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!

Sunday, April 18, 2010

Mya has been a week on solid table foods now and we are still plugging along!! Overall she is doing great!! We have to make eating fun and sometimes even a game but that's okay for now. She especially does well watching others eat what she is having. I guess she thinks.....well since Mommy is eating it....it can't be that bad! haha!!

Her cousins have been wonderful for her to be around since they are more her age! Emma gives her high fives for bites and we all clap for the kids when they eat so well! We are going to keep the positive comments coming and hope for the best!

She has tried a ton of new foods over the last week....even PIZZA!!!! I thought I would never say that my kid ate pizza!! We leave tomorrow for Cincinnati so I'll be sure to update what happens at the appointment but I'm hoping they are very very pleased with how well she is doing!
Having ice cream with her cousins!!! Can you believe it???

Mya eating spaghetti!!! You can tell from the picture I'm one proud mama!!

Wednesday, April 14, 2010

Best day ever!

Yesterday was by far Mya's best day of eating regular table food since the little squirt was born!!! We are so proud of her!!! So far she has been two whole days with all table food and no purees. We are hoping and praying that this trend continues!!!

Yesterday we went to Wendy's and she ate part of a cheese burger and french fries!!! To be honest she had never eaten the bun....hamburger...and cheese in one bit but yesterday she did!!!! We are all totally excited!!

We have had a few little vomits here and there but nothing that is not under control. We are heading to Cincinnati next Tuesday for them to take a look at her and get a back-up plan in place if this eating does not continue. Plus her button is sticking out way to far and she needs it re-fit.

Although Ben's method's were strict I 100% believe that's what Mya needed to get over this hump. She needed someone to push her and that's exactly what he did. She has overcome a lot of problems in the last few months. We still have a ways to go but we will get there! Trust me...we won't give up until we get there!

For right now we are doing at least 5 smaller meals with her a day until she gets used to eating bigger amounts all at once. Thanks to everyone for their continued prayers! I went to make a quick Wal-Mart trip the other day and ended up there for almost 2 hours because I saw so many people that asked and cared about her! What a great feeling it is to know that Mya is so loved!!

Tuesday, April 13, 2010

First full meal!

Mya had her first full meal of table food last night!!! She ate an entire meatball, all her potatoes, and all her corn!!! I hope we are slowly but surely making our way to a regular diet for her! Hopefully every day just gets better and better!

Mya had her first tractor ride with Matt yesterday since he started planting. Hopefully we have a smooth spring and things can get back to normal around here! Sometimes I wonder if things really are ever normal....haha!!

Keep those prayers coming for miss Mya!!! She is doing great!
Our little farm girl!!!

Riding with Grandpa!!

Easter picture with Daddy!


Their favorite toy.....a whistle!!!

Happy Easter!!!

Friday, April 9, 2010

Update since we have been home!

A little update on Mya since we have been home. She is still off her feeding tube and wanting to drink milk like a champ. She is pretty much maintaining her weight at this point but at least she is not losing. We are really struggling and it has been tough but every week is getting a little better. We have been in close contact with Ben and have sent him feeding footage twice now to get any feedback that may help us out.

Our attempt to keep her healthy miserably failed since she already has a cold...cough...and runny nose. I swear....any little bug the poor thing gets! The extra mucus is just never good for a kid that loves to puke! I know....you totally want to hear about my kids mucus! We have seen a spike in her vomiting since she has gotten a cold but it's manageable. (She is still able to keep enough down to stay hydrated and full of energy for sure!)

I wish I had a better post to type but it is what it is! She is showing a lot of resistance to eating the purees but with time we are slowly seeing her guard go down. We are going to stick with it for a few months and see what happens.

No matter what happens we are going to keep fighting for her!!