Guess what my little gal just did?!?!?!?!?

Today my very special little gal rolled from her stomach all the way to her back all on her own!  She is making huge strides and is such a strong and determined little girl.  I am such a proud mommy right now!  Way to go Madi!!

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!

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 ;)!

We Found a New Physical Therapist

Conner is SUCH a great helper!

Madi had a wonderful physical therapist (Gail at Aspire Therapy), but the 40 minute drive each way, once a week was killing us!  I knew that an in-home physical therapist is really hard to come by, but asked our DDD coordinator to send me a list of companies to call.  As I am looking at the list and calling places one catches my eye as they specialize in children with spina bifida.  I thought it was too good to be true, but called anyway.  I talked to the first person who was full, but gave me her associates number.  She asked what Madi's diagnosis was and when I told her Spina Bifida, she got really excited!  She said she loves working with children spina bifida and would find room for Madi.  I was so excited I wanted to scream at the top of my lungs!  She has come to our house once and is amazing!  She sings to Madi while she works with her and lets Conner "help".  She is such an answer to prayer!  I forgot her name and the name of her company, because I'm terrible with that stuff, but I'll be back later to update with that....

We won a picture contest

There was a contest on www.hyenacart.com/thebreastaurantbaby for the best breastfeeding photo.  If you won the prize was a shirt from their site.  I can never turn down a good contest and submitted a few of mine, and one was chosen!  I'm so excited!  Since Conner is still a bit of a milk mongrel too, she's sending them both a shirt!  YEAH!  I never win anything so I'm really excited.  Be on the lookout for the two of them sporting their new shirts.

Raising two special kids!

Last Saturday we went to the Raising Arizona Special Kids day at McCormick Ranch Park. We all really enjoyed ourselves and it was awesome to get a free day out to have some fun.  Being there just reiterated how blessed we are.  Compared to so many other Children, Madi's challenges (I always struggle with finding a word to put there.  I guess technically it's a disability, but that just sounds so inhibiting.  

On another note, Madi had a check-up with Doctor Moss at Phoenix Children's Hospital this week.  Her head measurements are coming back normal, her fontanel feels good, and her shunt appears to be working correctly.  We had a few really big bumps in the road in the beginning, but we are hoping to be past those now.  Dr. Moss said that once you have a shunt working well for about two years, you are good to go!  We are praying that this shunt is the one :).  Madi is continuing physical therapy with Gail at Aspire therapy and is doing well.  I am looking for an in-home physical therapist, though, and hope to have one soon.  We love gail, but the 40 minute drive, one way, to see her every week is getting old fast.  Research shows that children under 3 do best in their natural setting, so ideally, that's where we would like to be.  Madi also started receiving services from a developmental specialist.  She's getting a lot of help and is doing great!  She's a very happy, healthy, and strong little girl!  

I don't update about Conner much, since this blog was designed to keep people up to date on Madi, but he is doing very well also.  He is getting his last set of molars (for a while) which has made life interesting.  He was having a really hard time sleeping so our nautropathic doctor, Dr. Kail, at Arizona Advanced Medicine has us giving him small doses of melatonin and it's helping so much!  Hyland's Teething Tablets are a God-send too!  I'm in the process of making Conner a cape with Spiderman on it and he's thrilled!  He's a huge Spiderman fan!  Right now he's a fan of Spiderman, the letters 'o', 'a', and 'i', and the color blue.  He's a really smart kiddo and nothing gets passed him!  He is such a neat little boy and he makes life fun!

God blessed us with two beautiful, fun, amazing children and we are so thankful for that.  We truly are raising Arizona's special kids!