The End of a Healthy Streak

Last weekend brought the end of a more than 3-month streak of health for Kinsey. Saturday morning she came down with a cold and was a little miserable and pathetic on occasion, but actually pretty good despite a runny nose and bad cough. I think it was a pretty mild cold (speaking from experience since Jamie and I got it too) so Kinsey handled it pretty well. It didn't affect her eating very much, she still slept well (even took a good nap on Sat and Sun) and was generally in a good mood, except when the cough hurt her throat. She still has a bit of the cough and an occasional runny nose, but she's completely back to her normal self otherwise.

On Monday the cold caught up to me and I really needed a nap. I was hoping that Kinsey would nap again, but she was starting to feel better so she wasn't interested in that. I fell asleep on the couch for a few minutes and at one point Kinsey scooted over and was banging on the couch to get my attention. When that didn't work, she decided to steal the tissue box off the table behind my head and proceeded to take every tissue out of the box. She was pretty happy about it too!



Anyway, we skipped one day of therapy this week, but otherwise it was just a mundane, regular week.

I know I've mentioned how much better Kinsey is eating these days, but I wanted to share a story. Several months ago, back when it was painfully difficult to get her to eat, we were eating out at a restaurant and Jamie and I were struggling to feed Kinsey while a family with a young baby (about a year old) was sitting near us. The baby was happily taking each bite of food and even leaning toward the spoon. I try not to compare Kinsey to other children, but sometimes it's hard not to when I see other children, especially ones that are younger than her, easily doing things that she doesn't do. Anyway, I caught myself wishing she would eat like that baby. Well, Kinsey has been eating better for several months now, but more recently we noticed that sometimes she even leans towards the spoon with her mouth wide open! It took us a while to get here and it certainly wasn't easy, but I sure am glad to be like that family now!

This week Kinsey's prescription for Prevacid ran out and the Dr called in a new one, but the insurance company is requiring pre-authorization again even though it's essentially a refill. Since they're giving us the runaround (if you remember the Dr went 20 rounds with them over about 2 months to get it approved in the first place earlier this year), we are now on an involuntary test to see how she does without it. We don't know if the medicine made the difference in her eating and gaining weight, or if it was a coincidence, but it all happened at about the same time she started taking the medicine. But I guess we'll find out now. I'm hoping it turns out she doesn't need the medicine and we can stop giving it to her/don't need to fight with the insurance company for the medicine anymore. The second best option would be that she needs it and the insurance company doesn't make us wait too long/fight too hard to get it. Worst case scenario would be that she needs it and they give us a hard time. We'll wait and see what happens!

That's it for this week. Here's a cute video of Kinsey and Jamie playing with Kinsey's new tractor toys (yes, another new one): http://youtu.be/ULxEhtGu4XU

A Hearing Reality Check

Kinsey had her hearing test and CT Scan this week, but the results weren't very interesting (or good). First the doctor examined her ears under sedation and was able to poke around some, but she still couldn't see an eardrum through the narrow canal on the right side and said the blockage on the left felt pretty solid, so probably bone. The audiologist did the ABR (the test that measures the brainwave response to sound). They did this with earphones to test the response to sound coming through her ears and also with probes that test the response to sound conducted through bone vibration (which is the same thing her hearing aid does). These tests didn't reveal anything new: she hears at 80 decibels or louder without the hearing aid - this is profound hearing loss to near deaf - and she hears some frequencies at 20 decibels (which is normal) with her hearing aid. Some frequencies, even with the hearing aid, she still doesn't hear that well. Those are the same results we were getting in the booth test with her awake and relying on her to respond to the sounds. So at least we know the booth test is accurate. This still doesn't explain why I know she responds to me sometimes, especially when she doesn't even know I'm there and she responds to my voice. Things that make you go hmm?

The CT Scan wasn't very enlightening either. Apparently, the ear drum is soft tissue so it doesn't show up well on a CT Scan so the report said they couldn't tell whether she has either eardrum. That's a bummer because I, for some reason, thought we were going to get that answer with this scan. Anyway, the right ear is partially blocked with skin and bone and the left ear is completely blocked with skin and bone. (We were hoping for just skin because that would be easier to repair.) The area behind the blockage on the left is not fully formed and some of the little bones that are supposed to vibrate the sound are fused to the wall so they can't move like they should. The good news is that the very inner ear, the cochlea and other parts in that area, are well-formed and "unremarkable," which means they are normal looking. Long story short, there's nothing they can do to correct any of this until she is older, or more importantly, until her ears are bigger. Typically around 5, but I would guess with her smaller size, especially her head and ear size, that she will need to be much older before she's big enough. In the meanwhile, her hearing aid does a good job of helping her hear pretty normally and I just need to get better about having her wear it more (I slacked off recently because I was convinced she could hear).

The other piece of good news that did come out of the CT Scan is that her vestibular system is fully developed and normal. That means her hearing troubles aren't affecting her balance or ability to walk! Something we've been wondering about, so at least we got an answer to that question. And speaking of her balance . . . 

This week Kinsey also got her new foot splints. They made them fairly tall and the original plan was to the cut them down a little, but when the orthotic guy and the PT looked at her feet in them, they decided to leave them tall. They were concerned that she could still overpower them if they were shorter and twist her foot out like before with the old splints. So we left them tall for now and they can always be trimmed down later once she gets used to standing flat on her foot instead of the edge. She just got these on Thursday and I've already seen a tremendous improvement - today, after sneaking my hands away from her, she stood on her own and maintained her balance for about 2 minutes! She hasn't done that at all since we changed the splints! Plus, when she started to fall backwards, she bent her knees a little and landed on her butt instead of falling flat on her back! That's a HUGE improvement in both her ability/understanding to bend her knees and her protective reflexes when falling. She's also already walking better with just one hand for help instead of two. YIPPEE for some good news and improvements! I can't wait to see how much better she gets with more practice - it's only been a day so far!


The new splints - taller, but still open in the back to allow her to bend her ankles.

When Kinsey was at the hospital for the ear stuff on Tuesday, they measured her (it's always helpful when they use the official thing instead of me trying to wrangle her and a tape measure) and she grew another 1/2" - up to 34.5" now! She's also weighing in these days at 23 lbs+ (it fluctuates, but this week we saw 23 lbs 8.5 oz, but that might have been inflated by some extra IV fluids from the sedation.)

As I mentioned before, Gramma and Papa Wayne were visiting last weekend. Gramma watched Kinsey on Saturday while I was working a Sweet Pea Boutique booth at Severance Days, our community festival. They came to visit for a little while and Kinsey got to check out the other booths too, including the Alpacas:

 
The original sweet pea in my Sweet Pea Boutique booth at Severance Days

   
 Checking out the  Alpacas

   
 I love the way we're looking at each other in this picture!
 


She's been having a lot of fun on her bouncy cow recently and she's really good at maintaining her balance on it.

This week Kinsey has really been enjoying my ipad. It seems every time she sees me on it, she wants to steal it from me. Here are a couple of videos: http://youtu.be/JXlyG6AG2Ys and http://youtu.be/QRPJevsn8N0

Kinsey also has a new, developing skill. She "helps" put her arms in her shirts - mostly in her long sleeve pajamas. After I put her arm in the sleeve she will stretch her arms out above her head to push her hands through. I've tried to get it on video, but haven't been able to capture it yet.

Finally, Jamie decided Kinsey needed a tractor of her own, so he bought her a toy tractor. I'm not really sure it's for her though! http://youtu.be/7RwHaySBe_g

Pageant Princess

My beautiful girl participated in the special needs beauty pageant last Sunday and it was so much fun. She was the only one with a true pageant (cupcake style) dress and the most adorable! She walked up on stage with her walker (and some assistance) and they put a crown on her head and gave her a sash. My friends Aliy and Cathy (and her husband and kids) all came to cheer her on and Nicole was there to capture the experience in pictures for us (and cheer her on as well). (Jamie was there too of course :) ) Kinsey's hearing therapist Kelly, who told me about the pageant to begin with, and her old speech therapist Jodi were there too. We had a great time. Pictures are below.

This week my dad returned from his 3-month RV trip on Thursday and Gramma and Papa Wayne came in for a weekend visit today. Next week Kinsey will have her hearing test and CT Scan on Tuesday. She will be sedated for those procedures, so please keep her in your prayers. I'll keep everyone posted on Facebook that day. And on Thursday she is getting her new foot splints - hopefully they will help her learn to stand and walk better again.

We have seen some recent improvement in Kinsey's standing skills - with her standing on her own for a few seconds when she doesn't realize she's doing it. As soon as she realizes it, she gets nervous and reaches for support. She's done it a few times at the bunny hutch, the couch and the fridge. She's also getting better at moving from sitting on a stool to standing up on her own. It's still a work in progress, but we're seeing improvement. Tonight we saw her do something new - she went down a slide completely on her own and maintained her balance sitting up the whole way down! And she was really enjoying it! She's gone down a slide by herself before, but she always falls backwards and seems a little nervous about it, but tonight she was upright the whole time and she was smiling away - multiple times too!

Anyway, here are some fun videos and pictures:
Jamie playing with Kinsey: http://www.youtube.com/watch?v=yljrfwLinjM
My new cleaning lady - she's pretty expensive and only does floors: http://www.youtube.com/watch?v=pZlBzihK2aw


Kinsey checking herself out in the glass on the stove:


Kisses for the pretty girl she found in the glass: 


And then she realized I was taking her picture: 


A rare afternoon nap. This girl loves her minnie mouse! 


 Pageant Pictures: Getting her hair and makeup done:






Getting dressed: 




Greeting her fan club: 


She was really curious about the crown: 








Hanging with her fans after the pageant. I love this cute shot of her putting her arm around Amara! 





Kinsey and the boys (Cathy's)



The sash is one of her new favorite toys. She loves to put it on and scoot around in it. 

Kinsey is 2.75

This Saturday is Kinsey's 2.75 birthday! It's hard to believe that she will be 3 in 3 short months! Three is a big milestone because Kinsey will start preschool. Speaking of which, we had Kinsey's annual review this week with the early intervention program (it's annual review time because we started with them a year ago after we moved here). Anyway, all of her therapists had to do an evaluation then we all met together and wrote up her new plan, which is only for the next 3 months because all services stop when she turns 3 and starts preschool instead.  It's interesting, and somewhat disappointing, when they do these evaluations because they go through a checklist that basically compares Kinsey's abilities to an "average" child. We all know that's not a fair comparison, but that's how they can tell where she is developmentally. The interesting thing is that she is very scattered with her skills. In some respects she is only at 12 months, but in other ways, she is doing things that every 2 year old does. Her communication skills and mobility (walking) are bringing down her average, if you will. But she's doing well and learning new things all the time and that's all that really matters.

The preschool coordinator was here for the annual review too, just to get us ready for that transition. We will have a couple more meetings with them in the fall to create Kinsey's IEP (Individual Education Plan) and make sure she gets all the services she needs in school. I'm also planning to visit the class one day in the fall to get a better idea of what school will be like for her. School is Tues-Fri for 3 hours in the morning. I'll share lots more information about school as it gets closer.

This week we also had a MOPS Pony playdate at one of the mom's houses! I wasn't sure how Kinsey would react since she didn't like the horses last time we tried horse therapy and these ponies were closer to the size of a horse than a pony. But, she liked it! She was having fun playing with the pony's mane and enjoyed the whole thing. After all the kids got to ride, they also painted the pony! I helped Kinsey with the paintbrush.


Waiting her turn (and trying to keep that helmet on her head) 









She also got to feed the goats!



Painting the pony.

This weekend (on Sunday) is Kinsey's pageant! She will compete in the birth to 4 age group. A couple of my friends are coming to cheer her on and Nicole will be there to take pictures and document the whole thing! I've got Kinsey's outfit all ready and I decorated her walker a little bit too. I'm excited! And Kinsey and I have been studying by watching Toddlers and Tiaras lately. She really likes to watch it actually and will come scooting over from wherever she is to get in front of the TV and will sit and watch practically a whole episode! I think she likes seeing the little girls and all the sparkles.

Anyway, that's it for this week. Here are some pictures that Aliy took at the beach last week:







 
This is my new favorite picture. She was having so much fun!  

A Trip to the Beach

This week was busy and there's not much to report, but we reserved today for some fun - we went to Windsor Lake with Aliy and her kids to go to the "beach." This was our first trip to a CO beach and, while it was nice and Kinsey still enjoyed it, it's got nothing on a real beach! Although I will say it's nice that it's only a few minutes away and it's not salt water. Here's a video and my pictures. Aliy took pictures too and I'll share them when I get them. http://youtu.be/9gAal2kTlzo















This week we also went to a free concert at a local restaurant with the winner of last year's The Voice, Cassadee Pope. We like to go to those because we can take Kinsey with us and enjoy some music together while we eat dinner. Anyway, while Cassadee was performing, Kinsey was standing on my lap dancing and Cassadee saw her and said hello to her from the stage. Kinsey is always catching everyone's attention! 

Last Friday was also a play date/photo shoot. Nicole came over with her boys and did some casual photos of Kinsey playing at the house. Here are the pictures: