Today was a relatively quiet day. Patrick slept pretty well on his own. They gave him some pain meds (first post surgery) early this morning. When we go to his room, he was more alert than we have seen him post surgery. When he realized we were there, he asked Emily to get into bed with him to cuddle, when she did, he snuggled down and took a nap. When he woke up he asked that we put his new birthday shoes on, which we did. He has been wearing shoes all day.
We spent most of the day trying to get Patrick to understand that he really is hurting, and that it was ok to say that he he was in pain. We have gone up on pain meds, but we are good with that.
This morning a physical therapist visited and wondered if we would like to get him up and standing a bit, we thought would be a good idea, but he was sleeping at the time. This afternoon after we changed dressings, and got all the medical necessities done we asked that they call PT and see if they were availiable. PT arrived and decided that we needed a better recliner, and moved things around. Then she said ok, we’ll get him out of bed and have him walk to Mom, which is a bit more than we had planned. We got him out of bed, and his feet didn’t really work, but we helped him take the 5 or so steps to mom. We got him in Emily’s lap, and he said “ouch”. Tells us that we pushed him a bit. He has spent until now in Emily’s lap mostly sleeping.
This morning during rounds (when the whole team goes from room to room to discuss the plan for the day) the surgeon that performed the transplant declared that Patrick needed a room with a window. Patrick was having a hard time knowing if it was day or night because there was no window in his room. This afternoon, right before PT came I asked about it, and they said they had a room ready we just needed to make the move. After PT was finished, we made the move to a slightly smaller room, but it has large windows (with a view of another wing of the hospital). When Patrick has been awake this afternoon he just looked out the window.
Things are fairly calm here. They have been pumping Patrick full of fluids (this keeps all the blood vessels open, and blood flowing), which has him quite puffy (swollen). All in all he is doing well remembering that is 48 hours post major surgery.
I’ve had the thought that I should answer questions that some of you might be wondering. If you have more questions please feel free to ask, we are all in this together.
First what do we know about the donor? The answer is pretty much nothing. I got out of the surgeon that they weren’t in the hospital. We have been told that sometime in the future we can try to get information, but that is up to the donors family.
How long will Patrick be in Omaha? That is a hard question to answer. We have been told that the absolute best case scenario is 6 months, but plan on somewhere around a year. I’ll be back and forth a bit, but Emily and Patrick will be in Omaha. I’ll come back to Salt Lake this week to pack and finish getting the house ready, and then I’ll drive back so we can have a car in Omaha.
One last note – Patrick will be immunosuppressed to some degree for the rest of his life. This will mean that for a time (probably even after he gets back to Salt Lake) he won’t be able to be in crowds, including church or school. This will mean that our social boy will be kept away, but that is the price to pay for getting these fancy new organs.
Thanks to everyone for the love and support. We really appreciate all the offers of help.
Emily’s blog from last night left us in the waiting room. Around 11PM I looked up at the status board in the waiting room and all the other procedures had finished, just Patrick on the board in OR 3. About 11:45 we got a call saying that they were done and the surgeon would meet us in the PICU lounge. So we packed our stuff and headed back to the PICU.
We got to the PICU lounge and watched a kid try to climb the walls. We were pretty sure he had family on the floor, and he wasn’t allowed to be in the room, so he was stuck in the waiting room. I then realized that he probably didn’t get to participate in any of the Halloween fun that had been happening outside the hospital that night. I couldn’t get to unhappy with him for trying to entertain himself.
Dr. Grant came and sat down with us. She said everything went well. He was able to keep his G-Tube, and his belly button. G-Tubes are often removed because they remove parts of the stomach to try to make food pass better. And belly buttons are often in the way of the incision, however usually if you tell the surgeon that the belly button is original and it wasn’t created by some other surgeon, they do their best to keep it around. She mentioned that she removed his spleen and gallbladder partially to make room for the new organs, and partially because they have potential to cause problems down the road.
Dr. Grant was able to completely close his incision. She mentioned that the likelihood that they will have to go back in and clean things out is about 50% so she only stapled him closed.
We both looked at each other and knew that we were all dead tired, so we agreed that we would chat more in the morning.
We then watched them wheel Patrick by with multiple people from the team surrounding him. They had told us that we needed to wait before we could come back, but no one really told us how long. There is a lot to get done when any patient comes out of surgery, not to mention one like this, so they prefer not to have parents around getting in the way and asking questions for a bit, which to us is completely understandable. Some told us to wait an hour, some said that they would call us when they were ready (that never happens). So we sat there, half awake. Finally I decided that I would go ask the receptionist to call back and see if we could go back and kiss him goodnight and head back to our room to get some sleep. They agreed. When we got back to his room we were greeted by the main PICU doc with many questions. Guess we didn’t need to wait that long.
We answered the docs questions, and said hi to the team that would be taking care of him that night. They mentioned that they would be trying to extubate him in a few hours which caught us off guard. We asked that they call us if they did, they agreed. We wandered back to our room which is about a 5 minute walk back.
We both got ready for bed quickly, and were asleep as fast as we could.
We slept pretty well. We got notification of a voicemail on our home phone, so we listened to it, and it was the nurse asking us to call because she had a few questions. So we got ready for the day and headed up to his room.
Patrick was still pretty out of it. He would open his eyes just a little bit look around, and fall asleep. Which is what he did most of the day.
In the early evening we were doing what we could to try to get him to fully wake up and open his eyes. I had walked to a grocery store and among the things I picked up was chap stick. Understand that Patrick obsesses over chapstick, when he has some it is like his little friend, he has to have it everywhere. We offered him a stick of chapstick, and he immediately wanted it, wouldn’t open his eyes but wanted to hold it. His hands weren’t really coordinated enough to hold the chapstick though. He fiddled with the chapstick for a bit, and we asked him if he wanted to put some on Emily’s lips. He nodded, so Emily put the chapstick in his hand and bent down so he could reach her lips. The nurse was out of the room when this happened. As the nurse came back in the room, I heard another nurse comment to her “He is putting chapstick on his mom, I think he is awake enough to come off the vent”. So the nurse went and got the doc, who gave the go ahead.
They turned off the vent and took the breathing tube out (extubated) him. He started to try to talk, and had a croaky little voice, but at least we could attempt to communicate with him.
They put him on oxygen using a nasal cannula. He doesn’t like things in his nose, so he made every attempt to pull out the cannula.
Because he was off the vent, we could ask to hold him. The nurse happily agreed, and we started getting things ready so Emily could hold him. This was a bit of a process, with IV lines, monitors and other tubes attached it takes a bit to move him. But we did fairly easily. He is much bigger since the last time Emily held him in the PICU. But they were both happy to be in the situation.
The rest of the evening was spent with Emily hold Patrick trying to keep his hands away from the oxygen cannula. I did what I could to keep them both comfortable. Patrick got a little more voice back, but it is still not what it should be, but that will come with time. He is still quite out of it. He hasn’t had any pain meds or sedation since this morning, but he is not really complaining about pain. He is a great little trooper.
As I finish this blog Emily is already asleep. It is amazing how tired we are.
Thanks again for all the thoughts and prayers. Tomorrow is the sabbath for most please join us in thanking our kind Heavenly Father for this amazing blessing, and asking a blessing of comfort on the family wherever, whoever they are for making the choice to help so many other families at such a hard time.
Finally mommy got to hold Patrick.
Patrick wanted Emily’s glasses. We just happened to have some glasses from trick or treating the day before.
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
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.
The Life Flight and ambulance teams
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.
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
**Disclaimer: I know you all want to read about our much bigger news. However, I had this post all but written before I got busy with Halloween and birthday planning last week. So, I figured I might as well finish it up and hit post. I promise I am following tonight with other news, too.
Our family did something that, for us, was completely upside down last week. I went on a trip. And I left Patrick home with his Dad. I recognize that this is not unusual in the world we live in. However, it is incredibly unusual for the primary caregiver of a home infusion patient to travel without them is very unusual.
Let’s start by saying that we survived. In fact, I think it was good for all of us.
A few months ago, I was invited to attend a research panel on the subject of lost Central Line Access. This came through a doctor who I had e-mailed a few times because of my support group and later because of the troubles we have had in placing a line in Patrick.
At first, the idea seemed a bit crazy. But the more I thought about it, the more important it sounded. Here a group of experts was gathering to help try to figure out how to research and solve the exact problem that is putting my son’s life in jeopardy. Why wouldn’t I take the chance to go meet them and contribute to the discussion.
Well, why, except that we’d have to pay my way and have Brian take time off to fill in with me while I was away. As we discussed it, we decided it was a really good idea for me to try to go. (Brian also thought the break would be good for me.)
So, last Sunday I snuck out of church early and headed to the airport. I got picked for expedited screening at the airport and made it to my gate in under 30 minutes. Then I looked around and thought “Well, how what am I supposed to do with myself?” Remember that usually when I fly, we spend something around half an hour in security alone, and then we have to repack bags, change a diaper, gate check our stroller, and make arrangements for early boarding. Oh, entertain a very active child while keeping his IV tubing safe.
That Sunday was one of the longest and quietest in my memory. I read books, watched movies, played video games, sent e-mails, checked on Facebook, worked on a birthday video and still had time to spare. I finally made it to my room, called home, and then went to bed a little after midnight.
Morning seemed to come too early, but without anyone else to get ready, I was still dressed and ready with time to kill.
The panel itself was amazing. I tried taking notes, decided writing was too slow, switched to a computer and filled 12 pages. I learned so much about what might cause patients to lose central line access. I am itching for this panel to bring forth fruit in the form of better understanding of how to keep patients from losing central line access quickly the way that Patrick did. I can’t go into details about the research plan that was decided upon.. but I can say that it is a huge but simple step that could lead to so much better understanding, and with better understanding comes better care.
It was also an amazing experience to be in a room filled with these brilliant medical minds. I got to sit with and get to know better many of the people responsible for designing and manufacturing central lines. I came home with a stack of business cards and am already working on hopefully becoming a little bit more of a patient advocate in this area.
And then, when the conference ended, I took a cab into Washington D.C. I spent the evening and morning playing tourist. (Only getting myself lost a couple of times and never irreversibly) before time to come home.
On the flight home, I sat next to a talkative man who had been all over the world. We compared travels and experiences and opinions. When we landed, another man asked me what my career was that allowed me to be so well traveled. When I told him I was a stay at home mom of a special needs child his jaw about hit the floor. For some reason, that gave me a bit of an ego boost. I think I sometimes feel like I disappear a bit in this important but unlauded role.
Being away from Patrick and Brian was an eye opening experience. I think it was for them as well. I think we all like our roles. (Though, I’ll admit, it was hard to come back home and dive right in.) I think we can go several more years before sending Mom away on another big trip. But it was really fun to stretch my wings and remember what it’s like to be just me for a while.
I loved reading Brian’s retelling of the events of our wish trip. I’m so glad he was able to capture those memories and share them with you.
It is very strange to come home and be right back to normal life. Life where things are too busy to spend time telling the stories of the Wish Trip that I wish I had time to tell. I’m looking forward to our star-raising party for just that opportunity. But for now, I’m gonna grab a moment and tell you what I wish I could tell you face-to-face.
I wish I could tell you how different it was to travel with everything planned out and taken care of for us. We travel a lot. But this time, someone else made sure that we had what we needed, that we knew were we were going, that we always had a chance to be fed. Give Kids the World does exactly what it’s name says. But what the name doesn’t say is that they wrap up tired, worn-down parents in their arms and do all they can to lighten their load and make them feel special, too.
And they give you the best gift in the world in giving you a chance to witness joy on the face of your child over and over again. That gift is so precious, especially to parents who have seen their children’s faces filled with pain and worry and fear many more times than is fair to any child.
Every night, after giving Patrick his melatonin and tucking him into bed, I’d lay next to him while he fell asleep. Every day, he’d relive the excitement of the day. We’d relive rides and retell the conversations had with the characters we met. One very special evening, after meeting Spiderman, Patrick and I had a good 20 minute heart-to-heart about what superpowers are and what amazing thing each superhero can do. Describing “web-slinging” to Patrick and seeing him overflowing with excitement at the idea… Yes, that is one of the precious moments I hope I never forget.
I could tell you how amazing it was to receive the same magic treatment at each theme park, too. We didn’t go in assuming anything was owed to us. A quick jump to the front of the lines seemed like more than enough special treatment. But most places we went, they went above and beyond that. We were told not to expect to skip lines for characters, and yet when Patrick wanted nothing more than to meet Donald our first day in the Magic Kingdom, there were the Disney Castmembers showing us through the back entrance right to Patrick’s favorite character. Or the morning we decided to pop in and see if there were any cancelled reservations at the month-long-wait-list Beast’s Castle restaurant and they handed us a piece of paper and told us to go right in.. At SeaWorld we were told we’d need to buy a tray of fish for me, but when we tried to do so we were informed that we were their “guests” today and not only did we get that extra tray of fish, but a trainer who commanded the dolphin to jump right up so Patrick could touch it. And in Universal Studios they were determined to add to our experience. Not only did we get to turn around and ride the same ride again when Patrick wanted more, and were given special meet and greet opportunities after the animal show… But if someone met us and didn’t know anything more they could do for us, they’d make sure to give us a hint about some way to sneak in a little more.. like where to sit on the parade route for an uncrowded extra-long show by the cast of Dora.
And speaking of Dora the Explorer… in order to meet both Captain America and Dora and Boots, we virtually ran in our parkhopping and, if the Fitbit was right, covered a couple of miles in that hour. But it was well worth it to see the look on Patrick’s face when Boots walked out in front of him. And to see him flexing his muscles with his favorite superhero, too? Yeah, sometimes we parents do crazy things for our kids.
Like spending every day for a week out walking miles (about 10 a day) in the crazy mix of hot humidity and afternoon thunderstorms that is Florida’s daily weather. I don’t think a Utahn can properly prepare themselves for that kind of humidity. But, why didn’t anyone warn me that we’d need ponchos? And a game plan for when lightning closed everything. I don’t see myself moving to Florida anytime soon.
We were amazed that Patrick stayed healthy. Our second day, we were afraid that wasn’t going to hold. He had a cold when we left our house and as we went to lunch at Universal Studios, he got really grumpy and started rubbing his ears. We were contemplating which nurses we could call back home and whether or not the first aid station would be able to help him. Thankfully, after his nap, his ear seemed better. He stayed healthy. I caught his cold, instead.
Brian didn’t tell you much about the last days of our trip.
We left Give Kids the World on Saturday morning. Brian drove to the airport to trade in our rental car. (Make a Wish only rented our car for the length of our wish trip, so we needed a different car for the days that we extended to visit family.) Meanwhile, Patrick and I stayed behind to pack up the room and give Patrick one last chance to play on the Candyland playground.
Leaving the village was bittersweet. We visited to see Patrick’s star on the ceiling of the castle and snuck into the Amberville station (train station/arcade) to play with the remote control boats before leaving. (When Brian first saw them, he said it’d always been a dream to play with something like them. Moms and dads can have wishes granted too, right?) Give Kids the World will always hold a special spot in my heart. I think we’ll spend our lives looking for ways to give back.
It was so nice to go spend some time with Brian’s aunt and uncle. We were exhausted after a week in amusements parks. So to go and just sit, visit, play with toys, watch Women’s Conference on TV (The Church of Jesus Christ of Latter Day Saint’s boasts the largest women’s organization and the largest conference for women in the world), and just rest for a few days …that was heaven.
Sunday, we slept in, wore our pajamas till well past breakfast, and watched Dora the Explorer. Then we took a nap, went to church, and in the evening all of Brian’s cousins from the Florida area came for dinner.
Dinner was wonderful chaos with kids everywhere and food overflowing. Brian’s cousin taught Patrick to play duck-duck-goose. He thought this was hilarious, except that instead of running for his spot in the circle, he’d just yell “Goose!” and run away! I couldn’t help wishing that this family didn’t live so far away. He was just so at home with them.
Monday morning, we packed up once more. Patrick’s gift haul filled an entire large duffle bag by itself. We put on our matching Minion t-shirts and then went to Silver Springs for a glass-bottomed boat tour. It was a lot of fun, even if we didn’t see any gators or monkeys. Patrick, however, didn’t know what to do when that was the only ride planned for the day.
We drove back to Orlando and grabbed lunch at Giordano’s Pizza.. a favorite restaurant of mine from my days in Chicago and not found anywhere outside Illinois.. except in Orlando. Mmm. Deep dish pizza!
It was starting to rain again as we arrived at the airport. We thought we were in the clear when they let us board the plane, but then lightning started again. We waited an hour before finally being able to take off. Amazingly, Patrick handled this pretty well. Thank goodness for the tablet.
It was late when we made it home. The air had that perfect Utah fall chill in it. Thank goodness for that. It helped ease the transition back home. Because face it, as good as home is.. nothing compares to a wish trip. We were glad to be back to normal, but very, very sorry to see it go. This is the kind of experience that just changes you. You want to tell everyone about it.. but there just isn’t time to put it all in words.
Patrick talked about nothing but his trip for most of the next week. At least, until his favorite friend at school fell and had to get stitches in her head. His head’s now full of friends and school, which is also wonderful. But we talk about his trip still a little every day.
Here are some pictures taken of us by Give Kids the World and Disney.
This picture was taken as we arrived in the village. Our villa and rental car are in the background.
Mickey came to the visit our first day in the Village. Patrick was a little star struck.
The family with Mickey.
Goofy signed Patrick’s stuffed Mickey. Patrick loves names and he loves Goofy, so that was about the coolest thing he could have done.
Arriving in the park. Patrick’s not looking too happy because the with the ferry ride and long security lines, it had taken us over an hour to get into the Magic Kingdom.
Meeting Minnie. After this day, I became “Minnie” to Patrick.
After meeting Mickey and Goofy in the village, Patrick’s first wish in the Magic Kingdom was to meet Donald. We were surprised when a cast member snuck us in the back for some time with Patrick’s favorite character.
Meeting Daisy
Tigger and Pooh were headed off shift when the cast members snuck us in.
In the picture, Patrick is asking Pooh where his central line is.
Brians’ cousin and her little ones joined us for this day in the park.
It took a lot of coaxing to get Patrick to come for this picture. He just wanted to look at Mater and McQueen’s wheels and doors.
This Mickey Mouse could talk. Here, he asked Patrick to fly with him.
Waiting for Mickey
Patrick loved dancing with Mickey so much that getting this still shot was kind of a feat.
Notice how soaking wet we are. We got caught in a downpour right before and ducked in to meet Mickey to get out of the rain.
We visited Tinkerbell because it was still raining and she was in the same building as Mickey.
Visiting Santa on Christmas at the Village
We were so excited when Pluto showed up in the village, since we couldn’t find him in any park.
Horseback riding. The helmet was a touch big.
Patrick still can’t stop talking about Mayor Clayton. (Notice: a few days in Patrick starting saying “cheese” for the camera and running away. He was so sick of being photographed.)
Our favorite magic picture
Mama and Papa Bear – volunteers in the village. Patrick really fell in love with them and insisted on saying goodbye before we left.
Let’s start by saying how happy I am that my wonderful husband was willing to blog about Patrick’s Make-a-Wish trip. (Vacations usually require so much time that I’m helping Patrick to sleep that I don’t get a lot of in-room type that I could type.. and besides, it’s nice to hear Dad’s perspective.)
But – this is a big, busy time for Patrick so I am going to jump in and blog, too, about some of the other important things that have been happening in our lives. One of the biggest of which is… Kindergarten.
Can you believe that? Patrick is in Kindergarten! We NEVER imagined or dreamed this when we adopted him, when he was in and out of the hospital all his first year, when his heart stopped, when he started to lose central line access. Age 5 wasn’t in our plans.
For 3 years, I have driven Patrick to school and lined up next to those great big Kindergarteners who lined up without their parents and who talked and played together. I’ve watched them play on the shared playground. I’ve watched the teachers come to lead them into the school and heard them chant, “Eyes forward! Feet forward! Hands to yourself, and voices OFF!” then fold their arms and file into class.
And until the end of last fall, I didn’t imagine Patrick among them.
And then, when it started to dawn on me that that’s where he was headed, I panicked. And I went on a crazy rampage to get him help because learning to read and write was so far out of the realm of what I imagined Patrick doing that I was afraid he was going to become thoroughly discouraged and give up.
I mean – do you remember the year he had last year in preschool? From the moment the special education teacher came out to ask me what could possibly have gone wrong in Patrick’s life to make him start acting out in class when he’d always done well before, I’ve been struggling to help him rediscover his confidence in school.
And yet, the ball was rolling and Patrick was headed into Kindergarten, whether I was ready or not. Last fall, we had a “kindergarten transition meeting” where we met with the nurse, Patrick’s preschool team and the upcoming kindergarten team to tell them all that they needed to know about Patrick’s needs. And it took an hour and the resource teacher, Ms. Kerkman, seemed to grow increasingly wide eyed and worried and grumpy sounding as the meeting went on. But, in the end, they promised him placement in a typical classroom with lots of help, including a one-on-one aide.
And then, August rolled around and we hadn’t heard any more and I started to worry and sent of an e-mail reminding the principal and anyone else I could cc what we’d been promised.
And you know what? They followed through! I got a call a couple of weeks before school started inviting me to come in and meet the teacher and Patrick’s new aide and the rest of the team who’d be caring for Patrick.
It came on the heels of the trip to Omaha (which I promise gets a blog post soon) and so I made a mad scramble to pull useful information together. The first meeting was to go over needs again and I drafted a new “About Me” document. I was very proud that I kept it to 5 pages. About me is found here, if you want to read it.
That meeting was good, but also frustrating, as the hour I was given didn’t even let me scratch the surface of what I thought they should know that would help him. But I reminded myself that there was a reason I’d written it all down. And we went on.
2 days later, we came back again, this time to meet Patrick’s aide and give her specific training on what he needed. They didn’t give me a location for the meeting, and so we got a late start. Again, there was barely time to scratch the surface. I had time to teach how to take care of medical needs, but nothing about behavior or sensory processing techniques before Ms. Kerkman came in and declared it time to go home.
Patrick and his class headed into an assembly. Ms. Kim, his aide, is helping him inside.
And then, feeling completely unprepared, before we knew it, it was the first day of school.
Patrick was so excited! Dad came along to drop him off. How could he possibly miss such a big day? We waited, playing on the playground. Then the teachers came and taught the kids how to line up. I greeted Patrick’s aide and asked if she had any questions. Then away they went. Patrick came out at the end of the day beaming. I picked up Jimmy John’s and took him to the park so he could unwind and we could recap the day. He was so happy.
In his backpack that night was a folder of homework. And, as I looked through it, I was amazed.. He could DO all of this! It was on his level. Sure, it took a summer of hard work in Mommy School to get him to the point where it was possible, but even the reading and writing stuff? He could DO it!
The next day, I was invited to school. The goal: teach Patrick’s classmates about him. So I pulled together some pictures on my tablet and brought along Patrick’s little mini-me doll named Tubes.
The conversation went kind of like this. I showed the kids a picture of a group of kids and talked about how we are all different. Then, I showed the kids a picture of a kid wearing glasses and asked what they were for. (To help you see if your eyes don’t work right.) Then braces. (To help your teeth if they’re crooked.) Then a wheelchair. (To help you get around if your legs can’t walk.) We’re not sad about these things because they help us. Everyone is different and we all need different help.
Then I showed them a picture of a belly and we talked about what bellies do. They turn food into energy so you can play and grow. And if your belly didn’t work right? You wouldn’t be able to grow and play. So what can help? I showed them Tubes. I told them that Patrick needs to get his food right in his blood, since his belly doesn’t work. (Them:”Ew! Blood!!”.. Me: “Wait. Is blood gross? What is blood for?” One little boy: “It keeps us alive.” Me: “Right. Because it carries our energy from food.” Them: “Oh!”) We talked about what’s inside the backpack and how to keep the tubes safe. (Mainly, don’t play jumprope in them.) I told them to be careful they don’t get pulled because they go into his body. (At that moment, Patrick got up and walked away, stretching his tubes and the kids all gasped. So, I could explain that he knows how to not hurt his own tubes.)
Then I explained a little about food allergies and how they hide in foods that look safe. Then I told them about the brace he sometimes wear on his leg and how that doesn’t mean he’s hurt. (Which led into a 2 minute tangent about all the owies they have ever had.)
I wrapped up by telling them that Patrick has spent a lot of time in hospitals because he gets sick easy. I explained that meant he hadn’t had as much time as them to learn other things like talking and writing and rules for playing so he might seem to not know how to do those things, but that he was learning. I told them how excited he was to be as school with them and how much he wanted to make friends. This was met by a chorus of “I’ll be his friend,” and “Can he be friends with me?”
And you know what? Because kids accept difference so much better than grown-ups, they’ve kept their word. Patrick has friends. He is greeted by name and with hugs when he comes to school. He is happy and accepted there. Which is the best thing a mom could ask for.
Things were rolling along better than I could have ever dreamed. Patrick was actually making friends. We were getting a homework routine down, and would you believe it, after just a couple of weeks, Patrick’s reading sight words and tracing some numbers.
Sometimes when we’re exceptionally late or exceptionally early, we stop for breakfast on the way to school. A favorite is McDonald’s pancakes.
I’d requested a meeting with the district adaptive technology team. These are the people in charge of making “accommodations” for kids who have trouble with written or spoken language. With Patrick’s fine motor skills being very delayed, I’ve been worried that he might get frustrated with the task of writing or spelling. There were 8 people in the meeting, which was much more than I expected. Occupational and speech therapists, teachers, and me.
But the meeting went well. In fact, the meeting went wonderfully. Patrick’s teacher gushed about how much she loved him in her class and then told us that Patrick is about on level with his peers right now. I’ve never left a meeting so happy. We decided that this team will follow him throughout school in case writing becomes an obstacle down the road. And I knew Patrick was in the best of hands with a teacher who loved him and only saw potential in him.
And then, the next week, I went to pick Patrick up from school and one of the little girls in Patrick’s class ran right up to me and said, “Ms. Gough is going to go away and we will have a new teacher!” Then she bee-bopped away while I stood there wondering if I’d heard correctly.
But yes, the note in Patrick’s backpack confirmed it. The school had fewer kindergarteners enroll than they had planned on and the district decided that they had to cut one of their afternoon classes. Patrick goes to school in the morning, but since losing the afternoon class meant his teacher would otherwise be going part-time, Patrick was losing his teacher. Her last day would be the next day and then they’d have the substitute until they could hire someone new.
Yeah, I shed a few tears. And I played out several horrible scenarios in my head over the next few days. And I considered writing letters or protesting or pulling Patrick out of school. Especially when the next week I heard that they had no applicants and no long-term substitute lined up. But then I reminded myself that I’ve learned that fighting against the system and getting emotional don’t solve problems.
Thankfully, we had somewhere else to go for the week. Patrick’s make-a-wish trip meant that he could miss some time with a substitute. And I could figure out where to spend my momma bear energy when we got back.
But, a few days into our trip I got a voicemail saying that they’d hired a teacher and inviting us to a parent/teacher conference. Patrick’s new teacher, Mrs. Hunt, started the day we returned from Orlando. We sat down with her yesterday to discuss his needs. After a few minutes of me explaining medical terms for her, she stopped me and told me that she’d recently worked in the infant unit at Primary Children’s Hospital and, therefore, I didn’t need to translate for her. Not only did that make the meeting a whole lot faster and smoother, but it gave me some peace of mind as well.
Today was Patrick’s first day back to school since our trip and he seems to have done ok despite the interruption in routine and the new teacher. We’ll see what lies ahead.
Overall, though, this start to Kindergarten has gone much better than we’d have imagined. Patrick’s classmates were so excited to see him come back today. They wanted to hear all about his trip. One favorite friend immediately held onto his backpack handle and walked with him, comparing Disney experiences.
Patrick’s aide , Ms. Kim, has done such a good job taking care of him. And that is translating to him doing better in class and with his peers. She and Ms. Gough have built a great foundation for him to start with and I hope that he’ll continue to do well with this new teacher, as well.
But I still step back a bit in awe sometimes. It’s October. Patrick’s in Kindergarten. He’s learning to read. What an amazing place to be in!
Today was a busy day. We had to be out of Give Kids The World (GKTW) by 11:00. That meant that we had to pack up all the stuff we brought and all the stuff that was given to him. I also needed to switch cars because our reservation for the Wish Trip ended today.
While I went to switch out cars Emily and Patrick finished packing up and then went an played on the amazing playground just down the street from our villa.
We got to the front desk to checkout at 10:55. They presented us with more treasures.
We stopped in and had one last lunch at Katie’s Kitchen (Boston Market sponsored). I kinda looked around with a heavy heart at all the love and service that goes into GKTW. I expect that someday we’ll be back at GKTW.
We then headed to Sea World. We arrived and checked out the schedules first. We headed straight to feed the dolphins. The goal was to catch the dolphin show right after that, when we entered the dolphin stadium it was nearly full, when we showed the GKTW badge and expected to be shown to special seats, the greeter looked at us like what do you want me to do? I know we are spoiled. We decided to catch some other rides, and get to the dolphin show a little earlier.
We went to ride some rides, they kept being worried about Patrick’s TPN backpack, which is attached to him. We tried to ride the kids roller coaster and were told that he couldn’t ride because of his backpack. We left the ride a little unhappy.
We went back across the park to catch the dolphin show. We got the very last handicap seat available. The show was good until they stopped the show because of lightning in the area.
We left Sea World a little unimpressed.
We headed up to my Aunt and Uncles house. We’re going to spend the next few days here.
Today we had one last day at Disney, we talked to Patrick about what he wanted to do. He could have gone to Animal Kingdom, or he could go back to Magic Kingdom and do what we did on Monday. He chose Magic Kingdom, so that is where we went.
When we finished with breakfast, Patrick was already asking for a nap. But we headed to the park. We went directly to “Be Our Guest” which is a new Beauty and the Beast restaurant, which has reservations booked months out. We just asked if there had been any cancellations, the cast member said no, but then her eyes caught the magic badge, and she sent us directly back. When we got to the gate the cast member looked at us like we were crazy, so went back to the front and said we weren’t ready for dinner at 9:45 AM, she asked when we would like to come back, I said any time after 11. She handed us a paper with 11 o’clock written on it.
We did a few of the rides Patrick loves, we also tried the Seven Dwarves roller coaster. Patrick loves roller coasters, the Seven Dwarves was no different.
We headed back to the restaurant and got there a few minutes early. People were milling around saying that they were 2 minutes early so they needed to wait. I was afraid that we would be doing the same. But we caught the cast members eye, and she told us to go in. This was a different restaurant, you order at kiosks and they give you a “rose” (think Beauty and the Beast). You go find a seat, and grab your drinks. A while later the food magically appears on carts. The food was good.
We told Patrick he could ride a few more rides, and then he needed to rest. He happily rode a few more favorites. We gambled that the rain would hold off enough for us to run back to our villa and get Patrick some rest.
Patrick and Emily took a nap, I started to look at email I have been ignoring all week (not much on the work side).
We woke Patrick and asked if he wanted to go ride some more rides, which of course he did. So we headed back to the park.
We did a few more favorites, and then headed towards Big Thunder Mountain. And of course it started raining. We detoured to “It’s a small world” which isn’t as magical in Disney World as it is in Disneyland. When we got off the ride, the rain had mostly stopped. So we kept going towards Big Thunder Mountain. For those of you who aren’t Disney followers, Big Thunder Mountain is a big people roller coaster. Patrick has been tall enough for a bit, but we hadn’t dared take him on it, but his love for roller coasters made us think he is ready.
We go onto Big Thunder Mountain and Patrick didn’t look super excited to be there. We got off and he asked to do it again. We told him not quite yet, so we headed to the Seven Dwarves ride again. When we got off that, he asked for the “big” coaster. So we walked all the way back to Big Thunder Mountain. This time around he giggled the rest of the ride.
We had about an hour left, so Patrick named the rides he wanted to go on, the first of which being on the far side of the park, but that is ok.
We finished off the day doing what Patrick wanted. Which in our opinion is how it should be.
Tonight is the last night at Give Kids The World. I’m kinda sad to see it go. Tomorrow we will pack everything up, and go to Sea World. We will then go and spend a few days at my Aunt and Uncles north of Orlando. I’ll try to get another blog or two done while we are there.
Here are some pictures:
The Magic Kingdom
Waiting to go on the “red roller coaster”.
Patrick at lunch. Looks kinda like a selfie (I was getting drinks, so I don’t know)
(Before I start my brain has reached mush state. I apologize for the rambliness and or typos that will be in this blog, I mean more than normal.)
Today we had lunch reservations at an Italian restaurant in Epcot, so that kinda framed our day for us. Patrick had yet another rough night, he doesn’t ever sleep great when away from home, but the last two nights have been short on sleep.
We got up and got ready. My cousin was going to come and hang out with us for a while today, which meant that we needed to get out the door at the correct time. We were running behind schedule but so was she, so it all worked out.
We got to Epcot and parked right up front and wandered into the park, it was nothing like getting into the Magic Kingdom on Monday. We started out with the Nemo ride, when we finished we met my cousin and her two youngest kiddos. We wandered around the aquarium a bit. Patrick was seeking sensory input so bad that he couldn’t stand still. So we headed for another ride. We ended up on a ride about the five senses, and what imagination can do to them, it was a fun ride. Patrick wasn’t so thrilled about the beginning, but once the colors got bright he liked the ride.
When we got off it was time to head to the back of Epcot and go to lunch. We got there right on time. We were seated. I was amazed that all the staff I saw were Italian. At first I wondered if their name tags just had Italian places on it because it was in the Italian portion of Epcot, but they all spoke Italian to each other. When Emily ordered her dish, the pronounced it correctly, and that caught the waitresses attention, she asked how come she could pronounce it so well, and we admitted that we speak Italian. She switched over to Italian, which was kinda fun. Been a long time since I spoke about food though, I’m a bit rusty. The food was good, I haven’t a real arancino in a long time, these were small ones, but they were good. Patrick did ok, for the mood he was in. The chef came out and talked to us, and made sure that Patrick’s allergies were avoided, too bad he didn’t eat any of it.
When we finished there we wandered a bit more. Patrick was asking for rides. We decided to give the “Test Track” ride a go. The ride was ok, took a long time to get to the ride part. You start out by designing a concept car, which he enjoyed. Then you get pushed out into another line that didn’t ever seem to move. Patrick was doing anything he could for his sensory needs, which made him very naughty. At the end of the line were cars on a track (think Radiator Springs Racers in California Adventure), the cars go through testing, and then out onto the track which picked up speed, Patrick liked that part.
When we finished we decided that it was time to head to a different park after consulting with my cousin, we decided we would head over to Hollywood Studios.
We got there and it seemed pretty crowded. We hopped on Midway Mania (Toy Story shootem up ride), which Patrick likes, but the lines are always long. Our magic pass helped a bit wit that one.
When we got off it was tubes off time, so we took another break, and took off Patrick’s tubes. My cousing pointed out that we weren’t too far from where Lightning McQueen and Mater are. So we stopped in and met them. Patrick enjoyed meeting them. Next to them were Phineas and Ferb (my favorites), so we stopped in to meet them. We used the magic pass to meet them because the line was long. Phineas spotted us waiting, and pointed his handler at us, which made smile. The handler came to us and told us that they were going to take a break, but we would be next, and had us stand in the shade (thanks nice handler, it was a hot day). When they came back out they came right to us, and got hugs from all the kids, it was a great encounter.
We thought that Patrick would enjoy a stunt car show – what car obsessed kid wouldn’t like that? So we headed in and got great seats. The show was a little too slow, and Patrick just wasn’t having it. We decided that it was time to be done. So we headed out, and said goodbye to my cousin.
We came back to our villa, and all took a rest. Emily spent some time getting Patrick’s tubes (TPN) ready to go back on. Tonight was Christmas at GKTW so we needed to be up and have dinner on time. We woke Patrick and headed to dinner.
Patrick is really good at not eating anything until we are finished with our food, and then he started to nibble on things. Tonight was no exception. We finished our food, and he kept asking for mashed potatoes. The beauty of GKTW is they prepare food in the most allergy friendly way possible. Usually mashed potatoes have milk and butter in them, which are no-gos for Patrick. But here they are safe. Patrick nibbled on potatoes for 20-30 minutes. Which put us a little behind schedule but that is ok.
We headed over to meet Santa. The line was long. We did all we could to entertain Patrick, but it took some doing. Patrick met Santa, and then picked out a present. A transformer, i’m not sure he would have picked that out before yesterday.
When we finished with Santa the Christmas party was almost over, so Patrick met some of the characters at the party, and it was over.
He decided to ride the carousel. GKTW has a carousel, that runs all day long, and you can ride as many times as you want. This time around Patrick rode twice.
I was in the mood for ice cream, so we headed over to the ice cream palace (also all you can eat, open 14 hours a day). Emily noticed that they had popsicles at a party a few nights ago, so she decided to ask for one for Patrick, lucky enough they had some. Patrick would say “take a picture of me eating the popsicle” and stick the popsicle in his mouth. In my mind if that will get him to eat he can have as many pictures as he would like.
Today was a pretty good day. Thanks to my cousin Leah for driving the 90 minutes each way to hang out with us, and sorry to make you wait so much.
Tomorrow the plan is to back to the Magic Kingdom for one last Disney day. We might end up missing the Animal Kingdom park, but Patrick wants the rides in Magic Kingdom, so tomorrow we’ll make him happy.
We are almost at the end of this wishing week, we’ll be sad to leave GKTW.
Here are a few pictures from today – we didn’t take many:
Meeting Pluto – oops forgot to put that in the blog.
Meeting a plastic soldier.
In Midway Mania.
Phineas, Ferb, and the gang from today.
Patrick and a Santa statue.
Patrick says “take a picture of me eating my popsicle” so we did.
Today started off with Patrick having a rough night. I’m not sure what time he woke up, but he didn’t want to go back to sleep. When we finally let him get up, he was super tired, and quite grumpy. We got up and got him ready. We went to breakfast, but decided we would take a slow morning to see if we could get the day back on schedule.
Wednesday mornings Give Kids The World (GKTW) has horses for kids to ride. Many of the kids haven’t had the chance to ride a horse. Patrick had ridden one long ago at a fair, so it was a good experience for him. He was more interested in the buckles and straps on the sadle than actually being on a horse. At the end they gave him a hat, because he was now a cowboy. He tried to give the hat back because it was too big for him.
We came back to our villa and Emily tried to get Patrick down for a nap. That took some doing, but it worked. We all fell asleep, I set an alarm. I didn’t want to miss the day because we got a late start and got caught by rain. Patrick decided again he wasn’t really sure that he wanted to get up. We coaxed him up. It was 11:30 when we got out the door. We stopped in at a Katies Kitchen a rebranded Boston Market for some takeout lunch. Emily ate while I drove to Universal Studios.
When we got to Universal we were smart and asked about seeing characters. The Dispicable Me characters were out, so we headed that way. Patrick wasn’t really impressed. He wanted to ride a roller coaster, which is his way of saying that he is bored and wants to have fun. There was a kids zone not to far so we headed that direction. Patrick wasn’t sure he like it, but again wouldn’t tell us that. As I got off I noticed that there was no line, so we asked to ride again, and they had no problem with it. That time around Patrick giggled, and laughed through the ride.
We wandered around a bit, and decided that we would try to meet Captain America, but we needed to hurry because we wanted to try to see Sponge Bob as well. So we hustled over to the other park to see Captain America. When we got there, Captain America was no where to be found. People were waiting around for Spider Man. I stopped in to ask and the worker kinda brushed us off, and aid well he might be out later, but you never know. That kinda bugged me, so I complained a bit to him, probably shouldn’t have done that.
We got back to the other park and met Sponge Bob. And Patrick Starfish. Kinda fun to say the phrase “Patrick meet Patrick”. Patrick was excited to meet the characters.
Emily had researched last night a few things to do today. One of the things she was excited to see was a stage show about animals that performed in movies. I wasn’t sure how Patrick would do, but we were in the right place at the right time. When we arrived, an employee took to Patrick and chatted with him until it was time to go into the theatre. We got front row seats. Patrick did fairly well. The animals did great. We were told to stay seated and we would be able to meet an animal. We followed the instructions, it felt kinda funny to have them usher everyone out of the theatre. But we got to meet Marley from “Marley and Me”. A very nice gentle dog. Patrick was happy to see the dog, but more interested to play with the head trainers radio.
We got out of the show, and it had been raining, but cleared up by the time we got out. It was almost time to meet Dora (one of Patrick’s current favorites). So we wandered and found Bumble Bee the Transformer that he could have his picture taken with. Bumble Bee really wanted to interact with Patrick, but that was fairly difficult to do when you are dressed as a car.
We headed back to where Dora would be. We sat on a curb and didn’t tell Patrick who was coming. When the music started to play, Patrick started to smile, and then he spotted Dora and Boots. He was super excited. They characters danced around, and Dora had a bit of a costume malfunction in that the back of her head was coming open, and they pulled back. I was afraid that she was done, but came back just in time for Boots to join her and start taking pictures. Patrick was super excited to meet them, and see backpack. He was also excited to see Diego.
We decided to head back over to Islands of Adventure to see Captain America. We got there a little early. So we hung out where we thought they would come out. The super heros came out and Captain America wasn’t there. I was worried that he decided to take the afternoon off. But we walked to where he hangs out, and he was there! After 4 tries, we succeeded in meeting Captain America! Captain America chatted with Patrick and showed him his shield. We got a great picture with him.
We had checked off all the goals for today. So we decided that we would wander back up to Hogsmead, get some Butter Beer and take Hogwarts Express back over for the parade in Universal Studios. We had received tips on where to be to see Dora in the parade. To get to Hogsmead you have to go through Dr. Seuss land.
On the way through Dr. Seuss land we spotted the Cat in the Hat, and they pointed us in the direction of other Dr. Seuss characters. The last character we met there was The Grinch. He had a lot of fun with Patrick, including picking his nose and wiping it on Patrick, Patrick proceeded to pick his nose and wipe it on Grinch. They played for a few minutes, we were all laughing when we walked away.
Patrick saw the One Fish, Two Fish ride and declared that he wanted to get on that ride. Since we didn’t really have anything firm to do we said sure, and since I rode it with Patrick yesterday it was Emilys turn to go with him. He laughed the whole. Chances are good he’ll be talking about the fishy ride for a while.
We got to Hogsmead, and grabbed some Butter Beer, and headed for Hogwarts Express. We arrived back in Universal Studios, and went to the spot we had been told about. It took the parade a long time to get to use, so we let Patrick run a bit.
The parade arrived with all of Patrick’s favorite characters yet again. Dora and her crew stopped just down the street from us. Patrick was fascinated with them, the crew came by and high fived Patrick. One of the flowers chatted with Patrick for a long time, she let him touch her costume, Patrick loved it.
From there we hit a few more rides and decided we were done. We headed towards the car and came back to our villa. This was the latest we had been out all week. The rain stayed away pretty well, so all the rides were up and running.
The GKTW activity tonight was Village Idol, one thing that Patrick wouldn’t be into, so we ordered pizza to our villa, and had an evening in. GKTW offers a non dairy pizza, something that we haven’t seen anywhere else. Patrick actually took a few bites of his pizza which was great.
As Patrick went to sleep he talked about meeting Captain America, the fishy ride, and Dora and Boots. He seems to process the day as Emily helps him go to sleep, so we find out what he really liked at the end of the day.
On the schedule for Tomorrow is Epcot and another park (haven’t decided which). Sounds like my cousin is going to come down and spend some time with us which will be fun to have a local.
Here are some pictures from today:
Patrick riding a horse.
Two cowboys.
One fish, two fish. “the fishy ride” Quickly became one of Patrick’s favorite.
Two naughty kids picking their noses.
Two naughty boys.
Meeting Marley.
Hello Sponge Bob.
Can’t you see the look of excitement on his face while meeting Boots?
Patrick Hoopes 