icRKphJXQm-ezth8lntKydifkDg The Loose Screw: 2009

Monday, December 7, 2009

Parenting Adult Children (even when they don't act like adults!)

Yes, I'm back. It has been almost three months since I posted anything. The last time I posted was just before my oldest turned 18. Yes, there is a connection. The past few months have been exhausting, hair-pulling, and heartbreaking. I didn't have the time or energy to get anything done but the basics that had to get done for my family to run. I think I also didn't know what to post, because my mind was so wrapped up in my child's problems.

First of all, I certainly do not agree that when a child turns 18, they are an adult. I feel the time until they are adults varies, often with girls maturing before boys, but not always. But unfortunately, legally they are adults, and unless you have hidden them away their entire lives, they know this fact.

In a nutshell, this boy, my oldest, has had a rough life medically. Seizures, delays, different emotional problems, etc. After years of diagnosing, the diagnosis that made the most sense was Aspergers, the highest functioning on the Autism Spectrum. We were hoping, and still are, that he will have a normal adult life, but we knew it wouldn't be easy and we were prepared to let him live with us as long as necessary. Never did we imagine things would turn they way they did.

Its funny, people have lots of advice and stories to share about their children's childhood, from babyhood to teenager. But I've noticed that you don't hear much in the way of adult children. No cute stories or tried-and-true advice. I'm starting to understand why!

Our oldest son is a good kid-no smoking, drinking, etc. His idea of a fun evening is a church youth group. As most Aspergers kids, he does obsess on things, and his biggest obsession is his unicycle. Last summer, at our city's July 4th parade, he met a unicycle group. These are all adults, and he quickly became friends with a 19 year old in the group, who is a high school dropout but holds a job. Quickly his obsession became even worse.

Disrespect has always been his biggest problem. We've worked on this his entire life, never making much headway. Yes, we are somewhat strict, with love, and hold our children accountable. Grades under 'C'-grounding until it is brought up, disrespect is also grounding, to name a few. We had prepared our son for this upcoming birthday, telling him that even though he was legally an adult, that as long as he lived with us, in our home, he had to follow the rules like always. This was especially true because he had not yet graduated from High school-he was a senior.

Well, the big birthday came, disrespect ran rampant, and over time he refused to go to his classes or do any schoolwork. No job, no license, no diploma-stupid! But we could not convince him of the mistakes he was making. The mood in our home was not peaceful, and the younger kids were getting the raw end of the deal. After he left for the weekend a few times, with us not knowing where he was, against our instruction, we knew things had to change for the sake of our other children. We did convince him to enroll in Job Corps, and he will be moving there in January. We pray that this will be what he needs to finish High School and get a trade. Unfortunately, we had a few months to wait before he left. So, we decided to move him into our 1968 trailer in our yard. He now has complete independence, but needs to tell us when he is leaving, we provide his food and showers and bathroom, but he spends no time in the house relaxing. It has been hard, but much better for the younger kids, and we hope he is learning a lesson. Since he doesn't drive, he doesn't go places unless a friend will come pick him up. And guess what??? Friends are busy with school, work, etc. Unfortunately, we haven't noticed much of an attitude change in the month he has been in the trailer. He can walk in the door and pick a fight with a sibling in moments. We are praying he can mature and change while he is away at Job Corps. Although it feels awful to put him out in that trailer, it is much better than kicking him out to the streets, and wondering if he is alive day after day. At least this way we know he is safe most of the time, and we have some breathing room with a peaceful attitude in the home.

So, that was the condensed version. I'm reading a book right now called 'The Power of Praying for your Adult Child'. I've learned a lot from this book-besides that I need to be praying a whole lot more, that the worrying about your children never ends. It doesn't end at 18-it just changes throughout your and their lives. I pray my son will find peace and happiness, and that we as his parents will have it as well.

Saturday, September 12, 2009

Peach Freezer Jam!

I have NEVER made jam or canned anything for the winter. I suppose part of this has to do with growing up in the climate of San Diego, where my family gardened year-round. My Mom did put up jam, though, but I was never interested in the process.

When we moved into our home five years ago, we planted five fruit trees-apple, plum, peach, cherry, and pear. So far, we haven't had much success with the apple, pear and plum (a few pieces of fruit each year). The cherry tree produces each year but the birds get them before we can. The peach tree exploded starting last year! Both years I have had to thin out hundreds of peaches just so the branches can hold what I leave on it, which was well over 100 peaches both years. Then, we have to cover it with nets so the birds don't eat them all. This year, we successfully harvested many peaches, and after eating a lot, I decided to get brave and try to make jam.

At our local Macey's market, I found nice plastic jam containers with freezer jam pectin, and you use a lot less sugar than the liquid pectin. The first ten jars I did took me forever-I carefully peeled each little peach (they are tiny). The next batch I was practiced, and it went much quicker. Wow, I was amazed at how much juice was in those little peaches!! So, I ended up with 20 jars of peach freezer jam, and I must admit it was easier than I thought. I plan on doing it again, maybe I'll get creative next year and try different fruit!

Can someone out there explain to me how to post pictures without them being all lined up?? I'd like to be able to put them in various places in my post, but using blogger's template (or whatever you call it), I can't figure out how to move pictures around. Help??

Friday, August 28, 2009


I've homeschooled the kids for 10 years now, since Nick was starting 2nd grade. The only exception was that Alyssa wanted to go to kindergarten, and she did. I won't say it has always been easy, but I wouldn't do it any other way. I can't imagine my kids away from me all day for most of their childhood. We've gone through many different curriculum changes, with most of our years of homeschooling being an eclectic mix of different curriculums. Then, once Nicholas started High School, I realized it was important to us that the kids get a diploma. So, we signed Nick up for Abeka Academy, which was an accredited distance high school. He did that program for a year, and it was really hard on both of us. Then, we heard that Utah was starting their own online program you could get a diploma from, using the K12 curriculum. We started that program last year, and have been pleased. My only complaint would be that it is secular, and I would have preferred something with a religious/Christian theme to it.

This year Nick is in 12th grade. Assuming he finishes his six credits for the year, that put him two credits short. So, he is also doing two credits through Electronic High School online. So, he has a full plate. Alyssa is in her first year of High School through UTVA. She did it last year as well, but the High school program is quite different than the K-8 program. In the High School program, they have a different teacher for each subject, and classes they attend online weekly.

Here is my problem. Chad is in 1st grade and I sent him to public school. This has been eating away at me. We have multiple reasons for Chad being in public school (he also went to Kindergarten, but for some reason that 2 1/2 hours a day did not bother me as much). We have always said that we would evaluate each child and each school year individually and meet those needs, even if it meant public school. First, Chad is so much younger than his siblings, he has no one in the family to play with-Nick and Alyssa had each other. Secondly, my health is not as good as it was with Nick and Alyssa at that age. When they were Chad's age and I was homeschooling them, I was very active in the local homeschool groups and we did co-ops, field trips, outside classes, etc. I don't think I could do half as much with Chad. Thirdly, homeschooling Nick (even with it being an independent program and officially I'm not the teacher) is a big undertaking. He is very off-task, distracted, will not do his assignments, and is very argumentative. Much of this has to do with his medical conditions, and of course some is just being a teenage boy. BUT Chad is a VERY active boy, and with Nick needing to get more than the normal six credits done this year, I feel I need to focus on getting Nick graduated before I can really focus on schooling Chad. Even then, I wonder if homeschooling will be right for him.

In the meantime, I feel awful with Chad gone all day. It just does not feel right, and it bothers me so much. But then there are days when I get so much done while he is gone, that feels great too. Also, when I am having a bad health day or flare-up, it is so much better on my body to be able to take my medicine and go back to bed in the morning after getting Chad off to school. This week was the first week of High School, and I realize it would have been much more stressful with Chad at home. I guess what it comes down to is that I have homeschooled for so long, and have always had my kids home with me, it feels not right for one of my kids to be in public school, almost as if he is not as 'important' to me as the older two, and with him being the adopted one as well, I don't ever want him to think that way. We are doing what we feel is best for him, and he absolutely adores school and his teacher. These early elementary years I really don't worry about the things that bother me about public school-those things mostly happen in later elementary and middle school, when other kids are mean and self-esteem can be so low. Unless my health is really poor by then, I hope to homeschool him in the next few years, but I will try to be true to doing what is best for each child, each year. I must say I am already looking forward to his month of being off-track in October!!

Wednesday, August 5, 2009

Sleep study part 2

My last sleep study post I was waiting to go back for the follow-up night at the lab to find the right setting, so I could get my machine. I thought it would be simple. Turns out it wasn't-not a surprise in my life with this body of mine!! The second night at the lab was awful-the tech. had trouble getting my leads attached to my skull, and I did not do well with the apnea airflow being pushed into my nose. It is the strangest sensation-a force of air going in your nose, and if you open your mouth the air rushes out. It's hard to talk too. At first when I felt the sensation of the mouth air, I started laughing and couldn't stop. That didn't go over too well with the tech. Geez, get a sense of humor.

So, after getting my giggling under control, I had the worst time sleeping. It was awful, and I thought there was no way I'd be able to do this night after night at home. About a week later, the doctor called to tell me that something interesting happened during that second night. Surprise, surprise. Anyone who knows my health history is NOT surprised. So, originally they said I have the most common type of apnea, obstructive. This is most likely due to the fact that my windpipe and esophagus were damaged during one of my surgeries, and they don't seal right or something (don't know the technical term). So, all you should have to do is force the air in the airway. Well, when they used the cpap machine on me that night, I still had times that I stopped breathing (which shouldn't have happened on the machine), but after those episodes I would over-compensate and go into a central apnea episode. Central apnea is a less common, more serious condition where your brain is sending the signal to not breathe. So. What next? The doctor ordered a smart bipap machine, which monitors your breathing and adjusts the airflow to what you need. This would hopefully stop the central apnea episodes and help with the obstructive apnea. It also has a computer card so after it has been a month, the doctor can download it and see if I had any apnea episodes and what airflow levels I was on.

So, I got my machine. It's pretty cool-it even has a humidifier so my nose doesn't get dried out from all that air. A rep came out and set it all up for me, fitted my mask, and showed me what to do. I was amazed at how quiet the machine is-you honestly do not hear a thing, at all. The first night was rough getting to sleep, but I woke up so wide awake and refreshed! It felt like a miracle, and I was so excited that this would be the rest of my life-I would have energy! Well, it has been almost a month now and I think it has helped my energy, but not as much as that first night. I've had some immune system flares so that hasn't helped much. All in all, I'm happy with it. I don't always last all night with it on-generally my max is until about 5 a.m when the dog needs out. I'm anxious to hear what the doctor has to say about if I've had any apnea episodes. I need to call and find out what I need to do to get the info. downloaded to him. I did get a great book from the library that I would recommend to anyone investigating sleep apnea. It is 'Snoring and Sleep Apnea' by Ralph Pascualy, MD. I'm going to buy my own copy even, it has lots of great resources. I've also been pleased with the company that supplied the cpap machine-they have called to check on how it is going,encouraged me to hang in there, and even sent me a smaller mask when I mentioned the fit of mine. It's always great(and rare these days) to get good customer service.

Swine Flu part 2 (originally H1N1 fun)

So, our H1N1 saga did continue. Alyssa completely recovered from her H1N1 and subsequent infection, though it took a lot out of her. A couple weeks after she recovered, Chad got it!! Of course this was at the start of swim lessons, and he was having allergy issues anyway, but the chlorine seems to make him cough the first few days he is in the pool. So I didn't take him to the Dr. right away, thinking it was allergy/asthma related. Once I took him in (about 4-5 days after onset), it was too late for Tamiflu. So he was on his regular nebulizer regimen, which helped but didn't get rid of it, and we ended up back at the doctor's the next week to get a steroid prescription. That finally got rid of it. He had a few high fevers that got us really nervous, but he did really well while he was sick and confined to the house. I got on Tamiflu AGAIN. So, after school ended it was one child after another, and by the time all three kids were through this *crap*, it was just a few weeks until Chad started 1st grade (year-round here). So, no camping trips or quick trips to nearby fun spots. Oh well. Maybe in October when Chad is on track break. Since the high school kids are homeschooled we can do things like that (if it isn't too cold then!)

So, that is (hopefully) the end of our Swine Flu saga. I'm hoping the kids have an immunity to it if it breaks out again in the Fall!

Thursday, July 30, 2009

Summer Update!

I can't believe how this summer has been flying by! Since my last post was over a month ago, I figure its time to get caught up. I'm going to do a few specific posts to follow up on previous ones, but this is just a general rambling first.

The past month and a half have been kind of crazy. Our oldest has had a rough time, losing his job and just not doing well medically/emotionally in general. Right now we are trying to find a program at the U of U Neuropsychiatric Institute that may be a better fit than what we've been doing for many years, which is meds with counseling. We are just waiting for an opening for an assessment. He also was supposed to be taking two credits this summer through electronic high school, yet they decided to revamp their system at the beginning of summer break, and we just now were able to put in course requests.

Alyssa hasn't been too busy-an overnight yurt/boating trip with youth group (Nick did this as well), some babysitting, a few dance classes, and hanging out with friends. The lucky girl is leaving for 10 days in San Diego with her grandparents soon!

Chad is already back in school! He started 1st grade July 27th.(The older kids don't start until the last week of August) Hmmm....maybe there is some connection between my last post being near his last day of school and this post just after he went back......Anyway, I'm having a bit of a rough time with it, it goes against all my homeschooling spirit to send him to 1st grade for SEVEN hours a day! We've always said that we would treat each child and each school year individually and do what is best for the child/year. Well, for Chad, who has no siblings anywhere near his age and is very social, this should be the right thing. Also, it is Nick's senior year and he needs a lot of help-there is a lot riding on getting a diploma, and school is tough for him. Already, although he has been tired, Chad is loving his class (lots of kindergarten friends in it), and his teacher seems great-a man teacher this year! It just seems that the summer was SO short for him, and we never had time to take any quick trips or anything. Maybe in October when he has his first track break for the month. Chad's short summer break was fun for him-mostly riding his new big bike, playing in the sprinklers, and playing with neighborhood friends. We did squeeze in two sessions of swim lessons, VBS, and a day camp for a few days at the dance studio, where he learned some clogging and tumbling.

My health has been kind of up and down during this time. Some flares and some days of feeling well. I'll do a separate post soon on the latest developments.

Our family did have a nice Saturday hike up to Donut Falls in big Cottonwood Canyon a few weeks ago. It was a harder hike than we thought it would be, but the waterfall was really worth getting to. We brought a picnic lunch and enjoyed the cooler temps and cold creek water!

Hot-our house! Our A/C broke at the beginning of summer, and even though we kept our home warranty, a lot of what needs to be done is our responsibility, and we are considering not fixing it at all. Way too much money. We have a portable swamp cooler that helps, but with our floor-to-ceiling west-facing windows in our great room and super-high ceilings, most days our main floor is between 90-100 degrees by afternoon, only dropping down by late evening. Our basement seems to be somewhat cooler. Needless to say, we are eating simple, microwavable and crock pot dinners instead of using the oven or stove.

Coming up, I'm planning on posting an H1N1 update, and a sleep apnea one as well.

Friday, June 19, 2009

H1N1 Fun!

Not really. It hasn't been fun. If you had told me a month or so ago that H1N1 would sweep through our family, I would have freaked out. But, it really has not been that bad, not as bad as I had it hyped up to be in my mind. Granted, ours stayed under control and we got medical attention quickly with a diagnosis, which I think was the key. So, here's what happened:

About 1 1/2 weeks ago, Nick (17) had a sore throat and dry cough one night. Jeff was thinking H1N1, and with my illness(es), was considering putting either Nick or me in a hotel. We decided to wait and see how he progressed. He ended up with a low grade fever, cough, and mild chest congestion. Being as he is the only child with a bedroom down in the basement, we told him he needed to stay there (I hope that doesn't sound cruel). When he occasionally came upstairs, he had to wear a mask and use hand sanitizer. We also prepared all his food/drinks and passed them to him at the top of the stairs. Poor guy, sounds like he had leprosy but we really didn't want this to spread. We did take good care of him, really. We never took him in to the doctors because it never got concerning, so we just figured it was a run-of-the-mill cold/flu.

Fast-forward to one week ago today, Friday. Alyssa had a scratchy throat and dry cough. BUT, she also had her year-end dance recital the day before and had been running around like a wild woman for a few days, so she/we figured she was just over-tired. She spent the day taking it easy and by evening, reported that she felt fine. The next morning, Saturday, it only took one look at her emerging from her room to know she wasn't fine. She looked like death warmed over. She had a fever, cough, sore throat. Since my husband was home from work and we try our best to have me avoid any medical places not necessary, he decided to take her in to urgent care. They did a swab for Influenza A, and it came back positive. Apparently, H1N1 is a subcategory of type A, and as it is the one going around right now in Utah, especially among teenagers, if you test positive for A they assume you have H1N1. There are so many cases right now here that they have stopped testing directly for H1N1. So, she got a prescription for Tamiflu, which is supposed to hugely cut down the illness symptoms and time frame right away. They also prescribed it for me, due to my immune system. Nick, who by now was feeling much better, they said for sure had it but it was too late to give him the Tamiflu as he was on the mend.

The next day, I had a sore throat and felt yucky, but that could have been allergies and my normal junk. I guess we'll never know for sure. I kept taking the Tamiflu and came out fine. Alyssa felt better Sunday, and a lot better Monday. The doctor said that as long as she didn't have symptoms she was not contagious. Well, Tuesday afternoon my teens were to leave for a 3-day retreat in the mountains outside Park City in Wanship, UT. Not tent camping but in a lodge. After calling the doctor yet again and being told she was not contagious anymore, and Alyssa begging, I went against my mother's intuition (big mistake) and let her go. At this point she didn't have 'symptoms', she just had a tight, raspy voice.

This same day, Jeff was feeling like he might have it. He went in right away (major for him, as he never goes to a doctor) but tested negative and was told it was probably a sinus issue. He felt better the next day. All during this time, I was worried about our littlest guy, Chad, as he has asthma and just has a hard time fighting off any respiratory stuff. We were still being diligent with face masks, hand washing, etc. so I'm sure that helped him to never get it.

So, off the kids went on Tuesday, with my intuition nagging at me. Yesterday morning, Thursday, I got a phone call from Alyssa asking me to come get her. She had been vomiting all morning and felt awful. She also thought she had run a fever the day before and had a very tight chest. My first thought was the H1N1, that it had turned into pneumonia. My second thought was what a bad mother I was to not go with my instinct and make her stay home. My third thought was she had probably infected everyone-yikes! Bad mother again!

Chad and I packed up in the car for the long drive. I've never driven in the mountains by myself, so I was a bit nervous. Of course, once we got up into the windy mountain roads and the windy narrow dirt road to the camp, it started pouring rain, hailing, with thunder and lightning. Great. It took about 1 1/2 hours each way to get her, and I did it. Whew. Alyssa was actually feeling better, but I could tell right away how tight her chest was. She also has lots of respiratory problems (seems to be her weakness), so on the drive home I made a doctor's appointment. The entire drive home I was thinking Bad Mother. Bad Mother. Bad Mother.

Surprisingly, the doctor said it was not the H1N1, but rather a secondary bacterial infection in her chest. She had finished the Tamiflu the day before, and the doctor was certain this was not the flu at all. Whew. I was also very relived that her lungs were clear, as she has a tendency toward pneumonia. So, we left with antibiotics and Mucinex and orders for her to rest for two full days before getting out and about again, with more days of rest if needed. She crashed out at home (there's no place like home after you've been sick on a trip!), and we're hoping she improves today.

Through all this, I've wrestled with the whole issue of whether I should have made her stay home or not. I think I should have, but I also think she learned a lesson in all of this. At a certain stage, we have to let them have some input with these types of decisions, and Alyssa is a very mature, level-headed young lady. She knew I had reservations, and now I think she knows to lean on Mom's reasoning a bit more. I could have kept her home, and she would have not argued, and I should have gone with my instinct. I question that instinct constantly, but it almost ALWAYS turns out to be right. Also, I'm relieved that in our case, the H1N1 was not that bad-we've had worse flus, much worse. With my illness, everyone tends to freak out just a bit with things like this, but it all turned out okay. Hopefully Alyssa will be herself in a couple days too.

Tuesday, June 16, 2009

Alyssa's dance year!

It's about time I post on Alyssa's dance, since it is a big part of her life. This year, as in the past 5 years we have lived in Utah, she took dance at Starz Unlimited, a non-profit cooperative dance studio, with a large number of homeschool families. http://www.starzunlimited.org/ It is a great studio, focusing on modest music and costumes, and everyone working together to make a great experience for the kids. I've helped by doing the accounts receivable for the past three years, and this was my last year with that job. It will be strange to not do it anymore, but I'm hoping to find a new job to help with.

Alyssa has taken ballet, pointe, lyrical/jazz, and clogging at Starz. The past three years she has been on a competition clogging team, and quickly moved up to the championship level this past year! This year she was on an all-girls team, with a variety of ages, Alyssa being the youngest at 14, and the ages ranging up into married young moms in their 20s. This was the first year she was not on a mixed boys/girls team, which she did miss. For the past two years, Alyssa has been involved in another dance studio, Mountainwest ballet's, Nutcracker performance, which is a big time commitment from September through Christmas, with multiple weekly classes, and then rehearsals, costume fittings, performances, etc. Due to the Nutcracker schedule and her regular Starz ballet/pointe teacher having a baby, she decided to wait to take any ballet/jazz/pointe classes until after Nutcracker. Then at the beginning of the year, she decided she wanted to take a break from her crazy dance schedule and only be in clogging for the rest of the dance year. Clogging alone can be quite busy during competition season (Feb-June).

Competition season went great, and Alyssa's team got ALL 1st place high gold on both their dances (Ladies choice and A Little Less Conversation) at all four competitions, including Nationals! She had so much fun with these dances and the group of girls on her team. Each year, they have a new dance and do the previous year's new dance for a second year before it is retired. So, next year they will do A Little Less Conversation again plus their new dance. They also got to perform at Starz' end of the year recital last week.

Alyssa was also a teacher's assistant for a 3 year old ballet class of girls and boys. She has really enjoyed doing that this year and hopes to assist again next year. Their dance at recital was adorable, and the kids had the audience roaring with all their cute antics!

This summer Alyssa will be getting back into ballet/pointe/jazz with Starz' new teachers, and decide if she will continue with ballet/pointe next fall. She also wants to try ballroom dancing, which I think she would be good at.

Here are pictures from recital, some from the class she assistant teaches, from her clogging team, and one from this year's Nutcracker. In the two team pictures she is in the front. I'm sure I sound like a typical bragging Mom, but I/we really think she is a beautiful dancer, and has so much talent and potential. We're proud of you Alyssa!!!
I really need to learn how to arrange pictures on this blog!

Saturday, June 6, 2009

Sleep Study

For several years, I've had various medical professionals suggest I get a sleep study, due to my fatigue/sleepiness. I always brushed it off, thinking who wouldn't be sleepy/tired with all the medication I take, most of which has drowsiness as a side effect? Then when I got my autoimmune diagnosis last year, it made even more sense that I was so fatigued-that's one of the biggest symptoms of autoimmune disease.

Well, in April when I had a stomach bug I went in to the doctor, and my regular PCP was not available. I got a new doctor to the practice, who specializes in sleep disorders. He right away mentioned that my airway is extremely narrow, and started talking about a sleep study. After thinking it through, I decided it couldn't hurt to get it done. Then at least when the next doctor asks me, I could say I had it done and don't have a sleep disorder.

The night before memorial day I went to the lab to have it done, super anxious about if I'd even be able to sleep. I got all hooked up and tried to get to sleep. The lab was very comfortable, it was like I was in a bedroom. The problem I was having was with the thing up my nose-just like the oxygen one that has the prongs in your nostrils, yet this measured inflow and outflow. It was sooooo annoying. Anyway, I guess about 1 1/2 hours later I fell asleep. They woke me at 5am to go home. I felt like I had been a little more restless than a normal night in my own bed.

Anyway, I got the results a few days ago-sleep apnea! The doctor said I stopped breathing at least 10 times per hour, plus I NEVER had the deep REM sleep. So, no wonder I'm tired! Now I'm super excited that maybe I have the chance to feel a lot better once I get on the CPAP machine. I will have to go back in overnight for them to get the pressure right on the CPAP, and then I'll get my own machine later that week.

I know it probably seems wierd to be excited about this, but I really am! Honestly, I thought my life would always be the way it is now due to meds and my illnesses, but now to have something that can actually be fixed/helped-wow!! I don't have my appointment to go back to the sleep lab yet, but I should get it within the next week or so.

Thursday, May 28, 2009

Neglected blog!

I have neglected this blog horribly! It really has been a wild month, crazy in fact. A few days before my last post, we took in two little boys for foster care. Of course I can't say names or show pictures, but they were 4 & 6 years old, brothers, and really great kids. Chad was thrilled to have them living with us, and they got along really well. We had them for just about a month, and then foster parents interested in adopting them were found. They have been gone for a few weeks now, and oddly, Chad does not mention them. Even though he had a great time with them, I think he was ready to have us back to our regular family of five.

Unfortunately, a few days after the boys arrived, I got this awful stomach flu. The first several days were terrible-then I started feeling a little better. That lasted a day or two, before it all started again. This cycle went on for more than three weeks! I did see a doctor, who said whatever stomach virus was going around was lasting about 2 weeks, then factor in my messed up immune system and you get what I got!

So, I tried my hardest to care for these boys, of course with lots of help from the rest of the family. But I really felt crappy most of the time, so I know I wasn't much fun. I know they were well cared for, safe, and had tons of fun playing all day every day, and all of that is a major improvement from life before our home. I still couldn't help feeling like I didn't give them all that I could have, but I guess I didn't have much choice. It was unfortunate timing. I'm happy that the boys are in a good home and have the opportunity to have a great life now, and that we could help them on the path even just for a month. Of course we learned from them as well, it is amazing the strength and resilience these little ones have.

I'm not sure what the future holds for us as far as foster care is concerned. This was our first placement in two years, due to my health. I really felt worn out, but I'm not sure how much of that was my flu. I've already received a call about taking in more kids, but I said we needed to finish up the school year and then we'll decide what our next step is. Foster care is something both Jeff and I feel is so important and we love to provide a safe home for these children, but I have to consider my health and how much I can handle. Even with a husband and teens who can help, it still turns the household upside down and is quite a bit more work. So after school is over, we will make that decision.

Since the boys have left, and now that I'm feeling better, I've just been trying to get back on track with life. It is a crazy time of year right now with my homeschoolers trying to finish the year, the dance year ending (I do the finances for Alyssa's dance studio), clogging competition season just wrapped up, and all the summer activities already starting! I will have to do a separate post on Alyssa's clogging season, she did awesome!

Thursday, April 16, 2009

Great News!

To follow up on my last post, after a weekend of trying not to worry (I wasn't too successful), I got my test results. Mammogram-the second one did not have the spot! I saw the first one, and the spot was right there, about the size of a dime. The radiologist said it was probably 'compressed tissue' that was flattened out more on the second test. The dexa scan to measure the amount of the osteoporosis-the second one was normal! Nobody(at the hospital) has an explanation for this one, except that maybe I'm borderline and my hip and lower spine (2ND test) didn't show it as my fingers did (1st test). So, after a rush to get me on Estrogen (which I've been on a week) to help build up the bone density, now I'm going off Estrogen and back on the other hormones. My poor body-confusion! I am so glad to get off the Estrogen, it made me sick to my stomach. The doctor wants me to repeat the scan every 2 years since I had the positive one, and take a lot of calcium. Needless to say, we were THRILLED! We knew the mammogram could turn out to be nothing, but the bone scan was pretty much a given that I had it, just measuring the severity. So to have them both turn out fine was wonderful, just what we needed. It was also such a reminder that worrying does not accomplish anything, and I need to put my faith in God. He will take care of me. He did! Sometimes it doesn't work out to be the results we want, but this time His will was the same as ours.

Then, as if that weren't enough good news, my regular test results on my organ function came back all great! My kidneys have spilled protein recently which was a concern, but even that was normal! I was just overwhelmed. I've never received so much good news about this body of mine before!

Thank you everyone who was praying for me! Thank you Lord-you are awesome!

Monday, April 6, 2009


Last week, I had several doctor appointments, and had my regular organ function tests run and some not-so-regular tests. A few results came back, and they weren't good. The first result was from a bone density exam. This usually isn't run on women my age, but I've learned from experience that my body seems to think it is that of an old woman's. I asked to have the test done, and it came back that I am in the beginning stages of Osteoporosis. I'm only 40! The good news is that it can be reversed, and some medication changes are being made to start trying to do just that. Tomorrow (Tuesday), I am going to have a full body Dexa scan at the hospital to confirm the diagnosis.

The second result was from my first '40 and older' mammogram. A suspicious spot-ugh. This was not my first mammogram-approximately 12 years ago, I had a lump, so I had a mammogram then, followed by an ultrasound. It was determined that I had fibrous tissue, not a tumor or cyst. So, I am hoping this is the case again. Tomorrow I will have another mammogram (and possibly ultrasound) while I am at the hospital for the scan.

The results for my other tests have not come back yet, and I don't know if I want them at the rate we are going. In the past 4 days, I have gone back and forth between questioning 'Why? Why me?' and feeling totally secure in God's plan for me. Really, it's not even 'Why me?' , but more 'Why my family, my husband, my kids, my parents?'. I feel worse for them, I feel tired for them, I feel guilty even for putting them through trial after trial. Each surgery I have had, no matter how much pain I have been in, there is nothing worse than seeing that worried/pained look on my loved one's faces. I HATE putting them through this. I want things to go well, and to get good news. I want to be healed. BUT I try to remember that God has a plan for me and my family, and He is in control. Even when it may not seem like it, He is there for me.

To me, there is something far worse than my health problems, and that is when a child is seriously ill. For the past few weeks, I have been following the blog that goes along with the 'Pray for Stellan' picture on the right side of my blog. This precious little baby boy has a very serious heart problem and needs our prayers. I only understand a tiny fraction of what this family is going through, from spending time at the hospital with Nicholas when he was a baby with breathing problems, or during his seizures when he was younger. I cannot imagine anything worse than worrying that your child's life is in jeopardy. Stellan's mother has shown such incredible faith during this time-she has been an inspiration to me, as I'm sure she has to many others. It seems that whenever I am questioning 'Why?' in my own life, I am reminded of how much worse things could be, and how much stronger in my faith I could be. Please pray for Stellan and his family, and for God's will in my life as well.

Thursday, April 2, 2009


I can't believe this is my son, that he is 17 years old, a junior in High School, and going to prom! With his girlfriend! Wasn't he JUST a baby that I held in my arms? It certainly seems that way, but time has flown by and here we are, going to prom. I am so proud of Nicholas-he looked very handsome in his tux, but I am also proud of the young man he has become. His girlfriend Victoria looked so pretty in her pink dress with her hair done up, and they coordinated very well, thanks to smart Victoria giving Nick a paint sample strip to take to the tux shop! The tux shop, by the way, is awesome! This is the second time we've used them-I originally parked next to their van in the grocery store parking lot and saw the ad of $39 tuxes, but I figured there must be a catch. No, no catch-they run the shop out of their home in West Jordan, and provide great service. The name is Tip Top Tux, and if anyone needs the phone number just email or call us.

Anyway, the prom was wonderful, according to Nick and Victoria. They ate out with another couple at Chili's, and then both couples went together to the prom, which was at the State Capitol! The capitol building is very pretty at night, up on the hill all lit up, and apparently they have a great ballroom with a light-up dance floor. I'm thrilled that they had such a great time! There are more pictures on both Jeff and my Facebook pages, too.

Tuesday, March 31, 2009

Illnesses..es...es Part 2!

This is so hard to write about! Hence the length of time between Part 1 and Part 2. I really don't like writing about it for several reasons, one of which is it is hard to keep track of everything that has happened!! But like I said in the last post, I think it is good for me to get it out here since it is a big part of our lives. I do think it is somewhat therapeutic to write about it as well.

So, last time we left off at the spine surgery where they built the internal neck brace. I realized I forgot a few things that happened before this surgery, so I want to mention those first. After the second fusion attempt, I couldn't swallow without inhaling liquid/food, choking, etc. After x-rays and swallow studies, it was discovered that in going through the front of the neck to get to the spine, my esophagus was damaged. The flap doesn't seal tightly anymore and they couldn't fix it. So, I had to have 'swallow therapy'. While I was being x-rayed, I would swallow the dye/solution that shows up on the films. I swallowed many different ways until things worked right. Then I was on my own to get used to swallowing that way-it is my normal swallowing forever, more of a gulp with a lot of air to it. I'm usually not aware of it, it is second nature now.

The other thing I forgot about was continuing to have problems with sores and things not healing well, excessive bleeding, etc. I looked online and after much searching, found something that I thought fit my symptoms. I asked my PCP at the time, who had never heard of it, but ordered preliminary tests. Those came back positive for a form of hemophilia called von Willebrand's disease. So then I was sent to an oncologist/hematologist for further tests, and it was all confirmed. Basically what we learned is I am missing factor 8 in my blood, which means I do clot eventually, but it could take a long time if it happens at all. I had a few other factor problems that I don't remember now, obviously they weren't as big of a deal. This blood disorder meant I needed the factor replaced for major bleeding things like surgery, and any fall or big blow to the body could be causing internal bleeding. We also stopped my periods artificially, since they were a major problem, lasting too long and being too heavy. Anemia is very common with this disorder. Since I was diagnosed, just last year my daughter Alyssa (14) was diagnosed as well. When you have this disorder, you have a 50% chance of passing along hemophilia to your children. Poor Aly was the lucky one!

OK, back to the story. The spine surgery was done, everything was healing properly, and I felt HORRIBLE. Worse than before surgery. My entire body ached, my joints were stiff, and I was extremely fatigued. Everyone (doctors included) kept saying to give myself time to get over the surgery, but I knew something was not right. I remember in November, around Thanksgiving, 4 months after surgery, I thought I was close to dying. I had to use a cane a lot, and felt like crawling on the floor instead of dealing with the pain of trying to walk. Finally, in January 2007 I was referred to a rheumatologist, who ran a lot of tests. I remember getting the results the day before Valentine's day. I had a multi-organ autoimmune disease, and my numbers were so high they were off the charts. There are hundreds of autoimmune diseases such as rheumatoid arthritis for one, which are organ specific. In my case, my immune system doesn't protect me as it should, and instead attacks my own cells/organs/tissue, basically any part of my body is fair game. I don't have a specific name for my disease at this point except that it is a connective tissue disease and multi-organ autoimmune disease. There is no cure. Usually it attacks joints, muscles in the early stages and then organs later (often kidneys first, then liver but it could be anything). I was told that if I were to get sick it can get worse, being in the sun can make it worse, as can stress. When I was told it was terminal with no cure, I was numb. It just couldn't be. I remember going to Walgreen's for Valentine's candy for my kids, and just standing there in a daze, thinking this will probably be my last Valentine's day. Then the tears started once I got into the car.

A lot has changed since that day-obviously, it was not my last Valentine's day (I've had 2!), and I have learned a lot, prayed a lot, been prayed for a lot, and I'm on medication to help ease the symptoms. I've learned 'terminal' is relative. With this disease, it could be 20 years from now, or yes it could be next month if something were to happen and my organs shut down quickly. I've learned to relax about it, and take each day as it comes, as a gift. The only problem with that is this disease makes you feel like crap! I want to be loving life, but I'm fatigued and everything hurts. What did help me a lot was an old anti-malaria medicine, which takes the edge off of the symptoms. The side effect, though is that it damages the cornea. So, my eyes are checked very carefully so I will be pulled off the medicine quickly if changes are noted. I also have osteoarthritis in many joints now, so its hard to tell which disease my pains are from sometimes! I go to several doctors, and my organ function is checked every 3 months if things are going fairly well. So far, the disease has stuck to my joints/muscles, with a slight problem with my kidneys last Fall, which they are watching carefully. Odd things happen, like a few months ago I woke up with a torn rotator cuff! After several weeks in pain and not being able to use my right arm (just before/during Christmas!), the pastors and elders of our church got together and prayed for me. The next day, my arm felt significantly better, and healed completely soon after! We had been afraid I would need surgical repair. This was a big relief and praise on this rollercoaster of ups and downs, and a reminder of God's healing power.

When I was first diagnosed, I was told that there is remission, however the medical profession has no idea how it happens. But, the doctor told me that sometimes they can do chemotherapy or a bone marrow transplant to 'trick' the body into remission. I held onto hope for one of these treatments, and finally was told several months ago that I was not a candidate for them because of the way my immune system works (or doesn't work)-he came right out and said he was absolutely sure I would die from the treatment.

So, now I am on a lot of medication. I am on disability, which helps replace the income I lost, but is pretty much eaten up by medical/prescription copays. I am thankful for it though. I could sleep 23 hours of the day easily, but I don't. I do easy household chores and easy meals on good days. I try to smile and have fun, even though I'm tired and in pain. Some days are better than others. During cold and flu season, I have to avoid people so I am home a lot. I long for a 'normal' relationship with my family-being active physically together, but we try to find OUR 'normal'. I try to be thankful each day, and not get down about missing out on activities outside of the home. I am very thankful for my awesome husband Jeff, who has been through so much with me during our 20 years of marriage. Most days, after dealing with the most horrendous crimes against children, he walks through the door and is willing to help do whatever I need. Plus he has a second job just so we can get by. My kids are so understanding and caring, and I love them so much. My oldest two, Nick and Alyssa, still are homeschooled, but they are doing a virtual school and only need me to supervise. My youngest, Chad, is in kindergarten half days. If my health improves, I would like to homeschool him eventually. Our families are all far away, so we have been without extended family support through all of this, but we've had the support of wonderful friends and church family. I am blessed. I know God has a reason for my illness, and I know He can heal me if and when He chooses. I appreciate your prayers for me and my family, and I will try and update about my health when necessary!

Wednesday, March 25, 2009

My Illness(es..es..es....)

I figure it's about time to go into this subject, since I touch on it here and there in posts and in my profile. I might have to do this in a couple posts even. Here goes-as a child, I was fairly healthy. I was adopted, a closed adoption as they all were in the 60s I think! So, we had no access to medical records, conditions, anything. When I was a pre-teen, it was discovered I had scoliosis (curvature of the spine). Mine was up high between the shoulder blades, and was already too advanced for a brace to be helpful. Usually, (back then at least) they were trying to just stop the curve from worsening, not trying to correct anything. The doctor we saw suggested surgery to put in a steel rod, and I would be in a body cast for several months (9 I seem to remember). My parents looked into alternative treatments (quite surprising now that I think of it!!), and found an experimental study going on using something called a Scolitron. For about 3 years I wore this machine at night for 8 hours, with electrodes at the top and bottom of the curve, and for 8 seconds it would electrically shock my spine completely straight (I know, crazy and painful) and then let it rest for 8 seconds. It took a long while for me to get the shock up high enough to straighten for those 8 seconds, I had to increase the power a tiny bit each night, as much as I could bear. I finally got used to it, and actually at the end of the 3 years, had to wean off of it!! It did stop my curve from worsening, and they x-rayed my wrist each month to see when I stopped growing, so I could be done with the treatment. I finished growing in 8th grade, and it was really weird to know that fact!!

The reason I'm explaining all of this (beside the weirdness of it), is we really do not know how much of it had/has an impact on my spine now. Maybe I should have had the surgery. All we know now, is that the experimental treatment was not approved by the FDA, in fact was just about laughed out. Most spine specialists now have never even heard of such a thing and are 'shocked' (ha!) by it. All I know is my parents did what they thought was best for me, and I love them for that. I can't imagine putting my child through the surgery they were describing either, if there were other options. Plus, my curve did stop curving! Would it have anyway on its own?? Maybe. I ended up with the curve crushing my organs and ribs a few centimeters permanently, which is normal. Does all of this contribute to my problems now? Maybe. Probably. It depends which doctor I am seeing. Frustrating. I do know the Greatest Doctor knows all the answers to my questions, and He will answer them for me in Heaven. Until then, back to the story.....

In my 20s, things were pretty much OK, I had my two biological children. I know now that things weren't fine and that is why I had trouble with my last pregnancy and other little things. I couldn't have any other kids because my body didn't want to keep them inside me. Then about 10 years ago, my bladder fell. Now, this happens to women who have had lots and lots of babies, huge babies, etc. Neither had happened to me. Couldn't figure that one out (but we know now!), so I had the bladder surgically put back up in a little sling made out of my ligaments and all was back to normal.

Around 2001, my upper spine/neck was really hurting. It always hurt by the end of the day, and I was told this was due to the scoliosis. But this was much worse. I was working at home as a medical transcriptionist full time, so lots of computer work. This is when I found out that I have degenerative disc disease. My discs had not herniated, they had dissolved/disappeared. I needed surgery to have two spinal levels(c56, 67) fused together with artificial disc material placed in them and plates and screws. I had to have a really horrible test done in the OR while awake, that I still have nightmares about to this day. They couldn't give any pain meds because they needed a true response-yuck. So, I had the surgery in March. They went in through the front of the neck (a surprise to me), and because my veins did not cooperate I had to have a port in my chest. The recovery from that surgery was awful. I was in a hard collar for 2 months, which was so uncomfortable. Then a soft one for a few months after that. The bad news was that the pain did not go away. We kept giving it time, giving it time, but time didn't work. Finally, after a move, a new neurosurgeon (we switched from orthopedic surgeon to neurosurgeon-good move) did an MRI and said the spine never fused to the hardware. So, in 2003 I had the surgery redone, this time with a new 'miracle-grow' cell producer liquid dripped into donor bone. A plastic surgeon came in and took out my old scar, which had not healed well (another clue for later), and tried to make a better one. Also to try to encourage fusing, I wore a bone growth stimulator around my neck during the day for about six months. During this surgery was when the broken screw was noticed and could not be retrieved, hence the name of my blog. There was some question of a bleeding problem during this surgery, and a blood clotting medication was used during surgery, but at a consultation with a hematologist afterward he said there was no problem.

We moved to Utah, and I was feeling better than after the first surgery, but still in a lot of pain. I saw a neurosurgeon here, and she showed me how the second fusion did not take either! On top of that, now there were problems compounded-the vertebrae underneath the fusions had shifted, causing a 'step-down' to my spine (I still have that), bone spurs, degeneration at a level immediately above and immediately below the old fusions, and at certain movements of my head, the edges of vertebrae hitting each other. So, not good. While waiting for surgery, I had a few outpatient spinal blocks done in my neck and other fun things I can't even remember to try to ease the pain. I wore a brace until surgery, which was July 2006. Because I had been entered twice in the front of the neck, she had to go in through the back, which is harder surgically to work with. She decided to add in one of the new degenerated levels (c7-T1), but to leave the other one (c45) for later (something to look forward to-yea!). She put in mass plates at the facet joints (I think I have that right), and basically made an interior neck brace so that the unsafe movement that was happening couldn't happen anymore. Also, this interior neck brace would not count on my body to fuse, it wouldn't need to as this hardware would hold everything together. The drawbacks to having this major of hardware inserted was that she said I would forever have pain, though hopefully not as bad as it was before. Also, I could never do any athletic activities-walking was about all that was safe. No lifting over about 10 lbs. Lots of restrictions, but it seemed worth it. The pain is about the same, but its hard to tell what is arthritis (which I have now), DDD, scoliosis, or autoimmune (below).

After this surgery, my spine healed well, but my body fell apart, and we now know that the surgery triggered my dormant autoimmune disease (which we didn't know I had) to make a MAJOR appearance. I think that will be the next post, as this is getting TOO LONG. Next post-autoimmune disease, and all the fun you can have with that!

Tuesday, March 17, 2009

Riding on two wheels!

click on image to see larger
This past Saturday, March 14th, we had beautiful pre-Spring weather. I left to go to the store and was gone for only about one hour. While I was gone, Chad asked Jeff to fix his bike because the training wheels were falling off. The training wheels were unrepairable, so Jeff decided to just take them off. Chad asked to try the bike without the training wheels and Jeff figured they'd give it a try, but never thought he'd catch on so quickly, especially knowing I wouldn't want to miss this big event! To his surprise, Chad got on and hardly needed any help. By the time I got home, he was riding fast, turning, looking like he had been riding on two wheels for a while!! He is growing up so fast, I can't even be away for an hour! I'm sure Nick will be wanting to teach him how to unicycle next (yikes)!

Wednesday, March 11, 2009

Our Littlest Shoveler

A few weeks back, we had a snowstorm, and Chad asked if he could shovel. I said sure, thinking he would use up some of his endless supply of energy pushing the snow around. I always keep the front blinds open when he is out front playing so I can keep an eye on him, but I really didn't watch WHAT he was doing. After about half an hour he came in and told me he was done, and would I look outside at what a good job he did. I went to look, expecting to not really see anything, but was I shocked! This six-year-old can shovel snow!! He had shoveled the sidewalks, walkway to the house, and driveway, and done a GOOD job! Yesterday, when it snowed, he asked if he could shovel again. Remembering the fuss we all made last time, he asked if he could earn a dollar if he did a good job so I said yes. This time I watched him shovel. He puts his entire 50 lbs. of body weight against the adult snow shovel and pushes it until it is full of snow, then tosses it over to the side (he is quite strong for his age, very athletic). His rows/lines are so straight, it's amazing! Chad doesn't even take drink breaks because he loves to eat snow (ack!), though we have tried to stop him for years (yes, we've warned him of various colors of snow). So when he gets thirsty he just bends down and gets a handful of snow to eat! Back to yesterday, he once again did an awesome job! I mean, this kid does a better job than teenagers (we won't name names!). It's nice when he's excited to do it, too!

Tuesday, March 3, 2009

Weekend activities

Last weekend was different for our family! Our oldest two kids, Nick (17) and Alyssa (14), have been raising money for a few weeks for a nationwide event called '30-hour famine' through World Vision. Our family has sponsored a little girl from Bangladesh, Shantona, for at least 6 years through World Vision, and it has been such a wonderful experience. The kids give a portion of their allowance each month to contribute to her care. Anyway, World Vision was also sponsoring this program. Teens in church youth groups around the country got donations (from coins on up) to feed hungry children, and then the kids fasted for 30 hours together. In warmer areas, they actually tried living in cardboard boxes as well. Since Alyssa has hypoglycemia (low blood sugar), we were happy our church decided on a juice fast. The kids did a lot of service projects during their time together as well. Our church's youth group raised over $2000!!

So, on Saturday, we only had our littlest one, Chad (6). This hardly ever happens, but sadly we do notice it happening more and more these days as the teens spread their wings. We ended up going to an event we had signed up for previously with the Utah Hemophilia Association. Alyssa and I both have a form of hemophilia, and this was an education day, plus you got free admission to the dinosaur museum at Thanksgiving Point. We had never been in the dino museum before. Chad had a blast doing all the hemophilia activities for kids. He was a pro at measuring fake 'factor' into a syringe, gave an infusion into a fake vein, and flushed a doll's port. Maybe he'll be a doctor when he grows up! After lunch with the group, we started walking over to the museum, and encountered a huge black Labradoodle (very cute and playful!). The museum was great! It was good for adults and kids. Chad had fun with a sand and water play area for kids, complete with plastic trees and dinos. It was fun to have time alone with him as the focus.

Thursday, February 26, 2009

Foster care inspection passed-whew!

I really don't know why I stress so much about stuff like this. We've been doing these inspections for a long time now. We had our yearly renewal for our foster care license yesterday. It is the same nice lady each year. She checks the same things each year. But for some reason I freak out about it EACH YEAR! I mean, the worst thing that would happen is she would say 'fix this and let me know when it is fixed'. This year is different though. Almost 3 years ago, we stopped taking in kids because I was about to have a major spine surgery. We figured a couple months off, we'd get back into it. Well, then I got sick with this autoimmune disease that had been dormant in my system for years, but the trauma of the surgery caused it to 'appear'! It took months and months of testing (and misery, me thinking I'm just a wimp) before we figured it out). I'm still having all my symptoms, still on medication, but I have been doing it long enough to know how to manage it all. I do need extra rest, and have to stay away from people if I can during cold/flu season so I am careful. The condition is considered 'terminal' (isn't everyone?) with no cure, but I plan on hanging in there for the long haul. So....of course it makes sense we'd start doing foster care again doesn't it?? I do have a unique situation with my 17 and 14 yo home during the day, so that is very helpful. We are licensed for 3, but I don't think we will take that many-my guess is 1-2 at a time. It will be nice for Chad to have a playmate, as that is the age range we asked for. (3-7yo, and then 0-6months). I'm excited about most of it. The things I do not look forward to is if there are lots of court appointments I have to go to, parent visits I have to go to, therapy I have to go to, etc. Sometimes, depending on the case, it can be quite a drain. Our main goal is to help children though. Our older kids, Alyssa especially, are so excited! Of course, let me say if anything started to go downhill or change with my health we would immediately stop foster care and focus on my health, so no lectures!! I am too chicken to tell my Mom, though. Thank goodness she is not in the world of computers.

Tuesday, February 24, 2009

I'm blogging!

February 24, 2009- I'm finally doing this! I've been wanting to/meaning to for some time now. We have a family website, http://www.thelangworthys.com/, that we were going to update frequently but honestly I never did catch on to that one. Jeff handles it, as it is much more technical when you update. Also, I don't like that with the website, each time you update you lose the last entry. With this blog, I'm looking for something I can update quick and easy. I don't have a MAIN plan for what I'm going to blog about, I think a little bit of everything. Mostly I just want to help my mushy little brain remember things going on in our lives, because things are happening fast!!