeting).

Wednesday was our first Music Together class. We went to a free trial class a few weeks ago and Kinsey really enjoyed it so we decided to sign up. It's a weekly 1-hour class where the moms and kids sing and dance together and play some kid instruments. The class is a blended age class with kids from a few months to 5 years old and Kinsey really likes to watch and interact with all the other kiddos. She also really enjoys dancing around and playing with the instruments. She wears her hearing aid during the class too.

In fact, Kinsey has been MUCH better about wearing her hearing aid this week! We have a new goal with the hearing therapist to wear the hearing aid for 30 minutes, 3 times a day so I've really been trying to put it on her more and she's not tugging at it right away anymore. On Wednesday she wore it for 4.5 hours straight!! We think she has finally realized she can hear better with it and likes that :)

Kinsey is also doing better this week with standing up. During music class, she stood up for the length of an entire song (with me kneeling behind her) and danced. And since then, we've helped her stand a few more times like that. Also, during the PT visit this week, we worked on adjusting her walker to fit her (since we got it shipped to us after we moved, this is the first time a therapist has seen it and been able to fit it to her). Anyway, the therapist noticed that the angle of her casts actually make it difficult for her to stand up - they cause her butt to stick out really far and make her lean forward. So that explains why she hasn't been standing very well and can do it when you're behind her to help her stand straight. It was a relief to hear that and it makes me hopeful that she will be able to stand better once we finally get all the casts off!

And finally, the big news this week is her new glasses! We went to pick them up today and she seemed pretty excited about it. She smiles when you first put them on her and she'll wear them for a few minutes before she starts pulling them off. I think she likes them, but can't resist playing with them. Hopefully she'll get better about wearing them over time. We are going back to see the eye doctor in about a month to see how it's been going. If she's tolerating them, he will teach us some vision therapy exercises to do with her when she's wearing them.

Here are some fun pictures of her new glasses:

I love the smirk in this picture

where else do you go after getting new glasses,
but to the book store?

Looking like an adult with the glasses
hanging around her neck

Checking herself out in the mirror

Bike Rides, Gator Games, Animals & Lots of Therapies/Doctors, Oh My!

This week it's started to cool off around here and we're getting some Fall weather. We've been loving it! A friend gave us a bike trailer for Kinsey because he didn't need it anymore and we were excited to try it out this week. It turns out Kinsey much prefers the trailer to the bike seat. We went on two nice, long bike rides in the evenings this week and plan to go on many more before it gets too cold. Here are some pictures:

Not sure what to make of it at first

And she was really confused by the screen

But once we took off, she liked it

We stopped at a bridge to take a family photo

And after one of our bike rides we went to Dairy Queen for some Blizzards. Kinsey enjoyed them as always:

Last weekend, in spite of Kinsey not eating well (more on that later), we had some fun. Saturday was the first Gator game, which we were very excited to get to see (not sure how many games we'll get to see being so far away now). Kinsey was all decked out in her Gator cheerleader outfit (which everyone around here assumed was a Denver Broncos outfit). And after a nap, Kinsey sat on the floor and watched the game. I noticed that she looked up and really watched when we got an Interception at one point! I was able to capture a picture because we were watching the game on DVR and I rewound it to get a picture and she did the same thing again :)

 

She was really watching the interception! (Don't mind our "tv stand"!)

 

 

And we went to the Windsor Harvest Festival on Monday and Kinsey got to see some more animals. There was an area with a couple of Alpacas that Kinsey got to pet and there was also a little petting zoo where the Pony was Kinsey's favorite (Grandparents - Kinsey is NOT getting a pony!).

 

 

Petting the Alpaca

 

Petting the Pony



Something I've been working on with Kinsey for a few months now is putting things "in" something. She's mastered the art of taking things out, but never wanted to put anything back, but recently she's gotten pretty good at it. I even managed to catch her in action: http://youtu.be/AapzhEeJISI

Today we went to a new eye doctor to get more information on vision therapy instead of glasses or surgery. I really liked this new doctor - he spent a lot of time explaining things to me instead of uttering buzz words at me and rushing me out the door, like the last eye doctor did. He explained that Kinsey is farsighted - for those of you like me who get that confused, it means she has difficulty seeing things close up. That is what causes her to cross her eyes. She's trying so hard to focus when looking at something close that she crosses her eyes! Now it all makes sense to me! He said most children her age are a little farsighted, but that she is more farsighted than most, so we do need to do something about it.

He offered a couple of solutions - glasses and/or wearing a patch for 10-15 minutes a few times a day while we do some eye exercises (vision therapy). Most of the therapy would be done at home after he shows me how to do it. Since our new insurance will cover the cost of the glasses except for $25, we are going to try the glasses and see if we can get her to wear them. We tried several different types and styles and settled on a design that's specially-made for children with Down's Syndrome whose eye and nose shape is typically the same as T18 kiddos. The sample pair fit well and looked great on her. She even left them on for a few minutes instead of ripping them off immediately. Let's hope that's a good sign.

Anyway, we will try the glasses. If she will wear them, we can put a patch on the glasses to do the exercises. If not, we will have to attach the patch to her head and do the exercises that way. The goal is to prevent her eyes from crossing and to prevent one of them from "shutting off" in the long run.

This week we also had our first appointment with the new Physical Therapist. She had some great ideas to help Kinsey build the strength back up in her legs as well as some new ideas for ways to strengthen her arms. She will be coming to the house once a week just like what we had before we moved, so that should be good.

Kinsey really doesn't seem to want to stand up right now. She was quite wobbly - like a newborn horse trying to stand up, but that has gotten better. Now she just wants to bend in half and put all her weight on your arms to hold her up. She has stood from a sitting position a few times without complaining and she's been spending time in her jumper again working on that strength. Here's a video: http://youtu.be/psr9i6oAh2I

We also had our first appointment with our new speech therapist who is going to work on feeding issues - getting Kinsey to learn how to chew and stop drooling so much. It was really good timing for her to come because Kinsey wouldn't eat hardly at all all last weekend - for 4 days really. We were getting really concerned, but she's back to her usual eating habits now. We're pretty sure that she was having some teething issues with the 2-year molars that have been working their way in for a while now. They must have really been bothering her for a few days!

In fact, now that she's back to her regular eating habits, we've even gotten her to try some more new foods. First of all, she's gotten much better about eating the stage 3 baby foods, which are chunkier so she has to work a little harder to eat them. But we also continue to give her little bits of our foods to see what she thinks. This week she tried chicken salad and salmon, both of which she seemed to like. She also really likes cottage cheese, but she's been eating that for a while now. And tonight we went out for Thai food and Kinsey even ate some Crab Rangoon and some egg and noodles from my Pad Thai. She's developing quite the sophisticated palate!

That's it for this week :)