Neither Sophie or I are morning people , and we usually have a hard time getting up , we fight about getting ready for school and its a struggle to get her up and ready to get out the door. Today however, she was happy to get up when her alarm went off, got all her stuff done and ready to head to school with no fuss, she even wanted to be to school early to play outside for a bit before school.
Other then being a bit fatigued lately, she has really had very little pain , a few minor complaints here and there but she really seems to be doing ok lately with her Arthritis. Next week we go back to see our rheumy , and Iam hoping for good news, in the last 3 yrs of us dealing with jia , almost all of our trips to the childrens hospital have resulted in med changes, injections and just not great news. But Iam hopeful this time even after last months scare of her liver function blood work being elevated and being taken off her med for a few weeks is not getting in the way of hopefulness of good news. We go for blood work this week and will see how her liver is doing and hopefully it will stay where it should be, we are very limited in the drugs they can give her due to her immune defiency. So this one even with all the scary side effects and chance it can affect her liver again seems to be her miracle drug and we will keep her on it as long as it helps her and gives her back her childhood.
I hope I am not being too optomistic that I regret it later on , I am not always a positive person but seeing Sophie with little pain and being able to do the things she loves without suffering for it later has made me the happiest person in the world. She has been through so much , we have struggled with needles, and with getting her to take meds and now for things to be looking up I am so greatful. I am so blessed with a wonderful church family who has kept Sophie in their prayers and a wonderful on line supportive group who have become part of my daily life and I would be lost without them . My immediae family have been so supportive as well, Next week is our 16th trip to a hospital that is 5 hours drive , and my mom has come with me every trip , and my sis has helped me out with looking after my fur babies, I am so thankful for them.
I know I don't always show how much I am greatful for my life and all those in it, but today I am saying thanks , and I do feel so blessed for all I have and everything that is going right in my life right now. It maybe cloudy and grey outside today but knowing my daughter is doing well and my family are safe and love me , my heart is full of sunshine and gratitude for all I have .
Monday, February 6, 2012
Friday, December 30, 2011
2011
Looking back on 2011 and how it started out and how it is finishing I have to say that the end is better then the beginning but it still has been a very rough road and Iam hoping that 2012 is so much better for my family than 2011 was.
It started out going to the iwk with a child in alot of pain that was treated with steroids ( prednisone) and now deciding to add to the mix weekly injections of methotrexate, the first few times we were instructed at our local hospital on how to give the needle. Then came the time to go it at home, the first few times though very scary went well, it was just Sophie and I here and her being a brave girl and mom( me) being not so brave but not showing it and sucking it up and doing it .... all for the sake of my girl and hoping that this med would help her arthritis.
We spent 7 months doing the injections at home, after her realizing what was in store she decided not to be as brave as she first had been , it took bribes, and rewards and holding her down ( with help of my parents) to get it done , in the end I had a 6 yr old child who was showing signs of depression and anxiety and still not getting as much relief as we had hoped. I had to put her in therapy and we decided in October to try another drug. This was a pill( Arava) she had not learned to swallow a pill and she was willing to do so if it meant no more injections( at least for now) . She did great learning to take the pill( thank goodness it was small) . But we are still having some flare ups, pain and swelling , she is fatigued certainly not as bad as she had been at the end of last yr but I am still hoping that come Feb we are able to try something else or do something else that may give her better relief. It is so hard being a mom to a child with a chronic illness. Watching them suffer in pain and not having much to offer in way of help sucks . My parents bought her a heating blanket which has come in handy.I know she could be much worse, but this year has been enough of a struggle. Blood work , trips to the iwk(our closest childrens hospital ) , she even had to be admitted for 3 days back in July for a flare up that resulted in iv steroid treatment. We have been dealing with Arthritis for close to 3 years now, we have our ups and downs , good days and not so good days. Iam so greatful to all the moms I talk to on a facebook group, they have given me and Sophie so much support and prayers through it all. I do not know where I would be without them.
My wish for all kids suffering with any kind of illness is that 2012 be better for all these kids, for them to be able to have as much of a normal childhood as possible, it is hard when our kids take daily meds, needles, endless appointments, get sick easier, miss school , can't keep up or participate in activities like their peers do. my new yrs resolution is to do all I can to give awareness to an invisible illness that too many of our kids suffer with . To make others aware just because a child may not look " sick" does not mean they aren't. Inside they are suffering and wanting to be "normal" and pain free and not to have to take meds, and miss school and go see a doc all the time and to have needles and wonder about their future and if their hopes and dreams are realistic for them, will I be well enough to go to college, will I be well enough to get married and have my own children , will I be well enough to hold a job , will I be well enough ..... these are things our kids have to deal with and I hate it , I feel very helpless when it comes to Arthritis and helping my child learn her limits and find new goals and hopes and dreams . We have all dealt with more then our fair share this year, life is not always easy I know , but if we can just have a few less days of pain and a few less days in hospital and a few more days watching our kids be kids and laughing and doing what kids should be doing then this year that is almost upon us will be better then the one we just had ... I wish you all the very best ( and let god's love for all of us help you through when we do have those bad days) . I am so grateful to have a beautiful , brave , strong daughter who has taught me more in her 6 yrs on this earth then I have learned my whole life. I love you Sophie !!!! you are my superstar!!
It started out going to the iwk with a child in alot of pain that was treated with steroids ( prednisone) and now deciding to add to the mix weekly injections of methotrexate, the first few times we were instructed at our local hospital on how to give the needle. Then came the time to go it at home, the first few times though very scary went well, it was just Sophie and I here and her being a brave girl and mom( me) being not so brave but not showing it and sucking it up and doing it .... all for the sake of my girl and hoping that this med would help her arthritis.
We spent 7 months doing the injections at home, after her realizing what was in store she decided not to be as brave as she first had been , it took bribes, and rewards and holding her down ( with help of my parents) to get it done , in the end I had a 6 yr old child who was showing signs of depression and anxiety and still not getting as much relief as we had hoped. I had to put her in therapy and we decided in October to try another drug. This was a pill( Arava) she had not learned to swallow a pill and she was willing to do so if it meant no more injections( at least for now) . She did great learning to take the pill( thank goodness it was small) . But we are still having some flare ups, pain and swelling , she is fatigued certainly not as bad as she had been at the end of last yr but I am still hoping that come Feb we are able to try something else or do something else that may give her better relief. It is so hard being a mom to a child with a chronic illness. Watching them suffer in pain and not having much to offer in way of help sucks . My parents bought her a heating blanket which has come in handy.I know she could be much worse, but this year has been enough of a struggle. Blood work , trips to the iwk(our closest childrens hospital ) , she even had to be admitted for 3 days back in July for a flare up that resulted in iv steroid treatment. We have been dealing with Arthritis for close to 3 years now, we have our ups and downs , good days and not so good days. Iam so greatful to all the moms I talk to on a facebook group, they have given me and Sophie so much support and prayers through it all. I do not know where I would be without them.
My wish for all kids suffering with any kind of illness is that 2012 be better for all these kids, for them to be able to have as much of a normal childhood as possible, it is hard when our kids take daily meds, needles, endless appointments, get sick easier, miss school , can't keep up or participate in activities like their peers do. my new yrs resolution is to do all I can to give awareness to an invisible illness that too many of our kids suffer with . To make others aware just because a child may not look " sick" does not mean they aren't. Inside they are suffering and wanting to be "normal" and pain free and not to have to take meds, and miss school and go see a doc all the time and to have needles and wonder about their future and if their hopes and dreams are realistic for them, will I be well enough to go to college, will I be well enough to get married and have my own children , will I be well enough to hold a job , will I be well enough ..... these are things our kids have to deal with and I hate it , I feel very helpless when it comes to Arthritis and helping my child learn her limits and find new goals and hopes and dreams . We have all dealt with more then our fair share this year, life is not always easy I know , but if we can just have a few less days of pain and a few less days in hospital and a few more days watching our kids be kids and laughing and doing what kids should be doing then this year that is almost upon us will be better then the one we just had ... I wish you all the very best ( and let god's love for all of us help you through when we do have those bad days) . I am so grateful to have a beautiful , brave , strong daughter who has taught me more in her 6 yrs on this earth then I have learned my whole life. I love you Sophie !!!! you are my superstar!!
Wednesday, August 17, 2011
Planning when you have a chronically ill child
Awhile back my sister asked us if next yr we wanted to go on a trip with them, I immediately said yes, not thinking ahead. then it came up a few questions about the trip and it made me think that I don't have the answers , i dunno how my child's illness will be when the time actually comes to go on a trip a yr in . What happens if we cannot go ? what happens if we plan it all out and in the end we cannot due to health issues go and everyone is relying on us to pay our part of the trip and it is now onthem to make up teh money for us not going and contributing to this trip? How do other families of chronically ill children/people plan a trip with friends and family and feel ok about it if the time came and you coudl not go ? I tried to explain this and in the end was not understood by my family. I am confused and not sure anymore if in our life we can honestly say we can do something , to be open and honest about it I woudl feel horrible if we said we coudl go and then couldn't and left our family having to make up for our part of the trip. How do I explain how I feel to the ones who invited us and am I wrong in deciding that we cannot plan things like this in the event we cannot go ?
Sunday, August 14, 2011
my life as a single mom: Being a single mom
my life as a single mom: Being a single mom: "4 yrs ago I decided that my marriage of 2 yrs was not working and it was best to walk away and move on with my life. Just after that , I fou..."
my life as a single mom: Letting go
my life as a single mom: Letting go: "My daughter joined Sparks awhile back and the other night they had palnned a sleepover. She has slept over at my parents house before and at..."
my life as a single mom: Dealing with a child who refuses to go with the pa...
my life as a single mom: Dealing with a child who refuses to go with the pa...: "From the time my daughter was little she never developed a strong bond with her father. I went back to work , working evenings after a year ..."
my life as a single mom: First day of giving my daughter her needle.....
my life as a single mom: First day of giving my daughter her needle.....: "Today we were going to go to the hospital for the last time to give Sophie her Methotrexate Injection, with the help of the nurse. But becau..."
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