earthquake!

We've been at grandma's place due to our house remodel + adding to make it accessible for Eli.  Eli requires bigger room with her own bathroom, and all the doors and hallway need to be widened for her wheel chair.  It has been much more work than we expected and longer than we thought.  I just didn't have time to blog.  And then, this huge earthquake occurred in Japan where all of my families and friends live.  Fortunately, all of my people are fine, but this constant fear never leaves.  One of my friends who lives in northern Japan and has a sister on the ventilator, told me that they had no power for two days and all of her families took turns to manually pump air with amble bag to keep her sister alive.  Anyhow, it's horrible.  I'm just hoping this nightmare will soon come to an end...... 

TLSO - Body Brace

Eli had an appointment for brace fitting.  This is her 3rd one.  She used to be wearing it all the time whenever she was in her wheelchair.  Then, about two years ago, she started to show some discomforts in her brace.  We asked ortho. Dr., and he told us Eli didn't  need it, because brace was not really correcting Eli's scolliosis.  WE kept Eli off the brace for a while.  However, without a brace, her back and shoulders are bent inward so much, we felt it can affect her breathing.  We decided to put Eli back in her brace. With the brace, Eli gets at least 3 inches taller in her wheelchair.  She seemed very comfortable in it.  We will try to keep it on her as long as Eli's comfortable. 

back to home and hospital

Eli had been going to school twice a week from 9:30 to 2:00, accompanied by a home nurse. However, because of the flu season Eli's been constantly sick and missed school alot, we decided to withdraw Eli from school for a while and put her back on home and hospital.  Home and hospital is a system that your teacher comes to your house.  Eli used to have her teacher come twice a week for an hour in her room.  We had an excellent teacher.  Although Eli won't get as much stimulation as she would get in her classroom, she would still get something out of this.  She's missed so many days of school anyhow.  We are happy with this decision.  Hopefully. next summer Eli can go back to her school again.

How we found

Here's how we found Eli's condition.  I had a normal pregnancy and Eli was born full-term.  At birth, Dr. noticed Eli's low hair line and high pallet which often indicate Turner's syndrome.  Chromosomes test came back normal.  I couldn't really tell that Eli looked different back then, except for her ptosis(droopy eye lid) in her right eye.  The only problem was that Eli was not able to nurse, and even with a regular bottle, she was not very good latching on a nipple.  Then, when Eli was 8 weeks old, she had a fever of 102.  Dr. thought it was too high for a little baby, and so Eli was admitted to a hospital where she was diagnosed with urinary tract infection.  Eli was put on a monitor, and it picked up that Eli had some episodes of sleep apnea.  CT-Scan showed a large empty spot in her brain, and soon later with MRI, we learned all about Eli's diagnosis.

Smile!

Eli's smile means so much to us.  She smiles only when she feels good.  That means, we don't get to see her smile every day.   It is usually a very brief smile which lasts about 5 to 10 seconds, and we see them maybe 2 to 5 times a day on good days.  This morning, she smiled big with her whole face, eyes, lips, cheeks, everything!  It was a special treat for me, especially because today is my birthday.  What a wonderful morning to start with.  We are very thankful to Eli's smile.

Fever

Of course, seizures always mean something.  Eli's temp went up from 99 to 103 this afternoon.  She is also having some breathing problems.  She does not sat well without oxygen.  We had a home care nurse today, and the nurse gave Eli breathing treatments (nebulizer), chest P.T., and cough assist treatments.

Jan - 23 - 2011

Eli had some seizurish episodes last night.  Crying with nystagmus (jerky eye movement).  Ever since she had a big seizure with high temp of 107 which deteriorated her brain severely three years ago, Eli no longer has exhibited seizures with her whole body spasm.   We used to be able to tell Eli was having a seizure right away, but now her seizure activities are not very clear.  The EEG taken two years ago showed that she does not have much brain activities.  Last night, it took us a while whether we should give her versed (we like this much better than diastat, because it's half life is very short so that it doesn't keep her asleep for three days.).  We did end up giving it to her, and it helped her. 


seizure meds:
lamictal    trileptal   neurontin  (3times a day) 
versed     diastat    ativan ( as needed)


watching Bears' game

Baclofen pump refill

Eli had an appointment with a spasticity specialist to have her baclofen pump refilled.  Her arms and legs are nice and loose.  Eli was not satting very well all day today, but had a good day.

Jan - 18 - 2011

Eli seemed doing so well last weekend, but it never lasts.  She slept all day on Monday with high heart rate at around 140 - 150.  That always indicates that she is coming down with something.  Sure enough, Eli desat a lot last night, and started getting congestion in her upper respiratory. 

No more leaks!

We recently switched Eli's diaper size from youth to adult small.  Her body measures only 125cm(49'), 25kg(57lb), but her waist is a bit large because of her Baclofen pump inside her abdomen.  Adult size diaper is too wide and loose around her crotch area.  She wets her chucks and clothes almost every time she pees.  I was getting tired of changing her chucks and her night shirts which requires disconnecting pulse-ox and bipap machine every night.   A few days ago, I got an idea of inserting a poise pad in her diaper to eliminate space inside a diaper, and it works! 

Jan - 16 - 2011

Eli woke up with a smile when her younger sister gently caressed Eli's arm.  Dad took Eli to Hippo therapy which she seemed to enjoy, but hadn't been able to attend for three weeks due to her URI.

Jan - 15 - 2011

Eli cried and cried and cried this morning.  I couldn't tell if it was a stomach cramp or her nose bugging her.  She started crying when I put her in her wheelchair.  I quickly took her out of the chair, and held her on my lap to comfort her, but it didn't help.  I ended up putting her back in bed, and a few minutes later she stopped crying.  Other than that, she was contented and pretty much alert all day.