Halloween

We had our Trunk or Treat tonight at the church. Here are my little men.


We had the cutest ever Thomas the Tank Engine...


Then there is Tow Truck Driver Lego Man Noah...


Next is Spy Lego Man Matthew...


And finally, the one who started all of this Lego Man madness in the first place, THE ONE...THE ONLY, Firefighter Lego Man Joshua!

Monday's Memory 6

A couple of weeks ago, Joshua and I spent Friday night together at urgent care once again. We sat outside of Walgreens at 11:30 at night waiting for his prescription of antibiotics to be filled. We were exhausted and so sat in silence for a while…very rare moments. I noticed a click, click, click sound. I asked, “Is that your heart?” Josh said, “What? I don’t hear anything.” I said, “You don’t hear that clicking noise.” He listened again real intently and finally did hear it.

This noise was a beautiful sound to me. My mind brought up pictures from the past of standing at Joshua’s bedside after his first heart surgery when he was 9 months old. As the doctors came by to check on him in the following hours and days they would put their stethoscope on me and say listen. I would listen and hear a very loud click, click, click. That’s the sound of a good working prosthetic valve they told me.

I had to laugh sitting in the car that night with Joshua, that he didn’t know what sound I was talking about…he is so used to hearing it. I remembered having to get used to the sound myself as I would rock him to sleep all those nights after surgery. Since it’s been a lot of years since he’s been a baby and is rarely ever quiet…I haven’t heard that sound in a long time. I love getting those sweet little reminders of the miracles in our lives. What a blessing it is that someone came up with such a contraption and such surgeries to replace things in our bodies when they don’t work. To have such a skilled, intelligent, humble heart surgeon.

Matthew’s Immunologist just said the other day after reviewing all of his heart history…”Isn’t it amazing what Dr. Overman can do?” I laughed and said yes but isn’t it even more amazing what our Father in Heaven can do? In about a year (hopefully not any sooner) we will be there again…putting in a new valve and listening for that click, click, click…the sound of a good working prosthetic valve.

Last day of Soccer

Noah just finished his last day of soccer for the fall. Mike always enjoys coaching the boys teams. It was only 25 degrees this morning when we started playing. They technically aren't supposed to have us play when it is so cold but it was the last day of the season and they already cancelled the game before and the season is only 6weeks long...so... We bundled up really good and played hard.


Noah did get hit in the head with a ball during a game of sharks and minnows. His glasses didn't make it! He said he was never going to play soccer again but that didn't last long...he got back out there.

Here Noah is being the goalie...he didn't let a single ball through!

The most important part of the season...a medal and a cupcake! Good job NOAH!

Appointments

Matthew and "Timmy" are waiting for yet another Doctor appointment...the story of their lives. Yes, Timmy comes everywhere with us these days. Matthew takes excellent care of Timmy.

We received more "Matthew is doing fantastic! I can't believe the difference!" this week. I love to hear it!

These days though, our decisions are much more tough than they used to be. It was so easy to say, yes! Do this surgery to keep my baby alive. Now, we are faced with doctors having a difference of opinion on treatment and our personal preferences and I don't know what to do. (I think we have too many "bosses" ...that's the problem!)

Do we do the vaccine, help with the growth, give extra meds, do sub q or IV, add 4 more professionals into the mix, pull him out of gym??? I don't know, I don't know, I don't know!

I'm sure none of you were aware (so maybe I shouldn't let out the secret) that I HATE making decisions! I guess someone has got to do it.

Monday's Memory 5

On this date, our family celebrates two things.

It is our 13th wedding anniversary! Yay!

Also, we drove up in the big U-Haul truck to our first place in Minnesota on this day 11 years ago. Unbelievable!

(This is Joshua at 6 months of age with his great grandma and great grandpa. Pretty sad that this is the only picture I have of our move...we stopped overnight at their house.)

So, today I write about why we moved to Minnesota.

Since the beginning of our marriage, Mike had been trying to get a job at a home office somewhere so that he could be a part of their Actuary program as he attempted the very difficult Actuary exams. He worked for the St. Paul companies so naturally their home office was in St. Paul Minnesota. A position opened and Mike applied. We had agreed beforehand that we could only move for a certain amount of money. We were set up very nicely in Colorado and so did not want to give that up. Mike called me at home one day and said they had made him an offer and of course for much less than we thought we could live on. We agreed that we would turn it down and hung up the phone. I immediately felt sick. I started pacing and my stomach was turning. I knew we had made the wrong decision. I quickly called Mike back and said we have to take it. Peace instantly came over me.

I didn’t know why we needed to be in Minnesota but we would find out soon enough. If you have not read previous Monday memories…our move here saved Joshua’s life and in another couple of years would also save Matthew’s life. Joshua was 6 months old at the time and had not started passing out yet when we accepted the job. The move went SO smoothly. We sold the house before it ever went on the market. I thought I would hate leaving family but that peace stayed with us and made it all ok.

We had just a few weeks to spread the news about our move and be on our way. EVERYONE said why are you moving THERE? It’s so cold and their state bird is the mosquito. Come to find out, most of those people had never even been here before. We were ready for an adventure and we have loved it here. Mike loves that there are actually 4 seasons. I remember the first spring here I said…Oh, that’s where the saying “April showers bring May flowers” comes from. It is beautiful AND, I’ll have you know that the mosquitoes have been so much worse in other states we’ve visited than they have ever been here. The cold is not so bad. Maybe it’s just more tolerable when I remember WHY I am here. I’ll be a little chilly for a few or 9 months a year if it means I still get to hug ALL of my children and see their smiles every day.

“Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths.”

Happy Monday to all and Happy Anniversary to my wonderful husband, Mike!

Bathroom remodel

Just some pictures of the bathroom we are remodeling. It's been fun but we are so ready for it to be done.

Our babysitter while we try and work.

Mike cutting tile out in the snow and the 20 degree weather in October.

The bathroom floor

The bathroom floor entrance

The toilet area



The shower

Track & Field

Every fall the elementary school does a track and field day for Physical Education. Each grade runs at a seperate time around the field outside in 3 different groups and then you do a family walk around once. The first year Matthew did it, the Phy Ed teacher had some high school kids there to help and so one of the kids ran turtle in the back and stayed with Matthew. Last year though...nobody ran with Matthew. They followed the other kids that were behind but left Matthew in the dust. I am still mad at myself that I did not go out there with him. He was WAY behind everyone else. Out there all alone. The other parents start chattering around me..."Look at that poor little boy." I wanted to cry for him. I had two other little ones with me though and didn't know anyone I could leave them with there and so I stayed and just watched him struggle. Grrrrrr! One of those things a mother can't forgive herself for.

Anyway...this year I made sure I could go run with him. I'm always so proud of him for trying and for finishing! 3/4 of a mile is a long way for him. Good job Matthew!!! Noah did great in his race too! Yay Noah!


This is part of the group we started with - There were about 30 kids in a group. You can't see Matthew though - he's the camouflage coat.


It's just us out there.


We finished!


Matthew survived.


Here is Noah running his race. He is in the red jacket. Go Noah!

Monday's Memory 4

Joshua currently has Influenza and Pneumonia. In honor of this…today’s memory takes us back to October 2004. Joshua is 6, in 1st grade and Matthew is 4. One of the all-time lows in our household. (Sorry for the length.) Background info…we’ve been through 4 heart surgeries between the two boys by now. Matthew has been extremely ill for a good year or two, in and out of the hospital with asthma type issues; sick all the time. I can’t remember for sure, I was in a fog all that time. We are stuck in survival mode. Joshua and Matthew become deathly ill at the same time…no exaggeration. I take them to the Pediatrician. Matthew cannot stay awake, he is so sick. The doctor says they both need steroids for trouble breathing, pulmicort and albuterol NEB treatments every 2 hours for the next 24 hours and zithromax for pneumonia. The nurse gives Matthew a shot in the butt of antibiotics. He wants to put Matthew in the hospital. I said “I can’t have one at home and one in the hospital!” He said “Fine, I’ll admit them both. Josh is sick enough.” I said “That’s not where I was going with that. I have everything at home to care for them.” He made me call Mike at work to come home and help me or else he would not let them go. It was a long 24 hours. But, things started to look up. The boys seemed to be improving. Joshua gets better enough after a week to go back to school.

Joshua sick at our Halloween party

During the next couple of weeks though, he doesn’t progress anymore and still seems pale and tired. One day I went to pick him up at school and he walked over to me and dropped on the floor and started crying…SO out of character for Joshua. I bent down and asked what was wrong and he said he had a headache all day. (He’s always described any kind of pain or illness as a headache.) I drove straight to the Pediatrician’s office and said someone needed to see him…this was not right. The doctor saw him, did a chest x-ray and said you need to have someone at Children’s Hospital look at him tomorrow. Matthew had an appointment already with his Pulmonologist so I said I would see if they could see Joshua as well. They agreed. The Pulmonologist took one look at that film and sent us downstairs to cardiology. I couldn’t believe it. In half an hour they were telling me that the pneumonia had ruined Joshua’s prosthetic mitral valve that had been put in when he was 9 months old and was supposed to last until 5th grade. He was in heart failure, the valve needed to be replaced. They put him on new meds to get rid of the pneumonia and control the heart failure. When the pneumonia cleared they would do the surgery. The doctor said he could continue at school as long as he felt able. The next morning I went to wake Joshua up for school. He was so pale and weak, he just sat on the floor by his bed. He didn’t have strength to get dressed. That really scared me. I called the Cardiologist and they said to go ahead and bring him down to Children’s to be admitted. They wanted to figure out exactly what bug we were dealing with so they could treat it as quickly and as aggressively as possible so they did a bronchoscopy where they put you to sleep and put a camera and scope down your throat into your airways to get samples. They figured it out and said we are on the right track with the meds; we just have to wait for him to get stronger.

Joshua waiting for surgery day

They took him in the following week for surgery to replace his valve. It was the week of Thanksgiving. For some reason, my kids love to be in the hospital for holidays. Some family made it into town to help with the other children. Mike and I had Thanksgiving dinner in the waiting room of the PICU without our family. Joshua got through surgery and recovery remarkably well; no complications.

after surgery in PICU

Eating an Icee after waking up in PICU

They told us this valve should last him until he hits his big growth spurt if we can keep him healthy. (So, you can understand why I get so nervous about these bugs and this pneumonia!!!)

Look how excited Matthew is that it was not him to be tortured...this time!

Two weeks after Joshua came home from the hospital Matthew was admitted. He was sick…really sick…AGAIN!!! They treated him with NEBS and antibiotics but couldn’t figure out what he actually had. After several days he was getting better though so the Pulmonologist said he was going to send him home. I had so hit my limit…it wasn’t like me to tell a doctor no but I did. I told him I’m not taking him home until you find out what is wrong with him. I’m tired! I can’t do this anymore! He ran one more test and we found our answer. Matthew’s immune system doesn’t work! That explains it! He had not built up one antibody for all of the vaccinations we had given him over the years. He has Hypogammaglobulinemia and T-cell dysfunction. We did the first IVIG infusion in the hospital and he improved SOOOO much. It’s amazing what the right diagnosis will do for you. Matthew wasn’t completely better yet…there was still work to do, but that story will come later on…right here…only in Monday’s memory at the state of zenn.

And now a message from our sponsor: The IVIG is made of antibodies from the blood of 1000 - ONE THOUSAND healthy people. That is ONE treatment. That doesn’t count the donations that may have been tested and illness or infection found so it can’t be used. Matthew receives this IV every 21 days. That is a lot of blood. If you are able, make sure you’re donating blood! And, I know we’ve all learned well that we need to share but…NOT the germs…stay home when you are sick!!! Thank you!

Monday's Memory 3

The next two weeks of our lives are all kind of a blur in my mind. I do know that I did not leave that hospital once. Everyone else was freezing their tooshies off outside…it was the coldest Minnesota winter we’ve had in all of our 11 years here so far. I do remember that surgery day came on the 23rd of December, two days before Joshua’s first Christmas. The surgery went as planned, was uneventful thankfully, and Joshua came through wonderfully. They said they were able to fit a nice big valve in there that should last him until about 5th grade. Since everything happened so fast, I don't recall any family being able to come until Christmas Day. The nurses warn you before they bring you in to see your child what they are going to look like…puffy, swollen, tubes and machines all over. I actually thought of my niece Caitlin who had passed away more than 2 1/2 years earlier when I first turned that corner of the PICU and saw my baby lying there. I’m not sure why. I like to think that she was around, helping us through the ordeal. My experience of taking care of her during her 18 short months on earth was the best schooling I could have had for the children that were going to be sent to me. A reassurance that God knows so much more than we do, that He is in control, and that we need to trust Him. I think often of what I learned during that time with her. The first time Joshua started “rattling” after surgery the nurses kicked us out of the PICU. They said we didn’t want to see what they needed to do to him. Then the next shift came on and Joshua was making that noise again but this nurse didn’t kick us out. She suctioned Joshua by sticking a tube down his throat to get all of the junk out so he could breath easier. I said, “That’s all they were doing when they kicked us out! I had to do that to my niece dozens of times!” They never kicked us out again. Thank you Caitlin, Jeff, & Jaymie!!!


I can’t remember how long they kept Joshua intubated and asleep. It was several days. Christmas came and went. There is a man who comes every Christmas to the children’s hospital and plays his harp. For hours he moves from spot to spot throughout the hospital playing beautiful Christmas hymns that remind us of our Savior. It is so soothing. Bishop Hill and his wife came to visit one evening and brought Joshua a miniature Christmas tree and a stuffed Snoopy and of course dinner for us. I was touched that they left all 6 of their children and spent a couple of hours with us…people they didn’t even know. Victoria and Vicki came with pizza and sat in the waiting room with us one evening talking and listening. They were nice breaks. The days are so long sitting at the bedside of a sleeping child listening to the beeping and watching all of the numbers. It’s funny when more than one of you are there visiting…it’s always a race to the lamp that is warming the sleeping child’s feet when it turns off…who will get to turn it back on. Yes, very long days! When they do wake up they are SOOO thirsty and just want water to drink but they have to wait…for hours. They are miserable. Joshua did not sleep for 3 full days and nights after they woke him up…thanks guys! We tried giving him every kind of drug to make him rest but nothing worked. I was exhausted!!!!!

The worst part of being out of the ICU and up on the floor is that they started Josh on coumedin and so he needed labs every day that had to be a fresh poke; they couldn’t use an IV site. He was only 9 months old and little so they never could get it. The first technician would try twice and then send another who thought they would be able to get it, two more pokes later they usually got it.

I remember Joshua not being able to sit for several days. I kept setting him up and he would fall over. Nobody warned me of the physical problems that come from being asleep for so long. He had to relearn things and build up strength. It was difficult to remember to pick him up the right way...NO picking up under the arms! I remember the Pillsbury doughboy came to visit us and some school choirs came by caroling through the holiday week. New Years Eve came. My parents, my sisters Emily and Jeni, and Mike’s parents were all there so we had our own little party in the family waiting room there with pizza and card games.


Joshua loved to roll through the halls in the red wagon. It was January 1st when we got to go home. Our family that was there had to fly out. We tried to get Joshua excited about his Christmas presents that still sat under the tree waiting to be opened. He wanted nothing to do with them. We ended up opening them for him. He did not feel well. Aunt Michelle came to visit. The next day he started having terrible diarrhea and was re-admitted thanks to the rotavirus that he must have picked up from the hospital. At least being contagious with something gets you your own room. The nurses had been very strict about kids sleeping in their cribs with the railings up. Joshua and I were so tired, we fell asleep on the chair in our room and the nurses actually left us alone…we got a few hours of some much needed rest…it was nice.

The blood draws were even worse this time because of dehydration from the illness. The lab people would give it their best shot and then finally would page the cardiologist. He would come and hang my little baby, who just had open-heart surgery and was sick besides, upside down off the bed with a nurse holding his legs and a nurse holding his arms and poke him in the neck for the blood draw. He was so weak he could barely cry. This happened daily. It was so sad to watch! I think we finally got to go home on the 5th of January - about 17 days total in the hospital. Oh happy day! Joshua continued to recover without any further complications.