Sunday, November 22, 2009

A day at the park!!!
It has been so long since I have updated my blog!!! The guys are still in the fields so things have been pretty crazy around here! I am looking forward to Thanksgiving in a few short days and spending time with the family!

We are all doing pretty good around here. Mya has such a cute personality it's hilarious! She is saying all kinds of words and absolutely loves to be outside! We have been out enjoying the warmer weather while it lasts!

For the first time in months (it was actually on my Birthday) Mya drank over 10oz. of thickened milk from her straw cup! heard me right!! 10 oz!!!! It was by far the best Birthday gift I have ever received. Not to my surprise though she has not drank that much milk since. She has typically been drinking about 2-4 oz. a day which is still great! She is completely off the formula and totally on pediasure through her g-tube.

I have so many mixed emotions about Mya. I know that she can drink and eat....but it's such a struggle to get her off this darn tube. I mean can you really just not give the kid any tube feedings and force her to eat?? She is obviously not growing at a rapid rate so we are still taking a casual approach and kind of letting her wean herself off the tube. If she drinks we just take that amount off the tube feeding we give next.

Their is a website that I have become very familiar with that has helped me a ton! It's basically a resource for parents to tell their story, share ideas, and talk about feeding tubes. So many of the things these women are saying I can relate to so well! I guess it makes me feel like I am not the only person on the planet by far that is dealing with feeding tube dependency. Because lets face it my child is dependent on her feeding tube. I carry the syringe in the room and she sits on my lap....leans back...and is ready to "get her milk." The other day I found myself explaining to her..."Now Mya if you would just drink the milk we won't have to give it through your tube. Think of how much easier that would be." Like a 16 month old is going to get it! haha!

She has officially had her tube over a year now and when I think back she has made so much progress!!! I couldn't be more proud of her for all that she has over come and I couldn't love her more if I tried! I guess this is just another stepping stone in our lives that we will get through. One way or another! All of this has been tough on our marriage, tough on our family, and most importantly tough on little Mya!! I think I have put on 20 pounds and cut off over 10 inches of my hair in the process! Too bad I couldn't give a few pounds to Mya! She has still not yet reached the 20 pound mark!

I greatly appreciate all the prayers through out our journey!! All this feeding tube stuff has basically become our normal and we are getting along just fine! We are headed to get more granulation tissue treatments from her surgeon on Tuesday. They are actually going to instruct us on it (like we have not seen it done like a dozen times!) and then we can start doing it here at home. The tissue is becoming quite painful and Mya actually says ouch sometimes when you have to attach the tube so it needs to be done. Thanks again!

Happy Thanksgiving Everyone!!!!

Friday, November 6, 2009

Happy Halloween!!!

Playing with Grandma at the hotel in Cincinnati!

Cincinnati Appointments

We had a good trip up to Cincinnati this week. Mya would only take 3 drinks during her swallow study...but did pass with thin liquids during those 3 drinks! We are to cautiously start cutting back on the thickener in her milk and juices. We can still offer her thin liquids in an open cup since I can kind of control the amount she is getting.

Since she had gone several hours without food or a drink she ate really well for the therapist! They were really impressed with how well she is doing with solid foods! We are also going to cut back on the number of ounces of milk she gets a day to make her more hungry to eat solid foods. We are going to strictly give her pedisure for her milk since it has 10 more calories per ounce compared to whole milk.

Previously she was getting 28 to 30 ounces of milk/pedisure per day and now she is going to get 22 ounces of pedisure. So far it seems to be helping with the hunger factor! We are also down to 4 feeding per day!!

We also did an MRI of Mya's brain while we were there. She had to be put to sleep again but did well with the recovery. The tests results came back normal but they do want to repeat the test in 6-12 months to make sure everything is developing appropriately. Overall we had a great trip! She also got her granulation tissue treated and got a new button put in while we were there!

Thanks for all your prayers and I hope everyone has a great weekend!