A Busy Week!

This week has been very busy!

The new Physical Therapist started this week and she will becoming once a week to work with Kinsey (the old one was only once a month). I think she will be very good with Kinsey and we're glad she will be coming more often. We are going to focus on getting Kinsey to put weight on her arms since she doesn't really do that now.

Kinsey also started Speech Therapy this week. She was originally referred for speech for listening purposes since she has the hearing aid now, but I also asked about speech for feeding (since we still have some trouble in that area) so they are going to do 1 weekly appointment for both, 30 minutes on each. She has a specific therapist for listening and another one that specializes in feeding. The feeding therapist did a quick evaluation yesterday and said there are quite a few things we can work on - tongue response, chewing, her mouth is tight, etc. I really liked both of these therapists and think they will really help.

Kinsey's weight this week is up to 16 lbs 10 oz (another 5 oz gain in 1 week). Her thighs are super chubby!

Kinsey has completely recovered from the Croup, but since she had that she developed a rash on her face that just won't go away no matter what cream or lotion we tried. So the doctor gave us a prescription for a cream and also said to use Lotrimin on it. Hopefully that will clear it up in a few days. It's not bothering her at all, but it's peeling and red.

Grandma sent Kinsey some presents this week and she really liked all of them. One was an Elmo book. I gave it to her while she was sitting in her Bumbo and she actually started turning the pages (sort-of)! Here's a video of her "reading" her book: http://www.youtube.com/watch?v=AFIuwfLZKAM

That night I read her a story while she sat in my lap and she watched me turn the page then looked back at the right page - she did this the whole book. It was so cute!

Here's a video of Kinsey looking at the Elmo puppet grandma sent too: http://www.youtube.com/watch?v=hTwr7DxMWWc (starts off with the book and also includes Kinsey looking at the camera a lot - I need to disguise it so she doesn't get so distracted!)

This week we also decided to get the High Chair out for the first time. I wish we had done that a lot sooner - I had no idea it could recline! I thought we had to wait until she was sitting up to use it, but it turns out we could have been using it for quite a while now. I put her in it for the first time today and she really likes it! She actually seems to eat better in it, opening her mouth for the food, tilting her head back and everything.  - Here's a video of her eating in her high chair: http://www.youtube.com/watch?v=-nV_RvdobCQ

First time in her high chair

Speaking of eating, we were out of a restaurant and we gave Kinsey some of my garlic mashed potatoes and she loved them! Guess I need to make her some mashed potatoes (minus the garlic)!



Kinsey is wanting to sit up all the time now. When she's in her car seat she tries to pull herself forward (even though she's strapped in!). She won't sit in her carseat at a restaurant anymore, but she's not steady enough to sit in the restaurant high chairs yet, so I think we will start bringing ours with us (it's a small one that straps to a chair so that will be managable). That way she can sit up with us :)



Sitting in her swimming pool



Lastly, I'm disappointed to report that Kinsey's beach photo shoot had to be rescheduled AGAIN! Stupid hurricane passing by caused high winds and rain at the beach. Hopefully we will get it rescheduled soon and we'll actually get to do it this time! At least we're not gettin hit by the hurricane :)





Feeling Better

Kinsey is feeling much better this week. In fact, she gained back the weight she had lost by Tuesday and she's now up to 16 lbs 5 oz (that's a gain of 11 oz in 1 week!).

Kinsey had an appointment with one of her cardiologists this week - this one monitors the cardiomyopathy (thickening of the heart wall). He didn't do an echo to look at it because he said he could tell just from listening to her heart that it wasn't any worse, maybe better! He gave me some growth charts with Kinsey's weight and height plotted on the chart - 7th percentile for length, 10th percentile for weight and 50th percentile for weight-for-length!

We also got new hand splints for Kinsey this week. These seem like they will actually work. She does still pull out of them a little bit so we are going back for a possible fitting adjustment next week. I haven't gotten a picture of them yet, but will post one next week so you can see what these look like.

We met with our Hospice social worker this week to talk about resources we have to do something really special for Kinsey's 1st Birthday. She is referring us to an organization called Dreams Come True to arrange a "Special Moment." We are planning to take Kinsey to Disney for the day on her actual birthday, then have a party for everyone on the weekend. We are hoping Dreams Come True can set something up for us to meet the characters at Disney. Our social worker also said they could probably do some special things for her party too. We'll see what they come up with! It's hard to believe we're actually planning her 1st birthday! Trust me when I say it's going to be BIG deal! 1st birthdays are always special, but we all know this one is extra special :)

Last weekend Kinsey skyped with Grandma and showed her how good she's getting at sitting up. The computer screen (with Grandma and an Elmo puppet) caught her attention and she starred at it while she sat on her own for about 30 seconds! Here's a cute picture Grandma took of our skype session:

Not only is she getting better at sitting up, but she also wants to walk. Kinsey will put weight on her feet sometimes if you hold her arms and she also tries to stand up when she's sitting on your lap all the time. So Jamie decided to help her learn how to walk. He holds her up while she stands on the floor and she'll actually move one foot in front of the other - sort of :) She hasn't crawled, but maybe she'll skip that and go straight to walking. Here's a video: http://www.youtube.com/watch?v=XgxD061ogXk

That's it for this week.

9 Months Already!

Kinsey turned 9 months old this week! Unfortunately, she has been sick all week too :(

It started off as a little cough and we thought she was getting a cold. Monday night she was coughing so hard that she couldn't sleep. We tried elevating her head, sleeping in the swing (sitting up) and she finally got some rest with me holding her on my shoulder most of the night (which of course meant that I got no sleep). We took her to the doctor on Tuesday and they checked her for strep (negative) and sent us for chest xrays and blood work to be sure it wasn't anything bacterial.  Those all came back fine, but she didn't eat most of the day Tuesday and had a mildly high fever and we were getting worried that she was dehydrated. I was really worried we were going to have to go to the hospital for an IV, but she started taking more fluids late Tues/early Wed. We returned to the doctor on Wednesday and she finally diagnosed Kinsey with Croup (known for it's "barking cough). She slept most of the day Wed and was starting to get some energy back by that night. She's still tired and her cough sounds horrible, but otherwise she is acting like she feels ok. She's eating fine again too, but only formula. We'll try food again when the cough gets better.

On Sunday, Kinsey's weight was up to 16 lbs 1 oz, but after being sick all week, she's lost a little and is back down to 15 lbs 10 oz. She has grown though - up to 27 1/2" now!

That's it for this week. No pictures, just been focused on taking care of our sweet pea. Hopefully more fun stuff and pictures to share next week!

Getting Closer . . .

Kinsey is getting closer and closer to sitting up on her own every day! I've timed her at holding a sitting position for as long as 6 seconds now. She wobbles a little, but is starting to steady herself now. She can also pull herself up from a somewhat reclined position back up to sitting.

We had our consultation with the plastic surgeon this week and he actually doesn't want to do the surgery to repair her cleft until she is between 12 -15 months old. He said it's not necessary to repair it right now (any problems we're having with her eating aren't preventing her from gaining weight and growing so that's not a concern) and it's better to wait until she's older and will tolerate anesthesia better. (Although we know she can handle it since she had surgery already when she was only 3 weeks old.) Anyway, since 12 months puts us into the holidays, we're going to ask to wait to do it early next year. So no worries about that for right now. Hopefully we can just enjoy the next few months and the holidays without any major issues.

There's not much else to report this week, but here are a couple of videos:
Torturing Bailey: http://www.youtube.com/watch?v=WIyqM1qMDd4
Pulling on the Birdie: http://www.youtube.com/watch?v=WvKVIpkR6A8
Flying with Daddy: http://www.youtube.com/watch?v=Qf6DWEsShVo