Yesterday Jordan had her 4th feeding therapy session at Mary Free Bed since her last swallow study. Since she was only scheduled for 4, I knew she was going to be discharged. She was weighed and measured and has gained almost a pound in the past 2 months!! We met with Jenny and chatted for a bit about her visit with Dr. VanDyke last week and how she had been doing for the past few weeks since we had last seen her. Then we watched the swallow study so I could see how she pools thin liquids and the aspiration as well as how the thick liquids with the straw bottle work better.
Since Jordan has a history of aspirating and has made no progress with her swallowing throughout her on and off therapy for the past year, Jenny said we are going to just wait for a year before doing another swallow study. I was kind of surprised that we were waiting that long. I thought maybe 6 months, but a year seemed so long!!
On the way home I felt so helpless. It is so hard to know that something is wrong with your child and there is nothing we can do right now to make it better. I want so badly to give her food and sit and watch her eat like all other children do!! I want to not have to be so concerned about every little thing that falls on the floor or what she can climb up and reach!! I want to celebrate her Birthday with cake and ice cream and watch her make a mess of it all!! I just want my baby girl to have everything that everyone else has!!!!!
It is at times like these that I am thankful to have a wonderful, level-headed husband who can help me put things into perspective. After telling him that they weren't doing another swallow study for a year, his response was "well, that makes sense, since they think it will be a few years before she is really ready to eat." DUH!! I was so excited last week to hear Dr. VanDyke say that he thought that she might be ready to eat at about 5 years old, yet I am disappointed that at 2 1/2, they want to wait a year to move forward with any feeding evaluations. Derrick helped me realize that continuing to perform swallow studies and having her in feeding therapy isn't necessarily going to do anything until she is older and capable of being taught to swallow (something we have known was necessary for her to eat for a while).
I was also able to realize how much I appreciate the therapists at Mary Free Bed who work with Jordan - both Jenny and Ellen, as well as nurse Jane. These 3 people have been there to answer my questions and to encourage me about Jordan. I feel so supported by these women and the thought of not seeing them for a year is difficult for me. I know Jordan is seen frequently by several different doctors, but there is something special about these 3!! I will miss them tremendously over the next year!!!
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