Teddy Eating: Guess What, I have a good handle on it.

Conditions that must be present for Teddy to eat:
– Food he can handle
– A calm environment
– An environment without pressure
– A distraction
– No interruptions

Take one of these away, no eating.

I’m working on eating when away from home. It’s a struggle. Consider your typical gathering with several families eating a meal. You have:

  • Lots of noise
  • pressure to eat (eating is expected)
  • A NOT calm environment
  • Lots of interruptions

I can usually manage at larger gatherings for meals if I can take him into a different room with just us and his Kindle, if I can ward others off.

But otherwise, eating just isn’t going to happen. And that’s frustrating. It’s a skill I’m working on with him. I don’t make a big deal out of it. I don’t demand everyone adjust their lives to suit him – that isn’t very realistic. I see how he does with everyone in the same room, and if that isn’t working, I see if I can move him somewhere else quieter and with fewer interruptions/bad distractions.

Do I wish he didn’t have these requirements? Sure. I wish he would just eat like a regular kid. But wishing doesn’t make it happen, unfortunately.


Disaster Planning for Special Needs Families, part 3

Now let’s talk about PLANS.

First. This first bit is general stuff for any family. Now, while there is no emergency, think through four places you can go and meet up with others in your family. Think of one location in your neighborhood. Another location outside of your neighborhood but in your town. Another location outside of your town/vicinity but in your state. And another location outside your state. Friends’ or family members’ houses are ideal, but nearly any place will work. Obviously, you will want to choose locations based on how they may be able to accommodate your special needs. Planning to meet up at Aunt Susie’s place isn’t a great plan if your family member uses a wheelchair if Aunt Susie lives in a 5th floor walkup apartment.

Communicate all of these places with everyone in your family. In the event there is an emergency and you are unable to communicate with others in your family, you just follow the plan. If the emergency affects just your house, you know to meet up at your neighborhood spot. If the emergency affects your neighborhood, you know to meet up at your town spot. If the emergency is more widespread, you meet up at one of the other locations.

Now, here’s the special needs part. Think through ANY special considerations involving your special needs family member. What if your family member uses a wheelchair, but the family member who isn’t at home has the accessible van? What if you anticipate that your family member would melt down if an evacuation were necessary? What if your family member has severe anxiety about leaving the house? How will you handle these things? Have a plan NOW so you don’t have to come up with one on the fly.

Bonus points: write down these plans and put them in your binder.


Second. Communications. In many emergencies, local communications can quickly become overwhelmed. But sometimes, though you can’t connect a call across town, you can still call out of your area. Establish a friend or family member who doesn’t live in your area who can serve as a communications hub for your family. Then have everyone MEMORIZE this number.   Also: write it in your binder.


Third. Predicted Emergencies. In the event of any sort of predicted emergency (hurricane, civil unrest, major ice storm), remember that your family is not like other families. Your family has special considerations. Think through those special considerations NOW.

For example, in my family, if there was a major ice storm predicted, or if we lived in an area expecting flooding, I’d need to check to make sure we have enough medication on-hand and, if not, contact the pharmacy and ask them to work it out with the insurance company to let us refill early just in case.

When Teddy was on dialysis, we knew we’d need to report to the hospital (2 hours away) in the event of any major power loss, which might have meant that we’d plan to travel sooner rather than later if a major winter storm was predicted.

If your special needs family member is dependent upon electricity to survive, maybe you need to think about installing a generator (and keeping sufficient fuel safely stored). Or perhaps you need to consider evacuating your home to someplace with more stable power in advance of any predicted emergency. (For example, many families in Orlando move into Disney hotels during hurricanes.)

Sometimes, the best course of action for a special needs family is to get out of dodge sooner rather than later. This is a VERY tough call to make, but if you have some place you can go, and you can get there without too much hassle, it might just be best to get out before the emergency hits.

Look at Harvey – I absolutely understand why people didn’t evacuate, and I think that, all things considered, it was the best decision for most people, even though it didn’t work out so great in retrospect. But families with special considerations might have decided to leave a few days in advance of the storm – just in case. Is this always going to be possible? No. But if it is possible… maybe it’s best to go.

I read a story about having to rescue several dozen pediatric dialysis patients from their homes for dialysis before not getting dialysis killed any of them – the national guard and coast guard helicoptered them to the hospital. I’ve had friends get stuck at home in snow and ice storms and start to panic about getting their kids dialysis. And I get it – I’m not judging those families, at all. I can’t say I’d have done anything different (of course, we were already IN the hospital for the vast majority of Teddy’s days on dialysis…). Making the decision to leave is HARD, and it seems SO silly when nobody else is leaving, and when there may not even be a storm, and even if there is, it probably won’t be that bad. But, if possible, getting out early might be the easiest course of action when it all comes down to it.

I’d sure as heck rather be laughing at my very cautious self while spending a few days with an out of town friend than be stuck in my home in a panic about my special needs family member.

Disaster Planning for Special Needs Families, part 2

Now let’s talk about… THINGS

Get out some paper. At the top of one page, write, “Things Needed To Stay Alive.” Take a minute and write down all the things your special needs family member needs in order to stay alive that go beyond everyday needs. (For example, if your family member eats orally and can eat relatively normal foods, you don’t need to write this down.) Our list includes medications, feeding pump supplies, and baby food for the tube. (He gets a blended diet at home, but access to fresh fruits and meats plus a quality blender, cooking supplies, etc., seems a bit much to manage during an emergency, so we plan to fall back on baby food.)  Perhaps your family member needs a ventilator, or a CPAP, or catheters.

On another page, write “Things Needed To Function Well.” On this page, write down everything that your special needs family member won’t actually die without, but that will make everything go more smoothly. Our list includes a few special toys, a weighted blanket, playdough (portable and helps keep his hands from being destructive), and the kindle/charger. Perhaps your family member needs a nightlight, or a particular “thing” that soothes them. Or maybe you don’t *NEED* a piece of medical equipment to survive, but having it would be better than not having it – I have our manual blood pressure cuff on this list, as well. His pressures are stable enough that during an emergency, I could probably get by without it, but I’d feel better having it.

Now, look at list #1. Can you make a “go kit” for your special needs person that includes these items? Chances are good that you can include SOME, but not all. I can put feeding pump supplies and syringes into a bag, but I can’t pack away the pump or his meds. Pack 10 days’ worth of whatever items you CAN pack away into a special (roomy) bag that is used JUST for this purpose

Then, type up what is left on your two lists – start with “needed to live,” and move on to “would be nice.” Include quantities for what you’d need for ten days. Type “IN CASE OF EMERGENCY” at the top. Print this list in a largeish font size. Attach this list (laminate it if you can) to your bag.

Note that I say TEN days here. The people at ready.gov recommend that “go bags” have three days of supplies. But your special needs family member *requires these things to survive* and also *you can’t usually buy replacements or easily acquire them at shelters.*

I know you think you’ll remember this stuff. But sometimes in the press of a major disaster, things you think you will remember go right out the window. You’ve already done all the thinking now, when you’re calm. During the emergency, just look at the bag, start at the top, and fill it with what’s on your list.

(Then consider making more general “go bags” for everyone in your family, with clothes, food, and supplies for 3 days.)


Disaster Planning For Special Needs Families

Disaster planning is something EVERY family should do. EVERY FAMILY. This isn’t just for preppers. Have a plan for when something goes wrong. Here. https://www.ready.gov/make-a-plan

Special/Medical needs families have an even more pressing need to have a WRITTEN and UPDATED disaster plan. Because we need things you can’t buy in stores. We need things that the Red Cross won’t have. Sometimes, our kids will die if we don’t have the right things.

I’m going to walk you through three parts of disaster planning here, with special needs families in mind:
1. Papers
2. Things
3. Plans

Today’s installment… papers.

BUT let’s first talk about what a disaster is. A disaster could be a hurricane. Or a wildfire. Or an F5 tornado. Or an Earthquake. A chemical spill. Could be a housefire. Or leaking gas pipe in your home. Civil unrest. A car accident 100 miles from home. A large political crisis that impacts transportation (like 9/11 or a nationwide trucking issue).

But when we’re making disaster plans, we’re preparing for the WORST. If you have plans for the worst-case scenario, scaling those plans back to accommodate smaller scale disasters is easy.

So, STEP ONE. Think of the worst disaster you are likely to encounter in your area. Where I live, I rank large scale tornado as the MOST likely scenario.

Now, let’s talk…


Yes, with our fancy electronic gadgets, we hardly ever need paper any more. But if you’ve evacuated your home and are stuck somewhere with no internet or no power, you might want some paper copies of important documents. Consult Ready.gov or other blogs and resources for general paperwork needs, but for special needs families, you’ll want:
– Copies of insurance cards
– Printed out list of current medications and supplies (with Ref numbers if applicable)
– Printed out list of current diagnoses
– Doctors’ names and phone numbers. Yes, you probably have these memorized, but you’ll want them on paper also because, well, what if you’re not available?
– A mind dump of things that are important for others to know about your special needs family member, organized by topic.   “Sleep. X sleeps only when in a dark room with white noise and a weighted blanket.”  “Eating. X can only eat the following textures.”  Because, again, what if you aren’t there?
– Anything else you can think of that is unique to your situation that might be nice to have on paper.

Now, what to do with these papers? Buy yourself a three-ring binder and a pencil pouch. Print all this stuff out, three-hole punch it, and keep it in the binder, along with some loose-leaf paper and a few pencils in the pencil pouch. Label it clearly. Show it to everyone who is involved in your special needs family member’s life, and show them where you keep it. Keep it somewhere handy and accessible. I keep ours near our back exit. You might decide to keep yours with the rest of your medical supplies.

And, this is important, REFUSE TO FEEL SILLY ABOUT THIS. This isn’t silly. This is smart. Smart families plan ahead, and this is even more important when you have someone in your family who isn’t typical.

Add one thing, Take something else away

And here we have an examination of the real limits of a human being. Doctors who are reading this, pay attention.

Teddy’s had a few UTIs lately. (And I still don’t think we’ve solved that entire problem, but that’s a mystery for another day. Another day soon, but nonetheless, another day.)

The first line defense here is to put him on a pee schedule. He’s to pee every 2 hours.

Every 2 hours at my house, this happens.

Teddy, please go pee!
—  Who is coming over? (because I always have him pee if we’re expecting company)
Nobody, it’s just time to pee.
— Where are we going?
Nowhere, please just go pee.
— I don’t want to!
OK, well, it’s time to pee. Please go pee.
— Maybe later. (This is Teddy’s way of saying no without getting in trouble)
Teddy. GO PEE.
— I already peed! (meaning, he already peed in his lifetime)

I’m not exaggerating. Every 2 hours. He hates it (because who would love being interrupted every 2 hours to pee?). I hate it.

PS, I didn’t ask them if they wanted me to wake him overnight to pee. I was afraid they’d say yes and that would break me.

I also have to constantly be after him to drink. He still spills cups unless it’s meal time, and he has trouble drinking out of various larger containers, so we still use a toddler-size sippy cup. I have to refill that sucker 10 times a day and then nag him to drink it. All. Day. Long. I hate it. He hates it. (And I still have to give him water overnight for the summer, lol.)

I also have to provide pretty much 24/7 supervision. Teddy cannot be left unsupervised. And yet he’s old enough to realize that just hanging out wherever mom needs to do stuff isn’t fun.

And then there’s eating. He still doesn’t really eat. What he does eat, I have to feed him. It can take an hour or more to eat a small portion of something. He does eat some foods on his own (chips with dip, which he would eat all day long, goldfish crackers, sometimes graham crackers, and occasionally yogurt) but anything that might be considered, you know, FOOD, no.

So this eats up basically my entire day. I mean, there’s also meds. Blood pressure. Regular kid stuff like baths and getting dressed. Running a home. Homeschooling. Taking care of the other two kids. Feeding myself. Occasionally doing something I actually want to do.

Oh, and he never sleeps. Still.

And I am just at my limit. I can’t add every 2 hour pee breaks to my already long list of crap I have to do all day every day. (Doctors: moms are just human. You say you want us to take care of ourselves, then don’t criticize us when we do it. You cannot just keep adding things and adding things and adding things without breaking the person you’re adding them to.)

So we decided to cut something out. And since the pee breaks and the water keep the kidney happy, but we have an easy alternative to the eating… we are dropping that for the summer.

And I feel really good about it.

His eating was going pretty good until his last admission, when he stopped eating entirely for several weeks, then started eating only a few crackers a day, and lost 5+ pounds. We’ve been clawing our way back since then, but he’s still not eating the variety of foods he was eating before, and he’s not eating as eagerly, and he’s not eating as much. And I’m tired of it being a thing.

It feels like when you really want your kid to start reading (or understanding multiplication) and so you push and push and they just don’t get it. If you drop it entirely for a few months and try again, sometimes it clicks the next time. (If not, drop it and pick it up again later.)

Maybe when we pick it up again, it’ll have clicked. In the meantime, I’m letting him have chips as snacks, but I’m not letting him eat them all day. He gets served food with the rest of us, or any time he says he’s hungry, and he either eats it or he doesn’t. If he doesn’t, whatever. It (or something else) goes in his tube. I’m not really willing to blend food all day long, so I don’t just blend up whatever we’re eating for him, but I’m using baby food packets now and will make a few blends next week or so, and it’s fine.

I don’t mind going back to blending and I’m good with not having “Feeding Teddy/nagging Teddy to chew with his teeth/Reminding Teddy to swallow/Spending 20 minutes trying to get Teddy to swallow/Developing new therapy methods on the fly to help him swallow/dealing with Teddy’s fear of most foods/firmly insisting Teddy at least lick the food” be on my to-do list 3-4 times a day.

You know, most kids have started eating full time by now after a transplant. Teddy’s not.

I won’t say I’m not disappointed, because I am. Everyone with a baby who needs a kidney transplant looks forward to life being at least fairly normal within a few years of transplant (I mean normal besides labs, clinics, and the constant worry about impending rejection and cancer). But whatever. This is small potatoes, and it’s something we’re familiar with.

Why not give up on the water, and just do the water overnight and stay focused on eating orally? Well, two reasons. a) he drinks willingly, he just doesn’t think of it on his own.  b) that will NOT help the UTI problem.  c) giving him ALL of his water overnight means going back to changing diapers a few times at night. No thanks.

And before you comment or whisper among yourselves – yes, he’s in feeding therapy. His therapist is awesome. She wasn’t surprised he stopped eating during his last hospital stay and she isn’t surprised that he’s taking the long road back to where he was. I haven’t told her our plan (we haven’t seen her for over a month, just with weird schedule things), but I suspect she’ll wish that we would keep at it with the feeding him. And that’s fine, because she only sees that part of the picture.

Another Evaluation, more puzzle pieces

Well, April saw us visiting ChildServe again (and remembering why we don’t like that place, lol) for another evaluation. I decided I wanted to see what a new set of eyes would say about what’s going on with him. I don’t want to get into everything, but Teddy just has a hard time with life in general and I don’t feel like we have enough pieces of the puzzle to really help him get a leg up.

So. They don’t feel that he’s on the autism spectrum, since he chats with adults readily and looks them in the eye. I don’t have the written reports yet, but that’s what they said verbally.

They agreed with the ADHD diagnosis.

They diagnosed him with Unspecified anxiety disorder.

They agree with the expressive/receptive language disorder diagnosis.

Their findings included “lack of coordination,” which isn’t new but is the first time anyone’s really just come out and said it, lol. Generally, he passes gross motor skills tests with flying colors, but they weren’t as impressed.

And they noted that he has retained primitive reflexes, and that addressing that issue might help the above issues plus his general developmental delays.

I’ve done some reading on retained primitive reflexes, but it looks like I’ll be doing some more.

They suggested IQ testing, but I think the neuropsychologist we see in Iowa City will be doing that in July. If not, we can always find someone who isn’t ChildServe to do that for us. I honestly don’t really want to. I’m not emotionally ready to find out we’ve got that working against us, too. But they’re the second or third professionals to suggest we want to have that checked, so… sigh.

They also suggested genetic testing to determine what caused the kidney failure but since none of them know anything about kidney failure, I suggested they stuff it. (I did this in my own head, I did not tell them out loud. Nobody seriously thinks the kidney issues might have a genetic cause. There is no Syndrome that causes a different defect in each kidney.)

CMV and Update

I know I haven’t updated in a while.

Teddy’s had an interesting time since Christmas, but everything is OK.

He started getting high, sudden fevers accompanied by lethargy and just general overall “off” ness, but no ill symptoms. No runny nose, cough, etc. Fever + lack of other symptoms = concerning if you’re immune suppressed. The first time, we suspected flu and ran off to the ped for a flu swab. They did urine culture and RSV and strep, also. Urine came back with white cells, so we did an antibiotic injection and a 10 day course of abx. Ultimately, the urine only grew a common skin flora, which is usually just a contaminant, and nobody ended up thinking he actually had a UTI.

5 days after finishing the abx, he had another high fever (104/105). Back to ped’s office. Same tests. Nothing. Ended up getting admitted to figure out what was going on. Stayed for 4 days, did all the tests. He ended up testing positive for a GI bacteria, though he didn’t have the symptoms of a GI bug. (He did have some diarrhea, but it only started after he started the heavy duty IV antibiotics.) We treated for that. Evidently, his urine grew the same skin flora.

5 days after finishing the abx, another fever. Another ped visit. More tests. Urine grew the same thing. Someone finally says, hey, maybe this isn’t a contaminant. Did another urine culture after being sure to clean him REALLY REALLY WELL, and it grew the same thing.  Treated that, no more fevers.

After the first fever, we also ran all the “you have had a transplant and you have a fever” blood tests, which includes the three viruses that we monitor. (CMV, BK, and EBV.)  The CMV came back quite high. He’s had elevated CMV before that was no big deal, but this time it was REALLY ELEVATED. So I spent a Saturday driving to Iowa City to pick up the really expensive drugs to treat that. But this complicated the whole “what is wrong with him” situation, because CMV also suppresses the immune system (meaning that it leaves you even more vulnerable to lots of horrible stuff), and then CMV itself and ALSO the drug that treats it both suppress your bone marrow. So his hemoglobin dropped like a stone. So the CMV plus the fever plus no symptoms had the doctors quite concerned, but I think it turned out to be JUST the UTI plus the CMV.

Took a few months, but we got the CMV back under control. As of the last time we got labs (2 weeks ago), the CMV was back down to 0. We have to treat it for another 3 months and then we can finally drop that drug.

In the meantime, all the ick meant Teddy stopped eating and drinking. It’s been about 2 months and he’s finally back to drinking as much as he needs to orally now, but we’re still climbing out of the ditch when it comes to eating. Last week, I got him to eat cheese and one serving of oatmeal. This week, he’s has macaroni and cheese twice. But otherwise, he’s devolved back to eating just chips, which isn’t exactly the foundation of a healthy diet.

So there you go.