Holly Jolly!

There has been so much going on...my sister got engaged two weeks ago!!! YAY! Welcome to the family Dan the Man! We went to Gainesville last weekend for Dan's graduation from UF with his MBA (he completed the program Charles is in) and I got sick while there. My fabulous mother-in-law came down to help me since I was pretty much worthless for a few days trying to re-cover. Charles and I took Addison to take pics with Santa and then we took a few at these railroad tracks I just love near our house! Hope everyone is ready for the holidays and we wish you a very Merry Christmas! We will get new pics of Baby Girl 2 next Thursday.

No Names Yet...

We still cannot decide on a name for baby girl 2. We did have her big diagnostic ultrasound Thursday and everything looked perfect! She was a wiggle worm with a strong heartbeat! She looks sweet as pie. I am feeling great and have been feeling her kick for weeks. Charles just got to feel her for the first time last week. We think the C-section will be either on April 12th or 14th (I don't like the 13th!). Unless of course princess decides to come earlier on her own! We are trying to prepare for the upcoming changes that are going to take place rather quickly in our house! It is hard to believe I am already halfway through this pregnancy and in my 22nd week! Time flies!

Music to my ears...smiles in my heart!

I was giving Addison a bath Thursday night. Charles was out of town for a business meeting in Jacksonville. Addison was busy blowing bubbles in her bath (normal nightly routine) when she suddenly stopped, looked me in the eyes and said "I love you, Mama". Then she quickly continued her bubble blowing fun.

This was the first time she has ever said it without being prompted or asked. I thought my heart was going to explode with fullness! This was one of Addison's most exciting "firsts" for me (her first smile/giggles were pretty awesome too). I look forward to the many many more heart swelling "firsts" our future holds with our girls.

On a CBC note, our hematologist office called and said their machine was on the outs on Wednesday. I was worried about Addison's hemoglobin dropping more before the weekend so they told me to go to our pediatrician's office to get a CBC done on Friday. Addison has been sleeping about 11.5 to 12 hours straight at night and taking a 2 hour nap everyday...as we all know Addison has NEVER been a napper! This is very very very unusual so me being the worry wart mother I had her blood re-drawn! Not to mention she says "Addy very tired" multiple times a day.

To my great surprise the numbers were drastically different than Monday's. They were what I was hoping to see on Monday.

WBC 5.6 (this is in normal limits for her age...low BUT normal!)
HGB 12.9 (super duper normal limits!)
Platelets 46 (um....highest they have been in months)
Neutraphils 2000 (normal again!)

I realize this is a different machine so there is some variance but these numbers are still MUCH better than Monday's. Charles and I remain guarded with our emotions and try very hard not to get too excited because as all of my blog followers know....this is such a horrible emotional roller coaster we never know what next week will hold for our darling daughter. With that said, I can attest to the fact that those numbers did allow me to sleep a little better and relax a little more over the weekend so that I am extremely thankful for! I guess I can contribute her great sleeping and appetite to a growth spurt?!

Bump in the Road

Addison had a Dr apt yesterday for her 1st CBC in almost 3 weeks! It was so nice to live a somewhat normal life for a few weeks without doctor apt dictating our week's schedule. Addison was due for her port flush (happens every 5 to 6 weeks) and surprisingly that went really well! Addison is no longer terrified of bandades so that seems to help since I have to apply the numbing cream an hour before her apt to help numb the port site. Her CBC on the other hand did not go well, which it typically doesn't when they pull blood from the port. Her counts had dropped across the board which really disturbed me since her RBC has been steady for so many months. The Dr assured us these fluctuations can be normal and last years when you have a compromised bone marrow but with my hormones so out of whack I just didn't handle the news very well at all. I felt like we were back to square one and back to the weekly roller coaster of fluctuating levels. Her counts were:

WBC 3.66 (down from 5.07)
HGB 9.1 (down from 10.9)
platelets 31 (actually up from 29)
Neutraphil 741 (down from 1190)

We had a great Thanksgiving holiday in Vero. Addison lived outside the whole time we were there! Will post the few pics I took later.

Weekend Fun

We went to Jacksonville for the weekend because we were co-hosting a couple's shower for our good friends Andrew and Lynn. The shower was a big success and it was great for Charles and I to have some fun with our old Jax friends!

Our tenants moved out of our Jax Beach house so Charles spent Friday night and all day Saturday painting and fixing up things and I did a light cleaning Sat morning before some new people came by to look at it. Guy and Reva are wonderful and have a client who owns a professional cleaning company who specializes in deep cleanings of vacant property so they had them clean the house today. We have someone finishing up the painting this week and then we will get carpets cleaned and hopefully find new tenants ASAP!

Addison had a wonderful time with Grammy, Pa, Uncle Kelley, Aunt Char Char, Aunt JJ and cousin Caleb and lets face it Daisy and Sadie are her absolute favorite! I am going to post some pics of Addison's first trip to the fair (the animals were a HUGE hit but I think we should have waited a year before putting her on the Catepillar roller coaster with Daddy), baking with Grammy and the Festival of Trees with Mimi and Santa!

Hope everyone has a Happy Thanksgiving and we will post again after Addison's CBC a week from Monday! (it will be 3 weeks since last CBC)

2nd Opinion

Addison met with Dr. Sandler, the head of the hematology/oncology dept at Nemours, on Thursday. The apointment went really well. Dr. Sandler started the visit by telling us how impressed he was with how thorough our doctors have been here in Tampa. He said that it would have taken him months to get to the point to run some of the very specific genetic tests they ran so quickly. He then examined Addison and was amazed (like every other doctor that meets her) to see how completely normal she acts and looks!

He had reviewed all of her biopsy slides with his pathologist and they concluded that her bone marrow has improved substantially everytime it was drawn. His professional opinion was that Addison was exposed to some virus or toxin that caused her bone marrow to fail and that her body is SLOWLY repairing itself. He did not think we should do the ATG/Cyclosporin treatment in January or ever really. The only way he would do that treatment is if Addison's number sigificantly decrease back to severe aplastic anemia levels. We DONT want that! He did say he would repeat biopsy in Jan if her platelets have not increased from where they are today (29) and see what her marrow is doing. He said there are other drugs that have less long term side effects as the ATG that could possibly stimulate platelet production. We will explore those options further if we need to (pray we don't).

We asked him if he felt there was anyway we were missing anything or could it be anything other than this viral induced "bone marrow failure". He was confident it was not MDS and definitely not Leukemia! He made a good point to say that with these cancers/conditions you get worse with time, usually pretty quickly...in Addison's case she has really only improved her overall condition. This was wonderful news for us to hear.

All in all the apointment was what we hoped for and it put everyone's minds at ease a bit. We wanted to confirm that the course of action our doctors have planned is what is best for her and Dr. Sandler agreed with everything they have done/doing. We asked him his opinion on keeping the port and he said he would take it out since we are not using it. I am going to discuss that further with our Dr when we see her next the monday after Thanksgiving! In the mean time we just need Addison's marrow to kick it into high gear and work on replenishing her platelets and neutraphils!