Holidays – Page 3 – Patrick Hoopes

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.

Transplant Day 28 and Thanksgiving

I didn’t get to blogging last night. Patrick has had some really good moments, some really difficult moments, and a very busy treatment schedule for the past 2 days. This is the first quiet moment I’ve had. So let me catch you up.

Two nights ago, I emptied Patrick’s ostomy bag and put him to bed. (In case you don’t know, an ostomy or stoma is a place where a surgeon has made a small piece of intestine come out of the skin. It drains into a bag. Patrick needs to have one so they can easily and safely do scopes to watch for rejection for the next year. Eventually, they’ll take it back down and reconnect him.)

Anyway.. I put Patrick to bed a little before midnight. By morning, his ostomy bag was still empty. When his nurse gave him his morning meds, he couldn’t keep them down. And as the day wore on, it seemed his discomfort was growing more and more. But we told the team and the surgeon said get him up and maybe it will wake up. If not, then call and a resident could come use a small tube to help break up and drain out any small blockage.

Well, 2 p.m. rolled around and still nothing and Patrick’s belly really hurt. We called the resident. She was really hesitant and thought that it was dangerous to put a tube into Patrick’s stoma and new bowel. So she wasn’t going to do it without permission. The fellow (who is over the residents) had been in the hall pulling up chest x-rays during the conversation, so he hadn’t heard the instructions. It took another hour and a little bit of firm insistence before she finally consented to come do the procedure.

But, once she did. Patrick felt lots better. The nursing staff decided that they would insist that this be done once every 8 hours at least. Because of that, Patrick was much more comfortable for the rest of the afternoon.

All that pain made it so Patrick didn’t feel much like getting up and moving much. Thank goodness for family, though. When Brian’s brother Mark heard that we were going to be here for Thanksgiving, he and his wife immediately started to make plans to come celebrate Thanksgiving with us. They rented a house for the weekend so they’d have a kitchen to cook in. They drove here from Denver, arriving Wednesday night. Then, the night before Thanksgiving, they went and found a grocery store, bought all the food for the meal, and went to work.

So yesterday morning, while Heidi stayed behind and cooked, Mark and his kids came to play. They threw a ball, blew bubbles, put on a mini puppet show. They brought Patrick big smiles, even though he didn’t feel very well. Then, they went to help pack up the food and Patrick took a nap. He slept through dinner, and that was really ok, since he wouldn’t have been eating anyway.

For a Thanksgiving dinner in the hospital, this meal was amazing. As I’ve said before, this hospital is abandoned on weekends and holidays. So we set up dinner on one of the long tables in the cafeteria. We all ate until we were well stuffed. The kids played in the cafeteria and we rested and talked.

Then I came upstairs so Patrick wouldn’t wake up alone. Good thing, too, as he woke up crying in pain. His nurse got him a hot pack and some pain meds, though, and with his belly a little less full it helped.

Brian came up after his family had left for the evening and with pain medicine on board, Patrick was ready for a walk. We got the nurse to bring in a cart for some portable oxygen. His walking was stiff and clumsy and guarded… But getting up and moving seemed to have helped his lungs. His oxygen saturation was much better for the rest of the evening. That, after a day of restarting respiratory therapy, seemed to make a really big difference.

It was a busy evening, though. Nursing staff is short on a holiday so the nurses were running like crazy. But still, with several antibiotics on the IV pump in the evening, the pumps just beeped and beeped. Finally, we made it to sleep at midnight. Unfortunately, vitals woke up at 5 and then labs at 5:30 and so we were both exhausted by morning. Therefore, this late post. I’ll start writing about today next and hopefully post after adding a bit more right at bedtime.

Transplant Day 27 and Baby Steps

Well, since I blogged this morning, I don’t have a lot of updates. Patrick’s made steady progress all day. He still needs some oxygen support, but not as much. He slept till noon. He played in his wagon.

It was a good mail day. We got cards from Patrick’s kindergarten, a picture of the Salt Lake Temple from a friend, and a package from Patrick’s therapist and social skills group. Those things came on just on time to lift our spirits. Patrick was confused and sad to wake up in the ICU when he’d expected to go back to his room last night. Brian and I were just tired.

In addition to that, Brian went to Village Inn to pick up a couple of pies I ordered yesterday for Thanksgiving dinner. When I placed the order, they noticed my out of state phone number and asked what brought us to town. Well, when Brian got there to pick up the pies, she came out and explained that she had bought our pies for us. Just the kind of gesture to make the morning after a bad night better.

Patrick had a CT scan this afternoon to look at the current state of his lungs. That scared him and brought some tears… but they let Brian and me hold his hands and we even got some smiles during the test.

It’s been great to see his smiles. I hadn’t noticed how much they had been missing till I saw them come back. He is sore and afraid of being more sore so he hasn’t wanted to walk much. His neck is kinked and he doesn’t want to turn his head. But overall, he’s still feeling and moving better.

After it hurting to talk yesterday, Patrick has stayed with his default method of communication from yesterday. He is waiting for yes/no questions and then answering with sign language. This is better than not talking at all… but I hope his words come back soon.

We were transferred back to the pediatric floor today to a room that is a touch smaller but otherwise a mirror image of our previous room. Since his lungs are still kind of at risk, we are packing smarter this week… keeping things a little more put away and hanging fewer decorations on the walls. But it is nice to have more space and more quiet at least.

Brian’s brother and his family arrived tonight. They are making Thanksgiving dinner tomorrow. It was really fun to see them. Patrick was so content that he fell asleep in his wagon holding Mark’s hand. I don’t quite have the heart to move him back to bed yet.

Patrick’s Getting a Transplant – Day 1 (and a half)

Last night, as Brian and I were turning off the lights to go to sleep, my cell phone rang in my hand. I looked at the caller ID and my heart skipped a beat. It was the transplant team. It was 10:30 p.m. It took me 2 rings to get the courage to answer.

Patrick’s transplant coordinator asked how his health had been, and then she told me that she was calling because they had received an offer for donor organs for Patrick.

I thought I’d be excited when this call came. I was not. I wanted to shout “NO” and hang up the phone. Patrick has been having a very good year. His health has been good. He is loving kindergarten and for the first time has had friends his age. I’d just helped to a Halloween party in his class. It was a hit and he’d had a great time. We’ve gotten in to one of the best mental health programs in the state and were making good progress with his attention and behavior. We’d been trying a medication for his ADHD and it was a hard adjustment, but it seemed to be helping. He’s been learning to read. And I just planned his birthday cake and finished wrapping his presents.

Did I want to change any of that!? NO!

But at the same time, we know a very hard truth. Patrick has been defying odds as he lives with a terminal illness. There is a reason they let us do a wish trip. Patrick is running out of access. His intestines have been redilating and sooner or later would need surgery again. Patrick has been living on borrowed time.

We have said for 5 years that transplant would come at the right time for Patrick. Why that time happened to be during one of the happiest seasons of his life, I don’t know. BUT it did. And we couldn’t pass up the opportunity. Who knows when it would come again.

Getting ready to go was a chaotic mess. We had bags packed for us, but needed to pack Patrick’s things. We needed to call insurance and the doctors and somehow get to Primary Children’s, then to Life Flight and then to the Nebraska Medical Center. We needed to gather family to say goodbye and get blessings. And we were supposed to do it in 6 hours.

We didn’t do it in 6 hours. I was too confused. The hospital and Life Flight couldn’t agree.. And it took extra time. And it was ok.

Patrick's doctor- with us since we got to Utah, almost as much family as physician — Patrick’s doctor- with us since we got to Utah, almost as much family as physician

We got to the hospital a little after midnight. There, we were met by Patrick’s amazing GI who had come in and stayed up just for us. He wrote orders and then saw us off.

We got to the airport and were met by two amazing nurses and a pilot. Patrick had to ride lying on a gurney, but they managed to make it fun enough that, even though we’d woken him 2 hours after he went to bed (on a day he hadn’t napped), he laughed and played and was ok.

We arrive at the hospital around 6 a.m. and were shown into the PICU. There was some bustle of admission, but things were pretty quiet. Before long, Patrick had snuggled up and fallen asleep. And so did I.

Eventually, they came for some labs. We let him open his birthday present. Then, Child Life came by and asked if he needed a Halloween costume. As I’d left his awesome purple minion costume at home, we borrowed a Buzz Lightyear. It barely fit, but he was happy. And it came just on time, as the Nurse Practioner told us just then to let him up to move around. We made it out just on time to go trick or treating. Each department of the hospital put together mostly non-food goodies. Patrick happily went to each of them saying “Happy Halloween” and being showered with gifts. He came away with quite the haul. We even made the news.

http://launch.newsinc.com/share.html?trackingGroup=69017&siteSection=ndn&videoId=28082677

Trick or treating in a borrowed costume (with accessories)

About 2/3 around the room of trick or treats, we got a call that they wanted Patrick back in the room for a procedure. We made a hurried run back to the room where they explained that they wanted him to go to interventional radiology to try to place another line. That sounded like a request to do the impossible. It turns out it was hard, but possible. Patrick currently has 6 lumens.

Going down early for this meant that Patrick would need to be intubated and sedated earlier than we expected. It wasn’t worth the risk to wake him up again. So I used the little time that we had before sending him down to try to explain to him what would happen. I could tell he didn’t get it. I could tell he was scared.

But it was time to go. So we did all we could to tell him we loved him and help him feel brave, and then we walked him to the procedure room and kissed him goodbye.

He spent the afternoon intubated and asleep. He woke a little once and made a furious fight to take the breathing tube out of his throat. It took several people to keep him safe until they were able to get some more meds to settle him down. Hard, hard moment.

But the rest of the day was peaceful. With him asleep, they were able to get the other catheters and lines in that they will need to be able to monitor and take care of him during and after the surgery.

Finally, around 6 p.m. they came to take him to the O.R. We sat a bit on pins and needles till them, because until the organs arrived here and were inspected, there is always the chance of the transplant not going through.

It’s 9 p.m. now. The last update said that they were finishing putting in the liver and were just about to start putting in the other organs.

It has been a very emotional day. We have shed tears of fear and of hope and of grief and of joy. We have celebrated a birthday and Halloween and then said goodbye to our son for an indefinite amount of time. We have doubted ourselves, and we’ve been given flashes of reminders of faith. We have been touched again and again by the encouraging words of our family and friends and even of strangers.

Once again, we find our lives entirely overturned. I honestly don’t know how we are going to do this. But I am trusting it is going to be ok.

I’d like your help with something, if you don’t mind. Patrick’s birthday celebration got cut short when they took him early to place that line. I’d love for him to wake up to a room full of birthday wishes. Would you consider mailing a birthday card or sending an e-card? Mail to:

Patrick Hoopes
Patient Mail
Room # 5349
P.O. Box 6159
Omaha, NE 68106-0159

or you can send an e-card that will be printed and delivered to him http://www.nebraskamed.com/patients/well-wishers

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.

The big slide

I went online to look for pictures from the most recent HopeKids party and found these from the HopeKids birthday party that we attended in November. I just had to share.

This year, the party was at Classic Fun Center in Sandy. This place has two skating rinks, an arcade, ball pits, and best of all, inflatables. I wasn’t sure that Patrick was big enough for inflatables, and was sure his tubes would get in the way. Daddy saw otherwise.

Howie knows Patrick loves slides and so he found one he could carry Patrick up to slide down.

He’d tuck Patrick under his arm, and up they’d go. Up about 15-20 feet… and at least that many little foam steps.

They’d stop at the top to get backpack and tubes situated. This only helped build the anticipation.

And then down they’d come.

Both of them thought this was pretty darn fun.

And so, they’d go again.

They did it again and again until Daddy was so tired from carrying Patrick and his equivalent weight backpack back up the slide that he couldn’t do it anymore. So they sat and had a rest.

We played in one of the calmer inflatables for a bit. Patrick was really scared and frustrated trying to walk until Daddy started bouncing so we’d bounce. That’s how we finally got this smile.

And then, well rested, they went down the slide again. Is it any wonder why Patrick loves his Daddy?

(p.s. THANK YOU HopeKids for a very fun birthday party.)

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.