Tuesday, April 15, 2008

Hit the ground running...

Yup, thats basically what we have done since arriving in Minneapolis on Saturday evening. While we expected to have Sunday to relax and settle in, it turned out that we needed to go into the clinic so that Gracie could have her central line site looked at. Over the past few days it has become increasingly more irritating to her so she has been scratching and pulling at it all the time. It looks like she might have some sort of a fungal infection at the site and it seems that the meds are working because its looking better and doesn't seem as itchy. Yay! And in between dressing changes we've been given the ok to give Gracie a real bath! WOOOOHOOOO! Her first in 2 months. I am so excited for her. We'll probably do that in an hour or so.

Anyway, lets do a rundown report of our appointments from yesterday.

1. Dr. Orchard - just a quick physical and chat with him. He said she looks fantastic and he doesn't expect any delays when it comes to admission and transplant so that was good news. If all continues to go well, Gracie will be admitted to the BMT unit next Tuesday- the 22nd. I aso should mention that Gracie spent a lot of time flirting with Dr. Orchard which he enjoyed immensely.

2. Pumonary- Just a quick listen and chat with Dr. Philips who said that Gracie looks and sounds great and there's no reason not to go ahead with transplant.

3. Echo/Cardiology - Gracie had another echo done and then we met with Dr. Braunlin to go over the results. It turns out that the ERT has done wonders for Gracie's heart issues. Her septal walls have shrunken to normal size and her aortic and mitral valves have gotten smaller as well. Her leakage from her mitral valve has also diminished a little, which is a surprise but we're certainly not complaining. :) Dr. Braunlin was really really happy to see such huge improvements and she gave us a green light for transplant.

4. Neurology - Dr. Charnas was very impressed with Gracie and in fact, he asked if she was the same baby that he had seen 2 months ago! :) He feels that she is doing well developmentally and that the ERT has definately helped her make many vast improvements neurologically.

So, a clean sweep yesterday... straight A's as far as I'm concerned.

Today we just had one consult - NeuroPsychology with Dr. Kendra Bjoraker. Dr. Kendra was also amazed to see Gracie's progress and all of the ways she's changed. She did a little bit of testing and we'll get the official scores tomorrow, but Dr. Kendra said that in a mere 2 months, Gracie has improved her scores a LOT. She kept saying over and over how amazing our Gracie was doing. :) :) :) Sounds like an A+ from Dr. Kendra! Woot!

After NeuroPsych we had an EKG and an Xray done. Daddy says that the EKG was beautiful and we should know about the Xray tomorrow when we meet with Teresa, the Nurse Coordinator.

In other news, we met 2 other Hurler babies yesterday! We met Chance, a 1 year old who I have written about before, and Rylie, a 19 month old redheaded cutie who has been waiting for transpant for 5 weeks while her parents and the folks here fight with their insurance company. Please keep Rylie and her parents in your prayers. I can't imagine what they are going through with that situation. :( Chance looks to be doing very well. He's been released back to RMH and is coming in for checkups every few days. Go Chance! I'm looking forward to getting over the RMH and getting to know these families better. Hopefully it won't be too much longer.

Ok, so Gracie and I are going to take a rest and watch some Mr. Rogers and then we'll have a bath. More later.


Mr. Noodles Panini said...

Hi Gracie! congrats on the great consults and improvements! I'll see you tomorrow evening!

Ray Ray said...

Goodness. Gracie, congratulations on your A + day!

mom said...

Gracie, I knew you would knock their socks off...keep up the good work and enjoy that bath.

bri said...

sounds like everything is right on track! I have such a good feeling about all of this and I am so proud to know you Sarah, you are doing the BEST things for Gracie and I thank God she was given to you and Jimmy. I hope everything continues to go smoothly for her and I will pray that those demons at the insurance company grow a conscience. Unbelievable!

mykidsmomx4 said...

YAY GRACIE! I could tell she was a superstar the moment I 'met' her.

Does Rylie have a web page? I have had many insurance issues and would love to be of assistance if at all possible. Either way, I will keep them in out prayers (and you too!)!

Glad your week is going well so far.

Gracie's Mom said...

Thanks everyone. Gracie really loved her bath. She definately earned it. :)

Kindall, I have no idea if Rylie has a site, but if I see them tomorrow, I'll get you a way to contact them.
Hope to see you here soon too!

Kelsey said...

That is great about her A+ Day! Glad she got a real bath, and enjoyed it as well. I am so happy that things are falling into place.

I will keep the other two kiddos in my thoughts and prayers right along with Gracie.

Testdriver said...

Gracie! Where are you??

I can't smell you anymore! Must have been the bath.

You go, little mama. I see you're gearing up to kick some GAG's to the curb.

There goes Gracie, takin' out the trash!


kg4eoh said...

Glad to see the good results and the good news so far. Go Gracie!

Patty (BBB)