April 7th, 2016
Dani's surgery went well. It was 2 weeks ago. She has a pretty pink cast! Thankfully, the week after surgery was Spring Break and she got to relax in bed for a week. Dani just had an x-ray of her cast and the bone is healing well. She will be in a cast for 4 more weeks. Then she will have 2 weeks of in-hospital physical therapy at the Rehabilitation Institute of Chicago. Thank you everyone for the prayers!
Please pray for Dani having surgery Thursday the 24th!!!!
We saw Dr. Dias on March 1st. He recommended that Dani have the tibial derotational osteotomy, but not the plates on the sides of the knee. Please pray for Danielle to have a successful and uncomplicated surgery!!!
We also resolved a couple of other issues. First, Dani's strange vision issue from October seems to have been caused by the UTI (which was my suspicion). She had another vision issue recently related to a double ear infection. The pediatrician said that sometimes people will have vision issues with severe infections. Second, Dani's double vision is under control. It turns out that her left eye has become her dominant eye and taken over for her to function. I was happy when she finally told me how she able to read and walk for the past three years, because I had asked her so many times. I am glad that we don't have to move forward on prism glasses or surgery! Third, Dani's mystery pain seems to be muscle related. We have done every test imaginable with no cause. Through process of elimination, the consensus seems to be a muscle.
Samantha, our artist, asked if she could make a painting for the annual Mulliganeers St. Patrick's Day fundraiser. Of course, what a wonderful thought! Samantha titled her work "Unconditional". It sold at auction for $50. Congratulations Samantha and the Mulliganeers for a successful night!
Dani had her gait analysis on the 4th at Shriner's Hospital. We have to wait three weeks for the results. Once we have the results, we will bring them to Dr. Dias at Lurie Children's Hospital for his opinion. The Idea is to have tow Ortho surgeons look at the analysis and give their recommendations. The Shriner's doctor recommended the tibial derotational osteotomy (breaking the tibia and reseting). He also recommended plates be placed on the sides of her knee for extra support. Now we go to Dr. Dias.
February wasn't all doctors. Dani had a Family Fun Night at her school. We visited Ava in the Rehab Institute of Chicago. She is having therapy following her surgery. One of Ava's procedures is the same tibial surgery. Dani got to look at her scar. Then Danielle and Dad went to the Girls Scouts annual Daddy/Daughter dance. What fun!!
Family Fun Night Visiting Ave at RIC
Daddy Daughter Dance
We returned from Florida with good results. Przemek had Danielle lifting her left knee in 2 days. She was back to independent walking in no time. By the end of the 2 1/2 weeks Danielle was almost as strong as when school began in August. Dani is set for a gait analysis at Shriner's Hospital on February 4th. We have waited since the beginning of June for a 3D gait analysis which our insurance continually denied. All three of the Orthopedic Surgeon's appeals were denied! Shriner's Hospital agreed to covered the cost of the analysis!! Thank you Shriner's!!! What a waste of 8 months waiting for approval.
Our family wants to thank Przemek for all of his wonderful work with Danielle. We also thank Jeff's sister and her family for welcoming us into their home once again. Thank you Bethany, Kevin, Amelia and Allison!! Dani loves to hang out with her cousins. Luckily, we were in town for Grammy Barb's 70th Birthday!! How nice it was to visit with her and Vic!! The carrot cake was awesome!!
Dani & Allie Dani & Amelia Dani & Aunt Bethany
Dani & Uncle Kevin Playing Hedbanz Game I think Dani's winning
Happy 70th!! Dani & Grammy Barb Dani working hard with Przemek
January 8, 2016
Dani and I leave this weekend for Florida. She will have 2 1/2 weeks of intensive physical therapy with Przemek. We hope that she can get back the strength that she had at the beginning of the school year when she was walking independently at school. Upon our return from Florida, Danielle will have a gait analysis to help determine why her left knee keeps buckling. The knee giving way began about 3 years ago and has progressively gotten worse. We are hoping that the knee issue is not due to an external tibial torsion which would require breaking and resetting her tibia in order to correct. Please pray that Dani has a productive therapy session and gains a lot of strength!!
Thanks for checking on Dani! Cindy & Jeff
We started out December with the annual Spina Bifida Christmas party. It is always a fun time with Santa, friends, and good food. Danielle worked two hours a day over Christmas vacation to get as strong as possible. The week before Christmas she had another vision issue. So, on Christmas Eve day we had to visit an Ophthalmologist (Eye Surgeon) at Lurie Children's Hospital for them to check her eyes again. They said that there was no swelling on the brain, didn't think that vision therapy was going to work, and recommended getting prisms in her eyeglasses. If the prisms don't work, then she may need eye surgery. All medical issues aside, we had a wonderful holiday!! The family stayed home as much as possible to relax.
Dani began seeing an optometrist regarding her double vision. This doctor was attempting to discover if Dani's eyes could be corrected by vision therapy. We had three appointments and she is still trying to figure out Dani's issues. Of course Dani can't be a simple case.
Mid month we visited another doctor to try and discover the cause of an internal pain that Dani has had for 2 years. We saw every doctor imaginable in the summer of 2014 and could not find a cause. This doctor finally ordered an abdominal sonogram to check her organs and the test came back with no issues. We're still in the dark. Then she had an appointment with her Endocrinologist and her bone age is still ahead of her real age. Thank goodness for Thanksgiving break and a little rest.
Danielle and Samantha enjoyed an early snow on November 29th and made their first snowman all by themselves.
The month began great with the village Halloween parade that Dani participated in. She went to Dollinger Farms with Girl Scouts and got to pick out a pumpkin. She had a Fall Fest at school.
Dani is "Evie" the Evil Queen's daughter Dollinger Pumpkin Farm
However, luck is not always on our side. Dani began her strengthening exercises after being off her feet when suddenly she contracted a bad UTI. This infection was so bad that her vision went awry. Dani's depth perception was totally off. Vision issues can be a sign of a shunt malfunction so we had to go to the emergency room to have and MRI of her brain and an xray of her abdomen to make sure that her shunt was functioning properly...it is!! The vision problem persisted for 10 days. Once the doctors prescribed a stronger medication, the UTI and her vision cleared up. We saw a whole litany of doctors during this time. Dani was non weight bearing another 3 weeks over the course of the illnesss. Also, while going through this issue we discovered that Dani has had double vision for the past 3 years. I don't know how she functions on a daily basis. Now we have another issue to address. Dani is such a loving and laid back personality that she never complains. I am trying to get across to her that she has to let us know if something is wrong or hurts. She is such a gentle soul!
Well, we have good news and bad news. The good news is that Danielle has been doing so well with her independent walking that she began walking in school. Each day she would walk with me from the bathroom to the lunchroom and was doing wonderful. She had a great pace and very few falls. Also, Dani began walking from her class to other classrooms nearby for music, art, and the library.
Then.... Dani and I were sick Labor Day week. She was off of her feet this week. On Sunday night Dani was washing her hands and her left knee gave way and she was on the ground. It turns out that Dani bruised the front and back of her ankle. Yes, she did have on her AFO's (leg braces) when the accident happened. As a result, Dani was totally off of her feet for an additional 2 weeks. Unfortunately, Dani regresses quickly when she is off of her feet. It will take a month or two to get back the strength and endurance that she had at the start of school. Dani is a hard worker and she is so excited about walking at school, that I know she will be back walking soon.
What's coming up? We have 2 weeks booked with Przemek in Florida in January. I want to get Danielle as strong as possible before our trip and then see how much further he can take her.
After Danielle's adenoid surgery in June, her snoring was really bad for two weeks post surgery. Then the snoring stopped. She only snores if she is not feeling well with a cold. Samantha is very happy that her sister no longer snores.
Our family treat this summer was a trip to the Bristol Renaissance Faire. We had a fun time and there are so many activities for the kids. Danielle made it to the top of the climbing wall and rang the bell (with a little help).
The first day of school was August 19th. Danielle is in 4th grade already. Samantha is in 6th grade. I can't believe how quickly the time has gone.
Dani - 4th Grade Melanie (Best Friend) & Dani
On July 11th, Danielle "WON" as a Little Miss Pageant Queen. Her official title is the 2015 National "Miss You Can Do It" Little Miss Pageant Queen. The trophy is as tall as her!! The pageant was held in Peoria, Illinois. It is a pageant for special needs girls; and people come from around the country to participate. The girls compete in Formal Wear, Casual Wear, Private Interview, and On Stage Question. Mom did her hair and Dani's makeup was done by a makeup artist at the pageant. Dani's escort, and good luck charm, was Drew. We are so proud of Danielle, she did a great job!!
Formal Wear Casual Wear
Abbey Curran- Pageant Founder Drew- Dani's Escort Dani waiting for Private Interview Makeup
Later in the month, Danielle threw out the first pitch at a Joliet Slammers game. The Miracle League baseball teams play on a field behind the Slammers field. The Miracle League set up with the Slammers to have the Miracle League players throw out first pitches at their home games. It was a fun night with fireworks at the end of the game. We all had a blast!!
Summer is finally here!! Danielle is busy with Ava playing baseball on the Braves team for the Miracle League. The girls have so much fun!!
Dani Ava and Dani
Danielle had 2 surgeries in June. The first surgery removed her adenoids to help relieve her snoring. The doctor said that she may always have some snoring due to her Arnold Chiari II Malfornation.
(ACMII is where the brain stem sits down into the spinal canal and impedes the flow of spinal fluid between the brain and the spinal cord. Thus, the hydrocephalus and the need for a shunt). The second surgery was to implant a device to suppress early puberty. It is a time release implant and should last for a year. Dani came through both operations with flying colors.
May 20, 2015
"WAY TO GO DANI"
This is why going to Florida to see Przemek is so important!! Just look at the results!! Thank you to everyone supporting Danielle, you are helping a little girl to walk!!
Jeff and I had Dani's IEP meeting with the school today and we talked about her walking independently at school between some of her classes next year. This is so exciting!!
April 14, 2015
I took Dani to Lurie Children's Hospital today to see the Ear, Nose, & Throat doctor and the doctor said that Dani needs surgery. Dani snores and I just found out she also has sleep apnea. Last month Dani did a sleep study and it confirmed her snoring and apnea. The ENT thinks that this situation is caused by Dani's Chiari 2 Malformation. The doctor will take out her adenoid, clip her epiglottis, and check her tonsils while in surgery. It will be nice to stop the sleep apnea and snoring, but surgery is never fun. This only means that we will need to raise more funds to cover the surgery because insurance covers at 80%. The sleep study itself was $5,000.
April 9, 2015
Time is really running short until Danielle and I depart for 2 weeks of intensive therapy in Florida. We leave on May 2nd, and have 2 weeks to raise the remaining $2,000 for the trip. Our total goal right now is $4,000 ($2,000 for the trip and $2,000 for other medical expenses not covered by insurance for the rest of the year).
Danielle will have therapy for 4 hours a day, 5 days a week, for 2 weeks. The last time that we went for this therapy the therapist transitioned Dani from forearm crutches to straight canes and the beginning of independent walking. It was absolutely AMAZING the progress that he made with her in such a short time. We are so very excited to see the progress that Dani will make in this therapy session. Donations for Danielle's treatment are much appreciated!! We thank all of our family and friends for your continued support!! Danielle's is doing as well as she is today as a direct result of your support!!
Please make checks payable to "Benefit for Danielle Smith" and mail to:
Benefit for Danielle Smith
P.O. Box 525
Minooka, IL 60447
Danielle is doing wonderful!! She is walking twice as far as she was this time last year. She is walking 10 lengths at 25 feet a length. Also, she is turning around without holding onto anything. WE ARE SO PROUD!! Below is an updated video of Danielle walking and turning.
March was a busy month. We went to the Mulliganeer's St. Patrick's Day Fundraiser. Danielle had the "Time of her life - her quote. The band had her on stage to sing and she loves to dance. The next weekend was the Daddy Daughter Dance for Girl Scouts. The Next Step Kids SCI Foundation granted us funds to pay for our flight and rental car for our Florida trip. THANK YOU ONCE AGAIN!!!!
Mulliganeer's St. Pat's Fundraiser Daddy Daughter Dance
Danielle is getting stronger and steadier on her feet. She is walking longer distances and we had to move her to another part of the basement for her to walk longer stretches at a time. Danielle placed 5th out of the entire 3rd Grade in the school's first Spelling Bee. We are going back to Florida to see Przemek for another session of intensive physical therapy. This time we will go for 2 weeks. We have booked the first 2 weeks of May. It's time for more FUNDRAISING! A SPECIAL THANKS AGAIN TO MR. RAUL GOMEZ FOR HIS GENEROUS DONATION TO HELP MAKE THIS TRIP POSSIBLE!!!
Danielle has an exciting new piece of equipment, the igallop. The igallop is equipment that simulates horseback riding. When Dani took therapeutic horseback riding the facility had an igallop. It is to help strengthen the core muscles which is where Dani really needs strengthening. We were lucky to find one used in the northern suburbs, they are heavy and would be expensive to ship.
Dani's igallop video:
December 25, 2014
Danielle has been using her knee brace at school and doing well. She has regained her strength and is active in morning exercises and independent walking at home.
We also attended the annual Illinois Spina Bifida Association Christmas Party!! It is always great to see old friends and make new ones!
Dani's 1st SBA Party (3 Months Old) Dani's 3rd SBA Party
November 16, 2014
Danielle had a recent set back. She had a reaction to a shot she received in her leg. The shot was in her bad left leg with the knee issues. Her leg swelled, had pain, developed a rash that was hot to the touch, headaches, cold and shivering, then 102 fever. The shot was last week on Monday, Tuesday and Wednesday she went to school in her wheelchair, Thursday and Friday she stayed home. Thankfully, by Sunday she was all better. Now we have get back into the exercises after being off of her feet for a week. It's surprising how quickly she begins to regress when she is off of her feet.
The first knee brace that Dani was casted for can not be worn with Dani's leg braces. We recently tried a second knee brace made of softer material, but it was not strong enough to keep her knee from caving inward. Then the Orthotist connected the first knee brace to Dani's old set of leg braces (which were cut down to ankle height) with aluminum rods. This should help keep her knee and foot in alignment and prevent the knee from caving in. It seems to work well only the leg brace is a little tight and will require yet another trip to have it widened. Since April, we have had 15 trips to the Orthotist for castings and adjustments to the leg and knee braces.
Looking forward, we would like to have Danielle take another intensive physical therapy session with Przemek in Florida. He brought her so far in such a short time. I wish that he could just live at our house for 6 months, then she'd be running. I was told that an actor paid for one of his employees' children to have intensive therapy for 6 months straight and had unbelievable improvements. Oh... to win the lottery.
Dani Walking Video
Danielle with the new member of our family, Chewbacca "Chewy"
October 30, 2014
Danielle received all A's and one B (91% which in my book is an 'A') on her first report card. Our schools have an accelerated grading system, which I dislike. Dani loves her friends and her teacher. She has built up her endurance and is walking well with her canes. Even though Dani is doing spectacular, the principal at the school loves to give us grief. The last two years when Dani used her forearm crutches, the principal wanted her to use her walker. This year it's the same again. We even had a two page letter from Dani's physical therapist as to why it is so important for Danielle to use her canes. If Dani uses a walker instead of canes, then she will be regressing instead of progressing. Jeff and I totally feel harassed by the school at this point, and we told them so. It is a shame that they are not supportive. Luckily, all of Danielle's doctors have been supportive in all that we do including the stem cells.
Halloween Parade for Girl Scouts Dani as Princess Anna Samantha as Princess Elsa
September 30, 2014
Danielle has an awesome teacher and knows some of the kids in her class. She is using her straight canes at school this year. When using the canes Dani can not lean on the canes and therefore has full bearing on her legs. The weight on her legs helps her bones to grow so she won't be too short in stature as is common with Spina Bifida. It will take her some time to build up her endurance after summer break. Dani's classroom is at one end of the school and Art, Music, Physical Therapy and the lunch room are on the total opposite end of the school. It usually takes a couple months for her to build up her stamina to walk the halls several times a day.
Danielle seems to be back to the same strength that she had after the intensive physical therapy in Florida last year. I can just imagine where she would be now if she didn't have her injuries last Winter (foot sprain) and Spring (knee). Two steps forward, one step back, as long as we keep moving forward!! As a result of Dani doing so well, she is not allowed to use her canes at home anymore, and has to walk independently.
"8" Years Old
August 30, 2014
School began too quickly on August 19th. This summer was so crazy busy that we were only able to stay home 3 days without an appointment. The GOOD news is that Danielle is walking really well. She is turning her feet straight now without even thinking about it. She has become much stronger over the summer. The downside is that she is still having issues with her knee and we still don't have a brace that she was casted for in April.
First Day of School- 3rd Grade
July 30, 2014
Danielle is doing well in therapy. The hours for Dani's 3rd week of intensive therapy was split into two days a week over 3 weeks. In addition to the therapy, Dani has had a couple of issues that have us running to countless doctors. We have been to every specialist possible (Orthopedic, Urologist, Neurologist, Gynecologist, Pediatrician, an X-ray and an MRI). She has a second issue, for which we have seen multiple doctors with scans and blood tests. On top of this, we have had many trips to the Orthotist for adjustments to the leg braces and an attempt to get her a knee brace. It is an extremely busy summer to say the least.
Danielle is almost "8" with 8 pairs of leg braces
Thanks to the "Starlight Foundation", our family along with the Maurella family were invited to watch the Bears practice in Bourbonnais this summer.
Danielle & Samantha Ava & Danielle
June 30, 2014
I was able to strengthen Danielle's knee enough for her to begin the intensive therapy program with Dawn. Dani has been working very hard on her gait, trying to keep her feet straight when she walks and bringing her foot from behind to the front in one step. She is doing well. Her therapy is 5 hours a day, 4 days a week.
Dani began the month with a Fishing Derby. She caught the second biggest fish and had a fun day with Dad. Dani tried to hold the fish for a photo, but it moved too much. It was 17 inches long.
We ended the month with a visit to the Abilities Expo with Christy and Ava Maurella. The girls had a great time meeting other people including the Miss Wheelchair from Michigan (we didn't even know there was such an event). They learned how to pop wheelies in their wheelchairs (to go up curbs, of course) and danced with wheelchair dancers.
May 14, 2014
Unfortunately, Dani's knee issues keep coming back. Every time I think that it is healed, it starts hurting again. The Orthopedic doctor took and x-ray and her bones are fine. Last week she was pain free for 5 days and then ran 10 lengths in gym class and reinjured the knee again. She will not be participating in gym class involving her legs for the remainder of the year, per my request.
On the bright side.......We received two wonderful donations. One from the Future Farmers of American from North Hardin High School in Kentucky where my lovely niece Tatiana is a student. The FFA members sold carnations for Valentine's Day and donated the proceeds to Danielle. Thank you so much!!!!
Secondly, Mr. Raul Gomez (one of Danielle's angels on earth) make a huge donation....again. We can not express how thankful we are to have you in our lives!!! Thanks to Mr. Gomez, Danielle will be participating in a three week intensive physical therapy session in June. Luckily, we were able to get into the only program around the area. Otherwise, we would have gone back to Florida; I already had a session reserved for July. It will be nice to stay close to home. I like the therapist at the Mokena facility, she has her doctorate in physical therapy and know her stuff!
Also, Danielle will be getting new AFO's (leg braces) on Friday morning. She is getting a second pair of flexible braces to allow her to strengthen her ankles and calves. Theses braces will also assist her in propelling her foot forward when walking. I am so excited to see how they work out. Reality check.... two sets of braces $4,800.
Our goal now is to get Dani's knee healed and strengthened in the next 3 weeks so as to get the most benefit out of the intensive physical therapy. Please pray for a healing on Dani's knee and thank you for checking up on our little girl.
April 7, 2014
We had another little setback last month. Dani strained her knee and did not have physical therapy for a week. She has bounced back again and is doing well. This host site will not allow me to post videos anymore. I will send the video out on my list of friends and donors. If you would like a link to the video, please email me at the address above.
February 7, 2014
HAPPY NEW YEAR TO ALL!!! We hope that everyone had a wonderful holiday. We had a little set back with Dani. She sprained her foot and had to be off of her feet for 3 weeks. Yes, what terrible timing with her getting so close to independent walking.
Some good news is that Dani felt new sensations internally just before Christmas. We usually continue to see new improvements from the stem cell procedure up to 6 months post treatment.
She is now back to exercising in the morning and independent walking after school. It is taking some time to get build up to where she was before the sprain, but Dani is a trooper. She is back to using her canes at school and home. We plan to begin picking up the pace with the independent walking to build her endurance. Thank you to everyone for checking on Dani and we will keep you updated as she progresses.
Dancing with Daddy
Spina Bifida Association Christmas Party! (Dec 7th)
November 24, 2013
Dani's walking video is posted under October 31st. At this point we need to raise money to pay off $1,000 from our Florida therapy trip. Also, Dani needs special orthopedic sandals from Poland, new glasses, and deductible money for a sleep study. Donation details are under the Home Page. Thank you!!
November 15, 2013
I am remiss in not mentioning below to thank Jeff's sister Bethany, her husband Kevin, and their daughters Amelia & Allison for opening up their home to Dani and I for three weeks. We would not have been able to make the trip and would have had to continue fundraising if not for their hospitality. Additionally, a special Thank You to Jerine Wunsch for taking care of Samantha before and after school in my absence.
Dani was on cloud nine playing with her cousins every night. Amelia is 9 and Allie is 7 years old. Dani and Allie are only three months apart in age. I wish that we lived closer together because Dani and Allie got along so well together. They played Barbies and make believe, and Amelia took silly videos. It truly was a beautiful sight to see them playing together. Dani couldn't stop crying on the day that we left because she missed them all so much!
THANK YOU BETHANY, KEVIN, AMELIA, & ALLISON!!!!!!!!!!!!!!!!!!!!
October 31, 2013
We have returned from Florida with great results! This physical therapist, Przemek (pronounced Shemek), worked at both Euromed in Poland and Pediatric Fitness Center in Michigan; he has 19 years experience with intensive physical therapy. Przemek is awesome!! Dani had therapy for 4 hours a day, 5 days a week, for 3 weeks. Przemek worked on strengthening Dani's buttock, hamstring, and hip muscles. He also had her doing a lot of walking with canes and independently. By the third week Dani was walking independently 40-50 feet without falling.
Since we returned home Dani is no longer using forearm crutches. She uses two canes at school to walk and one cane at home. The canes make Dani bear her weight on her feet. She can not lean on the canes the way that she could with the crutches. We have been practicing independent walking (without canes) at home daily.
"Walking with one cane" Dani & Przemek
How do we progress from here?.....With continued daily Universal Exercise Unit exercises and independent walking, Dani will begin to walk faster and her endurance will increase. After several months of diligent work (could be 4-6 months), Dani should begin to walk on her own more consistently. Maybe we can make another trip to Florida for therapy in June over summer break. We are so excited about the future!!! THANK YOU PRZEMEK AND DONORS!!!!
Please check out Dani's video from therapy.
Dani was walking like this for 40-50 feet several times in the 3rd week!!!
September 28, 2013
We are so excited to be flying to Florida this weekend for a 3 week intensive physical therapy program. Dani's school was so nice about her taking the time off. A special thank you to NEXT STEP KIDS SCI FOUNDATION for a grant that along MR. RAUL GOMEZ'S donation, and THE MULLIGANEERS made this trip possible. Thankfully, Jeff's sister Bethany and her husband Kevin have opened up their home to us while we are in Florida.
Dani has continued to exercise in the mornings before school. I think that we have a nice strong foundation to begin this next therapy session. Last week Danielle sat up for the first time without using her hands to help her up.....she was soooooo excited!!
Danielle also turned "7" years old on September 6th. I can't believe how fast the years have gone. We post another update upon our return from Florida.
August 20, 2013
A SINCERE THANK YOU TO RAUL GOMEZ FOR YOUR MOST GENEROUS DONATION!!! We can not say thank you enough for how you have impacted Danielle's life. She would not be doing as well as she is today if not for RAUL's generosity!!!
It's been almost two months since Danielle's stem cell treatment. She is such a determined little girl that really wants to walk independently. Dani has worked her way back to a full load of physical therapy every day, weekends off. She is using her top weights on the Universal Exercise Unit. School started today and she was up at 5:30am to exercise. We practiced walking outside for two weeks to build up her endurance for distances before returning to school.
Danielle can feel hot and cold on both of her feet. She can feel all of her toes and has more sensation on her legs!! Dani can also feel around her spinal closure on her back (basically the whole bottom half of her back). Dani is walking and attempting to walk all over the house. She is so excited and doing a great job.
We are in the process of planning for Dani to take an intensive physical therapy program. It is so important to follow up the stem cell treatment with intensive PT. I hope that we can schedule it for September or October.
1st day of 2nd Grade 1st day of 4th & 2nd Grades
The Joliet Slammers baseball game with the Illinois Spina Bifida Association Group
Ava & Dani And Families
Thank you for checking in on Dani!!!
August 5, 2013
Dani received a hand bike donated by "Athletes Helping Athletes" the foundation of Road Runner Sports. She absolutely loves her new bike!! We have taken many family bike rides around our neighborhood. THANK YOU ROAD RUNNER SPORTS!!!
***Everyone buy your shoes from Road Runner, they have donated hundreds of these bikes to special needs children. The money is raised yearly by the employees of the company. There are four locations in the Chicago area including Naperville. http://www.roadrunnersports.com/
July 15, 2013
DANIELLE HAD HER STEM CELL TREATMENT!!!
HUGE THANKS TO EVERYONE THAT DONATED!!!!!!!!
Dani, Jeff, Samantha, and I flew in to San Diego. The day before her treatment we visited the Midway aircraft carrier museum. Jeff being a Navy veteran loved the museum. On Tuesday, June 25th, we were picked up by Grace and Abel Pena who drove us to the Women's and Children Hospital in Mexico. Grace and Abel are truly wonderful and caring people!
First, Dr. Trujillo, an Internist came to see Dani and check her vitals. The nurses drew blood for the lab. Shortly after this the nurses gave Dani a dose of "the Beacon Factor" developed by Abel. This is to help "home" the cells to the target area. We waited for the Beacon Factor to work it's way into Danielle's system for 3-4 hours. During this time, we were visited by Dr. Montero the Anesthesiologist and the Neurologist. The Neurologist had Dani perform tasks, such as lifting her legs and arms to test her abilities.
At 6pm. the doctors took Dani in for the spinal procedure. A small amount of fluid was removed from her spine and the donated stem cells injected. A portion of the stem cells were also administered through IV. The procedure went well. Within an hour Dani was waking up and hungry. We departed to cross the border back into the US at around 9pm. It took an hour to cross the border. Attempting to cross earlier in the day can take 3-4 hours.
Dani had a headache and backache the next day. We stayed in the hotel room and relaxed while Jeff and Samantha played in the pool. I am glad that we had a few days after the procedure for Dani to begin feeling better before we flew home.
Since we've been home Dani has been great! I have slowly added back her daily exercises. She is back on the treadmill and I am working my way up to a four week at-home intensive physical therapy program. Danielle knows that we hope this surgery will allow her to walk independently and she is so excited!! She is trying to walk everywhere herself and doesn't want help. I told her that it will take a little time to see the results. When she had her own stem cells with the same procedure it was 2 months post treatment that she took her first step and 4 months post treatment for multiple steps. We expect the same timeframe of 2-4 months to begin to see really positive results. Thank you all for helping to make this happen!!! And..... please keep the prayers coming!!
***Additionally, Dani has been given a grant from "ROAD RUNNER SPORTS" through their charity "Athletes Helping Athletes" for a new hand bike. The corporate headquarters is in San Diego and we stopped by for a visit and to say "Thank you". It really seems like an awesome place to work! All of the staff were so friendly and were in the middle of their 3 week yearly campaign to raise money for the bikes. Erin Campbell took us on a tour of the facility; she is the sweetest lady. Thank you Erin for all of your help! Dani can't wait to ride her new bike. If anyone needs shoes, please visit Road Runner Sports online or in at their physical store in Naperville.
Abel & Grace Pena with Danielle Danielle
Dr. Trujillo- Internist & Traumatologist Dr. Montero & Dr. Cervantes- Anesthesiologists
USS Midway Museum Erin Campbell at Road Runner Sports
June 20, 2013
THANK YOU MULLIGANEERS FOR YOUR GENEROUS SUPPORT!!!!!!!
Thank you Mom Smith and everyone who donated through Gofundme.com.
Thank you to my brother Jim and his wife Katrin for your donation and loan.
Thank you to everyone that donated from the Fall through the Summer to make Dani's 4th treatment a reality. We will keep you updated.
May 15, 2013
The fundraiser has ended at Piggybackr.com. We raised a total of $6,300 and are 1/3 of the way to our goal. Thank you everyone that donated and forwarded the fundraising information.
We are now going to have another short online fundraiser on Gofundme.com. It was brought to our attention just recently that the Piggybackr website might be deterring some people from making smaller donations due to it's setup for payment. So, we are going to run another fundraiser for two weeks in order to gain those smaller donations. We are grateful to everyone for their help!!
May 7, 2013
We are three weeks into the fundraiser and 1/3 of the way to our goal. Thank you to everyone that has donated!!
April 21, 2013
We are one week into our online fundraiser and 25% of the way to our goal. Thank you to everyone that has donated!!! Partnership levels listed on the "thank you" page.
April 12, 2013
This weekend we will be launching our online fundraising. We very much appreciate if everyone forwards the link to all of your friends and family on Facebook and email. The idea behind internet fundraising is to have a whole lot of people donate smaller amounts ($20-50) that in turn adds up to the amount needed to fund Dani's next (and hopefully last) stem cell treatment. Please put a small note before forwarding the link to let your friends know that you personally are connected to our family. (ie: this is a friend of mine from high school, this is my neighbor or cousin, etc.) Danielle made her own video for the fundraising event. We are thankful for your help in this endeavor.
March 20, 2013
Danielle continues to do well in school. She enrolled in Daisies (Girl Scouts) and loves being part of a group. We have new neighbors that moved in next door and they have a daughter Dani's age. The two girls like to play after school and are in Daisies together.
We have altered our plan for the intensive physical therapy program for the summer. We found out that Jeff's insurance will pay part of the cost for the program in the US. So, it will cost $2,000 (in network) to $4,000 (out of network) for the therapy in Mokena instead of $15,000 to travel to Poland. The therapy center is currently working to become in-network. I just found out on 4/12 that the Mokena intensive therapy programs for the summer are all booked. We need to think of a plan B.... back to Poland??
We are still fundraising for the money for the stem cell treatment and intensive physical therapy program. We appreciate assistance from anyone that would like to help fundraise for Danielle. You can hold your own fundraiser and donate the proceeds to Dani's fund. Thank you for your support!!
December 25, 2012
October 11, 2012
Danielle has settled into school. She is such a social person and enjoys being with her friends. Dani continues to walk with little help in the house. She still needs continued strengthening in her core muscles. Please check out her walking video under the August updates.
We are kicking off our 3rd Annual Fundraiser for Dani. Our next goals are another stem cell treatment in Mexico ($20,000) and/or a month long intensive physical therapy program in Poland ($15,000). Our family appreciates any financial assistance. Dani has come along way in the past three years due to the generosity of others.
Donation information is available on the "Donation" page. Thank you!!
Danielle having a tea party with her Dora's & teddy bear
September 11, 2012 (July & August Update)
Danielle turned 6 years old on the 6th- her Golden Birthday!!
DANIELLE IS BEGINNING TO WALK INDEPENDENTLY AT HOME!!!!!!!!!!!!
Dani has made great strides the last couple of months. She is walking longer and longer distances at home independently. We also put her bike training wheels up on bricks and she is able to peddle on her own. Jeff and I could not be more thrilled!!!! We thank EVERYONE involved with Danielle over the last three years!!! There are so many people that have given generously in order to make this happen. We thank all of the people that helped fundraise, those that donated generously, the doctors involed in her treatments, the therapists, the Foundations and Charities that funded therapy and equipment. We are so grateful to everyone for helping to make our dreams come true!! Danielle will live a a more independent life thanks to everyone involved. Please take a look at her progress.
The summer flew by so fast!!!!! In July, we received the Universal Exercise Unit ("cage") from the Muliganeers. It is such a wonderful tool. With the full cage we have been able to cut Danielle's first
"at-home" program from 2 hours to 1 hour. Also, Danielle is able to have fun in the cage by practicing balance games on the Wii balance board while being secured by the bungee cords.
Additionally in July, Danielle had her "at-home" program updated with some additional exercises. This update was also funded by the Muliganeers as well. Southwest Community Services provided some additional core exercises and we will update the program again this Fall.
June 18, 2012
Well, Microsoft changed our website and has delayed my monthly updates. To pick up from the March blog, Danielle has regained some feelings in her right toes, but not in the left. However, due to regular visits with Dr. Minor Danielle has better circulation in her legs and feet. I have found her several times outside of her covers at night and her legs and feet are warm. Previously, her legs and feet have always been cold.
The Mulliganeers have awarded us a grant for the Universal Exercise Unit. This is the equipment that Dani is pictured inside while performing her intensive therapy exercises. The Pediatric Fitness Center loaned us a partial cage while we tried to find a grant. THANK YOU IZABELLA & RICHARD FOR YOUR GENEROSITY. The Mulliganeers also awarded us a grant for Danielle to visit a local rehab facility that is trained by PFC in order to update her intensive therapy program. WE ARE SO GRATEFUL TO THE MULLIGANEERS!!
Danielle is still working on balancing as she walks.
Yes, a lot has happened in the last two months. Danielle is going to begin hippotherapy at Equine Dreams in Newark, IL. Hippotherapy is therapeutic horseback riding. This program is from grants as well. I was very impressed with Rick's evaluation of Danielle and I am looking forward to the sessions. He placed Dani on a horse riding simulator that was really cool. Danielle stayed on the whole time even while moving her arms to the side, up and behind her back. Samantha, Dani's older sister, wanted to try the simulator. After two minutes, Samantha said that it was hard work, and Dani stayed on for ten minutes without complaining.
This is going to be an exciting summer! Tomorrow we are going to visit the Maurella's and go swimming. Ava Maurella is Dani's friend with Spina Bifida that is in the photos in the gallery.
Thank you for checking on Dani and have a wonderful summer!!
March 31, 2012
Danielle had a bit of a setback recently. She was treated by someone that left her paralyzed from the knee down. I am glad to say that thanks to Dr. Minor she is doing much better. I hope that once she gets her new AFO's next week she will regain more feeling. Currently, she does not have feeling in her toes, but has regained most of the feeling in her feet and lower legs.
Amazingly, Dani is still taking 8-10 steps and balancing as she walks!!!
February 28, 2012
Danielle is taking 8 steps consistently between Jeff and I. Now, she is balancing as she takes her steps. She is getting sooooo close!!
January 30, 2012
Merry Christmas and Happy New Year!!
Danielle continues to move forward and get stronger. She took 10 steps between Jeff and I the other day. I think that she has a good chance to walk by herself, but she does not have the confidence. I am trying to get her to take a few steps between things, such as from the wall to the couch. We are continuing to work with the "at home" program from the Pediatric Fitness Center. Our new goal is to find a grant or grants to pay for the Universal Exercise Unit (the white cage in the photos below). We want to be able to continue Dani's exercises with the same intensity at home.
THANK YOU TO EVERYONE THAT DONATED FOR THIS NEW ROUND OF THERAPY AND STEM CELL TREATMENT. IT MEANS SO MUCH TO US TO HAVE SO MANY FRIENDS CARING FOR DANIELLE AND OUR FAMILY. WE WOULD LIKE TO SEND A SPECIAL THANK YOU TO RAUL GOMEZ FOR YOUR GENEROSITY!!
Samantha & Danielle
November 25, 2011
HAPPY THANKSGIVING!!! Thanksgiving fell on Samantha's birthday this year, so we had a double celebration.
Last week Danielle and I traveled to Nevada for a stem cell treatment. She is a doctor's dream patient. The nurse drew 10 vials of blood and she didn't even flinch. The blood draw was on Tuesday and she received her stem cells on Thursday. Everything went well and she feels good. Generally, we begin to see some physical improvements at 2-3 weeks post treatment. I can't wait!! We are only home this week and on Sunday we leave to Michigan again. Danielle will complete her intensive physical therapy program at PFC over the next two weeks. I am so optomistic that the stem cell treatment along with the intensive therapy will yield promising results.
Please say a prayer for Danielle!!!
October 26, 2011
Danielle has done awesome with her intensive physical therapy. The therapist isolates the weak muscles in one leg by placing sand bags on the opposite leg and a belt across her abdomen. Danielle doubled the weights that she lifts from week one to two. Also, Dani moved her leg outward for the first time. The muscles that she needs in order to walk are week, but are weak. Therefore, if we keep isolating and strengthening the muscles, then she should be able to walk. YEAH!!
Danielle worked out in a spider cage and lifted weights attached to bungee cords. She also wore the Therasuit for sit ups, kneeling, standing, and walking. Photos of the therapy are below. You can see the intensity on Dani's face in some of the photos. Danielle's therapist is Beth and she does a great job!! Thank you Beth!!
We would also like to thank the Spina Bifida Association of Illinois for a $500 Grant!!
Beth and Danielle
October 6, 2011
GREAT NEWS!!! Danielle and I are leaving on Sunday for an intensive physical therapy program at the Pediatric Fitness Center in Michigan. We have been approved for two grants that are helping to make this possible. We are approved for a $4,000 grant from the First Hand Foundation and a $1,000 grant from the Next Step Kids SCI Foundation. We sincerly thank them so much for this great opportunity.
The total cost of the PT program is not yet covered nor is the cost of the hotel. Donations toward this expense are greatly appreciated.
October 5, 2011
Daniell stood for 6 1/2 minutes today and 5 1/2 minutes two days ago!!! She keeps getting stronger.
September 27, 2011
Video of Danielle Walking
September 6, 2011
Danielle's 5th Birthday!!!!!
August 11, 2011
I can't believe that the summer has gone so quickly. Danielle had five therapy sessions at the stables and then they closed down. We were soooo disappointed. I was beginning to notice a difference in Dani's balance. We have a lead on another stables for next summer.
Danielle's buttock and hamstring muscles have become much stronger. She can take 5-6 steps at a time.
We had hoped that Danielle would be walking on her own by Dr. Mark's Magic Show in October. She is so close, but not quite there yet.
Danielle lost her first tooth a couple of weeks ago. She is excited to begin Kindergarten; and has transitioned from her walker to using her crutches. I figured that it would give her more independence in school.
Blueberry Picking Camping with the Goss'
Had a great time playing with our cousins I love my Uncle Ray
(Amelia & Allison visited from Florida)
Played with friends Ava went horseback riding too!!
What a fun summer!!!
May 25, 2011
Danielle is beginning to balance better as she takes her steps. Her new AFO's are fixed and she is walking again. Last week Danielle began the first of a five equine therapy sessions. Oh my goodness.... she absolutely loves it!! After ten minutes on the horse with the instructor she told her, "ok, you can get off now, I've got it." She is little miss independent. I think that the endorphen rush from the horse and riding is enough to make a difference. She learned to make the horse walk, stop, turn, and trot. Danielle did a lot of stretching and standing exercises. Equine therapy is supposed to help with balance and core.
Equine therapy is with Lisa Rizzo at Manhattan Meadows in Manhattan, IL. Sessions are 4 for $100, which is unbelievably cheap for equine therapy.
April 15, 2011
I HAVE SOME GREAT NEWS!! DANI IS POTTY TRAINED!! I TOTALLY ATTRIBUTE THIS TO THE STEM CELLS! Prior to stem cells Danielle could feel her stool, but could not feel when she had to urinate. Since her stem cell procedure she can now feel when she has to pee. She has gone several days without an accident, and she can hold it until she gets on the potty. She can not fully void her entire bladder and has to push with her hand on her abdomen to help get it all out (a much better alternative to catheterizing). NO MORE DIAPERS!!!!!!!!!!!! I am so very proud of her, she works so hard. This is a MIRACLE!!!!!!!!! Danielle's potty training was with Wendy Sweeney at bootycampmom.com. A HUGE "THANK YOU" TO LEXI KAZIAN FOUNDATION WHICH FUNDED DANIELLE'S POTTY TRAINING CLASS.
Also, Danielle has been working hard at strengthening her buttock and hamstring muscles. After a couple of weeks there is a definite difference. These are the muscles that Dani needs to strenghten in order to walk more. She still consistenly can take 4-5 steps on her own at at time.
Thanks for checking on Dani's progress!
March 28, 2011
Danielle is doing very well. She is back to where she was before the new braces. Dani is walking holding our hand with little pressure. She is also taking four steps by herself. Next week Danielle is beginning a two week potty training course. We do not know if this will work, but it is our best hope to have her potty trained. Only 15% of children with Spina Bifida have bowel and bladder control including those that walk.
Dani is also working on enrolling in kindergarten. The age deadline for enrollment is September 1st and Danielle's birthday is September 6th. Basically, if she can add, subtract, and write her capital letters, then she will be admitted. This should be no problem as Danielle is bright and can already read very very well.
Thanks for checking on Dani!!
March 15, 2011
Two days after Dani put on her old braces she began to take two steps again. Yesterday Danielle had her old braces on for four days and she was back to taking four steps on her own. Obviously, we need to get the new braces remade with the lighter weight plastic. So, we have had a three week set back, but we are determined to keep moving forward.
Danielle has just received a grant for a potty training class. We are very excited about this and it is our best chance to have her trained. She begins the first week of April. We are praying really hard that this works! All prayers are welcome!!
March 8, 2011
Danielle received new AFO's (leg braces) 10 days ago and her walking has taken a step backwards. She says that the braces feel different. Dani has a friend that got new AFO's three months ago and she is still having problems with them. Both girls have the same orthotist and the new braces were made with a harder plastic. We will give the new braces another two weeks and if Dani's walking hasn't returned, then we will be going back to the old braces.
February 22, 2011
Last night Danielle took five steps. We are so excited!! She can regularly take three steps now. Danielle can also stand for two minutes at a time. She also has more feeling in her buttock. We are so encouraged at her progress four months out from her stem cell procedure.
February 9, 2011
Danielle has taken three steps multiple times each day this past week. She works very hard at therapy every day and it is paying off. I will attempt to post a video of her progress next week.
January 31, 2011
Danielle can consistently take two steps. She is working hard on taking a third step.
January 15, 2011
Danielle began aquatic therapy on Wednesday. She had a good workout with Ms. Jen in the pool. She continues to be able to stand for almost a minute by herself and can still take one step by herself. Dani has physical therapy on Monday - Friday from 8-11am. She is a determined little girl.
December 27, 2010
Danielle can now stand consistently for 40-50 seconds at a time. She is begining to initiate a step from the standing position. Slow and steady wins the race!
December 25, 2010
December 15, 2010
Danielle has to wear glasses again. We hoped that the double eye surgery would also fix her vision. The surgery fixed the crossed eyes, but not her vision. Dani's vision is quite bad. However, she looks really cute in her new glasses.
December 8, 2010
Danielle has had another milestone. Her taste buds where damaged when she was an infant and it was a chore to get her to eat and drink. Food just didn't have taste for her. In the last two weeks her taste buds were fixed by the stem cells. She has begun to eat and drink and likes it. She says that food tastes different now. We are so happy!
November 23, 2010
Danielle still has good energy and is feeling well. She is walking well with holding on to our hand.
November 15, 2010
Danielle is feeling great! She is getting more sensation in her lower legs and feet. She felt Jeff pull hairs on her legs and also felt him blow on her feet, both done while she was not looking. She has more stamina and seems to have good energy. We are very happy with the results so far and can't wait to see what happens over the next months.
October 25, 2010
We're back!!!! The surgery went great!! The doctors are awesome!!
Please see the "Mexico Trip" tab for details.
I will continue to update Danielle's progress every 2-3 weeks.
October 17, 2010
Danielle is having her procedure on Thursday the 21st. We are so excited! Thank you to everyone who has helped make this happen.
October 5, 2010
The test results came in this morning and all is well. I am going to book the flight to head to Mexico. Danielle will have the procedure in two weeks. Please keep the prayers coming for our little girl!
September 15, 2010
Danielle's stem cells have been sent to the lab for viability testing. Things are moving in the right direction. And..... I am now "4" years old!!!
September 7, 2010
Well.... we have been on another roller coaster ride. Two weeks after we had the initial approval to move forward in Mexico, the procedure was canceled. With another week of waiting the procedure was approved by the Director of the Hospital and the procedure is back on again. We hope to begin the testing on Danielle's stem cells within two weeks, and then have the treatment mid to late October.
Please keep the prayers coming! I know that this time she will get her stem cells!
August 15, 2010
THANK YOU FOR THE PRAYERS...... THEY WORKED!! The hospital in Mexico approved the use of Danielle's own cord blood. It takes a month to run various tests on her blood in order to have it released. I hope to start the testing next week. With all of the testing and red tape, I hope to be in Mexico for treatment in 6-8 weeks. "THIRD TIME IS A CHARM"!!!
Thank you for checking up on Dani!
August 9, 2010
Last Wednesday I found out that the week prior Mexico instituted regulations similar to the FDA. This now makes using donated stem cells very difficult. We have been waiting for a donor match for Danielle for eight long weeks. Now, we may have to start all over for a third time. I am having a conference call with the doctor in charge tomorrow morning. Please pray that we can still proceed with the umbilical cord blood stem cell treatment for Danielle as originally described. Thanks US government. So, besides not allowing us to use Danielle's own cord blood which is sitting in storage, now our government is putting pressure on other countries to conform to their rules.
July 17, 2010
We have been waiting for a match for five weeks now. Some good news is that the company we are dealing with is working on an agreement with the largest hospital in Northern Mexico. This will open up our donor base and hopefully help to find a match.
Danielle and Samantha are enjoying the summer playing with friends, swimming, and raspberry and blueberry picking. We hope that everyone is have a great summer as well.
June 29, 2010 Still waiting for a match.....
June 22, 2010
The company in Mexico has been searching for a blood type and gender match for Danielle for a week and a half. Due to her rare blood type, it may still take a few weeks to find a donor. As soon as we find a match, then we will be on our way.
June 8, 2010
We are so excited!!! We have settled on a treatment plan and the company will begin looking for a donor in a few days. We do not know how long it will take to find a donor with Danielle's rare blood type, but we hope to be leaving in a couple of weeks.
June 2, 2010
We have located a company in Mexico that we find to be reliable and honest for stem cell treatments. Unfortunately, it takes a longer than we would like to have all of our questions answered and to set up the procedure. The company has a few different options involving stem cells and we are reviewing which treatment is best for Danielle. We really hope that she will have the treatment in the next couple of weeks.
Great news! A two year old boy with Spina Bifida visited China just after we left. An email today from his mother states that he has just begun to take steps on his own without his walker. We are so excited for them and know that Danielle will be doing the same very soon.
Thank you for checking on Dani and for your continued prayers!!