The Jingle Bell Run was a huge success – Team Sadie’s Stars raised $11,012.00 and we had a team of over 90 people!!
The last few months have been so very touching. Our family has seen love and generosity at its very best. I have found a personal passion in connecting with people who are dealing with a new diagnosis. I remember how trying that time really is and I also remember the relief that I felt the first time I was able to openly share my feelings and thoughts with someone who fully understood what I was talking about. In creating Sadie’s Stars last year, I never imagined the success of this year nor could I have imagined the number of people that have either been touched by Sadie’s story or who have opened up and shared their story because of this event. Sharing our stories is where making a difference happens and I have experienced that first hand this year.
The event itself was a lot of fun, we had two teams meeting at different times to participate in different waves of the event along with quite a few who showed up at the start line. Sadie cut the ribbon to start the first wave which was “running with the elves” and her and many kids, family, friends, co-students all took off running. Yes, I said running. Sadie actually ran about 3 blocks at which point she pulled over to the side and waited for her much winded mother to catch up! We took a good break and then made our way to the finish line to cheer for the rest of the pack. Sadie was able to meet up with on of her friends and they crossed the finish line together. She was thrilled! Then we meet up with the second group and Sadie completed about two blocks and we slowly made our way to the finish line to create a cheering station for the rest of our team. Sadie was disappointed she could not do the entire 5K, but understood that she did her best and that next year we will have new goals. Before and after the event Sadie was brave enough to even speak in the microphone on stage. For me, I was filled with pride! Pictures from Jingle Bell to be posted soon!
As far as how Sadie is doing, she is really well. I realize that what my goals are and what reality is are two different things… the fact of the matter is there will be good days and bad days and we are past the point where we have good “months” as we had in the past. Sadie can overdo it and be out for a while, that is just a fact now. I am learning to eat this reality, but it surely isn’t something you would ever want for your child, so I am taking it with some bitter faces.
We wish for all of you a wonderful Christmas where we celebrate the life we have been given through the life and death of Jesus Christ. If it was not for the Mercy of our Lord, we would not have the blessings we have today.
Showing posts with label 2006. Show all posts
Showing posts with label 2006. Show all posts
Tuesday, October 27, 2009
November 27, 2006
I hope everyone had a great Thanksgiving and really took some time to reflect on what we all have in our lives that we should be grateful for!
Updates: Sadie had joint injections last Monday the 20th; this was the most injections she has had at one time. The procedure went well and she handled everything very well. They did give her something to help with her anxiety about the “mask” (being put under) and that seemed to make things much smoother, but she came out of it pretty loopy. She rested Monday and was pretty sore and swollen all day. Tuesday she was still not able to put any weight on her ankle at all, but she did go to school. She spent the day in a wheelchair, but pretty much was independent from needing any help. By late Tuesday night she was almost putting all her weight back on her leg. Wednesday we left town to go to Medford to be with Bill’s family for Thanksgiving. She was great the entire trip… she even was doing a little running and jumping. We did go on a few walks and we took the wheelchair just in case. She opted to use it a few times for a short break, but then hopped back up and was on her way. I am extremely hopeful that this means that the injections actually are helping this time. She also changed one of her medications, but at this point it is too early to know what if anything that is doing. Sadie goes in for her next Remicade this Thursday and then we start the 10 day countdown to the Jingle Bell Run!
Dr. Wallace and I talked a lot the Friday before injections and sometime between now and next year she would like her to see an orthopedic surgeon to talk about ways to help with the damage that has been done in her ankle. The hardest thing for us right now is gauging what pain is from active dieses and what is from damage done. The hope is the orthopedic surgeon can give us some further information on ways to correct (if possible) the damage (which there is quite a bit of). I look forward to hearing what they have to say and then making decisions based on having all the information.
Thank you for your prayers for Sadie…. I am so hopeful right now that we are going to turn a corner and she is going to be able to put this year behind her to start the next year on the right foot (pun intended!).
Updates: Sadie had joint injections last Monday the 20th; this was the most injections she has had at one time. The procedure went well and she handled everything very well. They did give her something to help with her anxiety about the “mask” (being put under) and that seemed to make things much smoother, but she came out of it pretty loopy. She rested Monday and was pretty sore and swollen all day. Tuesday she was still not able to put any weight on her ankle at all, but she did go to school. She spent the day in a wheelchair, but pretty much was independent from needing any help. By late Tuesday night she was almost putting all her weight back on her leg. Wednesday we left town to go to Medford to be with Bill’s family for Thanksgiving. She was great the entire trip… she even was doing a little running and jumping. We did go on a few walks and we took the wheelchair just in case. She opted to use it a few times for a short break, but then hopped back up and was on her way. I am extremely hopeful that this means that the injections actually are helping this time. She also changed one of her medications, but at this point it is too early to know what if anything that is doing. Sadie goes in for her next Remicade this Thursday and then we start the 10 day countdown to the Jingle Bell Run!
Dr. Wallace and I talked a lot the Friday before injections and sometime between now and next year she would like her to see an orthopedic surgeon to talk about ways to help with the damage that has been done in her ankle. The hardest thing for us right now is gauging what pain is from active dieses and what is from damage done. The hope is the orthopedic surgeon can give us some further information on ways to correct (if possible) the damage (which there is quite a bit of). I look forward to hearing what they have to say and then making decisions based on having all the information.
Thank you for your prayers for Sadie…. I am so hopeful right now that we are going to turn a corner and she is going to be able to put this year behind her to start the next year on the right foot (pun intended!).
November 10, 2006
Quick update: Sadie's Remicade infusion went very well, nothing to report of. The one medication that she is taking Imuran (which replaces the Methotrexate) has caused Sadie to have an allergic reaction, so we removed her from that and re-introduced the medication after the hives cleared up to confirm that was what made her break out. Yesterday we removed her from that medication again as the hives are back. We will know about another plan of action soon on this.
Sadie was to have joint injections done Monday, but that was cancelled. We arrived at 6:30, checked in, got to a pre opp room and then waited. 7:45 the doctor came in to discuss some things and then advised that they were running late due to the fact the operating room had some standing water issue and that the roof was leaking. About 20 minutes later we were advised that they were canceling all out patient surgery, so we went home. We still have not been able to get this re-scheduled. Not only is Children's now backed up but there was question about how much damage had been done to some equipment. Hopefully we will know more soon.
Sadie and I were able to visit some of the University of Washington sorority houses yesterday to encourage them to join their sorority team and participate in the Jingle Bell Run. We had a lot of fun going to see the houses and share a little bit about how arthritis isn't something just "old people" get. Sadie was very, very tired and sore from what I considered a very limited amount of walking. I am concerned about her participation at the Walk, but am also hopeful that we will see some improvements for her soon.
Please keep her in your prayers.
Sadie was to have joint injections done Monday, but that was cancelled. We arrived at 6:30, checked in, got to a pre opp room and then waited. 7:45 the doctor came in to discuss some things and then advised that they were running late due to the fact the operating room had some standing water issue and that the roof was leaking. About 20 minutes later we were advised that they were canceling all out patient surgery, so we went home. We still have not been able to get this re-scheduled. Not only is Children's now backed up but there was question about how much damage had been done to some equipment. Hopefully we will know more soon.
Sadie and I were able to visit some of the University of Washington sorority houses yesterday to encourage them to join their sorority team and participate in the Jingle Bell Run. We had a lot of fun going to see the houses and share a little bit about how arthritis isn't something just "old people" get. Sadie was very, very tired and sore from what I considered a very limited amount of walking. I am concerned about her participation at the Walk, but am also hopeful that we will see some improvements for her soon.
Please keep her in your prayers.
November 1, 2006
It has been a busy week, or weeks, or month for that matter.
First let me start of with the good new… well, there are three.
1. Sadie had been off her medications for a little over three weeks and during that period of time Sadie did not feel any worse than she did while on the medications. To me this is big… it means that she wasn’t suffering without medications and many other joints could have flared up, but we did not witness that.
2. Bill got a new job! Bill was very happy with his old employer and had a hard time leaving, but an opportunity came up that was too large to walk away from. What is great about this… better benefits. Medical cost in our family is an issue I don’t’ talk about on this site much, but those close to us know this is a HUGE issue… it RUNS our lives. God has answered a prayer with this job and we are feeling BLESSED. We have a while before those will kick in, but the light is shining and I can see it!
3. Sadie was approved for the starlight starbright foundation. This foundation is much like Make-a-Wish, but they don’t do big trips… they serve as support to families with children that are chronically/seriously ill. This will give us an opportunity to participate in many community events we have not had the money to afford in the past.
Now the updates. Sadie had her eyes checked again and once again they came out clear, four months before we go back. Then Sadie had her annual physical and we found out that in the year Sadie has grown two inches and lost ½ pound! Wow! Wouldn’t most of us like that problem. She is still 80% for her height and 60% weight, which she has been out for a long time! No flu shot yet, but looks like next week! Friday the 27th Sadie had an MRI of her ankles. She did a wonderful job during the MRI, she stayed still longer then I could have and just did a super job. They did the MRI without dye and then added dye. The dye helps them determine where the arthritis is specifically located. Then Saturday Sadie celebrated her 9th birthday! Monday the 30th we went back in to see Dr. Wallace with the hopes that we would be able to keep her off most of her medications. We expected to hear of some active arthritis in her ankle and some damage done (that is just obvious without the MRI). Unfortunately, that isn’t’ really all we heard.
Sadie’s ankle has a lot of joint damage, bone deterioration and some bone fusing (meaning the bones are attaching themselves together). She showed active arthritis in both her ankle joint (joint that allows you to move your foot up & down) and her sub-talar joint (side to side) this we all ready knew, but the MRI also showed damage and active dieses in her calcaneus, cuboid, cuneiforms and metatarsal joints and some signs of stress on her tibia and fibula (for a great lesson – google ankle bones or foot bones). Also there are some signs of cysts with-in the bone. The cysts basically are caused by active dieses actually penetrating the bone.. When we get the arthritis under control the cysts over time should correct themselves, but in the mean time can weaken the bone. Whew – did you catch all that?
In addition to all this news (which when given w/in 5 mins is a bit overwhelming) Dr. Wallace did her normal exam of Sadie. Dr. Wallace is more concerned with her neck at the moment. Sadie has been consistently complaining of neck pain (probably 4 or 5 days a week). The doctor also advised that although she isn’t feeling worse yet, if I was to give her another few weeks without medications she would be in horrible shape. I have to tend to believe her only because the MRI proves it. The problem with what she is dealing with is a few things: first, Sadie has a very high pain tolerance. Second, if we don’t get the active arthritis, quite, further joint damage will be done. It isn’t even a question of IF, it is when. So, that said… Sadie has had her anti-inflammatory medication (the only thing she stayed on during the last few weeks) increased. She has changed from methotrexate to another type of medication and she will start Remicade again tomorrow. We will try the Remicade for three months and then return to see if there has been any progress in her condition at all. The other thing that will happen is Monday (11/6) Sadie will go in for further joint injections. They will be injecting her ankle, sub-talar and Cuneiforms in hopes that this will help the inflammation.
I think this is all the medical news I have. In regards to the Jingle Bell Run – we are 54% to our goal. The team needs to raise an average of $62.65 a day to get to our goal by December 10th. I know we can do it!! If you are interested in joining, please contact me, we would LOVE to have you a part of our team.
First let me start of with the good new… well, there are three.
1. Sadie had been off her medications for a little over three weeks and during that period of time Sadie did not feel any worse than she did while on the medications. To me this is big… it means that she wasn’t suffering without medications and many other joints could have flared up, but we did not witness that.
2. Bill got a new job! Bill was very happy with his old employer and had a hard time leaving, but an opportunity came up that was too large to walk away from. What is great about this… better benefits. Medical cost in our family is an issue I don’t’ talk about on this site much, but those close to us know this is a HUGE issue… it RUNS our lives. God has answered a prayer with this job and we are feeling BLESSED. We have a while before those will kick in, but the light is shining and I can see it!
3. Sadie was approved for the starlight starbright foundation. This foundation is much like Make-a-Wish, but they don’t do big trips… they serve as support to families with children that are chronically/seriously ill. This will give us an opportunity to participate in many community events we have not had the money to afford in the past.
Now the updates. Sadie had her eyes checked again and once again they came out clear, four months before we go back. Then Sadie had her annual physical and we found out that in the year Sadie has grown two inches and lost ½ pound! Wow! Wouldn’t most of us like that problem. She is still 80% for her height and 60% weight, which she has been out for a long time! No flu shot yet, but looks like next week! Friday the 27th Sadie had an MRI of her ankles. She did a wonderful job during the MRI, she stayed still longer then I could have and just did a super job. They did the MRI without dye and then added dye. The dye helps them determine where the arthritis is specifically located. Then Saturday Sadie celebrated her 9th birthday! Monday the 30th we went back in to see Dr. Wallace with the hopes that we would be able to keep her off most of her medications. We expected to hear of some active arthritis in her ankle and some damage done (that is just obvious without the MRI). Unfortunately, that isn’t’ really all we heard.
Sadie’s ankle has a lot of joint damage, bone deterioration and some bone fusing (meaning the bones are attaching themselves together). She showed active arthritis in both her ankle joint (joint that allows you to move your foot up & down) and her sub-talar joint (side to side) this we all ready knew, but the MRI also showed damage and active dieses in her calcaneus, cuboid, cuneiforms and metatarsal joints and some signs of stress on her tibia and fibula (for a great lesson – google ankle bones or foot bones). Also there are some signs of cysts with-in the bone. The cysts basically are caused by active dieses actually penetrating the bone.. When we get the arthritis under control the cysts over time should correct themselves, but in the mean time can weaken the bone. Whew – did you catch all that?
In addition to all this news (which when given w/in 5 mins is a bit overwhelming) Dr. Wallace did her normal exam of Sadie. Dr. Wallace is more concerned with her neck at the moment. Sadie has been consistently complaining of neck pain (probably 4 or 5 days a week). The doctor also advised that although she isn’t feeling worse yet, if I was to give her another few weeks without medications she would be in horrible shape. I have to tend to believe her only because the MRI proves it. The problem with what she is dealing with is a few things: first, Sadie has a very high pain tolerance. Second, if we don’t get the active arthritis, quite, further joint damage will be done. It isn’t even a question of IF, it is when. So, that said… Sadie has had her anti-inflammatory medication (the only thing she stayed on during the last few weeks) increased. She has changed from methotrexate to another type of medication and she will start Remicade again tomorrow. We will try the Remicade for three months and then return to see if there has been any progress in her condition at all. The other thing that will happen is Monday (11/6) Sadie will go in for further joint injections. They will be injecting her ankle, sub-talar and Cuneiforms in hopes that this will help the inflammation.
I think this is all the medical news I have. In regards to the Jingle Bell Run – we are 54% to our goal. The team needs to raise an average of $62.65 a day to get to our goal by December 10th. I know we can do it!! If you are interested in joining, please contact me, we would LOVE to have you a part of our team.
October 13, 2006
I wanted to give a quick update... So far off the medications Sadie is doing very well. She is no better, but she is no worse, which to me is huge. Next week she has therapy and an eye exam and the following week she has her 9 year check up (wow) and the MRI (27th). She will be back to see the rhematologist on the 30th and we will go over the last few weeks and the MRI results.
I may not update until after those appointments, unless things have changed.
Sadie's Stars is doing amazing... if you are interested in donating or joining the team please follow this link:
http://www.seattlejinglebellrun.org/site/TR?team_id=2830&pg=team&fr_id=1050
I may not update until after those appointments, unless things have changed.
Sadie's Stars is doing amazing... if you are interested in donating or joining the team please follow this link:
http://www.seattlejinglebellrun.org/site/TR?team_id=2830&pg=team&fr_id=1050
October 6, 2006
Lots of new stuff in this last week and more to come I am sure. Yesterday we (our family and doctors) decided that the best thing for Sadie right now is to take her off most of her medications. No more prednisone (steriod) and no more Remicade. Her doctor wanted her to stay on the Methotrexate as she feels it would be too much on her body to just stop it all at one time, but then when I got home I had a message asking that she stop the methotrexate for two weeks (for other reasons). So at this point Sadie will be on anti-inflammatories only. She has a blood draw yesterday as there are other signs that she might have some type of infection so they want to see her labs, they just came back (as I type) and all is normal - this is a huge relief. Next week she will have an MRI to see how much arthritis is active, where it is and how much damage has been done. This will help Dr. Wallace understand the best way to move forward.
We don't know what this will look like for Sadie to be off all the medications, I can only ask that we have prayers for MERCRY and for HEALING.
Team Sadie's Stars is just mind blowing so far this year. We have already raised over $1,600.00 and it is on the first week in October. Sadie's pediatricians office has joined our team this year and are putting together and amazing benefit event in Everett. Jimmy Z's in Everett will be hosting the event and so far they have arranged a very, very special band to perform. I am amazed by the giving that people are showing in support of Sadie and in support of the Arthritis Foundation!
We don't know what this will look like for Sadie to be off all the medications, I can only ask that we have prayers for MERCRY and for HEALING.
Team Sadie's Stars is just mind blowing so far this year. We have already raised over $1,600.00 and it is on the first week in October. Sadie's pediatricians office has joined our team this year and are putting together and amazing benefit event in Everett. Jimmy Z's in Everett will be hosting the event and so far they have arranged a very, very special band to perform. I am amazed by the giving that people are showing in support of Sadie and in support of the Arthritis Foundation!
September 28, 2006
When I put together this site a little over a year ago; I had no idea what was ahead. In the past years Sadie would have a minor flare up here and there, but for the most part if was a bump in the road... we got over the bump and moved on. Lived life as if Arthritis wasn't really a factor, with the exception of the medication and physical therapy. Today however, we are still climbing a mountain, a hike we expected to only be a short trip. Some days it feels like the weather on this climb turns unexpectadly and we get caught in a heavy rain storm without any warning. Other times we feel an overwhelming desire to push with all we have to get to the top, but then there are days where the climb has wore us out. Sadie by far gets the worst of this, but you may not have even noticed.. she is the strongest person I have ever known. She often will look at the mountain and say "aw, it isn't that much further to climb!" and rarely, but sometimes will say "can we just camp here for the night?". Some of what I am learning on this climb is that every peak and valley holds a different experience and that each of our family members have a way of experiencing this climb in their own unique way. Amazing to think... we all started the climb together, but our perception and experience even when hand and hand are each their own.
This story below "WELCOME TO HOLLAD" has touched me in an amazing way! I hope you will enjoy it.
WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
This story below "WELCOME TO HOLLAD" has touched me in an amazing way! I hope you will enjoy it.
WELCOME TO HOLLAND
byEmily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
September 26, 2006
Sadie had a very hard end of the week emotionally. This might be due to the medications, due to the fact she is tired, due to the fact school is catching up with her, due to the fact she is having to manage pain all day. We can play that game on and one. She has been having very vivid and intense nightmares and at first we thought this was just because she is a kid and kids go through these stages, but now we think that the steroid medication may have a hand in this too. This is still and issue nightly and we are just doing what we can to help her feel comfortable at night. Sleeping is such an important thing for kids and especially those with a chronic illness. Sadie had her first pool therapy last week and enjoyed doing therapy in the pool MUCH better then on land.
Team Sadie’s Stars is still growing strong; thank you to all who have joined donated or spread the word… I am so excited to be a part of this event again this year and to be able to put some positive energy into a negative experience.
http://www.seattlejinglebellrun.org/site/TR?team_id=2830&pg=team&fr_id=1050
Team Sadie’s Stars is still growing strong; thank you to all who have joined donated or spread the word… I am so excited to be a part of this event again this year and to be able to put some positive energy into a negative experience.
http://www.seattlejinglebellrun.org/site/TR?team_id=2830&pg=team&fr_id=1050
September 19, 2006
Sadie is doing much better, by Saturday was back to her old self again. It is really hard to tell how she is feeling in regards to the arthritis... I have a tendancy to be resistant to get excited, but she hasn't complained of pain and it seems while doing exercises that her range of motion in her neck is a little better. It is also very hard to know if this is the prednisone (steriod) or the Remicade. Either way, she can use some relief, so she will take ever bit she can. The Jingle Bell Team Sadie's Stars is growing and some have all ready started the hard work of raising money for the cause. I am so excited for this years team - we are going to Shine for Sadie. I hope you will consider joining our team or helping us reach our fundraising goals.
For more information please see
http://www.seattlejinglebellrun.org/site/TR?team_id=2830&pg=team&fr_id=1050
For more information please see
http://www.seattlejinglebellrun.org/site/TR?team_id=2830&pg=team&fr_id=1050
September 15, 2006
Sadie's Remicade visit yesterday went okay. She had the large dose of predispose first and then started the new larger dose of Remicade. Sadie was a bit emotional yesterday and very weepy. This is not like her at all so it was hard to understand what was going on. She spent quite a bit of time in my lap curled up. This was the first time we have done this medication in the morning rather then the afternoon. The biggest difference is we are use to coming home and eating dinner then heading to bed. On Remicade days she is always a bit more tired, but doing the Remicade first thing in the morning revealed how long this "tired" feeling lasts. Sadie was pretty much dragging all day and was very frustrated that she was feeling so out. Her legs were a bit weak and she had an awful stomach ache. She ended up going to bed with that stomach ache and therefore I am not waking her for school this morning. I hope that by the time she wakes up she will be feeling better.
On Tuesday, September 12th we (Sadie, Bill and I) attended the Jingle Bell Captain Kick-off event held at the Seattle Space Needle. I had the honor of being able to share our story. I am trying to find a way to post the speech I gave on this site, but having a hard time. I hope that I will be able to do this soon.
On Tuesday, September 12th we (Sadie, Bill and I) attended the Jingle Bell Captain Kick-off event held at the Seattle Space Needle. I had the honor of being able to share our story. I am trying to find a way to post the speech I gave on this site, but having a hard time. I hope that I will be able to do this soon.
September 7, 2006
Team Sadie’s Stars is growing enormously! I can’t even believe the fact that we have a team of 13 people and the invite to join was sent out 4 days ago!!! Thank you for signing up – emails will go out shortly with details on what we can provide to help fundraising efforts. If you haven’t signed up, please consider joining us for this event – it will be a great time for obviously a great cause.
P.S. The registration link is having some problems; SO if you would like to sign up, please email me for specific instruction as the link previously provided is only giving you options for the kids walk. Thank you!
Visit Team SADIE'S STARS:
http://www.seattlejinglebellrun.org/site/TR?team_id=2830&pg=team&fr_id=1050
Or my personal page:
http://www.seattlejinglebellrun.org/site/TR?pg=personal&fr_id=1050&px=1018941
P.S. The registration link is having some problems; SO if you would like to sign up, please email me for specific instruction as the link previously provided is only giving you options for the kids walk. Thank you!
Visit Team SADIE'S STARS:
http://www.seattlejinglebellrun.org/site/TR?team_id=2830&pg=team&fr_id=1050
Or my personal page:
http://www.seattlejinglebellrun.org/site/TR?pg=personal&fr_id=1050&px=1018941
September 7, 2006
This last few weeks has presented all kinds of challenges for our family. We have been spending most of our time focused on making decisions regarding Sadie’s pending medication changes. Going over every detail, talking to everyone we can to get feedback and help. We have gone from thinking of leaving the dosage where it is and just trying the “pulse” of steroid, to going forward with all the proposed changes, to seeing more naturopathic doctors, to pulling her off all medications to give her a break and then back to going forward with the dosage changes.
We have received some feedback from some other parents with kids with Sadie’s condition in regards to the dosage and the success they have had. This is promising to us. Our option to pull her off all her medication is one that is also very frightening as we don’t know if her current medication is actually helping and if we pull her off what to expect with not only her pain level, but additional complications in respects to other joints being involved. We have not completely shut the door to seeing another kind of naturopathic doctor, however this week (or last few weeks) have been very draining emotionally and I personally am going to hold off on this for a few weeks.
An update with the reaction she was having and her finger nails. So far, from my last post there are no additional nails added; three fingers and one toe. This to us seems like maybe the end of it as those four all were within days of each-other. Bill and I were talking more about this reaction the other day (as this has been a major factor in our upcoming choice in regards to the medications). There is one key thing that happened last time that was different than the past infusions. This last infusion we gave Sadie her methotrexate after the infusion was over by IV. Usually we give her the methotrexate by injection at home hours later. We are now questioning if this could have been the culprit for putting her body in “shock”. Obviously we will not make the choice to give the methotrexate w/ the IV again.
As far as Sadie’s first few days of school… she has been having good days and is glad to be back. We are seeing a very “typical” reaction to school, she holds it all together all day and when she gets home a little thing can trigger a larger negative response. The first day of school she had one little over-reaction, but quickly turned it around. The second day, there were several and she spent a little time in tears, just tired and over done. This is a touchy subject for me as Sadie is in need of some good down time after school is over and the logistics of that are not fully working out. On other note… we did know to expect this and it changes as the year goes on. Once she feels she can trust the people around her (new classmates, teachers, ect) she will start to give more signals that she is in pain, or tired at school too. As the year goes on she lets down her guard more and more as this is a hard thing to keep up, acting like everything is fine, when it is not. Imagine as an adult what that feels like; then take yourself back to those exciting first few weeks of school. It is a lot of pressure for one little girl!
We have received some feedback from some other parents with kids with Sadie’s condition in regards to the dosage and the success they have had. This is promising to us. Our option to pull her off all her medication is one that is also very frightening as we don’t know if her current medication is actually helping and if we pull her off what to expect with not only her pain level, but additional complications in respects to other joints being involved. We have not completely shut the door to seeing another kind of naturopathic doctor, however this week (or last few weeks) have been very draining emotionally and I personally am going to hold off on this for a few weeks.
An update with the reaction she was having and her finger nails. So far, from my last post there are no additional nails added; three fingers and one toe. This to us seems like maybe the end of it as those four all were within days of each-other. Bill and I were talking more about this reaction the other day (as this has been a major factor in our upcoming choice in regards to the medications). There is one key thing that happened last time that was different than the past infusions. This last infusion we gave Sadie her methotrexate after the infusion was over by IV. Usually we give her the methotrexate by injection at home hours later. We are now questioning if this could have been the culprit for putting her body in “shock”. Obviously we will not make the choice to give the methotrexate w/ the IV again.
As far as Sadie’s first few days of school… she has been having good days and is glad to be back. We are seeing a very “typical” reaction to school, she holds it all together all day and when she gets home a little thing can trigger a larger negative response. The first day of school she had one little over-reaction, but quickly turned it around. The second day, there were several and she spent a little time in tears, just tired and over done. This is a touchy subject for me as Sadie is in need of some good down time after school is over and the logistics of that are not fully working out. On other note… we did know to expect this and it changes as the year goes on. Once she feels she can trust the people around her (new classmates, teachers, ect) she will start to give more signals that she is in pain, or tired at school too. As the year goes on she lets down her guard more and more as this is a hard thing to keep up, acting like everything is fine, when it is not. Imagine as an adult what that feels like; then take yourself back to those exciting first few weeks of school. It is a lot of pressure for one little girl!
September 3, 2006
On Friday, Sadie's pediatrician referred her to a dermatologist to have her fingernails looked at (from her last journal entry, a few of her nails are falling off). Just that morning another nail started to pull away from the base, so I felt it was a blessing we were being see that day.
Unfortunately the doctor feels that the problem is 100% due to the amount of medication she is on. He did take pieces of the nails that were left on the affected fingers and confirmed that there was no bacteria growing. He also found the start of this on one of her toe nails.
One (of many) of my concerns right now is that on the 14th they will be doubling her medications doses because this flare up is so out of control. I asked him if we should expect more nails to be affected and any other things to happen. He compared what was happening to her body to chemotherapy.. he stated - someone dealing with chemotherapy finds their hair falling out and their nails sometimes turning black, but once the medications are completed, everything returns to normal. Well, obviously he knows little about the fact that these medications are a long term deal. IF the Remicade starts working at double the dose it would be at least a year AFTER her arthritis is under control before we would even talk about weaning her off of them. So, I didn't walk away from the appointment feeling very good about the outcome.
He did say - well, she is having a lot pumped through her body. I think it is easy to just get caught up in treating her to get her well and not think about the amount of medication she is dealing with.
Sadie's ankle is giving her a hard time along with her neck... she has not had a day that her neck has not been bothering her. With school starting in just a few days I can only pray that she will finally start feeling some relief. My prayers are for a miracle... for this to just leave her alone now.
Thank you for visiting the site, I am hopeful and prayerful that my next entry will be a more positive one.
Unfortunately the doctor feels that the problem is 100% due to the amount of medication she is on. He did take pieces of the nails that were left on the affected fingers and confirmed that there was no bacteria growing. He also found the start of this on one of her toe nails.
One (of many) of my concerns right now is that on the 14th they will be doubling her medications doses because this flare up is so out of control. I asked him if we should expect more nails to be affected and any other things to happen. He compared what was happening to her body to chemotherapy.. he stated - someone dealing with chemotherapy finds their hair falling out and their nails sometimes turning black, but once the medications are completed, everything returns to normal. Well, obviously he knows little about the fact that these medications are a long term deal. IF the Remicade starts working at double the dose it would be at least a year AFTER her arthritis is under control before we would even talk about weaning her off of them. So, I didn't walk away from the appointment feeling very good about the outcome.
He did say - well, she is having a lot pumped through her body. I think it is easy to just get caught up in treating her to get her well and not think about the amount of medication she is dealing with.
Sadie's ankle is giving her a hard time along with her neck... she has not had a day that her neck has not been bothering her. With school starting in just a few days I can only pray that she will finally start feeling some relief. My prayers are for a miracle... for this to just leave her alone now.
Thank you for visiting the site, I am hopeful and prayerful that my next entry will be a more positive one.
August 29, 2006
Yesterday we had another Children’s day. First we had new blood work done as her labs from the previous week came out with a bad liver function read. The good news, the labs came back normal.
Unfortunately the visit with the Rheumatologist did not go wonderfully and I left there not only feeling as confused and concerned as I did when we walked in, but even more so. That said I will just give the short of the long. Sadie’s still very much in active flare mode… both ankles, right hip, shoulders (new), neck, jaw are all involved right now. Her neck and shoulders are probably the worst in respects to how Sadie is feeling; her neck is bothering her quite a bit. Her doctor has suggested, implemented, that we double her current Remicade dosage and keep this at every 4 weeks. In addition they will be doing a “pulse” of large quantity prednisone (steroid) right before each Remicade. What this will do is help alleviate some of Sadie’s discomfort until we can hopefully get the new dosage of Remicade working. I talked pretty candidly about my concerns that this flare up is now on month 14 and that we have been just rolling with the punches, but we are all wearing very low right now. She assured me that she has other tricks in her bag and to just continue to pray that the Remicade will start doing the job. On another issue a little over a week ago Sadie showed me that part of her thumb nail was coming off. It looks very much like she slammed it in a door or something like that, but without the dis-coloration. I thought it was strange, but was pretty sure she must have hurt it and not realized it. Then two days later her middle finger, same hand, was doing the same thing. Add a few more days to that and we added a third finger. Sadie’s rheumatologist was not concerned about the nails, but did say she had never seen such a thing. I on the other hand am very concerned about this and wasn’t so comfortable with the wait it out theory we were given. Of course prior to going to the doctor, I had used the wonderful tool Google to see what I could find on the nail issue and none of what I found sounded very good.
From there we went to PT where Sadie was given a new routine of exercises to do at home most working on her shoulders and neck.
I was not at ease after this appointment (there are several details to the situation I am choosing to leave out), so I called her regular pediatrician, Dr. Upton. She was very helpful and we had a mini-consultation about things going on with Sadie. She is doing some homework on finding a dermatologist to take a look at those nails.
Sadie starts school in one week. The start of school in active flare is always a time of concern for me. Sadie has to put forth a lot more effort during the day and doesn’t have the option to always “opt out” of activities like she does during summer. I ask that you pray for Sadie right now in a big way; pray that the Lord holds her strong with the upcoming schedule changes and upcoming medication changes. Pray that the Lord guards her from pain and shields her from side effects of the new dosing of medications and pray that the Lord hears our cries for her to find the medication needed to get this under control. I have often had to go back to this verse in times like this:
Do not be anxious about anything, but in everything, by prayer and petition, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. – Phil 4:6
One last little note: Sadie and I were “purging” her room last night and when we were going through thousands of scattered pieces of paper in her desk I came across this nicely folded group of papers in a very odd location (not w/ all the “junk”). When I opened it up it was her online guestbook that I print for her. She said she kept it in the special spot, so please know that Sadie does enjoy your comments on the website. Sometimes I only print them every other Remicade, so she may not see them right away, but she does see them!
Unfortunately the visit with the Rheumatologist did not go wonderfully and I left there not only feeling as confused and concerned as I did when we walked in, but even more so. That said I will just give the short of the long. Sadie’s still very much in active flare mode… both ankles, right hip, shoulders (new), neck, jaw are all involved right now. Her neck and shoulders are probably the worst in respects to how Sadie is feeling; her neck is bothering her quite a bit. Her doctor has suggested, implemented, that we double her current Remicade dosage and keep this at every 4 weeks. In addition they will be doing a “pulse” of large quantity prednisone (steroid) right before each Remicade. What this will do is help alleviate some of Sadie’s discomfort until we can hopefully get the new dosage of Remicade working. I talked pretty candidly about my concerns that this flare up is now on month 14 and that we have been just rolling with the punches, but we are all wearing very low right now. She assured me that she has other tricks in her bag and to just continue to pray that the Remicade will start doing the job. On another issue a little over a week ago Sadie showed me that part of her thumb nail was coming off. It looks very much like she slammed it in a door or something like that, but without the dis-coloration. I thought it was strange, but was pretty sure she must have hurt it and not realized it. Then two days later her middle finger, same hand, was doing the same thing. Add a few more days to that and we added a third finger. Sadie’s rheumatologist was not concerned about the nails, but did say she had never seen such a thing. I on the other hand am very concerned about this and wasn’t so comfortable with the wait it out theory we were given. Of course prior to going to the doctor, I had used the wonderful tool Google to see what I could find on the nail issue and none of what I found sounded very good.
From there we went to PT where Sadie was given a new routine of exercises to do at home most working on her shoulders and neck.
I was not at ease after this appointment (there are several details to the situation I am choosing to leave out), so I called her regular pediatrician, Dr. Upton. She was very helpful and we had a mini-consultation about things going on with Sadie. She is doing some homework on finding a dermatologist to take a look at those nails.
Sadie starts school in one week. The start of school in active flare is always a time of concern for me. Sadie has to put forth a lot more effort during the day and doesn’t have the option to always “opt out” of activities like she does during summer. I ask that you pray for Sadie right now in a big way; pray that the Lord holds her strong with the upcoming schedule changes and upcoming medication changes. Pray that the Lord guards her from pain and shields her from side effects of the new dosing of medications and pray that the Lord hears our cries for her to find the medication needed to get this under control. I have often had to go back to this verse in times like this:
Do not be anxious about anything, but in everything, by prayer and petition, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. – Phil 4:6
One last little note: Sadie and I were “purging” her room last night and when we were going through thousands of scattered pieces of paper in her desk I came across this nicely folded group of papers in a very odd location (not w/ all the “junk”). When I opened it up it was her online guestbook that I print for her. She said she kept it in the special spot, so please know that Sadie does enjoy your comments on the website. Sometimes I only print them every other Remicade, so she may not see them right away, but she does see them!
August 21, 2006
Camp sure did go by fast. The kids had a great time; it is a lot of fun to watch the kids together. As for the parents… I am having a similar experience to last year that it is just starting to sink in. I learned a lot of information (funny you think you know it all, but you truly don’t) and enjoyed hearing other people share their stories. This year there was a big focus on having people who were diagnosed with JRA at a younger age come share their stories as grown adults. I think the majority of the speakers had some type of JRA and their current ages ranged from 20-65. It is amazing to think how far the medications and treatments have come in a realistically short amount of time. As one of the speakers said “you have to be grateful that if the kids were going to get this disease they got it in an age with options and hope”.
I think I will allow a little more of camp to sink in before I go any further on that subject.
Sadie is doing pretty well – ankle is still being the big culprit of issue. Sadie has also been complaining that her left hip has been hurting; last night it was a four (which is a big deal for her… she rarely uses that number). She has also been complaining a lot that her back is hurting her. This complaint usually comes when she is sitting still for a long period of time and for me it is a new concern. Another concern is that her last lab tests came back with elevated liver enzymes again. Usually I know the reason for this (meds given too close to the blood draw), but this time that is not the case; it had been seven days since her meds were given. Children’s has asked that we give her methotrexate on Wednesday this week (usually Thursday nights) and then we will re-test her blood on the 28th when we go into see her rheumatologist and do some additional physical therapy. At that time I will be talking about a few other concerns I have with her and hopefully I will get some positive, reassuring feedback.
Please pray for Sadie’s little body to keep fighting and fighting hard to keep this arthritis as quite as possible. Please pray for strength and patience for Bill and I as we wait for some questions to be answered and to keep us going as this rollercoaster was a MUCH longer ride then expected.
I think I will allow a little more of camp to sink in before I go any further on that subject.
Sadie is doing pretty well – ankle is still being the big culprit of issue. Sadie has also been complaining that her left hip has been hurting; last night it was a four (which is a big deal for her… she rarely uses that number). She has also been complaining a lot that her back is hurting her. This complaint usually comes when she is sitting still for a long period of time and for me it is a new concern. Another concern is that her last lab tests came back with elevated liver enzymes again. Usually I know the reason for this (meds given too close to the blood draw), but this time that is not the case; it had been seven days since her meds were given. Children’s has asked that we give her methotrexate on Wednesday this week (usually Thursday nights) and then we will re-test her blood on the 28th when we go into see her rheumatologist and do some additional physical therapy. At that time I will be talking about a few other concerns I have with her and hopefully I will get some positive, reassuring feedback.
Please pray for Sadie’s little body to keep fighting and fighting hard to keep this arthritis as quite as possible. Please pray for strength and patience for Bill and I as we wait for some questions to be answered and to keep us going as this rollercoaster was a MUCH longer ride then expected.
August 14, 2006
Been a long time since I updated. The broken leg doc has released Sadie from his care - this is one less thing to deal with - YEAH!
Sadie did end up getting fitted for a new brace, the new brace came, it looks and feels good. The brace did not fit in her current shoes, so she got new shoes, which meant a new lift (and $100.00 later) she has cool new shoes! Thank the Lord for Nordstroms and there willingness to allow split sizes!
Sadie's last Remicade went well, we were moved to another part of the hospital and that was a bit confusing and the routine changed a bit, which made us both a little anxious, but it worked out just fine.
Days after Remicade Sadie was diagnosed with hand foot mouth which is just mostly and inconvenience, I am happy to report this chapter is over too.
PT had a good look at Sadie and the good news is that Sadie's motion in her right ankle has not decreased since the break. The left ankle on the other hand is a bit of a mess, but this is somewhat expected. So, we have home exersize and PT will become part of the plan again.
This weekend is KAT (Kids and Teens) camp for kids with Arthritis; this was a huge door for our family last year and launched our ability as a family not only except that Arthritis is part of our lives, but help us open up, share, learn, support and fight this ugly thing. We are all excited about this weekend.
Upcoming: Sadie has Remicade again this Thursday and then has an appt with her Rheumatologist on the 28th along with more PT. On the 28th we will find out if she will continue to go to Remicade every 4wks or try and stretch that out. Then a week later - back to school!!!
Jingle Bell information will start flying out soon - PLEASE email me if you are interested in joining my email list as a potential team member or if you would be interested in donating this year. Our goal $5,500.00!
Sadie did end up getting fitted for a new brace, the new brace came, it looks and feels good. The brace did not fit in her current shoes, so she got new shoes, which meant a new lift (and $100.00 later) she has cool new shoes! Thank the Lord for Nordstroms and there willingness to allow split sizes!
Sadie's last Remicade went well, we were moved to another part of the hospital and that was a bit confusing and the routine changed a bit, which made us both a little anxious, but it worked out just fine.
Days after Remicade Sadie was diagnosed with hand foot mouth which is just mostly and inconvenience, I am happy to report this chapter is over too.
PT had a good look at Sadie and the good news is that Sadie's motion in her right ankle has not decreased since the break. The left ankle on the other hand is a bit of a mess, but this is somewhat expected. So, we have home exersize and PT will become part of the plan again.
This weekend is KAT (Kids and Teens) camp for kids with Arthritis; this was a huge door for our family last year and launched our ability as a family not only except that Arthritis is part of our lives, but help us open up, share, learn, support and fight this ugly thing. We are all excited about this weekend.
Upcoming: Sadie has Remicade again this Thursday and then has an appt with her Rheumatologist on the 28th along with more PT. On the 28th we will find out if she will continue to go to Remicade every 4wks or try and stretch that out. Then a week later - back to school!!!
Jingle Bell information will start flying out soon - PLEASE email me if you are interested in joining my email list as a potential team member or if you would be interested in donating this year. Our goal $5,500.00!
July 10, 2006
Sadie went in on Friday to have her broken leg x-rayed and was released to taking the boot off for a little while at a time wearing a shoe to re-gain her balance and strength. The doctor told us “no running or jumping for the entire month” – in my head I laughed this off like there was no way you would hold her back. Then Saturday when she took the boot off for the first time I realize that she really can’t run or jump as she was having a very hard time re-adjusting to wearing a shoe. Because she had been doing so great in her boot with out crutches, it came as a surprise to both Bill and I see her have a hard time. Sunday she spend even more time out of the boot and was getting better, but defiantly isn’t walking “properly” and is putting a lot of compensation on her right leg which is an obvious concern in respects to her ankle.
At this point we will keep the boot off during any indoor activities and then when outdoors and exposed to more we will put it back on with the exception of times in which we know that she will be closely supervised and in the presents of an adult at all times. Hopefully within a short time we will see lot so improvements on her walking.
The next thing on the calendar is Remicade on the 20th however I have to put a call into Children’s to get PT re-activated. There is a break-down in communication and we have been awaiting the call ourselves, but we will call and see what the status of this is. Sadie is having some issues with her right ankle brace that need to be addressed sooner than later also.
We are not scheduled to see the Rheumatologist until the end of August; however, I do have concerns over this right ankle again. I am not sure if it is being over worked and this is why there is still swelling and stiffness and therefore I should wait or if this joint is still not under control.
One of the things I battle with is reading too much into things with her. I think it is just part of the job of mothering, but I am always watching her just a little closer and find myself paranoid when things don’t appear “right”. For example… with this boot she has not been able to take showers on her own and I have been washing her hair in the bath tub. In the last two weeks it seems her range of motion in her neck has gone down. Am I reading into this or is it going down??? I really don’t’ know. I think that I will talk to the nurse about this when I call about PT just to get an idea if we need to hang until the end of August or get her back in. Even considering that we might be taking a step backwards makes my stomach turn.
At this point we will keep the boot off during any indoor activities and then when outdoors and exposed to more we will put it back on with the exception of times in which we know that she will be closely supervised and in the presents of an adult at all times. Hopefully within a short time we will see lot so improvements on her walking.
The next thing on the calendar is Remicade on the 20th however I have to put a call into Children’s to get PT re-activated. There is a break-down in communication and we have been awaiting the call ourselves, but we will call and see what the status of this is. Sadie is having some issues with her right ankle brace that need to be addressed sooner than later also.
We are not scheduled to see the Rheumatologist until the end of August; however, I do have concerns over this right ankle again. I am not sure if it is being over worked and this is why there is still swelling and stiffness and therefore I should wait or if this joint is still not under control.
One of the things I battle with is reading too much into things with her. I think it is just part of the job of mothering, but I am always watching her just a little closer and find myself paranoid when things don’t appear “right”. For example… with this boot she has not been able to take showers on her own and I have been washing her hair in the bath tub. In the last two weeks it seems her range of motion in her neck has gone down. Am I reading into this or is it going down??? I really don’t’ know. I think that I will talk to the nurse about this when I call about PT just to get an idea if we need to hang until the end of August or get her back in. Even considering that we might be taking a step backwards makes my stomach turn.
June 20, 2006
Sadie had an awesome Remicade appointment today. Her vitals stayed normal the entire time, her IV was the easiest so far and she was feeling pretty good afterwards (just the normal tired feeling).
Praise the Lord for listening to our prayers... Sadie is finally, after months, showing on going signs of improvement.
Tonight - she walked from one side of the kitchen to the other w/ her broken leg using her toes only. We won't let her do more than that as it is "doctor's orders", but it was VERY exciting to see she could do it and pain free.
Thank you, Thank you, Thank you for your continued prayers and support. Please continue to pray that Sadie's RA will be quite and give her peace and our ultimate prayer... GO AWAY FOR GOOD!!!!
Praise the Lord for listening to our prayers... Sadie is finally, after months, showing on going signs of improvement.
Tonight - she walked from one side of the kitchen to the other w/ her broken leg using her toes only. We won't let her do more than that as it is "doctor's orders", but it was VERY exciting to see she could do it and pain free.
Thank you, Thank you, Thank you for your continued prayers and support. Please continue to pray that Sadie's RA will be quite and give her peace and our ultimate prayer... GO AWAY FOR GOOD!!!!
June 11, 2006
Lots of good news to share...
Sadie's eyes look good!
Sadie's jaw growth looks good!!
Sadie is OUT of the wheelchair!!!
Sadie is able to do what they call "toe touch" crutches for 2 weeks (this basically means her toes in her boot can touch the ground, mostly helps balance); then she will move to flat foot some weight baring for about 2 weeks and then 2 days before we go back in July we will try to have her walk without the crutches. Once we go back they will re-take x-rays and determine if she can come out of the boot. The x rays they did on Friday were interesting... the top part of her leg is healed, you can not see the break anymore, but the bottom part is not yet healed. I asked the doctor if the visible signs would be gone when the break was healed and he said yes, so we will see what it looks like next time. On a positive note; you can see new bone growth which is confirmation her body is doing what it should be - yeah!!
Since the start of March and pretty much for about a year we have had at least one doctor appointment, physical therapy or some related type of appointment - this next week NONE! Not one single appointment for the entire week, I am so excited.
The following week Sadie will have her next Remicade infusion. That will be Tuesday the 20th.
Thank you for the continued prayers... prayers do work - God is watching and listening!
Sadie's eyes look good!
Sadie's jaw growth looks good!!
Sadie is OUT of the wheelchair!!!
Sadie is able to do what they call "toe touch" crutches for 2 weeks (this basically means her toes in her boot can touch the ground, mostly helps balance); then she will move to flat foot some weight baring for about 2 weeks and then 2 days before we go back in July we will try to have her walk without the crutches. Once we go back they will re-take x-rays and determine if she can come out of the boot. The x rays they did on Friday were interesting... the top part of her leg is healed, you can not see the break anymore, but the bottom part is not yet healed. I asked the doctor if the visible signs would be gone when the break was healed and he said yes, so we will see what it looks like next time. On a positive note; you can see new bone growth which is confirmation her body is doing what it should be - yeah!!
Since the start of March and pretty much for about a year we have had at least one doctor appointment, physical therapy or some related type of appointment - this next week NONE! Not one single appointment for the entire week, I am so excited.
The following week Sadie will have her next Remicade infusion. That will be Tuesday the 20th.
Thank you for the continued prayers... prayers do work - God is watching and listening!
May 26, 2006
Remicade went very well, her BP and temp went up and down so they kept a close eye on her. Like always she was very tired and pale afterwards. She took a 3hr nap after her infusion. She is doing really well today and we hope that with the injection Monday this will kick assist the medication in helping that right ankle.
Good news; her latest labs came back in the normal range - yeah!
Next week Sadie has two appointments - one with the orthodontist who is monotering her jaw growth and the other is the eye doctor to make sure her eyes check out (arthritis can affect the eyes, but for Sadie her eyes have always checked out good).
Can you believe we are half way through this year all ready! wow!
Good news; her latest labs came back in the normal range - yeah!
Next week Sadie has two appointments - one with the orthodontist who is monotering her jaw growth and the other is the eye doctor to make sure her eyes check out (arthritis can affect the eyes, but for Sadie her eyes have always checked out good).
Can you believe we are half way through this year all ready! wow!
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