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!!!

Wednesday, July 22, 2009


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!

Sunday, July 19, 2009

Giving Daddy a bite!!!

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 hopefully we get more good news this next week!

It's kind of a hard position to be 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 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!
Trying to keep the little booger busy while in the hospital!

Monday, July 13, 2009


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!

Thursday, July 2, 2009

Exciting News!

Well...we have some exciting news!!! Mya is drinking out of her straw cup!! Not a ton....but she is drinking!!!! It has been months and months since she actually sucked on something other than her pacifier!! This has just been a few development within the last 5 days!

I was afraid to blog about it honestly...I didn't want to jinx it! She is not consistently drinking, but the simple fact that she is sucking milk up a straw and into her mouth is HUGE for her!!!

I couldn't be more proud of her!!! We are trying all sorts of different soft table foods and she is doing pretty well considering! Bananas, sweet potatoes, pancakes, peaches, pears, and peas are a few new things we have tried recently.

The milk that we actually got her to drink was Vitamin D milk...not the nasty formula she takes through her feeding tube. She actually developed a rash on her chin and arm so the doctor is considering doing allergy testing when we go on July 15th to Cincinnati.

For now we are using Rice Milk for her to drink orally just in case she does have an allergy or sensitivity to milk. (The formula she takes is not milk based by the way).

I am actually leaving next Wednesday to go to one of my college roommates weddings in Colorado for a few this will be the first time I will be away from her and Matt for an extended period of time! I am really excited for a little relaxation and time with the old gag from Ball State! I'm sure Mya will enjoy a few days of bonding with her Daddy and Grandparents!

Thanks again for all those who pray for our little girl! There were times when I wondered if she would ever eat or drink! But everyday I get a renewing feeling that someday she will eat like a normal child her age! Whether that be 6 months or 3 years from now, we are not giving up! She is a little fighter and so are her parents!!!

Happy 4th of July everyone!