Please say a prayer for Alec and his family.  He slipped into a coma and they do not think he will survive the week.

http://www.caringbridge.org/sd/alec/   

Dani got the OK to go HOME…

DANI IS HOME!!!  She got home in time for Trick or Treating!  Dani even lasted going to a couple of our neighbors!  Tony came over with Joana and Jasmin and Amanda came over.  The kids had fun. 

Dani will have a follow up appointment with her doctor on Friday to make sure everything is good before the weekend.  Brianna will celebrate her 8^th birthday on Saturday (along with old man Dan).  She will be going roller-skating with some friends.

   

Avera McKennan Hospital, Day 4

Good News!!!  Dani’s shunts aren’t causing the problem.  Gillette Children’s called late this afternoon and they do not see any issues with her shunts.   The neurosurgeon from Sioux Falls just came in and basically said the same thing.  So, now that we have neurosurgery’s blessing, hopefully we can go home soon.  Dani is still running her fevers but seizures are not that bad.   Dani may have a viral infection, causing her problems.  So hopefully we don’t have to celebrate Halloween in the hospital. 

Avera McKennan Hospital, Day 3

A big sigh of relief, Dani’s kidneys are working.  We got a scare yesterday that they weren’t working right because she wouldn’t pee on her own.  The kidneys look good and she had a VCUG to rule out bladder reflux.  But she will still at times require her bladder to be massaged so she will go to the bathroom.  It may be possible Dani has a neurogenic bladder.  Here is what I found on that…The muscles and nerves of the urinary system work together to hold urine in the bladder and then release it at the appropriate time. Nerves carry messages from the bladder to the brain and from the brain to the muscles of the bladder telling them either to tighten or release. In a neurogenic bladder, the nerves that are supposed to carry these messages do not work properly.   That would explain how when Dani pees, she floods the diaper.

Dani’s fever got worse.  She is currently running 99, her norm is 95.  She gets Tylenol and Motrin but it really isn’t helping.  We are also waiting on neurosurgery to see if indeed there is something wrong with her shunts.

It has been different having Dani in a different hospital.  Everyone has been really nice and helpful for Dani at Avera, but we do miss the staff at the PICU at Sanford.

Thank you Uncle Tony for taking Kaylee and Brianna over the weekend. 

Avera McKennan Hospital, Day 2

Dani is still hanging out at Avera.  She is doing what she does best, throwing curve balls.  She started peeing last night.  Her seizures kicked in.  She had a 15 minute one that she got an extra dose of Phenobarb and Valium.  She was up a couple of times with seizures, but at least they were not long ones.  Neurosurgery came in and said they were still waiting on films from Gillette.  Last I heard, Sanford finally found a CT of Dani’s and sent it over.  For some reason, they were unable to locate them?  Dani had her EEG this morning, just awaiting results.  We thought all was good, then this morning, Dani stopped peeing.  Not only that, she did her new trick for the nurse.  Her tummy will look comparable to like she swallowed a golf ball.  The nurse put some pressure on her bladder and she PEED!  She gets really crabby when this happens.  Dani is still running a fever.    Here is a picture of the little trooper…

Avera McKennan Hospital, Day 1

Dani kept me on my toes yesterday.  Poopy diapers galore!  The first one, she got a bath, the second one I got a bath and the third one she should have got another bath.  Then when she finally did pee, she did get another bath.  It was like the damn broke.   Then she spiked a fever.  But surprisingly, her seizures are not out of control.  I was suspecting a bladder or yeast infection.  So, I decided to bring her in before she got too bad.  I first brought her to urgent care, but they said to go to the ER.  So, off to the ER we go.  Blood tests, urine test, CT and x-rays, the norm for Dani.  So far we know Dani is dehydrated so you guessed it, another hospital stay.  Dani’s CT had some concerns so they are working on trying to get her records to compare to from Gillette and Sanford.  So, far we saw the pediatrician, neurosurgeon, and neurologist.  The game plan is to do an EEG in the morning and to wait for her old CTs to determine if her shunts are working properly. If they aren’t Dani may need surgery…she was doing so good…

Dani has had a great week.  One thing the Institutes warned us was that as Dani starts to wake up more from being on the program, she will respond more to things that hurt, irritate her, and she will feel more of her pain.  Be prepared that Dani will cry more.  When I heard this, I thought, hell, as long as Dani cries, lets us know something is wrong, I would be ok with that.  But now that Dani is starting to cry out more, it does get tough.  My instinct wants to stop what part of the program that is making her cry, scoop her up and take all her pain away.  But I know if I do stop her program, it will only put her further behind. So I continue her program and when I see Dani do a new movement I make sure she gets some extra snuggle time.  We are now doing Dani’s full program which makes her an even busier little girl.  But hearing Dani hum again makes it worth it.  Seeing her smiles again brings tears to my eyes.  Seeing her hands move when I tickle her rejuvenates my hope. Today when I was changing her diaper, Dani made me laugh.  As I was lifting her legs up she would push her legs down.  I was impressed at her strength that she had!  Now she didn’t just do this once, it was four times she fought me to bring her legs up.    She has a strong little heart whose endurance is never ending.   I can’t wait to see what Dani will start doing next…

Kaylee and Brianna are doing great.  They are getting ready for Halloween.  We have the Super hero theme this year.  Kaylee will be Super Girl, Brianna and Dani will both be batgirls.   

Grandma Donna came down this weekend.  She brought down pumpkins for us to carve.

Dani has had a very good week.  She is officially OFF the Depakote!!  Dani’s last day was Saturday and she is doing well.  We have been told horrible stories from previous neurologists that if she gets off any of her seizure medications, she will die.  Well, isn’t that “scientific logic”!  And yet when the question gets asked, “how do we know if all of 6 current seizure medications are reacting with each other and causing more seizures?”  The response?  We don’t know for sure, just that Dani needs her seizure medications.  I would like to know where the “scientific logic” is in that response.

Dani’s diet is going to be increased.  At least her fat and protein will increase to try to counteract her recent weight loss. 

We had two weddings this weekend.  Congratulations James & Nicole and LeAnn & Matt.  I packed up the gals and we headed to Jamestown ND for James’s wedding.  Dani scared me on the ride to Sisseton because she had to be suctioned a couple of times.  She did better once she got to Grandma’s House, so did Jasmin for that matter.  (She screamed from Watertown to Peever!) We made it to Jamestown with enough time for Dani to rest for the wedding.  Dani lasted part of the reception before having to take another rest.  She also lasted about 2 songs of the dance before she retired for the night.  We made many stops on the way home for Dani, once in Fargo, Sisseton, Brookings and then home.  It was too much excitement for Dani because Dan had to put her on oxygen for the night.  She is doing much better so far this morning, off the oxygen, but pretty tired.  I think it might be a long time before I attempt such a long ride for her again…

I am behind on my postings…

Monday

We put Kaylee and Brianna back in play therapy to talk out their feelings.   

Wednesday

Dani had a chiropractor appointment and she met with her new doctor.  Of course, she had to pull out the big guns to break this doctor in.  When Dani gets lazy with her cough, she sounds very coarse, raspy, and works really hard to breathe.  She started that about 1 hour before the appointment.  The doctor was very concerned and wanted to hospitalize her.  We assured him, this is typical for Dani.  He had Dani do a neb treatment and x-rays to rule out any pneumonia.  He wanted to know our comfort level and what we wanted to do.  We assured the doctor that Dani does this, she just needs to cough and she will be better.  So, luckily we got to bring her home.  After a couple of hours, Dani did cough and did much better.The girls had CCD.  I was told this time, Joana did not embarrass them.  Evidently after the first night of CCD, when the girls and Joana were walking out Joana said, “Hey, Hey you boy, what did you learn at church school.”  Kaylee and Brianna almost died.  First of all, I was told that Joana didn’t even KNOW the boy and secondly, it is not church school, it is CCD!  Leave it to Joana!

Thursday

HAPPY BIRTHDAY GRANDMA DONNA!!!

Friday

We hired a tutor to help Kaylee since we don’t always have the time to help her with the classes she is struggling with.  Thank you Amanda for taking Kaylee on!  Kaylee will go on Tuesdays and Fridays.  Brian and Amanda came over to play the Wii.

Sunday

We played Dani out by going to church.  She was big eyes the first 45 minutes, and then she said that’s enough.   Church ended up being 1 ½ hours and Dani spent the rest of the day sleeping.  Too much stimulation for her.