A Lot To Catch Up On

Sorry it has been so long since my last update. I really don't have any excuse, just never sat down to do it. We have had visitors, therapies, doctor appointments, Halloween and plane rides since the last post so here it goes.

Hi Everyone!


October

At her 1 year check up Kennedy weighed in at 19 pounds and was healthy with the exception of the muscle issues, of course. Still not big enough to turn the big girl car seat around, but that's okay. We are going to keep her rear facing for as long as we can. The pediatrician suggested we do that and I think it is better for her with the lack of neck control she has sometimes anyway.

It looks like I have two little ones since we still have the carrier in the van as well. I still use it when we got out to eat or grocery shopping. She can't sit up in a restaurant high chair or a shopping cart yet. I'm not sure what we're going to do when she outgrows the 22 pound limit on the carrier. Guess we'll cross that bridge when we come to it.

Towards the end of October my mom came to visit for a week. Unfortunately, she fell at work the day before she left and spent most of her time laying on the couch while she was here. Looking back she probably should have postponed her trip because she was in a lot of pain while she was here. She is finally feeling a little better and was able to go back to work right before Thanksgiving. Hopefully when we go up there in 2 weeks she will be able to get on the floor and play with Kennedy since she missed out on that while she as here.








October 21st was Kennedy's first neurology appointment with the new doctor down here. We weren't very happy with her neurologist in Fort Worth so we were anxious to get a 2nd opinion. Mom was planning on going to the appointment with me since Danny was supposed to have a swim meet. Luckily, he didn't have to go to the meet after all because Mom wouldn't have been able to go with me because of her back. I'm not a fan of going to neurology appointments by myself because I am usually a wreck when we leave just thinking of all the what-ifs. Dr. Stucco ordered a bunch of tests to look at the way Kennedy processes sugar, proteins, etc. and a couple of genetics tests so we could have the results back before our genetics appointment in December. All of her "processing" tests came back normal! YEA! I'll get the the genetics tests later.

The end of October brought Kennedy and I back to Mansfield. Unfortunately, it was under sad circumstances. My good friend, Charlene, lost her battle with pancreatic cancer. Charlene was Kennedy's "Texas Grandma" and we visited her often when we were living in Mansfield. She ordered finger puppets and fun things for Kennedy to play with while she was there. She told her stories and sang to her. This was something we knew was coming, but it doesn't make it any easier to deal with. The funeral was amazing and it was great to see how many people Charlene had touched. I have no doubt there were people at the funeral that had never met Charlene in person but felt like they had because of someone else that knew her.

This is from our trip to Mansfield in September. So glad we were able to see her one last time.



Okay, enough with the sad. Kennedy was a sock monkey for Halloween. She loves her sock monkey that she got from Santa last Christmas. Danny had a swim meet on Saturday (Ghouls in the Pool Invitational) and the plan was for her to dress up as the sock monkey and sock monkey was going to wear her "my daddy's the coach" shirt. We didn't get to do that because Kennedy and I had to go to Mansfield for Charlene's funeral so we just dressed her up on Halloween night and took pictures.



November

I was so excited when Kennedy's hair was finally long enough for pigtails or piggies as my niece, Makayla, calls them.







The first part of November I signed Kennedy and I up for the Bugs class at The Little Gym. I thought it would be good for her to be around other kids her age since she doesn't go to daycare. We go once a week until the middle of January. Not sure if we will continue or not because it is so dang expensive. Maybe we'll wait until spring and sign up late and just pay the prorated rate for the rest of the semester :) Anyway, she seems to like it. She can't always do what the other kids are doing but if she can't I usually just do something similar with her that we are working on in physical therapy. She especially loves the music! It is hard work though and she usually falls asleep on the way home.




Kennedy started saying Daddy/Dada. At first it was only when she was eating Cheerios, but not she will say it without them. YEA! Still working on a clear Mommy/Momma

The middle of November Kennedy had a Speech Evaluation. I was not real happy with the Speech Therapist because she was saying things that were completly out of her speech speciality and out of line as far as I was concerned. I have talked to the director of ECI (early childhood intervention) and we are working on resolving the issue. Anyway as of now we have the ECI Developmental Specialist coming once a week and we are working on speech stuff with her. This week we are working on Ball, Baby and Dog. She doesn't say Baby but she sometimes babbles with the same inflection as we are saying baby. She's getting there!

McDonald's host a big basketball tournament every year in Pasadena. It just so happened that some of the metroplex(Dallas/Fort Worth) teams play in it. A good friend of mine, Steph, had her team down here. Steph was the person that I first coached basketball with at Wester. I like to say she taught me everything I know :) Anyway, she had her varsity team down here so Kennedy and I were able to see all of their games for the 3 days they were here. It was a "dose of home" that I needed.

The weekend before Thanksgiving The Hubbards came to visit for a few days. While they were here we went to Kemah so the boys could go to the amusement park and to The Battleship Texas. After we got home Zander said, "this was the best day of my life" so I guess he had a pretty good time. Kennedy LOVES Lucas and when I say love I mean her face just lights up when she sees him. I told Shelly that she needed to video him talking to her and send it to me so I can play it over and over. Both boys had her giggling within minutes of walking in the door as you can see. Again, another "dose of home"



That's Zander and Danny in the back


Danny took one for the team and rode this with Zander. He's not a fan of things going around and around. Not sure why he liked the rollercoaster. Oh well.


Getting some good snuggles


Zander trying out the 'guns' on the ship


The Hubbards


That's Kennedy and I on the left. Everyone else was up about 4 levels.


Chris & Lucas checking out the equipment



We spent Thanksgiving with Danny's family in Indiana. I made sure to remember the battery charger for the camera, BUT forgot the camera :( We flew in Wednesday night and had Thanksgiving day with his mom, stepdad, sister and brother-in-law. Friday his aunts, uncles and cousins came to his mom's house for another big meal. We definitely had our fill of yummy food while we were there. Saturday we spent the day hanging out with his mom and stepdad and his sister came over to visit. We left Saturday night.

November 30th Kennedy had her follow-up eye appointment. I'm not exactly sure what these measurements mean, but zero is the best. Kennedy was at approx a 20 in September and is now at an 8, so NO GLASSES! WooooHooo! We go back in February for another check-up to make sure it is staying that way or getting even better.


December

December brought us back up to Mansfield again for Christmas Tea with Polly and Athen. This is an annual event and one of the first things that Polly said when I told her we were moving was, "You'll come back for Tea, right?" We wouldn't miss it. Kennedy was not so fond of Santa at this point. I will say that she was getting tired and we were about to leave, but it still made for some cute pictures.






While we were there we also took advantage of the weather and went to the Fort Worth Zoo. We went with Chrissy and Breck Boydstun and Courtney, Samuel and Jack Helm. The kids had a great time and it was nice to see Courtney and Chrissy!

The zoo was a little cold when we first got there.



Yesterday was finally Kennedy's genetics appointment. We were lucky to be able to get in "so soon" but it is still a long time to wait from August to December. Anyway, about those tests I mentioned earlier that neurology ordered. This is how the doctor described them to us...
The first test was like looking at a book shelf. We just want to make sure all the books are there. We are not looking for missing pages or misspellings or sentences out of order.
The second test is looking at the books. We just want to make sure all the pages are there. Again we aren't looking for misspellings or sentences that may be out of order.
All of Kennedy's books are on the shelf and all the pages are there! YEA!
They also did a test to rule out Fragile X Syndrome. It came back normal too! YEA!
Now we are doing tests to see if all the words are spelled correctly and if the words in the sentences are in the right order. They took blood yesterday and we should have the results in a couple weeks. One has to be sent to Mayo, one to Baltimore and one is being done at Texas Childrens in Houston.


That brings us to today...FINALLY! I think I have learned my lesson to not let such a long time go between blog posts.

Overall, Kennedy is going really well. She has started eating more 'real people' food. Beans, spaghetti, Spring Creek brisket, chicken & veggies and even got a Chick-fil-A french fry yesterday. She is getting stronger and stronger every day. She can sit up when she uses her hands as a tripod for several minutes, which she couldn't do at the beginning of November. She is "talking" more and more every day. She rolls a lot more to get from one place to another. AND she keeps passing every test the doctors can throw at her!

We hope everyone has a great Christmas! We will be heading to Wisconsin in less than 2 weeks! Can't wait!!!!!!

Medical Update

Here is the update I promised last week.

We have a new pediatrician in Pasadena that we like. She is very open to all of our questions and takes the time to talk about things when we have appointments. I never feel like we are rushed out of the room. She has referred us to Texas Children's for specialist (ophthalmology, neurology and genetics).

We met with the ophthalmologist in September and she said Kennedy does have some minor eye crossing called strabismus. It is not uncommon in babies, but she should have outgrown it by now. She is also a little more far-sighted that she would like to see, so we are looking at possibly putting her in glasses. We go back in December (maybe earlier if I change the appointment) to see where she is. If it isn't better then we are going to do the glasses in the hopes that it fixes the far-sightedness and inturn "forces" her eyes to uncross.

While Kennedy and I were on the plane on the way to Wisconsin in August a lady sat next to us and said, "Hey there little girl. You must be about 10 months old." I said she was pretty good because she was 10 1/2 at the time. She then goes on to tell me that she is a pediatrician at Johns Hopkins. Are you kidding me? What are the chances? So for the next hour we talked about Kennedy and the things she could and couldn't do as well as her trip to Northern Minnesota that they were going on. She recommended 3 blood tests (2 for muscle enzymes and one for vitamin E). She gave me her card with phone number and email and told me to let her know if I needed any help with anything. Super nice lady! We had those 3 tests done when we got back and they all came back normal. I emailed her to tell her the results and she actually wrote back to me and again told me that if I wasn't happy with the specialists we have to let her know and she would work any connections she had.

3 more things to check off the list. Kennedy's current diagnosis is benign congenital hypotonia (low muscle tone that she was born with that isn't causing her harm). Unfortunately, this condition is a diagnosis by exclusion. There isn't anything that says this is what it is for sure...we just have to rule out other things. It can be frustrating because we are constantly wondering if there is another test we can do to rule out something else. Hopefully our appointments with neurology (Oct. 21) and genetics (Dec. 9) can help us with this. We would love for nothing more for it to be benign congenital hypotonia that she will grow out of with the help of physical and occupational therapy.

I really think that God moved us to the Houston area to get the help that Kennedy needs. The physical therapist already has her doing things she was never able to do before, we have a pediatrician that we like and Texas Children's is one of the top hospitals in the country.

Speaking of therapy...she is doing really well. She was never able to do this before. In the picture the therapist is helping her with her arms, but most of the time she is able to push up on them all by herself if we hold her hips. This is a big accomplishment for her!! Of course, she always has to show off for the camera.



We also do a lot of baby sit-ups with her to strengthen her abs. Just yesterday she started tucking her chin when we do them. This is something we have been working on since the beginning. It doesn't sound like a big deal, but try to do a sit up while keeping your head back. She was making it a lot harder on herself than it needed to be. Now that she is tucking her chin she is working on those ab muscles around her rib cage which will really help her sit up better.

We have also been doing hip raises. This week she started understanding when we said 'up' that we wanted her to raise her hips. Yeh!! This made up very happy that she was comprehending things. What a smart little girl!

As of now we are doing PT twice a week and occupational therapy once a week. Occupational is very similar to physical at her age, but OT will work more on her fine motor skills like picking stuff up with her fingers and bringing them to her mouth. We have a speech evaluation in November. She 'talks' but isn't consistently saying things like mama or baba. Here is a little video on her talking to me after she ate.





Part of OT is hand/eye coordination. Who knew a balloon could be so funny and helpful at the same time. :)



She is eating some big girl food now, but isn't really feeding it to herself. I usually "help" her pick it up and bring it to her mouth. She does fine with the chewing and swallowing, just can't get it there by herself. Of course, she does have 8 teeth so I'm sure that helps.

Now that she is 1 we have moved her to whole milk and seems to be doing okay with it. We have had a couple big spit-ups but not too bad. Yea for not having to buy formula anymore!!

One of the things that we found out in the MRI she had this summer was that she had low mylin (fat around her neurons). The more mylin you have the better the motor skills. They can't really tell if her motor skills are low so her mylin is low or if she has low motor skills because her mylin is low. The doctor told us that DHA can help develop mylin so we have tried to find foods that have DHA in them. Formula was her big source of this, so now that we moved to milk I had to do some research. I searched for toddler foods with DHA and found that Horizon makes an organic milk w/ DHA. Bonus, except that it is more expensive (still cheaper than formula though)! They also make a yogurt called yotoddler that has it as well. Plus a lot of the organic Gerber baby foods have DHA in them. I think we have her covered now. One of those things that can't hurt and hopefully will help.

So that is where we are for now. Hopefully by Thanksgiving and Christmas when we see a lot of you she will have a lot more "tricks" to share with everyone.

Here are a few more pics since her birthday.

Kennedy turns ONE!

I can't believe it has been a year already...actually a year and 35 minutes. :)



We had a good day today if you take out the part about the shots at the doctor this morning. I know, I know...who schedules shots on the actual birthday? Oops! She weighs 19 pounds and got a good report from the doctor aside from the obvious things we are still working on with PT and OT.

After the doctor we went shopping at Kohls with a giftcard Danny's mom sent her. She got some much needed 18 month clothes and the blocks you'll see in the pictures. Then we got Chick-fil-A and brought Danny lunch up at school. It was nice to see him in the middle of the day. We need to do that more often. Then it was a quick stop at Walmart to pick up cake. After that it was lunch time for Kennedy and then a nap. The evening was a lot of fun as you will see in the pictures. She wasn't quite sure what to think at first. She didn't like the feeling of the frosting on her hands at all! After she got over that she went to town. Kennedy, the cloth cover (that I forgot to take off beforehand) and the highchair all got a bath after it was all over. Everyone (and everything) is all clean now :)

Danny has his first swim meet tomorrow and Kennedy and I are going to go to the Farmer's Market before we head over to the meet. Definitly a fun weekend.

Like I said...I can't believe out baby girl is one. I got an email today from babycenter.com and it said "Your Toddler" - where did the last year go??

I'll update in the next few days about Kennedy's medical updates. Today is all about her Birthday!!

Can you believe that Walmart only charged me a penny for that cute cupcake 1st birthday cake? It wasn't a mistake. They told me it was free when I ordered it but I guess they can't just give it away.




This is awesome...I can't wait for Christmas!


BEFORE


DURING










AFTER


She apparently thought that Daddy needed some 'hair gel' :)

Happy Birthday Daddy!

All settled (almost)

We moved August 2nd and everything but the spare bedroom is unpacked. That is this weekends project. My goal was to have everything unpacked by the time Kennedy and I left for our Wisconsin trip. We leave a week from tomorrow, so I should make it.

Danny is officially back to work today. He has been working up there this week getting things clean out and stuff. There was a lot of unneeded stuff in the closets, etc. They put new floors in his office and painted so he hasn't been able to do anything in there yet. He is hoping he can work on that by Monday.

Kennedy and I are adjusting to our new place and trying to get into some sort of routine. We have been going on adventures during the day to check out our new town.

Some nights in the evenings we drive around looking at different areas to see where we may want to buy a house next year. We are in an apartment for now. At the time we weren't sure if we would sell our house in Arlington so we couldn't get into another one and we didn't want to buy somewhere and then realize that it wasn't in an area we want to stay long term. The good news is that we SOLD OUR HOUSE in 3 weeks! We close next week so only had to pay double mortgage/rent for August. We definitly lucked out...it is a huge stress lifted not to have to worry about it selling.

Kennedy is still working on her exercises 3x a day. Sometimes she does well...sometimes not so much. I'm waiting to get plugged into a new physical therapist. Hopefully that will happen soon. Until then she is doing Mommy PT. She is still as happy as ever. This morning she was actually laughing when she woke up. She has the cutest giggles!

Like I said Kennedy and I are going to Wisconsin next Saturday. I'm very excited to get up there. We haven't been this summer at all. With 115 degree heat index down here...definitly looking forward to some cooler temperatures! We will get to meet the newest member of the family, Jillian, and see Aaron race while we are there. I'll have a post about our trip once we get back.

That is about all for now. Here are some recent pictures.

Just a few pictures

For those Blog Stalkers out there. As you can see on a lot of the pictures, she knows when the camera is out and shows off her smile for me!