Friday, December 17, 2010

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.

Tuesday, December 7, 2010

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!

Saturday, December 4, 2010

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?!

Tuesday, November 30, 2010

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.

Friday, November 26, 2010

Sunday, November 21, 2010

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)

Friday, November 12, 2010

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!

Wednesday, November 10, 2010

Happy Wednesday

Addison had her doctor apt yesterday. Going every two weeks seems to really help Charles and I (more me) with our anxiety about the CBC results and Addison didn't mind it yesterday at all. She was an angel! We thought they were good results. We feel our doctor is hesitant to confirm this is positive since it is such a small increase and we are getting a second opinion at Nemours tomorrow. She did say steady results is better than declining. Also Addison is getting over her first cold EVER so that could affect her WBC counts!

Here were her counts:

WBC 5.06 (highest ever since this roller coaster started in June)
Neutraphil 1.19 (slightly lower than 2 weeks ago but staying steady in 1000's)
HGB 10.9 (steady in 10's for months now)
Platelets 29 (23 three weeks ago, 25 two weeks ago...so maybe a small steady increase) will see in three weeks.

We don't go back to our hematologist in Tampa until the Monday after Thanksgiving and she will have the port flushed. YUCK! Then if her platelets have not increased to the 40s/50s by end of December we will repeat biopsy Jan 5th and based on those results we will plan to start treatment early January. Needless to say all we want for Christmas is Addy's bone marrow to kick it into high gear! Keep the prayers coming...God is working hard at heeling her!

Wednesday, November 3, 2010

Double the Sugar...Double the Spice


Charles, Addison and I are expecting another baby! And yes we already know it is a girl! Isn't technology awesome!? I am 16 1/2 weeks pregnant. We found out in August and with everything going on with Addison we were keeping the news to family. I am sorry it has taken me so long to update our Blog followers. Her due date is April 18th so her and Addison will be 2 years and 2 weeks apart!

I will be the first one to say I thought for sure I was having a boy because this pregnancy has been so different than Addison's but the sono technician has assured me there is no room for error when she tells me with 100% certainty it is a girl. We are so very excited and I have already picked our nursery bedding and furniture!

Addison is the cutest almost-big sister you have ever seen. She carries the sonogram picture around and kisses it saying "baby". Then she kisses my belly button and says, "Baby behind Mommy's button!" So cute! She does NOT like seeing me get poked by the doctor so Charles has accompanied me to all appointments. I hope Addison knows the feeling is mutual...I don't like seeing doctors poke at her either!

We do not have a name picked out yet...we were planning on Charles Guy Bond III (Trey) but as we can see God had different plans for us! That's OK though, we look forward to all the fun 2 girls will bring to our home.

Monday, November 1, 2010

Trick-Or-Treat!!!!

Yesterday was one of those days that just made my heart bubble with love for being a mother! There is nothing more satisfying in life than seeing my daughter happy and taking in everything going on around her.

Aunt Char Char came into town this weekend and Addison is very vocal with her demands. She had no problem telling Char Char to sit and color or sit and play with her. Saturday while watching the Gator game Addison wore her orange and blue tutu with pride and twirled all around the house only stopping to throw her arms in the air and yell "Touchdown...YAYYYY!!!!!! Go Gators!!!!!" Daddy was a very proud Daddy! During halftime we carved our pumpkin! Addy was mesmorized by the pumpkin guts.

Sunday, Halloween, Addison decided to wake up at 5am. She did go back to sleep for about an hour. It must be a rule in the Children's Guide to Life Book that they must deprive themselves of sleep the night before a big day and then refuse to nap! Once we put on Addison's Minnie costume all crankiness went away...and can I please say that we had the cutest Minnie Mouse I have ever seen?! We went to a great Halloween party at the park at 2 and Addison said "Party fun!" the whole way home. We came home and relaxed for an hour or so before meeting some friends, I mean Sleeping Beauty and Snow White, to go trick-or-treating. We were interested to see how Addison would do and to our great surprise she loved it and even said "Trick-or-Treat"! Of course not to the people handing out candy but as soon as we would walk away the words would come out of her mouth! What can you do?! She got to stay up about an hour past her bedtime and also go to eat some of her treats on the way home! That's a good day in the life of a 19 month old!

Hope everyone else had a fantastic holiday. Above are some pics of the weekend and our professional pumpkin patch pics that we took in Jax.

Monday, October 25, 2010

Silly Monkey

Call Addison a Silly Goose and she will correct you and tell you she is a Silly Monkey! Make sure you get it right! :)

We are now going to the clinic every two weeks. It makes me a little nervous not knowing what her counts are every week but it is better on Addison not facing the needle prick weekly. We went this morning to get Addison's port flushed (our least favorite thing in the world to do). It was pretty terrible for Addy but the nurses were super quick so it didn't last too long. Addison and I made Halloween cupcakes last night to take to the nurses and to use as a comfort tool to get her through the port flush. :) Smart Mommy! Addy LOVES her some cupcakes so when she she was done being tortured she ate a cupcake and the bad moment was over just like that! Oh yea, she also had one for breakfast! :) I am such a softy.

Her counts were good. They didn't drop so that is good.
WBC 4.41 (2.96 last week)
Neutraphil 1.26 (.85)
RBC 10.7 (11.1)
Platelets 25 (23)

We are so hopeful that the rise in the WBC and neutraphil will continue to increase and not go back down anymore. The platelets will start to increase once her WBC gets to a more normal level. 6.0 is the lowest normal for her age for WBC. Her neutraphil (what fights infection) is actually just barely in normal range. 1.2 is normal. They have been here before but then the next week they drop back to 2.9 and .850 so it will be interesting to see where she is in two weeks. At least we don't have to flush the port for another 5 weeks!

Wednesday, October 13, 2010

Weekend in Jax

We had a nice family weekend in Jacksonville celebrating our adorable nephew's 2nd birthday and my handsome husband's 29th birthday! I forgot my good camera so no really great pics of party. Bad Aunt Megan!

The really neat things about the weekend were watching Addison and Caleb interact together. Caleb absolutely adores his cousin and he is so sweet with her. Addison is still in the parallel play stage but it was still cute! The second Caleb noticed Addison was around he would scream (I mean SCREAM) "ADDY!!!!!!" repeatedly till she acknowledged him! So cute. He wanted her to do everything with him.

Addison finally said Grammie this weekend which made Reva very very happy. I am not going to lie, Addison's favorite family member is Daisy at the moment but I think Grammie is a close second! :) She also said Char Char loud enough for us to hear her (she has been whispering it for weeks...very strange) and she of course loves Kick-a-ball...Char Char and Adam's dog.

We went to the Dr Monday and Addison's counts were:
WBC 2.96
Neutraphil .850
Platelets 23
HGB 11.1

Dr was not concerned so I guess I shouldn't be either. I still don't like lower numbers. We are now doing CBCs every two weeks but she will need her port flushed next week. YUCK!

Wednesday, October 6, 2010

Absence makes the bone marrow grow stronger.....

And our hearts grow fonder!? Addison went to the pediatrician Monday when we got back from our cruise and her weekend at Grandaddy and Mimi's. Her counts were pretty good as Charles posted previously. My parents attribute it to the large amounts of cupcakes Addison ate...who knows! I will get excited about these numbers once I see them remain higher a few weeks in a row. We all know CBCs are a roller coaster from hell.
Again her counts were as follows:

WBC 4.2
neutraphil 1.6 (at lowest range of normal..these fight infections)
HGB 10.5 (been 3+ months these have been stable)
platelets 27 (YUCK!)

The cruise was wonderful! We really enjoyed the "us" time and I think I did pretty well for my first time away from Addison. I did call Mimi everyday to put my mind at ease...can't wait to get this months cell phone bill but totally worth every penny! Besides the Gator's pitiful excuse for a game the cruise was so much fun. We did pretty good in the casino and relaxed by the pool (well I relaxed and Charles went down the slide...over and over and over again!). I came in 2nd place for the Black Jack tournament and Charles made some money on the Craps table.

Since we have not been getting good news recently from doctors about Addison I have to brag about the first good news we have received! So sue me I am a proud parent! Addison's pediatrician said she is more at a 2+year old developmentally since she can say her ABC's, count to 10 and place 2-3 words together to try and form a complete thought! We are so very proud of her. Guess this house arrest thing has paid off on some levels. She went from the 56% percentile in weight to the 90th at 28 pounds (think the cupcakes played a part in this) and from 96% to 93rd% in height at 33.5 inches tall! She is definitely NOT petite!

Addy Bo Baddy Update

Ok since Megan isn't going to share the good news I'll jump on it.

Addison had a good CBC this week. Her hemoglobin is still normal, her WBC went up (from 3.4 to 4.2) and her ANC went WAY up to a normal range (from .6 to 1.6). Her platelets are still low (from 24 to 27) but everything else went up.

I'll let Megan fill you in on the other stuff. Just want to keep the good news coming!

Monday, September 27, 2010

Monday Clinic

Not much to say about today. Numbers were not what I had been praying for, what we ALL have been praying for. Lets start with good news though: Cytogenetics came back normal! YAY! This means no cells appear to be changing into cancer or MDS or anything else horrible! Still looking at faulty bone marrow...stinky stinky....but could be worse and it's not!

Counts:
WBS 3.39
Neutraphil 670 (low....)
HGB 10.3 (been that for a few weeks now so I feel comfortable red blood is good)
Platelets 24 (In the TOILET) Why aren't they going up!?

Charles and I leave for the cruise (won it through work) Thursday but we are leaving Addison Wednesday in Vero because he has work stuff Wed night and Thursday morning before the cruise. I am a nervous wreck about leaving her. This is the first time we are leaving Addison to go out of town...out of the Country..and with her "condition" it makes me a bit nervous. I know this will be good for us to get away and de-stress (is that possible?) and sleep in (definitely possible!). We need the break and I know Addy will be in great hands and have a blast with her Mimi and Grandaddy.

Friday, September 24, 2010

Wednesday, September 22, 2010

Addison Update

We had a nice relaxing weekend in Vero which was much needed after last week. We all had a great time at Grandaddy and Grandma Brown's 60th wedding anniversary party. Addison especially loved playing with the other children there. It was good to see her socialize since she hasn't had much of that in the past few months. I will post pictures later of our cutie!

We met with our Dr yesterday. Of course I was nervous as usual before we get a CBC. Her counts were as follows:
WBC 3.91
Neutraphils 1.59 (normal for her age is 1.2-9.0)
HGB 10.3
platelets 33

The Dr said the neutraphil count could be elevated due to the stress of the biopsy and the anesthesia. She said to expect it to drop back down to around 800 where it had been holding steady by next week. Or better said: don't be alarmed if it does.

The double biopsy results came back. Keep in mind in June the left side biopsy was at 10-15% cellularity. This time it was 15-20%, not a huge improvement but still an improvement. The right side came back at 50-60%! These numbers made more sense since we knew Addison was making blood somewhere, we just couldn't figure out where. The flow cytometry confirmed no leukemia but the Dr said she couldn't guarantee it wouldn't turn into it. We all knew that since aplastic anemia can be a pre-cursor for other illnesses. The biopsy did not reveal many megakaryocytes which are responsible for making platelets...this explains why the low number of platelets. They are the last thing to respond when the bone marrow is trying to heal. She did have many immature white cells which is what appeared to be blasts under the microscope to the pathalogist. Her red blood counts are normal but they were slightly abnormal in shape/size under the microscope. This could be normal in bone marrow that is working in overdrive. We will know for sure when the cytogenetics come back next week. The doctors all agree that we need to give Addison an additional 3 months to watch and wait to see if she continues to heal herself then repeat a double biopsy (this will mean minimum of 7 biopsys for our angel). Patience is a virtue...so I am told.

Friday, September 17, 2010

Moving Forward

Our entire family has experienced what I think has to be the worst 24 hours in our lives. Poor Addison has had an exceptionally hard 48 hours of being poked, prodded, and pricked. After her double bone marrow biopsy on Wednesday the doctor called me around 5:30 and told me the pathologist called him with alarming news. He saw 20% lymphoblasts in her marrow and blood smears. The pathologist was concluding Addison had pre B-cell Acute Lymphatic Leukemia. All of the doctors in the practice were completely shocked by his findings as they have never seen leukemia present itself like this. I asked the Dr if he could be wrong but he said probably not with the percentage being that high. He told us the only way to know for sure is to come back Thursday morning to the hospital and get ANOTHER biopsy and aspirate and also to draw spinal fluid to make sure the leukemia has not traveled to her nervous system. They were going to do a flow cytometery test on the aspirate which shows the specific marker on the cells that identify them as leukemia. About 30 minutes after the Dr called a nurse from the hospital called to go over what we needed to do to prepare Addison for the procedure and also that we were being admitted to the hospital immediately after the procedure to start her first round of chemotherapy. This was not explained to me by any doctor and I pretty much lost it. After everything we have been through and then to have them tell me they are 99% sure my daughter now has leukemia and we need to start chemo immediately to be aggressive...I just couldn't grasp what they were telling me. Charles was still on his plane to Boston so I couldn't even talk to him about it. I can't even explain the surge of emotions that we were feeling. It was hard to breathe to say the least. I just kept begging God to make this happen to me and not Addison. She doesn't deserve any of this.

Reva, Addison and I got to the hospital at 9:20 and Charles and my sister flew in and were there by 10. My parents flew all night from Seattle and arrived around 11. Charlotte drove over and got there about 3. Accessing the port was extremely traumatic for Addison again and afterward she gave everyone the cold shoulder for about 5 minutes...including me! :( Her counts were slightly better except her platelets which were at 26. They have to be above 30 for the procedures so she had to get a platelet transfusion. I was not thrilled about that. Finally at 1:30 Addison went back for her procedure. Keep in mind she couldn't eat or drink AGAIN today. The waiting while she is back in the OR is horrible. I am happy to report Addison woke up so happy this time from anesthesia! Charles and I walked back and there was our 17 month old precious baby girl looking like she was 4 years old. She was propped up on a bed with her Addy pillow behind her, a pretty blanket wrapped around her with all her stuffed animals surrounding her and she was calling mommy and daddy on the hospital phone! She then sucked down three apple juices and scarfed down 3 graham crackers and she was ready to rock and roll. She didn't seem to be bothered that she now had 6 holes in her back.

We went up to her new hospital room and fed Addison some real food while we waited for the results of the flow cytometry. We also became a little more educated on chemo and her first round would include a shot of chemo into her spinal column which would mean three days in a row being put under. UGH!

The Dr we had met with that morning who use to be the director of the hematology/oncology department came to our room around 5:30 to tell us the flow cytometry showed NO LEUKEMIA! yes this is absolutely wonderful news and we were so thankful. On the flip side we sat there looking dumb founded because we didn't know if we should believe them. How could they make us think our daughter had this terrible cancer if there was still a chance it wasn't true? Apparently the pathologist saw immature lymphocytes (WBC) which can resemble leukemia blasts. It appears her bone marrow is on the mend and it is spitting out a high number of these new baby cells and the pathologist saw such a huge amt which is rare and assumed they were cancer. This is obviously unacceptable but now is a time to put this behond us and celebrate and not be mad. There will be a time for that but as of today we are enjoying Addison and trying to make sure she doesn't remember this horrible experience. And of course thanking God for the good news!

Wednesday, September 15, 2010

A Loooong Day

It has been an extremely LONG day but with a good ending so we will take it. Addison, Daddy, Grammie and I were at the clinic at 8:45 this morning. Addison had to stop drinking fluids by 8am and hadn't eaten anything since last night's dinner. Accessing the port today was miserable. Her CBC was slightly better than Monday (an increase is an increase so we will take it).

WBC 3.93
Neutraphil 740
HGB 10.5
Platelets 28

We had Dr. Reed today, we had never met him before, but really liked him. After the port access was completed and we chatted with the Dr for awhile we were sent to a room to wait...and wait...and wait.... We were finally taken back to prepare for the procedure at 12:15 where we continued to wait....and wait....and wait another hour! Our poor baby started asking for "juice?" "milk?" "eat?" around 12:30. We had to keep distracting her. Grammie was a big help in that department. They FINALLY took her back at 1:15 (4 1/2 hours after arriving to the clinic).

They did let me into the procedure room and hold her while they gave her anesthesia. Once she was out I put her on the table, kissed her sweet nose and walked out leaving her care in God's and the doctor's hands. Not an easy thing to do as a mother. I met Charles and Reva in the recovery waiting room. Poor Charles had to leave to catch a plane to Boston at 1:45 and Addison woke up at 1:50. Both biopsys went fine and they decided to do an aspirate as well. We should have those results by Friday. Addison woke up a bit cranky. That is to be expected. Then she gobbled up two bags of teddy grahams and slurped down an apple juice. She munched on some cheese puffs in the car and passed out about 5 minutes from the house. She is still sleeping off the anesthesia.

We are glad today is over and our princess baby came out of it ok. I anticipate her being a bit sore but as usual her spirits are high! I will post pictures soon. You have to see the adorable dresses her Aunt Char Char made her and her Great Aunt Merc embroidered! ADORABLE! ....to say the least!

Thank you everyone for your continued prayers and support. They help tremendously.

Tuesday, September 14, 2010

Staying Hopeful

We took Addison to the Tampa Hematology Clinic yesterday because they needed to flush her port again and draw the final blood test. She did so much better with the port access this time which was a relief to both mommy and daddy! We were successful at distracting her with lots of bubble blowing, singing and reading books. Her CBC came back and it was not great. Her platelets have dropped again this time to 25 (lowest they have been since before July 19th).

WBC 3.3
Neutraphil 700 (lowest they have been in a few weeks)
HGB 10.3 (11.4 last week)
platelets 25 (37 last week and 47 week before but 28 week before that)

Because Addison's counts dropped again the Dr recommended doing another bone marrow biopsy. We knew this would have to be done again but was not anticipating it would happen this soon. We need to know exactly what her body is doing and your peripheral blood (CBC) only gives you a snapshot. We need the full picture. So this means our poor baby has to be put under AGAIN and is getting a double biopsy this time. They will draw a sample from each hip bone. The reason they are doing this is because they have seen significantly different numbers from each side in other cases. So Addison will now have two scars on her beautiful back instead of one. :( This is taking place tomorrow morning. Not a lot of time to mentally prepare but we need answers and the sooner we get them the sooner we know what to expect moving forward.

When Addison had her first biopsy in June her bone marrow cellularity (% that bone marrow is functioning) was around 10-15%. Normal for Addison's age is about 80%+. When she had her second biopsy July 20th it was not a clear sample and they guesstimated her cellularity to be between 20-40% which showed great improvement only 6 weeks after her 1st biopsy (they were expecting to see it at 5% NOT increased!). Almost 8 weeks have passed since last biopsy and the doctors would have liked to have seen Addison's numbers a little more stable or higher. Your bone marrow can be functioning at a decent % before the higher numbers show up in your peripheral blood (CBC) and that is what we need to determine. If her cellularity has dropped we will be starting treatment, if it looks like her body has hit a plateau then we will seek treatment to give her a boost, if her body is improving we continue to watch and wait. We will not have results back until Friday afternoon at the earliest. The sample has to calcify for 24hrs before being reviewed by the pathologist. We will keep you posted and please continue to pray for our darling. Thank you.

Tuesday, September 7, 2010

What a Wonderful Long Weekend

We had a great weekend. We took Addison to the zoo, beach, pool, park and watched Gator football! She enjoyed every minute of her family weekend. Last night Aunt Ashley came over for dinner and she had such a great time showing off for her. She was quite a ham and stayed up till 7:30! She is usually asleep by 7!

She had her weekly CBC this morning at our pediatrician's office. Daddy was able to come to this visit with us for a nice change. Her counts were OK. We can't decide if maybe their machine is slightly off since her last low numbers were on their machine and then fine when we went to the hematologist's office. We will meet with the hematologist Monday morning to flush the port (yuck!) so we will see where her numbers are then.

WBC 3.3 (3.83 last week)
Neutraphils 0.9 (1.16 last week)
HGB 11.4 (10.8 last week) EXCELLENT!
Platelets 37 (47 last week)

We think the WBC is OK, that will fluctuate. It is still lower than normal since normal is above 6. The platelets going back down is what concerns me but it was not a huge decrease so we will wait and see what hematologist says before freaking out too much. :) The red blood is wonderful, 11.4 is a solid number. Normal is 8.9-12.8 so she is perfect! I am holding to that piece of good news for now!

Hope everyone had a wonderful weekend.

Wednesday, September 1, 2010

Not Where I am Suppose to Be!




Addison is officially in the climbing stage! This means more work for mama...yay! Low platelets and climbing don't exactly go well together so I now hover like a helicopter around Addison at ALL times. She will drag her chair close to something she can't get on by herself and use it as a stepping stool. Smart little thing she is....UGH!

Tuesday, August 31, 2010

What a Roller Coaster!

Since June 7th our life has turned into a roller coaster of emotions and unknowns. Last Thursday Addison went in and her CBC showed less than OK counts which had Charles and I both in a panic. After a weekend full of worrying, tears and praying we met with Addison's hematologist Monday morning and to our great surprise Addison's counts were back up to where they had been the past 5 weeks. This means no transfusions or treatment for now!

WBC 3.85
Neutraphil 1.16
HGB 10.9
Platelets 47

The Dr informed us that when someone has mild aplastic anemia their counts can stabilize and then have these random "blips" down but recover back up quickly. They could be due to fighting off a small cold/infection or her bone marrow just needing to rest for a bit since it is working in overdrive. She was initially worried Friday because there should not be a significant drop in the HGB just WBC and platelets. We concluded the drop in the HGB was mainly due to her being extremely hydrated. Your hemaglobin is a concentration of your red blood so if you are super hydrated the concentration could be diluted. We remembered that the day before Addison had the CBC last week she drank a record amount of fluids so that could account for the low HGB. Well on Sunday Addison barely drank anything and then again Monday morning so her HGB was back up. Crazy how little things like that can affect it in such a huge way! The Dr did say that if Addison continues to improve it will be a slow upward trend that will take probably close to a year or longer before back to normal levels. We are happy to wait and avoid treatment! Just means our life will continue to be a roller coaster for quite some time!

Going to work on getting some pics posted of our little lovebug! Thank you for the continued prayers!

Thursday, August 26, 2010

Declining

It has been 5 weeks and 3 days since Addison's last platelet transfusion. She was holding steady around 50 for her platelets for 4 weeks and her WBC and RBC seemed to be improving. I took her in this morning for her weekly CBC and the counts were not great. Everything seemed to dopped.
WBC 2.1 (3.3 last week)
Neutraphil .7 (1.2 last week)
HGB 9.2 (10.8 last week)
platelets 28 (51 last week)

I am not sure what this means except for the fact that I know it is not nearly as good as it was or we were hoping it be. Charles is trying to keep me positive but my heart breaks looking at these numbers. I do not want to think of Addison having to go back into that hospital and have to be pumped full of drugs that will make her feel terrible. I want God to just FIX her without the use of medicine. Is that too much to ask for? Please pray.

Thursday, August 19, 2010

Keeping Steady

I will gladly give up a night's sleep to have good CBC results. I am a nervous reck the day before Addison's CBC. I usually don't sleep because I am so nervous the results will be poor. Well....they were not poor! For the 4th week in a row her counts have slowly increased! There is of course the margin of error which can account for the slight increase/decrease but overall her counts have stabilized and some continue to increase! WOHOO!!! I just wish she was completely better and the worrying could stop but any positive news is GREAT news! So we take what we can get.

WBC 3.3 (slightly down from last week 3.5)
Neutraphil 1.2 (1.1 last thursday)
HGB 10.8 (9.8 last week...HUGE increase!)
platelets 51 (50 last week)

Thank you for your continued prayers....they are extremely powerful!

Monday, August 16, 2010

Vaction to Reality

We had a wonderful vacation. We definitely needed the week away and Addison enjoyed every minute of it. She was a ham the whole time and showed off for pretty much anyone willing to watch! She fit in with all the kids at the pirate ship pool even if they were twelve! She had absolutely NO fear! She liked the boat but she hated her life jacket so her one ride on the boat was short lived. She was fascinated by the jumping dolphins and the tricks they did and all the fish swimming around the dock. She even got to play at the pool with her friend Katie (from Vero but they just moved to Tampa same time we did and were vacationing in the Keys too).

After what should have been a 6 hour drive but took 8 we were home Wednesday evening. Addison was thrilled to be back in her home surroundings and literally took every toy of hers and piled them in the middle of her playroom. I think she was taking inventory to make sure nothing was missing! So sweet!

Addison started showing signs of petechia on her belly and legs Thursday morning so I had a CBC run at our pediatricians. I wanted to be able to order platelets for first thing Friday morning so that we wouldn't have to spend our entire Friday at the hematologist office. Her counts had risen except for her RBC which actually dropped slightly. Apparently vaca was good for Addy's body. :)
WBC 3.5 (2.9 10 days prior)
Neutraphil 1.1 (1.0 prior)
RBC 9.8 (10.0 prior)
Platelets 50 (48 prior)

We went to the hematologist Friday morning because they had to access the port. It has to be flushed once a month and as hard as it is to believe it has been a month since it was placed and has not needed to be used! They ran a CBC at their office which was nice for me to be able to compare numbers of each machine.
WBC 3.73
Neutraphil 1.11
RBC 9.9
Platelets 46

Her counts were good. I was not happy with the drop in platelets but she has been keeping them steady around 48 for about two weeks which is great. It would be wonderful if they would start to creep up but our Dr. told us that Addison is not out of the woods yet and she wouldn't be surprised if all her counts started to drop again. Her opinion is that they won't but we should mentally prepare for the possibility. UGH! Accessing the port was a miserable experience. I thought it would be better than inserting an IV but I was wrong! It was terrible and it left both Addison and myself in tears. I cried the whole way home. I know life isn't fair but after having a wonderful week away from reality it is hard to come home and face this and watch your daughter have to go through these things none of us understand. We continue to stay positive and pray for a complete recovery and we are so thankful she has improved as much as she has without the use of treatment.

Sunday, August 8, 2010

VACATION!!!!!

Addison and I left Vero Thursday morning at 8:30 and it took us about 5 hours to make it to Duck Key by the time we stopped for potty breaks and lunch with Great Aunt Clare (my aunt)! We taught Addison how to say vacation before we left and she could feel the excitement of what was about to come. She was dancing and jumping around the house as giddy as can be! When we got to Hawk's Kay my friend Lauren and her daughter Iannica got in our car to drive up to the front to check in. Addison and Iannica held hands on the way and Addison was beside herself! The picture is above. SO CUTE!

Our Villa was not clean by my standards so we cleaned it from top to bottom just to be safe there weren't any lurking germs hanging around. So far Addison seems to be feeling great and sleeping great. No unusual bruising so things are wonderful!

There is a pool with about a foot and half of water in it and a huge pirate ship with slides. Addison LOVES it. It is so much fun. I posted pictures above. We will keep you posted on more fun times. Addison's friend Katie should be arriving today so we look forward to some pool playdates.

Friday, August 6, 2010

Tuesday, August 3, 2010

The Power of Prayer

First I have to THANK everyone for your continuous prayers. I know Addison has many many prayers being said daily for her recovery and she is on numerous prayer lists around the world (literally). Without these prayers we would not have had the CBC results we did today. Addison's WBC was 2.9 (1.9 Friday) with neutraphils being 1000 (highest they have been since late May), RBC 10.0 (they were 9.3 for past 2 weeks) and her platelets remained unchanged at 48 (this is good that they did not decrease...her body might be leveling out and platelets are the last thing to increase).

Those results are not back into normal range (red blood is in the low range of normal) but they are steadily increasing which is all we want! We pray and pray and pray everyday for them to continue to rise to normal levels so that Addison can go back to enjoying her life like a normal 16 month old can! We are so grateful and now we are on our way to vacation in the Keys! I think we all need a little relaxation and something to get our mind off of everything! Today is 15 days since her last platelets transfusion! Hopefully she will not need another one ever again (except to get surgery to remove her port!) :)

Friday, July 30, 2010

Friday CBC

Addison had her blood taken this morning at our pediatrician's office and these were her numbers:
WBC 1.9 (lowest they have been)
ANC 600 (good that her neutraphils are staying above 500)
RBC 9.3 (same as Monday in normal range)
Platelets 48 (pretty good since it has been 11 days since transfusion)

I was worried about her WBC since that is the lowest they have EVER been but the Dr said they care more about her ANC than her WBC number. I will take that as good news then. They were very happy Addy's platelets hadn't dropped below 20 meaning she will go over 2 weeks not needing a transfusion (Monday will be 2 weeks and we are getting next CBC Tuesday)! This is very exciting seeing that 10 days was the longest prior to this. The longer and longer between transfusions can only be good news!

Hope everyone has a wonderful weekend.

Thursday, July 29, 2010

This is What a Playdate at the Pool Does to Addison!




Do you think she could look any happier? We had a playdate with our Stroller Stride friends, Avery, Tucker and Quinn at the pool. Mommy had fun learning how to socialize again! Our playdate was cut short by a thunderstorm (welcome to Florida in the summer) but Addison came home and slept almost TWO HOURS! We all know that is VERY impressive for miss Addison especially since she took a 45 minute nap this morning. Hope this means her WBC count will be nice and elevated tomorrow morning! And that she still sleeps her 12 hour stint tonight!


Wednesday, July 28, 2010

Genetic Test Results

Dr. Kelly asked her nurse to call me yesterday to tell me the genetic testing of the bone marrow had come back. She was so excited to report that is was perfectly normal!!! Wohoo!!! That was the last big test we were waiting for. (well now the peds AA specialist has added two more tests to the plan but our Dr here is not that concerned about them....we will still get them done next week and then officially done with testing and true AA diagnosis).

We LOVE good news! We pray it continues to only get better from here.

Monday, July 26, 2010

Monday Update-Pics Below!

Addison and I went to Vero Thursday to help mom and dad get ready for Clare's 30th birthday party! Everything turned out great! The party was a huge success and I think my sister really had a fabulous time. My Aunt Cheryl flew in from Colorado and my Aunt Denise and cousin Victoria came over Thursday night to help as well. We had a lot of fun picking on each other while we cleaned and prepared for the party. Addison really took a liking to my cousin Victoria. This is great news because she is officially hired as our travel babysitter whenever she doesn't have school! :)

We took Addison to get a CBC this morning at our pediatrician's office and her counts were OK. Her WBC was the same at 2.4, RBC at 9.4, Platelets at 66 (highest it has been after 7 days), ANC 700 (highest it has been). These are good things but not back to normal limits. I went to meet with our hematologist at 2:30 today. We reviewed the biopsy and went over the 2nd opinion from the pediatrician hematologist specializing in Aplastic Anemia. He did agree it looks like aplastic anemia but he wants to do two more specific genetic tests to confirm aplastic anemia. The biopsy showed production of blood but we do not have a quantitative number. The Dr did say she has moderate aplastic anemia (she was borderline severe before) but her body is showing signs of repair. This could take her months if not years to get completely back to normal. As long as her CBC numbers do not decline we will not have to do treatment. If they start to decline we will repeat a biopsy and start treatment immediately.

We are hoping we can hold off a platelet transfusion to next Tuesday or Wed so that we can take Addison to the keys for a few days! Wohooo! I cannot wait to see how much fun she has playing in the pirate ship pool down there. Dr Said if her nuetraphil count stays above 500 she can swim in the pools down there! Enjoy the slideshow below! Please keep Addison in your prayers. Thank you!

Thursday, July 22, 2010

Exciting News!

We received a call from the nurse yesterday to report the biopsy findings. She said the specimen was "less than perfect" meaning the Dr who drew it didn't get enough to make the pathologist happy. BUT good news is what he was able to see was that her bone marrow is starting to function more than it was 5 weeks ago! Her cellularity was around 10-15% 5 weeks ago and now it is over 25%. They classified it as moderate which I believe means she is no longer severe aplastic anemic. Also the cells all appeared normal in size and shape and no leukemia blasts were present! WOHOOOOOOOOOO!!! The Lord is answering our prayers.

The Dr cancelled treatment for now to observe Addison a little longer to see if she will heal completely on her own. We are still seeking a second opinion but at least we can rest a little easier at night know her strong little body is fighting hard to get back to normal. She is still not better but looks like we are on the right path. I am not sure if this even a normal occurrence or one of God's many miracle's?! We will find out more Monday when we meet with Dr. face to face and go over results and plan of action.

We continue to pray and ask for your prayers for a complete recovery of Addison. You all are greatly appreciated!

Tuesday, July 20, 2010

Rough Start...Good Ending

I am not even sure where to begin just know this will be a LONG post.

Let's go back to Thursday of last week. We went to our pediatrician's office Thursday to get a CBC instead of the Tampa clinic. Well her CBC showed her HGB at 9.4 (was 8.6 Tues) and her platelets were 51 (this is after a week)! Also her ANC was 600 (anything under 500 classifies her as Severe Aplastic Anemia and 2 weeks ago it was at a 30). I tried my hardest not to get too excited since this was a different machine then we typically use and I was just happy this meant we could get out of Tampa for the weekend and go to Vero. I couldn't however not think that this meant Addison was producing some blood since no matter what machine she had a CBC on, it could not be that significant of a difference. Well Monday when we got to clinic before going to the hospital they ran a CBC and her HGB was 9.1 and her platelets were 31 (still really good for being 10 days since transfusion) and her ANC was 490. so this confirmed that machine at our pediatrician's office was not too far off. Our Dr said it was interesting that her red blood had jumped up and usually you only see a steady decline with AA until the next transfusion. I am optimistic!

We got to the hospital around noon and checked in, ate lunch, then went up stairs to our room to get the ball rolling on the platelet transfusion (plump her up for surgery.) We also asked the nurse if we needed to do a blood type cross exam to get a red blood band for Addy that she HAS to have to go in the OR. She told us they didn't need it. So we got the IV and then platelets took about 3 hours to transfuse.

The nurses change shift around 7:30-8:00 so while we were waiting Addison went on a date with Maverick (the little boy we met last time who is 2 weeks younger than Addy and simply adorable). They were each in their red wagons and Monique and I pulled them around the halls. We parked them by the big window to watch the planes land and take off. Well Addison decided she wanted out of her wagon so she could twirl for Maverick and make funny faces. Then she said "Poop Poop!" while smiling this huge cheesy smile and all of sudden she let one rip! SO loud and stinky! It was gross but hilarious! Then she snuck behind my chair and actually pooped. What a great impression for her first date. The date ended because she smelled so bad I had to change her! Guess I don't have a little lady on my hands after all! So funny....

When the night time nurse came on Addison's vitals were good so I told them we were not allowing the hospital rule of "vitals must be taken every 4 hours". Addison gets platelets every week and then goes home to sleep and I do not check her vitals every 4 hours. Ugh! So she did tell me Addison would need to be hooked up to fluids at midnight to be hydrated for surgery. OK, that was fair enough. We gave the OK. Well at 4am the nurse with the phlebotomist came in to draw blood. Guess what for?! The blood cross! Oh we were pissed (sorry not ladylike)! Charles let them have it too. Don't you think if we didn't want vitals done at 8, 12 and 4am we sure as heck don't want a darn needle stuck in Addison's arm? Only common sense one would think. Well Charles insisted they find a way to draw from the IV (which never works once fluids have been pumped through it) because we were not allowing them to stick her again. By the grace of God it worked and they got what they needed out of the IV. It was still a very rude awakening for all 3 of us and Addison refused to go back to sleep until about 6:45am and she slept until 8:30. I think I slept a total of maybe 3 hours the whole night.

So we all got up at 8:30 and got ready to go down to pre-op. The O.R. was suppose to be scheduled for 9am. We were in pre-op until 10:30 before the anesthesiologist came in to do his thing. For the last BM Biopsy the departure of Addison from my arms to the nurse was extremely traumatic (OK more for me than anyone else). She screamed "Mama" the whole way down the corridor with the nurse. I cry just thinking about it. So the Dr offered a little cocktail much like Valium to give to Addison before we transitioned to the nurses to calm her down. Well he gave her something. I was holding her while they administered and almost instantaneously she started acting a bit woozy. Then out of no where she looked at Clare and I, her eyes got huge and she had no idea who we were and she was scared to death. She began screaming bloody murder and her face changed colors. I honestly cannot even describe her reaction. She acted as if she was losing her life or she thought demons were coming after her. My mom and I started screaming and crying for help and my sister went out into the hallway yelling for help. I can promise you this was the scariest moment of my life. The Dr stood there while this happened not reacting at all, like he was shocked out of his pants that this happened. I had given Addison to Charles since she looked at me like I had 10 heads and he was able to calm her down and then she entered a state of euphoria. I of course was already a wreck and reliving the look in her face over and over and over. It will haunt me, it was terrible.

The nurses sent Charles and I to a consult room to wait on the surgeon that was inserting the port. It was a long 45 minutes to wait. Charles got bored and saw this thing down near the ground in the wall. He decided to touch it. Soon after two security guards rushed in...he hit the alarm! You would have thought a 5 year old was in the room....nope! Just Charles acting like he is 5 and me sitting there sobbing! What a great pair! Finally the surgeon came in and said the port placement went smoothly and we were just waiting on the biopsy and aspiration to be completed.

So it happened. It actually happened. Addison got a port. This is still so crazy to us all. After Addy recovered from the procedures we fed her lunch. It had been about 19 hours since she had eaten. She chugged a Gatorade and a juice box to show the nurse she was ready for solids! Then she ate a huge lunch! We don't call her chunkalicious for nothing! Our hematologist came in and said that the preliminary workup of the aspiration looked clean (no abnormal shapes or sizes) and no leukemia blasts. It also said there was moderate cells (last time it said very rare when looking for blood cells). So this is a good thing...maybe! dr. said lets wait for actual biopsy results which will tell us % of cell production. Last time it was around 15% cell production....we are praying for higher which could mean she is fixing herself. The Dr. was surprised by Addison holding platelets longer each week then previous weeks, her HGB has increased and they looked at her retic counts (retic are the new red blood cells..she has been at 0 or .5 consistently) and it was 2.3%. This is high which is good! And her platelets this morning were 298,000!!! Highest they have ever been after transfusion and she only 6 units! Might mean her body is trying to replenish them. Will know more when biopsy is back.

We are finally home now. It was a LONG 24 hours and we are all exhausted. Addison seems to be in good spirits and she ate a great dinner. She was sound asleep by 7:15 so I am hoping for a good night sleep as well.

Tuesday, July 13, 2010

So Much to Update On

We were able to escape reality for a few days and enjoy a wonderful weekend. Mimi came over and surprised Addison with a trip to Clearwater beach Friday afternoon. Addison absolutely LOVED it! We dug her a little pool and she sat there digging and enjoying the water the whole time. Addison figured out that if she put her back to the waves they didn't splash her face. Smart little cookie she is! Teh good thing about the Gulf is the waves are tiny ripples. Then our friend's Andrew and Lynn came by to see us from Jacksonville. They had a wedding in St. Pete this past weekend so we were able to have dinner Friday night with them. It was great being able to catch up and here about their wedding plans.

Saturday we woke up and played at home and after Addison's morning nap we packed a picnic lunch and went to Honeymoon Island State Park beach for the afternoon. It was fabulous. Addison was much more active this trip. She would not stay still. She would run into the water, then go dig a few holes then go up to the soft sand to feel it between her toes and then she would check out the big girl's hole that was next to us. It was a constant game of follow Addison! She zonked out the second she hit the car seat for over an hour. We all know that is a LONG nap for Miss Addy.

Sunday we woke up and went to Orlando to get our new car! We are very excited to no longer have the Mercedes. We got a new small SUV that I will be driving!!! So excited! Happy Late Birthday To ME! We had a yummy lunch at our friend's Kristin and Sean's in Orlando to let Addy stretch her legs and play a little before heading back to Tampa. Then we went to our friend's the Bergin's house for dinner and Addison got to swim in their pool with Brooke (3) and Brianna (1). Since Addison watched Brooke swim all by herself Addison of course thought she could do it too....um not so much Addy. She loved going under water! The Caldwell's were there too with their adorable 6 week old Campbell. It was a GREAT weekend and Addison loved all the action.

So back to reality...we met with the surgeon Monday. Nothing really too exciting to report. Addison is scheduled to get her port Tuesday July 20th. We have to go to the hospital Monday for Addison to get platelets to be able to make it through the surgery and we will stay Monday night and hopefully leave after the port and biopsy are completed. I had no idea that a port could stay in for like 5 years. Obviously Addison is at an age for rapid growth so hers will have to be removed in at least a year but I am hoping for MUCH sooner than that. If you don't know what a port is google "mediport" and it will show you what it is.

We met with the hematologist this morning. Guy and Reva came down to go with Addison and I since Charles had to be in Naples for meetings. Today was the day we were getting the PNH test result back from Mayo that had been abnormal twice before. Well it was NORMAL!!!!!!!!!!!!!!! Praise the Lord we got some good news! I am so relieved that she does not have PNH, it really is such a blessing. We have tentatively scheduled treatment to start Monday July 26th. We have to confirm the cells that are in her bone marrow are not odd in shape or size which could indicate MDS or Leukemia before moving forward. Again we are praying everyday, all day that it still looks clean but "empty" confirming the diagnosis as Severe Aplastic Anemia and we can be on the road to recovery. It is nice to finally have a plan in place but we continue to ask for prayers for speedy and complete recovery. We are ready to have our life back and more importantly let Addison start living her life to the fullest again! Thank you for the prayers and support, they seem to be helping tremendously!

ps...Charles keeps complaining my posts are too long.....????? I have to be thorough right?

Thursday, July 8, 2010

Good bye baby days...hello toddler years!




Can you believe Addison is already 15 months old?! I can't! We had Addison's 15 month wellness visit yesterday with her new pediatrician here in Tampa. I have looked forward to all her wellness visits in the past because Addy had never gone to the Dr for anything but her wellness visits until recently. I love seeing where she is in her height, weight and having the Dr confirm my suspicion that she is perfect! :) Well this visit was a little different then previous ones since we had to fill the Dr in on her status with Aplastic Anemia and we also bypassed vaccinations (didn't mind that one bit). Addison was 32.5 inches tall (96% percentile) and she weighed 24 lbs 8oz (76% percentile). Our little love bug is growing like a weed! She also has 10 teeth and two about to pop out any day now. Fingers beware! Toward the end of the appointment Addison started reaching for the doctor. She literally lunged forward out of my arms for Dr. Allison to hold her. Not once but twice! They say kids have a good instinct about people and Addy loves her new pediatrician so that is comforting to us. Dr. Allison said Addison is above average on everything and she does not anticipate any of the treatments to hold her back. She might become a little quiet or more reserved after the port and treatment because this is a traumatic experience but she is optimistic that Addy should be OK with her development.

Some fun new things that Addison does now are (sorry if I have posted these before): she tells EVERYONE when she is going to poop! Pretty exciting unless we are in public and she yells "poop! poop!" until we acknowledge her! Sometimes it is just a false alarm and all she does is toot but at least she is becoming familiar with the "feeling". She LOVES to color. She will pick up a book and pretend to read it by babbling nonstop and turning pages, she really likes doing that with mommy or daddy's books. Last night she did it with her shampoo bottle in the bath. She has a book of 100 first words and she can point out every single thing in there if you ask her where they are! She is so proud of herself she claps when all done. She can point to some and say them on her own too but not all 100 of them! She is starting to recognize the alphabet. Her favorite letters are A, E, M, P and O. When she sees these letters she will point and say them. So stinkin adorable! She has always been a big dancer but she has added twirling into her routine. She will twirl and twirl and twirl until she falls down because she is so dizzy! Such a girl. If Charles or I are sitting on the floor Addy comes and wraps her arms around our neck and says repeatedly "piggy! piggy! piggy!" until we get up and give her a great piggy back ride. She does not settle for a 2 second one either. :) Last thing I am going to brag about is her vocabulary! We are just so proud of her. She is getting so good at speaking. She pointed to a picture of broccoli a couple weeks ago and said broccoli! Too bad she won't touch the stuff but at least she knows how to say it.

Doesn't it make you feel better knowing that she is still a normal active adorable little girl even if this Aplastic Anemia is trying to attack her! She just won't stand for it slowing her down and we like it like that!

Tuesday, July 6, 2010

Tuesday Dr Update

I should probably wait a few hours to let myself digest everything before updating the blog but A.) I don't think I will be any less confused in a few hours and B.) I run the risk of not remembering accurately.

Addison and I got to the Dr office this morning at 8:15. I was determined to be the first one there to hopefully minimize our wait time. I was definitely first, I had to turn the lights on in the office! Why they schedule appointments before they are ready to work is beyond me! We were checked in quickly but then waited for at least 30 minutes until we were sent to a room. They pricked Addy's toe for the CBC which is routine to check her counts. The nurse came back in and said her platelets were a 25!!! "A 25?!" I said. This is very odd to me since she only received 6 units of platelets last Tuesday which is 3 less than the week before and last week after a week her platelets were an 11. Of course my heart fluttered with a new sense of hope. Then I looked at her Absolute Neutrophil Count and that was 390!!!!! 2 weeks ago it was 30 and last Monday it was 90 and Tuesday it was 70. Charles and I asked the Dr last week if we should get excited and she said no not with such a low increase but she said if it was over 200 then she might get excited....well today it was OVER 200 at nearly 400!!!! OK so before I get my hopes completely up that maybe God is just curing her with one of his miracles the Dr comes in and tells me not to get too excited. Boo....how can I not? This is a new Dr whom I have never met so she doesn't know Addison's case really well. I keep wishing our normal Dr would have been there because maybe she would have had the same hope as me! Then she lays on the not so good news...the PNH test which was abnormal last time came back abnormal AGAIN. This time the abnormal parts were reversed. The first time her RBC looked normal and the WBC were slightly abnormal...this time it was opposite. The Drs do not know what to make of it so they decided to draw the blood again. Yes this is the 3rd time they are drawing two vials of blood for this test. So the knot quickly returned to my stomach as we have to wait yet another week to know if she has acquired this terrible blood disorder that will never fully go away if she has it and has extremely high chances of turning to cancer later in life. So back to praying for God's miracle to heel my baby girl.
The Dr also gave me the treatment info which we would have started this week if that test was completely negative. The treatment for PNH is completely different than just Aplastic Anemia so we need conclusive test results before moving forward. She also gave me a prescription to meet with the surgeons to better understand the port. I am really not happy about this port. They have to cut through chest muscles which will make poor Addison very sore for a few days when she moves her arm. The good thing is they won't hopefully have to poke her veins anymore. They also confirmed that when she in under for the port insertion they will also do a bone marrow biopsy to check cellular production and run some additional genetic tests on the actual marrow. Apparently that is normal procedure when you have Aplastic Anemia. My guess would be that since it is such a newly discovered blood disorder they check genetics on every case they see to see if they can uncover some type of genetic makeup behind the disease. Again...I am no Dr but that is my interpretation.
So three hours later and 6 vials of blood later we got to go home. Addison was so tired she fell asleep the second her bottom hit the carseat. We are home now and have a full day of playing ahead of us! Lots of love to everyone and please continue your prayers. We greatly appreciate all of them!

Monday, July 5, 2010

Happy 4th of July


I don't know if everyone has been watching the weather channel but there is a huge green/yellow/and red mass hovering over Tampa and it has been here since Friday. So needless to say we have been inside ALL weekend watching it rain. We had plans to take Addison to the beach since we have not been on the West coast yet and the Dr said it was OK to go. That didn't happen. We had our friends over yesterday and they brought their 4 week old son Campbell. SO cute!!! He got fussy and Charles held him to give Lindsey and Campbell a break and he cuddled up and went right to sleep. Charles was so proud of himself. Addison let baby Cam use her baby rocking swing. She was not happy to share at first but once Cam went to sleep in it Addy kept checking on him and putting her finger over her mouth telling all of us to Shhh. Then she would touch his little toes. So sweet! She did really good for her first time being around a baby.


Here is a funny mommy lesson I learned today! I happen to look under the stove while I was sweeping the kitchen and I noticed a gift card under it. I keep a black wallet thing that is filled with all of my gift cards in Addison's diaper bag. Addison loves to play with them. I went to look at it and it was EMPTY (usually has like 15 or 20 in it)! Charles moved the stove and there were 5 under there and a few in Addison's purse in her playroom. That will no longer be a toy for her to play with!


Hope everyone had a great holiday! We go to the Dr tomorrow morning at 8:30 and will have to go back in the afternoon for platelets. :( Will update tomorrow sometime.