Allie's Geneticist wants to see her again in a year and they also have another metabolic Geneticist that would like to see Allie. They have some possible additional testing they would like to do but it's nothing urgent so they will plan to do it next April.
It's been a while since I have updated Allie's site. Seems as if life is just going bye too fast and there isn't time to fit everything in. Allie's health is continuing to be good. She is still struggling with her weight - still weighing in at 26.6 pounds. She is eating maybe half of her food by mouth but it's sporadic of course. Some days she does really well and other days she won't eat anything. She's getting into a habit recently to just ask for tube feedings because she says she doesn't like the food. She will take one bite of something then say she doesn't like it. It's frustrating but we are just continuing to be thankful we have her feeding tube to keep her healthy.
No upcoming doctors appointment for Allie in the near future. We are letting Allie enjoy her summer and trying to keep her away from the doctors as much as possible. She is enjoying camping, our cottage, swimming and playing with her friends. With the hot weather lately, Allie much prefers to be inside in the air conditioning. Allie doesn't handle the hot and cold weather real good.
Overall, everything is going well. Allie continues to be my spunky little girl.
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| Allie graduated from 3 year old Preschool. My little princesses! |
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| Here is our new puppy Cosmo. She is a 10 week old yellow lab. She fits into our family circus perfect!!!! |
Glad to know she is doing well :)
ReplyDeleteFound your blog this morning- our Abby had normal genetic blood work as well- but through the muscle biopsy found a mitochondrial depletion. Interesting enough, Abby has an extreme corn allergy among other allergies. We thought we had eliminated all the corn, but found out it is hidden in everything from wax paper to plastic disposable water bottles- even vanilla extracts are contaminated. Been a long 6 months, but we are seeing improvement after hunting it down and removing. Hope you find answers soon.
ReplyDeleteHappy to know your daughter is doing well. My 3 year old has exactly the same problem all test normal she still weighs 24 pounds. Had peg tube and fights cuz shedon't even want the tube feeding. Very stressful so I completely understand what you're going through. Good bless.
ReplyDeleteSo again my little Neveah wont eat anything she has a peg tube. My daughter has had almost all of the same testing you're daughter had and all were normal. If you can help in anyway with info on test etc please email me and I will do the same for you. Thank you in advance.
ReplyDeleteSort forgot to leave my email.. Fairystarz31@gmail.com
ReplyDeleteHi there. I came across your site because I searched for 10 week old Lab puppys. I read about Allie and it touched me. My little girl has to be tube fed but it sure makes giving her her nasty tasting medicine much easier. My thoughts and prayers are with you guys. Captain Howard
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ReplyDeleteThank you for sharing such wonderful story!In my opinion, Keep a healthy life by consuming healthy food and doing exercise regularly is the best healthy formula.
regards,
Nurse and Medical Careers