Palm Tree

My given name is Tamara.  Tamara is a Hebrew name that means palm tree.  When I only grew to be 5 feet tall, I was sure that my parents had somehow cursed me to be short by giving me a name that meant palm tree.  :)  I've always kind of thought that was a lame thing to be named after.  Today I read something that made me think differently about the meaning of my name.

Every week, some of John's coworkers send out an email with a scripture and spiritual message for the week.   Occasionally John will send them to me.  Today's message instantly send the spirit throughout my body and brought tears to my eyes.  The title of it was Flourish Like a Palm Tree. 

TODAY’S SCRIPTURE
 “The righteous shall flourish like a palm tree...”
 (Psalm 92:12, NIV)
 
 TODAY’S WORD from Joel and Victoria
 Have you ever seen a palm tree in the midst of a great storm? That tree may be bent
 so far over that it’s almost touching the ground, but when the wind finally stops,
 that palm tree bounces right back up. What’s interesting is that while that palm
 tree is hunched over under the pressure of the storm, it is actually becoming
 stronger.

 See, the reason God said we’d flourish like a palm tree is because He knew there
 would be difficult times. He knew things would come against us to try to steal our
 joy and victory. But God said, “You’re going to be like a palm tree because when the
 storms of life blow, you are going to come right back up stronger than before.”

 As you reflect on the events of your life, remember, the storms you have encountered
 have only made you stronger. You are wiser, you are more alive, and you are headed
 for victory. Your brightest days are right out in front of you! Always remember that
 with God on your side, you will flourish like a palm tree!

I know that I was suppose to read this message today.  Sometimes it is hard not to feel like I am going to break under the pressure of the current storm.  Lately I have found myself thinking/saying things like I can't keep doing this.  I am not strong enough to do this.  I am only one person.  However, I know that I am not doing this alone.  I know that this storm will pass and when it does, I will stand strong and tall again until the next storm comes.

God is good.  God is real.  His plan is perfect.  With Him, all things are possible.   With His help, I will live up to my name and flourish like a palm tree!

While we wait

Unfortunately this post will not have any pictures because I cannot get them off of my phone right now.  Once I figure it out, I will add them to it. 

Last Tuesday I took all five kids over to Labcorp to get blood drawn on everyone but Spencer to test for Celiac Disease.  My mom and Adriene, one of Bryce and Annalise's respite workers came with us to help.  Let me tell you, it is quite the feat to get all 5 kids up, dressed, prepped for school, and to the lab by 7am but we did it.  Drawing blood went well overall.  Bryce didn't make a peep, but poor Annalise was terrified and began screaming "all done!" before they even began.  It took two of us to hold her arms while they got the needle in.  :(  When they were finished, she said to the lady who drew the blood, "do not do that EVER AGAIN!"  She had fingers from both hands pointed at the lady and moved her arms for emphasis as she said it.  It was cute, but I felt so bad for her...especially knowing that she will have to have blood drawn again at some point in her life.

I just called the pediatrician's office to see if the results have come in and I was told that they are in and the doctor will call me later today to let me know what the results say.  Now I'm going crazy wondering what they say, wondering if others of our children have Celiac or not.  Knowing that the results are just sitting there is making me nuts.  So...instead of just waiting, I decided to catch you all up a bit. 

After the blood draw ordeal was over, my mom took my older boys to school, Adriene left, and I took Bryce and Annalise to school.  I then went with my mom to her Dr. appointment, where I discovered that a lady from church is the nurse there.  That was fun to see her.  I ran a quick errand and then had about an hour before I was meeting my visiting teachers at the park for lunch so I decided to go see a friend who had given birth just a few days earlier.  Her little boy is so tiny and it was great to snuggle a little one again.  It was also fun talking to Monica and her family.   They have twins as well who are Bryce's age.  As the little boy came in, he saw me and instantly ask where Bryce was.  He and Bryce have become pretty good friends.   

After a nice lunch and visit in the park, I headed back to start the afternoon school pick up.  It was Tuesday which is usually my night off, so even though John is in San Diego all week for work, I decided I wouldn't give up my night off.  Instead I used some respite hours and headed out.  I ended up going to Target to scope out Gluten Free food.  Not exactly a break, but it was nice to be able to browse the shelves on my own time.  I found quite a few "treasures" for Spencer and was happy that I would have something to send him in his lunch the next day.

Speaking of Spencer, he is doing so great at turning down foods that he should not be eating.  He had a reward trip at school yesterday.  They went ice skating and then to a pizza place for lunch.  We had packed a lunch for him, but the kids kept trying to get him to eat some of the pizza.  He said it was really hard to turn it down, but he did because he really wants to feel better.

He is home today because of some pretty intense pain.  He definitely has a long way to go before he is healed from the damage done over the past years, but hopefully soon he will start feeling better.  He has a wonderful Cub Scout leader who has two children with Celiac Disease that was discovered when they were a little older who is helping me through these early days.  There is SO much to learn about Celiac.  It is definitely not as easy as "just don't eat wheat".  Cross contamination is a huge challenge.  Also, because of the severity of the damage done by the disease, the doctor wants him off of not only foods with Gluten forever, but oats and dairy for at least 6 months.  Look around...that cuts your food choices down a lot!  I am finding more and more recipes for foods made without these items, so that is a plus.

I cannot wait to find out if any of the rest of us have Celiac as well.  I think that either way, we will become a gluten free household.  I just don't know how I would do it otherwise.  The others are not to thrilled about that, so we will have to see how things go.  Spencer is calling.  I better go see what he needs.  Hopefully I will have news to share soon!

Post-streptococcal Glomerulonephritis

As many of you may know, last Sunday night Spencer discovered that he had some blood in his urine.  I wasn't too worried about it because I just figured it was a bad bladder infection or something similar and we would just make a quick trip to the pediatrician in the morning and get him on an antibiotic to clear it up.  Well, once again I've had to ask myself why I keep thinking that these strange  things that pop up in our lives will have a simple answer.

In true Clayton fashion, when we got to the doctor Monday morning we soon learned that this was not going to be a quick trip and probably would not have a quick answer and solution to the issue at hand.  When they tested Spencer's urine, they found no sign of an infection which was good news.  However, they did find that there was indeed a large about of blood in the urine as well as a large amount of protein.  The doctor didn't think it was kidney or bladder stones because Spencer didn't really have much pain.  So obviously we were all a bit concerned.  The doctor explained that what this told us was that the kidney's were not filtering the way they should be.   What we didn't know was why.

So, instead of heading home so that Spencer could enjoy his last day of Fall Break, he and I headed over to the lab to get a bunch of blood work and another urine test done.  After waiting for an hour and a half, we finally got in to have his blood drawn.  Like his mom, poor Spencer has tiny veins and they always have a hard time finding them.  It has only been a couple of months since he had blood drawn the last time and unfortunately he remembered it well.  The silent tears began to fall even before the needle came out.  This time it only took two pokes and a bit of searching for them to get a good vein though and soon we were done.  Spencer was a very brave boy and did a great job of holding his arm still although he was shaking.

We then headed to Iceburg for lunch (Spencer's choice).  Other then a little slip-up with some breaded chicken and a rice krispy treat he was given, this was the last gluten meal he has had.  He is amazing me with how well he is doing with avoiding gluten.  It is definitely a learning process and we all have a way to go, but more on that later.

To make a long story a bit shorter, on Thursday afternoon the call came from the pediatrician with the results from the blood work.  It appears that Spencer has Post-streptococcal glomerulonephritis.  He must have had Strep Throat a week or two ago and since he did not have any symptoms, we didn't know about it and obviously didn't treat it.  Well, the blood test show that he does indeed still have the strep bacteria in his blood and this is most likely what is causing the issues with the kidneys.  He is now on an antibiotic and will have another urine test in a couple of weeks to be sure everything has cleared up.  Never have I been so relieved and thankful to hear that one of my children has Strep! 

Koiliakos

Koiliakos...a word I had not heard of until 2 days ago, but a word that will now become a part of our life.  It means "suffering in the bowels" and you may know the people it refers to better as Celiacs.

If you read my last post, you already know that Spencer was going in for an endoscopy with biopsies earlier this week to check for Celiac Disease.

That morning, he was very nervous about the procedure.  After the nurse, the anesthesiologist and our GI, Dr. McOmber had come in and explained things to him, he was a bit more at ease and did a great job!  They were all fantastic with him.

The procedure took a total of 7 minutes to complete and soon after Dr. McOmber came out to talk with me.  He had some pictures that he had taken and explained that everything looked good until he got to the duodenum, or first part of the small intestines.  He showed me how the color changed a bit at this point and the nice folds that we had seen in the stomach were not there.  He told me that he could not say for sure until we got the biopsy results, but that the damage he could see was what they normally see in a person with Celiac Disease.  I then went back to the waiting room to wait for the nurse to let me know that Spencer was waking up and I could go back with him.

He looks like he's having a good dream doesn't he.  I believe he was.

 

At one point Spencer looked over at me like this and said, "Mom, I went to the moon!"  He later told me more of his adventures of jumping in the craters of the moon and feeling like he was flying.  He also went to Mars.  When I asked him what Mars was like, he said, "it was red."  He said that he went to these places alone.  He also did some time traveling.  He couldn't remember where he went, but he did travel in the Tardis.  Yes, he is a Dr. Who fan.  :)  Of course Spencer doesn't remember any of this.

 So, the wait to find out for sure if we are dealing with true Celiac Disease or not began.  Last night I got a call from Dr. McOmber that ended the waiting and wondering and confirmed that Spencer does indeed have Celiac Disease.  He told me that when Celiac disease is confirmed in a person, they rate the severity of it from 1-3 with 1 being mild and 3 being most severe.  Spencer is a 3B (I'm not sure yet what the B means).  Dr. McOmber said that Spencer is one very tough kid to still be functioning as well as he is with the amount of damage and inflammation that he has.  

We have known for years that something was going on with Spencer.  Because of some things we have tried and promptings from our Heavenly Father, I was 99.999999% sure it was something food related, but I had not been able to pinpoint what it was.  For that I am so thankful to those in the medical field who think outside the box and look at the whole person and not just go by what they expect to see. 

To find out that he has Celiac Disease is discouraging and overwhelming and yet at the same time I am so thrilled to finally know what we are dealing with.  For years he has been in pain, he has not been feeling well and finally we can learn and do whatever we need to in order to help our boy feel better.  For this I am very thankful!

Dolphins, Hip Surgery, Celiac, and more!

Time continues to fly...

We are finally drying out after some pretty major flooding here in Arizona last week. Our family was very blessed through it. Despite the horrible time we are now having with mosquitoes, the power being out for a few hours, and the one day that we were not able to leave our home due to flooded dirt roads, things went well for us. We had many friends whose basements flooded and ceilings caved in with the amount of rain, so we feel very blessed. Arizona just isn't used to that much rain all at once.

William is once again cast free. He still has a lump on his arm, but the doctor assured us that this will continue to heal and within a few months, he will be back to normal. He just has to refrain from any crazy activity for a few weeks.

Jacob was home from school for a full two weeks with viral pink eye, or some type of eye infection. Throughout the course of the illness, we saw the pediatrician twice and the eye doctor twice. Jacob was in a lot of pain and having a hard time keeping his eyes open. His eyes didn't respond to any of the usual methods of care for pink eye. The doctors aren't positive what exactly we were dealing with. Luckily no one else caught it, which makes me wonder if it really was pink eye. He is doing better now although he is still behind in some of his schoolwork. That is a whole other story.

Spencer will be going in on the 29th of this month for a scope to check for Celiac disease. He has had stomach issues along with some other things that I won't go into right now for years. When he is eating clean, he does much better, but he still has some trouble. So a few months back, during a particularly rough time for him, I decided to talk to his pediatrician and have some blood work done just to be sure everything looked okay from a medical stand point. Everything came back fine except for the Celiac panel. One piece of that was abnormal. The pediatrician suggested that we see a GI to see what he thought about the results. We have a great GI that we trust, so I took Spencer to see him. He said it could be Celiac disease or just intolerance to gluten. The only way to know for sure if it is true Celiac is to do a scope and biopsy. Depending on the results from that, we may be trying a gluten free diet for a few months. That will be a new one for us, but at this point, I am willing to try just about anything to bring that boy some peace.

Spencer has also joined cross country this year and is loving it!

The date for Bryce's hip surgery has been set. November 19th is the date. We knew this day would most likely come sometime and luckily we have been able to hold it off as long as we have, but unfortunately the time has come. About 3 months ago I took him in to his Orthopedic appointment and they took x-rays like they have been every 6 months since he began regressing. It took me by surprise when the doctor came in and said that his left hip has now grown 50% out of the socket. It’s a really long story, but basically they are going to have to go in, cut the bone and place the ball back where it belongs. The right hip is out as well, although not quite as far, so he will have both hips done at the same time.

A few weeks ago, Bryce and I flew to Utah to Shriner Hospital for a second opinion. Today, John and I went in to our orthopedic surgeon and asked a bunch of questions. After lots of praying, research, and evaluating, we know that this is what we need to do for Bryce in order to avoid major pain and other challenges in the future. It’s not what we want and I dread the pain he will be in and PRAY that this will not cause any type of regression for him, but it is the best of all the choices we have at this point. He will be in the hospital for 4-5 days and then will have 6-8 weeks of recovery. It is major surgery and we would love any extra prayers at that time.

Bryce is also dealing with some GI issues. At his last appointment he had lost almost 4 lbs since April! He is now back under 40 lbs. It’s frustrating because it feels like it took us forever to get him over the 40 lb mark and now we have fallen below once again. We are not sure why this has happened, but they have upped his calorie level to 1600 cal./day hoping this will help. I am still doing a blended diet and that seems to be doing great things for him on a neurological level, so hopefully we will be able to keep that up. Since going in for that appointment 2 and a half weeks ago, Bryce has thrown up twice while at school. We aren’t sure why, but that is not going to be helping his weight issues, that is for sure. He and Annalise go back in for a weight check on the 3rd of October.

Although Annalise gained weight, she was only up 3 ounces. Not enough for a 5 month period, so I am adding calories wherever I can to her food. Thankfully she is still eating by mouth, but has to have things cut small and soft or she cannot manage it. She fatigues very easily when eating. She loves yogurt and luckily a lot of oils and other good calorie dense foods can be added to that. Smoothies are great as well.

She also went to the orthopedic CP clinic today. Her dystonia has gotten worse, but there isn’t a whole lot we can do for that right now because she is still so young. She will be getting a better, more supportive wheelchair and they would like me to bring her there for an extra hour of PT once a week for a few weeks to try a few things with her that might help her gain more strength. That is going to be an extra hour drive to and from the hospital weekly. Hopefully it will be worth while for her.

Some super exciting news for Annalise is that she will be getting a wish granted from Make-A-Wish in the near future. Her wish fairies came last Sunday evening to bring her (and the rest of the kids) some small gifts and to find out what her one true wish is. Her wish is to swim with the dolphins. A pink dolphin to be exact! We aren’t sure the pink thing is going to work out, but somehow they are going to make her dream come true. We are just waiting now to hear if they are able to grant this wish and where it will be and then we will pick some dates for the actual adventure. It’s nice to have something fun to look forward to. Bryce’s trip was amazing and I’m sure this one will be too!

Well, this post has gone way longer then I had planned, so I will end for now. It is now almost midnight and we have a big day of fun stuff planned for tomorrow.

One Step Forward...

five steps back!  A little less then a month ago (it may have even been on the day of my last post) I was feeling so far behind and a little frustrated that I could not seem to get caught up.  John said something to the effect of two steps forward and one step back.  I said that no, it was more like one step forward and five steps back.  I was feeling tired and rather overwhelmed...to put it mildly.

 However, since the play that John and our two respite workers were involved in had just finished and my sister had come to visit and help with my dad as he came home from the hospital, I was encouraged and had hope that life would calm down just a bit and I would be able to get a little break.  I was also looking forward to a week's vacation with my extended family at our biennial family reunion that was coming up soon.

Well, I'd love to tell you that those 5 steps have condensed to one, however, one month later I must say that those five steps back seem to have moved into leaps.  Shortly after I made that comment above, Bryce, Annalise, and I all ended up sick with a couple of random viruses.  After visits to the pediatrician and multiple tests, we found that Bryce had Herpetic Stomatitis, Annalise had Parvovirus (Fifth's Disease), and since we all ended up with a bad chest cold/cough which is not associated with either of these viruses they figure that we also had the Summer flu or some other random virus all mixed in.  All together that lasted a couple of weeks. We are all still coughing and Annalise is definitely dealing with some neurological side effects of being sick, but otherwise we seem to have recovered.  We are very thankful for the meals that were brought in and the many well wishes and prayers for our family during our "sick days".  We have such wonderful family and friends!

Luckily we were able to make a quick trip to Vegas to see my family.  We drove up Tuesday night, arriving about 2 AM Wed. morning.

It was a crazy quick trip and really not too relaxing, but it was fantastic to spend a little time with my parents, brothers and sisters (including those who joined the crazy Stephens family through marriage), nieces and nephews, and my Mom's brother Uncle Mike.  We drove home Friday afternoon.  A very quick trip!

 Thankfully the van worked great the entire trip for us!  For those of you who have followed our road trips in the past, you know that this is kind of a miracle for our family.   Everything was good with our home when we returned except that our large fridge had quit working.  It has now been cleaned out and we are hoping and praying that it can be fixed without costing us an arm and a leg.  Two of the suitcases are still waiting to finish being cleaned out and put away.

The Monday after we arrived home, William and John left for Scout Camp.  I got a call Tuesday morning from John letting me know that he and Dave Klein were on the way to the Show Low hospital with William.  He had fallen out of a tree while climbing it to get a pocket knife that some boys had been throwing and had gotten stuck in that tree.  William figures he was about 10 feet up when the branch he grabbed for broke and he came crashing to the ground breaking him left arm in two places and busing his face and right arm up a bit.  We are so thankful that his fall was not worse and that it happened on one of the days that John was there at camp.  Since he starts school in two weeks, we are also thankful that it is not his right arm that is broken.  

So looking ahead, do I see peace and calm and time to get caught up in our near future?  Not exactly.  In addition to the 5 "regular" appointment and the therapies that are scheduled between now and the end of the month, I will be taking William in to have his arm casted tomorrow (luckily I don't have to drive to Glendale for that like I originally thought would be the case).  Then Tuesday, Bryce and I will be flying to Utah to spend the day at Shriner's hospital in Salt Lake City, Utah.  We will be taking a 6 am flight Tuesday morning and retuning about that same time that night.

Our older boys head back to school on the first of August, so we will also be doing some back to school shopping in the next week or so.  I seriously can't believe they are going back to school already.  Summer break just isn't long enough anymore.

So, if you don't hear from me for the next couple of weeks, don't worry.  I am still alive and I will resurface again one of these days.  :)  I seriously apologize to everyone who has called, emailed, or tried to contact me that I have not gotten back to.  I am not avoiding you.  I would love to chat with you.  I love you all and you are in my thoughts and prayers, but I just don't seem to be able to keep up with everything right now.  I feel like I am failing miserably in multiple areas of my life at the moment and am trying hard not to get down about it.  Hopefully I will still have friends by the time life settles down a bit.  :)

Mom and Dad Clayton, you are in my thoughts and prayers constantly.  I hope that Mom is feeling better and that Dad is out of the hospital soon and you both can continue on that wonderful journey you are on in South Africa as missionaries for the Lord.  You are such a great example to our children.   We love you!

Keep the faith.  Life is good and we are so blessed.  Even during these crazy times...maybe especially during these crazy times...I see so many miracles and receive so many tender mercies on a daily basis.  Many are personal and others can be seen and witnessed by those around us as well as by us.  I am so thankful that we have a loving Heavenly Father and a Savior who know us and are there to lift us up.  I am very grateful as well for the Holy Ghost that can guide our steps every day.  Heaven knows I couldn't be doing this alone!  That would be absolutely impossible!  Whether I am 5 steps behind or 2 steps ahead, I am much further along than I ever could be without the non-stop help from above that we receive every minute of every day.

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!