Bad Mommy, Good News

So, the bad mommy has been a bad blogger. A week ago I promised pictures and an update. I'm sorry its been so long. :(

Everyone has left now, even Noni, and we expect Uncle Mack to come for a visit tomorrow. So Gracie and I are on our own for today. She's napping now, so I thought I'd come fulfill my overdue promise.

Luckily, I have great news to share from our clinic visit yesterday. Firstly, her counts are still great... WBC 7.5 and Neutrophils 5.3 ... all the other numbers are great as well.
Secondly, they tested her engraftment last week (although they forgot to tell me about it) so I was pleasantly surprised to learn that Gracie is still 100% engrafted with her donor's cells.
Thirdly, I finally learned that Gracie's new cells are producing alpha-L iduronidase- our missing enzyme- and plenty of it, so regarding the transplant for its original purpose, we can say for sure that it worked. WOOOOHOOOOO!!!!! Now our concerns are of course to stay engrafted, stay healthy, start eating, and combat GVHD (Graft-Versus-Host Disease).

Gracie's birthday was wonderful, and thank you all for the wonderful cards, gifts, and well-wishes we received. I consider myself so blessed to have such a wonderful support system and we definitely feel so loved even though we're far away.

Ok, so how about some pictures.... I hope these are worth the wait. :)

Gracie and Mommy at the fireworks


Gracie's birthday cake... actually it was Garcie's cake.


Gracie and Daddy snuggling


And 2 from Gracie's birthday dinner at Applebees. What a big girl!

Yikes...

Has it been so long since I've posted??? Oops... sorry to our loyal fans for the long delay in updating. So, since last week, we have been very very busy. We still have all of our family here, although Aunt Hyster and her crew will be leaving us tomorrow.

We have had a wonderful week of celebration with our wonderful family. Once everyone got here, we planned a cookout in the courtyard here with another family that we have become close to. Nuvy made a special friend with their little girl, and those 2 have played the day away for a few days... and then parted with tears when Nuvy ad to go back to the hotel for the night.

We had a birthday celebration for Gracie and all of the rest of us who have late June/early July birthdays and we had a yummy cake from Ben and Jerry's.... mmmmmm. Our new friends here gave Gracie some wonderful gifts that she has been playing with non-stop... along with the gifts that Mema brought with her from Jimmy's family.

Mommy has been indulging in some much needed sleep while Daddy is here to pick up the slack. Mommy even had an outing with the Kelly crew yesterday to the Mall of America while Daddy and Mema stayed at the RMH with Miss Gracie, who sadly is not allowed to go to the MOA for a while. Uncle Mack, Mommy and Hyster all rode on the Spongebob Rollercoaster in the amusement park and then we all took turns riding with Nuvy on the kiddie rides. Lucky me, I got to ride with her on the Blue's Clues ride.

Today we had to head back to clinic for another round of blood draws. Her counts are holding steady at 7.8 WBC, 5.5 Neutrophils, and her platelets jumped again to 203!!!! Very exciting. We have an appointment with the doctor again on Friday to recap on how we've been doing so far. I hope for another glowing report. :)

Ok, so I owe lots of pictures since it took me so long to post, so I will definately work on it and you can see how well our girl is doing.

xoxox.

Day +52... Cleaning up for company...

Here we are, hanging out in the RMH, anxiously awaiting Munts' arrival. For those of you who don't know, Munts is my dad- Gracie's Grandpa. He will be the first of the family to arrive. This week we'll be having a LOT of visitors. First Munts, then Tuesday Uncle Mack and Aunt Hyster with Nuvy and Van will be here. Then Wednesday marks Daddy's return to Minneapolis and he'll be bringing Mema along too! Uncle Kent and Chris will be the last to arrive this weekend so that we can all celebrate Gracie's big 1st birthday! Gracie and I are so excited to host so many of our loved ones here in Minneapolis.

Tomorrow will be our last ERT, and hopefully we'll soon find out if Gracie's new cells are making the enzyme she's been missing... the whole point of having the transplant in the first place. I'm not sure when I'll find that out, but I'm going to ask about it during our long clinic visit tomorrow.

So far Gracie has continued to do very well. It turns out that she has officially weaned me from breastfeeding, but Mommy has been pumping to keep up her supply and Gracie has been having her breastmilk in a little glass. What a silly goose! She's not real interested in drinking from a bottle again or even a sippy cup yet, but I am hoping she'll be more open to the idea once her nausea subsides. Either way, I'm just glad she's taking it at all. The doctors all are encouraging me to give her breastmilk as soon as possible so that she can get all of the nutrition and antibodies it contains while her new immune system is cranking up. So far, so good. Gracie is our little champion and she is being very good at pleasing all of her doctors. Yay for my little brown-noser. :)

Gracie also returned to the realm of taking real baths this week... here's a pic or 2 of the Peanut in full splash mode. :) Enjoy.

The Best Birthday Gift

It's a big day. I think today is Day +50. Whoa. It's also Sarah's 30th birthday. I can't believe my baby sister is 30. How did that happen?!?!

HAPPY BIRTHDAY!

Gracie met with Dr. Tolar today. He's one of the primary physicians managing Gracie's care. His first comments were how beautiful Gracie is. :) He said that she looks fantastic and that she has gone through this process exceptionally well.

Her numbers are still rockin. WBC is over 10 and ANC is over 7. Her platelets are over 100!!! AND she is still 100% engrafted with donor cells! Yippee!!!! Her tummy rash is getting better too.

All good news and a great birthday present for Mommy!

Just wanted to share...

Gracie slept through the night for the very first time last night!!!! When my alarm woke me this morning, I almost panicked as I realized that Gracie had not gotten up since I put her down after her last dose of meds. Eek. I ran in here to find her sleeping away. :)

Today was good. No numbers again since they only drew for the cyclosporine (CSA) levels. We left clinic after Gracie gave them some blood and waited to hear how we needed to adjust the dose tonight. We never got a call. So I am assuming that we're good as far as CSA levels go. Woohoo!

No news about our latest engraftment results yet, I expect to get those on Friday when we meet with Dr. Tolar. Everyone send up a special prayer for 100% engraftment.

Much Love.

Day +46- Just hanging out!

Another great day for Gracie. We had the day off from clinic today so I have no numbers to share, but all in all, we had a good day. Late this morning, Mommy and Gracie took a walk so that Noni (God bless her) could give our room at the RMH a good cleaning. So, the rules are that if a room is being cleaned (vaccuumed, dusted, spraying cleaner, etc.), Gracie cannot be in it. We also have to wait an hour or so to let all the dust and particles settle back down. So Gracie and I enjoyed a long leisurely walk, shopping at the Gopher Store (FYI-the mascot of the University of Minnesota is Goldy the Gopher) for our cousins Van and Nuvy who will be visiting us next week, and to Orange Julius so that Mommy could have her fix. :)

Tomorrow we go into the clinic to have Gracie's Cyclospoin levels checked. Cyclosporin is probably the most important drug that Gracie is taking- its the one that combats GVHD (Graft-Versus-Host Disease). The docs have been playing with the dosage of this drug for a little while because Gracie's levels has been consistently on the slightly low side. Not low enough to be really concerned, but we're really just looking to get into the normal range. Here's hoping that the last adjustment took care of that. We should find out tomorrow.

We're also looking to find out about our engraftment status this week. Tomorrow might be too early to find out, but I'm definitely going to ask about it. Keep us in your prayers for good results.

As promised... I have a few pics of our favorite baldy hanging out in our room at the RMH. sorry for the sour puss, she was not in the mood for the paparrazzi. But she did look cute in her Uncle Mack duds. As it turns out, Gracie- our 11 month old- has to wear size 24 month clothes due to the water retention. I had no idea that she would bloat so much, so naturally, I was unprepared and only brought clothes for her up to 12 months. Uncle Mack did a quick Target run and came back with som cute and comfortable clothes for our fluffy little Peanut. I really loved this outfit on her. :)







Also, please pray for our transplant friends- Rylie (our special Hurler friend) is back in the hospital and having breathing troubles. We have another friend, Mario, whose transplant didn't take, and now his family hopes that the Chemo treatment prior to transplant has rid his cells of ALD. Maddie, an 8 year old with Fanconi Anemia is back in the hospital fighting either an infection or GVHD, and Mara- who has MPS VI is having a terrible time recovering from her transplant. :( Ask God to envelope each of our friends and their families with his healing grace.

Day +45

So while we didn't have to go to clinic at all this weekend, we were definitely still busy. Gracie's med schedule is still so incredibly demanding that I'm almost always busy giving them to her, or setting them up to go through her IV or unhooking the IV med and flushing her lines.... its a true race against the clock. Yesterday we somehow managed to get pretty far behind and Mommy and Gracie didn't to bed until after 3:30 am! Yucky. So Noni gave Mommy a break this morning... and so I took a loooong, much-needed nap.

Gracie has had a pretty good day today, despite the late bedtime last night. She spent a lot of time playing, took all her meds without much trouble, and was her sweet little silly self most of the time. She took a few good naps and even took a bath.

So tomorrow is our second to last ERT treatment, regular lab draw, and a check-up visit with Dr. Orchard. I'm definitely looking forward to hearing how he feels Gracie is doing and what we need to expect in this next phase of recovery.

So I know that its been a while since I posted any pics of our girl. I've taken a few, not many (bad mommy) but I haven't had the chance to uplaod them yet. I promise to try and get around to that later tonight or tomorrow.

We miss you all and appreciate all of your love and continued prayers. Please pray for our friend Rylie who had to go back into the hospital with breathing trouble. We hope she cazn come back here and play with us at the RMH soon.

XOXO