Friday, September 26, 2008

A Week of Change

If you have been reading our posts over the last week or so, you know that Emily has had some changes to the dose in her medications. This caused a chain reaction to some other things in her life.

I will first back tract to her orthotics. We went to the place to pick them up last Monday and all went well. It had been a month since we went to be fitted, so she had grown more than he had anticipated. He purposely made them larger, so there was not a problem, but he had to make some adjustments. We were in and out within a half an hour and Emily just sat there and took it all in. We left with the orthotics on and she did very well until we got home and took them off.

The next day, I put her orthotics on for the first time and I don't know if I did it wrong or she just didn't like the way I did it, but her reaction was completely different. She had a fit! I tried to keep them on her as long as possible, but because of her meltdown, I had compassion and took them off a few minutes later. She had some bruising and lots of red marks on her feet. I felt badly and I know she was in pain. I must have done something wrong?! The rest of the day was very stressful also as she has not been eating as well as she used to, and it causes a little frustration. She is not easy to feed to begin with, but now it is like she is backsliding.

I mentioned in my last post that she has been sleeping through the night again and she has been moved back into our room. This has continued and she is doing well with sleeping through the night.

We met with the speech therapist yesterday and I told her about Emily's struggle with eating. As we went through what has changed in the last few weeks, it occurred to me why! We increased her medications! This has been the reason that she is sleeping through the night so well AND the reason she has not been eating as well. She gets tired more easily. She takes the first few bites with no problem, but after that, she loses interest and just doesn't make the feeding time enjoyable. It has never been easy, but now it is a struggle!

In speaking with the Speech Therapist, she came up with some good ideas that we are implementing. I am trying to feed her at a different time. She is usually fed solid food at 3:30 pm. At this point she has been up since 1:00 and is tired from her exercises and from being up for a few hours. As I mentioned, she starts off well, but then it goes down hill. By the middle I am tapping the chair to wake her up.

Her feeding time is going to change from 3:30 to right when she gets up at 1:00. She usually gets fed at this time, but it is only a tube feeding. She should be wide awake and ready for some food?! We'll see how it goes. The speech therapist also suggested we start to grind up some real food and try that. Last night she had her first "real food" meal of Chicken Pot Pie. Once you put it in the blender, it doesn't really look the same, but it does taste the same! She had a few gags, which is normal for her, but she did very well.

Another thing that we have been changing around is Emily's medication. She would usually get all her seizure medication during the day, but she would wake up very shaky and would startle very easily. I started to put some of her medication in her nightly feeding and this has helped to calm her down.

All in all, things are going well. This is a learning experience for all of us! We are doing our best to make sure that Emily gets all she needs and we are learning something new every day. Our daily routine includes time in her chair and desk, time in her stander, time in her orthotics and time for her exercises. You add the time it takes to feed her and my day is complete!

I have added some pictures below for your viewing enjoyment!

Far away...

A little closer! What a beautiful smile!

"Hi Mom!"

If you look closely, you can see the tear in her eye.

Now you can see where the tear came from!

Countdown to Emily's first Birthday = 14 Days!


Stephanie's Mommy Brain said...

I love those pictures. So sad with that tear!!

Sounds like you are learning to life by the "Number One Parenting Rule" - just when you have it figured out they change on you!

Linda said...

Hi! Emily has the most beautiful smile. I've been looking at all her pictures and she looks like she's doing great. I continue to pray for your whole family often. Thanks for keeping up such a good blog report.

Linda (Joel's Mom)