Dani’s on “cruise control”

Dani has had a busy week and it is only Tuesday!  Monday, she had an appointment with her chiropractor.  It has been over a month since she has been there.  Dr. Marsh was expecting a bad appointment, but Dani was the perfect patient.  (For once)  Or maybe that it was an evening appointment that she did so good?

Today, Dani met a “new” doctor.  He is new to Dani, his specialty is not.  Dani met Dr. Falcao, a neurologist.   I hate to admit, but it has been over a year since she saw her last neurologist.  Wow, time flies.  I have to admit that I was impressed that this doctor was not a pill pusher.  After getting Dani’s history and listening that 3 years ago, her seizures lasted anywhere from 20 to 30 minutes and she was on SIX different seizure medications!  Today, she down to ONE seizure medication and her seizures last 15 to 30 SECONDS!  It’s not perfect, but let’s face it, when talking seizures and Dani, she will never be seizure free.  We can live with the 30 second seizures.  Dani has been relatively stable (knock on wood) and has not had an unplanned hospital stay in over 2 years.  He then said that Dani is on “cruise control” and that he didn’t want to make any changes!  (He would have had to really make a good case for us to agree to any changes because Dani has been so good lately.)  Why upset the applecart?    He did say he wanted to get to know Dani before he could make any recommendations, so at this time, we will be seeing him every 6 months.

Dani also got her port a cath flushed.   When she has her Baclofen Pump surgery, we will be removing this device. It isn’t working and it served its purpose.  This time around it did take 2 needle sticks.

Leaving the doctor’s office is when I got a tad cranky.  As usual when we have Dani with us, we park in the handicap parking.  We normally park in the van access because there is more room to transport the lug from her car seat to her kid kart.  However, there was a car parked in that spot.  Last I checked that was NOT a parking spot.  To make matter worse, there wasn’t a handicap sticker on this car or the car next to it.  So, I have to squeeze Dani in sideways to get her in the van.  It’s hot, I am sweaty because she isn’t exactly light as a feather, so I start fuming.  I get her settled in, and then I hunt down the car nazi.  You know what parking lot I am talking about.  That if you park in it and head to the main hospital, he comes out and makes you move your car.  Anyway, he was the one to park the cars ILLEGALLY in these spots. See, he was “swamped” and was doing “valet” and had no where to put the cars.  I tell him I had one hellava time putting my handicap daughter in her car seat  because of this.   He snaps at me and said HE WILL MOVE THE CAR IN FIVE MINUTES AND HE IS BUSY.  I never usually do this, but I took his name and called back later to complain.  That was ridiculous to utilize handicap parking and actually spots that aren’t even parking spots!

So, ok, I am still fuming, but we had one more stop to make before we could head home.  We had to pick up Dani’s medical supplies.  I had called in her order the day before to be ready today.   Her stuff is normally in the entry way.  I am looking and I don’t see a DG tag anywhere.  So, I have to go inside to see what is going on.  Of course there was a LINE in there and I had to wait.  Nice, when I was already fuming.  When it is finally my turn, I said I ordered supplies for Dani German but I didn’t see them.  He starts clicking away on the computer and informs me there aren’t any supplies because I didn’t order any!  Ah, excuse me?  Then beings I couldn’t tell him who exactly I talked to I was then informed that since I left a message on the machine with the order that there isn’t a guarantee time it will be done.  Ok, at this point, he is just in the wrong place at the wrong time.  But to stay positive, he at least now acknowledges I placed her order.  I try to stay calm and tell him to look again.  He comes back and tell me that there are a TON of notes on her account and he will have to go through them.  I just wanted her supplies so she could go home.  Thank goodness the nurse was with Dani in the van because I had a 25 MINUTE wait to get her supplies.  It wasn’t like I could just leave because she was down to her last feeding bag.  By this time, Dani has had it..she was tolerant enough to allow us to take her to 2 different appointments and stop for supplies.  She starts crying out.  Tell you what, that set me off all over again to hear her cry out like that.

Let’s just say when we went to school registration, I wasn’t a happy camper…

Dani + Traveling = Not Fun

We survived our trip to the Cities!  Thank you Grandma Donna for coming with us.  We left on Sunday and hit some construction on the way there.  We just chilled at the hotel to let Dani recover from the ride.  On Monday, we hit Albertville to try to complete our back to school shopping.  Kaylee and Brianna really weren’t into shopping because they were miffed we didn’t go to the Mall of America so they could ride rides!  So, I focused on Dani and found her some clothes.  But soon, Dani was beginning to let us know that she really didn’t care for the shopping either.  Or maybe it could have been the fact that someone turned the heater on in the back of the van and she was hot?  Either way, we gave up and headed back to the hotel so Dani could get her nap in.  Grandma Donna was nice enough to “offer” to stay behind at the hotel while Dani napped and I brought the girls to ride their rides.  After 5 hours of watching them, I was ready to call it good.  Oh well, least they had fun.

Today, Dani had her appointment with her neurosurgeon.  Little Missy got the go ahead (again) for the Baclofen Pump surgery.  Selfishly, I wanted to wait until January to complete this, but he refused to do a surgery on her in midst of the cold and flu season because of her being “frail”.  (I wanted to wait until I had more vacation time and hopefully Dan would have some vacation built up by then so he could go with.)  He said we had basically two choices, September or Spring.  I think it amazes me when he refers to Dani’s clonis (tremors) and tone as severe because by time he sees her, she has been using Valium.  We give her the valium to keep her calm and to be able to tolerate the ride to the Cities.  Could you imagine how “severe” Dani’s clonis would be if he saw her without the valium?  But I will say, it has been getting worse the past few weeks.   The plan for the next couple of months is to pack a few more pounds on her and then surgery this fall.  It will be a 5 to 7 day hospital stay with at least one day in the PICU because of Dani’s past reputation.  The whole idea is to improve her quality of life and to take away the majority of her muscle spasms, tremors, and clonis.  It will not take away all of it, but the majority.  And after sleeping in the same bed as her for 2 nights, this poor girl has many of these “episodes” that wake her up many time during the night.  I am surprised if she gets any sleep.

The girls decided to go back to Grandma Donna’s for the rest of the week.  Nice and quiet in our house at the moment!  I have the dog sitting on my feet and the cat is sitting on the desk staring at my fingers as I type.  She is waiting to pounce on my fingers.  Little does she know, I won’t fall for that trick again!

**website changing**

To access Dani’s journal and website, please use the following website:

https://fortheloveofdani.wordpress.com/

Within 48 hours the www.fortheloveofdani.com will no longer be active.

Better late, than never…

Wow, it’s been over 2 months since my last posting.  Where has the summer gone?

Brianna played her 1^st year of softball.  She had fun and was actually quite good even though she throws like a girl!  Haha, that was our joke, she would get quite offended when I would tell her that, BECAUSE SHE IS A GIRL.  By the end of the season she got better at taming down her wild girl throws.  She did inform me that she would like to play again next year.  Dani was nice enough to grace everyone with her presence at a few of the games.  Only once did she actually make it through the whole 5 innings!  Miss Kaylee was cheering on the sidelines, well, she was there in body form.  She usually was reduced to pay attention to the game once her cell phone died!  Oh the joys of sisters!

Kaylee, on the other hand, didn’t want to take softball.  Why?  Well, duh, that involves running!  We quite aren’t up to speed on that one yet. 

In less than a month, school starts up again for the girls.  Pretty sure Dani and the nurse can’t wait either!  Then they get the nice, quiet house back again.  Kaylee will be a 7^th Grader and Brianna will be a 5^th Grader.  Where does time go?  Dan and I have decided not to send Dani to Kindergarten.  We feel that it would be more stressful and hinder her quality of life by forcing her into a crazy, hectic kindergarten routine.  She would be exposed to more germs and sickness, that I don’t think she has the strength to fight.  Let’s face it, she gets out of her “routine” when relatives come to visit, let alone, taking her out of the comfort of her own home and putting her in a room full of 5 year olds!

Speaking of 5 year olds.  Dani celebrated her 5^th birthday on July 1^st!  I can’t believe she is 5 already!  We celebrated her birthday at the house with Grandma Donna and the Heier  Family.  Tony and Grandpa Durand spent the 4^th in El Salvador!  They brought Joana back them!  It was over a year that she was in El Salvador.  Hopefully, soon, Maria and Jasmin will get to come back.

Dani had a routine visit with 2 specialists.  The first one was with Dr. Doubledee, her GI dr.  She only gained ½ pound in 6 months, so he increased her feedings.  It was an adjustment for her, but she seems to be tolerating her feeding now.  The second appointment was with Dr. Veloria, her pulmonologist dr.  He did suggest Robinul for her increased secretions, but we declined this medication.  Dani has been on this in the past, that gave her kidney problems.  I am sorry, I would rather deal with a little extra drool than have to cath my daughter whenever she had to pee!

It has been a tough summer for us.  The company that Dan was working for, closed its doors.  He was out of work for little over a month.  Thankfully, he has found a new job with not that much of  a pay decrease.  At least it is something!  The way I look at it, you just need to roll with the punches, no sense getting all worked up.

On Sunday, we are having a girls weekend and heading to the Cities.   Dani has an appointment at Gillette Children’s with Dr Petronio, her neurosurgeon on Tuesday. (Sadie, we would love to see you if you will be around)  The girls, Grandma Donna and I will be leaving on Sunday for a “mini” vacation.  (Traveling with Dani is NOT a vacation)  We are going to complete our school shopping and go to Nickelodeon Universe.   

Precocious puberty

Just when we thought that Dani was going to finally behave, she pulled the rug out from under us once again.  I tell you what, that girl, can make a person worry.  I am going to attribute all my gray hair to her, and yes I have gray hair.  Just ask my sister, she yanked a long one out on Sunday for me.  I would think that 10 more took its place since then…

Back to Dani…

I think you might remember me posting on her website, that we notice such body odor for her about 9 months or so ago.  We were told to watch for other signs of puberty, yes I said puberty.  My baby isn’t even 5 years old yet and we have to watch for puberty.  Time past and Dan and I were chalking it up to Dani just being smelly.  That was until about 2 weeks ago. 

We all went back to Sisseton for my brother’s shipping out party.  He is doing a tour in Afghanistan.  I had changed Dani’s diaper and my heart stopped.  Why?  Because we just got another sign of Dani hitting puberty.  How are you supposed to act when your parents house is full of relatives?  Like  everything else, I blinked back my pain and went back out with a smile on my face.  All the time, I was worried on what this actually meant for Dani.  Why?  Why does this have to happen to her?

Last Thursday, Dani met with an Endocrinologist.  Yet another specialist to add to ever growing medical family.  He was a very nice doctor that actually had bedside manners.  He even cracked a few jokes.

He talked about puberty and the stages are body odor (mentally, I said check), breast tissue (ah, negative ghost rider), pubic hair (damn, check).  But it is when kids under the age 8 hit some of these milestones, causes concern for everyone.  He really didn’t want to attribute her brain damage to causing this, even though we already have received conflicting information on this.  His thoughts were:

1.  It is just one of those things that happen that can’t be explained.  It just happened.  Just like her arthrogryposis. (I am thinking at this point, we have a winner here because this most explains Dani in a nutshell)
2. Hereditary.  He asked if I heard of this in the family.  I told him he was very funny for asking this because no family member came forward with anything when Dani was born with arthrogryposis much less early puberty.  So, I am going to say no.
3. This next one let the wind from my sails.  On rare cases, it could be a tumor.  (Again, I thought with Dani’s luck, this is going to be the diagnosis!)

At this point Dani underwent a bone age of her right hand.  That just entails an x-ray of her hand.  Today we completed blood work.  We won’t know for about 2 weeks what the next step is for Dani.

We discussed “stopping” this for Dani.  He explained the “ethical” debates out there and really didn’t let me know what side of the debate he falls on.  Also, I have yet to do my research if we put her on hormone therapy, what kind of side effects there are.  I am kinda still in shock because I can’t wrap my head around this situation.  Maybe it’s the fact that she is going through something her older sister is just starting.

This just isn’t getting any easier…

http://www.mayoclinic.com/health/precocious-puberty/DS00883

Hips good…knees not so much…

We had a nice, quiet weekend.  Tony took Kaylee and Brianna back to Grandma Donna’s for the weekend.  The dog pouted in his kennel and the cat crawled the walls, I guess the four legged critters didn’t enjoy the peace and quiet as much as Dan, Dani and I did! 

Dani had an appointment with Dr Haft today.  The plan was to see if her hips are still in place and we aren’t causing her more pain by putting her into a sitting position.  Luckily, there wasn’t much change from last year. But as he was stretching her legs, her knee popped.  Dan just thought it was her hips because we have heard that noise before.  So, after more x-rays…(Dan forgot to pack her kid kart so he had to lug her back and forth)…it showed that Dani’s knee cap is lower than the other and is dislocated.  Kids like Dani, he feels it would be invasive to put her thru surgery because she doesn’t walk.  My question is, does it cause her pain?  I didn’t go to this appointment because I just thought it was a “routine” appointment…

You’ll Never Know Until You Try…

Friday was a busy day for appointments in the German house.  We started the day with Dani’s renewal of her Family Support.  This is the program that pays for Dani’s diapers and put in our wood flooring!  An awesome program to be on when you have an child like Dani that challenges your household budget.  Meeting with Family Support always leaves me with renewed hoped for the girls.  The reason I say that is because our coordinator has a sister with cerebral palsy and basically got in her line of work to help other families.  She knows how it is to have a sibling take up so much time and it made a positive impact on her life.  I hope that the same goes for both Kaylee and Brianna.  It would be devastating to us if Dani has a negative impact on those big sisters of hers.

The second appointment was with the dentist.  Whew, not for me, but for all 3 girls.  I am so impressed with The Children’s Dental because Dani successfully had her first cleaning!  The hygienist was not scared (or did darn good on not showing it) of Dani and cleaned her teeth!  She even got x-rays done!  When the dentist talked to me about Dani losing her baby teeth, it hit me hard.  Holy crap, I forget the normal stuff with Dani that it didn’t even register with me that she will start losing her baby teeth.  Or maybe it was because Dani’s teeth just recently broke thru the gum line?  He said there was a lot of trauma done to her teeth (hmm, too many traumatic intubations) that she will lose her top teeth before her bottom teeth.  Brianna had another cavity free appointment!  We are starting to save our pennies because braces are in her future.  Kaylee, as well had a cavity free appointment!  Now, we are not as fortunate in her case to start saving, because in 6 to 12 months she will be fitted for braces.  Yikes, what a price tag!  The dentist saw my face when he was saying both girls need braces and assured me they will get Kaylee out of braces before putting Brianna in them.  Whew, I was counting dollar signs!!!

Our final appointment was with the Eye Doctors.  Dani had to go along even though she wasn’t being seen.  Dan and my eye both had improvement.  I thought your eyes were supposed to get worse with age? Kaylee’s eyes took a dramatic turn for the worse and was fitted for a new pair.  And Brianna has joined the “cool” group and was fitted for her first pair of goggles.  She has a different view about it, says she is going to look like a “nerd”.  She told the optometrist this and as I was wearing my glasses…oh Beans…

Saturday was a fun filled day.  The Heiers came down and we had a “girl” day and went to watch Alice in Wonderland.  (Well, Tony came along too).  The kids had fun.  It was funny to sit by Abby because whenever a weird looking character would come on, she would say, “there is Tony”.  And when Tweedee and Tweedledumb made their appearance, “there is Tony and Dustin.”

Happy Birthday Abby!

We went to Brookings on Saturday to celebrate Abby’s 5^th birthday party!  We really haven’t been anywhere since Christmas.  It was fun.  Dani did great!

Dani went to see Dr Johnson today.  She is getting tighter in her hips and legs.  Since Dani is no longer at her weight threshold for the Baclofen Pump surgery, we elected to up her medication.  We don’t see the point of putting her under again for the phenol and botox shots seeing that only lasted 3 months.  She goes in on the 22^nd to see Dr Haft to make sure her hips are still in place.  Hopefully they are, otherwise it could be causing her more pain.  Dani also got fitted for a bigger chair for her therapies.  She is getting so tall!

Other than the weekly chiropractor appointments and monthly port access, Dani has been pretty “quiet”.  Thank Goodness!  It has been a good stretch for Dani and hopefully, I didn’t just jinx it…

Happy Birthday Grandpa Durand!

Another week down for the German household.  Dani missed her weekly chiropractor appointment because of the weather.  On Wednesday, she had an appointment with her GI doctor.  Surprisingly, she is down in weight.  I say surprisingly because she still makes my biceps shake when I have to carry her.  She is down over 4 pounds!  Now, she is no longer at the threshold to get the Baclofen pump surgery.  Dr. Doubledee has upped her feeding in order make up for her loss.  This has proven to be tricky because within the last couple of weeks, Dani has started to throw up feedings again.  She did this 2 years ago and threw up for over a year.  Towards the end it was every feeding she would throw up.  She lost a lot of weight during this time.  Many, many expensive tests were ran to try to figure out why she was throwing up, everything always came back normal.  Then one day, she stopped throwing up.  Just like that.  This seems a lot like last time.  She will even wake up crying at about 3 AM, we vent her feeding tube and so many burps come out.  She has been on this formula for close to 2 years, but it is like her body is rejecting it.  Just like the last formula.  So, we will see how Dani behaves the next couple of weeks…

Kaylee and Brianna are doing great in school.  Kaylee made the B Honor roll and Beans made the A Honor roll.  They both go to weekly therapy sessions to help deal with everything that goes on with Dani.  My greatest fear is that they will one day resent Dani because she requires so much of our attention.

January 23, 2010

Dear Dani ~

It is hard to believe today is your 4 year anniversary for your brain injury.  Due to the severity of your brain injury, you were given at most 3 months to live.  You sure showed them that they were wrong!  4 years, it has been a wild roller coaster ride, many sharp turns, ups and downs, ok, a lot of downs, but for the last two years, you have been on a “stable” coaster.  Simply cruising along, living day by day.

You came into this world with a “special ability” called Arthrogryposis.  That just meant you had contractures of the limbs.  But mentally, you were fine.  You started hitting your milestones and started thriving and moving.  You were achieving so much, that some days I really wonder how far you would have got in life.  Would have you walked?  Would have you talked?  Would you still have that same deep laugh?  For some reason, I can picture you and Abby gaining up on the Tank (Jasmin) or running away from her.  But instead, both Abby and Jasmin are pretty protective of you.  They watch with weary eyes as we give you your meds or help you during a seizure.  They don’t want anyone to hurt you.

Events of 4 years ago, still haunt me and I wish I would have did a lot of things differently for you.  At this time 4 years ago, we were all gathered around your bed.  You had tubes and wires everywhere.  It is really amazing what they can do in the medical field. (To help fix their mistakes that they did to you).  You keep on going, you keep on improving, you are my hero.  To be honest, if we switched spots, I probably would have given up long ago, but not you.  You amaze me every day.

We have met some pretty amazing people in your medical family and some not so amazing.  We have met so many different specialists that I didn’t know even existed.  You have a pediatrician, chiropractor, pharmacist, neurologist, neurosurgeon, orthopedic surgeon, pediatric surgeon, cardiologist, dentist, gastroenterologist, genetics, urologist, pulmonologist, physiatrist, ophthalmologist, sheez, is that it?  I am sure I am missing some specialty out.  In addition, you have a physical and occupational therapist.  In the past, you had a speech and vision therapist.  I can’t forget the wide array of nurses that come into the house to take care of you while Dad and I are at work.  We get to also deal with Medical Supply places, nursing companies, insurance companies and yes, collection agencies.  Ha, if the insurance companies would get their poop in a group, collection agencies would never fit in the equation at all.

By this stage in the game, if we need to add to your medical family, we can peg if that medical provider is good, by how they treat you.  Are you like me and think it’s rude for a doctor to never talk to you but about you during an exam?  But the good ones actually view you as a person.  And as for some of the nurses that we had come into our home, I am sorry for that.  Some of them take advantage of you because you can’t speak up and tell us what they are doing wrong.  They use that to their advantage.  We have had a wide array of nurses, the TV junky, the drill sergeant, or the know it all nurse.  Ah, that last one really pisses me off at times.  You see, just because they have a nursing degree, automatically they know you better than your dad or I.  Can you believe that?

Even though it is wild roller coaster ride, I am honored that you have let me be a part of your life.

I love you, Dani.

Love,

Mom