Thursday, April 26, 2012

How to Interact with Collin

You might not think it, considering that he is one of the most loving, laid-back, joyful individuals you'll ever meet, but it can be very intimidating to interact with Collin.

What if you do something wrong? What if he ignores you? How do you even start to interact with someone who, at first glance, doesn't seem to interact?

Having Collin in my life has opened my eyes to how much of adults' interaction with children is really about ourselves: the cute things they say and do to make us laugh, the way they look at us when they talk to us, the thrill of getting a hug or kiss. A lot of what makes kids fun is the way they make us feel when they are happy/cute/adoring.

But what does that mean for a kid who can't look at you? Who can't hug or kiss you? Who doesn't play in the same way as other kids and can't answer you in a way you can understand?

It just means that you need some help in adjusting your kid skills. These are some things I've learned both through my own extensive Collin experience and through watching other people being awesome with him.

1. Get where he can see you.
Collin can't see in the same way you and I can see. His brain has trouble processing what his eyes pick up, so his vision is inconsistent and hard to use. But there are some places where it is better than others - namely, close. If you want Collin to see you, get your face about arm's length from his face (that's his arm, not yours). That's your best bet for some eye contact with Collin, and it is a sure-fire way to get his attention. He might be looking at you out of the corner of his eye, or he might look toward you only every once in a while, but you can be darn sure that he knows you're there.

2. Keep it calm. (At least at first.)
Don't make sudden moves. Because he can't see, sudden movements are just that - movements. He doesn't know that you're just scratching your nose - he just sees your hand (sort of) sweep in from out of nowhere toward his face and he thinks he needs to protect himself. I regularly freak him out by giving him kisses without warning (that's okay, because I'm his mom, but I am trying to get better about it.) Also, don't make scary noises or talk too loud. His hearing is excellent and loud, sudden things scare the crap out of him. (He had a flip-out crying fit at a certain nail-biter of a U of L game not long ago from all of the sudden cheering.) These two things are why other kids can be really tough on Collin. They are super unpredictable and he doesn't know how to keep track of them, much less understand them or protect himself from them. BUT, the better you get to know Collin, the more leeway you'll have. Even though it might seem like a contradiction, when he feels safe he LOVES to bounce, shake, and swing, and he LOVES gross or weird noises.

3. Talk to him. 
Believe me on this: there is nothing quite like having Collin listen to you. This is a boy who makes you feel like what you are saying is important. We still don't know how much he understands, but I'm telling you - it is uncanny how intently he listens when you talk to him. After getting the hang of the first two steps, just talk. Tell him anything. Ask him questions. Recite the ABC's (that's a major favorite). Sing a song. You will have a rapt audience and nothing makes you feel more like you've made a friend than finding someone who really wants to hear what you have to say.

4. Hold him.
Yes, friends. You really can hold Collin. All you have to do is ask. If there is some reason why it won't work, we'll explain, but there aren't many of those situations. We just don't go around asking people if they want to hold Collin. For one thing, it just feels weird to do that unless you're offering a newborn; and for another, some people might really not feel comfortable. But if you do feel comfortable and have the chance, I highly recommend holding him. It puts you in perfect position to talk to him and it really helps you to get more in touch with how his body works. I think Collin's super low tone is scary to some people in the same way it is scary to hold an infant. But holding him sitting down is a good step toward holding him in other situations.

5. Give him time.
Like a lot of kids (and adults, I guess), Collin is cautious about new things. He just has a few more obstacles than the rest of us that keep new things from becoming familiar. It does happen eventually, though. So, if you're new in his life, talk to him about that. And just enjoy the process of getting to know Collin and watching him get to know you. Likewise, give him time in your conversation with him. If you ask him a question, give him time and be okay with the silence. Because he seems to be more advanced cognitively than physically, we have no way of know if he is thinking an answer but just can't say it.

6. Ask questions.
There are a lot of things about Collin that most people can't just figure out by observing. So know this: you will not hurt anyone's feelings in this family by asking questions about Collin. Provided you're not being a buttface, of course. If you're not sure what Collin is doing or saying, ask. If you're not sure if he's comfy, ask. If you wonder why we have to do something the way we do it, ask. It shows love and interest, and who doesn't like that?

Interestingly, I have found that using some of these new skills with typically-developing kids Collin's age is actually really helpful. It's an entirely different dynamic, but most kids love for you to get down on their level, to be careful around them, to talk to them face to face, etc. It's just one more way that having and knowing Collin has made me better.

Wednesday, April 25, 2012

Sick Kid

I was trying to entertain Collin yesterday afternoon to take his mind off of
 how bad he felt. At one point, I looked over and saw this precious sight.

Somehow, I managed to capture the one time
he has ever smiled during breathing treatment.

Tuesday, April 24, 2012

New Equipment Galore

Following a fun and busy weekend with friends, we shot up to the farm Sunday for an evening of rest before Collin's quarterly NACD evaluation Monday morning. Bob liked what he saw with Collin and was very understanding when I shared that I've been feeling a bit overwhelmed by the scope of Collin's program recently. His solution was to focus on Collin's walking and crawling during the week. This will involve lots of use of his new TAOS, which we will be picking up next week, and of a new slide with hand and foot holes that he will use to push/pull himself forward. On the weekends, we will put aside the rest of his program and focus primarily on Collin's face and mouth, with the goal of making some more marked improvement in his awareness and use of both. I feel really good about this new direction and am ready to get going!

After our NACD meeting, we squeezed in a visit with a wonderful respiratory therapist in northern Kentucky who helped us work through some issues we've been having with Collin's BiPap. Namely, that he isn't using it. We got the machine last year after our sleep study at Cincinnati Children's, and though Collin did fine with just the mask on his face, he seemed scared to death when the machine was actually on. We tried a few things and then finally shelved the idea for a while and reverted to using his nightly quarter liter of oxygen. But then when we recently got a pulse ox for our house and started analyzing the data we collected with it, we found that Collin's central sleep apnea is still causing him to have desats at night. They are fewer and less severe than without the oxygen, but it was enough to motivate us to get serious about BiPap, which would (theoretically) eliminate any apnic spells since it uses pressure to give a breath when needed. The therapist had found the first BiPAP mask designed specifically for pediatrics and with a short trial, we could tell a HUGE difference in Collin's tolerance of the whole experience. After a short scuffle with insurance, we took our awesome new mask and headed home.

On the way, Collin's voice started to sound hoarse. We assumed that the BiPap trial had irritated his vocal cords, but as he grew increasingly agitated and even started crying (a rarity for C), we realized something was going on. He started getting junky before bedtime and by this morning was already struggling to breathe through the congestion in his chest. He was a sick boy and getting sicker quickly. We got in with our (amazing!) pediatrician by 10am and left 45 minutes later with prescriptions for steroids, antibiotics, and breathing treatments. What had started out (yesterday!) as an upper respiratory infection had already turned into a bronchial infection and was causing airway constriction that made Collin wheeze and work too hard to breathe. This kind of reaction is fairly common in children under five years old because of their immature respiratory systems, but the severity and the necessity for aggressive treatment were because of Collin's low muscle tone, which makes his airway floppier and prevents him from clearing it as well as other kids because he can't cough easily. He is also at much higher risk for pneumonia, which is the reason for the antibiotics. The first breathing treatment was a loud one (Collin screaming and crying while I tried to sing "Old MacDonald" over him), but the second was better and he is already sounding a little less distressed.

So we've had an eventful couple of days around here. We've canceled everything for the rest of the week to allow time for healing for Collin and to hopefully keep Mama rested enough to avoid getting this nasty bug.

If I can get myself together (and that's a big "if," people), I'll post some pictures with his cute little fish-decorated breathing treatment mask on.

Thursday, April 19, 2012

My New Favorite-Picture-Ever

I laugh like an idiot every time I see that picture.

He really does love Ila. Just not her smooches. 

Tuesday, April 17, 2012

Food, Glorious Food!

Lots of people are curious about what is in Collin's ketogenic blenderized meals and have expressed interest in the particulars of making them, so here you go, folks! How to Make Collin's Food: The Photo Essay.

Start by calculating recipes for each meal using the Ketocalculator program. We make 2 different meals at a time to provide more variety in Collin's diet.

I write down how many grams of each ingredient will go in each meal, then add everything up (plus 2g for supplements and 20g for water) so I know how much to measure in each meal jar.

The supplies for one batch of meals. Each batch is 10 meals or 2 1/2 days.

The supplies for the second batch wait on another counter.

Measure out supplements, starting with Branched Chain Amino Acids. We're at 17g per batch now.

Low carb dietary fiber: 15g/batch.

Carb-free multivitamin: 5 scoops/batch.

Prepare the food. Start with melting coconut oil for easy measurement & blending.

Today I needed to steam broccoli and scramble eggs (with no butter, oil, or other additives).

Start measuring. I multiply the number in the recipe by ten and then try to get the final measurement within one gram of that number. 15g peaches/meal = 150.7 g/batch.

Slice & measure apple.

Collin's meals are predominantly fat (3 1/2 units of fat for every 1 unit of carb & protein combined).  He gets about half of his fat from extra virgin olive oil. 

I add about 20g of water per meal to get it to the right consistency for the g-tube.

Add the pre-measured supplements.

Measure and add the egg.

The other half of his fat comes from coconut oil.

Every drop & scrap of ingredient has to go in in order to maintain the correct ratio. Some people like to use a small spatula, but I find that nothing works better than a finger.

Here's the final concoction in the Vitamix (no ordinary blender could handle this - Vitamix is a great company and offers nice medical discounts on their awesome machines). Collin likes to supervise to make sure I don't mess up.

Once blended, I pour the mixture into individual meal jars.

Just like with ingredients, I keep the final measurement of the meal within 1g of the target (79g in this case). This sometimes involves scooping out when I overshoot.

I usually have to use a soft spatula to get the last few grams of food for the last meal in a batch.

On to the second batch! Here is a faster version.

Olive oil.

Salmon (already baked for today).





Coconut oil.

Blend and measure meals. The measuring is the final check to make sure you did everything right, which I did not in this case. When I got to the end of measuring, I realized that I had way more left than I should, so I went back and checked all of my steps and realized that I added incorrectly on my recipe sheet. This meal should have totaled 72g instead of 62g. It was a pretty minor mistake compared to some I've made - I just added 10 g to each jar.

5 days of nutritious, seizure-fighting, g-tube meals!

Tuesday, April 10, 2012

State of the Collin

My blogging has been miserable lately, which nearly always results in an enumerated list.

1. Iron - We're up to full dose right now and other than one suppository at the beginning, we've been managing things well in the poop department with diet and a strategic dose of Miralax. He does seem to be a little nauseous in the morning, but it's not severe and there's nothing I can do about it anyway. We have at least another month before we will recheck his blood levels and see whether we can come off of this wretched stuff.

2. TAOS - It's been a longer-than-I-expected process (which is what I expected), but Collin's custom-built TAOS should be completed in the next day or so and sent to Paducah, where we will go sometime in the next few weeks for the final fitting (HERE WE COME, HOLLANDS!).

3. Easter - We went to the farm late last week for early-Easter-slash-Grandad's-birthday. It looks quite different than we first visited after the tornado. Most of the demolition and hauling-away is done and the rebuilding process is just starting. We mostly relaxed and took walks and had good food. Collin went on his first Easter egg hunt (with Ila, of course). I won't lie, it's hard doing things like that. Collin can't see the eggs, he can't walk to the eggs, he can't pick up the eggs, and he can't put the eggs in his basket. So there is a part of me that is sad to hunt Easter eggs because of everything it means. But then there is another part of me that is thankful and happy that Collin takes joy in so many small things and that we are able to help him participate in the things he can't do himself. So that part of me patted the other part of me on the back and said, "Come on, it's okay," and we pushed Collin around the yard in his stroller and stopped at the eggs, picked them up for him, put them in his hands, talked about the feel and the color, and helped him put them in his basket. He loved it. I have no idea how much he got out of what we were doing, but he did love it.  We continued the egg-hunting fun when our dear friends the Jacksons came over to our house on Easter Day to celebrate with us. Here are some pictures to prove how much fun we had all weekend.

4. Big Boy - Since our last calorie increase, Collin has gained two pounds and another inch. I have consequently started a functional workout routine and chiropractic treatment. Take a gander at how huge he looks in this new chair we're borrowing from Ms. Melody.

5. Upcoming: Next week, we have two nerve-wracking meetings in a row - reevaluation for the Michelle P waiver and an appeal hearing with Medicaid over denial of coverage for Collin's growth hormone. Collin's spring NACD evaluation is also coming up, and then our next appointment with Dr. Awesome. Never a dull moment!