Kaylee is 10!!!

Just another busy week in the German house.  Play therapy, tutoring, CCD, Christmas concert and birthday parties!  Kaylee’s birthday was on Wednesday.  She really thinks it’s neat to be in the double digits.  She is having a party on Saturday with her friends.

I was going to say Dani is having another great week, but she likes to show us she is in charge.  I just talked with her neurologist about going down on another seizure medication since she is doing so well.  Last night she pulled into a 25 minute seizure before we could get it to stop.  I think it was because she didn’t want to go to Kaylee’s Christmas concert!  I stayed home with her while Dan and Brianna attended Kaylee’s concert.  This morning, Dani pulled into another 20 minute seizure.  This is not like her.  Dani is having seizures about every ½ hour and I don’t know what she is doing now.  So much for going down on a seizure medication….

Dani had a good day yesterday.  She was awake and alert so we were able to complete a lot of her program for the day.  Dani is starting to bring her arms up more when she stretches and I saw her kick her leg!  Little by little, she is showing improvements with great strides!  We see the “clear eyed Dani” a couple times a day, instead of the “drugged look Dani”.   Hopefully we can start going down on another seizure medication.  I believe Phenobarb was the next one on the list.   

We put our Christmas tree and decorations up.  The girls were busy making Christmas crafts yesterday.  I even got my Christmas cards in the mail.  The last two years, I had them addressed and ready, but they never went out. 

Happy Thanksgiving

We are spending the holiday at home.    The family should be down for dinner tomorrow.   We are thankful for Dani being able to spend another Thanksgiving with us.  We know how close we have come many times to losing her.  She has fought the odds , defied them more like it to be with us.  Every day is miracle that she is alive and I am privileged to be a part of her life.  This little girl is my hero and my strength.  She has touched so many people lives that I am awed by it.  I hope to spend many more Thanksgivings with Dani.

She started to do a new seizure on us.  This so far, is her worse one.  She becomes really rigid and holds her breath.  It is similar to a panic attack, where she can’t breathe.  Luckily, she has these for only 30 seconds.   She snorts during these and she is loud.  Hopefully, they don’t start to last longer. 

Uncle Chris sent up birthday presents for the girls.  He is always playing jokes on his nieces.  In their cards, he taped a nickel in Beans’ and a penny in Kaylee’s.  Kaylee was highly offended but Beans thought she was RICH.  She said Chris wasn’t smart enough to tape 3 pennies on hers to equal her age!  Beans was going to hang her card up but decided not to because Chris drew mustaches on all the Bratz characters!  And Chris, Kaylee says she is not 4 like you put in her card!  It was funny watching Kaylee open her gift from Chris.  First, she said he was mean because there was so much tape on hers, but then she said there were “sticks” taped in her present.  I could tell they weren’t “sticks” but played along.  All of the sudden, she screamed and threw her present on the floor!  Uncle Chris taped a fake spider on her present.  It stayed on the floor for awhile.  Kaylee was trying to talk Beans into taking the spider off for her.  Kaylee did take the spider off because the Polly Pockets were too enticing for her.  Not only did the spider scare Kaylee, but it scared Jasmin.  We put it in her pocket and she would spin in circles screaming at the spider!  Kaylee wouldn’t even save her cousin, she was probably glad she wasn’t the one getting picked on!

Dani and I had a slow morning yesterday.  First she sneezes on me, right in the face so I have baby goobers on my glasses.  Then she poops all over her bed and toys.  If that wasn’t worse, my hand slipped when I was feeding her and I got her food sprayed all over my face.  It defiantly was one of those days you just want to go back to bed and start all over! 

The girls and I attended Tea Sprouts Vendor Fair and Silent Auction on Saturday.  They are raising money for a new building.  

Sunday, Dani had a sleepy day then towards late afternoon, she started crying out.  Most of the time, she would cry out in her sleep.  I would reposition her, but she was still unhappy.  Kaylee and Brianna hovered nervously around Dani, because they have never heard her cry out this much.  I gave her some Tylenol and that calmed her down. 

Wow, been awhile since I update Dani’s website.  She is doing good, holding her own.  We are getting her back into her routine and schedule.  She does NOT like this time change for Daylight Savings, she gets quite cranky and wants to get put to bed at 7:30 PM!

 

Last weekend the girls went to Grandma Donna’s.  Dani and I pretty much spent Saturday sleeping.  We were both battling colds.  On Sunday, we went to Brookings to get the girls.  Dani was actually in good spirits.  She was vocal and “talkative”.  When Aunt Suzie and Grandma Donna held her, she got in her 2 cents!  She even had some smiles!

I attended Alec’s funeral today.  It was really unnerving being there because at any moment we can be faced with the same situation.  It was a good ceremony but hard.  We may never know why some kids struggle and others have it easy or what our plan in life really is. 

Miss Dani…

The birthday party went great.  Grandma Donna and Dani had a nice quiet afternoon.  Dani waited until I got home before she decided to be naughty again.  Dani started throwing up.  Late in the night, her diarrhea kicked in.  Today, I have been giving her Pedia-light every hour to help hydrated her.  So far Dani has given me 2 wet diapers, but one weighed 11 ounces and other was 10 ounces.  On the good side, NO SEIZURES.  I am not sure what Dani is doing now.  We did switch her diet back to what she was doing well on.  I can’t help think this is a coincidence that Dani started getting sick when we changed her diet.   We added two new ingredients that I think she may be having some sort of allergic reaction to??

HAPPY BIRTHDAY BRIANNA & DAN!!!

Hard to believe Beans turns 8 today.  She is already hitting Grandma Donna up to open a present up at 10:16AM and not wait for her party.  She was funny last night, the girls were playing in their room and I asked Kaylee to come out and help me.  Beans leans back in her chair and flashes me a huge grin and said, “yes, you can go wrap my presents!”  Thank you to Grandma Donna for watching Dani will we go roller skating.  Thank you to Amanda for going along roller skating since Dan is at work.

Goodbye Alec

I have been trying to write an update since yesterday.  But I have been staring at a blinking cursor and gave up many times.  I got word Alec, is at peace in heaven and he will no longer have to struggle.  My heart goes out to his family.  I know that any given day, it could be us going through the same situation.  Nothing is worse than knowing that one day, you will have to bury your child.  You should plan out your child’s birthday parties and wedding, not a funeral.  But then you feel guilty because your child can finally be at peace.  No more medications, no more painful procedures, no more hospital stays, no more struggles.   Dani has touched so many lives without even uttering a single word, as did Alec.  These little ones struggle day in and day out without complaint.  They take everything in stride that life has thrown at them without complaint.  They teach us to slow down life and enjoy the little things in life.  We all take so much for granted in life, it doesn’t see fair.