Walking In Wynters Wonderland- Life With OFD14

09/05/2025

Ohio has been great to us! The Ronald mcdonald house is Absolutley the best out of the 3 we’ve been too. So much to do (and we can eat in our room! If you know you know)

The Pulmonary Doctor and The Plastic Surgeon had the best bed side manners. They explained everything so well that I had little to no questions! We come back in 3 months for a scope of all airways, a CT Scan, Botox saliva injections and a visit with Genetics. There looking to see about the possibility of tongue reconstruction or jaw surgery or even both. But, that would be known after that surgery they also would like to look at a sleep study after all of this.

So more fundraiser coming your way for travel. But, there very enthusiastic about being able to help her.

09/01/2025

2 days until we leave 😳 thank you so much for the shares and support!

Hi, my name is Kristen Lewis. And we are trying to raise funds for m… Kristen Lewis needs your support for Support Wynter's Path to a Ventilator-Free Life

08/24/2025

9 days until we head to children’s of Alabama for an appointment. We will stay the night and head to children’s of Cincinnati the next day. So excited and nervous to see what all the doctors say. Between the three teams. Praying for answers and an easy plan.

Hi, my name is Kristen Lewis. And we are trying to raise funds for m… Kristen Lewis needs your support for Support Wynter's Path to a Ventilator-Free Life

08/22/2025

Just Like that Tomorrow she is 6 years old. Time is flying by 😭😩❤️

Check out this Gift List I just created. https://www.amazon.com/registries/gl/guest-view/1UC3UZ2U3RR8H?ref_=cm_sw_r_apin_ggr-subnav-share_3KE8TC90VEKB4CS8A7ME&language=en-US

07/27/2025

26 days until Winnie is “6”
She loves cows, music, her Cocomelon laptop, remotes, phones, tablets, chip bags that haven’t been open. Pretty much anything that’s not a toy.

We decided to not do a big birthday this year because we have two big Medical trips. One to Ohio two weeks after her birthday. And then to Orlando for a week for intensive therapy in november. Not counting the week we have in Birmingham two days after we get back from Ohio. And whatever Ohio decides on us coming back.

So her birthday list this year will not be full of toys. But more things she needs along with some fun.

https://www.amazon.com/hz/wishlist/ls/2VD8IJPVA9ULK?ref_=wl_share

07/23/2025

I wanted to send a special thank you to everyone that has donated this far! Every cent is a blessing! We can now pay for one of the appointments and we have also started on the 2nd of the 3.

Sarah and Bobby Smith $200
Shannon $100
Denise and Chops Gay $100
Dixie Westbrook $25
Mallory Hayes $30
Jasmine Caldwell $10
Smantha Brasher $20
Jasmine Roberts $25
Lauren DeSantis $25
Alicia Rainer $25
Misti Staley (freeArm) $50
Thank you so much!

Hi, my name is Kristen Lewis. And we are trying to raise funds for m… Kristen Lewis needs your support for Support Wynter's Path to a Ventilator-Free Life

07/18/2025

Thank you for the donations this far! The balance for plastic surgery out of pocket is 451.35 after they gave a 433.65 discount we are waiting on the other two to come in but, it will be around the same. This is out of pocket but, it is needed!

Hi, my name is Kristen Lewis. And we are trying to raise funds for my y… Kristen Lewis needs your support for Support Wynter's Path to a Ventilator-Free Life

07/14/2025

Hello Family and Friends! We have recently been given an appointment with Children's of Cincinnati in Ohio. We will be seeing pulmonary, plastic surgery, and ENT specialists. This trip is over 10 hours away (without stops), so we will be staying up there the night before to make it to the appointments on time.

Our goal there is to get a game plan on surgeries to help get her off the ventilator and even her trach. We are told there is a possibility of jaw surgery, tongue surgery, and airway surgery. But we will know more after these three teams evaluate her.

We will be there at the very beginning of September. Anything and everything will help with travel expenses. Thank you and so much Love!

Hi, my name is Kristen Lewis. And we are trying to raise funds for my y… Kristen Lewis needs your support for Support Wynter's Path to a Ventilator-Free Life

06/12/2025

Hello Friends! We have two big trips coming up one in november (Orlando week of intensive) the other being Cincinnati Children’s Hospital we are hoping for February, but could be sooner depending on availability.

That being said, I decided to have someone design this art with my specifications. As a great way to get a cute T-shirt, mug, etc. And it be directly printed and shipped from the website to make it easier on us. Thank you so much as always for your love and support.

-Wynters Mom

https://wynterwonderland.printify.me/?fbclid=IwQ0xDSwK3skpleHRuA2FlbQIxMQABHsb4WOxRv187eeaJMnZ_7V3MiO1gf0bj3NamlT09fuNokSVjqGpBnLaXBL5K_aem_3GcSIM-DRN31hJgkB9N5Dw

06/04/2025

Haven’t updated in awhile so figured while I only have Wynter this week I’d do that.

Wynter is so close to taking her first steps. We go to Birmingham Monday for Gait lab where they will take videos of her Waking and then take molds of her feet/legs for new braces and shoes with wedges better suited for her than ever before.

She also seen endocrinology yesterday where she got her Official Diagnosis of HYPOTHYROIDISM (copy and pasted so thats why its all capital) A condition in which the thyroid gland doesn't produce enough thyroid hormone. We are currently waiting on insurance to approve the new medication as shes allergic to milk and needed a specific kind of hormone replacement.

We completed the 5 days of intensive therapy in south carolina and came home with some great tools in which we will hope insurance will supply or we can find second hand. That has us at 20 days of intensives this year with 5 more to go in Orlando. I’m currently looking into a online class with a different therapy I can learn and do that focuses mainly on cerebral palsy.

She will also see her alergist Friday in birmingham. In which we will see about trying something else for her severe allergies that are pretty crippling for her. Twice this week shes mainly slept due to how bad they are her asthma defiantly doesn’t help. But, Allegra, Zyzal, Zyrtec, and Claritin did little to nothing even on the higher doses they tried.

Other than that she has already Enjoyed Vent camp and is going to be thrilled to see her Marine (oldest brother for 2 weeks soon!) we haven’t seen him since the first week of january. We have also decided to not have a huge birthday this year and take her to the Aquarium and cabage patch land since shes now getting into imagination play with her stuffed toys. Shes huge on music and dancing!

We are currently in search of a rabbit stander if anyone sees or has one.

03/12/2025

Officially received another diagnosis and specialists to Wynters list officially today. Now to do all the research because it could be the cause of so many things going on for years.

Goes to show research, Requesting certain Bloodtests, and Advocating for those that can’t is key! Because just telling all her symptoms with out a lead to what it was only got us no where.

Thankfully her kidney doctor Tested at my request though it was nothing to do with kidneys.

03/07/2025

Therapy is officially over! 3 weeks 5 days a week. Four days of intensive physical therapy, and two days of occupational therapy a week.
I said I would share the list of Tools that will Work well for Wynter and strengthen her With the given Exercise we have for home. These may not be for All as all kiddos are on different paths but, some will.

We have two more intensives this year in other States all the travel and physical pain of moving everything back and forth for these are worth it. Getting her more independent is the Goal. No matter what that may look like for her.

If you want to get something off her List it will be more than helpful in her development and We thank you so much!

https://www.amazon.com/hz/wishlist/ls/LHY1E0SRA001?ref_=wl_share