Bon Jovi isn't just for me anymore!!!! :)

It's been such a long time since I've posted here that I decided it was time to catch you up.  We have moved back to the county I grew up in (and now back in close contact with my high school best friend).  I am still a teacher but part of the leadership team at my school and I have more leadership responsibilities.  Guess I'm trying to get ready to have my doctorate in Educational Leadership this August.  It's been a long 3 years but it's almost over and I will glad - I'll spend that extra time snuggling with my sweet girl.  Speaking of sweet girl, this blog is about her so guess I should get on to updating you abut her.  

(While knocking loudly on wood) - she has been doing well.  Had to change all her specialist and her pediatrician since we moved but I am happy so far with the ones we've seen so far.  She's up to 103 lbs. so I now have a lift for her (haven't tried it yet - still waiting on correct sling for it).  Need to see new nephrologist so we can retest her urine to see how the medications have been working on her Hyperoxaluria.  She hasn't had any stones lately (another knock on wood) so hopefully it is working.  

As you may or may not know, I have been a Bon Jovi fan since high school - when they first came out - and now you should see/hear the positive impact that Bon Jovi's music has on Dakotah.  I used to play classical music CDs for her at bedtime to stimulate her brain.  Well, I decided about 2 years ago that I was going to start playing Bon Jovi CDs for her.  OH MY GOSH - she immediately responded by making such loud noises ("singing" for her).  I finally was able to capture it on video & posted to Youtube (http://youtu.be/cRnizUe5Ju8). Last night I fogort to turn it on and when I went back in her room to turn it on, I said, "Dakotah, I'll turn on your Jovi now" and she got the biggest smile on her face.  I really do wonder how much of what I say she understands - I think more than I even remotely realize.   

Before my time with her is gone, I took her to a Bon Jovi concert.  It was such a moment.  We tried so hard to meet the band but had no luck.  They did drive past us in their van when they arrived to the venue, but didn't stop or come out.  I'm praying desperately that I win a contest on Ellen Degeneres' website for 2 tix to the NJ show and most importantly a MEET AND GREET!!!! Oh gosh, this would be a wish come true! I would give anything to have a picture of Dakotah and the band! 

Well, have to get to work on that dissertation so I can graduate on time! :) 

Another diagnosis to deal with.....

Well, we are dealing with a new diagnosis as of March 1st.  Dakotah has a genetic disease/disorder called Hyperoxaluria (detailed info can be found at www.ohf.org).  Basically her liver is missing an enzyme and this is causing too much oxalate in her body.  She will have to undergo a liver biopsy to determine which enzyme is missing and that will also determine if she has Type 1 or Type 2.  She currently has her 2nd kidney stone (1st one was when she was 8 yrs old) and this time her pediatrician referred her to a nephrologist 1st instead of directly to a urologist for treatment of the stone.

The nephrologist wanted to find out why she keeps getting stones (the first stone was attributed to her seizure medication, Topamax, since that is a side-effect - although now we know that was not the case).  Thank goodness he wanted to do further testing.  She was cathed and had a foley for 48 hours to collect 2 24 hour urine samples.  There were several issues with the results but the most significant one was her oxalate levels.  Everyone excretes oxalate in their urine - it is a byproduct of metabolism; however, the normal levels should be 20-40 mg/24 hour period.  Dakotah's levels were 134 mg (1st 24 hrs) and 120 mg (2nd 24 hrs).  This is very, very serious and this is what is causing the kidney stones.  This will also eventually lead to calcification of the kidneys resulting in renal failure.

The only "cure" is a liver transplant.  All the literature says that a pre-emptive liver transplant is best because the person can keep their own kidneys if the bad liver is replaced with a good liver before renal failure.  If she has Type 1, the Dr. is going to try her on prescription strength Vitamin B6. This has been found to be effective in reducing the oxalate levels 30% of patients for a period of time, but transplantation does end up having to occur, it just buys some time.  If the oxalate ends up getting into her blood, it can get into her organs (including the heart and can cause heart issues).

For now she is on almost continuous fluids (including water throughout the night).  This won't reduce the amount of oxalate being produced but will at least hopefully get it out her body faster so it doesn't have the chance to form more stones or calcify her kidney(s).  She is also on 2 new medications/supplements 2x per day - Polycitrate K and Calcium Carbonate. She will see a urologist to have the kidney stone broken up into pieces via Lithotripsy (a same-day procedure done under anesthesia) so she can pass it.

We see the nephrologist again on 3/20.  I have so, so many questions now that I have researched this horrible disease.  I know this will sound terrible, but I thought 14 years ago that my sweet girl was given her death sentence when she was diagnosed with Aicardi Syndrome.  Now I am devastated knowing that the Hyperoxaluria is actually a faster death sentence and one that is almost certain if she doesn't get a liver transplant.  Please pray that they don't try to exclude her from having a liver transplant because she has Aicardi Syndrome.

Thank you Monsters in the Morning (104.1 in Orlando) & their listeners for our Christmas Wish

Every Christmas, a local radio show - The Monsters in the Morning (and actually further than local since they are on "I Heart Radio") incorporates Christmas wishes into their morning show the week before they go on their holiday vacation.  The DJs and producers are Russ Rollins, Dirty Jim (Jim Colbert), Daniel Dennis, and Drunky the Bear (Thomas Vann).  I tried every day they were doing wishes and FINALLY got through on the last day.  That morning I woke up and decided that Dakotah and I were going to wear our "I BELIEVE" wristbands that Marc Mero gave us (I will make another post about our meeting with Marc).  I hoped that the wristband message would somehow help me get through (as well as my many prayers).  I dialed and dialed, busy....busy...busy.  Then finally I heard Drunky's voice.  I couldn't believe it.  He asked if I had a Christmas wish and I replied, "Yes."  He asked me what my wish was and I gave him the short story of Dakotah, etc. and told him that my wish was for diapers and wipes for her.  He put me on hold.

When they came back from the break, Russ asked Drunky which line he should take and Drunky said, "Definitely line 7" (I can still hear him saying that).  I didn't know it was me until Russ came on the line and started talking to me.  He asked me what my wish was.  I told him that my wish was diapers and wipes for my daughter.  I explained about her having Aicardi Syndrome and being both physically and mentally disabled.  I told them that she is 13 years old so I have to buy adult supplies, they are expensive and my insurance won't cover them.  I also explained how long Dakotah has been waiting for services (13 years) and how we don't receive any services currently.  He and the other guys IMMEDIATELY said they were going to grant my wish but they had to figure out the best way to do it.  They put me on hold and then after talking for a few minutes, put me back on the air and asked me what I wanted for Christmas since I was wishing for something so selfless.  I honestly didn't have a wish - I was just so emotional and happy that I was going to get help with diapers and wipes for Dakotah. 

Well........my day that day (12/15/11) was an emotional day for me.  Brad from Family Jewelry and Pawn (see pic below) called in to say that he was going to give us a t.v., a PS3, and money.  Then when we met him, he surprised me with a manicure and pedicure gift card (my son is babysitting tomorrow and I'm going to enjoy that treat - I can't wait!!!) 

I got several phone calls during the day.  I won't list names as I don't know if people want to remain anonymous, but a teacher called and sent us some money.  Another family met us and gave us wipes, diapers, and disposable chair/bed pads (and some DELICIOUS brownies).  A wonderful man called and within 2 days we had a case of diapers and will be receiving a case of wipes.  Then this same man (G.) said that he would be ordering her a case of diapers and a case of wipes the first of the month for all next year.  I cried. 

I received an email from M.M. saying that he had already put something in the mail for us because he wasn't sure if we would get through or not.  Later in the day I received a phone call from an attorney who is going to help us try to get assistance (pro bono).  Neither of us know if we can make anything happen, but we are certainly going to try.  Another listener called and said that he would like to help and would be ordering some supplies from the website I use (http://www.allegromedical.com/). 

Finally on Friday, an out-of-state listener called and we spent a little time on the phone.  He asked about Dakotah and her syndrome.  I gave him the Aicardi Syndrome website and this blog address (which I hope he comes back once in a while to check on Dakotah).  He overnighted a very, very, special card to us.  I want him to know that I immediately called my mom and bawled to her (scared her at first bc she thought something bad had happened).  You sir will never know how eternally grateful I will be to you!!!!!

Thank you again to EVERYONE and to the Monsters for even taking the time to do this!!!!!! You really don't know how your kindness has touched my life this year!!!! Hugs to you all!!!!



Dakotah with her "I BELIEVE" wristband



Dakotah w/Brad from Family Jewelry & Pawn



  

It's been almost a year...why are we still struggling?

Well, it's hard to believe that it's been almost a year since Dakotah's spine surgery (11/16/10).  She is doing FABULOUS!!!! I am so grateful!  She got a new wheelchair - luckily it was covered 100% by my health insurance.  She's still waiting to receive ANY kind of assistance here in Florida; however, I'm not holding my breath because they are cutting funding to many programs within the Agency for Persons with Disabilities so I doubt they'll be picking up anyone from the waiting list any time soon. 

Unfortunately, I have to start our "Dollar for Dakotah" campaign again.  I found out about a week ago that I have to have $1400 worth of dental work done on my bottom left side.  I'm not thrilled but it isn't elective, it has to be done.  :( 

We still have the paypal account - dollarfordakotah@gmail.com that can be used.  If it is sent as a gift, Paypal won't charge the sender or receiver. 

I have to try to raise $1000 at the most to make a wheelchair van payment and then the rest will go toward bills since I have had to take bill money and pay the dentist.  Again, we won't really have a Christmas, but as long as we have a roof over our head with electricity, groceries in the fridge, and my van so I can transport Dakotah, I am happy!!!!  

ANYTHING would help though - $1 adds up if the word gets out there and gets passed around. 

Thank you in advance for any help anyone can give us!!!! XOXO

Dakotah met a new friend, Jim, and hung out with her bud, Bucky

Yesterday was such a fun day for Dakotah.  She got to hang out with her bud, Bucky Lasek (he was in Daytona racing) and she got to make a new friend, Jim Jonsin.  It was really a hot day but the guys did great in their race so it was worth it.  The Rebel Rock Racing crew were ALL wonderful to Dakotah and I!  Can't wait to see them again when they are back in town!!!!

Foot surgery a success but of course with a hiccup.....

Dakotah's foot surgery (triple arthrodesis with tendon lengthening) on her right foot was a success.  Her surgeon even said that he got more correction than he had anticipated (got her foot straighter).  Then came the "BUT"......"she's having trouble breathing".  At this point I wasn't overly anxious - she's had some issues before after surgery.  But then after 2 hours and I still hadn't been called back to be with her, I called back to her recovery nurse and they had her on a bipap machine to keep her airway open and also had her on 45 ml of oxygen.  This of course sent me into tears.  I was there alone and I think that made it worse.  I finally got to go back to sit with her about 4 hours post-op (still in PACU).  They took her off the bipap and O2 around 7:30-8:00 p.m. and her O2 sats stayed in the upper 90s.  She didn't have to go back on any O2 or anything and made it throught the night successfully. She is doing great!  She doesn't like the cast at all but who can blame her.  I broke my ankle not so long ago so I told her that mommy knows what she's going through. 

Fortunately Nathan (my son, her brother) didn't have college classes today nor will he have them tomorrow so he is able to watch her here at the house (yes, they discharged her less than 24 hours post-op - surprisingly, but I was very happy).  If he wouldn't have been able to babysit for me, I would have had 4 days w/o pay vs. the 2 I had to take.  She will be able to go back to school on Monday-just have to keep her foot elevated.  And since I teach at her school, I can administer any pain meds she may need. 

Thank you to all for your thoughts and prayers for her.  They were POWERFUL and I believe that it why we are home already and she's doing so well. 

                 

                                   With the bipap :(                                    Her hot pink cast :) 

                                                              Home in her comfy bed :)

Yet another surgery....I feel so bad for my sweet girl

Yesterday was another post-op appt with Dakotah's ortho surgeon (he did her spine surgery).  Her rods still look WONDERFUL and he is very, very pleased with the progress of the healing of her incision. 

However, now she has to have surgery on her right foot.  As you can see in the pictures, she is not able to put the bottom of her foot flat on a surface like she can her left foot.  You can clearly see the deformity.  This hasn't always been this way.  In 2007, it had progressed enough to warrant tendon surgery at Shriner's Hospital (in Tampa).  They did a tendon splat.  You can see the scar in one of the pictures.  Well, now she is far past just tendon surgery.  The surgeon is going to do a triple arthodesis.  This involves fusing the 3 main joints in the hindfoot (subtalar joint, talo-navicular joint, and calcaneo-cuboid joint).  He will also do a posterior tendon tibialis lengthening.  It's a 2 hour surgery.  She'll be in the hospital (Arnold Palmer in Orlando) for 2-3 days. Let's hope and pray she doesn't pull any stunts like the last time *wink, wink*.  She will be in cast for 6-8 weeks - that should add even more fun to lifting her.  Sorry - I don't mean to sound bitter - I know there are children (and adults) that have to endure far more than Dakotah. 

I am hoping for 3/15 surgery date bc we will be on our Spring Break and I won't miss time from work (bar any complications).  If not, then it will be 3/22.  He's pretty full on the 15th but Dakotah has a way with some of the nurses who then have a way with the surgery scheduler so hopefully we'll get the 15th.  I will update once I have a date.

I want everyone to know that this surgery is necessary.  If it's not done, her foot will continue to rotate and it will affect her being able to spend time in her stander.  In fact, already she is not allowed to be in the stander (it's a piece of equipment that has a lot of health benefits for her - see list below).  I don't care what her foot looks like - no one even notices.  I don't care that she is unable to get her foot into cute shoes or that I have to get on contortionist positions to cut her toenails (smile) - none of those things matter to me.  It's her getting back in her stander.  Also, I have read quite a bit online about this type of deformity causing pain and since she can't tell me, she could very well be in pain from this.  There are times when she lifts her foot/leg up and down making uncomfortable sounds, so who knows.

Benefits of being in the stander: 
Improved bowel and bladder function, enhanced respiratory function, reduction of pressure ulcers, prevention of lower extremity contractures, lower extremity weight bearing improves and maintains bone density, Improvement of circulation, strengthening of cardiovascular system, and facilitates development of appropriate alignment of the spine, hips, knees and ankles.

                                                                               


Left foot ("normal")



Right foot (rear view)

Right foot-knee all the way over to be able to get it this flat on surface.