The Special Mother

	Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew." Finally He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!" "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side". "And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice." Stefani...............after you wipe away the tears.....this poem wll get you through some tough times. I love you very much. You ARE a great mom. You ARE a strong woman. You ARE just fine, even through the moments of sadness and emotional turmoil! You ARE the right mother for such a journey. Breanna is a lucky little lady to have been chosen for you! xoxo Kimberly

First Clinic visit

Relieved!!!!!  That is how I feel after our first visit.  Dr Filler has some concerns about her Blood Pressure still being a little high so he has prescribed one more med. for Breanna to take.  Breanna is holding in water so she is a bit bloated all over.  Not to concerned just making some minor adjustments. Limit fluid intake to 2 litres a day.  We have to  watch her suger levels as they are starting to go up,  She is still in the normal range but it is climbing.  And her sodium level is higher then we would like so we know we have to watch her sodium intake.  We have known this from the beginning.  We will be back in two weeks for another clinic visit and she has another test,  I forget what it is called at the mment but it is to see which valve is not working properly in her baldder causing the Bladder Reflux.  That will not be a fun test.  But she will get through.
Tonight we have increased her Dialysis fluid so that more fluid will come off.  Hopefully this helps.  But she had a great night.  No Crying at all.  Just a small,  oh it hurts mom.   She is sound asleep which is where I should be.  Goodnight.  Tired today!
    

mom is having an emotional day!

Breanna is doing great. Her blood pressure is good, she is gaining her weight back that they think she lost.  But mom is having a very very emotional day!!!!   Could it be everything is catching up with me?  Could it be the overload of information?  I have no idea.  Just one of those days.  My MIL has been admitted into hospital.  I can't really hang out there with her in  fear I will bring something home for Breanna to catch.  Although I did get up to see her quckley today and had a few words with the nurse in charge! Tell me or try to tell me I can't look at her chart,  go ahead and try to stop me.  Just need to make sure we are all on the same page.  Nothing but the best for my family.  Not only are we our childrens advocates, but we are fighting for our elders as well.  I can tell you one thing,  the Doctors and the nurses are not going to like me when they see me.  I want answers and I want them now.  Just off today.  If you look at me I might cry.  Can't help it.  Thats just the day I am having.  I am sure it will pass. And I am sure it won't be the last one. 
Breanna is hangin out with Grama Barb today.  I thunk they are making oatmeal cookies. And grama made sure she had the right snacks for Breanna while she is there.   She loves her Grammy Barb.

What an exciting week this haas been

Wow it has been a whole week since we have been home and so much has gone on.  We are still getting so much support and knd words.  On Saturday we were asked to be at the Riverside Minor Hockey's Annual 12 minute tournament.  They wanted to see Breanna be a prt of that.  Let me tell you,  It was ABSOLUTLY AMAZING!!!!!!!  We did so many interviews that day. It was crazy.  I think my last one was the only one that I did not cry.  on camara anyways!!!  Thanks for not airing all of it..lol  Breanna even did an amazing job in her interview.  One reported asked for one of the players for an interview so when I went in with the coach a couple of them raised there hands but Izzy Lajeunese (sp) stepped up tp the plate.   I wish his interview was aired on TV but for whatever reason they decided not to use his.  Listening to the wprds that came out of his mouth overwhelmed me.  To hear how this has affected the team.  To know that these boys care about Breanna to go above and beyond what typical 13 and 14 yr old boys do.  Thank you IZZY. 
Also today we found out that Breannas wish was granted through the Make A Wish Foundation.   We are going to Disney World!!!!!!!   She is SUPER excited for this trip.   We are just waiting to get some more info to decide on a date.  Breanna said lets go tomorrow!!!   I wish it were that easy kiddo.  I did try to include all of her family on this trip, Amber and Daniel,   Daddy and Deanna,  but was told no,  Breannas household ONLY.  Actually they said that anone could go,  but they would have to take care of their own trip.  And alot of specialties that Breanna will get they would not be included.  That sucks but I don't make the rules,  but I do enforce them.    This is all about Breanna.  Noone else.  Tonight we are going to watch her brother play in his 12 minute tournament.  She LOVES hockey!!!!!!  and mom is Tylers best cheerleader!!!!

Nights are easier

We have been home for almost a week and our nights are gewtting better.  Lastnight Breanna did not even feel her initial drain.  (thanks Mark)  Breanna is getting good at taking her own BP and all the stuff she has to do when getting ready to go on Dialysis and getting off in the morning.  She should not have to do this at the age of 13, but she does.  Lastnight we had a visit from a family from the Windsor Minor Hockey Association, where the 14 yr old boy Tyler, presented Breanna with an official Get well card.  It is HUGE.  All the players signed it for Breanna.   I would liek to see Breanna ack in school in two weeks.  that is the next goal she is working on.  We will start off parttime until her body can get used to it. 
One step at a time they say.  I don't think I can go any slower.  

First night home

5 long weeks and we are finally home.  I had so many emotions going on when I heard it was that time.  We didn't tell Breanna right away becasue well we wanted to make sure.  She was down in the art room painting. I went down there aftter packing half of her room.  As aI was sitting hthere she just new something was going on.  She looks at me and says,  mom whats going on?  I said nothing why.   "Are we going honme?"   I could not stop the smile from coming across my face.  She started crying.   I started crying, again!
We got home and then panich set in,  all this equipment, all this set up, all these supplies.  HOLY SHIT!!!!!!!!
I started with the basic,  what do I need for tonight?   Bonnie helped me set up the first set of supplies.  Then we had the task of whats for dinner.  I decided Pizza,   Ordered seperatepizzaa for Breanna with very little sauce and cheese.  She loved it!!
Our first night at home was a great success.  She did not wake in in pain.  she had maybe 5 mintures of general pain in the beginning but we are very happy with how our night went.
Heres hoping for a second good night!!!

One week of PD

Its been a very long week.  I am so tired and cannot wait to get home.  But Breannas body is not working with us on this.  She is on new meds to help with the pain in her legs due to the nerve pinching that is going on.  She is also now on New meds to help with her anxiety.  The first night on the  meds was not to bad.  She had some pain in the begining of treatment but then slept for most of the night.  Tonight was a different story.  Dr Sharma decided to up the dose of the Anxiety meds and this just made her stoned.  It didn't really kick in until about 2 hours after taking it.   She was complaining of chest pain, hard time breathing because it hurt,  She could breathe no problem but it hurt to do so.  Now she fights with me to go to the bathroom.  She is adament she has to go  right now,  she is in the middle of a fill and I tell her to wait until the fill is done.  Ya she was not having anything to do with waiting.  So dad stepped in and said drag the machine to the bathroom, and that we did.  I carried Breanna and dad pushed the machine and made sure no wires got pulled or tugged.  We don't need more issues.  While going ot the bathroom she is very dizzy.   Once done, she is even more dizzy.  Has a hard time standing up,  I had to have dad carry her pretty much to her bed, where she fell onto and grabbed onto me with death grip because she did not like the way she was feeling.  She was so dizzy,   she could not see.  I called the nurse in a panic and told her what was going on.  She started to do some testing for stroke.  All her levels were fine, Blood pressure was ok, Heart rate was good.  She was just seeing double.  Checked her chart and the nurse realized her meds were doubled and this is the issue.  I had to calm Breanna down so I politely but quickly asked dad to leave the room. Breanna does not do good when there is more then one of us in the room fussing over her.  Once it was just me and her I got her to calm down.  She had a few meltdowns as she was scared.   She wanted to know what was going on with her head.   She was scared for herself.   I got her to calm down and she finally did and laid there relaxing.  Dad came back and sat with her until she fell asleep.  I left the room for awhile and when I came back in she was in the middle of a drain and sleeping through it.   THANK YOU UP ABOVE.  I left the room again and when I cam back both Breanna and Dad were fast asleep.   I left for the night.  Said good night to the nurses.  And now 2 hours later I am still wide awake. Now that I have this off my chest hopefully I can get some sleep.   I worry about my baby girl so much it hurts!!!!!!!!!!!!!!!!MOM

Finally an update from DAD...

I suppose that my posting on Facebook isn't the only place people are tuned into, sorry everyone I have been ultra busy and will try to be on here much more often. Her past couple of weeks of Hemo Dialysis have been essentially painless and calm. She would go on at around 12-1:00 each day for 2 hours and get her body cleansed. On Hemo, she would be able to have some of her favorite foods which were restricted in her diet. One day a slice of pizza, the next some regular chips, and so on. What we take for granted she is now not able to enjoy. Her journey into the Peritoneal Dialysis world has been a very tough one on her this week to put it lightly. Mom was in with her for Monday, Tuesday and Wednesday, she had no sleep for these days but a few minutes here and there. On Tuesday it was so bad she nearly called me to help out. I to this day have never imagined the amount of pain she would endure with this treatment until I saw it Thursday evening myself. This pain was unbearable to watch, but fight through it she did, crying in pain she had to. The pain medications had not done or taken the edge off like planned. It took Mom to be on a web site with other patients of Peritoneal parents to suggest that some Tidal fluid be left in the Peitoneum. This fluid would now be left in at each cycle after Breanna is filled, run through her Dwell period of 40-50 minutes. We also that we needed some better time management for getting her prepared for the night cycles. We started her Tylenol at 1 hour before starting and her Atavan, along with the Gabapentin which is for nerve blocking. Her cramping in her left leg had been excruciating for her treatments so far this week. The night went without a hitch and not a big sign of pain except for her initial drain. The whole night was without any pain and she didn't feel a thing...Have to go to the movies right now, ciao