Baby Avery

http://averycan.blogspot.com/

For the past couple of weeks, I have been preoccupied with this sweet little baby’s blog and her parent’s bucket list for her. Avery was diagnosed with SMA Type 1 and they are a fellow Houston family. Unfortunately Avery passed away at 5 ½ months and only a short 3 weeks after her diagnosis. But in her short life she was able to share her story with millions of people and has created a wave of unprecedented awareness for SMA.

Her dad, Mike, and I had just exchanged messages and wanted to let the girls meet up soon. I’m sad that we could not meet Avery and I’m sad that her life was taken so soon, sooner than even the doctors had given her. We are very thankful for this family and the amount of attention they were able to bring to SMA. I really hope that with all the attention something good can come out of it, for the cure/treatment of those living with SMA and for the prevention of SMA in future children.

UPDATE: So far, Avery’s Bucket List was able to raise over $300,000 (with those funds being matched by an unnamed donor). Also, Delaware state representatives have signed a bill to promote more awareness of SMA in their state for carrier testing and newborn screening. If only all the other states would follow! 

The view from my office

It’s been a very long 10 weeks, long hours and not much sleep, but I cannot complain. I love the new job and being able to work these hours while still being around the kids. Mostly I have been upstairs working in our study, but I come down to make lunch, then dinner, then tuck the kids in for bed. And then there are all the appointments during the week and at the house for Maya. But I couldn’t do it without our great support system! Gayla has been taking Maya to therapy twice a week so that I only have to go once a week. And we have a babysitter during the day and in the evenings to watch the kids. Charlie has even gone grocery shopping all tax season (woohoo)! I can’t say enough about how neat it is to be able to work at home and still keep up with all the things the kids are doing, Maya’s health and nutrition! The summer will be so much fun and I will be home to swim with the kids – finally! This was the view from my “office” for the last week of tax season (the focus being on the kids, not the babysitter guys)! 

The Food Swiper!

This is same scene every night when Charlie comes home from work and eats his dinner (which is always way after we have eaten!). Before he learned to climb on the couch, he used to just do a drive-by and grab green beans, bread, whatever he could get his hands on. Now he climbs up on the couch and on Charlie’s back and tries to reach over Charlie to get to his plate! And so every night Charlie asks me whether I fed his boy that night! I can’t help that he’s hungry all the time! Kaden likes to take Maya’s food too, but I never usually have time for a picture since I’m too busy running after him to get it out of his hands. Kaden takes 5 minutes to eat and Maya takes about 30 min so she doesn’t stand a chance most days. His favorite swipe is usually cheese, which is also Maya’s favorite snack. Swiper no swiping! 

Maya finally over her paci!

This past Saturday, Maya was with her Nani and Papa and I heard that Maya all of a sudden decided that she wasn’t going to use it anymore (I’ve heard this before). She threw it in the trash can herself and watched Papa take the trash out. She went to sleep Sat without it and had a nap on Sunday without it. Sunday night, she didn’t ask for it, but said she “needed something” and after getting her everything, she said she still “needed something”. We didn’t give it, laid by her side and she fell asleep. Yeah!

Today is Thursday and she has cried at naptime everyday since Sunday for her paci. Every evening though she has not cried, but asked. Not upset, but does ask.

Update 1 week 4/26: Maya is ALL DONE with her paci. Last Thursday was the last day she asked for it. She joked about it on Sunday when we talked about going on a plane and her taking a nap, but was laughing about it, so I think we are all good! She hasn’t even said she “needed something” since about Saturday! Woohoo!!! It only took 4 years….

So for those who have missed it, one of the reasons we didn’t take it away from her sooner is because some of the therapists (when she was 2) said it was okay for her because she was developing her jaw muscles even during the night which would prevent contractures. SMA kids not only contract in their legs, arms, lungs, but the jaws are affected too and many children have a hard time speaking. We are blessed that Maya does not have this issue and I hope she never will. Secondly, her BiPap isn’t easy to get used to. You have to keep your mouth closed when the mask and machine are on. Otherwise, you start breathing over the machine and it makes you light headed and dizzy (yes, I tried it myself). So, that was another reason we didn’t get rid of ole paci. Unfortunately, getting her on BiPap is still bust. Now my biggest fear is that she will keep her mouth open when she tries using it and then will hate it even more.

Fill the Boot Day and Channel 2 news

Today was one of 3 Fill the Boot days for the Houston Fire Department’s fundraiser for the MDA. As you may recall Maya is on the sticker this year that the firefighters hand out to people when they fill their boots with donations.

We started the day by getting up super early to be at the Channel 2 news studio by 7:30 am. Maya was on TV, didn’t have to say anything this time, promoting the event.

After the tough job of smiling on camera, we headed to our local fire department to visit an actual Fill the Boot event. We are so happy we went. I spoke to one firefighter who said he’d been doing this fundraiser for over 20 years and this was the first time he had met one of the children he was doing this for! Brought tears to my eyes. They were very moved by Maya and asked so many questions about SMA. Maya helped the firefighters out by offering her own donation J

Family pictures! My favorite session so far!

Loved all of them! 

Here is a link to all the pics: http://thepringles.smugmug.com/Family/Family-Pics-2012/23253344_pT9mk4#!i=1875508642&k=sCZrpSx

The pictures up until the blue bench are all behind our house near the lake. Then we drove to a pretty park in the Woodlands. Kaden was all over the place, but we managed to get a family picture, one by himself, and one with Maya so we are good. Maya on the other hand had a great shoot and I love just about every one of her pictures. Charlie and Maya take the cake on this session. They look so cute with the bluebonnets :-)

Kaden’s first haircut

We took Kaden back to the same place that we took Maya. Maya’s first cut was planned a little bit, but Kaden’s was completely spur of the moment. I had been wanting to get it cut for a long time since it was getting to look a little rugged. We were at dinner at Rudy’s and I just said, well, we ‘re all here and it’s just across the street so why not! He did so great! Sat in the fun chair and watched the TV. He didn’t start fussing until the end when they used the clippers. Even then he never cried. Much different than three years ago when we had Maya’s haircut (and much drama). 

Update: His second haircut just a about 4 weeks later below. Can't get used to how fast boys need to get their hair cut! Charlie is going to need to learn how to use those clippers again!

LA Trip for Ankit’s wedding

Take two on Indian weddings. Maya loved the last family wedding in NY last May. She shut down the dance floor (anyone noticing a trend here?) at the last wedding for my cousin Mona. I was going to go alone to this one and make it a little getaway for myself but how could I knowing Maya would be sad about not being able to dress up and dance with her family! So her and I went to LA with Nani and Papa to celebrate my cousin Ankit’s wedding. She had so much fun and so did I! My brother came solo and he and I were able to catch up (without a million kids) and we hadn’t been able to do that since before I got married. We also hooked up with my childhood best friend, Ragini, who lives in LA and she came to the wedding as my +1! Maya was not able to shut down the dance floor this trip but she sure did try. We finally had to convince her to go to bed at 10:30!

Maya had a great time with her grandparents and the other kids. I had a nice little getaway myself and even got to hit the gym, the Jacuzzi, and stay out late with no worries J. Thanks to Charlie to staying at home with Kaden so we could go and have a relaxing time!

p.s. I started reading Hunger Games on the flight to LA. It was SO good that I finished it by the time we got on the plane back to Houston. Amazing for me considering I haven’t read a book in like 3 years and had a family wedding with a million events to attend. It was so bad that one day I stayed in the hotel and skipped events just to read. Wow. But it was also naptime for Maya so great excuse – right? Then when we got home (at midnight) I stayed up and started book 2 and finished that in a week. Also amazing considering I was working 50 hours a week. What a great series!! I was a tad bit disappointed in the movie and heard Book 3 was a little disappointing so haven’t had the urge to start that yet.

See all the pictures here.

My Tattoo lasted for a week!