3/18/14 Mandy’s trophy: “Super Sibs” sent this to her several months ago and I decided to hang onto it for her birthday. She was so excited it was personalized for her: Amanda, For your strength, courage and love, YOU are a SuperSib! Pretty neat program! Happy 8th birthday, sweetie! Colorado trip: the kids and I went to visit my family in Ft. Morgan last Thursday-Saturday. We swung through Sidney and got to meet an internet-friend that has a 4-yr-old granddaughter with NF and optic gliomas—it was so good to meet in person! We celebrated Mandy’s birthday and got to spend time with family. Visiting with Grandma Florence was a highlight. She’s growing frailer and a little more confused. The tolls of the stroke and hip fracture, and then recent arm fracture have taken their toll on her. But, she’s still as sweet and loving as ever. So glad we made the trip to see her. Other family has visited us in North Platte, but obviously, she can’t travel. This has been our 2nd trip to CO since Ian’s diagnosis in June. The only down side was that the new Kia refused to start during our visit. It had a recalled part within the ignition system and was towed about an hour away to the nearest Kia dealership. The next day, my parents picked it up for us. Thankfully, none of this cost us anything, but it was stressful nonetheless. Guess even new things break sometimes… :-) very grateful for God’s timing though! Chemo: Ian and I left for Kearney just 14 hours after arriving back in North Platte. Chemo went smoothly. The only issue was I wasn’t quick enough and forgot about collecting Ian’s first urine that morning. He has “stage fright” when not in a familiar bathroom, so we pumped him full of milk and Gatorade. They also hung a small bag of fluids and it didn’t take too long to get a good sample. He wasn’t dehydrated, but just will hold it until he can’t anymore. 2 weeks ago, his urine protein was high and it was again this week. Also, there was a trace amount of blood in his urine, but the Omaha docs are not too concerned at this point. This is the first time he’s had any issues with his blood/urine tests. As always, his blood counts all look great. The chemo he is on is not super aggressive (just spread over a really long time), so it frequently doesn’t affect the immune system so much. Affecting kidneys though, is something that is a possibility. Obviously, this will continued to be monitored. On the way home, he was talking and interacting and I saw how much less stressful it is for him to have chemo in Kearney than Omaha. It’s a 2 night trip to Omaha and only 1 to Kearney. St. Louis: We leave in 6 days for our next trip! Jas and Ian have appointments on the 26th-28th. Jason has an MRI of his arm to look at some sizeable fibroids that will need to be removed on our visit in June. Ian also has his usual MRI and at the same time he’s under anesthesia for that, he gets his hormone implant!! We received final word on that yesterday. It’s taken 3 months to get to this point and boy, are we ready! Our 4 year old is turning into a teenager before our eyes. Poor kid… on top of the crazy growth spurt, he’s now he’s developing acne and has “peach fuzz” on his upper lip. This implant will go under his skin and will stop the progression of puberty by basically putting him into “menopause” (with female hormones) and will need replaced once a year until he’s 10-12. (As a review: the optic tumors sit right next to the pituitary and hypothalamus. They are interfering with their normal function and making his body go into early puberty). Amanda will be staying in North Platte and Ruth will be staying here—thank you!! Vision: It seems to have stabilized. For a while, it was getting better, but it all depends on the day too. He’s not back to the point he was when we started chemo, but improved over the darkest days in September and October. One eye is “floating” to the side and not tracking with the other. This is due to the tumors affecting the muscles controlling the eye. After chemo is done (whenever that will be), he’ll most likely need surgery to correct those muscles, which will also increase his vision. St. Louis is the place to be—so glad to be in such competent and advanced medicine. Rental: It’s been shown 3 times and applications are trickling in slowly. The phone, however, is flooded. The last 2 days, there have been 27 phone calls. I don’t usually answer, but let the machine explain about the rental and how to get an application. No appointment for a viewing until we have references checked out. Please pray we get this rented quickly. It’s so worth it to have this rental—we hope that it will be a place we can help older parents or even for Ian when he gets ready to leave the house. I never dreamed we’d someday own 2 houses, but thanks to my folks who helped all of that happen 3 years ago. I now have no idea how we’d be dealing with all of Ian’s sleeping issues without the extra room in the new house. Service dog: We’ve been asked if there’s anything going on here—nope, sorry. We are waiting for make a wish, which is a slow process we’ve been told. I have started shooting video to send to 4 Paws showing how we live, our travels, Ian’s good/bad/really bad moments, etc. All of that will help them choose the right dog for him and how to train it to the best. 4 Paws has a breeding program after years of rescue dogs failing to meet standards they need. There was a new record of 3 moms having 27 babies in 24 hours! It’s so neat to think that it’s quite likely that one of these puppies could be Ian’s dog in 18-24 months! They have now placed almost 800 dogs… and dogs come from puppies. It would be fun to be a breeding foster family for them, but alas, we’d have to live in Ohio. :-) Amanda: She had a rough trip to Colorado—moody, attitude, and unhappy. Jason went to school with her on Monday and she also had counseling. When I got home Monday night, it was a different daughter greeting me! Smiling, confident, and happy. Tonight, she needed some extra down time, but other than that, she’s continued on that same line. So grateful! I think the extra attention regarding her birthday has really boosted her spirits. Me: Super tired today. The stress of all the traveling and everything caught up with me today. I’m behind on rental phone calls, personal e-mails, paperwork, etc. and had no energy today, but gave myself permission to wait until tomorrow. Thankfully, the house is put back in order (as long as you don’t open the office door!) :-) Laundry hasn’t been touched, but again, tomorrow it will still be there. My umbilical hernia surgery is scheduled for the 8th, a week after we get back from St. Louis. It’s not supposed to be a horrible recovery time after the initial 3 days. The intestine itself is not the problem, but the abdominal muscles just under my belly button have a hole, which allows the intestine to poke through. After 4 years of this slowly growing, it’s time to get it taken care of. I do ask for prayers as we start to ramp up for the St. Louis trip. I’m sad that we decided we can’t make it for a family wedding in Kearney on Saturday, but that would mean we’d be leaving North Platte in 4 days… someday our life will be back to a new ‘normal’ where those kind of events will happen again. Jas: Has a haz-mat meeting tomorrow. This team at the Wal-Mart DC are trained and prepared to recover anyone left in the building if a leak from the refrigerator systems occurs. In that unlikely event, once the pros get there, the team is relieved of responsibility. These meetings occur monthly, but this is the once a year fit test for their respirator. He had to shave his beard down to a very short goatee today to accommodate this—and it was snowing, blowing and miserable out. He swears how much his beard keeps him warm and promises he’ll be growing it back starting tomorrow. :-) Jason is also on the medical emergency response team to provide CPR, basic first aid, and check the basics of blood pressure, etc. They help determine if an ambulance needs to be called, etc. I really appreciate his dedication to these teams as he usually gets less sleep on these days. He gets a small extra pay to do this, but more than that, it makes him a very valuable employee. And now, more than ever, we need this job! :-) Thanks for being such a good provider for us, dear! On another note, Jason’s chronic upset stomach resulted in an ultrasound and additional testing. We received word back that his gallbladder is under performing. He now also gets to see Dr. Seip for a surgical consult. It’s unknown if the gallbladder needs to be removed, or if diet change will be advised. So far, diet change has already helped. His consult is scheduled for the day after we get back from St. Louis. Prayer requests: prep for the trip, Jas and Mel’s health issues, Ruth and Larry are really sick with sinus/bronchitis/ear infection stuff, Mandy’s emotional health, rental house, and Ian to sleep better (it’s a week by week issue—the past few weeks not so great). Thank you!!! We are so blessed to have all of you in our lives!
Posted on: Wed, 19 Mar 2014 05:06:41 +0000