Friday, December 10, 2010

How Sweet It Is!!

Mya is doing great!!! She is weighing more than ever and doing so well! She is finally off all the thickener in her drink and can even have water now!! She was also discharged from Cincinnati Children's Hospital! I started a 4 day a week job at Clarian so Mya is now going to daycare 4 days a week and loves it! Things are finally moving in the right direction in our household!!!

We feel very blessed for all the support we have received over the last 2 & 1/2 years!!! We have a growing, potty trained, intelligent little girl on our hands!!! Could life get any better than that??

Here is a little article from Los Altos Feeding that we did after leaving California last winter! February 2nd will be the "anniversary" that Mya was officially done with tube feedings!!! Although she has no memory of the therapy or being tube fed I still think it will be a special day for us!!!

Happy Holiday!!!!

Friday, August 13, 2010

Happy 2nd Birthday Mya Marie!

Has it really been 2 months since my last post??

I can't believe I have not posted anything for the last 2 months!!! But sometimes no news can be good news right! Overall things are going well with Mya! She just celebrated her 2nd Birthday on July 28th and reached 23 lbs. exactly! We went and spent 2 weeks at the program in Evansville and are actually going to spend more time there in September.

Since Mya has been eating everything by mouth a few "new" problems have arised that we are working out. We are trying a medicine now to help stimulate her stomach to empty a bit quicker. (without going into great detail....she was vomiting up handfuls of food that should have been processed hours prior) So basically she has all this old food sitting in her stomach so she does not feel overly hungry. We did a one month trial with little result but have increased the dose of the medication and so far are pretty happy with the result.

When we spent the two weeks in Evansville we worked a lot with making the meal more constructive. She eats in her booster seat at all her meals except for the occasional snack and we used a timer until she got used to sitting down and eating for 20-30 minutes at a time. She totally understood the timer concept and knew that she had to sit and eat until the timer went beep-beep!

She still has volume issues with mixing a lot of drink with food but we are able to manage and she drinks plenty of fluids throughout the day. She is also drinking some juice now which she never did before. We are gradually cutting back the thickener in her milk as well and have not recognized any signs of aspiration. Overall the doctors in Cinci are happy with her growth and so are we! She has had a few head colds over the summer which never seems to help her eating.

She is still lacking in her chewing/swallowing skills. During her evaluation she was placed at the eating skills of an 11 month old. But really she did not eat/drink much at all by mouth for the majority of her life so how could be really expect her skills to be age appropriate. We also have been able to work with her oral sensitivity issues as well.

I have actually started back working on Monday's and Wednesday's at the Health Clinic of Monon which has been great. I work with a great group of people and I think it's been a good opportunity for me! Mya also fractured her leg a few weeks ago and ended up in a cast for a few weeks over her Birthday! If it's not one thing it's another with the poor kiddo! She talks in full sentences now...knows her colors....where she lives...her full name...shapes...etc. She is at the age where they love peek-a-boo and she absolutely loves being outside on the farm!

We thank everyone for their continued prayers for Mya! Her tube site closed in a matter of 4-5 days without any problems at all!!

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!!

Tuesday, April 20, 2010

Cinci Appointment

Overall the appointment with the Feeding Team in Cincinnati went well and was reassuring. We are all not quite ready to take that tube out permanently but we were able to get a new one put in and it fits so much better!

The doctor's were very pleased to see all the progress Mya has made since we were there in November for sure. She went from being like 90% tube fed to eating (although it's with a lot of encouragement) and drinking on her own!

I love Cincinnati because I feel like they look at the whole picture instead of just focusing on a growth chart. I don't need a growth chart to tell me that my kid is small....I just want to know that she is healthy!! Which they think she is!! For her height....she is 93% on her weight! So for her height she weighs a totally appropriate amount.

We are having to work pretty hard at times to encourage Mya to eat her meals but it is happening. We are looking into going to Cincinnati or possibly a hospital in Evansville where an OT....speech therapist....behavioral therapist....etc could work with her for 1...2....3....or how many ever weeks they find appropriate. The full team was meeting after we left so they are going to let me know what they decided within the next week hopefully.

So...we'll see! For now we are going to keep doing what we are doing and add a lot of butter....cream....etc to add some fat to her meals. She has come leaps and bounds in the last few months for sure! They also mentioned a medication that stimulates hunger but right now we are not going to go that far yet. At least we know that their is help out there if and when we need it!