Monday, April 5, 2010


Yes, I've been a bad blogger again. Sorry! I don't know where the time goes!

Just some quick updates since it is already so late...

Harlie is doing pretty well drinking from a sippy cup. But, if it isn't one thing, it's another. And while she is pretty cooperative and willing to drink - it seems her belly is having a hard time. Today she drank 5 ounces without a problem. Then she threw up 4 ounces. I'm sure that's hard to visualize. But, trust me when I say that 4 ounces is A LOT to throw up. I think it is the most I have ever seen from her. Ever. And that is saying a lot considering I've seen her vomit an insane amount of times. Multiple times per day for years adds up quick.

Anyway, I simply cannot describe how frustrating and disappointing it is to sit there and work so hard to get that food in, just to have it all be for nothing. And there is nothing I can do about it. If only the GI docs could figure out what's wrong...

Now, I'm no doc, but I can tell you that it is clearly a volume issue. Her belly just can't handle the volume in a short amount of time. Her feeding sessions are 30 minutes long. Plenty of time for a normal kid to eat a meal/drink a bottle. Heck, Cooper would scarf down an 8 ounce bottle in just a few minutes. I don't think Harlie has EVER had a feeding that large.

We've been working on trying to get her to tolerate a larger feeding or a quicker feeding rate for her whole life. Three and a half years and we are STILL struggling with volume issues! And now that she can drink by mouth, her belly isn't going to cooperate. Seriously?

Anyway, Harlie is in a big girl bed now! She is loving it! I think she is so much more comfortable. It has to feel better for her back than the hard crib mattress she was STILL sleeping on!!!! Ugh. Anyway, I will post pictures soon. It is still a work in progress as Tom still has to make the headboard. I think it is going to be so cute!

And Tom's little sister, Amanda, was in a car accident yesterday (Sunday). She broke her back (L1, I think) and is in the hospital in PA. We are all very thankful that she's okay. She got her brace today and will wear it (depending on how she heals) for four to six MONTHS! So far it has been a bit of a struggle finding the right pain meds for her. But hopefully this third one will do the trick so she can get some rest tonight and some relief tomorrow. Her recovery is not going to be easy. So, please send her some good, healing thoughts.

Well, I hope you all had a nice Easter. The Easter Bunny was very thoughtful (and smart) and brought Harlie her very own helmet. I guess word travels fast. I think she might have to wear it all the time, though. Today she was stepping down from a very high curb (something she normally would never do without help - I guess she was feeling brave and confident) and almost did a face plant. I stopped to watch her go down, but was not close enough to grab her. Luckily, Jennifer was there, and with her hands full, she still managed to catch the back of Harlie's shirt to stop her from hitting the pavement. It was a close one! And a very impressive save. Thanks Jennifer!

Oh, and another thing... Harlie had a hearing appointment today. She was tested again to see if she could hear any of those low frequency sounds. But, her breathing was so loud today, she said she didn't know if Harlie could hear it anyway. So, we'll just keep trying and maybe one day we'll catch her when her breathing isn't so loud and maybe then we'll get a really good idea of how low she can hear.

We did get another mold made of her ear, though. We have been having a heck of a time keeping her aid in place. It just won't stay secure in her ear canal. Her ear canal is just so darn tiny! So, hopefully they'll be able to get this next one to fit better.

Okay, NOW I'm done.

Take care!


Just Diane said...

Sorry to hear she is having a hard time keeping it all down but glad she is doing good overall.

Susan said...

Ugg. I've been there. When Ainsley was a baby I worked so hard to have her nurse and then she'd vomit and it would kill me. Because it can also cause them to backslide on their progress. And the hearing test appointment being a complete waste. Twice we had that happen. Sorry things aren't easier at the moment. At least things are going well with her big girl bed. Can't wait to see pictures.

I'm thinking good thoughts for Tom's sister.

Thanks for all the nice comments on Ainsley's surgery.

Beverley said...

Volume...what a nightmare. Leyda does eat 3 snack/meals a day and grazes in between. When she was on her tube we could do 150 mls in 30 mins tops. If we with hold the grazing she does eat more...but not we just follow her lead. Even now, when she drinks its only an ounce or so of water at a time.

Let Harlie guide you. Leyda's tube has been out 18months.