Patrick Hoopes

Once we were settled at home after Patrick’s infection, Brian finally dared go to a doctor. And, after some searching, came back with a diagnosis of mono. It hit him really hard! Fevers that were only controlled by taking maximum doses. Exhaustion. Aches. Pains. He was miserable. For the next week, he worked when he could, and then he’d come home and sleep all he could.

I don’t know if it helped or hurt that the car was in the shop. On school days, it meant that Patrick and I got up early and drove him into work and then sometime in the afternoon, went back and got him and brought him home. That meant sometimes that he got home earlier, but sometimes it meant that he was stuck at work while we finished up with a therapy appointment, too.

I also wasn’t much help myself, having picked up a virus of my own. Thank goodness for little whispers of inspiration. I was watching Patrick’s birthday video with him for the 300th time and realized how similar it was to the Signing Time series, and that if he was immitating words and actions he saw in his home movie, he might just be ready to learn to immitate signs and words. So I brought home all the DVD’s I could find at the library and Patrick..LOVED..THEM! Patrick has never been much of one for TV, but these videos reach him! And so, since I wasn’t feeling great and Brian needed sleep, we spent a lot of time curled up in the basement watching Signing Time.

Within a week, he was already using many new signs and demanding songs from these videos as lullabies at night.

And so, we survived that week. At first when I found Brian had mono, I freaked out, worrying about what would happen to Patrick if he caught it. I mean, a basic cold can set him back for a month. But, when I called the transplant team to report our bad news, they were kind of excited. They said it would really be better for Patrick to catch mono before transplant so he wouldn’t be at risk for it’s complications if he was exposed after. Therefore, as a family we did a lot of kissing and food sharing all week.

It was a tough week. I often take Brian for granted. And I missed his help a lot while he was sick. Thankfully, after just a month he’s seeming to feel much better now. Tired from time to time, but feeling like himself.

And by the beginning of week 3, we had our car back at last complete with a shiny, new engine. We also managed to squeeze in an OT and PT evaluation and the first therapy session with Patrick’s new speech therapist. Not too shabby for a very sick family.

Brian says that our family has adopted a new law: Murphy’s Law.

If you’re not familiar with this law, it’s simple. Simply, “Anything that can go wrong will go wrong.”

Rewind to the end of January. January 29th, to be exact. A Sunday. When we got up for church on Sunday morning, Brian wasn’t feeling well. He was tired and a little warm. He’d worked really long hours all the week before, though, and it’s not uncommon for that to make him sick, so we just forged ahead anyway.

We went to church, took naps, and then decided to drop his car at the shop on the way to family dinner. We’d had it in the shop the week before and they’d implied that it had a broken head gasket, maybe worse, and may need a new engine… but repairing a car we own was still cheaper than replacing it, and so, to the shop it went.

I knew by then that Brian was really, truly getting sick and so we made a quick escape from dinner. About 8, we put Patrick down to bed. But he didn’t sleep. He just kept calling for me. So I went in and did my best to comfort him, but he still wouldn’t sleep. At 9:30, his temperature was 99.4 and he was not sleeping in my arms, so I decided to try putting him back to bed.

At 10, Brian went to check on him. He felt warm, so he checked his temperature again… 102.5. I had a good cry, then packed our bags, and we headed to the hospital.

Patrick was really doing well, considering.. His fever didn’t go much higher and he wasn’t having chills.. Still, he’d had an upset tummy all the week before and we knew odds were pretty good that he had an infection.

I tried calling the GI on call to let them know we were coming, but they didn’t respond to pages, and we knew Patrick needed the E.R. regardless, so we just went in.

Amazingly, the ER was fairly quiet, and it didn’t take long for them to show us to a room. Things started out as usual. They gave Patrick some Motrin, drew labs, took his history. However, the nurse practioner (NP) who was assigned to Patrick got all caught up in me saying that he had a tender tummy. They sent Patrick back for an X-ray, which was normal…

And then we waited. Especially with Motrin on board, Patrick wasn’t terrifyingly ill this time, and so they seemed to not know what to do with him. They paged the GI on call, too, and didn’t get an answer. And so we sat, and sat, and sat. They didn’t start fluids or antibiotics or even put on monitors. I was pretty upset at the lack of action, but turned my attention things in my control, and I did my best to get Patrick to sleep, which is a feat. Finally, around 3, I’d finally succeeded and even fit in a little nap myself…

Then Patrick’s Motrin wore off and his fever came back… full force this time… Quick rising temperature, chills, rigors (uncontrollable shaking). He was miserable, we were helpless… And the GI on call still wasn’t answering.

Finally, they called the on call liver doctor (who is also a GI) and he told them in no uncertain terms that Patrick always gets antibiotics and an admission with every fever. The fact that Patrick hit septic shock protocol almost simultaneously kind of sealed the deal.

So – they started antibiotics, gave some fever reducers, and finally got us to a room around 5 a.m.

The next day was rough. I told several of the doctors that Patrick’s last infection had been resistant to the usual drug cocktail and gave them the name of the antibiotic that had treated it… however, it wasn’t until the attending (who happened to be Dr. Jackson this time, hooray!) did patient rounds that they caught on and started an antibiotic that actually worked to treat the infection.

Until that point, Patrick was so miserable that he wouldn’t even sit up in bed. I could barely moving without him being in agony. And so, since we also had gotten no sleep, I just stayed in Patrick’s bed. All day. Thank goodness for a good friend who brought me a muffin and yogurt and some amazing chocolate drizzled popcorn… because that and some crackers, string cheese, and water provided by the nurses were all the nourishment I got all day. I couldn’t get out of bed for longer than a trip to the bathroom, and that only with support from the nurses.

Finally, though, that afternoon, after the right antibiotic had been given, Patrick made a quick turn-around. By evening, he was willing to sit up and play in bed. By the next morning, we were begging child life for more toys.

However, we didn’t do too badly on our own for entertainment, either. First of all, once rested, Patrick started out the morning hiding in his blankets with me… which reminded me of someone telling me about how great blanket forts are in hospital rooms. So, by our 3rd morning, I took the bedding from my bed and a few safety pins and made us a fort.

We also managed to steal a wagon that we filled with toys, got some markers and stickers from child life, and Patrick decorated pictures for the walls. (As well as some fine artwork on his hands and arms.)

We made regular visits to visit Spiderman and the playroom, and on one outing, found a couple of volunteers with a guitar and some drums singing in the waiting area of the 3rd floor. We stopped to listen and before I knew it, they’d recruited Patrick and another boy into the band.

We helped provide some hands on learning opportunities from some student nurses, created an upset with the nursing staff by telling the charge nurses that they were overtasking Patrick’s nurses, let and entire class of med students practice finding Patrick’s spleen (at least his splenomegaly is good for something), practiced walking up and down the hospital stairs, replaced Patrick’s worn out button, caught up with some of our favorite residents (who were first years when we met them and now are finishing their residencies and LEAVING US! With new first years to train, no less!), and last, but certainly not least…

…taught Patrick to ride his IV pole.

With some prodding, we convinced them to send Patrick home on Thursday afternoon with IV antibiotics to give for the next 2 weeks and a new oral antibiotic regiment to try to wipe this particularly nasty, resistant bug out of his system once and for all.

While Patrick and I were at the hospital that week, Brian did his usual tricks of balancing home, work, and hospital visits (to feed me and keep me sane). But his fever didn’t go away. In fact… He ran a consistent fever all week.

And he did it all in my car, because his was in the shop. Turns out we needed a new engine, after all. But at least when you’re in the hospital, you don’t care much that you’re a one-car family.

Patrick weighs 14.8 kilograms, 15 with clothes on, and is exactly 3 feet tall. I know that because he was weighed and measured no fewer than 6 times in the last month and a half. We were in doctor’s offices that often.

Patrick prefers to spend that in-office waiting time inside the cabinets under the sink.

And I have sat on this post until I had all the doctor’s input to make sure that what I was posting was accurate.

So let’s rewind in time a bit. Let’s go back to November when the clinic that does Patrick’s speech therapy finally got around to billing the services that he received at the end of summer, supposedly with new billing codes that would clear the insurance company because they met the criteria AND were supposed to have gone through the preauthorization process.

Well, they didn’t. They came back denied. My case manager couldn’t get them to go through and so in the middle of December I found myself suddenly trying to understand the nuances of speech diagnoses. Finally, I got to the point where I realized that we were going to need to change providers to free ourselves of the baggage of two years of partial diagnoses and billing errors. And, as my research had turned up that it is not only possible, but quite probable, that Patrick’s speech problems are neurological in nature, and that that is the only diagnosis that will persuade our insurance to pay for speech therapy, I decided that 2 and a half years after his probable injury, it was time for Patrick to see a neurologist. If we could get a neurological diagnosis, it would be so much easier for a new provider to bill the way the insurance wants.

And so, I called and left a message for Patrick’s pediatrician requesting a referral. And then I called neurology, where I found out that Patrick was considered an existing patient (and probably didn’t need a referral.) And, because it was quiet between Christmas and New Years, they were able to squeeze us in to see a Physician’s Assistant that same week.

What a strange conversation that was. The PA had reviewed Patrick’s notes from several years before where Neuro had come to consult after his cardiac arrest and given Patrick an all-clear, but call us if things change, diagnosis.

And then here we were. She said, “Well his movements are symmetrical” and we said “But his development has not been, oh and by the way, take a look at his right foot.” She watched him write. She listened to him talk. She measured his head, which she said was quite small (which we knew but had attributed to Short Gut and not the brain injury). As she realized the extent of Patrick’s developmental delays and other problems, she seems truly surprised that we had made it two and a half years without coming back to neurology sooner.

But, when we explained that he’d had a team of early intervention therapists and private therapies and an amazing rehabilitation specialist, she agreed that we’d been doing everything right.

In fact, the only that that surprised and scared me was when she asked if Patrick had been having seizures and explained that he was likely at risk for them.

She didn’t question at all that Patrick was showing all the signs of a brain injury. In fact, she explored the option of making the diagnosis then and there without any further testing. But, in the end, the attending doctor wanted an MRI and we agreed it was probably time. Especially when she explained that now that Patrick was 3, he would qualify for “conscious sedation” instead of general anesthesia. Although still risky, it meant no intubation and a much easier recovery.

And so, we went ahead. That test was done just last Monday and went about as smoothly as could be hoped. The only catch was that, even though I know I said it more than once, it didn’t sink in when I said that Patrick needed TPN or something like it during the test, that they’d need to order a replacement for the TPN. But they got it done and he got a lovely nap and a braver-than-usual-though-clumsy-and-stupid afternoon.

And last Friday I finally got the results, which were just what we expected. Patrick does indeed have an anoxic brain injury. It was caused by a lack of oxygen to his brain during the 15 minutes that he needed CPR. It has a “watershed distribution” which Wikipedia has taught me means that the injuries are on the far ends of the blood supply. It’s the type of injury often caused by a stroke and that would explain easily why the muscles tone and his speech and fine motor skills have all been affected.

And…. That is all I will know until we can meet with the attending in person, who unfortunately didn’t have an appointment available in Salt Lake until May. So, we’re on the waiting list, but we aren’t anxious enough to travel to his other office because, well, it doesn’t change much.

We are just getting a name for what we already knew.

Which leads me to our next Dr.’s appointment. Remember the developmental pediatrician I mentioned in Seattle? Well, after hearing the resident’s report, he came in and talked to us. We told him all the same things about Patrick’s motor skills and speech skills being delayed, about his sometimes spotty judgment, and the other problems that we attribute to a suspected brain injury. While he listened, he felt the muscle tone in Patrick’s legs, tested his reflexes, and then asked if Patrick would walk for him.

So we took our bare-legged little boy out into the hall and let him walk and run.

After just a few minutes, the doctor brought us back to the room and told us not to listen to our emotional response to the words he was about to use. He told us he wasn’t telling us anything we didn’t already know about, but he was going to give it a name that we could use to make it easier for Patrick to get services to help his development.

The diagnosis: Cerebral Palsy. His form is called “diplegia” meaning that it affects his legs. And it is “of the mild to moderate variety.”

Now, before you start googling and find all kinds of pictures of children with severe, crippling muscle spasticity, let me give you a definition from the National Institute of Neurological Disorders and Stroke:

“The term cerebral palsy refers to any one of a number of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination but don’t worsen over time.”

Did you catch that? Cerebral Palsy means simply that before the age of 3, a child had neurological damage that permanently affects the muscles and coordination of the body. It is, by definition, NON-PROGRESSIVE. That means that it is what it is. It won’t get worse.

When I ran this diagnosis past Patrick’s rehabilitation specialist, she defined it as an injury to the developing brain that affects the muscles and does not get worse over time.

In other words, we have been given a name for what we already knew. And because we have a name – a name that is well-known and carries a pretty powerful emotional response – it will be easier to get therapy to help Patrick learn to walk and to talk to the best of his ability.

See that turn inward turn in his feet? The way his right toe drops and points? That’s what the doctor called diplegia and is the reason he wears a brace.

I wanted to get some other opinions before we published this too broadly. Patrick had an appointment with his GI and with his Rehabilitationist right after we got home. And I wanted their opinions, too, before we subjected you to whatever just happened in your mind when you read those words.

Dr. Jackson, the GI, sent a resident in to do a workup first. And so he was forewarned and I didn’t get to see his initial response. He was hesitant at first to consider the diagnosis because the case is so mild. However, he watched Patrick walk and felt the muscles in his legs and agreed that, although it doesn’t tell us much, that the diagnosis fit and, as it might help get Patrick needed help, he agreed with it.

The rehabilitationist was even more hesitant because, she said, it was such a broad, general diagnosis. And, on the spectrum of possible symptoms, Patrick’s are SO mild that it almost doesn’t merit giving it a name. She said that her hope would be to give more specific diagnoses like she has been doing like, for example, dystonia to describe the muscles in his legs and apraxia to describe his speech. But, after some thought, she too agreed that it could be a helpful diagnosis to have.

And so, until we can meet with neurology and get a name for the actual injury and get their opinion, this is the name we’ll be using.

So that’s not what you expected I’d be writing about the doctors saying, is it? In fact, on the gastrointestinal/transplant front, we don’t really have new news. Patrick is probably the healthiest he’s ever been. He’s not gaining weight quickly, but he’s getting taller.  His liver isn’t better, but it’s not worse and according to labs, he’s borderline healthy. Despite an obscene number of drug shortages of crucial TPN nutrients, Patrick seems to be able to absorb what he needs from the half-dozen nutritional supplements I’m giving him. (Which is only bad news in that I HATE having to give him a half dozen nurtritional supplements every day: some crushed, some as drops, some in suspensions that stain your fingers.)

I asked the transplant dietician if I should be trying harder to feed Patrick, either orally or with his g-tube. She said that she didn’t see any point in pushing things now that might make things worse. He is happy and healthy and likes trying new foods. And that is what will benefit him most after transplant.

The transplant team was pleased with where Patrick was and said to stay the course.

Patrick’s GI back home was happy, too, and gave Patrick a nifty pair of winter gloves that he faithfully wears for hours at a time because they came from “Ko-ko Ja-ja” (Doctor Jackson).

Napping, gloves on, on the way home from Dr. Jackson’s office.

And we are armed with some better neurological information that is helping us to get Patrick the therapy he needs.

I won’t go into much public detail about the issues I’ve had with billing on Patrick’s therapies. Suffice it to say that Primary Children’s Outpatient Rehab in Taylorsville has lost a speech patient due to their billing practices. I think, after months of battle, I’ve got this sorted out so our insurance can pay those bills, instead of us getting stuck with them. We’re hoping that we don’t also have to change physical therapists, but time will tell.

Meanwhile, I think I’ve found a wonderful new speech therapist for Patrick. Her office is a little farther away, but it’s a small, family-run office. The therapist has in-hospital experience with medically-complicated children AND is very focused on the role that overall development plays in developing speech. Patrick enjoyed his evaluation and so we hope that all goes smoothly with the pre-authorization process and we can start therapy soon.

After a much needed nap, we felt good enough to dare go out. I know a couple of other families with kids in the Intestinal Rehab program at Seattle Children’s through my online support group. So, we headed over to University Village to meet one of them. It was raining, but Seattle’s made for rain and there’s a decent little indoor playground there. It was fun to visit with the other mom over a light dinner from a coffee house and swap stories about Short Gut and adoption. (Her son was adopted, too.) And Patrick thought having daddy help him on the playground was great fun, too.

Playing in a display curtain at the EMP

We grabbed some cupcakes at Trophy Cupcakes, then headed up to a park on Queen Anne’s Hill to give Bailee a good view of the city and space needle.

We were going to eat our cupcakes there, but the rain had turned bitter and cold, so we just went back to our room and got Patrick ready for bed and ate them after he slept instead.

And speaking of sleep, after some very harrowing vacations in the past year, we finally learned how to help Patrick sleep in a hotel! So well, in fact, that he was fine with the fact that he was able to ignore the fact that he was sleeping on the floor of the same room as Bailee.

So here’s the discovery. First, I mentioned the air mattress. Having Patrick comfortable with his bed was a big plus. As was the fact that it was just right for me to lay down with him while he fell asleep, and then slowly roll out onto the floor next to him and sneek away. Second, we drugged him. Not with cold medicines. With melatonin. A GI fellow prescribed it for him last time he wasn’t sleeping in the hospital. And when I asked if I could use it for travel, he not only backed the idea but was downright excited about it. The smallest possible dose is enough to help Patrick fall asleep within half an hour and keep him sleeping for 8 hours straight. At which point he is decidedly awake. So, yes, he was up at 5 a.m. But he slept all night!

Wednesday morning we had a developmental study at the University of Washington. One of the surgeons here is researching how intestinal failure affects development. So we met with a developmental pediatrician and a developmental psychiatrist. They did a test to determine his current developmental levels. We’d heard reports of how boring and useless this study was, but for us, well, it was just like all the other developmental studies Patrick has ever had done. Except he was sleepy and extra uncooperative and probably got a lower score than expected. He also surprised us by doing some things we didn’t know he could.

In the end, we actually got some good information from the visit, which I’ll cover in my next post “What the Doctors Said.” Suffice it to say that this once, we felt that it was worth the cost of the extra day of travel and the three and a half hour appointment.

We left our appointment just after noon and went to pick up Bailee at Pike’s Market, where she’s spent the morning. The combination of bad GPS directions and my confusion got us a little bit lost along the way, but we eventually found her, then found lunch, then found our room for a TPN delivery and a good nap.

We went fancy for dinner that night. We took Patrick on the monorail, and then walked to a Tom Douglas restaurant called Cuoco. Brian was very excited to find arancini on the menu and Patrick loved the beets and allergy-safe spaghetti.

On the walk back to the car, though, a light drizzle turned into a bitter cold rainstorm. We were two blocks from the garage when the street we were on crossed a major road and we couldn’t cross. We ended up detouring a few block more out of our way and we were all bitter cold by the end.

The next morning, we got up early and packed our room. Two nights in a suite on Lake Union was about all we could afford for that trip. Besides, we had an invitation to visit the Laylands in their new home.

With a morning to kill, we decided to visit the Experience Music Project. They had some really fun exhibits. In the Avatar exhibit, they have a magic touch screen table that, well, I don’t think I can give justice in describing here, but if you have the chance, check it out.

Patrick tried on these really big shoes.

And Brian stepped into a scene from the movie and got to be animated.

Then we went up to the sound lab on the first floor. Patrick played a bit with the keyboards and guitars, but took best to the drums. Is that a surprise? He and daddy had a jam session on a real drum set.

After the museum, we grabbed some lunch, dropped Bailee at University Village, hurried up t the hospital to meet up with another Short Gut Family we know there. Then, after our clinic visit, we headed up to the Mukilteo/Everett border where Lindy & Kelly are finally feeling settled into their new house.

It was so good to see these friends again! And an added treat to meet their new baby boy. This little boy has had his own set of health problems and challenges and Lindy and I have found another dimension to our friendship as we’ve shared our sons’ trials. It was good to get to experience him in person.

Our visit to the Laylands included some homemade stir fry noodles, a trip to the Woodland Park Zoo where Patrick and Lauren fed real dead fish to real live penguins, a burrito the size of a baby, a lot of Wonderpets, a visit from Befana, a toy-binge for Patrick in Lauren’s toys, and a kids-free date night facilitated by Bailee.

And it seemed to all end too quickly.

We flew home Saturday afternoon. Due to some plane shuffling and our tickets being purchased on different days, only Patrick and I were seated together. Can I say, though, that it was nice to have some one on one time with Patrick. The flight attendants made Patrick stay buckled in his seat, but were also very good with him and he enjoyed his big boy flight. We watched his birthday movie at least 4 times. (My new phone has a screen lock function that makes it perfect for Patrick to watch movies on.) And we played with stickers and cuddled.

And at the end of it all, we celebrated Patrick’s gotcha day by snuggling down as a family all safe and snug in our own beds in our own house.

I was more than a little nervous about getting Patrick and myself to Seattle on my own. Especially on the heels of several days of being the only grown-up and therefore not having any time away from Patrick to pack. So, when an opportunity for help for me came, we took it.

Help came in the form of a college student named Bailee. Bailee loved children with special needs. Was born for them. And so, she is studying special education and, at every opportunity, she provides respite care for families of special children. Bailee offered to buy a ticket to Seattle so she could have a little vacation, and we helped with her other expenses as repayment for some help with Patrick.

Still, as Bailee didn’t arrive till Monday night, I relied on my awesome little sister Marcy to come and help me get the house in order that day.

Then, after Marcy was on her way and dinner was over, I packed some, then stopped to change Patrick’s dressing and put him to bed.

That’s when we found that the repair done on Patrick’s line just before Brian left town was leaking. So we made a run up to the hospital instead of going to bed. It was past midnight by the time we made it back home. And it was well past 2 by the time I finished packing.

I slept with my clothes on and 3 alarm clocks set because we had to be up at 6 a.m. to be ready to go. I got Patrick dressed, meds given and packed on ice. We loaded up the car, and then Brian’s dad came to drive our car to the airport.

I always feel like such a spectacle in the airport with our 3 suitcases, diaper bag, carseat, stroller, TPN, and laptop bag. And that’s packing as lightly as possible. Thankfully, Bailee took care of Patrick as I took care of the rest of getting us there. And the airport was uncrowded. Security went fairly smoothly, though Patrick did get a false positive for explosives when they swiped his backpack and had to be rechecked.

Still, we made it to the gate with just enough time and enjoyed a pretty uneventful flight. Patrick was even tired enough that once the novelty of having Bailee there to play with had worn off, he curled up in my lap and went to sleep. I was so tired that I remember looking at the clock when we hit turbulence and thinking that at that rate, I wouldn’t sleep at all… and the next thing I knew 45 minutes had passed and we were landing.

Brian was waiting for us at the gate in Seattle. He’d left North Carolina at 4 a.m. in order to land in Seattle before us and therefore be allowed in the terminal.

So we gathered up our mountain of luggage, picked up our rental car (Thank goodness for minivans!), and drove to the hotel where, after a yummy lunch at the chowderhouse down the street, Patrick and I curled right up and went to sleep.

 

I can’t believe it’s true! But – my little boy is a sunbeam!!! If you don’t speak Latter-Day-Saint-eese, that means that now that he’s 3, he has graduated from the “nursery” class at church into Primary, or the big kid sunday school. Ok, so it’s only Junior Primary. But still, it’s a big deal. It means that instead of spending the Sunday School hour playing with toys with a short lesson and a short singing time squeezed in… now he spends those two hours learning about Jesus and scriptures and choosing the right… sure, with some coloring and a little snacktime thrown in… But mostly Sunday School. Reports are that he will stay in his chair for about 15 minutes at a time, which I think is pretty darn good.

Sending Patrick to Primary scared me. A lot. I wasn’t sure if he could handle the structure. I worried about teaching a new teacher. I was afraid that singing time would be too much for his sensory system. But I knew it was time. He doesn’t like for me to hold him back.

Thankfully, we have an amazing Primary Presidency who went out of their way to learn about his needs and be ready for him. They got a list of safe snacks for him. They assigned him two teachers (so they’d have enough hands in case of an emergency.) And one of them is an amazing woman who is a nurse and mom to four beautiful girls, two of whom are angel babies who had more than their share of medical woes while on this earth. He couldn’t be in more capable hands.

The week before he was supposed to start Primary, they had a “Pancakes and Pajamas” meet your teacher dinner. I came along for two reasons. First, breakfast foods scare the begeezus out of me. I mean, seriously, you should see what happens to Patrick when he accidentally touches eggs and breakfast has scrambled eggs, egg-filled pancakes, and milk to drink. Scary! So I packed some safe noodles in a lunch box. And Patrick’s teachers and class were SO contientious about making sure the kids washed their hands.

The dinner fell at a time that I could let Patrick go without tubes on and he thought running in the gym with his classmates was about the funnest thing ever. I don’t think he’s ever been allowed that opportunity before.

So we make it safely through my first fear.

Reason two for my coming was to show his teachers his pumps and tubes and other things. That went really, really smoothly and I knew that I didn’t need to be afraid.

But then I discovered new third reason to worry. After breakfast, we went back to the classroom so the kids would know where they’d meet. They gave them all a little paper necklace to color and lace. The other kids were coloring withing the pictures (if not within the lines). Patrick made a few marks, got frustrated because the papers were too small and wouldn’t hold still, and started throwing crayons instead.

Developmentally, physically… he is no where near his peers in the class. And that broke my heart to see.

Next, we went back to the gym where they gathered the kids for a game of duck, duck, goose. I had never realized before how ill-suited this game is for children with special needs. First of all, it required sitting in a circle with other kids. This alone was a challenge for Patrick, but I thought, “We’ll put him with kids he knows and he’ll do ok.”

Then, the rules of the game require that someone be able to walk around and touch everyone on the head. And if you’re tagged, you must get up and run- quickly.

Well, I couldn’t leave Patrick in the circle without me because had he been tagged, his backpack would have kept him from running… But I couldn’t keep the backpack and stand behind him because then there was a very good chance that the kids would trip on the tubes. Sitting inside the circle would have put me in front of his face to distract him from the group activity, and because I was sitting behind him, he didn’t even get tapped by the kids as they went around.

The final straw was that every time a kid was tagged, the group with cheer, as they should. But Patrick doesn’t do well with spontaneous yelling. He doesn’t understand it… and his sensory system doesn’t like the loud noise. He was terrified. And so I pulled him out. We played with the adults in the room instead. He tried going back for a pass-the-balloon game which went a bit better, but still it was too loud and unpredictable.

At last, we decided to call it quits.

I was really afraid of how this would translate into Sundays. Would he be afraid and left out every week?

Well, Patrick’s first day of Sunbeams I got him up and dressed on time for a new early schedule at church. We were a little late arriving, but made it nonetheless. All morning long, we talked about “Big Boy Primary” and he was pretty excited about “Mermerry” by the time Sacrament Meeting was over.

I took him into the primary room and showed him a chair. I gave the teachers a few last pointers, then kissed him goodbye. The other boy in his class came in, but was afraid to stay without his parents and was crying. Patrick did what he always does when a friend is crying.. he tried to comfort him.

And so I left him.

And they didn’t ever come for help. He did fine! He enjoyed it! He was proud of himself! He was even wearing a little paper headband… He NEVER leaves things on his head.

And he still loves to go every week.

I’m sure he’s not doing what the other kids do. But he is still enjoying it.

Because Patrick may not talk or play like his peers. But knows a few things about Heavenly Father’s love. He loves everything to do with Him and Jesus and scriptures and the gospel.

And that doesn’t mean all my worries are gone, but it does mean he’s going to be ok.

Because Jesus wants Patrick for a “BEAM BEAM!” And so far, Patrick loves Primary.

Sometimes Patrick’s medical needs require sacrifices. For the week between Christmas and New Years’, Brian’s brother rented a beach house for the family in North Carolina. The idea was that the family could have a vacation together for a week, and then at the end of that week, Brian’s niece Emma would be baptized.

Well, for us there were two problems with the plan. 1) North Carolina is on the other side of the country and travelling there meant putting Patrick’s transplant listing on hold and make a whole heck of a lot of preparations to get through that long of a flight. 2) We’d already scheduled Patrick’s transplant checkup for January 4th, meaning two back to back weeks of travel for a kid who is usually sick to his stomach after just a few days away from home.

In the end, we sacrificed. Brian skipped the beach house and flew to NC just for the baptism and a few days with his brother. Patrick and I stayed home. Then, we all flew to Seattle for Patrick’s appointment.

So what do Patrick and I do when we are at home without Daddy for a few days, including a holiday? Well, first of all I made one big batch of a meal I can stand eating for a few days because eating is NOT high on Patrick’s priority list and it’s good to devote as little time as possible to that necessity.

Then, this time, we inflated Patrick’s new air mattress and put it in the living room so we could play and walk on it and generally get to love it before we needed it to travel.

We played with all of Patrick’s Christmas toys over and over again.

Then we cleaned up Christmas, decorations and all, so we could come home to a clean house.

We took Patrick’s cousins to the zoo. That a pretty fun adventure. Patrick loved having his cousin in his wagon with him. His cousin loved the snakes, which was a surprise to all of us, as she is usually such a girly girl.

We video chatted with Daddy most nights, which is made a little bit of extra fun because Patrick loves to strut and make faces and act silly when he can see himself on the computer screen.

We celebrated the New Year with my family.. grandma, mom, dad, aunts, sisters. They chose to have mexican for dinner, meaning Patrick got tortillas, and so he was happy. Then we went to bed late, even though it was only 10 p.m. And woke up early for church, which deserves it’s own post.

And then, when all was said and done, we called in reinforcements from my sister and did my best to clean and pack before it was time to fly to Seattle. Which also deserves it’s own post.

And that’s what we did while daddy was away to round off 2011.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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