Charlotte's Web: Charlie's Story

Charlotte's Web: Charlie's Story This page has been created in hopes of spreading awareness about the rare diseases (FPIES, CSID, MCAS) Charlotte Elizabeth, Charlie, fights every day.

Today, October 14, is global FPIES day💙 Awareness is the key to successful treatment of this rare food allergy. Many hea...
10/14/2019

Today, October 14, is global FPIES day💙 Awareness is the key to successful treatment of this rare food allergy. Many healthcare professionals are still unaware of FPIES, which lead to multiple ER visits with no answers, little hope, and a failure to thrive baby. Thank God her doctors and specialists worked together to provide Charlie with the very best care soon after she started to show symptoms. Some children are not so fortunate. Please share to help raise awareness of Food Protein Induced Enterocolitis Syndrome💙 Together we are not alone.
Visit Charlie's page or fpiesfoundation.org for more information. Thank you!

🙌I have got to testify for a minute on how good God is🙌If you would've told me last year that this baby would be thrivin...
10/09/2019

🙌I have got to testify for a minute on how good God is🙌
If you would've told me last year that this baby would be thriving and close to beating FPIES I wouldn't have believed you. 2 whole years of only breastmilk and Elecare formula. The extremely strict diet I had to follow (mostly only fruits and a few veggies) in order to feed her without causing a reaction. The food aversions, the feeding therapies, the weaning, the complete terror and untrust of food. The ER visits, the surgeries, the sleepless nights, the hospitalizations. The tests, the countless needle sticks, the IV's, the weekly doctor and specialist trips (sometimes 5 days a week). The hypovolemic shock, the paleness of her skin, the listlessness of her eyes, the vomiting, the bloody stools, the many many many months of being failure to thrive. We couldn't see past all of that. We had heard others talk about outgrowing FPIES but a part of me thought that would never be her because of all of her other complex issues. I remember moments where I would weep and feel like it would never end.
💞But, God.💞
But God always sent that still small voice to remind me to hold on. To hold all of us in His hands and bring us unimaginable comfort and peace in the scariest moments of our life. I saw Him in her eyes when she was laying in hospital beds with a smile still on her face, completely resilient and strong. He held us all together. He told me to hold on. I held her and knew He was holding us all.
Here we are today, with another FPIES pass. My baby can finally enjoy the simple joy of a handful of fruit loops or cheerios. There is one less thing we have to worry about her coming in contact with. We have one more to trial, rice, and then we can kiss FPIES goodbye.
She still has her struggles, but we have the best specialists and treatments to keep her happy and healthy. She is the strongest person I have ever met. She has taught me so much about strength, positivity, love, and faith. This girl is a testament to God's love and grace. We are elated that today went well.
Thank you all so much for the prayers and calls, texts, messages. We are so lucky to have this support system for her. I know those prayers are working💕

She passed🙌🙌🙌🙌🙌 All the glory to God!
10/08/2019

She passed🙌🙌🙌🙌🙌 All the glory to God!

She is nearing the 2 hour mark, when her reactions typically occur. Praying hard for a pass! In the meantime, she has ma...
10/08/2019

She is nearing the 2 hour mark, when her reactions typically occur. Praying hard for a pass! In the meantime, she has made everyone a tiara👑

IV is in, oats are in. Now, we wait🙏🙏🙏🙏
10/08/2019

IV is in, oats are in. Now, we wait🙏🙏🙏🙏

We are en route to Cincinnati for another FPIES food trial 💙 We check in to the hospital tomorrow morning. Please rememb...
10/07/2019

We are en route to Cincinnati for another FPIES food trial 💙 We check in to the hospital tomorrow morning. Please remember her in your prayers. We are hoping to pass oats! That would mean huge things for this little princess! Also, pray for the IV. Her little veins are awful and hard to stick. The ultrasound crew got it on the first time last trip so we are praying for the same results! We will keep everyone updated 🥰
Joshua 1:9 "Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go."

It's been a while since I have done an update, and for that I apologize. It has been super hectic around here (shocking...
09/25/2019

It's been a while since I have done an update, and for that I apologize. It has been super hectic around here (shocking, I know😂)

We are less than 2 weeks away from another trip to Cincinnati Children's for another FPIES trial. This one is gonna be a biggie. Oats. Oats and rice have been her worst reactions to date. Her first exposure to oats was at 6 months and we ended up in the ER with her in complete hypovolemic shock. She was blue and nonresponsive as I ran her in the door. This was the turning point for her, the reaction that lead us to her first diagnosis. To say that we are nervous is an understatement, but there is good news as to why we are trialing oats. None of her other allergies bother her anymore now that her medicines for MCAS and SIBO are leveled out! The only 3 we have yet to try are oats, rice, and peas. All of her other 15 triggers are gone!

Most FPIES kids grow out of it by school age, many around 3 years old. If she passes oats, we will go back and try rice in the spring. If not, then we will still try rice but we won't try oats again for another 18 months. We are praying this is a pass! We can't wait until the day that we can say goodbye to FPIES!!

Aside from that, her mast cell disease rears it's ugly head from time to time. We have been having to give more benadryl for reactions than we used to. I think her body is becoming used to her histamine blockers. We will get to touch base with her specialist in Cincinnati to make any necessary adjustments. The daily flagyl for her SIBO has helped her little gut so much. It keeps the inflammation under control so much that she rarely ever needs to use her Sucraid! They believe it has repaired her intestines so much that her enzymes are starting to be able to form correctly! Which is a big deal!! She started PT for her hip atrophy. She loves it so much! She has no idea she is working herself hard (and she takes a long nap afterwards so yay for Mom👍).

She is still pretty reliant on her G tube. She does eat a lot more, and her digestion has gotten a ton better, but she is still on overnight feeds and a couple of boluses a day. We have experimented with volumes to see how she would do with less and it is overly obvious her little body is nowhere near being independent from the tube. That's ok though. We are so very thankful for it, and she is doing well on her growth chart!

We ask that you keep her in your prayers for the upcoming Cincinnati trip. We are praying hard for her to pass this food trial!!

Update on miss thang💕Since we have been home from Cincinnati, she has tried a few different dairy items but is not a fa...
06/10/2019

Update on miss thang💕

Since we have been home from Cincinnati, she has tried a few different dairy items but is not a fan of any. She definitely will not drink it. Yogurt has been the victor so far, and she will only eat it off of a blueberry covered fork. Whatever works😂 She did NOT have any FPIES reactions to dairy! However, she has had quite a bit of stomach upset and really bad diapers that are exactly like her CSID diapers. It seems she may also have a low or nonexistent lactase count like big Bubby to go along with her other dissaccharide deficiencies. I will be putting a call in to GI tomorrow to see what the plan is.

Friday we added a new specialist to her care team, an ortho doc. She is hypermobile so it seems she will fall into the EDS category like the rest of us. She does have quite a bit of in toeing going on but the doc isn't concerned. What she is concerned about is her hips. They are extremely lax and weak. She starts PT this week to try and build up some strength. She also suggested PT for us all and said we would benefit from being lifers to keep our connective tissues intact.

Aside from that, we are setting up her next food trial (eggs) and an appointment with both her MCAS specialist and a geneticist for our next Ohio trip in October.

Thanks for all the continued prayers for our baby💕

We are home safe and sound💕Wanted to share a little God wink with y'all. This sign was in our hotel room in the vanity ...
06/05/2019

We are home safe and sound💕

Wanted to share a little God wink with y'all. This sign was in our hotel room in the vanity area. I love is when He speaks to us! Another challenge down, more to defeat in His timing🙌🏼

Praising Him for the mountains and the valleys💙

She passed🥛🧀🍦
06/03/2019

She passed🥛🧀🍦

06/03/2019

Just a few more hours to go💕

06/03/2019

2 hour mark came and went, still going strong💪🙏

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3333 Burnet Ave
Cincinnati, OH
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