Thursday, June 18th, 2009

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!!!!!

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.