Monday, May 6, 2013

An appointment with Dr. Longo

We met with Dr. Longo today, he is Italian and has a very strong accent. I struggled to understand him but my husband is a champion at understanding him. Chad also understands medical language so I let him take over. He really knows how to speak to these doctors after all that's what he does for a living. I basically just have Chad translate the whole appointment to me afterwards.
Dr. Longo was happy to see that Leah was a lot more alert from the last time he saw her. He explained in detail Leah's GRIN2A (glutamate receptor gene). He also expressed how very rare it is and that the medical industry just found the gene three years ago. He is anxious to get the results from our blood tests (hopefully they get here soon). He said that he needs to see if we are carriers before he treats Leah. He is going to treat Leah by giving her a certain amino acid. This amino acid opens up the receptor that is not functioning correctly, he hopes this will help Leah. Dr. Longo explained that Leah will always have this condition but he hopes that he can help give her a better life. He said that six months ago he was very scared for Leah, he is no longer scared. Hearing these words from him really helped give us hope.

We are headed back up to PCMC tomorrow morning to have a small surgical procedure done for her  feeding tube. She is going to get a button put in. She will no longer have a tube hanging from her belly. I will show pictures of the button soon.

As many of you know Leah has a terrible stomach. I thought I had gone to the ends of the earth to help this poor girls stomach. But I guess I haven't gone far enough because I just found out about a blended diet for tube fed children. I am reading a book on it and I've been discussing it with Leah's therapist Becca, who is a feeding specialist. Together with a Nutritionist we are slowly switching Leah to a blended diet. This diet is basically blending nutritious foods and syringing it through her tube. Of coarse we will be starting out like she is a six month old baby getting her first foods. I am so excited. I approved it through her doctor and we will be on our way soon. Many families have found that their tube fed children with stomach problem have done so well on this diet. Their constipation, reflex and vomiting go away. The thick mucous that these children get goes away and great color comes back in their skin. I can't wait to get started!

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