Thoughts on my hero, my inspiration…

I would like to share with you all my thoughts of my hero.  That is what Dani is, my hero.  When I looked up the meaning of hero on Google, I found that it refers to characters that, in the face of danger and adversity or from a position of weakness, display courage  and the will for self-sacrifice, that is, heroism, for some greater good,  originally of marital courage or excellence but extended to more general moral excellence.  Dani displayed courage many times.  Dani may not have won battles on a large scale, but her battles she won were a great accomplishment for us.  Every inch she would shine.  Many times it was one step forward, three steps back.  Dani’s spirit and will to survive astonishes me because she was faced with so many setbacks, so many twists of fate, and to go on living so fiercely.    

My nightmare that still haunts me today was that morning in the ER where Dani’s fate was met.  We watched many nurses and doctors work to keep Dani alive.  Three times we witnessed her heart stopping.  The first time for one minute, the second for another minute, but the third time, Dani was showing her stubbornness, it was eight minutes before she came back to us.  Even then we she was at her weakest, she was making those doctors work.    She was showing them, to keep going, keep working even with hope looks lost. 

Three times we were told Dani wouldn’t make it.  Three times, she proved those doctors wrong.  I believe it was the third time, we were told, kids with the type of brain injury Dani has, normally don’t live 3 months past their injury.  I thought to myself, you go girl, because it was already 23 months past her injury.  Dani truly is on Dani time.   

It brings a smile to my face when a health professional refers to “Dani time.”  You see because Dani does nothing by the book, she threw the manual out and made her own.  She always seems to do the opposite or became one of the rare cases.   It is both heartwarming and heart wrenching to watch Dani do this when she gets sick.  It is heartwarming because I like her stubbornness, her brass, her ability to get the attention of all.  It is heart wrenching because Dani at her young age in years ahead of most of the doctors she encounters.  She challenges them, she at times, is inferior to their “scientific logic” and at times suffers from it.  So quickly they throw medication at Dani, but no one has tried to accept Dani for who she is and just let her be what she is.   

Dani never uttered one word, but she has the attention of many.  I can’t believe how many people will access Dani’s website and follow her religiously.  Many times I would get a call or an email to see what’s up if too many days went by without me updating her website.  I had a few people come up to me and say, “you know when I have a bad day, when I think life isn’t fair, I access Dani’s site and watch her movies, especially, the PICU at SVH and Dani’s RSV movies.  After watching them, my life really doesn’t seem that bad.”  Honestly, I do the same.   I have had many ask when I will write a book about Dani.  To this, I don’t know, deep inside of me says, “When I have my happy ending, I will.”  But for now, her journal will do. 

When I get that rare chance of telling someone new about Dani and her strength, I am taken back to what is said next.  It usually goes something like, “Dani is not the only one that is strong, and she has some pretty strong parents too.”  Me?  Strong?  I am not sure about Dan, but I don’t see myself as strong.  I think I go into defensive mode every time we are confronted with Dani’s setbacks and illnesses.  I get frustrated at times that we cannot plan anything in the family, we have been in a holding pattern since January 23^rd, 2006.  We had to pull Kaylee and Brianna out of Girl Scouts because we didn’t have the energy to take them anymore.  We have to limit people coming over because of what germs may be introduced to Dani and she can’t handle change very well.  Then I look at Dani and I feel guilty for all my feelings.  She never asked for the doctors to give her brain damage, she never gets to say how she feels about it, she never complains, so why should I? 

It has almost been two years since we have ridden the “Dani German Roller Coaster” regarding her brain injury.  We have battled doctors, therapists, medications, hospital stays, surgeries, nursing companies, insurances, and medical supply companies.  Every time we get close to unlocking one of Dani’s mysteries, she detours us to another path.  Dani has endured countless procedures to find out what “mystery” we are battling today.  As the medical field always wanted a scientific “why” or reason to her “illness” we failed to listen to Dani.  She may not be able to vocalize her thoughts like us but she is trying to teach us something regarding life.  They are quick to throw labels, medication and surgeries at her because we do everything in our power to make her “normal.”  But what is normal?  Just because she may not act a “typical” child or achieve the “typical” milestones it does not make her any less of a human being.  Why do we always try to fit the square peg in the round hole?  Why do we let society dictate who is “normal” and who is not?  These children like Dani are so very precious; they teach us so much in life that we take for granted.  They teach us to slow down life and appreciate the little things.  They show us how to light up a room with a smile.  They show us that all the “frills” in life are not needed because it is what is on the inside that counts.  But most of all, they show us unconditional love prevails all!  I am thankful that we have Dani in our lives. Every day is a miracle that she lets us share another day with her.  She is my hero, she my inspiration…

Merry Christmas from the Germans!

Dan was the latest victim to the flu in the house.  I packed up Dani and headed back to Sisseton.  I only had to stop twice to suction Dani and she had a couple of seizures.  Dani rested up at Granny’s house and then we went to Great Grandma Aadland’s for supper.  I didn’t attempt church with Dani.  The Meland crew, Folkestad’s, Bruenings were all up to Great Grandma’s when we where there.  Santa Clause even came to visit!  Dani started getting worked up so we headed back to the farm.  The kids all had fun opening gifts.  It was past Dani’s bed time and she had too much excitement that I had to put her on 2 liters of Oxygen.  The little stinker used it until 7AM before I could get her back off it.  She had a rough night with a big seizure every hour.  I packed up the girls and headed back to Tea in the morning.  It took us 3 ½ hours to get home due to the roads.  Dani took a long nap and is easing back into her routine.  T-Rex was overly excited to see the girls home.  They have been up to Grandma Donna’s since Thursday.

Dani had a tough day today.  Big seizures that would drop her oxygen stats to 75.  I had to give her Diastat not once but twice.  Then she pretty much slept the day away.  We snuggled all afternoon because she usually goes into respiratory distress from Diastat.  Dani handled the doses well and it calmed down her seizures.  She is ready for bed and I hope we have a better day tomorrow.

Dani continues to have her good days and bad days.  It is like Russian roulette to if she will have a sleepy day, awake day, or a seizure day.  On her seizure days some are worse than other days.  Some days Dani will pee on her own, others we have to massage her bladder so she will.  We have pretty much halted her program so she can recover from her Strep D infection.  We do get maskings in the brief times she is awake.  It is a killer when the only time you see the bright eye Dani is when she is in the middle of a big seizure.  Dan and I are still wrestling with the decision if Dani is “well” enough to go to Sisseton for Christmas.  I am torn because we don’t know how many Christmas’s we have with Dani so I want her to go, but on the other hand I don’t want the trip to wear her out and cause more problems.    The decisions regarding Dani are getting harder and I honestly don’t know what is best for her anymore.  We have tried many things to help her, we have brought her many places for help, and we have consulted many doctors for their advice, but is it helping Dani…

Strep D

I meant to post this yesterday but got caught up with last minute Christmas shopping.  Dani’s doctor called in regards to her tests.  When they grew out cultures with her urine, it was determined that Dani has Strep D.  I know you are probably are wondering what the heck is Strep D?  I have never heard of it.  Dani had large amounts in her urine.  This is what I found on Strep D:

Group D streptococcus is the sort of streptococcus that normally lives in our GI system (bowels, gall bladder etc) It does not normally cause invasive/aggressive infection but can cause a problem in people (adults and babies) who have had surgery to the bowel/gall bladder, or who have lots of intravenous lines in them etc; as some very poorly or premature babies sometimes do.   In other words, it is not intrinsically dangerous, but can cause a problem it gets into the bloodstream in those who are already poorly – especially it is resistant to some of the commonly – used antibiotics.So we are trying antibiotics to see if we can get it cleared up. 

So, it wasn’t Dani’s seizures making her so sleepy, she was fighting an infection…

Despite Dan’s efforts to keep Beans quarantined when she had the flu, Dani got it.  It started late yesterday afternoon.  The first time she threw up, I was hoping it was a fluke.  But then she did again when she was fed at 8pm.  She had me up by 5:30am with throwing up.  It is like a domino effect for her then she starts to have more seizures and her oxygen stats start dropping.  I put her on oxygen at 5:45am for about 3 hours before I could get her weaned off it.  I fed her over a period of 1 ½ hours and she kept it down!  We gave her bath to help bring down her fever.  Right now she is cuddling with Beans watching a movie.  I am crossing my fingers we can meet her needs at home so she isn’t hospitalized over Christmas. 

Meet T-Rex, chomper of ankles… 

We have a new addition to the family.  It is the four legged slobbery kind.  Kaylee got to pick out which pup, there were two to choose from and Beans got to pick the name out.  T-Rex is a miniature dachshund.  He is very quick to run despite how little he is and latch on to your ankles!  I am impressed because when Dani is on the floor, he just gives her kisses, he does not try to bite her.  He ran up and was licking her face, her eyes got big and she looked over at T-Rex!  I am sure she was wondering what the heck he was!  He isn’t so nice to the girls, they have the playful bite marks to show for it!   Yesterday when he woke up he ran from the kitchen to our bedroom to the living room then the bathroom before he found the girls.  Beans thought it was funny because all she heard was him running! 

 

Mom’s Know…

I was out of town this week for work so I was unable to update, but here goes…Everyday Dani continued to wake up a little more.  By Thursday, she was awake all day, only taking her normal naps!  Dani had an EEG done.  As Dan and I suspected, her seizures were NOT to blame.  Her EEG was the SAME from October.  No increased seizures were to blame for her sleepiness.  However, they had to rerun her urine tests.  Evidently, there was bacteria in there, actually a large amount of bacteria.  We are told to wait until the results come back to see if the bacteria is still there.  As Dani works, it is NOT typical to have this kind of bacteria in urine.  I had ask the doctor to think of the most rare case and run with that because I didn’t feel her seizures were the cause of her sleepiness.  But the pediatrician and neurologist held firm that her seizures were to blame, not an infection.  Dani does the opposite once again!  It is hard that her medical family always goes down the route of the “typical” case because Dani has proven time and time again, she is NOT typical.  Thankfully, we held strong and did not increase or add any new seizure medications. 

Little improvements…

Dani is starting to be awake for longer periods of time.  On Friday, when Kaylee got home from school, Dani’s eyes turned in the direction that Kaylee was talking.  Kaylee even got a couple of smiles from Dani before she went back to sleep.  Grandma Donna and Ally (the dog) came down for the weekend.  On Saturday, Ally came in Dani’s room while I was getting Dani’s medications ready.  Dani was in her bed and she caught Ally’s attention, because Ally had to go investigate Dani.  It must have scared Dani, or it was Ally’s breath, because when Ally sniffed Dani, Dani held her breath causing her oximeter to go off.  Ally hightailed it out of the room at the sound of the machine going off.  A couple times over the weekend, when Grandma Donna would talk to Dani, she would briefly turn her eyes over to look at her.  We have Dani scheduled for an EEG on Thursday to see if it is her seizures making her so tired.  We want to be sure it is before going up on any seizure medications.

Uncle Tony brought over Kaylee’s birthday present on Friday.  Kaylee unwrapped the present and it was a  framed picture of TONY!  Kaylee did not think it was funny and Brianna wanted to make a mustache on the picture!   When the girls were doing their chores, they came across the real present, which made Kaylee much happier. 

Great Grandpa Don and Grandma Ann came to visit Sunday evening.   

Dani will get her first dose of the RSV shot on Wednesday!

Another “wait and see” game

It has been a week since Dani has been playing the role of “Sleeping Beauty.”  She is awake for short periods of time during the day.  We still don’t have a “real” answer to why she is doing this.  It was their best guess, seizures were to be blamed, however no EEG has been ordered or done to confirm this.  Our luck, Dani is doing something rare that the doctors have not considered.  I am at a loss on how to proceed, because I have never been a big fan of “wait and see” when it comes to Dani. 

THANK YOU!!!

I want to say a big THANK YOU to Geri at Avera.  It was by her efforts, Dani got approved for the RSV shot.  Dani was originally denied back in September.  We tried to appeal it, but the doctor would not write a letter for why Dani is a good candidate for the shot.  Luckily, we switched doctors and with Geri in our corner, Dani is scheduled for her first shot next week.  This monthly shot helped Dani get thru last winter without any sickness.   

Dani was awake more in the morning, but by the afternoon very drowsy.  We didn’t have to deal with any 20 minute seizures today.  Dani’s neurologist called to see what we decided to do.  Dan and I said we are not going to add any medications or go up on any as well.   

Dani did gain weight this month!  She is back up to 25 pounds 11 ounces!  Her diet is going well and she tolerates it without any problems.  .