WFMW: Getting Kids to Sleep Instead of Play

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This is my first time participating in Works for Me Wednesday, and it’s a good thing that I picked a backwards edition because I need HELP. My son goes to bed by 8p every night after a half hour bedtime routine. Generally speaking, though he doesn’t go to sleep until more like 10p or 11p. Once we’ve left the room, he’s up and playing. He comes out several times to “tell us important things,” and to visit the potty several times. This has been going on for over a year now and I just don’t know what to do. The problem is that I work at night, so I really REALLY need him to go to sleep/stay in his room/stop playing, but I don’t know how. He’s completely afraid of the dark, so we have a low level light on, which facilitates play, but I know he won’t ever sleep without it (and neither will anyone else).

So, what works for you to get kids to sleep at bedtime?

Katie Update

Quickie update. Talked briefly with her pediatrician who is convinced that this is nothing to worry about. Perfectly normal. Logical spot for screws to have been placed. If the areas seem to be getting more pronounced, I should call her surgeon on Monday. But even from last night to today, I can see that they’re a little less pronounced, so I’m not going to worry and let it ride for the moment.

However, I will be calling the neurosurgeon on Monday, anyway, because it dawned on me that I called a MONTH ago to schedule her follow up and they still haven’t called me back. GRRR.

Once we have that one scheduled, I have to schedule her pediatrician appointment and then her follow up eye appointment to check and see what’s going on with the strabismus that was identified last July. For a child who hates doctors with a fiery passion, she sure is going to see a lot of them.

Brief Katie Post

Just so people know, in the I know that some of y’all are following Katie on her journey thing. Apparently the swelling has gone down sufficiently so that we can now see some of the screws in her head. That or she has a problem. I don’t know which.

Since tomorrow is New Year’s Eve, I’m kind of betting I can’t raise a neurosurgeon or her reconstructive surgeon, but I’m going to give it a shot. We’ll see what happens.

I’ll report when I know something more.

Anyway, you know how on the Munsters the dad had those bolts coming out of his neck? Imagine that, somewhat less pronounced, at her temples.

I’m a bit freaked out.

I am not panicking. Bull shit. I am panicking. I mean, I know it’s not an emergency. Whatever it is clearly isn’t causing her pain or difficulties beyond the ones she’s already experiencing, so I need to be calm and rational and not rip anyone’s head off.

I can do this. I’m the grown up. I’ll just keep reminding myself of that.

Top Ten Gifts of Christmas

Even though three quarters of the human members of the household were sick for Christmas we had a really good day. There are a number of reasons for this, but I’m betting that getting to stay in pajamas and take naps whenever we wanted was a big part of it. Judicious use of Motrin probably didn’t hurt either. So, what were the ten best gifts this Christmas?


1) Sony 50mm f/1.8 SAM DT Lens for Sony Alpha Digital SLR Cameras

; This lens is probably my favorite gift. I need to work with it more when I’m not sick, but I love that it gives me far better portraits of my kids than I was getting with the regular shooting lens that I use. I’m hoping that it will work for the girls, too :).

2) LeapFrog Chat and Count Phone
Katie received this phone and has gotten hours of fun out of it so far. She seems to think it’s the greatest thing in the whole, wide world. She loves to push the buttons and listening to it make the noises.

3) Fisher Price Little People – Busy Day Home
She also received this house and, again, loves spending all of her time playing with it. I think these two presents, alone, would have made her Christmas and this is what we need to keep in mind in the future. Multiple presents and lots of presents aren’t necessary. I think we need to really work to limit the presents to three.

4) ThinkFun Tipover

Ben loves ALL ThinkFun games. He thinks they’re really cool and he really likes solving the puzzles. This one is a little different from his other games because it’s three dimensional and requires him to think in ways that I don’t think he’s tried before. But, we set it up for him once, he watched how the pieces could move and then he was off and running. He’s done the majority of the beginner cards already. I’m just praying they come up with more cards for this game before he burns through all of them.

5) ThinkFun Rush Hour
One of the best gifts we gave was ThinkFun’s Rush Hour to one of Ben and Katie’s friends. The kids love this game and with all the extension cards, it will keep them busy for a long, long time. My son is just starting to use this one — he had the Jr version, but he’s pretty much solved all the cards with that, so he’s moving up.

6) North American Bear Company Rosy Cheeks Baby Blonde Boy

One thing that Ben specifically asked for was a baby doll that was a boy, like him. Finding a boy baby doll turned out to be far more challenging than I would have thought. In large part because he wanted one that looked like Manhattan Toy Baby Stella Doll like his sister received. This doll is an excellent option for a little boy who wants to practice parenting on a stuffed baby. Frank has already become an important member of our household and been is very proud to show him off to people.

7) Getting sick. I know it sounds insane, but not having to run around on Christmas Eve or Christmas Day — or prep for guests who were coming here was strangely liberating. I don’t know that we would advocate getting sick as a good idea for next year, but it’s a good idea to remember that there’s more to the season than running all over the place.

8) Sam. My old dog is 11 3/4s. She’ll be twelve in March. At that point she will have passed her expected life span by two years. Could this have been her last Christmas? I don’t know. If it was, the fact that we were all together, she didn’t have to stress out at all, and she got to help unwrap a couple of presents? That pretty much defines her perfect holiday. It really does.

9) Wii Music
I’m telling you after hearing tales of all the people who received “gifts” of drums or other instruments, I cannot tell you how thankful I am that one very thoughtful friend got this for Ben instead. He has jammed with trumpets, saxaphones, and an electric guitar. He’s thrilled that he gets to try so many different instruments, and I’m thrilled that there’s an off switch. Talk about a perfect musical present. Yeah, I know, it’s not Rock Band and I do think that would be cool at some point, but for now, this is pitched at his level. The songs aren’t super annoying and he’s having a blast.

10) Katie. Though listed last, she is, without doubt, our best gift this holiday. She is healthy. Her head is healing well. Her scar is slowly disappearing as her hair grows in. She looks more like a baby and less like a patient. It’s wonderful. She’s a happy, healthy little girl. She’s a little behind, developmentally, at the moment, but it’s impossible to be worried because she has time to make up and skill deficits that she “gained” through the surgical process.

I know it’s a weird top ten, but it’s our top ten and our life :).

It’s Been One Year . . .

since my beautiful baby, Katie, was born. She’s still beautiful. Even sporting a haircut that would make a Marine (or a career Army guy) proud. She had a fun day today, I think. Ben sang her every version of the happy birthday song he knows (think, regular, Blue’s Clues version, Trout Fishing in America version, Imagination Movers version . . .at this point I’m thankful there aren’t more versions, or at least that he doesn’t know them). While she was napping Ben and I wrapped her presents. Well, I wrapped them once I wrested them away from Ben, though all three presents received his seal of approval. Then he and I made cupcakes. Our friend over at Overflowing Brain suggested a pile of icing on a small piece of cake to see if Katie would accept that. Miss Katie played with the frosting and that was about it, but we have cute pictures of her fussing about frosting on her hands, so that’s cool.

She loves her Baby Einstein Count and Compose Piano. She was thrilled when she figured out that pressing the buttons makes music. She’s big into the head bobbing, baby dancing thing at the moment. The doll was not as big of a hit, but she’s a bit young, maybe. Ben, however, adores it. He was busy all afternoon until bed time, feeding her doll, changing her doll’s diapers, and so forth. I wonder why it never occurred to me that he might like a doll of his own. Sigh. Well, there’s the option of Sam’s practice baby if he really wants one. Sam certainly doesn’t need it anymore (think babyproofing a dog — eh, I’ll add it to the list of things I want to blog about).

I think, for a one year old, it was about the best birthday one could hope to have. She will be having a party later with godparents, grandparents, and assorted friends, but that’s more of a thank you for supporting us this year than a true Katie is one party, though there will definitely be some of that, too.

And yet . . . all day I had a combination of happiness and sadness. I can’t believe it’s been a year. I can’t believe how much ground I still need to regain and it’s been a year already. I still can’t drive much past the interstate near our house. I haven’t been able to drive myself to my parents’ house in over a year. I fight bouts of dizziness that have nothing to do with my hair color (blonde, for those who haven’t ever met me); I get worn out easily. I feel like I’ve been flattened a million times over. I have less strength in my left arm than I should have and it is super pain sensitive (that would be the one where the IV infiltrated and left me with a pint of blood where tissue and stuff should be). My concentration is still weak. I have serious bouts of depression and anxiety. So intense that I can barely breathe. It’s just unreal to me that a year could go by and though I am miles ahead of where I was at this time last year, I still have miles to go before I get back to where I was on even November 16, 2008, and trust me when I say that wasn’t exactly the best place my body and health have ever been.

And even as I write this and think about what I have to do and where I have to go, I can’t help but think of Anissa Mayhew tonight and think about the journey she’s embarking on. Her road will be different from mine, but no less fraught with irritations, disappointments, and struggles. She has a fabulous support system and I hope, I hope that she gets the chance to be as grateful to hers as I am to mine.

So, to those of you who came and stayed with Ben, or who brought us things when we needed them, or who flew in to help my mom, or knitted hats for Katie to give to the hospital that took such outstanding care of her while her mommy couldn’t, we say thank you. And if you’re reading this and you want to help another young mother who is in a truly devastating situation, please go here: Help for Anissa and do what you can.

The Aftermath

I will write in more detail about Katie’s surgery in an upcoming post, but today, I just want to check in so folks know I’m alive and that we’re maintaining. I wouldn’t say we’re thriving, but we’re not going under, so I count it as a win.

We owe a massive debt of gratitude to the folks behind Baby Toolkit for their absolutely lifesaving gift of Dinner Done!. Not having to worry about food shopping, prepping, or really cleaning up after has been such a blessing and a gift. I strongly recommend searching out similar services in your area and putting their phone number on speed dial. When someone is in a really bad place, this is a gift that can make a HUGE difference in their quality of life as they go through whatever their struggle is.

Katie is doing well, but having a lot of difficulty sleeping. I think part of it is fear, since the last time she went to sleep she woke up to a great deal of pain, but part of it may be residual effects of the anesthesia and the intubation. I know it took me a few weeks to work through the additional air in my system after she was born last year. The only way she will sleep is in her swing and only after she has been held and swayed for a while. P thinks we’re spoiling her; I think she’s been through something hugely traumatic and needs some extra nurturing while she recovers.

Her hair would do a Marine proud. It’s roughly an eighth of an inch all over (except at the actual incision site, which is covered in steri-strips). The first day home she couldn’t roll over or crawl, but by day three she was doing both. Yesterday and today, she was cruising from one piece of furniture to another. Took a couple of tumbles. She cried, but cheered right up. My heart stopped, but all is fine.

She’s eating like a champ and has gained back almost everything she lost post-surgery (she went in at 18 lbs; came out about 16.5 lbs and is now almost back to 18 lbs). This is why they were so adamant that she be strong and healthy, and gain weight prior to surgery. Makes sense now.

Ben has dealt with all of this reasonably well. He was very frightened when he came in the first day. He came running over, very excited, but saw Katie’s head and stopped cold. By yesterday, when my mother came to visit, he explained to his Nana that she “cannot touch Katie’s head” and was reasonably protective of her. He’s saying some things we’ve not heard him say before, but nothing that’s really out of order for a four year old. Although, yesterday, calling Katie “stupid Katie” got him sent to his room to cool off.

I’m ended up turning over the classes I was teaching after a very long weekend of very little sleep. So, I am not working until next week. Well, some course prep, but not much else (except some holdover course design issues, that are in the process of being resolved). So, we’ll spend the next few days off doing things that need doing. Planning for November and December homeschooling. Making new charts for Ben. He likes his routines on charts where he can see them, so I oblige. I have some holiday planning/birthday planning to do.

Katie has her follow up appointment on Monday, where hopefully we can get clarity on when she can start being around people a bit more. We have been in virtual seclusion for over a month now, and we’ll have to decide how much exposure is acceptable and whether we need vaccines for flu and H1N1 or not. I likely can’t have them, but can the rest of them? We don’t know. So you know, I believe strongly in vaccination as it’s a means of protecting people like me who cannot take them — so it’s a wee bit self-serving.

In any event, we’re here. We’re hanging in there. I’ll talk more about the surgery and the immediate following time soon. I still need to process my feelings and thoughts on it a bit more.

And on with the show . . .

After much wrangling and discussion we now have a new set of surgeons and, more importantly, a surgery date. Along with this surgery date, we have a number of other things that we have to do prior to Katie’s surgery.

First, she will have a blood draw for blood typing as soon as I can arrange it. This is to determine initially whether P is compatible so he can do a directed donation if he is. This is the preference for the cranio-facial surgeon. The neurosurgeon indicated that he didn’t care one way or the other.

About a week before the surgery, she will have a pre-op appointment with the cranio-facial surgeon. We will go back over the surgery procedure and what it will entail. This shouldn’t be surprising in any way since we’ve been over all of this so many times.

Next up, Katie has a pre-op physical with Dr. D. I’m quite certain neither of them are looking forward to it. There is a one page form that he will fill out that we will hand carry to the hospital on the day of the surgery. We’re also going to squeeze in Ben’s 4 year old well kid exam. Because we’re homeschooling him, he can delay his shot for a year, which I think is a good thing.

After that, things will ramp up considerably. The day before the surgery we will be dropping the girls off at their vet’s office. Because we will be erratically available, it makes the most sense to get them somewhere that they can be fed and cared for consistently. With Sam’s issues, it’s unfair to ask someone to care for her who isn’t experienced with her sorts of problems. They have a large space for her and that will work. I need to iron a few details out with the office manager regarding how we want to do a couple of things, but that can be done sooner or later.

We are still working on Ben’s care during this. We’re hopeful that will be sorted out in the next day or so. Whatever plan we come up with for him will likely involve getting him settled, at least for a couple of days, with someone who can take care of him during the most difficult parts of Katie’s surgery experience.

After all of the others are settled, we will be taking Katie to the hospital for pre-op lab work. They’ll test her six ways from Sunday and make sure they have blood that is compatible with her (assuming that P’s is not compatible, we will be using the blood bank). We’ll then move into wait mode until the following morning.

Katie is allowed to drink formula until midnight. After midnight, she can have Pedialyte (clear) until 4:30a. After 4:30a, she is not allowed to have anything.

We are to report to the hospital at 5:30a. Presumably, there will be some time with Katie while they’re getting her prepped for surgery. At some point, her head will be shaved, but I don’t know if they plan to do that while we’re with her or not. I know she will have IVs, etc., inserted during this time as well.

She is scheduled for surgery at 7:30a. This could be delayed if there are more pressing situations, but she should go that day if not at that time. Of course, it will be much, much harder to explain to an 11 month old that she can’t eat than it was to explain it to me. I’m not clear about the length of time this surgery will take, but hopefully she’ll be through surgery by sometime in the early afternoon. She will spend at least one night in the PICU because of the nature of the surgery. We have had estimates of everything from three days to seven days as the amount of time that she will likely spend in the hospital. It really depends on her. We’re praying that she recovers quickly and feels well enough to go home quickly.

We know that post-op she is going swell a great deal and that her eyes will be swollen shut for at least a couple of days. I think I’m prepared for this, but I’m not sure. I understand that she’s going to be very frightened and disoriented. I suspect she will also be very clingy and want to be held as much as possible to be reassured that she’s okay and that she doesn’t have to be scared.

We’re currently planning to be in the hospital in shifts, switching off which one of us is with her. The major issue here is that I have work. Unfortunately, school doesn’t stop, so I will be teaching throughout this. Should be interesting at any rate. Fortunately, we’ve found a place to stay that has wireless/ethernet and the hospital also has wireless. This should be workable.

Once Katie is home, she will be kept fairly isolated from others to avoid infection until she gets an all clear from her doctors. This likely means that her birthday party will be postponed, but not canceled. It will likely have implications for Ben’s Halloween, but we’re working on that to see if we can keep from losing the experience for him even if his sister can’t go, too.

Katie will have her first post-op appointment approximately two weeks after the initial surgery. We’ll find out then what they think and what else she may need to do with respect to this. There is a possibility that she will need a second surgery when she is either five or six, but that can’t be determined at this point. We have to see what happens with the bone as she ages.

There are other things: no immunizations for awhile before or after the surgery. Nothing but Tylenol for two weeks prior to the surgery (so we do have a solution if she starts teething again), and she has to avoid illness. This means we’re pretty much living under quarantine for the forseeable future. She needs this surgery and she needs it to go off without a hitch, so this is where we are.

We’re nervous; we’re worried; we’re scared. We have faith and we are praying that she will be okay and that this is a one time deal for her. If you’re looking for something to do for us, please, please pray for a successful outcome for her.

10 Months Ago . . .

my daughter was born. At this point, she was out and they had taken her to be weighed, cleaned up, and all that fun stuff while I was being sewn back together. Actually, first they were taking pictures of my uterus (sigh) and then putting me back together. I have “interesting fibroids.” It’s unfortunate that one of those interesting fibroids tore probably not too long after the photographs.

In any event, Miss Katharine is now ten months old. The tag with her name came yesterday. I wear a necklace that has a tag for each of my children, their first names, and their birth dates. I’ve felt weird the last ten months wearing it without Katie’s tag, but now I don’t feel weird anymore and I’m grateful that the tag got here before her surgery date arrives. Katie is doing a lot of things now. She pulls up to a stand, she crawls, she puts everything in her mouth. She can say Mama, Dada, Baba. These are pretty much all the things she needs to say to get her way right now. And trust me, a more demanding Mama you have never heard. If she thinks she’s being ignored or if she thinks that I should be in front of her, “Mama, Mama, Mama, MAMA” until she gets her way.

I’ve joked many times that Katie is lucky she’s our only daughter as her name is the only girl’s name P and I could agree on. Had Ben been a girl, Katie would have been in big trouble. However, he wasn’t and his name is special for its own reasons, as is Katie’s. Ben’s middle name is Alexander. When my mother called our Aunt Joyce and told her Ben’s full name, my aunt’s response was, “That was Marion’s middle name, too.” Well, yeah, I knew that. I named Ben after Uncle Marion, but I just couldn’t bring myself to use Uncle Marion’s first name. I believe he would have understood. I hope that Ben will be like Uncle Marion — a nicer, more pleasant person, I don’t think I can imagine. He was as generous with his time as I hope to be someday. He was devoted to his mother (let’s hope Ben gets that trait, for sure), and he adored his wife. I loved my Uncle Marion very much and I do miss him. Ironically, and really, I didn’t realize it at the time, we also named Ben after the two male characters in my favorite book as a child, The Crystal Tree. The two boys we’re introduced to in the book are Benjamin and Alexander and they become fast friends. So, perhaps a bit literary as well.

And yes, this is Katie’s post, but I needed to preface a discussion of Katie’s name with that so that you’d see I have a habit of choosing names that have both intentional and accidental significance. In Katie’s case, both of her names have significance to me. I suspect that it is going to come as something of a surprise to someone who sometimes reads this blog to find out that my daughter is named after her, but she is. My sister has a friend named Katherine who I have known since they were both about eight years old. I quite liked Katherine and really admired her determination to be who she wanted to be and her willingness to try new and different things while trying to find herself. I think she grew into an amazing young woman who I am proud still to know. I had decided around her mid-twenties if I ever had a daughter I’d want her to have that same strength, that same fearlessness that I see in my sister’s friend and, after some discussion with P, we agreed that a daughter of ours would bear that name. Admittedly, it’s spelled differently because I’m also a huge Katharine Hepburn fan and it worked for us. Again, ironically, it turns out that the slightly different spelling of my daughter’s name is the same as the spelling for the mother of the lead character in Ellen Emerson White’s White House series of books (it begins with The President’s Daughter.)

Katie’s middle name is for my grandmother, my father’s mother. She was my rock for most of my growing up years and into my young adulthood. It was a severe body blow when she died and I didn’t think I would ever get over it. I don’t know if I’ve “gotten over it” yet, but I don’t find myself sobbing for no apparent reason the way that I used to, and I was able to watch football this past weekend without getting overly melancholy, which was a major accomplishment. But Marie also connects Katie to her other great-grandmother, Mary Margaret, her great Aunt MaryAnn, her Grandma Maria, and her Great-Aunt Marie and a cousin, Mary, too. All of those women were strong. They were fighters. And that’s who I want my daughter to be.

If I hadn’t survived her delivery, P might have been able to explain parts of the reasons for her name when she was older, but he wouldn’t have understood or been able to explain all of the reasons. I had meant to write them down, but I didn’t get around to it. Now I have. Not that I think I’m going anywhere, but all of the deaths of the past year have reminded me, forcefully, that we don’t know how long we’re here and we shouldn’t take for granted that our children will know the stories unless we tell the stories.

The Sandwich

And how I wish I was about to write an ode to food. I would love to be writing about food. In fact, I would give anything to be writing about the wonderful pork chops I made or the grilled cheese sandwich my son ate for lunch. Instead, I’m talking about the sandwich generation, of which I am now a card-carrying member.

The saga began last Tuesday. I was on the phone with P and his work cell phone rang. We said goodbye and I went on with my day for about three minutes. Our phone rang and it was P. The other call had been his mother, she was feeling very sick and needed him to take her to the hospital. I did not see P again until Thursday.

His mother is still with us, but she is very ill. Ill enough that her time in the hospital will likely be measured in weeks, not days, and will involve an incredibly risky surgery from which she is not guaranteed to live, but without she is guaranteed to die. So, we’re moving forward toward a surgery date that keeps getting moved as her condition doesn’t deteriorate and her doctor believes we are gaining ground that will be valuable post-surgery. He’s good and I hope that he’s right about this one. A notable fact about P’s family is that his parents do not have health insurance of any kind. Not for want of arguing on our parts, but they do not have it and that is that.

P’s father has not been well for some time. In my eyes, he exhibits all of the signs of a person with Alzheimer’s disease, but because he refuses to see a doctor for any reason, and believes that we are conspiring against him when we suggest he take an aspirin, there has been no diagnosis. P was stretched to the end of his rope by Wednesday night. His father kept wandering off. P could not keep track of him. They went back to his parents’ house to get some sleep and his father kept waking him up wanting to know who he was and what he was doing in the house.

After some discussion, we agreed that hiring home care for his father was a prudent move because, unsurprisingly, P needs to be working and we have obligations to our children, not the least of them to Katie. The home health care lasted less than twelve hours before P’s dad threw them out of his house and called the police.

During the course of the discussion with the officers, P’s dad made it clear that he didn’t want to see P and he didn’t want P on his property, so P had to abide by those wishes.

In the meantime, we discovered some issues with our insurance and Katie’s upcoming surgery. Issues large enough that the surgery was almost completely derailed. Fortunately, we have good friends who were able to recommend another surgeon who is not a problem for our insurance, so we have an appointment with that person on the 2nd of September. Ideally, surgery for trigonocephaly is completed before the 1st birthday. We are just under 3 months from Katie’s first birthday. I’m hoping we can get this done quickly and settled. I hate that we’ve wasted over two months waiting for people to figure out what they want to do only to discover at the last minute that this is simply not going to happen the way that we thought it would.

However, given the way things have turned out, it’s a blessing that her surgery is not a month from now as we had planned. We planned for September 18. In the current circumstances, P’s mother will not be back in her own house and we are not sure whether P will have enough time to take to be in the hospital with Katie were the surgery to happen then. So, moving it a month later, even, would be a huge bonus for us.

But this is what the sandwich is about. We’re caught between our responsibilities to our children and our responsibilities to P’s parents. How do we integrate a woman who needs quiet and rest into a house with a super-active almost four year old (read that to mean LOUD)? How do we find space for her in our three bedroom house? How do I add her care to the demanding schedule that I already have of children, dogs, house, husband, and work (read students)?

I don’t know. I wish I did know, but I don’t. I wish I could say that I’ve handled all of this super gracefully, but in the interests of the integrity I claim to have, I haven’t. I’ve been difficult and frustrated and seriously pissed off about the reasons this situation is coming about. I called my parents and confirmed that they have insurance, long-term care insurance, and every other freaking thing you can think of to keep this insanity from happening twice.

I have reined in my inner pain in the ass to some degree and have not looked at P and said, “See . . . this is why I insisted on two children. No one person should have to deal with all of this essentially by himself.” However, my inner pain in the ass was not as kind about the dishwasher that died (immediately after the death of the garbage disposal), the code violation we were given, and so on. The garbage disposal now works thanks to one of P’s friends. I am remembering all of the handwashing techniques that I learned when I lived in Auburn (the land of no dishwashers, at least in any house I could find). And we were found in compliance with code as of today and we discovered we have a crank in the neighborhood who is apparently calling in violations on everyone they can. It’s truly charming.

Right now, I’m hanging on by my fingernails and hoping that we will pull through this without losing our minds. It’s hard and it’s painful in many ways, particularly for P. I feel for him and hope that he knows how much I admire his strength in facing an impossible set of circumstances and choices. One man cannot be in four places and having to choose and prioritize is hurting him terribly. Having his daughter turn away from him when he came back after almost 72 hours away was incredibly painful for him. She settled back quickly, but that initial reluctance hurt him.

Long days and hard decisions are facing all of us. Pray for us as we go through these challenging times and remember to talk to your parents about their plans, their insurance, and all that stuff. Keep talking and arguing until they do the things that need to be done. It’s important, and it’s responsible.

When Asthma Doesn’t Seem Like Asthma

Quick. When you think of someone with asthma what do you picture? What do you hear?

For most people the answer is wheezing. They see someone who always seems to struggle for air a bit or whose breathing is audible a lot of the time. My aunt had that kind of asthma. It was scary stuff. She could go from feeling fine to not feeling fine quickly and listening to her struggle to breathe was painful and when you were familiar with her triggers, you took great pains not to trigger an attack.

But my aunt’s asthma is more complicated for me because, it turns out, that I, too, have asthma, even though I’ve never sounded the way she did. I knew about exercise induced asthma and I knew that wasn’t what I had. Exercise and I have always been on somewhat unfamiliar terms (my current attempt at a 30 day challenge, not withstanding). But I always knew I struggled sometimes to breathe. I would start coughing and I couldn’t stop and I couldn’t seem to catch my breath. It was uncomfortable, but I didn’t think it was life threatening. Life limiting maybe, but not life threatening.

And then, almost ten years ago, it wasn’t so simple anymore. I got sick. Very, very sick. My poor doctor was taxed almost beyond his abilities trying to figure out what was wrong with me. He ran tests; he thought he had an answer. Off to a specialist I would go and they would determine that what he thought wasn’t it. He thought I had polyps in my nose. There’s family history and it seemed logical. Except, upon much closer examination by an ENT, it was determined that I absolutely didn’t. More blood tests and he found RSV. Yeah, that RSV. The one that kills babies and old people. That one.

I was so sick that I ended up taking two weeks leave from teaching — in the middle of a semester. Let me tell you how often that’s done. Yeah, very rarely. But, with his note and sick leave built up, I was able to do it without a loss of income. And still, I was sick afterward. It took another three months of me not getting better and him struggling to figure out the problem before the magic day happened.

I started coughing in the office. The spontaneous, racking cough that would get where I honestly thought I would die before I would stop coughing. The cough where I couldn’t catch my breath, couldn’t speak, couldn’t do anything but cough with tears streaming down my face.

He had been on his way to see another patient when he heard me. He burst into the room, and this was real bursting because I hadn’t even seen the nurse yet, and said, I know what it is.

I’m looking at him like he’s lost his mind and he hands me a rescue inhaler and tells me to breathe squeeze and breathe in. I did. He told me to do it again. I did.

And suddenly, I could breathe. It was like a miracle. It was Albuterol.

He called it non-wheezing asthma and he knew how to treat it. I take two different drugs, carry rescue inhalers on my person at all times, and have a nebulizer in my bedroom (and in my carry on luggage when I go on trips). You’d think it would be a relief to know what it is and how we can manage it, and in many, many ways it is. Now I can explain why some things set me off and make me cough and uncomfortable, and yeah. But, because it doesn’t sound like the asthma my family has known, it’s been hard, at times, for them to accept that it is, in fact, asthma.

At one time, I was advised that I should get full-fledged asthma testing because “it’s not really asthma unless you have those tests.” My doctors have a different point of view. I would not respond so well to the drugs that I take if I didn’t have asthma — in other words, they would have no appreciable affect on my coughing and on my struggles to breathe.

These days non-wheezing asthma has a new name: cough variant asthma. What’s particularly interesting, if you read around on it, is that it is difficult to diagnose because the usual tests for asthma don’t work. In fact, there are really only two ways to diagnose it 1) be lucky enough to have an attack in the doctor’s office, or 2) inhale irritants to trigger an attack in the office. In other words, have an attack to prove that’s what’s going on. So, I guess I got lucky in that I had an attack in the office and my doctor knew what he was hearing.

The really tough part is that because I have it, both of my kids have an increased chance of developing it. The first pediatrician we had didn’t think it was an issue, but our current one asks me every time we bring Ben in if I’ve seen any signs or anything that worries me. Because it’s difficult to diagnose and it does occur in children, the best way to catch it is for parents to be aware that it exists and that it doesn’t behave like typical asthma. So, what do I watch for:

1) Coughing. A dry cough that is completely unproductive. It can sound a bit like barking and a bit ragged. It can also seem uncontrollable, like the kid literally can’t stop coughing. Sometimes the kid may say that their ribs hurt from coughing or talk about a little tickle in the back of his/her throat that seems to be making them cough.

2) Specific things that seem to trigger a cough. My triggers are grass, pollen, cigarette smoke, dust, and perfume. So yeah, I don’t get out much.

Of course, this means when Ben has an unexplained coughing fit, I get a little nervous, but I don’t see the uncontrollable aspect that I associate with my asthma. He seems to be able to get it under control and he doesn’t seem to get breathless. I guess that means so far, so good.

Excuse me, I have to go find an inhaler — the dogs just came in and I’m having a “bad breathing” day.