That light he has inside has continued to shine despite so much pain and discomfort. For most of his life he has endured digestive and breathing issues, a multitude of allergies and a severe case of eczema.
For some, eczema is limited to a few dry skin patches and some itching. Not in Liam's case. At the worst point, there was no part of his body unaffected. It was an extremely itchy, sometimes scaly, sometimes oozy rash. Several doctors said it was one of the worst cases of eczema they had seen.
To understand what Liam goes through, imagine the most tormenting itch you've ever had, from head to toe. Even though it hurts to scratch, the itch is so bad it's torture not to scratch, and if nothing stopped you, you would scratch yourself bloody.
Liam couldn't sleep because he was so itchy and it interfered with his playing, eating, everything. His scratching was tearing his skin and putting him at risk for infection. We had to keep his nails trimmed everyday and figure out ways to stop his scratching such as putting socks on his hands.
His skin improved for awhile, but didn't completely heal. It was a constant battle to keep his nails trimmed, his skin moisturized, and to keep him from scratching. One area would heal, and then another would flare up.
Friends, family and the many specialists who have seen Liam have recommended everything, at one time or other: more baths, fewer baths, ointments, creams, steroids, skin wraps, damper air, dryer air, highly restrictive diets (at times, restricting almost everything) for Liam, highly restrictive diets for Mom while she has nursed, special formulas. Some have helped a little or a lot, but never completely and never for long "” and most come with side effects.
It got worse when he started eating/drinking things other than breastmilk at around 6 or 7 months, and that's also when the more severe allergic reactions began. Liam would vomit repeatedly, swell up in places, his rash would worsen, he would have diarrhea, and he would get pale and lethargic. We took him to the ER or to urgent care several times.
At around the same time, his weight had begun dropping off his growth chart curve. He was also starting to crawl and be much more active, so we weren't concerned at first, as it is normal for weight gains to level off or even drop at that age. But from month 8 until month 11, he stalled and stayed around 14.5 lbs or so, fluctuating only slightly above and below that, no matter how much we fed him or tried to feed him "” Liam was extremely picky, eating only a few different things and refusing everything else.
Then the chronic congestion Liam had through the autumn got worse. I (his mom) had been mentioning it to the pediatrician, who mostly brushed it off with suggestions for a humidifier and suctioning, which we did. But Liam was having bad coughing fits and his breathing sounded awful, so I recorded it and played it for the doctor. He finally seemed concerned.
This all came to a head in December, when Liam was 11 months old. We had asked about seeing specialists before, but were told there wasn't much they could do when Liam was so young, or that they wouldn't recommend much more than what we were already doing, or that there were none in our area. But by this point, everyone agreed we needed more help, more information. His pediatrician referred us to some specialists to run tests and see what might be causing his slow weight gain and to look into the breathing issue. We also asked around for recommendations for specialists and got the name of an allergist who specialized in eczema cases. But when we called for appointments, they were all booked for months.
In the meantime, Liam had more allergic reactions. Dairy, wheat, soy, eggs, hummus (chick peas and sesame), a topical antibiotic cream, all had set him off. More recently, he's reacted to black beans, fish, eggplant and potatoes.
The allergy tests showed Liam as being allergic to almost everything, including all nuts, corn and most legumes plus everything listed above. He needs special formula supplements and superhypoallergenic formula, and his mother continues to avoid his allergens in order to continue breastfeeding. There are about a dozen or so foods he can safely eat.
Liam is also on several medications to manage his allergies and eczema. He has to have an Epi-Pen (emergency adrenaline) with him always in case of a life-threatening allergic reaction.
He's still waiting to get a swallow study done and a endoscopy of his esophagus so a biopsy can be done to see if there is damage from his allergies.
During all of this, Vince had to take a pay cut. Jessica, meanwhile, had to quite unexpectedly cut her paid work hours to little or nothing. It was the only way to make sure Liam's needs were met. The attention he required made daycare out of the question. Liam needed very frequent feeding, weigh-ins, bathing, changing, skin treatments, intense supervision to keep scratching to a minimum, frequent nail clippings to prevent cuts from whatever scratching couldn't be prevented. He also needed lots of comforting.
The attention of the specialists has been welcome, but the time needed for the appointments has made it even more difficult for Jessica to get back to full-time work. The insurance from Vince's job helps a lot, but the expense of copays, expensive formulas, and over-the-counter remedies adds up quick. Liam (and his mommy and daddy) spend lots of time traveling to the pediatrician, the dermatologist, the allergist, the nutritionist, the swallowing specialist, the gastrointestinal specialist, the ear-nose-throat specialist, the pulmonary specialist : Liam especially hates traveling to the lab for blood draws.
To make sure that Liam's slow growth hasn't brought about developmental delays, he also sees a physical therapist, and has had a session with developmental specialists. We are grateful that he is beginning to walk and talk and, despite being small, seems to be developing normally. He is bright, attentive, social and "” in between various types of miserable physical episodes "” very happy. There has been some improvement, but the next episode is never far away.
As Liam starts to walk and spend more and more time on his feet, literally, you can help him as he also gets on his feet medically, and as our family works to get back on our feet financially.
We work hard, and make just enough to not be able to qualify for public assistance. We have never spent extravagantly, but we have found it difficult to keep up with month-to-month expenses, and with what debt we have taken on. We'd like to get some things paid off, and work our way back to being on a pay-as-you-go basis.
We're negotiating with doctors and creditors as much as we can, and haven't ruled out filing for some form of bankruptcy in the future, to further re-structure or discharge some of our debt.
We live in the country, and are making payments on two used cars that are necessary to get anywhere. It used to be that both cars paid for themselves by getting us to work, but now one car gets used primarily for doctor visits, and isn't generating much income. Paying off one of the cars would be a good first step to
getting on top of things. We may eventually move into a more populated area, where housing costs are low, and we can rely on only one car (the one Vince has to use on the job).
Vince used to generate a little extra income, by providing his voice to instructional tapes and videos, and is weighing the cost-effectiveness of updating some sound equipment, in case that can bring in some needed additional income. Jessica is
considering some ideas for home-based businesses, but we want to make sure everything is done right, and that the chances are good at making a helpful amount of additional income.
And so, we find ourselves doing one of the most difficult things we've ever had to do.
We're asking for your help, as we work to get Liam and our family to a better place.
If we can raise $5,000, we can pay off the car that gets Liam to the doctors.
If we can raise an additional $5,000, we can pay off the car that Vince uses on the job, and be sure to protect at least one vehicle, if we end up having to declare bankruptcy.
Any additional funds would go toward paying Liam's medical bills, toward helping us pay down some additional debt, and toward helping us catch up on some bills for necessities.
Like we said, Liam has started to improve.
We would love to have you follow his growth and his improving health with photos, videos and written updates, as he leads his family onward and upward from this period of difficulty.
Thank you so much.
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