Tag Archives: birthdays

6 months

It is amazing to me to consider how far Patrick has come in the past 6 months. How much our lives have been changed in the last 6 months.

We decided to celebrate Patrick’s transplantiversary and half-birthday in grand fashion. After all, a transplant is an awesome birthday gift but a really sucky birthday party. Patrick deserved a party.

Right before transplant, Brian won a weekend getaway at a work party. So we finally redeemed that trip this weekend. Brian took Thursday and Friday off of work and we drove up to Bear Lake. Patrick was excited about the trip but very confused that our vacation didn’t include a plane. Let’s face it, we often fly off somewhere and THEN drive 3 hours or more once we get there. So a 3 hour drive, while that was a pretty big trip for me at his age, was a pretty small thing for him.

I still can’t get used to packing without TPN. I was able to pack all we needed with each of us only needing a small carry-on bag. I did, however, have two big bags of food that I took with us. Because Patrick is a hungry little monster and having food always available is kind of important. We knew that it was off-season in Bear Lake and we weren’t sure what food options we’d find for him. And besides, it was fun to have lots of snacks.

Patrick doesn't believe in sleeping in the car. But sometimes, he just can't help himself.

Patrick doesn’t believe in sleeping in the car. But sometimes, he just can’t help himself.

The trip was a much-needed dose of rest and family fun. We drove up Thursday afternoon and arrived in the early evening. They were still working on cleaning our room when we got there, so we opted to go for a drive. We ended up in Montpelier, ID for dinner at a little pizza joint. They were kind enough to make Patrick a little cheeseless personal pizza.

I love seeing finished plates that look almost like what other kids leave behind.

I love seeing finished plates that look almost like what other kids leave behind.

It always takes time to get Patrick settled in a new place. Hotel rooms are especially problematic. But we did succeed in finally getting him settled down. We stayed in the family suite so we could have a bathtub and a fridge. That meant, however, that instead of a bunkbed, Patrick had a fold-out couch. Have I mentioned Patrick won’t fall asleep away from home without me? Yeah, my back was pretty sore come morning. Getting too old for fold-out couches.

The next morning, Brian had planned a big surprise for Patrick. After a pancake breakfast, we went to a vacation rental shop and picked up a 4-seater ATV. Patrick has been jokingly asking me if we could drive our car up the side of a mountain for a while now. I think he was surprised to find out that it was actually possible. My thrill-seeking, rough-and-tumble, car-loving boy could barely wipe the smile off his face. He laughed his head off through all of the roughest parts of the path. Finally, we ended up off-roading in some snow and decided we were all tired. So we headed back down, stopped in a meadow for a snack, and then Patrick voted it was time to be done with the mountain.

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We ended up stopping and letting him just play with the vehicle for a while before returning it. And then, because we had time and because the vehicle was muddy, ended up driving it over to a car wash.

Patrick is a big Bob the Builder fan right now. So he was really excited to find himself up in rural country where there were also lots of construction vehicles. We had a great time spotting the real versions of diggers and cranes and dump trucks.

He was a little less enthused about visiting the lake. I didn’t think to bring him a camera along. (I need to remember he wants to be a photographer). And he wanted his dad’s. Eventually, though, we showed him the fun of throwing rocks in the lake and then he was sold.

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Inbetween outings, we hung out in our hotel room. Amazingly, after the first night, Patrick settled down and was happy to be there so we got the chance to watch a movie together while he played. We also explored a couple of local cafes and I was really proud of Patrick for trying food everywhere we ate. I was also very impressed that they restaurants were all so willing to help us invent Patrick-friendly foods from the items on their menus.

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And then, Saturday morning, when Patrick got up he told me that he loved our hotel and didn’t want to go home.

But we had to go home anyway. And, as with any vacation, once we made it home we were all just happy to be here.

Saturday evening, we let Patrick pick his birthday dinner. He threw me a loop by asking for chicken soup and grilled cheese. (With an egg allergy, we can’t just open a can for this.) Thank goodness Daddy was up for the job.

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And after dinner, we had birthday cupcakes. We sang Patrick happy unbirthday and he blew out his candle before I could explain making a wish.

Enough wishes have been granted this year for our family anyway. 6 years. And 6 months.

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2 years old

It’s amazing to think that my baby is 2 years old! He has grown so much in this past year! And it is such a miracle to still have him here with us.

We had a great time celebrating his birthday. Since it fell on a Sunday, we spent the morning at church. We dressed him up in a new little sport coat. They sang to him in his Primary class and he got to go get a treat from the bishop.

After church and naps, it was time to get ready for the party. Since Sunday dinner is a tradition for both sides of the family, we decided to invite all of them to dinner together.  I worked all the week before shopping and preparing food… ironic for a child who doesn’t eat. We did our best to pick foods he could share, though… and that wouldn’t take the party too long to eat so Patrick wouldn’t have to wait for them.

Patrick’s birthday dinner was simple, but his favorites. We bought him a personal sized bag of Baked Lays potato chips and a little cup with a bendy straw that we filled with water. Patrick LOVES eating chips out of the bag, so having his own was the perfect birthday treat and he had fun getting them EVERYWHERE around him.

After dinner, we gathered to sing Happy Birthday and blow out candles. Because Patrick can’t have milk, eggs, or sugar, I decided to make a non-food cake this year. I painted a round box and decorated it like a cake with cars everywhere, one of Patrick’s favorite things right now.

The street signs all had birthday messages on them. After blowing out the candle, we opened the cake instead of cutting it. It was filled with toy cars for all the kids to share.

Then we opened presents. Patrick made off like a bandit with about 20 small toy cars and a few big ones, shape sorters, balls, toy instruments and tools, books, puzzles, pop-up-pals and more.

Brian and I gave him our big present the day before so he could take it trick or treating… his very own Radio Flyer wagon. He wanted to help build it, so I gave him his toy hammer and soon he and daddy were both banging away.

It took me most of a day to clean up and make room for it all, but he plays with all the new toys almost every day… getting them out himself. He couldn’t be happier!

And the wagon – oh the wagon – has taught him a new independence. I can put his backpack in the wagon and he will push it around the yard all by himself for an hour or more. Just try to end this game before he’s tired and he’ll cry inconsolably.

Many thanks to those who helped to make Patrick’s birthday party a success. Those who helped cook, host, setup or cleanup. Those who made extra effort to come. And those far away who couldn’t come, but sent presents.

We all know what an absolute miracle this 2nd birthday is! Thank you for sharing with us in celebrating a momentous day!

Happy 2nd Birthday Patrick

Not many people get sentimental around Halloween. In our house, we just can’t help it.

2 years ago at 3:07 a.m. Eastern Standard Time, Patrick made his way into this world with much excitement. Doctors swept him out of the delivery room and into the operating room. The prognosis for him was grim. At first hours or days, then no more than 1 or 2 years.

That’s what we were told a few days later when we first heard about Patrick. Infections or liver failure would take his life within the first couple of years ago.

We were scared to hear that news and not sure what the future would hold. But there was something special about that beautiful little boy with the angel eyes and we loved him more each time we told his story and looked at his picture.

Last year, when we celebrated Patrick’s first birthday it was a big event. We almost lost him that year and his mere presence at home with us that day was a cause for celebration.

This year, not only is Patrick still healthy and still home, but he is amazing us as he grows bigger and stronger with each passing day. I didn’t imagine when we met Patrick that he’d be the vibrant little boy that his is now at age 2. On his first birthday, we had even more reason to wonder whether we’d ever see that day.

Patrick is walking. Not all of the time, but often and with more confidence in every step. He is learns more words all the time and loves having you teach him words for the toys he finds of the books you’re looking at. He loves the people he loves with an enthusiasm that’s hard to describe. He loves cars and Elmo and pushing his brand new birthday gift wagon. He kisses us goodnight every night and gives me hugs and kisses every morning. He adores his Daddy. He gets into trouble with his friends in music group. He likes chips and french fries and drinking from a straw.

He’s an amazing little boy whose love of life is contagious.

Happy Birthday Patrick. May this be one of many, many more!

Outpatient

Last entry, I wrote about Patrick coming down with a common childhood illness and how much more complicated that is for him.

Well, as predicted, this illness definitely had it’s impact. The day after that blog entry, Patrick started throwing up. As it turns out, herpangina, better known as Hand, Foot and Mouth is caused by a series of viruses that live in the intestines. Symptoms indicate that Patrick’s was caused by one called “enterovirus.” As a result, Patrick started to lose so much fluid by g-tube that I was having a hard time keeping up replacing the fluid.

By the time Brian got home from work, he was pale and weak, running a fever, and we were worried. I put a call into Patrick’s GI to ask if they wanted to check blood cultures. By the time they called back to talk about putting in those orders, we’d changed our minds and asked if he could just come in for a night of observation. The night went well and Patrick was obviously feeling better with no additional treatment and by morning, we were asking to go back home. (Especially since we’d barely gotten any sleep.)

By early afternoon, we had been officially discharged when we discovered another problem. When I went to connect the TPN, one of Patrick’s lumen’s wouldn’t flush at all. I tried a few times without success. But we were sleepy and his nurse timid. We’ve unclotted lines lots of times at home. He still had one working lumen, so I said “let’s go.” On the way home, I made calls to get the anticlotting agent sent to me.

All night long I tried to work it, getting up every couple of hours to try again. It just didn’t work. By morning, I knew it was a lost cause for my efforts. But by this time Brian was also sick, I hadn’t slept in 2 nights, and Patrick needed rest. So I made phone calls instead of running in. Eventually, we made arrangements to go in to have the hospital staff try to unclot the line. We arrived around 8 p.m., (we asked to wait until we’d at least had Brian’s birthday dinner with his parents)… And the nurse tried all the things I’d tried. Finally, at midnight, we declared it a lost cause and they sent us home.

Patrick’s doctor called the next day to tell me that, as we suspected, Patrick would need a new line. And we went on, finally feeling a bit better, with celebrating Brian’s birthday. We took Brian shopping for a few big wishes, then went out to dinner. That was all the energy any of us had.

I talked to surgery the next day to make arrangements for the new line to be placed. Since Patrick still had sores in his throat and his surgeon was out of town anyway, we scheduled it a week away on Tuesday.

That was a week ago today. The surgery went well. We checked Patrick in at 6 a.m. then talked to the nurses, surgeon and anesthesiologist who’d take care of him. The anesthesiologist said what we all know, “He looks a lot better in person than on paper.” Still, even minor surgeries can be major for Patrick so we didn’t really relax until his surgeon came and told us all was well.

The only complication was that Patrick was bleeding fairly easily. But that seemed to be under control. We came home and I sent Brian off on a business trip to DC the next morning.

His occupational therapist came the next morning as I was trying to find an assistant for the day-after-surgery dressing changes. Since we’ve been specifically trying to help him with those, she volunteered to help. All went smoothly and we were playing with her after when I noticed that I could see blood on the new dressings.

I peeked under his shirt to find that the old line site had bled since the change so much that it had soaked the dressing and was now soaking into his shirt. So his OT made a quick departure as I called the hospital who suggested I change the dressing again and apply pressure. It worked and he went to sleep.

But, come 6 p.m. the same problem came back. I called the surgeon on call this time and got the same instructions. They worked again, but I realized that Patrick needed to be helped to be a little less active until things healed.

Lucky for him, we’d bought a zoo pass the weekend before, so I packed him up and went to the zoo where he’d be strapped down in the stroller for the morning. It worked and we had a great time looking at the animals (I think the zoo deserves a separate post)… He only scratched off his dressing once while we were there, and I was able to get a new one on without any bleeding at all! And I managed to keep the IV tubing away from the stroller wheels until we were exiting, when they got tangled so badly they broke, but fortunately I pulled off a quick tubing change without any incident and we made it home safely and ready to nap.

He seems to be healing just fine from the surgery now… and his sore throat is gone. His tummy even was better for a couple of days. He’s back to losing a ton of fluid again this week which means either the enterovirus is still there… or he’s been exposed to something else… which is possible.

It’s work sometimes to keep Patrick outpatient, but as my next posts will show, it gives him the chance to experience the joys of life, which makes it worth all my work.

Sorry this entry is so long! Between Patrick, Brian and myself being sick at various times and me “playing Florence Nightengale” as Patrick’s case manager put it, this is the first chance I’ve had to catch up stories. I thought I’d start with the medical first so I can follow with tales of fun later.

Adoption Reflections: The best gift

Today is my birthday. Brian’s been asking me for weeks what I want for my birthday. The problem is, last year I got one of the best birthday gifts that I could have ever wished for. And this year… well, I can’t think of much more I’d wish for.

Last year my birthday was a pretty quiet event. My mom had flown home to Utah after a great week together. (She was good enough to blog about this.) I’d picked Brian up at the airport the day before. Patrick was recovering from surgery and was pretty out of it.

My mom had told a few of our favorite nurses that it was going to be my birthday.. so I was greeted with birthday wishes when we arrived at the hospital in the morning. Patrick was just waking up. For a kid who’d just had surgery, he looked great!

But that wasn’t the biggest event of the day. See, in Michigan, the birth parents have to go to court to relinquish custody. We’d been told that this process could take weeks, if not months. Until then, although we had rights, so did the birthparents – and in a hospital situation, with privacy laws and medical consent to worry about, the result was some awkward situations for us as adoptive parents.

The lawyer at the adoption agency had made some heroic efforts and gotten a court date just over a week from the time we signed our adoption paperwork. That morning, Patrick’s birth mom and dad went to court.

We met them for lunch shortly afterwards. I’ll never forget the image of Patrick’s birthfather comforting his birthmother as we walked into the restaurant. We had a nice lunch and got to know each other a bit better. This was the first chance we’d had to meet Patrick’s birth father. I tried to remember it all so I could tell Patrick about them someday.

Then we went back to the hospital. One of the best parts of time in the NICU with Patrick was naptime. He was in a very nice room with a comfy recliner. We could sit for hours in that chair with him snuggled up. With this sweet little ball of baby on my chest, the lights dimmed, and music playing in the background, it was impossible not to fall asleep sometimes. We called them “Patrick naps”. They were the highlight of my day. So after lunch, Brian and I each took a turn with a Patrick nap.

That night, we splurged a bit and went out to Benihana for dinner. My birthday cake was this funny little ice cream roll with a pink paper umbrella stuck in it.

This birthday didn’t have wrapping paper or candles. No one sang “Happy Birthday”. I didn’t have a party until weeks later. I didn’t get any cards. I didn’t even see most of my friends or family.

I didn’t open any gifts on my birthday. But I did get the best gift of all. Patrick was officially ours. I was officially a mom.. and best of all, it happened on the day I’d set as my arbitrary deadline. I didn’t want to turn 29 without being a mom.

Patrick’s life has been one of the best gifts I’ve ever received. He has healed sorrows I didn’t think could be healed. He has taught me patience and courage and love.

So please forgive me if this year I’m not very worried about present or parties or cakes. This morning Patrick grabbed my hair and pulled my face down to his and give me a big wet sloppy kiss right on the mouth. That is gift enough.

Patrick’s 1st Birthday Party

Patrick had SUCH a good birthday! He could tell from the party preparations the night before that something good was going on. He watched me decorate his birthday cake… and then was too happy and excited to go to sleep.

He did, though, finally, and when he got up in the morning, he was again just HAPPY! It’s like he knew this was a big day.

Because Patrick’s birthday is on Halloween, we dressed up and invited guests to do the same. We chose a circus theme for the party. Patrick was dressed as a monkey. Brian was the ringmaster. I was a clown.

We spent the morning finishing things up for the party. He thought watching me hang streamers was great fun! (I used red and white streamers to create the feel of a circus tent in our living room.) About 1 we changed into costumes.. he loved my clown wig and played with it for most of the rest of the day.

Slowly the guests arrived. Because Brian and I have brothers, sisters and parents nearby, we knew there would be a lot of grown-ups… so we made all the circus activities self-serve. The adults helped the kids paint their faces and learned to make balloon animals for them. We had popcorn and animal crackers and caramel apples.

Of course, most everyone came in costume. Some carried on the circus theme… My dad came as a lion tamer, with my mom dressed as his lion. My brother was a magician.

Some of the friends and family who dressed up

Once everyone arrived, we sang Happy Birthday and Brian blew out Patrick’s candle. (Patrick was too confused about why everyone was singing and just kept watching me to see if it was OK.)

He’s not allowed sugar, so he couldn’t have cake, but he was given permission this week to have cheetos and hulless popcorn, so that’s what he munched on instead.

Daddy’s better than any boring old snack.

Then we opened presents. He got lots of new toys and some new clothes. He loved them all, but I think his favorite thing about the party was not the gifts, but the fact that all the people he loved best were there.

Patrick & “Papa”, Brian’s dad

Patrick and Grandpa, Emily’s Dad

The party wrapped up around 6. All the kids went home with hands full of balloons, balloon animals, caramel apples, and cracker jacks with faces all painted. I think everyone had a really good time!

That put us just on time for trick-or-treaters. Patrick didn’t go trick-or-treating this year… he’s too little and not allowed candy anyway. At first he liked seeing all the people who came to the door. Eventually he got tired and not too happy when people would ring the doorbell. Eventually I sat him on my lap and we read books until we were sure he was good and tired. Then, we turned off the porch light and put him in bed. He was exhausted, and so were we.We all crashed for the night.