Mommy and Maya day

I took Maya to see Dr Bhakta again today for a follow-up. Her lungs sound good. She really hasn't been that bad today. Every now and again she coughs and you can hear the congestion, but all in all she's been in a great mood. Dr Bhakta suggested we get a nebulizer (basically a breathing machine) home with us just in case we ever need it. Our appointment with the pulmonologist with cover this but at least we have the nebulizer now in case she needs it this week. There is a lot of respiratory equipment we need, but we had been waiting until the visit next Friday.

Maya and I went to the mall today. It has been SO long since her and I have done anything fun like that together on my Mondays and Fridays off. I was feeling pretty down about it actually because it seems that all we do together is therapy and doctor visits! Every now and again we'll go in the backyard or for stroller rides, but today was the first time her and I went to lunch together in a long time! It was nice to spend time with her like that away from all this SMA stuff.

Update on Maya medical, etc

Here is an update Charlie sent to a family member that I thought I would pass on. Some of it will probably be a repeat of what we have already posted, but its a good summary anyway.

We are going to see a SMA specialist in Salt Lake City . I guess since it is a genetic disease that it makes sense that the specialist is there. We will be there 3/11-3/14. We fly in on the 11th, have appts on 12&13th, then leave on the 14th. My mom & her dad are planning to come with us. We want to talk to someone who knows all about SMA to make sure we are doing the right things for Maya (i.e. medications, therapy, equipment, nutrition). We get differing opinions here in Houston (& in contacts with other SMA families). Here even in Houston it hard to find doctors/therapists with experience with this disease & that has been the biggest issue. They have set us up with MDA (Muscular Dystrophy Assoc), but the waiting list is long & we haven't had much luck with people calling us back.

We have been working to get her team of doctors, medical equipment and physical therapy. Those 3 things take a considerable amount of time, especially since it seems no doctor/nurse is ever in any kind of hurry. We set out to get things done in a week or two to quickly find out that it takes much longer than that. I guess I will give you a little run down on each of those 3:

Doctors - We have seen a Physical Medicine & Rehabilitation doctor who is suppose to oversee all her different therapies & help with equipment. The problem was she has not seen a SMA patient, so we got a few prescriptions from her & she told us we should probably try to see the MDA's PM&R doctor next time. We have an appointment with a Pulmonologist this week since her lungs are something that we have to be concerned about. Hopefully, she will be fine is this regard for a long time, but they recommend we go ahead & meet with one. We still need to decide who our neurologist will be. We obviously no longer want to see the guy who told us he was 1000% sure she didn't have SMA a few months ago. There is a MDA neurologist here in town, but another SMA family here in Houston didn't like him & see someone in Ft. Worth. We are keeping our pediatrician & he looked into medications for Maya. He is ok with a particular one (valproic acid), but he is unsure of dosage, etc. That is another issue we hope Dr. Swoboda in SLC helps us with (& probably the biggest issue). There is not one drug out there that everyone is using or one that has shown to help everyone.

Equipment - We need to get her a stander as soon as we can. This will help her in her bone development, posture, joints, etc. We are just not sure which one to buy. We are waiting on a particular model to get to trial it, but this is one of those items that has taken way longer than expected. We have to trial it for insurance to pay & getting ahold of one has been a problem. She has used some in therapy, but we would like to get one with wheels so she can move around or we move her around. We have borrowed a stander from our physical therapist for a couple of weekends & she has been so good with it. She doesn't complain when she is in it & even this weekend she was pointing to get in it! She went almost 50 minutes in it yesterday & that is definitely a great thing since it is so important for her. Unfortunately, the stander we are borrowing is not the one we want to buy. Hopefully, we will hear something this week on the one we want. We need to get a wheelchair before too long. I don't think it is a huge concern right away since we can still carry her around or use the stroller right now. Then, we have to worry about getting the car/house modified at some point. We may also get a new kind of stroller that is better for her posture & gives her more support that just the run of the mill stroller we have now. Finally, they are worried about the "floppiness" of her legs & the fact that they won't really stay together (like you would need to to stand). So, got some "shorts" that go around her thighs to keep her legs together. They look a lot like biker shorts & we have put them on her when she sleeps & as of now is sleeping just fine in them.

Therapy - She goes to physical therapy twice a week & has an occupational therapist from the state come to my mom's once a week. They work with her for an hour on maintaining as much strength as possible in the arms, trunk & legs. She is still sitting very well & has good control of her neck & those are things that again we hope last a very long time. They use the stander & other equipment. She will start aquatic therapy in April (first date it is offered) & we are excited about that. We have heard from others how that is helpful & allows them to do things that can't do otherwise. She will only have the physical therapy once a week once that starts. The PM&R doctor asked us when does she have fun? That is hard since we only hear about bad things that happen if you don't do physical therapy, use the stander, etc. Then again we don't want her life to be consumed with therapy & doctor's appointments. The PM&R also wanted her to have more social interaction (ie day care). That is another issue with having the daycare use the stander, etc.

Needless to say, there are a million things going on & probably will be that way for the foreseeable future *(& it's tax season to boot). We are hoping to have dinner with a teacher in the Klein school district (same district as Amy) who has SMA, is an Aggie & is in her thirties. She reached out to us & has gotten us in contact with several other families which obviously is very helpful.

Maya is so much fun to be around & everywhere we go everyone comments on how beautiful she is. Mom has even entered her into a "beauty" contest in a couple of weeks in Sugar Land. She is talking constantly (no much for words yet other than un-oh or whoa), her hair is growing & we think her teeth are finally coming in.

So the worry continues

Maya has developed quite a nasty cough the last couple of days. Mild fever mid last week and just a little fussiness, but nothing too crazy. I honestly just thought she was teething (we can see her teeth in her gums but they have not dropped yet). Anyway, so I didn't think much of taking her to the doctor for her congestion. They always say the same thing anyway. Well, today, Gayla offered to take her and I am glad she did. Maya has bronchitis. We don't know if it is viral or bacterial, so the pediatrician gave her antibiotics given her condition. If it is viral, we need to watch out because it could get worse. They took her oxygen level reading and luckily her oxygen was at 100%. Usually they don't need to see patients again after the antibiotics, but the doctor wants to see her back in 2 days. I was already stressed out on Monday night when I saw her gagging on her food. Then I heard her congestion that night, too. I told Charlie that it was too soon for her to be having thse problems. It isn't fair. On top of all this, she is so stopped up that we now give her Miralax. We tried the natural stuff for long enough - now we need to help this poor little girl.

She's been sleeping with us so I can keep an eye on her. Its so scary to think I may not catch everything. I hope I do. She is such a sweet little girl and we love her sleeping with us! She is such a little mover though. By the morning, I am on the edge and we have a king bed!! I do hope she gets better quickly. I don't want this to be a sign of tougher times ahead.

FINALLY....A tooth!!!

FINALLY!!!! We see a tooth! It is one of the bottom two (that you are supposed to get first). It only took about 14 months, but finally the day is here. It is SO cute. Okay, so everything about her is cute! I see a tiny line of white. Her gums don't seem sore yet and she isn't fussing, so it took me a few tries of sticking my finger in her mouth to confirm. We knew it was close because we can see them in her gums, but just didn't know when they would drop! Exciting stuff.

First day at TCH Woodlands therapy

Maya LOVED her new physical therapist. I mean I thought she would cry for sure. Nope, she liked Deb so much that when the session was over, she didn't even want to come to me! We tried another stander today - it was blue - Tristand maybe?? Maya wasn't a huge fan of it, but it did lay flat so it was easy to put her in it. Jana, the main lady there, was showing me a few wheelchairs too. They didn't have any for Maya to try since she is so little, but they said they were working on it. They gave me a few brochures to look at on the wheelchairs. Oh, by the way, Charlie and I decided that a manual wheelchair is best for her right now. A power wheelchair will likely be necessary later so we might as well as get Maya manually moving herself around as long as she can!

Happy Valentine's Day!!

Maya and I are spending the weekend with Nani and Grandpa while Charlie goes hunting with Uncle Shawn and "Uncle" Tony. Maya was a little fussy today even with Nani, but her tummy as been bothering her so just makes sense. Maya enjoyed playing with Angel tonight as she always loves animals! Maya gave out lots of kisses tonight. Her daddy sure did miss out!

Yesterday we got Maya in at TCH's physical therapy center. Her 1st visit is Monday and she will be there every Monday from now on. They can't fit us in for the second day at this time, so we will continue MedCare on Fridays. Now I need to come up with an excuse as to why we are not going to them on Mondays - yikes! I spoke to Kimberly from ECI and she may have found another trial stander we can use. She will call next week with specifics. We scheduled a visit with the genetics counselor for the 24th. We also got Maya scheduled to see the Pulmonologist on the 27th. Busy, busy...

For Valentines, we went to a local mexican restaurant and watched Maya play with her straw. She is hysterical! I managed to get a video of it and its on our photo website. She is a hoot!! We missed being with daddy though. Happy V-Day, Daddy :)

Another reason we visited Sugar Land this weekend was for Maya to have massages. There is a local Indian grandma that swears by massage and the theraputic benefits it brings. I believe it because she massaged this little boy into standing and walking. I don't believe she can work miracles and make Maya walk, but I do believe that with time Maya can possibly stand. Even if it prolongs how long she can sit and play, feed herself, etc, we will take what we can get. Maya was NOT a big fan of the massage and cried the entire time. Its not that it hurt her or anything like that, but this woman who she's never met was all over her and she was just plain scared. I know she cries, but in the end I also know how important this is for her body and I just have to sit through the crying. It is hard, but I have to do it. This isn't the first or the last of hard times.

Finally! A lazy weekend!

Charlie, Maya, and I FINALLY got to enjoy a lazy weekend. We got to cuddle with Maya in bed, take naps with her and just hang out at the house. We almost NEVER get to do that on the weekends. The highlight of the weekend was when Daddy put Maya's playset together in the backyard. Maya just loves the slide and swing. She can't slide down by herself so Charlie and I would take turns scooting her down. She giggled over and over. She pointed to the swing and away we went. After a few pushes, she was pointing back at the slide. This is a fun game. Oh well, we are just so happy to see how happy she was sliding and swinging. She so deserves this moment! And thanks, Daddy, for putting it together. Maya Bean really loves it!


Maya has decided that the only way she will eat is with her Rocking Horse snowglobe playing music. Its not enough that we put it on her highchair to touch and feel, she actually demands that we put on the music for her before she will allow the spoon to her mouth! She just points and says "this". What a toot - but we have to admit, its so cute!


Saturday night, my mom and I attended the Ms Wheelchair Texas pageant at the Galleria. Angela, our new SMA friend, is the president of the organization and put on this whole thing. There was a contestant who has SMA but she must be Type 3 because she was in a scooter. not a wheelchair, and her upper body seemed fully functional. It was an enlightening experience to hear the stories of all these women. There were 2 Indian women in the contest as well. Both were left paralyzed. One of them is a doctor! The woman that won was born without any arms or legs. Her story is amazing and she really gets around well. Well deserved award. That evening, we sat with Amy and her daughter, Sydney. I have to say it was hard to see Sydney. Even though Syd is a weaker Type 2, it was hard to envision Maya in this position at 6 years old. She couldn't hold her drink or her fork. I didn't know how to help. I felt worthless sitting next to her. It made me realize that I had no idea how to act around people in wheelchairs - how do I help them without offending them?? I know it will come with time, but I was actually pretty stressed about the whole thing. Sydney is such a beautiful little girl though. She was Little Miss Tx Wheelchair last year and had to pass her title to a new little girl tonight. She was upset that she had to give it up but still a good sport. I am glad to have met both of them. They are a really nice family.

On Sunday Charlie and I let Maya spend the evening with her Grandma and Papaw while we went out for early Valentines. Charlie and I just hit up PF Changs which we've been trying to go to for like 2 weeks. We went and saw Slumdog Millionaire afterwards. Pretty good movie actually. Its no wonder it was nominated for so many Oscars!