Dakotah's 2 wishes

Dakotah has 2 wishes - 1. Live Longer and 2. Meet Bon Jovi

I can't do much about her first wish, except to take the best care of her I can - take her to all her doctor appointments, give her medications, etc. but I can try my best to make that second wish come true.  Thanks to wonderful listeners of Tom and Dan's Mediocre Time Podcast, we have a hotel for the 3 nights and we also have had money donated that I'll be able to use to eat, etc.  One of my co-workers (I teach) actually put the airline tickets on her credit card until I can pay her back.  I also have to sincerely thank my true Jovi sisters who have stuck with me through this whole ordeal and have donated to help make it possible for us to get to Toronto - one step closer to making her wish of meeting the band come true.  I won't name them individually but if they read this, they know who they are.  :) I also have to thank my best friend of over 25 years for ALWAYS listening to me and being there for me to cry when things have been bad and take late night calls when I've been excited about something to do with this trip!  She knows who she is too.

Now if I can just get someone from the band, newspaper, news station to read the few most recent posts on this blog and get word to Jon and the guys, Dakotah's 2nd wish can come true.  She even has a little present for each of the guys.

I am feverishly emailing anyone I can find online that could possibly help.  And I'll be tweeting this blog address over and over and over in hopes it finds it way to someone that can MAKE IT HAPPEN!!!!!

Traveling from Florida to Toronto alone with a child in a wheelchair who is totally nonambulatory will be difficult, but she's worth every drop of sweat and every twinge of back pain.  I love Dakotah with all my heart!!!!!!!

The Details Behind the "Grant-a-Wish Catfish"

PLEASE help make a wish come true for teen with 3 life-threatening medical conditions.  Some of you may have seen my post back on 8/25 about this (and thank you so much to those who have already donated) but now I have more details that I can share with you.  I wanted to verify things before putting them in writing.  This post is a little lengthy but I feel compelled to tell you details so neither you nor any of your loved ones will be a victim of something like this like my daughter was.  I hope you’ll take the time to read it.

My daughter, Dakotah, has Aicardi Syndrome (neuro, epilepsy, scoliosis), Hyperoxaluria (liver/kidneys), & now Wolff Parkinson White Syndrome (heart).  We met a wonderful group of Bon Jovi fans through the Bon Jovi app & then became a part of a “Jovi sisters” group on Facebook. On 06/30/13 in our group chat, I was discussing how Bon Jovi’s music has positively affected Dakotah (she makes sounds to their music when it’s on – she can’t talk – I will probably never hear “I love you” from her). A member of the chat told me I should contact “Stacy Summers” because she might have a way to contact Richie (Sambora). Please note that everything in quotes came directly from messages from the people named.  I, in no way, made anything up. I also want everyone to know that the person contacted regarding the airline tickets (below) nor Richie Sambora had anything to do with this in a bad way.

Going back to 6/30/13, I contacted Stacy right then via private chat & after asking a few questions, she told me to hold on.  She came back in approx. 15 min & stated, “Ok you are in you will have tickets to the Vegas concert and the backstage VIP to meet the boys. And it's all coming from Richie Sambora he will be contacting me in the next for days to get address and more details”.  I even asked her about it again on 7/1, & she stated, “Yes he will make sure plus you will have your tickets VIP Backstage before that .So you're good”.  Also on 7/1 from Stacy, “Richie said he will contact me in the next few days with details and all” and “Everything will be perfect Richie is involved so it will be like a dream”.  I told Dakotah & this was her reaction to my friend talking to her about it - http://youtu.be/tSTuZ8yBbus.  On 7/4 Stacy then stated, “When Richie comes back to the states I will ask him to write some sort of letter so everything will go smoothly for our princess ... Everything is good for the two of you”.

On 7/2 I asked her via chat about a post I saw on her wall about the airline tickets.  She responded, “Yes he (Mike) contacted SW and told them what's going on SW promise him they will give our little girl Royal treatment. She will not be getting out of her wheelchair by TSA. TSA is going to allow her to remind seated. She will be taken care of with love.”  She also stated on this same date, “Now what Mike is trying to do is see if SW will donate the Airline tickets but I didn't say a word until he pushes his weight in there and confirm it”.  On 7/3 Stacy stated, “I'm seeing Mike tomorrow so he will have all details” & then on 8/8 she stated, “Jennifer, Mike is going to send you the Airline tickets he ask me if they were purchase yet.”  I asked again on 8/21 about everything because I had not received anything in writing & she stated, “I'm going to call Richie not sure how mike is doing it I will call him this eve”.  I tell you all this bc I finally private messaged Mike myself on 9/4/13 to ask him about his role in all this.  He replied (condensed version), “I am also so sorry for the mess you and your daughter have gone through. I was contacted by Stacy Summers and asked if we could provide free tickets for a Make-A-Wish child. I advised Ms. Summers, whom I have never met, to contact Southwest Airlines and did not hear anything further. I never offered to buy tickets and in my last communication with Stacy Summers, I told her I was not comfortable with the accolades being spread across Facebook because I didn't feel I deserved the recognition having done nothing more than refer her to another carrier. I have never heard anything more about this since she last told me she was handling everything. Until this note, I didn't even know the details of the trip, where it was going or anything about Bon Jovi. Again, God bless you and your family. This is very disappointing Ms Summers did this.”

Stacy exploited my 15 yr-old daughter by having me take a picture of my daughter holding a sign saying, “Thank you Mr. Mike…..” I did this on 7/12 after receiving this message from her, “I already did it. I handwritten on a piece of paper. Thank You Mike M. with me holding it up to the camera and sent text it to him. I was just wondering if you would like to do one so I can send it to him on his cell.”

Vegas is totally out of the question now due to time and money; however, the Toronto show on 11/1 is what we are shooting for.  Someone has already donated the hotel for the 2 nights and the airline tickets were so obtained (after the original posting of this post).

There are 2 ways you can donate – Paypal is one & the email address is dollar4dakotah@gmail.com.  The 2nd way is postal mail – Dakotah Hughes, c/o Jen Hughes, P. O. Box 92974, Lakeland, FL 33804.

Thank you in advance and please feel free to share this message with ANYONE !!!!  Also, if you have any questions, please do not hesitate to contact me.

Dakotah was victim of a "grant-a-wish catfish" We need your help to raise airline and concert ticket $$.

If you watch MTV, I'm sure you've heard of or watched the show "Catfish".  A catfish is basically a person who creates an online profile (Facebook, Twitter, dating websites, etc.) that does NOT have their picture.  They usually find pictures online from other websites or profiles and use those as their's (including family members).  Usually these "catfish" are out for love relationships.  Well, Dakotah and I have fell prey to a "catfish".  That is the only thing I can think to say about her.  We met through a Bon Jovi chat room on Facebook.  Back in June I was merely talking about how Bon Jovi's music has affected Dakotah (you can read previous post in the blog about that).  Well, someone else referred me to this person saying that she "may surprise me with who she knows".  Apparently the catfish (I do not want to use her name at this time - that will come later) has a FB profile that has her portrayed as someone she may not be - also not using her name because none of this was her fault. She apparently used a different name in our chat to "protect her celebrity identity".

On 06/30/13, the catfish told me in chat to "hold on while I make a phone call".  She came back approx 15 min later and stated that she had spoken to Richie Sambora (a friend of her's also stated that she got Richie to donate $50,000 to MAWF) and that Dakotah was being given VIP tickets and backstage passes to the Las Vegas show.  The catfish even had me go into our Bon Jovi group chat and tell everyone (this still blows my mind).  A few days later the catfish even said that the airline tickets were taken care of and that Dakotah would be treated like a "princess" at the airport and by TSA.  I told Dakotah and began making plans.

Fortunately I figured out in time that the catfish wasn't who she said she was.  I confirmed this through a relative of the celebrity she portrays herself to be.  I also confirmed things about her family to prove that she isn't who she has people believing she is. Furthermore, I confirmed with her "friend" that was taking care of the airline that he had no knowledge of the details of the trip (destination or that it involved Bon Jovi).  He further stated that he had never even met this person.  I did other research that I won't disclose at this time but trust me when I say, she victimized my daughter and is a "grant-a-wish catfish"!!!!!!!!!!!!!!!!!!!!!!!!!

I did not seek her out - she sought us out in that chat and since someone else vouched for her, I had no reason to doubt at the time (plus I guess I was blinded by the joy that my daughter would get to meet Bon Jovi and they would get to meet a teenager who has been touched so much by their music that she "sings" (make noises) to their music even though she cannot talk.

So, the Vegas trip was too expensive to raise money for so that is why it has been changed to Toronto.  I am making contacts daily to try to make the meet/greet happen.  I am posting on Facebook, Tweeting, emailing, etc. anyone and everyone I can think of.  I HAVE to make this happen for Dakotah.  I cannot go through Make-a-Wish because approximately 5-6 years ago Dakotah received a wish and it was a t.v. for her bedroom and dvd player for the van.  I have found a local radio station in Toronto that I will be contacting this week.  But I have to raise the money to get us there first.

If you can pass this along, I would greatly appreciate it.  November 1-2 isn't that far away.  I still have to raise $365.20 for the roundtrip airline tickets (they cost $515.20 but just received donation of $150 today).  I have try to raise this money quickly before the non-stop flights at that price sell out.  Since she has rods in her back, she really needs to fly nonstop.   I also have to raise $700 for the concert tickets (5th row due to vision issues she has) and $300 for the hotel (we have to be close to the venue the night of the concert so I have a place to get her out of her wheelchair to change her diaper, etc).  She has visual impairment so she needs to be on the floor as close to the stage as possible but she cannot stand/get out of her wheelchair.  I will stand the whole time - who sits at a Bon Jovi concert anyway, right???

There are 2 ways to donate - I have a PayPal account - if you have a Paypal account, you can send to her Dakotah's account at dollar4dakotah@gmail.com.  I have also set up a post office box if anyone wants to remain anonymous or doesn't have PayPal.  That address is Dakotah Hughes, c/o Jennifer Hughes, P.O. Box 92974, Lakeland, FL 33804.  

One more life-threatening medical condition to add to the list...Wolff Parkinson White Syndrome

Well, Dakotah was diagnosed with Wolff Parkinson White Syndrome last Thursday but it has taken me this long to be able to type it because it makes it more real.  I am still digesting that now her heart has a genetic defect.  I still don't know everything about it so I won't even try to explain it.  The best thing for me to do at this point is to refer you to the web to find out about it.  The cardiologist said that for now we will monitor her since she is non-ambulatory.  If she were a "typical" 15-year-old, they would do an ablation procedure that would prevent her heart from having irregular rhythms and accelerated heart rates.  What concerns me is that her heart rate increases when she has her nightly seizure (or any seizure) so if her heart kicks into an even higher heart rate during a seizure, she could go into cardiac arrest.  I was told by the cardiologist that if she goes into the 170s, then to call 911.  Luckily I have a pulse oximeter so I can monitor her heart rate and it alarms very loudly so it will wake me.  For now we wait for the 24-hour holter monitor results to see if she needs to be put on any medications.  They want to try to avoid any more meds since she's already on so many for the epilepsy and Hyperoxaluria.  Sometimes I just ask myself, "When will enough be enough for her?"

Trying to grant a wish for Dakotah....Will you please help?

Please help grant the wish of 15-year-old Dakotah to meet her favorite band - (Please share if you can)

Back in July, a wish for my daughter, Dakotah, was started by someone met through Facebook – to meet Bon Jovi. Their music has touched her so profoundly that even though she cannot talk, she “sings” to their songs when she hears them.  This wish included going to the MGM to see the show and meet the band (airline tickets, concert tickets and the backstage passes).  She was so excited when I told her.  However, as of today (8/25), the airline and concert tickets have not been taken care of.  Meeting the band is already being seen to.

You see, Dakotah has several terminal, life-syndromes (Aicardi Syndrome, Hyperoxaluria, and Wolff Parkinson White syndrome. There is a very, very high probability that she will not be living the next time Bon Jovi tours.  

I’ve reserved the hotel room at the MGM (concert venue) by using my summer school pay. However, I need to raise $1270 for airline tickets (due to having rods in her back and being wheelchair-bound, she really needs non-stop and this is a non-stop flight through Southwest) If someone has miles that they can use to help us with the tickets, that would be great.  No other airlines fly non-stop.

I need to raise $502.15 for the wheelchair accessible concert tickets (these are floor seats so she can be as close as possible due to her vision impairment and hopefully they’ll move us closer).  I have set up a Paypal account just for this wish for Dakotah – if you give as a gift there is no cost to you or to Dakotah’s Paypal account.  If by some miracle Bon Jovi’s organization gives us the tickets, I will promptly send back the money to those who donated.  I am not doing this to “make money”.  The Paypal acct email is dollar4dakotah@gmail.com.  (If 888 people donate $2 each we will raise the money for Dakotah’s wish!!)

Here are links that I wanted to share with you –

YouTube videos of her “singing” to Bon Jovi’s music –

http://youtu.be/5tJtNnWVgy4   http://youtu.be/5tJtNnWVgy4  

http://youtu.be/W0BrdSZzI_s    http://youtu.be/V-05TqsFzvQ

Here is the video of her reaction to going to Vegas to meet Bon Jovi – http://youtu.be/tSTuZ8yBbus

The blog address that I have for her – http://singlemom2preciousgirl.blogspot.com/

You may ask why Make A Wish Foundation is not involved, well, Dakotah had a wish from them before she was touched by Bon Jovi’s music and they only do one wish in a lifetime.  Also, flight organizations such as Angel Flights and Operation Lift Off only fly patients for medical appointments. Please trust that I have explored these options prior to putting out this request. 

I THANK YOU in advance for ANY assistance you can provide to me to help me make this wish come true for my daughter. I love her with all my heart and it hurts my heart to think this may not happen for her. 

Jen 

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.

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!!!!!!

The final stretch - Please HELP!!!

Well, Dakotah is recovering very well from her surgery.  Her surgeon was very pleased with the rods/wiring when she had her xray at her last post-op appt.  She is now tolerating 2 consecutive hours in her wheelchair which is an improvement.  The first week she was only tolerating about 30 minutes.  Please continue to pray for her as her recovery is not over yet.

The month of December is the hardest for us financially.  I will not be receiving any regular paychecks this month.  So far we are surviving but it isn't w/o sacrifice.  We have our tree up, but there won't be any presents under it again this year.  I'm okay with that because my present is of course that Dakotah made it through her surgery.  But I do have an 18 year old that even though he says he understands (and I know he does), it still breaks my heart that I can't even afford to buy him stocking stuffers. 

I am pleading with anyone reading this to please give $1 to Dollar 4 Dakotah and pass this along to all your friends, family, and anyone you can.  It can be done via paypal.  If you send the $1 as a gift, there isn't a fee to you or to Dakotah.  The email address to use is dollar4dakotah@gmail.com   I desperately need to raise about $600 to get us through this month - this is just for bills - not for Christmas.  I will be back at work in January because Dakotah will be able to return to school.  I am a single parent so I am the only one to be home with her during her recovery (this is why I am not getting paid this month). 

I thank you so much for any help you can give us.  If you aren't able to give, can you please just pass along our need?

Jen

Finally got an answer re: rash

                                         Pics from 11/22 - this is what is all over her body.


Well, thank goodness!!! We have an answer to the rash.  It's actually called Red Man Syndrome and is caused by a drug eruption thanks to the Vancomycin (a very strong antibiotic) that was impregnated into the bone graph that they used in the spinal fusion.  The reason it got worse before finally starting to clear up tonight was because as the bone graph fused to the spine, the Vancomycin got more into her blood stream.  We started the Benadryl again and it seems to be working this time! There are no other treatment options.  It just has to run it's course and that could be weeks.  It has started to clear up on her stomach/chest where it first started so she will most likely be discharged tomorrow (Wed).  We will get to be home for Thanksgiving! I'm anxious to be home and excited to put up my Christmas tree this weekend (even if there won't be any presents under it this year). 

Thank you for all the Facebook support! It has helped keep me going! And I want to especially thank my dear friend Amanda! She calls everyday to check on us, has visited us 4 times, sat with Dakotah Sunday so I could go home and get clean clothes, and brought me dinner twice! I am so grateful for her friendship!!!!

XO

Where is this rash coming from????

Well, Dakotah is on day 3 of a really bad rash and today it has gotten a little worse.  It's all over her torso (front and back) and groin area moving down her thighs a little.  It looks like a really bad sunburn is the best way to describe it.  Day 1 the doctors/nurses thought maybe she was having an allergic reaction to the morphine.  Changed to Dilodid.  Rash stayed...got a little worse.  Then they thought maybe it was the antibiotic...changed that. Rash stayed....got a little worse. Changed her pain meds again.  Rash stayed...got a little worse.  I know she's not allergic to laundry products because I've never had that problem and it's not all over her body.  It is also warm to the touch and the doctor said that is indicative to an infection.  Ortho dr. says the incision looks great and I agree with him so we don't think it's that.  They did a throat culture (to test for strep), chest xray, and drew blood today.  So far, first strep test was negative (but waiting on cultured one still), chest xray good - no pneumonia.  Nothing apparent popped up in her labs. 

It's really strange - I've never seen her have this kind of rash.  Please pray that we get an answer soon so that it can be treated and start clearing up.  I won't let them send her home from hospital until it's going away or we have an answer and are treating it.  Benadryl wasn't even touching it.  They did say her throat was really red this a.m. so they started her on Z-Pack (Zithromax).  She is resting very comfortably and the rash doesn't seem to be bothering her (thank God).  I'm hoping by tomorrow we see some improvement. 

Since I'm not a big college football fan, Netflix has become my best friend today!!!!

Surgery was a success!!!

I am happy to be posting that Dakotah's surgery was very successful and so far she is recovering very well.  she is still in quite a bit of pain and has to be on regular pain medication but that is to be expected.  She got moved today from the Special Care Unit to the regular ortho floor.  The room is much smaller, but cozier and her bed is closer to the t.v. so that is great for her.  She also got her new wheelchair today and spent an hour in it. 

We will be here (Arnold Palmer Hospital in Orlando) until at least Sunday, 11/21.  The dr. hasn't started talking about release yet.  She does still have the drain and obviously that will have to be out.  She got her cath out today and is on her feeding pump for nutrition/hydration (no more IV)!!! This evening she even smiled at me and made some sounds (this is her talking)!!! I was sooo excited to see that smile!

I am convinced that all those thoughts and prayers from around the country are what have caused her to do so well.  I came into this surgery not knowing what to really expect.  Of course I thought about the bad things, but didn't necessarily expect them.  However, I do have to say that she's done MUCH better than what I expectations I did have.  She's a little fighter that girl!!!

Thank you for your prayers & support! Please keep them coming.  Also, our financial need for Dollar 4 Dakotah still exists so please pass along our blog and the information for that if you can!

XO

Only 11 days before surgery

Well, there are only 11 days until Dakotah's surgery.  Every day adds a little more anxiety for me.  I have started setting stuff out that I need to pack since we will be at Arnold Palmer Hospital in Orlando for a minimum of 5 days.  I am taking her angel bear that I bought when she was 2 months old and had brain surgery.  I've also packed comfy pjs for me.  I'm definitely going to remember to take my own pillow and comforter.  I will take Dakotah's pink/purple quilt that her grandma made for her to add some color and a touch of specialness to her bed.  Its those little things that will help make the stay a little more bearable.  I also have a dear friend, Amanda, who is putting together a food basket for me of snacks so I don't have to leave Dakotah's room very often. 

Thank you all for your continued support and prayers.  It does mean a lot and I am so overwhelmingly touched by the bonds that I have formed with people that have never even met us (my Twitter friends) XO

Thanksgiving is this month - Here are some thoughts on my thankfulness

I am thankful that the little girl who doctors said would not live past 1 is now about to turn 13 years old in February. I am so thankful for the smile that I get from my daughter that is her way of saying, "I love you". She has a rare syndrome and cannot talk. I may never hear those words or hear her call me mommy, but I am thankful that she has a special way of communicating to me that she loves me and knows I'm her mommy. I am thankful that she has a pediatrician that listens to me, includes me when making decisions about her medical care, and trusts me to research things that she needs. I am thankful that she can cry to let me know she's in pain and laugh to let me know when she's happy. I am thankful that I have had the strength to raise her alone. I am thankful that she has my eyes. I am thankful that she has been relatively healthy so far. I am thankful that I can give her endless kisses and she can't tell me to stop :-)


Ellen, as strange as some people may view this, I am thankful that I was chosen, no, I was BLESSED to be her mom. She has taught me not to take a single thing for granted. She has taught her older brother to be appreciative of his ability to walk, run, talk, drive a car, have a girlfriend - all the things that she won't be able to do. I AM THANKFUL FOR MY DAUGHTER, DAKOTAH, and I am thankful to her for making me a better person!!!!!

Dakotah's Halloween

Finished Product

The beginning

Who says being in a wheelchair means you can't have a great costume? All you need is a creative mom whose willing to take the time to come up with something.  I'm going to be Batgirl for my sister's birthday/Halloween party so I wanted Dakotah be themed along with me.  I found an inexpensive Robin costume for her (trying to pinch pennies but still wanted her to have Halloween).  I wanted her to have a Batmobile around her wheelchair.  Luckily I had a couple of big boxes in the garage so I went to work.  It was a big success and I am very happy with it!  She's not too thrilled with the mask so we'll have to figure something out with that, but she looks adorable in it!