I haven't emailed since the start of Kourtney's school. When Kourtney first started school in September I noticed that her blisters were looking infected but this time they looked different and Kourtney was in a lot of pain. We had to put her on Tylenol with codeine just so she could walk because her knees were blistered and infected looking. The skin swabs came back as strep infection and she was treated accordingly. She even sang and danced at our church homecoming despite being in an enormous amount of pain. (check out the attachement) . The next few weeks we struggled with esophagus an eye problems. The nurses were doing great with Kourtney at school and I was enjoying the freedom of having Kourtney out of the house and in a safe environment.
We then had our annual family reunion in Alberta. I noticed that Kourtney was starting to look infected again and we had to take her to the hospital in Innisfail (where Sharon and Blair live) to get more antibiotics. This time around Kourtney became very very ill. She could hardly move out of bed and she was very lethargic. I took her to 2 Dr's in Abbotsford and they didn't know what to do. ( At this time the teachers were on strike. Todd wasn't getting paid so I worked full time, as we were unsure how long the strike was going to last. It ended up lasting 11 days. I ended up taking Kourtney to Children's Hospital. The dermatologist and the nurse spent 2 hours with us. I gave them a list of my concerns and walked away feeling like I was beginning to make resolutions. One of things that came out of our meeting was that Kourtney's strep infections were not being cleared up because one of her caregivers was colonizing strep in their throats and reinfecting Kourtney. (Step A in the throat usually has no symptoms but on the skin can become deadly as Strep A is what causes flesh eating
disease). So we had to swab everyone who walks into the house. It ended up that it was Todd and Shaelyn who were the carriers. Everyone thought for sure it was me bringing it home from the dialysis unit. I was pretty convinced it wasn't me because I do a lot of swabs at the
unit and I never see strep A. Also we wash our hands a lot at work and we wear gloves.
So started the long treatment of antibiotics, 6 weeks for Kourtney and 2 weeks for Shaelyn and Todd. Todd and Shaelyn are both cleared. Shaelyn was a little trooper in faithfully taking the antibiotics. She swallowed capsules and was so happy taking them because she knew it would help Kourtney. Kourtney will be done her 6 week course in a couple of days. The antibiotic seems to have warded off colds this last 6 weeks as she hasn't had any. No esophagus problems and no eye problems. Last Saturday I did some reflecting and cautiously said that things were starting to feel a bit normal. Normal for me is sleeping through the night sending Kourtney to school daily and me having a little bit of time to myself. She had a fall at school during that
time and had to get 2 stitches in her head. That even felt normal. BUT THEN..............
Last Monday I received a phone call that Kourtney had fallen at school again. I went up to the school. Kourtney got knocked down by a boy and fell onto her bottom blistering her bum and back of her legs . I have never have seen her bum that badly blistered. The pain she had was incredible. She could hardly move her bum was sore. The kicker of it all was that there was no adult present with her when she fell and her friends had to look for the nurse. I find this very difficult to take as Kourtney has never been allowed to walk in a hallway by herself and why wasn't the nurse present? The next blow came when all 3 nurses that are trained to look after Kourtney were sick or unavailable for the whole week and I had to look after her with no help for the full week. I had to give up shifts at work , couldn't take Kourtney anywhere so I was stuck at home for the whole week. Todd ended taking Friday off to give me a hand as Shaelyn ended up with an ear infection and needed more antibiotics. As I was home all week I began thinking that I really should start getting paid when the nursing hours are not being used up and when I do the training of the nurses (which is ongoing). This has been met with a lot of resistance so far but I am willing to start fighting for being compensated when my child isn't getting the care she has been approved for and we have to give up shifts or take days off when she can't be in school or have the necessary help at home.
I guess what it boils down to is we need some prayer as we fell very frustrated once again. Kourtney's skin was looking good with the antibiotics but now because of the pain and her being home all week has really broken down again.
We also have to decide if we should keep the same nurse with Kourtney (she has two nurses and the one that Kourtney had this last fall with I have had red flags about all along while the other one has been awesome and professional).
Also, in my heart I felt that I need to homeschool Kourtney. I just feel that I need to have her home with me at least a year and get things back on track. I think this has been reinforced since her fall which was in my mind pure negligence and not just "one of those things". I realize that the socialization part is very important but it would prevent having weeks like this where I don't have a structure for her at home and ends up being frustrating for Shaelyn Kourtney and myself.
Pray for wisdom.
Some things that have been positive is that Kourtney has started piano lessons. Despite the contractures and webbing in her fingers she has managed to use a key board and has done quite well (music comes from the soul). Kourtney has blossomed in her writing and printing skills over the last 3 months. She has improved greatly in these areas. Also Kourtney and I will be attending a skin disorder camp in Philidelphia. I will go as a volunteer, we have been accepted and looking forward to going. Also we will start taking Kourtney to a physchologist that deals with chronic pain management. I am looking forward to getting some new ideas for her. Also Kourtney will be having surgery December 19th.
Anyways I know that you will keep us in your prayers. The stress has really taken its toll on everyone. We are ready for some relief soon.
Thanks for being interested!!!! Janelle
We then had our annual family reunion in Alberta. I noticed that Kourtney was starting to look infected again and we had to take her to the hospital in Innisfail (where Sharon and Blair live) to get more antibiotics. This time around Kourtney became very very ill. She could hardly move out of bed and she was very lethargic. I took her to 2 Dr's in Abbotsford and they didn't know what to do. ( At this time the teachers were on strike. Todd wasn't getting paid so I worked full time, as we were unsure how long the strike was going to last. It ended up lasting 11 days. I ended up taking Kourtney to Children's Hospital. The dermatologist and the nurse spent 2 hours with us. I gave them a list of my concerns and walked away feeling like I was beginning to make resolutions. One of things that came out of our meeting was that Kourtney's strep infections were not being cleared up because one of her caregivers was colonizing strep in their throats and reinfecting Kourtney. (Step A in the throat usually has no symptoms but on the skin can become deadly as Strep A is what causes flesh eating
disease). So we had to swab everyone who walks into the house. It ended up that it was Todd and Shaelyn who were the carriers. Everyone thought for sure it was me bringing it home from the dialysis unit. I was pretty convinced it wasn't me because I do a lot of swabs at the
unit and I never see strep A. Also we wash our hands a lot at work and we wear gloves.
So started the long treatment of antibiotics, 6 weeks for Kourtney and 2 weeks for Shaelyn and Todd. Todd and Shaelyn are both cleared. Shaelyn was a little trooper in faithfully taking the antibiotics. She swallowed capsules and was so happy taking them because she knew it would help Kourtney. Kourtney will be done her 6 week course in a couple of days. The antibiotic seems to have warded off colds this last 6 weeks as she hasn't had any. No esophagus problems and no eye problems. Last Saturday I did some reflecting and cautiously said that things were starting to feel a bit normal. Normal for me is sleeping through the night sending Kourtney to school daily and me having a little bit of time to myself. She had a fall at school during that
time and had to get 2 stitches in her head. That even felt normal. BUT THEN..............
Last Monday I received a phone call that Kourtney had fallen at school again. I went up to the school. Kourtney got knocked down by a boy and fell onto her bottom blistering her bum and back of her legs . I have never have seen her bum that badly blistered. The pain she had was incredible. She could hardly move her bum was sore. The kicker of it all was that there was no adult present with her when she fell and her friends had to look for the nurse. I find this very difficult to take as Kourtney has never been allowed to walk in a hallway by herself and why wasn't the nurse present? The next blow came when all 3 nurses that are trained to look after Kourtney were sick or unavailable for the whole week and I had to look after her with no help for the full week. I had to give up shifts at work , couldn't take Kourtney anywhere so I was stuck at home for the whole week. Todd ended taking Friday off to give me a hand as Shaelyn ended up with an ear infection and needed more antibiotics. As I was home all week I began thinking that I really should start getting paid when the nursing hours are not being used up and when I do the training of the nurses (which is ongoing). This has been met with a lot of resistance so far but I am willing to start fighting for being compensated when my child isn't getting the care she has been approved for and we have to give up shifts or take days off when she can't be in school or have the necessary help at home.
I guess what it boils down to is we need some prayer as we fell very frustrated once again. Kourtney's skin was looking good with the antibiotics but now because of the pain and her being home all week has really broken down again.
We also have to decide if we should keep the same nurse with Kourtney (she has two nurses and the one that Kourtney had this last fall with I have had red flags about all along while the other one has been awesome and professional).
Also, in my heart I felt that I need to homeschool Kourtney. I just feel that I need to have her home with me at least a year and get things back on track. I think this has been reinforced since her fall which was in my mind pure negligence and not just "one of those things". I realize that the socialization part is very important but it would prevent having weeks like this where I don't have a structure for her at home and ends up being frustrating for Shaelyn Kourtney and myself.
Pray for wisdom.
Some things that have been positive is that Kourtney has started piano lessons. Despite the contractures and webbing in her fingers she has managed to use a key board and has done quite well (music comes from the soul). Kourtney has blossomed in her writing and printing skills over the last 3 months. She has improved greatly in these areas. Also Kourtney and I will be attending a skin disorder camp in Philidelphia. I will go as a volunteer, we have been accepted and looking forward to going. Also we will start taking Kourtney to a physchologist that deals with chronic pain management. I am looking forward to getting some new ideas for her. Also Kourtney will be having surgery December 19th.
Anyways I know that you will keep us in your prayers. The stress has really taken its toll on everyone. We are ready for some relief soon.
Thanks for being interested!!!! Janelle
