Tuesday, November 30, 2010

First time playing in the snow...

We took Gracelyn out to play in the snow a bit on Saturday. She wasn't sure what to think about it. First she stared at it for a bit... then she began to lift her fit up and down in it...then came the courage to touch it... she pulled some really funny faces as it stuck to her fingers...and then, like every thing else, she ate it.

Wednesday, November 24, 2010

SLEEP! Wonderful Sleep!

We decided that it was finally time to move Gracelyn to her own room. I'd been waiting to find a breathing mat when my doctor teased me saying we didn't need one because her problems weren't with her breathing. Ha Ha. Real funny. He made me feel better when he told us that the
recommended age to sleep them in their own room had been moved to nine months. Good. That meant we were right on schedule. :)

On the 12th Jeff lowered her crib and decided it was time. She never even used it on the top level. :) It was a miracle in my world. She slept SIX HOURS!! Between being off of her propranolol, being on her comfortable crib mattress instead of the piece of card board she had laid on in the pack and play, not having everyone else around to wake her up she managed to get some good sleep. It has only gotten better since then. She has slept up to 9.5 hours. At times she will wake up and my wonderful husband has taken charge. Since we have a freezer full of milk he is getting up an feeding her if she is hungry. Usually that is only at six in the morning. She has even been going to bed at 8:30 every night. Were does that leave me? SLEEPING in my bed. Finally! Unless you have had a child that doesn't sleep you can't understand, but it is huge to me. I feel like I can function again. I'm SO happy to be sleeping!

Monitor & ENT...

On November 2 we took Grace to Primary's to have a monitor placed on her. They took her off the medication that controls her tachycardia and wanted to monitor her after she had been off it for a week. Wow! What a chore that was. We spent the entire afternoon at the hospital. (Fortunately we had Grandma with us and we had stopped for a nice lunch at the Spaghetti Factory before we went. ) We had to leave the monitor on for 24 hours. It was kind of tricky we all those wires and her being so active, but we managed....almost. Right as we were at the time we could remove it she decided to help. We had been driving in the car and when we got out we found her with the electrodes in her mouth. Yum! I guess that meant we were done. We sent it back and haven't heard back from the doctors yet. We hope no news is good news. It has been WONDERFUL without having to give her propranolol.

While we were at the Hospital we also met with her ENT. Her ears have been awful, but the doctor looked at them and said they were great. I loved hearing that, but wanted an explanation for her lack of sleep. The doctor referred us to the sleep lab and wanted me to make an appointment immediately. I didn't feel like that was the answer and left without making an appointment.

We are so happy and blessed that all continues to go well.

-Side note about Mr. C. He was so excited to be going to the eating hospital (he calls it that because whenever sister is admitted Grandpa & Grandma bring him down to see us every night and have dinner with us). He kept telling me how happy he was to go through the circle doors, and watch spider man, and see Mario and Spiderman, and eat and... Finally I stopped him and said I don't think your sister would feel the same. I explained that is where they fix her heart and have to cut her chest open. He followed that with, "Ya, but they don't irritate ME."

Thursday, November 11, 2010

Cardiology Appointment

Last Tuesday, November 2, Gracelyn went in for a check up. This was one of the most positive appointments we have had over the last year. Not to mention quick. We were back home within four hours. They checked her O2 saturation and at one point she hit 91%. That wasn't what we were expecting. I don't know why because she has been beautiful and pink! Her x-rays looked great as well! Her doctor was very pleased with how she is doing. She is still only in the 5% on weight, but she has consistently stayed there. She may just be a little girl. The cardiologist loved her chubby, rosy cheeks. ME TOO! We also took another huge step. Gracelyn was removed from her Propranolol (beta-blocker). It is the medication that has controlled us over the 11 months. We had to give it to her every 7 hours. The Propranolol was used to control her tachycardia. Originally when they put her on it they hoped that it was only caused by surgery and that it would be gone in a year. They are hoping it is now gone. She was taken off of it for a week and today we go to Primary's to have a monitor hooked to her to see how she is doing without it over the next little bit. We pray all is well. It has been nerve racking with her not on it, but wonderful!

We are so blessed to have her doing so well. It was wonderful at this appointment to have no talk of surgery. We know it is in the future, how far we don't know, but for now we will go on with "normal" life. She doesn't go back until MARCH! At that time they will do an echo on her.