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.

Say "pacifier"

We finally decided to take video of Maya saying "pacifier". It has amused so many people that we just had to capture it on video for the memories. See her here. Next phrase, "bye bye pacifier!"

Giving Thanks

This Thanksgiving, we would like to thank all of our family and friends for their continued support of our family. Without you guys, this would have been a much tougher year for the Pringle clan. With your words of encouragement, prayers, and support we made it through a very challenging time. As Maya continues to need the support of all her family and friends, we know that all of you be in our lives to help us in your own ways. And for that, we continue to thank you.....

5 years

This weekend Charlie and I celebrated our 5 year wedding anniversary by selling our first home together and going to Lake Charles for a little getaway. The actual anniversary is the 20th. We will surely miss the house on Reynolds Creek since this is the first house we purchased and welcomed Maya into the world. We've had so many special moments in the house, good times and sad times, too. I am sure we will make more good memories at the next house!

Denver

Charlie, Maya, Valerie, Madi and I took a trip to Denver this past weekend. Charlie's aunt and grandmother live up there. We had been planning this trip since last February I think! It is no coincidence that it fell on the same weekend of Aggie  football!

Thursday when we got there (and all our 10 pieces of luggage!) we had dinner out and unwinded at the house. Denise and Alan have 2 dogs. Jake and Priss. Maya of course had a ball with the dogs. Jake was a bit too exciting for her, but I think she still enjoyed all the attention he gave her.

Friday we headed to North Pole, CO. Home of Santa's Workshop. What a ball we had! They had all sorts of rides for the kids. Maya and Madi had so much fun and we did, too. It was a bit cold (we were in the mountains after all) so the girls were all bundled up. We decided not to take Maya on some of the rides that go in circles real fast and I'm glad we didn't because it got us all nauseous at some point. We also took some pictures with Santa and in front of Santa's house.

Saturday Charlie and I headed to Boulder for the A&M vs CU game while the rest of the clan stayed in Denver. All the girls visited Grandma and had a relaxing day. The A&M game was pretty exciting. Unfortunately, the Ags lost in the last 2 minutes of the game. How we gave up that lead I am still not sure. What a heartbreaker of a game. Believe it or not, Charlie recovered pretty quickly and managed not to let it affect the rest of his day (he's come a long way!). Charlie and I visited Grandma on the way back from Boulder and brought her back to Alan and Denise's house for a home cooked meal.

Sunday we packed our bags and looked for snow. It was time for a snowball fight. Luckily we didn't have to travel too far and found a great patch of snow right in front of the subdivision. We had a big snowball fight, Charlie and Madi seemed to be each other's target, and then some sledding. We didn't anticipate the sledding, but it just happened. I wanted to put Maya on the ground to take pictures of her in the snow, but I didn't want to put her directly on the snow. Do I take the fun out of it or what? So we used her rain cover from her stroller and put it on the ground. It was slipping and sliding everywhere. What better to do with it than sled. The video here says it all....

We are so glad that Val and Madi decided to join us. Maya and Madi play so well and love being with each other. There is often a meltdown from Maya when it is time to go and she has to say bye to Madi. Lots of tears. Oh the love for the cousins! It was a memorable weekend and we had a great time with family.

August thru October pics

Updated pictures of the fam are posted on http://thepringles.myphotoalbum.com/albums.php. A couple of videos are on there too.

Maya and Hershey

Maya visited her new best friend this weekend – Hershey. This is her Uncle Mark and Aunt Michele’s dog. I wasn’t there, but judging by the pictures, Maya would love it if Hershey moved in with us! The first one is my absolute favorite. Just look how happy she is!! Makes me smile ear to ear.

Happy Halloween

This year Maya dressed up as a bumblebee. She was so excited about her costume. When I tried it on her the night before Halloween she kept smiling at herself in the mirror and when we took it off, she said “no no” and did her little index finger in the left and right motion. The headband was her favorite part! I felt so bad because we didn’t play up Halloween this year like you should with your kiddos. We didn’t even take her to a Pumpkin Patch! It was just way too busy with the move to even think about extracurriculars, but at least we made it to the trick or treating part! Charlie and I went to the A&M game and left early to get our little bumblebee house to house. We met up with Valerie, James, Madi, James, and Jackson in their subdivision. Maya had a great time going door to door and especially liked it when she was allowed to pick the candy herself. She enjoyed taking all her candy out of her bag and putting it back in the bag. As you may know, Maya doesn’t eat sweets, so it was pretty fun to watch her looking at all the candy, asking us to open it, and as soon as we did, she said “no no”. Oh well, more for me I guess!

Lots of changes this week

We are officially the owners of a new house today! Charlie and I closed this morning and have been busy packing up our house. We have a contract on our current house and should close on November 13th. It only took 2 1/2 weeks for this house to get 2 offers, so we are very happy with the timing of everything. We will be starting a little construction work on the new house tomorrow thru next week and then get it all cleaned up and ready for move in on the 24th. The big stuff goes that day and I am sure we will take the remaining 3 weeks to get out of the current house. We are very excited! We have a pool now (right in time for the winter HA!) so everyone can come over and play!

Another big change this week was my starting back at work. What a great time to start back, too, two days before a deadline. I was immediately busy and already working tonight! Boohoo! I go back to work with mixed emotions but Maya is in great hands with her Gigi (new name for Grandma Gayla). We hired a nanny, too, and she should start next week I hope. Lots of changes over the new few weeks for the Pringle clan!

Unite for the Cure - Update

We are excited to say that we have raised $4,315 for Unite for the Cure! With more than a month and a half to go, we are well on our way to meeting our $5,000 goal. THANK YOU SO MUCH!!!! We have wonderful friends and family (and their friends and families) who have made a huge impact on our family by helping with this cause. I still want to have a fundraising event but if you know our schedule these days you would understand why we can't take on anything else. If anyone has any ideas, throw them my way!

Sleep study

Maya had her sleep study last night. For those unfamiliar, a sleep study involves testing brain waves (EEG), heart (EKG), breathing (oxygen levels and carbon dioxide levels), and something else I can't remember at the moment. Anyway, we got Maya's done for the breathing function. To determine if she needs help at night while sleeping using a machine called a BiPap. We have been waiting 6 months for this test!! We arrived at Texas Children's hospital at 6:30. I am sure it was fun to watch me run through the waiting room in an effort to avoid getting coughed or sneezed on! After settling down in our room and putting Barney on for Maya, they begin all the taping of the probes at 7:30. It took an hour and a half. Maya screamed of course, but thankfully Barney and her new baby doll aided in the calming down tactics. I had her in my lap and she held her baby in her lap. It was funny because even though Maya was crying this entire time, she never forgot that her baby was taking a bottle and would continuously give the baby her bottle. 9 pm bedtime for both of us. She woke up a few times during the night freaking out, but all in all she did great. They woke us up at 6 am, took the probes off and headed home by 7. You can't see in the picture, but she had red marker all over her, in addition to the glue, so she went straight to the bathtub when we got home! About 1 week for the results.

Orthopaedic Dr

We took Maya to a new orthopaedic doctor today. The last one, see the post from March, was a complete jerk, so we finally found a new one. Dr. Antekeier seems pretty knowledgable about SMA kids. He used to measure kids for bracing, so luckily he know the medical and clinical side of things and was very helpful to us. Good things came out of this visit that made my bad day from last week a little better. We had to take xrays of her spine and hips so that he had a baseline. Basically he said that Maya is doing good, but we need to tackle the curve she is getting from her slouching. He sounded much better than the guys last week, but possibly sugar coating it for us. It worked. He is going to see if we can modify her brace so that she can have a soft front and a hard back. Right now it is hard all over. We need to modify it enough so she can still sit and feed herself and play. All very important things. All in all we liked the new guy. We are going to see him again when Maya gets her new wheelchair so we know if she fits it correctly.
p.s. thanks to all of you for your comments and prayers from last week's emotional meltdown. I know we will all get used to it. I guess it was just time for a good cry!

21 months old

Today Maya is 1.75 years old. It takes an accountant to put their child's age into a decimal point, but you guys get it. Only 3 months until she turns 2. I really can't believe our "baby" is going to be 2. The terrible 2's are starting early though. Wish us all luck. Its going to be a bumpy ride. Alot of "no" from her lately. Actually, I would say that is her favorite word these days.

Maya gets a loaner

wheelchair. Now, should this be a happy day or a sad day? Right now, we are excited about it. Its like getting a new toy for Maya that she really enjoys. Since we are only using it in the house right now, we don't feel as down about the reality of her being in a wheelchair. She is still cute as heck! I didn't take any pictures, but click here to watch the video of her using it.

Maya's 1st first haircut

I was going to post this as her first haircut, but really, we only cut her bangs so I don't think this qualifies. When we cut all her hair, I imagine it will be called her 2nd first haircut :-)

We had them cut on my "Bad Day" from last week and I am just now posting. We went to Cool Cuts for Kids and Maya so excited when she looked inside from the window. She saw the Dora video on and the little cars the kids get to sit in. Excitement quickly turned into crying once the apron went on and they spraying water on her hair. I had to hold her head so luckily the whole thing only lasted a couple of minutes. I wasn't ready to cut the rest of her hair, but now she kind of looks funny so I think we need to go back and get the rest trimmed. I am just so scared to have it trimmed! It took SO long to get it this length, you know? Anyway, here are the pictures.

                                                                 

Bad day

Today I had one my most emotional days since January when Maya was diagnosed. We picked up her TLSO, or scoliosis brace. I knew that Maya slouched when she sat, but I didn't know quite how bad she had gotten. According to the rep at the brace store, she is pretty young to be slouched so much (vs other SMA patients). They naturally slouch, but she has a more defined curvature already. This means that the scoliosis will likely start earlier than others. SUCKS!!!!!!!! Then they put it on her. I started tearing up right then and there. She is so uncomfortable in it. Its not like the cough assist machine where she is scared of it but then it goes away after 5 minutes. This she hates and has to wear it all the time. So far, the only other thing she is impacted by during the day, all day, are her ankle braces. She doesn't even care about them though and actually likes when they are on. I don't even notice them that much on her anymore. The TLSO is different. Right now, she can't even sit independently with it on. She cried so much today that I wondered if it even allowed her enough room for breathing. She doesn't have to wear it while she is sleeping or in the car seat (since it is reclined all ready), but other than that, she needs to be wearing it. This is going to take some challenges. There is an undergarment to be worn under the brace to prevent chaffing. She is going to get so hot. And what do we with her clothes! I put her dress on over it this evening and I cried some more. She just looks SO different with this thing on. It makes me so sad. She can't even put her arms down all the way and she just looks so stiff. It was hard today when she wanted me to hold her at the visit and I didn't even know how to pick her up in that thing! That's was caused the big breakdown today - not being able to feel her when I hold her. I just felt plastic. Where is Maya under all that bracing? Is she still the same little happy baby we once had? How can she be when it seems like we are torturing her everyday! I know we will all get used to this in due time, but I wasn't ready for today for sure. I will just take baby steps on this new one. She did 45 minutes today. Maybe we can do an hour tomorrow.

So Proud

Charlie and I are so proud of our Maya. Tonight when we were doing her cough assist machine, she didn't cry at all. AMAZING!!! She was scared still, but she held her head straight for us, didn't squirm around, and clapped with us between reps. The doctors were right. Give it a couple of weeks and they adjust. I hope I'm not writing this too soon and that she really is getting adjusted to it. The beginning was pretty bad. I had to cover it up with a blanket and every time she saw it, she would start crying. We celebrate every time she does it and sing songs to get her through each treatment. She is really coming around.

Dr. Swoboda's follow-up visit

We had Maya's six month check-up with Dr Swoboda in Salt Lake City this week. Charlie, Maya, me and my parents went on the trip. Just 2 nights this time. Maya did very well during the entire visit. After we went over the same questionnaire as last visit, it was time for the EMG-type test. Since Maya is still congested, the team questioned whether we could give her a sedative. Last time she had a medicine called versed and it made her CRAZY when she came off of it. We decided not to take the risk and not sedate her. The doctor tested the shock on me and it was nothing, so I didn't feel so bad doing that to her. They put these stickers on her hand and then zap. The probes stay on her for a while we talked to the doctor. Charlie and I were busy entertaining Maya with Barney DVDs and blowing a million bubbles. It worked! She didn't fuss hardly at all. Such a sweetie. The results, unfortunately, were not great. Maya's numbers have gone down since the last visit. It is upsetting considering how much stronger she appears to be. Dr Swoboda said it was typical for her age to show signs of strength, indicating it could be more behavior-related than anything else. She says try 6 more months of the medicine and we can get a good indication whether it is working or not. In our hearts, we know the medicine is working. Maya's therapists think it, too. We have heard such wonderful things in the past couple of months about how great Maya looks. We kind of question the results.

As for the rest of the visit, we opted out of doing any bloodwork this time since it is used for their research purposes. Her nutrition results were not surprising - she isn't eating enough. Luckily for us the doctors understand and see this all the time with kids her age so they didn't scold us or anything like that. Bottom line, we are feeding her the right foods. She just needs more of it and also needs a multivitamin. We used the cough assist machine and suction machine in front of Abby, the wonderful nurse, and Maya didn't cry as much. Abby reassured me that I did a good job and to keep it up - and to get the cough assist to 2 times per day. The team was happy to hear about Maya getting her recommended 2 hours of stander time. Her physical therapy visit went pretty well, too. Maya is reaching for toys and using her head less to balance herself. She is able to roll from her stomach to her back. We discussed Maya's knee/hamstring being tight on her right side. They said it wasn't too late yet and we could still save her leg from getting a contracture (permanently) by stretching her constantly. Maya will need bracing while she sleeps so that her legs are straight. If you haven't seen Maya sleep, she sleeps in a frog-legged position. This position is not good for a long period of time and since she doesn't stand much, she doesn't get her leg straight enough. Over time, this can get stuck and she won't be able to stand straight at all. Definitely important to stretch her! So overall, this was a good visit. We don't trust the numbers on the EMG test, and are convinced the meds are working. We go back in March/April.

We did have some fun on this trip and took Maya to the zoo. We thought she would be interested in the animals at this age, but she still didn't care much for it. Here is a pic.

We're moving!

We found a house! Didn't know we were looking? Well, we weren't really. We figured we would start the search and look for a neighborhood that we liked. Before you know it, we are putting on offer on a house and we close next month. Crazy! We did not plan at all about putting our house on the market. My stress level is a little high as you can image. Between Maya's therapy, her doctor's appointments, and all the traveling we've been doing, when on earth will we have time to move!! Its football season, too, so we have to work around the Aggies :) We are taking offers on babysitters mid-October so I can pack up some boxes.

About the house...it is in Spring, about 5 minutes from where we are now. It is in Senterra Lakes, the same subdivision as Shawn and Amy. They are all so excited, especially Hailey! Hailey and Maya will go to the same elementary school (in 4 years). We were within a 5 mile radius from Charlie's family. Now we are within 2. Can you guess which family is a little more excited than the other? To set the record straight, we did set up our searches for Sugar Land homes too. This one just had all the things we've wanted. Its 2-story, with 2 bedrooms downstairs. Maya's bedroom will be downstairs. There is a study downstairs, which we will make her playroom. Now we get to keep our dining room furniture in the dining room instead of storage! There are 3 bedrooms and a gameroom upstairs. One bedroom will be converted to a study/home office (which is great since I work from home once a week), another bedroom will be a guest bedroom (the bathroom has a TV in it!) and the 3rd bedroom for future child (we hope!). There is a HUGE pool and spa in the backyard. Our oversized lot sits next to two lakes. There are ducks and everything! The seller (the wife) is a designer and has faux painted half the house. All the curtains and drapes stay in the house! They have alot of freestanding storage closets all throughout the house they are leaving as well. It was a great value and a very pretty home. I was pretty nervous at first considering we hadn't really looked for long, but I think I am over it now. The fact that we can live downstairs and not have to even go upstairs on a daily basis takes care of all our worries about having a 2-story. Maya will want to go up and down just for fun, but hey, I need the exercise! We put our house on the market Friday. Just crossing our fingers that we get good offers!

Pulmonary visit

Maya had her 6 month follow up with her pulmonologist today. We saw a new doctor this time, Dr Farber. He was pretty good actually and spent a lot of time with us. Since Maya was sick still with the cough, he went ahead and ordered a chest xray to rule out pneumonia and a blood gas test. Both came out fine.  We talked alot about her equipment and he made me feel better about everything. He basically said that if we need to suction her that badly that we should take her to the hospital (i.e. don't try so hard on our own to get her gunk out). He wants to see us back in a month and asked us to bring in the cough assist machine. He also ordered a swallow study to make sure Maya is eating is going okay and no risk of aspiration. Although this appointment went well, Charlie and I are still considering going to one of the SMA pulmonologists. There is one in New Jersey and one in Wisconsin. That may have to wait til next year.

Hawaii

Maya and I joined my parents to Kauai for a week while Charlie had to stay at home and work. Maya did pretty good on the 8-hour flight. She even slept in the tiny bassinet on the plane! The morning we left Houston, Maya's cough sounded pretty bad so at the last minute I decided to take all of her respiratory equipment with me. We took her cough assist, suction and nebulizer. She has had this cough/cold for over 2 weeks now. I still didn't have a pulse ox (to test her oxygen level) and that made me very anxious. When we got to Hawaii we made a trip to the doctor and they said Maya sounded okay. Her oxygen level was okay, too. They were super nice here and had previously dealt with 1 other SMA family who lives on Kauai. We used Maya's cough assist machine, her suction, and her nebulizer just about everyday while on this trip. She HATES it, but what a great thing that I FINALLY used the equipment!

Okay, so now back to the trip. We stayed in Poipu on the south side of Kauai. We had this big condo right across the beach. Kauai has so many beautiful beaches. We drove the entire island and scoped out all the beaches. Maya loves jumping the waves, but the currents were pretty strong so we couldn't stay standing with her for long. I convinced her to play in the sand. Yes, I had to convince her. Lil miss priss doesn't like getting dirty. I showed her how much fun it was to put sand on Mommy. She caved in. From then on, all she wanted to do was play in the sand. She could care less about about being in the water! Here are a few pics of Maya on the beach and with her grandparents.

Other than Maya being sick and fighting all her meals, we had a nice and relaxing week. It was nice to wake up late and not have any appointments to go to. We didn't do any excursions on Kauai, but that's okay because I really enjoyed the time with Maya and my folks.

Playing with food

Maya has been doing this for a while now, but I am just now getting around to writing about it. I thought she would grow out of it. So, we start eating per usual and then about half way through the meal, she insists on having a toy to play with. It must be a toy that comes with a lid. Let’s take today’s breakfast for example. She ate a few pieces of toast and then wanted her empty medicine bottle. This is her process: take cap off, look into bottle, pick up piece of toast, drop it in the bottle, say “uh oh” or "wow!", look at mommy, put the lid on, shake the bottle around, take lid off, eat toast inside. Repeat. Can we say spoiled?

Wheelchair fitting

Maya had her wheelchair fitting today during her PT appointment. We are going with the TiLite chair and not the Panthera wheelchair (see here) we had been looking into for so long. The rep we work with doesn't want us to order the Panthera because no reps in Houston service that wheelchair. But it's the lightest one around - only 8 lbs!! He would us rather go with a company who has reps here in Houston for minor repairs, etc. The therapist wants to do what the rep wants to do and the doctor won't write a prescription for a WC unless the therapist is involved so here we are. This one should be around 16-18 pounds depending on the bells and whistles. I hope I picked the right color for her! The wheels will be a bit smaller than the pic and we will have a push handle. We should have it by Thanksgiving or early December.

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!