Tuesday, March 31, 2009

officially invited

Cayden is 9 Years Old!!!

Come and celebrate with us on
April 4th,2009
At noon in the Collinsville City Park
We will have hotdogs, chips, soda and cake and ice cream and tons of fun 

Call for questions/directions or email us.
Hope to see you there!

Monday, March 30, 2009

happy birthday cayden!!

Today my baby is 9 years old. He has been the best son that we could ever ask for. He is loving and sensitive to others. He is also the funniest kid I know, even when he's not trying.. he always makes us laugh. He is the only one that can make his sissy smile at times.. We are so blessed beyond words that he is happy and healthy and I thank God for him every day..

he had chicken pox when he was 4 months old.. he hardly even fussed.. they were in his mouth, ears, everywhere...

He never cared for baby food much, but we tried anyway.. he is about 6 months old here..this is one of the looks that Ella gives that reminds me so much of him..

Helping daddy cook was his FAVORITE thing to do.. I can still hear him say "no daddy, I do it myself!" he slowed things down a bit, but we wouldnt have it any other way..
this is his 2nd birthday.. he was the most adorable toddler

and this is our guy now.. He is the best son and absolute best brother to Ella. He continues to amaze us with his whit and charm and great attitude.

Happy Birthday baby.. We love you so much and are so thankful for you and the great young man you are turning into..

Friday, March 27, 2009

change of address

I am pretty sure we are going to put in a change of address to have our mail sent here... we are not going to get to go home yet, when they took her off of oxygen she failed =( and she is only requiring small amounts, and do not want us to have to go home with it. So they are decreasing her ativan and see if this helps increase her breath velocity..(bigger and better breaths) .. maybe this weekend or early next week..Monday is Caydens birthday, it would be great to be out then.. We miss him and he misses us so much... ugh...gloomy day...

where oh where is our Dr House with the magic cure???

Thursday, March 26, 2009

too lazy to type anything original

from carepage again:
Dr. S (our neurologist) came in this afternoon and gave us our options...one of which was horrible!.. anyway we have decided to take her home on meds and return at least once a week to his office and he will adjust her meds. Also he is calling an epilepsy center in Ft Worth and seeing if we can get in asap. There is a 4 month wait, but he thinks he can pull some strings since she is so fragile. So as soon we know a date we will start planning that. I am going to look into angel flights or something like that, so we arent driving her 5 hours with her. She is still seizing, but he has been watching her eeg and dooesnt think she is in any danger, but we will bring her in if we detect any. In the morning a lady is coming in and going to go over some seizure education with us. I am nervous some about taking her home, but there is not anything we cant do at home that they are doing here. Plus she is surely going to be less stressed and more likely to relax. She continues to need a lot of prayer, so please remember her..

sidenote: does anyone ever wish Dr House were a real doctor? or the dr's on greys and ER? hmmm well okay.. just my random thought for the day... =)

Tuesday, March 24, 2009

copied from her care page...

please continue to pray for Ella.. I just copied this from her carepage instead of typing up a new one.. but here is the newest..

number 6
at 2:45am she had to get another IV.. I really feel like since she has a good one now, that maybe they should go ahead and use it to sedate her and put in a central or femoral line... they had a very hard time finding the last 2.. I think she is about tapped out.. she is still ticking away and mostly sleeping, she did open her eyes some, but is still too out of it to make good eye contact =( this all makes me so sad..at least the other times she has felt bad she would at least look at us and pucker, and cry...but she was awake..she is only on her mito cocktail and keppra, so it is obviously her body making her sleep, and not drugs..so I guess it is what she needs..Maybe a little selfish of me to want her to be awake.. Jay will be up in a little bit, maybe he can get her to open her eyes some..she listens to him when he talks better than me (probably because she hears me talk all of the time!) Before we came in Sunday morning, Jay got a huge smile out of her...so cute..its a site we havent been seeing alot of lately..but we will, once we get her back to "normal"..

here she is this morning.. she has on o2, all the normal leads, foley and a internal thermometer and an IV in her head again and of course her G tube.. she is all kinds of hooked up =( I think once she wakes up they will be taken off.. probably by her, she doesnt care for hoses and wires much..

Monday, March 23, 2009

back in the ICU...

Ella is back in the PICU..she was having seizures pretty much all day Sunday.. she is still out of it, and still "ticking".. its hard to see her like this...I would rather her be crying and cranky.. please pray for her, and for the effects, if any, to be minimal.. for the full story check out the story on her carepage...

Thursday, March 19, 2009

a group I never wanted to be in....

another mito mom had this posted on her carepage... thought I would share...

Many of you I have never even met face to face, but I've searched you out every day.

I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you.

You are well worn.

You are stronger than you ever wanted to be.

Your words ring experience, experience you culled with your very heart and soul.

You are compassionate beyond the expectations of this world.

You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.

A very elite sorority.

We are special.

Just like any other sorority, we were chosen to be members.

Some of us were invited to join immediately, some not for months or even years.

Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms and during ultrasounds.

We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films and heart surgeries.

All of us have one thing in common.

One day things were fine.

We were pregnant or we had just given birth or we were nursing our newborn or we were playing with our toddler.

Yes, one minute everything was fine.

Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.

Something wasn't quite right.

Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs.

Some of our children undergo chemotherapy.

Some need respirators and ventilators.

Some are unable to talk, some are unable to walk.

Some eat through feeding tubes.

Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's.

We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable.

We have educated ourselves with whatever materials we could find.

We know "the" specialists in the field.

We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments.

We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them.

Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive and to flourish.

We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy.

We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects.

We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can't understand what it's like to be in our sorority and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother."

We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays.

We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween and we have found ways to help our deaf children form the words, "trick or treat."

We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas.

We have painted a canvas of lights and a blazing Yule log with our words for our blind children.

We have pureed turkey on Thanksgiving.

We have bought white chocolate bunnies for Easter.

And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy.

We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent.

And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always.

We never stop believing.

Our love for our special children and our belief in all that they will achieve in life knows no bounds.

We dream of them scoring touchdowns and extra points and home runs.
We visualize them running sprints and marathons.

We dream of them planting vegetable seeds, riding horses and chopping down trees.

We hear their angelic voices singing Christmas carols.

We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall.

We are amazed at the grace of their pirouettes.

We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

By Maureen K. Higgins

Wednesday, March 18, 2009


the dr's do think all of her symptoms are completely due to the roto, and do not think it has anything to do with her mito.. the seizures were probably only from the fever, but since the neuro is out of town this week, we are going to keep her on the anti seizure meds until we hear otherwise.. she is sleeping a ton and we will try to resume feeds tomorrow.. she is not running fever today, and hopefully tomorrow will perk up... I hate her being in here..it is not comfortable for any of us, but she is the one being poked in the head for an IV...UGH!!! anyway..its bad for her to have this, but we are sooo thankful it is not a mito complication...thanks for all of the thoughts and prayers!! keep 'em coming...

The dr's and nurses have said that Roto is going around like crazy..be sure to wash wash and wash again, your hands and your kiddos hands... and if your kids show symptoms, try to keep them hydrated and out of the hospital!!!!

Tuesday, March 17, 2009

back in the hospital

We are back in the hospital with seizures and roto virus..no telling how long we will be in this time.. please continue to pray for Ella and a speedy recovery..for full story or the "play by play" go to her carepage..link is on the side. thanks!

Saturday, March 14, 2009


for those who dont go to her carepage and keep up, she has been running a fever since her surgery, we took her back in yesterday and they didnt find a whole lot on lab or xray, nothing that would cause a fever. Today she is still running between 102-103 temp.. please say a prayer that this goes away.. I really dont want her to have to go back in the hospital.. she just is not comfortable there.. thanks

Tuesday, March 10, 2009

back to the hospital

this time only for 1 day and 1 night (hopefully) Ella is going to have her feeding tube port placed 7:15 am Wednesday.. please remember her and pray for the procedure to go well and a speedy recovery! thanks! I'll update once she is out :)

Wednesday, March 4, 2009

Bake Sale Fundraiser!!!

This Saturday March 7th
in front of Alexanders Furniture store.. right next to Reasors on Hwy 169 and Hwy 20.. From 10am-??..
All proceeds will go toward Ella's medical account. Come by and say hello.. Depending on weather/wind and how Ella is feeling we should be there =)
See ya then!

and I cant leave without posting a pic :) this is the famous Ella pucker..