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.

In the home stretch

   Dakotah is doing wonderfully!!!! She is tolerating so much more time in her chair.  Her most recent post-op appt was a good one.  Her pre-op curve measured 73 degrees.  Her post-op measured 29 degrees.  AMAZING!!! The other great thing - and even more important than the numbers - is that her trunk is now centered over her pelvis.  The doctor said this is the main goal of the surgery and it helps her hips.  She is also not drooling like she used to (since she's sitting up straight and her head is up all the time now) and doesn't have to wear bibs anymore.

She is back in school and I am finally back to work.  However, we still have a ways to go before we are out of the woods financially.  I did not have any income in the month of December so the county I work for billed me for all my insurance premiums (health, dental).  I now have to pay those back this month.  My paycheck on 1/15 will be significantly less than usual because I still have some leave w/o pay on it and then they are taking 1 of the 2 payments for my health insurance premiums ($250).  I will have to pay the other $250 out of my check on the 30th. 

I have managed to be able to make a van payment every 30 days so they do not take my wheelchair van; however I still owe for November, December and then January will be due the 30th.  This is the main thing that I really need help with.  I just can't lose my van or I will have no way of getting Dakotah to school and to all her doctor's appointments. 

Eventually I will get the utility bills caught up, but in the meantime I continue to rob Peter to pay Paul - when I do get some money.  Keeping groceries in the house also continues to be struggle.

I still have the Dollar 4 Dakotah paypal account set up and still welcome (and need) any gifts that anyone can give.  $1 is all it takes.  If enough people do this and pass it along to others, those dollars add up and can possibly pay my electric bill or a van payment.  The directions for giving can be found on the right-hand side of my blog. 

I appreciate everything everyone has done for us so far to help.  I know that without your prayers and support we could've ended up homeless again.  THANK YOU, THANK YOU, THANK YOU!!!!!!

Happy New Year to you all!!!!!!