A Few Happenings At Our House

I have had a few people comment about the fact that I haven't updated our blog in a while.  First I'm sorry, there really is no great excuse for that and I need to get back on it.  We did get a new computer and with any transition its put a few kinks in my routine as far as blogging goes.  I need to get my pictures transfered over to this machine and then I will get back to posting those as well.

Here are the highlights that I will have to come back and do justice to later:

We celebrated the end of school, Charley heads to girls camp, swim lessons, spring soccer, a new babysitting job, fun at Seven Peaks, I am honored to help my friend bring a sweet baby boy into this big world, celebrated 14 years of marriage, and a trip to California.  Lots to update later but here's a hint of what's to come.....

Playing the Numbers Game

Ronny's blood tests came in late yesterday afternoon.  The doctor had originally said that if his pth level comes back over 40 he would be concerned of a second tumor.  Ronny's came back at 44.  In general this isn't considered high but following his surgery it was as low as 25 so it is heading in the wrong direction!  His blood calcium is at 10.2 this level is considered high at 10.3, I believe.  This also should have come down following surgery from what the surgeon told me when he came out to see me after the surgery.  So neither number is technically high but they are on the higher side.  Ronny's body could still be trying to regulate after having the tumor removed, however its been over a month so I'm not sure if I buy that so much.  He wanted to see Ronny back again in August for another follow-up.  If his pth continues to climb he'll most likely be sent back to the endocrinologist for another ultrasound to look for another tumor.  The surgeon thinks that if this is the case the tumor and gland may have moved down into his chest which doesn't make things easier.  So for now we wait.  I do have to say though that we are getting better at this waiting game, not sure if that is a good thing or not though at this point.

Statistics, blah!

Ronny met with his surgeon up at Huntsman today for what we thought would be a simple post-op follow up.  He had blood work done last week with his regular doctor for his thyroid and they ran a blood calcium then.  We noticed the results were still on the high side.  His surgeon had those results today and was concerned that it was still so high.  He said that number should have come down after taking his tumor out.  He is concerned Ronny may have another tumor that he didn't see when he was in surgery.  He ordered more blood work before Ronny left specifically looking at his calcium again and also his pth level.  If his pth level is higher than 40ish that probably indicates a second tumor.  If that is the case Ronny will get referred back to the endocrinologist for another ultrasound to find it and probably another surgery.  He said he will call tomorrow with the results.  He said the odds of people having 2 of these tumors is around 1%.  I laughed out loud when I heard this as we seem to always be in that 1%.  I was a math major in college and I HATED statistics, given all these crazy numbers they keep throwing at us my opinion still hasn't changed!!!  However if we could turn these numbers into something like say the roulette table we could make a killing in Vegas, maybe then we could use that money to pay off all these hospital visits!

Happy Birthday Angel Boy

This day holds many memories for me.  Painful ones but mostly joyous ones as I'm sure September 28th will as well.  I think I will start the tradition of going to the temple on Aaron's birthday, its the place I feel the closest to him, a place where I will always find peace.  Ronny and I have talked a little about the traditions we will start surrounding the important dates of Aaron's life.  We want them to be meaningful not only for us but for our children.  A good friend of mine that lives just around the corner urged me to return to the temple just after Aaron passed and has invited me with her each week.  I am grateful to her for her sincere and considerate reminders to return to the temple. Having her to go with makes it much easier and she doesn't seem to mind my quiet tears and doesn't get frustrated with me when I can't make it work every week.

This year we went to dinner and wrote letters to Aaron while we waited for our food.  We attached our notes to balloons.  Charley asked why we were doing this, Ben told her matter-of-factly that we needed to get them to Heaven and the balloons would take them there.  He was very excited to send his balloon off and sent his a little early but I'm sure it made it where it needed to go.  Later, after the rest of us went to bed Ronny went to the NICU and took a few cases of Diet Coke with him.  I was sporting a major migraine by that point and sent him on his way.  I'm not quite ready to visit yet.  Maybe next year.  He was happy to see one of our primary nurses was charging last night and had a good visit with her.  Earlier in the day I had a good chat with another one of our primary nurses.  It was good to catch up with her and talk about how we were both feeling and how we have adjusted these last few months.  These special ladies that took such great care and loved both Aaron and our family will always be part of us and we think of them often.

Aaron's life taught us a multitude of lessons.  Some by him, some by family and friends, others by those we came in contact with during the journey of his life, and many by our loving Heavenly Father.  As I've gone back and read my postings over the last year, I've started to compile a list of these lessons learned in my head.  I need to start writing them down so I don't forget them.  Recently Ronny purchased the rights to Forwardweroll.com for me.  If you type that in it will also take you to this blog.  Some day I hope to separate these two sites and put Aaron's story and these lessons we learned on that site.  I hope to make it a place for people to get an idea of what life is like while facing the uncertainty of a difficult pregnancy, life with a baby in the NICU, life with an infant that has significant health concerns, and how to live life after they have passed on.  But mostly I hope its a place for people who need an extra helping of hope and love.

Not a minute goes by that I don't think of Aaron.  I miss him desperately and my arms ache to hold him again.  The tears come less often now but when they do come its always at the most random moments it seems.  Yet when those tears come my heart always swells with the joy of having had him here and of the love that we shared with him and that was shared with us by so many.  I think the tears are more gratitude now then they are of grief, at least that is what it seems to feel like.  I love you sweet angel of mine!

Baby Rosemary

My sweet niece is doing much better this evening and my sister Kim is also doing better.  Kim was released today.  Rosemary is off oxygen and my sister is able to nurse her as long as Rosemary's oxygen saturation levels don't drop, otherwise she gets a bottle.  I am not sure when they will do another blood workup but if she continues to do well and her blood work looks better, Rosemary will be released in a couple days.  Thank you all for your thoughts and prayers in my sister's behalf.  I know without a doubt they make a difference and we are grateful for the continued blessing and miracles we see all around us.

Needed Prayers

My sweet sister had a beautiful baby girl last night.  This morning they noticed her temperature was dropping and after some tests found that she is suffering from pneumonia.  She has since been sent to the NICU and will be there for the next few days assuming all goes well.  I don't have to tell you all how difficult it is to watch my sister and her sweet little one struggle through this after our experiences last year with Aaron, nor can I tell you exactly how difficult it is to be the one going through it and my heart breaks for the fear I know she is experiencing, it is overwhelming to say the least.  I do know though that we made it through that difficult time with the many prayers that were offered in our behalf and it is that reason that I ask you once again for those prayers for my sister and her family.

My deepest gratitude,

Denise

Face Time

Ronny left for his big business trip this last Sunday.  He flew to London for meetings then they took a train to Brussels the following day.  The kids have enjoyed doing face time with him on our new computer.  Our older computer didn't have a camera and I don't know that it would have supported face time so we bit the bullet and got a new computer, or new to us as it's refurbished from Apple.  I pretty much let Ronny take care of it and get want he wanted.  Next time I may have to reign him in some as I opened the box to a massive computer!!!  I laughed I told him I didn't think we were buying a TV but it sure feels that way, especially when he tells me it has better HD then our new TV upstairs!

With the time difference Ronny gets online right when the kids are getting home from school.  Unfortunately its about midnight his time which makes for a very long day for him.  I think having the kids be able to see him though makes his absence not so hard for them, although I am sure they will be excited when he does finally make it home.

Ronny has commented on the really rich food and of course the chocolate!  He loves trying new things so I am sure he is in heaven.  He seems pretty wiped out each evening so I know he is busy.  Ronny is a home body.  He likes to travel but only for a couple days unless we are with him.  Usually about the 3rd day he is gone he will start to get pretty homesick, that's usually when I get the whiney phone calls about wanting to come home.  I think with all the busyness and the fact that we severely limit the phone time (as its $1.50 per minute) has helped with the homesickness.  I think the crazy time difference helps a little too.

We are gearing up here for a really busy week starting tomorrow so we won't have too much time to miss him either.  Between soccer, state debate finals, more soccer, and my sister's wedding next week we will be running on overdrive!  If all goes well Ronny will make it home for the wedding, hopefully just in time to help with the kids while I make the cake!

A Quiet Place To Visit

Last Friday I got a call from the monument company saying they were at the cemetery ready to put in Aaron's headstone but were having trouble finding his grave. Trying to describe where to find the plot was proving difficult so I jumped in the car and headed down to show them where he was. What I didn't expect was the flood of emotions that came on the drive down. Of course when I got there just a few minutes later they had found the site. We have been anxiously awaiting this for a couple months now and we are happy it has finally been placed.

Last night for Family Night we took flowers over and showed the kids how the vase on the side works. Visiting Aaron has become a regular thing for our family and now we have a place to put flowers will we come. Anytime we are near the cemetery Joseph will ask if we can go visit Aaron. When I ask the other kids if they want to go the answer is always a resounding YES! I am a little surprised by their exuberance sometimes but whenever we pull in they usually quiet down. Peaceful feelings are always abundant there and I wonder if that is why the kids want to go.

Fun Times

Here are a few photos of things that have been keeping us busy the last few weeks.

Family Nights at the park.

Charley and I were given tickets to the YW general broadcast. We took Trax up and went to dinner afterwards. It was a great experience to go with my daughter and the talks were great!

Evening walks around the lake with Ronny. This one happened to turn into a 5 mile walk but it was nice to get outside and enjoy the sunset together.

And of course the Pinewood Derby. Joseph won the Bear division and Sam came in 4th in the Wolves division. They designed, cut, and sanded all by themselves. Dad helped with the weights, wheels, and paint.

One picture that I don't have is one from the district debate contest. I was busy keeping three boys quiet while their big sister debated the merits of buying local produce. She did well enough that her and her partner will be competing in the State Debate Contest next week. She has done a great job and has been working and practicing this for weeks. We are sure proud of what she has accomplished.

Post-Op

So before I start with the updates let me just say I was NOT planning on taking this picture, Heaven knows I would be pretty irritated if Ronny had taken one of me like this, but he insisted and had it posted to his Google+ account before we left the hospital so I figured it was blog worthy here.

Ronny's surgery went well. Getting his IV didn't go so well. It took 3 tries, lots of oxygen, and lots of extra attention from the nursing staff! I think that was the worst part for him. His tumor was removed and his PTH levels were cut more than in half immediately so Dr. Hunt was sure it was just the one gland affected. He did check 2 others though to make doubly sure. Ronny also had a few swollen lymph nodes which concerned the doctor so he had those biopsied while the blood tests were run. Those came back benign so as far as we know we are done other than a follow up visit. All went smoothly so he was able to come home this afternoon. Ronny is still pretty groggy and is in some pain but he is listening and taking his pain meds and is now sleeping.

He is cleared to go back to work tomorrow although we'll make that decision in the morning. He can't drive and is usually pretty out of it when on prescription pain meds so I get to help make that call tomorrow! The doctor told him he can't run for at least 7 days and then only mild activity after that, the nurse told him mild activity did not include running. He is not so happy about that. Thankfully the doctor wrote that down in the discharge notes so there is no arguing for at least 7 more days on that topic.

Pre-Op

This morning Ronny and I met with Ronny's surgeon up at the Huntsman Cancer Institute. The resident came in first (we know the drill with teaching hospitals!) She was great and so funny. She told us they typically schedule surgery for those with urine calcium levels over 400, Ronny's was over 1000! So surgery is definitely in our future! After she was done Dr. Hunt came in and did everything again and then told us that 90% of these tumors are just on one of the 4 glands but with Ronny's blood and urine levels and history of symptoms he told Ronny that his odds of primary parathyroid hyperplasia (all 4 glands affected) are about 50%. Once they remove the affected gland they will run more blood work while he is under anesthesia (the PTH half life is only 5-8 minutes), if the PTH levels drop a good deal then they know only the one gland is affected, if the levels don't drop then they will know that the other glands have problems as well. If that is the case they will take out 3 of his glands and leave the least problematic one in. The tricky part to taking out 3 of the 4 is that they have to find all 4 which means exploratory surgery and possibly an overnight stay as opposed to coming home a few hours after the surgery and a slightly larger incision.

We asked Dr. Hunt when he would be available to do the surgery as we are right in the middle of a job change and insurance change. Turns out someone canceled their surgery on Thursday so we got the open spot, hooray! Otherwise we would have had to wait until Ronny gets back from his upcoming trip to Europe. I know it sounds kind of strange that we are cheering for surgery this week as opposed to later, but that is just how we play this crazy game of life in the wacky world of strange medical anomalies.

New Adventures

Like I said before, change is a constant in our lives it seems. For the last little while things have been put in place for Ronny to steer a new course in his employment. Ronny's boss and 2 other colleagues from his current company are branching out to try something new and are currently starting a new machine learning company. We've been waiting for a few key pieces of the puzzle to be put in place before saying anything. The announcement has now been made at his current company so we can now share the news. There are quite a bit of details to still work out but it looks like they will be starting their new adventure sometime in the next few weeks. We anticipate there will be more travel involved as it looks like a good portion of the work will be overseas this summer.

Ronny is really excited for this new opportunity and to really put to use all that stuff he learned in the many years of grad school he completed! There is quite a bit of unknown in the months ahead, yet we feel this is the direction we need to go. We've had quiet moments to sit and discuss what lies ahead of us and what changes may come with our family. We know this opportunity wouldn't have been possible to us had Aaron come home (although we would have preferred that), nor could we have done this when our other children were younger. Life is a constant mystery it seems. We know there will be long hours of work ahead for all of us and we are little anxious to get started.

Electives

Charley came home with her junior high registration materials yesterday. I need to make an app0intment for her well check up and next series of booster shots. She is not so excited about that! She also gets to decide on what electives she'll take next year. Its a big decision for her and it seems she is changing her mind hourly. We are letting her choose whatever she wants as we feel she is in need of some "fun" time in her education. We finally got her test scores back from her latest round of ALPS testing, they were sent to the wrong address. Smarty Pants! She's way smarter than I ever was! We love seeing her with her group of friends that she has developed these last two years, they are wonderful girls from great families and I am thrilled most of them will be together through this next phase of life.

Charley is starting her next big project for school. She is writing a 5 chapter autobiography. I'm actually pretty excited about this one and am anxious to see what she writes. She'll be calling a few key players in her life to get some information.

Decision Making

These last few days Ronny and I have found a few minutes here and there to do some research and talk to a few people about our latest medical oddity. We have realized that this tumor is more trouble than first thought. This little bugger is slowly leaching Ronny's bones of calcium and is pumping excess amounts of PTH hormones throughout his body. To prevent serious osteoporosis and other cancers its recommended the tumor get removed sooner rather than later. It seems that this kind of tumor usually doesn't develop until later in life so Ronny having one in his 30's is less common in a not very common disorder to begin with, hence the excitement by the endocrinologist. Surprise, we win the prize once again! We are once again fortunate to have caught it now as opposed to later when it could have caused more serious problems. We'll be calling the recommended surgeon this week and scheduling an appointment.

This frequent flyer hospital plan we seem to be on is getting really old, not to mention really expensive!!! Yet, as things continue to crop up we find that we deal with each new hurdle much differently than we did just a few years or even a few months ago. We tend to laugh more about these diagnoses, which we notice tends to unnerve some and baffle others. The humor gets us through the time we are convincing our bodies the adrenaline and anxiety levels shooting through us needs to calm down. We are grateful to have had time to stop, think, research, and pray for guidance ahead this time. For so long we were making huge medical decisions at warp speed that we weren't able to pray for guidance before a decision was made, our prayers were more pleas for peace that we did the right thing as it was happening.

We find ourselves overwhelmed with gratitude once again by those of you who have continued to keep our family in your prayers, helped with blessings, added our names to the temple rolls once again, and offered words of concern and encouragement. We continue to feel the Lord's love and strength as we wade through our next hurdle.

"Its not a tumor".... Actually it is!

Ronny's results came in this afternoon. His thyroid cyst is benign and the doctor recommends he have it looked at again in 6 months. The other mass is a parathyroid tumor and his blood calcium level is elevated however only slightly. The doctor recommends he have it removed. Ronny is going to talk to a few other people and get their take on things before he calls the surgeon's office.

The results of the cyst were as we suspected, the tumor on the other hand was completely unexpected. I don't think either one of us are ready to jump into another surgery or another hospital visit. It certainly doesn't look like this is something life threatening so we'll gather as much information and get a few other opinions before making that decision.

You Just Have to Laugh!

Ok, so this morning Ronny finally had his biopsy. He had a very nice doctor who had a chart explaining all the possible outcomes of what the results would be and explained everything that would happen in the procedure. We were taken back and he looked around on the ultrasound. This time the cyst looked different, lots more fluid and the mass we saw so clearly before was hard to make out and this doctor wasn't sure if it was even there anymore. He scanned around and then got real excited about a new mass that he first called a parathyroid tumor or a very swollen lymph node just outside the thyroid. He thinks its a tumor which he said was almost always benign and probably was causing Ronny's kidney stones. He said he would know after he got a blood calcium level. (When I say he was excited, I really mean it, he was like a little kid opening presents on his birthday!)

So then he started the procedure. He first gave Ronny the numbing medication and told Ronny that would be the worst of it. Ronny was doing well up to that point. Then he put the syringe in to draw the fluid, he was moving it around quite a bit and struggling to pull the fluid out. At that point I looked at Ronny's hands and noticed they were whiter than the sheet. Then the nurse felt his skin go cold. Then the doctor released the end of the syringe and it snapped back like a rubber band. (I guess the fluid was crazy thick!) Then both the doctor and the nurse were asking if he was ok and Ronny started to tell them he was really sick to his stomach. Then the doctor asked if he was still with us and told the nurse to go get the oxygen. (At this point I am thinking I should have told them before they started about Ronny not doing well with needles, oops!) Both the doctor and nurse looked to me to try to reassure me he would be fine while I was trying not to laugh and assured them that I really was not worried.

The doctor was not able to get as much fluid as he wanted because it was soooo thick and that Ronny was about to pass out, but he had enough cells for one slide. He then told Ronny that next time they will sedate him. At which point I said, next time????? You could tell at this point the doctor really wanted to get a blood calcium but wasn't sure Ronny could handle it. That's when I said, well he already has the oxygen and he's laying down, you might as well do it now, so they did!

So depending on what the results are, Ronny will either have the affected lobe removed (worst case scenario), or they will do nothing and have him come back in 3 months to do all this again. He wanted to drain the cyst completely but the fluid was just too thick for the size of the needle they were using. If they decide to have him come back in 3 months they will sedate him, (he really freaked them out this time!). If his blood calcium comes back high they may decide to remove the new mass they found today. Leave it to us to come in for one thing only to leave having something else entirely to test. The doctor told us again that only 4% of these cysts were cancerous, I told him our family was really good at meeting the low odds. Of course then we had to explain our uncanny ability to find all things rare.

We should have the results sometime in the next week and a call from the doctor to tell us what the next steps will be. So now we once again get to play the waiting game. Both Ronny and I were laughing and keeping things as light as possible, I don't think they knew what to do with us.

Random Photos and Updates

(Charley passes up Nana in the height department!)

I finally downloaded my camera and both our cell phones and realized how far behind on updates I am. So here are a few photos and updates to try to catch up, they start with the oldest and end with the newest.

Ice Skating

Our 1 day of sledding this season. (Can't say I'm too sorry about the lack of snow thus far!)

Charley was a troll in her class play.
(Hands down the cutest school play I've seen so far, and I have seen my fair share!)

Family Sports Nights watching lots of BYU Men's Volleyball. Of course our boys insist on dancing in the half time competition. Sam even has his own following now, believe it or not he has been recognized at places around town as the boy in the green shirt dancing his heart out! We are encouraging him to try out for Cosmo when he goes to the Y!

We always hit Krispy Kreme on the way home after each game.
We love it when the HOT light is on!

Mom loves it when she turns around to see all 4 asleep on the way home.
How often does that happen???Off track swim lessons. While waiting for his class Ben enjoys dancing to the water aerobics music and puts on a good show for the ladies!

Indoor soccer for all 3 boys and another season of coaching for Dad! We are knew to the indoor soccer season and so far we are loving it! Especially when I think of how cold it is outside!

Blue and Gold dinner. Joseph's cake is the spaceship on the left and Sam's is the Lego Star Wars crash landing and battle on a planet of course. They both enjoyed designing and frosting their own cakes. I should have taken a picture of my kitchen afterwards, it was pretty scary!

Joseph earned his Bear!

Ben turns 6!!!

I'm sure I missed quite a bit in pictures, like Charley playing church basketball for example and the many phone calls for babysitting she gets every week, but I'm thankful for the ones I have and am amazed at how well my kids have adjusted. They are amazing and soooooo full of energy. I think about everything going on in the next 2 months and know that life sure isn't slowing down.

Forward we roll!

Come Listen To A Prophet's (or apostle's) Voice

Friday the boys started their swim lessons. Ben's lesson starts 45 minutes after the other boys lesson so we were sitting on the bench waiting his turn. A water aerobics class soon started and music starting blaring through a portable speaker. Not willing to miss an opportunity to dance Ben jumped up and put on a show for the next 20 minutes. The ladies loved it and cheered him on. It was pretty funny watching him shake and shimmy in his swim trunk. Later that night Joseph had another soccer game and then we headed down for another BYU volleyball game.

Saturday morning started with more soccer, then Ronny and I were able to find some time to have a nice walk around the lake. On our walk we talked about Stake Conference that we would be having and I told Ronny I hoped and prayed it would be uplifting. The last few days were pretty emotional and I really needed some nourishment for my soul. Boy was I overwhelmed with the answer to that prayer! We were fortunate to have Dallin H. Oaks visiting as well as Elder Clark (I believe he's a regional authority). Elder Oaks is one funny guy and left us all uplifted Saturday night.

This morning Ronny and Joseph headed over an hour early in hopes of getting seats somewhere in the cultural hall. The rest of the kids and I headed over about 20 minutes later. Just after getting settled I looked up to see Elder Oaks coming down the aisles shaking hands with those in attendance. I whispered to Charley that Elder Oaks was there and that he was an apostle. She was out of her chair in no time wanting to shake his hand. I turned to the boys and asked if they would like to shake his hand as well. I walked them over and Elder Oaks shook their hands and then he pulled them into a great big hug. It was so sweet and tender and with tears in my eyes I shook his hand and thanked him. I hope they will never forget this experience, it certainly won't be something I will.

For the life of me I can not remember another conference where I left with so much joy. It was truly an uplifting meeting. When Elder Oaks rose to speak our kids immediately quieted down and listened (first time ever we didn't have to ask them to be quiet!). When we were leaving Joseph came to me and told me he really liked the speakers, especially Elder Oak's talk. I don't know if its because he is an apostle, or if it was because Joseph got a hug from him, or if he told good stories, or if the spirit was overwhelming, but what a great conference, especially for my kids! Hopefully they will be just as excited with General Conference in a few weeks.

A Few Quick Updates

We thought Ronny would have his biopsy at the same place he had his ultrasound, unfortunately that is not the case, he has to go up to the University campus to do it. Thankfully he doesn't have to go to the hospital to have it done, just in an offsite facility in the research park. Driving that same drive we did last year is still difficult but having to go back to the hospital right now wouldn't help my sanity. They couldn't get him in until March 21st so we get to play the waiting game yet again.

Sam and Joseph made a trip to the orthodontist. Joseph got pushed back another 10 months (can't say I'm sad about that!) Sam got his first orders for teeth extraction and gets to come back in 6 months for more to be removed. Charley had an appointment today and is starting the widening phase. She is not such a happy camper right now and came home begging for the tylenol. She'll be sore for a while but is happy she doesn't have to go back for 10 weeks.

The boys had their blue and gold dinner this week and Mom got to help make 2 cakes, a flying saucer and a planet with a Star Wars battle, I'll post pictures later. Ben is turning 6 next week and I need to get a party planned!

The kids are off track and will start swim lessons this week. The last 2 years have not allowed us to do this for all kinds of crazy reasons so we are starting early to be ready for summer. We are determined to get our full dose of Vitamin D this year!

Blood Test and Official Ultrasound Results

Ronny's blood tests came back showing he has hypothyroidism (under producing thyroid). The doctor asked if he had seen hair loss, weight gain, dry skin, and a few other symptoms. All of which have happened but all of which could also be contributed to getting older or coming off a mighty stressful year. Ronny was awarded a new prescription that he'll most likely be on indefinitely. The mass measured 1.2 cm officially which put him in the need to biopsy category. The first ultrasound measured it as .9 cm which I believe still puts it into the margin of error but something to think on nonetheless and a question of is it getting bigger? I asked the doctor if cysts like this or cysts that are cancerous usually resulted in hypo or hyper thyroids. He said they usually would result in hypo thyroids. Not exactly the answer I was hoping for. Ronny will have his blood work redone in 8 weeks and they will also test him for a few autoimmune diseases as well. An ENT will actually be the one doing the biopsy so we are waiting to hear when they can get him in. The doctor said he still doesn't think its something to worry about, however in my book he becomes less convincing with the more tests he orders. Just saying....