Reese Turnipseed

2011-11-15T15:32:00.000-08:00

She likes to call this rocking out. These are the bars that we put up in our house for her to move around. She uses them some ... particularly to 'rock out'. I had to post of FB the other day what she said..."mom, I had a dream last night. I was at school, and I crossed my arms like this, and I walked out of my walker". ugh. So, sweet! I told her that I have had the same dream! Some dreams come true! We will keep hoping and praying!

2011-10-24T21:51:00.000-07:00

It's the little things that count! There are a few things that stand out about these pictures...1 - MILESTONES. YAY! She has graduated to the big girl swing. Do you have any idea how tired we were of the baby swing? - very!). So, she loves swinging on the big girl swing, and SHE CAN PUMP all by herself! Agh!! So cool! Another thing to notice about the pics - I CAN TAKE them (and I am not holding her)...meaning, I am NOT IN the picture and she is not on her knees. This is also a milestone of sorts. In the last year, Reese has become strong enough to do more things... ALL by herself. I mean, not too many, and very thought out activities, such as the jeep. BUT, I WILL TAKE IT!! This is FREEDOM for Reese (and me). She is also still LOVING her donated tricycle...she rode it to the park to swing, and back...mostly, all by herself!

We have also gotten into doing activities again lately. Swimming and adaptive sports (though I am still on the field with her), she DOES think she can play soccer now. And, thank you Ann, from Starfish swim school, for reaching out! Reese's swim teacher thinks she may be able to swim! He says it's all about balance IN the water. While this may be challenging outside of the water - she CAN float on her back ALL BY HERSELF. All of this is an amazing reminder how important these activities are to build children's confidence and to 'getting involved' in the world! It is easy to feel isolated in our world. But, we are coming back to the world! Now we just need to get her back on the horse!

And finally, I just want to say how thankful I am for Reese to have friends and relationships! She loves her friends (and they love her), and this IS one of our newer activities that has brought us such happiness and laughter!

School is also still going fantastic! Writing is VERY difficult because of her dystonia, but SHE CAN form letters...though not pretty...SHE CAN FORM LETTERS!! SO PROUD! She is the super star this week at school - she REALLY is a super star!

XO to Reese, friends and family!

2011-10-03T20:34:00.000-07:00

Reese's walker was taken from our driveway this past Saturday. UGH! So annoying, sickening and frustrating. Well, Tim and Mandy Moore saw this story on 9 news and donated their son, Brody's, old walker, to Reese, to use, until we get a new one for her. Thank you Tim, Mandy, Brody and Tatum! We are SO THANKFUL! There were many people that reached out, and offered to help - thank you for being so thoughtful.

Besides this, not too much new. OH, no thats not true! We did go to Pennsylvania to the Clinic for Special Children for Reese's annual appointment AND to go to their annual auction. Of course, the appointment was great! Dr. Strauss and the clinic is amazing! They said Reese looks great and we are trying to change up her formula/medicine. And the auction was facsinating. 8000 people - a lot amish - as ga1 is common in the amish community. There must have been 100 horses and carriages and Dr. Strauss was right - peanut butter whoopi pie - delicious!!

Kindergarten is still going great!

Next on our list - adapt this house, or get a ranch house. My arms are tired! Will that really help or change though? I will still be lifting a lot...I think I am just hoping that maybe it would be a little less...and therefore, arms a little less tired.

We are all good though. I feel like we are settled in to our life right now - minus our perfect walker. Of course, now that it is gone, I realize how perfect her walker was - and how much we used it! ugh.

2011-08-20T10:16:00.000-07:00

SUMMER 2011 - 5 years old! New bike. Cousins. The beach. Kindergarten.

2011-08-20T06:27:00.000-07:00

Summer 2011 -

What can I say? It's been a long 5 years and we have learned A LOT! Probably more than we have ever wished. Reese continues to be an amazing little girl, with a spirit about her that is truly unbelievable. One would think that her physical disability would dampen this - but, it may be the reason she has the spirit that she has and the amazing outlook that she does. She has had to make adaptations to the world that most of us (me included), would never know how or what to do with. She has done this with grace, courage and determination - all while constantly smiling, laughing and loving every minute of life.

This last year has been an incredible learning lesson. Balance. Acceptance. Slowing down and doing what we can. Not trying to keep up, or be frustrated with what we can't do. Taking a break from things we don't want to do. And remembering that we may have to do things differently and that we may have to do things that we may not want to do.

So, what have we done? Well, sort of not much, but maybe a lot bc of making emotional decisions about what to do / what not to do? We have taken a break from therapies. We take SLOW walks around the block pushing a way too expensive baby stroller. We have installed railings in our house. We have learned to create and enjoy activities that we wouldn't have thought of (summer sledding). We received an adaptive bike from 2 angels foundation. We have purchased a bike to allow the whole family (yes, Georgia too) to go on a fun ride. We have had more play dates - which is a joy! And, Reese turned 5 and started kindergarten. agh!

So, new milestones of sorts...but also just continued acceptance, adaptations and love and joy, no matter how hard it is. But, I have to say - it IS hard. I don't know if I can say it has gotten any easier. My cousin asked me this, and it was a hard question to answer. In some ways, yes. She has more words and can speak more clearly (I think). She can move around in her own way better than she has ever been able to. She can play more easily by herself. And she can play with friends! These things have certainly made it a bit easier. But, she is also getting heavier, and my arms are back get tired and strained.

But, thank goodness for family helping out! Reese loves everyone! But, especially her grandparents (and her aunties...of course)! We couldn't do it without everyone's love and support. So, thank you! xo

Will keep you updated to how Kindergarten is going. She is going to Bromwell. They have a program for kids with physical disabilities. So, I am thrilled about this. But, it is still hard to leave her knowing how much help she needs doing so many things. But, I love that I was most nervous about PE, and guess what her favorite class is? Yep - PE. So, what do I know?

2011-06-02T20:17:00.000-07:00

TRANSLATION: "Thank you for coming to the benefit! Thank you for your love and care! We raised $12,000! Woo hoo! Bye. Love you. "

2011-04-03T21:09:00.000-07:00

MAY 26th - 2ND ANNUAL GA1 FUNDRAISER @ Cervantes - the other side 7 to 12
Donate as you wish - All proceeds go to the clinic for special children. Also, silent auction!

Watch this video on the clinic for special children -

http://www.youtube.com/watch?v=4qAUy6oYH8M

I asked Dr. Strauss (Reese's doctor at the clinic) what their goals are for money raised through fund raising?
Here is his answer:

"The most important short and long range goal is to build a "Research and Endowment Fund." We do not rely on federal grants here because these do not generally flow to "rare" diseases, and they end up being quite restrictive in scope. Thus, we are trying to build a Fund that will be used to generate annual income from interest (about 4% annually) to support clinical research into rare disorders, especially GA1 and MSUD, the two most common problems we see here the Clinic. For this fund, we are driving to a goal of 5 million dollars over 5 years (1 million per year). The final goal (5 million) would generate about 200K in annual research income, which is about what we need at this time. The short range goal is for "exome sequencing", and new DNA analysis technology that will greatly improve our ability to diagnose genetic disorders and will also give us the ability to study things like "modifying genes" in GA1. We hope to purchase an Ion Torrent "Personal Genome Machine" for this purpose (you can check this out online). F&M College is funding 55K of the total cost, which is 100K, and we are seeking 45K of matching funds from other Clinic supporters".

Go HERE to donate to the Clinic for Special Children online.
Or, make check to: the clinic for special children

and send it to us - and we will send it on.
591 South University Blvd. Denver, CO 80209

THANK YOU! THANK YOU! THANK YOU!

2011-04-03T20:56:00.000-07:00

4 and 1/2 years after diagnosis...accepting what is! (Jason and me - that is). Reese will always be physically challenged. But, her attitude, spirit and determination will carry her through! She will do whatever she wants, irrelevant of these challenges. And Jason and I will continue to try to have as much strength and courage as Reese does! She will teach us about the unknown territory that we are scared of - and that she is fearless about! Updates : considering getting a power wheel chair (BUT NOT A MINI VAN), Kindergarten (inclusive phsycial disability program) starting in the fall, adaptive skiing with a walker ski and PLAY DATES!! And a break from therapies.

2011-04-03T20:28:00.000-07:00

walking?...hmmm

2010-12-30T21:34:00.000-08:00

Dec. 30, 2010 - We moved back to Denver only after being in Michigan for a few months. It was worth a try - we learned a lot, met good people (including another family with a kiddo with ga1), and enjoyed Grand Rapids. We are happy to be back home in Denver...where we will continue our therapies. Reese is doing great! Talking up a storm, playing Wii and telling friends that Georgia has GA1 too, "that's why she can't walk" is what she tells them. hmmm.... Reese is also using her wheel chair for the first time. It is a freedom for us both that is hard to explain in words. It is hard to see her in a chair at times (but just plain cute most of the time...), but if Michigan taught me one thing - to be thankful for what Reese CAN do!!

2010-10-26T21:45:00.001-07:00

So, we have moved to Grand Rapids, MI so that Reese can go to Conductive Learning Center. You can see pictures from CLC from the summer at an older post below. This time, had to post some Grand Rapids fun pics. Of course, we went to a high school football game! And in the next picture, Reese is with some of her big girl friends from school, maddie and savanah. Madison (on the left) has GA1. Amazing girl, incredible story and the most wonderful spirit! Thanks to Maddie and Savanah for all of the joy and good laughs! xo

2010-08-11T06:15:00.000-07:00

CONDUCTIVE ED.
Grand Rapids, MI
SUMMER 2010

2010-07-19T11:52:00.001-07:00

CAMP - VERY COOL!! So, Reese started camp at Conductive Learning Center in Michigan a week ago. It is pretty amazing. It is a camp for children with physical disabilities. Some children are more 'affected' than others. Some can talk just fine, some cannot talk at all. But, all of the kids are aware of what is going on.

There are 10 kids in her class, with 3 trained 'conductor' teachers. Then there are always a few extra 'assistants' helping, as, many hands needed to help. But, they still do an amazing job.

The kids all sit on wooden chairs, with their feet flat on a wooden box, at a wood slated table. Every single piece of equipment is with purpose. The chair and foot rest is for posture and positioning (to strengthen as sitting). For all of the kids, they are working when sitting, as it is a task to help strengthen their core. Some kids are able to sit on their own, some are not. The slats on the table are for the children to hold on to something if needed. The teacher teaches to the children, getting their attention with a 'pirate' theme - singing songs, learning about what floats/sinks, patterning, etc.

Then, comes the 'line time'. The first of many 'exercises' to work on coordination, strengthening, crossing midline etc. So, they have to pull themselves up onto the table, laying on the table on their stomachs. There is a ball in front of them. They have to reach for the ball, put in behind their back, and hold on to it, while lifting the ball up and down. It's almost like a pilates workout. They continue to do many more workouts - rolling from side side, rolling over, and more.

The rest of the day involves more exercises - walk to the hallway with group of kids (can take 30 minutes). Sitting against the wall, sitting and moving legs up and down, walking along the wall, or up a stairwell.

The cutest thing about the whole thing is how they do it together. I love that Reese can look around the room and feel like everyone is working on similar tasks. There is also some amount of peer pressure. They look at each other to see what the others are doing. But the best is when they try to help each other - when really they can barely do the task themselves.

The last part of the day is working on hand coordination at the table, by doing a craft project. So, they will warm up their hands while sitting at the table by singing 'where is thumbkin', or holding on to a ball and opening and closing their hands. These tasks are simple, and yet so hard for these kids.

I wish we would have found Conductive Learning sooner, but I feel blessed to have found it (thanks Ali & Jason). And then its just a nice bonus to come back to Pa and Mar's place and go to the beach and be on 'vacation' at the same time!!

Progress ? Time will tell. I used to hate this term when they told me it a few years ago. But, I am learning to understand what it really means. At camp, they are working with her to use 3 pronged crutches. This is very hard for her because of her challenges with balance. But, no matter what, practice and strengthening exercises will only make her stronger and her movements more coordinated. And with that, her determination and will - we shall see!

2010-04-20T19:46:00.000-07:00

Reese is doing great! We went to California a month ago, for a doctors appointment. And while there, we visited her cousins, and went to Disneyland. She had a blast (at least until she did the roller coaster & until Pluto terrified her).

In the last week, Reese started at "mom's school" (and she also still goes to her school) - Children's garden and Sewall. She loves them both!

We tried some medicine (artane) for her dystonia, but it did not really work.

We are considering trying a wheel chair (again). The 'mobility' issue is tricky. Reese is continuing to great with her walker! But the chair would be another option when she does not want to do her walker (and her mom doesn't want to hold her). So, we will see.

We have gotten to a point where she asks why she cannot walk. Though, in the same sentence, she also asks what she can have to eat? So, I am not sure she really cares about the answer.

I continue to count my blessings how incredible Reese's attitude is. She is always happy and tries to do everything, no matter her limitations! It's amazing! She is amazing.

2010-01-26T19:54:00.000-08:00

Reese loves beautiful dresses. She picked this one out all by herself, from the store, and her closet. She also picked the butterfly t-shirt to go underneath and of course, the ruby red slippers.

Reese is doing great! She is talking a lot more (though her daddy often reminds her that he thinks she has used all of her words for the day). We have checked some things off my list of 'milestones'. I have to say, it felt really good to make some changes and fulfill some milestones.

Toileting - CHECK!

Big girl bed - kind of check. Big girl bed too big...oops. She can't get in or out, oh well. Some day she will. For now, she can just be the princess that she is, stuck in her bed that is too high.

Bottle - no check. Though, I was told by the docs that the bottle can stay for a while longer b/c it is important for her to get her formula. He promised me she would not drink from a bottle her whole life.

So, that's about all...except for thinking about taking Reese to Ability Camp in Canada. It helps that Auntie Ali would be only a few hours away. The camp is a 5 week intensive therapy camp.

2009-12-23T04:35:00.000-08:00

Toileting going great! I am so excited and relieved that I can take this off my 'list' of things to work on with her.

2009-12-02T10:48:00.000-08:00

A few updates.

1) ADAMS CAMP - Reese did Adam's Camp for a second time about a month ago. It can be hard for me to see progress, since I am with her every day. But, a therapist who was at the first & second Adam's Camp said that Reese has gotten much more stable and stronger. I do know this is true. She can sit on a chair a little better. She can pull herself up to furniture. She can even get into a small toddler chair (something my brother saw this past weekend when he was visiting and couldn't believe it).

2) SCHOOL/OTHER - Reese coutinues to love school. And they say she is using her walker a lot more at school and even able to keep up with the other kids better than at the begninng of the year. We need to use it more outside of school and at home, but it is challenging for us to use it as much as we should at home for many different reasons, putting the braces on, small spaces, corners, stairs, and just not wanting to do it for 'mom'. But, this is something 'on my list'.

Other things on my list: getting her off her 'bottle' (although complicated, b/c this is where she gets a lot of her nutrition/and she wont drink it from a cup). And of course, toileting is on my list. She is aware of what she is doing, and has peed on the potty, but, the physcial challenges on top of the whole process makes this a little harder.

One more challenge that I am trying to figure out is Reese's peer relationships. Understandably, social relationships can be hard as Reese cannot keep up physically and her speech is delayed. I will try to be patient and work with the other kids and parents, but it is hard to not just want to get angry and sad. We will get through it - but an issue that I hadn't thought about much. aghh..

3) 1st ANNUAL GA1 FUNDRAISER. We had a Fundraiser on Friday night. A friend donated the music venue, and 2 friends offered to play some music and then our friends donated as they pleased at the door. We raised $1800, which will go to the clinic for special children in Lancaster, PA. It was lots of fun!

2009-11-04T06:30:00.000-08:00

we went trick or treating at old south gaylord. I was sweating making sure she wasn't running any body over in her walker. But, she had no problems. She walked the whole block, and back again. And even told the candy distributers 'more' every time she got candy. I had to remind her to move on.

2009-11-04T06:28:00.000-08:00

I CAN STAND! (Be it against a tree...). But, it's a start and, it must mean we are getting closer?

2009-04-02T17:05:00.000-07:00

Reese had a blast at Adam's Camp! It is an intensive therapy camp in Denver. She went for one week and had back to back therapies (PT, OT, Speech & music therapy) 3 hours/day. It was a fantastic experience for us all. We met great therapists, nice families and just had fun, which was our ultimate goal. She is getting stronger and stronger every day.

2009-02-10T12:16:00.001-08:00

August '08 - KIDWALK

2009-02-10T06:01:00.000-08:00

February '09 - Press play to watch Reese walking.

2009-02-09T10:33:00.000-08:00

August 2008, Reese tries her new wheelchair.

2009-02-08T20:42:00.000-08:00

I have been meaning to do this blog for a long time. We have a child with special needs. It is something you never think would happen to you. It happened to us. As a result, my experience as a mom is very different than I ever imagined, Jason's as a dad, ours as a family, and of course, and most importantly, Reese's experience as a child. It has been really hard. We have done our fair share of crying and getting angry, but to make up for that, we put in extra time to smile, laugh and have fun. We do what we do because we can't imagine doing it any differently. We have been blessed with Reese, who is amazing, and who will do amazing things, as she already has. This blog is to allow you to follow her incredible journey. We do many therapies: hippotherapy, PT, OT & Speech. In 2 1/2 years, she has already made such incredible accomplishments as a result of her determination and effort. I am happy and proud to share our story. While others may look at us and wonder how we do it, I consider us to be quite blessed. Many other people struggle with a lot more than we do. So, we count our blessings and work as hard as we can (and we are very grateful for the breaks that we can take because of the love and support from our family).

2009-02-08T12:55:00.000-08:00

Press Play to watch Reese riding.

Reese & Miracle
Hippo Therapy
June 2008
Santa Barbara, CA