Yes...I'm here AND I'm blogging from a computer!!!! WHAT?! The very first time! I wasn't even sure how to log in. ha. Anyway...what does that tell you...? It tells you that I'm spending LESS time at the doctors office! WOOHOO!!
The steroids are doing their thang! The other day Mavy's platelets where 229,000. I did NOT type that wrong...can you believe it?! I couldn't...well above normal! I just wanted to hug the doctor. I was really worried because I've had the hardest time getting the medicine into him. Twice a day and I dread it every hour leading up. He hates it and I hate it. Everyone hates it. I have to give him two different meds and the first few times I swear not a drop stayed in his mouth. So I had to google a way to give meds and keep the babby from spitting them out! I literally have to hold the poor boy in an arm lock and use my finger to hold his cheek open until he swallows. I feel like I'm abusing him!!! but after that number...I know it's all worth it. So now (again) we wait. He did week 1 at a high dose morning and night. Week 2 has been a high dose in the am and a lower dose (not by much) in the evening. Each week should be less and less until he is done and then we hope and pray some more that the numbers stay up!
Ok...I have to get back to work while I can!
Wednesday, April 25, 2012
Wednesday, April 18, 2012
50% of my brood is down!
Good grief! I seriously need one of those space man suits from the movie ET. Actually. I need 6. 4 of them half size.
Mahala is sick. 102 temp and I'm trying to remain calm. Not let her see I'm panicked. Although I slipped when I took her temp and 20 seconds later yelled...dear lord!!! Your sick!!! Go get a book and lay on the sofa in the front room. Daddy has to take you to the doctor. Then she asked...are you sending me away because of maverick?!? I didn't know if I wanted to laugh or cry but when she and I met eyes we both cracked up for some reason. I told her yes. That was exactly why and she could never come back. She chuckled and said. K. Love you too mom.... :) Don't they say laughter is the best medicine anyway? Your contagious before you seem sick mostly so at this point...what's the point!! I just keep telling myself...it's fine. Just keep them a part. However. It's really hard to give each sick baby the loves and cuddles without feeling the need to sanitize your entire body in between.
They tested her for strep and flu both negative but treated her anyway because of Mav. So at 9:30 last night I'm sitting at the kitchen counter with her and a bowl of soup. I pull the medicine out of the bag and it's pills!! She has never taken pills! Coco has but not M. I gave the bottle a lil shake and her head flew up from her soup bowl...WHAT!! Pills?!? I say yes. You can do it...! I take one out and lay it on the counter for her and crack open a bottle of water. She picked it up and looked it over and says, are you SURE this is right? They didn't mess up?? I don't wanna end up like Michael Jackson mommy! Martin assured her that he did not die from antibiotics... (that's one for the memory jar though). She did it just fine and is sleeping peacefully. Now I have to figure out how to keep her in her room as much as possible...!
At least we had a great day on her field trip before fever struck!
Mahala is sick. 102 temp and I'm trying to remain calm. Not let her see I'm panicked. Although I slipped when I took her temp and 20 seconds later yelled...dear lord!!! Your sick!!! Go get a book and lay on the sofa in the front room. Daddy has to take you to the doctor. Then she asked...are you sending me away because of maverick?!? I didn't know if I wanted to laugh or cry but when she and I met eyes we both cracked up for some reason. I told her yes. That was exactly why and she could never come back. She chuckled and said. K. Love you too mom.... :) Don't they say laughter is the best medicine anyway? Your contagious before you seem sick mostly so at this point...what's the point!! I just keep telling myself...it's fine. Just keep them a part. However. It's really hard to give each sick baby the loves and cuddles without feeling the need to sanitize your entire body in between.
They tested her for strep and flu both negative but treated her anyway because of Mav. So at 9:30 last night I'm sitting at the kitchen counter with her and a bowl of soup. I pull the medicine out of the bag and it's pills!! She has never taken pills! Coco has but not M. I gave the bottle a lil shake and her head flew up from her soup bowl...WHAT!! Pills?!? I say yes. You can do it...! I take one out and lay it on the counter for her and crack open a bottle of water. She picked it up and looked it over and says, are you SURE this is right? They didn't mess up?? I don't wanna end up like Michael Jackson mommy! Martin assured her that he did not die from antibiotics... (that's one for the memory jar though). She did it just fine and is sleeping peacefully. Now I have to figure out how to keep her in her room as much as possible...!
At least we had a great day on her field trip before fever struck!
Sunday, April 15, 2012
A Sunday blessing.
Today has been insane and it's not even over. I had 4 sessions. Yes. A full work day. I can't remember the last time a day wasn't broken in half for a trip to fairfax to draw blood.
We started the steroids yesterday. I delayed it a day because I'm a big ol whimp and I don't know if it's from that or what but he is a cranky boy. Doesn't want to sleep unless it's while nursing. So on top of 4 sessions I think I've had 12-14 nursing sessions already AND it's sweet little Solana's 3rd birthday. We are heading to the Japanese steakhouse for birthday dinner now. With everything going on her birthday snuck right up on me. I feel so unprepared. However I'm hoping at 3 she won't notice. Dinner and presents...we did manage to pull together at least. We bought her a bike and doctors kit. I'm fully expecting her to run over one of her sisters just to play doctor.
In between all the madness today the awesome immunologist that we met on Friday took the time to call me. On a Sunday! The panel of tests he ran on Mavy's immune system all came back perfectly normal. That means that now we've been told that his bone marrow AND immune system are all in healthy working order!!! He said that he doesn't think this is any sort of autoimmune disorder and that he thinks all this will resolve itself eventually and the steroids will help keep him stable in the mean time. I'm so excited to hear this news and so scared to believe it too. I feel like every time we've gotten good news it's always followed with some bad. I asked him why is Mav so neutropenic (low white cells that fight infection) because if he only has ITP that isn't something ITP causes. He asked me when his neutrophils started to drop. I said on the march 14 blood count. The day AFTER his first IVIG treatment and he said ah yes. I've seen some studies where dropping neutrophils were a reaction to IVIG! Hearing that made me feel so much better. I hope he's right...
We started the steroids yesterday. I delayed it a day because I'm a big ol whimp and I don't know if it's from that or what but he is a cranky boy. Doesn't want to sleep unless it's while nursing. So on top of 4 sessions I think I've had 12-14 nursing sessions already AND it's sweet little Solana's 3rd birthday. We are heading to the Japanese steakhouse for birthday dinner now. With everything going on her birthday snuck right up on me. I feel so unprepared. However I'm hoping at 3 she won't notice. Dinner and presents...we did manage to pull together at least. We bought her a bike and doctors kit. I'm fully expecting her to run over one of her sisters just to play doctor.
In between all the madness today the awesome immunologist that we met on Friday took the time to call me. On a Sunday! The panel of tests he ran on Mavy's immune system all came back perfectly normal. That means that now we've been told that his bone marrow AND immune system are all in healthy working order!!! He said that he doesn't think this is any sort of autoimmune disorder and that he thinks all this will resolve itself eventually and the steroids will help keep him stable in the mean time. I'm so excited to hear this news and so scared to believe it too. I feel like every time we've gotten good news it's always followed with some bad. I asked him why is Mav so neutropenic (low white cells that fight infection) because if he only has ITP that isn't something ITP causes. He asked me when his neutrophils started to drop. I said on the march 14 blood count. The day AFTER his first IVIG treatment and he said ah yes. I've seen some studies where dropping neutrophils were a reaction to IVIG! Hearing that made me feel so much better. I hope he's right...
Friday, April 13, 2012
Today is the day.
Today is the day that we agreed to start steroids. I guess we didn't hold out very long. I talked to 4 different doctors about this before deciding. A hematologist, an immunologist and 2 pediatricians. Everyone told me the same thing, that this was the next best step and that babies do very well with them. They are hoping that he won't need them any longer then a month and the all the side effects like bone weakness ect mainly happen with people on them for a lot longer. So, here we go.
The first week will be a higher dose and then it will drop each week. His platelets dropped to 41,000 today. That's a drop of 43,000 in 8 days. Atleast this is a medicine I can do at home. The thought of another trip to the sedation unit and another IV treatment makes me nauseous... This also eliminates the risk of getting sick at the hospital, infections...ect. Less office visits... I'm still trying to convince myself we made the right choice, can you tell?!
His ANC level did go from 240-1400!!!! That was AMAZING news! It figures it would go up on the day we meet with a new specialist, an immunologist for that exact thing. Either way. We were very pleased with the idea of a second look and set of ideas on Mavy Man. They drew more blood and are going to look deeper into his immune system and how it's functioning since typically ITP does not bother the white cell count.
So...it was a long day of doctors! I did manage to get the final family passport!!! Woohoo!!! I pray PRAY PRAYYY Mavy is well enough to make this trip in June. It will absolutely crush the girls to cancel the cruise to Alaska. Mahala has asked me 10 times already if we can still go. I'm already trying to figure out how to keep a mask on a 6 month olds face on the plane ride...I don't see that happening. :( I can't think that far ahead right now. I need to only think about tonight. I'm going to need all my energy to actually give my tiny baby his first dose of steroids :(
The first week will be a higher dose and then it will drop each week. His platelets dropped to 41,000 today. That's a drop of 43,000 in 8 days. Atleast this is a medicine I can do at home. The thought of another trip to the sedation unit and another IV treatment makes me nauseous... This also eliminates the risk of getting sick at the hospital, infections...ect. Less office visits... I'm still trying to convince myself we made the right choice, can you tell?!
His ANC level did go from 240-1400!!!! That was AMAZING news! It figures it would go up on the day we meet with a new specialist, an immunologist for that exact thing. Either way. We were very pleased with the idea of a second look and set of ideas on Mavy Man. They drew more blood and are going to look deeper into his immune system and how it's functioning since typically ITP does not bother the white cell count.
So...it was a long day of doctors! I did manage to get the final family passport!!! Woohoo!!! I pray PRAY PRAYYY Mavy is well enough to make this trip in June. It will absolutely crush the girls to cancel the cruise to Alaska. Mahala has asked me 10 times already if we can still go. I'm already trying to figure out how to keep a mask on a 6 month olds face on the plane ride...I don't see that happening. :( I can't think that far ahead right now. I need to only think about tonight. I'm going to need all my energy to actually give my tiny baby his first dose of steroids :(
Tuesday, April 10, 2012
Big words...big words...big words.
I swear. If you looked at my iPhone google history you would think I was a pre-med student or something!
Today we took maverick back to the hematologist. In 5 days his platelets dropped from 84,000 to 54,000. What a depressing appointment!:( if that wasn't enough his neutrophils dropped even lower.
Anything below 1000/1500 is considered Neutropenia. Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low count of neutrophils, white blood cells that help your immune system fight off infections.
Maverick's number: 270 :( putting him in the severely low category.
The doctor gave us the option to start steroids and we declined. As a parent with a sick baby I feel like there is no right answer. I feel like all day everyday I pray and hope they just give him something to make it all go away and then when they actually give me a drug and tell me all the darn side effects...I don't want it. It won't "fix him" (from what I understand it will help the platelets but not the white cells) and the dosage with his age sounds like a guessing game and the side effects sound way worse than where we are right now. There's even meds for the side effects of the steroids....
So. We said no. The doctor said that was fine for now.
So with all that said he mentioned the words "evans syndrome" and I'm pretty sure I didn't hear anything after that. Yeah. He said its too early to diagnose him as Evans but we can't rule it out. Well...WHY THE HECK DID YOU MENTION IT????
I have read about Evans and it scares the CRAP out of me. It's a rare autoimmune disorder in which the body makes antibodies that destroy the red blood cells, platelets and white blood cells for no reason. Forever. No cure. Most treatments don't even offer complete relief. I can't even imagine. I know I'm getting ahead of myself but it's what I do. I prepare for the worst and hope for the best.
With every pregnancy I always had the fear that I wouldn't be able to devote enough time to each of my amazing little babies when the new one arrived. I feared that they would feel less loved and important and resent me or the baby. Since maverick has been sick I've seen that come true in so many ways. I know it's not my fault and can't be helped but with something like Evans...that would be our life. Forever and ever. So thank you mr. hematologist for giving me something else to worry about...
My sweet boy today. How can somebody that is sick be so happy?! I don't get it...
Today we took maverick back to the hematologist. In 5 days his platelets dropped from 84,000 to 54,000. What a depressing appointment!:( if that wasn't enough his neutrophils dropped even lower.
Anything below 1000/1500 is considered Neutropenia. Neutropenia (noo-troe-PEE-nee-uh) is an abnormally low count of neutrophils, white blood cells that help your immune system fight off infections.
Maverick's number: 270 :( putting him in the severely low category.
The doctor gave us the option to start steroids and we declined. As a parent with a sick baby I feel like there is no right answer. I feel like all day everyday I pray and hope they just give him something to make it all go away and then when they actually give me a drug and tell me all the darn side effects...I don't want it. It won't "fix him" (from what I understand it will help the platelets but not the white cells) and the dosage with his age sounds like a guessing game and the side effects sound way worse than where we are right now. There's even meds for the side effects of the steroids....
So. We said no. The doctor said that was fine for now.
So with all that said he mentioned the words "evans syndrome" and I'm pretty sure I didn't hear anything after that. Yeah. He said its too early to diagnose him as Evans but we can't rule it out. Well...WHY THE HECK DID YOU MENTION IT????
I have read about Evans and it scares the CRAP out of me. It's a rare autoimmune disorder in which the body makes antibodies that destroy the red blood cells, platelets and white blood cells for no reason. Forever. No cure. Most treatments don't even offer complete relief. I can't even imagine. I know I'm getting ahead of myself but it's what I do. I prepare for the worst and hope for the best.
With every pregnancy I always had the fear that I wouldn't be able to devote enough time to each of my amazing little babies when the new one arrived. I feared that they would feel less loved and important and resent me or the baby. Since maverick has been sick I've seen that come true in so many ways. I know it's not my fault and can't be helped but with something like Evans...that would be our life. Forever and ever. So thank you mr. hematologist for giving me something else to worry about...
My sweet boy today. How can somebody that is sick be so happy?! I don't get it...
Thursday, April 5, 2012
84,000!
Mav's platelets were 84,000 today!!! His white cells were down a little but 84,000 woohoo!!
She said it might drop again but that hopefully not as fast since IVIG isn't a cure. It's a treatment and how long it last just depends.
Spring break week so we took everyone. His foot prick was a group effort!!
So we actually get a tiny break. We don't have to go back until Wednesday unless we see any new petechiae rash. Let's pray we don't!!:)
She said it might drop again but that hopefully not as fast since IVIG isn't a cure. It's a treatment and how long it last just depends.
Spring break week so we took everyone. His foot prick was a group effort!!
So we actually get a tiny break. We don't have to go back until Wednesday unless we see any new petechiae rash. Let's pray we don't!!:)
Bad dreams.
Mav woke me up this morning having what I guess was a bad dream. He woke up to eat at 4am and I just laid him in bed next to me. Around 6 I woke up and looked over and he was whimpering and doing that short breath you do after crying but he wasn't crying. At first it looked like a seizure or something since he wasn't crying so I picked him up really fast and woke him up. Finally he looked up at me and smiled. Scared me for sure! At first thought I was like, what can a 4 month have bad dreams about?!! Then on second thought with what he has been through...it's no wonder! So many needles, nurses, doctors...my heart just hurts thinking about it. No child should have to experience things like this! I pray everyday that he isn't old enough to remember any of it.
During the last 26 days I've tried so many times to find the positive sides of this situation. His age is the only one I can ever find. I've never had to say no you can't ride that bike or play that sport because your blood won't clot. I'm not chasing a toddler terrified he will bump has head on a coffee table. He can't talk. I don't have to hear him yell mommy no! Mommy hold me! No more! I had to hear those exact words from a little boy about 5 years old at our last office visit and my heart physically hurt for that mommy. Then as we stood side by side making our next appts we glanced at each other, faked a smile and moved on. I can still hear his little voice. I feel so lucky har I didn't have that factor making this even harder.
Getting ready for our next blood check today. PRAYING FOR SKY HIGH NUMBERS MAVY MAN!:)
During the last 26 days I've tried so many times to find the positive sides of this situation. His age is the only one I can ever find. I've never had to say no you can't ride that bike or play that sport because your blood won't clot. I'm not chasing a toddler terrified he will bump has head on a coffee table. He can't talk. I don't have to hear him yell mommy no! Mommy hold me! No more! I had to hear those exact words from a little boy about 5 years old at our last office visit and my heart physically hurt for that mommy. Then as we stood side by side making our next appts we glanced at each other, faked a smile and moved on. I can still hear his little voice. I feel so lucky har I didn't have that factor making this even harder.
Getting ready for our next blood check today. PRAYING FOR SKY HIGH NUMBERS MAVY MAN!:)
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