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Tiff’s Medical Journey, Newnan, GA (2025)

08/21/2024

!!!!PLEASE READ THIS IS SO AMAZING!!!!

Beautifully Baked by Bonne Boyd Bedingfield has so graciously donated a sculptured cake of your choice for me to raffle off to help with our daughter Tiffany’s medical expenses (value is $500 and subject to Bonne’s calendar and availability). The price for tickets are listed below:

1 - $10
2- $15
3- $25

Visit Beautifully Baked by Bonne on Facebook and Instagram to see her amazing work.

What Information I Need by Private Message:
Name
Number of tickets
Payment

Money can be sent:
Venmo: -Wilson5209
PayPal:
Zelle: 4046065896

Raffle will run from 8/21-9/21
For each ticket bought your name will be entered that many times. On 9/21 I will go live to spin the wheel for the sculpted cake. It would also be amazing if you would share this post.

!!!!!!!!DON’T WAIT GET YOUR RAFFLE TICKETS TODAY!!!!!!!!

07/21/2024

As many of you know Tiff is headed back to Hopkins early for an unexpected surgery I’m going to do a calendar fundraiser again to help with her uncovered expenses. Donate if you can and share with your family and friends. Thank you all so much for your continued thoughts and prayers.

Tiff’s Calendar Fundraiser!!!

Pick one date box in the December calendar and donate that amount!!!
You can pick one date box or multiple date boxes add them together and donate that total amount!!!
The blank spaces on the calendar you can donate any $ amount.
No $ amount is too small as it all adds up. You can send money via venmo below and it will go directly to Tiffs medical expenses.

Venmo: -Wilson5209

Please feel free to share!!! Thank you so much in advance for your consideration.

I will update taken calendar dates as friends and family take them.

07/13/2024

July 4, 2024

Tiff, Chad and I are headed back to Hopkins. We will followup with orthopedics, pain, urology with a new appt with a pediatric gastro surgeon. No followup with genetics or cardiology this go around as her heart is stable. We will rescan in 6 months for that. But Tiff has been having what we thought were urology issues stomach pain, nausea, bloating, hurting after urination, yeast infections etc.

Well before we left for Hopkins Tiff had a CT scan done as she was having the above issues with urinary that we couldn’t figure out. So the gynecologist/urologist sent her for a CT scan to see what was going on. We’ll come to find out while her urinary system seem to have no problems they came upon another finding by accident. They discovered that she has gastrointestinal malroatation without Volvulus. In short she has lost connection tissue in her abdomen which holds her large and small intestines in place and now they look like sphagetti all tangled and twisted. The only way to correct it is through surgery to put them back in place. So after they found this I contacted her genetics Dr. at Hopkins and they immediately got us in with a surgeon and she will have surgery more then likely end of August to correct this. Surgery will be at Hopkins.

Day 1 Pain Dr. Sullaman
Tiffany’s overall pain is not controlled with current medication regiment so he has changed some of her meds and we hope that will help until surgery July 2025

Dr. Sponseller orthopedic now has tiff in feet and ankle braces, back brace, and knees braces to try and keep everything braced and relief from pain. Her lower body continues to torsion her right side is 70% rotated and her left side is 50%. Her feet continue to be a bad problem as well and will also have to be corrected in the surgery. Her pre-op and torsion scans will be done May 2025 so they will be current right before surgery. She will also have to followup with genetics and cardiology to have repeat echo and clearance from cardiology for surgery. Surgery is still scheduled for July 2025

Day 2 Urology
Tiff saw urology who is trying to get to the bottom of her continued yeast infections as well as her urinary pain. Ultra sound, bloodwork, and x-ray were completed but thinks that these things are being caused by the intestinal issue. Waiting test results from blood and scans.

Day 3 Gastro Pediatric Surgeon
Tiff saw surgeon due to a new finding with her intestines. He ordered an upper GI which confirmed that she does have malrotation and will have to have surgery. So her intestines are a mess they are going to try and do the surgery with robots but if there is a lot of scar tissue they may have to open her up and they will remove her appendix as well because is it up under her breast bone and has been causing her some trouble. They have to repositions both large and small intestines and hold them in place somehow until they kinda adhere to her abdomen with her own bodies scar tissue. We are still waiting on all the specifics from the surgeon I keep you posted. It’s called the Ladds procedure. Surgery will be end of August so we will be headed back to Hopkins.

07/13/2024

March 25, 2024

Tiff and I return to Hopkins solo this time as Chad has to work and hold down the home front. We arrived early for the MRA of her heart. This was being done to get a total inside look at her heart and to know exact measurements of her valves and function so that further echo cardiograms would be very specific and that the treatment for her ASD and her ARD could be better controlled. Dr. Dietz also wants her on 100mg of Losartan as studies have showed this level best controls the dilation of her aorta. She will go for bloodwork every two weeks until further notice to make sure that the levels of certain enzymes in her heart don’t get out of control because these are the ones that control the function and rhythm of the heart.

Our second appt was with Dr. Sponseller Tiffs orthopedic. Tiff has still been in a lot of pain from her waist through all of her lower extremities and after further studying tiffs images and current images they discovered that she has some malformations in the lower transverses of her spin. They have discovered that this misalignment she also developed in utero but the transverses are torsioned so close to her hips that when she has any kind of movement they hit against her hip bones causing pain. They also discovered from these recent images that her femurs have decided to rotate 180% causing even more misalignment in her lower extremities. They can’t do surgery to correct her back but Dr. is almost 1000% sure now that the back pain is being caused by the miss alignment of her legs feet and ankle. Orthopedic has said that she will have to have surgery on her femurs, tibias and both feet in order to correct all the torsion in her lower extremities to help relief the pain she is in. We will be back in July to have follow ups and MRI torsion studies done. Surgery will be July 2025 as they are needing her to be done with most of her growth for it to have the most success.

02/22/2024

December 3, 2023

Update on Tiffany!!!!
First and foremost thank you to everyone that helped us prayerfully and financially get to John Hopkins. It would not have been possible without all of our family and friends and we have been blessed in so many ways with Gods hand guiding us along the way.

As our next visit draws near to Hopkins next month because of everyone’s generosity both of these Hohn Hopkins trip have been covered and I just can’t thank everyone enough.

The initial out come of the first visit was this:
As you all know Tiff has been in horrible and uncontrolled pain for about a year and a half. So our day 1 of appts at Hopkins was neurology and orthopedics. Neurology looked at the MRI of her back and confirmed she does have Dural Ectasia caused by her Marfan but once again has stated that this would not be causing her pain to the degree that she is having. Not going to lie left there once again feeling kind of defeated thinking here we go again with the mysterious severe pain that no one can tell us the source of.

Afternoon came and we meet with orthopedics and this is where the prayers and praises started rolling in. So we meet with one of the most amazing orthopedics I’ve ever meet. He spend forever with us and was genuinely the most concerned person about the debilitating pain Tiff has been in. He immediately sent Tiff for a set of x-rays on her back and her feet which mind you I have been trying to get her orthopedic in Atlanta to repeat since her last set was back in 2021 and he continued to tell me that was not necessary. Anyway when the x-rays came back he was like well there is the problem you can only imagine our faces when he told us that. She has a stress fracture in her lower back and upper hip area where it comes into the back. If you could only have seen me, Chad, and Tiffs face it was like what the actual (insert thoughts of bad words). He also proceeded to tell us that she has an 18% curvature of her spine known as scoliosis, and that her feet have fallen arches which she walks on her navicular bones that have come out the bottom of her feet. So he wanted to get a better look at this fracture to see where we were with it in terms of possible healing because it was NEVER caught because no one wanted to repeat scans in Atlanta. So he sent her for a CT scan. When we got the CT scan back of course it healed but it has healed wonky/uneven or not properly and has some sort of protrusion that has developed which is causing all her pain. SOOOO he says there is about a 50% chance we can brace her back and feet to see if we can correct her skeletal deformities that have been cause by the Marfan syndrome so he is placing her in a rigid back brace for 3-4 months to see if we can correct this “healed” stress fracture and relieve some of her pain. She will also were her rigid feet and ankle braces for the same period. We followup with him in April to reassess. If this does not relieve her pain we will discuss surgery on her back and feet which will both happen at the same time. She will be in a wheelchair for 6 months if this surgery has to take place. Please pray that these braces will begin to correct and relieve her pain as this surgery would be brutal because he said it all would have to be done together so they can heal together at the same time. We did ask how this fracture occurred and he said with her hyper flexibility and sponginess that comes from Marfan syndrome and her lack of connective tissue to protect her it could have been something minor that she bumped or fell or pretty much anything that could have caused it. He wants her also in aquatic therapy as the Marfan is really affecting her skeletal system quit a bit.

Day Two
We met with Genetics/Cardiology again amazing team. The first thing he came in and said was he wants to complete whole axon sequencing on me tiff and Chad because of the complexity of tiffs medical history. This is something Chad and I have wanted for tiff but it is very tedious and needs to be read by the right team of doctors which we now have. If you have not heard of whole axon sequencing a quick and brief explanation is that this will test every single gene in tiffs body that will be able to detect any other autoimmune or genetic disorder issues that may be driving her other odd medical concerns. It will also test Chad and I letting them see which if any of the new findings from tiff came from me as her mom or from Chad as her dad OR if she developed them again just on her own while I was pregnant which was the case with her Marfan Syndrome. Neither Chad or myself were a carrier of Marfan tiff just developed that on her own. This is a huge step. The second thing he wanted was an MRA scan of Tiffs heart which is a 3D scan so he can get an accurate measurement on the dilation of her aortic root. There are two many discrepancies in her past echo readings and he wants a clearer picture of what her heart is doing. He also ordered regular bloodwork every two weeks to monitor levels in her heart and the losartan that she takes to control her dilation as he says it needs to be monitored closer and she needs to be on a higher dose to maximize its affects to slow down the dilation of the aorta. He also wants her at his pain clinic as he wants to dig deeper into the meds that are going to better serve her going further.

Some of these test and appts we could not make happen this week as they have tried their hardest to make happen but time slots are packed so we will be back in March.

Round Two:
Tiff and I will be flying back to John Hopkins the end of next month March for follow-up’s from her bracing of her back, feet, and ankles as well as her genetic testing results and heart concerns. Please keep us in your prayers and ask specifically for God to guide us in doing what is best for Tiff. The bracing has not corrected or helped with her feet or ankles as we had hoped and we won’t know about the back brace until we get an updated scan upon our return. We are ready for Tiff to be pain free and want to make the right decision for her. Thank you all once again for your prayers and I will update again once we return.

Sorry this was so long but some long needed answers and ones yet to come. Thanks again for all the continued prayers as we continue to navigate this with Tiff. Love you all.

09/02/2023

I posted a little bit ago about a huge door that opened for Tiff not long ago and promised to update when things got finalized. Well I got the email today that they have offered Tiff an appt with John Hopkins Children’s Hospital in Baltimore MD. This has been a very long road but God has opened this door and we are so very grateful.

Tiffs journey started a while back and very few people know about her medical complexity. We have been fighting for her for a long time and are hopeful this door will be the answers we have been praying for.

To keep it short Tiff has a plethora of health complications but the one that is taking over her body is her genetic disorder of Marfan Syndrome. It is breaking down her connective tissue in her body thus creating her immune system to attack itself leaving her in unbelievable pain as it has moved to her central nervous system.

We have been blessed with an open door to the top Marfan doctor at John Hopkins that has agreed to see and take on Tiffany as a patient. We will travel to Baltimore MD in December for a week to meet with him and his team of specialist so we can put in place a treatment plan that will help with Tiff and bring her better quality of life.

How can you help? We have opened up a medical savings account for Tiff. Although Chads insurance is amazing and covers a lot, some of the treatments they want to try are alternative medicine that is not covered by his insurance that we have to pay out of pocket for. We also have our travel expenses as well that will take a toll on our one income family as I am not able to work at this time due to me having to be there for Tiff and her many Dr. and therapy appts. We would welcome any donations that anyone would feel lead to give. Below are the pay apps I have and will transfer it directly into Tiffs medical savings account.

Venmo: -Wilson5209
PayPal:
Cash App: $cjctwilson
Zelle: apd209@yahoo.com

Thanks so much in advance and I will keep you all updated on our journey.

Much Love,
Chad, Jennifer, Christine and Tiffany Wilson

Tiff’s Medical Journey

08/21/2024

07/21/2024

07/13/2024

07/13/2024

02/22/2024

09/02/2023

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