Time for an overall update. Health-wise Teryn has been doing very well. Other than a respiratory infection at the beginning of December she has done well. Thankfully that did not require any hospitalization. We were able to treat it at home with antibiotics and breathing treatments.
We have not seen any full on breath holding spells lately. Two nights ago we came close. Teryn got very fussy and I could tell she was headed that way buck thankfully I was able to intervene before she completely passed out.
We have seen very few apnea spells lately as well. Her monitor alarmed today but it was a connection issue because I was sitting right next to her and could hear her breathing. Her reflux is getting much better. We are rarely using the suction machine now but still keep it very close since we have had emergencies where it has been necessary to use it. A couple weeks ago she spit up and almost aspirated. She was choking and almost passed out. I yelled for James to bring the suction into the bedroom and as soon as we finally turned it on I got a couple seconds usage before the battery died. It was a frightening experience. Teryn was turning blue and unable to catch her breath. Even though the suction machine quit on us the feel of the tip in the back of her throat made her gag enough to clear her airway and begin breathing. We had been having trouble with the suction machine. It would not hold a charge unless it was plugged in. The healthcare company was waiting to get more in. After this episode I called them back and we had a brand new one within a few days. They have been really wonderful to us.
Feeding therapy is still going very slow. We have seen some progress but it is still a challenge for her to try eating by mouth. She is having issues with the way it feels in her mouth. We have to give extremely small amounts and go very slow so she doesn't gag and vomit. In one session she will eat 1/4 to 1/2 teaspoon. Not much, but hey, we are working and it WILL happen.
Teryn is very busy and mobile now. She reaches out for things all the time and will occasionally be able to grab things. She is a roller and scooter. We have to keep our eyes on her all the time. She loves sitting up and even though she still needs assistance she is getting stronger at it everyday. When she is laying down you will see her straining to pull herself up. She wants to sit up on her own so badly. We are so proud of the progress she has made. She may not be doing what your children did at 11 months, but that doesn't make us any less proud of her. In fact, we are even more proud of each and everyone of her accmplishments because she has had to overcome so much more to make them.
Here are a few examples. The other day I saw her rolling on her blanket as I walked into the kitchen. I thought to myself, "I am going to need to move her back." A few seconds later when I walked out of the kitchen I saw her halfway across the floor and dragging her feeding pump with her. Whew, we have got to keep our eyes on this one.
Being a silly girl with her feet propped up.
Taking a nap with Xavier. So sweet.
Here are a couple of recent videos. The first is just to show how amazingly sweet our girl is. On the second video she had been reaching and grabbing for the toys on her seat. As soon as she noticed me with the camera she stopped.
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