9.09.2008

Just Getting Adjusted

Sorry for the delay! I realize that we've been home since Friday, and I have been a big slacker...but...surprisingly, I have been slightly side tracked. ;) Grace has been an angel. Her meds are definitely overwhelming, however, I think I'm getting the hang of it. I organized everything as best as I could...Here are all of Grace's medications.

This is her Medication Schedule...Its in a nice check-list format so we can check them when they're done. I just love checklists!!!Here is how I've organized them for an entire day. She takes meds at 8-12-4-6-8 and midnight. 8a.m. is the worst because she has nine of them...and that's a lot. But, I got some awesome advice from Kaidence's mom, Shauntelle, and so I've labeled all my syringes and I pre-draw everything the day or night before, so its ready to go. So far, I have not been too overwhelmed with everything, and I haven't forgotten any of her doses. However, they want me to try and eventually memorize all the names, doses and times of her medications....one of her meds is called Sulfamethoxazole Trimethoprin...I can barely pronounce it, much less memorize it! But oh well. Maybe I'll surprise myself with all the repetition. :)
Aside from her medications, she is eating 80ml every three hours...or at least she's supposed to be...but she never has the desire to eat more than about 15..then she just smiles, and drools and gnaws on the bottle.
Don't you just love this face?!!! Its a "I'm not so sure about this lady here...she looks kinda crazy..." look! It's such a cute face!! And she's probably not too far off on thinking her mama is crazy!
Hospital genre aside, she is doing great. She truly is like a new little baby. She's still our little Grace, but we've taken her home, having a door opened to us. She is rarely fussy and grumpy, but rather, she is nearly always happy, smiling, cooing and giggling, (primarily at Dacia!), it is such a wonderful change from the old so called "Princess Scowls-alot". She really is an angel and I have LOVED every minute of having her home. We've read to her, played with her, watched movies together, sat on the patio, cooked together, snuggled, napped and anything else, and I think it's safe to say she's loved every minute maybe as much as we have. :)
So I came into my bedroom and Topher had fallen asleep reading Grace stories. Classic don't you think?? He reads HER stories to put HER to sleep, and instead he passes out. She must have gotten a kick out of it too...Then I came in 5 minutes later, and I found this...what a bunch a cuties.Thank you for all your continuous love, prayers and support. We know they have made all the difference. We can't imagine where we would be without Heavenly Father's hand so apparent in our lives. We acknowledge him in all our blessings and are so grateful he has been there for us to lean on, and sometimes to carry us, every step of the way. Thank you again for your prayers!We'll try to keep everyone as up to date as possible...I would post more pictures, but the one time I got my camera out, she got fussy! punk. ;)
Love you all!
Alysia, Topher and Grace

23 comments:

Amber said...

My goodness mama.....that's a lot of meds!!! Great system though...most excellent.
What an absolute miracle she is!!! I can't get over it.....so, so happy for you all!

Ashley, Jesse and Ryker Smith said...

Wow girly.. I feel bad for Grace. That's alot of meds. Way to stay organized. I'm sorry you are required to memorize them all. Good luck! It looks like she is doing really well. It is certainly so good to see. It makes me super happy.
I know you prob hear this alot, but it is certainly sincere and I mean it from the bottom of my heart... That if you need anything please please please let us know. I'd love to bring dinner over to you guys or something. Even if you need someone to have an adult conversation. I'm here.
I miss hanging out too. I hope we can soon. When Grace is all better. Right?
Love you all

Allison said...

She looks so great! I can only imagine how nice it is to have your little sweety home & in good spirits!...most importantly, with the transplant behind you!
So good to see!

aj said...

Woohoo, more pics, and even better - excellent news!! I'm SOOOO happy that Gracey has continued to improve day by day, and how amazing that she is more cheerful!

I would be too if I had a new heart that pumped my blood in the right direction, at the right speed, and all that stuff :)

More than once lately, I've put my ear against one of my daughters and just listened to the miracle that is called life - marked by the beautiful, even pacing of thump thump - thump thump.

I will never take that sound for granted.

Good heavens, I can't believe all those meds you need to keep up with!! But I'm glad you are not feeling overwhelmed - or more than you imagined you would be, I should say.

And I hope you aren't feeling too cooped up yet. I'm sure that time WILL come, though, and we'll all be there for you :)

Lots of love!!

Allie said...

wow so organized I dont know how you do it. If I have to take med. more then once a day i tell the doc. not to give it to me. I can only take it in the morning cause I get to busy and forget the rest. I am so happy you have found a way it works for you. Love the new pics. If you need more rubbermaid for any thing just call and tell me what it is for and i will look for somthing that will work. I heard you have done a great job with the rubbermaid Amy got you.

Love Aunt Allie

Loreli Caldwell said...

K I don't know your family at all, I totally came across your blog from someone elses, but I just wanted to tell you what a miracle your little girl is! She is adorable and I just love looking at your blog, I have been having my sisters and friends check it out because she is just so cute. Good luck with everything!

Anonymous said...

HI! THIS GRAMPA DON,
WE ALL FEEL SO VERY BLESSED BY OUR HEAVENLY FATHER THAT GRACIE'S LIFE HAS BEEN PRESERVED.

WE ALL LOVE HER SO VERY MUCH AND PRAY FOR HER AND HER PARENTS EVERY DAY. SHE IS A MIRACLE.
LOVE FROM G-PARENTS DON AND ANN.

princess jen said...

I'm so HAPPY I got to see you on Sunday!! And I can't wait to make an appointment to see sweet Gracey-lou. She is darling in all those pictures, just beautiful!

Likes Chocolate said...

This is wonderful news that you are home. Congratulations!

Shauntelle ~ said...

Hey, She looks great and I am so happy that all is going well at home. I am not sure if I told you or not but Kaidence's "Cyclosporin"(Gengraf) is the one drug that we no longer draw up before hand. We had problems getting her levels to stabalize so since the medication does bind to plastic we cut out all chances. We draw it up right before we give it to her and it is the ONLY med that she gets by mouth. It seemed to work. Even with us coating the feeding tube, her numbers seemed to be all over the place. Just a thought in case you ever run into the same problem. Other than that we still draw up everything the night before and it has worked great for our family. Keep in touch.

Shauntelle and Kaidence

Our Family said...

I was hoping the reason why we hadn't seen a post was because you were home! Good job with the meds and checklist. I love organization! You'll probably get them all memorized...and then the doctors will change them! I am so happy you are home and to see that Grace is doing so well. What a blessing!

Sara and Company said...

Yay for a happy Grace and a super organized family! Wowzers! That's insane. But I guess you wouldn't expect anything less considering all that she has and is going through. So happy you are home and that things are going as well as they can. Tell Karen to let Rachel play here lots so that she can come and help you. Love you all!

maynard said...

I am so glad you are home thanks for the wonderful pictures. She's so cute and has such great parents.

Carl & Karen said...

You're halfway through nursing school with the care you provide Grace! You and Topher do a great job--she's a lucky little girl. Thanx for the pix--can never have too many of those!

Karen

Canadaland said...

She looks so great, Buggie! And so do you : ) I just think it's amazing that she's home already. She couldn't be in better hands than the two of you to love and care for her. I'm so happy that she's happy, too. It's no fun having a fussy baby - I can't imagine having one all the time. She is an angel and a blessing.

Super Daysh said...

Yay! I love pictures! She looks so happy and I'm so glad that she seems to be doing so well. We love you guys and look forward to our next visit! :)

Katie said...

What awesome news to be home! Congrats and enjoy that cutie pie. She's just a doll!!! I'm incredibly inspired by her quick recovery and strong will :) What a little trooper!
Love,
Katie & Maddie

ann stewart said...

To the Anderson Family,
I am so grateful that your little Grace has a new heart and to hear how well she is doing and that she is at home, where she is supposed to be. I am so grateful to your donor family also and will pray for them as well as your family.
It is overwhelming to think that new little hearts have come our way.
Also, to hear that Daxton will be receiving his heart today brings so much joy and memories to me. My, my we are all so blessed. Love you guys, Grandma Ann (Alexander Stewart)

Gourley Fam said...

I am so excited you guys are home! And I am so excited that Daxton got his heart! What a time of miracles! We would love to meet you guys, maybe we could eventually go to dinner. But for now, know we are praying and thinking about you guys!
Heart hugs,
Emily

Anonymous said...

Bug! I'm so happy for and proud of you and your little fam!
Look at how wonderful you keep becoming! You have me in awe of the person you are, as always. Keep up the awesomeness!
-josh

Mike said...

Anita and I are thrilled at the success and progress thus far. We have enjoyed the blog and the ability it has to share in the wonderful hope. Thank you. I guess that this year Thanksgiving Day will have a special meaning for you and all those who have appealed to Heavenly Father so fervently. May God continue to bless us all.

Pam said...

I am so glad that you are home!! What a great place to be.

I love the picture of Topher asleep and Gracey sitting there smiling....tht happens ALOT at our house.

It never ceases to amaze me how quickly a man can fall asleep any place at any time. ;)

Me? Give me my bed with out any baby toes up my nose and I am happy!! :)

You guys look like you are doing great!!

((HUGS))

rodent said...

I say it every time, but your daughter is adorable and the pictures of her and Topher are priceless. Good luck remembering all of those meds! That is crazy! I hope all is well and I LOVE reading your blog and seeing the pictures. I'm totally addicted to that little girl of yours (and the two of you, of course).
Love you!
P.S. I need to figure out a way to see you more often 'cause you guys are just too much fun.