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!!!!