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Warning, This is going to be a long post. Also Trigger Alert We took Faith to Pittsburgh on Thursday and Friday for some regular follow up visits, a BAHA hearing aid fitting as well as Pre-Op surgery clearance. The surgery is for her eyes due to strabismus with esotropia (which means her eyes are crossed but only one eye turns in at a time, not both at once) So I’ll start from the top. She was fitted for her hearing aid and as you seen in the previous post, it went well. What we did learn is that Faith should only need this type of hearing aid and not a permanent one that’s implanted behind her ear. As she grows her hearing should get better as her ear canals widen. So good news. She also got a CT scan of her ears to make sure there is nothing physically affecting her hearing such as blockages or fluid or wax....we are waiting for the results on this. We saw her cardiologist who was very pleased that her heart has remained stable. She still has the small vsd (hole in her heart) but this is not causing any issues or affecting her in any way other than when she gets sick she has a harder time getting over the colds. So Faith graduated to one year visits!! He was very pleased that Faith has exceeded his expectations! So yay! Good news! We saw her eye doctor who measured her eyes once more to make sure the surgery was necessary and would be effective. Yes to both of those. Even though the inner muscle pulls her eyes inwards alternately, her vision itself is fine. So she can have her hey surgery! Yay! Good news! Okay so there’s all the good news. While we were down there Faith needed to have a screening abdominal ultrasound to check her kidneys. Children with Trisomy 18 are at higher risk of developing Wilms Tumor which is a type of kidney cancer. We received these results on Friday The ultrasound showed multiple lesions on her left kidney (nephroblastomas) as well as a 2.2cm mass (the size of a ping pong ball). It also showed she has gallstones too. So an ultrasound is like looking at a black and white tv through a fish bowl. This does not give the drs a full view of how much her left kidney is affected. So we are going down for an MRI to look at her left kidney and get a better idea of what’s going on. Then they are going to try and do a biopsy while she is having her eye surgery. Then once we get a better idea of what’s going on she may be receiving some “soft” chemotherapy which is the lightest stuff they can give her, easy on her heart as well as her immune system. Or She will receive “soft “ chemo and possibly have an operation to remove a part of or her whole kidney. This is depending on the MRI results as well as the biopsy. We need to move fast. We are going to wage war. These lesions and this mass are ticking time bombs. It is not a matter of “if” it will turn to cancer, it is a matter of when and how bad, but remember, at this moment, it is not cancer, yet. The chemo will act as a weed killer in a sense, by killing these nephroblastomas (the weeds) before they grow into a bigger problem and spread. This will be a week by week and at times a day by day process. This is not going to be something that is going away quickly, it’s going to take time and patience, but most of all...it’s going to take prayer. So what I’m asking of all of you is to do what you’ve been doing all along.... pray. If Faith has taught us anything it’s that when we come together as one, United, there is Power in Prayer and she is proof of this! I don’t want you to feel sad. I don’t want you to feel bad. I don’t want you to feel sorry. I want you to feel strong I want you to feel the strength of the Holy Spirit coursing through your veins as you pray. I want you to feel the power and the hope of Jesus Christ in your heart. She is not just my Faith, she is OUR FAITH! We are going to keep moving forward, we are not giving up! And Faith is going to keep doing what she’s always done, Defy the Odds and Prove that there really is Power in Prayer cause that’s how she rolls! So pray folks and pray hard, put your hearts into it cause this little girl is living off of YOUR PRAYERS and YOUR LOVE! Thank you for all your support and your faith in Faith❤️

She will be having her surgery the week of Labor Day!! Yea!! I can’t wait for her to see things correctly again!!

She just had her heart ultrasound & the dr said she could have her eye surgery as long as the anesthesiologist is ok with it. So she will no longer be cross eyed In a few weeks!! That is the best b-day news I could get!! Yea!! We have been waiting & 🙏🏻 for those words for 6 months!! 🙏🏻❤️🙏🏻 😁☺️🥳

Faith got her Colear hearing aid this morning.

Update on Faith Marie, she had an appt at CHP today. Turned into a full day for them, but we all have answers now! This is what Brandi told us...... Eye check up at 9 am. It was decided at this appt that Faith needed to see the eye dr due to “pulling” in her right and left eye, significant pulling in the right. Eye dr appt was scheduled for same day at 1230. She was diagnosed with strabismus, esotopia. Glasses will not help the situation, she needs surgery in both eyes, scheduled in September pending, must discuss with heart dr first. She was scheduled for hearing check up at 11 am She failed initial hearing test and was rescheduled for same day Natural ABR. She slept on me with the leads on her head and an ear piece in her ear that sent sounds in her ear to monitor how her brain responded. She was found to have normal hearing in certain tones but has moderate hearing loss in others. She has hearing loss due to small ear canals but also hearing loss was noted at the auditory nerve. Due to small ear canals and her auditory nerve showing hearing loss, a regular hearing aide is not effective. She was signed up for BAHA hearing aide. My initial reaction was no no no to surgery lol, but after the dr explained to me that without the surgery she has no depth perception, no balance, so she won’t be able to walk or stand well or sit well or reach for things. This is why she reaches out with her hand the way she does, like she is searching with her hand instead of her eyes. When her left eye is turned in she can’t see out of it, only can see out of her right eye and vice versa. So basically the inner muscles of her eyes are too tight and pulling her eyes inwards, not at the same time though, so they have to fix it so she can see and she has moderate hearing loss, she can hear, just not well.

Penfield, which encompasses the intersection of Routes 153 and 255, in Huston Township, is an older village than one might think. The driving duo of lumber and coal gave rise to the locale’s economy is the late 19th and early 20th century, but the town was settled or founded by a man named Gould Hoyt in 1839. Mr. Hoyt was the son so Catherine Hoyt, a Vermont native and a Revolutionary War nurse and veteran who lived from 1758 to 1845. Her short obituary listed her as a “mother of the revolution.” She is buried in an unmarked gravesite just north of the intersection. A historical marker notes the approximate spot. As is told, Gould Hoyt had neat penmanship and the Penfield was named for his talent. John DuBois, the 19th century lumber baron, whose namesake is given to DuBois itself, expanded his logging operations and railroads throughout the Bennetts Valley, essentially connecting DuBois to St. Marys. DuBois was the catalyst whose ever-expanding resource extraction interests made the Penfield area rapidly grow. Markets needed laborers and immigrants, at this time, served the purpose. Many single men, and later their families, arrived from poorer regions of southern Italy as well as Eastern and other European regions and spiked the population growth of Penfield and the surrounding communities. Many of their names and family traditions still thrive in Penfield today. One ingrained tradition was the willingness to work hard to get ahead. Tanneries, that processed hides into leather, often became a spin-off industry of the lumber business. Tree bark and an abundant supply of coal were two essential products that kept tanneries in business. The 1912 photo shows Elk Tannery company houses in Penfield. They were simple wooden structures, simply built, to provide double-family occupancy. Large families were often crammed into these units. Rent was often deducted from worker’s wages. The abuse of that system, as well as company store policies, was often a source of labor strife at the time. The photo shows the surrounding hills, sets of railway tracks, dirt streets and a locomotive watering tank. The company house design resembles that of the somewhat more picturesque New England “salt box” style, but the working families of Penfield, then, saw them basic shelter as they hoped for a better future.

One bad thing Faith Marie does that drives us all batty is... she grinds her top teeth & bottom teeth together!!! 😤 hate that sound!! We hurry & put a teether in her mouth. She can grind away all she wants on that.

She is doing ok. Getting teeth in 1 or 2 at a time makes an unhappy Faith & mommy, but mommy puts real vanilla on her gums & makes a happy kid!! She is still having 3 therapist come to the house a week to work with her speech, muscles, & sitting/rolling/standing. All 3 ladies are wonderful with Faith, Brandi, Deryk, & the Midget. They all spend a few moments playing with big sister Midgy & her ball, lol. With this Coronavirus, they are going to be as vigilant as they were when Faith came home. This virus can easily kill Faith because of her weakened immune system.

Thank you, to everyone who has followed along with Faith Marie’s journey to reach a year old!! The majority of us learned what Trisomy 18 is. We also learned that “Trisomy 18 is a Diagnosis, Not a Prognosis.” We have no idea what the future holds, we will go day by day. Everything is in God’s Hands, His plans & His time. 🙏🏻💜🙏🏻

I hope you all saw her pic on POTD!!

The shirt says - For This Little Girl We Have Prayed

Happy 1st birthday Faith Marie!!

Faiths oxygen was an avg of 95% last night. She had it up to 98% which is great. Still congested this morning. She was fussy and gassy yesterday. Still has a lot of junk in her nose and throat but hopefully it’ll get better today 🙏 she’s been cranky with her bottle but I think she had sinus pressure and maybe a headache yesterday too. So hoping for a better day today. We are restarting therapy this week with strict rules of if anyone is in contact with someone who is sick to just reschedule. But we’ve got to get her back on track again.

Midgy Widgy!!

She had an oxygen level of 97% through the night! Still congested but lungs are sounding much clearer, it’s like it went back to her nose again lol but I think a few more days and we will be almost back to normal 😁

We got Foxy the Pomeranian Dec 15 from a local lady. She is 13 weeks old & will not leave Chi Chi alone!! Chi is still jealous but is getting better by the day. Foxy does great on car rides, lays down on the seat & goes to sleep or just keeps her eyes on you, but does not move. She has learned to jump on the couch already. She likes to lay beside you & not one you, which is good, very good! We love ❤️ her!! Her face reminds us of Sienna, especially her eyes!! They have brown Egyptian eyeliner, where Sienna’s was black. If anyone has advice on raising them, please, type away!!

We thought those were awesome!! Mommy thinks up some pretty good ideas to tease Daddy sometimes!! 😂🤣😂 🦌

I don’t know who got Faith those. I do know she didn’t have them on long. That girl hates having socks, pants, long sleeves, or pj’s with footies in them. She gets hot real fast & becomes cranky, till you get her down to a onesie. She puts off heat like her Papa Winkler, you will be very 🥵 holding her.

Faith Marie was rooting for the Steelers yesterday!! 🖤💛🖤💛🖤💛🖤

We just loved getting these pictures today!! 😂 ❤️ 🦌 💚

Happy Thanksgiving everyone from the Winklers & the Spicher’s!!