Maya gets her stander and a medical update

Maya got her stander today! It only took 3 months, but we are happy it is finally here. All her cousins were at grandma's house at the time it was delivered, so they were all over her. Madi even said that she wanted one! Bryce, Hailey, Mason and Madi all took turns pushing Maya around the house. Once she gets used to it, hopefully she will start pushing herself around. We are very excited about finally getting the stander because until now she has only been able to use "the Monkey" stander on the weekends. Now she will be able to start using it daily. On the weekends she was really good about getting in it the suggested 2 hours per day, but now that we are going to be using it everyday, I am sure it will take some adjustment getting the 2 hours a day. This one is a 2-person job. I can't put her in it myself (since it doesn't tilt like the other one did), so we will have to put her in it first thing before Charlie leaves for work and first thing when he gets back. Or when she is at grandma's house during the week, we will have to allocate extra drop-off time to help get her in it. I know she will get the hang of pushing herself around. Its just a matter of time.

Medical Update: This is a good time I think to provide a medical update on Maya.

Meds: She has been on the medication for 3 months now. Everyone would agree that we are very happy with the results so far. We have seen no regression (which is what we were praying for) and we have actually seen small strengths. Small is small, like she is lifting her arms and waving them back and forth when she lays down. Before, I saw her raise her arms, but not for long and she definitely wasn't swinging them back and forth. She had lost the ability to pick herself up when she fell frontwards while sitting, but slowly we are seeing her strengthen in this area. She can't sit up by herself, but if I prop her up and give her a little help, she is doing more than half the work to get up. She is leaning further and further out of her base and not lifting her head as much when reaching for things. She is holding on to me with a better grip. I've never had that feeling before so I am really excited about that. She was crying the other day and wanted me to hold her. She actually held on using her hands/fingers and even a leg. It felt so good! What else...in the bath and in the pool, we see her moving her legs alot which is a good sign. Her therapists all agree that they are see improvement. This is remarkable considering the disease so we are keeping our hopes up for better things to come. We are going back to Salt Lake City in September for Maya's 6-month follow up with Dr Swoboda. Then we will find out just how good the meds are.

Equipment: So far we are the proud owners of a:

1) Standing wheelchair, the Rifton Dynamic stander

2) Cough Assist Machine

3) Suction Machine

4) AFOs (her pink braces for ankles and foot support)

5) Nebulizer

We are patiently looking into her ultralight wheelchair (the one in the picture below that weighs 8 lbs, a pulse oximeter, and a brace for her back/chest. In October, Maya will have a sleep study to test her breathing during sleeptime. This will tell us whether Maya will need a BiPap machine to help her breath at night. Please note that the cough assist machine and BiPap machine are preventative measures for Maya. The cough assist machine should be used on her twice a day when she is healthy so that when she is sick and has to use it every two hours, not only is she used to it emotionally, but physically. Same with the BiPap. I don't think we have to use this unless she gets really sick. The thought here is to set her up with everything she needs at home (respiratory equipment) in order to avoid any hospital visits since she could actually get sicker in a hospital.

There are several other items are looking into like: umbrella stroller with special needs support, adaptive toys (she can't push all the buttons on toys so we adapt them to make a switch), a special booster chair for the kitchen, a sitter with tray (so she doesn't slouch) so much when sitting and playing, therapy balls and wedges for the house, and a special swing. We plan on making a playroom out of our dining room and I hope that by the time my sabbatical is over, we have all the equipment and rehabilitation items we need and then we will just need to maintain them based on her current health status.

Therapy: Currently Maya is getting therapy 4 times a week. She has physical therapy (PT) with Texas Children's every Monday afternoon. On Tuesday mornings she was having aquatic therapy (AT) with Tx Children's, but that is over so we are going to start it with Medcare as soon as we can. Wednesdays she gets occupational therapy (OT) with Early Childhood Intervention (ECI). She is off on Thursdays and on Friday mornings she gets PT with Medcare. Just when you think she has enough on her plate, we are looking into a massage therapist and a perhaps speech therapy. This is what it is like having kids in sports perhaps and going to practice everyday.

Assistance: We are looking into getting a nurse's aid about two times a week. We are new to this whole thing, so it should be interesting. It will be nice to have a nurse's aid because then I can leave Maya with a trained medical professional while I am at work or running errands and this person will know how to use her physical equipment (stander/wheelchair) as well as help to administer her respiratory therapy and do her daily stretches. Her diet is also very concerning, so it will be nice to have someone with that "understanding" of what it means for Maya when she doesn't get all her vitamins/nutrients and how this can affect her energy and overall ability to fight the disease.