Monday, August 18, 2008

more of Mackenzie's story

Since I have not felt like talking much less writing since the news about my middle bears, I have not written anymore about my angel baby so I thought today I would.
I left off at my 7 month, so here goes........

In my 7 month they suddenly told me that there might be something wrong with my sweet baby,(they told me that the ultrasound had shown that my babies head arms and legs were bigger then the torso which could be a problem) They sent me for a fetal assement, there I was told that my baby was altogether to small he should have been 2 pounds and they thought he was only about a pound and a half. So they scheduled another fetal for a week from then. I went home a cried. The next week they did another ultrasound and he was exatcly where he should be, I guess Mackenzie wanted his mommy to stop being a worry wart so he grew like crazy to catch up. At that fetal they told me he was gonna be just fine!!!!

The rest of the pregancy went just they way it should, my only complainets were the intense groin pain I would get if I walked to much ( the doc told me this was normal for second, third, fourth pregancies I have not ever had it again only with our angel baby), and the way my hips hurt after a full day of work. We were just so glad that the baby was okay. My then 2 year old daughter would lift my shirt for EVERYONE and tell them that our baby was in mommies tummy she was so exicted to have a brother or sister (we did not know what he was). So on we went not knowing the tragdy that was yet to come.

June 28 is my dad's birthday, we were due on Jult 1 since he was my second child I did everything I could to try to get labour going (which the hubby was against it was his first child and he was not ready for labour) I walked and walked and walked, I wnet up and down the stairs I washed all the walls in the whole house. I even cut the grass at my parents house (an acre) with a push mower. Nothing worked he was not coming out.

June 28, I was up for a long time trying to get baby to settle down, he kicked and punched (which was normal for him he did that alot, if I leaned into something he punched or kicked it, I always joked that he would have black and blue fists and feet when he was born) finally at 2 am he finally settled down suddenly, I remeber thinking wow that was a little weird I better talk to the doctor the next appointment. If only I had known the truth. I thought he sttled and went to sleep, so I went to sleep, the next day was uneventful I don`t know if he moved at all that day, as I had a very active 2 year old running around. When the hubby came home from work I lay on the sofa and had a little snooze. At 6 pm I woke up and needed the bathroom, In a half hour I had needed the bathroom 4 times, and I was begining to think something was up. I finally realized that my water had broke, and called the hubby who was cleaning the car.

He looked at me and said I`m just gonna finish this, I called my parents who quickly came and my father took big sister bear home with him and my mother came with us to the hospital. How glad I was that she was there......

I`m gonna finsh this tomorrow so tune in!!!

Thursday, August 14, 2008


Our Peditriacn, left us and went back to the states, now big sister bear has an ear ache. Apparently it is my fault he left, I have phoned everysingle peditrican's office, NONE of them were taking new paitents, One was taking new paitents but not out of their area, and one said find a family doc. That in it self is not an easy thing to do. Finally got ahold of one and we have an appointment next week. That is not goos enough for big sister bear she would like to move in with her dad. I am always the horriable one who doesn't care, you know sitting on the phone for hours trying to find a doc is a totally uncaring thing to do, appartently I should have not done anything that would have been better.

Like the stress level around here isn't high enough, we now need to scream at eachother and say horriable things, I wish big sister bear would realize how hurtful the things she says are!!!!

Wednesday, August 13, 2008

today was d-day

Today was the day that the doc called to let us know that, our big brother bear also has PH1 (primary hyperoxaluria) so now not only do we have on bear with this silent but deadly killer we have two. Our big brother bear and our lil sister bear both have it the big sister bear (a.k.a grumpy) and the baby bear do not have it. You see it is one of those things that both parents have to have the mutated gene for the babies to have so myself and daddy bear both have it, and big sister bear and baby bear are carriers of the stupid gene. Which means one of my parents is a carrier or maybe they have the diease who knows? Right now all is up in the air and we are slowly trying to pick up the pieces of our lives that have landed at our feet. Hopefully the doses of vitamin B6 will work for both bears. Then we will not have to face transplant in the near future hopefully never.

There are however a few things to be thankful for inspite of the bad news.
1. It was caught early most people don't catch it till they are in renal failure and we caught it now while their kidney function is still good.
2. Brycen does not have it, he is only a carrier.
3. The kids are really doing well with the amount of meds they take, it can be battle with lil sis bear sometimes but for the amount of horriable meds they have to take they are doing quite well.
4. And lastly they did not find this before my bears were born cause if they had I would not have my beautiful bears and I would not trade them for anything!!!!

I do not feel like doing anything today

I don't feel like doing anything today, I fell like poo and I wish I had stayed in bed today, Our big brother bear has PH1 just like his lil sister bear..

Tuesday, August 12, 2008

When I was 19, living alone as a single Mom I meet someone from my past, long story short we fell in love and this is the story of our very first child. Shortly after we became engaged I started to feel like I might be pregant, so I went to the pharmacy and bought a test. I took the test one morning before work and guess what + right away. I was so exictied we were not married yet but were going to be in just 2 and a half months. We were gonna have children soon because we did not want our big sister bear to be spaced to far from her siblings. Anyhow I could not get ahold of the so to be daddy bear so I phoned my best friend in the whole world and told her. She was just as exicited as I was, The only damper was this feeling in the pit of my belly, I even told her that I would not carry this baby to term...... I think God was trying to prepare me for what was to happen.

The being of my pregancy was rough, really rough, I was a single mom and I was working full time, pregancy has never been "easy" for me I have alwasy had really bad morning sickness and Mackenzie was no expection, I guess he wanted to have some memories of him. Not only did I have morning sickness I also had the flu, it was so bad that I had to pull over on my way to work a few times, as amatter of fact, my lead hand sent me home cause I spent so much time in the bathroom. I spent a whole week in the apartment on the sofa........... and the bathroom floor, I remeber daddy bear coming home and finding me on the floorin front of the toliet he asked if I was okay (cause people normal lie in front of the toilet when they are okay)

Once the morning sickness finally finished things went well until about my 7 month.............

Come back tomorrow and I will continue his story!

yesterday I ranted today I feel better

Yesterday I ranted but today I feel better, Just so everyoneès on the same page allow me to explain, first Mackenzie Wade is my son who was stillborn 10 years ago. My sweet baby was our ( my husband and myself) first baby together he was born at 39 weeks and 6 days, he had his cord around his neck, and we did not do an autopsy. Now we have been told that PH1 could have killed him but we will never know now. PH1 is what my middle girl bear was just diagnosed with last month, she is now taking 150 mg. of vitamin B6 ( we are working our way up to 250 mg.) and she is taking 15 ml. of polycitra (you should have read the warnings with this) I guess we have to decide between the two evils and this is the lesser. So we are still waiting for results for my two boy bears for thier testing. It has been 3 and a half weeks and waiting really is the worst!!!!! So yesterday I was feeling it all, the chance that my babies will need liver transplant and possiably kidney and liver transplants that is the only cure at the moment. It is pretty scary to think that I can not go to the pharmacy and get something to fix them, but that in order to toally cure them they will need new livers. Livers do not grow on trees and we have been told that myself and the daddy bear would not be able to donate ( I have yet to confirm this as I have also heard that its possiable from people who have done it for their baby bears)

So for now we try to keep from harming our lil sister bears kidneys by druging her with things that make her tummy hurt, and pray that the damage to our brother bears kidneys is not horriable and his kidneys can be saved, and we are praying that our baby bear does not have this horriable, silent killer!!!!!

Now that you have been updated you can see why I have bad days!!! Yesterday was one of them!!!!

Monday, August 11, 2008

It's gonns be a bad day

It's gonna be bad today, First baby bear slept in our bed again!!!!!!! That means he doesn't sleep and niether do I, Second I forgot to take my meds yesterday, and it feels like I forgot the day before too!!!! Third my middle boy bear is crying about everything today, and the oldest bear (grumpy) is really grumpy today I wish she'd go back to bed ( and she wants to have a sleep over today that is gonna go really well) I'm in a not so great mood, and I gotta get this place cleaned up and I wish the kid bears could go outside!!!!

My biggest pet peeve today is that people think that my baby bears are okay cause they "look" healthy!!!! I wish people would stop telling me everything will be okay, cause it's not okay!!! Here's the deal if Mackenzie could die then so can my other babies, We have no idea how things are inside my babies, The middle boy bears kidney function has not been checked in 3 or 4 years so we have no idea what it's at, I don't know the signs of kidney function eve are!!!!


I just don't wanna hear that everything is okay cause maybe they are in your world but they sure as h*** are not in mine!!!!!

That is my rant for now I hope no one has hurt feelings but that is how I feel right now!!! Thankyou for reading and Ihope you understand!!!

Sunday, August 10, 2008


Today was some day!!!! I feel over yesterday (don't ask me why) and really hurt my neck , boy have I paid for it today!!! I had a MAJOR headache all day, so my sweet hubby took the kids to the store (only to come home with more junk then we should week all month!!) anyway he took them out to leave me nap. Wouldn't you know it my oldest bear ( she's grumpy bear) called again and again, and again!!! When I don't answer it, that means A: I'm not home, B: I don't wanna talk or C: I didn't get to it. I will call back I promise. Needless to say the nap DID not help. I tried eating, still nothing. So now finally after 3 advil I have found some energy!!!!

Saturday, August 9, 2008

I'm fat

For allyou people out there who think I don't know I'm fat I already know that!!! I do not think it's funny when my kids call someone a name be it fat, ugly or anything else. I also do not think it is cute when your child does it!!!!

Today I was called the "fat lady" that is quite a moral boost, really think about it, someone says your fats, do you really think that we who are lager go around not realizing this!!!!


Friday, August 8, 2008

first post!!!

Okay so this is my very first EVER!!!
So bear with me as I figure this all out!! What a morning to start to, bearly slept cause the baby bear was up all night long, of course he is now sleeping while some of the middle two bears are up, which again translates to no sleep for momma bear and papa bear is already at work. Hopefully I can at some point catch a little snooze cause man am I gonna need it or instead of being Momma bear I'll turn into a gizzly bear!!!!