Meet Breanna Corinne Arthurs

September 19, 2002 - January 18, 2005

Krabbe Disease

I first noticed a seizure when she was only 4 weeks old, October 10, 2003, it lasted only seconds. Then I was not even sure it was a seizure now i know.

After that, things went a bit faster. She never gained the ability to hold up her head and she had major eating problems, she kept throwing it all up, and sucking was an issue. She as only 4 lbs 12 on. when we took her home and the health nurse told us it was because she was so small. Her boby temp started to go down shortly after she turned 6 weeks, around her lips kept going purple. I have not heard of many Krabbe babies with extremly low temps but Breanna had them and still does. She never cried in the beginning. I had to wake her to feed her and after I layed her back down she would just go off to sleep, This must be to good to be true I remember saying. Her first ear infection was when she was only 4 weeks old.

They say that babies with Krabbe disease does not start to show symptoms until they turn around 2 months, I however, know Breanna's started much sooner.

December 2002, Bree was 2 1/2 months now that was when the crying started oh boy, unless you have heard a Krabbe baby cry you have heard nothing. Samantha, my first born was colic and this did not even compare. In December it was just crying for maybe 6-8 hours a day, yes that sounds like a lot but nothing compared to what was to come. She seemed to be in so much pain, we tried everything.

we tried to change her formula we tried gripe water, we tried oval drops, tylenal. we just did not know what to do.

Bree is now 4 months old

Breanna started to smile and laugh in January, it was a real task to get her to smile laugh but when she did it, it was like music to our ears. so pure, sweet, innocent. she use to love when her daddy would put her in her car seat and run her around the kitchen, oh, she just laughed. I can still hear it...

January was also when things got so bad that we searched and searched for a doctor however, none would take her on. We took her to the hosipal weekly, she was twitching lots (new we know they were melconic jerks) her chest was always so loud, vomiting like crazy, and crying, crying, crying. oh, and was was still unable to move at all. not hold her head up or then even hold our finger. The hospital would always do x-rays and then send us home saying they found the problem it is an ear infection. I was getting so sick of hearing that nothing else was wrong, because something was terribly wrong. I still cannot figure out how a hospital can look at a little baby that cannot even hold there head up and not do something about it.

Bree was 7 months old

at this point I had called every doctor in the phone book even different cities but none would take her on. My husband call his doctor and told him I will give up my spot for her but Brian's doctor just said if you give up your spot then that is just one less patient that was in Woodstock dr. tham. The last day of April 2003 was the last day she would ever smile or laugh, just like that. We were on our way to the health clinic for her immunization and she was laughing and smiling, she was happy. I told the heath nurse my concerns and all she said is well she must be immunizated. Well that was when the crying changed. on top of loosing her smile and laugh she also started to cry non-stop. now 18-23 hours a day. She cryed so much she did not even have a voice anymore at all. Her poor sweet voice was gone. You could see her mouth in the crying motion going up and down and hear very little. oh, my heart was breaking for her. I know then She was not going to be with us long. I stayed up days and days with no sleep I would rock her in the glider and sing, sing and sing. You are my sunshine and mommy's going to buy you a mocking bird. As I cried right along with her.

Bree now is 9 months old

In the beginning of june I notice again another huge seizure and paniced I called a dr from the phone book, I have called before but this time I was not taking no for an answer. I said to them, "something is very very very wrong with my little girl" and he said bring her right in. This doctor agreed with me something real bad was wrong. They got us in to see a ped. doctor and believe it, it only took 1 week to get it. When we got there he told us to get her to the emerg. ASAP, he said she sounded like she was in respitory distress, well, little he knew she has sounded like that for months now. So we took her to a different hospital the London/Ontario, Childrens hospital, Because of BRee's non-stop crying her heart rate was up to almost 200. They took x-rays right away and they were clear, so they called the neurologist well that got everything rolling. The neurologist witnessed a seizure and admitted her that day.

some test ran were: -MRI (adnormal white matter)
-tons and tons of blood work (all test were normal)
-skin biopsy (lipid's adnormal)
-earing test (inconclusive because of her crying)
-eye test (she see's little to nothing, they said blind)
-EEG (adnormal)
-swollow test (she had a delayed swallow, not safe for her to take anything orally)
I know I am forgetting some but you get the idea.

Oh my God they did so much to my little princess, my heart again was broken... They could not get blood from her arm so they had to use her head. I could not stay with her when they did that I would have punched someone out...lol.. Now Breanna was not able to suck anymore so we now have to use thickit in all of her formula. I would put it on a spoon and put it in her mouth. then I would have to rub her neck to get her to swollow it. NOW HOW NORMAL IS THAT. My heart is just breaking for her.

Dr. leven came in every morning saying the same thing, "how is Breanna the irritable doing this morning" How true. I wanted her to be happy again so bad. The Dr. started her on lots of meds including: glycoprrolate (for secretions) Domperidone (stomach problems) Clonazapam (seizures),zantac (reflux), and well the crying continued.

Dr. Leven came into our room the day before we went home and said he wanted to talk to us and he took us to another room to talk to us. Oh that is never a good sign. He said Breanna has a terminal illness however he does not have a name for it yet, he said she would most likely not make it to 2 years old.

I pretty much know that before he told us but that was real hard to take. We took her home a got a camcorder and a camera and went crazy with them..

Bree was now 10 months

July 2, 2003, now she is 10 months old and something strange happened today. She was sitting with her grandma and it was quiet. I ran over to her I thought something was wrong, well she was sleeping and well, that was it for the crying , just like it came it ended. Now instead of crying all the time she is now sleeping all the time. I think this is the point where Breanna went from Stage I to Stage II. She was now only awake for approx 2-4 hours a day. WE continued to fight for a diagnoses and Our neurolgist sent us to the metibolic doctors.

August we got a suction machine for her, which is now our best friend. If it was not for the suction machine she would not have been here for as long as she was. We started with just mouth suctioning and advanced to the deep suction. October was when she got the G-Tube placed and she no longer takes anything in her mouth. The risk of asperating was too high because she was losing her abilities to swallow. Because of some problems she stayed for 1 1/2 weeks. normal stay is 2 days.

Bree now is 15 months old

December 23 was her first major pnomonia and she was admitted in the PCCU. She was so sick, I stayed with her again like I always did. she was released January 1, 2004.
16 months old now

January 16, 2004 was the day We go the horrible news. our little breanna has Krabbe disease. I had done so much research I know what Krabbe disease was, It was one of the diseases I was praying she did not have, with a life expectacy of 16 months She was 16 months the day we got her diagnoses.

WOW, WOW, Breanna is now 2 years and 4 months,

Well today we are at January 10, 2005, and Bree is even stronger then one year ago. We go into this year with just hopes and dreams.

as of now the meds Bree is taking:
-glycoprrolate
-domperidone
-clonazapam
-previcid
-peg-lite
-poly-vit
-ventlyn, via nebulizer, and chamber
-flovent, via chamber
Bree's diet:
450 calaries/via g-tube
-Nutin junior w/fiber
-1 tablespoon of skim milk power
-poly-vit
Machines Bree uses for her comfort:
-suction machine
-nebulizer
-oxygen
-feeding pump

Breanna's abilities have stayed pretty much the same. She can now hold our finger, and she has personality, oh, my she has a very strong personality. She can hold up her head and she is real good at telling us she is not happy. As of now Breanna has survived over 7 pnomonia's all from asperation, ear infections monthly, and she is even stronger now then ever.

January 18, 2005 - Bree is 2 years 3 months and 30 days

This is part of Breanna's journal on caringbrige
www.caringbridge.org/hi/breanna

Our little angel Bree flew up to heaven this morning January 18, 2005. Our little Bree never woke up she had been sleeping since Sunday at 10 am. We ran her up to the emerg early Monday morning her seizures got so bad.

Her O2 level was in the 60ish heart rate 189. Her blood presure kept dropping, so we made the choice to bring her home and no vent. We told the doctors to do what ever they could do for her. They gave her 15 litre of O2 at 100Her color was still very poor and the doctors do not think she will make it much longer. the xrays were horrible. You can not even see her left lung. so a major asperation pnomonia, and a bladder infection.

We they called us an ambulance and we took her home. We continued the IV antiboitics at home. Our little Bree was fighting so so very hard. Her breathing still very shallow and fast. at 4:00 am on Tuesday Bree was making some noises I have never heard, i gave her some Motrin. after I gave her the motrin she made 3 beautiful noises, beautiful little sighs, I keep thinking she must of saw Heaven. at 4:20 she made a large gasp, I was holding her and praying, I just kept telling her please Bree please Bree dont go, I swear I never would say that to her and let her go when it is her time, but when it comes right down to it I could not, well that was her very last breath. this happened so quick I was begging her to breath, but she had already seen heaven. I put the stethoscope to her chest and I could no longer get a heart beat that was at 4:21. I huged her and put her down. I went upstairs to get Brian, I kept her O2 on just incase. he came down and I again picked her up and check her heart rate and still no heart rate. Oh, no, not now. not ever. my beautiful little Bree has left us however she has gone to a far better place. we called her nurse to have her pronoused. I do not know the time she was pronoused, I know it was 4:21 am.

At 4:21am tuesday she could fight no longer. Breanna got her wings and flew to heaven today... Fly high my baby girl. I love you so much.

Oh she is soooo missed, sooooo loved. there is a huge void.

This day has been so very very hard. This house seems so empty without our little angel here.

I have added Brian and I's favorite pictures in her photo album so you can take a look.

Brian's favorite

My favorite!

Thankyou

Corinne, Angel Bree's mom