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.