Thursday, May 27, 2010

Mya is officially tube free!!!!

We spent the last couple days going to doctor's appointments at Cincinnati and the hospital in Evansville. It was a long couple of days but well worth the trips! We were able to take Mya's feeding tube out on Tuesday!! (I was actually the one that removed it while the doctor held her down!) She did well and is following her growth curve! The doctors would have preferred to leave the tube in another month or two but she has been getting horrible granulation tissue and I couldn't have her go through skin burning for the next month or two. She did have to have it done right before we took it out to clear up the extra skin but so far so good. It is not leaking much at all. We have to change the bandage 2-3 times a day but other than that it should grow shut on it's own. We go back to Cinci at the end of June for them to check it and make sure she is still growing appropriately. If the site is not closed by the end of June she will probably have to have it surgically closed. Let's pray that doesn't happen!!

What a great day!!! She had a feeding tube since she was 4 1/2 months old so what a change!!

We had her evaluated at the Feeding Clinic in Evansville as planned to see if they could help us along with her feeding skills. Don't get me wrong.....Mya is doing great eating compared to 6 months ago but she does lack some of the basic skills of chewing well...lateralizing food.....etc. She takes very small bites so meals take usually 35-45 minutes. (For example a typical child her age would eat a chicken nugget in 4-5 bites and Mya eats it in 15 or so bites.)

Mya is capable of eating and drinking but needs help fine tuning all the skills she didn't use for the first year and a half of her life. We loved the facility in Evansville and think they can really help her take the last step in her eating problems!

We are so excited for a tube free child and are so thankful for all the prayers along the way! We are waiting to hear back about insurance approval for the Evansville program! We'll keep you posted!

Saturday, May 8, 2010

Happy Mother's Day!

I think I have to be the proudest mom on the face of the planet!! Mya is doing so well with her eating and drinking I just can't believe it! She ate an entire hot dog tonight!! I am so unbelievably proud of her!

We truly have soo much to be thankful for!! I couldn't have done it without the support of my family and friends!! Everyone has been so amazing!! I feel each day that my worries over Mya's eating are getting less and less. We randomly put her on the scale at home and she is weighing more than she has ever weighed so she is doing great!

I am so grateful for the opportunity to go out to California and get Mya help! Thank you to all those who helped us out financially and supported us! I am keeping all the cards.... pictures.... valentines...etc. to show Mya when she gets older all the people that love her and prayed for her! We are so thankful!! She went from getting over 90% of her calories via feeding tube to being 100% orally eating and drinking!!!

We go back to the doctor at the end of the month so I am really hoping to get the tube taken out. She is getting more granulation tissue built up and I don't see any sense on putting her through skin burning again at all!! So cross your fingers they let us!

Happy Mother's Day to all those great Mommy's out there!! But I have to tell you...I think I was blessed with one of the best Mom's out there!! I love you Mom!!!

Monday, May 3, 2010

Nothing new!

Nothing new on our end!! Mya is still chugging along with her eating and drinking. She had chicken and noodles today for lunch! The vomiting at this point is few and far between. I think we have had one in the last 2 weeks! She is able to mix her milk and her food now as well and is doing fine with it!

She is still maintaining her weight (according to our home scale) and maybe even gained a few ounces! We are going for an evaluation at the hospital in Evansville next month to see if they think they can help her at all. But secretly I am hoping we won't have to end up needing their help. We are all ready to enjoy the warm weather that's coming and try to just relax for a change!!