Miracles From Heaven

So much has happened and one day I will get caught up.  At first it was the surgery and us just having too much fun with Poppy visiting but then Poppy went home and things with Levi's surgery site went wrong.  With parents and Levi worrying, many doctor visits, and now a mold problem in the house (seriously, this is why you should never wait to journal!) well, it is going to take a while to get caught up.  But before I do that I wanted to share my feelings from tonight before they are forgotten.  

A friend of mine wanted to go with me to see the movie Miracles From Heaven.  But she ended up getting sick and everything was just crazy around here so it didn't happen.

Today I was a little concerned about Levi.  It came to my mind that this all might be causing a little depression in him.  Levi is not a depressed person.  He is happiness in my eyes.  But something was off today.  It makes sense though.  He can't do much.  He can't go to school.  He can't physically play around with his brothers.  Because the surgery site is still open and infected, he is susceptible to more infections so up until this mold issue, I rarely let him leave the house.  Ironic now to realize how unsafe our house actually was.  Anyways,  I had been out and about when taking and picking the kids up from school as well as getting Ruger out to run around.  Levi had pretty much been in the hotel room the whole day.  It hit me how bored he must have been (and of course with my never-complaining-Levi, I wouldn't have known) around the time that David got back from work.  

Perfect timing because now that David was there, I could do anything I wanted with and for Levi.  So I asked him privately if he was depressed.  He said something about not being depressed unless he didn't realize what it was.  I explained it to him and he confirmed that he had been feeling that way.  I tried to get him to figure out a way to get him out that I was comfortable with.  After realizing that he needed "friend" time (which we have set up for tomorrow), I asked him if he wanted to watch a movie with me.  What I really wanted him to do was to get out and about and moving around but there really isn't much you can do when he is limited the way it is.  Plus, its snowing outside so....

After watching the trailer to Miracles From Heaven, he smiled real big and was ready to go.  I am so glad that we went to that movie and not another one.  It was just so perfect in so many ways.  

This poor family goes through a very hard time because of an illness in one of the daughters.  There doesn't seem to be a lot of hope at one point.  But the daughter has so much faith.  She believes things that her mother starts to lose faith in.  I'm watching this movie as this little girl is going through an MRI, needles, surgery, many doctor appointments and everything that Levi has been dealing with.  I watched as this poor girl had to fear death and then be ok with it.  Watching her family stress and trying to hide it from her but she knows.  Oh geez, I kept thinking of my son sitting next to me as we are watching this wonderful movie.

I'm also struggling with the Mom in this movie.  She is so diligent in making sure that her daughter is getting taken care of.  I watch as other members of her family get neglected.  The guilt and worry she feels.  But the one thing that was very different was watching her lose her faith.  Now, let me make this clear that I would never judge someone in that position.  I have lost my faith at a very dark period of my life.  But I had already been there and so through this whole thing with Levi, I haven't let go.  I've held on to that tightly.  But just because I'm holding on doesn't mean that I don't worry or feel guilty.

But instead of crying during that movie because of guilt, it was purely just because I felt connected in a way.  Watching this poor family go through hell and back.  But most importantly, watching a family go though a life lesson that made them love more in the end.  

There truly is no way of every fully understanding love and happiness without experiencing the complete opposite.  And as hard as that is to witness and be a part of, I will take it.

Update

So, its been way too long since I've blogged.  I know this is our family journal but I just didn't want to.  All of this stuff with Levi's health has been so extremely stressful that I just didn't want to write about it.  I've been the same way about talking to people about it.  I just get tired of crying.  I get tired of my stomach hurting.  I get tired of my heart racing.  But most of all, I get tired of acting like I'm ok.

 

This stuff is so weird.  I mean, you are so focused on a child yet you have to stop and seclude yourself just in order to function.  I had to physically take myself away from everyone at least once a day.  But you would think I would have been adamant about spending all my time with Levi and the boys.  Time should seem so precious.  And it is.  But there were time that I had to hide.  I really, really didn't want to break down in front of the kids.

 

Yet, they know.  Just before I went to the doctor, Brigham and Hyrum had parent/teacher conferences.  First was my meeting with Hyrum's teacher.  I already have felt guilty this whole school year about his lack of progress.  My Hyrum, who used to be ahead of most of the children in years past, was now not even on grade level.  If I ever doubted parent involvement, when it comes to school work at home, I am a firm believer now.  A baby changes so much.  I can't volunteer at the school anymore and I was horrible about doing homework with Hyrum. 

 

So, since the parent/teacher conference before this one, I have really been trying to be better about reading with Hyrum and him actually doing his homework.  I haven't been perfect but I knew it paid off as his teacher told me at this parent/teacher conference that he was now on grade level!  But soon after the wonderful news is when I learned that Hyrum knew and felt more about what is going on with Levi than I realized. 

 

Mrs. Smith told me that she didn't know why but Hyrum was much more emotional than he usually is since returning to school after Christmas break.  She said for instance, he cried 3 times in class, that day alone.  Right then I knew what it was and I couldn't believe that I hadn't thought of the other boys.  I knew what worrying about Levi did to David and I but I honestly didn't think it was affecting the other boys. 

 

I am so very grateful that David had me go to the doctor (and I say "had" me go to the doctor because I tried to go before and ended up canceling.  I had convinced myself that nothing could be done.  Have I expressed how annoying depression/anxiety can be as it convinces you of things that a rational person wouldn't think of?).  Because things have lifted in our house.  And I pray that this means that things will be easier on the rest of the family as well.

 

But I should update.

 

On January 26th, Levi had a biopsy done on the lump as well as some blood tests.  I know the following will seem negative and probably even over-dramatic but trust me, when you are not doing well emotionally...just trust me, it was horrible.

 

Poor Levi was awake during this biopsy.  They stuck 4 needles in him and it was not a quick thing either.  At one point I looked up at the radiologist's face and he had this strained look on his face as he was trying his hardest to get in this lump.  Now, imagine a young boy who is terrified of needles having to deal with this awake and it being under his chin!  We found out the next day that Primary's wanted to do it there and they would have put him under.  Errrr.....

 

After the biopsy, we had his blood taken, which wasn't fun either but at least it took a lot less longer to calm him down this time.  We kept reassuring him that there was no way that this could be worse than what he had just been through. 

 

We were told that we could find out as soon as that evening about the blood tests.  You can imagine how hard it was to wait all they way until the end of the next week for results instead.  When we got them they told us that they had had them for a few days.  Errrr.....

 

We had quite the scare too.  When I called the doctor's office the nurse told me that there were 3 abnormalities but couldn't tell me more and that she would put a copy on the doctor's desk (and why hadn't they already put a copy on the doctor's desk yet considering that they had had the results for a few days now???) and that I would just have to wait for him to call.  Now, if you have already been told by a radiologist that this bump is a tumor and you get a blood test back with 3 abnormalities, what are you going to think?  Well, cancer of course.  Waiting for hours for the doctor to call was hard.  Real hard.  But a nurse ended up calling back and told us that the tests came back normal.  Errrr....

 

At the end of the following week we had the biopsy results back and they were not malignant!  They were still at a loss as to what it was but it wasn't cancer and that was all I needed to hear!  And on the 9th of February we had our consultation appointment with the specialist at Primary Children's Hospital.  I'm going to copy what I wrote to some family and friends about this, well, because I'm lazy like that.

 

 

"Ok, so the new doctor at Primarys could not say for sure (until the mass comes out) but he felt that after looking at the biopsy and blood results, ultrasound, and MRI that Levi has a cyst in the Thyroglossal duct. Long explanation to follow....When we are in the womb our thyroids start out in the our mouth area. By the time we are born, they have followed the duct/track down and have settled down in the throat area. By then the duct/track has closen/disintegrated. Levi's thyroids look and feel great (meaning they are where they are suppose to be) but for some reason, that duct/track never went away. So when during these past few years, when he's gotten sick and under his mouth/chin area swelled up like it did, the doctor thinks is when the cyst formed. After each sickness, almost like scar tissue (which interestingly the first ENT kept saying that he wished it was just scar tissue and even thought it was except for the fact that we could not place a time or event that Levi would have injured that area to give him scar tissue) the outside got harder. He thinks the inside isn't like most cysts (liquid in the middle) but more pastey. Because of this it was looking almost like a tumor on the MRI. So they will go in and remove the cyst on March 7th, as well as part of the hyoid bone. After the surgery, how many nights Levi stays in the hospital will depend on how long the Jackson Pratt Drain stays in his neck. The drain will help with the blood that is sure to follow given the area that the surgery will be taking place. I hope I explained this correctly."

 

 

So yeah, that is our long update.  But before I end this, here are some pictures of the boys painting their names on our living room walls.

 

This was one of our distractions during a weekend; painting our living room.  But before we finished we let the boys play a bit.

 

And so did Mommy....hehehehehehehehe.......

And I'll end it with a picture of Brigham frantically painting over Mom's attempt at "kissing" her boys.

So many lessons learned...

On Sunday, some friends (The Castle family) from church brought over some goodies to Levi and then the Stevenson family invited us over for dinner with some Pie Face game time.

 Once again, we were blessed with distractions while waiting on the phone call for the consultation. 

Peggy sent us home with a movie called, "Once I was a Beehive."  We decided we would watch it tonight for Family Home Evening.

 

I had Daddy and the boys start the movie while I made the frosting for the cake we were going to eat afterwards.  Just as I was finishing up, I hear David come up the stairs.  He said, "Did Peggy tell you that the Dad dies just a few months after discovering he has a tumor?"  Both him and I were just floored.  I didn't even know what to say.  The damage was done.  Levi was downstairs watching the movie.  This was doing anything but distracting Levi now. 

 

It is so interesting to me how things in life don't turn out the way you expect it though.  David had the instant reaction of protection.  Even as far as being upset with Peggy sending us home with this movie.  At first I was just shocked.  Crap, now what do we do?  Then I was surprised that she hadn't caught that.  Because I know Peggy.  She would NEVER want to hurt Levi.  Never!

 

So David went back downstairs with the boys and I quickly called Levi up.  First I apologized.  Made sure that he knew that I didn't know that the Dad died that way in the movie.  But he smiled.  The same boy that was in tears, on our living room couch, when we told him that the radiologist thought it was a tumor.  The same boy who immediately started asking about cancer and wanted to know facts, percentages, and all outcomes possible.  But then made it clear to us that he didn't want to be reminded of it anymore. 

 

That same boy of ours, about 2 days later, then brought me to tears!  He told me it was ok because when the movie said that the Dad knew that his cancer was all a part of a bigger plan he decided right then that that was how he was going to look at it now.  He then told me that he would see it that way even if his tumor was cancer and spread throughout his body.  My 13 year old said that!  With all the wisdom of a spiritual giant he put me in my fearful place.

 

After the movie was over I told David.  Through his teary eyes he told me that it took him half of the movie to get past the fact that our son had just been exposed to a movie that started with a man dying of a cancerous tumor. Then David trying to remind himself that it could very well have been him that did that to someone else; not even realizing it. 

We all make mistakes.

 

That's when I shared with him something I had forgotten about.  When Shane died we drove to Oklahoma for his funeral.  Mom was not handling it very well.  Well, no one was but we wanted to try to get her mind off of it.  So we decided to have a girls night at April's house.  We decided to watch "Raise Your Voice."  I had already seen the movie.  But had totally forgotten that the brother dies in a car accident.  It even showed the car accident in the movie.  I was so mad at myself when we watched that movie.  I couldn't believe I had just helped choose a movie, a movie that was suppose to take our mom's mind off of Shane's death, that showed a son getting killed the same way that Shane had died.

 

I feel like I have learned a lot of lessons today.  My son, the movie itself, and also being reminded of what a dear friend of mine did for our family earlier in the day.  Oh yeah, and my Dad's response to it.

 

I have a friend, Brandy, from high school that gave us an amazing gift.  She has offered to fly my Dad here for Levi's surgery.  She is a Godly woman and it shouldn't have surprised me at all when she offered.  But really, who wants to fully accept such a great gift?  Writing that last sentence sounds foolish because really, who wouldn't want to accept such a great gift, right?  But this is my friend and flying is not cheap.  It felt like taking money right out of her hand. 

 

But Brandy made it clear to me that it was God's money.  And my Dad's response? "I'm not going to turn down the chance to be with my family."  Am I really that proud of a person?  Can I not accept the huge blessing of seeing my father?  Of my children getting to spend one on one time with their playful grandfather? 

 

Again, I feel like I have learned so many lessons today.  I am truly blessed.

Distraction

 I was re-reading what I had wrote in my last entry and forgotten to write about some of the illnesses.  I had forgotten that our illnesses actually started with Ruger getting Hand, Foot, and Mouth Disease. I wanted to write about it because it was weird.  It started in the diaper area and then slowly moved down his legs and ended with a few bumps on is hands.  It was weird because usually it is located on the areas of the name of the "disease."

 

The other thing I wanted to document isn't that big of a deal (Pink Eye) but the story behind it was a little amusing.  So, the day before Ruger's adoption, Hyrum wakes up with Pink Eye and I get a call from one of our adoption workers that certain paper work hadn't been filed.  As you can imagine, I was stressed.  But the paper work ended up working out and we got the medicine needed for Hyrum's Pink Eye.  However, I thought it was humorous that when I was getting the medication from the pharmacy, the pharmacist suggested that I have a grandparent or someone watch Hyrum during the adoption so that he didn't expose his illness to anyone else.  Oh yeah right!  Like I'm going to make Hyrum stay home and miss his brother's adoption!  I don't think so.  And yes, I had told her about the adoption and she still thought it was a good idea to keep him home.  Sorry, but not sorry.  Not keeping Hyrum away from this amazingly, important day of ours.

 

But on to the real reason I got on to journal :)

 We have been blessed with many wonderful friends among our many moves.  But before those moves, David and I were starting our family in Rexburg Idaho.  One of our dearest friends there was Christine.  I used to joke with her that she was Levi's second Mommy.  My parents lived in Oklahoma and David's in Utah and Nevada.  When you are doing the parenting thing by yourselves you rely heavily upon the phone with your family and even more heavily upon those physically around you that become your family.  Christine was that family.

 

She loved Levi so very much.  She was so good to us.  So good to Levi.  Physically there to help us while he was a baby.  So when she found out about Levi and what he has been dealing with lately she wanted to distract us.  So she and Michael took us all to Toads Fun Zone on Saturday night.  The boys had such a wonderful time. 

 I know this activity was about Levi but there were so many photo opportunities with Ruger and all these "firsts" as well as all the bright lights!

We got the results back from the MRI.  The radiologist feels it is a tumor bound to the bottom of the tongue muscles.  The ENT has never seen a tumor attached like that so he is skeptical.  He was originally hoping it was a cyst or even lymph nodes coming together.  He is really at a loss as to what it is now. He knows it needs to be removed though which is one of the reasons he is sending us to Primary Children's Hospital. He wants another opinion before they go in to remove it so they have an idea as to what it actually is before they take it out and put it under the microscope. He also wants Levi there because of where the surgery will be taking place on his body. There is a possibility that it will push back the tongue when swelling and cause him to choke.

 

So now we wait some more.  Waiting for the consultation appointment.  But I wouldn't want him anywhere else to have the surgery.  A place where I know he will have constant pediatric care.



Our Health

Our family's health has been complicated these past few months.  Frustrating would be the more correct word to use, actually.

Just before Ruger's adoption (that was in November, mind you...yeah, that is how long this has been going on!) little illnesses started.  It was going through everyone in our house.  We joked that something was "growing" in our house because it just kept cycling through us all over and over.  And a part of me kind of believed that.  I got so tired of us being sick that I ended up washing/sanitizing everything I thought of.  I even put our couch pillows in the washer!

Luckily, the sicknesses never turned into an asthma problem with Brigham.  I know I'm whining in this post here but I truly am grateful that all these sicknesses did not effect Brigham's lungs.  But lets get back to me complaining, shall we?

Eventually, the sicknesses left Ruger, Hryum, Brigham, and Daddy and just focussed in on Levi and I.  Since mine is a little easier to explain, I'll start with it.  A few months ago the last tooth on my upper left side broke.  A few days later, my cap fell off.  I knew I should go to the dentist but we had a new insurance that hadn't kicked in yet so I wanted to wait.  But then the adoption, sicknesses, and holidays came and it was forgotten about.  But a few Sunday's ago, one of my front teeth chipped.  It was cutting my tongue and there was no way I was messing with that.  I am very prone to mouth sores when my tongue gets cut.  That's why I don't suck on suckers.  Plus, I really like my front teeth so yeah...

So I went into the dentist.  The doctor wasn't as worried about my front tooth as I was because when he took an x-ray he saw that I had a serious infection in that back tooth area.  He asked me if I had been sick lately.  Sick lately?  Are you serious?!  I've had the frickin' plague!!!!!  By the time that I finally made it to the dentist I had been diagnosed by my doctors as having an upper respitory infection, walking pneumonia, and 2 cases of sinus infections.  And that was just what I went into the doctor for.  Who knows how many colds and such that I had.  Yeah, he wasn't surprised at all when I told him because he said the infection that he saw was going straight into my blood stream.  As irritated as I should have been, you know, I was actually relieved.  I really was.  I would have never have guessed that my sicknesses would have been due to a tooth but it was so nice to have a real answer.  Something that was fixable.  So here I am today blogging without a sickness in my body and it. feels. WONDERFUL!

Levi, on the other hand, is more difficult to explain.  A few years ago he got sick and it showed up under the mouth area between the jaw bones.  The doctor treated it with antibiotics and it went away.  But the doctor warned me that if it happened again that I should go to a specialist.  That it may be something more.  So when it happened again, just after the adoption, for the life of me I couldn't remember what that doctor had said.  I remember him saying that it could be a problem but what was it again?  His current doctor gave him some antibiotics and told us to watch it.  Again, it went away before the antibiotics were even gone. 

 But just a few days before Christmas, Levi came to David and I and told us that he had another bump under his chin.  This time it was different though.  The 2 other times it had happened, it had came with a sickness (the usual head cold stuff).  It was also different because from the top of his neck to the tip of his chin was completely swollen.  So much so that he talked funny.  This time it was a localized bump and he was not sick.  And when the doctor gave him an antibiotic again, it did absolutely nothing.

This doctor knew it was something more for sure at this point.  He sent us to an Ears, Nose, and Throat doctor on Thursday of last week.  The ENT doctor felt the lump, thought he felt more than one behind the actual lump that you can see and sent us for an ultrasound.  He thought it would be a cyst in the submandibular gland and that it would be as simple as removing it.  Unfortunately, when the ultrasound came back it didn't look like there was any fluid to it.  It was in a hard area to ultrasound but he is pretty sure it isn't a cyst.  So today Levi had an MRI done.  

We don't have a lot of answers right now but I can say with all sincerity that I feel so much better now than I did earlier.  I am so grateful we live in a day where technology is so great.  We have all these options as to finding out what this is.  Whatever it is, the doctors fear is it getting bigger and it may cut off his airway in time.  The ENT doctor said it could be many different things but didn't want to scare us because they weren't good.  And I appreciate that.  I had looked up enough things on the internet to scare myself.  I don't need to add to that list!

So we are waiting for results and praying for answers.

A New Year

The Bowler family invited us over for New Years Eve but we asked to have it over at our house because of Ruger.  We knew that there was no way that we could be able to enjoy late night celebrations with a baby who needed to go to bed early.

 We just played games and had yummy food.  It wasn't anything big or special but was nice to be able to do it with good friends.

 New Years Day was filled with me de-cluttering the boy's bedrooms while the boys chilled.  To some that would seem mean.  That I work while they relax but it actually was relaxing.  I could finally clean in peace without little ones asking for my attention (and trust me, David does a lot of cleaning anyways).  At one point I went upstairs and saw this.  I love how simple boys can be sometimes.

 And then I heard a bunch of commotion and found them all attacking Daddy!

But Daddy and the boys had to go back to reality this morning as work and school started up again.  Here is a picture of the boys before school in Poppy and MeMaw's outfits that they sent the boys for Christmas.

So Much Snow!

 We got so much snow in the month of December.

 And it made for awesome play time outside!

 Even our neighborhood kids/friends were climbing the fence to get over and play!

 In our front yard there is a huge pile of snow from where Daddy, Levi, and Brigham have been putting the snow that was in our driveway.  Many a mornings we woke up to snow so that pile just got bigger and bigger as they cleaned out the driveway.

 One day Hyrum asked if he could go outside to play.  I was watching him from the living room and all by himself he starting to climb it and slide down with our sleds.  Brigham soon joined him.

It has been very cold so this snow isn't melting.  And the forecast doesn't show it heating up anytime soon so we should be enjoying this white stuff for quite some time.