Tuesday, June 23, 2009

No news is good news!

Nothing much to really blog about this week! So, I thought I would share a few pictures!!

At Columbia Park!

She was not afraid of the animals at all!

Getting pulled around by Daddy!

Our pretty little girl!

Thursday, June 18, 2009

18lbs. 6oz.

We went and saw the surgeon today because Mya's granulation tissue grew back again! Despite 5 different treatments! The surgeon decided to prescribe her an ointment and see if that helps. (Since it grew back after 5 times of burning it off, she has no reason to think it won't just grow back again!)

She weighed 18lbs. 6 oz.!! I love her surgeon at Riley.....she asking us and seems more concerned than her doctor down there!! I can't wait until we can get into Cincinnati! I am a control freak and this situation is totally out of my hands....and that of course doesn't settle well with me!!

We have been doing something different with her last night bottle (which is usually when she would throw up). I give her 1 ounce over 15 minutes, wait 30 minutes, give another ounce over 15 minutes, wait 30 minutes, and repeat until she gets her 4 ounces. So far....it has been working! Although it does not help Matt and I's sleeping....it is helping Mya!

I sometimes wonder if she will ever eat and drink enough orally to not have a feeding tube. She can barely handle taking 4 ounces of formula over an hour....how will she ever drink it from a cup in 15 minutes!

She is truly a beautiful baby and I don't know where I would be without her! I can't believe we are rapidly approaching her 1st Birthday!! I want her Birthday to be a day of celebration because we do have so much to be thankful for!

Tuesday, June 16, 2009

July 15th

We were able to bump Mya's Cincinnati appointment up one week! We are now going for testing on July 15th! Yay!!

She is still doing fairly well with solids. We are trying a range of things to find out what she likes and dislikes. Mya is very stubborn....loves to feed herself! She has tried green beans, peas, carrots, gold fish crackers, bananas, mandarin oranges, pasta, cheetos, etc!! I hope that she continues to improve! We are struggling with drinking...only a few sips a day.

She ran into some minor urinary problems so the doctors office wanted us to give her more fluids. Of course more fluids for Mya always = more vomiting! So...once again we are struggling with vomiting over the last week and a half!

We are increasing her Prevacid to twice a day and hoping and praying her appointment can be moved quicker than July 15th! (Although I am sooo thankful she can get in even that quick)!

I am so amazed how many people you meet that run into the same problems with their own children! Such a small world!!!

Tuesday, June 9, 2009

Farming with Daddy!

It all started with a green bean!

Well...we have a ton of great news to blog this week!!! Mya has probably had the best week we have had for months!!! She is crawling, cruising, and pulling herself up on everything! She is saying all new sounds.....and unfortunately has discovered she can also spit!! haha! She is getting her very first tooth finally also! Can things get any better......OH YES!!

Vomiting has also been decreasing! She is only throwing up max once a day or every other day!! But wait...it gets better!! She is eating food...I mean real food!!!! Her therapist and I have been discussing starting "table" foods with her and yesterday I finally got brave enough to try! She ended up eating an entire green bean, a couple bites of banana, and a few bites of cooked carrots!!!

Today with the therapist we tried one of the gerber pasta meals and she ate bites!!! Today was such a great day!! She is picking up puffs and other dissolvables really well also! Although she ended up in a spaghetti sauce mess it was so worth it! I really think we are well on our way! We still have a ton of work to do especially with drinking, but we are finally making some progress!

I hope I am not jinxing myself for blogging this good news but I really wanted to share my joy!!! I pray that Mya continues to improve and we get her the help she needs!!! Thank you to everyone for your prayers and for putting up with me!! I know I have been a complete disaster the last 10 months!!! I have truly been an emotional roller coaster through all of this!!! Hopefully we have more good news to blog in the next few days!!

Wednesday, June 3, 2009

18 pounds!

Mya has made it to 18 pounds now!!! I never thought a couple ounces would make me so happy! She is doing pretty well over the last week. We are going a day here and there without vomiting! Her skin around her g-tube is getting better each day. The dressings are helping a ton. No tub baths or swimming for awhile but there is an end in sight!

I have been trying to stay positive! Colleen her feeding therapist is really encouraging for us! She is always giving us new food ideas that Mya seems to like!! We'll keep working at it! I never thought it would be so hard to feed a child!

I had once told a relative that God would not give him anything that he could not handle so I think I need to start taking my own advice!