MDA Telethon video Link

Here's the link to the video that Channel 2/MDA did on Maya and our family for the MDA Telethon.
http://www.youtube.com/watch?v=xEVI6KTOZkk

September updates below

I am getting worse and worse about updating the blog. You can thank my husband for that since I have had to play mommy and daddy the past several weeks due to Charlie's deadline at work. Here is what we were up to this month....

San Antonio trip to Sea World/Morgan's Wonderland - click here
Labor Day weekend/MDA Telethon - click here

Football Fan? - click here

Pregnancy Update - Week 33 - click here

Trip #4 to Salt Lake City - click here

Additions to the family:

We welcomed Kaitlyn and Kinley to our family on September 13th. The girls were scheduled to be born the week after, but a last minute trip to the doctor found bloood pressures and heart beats high so it was time to get 'em out into this world. Kaitlyn was 5.5 lbs and got an immediate thumbs up. Kinley was 5.2 lbs and needed to stay a night in the NICU. Before long she was with her sis and her big brother Mason (and the rest of the 20 Pringle and Kallus crew!). Maya was very excited to have two new cousins and loves to hold them. I am wondering what she will think when her baby brother finally does arrive. Will she get confused at all the babies or will she know this one is "hers". She asks to take home Addi and the twins so I'm sure she will ask to take Baby Brother home as well.

The Nursery:
Baby Brother got his nursery furniture this month! We just love the set we ended up with. Gayla came over with all the bedding and all its matching accessories and we started to get it set up. We went through the old bottles and tossed the pink and yellow and made room for blue and green! So I don't have a picture yet, but we are doing brown and blue as the colors and monkeys as the theme. The walls are painted, furniture is in the room. Now we need to put up some decorations and get all the baby clothes (probably 50 or so new outfits) from his Grandma Gayla. Once I get things done, we will post the finished product! Here is a sneak peek at the furniture (here) and the bedding (here).

Fun Maya stuff to share:

"Be careful! - When Charlie or I are driving and Maya is in the back playing with one of her toys in the back or having a snack, she has started to say "Mommy (or Daddy), BE CAREFUL!! Usually when we are going over speed bumps, or railroad tracks, when we start driving again after being at a red light. Recently, we have even gotten "be careful, slow down". Our little backseat driver :-)

Affectionate or Cunning?
I'm not sure when she made the switch, but one weekend Charlie and I noticed that Maya was overusing or maybe misusing the "I love you" phrase. She has always been the most affectionate little person we've met and we eat it up everytime she tells us she wants a hug. But now she is trying to use it to her benefit. Every now and again when she hears us getting ready for her cough machine or getting ready to put on her back brace or do her stretches, she says "I love you, Daddy" or "I love you, Mommy"..."come give me a hug". And then when you do hug her, she throws in a "awwwwww, love you, too". I guess she thinks we won't do any of that stuff with all this affection, but I hate to say that she was just delaying the inevitable. Doctor's orders...

Daddy's girl -
Maybe its because Charlie has been gone so much lately or maybe the phrase is just true. Maya misses her daddy so much when he is at work. She asks him in the morning to not go to work and to stay home and play with her. She doesn't do that to me!! On the weekends, she completely monopolizes his time and attention. "Daddy, you no go to work today...you play me in my playroom, k?" Its real sweet to watch them though even if she doesn't do it to me!

Let’s pray –
Kids say the funniest things and we wish we could capture it all on video. Jesus Loves Me is still one of Maya’s favorite songs and she associates it with praying I guess. We were eating lunch together one day and she looked at me, took my hand and said “mommy, let’s pray Jesus.” We put our heads down, closed our ours and then Maya says “Jesus loves me yes I know…Amen”, opens her eyes and there you have it. We said a prayer before lunch!

SLC Trip #4 - New doctor in town

We took our fourth trip to Salt Lake City to see Maya's neurologist. Dr. Swoboda is taking a one year research sabbatical, so we are now being seen by Dr. Sakonju. With my dad traveling, my mom selling jewelry and Gayla taking care of what seems to be a day care of newborns, Charlie and I took this trip with Maya alone. We had a free day with this trip and the weather was being nicer to us than the rare blizzard we had from last April. The circus was in town so Maya got an impromptu visit to the Greatest Show on Earth. She had a good time watching the show, but judging by the picture you can see she had more fun eating the popcorn!

Day 1 is the visit with the neurologist and research/study team to go over the past 6 months history. Then we do the EMG nerve study test. We were prepared to have Maya sedated with versed, but she does so horrible with the side effects that we attempted to go through the EMG without any sedation this time. Maya got through it like a champ! We had a little crying/whining, but no tears! The EMG uses a tool that zaps you and that is what is thought to be painful. No, not our Maya. She didn't think anything of the shock, rather she didn't like the tape they used to put on the wires. Go figure. The child life coordinator kept her busy with bubbles and she had her DVD player. 15 minutes later, test was done and no horrible side effects from versed. Yippee!!!  Totally deserved of a new toy, Maya! So the results showed that Maya is stable since the last visit. She did not have any (real) increase or decrease in her nerve activity. While they like to see the upward trend, the team was happy to see she didn't go down in her scores (She is 1.0 on the MUNE scale and was a 1.1 last time). Maya's growth chart shows she is 25% for height and between 10-25% for weight (estimated at 15%). They didn't get a chance to evaluate her diet that morning, but we will hear about that later this week. Like Charlie and I always say, the numbers are just the numbers. We can see that Maya has more strength than she did a year and a half ago. That is all we need.

Day 2 was Maya’s physical therapy assessment. We usually meet with Donata, but I guess she is semi-retired now and we now have Janine. They do the same test on Maya every time to mark her progress. Last time Maya took forever to roll over both ways but this time she did it in half the time! It still takes her a little bit to get it going but at least we can say that she can do it. They measure the degree of curvature of her knees and she has about a 5 degree knee contracture. They said we are doing everything we can – stander time, knee brace at night, stretches – but correcting that 5 degrees is pretty hard. I hate that it will get worse over time once she starts using a power chair. I wish there was something else we could do to avoid her knees from getting stiff. These are just the nasty side effects from not being able to stand or walk L The visit was actually way quicker than we expected. Donata usually tries new things with Maya as you can see from the previous posts. We didn’t do anything but the assessment this time and were in and out in about 30 minutes. I asked more about a back brace and what Maya could benefit from, but that is also a catch 22. She needs it when she sits, but if you use it too much, she could stop using those muscles and lose that function. Or if you don’t use it enough, she could slouch too much and develop scoliosis earlier. There’s just no good answer to all this bracing. Charlie and I find the back bracing to be the toughest to cope with. Probably because its hard to even change her diaper with it on (which also makes potty training tough!), or that her clothes with the brace have to be one size bigger than without the brace. If you ever wonder why she has so many clothes it’s because we have to keep two sizes of everything – with and without the back bracing. Maya really isn’t a big fan of it either so that makes it even tougher to put it on her. We keep reminding ourselves that it is for the best. Anyway, back to this visit, we didn’t find out the scores yet, but I hope to post it when we do. We still didn’t get her scores from the 3rd visit last April so hopefully we will get both this time.

Pregnancy Update - Week 33

I thought I should at least try to do one comparison to my pregnancy with Maya. I've gained around 22 lbs. If you look back at 28 week update, that's 9 pounds in 5 weeks. Yikes! I looked back at my diary with Maya and unfortunately didn't mark my 32 week weight. I am sure it was about the same though.  All was well on the front except now I am growing...everywhere! I can hardly recognize my body. I've never looked forward to nursing so much as I do now. At 7.5 months with this one, I look like I was 9 months with Maya. Here's the comparison from 6 months with Maya to 7.5 with Baby Brother. I hate showing belly pics, but its for the memories. Do yourself a favor and do not enlarge the picture. Charlie could hardly contain himself. He said my belly looked like a roadmap.

I feel about the same as my 28 week update, tired and finding it hard to walk around! I have felt him move for quite sometime now, but now the kicks and punches are getting stronger and a weebit painful at times. Its all in good fun and I am happy to be experiencing such things. Afterall, a man can't do it. HAHAHAHAHA! Charlie is home at a decent time now, so my evenings aren't as bad as they were.

We have not picked a name yet. I promise we are not hiding it like some people think. In fact I would love to say we were keeping it a secret because then that would mean we had a name picked out!

Football Fan?

In August, we took Maya to her first Texans game. She hasn't been to a football game since the Aggie game when she was 9 months old so we were a little hesitant to take her. Not after that day. We found out Maya is a closet football fan. Maya sat with me, Gayla, Bryce and Mason and she was cheering and yelling "first down" with everyone else in the stadium. It was the pre-season game against the Cowboys, so there was plenty of noise. She loved it and didn't want to leave. Since then, she has asked to go to football game everyday. She says "i go football game morrow, k?" Like as in not a question, but a demand. So, how could we not try out another Aggie game. We took Maya to the Sept 11th game and she did so well and had so much that we took her back again on Sept 18th. The last game she was able to hang out with her cousin Bryce. She enjoyed wearing the Aggie gear, eating a Freebirds taco during the game, and giving kisses to her daddy everytime the Ags scored. We got a future Ag here...she likes the war hymn, laughs when we sway during Hullabaloo, and chants "Go Aggies!!"  Even after 3 football games, she is still asking when her next game day will be. In the meantime, she is sitting nicely and watching football with her daddy on TV (and playing with SpongeBob of course).

Labor Day Weekend 2010

We started off Labor Day weekend by kicking off another Aggie football season. Charlie and I went to the game and Maya got to stay at the lake with her grandparents. The next day we had a fun get together with our friends and all the kiddos. It was a little crazy having all the kiddos but we all enjoyed a little pooltime and a BBQ. Maya had a great time and got to share all her toys in her playroom! Unfortunately I was so busy in the kitchen I didn't get any pictures!

Monday was the MDA Telethon. This year, we were invited to participate in the telethon by being one of the showcased families during the local broadcast. I mentioned this in an earlier blog but they came out to our house and taped Charlie, Maya and I about her diagnosis, living with SMA, and how the MDA helps us. We had to get there pretty early so Miss Maya wasn't exactly her perky self. At our broadcast time, they played our video and then were interviewed live by Lauren Freeman of Channel 2 news. Maya was a bit camera shy and just had a blank stare most of the time. We did finally get her to say bye to the cameras after the short interview. Lauren caught me by surprise with some of her questions, but hopefully we managed to come up with good responses. They didn't prepare us for what they would ask so we were a little nervous, too. We stayed for a picture with Lauren and Dominique Sachse (spelling?) and mingled with a few other families and sponsors. I guess Maya was a big hit because we got two invitations to attend fundraising events where they will show Maya's video and help promote the MDA.

San Antonio trip (Morgan's Wonderland and SeaWorld)

Maya, me, my dad and Renuka took a little vaca to San Antonio. I had been wanting to take Maya to Sea World and Morgan's Wonderland all summer and between Charlie's schedule and my dad's we finally got something on the calendar, but without Charlie.  August 31st to September 3rd.

On the way to San Antonio we stopped at the Wildlife Safari in New Braunfels. Charlie and I had taken Maya there two years prior, but this time she had quite a bit more fun. My dad did all the things you shouldn't like sticking Maya's head out the window and allowing the animals to come to your window to feed them.

I think at one point he even moved a herd of zebras by driving right through them. Don't worry, no animal was harmed....except maybe the ostrich. If any of you have been to this place you know what I am talking about with those ostriches. They are MEAN! Maya fondly (not) remembers the ostriches from this trip and still talks about how she is "scared of ostich".

Thursday we went to Morgan's Wonderland which is an amusement park made especially for special needs. There is only one of it's kind, but I heard that the owners have plans to build more all over the world. It really is a special place with wonderful volunteers. They have a few rides that you can put your wheelchair directly on like the carousel, but Maya was more interested in us picking her up and putting her on the rides. At least we know there is the capability for taking her powerchair one day.

We spent about 4 hours there and then took a little side trip to Austin to see my brother and the kiddos. Maya always has a good time with her cousins and this time she wasn't in their line of fire of throwing toys at each other, BUT the dragon castle was knocked over on her about 5 times. Sanjay didn't want to smile because he wanted to take his own picture of us.

Friday we headed to Sea World. Luckily a cool front came in and we enjoyed some nicer weather. We started with the dolphins. Maya wasn't a big fan of feeding them but I did and so the dolphins came close.

Lots of shows, meeting the animals, and her favorite ride...

 About 5 minutes after the Shamu show on our way out...sorry, Maya, no octupuses at Sea World!