About

February 19, 2011 marked the three year anniversary of our life-changing journey as parents to a child with Batten Disease. In that span we have learned to become advocates and researchers. We have traveled to places we never anticipated and gotten involved with amazing organizations like Childrens Wish Foundation. We have learned to appreciate the small things and to live in the moment. Family has taken on a new level of importance and we strive to make each day as meaningful as possible. Some days are good, some notsomuch. But for the moment, Tatyanna is still smiling and still laughing and some days that is really all that matters.

best alarm clock ever…

May 18th, 2012

they’ll do

May 16th, 2012

On the path to our barn there are bushes with tiny pink flowers. Since 3 of the last 4 springs have been spent in China, I didn’t even know we had flowering bushes.  Not exactly cherry blossom season in Beijing…but I like them. :)

 

 

May 15, 2012

May 15th, 2012

This morning I wondered if  we had finally attained some sort of toe hold.  The mad scrambling had quieted and things were starting to feel restful.  Tatyanna has been increasingly alert and happy.  So happy.  Her smiles and high pitched squeals making a welcome return to our house.  Last night was the first in several weeks that didn’t have me waking up to do saline masks or chest physio.  Her sats remained high and her breathing was clear and easy.   I’d love to tell you that I enjoyed  an night of blissful slumber but the reality is that every two hours so I would find myself peering into the darkness at my sleeping daughter (who was enjoying the unbroken sleep) to make sure that all was well.

By late afternoon we were snuggled on the day bed on the deck, the sun warming our winter white toes and wrapping us in a comfortable warmth. Tatyanna was having a good day and clearly enjoyed that antics of her little sister who was busy digging in our newly planted herb garden.  .

Then, as if roused by the sense of peace, the beast awoke.  Without any warning whatsoever Tatyanna went from happy and smiling to lethargic and non-breathing, her lips a shade of blue that is becoming far too familiar.

It wasn’t the longest apnea type spell that we’ve seen…but it wasn’t the shortest.  All told we had her breathing independently again within ten minutes.

But, ten minutes can seem like an eternity.

As I sit and type this, it feels surreal.  Did that really happen?  Again?  The false sense of security that we had been lulled into is now replaced by a feeling of unease.

We are reminded once again,  while the kaiju we fight may rest, it never really sleeps.

 

 

 

may 14, 2012

May 14th, 2012

Remedy for writer’s block/photography slump – post pictures of teeny tiny kitties….and hope no one will notice. ;)

 

sometimes you just have to smile and walk away…

May 11th, 2012

“That must really suck for Tatyanna.  She doesn’t get to walk or talk or eat anymore.  And, it really sucks for me too.  I don’t get to play with her anymore”

“But she still likes it when you talk to her or watch movies with her.  See?  She’s smiling right now.”

“She is!  I’m going to read her a story.  How about I read the The Lorax?”

“That’s a good idea.  She loves Dr. Seus.”

“Yeah… well she can’t have a crush on him though….because he’s dead.”

 

 

influence?

May 10th, 2012

Overheard from one of the teenage members of the household, “Oh cool!  Come look outside!  It’s like it’s been photoshopped or something!”

where we’ve been….again.

May 9th, 2012

Not so much an deliberate attempt to be artsy but more a case of forgetting the camera as we ran out the door, hospital bound for the second time in 24 hours. This time they decided to keep us for several days. But, we are home now….and really hoping to stay here this time!


all photos taken with the iphone hipstamatic app

***

Hospital law #163
It doesn’t matter how many academic, grown up, or mature things you look at on the ipad, the moment you decide to play around with your child’s Smurf app is the moment the doctor and entourage will arrive.

flashback on the 1st

May 1st, 2012

Let’s do something different this month.  Instead of a photo, I dug up a very old blog entry from our life on the other side.   I can still remember vividly how utterly crazy and overwhelming that day felt….it kind of makes me giggle now.

Date: June 13, 2006

It was one of those parenting nightmare kind of days. In the morning I dropped Trent off for his yearly week long work “holiday”. He calls it work but anything that involves having time to oneself, the ability to sleep uninterrupted, eating food that someone else cooks and not having to clean anything is a holiday in my books.

The day itself was not so bad, and left me feeling optimistic about the rest of the week.   But, around 4:00 in the afternoon,  it all went drastically downhill.  Tatyanna has had a rash for the last several weeks. I have tried every natural treatment that I can think of with no success. She was getting to the point where she was scratching her skin raw. I, feeling good about the day, decided that enough was enough and perhaps it was time to consider seeing a regular doctor for some relief of prescribed variety.  I called health link to determine if there was anyone close, taking new patients and was given a list of names to chose from.   Dr. Adams. I figured that it sounded like a pronounceable sort of name and was optimistic that perhaps he spoke English and drove the 30 minutes to the west end to see him.

2 hours.  I waited in a crowded waiting room with 4 kids for 2 hours. It was NOT fun.  Tatyanna kept trying to take her clothes off (because they were itchy) and make “snow angels” on the floor. We read every book in the waiting room, played eye spy with the older two, pretended she was a bear in a cave under the chair and counted everything we could think of. I used all of my usual tricks and then some but after two hours, nothing works.  By the time we got to enter phase two, also  known as waiting in the actual office, I was peeling her off the walls.

At this point I was thinking that the change of scenery might be a positive change and kept Tatyanna busy looking at the bone charts and things on the walls. Then Lexi, who never spits up, puked all over my foot. I was wearing sandals.  Once the doctor came in, it was obvious that English was not his first language (the name Moufasa on the wall gave me the heads up)….or even his second. He barely understood me and didn’t understand Tatyanna at all. I still felt ok about the whole thing…until he started sporadically saying “help me!” and pretending to cry throughout the conversation. Apparently he got a kick out of Lexi’s horrified expression.

After a bizarre checkup, he announced that it was either ringworm or eczema. Excuse me ??!!  As someone who grew up on a farm, I’m fairly familiar with ringworm and as someone who also suffers from eczema, I’m familiar with that too. I felt that given the fact we currently live in a city and have not been near any animals other than the dog in a very long time, the latter diagnosis was probably more correct. I suggested that too him and he agreed. A script for cortisone cream and a few more rounds of “help me” and we were out of there. Once at the medication counter, Tatyanna decided that she’s had enough and started alternately trying to bite me and scratch Lexi. I put her down and ask the older two to watch her. She bolted, forcing me to leave my place in line and chase her down. Fortunately she is predictable and we followed her right to the  toy department.  I gathered Tatyanna on one hip, Lexi on the other and returned to the pharmacy to stand at the end of the growing line.  McDonald’s drive through began to sound like an appealing supper time option…and I’m a vegetarian.

Once home, the older two kids decided that they no longer like each other and resume their regularly scheduled routine of incessant bickering. I finally got them in bed and struggled for another several hours to get the the younger two to settle down for the night .

It was a very late night. Trent called around 10 to see how we were doing and told me how he had spent his evening going out to dinner, watching TV and practicing his kanji.

I was very happy for him.

 

 

better days

April 30th, 2012

Almost identical to an earlier post but with one crucial difference.  Do you see that smile?  We have been seeing it a lot lately.

anatomy of a weekday morning

April 29th, 2012

“Morning….again?  So soon?  Says who?  I am NOT in agreeance with this.”

I,  however, am generally in agreement with Tatyanna’s sentiment and once the noisier family members go out the door I snuggle with her while I load up on coffee and surf the net to make sure that all is well and the world has not collapsed while we were sleeping.

“Every morning is a breakfast in bed sort of morning.  I think I will take advantage of that and catch a few more zzz’s”

At this point I usually try to get some housework done.

“Booyah! Take that morning.  I’m awake, consider yourself conquered.”

This often occurs around noon.  I don’t tell her that the morning is over.

 

 

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