amazed...

Well apparently I am doing amazing. I have been in the hospital for 17 days now, and I am day +10 post transplant. Besides a few minor issues, couple fevers, a rash on my legs, headaches, and 2 days of minor backaches this has been *knock on wood* rather easy. I threw up a few times from the chemo, but it wasn't long last lasting, and as soon as I did it I felt better. I know I'm not out of the woods by any means, I mean my white blood count is still only 0.9, but my doctors are impressed and are already saying I could come home mid next week baring any further complications!! Crazy. God has really been watching over me during this. Here I've been waiting for the other shoe to drop basically, and I'm beginning to think that I may actually get through this without any crazy complications! Hope... I think that's what they call it. I almost forgot what it felt like. But I think I could get the hang of it.:) Thank you for your prayers and well wishes.

lucky girl

Thanks

I just wanted to thank you all for your kind comments. I apologize for not responding to each of you. I'm a little busy these days. :) Today was the first chemo infusion and so far it's gone great! I don't feel any different...no nausea or anything! I also wanted to thank Day... I appreciate your blog. With all you have on your plate you still remember others, you are a great person. I am so happy that things have worked out well for you.

Here's the link to my caring bridge site.
www.caringbridge.org/visit/heathermazz

Talk to you soon!

Lucky Girl

tick-tock tick-tock

Well in less than a week my next journey will begin. I am getting more and more excited and more and more anxious and nervous as well. But mainly I am thrilled of the thought of being free from this illness. I go in one Oct. 3rd and start my chemo and ATG treatment, then on the 10th I will have the actual transplant. The doctors are now saying that instead of a definite loss of fertility it is only a possibility now. That also means that menopause is only a possibility as well. This was very good news. I just turned 26... menopause doesn't sound fun. I was also told that I may or may not lose my hair. (Are you getting the picture yet? They basically can't tell me anything definite heh.) My mom works her last day at her job this Friday and will take over in taking care of Z. He has therapy 4 times a week. Luckily PT, DT, and OT are all in home! We only have to leave for aqua therapy. B who had been planning on working during my transplant (only because financially we cant afford for him not to) decided that he doesn't care about the bills and that he's going to take a leave of absence. I cant blame him, God knows I wouldn't want to work if he was going through something like this. I will try to update this site as often as I can. It all depends on the internet connection in my room. I've been admitted there 5 times and 3 of those times I had a great signal. I will ask for prayers if you're the praying kind. Honestly this is all in Gods hands. I have a deep sense of peace that everything will work out... but hey who goes into something thinking that their not gonna make it? ;) Talk to you soon!

Lucky Girl
(Trying to use her "luck one last time at least)

Emotions...

Is it a bad thing that I often think about the possibility of dying? My husband B never wants to talk about it. And I can't blame him really. If the roles were reversed I would be acting the same as him. But I find myself wanting to tie up any and all loose ends... "just in case". I want to write letters to loved ones or even make videos for them. Especially for B and Z. Heck if I died, Z would not remember me at all. And that is a sad thing. People get uncomfortable when I talk about the fact that it is possible I may die when I go through my transplant. I know there not going to agree with me, but I guess I just want everyone to know that it's a pretty serious thing. People look at me and I look healthy. Im not underweight, Im not weak andunable to take care of myself. I still like to go hang out with my friends and even dance now and then! So when people hear Im sick I feel they often think that I simply need to take medicine or maybe that I need a small operation. I always tell people that I honestly don't feel I'm going to die, and truly I DO feel everything will be fine. But when your put in the situation if you don't think about every possible outcome I don't think your preparing well enough.

Ever since getting my transplant date I find that I don't want to talk to people. I dont want to go out. I don't leave the house. It's almost like Im depressed. But I should want to go out now because I'm going to be stuck in a hospital room soon enough. But I can't get outta that rut that tells me to grab my son, and crawl into bed and stay there.

I get excited, and scared, and nervous, and hopeful, and sad all in the same hour. I cry for no reason, then I cry for many reasons. No one seems to be able to make me feel better. And I don't expect them to. But I hate this person. I don't recognize her. And she is getting really tired of being strong. But the months ahead is where Im really going to need that strength.

The means to an end?

Well Tuesday I got the call. The transplant coordinator said that they are trying for a transplant date of October 3rd. I would be admitted probably somewhere around September 27th to have all the chemo and such done before the actual transplant. I am both excited and nervous. This is what I've been waiting for, it's what I need to potentially be done with PNH! Granted it will most likely bring along it's own problems, but hopefuly they will be less threatening than the blood clots I have been having. I go in on Aug. 30th to have a pulmonary function test, EEG, EKG, Cat scans, xrays and blood work. They have to see that I'm healthy enough to have the transplant. Then September 10th I will meet with the Doc and go over my results and by then know the exact dates. I am trying to get everything situated. The bills, Z's therepy schedule (my mother is going to be watching him), Make some dinners and freeze them for B to have while Im gone for the 6- 8 weeks. I am printing out tons of pictures of my little man and the rest of my family to bring with me so I can at least look at pictures of my family while Im there. I will keep you all posted.

Keep on keepin' on...

Well by this time I had hoped that I could be updating you on either my bone marrow transplant or at least a date for it. But alas, I have neither to give you. Apparently my doctor has another PNH patient who will be going through a bone marrow transplant (bmt) and my doctor would like to coordinate us together. Convenient for him, but a pain in my ass. I was told now that it could be August or September... that makes me think maybe December. ;) I must say though that I have been feeling fairly well. Still have my daily headaches, but I can manage those. And have been tired due to a Hgb level of 8 as opposed to my usual 10. I am getting over a nasty cold though, so that could be part of it. I do have to say though that my latest pap came back with dysplasia. After a lovely colposcopy the result are back as mild dysplasia... which is basically pre-cancer. Granted most cases either go away on their own or are extremely treatable, but I am finally going to admit that my plate is full! So for a year I have to go back in to get checked out every 3 months. Im gonna share a little tmi here but, I got pretty irritated when I got this dysplasia thingy... I mean I have only been with 1 man... the lovely hubby, AND we actually waited till we got married! (I know... weird right?? What was I thinking?? lol j/k) I still don't understand why all this is happening to me. I know there is a reason. I just want to know what it is now. :) Don't we all, don't we all.

Little Z is as happy as ever. I do feel that he is starting to get frustrated though. He wants so badly to get up and go but his body just doesn't cooperate due to the cp. In good news his EEG came back and he is NOT at risk for seizures. There is parts of his brain that are abnormal from the bleed at birth, but nothing is different. B has been wanting to contact our lawyers about Z's cerebral palsy. He still feels that it could have been prevented and wants to check into seeing if we have a case or not. I myself don't even remember that time so I have no idea what to think. But my gut has always been to think that his condition is my fault... not that I could help it, but my condition may have caused it. Z's ped. neauologist wants to start Z on botox shots. He would need them every 3 months. Apparently botox is injected into muscle groups and could potentially allow him to have more control over his movement, and therefore help him crawl or maybe even walk. Hope is nice... I like hope. He also talked about casting Z's ankles in a 90 degree angle (when he bears weight on his feet he becomes a ballerina, pointing his toes) they would cast them for about 3 months and then hopefully this would give him an advantage if walking becomes somehting he can do. I want it all to work so bad. I'll admit, I want that magic wand to be waved over his head and have him jump up and come running toward me. I still believe he will do everything... and I'm ok with the fact that it could just take alot longer.

Apparently sometime today my not-even-a-year-old-car was hit by someone. I got out of my car to go into the grocery store and noticed that my rear left bumber was crushed in. That's great. Most likely happened in the walmart parking lot earlier. I went to walmart thinking that they could check the surveillance parking lot camera's for me... but no. I have to file a police report first and then the officer may go check out the tapes. So I am awaiting a police officer to call me back to get the details. We have either a 500 or a 1000 dollar deductable as well. Fun for me. 10 years driving and my first accident is a parking lot hit and run.

My insurance changed as of July first. Now instead of having to pay 50% of every office visit I get to pay 100%. Now everything else is covered... we can get procedures and surgeries and hospital stays till we're blue in the face. I just can't go see a doctor. And with Z's condition and my condition well... lets just say there is now financial stress as well. Me having not worked in over a year definitely doesn't help.

Here are some of his 1 year pics... a little late, but oh well.


Thanks to everyone who commented. I apologise for my posting delay, I was just waiting for something good to report. Sometimes I have to remember that "something good" may take a bit longer than I'd like. Hope your all well.

-Lucky Girl

Life is unfair sometimes...

Well Z's first birthday has come and gone. And it's truly hard to believe that he has been here for a year! We are actually having a get together on Father's day with the fam to celebrate his birthday. Z is going to be dedicated at church, and then we're gonna have a little party at our house. I bought B and Z matching blue polo shirts and some khaki pants to wear on father's day at church. It should be cute.


SIDENOTE... the rest of my blog is about my beautiful little boy. Day, I dont think you should continue reading... you just need to sit back, try to relax and think happy thoughts!



As I've mentioned before, I had an emergency c-section at 28 weeks... that's 12 weeks early. Z is delayed as any preemie would be, but his delays dont seem to be correcting themselves as time usually does. We have been doing physical therapy for a few months now, as Z still is not sitting up, let alone crawling or walking. Z's therapist recently recommended that I take him to see a pediatric neurologist to see about getting some muscle relactors for him. I was hoping the therapy would be enough, but maybe I am too optimistic. So I took him in and the doc wants to do another MRI (one hasn't been done since he was in the NICU) and he also wants to do an EEG. When I asked about the EEG the doctor told me that because of Z's grade three IVH and the subsequent PVL he is at an increased risk for seizures. Now he has never had one that we have ever noticed or seen, so hearing this was a little devastating. I also mentioned how we were told that after he was born he would have an increased risk for cerebral palsy due to his brain injuries, but as any parent would do we tried to block that out and hope for the best. This doctor basically told me that he thinks he has CP and that it isn't a mild case like I was thinking it may be. I however don't agree with him. The tough part is that usually a "diagnosis" of CP isn't made until the child is older, so for the first few years you just sit there and worry. When I asked if he thought Z's mental capabilities would also be affected from the CP he flatly told me probably. I was crushed. He then proceeded to tell me that my son is funtioning at the level of a 2 month old. By this point I'm thinking he is purposefully trying to hurt me. I know he is delayed but I would say he's more around the level of a 5 or 6 month old! I am so crushed because I feel so guilty now. Guilty that I HAD to get pregnant even though it wan't recommended. I had a bit of a cry fest that day. I asked B if he was ready/ willing for the road that a "special needs" child may lead us on. And his reply was, " I dont really have a choice do I?" to that i respond through tears,"well you could leave us" and he laughs and says, "Im not going anywhere". God I love that man. I get a little angry at times. I can handle everything God wants to put on me (with my own illness that is) but I am not sure I can handle the things he wants to put on my son. I am jealous everytime I see a little toddler walking around.. jealous because I dont know if my son will get to accomplish that. And I hurt...for him, not really for me. I'll have the easy part. He has to live it. I am jealous when I meet with my friend who had her twins 4 weeks before I had Z. He twins were born at 24 weeks and they are perfect. Then Z was born at 28 weeks and was a full pound heavier than her bows were and HE has lasting effects!?! Thats when the good ol question WHY comes up. I am a woman of faith. And over the past few years my faith has been tried and tried. Then I heard a song that has made me cry and yet has given me a peace about it. It's called "Praise you in this storm" by casting crowns. I want to share the lyrics with you all...

*******************************

I was sure by now

God you would have reached down

And wiped our tears away

Stepped in and saved the day

But once again, I say “Amen”, and it’s still raining

As the thunder rolls

I barely hear Your whisper through the rain

“I’m with you”

And as You mercy falls

I raise my hands and praise the God who gives

And takes away

I’ll praise You in this storm

And I will life my hands

For You are who You are

No matter where I am

Every tear I’ve cried

You hold in Your hand

You never left my side

And though my heart is torn

I will praise You in this storm

I remember when

I stumbled in the wind

You heard my cry

You raised me up again

My strength is almost gone

How can I carry on

If I can’t find You
As the thunder rolls

I barely hear You whisper through the rain

“I’m with you”

And as Your mercy falls

I raise my hands and praise the God who gives

And takes away

I lift my eyes unto the hills

Where does my help come from?

My help comes from the Lord

The Maker of Heaven and Earth

**********************************

I am going to believe in God's plan. And keep believing that God has something planned for Z. I dont know what that is. But I am not in control of it. I will give him every resource to help him have every advantage he can possibly have. But either way. It was a tough day. No one wants to think of their child suffering, or being different, and the pain that can follow because of that.

In other news... my transplant deal may happen next month (July) But I'm not holding my breathe. No one seems really excited about setting it up except me. Since Im on my "miracle drug" Soliris, and am doing fantastic I think they wasnt me to forget about it. But I was to be cured... not sick but taking a med to control some of the symptoms.

Sorry that most of this post was pretty deep. I have ALOT on my plate. And bloggin helps me get it out. Even if no one is reading it.

Hurry up and wait?

I met with Dr. Know It All my PNH doctor last week. I informed him about my insurance changes coming up and also expressed to him my concern about this fall. As many of you may know Chrysler was recently bought by a company called Cerberus. My husband works for Chrysler... and while it was once known for it's great benefits and pay there is to be a new contract drawn up this September with the new owners and there is talk about decreasing pay by 30% and also messing with our healthcare. Whole alot of this is hear-say the problem is that we just DONT KNOW what's in store for us in the future. One thing that is causing US automakers to lose money is the fact that our pay and benefits are far far better than foreign car company's. So we are preparing for the worst. Dr. Know It All told me that he was very excited to see how my blood counts are responding to the new drug treatment Soliris. The only side effect I have had from this new drug are headaches. When asked when he is thinking about doing the bone marrow transplant he told me that it's up to the donor, depending on when he is available. (side note... since I had 4 potential donors the doctors told me that he chose the youngest male donor.. I thought that was interesting) But he did say that it could be done next month!! That came as a bit of a shock. I tend to be one who likes to plan in advance and prepare myself for things, so to hear that in a few weeks I could be undergoing chemo and a bone marrow transplant was a bit much. But as scary as it is I am even more excited to move on. have felt like the past year I haven't been able to be me... I was only as good as my illness let me be. So... I guess I am just waiting for the call to see if things will be progressing as quickly as he said.

Z is doing great... I have an appointment to get some 1 year pictures taken here in the next few weeks. I will try to post then once I get them.

"Hi" to any new friends who may be stopping by my page. You are welcome here. :)

Busy doing nothing?

Sorry for the lack of posts. Although the few of you that read this probably are used to it by now. :)
Let's see... since my last post, what has happened? Alright well, at the end of March through the beginning of April I was in the hospital again. Only for 4 days, this time no clot per se, which was good, but I was there for severe abdominal pain that was only manageable through some intense IV narcotics. Then the 3rd week of April my husband B and I went to Florida for a week, baby free. My parents graciously watched him for us. It was great to get away, just the 2 of us. Since I had Z almost a year ago now I haven't been working, which means B has been working his butt off. It was nice for him to get some down time, and for us to have some time to sit, relax, and reflect on everything we've been through this past year. And to have some time to talk about the future...bone marrow transplant talk and such. We have 2 different friends that live down there just 30 minutes apart so they let us crash at their places, which is nice because hotels are quite expensive. I stayed for 1 week and B stayed for 2. I told him to. He had 2 weeks vacation left at work to use up, and I didn't want to have the grandparents watching Z for 2 weeks, so I came home. Plus that would give B time to do some scuba diving. Since I started blood thinners I'm no longer allowed...which sucks. But he had some great diving in the Keys. When I got back the abdominal pain started again. The next day I was back in the hospital for 5 days this time. This time I had a 102 fever as well. The docs decided to start me on antibiotics. Some patients with PNH also develop liver issues like Budd Chiari Syndrome. (During my pregnancy my liver took one hell of a beating. It was completely full of micro-clots that couldn't show up in ultrasounds. Not until they did the biopsy did they realize how bad it had gotten.) Back to why I was admitted this time...the doctors aren't sure, but they think I developed SPD. They tapped my abdomen and withdrew alot of fluid. (Gross I know. Sorry.) After the 5 days of IV antibiotics I am feeling better. One good thing is that while I was in the hospital I received my first infusion of the miracle drug. My insurance finally agreed to pay for it! With tons of help from my case manager from the drug company. She was incredible. I've had 2 infusions so far and besides a urine color change I haven't really noticed much else. But if it prevents even one clot, I'm grateful. I meet with Dr. Know It All on Thursday and will have alot of questions about the upcoming future. Last month I had a message on my answering machine telling me that the national bone marrow registry had not only found me a matched unrelated donor...they had found me 4! I cried tears of joy when I heard that. I was always afraid of making the decision to have the transplant. But I put my faith in God and told him that it was in His hands. Most people can't find 1 match let alone 4! So I took it as a sign that the transplant is the way I should go. I'm afraid though, that since the miracle drug is now available the doc won't want to proceed with the transplant. I'm not crazy... I know that a bone marrow transplant could potentially kill me. But I also know that it could ultimately cure me as well. While this miracle drug is great and all it still is not a means to and end. And with my history of clots, I'd rather take my chances with the transplant. One bad year for a chance to see my grandkids and great grandkids. Sign me up.

Enough medical nonsense... Z is almost a year old! He is still not crawling and I still occasionally get sad about that. But that's my issue... not his. Therapy almost seems like a joke. This woman gets paid to play with my son for an hour. I do more with him at home, which is fine with me. But I still take him once a week. My insurance is changing in July so after that we'll have to find a new therapist anyway. Z has been eating baby food for the past few months. He's still not great at it. It really depends on his mood if he's going to eat it or just spit it all back out. Now with his 3 teeth it's hard to even get the spoon out of his mouth! Ah well... such is life, and we'll just have to keep working on it. Z also has gotten glasses. And I might add that he looks mighty cute in them. The eye Dr. says he has an astigmatism that causes one eye to turn in. So the glasses are to train the eye to be straight. If the glasses do their job he won't need them forever. Just long enough to train the eye. I will try to post a pic of him in his glasses soon.

Today was my first official mothers day. It was nice. My entire family went to church to see my nephew get dedicated. Then we went to their house for lunch afterwards. B had gotten me a photo album and had filled it with pictures of our first year with Z. Starting with my belly pictures! It was sooo nice. It's funny to look back on. My last belly picture was 25 weeks. And I had Z at 28... I really wish I had taken them weekly. Anyway the gift was simple, inexpensive and perfect. I cried. I love my husband.

Sorry I was all over the place on this post... just trying to catch you all up. Hope you're all staying out of trouble. :)

He's how old??!!

Bubba is getting soo big!! He turned 9 months old last week! He had an appointment for some more immunizations (4 shots) and he weighs a whopping 20 lbs and is 26" long. He is babbling so much more now. One of my favorite things is when I sing to him, he "sings" with me. It's the cutest thing. He is still behind for his age...which is normal. He has rolled over from front to back but not from back to front. He has the motion of crawling down, but he just doesn't go anywhere. He looks like he's swimming, it's cute. We just started cereals and baby food. That has been quite interesting..the facial expressions alone are hilarious. Z starts physical therapy on the 15th. Im so excited to learn what I can do to help him get ahead.

I am doing better as well. I had another CT scan and the doctor said things are looking better. The clot seems to be dissipating. The new miracle drug I'm trying to get on is slow in coming, but everyday is one day closer. My doctors want to keep my hemoglobin above 14...they're hoping this will prevent me from getting more clots until the drug is available. But in order to keep it above 14 I have to have tranfusions regularly. Tomorrow I will go in for 2 units. (Please donate blood... you never know who's gonna need it) They have also ran my name thruogh the bone marrow transplant registry again, and as of late there are some potential matches!!

I had an interview for radiography school today. I'm hoping to get in. The hospital takes 10 students a year. It's a 2 year certified program through the local hospital. I'm just hoping that it works out. If I end up needing a bone marrow transplant though school won't be happening! I dont mind being sick so much as I hate how it makes me unable to plan anything. Anyway. just wanted to let those of you who read this that I'm alright. :) Hope you're all having a fabulous week.

Deja Vu?

I think I must subconsciously like hospitals. I was back in the ER on Saturday for vomiting... I had the precautionary head CT scan to make sure the good 'ol head clot wasn't acting up...looked good so I was sent home...back in the ER on Sunday because now was nauseous and had the worst abdominal pain I've ever had...had CT scan of abdomen...something looked weird... sent to my usual "PNH hospital" via ambulance (hour and a half from my home). And now here I sit... in my "second home". I had another CT scan done of my abdomen here and their were some abnormal results, but unfortunately the doctors dont know whats going on. So... I get to wait. As of yesterday I am not in excruciating pain, so thats good. I do have a headache, but compared to the abdominal pain I was having this headache is nothing. I hadn't eaten since friday due to my nauseousness...then they wouldnt let me eat anything! An hour go they finally told me I could eat... but only for 5 hours then I cant eat again because I get to have an endoscopy tomorrow.(Is swallow a little camera thing so they can check out my small intestines) Im not too excited about this...but apparently they give me some pretty good drugs so I'm there but not really "there". So I just ordered a cheeseburger, a salad, angel food cake, strawberry ice cream, and a sprite. B went to chipotle and got me a burrito for later. :) He's so great. Although I'm glad I'm feeling better...it makes me more annoyed that I have to be here. But I would like to know what caused the pain. They ruled out a clot in the small intestines... which is what they originally thought. But not knowing whats going on, and having the doctors not know whats going on either just makes me irritable. We can fly to the moon but we cant cure cancer (or PNH). Ok.. sorry, Im done ranting.

So I know I was going to try to steer clear of "medical posts" but what can I say?? The only thing that annoys me is that my lovely mother in law has been watching Bubz this whole time. Ugh!! I am grateful for her "help"... but theres just something about having a crazy woman take care of your child that drives you nuts. I know she is a great gradmother and loves him to death. But I guess I'm just still hurt about her view of me. Anyhoo... she's crazy and I shouldnt care.

Take care all... and I'll try not to stay here too long. :)

My apologies...

I was finally released Sunday after 18 days in the hospital. My clot and bleed seem to be stable and so I begged the doctors to release me. I told them that I understood that they were nervous but that I couldn't just stay in the hopsital forever because somethine MIGHT happen. They finally agreed. My headaches are actually starting to lessen so Im taking that as a sign that the clot is either dissolving or more likely the blood in my brain has found a new route of passage. Either is fine with me at this point. So from here we just have alot of follow up appointments. I had a blood test today and strangely enough most of my counts were normal. While I was in the hospital I had what's called an exchange transfusion. I had never had one of these before,they do these alot in patients with sickle cell Im told. I had an IV in each arm, in one arm they were removing my "bad" blood and in the other arm the donor "good" blood was going in. I received a total of 9 units of donor blood. Since having that done my counts have been pretty high, and actually staying pretty high. The procedure itself was pretty tough I about passed out and my blood pressure fell to 78/46... and I was out of it for about 12 hours afterwards... but despite that I felt great afterwards. Next week I'll have another head CT scan. So all in all Im hoping things are gradually getting back to my "normal".

In more important news... Bubba was evaluated and told that he would probably benefit from physical therapy 1 to 2 times a week. I dont know why this makes me sad, but it does. I have NO problem with the fact that he needs therapy and I have already been calling around trying to find the best of the best. But why does it bother me then? I am starting to think it's guilt induced. I was sick so he was born early...etc etc etc. He was born early because of me, because he was born early he ended up having a grade 3 intraventricular hemmorhage with PVL...both of which are linked to possible cerebral palsy diagnosis down the road. In my own mind I feel Bubba is doing great... slow at some things? Sure, but understandably so seeings as he was so early. I just cant seem to get passed the guilt that anything that may be "wrong" with him is ultimately my fault. But I guess I need to get over it because I have an incredible son who just so happens to need a little help in things right now... and at the end of the day theirs nothing wrong with that.

So therapists... how do you pick one? Id love to have one come to the house so that Bubz can be in his home environment, I think that would help him alot. Id also love to know what I can be doing with him on my own. Anyone have any ideas or helpful suggestions. Its a bit like getting a nanny or something. You want to make sure you have the best person for your child.

For over a week now B and I have been talking about how Bubba needs a new car seat already and how we cant believe it. I know the manual says up to 25 lbs and that Bubz is only 19 lbs but he's too big. Then the other day I noticed that their are adjustable holes as to bring the shoulder straps up higher. yeah... we're that new of parents. I felt horrible, no wonder he hates his carseat. Well that wasn't the 1st stupid parent mistake we've made, and I know it wont be the last. Just thought I'd share.

Hope you are all having a glorious week. Leave messages please... I'm trying to expand my blogworld friends but I seem to be failing miserably. Maybe if I stop with the horribly negative "medically" based blogs people would respond. LoL I'll try :)

Update...

Sorry it's been so long. Today was a pretty good day finally pain wise. Thursday night my headaches were ridiculously worse, to the point where I was even vomiting, so they did another scan of my head. Apparently the person who "reads" the scans at night didn't look at my scan very well, because he informed the doctors that the scan remained the same and that there were no changes. When I woke up the next morning there were 6 doctors over my bed asking how I was feeling because the scan last night was since re-read and not only did I have a clot in my head but I now also have a bleed in my head. How can someone be a risk for blood clots also be at risk for bleeds?? Aren't those exact opposites? Oh the joys of PNH. (Paroxysmal Nocturnal Hemoglobinuria) So they got all of their "teams" together and had some meeting about me and decided that at this point the bleed has to be my main concern, and we will worry about the clot down the road. So they have taken me off of the blood thinning medication I have been on for years and are hoping that over the next few days the bleed will be absorbed back into my body leaving me with no damage. After this has happened the doctors know that they need to restart my blood thinning medication, but careful as to not create another bleed. Sorry if this is getting a bit technical. The problem with this whole situation is that there is no textbook answer as to how to deal with it. This is definitely not an everyday occurrence and so the doctors are literally a little stumped have even admitted there lack of knowledge to me. I appreciate this honestly. They are calling other doctors all over the place including my other specialists. I really feel like every precaution is being taken, but it is a bit unnerving feeling like you are the only person this has happened to. (Although I realize I am not) Today marks 9 days in the hospital, and I was told I will probably be here at least another 5 days. I will try to post again when I hear news...but I have been told this is somewhat of a waiting game. And were hoping for a boring game.

Hospital food anyone??

Thursday the 25th I was admitted to the hospital, my headaches were getting ridiculously worse, and the oxycodone wasn't touching it. They did another MRI of my head and compared it to the one I just had on the 11th. The clot had gotten larger and was therefor making it very difficult for my brain to drain as it should. The pressure was what was causing my headaches. They started me immediately on IV heparin to hopefully make sure the clot didn't get any worse. B stayed with me for the first 2 nights. and Bubba stayed at my parents house. I was surprise B wanted to stay overnight with me. The"chairbeds" are not comfortable at all. But it was nice to have him here. With the clot being in my brain there is always the risk of a stroke.

I had just started a new birth control pill on the 14th and even though it was progesterone based (as opposed to estrogen which has been shown to increase the risk of clot) the doctors thought that this pill was the reason the clot grew, even though I was on blood thinners. The doctors came in and told me that I was to stop taking the pill altogether, and to never try one again. They then said that they would recommend an IUD. I told them I wanted one too but that my PNH specialist told me that it would increase my risk for infections. They then tell me that I should look into getting my tubes tied. Even thinking about that makes me sick to my stomach. I am 25 years old. It's just heartbreaking. I know deep in my heart I should never have another child, before they wheeled me into surgery to deliver my miracle they flat out told me I had a 50/50 shot of making it through the surgery. So I realize that I am extremely blessed to have one child and maybe I'm being greedy, but I don't really care. I'm just being honest. In the back of my mind I keep thinking about how I would still be in "child bearing years" for another 10 - 15 YEARS. It's just not fair. B and I have talked about surrogacy and we even have one embryo on ice, but I know nothing about surrogacy or it's cost, as I'm sure insurance won't cover a cent. Then there is also adoption, and I really do think it's a wonderful thing. But I'm gonna be greedy here again, and admit that I dream having a little girl (or even boy) who look like me. Z is a spitting image of his father. B has often asked me if I wanted to take a maternity test to make sure he is really min. :) I just desperately want to have another child. I often day dream that my illness would just go into remission and that I'd be able to have children without a care in the world. Or I think about how if I ever do get a bone marrow transplant, would I then be able to have kids? It's just not fair. And today I'm allowing myself a "feel sorry for me day". Most of the time I remind myself that as many struggles as I DO have, my life is still incredible and I am more than blessed. B and I talked and he will call for an appointment get "snipped". He said it makes more sense, and is safer for him to have the procedure as opposed to me. And at least it is reversible if anything were to change.

I miss being pregnant. I think this is because I know it will probably never happen again, but also I think it's because I feel robbed in a way of my pregnancy with Z. I was only pregnant for 28 weeks and 3 days.. I didn't get to be huge, I didn't get to be awake for the delivery, I didn't get to hear his first cry, I didn't even get to see him the first day he was in this world, B wasn't allowed in the room during Z's birth. He didn't get to cut the chord. I didn't get to breast feed as my milk never fully came in. I think this was because my body was just too sick ad probably in a little bit of shock. If I used hospital pump I could get some milk, and I gave him everything I could for the first month of his life. But I missed that bonding. And knowing now that all of those experiences are probably the only ones I'll have,it just makes me sad.

Today my headaches FINALLY seem to be getting better. This more than likely means that the blood in my head has made alternative routes to drain so the pressure will decrease. I am hoping to be released tomorrow. I miss my little guy alot. Hope all is well with everyone.

Also... I am new to this whole online blogging thing...I am trying to "make friends" but I havn't really figured out how to go about that yet. Any suggestions? Thanks alot.

Ahhh the story of the MIL

I have had it. I love the woman because she raised my husband and he's an incredible man...but I think that's the only thing I like about her now. Here are a few (definitely not all) of the stories she's blessed me with.

My MIL and I always got along. I truly thought she was a nice lady, and I could never understand why my husband B would always tell me that she was crazy. Well... now I get it. My MIL was always really nice to me, and I thought we got along great. Then one Easter while B and I were dating I came to dinner at his parents house with him. She completely flipped out! She scolded B for not calling first, and asking if I could come over. And she didn't pull him aside and do this... no, she proceeded to have this talk with him in front of everyone. Talk about feeling unwelcome! Well, we eat and life goes on. A few weeks later MIL pulls me aside and tells me that I am ALWAYS welcome at her house, and that an invitation is never needed. Well she has a funny way of showing it, but hey maybe that was her way of apologising. I'll take it.

Well, my MIL had 4 boys...no girls. So when I come over I like to compliment her on the "girly" stuff that guys usually don't notice. So I compliment her new framed painting on the wall and her new choice of color she painted the family room, and maybe let her know that her table centerpiece is very nice. And I am being truthful, the woman has some good taste. A few weeks later B tells me that FIL talked to him at work and that MIL apparently thinks that every time I come over to their house I walk around looking for something to comment on. And that she feels like her house has to be in perfect order to have me come over. WOAH lady, I was simply complimenting you. Why the heck are you being defensive.
Hmmm what story next... OH yeah, well one year after B and I had gotten married we went over to the in-laws house for Thanksgiving dinner. I had been to the apple orchard recently and had made a few apple pies. B told me they were his dad's favorite, so I thought it would be nice of me to bring one to dinner. We walk in and MIL and FIL are in the kitchen I say hello to them and tell them I made FIL's favorite, an apple pie. (This pie was made from scratch folks, I am proud of the pie) We'll I don't notice anything wrong with that. But oh boy will this pie come to haunt me over the years. This pie will prove to be a dreadful mistake for the years to come. On more than one occasion MIL has brought up this pie and told me that I made FIL something but did not make her anything, and that her feelings were hurt. Are you serious? At first I honestly thought she was joking. I mean come on, over a pie??!!

Well last November B's little brother decided to move from Illinois to California. So we went over to the in-laws house to see him off. MIL must not be taking the fact that her son is leaving her very well because she proceeds to yell at me. She walks out of her house and I am holding my little peanut and she says to me " I dont think this is very appropriate." I have no idea what she is talking about. So I ask her what she is talking about. Now she tells me that "tonight I will get to hold my baby in my arms and her baby will be in California." I will admit it, the woman frightens me and intimidates me. I am not a confrontational person. I am now completely lost. her "baby" is 25 years old... my baby was 5 months...is she really comparing the situation. So B starts to see that there is commotion up by the house so he walks up and asks me whats wrong. I probably had the deer caught in the headlights look on my face. Well unfortunately for me the way I tend to deal with being yelled at and or confrontation is to cry. So I tell B I had no idea what was wrong and proceed to cry. Now B is furious... he knows his mom and he knows how she is. So he says that we are leaving. MIL walks in the house and locks the door. I realize I need to go get my diaper bag and purse soI walk in through the garage. MIL says in the meanest voice ever,"you bitch"... I say to her "I'm not a bitch and neither are you". (which I was proud of for not stooping to her level) I don't think she realized I was in the house and she says... I wasn't talking to you. Funny because I was the only other person in the entire house. I should have asked her if she was talking to one of the voices in her head. Then she talks for about 30 minutes about how I criticize her painting, I didnt bake her a pie, how she's the bitch and FIL is on a pedestal. She moves from one thing to another and really makes no sense. finally B comes in and tells her that until she see's someone for mental help we won't be coming over anymore. I was completely devastated at first. I didn't want him to give up his family. But he has told me over and over that he has been dealing with that for 32 years and that it's not me it's her. Now MIL and FIL are saying if we don't want to see them they don't think it's fair for us to keep their grandson away from them. ARE YOU SERIOUS! If they don't want to have a relationship with me... or even just be civil... why should I let them see their grandkid? Why should she get everything she wants which is only her grandson and not have to change anything. As much as I know how kids need their grandparents I was glad when B decided that no, she needs to get help first. What kind of parents would we be if we allowed her to see him when we truly felt she needs some therapy.

I have been doing research online and have decided that she has BPD. Borderline Personality Disorder. I feel a little sorry for her as she doesn't "believe" in mental health doctors. And as most people with any mental condition, doesn't think there is anything wrong with her. I hate that B hasn't talked to his parents in over 2 months, but he says it's for the best.

Over the years I always made excuses for her, like maybe I should have done this, or maybe she just had a bad day. But I have finally realized that there is nothing different I could do. I honestly didn't do anything wrong. That was a hard thing to accept. I still love her... I just wish she'd get help. She could be a really great person.

"Good News" ... I guess

We'll after a MRI of my head we've concluded that there are no new clots. This is "good news"... however the old clot is still there and doesn't seem to be dissipating much at all. Since I am already fully antocoagulated there isn't anything else to for it. So blood doctor told me to enjoy more caffeine, wrote me a prescription for 200 oxycodone, and sent me on my way. My headaches however are barely helped by the plethura of narcotics. Headaches have been pretty much constant for about a month now. I'm just hoping that I get approved for the new drug (Soliris) that is supposed to help with many of the PNH side effects. It is supposed to be the "miracle drug".

On a lighter note... my little miracle got evalutated Friday. Because he was born so early he is eligible for free* services from the state. In case he needs any cognitive, motor, or neurological therapies. ( *free for some, but my husband B makes "too much" money so it wouldn't be free for us if a plan is needed) Right now he just get's evaluations, which are free. Although he is actually 7 months old, he is really only 4 months old adjusted. He is showing to be at about a 3 month olds level. Which is not alarming by any means. She asked if he rolls over and I told her that he has rolled over twice. Wouldn't ya know it she puts him on his stomach and he rolls over right then. I can already tell he's going to be a show off. He has to get another shot in the morning... his flu booster.

Well... time for another pain pill. Take care.

Headaches and Nausea...

If only it were because I was pregnant. :) But my body needs a couple years of healing before we try that again. I have been having some abdominal pain, nausea, and headaches on and off for a few weeks now. Normally this wouldn't be a problem, but last July I was hospitalized when they did a MRI of my head and found that what I thought was a terrible headache was in fact a blood clot in my brain. Fabulous. It's things like this that are making me become a hypochondriac. So... I have an appt. with blood doctor Thurs. and I'm gonna call and see if they can do another MRI while I'm there. People with PNH often get headaches and abdominal pain and there is normally no cause behind it. So I'm hoping that these are just normal PNH pains and not something more serious. Its a little nerve racking, being 25 and needing to keep an eye out for signs of strokes. I'll keep you posted.

Best baby ever??!!

Miracle baby turned 7 months old yesterday! I was nervous when my little peanut finally came home from the NICU back in August. I was afraid that I wouldn't be able to keep up with his schedule. With my PNH I know that I require more sleep than usual, and add the needs of a newborn baby(let alone a preemie), well it's enough to make you begin to doubt yourself. Well I think I only had to wake up to feed him one time each night for a month and all of a sudden Chunky Monkey was sleeping through the night. Not only SLEEPING through the night... but sleeping 10...11... 12... hours! For about the past 4 months he has slept through the night. And for the past few weeks I have even been able to put him in his crib before he is asleep, and he falls asleep on his own without crying! He amazes me. I am blessed.