Today I am thankful for Zoe's treatment. Although there are negative aspects to an immuno-suppressant drug it has been proven to me this week that Zoe NEEDS her dose every 2 weeks without delay! She spends a day in hospital every second Tuesday.
The hospital forgot to order the Meds last fortnight and didn't realize until the day before Zoe was to to go in for her infusion. Therefore her appointment was cancelled and it became a waiting game for the Lab to contact the hospital saying when the medication would be ready.
Luckily for us it only took 4 days. Zoe had been in pain from the Friday before she was due for her treatment. It was a long week and a half, with Zoe crying every day.
Her knee started to swell on Wednesday, which is obviously why she was crying and walking a little funny.
On a positive note the Dr was able to see that her knee was swollen, which is not always the case! A lot of the time it is us telling the Dr what we see but them not actually seeing it for themselves, so this time I know it was taken into consideration.
Today Zoe seems happier. Her knee is still inflamed and she has started to cough again but she has stopped crying and I can rest a little. ;°)
samedi 19 novembre 2011
mardi 8 novembre 2011
5 days and no pain :)
Ok This will be short and sweet. I am very happy to say that Zoe has had 5 days in a row where she has not complained of pain! She went to Hydrotherapy yesterday and worked very well and had a lot of fun.
She hasn't eaten very much today and she slept 4 hours for her nap this afternoon.... but I think she is just very tired from Hydro yesterday.
I have put a Humidifier in her bedroom to help her lungs a little and she is still taking cortisone for her lungs also. She will finish the course of cortisone in 2 days and I hope that her lungs can have a break before getting another infection.
I hope I don't Jinx her by writing this but I can tell you that it has been a much needed stress relief for me, to not have her in constant pain. :D
Fingers crossed next week continues this way.
xx
She hasn't eaten very much today and she slept 4 hours for her nap this afternoon.... but I think she is just very tired from Hydro yesterday.
I have put a Humidifier in her bedroom to help her lungs a little and she is still taking cortisone for her lungs also. She will finish the course of cortisone in 2 days and I hope that her lungs can have a break before getting another infection.
I hope I don't Jinx her by writing this but I can tell you that it has been a much needed stress relief for me, to not have her in constant pain. :D
Fingers crossed next week continues this way.
xx
lundi 31 octobre 2011
Frustrated
Saturday night Zoe started breathing loudly. Again no fever (as it is now impossible for her to get them), no complaints, she had been grumpy and tired.... but she is 2 years old and that is not unheard of. (Lets go back to the beginning).....
When Zoe was diagnosed we had worked out her pattern; every 5 to 6 weeks she would get very tired, stop eating, have flu like symptoms with cough and runny nose, cry and cuddle a lot more. She would move around less and then between 3 and 5 pm she would get a fever daily which would last around 8 days. Her fever would spike 3 or 4 times in a 12 hour period, reaching between 39° and 42°. This of course would be accompanied by extreme pain all over her body. This pattern continued during her first treatment (Kineret) of daily injections. The specialist realized that her illness was stronger than the medicine so they put her on a medicine that she really was not meant to be given because the studies on the drug was not trialled on children anywhere near her age. We didn't get much of a choice, we just had to trust in what the doctors suggested. They told us her immune system would be affected greatly and that the drug would stop her body from having a fever even when she was sick.
So she started on Actemra and although she has had pain on and off the pattern had broken. We started thinking that the medicine was doing everything that Kineret couldn't do. 6 and a half weeks ago (10 months in to her new treatment) she got her first flare (without the fever). She was tired, grumpy, stopped eating, was complaining of pain in her body, stomach and eyes and started coughing which ended up as a chest infection. Now Almost 7 weeks later she is tired and grumpy, gone off her food and has started coughing again... is it a coincidence or is the disease getting stronger than her medicine again.
I have questions and I get no answers and then the intern who saw us today had absolutely no interest in listening to what I had to say and I got really pissed off with everything. I wanted to stop Zoe's treatment and never go back to the hospital. Her immune system is so low that she keeps getting sick and I am over it all. I want some assurance that giving this treatment is not harming her more than helping her and that it is doing something good... because right now I am not so sure. I feel sad and annoyed.
When Zoe was diagnosed we had worked out her pattern; every 5 to 6 weeks she would get very tired, stop eating, have flu like symptoms with cough and runny nose, cry and cuddle a lot more. She would move around less and then between 3 and 5 pm she would get a fever daily which would last around 8 days. Her fever would spike 3 or 4 times in a 12 hour period, reaching between 39° and 42°. This of course would be accompanied by extreme pain all over her body. This pattern continued during her first treatment (Kineret) of daily injections. The specialist realized that her illness was stronger than the medicine so they put her on a medicine that she really was not meant to be given because the studies on the drug was not trialled on children anywhere near her age. We didn't get much of a choice, we just had to trust in what the doctors suggested. They told us her immune system would be affected greatly and that the drug would stop her body from having a fever even when she was sick.
So she started on Actemra and although she has had pain on and off the pattern had broken. We started thinking that the medicine was doing everything that Kineret couldn't do. 6 and a half weeks ago (10 months in to her new treatment) she got her first flare (without the fever). She was tired, grumpy, stopped eating, was complaining of pain in her body, stomach and eyes and started coughing which ended up as a chest infection. Now Almost 7 weeks later she is tired and grumpy, gone off her food and has started coughing again... is it a coincidence or is the disease getting stronger than her medicine again.
I have questions and I get no answers and then the intern who saw us today had absolutely no interest in listening to what I had to say and I got really pissed off with everything. I wanted to stop Zoe's treatment and never go back to the hospital. Her immune system is so low that she keeps getting sick and I am over it all. I want some assurance that giving this treatment is not harming her more than helping her and that it is doing something good... because right now I am not so sure. I feel sad and annoyed.
mercredi 19 octobre 2011
Zoe's Routine at the hospital every 2 weeks.
Zoe Battles pain every day. If you have ever broken a bone or torn a ligament you may have an understanding of what she feels. Apart from that her Treatment days are also filled with uncomfortable poking and prodding but she has taken control of that pain by wanting to do everything herself. The medical staff are wonderful with her and they find it cute that a 2 year old would try and do their job. Willy and I are so proud of her and when we were making this video I was filled with unbelievable pride and of course sadness that she is at ease with all of this. I hope you enjoy the video of our beautiful budding 'Princess Doctor'.
lundi 17 octobre 2011
The cold is settling in her bones.
It has been a while since I wrote last. Although this blog is good for me because I get my feelings out, I guess sometimes I just want to pretend that nothing is wrong, that Zoe is as healthy as her big brother and Sister. So I shut myself off and therefore I wasn't writing.
We had a bit of a shock 3 weeks ago... We turned up to Zoe's Ophthalmologist appointment and we were told that the disease has now started in her Eyes. I was never really worried about that even though we knew there was a risk. I have read as much as I can on this illness and the percentage of People (young and old) with Stills which affects their eyes (Uvitus) is almost unheard of.... what I mean to say is that there is like 5% of cases! Ok so there are not many people out there with Systemic JIA and again Zoe's age of diagnosis is also extremely rare but I figured with a percentage like that we really didn't have much to worry about.
Willy on the other hand has been petrified that Zoe will go blind from the beginning. We now know after talking to her specialist that we just need to be very vigilant when it comes to her eyes.. If she says she has pain we take her straight to the hospital, they will then give her cortisone drops and if that doesn't help they will inject cortisone into the eye... and this can save her from going blind.
It is now 3° when we wake up and it takes most of the day for the temperature to reach around 15°. Of course this plays a big part in how much daily pain she endures. Our fire has been out of order because the pipping had holes in it but a new one was installed today, so I will light a fire for her as soon as we get home from Physiotherapy tonight.
It is treatment day tomorrow and with any luck all will go perfectly.
This was an entry just to touch base but I will write more another day. x
We had a bit of a shock 3 weeks ago... We turned up to Zoe's Ophthalmologist appointment and we were told that the disease has now started in her Eyes. I was never really worried about that even though we knew there was a risk. I have read as much as I can on this illness and the percentage of People (young and old) with Stills which affects their eyes (Uvitus) is almost unheard of.... what I mean to say is that there is like 5% of cases! Ok so there are not many people out there with Systemic JIA and again Zoe's age of diagnosis is also extremely rare but I figured with a percentage like that we really didn't have much to worry about.
Willy on the other hand has been petrified that Zoe will go blind from the beginning. We now know after talking to her specialist that we just need to be very vigilant when it comes to her eyes.. If she says she has pain we take her straight to the hospital, they will then give her cortisone drops and if that doesn't help they will inject cortisone into the eye... and this can save her from going blind.
It is now 3° when we wake up and it takes most of the day for the temperature to reach around 15°. Of course this plays a big part in how much daily pain she endures. Our fire has been out of order because the pipping had holes in it but a new one was installed today, so I will light a fire for her as soon as we get home from Physiotherapy tonight.
It is treatment day tomorrow and with any luck all will go perfectly.
This was an entry just to touch base but I will write more another day. x
dimanche 25 septembre 2011
And its only the beginning!
About a week and a half ago Zoe started coughing a little. It was no surprise because Mia had been coughing for around 15 days prior and we figured Zoe would pick it up also. Mia didn't need any medication or anything and she got over it very quickly.
I wasn't worried about Zoe either because although she was coughing a little she didn't have a runny nose and didn't complain (Keep in mind she can no longer have any type of fever, due to her treatment). However she had been in a lot of physical pain and wasn't eating very much over the last 10 days. She was complaining of stomach aches, sore eyes etc.. (Pain and a reduced apatite is also part of her illness. She has also lost 300g in 10 days).
Last Tuesday was treatment day and we rock up to the hospital with everything fresh in our minds to talk to the Doctor about. They started their physical exam and they were listening to her chest and the eyebrows go down in a concerned V... An x-ray was ordered immediately and off we went rolling Zoe through the corridors in the 'BIG GIRL' wheelchair.
This time she was a little scared of the x-ray machine so I put on the led jacket and stood by her and held her hand. The first thing we noticed was the size of her heart... it was huge! nothing was said about the size of her heart though so we are guessing that was normal. The lungs however were not so normal.
The whole bottom half of her left lung was white with white blotches over the top half and the right one. Of course we had no idea that it should have been any different (since X-rays are black and white) but we were soon to find out that she had a bad Lung infection (this came as a shock because she didn't look sick at all and her cough wasn't really that bad).
We waited for the physiotherapist to come down to see her and she is the type of person who should be banned from talking with Parents. She blurted out "The bottom half of her Lung is not functioning"! she then looked at my face and said "but it's ok, don't worry we just need to fix it"! umm ok says me.
Her stomach aches are from the Advil. This happens frequently with Anti-inflammatory drugs. It can cause Ulcers of the stomach etc.
Anyway home we trot with a prescription in hand for antibiotics (Lungs) another medicine for her stomach and another prescription for Physio (Clapping). We started the antibiotics that night and the little brat spat it out three times!! I was beside myself. For any parent who has had the unfortunate experience of staying a few days in hospital with their sick child AND everyone else's you would surely agree it is a nightmare! not only can you not sleep because the lights are so bloody bright but you also have the poor kids who aren't lucky enough to have their Mum/Dad spend the night with them crying all night. So here I was thinking 'damn it kid, stop spitting your medicine cause if we have to spend the next few days in hospital I will be one cranky Mummy'!
Well we finally tricked her with a yoghurt and I breathed a sigh of relief. The next day was the clapping... What can I say about that? The most barbaric form of physio I have ever been witness to... And it didn't make a lick of difference she didn't spit anything up. She kept swallowing what ever she did cough up, but the physio was meant to do a gentile form of clapping to squeeze the gunk out of the bottom of her lungs but she was up on top of the table pushing with all her might. Zoe was bright red and I thought her eyeballs were going to fly out of her head! NOT EXAGGERATING!
I have to call the hospital tomorrow and find out what the next step is. We may have to do another x-ray to see if she is getting better or change antibiotics. I just hope we don't have to subject her to more clapping. She has to go through so much already I can't stand to see her suffer through that as well.
The doctor told us this is just the beginning because the flu season is upon us and Winter is coming fast. First 3 weeks of school and she is out with a lung infection.. I have a feeling this is going to be a LONG winter. Once we get her infection under control she has to have a flu shot which can also be dangerous for her but at least she is being seen regularly by her Dr. We just have to be more vigilant! No more letting people kiss her. So back off people! Keep your Jimmy Germs away from my baby girl ;)
I wasn't worried about Zoe either because although she was coughing a little she didn't have a runny nose and didn't complain (Keep in mind she can no longer have any type of fever, due to her treatment). However she had been in a lot of physical pain and wasn't eating very much over the last 10 days. She was complaining of stomach aches, sore eyes etc.. (Pain and a reduced apatite is also part of her illness. She has also lost 300g in 10 days).
Last Tuesday was treatment day and we rock up to the hospital with everything fresh in our minds to talk to the Doctor about. They started their physical exam and they were listening to her chest and the eyebrows go down in a concerned V... An x-ray was ordered immediately and off we went rolling Zoe through the corridors in the 'BIG GIRL' wheelchair.
This time she was a little scared of the x-ray machine so I put on the led jacket and stood by her and held her hand. The first thing we noticed was the size of her heart... it was huge! nothing was said about the size of her heart though so we are guessing that was normal. The lungs however were not so normal.
The whole bottom half of her left lung was white with white blotches over the top half and the right one. Of course we had no idea that it should have been any different (since X-rays are black and white) but we were soon to find out that she had a bad Lung infection (this came as a shock because she didn't look sick at all and her cough wasn't really that bad).
We waited for the physiotherapist to come down to see her and she is the type of person who should be banned from talking with Parents. She blurted out "The bottom half of her Lung is not functioning"! she then looked at my face and said "but it's ok, don't worry we just need to fix it"! umm ok says me.
Her stomach aches are from the Advil. This happens frequently with Anti-inflammatory drugs. It can cause Ulcers of the stomach etc.
Anyway home we trot with a prescription in hand for antibiotics (Lungs) another medicine for her stomach and another prescription for Physio (Clapping). We started the antibiotics that night and the little brat spat it out three times!! I was beside myself. For any parent who has had the unfortunate experience of staying a few days in hospital with their sick child AND everyone else's you would surely agree it is a nightmare! not only can you not sleep because the lights are so bloody bright but you also have the poor kids who aren't lucky enough to have their Mum/Dad spend the night with them crying all night. So here I was thinking 'damn it kid, stop spitting your medicine cause if we have to spend the next few days in hospital I will be one cranky Mummy'!
Well we finally tricked her with a yoghurt and I breathed a sigh of relief. The next day was the clapping... What can I say about that? The most barbaric form of physio I have ever been witness to... And it didn't make a lick of difference she didn't spit anything up. She kept swallowing what ever she did cough up, but the physio was meant to do a gentile form of clapping to squeeze the gunk out of the bottom of her lungs but she was up on top of the table pushing with all her might. Zoe was bright red and I thought her eyeballs were going to fly out of her head! NOT EXAGGERATING!
I have to call the hospital tomorrow and find out what the next step is. We may have to do another x-ray to see if she is getting better or change antibiotics. I just hope we don't have to subject her to more clapping. She has to go through so much already I can't stand to see her suffer through that as well.
The doctor told us this is just the beginning because the flu season is upon us and Winter is coming fast. First 3 weeks of school and she is out with a lung infection.. I have a feeling this is going to be a LONG winter. Once we get her infection under control she has to have a flu shot which can also be dangerous for her but at least she is being seen regularly by her Dr. We just have to be more vigilant! No more letting people kiss her. So back off people! Keep your Jimmy Germs away from my baby girl ;)
vendredi 9 septembre 2011
Hard to say goodbye
Zoe started pre-school this week. Her first day was amazing, she was so brave and didn't cry, so I thought "ok, this is going to be a piece of cake". Although first weeks are always hard when ever you take your child to school whether it be number 1 child or number 10 child I can honestly say that today 3rd day of school was the worst I have EVER experienced with all 3 of my kids!
Maybe it is just because I am at a very low point at the moment because nothing dramatic actually happened! I walked Zoe into class, she had hold of my hand and she walked me over to a table where the puzzles were laid out... I helped her sit in the chair and then she said "sit down Mummy"! I squatted down next to her and said "ok, Mummy has to go now". Her lip went down and she looked up at me and said "No mummy, sit down". She tried not to cry but it was too much for her and she started sobbing!
Again, as I said nothing out of the ordinary from any other kids first week! But imagine a little girl who is 2 and a half years of age, who lays still for a Doctor who pushes on her stomach, checks her heart, throat, ears and then moves all of her limbs in all different positions (knowing they hurt), who sticks needles and IV tubes in her continuously. Imagine that same little girl who sings to herself while she is getting a full body X-ray, or her head stuck in a machine to check her eyes and through all of that... not one tear will fall from her eye! Yet to be separated from me for such a 'NORMAL' event in her life can evoke such emotion that she does not show during her medical ordeals was heart wrenching!
I can not protect her from her physical pain but I should be able to protect her from her emotional pain and today I couldn't even do that because I know that she needs to be with children her own age and it will make her stronger later in life! I just feel like I am failing her in every way! I wish her life could be easier, pain free, free of needles, free of medication, free of illness, free of being poked and prodded !
I wonder if other (JIA) Mother and Father's feel like I do today? Maybe next week will be better!
Maybe it is just because I am at a very low point at the moment because nothing dramatic actually happened! I walked Zoe into class, she had hold of my hand and she walked me over to a table where the puzzles were laid out... I helped her sit in the chair and then she said "sit down Mummy"! I squatted down next to her and said "ok, Mummy has to go now". Her lip went down and she looked up at me and said "No mummy, sit down". She tried not to cry but it was too much for her and she started sobbing!
Again, as I said nothing out of the ordinary from any other kids first week! But imagine a little girl who is 2 and a half years of age, who lays still for a Doctor who pushes on her stomach, checks her heart, throat, ears and then moves all of her limbs in all different positions (knowing they hurt), who sticks needles and IV tubes in her continuously. Imagine that same little girl who sings to herself while she is getting a full body X-ray, or her head stuck in a machine to check her eyes and through all of that... not one tear will fall from her eye! Yet to be separated from me for such a 'NORMAL' event in her life can evoke such emotion that she does not show during her medical ordeals was heart wrenching!
I can not protect her from her physical pain but I should be able to protect her from her emotional pain and today I couldn't even do that because I know that she needs to be with children her own age and it will make her stronger later in life! I just feel like I am failing her in every way! I wish her life could be easier, pain free, free of needles, free of medication, free of illness, free of being poked and prodded !
I wonder if other (JIA) Mother and Father's feel like I do today? Maybe next week will be better!
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