Wednesday, July 29, 2009
Tuesday, July 28, 2009
Happy Birthday Mya!
Today is Mya's first Birthday!!! The last year has flown by!!! I can't even believe my little baby is now 1!!!! The past week has been great for us! She has been eating really well!!! She even had a couple bites of a McDonald's cheeseburger and french fries!!! Can you believe it!!! Mya is also getting so close to walking it's not even funny! She took 7 steps on Sunday! All the doctors thought she would not even be crawling by a year!
We have a long road ahead of us especially when it comes to drinking but I am starting to hopefully see some light at the end of the tunnel!!! God works in mysterious ways I guess! But he did bless us with the most beautiful 1 year old little girl I know!!!!
Happy Birthday Mya!!!
We have a long road ahead of us especially when it comes to drinking but I am starting to hopefully see some light at the end of the tunnel!!! God works in mysterious ways I guess! But he did bless us with the most beautiful 1 year old little girl I know!!!!
Happy Birthday Mya!!!
Wednesday, July 22, 2009
Negative!
Mya's biopsies came back NEGATIVE! YAY! So, that kind of rules out a lot of different diseases! Her over night study did show quite a bit of reflux as to be expected. The GI doctor at this point wants to repeat her emptying scan at Cincinnati and see what that says. He wants to get the allergy testing done and possibly start her on a pureed diet through her feeding tube.
The nurse is to call me back this afternoon to let us know when they can do the emptying scan. Hopefully they can do it when we return on August 19th and 20th so we only have to make one trip!
The nurse is to call me back this afternoon to let us know when they can do the emptying scan. Hopefully they can do it when we return on August 19th and 20th so we only have to make one trip!
Sunday, July 19, 2009
Cincinnati Appointments
Everything went well in Cincinnati this past week! We will get the results of her biopsies and 24 hour study this next week. Visually everything looked good.....so hopefully we get more good news this next week!
It's kind of a hard position to be in....you don't want there to be something wrong with your child or for them to have a disease.....but yet it is still taking us an hour to do her tube feedings! She is still only taking 4 ounces at a time....so sometimes I think how can't there be something wrong!
We have tried several times to increase the volume, calorie content, or decrease the amount of time and each attempt is not worth all the vomiting. Overall she is doing better, so we have to focus on the positive. She is still sucking milk up a straw and eating table foods.
The GI doctor at Cincinnati mentioned her low muscle tone and how that can affect the inside development as well. Although on the outside she looks great...she even looks a little chubby! That her insides are not developed as well. Without a feeding tube she probably would not even be living at this point. A couple sips of drink and some table food here and there is not enough for her to grown and function.
I will definitely post when we get the results this next week! Thanks to everyone for all their thoughts and prayers!
It's kind of a hard position to be in....you don't want there to be something wrong with your child or for them to have a disease.....but yet it is still taking us an hour to do her tube feedings! She is still only taking 4 ounces at a time....so sometimes I think how can't there be something wrong!
We have tried several times to increase the volume, calorie content, or decrease the amount of time and each attempt is not worth all the vomiting. Overall she is doing better, so we have to focus on the positive. She is still sucking milk up a straw and eating table foods.
The GI doctor at Cincinnati mentioned her low muscle tone and how that can affect the inside development as well. Although on the outside she looks great...she even looks a little chubby! That her insides are not developed as well. Without a feeding tube she probably would not even be living at this point. A couple sips of drink and some table food here and there is not enough for her to grown and function.
I will definitely post when we get the results this next week! Thanks to everyone for all their thoughts and prayers!
Monday, July 13, 2009
Appointment
After just getting back from Colorado yesterday now we are packing for our appointment in Cincinnati. We will leave tomorrow and head to Lafayette for an appointment with her physical therapist. We also have an appointment with Colleen (her feeding therapist) in Indy on the way! Then we will just head to Cincinnati. We have to be at the hospital at 8:30 in the morning on Wednesday and her testing begins at 10:30.
She is having a scope done so she will have to be put to sleep. The probe will be an over night study so we will stay the night in the hospital after her tests are done. She is having biopsies done during the scope but we won't get results until about a week later.
We are scheduled to have allergy testing done with our follow up appointment on August 19th and 20th! So, I will be anxious to see what those tests say!
She is still drinking some out of the straw and eating bites of food. Not a ton at a time...but hopefully we get some answers from our appointments this week!
She is having a scope done so she will have to be put to sleep. The probe will be an over night study so we will stay the night in the hospital after her tests are done. She is having biopsies done during the scope but we won't get results until about a week later.
We are scheduled to have allergy testing done with our follow up appointment on August 19th and 20th! So, I will be anxious to see what those tests say!
She is still drinking some out of the straw and eating bites of food. Not a ton at a time...but hopefully we get some answers from our appointments this week!
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