Long story short, Lily has been through a lot in her short year of life. She has seen numerous doctors, struggled to gain weight, had many, many skin infections, and even had a stay in the hospital when it got so bad that they feared for her life. Through many months, they could not find the cause, but by the grace of God, they have recently discovered that mold is the main culprit. They have also found out that the entire main floor of their home is infested with it. In order to make Lily's environment safe, they are ripping out all of the flooring, treating the mold, sealing the floor, and replacing the flooring (even using vinyl click so they can do the labor themselves!). They are also having to replace their bathroom tub and kitchen cabinets. None of these expenses were prepared for, nor do they have the funds to accomplish what MUST be done to ensure a safe place for Lily (and everyone in her family who have been mildly suffering from the mold as well, unknowingly!).
If you would like to know more details about the severity of Lily's health issues, you can read the following letter, which was written by Holly. Please take the time to read, and if you feel so inclined, donate to their cause. They can use all the help they can get, whether that be financially or through prayer. We welcome it all!
Dear Family and Friends,
Greetings in the name of our LORD and Savior, Jesus Christ.
Many of you might not know of the struggle and journey we have been through for the past year with our precious Lily. We have not posted anything about it on Facebook or spoken of it to very many as we didn't know what was going on for a long time and have been so consumed with Lily’s care/treatments that we have not had time or energy to do much more than that in addition to what life already requires. Before I share our need, with my husband’s blessing, I would like to share with you a snapshot of our year in retrospect to bring you up to date.
Lily was born on October 15th, 2019. She was healthy, strong and competed with 5 of her siblings for our biggest baby weighing in at 10 lbs. 5 oz. All went well for about 3 weeks until when we started noticing some red spots on her face. We attributed it to “baby acne” and didn’t consider it too much until it didn’t go away and turned into “chapped cheeks” at around 6 weeks. We spoke to a pediatrician about it and she said to not worry about it as it was dry that time of year and to just put some emollient on it. We did so. It didn’t help. By the time December rolled around the “chapped cheeks” had turned into bright red spots on her cheeks and then by the first of January it exploded to all parts of her body in a matter of 3 days!
We initially saw some naturopath doctors in December and January. They determined it was something to do with a reaction to something but they didn't know what...since Lily was solely nursing at the time I went off all gluten, corn, soy, dairy and nuts to see if that would help. When those methods didn’t help, we decided to find an MD who could give us some insight and help. During that time, the rash exploded to the rest of her body. We followed his recommendations for a few weeks but nothing changed. As a matter of fact, it got worse, I mean, bad! It quickly progressed over the next few weeks developing numerous spots of staph infections.
This lead us to seek out a dermatologist by the recommendation of one of our providers. This was a critical time for Lily because she had developed several massive staph infections. They gave us medicine and topical ointments but I ended up being the one to drain each of them several times as well as the other infections that she developed on her skin over the course of several months. I never wanted to be a nurse but a mom has to do what a mom has to do! When I say massive I mean that even the dermatologists were almost nauseated by the size and amount of infection that was there when I drained one in their office. (They informed me that they don’t do that...they send patients to the ER for the draining.) After seeing 4 different dermatologists over a period of several weeks the symptoms would go away as long as Lily was on the medication, but as soon as the medication finished (this happened twice), the infection would come back with a vengeance!
This wasn’t the answer. We weren’t looking for a bandaid or a maintenance program but for true and full healing!
This motivated us to search out another approach which lead to a lot of blood tests...not fun! Through this process of testing (I (Holly) was tested too since Lily was still solely nursing) it was determined that my body had gone through an extreme amount of stress over the 7 months of working with Lily night and day (most nights I was up walking her around or in my chair rubbing her to try to sooth her pain and extreme itching so that she could rest - most days I was needed to manage the home and care for the children too, so my body took a hard beating for months) and that Lily was not getting the nourishment that she needed through my milk so she needed to be weaned and put on formula that word give her some nourishment. This was so contrary to everything I believed in and had done with my other children but at this point I was at such at a loss of what to do to help our sweet but miserable little girl. I would do whatever it took to help her get better.
I weaned her and then started trying to find a formula that she could tolerate but each one we tried she reacted to by becoming more inflamed and itchy. We found out that she had a very low if no tolerance to dairy, soy and pea.
By this time I was desperate! I researched other options and came across a recipe that had been used in rare circumstances that had a base of homemade chicken stock. It had other ingredients in it too to help with all the nutrients that a baby needs to grow so I started making it right away. To our delight, she tolerated it well! So, the next two months was full of making this stock and turning it into a formula every couple of days. All was going well with the formula until the end of August. Lily’s skin had gotten a little better but she was still very itchy many days to the point where she would itch herself to bleeding. By the beginning of July we determined that we had tried all that the previous provider had to offer (after being referred to a hematologist and another dermatologist and a nutritionist) so we decided it was time to make a switch and God opened up a window of opportunity with Lily’s current primary physician who is a DO (basically an MD plus, plus, plus), Dr. Basima Williams. Dr. Williams has worked with us since the middle of July and we are so grateful to God for her!
As I mentioned, the formula we were making worked until the end of August when Lily started throwing up her feedings. At first it wasn’t a lot but it quickly became just about every bottle. She started to lose weight (and was already underweight, due to the fact that we couldn’t get enough calories into her with the formula we were making).
In the midst of all of this, John and I made the decision to take a few days for the whole family to go camping. It was the first time in almost a year that we had done anything outside the house, really, besides a short day trip to St. Louis for a Costco run or doctors visits, etc. All the children have been so gracious about the whole situation with Lily and love Lily so much, which is a true gift from God in answer to our prayers! They could have easily become very resentful towards her for taking so much of mommy and daddy’s time and attention, energy and health over the past 11 months. So, we determined that this was needed for all of us to get away (even though we didn’t know how Lily would do with her throwing up and extreme itchiness). We chose to go camping at a State Park about 12 minutes from our house so that we could get home quickly if we needed to and ended up having a great time! Lily didn’t throw up very much and her skin actually started to clear up somewhat! We didn’t pay too much attention to that fact since we were all having such a good time together but I did make a mental note of it and mentioned it in some communication with her doctor upon our return home.
Right after the camping trip Lily started throwing up again a lot and it was determined that she was getting dehydrated and needed to go to the ER. Because of restrictions as a result of COVID, I had to go alone with Lily to Cardinal Glennon Hospital in St. Louis and she was admitted. We were there for 4 days and were so blessed by our stay. The first thing they did was put an IV in her to start getting her hydrated. The whole next day was full of lots of conversations with a host of doctors from many departments (GI, Allergy, Pediatrics, Derma and others.) The next day they started her on a medicine to help the throwing up and after another day of feedings she stopped throwing up completely! They also were able to access a special formula that has the proteins broken down to the amino acid level so that her body wouldn’t recognize it as protein (which up to this point her body had been rejecting proteins in formulas) and that is only available through a prescription called Ele CARE. After about a day of working with her to take it she took it and has been thriving on it since then! It is quite expensive so we are so grateful for the WIC program that is helping us acquire the formula for Lily which would otherwise cost us about $650 a month!
The other interesting thing that happened while we were at the hospital was that Lily’s skin started to clear up! I noticed it the second day we were there and by the third day I was seeing newborn baby type skin that I had not seen almost her whole life...not just on one part of her body but on her whole body and this was before any medicine was given to her so I knew that it was purely the environment that had changed! I took pictures and sent them to our doctor and she was amazed too. This development moved me to start thinking that our home environment might be the culprit of most, if not all, of Lily’s issues. Mold was my thought as I am being treated for mold and some other issues by my doctor. We immediately ordered a high tech mold testing kit that covered our whole house and we just got the results back this week...yes! We have a major issue with mold and the highest concentration of it is on our main floor where I spent the most of my time with Lily. It all started to make sense…after our camping and hospital experiences where the environment had been the only thing that had changed it made such a difference in her skin/itchiness, I decided to start sleeping in the basement where I thought the less amount of mold was based upon the lessening of her symptoms when in that room.
For the past two weeks Lily and I have been sleeping downstairs with the window open with a humidifier and diffuser going. Even though her skin isn’t as clear as it was up at the hospital she is able to tolerate this atmosphere somewhat better than the main level. After getting the test results we learned that the girls room was actually the least affected by the mold so we have moved into the girls room with them. Lily can actually sleep now! For the past weeks her skin would increase in itchiness to the point that she would not be able to go back to sleep so we would be up for hours in the middle of the night. When Lily has middle of the night itchy spells, I take her out to the van, drive around until she falls back asleep, and then we sleep there for the rest of the night.
All that to say...we have some major work that has to be done in our home to get it to where Lily can live and be in the rooms that we use most often: the living room (it has the highest concentration of mold spores), John and my bedroom (which she has slept in since birth), the kitchen and dining room and mom’s room. As of now if we spend more than 2-3 hours upstairs she flares up to the point that she is miserable for hours. All the rooms except the girls bedroom showed high levels of mold so they all need to be addressed. After talking with those who had dealt with this issue of mold before we have determined that we have to tear out the existing carpet/flooring and get rid of it, treat any mold we find and cover it with a sealant, find any source of moisture and correct it and then put down new flooring. Look at the pictures below of just how bad the infestation is...
The LORD has been so good to provide for us over the past year with all the additional expenses that have been incurred due to the medical bills, extra travel to the city for doctors’ appointments, medicines and on top of that the hit that the lawn care business received due to the repercussions of the COVID 19 situation. Not one bill has gone unpaid and not one meal has been missed. So many prayers have been lifted up on behalf of our family, on behalf of our little Lily and they have made all the difference. God has been so faithful and we have stood in awe of His provision time and time again...it is what has given us hope and energy many a time when we were so exhausted we couldn’t even think straight! We have no fear that God will provide what we need when we need it so we are at peace and will continue to demonstrate patience through this situation as we work towards helping Lily attain complete healing.
If you have made it this far, thank you so much for taking the time to read about the Flickinger family's struggles.
If you'd like your donation to be tax deductible, please make the check out to Christ Foundation church and mail it to: 1549 Mitchell Rd., Park Hills, MO 63601.
We appreciate each and every one of you that have gone to the Lord in prayer on their behalf. Updates to come soon about the progress they are making to accomplish everything that needs to be done to rid the Flickinger family's house of mold.
- Gjouille Ramos
- Anthony Ceraso
- Denise Wentzell
Organizer and beneficiary
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