Jojo’s fighting spirit

Jojo’s fighting spirit Jolene was born with an inherited rare genetic condition called 15q11.2 microdeletion syndrome, she also has Cavernous Malformation syndrome.

Since birth she has struggled with feeding and projectile vomiting. Along with global delays.

It’s been awhile for a update, Jolene has been doing good! Her Gi dr had run a urine (Uric Acid profile) on her and has ...
07/05/2023

It’s been awhile for a update, Jolene has been doing good! Her Gi dr had run a urine (Uric Acid profile) on her and has found she’s deficient in a couple strange things and he isn’t sure what it means. He has put orders in for a bunch of lab work to be done and sent the info to her genetics dr. She will get her blood work done the first week of august and then sees Gi the following. She has a follow up with genetic in October.

Ms. Sassy pants showing how happy she is that she’s discharged from neuro!!
03/16/2023

Ms. Sassy pants showing how happy she is that she’s discharged from neuro!!

I know it’s been awhile since an update but we finally have one that’s worthy! Her extensive genetic screening came back...
12/22/2022

I know it’s been awhile since an update but we finally have one that’s worthy! Her extensive genetic screening came back and found nothing further! We are also are on month three of not using her tube! She has a weight check on February 13th and if she gains weight she will be getting her feeding tube out ❤️❤️🎉🥳🎊

Jolene’s appointment went good! So they’re waiting for her further genetic testing to come back to confirm the diagnosis...
08/30/2022

Jolene’s appointment went good! So they’re waiting for her further genetic testing to come back to confirm the diagnosis for sure. Or They would like me to get a brain mri to also confirm. If it does come back that it is the cavernous malformation syndrome and not micro bleeds then there is medication that is in studies now that she may possibly be able to start that could stabilize the cavernomas. All in total there is 6 or 7 cavernomas. The drs broke down everything very good and made it where we understand everything a lot better. They’re also going to be working with her neurologist back home so we don’t have to constantly come back to Cincinnati. She has to have her second mri in October. The way the spots are on her brain they look like they could be micro bleeds from birth, but what makes them believe they are cavernomas is that there is veins leading into them. That’s all the information we have for now. So nothing has changed for now which is good!

Waiting for the drs to come in now!
08/30/2022

Waiting for the drs to come in now!

We have made it to Cincinnati and have been to the zoo 🙂 tomorrow is the day we see the dr in the morning!
08/29/2022

We have made it to Cincinnati and have been to the zoo 🙂 tomorrow is the day we see the dr in the morning!

We just left for Cincinnati. Jolene has also been asked to part of another study!
08/29/2022

We just left for Cincinnati. Jolene has also been asked to part of another study!

After six days we had to use the tube tonight, we know and expect regression at times and I’m extremely proud of the pro...
08/25/2022

After six days we had to use the tube tonight, we know and expect regression at times and I’m extremely proud of the progress we have made this past week. PROGRESS NOT PERFECTION! ❤️

We have a fantastic update!!So as of today Jolene hasn’t used her tube in five days to feed! Every thing has been by mou...
08/22/2022

We have a fantastic update!!
So as of today Jolene hasn’t used her tube in five days to feed! Every thing has been by mouth!! And she hasn’t lost any weight!! Now to hope that she stays on this trend! We see the Cincinnati drs in a week! Also they’re resubmitting her genetic testing due to the Cavernomas found on her brain.

Address

Ovid, MI
48866

Telephone

+19893073960

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