Friday, November 28, 2008

Dear beloved friends and family,

Yesterday, as we celebrated all of the blessings that we have to be thankful for, our transplant friend Kamran in Minnesota went home to God after a very long and tough fight with Graft vs. Host Disease and other complications from his unsuccessful transplant.

Kamran was such a sweet and loving little boy who welcomed us on the the transplant unit as he was being released back to the RMH, and later, brought many smiles to our faces once we returned to the RMH as well. One of my favorite moments with Kamran was during one of the Thursday night Bingo games and Kamran came over to our table to play with Gracie and her new laptop toy. :) She loved having him close by and gave him many flirty smiles behind her mask.

I ask God to envelop his parents, Kelli and Bahram in his comforting arms during this difficult time. And I know that despite the endless grief that those who have lost a child must suffer, they will be able to always celebrate Thanksgiving in its purest and most precious form. They will always be so thankful for the beautiful moments they shared with their amazing son.

I ask you all to please pray for Kamran's family during this difficult time.

We will never forget you, sweet boy. We are so thankful to have been able to know you and be touched by your life and love.

Thursday, November 20, 2008

So far so good- nothing to report...

Gracie continues to do well, and that leaves me with not much to report. We're slowly tapering her anti-rejection med and we'll go back to Nemours to see Dr. Joyce in another week for another check-up. We'll also be getting Gracie's eyes examined again. She hasn't had an eye exam since February... before she started ERT. I am interested to see what the doc says about her cloudy corneas. We also need to visit the audiologist again to see if Gracie can finally pass a hearing test. Thats next on the list. We need to get all of these exams done so that our therapists (Speech, PT and OT) can get a good idea of any hurdles we need to overcome.

Thats pretty much all I've got to report but I do have 2 pics to share from the BMT 40th Anniversary Celebration. They're pretty cute. Enjoy.

Friday, November 14, 2008

The results are in...

Hi all. We're back home in sunny Florida. We had a great check-up with our Jacksonville doctor, Dr. Joyce, and we have wonderful news to report. Gracie's engraftment is still at 100%!!! This is an important milestone because the risk of rejection reduces drastically at this point. We start to taper off her anti-rejection meds tonight. They expect this to take a month to a month and a half. We're also hoping Gracie gets to have her central line removed by the end of the taper.

Monday, November 10, 2008

Gracie steals the show!

As promised, here is the clip from the Minneapolis Fox news station where Gracie and her Dad and mouthpiece Mom had their cameo appearance alongside Kenechi Udeze, a Minnesota Vikings defensive end and fellow transplant recipient at the Celebration and Reunion.

If you keep watching, you can see Gracie flirting with one of our beloved doctors, Dr. Orchard, who heads up the Pediatric Inherited Metabolic Disorder division of the Blood and Marrow Transplant Program. He's a cool guy and Gracie always has lots of smiles for him.

Video Clip: Udeze's Mission

Read the news story: Kenechi Udeze Attends Benefit to Crusade for Bone Marrow, Blood Donors


Sunday, November 9, 2008

Busy Busy Busy...

Well, our trip here to Minneapolis has been a busy one, and we really have enjoyed being here and seeing so many people who are so special to us. We've also had fun visiting a few of our special Minneapolis restaurants and favorite stores, and Gracie has charmed and smiled her way through every moment of it.

So for the important news...
Gracie's appointments on Thursday went very well. Everyone we have seen are just amazed by how wonderful she looks, how happy she is, and how much she has improved. Gracie's transplant doctor, Dr. Tolar told us that he is usually hesitant to say it but that Gracie is a true example of a successful transplant. My heart soared at that statement, and I could not help but to give him a huge hug and thank him incessantly. We discussed the next steps that Gracie will take, and provided her engraftment is still good and stable (we'll get that news in about a week or so) we will begin to start tapering her CSA (anti-rejection med) over the next 6 weeks or so, and we will also be able to have her central line removed in the next month as well. We are so excited!!!!
Gracie also had an appointment with her neuropsychologist, Dr. Bjoraker. This was another great appointment! We went through a few hours of assessment testing and it turns out that Gracie has made some huge strides in development since transplant as well. She has almost overcome the setbacks she suffered due to the transplant and she never ceases to try something new. We are just so proud of her and Dr. Bjoraker was really impressed with her progress.
We also sneaked up to Unit 5D to surprise our special friends who took such good care of us when we were inpatient. We were so happy to see 2 of our most special nurses, Carolyn and Jenny, and Gracie was happy to see them too! She gave Jenny some big snuggles and lots of smiles all around to everyone. We chatted for a few and caught them up on all of our great news before we had to let them get back to work. From the unit, we headed to the rehab center to visit with our friend and awesome speech therapist Mary. Gracie gave her a big hug and more snuggles and we shared with her how well Gracie is eating and babbling. Gracie even said a few "dada's" for her. Mary was so happy to see her Gracie and she was also impressed with all that Gracie is up to these days.
The next day we went back to rehab to visit with Susan, our physical therapist, and Gracie had no trouble showing off all of her motor skills- crawling, cruising, climbing, playing, pulling up... everything you can think of. Susan was also really impressed with how far Gracie has come in just a few short months.

Saturday was the day of the Blood and Marrow Transplant Program's 40th anniversary celebration and reunion. What a wonderful celebration!!!! We are so glad we stayed for it and we had so much fun. Gracie was great and I think she was the youngest transplant recipient present. She met lots of people, yound and old, just like her and Jimmy and I were both touched and inspired by the presence of so many survivors. We heard from the doctors who started the BMT program here at the U of Mn, and even from a Minnesota Vikings Football player who also went through a transplant here this summer... just like Gracie.
And wouldn't you know it, Gracie the celebrity and her mom and dad were on the local news here in Minneapolis last night! We hope to have a link to add here to the blog so you all can see, otherwise, we'll try to post the video here in the next few days.

We have lots of pictures to post as well so we will get to that asap. We'll be flying back home tomorrow and while we have had so much fun back in Minneapolis, we are looking forward to the many comforts of home.

Much love.

Thursday, November 6, 2008

Safe and sound on our old stomping grounds...

We're back in Minneapolis and in the RMH. We met up with our friends Rylie, Jade and Lyle, and we also got to spend a little time with our friend Kam's mom, Kelli. We really enjoyed all the time we were able to spend catching up. There are not many people we know still here... its funny to be in such a familiar place with so many unfamiliar faces. I keep looking for all of my fellow transplant moms and Jimmy keeps trying to go to our old room. :) Too funny.

We have several appointments tomorrow and we're really looking forward to seeing some of our favorite docs and nurses in clinic tomorrow.

Gracie has been doing great and she's having a blast. She was following her big girl friend Rylie all over the place and she is totally enamored with her. We got some great pics that we;ll try to post tomorrow.

Sweet dreams from chilly MN.

Monday, November 3, 2008

Up late- packing and posting...

Well, I have been slowly packing for our return to Minnesota on Tuesday. It is amazingly hard to pack for a week long trip when the weather is being wonky. Apparently it was 70 in Minneapolis today, but later this week a 30% chance of snow is predicted. According to a fellow transplant family, it snowed last week too. Ummm, hello? We're from Florida- its hot as Hades here for 9 months of the year, maybe we get a few weeks of "nice" weather, and bam!- its freezing. But 70 one day and snowing 3 days later is something I have no idea how to prepare for. Not to mention the fact that you have to pay to check all of your bags now. This is one of those moments where I just have to laugh at my frustrations.

On the upside, we are really excited to be heading back for this milestone checkup. We can't wait to see our beloved doctors and nurses again, not to mention the staff and friends at the RMH. And especially, our friend Rylie who will be having her 6 month checkup too! Yay Rylie!

Our schedule started out as 3 days of doctoring, but we were notified last week that Gracie doesn't need an MRI, so therefore she will not be sedated and will not have a lumbar puncture. Its surprising, but we're glad that she won't need to go through that on this particular trip. However, that means that Gracie's appointments are being consolidated into just one day. We booked our trip for 6 days. Ummm. Oops. :) I guess we're just going to have a little mini-vacation in Minneapolis then. Again, a laughable situation, but we'll roll with the punches.

Lots of love and long distance snuggles to Uncle Mack who said goodbye to his gall bladder on Friday. Hope you're feeling better, Mackie. Gracie loves you and told me to tell you to get some rest and drink plenty of fluids. :)