Standing, here we come!!

Today was an appointment I am VERY excited about! Madi wants to be standing and upright so badly, but she just cannot make her little body do it. Because she does not have any movement below the hips, she is unable to support herself. Today we went in to get fitted for a parapodium, which is a device that will help her hold her body upright so that she can stand. She will also be able to move around with it. She won't be given a walker yet, since that would limit her ability to twist her body from side to side, but will be given a walking-stick type of device instead. Tami, her physical therapist, will work with me and teach me how to help her get around in it. Ron, from Hanger, is hand-making her parapodium for her. Don't ask me what it's going to cost because I don't even want to know ;). Tami and Ron talked so that he would know just how to design it. Unfortunately, it is not something Hanger normally makes, so he will have to order some supplies and we will not have the stander until right around Christmas time. I am so excited for her to finally get to be at her peer's level, though, and it is well worth the wait!!!. Watch out world, here comes Madi!!!

P.S. In case you are wondering about the photos... the first one is the mold they made of Madi's torso. I couldn't take a picture while they made it because I was helping to hold her and keep her happy. The second photo is of her getting measurements done.

It's been a rough week

This week has been a rough week with Madi. To start with, a few weeks ago my grandmother passed away and though we were expecting it, it's always hard to loose someone you love. Shortly after, an 'internet friend's' (someone I met on the internet) baby passed away. She was 9 days old and had spina bifida. She died during a routine surgery to insert a shunt. I met her mother when she contacted me through Madi's blog. She had a sister with spina bifida that died in her 30's after having a bladder-related surgery. The surgery went well but she got an infection that shut down her organs. Now, she was having a baby that would be born with spina bifida. She found my blog and contacted me to ask me some questions about what she should expect. She is a wonderful person and I enjoyed chatting with her as she waited for her angel to be born. This his pretty close to home and is pretty much my worst fear come true. Please keep her family in your prayers.

So at this point in time, I'm a bit emotional because of all of this, which is pretty unlike me (No, I'm not pregnant. If I am, we have a urologist to talk to....), which has not made this week any easier. The fact that this is a terribly busy week, with four doctor's appointments, three therapy sessions, practice for the women's tea at Church, a play, and the women's tea itself, hasn't helped much either.

On Monday we went to Saint Joseph's hospital for some routine tests for Madi. She needed a renal ultrasound and VCUG to see how her bladder and kidneys were functioning. I have been waiting for this VCUG for a long time. Madi has renal reflux where the urine travels back from her bladder in to her urethra on the left had side. It was never severe, only a level 2, and we were hopeful she would outgrow it. In fact, I have been praying very hard that she would. Along with the reflux comes an increased chance of urinary tract infections, and, because of that, they want kids on antibiotics as long as it is happening, and at least for the first year of life. Though I do believe antibiotics are necessary in some cases, I really did not want Madi on them for an entire year. After talking to a naturopathic doctor, we started her on D-Mannose with the hope that it would help. It did wonders...... until I forgot it on vacation and forgot to give it to her when we got back :(. Back to my story.... we went in for the VCUG and I was fully convinced that it would have resolved itself and would no longer be an issue. Unfortunately this was not the case. Not only does Madi still have the reflux, it's actually worse. Not good. To top it all off, her urine was cloudy when they cathed her and sure enough, she has a nasty UTI. It was in the beginning stages so she wasn't showing signs yet. Because of her decreased level of sensitivity she does not fully know something is wrong, which is a blessing and curse all in one. I am thankful it is not painful for her, but it's really hard when she cannot tell me something is wrong with her because she does not know herself. The urologist, Dr. Zuniga, is sending us for another test in a few weeks after her UTI clears up. This test should tell us if her bladder is spasming or not, as well as how much urine it can hold. Depending on the outcome of this test, we may have to start cathing her multiple times a day. To someone with a child who has spina bifida, I know this is no big surprise and no big deal, it is something you do on a daily basis. For me, though, it's heartbreaking. Since before Madi was born my biggest prayer has always been for her bladder to work well enough to not need to be cathed. It's not the cathing in itself but more what it means; more surgeries and more medications (I hoping to get in to a naturopathic urologist so we can bypass most or all of these). First they will want to put her on an antibiotic so she does not get an infection. Then comes the medication to try and increase the amount of urine her bladder will hold. After that we have the medication to keep her dry in between cathing. When she gets older, though, if she does not out grow the reflux, there is a surgery for that. If she does, but we are still cathing, there are surgery options so she can self-cath easier. The more surgeries she has, the more risk she is at for complications, which can always mean one day I do not get to bring my baby home with me. I know I may be jumping ahead of myself, since we do not yet know for sure if she will need to be cathed, but at this point it is a very, very good possibility.

I know that God is in control and I know that He has a plan. I know that I am so fortunate to have my angel here on earth with me. I know whatever is coming our way, we can handle, because He will not give us more than we can. I am trying so hard to remember that right now and not be discouraged. Please keep us all in your prayers, we would not be where we are without them!!


For anyone else who feels discouraged, this is one verse that I call to memory when times are rough:

Joshua 1:9
Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go."

Our Kiddos Need You!

This is for all of my fellow Arizonians :). There are rumors that they are considering further cutting back on services and funds at the Department of Developmental Disabilities (DDD)/ The Early Intervention Program (EI). The news of this saddens and infuriates me all at once. Many families cannot afford the therapies their children need without DDD coverage. This doesn't just effect families of children with a disability. This effects us all. Studies have shown that early intervention saves enormous amounts of money in the long run. Our children need help when they are most vulnerable and developing the fastest. Please take a minute to write a letter to our legislators, send an e-mail, or make a phone call. Let your voice be heard... our children are not numbers, they are people, and they are our future!



Here is the information I received on this matter:

Attention Parents, Consumers and Providers

As you may be aware, the Arizona Legislature is trying to establish a new budget. Unfortunately they are considering cutting the Division of Developmental Disabilities services. They are actually considering stopping all respite, habilitation and attendant care services. Senator John Nelson’s office on October 22nd informed agencies that the only way to save the program is to get as many people to email, write letters and call their Legislators to let them know that they will not get your vote if they cut the budget to the Division of Developmental Disabilities.

We all need your help! Every person makes a difference. Please email, write or call as many Legislators as possible. They are keeping count of how many responses they get. These people desperately need your help. I am asking everyone I know to please forward this request to everyone they know and ask them to keep passing it on. Each one matters.

Below are the addresses, phone numbers and emails of the state legislators in both the senate and the house. If you don’t know your district, you can call or go online to http://www.azleg.gov/MemberRoster to find your specific representative. You can notify anyone on the list, even if you are not in their district. They all represent Arizona.

Happy Birthday Miss Madi!

We cannot believe you are one year old today! Wow, has the time flown by. It has been a wonderful first year. We've had our challenges and setbacks, but none of those matter. We just wanted you to know that we are so thankful and blessed to have you in our lives. You are such a joy and inspiration. Your dedication and strength, even at a year old, is absolutely amazing! Papa is right, you will change the world! We all love you so much!

Round 3...

A few days before Disneyland we got Madi's third, and hopefully final, shoe for her clubbed foot. This is a custom AFO made by Hanger. The man who made it, Ron, is highly recommended and has a lot of experience with children that have spina bifida. He is a very gentle and kind man. He did an awesome job and we are praying this one works! Conner picked out a cute little heart print for her and she looks adorable in it, of course. We still get a million questions and comments as people don't understand why she needs it, but such is life. I'm so thankful to finally have her in something that doesn't bruise and hurt her little foot!

Such great news today!!

Though it is too easy to say when things are going well, GOD IS GOOD! All the time! We went for a routine MRI today, as well as a routine neurosurgeon appointment. The MRI went smoothly. They allowed me to get in the MRI machine with Madi so that they did not have to sedate her. I rubber her little soft face and sang to her while they did what the call a "big bang MRI", which only takes about 5 minutes. It was a bit eery feeling to be crammed in such a small, enclosed space, but I was thankful to be there! Madi did great because she knew momma was right there with her the whole time. She wasn't a huge fan of the ear plugs or the fact that she could not move her arms, but she really did great! I got a little nervous for the appointment because Mary, Dr. Moss's nurse practitioner said she would look at the MRI and be back, but kept not coming back. I was starting to get worried, especially considering we are supposed to be on a plate today to head to disneyland. She said there is more fluid in the left side, just like there was before, but things looked good. The reason it took so long is because she called Dr. Shaffron and had him compare her old MRI to her current one. Things looked pretty much exactly the same. THANK YOU GOD!! Then she said the most amazing thing..... we will see you in 6 months! Now, for some people, 6 months might not sound like a big thing, but to us it is HUGE. We had a very rough start with shunt problems and within the first 2 months had spent about 1 month in the hospital. Those were some very rough times. For now, things look great, and I couldn't be more thankful. We're taking it one day at a time.

My little baby's first sickness

Though Madi has been sick in the past, it was always what I call 'shunt sickness', because it was always something to do with her shunt. This time, though, Madi is just plain sick. She's been sick since Monday after catching her brother's swine flu (I think, but it hasn't been tested) bug. She's been spending a lot of time wrapped up on momma, which is by far the best place to be when you are feeling sick. Today, though, all she wants to do is sleep and her fever is back. We have spent hours and hours in this same position. She was awake long enough to go get her third shoe for her foot (pictures to come when she is feeling better), but that is about it. If she does not improve by tomorrow, I will be taking her in to the doctor. Please keep my little angel in your prayers!

Look at my big girl go!

After many, many, many attempts, I think I may have successfully uploaded a video of Madi crawling. If you look very carefully, you can see her new tooth, which is on the top left. Both my kids got their top teeth first, which is odd. I am so very proud of my little girl. She is going to change the world, I just know it! She's already changed ours so much in the short time she has been with us. Have I mentioned how amazing she is?

Kissed by an angel

Today Madi surprised me with something wonderful.... a big, opened mouth, slobbery smooch! It was wonderful! I had said "Madi, Kiss" and made a kissing noise, but was not really expecting anything in return. Instead I got a big kiss! Madi leaned forward with her mouth wide open and planted a big one on me. I wanted to see if she really knew what she was doing or if it was just coincidence so I did it again later in the day and, sure enough, I got the same response from her. My little girl is just growing up way too fast! Too bad she's not allowed to date and practice her new skills until she's at least 30.

Ok, ok, just a few more pictures

My first train ride

My mommy loves being close to me

Sitting pretty

Mmmmm.... corn

A little dose of cuteness to brighten your day

We start them out young

My beautiful eyes

Yes, I'm always this happy

I have an awesome brother who is a good friend

Riding in style

She's got some fancy new shoes

Madi's cast is officially off! YEAH!!!! She is now sporting a very cool pair of new shoes. I'm going to make little flowers and bows to clip on them and have already ordered a few pairs of cute knee-high socks from the children's place. I mean, hey, she's still got to be stylish, right!?!?!? We are, unfortunately, having some issues with these, so she actually may be getting a different pair. I noticed she was getting pressure sores on her left foot that weren't letting up after 30 minutes. She also had some swelling and warmness, which is not normal and was only on her left foot. I started using the "pringle chips" to alleviate it but it's not working. Her feet are also not staying planted in her shoes as they should. I constantly readjust, and they constantly pop out. It is an upward battle for sure. I showed her physical therapist (who, by the way, we LOVE) today and she is also concerned. We have an appointment set up to go back in and see Dr. Segal so hopefully he can help us figure out what is going on. Let me tell you, though, this girl is something else! She doesn't let anything get in her way. She's already figured out how to start crawling around again. What an amazing little gal we've been blessed with!

Hard work can be fun

After winning our court case against the state, we had to figure out how to incorporate additional hours in to our therapy sessions. The only way to do that for occupational therapy was to do two consecutive hours, which is a lot for Madi to do at once. We decided that the best way to break it up would be with some fun play as well as some eating time. Danette, her OT, suggested that we do more swinging time. Though it looks like fun, and it is, it also very beneficial. Both Madi and Conner loved it! The swing hangs in the door-frame and you can use different swings and attachments. I would love to find one that we can use more often. Madi is getting too big for her vibrating chair and cannot be in any type of exasaucer, making it hard to put her down when I get ready in the morning. I am trying to find a used door-frame system so that I can put Madi in a toddler swing while I get ready so that she is both close and happy. If anyone knows how to make something like this http://www.especialneeds.com/support-bar-rainy-day-indoor-playground.html and can help, I'd be forever grateful! In the meantime, we'll keep swinging!

And that's that!

Her heel cord is officially clipped. I was praying it wouldn't need to be done, but it was just the way it had to be. I researched other methods for lengthening the tendon and talked to other parents who had children with clubbed feet but was unable to find another suitable method. The parents that did try other methods were not only few and far between but also felt the methods they tried were ineffective. All the kids ended up needing the lengthening anyway. Today she got her final cast, though, which is awesome! She will have this one for three weeks and will then go in to special shoes that will keep her feet positioned shoulder-width apart and at the correct degree of angle. I am so thankful we are able to utilize this method and avoid surgery and am praying that her foot does not slip back in to the clubbed position again. Unfortunately, this happens about 70% of the time with children that have a clubbed foot AND spina bifida because the foots tendency to re-club combined with the lack of weight bearing and, of course, gravity, make the reoccurrence rate pretty high. Our next step will be to utilize a stander to get her in to standing position and start bearing weight in her legs. And after that, well, who knows. It's been quite a journey, and it's not even close to being over, but I will say that I love it! I'm not sure why God chose all of us for our roles but I trust in His plan and know He has amazing things planned for our little gal.

Round Two...

Today was round two of casting. Madi's foot responded favorably to the first cast, which is awesome!! She had a sore behind her knee where her leg accumulated moisture in the heat so they casted her leg a little straighter to try and keep this from happening. I have been trying to get her in to Dr. Segal's office, instead of going through CRS, so that she can get the weekly casting that is part of Ponsetti's method instead of getting bi-monthly casting. I just feel that this is the best way to help Madi. I spent almost an entire day on the phone with his office and CRS last week and not only didn't hear what I wanted to hear, but also got conflicting answers. I talked to Dr. Segal today and he told me who I need to talk to in his office in order to get her in. I'm excited to be able to go directly to him, even though it means out-of-pocket costs in order to do so. We feel it's important for Madi to see the best doctors and for her to have the best care possible. Dr. Segal is the best there is for the ponsetti method, CRS just isn't the best place for getting everything done in a timely manner. We waited another 3 hours today, but Mickey and Goofy were there handing out balloons and helping us pass the time. Conner was so thrilled to see mickey in person!

Madi has her first casting

Today Madi got her first cast to correct her clubbed foot. Dr. Segal uses the ponsetti method of casting which involves slightly moving the foot a little at a time and releasing the heel cord to correct the foot. We waited 3 hours at CRS (Children's Rehabilitative Services) before we even got in to see the doctor but both Madi and Conner did great! Conner was very sweet and kept kissing "sissy" to make sure she was ok. He was a bit sad that he didn't get a cast himself, but I wouldn't be surprised if our crazy little man ended up with some kind of cast at some point in his life. Madi is doing great with her new cast and is finally taking a nap after a long day! She did take a short nap all wrapped up on mom, so thankfully she remained pretty happy throughout the whole thing. We go back in two weeks to get a new cast put on. We are very thankful to have the casting option available to us so that another surgery is not required!

To Our Little Madilynn Joy

When at first we heard the news

We were a bit blown away

It was very hard to hear

You may not walk one day

We cried for you

But not from a lack of love

We mourned what we thought you could not have

Though we knew you were a gift from above

We were thankful God blessed us with you

And knew it would all be okay

We stopped our crying and smiled

Thanking God for blessing us this way

You are a very special girl

There is no doubt in our minds

You will accomplish great things

Who you are just shines

You are beautiful and smart

Compassionate, determined, and sweet

Even though you are still so small

We know you can accomplish any feat

We are honored to be your parents

And love you more than you know

We promise to give you the best in life

We look forward to watching you grow

Thank you for blessing us so abundantly

By just simply being who you are

You are absolutely perfect to us

Our bright and shining star

We love you!

I am just so thankful

When I went to visit Erik, Michelle, and baby Dylan in the hospital, it reminded me once again how blessed we are. Madi, of course, has special needs that she will spend her entire life fighting through and overcoming. That's just the point, though, she has her entire life! We were so blessed to get to #1: carry our baby full term, #2: bring our baby home from the hospital, and #3: know that her challenges are not (usually) life threatening. There have been some scary moments but God has been with us every step of the way showing us that He is there with us and always will be. We have a beautiful little girl who is capable of lighting up an entire room with just one little smile. She is amazing and we get to hold her in our arms every single day. If that isn't an amazing blessing, I don't know what is!

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!

Things are looking good!

Last week we had an appointment with Dr. Moss at Phoenix Children's Hospital.  They did an MRI of Madi's brain so they could see if her shunt was still correctly placed.  Everything still looks good, which was really a relief.  The fluid is being taken more-so on the side that the shunt is on and less on the other side.  It is not causing any pressure to her brain, though, so Dr. Moss is not worried.  I did inform Dr. Moss that we would be moving down the street from him so that any time we are worried, we can just bring Madi by so he can check her out :).  We are almost to the lowest point for the possibility of infection, which was very reassuring to hear.  I had been having nightmares about her shunt failing.  The first nightmare I had was that they had to draw fluid from her shunt and it was a dark brown color.  The second nightmare was that every time I tipped her head, I could hear water sloshing around.  We know that many people have Madi in their prayers and that means so much to us.  We are so blessed to be surrounded with people who love us and care for us!

Her first laugh

Today Madi laughed her very first (awake) laugh and it was adorable!  She started cracking up, but it scared her, so she ended up crying and laughing at the same time.  I wish I could have gotten it on tape, but we were at physical therapy at the time and I didn't have my video camera with me, or even my phone.  She is growing up so quickly!  I am glad I take every moment I can to hug her, hold her, and enjoy these little moments with her.  She is one amazing little girl!

Her name is Madilynn

Whenever we are in the hospital with Madi I get really frustrated with how the doctors talk about her.  Every morning they stand outside the door to our room and say "this is our myelomeningecele that has hydrocephalus" when they are updating each other.  I just want to scream at them (but instead choose to say it tactfully), "her name is Madilynn!"   Her disability does not definer her-- who she is defines her.  She is smart, beautiful, full of potential, easy-going, cheerful, strong, and very much loved.  Her name is Madilynn Joy Veprek, and she is perfect.