yesterday's appointment

Our appointment yesterday was actually kind of comical. Gracie had kicked the fever the evening before and was feeling much more like herself. We drove over to Nemours in Jacksonville and we're shown into our exam room immediately upon arriving. As the nurses and then Dr. Joyce came in, Gracie put on one of her best shows of smiling, flirting, and playing. Dr. Joyce took one look at her (and listened with his stethoscope) and canceled the xray of her chest and the blood cultures. Why? Because as of right now, she's fine. There's no need to draw blood again and certainly no need for another xray. She had gotten both of those things done here in Lake City at the ER and nothing has shown up in any of them. So they giggled with us and cheered and clapped with Gracie and sent us back home (after about 15 minutes total) with instructions to call and check in with them on Monday and Thursday, and of course to call if there were any changes. Our next appointment will be a week from this Tuesday if all goes well, and we hope at that time to get another culture showing that Gracie is RSV negative. Until then, we're keeping Gracie pretty close to home if at all possible. We want her to stay well and rested and minimize her exposure to any more germs while her new immune system is busy kicking this virus in the butt.
Thanks for all of the extra prayers and please keep them coming. We need her to strong and keep fighting this virus. We're praying that she continues to keep the symptoms at bay and stays fever free.

Much love.

The good news...

Gracie's fever is gone. She's been having normal temps and she seems to feel much better and has been playing and eating a little. She's not 100% though, and so I'm halfway waiting for the other shoe to drop. Of course, she may surprise me and kick this nasty virus without a whole lot of trouble. I certainly hope so. Only time will tell.

We head back to Nemours today to let Dr. Joyce have a look at Gracie and probably draw a few more cultures. I'm praying for a pretty clean bill of health other than the RSV (and maybe even the miracle of the RSV being crushed by Gracie's new army of white cells- hey, a mommy can hope, can't she?) and to stay out of the hospital. I hate the idea of penning Gracie back up in a little room again. :( But we will do what we have to do to keep our girl as healthy as possible.

Please say a prayer for our girl today, no more RSV. And please continue to keep Liam's family in your prayers as well. I am just so sad for them.

xoxox

heavy hearts

I'm so sad to tell you all that another Hurler Angel has gained his wings today. Liam lost his battle this afternoon and is now home with God and Hurler free.

Our hearts and thoughts are with the Larrow family. We hope that they may find some peace and comfort in this most difficult time.

Update...

So after speaking with our nurse this morning, we do not need to head back to Jax as of yet. Like I said in my previous posts, RSV is a virus and therefore, its not really treatable... all you can do is treat the symptoms. So far, Gracie's only symptom is a fever and we've gotten it down to a reasonable 99.7 degrees with Tylenol. Dr. Joyce wants us to go back to the ER today and get another IV infusion of a general antibiotic just to be on the safe side, since we now know that Gracie's new immune system is going to be busy fighting this RSV for a little while.

Other than that, we have to just let this run its course. We have to make sure that Gracie is well hydrated and keep an eye on her breathing. We have a prescription for a nebulizer and meds to use to try and break up any secretions that may start hanging around her airway, and so we'll just watch closely.

Still feverish...

and waiting to hear from the doctor to tell us what to do.

Unfortunately for a viral infection there's really not much to do besides treat the symptoms. Right now her only symptom is a fever. I'm not sure if they will want her to go back to Jacksonville and be admitted to Wolfson's or of they will want her to stay home and have a close eye kept on her. I'll update when I know anything.

Please pray extra hard for Gracie.

Long day at clinic, followed by a long night in the ER

Thats right friends, we just got home from the Emergency room. This afternoon after getting home fom Jacksonville and our clinic visit, Gracie decided to spike a pretty good temp. We took her temp several times over the next few minutes to be sure, and we were- her temp was 101.8!!!! For all post-transplant patients, this is a terrifying moment. We called our Doc at Nemours, heard back from him within minutes, and headed over the the local ER to have some tests run.

To make a (very) long story short, Gracie has RSV. RSV is a yucky respiratory virus that can wreak havoc on delicate lungs and a beand new immune system. Needless to say, we are none to thrilled with this new hurdle to jump. On the other hand, Gracie's cell counts are pretty good, and we have some great doctors here and in Minnesota who we know we can call on at anytime. Anyway, we were sent home with a prescription for a nebulizer (for treating the virus when it starts getting nasty and causing cough and wheezing and stuff)and instructions to call our doctor first thing in the morning. Yikes.

So to our loyal friends and readers out there, I ask you to pray for this case of RSV to be mild and for God to strengthen and protect Gracie's lungs from attacks by this icky virus. Pray for quick healing and strong white cells to fight it off. Pray for protection from fevers and illness.

God, please protect my precious baby.

Sending our love to Liam Larrow

Hi, everyone! Aunt Hys here, again.

As you know, we follow the journeys of several other families who are also battling Hurler syndrome. You can follow them, too, by clicking links from the list at the right side of your screen.

Every child who has Hurler is in a fight for his life, and every Hurler parent must, at some point, lay her child's life at the feet of powers greater than a parent's love, and trust that whatever is on the other side of the struggle is right and good, and is the way it was always meant to be.

Liam Larrow, one of the children we're following, is really down on the mat today, as is his mother, who writes his story at Caring Bridge. Please keep Liam and his family in your thoughts and prayers, as he has come to a critical moment in his struggle for life. Also, if you can, take a minute to sign his guestbook, and let his family know you're pulling for him, too.

Thanks for spreading the love around. After all, that's what it's for, right?