Monday, December 27, 2010

Just to log for my records

We had another seizure on Dec 26 as we were heading home from Rob's parents house, it lasted about 6-8 minutes. Between 6:30 and 7pm (don't have exact time), we had everything loaded in the car to come home, I noticed he was seizing in dad's arms (had this going the sleep look, but his eyes were off to the left instead of his usual right stare), so I grabbed the pulse ox (130s heart rate, and 100o2), and o2 and other emergency equipment, gave him a little time to come out on his own, and then gave 1mg Valium/diazepam rectally, with in 2 min after the dose he was awake, but very scared tightly clenching mom, and disoriented. I gave aconite for fear homeopathic, and Ruta because of some high tone after the seizure. The aconite calmed him down, and after the Ruta he started vocalizing some. He stayed awake till we got home and fell asleep right before 10pm.


We had a great Christmas, the Kids enjoyed tons of toys, and having both grandparents over to watch opening them. The highlights were Tommy got a new bike and some transformers, Micah got a new tricycle as well as tons of Cars from the Movie Cars, and William got lots of table toys, and a Mavericks jersey. Dad got some new underware, and light fixtures, and Mom got some ornaments, a rosary blessed by the pope in Italy, from Rob and Candy's trip to Italy this October, and a St Dymphna medal (St of mentally afflicted/epilepsy). We had christmas morning at home, naps and then headed to my parents house in Plano, then we headed south to Mansfield and Jason and Jenny's house, and finally to Nana's and Papa's for the night. Of course I forgot the Night feeding at home and had to make a "quick" trip to Plano so William could have his night feeding, and I could play night nurse.

Wednesday, December 15, 2010

2010 christmas card

Leave me a comment with your email/mailing address if you want to receive our christmas card this year :).

Merry Montage Christmas
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Tuesday, December 14, 2010

Our Weekend

We enjoyed a weekend out without kids, or seizures or anything. it was a wonderful weekend, and Rob and I enjoyed our time together, and just played what we did by ear. We had a great friend to Watch William, Wendy a nurse took her wonderful time to give us a break, and Nana and Papa enjoyed the time keeping Tommy and Micah busy.

We took the time and headed south with no particular destination. We left around 9pm and stopped in Waco for the night, had breakfast the next morning and headed on to San Antonio, we ended up staying on the River-walk and had a great time just enjoying the city. This was our one last get away before our new baby will join our family in February.

PS: This is the first time I've mentioned our new baby we're expecting in February. It's one baby this time, but we're waiting to find out boy or girl till he or she makes an appearance. We're excited to add a new sibling for our boys, and expect that William, Micah and Tommy will all dearly love the newest baby. Everyone is very excited. Tommy even has a name picked out and declares that it will be a Girl named Siena, no matter how hard I've tried to convince him otherwise. Micah used to say he had a baby in his belly too. We love reading books about new babies arriving, like "Welcome with Love" and "Angel in the Waters".

More seizures

Dec 9th 30+ min Seizure during our 24 hour EEG lead to EEG being called off, and transport to the hospital, started with a big jerk to the right and then spaced out to the left. Stopped seizure with 1mg Valium, and gave o2 during seizure as a precaution.

Dec 11th 90+ min Seizure, Jerking hand and head tonic clonic in motion, was given 3 mg Valium each mg separated by 30 min before seizure stopped. Breathing stable, and Valium given orally because still able to swallow.

Sunday, December 5, 2010

William's Seizures

William has been having seizures about once a month, with an increase in frequency around some adjustments we've made in William's medicine. Currently we're using his Valium to treat the seizures till we get into see a new neurologist.

Seizure Dates (so I have them for my record):
July HEAT Related (unknown sunday) about 1pm gave valium and H2O 1mg 8oz
August (26th) HEAT Related gave valium and H2O 1mg ER Ambulance visit CT Scan
September (19th) HEAT Related
October (16th) HEAT Related ER Visit 1.5 mg valium followed by vommiting
November (6th) Right after feeding at home sat morning resolved with homeopathic remedies/on it's own.
November (14th) (daily valium lowered one week prior) Diastat valium 5mg followed by coma for 7 hrs
November (18th) Medication discontinued after Diastat Twitching on the right side hand and face, medication restarted
December (5th) missed valium dose previous day, and pulled off of suppliments due to urine catch, short seizures multiple 2 am several in the evening space out type, resolved without treatment, followed by tiredness and sucking

Our Pedi is doing a urine test to test for the cause of the seizures, we see a new neuro on the 16th of December, we have MRI scheduled for Tuesday the 7th, and 24 hr EEG for Thursday the 9th. Our Pedi's chiro is treating for parasites he's found in the gut with nutrition analysis.

Mother of a "Special" Child

When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all

I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough

The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you

This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak

So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry

To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday

But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good

But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too

A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.

God Choose a mother for a "Special" child

Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjotie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But she has patience?" asked the angel.

"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."