"They're GIGANTIC!!!"

...said the ENT when she looked in Matt's mouth.

He posed nicely for me here :)

(I was almost done with this big old long post when I lost it...all of it...so you might be really lucky and get a condensed version here as I retype...I emphasize "might".)

Okay, so a couple of months ago I took Matt in because he's always been a loud breather/sleeper and I had recently discovered, what I thought to be, an obstruction in his nose.

The doctor said that what I thought was causing the problem was really not a big deal, enlarged yes, but not to the point of being a problem, 'but boy, those tonsils sure are big!'

He prescribed some Nasonex and something else to see if it took care of it but if not, to think about getting the tonsils/adenoids out.

Matt couldn't stand the nasal spray and it was a fight every day so I eventually gave up.

Just the last few weeks he has started sounding super congested when he talks and he's developed a habit of, what Andy calls, "reverse sniffling".  He quickly puffs out air like he's trying to expel something.  He's doing it constantly throughout the day and he doesn't even realize it.

So, I thought it was time to take him back in.

When I made the appointment Matt was quite upset.  He complained and whined that he didn't want to go.  That lasted a few days and then he forgot about it.

This morning, about half an hour before we had to leave for the appointment, I told him where we were going and he threw a fit.  He cried and refused to do the things he needed to do to get ready.  I ended up brushing his teeth for him and washing his face.  I about had to carry him to the car.  I told him early on that he could have a treat afterward if he cooperated.  He seemed to like the idea but it didn't affect his behavior much.  I had to physically pull him out of the car and guide him to the building.  It shouldn't have bothered me but I wondered what all the other people in the parking lot were thinking as I dragged a screaming child into the hospital :)  He even sat down on the steps a few feet away from the entrance and refused to go in.  Using the treat as leverage, I was able to convince him to go in on his own accord with a good attitude.  Once inside he sat quietly on my lap while we waited to be seen.  I gently traced the lines in the palms of his hands to try and calm his nerves (he loves this and often asks me to do it during church).

I was afraid we would have tears in the office but Matt did great!  After the PA looked in his mouth and made her exclamation she told me she loved it when it was so cut and dry and there was no question what should be done.  She was so good with him and put him at ease as she talked to him and explained things so that he could understand them.  She was super nice and sensitive to the fact that there were some fears present.  (I wish she would have a talk with Josh's anesthesiologist.)  By the time we were leaving, Matt walked out of the hospital with a spring in his step and a smile on his face.

On the way home I stopped and got him an ice cream cone (of which I ended up eating the majority because he said he was full :).  I asked him if he felt any better about getting his tonsils out to which he replied, "A tiny bit better."

So, we are set up for the 10th of August.

All three of my boys are spending time in the hospital this summer...and they're all two weeks apart.

Now who thought that was a good idea?  Well, at least we're keeping things exciting!

 Let's have one more look at those things...

How about an update on Josh?

He's doing super!

 As a matter of fact, yesterday at church, his doctor asked Andy if the last few days had been pretty bad.  When Andy responded that Josh really hadn't felt much pain, he was floored.  He said that he had totally expected it to be much worse than the last one and thought he'd even have to prescribe something stronger than the Lortab he originally prescribed.

Well, we're chalking it up as a miracle and are so grateful that it's going so well.

As a matter of fact, we're having a hard time keeping him down.  He's often popping up on his crutches to go to the bathroom or do some other small thing.  I have to keep reminding him to lay down and put his foot up.

We've been able to back off the medicine quite a bit the last couple of days too.

What a blessing!

Andy and I have the best families!  They are so supportive and helpful.

The first two day my mom was there watching the other kids and cleaning my house.  I told her that lately she's been cleaning it more than I have :)

Then Friday, Andy's parents came and spent the night and a good chunk of Saturday with us.

Ben loves his "Bapas" (Grandpas).  When either of them are/is (which one is it?) around he will have pretty much nothing to do with anyone else.  

Sunday I stayed home from church with Josh.  We decided to fill that time with things that would be comparable to going to church...so we read scriptures and Ensigns and indexed.  Josh wanted to learn how to index for his birthday a couple of months ago.  I'm impressed with how well he has picked it up.  He still needs a lot of help deciphering handwriting but he knows what he's doing...I think it's great.

For a parting shot I leave you with his X-ray.  Since I thought the flesh and blood picture was a bit too graphic to share on the blog I figured just the bone picture would be fine.

He has two steel plates and four screws in this one.  The doc. described to me how he put the screws in and then tightened them up to fuse the two bones together...interesting.

The Wheels on the Bus

Guess what came to our house today?

Ben was just about beside himself with excitement today as he realized he was finally going to be able to ride the bus.

He's been attending school for a bit now, but as I mentioned before, hasn't been able to ride the bus since his health plan has not been in place yet.  Each time I have picked him up from school and he sees all his friends getting on the bus he points eagerly and does his little sign for bus that he made up (rolling his fists around each other like you do for the song "The Wheels on the Bus").

He cries when he can't get on so I was very excited to tell him that he could ride it today.

I could tell he understood what I was saying this morning as I was getting him ready to go.

Sometimes you wonder if he's catching the meaning of what you're saying but other times you just know.

We waited patiently...

 

and when it arrived and he got on I don't think he looked back once :)

He was happy as a lark!

I got a phone call from his teacher a while later and when I saw the caller I.D. my heart sank thinking that he was having a seizure.  However, she apologized for calling and said she just had a couple of questions for me.  What could they use for reinforcers for him since the little candies they used for the other kids would be against his diet?  "Grapes.  He loves grapes."

What does Maymee mean?  "That's his name for me."

That's what she figured.  She said he cries for maymee every time they ask him to do something he doesn't want to do.  Ha!

I asked how he seemed when he got off the bus, wondering if when he noticed I wasn't there with him if he had a hard time.

She said he was just so happy.  Yeah!

So, while Ben was off at school and my blessed mother came to be with the other kids I had an important meeting concerning something coming up in the next month or so.  Much more to come on that.

When I got home from the meeting it was time for Ben to arrive home as well.  We waited and watched out the window.  While waiting, our mail lady came up the walk with a package!  Who doesn't love getting mail like that?

It was from Andy's sister up in Idaho.  She and her kids were so thoughtful and sent a sweet box full of presents for each of the kids and adults.  They were thinking of Josh and also of Ben going in to start the diet in a couple of weeks and wanted to send their love.

The kids of course (and the mom) were so excited to open the box and find such fun things inside.

I was so touched by her thoughtfulness.  Thank you so much dear Jenny!

Shortly after, Ben's bus pulled up.  We all went outside (except for Josh of course) and welcomed him home.  I climbed the steps and met Ben at the top.  When he saw me he grinned and said "Maymee!  Maymee!"  It warmed my heart. 

Look at that sly little grin on his face.

The aide had a couple of questions for me so we chatted for a minute.  Mom took Ben's helmet off as we talked since sweat was running down his face.

As it drove away, he was so happy and excited to "tell" us all about the bus :)  It was stinkin' cute!

Too bad there are only two more days that he'll go to school before the summer session is over.

I hope the rest of the summer flies by so he can enjoy his bus experience to a greater extent.

Worst Foot Forward

Josh and I spent yesterday in the hospital...well, at least about 10 hours of it.

He had his right foot done...you know, like this...only there was a little bit more to it than that.

This one was worse and required more work.

Andy gave him a priesthood blessing the night before.

As we were leaving for the hospital yesterday morning Josh told me he felt pretty good about things because of the blessing.  He didn't seem to nervous.  It was nice this time knowing what to expect.

I told Josh to give me a funny face :)

Dr. Cook came in and said hello after they got us comfy in our room.  The nurse did all of her stuff and then the anesthesiologist came in.  He sat down and proceeded to go into great depth about what he was going to have to do and the possible risks associated with it.  I could just see Josh tensing up next to me.  At one point he even plugged his ears while the anesthesiologist was talking to us.  I tried to reassure him but I knew the damage was done.  

Our friend finished talking and then unlocked the wheels on the bed and started wheeling Josh out.            I could tell he was trying to be strong but he had been shaken.  I tried not to cry as I gave him a hug and told him I loved him and he would be fine.  He clung but I finally pulled away and he was gone.

Bless his heart.

For the next 3 1/2 hours I was on my own.  I read a lot (I must admit, I was kind of looking forward to that time knowing I would be able to relax for a few hours and just read.)  I also slipped down to the gift shop and cafeteria.  I had been chilly up in the room so I got some hot chocolate and burned my tongue.

About half an hour after they had initially told me that Josh would be done with surgery I heard a familiar voice out in the hall.  Andy had come and brought some sweet potato fries with him.  He knows how to make me happy!

  We don't often have a chance to really talk during the day so it was nice to have him there and be able to chat.

We waited and waited.  Finally, Dr. Cook came in and said that things had gone well, there had just been a lot to do.  Surgery had gone an hour longer than expected.  He showed us a picture on his phone and explained what he had done.  He mentioned that the anesthesiologist had not given Josh any Novocaine when he put the IV in and Josh had kind of freaked out.  Poor guy.  Dr. Cook wasn't sure if he would remember that or not...I hoped not.  Dr. Cook Sr. came in and visited a bit too and they said Josh would be back in a while after he was fully awake.

About 45 minutes later they wheeled him in.  Andy had been away from work much longer than he had expected but he was anxious to see Josh so he waited patiently.  He spoke to Josh a little and then left.

The nurse suggested we let him rest for an hour or so since it had been such a long surgery.

I was happy to sit back and read some more while he tried to sleep.

Honestly, hospitals encourage you to sleep but I don't know how anybody ever does with all the noise going on out in the hall.  Nurses and doctors laughing and talking, everyone's monitors going off, carts and beds clanging around, someone's t.v. turned up extra loud.  Josh's eyes were closed for about an hour but he never fell asleep.  At that point he wanted a popsicle...a banana popsicle.

We knew to be careful after February's experience of much throwing up.  So we took it a little at a time.

About 1 1/2 hours after he had come back to the room our nice nurse suggested he get up and try walking with crutches a little bit.  They unhooked his IV and got him sitting up.  Before standing, Josh said he felt like he was going to tip over so they promptly layed him back down and hooked him back up and said they would try again in a little while.  Josh asked for another popsicle...this time, grape.

He seemed to be a little more on the peppy side by now.  I continued to read while he quietly watched a bit of t.v. and enjoyed his popsicle.

Every now and then I asked Josh if he felt like he wanted to try walking again and he kept saying he didn't think he was ready.  I couldn't tell if he really felt that way or if he was just kind of milking the situation...he was really enjoying those popsicles :)

I had been in touch with Mom, who was watching the other kids, several times.  I felt bad that things were taking so much longer than I had expected.  Eventually I told Josh he needed to try...we just couldn't wait any longer.  We got him up and going and he was steady enough that they said he could go.  I was so thrilled that he had kept all the liquids popsicles down this time.

Some how he ended up with another popsicle before we could left...cherry this time.

After he was done eating we got him dressed, the nurse gave us our instructions and off we went in a wheel chair.  I pulled the car around and we got him situated in the back seat with his leg propped up.

Wanting to reward him, (because popsicles aren't enough), I offered to stop by an ice cream place and get a root beer float for him.  Of course I had to get something for myself too so we drove happily down the road to the pharmacy eating our sweet treats.  When we are almost to the pharmacy I heard some gagging sounds in the back seat...oh dear.  "Josh are you throwing up?"  I heard a faint affirmative.  Luckily I had armed him with a little blue bag from the hospital expressly for that purpose.  Gratefully there was no mess.  I instructed him to put his float aside and we would freeze it when we got home to be finished at a later time.  I felt so bad and felt like I was to blame since I had been so selfish in wanting ice cream on the way home.

We picked up the meds and then finally arrived home at 5:00 p.m.

Bless Mom's heart...ten hours with the kids, keeping them happy while sacrificing her own comfort and desires.  Thank you Mom!

We made Josh comfortable and shortly thereafter, my visiting teacher arrived with dinner.  What a blessing.  I had not planned on being gone that long so it worked out very nicely to not have to worry about fixing something.  

Josh continued to not be able to keep anything down so I began to feel less responsible realizing that it probably would have happened no matter what.

To him that is the worst part though.  Each time it brought him to tears and he would say "I didn't want to have to do that again".  Eventually, at 9:30 he kept a syringe full of water down.  We were able to give him his antibiotic and he drifted easily off to sleep.

Andy kept watch last night while I did the Ben thing.  We weren't sure how things were going to go for Josh during the night seeing that we didn't know when his anesthesia would wear off.  We were hoping he could last until morning.  Well, he did last until morning...4:30 in the morning he woke Andy up and told him he was starting to feel his foot.  He got his first dose of pain meds and had a hard time falling back asleep.

He was awake and happily watching cartoons though when my alarm went off at 7:00.

He did well today...only occasionally mentioning that his foot is starting to hurt right about the time that he is due for meds anyway.

He's getting some good reading in.

 Dr. Cook had him come in and have the dressing changed this afternoon.  Andy was the one that took him in and he took a couple of pics with the iPad.  I will spare you.  Let's just say that Josh will have quite a scar on this foot.  The main incision was very large and there are many stitches.  He doesn't look at his foot until it is much more healed which is probably a good thing.

I'll share pictures of it in a while when it looks a bit better :)

I think Andy and I will switch tonight and I'll take Josh while he sleeps in Ben's room.

I'll be sure to wake Josh up every two hours to keep those pain meds running through his veins.

We don't want to take any chances with a lapse in the medication.

That happened last time and we do not, I repeat, we do not want to repeat that experience.

Stars and Stripes and No Fireworks (due to fire hazzard)

This post is a little late because of some camera trauma and also learning how to condense my pictures into a different format so I don't bore you all to tears with my miles of pictures.

So...hope everyone had a happy fourth!

I was so thrilled to get this pieced together before we left for the holiday.

I have been collecting patriotic fabric for years now hoping to do some fun projects.

My mom made this and I just had to copy it :)

It's made using a little tumbler template.

It is smaller than it looks here...I should have put something up next to it to compare to.

My mom's is posted on her blog here.

You can tell better on hers how little it is since the card next to it is business card size.

Anyway, I love how it turned out.  And it actually went together without much trouble at all!

That's an accomplishment for me :)

Saturday afternoon we headed out with a loaded and packed car.

We drove up to Park City...literally dropped the kids off...jumped back in the car and drove down to Salt Lake for a dinner with some other Utah, Dravet parents.

It was presented to me as a "couples" thing but when we arrived at the restaurant Andy was literally the only man there.  When we asked if it was just a Mom thing they said "no" but all their husbands were at home with the kids :)

He was a good sport though and we learned a lot and laughed a lot as we exchanged stories and experiences.

Next time though (this group gets together a few times a year), he will stay home :)

On Sunday we went to church and then celebrated my Father-Law's birthday in grand style.

Andy's sister and family from Tennessee were there making the family complete.

Andy's mom had planned a cowboy/train party...combining Merill's love for westerns and his past career working for Union Pacific.

I love John Wayne wearing the UP hat :)

The kids (Ben especially) enjoyed riding the "four wheeler train" that our brother in law made for Merill a couple of years ago.

Ben's cousin was kind and took him for rides several times throughout the week.

Thanks Lauren!

The night ended with a pleasant visit out on the patio (love that mild P.C. weather!)

and the kids finding a few stray lightning bugs!

(That little speck on Josh's finger in the bottom right picture is one.)

Monday was spent in the water.  Who doesn't love to play in a waterfall?

Or in a hot tub?

(Josh was elsewhere during all of this)

We also went and saw "Brave" that day.

And the kids had to be just that...brave!...with all the action and ferocious bears.

The kids got a little waterlogged on this trip since we went boating the next day.

I was worried that I would have a hard time keeping Ben happy and out of deep waters.  However, I was pleasantly surprised.  He went right into the water with Andy (see the perfect life jacket he's in with the little handle for us to hold on to?  It made it so easy to keep him safe.  Although throughout the few hours that we were there he said "ow" every now and then.  I figured it was something to do with the life jacket so I unbuckled the little buckle that goes underneath between the legs.  Sure enough, when I changed him later that day I found that it had been rubbing against his little leg and gave him quite a sore spot. :( 

He loved the water though!  He always does.  Andy had fun driving the boat and Josh and Abby made sure they had every opportunity to take a ride in the boat.  Matt was happy just doing whatever.

(Abby seems to be the one most absent in these pictures)

We Interrupt This Blog Post for a Seizure Update...

In the middle of writing this post the family was getting ready to go have dinner up at a family camp out.

Ben fell and started having a seizure.  This one didn't stop after a couple of minutes so...6 minutes administered the Diastat...still going...15 minutes called 911...still going.  After the operator dispatched the EMTs he finally stopped at 17 minutes.

When he stopped I told the operator to not have the ambulance come any more...we knew what to do.

She said she was sending them anyway since it had been a long one.  Fine.

The kids excitedly watched for the ambulance as Ben lay on the floor completely exhausted and out of it.

They arrived quickly and started taking all of his stats and asking all of their questions.

8 total professionals gathered in our not too large family room.  Our neighbors from both sides came and checked on us as they usually do...offering help and support.

They gave Ben oxygen but said everything else looked fine.  Consequently, they were okay with us not taking him in.

Initially we were still going to go up and have dinner with my family but Ben's postictal state was a little odd...his muscles in his arms and legs were tightening up and he was in a weird position.  He was a bit grumpy too...who wouldn't be?...so we decided that I would stay home with him while Andy took the kids up.  Ben's muscles relaxed as soon as he fell asleep in my arms.  When the family left I tried to lay him down on the couch so I could quietly go about doing some things.  He would have none of that.  I sat back down with him and he fell asleep again within minutes.  My good neighbor came over while we were there on the couch and talked to me while she unloaded and loaded my dishwasher and cleaned the stove top!  Then she brought dinner over for me!  She's a keeper :)  Thanks so much LaReen!  You're so sweet.

When Ben woke up he seemed normal...normal for after a seizure like that.

We had an enjoyable rest of the evening just the two of us.

Now, we return you to your regularly scheduled blog post...

 Uncle Dave brought home an interesting box after work that day.

Bacon/Maple donuts!

He opened that box and I could just smell the yummy maple but I have to admit, the bacon kind of ruined it for me.

Not for Matt though!  He loves bacon and so he was happy to gobble these puppies down.

I on the other hand took a piece with the least bacon and secretly took it all off so I could enjoy the yummy maple icing.

 :)

 That evening was loads of fun with my sister in law hostessing "Minute to Win it"!

She did a great job and it was so fun to watch everyone doing crazy things.

Thanks Jenny for the fun night!

I'm determined to get a new camera soon.  I'm tired of dark pictures.  My four requirements are...compact, good quality pics, can take stills during a video, and adjusts to lighting automatically.  If any of you out there know cameras and have any suggestions for me I would love it!

 On Wednesday the fourth some of the girls did some little festive fancying up...

I brought some red, white, and blue nail polish (I'm not usually one to paint my nails but I thought this would be fun).  I tried out a technique that has been intriguing to me on Pinterest.

Marbled nails...found here.  I found this tutorial quite helpful.

It was a lot of work but turned out kind of fun.

The younger girls had fun painting their finger and toe nails too.

Adorable star braids courtesy Jenny/Pinterest.  A bunch of little girls were running around with stars in their hair all day...very festive!

The morning was spent making rockets.  Andy had so much fun making Josh's for scouts that he decided to do it with his family.  He stayed up very late one night creating the launcher.  It was fun to see him so excited about something.

It was serious business!

Each family made at least one rocket.

Ben even got into it.

Really, he just enjoyed rolling the rolls of tape back and forth across the table.

While waiting for the rocket launch that afternoon, the kids enjoyed some more water play...

 

and a silly little game I found on Pinterest involving shaving cream and cheetos :)

Grandpa enjoyed spraying everyone down...

 and Ben enjoyed eating the cheetos off the ground...not a keto friendly activity!

Finally, we were ready for the launch...

The rockets went quite high!  You can see in the middle right hand picture that we had to send out scouts to find them on the mountain after they landed.

We got a kick out of Nancy (bottom right picture) on the mountain with the dishtowel over her shoulder.

She is ever in the kitchen making sure everyone has enough food to eat.  Bless her heart.

Bottom middle picture shows all seven rockets.  Some exhibited some team pride while others showed pride for their country.

The undisputed winner was "Cosmic Cosmo" by Mike and Ty Andrus".

 That rocket shot straight up every time just like an arrow out of a bow.  Well done guys :)

 The rest of us enjoyed spectating...

well...most of us.

Ben had a staring seizure shortly after this pic...

and slept for a long time afterward.

I had spray painted a bunch of awesome frames I found at the D.I.

to do a kind of photo booth thing.

We had to "force" some people to get behind the frames, but we got some good ones.

I thought these two were worthy of their own space...

Look closely to see my brother in law hiding in the trees.

Kind of creepy eh?

In the middle of taking these Ben had a tonic clonic which lasted only about a minute but he fell asleep again so, once again, Jenny came to the rescue and finished taking these for me while I held him.

Later that night the kids put on a talent show.  I missed the first three performances (two of which were my children) because of some going to bed Ben drama (he didn't want to fall asleep since he had already slept so much after his seizures)

I snagged these pictures from Andy's mom.

 Abby sang "Fifty Nifty United States" with some of her cousins...

 Matt looked super cute...

and this picture cracks me up! 

 Josh recited the Pledge of Allegiance in French...a little talent he picked up in 3rd grade from his teacher :) 

The next morning we parted with some group shots.

All 19 grandkids.

What a grand time we had!

(still a super long post even with the condensed version of the pictures :(  Sorry.