Dani’s medication

Dani had another good week.  Today she does down again on the Phenobarbital.  Her current dose is ¼ tab at night.  If all goes well, in three weeks she will be off the Phenobarb.  Dani still has the Keppra, Valium, and Neurotin to tackle.  I can’t wait to get her off these to see how much more she wakes up.  I think it is amazing that even by getting OFF some of her seizure medications, her seizures have decreased.  It really makes me think that all of her 6 seizure medications were interacting with each other and causing more seizures.  How else can you explain how Dani went from having 5 – 6 an hour to now at most 4 a day!  I just wished 2 years ago when this all started that I would have done my research and not allowed Dani to be put on so much medication.  But we thought we had to agree to it because they were the doctors and they knew what they were talking about.  For parents out there wondering if you should put your child on seizure medications, just know there are other options out there.  Dani was probably a pharmaceutical reps dream patient because the doctors really didn’t know what to do with her so here, let’s throw medication at her.  21 has been the most medications we have given her during the day.  When she is off the Phenobarb, she will be down to 15 medications.  Of those 15, 8 are now vitamins or nutritional supplements.  She has made huge gains with her medications.  Other medication she is on is Baclofen (muscle spasms), Robinul (drooling), Glycol (constipation), and Prevacid (acid reflux).  When Dani has another swallow study, I am going to push for an Upper GI done to see if she really needs to be on the Prevacid.  This is the only medication she was on before her brain damage and I think it is still here by default.  Once all of Dani’s teeth push through, I am hoping she can get off the Robinul. 

 Kaylee and Brianna have SibShop tomorrow.  Other than that, just a quiet weekend planned.

Light from Lucas…

I have been reading a book called “Light from Lucas” by Bob Vander Plaats.  It is written by a father of a special needs child.  To be honest, for a short book, I am having a tough time finishing it.  He references the Bible a lot throughout the book and this is what slows me down.  Unlike Bob, I didn’t question God for her initial disabilities.  Dani had problems and we were working thru them.  Then January 23^rd, 2006 came, my faith was shaken.  I wondered where God was then, why he let them hurt her.  Sure he brought her back to us, but this wasn’t our Dani.  This wasn’t our smiley girl that loved to eat.  Instead we had an empty shell of a daughter.  Again, we were working thru her problems then June 04, 2006 came.  This is when Dani’s seizures were so severe that she was intubated to get them to stop.  This is when we found out Dani’s brain stopped growing.  This is when I lost all faith because if God was real, he wouldn’t make Dani suffer so much.  He wouldn’t bring her back just to lie on her back and do nothing the rest of her life.  She would work so hard and make progress only to get sick, have an extended hospital stay and have to start all over again.  Over and over again we watched Dani suffer.  Not only that we battled insurance companies, medical supply companies, nursing companies and her medical family as well.  Nothing was easy when it came to Dani.  Just like Dani, everything for her care was a fight and struggle, a constant life draining experience.  May 2007, Dani entered into Hospice to live out her last days in peace.  Even now, when Dani was at her worse, I felt God was not there because if he was, he would take her quickly.  He wouldn’t make us plan out her funeral, he wouldn’t make us make the tough decisions that we were faced. 

 But as I read the book, some things really hit home.  On page 54, “Moms, on the other hand, may not have medical degrees or teaching certificates.  They may not appear wise according to the world’s standards, but they have an uncanny awareness of what their children need.  In 1 Corinthians 1:27 we read, “God chose the foolish things of the world to shame the wise…the weak things of the world to shame the strong.”  This passage reminds us to value the instinct over intellect, making a lifesaving judgment call without opening a textbook, for instance, and saying or doing exactly what needs to be said or done, void of degrees or certificates.”  On page 63, “…helped me to realize that God has displayed His perfection through Lucas time and time again, not through his disabilities but in how people have responded to his disabilities.  You see, God’s purpose for Lucas isn’t for Lucas.  It’s for us.  God’s purpose for you and me isn’t for you and me.  It’s for others.  God’s purpose for His children is to reveal His glory through the impact we have on others.”

I always felt Dani is here to teach us something.  And she is teaching us every day whether we listen to her or not.  And it is through Dani we learn faith.  Instead of looking at God in a positive way, I always viewed it negatively because of Dani’s suffering.  But Dani’s suffering helps everyone around her grow.  This little girl has touch so many lives that I didn’t think it were possible to achieve.    It is through Dani we become better people.

Thank you Dani for making me a stronger, better person.  Thank you for letting me be a part of your life.  I love you Dani!

Clear eyes…

Dani had another good week.  She is WAKING up more.  Her eyes are getting CLEARER.  Skeptics say, “you haven’t been going down on the Phenobarbital to make this much of a difference”.  But tell me then, why is she waking up?  Why is she starting to feel more, why is she starting to vocalize more, why?  I say, they can think what they want, I know it is helping my Dani.

Her Make-A-Wish meeting went well.  Dani has two wishes, the first one is a family trip to Walt Disney World.  It would be wonderful to get away and spend some family time together.  Her other wish would be a hot tub. 

Today, Brianna had her First Penance.  Grandma Donna stayed with Dani. 

Dani’s clear eyes

 

 Dani’s Make-A-Wish shirt

Of course, Rex thought it was picture time for him

Dani’s Swallow Study

Today was the day for Dani’s swallow study.  It was an early appointment, she was there by 8:15 AM.  This was probably a shock for Dani because she usually sleeps in until 10 or 11 AM.  And that is very cold didn’t help matters any.  DANI PASSED.  She is able to get applesauce textures, nothing thicker at the moment.   Dani has to work up to that.  Dani does have risk for aspiration, because she likes to hold the food in her mouth for awhile before she swallows, but she will swallow.  They said there was “penetration” once but Dani overcame it.  What this meant was that Dani’s food was going to her vocal cords, but her swallow was STRONG enough to pull it back to the right place.  They said the teaspoon amount we were giving her is the right amount for now, until she completes another study in a few months.  It is a start!  We are going to try to schedule a later time for next time so Dani is more awake.  I made my flurry of calls after Dani’s appointment and Auntie Suzie has homemade applesauce just for Dani!  Good job Dani, you’re an awesome trooper!  On a side note, they were impressed with Dani’s diet and how she gets puree food and how awesome she is doing on it.  She couldn’t see why some of her medical family would condone it since it clearly helps her out!  I couldn’t stop smiling that Dani passed her test.

Later tonight we meet with Make A Wish.  Kaylee and Beans were a little disappointed that they won’t be here since they have CCD because they wanted to put their two cents in on what Dani “wants”.    What goofs…

Dani made up for yesterday.  She slept pretty much all day.  But it was good to see that she didn’t shut down when we were in Brookings.  We watched Mr. Bean’s Holiday and Stardust with the 5 girlies.  Abby ditched us and was a mini tornado thru the playroom and the girls’ room, well a HUGE tornado to be more precise.   But the girls got everything back into place before bed.  During bath time, Rex thought he needed to jump in the tub with Abby and Brianna.  What a retard because he hates it when I give him a bath.  It is quiet again in the German house since everyone is asleep, well except Rex.  Tomorrow, I will bring Grace and Abby home on my way to Watertown for work.  Lately, I have been spending 1-2 days a week out of town.  But I will be back for Dani’s big appointment on Wednesday.  She is scheduled for her SWALLOW STUDY!  Grandma Donna is coming down next weekend.  Brianna has her First Penance on Saturday.  In late April, Brianna will have her First Communion.  We are just treading water because last year, Dani’s April and May were the worst for her.  This is when she entered into Hospice due to taking 6 weeks to get over the flu.  Pretty soon summer will be here.  Uncle Chris ships out to Korea in June.  In July, DANI TURNS THREE.  We are planning a big party for Dani again this year.  So mark your calendar, July 5^th, 2008 is the day for celebration.   I think our family could use the fun time to relax and hang out with friends and family.   Besides, Dani deserves a day for her with everything she has accomplished since January 23^rd, 2006.

Dani had an awesome week.  She had two chiropractor appointments to make up for missing one last week.  Dan and I actually got time to spend with each other on Valentine’s Day.  We went out to eat and got our taxes done.  On Friday, Dani went down again on her Phenobarbital.  She is doing great, no increased seizures.

Instead of trail of tears, we had a trail of crap through our house.  Dani pooped real good and I didn’t notice when I got her out of bed.  It wasn’t until I looked at my pants and I saw poop everywhere.  And it would be the time I didn’t put her on the mat, so she had it all over the carpet.  Rex took it upon himself to try to clean up the poop trail before we caught him and he went into his kennel.  I got another shower and Dani got a bath!

Today, I packed the gals up and we headed for Brookings for the day.  I had a day of crafts planned, but it has been a while since the kids got together they ended up playing.  Dani did wonderful at Suzie and Kevin’s.  She didn’t get bent out of shape for getting her out of her routine.  Suzie and I even went shopping and left Kaylee and Kevin in charge of Dani.  Dani did her famous blow out diaper, but it was waiting for me when we got back.  Luckily, this time she didn’t’ get it everywhere.

I brought Grace and Abby home with me.  The ride home started out with a bunch of giggles but once Abby fell asleep, things got quieter. 

Here are some pictures of Dani and her leg warmer, Rex…

 

Dani aka Nanny McPhee…

Dani acting tired…

Dani’s new bed…the first time she slept in it, she hummed with delight!

Another letter to Dani..

Dear Dani,

Wow!  I am speechless to the gains you are making.  I am in awe of your determination.  I am privileged to be a small part of helping you “show those doctors”!  My heart swells with pride as I see you improve and do new things that you previously could not do.  

I cannot wait until we go back to Philadelphia in March.  I cannot wait to show off your achievements and gains.  I cannot wait for them to see you again.  You are such a hard worker and your will to survive is so motivating for everyone to witness.  Keep it up girly!

I just completed your booklet to send to Philadelphia.  I am honored to be able to fill in more blanks that the very first book we sent in.  But of course, this is probably where I should tell you once again there is no “scientific logic” to why you are getting better.  Or better yet that you “are the exception to the rule”.  I realize that every brain injury is different and every one reacts differently that goes thru the trauma of a brain injury.  That is what makes us unique.  Think about it, every fingerprint is different, that is what identifies us who we are.  This is a universal concept.  So why is a brain injury any different, each one is also unique?  Why don’t we have a universal concept for treating brain injuries?

I remember asking after you suffered your brain injury for books to read, conferences to go but were discouraged to do this by your medical family.  They stated “every brain injury is different” so we just need to “wait and see”.  But yet we were told that after 2 years we will know how Dani will be like for the rest of her life.  If she hasn’t gained her skills back, she never will.  Well, I say where is the book with that information, why were we not provided anything to prepare ourselves.  Instead, it was me spending countless hours researching on the Internet.  I have purchased over 30 different books to find ways to help you.  I have books on seizures, brain injuries, cerebral palsy, stem cell research, medications, vision impairments, and my favorite “What to Do about Your Brain Injured Child.”   You see, there IS information out there, but it was never offered.  I have requested all of your medical records from every hospital stay, every procedure that was done to you and every doctor visit, which by the way girly, you have way too many doctors.  I researched on Google.com to understand the big medical terminology labels they gave you.  I stumbled across other children’s websites that have similar labels.  I researched and researched for ways to help you because we know you are still in there, you are my daughter and I will never turn my back on you.

Every time you started something new, we were told that was “typical” for a brain injury.  And yet we are never told to watch out for these things, instead you scare us with these “typical” things.  Your seizures, your neurological storms, your neurogenic bladder, the bleeds on your brain, or the way your brain stopped growing.  Instead of preparing us or having us watch out for these things, we had to learn on our own when you did these things.

I would like to touch on the subject of it being 2 years since your brain injury.  You aren’t supposed to gain any more skills back, you are just supposed to lie there staring at the ceiling.  But wait, you are sucking again.  You are able to eat a teaspoon of babyfood.  You are moving your eyes to look at your sisters.  You have been caught moving your fingers, flicking your wrist, moving your legs and bringing your arms up.  You play your possum game and you have fake snores to get out of work.  How is this possible?  Could it be maybe some of your medical family really doesn’t know what they are talking about?  Could it be they may need to spend some time researching as I did?  Could it be that they are wrong to give you a 2 year limit?

What I don’t understand is the old ways they used to treat you.  For example, the medications, intense therapy programs, and your diet that were forced upon you.  In this new age of technology and scientific advancement, you were held back to the “standard” way of thinking.  You were not introduced to the new way of treating a brain injury like what the Institutes is doing in Philadelphia.  Dan and I had to fight your medical family to achieve this for you.  We constantly had to defend our reasoning for going out there.  But no more…your medical family will have to start to accept what we are doing or they are NOT going to be a part of your life.

We are told there aren’t any recent papers written on the Institutes or it is mostly foreign papers.  What I would like to challenge your past and present medical family is to write a paper on you and what she is accomplishing by using the Institutes program.  I have a ton of information and I know the Institutes will provide you with anything you need as well.  I challenge your medical family to open their minds to that this actually works and that the old ways should be replaced.

Dani your seizures went from 5-6 an HOUR to at most 3-4 a DAY.  You successfully got off Depakote and currently are working on getting off Phenobarbital.  Good job girly girl.  You will tackle your Valium, Keppra and Neurotin in the future.  You are THRIVING, you are gaining weight and my how you are growing on your new diet.  You are 36 inches tall, you no longer fit on the baby scale.  You no longer choke on your drool, in fact I can see you getting off your Robinul because you can control your salvia thanks to your new diet.  You can cough again.  It isn’t your weak little one, you can actually cough up the junk that you used to like to keep in your lungs.  We have seen more smiles from you, we are waiting patiently for your giggle to come back.  You are becoming quite vocal again, your hums when you are happy, your growls when you are not so happy.  You can become quite the crabby patty at times letting us know to “back off”.  And when we don’t, you do your classic of going to sleep to get out of work!  Your newest accomplishment, you are getting teeth.  No longer the swollen gums, your teeth are coming down.  You look kinda like Nanny McPhee with your one big tooth coming down.  But we can see your other ready to poke thru as well.  You have your bottom two teeth, but you keep these covered with your tongue.  A couple of your back molars are down as well.  It is like your brain is telling your body, you need your teeth now so you can eat, so down they come.   The fact that you can eat again is wonderful.  When I showed your Daddy you can eat, I could see the pride in his eyes.  Congratulations Dani!

Dani, keep showing them, keep amazing us, keep being you.  You are a miracle that I treasure every day.  I can’t wait to witness your next accomplishments…                                                           

                                                           Mommy

Dani is doing just fine, I have been traveling for work and haven’t had a chance to update her website.  She is becoming more “vocal” with going down on the Phenobarbital.  She can be quite the crabby patty at times.  We are hearing more hums, grunts and groans from her.  Today she should go down on the Phenobarb again, but we are going to give her another week to adjust.  Today, Dani got her port accessed.

It was Kaylee that had us in the doctor’s office today.  (Dani kicked up the fake snores just in case they were going to pick on her)  Kaylee has been getting a lot of bloody noses lately.  We first thought it was because it was dry in the house, but we have been running a humidifier and it really isn’t helping her out.  There will be no rhyme or reason to why she is getting them and sometimes they will last ½ hour.  She will get them at school as well.  So, off to the doctor’s we go…  Many questions were asked regarding family history…FOR FAMILY MEMBERS READING THIS, PLEASE LET US KNOW ASAP IF THERE ARE ANY BLOOD DISORDERS IN THE FAMILY.  We are told to watch Kaylee and see if the bloody noses start up again or if she gets a cut and it takes a long time to get it to stop bleeding to bring her back in.  Hopefully, it is nothing but it being dry in the house because I don’t think Dan and I could handle it if another one of our girls was getting sick.  Dani alone is enough to send us over the bridge…

Beans was quite the character at the doctor’s office.  When the doctor looked up Kaylee’s nose she bursted out laughing because it looked funny.  Then when he asked Kaylee if she gets a lot of boogers, she roared so loud that her face was red.  Then the doctor asked if Kaylee has noticed any blood in her poop or pee.  I thought Beans was going to pee her pants from laughing so hard.  The doctor then turned to Beans and asked if by any chance she gets in trouble a lot.  That got the rest of us laughing.  We told Beans next time she has to stay home with Rex because she is too distracting.  I don’t see why she didn’t think that was funny…

Dani the Possum…

Ok, when Dani would play her possum tricks on her medical family, I thought it was funny.  This is when she is awake but fakes sleeping so they leave her alone.  She even pulled this trick on the girls.  But now the stinker is starting to pull this trick on me.  It suddenly isn’t so funny.  This morning while I was feeding her, I was trying to get some of her program done.  I stress the word t-r-y-i-n-g!  When she could tell I was near her, the eyes would slam shut and the snoring would start.  She could even put Grandpa Durand to shame with the loudness of her snores!  So, I would back off and not do her program.  I would peek in her room and I would see her eyes OPEN.  So again, I made her work only for her to “fall back asleep” on me.  It only took me a couple times before I caught on to her little game.  I definitely know it is a game because she tried to play possum in the TUB!  Ha Ha Dani, nice one.  She played her little game until she accidentally fell asleep for real!  What a stinker.  When she finally got up 2 hours later, I brought her out to the living room.  She got her nails clipped, mickey changed for the month, mouth cleaned out and lips cleaned off.  When she figured out that I was not playing her game of possum, she pulled the crabby card on me.  What a crabby girl she became!  She became such a grouch that I put her back to bed.  The joke was one me because that is exactly what she wanted to do.  For the doctor that told us, “the lights are on but nobody is home”, Dani definitely is home because she wouldn’t be pulling tricks on us if she wasn’t…