Good Morning! And yes it is a good morning!
Khloe and I got home from PCMC Tuesday night; she was feeling wonderfully well mentally and ok physically...the mental "wonderfully well" really made the difference about being able to leave. :-)
Today we go back in at 11:00am for an outpatient procedure to replace her GJ tube again! This time it has been lodged in her esophagus since her vomiting on Monday, but the drs did not want to correct it until they were sure her tummy could handle it once more. So since then she has been on a very restricted diet, not wanting any food to get caught on the tube when she was swallowing and cause her to choke and needing to give her tummy only very bland foods as it was healing. As you can imagine she is really looking forward to eating something with substance and flavor!!!! After the tube is replaced we go see her rheumatologist to check in on her scleroderma and muscle enzymes; we are hoping for good news.
Today is also the funeral services for Larry's father up in Chatteroy, Washington, just north of Spokane. Khloe's drs had told us last week that they did not feel she would have her strength and/or stamina back to handle the trip up there so we have known that the children and I would not be able to attend. It is hard to not be there for Larry and Mom/Grandma, and even harder to think about not being there for Dad/Grandpa; our thoughts will be with them through out the day. This week is also Zion's camp for Jamin and Jonah; we encouraged them to go as originally planned when we knew we would not be able to go to the funeral. They both spoke to me about Grandpa before they left and I know today will be a very tender day for them, too. I so appreciate the priesthood holders who will be supporting them while they are at camp and I know Larry feels the same way.
Because the men in our family are gone and we women all feel the need to have some fun time together, we are having a "girls day out" tomorrow and going shopping, out to eat and maybe catch a movie. I'm sure you can all understand the need we have to not be irresponsible, but to put off responsibilities for a short time. Khloe gets to choose the restaurant after her time off of yummy food and is putting a great deal of thought into it! Kimber is thrilled to go shopping with the big girls; she is by far the most clothes conscience at her age than any of the other girls were! Kindahl and Kailtin are also looking forward to the shopping, and Karissa and I mostly to time spent together with out having to make big-deal decisions! :-) Karissa has been a HUGE help to me this last week and I was and continue to be so amazed and yes, proud, of the job she has done in being the parent with both Larry and I gone. She only text me once last Sunday night saying she was "ready to stop being the mommy now"; she handled so many situations on her own in exactly the ways we would have wanted them done and without any guidance! She is a remarkable young woman!
But there are questions and then decisions facing us again soon; can Khloe go to Girl's Camp next week? what driving options do we have to get Kindahl back and forth from camp to her recital performances Tuesday and Wednesday? where can Jamin find full-time employment now that he has graduated? when can Jonah get in the last of his driving hours before getting his license? will Larry's mom be coming home with him to stay for awhile? can we go to Bear Lake as planned and can Larry be with us after the time he has already had off? will we as a family be able to participate in the Scleroderma Walk/Run fund raiser at Syracuse Days on June 27th as planned with Khloe joining in the walking? With just writing down these down, and recognizing that there are many more decisions to make each day, I am now EVEN HAPPIER we are taking tomorrow off!!!!!
Thursday, June 18, 2009
Monday, June 15, 2009
June 15, 2009
So much as happened since I last posted; I KNOW I am really bad about keeping this updated as many of you have gently reminded me!
But, as my excuse is always the same....life is busy....this post, too, will be brief.
Khloe's appt on May 21st went very well. The meds she is on for her heart showed they were supporting it in normal ranges...yahoo! All her limitations were lifted for 2 months so it could be determined if her heart could maintain the normal ranges with normal, 13 yr old girl activities. So from that date until June 8th she did rally well, only tiring out more than a healthy young girl would, but no other consequences. The week before June 8th I was diagnosed with the Flu A virus and obviously quarantined from Khloe, but she started having symptoms that Monday and then on Tuesday her cardiologist asked us to bring her in for an echo as she was starting to have more irregular beat patterns because of feeling ill. As we were getting ready to leave Khloe passed out, came to, then passed out again (much longer version available when I have time to explain). We had to call 911 and they transported us to PCMC where we have been ever since. Khloe's heart was not causing all this, the flu and a Scleroderma flare-up have been determined to be the culprits, but they caused her heart to be in distress. Now, six and a half days later, her heart is back under control, the flu has run it's course and the Scleroderma is beginning to clam down the swelling in her muscles, yet she has developed some vomiting in the last two days that is currently unexplained and keeps causing her GJ feeding tube to come dislodged; it has already been replaced yesterday and now will need to be again after the vomiting stops. We, Khloe and I, get to go home as soon as all this new stuff is resolved, we hope by tomorrow.
Meanwhile, during this time here with Khloe, we also received the sad news that Larry's father passed away on Wednesday the 10th of June. Larry was very torn between being here with Khloe and needing to be with his Mom; he flew out on Thursday morning to Washington after being as reassured as possible by me, and Khloe's drs. He will be with his mom through this next Thursday the 18th which is the day of the funeral in Spokane. We, Khloe and I, hear from him at least three times a day, and the kids at home do, too.
At Khloe's last appt on May 21st she was scheduled for a Stress MRI on July 15th. The plan was for her to do normal activities until then, then do the test which requires the drs to give her medicine that would cause her heart to go into distress, then do the MRI to determine the extent of the damage caused by the Scleroderma. Now the drs are not sure we will stay on that time-line feeling that her heart may need more recovery time after this last bout. I will let you all know when we do. For now I have to end this and get back to her room.
Thanks to everyone who is helping us out, especially with Larry and I both gone from home.
But, as my excuse is always the same....life is busy....this post, too, will be brief.
Khloe's appt on May 21st went very well. The meds she is on for her heart showed they were supporting it in normal ranges...yahoo! All her limitations were lifted for 2 months so it could be determined if her heart could maintain the normal ranges with normal, 13 yr old girl activities. So from that date until June 8th she did rally well, only tiring out more than a healthy young girl would, but no other consequences. The week before June 8th I was diagnosed with the Flu A virus and obviously quarantined from Khloe, but she started having symptoms that Monday and then on Tuesday her cardiologist asked us to bring her in for an echo as she was starting to have more irregular beat patterns because of feeling ill. As we were getting ready to leave Khloe passed out, came to, then passed out again (much longer version available when I have time to explain). We had to call 911 and they transported us to PCMC where we have been ever since. Khloe's heart was not causing all this, the flu and a Scleroderma flare-up have been determined to be the culprits, but they caused her heart to be in distress. Now, six and a half days later, her heart is back under control, the flu has run it's course and the Scleroderma is beginning to clam down the swelling in her muscles, yet she has developed some vomiting in the last two days that is currently unexplained and keeps causing her GJ feeding tube to come dislodged; it has already been replaced yesterday and now will need to be again after the vomiting stops. We, Khloe and I, get to go home as soon as all this new stuff is resolved, we hope by tomorrow.
Meanwhile, during this time here with Khloe, we also received the sad news that Larry's father passed away on Wednesday the 10th of June. Larry was very torn between being here with Khloe and needing to be with his Mom; he flew out on Thursday morning to Washington after being as reassured as possible by me, and Khloe's drs. He will be with his mom through this next Thursday the 18th which is the day of the funeral in Spokane. We, Khloe and I, hear from him at least three times a day, and the kids at home do, too.
At Khloe's last appt on May 21st she was scheduled for a Stress MRI on July 15th. The plan was for her to do normal activities until then, then do the test which requires the drs to give her medicine that would cause her heart to go into distress, then do the MRI to determine the extent of the damage caused by the Scleroderma. Now the drs are not sure we will stay on that time-line feeling that her heart may need more recovery time after this last bout. I will let you all know when we do. For now I have to end this and get back to her room.
Thanks to everyone who is helping us out, especially with Larry and I both gone from home.
Sunday, May 17, 2009
So what do you do when you can't sleep....?
I envision the following scenario....the television reporter, amidst all the cheering and applause says, "So, Kathi, you have succeeded in creating a happy, peaceful, restorative Sabbath day, all your family is gently at rest, and your week ahead is planned and coordinated; what will you do next?", and my answer "Go to Disneyland!", then his answer "Yeah, right! You got yourself mixed up with the Taylor's! Try going to sleep instead!" So when I can finally get my mind to settle down for the night I will imagine what a great time our friends are having and that will give me a wonderful start to some happy dreams!
We have had a nice weekend, starting with attending the Renaissance Fair on Saturday with the Hope Kids foundation. This is a group that Khloe, and us as her family, became involved with during the last week of her hospital stay. It is an organization specifically for children with life-threatening illnesses and their families and provides ongoing events and activities as well as a special support community. The fair was outside and it was a gorgeous day! We watched full-contact jousting (even Jamin winced at some of the hits), listened to some great bagpipe/flute/strings music, and saw a myriad of costumes including Snow White, a Spartan and even a Trekkie! We got an added bonus for the day by being able to visit with our friends the Beckstrom's as they were arriving and we were headed home....great timing! Among other things, Kaitlin and Kindahl left with henna tattoos, Khloe with a "Harry Potter" type magic wand and Kimber with a flute and pictures of herself riding a camel! Larry took us all out for an early dinner and then Kaitlin and I got to go watch Jamin perform in the high school's dance classes recital, of which he did a fabulous job! This morning I woke up to another beautiful day and decided to take Kimber and Khloe on a walk. Kimber pushed her baby (current one is a stuffed polar bear!) in the stroller and I pushed Khloe in the wheelchair. What started out as a nice little stroll turned into a 4 mile walk as we were enjoying ourselves so much! Then we got to go to church and fill our spiritual reservoirs some more and then had a fun dinner with wonderful friends over to share it with us. All in all a happy, peaceful, restorative (now you know where that reporter I mentioned before got his line!) weekend.
Coming up we have a busy week with Kimber's kindergarten testing and year-end program, a mock disaster drill and recall for CERT, and Khloe's and my all day visit to Primary's on Thursday. The weekend is busy, too, with Jamin and I down at Snow College for his football "audition" on Saturday (wish him luck!), and our family speaking in church on Sunday (for all of you who will be gone for Memorial Day we will let you know if you missed anything!).
I will end tonight with a thought to ponder...for those of you with young children, looking forward to the day when one of them is finally old enough to babysit the younger ones and envying those of us already there, Larry and I discovered something of importance Friday night that we want to share with you...after all that time of waiting for them to get older and be able to babysit, once they can do that for you, take advantage and enjoy it as much as possible because there will come a day when, because they are now even older, they will have jobs and social lives that take them away and therefor are unable to babysit for you anymore!!!! So here's to our children becoming the responsible, contributing members of society we are raising them to be, and to us for not only letting them go, but encouraging them to, even when it means we don't get to see that movie we talked about all week!! :-)
We have had a nice weekend, starting with attending the Renaissance Fair on Saturday with the Hope Kids foundation. This is a group that Khloe, and us as her family, became involved with during the last week of her hospital stay. It is an organization specifically for children with life-threatening illnesses and their families and provides ongoing events and activities as well as a special support community. The fair was outside and it was a gorgeous day! We watched full-contact jousting (even Jamin winced at some of the hits), listened to some great bagpipe/flute/strings music, and saw a myriad of costumes including Snow White, a Spartan and even a Trekkie! We got an added bonus for the day by being able to visit with our friends the Beckstrom's as they were arriving and we were headed home....great timing! Among other things, Kaitlin and Kindahl left with henna tattoos, Khloe with a "Harry Potter" type magic wand and Kimber with a flute and pictures of herself riding a camel! Larry took us all out for an early dinner and then Kaitlin and I got to go watch Jamin perform in the high school's dance classes recital, of which he did a fabulous job! This morning I woke up to another beautiful day and decided to take Kimber and Khloe on a walk. Kimber pushed her baby (current one is a stuffed polar bear!) in the stroller and I pushed Khloe in the wheelchair. What started out as a nice little stroll turned into a 4 mile walk as we were enjoying ourselves so much! Then we got to go to church and fill our spiritual reservoirs some more and then had a fun dinner with wonderful friends over to share it with us. All in all a happy, peaceful, restorative (now you know where that reporter I mentioned before got his line!) weekend.
Coming up we have a busy week with Kimber's kindergarten testing and year-end program, a mock disaster drill and recall for CERT, and Khloe's and my all day visit to Primary's on Thursday. The weekend is busy, too, with Jamin and I down at Snow College for his football "audition" on Saturday (wish him luck!), and our family speaking in church on Sunday (for all of you who will be gone for Memorial Day we will let you know if you missed anything!).
I will end tonight with a thought to ponder...for those of you with young children, looking forward to the day when one of them is finally old enough to babysit the younger ones and envying those of us already there, Larry and I discovered something of importance Friday night that we want to share with you...after all that time of waiting for them to get older and be able to babysit, once they can do that for you, take advantage and enjoy it as much as possible because there will come a day when, because they are now even older, they will have jobs and social lives that take them away and therefor are unable to babysit for you anymore!!!! So here's to our children becoming the responsible, contributing members of society we are raising them to be, and to us for not only letting them go, but encouraging them to, even when it means we don't get to see that movie we talked about all week!! :-)
Monday, May 11, 2009
I'm back!
Thanks to all of you who reminded me that I have not updated our blog for a couple of weeks! Isn't there a saying like "life is what happens while you are living it?" ...well we have certainly been living life to it's fullest lately!
Since I last wrote Jamin's graduating needs have gone into overdrive (pictures, announcements, college visits, etc); in less than a month he will graduate as one of the top students and athletes in his class...woohoo! He is also a terrific young man in his strength of character and values and we are so pleased with the person he has become. What mom wouldn't absolutely love having her son open her car door for her even when she is the one who will be driving or take her arm to help her over a rough patch of ground or check with her each morning to see what he could do to help her day, among so many other thoughtful things he does? And what dad wouldn't enjoy having his son work on his car maintenance without being told, like reading the same hot rod magazine, and laugh hysterically together at the same ridiculous commercial that they play over and over again? Jamin is a wonderful son, great big brother and will be a remarkable adult.
Kaitlin was chosen to be SBO (student body officers) over Student Relations for this next school year (her senior year!) and was also accepted on the Yearbook staff. I was able to help her just a bit on her portfolio she had to submit for SBO and was amazed at her creativity and production skills. So this means that next year she will be involved in SBO, yearbook, the Standard Examiner as a teen reporter and act as one of sixteen high school representatives on the district's Superintendents Council...along with working and anything else she can manage to fit into her schedule! She also received the Leadership Award through the Teachers of Tomorrow program at Weber State University last week and she enjoyed having Larry act as her escort for the night.
Jonah started his first "official" job in April and now has finished his training time and is busy working 3-4 days a week. Larry and I had the chance to visit with his boss one night at a social event and he said Jonah was a great employee; parents like hearing that! I got to go with him last week to set up his checking/saving account with his own debit card; that makes four of our kids handling their own money now! He gets to start the balancing act of football conditioning, work, friends and family this summer (not necessarily in that order!), but I am sure he will rise to the challenge. It is neat to see your kids learn more about managing themselves and grow with added responsibilities.
Kimberlie is working hard learning her part for the Kindergarten end-of-the-year program. Can you believe she volunteered for a speaking part and has it memorized already?!! She also got to go to the Clark Planetarium last week on her first "bus ride" field trip; she was nervous about the bus not having seat belts :-) but I also think the bus ride was the best part of the adventure when it was done! I, surprisingly, had a hard time letting her go at the last minute and was lurking around the corner of the classroom listening to the instructions to the chaperones and keeping my eye on her! After all my other children having gone on sssooo many field trips through out the years why was it suddenly difficult for me to let her go??? I don't know if it was the fact that she is the youngest or if it was all mixed up with feeling so protective these days of all my kids or what, but I need to say "thank you" to Jenny, a dear friend and neighbor, for understanding my wacko feelings and taking it upon herself to arrange for Kimberlie to be with her on the trip!
Several more "thank yous" first to my sweet husband, Larry, for taking time off from work and making me go to Women's Conference as planned! Prior to Khloe's hospitalization, I had arranged with Larry to be home in the mornings the two days of Women's Conference to get Kimber off to school, with the older kids being home with her in the afternoons until he was home at night, while Karissa and I stayed down in Provo for those days. In February I was really looking forward to attending with her for the first time and hoping to start a new mom/daughter tradition of a Women's Conference retreat, with the other girls joining in as they became adults. Of course all that changed with Khloe's health and I was going to cancel out for this year, when Larry insisted that I needed to go ahead with our plans, especially now with so much on my plate. We compromised at my attending, but not staying overnight and just driving back and forth each day...benefit of living in Utah! Thank you to Myrna and Susan for saving us seats in the Marriott while we searched for parking each day and for sharing their experiences of the classes they took! The conference was great, and being with Karissa and sharing some classes with her was fabulous! She and I were also able to connect with friends from Washington that now live in Utah and all of us where able to eat lunch on Thursday at the Gartz's restaurant "Dew", next to BYU campus...YUMMY food and highly recommended...thank you Simi and Andy! Then the reason I was supposed to attend became clear in a class Friday afternoon I had previously looked right past in the brochure...it was tittled "Difficult but Precious: Our Last Days with Those We Love". This was a class meant just for me and it was the most uplifting, strengthening, and faith building class I could have taken. I learned a great deal about this journey and I was able to add a lot to my reservoir to prepare for those times I need to draw from it. Most importantly I was able to see the possible blessings and growth that could be ours with a humble and loving approach vs. an angry, despairing attitude. A special "tender mercy" was meeting and being encouraged by a special daughter courageously supporting her mother through her final mission here on earth...Heidi, your instant friendship and kind words of understanding made the message of the class complete and my thoughts and prayers are with you, too. I drove home Friday afternoon with a whopping headache from all the emotions of the conference, but even that was welcome as I thought over all I had gained those two days, so my final thanks goes to my Father in Heaven for inspiring so many people to provide just what I needed in giving of their time, offering their support, passing on what they have learned, and sharing their experiences.
This update would not be complete without mentioning the wonderful two nights we had first with Kindahl and then a week later with Khloe as they each received their Patriarchal Blessings. I can share that Larry and I are so blessed to have these special daughters in our family, each with her own divine mission to fulfil in her own unique way! We are both humbled to realize that we were given the opportunity to be their parents and yet thrilled at the same time to understand their tremendous potentials! You go, girls!!!!!!!!
Now for our medical update: Khloe has had some hard days these past couple of weeks with blood pressures entering that 130 zone several times and having more bouts with breathlessness and just feeling worn out. Her cardiologist has been watching all this closely, increasing one of her meds and scheduling some more tests for our next appointment with her on the 21st. She woke up with a slight cold on the 4th and I had to check with the cardiologist again for what medication she could take, finding out she can only have a straight antihistamine because any decongestant would increase her heart rate. So she had a few days of being pretty congested which didn't work well with the breathing problem. A little funny note, when I called about the cold it took me a minute to understand why the doctor seemed more intense in gathering the information from me...she thought Khloe might have picked up the Swine Flu virus and it never even occurred to me that it would sound like that when I first started to relay her symptoms! Moving her bed back upstairs has had mixed results; she likes being with her sibs and having a door to close for privacy and a feeling of protection at night, but going up and down the stairs more often, even with resting on the bench at the landing to regain her breath, has been part of the cause for her higher pressures and fatigue. We are working on the possibility of adding a room and bath edition downstairs which was recommended by the doctors because of Khloe's disability status with physical limitations that will progress, but it is a big (make that huge) step with today's home equity decreases. I hate (make that SUPREMELY DISLIKE as we teach our kids that to hate is to be totally negative) having to balance a decision that would be the best support for one of my children with a financial position!!!! However, if we do proceed with the new room we have some great friends and neighbors who have volunteered their services in different construction related areas that can help offset the costs so for them I am truly grateful!!!!!
Speaking of friends, I need to alert my neighbors that in the near future the Syracuse Emergency Response Teams, ie: the fire and paramedic departments, will be visiting with us to familiarize themselves with Khloe, our house, her medical equipment, etc, in case they ever need to respond to a call from our home. Because we know that Kimberlie is scared of the sirens we asked if they could show her how they work when they come to visit and they said she could even turn it on for a trial if she would like. So now we want to prepare all of you that if you hear sirens and look out your windows to see emergency vehicles in front of our house, don't get worried unless you actually see Khloe leaving with them!!! :-) As there are more than one shift in each department, this scenario may repeat itself several times so I will try my best to inform you before they come. We have been joking about using their loud speaker system to announce "this is a test of the Syracuse Emergency Response system. This is ONLY a test" so you wont be concerned but I can't promise that will happen! :-)
Here's to looking forward to a good week, with great weather and days going according to plan with no surprises; negative ones that is, positive ones are always welcome!
Since I last wrote Jamin's graduating needs have gone into overdrive (pictures, announcements, college visits, etc); in less than a month he will graduate as one of the top students and athletes in his class...woohoo! He is also a terrific young man in his strength of character and values and we are so pleased with the person he has become. What mom wouldn't absolutely love having her son open her car door for her even when she is the one who will be driving or take her arm to help her over a rough patch of ground or check with her each morning to see what he could do to help her day, among so many other thoughtful things he does? And what dad wouldn't enjoy having his son work on his car maintenance without being told, like reading the same hot rod magazine, and laugh hysterically together at the same ridiculous commercial that they play over and over again? Jamin is a wonderful son, great big brother and will be a remarkable adult.
Kaitlin was chosen to be SBO (student body officers) over Student Relations for this next school year (her senior year!) and was also accepted on the Yearbook staff. I was able to help her just a bit on her portfolio she had to submit for SBO and was amazed at her creativity and production skills. So this means that next year she will be involved in SBO, yearbook, the Standard Examiner as a teen reporter and act as one of sixteen high school representatives on the district's Superintendents Council...along with working and anything else she can manage to fit into her schedule! She also received the Leadership Award through the Teachers of Tomorrow program at Weber State University last week and she enjoyed having Larry act as her escort for the night.
Jonah started his first "official" job in April and now has finished his training time and is busy working 3-4 days a week. Larry and I had the chance to visit with his boss one night at a social event and he said Jonah was a great employee; parents like hearing that! I got to go with him last week to set up his checking/saving account with his own debit card; that makes four of our kids handling their own money now! He gets to start the balancing act of football conditioning, work, friends and family this summer (not necessarily in that order!), but I am sure he will rise to the challenge. It is neat to see your kids learn more about managing themselves and grow with added responsibilities.
Kimberlie is working hard learning her part for the Kindergarten end-of-the-year program. Can you believe she volunteered for a speaking part and has it memorized already?!! She also got to go to the Clark Planetarium last week on her first "bus ride" field trip; she was nervous about the bus not having seat belts :-) but I also think the bus ride was the best part of the adventure when it was done! I, surprisingly, had a hard time letting her go at the last minute and was lurking around the corner of the classroom listening to the instructions to the chaperones and keeping my eye on her! After all my other children having gone on sssooo many field trips through out the years why was it suddenly difficult for me to let her go??? I don't know if it was the fact that she is the youngest or if it was all mixed up with feeling so protective these days of all my kids or what, but I need to say "thank you" to Jenny, a dear friend and neighbor, for understanding my wacko feelings and taking it upon herself to arrange for Kimberlie to be with her on the trip!
Several more "thank yous" first to my sweet husband, Larry, for taking time off from work and making me go to Women's Conference as planned! Prior to Khloe's hospitalization, I had arranged with Larry to be home in the mornings the two days of Women's Conference to get Kimber off to school, with the older kids being home with her in the afternoons until he was home at night, while Karissa and I stayed down in Provo for those days. In February I was really looking forward to attending with her for the first time and hoping to start a new mom/daughter tradition of a Women's Conference retreat, with the other girls joining in as they became adults. Of course all that changed with Khloe's health and I was going to cancel out for this year, when Larry insisted that I needed to go ahead with our plans, especially now with so much on my plate. We compromised at my attending, but not staying overnight and just driving back and forth each day...benefit of living in Utah! Thank you to Myrna and Susan for saving us seats in the Marriott while we searched for parking each day and for sharing their experiences of the classes they took! The conference was great, and being with Karissa and sharing some classes with her was fabulous! She and I were also able to connect with friends from Washington that now live in Utah and all of us where able to eat lunch on Thursday at the Gartz's restaurant "Dew", next to BYU campus...YUMMY food and highly recommended...thank you Simi and Andy! Then the reason I was supposed to attend became clear in a class Friday afternoon I had previously looked right past in the brochure...it was tittled "Difficult but Precious: Our Last Days with Those We Love". This was a class meant just for me and it was the most uplifting, strengthening, and faith building class I could have taken. I learned a great deal about this journey and I was able to add a lot to my reservoir to prepare for those times I need to draw from it. Most importantly I was able to see the possible blessings and growth that could be ours with a humble and loving approach vs. an angry, despairing attitude. A special "tender mercy" was meeting and being encouraged by a special daughter courageously supporting her mother through her final mission here on earth...Heidi, your instant friendship and kind words of understanding made the message of the class complete and my thoughts and prayers are with you, too. I drove home Friday afternoon with a whopping headache from all the emotions of the conference, but even that was welcome as I thought over all I had gained those two days, so my final thanks goes to my Father in Heaven for inspiring so many people to provide just what I needed in giving of their time, offering their support, passing on what they have learned, and sharing their experiences.
This update would not be complete without mentioning the wonderful two nights we had first with Kindahl and then a week later with Khloe as they each received their Patriarchal Blessings. I can share that Larry and I are so blessed to have these special daughters in our family, each with her own divine mission to fulfil in her own unique way! We are both humbled to realize that we were given the opportunity to be their parents and yet thrilled at the same time to understand their tremendous potentials! You go, girls!!!!!!!!
Now for our medical update: Khloe has had some hard days these past couple of weeks with blood pressures entering that 130 zone several times and having more bouts with breathlessness and just feeling worn out. Her cardiologist has been watching all this closely, increasing one of her meds and scheduling some more tests for our next appointment with her on the 21st. She woke up with a slight cold on the 4th and I had to check with the cardiologist again for what medication she could take, finding out she can only have a straight antihistamine because any decongestant would increase her heart rate. So she had a few days of being pretty congested which didn't work well with the breathing problem. A little funny note, when I called about the cold it took me a minute to understand why the doctor seemed more intense in gathering the information from me...she thought Khloe might have picked up the Swine Flu virus and it never even occurred to me that it would sound like that when I first started to relay her symptoms! Moving her bed back upstairs has had mixed results; she likes being with her sibs and having a door to close for privacy and a feeling of protection at night, but going up and down the stairs more often, even with resting on the bench at the landing to regain her breath, has been part of the cause for her higher pressures and fatigue. We are working on the possibility of adding a room and bath edition downstairs which was recommended by the doctors because of Khloe's disability status with physical limitations that will progress, but it is a big (make that huge) step with today's home equity decreases. I hate (make that SUPREMELY DISLIKE as we teach our kids that to hate is to be totally negative) having to balance a decision that would be the best support for one of my children with a financial position!!!! However, if we do proceed with the new room we have some great friends and neighbors who have volunteered their services in different construction related areas that can help offset the costs so for them I am truly grateful!!!!!
Speaking of friends, I need to alert my neighbors that in the near future the Syracuse Emergency Response Teams, ie: the fire and paramedic departments, will be visiting with us to familiarize themselves with Khloe, our house, her medical equipment, etc, in case they ever need to respond to a call from our home. Because we know that Kimberlie is scared of the sirens we asked if they could show her how they work when they come to visit and they said she could even turn it on for a trial if she would like. So now we want to prepare all of you that if you hear sirens and look out your windows to see emergency vehicles in front of our house, don't get worried unless you actually see Khloe leaving with them!!! :-) As there are more than one shift in each department, this scenario may repeat itself several times so I will try my best to inform you before they come. We have been joking about using their loud speaker system to announce "this is a test of the Syracuse Emergency Response system. This is ONLY a test" so you wont be concerned but I can't promise that will happen! :-)
Here's to looking forward to a good week, with great weather and days going according to plan with no surprises; negative ones that is, positive ones are always welcome!
Monday, April 20, 2009
Birthday recovery week!
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!!!!!
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!!!!!
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!
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