Wednesday, June 29, 2011

Going to the Movies With Your "Special" Kids

1 What are your thoughts?

Kids love going to the movies. As a parent, I love the anticipation as Ellie giggles with excitement of going to watch a show. The sound, the big screen and the lights are difficult to resist. Going to the movies is really fun, no matter who you are and how old you are, right?

Actually, the excitement of a movie theater is not shared by all children, and therefore, not by all parents. Some of us have children with sensory issues, and  a movie theater is an overload of sensory stimulation. Some of our kids simply cannot handle that as well.

A few weeks ago when we went to Lego Land, we decided to try their short movie theater type show. It was only 10 minutes long and we thought it would be a good indicator of weather or not Nina or Nichole could eventually handle going to a regular movie theater. They both made it through the first show, but there was no way they would watch a second how. Unlike Ellie who was loving it along with her friends.

The show was in 4D and there was no way they would have worn those glasses. Nina cried hard at the beginning and was begging to leave. It was too loud for her, and it was too dark. The only reason she stayed was because Ellie was staying. She took off her real glasses and buried her face on my shoulder, occasionally peeking at the show and laughing nervously at the funny parts. But it was loud for Nichole too, and her favorite word, "Scary" came out of her mouth every few seconds. Overall we felt they did really well, but those 10 minutes were as long as they could have handled.

Chatting with some of my wonderful Down syndrome friends, I discovered that there is such a thing as "Sensory Friendly Films." Encouraged by the Autism Society AMC has stepped up to the plate and there are several AMC locations where they offer the experience of a movie theater in a non-threatening, non-overload sensory way.

This is what they say in their website.

"The program provides a special opportunity for families to enjoy their favorite films in a safe and accepting environment. The auditoriums dedicated to the program have their lights up, the sound turned down and audience members are invited to get up and dance, walk, shout or sing! "


That sounds like something that we could try with Nina and Nichole! Do you want to know if there is an AMC theater close to you that offers a Sensory friendly Film? Just click here and see what is close to you!

Happy Movie Going!

Tuesday, June 28, 2011

Thriving Families: Finding Nichole

5 What are your thoughts?
Guess who got to write an article on special needs for Thriving Families Magazine? I did! It is pretty exciting to get to write for Focus on the Family. It is a short article but I am thankful for the opportunity to share my experience being the mom of children with special needs.

So go ahead, you can click here and read the article and let me know what you think!

Monday, June 27, 2011

My Girls, "The Sisters"

5 What are your thoughts?
Let me tell you a little bit about "the sisters."


Ellie is growing up too fast. I find myself watching her for long periods of time, mesmerized by her. I love her smiles, her creativity, her focus on whatever it is she is doing. Sometimes, I don't see a little girl but rather a big girl. She is a talented girl with a big heart and she is full of joy...and drama.

Ellie is one of Rapunzel's biggest fans. She has already decided that she wants to go to Disneyland to work when she grows up and become Rapunzel. She can quote the entire movie...no really. Every. Single. Word. And she can belch out the songs! She has always been  a good singer but this little girl has an incredible voice and when she sings, we just listen with big goofy smiles plastered on our faces! She is good! So there is no doubt that when it comes to singing, she is a Stumbo.

Ellie also is attending summer school. She was getting bored and said she wanted to go to school. She has loved school. I was a little nervous about sending my girl to school. She went to preschool and she did great, I never even had a hard time sending her to school. No tears, nothing. However, a big public school felt quite different to me. She has thrived! And, this is one of those times when we are so glad that we waited a year to send her to school. Some might call it holding back, but we call it building her confidence and emotional maturity.  I think her teacher really likes her and is thankful to have such a great little girl in her class. I know she has been impressed with Ellie.

She is beginning to show a lot of interest in riding bikes and playing kickball and her version of tennis. She is getting good at hitting the ball with the little racket we got and screams in delight every time she hits the ball.

Now we need to work on sharing with her sisters and not yelling at them when they touch one of her "untouchables."



Nina is doing really well from a physical standpoint...most of the time. She is still not wanting to walk. She could do it, but she is terrified of falling. Have you seen terror in a child's face? Standing and walking should not be instances where there is terror, but in Nina's case there is. She can stand and balance for a minute, we think she has it and all of a sudden a switch flips and she collapses in fear. I wonder how many times she fell and nobody was there to catch her. I do wonder how many times there was punishment involved with her disability. I saw Nina's best friend get hit for not walking, which makes me wonder about Nina.
On the other hand, Nina confessed to me a couple of weeks ago while she was taking a break from crying, "At the orphanage when I cried I always got to do what I wanted or Ira did it for me!" This was said with a little attitude.

Nina is really good a sharing...for real! She is the sweetest little thing as she will share with her sisters and with mom and dad. She finds great joy in sharing and I love that about her! She also loves to cuddle since she had surgery. She liked to cuddle before, but I don't think her body "felt" very cuddly. Now, she just likes to be held as she "fits" better in our arms.

In light of the fear of falling, we have been working on this. She has been using her walker outside in our backyard and our yard is not stellar when it comes to even ground. She has taken a few falls and tumbles and she is laughing about it. This is good! We hope this builds her confidence to realize that falling is okay and it is part of learning to walk. And she really loves being outside.


video
Lately Nina is not so much into photos but rather videos, so here she is being her silly self. You will see that old habits are hard to break. She still puts her knees together for balance because that is how she balanced for 5 years of her life. She also has to be reminded to put her heels down, and the walker as you will see is all about her arms trength and has little to do with using her legs. Still, she is a goof ball!




Nichole is a rascal...as usual. Nothing new there! She is all about climbing lately, can you tell form the pictures?

I feel like she is about to start talking. I mean really talking. When she was a baby I called my friend Leah on a day I was just frustrated about speech not coming along. She reminded me that age 4 is average for kids with Down syndrome to begin talking, and now that we are getting closer to 4, I can really see that. More words, more 2 to 3 word phrases, and lots of repeating! I cannot wait to get her back on speech therapy! We finally get to see a doctor on Thursday to get the referrals we need.

Her transitioning has been...tough. Nichole does not deal well with transition, and having a new house, church, and new people has been pretty intimidating to her. We have yet to have visitors come to our house and Nichole not be hiding in her room and calling them scary. She will not come out to see them and will cling to me or Andy or Ellie. That has been hard. Since she cannot communicate with us well, I think this is her way of dealing with "strangers." So for those wondering if kids with Down syndrome go to anyone that says hi, this is not always true. Nichole us very much all about her family and only her family.

And Nichole loves Barbie. Barbie dolls and Barbie movies. She is one big Barbie fan! And when we go outside to play, she calls for barbie up in the sky (because...she knows the Fairy Secret, and surely they will come) so she ask us to "fly her" so she can be Barbie too. Her pretend play and imagination are pretty superb.

So this is life with "the sisters." Fun, busy, and very girlie. I love it!

Saturday, June 25, 2011

Nina's Orphanage Best Friend

2 What are your thoughts?
I did not write a blog post today, because I want you to read about Nina's best friend from the orphanage and her adoption story. Okana and her family have become dear friends to our family and we cannot wait to visit them and finally meet face to face!

So go ahead, click here and read their story!

Wednesday, June 22, 2011

The Same Team

1 What are your thoughts?


It has been a productive morning. The pile of dirty laundry is now a pile of clean laundry. The breakfast dishes have been loaded in the dishwasher, and dinner is cooking in the Crockpot. Even better, I took a shower and got dressed before noon.


While the girls play nicely in the living room, I pick up the phone to call a friend. “Hi Kezia, I was calling to ask about…” I hear a scream. I turn around and two of the girls are fighting over a toy. While the tug of war unfolds, Barbie, who has been “jumping” in her dance class with my third child accidentally pokes the eye of her owner. An unfortunate event that sends her into a high pitch cry. All of this happens in a matter of seconds.

“I will have to call you later” I hang up the phone.

By lunch time, two of the girls have been in the naughty corner a couple of times. One has been sent to her room, and I have heard the phrase “It is not fair” more times than I can count. I admit I have wanted to say those same words using my outside voice a couple of times too.

When my husband arrives home, it is evident that we have had a tiring couple of hours. I am presently warning one of the girls, “If you take that from your sister one more time, you will go back to the naughty corner!”

“What is going on?” he asks

“It is pretty obvious, don’t you think!” I snap at him. As soon as the words leave my mouth, I know they are unkind. With my attitude, I take my frustration on him and fight him too.

“Honey” he gently says, “We are on the same team.”

His words touch the chaos in my heart. I don’t have to fight. I am not alone in this parenting adventure, I have a team mate, a soul mate, and a friend.

I take a deep breath.

“We are on the same team” I repeat, “I need help on this one or I will scream”

He takes over with the girls, who are excited daddy is home for lunch, and after a few minutes they are happy rolling on the floor with daddy. In the kitchen, I make peanut butter and jelly sandwiches.

Later that day, when the girls go to bed, Andy and I sit down with a cup of decaffeinated coffee and talk about our day.

We talk about being in the same team.

Sometimes it is easy to allow the tensions of life to pull us apart. It is easier to “survive” a day, rather than live it. The truth is, when I am only surviving, I have little time to stop and “gather around” to play as a team.

When our girls see that mommy and daddy are united, that they are a team, they feel secure. Mommy is not snapping at daddy, but rather asking for backup. Mommy is not going at it alone, but has a strong partner beside her.

Sometimes team members get crabby, sometimes team members do not pull their part. But we are still a team, we still play together. If one of the girls asks for something, we respond, “What did mommy say?” or “What did daddy say?” We don’t challenge or diminish each other’s parenting styles in front of the children. When tension rises and we have to play hard, we stay as a team, and we try to work together. When things go well, we can celebrate.

We sip some more coffee and smile as we look back at the day. Some days are harder than other days, and some days I chose to go at it alone. Those are the days I feel defeated. But we played well today and our friendship is strengthened because we are on the same team.

By
Ellen Stumbo

(A late Father's Day post)

Tuesday, June 21, 2011

Music Review: World of Praise Instrumental Hymns

0 What are your thoughts?
Do you enjoy instrumental music? Do you hear rhythms and they touch your heart, make you want to get up and dance, or simply close your eyes so you can really feel the music?

Ever since I was a little girl, classical music was played in my home. The love of classical music drew to instrumental music. There is something about just music that speaks to my heart. There are no words, no noise, just music. And if you "speak" music, you also know that music is not just music.

"World of Praise" is a compilation of hymns with music from different countries.From Latin rhythms , the deep soul of India to the clogging Irish music.  I knew the words for some of the hymns, yet the music was different and I could not help but imagine what heaven will be like, when we all come together, all so different, but praising the same God.

If you enjoy instrumental music, I think you will enjoy "World of Praise:Instrumental Hymns."

I received this CD for free by Discovery House Music in exchange for my honest review.re

Saturday, June 18, 2011

How to Organize Your Pantry

2 What are your thoughts?
  1.  Make sure that the chips and crackers are out of reach.
  2.  Make sure you get your food out of the boxes shortly after you move.
  3.  If you take too long to unpack those boxes, it is likely that a certain rascal will decide to climb the  boxes and try to find said chips or crackers.
  4.  Don't worry if she finds the "wrong" crackers, she won't eat them.
  5. Beware if she finds the wrong crackers, they might end up sprinkled all over the floor.
  6. Decide that the least desirable foods will be the ones that could possibly be reached.
  7. If you see an orange smear on a white door, a certain kid might have engaged in rascal activities and somehow found the Doritos.
  8. Make sure that every human being living in your home knows that the chips and crackers are to be placed on the very top shelf.
(I know this happened when we moved, but I just got the pictures downloaded and I had to share!)

Friday, June 17, 2011

Lego Land!

4 What are your thoughts?
Today we got to enjoy the day with some really sweet friends from Iowa at Lego Land!

When we told Ellie that Sovines would be coming to visit us, she assured us she would scream with excitement when she saw them park in or driveway! She didn't scream loud, she just pretended to scream, and then was too shy and not sure what to do. Of course kids quickly get over their shyness and they were playing in no time! Ellie really enjoyed showing her new house. Nina was challenged to walk because there was no way she would be crawling behind! (That, and I think we are seeing the benefits of those knee immobilizers) I really think she used her walker most of the afternoon just around our house!

Sovines left after dinner to spend the night in Chicago, but we joined them today at Lego Land. If you have kids with special needs you know how challenging it can be to go to public places, even if they are created for kids, so we were not sure how well our girls would do. But at the end of our time there, we really did have a great time and so did all 3 little girls!

Nichole is not very social unless she knows the people she is with. She walked all over the place but did take some time to play with "blocks."



 Nichole and I then watched some kids playing at the play place. There were many kids and Nichole is very intimidated by older kids that really can knock her over easily, but she sure loved watching! And while she watched the kids, I just watched her. She is growing up quickly, for the first time today I did not see my baby. (Yes Amy, I did not see a baby anymore, can you believe it?)
 Nichole also had to hug every Lego sculpture. I tried to get her to give a hug to Mommy too, but she just said, "No mommy!"
 All my girls actually got on this ride. I rode with Nichole, and Ellie and Nina rode with their friends. I only got a picture of Ellie because I was standing in the wrong spot and no pictures turned out except the very last one as I ran to get better lighting!
 We watched the 4D Lego movies! Ellie loved it, Nina and Nichole were scared with the 3D glasses on! At some point Andy and I wondered if we would have to leave but once the glasses came off they were okay!

Here is Ellie waiting with her friends.


 Nina had really wanted to go play in the play place, but the older kids were wild and she was too concerned about keeping up with Ellie, which is not going to happen. She was content to find a corner and play blocks with me. Then she turned on her silliness and was making all sorts of silly faces "for the pictures mom."

Please don't mind the glasses. They were attacked by Nichole and we have to get them fixed!



 At the restaurant with her friends.
 Nina did incredible with her walker. She walked all morning. Did you get that? She walked all morning! I know some of you know just how incredible this is! Again, is this thanks to the knee immobilizers? The surgery? Who knows! But she was able to do this all morning! By lunch time, she needed to rest!
 Ellie saying goodbye to her best friend. I was actually sad as they said goodbye, Ellie really loves Brooklyn and her siblings. I bet Ellie talks about Brooklyn everyday and tells us how much she misses her.

We miss her family a lot too.
 Nichole did not last long in the car. She was out in just a few minutes after such an exciting day!

Quote of the day by Nina: "At the orphanage I never got to go anywhere, not even to a restaurant. Today I got to go to Lego Land AND a restaurant!" Now insert a little giggle.

Thursday, June 16, 2011

Knee Immobilizers

5 What are your thoughts?
 When we began to  look at different options to help with Nina's spasticity, one of the first things that we considered were knee immobilizers. These knee immobilizers are supposed to be worn at night while sleeping. However, as we looked at how spastic, or "tight" Nina was, we quickly realized that the knee immobilizers would be too difficult for her to handle. If you remember from the video I posted before her rhizotomy, stretching her leg to make it straight was very painful for her, and there was no way she could have worn these and tolerated them.

The day of her rhizotomy, Nina got her knee immobilizers delivered to the hospital room. Now that the tightness was gone, it was time to start breaking her in into these fancy contraptions.

We began putting them on just for short stretches of time during the day, but the best results are when they are worn all night long. A few days after the rhizotomy, we tried to have Nina wear them at night. She could not sleep.
Every hour she was up crying and winning. It was quite the ordeal. And since our family appreciates sleep, and we were living in the hospital room with her, we usually would take them off after having her wear them 3 to 4 hours at night.

As we talked to her therapists they encouraged us to have her wear these braces at least 3 to 4 hours every day. Having her take rest time or play with the iPad while she was wearing them. With our move and the business of life, getting the knee immobilizers on was only happening about 3 times a week.
Four days ago I was having one of those days where I was frustrated. Frustrated that Nina is able to physically do so much but emotionally and mentally she is stuck. So I did what some of us mommies of kids with special needs do, I asked another mommy whose son has had a rhizotomy if what Nina was doing (or not doing) was normal. Natalie then asked if we had tried knee immobilizers, to which I quickly responded yes but we were not doing those, because we appreciate sleep too much. She encouraged me and said it had taken her son a week to get used to them. Andy and I talked about this, and decided to give it a week.
We talked to Nina about the "bedtime braces" and why it was important for her to wear them. We said she was going to have to wear them every night until her body started to work better. Nina went to bed with the braces no problem, but just an hour after going to bed, she was up and crying. We did the crying and crying until about midnight, where we knew we had to make a choice. Do we keep doing this, or do we stay with it.

I took Nina to my room and explained that she was going to have to sleep with the braces. And that from now on she really was going to have to wear them and it was unacceptable to cry because she was waking everyone up. I gave her a choice: go to your room with your sisters and sleep on your bed, or have to sleep by yourself because you are crying. Of course she chose to go back. It was half an hour later that I heard a little whimper, and just as it came it stopped...she remembered the warning. And then she slept all night long! And for the last 4 days, Nina has been wearing her knee braces all night long! She has not cried, complained, or even woken up. That little stinker! She figured out we had given up before and she was going to try again! But she realized we were serious and that was that!

As you can see from the pictures, the knee immobilizers are big and probably not very comfy. Nina is a trooper! She is doing so well and she is taking it better than I ever could. Because to be honest I would be crying and whining not wanting to wear those and I would not care if I had to go have my own room for as long as I could tell you I was mad I had to wear these big bulky things!

Tuesday, June 14, 2011

Swimsuit Time~

17 What are your thoughts?
It's that time of the year again. Summer time when it gets hot and kids like to go swimming, which means that once again I have to wear a swimsuit and this is not my favorite thing to do. I mean, what woman...let me try again, what MOM likes to wear a swimsuit?

And when you have small children, it is not just modesty you have to worry about, but you have to stand in front of a mirror and bend, squat, and lean in unnatural ways to ensure that no body part will peek out to say hi. Because let's face it, when you have small children you do end up bending, squatting, and leaning in unusual ways. Either chasing a kid, saving them from going under water, or having them hold on to you for dear life!

Swimsuits, while there are some nice ones that cover what needs to be covered, most options fall into the "bikini" category. How, how did we go from little dresses to something that covers even less than underwear?



Maybe I am on to something, maybe I should start a new swimsuit company that targets moms. Then we can all wear cute little dresses that compliment our body and will for sure cover all the stretch marks and lose skin that quite frankly need to be covered. Okay, maybe you are not a mom that got any stretch marks after being pregnant, maybe you have a perfect body. But most of us do go through a body "transformation" after having children. Don't we? And really the last thing we want to do is go on and show most of our stretched skin, our wobbly parts, and our unflattering curves.

So I will venture to wear my tankini, that goes all the way to my waist and a cute little skirt. I don't care if someone calls it "old lady" because to some I might be old, after all I am 30 years old. I like it.

Ultimately, as a Christian, I believe that our bodies are a temple of the Holy Spirit and how we dress them does matter. What I teach my girls about how to dress does matter.

 But I want to hear your thoughts, because we all feel different about our swim wear.

Friday, June 10, 2011

Post-Rhizotomy Week 8

2 What are your thoughts?
Today marks eight weeks since Nina had her rhizotomy. It seems like it just happened yesterday and at the same time with so many changes in our lives it feels like it happened a long time ago.

Today I want to revisit the 4 main goals we had for Nina before the rhizotomy once we hit the 8 week mark.

1. Nina will stand for 15 seconds independently without upper extremity support.

We are not there yet. We are working on balance, but the longest we have gotten her to stand is 11 seconds. Now, that might sound pretty close to you, but the goal is for her to do this consistently. We can get her to do it for 3 seconds consistently, so we are not close to reaching this goal. Fear is getting on her way. She is terrified of falling and she does not know hot to fall. A fall for her can be very serious, so we actually started working on learning how to fall.

2.Nina will ambulate with reverse walker, demonstrating initial contact with her heel and knee extension throughout stance phase with minimal assistance at her pelvis.

I love the walker and yet I hate the walker. She can take really good steps with her walker...if we remind her to do it. For all other purposes the walker prevents her from walking "normally." For those of you that have kids with Cerebral Palsy, you know exactly what I mean. A walker can be a crutch and kids can use their upper body a lot more than their legs. Another thing to note is that Nina's hamstrings did not grow and they are too short, therefore initial heel contact right now is not an option, but she does some good flat foot contact, which we want to see rather than the toes.

3.Nina will sit in tailor sitting position for 10-15 seconds independently.



What about 30 minutes? yeah, she is doing so so so good with this one! And she begins to redirect herself when she is playing on the floor.

4.Nina will have 10-15 degree increase in her lower extremity range of motion."


She does! And it is incredible!

So as you can see, some goals she has done very well with, others we are still working on.

Nina is actually able to walk on her knees, which she could not do before her surgery. This is so good for her. She is beginning to stand using only one hand from a half kneel and she is also doing okay walking holding on to us with just one hand!

Today I asked the Physical Therapist if she though Nina could benefit from using arm crutches. She responded that of she is not walking independently in 2 weeks we will look into that. Her surprise really surprised me, Nina walking independently in 2 weeks? The PT really feels Nina is not walking because of fear, which is what I have always felt. She says Nina is very strong and she can physically do it, we just need to get her to actually do it.

Nina is so close! So very close! She just needs to want to do it, she needs to brave it out and say, "You know, I am just going to give it a try!"

I will update again in 2 weeks, let's see where Nina is at 10 weeks post-rhizotmy!

Thursday, June 9, 2011

Our New House

7 What are your thoughts?
Can I start a blog post with a prayer request? We still have not sold our house in Iowa, so if you think about us, please pray that our home sells quickly. We know that there is someone out there that will love our house as much as we did!

But on to the reason for this post. Some people have asked , "How do you like your new home?" And the simple answer is, "We love it!"

When we began looking at homes, our intention was to rent, because really, who wants to have two mortgages?  We had no luck finding a handicap accessible or a first floor apartment. Looking for a rental home turned out to be tricky and expensive as well. As a matter of fact, the few homes that we found that could work for us were too expensive. But we do have 2 kids with special needs, and their safety is a priority, along with accessibility using a wheelchair or a walker.

And so we found our new home. It is a ranch style home and has a lot of open space. Nina can use her walker freely. All the floors have hardwood or tile. The back yard is fenced in and we have a partially finished basement. All these little details make this house just great for our family and for our needs. And according to Ellie the best part is that we have a fireplace, so that in cold winter days she can cuddle by the fire, drinking hot chocolate, and wrapped in a blanket...yeah...the romanticism of it all...she is my daughter.

The location is just fantastic too! We have everything we need close to us and we are loving it!

There is a park a block from our house and it seems to be a great neighborhood.

I will take pictures as soon as I find my camera.

Wednesday, June 8, 2011

Book Review: Save Your Marriage in Five Minutes a Day

0 What are your thoughts?
Save Your Marriage in Five Minutes a Day
By
Bonnie Jacobsen
Save Your Marriage In Five Minutes a Day is a practical book with advice on how to make the best out of ordinary, everyday interactions. Sometimes life becomes a boring routine, and the spark of marriage can be snuffed out by the everyday of making meals, caring for children, and tolerating our jobs.


In this book, there are practical ways in which one can make an ordinary situation, something a little bit less ordinary. How a simple shoulder squeeze can make a difference, or how the tone of voice can change a response. These are simple, reasonable things that anyone can do, and that really do make a difference, and can help a marriage stay strong.

As practical as this book is, I found a significant downfall. Each practical suggestion is accompanied by a scenario where a husband and wife interact. The scenarios are common, situations that you can see happening, but the interactions between husband and wife? I found them to be unrealistic. In every scenario, one spouse seemed to be a collected therapist, in situations where most people would be hurt. In fact, I personally do not know of a couple that would really interact in such a way, not when emotions and hurt feelings are in the mix.

I recieved this book for free by Booksneeze.com in exchange for my honest review.

Book Review: God Gave Us Two

0 What are your thoughts?
God Gave us Two
By
Lisa Tawn Bergren

This children's book is part of the continuing story of little cub, as she is now going to become a big sister. A heartwarming story where Mama and Papa Bear help Little Bear see how to celebrate being a big sister. Just like God gave them little bear, now God was sending them another blessing for the family, one in which little bear gets to participate.

Mama Bear's tummy keeps getting bigger as time goes by, and her lap is getting smaller. Finally, the day comes when grandma and grandpa bear come and stay with little cub while mama and papa go to the hospital. A great surprise awaits little cub when mama bear and papa bear show up not with one, but two baby cubs.

The illustrations by Laura Bryant are beautiful, and the story is cute.

When my oldest was going to become a big sister, we looked for books that would help her understand and prepare her for her role as a big sister. I would not necessarily recommend this book over any of the other books that we have. Same story, same message.

My girls liked the story, although they were very confused about weather little cub was a boy or a girl.

You can click here for additional book details.

I received this book for free by the publisher in exchange for my honest review.

Thursday, June 2, 2011

Selective Dorzal Rhizotomy: Choosing Mayo Clinic

3 What are your thoughts?
When we chose to have Nina's Rhizotomy done at Mayo Clinic, we had a few people ask us why we were not going to St. Louis Children's Hospital. If you do a google search on Selective Dorsal Rhizotomies, it is very likely that Dr. Park will come up in your search. As a matter of fact, when I began to connect with other families that had their children have this surgery, all of them but one had gone to St. Louis to have Dr. Parks do the surgery. He is that good!

So what is it about Dr. Park that make people go to St. Louis? For instance, he probably does the largest number of SDR's. With a large number of kids having the same surgery, you get to see a bigger number of positive post rhizotomy outcomes. Because they do so many rhizotomies, they know how to work with insurance! Word of mouth from other parents is powerful! The type of rhizotomy that Dr. Park developed is unique as it is the least intrusive type of rhizotomy there is, which makes recovery easier.

So why did we chose Mayo?

Mayo Clinic has a team approach.  Nina's Pediatric Rehabilitation Doctor, her Physical Therapist, Occupational Therapist, Orthopedic Surgeon, Neurologist, and Neurosurgeon were all involved. We talked to all of them in regards to the SDR, they all collaborated and studied her gait analysis together and each one of them took time to look at the results and at Nina from their own area of expertise. I love that! There is no one man show but rather a group of people coming together and saying, "What can we do here to help" and the reasurrance and confidence in the team approach is something that we really valued.

Dr. Wetjen, does the exact same SDR as Dr. Park. Smaller incision, and shorter recovery.

There are some advantages to being "The Mayo Clinic." I am amazed at how quickly things were set up for Nina. From the gait analysis to getting a wheelchair.

Again, it is Mayo Clinic and they know how to deal with insurance companies. There is also a reason why there are so many people that are able to come from all over the world.

The results are just as good as with Dr. Park. If you look at the number of surgeries that Dr. Park has performed and look at the positive outcome, you will find that Mayo has the same comparable results.

What we liked better at Mayo Clinic.

For us it was the convenience of being closer to home.

We love the team approach. When you walk into Mayo clinic you end up working with a team.

Recovery. (I believe this is pretty significant). I spoke to about 8 parents and they all described the following 2 days after the rhizotomy to be very traumatic. There were a few parents describing their children as having severe muscle spasm, the kids writhing in pain, and screams and tears. I WAS SCARED! I talked to Nina's team about this and they said this is where Mayo does things different. Pain management pre and post rhizotomy is top notch! Nina was on a medication that although made her highly emotional, it really helped with the pain! After the surgery she had a "pain management team" an epidural and several meds in hand to make her comfortable. While it was hard post-surgery, Nina complained mostly about the catheter and about the IV's. We dealt with very little pain and the one time that we needed extra meds, it was taken care of right away. This surgery was a lot easier than her tonsils hands down!

Rehabilitation. The rehabilitation unit at Mayo clinic was the most caring staff I have ever met! We loved the rehab unit! The nurses and Patient Care Assistants went above and beyond what we expected! Nina had a nurse and a PCA at all times. They cared for Nina and for us so well! From doing our laundry to bringing us coffee, these people were incredible. I cannot say anything but good things about the time at the rehab center! Two weeks of intense therapy made easy by these incredibly dedicated staff. The therapists and doctors were superb! Team approach all the way through with a lot of caring and a lot of supporting.

Why chose Mayo Clinic? I would not do it any other way!

As a disclosure, Mayo did not ask me to write this post. I wanted to share our experience with Nina's Rhizotomy, and I would highly recommend Mayo clinic based on our experience!

Here are a couple of links from the Mayo site:
-Neurosurgery
-Pediatric Rehabilitation Program
-Cerebral Palsy

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