Thursday, January 21, 2010

Mostly Just Pictures




Morgan on her first day in Primary.


Things have been crazy for us lately, but nothing too noteworthy. We tried Gracie on Viagra again and she had another negative reaction, so we are still discussing with her cardiologist what the new plan may be.



Gracie has been putting more and more weight in her legs this week and will even stand with assistance for up to five minutes!! Today I got the idea to stand her on the bathroom counter in front of the mirror, and she absolutely loved it. She thought it was so fun to give herself kisses and raspberries. I couldn't resist taking pictures...there not the best, but I think they are adorable.

Thursday, January 7, 2010

Happy 18 months Gracie!!!






Today was Gracie's 18 month birthday. I can't believe she is 18 months old, this is such a big and miraculous milestone for her. Though in many ways she is still much like an infant, she is very much like a toddler in other ways.
Grace is truly my inspiration and hope for the future. I hope to be as strong and determined as she is in all that I do. I love you baby!!
The following is just a list of things Gracie is doing now that I want to remember.
Physically
--rolls around nonstop, tangling herself in her oxygen
--she's an inch worm, while on her belly she stretches out and uses her feet to push herself the extra 5 inches she needs to get the book or toy she wants
--when in her exersaucer or walker, she will stand straight up and put weight in her legs, she even lets us help her stand up straight.
--she claps all the time, especially when she has done something that she knows is an accomplishment
--while in the tub she thinks it is hilarious to splash the water with her feet. Gracie literally gets us so wet, you'd think we got into the tub.
Verbally
--Gracie says dada, nana, mama
--when we sing Old McDonald Gracie quacks through the entire song
--when she can't get to what she wants, she screams until she either finally reaches the desired object or I give in and give it to her
--while eating, Gracie has this guttural sound that she likes to do
--her laugh is still quite soft and is a rarity to hear
--she squeals in delight, when she gets to watch Mickey Mouse Clubhouse
Cognitively
--Gracie understands when we tell her to put her oxygen back in her nose. And will even get a mischievous look in her eyes and proceed to pull it out again
--when asked if she wants to watch Mickey she shakes her head yes
--she knows how to maneuver her body to get over obstacles in her way
--she now talks to baby dolls
Favorites
--Mickey Mouse Clubhouse
--Singing
--playing the dropping game
--playing peek-a-boo
--books
--mama
--being rocked to sleep
--playing with your mouth while you rock her
--her swing
--riding in shopping carts
--being outside
--sucking on purple onions, broccoli, and graham crackers

Stats
--17 lbs 1 oz
--30 inches long
--size 3 shoe
--78-81 sats
Medically
--heart is doing ok, less decreased function
--no scoliosis
--may need eye surgery, we're playing the waiting game
--arterial pressures in her lungs are borderline high, we're working on lowering them
--currently on 7 meds, plus ear drops for an ear infection
--1/2 liter of oxygen continuously

Sunday, January 3, 2010

Fun in the Snow

Since Wednesday Gracie has been sick, the problem is I don't know if she really is sick or is reacting to her new medication. After two months, insurance finally agreed to pay for Gracie's Viagra--because of how it is marketed for ED, those that need it for the reason why it was developed have to jump through so many hoops, providing complete medical histories to prove it is a necessity. Anyways, the way Gracie is behaving and the symptoms she has remind me of how she was when she came home from the hospital for the first time. She is throwing up after every feed, has diarrhea, and has a terrible wet cough. Her eyelids are red and swollen, she isn't sleeping, and she is so pale. Luckily though her sats haven't changed much, she is on more oxygen throughout the day but not much more.


I called both the pediatrician and cardiology yesterday, and was told the normal, we don't know if these are symptoms of the drug, they haven't heard of them before, but it's not impossible that they aren't. We were advised to ride it out a bit and see how she is doing mid-week. In the meantime we are giving her some over the counter drugs to help mange her symptoms so we all can sleep.


Jason stayed home with Gracie New Year's day so that I could take Morgan out and play in the snow. We went sledding and even built Morgan's first real snowman. We had so much fun, but we did wish that Caden, Morgan's cousin was still in town to play with us. We know we would have had even more fun.

video

I got several trips down the hill on tape, but I think this one is my favorite. I love Morgan's laugh.

This is Sam the Snowman. Morgan called grandma to see if it was ok for him to stay in her front yard and even called everyday to see how Sam was doing. Sadly Sam was knocked over by someone or something last night and is no more.