Tuesday, February 23, 2016


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.