We had a great holiday with our friends and family! Mya LOVED opening gifts and of course got way too many!! We are so thankful for the wonderful family we are surrounded by!!!
Mya's personality is just booming! She is a crazy and very active kid!! She was just picking her nose earlier today and holding up her finger telling me booger!!! I think Daddy must have taught her that!!! She absolutely loves books and learning new words! She amazes me every day with what she remembers. She can say everyone's name in our immediate family and adores all of her cousins. We keep pictures of everyone on the fridge so daily she points and calls everyone's name out!
One thing is for sure.....she is Daddy's little girl!!! We laugh because she actually loves tractors and playing out in the shop with Matt. You can't mention outside without her running to the door!
We are still struggling with Mya's eating issues. The First Steps program is discharging her from their care as of this week. So...in a sense I feel like I have been left to deal with all the issues on my own. They basically say she can now chew and lateralize the food appropriately. She is safe to drink thickened liquids and can do so. So....basically we have a child that can eat and drink but is still dependent on a tube.
For over a year now Mya has not had to eat and drink on her own. We actually did a 2 day weaning trial to hopefully increase her eating and drinking. In a nut shell....she didn't get milk through her tube for 2 days (instead we gave her pedialyte to keep her hydrated). People do this in hopes that it will basically get the child hungry and thirty enough to initiate it on their own. After 2 days Mya's eating had at least doubled and she drank 9 1/2 ounces of milk on her own.
I was completely amazed by her eating and drinking. We had no vomiting and no gagging!! I felt like she actually wanted to eat. I was not having to force feed my child! After several days back on track from our weaning trial we took Mya to get a weight check since it had been 2 months since her last appointment with her pediatrician. Not to our surprise Mya weighed only 19 lbs. 9 oz. Only 1 oz. gained in over 2 months!!!!
For several months I had been in contact with a therapist that thought he could really help Mya. After basically only half a pound weight gain over the last 6 months I had to come to reality and had to realize that what we are doing is not working. She is still only eating tablespoons of food a day and drinking a few ounces here and there. Both the therapist in Indy and through First Steps basically don't know what else to do to the poor kid so Matt and I were left with a huge decision.
Well....the decision we made is to take Mya to see Mr. Zimmerman and hope that he can help her. He has reviewed all her medical records, has talked with me on many occasions, and we also mailed video footage of her during meals. He seems very optimistic that we will return to Indiana with a child who will no longer need a feeding tube to eat, drink, or get the calories she needs.
The simple thought of it truly brings tears to my eyes thinking that this could actually work....but also in the back of my mind I have to realize it may not work. Mr. Zimmerman sees great potential in Mya as do Matt and I! We all see a kid that due to medical complications has become tube dependent. Mya is only 17 months old and this is all she knows. We are hoping to change her mind set about eating and make it an enjoyable experience.
I have done so much research and talked with so many other mothers over the last 17 months of Mya's life and everything has led me back to this clinic. I started chatting with him over emails and each month I would go back to him. I honestly believe we are doing the right thing for Mya to make this transition as easy as possible. (Which is not going to be easy by any means) We are basically going to undue everything that has happened over the last 17 months so it is going to take time.
We will spend 4-6 weeks give or take in Los Altos California. Matt, Mya, and I will go to his clinic everyday for 4 meals a day. Mya is going to be started back on purees so that we can make her meals high calorie and easier for her to tolerate. During the 4-6 weeks we are there Mya will be transitioned off the feeding tube and will remain on high calorie purees and milk. After she is stable and off the feeding tube for 2-3 months we will transition her off purees to regular foods.
Basically we are starting over.....just how you feed a baby purees and transition them onto regular table food. It is going to be a long process but I will have Mr. Zimmerman's support in California and every step of the way at home. I feel like this is the safest way for Mya to come off the tube. She can't afford to not have her calories or not gain weight. One of the best things about his clinic is that he works with only one intensive patient at a time. We are not going to be rushed out because the next child is in the waiting room. We basically have him all to ourselves! haha! Through out our time there we will be educated about how to prepare these recipes and about how to handle any set backs we may have.
We are very excited and hopeful!!!! This is probably coming as a complete shock to most of you because Matt and I have kept our decision so private. As you can see this is a HUGE step so it took a lot of consideration. But at the end of the day.....we have to try!!! Mya is the reason why we get up every morning and if we know someone that whole heartedly feels like they can help us we have to do it! So please say a prayer for Mya that she has the strength and the will to get through this. We leave on January 16th and start therapy on the 18th!!!
This could be one of the worst decisions we have ever made...but on the other hand it could truly be a miracle!!! And I really think we are going to come home with a miracle!!!