Happy (Early) July 4th . . . and other news

Last weekend we had a July 4th mini photo session with a new photographer and they were really great. Here are some of the pictures:

Kinsey is getting really good at standing while holding onto something! It's really impressive to watch how well she's doing and you can really tell that she wants to stand and walk on her own really badly! One thing that she's really gotten good at recently is using her hands to hold on to provide balance. The first time she really did this was at Gymboree about a month ago, but just in the last week or so her grip has gotten really strong and she holds on really well. Before we always held onto her hand and she could pull herself up to sit or stand that way, but now she will grip your finger tightly with her hand and pull. It's amazing how quickly she progressed in this area.

In fact, my dad built Kinsey a really cool wooden rocking horse/chair that he just gave her this week and she immediately decided it's a better standing toy than a rocker! Within a few minutes of sitting in it for the first time, she was grabbing the handlebar and pulling herself up to stand. She stands in it more than she sits! And she's so proud of herself when she stands up, making little grunting sounds and laughing. I love it!!! Here's a video: http://youtu.be/AmOtYIiaLWM

Standing and & Smiling

Standing and drinking water from Daddy's cup

She's also using her arms and hands more in general now than she used to. She always puts her elbows out behind herself to brace when she falls backwards from sitting and she's really, really, really trying to figure out how she can use her arms to sit up. She doesn't complain when she's on her back and trying to sit up so I let her try for a long time before I will help her. She's getting closer every day! She's also getting better about rolling over from her stomach to back. We've known she can do it for quite a while now, but she still cries that she's stuck most of the time. Just this week she's gotten better about remembering that she knows how to get out of that situation and has been rolling herself over without complaining! In fact, this morning she was sleeping on her stomach and when she woke up she rolled over and started to play (like always) and never complained at all!

Kinsey also continues to be more adventurous in her food choices lately. Last weekend we went out for sushi - no Kinsey did not eat sushi, but she did it the tofu that was in my soup! She even ate it from chopsticks! She really seemed to like it. We bought some to give her at home, but haven't tried it yet. Her favorite restaurant food is still refried beans - she will eat an entire side order herself . . . and that's after eating her baby food! Have I mentioned lately that she really likes ice cream now too? And she's also eaten little bits of pasta on occasion. Here's a picture of Kinsey eating tofu from chopsticks:

As I've been watching her stand up more, I've been looking at her feet and realizing how difficult it is for her to get her balance. I never really thought of it this way, but now I truly see how her feet are "rocker bottom" - she pretty much stands on her heels and rocks on them. I tried to stand up on my heels and it's nearly impossible. It's amazing she stands and walks as well as she does! I am very hopeful that the foot surgery will be as successful and remarkable for her as the cleft palate surgery was. That made such a huge difference for her and improved her quality of life so much and I so wish we had done it sooner. I hope that the foot surgery (after the long 10 week recovery) will do just as much for her.

I'm also terribly nervous about this surgery for some reason, much more so than I was with the cleft palate surgery. Maybe it's because the surgery is longer or it seems more complicated. Or maybe it's just because everything is happening at once (with the house closing the same week as surgery). Maybe it's because there have been too many T18 angel babies recently (I am part of a Facebook group for T18 mommies and there have been a lot of new babies that haven't made it lately). I am just slightly terrified that something will go wrong. I'm sure she will be fine, but I can't wait for it to be over and for me to know that for sure, not just try to convince myself of it.

The cardiologist has cleared Kinsey for surgery so there's no reason to worry. I am going to have a pre-surgery consult with the anesthesiology team just like I did last time to be sure they are aware of her heart conditions and use all the right drugs. I know they know what they're doing, but I just have to make sure!! %

 

Speaking of the surgery, I found this information online about Kinsey's foot surgery and thought everyone might find it interesting/helpful: http://orthoinfo.aaos.org/topic.cfm?topic=A00612. Kinsey's foot condition is called Vertical Talus (or Rocker Bottom feet). The problem is caused by the Talus bone (which basically forms the ankle bone). The pictures and xrays of feet in this article look just like Kinsey's feet. We are obviously doing the surgical treatment option.

This weekend we are getting together with some old friends of Jamie's and going for Thai food - I wonder what Kinsey will find to eat there!

Surgery Scheduled and Fun with Gramma

The doctor's office called and we have Kinsey's foot surgery scheduled for July 19th. That's 4 days after we close on our new house! It will be a very stressful time, but we'll work it out and get through it. I'm worried about the surgery because they've told me it will take 3.5 hours! That's a long time for her to be under anesthesia and a long time for me to be worrying about her!!! Hopefully I'll be able to get updates from the nurse like I got when she had surgery back home. Either way, it will be a very long day, but it will be good for her and hopefully it will be her last surgery :)

Gramma is visiting this weekend and Kinsey is having lots of fun with her! Today we went to Gymboree together and Kinsey had a great time, as usual. Here are some pictures:

Look how cute the new dress I made looks on her!



Tomorrow we're headed up to Fort Collins to take Gramma to see the new house and we're also going to check out a new photographer with a mini session with a July 4th theme. Hopefully we will like her.

Last weekend we decided to take Kinsey in the pool at Aunt Sandy's place - she wasn't wild about it but that could be because she hadn't taken a nap or maybe because she hadn't been in the pool for about a year and wasn't sure of it. She warmed up to it after a while so hopefully next time she will like it right away like she used it. Here are some pictures:

Kinsey is really working on eating more solid foods. She is eating some Stage 3 foods, which are "chunkier." I tried these a few months ago and she wouldn't have anything to do with them - she would gag on the chucks, but now she seems to be moving the food around in her mouth better and doesn't have any problem with it. She's also eating more solids, even though she still doesn't chew things very well. I've been putting finger foods (like the baby puffs, teddy grams, bread, toddler biscuits, crackers- these all dissolve in her mouth after she bites off a piece) on her high chair tray and letting her feed herself - something she really seems to want to do more of lately. She does a pretty good job with them and she really wants to eat "big girl" food more, but she needs to learn how to chew! We have started giving her more options, like soup at Panera, muffins, ice cream - oh and she LOVES avacado now!.

Anyway, here's a picture of her being silly and attempting to eat corn (but there was no corn left on this cob). And here's a video of her trying watermelon for the first time- she actually tried to eat it a little: http://youtu.be/GLwH7mW7U9U

Finally, here are a couple of cute pictures of Kinsey playing with Daddy:

Wearing her Farmall onesie and playing with Daddy & Emma

19 Months and Surgery in the Near Future

Sunday was Kinsey's 19 month birthday - she's getting so big!

She's getting better and better at standing while holding onto something - we keep practicing a lot. Here's a picture of her standing in her pack and play this morning (don't mind the bed head).

And a video too: http://youtu.be/_EARKs5VKPc

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This week we learned about a 22 months old boy in PA who has Down's Syndrome and needed heart surgery to survive. Unfortunately the surgery didn't work and doctors are giving him weeks to live. His mom created a "Bucket List" for him that included doing simple things that every child should get to enjoy - one of them was to have a Banana Split. Somehow this went viral and people around the world were enjoying banana splits in his honor. So we joined in and ate a banana split! Which reminds me, ice cream is one of Kinsey's new favorite treats!

This week Kinsey also had her first appointment with an orthopedic surgeon here in CO. Actually we went to see 2 of them, but the first one referred us to another one who does what Kinsey needs more often. So today we went to see the new Dr at the Children's Hospital and she was really great. She reviewed the information from Kinsey's old doctor and took some new xrays of her own.

You may remember the old doctor wanted to do serial casting for 6-8 weeks to stretch out the tendons in her feet then surgery to fix the bone followed by 4-6 more weeks of casts. He was in the hurry to start this because the older a child gets the more "established" their bones get and the less successful the process. Well, the new doctor agrees with him about getting her feet corrected sooner than later and she doesn't think we should waste time on the serial casting for stretching. She said Kinsey's tendons aren't very tight and thinks the time it would take to try to stretch them a little isn't worth it. Most of the time the tendons still have to be surgically released after casting anyway.

So she wants to go ahead with the surgery as soon as possible and her procedure following that is a little different too - 6 weeks of a cast up to her thighs then 4 weeks of a shorter knee-high cast. Simply correcting one bone in her foot will correct the shape of her feet completely -flatten the top of her foot, give her an arch, straighten out her heel. This will help with her standing and walking because she will have a better surface to stand on.

We don't have anything scheduled yet, but she said we could get it done sometime next month. Which is actually great because Jamie's company is changing our health insurance (again) in August and we've already met our deductible and out of pocket maximum for Kinsey for the year. We are closing on our house on July 16th so that could be a conflict, but if it is we will work around it. Of course I'll keep everyone posted on the plans.

That's it for this week . . .



A Busy, Busy Girl!

Kinsey had a busy, fun week! We went to Stroller Strides and Gymboree a few times, took a drive up to Fort Collins to show Pop-Pop our future home, and did a whole lot of playing :)

I don't think there's much to report this week, but I do have lots of videos and pictures for you to enjoy:

Learning to be a gymnast: http://youtu.be/sZ4hZjwJNdo

Walking around the kitchen (she always heads straight for the towel on the stove): http://youtu.be/jEYlVjGo2nA

Standing on her own at Gymboree: http://youtu.be/YhBnfFRE-pc

Playing ball with daddy and Bailey: http://youtu.be/4VXYKST6nHA

Rocking at Gymboree:  http://youtu.be/08hw-Gjfl-c

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Playing with her shoes instead of wearing them

Riding on Pop-Pop's Shoulders

Playing with the Gravel in the driveway of our future home

At the Zoo again - visiting the Rhinos

And taking a look at the big elephants

Standing in her walker, but playing with the toys on her jumper

"Flying" at Gymboree

Sleeping - I love the positions she sleeps in

 

Fun Around Colorado

We continue to explore our new home state - on Memorial Day we rode the light rail into Downtown Denver and went to an art festival on the 16th street mall. Kinsey really liked riding the light rail and watching everything go by outside the window. Here are some pictures:



We found a Cow Parade cow downtown, so of course I had to take a picture with it.



Last weekend we also went into Fort Collins for the day and went to some of the antique (junk) stores and walked around for a bit, then went into Old Town and walked around and had dinner. It was a really nice day. Here are some pictures of Kinsey shopping at the antique mall:

She was doing a really good job of holding onto this kid-sized shopping cart.

This week Kinsey had her first appointment with her new cardiologist at the Children's Hospital. He did an EKG, but didn't do a new Echo since we just had one done a month ago before we left FL (I gave him a CD of her last 2 Echos from the doctor and he looked at those along with all her records). He didn't have anything new to say about her Cardiomyopathy, but he did have a new take on the Wolff-Parkinson-White Syndrome (fast heart rate). . . He said (from looking at her old charts) that he didn't think the WPW was still there. It is possible for it to heal itself and her old doctors told me that, but they said that wasn't happening with her. But this Dr. said the last Holter Monitor Kinsey wore (which detects her heart rate for 24 hours straight) didn't show any irregular heart beats and he thinks that means it's gone. I asked him about the fact that she was taking her medicine the whole time she wore that monitor and that's why it didn't show anything irregular, but he said the medicine wouldn't have prevented strongly irregular beats from showing up. I'm confused because that's exactly opposite of what the previous doctor told me, but I'm willing to give this Dr. a chance.

So, he's suggested we cut back her medicine to the same dose, but twice a day instead of three times a day for the next 3 months. Then he wants us to cut it back to 1/2 the dosage twice a day and see her a month after that. He will do a new EKG and Echo then and we'll see what the results are. So that's what we'll do and see what happens. . . .

While we were at the Children's Hospital, we found another cow parade cow:

Tonight we went to a restaurant where they were giving the kids helium balloons. We were sitting right by the front where they were making the balloons and Kinsey was watching them very intently. We got one for her and she was really interested in it - we tied it around her wrist and she kept pulling it down to play with it all night - all the way home in the car too! Here are some pictures:

On another note, things are moving along nicely with our new home - we had the inspection and there was nothing unexpected in the report. The current owners just had $6,000 of new windows installed on the house today and they look great. They are having their auction on June 16th to clear things out and we will be going to that - Jamie wants some of their tools!

That's it for this week.