Monday, March 9, 2009

Heart cath tomorrow

From my lack of posting, one would think I don't have anything to say. But I have SO much to say! But if I said it all in one post, it would be forever long and I don't have the time to write that much at one sitting, and I'm sure you don't have time to read it all in one sitting. So, I'll just start with the basics...

Heart Cath

Tomorrow morning (Tuesday) Harlie has her pre-op heart cath at MCV. This will be her 4th cath so far. I've been a bit worried because she hasn't been feeling well. And at 3am today she had a fever of 101.8. So, I went on ahead and took her to see her pediatrician so he could help me decide if she should have the cath tomorrow. Since this is a pre-op cath, it needs to be done within a certain time frame and with her surgery scheduled for April 2nd, we don't have a big window for re-scheduling. Anyway, she's fine. No ear infection, no more fevers, and she seemed okay today overall. She definitely has a ton of secretions, but I think that's pretty typical for this time of year. There's always something going around so I'm hoping that she'll clear up soon. I know she is so tired of her coughing spells. Anyway, hopefully the cath will be pretty routine with no surprises. Keep your fingers crossed!

Speech Therapy

Due to the snow last weekend, her usual Monday speech therapy session was rescheduled for this past Friday. So, we had ST on Friday and again today for her normal Monday session. Friday's was pretty exhausting for me. Because her secretions are out of control, there is no way she can handle wearing her speaking valve, so we've been focusing on sign language. Michelle gets out a bunch of toys (like a baby doll with a bag full of accessories, Mister Potato Head, or books, etc.) and while she's playing with Harlie, she teaches her new signs, sees what Harlie already knows and how to put them all together.

The whole time I'm sitting there watching, I'm willing Harlie to show her what she knows. But just like a typical toddler, she would just sit there and stare at her. It is so frustrating! I would tell Michelle, "oh yeah, she knows that one, and uses it all the time at home." Then... nothing! Ugh. Plus, I'm learning new signs, too. So, after an hour of that, both Harlie and I are spent. Harlie goes home and takes a nap and I have to go on to the next item on my to-do list. But, after having two sessions so close together, I think Harlie is getting more comfortable there and with Michelle. But, it's a lot of hard work in an hour and near the end Harlie starts signing, "let's go." I can't tell you how thankful I am to be able to communicate with her as much as we do. Don't get me wrong, there are still plenty of times that I don't know what she's trying to say - but those times just make me more more thankful for the times I can understand her.

Cooper

I can't remember how much I've talked about Cooper lately, so I'll give a little update on him. He had his 5-month check-up last week. He weighs 17 pounds, and is 26.75 inches long. Both put him in the 75th percentile. It's crazy to me as both Murphy and Harlie have NEVER been that high on the charts. He had 5 ear infections before he turned 5 months old, so he will get his tubes next Monday (March 16th). He's been going through a growth spurt for the last couple of weeks - waking up in the middle of the night to eat. Ugh. He hasn't done that since he was 2 months old. Hopefully he's almost done with that. And our night nurse has been out sick for the past several weeks, so between Cooper and Harlie's needs at night - we are TIRED. Hopefully things will get back to normal soon, so I can sleep again. I miss it. Terribly.

Well, that's enough of an update for tonight. We have a very early morning tomorrow, so I must get some rest while I can.

Take care,
Christy

3 comments:

Donna said...

I'm glad Harlie's pediatrician appointment went well...please update me tomorrow if you can on the heart cath...I'll be thinking of you. Fingers crossed all goes well - AND that you get some sleep tonight!

Hugs!
Donna

Ann said...

Sending good vibes and positive thoughts for Harlie's heath cath. It never gets easy to put our kids through procedures or surgeries. You've definitely got you hands way full these days ... hopefully, Cooper will get back on schedule with his sleeping. A good night's sleep (what's that??) makes life much more manageable.

Grandma said...

prayers and thoughts are with Harlie today that all goes well with her heart cath...I can't wait to see her and the rest of the crew...it is so amazing how fast they are growing up. Cooper is surely a big boy! wow..17 lbs and counting..your backs must br hurting from carrying him..once he gets his tubes in, maybe his slleping will get better too! call you tonight.