Baby Alice - Little Chiari Warrior

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Brandon, FL
Baby Alice - Little Chiari Warrior

Follow as learns to navigate through life.

05/19/2020

Enjoying a little snack today!! Peanut butter crackers, yum yum yum!!

05/16/2020

Early this morning, i got this email. After waiting over 6 months, the Undiagnosed Disease Network has accepted Alice into their program. We'll head down to Miami for 2-5 days of testing, where they will hopefully connect all of the dots and figure out her best treatment plan and possibly come up with a totally different diagnosis. Honestly, i didnt expect to be accepted. The application procress alone took a month and they only take a few cases, and i just didnt think alice was "that bad". I think with her unique presentation of Chediak-Higashi Syndrome, that made them curious about her, i hope. Im worried about what will come from this - a new treatment, a new diagnosis, or the recommendation for a bone marrow transplant. I dont know when we are going. We're doing the consent via zoom next week and scanning the needed documents, but I think after that they dont try to wait too long. Especially with FL opening back up. There is a possibility that it'll happen while Logan is with us. But if it does, thats ok, we'll just take him along like we do with abby. Mostly, im just nervous for alice and all of the testing they'll be doing on her. She's been through so much already. But that just means she tough and strong 💪 and can take whatever life throws at her!

02/10/2020

Its Feeding Tube Awareness Week!! Alice has been a tubie since July 2018, first with a g-tube and then in January 2019 she switched to a gj-tube (pictured below). Its a double port tube where one tube goes straight into the stomach (the g port) which we use for meds and boluses of water throughout the day. At night we use the J port, which is a longer tube that enters the small intestines, allowing us to bypass her stomach for formula feeds. This has helped Alice stop vomiting, and therefore finally gain weight! She's getting stronger and healthier every day because of her feeding tube, and i know one day she will be tube free! She is already eating more and more by mouth, and can have thickened liquids as well. Our next step would be switching back to a g-tube, and then eventually the removal of the tube all together!! We still have a long road to get there, but i know she can do it!

01/20/2020

update time! Friday we saw her GI doctor, and we were all happy to see that she's gained 3 1/2 lbs in 3 months! She has been eating more orally, and is drinking thickened liquids like a pro, so he agreed to stop her daytime feeding tube feed (which is 6 hours long) and recheck her in 3 months! To replace the fluids, and to increase her water which she needs, we are doing boluses of water through her tube throughout the day. This is small step forward and towards her eventually being able to be tube free! Overall, she really has been doing fantastically. Her labs are stable, her scans are stable, shes eating more, she's growing, she's learning new things every day, its just amazing. She's truly my !

01/08/2020

We havent spoken to the neurosurgeon yet, but i was able to read Alices MRI reports online through the patient portal. Aaaaaand.... shes remaining stable! Her herniation hasnt grown any further, there appears to be no syrinx or csf blackage, and so she wont be needing a 2nd surgery at this time! On top of that, her recent labs show that her immune system is actually improving!! We see her doctor tomorrow and we're going to discuss coming off her prophylactic antibiotic, which shes been on for a year! So hopefully the doc will agree that shes stable enough to come off it. Shes also eating more by mouth, but is still dependent on her feeding tube for 90% of her nutrition, but we're moving in the right direction! My little warrior cotinuous to surprise me, and this time for a good reason!

12/15/2019

We havent spoken to her neurosurgeon yet, but from what i can read on the patient portal, Alice seems to be holding stable! Which is amazing! However, it doesnt explain her regression in walking, or her constant vomiting. It seems like we are still missing a piece of the puzzle. Hopefully the Undiagnosed Diseases Network - UDN will be the key to getting her back on the right track. Once i talk to the NS ill updqte again, but i truly believe she will Not need another surgery anytime soon. So thank you for all of your positive thoughts and prayers and good vibes and whatever else! They must be working 💜💜💜

12/13/2019

We're here, waiting for Alice to get her MRIs! Please keep her in your thoughts ans prayers, we could use some good news!

11/22/2019

We finally got the recommendation letter from Alices doctor and we applied for her to be seen at the Undiagnosed Disease Network (UDN). Im nervous about the application process, im sure they get a lot and i know they cant help everybody. But her geneticist is sure we are missing something and feels like they are the people to find it. As of now, she is still sick, from the RSV, croup, and rhinovirus from 2 weeks ago. Her cough sounds horrible and shes still vomiting and battling low-grade fevers. She also now has pink eye, which she gave to my 6 yr old, so they both are gross right now and fighting the drops that they need every 3 hours, fun times. Its almost thanksgiving and im just hoping everyone is well by then.

Address

Brandon, FL
33510

Telephone

+18138534896

Website

http://www.gofundme.com/babyalicelittlechiariwarrior/

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