Blood Drive at Grace!

Grace Fellowship Church Community Blood Drive
in honor of Bailey Lightner

Wednesday, April 15th, 2009
2:30 PM to 8:30 PM
Grace Fellowship Church-Great Room
9505 Deereco Road, Timonium, MD 21093

Please call MJ Simmons at 443-286-6673 to schedule your life-saving donation.
See www.gfc.org for more information (or just ask me!)

3 for 3

Dang-we were so close to making it out of the month of March unscathed...but this evening, we headed back to GBMC's Urgent Care/ER...got our same room #4, and marked "going to the hospital in March" off of our To-Do list. Sooo, in April, we are going to try to make it through the month without a hospital visit...that is our new goal! Bailey had a fever (104.5!!!) this afternoon, threw up her lunch from coughing so hard & gagging, and just seemed miserable. The pediatrician's office was closing when I called, so we had to take her to the hospital for a chest x-ray. They ruled out pneumonia, UTI, & flu, but she tested positive for RSV. So our poor darling has to wait for this yucky virus to run its course. She just can't catch a break it seems. They did get to check her blood levels and her hemoglobin is at 8.9, so it's holding steady, even with one week to go before her next transfusion. I hate the thought that in a week, she has to go get pricked again, once on Tues for her bloodwork, and then on Wednesday for her transfusion IV. Her white blood cell count was a little elevated, but expected since she is fighting this virus. Sooooo it looks like we'll be cancelling our trip to WV for the second time b/c she's sick. Can spring just get here already??? So we are back home now. Bailey just went to sleep and we are hoping that she can sleep okay tonight and be comfortable and we can all get some rest. What a little trooper she is.

On Monday, we had Bailey's 9 month appt---can she really be 9 months already??? She is a little string bean...14 lbs 6 oz (<5th %tile)...but she's on the 50th %tile for height (can't remember the length off the top of my head). But she's growing...and we are happy for that. We are trying to fatten her up as much as possible until she gets put on steroids, which can sometimes restrict growth. Grow baby grow!!!

And on a side note...save the date...April 15th 2:30-8:30pm at Grace Fellowship Church there is a Red Cross blood drive in honor of Bailey! Did you know the Red Cross is only 1/2 day ahead with its blood supply!? I'll be posting more information when I have it.

Sun Night at 8pm!!!

Just to let you know...Sunday night (March 22nd) at 8pm on ABC, Extreme Makeover-Home Edition is building a house for Lizzie Bell, a girl with DBA (the same thing Bailey has), and her family. Check it out!!!

"Ty and the gang go to Tucson, Arizona to rebuild the dangerous home of a 14-year-old girl suffering from a life threatening blood disease." -EM:HE website

This was written about Lizzie:

"EXTREME MAKEOVER: HOME EDITION" REBUILDS THE DANGEROUS HOME OF A
14-YEAR-OLD GIRL SUFFERING FROM A LIFE THREATENING BLOOD DISEASE WHO HAS DEDICATED HER LIFE TO SPREADING AWARENESS ABOUT BLOOD DONATIONS"

"Bell Family" -- "Extreme Makeover: Home Edition" will be traveling to Tucson, Arizona, to tell American Red Cross hero Lizzie Bell and her family that they'll have a new home in only seven days. The episode airs SUNDAY, MARCH 22 (8:00-9:00 p.m., ET) on the ABC Television Network.

Lizzie Bell was born with a rare blood condition that is characterized by a failure of the bone marrow to produce red blood cells. Less than 700 kids in the world are stricken with this disease, and 14-year-old Lizzie is one of them. The only thing that has kept her alive are the routine blood transfusions she has every two-three weeks. If she gets sick, she often has to go to the hospital so doctors can monitor her and keep her stable.

When Lizzie was five, she and her mother decided to visit her local blood bank. There they learned that the refrigerators that should have been full of blood weren't. They didn't understand until that day just how desperate the nation is for donated blood, and decided to do something about it. The family established the John P. Bell Foundation, and for the past ten years little Lizzie and her family have been working hard to raise awareness about the desperate and ongoing need for blood donations.

Lizzie was given the Red Cross Hero Award for her ambassadorship in telling others about blood drives and donating blood. But while she's been helping countless others, the Bells' home has been neglected because of Lizzie's high medical bills. The home is sinking, has gaping cracks in the cement floor, suffers mold and termite problems and needs countless repairs. These conditions are dangerous to Lizzie's health and her vulnerable immune system, so it's up to Ty and the designers to help the Bells spread the word, lighten the load and give Lizzie a comfortable and healthy home.

In addition, ABC's "Supernanny" Jo Frost joins designer Eduardo Xol at one of the family's blood drive awareness events by collecting and redistributing toys for ill children in the community. While Ty and the designers, local builder John Wesley Miller Companies and hundreds of volunteers and workers are building their home, the Bell family will go on vacatit's up to Ty and the designers to help the Bells spread the word, lighten the load and give Lizzie a comfortable and healthy trip to New York.

The design team for this episode of "Extreme Makeover: Home Edition" will feature team leader Ty Pennington and designers Ed Sanders, Eduardo Xol, Rib Hillis and Didiayer Synder.

http://abc.go.com/primetime/xtremehome/index?pn=index

100,000 Miles

I hit 100,000 on my faithful Dodge Dakota. I love that truck. Ben made sure I was driving her when it got near the 100K mark...I was heading up 83 coming home from Hopkins last week. I took a picture on my phone but it was blurry...the trade off for watching the road and not getting a perfect shot of the odometer. So she hit this mark just before her 6-year bday (March 13th) from when I bought her. Now, if she can just keep on running for 100K more!

Transfusion #3

Well, transfusion #3 at Hopkins went well on Thursday! Ben and my mom took Bailey down for the 10am appointment and I met them down there around noon after working part of the day. As usual, little cheerful Bailey was sitting up playing and being carried around with her cute little IV pole. I must say she looked especially cute with her little pink bow. She got started receiving the transfusion around 11am, and the four hour transfusion went right as scheduled and we headed home somewhere between 3 and 4pm. I am excited that she is able to crawl around still even with the needle in her hand, the way they attached it, so she wasn't too restricted. We talked with Dr. Strouse and we went over her blood work from Wed's blood draw. It looks like the lab values from Labcorp that we had the previous week were done differently because her reticulocyte count (0.7) was no higher than the previous labs done at Hopkins. So, very unfortunately, it is safe to say that her body has not begun making its own red blood cells. We also learned more about what to expect when she begins steroid treatments around a year of age. She will receive 1 of 2 different steroid drugs (prednisone or prednisolone) and will typically begin with 10 mg a day, then go to 20 mg every other day, then they start to taper her off to see if she can maintain a low enough dose (and her body continue to make its own red blood cells) to remain on it. So I have a fun filled day ahead of me...filling out about 100 pages (no joke!) of forms for the NIH study we qualify for...and then heading to the NCR trail...its already 65 degrees out!

Bailey is scheduled for her bone marrow biopsy/aspiration next Wednesday at 8am. It's an outpatient procedure so we'll be home the same day. It will be painless for the most part since she will be under anesthesia, but the needle site might be sore a few days. This biopsy will confirm her DBA and give the doctors more information about how her bone marrow is functioning and whether it is now producing any red blood cells. Please pray for a safe and painless procedure!

I started a CaringBridge page for Bailey that will have information about her DBA journey on it.... www.caringbridge.org/visit/baileylightner (it's still a work in progress!). Eventually, it will be accessible from the DBA Foundation website (www.dbafoundation.org) under the For Families section. That way, our family blog will talk about the other wonderful things in life OTHER than DBA as well!

2 for 2

ER Visit in January-CHECK
ER Visit in February-CHECK
ER Visit in March-To be determined!!! (hopefully not)

We have been initiated as new parents now, as we have had our first middle of the night ER/Urgent Care trip! Thurs night Bailey spiked a fever pf 103.5 and super daddy took her in to get checked out. She had the same doctor she had when we had to take her t GBMC in January for her anemia, so the doctor was glad to find out how she was doing regarding her last time in the ER. This time, pretty much just a virus they think, and we just have to let it take its course and just treat it with Tylonel. Through it all though, Bailey's been fine, other than her feeling like a hundred degrees (literally!), and a little sleepier, she was happy-go-lucky through the past few days of her fever. She still has a low grade temp, which we feel pretty confident we can attribute to the FOUR new upper teeth she is cutting at the same time. If she bites me, breastfeeding is over! Ok, so let's make it 2 for 3, with no hospital trips in March!!!

It was a great weekend though, and we had a baby dedication at our church with four other families. We had the blessing of family and friends there to witness it, and even a special surprise visit from her Great Uncle Billy and Great Aunt Freida from Virginia, who hadn't gotten to meet her yet.