Today has been a very long, exhausting, painful, but overall good day. To start with, I had a feeling I needed to show up to my neurology appointment early. Well my appointment was scheduled at 9:15 and we arrive at 8:30. This turned out 6o be a good thing for me because the 1st appointment was a no show. This allowed me to be seen earlier. The dr is glad that the added meds for my migraines are helping, and upped the dose one more time to see if it helps more with my migraines and some of my other pain issues.
As soon as the appointment was over I checked out and prepared to leave, and suddenly the entire hospital lost power. So glad we arrived early, because the power outage happened as I would have been checking in for my appointment if I had been on time.
Next, we left that hospital to head to the next hospital for my joint injections in my hips. This time in my main hip joints not the SI joints. On our way to this appointment we dropped by the post office to drop a Mini Buddy Bunny in the mail. Dropped by a nursing home to visit the mother of the couple driving Ellie and to our appointments today, this brought a huge smile to her. Then we went to the injection appointment. This injection was very painful. I am so hoping this series helps…
As soon as this was finished we loaded up once more and were on our way to John Hopkins for Ellie’s follow up appointment after her surgery. We talked with Dr S about the lacking weight gain since surgery, she was 40.9 lbs today... Talked about Ellie and how she is struggling to tolerate food varieties, is tolerating pudding thick purred apples and pears and some foods off and on. Today she was venting undigested and curdled formula again.
We discussed her starting to introduce more textures to her and slowly working her down from honey thick to nectar thick purees and introducing honey thick liquids, then working down to nectar tick over the next month. We also talked about mito and metabolic testing with a genetic specialist. While this is never a series of tests or a diagnosis a parent ever wants a child to have, this sometimes a necessary one. If this comes back positive, this will move her from idiopathic to a known route of treatment. Yes this will add more specialists to her comprehensive team, but this team will help us understand better why her body does what it does and what to do for specific treatments she needs or will need in the future.
John Hopkins Children’s Center is also excited to have our Mini Buddy toys in their facility. They are also excited that we are now working with our local AMT rep to help expand our program.
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