20 month highlights

I don't think I ever posted Maya's stats from her last pediatrician visit. She actually went for her 18 month appointment 2 months late at 20 months. She weighed 20.5 lbs (<5%) and is 32" long (50%). They are not considering her too underweight right now, but we will continue to monitor. So here are a few other fun tidbits about Maya these days that I could remember to jot down:

Foods: Favorites are cremed spinach and anything Mexican, preferable quesadillas. She has given up on just about all other foods. We get in the occasional egg, bites of Indian food, and tostitos. We are having a pretty hard time feeding her actually. I have gone to making quesadillas at every meal! She absolutely under no circumstance will drink milk or eat ice cream or fruit. The milk thing has been since I stopped nursing but the fruit thing just boggles our mind. She used to love Gerber fruit so much that we had to limit her intake. Now she acts like it is poo and makes a yucky face when we put it in front of her. Toddlers!!!!

Toys: Maya was into Dora for a good couple of months, but all of a sudden she is now into Elmo and Barney. Elmo for about 2 weeks and then when Barney came along, it is ALL Barney. She calls him "BarBo" and insists on watching him all the time. Its gotten so bad that she won't let me put in her educational vocabulary DVDs anymore. I had to put my foot down a few times and only let her watch it at the end of the day. She is also into dollhouses and just loves the one at Hailey's house. We finally got her one and she only plays with the door. Open and close, open and close. OCD with things that open and close; lids on and off. She also loves holding her purse and I think she got it from watching me. She holds her purse just like I do!

Communicaton: Maya is talking so much more every week. We were worried there for a bit, but she is really coming around. You can tell that she understands every word and responds to all of our questions, but she's not a chatterbox like we thought she would be. We are working on names and picture association and often spend time in front of the fridge naming off family members.  I haven't counted her words, but she can say at least 50-100 words. Her favorite one lately is "No". Instead of yes, she will say "ah" as if she is responding in another language. She is still signing a few words, but she says them while signing now. It is SO much easier when you can communicate with your kids. I am actually enjoying this part so much. She lets me know when she is hungry, thirsty, or has a dirty diaper. What else do you need? She is starting to put phrases and sentences together, too like "I want more of it" or "You sit". Demanding.

New things:
- Maya has started drinking from a cup. She is actually pretty good at it, too. I am still a bit OCD about spills though and often get impatient with all the water going on the floor. I guess she won't learn if I don't ever let her!

- She is also blowing bubbles from the teeny tiny bubble bottle her Mimi gave to her. She is such a pro at it!

- Maya is obsessed with my hand sanitizer and washing her hands. I have noticed this is common in many toddlers. Everytime I use GermX, she says "wash?" and then plays with her hands like she is washing them.
- Bobos. I'm not sure how this got so out of hand, but I am the one to blame. The first "bobo" she got, I said "mommy kiss it?". She loves it so much now that I kiss her bobos that she insists on us kissing it 5 and 6 times. Everytime she will make her puppy dog face and sometimes a tear while she points to her bobo. Surprisingly this behavior has worked in our favor when she has had her blood taken. We kiss it over and over again and it helps her recover. She is just so cute and sweet you can't resist but kiss her all the time! Anyway, the point of all this is that she is learning new and interesting cunning behaviors. All her therapists comment on how smart she is - thank goodness we have some good news!
- Dada is moving up on the list of favorite people. She definitely gets sad when she sees Charlie leave for work in the morning, we often call Dada during the day after she calls out for him from time to time and when he gets home and the door chime goes off, she gets so excited and her face just lights up "Dada!!" Charlie is loving this of course. I'm okay with it, too, because I need a break by this time!

She is still a happy kiddo and full of love for her family. She gives out lots of hugs and kisses and we enjoy every minute of it! Its actually a game we play as to who gets a kiss from her and who doesn't. I can't believe she is going to be 2 this year. My how time flies!

Unite for the Cure

Hey everyone we have another favor to ask (yes, they will continue until Maya is cured!) Well, this one was particularly near and dear to us so we couldn't help but get involved. Charlie and I have committed to raising $5,000 by the end of November to support funding for the stem cell treatment program, which could go to clinical trial as early as January 2010. What does this mean exactly? We are talking about a possible CURE here people! Yes, we are SO close. But they need funding. Dr. Keirstead's group at California Stem Cell (CSC) is getting ready to meet with the FDA to get approval for a human clinical trial for SMA. He is also the same doctor who got approval from the FDA to do stem cell treatment for spinal cord injuries. 20 families, including Charlie and I, have united to raise $5,000 each by the end of November. SMA has been designated as the neurological disease, out of 600, closest to a treatment/cure. This could help other diseases too!

We know times are tough for everyone, but every little bit counts. We plan on getting involved with other fundraising activities over the next three months, but until then, please spread the word! All donations are tax deductible :-)

I hate saying "Help Save Maya", but honestly that is what this stem cell treatment program could do. So far it has been successful with mice and we've seen the videos. If it works in humans, it could prolong Maya's life and/or enable her to walk one day! This is what we have been praying for!

If you would like to make a donation in Maya's name (and read more about the cause and the 20 Uniters), you can click on this link: http://UniteForTheCure.com/Donate/ It explains all the directions for donating by credit card or check. To make a donation by credit card you will go to this page and then click on the green donate button, which will then take you to the Families of SMA donation page specifically set up for Unite For The Cure. Please remember to write "Pringle Family" in the "Message" section, so that we can keep track of our goal. For checks, please make checks payable to “Families of SMA” and be sure to write “Unite For The Cure/Pringle” in the MEMO on the check, so that this donation goes specifically to the Unite For The Cure campaign and to our overall goal. You can mail checks to the address below. Cash is okay, too, but please don't mail that!

Unite For The Cure
c/o Gwendolyn Strong Foundation
27 W. Anapamu Street, #177
Santa Barbara, California 93101

We can't thank everyone enough for all the love, support and prayers. Maya is everything to us and we want to do all we can to help her.

PLEASE FORWARD the link to everyone you know! There is a short bio of Charlie, Maya and I on the website.

Its been a while (long post!)

Sabbatical from KPMG also means sabbatical from blogging I guess! Sorry for the delay in posting. Let's just say I've started too many projects...

Since Costa Rica last July, Maya and I have been busy going to therapy, bonding over meals, and watching Dora, Elmo, Barney, and a few educational things here and there. It's been so hot that we hardly go anywhere! That is SO unlike me! It's been fun though - hanging out with Maya.

A few tidbits here and there (by week):

Week of July 27th
Maya's Occupational Therapist from ECI had her last visit with us this week. She is retiring and ECI does not have a replacement, so we have a find a new place for her OT. We visited Nani in SugarLand on Thursday so that I could get all my CPE in by the 31st. I literally took classes ALL day. That's how behind I was on my education credits!

"Poo poo"
Maya has started saying "poo poo" when she has gone #1 or #2. As you can imagine this has been extremely helpful! Not like you can't smell her across the room, but still, it helps. Maya also let's us know when she is hungry - she points to her mouth for the sign for "eat" and also says "eat". Next, she tells us she is thirsty, "wa wa, wa wa, wa wa".

Week of August 3rd
Monday was Maya's 6 month follow up with her PM&R doctor, Dr Wechsler. We are very excited about going since this is the main doctor to write prescriptions for all her equipment needs. We went over a lot of items, some good, some bad. 1) Maya's hamstrings are started to get tight. So she showed us some exercises to work on with her. Other tight areas are her wrists and arms/triceps. 2) Maya's right hip is starting to pop in and out. She is also turning it outwards too much, which is bad because she needs to keep it straight and knee cap up. The doctor recommended an Xray to confirm the degree of popping/separation and to also start using a knee/hip splint at night. Poor Maya has to be invaded by therapy in her sleep too! We also got a prescription for a new OT, and a wheelchair eval. Unfortunately, the Dr wouldn't write a script for the exact wheelchair we wanted for Maya...that is a whole other story to be posted later.

Trip to Dallas
On Thursday Maya and I headed to Dallas to visit several friends. We stayed with Heather and Ryan (prior to baby) and visited the Keith's and Hemingway's new additions.

Babies R Us incident (beware to those with weak stomachs):
While in Dallas, Heather, Maya and I headed to Babies R Us to help Heather buy the rest of their baby registry. Not 5 minutes in the store and we smelled something. Sure enough preggers was right. Maya had pooped. I just figured it was a quick and easy change, so I just took Maya and the car keys to the car to change her. I did not take my phone. As I was walking out of the store, the smell was getting stronger and stronger. I recall changing positions with her in my arms. I get to the car, open the back and as I was laying Maya down, I saw it. Poop on my shirt and my hair was in it!!! GROSS! Then I saw that Maya had an explosion - the worst she has EVER had. It was EVERYWHERE!!! Coming out her shorts from top and bottom, the left side of my shirt was completely covered, as was the top of my shorts. And of course my hair. It gets worse. I put Maya down and as I did that, "plop". The sound of poop hitting my foot. I had to take all of Maya's clothes off, I had no back up clothes for her or me, and limited wipes. As to be expected, Maya then decided to touch her leg and then I proceeded with "NOOOOOOOOOO". Too late, poop all over her hands. Did I mention that I didn't have my phone? I was desperate to call Heather and even considered stopping someone in the parking lot - but then I remembered that I didn't know her number by heart. Stuck outside in 100 degree weather with poop all over me. Nice. I wiped Maya as much as I could and tried to find something to cover myself up with. The only thing I could find was her high chair cover. I propped it on my left side (to avoid spreading) and put Maya over my shoulder and went to get Heather. "We need to go, right now". Drove to the house, with high chair cover on my chest, and finally had a Mommy and Me bath. Funny looking back on it. Charlie and I discussed what he would do in that situation. I think he decided that he wasn't going out with her alone!

We visited Corsicana on the way home and had lunch and playtime with Nanny, PapPaw, Carla, Vince and Jamie. Maya acquired another one of Jamie's toys. This time it was a washing machine toy. She still plays with it everyday! Maya had a great time with all the dogs this weekend. She definitely wants a dog! We've already told Shawn and Amy that they can begin the search for another Harley dog for us!

Week of August 10th
Charlie celebrated his 30th birthday on the 15th. We celebrated by having friends over at the house, Rudy's BBQ and a Baskin Robbins ice cream cake! It was alot of fun and we were glad to see all the kids interacting with one another. We also managed to get out for a dinner date while Grandma took care of Maya.

A few other fun things that happened this week: our A/C went out (again), we visited the orthodics place for Maya's hip band and knee wraps. I interviewed 2-3 candidates for caregiver for Maya.

Week of August 17th
Maya's 18 month appointment (at 19 1/2 months old) - Maya weighs 20 lbs and 7 oz, she is 32 inches tall, and has 12 teeth - 8 on top and 4 on the bottom. She got 3 shots that day and continued to tell me about her "bobo" the rest of the week. Everytime she saw me she had to tell me about it, of course it also involved a cute little face and a little tearing up which always made me ask her if mommy could kiss it and make her feel better. I am such a sucker!

Maya tried a couple of wheelchairs this week. As I mentioned before, we can't get a prescription for the 8 lb wheelchair that Maya could easily push herself around in, but we found something almost as light - 16-18 lbs (see pic below) She looks so small in it, but this is just a trial and clearly not her size! Since there are really no other options for a lightweight pediatric wheelchair, it looks like we are ordering this one. It should take 8-10 weeks to arrive. If it doesn't end up working out, PawPaw Bill has offered to buy the 8 lb Panthera wheelchair for us!



This week so far:

A new year, a new class:
At church on Sunday, Maya moved to the Ducks room. She is now with other kiddos her age. For the past 6 months, we kept her in the 6 months class, but now Maya has a shadow to help her in class and make sure the other kids don't knock her down and to keep her safe as well as able to participate with the other kids. I am so grateful for this shadow program that I signed up to be a volunteer for it, too! Here's a pic with Maya and her dad after church.


Mother's Day Out
Maya started MDO today. She went back to Spring First Church. The teacher there was okay with Maya in her classroom and she knows she has to give her a little extra attention. The program is from 9-4 on Tuesdays and Thursdays, but we are going to try 3 hours each day so that she can keep her stander schedule and therapy schedules intact. Maya really needs to be around other kids so we hope this works out! She did okay this morning, but then a little girl came and snatched a toy out of Maya's hands. There was no calming her down after that. I had to pull out our lifesaver - the bubbles! She had a good time there today and we just hope this works out!

TLSO
We had Maya's appointment today for her modified-TLSO. Don't ask me what the letters stand for - but it is a brace. Just like she has braces for her ankles, this is a brace for her chest wall/back. It won't delay the scoliosis, but it will help support her posture. She slouches so much when she sits so we need to help counter the effects from her body being like that all the time. We get it in three weeks - I am shocked!

As for the plans for the rest of the week: we will be meeting another SMA family, Marie and Baby Ava, she starts with her new OT this Thursday, and on Friday we may head to Austin to see my brother and their new house.

Tweet for a Cure - Need your help!

Hey there blog readers! We need you to help spread the awareness of SMA to our Congresspeople so that we can get more supporters for SMA legislation. Please visit EndSMA.org/twitter (click here) and "tweet" for a cure. It will take about 30 seconds (maybe 3 minutes if you have to register on Twitter like I did). Spread the word.

Also, we've been meaning to post this since the SMA conference. The quickest way everyone can help find co-sponsors to the SMA legislation is to call. Here are the steps and should take no more than 5 minutes:

1. Contact the Capitol Switchboard in Washington, D.C. (202-224-3121) and ask to be connected to the Member's DC office if you don't already know their direct number (LOL!)

2. Identify yourself as a constituent and briefly explain your purpose for calling. For example: "I am calling because I have a family member/close friend who suffers from Spinal Muscular Atrophy, the #1 genetic killer of young children, and would like for you to cosponsor the SMA Treatment Acceleration Act."

All phone calls are “tallied” by the staff, so even if you do not receive a written response to your phone call, you will have had an impact. However, when you call, you may request a written response.

Maya thanks everyone for taking the time to do this for her :-)