Sorry, for not updating in such a long time…

We made it back safely from Philly.  Dani does awesome flying.  Thank you Grandma Donna for flying with us.  Thank you Grandpa Durand for staying with the girls and Rex. Easter Sunday we spent in Brookings.  We also celebrated Abby’s 3^rd birthday as well.

Last week we spent getting the new pieces to Dani’s program ready.  Thank you Grandma Donna for making Dani a jacket to do one of her new respiratory techniques in.  I will be revamping Dani’s website so you can see what we are all doing with Dani.  Dan spent the week making Dani’s new food.  I ended up getting another cold that is kicking my butt, hence the long delay in updating her website.

Brianna starts soccer today.  Kaylee is going to take softball this summer. 

Now for the amazing news….

When Dan was doing Dani’s program with her, he accidentally kicked something next to her that made a loud noise.  Instead of her usual startle, she TURNED her HEAD and EYES in the direction the noise came from!!! 

Busy days…

Wow!  What a busy couple of days we have had.  On Monday, we got to the IAHP around 8:30 AM and we didn’t leave until 7:30 that night!  They loved to HEAR Dani protest so much.  This was something Dani could not do 7 months ago.    They even commented on her teeth!  Dani got many compliments on how she is such a hard worker and they know this because of the changes they NOTICED in her.  Last August, after they evaluated Dani, they calculated her neurological age as 1.29 months.  Now, she improved to 3.05 months!  Dani made the most gains in her Auditory.  Another big gain was in Dani’s language.  Not only that Dani loves to get everyone’s attention when she cries out, but her hums and growls are becoming more consistent.  They were equally impressed with Dani’s physical gains.  In August, Dani’s height was 88.5, to a whopping 93.0! That explains Dani going from wearing 2T pants to 4T.  Dani gained weight!  She went from 24.25 lbs to 26 lbs! 

Dani had a good day with Grandma Donna.  Since she was so stimulated on Monday, she slept pretty much all day.  This is one thing IAHP wants to help Dani with, her getting over stimulated and shutting down so much.  We will learn on Thursday and Friday, her new changes to her program.  I can’t wait!

We had a scare today, on one of our breaks, we had a missed call from Kaylee’s school.  The voicemail stated Kaylee did not show up today and they were wondering where she was.  Talk about making your heart stop!  After calling Grandpa, Kaylee was home sick.  Whew, I think that added a good 10 years to me…

We made it…

Well, we made it to Philadelphia.  What a Dani!  She spent Saturday throwing up when ever we would feed her.  Then on the way to the airport, she was gagging, and not sounding the best.  But she did well on her first flight.  We had a lay over in Minneapolis and the little stinker decided to POOP right when we were supposed to board our flight.  So, we had to go around the corner and change her quick since the family bathrooms were too far away.  Needless to say, she didn’t finish because she pooped again in flight.  We had to wrap Grandma Donna’s coat around Dani to contain the smell!  Dani is resting up for her big day back at the Institutes tomorrow.  She will stay at the hotel with Grandma Donna on Tuesday and Wednesday while Dan and I attend lectures.  Then on Thursday and Friday we learn Dani’s new program.  It will be one busy week….

Congratulations DANI!!!

Today is Dani’s first day COMPLETELY off the Phenobarbital!!!  So far, so good.  Two seizure medications down, THREE more to go!  I am confident to say that her seizure medications were interacting with each other and causing MORE seizures.  How else would you explain that by getting off two medications her seizures have deceased?  NO more 5 to 6 seizures an hour and lasting for over 10 minutes at times.  Now, we see at most 4 a day.  These new seizures don’t even last a minute.  It is amazing the changes we has seen in her.  She is more vocal, she can be quite the crabby patty at times.  She will cry out more, telling us “I’m tired”, “That hurt”, or her newest, “My diaper’s wet and I want it changed!”  She does the simple things again, coughs and now sneezes.  Things we take for granted in life, Dani can now do.  I cannot wait to see what other changes we will see in Dani!

Look Out Winnie the Pooh, here come DANI…

Everything is approved and Dani’s Make-A-Wish is scheduled for the week of May 18^th!  We fly out to Florida to Give the Kids the World on May 18^th and return that Saturday.  Grandma Donna gets to come along in case Dani has a bad day, Dan and I still can give Kaylee and Brianna one on one attention.  We can’t wait! 

Dani is doing a lot better now that she is not pooping every few minutes.  We are just re-filling her medications, getting enough medical supplies for her and tomorrow she gets her Kid Kart adjusted.  I think we are going to squeeze in a chiropractor appointment as well. 

Friday, the kids have off from school and I will be at home to start packing…

Close call…

Well, Dani listens to me about as well as Rex does.  She had  2 more poopy diapers after I threatened her with the ER.  I still didn’t want to admit defeat, so I called the pediatrician on call to see if I should bring her in.  She said to keep doing what I’m doing with the pedialyte and bananas and follow up with her doctor in the morning.  It was like having a newborn again, because we got up every 2 hours to give her fluids.  Our efforts paid off because Dani’s labs this morning were good.  She only had 1 poopy diaper today!  NO HOSPITAL STAY!

We are getting ready for our trip.  We fly to Philadelphia on Sunday!  Grandpa Durand is staying with Kaylee, Brianna, and Rex.  Ally is in for a rude awaking with Rex here…

One more chance Dani…

Let’s see, since Dani has become the poop queen, life has been grand.  But now she is starting to worry me since this is the 3^rd day of the poops.  I hesitate because I know this means a hospital stay for Dani.  Every hour she gets an additional 20 ml of pedialyte.  I called Dani’s favorite nurse, Jen, to see what else I should do.  Dani is also getting 15 ml of applesauce or bananas every hour as well.  When she does poop, she turns a blotchy red throughout her whole body and this will last about 3 minutes.  Dani is running a fever.  Her normal temp is 95.5 and she is at 98.5.  Other than that, nothing else.  She is awake and alert.  I would have brought her in yesterday if her seizures were out of whack, which they aren’t.  Dan had to remind me that I am dealing with Dani and she does her own thing.   I gave her one last chance, if she has another blowout, it is the ER we go… (I have her bag packed in case she decides not to listen)

Well, Dani started the day out on the wrong foot.  The minute I walked into her room, I knew I was in trouble.  She had one of her famous explosive diapers.  Yep, you guessed it, all the way up the back and in her hair!  It wasn’t even 7 AM and she was getting a bath.  We got her cleaned up and back into bed so she could get her meds and food.  Dani got her port accessed and she had another poopy diaper.  This one just looked like a fart gone wrong.  Since the girls didn’t have school, we went do Perkins for lunch since the girls had eye appointments scheduled for the afternoon.  As I am putting Dani in her chair, Kaylee screamed, “there’s poop on Dani’s back!”  Another blowout! Beans still has good vision, 20/15 actually.  But Kaylee, didn’t come out quite so lucky.  She had to pick out her first pair of goggles.  In about a week, she will be sporting her funky glasses that she picked out.  Dan and I were both in 5^th grade when we got our first pair.  On the ride home, the girls started gagging in the back seat.  Dani pooped herself once again.  I got her in the house cleaned up only for her to fill her diaper back up.  She had 3 diapers in a 15 minute span.  I am giving her extra liquids to help prevent dehydration.   It has been an hour and no smells are oozing from her room.  Oooh, I lied, Rex just took off with my sock and I had to go by Dani’s room.  Wheew, it was just another fart gone wrong for Dani.  Brian and Amanda took the girls for the rest of the afternoon.  They went to the move, Spiderwick Chronicles.  Thanks for taking them!    

Dani had a better day. She hasn’t thrown anything up since yesterday and her fever is down.  Dan said her seizures weren’t that bad, but when she did have one, her O2 stats would drop into the 70s.  Luckily, after it’s over she will bring them back up.  I went to the doctor today.  I have had a cold that I can’t kick and it seems to be getting worse.  They ruled out Influenza A and B and strep and said “its viral and has to work its course.”  I wanted to rule out anything bad for Dani’s sake…

Well, I was hoping Dani was just practicing on being a teenager when she slept in until noon.  She got up long enough for another diaper change and back to sleep.  Dan and I have been battling colds and we were hoping Dani didn’t catch it.  Dani slept in until 2:30 PM, and then she pulled out the big guns for me.  She is running a temp and is having a lot more seizures.  She also thought she needed to throw up.  I ran back into her room to get her suction machine because she started to choke on her puke.  Lovely, Rex seized the opportunity to try out Dani’s food in that quick second.  Needless to say, he is in a BIG time out.   Dani is holding pretty good stats at the moment, but she doesn’t look to good.  I talked to Dan and we are going to take shifts tonight because we are going to do our best to keep her out of the hospital.  As long as she doesn’t get dehydrated or seizures get out of control, we are going to keep her home as long as possible.