Friday, March 13, 2009

Today's Appointment

Today's appointment went differently than what I expected. Mya completely refused the bottle with the study. (Even though it had been 7 weeks since we had tried a bottle) Dr. Dusick pretty much told us that she will probably never drink out of a bottle again. Mya cannot seem to get the swallow, suck, and breathe pattern down. She did take a few larger swallows with a cup and did aspirate the formula. The only way she can be given thin liquids is through a 1 cc dropper.

She did pass the section of thickened liquids with a cup and dropper. She also passed the baby food section again. So, for right now we are skipping bottles and sippy cups and moving on to teaching her to drink from a regular cup. Which as you would expect is very hard for a 7 1/2 month old! She is more interested in eating the cup at this age!

The even bigger challenge ahead is Mya's severe aversion toward spoon feeding and swallowing in general. All the months of aspirating and NG tube changes has made her very defensive toward anything to do with her face and mouth. She is very guarded and clamps her mouth shut when food comes at her. She is even getting guarded when I go to wash her face!

Dr. Dusick also advised us to give her suckers or anything she can put in her mouth that has flavor but does not require her to swallow. Hopefully this will help her start to enjoy different tastes and get through the fear that she has.

Mya will still need to have the G-Tube placed. (We have the surgery consultation on March 24th) She will have to be drinking and eating well enough on her own for several months before tube feeding can be stopped.

On top of the therapy she is getting now, we will start taking her to Riley once a week to meet with their feeding team to help her overcome these aversions toward eating. One thing that Dr. Dusick did say was that she feels Mya will some day eat and drink like a "normal" child. But it is going to be a long road ahead of us.

I feel that getting the G-Tube will help immensely. Yesterday she pulled the NG out 2 times! She is getting more active and her face is getting more and more irritated the more tape we pile on it! Poor thing!!

So....I guess for now the plan is try feeding with baby food 3 times per day, attempt cup feedings with thickened juices/formula, give 4-5 dropper fulls of thin liquids 3 times a day, and continue therapy.

Mya has been such a great sport through all of this!!! I just hope her guard will come down and she will start to enjoy eating! Thanks for all your prayers!! Where would we be without all your support!!


  1. Have faith my dears. Mya is blessed to have parents like you two and such a loving and supportive extended family. God knows what He is doing and will take care of you all. One day she'll be eating french fries with her burger! Love this blog too!

  2. Thanks Kay! I hope so! I picture myself telling her all about this when she is older!!! Look what you put your mother through! Haha! Hope the school year is going well for you!

  3. Hi Matt and Amanda:
    Thank you for letting us know about your blog. As I look at the pictures and the beautiful smile on Mya's face one would never sense that she is struggling at all. When Nicholas was born it was a great struggle that really gripped our hearts. Those 100 days in the NIC unit seemed like they would never end. Jim and Sheri agonized over it all so much for their first baby but with faith in the Lord and working through it all a day at a time with the doctors, we see God's Hand all over the entire trial today. What a beautiful little boy Nicholas is heading to his third birthday. I believe that will be true for Mya too. We will all look back and praise God for His goodness to her and you. So keep trusting and take it a day at a time. Our love and prayers are with you. Remember, Mya is God's child first and He loves her more than we can imagine. We do miss seeing you now at church but be assured that everyone is asking and praying. I will share this with our email prayer chain. Gloria is going to call you soon about some items she thinks you might want to look at for your home.
    Love, Pastor Bill and Gloria

  4. Hi Matt & Amanda,

    Just heard about this Blog, so thought I would take a look at it.

    What a story....I had never heard the extent of your situation. Therefore, know that you and your family are in our prayers. We all hope that Mya continues to show signs of strength and will begin to eat normal shortly.

    I will keep updated with this.
    Carol Hendress