Friday, May 1, 2009

You Guys Have To Come In And See This!

Since the last post, there have been a lot of things going on. I'll just go ahead and get right into them.

On Friday, April 17, we took Kayley in for a modified barium swallow. This test was to determine whether Kayley can take different thicknesses of liquid without aspirating. A speech therapist and a technician watch the barium, which is fed to her from a bottle (ha), go down the esophagus and into the stomach. As you can imagine, Kayley wasn't too cooperative in drinking the barium. She doesn't drink formula...why would she drink barium??? Anyway, we did get a couple swallows down her even though she was fighting us. From this, they determined that she didn't apirate at all. That's good news. However, they labeled this as a LimitedBarium Swallow because she didn't take a lot of barium.

Also, when Kayley did suck on the bottle a couple times, it was very weak and it looked like she was just chewing on the bottle. The speech therapist told us to mention it to the other speech therapist when we go in for our feeding evaluation. We've always noticed Kayley doing this but figured most of the time it was just that she didn't want to eat because when she actually wants the formula, she can definitely get it. Anyway, it's something that we're going to watch.

On Monday, April 20, we took Kayley to her endoscopy. This is where they put Kayley to sleep and the GI doctor sticks a scope down to Kayley's stomach to see if there is anything unusual going on. If there's one thing you don't want to hear when the doctor gives you the results, its "I had to call my colleagues in to see if they've seen anything like this before!" Yep. Those were pretty much his exact words. What he found was that the opening to Kayley's stomach was larger than normal. Again, large enough that he had to call in his colleagues to see. He even said he had a hard time determining where the esophagus ended and where the stomach began. And to compound the problem, the opening from Kayley's stomach to her small intestine was smaller than normal. So when Kayley's stomach contracts to push the food down through her intestines, the food goes back up the esophagus instead since it's the path of least resistance. The doctor did say that he used the scope to stretch out bottom opening a bit to see if that helped. He said we would see almost immediate results if that were to work. Obviously this isn't good news but we are a little relieved to know what we are dealing with. Some of the options we have are:
  1. Let it go and hope she grows out of it.
  2. Take Kayley in for a procedure to permanently stretch the opening to her small intestine...I think this is called a pyloric balloon dilation .
  3. Take Kayley in for a more risky surgery called a fundoplication. This is wherethey take the upper part of the stomach and wrap it around the opening to her esophagus. This would help in keeping the food from going up the esophagus. We are going to talk to some surgeons about our options with this procedure.

So, for now we have upped the cereal in Kayley's bottle to make it very thick while we await the results of the biopsy the doctor took during the procedure. Mainly, We were waiting to see if the stretching the doctor did with the scope worked out. We'll meet with the surgeons no matter what to see what they think. It's a very real possibility that Kayley will have the fundoplication if the other things don't help. We're hoping we get it resolved before we have to go that far.

Before the endoscopy, Kayley weighed 17 lbs 2 oz with her clothes on.

Next, on Thursday, April 23, we took Kayley in for a feeding evaluation. It was with the speech therapist that we saw back in December. We really liked her the first time so we were happy to be going back. The appointment was at 9 am and we were instructed not to feed Kayley beforehand. So, once we got back to our room, Megan mixed the very thick formula and I started feeding Kayley. And wouldn't you know it, she practically downed the bottle!!! Good girl Kayley, but horrible timing! There was a little bit left but she did very well. We put what was left of the formula into a sippy cup to see what Kayley would do. The therapist wants us to do this often and hopefully Kayley will ween herself off the bottle by wanting the sippy cup. The theory is that if Kayley has control, she will be more comfortable and willing to eat. Next, we moved on to the high chair for baby food. The therapist fed Kayley herself. She started with Gerber Graduate treats crushed up on Kayley's tray. She wanted to see if Kayley would get it on her hands and then bring her hands to her mouth. Kayley got the first part down no problem. She played in the crumbs but never brought them to her mouth. So, the therapist helped her out by putting some on her finger and tranferring it to Kayley's lips. Kayley was curious but not too excited. Next, the therapist moved onto the pears we brought. Kayley wanted nothing to do with them. She was "avoiding." Then, the therapist got out the green beans. They are Kayley's favorite. Kayley started eating right away. She did pretty well for about half the container and then she stopped. Then the therapist put spoonful of green beans on Kayley's tray to play in. Again, Kayley was playing but not interested in tasting. The therapist encouraged us to do the same things when we're at home. Needless to say, feeding time is a mess. The reason for doing these things is that babies go through aprocess when learning to eat...visual, tactile, smell, and then taste. Allowing Kayley to play or touch the food gets her comfortable with the visual and tactile part so that she'll be more comfortable with the smell and taste when that time comes.

So, we got a lot of homework for Kayley. The therapist also thinks Kayley is a good candidate for continuing feeding therapy. Too bad it's almost impossible to get put on the regular schedule. We're currently on the waiting list but the therapist told us off the record that Kayley may be cured by the time we get in.

At this appointment, Kayley weighed 16 lbs 10 oz. It looks like she lost weight but we really don't know because she had her clothes and diaper on last time. We do know that it wasn't a good weigh in though.

Sorry to for using this saying but I think it is appropriate for what happened next. "Fool me once, shame on you. Fool me twice, shame on me." After we got home from the feeding evaluation where Kayley basically downed her bottle, Kayley was an eating machine. She acted like a normal eater. She wanted her bottle, she was hungry, and when we took it away to burp her before she was done, she got mad. She has never acted like this. She would maybe do it for one or two feedings during the day but never continuously. She drank her formula very well the rest of the that day and even the next day. She was taking close to 28 oz a day during that time. We were all very cautiously optimistic. When Kayley's happy, the rest of us are happy. Too bad that was pretty much the end of it. She had 2 great eating days and then went back to her old self. How can that happen? Well, we changed 2 things in the last while that could be the explanation. We made her formula thicker so maybe it stayed down better and didn't give Kayley the painful relux. Or, maybe it was the stretchening of the stomach exit? Kayley was pooping more and actually seemed hungry. Mayber her stomach was emptying better. And maybe after a couple of days, the opening started closing up again. Or maybe she's sick of the thick formula? I personally think it's the opening. If that's the case, maybe the pyloric balloon dilation will fix the issue. Let's hope.

Next, Megan got a call from the GI doctor's nurse. The biopsy came back negative. There was no acid in the lining of Kayley's esophagus meaning that the prevacid is doing its job. That's good news. Through all of Kayley's spitting up, it doesn't appear that its harming Kayley's esophagus. The nurse also mentioned that they are worried that it may be turning behavioral. She is going to check the waiting list for us to see where Kayley is at. Hopefully they can pull some strings. Also, they want to put her on a new drug called periactin. This drug stimulates the appetite. I'm not sure how it's going to work real well if Kayley's stomach isn't emptying. But, we'll know more about that after our upcoming GI appointment. And last, the nurse said they are going to proceed with the pyloric balloon dilation.

So, our appointments continue. We have an appointment with the GI doctor on Wednesday, May 6. We'll learn more about the biopsy results, the plan going forward, and probably which surgeons we will consult with for the fundoplication. Then on Friday, May 8, we take Kayley in for the pyloric balloon dilation. She'll be put to sleep for the procedure. We'll know more about that in the coming days too. Then, on May 11, we go back to the developmental pediatrician. Hopefully with all this stuff going on, we get this resolved.

As for everything else, Kayley is doing great. Marla's blog ( has a video of Kayley crawling for the first time. She's been so close for so long and finally got it. She continues to be very happy and is learning to express it more. She also loves making new sounds. Blowing through her nose is a good one.


  1. Wow! You guys have been super busy!

    I hope and pray that this coming week proves to be a good one and that the doctors get all of this figured out.

    The pictures of her are precious! She is so beautiful!

    Wished you guys lived closer!

  2. It sounds as if your daughter has Achalasia. I've been living with it for many years. After 5 dilatations I had the fundo surgery.