Transfusion #5

I posted last night on our CaringBridge page, but I thought I would update here as well. Bailey had a good day and we got to visit with Jessica who spent the day with us down at Hoppykins. When we got there, I got to review her labs, which were lower than I expected...bummer. She had seemed so energetic lately and her color seemed good as well, so I was thinking maybe just maybe she was keeping good hemagobin levels and maybe making some cells. Spontaneous remission is not common, but hey, it happens, and I can hope, right? So anyways, her hemaglobin was lower than it was last time, 7.6, with a hematocrit of 22.5. So they gave her 124 ccs of blood instead of 90 ccs to hold her over a little bit more until her next transfusion 4 weeks from now. That meant we were there a little longer than usual, which made for a long day. Since Bailey had gotten a little bump on her arm last time after the transfusion which they thought might have been a hive, they gave her benadryl before her transfusion, so she took a few catnaps throughout the day. She kept trying to eat her IV transfusion cord but luckily those 6 teeth of hers didn't puncture the line...can you imagine?!?! She peed her pants so that's why she is sans pants in the picture, ha ha. Dr. Strouse answered more of my questions and day by day, I feel like I process more of the thought of her steroid trial (starting in July most likely). Ugh, I hate all the side effects but hopefully she can get to a low enough dose that has minimal effects.

Anyways, Monday at 8am is her bone marrow biopsy/aspiration. She can't eat or drink after midnight so it might be a long early morning, ha ha. Please be praying for an easy procedure and that I won't worry too much. Thanks again for all the love, support, notes, and prayers!

Paging Dr. Jess.......

That's my girl, after her refill!
(rockin' her Polo shirt and diaper---aww yeah, stylish!)

"Aunt Jessica" and Bails hanging out at Hopkins

Two Successful blood drives!!!

Sorry for the delay in updating the blog and letting everyone know how the blood drive went! It was a success and thank you SOOO much to everyone who came out to donate and stop by Grace last Wednesday (despite the rainy weather and traffic)! We had 63 people come out and of those, they got 54 bags of blood! (They had a goal set of 32 so that was definitely exceeded!) A few people couldn't give for various reasons and some had to leave before they could give b/c they were short-staffed and the wait got longer as the evening went on. Sorry to those of you who came and had to wait awhile. We appreciate your sacrifice sooo much! The bottom line is...the units they collected from the drive at Grace can save as many as 162 lives---isn't that awesome? We are so thankful for the friends, family, church members, new & regular givers, helpers, and volunteers who came out to give. A special thank you to MJ for organizing this blood drive! There will be another blood drive at Grace Fellowship Church in July (July 15th) in honor of Bailey as well...so we would love to have you come out again to give. Even though the turn-out was great (best ever I think!), I am a little competitive and want to see if we can get 75 bags of blood next time...so spread the word and mark your calendar. If you cannot give blood for some reason, and want to help, the Red Cross always needs volunteers and you could help out that day signing people in or giving out cookies (Famous Amos..Mmmm!), just let me know and I will get you in contact with the right people. Below are some pictures from the blood drive at Grace.

Last Friday, there was ANOTHER blood drive in honor of Bailey at Ben's work, Legg Mason. I haven't heard what the final #s were, but the sign-ups before the actual drive exceeded previous drives---I think somewhere around 30-31 people! I love that people are coming out of the woodwork and helping out! We feel so honored and privileged to have people that care come out and give, and that some are first time blood donors! It's not so bad, right?

Cousin Mike giving his blood donation---thank you!!!

Zach & Jess (Bailey's honorary "aunt" & "uncle")---thanks for waiting!

Our youngest blood donor, just kidding. Madison waiting for her mommy.

Jeff leaving a note for Bailey bean on the poster.

Mommy giving some blood too! I guess I can't be a wimp about needles since Bailey has to get them all the time. That whole lead by example thing I guess.

Great friends!

Aunt Ro and Bailey's Mom-Mom (Annmarie) came down from PA for the blood drive!

Don't forget---Blood Drive on Wednesday!

Just a reminder that there is a blood drive on Wednesday (15th) at Grace Fellowship Church from 2:30-8:30pm in honor of Bailey! So far, there are 44 people signed up (which is great) and we are hoping for more walk-ins! Hope to see you there!!!

A New Decade!

Ok, so does this mean I am officially old? Ben threw me a Surprise 30th Birthday party at Lapalapas last weekend! Had some great friends & family there and got to dance, eat, and be merry! Thank you Ben! Bailey had her first evening with a babysitter and they both survived! Bailey's friend Molly even drew me a picture! That girl's got some talent!

O-O-Ooohhhh The Right Stuff

Just a little blast from the past! So I turned 30 and two weeks before that I got to pretend I was a teeny-bopper again...and went and saw the New Kids on the Block in concert. Consider it my own little "mid-life" moment! But it was so fun. I admit, I was a little embarassed to admit that I was going but what the heck...it was SO fun! I went with Jessica and a friend of hers from work and we had a great time. It was seriously the LOUDEST concert I have ever been too. My ears were ringing for a day or so! Screaming girls...and screaming women with oversized NKOTB pins, not to mention the obnoxiously drunk 20-something year old behind me that spoke at an octave higher than I have ever heard before! There were even a few men there...obviously some boyfriends and husbands that owed their wives/girlfriends big-time! Highlights were hearing "Cover girl" and "Hanging Tough" and feeling like I was back at the West Virginia State Fair at age 10 screaming my own head off wearing my black t-shirt with neon green NKOTB letters!!! (Yes, I saw them at the WV State Fair, ha ha) I cannot believe however that Jordan can still sing like a girl...did I really think he was attractive when I was younger??? They should however, stick to their oldies but goodies...they just seem silly singing new songs about love, women, summer, and being sexy now! But their old songs just gave me that nostalgic feeling...I admit it! Anyways, kudos to five grown men who can still get up on stage, sing, and dance for 3 hours. Not bad for their 40's! Nothing like living in the past for a night and remembering those early 90's...scrunchies, 90210, and five guys who could shift their legs side to side in sync with each other dancing...oh yeah...they had "the right stuff." Thanks for the ticket Jess---what a fun night!!! And yes, I do think Joey smiled right at you (j/k)!

Transfusion #4

Bailey had transfusion #4 today. All in all, it was a good day. I took her down to Hopkins today by myself so I quickly learned not having my mom or Ben there was definitely harder than I thought, when trying to entertain a 9 month old for 4 hours who wants to crawl and climb on everything...but is attached to an IV pole by her transfusion line! The nurses were great as usual and love to help carry her around and play with her. I got to touch base with Dr. Strouse, and with Dr. Keefer, another hematologist, who reviewed her blood lab results from yesterday with me. Bailey's hemoglobin was at 8.3, which is slightly higher than it was before her last transfusion, which means she kept a good level between this transfusion and the last, even with several colds/viruses, which can sometimes knock red blood cell counts down. She also went 4 weeks in between transfusions this time instead of three, so gooooo Bailey! Ben and I did notice that she was fussy this past week and got up all the time throughout the night the past few nights...and commented it was time for a transfusion, so we could tell she was getting low. Her reticulocyte (new red blood cells) cell count was 1.9, which is the highest its been (aside from a random elevated level on a Labcorp lab which was measured differently than Hopkins' values). Again, we try not to put too much stock in one lab value, but an elevated retic count is good. It could be due to her body producing some natural steroid in response to having been sick recently (apparently, our bodies do this---who knew?) which in turn stimulated her bone marrow to make some new cells. Or she could just be starting to make some herself. So we will see. Again, the whole cautiously optimistic thing! Because Bailey still has a cough and runny nose from the RSV she had last week, its a no-go for the bone marrow biopsy/aspiration until she is 100%. So she'll most likely have that procedure next month.

It was a full house down in the Infusion wing today! I hadn't seen it so busy before. With all that blood going out to kids that need it, I am even more excited for the blood drive coming up! Oh, and Kara, thanks again for the socks. The nurses loved her little stylish flower socks!