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.
Friday, July 30, 2010
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.
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!
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!
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!
Wednesday, July 21, 2010
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.
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?
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!
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!
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.
Sunday, July 4, 2010
Officially in my Late Twenties
I turned 27 Thursday. I remember my fabulous sister-in-law telling me years ago that 27 was the age she really started noticing her body was aging. Great! Thanks Char Char. Honestly now that I have a child my birthdays are really just another day. I had a much harder time dealing with Addison's 1st birthday than my own and that is OK with me! I did have a very nice day. Charles had to be in Orlando VERY early in the morning so he woke up at 4:45 which means I woke up at that time too. Boo. After about 4 cups of coffee I spent my day with a very beautiful, sweet, loving and funny princess! We had tea parties with her magical stuffed animals and read book after book! It was wonderful. Then Mimi came over to watch Addy so I could go get my hair done (a favorite thing of mine to do!). Then Charles returned from Orlando and we went to a nice Steakhouse with our good friend's Clint and Jenn. It was an over priced delicious dinner! It was just nice to see them again. They just moved to Tampa from Vero too and their little girl Katie is 6 weeks older than Addy but she goes to daycare so we have not really gotten to see them since Addy's immune system is so fragile.
The weather yesterday was horrible! It rained from sun up to sun down. I am hoping to see the sun a bit today to help us celebrate the 4th of July!!! Happy Fourth of July!!! Our friends Campbell, Lindsay and their new 4 week old Campbell the 3rd are coming over to grill out on Charles's new grill! We figure Addy and Baby Cam will not being sharing toys and they are so aware of germs being around baby Cam that Addy should remain germ-free! And mommy and daddy get some more social time! Wohoo! We got Addison some crayons and coloring books and she LOVES to color! She is so proud of her finished product and she feels so important carrying around her crayons for hours. (we all know that will stop the minute she puts that crayon to my wall!) :)
Also, our brother-in-law Corey got a HUGE promotion!!! He is now the principal of his high school in Jax. He is only 30 years old and a principal!!! How awesome is that?! Charles wanted to know if he could be a guest speaker at his school one day! Typical Charles.
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