Making Room for a Shifting Plan

It (is) has been a tough road to recovery; particularly at night. Some nights over the past almost two weeks (tomorrow is two week post-surgery point), Josh has slept only 3-4 hours. I feel very much like the parent of a newborn right now. Absolutely no energy. We certainly understand now why a tympanoplasty is rarely performed on children this young–that is, you have no idea if they are in pain, hearing strange sounds (I’ve read from adults recount of the experience that this happens), popping ears, some sort of residual memory of surgery cropping up? Just not sure. We just continue forward and it seems that although one day might be worse, the next is better and so, on a whole, forward progress. I finally started using his sensory brush again on Monday, just once a day at this time. I think that is helping to reintegrate his systems. He had become so inflexible once again that there were only two shirts he’d wear (both Buzz Light Year) and one pair of pants (size 18 mos., which he’s somewhere along the way dubbed his “Buzz” pants). This increasing inflexibility was a signal to me that all of our hard OT work over the past five months was just running down the drain, after a week or so of lots of Curious George and Bernstein Bear videos (to keep Josh from moving around too much) and no brushing. Thus, Josh was receiving very little proprioceptive input.

Also, the big news is that we are deferring our John Tracey enrollment for one year. When JTC learned about the Tympanoplasty, they suggested the delay. Josh won’t be able to have a hearing test in his right ear until at least the end of August. And so we will not know his current hearing levels. For this reason, I’m thinking no hearing aid in that ear either, but waiting to talk to the ENT at our post-op and then his audiologist. At this time, Josh still seems to have very little hearing in that ear. We know, however, it can take a long time for the hearing to return after a tympanoplasty. John Tracey Clinic wants him coming when he is at his hearing best, not his hearing worst. We agreed that this makes sense and we were also concerned with flying so soon after the tympanoplasty. We certainly didn’t think it was worth risking the ear drum repair. And so we will be home his summer. I am not even sure that I’ll put Josh in his school for the summer session. Hannah is going to take care of Josh a bunch this summer as it works well with her early start at school in August, she will be an RA this coming year, and a June trip to Japan. I am thinking that this should be a summer where Josh just gets to be a kid. Of course, he’ll still go to OT and perhaps a new SLP that is more focused on speech fluency, which is his current language issue right now.

I’d like to share with you a quote that I keep sharing in my yoga classes. It is a quote I found valuable during a difficult time in 2007 and I dug it out of my 2007 journal recently. It keeps rattling around in my brain.

“Life is not the way it’s supposed to be. It is the way it is. The way you cope with it is what makes the difference.” Virginia Satir

Typanoplasty in Toddler

Sorry to leave you all hanging with my last blog entry. It’s just that we were going through some serious internal conflict about our decision at that point. Seeing that your son’s ear has been detached and reattached is extremely traumatic. And then watching it turn every shade of dark dark purple. Horrible. So, in all, I’d say this surgery has been way more dramatic, traumatic, and problematic than we’d previously expected. Indeed, I had to pull Josh from school and daycare for the next three weeks because a cold, especially one with a sinus or ear infection, would place the potential success of the tympanoplasty in jeopardy. Moreover, Josh is under lifting, bending, and exercise restrictions. I am not sure how his school or day care would  enforce this especially since the weather is nice and both places take the kids outside to the playground every day (in the case of my Aunt and Uncle’s daycare, their whole yard is like one big glorious play ground). So, I’ve definitely had to make some quick adjustments in my schedule and no subbing yoga for a couple of weeks. I still need to squeeze in the preparation of a yoga workshop, which I am presenting in two weeks, on using yoga to support life transitions. Hmmm. Funny how the subject of this workshop plays directly into my own life right now. Fortunately, Hannah finishes her first year of college in two days and will be home to help. Yay!

All of this ear drama has sure made Josh’s eight crowns and root canal seem like a cake walk. I was brushing Josh’s gums this morning and he started to cry. I was like, “oh yes, he just got eight crowns placed below his gumline three days ago–of course it hurts to have them brushed.” But we still have to do it. Just as we have to place ear drops in Josh’s right ear three times a day even though he cries and says “no, I don’t like that” whenever he sees the toothbrush or bottle of ear drops come out.

As far as the tympanoplasty goes, we did opt for the titanium prosthetics to replace Josh’s incus and malleus. This decision was done without any internet research or careful weighing of the benefits and contradictions. I remarked to Chris yesterday that it is ironic how I spent three weeks diligently researching alternatives to silver crowns for a toddler and yet, I just go ahead and approve a dramatic replacement of middle ear bones on the fly. This decision, my friends, was purely based on a “strong intuition” (and not mine, necessarily but Chris’s–definitely more reliable as Chris has some uncanny sense for finding “true North”). And so rather than running around second-guessing the decision (like I’ve done for the past few days), I am instead going to embrace the decision and stop focusing on what could go wrong and instead switch to focusing on what could go right. Positive thoughts.

Since the procedure, I’ve also spent much time researching the pros and cons of a tympanoplasty itself. Another decision that was only made on the Monday prior to surgery (although hole needed repairing, we maybe could have put it off a few years).  I am realizing that the recovery from a tympanoplasty is rigorous, if not grueling–as well as lengthy . . . up to six months. And just adding in the titanium prosthetics didn’t do much to increase the difficult road to recovery. It seems that one of the critical issues is whether the graft takes and allows a covering to form over the hole in Josh’s tympanic membrane. The cartilage graft came from behind Josh’s ear and I see a dent behind Josh’s ear where this came from. The graft works like a lattice, allowing Josh’s skin to bridge an otherwise unbridgeable gap. It is so fragile over the next few months that a bad sneeze could dislodge it. So please keep the prayers coming for a full recovery.

My other concern in all of this is the flying prohibition. I am not sure yet whether this puts our John Tracey plans at risk. I am waiting to talk to our ENT at our May 24th post-op. Until then, praying for no colds and trying to keep Josh pretty still (which goes against all of our OT work–sigh). Also, while Josh’s right ear is recovering, no hearing aid in right ear and his ear is filled with so much blood and packing material that when his left ear is down in the pillow, he has virtually no hearing right now. So I guess its two steps forward, one step back. But overall moving forward.

24 Hours Post-Surgery

I guess it is always good when you make it to the 24-hour post surgery marker. So, we’ve made it!  Tiny celebration. Honestly though, I have to say that watching your child go through all of this is just about one of the hardest things I’ve done as a parent, as a person.

Josh was a trooper prior to surgery. Even with no food or water all morning (and they didn’t get him back for surgery until nearly 11 am), he did amazingly well at the hospital pre-surgery. He was excited to play with the toys and even, after some coaxing, willingly replaced his Buzz Light Year shirt with the hospital’s pajamas.

The surgery lasted close to five hours. Josh ended up with silver crowns on all eight molars, plus one root canal. We are supposed to be brushing those crowns along the gum line diligently now (they are bleeding), but yeah right–Josh is even more miserable than the standard dental patient due to the major surgery undertaken on his ear yesterday.  We thought our ENT would be going in through the canal, but he made an incision that goes the whole length of the right ear and went in the back way. So now, Josh’s ear is extremely bruised, swollen and looks vastly different than it used to. I spoke with a nurse today who said the swelling would go down, but the ear may never be the same shape again. I guess we didn’t know this going into the surgery, so it was kind of shocking for me to see this morning. Anyway, our ENT discovered that Josh’s first and second middle ear bone are very malformed (probably even worse on the left since his hearing is worse on that side). They were much smaller than they should be and basically, didn’t connect to conduct sound. There was also an issue with the placement of his ear drum, which was also not positioned to maximize the conduction of sound waves. Our ENT came out during surgery and told us that, while repairing the ear drum, he’d try to reposition it in a manner to maximize sound delivery. He also told us we had the option of replacing Josh’s first two middle ear bones with titanium prosthetic devices. We were told there is an 85% success rate in restoring conduction with these prosthetic devices. And of course, not without a some risk as well. Quite a thing to have thrown at you with about three minutes to make a decision.

What would you do?

Broke Open Heart

Open your heart wide,

see how it floats.

See how all this life

we pretend to be

tethered to those

we so love and even

so, be fierce in this love;

wild, heated,

bright colors smelling

of blue and red

spilling,

pouring,

mixing,

as it flows

freely towards this

sweet blond boy.

Tonight I see

every single line

of an American

flag, blowing in

the wind of the

neighboring yard,

as if in slow motion.

Hour after hour of car-

accident moments.

Breathing in heaps of

yellow two-year-old hair.

Any tethers merely

phantasmic ties,

dissolving sutures.

And cold winds will come.

I can even wrap him in

my woolen blanket arms,

as he comes in from the cold.

As he comes in once or twice

before he is back on his way;

strapping on his very journey,

his own “wild and precious life,”*

his own “I am.”

*thanks Mary Oliver for one of the most endearing and ever appropriate lines of American poetry

Surgery Update

Josh is scheduled for dental surgery in the morning on Thursday. At 1 pm, our ENT will take over and will clip Josh’s upper frenulum, as well as repairing his perforated right ear drum. I guess they take cartilage from behind his ear for the repair. While in there, his ENT is going to get a good look in his middle right ear and try to determine the cause of his conductive loss (at least from a bone standpoint). If he thinks he can do anything surgically to enable better conduction of these bones, he’ll let us know. We may have some decisions to make in the waiting room. It does appear now that Josh will be in surgery the better part of the day on Thursday. We very much appreciate all the prayers, positive thoughts, and love that you can send Josh’s way on Thursday.

Today we went to the bookstore looking for some children’s books about going to the hospital. The very best I could find was Curious George Goes to the Hospital, which was first published in 1966 (I owned a copy of that book when I was a child). It is the one where George swallows a puzzle piece and has to have it surgically removed. The book is a little outdated, from a medical standpoint, but still gets the idea across, I guess. I also purchased Josh a stuffed Curious George to bring with him to the hospital and back to the OR. I am telling him that George has been through it before and so he’ll help Josh be brave. We could bring Buzz Light Year with us, but I don’t think he’d be very huggable in the OR or in recovery.

We were also sent home with a kit containing scrubs, surgical gloves and mask, and even a gas mask–the kind they use to deliver the anesthesia initially. We are supposed to get Josh used to these items before Thursday. Josh knows he is going to the hospital to get his teeth and ears fixed, but I don’t know how meaningful this really is to him.

Does anyone out there have any other ideas on how to prepare a toddler for surgery?

My little mouse

Job Description: Patient Care Coordinator (or, How You Know When You are a Parent of a Special Needs Child)

You will be expected to keep all medical records for your son in an orderly fashion. Large ring binders will be provided to you for this purpose. You must provide your own 3-ring binder hole punch.  Knowledge of spreadsheet software will come in handy to track all of your son’s medical provider and specialists’ contact numbers.

Please note: leaving loose piles of physician and therapist,  medical, dental, and speciality medical clinic cards around the house, in your wallet, and scattered about the bottom of your purse does not count as being organized.

You will be expected to quickly learn ear, mouth, and genetics-related medical terminology, as well as learning how to interpret an audiology report and graph. From ABR to PRN from frenulum to cochlea. Begin your study now. The internet will come in handy for research purposes but sometimes it is just best to order a book on the matter. You may require a new bookshelf or two to house your new research library.

Please note: doctors and specialists are extremely busy and do not have the time to explain your son’s medical conditions to you.

Most importantly, know that your various medical experts and specialists are not required to communicate with one another. Even your pediatrician will not function as the primary coordinator of your son’s care. Again, doctors are much too busy for such matters and cannot be expected to participate in the coordination of your son’s medical care. For this reason, your role as Patient Care Coordinator is extremely important. Although yearly performance reviews have not yet been implemented, you will find yourself executing your own performance review prior to all of your son’s surgeries.

Prior to any required surgery, YOU will be expected to call all of the specialists and doctors that your son has seen or is currently seeing, including his hematologist to make sure that the surgeons take the care required with regard to your son’s clotting issues.

Please note: it is not your pediatrician’s job or the attending surgeons job to call the hematologist, but rather it is your job to make sure that no unexpected bleeding complications crop up in the OR.

Finally, you must call all other doctors and speciality clinics to determine whether they have work that they’d want to perform on your son while he is under general anesthesia. For this reason, you will be grateful if you have taken the time to create a spreadsheet with all of their contact information.

****

Wait! No one sent me this job description two years ago. Spreadsheet? I didn’t think about doing a spreadsheet. And I cannot even find the card or report from our hematologist from two years back.

Performance Review: I have failed to meet the basic expectations required of this position.

But wait! How did I get this job? I DON’T EVEN REMEMBER APPLYING!

Even so, surgery is now scheduled for one week from today. May 3rd. In the morning. I’d better get busy making those phone calls and filing away loose doctor’s reports in Josh’s ring binder (oh dear, I think it’s been a year since I’ve done this last; I need to go through every cupboard and drawer to make sure I haven’t stashed a medical report away for “later” filing).

How do you know you are a parent of a special needs kid? You have no less than twenty cards from medical clinics, doctors, specialists and therapists that you haul around in your purse, that’s how.  

Green, Sustainable home on 3 Acres

I know this isn’t really the place for a real estate listing. But my blog does manage to find an international audience (don’t ask me how) and so I thought I’d post the listing for my dad’s place. He recently purchased a condo closer to my brother and I, but he still needs to sell his home.

If you know anyone looking for property that includes a park-like lawn, which could be turned into an amazing space for raising vegetables, surrounded by lots of trees and located in central Minnesota (between Fergus Falls and Battle Lake in Ottertail County)–this is an amazing deal. Plus, you can heat and cool the house for mere dollars each month due to a heat pump that heats and cools the home through geothermal energy in the ground. So very efficient and green. Also, the home is planned in away to maximize solar power. Finally, it is located within about 10 miles of at least 30 different lakes and is a short ride or even bike ride to Maple Wood State park. This would even make a great second home, or vacation home, with those who have the means to support two properties. Here is the listing again.

He also would be willing to negotiate on the price, some, I’m sure. But he started it out already at the low price of $200,000 since he’s already purchased another place and is ready to move.

Joy Now, Soon Dead

I realize it’s been awhile. Josh awoke this morning with cold number six since January. Still no date for his dental surgery and now, given the cold, it will for sure not be taking place this week. I am wondering if I’ll need to hold him out from school during the week before his surgery to try to foster a state of health. I am thinking that his body has been so busy fighting off infection in his decaying teeth that his immunity to general colds and such must be down. That just has to be the reason for this sick state this spring. It seems like we only get a week to 10 days off and then another cold settles in.

In the meantime, my twice per week yoga teaching gig has gotten very busy. I am always being asked to sub lately and so am averaging five classes per week. Which is fine, it is good experience and all, but it creates a sort of random schedule. And I am out most evenings. I am new enough to this “career” or whatever it is (maybe more like a stepping stone to the next career), that every class I teach still requires ample prep time. So I am busy and I guess this is eating into my writing time. Won’t always be so. No, it won’t. One stress passes into another. One joy passes into another.

Breathe now, soon dead. Write now, soon dead. Joy now, soon dead. Love now, soon dead. Stress later, soon dead.

And so, I think I am going to quit counting my gratitude march towards 1000 thanksgivings. It keeps me from recording them here because I have to go back and figure out what number I am on and I just don’t every want to make that effort. Instead, from now on, I am just going to mark my gratitude as it rolls in. Someone else can count if they want to. I am sure it will all work out in the end.

1. Hannah home for the weekend, making from-scratch refried beans in kitchen.
2. Ethan telling me this week that he’s decided that he is a pacifist (no ROTC for him–whew, why did I expend any amount of effort worrying about this–I do know my son, in the end).
3. Crab apple blossoms.
4. Dried cherries.
5. Josh eating blueberry muffins and trying bagels this week!
6. Family outing tonight to Punches Pizza. All five of us.
7. Ethan’s safety in Lincoln, Nebraska (gymnastics meet) last week during F2 tornadoes.
8. Chris. Chris. Chris.
9. DMB. Flussfest mit Hannah und Ethan diese Juni. Gott sei Dank.
10. Zoo concerts with Chris this summer. Part of the collective “us” returning. Signs of our slow emergence from baby and toddlerdom.

Walk for Talk–Fundraising for Josh’s School

FirstGiving – Your fundraising.

Our story:

When people are pregnant, they always say things like “well, as long as she/he is healthy . . . .” So what happens when, just before you leave the hospital with your beautiful baby boy, a hospital technician returns with your child from a routine hearing screening and tells you that your new baby has failed the testing but that it is probably just fluid in his ears and so he’ll have to be retested in a few weeks? Well, you go home from the hospital still happy, but there is a little raincloud hovering over the full on joy you had hoped to feel. In fact, there is a part of you that starts to worry that you may never be able to speak to your child. And then when, a few weeks later your eyes meet your husband’s eyes in a small sound booth at the clinic, both sets of eyes holding back tears, as your boy is once again failing the test? Well, then you leave the clinic with only the smallest shred remaining that the final retest will be passed. And you begin to really grapple with what it means to have a Deaf or Hard of Hearing child. You start to grieve, realizing that although ASL is fantastic way to communicate, it is not your native language. And if, at that moment, someone told you that Northern Voices, a school that has a fantastic Deaf oral program, exists and is bringing spoken langauge to Deaf and Hard of Hearing children everyday, it might actually ease your grieving a bit.

We didn’t find out about Northern Voices until February 2011, when Josh was about 17 months old. It has proven to be a miracle in our life, in Josh’s life. Everyday I am grateful to hear Josh’s little voice telling me that he doesn’t want carrots, or that he is scared of a movie or ask me about an excabator (excavator). We went so long without hearing him talk to us–his little voice is a gift, a miracle. Please consider a donation to Northern Voices to keep this wonderful nonprofit school running for others in our situation.

We currently are fundraising for Josh’s school (with its Annual Walk for Talk). Please consider sponsoring us, if you can.

For more info you can view this video about Josh’s school. Josh is featured in the second scene, counting his hearing aids.

THANK YOU!

Unexpected Surgery

Sometime in late February, I noticed a little dark spot on one of Josh’s molars. On March 16th, at Josh’s 2.5 year check-up, I asked his pediatrician about his molars–she got a brief look (Josh certainly didn’t let her linger) and said that she possibly saw some decay or just heavy plaque that needed to be removed. She recommended that I see a dentist before summer. So last week, Josh was up at night about every hour, beating on his left cheek. I thought it might be an ear infection and his school had noted a low-grade fever on Monday. Of course, Chris was out of town on business during all of this. By Wednesday night, Josh was able to communicate to me that the back of his mouth hurt. I seriously thought he might be getting a third set of molars. He was in so much pain that the promise of mommy providing some relief enticed him to allow me into his mouth with a flashlight. I was horrified–hole, after hole in the molars. I somehow snagged an emergency appointment with a Pediatric resident at the U of M on Thursday morning. Josh thought she might also be fixing his pain so he remarkably opened wide for her, even when she used the scary spiky instrument to tug at his crumbling molars. Yes, I gasped in horror as pieces of tooth just flaked away from the worst molar (the one I noticed in February). I cannot even imagine what caused the rapid decline. It is, however, very likely that his poor teeth developed at the same time all of the bones of his middle ear did a misfire. And goodness knows, the eating with him has been so rough that we’ve used sugar-based foods just to make greater inroads with him towards new textures and the like. I am not proud of his diet at this time. Not at all. I want to make sweeping changes; today. But it doesn’t work that way. And I am not sure how it works. I had Ethan (on spring break) take Josh to the park after his appointment on Thursday so that I could sob. Somehow hearing the dentist tell the hygienist, “occlusion” about seven times that morning just broke my heart and spirit. I mean, I’ve stayed at home with Josh for almost three years now and I feel like I’ve hovered over his every move. He’s never had even one bottle (exclusively breastfed). I’ve tried to do everything I can for his language development, his sensory issues, his brain development, his social skills, his eating habits–to the extent that I have any control, and we even have been brushing his teeth the best we can (albeit only once in the evening) with his sensory issues. I feel completely blind sighted by this mouth of decay.

I am awaiting a call from the hospital scheduling Josh’s priority surgery, which will likely involve the placing of seven (possibly eight) silver crowns on his molars (one molar may still be in tact). There is also the chance that not all molars will be able to be saved–but I am steadfastly believing they will all be retained. While he’s sedated, they’ll take X-rays and try to see if anything else is going on. Oh me, oh my. More sedation. More fasting for six hours before surgery. More letting complete strangers take my little boy away from me, while I trust them to do the very best for him possible. And all the while, Josh has huge oral aversion/defensiveness.

The upside in all of this is that I think we might have found the reason for Josh’s frequent night wakings. I also think some of this may have to do with his jaw alignment and bite. I think that the edges of the top molars dig into the bottom ones and vice versa. So hopefully while under sedation, they’ll get a better idea if there is anything they can do for his bite temporarily. We fully expected plenty of dental/orthodontic related surgeries in the future based on his wonky jaw alignment–just not this soon.

I have spent a few days in fear around this surgery. But I am going to start to believe that everything will work out well and that this unexpected surgery will actually help Josh out in ways that we didn’t even know were needed.