We've arrived in Holland

WELCOME TO HOLLAND

by

                                                            Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Our trip to Holland has had several detours, in fact, we've even been to Italy briefly a time or two. I feel like most of our time so far has been mid-air, not knowing when or where we would land. Now we're in Holland. Love the people! Still adjusting otherwise. It is an interesting trip with our other kids in Italy. Lots of blessings.

Inspiring

For a long while I have wanted to be connected with a support group of parents with kids who have special needs. I have been reluctant to join a group becuase previously I hadn't known exactly where we could fit in. ADHD wasn't exactly right, autism wasn't a good fit either even though that is probably what we're most similiar to.    And, I am also always trying to find things to help Calvin - lessons, therapy, friends, activities, etc. that will help him feel positivie and a part of things in a good way.

I was recently given the idea from a friend to contact the Epilepsy Foundation of San Diego. When I contacted them a wonderful woman called to talk to me about Calvin. I was very impressed with her kindness, knowledge and helpfulness. She knew exactly what kind of epilepsy Calvin had and where in the brain it was located based on my discription of his seizures and behavior.  It was such  a relief to have someone completely understand my life.  She gave me a few tips about how to change our medication to try and come to a level of more stability and let us to the appropriate group in the epilepsy foundation that could provide additional support.

The Epilepsy Foundation has an amazing program for families who have children with epilepsy.   The one that fits us best is a once a month meeting for children with epilepsy and siblings and parents in part of the Expressive Arts Program. The meeting includes dinner followed by Expressive Arts Thearapy for the children (epilepsy kids and siblings of all ages) in one room while the adults meet in another room to discuss issues pertaining to life with epilepsy.  It is such a great set-up since everyone in the family is involved and the kids are super thrilled with the art program. 

The adult discussion is largely un-structured. Thre is a moderator for the disussion (a parent of a child who is now 14 years old) and it sounds like sometimes there are guest speakers as well, but it is a chance for paretns to ask questions and talk about medicaion, school, behavior, seizures, doctors, etc. with other families who are in the same boat.   What is the boat? The boat is so much more than epilepsy. It is feeling panic, desperation, helpless and hopeless at times. It is not knowing where to go and what to do next to help your child. It is wondering what the future will bring. It is wondering how to pay for all the help you need and first wondering where to find that help.  Even though every case is different and every family has a unique situation, we are all working hard to find the best path for our child and hoping for a good outcome.

Last night I went to a beautiful concert at Symphony Hall. The guest singer was Brian Stokes Mitchell, acclaimed baritone.  My favorite part of the concert was his closer, The Impossible Dream.  Here is a recording of him singing as a guest singer with the Mormon Tabernacle Choir.  The lyrics are below.


As I listened to this song, I thought of this journey as a parent of a special needs child. In many ways it is living the impossible dream. All parents dream of having happy, healthy children, even parents who have sick or handicapped kids. As a parent I don't think we can help dreaming of the best even when it isn't possible. We fight, we love, we try, we reach for the stars and we are "willing to march into Hell for Heavenly cause." What cause is greater than parenting?  I love the ending ... "And I know if I'll only be true to this glorious quest that my heart will lie peaceful and calm when I'm laid to my rest."


Lyrics to The Impossible Dream

To dream ... the impossible dream ...
To fight ... the unbeatable foe ...
To bear ... with unbearable sorrow ...
To run ... where the brave dare not go ...
To right ... the unrightable wrong ...
To love ... pure and chaste from afar ...
To try ... when your arms are too weary ...
To reach ... the unreachable star ...

This is my quest, to follow that star ...
No matter how hopeless, no matter how far ...
To fight for the right, without question or pause ...
To be willing to march into Hell, for a Heavenly cause ...

And I know if I'll only be true, to this glorious quest,
That my heart will lie peaceful and calm,
when I'm laid to my rest ...
And the world will be better for this:
That one man, scorned and covered with scars,
Still strove, with his last ounce of courage,
To reach ... the unreachable star ...

Embarrassing scenes in public

I was looking over this blog and noticed that I have never written about one of my embarrassing public scenes with Calvin. They happen regularly but for some reason I never write about them here.  Probably because after being embarrassed in public I don't see any need to re-live those moments and also I sort of feel like it is just complaining and like my cousin says, "there is nothing so bad that complaining about it doesn't make it worse." In spite of myself I will record at least one of these moments for my own records.

Today ....

Dave and the girls went out of town to visit some cousins so I was home with just calvin and the baby!  I decided to take Calvin on a mother/son date to a  place of his choice. He chose a breakfast place.  He ordered what he wanted but when it came he said he changed his mind and wanted something else. I waited him out while I ate to see if he would just eat what he had ordered. Sometimes if he is chatty and in a good mood he will be flexible and go with the flow.  I finished eating and Calvin was still pouty and upset because he wanted different food. I wasn't sure if it was a good idea to order more since he might not have liked that either and the baby was starting to be to squirmy to stay in her seat.   We were still waiting for our receipt and a box for his food he didn't eat.

Calvin opened a sugar packet and dumped the sugar on the floor. The lady sitting behind him about had a fit watching him do that. Within a few minutes he tore up our receipt and threw that on the floor too. meanwhile I was trying to map out an escape plan. I had a baby to carry, plus Calvin to carry, plus my food. Not possible. I paid my bill and looked around the room for who I would ask to  help me.  Then Calvin picked up the ketchup and started squirting it on the floor and the lady behind him said "NO!!!! Don't do that!"  I told her she wouldn't help him by getting upset and cleaned up the ketchup. Then I asked this lady if she would walk me to my car and hold baby Jo for me. She was not eating anyway -- she was talking about what she was seeing!   She  was a little surprised but reluctantly agreed. I handed Jo to this stranger and Jo started crying.  I tried to escort Calvin out but he threw himself on the floor. Some guy offered to pick up Calvin but Calvin is 85 lbs and kicking and difficult and I didn't want this guy to get hurt.  I tried to talk Calvin into cooperating  but to no avail. Finally I let this man help me with Calvin. He helped drag Calvin out of the restaurant  As we walked past the front desk of the restaurant, Calvin tore down their Christmas tinsel across the front desk.  We made it to the car and luckily Calvin hopped in and started honking the horn instead of trying to run away or do something else crazy.  I took Jo back and loaded her in as well.  Both of my helpers were flustered but compassionate towards me.  

So much for stopping at the store on the way home to get groceries for dinner tomorrow....

This kind of things happens frequently.  For sure not every time we go somewhere but I wouldn't call it a rare occurrence. Fortunately with Calvin in school every day I can do most things I need to do without him. Also, sometimes I can see that he is in no shape for going anywhere and cancel plans or modify plans to prevent a huge scene.

Now that Calvin is so big I can't really handle him by myself, especially with 3 other kids to juggle, one of them being a baby who is a total mama's girl. This makes things dicey. Lucky for me, Dave has been home a lot this year so I have gotten away with leaving Calvin at home with Dave, sending Calvin out with Dave or having Dave stop for me at the store or whatever I couldn't do. It worries me a little bit that starting next summer Dave will be super busy and will disappear from the picture of every day life.   

surgery pics and billing errors

Dave as a parent gowning up pre-op because we knew he'd need to "escort" Calvin to the OR.

Immediately post op in the PACU (post anesthesia care unit). The head wrap was a bit of a problem because when Calvin woke up it was TOO TIGHT and he screamed and fussed until we eventually took it off. The healing was still fine, but it just meant more swelling.

After the longest day on record in the PACU we finally left around 4:30. Calvin was feeling pretty good and looking good too.

By the time he got home he was already wiped out.

Day 1 post op in the morning - not too swollen, but got more swollen as the day went on.

Day one post op was Clare's birthday! I'm so glad we had her party a week early. I would not have been up to having a party that day.

By evening, the swelling was pretty bad. But at least his eyes never got swollen shut.

Days 2 and 3 were spent resting and playing wii!

By Friday we were able to go to the museum for an hour or two.

CAlvin has two small incisions just behind the hair line on his left side. The stitches are still in and will fall out on their own. It is taking a while for them to come out. Probably because Calvin showers so infrequently :)

Not sure yet if I think it was worth it. The cosmetic change is minimal and does not correct the asymmetry.  If I had it to do over again I am sure I would have done the same thing.

Last Saturday I got a bill for $6770 from the hospital AFTER the insurance paid their portion. I totally freaked out. Our dr. had told us everything would be covered by insurance. Since it was a Saturday I couldn't call the hospital and see if it was an error.  I was worried sick all weekend. Finally Monday morning I was able to call and the hospital person said, "oh, it looks like we need to adjust your account. You should only owe $95. I'll check with one person and get back to you." He called me back an hour later and sure enough I owe $95 not $6770. I was very relieved and also FURIOUS! What if I would have just paid the money with out calling. Would they have just stolen that money from me? It makes me so angry that hospitals over charge for everything and then wait for insurance and patients to correct billing errors.

pics

blogger won't let me post pictures. says I hit the quota! Not likely since I have never posted any pictures! Hopefully they'll resolve the issue soon!

Surgery day!

Oh what a day! It was much much crazier than I expected. I guess the dr. made it sound so simple that when I pictured surgery I hardly even pictured blood!

Anyway, the case is called endoscopic secondary craniofacial reconstruction.

Here's how our day went:

5:30 am. wake up calvin to take his epilepsy meds and get ready to go

 6:45am Dave arrived with Calvin at the hospital and did all the check in stuff. Calvin was not cooperative for any of that.  Bad sign. Especially when Dave was with him. He usually does really well with dave.  However, we had just had the worst weekend I can remember. Absolutely awful so it was a tough beginning under any circumstances.
I stayed home to get the girls settled in with my friend who came over to watch them, bless her!

7:45 I arrive just in time to see the surgeon and anesthesiologist come by and say hi/answer questions.

8:10 Dave escorts Calvin to OR - he is completely uncooperative and combative as Dave drags him back to the room.  He is restrained and crying as he falls asleep with the mask.

8:15 Dave and I go get food while we wait.

9ish Dr. Cohen comes out to meet us in the lobby to say the surgery went really well.  Dave puts on his white coat to go round on a couple of patients he operated on yesterday.

10ish We are invited back to see Calvin in the PACU. His head is wrapped.  He had started to stir a bit and was upset so they gave him something - percoset maybe- to help him rest again so he is pretty sound asleep.

10:30 Calvin wakes up very upset. Screaming about his head hurting and how the wrap is too tight. He tries to pull out iv's and pull off the head wrapping. They give him demoral. Dave requests no more demoral so then they give him versed.  Then he is screaming about pain so they give him morphine.  Then they give him morphine.  It freaked me out to see them giving him so much medicine!   Since he is screaming and so mad we move to a private room.  While wrestling with  Calvin (I was holding down one side and Dave was holding the other) I start to feel sick with worry about how we made the wrong choice doing an elective procedure on him and that the complications of him messing up his wound or causing injury to his head will be way worse than if we never even did the surgery. I am so worried sick that I start to black out. I tell dave to hold Calvin's arm so that I can sit before I pass out.  I lay down on the floor and the nurses take my spot.  for the next 30 minutes I am useless. I sit in a chair at the foot of Calvin's bed and put my head down. Every few minutes I ask Dave if I look okay yet and he says no!! HA! what a circus!   When I finally feel better I go to McDonalds to get some food for Calvin hoping that if he gets something in his system he'll become rational again.  When I get back to the room he has fallen asleep in dave's lap (where dave had been holding to restrain him from pulling out his IV). By now Calvin has so many drugs in his system now he is out cold. First he sleeps on dave's lap for an hour but then dave moves him back to his bed where he sleeps for the next several hours.

Oh, I should say that at some point in all this they decided to take off the headdress knowing that there was no way it would be on his head for 24 hours as instructed.

2pm Calvin wakes up in a lot of pain again.We give him tylenol with coedine and try  to give him food/drink but he takes about 1 sip of gatorate and  one bite of cracker and then falls asleep again. .  He sleeps again and wakes up an hour later nauseated but on an empty stomach has nothing to throw up.

3pm Wakes up dry heaving again and then right back to sleep.

Around 4:30 we decided we should try to start waking him to see if he would rouse enough for us to get home. We are setting a world record for length of stay in the PACU.  We wake up Calvin and he is cheerful and ready to go home! HURRAY!  He eats a little bit of his happy meal from hours before (yuck) and is super excited about leaving. We get ready and put him in a wheel chair and stop by the cafeteria to get the worlds best cookies.

4:45 heading home

He rides home with Dave and I drive myself.   By the time Dave/Calvin reach the pharmacy in our neighborhood Calvin is throwing up his food. He arrives home at 5:45  back asleep and dave carries him in to the couch.

8:30 awake and hungry. He takes a few sips of gatorate and a few bites of banana bread and gets 2 pills down (antibiotic and tylenol). He still has 4 pills to take so hopefully he'll  keep the first two down and then wake in another hour and be able to take those (epilepsy meds and tenex for sleep (not that he needs it to sleep tonight but it is one you can't stop taking cold turkey)).

9:30. I am pooped! What a day! It was so much more stressful and strenuous than I thought.  Last night I slept on the couch so that if he got up in the night I'd hear him and stop him from eating before surgery. Tonight I'll probably sleep in his room so that I am near him if he needs anything.

Calvin has had general anesthesia several times before and has never had such a reaction as today. It usually takes an hour or two for him to wake up and then he's ready ot have a snack and leave for home. Plus, we usually stop for a big breakfast on the way home and he's never had a problem keeping food down. I think it was different today since he got so many meds after waking up + he does have some pain and I know that contributes to overall feeling.   I hope tomorrow he feels better and is ready to start eating a little bit so he has enough energy to get around. He is too tired to even walk to the bathroom right now.

PS.  Calvin woke up at 11pm to throw up more!  poor child! After this episode, he finally felt feeling better. After having slept ALL DAY he was wide awake and chipper and ready to hang out!  Dave stayed up with him from 11pm-2am watching Spiderman and playing Monopoly. At 2 I got up with him and watched Phineaus and Ferb and he fell asleep on the couch around 3. I made a bed on the other couch and slept with him 'til around 5:30. He was awake and feeling well so I went back to bed in my own bed for a couple of hours before the day began.

Day 1 post op. Calvin has been doing really well today. He feels good. No more sore throat or nausea. He has eaten a few meals and had a good day of TV, nintendo and a few errands when he felt up to it. He also got a good nap in today! He woke up a little swollen and has continued to swell throughout the day. Now (bedtime) he is so swollen his eyes are just little slits. Hopefully the worst is tonight so that he isn't swollen shut when he wakes up in the morning. Since he didn't keep on his head dress he has more swelling than the Dr. would have anticipated but it won't interfere with the outcome, it will just take longer to heal. He is taking tylenol around the clock and that is plenty to help him not have a headache.

Another PS. Dave will have to read this and edit drug names to make sure what I have is accurate.
I will also add a few pics

surgery this week

  Ever since we moved to SD 6 years ago we have had our follow up craniosynostosis visits with Dr. Cohen once a year or every other year.  Dr. Cohen has told us that he thought the brow revision would be a good idea so this has been something that has been on our mind for some time.  Calvin is scheduled for surgery Tues to revise his brow. His brow is very recessed over the left eye making for an asymmetrical face. Everyone who looks at Calvin thinks he looks just fine. However, the asymmetry is magnified and very profound when looking at Calvin in a mirror. We thought it would be best to do what we can to help him feel good about the way he looks and views himself.  We also thought it would be best to do this procedure while we are here in SD so Dr. Cohen could do the operation for us. He is one of the best in the world at cranio facial plastics.  Surgery is Tues morning 8am. We scheduled it about 8 months ago, holding this spot during thanksgiving week so Calvin wouldn't have to miss much school since the kids are already out on Thanksgiving break.

To entice Calvin to cooperate at dr. appointments we always give him some kind of treat afterwards. For easy appointments it is a slurpee, a candy or something simple like lunch at In-N-Out. I think Dave has grown to expect lunch at In-N-Out for himself if he comes along also.  For larger appointments, especially if Calvin needs to cooperate for lengthy testing or has to skip meals in preparation for the appointment, we usually offer him something more valuable such as trip to the store to let him pick a toy (within a set price range) .  Calvin recently had an MRI as part of a study for UCSD. He laid perfectly still for 45 minutes in the MRI machine (miracle of miracles) to earn himself a monopoly game he really wanted. Prior to that he fasted 2 meals to get a Darth maul light saber.  This time he has to fast in the morning and spend an hour or two cooperating with nursing staff (and after that he'll be asleep) and he is very excited to earn another Monopoly game.

Since Calvin is earning a new toy he is super excited about this upcoming surgery! He is counting down the days.  And, as difficult a child Calvin can be, he is very often a very sweet patient.

Surgery entails a 2 cm incision right behind the hair line where the dr. will insert liquid bone. dr. will mold bone on brown and around orbit to how he thinks it should look and then let it sit for a few minutes before closing the incision.  The bone will set within a few hours and then get completely hard/strong over a few weeks. Eventually Calvin's bone will grow over the matrix.

Praying things go well for him and that things go smoothly. If they do, we'll be home by noon the same day.   Also hoping things look good on his face when it is all done.

After surgery we will take a 2 week break from general PE type stuff and  6 week break from gymnastics while the liquid bone sets completely.