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! 

Surgery is one month away now!

Well, Dakotah's surgery is officially a month away now (11/16).  I think I am prepared for the actual surgery itself, its just the recovery process that I'm really worried about.  Since Dakotah can't talk, I am worried about her pain management and me knowing her cries/moans so she isn't in pain more than needed.  It also just breaks my heart to think of that huge incision going down her beautiful back and the scar that will be left behind.  She is like a beautiful porcelain doll and I hate to think of her little body being scarred but I know it has to be done. 

I had a great friend donate 1 blood yesterday for of the units of blood and my son (her brother) donated a unit yesterday in hopes that he will be a match for the other unit that she will need for surgery.  We will find out Wednesday if he is.  If he isn't, there are teachers that I work with that are willing to donate for her.  I am so grateful that God has sent these people into my life!!!!

Donations for Dollar4Dakotah have pretty much stopped.  I think I need to do more on Twitter about posting the cause.  But I am NOT giving up hope yet!!!! We made it through a really tough time last fall as well and even made it through being homeless for about a month so I know that God will see us through this as well!

XO

Disability History & Awareness Weeks

On 6/13/08, Governor Crist signed a bill that made the first two weeks of October "Disability History & Awareness Weeks".  So, this week & next week (as I did in 2008 & 2009), I am doing a presentation to the entire middle school where I teach.  I divide up the students by grade and do the presentation in small groups to allow for more time for questions and more individual attention to the students.  I have gotten a great response from the 6th graders so far!  It's encouraging.  I share a video of Dakotah and then talk about the history of people with disabilities and how we need to see their ABILITIES not their DISABILITIES!!!

I wish I could attach the Power Point that I made and am using! I do this not only to make the students aware of how to treat people with disabilities but to jump start our school's bully proofing program.  In light of the recent bullying stories, we educators HAVE to do MORE!!!!!

Just $1 will make a difference

Hi everyone!  I just wanted to make sure everyone knows that there is no minimum amount that can be donated to Dakotah's paypal account (dollar4dakotah@gmail.com).  People with a paypal account are able to give a gift to her without any fees! 

If enough people pass the word/cause along and enough donate just $1 to her account, it will add up!!!! If we don't get this help, I don't know what we will do or how we will make it.  I am going to have so much stress worrying about her making it through this surgery and all the recovery it requires that I'm hoping not to have worry too much about the hospital copay, insurance premiums, and regular bills.  (Even though I have to take a leave of absence from teaching to be home with her, the bill collectors won't be taking one.) 

I am TRULY grateful to EVERYONE!!! Even if you are unable to donate, will you please pass along her paypal account information and my blog information to your family and friends, Facebook contacts, Twitter followers (my username on Twitter is jenscrmom06)?

                            (This was taken a few years ago, but the message is true today!!)

Thank you so much for all your support and prayers!

XO
Jen

My happy girl

This is a video of my sweet girl making her happy sounds!  She even actually laughs in this video!  For some reason she seems to always look up when she smiles really big (you'll see that in the video).  These are the things that I hope she doesn't lose the ability to do after her spine surgery!  I love her so much!!!!

Update on Dollar 4 Dakotah

I am happy to say that we have received $45 in the Dollar 4 Dakotah paypal account and then another $20 in the mail.  If we can just keep spreading the word, I know it will add up.  If we get enough people to donate $1.00 each, it will make a HUGE difference!!!! 

Also, if you are on twitter, will you please tweet Ellen Degeneres the blog address - http://www.singlemom2preciousgirl.blogspot.com/?  Her twitter name is @theellenshow.  Also, she does have a fan page on f/b and people can post a link there as well.  I just pray every day that she'll see our story and she'll choose us this year to be one of the families that she helps!!!!

Thanks again for all your support!!!! It really, really means a lot to me! 

XOXO

Today was a good day

I don't want this blog to be all negative.  Today was a good day.  I got the yard mowed and my closet cleaned out.  Most importantly I found a twin mattress at a yard sale for my bed in Dakotah's room (I will be bunking with her after her surgery).  I'm so relieved that I have that all ready. 

Another very nice thing happened to me today.  A few years ago I met Audra.  She is a massage therapist and during my first massage with her (a gift from someone) we started talking and discovered that we both have children with rare syndromes.  She has a son.  We have become very good friends over the years.  Well, she sent me a msg on Facebook today that I can come get a massage on her!!! I am sooo excited.  I've been so stressed out lately that I really need it. 

I also got the posters made and the donation "can" made for the walk that we are having on the 28th.  I hope you all have a wonderful week this week!!!!

Important information about donations

Hi everyone!  I need to let you know some information I found out today regarding donations for "Dollar 4 Dakotah".  Unfortunately, you won't be able to claim them on your taxes because I am just a mom (with the help of "VOLUNTEERS") trying to raise money to cover medical and living expenses due to being out of work because of Dakotah's surgery.  Per the IRS, "Only donations to qualified organizations are tax-deductible" and Dollar 4 Dakotah is not a qualified charitable organization. It is just a name I came up with for the cause.


So, any donations you make to our cause are just out of the goodness of your heart!  Please know that I understand if this deters any of you from helping.  If you still would like to help, I was able to open a bank account in Dakotah's name today to link to her paypal.  Again, the paypal address is dollar4dakotah@gmail.com.  If you don't want to do the donation through paypal, you can mail a check to us.  Please email me at scrmom6@gmail.com and I will give you my mailing address.

Again, I am very, very sorry that you won't be able to claim on your taxes those donations made specificially for Dakotah! 

XOXO

THANK YOU!!!!

There are not enough words to express my gratitute to EVERYONE for your support!!! I am so grateful and blessed that people are coming together to help us!  Some I know, some I don't know but am getting to know through this whole process.  It amazes me at the love and support that complete strangers are giving to Dakotah and I. 

Many are asking how to help - I have set up a paypal account for Dakotah and you are able to donate via a Personal gift using her email address - dollar4dakotah@gmail.com  Also, if you are on twitter, please help us by sending Ellen Degeneres the link to the blog (http://singlemom2preciousgirl.blogspot.com/) Ellen's twitter name is @theellenshow. 

Thank you again and know that I love all of you and consider you all blessings in my life!!!!

Birthdays

When Dakotah was born the doctors said that the prognosis wasn't good, she wouldn't live long and what years she did live would not be good. Well, 12 years later I am happy to say that while we've definitely had bumps in the road (some small, some large) that she is still with me.  As she gets older, birthdays become more and more bittersweet for me.  I celebrate that she has lived another year, yet I wonder if that will be the last birthday.  I have added a slideshow at the top of my blog of pictures of her from most of her birthdays through her most recent 12th birthday. 

My final thoughts for tonight.....

I will probably never find a man as long as she is living and I have to take care of her. I met one guy online on eharmony and as soon as I told him about her, he never emailed me again. I don’t know how long she will live – right now she is past the usual odds but most of the girls pass away before reaching 20. But as long as she lives, she will live with me and I will be her caregiver. I will NEVER put her in a home and if I had to quit my job and go on welfare to care for her, I would. She is my heart and I love her so much. She has taught me so much about appreciating the small things in life. I will probably NEVER hear her say “mommy” or “I love you”, but I know she knows who I am and I know she loves me when she gives me a big smile when I talk to her or say her name. I do have days that I’m not strong. I know this may sound strange to you, but I see cute panties and bras in Target and wish I could take her shopping for them. Instead she wears a plain old white diaper and doesn’t have to wear a bra because her bib covers her chest. I know I won’t talk to her about boys or makeup or her first date or her first love. Those are the sad thoughts for me.

A typical day of daily care for Dakotah

Mornings – feed her breakfast (a prescription formula) through her feeding tube. Give her 2 different meds for her seizures. Change her diaper. Get her dressed. Get her up in her chair, load her in the van and we are off to school.

Evenings – when we get home I lay her down in her bed and turn on her cartoons. I change her diaper and get her dinner ready (again, the prescription formula). She gets the same 2 meds again. Later in the night (usually around 8-8:30 p.m.) I get her ready for bed. I change her diaper again, tucker her in, give her lots of kisses and turn on her classical music CD. A couple of hours later I go back in to sit with her while she has her nightly seizure.

She usually only has one a day unless she’s getting sick and then she’ll have a lot. I have a prescription rectal gel valium that I can give her if it gets too hard or lasts too long (in fact, just had to give that it her the other night). She now also gets a Depo-Provera shot every 3 months in hopes that it will eventually stop or at least decrease her periods – yes, she is a little woman. She got her period about a year ago so now I have that to deal with also. I feel so bad for her because she cramps and is so uncomfortable but she can’t talk and tell me.

I’ve changed many a diaper in the van at soccer fields. I’ve been a single mom and I couldn’t let Nathan down. He’s played soccer since he was 6 years old – all of Dakotah’s life. She goes right along. Rain or shine we’ve been there. If I have to grocery shop (now that Nathan is gone), I push the chair and pull the cart. I will do whatever I have to do to ensure that she has a quality life.

What Dakotah doesn’t get

Dakotah doesn’t qualify for SSI (disability checks) because I “make too much” – that’s a real joke since I live less than paycheck to paycheck. As I said previously, she’s been on the Medwaiver waiting list for 9 years. I go to Tallahassee every March with her for Developmental Disabilities Awareness Day at the Capital and talk to Senators and Legislators. Senator Nan Rich is furious every year that we see her and tell her that Dakotah is still on the waiting list. She always has her aide call the Agency for Persons with Disabilities. Somehow they miraculously find some money to buy her a one-time order of diapers. My insurance doesn’t cover diapers and they don’t cover respite. I have to pay someone to watch Dakotah (difficult when I don’t even have money to pay bills – a real catch 22) so I can go to class and that’s if I can find someone that is able to care for her or willing to care for her. It’s so hard Angela but I can’t give up – I’m not a quitter.

I don’t receive child support for her. I don’t receive any nursing or respite care. I do think that my insurance will be covering a nurse to help me with her during her recovery but this won’t last long and I have to be in the home at all times so I’m not able to leave and go back to work. People see her in her wheelchair and think that she gets it all when in reality she gets nothing – well, except for stares from others.

A dear friend asked me to post this - Christmas, Dakotah’s favorite things, Nate’s college

I don’t care about Christmas presents – my Christmas wish is just that I don’t lose Dakotah during this surgery (I get more nervous with every day that passes and her surgery date gets closer) and that her recovery isn’t extremely painful for her – I hate that she won’t be able to communicate her pain to me – I will have to gauge her baseline and cries/sounds. I’m sure Nathan would love to have gas money. He was working part-time when he was living at home and he paid for all his own gas and car payments but since being in college with a course load of 15 credit hours, he can’t work. He doesn’t really need or want anything materialistic. We are doing okay for his college expenses. He does have a prepaid college fund for his tuition hours and then he got several grants this year since he’s a first time college student. I am using student loans to pay for my doctorate classes but have to pay for books ($295 this semester – 2 classes – 6 books – ridiculous). It’s hard doing classes and working, but since I can’t get any help for Dakotah, I have to do something so that I can eventually make more money.

Dakotah’s favorite thing – talking about this brings tears to my eyes Angela!!!! Dakotah LOVES to watch t.v. (especially cartoons – Spongebob in particular.  There’s nothing else she can really do – she can’t play with toys or anything. A few months later I also had to pawn our living room t.v. (not good bc she needed that to watch when she is up in her wheelchair or laying on the couch), video camera, digital camera, anything I could find to get money to buy groceries, pay essential bills. I had an old style 19” tv in my room that I moved out into the living room. (Of course Nate was bummed about having a smaller t.v. in the living room but he accepted it like the good son that he is and understood why I had to do it).

As of this posting today (9/13), someone has already offered to buy Dakotah her t.v. for her bedroom and then someone else is giving us a t.v. for our living room. One that is larger enough for her to be able to sit in her wheelchair back by me on the couch and not have to sit way up close to the t.v. (due to her vision issues). I thank God for these people for these donations to my family.

We still have a ways to go to get the bills caught up, especially my van payment but my sweet "angel" Angela is helping us. She is heading up a walk on 9/28 to help raise money for our family. I am forever indebted to her and to all those who are coming together to help us!!!!

Current financial situation and how Dakotah's spine surgery will impact us –

I only have 4 days of sick leave to use (and that’s provided I don’t have to use them between now and Nov). I can’t join our sick leave bank because Florida Statute states that the sick leave bank can only be accessed for the employee’s illness – not any family member for ANY reason (personally I think this is ridiculous). I will not have ANY income in December (that’s $3273 gross and $2334 net). My insurance premiums won’t get paid – that is a total of $690 for December. Fortunately they will bill me but then that means that they will deduct the money in January so my January checks will be a considerate amount less than usual.

I am still 2 months behind on my wheelchair van payment-$472/month (owe 7/30 and 8/30 payments). I thank God every day that the lender has been sympathetic to my situation and has not repossessed the van. If I lose the van, I can’t transport her because she has to ride in her wheelchair. I don’t know how I’m ever going to get caught up – especially since I won’t have any income to pay December’s payment and will have trouble with January’s payment.

I have 4 credit cards that I have to try to make the minimum payment due. 2 are giving me hardship payments ($65/mo on one and $80/mo on the other one).

I have electric, water, cable/internet, cell phone, Nate’s car payment ($330/mo-so high bc my credit is bad and he has no credit but he needed reliable transportation to get back and forth from college), car insurance ($400/mo for both our cars – CRAZY).

The hospital stay will cost me $1250 for the copay ($250/day for days 1-5). I will definitely need help with that. Her monthly seizure meds are $21 in co-pays.

Timeline of Dakotah's major life events

I should preface all this by saying that I’ve pretty much done this all on my own with no child support or medical/financial assistance from the state.
TIMELINE OF HER LIFE –

2/10/98 – Dakotah was born @ St. Joseph’s Women’s Hospital in Tampa, FL.
She was delivered via c-section after she wasn’t dropping down into the birth canal. There were no complications other than that and at 3:51 a.m. on the 10th I held my beautiful little girl not having ANY idea that anything was wrong with her.

4/1998 – Dakotah began having strange clusters of movements so I took her the pediatrician. Luckily she did it while we were there and he said that she was having a seizure. He referred us to the neurologist
who ordered an EEG. The EEG was uneventful so it didn’t really show us anything.

4/17/98 – Appt with neurologist for results of EEG. Inconclusive. She started having a cluster of seizures at his office so he admitted her to University Community Hospital for an MRI. On Saturday, 4/18, the neurologist came in and said, “It’s not good. She has 4 cysts in her brain and needs surgery immediately.” She was transported from UCH to All Children’s Hospital in St. Pete, FL. and put in ICU. That was the longest ride in that ambulance. They attempted to stabilize her seizures and then I met with the neuro-surgeon that would be performing her surgery.

4/28/98 – A craniotomy was performed. The surgeon cut open her skull and successfully drained all 4 of the cysts. He then did something to connect them all together and then to the main drainage ventricle that we all have in our brains. Fortunately she did NOT have to have a shunt and the cysts have NEVER come back – knock on wood. Spent 3 weeks in hospital 4/25-5/15/98.

5/10/98 – Spent my first Mother’s Day with her in the hospital.

6/1998 – After seeing a developmental doctor at USF developmental center, she was referred to a neuro opthamologist bc the doctor knew of some syndromes that affect vision and Dakotah wasn’t tracking things as she should’ve been doing at that age.

6/1998 – The neuro opthamologist found colobomas (holes) in her retina and on her optic nerve and diagnosed her with Aicardi Syndrome. My journey with her began.

7/1998 – Dakotah started attending UCP (United Cerebral Palsy) and receiving speech, physical, and occupational therapy.

8/1998 - Took Dakotah to Canada to see dr. and get rx for seizure drug that was not FDA approved at that time. That was a nightmare once I got back bc had to get meds through Mexico and then they wouldn't arrive on time bc of time through customs. Quickly stopped that.

11/6/98 - Modified Adnoidectomy and first set of ear tubes

1/1999 – Started going to Shriner’s Hospital – she was diagnosed with scoliosis – small curve at the time. Since that time, it has progressed to the 54 degree curve that she has now that is the reason she has to have spine surgery in November to have the rods placed in her back.


2/14-2/21/2000 – Dakotah wouldn’t suck on her bottle or eat anything – she wasn’t able to control her tongue/use it as she was supposed to so she had her feeding tube put in. Also had upper respiratory infection.

6/5-6/8/00 Attempted to try Ketogenic diet for seizure control - ended up not working

11/11/2000 – She was having a lot of reflux so she has a Nissen Fundoplication done. It is a surgery in which they cut open her chest and tied her esophagus into a knot just above her stomach. It allows for her saliva to be able to go down, but nothing can come back up and out. Spent a week in hospital.

2/2001 – Dakotah turned 3 yrs old and life changed in terms of funding – No more part C funding which paid for pretty much anything I needed for her – including therapies and respite. She was now placed on the MedWaiver waiting list (Medicaid that isn’t income based). 9 YEARS LATER SHE IS STILL ON THAT WAITING LIST!!!!!

8/2001 – She started public school. No more speech therapy bc she needed/needs oral motor therapy and the school systems view that as “medical”, not educational. No more occupational therapy bc they
said that she wasn’t “cognitive” enough to receive that therapy. Physical therapy was 30 min per week. Mind you she had been receiving all three therapies for 30 min 3x per week. *She currently receives NO therapy bc regular health insurances will not pay for ongoing therapy like she needs and school said that she had reached her maximum potential in terms of gross motor skills.

8/2004 – I had to totally change careers from Juvenile Probation to being a teacher because I could not find a daycare that would take her for after-school care. *Side note – I LOVE my job as a teacher – I teach
students like my daughter w/moderate to severe/profound disabilities.

2005 - 2nd sets of ear tubes and another adnoidectomy

7/2007 – Dakotah had tendon splat surgery on her right foot because it was starting to twist outward. The surgery was a temporary success. Her foot is not twisting out again. She has hard plastic foot orthotics that she has to wear. One week in the hospital.

2007 3rd set of ear tubes

5/2008 – I was nominated and won “Florida’s Female Caregiver of the Year” by the Florida Respite Coalition. Just wanted you to know that bc I am so proud of that!!!

10/2009 – Salivary Gland Ablation procedure at Nationwide Children’s Hospital in Columbus, OH. (The doctor is the only one in the county that performs this procedure.) After first ½ of procedure, her airway swelled shut, they had to put in a nasal trumpet so that she could breath. She was in ICU and developed pneumonia. She ended up spending 8 days in the hospital. The day she was released from the hospital, we were at a friend’s house bc she was taking us to the airport the next morning. That’s when I fell down her basement stairs and broke my ankle. I had to have surgery once I got back to Florida. These 2 events are what started the downward spiral of my financial life. I was out of work w/o pay bc I had no sick leave left and teachers can’t donate sick leave to other teachers.

12/2009 – We went back to Ohio for the 2nd half of the procedure. This time it went well (Thank God!!!).

5/2010 – Everything had snowballed by this point and we ended up homeless (living with a friend at least).

7/2010 – Continued not paying all credit cards and any medical bills so that we could move into our own place. Luckily a friend had her house for rent for $600.

8/2010 – Got the news that Dakotah would have to have surgery on 11/16 to have titanium rods placed on each side of her spine with a wire weaving through each vertebra to hold the rods to her spine. She will have an incision from her neck to her tailbone (breaks my heart to think of this) and the wires will be anchored to her tailbone. She will be in Arnold Palmer Hospital in Orlando for a minimum of 5 days and then home from school until we go back in January 2011.

Shower time

I have put off Dakotah's shower long enough today - now it's time. I have so much reading to do for my doctorate class that I hate stopping, but I have to do this for her. These are the days/times when I wish I could say, "Dakotah, it's time for you to take your shower." Instead, I have to carry her from her room into my bathroom - avoiding catching her arms or head on the door frame (the house I'm renting is an older one and the bathroom doors are so small). Then I put her on her shower chair - thank goodness for the stand so I don't have to bend over. Let me tell you, she HATES getting a shower. I have to shave under her arms and she really doesn't like that! The shower stall is so narrow and she frogs her legs out so that she usually ends up with bruises on her knees. My dream is to one day have a bathroom that is nothing but tile that is essentially a huge shower with just a sink in it and a fold-up (on the wall) changing table. Then I could undress/dress her in there. I would be able to get to all sides of her instead of standing on the lip of the shower and essentially soaking the bathroom rugs. But, I know that's a BIG dream and one that won't come true anytime soon so we make due with what we have. I'm just grateful that her shower chair fits the width of the shower!!!!!

Well, sorry to vent.....please know that I'm not complaining, just venting!

Jen

So sad today

I'm so sad today. I had to pawn our big screen t.v. a couple of months ago in order to pay my wheelchair van payment and I am not able to get it back. Dakotah loved watching the big t.v. She has so few things in life that she can do and watching t.v. is one of them. Hopefully one day I will be able to buy another one.

I am also dealing with a family member that is actually questioning the surgery for Dakotah. "Is it a matter of life and death?" this person asked. Um, am I supposed to wait for it to be a matter of life and death? How about the quality of her life????? That is what is truly important! She can now only sit in her wheelchair for about 30 min before she begins to get uncomfortable & in pain because of the curving and twisting of her spine. Does this person really think I want to see my daughter go through this difficult of a surgery just for the heck of it???? Not to mention - I am NOT looking forward to having no pay in December and risking being homeless again. Just did that in May 2010 and REALLY, REALLY don't want to do it again. I just don't understand people sometimes.

Dollar 4 Dakotah

I was able to set up a paypal account for any donations that anyone would like to make - Please trust that I did this because someone asked how they could make a donation. I do not expect people to donate money. That is NOT the purpose of this blog. This blog is share with others what it is like raising a child with a disability. Also at this current time in our life, I am hoping that Ellen Degeneres will somehow read the entries and consider us for a family she helps! Thank you all for your support!!! XO

Oh, see, I almost forgot to give you the email address that you can use for paypal - dollar4dakotah@gmail.com

Just when we were getting back on our feet....

Well, just when things have been improving, I get hit with a big blow. Dakotah's scoliosis has worsened and she will be having spine surgery on 11/16 at Arnold Palmer Hospital in Orlando, FL. First and foremost my heart breaks for my precious little girl. She will endure so much pain from this surgery and she will have no way of telling me when it hurts. She will be in the hospital for at least 5 days and then home with constant monitoring. She can move just enough that she will have to be watched to keep her still and straight until the rods fuse to her spine. The surgeon will be placing 2 titanium rods in her back and will be weaving a wire through each vertebra to attach them to her spine. She will have to lay on her back, very still for several weeks for the fusion to take place. She can do so little that the simple gesture of her rubbing her eyes or scratching her head is a HUGE accomplishment. Please pray with me that she does not lose the ability to do that. She also knows her name and smiles when she hears my voice - it will crush my heart and soul if I lose that precious part of my life. I will probably never hear her say "mommy", but that smile of hers tells me she knows who I am.

On top of worrying about her, my insurance copay will be $1250 for the stay. I teach and will be out of work from 11/16 until January. This will be 17 days of leave w/o pay for me - I will not receive any paychecks during the entire month of December and won't even make enough to cover my insurance premiums. Luckily the school district won't drop me, they will just deduct it from my checks in January (thus reducing any money I will make in January).

If you have read any of my previous blog entries, you have seen that I went through something similar last year only this one will be worse. I have inquired about our sick leave bank, but according to Florida state laws, sick leave bank time cannot be used for anyone other than the actual employee (stupid law if you ask me). I am so worried about how I am going to make it. Because I work, my daughter does NOT qualify for ANY type of assistance. The one program that she does qualify for "MedWaiver" has a waiting list and she's been on that waiting list for 9 years now. We actually go to Tallahassee every March to meet with senators and legislators about this horrible situation for our persons with disabilities in Florida.

I do not know how I will pay my essential bills. I am still trying to get caught up on my wheelchair van payment. It's 9/8 and I still owe the payment from 7/30 and 8/30. The credit union that has my loan has been WONDERFUL in working with me but I don't know how much longer they will do so. I have credit cards calling me and hospital collections bills piling up. It's gotten to where I don't even open them, I just put them in a pile on my kitchen table.

I have a wonderful 18 year old son that has gone off to college this fall. I have to help him as best as I can. I am all that he has.

I know that everything happens for a reason and God would never give me more than I can handle, but it is hard sometimes. I keep going and keep trying because I want to be a good example for my son. I truly believe that I was chosen to be Dakotah's mom and I NEVER begrudge her or wish I didn't have her. In fact, I couldn't imagine my life without her.

Some have asked me, "What will you do for Christmas?" My response to them is this, "All I want for Christmas is my daughter to make it through this surgery and have a good recovery." That is my Christmas wish this year.

Thank you for being a part of this journey by reading these posts. XOXO

If you are on twitter, please help me by messaging @theellenshow. Also, here is a link if you don't mind taking the time to fill out the entry - please feel free to copy/paste anything from my blog. http://ellen.warnerbros.com/show/respond/?PlugID=432

Jen

I'm tired today

Today is definitely one of those days I wish Dakotah received some services so I could have a respite care provider or nurse come and help me take care of her. Didn't sleep well last night due to tooth ache...so was exhausted this a.m. I didn't feel like even getting up, but I don't have any leave and definitely need every penny of my paycheck right now so I can attempt to get things caught up to allow us to get a place of our own.

Anyway, I still got up, fixed her breakfast (can of prescription formula/water) and fed it to her thru her feeding tube. Gave her her meds. Changed her diaper and got her dressed. This part (the dressing) is getting so much harder as she gets bigger. She's 72 lbs. of deadweight and is 4'7" so she'll be as tall as me soon (I'm only 5'5"). Anyway, then I pick her up (not so good for the back) and carry her out to her wheelchair in the other room. You see, our friends' home (where we are living so we aren't in a shelter or on the streets) is an older house and the halls are very narrow. Because of this, I can't bring her wheelchair into our room. Truthfully, there wouldn't be much room for it in here anyway. Once I get her all strapped down, we head out to the van, lower the ramp, and load up. There are four straps that I use to strap her down to the van's floor. This is for safety so her chair doesn't slide around.

Off we go to repeat the process in reverse once we arrive at her school. Then repeat in forward and reverse again when I pick her up. Luckily today it was not raining like it was yesterday. You should have seen us - I was pushing her up the ramp with one hand while holding an umbrella with the other. Dakotah may be very low cognitively but she does know this: she doesn't like the rain, wind, having her hair done, her face washed, or her teeth brushed! HAHA. I am so grateful that she has an opinion about things.

Well, I have to get to work on Aicardi Syndrome Family Conference things. Thank you for reading!

Ellen Yay May/Tough times entry

Hi everyone! I hope if you are reading this that you will forward the link to this post to all your friends/followers and then help me by tweeting Ellen Degeneres, messaging her on facebook, or doing entries on her show's webpage. I really need help! Please read...

Ellen-I'm not down because I have a daughter w/disabilities or that I will probably never hear her say I love you mom or feel her arms hugging me. I’m not upset that I have to change a 12 yr old’s diaper or watch her have daily seizures (even though it breaks my heart). I feel blessed that I was chosen to be her mom. I’m even trying to find the “reason” behind my current situation, but it gets hard. I’m a single mom of 2, was just evicted & about to lose my wheelchair ramp van. We are living in 1 bedroom of someone else's home w/all daughter's supplies. Can lose van bc that’s how I get her to dr. appts/school. I teach students w/disabilities & am actually nominated for “Special Education Teacher” of the yr for my county. Little does everyone know that behind the smile/hard work is a breaking heart bc I can’t provide for my kids like I should. We do NOT qualify for ANY assistance (even my daughter). No child support. Credit cards maxed/behind ($5000). Got this way bc she was in ICU, then I broke ankle/needed surgery/cast-ALL time off w/o pay. Have sr. year expenses for my son also. I’m working on my doctorate to make more money & can't work 2nd job bc have no care for her. I'm really trying to "dance" & see the light at the end of what seems to be an eternal tunnel, but it's getting harder & harder. I’m actually Thank you for helping me laugh everyday & appreciate that I’m not the only one in this kind of situation. I really need you Ellen!

Ah, diaper in the van

Well, let me first say that changing a stinky diaper of a 12 year old is NOT a fun thing - but something I don't mind. A girl's gotta do what a girl's gotta do (applying to both Dakotah and I-lol). Anyway, where it gets real fun (NOT) is when I have to change her is the backseat of the van. I have a mini-van with lowered floors so at least I have the head room to lift her out of her chair and lay her on the seat, but let me tell you - Miss Priss is 4'7" now and does NOT fit length-wise in the seat anymore and she's too heavy to lay on the floor of the van. Sure, I can get her down there, but my back just can't get her back up (safely anyway). Today's diaper change was even better than usual because guess what?!?!?!?!?! No wipes in the van. Soooo, I had to use extra diapers (wasting what I already have to fight to get or have to buy myself). I managed to get her clean, get her back in her chair and then into dinner at a restaurant. She was very happy and I got to enjoy my dinner!!!

Even doing hair is an ordeal

Well, Miss Dakotah has the curliest hair ever - I put a texture relaxer in it this morning. For the typical developing child, this would not be something to blog about, but for us, it is. Since Dakotah has very poor head control, I had to carefully plan how I was going to do this w/o getting this product on her skin or in her eyes. I geniusly figured out how to put the bathchair in the bathroom (not actually in the tub) where the head portion would be over the tub. I got her situated and strapped - thank goodness for straps bc w/o them, she would've wriggled off the chair. Of course the directions say, "Detangle the hair first". Well, let me tell you, detanging hair is one of Dakotah's LEAST favorite things to do. It ranks right up there with toothbrushing.

I got it detangled and started applying this cream - first time user so I was silently praying that it would work and that all her hair wouldn't fall out. Mommy's already been there and done that (had to wear a wig and all) so I didn't want that for her. My back was killing me at this point because I had to bend over to apply, rinse, and then shampoo her hair.

Once I got her back to the bed, I had to sit her up - again, another strategic event because I had to sit behind her, positioning my legs and knees just right behind her so she wouldn't fall back, but not too much or she would have fallen forward. (See, so even if your daughters whine about having their hair done, at least they are sitting up unassisted - lol). I have to support AND I still get the whining.

Anyway, it worked, it relaxed it so well but left some of the curl. It's so much easier to comb through and put into her pig tails. I finally decided to cut the back portion at the nape of her neck. It doesn't grow well bc of where her headrest is on her wheelchair so it just looks so much better being short.

After about an hour - yes, an hour - her hair is done and looking quite cute. I'll take pics later when I get her up in her wheelchair.

Tomorrow will another ordeal.....bathtime....... :-)

Pretty uneventful day, but that's a good thing

Well, today was a good day. No calls from the school nurse that Dakotah had a seizure. Got her to school on time. She was watching Monsters, Inc. at Extended Day when I picked her up. Had to pick up prescription seizure meds today. She's snoring now (it's 9:30 p.m.). Gotta get that Breathe-right strip on her - they really work. I'm watching Top Model Finale from last night.

this sharing a room is really hard. I'm a late night person so I feel so bad for keeping the t.v./computer on so late. But, that's what happens when you don't have your own place and are living with friends (for that I am so grateful).

Tomorrow is Friday - hurray! We get to sleep in Saturday and trust me, Miss Dakotah loves to sleep in!

Noisy Progress

So, I got some good news today from Dakotah's teacher. She is being much more vocal now. She has found a new pitch and volume level in her voice and really, really likes to hear herself. She started doing it for me last week and now it's carried over to school. It's funny because her teacher asked me this morning if I thought she was having a new kind of seizure - I said, "No, I think she just likes to hear herself." It's so funny because she really screams but it is a good scream and it's progress. It's noisy progress (and I have to turn up the volume on the t.v. now) but it's PROGRESS!!!!

Mornings

My morning routine is a little different than most moms - even if they are single moms. I have to feed & administer seizure meds to my daughter via a feeding tube, change her diaper, dress her, and put on her AFOs (foot braces). She cannot assist me so I am turning and lifting 72 lbs. all by myself. Once she's ready, I lift her to put her in her wheelchair.

Right now life is even more different for us because we do not have our own place. We are living in a bedroom at a friend's house. I am so grateful to them, but it's hard. I am a late night person and the t.v. and computer light sometimes wake her up. Sometimes when she wakes up she'll have a seizure - not fun - and then I feel really bad.

Well, have to get ready to go to work - I teach middle school students with learning disabilities. I will be back tonight to explain why we currently/temporarily don't have a place of our own.

My daughter

Many people say, "Oh, I'm so sorry!" when they meet my daughter and me. I understand why they offer their sympathy or maybe empathy but I don't agree. You see, my daughter was born with a rare syndrome, Aicardi Syndrome. Her life expectancy is unknown. She is 12 years old now and is still in diapers, cannot roll over or sit up, has a feeding tube and daily seizures. She is on daily medications to help control her seizures.

When she was born I thought I had a healthy baby. Little did I know that in 2 months from her birthdate, my world would be rocked. She started having the seizures when she was 2 mos old. After an MRI, they found 4 cysts in her brain. They successfully drained them and I spent my first Mother's Day with her in the ICU @ St. Pete Children's Hospital. Two months later, my world was rocked even harder when she was diagnosed with Aicardi Syndrome. The life expectancy of girls with this syndrome is unknown and many girls to make live past their teens. She is already beating the odds.

I decided long, long ago when she a little baby that there was no point in me sitting around feeling sorry for myself. Sure, I was sad that there was the possibility (now probability) that I wouldn't have mom/daughter talks with her like other moms and daughters do. She's 12 now and instead of buying her make-up or nail polish, I'm buying bibs and diapers. But guess what? I'm glad that I'm buying those things bc that means she still here with me. Don't get me wrong, I have my days when I get down. I see other little girls that are younger than Dakotah doing way more than she can. I see them calling their mom "Mommy" (this I think is one of the hardest things).

I will tell you now that I do not view her as burden, but rather a BLESSING. She has taught me so much about appreciating the small things in life. She has affected my life in a positive way and for that I am grateful. She has given her older brother an appreciation for all the athletic things he can do - the fact he can run up and down a soccer field.

I am starting this blog in hopes of journaling my journal as a single mom to a child with a disability. Life is always easy and we don't always get what we want, but it's what we do with what we have been given that makes all the difference in the world.