2014 Christmas Letter

Dear Family & Friends,

We have had an eventful year.  We have taken 2 trips this year.  The first “get away” was this past February.  We were able to see John’s brother who lives in LA and Jennifer was introduced to the “Shopping District.”  The only other trip we took this year was in July to Jennifer’s Sister Julie where the rest of the family descended on her a week later for our Annual Burrell Reunion!  From there we went to Denver for the Medical Conference for Hyrum were we met some wonderful highly skilled Surgeon’s who evaluated Hyrum’s ear.  He has a 9/10 score for Atresia (inner ear).  The only way to get any better would be to actually have the ear canal!  We have been met with Complications of insurance plans.  We hope to move forward with this in January with a change of insurance plans.  We also had friends from Florida come visit in October and the kids had a ball reacquainting themselves once again.

Hyrum is 7 years old and in 2^nd grade. In May we tried controlling Hyrum’s bowel’s with medication instead of flushes.  This was successful for 2 weeks, then went straight down hill ending in a rash the likes we hadn’t seen since he first started having dirty (I was told that I couldn’t put in “poppy” because it is a naughty word) diapers.  We did the appendicostomy in August, this has been working pretty good and Hyrum seems to be adjusting really well.  Hyrum is doing well in school.  He loves his teacher and keeps her on her toes with his antidotes.  She loves having him in her class and we have been told that Hyrum has a calming effect on her classroom.  He loves keeping track of the “buddy bench” at recess in hopes to make sure everyone has a friend.  Hyrum is looking forward to turning 8 years old and being baptized a member of The Church of Jesus Christ of Latter Day Saints and “follow what Jesus has asked him to do.”  Look for an invitation coming in March for this occasion, so if you want this coming to a different address, email me at jennifermsmith@gmail.com.

Karl is in 6^th grade.  He is looking forward to turning 12 next August (he has a ways to go) and getting the Aaronic Priesthood.  He loves going to scouts!  He convinced his Grandpa Smith who was a Scout Master of his own ward to take him on a 3 day Scout camping trip…talk about Cloud Nine!  He even got his own fishing equipment out of the trip.  He will certainly miss his Grandpa for the next 18 months as they have just left to serve an LDS Mission in England.  But his Uncle Christopher (who lives 2 homes down and across the street) has already promised to take him under his wing as he is the Ward Assistant Scout Master.  Karl is a great helper around the house and loves to help out when needed.  As parents we rarely have to ask him twice, sometimes I go to ask him and discover it already done.

Sarah is in 9^th grade and looking forward to taking her drivers permit test in May when she turns 15.  She is already studying for that! Sarah loves to play the violin and the piano (well mostly). The good news is that she sounds great.  She is able to listen to a song, and pretty much play it by ear.  This save’s on music that I don’t have to buy.  Sarah is very conscious of our Elderly Neighbors and check on them frequently.  She has such a kind nature to her.

Rachel will be 18 way too soon for everybody in the family!  She is a Senior in High School and due to some very hard work on her part she is on track to graduate with her Associates Degree this Spring.  She is hoping to do a BioMedical Engineering Degree at the University of Utah next Fall.  She will be getting her wisdom teeth out this week as we tease her that she will lose all her wisdom.  Rachel is now working on her 3^rd piece of piano music that she has written.  Now we just have to get her to put them on a CD to share.  Rachel loves spending time with her family and friends.  She enjoys going to swing dance club even if she and her cousin are the only ones there that they know.

Jennifer has been working at McKay Dee Hospital in the Emergency Department as a Critical Care Tech for a little over a year.  She works part time to cover our family Health Insurance.  After a year of learning curve, she can finally say that she enjoys the work and the people.  By only working 2 days a week, she is able to be at home and keep up with the house, the kids and their homework (well mostly).  The kids have been a great help in keeping the house clean (especially for weekends). 

John is still self-employed.  Despite the ups and downs, we have been the most stable doing this than any other company in the past that’s in a hurry to build a product and let all the programmers go.  We have been doing this for about 5 years now.  The kids have enjoyed having him around more, as he isn’t able to really work when they are home!  But they do love having their Dad more accessible.

May you all have a wonderful Christmas Season with many blessings come your way in the New Year.  

Love the John & Jennifer Smith Family

Flowbee Hair cutting

After Hyrum's surgery, he refused to let me cut his hair. He was turning extremely shaggy as it had been awhile before surgery also.  I had begged for a few weeks to cut it, but got the same response "no I'm fine".  I finally told him, that I wasn't fine with the mop on his head and we needed to cut his hair. He broke down in tears and told me that he was afraid that the hair would go into his belly button.  I got one of those Ah Ha moments.  Spoke about it with John, and he looked online.  I had never heard of the flowbees until afterward.  Here I was thinking it was this new and cool thing, when half the people at work knew what I was talking about.

He wouldn't let us cut his hair until he could see how it worked, so John offered up to be the ginny pig.  Then it was Hyrum's turn...not so happy still.

But he finally calmed down and got his hair cut!

Roasting Dilema's

One of our favorite summer activities is roasting hotdogs and marshmallows over a fire.  This round, John was trying to burn a stump from a tree we had torn down a few years ago.

 Karl & Sarah were trying to lay flat to beat the heat.

 Rachel didn't care, she figured burn it and eat it.

 Hyrum though, got a bit creative with beating the heat.

 He found a mask to wear!

But he loves his marshmallows!

And the tube is out!

As of this past Tuesday Sept 9 we are tubeless. Hyrum did not want it out, did not understand that it would not hurt to come out. So 2 nurses, John and myself held him down while the surgeon snipped the stitch holding the tube in place and took out the tube. He was shocked when it came out. We then talked to him, because the doctor, John and I needed to insert the tube at least once each. So back to holding him down for the doctor. Once that was done, he was semi cooperative for John and very cooperative for me. Since then he has loved everything about his Malone. I can see it in his eye, I'm pretty sure that within the month he will not let us insert the tube. This time, he will be doing it himself. If any child could have a motto, his would be "I do it myself"

The one above was before we used some adhesive remover on his tummy. The one below is after he is all cleaned up!

We were told that the redness would go down and we would be left with a normal looking belly button. At this point, I'm just happy that everything is going smoothly and he seems to adjusted very well to the changes in his bowel management!

Angry Birds

This is what happens when we allow angry bird apps on his iPad.  At least he is being creative!

Karl Birthday

For Karl's Birthday, his Grandpa took him fishing.  He was super excited and became "Monkey boy" on his dad!

 And then he climbed in with Grandma and Grandpa and left with no cake or anything.  I didn't see him for 2 days

Back to Business

Hyrum loves helping in the kitchen.  Found him to be pretty good at grating food

Post op Day #2

I'm not sure where post op day 1 ended and post op day 2 began. As we put him to bed, I discovered that he had leaked poo all down his leg into his sock, all over the sheet covering his play mat and of course because I didn't discover this until he was in bed...so all his bedding now needed changing. So a "spit shower" later with clean sheets we were ready for bed. He slept good and hard. 

His IV kept beeping "downstream occlusion" so we finally adjusted his hand with stuffed animals. Then we learned that when he sleeps on his back his heart rate slows to 58, so we adjusted the monitors to accommodate that.

Then at about 3 or 4 the aide came in for vitals to find the bed soaking wet!  As we got Hyrum off the bed, we discoverd his IV unconnected. So not all the wet came from Hyrum. But he got another wash down, clean pjs, and clean bedding! The nice part was the nurse unhooked his IV. We slept great until 7 when the nurses came in with shift report. His IV proved to be too tired to work any more. But he wouldn't let anyone touch him, so before he could be stopped or slowed down, Hyrum ripped off the tape and IV all in one motion. Afterwards Hyrum wanted his iPad and real clothes on.

Hyrum has done really well for the rest of the day. He has had more chocolate milk today not to mention a couple of dounuts, Mac and cheese and milk shakes.

We are going to need to do an extra flush just to get rid of all that processed sugar!  But we are down to taking only ibuprofen. We cleaned up his surgical site and We exchanged his bandages for new ones.

He handle the flush amazingly well once we convinced him to let us hook him up.

 Everything is looking really good and like we get to go home! He was super excited to ride in a wheel chair. 

But even happier to be in the car with his brother. 

And big brother was so happy to have him home that he let Hyrum play with his leggos well into the evening

Overall a very successful day!

Post op day #1

Our day started early when the nurse thought he should pee at 6 am. Afterwards he started to walk out the door. I asked him where he was going he said "to the play room". I told him the play room didn't open until 9 am. Finally got him settled back in bed and asleep. Then the residents came in at 7 to check on him. At this point he was awake and ready to go. I finally convinced him to wait for the nurses. So he begged for his iPad.

He played for a while. We got the nurses to hurry the order up for his clear liquids. His first choice of the day was a Popsicle. 

He loved that, but little did I know he was watching the time. And as soon as 9 am rolled around, he was outta there. 

He wanted to be in the play room. 

He proceeded to show the volunteer how to play with trains!

Pretty soon he got tired of trains and made his way to the wii. 

And the Xbox. 

And the wii again. In between, the nurse calls into the play room and we go back for meds and antibiotics. But John came down long enough for me to get lunch, adult conversation (not all with just him), and most importantly a Shower!

About 5 pm, we finally got a movie and laid down for the first time. 

But it lasted only that long and we were back in the play room by 6:15. He has decided that he could stay here forever! After the movie I has a bit of inspiration and we tried chicken broth. 

He loved it so much that we got even more chicken broth 

He took one cup with him and we went to find me some real food. The hospital has a "family room" with a fully stocked kitchen for anyone to use. This has been a huge help for us. So I found something he would not want to eat and so I hate the hottest Chinese food that I have ever eaten. What I thought was red bell peppers was really hot red peppers! Yup he had no desire to join me!  When we got back to the room they told us that while we were gone the residents had advanced his diet to a full liquid. This means

Chocolate milk after 2 he finally covered his head and off to sleep for the night. 

Well after I unburied him that is!

Post surgery afternoon

And then he woke up about 5 pm. His brother and sister came for dinner. Dad stayed, while I took the kids to the new(to us) family room that has a stocked kitchen. John and I traded places, but Hyrum wanted to go find them and join them. I distracted him with the "toy room" across the hall. 

He of course found the trains. 

And then he found the wii, and Karl decided to come join him. 

But soon got bored, so he found the cars. The toy room closed at 8:30, so we went back to his room and asked about a mat. 

He played until I tucked him into bed at 9:30 pm. Overall I would say, it's been a great day!