I am lately debating to change the headline of our Blog since the more I think about it we as a family have changed in many ways due to JDM but it has not defined us or brought us to our knee's, so we are still heading forward on our journey and I am ready for JDM to take a bit of a backseat.
Yes, while typing this I am worried a bit that my arrogance might bite me in the behind, and it is fragile to think JDM is behind us when Connor is far from Remission and still gets his Chemo treatment once a week and IVIG Infusions once a month, plus of course the daily Steroids .... BUT... here is why I am hopeful: three months ago we had to stop the Solumedrol Infusion due to Connor contracting Strep ... the shock was that he showed no reaction to missing the infusion. We the stopped cold turkey and did not resume the infusion for the last two months. We also kept cutting back on his oral steroids (Prednisone) and we are down now to 1 ml a day!!!! this is really amazing. So how is Connor reacting to all this? Not at all! He is doing amazing and seems stronger and stronger all the time. Last week during Hippo Therapy, Amanda his Therapist, asked me if I have noticed any changes in Connor. So right away I was worried she would point some weakness out that I had not caught but she had observed during his Therapy. Imagine my surprise when I said no and she smiled at me and said that the only change she sees is how much stronger he is getting each week she sees him. Now all this after I made the call four months ago to stop all the Therapies other then Hippo due to Connor's mental state of being burned out to be dragged to places he did not enjoy. Instead we turned his 'Therapy' into free play in the forest around our house. He is back to climbing tree's, jumping on the Trampoline and doing everything his brother is doing. Yes, he still is not as flexible as Alexander but hey, one year ago he was hardly walking at all and sitting in a wheelchair most of the day! Oh, and I almost forgot but for the first time since he got sick his blood level showed that he is not anemic anymore. We are not sure if it is the Iron Supplement that is helping it all but it is the one change Dr. Soep did and now we are finally seeing good numbers on that end as well :)
Now back to my arrogance .... many might say that Connor and we as a family are just lucky..... but I tell you that my believe is 'luck' has NOTHING to do with it. We as a family have battled through a Tethered Spinal Cord Surgery for Alexander when he was just 1 1/2 years old. Connor followed suit just 8 months later with the same diagnosis. Even then we did not go with the average team but opted to find the best Doctors in the field to perform a surgery that could have left the boys paralyzed. We went against our insurance plan back then and payed for a team what we believe even today was better equipped to handle that kind of surgery. The boys were in the hands of the Neurosurgical Team at The Children's Hospital in Dallas who just a couple of months prior had separated the famous Egyptian Twins. One of the Doctors working with that Team, Dr. Angela Price, was the most amazing Doctor we ever met. Yes, even then we looked for what we thought was the best and luck had nothing to do with it. We ended up paying about $20,000 out of pocked for each surgery and we have no regrets!
Same is my feeling for how we moved as a family against JDM. We got the diagnosis from one place but then moved on to find the best fit for us and that was without question Dr. Pachman and her Team, including Dr. Curran at CMH in Chicago. We then were guided through Dr. Curran to Dr. Soep in Denver. Nothing was coincidence. Granted, I talk big right now especially since Connor is not out of the woods but his getting better truly is due to hard work on his part, having done our Research and then being guided by the best Team we could ask for.
So, my stance today is that I am in awe of the battle mode our two little dumplings have been since birth. NOTHING was handed to Connor and Alexander since birth but they fought since being born prematurely at the 32 week at 3 lbs each. Alexander was diagnosed with Seizures before we got them and even that he overcame and was weaned off after two months of being home. He then had his surgery to repair his spinal cord and Connor followed suit shortly after. Instead of thinking we had this behind us (there is a % chance of the Spinal Cord Reattaching but we always keep an eye on signs for it), we then were thrown into the whirl pool of JDM. After one year and 5 months I think we are once again moving forward.
So if I can ever preach something and hope that it will find an open ear it will be the fact that I want you to NEVER settle for second best and NEVER go with the first opinion. If you or a loved one gets sick then question, do research and PLEASE do not end up in your neighborhood medical clinic just because it is convenient. You can go there if they turn out to be the best in that field BUT DO NOT go their because it is easier. Trust me, if you do and something goes wrong you will always question yourself. On the reverse end if you do everything in your power and you still fail then at least you have the comfort of knowing you did all you could and you lost the fight not because you laid down and gave up. By now I know and I am confident that all four of us in this house will never go down without a fight. It is not in our personality. Like my friend Sonya posted today, Connor and Alexander are little warriors and I think it is because their minds are strong.
So this post is for Connor and Alexander who make me so proud each day and who are the ones who have and still show me what real courage is all about. They are doing this at age 7! I can't wait how they will shake up the world when they have the age and power to do it :)
Never will I be able to put into words how much I love them with every being of my soul.
Hugs,
R A C A
Yes, while typing this I am worried a bit that my arrogance might bite me in the behind, and it is fragile to think JDM is behind us when Connor is far from Remission and still gets his Chemo treatment once a week and IVIG Infusions once a month, plus of course the daily Steroids .... BUT... here is why I am hopeful: three months ago we had to stop the Solumedrol Infusion due to Connor contracting Strep ... the shock was that he showed no reaction to missing the infusion. We the stopped cold turkey and did not resume the infusion for the last two months. We also kept cutting back on his oral steroids (Prednisone) and we are down now to 1 ml a day!!!! this is really amazing. So how is Connor reacting to all this? Not at all! He is doing amazing and seems stronger and stronger all the time. Last week during Hippo Therapy, Amanda his Therapist, asked me if I have noticed any changes in Connor. So right away I was worried she would point some weakness out that I had not caught but she had observed during his Therapy. Imagine my surprise when I said no and she smiled at me and said that the only change she sees is how much stronger he is getting each week she sees him. Now all this after I made the call four months ago to stop all the Therapies other then Hippo due to Connor's mental state of being burned out to be dragged to places he did not enjoy. Instead we turned his 'Therapy' into free play in the forest around our house. He is back to climbing tree's, jumping on the Trampoline and doing everything his brother is doing. Yes, he still is not as flexible as Alexander but hey, one year ago he was hardly walking at all and sitting in a wheelchair most of the day! Oh, and I almost forgot but for the first time since he got sick his blood level showed that he is not anemic anymore. We are not sure if it is the Iron Supplement that is helping it all but it is the one change Dr. Soep did and now we are finally seeing good numbers on that end as well :)
Now back to my arrogance .... many might say that Connor and we as a family are just lucky..... but I tell you that my believe is 'luck' has NOTHING to do with it. We as a family have battled through a Tethered Spinal Cord Surgery for Alexander when he was just 1 1/2 years old. Connor followed suit just 8 months later with the same diagnosis. Even then we did not go with the average team but opted to find the best Doctors in the field to perform a surgery that could have left the boys paralyzed. We went against our insurance plan back then and payed for a team what we believe even today was better equipped to handle that kind of surgery. The boys were in the hands of the Neurosurgical Team at The Children's Hospital in Dallas who just a couple of months prior had separated the famous Egyptian Twins. One of the Doctors working with that Team, Dr. Angela Price, was the most amazing Doctor we ever met. Yes, even then we looked for what we thought was the best and luck had nothing to do with it. We ended up paying about $20,000 out of pocked for each surgery and we have no regrets!
Same is my feeling for how we moved as a family against JDM. We got the diagnosis from one place but then moved on to find the best fit for us and that was without question Dr. Pachman and her Team, including Dr. Curran at CMH in Chicago. We then were guided through Dr. Curran to Dr. Soep in Denver. Nothing was coincidence. Granted, I talk big right now especially since Connor is not out of the woods but his getting better truly is due to hard work on his part, having done our Research and then being guided by the best Team we could ask for.
So, my stance today is that I am in awe of the battle mode our two little dumplings have been since birth. NOTHING was handed to Connor and Alexander since birth but they fought since being born prematurely at the 32 week at 3 lbs each. Alexander was diagnosed with Seizures before we got them and even that he overcame and was weaned off after two months of being home. He then had his surgery to repair his spinal cord and Connor followed suit shortly after. Instead of thinking we had this behind us (there is a % chance of the Spinal Cord Reattaching but we always keep an eye on signs for it), we then were thrown into the whirl pool of JDM. After one year and 5 months I think we are once again moving forward.
So if I can ever preach something and hope that it will find an open ear it will be the fact that I want you to NEVER settle for second best and NEVER go with the first opinion. If you or a loved one gets sick then question, do research and PLEASE do not end up in your neighborhood medical clinic just because it is convenient. You can go there if they turn out to be the best in that field BUT DO NOT go their because it is easier. Trust me, if you do and something goes wrong you will always question yourself. On the reverse end if you do everything in your power and you still fail then at least you have the comfort of knowing you did all you could and you lost the fight not because you laid down and gave up. By now I know and I am confident that all four of us in this house will never go down without a fight. It is not in our personality. Like my friend Sonya posted today, Connor and Alexander are little warriors and I think it is because their minds are strong.
Never will I be able to put into words how much I love them with every being of my soul.
Hugs,
R A C A
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