Christmas – Page 2 – Patrick Hoopes

Transplant Day 41 and Home Away from Home

Ok – lest there begin to be rioting in the streets, I am grabbing a moment with Patrick finally sleeping. I can’t get my laptop to work inside my room at the Ronald McDonald House and my brilliant husband isn’t here to fix it.. So the only way I can get both internet and a keyboard is to sit in the kitchen.

So – here I am. What can I tell you about the past few days?

Monday morning, Patrick was looking and feeling great. The labs confirmed that Patrick’s medication levels were in the safe range. That meant that it was ok for him to be discharged from the hospital. I’d forgotten what a big feat that is when you are setting up all new home care. All day long I cleaned and packed and then tried to throw in playing and resting time with Patrick. He was excited so he couldn’t fall asleep to nap, but as the day wore on that meant that he was more and more tired, and therefore more and more excited.

The insurance company seemed to throw a kink in things right at the end, saying that Patrick’s formula couldn’t be covered through the home health agency and needed to go through a pharmacy instead. I had some worried conversation and made several phone calls and then finally decided to call directly. It turned out to not be the a problem at all, just needed to be preauthorized. But it created a fair amount of worry for a few hours.

Otherwise, though, we just sat and twiddled our thumbs until late afternoon when the pharmacists and case managers and everyone started to finally come in. I ran to the pharmacy to pick up one last prescription. It sounded easy, but took several phone calls and two trips to the pharmacy to sort it out.

Thanks to that, we ended up not leaving until 6 p.m. By then, Patrick was beyond tired and I was frazzled. We arrived at the Ronald McDonald House right before dinner time. Patrick was really scared about moving out of the hospital. He kept asking me who the nurse was going to be and if we could go back.

We had a mountain of medical supplies arrive as we did that needed to be put away. It took all of Tuesday to get things out of boxes and into shelves and drawers and otherwise in a state where I could work with them. Especially because Patrick was following behind me trying to explore and help as i worked. The room looked like a tornado hit it. I had two huge piles of laundry. And medical supplies just overflowing.

The medications were especially intimidating to me, when it was time to start giving them I started to really wonder if I’d been paying good enough attention. But we made it through and Patrick slept for the entire night in his bed by himself. It was amazing.

The next morning, we woke early and hurried to get ready so we could get ready to meet the home nurse. We’ll be doing daily lab draws for a while to check his medication levels. They also required that someone come and watch me mix Patrick’s first batch of formula. I guess they have problems with someone mismeasuring.

However, it was nice to have the second set of eyes on the problem as it turned out that Patrick’s formula required 2 liters of water, plus nearly 3 cups of powdered formula and I ended up pouring from one pitcher to another to make the full batch.

After that, the priority of the day was moving day. We went grocery shopping and to get some things from Walmart (including a bigger pitcher). Patrick was so tired after just half an hour shopping that he was hugging me and begging me to go. But it was good to know that we had food choices in the house for him. With his allergies, he needs to have his own food.

We came back to the room and got Patrick as much of a nap as possible, but after about an hour my phone started to ring with different people checking in to see how Patrick’s first day was going. That woke him and then we were up and running again.

Patrick’s medical care is a pretty strict schedule right now.

At 7, I give him an anti-nausea medicine through his g-tube while he sleeps. We get up around 7:30 to get ready for the day. We cover his line and his ostomy to get him into the bath. Then get dressed and draw up the morning medicines. (At least the ones that are in the room.) I open 6-9 different pills and dump the powder out and mix it with water for one medication. Another 2 have to be kept in the fridge downstairs. Then I pack up the materials needed to draw labs off of Patrick’s line.

The nurse arrives at 8:30 and takes a set of vitals and draws labs. Then at 9 we give medications.

His formula has to be mixed once a day. I’m only supposed to put 4 hours’ worth in the bag at a time so we have to refill and reprogram regularly, including during the night (unless I can talk them into a bigger bag with ice with it with next month’s order.)

Dinner is at 6:30 and Patrick loves and can’t focus at all during dinner. He is all over the place when we are out in the house.

His prograf levels have been too high for the past couple of days. That means that he is struggling with insomnia. That is made worse by the fact that I can’t just lay down and sleep in his bed next to him if I’m going to be up doing medicines and refill feeds during the night.

Today, he was dead tired all day which made it really hard for him to focus on anything. We did get the laundry done. We tried to go play in the playroom, but timed it just as the volunteers who clean the toys arrived. So we went to our room and I decided to make him nap instead.

Today during nap, I figured out how to make the door stay quiet enough for me to sneak out and I was able to get out and eat lunch and move along laundry. And that made him rested enough to make it back to the hospital on time for a last-minute invite to go meet Santa.

Patrick was adorable with Santa. He thought he’d be there with his gift, but I explained we were meeting him to tell him what he wanted. So as soon as Santa came up, he told him his wishes.

Then, they gave him a gift. He tried to return it because it wasn’t what he was asking for.

It was hard to drag him away, but his teacher was coming for school today. That didn’t go great with him being tired.. But once we got past that, I was able to see a little more clearly how he was feeling. We finally ended up in the room letting him lay on the bed watching Blues Clues and that went a lot better.

And then tonight, we had a talk about the fact that I’d need to get out of his bed to take care of him but would be back. And, although it took an hour and a half to fall asleep, when he finally made it, he did so deeply and without tears.

And that’s how I’m here writing right now. I’m not doing a great job. I’m fairly distracted.. But at least you know a little bit how things are going. Patrick’s needing pretty constant supervision so even though it doesn’t seem I’m doing a lot as I describe my day, I’m working pretty constantly from the moment I woke up.

We’ll do better with time to establish a routine. And as they get Patrick’s prograf levels in range so he doesn’t feel so crazy. I just keep telling myself, a new normal takes at least a month.. and more if it’s a big new normal.

Meanwhile, it’s nice to be where there are other moms kind of watching out for us and people cooking for us every evening. Even if it is easy to get stuck talking when I should maybe be doing other things.

Please forgive me for no pictures. I’m realizing now I left my phone in my room and can’t add pictures from it on the laptop. Maybe i’ll add a blog post just for pictures.

For now, though, I’ve got to go get back to the room before Patrick misses me.

Transplant Day 34 and child life

It was so great to get Patrick to bed on time last night. He slept well and even slept in a bit. But we were up on time to catch one of his favorite volunteers first thing in the morning. I was glad she came because Patrick’s nurse was really busy and without Brian to provide backup, getting up and going was a bit of work.

IMG_20141202_100627 — A before picture from yesterday’s bathtime

And we needed to do it quickly. Once a month, some stylists come in and give haircuts to any kids who need them. Patrick’s last haircut was in September. He definitely needed one. They trimmed off an inch and a half at least all the way around. The pile of hair was huge.

IMG_20141203_101857 — During the haircut

He looks and feels a lot better.

Then we came back up to the room to wash off the hair clippings and the volunteer came back again. She did some of Patrick’s homework with him while I made his bed.

The team came for rounds. Patrick’s to do list before discharge is getting shorter and shorter. He looks and feels good. He is back to full feeds and off of TPN. But his rejection medication levels have been pretty unpredictable and they are trying to find the right balance of keeping the fluid out of his lungs while still keeping him hydrated. That and some training for me are about what’s left… assuming nothing else pops up, which certainly can happen.

Next, it was time for the hospital’s annual Christmas caroling. We went with the music therapist and pharmacy students and some other kids and families to sing to the other patients around us. It was fun to see it actually bringing smiles to people’s faces. Patrick didn’t much care for it, but enjoyed the wagon ride. And it meant he got to play with the Child Life specialists a little bit.

When we first arrived, we were the only family to show up. And there were news crews there to cover the event, so that meant they asked us for an interview. Mind you, I was unshowered, no makeup, wearing a bright purple t-shirt and a bright orange Santa hat Patrick had decorated for me. But hey, it’s a little way to give back. So we shared that side of me with Omaha to day.

Amazingly, I was able to get Patrick down for a nap on time. This was good as Wednesday is a school day. Thanks to a sweet hospital mom friend, I even had a yummy lunch to sneak in eating during this time. Patrick’s teacher comes a little after 2:30. He certainly could have used a longer nap. In fact, he cried big fat tears when I woke him. But once his teacher was here, he was happy to play and learn with him. And it gave me a good excuse to clean up the room so that the little table in his room was ready as a place for them to work.

We wrapped up our day with some time doing puzzles in the playroom, making our daily Christmas ornament, and video chatting with some friends back home. He’s still clumsy and weak, but didn’t need pain medicine all day. He is walking mostly on his own and since it’s been over 4 weeks, is even ok with getting up and down by himself.

When it was time to eat, Patrick told me what to make for dinner and asked to have some. That’s the first time he’s chosen to put food in his mouth in a couple of weeks, so I was thrilled.

And now, if we’re going to stick to a regular schedule, it’s time for me to get him to bed. Especially since I need to make a trip back to the Ronald McDonald House first thing in the morning.

Gotta say, though that our first day alone didn’t go off too badly. Of course, child life had activities planned for us or sent volunteers for most of the day. But I’ve learned that even when we are outpatient, we are invited to come over for all of these events. So movie night and craft times and all of the fun stuff is still available to help us pass the time.

Transplant Day 32 and slow and steady

Well, today I have very little to report. It was a very quiet day. Patrick’s pain is a little better, and so his breathing is, too. He only needed oxygen for a little while after we got him really mad getting up in the morning. His nurse wanted to take the cannula (tube) off his nose tonight, but we told him to wait till after bath in the morning.

The doctors restarted feeds and started to decrease the TPN again. So far, so good. We’ll see what the chest x-ray shows in the morning. So far, though, things are moving in the right direction.

We know he’s still hurting some. It’s hard to find the balance, though, to know how much he needs medicine. He does NOT want to walk. I was trying to get him to walk around the room earlier today and he decided to just stand on one foot so I couldn’t make him take the next stop. Not sure if that’s because of pain or because of a fear of coughing or just fear in general. Brian pushed and pushed to get him up and once he forgot to be miserable, Patrick actually walked quite well to the nurse’s station. But then he tried to refuse to come back. This is one area where Daddy will be sorely missed when he goes home.

Patrick got to play with a couple of his favorite volunteers. His homebound teacher came for his “first day” of homeschool. Patrick was overtired by then because his sleep schedule is all off right now, but it went ok.

Meanwhile, I started working on trying to figure out how to do Christmas here. It feels like all of our Christmas traditions are packed away or will go on without us in Utah. We don’t really have space or time for too much here. I hesitate to decorate because I don’t know where Patrick will spend his time. But I didn’t want to do nothing all month. So today, I put together a makeshift, simplified Truth in the Tinsel countdown to Christmas. The idea is to introduce the Christmas story with a topic a day. Each day has a word, a scripture, and a craft to make an ornament. Eventually, you end up with 24 homemade ornaments. I thought this might be a fun way to work towards decorating our own little miniature Christmas tree.

Today’s word was light. We read Isaiah’s prophesy of Christ’s birth and talked about how Christ is the light of the world. Then we made a candle ornament.

It was kind of nice to have time for a little project today, even if it was accomplished because I planned it while volunteers were playing with Patrick and shopped while he and his dad were napping.

Tonight, I’m spending the night at the Ronald McDonald House. Brian wanted me to have a night away before he flies home tomorrow. Plus, it means a little extra time for the two of them together. Tomorrow, things are going to be different for all of us.

Transplant Day 31 and a Day of Rest

It seems like Patrick turned a corner last night. I wish I could say things are all better. Today, for him, things are still hard. His fevers are gone. He hurts and hurting is making him not want to take deep breaths. Because of that, even though his lungs seem a bit healthier, he’s still requiring oxygen support when he’s awake. (Not always while he’s asleep, which confirms the idea that he’s in pain.)

Therefore, we have seized upon this Sunday as a day of rest.

Of course, it didn’t start out in a very restful note. The fire alarm went off here in the hospital this morning at 5. I wish I could say that’s a small thing, but it’s not. Strobe lights flash in all the halls. They shut all the doors. And this recorded voice repeats, “There is an emergency in the hospital” over and over again. I wish I could say this is a rare thing, but it does go off somewhat regularly. The difference today is that it didn’t stop. After about an hour, they did finally figure out how to shut the voice off. “Mostly.” But at 7 the strobes were still flashing and the doors were still closed and because that somehow affects the security doors in the pediatric units, security was there.

This was enough to get Patrick good and awake for a little bit last night. Not the end of the world.. right before the alarm he was awake needing pain medication anyway. I was really grateful for his nurse last night who, instead of offering sympathetic words, got silly and made Patrick laugh with silly antics and a pillow fight at 5:30 a.m. I learned a lot from that as I saw how much better Patrick felt laughing.

Once Patrick was feeling a bit better, I decided not to force the idea of sleep. I turned on a Blues Clues and told him I was still tired but he could watch or sleep so long as he was quiet. (Last night, because he was hurting, Patrick opted to sleep in his bed alone with me asleep in the recliner, which almost stays reclined, next to him holding his hand.) I went back to sleep and so did he.

Then, about 7 a.m. Brian appeared cuz I guess he’d been awake, too. We did an early morning shift change and I headed off to get ready for church. Since Brian flies home in a few days and it will be a while before I have the chance to attend in person again, we decided that today was a good day for it.

I had the chance to visit with some of the Ronald McDonald House staff while I was waiting for it to be time to go. One of them had been to the temple open house when they built the temple here and we had a good talk about temples and why they are important to us.

I only stayed for sacrament meeting. It was good to be able to sing hymns with a congregation. I met the bishop and the newly called compassionate service leader who went through her own big, long, scary illness and hospitalization a year ago and knew all the right questions to ask.

Then I came back to the hospital where I found that Brian had been trying to help Patrick get up and move around the room, but it hadn’t been going easy. Patrick hurt and getting up just made him need more oxygen. I found him sitting in the recliner and we played playdough together for a little bit.

Then, the men from the ward (congregation) came with the sacrament for Brian and Patrick. Today a 12-year-old deacon came along and Patrick was excited to make him play playdough, too.

After they left, Patrick was looking beyond tired.. so we decided it was time for a nap. Patrick tried to avoid it. First, he stood an extra long time leaning against my shoulder. We discovered that daddy blowing zerbets on his back made Patrick’s heart rate go down and his oxygenation go up. Then, he opted to walk to the mailbox on the playroom. But once we got there without oxygen on, he was tired and I carried him back and put him to bed.

He slept 4 hours. He is only awake now because he needed his diaper changed. But his monitors reveal that the sleep has helped him to feel better.

So it’s been a very quiet Sunday, and a much needed chance to rest. I keep reminding myself that, though much smaller than transplant, yesterday’s procedure was a surgery and it will take a few days for the pain to go away again.

People often comment or ask how it is that we stay hopeful and positive during these hard times. Patrick’s attitude helps a lot. So does the support of the staff here and all of our friends and family.

Today at church one of the hymns reminded me of another way, too, that we are getting through this. Here are the words I sang today that brought a tear to my eye and some comfort to my heart.

I believe in Christ; he stands supreme!

From him I’ll gain my fondest dream;

And while I strive through grief and pain,

His voice is heard: “Ye shall obtain.”

I believe in Christ; so come what may,

With him I’ll stand in that great day

When on this earth he comes again

To rule among the sons of men.

I’ve spent the evening trying to find a good Christmas Advent for Patrick. In years past, I’ve done an activity a day calendar with baking and outings. But many of my activities don’t fit right now and I don’t feel we can plan ahead enough. So I’m looking instead at a symbol of Christ/craft a day idea like The Truth in the Tinsel. Just gotta figure out if I have the resources to pull it off here.

Because today I was reminded that it is Christ’s atonement that carries us through this. He took upon Him all our pains, both physical and emotional.. not just the pain of sin, but our grief and other sorrows, too. His resurrection means Patrick will one day have a perfect body, free of all this illness and pain. Better than a transplant. Much better. He is the Prince of Peace.

Christmas cards

On Christmas Eve, Patrick received a very big envelope with his name on in in big, bold marker.

Inside were handmade Christmas cards from the Pleasant Grove LDS Seminary. The letter said they were intended to bring a smile to Patrick and his family this Christmas.

Reading them together, definitely brought a smile. Here are just a few favorites. Some were artistic. Others used words.

One wrote “For Christmas I just want [you] to know I’ll give you my hope and prayers”.

Another: “I know you can’t read this (unless you’re really smart), but I thought your parents could read it to you. I just wanted to let you know that someone was thinking of you.”

And another: “Once upon a time there was a knight named PATRICK. He was the coolest, strongest and bravest knight in all the land. One day and Evin Night Dragon came to destroy the land. Patrick battled the dragon for a long time. He finally defeated the dragon. Everyone loved Patrick. He was a hero.”

The cards definitely brought smiles to all of us. Even Patrick, who loved the pictures, especially the card with the Mater stickers. He’d have eaten them all, had we let them.

Christmas in Patrick’s House

Well, despite the fact that Patrick spent most of the week before doing forbidden things and saying “naughty, naughty, naughty,” Santa still came to Patrick’s house.

I was very excited to share Christmas with a little boy finally old enough to understand. In fact, I was wide awake at 5 a.m. after having a horrible dream about needing to collect a sample to test for C-Diff… and could barely get back to sleep because I knew it was Christmas!

Patrick, on the other hand, slept until 9. Brian and I actually got up and started making breakfast before the little munchkin dragged himself out of bed. Who was I to argue with him sleeping in on a day when naps would be near impossible?

He loved opening presents, though wasn’t so keen on the fact that mom and dad kept taking the new toy away to give him another present to open.

Still, it was quite the Christmas complete with lots of Elmo, cars, new clothes, books, and a stocking with goodies of bottled water and puffs.

Then, we finished breakfast. I found that I could make decent eggless milkless pancakes from a mix, so we made some silver dollar sized pancakes for Patrick and some big, fluffy, pecan laden pancakes for mom and dad.

We ate and then, still in PJ’s went to take presents grandma and grandpa. The rest of the day we visited family. We had a big family get-together with my family at my grandpa’s house. The place was so packed with cousins and gifts that you could barely walk!

We spent the evening with Brian’s family. His brothers drove in from out of state and for the first time in years, the whole family was together on Christmas day.

At last, exhausted, we headed home to bed. Christmas was everything I could have dreamed!

As I reflect back on this Christmas season, I realize just how blessed we have been this year. In the midst of all the hustle and bustle, the presents and family and good food… I’ve had a few little moments where I realize that we have been given the greatest possible gift this year. Our little boy was able to share in all of the Christmas magic with us.

This year, Brian’s company party took us to the theater for a production of A Christmas Carol. You know, I think I’ve seen or read that story at least a hundred time in many, many formats. I’ll admit, the character Tiny Tim has always seemed a bit romanticized to me.. how could a little boy really make THAT big of a difference?

This year, it took a conscious effort to hold back the tears. Having Patrick in my life has taught me just how a very special child can really touch hearts and lives. I understand why Bob Cratchit would stay working for that awful Scrooge. And what’s more, I understand why Christmas in their house was so very special.

Dickens described Christmas in the Cratchit household with these words:

“There was nothing of high mark in this. They were not a handsome family; they were not well dressed; their shoes were far from being water-proof; their clothes were scanty; . . . But, they were happy, grateful, pleased with one another, and contented with the time; and when they faded, and looked happier yet in the bright sprinklings of the Spirit’s torch at parting, Scrooge had his eye upon them, and especially on Tiny Tim, until the last.”

Happy, grateful, please with one another, and contented with the time. That is how I’d describe our Christmas this year. With our own Tiny Tim, each seems a little more precious.

Yes. We had a very merry Christmas in our house.

Holiday fun

We’ve been doing our best to make the most of the holiday season. How fun it is to have a 2-year-old this year! Christmas is so magical for a child that age… and it’s the littest things that make the most difference. For example, Patrick’s been glued to the Christmas lights we hung on our house since the night we put them up. Now, given, we have some very cool lights this year – LED color changing icicles… He watches them and smiles whenever he sees them.

He loves the tree, too.. especially the ornaments.. and I’m finding that my investment in Ikea’s unbreakable ornaments has been a blessing because then he can take them off and carry them around without worrying me, and then we put new hooks on and hang them back up. (One disclaimer – they do break if you push a full toybox into them repeatedly.)

Of course, we took him to the Festival of Trees again this year. Last year, this really was a test of his patience. But this year, he loved the trees – especially the tree covered in Elmo dolls, and any tree with cars or trains under it. He wasn’t so happy that we made him stay in his stroller so we couldn’t play with the toys in the displays and did his best to sweet talk someone else into taking him out.

We did our best to see Santa there, too… but we arrived as Santa went on break and by the time he’d made it through the crowd (giving hugs and candy canes along the way) we’d run out of time.

After weeks of snow, we had some unseasonably nice weather last week. Monday night I realized that it was probably the warmest evening we’d get all year. So, I called Brian at work and we decided to seize the opportunity to see some Christmas lights.

I made some taco soup and we picnicked in Daddy’s cubicle. For the record, soup is Patrick’s current favorite food. We stick to clear, mild broths. I’m not sure it’s the best thing for his tummy, but it he loves it and there are worse things for him, and so I let him have it from time to time. He makes a little sipping sound to ask for it and will eat until there isn’t a drop left.

After eating, we bundled up. I made a little tube warmer for Patrick because if the fluid in the IV’s gets cold on the way into his body, Patrick gets chilled really quickly. It takes about 5 minutes to do the 10 feet of velcro, but it seems to work. Then we added coat and hat and gloves. Patrick was more than happy to stay bundled and warm.

We’ve got a zoo pass, so Patrick is familiar with the zoo… but looked a bit confused when we arrived there after dark.

And then, when we walked in and saw the lights, his eyes got big and he grinned from ear to ear!

Posing with some of the lights (the little grey thing by his back is end of the tube warmer)

They had a really impressive display. Lots of lights everywhere, including full habitat scenes. And, where possible, we were able to walk in and see some real animals… mostly fast asleep. The leopard was sleeping sprawled in plain sight, but woke up to give us all a nasty look for interrupting his rest. And did you know that monkeys sleep all in a pile in the top of a tree?

Afterwards, we stopped in the gift shop to pick and ornament for our tree and let Patrick pick out a stuffed animal, too, that he’ll get on Christmas.

The next night, we finally got to see Santa. HopeKids had a big Christmas party for the kids. So big, in fact, that it took 3 sessions to accomodate everyone and there was still a huge crowd.

If I haven’t explained it before, HopeKids is an organization that plans free activities for kids with terminal illnesses. The idea is that if you have something to look forward to, then you have something to hope for and something to live for.

Well, we can’t really explain plans to Patrick. However, he’s beginning to understand one thing… the HopeKids shirt means fun is coming. I went to get him ready to go and pulled out two choices – a Christmas shirt because I knew photos would be taken… or the HopeKids shirt. Patrick caught one glimpse of the shirt and started to beg to wear it. When I tried just putting the Christmas shirt on him, he melted into tears.

This is what happens when mom says "No, stay there a little bit longer" — This is what happens when mom says “No, stay there a little bit longer”

Finally, I conceded and let him wear both. Which made him happy enough until that night when it was time for PJ’s and he fell apart again because I made him take it off… he carried it with him the rest of the night.

Why so much fuss about a shirt? Because Patrick knows that if we get out our HopeKids shirts… especially if we all wear them… that something really fun is about to happen.

This time, it came in the form of the biggest and most kid centered Christmas party I’ve ever seen. There were photographers, of course… and Christmas presents. (They let the kids pick their own… Patrick picked a fire truck). There was a magician and a juggler and pizza and so very, very many crafts.

Patrick looks pretty unhappy to see Santa in the picture we took. I think that’s cuz we put him on Santa’s lap and then made him stay there while we took pictures. As the night wore on, Santa came back a few times and each time, Patrick was less nervous. By the end, Santa could come get a high 5 or a pound on the fist and even a little grin.

Amazingly, Patrick even enjoyed the show. Usually he’s pretty unhappy when crowds laugh or applaud, but this time, he clapped and pretended to laugh right with everyone else, though I’m not sure that he really could see what we were all laughing at.

There’s still more Christmas fun to be had. We are almost caught up with shopping and half done wrapping presents. We’ve baked our goodies and visited the neighbors. Tomorrow is Patrick’s last appointment for the rest of the month… We had a busy couple of weeks trying to fit everyone in before offices closed for the holidays. But I’m hoping now it will be worth it as we have nothing left to do but play and enjoy the family and the holiday.

A belated Christmas entry – including video

http://www.facebook.com/v/1248583248706

Well, it’s rather late, but I had to post a bit about Patrick’s Christmas.

This is the first Christmas season we’ve had to spend at home. Patrick came home last year on December 9th, so he was home for Christmas – but he was too young and we were too overwhelmed to count it as much.

This year, Patrick totally got that something was going on with Christmas! The tree intrigued him, though he didn’t start to undecorate it until after the holiday. He did love everything to do with presents and wrapping paper, though. In fact, the rolls of wrapping paper were motivation for him to finally really learn to roll over. He mastered tearing paper just on time to open a few presents with coaxing, as the video shows.

Christmas Eve we had a late breakfast with my brothers and sisters. Patrick wanted to explore, but his tubes kept getting in the way, so he stayed sitting with grandma, aunts and uncles most of the time.

We spent Christmas morning at home. Patrick was a bit overwhelmed by all the new toys, but happy nonetheless. Then we went and visited with each of our families. He was a bit tired by the end of the day, but did just eat up the time with people he loves.

Festival of Trees

The Festival of Trees is a big Christmas tradition here in Utah. Groups and individuals decorate and donate trees, wreaths, crafts and more. They’re displayed to the public for a week, and available for sale. All proceeds from sales, admissions, and goodies sold are donated back to Primary Children’s Hospital to help families in need.

We took Patrick to the Festival tonight. He wasn’t so sure about the crowds and was only vaguely interested in the trees. He did really like the chains used to protect the trees and the excuse to ride with Daddy and pull Mommy’s hair. At the end of the evening, we took him to meet Santa, which was a pretty good 1st Santa experience. Patrick loved his beard and sleigh bells.

This year’s Festival was a bit bittersweet for Brian and myself. There were a couple of trees there honoring friends’ children who passed on this year. Those brought tears to our eyes. It meant all the more to know first-hand the tender moments that happen in a children’s hospital. Just one way that Patrick has changed our lives and hearts for the better.

Patrick’s First Christmas

Although this picture may not reveal it, Patrick had a very nice first Christmas. It almost came and went, we’ve been so busy. It was a definite feat to get Christmas letters out (sorry to those of you who are still waiting), goodies made (again, sorry if you haven’t gotten yours yet), the tree up (only took a week of intermittent effort) and presents bought and wrapped.

But the most important elements of Christmas were still there. Brian and I had our traditional Christmas Eve dinner and Patrick played in his bouncy seat nearby and enjoyed his feast of 14 mL’s of formula. We opened our Christmas Eve pajamas (another family tradition), and Patrick loved his so much that he slept his best night yet in his. We decided it was probably the last year we could get away with sneakily opening our other presents on Christmas Eve (this is a remnant of being the kidless ones who travel around to family on Christmas Day)… so we opened all our presents before going to bed. All in all, considering everything that’s happened in the past month, it was still a very nice Christmas. I can’t wait to find he time to dig into the books that Howie bought me.

Patrick’s had presents rolling in all week, so we only wrapped him one for Christmas… a gloworm that he loved so much when we found it in the store that we had to buy it. But he was definitely spoiled by friends and family… and we were able to finally just about finish getting his nursery furniture, appliances (yes, he has his own fridge), and decorations together.

We spent the afternoon and evening… and actually all weekend… visiting with family. Everyone loves holding Patrick so much that I have a hard time keeping track of it so that it’s fair for everyone. It was fun to be able to share him with grandparents, aunts, uncles, and cousins.

We’re hoping for one more miracle this Christmas and will post details about it as soon as we know if our wish comes true.