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Do you shop at Amazon.com or know someone who does? Click on the link below, or any Amazon link in this blog, to help us earn Amazon Credit in order to buy therapy equipment! Anything you order off Amazon counts! Please bookmark Madi, Ramya and Deena's link and pass it on... every order helps! http://www.amazon.com/?_encoding=UTF8&tag=missmadi-20

Tuesday, May 26, 2009

My little gal is one smart cookie!


Today we saw Dr. Teodori, Madi's neurologist, at Phoenix Children's Hospital.  She gave Madi a thorough examination and is pleased with the results.  She agrees that Madi is one bright and shining little girl.  She said she is doing remarkably well considering all that she is dealing with.  We went over her latest MRI closely and discussed what we saw.  Madi has a corpus callosum, however it is thinner than normal and is missing at the tail-end.  Other parts of the brain can make up for it, so at this point, we aren't terribly worried.  One of her ventricles is fuller than the other which is pretty typical.  The side that is not shunted has more fluid than the shunted side.  We actually already knew this from talking with Dr. Moss a few months earlier.  She showed us what, specifically, her Chiari II malformation looked like and discussed what that meant with us.  Although we can never know what the future holds, things are looking good for now.  Madi is progressing well and we are just taking things one day, one appointment, and one test at a time.  Madi has a lot of people who love her, and she is a very blessed little girl!  We know she will continue to thrive despite her circumstances.  Heck, she is just as stubborn as we are!

Tuesday, May 12, 2009

I am still in the editing process, but...


I am composing a letter to send to our wonderful legislators about the proposed budget cuts for early intervention (basically physical therapy, occupational therapy, etc...).  They initially tried to take away all services our special little kiddos receive, but that will illegal and didn't fly.  Now, in addition to major budget cuts, they are saying they may have parents pay a percentage of it.  I know it doesn't seem like much, but when you already pay for private insurance and the millions of other little things that go along with having a child with special needs, it adds up very quickly!  For us, we pay $450 a month for insurance.  Our deductible is $2,500 a year and our co-pay is $35.00.  Madi receives physical therapy and has a developmental specialist for an hour a week.  She also will be starting occupational therapy.  Currently, the Department of Developmental Disabilities pays for the amount not covered until our deductible is met and our co-pay.  I know we are lucky to have the support, but couldn't give Madi what she needs without it.  We would be paying the $450 a month for insurance and $105 a week for her services, and that's after we met the $2,500 deductible.  In the near future, when Madi needs walkers, wheelchairs, etc..., we will also be paying for that.  Then, if she ever needs to be cathed, there are those supplies, the co-pays on her medicines, adaptive things she will need for our home, gas to and from appointments, and many more expenses.  Although she is worth EVERY penny, those pennies add up quickly!  The legislators are saying they are not hearing from parents who are unhappy about the changes.  I think they forget that our time is limited!  So, pardon my long story and my spelling errors, but here is a draft of the letter I am writing.  I will be sending it to everyone I can.  I hope it inspires others out there to write a letter too.  Let your voice be heard!




Dear ,

 

I am writing to you concerning the proposed budget cuts for early intervention programs in Arizona.  I am a mother of two and my youngest, Madilynn, has spina bifida, hydrocephalus, and a Chiari II malformation.  She is currently five months old and receives physical therapy, services from a developmental specialist, and is being evaluated for occupational therapy.  Although we pay for private insurance, we also utilize The Department of Developmental Disabilities (DDD) and The Children’s Rehabilitative Services (CRS). These services are absolutely crucial to her physical, mental, and long-term wellbeing.

 

I am an educated individual with a Master’s Degree in Elementary Education, a reading endorsement, and an SEI endorsement.  I have even taken a few special education courses at the college level and still do not have enough knowledge of how to most effectively work with Madilynn and help her live up to her full potential.  It honestly takes the efforts of trained, knowledgeable, and caring individuals, such as the ones that work with Madi, to give her the assistance she needs.  The specialists have given me ways to work with her and it is because of them that Madi is doing as well as she is.  We have seen her make tremendous strides in just the few months she has had assistance.  Unfortunately, though, when Madi meets her current goals, I will once again be at a loss of how to help her.  Both Madilynn and I need the help and support of her therapists on a regular basis. 

 

As you and I both know, money is short and changes must be made.  I am thankful that federal stimulus money is available, but know that more needs to be done.  I am asking that you will seriously consider taking money from other places so that our children can still strive and receive the help they so desperately need.  For example, instead of paying for elective epidurals for women receiving ACHHS, you can pay for something that, in my opinion, is absolutely not elective-- our children’s futures.  If Madilynn does not receive the help she needs now, her chances of walking are very slim,.  The cost in the long run will be much greater not only for us, but also for the State.  Madi is at her most critical point of development, and needs immediate, ongoing assistance.  I have attached a copy of the appeal I sent to DDD and ask that you read that for more information about that long-term costs that will arise if early intervention budgets are cut.  You can also read more about Madilynn and the amazing little gift she is by visiting www.missmadisjourney.blogspot.com.  When you make decisions regarding budget cuts, please remember my daughter and the disservice you will be doing to her, and others like her, by taking away even 10% of the budget.  Our children need you.

 

Sincerely,

 

 

 

Jamie Veprek


The doctor says things look good!



This is an old picture, but I love it, so I just had to throw it in ;)

Last week we went to the Children's Rehabilitative Services (CRS) clinic and saw Dr. Zuniga, Madi's urologist.  They took an ultrasound of her kidneys and bladder (and I almost got in a fight with a nurse... long story, but let's just say, you don't mess with my child ;)) and things are still looking good.  Though she does not function perfectly in those areas, there is not too much pressure and we do not need to start catheterizing her, which was awesome news!  My prayer is, and always has been, that her bladder work well enough to not have to cath her.  We go back for another ultrasound in 3 months.  

Today we went to her normal pediatrician, Dr. Nemivant at Pediatrix.  Madi's weight is in the 5th percentile, her height in the 50th, and her head in the 55th.  Because of her hydrocephauls, her head has always been a bit larger, though it's not noticeable.  He was not worried about her weight, either, which has always been in the lower percentile.  I asked him to swab her diaper rash and see exactly what it is so that we can wipe it out.  We're waiting for the results back but he prescribed an antibiotic that is supposed to help in the meantime.  We have yet to Vaccinate Madi and I'm not sure if we ever will, or what we will vaccinate for, so our check was fairly quick.  He said Madi is looking great, though we already knew that ;)!