I gave an update on us, but now I want to fill you in on what is going on with Emily (besides the fact that she is growing and growing, which you already know).
She now has 2 top teeth to join those two lonesome bottom teeth. Woo hoo! After months and months of red swollen gums and days of whining, the teeth finally broke through just the other day. As soon as they are big enough to see in pictures I will post some – right now they are just through the gums and not really easy to see. She may be working on some others too, but it is hard to tell. She really likes to take her time about getting teeth. For those of you keeping score at home - she got 2 bottom teeth at age 1 and now 2 top teeth at 19 months.
She is getting Physical Therapy twice a month, Speech Therapy twice a month, Occupational Therapy once a month and nutrition once a month through First Steps in our home. She also has Occupational Therapy once a week at Children’s Therapy Center. She will hopefully be starting aqua therapy soon at Green Hill Therapy. We have been playing phone tag a bit, but she does have an evaluation there on Tuesday so that is a step in the right direction. She wears AFO’s (Ankle Foot Orthotics) 2 or 3 times a day. She wears an eye patch 3 times a week to help strengthen her lazy eye. She also has hand splints that she wears at night to keep her thumbs out (most of the time her hands are clenched in a fist).
She takes Baclofen 3 times a day for her spasticity (her tight muscles). She takes Keppra 2 times a day for seizures. She takes Miralax once a day to help keep her stools loose and regular. She used to take Prevacid for reflux, but we stopped giving that to her about a month ago. After her g-tube surgery, she had a lot of trouble with gagging and wretching - we assumed it was reflux. We now believe there were some other reasons for the wretching - one being that we were giving her too much formula at one time. Along with her g-tube surgery, she has a nissen fundoplication (the stomach is wrapped around the esophagus to keep things from traveling back up). Because of the nissen, her stomach just cannot hold as much as other kids her size. Clearly that is not holding her back though! Since stopping her Prevacid, we have not noticed any signs of reflux and we are thankful.
I have heard some moms of special needs kids talk about the inchstones they meet. So I am going to steal that terminology – it is much more fitting than milestones. Emily takes baby steps in development (no pun intended) and we want to celebrate everything that she is able to accomplish. She has been doing a few new things lately:
- She is really starting to follow sounds more – if I am in the kitchen and she is in the living room and I talk to her – she is looking in my direction more and more. Also when we turn on some of her newer toys, she looks in the direction of the new noise.
- The other day, she was watching a Baby Einstein DVD and Mike went in the other room for a few minutes. When the DVD ended, she let him know by letting out a really loud AAAH! She doesn’t speak, but she definitely communicates!
- I was playing with her and a little duck the other night. It is a rattle and has feet that she can chew on. I was holding him above her head and bringing it down to her so she could chew on the feet. She reached up and grabbed the duck. That is very new for her - she does not reach out and grab things. She can hold onto toys if we put them on her hand, but it was nice to see her take initiative.
- She has really mastered chewing on her hand (especially her right hand since her movement is better on that side). She used to have to move her head down to get her hand to her mouth, but not anymore. This makes feeding time really interesting. There is nothing more fun than sticking your hand in your mouth and rubbing food all over your face and hair!
Emily is an absolute joy - we feel so blessed to have her in our lives. Last night she just started cracking up laughing out of the blue. Mike had tossed something onto the coffee table and the noise made her laugh. Her laugh is getting more and more hearty and we cannot help but laugh along with her.
As I mentioned already, she takes Miralax every day. Well, every now and then she struggles with constipation (one of the joys of the pour muscle control that comes with CP). We also give her prune juice during the day. The past few days, there has been no, um...movement. I gave her a little extra prune juice yesterday and that did the trick (and then some!). I guess she felt better because after I changed her diaper she was “chatting” away in her chair while playing with one of her toys. I decided to catch her on video so you could see (and hear) her in action. (I actually took 2 videos, but one is too big to fit in this post. I will try to post it by itself later & see if that works.) The one below does show some of her "talking" and in the middle there is a smile that will melt your heart. Enjoy!