Wednesday, June 23, 2010

Cardiology appointmen

Today we had a cardiology appointment and it was an appointment like no other. You know the feeling of pure joy when you are given great news? Well that is how today's appointment went!!

Yesterday I got a phone call from the cardiology office asking us to come in early for an echo. I was nervous because Gracie has never had a non-sedated echo before (other than the times that she was so sick that she didn't have the energy to move). But to my amazement she did great! She hated that she had to lay flat and couldn't control the probe herself, but found amusement licking the probe and the technician's fingers (glad she used Avagard before starting).

Dr. Su couldn't believe how well Gracie looked and how much more energy and personality she has now as opposed to just a couple of months ago. He was pleased with her weight gain---22lbs 4oz and all of her new skills which she wasn't shy about showing off. But the best news comes with her echo---it looked beautiful!!!

Grace has always had a moderately leaky valve and today there was barely any leakage!! Gracie's heart has a more efficient squeeze than ever before. Dr. Su said not to change anything because we obviously have found a happy ground for Gracie and she is finally thriving. It was so wonderful to see how excited and pleased he was with Gracie.

We are hopeful that when the time comes for the Fontan that her pressures will have come down and she will be a candidate for the surgery. But in the meantime we will just keep plugging along and for the first time we don't have to go back for 6 months!!

Tuesday, June 22, 2010

New skill

Look what Gracie can do!! Tonight while I was getting her dressed after her bath she sat up all by herself! She still can't do it while on the floor the "proper" way, but we're making progress.



video

Thursday, June 17, 2010

Strawberry Days

This week is Strawberry Days for our little city we live in--complete with rodeo, carnival, and a parade this Saturday, so we decided to take the girls to the carnival tonight. It's ridiculous how expensive it is to ride a ride so we didn't stay too long or let the girls ride more than a couple rides, but they had fun! I love how good Morgan was when we told her that there were no more tickets and it was time to go home, she is such a sweetie.


I had to talk the carnie into letting Gracie ride the cars with Morgan, against Jason's opinion, but I'm sure glad I did--Gracie loved it!!





And of course we couldn't leave without riding the 'merry goey around" as Morgan says it.
Morgan rode this flying ride without Gracie--didn't feel good about trying her on this one.

Thursday, June 10, 2010

Gracie's update





Gracie loves to ham it up for the camera!!

I've had every intention of posting an update of Gracie sooner, but the last week has been crazy. I have been sick and I have had my share of days where I have felt way too overwhelmed with everything that instead of posting a negative post, I thought I would just wait till my attitude and perception of things changed.

Now on to little Miss Gracie. I can't believe that Gracie will be 2 years old in just under a month!! It is amazing to me to see how far she has come. Today in motor skills class, she actually let me hold her under her arms and help her walk across the room---a first!!
Gracie is still working on trying to get into sitting on her own, it is just so hard for her. I'm convinced that it is because of her sternal suspension and having her pectoral muscles cut to stretch out her chest enough to close her up after that first open heart surgery--though no doctor seems to agree with me, o'well, they don't know the lasting affects of what they always choose to do, right? (Are there any other heart kiddos who have struggled with getting into sitting for so long?)

Gracie still loves to stand with assistance and will do so for about 15 minutes before she gets tired and needs to sit down. She hates to kneel and pull to stand and absolutely destests working on the stairs, she just puts her head down and pouts, then she fights as we require her to work...it is funny and sad all at once. Poor girl, I wish she didn't have to struggle so much to do what seems so easy for so many kiddos her age.

We're still doing the blended diet (for those of you who don't know what that is, instead of formula I blend real fruits, veggies, grains, and meats into a 'milkshake' then put it in her g-tube) and for the most part Gracie is tolerating it well. Though we are dealing with her puking a lot more, to me it is worth it. Most of the time the reason for the puking episode, is because I pushed the food too fast or I didn't distract her enough while I pushed it. Gracie is gaining weight like a champ, last week she weighed in at 21lbs 15 1/2 oz!!! It is amazing to see how great Gracie is responding to this diet.
Though Gracie still isn't talking much, she is mimicking us so much more and will repeat almost everything we ask her to say. She has picked up so many signs, her favorite is all done. Today she was sitting in her stroller crying, signing all done...it was so cute, everyone around her thought she was waving...nope, she was asking for help, she wanted someone to get her out. Gracie now recognizes her nose, mouth, eyes, and ears and will point to them most of the time. She loves to go through all the farm animals and make their sounds, though the only ones she knows without help are cow and duck.

Gracie has a couple of bad habits that drive us nuts. She LOVES to gag herself and thinks it is hilarious---I wouldn't worry too much about it, but each time she gags herself, her heart rate slows and if she does it too many times in a row...well you all know what can happen. Gracie has also become rather sensitive to other babies and their cries, EVERY time a baby cries she starts crying crocodile tears and won't stop. It makes the days that I watch my 7 month old twin niece and nephew extremely hard...I think she senses that there is change in the future and hence the obnoxious behavior.

Well I guess that is quite an update that perhaps isn't very cohesive...but at least it is done.

Thursday, June 3, 2010

Drawings of a toddler

Morgan has started drawing distinguishable pictures on her doodle board, so in an attempt to be able to show them to her when she is older, I wanted to post them to the blog. I have a lot to say about Gracie and the last little while, but that will have to wait till another day....

Can you tell what this next drawing is? Gracie could!!

Did you guess Mickey Mouse?