Then and Now

Many are well aware that we have had an intense time since Sofie has been home.  We are still working on some very complex medical/feeding issues and we feel depleted and stressed just to start. Consumed by ounces and vomit I really neglected to see how far Sofie has come in less than 2 months.  The picture on the left is our "GOTCHA" moment!!! The first time we held our sweet girl.

The second picture  to the left is Easter morning, the day after the flight home.  Sofie was clearly overwhelmed and shell shocked!!!!

 Fast forward a 6 weeks later and I see a new girl!!!! We still have a LONG way to go in feeding and attachment (of course these areas are connected which makes the issue even more complex) but I can also see that she has come a LONG way in less than 2 months.  Most importantly she has a family that loves her and will continue to love her!!!!!!

Finally a picture

My camera cord is still MIA but I ordered a new one so hopefully some new pictures coming soon.  Here is a quick shot of the girls after making "Bulgarian Mud Pizza"

Sofie is coming along well!! She has gained over a pound on her hypoallergenic diet and her GI doc wants us to give her a regular diet minus the allergy list for a week.  He also changed one of medications.  We have to return for a weight check next Wed and then move forward with food or consider a short term feeding tube if she will require the hypoallergenic diet.  She is having tons and ton of fun and loves to play with her brothers and sisters. She is talking a LOT but not making much sense but we can pick up her versions of a few words.  She has been having fun with the water table and being Audrey's assistant for an imaginary game Audrey concocts!

Sofie Update

The days seems to fly by yet creep at the same time. It seems like eons ago that we stepped off the plane with a happy toddler!!!!

Sofie has struggled with feeding as a result of the eosinophilic esophagitis (EE).  It seems like every food we offered her body began to attach hence the laundry list of allergies.  We have made the decision along with her GI doc, allergy doc, and nutrition support team to remove food from her diet for a period of time and feed Sofie a hypoallergenic nutritionally complete formula called Neocate.  This is called an elemental diet and has a 97% rate of putting EE into remission.  I was (maybe still am) a little nervous that she would require a feeding tube to get the volume she needed to grow.  We started with only 2 ounces at a time less than a week ago and we knew she was missing calories but she was remaining hydrated.  As of today she is taking 6 ounces 6 times a day and we are hoping to drop a feed and bump her to 7 ounces 5 times a day. This will bring her to over 1000 cals per day and still allow her body to grow.   It is still not pleasant for her but each day seems less painful and her swallowing is improving. It is hard to say what will happen when she is off the oral steroids but we hope the thirst and appetite keep up once the prednisone is gone in 2 days.  It is too hard to predict how long we will continue this diet but studies suggest 4-6 weeks.  At that point we will start to reintroduce food VERY slowly and continue Neocate for the bulk of her nutrition needs. This is certainly a chronic condition and she will more than likely experience flare up in the future.  The important key is to get her body in a better nutritional shape so that it can better tolerate the flare ups in the future. 

It has no doubt been tough and it certainly brings me back to the newborn days of life revolving around feeding and napping.  Thanks goodness she is sleeping GREAT at night unlike a newborn.  There have been good things despite the overwhelming illness thrown at us. We are starting to see her strength improve and her gait is becoming more steady.  She is trying to say words and can mimic sounds words make maybe just not the phonic sound.  She is starting to become very opinionated and not afraid to voice her displeasure. She enjoys to spend time outside and has loved being held the last few days.  Sometimes I think she finally realized how much she missed out on and wants to be held all the time.  Baths are worlds better than the initial few days of terror.  Car sickness seems to be getting better (she has not puked in the car in a week). The finger sucking only happens in bed (it is the one habit that drives me insane and I redirect her during the day). The rocking is a little better but she still shifts from side to side when standing still and often in her bed. I mostly see the side to side rocking when she is bored or upset. It appears to be a habit and I honestly do not know if she is aware of it while standing.  We were able to have a developmental evaluation and learned Sofie is on average about equivalent to a 18 month old.  She is a full year behind developmentally maybe a little more in a few areas and a little less in few areas.  We just have to be patient as time moves forward and allow her to work on her own time frame. 

Home a Month!!!!!

So much has happened in 1 month it is hard to believe it has only been a month since we stepped off the plane in Charlotte with Sofie.

The month has been full and some days I feel exhausted.  It seems the theme around here is 2 days forward 1 day back.  Slowly we are making progress.  Sofie tends to have a couple good days then a terrible day and then we start the cycle all over (each time we are little better).  Sofie's diagnosis of
Eosinophilic_esophagitis has rocked our world .  We are left with more food allergies than ever imaginable (milk, oat, beef, peanut, string bean, white and sweet potato, apple, almond, garlic, mustard, turkey, mustard, pea, vanilla, sunflower).  I am not sure I buy into all that since the test is riddled with false positives. I have a feeling some of the foods were just new and her  immune system was stimulated.  Anyway there are a few foods that I know she does not tolerate (milk, soy, egg, oat, sweet potato) and the rest I am just unsure about. She is using a supplement called neocate (aka liquid gold) to help get some extra calories, protein, fat, that is hypoallergenic and she seem to tolerate that well (does not tolerate the taste).  She is drinking much better with little coughing and choking!!!! It seems the medication is working, now just to fine tune the diet.

Aside from the medical problems she seems to be happy and looks so much healthier than a month ago.  I think her weight is still around 22 pounds but her skin has a healthier glow, her hair looks better, and her cheeks have filled out some. I promise some pictures once I find my camera cord!!! Her gross motor skills are coming along. She could hardly walk the day we picked her up and now she can almost jump unassisted and can jump holding our hands.  She loves the trampoline, and being outside.  She will reluctantly climb the ladder to the play set but still needs some help.  Each day her balance is a little better and she moves more naturally (there is still an element of baby walking and spastic arm movements).  She is soaking in her busy brothers and sisters and imitating their every move as much as possible. I even caught her feeding The Frog Princess  a bottle and putting her on the toy potty.  We have honestly not worked too much with other stuff just because she has been so sick and our mornings have been spent at the doctor.  She is also soaking in English and is getting pretty good at following many directions.  Her vocabulary mostly consists of Bulgarian mumbo jumbo and Mama and No said about a million times each day!!!!! She loves music has so much fun watching The Fresh Beat Band and Yo Gaba Gaba! Bath time is very close to enjoyable with a baby freak out every once in while just to remind us this it is still new for her.  She will lay on belly in the bath and kick and is slowly starting to move around the tub exploring. 

Life is still hard, it is still stressful, and it is still chaotic. We have not "settled" into a routine but we are making progress.  Things are a little more manageable each day until a terrible day sets in and I want to scream!!!!! We are working towards a "normal".  I am limiting my blog posting since having 3 busy kids was hard enough but 4 kids and medical issues just leaves me time to cover the basics (sometimes the basics are not even covered).  I will try to update monthly on Sofie's progress. 

When I look into Sofie's eyes there is still a broken child, deprived of the things that make children grown both physically and mentally.  She is slowly healing both physically and mentally.  It will take time and progress is often followed by regression.  You can tell she wants to heal and has amazing resilience in the face of many hurdles!!! Adoption is no joke, it is hard, it is in trenches. In the beginning you are given unreciprocated love and lots of hard work, sweat, and tears.  Then the smile comes or the reaching to you for a hug or comfort and it reminds me it is worth it!!!!!!

Thanks to everyone for all the support!!!!! 

Happy 1 month GOTCHA DAY!!!!!

One month ago today sweet Sofie walked out of the iron gates of Vratsa Children's home and into the love of an amazing family.  We have had an insanely difficult month and 1 month later I feel we are finally moving forward instead of behind. 

I hope to do a more detailed update on Sofie along with some pictures (once I locate my camera cord in the piles of piles in my house).

Until then.....

 Happy One Month GOTCHA!!!!!!!!

Sunshine :)

After 2 very long weeks, I feel like Sofie is on the mend :).

We are slowly trying to eliminate most of the allergens from her diet and she is back to a sweet smiling girl!!! Combined with the powerful meds she is eating more than any toddler I have ever known.  She is drinking of FREE WILL which is amazing progress.  I dare even say she might be gaining a few ounces over the past few days!!!!! We did get one surprise from her GI doctor late Friday afternoon.  Her stool was positive for C diff.  She must have acquired it in the orphanage because no antibiotics were started at the time of culture. This is a VERY NASTY bacteria and I am now on hyper-vigilance for germ killing.  Luckily one of the antibiotics she was already one is used to treat it!!!  In essence her GI tract was/is a wreck. I am so thankful for an amazing GI doctor that by the grace of God saw her the day she was so sick when I felt like I had no where to turn (we all know you never get same day new appointments at a specialist office).  He acted so quickly and has been the catalyst for her recovery.  I am so thankful for my mom!!! She has cooked my family food nearly every night, watched kids, taken croupy kids to the doctor, shopped for me, and showered her love when I know she believed we were in over our heads. 

This week proves to be yet another week full of doctor visits. We have a scheduled well visit with the pediatrician that was AWALL when Sofie became so sick.  We have 2 more days of allergy testing. Finally we have a vision and hearing test to help get start with developmental services (we are trying to get things in place before she turns 3 in October). I am trying to get all these appointments over before the kids are out of school.  Nothing seems more unpleasant than carting 4 kids to the doctors in the summer heat

Hard to believe  nearly a month ago we were on our way to Bulgaria.....

Welcome to the club....

I am now an official member of a child with food allergies club!!!!

Good news, there are answers

Bad news, life is already complicated enough

Sofie endured the allergy testing like a champ!!!! She has an amazing smile and the staff was blown away at her calmness and smile.  Sadly, EOE has 2 allergic components (immediate and delayed). We did the immediate testing today and our sweet girl is immediately allergic to:
almonds
apples
garlic
mustard
pea
sweet potato
turkey
vanilla
sunflower

Turns out when she acted like we were feeding her was poison, it really was to her little body. No wonder why she fought me like hell with apple juice and vanilla flavored supplements!!!  It is possible she may be allergic to peanuts but she has never had them and her body could not generate an immune response.

Next week, we go back on Tuesday and we will retest all the negatives for the delayed response. She will wear a patch of the allergen on her back for 2 days and then we will get it recheck on Friday by the allergy doctor for any delayed reactions. It is possible the list may grow!!!!!! We will also have to meet with a nutritionist once we have completed the testing.  Thankfully, these allergies so far are not staples of a diet and should be easily avoided with the exception of vanilla.

By now, I am ready for a few beers!!!!!