Birthday Party

I cannot believe that my little baby, will be 3 years old on Sunday!! Oh, how fast the time goes by! We celebrated Morgan's birthday today with a big family party at our home. Morgan woke up so excited, especially because her cousin Cade flew in today and was going to be at her party.


We had Morgan's favorite meal--chicken nuggets (homemade) and fries, along with a yummy fruit salad, steamed green beans, and baby carrots. Then we opened up gifts and sang, and within minutes the birthday cake I literally slaved over for three hours was devoured. Morgan wanted a chocolate Minnie Mouse cake and if you don't mind, I'm going to toot my own horn, the cake came out wonderfully--especially for not having a mold or anything!!!













I love this face!

I'll post more about my soon to be three year old and how much I love her and all her wonderful traits and cuteness, but for now here's some pictures from the day.

Trying to get a picture with all of the cousins.

Is it bedtime yet?

15 Months

I can't believe that Gracie is already 15 months old, she seems so much younger than that! I am so grateful for all of the blessings and miracles that we have seen in the last 15 months of Gracie's life---its amazing how much Grace has gone through and overcome. I hope and pray that she will continue to be strong and determined as she continues through her journey here.

Anyways we went in for Grace's 15 month check-up, I finally switched her over to a new doctor, a pediatrician as opposed to our family doctor--this may sound funny but it was extremely hard to make the switch. I just love our family doctor, Shelly Savage, and how she has been with us from the beginning, other than Jason and a few family members, it was her 'shoulder' that I cried on upon finding out about Gracie's condition in utero and dealing with the fears and anxieties for the 4 remaining months of my pregnancy. I felt it was time to switch Gracie to a pediatrician because cardiology isn't following her as closely anymore.

We love the new doctor, he actually was Jason's when he was a baby and child. He spent an hour with us today learning about Grace and all of her surgeries, complications, and just plain uniqueness.

Gracie is doing well, has made some progress in weight gain, but nothing to write home about. Grace now weights 15 lbs. 8 oz., and is almost 29 inches long. So we have finally scheduled a G-tube consult for next month--we're hoping by then we will have her off more of her diuretics, though that isn't going too well right now.

Overall, Grace is doing amazingly well. She still hates sitting up, but can do it for about 5 minutes on her own. I think it pulls on her scare tissue and muscles as she stabilizes her core, she just cries in discomfort and pain until she lays back.

I think that is all now, I feel like I am just rambling now---sorry for an extremely random post.

No tubes...for a bit

We've been working with Gracie even more on oral eating and really it isn't going anywhere. Today I needed to change her NG, so I figured we would try feeding her without her NG tube to see if that would help. No change!


Gracie loves to put things in her mouth, but when it comes to food, she very rarely will allow food to pass the middle of her tongue before she lets the food pool out of her mouth. So in addition to different textures, we are trying different tastes too. Yesterday Grace loved sucking on a piece of roast beef, and last week she couldn't get enough of the olive oil and balsamic vinegar (like at Macaroni Grill) on a piece of bread. One day it will come...even if it is when she if 16 :)

(Gracie's way to wear her oxygen. Do you think it still does her any good? She is constantly doing this. )

In addition to the NG tube experiment, I took Gracie's oxygen off, just to watch her sats...it took about 45 minutes before she dropped below 70. But boy did we enjoy those 45 minutes of tube free freedom. I don't know who was happier---Gracie or Morgan. Grace rolled all over the house, she rolled into corners and places that she never has been able to get to. All the time, Morgan danced and sang, "Yeahhhhhhhhh, Gracie has no tubes! Yeahhhhhhhh, Gracie has no tubes! No more tubes for Gracie."






It was so hard to put the oxygen and NG tube back, Gracie just looked at me and started to pout. Oh how I dream of the day that Gracie could live off of oxygen, even if it is only for a couple of hours a day.

For those of you wondering, Morgan did great with her surgery. She didn't complain much of pain, but was very whiny and not herself for several days. It was so sad, all she remembered was that "they put the mask on her and then her teeth ripped."

Another Surgery

Today we are at same day surgery, but it isn't for my sweet little Gracie. Morgan is having some major dental surgery done today and oh how it pulls at my heart strings to send her off. I think in a way it is a little harder with her---she is older, more aware, and can actually verbalize her fears and anxiety.

Morgan has very poor enamel on her teeth, so she is having four crowns and a root canal---more work than I have ever had done on my teeth.

She was so brave as they wheeled her away in the wagon. Morgan gave me a big kiss, held on to her puppy, Yuppie and off she went without a tear, though lots of apprehension in her face.

She'll be in a lot of pain when she comes out....poor thing.

Pictures

It has been a while since I posted pictures, get ready!

Inside playing.

Outside fun!

Those of you who know Gracie, know that her swing is literally hers and our saving grace---unfortunately I don't think we will be using it much longer. She hangs out of it, this picture she is awake but sometimes she sleeps right through it.

Cousin fun

Look who is sitting up!! Gracie is doing great working on sitting, today she sat up for 5 minutes at a time. She has an ear infection and is still adjusting to the changes in diuretics, so she isn't as happy as normal.

Sisterly love

what's going on with Grace?

I know I haven't posted much recently...I have had a hard time justifying sharing my frustrations and disappointments (that I have been feeling concerning Grace and her development) enough to write while heart friends are losing their earthly battles, receiving terrible news, and just plain struggling more than what seems fair. It is so hard to see so many children struggle and go through more than what most adults go through in their entire lives. These little children truly are amazing and very special spirits that teach us oh so much.

I recently had a great conversation with one of Gracie's physical therapists that put things into perspective for me. We decided that Grace is more like a six month old developmentally, then she is a 14 month old. Really, Grace was so sick until after her second surgery in April that she didn't have energy or strength to focus on much more than healing her body.

We had an appointment with cardiology yesterday and Grace is doing relatively well---we just need to get her off of some of her diuretics, especially since they are keeping her from even being refereed to GI about placing a G-tube. So what we are planning on doing is weaning her off of her afternoon dose of bumex, if by the end of the week she responds with increase oxygen needs, coughing, etc. we will get her into the cath lab soon to coil off some more collagulants (enlarged veins and arteries). But if she responds well, then we will continue to wean off of her other diuretics.

Gracie is now 30 inches long and 15lbs, so she is still her long skinny self. Dr. Jou wants me to try increasing her calorie content again from 24 kcal, to 27 kcal. I honestly don't think she will tolerate it but who knows. I'm anxious to get a g-tube placed, I've heard that kiddos just gain more than with the NG tube.

Gracie is rolling all over the living room these days. Its fun to see her actually try to go and get something that she wants. And if she can't reach it, she will let us know. Grace has started vocalizing so much more now, she just says ahhhhhhhhhh, dahhhhhhhhh, ahhhhhhhh, dahhhhh over and over again. I love it! We are working so hard on mastering sitting, Grace hates it, but is doing quite well. So far she has sat up for two minutes straight before tumbling over.

Prayers needed

About an hour ago I read a devastating update on a dear sweet family---The Stricklands. Their little miracle Mason is in heart failure and just found out that he is not a candidate for heart transplant. I went left my computer and attempted to do some household chores just to find myself literally sick to my stomach for this sweet family and their little one.

Please pray for them to feel comfort, peace and direction. Please pray that they will enjoy every day they have left with Mason and that they will be strengthened more than ever before.