We took a little break from the blog while my parents were here for a few days! Overall Mya is doing great. She has been off the tube for 2 weeks as of today! The food volume is where it needs to be consistently now. We have tried adding back in milk the last 2 days and it is not going as well as we hope. We are going to wait a few more days and try again. If it doesn't work out we are just going to stick with the sippy cup and really monitor the intake.
She is doing a great job controlling the vomiting with the food but the milk is much harder for her. So basically we give her the 6-7 oz. of milk over an hour or so with the sippy cup. (It's by no means a perfect meal or situation but much better than the tube!) Over time she will get more and more used to these bigger volumes!
She is crying less and less with the meals and has had several with no crying at all. The meals are taking less than 20 minutes consistently so we are on track!
We had a great visit with my parents and it couldn't have come at a better time for us! We are a little over half way through! But I feel like we are definitely beyond a lot of the hard stuff. We are going to have some bad meals here and there when we get home and I'm sure a few vomits here and there. But overall this is going to be a success! We are NOT going back to that horrible feeding tube!
In just a few short weeks we have seen a total change in Mya. It's pretty amazing really! She still has her share of issues but of course we can't expect them to all be gone with a snap of a finger! But for now we have a growing....healthly...happy....eating....drinking....tube free child!!!! What more could we ask for!!
We have several months at home where we are going to have to stick to the protocol to a T. I will have to be home at meal time no matter what the circumstance. I guess I don't have a "typical" 8-5 job.....but my job is going to be keeping Mya eating and drinking and off her tube for several months. After 2-3 months with the help of Ben we will progressively transition her off purees to "regular" foods.
I know this all must seem a bit crazy. Mainly because she looks like any other kid you would see but she has developed a feeding disorder. Matt and I are both dedicated to getting her well! I am so unbelievably grateful for Ben and his services. Without his help I honestly think Mya would have been tube fed for several more years. It honestly scares me to think what kind of mess we would be in then!
I hope one day we look back at this and it is a small thing. But for the last year and a half it has been very real to us. We have went to doctor after doctor...therapist after therapist. We have done test after test. It has consumed our lives because this is our child! You can't really describe the emotions...worry....stress....concern having a sick child does to you. I can't imagine what some parents go through having a child that is so much worse off than Mya. I honestly don't know how they do it! This has been enough stress for all of us that's for sure! We have had great friends...family...and an entire community behind us and that has made all the difference! Thank you to everyone for all your support!
We will keep updating the blog.....good or bad! But I think a lot of those bad days are behind us! For now we are going to keep on plugging away and hopefully be home in Indiana mid-March! I guess we are going to skip winter all together!