Letter to Ruby : May 28, 2015

May 28, 2015

Dear Baby Ruby,

     Guess what? We can’t wait for you to get here! Charles has been dreaming of holding you since Thanksgiving morning when we told him you were coming. He talks about it all the time. How he is going to sit and just hold you all day long. Every morning when I would walk him and Orson to the Kindergarten playground to play until the bell rang he would stand by me for a while each morning and proudly point out my pregnant belly to anyone who would turn our way and say, “My mom is having a baby you know.” And his eyes would shine and you could see him dreaming of you and he already loved you and he hadn’t even seen you.

      Maelee has been praying about you since she was 2 years old. She started to talk about you, not that she wished you would come, but that she knew you were coming. It was always matter of fact when she referenced her sister, you. When she first started praying about you it was before we had told her we were pregnant with Charles. When we told her we were pregnant then, and then found out it was a boy she didn’t seem worried. She was older when the same thing happened with her second baby brother, finding out it was a brother and not a sister I mean. She was more upset then. Impatient I think for you to get here. Then after Dad and I went to the ultrasound when we found out Maelee’s sister was finally coming we went right away to see her at her school. She was eating lunch and she knew we were there to tell her if she was having a brother or a sister. She jumped up from the cafeteria table and ran to meet us halfway for the news. Happy isn’t a strong enough word to describe the look on her face when we told her she was having her sister come. Now, especially since my stomach is so big since you are almost here she is always stopping throughout the day to give you a hug. She tells me, “I can’t wait to have my baby sister Mom.”

      Orson, your big brother, is the youngest right now. He seems a little worried about sharing me with you. You two will have the most time together before he starts school. We will have our routine together when school starts again, the three of us - while Dad is at work and the older two are at school. If you feel squished sometimes, its him gabbing his elbow into my belly trying desperately to make himself comfortable on what’s left of my lap. He does talk about you and what he will help you to learn while we are driving in the car. Morning time in the car is his deepest thinking time to think before he speaks. He has mentioned you often during these last few weeks. So at least he has a little sense of you coming into the family.

We all love you very much and will see you soon!

Love,

Mom

Letter to Orson : May 27, 2015

May 27, 2015

Dear Future Orson,

Last night we both had a big scare. At 12:40am you woke up frantically screaming my name. I went in and from the look on your face I thought you had a scary dream. You saw me and began to cry and stuck your little closed fist out and told me through sobs something about pulling your button.               

 

My heart froze. I expected you to open your fist to drop the button into my hand. Between my own fear of it finally happening, your button coming out accidentally while you are sleeping, and also the look of horror on your own face I stopped breathing. You then dropped into my hand one of the pieces of tape that goes on your dressing each night for your button site. You handed me the little crumpled up paper tape and looked so genuinely concerned that you had done something bad. I checked your button and it looked like everything was in place and fine, you must have just tugged on it, it was twisted around your leg pretty tight when I came in.  I hugged you and told you it was OK that your button was alright and that you were OK. Then Dad helped you go to the bathroom and you came back to lay down. You started begging us to please unhook you from your milkshake, but it was only 12:40 and you wouldn’t be done with it for a few more hours so we needed you to keep it on.             

You were still so shaken up. I think what I realized then was that you have some serious stress and anxiety about this button too.  I know you talk about having a hole now in your stomach and that you never want your button to come out because of the hole that is underneath it.

Dad and I don’t want you to have it either. We wish that we could take it away and not have you do it. I tried really hard to help you eat well enough that we wouldn’t need this button. You and I and Dad when he was home from work spent hours at the kitchen table together negotiating and pleading with you about food. Then during the day when it was just us I would follow you around asking what sounded good to eat.

What the goal is for you and this button and doing the feeds at night is to boost your weight now and for the next couple of years, which will in turn increase your lung function. With stronger lungs starting now you will have the ability to manage Cystic Fibrosis better for the long term of your life.

One day the button will be over. It will come out, for good. The piece of plastic sticking out of your stomach will be gone. Your hole on your stomach will heal. You will have a pretty gnarly scar to show to your friends. They will be impressed. You won’t have cords attached to you every night when you sleep. You will be able to manage your weight on your own. But until then, Dad and I will help you with all that we possibly can to make this a success, to help to improve your weight and in turn increase your lung function for the long term.

Love,

Mom                      

What We Learned From All the Funerals

My husband and I think and talk about the first four years we were married before any kids were born often. We think of some special trips we took. We think of working full time and getting through college together. We think of the other places we lived and the people that got us to where we are now. Another thing that we did a lot in those first four years of marriage that we think of are the funerals we attended.

Within those four years we attended the funerals of my Dad, my aunt, an 11 year old cousin, Frank’s grandmother, Frank’s grandpa, Frank’s Uncle, a hair dresser I worked with, a close friend’s father, a young scout aged boy Frank was an advisor over at church, and a three year old cousin.

With the attendance of each funeral we would talk more about the Plan of Salvation together and what we knew to be true. Some of the people that we went to funerals for died due to old age, but the majority were unexpected heart breakers, or long drawn out painful diseases. Each funeral we would discuss more in detail our own funeral plans and what we hoped would happen before we died, and also what we would do if the other person died before those hopes were fulfilled. Sounds weird, but it was really comforting and interesting to hear what each other had to say about it. Also because the majority of these funerals were unexpected and devastating it helped us to grasp on to the idea that we do only have once chance on earth to make the best of our lives, and we have no control over when our chance on earth is over.

So beside the fact that it helped us to plan our funerals before we were 25, we also made an effort to keep the “you only live once” mindset at the forefront of our decisions and our relationship together. We used it to see time together, holidays, etc. as a chance to make the best of it. When we had our first baby and we found out she had a chronic disease it helped me not to ponder as much on the possible future events of her life in a negative way but to remember what we had learned from all those funerals and focus on making life as awesome as possible right now.

For some reason it also caused me to have a fierce aversion to anyone mentioning or referencing future tense me having another kid. I had this baby girl, and felt I needed to focus on her and helping her to have the best existence, I felt I could not think about other children I did not have yet. On her first birthday I kept thinking, “what if this is her only birthday.” It sounds totally morbid, but I just kept thinking that over and over again.

Then as all the current family pictures can show this attitude didn’t last. Impressions, thoughts, ideas, (good ones) would come from a Father in Heaven who loves me and my husband very much, our hearts were opened, and we were blessed to have our 2 sons. However as each of these sons came to us, we always assumed as with our first daughter that we were done having children.

The time we had after our second son was born was the longest period of time that passed before the impressions came that another baby was to come to our family, the baby girl due now within the month. It was a long enough period of time that we got very used to the idea. He (Orson) was going to be our baby.

His older brother started Kindergarten this past year and because of Orson’s late fall birthday I planned on having 3 years at home with him alone until he would start school as well. My Mom encouraged me to get my substitute teaching certificate so I could start subbing this past school year and get back into the classroom so as to be more prepared to have a classroom of my own when my baby, Orson, started school himself.

It was such a great year. Orson and I worked out a lovely routine together. He is old enough to use the bathroom on his own and talks very well so he was such a fun big boy to be with. He and I became such great friends as we focused on each other during the day as the rest of the family was gone. It was a brand new experience for me as a mother to have only one kid home to look after who was old enough to be independent and talk with me and enjoy. Also, I loved my time in all the different grade levels I could find to sub in at my two older children’s school. I had a little taste or working outside the home again. Orson had a taste of spending time with his incredible Grandma and also became a special friend to her.      

So the last week of school was very bittersweet as I saw all of the kids graduate one more year of school, see pictures from the beginning of their school year and how much their have grown and changed, and also to know that Orson and I’s time together on our one on one adventure is over.

Of course it goes without saying we are thrilled to be going into a crazy wild summer with the entrance of our baby Ruby into the family. We are all on pins and needles for her arrival and can’t wait to start holding her and loving her. But I can’t help but turn around and salute the end of the era I had with Orson last year and be so thankful for that fun year we had together with just him and I during the weekdays. As for Orson, he is thrilled for his sister, but talks about his concern about sharing my lap. Good luck buddy, just know your not the first to be dethroned from Mom's lap. The other's have survived it nicely. 

 

 
 

Sleeping With Joey : An Alarming Adventure

Part of the new routine of Orson’s mic-key button (Its really called a mic-key button I promise, it’s not just a cute name we came up with) is of course learning how to do the continuous feeds at night. We had several very well trained professionals’ (one was so well trained her bill was $300 for her 7 minute explanation in the hospital) show us how to use the Joey pump (again the real name, not just a cute name we came up with) that controls the feed throughout the night, and we feel like so far we have that part down. The actual operation of the machine, we can do it.

There are concerns however. Part of having the pump and using it is, it is hooked up to an IV pole (yes we are the proud owners of an IV pole, maybe one day I will paint it). This IV pole has to be close to Orson’s bed, as close as we can get it actually, so that the tube that goes from the bag that is feeding him to his stomach has plenty of leeway for him to sleep comfortably. Concern - Orson sometimes roles out of his bed. The IV poll is metal and has 6 metal octopus legs that hold it upright, pins, and castor wheels as well. Solution, the IV pole is all tucked in with several layers of blankets, plus one currently unused doggy pillow pet to provide a nice soft cushion in case he does role out of bed.

Another concern is keeping the tubing straight and preventing Orson from wrapping it around his body. He usually sleeps pretty sound but we have come into check him over the past couple of weeks and some nights it has been wrapped around his neck and or stomach. Big concern. I have found that there are dozens of message boards across the internet of parents with this same concern and asking others for advice. “So I have this child who is getting the extra calories they need at night, but how can I make sure they don’t strangle themselves at the same time?” Solution, prayer, lots of going in and checking on him, prayer, trying to convince yourself that the tubing wouldn’t be able to really strangle him, and prayer.

Also we have been warned several times by the surgeon that in the beginning and throughout the whole time he has his mic-key button it could really at any time fall out (the balloon holding it in place from the inside could pop and the whole thing falls out), sometimes it happens while the kid sleeps. If it comes out and isn’t noticed (because they are asleep) or isn’t replaced with another button or “foley” which is a temporary replacement tube for the button until an actual button can be obtained if the original pops they the body will heal at such a rapid rate that within 2 hours the surgery will need to be done again. Solution, a foley is kept with me at all times. A new sealed button is on the shelf at home, but if we are out and about and it happens the foley will need to be used until we can get to the button.

We have a goal from our CF team to get Orson to 2 cans of his prescribed formula a night. We worked our way up to it and are currently there. Now we have to figure out how his body responds to it. How fast do we set the pump for? We have been testing different amounts per hour to see what is best. Is he experiencing pain from the use of the pump? Yes it seems sometimes he is. Because of his pancreas not functioning he needs enzymes, of course even with these feeds at night. So do we wake him up in the middle of the night to take them. Yes. He takes his enzymes before he starts his feed and then again when its over between 3 and 4 in the morning. Lately he has been asking for an antacid as well at 3am because of some stomach pain.

Frank and I have a little routine worked out. The alarm goes off on the pump when the bag is empty or if any other problem such as a kink in the line occurs. I have a monitor on my side of the bed that is literally 12 inches from my ear so I hear the Joey alarm first. If it isn’t just a kink in the line, or Orson needing to go to the bathroom (he is drinking for 8 hours straight so he needs to go at least once during the night and be unhooked from his pump) then Frank and I have our adventure.

I bring in the 10 cc’s of water in a jumbo syringe (we need that to flush the line going into his button to make sure it is clean and all the calories he can get are pushed in) and also a cup with water, a straw, and his 2 enzymes. I use my cell phone to light up the button while Frank connects the syringe, flushes the line, puts a clamp on the feed line so it doesn’t leak formula all over the place. He then carefully so as not to hurt Orson lines up the tiny black line with the other tiny black line that unlocks the feed line from the button and disconnects it, then he closes up the button and takes Orson to the bathroom again (he will have already gone once in the middle of the night) and then carries him back to bed. Orson very sleepily takes his enzymes and then most nights rolls over and falls asleep, but some nights stays up for an hour trying to fall back asleep.

I am personally so sincerely grateful for a man like Frank is who is absolutely there and willing to help with all of this. I know there are parents who do this alone. I cannot imagine that, it’s overwhelming enough doing it together. So my hat is off and wild applause is given to a caregiver doing it alone.

A routine is being established. The kids all like to take turns setting up Orson’s pump at night, even Orson loves a turn of course. Frank and I are getting used to our part throughout the night. So far the alarm going off doesn’t wake up the boys. It will be interesting to see how this all goes when I am also getting up to feed the baby in a few weeks and Maelee is sleeping in the boys room as well. It’s a good thing it will be summer time so we can sleep in or take naps (ha ha, good one right!).

Frank and I are both very grateful that Orson has been so accepting of his button. He is asking questions and learning about it, helping take care of it, and dealing with the new feelings that a balloon in your stomach brings to him. He tells me “Mom my button is bobbing up and down again, you should give me Tylenol.” We love the illustrated Book of Mormon stories and use it with our kids for scripture study at night. When I think of how Orson has done so far with his new button I keep thinking of the picture of this guy.
 

 

It is part of the story of Alma the elder and the burdens that were placed on him and his people.

Mosiah 24:15 “And now it came to pass that the burdens which were laid upon Alma and his brethren were made light; yea, the Lord did strengthen them that they could bear up their burdens with ease, and they did submit cheerfully and with patience to all the will of the Lord.”

How awesome is this illustrated man, a big goofy grin on his face with that heavy basket. That is how Orson and we “his brethren” are doing this, the Lord is strengthening us because we are asking Him to.

Frank and I are still working on “submitting cheerfully” to the new change, but we also draw strength from watching how well Orson is handling it. He is pretty cool, and his brother and sister are helping him rock it as well.  

An Example of A Decision Not To Be Made In the 3rd Trimester

A favorite beauty school instructor of mine told us a story about when she was pregnant and had very long beautiful hair. She said that in her last trimester she thought it would be fun to chop off her long hair into a short tight bob. She said she spent the rest of her pregnancy and the year or more it took her to grow it back out regretting this decision, often with tears.

This is a woman whose advice I hold highly. Highly enough to remember the story with each of my pregnancies and feel like I have been careful to not make rash hair decisions while under the influence of increased hormonal powers. However I can now see that such logic should be applied to other areas and my decision making while pregnant.

Ace Hardware recently had an amazing sale on their “sample” sizes of paints. A sample custom color which was regularly $4.99 went on sale for $1 for a few days a month or so ago. This is basically my dream sale, hands down so exhilarating to stand in front of the paint chips and think to myself “I can have four of you for $4!!!!!”

So I found that before the sale was over I had shopped on 2 different days and went to 2 different stores to end up with 8 new colors of paint. I wasn’t sure what I was going to do with my $8 well spent but I was itching to do something. That’s when I made this wall happen in our front room.

 
 

I was super excited about it while I was painting. Then the instant I finished and stood back and realized that I had not only painted the colors of the Jamaican flag once, but twice on my wall I was disappointed with my 3^rd trimester decision and my new paint. Hey I love Jamaica. I have never been there, but Cool Running’s is one of my favorite movies. Still though, never my intention to accidentally paint the flag on my wall twice. The trouble was I had spent 5 hours on the project one night, staying up way way way too late and I couldn’t help but feel a little sad to cover back up the work I had done. Each day though I would walk past it a million times and think, barf that looks terrible.

Good news is, the wall is officially fixed. Orson even helped me screw back in my light switch plates for one of his “chores” while the older kids were at school. Now its very much more normal looking, calming with the blue, and I no longer “feel the rhythm, or the rhyme” as I walk past the wall.

Hats off to Ms. Terri for teaching me not to drastically cut my hair while I am pregnant, and here is another one to teach to the next generation; enjoy the paint sale, but don’t get crazy with the stripes. 

A Soldier's Love To His Mother

Max (my Grandpa) was a soldier in WWII. His life influenced a large circle of people. I think of him often and the different ways he changed my life for knowing him and holding him in my eyes as an example to follow. 

Max honored his mother. All of his letters were first addressed to her before anyone else. He also closed every letter with "your son" showing to me how highly he thought of being her son. He said, "you can always get another sweetheart, but you can never get anther mother." He consistently thanked her for any littler thing she sent to him during his service in the war, and was always sending her off some trinket or souvenir - showing her he thought of her often. He encouraged her to take little vacations or fix up the house with the money he sent home to her every paycheck he received during the war. When answering her questions about what exactly he was doing during his service he always took the time to assure her he was "being good" and not participating in the smoking and drinking that the other soldiers were doing. He loved her cookies! He politely begged her to send them to him and then bragged about how tasty he thought they were and wrote of the fuss the other soldiers made of them. Max treasured his Mama.

A few words to his Mama from Max's letters, written between May of 1943 to Dec of 1945 

"As soon as I can get too or have one of the officers do it for me - it will be a day or two - I'm going to send you a forty dollar money order and I want you to put it into a living room set. You know a couch and nice chairs for the front room. See, I'll get the good out of the nice couch on long evenings with Rosalie when I come home. This money is honest money that I have worked for Mama, so don't be afraid of it. I am keeping over twenty dollars for my own use and what I am keeping is the dishonest money. Now Mama, if you don't use the money as I say or in some useful way, I'll start smoking and drinking wine. And by sending this money to you to use will be just that much I won't gamble away, so Mama you had better not dare put it away for me in any other way than that set."

"All the guys that had bragged about their mother's cooking have all took down their signs and you are the new queen Mama. Thanks lots. I didn't expect to get any so soon I'll bet you used up all your sugar making all that candy and cookies for me. You shouldn't have made so many."

"My Dearest Mom,
I want to wish you the happiest Mother's Day ever and that by the next one, I'll be there to wish you a happy Mother's Day.
All My Love,
Your son,
Max"

"I don't see why you and Dad don't take some time for Lakeside fishing or somewhere. You all need a little trip and rest. I always hear of everybody else doing that but never you."

Four Lessons Learned From My Mother : A Maker of Home

My mother is truly a maker of home, and by watching her I was able to learn how to make my home with my husband and children now. Thomas S. Monson said, “One cannot forget mother and remember God. One cannot remember mother and forget God. Why? Because these two sacred persons, God and [our earthly] mother, partners in creation, in love, in sacrifice, in service, are as one.” 

Lesson One : Love Old Ladies – In our neighborhood in Phoenix growing up there was a grandma friend on each end of our street that my Mom would look after. She would drop things off to them, food, or other beautiful things. What I liked best is when she would send my sister and I to deliver these presents for her. One of the women we would visit with mom’s gifts in hand thought I was a boy because I had very short hair. To combat this, I would always wear earrings when I went to see her so she would stop calling me a little boy. Then she would start to say “Why would a little boy like you wear earrings?” which of course my older sister thought was hilarious. But then she would accept the gift from my mother and open up her photo album and go through it with us. Every few minutes she would tell us that her birthday was on July 9^th. My sister and I still call each other on July 9^th to remind each other of this birthday. It was by doing this service, shown first by my mom and then done in partner with my sister, that I learned that it doesn’t’ matter if someone can hear you (even if you are vehemently denying that you are not a boy, but a girl) or if they are way older than you can ever imagine being yourself you can communicate with them still through love and service. She sent us over there not to bring the food, but to give us a chance to love our little old lady neighbor.

Lesson Two : Don’t Watch, Work – Mom is ALWAYS serving in some aspect every day the people she goes to church with on top of serving her own family. I watched her dream up and carry out extremely awesome Cub Scout activities for the boys at church, visit her “sisters” from church in the hospital or bring them dinners, communicate love to the teenage girls at church as she attempted to leave all of her cares at home and went weekly to spend time with them on Wednesday nights also dreaming up and carrying out extremely awesome activities for them. When there was a family party for church I began to notice a pattern, we were always one of the last families to leave. It didn’t bother me because it gave me more time to run around like a wild women with my friends and little brothers, but I knew we would be one of the last ones to leave, and I knew I could find my Mom in the kitchen doing dishes if I needed her. Still everywhere she goes, if someone is working she is helping. She doesn’t watch, she works. No matter how short or long of a visit any of me or my siblings get from her or give to her now that we are older, we without exception feel lifted by her.

Lesson Three : Pack Good Snacks – School lunches, zoo pic nics, park dates, (even during Sacrament meeting, the hour long family meeting at our church where we take the emblems of the Sacrament and hear talks to bring us closer to Christ - don’t worry we had reverent snacks at church), we were sure to have the best packed Mom purse in town. Mom never took us anywhere that she wasn’t prepared to whip out something awesome if we were hungry. She would pack the best field trip sack lunches ever, and knowing these things were taken care of, that I never had to worry about needing a little smackeral and not having it was of course a great comfort to me. The comfort came not so much from the food in my stomach, but from knowing that Mom thought about me and brought this because she knew I would enjoy it. I like to think that I am able to do that now for my own kids, but only because I saw the importance and awesomeness of it from my own Mother’s snack preparedness. Good snacks are kind of a big deal. 

Lesson Four : New Kitchens and Curtains Aren’t Everything – My parents lived in their first home for 18 years. They slowly added their own touches to it, turned the garage into a big bedroom for their three daughters, Mom carved out amazing flower beds and gardens in the front and back yards, and I think they may have built a shed in the at some point. But I remember the biggest deal, the center jewel on both of my parents crowns, was when they after living in their house for 16 years were able to remodel their kitchen and bathrooms. When it was done I remember how excited Mom was. The finished work was beautiful and definitely needed. Also part of this beautification was the picking and installation of real deal “drapes” in my Mom’s living room. I remember what they looked like still (Floral cream, pink, blue, and soft yellow) and remember sitting in that room and staring at them after they were installed admiring my Mom’s selection. Soon after this work was all done, my parents got the opportunity to move to another home in Tempe, where they felt would be a great place for our family to have a new chapter. This home was bigger to fit the 8 people that would live inside it, but would slowly need all of those same remodels done again. I remember being so sad to leave the drapes behind and the freshly remodeled touches but Mom assured me that there were much more important things than those ahead of us. It serves me well now to remember that all of those remodels and fancy curtains didn’t happen until over a decade and a half of my parents living in that home. Nothing about our family relationships became somehow better or made family life easier because of fancy curtains, or new countertops, but what did make our home better and our family what it was then and is now, is my Mother.

I am grateful for my own Mom on this coming up Mother’s Day and always for the countless lessons she has taught and teaches me still. Because of how she lives her life I am blessed and am becoming shaped into a maker of home myself.  

For the King of Brave to Remember

I never planned on starting a blog about all of this CF stuff, but it all kind of came about over these past few months and now I am so glad I did because I have gotten a chance to record stories for the kids to have later. So this one is still fresh in my mind and I remembered to take pictures so here is Orson's picture diary of his surgery.

Walking into the hospital carrying the backpack he packed for himself the day before.

Got through all the pre-op stuff. He even convinced the nurse to take his blood pressure on his leg instead of his arm because he freaks out when the machine squeezes on his arm. His nurse gave him his little Mickey doll and said he could keep his balloon hat. Besides starting to get hungry he was in great spirits.

Surgery is over and Orson has calmed down. We are in Orson's room. Frank looking out the window to see the MCC Institute building where him and I met. Not that he was probably thinking about that when I took this picture though. It was another blessing that the PCH surgeons were out of our insurance network so we ended up doing the surgery in Mesa which was such a huge time and stress saver.  

How thankful we were that he was able to sleep. He would wake up to find his bed moved by the push of a button, which clearly was very thrilling.

Charles let Orson take his "cloud blanket" with him to the hospital so he snuggled with that a lot of the time. He was surrounded by friends in his bed.

When he woke up and got his bearings in the room is when he asked me if I thought he had been brave for his surgery. Frank always tells the kids that he is the "king of the castle" and they are "dirty rascals" so because of this Orson is always trying to find something he can be the king of. When he asked if I thought he was brave, and then asked if he could be the "King of Brave" I was in 100% agreement.

That morning of the surgery we happened to pull up next to the gas pump across from a very special friend of the family who proceeded to drop off a grab bag to my Mom at our house later that afternoon for Orson. When Mom brought the kids to visit that evening she brought the bag with her. Every piece of treasure in the bag was incredibly appreciated as distractions for Orson.

We were reading David Shannon's "Alice the Fairy" as our first nurse was in the room. The book mentions Alice making her Dad a crown and Orson talked about how cool it was. The nurse heard him and minutes later brought in this crown for him. It was perfect for the King of Brave.

We were shocked at how visibly the adrenaline and joy of the visit from Maelee, Charles, and Bebe brought Orson. He started playing ball with them and moving around like a champ. Just what he needed to feel a little better, and just what we needed to see that he was acting normal. They helped him forget he was hungry.

The sibs were also impressed that the bed moved with the push of a button.

Orson toted all his lines over to the window to see outside with Dad and play with his glow stick from his grab bag. He picked Dad to stay the night with him so that they could have a "camp out" in the hospital and "talk all night."

When Orson found out that he wasn't allowed to eat dinner or even popsicles like he planned on, he got satisfaction out of feeding his Button Bear some food that he had packed unbeknownst to us.

Many of the things that he packed where things he asked for to eat at breakfast.

He was NOT happy that they had put his IV in the hand of the thumb he sucks, or as we all lovingly refer to it his "bugger hand" since he always sucks his thumb and picks his nose at the same time. He likes to have Frank hold his "bugger hand" when they walk together and then laugh and say "ha ha Dad you are holding my bugger hand."

He found a way to make it work but was not happy about the board they had taped to him. I have to give them lots of credit though because that thing got lots of abuse and held the line the whole time.

I got back to the room around 5:00am and had a box of donuts waiting in the car to bring up as soon as they said he could eat. We had been told that they would try to get a hold of the doctor or surgeon in the night sometime to clear him to eat breakfast. They when I asked at 5:00am they hadn't done that, but said that she usually makes rounds early between 6 and 7am. He woke up at 5:30am and was starving so again we used the grab bag as much as possible for distractions. These were really cute birthday animals that he got to build, but you can see how miserable he was in this picture waiting for the stinking go ahead to be able to eat.

That morning's shift change brought a no nonsense nurse to our room who proclaimed herself to "have no filter" and she was not afraid to track down the doctor and surgeon come hell or high water to get Orson some food. She was successful and he finally got to feast. When we showed him the menu of the hospital cafeteria there was a cartoon drawing of a little boy juggling pizza, hotdogs, and other cartoon food items. Orson pointed to the picture and said he'd have what that boy was having.

This same nurse acquired Orson his own wagon and got him permission to ride around and see some trains downstairs after he got food in his belly. She even let him unhook from his IV so we wouldn't have to drag around the pole. He took a popsicle for the ride as well.

This is our amazing no-nonsense-no-filter nurse letting Orson take off his IV and being so careful and kind to him. She made sure he remembered to remind her after his practice tube feeds were done to have her take him to the toy closet. After she left we teased him that maybe it was a broom closet and not a toy closet and she needed him to do a chore before he went home.

 We were wrong though, it was after all a toy closet and he picked a Mickey Mouse bowling set.

He got to ride out to the car in his wagon and the only super sad part about leaving was he didn't have an electric bed anymore. Before he left he jacked it up as high as he could though, for one last ride.