Thank you everyone for all the great birthday wishes for Kindahl, Khloe and myself! Thursday and Friday were wonderful days for the girls and yesterday was just as nice for me!
Larry and I enjoyed chaperoning the prom last Saturday night. I would say all the kids attending (the ballroom was packed at the Davis Conference Center) had a fabulous night to remember. Jamin and Kaitlin both had terrific dates and it was fun to have all of theirs, and also Jonah's friends, say hello through out the night. As chaperones we got to have our picture done by the photographers there so we had Jamin and Kaitlin pose with us for a typical prom night "group picture" that will be added to the Lewis Family memory album.
Larry's cousin Tom and his wife Sherry came into town Saturday night and their daughters Jessica and Amanda, along with Jessica's fiance Daniel, came up from Provo yesterday for a visit. We had a great time...especially the Wii competition in the evening that had us all yelling and cheering and Khloe having to take breaks to calm down her breathing and blood pressure! The Lewis branch of the family hear by issues a challenge to the Hickman branch for further family competitions! :-) I would imagine that just between Jess and Daniel and Karissa and Troy our family honors will be kept at a high performance level!!
Khloe is having a quiet day today to make up for all the excitement yesterday. She decided to not use her wheelchair at church and she did very well, and even though her breathing and blood pressures were labored several times last night, activity like this is too important to all of our mental well-being to keep her away from it. Who wants to constantly have to sit out on family fun or not do things at all in case it could cause a problem? And who wants to be the one having to enforce it? The answer to both is no-one and the even better answer is that doing things like this are more helpful than the possible risk of causing harm. So...bring on the fun!
Along with all this Khloe has decided she would be happier having her bed back upstairs with the other kids so today we (meaning Karissa and I) are also moving bedrooms around. She can go up the stairs now a couple of times a day with sitting to rest on the landing and she enjoys being up there with all of her siblings, so for now this is another thing we can do for her mental health (which we are learning can be as equally important in how she feels as all the medical support). She will need to plan her trips up or down so that she is only taking the stairs a couple of times each day and this will take some getting used to; for now I am preparing to be her "gopher" but I hope it wont take too long for her to be used to thinking ahead for what she needs and where she wants to be. We know that this is a temporary situation and that at some point in the future her physical needs will again dictate a different place for her bedroom, but since we don't know when that will be, this is the decision today. I want to add a HUGE thank you to Khloe's sisters who, out of necessity, are having to move their things around and adapt to different rooms/closet spaces in order to have the best possible arrangement for Khloe and her medical equipment...I am so proud of each of you and the understanding you show! And the boys, too, for all their help (even though they are glad that being the only boys means they never have to move bedrooms!)...ALL of my kids are WONDERFUL!!!!!
Monday, April 20, 2009
Thursday, April 16, 2009
Happy Birthday to Kindahl and tomorrow to Khloe!!!
We have had a great and tiring day (sounds like the title of a book!). It began with Kindahl's birthday celebration this morning at 6:30am (when you have kids that work in the evenings it is the only family time!) and for those of you that know of our birthday breakfast tradition, she chose Cinnamon Toast Crunch! Oh, and birthday pictures are even more fun when everyone is still in pajamas with messy hair!! :-) So we were all in great spirits as we left to go our to our destinations and it was a great day from then on! The tiring part was the full day of Khloe's dr visits...and I mean FULL DAY! We had an exam with her heart failure specialist at 10:30, and medicine given at 11, followed by blood pressure checks at 11:30, 12:00, 12:30 and 12:50pm, with walking or resting requirements in-between and another dose of medicine. Then we saw her scleroderma specialist at 1:00pm followed by a return to the blood pressure checks at 2:00pm, 2:30 and 3:00 at which time we saw the heart failure specialist again for a final visit. Maybe exhausting would be the better word! Khloe did wonderfully well though she promptly fell asleep the minute we were in the car for the ride home!
Her visits resulted in the following information/changes/goals: as far as her scleroderma it has not changed much throughout her body but we have noticed a decrease in her mobility and range of motion. This is probably due to her not being able to do her stretching or any exercising and therefore will stay this way until she can move more and then it will be a wait and see what response we get. Her finger tip ulcers remain under control with no new lesions and her reflux is also under control, supported by the GJ tube. With her heart, Khloe was able to walk up to four and a half minutes before needing to rest and catch her breath and is still needing to sleep two to four hours during the day as well as about ten hours at night. While we did not reach the goal of ten minutes of walking the dr feels it is still obtainable and that as we work on the right dose of medicines she would also like to see Khloe having more energy and feeling less worn out. It was obvious that Khloe is also retaining fluids so a new medicine was prescribed to help with that. The dr is upping the dose of one medicine to work at keeping her blood pressure consistently lower, and let us know that the dosage may need to increse again. They are concerned about the "angina" problem, especially lasting as long as it did so we are now to put her on her oxygen right away and come straight into the heart clinic if a prolonged episode occurs, and Khloe is currently wearing a Holter Monitor for 24 hours of continuous ekg readings for them to review. We return in a month for another echo and visit with the heart failure doc, with a plan for future visits to do stress and exercise testing on her heart when she is stronger. No labs or blood draws were needed today since it was all done last week in the ER and Khloe was really happy about that!
Khloe was also happy to have her Make-A-Wish friend Mandi deliver the scrapbook to us today that was made of our trip to Florida; she met us at the end of our drs visits and it was a great way to end our day at the hospital...Thanks Mandi! And to make the day even better, Khloe's friend Emma and her mom Lori drove up to meet us at the hospital and spent a good part of the day with us. Emma also has Scleroderma with alot of the same issues Khloe has, but because this disease can be very different in each individual, she has had some challenges that Khloe has not, just as Khloe deals with some that Emma doesn't. It has been a great comfort for Khloe to know someone her age who also lives with this illness and today it was wonderful for them to talk, and compare, and commiserate, and laugh, and share with a friend who can really understand. It was very nice to spend the time together with them and both Khloe and I were uplifted by their support of us...Thank you Lori and Emma for taking the time to come!
Back at home tonight we had Kindahl's birthday dinner of both hard and soft Tacos (of course when it is your birthday you can have whatever combination of food you want!) followed by chocolate cupcakes with chocolate frosting courtesy of Karissa, with the sprinkles on the cupcakes provided by Kimberlie. We heard from Kindahl about the great day she had and then later she went to cheer practice and three of the older kids went to work. Khloe called it a night at 7:45pm and Kimber followed at 8:00, though she had to get up and "show me something" before settling down by 8:20. Now at 10:44pm everyone is back home and most of them are in bed for the night.
Thus ends our "great and tiring day", with plans to do it all again tomorrow, at least the great part and probably the tiring part too, as we celebrate Khloe's birthday. So think of us in our pjs and messy hair at 6:30am, and for those of you who can still be in bed at that time, while I may envy you the warmth and comfort, I wouldn't trade places with you for anything! :-)
(BTW...for Khloe we will be having Cookie Crisp!)
Her visits resulted in the following information/changes/goals: as far as her scleroderma it has not changed much throughout her body but we have noticed a decrease in her mobility and range of motion. This is probably due to her not being able to do her stretching or any exercising and therefore will stay this way until she can move more and then it will be a wait and see what response we get. Her finger tip ulcers remain under control with no new lesions and her reflux is also under control, supported by the GJ tube. With her heart, Khloe was able to walk up to four and a half minutes before needing to rest and catch her breath and is still needing to sleep two to four hours during the day as well as about ten hours at night. While we did not reach the goal of ten minutes of walking the dr feels it is still obtainable and that as we work on the right dose of medicines she would also like to see Khloe having more energy and feeling less worn out. It was obvious that Khloe is also retaining fluids so a new medicine was prescribed to help with that. The dr is upping the dose of one medicine to work at keeping her blood pressure consistently lower, and let us know that the dosage may need to increse again. They are concerned about the "angina" problem, especially lasting as long as it did so we are now to put her on her oxygen right away and come straight into the heart clinic if a prolonged episode occurs, and Khloe is currently wearing a Holter Monitor for 24 hours of continuous ekg readings for them to review. We return in a month for another echo and visit with the heart failure doc, with a plan for future visits to do stress and exercise testing on her heart when she is stronger. No labs or blood draws were needed today since it was all done last week in the ER and Khloe was really happy about that!
Khloe was also happy to have her Make-A-Wish friend Mandi deliver the scrapbook to us today that was made of our trip to Florida; she met us at the end of our drs visits and it was a great way to end our day at the hospital...Thanks Mandi! And to make the day even better, Khloe's friend Emma and her mom Lori drove up to meet us at the hospital and spent a good part of the day with us. Emma also has Scleroderma with alot of the same issues Khloe has, but because this disease can be very different in each individual, she has had some challenges that Khloe has not, just as Khloe deals with some that Emma doesn't. It has been a great comfort for Khloe to know someone her age who also lives with this illness and today it was wonderful for them to talk, and compare, and commiserate, and laugh, and share with a friend who can really understand. It was very nice to spend the time together with them and both Khloe and I were uplifted by their support of us...Thank you Lori and Emma for taking the time to come!
Back at home tonight we had Kindahl's birthday dinner of both hard and soft Tacos (of course when it is your birthday you can have whatever combination of food you want!) followed by chocolate cupcakes with chocolate frosting courtesy of Karissa, with the sprinkles on the cupcakes provided by Kimberlie. We heard from Kindahl about the great day she had and then later she went to cheer practice and three of the older kids went to work. Khloe called it a night at 7:45pm and Kimber followed at 8:00, though she had to get up and "show me something" before settling down by 8:20. Now at 10:44pm everyone is back home and most of them are in bed for the night.
Thus ends our "great and tiring day", with plans to do it all again tomorrow, at least the great part and probably the tiring part too, as we celebrate Khloe's birthday. So think of us in our pjs and messy hair at 6:30am, and for those of you who can still be in bed at that time, while I may envy you the warmth and comfort, I wouldn't trade places with you for anything! :-)
(BTW...for Khloe we will be having Cookie Crisp!)
Monday, April 13, 2009
Monday April 13th, 2009
I was just re-reading my post from a week ago...how time flies and how things can change so quickly! We really did have a great spring break, but the projected activities turned out a bit different than what I had planned!
Last Wednesday evening about 9:30pm Khloe started having heart pains, the same type that she was having when we went into the ICU in March. It is a stabbing type pain that seems to circle within her heart, backing off to a dull ache and in the past has come and gone in about 5-10 minute episodes a few times a day, but Wednesday night it started being continuous on into Thursday morning. We spoke with the cardiology team several times from midnight on but because there were no other symptoms (shortness of breath, lightheadedness, etc) we did not go in to the hospital until Thursday afternoon when the drs became concerned that it was still happening. So off Khloe, Larry and I go to Primary's ER at a little after 4pm where they did another full work up on her heart...labs, ekg, Echo. Everything looked good, just one slight slip in her heart function on the Echo but they called it "borderline" and because everything else was still within normal parameters we got to go home at 10:30pm. Apparently she is having what is called "angina" or pain associated with less blood flow through the heart and while she has had it before, this time the worry was that it lasted so much longer (over 27 hours) than the past 5 to 10 minutes. All that can be done when this happens is Tylenol for the discomfort, unless other symptoms of distress are present and then we are now under orders to go straight to the ER if that occurs. Beside all the discomfort because of the pain and then being extremely worn out and tired because of lack of sleep, Khloe was fine after everything calmed down and after having Friday to recover was back to her "new normal" by Saturday. I, on the other hand, am still trying to get on top of being constantly tired but feeling too much stress to get any decent sleep; it goes with the territory I guess. :-) . But the humor for the week helps...this time for our trip to the hospital I took a moment to pack a bag with a couple of days worth of clothing and personal items in case we ended up staying again as the last two times I was not prepared and Larry had to bring things the next day. Well, Khloe, Larry and I decided that because I did this, we got to go home, so now we have decided that I need to take a packed suitcase along for each dr's visit just to make sure we don't have to stay!
I do want to share something with all of you that I was thinking about Wednesday night while sitting up watching over Khloe...many of you remember that when we adopted Khloe we had several delays in going to court to finalize her adoption because her birth father kept filing appeals to overturn the termination of his parental rights. Though there were no grounds to support his appeals, he had the right to file all the way to the Washington Supreme Court (a process of 4 levels of appeals), which he did, causing a little over a year of waiting for our family. The second time he filed an appeal, we had already scheduled the court date, followed by our temple sealing date because no birth parent in Washington had ever filed any more appeals after a first attempt, mainly because after that first attempt they had to finance the appeals process on their own instead of having a court appointed attorney. So, as I was preparing to drive in to teach a class to other prospective foster/adopt parents, I got a phone call from our very agitated and apologetic social worker telling me we had to cancel our plans for finalizing Khloe's adoption and therefore, our plans to be sealed together as a family, pending this appeals process which could take several more months. Our other options were to take the risk of going ahead, knowing that any further appeals we would have to handle ourselves without the support of the State, or we could even cancel the adoption and have Khloe placed with another family. I was devastated, having to call Larry and tell him, trying to remain calm in front of the kids and our babysitter, and as I said, knowing I had to teach a room full of hopeful foster/adopt parents over the next 3 hours, I was silently praying for help and guidance. A short time later I got into the car for the drive into the DCFS office and as I started to turn on the radio I felt impressed to leave it off and to continue my prayers in behalf of this new situation with Khloe. Suddenly in the quiet of the car I realized the chorus of the hymn "Do What Is Right" was repeating over and over again in my head..."Do what is right, let the consequence follow; battle for freedom in spirit and might. And with stout heart look ye forth til tomorrow; God will protect you, then do what is right"...and I knew Khloe was to be our daughter, that things might take awhile to be legally finished but that we would be sealed together as an eternal family and that we needed to fight for this with all our might and look towards the future with confidence in God and His plan for us. The huge change in how I felt instantly was amazing and later that night, as I looked up the complete hymn with all it's verses, I knew that song and the experience I had just had about Khloe and our Heavenly Father's plan for her in our family would be an example that I would never forget. Now, on that night last week all this came back to me once again, but with a new and added meaning...God still has a special plan for Khloe and our family and because we fought that battle eleven years ago to be sealed as an eternal family, we can look forth with stout hearts to a tomorrow, a forever future, together. How much that knowledge helped me last Wednesday night, and continues to now, as much if not more so than all those years ago.
How grateful I am to know we have a loving Father in Heaven who knows each of us personally and who provides just what we need at precise moments in our lives. He has blessed Larry and I with 7 wonderful children, each with their own story of how they came to be in our family, and were meant to be our children. Some might say it was all coincidence, each of those 7 unique experiences, but Larry and I know it has always been our Heavenly Father guiding us through those times and how much joy we have in our lives because we listened to Him. I know that even now, when it seems that we are being asked to face something beyond what parents should have to, that God is with us, and once again I draw comfort from Him.
This coming Thursday is Khloe's first official follow-up since her heart failure diagnosis. It will be an all day exam and testing at Primary Childrens. It is also Kindahl's 14th birthday, then Friday is Khloe's 13th birthday. Saturday is another cheer competition for Kindahl and then the Jr/Sr Prom that night and Larry and I are chaperoning (we have promised to not bother Jamin and Kaitlin and their dates too much!). We are also looking forward to Larry's cousin Tom and his wife Sherry coming to stay for a couple of days this weekend while they pick up their daughter Amanda from BYU. While all of this may seem crazy and hectic in our lives right now I want you to know that it is also just plain fun and sometimes that is the best therapy around!
Last Wednesday evening about 9:30pm Khloe started having heart pains, the same type that she was having when we went into the ICU in March. It is a stabbing type pain that seems to circle within her heart, backing off to a dull ache and in the past has come and gone in about 5-10 minute episodes a few times a day, but Wednesday night it started being continuous on into Thursday morning. We spoke with the cardiology team several times from midnight on but because there were no other symptoms (shortness of breath, lightheadedness, etc) we did not go in to the hospital until Thursday afternoon when the drs became concerned that it was still happening. So off Khloe, Larry and I go to Primary's ER at a little after 4pm where they did another full work up on her heart...labs, ekg, Echo. Everything looked good, just one slight slip in her heart function on the Echo but they called it "borderline" and because everything else was still within normal parameters we got to go home at 10:30pm. Apparently she is having what is called "angina" or pain associated with less blood flow through the heart and while she has had it before, this time the worry was that it lasted so much longer (over 27 hours) than the past 5 to 10 minutes. All that can be done when this happens is Tylenol for the discomfort, unless other symptoms of distress are present and then we are now under orders to go straight to the ER if that occurs. Beside all the discomfort because of the pain and then being extremely worn out and tired because of lack of sleep, Khloe was fine after everything calmed down and after having Friday to recover was back to her "new normal" by Saturday. I, on the other hand, am still trying to get on top of being constantly tired but feeling too much stress to get any decent sleep; it goes with the territory I guess. :-) . But the humor for the week helps...this time for our trip to the hospital I took a moment to pack a bag with a couple of days worth of clothing and personal items in case we ended up staying again as the last two times I was not prepared and Larry had to bring things the next day. Well, Khloe, Larry and I decided that because I did this, we got to go home, so now we have decided that I need to take a packed suitcase along for each dr's visit just to make sure we don't have to stay!
I do want to share something with all of you that I was thinking about Wednesday night while sitting up watching over Khloe...many of you remember that when we adopted Khloe we had several delays in going to court to finalize her adoption because her birth father kept filing appeals to overturn the termination of his parental rights. Though there were no grounds to support his appeals, he had the right to file all the way to the Washington Supreme Court (a process of 4 levels of appeals), which he did, causing a little over a year of waiting for our family. The second time he filed an appeal, we had already scheduled the court date, followed by our temple sealing date because no birth parent in Washington had ever filed any more appeals after a first attempt, mainly because after that first attempt they had to finance the appeals process on their own instead of having a court appointed attorney. So, as I was preparing to drive in to teach a class to other prospective foster/adopt parents, I got a phone call from our very agitated and apologetic social worker telling me we had to cancel our plans for finalizing Khloe's adoption and therefore, our plans to be sealed together as a family, pending this appeals process which could take several more months. Our other options were to take the risk of going ahead, knowing that any further appeals we would have to handle ourselves without the support of the State, or we could even cancel the adoption and have Khloe placed with another family. I was devastated, having to call Larry and tell him, trying to remain calm in front of the kids and our babysitter, and as I said, knowing I had to teach a room full of hopeful foster/adopt parents over the next 3 hours, I was silently praying for help and guidance. A short time later I got into the car for the drive into the DCFS office and as I started to turn on the radio I felt impressed to leave it off and to continue my prayers in behalf of this new situation with Khloe. Suddenly in the quiet of the car I realized the chorus of the hymn "Do What Is Right" was repeating over and over again in my head..."Do what is right, let the consequence follow; battle for freedom in spirit and might. And with stout heart look ye forth til tomorrow; God will protect you, then do what is right"...and I knew Khloe was to be our daughter, that things might take awhile to be legally finished but that we would be sealed together as an eternal family and that we needed to fight for this with all our might and look towards the future with confidence in God and His plan for us. The huge change in how I felt instantly was amazing and later that night, as I looked up the complete hymn with all it's verses, I knew that song and the experience I had just had about Khloe and our Heavenly Father's plan for her in our family would be an example that I would never forget. Now, on that night last week all this came back to me once again, but with a new and added meaning...God still has a special plan for Khloe and our family and because we fought that battle eleven years ago to be sealed as an eternal family, we can look forth with stout hearts to a tomorrow, a forever future, together. How much that knowledge helped me last Wednesday night, and continues to now, as much if not more so than all those years ago.
How grateful I am to know we have a loving Father in Heaven who knows each of us personally and who provides just what we need at precise moments in our lives. He has blessed Larry and I with 7 wonderful children, each with their own story of how they came to be in our family, and were meant to be our children. Some might say it was all coincidence, each of those 7 unique experiences, but Larry and I know it has always been our Heavenly Father guiding us through those times and how much joy we have in our lives because we listened to Him. I know that even now, when it seems that we are being asked to face something beyond what parents should have to, that God is with us, and once again I draw comfort from Him.
This coming Thursday is Khloe's first official follow-up since her heart failure diagnosis. It will be an all day exam and testing at Primary Childrens. It is also Kindahl's 14th birthday, then Friday is Khloe's 13th birthday. Saturday is another cheer competition for Kindahl and then the Jr/Sr Prom that night and Larry and I are chaperoning (we have promised to not bother Jamin and Kaitlin and their dates too much!). We are also looking forward to Larry's cousin Tom and his wife Sherry coming to stay for a couple of days this weekend while they pick up their daughter Amanda from BYU. While all of this may seem crazy and hectic in our lives right now I want you to know that it is also just plain fun and sometimes that is the best therapy around!
Monday, April 6, 2009
Spring Vacation!
Good Afternoon Everyone! We are in the middle of a glorious Utah spring day, blue skies and temperatures in the mid 60's! A nice start to the kids spring break! I began the day with an early morning walk with Kimber and then later this morning we all took Jetta, our German Shepherd, down to a nearby field to run and play fetch. She wore herself out racing around all of us in the field and then running back and forth to the suburban where Khloe was sitting to watch all the fun. Now we are all home getting the house in order so we can play the rest of the week!
These past few days have been a lot of fun for our family. First we were able to visit with a group of good friends from Camas several times over the weekend; they came down to attend General Conference. Seeing them all after 3 years was a real treat; all of our kids had a blast catching up with their friends as did Larry and I. Khloe got to see them, also, which she enjoyed a great deal, even asking one of my friends to keep me talking one night so she could visit longer! On Friday night Jamin had his "Mr Syracuse" pageant. He had been nominated by the school's dance line and he in turn asked Khloe to be his escort. Jamin did a great job making up a Hip Hop routine for his talent, as well as all the activities during the week; he and Khloe even coordinated their dress clothes so they would match! Then that night, Khloe felt so special as Jamin knelt in front of her on stage and gave her a rose...it was pretty special for all of us watching, too! He did not win the title, but he sure is a winner in our family! On Saturday Kindahl had a cheer competition at the University of Utah and her team took first place! Kindahl was very excited as was Karissa since she is one of the coaches! Then since the men in our family were attending the Priesthood Session of Conference and traditionally go out to dinner afterwards, I took the girls out to dinner using the victory as a reason, though I really did not need an excuse to have a fun night out with all my daughters after the last month we have had! Finally, yesterday we all enjoyed a restful and uplifting day watching Conference from home. We were all together, even Troy our future son-in-law, except for Larry as it was his drill weekend, but he came home to a peaceful, happy family.
Through all this Khloe did very well. She is getting better at realizing how much activity she can do and monitored herself each day to plan ahead for things she wanted to do. For example, she knew we could visit with our friends from Camas on Friday morning and then that night had Jamin's show so she used walking to and from our next door neighbors house where the Camas friends would be gathered as her walking goal for the day and used her wheelchair for all the time she was at the show that night since she could not be sure how much standing/walking would be required of her. It was a good plan and throughout the day she was able to get information about how she does when being more active. She needed a nap about an hour after getting home from the visit and slept for almost 4 hours, then charted her blood pressure several times during the day and saw that it was up in the high 120's (if it reaches 130 we have to call the cardiology team). Right before going to bed that night it was 124/78, so now she knows that using her wheelchair in the evening helped it not go too high and planning a very quiet day on Saturday before using her wheelchair when we went out to dinner gave her the rest her body needed to recover from the day before and her blood pressures averaged in the low 100's. This information gathering has been good for the other kids, too, because they knew 120/80 was a good blood pressure and were wondering why we needed to be concerned with Khloe's in that range. It gave us the chance to talk more about how most peoples systems regulate their own pressures naturally, even with exercise, but that it is all the medicines that Khloe is taking that are regulating her system and the doctors are still watching to see if they have the right combination to support her the best.
So, all in all we had a great weekend with special activities, visits, and information gathering. And now we have a whole week ahead to schedule whatever we want to do..what could be better? :-)
These past few days have been a lot of fun for our family. First we were able to visit with a group of good friends from Camas several times over the weekend; they came down to attend General Conference. Seeing them all after 3 years was a real treat; all of our kids had a blast catching up with their friends as did Larry and I. Khloe got to see them, also, which she enjoyed a great deal, even asking one of my friends to keep me talking one night so she could visit longer! On Friday night Jamin had his "Mr Syracuse" pageant. He had been nominated by the school's dance line and he in turn asked Khloe to be his escort. Jamin did a great job making up a Hip Hop routine for his talent, as well as all the activities during the week; he and Khloe even coordinated their dress clothes so they would match! Then that night, Khloe felt so special as Jamin knelt in front of her on stage and gave her a rose...it was pretty special for all of us watching, too! He did not win the title, but he sure is a winner in our family! On Saturday Kindahl had a cheer competition at the University of Utah and her team took first place! Kindahl was very excited as was Karissa since she is one of the coaches! Then since the men in our family were attending the Priesthood Session of Conference and traditionally go out to dinner afterwards, I took the girls out to dinner using the victory as a reason, though I really did not need an excuse to have a fun night out with all my daughters after the last month we have had! Finally, yesterday we all enjoyed a restful and uplifting day watching Conference from home. We were all together, even Troy our future son-in-law, except for Larry as it was his drill weekend, but he came home to a peaceful, happy family.
Through all this Khloe did very well. She is getting better at realizing how much activity she can do and monitored herself each day to plan ahead for things she wanted to do. For example, she knew we could visit with our friends from Camas on Friday morning and then that night had Jamin's show so she used walking to and from our next door neighbors house where the Camas friends would be gathered as her walking goal for the day and used her wheelchair for all the time she was at the show that night since she could not be sure how much standing/walking would be required of her. It was a good plan and throughout the day she was able to get information about how she does when being more active. She needed a nap about an hour after getting home from the visit and slept for almost 4 hours, then charted her blood pressure several times during the day and saw that it was up in the high 120's (if it reaches 130 we have to call the cardiology team). Right before going to bed that night it was 124/78, so now she knows that using her wheelchair in the evening helped it not go too high and planning a very quiet day on Saturday before using her wheelchair when we went out to dinner gave her the rest her body needed to recover from the day before and her blood pressures averaged in the low 100's. This information gathering has been good for the other kids, too, because they knew 120/80 was a good blood pressure and were wondering why we needed to be concerned with Khloe's in that range. It gave us the chance to talk more about how most peoples systems regulate their own pressures naturally, even with exercise, but that it is all the medicines that Khloe is taking that are regulating her system and the doctors are still watching to see if they have the right combination to support her the best.
So, all in all we had a great weekend with special activities, visits, and information gathering. And now we have a whole week ahead to schedule whatever we want to do..what could be better? :-)
Wednesday, April 1, 2009
Tuesday, April 1st
Khloe said I should start this post with an April Fool's joke about her...something like "Guess what everyone? Khloe's hair has turned bright red because of all the medicines...now she looks like me!"...but then we knew you were all way too savvy to fall for that! :-)
So how about some Lewis Family humor instead? It may be a little off kilter, but those of you who know our family will forgive us! Khloe was able to go to mutual tonight for the first time, though she is still needing to use the wheelchair as being up and walking more than 5 minutes makes her blood pressure and heart rate go up. She also needs to have her travel oxygen with her in case she needs some for recovery after exertion and at dinner tonight Larry and I were reviewing with the kids how to care for the container. You see, this past Sunday Jamin had helped load the wheelchair and her oxygen in the suburban and had forgotten to secure the backpack/travel container and in the 1 mile drive to church it had fallen over (a big worry with compressed oxygen), but was fine. So after discussing what could have happened we got on a roll laughing about how fast the suburban could get to the church if the oxygen fell over and exploded...it would have to be pointed in the right direction...if it went straight up in the sky what were the odds it would come down in the parking lot...would everyone know the Lewis kids had arrived by the bright ball of flame behind them...etc, etc. But to reassure all of you, we did remind the kids of the correct way to handle the oxygen before they left and told them to make sure no one at church kicked the cannister...or pretended it was a football...or played "keep away" (because they might get blown away)...etc, etc!
Now to be serious (which is hard because I am still chuckling), Khloe is doing well, though she is continuing to feel some frustrations with her body being so tired all the time. As I mentioned before, she is up to standing and walking for about 5 minutes, but we notice that just that much activity causes her blood pressure to rise about 7-10 points. We were asked to get a blood pressure cuff so we could take her pressure randomly, keeping a record of activties and the effects on her system; we got a digital one so Khloe can do this herself. She is supposed to stay under 120 and while at rest she averages 97/60, but any activity raises it up to around 115/70 and some times has been in the 123 range. If she goes to 130 and over we have to call the cardiolgy team for decisions. This past Sunday we all went to church together for the first time in March and though she really enjoyed being there, she did start to feel tired at the end of sacrament meeting and thought of going home, but pushed through till after Young Women's. Her pressures and heart rate were stable after the three hours, but she was exhausted and was in bed asleep by shortly after 7:oopm and did not wake until after 9 Monday morning. Since then she has napped every day of her own volition and seems to do better at a regular daytime schedule. She is able to go up and down the stairs as long as she sits on the bench on the landing for at least one minute, but she and I really have to plan ahead for any thing she wants to do as the extra time needed to go up the stairs, or to fix her hair and change clothes, or to get in the car to go somewhere has to always be figured in. In spite of all this, she is happy and her spirits are high. She has her "home hospital" teacher from school coming tomorrow for the first time and is looking forward to having some school work to occupy her time ( yes fellow parents, read that part to your children!).
I want to thank you all for the comments and messages you have left on the blog or sent to my email. I read them to Khloe and it makes her feel much more connected to everyone. A big "thank you" to Kimberlie's teacher Miss Thomas who understood that when Kimber came to school last week with her arm wrapped up in bandages, that though she was pretending to have an injury, it was her way of dealing with some of what she has seen Khloe having to do and having her teacher validate that made her ( and I) feel supported and cared for.
So how about some Lewis Family humor instead? It may be a little off kilter, but those of you who know our family will forgive us! Khloe was able to go to mutual tonight for the first time, though she is still needing to use the wheelchair as being up and walking more than 5 minutes makes her blood pressure and heart rate go up. She also needs to have her travel oxygen with her in case she needs some for recovery after exertion and at dinner tonight Larry and I were reviewing with the kids how to care for the container. You see, this past Sunday Jamin had helped load the wheelchair and her oxygen in the suburban and had forgotten to secure the backpack/travel container and in the 1 mile drive to church it had fallen over (a big worry with compressed oxygen), but was fine. So after discussing what could have happened we got on a roll laughing about how fast the suburban could get to the church if the oxygen fell over and exploded...it would have to be pointed in the right direction...if it went straight up in the sky what were the odds it would come down in the parking lot...would everyone know the Lewis kids had arrived by the bright ball of flame behind them...etc, etc. But to reassure all of you, we did remind the kids of the correct way to handle the oxygen before they left and told them to make sure no one at church kicked the cannister...or pretended it was a football...or played "keep away" (because they might get blown away)...etc, etc!
Now to be serious (which is hard because I am still chuckling), Khloe is doing well, though she is continuing to feel some frustrations with her body being so tired all the time. As I mentioned before, she is up to standing and walking for about 5 minutes, but we notice that just that much activity causes her blood pressure to rise about 7-10 points. We were asked to get a blood pressure cuff so we could take her pressure randomly, keeping a record of activties and the effects on her system; we got a digital one so Khloe can do this herself. She is supposed to stay under 120 and while at rest she averages 97/60, but any activity raises it up to around 115/70 and some times has been in the 123 range. If she goes to 130 and over we have to call the cardiolgy team for decisions. This past Sunday we all went to church together for the first time in March and though she really enjoyed being there, she did start to feel tired at the end of sacrament meeting and thought of going home, but pushed through till after Young Women's. Her pressures and heart rate were stable after the three hours, but she was exhausted and was in bed asleep by shortly after 7:oopm and did not wake until after 9 Monday morning. Since then she has napped every day of her own volition and seems to do better at a regular daytime schedule. She is able to go up and down the stairs as long as she sits on the bench on the landing for at least one minute, but she and I really have to plan ahead for any thing she wants to do as the extra time needed to go up the stairs, or to fix her hair and change clothes, or to get in the car to go somewhere has to always be figured in. In spite of all this, she is happy and her spirits are high. She has her "home hospital" teacher from school coming tomorrow for the first time and is looking forward to having some school work to occupy her time ( yes fellow parents, read that part to your children!).
I want to thank you all for the comments and messages you have left on the blog or sent to my email. I read them to Khloe and it makes her feel much more connected to everyone. A big "thank you" to Kimberlie's teacher Miss Thomas who understood that when Kimber came to school last week with her arm wrapped up in bandages, that though she was pretending to have an injury, it was her way of dealing with some of what she has seen Khloe having to do and having her teacher validate that made her ( and I) feel supported and cared for.
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