Pears

This is a HUGE step for Sam since he hasn't eaten food in months! He'll lick chips, pretzels, and cheetos but he never swallows anything. For the last three weeks I've been sitting him down at the table three times a day with the same one food in front of him - pears. He started out by dipping his pointer finger in the pears, then we progressed from the finger dip to the lips. He would rub the pears on his lips like lip balm and say, "Mmmm." He's a really good fake eater. Finally he is actually opening his mouth to taste. Also, he took three sips of juice on Friday. Woot woot!!!! Sadly, the next morning he woke up with a terrible rash all over his body... probably the passion fruit. We finally find something he likes and he's allergic to it. He's getting better all the time though.

Group Hug

from left to right: Horton, Samuel, Rrrrroarbert, Bartholomeu

More Photo Dump

Quick Pics

Yesssssah!!!!

We're so pleased.

Spring Photo Shoot

Overall, Sam did a fantastic job of smiling for the camera. In the end, I think he rather liked it.

Hold Me

Sam Likes...

reading books

typewriters

wagon rides

window gazing

Thomas the tank engine

using no hands

Horton the elephant

Hospitalized

On Friday Ashton took Sam to the doctor. Dr. Ralston is a great doctor. He checked Sam out and ordered some blood work and a viral panel. We went to the suction shack too and got Sam’s throat all cleaned out. We went home after that and shortly after got a call from Dr. Ralston, saying we needed to go to the emergency room because Sam’s potassium levels were dangerously low. Sam had thrown up too much and we weren’t able to replenish his potassium by g-tube, so he needed IV fluids.

It was already 7:00 at night when Dr. Ralston called, so it promised to be a long night. We went to the emergency room and it was packed. There were so many babies there, and I’d bet most of them had RSV. It took an hour and a half before we got a room. The whole time we were waiting Sam was moaning/crying because he wanted water. We couldn’t give it to him though because he would just throw it up, as he displayed in the ER waiting room. Once we got back to our room we put on Fantastic Mr. Fox for Sam on my laptop, which distracted him a little from his thirst, and waited to be seen.

Just our luck, we got a nurse practitioner. As soon as the words came out of her mouth I wanted to roll my eyes and throw my hands up in the air. She came in to take a medical history, and she actually told me to stop and slow down. We tried to help her understand the situation, but she didn’t seem to be figuring it out, until her supervising physician, Dr. Nelson, came in. He knew who we were because Dr. Ralston had called ahead, so he was able to expedite things. We needed an IV put in and blood work to establish the potassium baseline.

A nurse and tech came in to put in the IV. The tech was named Hailey Robinson, and apparently she pseudo-dated Seth freshman year. She tortured Sam trying to get the IV in, and he didn’t give much blood because he was so dehydrated. His potassium levels came back higher than earlier in the day, which should’ve been a comfort, but we knew it was probably because they had to really wring the blood out of Sam’s hand. Hemolysis will give you a false potassium spike. The NP didn’t seem too concerned. She did have one good idea though: pebbled ice.

Pebbled ice is Sam’s new favorite thing. He just sat there sucking on it, reaching for more like it was a bucket of popcorn. It definitely helped with the thirst issues without making him throw up again. They finally got the IV started too, which also helped get him rehydrated.

Around 10:00 ish we asked the nurse what the results for the viral panel were. She looked at us all confused and said, “Did we order a viral panel?” We’d already told her he’d been tested for RSV earlier that day, but we were still waiting on the results. We told her again and she pulled up the results: he tested positive for RSV. I asked her if we could check his oxygen sats. She asked what they were when we came in. I informed her that no one ever checked them. She seemed surprised. Hailey the tech came back in to check Sam’s oxygen. It was 94%. I asked Hailey if we could keep the pulse oximeter on, just in case. She said that was fine.

It took Sam forever to fall asleep. He just moaned and moaned, crying out for water, which for some reason he’s been calling “Mama.” I think he’s got it confused with wa-wa (which he sometimes says). I sat by his bed most of the night putting ice cubes in his mouth until he finally fell asleep around 11:30.

At this time his oxygen sats dropped to about 85. The machine started beeping as soon as he dropped below 90, and I was very glad I asked to keep the pulse oximeter on. Eventually a nurse came in to put a cannula on Sam to give him oxygen. He was so tired he didn’t even notice. His oxygen shot up to 97 pretty fast. The nurse informed us that we’d have to be admitted since he required oxygen, but at the moment there weren’t any free rooms available. We’d have to wait some more.

We couldn’t really sleep, but I tried many positions in my chair in an attempt to. Finally a room opened up, and a senior resident came in to get the basic story so Sam could be admitted to the hospital. He was kind of flamboyant, but a very sharp doc. He actually picked up on Sam’s heart murmur, which always impresses me (only two other docs have noticed). He told us a younger resident would be coming in later to get the full story.

Around 2:30 the second resident came in, and he flipped on the lights. Right off the bat I was annoyed. I covered Sam up with a blanket so we wouldn’t wake up with the bright lights. The resident was probably nervous and definitely newer. He had spent a long time going over Sam’s past medical history, and he wanted to know everything. He would be in charge of writing up the nursing orders for Sam, so he had to know every detail, even when it probably really wasn’t necessary. Then he had to do a physical exam on Sam, which really ticked Sam off. He spent forever trying to look in Sam’s mouth, but Sam wouldn’t let him. Sam just cried and cried and finally we were like, “Dude, I don’t think it’s going to happen.” The resident finally left and Sam went back to bed.

At 4:00 a.m. we were admitted to a proper room. Actually it wasn’t that proper. It was a treatment room that they jury-rigged for us. It felt like a closet. No bathroom and no windows. Just a cage crib and the pull out chair bed thing for one parent. We got Sam all situated and finally got to go to bed. We shared the pull out bed, which was pretty impressive. I bet most couples can’t do that. It did require some good quality spooning, but we were so exhausted that we didn’t care.

We only got to sleep for about an hour before people started coming in to do meds and checks and all that crap. I woke up very cranky because I hadn’t got any sleep, and I didn’t have much patience for anyone. Sam threw up a bunch too, and I nearly lost it.

We had to wait in that closet room for several hours before the attending physician came. Luckily that attending was Dr. Ralston. It’s a very uncommon thing to have your doctor see you at the hospital these days. Dr. Ralston wanted Sam to stay another night so they could monitor his oxygen and make sure his electrolytes stabilized. Dr. Ralston was the first person to come in that didn’t make Sam start crying immediately. Sam really likes him, and so do I. I was in a much better mood after that.

I went home to shower and get new supplies. When I got back Ashton informed me we were moving to a real room down the hall. That was awesome. Sam slept most of the day and did much better on the throwing up. We still had to feed him ice chips mostly or pedialyte by bottle. My family came and visited too, which Sam really enjoyed. He smiled and laughed a lot when they were there, but he looked so miserable still with his nasal cannula and all those wires and tubes. He’d lost his voice from crying so much too.

We stayed the night again, and Sam slept the whole night without oxygen. We had to share the pull-out chair bed again, which wasn’t as good as the previous night because it was for much longer than an hour. Sam’s oxygen sats stayed above 88 the whole night, so the next day someone from the “team” came by and said we’d most likely get to go home. We had to have his blood drawn again for electrolytes, and we suctioned him out a couple times, and we had to wait to talk to Dr. Ralson again (as soon as he came in Sam pointed at him and smiled) and then we got to come home.

Sam was so happy to be home. We gave him a bath and he was really hyper for a while, and we were finally able to get him to go to sleep. We all took a long nap during the day. We’re just really happy and grateful Sam’s doing so much better. He's basically back to his old mischievous self again.

RSV+

It's that time of year.

Sam is loving the ice chips the nurses bring him. I guess we need to get an ice machine. Do you think Regence BCBS will cover that?

The Little Cuss

Sam is a very active sleeper. He doesn’t just roll around. He sits up, flops over and sleeps with his bum in the air. He’s all over the crib. This makes his tube open up sometimes, leaking puddles of formula all over his crib for as many hours as it goes undetected. Sometimes we tape the valve on his tube to prevent this, but lately I’ve been wrapping him in blankets to stop him from moving around so much. I thought this was a good idea too because it keeps him warm.

Last night he got tangled in the blankets and his tubing, and he got so tightly wrapped up that it pulled his g-tube clean out. This didn’t feel too good and he woke up Ashton with his crying at 2:00 a.m. I woke up to Ashton screaming, “Stephen, come in here!” I rubbed the sleep out of my eyes and jumped out of bed with a feeling of intense dread. As I passed through the kitchen on the way to Sam’s room, Ashton yelled, “His G-tube came out!” I started to panic and grabbed my head with disbelief. She told me to get the emergency kit out of the car, so I ran out in my pajamas to get it. We dumped the contents of the kit on Sam’s floor, but there wasn’t a spare G-tube like there was supposed to be. That meant we had to put his old tube back in, praying it wasn’t damaged.

I sucked the water out of the balloon and Ashton held Sam down while I tried frenetically to get the tube back into the hole in Sam’s stomach. It was something out of a nightmare, and in retrospect it almost seems like it didn’t happen. I finally got the tube in the hole on the third try, and reinflated the balloon with water to hold it in place. We put new pajamas on him and he calmed down and went back to sleep.

This morning Sam woke up and it was like it never happened. He was his normal happy self, even a little goofier than normal. We took him into Dr. Rollins’ office to have a nurse check it out, to make sure everything was okay. She helped us replace the G-tube and confirmed that it was in the right place. Sam fought us the entire time, screaming till his eyes were bloodshot, and it took all three of us to get everything hooked up right. And that was that. I probably sound like a dramatic overreacting parent, but we were really freaked out last night. We’re just glad Sam's okay, the little cuss.

Sam Story

LONG LONG

year too long

LONG GONE

goodbye year you stay too long

cousins
and cousins again

Samkins

Sam has a lady friend named Tallinn. She's one year older than him, but he can't be dissuaded.



This is Sam helping wrap Christmas presents.

Sambulu

Growl

This movie is from the day Sam started saying "daddy." We tried to catch it on film but all he would do is growl.

Here is a random selection of photos from the last couple months as well:



Here's "Sam I am" at the ward trunk-or-treat.



Here's Sam first thing in the morning. He always has great bed head, and the first thing he wants to do is read.



Whenever I ask Sam if he wants to go see Tallinn, his two-year old friend next door, he books it to the front door. Puppy love.



This is just a charming photo.

29

Sam is now 29 inches! He had an appointment with Dr. Ralston on Monday (best pediatrician ever) and his growth chart shows him in the 5th percentile for height. We are just stoked that he is back on the growth chart! He hasn't been for the last six months or so. He's still off the chart for weight, at 17 lbs 13 oz., but he has gained about three pounds since he got the g-tube (he's always been at least in the 50th percentile for head size, which with his body size means he's got a HUGE noggin). Dr. Ralston says he is definitely behind on muscle mass, so we're going to start meeting with a physical therapist through Early Intervention to figure out what exercises we can do with him.

He had some X-rays taken a week ago that showed he might have rickets in his wrists, but Dr. Mauch thought the X-rays were poor quality and probably not definitive. We doubt he has rickets anyway because he is supporting his own weight very well while standing, and he's been pulling himself up a lot.

Sam said "kitty" the other day, making it his official second word (after daddy). We got him to say it on film once. Although it's not the best enunciation, it's pretty dang awesome.



I have my suspicions that he's trying to say the word fish too, but it comes out more like "shiss." He says it when he points at Dorian, his goldfish, however.

Cystinosis Research Foundation 2009 Video

Toothbrush

Sam loves brushing his teeth. He actually cries if you take away his toothbrush before he's done with it. This photo is from before his G-tube, so he's a little slimmer, but look at that killer grin!

Sam Meets Hank

On Friday we had the pleasure of a visit from the Sturgis family. Brian and Tricia Sturgis are from Sandpoint, Idaho, and they have a four-year-old, Henry, who also has cystinosis. Ashton got in touch with them by e-mail, and they let us know they were going to be in Utah this weekend visiting some friends. We were stoked to have them over, especially to meet another family who has gone through and is going through the same situation. It was also exciting to see that Sam can still turn out to be a pretty normal kid.



They brought Sam a stuffed lion named Roarbert, which he loves. Sam and Henry took to each other like long lost brothers, and they played all night long. It was great to ask the Sturgis family questions about their experiences, and they gave us very encouraging advice. Even though we were complete strangers when they came, we felt a strong kinship with them before they left. Sam can't wait to see Henry again!



We also purchased a scale over the weekend so we can weigh Sam more often. For some reason he really likes sitting in the scale, and he gets mad if you try to take him out. This week he weighed in at 16 lbs 7 oz. I think most of the weight is going to his face.