Well Irelyn had a big day yesterday. First she had another hip u/s to check the stability of her hips. We saw the Ortho and got good news!! She doesn't have to wear the harness that keeps her legs in the frogger position anymore! We are thrilled beyond belief about that! Now she can stretch her little legs anytime she wants too! She wore the Pavlik harness for 12 weeks for sublexed hips. Luckily they were never displaced though. The sacrifice paid off in the end and the dr said her hips look beautiful. GOD is good!
She then her swallow study which we have been waiting to have forever it feels like. Unfortunately that didn't go as we had hoped. It turns out the consistency she has been getting at OT weekly, she had penetrations and aspiration with yesterday. We were sad. They thickened it more, and she still had some difficulty but not as much. Due to these findings they will not allow us to bottle feed Irelyn at home as it is not safe for her. She will continue to get a bottle once a week at OT where they have her on a monitor, however the amount she is allowed to take in will be decreased, also to keep her safe.
I know we have to do this so she doesn't end up in the hospital, but saying I am happy with the results would be a lie. I am so sad for her. It is so unfair. She wants to take a bottle so badly and I can't let her. My biggest fear is that she will never learn to eat by mouth. That has always been my fear. However it is more pronounced now as I thought we would be able to start feeding her with thickened liquids at home by now. The longer she goes without being able to eat regularly, the harder it will be to teach her how to do it. So, today has been a bittersweet day for me. I am thrilled about the hips, but disappointed and depressed about the feedings.
On a happier note Irelyn is such a blessing! She has been cooing for over a month now and smiles constantly! She is more awake now then before. She stayed up for about 6 hours straight last night!!! WOW after the busy day she had and for her having decreased energy, that is incredible for her to do that at only 4 1/2 months old. She has brought such joy to our family and we can't wait to see what tomorrow brings.
