Jun. 23, 2007 - Time for reflection...or rambling, however you want to look at it.. LOL

Wow, this last year has been a doozy!  As I look at pictures of Nolan and remember all that we have been through with him together as a family, it is difficult to think about.  It was March of last year when the eczema really got bad and we were at a point of no return.

I have struggled with depression in my life, at many times, but none of those times even compare to what we went through last year.  Amazingly, I never got depressed!  But I sure felt alone.  There were a few friends (4 in particluar) that kept up on me and Nolan, always asking how he was doing, how I was doing, offering whatever help they could offer.  One lived out of state, my sister-in-law Amy, but she always came into town whenever she could, rolled her sleeves up and dug in for as long as she was here.  The other three (I am going to name them, because they *deserve* the recognition - Nichole, Krysta and Jenni), much as they wanted to, really couldn't do much for me because they have young families of their own.  But they did what they could, and more importantly, they always asked me if there was something more they could do.  They truly showed me at every opportunity that they loved me and were concerned about my family and Nolan.  Krysta was a constant ear to my venting, which I did a lot of and always apologized for, but she didn't mind and always made me feel better!  Nichole was the same, and I'll never forget the day she came to my house around 6 am (this after having worked the night shift!) and stayed the better part of the day to help with the kids, let me rest, etc.  They all provided meals for our family at various times.  What a blessing!

Also, my brother- and sister-in-law, Aaron and Beth, that live locally came every other week to help one evening and spend the night.  Until September of this past year, my DH was working one night a week, all night long (in addition to his usual 12 hour days, six days a week).  He'd leave at 7 am, and not come home until the following evening at 7 pm.  So every other week, I had them here at night, which made it possible for me to drive the baby at night.

I remember feeling like I 'hit the wall' sometime back in June.  I was crying everyday, crying out to God to please send me some help, if not just heal Nolan.  My sister-in-law came for a whole week.  It renewed me in so many ways.  There were many times when I felt like I had hit the wall again, but there was no choice but to just keep going.  Stay awake.  Hold nolan.  Nurse him.  Try to keep it together for the older kids.  Keep going.

People...  People are funny.  I had all but lost faith in people in general.  I am just being honest, it's true.  Like I said, there were the few that were consistently keeping up with us, but in general, I felt forgotten, abandoned, like no one cared enough to give a little bit of themselves and their time.  Personally, I am a very empathetic person, and I am 'old school' in that I believe in community, and helping and giving of your time.  Not just your finances, which is great and I'm not belittling that, but it seems that people just don't give of themselves and their time.  Or if they do, they won't continue if they don't get any personal reward or satisfaction or enough appreciation for it.

People...  They don't know what to say. 

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Well, I don't know what I was going to write next - LOL - but I'm sure it would have upset some people around me.  The above entry has been sitting in my file as a draft since 1/16 of this year (07).  I decided to go back and read it tonight.  I don't know why I didn't finish it, life probably called me away and I just didn't get the train of thought back, or maybe I forgot it was there.

But this week my emotional thoughts of that trip to Denver with Nolan have been coming back, I think because we had some visitors that reminded me how difficult it was to do *alone*.  That was such a hard trip.  Physically, emotionally, E-X-A-U-S-T-I-N-G.  I remember being there and telling my husband, 'you know, I'm here, and there is NO ONE that knows how hard this is.  No one that will be able to tell others, wow, that was so hard for her to go through.'  It's difficult to explain. 

Even now, people tell me how great Nolan looks - and he does, he looks fantastic!  But I just wish they knew it's not like he's just 'better'.  It takes *WORK*.  A lot of hard work to keep his skin in check.  In fact, I had to add up the hours per week that I spend taking care of him for a hospital study.  Just for the eczema - baths, extra laundry, applying cream or medicines, etc; how many hours do I spend taking care of his skin alone? - about 15 hours a week!!!  YIKES.   And his allergies, they're scary to deal with.  Life-threatening food allergies - it's not something that just causes a sniffle and a sneeze!

DH and I were talking about how it's hard to believe he's almost two.  I know every parent feels that way with every birthday of every child, but I mean this in a different way.  We feel like he's only really been around since December.  Prior to that he was just a need, something we lived through - it's difficult to explain in print, and to anyone that hasn't been through the experience.  But before our trip to Denver, he was just the eczema.  He never had 'baby moments'.  He never laughed.  He never played.  (it's making me want to cry just to type it, think about it again...)  It just wasn't like he was a member of the family, we didn't know *HIM*, because all we could know was his condition.  He couldn't let anything else come through.  It's so sad, really. 

BUT it's not that way anymore.  He is a happy, vibrant little boy.  He's got the energy and strength of a bull, and a will to-boot!  And I'm so thankful that he's better.  He still has some difficult health challenges, but atleast they're somewhat manageable now. 

I am just still trying to figure out how to deal with my own emotion from the first 14 months of his life.  Not toward him, but others.  Also, since Denver, I've been tossing around the idea of making a scrapbook of Nolan from before we went, during the trip and after.  Sometimes I think it's a morbid idea, but other times I think it's important we not forget that wilderness experience that we went through (more like a desert experience, really).  I don't know, it's still something I am deciding on.  I don't like to look at those pictures from last year - it's really tough.  But it's our reality and I suppose we shouldn't just sweep it under the rug.  It brought our immediate family much closer in the end (DH and I and our kids).

Well, I guess I'll sign and finally post this entry (if anyone's still reading at this point! LOL)

~Lindsay

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Apr. 13, 2007 - You know your the parent of a food-allergic child when...

• The phrase you say to your child most often is, "WHAT DO YOU HAVE IN YOUR MOUTH?!?"
• You spend more time on food allergy message boards than anywhere else on the net
• You jump for joy when your food allergy cookbook arrives and devour it like it's a novel
• You make trips to the grocery store *just* to read food labels
• Your three-year-old can give a dissertation on what foods have diary or wheat in them
• You have Obsessive Compulsive Disorder when it comes to cleaning the kitchen floor
• You are shocked when you meet families that don't deal with *any* food allergies - to you, *they* are the weird ones!
• You cringe at the sight of another child drinking cow's milk
• When dining at a restaurant, you give a whole new meaning to the phrase 'special order' (or, like us, you just don't eat out anymore!)
• 'Don't leave home without it!' - refers, in your case, not to your American Express card, but your Benadryl and Epi-pen Jr!!

 Lindsay

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Apr. 3, 2007 - Eczema-blogger Update!!

First, a big thank you to all the wonderful comments I've gotten in the last few months!  I forgot my password for my blog and had a pretty tough time finding someone that could help me out!    PLUS, I previously had my settings so that I'd get an email for every comment, and I haven't gotten any emails from HSB since december, so I didn't even know they were there!    Needless to say, I did get some help finally, and I was suprised to find so many comments here that I had not known about.  Somehow my settings got changed.  Anyway, You're all so sweet, and I really appreciate those of you still wanting to know how our Nolan is doing.  So...on to that!...

Nolan has been home from National Jewish Hospital for almost 4 months now.  They have been 4 months of challenges, definitely, but now we are dealing with challenges that do not take such a huge emotional and physical toll on Nolan or on our family.  He does not have much variety in his diet, due to the huge amount of food allergies he has.  But I am realizing that is more of a frustration to me than it is to him!  We are still trying new foods every few weeks (as long as he's healthy), and so far we've been able to add bell pepper and carrot to his diet.  I have a lot to learn about creative cooking, trying to figure out how to make things with the limited things he can eat. 

Nolan was drinking Rice Dream brand rice milk when we came home in December.  But then last month we learned of the cross-contamination issues with this brand (and all the other brands), that there are traces of soy, dairy and nuts in the milk.  So we began making our own rice milk, which turned out to be easier than I thought.  When we switched to homemade, Nolan's sinuses cleared up (which had only been a problem since our visit to NJ), and he lost a lot of edema (what I had been mistaking for just chubbiness).  So, he was definitely picking up those traces.  He is SO allergic to dairy, it's unbelievable. 

He had a bout of bronchitis which required some pretty heavy medical intervention, but recovered pretty quick.  Then a nasty eczema flare from coming off the prednisone he needed for the bronchitis.  And THEN...the spring weather hit.  It became blaringly obvious that he had seasonal allergies and with more time outside, the more nebulizer treatments I had to give, the worse he was sleeping, and I couldn't stop him from rubbing those itchy eyes! 

So, a visit to the allergist yesterday, and he's now diagnosed as asthmatic, and been put on daily Pulmicort treatments, which is an asthma preventative medicine.  And he's also got a daily antihistamine, atleast during the season.  We will probably have testing done to see what his specific outdoor allergies are, so that we can know if there might be a season that we can leave the antihistamine for a while.

So all this comes with some major mental adjustments on my part, as I am very much a naturalist, and only take my other (healthy) kids to the doctor when I can't figure it out for myself!    That is our rule, but Nolan is definitely the exception to the rule and an example of why modern medicine can be a blessing.  I don't like having him on a daily inhaled steroid, but the kid's gotta breathe, and weighing the risk-to-benefit ratio, it's definitely what we have to do.  ....Now we just have to figure out how we're going to afford it, as one month of Pulmicort treatments costs a whopping $200!!   (no, our insurance doesn't pay prescriptions).

So, anyway, here's a couple pictures of our medical marvel.  As you can see in the first, which was before the spring weather hit, we've been able to maintain his skin and he's still lookin' good!  The second shows him using his nebulizer yesterday (skin's a little irritated b/c of the weather).  At 18 months, he's so big and likes to hold it himself.

Lindsay

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Jan. 8, 2007 - Nolan’s Journey at National Jewish

We checked in at National Jewish Medical and Research Center in Denver on the morning of December 4^th, and after several interviews with the medical staff, we were off to do his first 20 minute soaking bath and wet wrap. This consisted of slathering him in creams, a layer of wet pj’s over that, and a layer of dry, thicker pj’s over that....Oh, yea, and a warm blanket. That was followed by a good nap...better than he’d taken in quite a few months! The ‘soak and seal’ as they call it, was done 3 times daily and is quite labor intensive. After 2 days the visible improvement was amazing, though it did take a full week for him to be completely clear!

Once Nolan’s back was clear, we were able to do skin testing for food and environmental allergies. We were then able to start food challenges, where they give him a specific amount of a specific food to eat in the hospital and monitor him for reactions. He challenged sweet potato, apple, pear, broccoli, beef, corn, potato, rice and oat with no problem. He reacted to pork, which was a little frightening. For potato, they made fries especially for him - hand-sliced and fried in corn oil! He was excited about that!!

He’ll need to do more food challenges under medical supervision in the future, and after a year will be able to re-test his known food allergies ( milk, wheat, chicken, garbanzo bean, peas, pork, egg, nuts/tree nuts, fish/shellfish, soy) to see if any of them have improved. We are also to be keeping an eye out for asthma, as the chances of developing it are high in kids like Nolan. He did have two wheezing episodes just days before we left for Denver, but none since then! PTL!!

Thank you for your prayers through this time, please continue to pray his recovery stays strong! He is such a happy boy now!!

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Nov. 26, 2006 - We're headed to National Jewish!!

Hello. I know it's been a while since I've updated, and I've been out of touch with so many of you.  Between caring for our youngest, among three other young children, trying to start a home business to keep up with medical costs and increasing debt, I just haven't had much time for blogging!  I do so miss it, and I so appreciate the comments that are left, reminding me that there are so many out there that I don't even really 'know' that are praying for us and wanting to know how our baby is doing and what is going on.  I am going to bring everyone up to speed, but just so all the information is here without having to go back and read all the other 'eczema-blogger' posts, a brief synopsis is as follows:

At one month of age Nolan developed a rash on his face that we assumed was the typical baby acne. Then it started spreading, first up over his scalp and then all the way down his body. And it began to ooze. We knew this was not normal, but were able to get it under control after I removed splenda from my diet (Nolan was breast-fed). But the eczema began to reappear on his cheeks and hands a few weeks later, and it just slowly got worse and worse. Finally at about 4 months of age, what we knew from previous experience with the other kids’ eczema was not helping Nolan, so we went to the doctor. Many doctor visits, steroid creams, and other creams later, it became more and more apparent we were not dealing with typical eczema, and we were not able to pinpoint the underlying issues. The itching was unbearable, and when Nolan figured out how to scratch at about 5 months of age, that’s when the nightmare really hit full force. We could not ever leave him alone. He cleverly figured out how to scratch with/on just about anything. He could not sleep because he would wake himself with the scratching. We began taking shifts with Nolan at night so that at least one of us could sleep in 2 or 3 hour increments at a time. And now it’s been that way for 6-7 months. In August Nolan scared us when he almost stopped breathing, an anaphylactic reaction to something he had eaten. That landed us in the ER. His reaction was so severe that they admitted us to the hospital for observation. Then they sent us home early because he was reacting to the chemicals in the sheets/blankets, etc. We were referred to an allergist for testing. The test results concluded he was severely allergic to every food they tested him for, and he has an abnormally high IgE count (<20 is normal for his age, Nolan’s is 20,000), which tells us his body is in constant ‘allergic, fight’ mode and reacts to anything and everything, including food, chemicals, fragrances, supplements, etc, with an overtly allergic response.

That brings us to today. I have been working to get Nolan into the Pediatric Day Program at the National Jewish Medical and Research Center in Denver, Colorado. This is the world’s leading hospital for allergies, asthma and immune disorders. It is a 2 week outpatient program that comes highly recommended from other parents I have met in support groups; parents that have been where we are with Nolan. He will be assigned a doctor, nurse, and allergy fellow for the entire course of his program. He’ll be going through further testing, treatments, and we are hoping they will be able to nail down a diagnosis of some kind. He is now on the schedule to begin the program on Monday December 4^th.

Please Pray for us!  My DH cannot take 2 weeks away from his work, so I will have to go out there with Nolan alone. It is a lot for me to handle, especially considering he does not sleep at night. Please pray for wisdom for the doctors, for peace and strength (mental, physical and emotional) for me, and for safety in our travel. Also pray for DH and the other DC, as this will be a long time without Mommy!

A HUGE thank you to everyone for your prayers. We are both excited and nervous about this, but are hopeful that we will better know how to handle Nolan’s condition after this trip.

Lindsay

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