This summer I was really taking a break from writing due to having found a new Therapy outlet and I can tell you it does not come very easy right now to sit down and to take a break to put some words on paper but I know I owe some updates to my family so here it goes :)
This summer has been flying by at such a fast speed and it has been wonderful in so many ways. We took some trips as a family and the gypsy in me has not been this happy since JDM came along. I love being on the move but I also take great pleasure being home and spending time with my three favorite men in the world.
JDM did throw us one speed bump, a scary and huge reminder that it is still with us even when it makes it easy to forget at times because Connor has been so active for the last month. Most of the days the only reminder there is are the medications he has to take, but even this is such a routine now. Even traveling with all the Medications has become second nature. No more worries about keeping them cool or dealing with TSA as we found both to not be an issue at all.
The one speed bump came during the week of August the 25th. Two weeks prior the boys entered a Basketball Camp here in Lake George and the week prior we went on a Colorado trip to Pagosa Springs, Durango, Silverton & Ouray and all went extremely well. The boys got a lot of pool time which they loved. We came back and the following week Connor started complaining about his Bike not 'working right'. We watched him fall off it more frequent and it seemed to Ron and I as if his balance was off. Alexander took several turns on the bike but had no issues at all (the beauty and the curse we found in dealing with JDM and having Identical Twins ... you always have the comparison factor, in a good and bad way). The next couple days I watched Connor more and more walking on his tip toes again and complaining about pain in his legs. He also had this strange occurrence of his leg boggling under him while walking. Now here is the great part about the stage we are in. I was due to send an e-mail to Dr. Soep about an update on Connor and also about us discussing the tapering of Steroids and stretching out the IVIG. I e-mailed our concerns on Tuesday morning around 10 am and by noon I had a phone call from her! I tell you I will never be able to express the gratitude we have in knowing we have the greatest, best, most knowledgeable, reliable and most compassion doctors on our team. Nothing will beat this feeling no matter how angry I can get at JDM and the hand Connor was dealt. If Connor has any issues at all I can still go to bed and know we are in good hands and everything in our power is being done! So to get back to the phone call, Dr. Soep was very concern that he might be starting a Flare and wanted him in for Blood Labs as soon as possible. She was also concern that she would be leaving for her vacation and that she wanted to know what was going on before she left. So Connor, Alexander and I headed to TCH on Thursday for his Blood test and also to push the IVIG and Methrotrexate in two weeks prior then scheduled. The decision we made was due to there fact that it could not hurt him as he used to be on the 4 weeks schedule just a couple months earlier. If something was brewing we could give it a kick in the behind ;) with the IVIG. At least this was our hope. We also had the pleasure to finally meet Michelle, Dr. Soep's Nurse who has been our Angel through the very beginning of our journey with TCH. We had never met in person but had talked so many many times at the phone. She has been my rock when we first brought Connor home and all the medical schedules and infusions at home seemed so scary and over whelming. What a patient and wonderful soul she is!
Now here was the interesting part. Connor blood test came back normal or better said, not any different then it was last month. All looked good and he showed great strength when Michelle tested him. Now our question is if Connor had been so active this last two weeks prior, that maybe what he was dealing with was normal soreness in his muscles from just 'exercising' to much? I mean, here he was running, swimming and riding his bike. He might have gotten scared because the only thing he can remember was the first time his muscles hurt let him to being in a wheel chair? so maybe he could not separate the feeling of it? I don't know!
Now the day after the Infusion we left for TX to have a very busy weekend that included a very fun Baby Shower for Jessica, a fun afternoon Bowling for the kids with Dylan, Ryan, David, Aaron, Charlie & Bruce for a boys day out, while we Girls, Heidi, Sonya and Ana had a most wonderful and fun Night out at Sushi Sam. The next day we started out with a yummy Brunch and Play Date at the Tossell 'Hotel' and it was so wonderful for me to see all six kids back together, as David said the original Six Pack ;) which makes Heidi, Sonya and I the original Three Musketeers :) We then went to a Gymnastics Kids Birthday Party in the afternoon for Aidan's 8th Birthday and then back on the Plane right after the party for HOME, Ron and the precious cool Temperatures of Colorado. Connor did have a tummy ache the first day we arrived in TX and then a bad headache the following day but this could have been due to the IVIG or being dehydrated since the TX head of 100 plus temps really got to all of us. I can tell you now a week later he is doing very well and as I am typing this he is running outside and already rode his Bike today and played Basketball .....
As to my husband, his recovery is going slow but steadily as he is getting more movements. He has been in a lot of pain and discomfort but he is making progress. His range of motion is getting better and his schedule is busy with Therapies twice weekly and Doctor visits. Having him home has been a very special treat to all of us and we can say that there is no worry when the time comes and he retires ... which he is still aiming at 65. We do know we get along very well :) and I guess we will not need the counseling sessions AA recommends for Flight Crews that retire reenter 'normal' life :) I guess it turns out the four of us make a great Flight Crew here at home :)
My update from the last time I wrote has been the accomplishment of starting to climb the Manitou Incline at first once a week and now twice a week. For anyone that knows me knows I had a hard time my whole life to find an exercise routine that kept me entertained and motivated, and I am so thrilled and proud of myself that at age 40 I think I found my calling. I love the hike up the Incline and I even manage now to run down the 3 to 4 mile trail back to the car. Now all of this was possible to the patience of Allison Simpson, who truly has the patience of an Angel for coaching me up the Incline. This is a girl who has been running the Pikes Peak Marathon now for 6 years in a row!!! and for her to go slow down and motivate me has been such a gift. Now I had my sixth ascend this past Friday and my mission is to go twice a week from here on out. I had the pleasure of going with Jamie once as well and three times with Jeff. I know I am lucky to have hiking partners but thanks to my husband and my little bottle of Pepper Spray I will be attempting this by myself as well when friends are unable to go. I am fascinated that it took me this long and so many years for it to 'click' and be conscious about being healthier, but I am happy it happened now. I do think I am getting in better shape then I was at age 20 and that does not mean body shape but my endurance and energy as well. I love it and it is a huge part of why I am not writing as much as well, as my outlet and Therapy had been the Blog in the past and now it is the conversations I have with myself while I drag myself 1 mile straight up the Incline ;) So, if you are looking for a motivation to start then please look at me ... if I can start at zero at age 40 then so can you! trust me the payoff is wonderful and addictive. No, I most likely will never run a Marathon but I did sign up for my first 5K for the 13th of August ;)
We also added a new Family Member to our Clan. We are now a Family with a Cat :) We added little Miss Bella to our family last Sunday and it has been a lot of fun. I admit I did not know what it would be like having a cat in the home but I am sold! She is so sweet and smart. Very independent but goodness, she never had one accident and has been Littler Box trained from day one at nine weeks old. Thinking how long it takes to train a puppy I am truly in awe. She has taken to Ron in many ways and will be in his lab or on top of his pillow most of the time. The boys are in love with having a pet indoors and so are we.
On a sad note for us but a happy note to our friends Shelly, Claire and Alexander, we found out this week that they will be leaving Colorado to move back home to Lake Tahoe. Shelly got a job in Lake Tahoe and will start in just a couple of weeks. Claire and Alexander will stay behind until their home sells and then it will be there turn to follow Shelly. I know they have not been to happy here and were craving their return to CA but it will be a huge loss for us. They have been wonderful friend's and family. My comfort has to be that they are moving to one of the most beautiful places in the USA and that now I have a new destination to add to my places to see :) I always said if Friends and Family have to leave us that at least they should pick a place this Gypsy here loves to see :) So I still have San Fran, NYC and the East Coast on places I love to visit so if anyone of you even considers moving from here (which you should NOT) then maybe look at this list first - haha.
Anyway, Wishing them nothing but the BEST, and Thank You Shelly & Claire for making us feel at Home when we first came to LG and for being there every step when Connor got sick!!! You always 'understood' me and I knew I could always be myself around you ... good or bad!!! You might be moving but you will always be a part of our life!
Hugs,
R A C A
This summer has been flying by at such a fast speed and it has been wonderful in so many ways. We took some trips as a family and the gypsy in me has not been this happy since JDM came along. I love being on the move but I also take great pleasure being home and spending time with my three favorite men in the world.
JDM did throw us one speed bump, a scary and huge reminder that it is still with us even when it makes it easy to forget at times because Connor has been so active for the last month. Most of the days the only reminder there is are the medications he has to take, but even this is such a routine now. Even traveling with all the Medications has become second nature. No more worries about keeping them cool or dealing with TSA as we found both to not be an issue at all.
The one speed bump came during the week of August the 25th. Two weeks prior the boys entered a Basketball Camp here in Lake George and the week prior we went on a Colorado trip to Pagosa Springs, Durango, Silverton & Ouray and all went extremely well. The boys got a lot of pool time which they loved. We came back and the following week Connor started complaining about his Bike not 'working right'. We watched him fall off it more frequent and it seemed to Ron and I as if his balance was off. Alexander took several turns on the bike but had no issues at all (the beauty and the curse we found in dealing with JDM and having Identical Twins ... you always have the comparison factor, in a good and bad way). The next couple days I watched Connor more and more walking on his tip toes again and complaining about pain in his legs. He also had this strange occurrence of his leg boggling under him while walking. Now here is the great part about the stage we are in. I was due to send an e-mail to Dr. Soep about an update on Connor and also about us discussing the tapering of Steroids and stretching out the IVIG. I e-mailed our concerns on Tuesday morning around 10 am and by noon I had a phone call from her! I tell you I will never be able to express the gratitude we have in knowing we have the greatest, best, most knowledgeable, reliable and most compassion doctors on our team. Nothing will beat this feeling no matter how angry I can get at JDM and the hand Connor was dealt. If Connor has any issues at all I can still go to bed and know we are in good hands and everything in our power is being done! So to get back to the phone call, Dr. Soep was very concern that he might be starting a Flare and wanted him in for Blood Labs as soon as possible. She was also concern that she would be leaving for her vacation and that she wanted to know what was going on before she left. So Connor, Alexander and I headed to TCH on Thursday for his Blood test and also to push the IVIG and Methrotrexate in two weeks prior then scheduled. The decision we made was due to there fact that it could not hurt him as he used to be on the 4 weeks schedule just a couple months earlier. If something was brewing we could give it a kick in the behind ;) with the IVIG. At least this was our hope. We also had the pleasure to finally meet Michelle, Dr. Soep's Nurse who has been our Angel through the very beginning of our journey with TCH. We had never met in person but had talked so many many times at the phone. She has been my rock when we first brought Connor home and all the medical schedules and infusions at home seemed so scary and over whelming. What a patient and wonderful soul she is!
Now here was the interesting part. Connor blood test came back normal or better said, not any different then it was last month. All looked good and he showed great strength when Michelle tested him. Now our question is if Connor had been so active this last two weeks prior, that maybe what he was dealing with was normal soreness in his muscles from just 'exercising' to much? I mean, here he was running, swimming and riding his bike. He might have gotten scared because the only thing he can remember was the first time his muscles hurt let him to being in a wheel chair? so maybe he could not separate the feeling of it? I don't know!
Now the day after the Infusion we left for TX to have a very busy weekend that included a very fun Baby Shower for Jessica, a fun afternoon Bowling for the kids with Dylan, Ryan, David, Aaron, Charlie & Bruce for a boys day out, while we Girls, Heidi, Sonya and Ana had a most wonderful and fun Night out at Sushi Sam. The next day we started out with a yummy Brunch and Play Date at the Tossell 'Hotel' and it was so wonderful for me to see all six kids back together, as David said the original Six Pack ;) which makes Heidi, Sonya and I the original Three Musketeers :) We then went to a Gymnastics Kids Birthday Party in the afternoon for Aidan's 8th Birthday and then back on the Plane right after the party for HOME, Ron and the precious cool Temperatures of Colorado. Connor did have a tummy ache the first day we arrived in TX and then a bad headache the following day but this could have been due to the IVIG or being dehydrated since the TX head of 100 plus temps really got to all of us. I can tell you now a week later he is doing very well and as I am typing this he is running outside and already rode his Bike today and played Basketball .....
As to my husband, his recovery is going slow but steadily as he is getting more movements. He has been in a lot of pain and discomfort but he is making progress. His range of motion is getting better and his schedule is busy with Therapies twice weekly and Doctor visits. Having him home has been a very special treat to all of us and we can say that there is no worry when the time comes and he retires ... which he is still aiming at 65. We do know we get along very well :) and I guess we will not need the counseling sessions AA recommends for Flight Crews that retire reenter 'normal' life :) I guess it turns out the four of us make a great Flight Crew here at home :)
My update from the last time I wrote has been the accomplishment of starting to climb the Manitou Incline at first once a week and now twice a week. For anyone that knows me knows I had a hard time my whole life to find an exercise routine that kept me entertained and motivated, and I am so thrilled and proud of myself that at age 40 I think I found my calling. I love the hike up the Incline and I even manage now to run down the 3 to 4 mile trail back to the car. Now all of this was possible to the patience of Allison Simpson, who truly has the patience of an Angel for coaching me up the Incline. This is a girl who has been running the Pikes Peak Marathon now for 6 years in a row!!! and for her to go slow down and motivate me has been such a gift. Now I had my sixth ascend this past Friday and my mission is to go twice a week from here on out. I had the pleasure of going with Jamie once as well and three times with Jeff. I know I am lucky to have hiking partners but thanks to my husband and my little bottle of Pepper Spray I will be attempting this by myself as well when friends are unable to go. I am fascinated that it took me this long and so many years for it to 'click' and be conscious about being healthier, but I am happy it happened now. I do think I am getting in better shape then I was at age 20 and that does not mean body shape but my endurance and energy as well. I love it and it is a huge part of why I am not writing as much as well, as my outlet and Therapy had been the Blog in the past and now it is the conversations I have with myself while I drag myself 1 mile straight up the Incline ;) So, if you are looking for a motivation to start then please look at me ... if I can start at zero at age 40 then so can you! trust me the payoff is wonderful and addictive. No, I most likely will never run a Marathon but I did sign up for my first 5K for the 13th of August ;)
We also added a new Family Member to our Clan. We are now a Family with a Cat :) We added little Miss Bella to our family last Sunday and it has been a lot of fun. I admit I did not know what it would be like having a cat in the home but I am sold! She is so sweet and smart. Very independent but goodness, she never had one accident and has been Littler Box trained from day one at nine weeks old. Thinking how long it takes to train a puppy I am truly in awe. She has taken to Ron in many ways and will be in his lab or on top of his pillow most of the time. The boys are in love with having a pet indoors and so are we.
On a sad note for us but a happy note to our friends Shelly, Claire and Alexander, we found out this week that they will be leaving Colorado to move back home to Lake Tahoe. Shelly got a job in Lake Tahoe and will start in just a couple of weeks. Claire and Alexander will stay behind until their home sells and then it will be there turn to follow Shelly. I know they have not been to happy here and were craving their return to CA but it will be a huge loss for us. They have been wonderful friend's and family. My comfort has to be that they are moving to one of the most beautiful places in the USA and that now I have a new destination to add to my places to see :) I always said if Friends and Family have to leave us that at least they should pick a place this Gypsy here loves to see :) So I still have San Fran, NYC and the East Coast on places I love to visit so if anyone of you even considers moving from here (which you should NOT) then maybe look at this list first - haha.
Anyway, Wishing them nothing but the BEST, and Thank You Shelly & Claire for making us feel at Home when we first came to LG and for being there every step when Connor got sick!!! You always 'understood' me and I knew I could always be myself around you ... good or bad!!! You might be moving but you will always be a part of our life!
Hugs,
R A C A
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