We're Trying!

Family Home Evening went kind of like this today:

* Gather everyone into the scripture  room. 

* Fighting begins over who gets to sit where. 

* Opening song. 

* Opening prayer. 

* Everyone plays a piano piece starting with Annalise who plays and sings a song called The Birthday song.  Adorable.

* most other songs consist of a few grumpy pounds on the piano

* Fighting over who sits where continues. 

* Start discussing family business. 

* Complaining begins about how unfair life is at our home. 

* Continue business. 

* Discover Annalise needs to be changed.

* Sit on the floor to start changing process as certain boy gives his opinion of how things should happen around the house. 

* Look up and realize that there is projectile vomit coming toward us from Bryce as screaming begins.

* Grab big brothers shirt that he took off minutes earlier to catch the puke.  (Sorry Spence)

* run to Bryce while daughter freaks out because she has puke on her shirt and arm.

* Send one boy out to get towels, one boy to get the suction machine, and one to get the wedge.

* Suction Bryce.  Pray that the vomiting stops soon and that he does not aspirate it.

* Dad, Bryce, Annalise take shower and/or bath for the second time. 

* Switch the peed on sheets from the night before (now clean) from washer to dryer. 

* Clean chair, floor, towels, and clothes that were in puke’s path. 

* Start another load of laundry filled with items used for cleaning and soiled clothing.

* Clean suction machine.

* Get Bryce situated again with towels under and over him and suction machine close by.

* Gather everyone around again. 

* Complaining begins about being hungry.  (We had lunch right before we began the first time)

* Start lesson. 

* Annalise bursts into tears while signing that she is hungry. 

* Start lesson again.  Fussing/complaining continues.

* End 60 second lesson.

*Sing (some sing, some cry, some sit while looking grumpy)

* Pray

* send everyone out to find something to have as a treat

I sure hope we get points for trying!

Ah…now on with the rest of our day of rest!

Annalise

It has been far too long since I have written an update on Annalise.  I think that I have been waiting until things in her progress changed for the better, but reality is, the last few months have been very tough on her and we are still waiting for the change for the better.  Maybe by writing out all that she has been going through will help turn the tide!  It's worth a shot!

Annalise appears to have gone through another phase of regression.  She has been sick multiple times over the past 6 months and with each illness it seemed like she moved a little bit further away from where she was.  That usually happens when they get sick, but most times it is temporary and although it takes a long time to recover, they often make it back to their past normal.  This time she just doesn't seem to be bouncing back.  We seem to be dealing with a new normal. Some of the things we have noticed are:

--Increased spasticity in both her upper and lower body.  She is so tight much of the time.  Lots of stretching, massage, and oils help with some of the increased tightness and the pain that comes with it. 

--Probably the biggest thing is her increase in fatigue.  She gets tired/runs out of energy so quickly.  Where she used to be able to walk in her walker most of the time, she is only able to go short distances now without getting so tired that she needs to be carried.  She is spending a lot more time in her wheelchair now then she has ever had to.  She gets tired when she is trying to hold herself up in her chair to eat.  As always though, she has good moments and bad moments.  She still has times throughout most days when her voice is strong and clear, or she is able do more.  We love those moments!  It's just that those moments have gotten a bit shorter and fewer and farther between.

 --decreased strength throughout her body.  When crawling, her arms often give out from under her and she ends up falling onto her forehead.  It's kind of  hard to explain, but her crawl now consists more of just sitting back on her legs and slowly pulling herself forward with her arms while scooting her backside along. Honestly, she doesn't do a whole lot of crawling anymore.  She has gone more to lying on her stomach and pulling/wiggling herself forward whenever she is out of her walker.

--Considerably more scissoring of her legs.  She can hardly walk more than a step or two now without her feet getting tangled.  She has to stop and really focus on getting them apart so that she can keep walking.  It appears that this is more of an issue with her hip rather than her feet and very possibly being caused by her increased spasticity and decrease in strength.   We have spoken with multiple doctors about this over the past few months and multiple times I have heard "it looks like progression of the disease.  There is nothing more we can really do about it at this time."  

Like always, I wasn't really okay with that answer so I started talking with therapists and other moms.  We have found a new type of AFOs that are more flexible and that seem to be helping some.  We are currently looking into a brace (and hoping it will get approved by insurance) that will give her hip some support and help keep her legs separated when she walks.  Hopefully that will make things a little easier and less frustrating for her. 

--The end of January, Annalise had a swallow study done.  They did not see any aspiration, but they did see some penetration which is when the food or liquid goes into the trachea and stays above the vocal cords.  Our GI was concerned about this because if they see penetration during the few minutes of a swallow study, it is possible that there is some aspiration going on as well.  Annalise did have pneumonia this year and does have trouble with getting dehydrated quickly...both of which can be signs of silent aspiration. 

--Annalise has had multiple fits of uncontrolled laughter and/or crying.  It seems to be most evident right after she has been sick.  When I first noticed it, we just thought she was being silly...because she does have those times.  However, as it continued on for about 3 days that time,  and again a few weeks later when she had been sick again, it appeared more and more that it was happening at odd times and places and that she did not seem to have control over it.  After "laughing" for 3 days, she spent about a day and a half having "crying" episodes.  Again, they came at odd times and did not seem to be controlled by her.  After seeing this happen multiple times, I spoke with her neurologist who decided to order an EEG with hopes of ruling out seizures as the cause.

So in April, Annalise had her first EEG.  Although it showed no seizures, the EEG results came back abnormal because of some "slowing of the background".  Dr. Narayanan also said there was a "fair amount of electrode artifact throughout.  But there were times when she had a nice 9 Hz background rhythm".   I still don't completely understand what that means so I will be talking more with him about that this week.  Either way, it looks like the laughing/crying fits are not due to seizures, so why that is happening is still an unknown.   There really are so many things that are still unknown. 

I think those are the major changes we have seen.  Less then a month after the wonderful miracle we saw of  her taking a few independent steps, she got sick and has never completely made it back to her normal.  I have not given up hope that she will be able to take steps again, but as of now, she is no longer able to even stand independently at all...not even for a few seconds.  It is so frustrating to see how long it takes for her to gain these milestones and then how quickly they can be lost again.  So frustrating!

On a positive note...Annalise is one tough little fighter!  She is so determined.  She is independent in every way she possibly can be.  She lives life to the fullest that she possible can and does not seem to want  to waste one minute of it.  As some things become harder for her to accomplish, she figures out other ways to get what she wants/needs.  She is not going to give up this fight easily.

Her imagination is still going strong.  She comes up with some of the funniest and most creative things.  She is beautiful and continues to grow taller and taller.  She often talks about swimming with dolphins and living in a castle.   When I get her up in the morning, she loves to tell me all about the dreams that she has...her latest one is a dream where she is swimming with a pink dolphin.  :)  Overall, she is a happy!

 

Although it hurts my heart to see my baby girl struggle, it makes my heart happy to spend every moment I can with her.  She is the joy of my life, the princess of our home!

CP Clinic

Yesterday, I took Bryce to the new Cerebral Palsy Clinic at Phoenix Children's Hospital.  The Orthopedic Surgeon that has been seeing our children over the past 5+ years started this clinic because he wanted to be able to give children better care, in other words, be able to spend more time with each individual child then he is able to in the clinic at CRS.  This is where we have seen him in the past and honestly I dreaded every appointment with the ortho clinic there, so I was excited to check out the new clinic at PCH.

Since it was our first visit there, and Bryce needed quite a few "upgrades"  we ended up being there a little over 4 hours.  Usually, I would not be happy about spending that much time for one appointment, but today was different.  Today, all but about 1/2 hour of that time was actually productive.  With the help of the PT/OT team there, we were able to get him fitted and casted for much needed new AFO's and hand splints.  We also got scrips for other equipment that he has been needing at home.  With children like Bryce and Annalise whose needs/abilities vary so much and so often, we need people who understand their needs and who know how to deal with insurance and other companies to help us get the things that they need.  Today I honestly felt like I was able to work with some of these people.  I feel like they listened to me and took the time to work with/get to know Bryce a little better so that they could know what he needed.  It was a very nice change.

 After that, Bryce got x-rays again of his hips which he does every 6 months because of  the hip issues he has.  This was the first time that Bryce did not cry, due to fear, during his x-rays.  I'm so proud of my brave boy!

Then it came time to meet with the doctor.  He and his nurse came in, sat down, and talked with us while checking Bryce over for about 30 minutes.  30 minutes!  I have never had an orthopedic doctor spend more than about 5 minutes with us.  The only bad part was the news that he had for us.  Bryce's hips have gotten bad enough that he is going to need complete hip surgery within the next 6 months to a year.  :(  We have known for a long time that this day would eventually come, but I really wasn't ready for it now.  I guess I never really would have been ready for it though, so it is what it is and we will think about our options, pray about it, and make some decisions.  The doctor did say that Bryce's case was one of the best he has seen as far as the amount of time that the adductor lengthening surgery  kept Bryce from needing full hip surgery.  The plus about that is that the older Bryce is when he receives the hip surgery, the less likely he will be to need another one later in life.  At the age of 8, which is about where Bryce will be when he has this surgery, there is only about a 5-10% chance that he will need it again later.  I hope and pray that he will be one of the 90-95% that will not.

It was a very long day, especially for Bryce, but he did so well!  When we were finished though, he was very ready to get out of there.  So while Bryce was briefly mesmerized by the dancing flower lights on the wall, I made a quick call to be sure our older boys had made it home from school and that they and their dad had begun their trip to the Father and son's camp outing.  I then grabbed some lunch at the cafeteria (it was 3:45 by then after all), and headed back to the Ryan House with it where we will be staying for the weekend.  It was so wonderful to only have to drive for about 5 minutes to get "home" instead of our usual hour and then to have many people here to care for Bryce and Annalise so that I could go into my room and process everything that had happened at the clinic visit.   We are so very blessed to have this home so close to us.  The third one in the US is being built now and my hope and prayer is that someday there will be respite homes like Ryan House throughout the United States. 

In Like a Lion...

...out like a lamb.  That's what they say about March right?  As you know from my previous posts, March came in as a very rainy, wet, powerful Lion.  Today, it is leaving as a beautiful, breezy 82 degree Spring day lamb.

However, I know now that they were just talking about the weather.  In every other way, March 2014 has come in like a lion and that lion seems to want to linger here just a little longer.  When I look back at all that happened during March, it is hard to believe it was only 31 days long.  In addition to the Cultural Celebration and Gilbert Temple dedication, we had many plans for March including a 5k run for Ryan House (which didn't happen due to issues with Plantar Fasciitis), and fun Spring Break plans.  Somehow things turned out a little differently than I had planned.  Not all bad, just different.
 
I guess I need to go back to a few days before March began.  The lion was on his way.  I had no idea what was ahead.  Jacob had brought a note home saying that he had failed his hearing tests in both ears and needed to be taken in to be seen by an ENT.  So we made an appointment with our favorite ENT and discovered that Jacob had fluid behind his eardrums and a significant hearing loss in both ears, although much worse in the left ear.  No wonder he always talks so loud!

What I loved about this ENT and the way she handled the situation, she didn't immediately suggest ear tubes again, although that would probably clear the issue for the time, but instead she worked a little bit to discover what might be causing so much extra fluid.  We finally figured out that it might be due to reflux.  Yes, reflux!  I had no idea that could cause hearing loss.  So anyway, long story short, we spent the month of March dealing with his reflux issues in an attempt to heal his hearing loss.

It worked!  Well, mostly.  He still has slight hearing loss in both ears, but since the fluid is gone and the hearing loss is equal in both ears, the ENT believes that is just Jacob's normal and that he has had a slight hearing issue for a while.  So we were sent home with a note for him to take to his school to let them know that he does have an issue with his hearing and needs to sit near the front of the classroom.  He hears about as well as an adult does instead of where a child his age should.  His ENT also wants us to see a GI doctor to be sure there isn't some other issue causing the reflux.  I still need to make that appointment. 
 
From here, I have no idea how to continue with this post, so I think I will do it mostly with pictures.  I may expound further in a future post, but I am not going to promise anything since I may not even get a chance to get back on here for another month.  Anyway, hold on to your hat.  This could be a long one.  Here we go...

 

March 4th was National Pancake day and since all of our children, except Spencer, were home with sore throats and fevers that day, he and I decided to make a quick trip to Ihop while we were out running a couple of errands.  It was fun going out alone with Spencer, but we probably should have skipped the pancakes.  About a half hour after eating them, he said he was feeling bad.  Within a couple of hours he threw up.  Spencer has some issues with something in certain processed foods.  I don't know exactly what causes the problems, but we have discovered certain things that cause him issues that he describes as "I just feel bad".  They cause him stomach pain within about a half an hour of eating them, he becomes an emotional wreak, and just feels bad for a while after.  Ihop pancakes (or maybe it was the syrup) have been added to that list!

One thing that seemed to plaque our family during the month of March was strep throat and issues associated with it.  When I went to pick Annalise up at school on Monday the 3rd, her teacher said that she had been really fussy ever since lunch.  On the way home, she just kept telling me that she was so tired and that she wanted to sleep.  She cried most of the way home.  When we got home, I layed her down in her bed and took her temperature.  She was running a fever of almost 102 degrees.  William and Jacob also came home that day not feeling well.  Bryce didn't really seem himself  Tuesday after school and ran a low grade fever that night.  Wednesday I kept everyone home although the boys seemed to be feeling much better.  We bought Frozen off of Amazon and watched that together.  Thursday morning the boys were all feeling fine and Bryce's fever was gone, so they all went back to school.  During the night, Annalise's fever had risen to over 103, so I called her doctor and made an appointment to take her in. 

When I arrived at the pediatrician's office, the front desk person looked at the schedule and told me that Annalise's appointment had been scheduled for the next day at 1:40.  Okay, I may have misunderstood when I called in that morning, but I swear, I was not told that it was the next day.  Interesting thing is that while I was sitting there discussing what we were going to do, another lady came in with her son and discovered that the same thing had happened with them just with another doctor.

I was not happy about the mix up, but what happened next infuriated me.  The front desk lady had gone back to see if the doctor that was there (not our regular pediatrician) would be able to fit Annalise in.  She came back and let me know that the doctor was totally booked for the day and I would need to just come back the next day.  Okay, fine.  I figured I would just take Annalise to urgent care if I needed to.  Then the doctor came out.  She looked at her schedule and said that although she was totally booked, she would see Annalise if I could bring her back at 4:30.  She than looked up at Annalise for the first time and then at me and said,  "Why did you bring her in anyway?  She looks totally fine to me."

I was so upset.  I couldn't believe a doctor would say that to the parent of any child, much less one she knows nothing about. I mean seriously, does she think we just bring our children in to the doctor for the fun of it?!  I was so frustrated by that point that I was almost in tears.  I fumbled over my words as I told her that Annalise had been running a fever for 4 days, was up most of the night before, and that she is medically fragile due to an underlying condition, etc.  Just because she "looks" fine now doesn't mean she will in 5 minutes!  She repeated again that she would see Annalise at 4:30 if I wanted her to.  I told them to just leave the appointment with our regular doctor for the next day and I left. 

Annalise slept most of the rest of the day and was in pain through the night.  I took her in again to our pediatrician on Friday.  She took one look at Annalise's throat and said, "I bet it is strep!"  She then lifted her shirt and we saw a rash spreading over her neck, chest, and stomach.  It had not been there before I came in.  She left with the strep test and came back within minutes stating that it was positive.  On top of that, Annalise had an ear infection.  It made me so mad that the doctor the day before couldn't take 2 minutes to look at my daughter and save her 24 hours of pain!  I did let our doctor know what had happened the day before and she was very upset about it.

Once the doctor discovered that Annalise had strep and that the boys had not been feeling good a few days earlier, she said that I should have anyone with symptoms get tested, even if their symptoms were gone.  So I went home, picked the boys up from school and headed back to the office for strep tests.  Bryce tested positive, but William and Jacob tested negative.  So Bryce and Annalise started on Antibiotic and we figured that the other boys just had a virus of some sort.  I had also begun to not feel so well the day before, but my symptoms were more like a cold which was what William and Jacobs seemed to be.

Well, on Tuesday of the next week I got a call from the doctor's office telling me that William and Jacob's cultures had come back positive, so they did indeed have strep and were still contagious.  Great.  They had been back at church and school between that time.  I was also still not feeling well so I decided I better go get tested just to be sure.  Sure enough I too had strep, with an ear infection to boot.  My ear hadn't even be bothering me!

So, by Tuesday the 11th we had 5 out of the 7 of us with strep.  Two days later, Spencer woke up saying he really wasn't feeling well.  He just said that he hurt all over, not a sore throat or anything, but I decided I better take him in just to be sure.  The doctor said it didn't really look or sound like strep, but she swabbed him for strep as well as the flu.  They both came back negative.  That is until Monday the 17th when I got another call from the pediatrician's office stating that Spencer's culture had come back positive.  So just as Bryce and Annalise were finishing up their antibiotic, Spencer was starting his.  At one time, we had 6 out of the 7 of us on antibiotics and going through oils like crazy.  John was the only one who escaped the strep bug.  This was the first, and hopefully last, time in my life that I have had strep.

I don't know what it is, maybe that she becomes so pale when she gets sick, but I always think she looks extra beautiful when she starts feeling better and that natural color/beauty comes back into her face.

Spring break was from the 10-17 of March this year.  Since we spent most of it sick, we didn't get to do a whole lot.  Friday morning though, everyone was feeling good and I had some passes to airworx, a trampoline fun center, so I decided to take the 3 older boys for a little exercise/fun before their break was over.  The boys had a great time, but our time was cut short.  About 45 minutes into the fun, William came over to me and was having a horrible asthma attack.  One of the worst I have seen him have.  He doesn't have them very often anymore so of course he hadn't thought to bring his inhaler and I didn't have any of our oils on me either.  So, we had to grab the shoes and head for home.  Luckily we made it home without having to make a quick stop at the hospital which I was seriously considering at one point.  He took a breathing treatment and was fine.

April 23---Ah, look at that, 23 days have past and I am finally back here to finish this off.  If you have made it this far, you may want to take a break and get a drink of water or a snack or something.  I totally understand.  If I hadn't already added all the pictures in for the rest of this post, I would just end this here and finish the month off in another post.  However, they are here, so I am going to continue with my extremely long blog post.  Hope you enjoy!

Just a couple of adorable leprechauns ready for St. Patrick's day.

March 17th is also my neice Maisey's birthday.  We had just a little family party for her that night.

Bryce's 2 front teeth finally began to come in.  I was beginning to wonder if he had any permanent teeth up there.  I guess it takes a little longer for them to come in when the baby ones get knocked out instead of coming out on their own.  :)  Although I am glad that his teeth are coming in, I am really going to miss his toothless grin.  I love it!

The day Bryce finished his antibiotic he began running a fever and was up most of the night.  So I took him back to the doctor to see what was going on.  He now had an ear infection.  The antibiotic he was on had obviously not helped this, so he began another type and more oils.  

  About a week later he came home from school and just cried and cried.  He was in pain again and during the night I noticed that he had some drainage coming from the same ear, so back in to the pediatrician.  She said that it was hard to see the eardrum because of all the fluid, but that what she could see looked better telling her that the ear infection had cleared up.  However, because he was still in pain and their was so much fluid in the ear canal, she said that most likely one of two things had happened.  Either his eardrum had burst (she couldn't see the eardrum well enough to know for sure) or the fluid from his ear infection had settled in his outer ear tubes and he now had an outer ear infection.  Treatment was the same either way, so we left with a prescription for some medicated ear drops.  It took a couple of days, but that seemed to do the trick and Bryce has been okay since then. 

Like most girls right now, Annalise is a bit obsessed with the movie Frozen.  Here she is making Olaf out of her Dutch Babies breakfast one Sunday morning. 

What do you do when walking becomes too hard for the day, you crawl. What do you do when getting up to crawl becomes too hard...you scoot. One day toward the end of March, I was in the kitchen making dinner and I heard Annalise making some noises. I looked over to see her pulling herself along the tile. When I asked her what she was doing, she said that she was trying to get to me. I asked her why she wasn't crawling and she said that she couldn't get up so she was just scooting to me.  :(   It about broke my heart!  

Annalise has been struggling.  I am working on a blog post in Bryce and Annalise's blog that will explain in more detail what has been going on with her lately, but I will just say that she has become very weak.  Although her illness is gone, she just doesn't seem to be getting "better" yet.  The doctors that we have been working with all seem to think it is progression of the disease.   I'm still hoping and praying it is not!

One very exciting thing that happened in March was that we got a visit from one of Bryce and Annalise's favorite Physical Therapists, Tess!  Tess was Bryce and Annalise's PT for a couple of years.  We love Tess and it was so exciting to see her.

It is really fun because Tess was with us when she became engaged and got married.  Now she is having a baby!  It was so fun to see her as a cute little pregnant lady.  Charlotte Rose Rials was born on April 15th.  Hopefully we will get to meet her one day soon as well.

March was a big month for Spencer.  On the recommendation of our dentist, I took Spencer to see an orthodontist.  I have always been opposed to getting kids started with Braces early, however after talking with the orthodontist for a while, I understood that it was very important to start work on Spencer's teeth right away. 

He has an underbite which was causing his bottom front permanent teeth to be pushed loose.  An even bigger problem though was what was going on up top.  His bottom jaw is shaped in a semi-circle as it is supposed to be.  The top jaw however is more of a semi-oval.  To make a long story short, if we did not do anything about this now, it would end up with Spencer needing jaw surgery a few years down the road.  We were told that to avoid that, they try to get these issues corrected before the children are 10.  Spencer will be 10 in July!  He will have his extra metal for about 18 months. 

There were a few really wonderful things that happened in March.  My Aunt and Uncle from Virgina were in town on business.  We went out to dinner with them one night and then the morning they left to return home, My parents and I met them for Brunch.  We had a very nice visit with them.  It was great for our boys to get to know them a little bit as well.  After spending time with them, Jacob kept saying, "they really are nice people!" 

For the brunch, we tried to find a place close to the airport.  We ended up going to a little place called Morning Glory Cafe.  It was a little place in the middle of a working farm.  We sat outside and ate while we talked until they had to leave for the airport. 

Bryce finally feeling better and doing a great job sitting up!

John's company had their annual company work party.  They had a petting zoo which Bryce and Annalise loved! 

 

Annalise got some new AFO's!  Her old ones have not really worked for her in months.  This is a new style that is a bit more flexible and we are hoping that they will work a bit better.   She picked out the style which is an ocean scene on a purple background.  She is very in to dolphins and other water animals right now. 

There are a few other things that happened in March that I do not have pictures for.   I went in to see about getting a sleep study done.  I snore and it has been bothering John.  I haven't done anything about it for a while because I am sure it is because of my weight.  If I could just lose some weight, I think that issue would be solved.  I am tired all the time and have had some close calls on falling asleep at dangerous times, so John finally talked me into going in and seeing about doing something about it.   Since I have let some of my bad habits slide back in to my life over the past 6 months or so, I know that the issues I am having are most likely weight and unhealthy died related.  I just have to do something about it!  I didn't want to see a doctor that was just going to throw pills at me, so I searched out a functional medicine doctor in our area.  In addition to setting up a sleep study, he took a bunch of blood work.  Ends up that my vitamin D is extremely low, I have prediabetes, and my thyroid is not functioning as well as it should be.  All things that I believe I can reverse if I cut the sugar and processed food back out of my diet and get back to eating the way I know I should be.  I've done it before (at least for the prediabetes).  I wish that was easier done than said!  

--A good friend of ours had a Mary Kay fundraiser for us.  We met a lot of new people and had a wonderful time.  There really are some great people in the world!  Thank you Luhanna and Linda!

--William had not gotten to see the Lego Movie with us when we went with Hope Kids, so one night, as an early birthday present, he and I went on a little date and went to the movies together.  He is getting so grown up.  I just love that boy!

--March brought the very sad news that one of Bryce and Annalise's caregivers was moving to Texas.  Her husband got a job there and they would be leaving in April.  Robyn has only been working with us since November, but in that short time, she has become more than a caregiver for our children.   She has become a very close friend of mine and a true part of our family.   She will be very, very missed!

--We also found out that my Dad's cancer has returned.  Only this time it is in his liver.  As far as cancers go, it is probably one of the best because it is a slow growing one and often does not metastasize in a person's lifetime.  The issue with it though is that this type of cancer does not respond to chemo and so he will be getting it cut out.  Also, the fact that it is back, means that it has metastasized.  Luckily he will be able to get treatment here in Arizona at MD Anderson.  

--In March, John and I also attended a free gardening class that was offered at the church.  We spent six hours one afternoon learning all about Mittleidter gardening.  It was very interesting, we learned a lot, and would really like to get a working garden started.  

--We continue to enjoy hearing all about and seeing pictures from John's parents as they continue to serve their mission in South Africa.  It sounds like they are having quite the adventure. 

--The month ended on a great note as I was able to attend the broadcast of the General Women's Meeting  and our ward Conference.  They did something different this year by inviting all women/young women ages 8 and up to the broadcast.  It was wonderful.   Both meetings brought the spirit to me and gave me that little bit of peace and hope that I needed to continue on into April!  

I am finishing this post on April 28th at 1:00am.  It's only taken me a month to complete it.  :)   April has been another crazy month.  Hopefully we will see signs of that calming lamb soon!

Fashion Show Fundraiser

March 15th!  It's less than a week away!

I have to tell you, the goodness of people never ceases to amaze me.  A while back I got a call from my friend Luhanna Chesley.  She said that she, and her Mary Kay director, Linda Christenson, want to do a Mary Kay Fashion Show Fundraiser to earn money for Bryce and Annalise.  Linda is from California and will be coming to Arizona on March 15th just to do this fundraiser for our children.  She is also planning to do one in California as well.  Here is the information on the one here in Arizona.   We will be there with Bryce and Annalise.  Anyone and everyone is welcome to come! 

When:  Saturday March 15th at 1pm.

Where:  8220 E. Garfield St.  Scottsdale, Az.

Cost:  $10 at the door.  

There will be an awesome door prize, and other raffle prizes to be won!

The audience will be the judges, so we need as many people as possible to help cheer on their favorite model.  

I wasn't sure what to say when Luhanna approached me about this fundraiser.  It's a pride thing I guess, but it is hard to accept money from other people and to know that they are putting so much of their time toward helping our children/family when I know that there are so many other families out there who are in greater need and who go through so much more than our family does.  The volunteer models are regular people just like me and you who are giving up their own time to help our children.  Most have never met Bryce, Annalise, or anyone in our family and yet they want to help us.  Wow!  It's just amazing to me.

Luhanna has put my mind at ease through this process and made it a breeze for us.  I am so very, very thankful to Luhanna, Linda, and all of the people who are volunteering as models in an effort to raise money to help with our children's daily care.  Every bit of money that is raised during these fundraisers will go toward the daily costs of caring for Bryce and Annalise including feeding supplies, therapy supplies, durable medical equipment, medical supplies (that are not covered by insurance), and maybe even an adapted toy or two for Bryce.

Again, we are so, so very thankful to everyone who is working so hard to make this fundraiser a success.  I know that I will not even get to meet or thank most of you personally, but I hope that you know how much we appreciate every bit of time, money, thoughts, and prayers that are spent and said in behalf of our children.  We are very blessed!  Thank you!

Miracles and William Update

Today, we were able to attend the dedication of the new Gilbert Temple.  We watched it from the Stake center with our 3 oldest children.  The spirit was strong and again for about the 100th time in the last month, I felt so blessed to be a part of this piece of history, thankful to be a member of Christ's church, and to know who I am and what I am doing here on this earth. 

Today we also witnessed another miracle.  William was sick on Friday.  He was running a fever and sick to the point that he was having a hard time walking or moving around much at all.  I wasn't so sure that (health wise) he should go to the Cultural Celebration Saturday night.  However, this was a true once in a lifetime opportunity and he knew he had made a commitment to be there and to perform to the best of his ability.

So that is exactly what he (and 12,000 other youth) did.  They went and they sang and danced in the rain!  From what I understand, the rain mostly held off until the moment the performance began and then it poured down on these youth...and they performed.  They sang, they danced, and they smiled.  It certainly wasn't easy, but they did it and I believe they are stronger for it! 

As William walked through the door last night, he said, "I think I have pneumonia!"  Knowing his history, I figured that if he didn't at that point, he would soon, probably by morning.  (After all, this is the kid who ended up needing to be treated for hypothermia at Cub Scout Day Camp in July...in Arizona!)  Well, here is where this miracle happens.  This morning he woke up and declared that he felt about 90% better then he had the night before.  He was very excited about attending the dedication and has been almost completely fine (health wise) throughout the day.   Honestly, I thought he would wake up very sick and probably need some medical attention, but he did not!  He is feeling so much better then he did Saturday morning.  I believe the fact that his breathing is fine, his fever is gone, and he is telling us many wonderful stories about last night's performance is simply miraculous!  He is glad that he was a part of the Cultural Celebration and was able to attend the temple dedication. 

Cultural Celebration

We just finished watching the cultural celebration.  It was a fantastic performance.  Actually, that doesn't even begin to explain how I felt while watching it, but there really is no way to describe the performance tonight.  The spirit was so strong from the very beginning.  The prophet, Thomas S. Monson was there along with President Eyring.

I am anxiously awaiting William's arrival home now.  It will be good to hear what he thought about it.  He wasn't feeling too well before he left, so hopefully being out all evening in the pouring rain will not have made him feel any worse.  I can't wait to see him!  Even with all  the rain, I am so thankful that he had the opportunity to participate in this "once in a lifetime" event.

Now to look forward to the Gilbert Temple dedication tomorrow!  


Update  11:00pm:  William made it home just after 10pm.  He was wet from head to toe, soaked all the way through, and FREEZING!  He said that his legs were sore from shivering so much.  He looked absolutely miserable!  :(  I asked him if there was anything good about the evening or if it was just miserable.  He said, "It was just miserable.  I cried 5 times."  So sad.

He jumped into the warm bath that was waiting for him.  Then, since that didn't seem to be doing the trick, he just could not get warm, so he took a hot shower as well.  He dressed in warm PJs and came out and had some hot Cocoa with me and Jacob.  As we were drinking and talking, he did share some good things about the day, so I don't think it was all bad.  Maybe by tomorrow things will look even a little bit better.  I know President Eyring told the youth to go home and write about their experiences in their journals tonight.  I think it may be better if William waits for a day or two!  : )

One thing that he said though that made me laugh a bit was when I asked him if he had seen the prophet.  He said, no, I'm like 2 feet shorter than everyone around me and I couldn't really see anything."  Then he said, "but being shorter was actually a good thing in the rain because I could kind of duck behind the taller kids and not get hit as hard with the rain.  I did that a couple of times."  Now there is a positive way to look at it!    

 My poor sweet, wet boy...I just couldn't hug him and tell him enough how proud I was of him.  He can do hard things and survive!