Wednesday, September 29, 2010

Baby Steps

M had her follow up EEG this morning.  I LOVE our Neuro in that she always reads it and sees us immediately following to discuss what's next.  Today, she walked into the room with a nice smile on her face.  M's EEG has improved.  The activity on the left side of her brain looks....almost.....wait.....get this.....NORMAL!  I'm not sure we've ever heard that word out of any Dr.'s mouth with regard to M in any respect.  The right side is still showing lots of disorganization and spikes (more on that in a minute), but not necessarily hypsarrhythmia. This is really excellent news.  She started to discuss weaning her off the Sabril (her IS med), but I cut her off.  She's only been on it three months and her response has been really good.  That medication brought her back to us and I'm not quite ready to take the chance of going backwards.  We'll continue it for three months and if she continues to do well, begin to wean.

So, the right side.  That's another story altogether.  The right side is where the bulk of her damage is.  Despite her two Grade IV bleeds being on the left and the one Grade III bleed occurring on the right, it is where she has had the most shunt trouble, thus the most surgical intervention.  Back in February, in one final attempt to control the fluid in her right temporal horn and right ventricles, our neurosurgeon filleted the entire ventricular matrix.  Sounds lovely, right?  In any case, it is also the location of most of her PVL.  The disorganization is to be expected, as is the left-sided hemiparesis that she has.  The spikes are new and are an indication of a new type of seizure.  We were told when she was diagnosed with IS that she was at very high risk of developing other types of seizures or even Lennox-Gastaut Syndrome down the road.  We've tucked that info away in the back of our brains to worry about another day.  Over the past few weeks we've noted some atypical behavior and questioned if it was seizure activity.  Today, M's neuro diagnosed her with Complex Focal Seizures.  It is very possible this new type of epilepsy is replacing her IS.  She is starting a new medication and hopefully she'll respond well to it and we'll get good control quickly.  We're also adding an Omega-3 supplement.

Overall it was a good news/bad news type of day, but I walked away feeling very positive.  Small victories and baby steps are what we thrive on.   

Tuesday, September 28, 2010

T minus 2 days.....

Let me preface by saying that I LOVE FALL.  It is definitely my favorite time of year.  I love the cooler weather, the trees changing color, fall festivals, carmel apples, pumpkins, I could go on and on. 

On the other hand, I fear it.  October is the official beginning of the dreaded Flu/RSV season.  M remains extremely susceptible and vulnerable to bacterial and viral infections.  She could easily pick something up that could land her in the hospital....or worse.   E is in school 4 mornings per week and he is likely to be the primary culprit of sneaking evil germs into the household.  Kevin works full time around a lot of people and I work in part time in health care.  We're all potential carriers for invaders.

I feel good about the plan I have in place to face the next six months and am going to try so hard to not obsess, but I also have to do what is best for us.  There will probably be limited trips out to stores, restaurants, etc.  We most likely will not attend every function to which we are invited.  This is not because we are antisocial or don't like you - we just need to stay safe.  We may remind you to wash your hands or ask that you not visit if you or someone in your family is/has been ill.  Please don't be offended and please don't tell me that "kids need germs." 

Hopefully we can keep the illnesses mild and to a minimum.  Going into fall/winter, it helps that we already have great habits.  Upon entering the house, shoes come off at the door and hands are immediately washed.  Even E does a great job of this without being reminded (most of the time).  I'm not a fan of chemicals and generally use all natural cleaners, but for the next six months we are well armed with Clorox and Purell. 


Wednesday, September 22, 2010

Line Stays

Surgery went well.  M did okay, despite needing enough anesthesia to "knock out two large adults" (direct quote from her anesthesiologist).  She always requires a little.....extra juice, but today it was pretty extreme.  Her ENT discovered two new subglottic cysts which he treated and also used the balloon to dilate her subglottic stenosis.  Because things weren't as beautiful and perfect as he wanted them to be, she'll have to head back to the OR in a couple of months to check it all out again.  Because the anesthesiologist couldn't find a suitable spot for venous access, the line stayed in.  I'm bummed, but it's really okay.  Whatever's best for my Dolly!  M had an extremely rough time coming out of the anesthesia, probably due to the amount and combination of drugs she received.  She also developed some very disturbing swelling around her distal shunt.  Her neurosurgeon was paged and it was his feeling that the fluid accumulation was due to a little fluid overload since she received so much in the OR.  Hopefully it will have gone down by morning.  Currently, M is resting fairly comfortably and I'm settling in for a little rubber couch nap. :)

Surgery and pictures

"Goodbye" central line - we will miss you...NOT!

Surgery number 17 (I think) is underway.  I'm so grateful M was healthy enough to go in today.  I did not want to postpone yet again.  When her surgeon popped in to chat, he mentioned that IF he goes in and finds that everything looks perfect and beautiful, she will likely be able to head right home this evening.  THAT would be incredible!  Her central line is also scheduled to be removed while she's in the OR.  She's had it for over 9 months and other than one surgery and one blood draw, it's not been used since April.  We flush it every night and change the dressing every three days, and it's not THAT big of a deal; but, it's one more potential source of infection and one more thing to keep track of.  I'm nervous, yet happy to see it go.

Here's a few pictures from the past several weeks just for fun.
Finger coils

Who do you think won this race??

Always the best big brother!
Full tummy - time for some snuggles come he always thinks of alternative uses for toys?  Looks pretty safe, doesn't it?

Monday, September 20, 2010

Tooting my own horn

I was reminded by my doctor the other day (during the dreaded annual physical) that it's been just over ONE YEAR since I quit smoking! YAY ME! She also confidently reminded me that the extra...oh...fifty-ish pounds I'm carrying around is still far healthier than smoking. Hopefully next year I can report major success in the fatso category, too.

In other breaking news - I picked up E from school today expecting the usual stern teacher conference and was pleasantly surprised to receive a very good report. She said he was her best student of the day (out of 16 kids)! YAY E! I am so proud of him today and even better was how incredibly proud of himself he was. He was just absolutely beaming.

Sunday, September 19, 2010


Normally, I hate that word - no, I despise it. I TRY really hard not to use it. Nothing bothers me more than hearing "I'm so busy, I can't..." or "I was too busy to..." or "I've been so busy I haven't been able to..." Everyone's busy, no one has enough time for anything, "busy" is just an excuse for not doing something you should've, would've, or could've done but chose not to. So, I'll just say - I'm not real sure what happened to my week. I'm sorry I've not posted. This past week was our first week of my "new" (and improved) schedule. I worked a grand total of 13, yup count 'em 13 hours! Still, it seemed I was running around like a mad woman. Two trips each morning to and from school which is 15 miles away, takes a chunk out of the morning. M didn't have any doctor appointments this week, just four therapy visits. Taking care of my kids is.........hard work! They are silly and needy and so much fun!! There are a lot of little projects around here I want to get done and of course, I feel like I have to get them ALL done RIGHT NOW. Kevin keeps reminding me that everything doesn't have to happen the first day. He's right - shhhh, don't tell him that. ;) I think in time, I'll learn to adapt to this new way of life and we'll get into a groove of sorts. I've signed myself up for a YOGA class and E up for Basketball and Swimming Lessons. I plan to get M into the pool a couple of times a week to use her Waterway Babies ring.

A good portion of my free time this week was spent on the phone fighting the system once again. Back in July, we submitted prior authorizations for M's adaptive bath seat and wheelchair. The first week of August, our primary insurance approved it all at their contracted 75%. That left 25% for her Medical Assistance to cover. They have reviewed and sent back the PA's FIVE TIMES. Each time it's something completely stupid and arbitrary. Because M loses her primary coverage Sept 30th (don't get me started on that one), time is of the essence in getting this stuff ordered. Finally, fed up with they way the system "works" (or doesn't), I contacted our Senator. Long story short, a community advocate was contacted and she initiated a string of communications with the folks at MA. On Thursday she submitted a formal request to review and expedite the PA's AS SUBMITTED per Sen. Fitzerald's request. On Friday morning I received a call from our vendor stating she had all of the APPROVED PA's in her hands. So, we'll be getting M's equipment - hopefully by our Sept 30th deadline.

Currently, M has a cold. It was really bad on Friday, but seems to be getting a little better. She is schedule for surgery on Wednesday and I have my doubts that they are going to allow it to happen unless she makes a truly miraculous recovery! It has been postponed THREE times already. I guess, on the bright side, it's good to have a postponable surgery. That means that whatever needs to be done is definitely not an emergency - we like that!

E has earned a set of horns from school. I'm not sure what happened, but it's as though a switch was flipped and he became this ignoring, potty-mouthed, sassy, tongue-sticking-outing, drama queen. I know it's partially just being 4, partially the loss of his long-term teacher and the introduction of a sub, and partially the other sassy boys in his class. I don't know when it will end. I don't know if I will make it through this stage with my sanity intact. All I know is that we sound like broken records and he's getting permanent flat butt from hanging out so much in his time-out chair. Hopefully he'll remember soon that disrespect is absolutely forbidden in our family.

In very sad news, the govt. of Kyrgyzstan has allowed another precious child to die in orphanage care. This beautiful girl was matched back in 2008 with a wonderful American family. She developed hydrocephalus, which went untreated initially. She suffered irreversible damage before receiving medical intervention. Sadly, she lost her battle. As a mother to a child with very complicated hydrocephalus, this infuriates me even more. This little girl did not have to die. She did not have to suffer for two years. She SHOULD'VE been home with her family where she WOULD'VE received high-quality care RIGHT AWAY. She SHOULD and WOULD be toddling around her home right now if it weren't for politics and bureaucracy. Hopefully this angel has found peace. Hopefully there will not be more casualties as the delays drag on. Prayerfully, those who are working so hard for the orphaned children and waiting families will be able to make an impact with the powers that be and convince them to free these kids.
Heaven’s Special Child

A meeting was held quite far from Earth,

It was time again for another birth.

Said the Angels to the Lord above -

“This special child will need much love.

Her progress may be very slow,

Accomplishments she may not show.

And she’ll require extra care

From the folks she meets down there.

She may not run or laugh or play,

Her thoughts may seem quite far away.

So many times she will be labeled

‘different’, ‘helpless’ and disabled.

So, let’s be careful where she’s sent.

We want her life to be content.

Please, Lord, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith, and richer love.

And soon they’ll know the privilege given

In caring for their gift from heaven.

Their precious charge, so meek and mild,

Is heaven’s very special child.”

–compliments of ‘Dear Abby’, 12/03/09

Monday, September 6, 2010

Catching Up

Sorry I've been MIA for a week. We really didn't have anything out of the ordinary going on, but it seemed to be busier than normal.

E started 4K this week. I don't know how he grew up this fast. If anyone knows how I can slow it down, though, please share! The first day was a bit.......hectic and......challenging. Okay, so I picked him up and his teacher says to me "I was not impressed with E***'s behavior today." Not exactly what I was hoping to hear, but I did expect a few issues at first. With his Sensory Processing Disorder comes behavior problems. They are not new to anyone, including his teacher, but they are definitely amplified by big changes in his environment and schedule. Add to that there were several new boys who had never been outside their homes before and had no clue how to behave in a school environment and you have a 4 year old BOY with SPD bouncing off the walls trying to imitate his new friends. There was a car meeting, dinner meeting, bedtime meeting, breakfast meeting, second car meeting and a brief morning meeting at school and I'm happy to report the second day was fantastic! Hopefully the trend will continue. We're grateful that he and his teacher have been together for the last 4 months so that is one constant in his school life.

The "Happy Backpack Dance" the night before

0615 darkness the first day of school - I had to be to work super early that day! :(

Ready to get on with the first day! did he grow up so fast??

M is doing well. She had another cold - I know, hard to believe, right? She has been so incredibly interactive and happy this week. She's getting new teeth and they're coming sooooo fast! She has also suddenly found muscles and coordination she never knew she had. When on her tummy, she'll pull her head and shoulders off the ground. She can hold her head and trunk upright with assistance and she is starting to use her left leg more. Throat surgery is rescheduled for September 22. If all goes well, we'll spend just one night in the PICU and hopefully this is her last throat procedure.

Noodles - poised and ready.....

Righty never fails.....let's see if we can get a message to lefty to join in the fun....

Look at that - TWO STRAIGHT (chubalicious) LEGS!!!! Is that phenomenal coordination, or what? Joyous pride at my huge accomplishment!

Four, almost FIVE teeth already

Lounging, "watching" a little TV

Sleepy time

The weather has been Heavenly (by my standards). I LOVE Fall, I LOVE cooler weather, I LOVE when the air conditioners come out and the windows can stay open. E LOVES puddles!

In less happy news, the Government of Kyrgyzstan continues to hold innocent, sick children hostage. Despite making promise after promise, these children are still suffering. They are still lacking nutrition, love, socialization and medical care. There are families waiting to welcome them into their families and yet the powers that be continue to deny these children their basic rights. I don't know how these people sleep at night or look at themselves in the mirror in the morning. Perhaps they should look at this sweet face instead. Please keep all of these orphans and their waiting families in your prayers.

"Baby" K - we love you, sweetie!

Saturday, September 4, 2010

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 go away...
because the loss of that dream is a 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.