Christmas fun

I love making things festive for my kids. They're enjoying the Christmas season so far--we had so much fun decorating our (fake) Christmas tree a few weeks ago, complete with hot chocolate, popcorn, and the classic movie "Rudolph the Red Nosed Reindeer."

I've been loving baking, too--fudge, chocolate mousse pie, triple-chocolate peppermint trifle. Mmmmmm.

Anna, Yosef and Biniam sang up front with their Sunday School class this past Sunday. Totally cute, and Yosef actually sang part of the song during the third service. (I'll post pics later I think.)

We haven't done our Christmas cards yet. Will we do them at all this year? Only time will tell!

Another day, another specialist :)

This morning (whose bright idea was it to schedule these appointments so early--oh wait, it was mine!) Kaitlyn and I met with Dr. Johnson, the immunologist/allergist we've been seeing. He took one look at Kaitlyn's skin and also pronounced it Atopic Dermatitis! He also feels confident that it is to blame for the multiple infections. He ordered blood work that will pinpoint what she's allergic to food-wise, and blood work that will see if she's zinc-deficient. (We had her blood drawn after our appointment so we should get the results in about a week. She was SO GOOD, hardly any crying at all, just at the very end.)

He said that there are really rare immune-deficiencies out there that would make someone prone to staph infections, but that he doesn't feel like he wants to get into testing for those (pretty invasive) because people who have them have repeat respiratory issues, pneumonia, etc., and Kaitlyn's healthy as can be. Not to mention, he said that now we have an explanation for the staph that fits.

Dr. Johnson's biggest concern is Kaitlyn's weight-loss. He said if she's not vomiting and doesn't have diarrhea then he really doesn't know why she'd fall off her growth curve. Some possibilities he threw out there were a fast metabolism, her getting ready for a growth spurt and needing more calories than maybe she was getting. Or, food allergies.

So, that's that. We'll wait for the results of the blood tests. It felt good to have the immunologist confirm the dermatologist's findings, and I'm so happy that we did some more testing. I'm experimenting with some Burt's Bees products and so far am happy with them. I guess I still feel worried about the weight loss, but she eats so well, is developing fine, has eight teeth, and never stops crawling around and playing, so I'm resting in the fact that for now, she's okay, and we'll keep our eye on it.

Thank you so much for all your kind words, prayers, and thoughts. We are blessed!!! (Oh and I just thought I'd share some pics of my sweet baby girl.)

Atopic Dermatitis

According to the dermatologist, that is Kaitlyn's diagnosis and accounts for all of her health issues lo these many months. This morning Kaitlyn and I met with Dr. Stewart who looked at her, listened to my stories and concerns, and said Kaitlyn has EXTREMELY sensitive skin, horrible allergies (probably tied in with food), and the reason for the repeat staph infections in the diaper area is that because Kaitlyn itches so bad, and scratches, the staph gets in there. She really wasn't surprised/concerned by the repeat skin infections and in fact prescribed a topical antibiotic to keep on hand in case it happens again and seems necessary. She said she didn't think we needed to do the orals so much, just topical.

I told her I was most concerned by the weight loss, but she really wasn't too worried about that either. I kept reiterating that Kaitlyn lost a good 12 ounces which is a big deal for a baby, but she said that that can be tied in with allergies/eczema as well. During the visit Kaitlyn was babbling and bouncing around and the doctor said she looks healthy as can be and therefore really doesn't suspect a zinc deficiency. The doctor asked me if Kaitlyn was pretty active, and I said yeah, she's always been squirmy and wiggly and loves crawling around. The doctor said her own son was big at first, then lost a bunch of weight and remained pretty small for his age, so it happens. Plus yeah, apparently allergies can affect weight gain or something.

I asked about Kaitlyn's foot, and Dr. Stewart said that honestly it sounds like Kaitlyn just has really, really sensitive skin. She prescribed an ointment for the eczema. She said it can be difficult to pin-point what foods I'm eating that might be aggravating it, so pay attention but not obsess over it. She also thought Kaitlyn should outgrow it.

I guess I feel cautiously optimistic about the diagnosis. I tried my darndest to convince Dr. Stewart that my baby was on death's doorstep, but she just kept saying that these things are the result of bad eczema/allergies, and that staph infections on the skin are to be expected if a baby's diaper area is scratched up badly enough (which Kaitlyn's had been. It was awful.) Tomorrow we'll see the immunologist, who I'm sure will order more invasive tests and I'm going to request he test for zinc deficiency. But if everything comes back normal, then it looks like my kid just has a nasty case of regular old eczema.

Little things...

...make me happy. Like:

1.) My Martha Stewart Living arriving today. Can't wait to put my feet up later and enjoy!
2.) I've got red potatoes boiling, fish marinating, fresh lettuce for a salad. I love when I take the time to prepare a nutritious meal for my family!
3.) Receiving Christmas cards from dear friends and family.
4.) My kids enjoying a movie, currently "Cinderella."
5.) Kaitlyn's smile and the fact that she zips around this house like nobody's business. Man I love that kid!
6.) Kevin just now arriving home...and the fact that he's off work from now until January 7th.

Off to hug the husband and finish dinner prep. Have a happy Friday night enjoying the little things!

Christmas and Africa

Christmas involves gift-giving, and it can be overwhelming trying to figure out what to buy for loved ones, co-workers, and those people who already have everything. I wanted to share a few unique gift ideas with you that are not only pretty cool but more importantly help Africa.





1). AHOPE Blend Cofee


A Washington-state coffee house makes this special blend of fair-trade coffee. $12.95/pound, and $1.50 goes to the charity AHOPE for Children, an Ethiopian orphanage caring for HIV-positive children. What a perfect gift for a coffee-lover, and a great way to raise awareness for this wonderful organization. (I'm currently sipping some right now and it's wonderful!)




2). BenefitOrphans.org


This website offers a variety of items from Ethiopia and Ghana, as well as some related books. All proceeds go directly to Adoption Advocates International's humanitarian projects. (AAI works in Ethiopia, Ghana, Thailand and China.) Anything from this website would make a wonderful gift for an adoptive parent, adopted child, grandparent, or the internationally minded. Fast shipping, too. (For those of you with children from Layla House, check out the amazing new book "Faces of Layla." A must-have--we just purchased ours recently and it is BEAUTIFUL.)




3). Our Day to End Poverty: 24 Ways You Can Make a Difference


This book comes highly recommended and makes a neat gift for a socially-conscious family member or friend. $14.95 from BenefitOrphans.org--and every penny goes to humanitarian causes.




5). Amani Ya Juu


Means "higher peace" and is an amazing sewing reconcilation project and home for women in Africa! You can purchase fair-trade items that these talented ladies have made and know that your money is going towards helping marginalized women in Africa work towards peace. (They hail from Rwanda, Ethiopia, Burundi, Congo, Uganda, Sudan, Kenya, and Somalia). I love the passport purses and the kitchen items! Their children's toys are adorable too!



6). Donations


Why not consider tacking a donation on in addition to a gift you're giving, or in lieu of one for that person who literally has everything and has a passion for humanitarian causes? Check out these cool gifts you can give in someone's name!
International Justice Mission--works to free people around the world from violent forms of injustice. Has been featured on both Oprah and Dateline. See their 2007 Gift Catalogue and give gifts like Advocacy or Aftercare.
AHOPE for Children--facility in Ethiopia that cares for HIV-positive orphans and assists families in caring for their HIV-positive children at home. With a minimum donation of $25, a card will be sent to the recipient saying a donation was made in their name. Besides a one-time donation you can give the gift of sponsorship of a child (for one year, $360), or choose to provide a school uniform and school supplies, holiday gifts, a new chalkboard for the classroom, etc.
Heifer International--their motto is "Ending hunger, Caring for the earth." Through this wonderful charity you can give the gift of an animal to a family in the world that will help provide sustenance for them. You can give heifers, ducks, water buffalo...the list goes on.
World Vision--you can provide anything from the share of an alpaca ($15) to education for a child.
(Some of these charities are faith-based, and some are not. Please don't let that deter you from giving either way--they are each doing amazing work and helping those who need it the most!)

Thanks Al!

First off I've been so blessed by your kind words, prayers, offers to watch my kids--thank you all SO MUCH! Kaitlyn's responding to the antibiotics (though of course not thrilled to be woken up around midnight to take them--this every-eight-hours business is brutal!), and the best part is that FINALLY, after MONTHS of battling an insanely itchy, red, awful diaper rash, it is responding to the steroid cream the doctor prescribed! It still itches her, however, but it looks better than it's looked in several months. I can't believe it, like I can actually see SKIN there now and not just red.

I've been doing a TON of research online the last couple of days, looking at immune disorders, obscure syndromes, etc. and thinking about Kaitlyn's symptoms in hopes of compiling some questions for when we see the specialists next week. Every syndrome I've found just doesn't seem to fit Kaitlyn very well. Recurring staph infections are a common symptom for a lot of them, but they all pretty much include lots of symptoms that quite frankly she DOESN'T have...strange facial features, repeat pneumonia, lung problems, heart problems, low T-cell count. In fact, for pretty much all of them, the most common indicators are things she DOESN'T have.

What I DID find, however, was something called atopic dermatitis (most common type of eczema)...for which she literally has EVERY symptom. Including recurring bacterial infections that are happening right where the aggravated, itchy skin is. Our pediatrician told us that her diaper rash that she's had for months is not itself bacterial, that a bacterial infection will hurt but not itch. He also said that he believes the bacteria is reinfecting that area because it's always so raw and ripped up. He tried treating it with anti-fungal creams a few times, but it didn't respond to them AT ALL, so now he's prescribed a steroid cream and it's totally responding. (Turns out atopic dermatitis is often treated with steroids.) Kaitlyn also has scaly, rough patches on her arms and legs, and currently her cheeks, and she's had cradle cap for months also. Guess what, those are all symptoms of atopic dermatitis. I have a history of allergies (pollen, pet dander, eczema), and we have some allergies/asthma in our families--and guess what, those are all indicators of atopic dermatitis. My pediatrician also is thinking about a possible zinc deficiency--which, indeed, can bring on dermatitis. Kaitlyn has EXTREMELY sensitive skin, always has, very susceptible to breaking out in a rash from detergent, heat, certain fabrics...also an indicator.

SO, I am about 99.99% convinced that even if there is some random immune problem going on, she has nasty eczema. I'm not sure why she's lost weight, although zinc deficiency can cause this (you can have a deficiency in spite of a proper diet--it can happen during periods of rapid growth, therefore it can happen to infants because they grow so quickly.) It can also cause your immune system to be suppressed. The weight loss does coincide with when she started crawling/eating solids and I wonder if maybe I wasn't feeding her enough solids or something weird like that? Although she's fallen off her growth curve, she is currently right about where Anna was on the growth curve. At any rate the weight loss makes me feel very concerned (the pediatrician too.) Though goodness knows that she eats/nurses a lot and has energy to spare!

Anyway those are my findings. I kind of feel like a dork doing all this "investigating", but I'm thoroughly convinced that YOU are your child's best advocate and just because you didn't go to medical school doesn't mean you can't be informed and play a large role in your child's healthcare.

Oh, and I'm so grateful that Al Gore came up with the internet! What would we do without this amazing contribution of his??? (Hee, hee.....)

I didn't check this box!

When you adopt a child, there's a form you fill out, placing a check-mark by special needs that you would be willing to accept in a child (and you feel like a real jerk while you're doing it too!) You can say whether you would consider a child with scars, deformities, developmental delay, HIV...the list goes on.

When you give birth to a child, there are no boxes to check. Provided everything goes well, you carry the baby for nine months and become a mother to the child God gives you. And you expect that this beautiful, wrinkly, cuddly baby will thrive and be well.

This past weekend Kaitlyn began showing more signs of infection, and her itchy diaper rash had still not gone away (and had become even more aggravated the minute we put Aquaphor on it), so today I took her in to see our pediatrician. He'd taken a skin culture during the last infection and we discovered that while it was indeed a staph infection, she is NOT colonized or infected with methicillin-resistant staph (or MRSA), which is very good. HOWEVER, she has yet another infection. AND she's lost weight and fallen off her growth curve.

I found out today that he's been doing research and is pretty well convinced that she has a rare syndrome where some part of her immune system is being suppressed. We're going to be visiting two specialists in the upcoming days: a dermatologist and the immunologist (again.) He says he's never seen anything like this and is completely perplexed, and is anxious to get more specialists on board to discover what the problem is. I'm not looking forward to the bloodwork (is there anything worse than holding your baby down during a blood draw?) but I AM looking foward to getting some answers...sort of.

The truth is I'm terrified. My little girl has not been fully well in eight long months. Not only has she not been well, but we don't know what the problem is. Not only THAT, but I'm now afraid to find out. Will it eventually be life-threatening? Is it serious? Am I equipped to deal with this?!

As I was sitting in the cry-room at church on Sunday with two other moms, I reflected on the fact that each of our babies has a health issue to deal with: one baby will need heart surgery, the other has spina bifida, and Kaitlyn most likely has an immune deficiency. It made me think of the Bible verse about Jesus and the man who was blind from birth. "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither this man nor his parents sinned," said Jesus, "but this happened so that the work of God might be displayed in his life." God has beautiful plans for these precious babies and He has made them just the way He wants them. He will give us strength and courage to mother them and love them and to meet whatever need they may have. May I rest in this peace that only comes from above!

Unfathomable

We went off to Missions of Charity, Mother Theresa’s orphanage...It was a scary place….there were dead bodies in body bags near the medical clinic and an area for children that housed hundreds of kids, many of whom were mentally retarded and ill with complicated childhood illnesses and deformities. It was a very hard place to visit and almost impossible to imagine that Des was there for even a month.

My two little boys lived there. For several months. I just recently came across this quote in an excellent article by an amazing woman who has transformed the way HIV-positive orphans are cared for in Ethiopia. We didn't visit this particular facility when we picked up our sons; it's hard to get an appointment and it's overflowing with orphans dying of untreated-AIDS, very sick with all sorts of secondary, opportunistic infections. I knew very little about it, and was thrilled when I saw that Dr. Aronson had visited, and I read on, anxious to know more. And then my stomach dropped.

I can't wrap my mind around the fact that this was my kids' reality for many months. My crazy, happy, healthy little boys who love Sunday School, pancakes, big trucks, and the movie "Sleeping Beauty". I'll probably never be able to fully process this part of their lives, and maybe that's for the best. Thousands of miles away, it all seems like a dream, like maybe they weren't actually really there. But I know otherwise.

I feel unbelievably grateful to Adoption Advocates International for the amazing, unparalleled work they do at Layla House. Because in a place like Ethiopia, two orphaned babies like Yosef and Biniam have no future. That's not me being dramatic, or exaggerating the truth to make a point. Our boys just happened to be in the (extremely) small minority of orphans who end up in the right place at the right time and therefore avoid starving to death or living an abbreviated life of begging or prostitution on the streets. God provided for them and I love to think of the amazing plans He has for their lives.

I recognize and am grateful that Missionaries of Charity was there for my little boys when they had nowhere else to go. I strongly believe they're doing an amazing work in a third-world country caring for multitudes of children dying of an incurable disease, and that these nuns are devoting their lives to this end, with not nearly enough resources. But I'm glad my boys eventually tested negative for HIV, were moved to Layla House and that they joined our family. It's what their birthmom had wished for, and every day I pray that I might live up to this calling, especially when I read words like the ones above. They make me thank God for His provision...and hug my sons a little tighter.

Theology + bodily functions

Anna: How did God make our poop?
Mommy: Ummm, I'm not sure.
Anna: He wore gloves, so poop wouldn't get on his hands!

World AIDS Day

Today, December 1st, was World AIDS Day. Yosef and Biniam's birthmother is HIV-positive and we sponsor two precious sisters at AHOPE who are also HIV-positive, ages 5 and 9. We got to spend a day with the girls (and many other children with HIV) when we went to Ethiopia. SO, AIDS is something that we think about often. Tonight at dinner we talked to the kids about how today is World AIDS Day, and Anna said our mealtime prayer and prayed a special prayer for Yosef and Biniam's "first mommy."

Here's an article that I'm sure I've posted before, written by a wonderful author and fellow adoptive mom of Ethiopian children from Layla House. Definitely worth the read!

What Will Become of Africa's AIDS Orphans?

And here's another one written by the head of World Vision. Good stuff.

Samaritans in the AIDS Crisis