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.

Christmas

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.

Sunday, November 14, 2010

Tommys hit

video> The funny thing is Tommy was on 2nd when the batter hit it to the pitcher. He ran to 3rd and the pitcher ran home. Tommy then without anyone saying anything ran home. The pitcher never saw him until Tommy slid under him as he stood on home base. Antlers Up!
>

Thursday, October 21, 2010

William's Gardian Angel

We had an experience with William's Angel recently, he's been having heat related seizures, and needs medicine for them to stop. Also, needs O2/breathing treatments with them. We were at brother's Baseball game, and the alarm went off at the house, and I get a call from the police, I try to tell them to just leave it alone and let it go I'm sure it's nothing, but they were already headed out to check on it, he says he'll call me back when he gets to the house, so then Rob get's another call about the front door going off again, and then 5 min later another call about the back door going off. I tell him just ignore it it's the police searching the house, and I'm sure all it fine, he's about to leave to go tend to it. Then he makes another snide comment to me about it, so I grab William and head home to take care of nothing. Police man calls to say everything is fine at the house and it's nothing he could find. On the way home I realize that William's eyes look like he might be headed into a seizure (we've had 3 or 4 before). So I get home, house is fine, and he's in seizure mode so I put him on the couch and try to take care of him, hook up his pulse ox and o2 etc (which I have BECAUSE I"M HOME ALL BECAUSE of the ALARM), give him medicine. Anyway seizure lasts he drops o2 while on oxygen (but only for a second, and quickly recovers as long as he's on o2), so I call 911, and we go to hosp (only get o2 and suction at the hospital). And spend the next 6 hrs in the ER sleeping and recovering, and watching the Rangers Win :).

But the angel part is the alarm that started the whole thing was a HALLWAY alarm, the whole reason I was home around the medicine, O2, and pulse ox is because of the HALLWAY alarm. Nothing was in the HALLWAY that could have set it off, and it's pointed level with the ground to not pick up the dog, and the dog never sets it off. I'm convinced the more I think about it, William's Guardian Angel was playing with the alarm that day.

We now have O2, Pulse Ox (finger kind), O2 mask, Meds, NG Tube, Breathing Treatment, Neb kit, etc all packed on the wheelchair.

Saturday, October 16, 2010

Tommys first hit out of the air!



Tommy did a great job at his baseball game and hit it out of the air while the coach was pitching the ball instead of off the tee. I'm so proud of him.

Unfortunately I was home/ER With William, he had another episode brought on by heat today. We've had these about once a month, for the past 3 months. They seem to last from 30-45 min before he comes out of it. During these times he needs o2 and breath very shallow. Luckily we have O2 at home now, and 2 of the times we've been able to deal with it at home. This one we probably could have dealt with at home also, as all the ER did was give O2 for the first 30 min, and suction him; both of which could have been done at home.

Monday, October 11, 2010

Sleeping with pumpkins 2

Tommy took one too.

Sleeping with pumpkins

Lydia bought gourds and pumpkins to decorate the tables at our house. Micah played with one most of the night and decided that he wanted to take the pumpkin to bed with him too.

Sunday, October 3, 2010

Made it to Church on Time by myself

Made it to Church on time by myself with all 3 kids, and even made a stop before getting to church.

What was even better Micah was pushing the Walker, Tommy pushing the wheelchair with William in it, and I had my hands free where I could have had the new baby in them post arrival in Feb!  They were great big helpers!

Friday, August 6, 2010

Tommy's Allergy Test

Got Tommy's allergy Tests back, and it's off the charts in may areas, He can eat: chicken, Lamb, Pork, Beef, No Grains, No Nuts, Fruits (except melon, and Grapes), a few veggies, No beans. The Doctor said his results compare to kids she sees with autism and sever ADHD. We have to meet with a nutritionist and do more test on URINE and STOOL.

Doctor says he has a leaky gut and can't absorb what he is eating properly.

And we have to do digestive enzymes with each meal, and we'll figure out from the urine and stool what we need to supplement with.

Sunday, July 25, 2010

William's Wheelchair

William's wheelchair was recently adjusted because he's grown. He's now on some of the last settings for the seating system, and will need a new seating system if he grows between his hips and knees. His weight is currently 25lbs 4oz and 36" tall. He's only an inch shorter than Micah and about 4 lbs lighter.

Also, his wheelchair in the new settings is too heavy for me, or too big. I can no longer lift it into the vehicle (about 3 feet off the ground), so I'm looking into a lift for the exterior of the vehicle to hold the chair so we can still take it with us when we go out. These turn out to be quite expensive, and insurance doesn't cover them at all. Here's a link to the one that best fits our vehicle. The cost for the lift would be about $1700 + $300 for having the hitch installed. So about $2000.



William's Doing Well

I haven't posted in a while because things have been going well and I didn't have much to say. Our GI doc visit recently went well he said William had gained 2 lbs since our last visit, and was a good weight. He said this is how we want to keep him. We don't want him to get fat, we want to keep him lean and muscular.

Tuesday, July 20, 2010

Nanas



Here's the cousins dancing in hula skirts after Haley's summer fun party.

High seas VBS 2010



Here is Tommy participating in VBS this summer in June! IT WAS A BLAST!

William PT therapy



Here's William during his PT therapy session, holding a sit for several minutes. This is a huge accomplishment.

Saturday, June 19, 2010

Fridge DJ LeapFrog

I just got some switches for William and he loves them, with them I also got some battery interrupters, but then noticed a toy we already LeapFrog Fridge DJ had modified for a switch was $66 modified 19.95 on amazon with free shipping if you have prime shipping.  I took the toy apart and modified it with part of the battery interrupter for free, I did have to solder some parts inside the toy to get it to work where the switch pushes the button instead of just using the battery interrupter.

Can't believe it's $45 EXTRA to purchase a toy already modified...

Saturday, June 12, 2010

William's been sick then well then sick

April after I was laid off William caught a stomach bug, and ended up in the hospital dehydrated, then he got better gained 2-3 lbs, then caught a really bad cold and ended up back in the hosptial with pnemonia, then we were discharged, and had a sick nurse, and caught another cold, had bronchitis 2 weeks later and almost back in the hospital, but were able to treat it at home and 2 and half weeks later he's finally eating again and doing well, and gaining weight again.

Sorry Dog was found

Yes the dog was found...sorry I haven't posted sooner. Animal services showed up at our door at 8pm and said they had him at the shelter and had just scanned his chip. Please CHIP your dogs!

Thursday, May 13, 2010

Dog Missing


IMG_2524, originally uploaded by conradzone.

Our dog is missing Please help us find him!

Tuesday, April 27, 2010

Prayer Quilts

Picked up prayer quilts from a church prayer quilt ministry, the kids love them. Micah picked trucks, William picked race cars, and Tommy picked an I-Spy Quilt.

The quilts have strings on them you can say a prayer and tie a knot in to have prayers tied into the quilt just for them, so they can wrap themselves in prayers.

Thursday, April 22, 2010

Micah Conrad Heart Update

I've scheduled appointments with the heart surgeons (2) and another cardiologist for consults:

We meet with the 2nd cardiologist Friday Dr Fryer

We meet with Dr Eric Mendeloff the Surgeon at Medical City on Friday April 30th

We meet with Dr Vincent Tam Surgeon with Cooks Children's in FW on May 12th

Found out Micah with need Heart Surgery


Micah (25 mo) was diagnosed with an ASD Atrial Septal Defect (June 2009 at 15 months) (hole between the top two chambers of the heart).  Congenital defect.  We were told the protocol is to wait for a year to check it again and see if it gets smaller.  So we waited almost a year, but went for follow up early, due to my job loss.  Well size hasn't changed it's a significant defect, and there's no urgency to repair it, but it will need repair (protocol online was before school starts at 5), and recommendation is sooner rather than later due to insurance situation.    Basically with his defect he would have significant reduction in his life expectancy, and would get to a point as a teen where he would have trouble doing things he used to.  His life expectancy for his generation is about 84 doc said, and doc's projection with defect untreated would be about 50.  Defect was clearly visible on the Eco and measured about 8.4 mm or .84 cm in size.  The heart is 1.5 times the size of a 2 year old fist, about the size of a small apple? little larger than a cutie orange. 

Wednesday, April 14, 2010

Is he all there?

They've never been in this world of mine. They are trying to at some level grasp the impact of this to my life, not in their defense, but they are trying to understand something unfathomably to them. So much of the intelligence of a child is based on what motor skills they can do at what age, but I can see the intelligence waiting inside to get out, without a way to express its self because he tries so hard to tell the muscles to do exactly what you and I tell our muscles to do, only they just don't do it. It's not because the brain is broken, but something in the middle. But like You said we are all broken. A glimmer of the eye can express a 1000 words with one look, but you have to be looking and listening to hear it. I hear it everyday, and I try to explain to those that ask exactly what I see, so maybe they will stop and see it. Maybe with their own children who are not as broken they will stop and see it too.

Monday, March 15, 2010

Thank You!

Thank you doesn't begin to even cover it. I've shed several tears of joy over how blessed we are to have raised all the money for William's walker in almost exactly ONE month. Thank you so much for coming to our support so quickly. So far we've raise 2070, $400 of which people have given me cash or check so it doesn't show up on the ticker. I called the equipment company and the amount for the walker come out to with discount to $1613. Half of which we had to put down up front for the order to be placed. I'm happy to report that we've placed the order and are awaiting the arrival of our equipment We had to put $807 down, and we had a almost $300 credit from when we ordered the wheelchair so we only ended up putting aprox $500 down. I'm opening a special account just for William's fund raising, and this account will go only for William's equipment purchases. This money will directly benefit William and his equipment. Next on our list is some speech equipment to help him with communication. We are looking at getting him 2 buttons so he can choose between 2 items and let us know his desires. These are another item not often covered by insurance. We've also barrowed a button in the past to try out and he does well with them. Unfortunately we can only barrow these items for a short time before other children need them, or they have to be returned.

Thank you so much for your support, and if you wish to contribute further I'm leaving the chip in wigit on the blog for you to click and contribute.

Saturday, February 13, 2010

Raising Money for Williams Walker

For those that don't know William has Cerebral Palsy, and in his case it causes problems moving his muscles, and makes it very difficult for him to move his muscles. His CP is a result of an injury at birth, and will not progress. But, there is no cure, and the best treatment is therapy, daily stretching and range of motion exercises to keep muscles from becomming too tight, and to allow him to develop other pathway in the brain to control his muscles.

William is showing some great improvements in trunk and head control. This is the basis for all body movement and essential before he can move to doing other things. We are so proud of his progress. Equipment for kids like William is a continuing need. And getting what is needed is not easy. Recently William just received his Stander, what he needs to be weight bearing on his legs so he can properly form his bones and digest his food. Also it will hold him in the correct posture to help with body positioning. The bad news about getting a stander is Medicaid will not cover a walker for 12 months after getting a stander, and private insurance doesn't cover this type of equipment at all. So we need to raise the funds ourselves so William can have a walker. You ask why we don't just wait 12 months. William is also showing a GREAT desire to MOVE. If we don't encourage this desire to MOVE it may just go away. Here's a short video where you can see William in a Walker just like the one we are ordering, and see how much he enjoys moving.

http://www.youtube.com/watch?v=Djtg8dqTtcw

He can interact with his brothers better, and play with toys, all of these are needed activities for a 2 year old. Please consider a small donation to assist William getting the equipment he needs. If everyone contributed $25-50 we would have the money needed after just 40-80 people.



Thank you for considering supporting William in his therapy needs.

PS: Any extra will be saved for the next equipment purchase; strictly for William's benefit, he will likely need next speech assistance devices for helping him communicate next, as his motor trouble also affects his speech.

Thursday, January 28, 2010

Busy fun day

My head hits the pillow and I'm asleep. Busy fun day. Therapy, Zoo, naps, therapy, faith formation class for Tommy, swim for Micah, back to pick Tommy up, dinner, bed, clean house, cranial appt, store, feed William, pump, bed

Wednesday, January 13, 2010

Micah and Potty

We started teaching Micah about the potty over my Christmas break, and have had a few succeses, and he's holding it longer. Does really well on outings where he's back packed, and Tuesday this week he had a success on the big potty with the sitter, and a poop later in the afternoon.

Tuesday, January 12, 2010

William eating well

William ate 4 bowls of food Sunday. 3 big bowls yesterday and 3 today
already probably 4 by bed time. Nutrition was out yesterday and he
grew 1/2 inch in 2 weeks and gained 12 oz. A big gain after 1 month of
losses. Finally not throwing up every am and hardly ever during the day.

Lydia Conrad
Mommy to Tommy (3yr 3/06), William & Micah (1yr 3/08)

Tuesday, January 5, 2010

Ball pit

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."