Category: Uncategorized

Patrick is starting to take a real interest in dressing himself. The result is some very interesting moments in toddler fashion. Here are some favorites from the past few months.

The best part of it all is that he loves seeing watching himself. He runs to the mirror with every clothing change… and yes, dances half dressed in front of the mirror before baths, too. Because clothes are fun and, heck, he’s cute and we all know it.

Because Christmas fell on a Sunday this year, our Christmas celebration was a three-day event.

First of all, Brian had Friday off of work. So this year, as Christmas Eve was scheduled to be quite busy, we went to the zoo on Friday instead.

It was a COLD day at the zoo. We were grateful for warm blankets, hats and scarves. Also, there was hardly anyone else there. (Part of the reason we love to go around Christmas.) Ironically, though, one of the only other groups there was the family of one of our favorite homecare delivery drivers. It was kind of fun to introduce Patrick to his family and explain to them how important his job was to us.

We also saw some animals and let Patrick run as long as he could before he got too cold and needed snuggled up in the wagon some more.

Christmas Eve was Saturday and we started that day out with my family. Every year my family has a big Christmas brunch. We make far more food than we can possibly consume, squish into a house that by all rights should not hold all of us, and just soak up some holiday cheer.

Because of work and family schedules, this is also when the nieces and nephews open presents. It’s pure madness. And a wonderful tradition.

Then, stuffed as can be, we came home for naps before moving on to our second Christmas get-together.

Brian has a brother who lives in North Carolina. And this year, his second daughter was being baptized. So, his brother rented a beach house and invited the family out. Sadly, because that’s very far to travel with Patrick, very expensive, and happened to be planned just one week before Patrick was due for a checkup in Seattle, we didn’t go to the beach house. (Brian went to the baptism while Patrick and I stayed home, but that will be the subect for another blog.)

Still, because Brian’s parents were flying out to North Carolina on Christmas day, we had our Christmas with them on Saturday night, Christmas Eve.

We ordered pizzas to keep cooking and cleanup simple. (Though Granny threw in a yummy homemade mac n cheese and some monkey bread, regardless.) Then, after dinner, gathered to visit and exchange gifts.

Granny bought Patrick and his younger cousin Sesame Street buses. Patrick’s had his eye on this bus for months and was quite happy to see it. Still, the presents held more allure and he ran around and helped open everyone else’s for them.

Then, we came home and rounded out Christmas eve with some traditional presents: pajamas and a Christmas book to read together before bed.

A Sunday Christmas made for an early morning. First, Brian got up early to run his parents to the airport. This meant I was up way too early because, face it, I get too excited for Christmas and can’t sleep.

We woke Patrick to open presents. But, since we needed to get to Church, we started with his first present in his room: a new suit. Yes, he opened presents in a suit, not PJ’s this year.

Opening presents was so much fun! I wrapped lots of little things because I knew that opening was going to be half the fun this year. And boy oh boy, it was. Patrick would open a gift, admire it, then look at me and say “mo-mo peh-peh” (more presents.)

Santa brought a basketball hoop. Patrick put all of his presents through it all morning.

Patrick’s stocking was filled with toy cars, including Mater, McQueen and a school bus. Plus some gum and bottled water.

He also got lots of books, clothes, lacing beads, stickers and from his cousin, a remote control car. That car has been one of his favorite gifts so far… Though his favorite way to play is to put the car on the table or other high piece of furniture and drive it off.

Church was at 10 and was a combined sacrament meeting. (That means we met with the other congregation who shares our building… therefore we sat at the back of the room where the chairs were metal and the floors hard and echo-y.) Patrick played with a couple of toys I’d gotten just for the occassion and lasted well until the meeting ran over an hour and his attention waned.

We rushed from church to my parents house to be able to Skype with my brother, Dave, who is serving as a missionary in France right now.  That was fun, though Patrick kept trying to show things to the screen instead of the camera.

Next was dinner at my grandpa’s house. That was another madhouse of family, but it was fun enough… at least until Patrick started to feel that it was 3 p.m. and he hadn’t napped, despite getting up early.

By then, it was time to go home. We’d planned to have our family Christmas dinner that night, but we were so full and tired that we opted to postpone it for another day.

Instead, we spent the rest of the day being lazy, playing with new toys and enjoying the chance to be at home.

One of best gifts I got this year came on Christmas Eve morning. I wished Patrick a Merry Christmas and he grinned and replied “Merr-mee Mas-mas.” Sweeter holiday words were never spoken.

This Christmas season, Patrick was old enough for Christmas to be a little bit magical. The lights, the music, the parties, the trees all held a little more wonder for him than they have before, and therefore, held more wonder for us as well.

We couldn’t walk in or out of the house without Patrick stopping to touch and look at the lights on the house. The Christmas tree was mostly safe, except the ornaments bought just for Patrick this year. Those toured the house throughout the season.

Thanks to last year’s Christmas book, “Away in a Manger,” the nativity scene was amazing to him. We stopped to look at the “ger-ger” every chance we get. Thank goodness for an unbreakable nativity Granny gave him last year. And his preferred lullaby changed from “I am a Child of God” to “Away in a Manger.” Which I still have to sing to him every day, while he echos “ger-ger”, “baby”, “sseep” (sleep) and “Dee-sah” (Jesus).

Santa was a little more confusing to him. Whenever I’d tell him that Santa was going to come and bring him toys, Patrick would answer “Jo!” – the name of the child life specialist who brings him toys to play with whenever he’s admitted to the hospital. And, well, she might beat Santa a bit, because she brings new toys every time Patrick needs them, instead of just once a year.

But, at least Patrick wasn’t afraid of Santa this year. He met him twice. First, we waited WAYYY too long to see him and get pictures at the Festival of Trees this year. But, other than preferring to look at Santa than to smile for the camera, it went over well enough. Better yet, Patrick actually cared about the trees at the festival this year, especially the ones that had trains or cars or wagons.

Our second experience with Santa was at the HopeKids Christmas party. That was a much smaller event this year than last. That probably is a good thing, though, since Patrick was coming down with a cold and developed a low-grade fever while we were there.

Nonetheless, this time around, Patrick and Santa were friends. Patrick tried to share his pacifier with Santa and put a sticker on his beard. Beats tears, any way it goes.

The rest of that party was crafts and games. Patrick’s attention wasn’t too great because he wasn’t feeling well. We played with a few stickers and crayons, and he “played twister,” or at least did what it looked like to him the other kids were doing. And then we made a quick retreat.

The party was worth it for Patrick, at least, though, because he came away with a “Ho Ho HopeKids” t-shirt. And since Patrick was all about “Hah Ho Ho” (Don’t mispronounce that first word), he was happy enough.

And, as if that weren’t magical enough, we had orange sticks around the house a bit too often because of the holiday and, as I’m a sucker and can sometimes be persuaded to break the rules in the name of enjoying life, Patrick discovered the joy of “Thaw thaw”.. a.k.a. CHOCOLATE.

I tried introducing him to cookies, too. One day after picking Patrick up for school, we ran into my sister-in-law Amanda at the grocery store. So, we invited her and her husband Steve to help us make cookies. My plan was to get an early start on neighbor gifts.

We made pie cookies for Patrick first. (Cookies cut out of pie crust are allergy safe and fairly sugar free, and so Patrick could experience cookie cutters that way.) Then we switched to make butter cookies with my cookie press. Patrick LOVED putting sprinkles on the cookies. A little too much actually. We had some serious tantrums trying to control where the little sprinkle bottles went.

But alas, the cookie dough had a bit too much butter or eggs in it and by the time Brian got home from a late meeting and took Patrick to get ready for bed, Patrick was starting to get spots. It took 2 doses of Zyrtec and an instant bath to turn that reaction around. It was one step shy of anaphylaxis. So we learned our lesson about cookie dough…

And our neighbors got Otis Spunkmeyer premade cookie dough cookies instead.

Still, it was a magical Christmas season. I hope never to forget seeing it through Patrick’s 3-year-old eyes.

I can’t believe it’s been a whole MONTH that Patrick has been attending preschool! “Koo koo” (School) and “Aaa” (Ann – pronounced with tongue protruding) have quickly become a highlight in Patrick’s week.

He started the last week of November after a long wait to get the medical plan for Patrick written. It took so long that I quit preparing so I wouldn’t get nervous and then had to make a mad scramble to finish off supplies the night before school. (In case of emergency, we keep a gallon sized bag of central line supplies and another gallon size bag of g-tube supplies, an epi pen and three bottles of medicine in the school nurse’s office… not to mention the backpack full of diapering supplies that Patrick carries to and from school. He also has a 20 page care notebook, including a detailed emergency plan for every thing I could think of that could go wrong.)

The first day, I got to go to class with Patrick. We went first to the nurse’s office so I could train the nurses on all the supplies that Patrick carries and the most likely problems with each.

Then, his teacher came and got him so he could play in the sensory room while I finished up. The sensory room is a room filled with lights, sounds, cushions, a ball pit, ramps and slides and other fun things. Patrick was nervous at first, but loving the remote control of the lights by the time I got there. Patrick’s class goes to the sensory room or the gym for recess in the winter so that the cold doesn’t affect their health. After seeing this room, I think the other kids are the ones missing out.

After the sensory room, we went back to class for circle time and then skills practice. They were working on folding that day, so Patrick folded a rag and then a piece of paper. (Now he thinks he can fold laundry.)

Then, his group switched over for speech. Patrick and two other boys sat at the table and took turns playing with balls that had toys hidden inside, while learning to ask “I want”. It was a simple activity and Patrick preferred to throw the balls, which made the other boys throw the balls, too. But it really impressed me to watch because I realized that the other kids talked like Patrick talks. In fact, as I watched the rest of the day, the other kids played like Patrick plays.

For the first time in probably his entire life, Patrick was among peers. Kids who weren’t ahead of or behind him. Just with him.

They did toy time next and Patrick’s aide (yes, he has been assigned a designated aide to stay with him and protect his line in class) got a good lesson in how quick he can be and how much you have to watch him. Meanwhile, the teacher went out of her way to make sure that Patrick didn’t just play alone, but was invited to play with the other kids, too.

Next was snack time. They had pudding, which was a good chance for me to demonstrate how careful we have to be around messy milk products. Patrick had fun eating pretzels at the same time as Teacher Ann.

And then, as eating always creates a need, we headed to the changing room for a diaper change. They called the entire nursing staff, the teacher and all the aides into the room so I could show them how to use Patrick’s diaper creams. (Good thing Patrick isn’t shy or modest yet.)

Then, the pumps alarmed with air in the line so I got to show the nurses how to handle that, too.

And one story and circle time later, it was over.

Patrick’s teacher warned me that it would be hard to leave the next time so I’d better plan distractions.

Good thing it was Christmas time because although it was a treat the next class day to go get a haircut for the first time in 3 years without needing reinforcements… that didn’t take long enough, and I ended up killing time by Christmas shopping and writing letters.

In fact, our pocketbook probably feels that adjustment a bit, as Christmas shopping is how I got through the next several class days. I didn’t dare go home for fear they’d need to call me back.

It was a few weeks before I finally made it home, only to walk in and find Patrick’s diaper kit in the living room and have to run it back.

But I am proud to say, at long last, that I am learning the joys of that time at home. Cleaning is so much easier and my house, now that Christmas is past, is beginning to feel like it’s in order without major effort to get it that way.

Patrick is blossoming in school. I don’t know a lot of what he does there because he doesn’t talk enough to tell me about it. But last week he brought home two sheets of paper covered in obviously very guided examples of the letter F. And now Patrick is trying to pronounce that sound in his words.

He loves checking books out from their classroom library. And he loves P.E. “Ba Aaa” (Ball Ann) is one of the few things Patrick will tell me about his day.

And so far, his biggest medical emergencies have been one leaky diaper and one closed central line clamp that earned him a trip to the nurse’s office. (Maybe one day they’ll be brave enough to silence the alarm and check the clamps before making this journey, but who knows.)

A month of school is really only about 9 days so far, so this is all still new and we’ll all get smoother as things go along.

Any way it goes, Patrick loves school. And I love that he gets the experience. There could not be a school or class or teacher better suited for him right now.

I am a very, very lucky girl. I have two wonderful men in my life. They make me so incredibly happy! Tomorrow I’ll celebrate 8 years of marriage to my best friend, Brian (though you may call him Howie). Two days ago we celebrated 3 years since we were able to bring Patrick home for the hospital for the first time. These are my boys and I am very happy to have them in my life.

You might think it’s special when your husband takes you out for a nice dinner alone. I do, too. I love dates with my husband. We went to a Blue Man Group concert yesterday, just the two of us, and it was nice to be together just us.

But more often than not, when I go out to a nice restaurant, I am accompanied by both of my boys.

And yes, although we went alone to the concert, Brian and I took Patrick along for our anniversary dinner. We were in the neighborhood of a nice Italian restaurant we wanted to try because we’d gone to look at Christmas lights, and so, we took Patrick and we went.

Patrick is a real fan of gourmet food. He’ll go entire days where he barely eats at home.. But take him into an expensive restaurant, and he’s all about trying new flavors. He insisted on sharing my ” ‘ghetti” with me. Kind of tricky, since he’s allergic to the eggs in the noodles and to cheese.. But we managed to get by dipping bites of potato in the tomato sauce.

A few nights earlier, we were eating out and he got really excited telling me “tee tee”.. I didn’t get, till he added “gob gob gob” that he wanted the turkey from my sandwich.

And let’s not even mention his opinion of chocolate syrup. Ordering dessert is requiring a lot more caution these days.

But, for a three-year-old (and one who really barely eats) he really has pretty good restaurant manners. He puts his napkin in his lap and he is quite happy with a cup of water and a straw for most of the meal. The crayons are just a distraction, mostly, and often end up on the floor. But, so long as the people around us aren’t sitting too close or aren’t too determined to engage him in conversation, he’s really quite the nice date.

Last month, my two dates took me out for my birthday. Can I tell you this was one of my favorite date nights ever? Brian came home early from work and took me to eat at the Garden, a fairly nice restaurant on the 12th floor of the Joseph Smith memorial building that overlooks downtown Salt Lake City, specifically the Salt Lake temple.

After dinner, we went to the windows and admired the view for a little while.

Then, we went down to the temple grounds. If you’re not familiar with Salt Lake, Temple Square is a two block area of the city filled with beautiful gardens and fountains. We wandered the gardens and then went into the visitor’s center where paintings of Christ 10 feet tall adorn the walls. We wandered upstairs to see the Christus statue and then downstairs to see the exhibit on prophets and scriptures.

There is a joy that wandering around temple square with my two boys brings that is uncomparable to anything else in the world. I feel so blessed when we are there.

And so, of course I thought I was in heaven when we were back there again this Friday night to see their Christmas light display. (Patrick walked around the entire temple and touched every window he could.).. And then out to dinner. Then yesterday, a one-on-one date with the love of my life.. followed by a family date to Rumbi for dinner, where Patrick chowed down on rice and soy sauce, one of his new favorite foods.

Yes. With my husband by my side and my little boy often hanging from our hands between, I am very lucky in love.

Yup. I jinxed myself. By drawing parallels including a hospital stay in my last blog post, I jinxed myself. Or Patrick. Or something.

Oh, and I’m a bad, bad blogger as this story will have to go back 3 weeks to explain.

3 Sundays ago, I was trying to do the dishes and Patrick was trying to help me do the dishes and it wasn’t going well at all. So I kept turning him around and sending him back to the living room to play. And guess what, he did! He went and played and let me finish the dishes.

Only, when I got to the living room after the dishes were done, I found that Patrick’s tubing had gotten caught on the phone stand in the kitchen… and he, being urged to go play, had… He’d gone as far as he possibly could, pulling the line taut enough to pop open the safety pin that secures it to his shirt.

I immediately got the line unstuck, but the lumen that had been stretched looked, well, stretched. It looked longer than the other one.. and on closer inspection I found that Patrick had pulled hard enough that the tiny little plastic piece on the end had been pulled out of place.

I cleaned it and wanted to just leave it, but the cautious part of me said to at least have IV team check it out. So, we got Patrick’s pajamas and away to the hospital we went for the evening.

IV team looked, but they weren’t any more sure than I was what you’d find inside the line, and so decided it was best to cut off the end and use a repair kit to replace it. The work was quick and he was only an hour late for bedtime.

Thursday, though, I noticed that Patrick’s shirt was wet in an odd spot and it smelled like TPN.  So I called a neighbor to come help me to take off his dressing and look for leaks but couldn’t find any. We put on a new dressing and decided to watch it.

That night Brian worked an all-nighter. At 3 a.m. I woke up just wide awake. If you know me, I don’t do that.. at least not if things are ok. But there I was, not sleeping… and then Patrick’s pump alarmed. I went in to check and found that the repaired side of his line wasn’t under the dressing in anymore and was all tangled, causing the pump to alarm. He was also wet again… with a sticky sweet liquid like TPN.

So, I switched out the lumen that the TPN was running through and flushed the other only to, once again, not be able to recreate the leak. I came to the conclusion that the repair was probably leaking, but only when there was an occlusion and pressure built up. I also came to the conclusion that he hadn’t slept well so far that night and could use more sleep. He had an appointment at 10 a.m. that we’d waiting weeks for and I opted to leave things as they were until after that appointment then go get it repaired.

He, however, came to the conclusion that he didn’t know what time it was and didn’t want to go back to sleep and it was one very, very long night!

The next day we headed up to the hospital, explained my theory about the repair being faulty, and they cut it out and repaired the line again. They were so busy that it was well into the afternoon before that was all done. But the line worked and went went back home.

Sunday, except for church, Brian spent the whole day making a fabulous Sunday dinner for his family in celebration of my birthday. Patrick did great through the whole dinner.

Then, family left and I flushed his line, ethanol locked one lumen and connected TPN to the other. Within half an hour, Patrick started to lay on the floor and beg to be held by daddy. These are both signs of him not feeling well, so we grabbed a thermometer to check and his temperature was up, but he didn’t yet have a fever. We kept him up an extra hour to watch, but a fever never came.

Finally, we put on his pajamas, gave him his meds, said prayers and put him in bed. But less than an hour later, he woke up crying. I knew as soon as I picked up him that he had an infection. There’s a certain cry and a restlessness in his legs and a certain way he arches his back. The thermometer did not agree, but I made Brian pack our bags regardless.

Before the bags were packed, Patrick had a low-grade fever. I called the doctor on call to explain symptoms and tell him I was bringing Patrick in. He told us to go directly to the E.R. Before we left the house, Patrick’s temperature was 102.

Thankfully, the E.R. was unusually slow for a Sunday night and we got quick and ample attention. They gave Patrick some Motrin right away, as his fever had reached 104 on the drive up. They took his vitals, drew blood cultures and a CBC that showed a low white count. (Last infection came with a low white count, so this convinced me he was sick.) And then they started him on antibiotics.

Amazingly, he fell asleep in the E.R. and when we got to the floor just after midnight, let me rock him right back to sleep again. By 2, he was feverless and sleeping peacefully in his own bed. It was our smoothest admission night ever.

We waited 48 hours more, but the blood cultures never grew to explain the fever. This doesn’t mean there was no infection. The timing of the fever indicates that there was bacteria in Patrick’s line and when I flushed it to connect TPN, I flushed it right into his heart. However, what it does prove is that we caught the symptoms SUPER quickly and treated the infection before it grew in the bloodstream. The ethanol lock most likely killed any evidence there was of it in the line.

It’s getting harder and harder to keep Patrick in a hospital room. He has to have monitors on for the first day and staying close enough for them to read makes him stir-crazy from the get-go. Thank goodness for child life specialists whom he knows and trusts, who bring him toys exactly suited to his tastes, and who will play catch with him ad nauseum.

I taught him to hide in the cupboards this stay and he spent most of his playtime going in and out of them.

Our second night in the hospital, Patrick went right to sleep. However, his nurse came in just an hour later, leaving the door wide open for light and started talking to me in what I call her “daytime voice” to tell me about how to safely give Patrick’s replacement fluids. (Sigh. As if I didn’t already know.)

That set Patrick to tossing and turning and nothing I did could settle him. An hour later, he was wide awake. We watched Bob the Builder 3 times. He discovered the fun reaction you get when you slap mom in the face repeatedly. Finally, at 2 a.m. the nurses took him for a walk so I could grab a nap.

Rested and calm again, I went and brought him back to the room and finally got him to sleep. But alas, within half an hour, he was back to tossing and turning violently. Something obviously felt off, but I couldn’t figure out what.

At 4, I asked the nurse to track down help for a priesthood blessing. She came back with our favorite nurse from Patrick’s surgery recovery. Patrick was happy to see him. Then, the doctor came and we talked about options and decided to give Patrick some melatonin to help him rest. He fell asleep right away and slept till noon.

We hit 48 hours on cultures that night at midnight, but as we hadn’t slept the night before, I’d accepted the offer to give Patrick a little more melatonin to help him sleep. This is good because we had the same nurse again the next night. Not only was she just as noisy, but the evening started out so crazy that Patrick just ended up crawling onto my lap on the bed and falling asleep while she tried to finish his scheduled cares, meds and vitals for the night.

He slept well till 5, then was wide awake asking for the nurse to check his BP. So, we got up and had a pretty fun morning wandering around the hospital visiting his favorite nurses in the other units. We found a pod in infant unit that was completely empty and one of Patrick’s favorite primary nurses said it was ok for him to play there and move the furniture. He did for nearly and hour.

And then, Brian took an early lunch break and brought us home. We were home by noon and slept all day.

So far, Patrick’s symptoms have not returned.

Overall, it wasn’t a bad hospital stay. He played in the playroom for several hours. We visited spiderman I don’t know how many times. We discovered that he likes chex mix and that it’s safe for him to eat. He got his very own badge pull and we made friends in the cafeteria.

But, I think we’ve seen our share of hospitals for the holiday season. I am hoping that Patrick agrees.

I’m still struggling to wrap my mind around age 3. Patrick seems so much more grown up. He’s doing so much more than I ever imagined on his own.

And I’ll admit that, while I’m excited about the 6 hours a week that I’ll have to myself while he’s in preschool, I am having a bit of a hard time with the idea of being away from him for 6 hour a week.

But right at this moment, I’ve been given a rare gift.

My calendar for the past 2 weeks has had one appointment on it. A 15 minute appointment scheduled for tomorrow morning.

Right after signing Patrick’s adoption papers, there was nothing more I could do than just sit in his hospital room with him and just get to know him, love him, enjoy him.. because we were waiting for everyone else to get things in order to bring him home. Those were some of the best days of my life.

This year, again Patrick and I are spending most of our days alone together, just the two of us. Meanwhile, the doctors and dietician and their nurse and the district and school nurses have been meeting and working on Patrick’s healthcare plan so he can go to school.

And while we let other people hammer out the details of the paperwork (and try not to call too often to offer help), I am able again to get to know him, love him, enjoy him.

Sure, we’re making each other a bit nuts. He wishes I’d just quit trying to accomplish things and play with him. I wish he’d quit tugging on my arm while I try to type or quit emptying my laundry basket as I fold the laundry.

But inbetween that, we have played playdough and taken him around the neighborhood on his new tricycle and eaten forbidden treats together. (Patrick loves cookies and chocolate. And is not supposed to have either.) We went to Barnes and Noble for story time, which was fun but too short. Then we went to library story time and that was much more fun, but some of the books were too long. We renewed my driver’s license, which took 2 hours and was no fun, but afterwards as a reward, we went and got french fries and played on the slides at Arctic Circle, which almost made up for it.

We’ve had tickle fights on the bean bag chair. We have read every book in his bedroom at least once, and Mr. Brown Can Moo at least 3 times a day. We’ve eaten lots of pretend food. We have played playdough on the living room floor. Patrick broke his line, which wasn’t fun, but also wasn’t too hard to fix.

I took him to his first theater movie yesterday. We saw Cars 2 at the dollar theater in the 3:00 matinee. We arrived twenty minutes late, just on time to catch the last seconds of the last trailer. Patrick was afraid of the theater at first and just cried, but once he saw Toy Story with Mr. Potato Head on the screen, it was ok… so long as I covered his ears.

He got good at putting my hands on his ears when it go too loud, then he’d check to see if it was still loud by uncovering them, then quickly putting them back on.

His line came disconnected half an hour into the show and I didn’t catch it till my lap was full of blood. But he was ok, and the TPN had just ended, so we sat down on the theater floor and I disconnected him.

It’s good we had the theater to ourselves.

Then he ran down to the front of the theater to see the screen up close. And then ran up and down the aisle for about 15 mintues, asked to leave, then as soon as we were out the door, begged to go back.

He stayed for the entire movie.

Today the dietician called for help completing the school district’s medical forms. That means that this little break is drawing to a close.

I’m both incredibly anxious for him to go to school and sorry to see it end.

I like sleeping in and not having any rush to bathe and get dressed. And I like playing on the floor with Patrick all afternoon. And I’m not sure I’m quite ready for my little boy to start doing such a big boy thing.

But I know he’s lonely. He misses his therapists and he misses his friends from his classes and he’s ready to move on.

And really, so am I.

But I’m grateful that I’ve been given these few weeks again… just like I had with him right after we met.

And soon we’ll be ready to face age 3 head on.

He’s three! Can you believe that? Three!! No one.. NO ONE talking to us about Patrick’s prognosis ever lead us to hope for a third birthday.

Perhaps that is why I felt so much pressure in planning this year’s birthday celebration. Because really, it seems like every year is just one more amazingly huge and miraculous BIG DEAL. I let it psych me out. Thank goodness for a good husband who grounded me a bit and reminded me that we mostly needed to plan this birthday for Patrick.

And so, we did a whole lot of what Patrick liked to celebrate his birthday.

To begin, we started celebrating the Saturday before his birthday. No matter what, it’s still awfully hard to compete with Halloween celebrations, and so since he’s still too young to tell the days apart, we spoiled him rotten a few days early.

Saturday afternoon, we met Brian’s sister and her family and my sister and her family and Brian’s dad at the zoo.  It was trick-or-treating day at the zoo so it was a little crazy with masses of people and lots of costumes. And because of that, we didn’t allow a lot of time. But, we still managed to fit in a ride on the carousel, and we saw the tigers and giraffes and elephants.

And then we had all the cousins (one in costume) gather for this picture and they were all very cute…

Until Patrick pushed his littlest cousin off the bench onto the ground, and then we decided it was time to go.

The next stop was Tepanyaki Steakhouse, one of those great Japanese restaurants where the chef cooks your meal right in front of you with all kind of fun and fire.

All the grandparents met us here, along with some aunts, uncles and cousins. There were enough of us to need them to connect the tables together, which is something I didn’t even know they had a way to do. (Sorry to my mom and dad who got stuck at the little spacer table.)

We came for the soup, which is still one of Patrick’s very favorite foods. The show and yummy food for us was a bonus.

The waitress was even kind enough help us sing to him, even though he couldn’t have the free dessert to come with it. You should have seen him smile when he heard his name in the song!

It was a good day!

We did Patrick’s birthday cake (for the first time) on Sunday at our family dinner with Brian’s family.

This year, we chose Bob the Builder as the theme for the “cake.” Notice the quotation marks there? That’s because there was no food in the cake this year, either. Instead, I made foam diggers to match the show and put them all around the sides and then spent far more time than I really want to confess to painting a background scene and bricks to match the show as accurately as possible. Finally, we ordered a set of Bob the Builder diggers on e-bay. I’d meant to buy these in a store or online but we discovered that they are incredibly difficult to find. Bless the e-bay seller who managed to get these toys to us on time for the birthday.

The first time he saw his cake, Patrick pretty much ignored the candle. Instead, he said “gih-goh” (digger) and grabbed Lofty from the top of the cake.

When he discovered the cake was full of all his favorite Bob the Builder friends, he was one happy kid.

Then, we opened some other presents and played with noisemakers and then took him home to bed.. we had work to do.

Sunday night, Brian put together Patrick’s birthday present so we could have it waiting for him in the living room as soon as he woke up. I wrapped up a couple of other presents and put them there, too.

His face lit up when he spotted his very own tricycle!

Even though there was frost on the ground and the sun was just up, he had to take it for a test drive. (Yes, it has a handle on the back to allow a parent to steer… This is great while he’s learning.)

We sent Brian to work. Patrick rode (or I pushed him) for the next hour.

Then, he was finally ready for more presents:  new backpack to take to school, and a tool set to go with his halloween costume.

I let him play for another hour, and then we had to hurry and get him dressed. Halloween means trick-or-treating at Daddy’s work.

Of course, Patrick also dressed as Bob the Builder this year. He was really excited about the tool belt. (In fact, wore it every day for the next week.)… And he was very cute trick-or-treating from desk to desk, though he had a bad habit of sticking every candy bar that had peanuts directly into his mouth.

After a nap, we went and visited grandparents where we snapped these very cute pictures of his costume.

 

Then, we rushed home to finish trick-or-treating in our neighborhood. Cramming all that halloween into a birthday is tricky stuff!

But Patrick was happy as he got what he’d really wished for all day, another chance to ride his bike. Yup, he trick-or-treated on wheels this year. And he loved it much more than last year!

Then, we came home and while we warmed up, Daddy helped Patrick to decorate his very first pumpkin. (Sorry, Patrick kept blinking at or turning away from the camera.)

I was so excited to find Mr. Potato Head parts for the pumpkin. He’s not old enough to carve, but he totally got how to do this!

And then we put him to bed.

Because he’s done with early intervention but not yet able to start preschool, I let him keep all the birthday in the living room, including the tricycle, for the whole week. We went for rides and played with diggers and he wore various parts of his costume and played with balloons.

And just as the novelty of that wore off, we got to go celebrate his birthday one more time with HopeKids. The HopeKids birthday party is quickly becoming a favorite tradition for me. Classic Fun Center opens for just HopeKids for the morning. They give families free reign of the inflatables and lift all the rules about shoes and carrying kids and where grownups should and should not be. In other words, they remove all the barriers possible to allow kids a chance to do things they otherwise couldn’t do.

And for Patrick, this is a big deal. Once a year, he can play on inflatables because mom and dad can help.

And so, Brian carried him up the giant slide at least half a dozen times just because he loves the thrill of the big slide. And then he jumped and made him fall over at least 2 dozen times in the bounce area.

This year, they’d added something even more wonderful, though… toddlerland. An inflatable made just for toddlers that was a little firmer for easier walking… and that had a slide that Patrick could almost do himself!

Brian climbed up into the top so that he could move the tubes around. Then Patrick would climb up the steps ALMOST without any help. Brian would help position him at the top of the slide and move the tubes over.. Then Patrick would push off and down the slide he’d go. Then shout “MO MO” (more) or ” ‘GIN” (again) and start back up all over again.

We also visited the blast zone, which was fun but a little bit too loud for Patrick’s taste. Still, he liked the climb to get there.

At last, our time was up and we joined the rest of the group for cake and presents. They sang to the kids and Patrick blew out a candle in a cupcake.

And then, we came home for some well-earned naps.

Sunday was our last birthday celebration. This time with my family.

This time I remembered to take a picture of the cake, though I changed the top. Why? Because at the time I thought I’d like to tell the parties apart, though in hindsight I wonder why.

In the background you can see the cake for Patrick’s older cousin whose birthday is a few days after his. We sang to them both and he grinned just as big.

Then he blew out the candle, but his blow wasn’t strong enough and dad had to help.

And this time the cake was full of replica caterpiller diggers.

And at long last, after over a week of celebrating, we were done with Patrick’s birthday.

That’s a lot of party for a little guy. But, hey, that’s a lot of living and miracles for a little guy.

I should be asleep. It’s bedtime. Everyone else in my house is asleep. But my mind doesn’t want to rest right now. It is running from one topic to another to another and I finally decided that rather than hiding from blogging what’s on my mind, I’m going to dump it all out here in one cathartic rant.

My baby is turning three on Monday.

And turning 3 means that this week is his last week of early intervention. Today the last therapist came to our house that they will ever send. Tomorrow will be his last structured play class and then Friday will be the last of Musikgarten. We’re taking gifts to his classmates tomorrow and the Friday.

It is bittersweet to be saying goodbye to therapists who have become friends and allies, who have gotten Patrick from barely rolling over to an active, happy little boy who 95% of people don’t even know struggles as much as he does. It is scary to feel like we’re starting over.

It’s really a positive step forward. Last week Patrick and I went and spent the morning in his preschool class. It was amazing! His teacher is so kind and so knowledgeable! She is determined to learn how to take good care of him. And Patrick’s face just lit up with excitement as he got to sit with peers and listen to stories and sing songs and do crafts.

He is going to thrive in preschool!

So long as we can keep him healthy. And that is the one scariest part for me. Patrick had follow-ups with 3 of his specialists last week. And so I spent the first part of last week drafting an “Emergency Care Plan” for his doctors to sign off on that would summarize every scary short-gut related emergency that Patrick could have and how the school would need to respond to it. It was 10 pages long. It could have been longer.

And I made a list of everything that I do for Patrick during the time that he is in school so that the doctors can write orders for the school nurses (There are two on site at all times at this school) can do those things for him. That was 4 pages long. I think my assembled notes and new “Care Notebook” are over two dozen pages.

I have one meeting tomorrow to try to cover it all in. And all the pressure of worrying about setting appropriate IEP goals, too.

But mostly, I’ve been able to hide from that. We’ve had enough else going on.

For example, on Thursday morning, I was rushing to get Patrick to an appointment with his surgeon. And, in the blinding, rising morning sun, another driver didn’t see me. We were both going under 5 mph and so the damage is minimal and the other driver does body work for a living and will repair it. But it’s one more thing.

And on Monday morning, while treating diaper rash, I used some stoma powder.. only to have Patrick’s eyes swell up and him start to sneeze. And then while I was looking for what could possibly have caused that reaction found several articles linking severe cashew allergy with pectin allergy. When we saw the allergist for Patrick’s flu shot (Which took 3.5 hours to get!) I showed him an article and asked about it and he said that there was no standardized way for him to test for a pectin allergy.. but that I could probably safely assume that Patrick is at least allergic to inhaling pectin powder. So now I’ve added pectin to the list of possible allergens for Patrick. And have virtually no idea what that will mean.. except no stoma powder. Which I can live with. Until after transplant when he needs a stoma.

And then, because of a bunch of other crazy circumstances, naptime got all thrown off yesterday so he slept into his TPN break. And when he woke up, he was screaming. But I calmed him down and thought things were ok. Until he started to lay on the living room floor instead of playing and whimpering. Thats never a good sign so I checked his blood sugar and it was on the low end of normal. So I gave him some formula.. and I called Brian and we decided to start his TPN early. And then his blood sugar had a quick spike, and then he was ok.

Until today when I got him up from his nap… and he was happy and seemed ok for half an hour, when he got really clumsy and was falling down a lot.. So I put him in the living room chair and ran to get his glucometer.. and walked back into the room to see him just topple head first out of the chair.. and then start screaming. He was ok. Couldn’t even find a goose egg. This time his blood sugar was low, but just barely out of the normal range. So I gave him more formula to drink and some bunny cookies and called his dietician.. Who wasn’t all that concerned, except that she said that a rapid drop in blood sugar could cause problems and to watch more closely. And she told me to start adding corn starch to formula and give it to him BEFORE he gets lethargic as his TPN tapers off. He’s got a mild allergy to corn, though, so I don’t know about that. But at least I’ll make sure he gets some formula and some cookies earlier…

And by the time I got off the phone, his blood sugar was back in the normal range.. But I didn’t feel any better because I don’t know why this is happening every day. It doesn’t seem exactly safe, even though i can stabilize him quickly and safely at home so far.

They’ll do a bunch of labwork on Monday. At least, I hope they will. So that hopefully we can get some answers. And I just realized that Monday is also Halloween and his birthday… and that will be interesting logistics. But we’ll make it work.

And, yeah, speaking of that… Monday is Halloween and his birthday! I have his Halloween costume. And I have some stickers I can trade him for the candy he’ll get trick or treating. And I have an undecorated hat box for a birthday cake, but can’t quite put my finger on how to decorate it this year. And some favors to go inside the box that may or may not correlate to the theme.

And I have a birthday video that I was supposed to get in the mail no later than today… except I didn’t.

Because on top of all of this, Brian was up sick all last night.. with a stomach bug. And today he has a fever. And that viral combination is a Short Gut family’s least favorite as it can mean bit gut complications and an admission if a fever appears. I was sick this morning, too, but it passed quickly, at least most of it. But my poor husband is miserable.

And I’m just praying Patrick doesn’t catch it. Because, if he does, then my attempts to plan for his birthday will have to be relocated to the hospital. Of course, maybe he’s already got it and that would explain his slow motility and crazy afternoon behavior this week. Or maybe it’s nothing. It needs to be nothing. Because Patrick deserves another birthday at home.. even if I didn’t plan a party.

But just in case, I’d better come up with a plan for and finish the cake tomorrow.

And I need to schedule 2 doctor’s appointments. And fill a prescription or two. And arrange to have my car fixed. And do my visiting teaching.

Can you see why I can’t focus? And why tonight it’s hard to sleep?

But I’d better sleep.

Patrick gets up at 6 a.m. That will be great for school. It’s not so great now.

I have stories of our funner adventures last week. However, before the impressions of this week leave me, I want to get them written down.

Monday afternoon Seattle Children’s gave me the go-ahead to reactivate Patrick on the tranplant list. All they needed was Patrick’s height and weight. So, Tuesday I took him up to the hospital to get him weighed and measured and then brought him home for a nap.

We’d been home for half an hour when Patrick woke up just sobbing. My first thought was that his stomach was hurting, but draining his belly didn’t help, nor did changing his diaper.

Finally, his temperature started to rise slowly and I started to think infection, either in his central line as a complication from the surgery. After about an hour, his fever hit 101.5 and Patrick was inconsolable. So, off to the E.R. we went.

Patrick was so hysterical, and with his history of high, high fevers causing chills and convulsions – I didn’t think I could drive him in as he was. So I gave him some ibuprofen while I packed the essentials. By the time we got to the car and I told him we were going to the hospital, he was settled down.

Still, even with ibuprofen in his system, he was running a fever of 101.4 when they checked it in triage. They gave him some Tylenol, too, and showed us to a room.

The E.R. was crazy busy this time. The doctor and nurse came in right away and soon they’d drawn blood cultures and some other tests to look for infection. Then, in super slow E.R. time we waited for lab results and for a consulation from surgery. Surgery recommended x-rays, which showed that there were no problems with Patrick’s belly.

And then, at last, with all those tests done, 3 hours later the doctor came to say that all of the immediate results didn’t show anything wrong, except for a low white blood cell count, which sometimes comes with a virus. Well, that and his heart rate was really high and he needed two fever reducers to keep his temperature down.

They decided to give Patrick a dose of ceftriaxone, a broad spectrum antibiotic that isn’t as strong as he usually gets for line infection, but that lasts 24 hours. (His heart rate immediately improved.) And then, they sent us home with instructions to follow up with Patrick’s normal GI first thing in the morning.

I didn’t really feel like a virus was a good explanation, but the doctor seemed pretty sure of the plan and it didn’t seem like we were getting much further were we were. At 5 hours after we arrived in the E.R. with a fever, they sent us home.. for the first time ever.

We put Patrick right to bed, but stayed up getting ready to go back to the hospital if he got sick again. Brian cleaned up the kitchen and worked. I did laundry and packed bags.

The phone rang the next morning at 5:50 a.m.

Patrick’s cultures had turned positive very quickly. And, although they can’t tell the species of the bacteria immediately, they could tell from the shape that the bacteria were gram-negative rods, the shape of some of the most dangerous and drug-resistant bacteria. They told us to come back right away.

So, we packed our bags and less than 12 hours after we left the hospital, we were back.

Still, he wasn’t as sick. His fevers were only low-grade by morning, even as the medicines for them wore off.

Over the next several hours they unclotted a line, drew blood cultures, and gave Patrick three very heavy-duty antibiotics.

And all the time I was just wondering if we’d put Patrick at greater risk by taking him home for the night. We’d certainly rested better, but I was afraid that being 12 hours later in starting the more aggressive treatment might mean that Patrick was really at risk.

Finally, we made it to a room and things began to calm down. We spent actually a very quiet couple of days. Patrick slept well the first night and just continued to gradually get better. It seemed the worst had passed in the first night.

This morning, Patrick’s blood cultures had been negative for 48 hours. They also finally were able to identify the bacteria. It was a strain of Klebseilla, a very dangerous and drug resistent bacteria. It was resistent to all of the antibiotics that are typically used to treat line infections.

However, it was sensitive to the one less typical antibiotic given the very first night in the hospital. That unconventional treatment plan was exactly what Patrick needed.

I’m sharing this story because it illustrates an important truth.

Heavenly Father knows the details – even the most microscopic ones. He is in charge. And He can inspire and guide doctors, nurses, and parents to do what’s right. He certainly was watching out for our little boy this week. The fact is that the ER doctor felt impressed to recommend an unconventional plan. The other doctors on call accepted that plan, even though it was out of the ordinary.  And we were given us peace of mind to trust the doctors and ourselves. That all of that was what was best for Patrick is surely no coincidence.

The result? One of the calmest line infection hospital stays we have ever experienced. Oh – and his transplant listing will be reactivated on Monday once the blood tests have had 3 full days to be finalized.

Our Heavenly Father really does love and watch over every important detail.

“Are not two sparrows sold for a farthing? and one of them shall not fall on the ground without your Father.

“But the very hairs of your head are all numbered.

“Fear ye not, therefore, ye are of more value than many sparrows.” Matthew 10:29-31