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If you’re wondering why I’ve been acting a little crazy…

What an overwhelming two weeks I have had. If you’ve happened across me you may have found me forgetful, worried, tearful, distracted, jumpy, uncertain, self-consumed or any other manifestation of anxious. I live with anxiety. It’s been part of who I am for a long time. When we were undergoing fertility treatments, it kind of consumed me. Therapy helped teach me to live with it. And now? Well, it’s been a very stressful two weeks and anxiety has been thread running throughout all of it.

It is no surprise that this has been a hard stretch. I’ve been saying for a long time that my goal for August was just to survive.

Brian went to Europe (Ukraine and Poland) for work for 10 days. Wives were invited and I couldn’t go and that hit a lot harder as he got on a plane and left than it usually does when he has to travel. Also, this was one of those real long-haul trips. A long one. And a busy one so that most of our chances to talk to one another were stole little moments when one or the other of us should have been doing something else, like sleeping.  And there is no real cure for a linguist and lover of travel and culture to stay at home while her best friend sees the world without her.

It was also one of those really busy times here at home. As I mentioned in my last post, we have been working with Patrick’s allergist, GI, and dietitian to try to switch him to oral eating instead of enteral (through a g-tube) feeding. I kept a 3 day chart of Patrick’s diet and learned that he’s eating just under 1600 calories a day. The goal is 1800-2000 and therefore, a few more bites at each meal and he may just be there. The log showed that he needs to get more protein into his diet, which sounds challenging since he’s still struggling with typical meats. But I introduced him to fish while Brian was away. (Brian doesn’t like fish). And to fish sticks. And he loved them. And, out of the blue, Patrick started actually eating roast which gives me hope that if I can just get the meat tender enough, he might be able to eat it. Meanwhile, I we are supposed to be encouraging him to eat the proteins he likes like soy cheese and hummus and lunch meat. (I have taken to buying a few of those little buddig lunch meat packets and sometimes just handing one of those to him to snack on.) Knowing he’s a touch allergic to soy, I switched to sunbutter, which was received with lots of pleased “mmm” sounds.

But the mission that really turned me into a basket case this past little while has been trying to make plans for Patrick to go to school. I had the chance to talk to his classroom teacher and also to the school nurse. And the vibe I got from both was worrisome. They both seemed totally great at their jobs. And they both seemed to feel completely in over their heads with Patrick. In fact, both asked me why exactly Patrick wasn’t in the medical hub when it was obvious that he has such big medical needs.

I had long conversations and I wrote long e-mails and I did everything I could to make people talk and work behind the scenes. But I couldn’t do what was really the most needed until today.. I couldn’t meet with the school. I miscalculated. Brian offered to send me to visit one of my dearest friends, Lindy, who lives in Seattle. Her family housed us through I don’t know how many checkups at Seattle Children’s while Patrick was waiting for transplant there. And when we moved our listing to Nebraska, Seattle became too far to travel. I haven’t visited in 2 years. And so, since he was going to be away for a long time and since we didn’t swing a family vacation this year, he offered to send me out to visit.

I wasn’t sure as I was getting ready to go that this was a wise choice, this travelling alone with Patrick when my husband was gone and I had to pack and get us there on our own. It didn’t go well. The day before we left I was anxiety personified. And I went to bed wondering if I’d completely lost my mind.

Thank goodness it was a visit to a friend who helps me piece my sanity back together. It was good to catch up. And it deserves its own post. But as usual, Lindy helped me to talk and work through some of my struggles. And Patrick basked in the love of this amazing family.

And then we came back home and dived into madness again. I didn’t even get to unpack for like 36 hours, things were so busy.

Yesterday I tried to juggle back to school shopping and phone calls and e-mails with Patrick’s medical team and cleaning the house and unpacking and making quality time with my son who is about to leave me during the day. And there weren’t enough hours in the day. And Brian was going to be home in a couple of hours.

And then… Brian’s plane got delayed. And I kept working. And the flight kept getting pushed back. And I started to feel guilty because I started to wonder if my prayers for there to be enough hours in the day were resulting in airport delays. But I just kept at it and soon enough had been done. Patrick was in bed. And my amazing respite worker had come over on no notice to sit with him so that I could go bring Brian home.

And I’ve decided this post is getting too long and so I’m gonna wrap it up with just this thought because today deserves its own whole post too. But here’s the thing…

I’m recognizing that I’ve been just getting by for a very long time. Almost a year. And now that school is on the horizon, I’m trying to piece my life and sanity back together. I’ve started to go back to therapy. And I’ve started to recognize that to let go of this crushing anxiety I’ve been carrying, I have to stop just shoving it down deeper inside.

When you’re just surviving, that’s what you do. You put it down deep as far as you can so you don’t have to look at it and you just carry it with you while you move on. Like when you are at the store and they hand you a receipt and you don’t have really anywhere to put it so you tuck it into your purse. And before you know it your purse is all filled up with wadded up papers and wrappers and odds and ends of spilled things. And you just keep carrying them around because it takes effort to get things back out and look at them and figure out what to keep and what to throw out. That’s where I am. I’ve got all these things tucked down because I didn’t have anywhere to put them. And I’m hoping that I can get them back out and let some of them go.

So you might see me a little bit weaker for a while. It’s ok. That means I’m trying to work through some things. Anxiety is part of who I am. I’m pretty good at squaring my shoulders and pushing forward. But when I get a second to be myself, I’m going to need to work some things out. And it might look messy while I get through it.

Daddy in Norway

A couple of months ago, Brian came home and told me that the business associate that was visiting from Oslo had surprised him with an offer he didn’t think he could accept. Because the internet is a global enterprise, you shouldn’t be surprised (though you probably haven’t thought of it) to learn that web companies sometimes do business with other companies overseas. This particular one was holding a conference near their headquarters in Oslo, Norway. Brian was invited.

You may not know about me, because I live so deeply in the special needs mom world, that I was a student of linguistics in college. That I love other cultures. That I taught English as a Second Language. That until we became parents that we were travelling as often as occasion allowed. No. If my husband was invited to visit a new place in Europe, I wasn’t going to say no.

I did tell him that I couldn’t promise that I wouldn’t be jealous and/or that I wouldn’t have a hard time holding it together while he was away. But I did promise I would try.

So, last Tuesday as I was dealing with a fire at home, Brian hopped on a plane to Norway, with a connection in Amsterdam. He spent the first part of his week in the conference being shmoozed by the hosting company, with a little bit of touring Oslo in the meantime. Then, he headed off with the friend who’d invited him to a cabin in the Norwegian forest where he biked, boated, and even walked barefoot through a forest so moss-covered that it was as if the forest was carpeted.

I make it a policy to not stay home and sulk if I can help it. A great deal of time and energy was spent working on taking care of our little house fire.

Thank goodness reinforcements also came on time to help with that. With summer starting, the neighbor girl who is doing respite for me started. She worked 3 days last week and it was life-saving. As an added bonus, the neighbor’s 10 year old called and came over a couple of times during the week to play with Patrick. He adores her and it really helps me. Then there was the amazing friend of mine who came to my house after getting her own boys up and ready for the day to help me get Patrick and myself up and ready by 8 a.m. so that we were keeping in habit between Nebraska and the start of summer school. I swear I only showered that week because of her help.

Two other friends worked together to bring in a meal Tuesday night and that, combined with leftovers of a frozen lasagna and spaghetti I’d made Sunday, made up most of what Patrick and I ate that week. I think the most complicated other cooking I did was some vegan macaroni and cheese from a box.

I’ve become aware of a tendency between Patrick and myself to build upon each other’s negativity. If I am in a bad mood and criticize him, then he becomes more defiant and naughty, and I in turn get more strict. So I decided that, as we kicked of summer, we needed a way to encourage more positive speak. I’d read an idea of putting warm fuzzies in a jar when children are caught being good. But I didn’t have any pom poms. What I did have was a bag of rainbow colored foam popsicle sticks. Cut in half, they created a very durable, easy to handle “ticket”. Sunday night, while I was waiting for Brian to see why the internet was out, I slapped some labels on an old gelato jar and a formula can. One for me, one for him. And now, I carry a pocket full of tickets. When I catch Patrick doing something especially kind of helpful, when he obeys when he doesn’t want to, when he gets control of his temper when he is feeling out of control, etc. he gets a ticket. They easily move from my pocket to his. And once or twice a day we empty his pocket into the jar. When the jar gets full, he earns a reward. At first, I was offering kids meals. Now, we’ve opened that up to a dollar at the dollar store, too, since we are filling the jar more than once a week.

Anyway – this has helped the mood in our house. It also gave us a great excuse for an outing.

Wednesday is “library day” in our house. So, once the cable was fixed Wednesday, with Patrick’s jar full, I decided we had earned an outing. I checked out museum passes for the month of June. I thought we’d start with what had been his least favorite museum before, the Leonardo. And then we could go over and visit the city library.

Well, it turns out that the exhibits at the Leonardo have changed a bit and Patrick has grown up a lot. He is a little bit of an engineer at heart, taking after his father and grandfathers in wanting to know how things work. And he couldn’t get enough of the hands-on engineering exhibits at the Leonardo. He wasn’t as much in love with the arts side of things. But, when I thought he’d seen it all and suggested we go, he announced, “No! I love to be here!” And we went and did them all again. We arrived at 3:30. We stayed till 5. That is a long time at one thing for Patrick.

When we left the museum, I considered moving my car, since it was in 2 hour parking.. but instead let Patrick lead up up the stairs on the outside of the library. You can climb to the roof of the Salt Lake City Library by a long circular set of stairs on the outside. Of course, Patrick did. And then, after playing on the roof, we rode downstairs in the glass-walled elevators to the children’s section. Patrick was enchanted.

The children’s section has a hole fort-like reading corner. We picked out books and went to read. Then Patrick needed a diaper and I remembered my car, now 10 minutes past time to move it. We went outside with the intention of moving the car.. but getting outside reminded us both we were hungry and Patrick voted to go to dinner.

He’d chosen Arby’s for dinner and a downtown location felt just fancy enough. I knew we needed to do some grocery shopping, too, and while we were eating I remembered that the downtown Smith’s location as a fairly large allergy section that I’d never explored. So we went grocery shopping. Patrick was beat! But they had goldfish crackers on sale. (We’re using them to give him small amounts of dairy exposure to try to help reduce that allergy… plus he loves them.) And, as I went looking for vegan mayo, I discovered a new product called “Just Ranch” that happened to be on clearance. It was an entirely vegan ranch dressing. And next to it was “Just Coleslaw Dressing,” though they were out of “Just Mayo.” We picked up a few, headed to the car, and made it home, snacking on goldfish while we drove, just on time to go to get by 8.

Friday, we tried to meet some support group friends at the park. I’d picked an adaptive playground I love because I find them easier not just for wheelchairs, but also for kiddos with TPN or tube feeds in tow. Alas, we ended up there alone. Short gut means hectic schedules and I often end up planning get togethers that only I attend. But we stayed to play, anyway. We’d made up some chicken salad with the Just Coleslaw dressing and Patrick devoured it. (Yay!) Being an adaptive playground means it was full of special needs kids and their special moms. So when the phone rang and it was Patrick’s summer school teacher calling to learn about him before the next week, some sweet special moms just took him in with their own so I could talk.

Saturday, we decided to try out another museum pass. This time to the Museum of Natural History. I’d opted to spend the morning working in the yard before it got too hot. And it was crowded in the afternoon, which made it harder for Patrick to focus. But we still spent a couple of happy hours and I think he got a chance to explore and play with everything that suits his abilities.

Sunday, we attempted a little more church than usual. Patrick did really well in Sacrament meeting. He set up his toys on the floor and happily entertained himself past our goal of the first talk. It took effort me to stick to my resolution to not overload him and leave once we’d met the goal.

We went home, ate lunch, and talked to Daddy.

That afternoon, I took Patrick back for Primary. His first attempt since transplant. He was tired by then. And overwhelmed by the new place. He said the opening prayer, except he didn’t. They’d whisper ideas of things he might say in his ear, and he’s just say “no.” But he got to talk in the microphone, which made him happy.

Then, he ran wild around the room for the remainder of singing time. (Different to go observe instead of leading.) And then I took him home.

I’ll write more about Monday. Maybe tomorrow. The short version is that he started school, I started working with a district representative to talk about his 1st grade placement, and then we went and brought Daddy home from the airport. That night, I cooked my first real (not restaurant, frozen, boxes or reheated) meal in 2 weeks. And we were all ready to crash by 9.

Oh yeah.. and last week…

Blogging has been on my to do list for a couple of days. But when I sat down to write last night, I was so full of the thoughts and worries of that 48 hour period that I forgot there were other events last week that I’d meant to write about.

We had a couple of appointment last week. We finally got back in to see Patrick’s psychologist yesterday. Can I tell you how amazing she is? When Patrick’s insurance case manager called me to tell me about a new Autism clinic that she’d seen open at the University of Utah THE SAME DAY THAT SHE CALLED I was pretty speculative. Especially since we have never been big fans of the diagnosis of autism for Patrick. Spectrum diagnoses are tricky and, while time and learning have convinced me that Patrick does have struggles that fit into the definition of autism, his presentation is so atypical that I don’t feel like the diagnosis serves him well. Well, unless you are dealing with someone who really does understand autism spectrum disorders. Which the people at this clinic really do. And for all that I don’t willingly introduce Patrick as autistic, we have found the autism clinic to be a tremendous help for us. I’ve been anxious to get him back.

When Patrick met “Dr. Joo-la” and her “piggies” (guinea pigs) there was an instant connection. I could see that he clicked with her and listened to what she said to him.As icing on the cake, she also saw that with the responsibilities of being his caregiver, I wasn’t going to have a chance to go seek other help for myself. She told me in the first meeting that if we sometimes needed to spend sessions talking about and taking care of me, too, that she considered that an important part of taking care of Patrick.

This last visit, I took her up on that. First of all, she spent a lot of the session reassuring me that Patrick really HAS made great progress. I’ve said before that it doesn’t seem like he is as plagued by constant sensory seeking as he was before. She pointed that out, too. Saying he seemed more focused, more grown up. Of course, his exploding language skills are an amazing step.

She reminded me not to be overwhelmed by after-school meltdowns. Pointed out that we had the same problems last fall, too. And she helped me brainstorm ways to make coming home from school perhaps a little better.

She also reminded me not to feel guilty about not being able to do all my heart says I should be providing for Patrick. She’s been following this blog, so I know that she was aware when she told me that she knew that a lot of days, we are just still surviving the day. She encouraged me to embrace summer school as respite time for me and NOT to try to spend it doing things for him or feeling like I need to save them from problem behaviors. I really need to call and see if it’s an option for me to swim in the mornings while he’s at school. If not, at the least there is a track at the high school on the same campus and I can walk.

And then she reminded me that I need help and tried to help me work up the courage to go and tell some of the people in my support system that I’m feeling lonely and overwhelmed and could use some company, if not some help. I don’t seem to be very good at that. (Does this count?)

Anyway – we talked about some other strategies for summer, for respite, for behavior, etc. We talked about bringing him back to their social skills group. (Which I’m very pleased to have found works well this summer.) We played with the piggies and Patrick tried to trade our bird Max for one. And then we made some return appointments.

That was the happy appointment of the week. The next day, I took Patrick to his allergist and I’m afraid it didn’t go as smoothly.

I learned two important lessons. 1) Don’t schedule appointments immediately following school. Patrick needs time to unwind first. 2) Don’t go to the allergist alone.

Because of his ADHD and sensory processing disorder, Patrick doesn’t do well in new environments and Patrick’s allergist just moved to a big, beautiful new facility. I’m very excited about this because he’s no longer sharing space with a regular healthcare clinic and there’s less risk of catching a virus there. But for Patrick, new spaces have to be explored thoroughly with doors banged, containers emptied, equipment disassembled. It’s a disaster. Also, because of a lifetime of doctor’s visits, Patrick doesn’t like it when I talk to a doctor about him and will do just about anything to get me to stop.

This day was particularly bad. I’d managed to get a tired Patrick to nap the day before, but insomnia kicked in that night and he was up till 12, getting just 6 hours of sleep.

The end result is that Patrick threw all of the flashcards, snacks, magazines, and tissues on the floor. Then ended up having to sit in a chair with all other furniture moved away from him. And then he screamed for most of the rest of the appointment.

I have to give props to Patrick’s allergist, Dr. Gleich. He still smiles, talks to Patrick like Donald Duck, tells me that I have my hands full but am doing a good job being patient, and just gets us through the appointment as productively as possible. He is a very good man.

So while I tried to keep as much calm as possible, Patrick’s allergist and I tried to talk through how transplant might change the strategy for his allergies. Obviously, the ability and need to eat are a significant step. And I wanted to talk about how to safely explore what he can have.. and just how safe it is to be dabbling in some of Patrick’s milder allergies while he is on immune suppressants that are making it so he doesn’t have many reactions.

I wish Patrick had been feeling better so we could have covered more ground. We reviewed Patrick’s last test results. The gist of them is that Patrick’s test results show him allergic to a lot of foods that he tolerates, at least to some degree. We still need to stay far away from cashews, pistachios, peanuts, and unbaked eggs with caution for other foods we’ve seen cause a reaction. He said to keep encouraging Patrick to eat eggs as an ingredient in baked foods as that mild exposure is believed to help kids outgrow allergies. He gave blessing to my efforts in allowing Patrick traces of milk, in extreme moderation. (Goldfish crackers, for example.) He actually was surprised that I was still being cautious about butter and regular cheese, but I pointed out that we see reactions to those foods.

He also took care to warn me of just how serious it is that Patrick’s spleen was removed, leaving him without a major defense against illness. He wanted me to be sure that, for any fever, I know I need to go straight to Primary Children’s. Some things don’t change.

And then, because we weren’t getting much further with Patrick screaming in the corner, we decided to not try additional testing that day. Instead, he asked me to bring Patrick back in July or August for repeat blood and scratch testing. In the meantime, we are supposed to explore and even push a little bit, with epi pen and benadryl nearby, and keep a log of what we discover about Patrick’s tolerances for certain foods.

I find that the further we get down this road the more obscure my question are. Neither Patrick’s allergist nor his transplant team really know how food allergies and immune suppression will affect each other. I don’t want to compromise Patrick’s new gut with a lot of foods he’s allergic to. (Food allergies can cause a sort of rashlike reaction and ulcers in the intestine). But I also don’t want to limit his nutrition and ability to wean off of tube feeds if that’s not necessary. I find myself wishing that I knew of an allergist somewhere who has an interest in transplant and immune suppression. I’m not sure such a person even exists.

Anyway – Patrick was asleep in the car 5 minutes after we left the appointment. Next time, I’ll try to allow time for a rest after school. Next time I’ll try not to go alone.

And maybe over the next couple of months we can figure out a schedule that lets Patrick outgrow naps, like he’s trying to do, without spending afternoons and evenings too tired and grumpy to function.

One other appointment this week, feeding therapy. Inspired by Patrick’s interest at a memorial day barbecue, I decided to work on hot dogs this week. I’m pleased to report success. So long as you cut the hot dog in half so he can fit it in his mouth. And watch him and remind him to take small bites. And maybe let him decide he’s done with the bun. Still, a victory in time for summer for a kid who doesn’t like his burgers grilled.

And speaking of burgers, I’m trying to figure out how to translate Patrick’s love of certain fast foods into a working menu at home. I’ve got him eating ham on english muffins a-la Burger King breakfast sandwich. And we’re working on thin sliced roast beef on hamburger buns as a tribute to Arby’s.

I do have one lingering worry. I’ve realized that if they do decide that Patrick can continue on to first grade next year, that means eating lunch at school. And right now, I mostly have taught him to eat warm foods. He does great with fast food, mac and vegan-cheese, pasta in red sauce, hot dogs, cooked veggies, soups, chicken nuggets and french fries. And this is exactly the sort of food that will be being served in the cafeteria. Except, well, that an elementary school cafeteria is not an allergy-safe place. I can’t expect them to watch for cross-contamination.

So I’ll be packing lunches. But I think one of the conversations we need to have in this week’s school planning meeting is whether or it’s an option to heat up food for Patrick in a staff microwave. (It’s already non-negotiable for me that he’ll need an adult to sit with him in the cafeteria.)

And Patrick’s feeding therapist and I did some brainstorming on cold foods that he might be able to eat if we work with him over the summer.

I’ve decided that we will for sure be frequenting the lunch park at the school next door again this summer. But this time, with the hope and goal of being able to figure out lunches that will work to send with Patrick to school next year. Last year, I was able to follow their menu and pack matching foods 80% of the time. But if those things can’t be warmed up at the school, then we may just have to work on being ok with eating the food you had packed for you, even when it isn’t the same as everyone else’s.

One other item of note from this last week. A family moved in across the street from us while we were in Nebraska. They have a little boy Patrick’s same age. We’ve talked about but not found a way to get them together to play. Until this week.. when this boy came and asked if Patrick could play.

This was a growing experience for this mom. I am trying VERY hard to stop being a helicopter parent now that Patrick doesn’t have IV’s to monitor. But it meant that both of us were a bit thrown by a same-age playmate. I’m not sure Patrick knew quite what to do with him. In many ways, he is like his peers. But in many ways, he still has a lot of growing to do. They drew on the sidewalk with chalk a bit, tried out all of Patrick’s ride-on toys. Then they went across the street and played in his yard, too.

I was doing my best to stay looking busy but also keep an eye on them. And to let Patrick build this relationship on his own without my coaching. Mostly they drove Patrick’s ride-on car up and down the street.

When I picked Patrick up for dinner, he was enjoying a snack of animal cracker. I was grateful they were safe, and I decided that next time I send him to play I need to make sure they know he has allergies.

It’s been a full week. I sometimes think my head might explode trying to hold all of this and have a normal life, too.

Getting ready for summer

It is disorienting to realize that next week is kindergarten’s last week of school. We only just started and it’s almost over again. I feel really bad to be just gearing up while teachers are working to try to take care of the mountain of things that need to be done for the end of the year, I’m here trying to squeeze every last drop out of the few weeks that we have available to us.

I am amazed at all that they ARE doing for him, though. For example, I noticed that Patrick’s class was at recess every day when we arrived. So I asked and they revised his IEP to allow him to go to recess with his friends every day. He is in HEAVEN getting that extra time with his friends. And I understand that he is doing better in class, too, as a result.

Also, I’ve been working all week with his special education teacher on getting the forms completed for him to be able to participate in Extended School Year (a.k.a. summer school). They hold 3-day weeks on 4 weeks during the summer. He’ll attend in the morning. The goal is to keep up the momentum that has just started again.

They did offer one amazing thing that I hadn’t even imagined as a possibility. There is a therapy pool at the school. And, because by the time summer school starts he won’t have a broviac line, Patrick’s doctors have given him the ok to work in the pool. It feels like this little piece of normal… my son being able to be in the pool during the summer. Even if it came about in the most abnormal possible way.

Speaking of doctors, we had a follow-up with Patrick’s GI this week. His dietitian came in, too. It’s the first time we’ve seen her since transplant. I wondered if she was amazed to watch him eat a kids meal while we talked. His growth charts look amazing. I think it’s the first time I’ve really looked at one post-transplant. He’s growing at a normal rate. He’s in the 50th percentile.

They ordered some labs to check to make sure that his vitamin levels and overall nutrition are still good as he’s learning to eat on his own, but doesn’t exactly have a traditional balanced diet yet.

Also this week, or maybe the end of last week, I talked to the team in Nebraska about Patrick’s next follow-up with them. We scheduled an appointment in June to replace his central line with a port. (This is why he’ll be allowed to swim, by the way. No more external central line.) We will be going out the first week of June and it will be an outpatient procedure.

I thought we’d have clinic, too, but it sounds like they feel we’re doing a great job communicating by phone and don’t need the extra visit.

So it sounds like we have a game plan for our summer. At least the start of it. Patrick’s last day of school is the last Friday in March. June 1, he’ll have end-of-year testing. June 3, we’ll meet with the school to make plans for next fall. That night, we’ll get on a plane and fly to Nebraska. The next morning, he gets his port and we come home that weekend.

The next week, Brian leaves on a business trip to Norway. And the week after that, Patrick will go to his first day of summer school. He’ll have two weeks on, then off for the July holidays. Then back again. Brian has a pioneer trek with the youth in July and another international business trip in August. And before we know it, it will be time to come back to school.

I’m trying to pull together some materials to keep working on mommy school in the down-days. I’ve let Patrick develop some lazy at-home habits this month but, really, we have a lot of ground to cover over the summer. Hoping that the extra respite time while he’s at school will give me a breath of energy to keep up with all the rest.

Kindergarten Take 2

Yesterday, Patrick went back to school. As I said before, to help protect him and ease the transition, he’s only going to attend school part-time for the rest of this school year.

So, yesterday we headed out about 10 a.m. We stopped at the grocery store on our way to get snacks for the classroom. (Since they are instructed not to feed him anything not parent-provided or approved.) Then, since we’d had a little mishap with Patrick’s g-tube coming disconnected during the night and feeding his stuffed animals instead of him, we swung by McDonalds to get him some french fries to tide him over.

Finally, it was time to go into school. We checked in at the office. Because he’ll arrive late every day, we will check in every day. And then we headed over to the resource classroom.

His special education teacher had a little Patrick height banner in the door welcoming him back to school. It was fairly adorable and made him feel really special. While he worked with her, I sat down with his new aide to give her a little crash course on his needs.

Then, we headed over to the classroom. As we walked down the hall, a little voice shouted out, “That’s Patrick!” Followed by a little chorus of excited friends announcing “Patrick’s back!’

We were a touch earlier to Patrick’s class than he’d been expected and so we waited at the door while they cleaned up centers. All the while, little friends would sneak away to come hug him and welcome him back. Patrick was dying to go help clean up, but was obedient and waited.

Finally, they gathered at the rug and I sat down to tell them about where Patrick had been. I explained that the doctors had found a new belly for Patrick. That he’d had a transplant, which means that they took the old belly out and put in a new one. One voice chimed in, “I bet that hurt!” And I answered honestly that it did hurt. A lot! Then, I explained that Patrick doesn’t need his IV tubes anymore and is learning to eat and he told them how excited he is to be back at school with them.

We talked about washing hands and being careful about germs. Patrick’s best friend asked if having a cough meant they couldn’t sit together. So we talked about catching your coughs in your elbow.

The feeling in the room was pure excitement. I am so glad that Patrick was able to go back to this class that has so willingly accepted him and embraced him for who he is.

I left Patrick and went to talk to the school nurses and to clean out the supplies that Patrick doesn’t need anymore. And then, before I knew it, it was time to go. And hour is going to go very quickly.

Patrick’s first preschool teacher was waiting to greet him as he came out of school.

This is going to be a different phase for us. Patrick was so excited when he got home that it took a long time to get him settled to nap. When he got up, there was barely time to get dinner made.  And then, because he napped late and because he was excited, he didn’t sleep again until almost midnight last night.

Short school days at a school far from home means that it doesn’t make sense for me to come home while he’s in class. I’m planning to use that time to start walking and hopefully get myself in shape a little bit.

But, it also means a minimum of an hour and a half of what used to be my most productive time of day that I don’t have anymore. And it’s going to take some adjustment for all of us to learn to get things done with this new schedule.

Tuesday especially are going to be difficult. My own version of Monday. Because they start with a nurse visit, then school, the Patrick’s home hospital teacher will still come in the afternoon.

But we’ll get there. It’s only a month of school and I can tell you, by the joy in Patrick’s face when he got up this morning, that it is worth trying to make it work. At least, if we can keep him healthy enough.

Transplant Day 56 and Christmas Day

We had a very unique, but very amazing Christmas day this year.

It all started with a little bit of excitement. Every night sometime between 2 and 4 a.m. I have to get up to refill the formula in Patrick’s feeding bag. So at 3:30 I was up and it seemed to go really smoothly and I stuffed the little stocking that Patrick had hung on the IV pole by his bed. And then I went into the bathroom and the pump started to alarm.

Well, I got there quick enough that it didn’t wake Patrick and I fixed the kinked tubing. And then I noticed a very distinct smell. The smell of Patrick’s ostomy bag leaking. I felt around the pouch and it was definitely starting to come off. That usually would mean waking him to change the bag. But I looked around a room full of presents that Santa had already brought and I knew that if I woke him, we’d be having Christmas right then.

Now, my previous history of early Christmas mornings aside, I also knew that Patrick would not have time for a nap in the rest of the day without missing out on some big fun things. So I took a risky chance. I crawled in bed with him, wrapped him in a towel, secured the bag the best I could, and slept next to him. I knew we’d be starting the day off with a big mess and that we’d have to work hard to keep it from making his skin sore. But it seemed the best choice for a good Christmas day.

I had nightmares about ostomy bags the rest of the night and at 6:30, when Patrick started to stir a little, decided I’d waited long enough and let him wake up. I explained he was wet and needed to go right to the bath. He wasn’t so sure, but I didn’t give him a choice.

We got him cleaned up pretty quickly and changed into his spare Christmas morning pajamas. (We learned long ago that we need two pair of special Christmas PJ’s.) We asked him if he thought Santa would have come and he said no. Somehow, he’d missed all the presents on the way through.

But when he did see them, that’s all he wanted.

We let him start with his little stocking. That was simple stuff. A Dora doll, some hot wheels cars, some silly putty. Then Brian pulled out the big stockings.

I’ll confess. I was pretty worried about Christmas stockings this year. I could not figure out how to go about getting that part of Christmas ready when Patrick needed to be with me and time in stores was limited. Heck, we tried to buy stockings once and had to leave the store without. So when a package from Brian’s work showed up full of gifts, including stockings, I was relieved.

Patrick’s stocking was huge. It took half an hour to go through. Of course, that was the tip of the iceberg for Christmas morning. Between family, friends, DDM, and  gifts donated through the hospital and  the Ronald McDonald House, we were very well taken care of this Christmas. When I look back at myself a month ago, lying awake in the hospital in tears and unable to sleep not being able to imagine how we could possibly pull together Christmas this year and contrast that with the abundant and generous outpouring that we received I am humbled and grateful.

A phrase from a verse in Malachi kept running through my head.  Malachi 3:10:

“prove me now herewith, saith the Lord of hosts, if I will not open you the windows of heaven, and pour you out a blessing, that there shall not be room enough to receive it.”

Indeed – it took most of today to make space to put away Patrick’s many gifts and there is a small collection in the corner of the “too much” that we will probably pass on to other children.

After opening gifts in our room, we let Patrick pick a couple of toys and we headed down to the kitchen to take care of meds and formula. It was fun to see children pop in and out with Christmas presents and smiles on their faces.

Finally, 10:30 rolled around and Santa was due to arrive. Christmas with Santa in the Ronald McDonald House is going to stay forever in my memory. Each family had a pile of presents with our names on them. Most were simple, some were astoundingly generous. Santa went around the room telling the kids about how he’d picked certain things just for them and which gifts were most popular.  I’ll never forget the tears in the eyes of one mom whose family had arrived for emergency surgery just a couple of days before who really did think they’d be missing Christmas this year.

And then, after presents, we gathered for Christmas brunch. The Hilton had sent a gourmet meal over with roast beef and turkey and potatoes and stuffing and the yummiest green bean casserole on the planet and about 20 different desserts.

We ate well and then had to reign ourselves in because we knew we had other plans.

In fact, right after brunch, I went up to the room to pack our things to go for the rest of the day. A couple of my very close friends from college married and live two hours away in Iowa. And they invited us out for Christmas dinner. So, we took a drive yesterday. It was fun to see country life in Iowa. And it was amazing to spend some time with friends.

Drue and Rachel have to be two of my favorite people on the planet. They’ve been through a lot in their 13 years of marriage. And now seem so happy and in their element. Both grew up in smaller towns and so it is natural that they’ve settled down in bigger small town in Iowa with 5 acres of land and a historic house they bought for $1 and moved to the lot.

While they finished up making dinner, (smoked leg of lamb and homemade gravy and Idaho mashed potatoes!!) their daughter, Julie, took Patrick out to the chicken coop and he came back with his shoes all muddy.. So then he had to play around in stocking feet all the rest of the evening, which he loved. And they gave him a real metal slinky and showed him how to use it on the stairs, and he loved that, too. And mostly, he was tired because we gave up naps to try to get him to sleep at night and he might not really be ready for that.

BUT he made it and we had a lovely dinner and played Catch Phrase afterwards and reminisced and caught up. And we got to see the stars (something I hate that Patrick misses having to always be in the city so he is close to medical care and clean.) And then we drove back and Patrick managed to stay awake the whole way, which mean he would sleep.

But we ended the day almost as excitingly as it started because one of the bottles of formula opened and spilled in the cooler and so we had to make a new batch of formula and clean up the sticky mess. So we got to bed a bit late and then Patrick woke up at 3 and insisted I come sleep in his bed. So my dreams of an early bedtime and a then sleeping in till 9 were both dashed, but it was still a wonderful Christmas.

And today was mostly quiet with a trip to Costco (then a trip back to the room to replace the feeding button that Patrick accidentally pulled out as he got out of the car. That was traumatic and he talked about it all day.).. Then we took another trip to Costco where we actually bought the totes and batteries we went for. And we spent the day resting and cleaning and playing with new toys. And today we DID make it to bed on time. And maybe tomorrow we’ll even sleep in.

I will never, EVER forget this Christmas. This season brings out the best in us. We are kinder, more generous, more Christlike. And as I read the Christmas story with Patrick this month, I could relate more with the story of Mary and Joseph far from home, staying in a stable of all places as their baby was born. But Heavenly Father knew where they were. And He sent angels to tell ordinary, humble working men – shepherds. And then those shepherds went and it was through those ordinary people that the Lord sent the message that He remembered and He knew what was happening and was was going to happen.

And we, through the ordinary people, have seen the hand of the Lord this Christmas.

Some of you are reading this. I need to say thank you. You may think that what you have done was something small. But this Christmas was anything but small for us. So thank you.

Transplant Day 46 and Physical Therapy

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Today was a busy day. I knew we’d need to be up early to start out with labs, but last night was another night where Patrick didn’t make it to sleep till midnight. So when he snuggled up next to me and fell back asleep this morning, I didn’t really have the heart to wake him.

At 8, as my alarm was going off after the 3rd snooze, I decided we were going to have to bite the bullet and get up. I could tell that sometime during the night Patrick’s ostomy bag had come loose. Thank goodness I’ve got a good drain system set up so it didn’t make a mess that woke us earlier. But it did mean that we had to start off with a bag change right away.

Patrick wasn’t so sure of me when I put him in the tub without waterproofing his bag.. But it actually worked very well to make it come off quite easily and changing the bag went very smoothly. But we were really pressed for time so when the phone rang to tell me they were showing his nurse up, he was still quite naked and wrapped in bath towels.

We hurried to get a diaper on and wrapped him up in a blanket and the nurse was able to draw his labs. Meanwhile, my phone rang and it was the pharmacy. It’s been one week since discharge. Time for a new shipment of supplies.

When we got through all of that, it was already 9 a.m. I begged Patrick to stay on the bed and watch Blues Clues and let me run downstairs for his medicines alone so it could be faster. He agreed and we were able to get all of his medicines given on time. But in the meantime, he was a lot happier in the room watching TV than he usually is trying to entertain himself while I do up meds in the morning. In fact, he happily stayed and played and watched TV for another hour and a half.

That gave me time to clean up the room a bit and to set up the printer that my mom and dad bought me for my birthday. (I knew I’d want to do Mommy School here so that was one of my first wishes.)

Finally, I was hungry and he needed formula made so it would have time to chill before starting the new batch running and we had to give in and leave the room. Besides, Patrick needed me to buy him new socks. So we went downstairs and got ready and went to Target.

Let me tell you about why Patrick needed new socks as it brings you to the next part of our day. If you are new to our story, you may not know that Patrick has an anoxic brain injury and cerebral palsy. When he was 8 months old, his heart stopped because of an infection and some medication they were using to treat it. It took over 15 minutes of CPR to revive him. The result is that the ends of all of the blood vessels in his brain were deprived of some oxygen. That accounts for a lot of his behaviors and most of his developmental delays and learning disabilities.

When you hear the phrase “cerebral palsy” you probably imagine someone with a very severe case whose body is contorted with muscle spasms: someone who can’t eat, can’t talk, can’t walk, etc. That is what you imagine because that is the presentation that you can’t ignore so you ask about it. But what cerebral palsy really means is that at birth or shortly thereafter, the brain was starved for oxygen, leaving the patient with a “palsy” or lack of control of the muscles of the arms or legs or more. The signal from the brain to these limbs gets confused or altered somewhere along the way causing unexpected movements, often causing the muscles to spasm.

Well, over the past week, I have seen Patrick’s hip and foot of his right foot turning inward. He is becoming more clumsy and having  a harder time controlling those muscles. I started making him wear his walking brace for half to all of the day. (Enter the need for new, longer socks that would prevent rubbing from the brace against his leg.) We’ve been doing stretching, too, and those muscles are much tighter than they have been in years.

Today after shopping and a short nap, I took Patrick for a physical therapy evaluation in the hospital’s outpatient clinic. I wanted to evaluate his recovery and I was especially worried about this problem with his gait.

The news was good. First of all, Patrick is a “rockstar” from the physical therapy standpoint. His incision is better healed, his movement is better, his pain level is less, and his energy is more than most patients at this point. He is really doing remarkably well.

The therapist said that she thinks that the spasticity in his leg is likely a combination of problems: the trauma of transplant, the effect of new medications, the exhaustion of recovery. In other words, she said that it’s probably something that he’s feeling all over, we just are seeing it more in his leg because that is where he is weakest. She said that for every 1 day in the hospital, we should expect 2 days for his body to recover. Considering that he spent 39 days in the hospital, it will be a few months before he is back to full strength.

The prescription is simple. Keep doing all of the exercises we were working on at home for leg strengthening like climbing stairs, squatting and tiptoes, bike riding, jumping. But, for the next little while, have him wear his brace so that while his nerves and muscles are relearning and recovering, we are training his body to move the right way. Patrick is not amused by this prescription. He keeps asking me to let him take his boot off because he feels like it’s in his way.

The therapist said that she is seeing such progress in the area of gross motor skills that, given our insurance policy’s very limited therapy visits, that she feels like physical therapy would not be her focus right now. She recommended instead that we take advantage of the opportunity to work with an occupational therapist who specializes in feeding in kids post-transplant while we are here.

She also said to allow him lots of rest. And I think that I realized today that doing so may require a little more keeping him in our room. When we hit our room, all of the sensory overload caused by the rest of the house melts away. He is happy watching TV and doing crafts. Tonight it finally clicked for him that the tote in the corner is a toybox and that he is allowed to go get those toys out and play with them.

I don’t know for sure. We’ll need to find a balance so he gets social time, too. We both need it. But we both were much happier with some quiet, one-on-one free play time in the room.

We had another special treat tonight. One of the men from our church who helps bring the sacrament has talked for a while about inviting us over for dinner. Well, tonight, we got the chance. That was really such a treat! Patrick had a great time playing with their two little ones (ages 3 and almost 5). I spend some time with some other adults about my age whom I have a lot in common with. And just take a break from all of this medical stuff for a while. But also, without a ton of explanation. He has been visiting for a while now. He was also the anesthesiologist on Patrick’s case the night of transplant. So they know the story and some of the things they should expect. It was good to just be normal for a little while.

We were both sad to see the evening come to a close. But it was bedtime and we needed to unwind to go to sleep here, too. Setting up my printer meant I also set up a place my laptop can sit next to the TV, so we were able to turn on one of the new DVD’s that Brian’s parents sent him. We watched Curious George’s Christmas while I cleaned up the room, prepared feeds, drew up medications, and got Patrick into his pajamas.

He made it to sleep by 10:30 tonight which isn’t the greatest, but is better than midnight. He also is starting to prefer to go to sleep in his bed on his own. He won’t admit that. He would love for me to lay with him. But he has started to do his usual putting himself to sleep routine if I’ll just lay with him for a bit, then tell him it’s time for met o kiss him goodnight. I kiss him and go lay in my bed until he falls asleep. Then I get up and try to get done whatever was waiting for him to rest.

Tonight while I waited, I decided to poke around Pinterest for kindergarten homeschooling ideas as Patrick’s teacher was still sick today and an hour a week of school is certainly not getting him the education he needs or that his little mind is craving. I am thrilled to say that I stumbled across a curriculum that looks like it will pick up exactly where he left off at school and that really fits his learning style. It even has little printable readers. (I’m trying to decide if I print them or see if it’s possible to throw them into an e-reader format to save on printing). I’m excited to grab a little bit of playroom time tomorrow morning so I can get it downloaded and start working on it.

One last bit of news, then I have to post this and get to bed. My eyes are drooping. Patrick’s transplant coordinator called this afternoon. The great news is that his prograf level is finally in range. Just barely, but it’s there. That’s the first time in a week. That means no medication adjustment. It also means that we get to switch to twice weekly labs. And THAT means that we can sleep in in the morning if we’re tired. At least till meds are due at 9.

However.. you probably wont’ get to read this until then because I am just plain too sleepy to go hunt down an internet connection until morning.