Our FOUR Little Ducks (formerly Our Three Little Ducks :)~

Big News for Arie!

2008-10-08T22:54:00.001-04:00

Well, today we had our "eligibility" meeting for Arie at the county's elementary school to see if he is eligible for their special ed pre-school. This will sound strange to some of you, but we were REALLY hoping he was eligible. We knew he would be close, but not sure if he would test low enough to qualify (but again, we knew that he wouldn't test well, so our fear was that he would just barely test out of it which would mean he wouldn't get the services he needs).

Anyway, he had to score low in 1 out of 5 areas to qualify and he scored low in 4 areas. So, next year he will go to school from 8am to 1pm and recieve special ed services, speech, OT, PT, and psych. It will be GREAT for him. Until then he will meet with the special ed teacher a couple hours a week. The goal is to have him caught up by Kindergarten so he can be mainstreamed into a "typical" class.

Ben went to this meeting and had a hard time hearing the results . I've been the one at most of the other evals/meetings/therapies because they are during the day, but this was a biggie. Basically there were 6 profesasionals around the table (the principal, speech therapist, psychologist, special ed teacher, and social worker). They had all evaluated him and had scores, and they took turns telling us what those scores showed. It was very hard to listen to... after all, NOBODY wants to hear that there child is delayed... but for Ben it was especially hard because he hadn't ever heard it from anyone other than me (relaying what others had said).

Anyway, I'm SO THRILLED that he will go next year! And his nunna (Elaine) is SO EXCITED that her baby brother will go to her elementary school.

It's been SUCH a long road, but I can see that light at the end of the tunnel now!!!

Phabulous Photography!!

2008-09-29T23:00:00.009-04:00

I just wanted to post a link to a GREAT photographer. She did my maternity photos, and photos of Arie (a few are above). When you enter the site, click on "portfolio", and then "future little people". There are a few photos of me (1st, 3rd, 4th). Then go to "the adored ones" and the 4th down is of me and Arie.

She's in VA, so if you ever need a photographer, CHECK HER OUT at www.dominiqueattawayphotography.com

Yes, yes, I'm still alive... and we have a new baby!

2008-09-15T21:43:00.005-04:00

Well, to put it bluntly, having 4 kids is KICKING MY ASS! I've been so busy, so the last thing on my priority list is getting on the computer. I have to fit eating in somewhere!

My new son, CIAN LEO was born late July. His name is Irish, and is actually pronounced "KEE-an". He is so sweet and he LOVES his siblings. He's 2 months old now, and is smiling at us and beginning to coo. Very sweet.

Two weeks ago we had a scare though. He developed a high fever and barking cough, so we went to the ER. He was immediately admitted, and they ran ever test under the sun. He had blood cultures and labs drawn, he was catheterized, and he had a spinal tap. After two days of IV antibiotics and negative test results he was discharged. Apparently it was all just a virus. Poor baby :( He's doing much better now.

Arie is adjusting well to his new baby brother. There has been NO jealousy really. I'm very proud of him. We've started the evaluation process to get Arie into the special needs preschool. We're fairly sure he'll qualify. Our final meeting to determine eligibility is in early October. The preschool would help him SO much, so our fingers are double crossed. Here's some shocking news: ARIE IS EATING LIKE A CHAMP!!! Just recently he has started eating pretty much everything. In fact, at some meals he eats more than Micah! I don't know what happened, but it was like a switch was flipped in him. It amazes me to hear him ask for food now. It's so wonderfully strange! He is such an angel. I hope the food battle is over for good. We wont have his feeding tube removed for a year or so though. We need to make sure that he continues to eat and grow before we remove it.

Micah and Elaine are doing great as well. Elaine is happy to have a new baby brother to play with, but she has put her request in for a girl. I've told her that she's going to have to be happy with three boys 'cuz I think we're done! Micah tells me constantly that he loves "baby Cian". He's finally ready to potty train (at 3.5 years old! ugh!), so HOPEFULLY I won't have three in diapers much longer.

I'm thinking about returning to work in January. With all the medical bills, money is tight. The LAST thing I want to do is go back to work, but I need to. I can only work once a week, but it's better than nothing. It will be good for me to get out of the house anyway.

I'm hoping things settle down soon. I'm sure they will. I REALLY need sleep. The baby still wakes every 2-3 hours, and Arie is still up for an hour or two in the middle of the night.

Anyway, it's 10pm, and I'm off to bed. Night night!

AMAZING ARIE UPDATE!!!

2008-05-08T12:24:00.000-04:00

So yesterday was Arie's 2 year check up. When he had his feeding tube placed in September of '07 ( just 7 months ago) he was WAY below the growth charts in height AND weight. He was in the 0% for both, and was malnourished (because of his refusal to eat).

As of yesterday, he is now in the 75% for HEIGHT, and the 45% FOR WEIGHT!!!!!!!!!!!!!!!!!!!!!!

I was TOTALY in shock! It's amazing what a little nutrition can do huh?!

Although he's doing a little better with eating, he is still tube fed one meal a day, and then fed 1/2 of his daily calories during the night. He will eat yogurt now, most fruit baby food, sweet potato baby food, and carrott baby food (all stage 2). He also likes chips and french fries (though I don't like to give him those).

We have our first appointment at John's Hopkins on June 19 to have him begin their feeding program. Their program is 2 months long though, and we don't live near there, so I don't know how we're going to pull that off yet. On the 19th he is just having his initial eval, so we will get the dates for the 2 month stay sometime around then.

(If you'll remember, we were going to do the Children's Hospital feeding program in Richmond, but they ar having lots of problems right now and their program isn't doing too well).

Anyway, I'm THRILLED that my little man is turning into a BIG man! His eating problems (and other problems) are nowhere near gone, but at least he's healthy now!

TESTOSTERONE WINS!!!

2008-03-07T16:43:00.003-05:00

We found out today that we're going to have another boy!!! I can't believe I'm going to have THREE BOYS (and a girl) !!! AAHHHH!!! And it is MOST DEFINITELY a boy. In fact, Ben has been calling him "John Holmes". There was no mistaken those parts!

He's measuring well, and looks healthy. We took Elaine with us to the sonogram. Poor little monkey cried when she found out :( I can't blame her though... I would cry too if I had to deal with three little brothers.

Now we're on to the big task of picking out a name. We had our girls name all lined up ("Bryn"), but obviously we need to change it! We are open to suggestions if you have any.

Arie's developmental evaluation was today.

2008-02-29T17:07:00.002-05:00

So today was Arie's second Early Intervention eval (he had when he was under a year and was about 6 months behing then). Quick history... Arie's Korean mom drank 2-3 shots of sojo per week. Not a TON, but after more research I have learned that poor nutrition can GREATLY effect how a fetus reacts to alcohol, and I'm sure that the nutrition status of his Umma (Korean mom) was not great.

I always see lots of "attachment" stuff in relation to international adoption, but nobody really EVER talks about alcohol exposure which is very common for our kids, and may be cause for lots of the problems I see and read about in the adoption community. PLEASE read below about Arie and, if your child was exposed to alcohol in-utero, read the CDC check list I provided. Let me quickly make it clear that I don't fault/blame Arie's Umma for drinking. I have never lived in her shoes, and I'm sure she did the best she could with the situation she was in. I, personally think that FAE/FASD/FAS needs to be talked about more in relation to adoption(assuming there are others whose children are coping with it) because it is a medical diagnosis, and not something to be ashamed of or something that needs to be hidden. Just my opinion.

Anyway, we have so many issues with Arie including:

-difficulty sleeping/ poor sleeping pattern
-eating aversion (as evident by his feeding tube :? )
-MAJOR hyperactivity
-clumsiness (he runs and falls, is off balance, trips, and basically just flits -about like a rabbit on crack :roll: ).
-irrational behavior/tantrums
-difficulty calming down from tantrums
-self harm such as hitting himself, pulling his own hair, scratching his face

All of this, once again, leads to a possible diagnosis of Fetal Alcohol Effects (basically the same as Fetal Alcohol Syndrome without any of the physical features). We need to have him evaluated by a geneticist (from what I've been told) to get an official diagnosis, but he is probably still too young for that.

Here is a link for more info on Fetal Alcohol Effects or Fetal Alcohol Spectrum Disorder from the CDC: www.cdc.gov/ncbddd/fas/fasask.htm

And here is a list of symptoms/signs from the CDC:

Small size for gestational age or small stature in relation to peers
Facial abnormalities such as small eye openings
Poor coordination
Hyperactive behavior
Learning disabilities
Developmental disabilities (e.g., speech and language delays)
Mental retardation or low IQ
Problems with daily living
Poor reasoning and judgment skills
Sleep and sucking disturbances in infancy

Ok... onto Arie. Well Arie (now 22 months) was assessed as falling between a 12month - 18m level, so he was shown to be functioning at a 15m level with global delays in social, gross motor, fine motor, speech, feeding. There were some things between 12-15m level that he couldn't do, and some between 15-18m that he could do.

They are going to do a PT eval because of his clumsiness and poor balance, but most likely all of that (and everything else) is due to attention/ lack of self-regulation/ hyper activity/ sensory integration.
So I guess we're in for lots of Occupational Therapy in addition to all of the Feeding Therapy (which includes speech, and Psych) that he's already getting. AHHHHH!!! :shock:

That's pretty much it. They are also going to test his hearing because of the balance problems, but I'm fairly certain the results will be normal.

He is such an energetic happy boy most of the time. I hope that I am giving him everything he needs to succeed in life. It's hard because I'm scared that I'm missing something. UGH!

Thanks for your continued prayers and support the past year +. It's been a bumpy road, but hopefully he will soon be getting all of the services that he needs.

Attention Mr. Pepto

2008-02-17T20:37:00.004-05:00

Who's brilliant idea was it to make Pepto Bismol HOT FREAKIN' PINK??? Let's just think about this for a second. Your sweet little daughter is complaining of a stomach ache. After dragging your exhausted butt out of bed (where you've been laying for all of 3 minutes) you find some medicine that may or may not help, but will at least stop the whining for a bit. After giving your sweet child the brightly-colored-flamingo-pink-liquid you return to bed and fall fast asleep.

Fast forward to 5:00 a.m. In walks your sweet child saying that her "throat hurts" (huh? throat? What happened to "tummy"?) After pondering what to do for about 5 seconds your sweet child turns into "Reagan" from The Exorcist movie and projectile vomits ALL OVER YOUR BED AND FLOOR. Thankfully the sore throat is gone (because 5 year olds can sometimes get their body signals mixed up thereby thinking nausea = throat ache), but now you have a flourescent mess to clean up. After scrubbing the stains on the floor three times with LOTS of Oxyclean, the hot pink mess has finally turned into a nice subtle pale pink. At least it matches my room now.

So to the makers of Pepto Bismol, I would like to offer a suggestion. CAN YOU PLEASE MAKE CLEAR DYE-FREE MEDICINE??? Isn't that common sense???

Leave it to me.

2008-01-15T22:43:00.000-05:00

So last night I got up to pee at 3am. While leaving the bathroom I walked right into the door frame, broke my toe, and fell to the floor crying.

Off the the ER I went...they know me now. Turns out I "spiral fractured" my 4th toe, and it's so bad that the doctor wants to put pins in it. He said we can wait a week and see how "buddy taping" it goes (where you tape it to a non-broken toe), but if it's not much better in a week, I have to have surgery.

I'm on crutches and I have to wear one of those blue-velcro-shoe-thingies on my foot. Here is my question to ponder:

Have you EVER known someone to break a TOE and need surgery for it???? Ever??? Leave it to me.

Aside from waking to pee a hundred times a night, and walking into walls, my pregnancy is going fine. I"m still getting sick on and off, but things are much better now. I've lost 4 lbs, but that's typical for me. I only gained 18 lbs with Micah and he weighed 8 lbs+. I'm 11 weeks now... this pregnancy is FLYING by to me. Although I've been SUPER sick with nausea I really enjoy being pregnant. I'm sorta sad that this is the last one (though I'm VERY content with the idea of 4 kids!).

I have yet to make an appointment with the breast surgeon to discuss the "mass" seen on the MRI. I think I'll wait until after I'm 12 weeks. I don't really know why, it just feels right to me.

I worry about how Arie will feel once he's older and understands that he is our only adopted child. I have a hard time imagining myself in his shoes... it's just not possible. I don't know. I pray it's not as hard for him as I think it might be. Only time will tell.

I realize this post is all over the place, but I'm on percocet, it's 11pm at night, and I was awake all of last night trying to ignore the throbbing in my foot. I'm off to dreamland now!

And now for the BIG NEWS!

2008-01-01T23:13:00.000-05:00

Now that we've had a chance to tell all of our family, I can share with you all!

The day before Thanksgiving I found out that.... IM PREGNANT! Yes, the picture above is my 8 week ultrasound picture. We were NOT planning on getting pregnant any time soon, but we are excited. It took a couple of weeks for the shock to wear off, but it's gone now, mostly.

I'm due August 1st. I'm 9 weeks now, and I turn 10 weeks on Friday. I have no idea how I'm goin gto handle four kids all so young, but I guess I'll manage.

As for the breast biopsy, it had to be canceled because it's not safe for the baby to do an MRI. I will soon be meeting with a breast surgeon to go over my options, but my doctor thinks that he will just wait until after I deliver to do any further testing. Apparently things "look" benign, but because of my family history, they can't be sure until a biopsy is done.

So that's the scoop! Sorry I've kept you waiting for so long.

Tough as nails???

2007-11-26T20:35:00.000-05:00

You know that saying, "God only gives you what you can handle"?? Well, God must think I'm She-Ra because he has given me a LOT!!! Things just got VERY interesting in our lives. The breast biopsy had to be canceled due to some interesting circumstances. I can't go into detail yet, but things are SUPER crazy right now. When I'm able to tell you more, I will! I'm really upset that the biopsy won't be done, because if there IS cancer, we won't know now. But I understand why it had to be canceled. Anyway, I would still appreciate any prayers you can send my way!

I need your prayers.

2007-11-17T22:03:00.000-05:00

As you know, my sister was diagnosed with breast cancer at the age of 37 (she is a 2 year survivor now). Because of her history, and because my mother died at a young age from Ovarian Cancer, I get checked out by doctors quite frequently.

I had a breast MRI done about 2 weeks ago. On the MRI they saw a "suspicious spot" and recommended a "breast biopsy". So, on November 30th, I will go have as MRI guided needle biopsy of my Right breast.

I'm terrified. Not so much of the biopsy, but the results. I don't even want to think about it. After loosing my mom at 13 years old, I know how HORRIBLE it was growing up without her, and I FEAR for my kids. I know that I'm thinking too far ahead, but I can't help it. I'm worried.

I will update when I have the results. In the meantime, I hope you have a HAPPY THANKSGIVING. My sister had a Breast MRI done the day before mine and hers was "crystal clear" according to her doctor, so for that, I am thankful.

Blessings,

Ryan

HAPPY HALLOWEEN!!!

2007-10-31T11:41:00.001-04:00

Happy Halloween everyone! I hope you all have a great evening! Belle, Yoda, and Captain Jack Sparrow plan on getting (and giving) LOTS of candy. And their father, who is absolutely obsessed with Halloween, plans on scaring the $hit out of all of the neighborhood kids. He, by the way, is the one who carved the pumpkins. It only took him 3 hours to do. But that is nothing in comparison to the amount of time he has spent decorating the front of our house. We have spiderwebs (from the ground up to our roof), a graveyard (8 tombstones), a lit archway, PLENTY of bones and skeletons, a spinning hanging pirate/skeleton, a 6 foot tall animated pirate that moves and talks, strobe lights, fog machines, dry ice, fake blood, and more. I will do my best to get pictures, because it truly is ridiculous BUT very cool!

2007-10-19T14:40:00.000-04:00

Arie's up to 21 pounds 13ounces now!!!!!!!! Can you believe it??

2007-10-16T13:23:00.000-04:00

20 POUNDS NOW!!! I'm so happy!!! He's by no means "chubby", or even remotly big, BUT I am starting to be able to tell a difference. 12 month waists are ALMOST fitting!

He's getting bigger!!!

2007-10-11T16:50:00.000-04:00

I forgot to post this picture earlier... this was pre-surgery, but Naso-Gastric tube and all, he kept smiling!
Arie earlier this summer on his first bike.

So, we've been home for a couple of weeks now, and I'm THRILLED to say that Arie has already gained 2 lbs!!! He's up to 20 lbs now. In the past (pre-tube) it took him an average of 2 months to gain 1 lb, so 2lbs in 3 weeks is a HUGE improvement!

We had lots of problems the first week. Apparently we had a defective tube and the port would become detached from the end of his tube feed bad and spill tube feed/ gastric contents everywhere. We were bathing him in the middle of the night almost every night, changing sheets like crazy, etc etc etc. One night I ended up bathing him 3 times because of it. This was the last straw, and I finally called the doctor. We went in, and he switched out the end of the tube (where the ports are) with a new section... no leaks since! I wish I had gone in sooner :(

Thanks God we have not had any issues with Micah or the dog yanking on it. (I cringe just to think about it). Arie's next surgery is scheduled for December 5th when he will have a Mic-Key button placed. (A Mic-Key is is skin level so there won't be a tube hanging off of him at all times... only during feedings).

Well, I'm off to tend to Micah who's Asthma is acting up. Ahhh.... the life of a stay at home mom. :)~

Home again, home again.

2007-09-23T18:50:00.000-04:00

Right before surgery with a naso-gastric tube going down his nose into his tummy.
Right after surgery, still out from anesthesia.
Back in his hospital room.
Close up of his belly.
Oma and Opa visiting their youngest grandson
Arie came home on Saturday. He's doing MUCH better and seems very happy to be home. I think adjusting to the new feeding tube is more of an issues for mommy and daddy than for him! It's pretty time consuming, and I feel like all I ever do is feed him either by food bottles, food by mouth, or food by tube.

Pain wise he is much better. We're just giving him Tylenol, Zantac, and his antibiotic now (through the tube... a HUGE blessing for a baby who HATES meds!).
We've already given him a few feedings, but the one last night (during the night) was AWFUL. The tube became unattached over night, so he woke up SOAKED with liquid. We finally figured out what we did wrong, so hopefully that wont happen again. He gets fed via. tube after every meal, and all night long.

My biggest fear is that he will roll around all night long and either strangle himself with the tubing or yank it out. Ben's biggest fear is that our really really stupid English Bulldog "Gertie" will see it and think it's a toy. Yuck.
I'll just keep my fingers crossed about all of that.

Update... still in the hosptial.

2007-09-20T23:24:00.000-04:00

Arie is still in the hospital... he had surgery today (this AM). Everything went well, his endoscopy was normal, and he now has a PEG feeding tube in place. He's on Morphine for pain. Hopefully he will be discharged Sat or Sunday.

We did learn, however, that they want Arie admitted to an inpatient feeding program for anywhere from a couple of weeks to a couple of months. There is a great hospital in our state with a wonderful feeding program that we (and the doctors) are looking at. Apparently the rest of us would stay at the Ronald McDonald house. There is no rush to do it, so perhaps we will do it over the summer. I just can't imagine leaving Elaine and Micah for more than a couple of days. It's been so hard being away from home these past couple of weeks (between my hospitalization and Arie's).

Please keep up the prayers that all goes well. I have LOTS of pics, but I've gotta run, so I'll post them later next week.

To the hospital we go... again.

2007-09-17T20:39:00.000-04:00

Sigh.
Well after my first hospitalization post-tonsillectomy, I came home only to be met with the stomach flu. Needless to say, I ended up back in the hospital for a grand total of (in 1 week) 3 ER visits, 2 separate admissions, and 3 nights on the unit. I came home Saturday. What a horrible horrible week.

But the fun doesn't stop there, folks. Tomorrow (Tuesday) Arie will be admitted to prepare him for surgery on Wednesday. That will most likely be followed by three more nights in the hospital. Unfortunately the hospital he will be at is about 1 - 1.5 hours away from our house, so I won't be able to come home much at all to see my other kiddos. It's going to be a hard few days. I'm so scared for Arie, but confident that he will do alright. Prayer would be appreciated!

I'll update when we get "released"!!

2007-09-12T19:02:00.000-04:00

I went back to the ER yesterday afternoon and was admitted. I was throwing up all evening. Turns out I have the stomach flu on top of the tonsillectomy, so keeping pain meds down and keeping myself hydrated was not an option. I stayed last night and was supposed to stay tonight too, but we don't have any help at home with the kids. Our neighbors have been lifesavers, but they all have kids of their own and obviously aren't able to just STAY at my house. My in-laws have a bar-b-q or something to go to and apparently think I should be feeling fine by now, so they aren't offering any help. Don't even get me started on that right now.

Arie will be having his feeding tube placed a week Friday. We were going to do it tomorrow, but I'm still in too much pain to devote all of my time to him, and Ben has to work this weekend to make up hours he's missed this week because of me. Arie will be in the hospital for 3-4 days. Lets just HOPE I'm better by then. From what I hear (from other adults that have had their tonsils out) the severe pain lasts about 2-3 weeks and then tapers off.

I'm off to take my next dose of meds!

Oh the pain.

2007-09-11T11:09:00.000-04:00

If I was able to choose natural childbirth vs. an adult tonsillectomy, natural childbirth would win (and yes, I've experienced both). Lets just put it this way. I have been on enough pain meds to tranquilize a giant horse. In the PACU after my surgery on Friday I was given Morphine, Demerol, Dilaudid, Vistaril, Lortab, and Versed... plus a few others that I don't remember. Those eventually got my pain level tolerable so that I could go home.

Well, now, 4 days later, the Demerol and Lortab I'm on are making me vomit. So last night I went to the ER because I had NO PAIN control because I was throwing up all my meds, and I was beyond dehydrated. So I got an IV and was given Zofran (for nausea) and more Dilaudid. I was also given the option of being admitted, but since I have three kids and not much help from family, I "chose" to come home. I was given a new prescription for Oxycodone... and with that given new hope that my pain would be controlled AND I would be able to keep down whatever I manage to ingest.

At 2am I woke up in HORRIBLE pain. So bad that I could hardly breath. The oxycodone isn't' helping at all. I might as well be drinking water. So here I am, back on the meds that make me nauseous... the Lortab and Demerol. I'm just waiting to puke again. I'm so so miserable. I have the kids at home with me (minus Elaine who is in school). The ER doc said he would admit me at any time if I came back in because of the pain... problem is, dogs don't make good babysitters and I don't have any family that cane stay overnight for a couple of nights. Ben doesn't have any PTO left at work, so basically I'm up shit's creek without a paddle.

At least with natural childbirth it's over in a few hours.... my doctor told me this morning that I can expect to be in this amount of pain for 7 - 10 days. Only 3-7 days to go. Oh, and FYI- tonsillectomies are WAY HARDER on adults than children... so if you know anyone who will be getting one as an adult, HELP THEM OUT A LOT!!!! The amount of pain involved is unimaginable.

Fetal Alcohol Spectrum Disorder

2007-09-08T22:54:00.000-04:00

After spending more and more time researching Fetal Alcohol Spectrum Disorder, it is becoming clear to me, my husband, and Arie's doctors that this is, in fact, the culprit to his lack of growth, feeding issues, difficulty sleeping, mild delays, and raging tantrums. He fits the mold perfectly.

While I'm super sad to know that this could have been prevented, I'm happy to at least have an EXPLANATION for his behaviors. I feel like now we have a starting point and we know which direction to take with help and therapy. Although Arie's birth mom drank alcohol during her pregnancy I hold no ill feelings toward her of course. In fact, we were open to alcohol exposure. Perhaps she was unaware of the possible outcome of repeated alcohol use, or perhaps it is social custom, perhaps she needed to drink to cope with her life situation at that time... who knows. All I know is that I'm blessed to be the one to love him daily and help him learn to work with his issues.

Anyway, I'm trying to find some good books to read about FASD (Fetal Alcohol Spectrum Disorder), FAE (Fetal Alcohol Effects), or ARND (Alcohol Related Neuro-Deficits). Any good links about this would be appreciated too! Also, are there other families out there coping with this?? I realize that some of you may want to keep this part of your child's "story" private, but I tend to look at it with a medical perspective. After all, it's a diagnosis that can effect many aspects of a persons life. I also don't think it's something to be ashamed of or hidden. I think it would be great if the families coping with this diagnosis could talk/ share stories/ share ideas and learn from each other!

Failure to Thrive, and a whole lot more.

2007-09-05T15:42:00.000-04:00

Baltimore Aquarium September 2007

I have SO MUCH to write about... I'm just going to re-cap our summer, and then get into Arie's issues!

What a summer. I have been running around like a headless chicken ALL SUMMER LONG! I'm glad it's finally over, and SUPER glad that school has started. We had a summer filled with vacations, swim lessons, cheerleading, summer camps, and of course a nice long visit to Grandma's house! It has been one thing after another this summer, so I apologize to all of my friends who I haven't kept in contact with (like YOU Kelley!!)... I hardly have time to pee.

Anyway, Elaine has started Kindergarten and is doing well. The first few days she had some trouble "listening" and was disciplined, but I think she gets it now. I hope anyway. She has some new friends, and she is fitting right in. She is cheering for the county now. She LOVES it, and she always gets to be the "top" for the stunts, so she thinks that's cool. The only bad side effect of her cheering is that she walks around all day saying cheers and chants to herself. She looks a little psychotic, but then, don't we all? She (and Micah) took a month of swim lessons. We started Elaine off in Pre-school II, and by the end of the month they had moved her up 4 levels to Level 4. She swims like a fish, she can jump off the diving board, she can retrieve objects off of the bottom of the deep end... she is amazing to watch!

Micah started pre-school today. It's just right across the street, so he knows everyone in his class really well. As expected, he did fine. He's had a pretty uneventful summer. He went to the ER a couple nights ago with a high fever (104) and LOTS of vomiting, but he's doing just fine now. He didn't do quite as well as Elaine in the pool. In fact, he cried A LOT and acted like he was dying... but we persisted anyway! He's such a big boy now, and he is FINALLY fighting back with Elaine. We always told her that "one day her brother would fight back"... well, the time has come! Unfortunately, his "fighting back" doesn't end with Elaine, and he has turned into a bit of a bully. Oops.

Onto Arie. Well... today was the "big appointment" with the pediatric gastroenterologist. We have been waiting for this for MONTHS. Arie is hardly gaining weight, and now he is not really growing much taller (he's 16 months old now and his W= 18 lbs, H= 29 in). We feel like we're not getting anywhere with the feeding clinic at Children's... they have sort of dropped the ball on Arie and he's continuing to fall off the charts.

Our doctor today was amazing. I started by explaining Arie's history (his in utero history as well as his medical history in Korea) and went all the way up to current time. I told him how we've been instructed to change formula a gazillion times, how we are no longer giving him dairy and soy (just IN CASE he's intolerant to them... we know he's not allergic), and how his stool is so acidic that is burns right through his skin. I also explained that I was really unhappy that he hasn't been tested for much. Yeah, Children's did some lab work and an upper GI/Barium swallow, but it didn't really tell us much. Why haven't they continued to look for a cause to Arie's lack of weight gain and his "Failure to Thrive" (which, by the way, is his OFFICIAL diagnosis).

So, the doctor told me the following (in so many words): He believes that Arie's eating issues ARE IN FACT behavioral (no surprise to us), and not technically "medical". He thinks that all of the tests we are going to do over the next two weeks will be negative... but we should do them anyway to rule out things such as Celiac Disease, Cystic Fibrosis and Crones Disease. Well, you ask, why does Arie have a behavioral eating disorder? Possibly because Arie was exposed to a significant amount of alcohol in utero. He doesn't have Fetal Alcohol Syndrome, but he does have Fetal Alcohol Effects. The thing with FAE is that there is no way to say FOR SURE that the exposure to alcohol is the culprit of his Failure to Thrive, but most likely (in Arie's case anyway) it is. So over the next two weeks Arie will have more blood work drawn, have an endoscopy (tube with a camera down the throat), and a sweat test (to rule out Cystic Fibrosis).

Because of Arie's eating problems, he is becoming increasingly malnourished. At one point, a few months back, he was "marginally" meeting his caloric needs, but now he no longer is. Even with all of the supplementing with Duocal and calorie boosting with his formula, he's not taking in enough. In fact, because of all of the carbs he's getting from the Duocal, the doctor is fairly confident that THAT is the reason for the acidic stool... carbs turn into sugar which then decrease stool pH. So, after all of the tests, we will be switching him to a different formula (perhaps Pediasure?). Currently Arie is 16 months old and still on Alimentum... an infant formula. Back to the malnourishment. Arie has ALWAYS had trouble gaining weigh, but he was still growing in height. That is a good sign. Well now his height is starting to taper off which means that he is moving further into a stage of malnourishment. So, in two weeks, Arie will be having a feeding tube placed in his stomach. This will allow us to insure that he is getting proper nutrition, and at the same time we can work with the therapists to get him to eat better/more. He would have the tube placed sooner (the Dr. suggested tonight!) but I am having my tonsils removed on Friday, and that's supposed to be a pretty painful recovery. Ugh.

Anyway, I know it sounds awful, but I am SO RELIEVED that he will be getting a feeding tube. It has been so hard to watch him melt away. Although some meals go great, many are a struggle filled with tears from both of us. I am constantly worrying about him and his health. I am at my wits end, and I just can't do it anymore. It has been a rough year trying to get him to eat. Unless you've lived it, you have NO IDEA how frustrating it is. Now that his height is slowing down (too much) I know this is the right decision. The doctor we are going to is one of the best in our area, and I just feel like a big weight has been lifted off of my shoulders.

He will be in the hospital for a couple of nights, and hopefully all will go well. The tube will stay in for a least a few months, possibly a couple of years... who knows. Basically is is inserted sort of near his belly button (a few inches over) and we will be injecting some form of liquid nutrition directly into his stomach. HE will also be able to eat normally too.

I'll be sure to post when I have a surgery date! Thanks for all of the thoughts and prayers! I'm so glad to finally see a light at the end of the tunnel.

UPDATE: Arie's eating nightmare continues.

2007-06-23T16:13:00.001-04:00

Well, yesterday we went to another feeding clinic visit. At (almost) 14 months old, Arie weighs 17lb 7oz. I cried. I was SURE he had gained more weight than that. He only gained 1 lb in 3 months. He will NEVER face forward in a car seat at this rate! He did grow about 3 cm in length though, so that's good. That's pretty much the only thing saving him from a feeding tube at this point.

Apparently though, he is taking in enough calories but still not gaining weight, so it's sort of a puzzle. We had blood work drawn, but naturally, somehow the results got lost. Children's Hospital can't find the results and the lab said they have "no record" of it. ARGH! The lab work is to check for metabolic abnormalities. They are also going to test him for Celiac Disease (a severe gluten sensitivity?). He has a few of the symptoms including failure to thrive and chronic diahrrea.

So, they came up with this whole new plan. They switched his formula from soy to Alimentum, which is super expensive, and they have decided to eliminate all dairy and soy from his diet to see if he has a dairy or soy intolerance (not allergy). Here is my problem with this... the ONLY fattening things he eats are yogurt, cheese, and butter! I have no idea how to pack on calories now. But, whatever. We are still concentrating his bottles (3 scoops of formula to 5 oz water). We also add powdered fat (called Duocal... also super expensive) to his bottles. In addition to that, we add a scoop of Alementum and a scoop of Duocal to every 4 oz. jar of food he eats.

They also want me to reward every bite he takes by turning the tv. on and off. For example, if he takes a bite the tv goes on... stays on for a few seconds (as a reware) and then gets turned off. If he takes another bit it gets turned back on again. Well, I just don't know how I'm going to do that! I have two other kids (2 and 5 y.o.) who are both HIGH maintenance during meals.

I'm getting so frustrated. He really is eating much better now and we've been working SO hard at it. I'm frustrated that he's "taking in enough calories" but still not gaining weight. I also feel like the feeding clinic is still focusing on getting him to eat and not looking hard enough for a medical cause. Granted his eating isn't great but it's better.

FYI- he drinks abotu 12oz formula per day, and eats about 12-16oz food per day. And he's 14 months old (I know I already said that, but felt the need to restate it!)

Anyway, I will keep you all updated. I just want an answer at this point... something to guide us, you know?

Thanks for listining!

Insight

2007-06-17T13:59:00.000-04:00

Taken From.. http://www.pactadopt.org/press/articles/straight.html

Straight Talk
by Liza Steinberg

For me, being adopted is part of who I am. It is a part of my life experience. I have heard much anger and defensiveness from adoptive parents when adoption is talked about in a negative way or compared to a negative experience. These voices usually say things like, "Adoption, for our family, was a wonderful experience," or "Our family was formed through adoption and to talk about that negatively is saying our family isn't OK," "Adoption brought joy to our family." These statements are all true but they are not acknowledging the whole truth of adoption. What has been left out is the loss, the pain of loss and the struggles of dealing with this pain and loss every single day and minute. This loss is the experience of the adopted person.

Before I was adopted, I was separated from two families, my birth mother's and my birth father's. Two sets of people with whom I shared physical traits, characteristics and mannerisms. Two groups of people who, as society tells me over and over, are the most important people in my life and with whom I will have the strongest "bond." In my case, I was also separated from something else: my culture and my race. These losses are with me every day. These losses are part of my experience. These losses have been the hardest and most painful things I have dealt with in my life. And they are huge.

When I hear adoptive parents being horrified at a comparison of their child's experience to something as horrifying as a war, I am horrified that they think it could not be that bad. When I hear someone say it is distressing to hear such a negative comparison to adoption, I am just as distressed to imagine comparing it to something great.

What I have discovered is that for many people it is not always OK to say these negative things about adoption. I think that people interpret the negative (real) talk about adoption to mean that I wish I weren't a part of my family. Or that I am not connected to my family. Or maybe even that my mom and dad did something wrong by adopting me. Or that it means that I am not grateful. But you know what, I am not "grateful" that I had to be adopted. I am not "grateful" that I have to struggle with the loss of my birth family and that identity. And I don't feel "wonderfully lucky" that I was raised in a culture different from the one I was born into. What I do feel is that I love my mom and dad very much. I do feel totally connected to them. I wouldn't trade my family for any family in the world and I don't wish they were someone other than they are. I don't wish that I didn't have to participate in family events (well... about as much as anyone) and I feel totally supported by my family.

My biggest wish in the world is that we could talk honestly about adoption. All aspects of it. I wish that we could acknowledge the wonderful gift it brings to all of our lives as well as the tremendous loss and the horrific fear and confusion. I wish that children growing up adopted could know that, as well as feeling grateful and blessed, it is OK and normal to feel angry, seared, abandoned, out of control and totally alone. Like "being kidnapped or taken prisoner by invading armies. Or forced to migrate to another country or separated from what you call home." Don't you think that if children knew that it was OK to have negative feelings, they might feel comfortable and safe expressing all of their feelings?

LOTS of PICTURES!!!

2007-06-04T10:37:00.000-04:00

Here are LOTS of pictures! Some are from Disney World, some from Elaine's preschool graduation, and some are just random pics. Enjoy!