Posted (Tina) in All Posts on April-7-2009

I’m in disbelief, but Ella actually went to bed at 11:15pm last night and did not wake up again until 7am. Wow. Two nights in a row of lengthy sleep. I won’t believe that this is her new trick, but man, sleep is good.

Well, the scale finally tipped this morning ever so slightly. Now, we are 10.39 kilos (22.86 pounds). I guess it just took her body a few days to decide that it wanted to get more chunk!

We don’t have any pictures of feeding therapy today. It did not go over well. She was not in a place to tolerate it. It just stinks that feeding is such a challenge…something that is so basic and really should not take this much effort. Most children, with some coaxing and time, will come around to putting things in their mouth. It’s just so hard when a child has to “learn” how to eat. She sees the spoon or food and loses it. She can turn from a beautiful, smiling baby into a monster. When you can hold her arm down and get a taste of food on her lips or mouth in between her moving her head violently from side-to-side, most times she just coughs and retches violently and then the tears come. I can’t blame her too much – – if I violently retched every time, I ‘m not sure that I would like eating either. We have to try and trick her by distracting with videos that she loves, so she doesn’t realize what we are actually doing. Without the extra stimulus, she loses it right away. I guess it just makes me realize how long we are going to have her g-tube for feeding…a very long time.

The feeding session wore her out, so she zonked for a bit and then woke to enjoy physical therapy. She has such a great time with her therapist. So cute to look at the pictures of the two of them interacting.

With feeding therapy and physical therapy each four times per week, we are in the process of trying to see if speech therapy can fit in too. Although she has some hearing loss, they still think we should proceed with speech therapy. Ella barely makes any sound each day and we want to see if there is anything that we can do to help that along. Another mom with a CDH baby shared with me that she was told eating skills had to come before talking would transpire. If that is the case, Ella will not talk for a LONG time…but I am sure whenever she does, we are going to get a mouthful from this princess.

In the meantime, we enjoy the facial and body language to let us know how she is doing each day. And that sweet smile, it melts my heart every day.

1 Corinthians 13:13 (NLT)
Three things will last forever—faith, hope, and love—and the greatest of these is love.