2009 Year-End Review

You know you're an accountant when you have a post that says "Year-End Review"....

Charlie and I are ready for 2009 to be over and planning for a better 2010. What a challenging year it has been for this family. While there have been several hundred wonderful and memorable great moments, Maya's diagnosis and all that came with it haunted over us most of the year. As I am making Maya's 2009 photo album, I started going through this year's events:

In January we had Maya's first birthday party with a 100 of our closest friends and family! Two weeks later on January 14th, we received the most devastating news about Maya having SMA. The next few weeks and months were a blur but luckily for Outlook, I was able to keep up with the rest. I couldn't even find myself to click on January 14th on the calendar because it just brings out the bad memories. At the end of January, we needed a little pick me up and celebrated my brother's grand opening of his practice in Round Rock.

February brought 2 and 3 doctor's/therapy visits per week and the start of tax season. I continued my schedule at work and looking back on it, I am happy I did. It would have been too hard emotionally to have taken off from work, but it came with its own problems. I just didn't have enough time to keep up with all the appointments, phone calls, follow ups to all the 10 doctors and therapists for Maya. She needed her own secretary!

In March, we headed to Salt Lake City to see Dr Swoboda in hopes of her giving Maya a trial medicine for SMA. We were devastated all over again when we found out Maya's motor neuron report and how much she had progressed. According to the report, she only had approx 13% of her motor neurons left. She had lost the rest from birth to15 months, putting her as a weak Type 2 SMA patient. We gladly begin the Valproic Acid and Carnitine treatment in hopes of putting the progression off and getting her stronger. We started shopping for standers and Maya got her first set of ankle braces (AFOs).

In April, Maya began aquatic therapy clear across town. Charlie and I got a break by taking a trip to Vegas with the Keiths and Browns to celebrate turning 30 this year.

May was a pretty fun month for us all. We begin in Austin celebrating the birth of another nephew, Kavi. My brother's fourth! Over Memorial Day weekend, we headed to Dallas and Corsicana for the annual lakehouse trip with friends (and all the new babies) and then to see the family in Corsicana.

In June Maya finally received her very own stander. She had already practiced her two hour daily stander time routine with a loaner, but now had her very own. Maya also received her cough assist machine and suction machine this month. We attended our first Families of SMA conference in Cincinnati. It was here that I realized how good we had it with Maya. Everytime you think you have it rough, there is a family that has it worse. We are so very thankful for Maya's mind and being able to watch her eat and she can communicate with us and play with her toys. Not all parents, SMA or not, can say that. At the end of June, we were happy to have my cousin Mona and two aunts visit. We spent a few days in Austin and Maya got to enjoy her cousins there.

July was a very exciting month. Charlie got promoted to Sr Mgr. I started my three month sabbatical to take care of Maya and all her needs for therapy, equipments, doctors, etc. Unfortunately, I got sick the last week at work (thinking swine flu) and spent my first week off quarantined from Maya. We took a family trip to Costa Rica. It was a trip of a lifetime! It originally began as a look-see trip for Charlie, Maya and I to check out the stem cell clinic there, but became a family trip with Charlie's family. Amy and I celebrated our 30th birthday and Bill celebrated his 60th that week. I surfed for the first time and drank and sang enough to last years! The visit to the stem cell clinic was very useful, but we decided it wasn't the right time to go through with it.

In August Maya began her six month follow up visits with all her doctors which would extend into September. Charlie was in the height of his tax season so Maya and I played alot on the weekends. We visited Ryan and Heather in Dallas before they had Brooke the first weekend. The second weekend, we celebrated Charlie's 30th birthday with friends at our house. In August, we began the search for Maya's manual wheelchair and she got fitted for her TLSO (back brace). I had begun the nanny/nurse search this month too.

September travels....the first week of Sept, Maya and I joined Nani and Grandpa in Kauai. Charlie had to stay behind and work. During the trip, Charlie and I had put an offer on a house and went through the inspection process (while I was in Hawaii nonetheless). Also in Hawaii, I took this time to start Maya's respiratory care. I am sad to say it took us this long to start, but really it was the best time since Maya was pretty sick the entire trip. So goes the twice daily cough assist machine and as needed basis for the nebulizer and suction machine. Quite a task that we finally accomplished. Between Hawaii and the second Salt Lake City trip, Charlie and I continued the house purchase and put our house on the market. Mid-Sept was the follow up visit with Dr Swoboda where we learned that Maya was still in active progression state of the disease - not the good news we had hoped for. However, her physical therapy results increased and we decided to go with that good news and stay with the medicine for another 6 months in hopes of her strengthening and warding off anymore progression/weakness. The very next weekend I was on a plane to Delaware for my cousin's wedding. Charlie stayed behind with Maya (at Gigi's house of course!). College football season began.

October begin with more traveling. We visited Dallas and new babies the first weekend.
Maya got her TLSO brace this month as well as all sorts of other equipment like her bath chair, her knee immobilizers and hip band. The next couple of weeks were spent packing and moving as we closed on the 15th and moved in on the 24th to our new house. We finished renovations on Maya's room and bathroom. We also received an offer on the old house two weeks after posting it. Oh and I how can I forget. I went back to work on the 13th. Not fun. I was pretty upset about going back this time as I had gotten so close to Maya and it was very hard to leave her. Maya's new caregiver, Yvonne, started with us and has been a great addition since. We closed October out with unpacking boxes and enjoying Halloween with our ladybug!

November was just as busy travel-wise. Charlie and left for training on the 1st, came home for a day, and got an a plane to Denver on the 5th to visit Grandma and Alan/Denise. Val and Madi joined us for the snow-filled trip. Just when I thought I would be able to settle in our new house that next week, we finished up cleaning the old house and closed it on the 13th. Charlie and I headed to Lake Charles that evening to celebrate our 5 year anniversary. We finally unpacked all the boxes the week after and it was time for Thanksgiving already. Charlie went hunting the night of Thanksgiving and Maya and I spent the weekend with Gigi and Papaw and started Christmas shopping.

December flew by. Maya began aquatic therapy in the Woodlands early this month, the same day it SNOWED in Houston! Like a blizzard in downtown Houston, with just a few snowflakes at our house. Christmas shopping, house shopping and planning Maya's 2nd birthday party soaked up most of December's days. She enjoyed Christmas alot more this year and learned how to say "Ho Ho Ho" everytime she saw Santa. Maya received her first wheelchair and a new chapter of her life had begun as she turned 2 on the 29th.

Looking forward...
Goodbye to free flights. Maya went on 7 trips this year! Mayo Clinic, Salt Lake City #1, SMA conference, Costa Rica, Hawaii, Salt Lake City #2, and Denver. Phew! Next year, perhaps an overseas trip to India or Europe. We gotta take advantage of being able to travel with Maya and get her around the world!

The only thing Maya did not get this year was a baby brother or sister. Maybe 2010 we can say she did....Happy New Year everyone!!!!

Happy 2nd Birthday Maya!

Today our Maya is two years old. Happy Birthday baby girl! I am still calling you a “baby” until there is a new baby :). Today Maya spent half the day with her Gigi since Charlie and I were still working in the house and the painters were there. She didn’t start out the day very well since she had a 101 fever. So instead of treating her to a Mexican restaurant, we brought her some lunch, chicken verde enchiladas. She started feeling alot better by the evening time. Her party is on Jan 3rd, but we went to ITZ to celebrate the actual day. My cousin Sonal and her 2 kids came with my dad and Renuka, as did most of Charlie's family. We made tonight a Dora night and got her a Dora cake and Dora doll. She was pretty excited to see Dora and Boots on her cake! Maya had such a ball at ITZ and on all the rides. We had to peel her away from the arcade area! Luckily no fever the rest of the day. Click here too see all the pictures.

2 year highlights

I still can't believe that I have a 2 year old! My how time flies. This post is mainly for Charlie and I, but it is a good read if you want to know about Maya's personality.

- Counting. Clearly Maya knows how to count to 10, but she refuses to actually count every number from 1 to 10. Instead, when I ask her to repeat the number I am saying, she will say the next number in queue. For example, I say "1" thinking she will repeat "1", but she says "2" instead. Then I say "3" and she says "4" and so on up to 10.

- Favorite holiday. Christmas wins. The day the tree went up, she has insisted on sitting right next to it. At Gigi's house one day, she told everyone how pretty the tree was (keep in mind there were no ornaments on there at the time). Since then it has been all about Santa and Ho, Ho, Ho's all day. Even after Christmas she is still saying "santa" and "ho ho ho".

- Making animal sounds. We have been teaching Maya various animals with their sounds. So far she has monkey, lion, duck, cow, and cat down. We say the animal's name, have her repeat it, and then ask her what sound that animal makes. We are still working on the sound for pig and frog. Right now she just laughs at those sounds.

- Medicine. Well the good thing is that she doesn't fight the medicine taking anymore. Prior to the visit to Salt Lake City in September, Maya's main medicine was sprinkles that we had to hide in her food. Since she fought that so much, we opted for the liquid version. Now she likes it so much that she has a fit when we are done giving her medicine, mainly in the evenings. She says "medicine" very well and often asks for it. Strange, huh?

- Clothes: Under two years old and already getting picky about the clothes she wears. Not everyday, but every now and again, Maya will fuss about what we are putting on her. She wants the red pants over the brown or the white socks over the black. I think these girls are starting earlier and earlier with the fashion!

- The affectionate one. Oh how our Maya is so loving. We often have rounds and rounds of family hugs and kisses. Now she will pull your face towards hers and put her arm around you when you are sleeping. It is just so cute (and comforting). We love taking naps with her. She will almost always end up right next to you even if she was in the middle of the bed to start with. She just wiggles towards you!
- Laptop. I must spend too much time on my laptop in front of Maya because one day she was playing with her pink Vtech laptop on her stander and I was on mine. She started moving her hands real fast around the play keyboard as I do when I am typing. Now everytime she gets on the laptop, be it hers or ours, she play types and has to make the sound that mommy makes like she is typing away!

- Dora chair: This is a marshmallow type chair that she started out liking at her Gigi's house. Oh my goodness, the drama if she can't sit in it. We ended up buying her two of them for Christmas just so she would have one in the living room and the playroom. We even had her Nani Renuka put a Dora pillow on the back of her wheelchair so that she would be interested in sitting in that too!

- "Gigi house" and "Gigi rock": Maya loves going to her Gigi's house. We will be driving in the subdivision and she will say "Gigi house". I just can't believe she already knows the entrance to the neighborhood! One day, we went there to pick something up real quick and didn't take her out of the car. She was so upset and cried. Kept on saying "Gigi" as we drove away. Sad (but Gigi secretly loves this show of affection!). The "Gigi rock" is also special to her grandmother's house. When you are putting her down for a nap or bedtime, she has to be rocked. And of course it has to be a certain rocking chair. One time Gayla sat in the other recliner and Maya said "No" and pointed to the other recliner. Oh and I can't rock her there. I tried and then 5 minutes later she says "Gigi rock?". Let me tell you that no rocking goes on at home. She goes right to "night night" at our house!

- The bootydance. So Maya loves to dance and unfortanately can't dance like we all can. Besides shaking her upper body, the best dance is her booty dance. When we change her diaper and tell her to dance, she shakes her booty.

- Elmo: Maya has a small Elmo beany she plays with ALL the time. A couple of weeks ago I was driving her somewhere and she started to say "No No Elmo" and "Ouch". I looked back there and she had her finger in Elmo's mouth and was making him "bite" her finger. She was saying ouch and telling him to stop even though she was the one that was doing it. Funny. She did it again with one of her baby dolls recently.

- Shy girl? Maya doesn't seem like the shy type, but recent events are showing this side of her. I've been noticing it more and more now. When Maya is in front of a crowd and we ask her to do something, like say pacifier or count to 10, she looks at me and grabs my hand and says "Hi". At her birthday celebration, I got it on video. We were asking her to blow out her candle and she was shy in front of all the people looking at her to blow it out, so you can see her grabbing my hand and saying "Hi". Its actually quite comical right now.

- Lollipop. Finally, after 2 years of going to the pediatrician, Maya had her first taste of a lollipop. We had to convince her to take the first lick, but when she did she went to town. We said "Maya, do you like it" and without a second, she said very clearly "I LIKE IT!" Then she immediately bit it and spit it on the floor. I'm not sure where she is learning about this spitting thing...Mimi.

Other tidbits:

- Measurements: 23 lbs 7 oz. (10th percentile) and 33 inches tall (25-50% percentile). She is still mostly wearing size 18 months, her shoe size is 4, and she just now started size 4 diapers. She almost has all her teeth - looks to be missing a few on the bottom.
- Favorite toys: Her favorite toys these days are the Little People dollhouse that she plays with from her stander or sitting in the Dora chair, she loves to color, she likes to "read" books, and play with stickers. She also loves to "wash" her hands in play sinks and her new play kitchen.
- Favorite DVDs: Anything Barney and Dora. We, of course, mix in some educational DVDs every day, too, like the learning to read one. Gotta do it!
- Favorite songs: I Love You by Barney. Over and over as many as 20 times. Never gets bored. You would think that she could sing it on her own by now! Itsy Bitsy Spider is still in the top 5, among a couple of Christmas jingles.
- Sleeping habits: Maya is sleeping at night from around 8:30-9 pm to 8-8:30 am. She is down to one nap a day.
- Likes and dislikes: hates changing her diaper lately, LOVES washing her hands, loves playing with Charlie's reminder bands (Madi's for leukemia and Maya's for SMA)
- Favorite foods - As many of you moms of toddlers know, food is now the most stressful part of the day so this section is rather long for a good reason. She still loves her Mexican food and Indian food, although she has moved on a bit from the quesadillas. Chicken enchiladas with verde sauce is the most favorite, while for Indian food it is usually all of what we can offer her. She is really into omelettes and sometimes she will even eat two a day! We just have to put cheese in it and sometimes salsa. We have "convinced" her to start eating some Gerber fruits again. We have to force the first bite which sometimes involves lots of tears and then the "more it" tells us that she just puts up a fight just because but really loves the fruit. She refuses to eat real fruit. She actually just grimaces at it like its the worst thing ever we put on her plate. Snacking wise, she loves popcorn and this greek yogurt that she eats with pita chips. Cross our fingers, she appears to be increasing her food choices in the past 2-3 weeks. Over the past few weeks, we got her to eat rotisserie chicken (by ITSELF!), chicken parmasean, plain yogurt, and pasta. AMAZING! She hadn't eaten like this since we got back from Costa Rica in July. She still will not drink milk, but she did resume the juice drinking again (she had stopped all but water for a couple of months) and now loves the V8 Fusion Mango/Peach flavor. She still doesn't like sweets all that much. Didn't even eat her own birthday cupcake!

Christmas 2009

Maya was pretty excited Christmas morning to find that Santa Claus visited and left her all sorts of presents for being a good girl. Unfortunately, excitement became crying because she wanted to play with all the toys and take them out of the box. Lesson for next year - open and assemble toys and then wrap them so that they can play immediately. I think alot of you parents know what I am talkin' about! Kids have no patience! Santa did well and Maya was very pleased. We finished up our family Christmas at home by having breakfast and making some side dishes for the big lunch.

We headed to Gayla's house for lunch and the grandkids Christmas. Bill and Gayla have a HUGE Christmas as you can see below. Wow. That is alot of wrapping for just one grandmother! After the mass present opening ceremony, we played Deal or No Deal where Maya won $60 and Charlie and I won $200 and finished out the night with Chinese Christmas.

This Christmas was definitely more exciting as a parent. Last year, Maya was so young so she didn't open and get excited about much. This year was quite a difference. She really got into it and it made the spirit of the season that much better. Thanks to all her grandparents and uncles and aunts for the presents.

See all the Christmas pics here.

Unite for the Cure - Results

WE DID IT!!! Not only did we surpass our individual family goal of $5,000, but the Unite for the Cure campaign has brought in over $120,000 to help fund Dr. Keirstead's stem cell program. Our family total came to $7,185!!!  How did we do it? Well, I sent all of you an email on August 27, 2009 and in three months, 55 donators have participated in this cause! This is pretty amazing considering that we did not host a fundraising event.

Charlie and I can't thank you enough for your generosity and continued support for helping us find a cure for SMA. We truly believe the cure is within reach and we long for the day Maya will be able to stand/walk and be independent.

By the way, this was pretty exciting to hear about. Dr. Keirstead and his team were named in Esquire magazine as one of 2009's Six Radical Projects That Will Change Science Forever. You can read the article here:  

http://www.esquire.com/features/best-and-brightest-2009/human-embryonic-stem-cell-research-1209. This is the man we are donating to. He has so much to offer and we want to thank him, too, for the inspiration to help find a cure for all these kids. Recently, on Dec 8th, the company was granted orphan drug designation from the FDA to its stem cell-derived motor neuron product. What an important milestone and positive step forward for the SMA community!

THANK YOU to all our family and friends for helping us with this cause!

Maya's Wheelchair

Today Maya received her first wheelchair. After three and half months of waiting for it to come in, it finally arrived. It is the lightest weight chair we could find, besides the one from Sweden, and its made by TiLite. I don't know how much it weighs but definitely light enough for Maya to move around in. It was a bitter sweet event. On one hand I am very sad to see that our daughter is getting a wheelchair, but on the other hand, we have been waiting so long for this and it will be a new chapter of Maya's life as she tries to get around in it. It was kind of fun watching her today as she tried to find the wheel and push it- she kept pushing a part of the chair thinking it was the wheel. She had practice using the loaner wheelchair from the MDA, but this one is pretty different and much lighter. Now that we have it, we will have to alter her daily schedule once again to include time for her to be in the wheelchair. It will take her a few weeks to get used to moving it around.

In the pictures below, the tech from the wheelchair company is testing the chair out on her and in the second one, Maya is excited to be able to almost reach her toddler sink in her bathroom.