Thursday, February 24, 2011

One step forward two steps back...

Today Ava and I had a very long day at Boston Children's Hospital. I woke up extra early planning for traffic and for once, there was none! We were an hour and a half early for her appointment and of course, the doctors were running over an hour late. We did a lot of coloring, eating, chit chatting with other kids, catching up with the social worker, and even took a trip down to medical records to work on getting copies for our appointment in April with Dr.Harbison. Everyone was captivated by Ava walking around with her new poodle purse-picture will follow tomorrow. I am too tired right now to find my camera :)

Once we finally got to see the doctor I was very excited. I felt sure that Ava was going to reach that 21 pound mark and make Dr.Nurko proud. Imagine my shock when the scale showed that she had not gained at all since last week. Normally this would not be such a shock but this child has been eating nonstop. She even has started drinking 7-8 ounces of her Peptamen Jr. at night!!! Up until the last two weeks she has NEVER been able to tolerate more than 4oz in her stomach at one time without vomiting.

Despite my disappointment in the scale, I was able to hold in my emotions and focus on how great her overall weight gain was over the last three weeks. On February 8th she was 19.8lbs and 33 3/4 inches tall. Today she was 20lbs 15oz 34 inches tall. Her pediatrician says she is still only in the first percentile for height but Dr.Nurko swears according to his, she is now actually on a curve for her height!

My optimism was knocked down a couple notches when Dr.Nurko told me he still thinks it is time to be more aggressive. That he thinks Ava would benefit from tube feedings. I asked them why they feel strongly about tube feedings. I explained that her weight and height are not a huge concern to me, just her health. That if they could tell me that tube feedings would fix her GI issues that I am game. Fiona, his nurse practitioner, said that they will not fix her GI issues but that they may prevent her having trouble developmentally down the road due to her current poor nutrition. This threw me. It makes me feel that by choosing not to place a tube that I am being a bad mom. She is not developmentally behind right now. She has some quirky things but is sure to test out of early intervention in a couple of weeks. If only there were a test that could tell me yes your child is malnutritioned and her body is currently paying the price or no, don't worry she is skinny and kinda short but her brain and organs are fine and always will be if she continues on the path she is on (ie not losing weight but gaining at her snails pace).
I then brought up that at her appointment with the Growth Clinic last week the Speech Pathologist said that Ava's chewing is immature. She has low muscle tone which causes her tire quickly from chewing and she also has trouble manipulating her food in her mouth. We speculate that the reason she is holding food in her mouth at times is not always because she feels as if she swallows she will vomit (which is definitely the case part of the time) but that sometimes it is simply because her mouth is tired of chewing. This is likely also the reason she likes certain foods, mac and cheese, peas, spaghetti O's, blueberries, etc. and swallows them whole. (We started to notice that she does not chew certain foods when she threw up mac and cheese two hours after eating it and none of the noodles were chewed) They told me to go ahead and give her calories in easy forms for her (yogurt, formula, applesauce, pudding, etc) when I feel like she is not getting them through chewing food. They gave me some foods to practice with her that will help her strengthen her jaw-beef jerky, slim jims, licorice-and others that will help learn how to control her bite-cheese puffs & pirate's booty. They also said to work on getting her to take bites instead of shoving a whole cracker in her mouth or putting in three pieces of meat at once. I talked to early intervention this week and next week Carole is coming armed with some ideas and things for us to try with Ava to work on this weakness.

I thought sharing this information would cause Dr.Nurko to feel less attached to the idea of tube feedings. That he would see that we have found something we can practice with her and help her get better at. If she does improve in these areas that amount of calories she takes in by mouth may increase. However, he felt it was just another reason we should resort to tube feedings. He did agree though to wait to do anything until we see Dr.H at the end of April as long as she does not lose weight in between now and then. I was relieved about this but still left there feeling a little disappointed and confused about what is the right thing for my child.


  1. You have gone thru so much with Ava and have come so far. Keep doing what you are doing. She is gaining weight now on a slow but steady incline instead of losing. You did find out she has chewing trouble and can work on that and it will help her to eat more & gain more. She is eating and drinking more than she ever use to so she should start catching up and putting on the weight. The appt. in NY is only a month away and Dr. H said the tube should be as a last resort. You ARE doing the right things and ARE helping your little girl the best way you are able. Keep going with what you believe and feel.

  2. You need to update your blog!

  3. HI Ava
    My name is Jenna and I came across your site. U are an amazing little, courageous determined and strong fighter. U are an inspirational hero and a brave warrior.
    I was born with a rare life threatening disease that stops me from growing.

  4. Sarah, it's time to update your blog! :)