Maya Updates - Jul 2010

Maya updates:
On the medical front, we have ordered her power wheelchair, starting looking at wheelchair lifts for the car, we have NOT started looking for new cars though so that kind of takes precedent over getting a lift. We've looked into getting ramps for the house, a bath lift to save our backs, and Maya a mattress that will fit her needs for her transition to a big girl bed!

Just look how she has grown in one year. She has grown so tall and that hair is getting so long.

Maya is talking so much now. Her sentences are getting better and better every week and we are just amazed about some of the phrases she is picking up. We do still get mumbling, but she is trying hard to get the words together. She has always loved music and us singing to her, but now she is picking up on the words to the songs even better. She knows all of Jesus Loves Me, Happy Birthday, and Rain, Rain, Go Away. Lately, her favorite songs are the three mentioned, Big Girls Don’t Cry, Rock a Bye Baby, ABC song, and Hush Little Baby. She changes her top song almost weekly and when we do her cough assist she tells us which song will help get her through the treatments.
She let’s me know loud and clear when she wants something to eat. One time, she left her playroom, wheeled into the kitchen and stopped at the stove where I was cooking dinner, looked up at me and said “Mommy, FOOODD”. I guess she was telling me to hurry!

Maya is definitely ready for potty training. Yvonne does a little with her here and there and my mom has been taking her too. Honestly it’s been a struggle for me because holding her on the potty is a bit exhausting for me. BUT, she wakes up dry most mornings and after naps and shows interest on going to the toilet. Now, me and Charlie just need to get on board and make it happen. Maya if I just take off work for a whole week and keep us in the house as much as possible we could get something started.

Her pallete of foods is starting to increase. Maya still very much dislikes any type of fruit (any type), cake, ice cream. Pretty much anything sweet. She does like banana bread though, so I have recently added that to the baking list. She will eat an animal cracker now and again and maybe some Teddy Grams, but honestly, it isn’t much on the sweets. Which is great, right? Why am I complaining? I’m not, except the fruit part. So in an effort to lessen the amount of V8 fusion and orange juice she gets in the morning (we only give her 8 oz a day as it is), we borrowed my mom’s juicer. We tried mango and peaches. That was a no. But the other day, tried apples and peaches and she was drinking away. Now if I can get myself to make her fresh juice a few times a week, she will get all those fruit servings in without the sugar from the juices! Cheese is still the big priority food for Maya. Anything with cheese on it suits her. We have grown a little from the enchiladas and quesadillas. She is starting to eat more of what I make for dinner. One week she ate the cheese and jalepeno stuffed chicken with black beans and Spanish rice, the next day she ate two tacos with ground beef, beans, lettuce, tomatoes and cheese, and the next day she ate my chicken alfredo and yellow squash. AMAZING! I think eating at the table as a family really helps. She still loves soups, grilled cheese sandwiches, eggs every morning, peanuts, almonds, goldfish, spinach, most Indian foods, and rotisserie chicken. It has been fun trying new things lately. A lot of work, but if she will eat it, I will make it! This week

• She is like the sweetest little kid I think I’ve ever met. Okay, maybe I’m a little biased, but really. She says thank you to you all the time. Says bless you anytime you sneeze, if I look like I’m hurt (pregnancy issues), she always asks if I’m okay, gives out hugs and kisses to no end and says love you to us even without us saying it first sometimes. Recently when we have been eating dinner at the house, she thanked me for making her pizza and then for her sprite (which was a special occasion type of a drink), she thanked me for washing her hands and mouth after the meal. I really think she said thank you more than anything else!
• Affection – As I mentioned with the hugs and kisses, Maya is a very affectionate person. She adores my belly right now and tells me to come over to her so she can kiss her baby brother. Then she lays her head on my stomach and pats it and says “ooohhhhh baby brother…love you baby brother”. One of the sweetest acts of affection is when she is sleeping with us or we are taking a nap with her. She will wiggle over to you, snuggle up and put her arm around your neck and pat it like she is consoling or putting you to sleep. As much as we like having our own bed, there is nothing in the world that can replace that feeling!
• Every night when we lay her down for bed we say, “would do you say?” and she replies back with “love you” and “morning” for see you in the morning. And a kiss and then lights out. She often asks if we are going to “sleep me” (are you going to come sleep with me?).
• Pacifier progress – about a year ago a few therapists told us that her keeping a pacifier wasn’t a bad thing for her considering she was constantly exercising her jaw muscles (which so many SMA kids lose the function for). So we didn’t fight it and kept it in. Well, now that we have a chatterbox, there is probably no need for it, especially during the day, so we are taking baby steps to saying bye bye. We started with readiing her the “Bye Bye Pacifier” book. For which she thoroughly enjoyed as she held on to her own paci stronger. We started to tell her that she was a big girl and didn’t need it anymore. When we asked her if she wanted to give it to her brother, it was a swift NO. So we tried tying it only to nap and bedtime. It’s a start anyway. She isn’t allowed to leave her crib unless she leaves the paci behind. It took about a week to catch on, but we are now 3 ½ weeks into it. She still asks when we are in the car or when she is tired, but we really do leave it at home now. She cried a lot at first, but its getting better. So, the next time you see her, remember to tell her what a big girl she is for not having a paci.
• Maya’s favorite activities these days when the weather allows it are going to the park and swinging, swimming, blowing bubbles, playing in her house in the backyard, playing with any kind of water, coloring with markers (never crayons), painting and putting stickers on things.
• Her favorite toys are anything Little People (she has the town, the castle, the mini castle, the car, and the house). We got her a Polly Pocket car and just loves her “Barbie” in it. It’s not a Barbie, but she refers to it as so. She likes her Tinkerbell Barbie, she is inseparable from her Sponge Bob and Patrick stuffed animals we got from San Fran. Any kind of dollhouse with little people or little toys and she can be won over.
• Oh the imagination. It is so fun to watch Maya role playing with her toys. She will be playing with her Dora and Boots mini barbies and you will hear her say “Dora, want a cheese sandwich” and then she’ll pick up Dora and say to Boots “yes, please”. Every now and again, I will hear her say to her little people toys, “oh you don’t want get in stander” or “oh you don’t want to do cough cough”. I think she says it just loud enough for her daddy and I to hear.