We have a surgery date!

The first ENT we saw suggested Brigita return in 1 month, attempt the behavioral hearing test again, and assess Brigita for tubes then. I disagreed, explaining that she would not make enough progress in a month (after 7 1/2 years institutionalized) to complete the behavioral assessment and that Brigita needed every advantage she could get at this point in order to make more progress. After talking with the pediatrician, we both decided I would call for a consult now. Well, it went well! I love the new ENT. She works with the Down syndrome clinic here and also felt it was most beneficial to Brigita to go ahead and move. Unfortunately, we do not have know Brigita's heart history. We know she was thought to have been born with some issues that either healed or were never there when she was examined months after birth. Though all the doctors have agreed her heart sounds good, with the risks associated with down syndrome on the heart and with sedation, we all agreed to wait for the surgery after her cardiological assessment and ECHO, which is scheduled for 11/14/12. So, Brigita will have surgery on 11/20/12 to clean and drain her ears/ear drums, complete the sedated hearing test, and most likely put tubes in. I'm still struggling with the insurance company about getting an ophthamology appointment for Brigita. She is also scheduled to be seen in the GI clinic on 11/30/12. Lots of appointments.

On the home front, Brigita is doing well. She is doing self play more often. We are working on dressing and undressing and mostly she is cooperative and tries to help. We have been practicing with the toy where you stack the round donut shapes on the pole. She can now do this herself, though she doesn't notice the size differences/order. But initially I had to do everything with her hand. She can brush her teeth. She likes to "wash" dishes with me but gets very stressed out as to why she cannot get in the sink. She just doesn't understand this bathtub that the dishes go in. She loves bath time! That and swinging. She still loves to swing!

Please, put me in the swing!!

 

Here's some pics of her self play from this week so far

 

 

 

                                         Talking to her bear

 
Mom made me play in the wagon. I wanted to swing some more! I'll throw her sweater out!

 

 

Mom, just let me do it, okay?

 

 

 Self play with the swings

 

 

This camera case entertained her for about 30 minutes! She also hid

behind the curtain and under the high chair while playing with it.  



 Playing on the deck, because mom won't let me swing anymore! We were only out there for an hour!  

She will also sit on the bike, not just pull it. She doesn't know how to push yet but lets me push a little bit 

 This is what she does when                  Mom doesn't see me sneaking
she gets in trouble                                down to the swings, does she?


                                  Every chair gets tried and moved

 

We had our first post placement visit. With the guardianship, we had to have one within 30 days and then one completed every 3 months until she is adopted. The paperwork has been submitted from her country so my agency and I are getting the I800 completed to be sent. It will take 3-4 weeks to get that back after its submitted. Then we can get a court date and 2nd travel date for the actual adoption hearing!! I'm so excited! The remainder of the fees are due now (which I do have right now).

The final costs will be:

•  travel for the 2nd and 3rd/final trip (Brigita only comes on the 3rd/final trip)
• lodging/travel/food for both trips
• cost of travel and other fees from first trip
• passport, medical, visa for Brigita for 3rd trip

I think that's it, but I'm probably wrong. In getting the paperwork from her country, I found out she was transferred to a children's hospital due to medical issues (she had jaundice, was diagnosed with Ds, and had suspected heart issues). She stayed there for about 2 1/2 weeks and then was sent to the orphanage. I know have the name of the orphanage she stayed in for her first four years of life. I love being able to put the pieces of her life together as best as possible. There is so much that I will never know about her and she will never be able to tell. Knowing anything about her life makes me feel like I have more for her and for me. I'm hoping to find someone that visited her baby house during the time there in case they may have a picture of her. The earliest pictures I have of her is from 2009 (she would have been 4). I feel very blessed to have the pictures I  have though. I have pictures from 2009, numerous pictures from 2010 thanks to another family, a few from Dec. 2011, pictures from 2012, and then my pictures! We will be getting professional pictures done soon.

Reluctantly, I have to return to work next week! Its been a cloud hovering over me since I got home. I want more time with Brigita. I've missed 7 1/2 years of her life and don't want to miss anything more. She is so wonderful and I just love being with her. I've never been so happy!

 

 

Hearing assessment

We had Brigita's hearing test and consultation last week. It was pretty unsuccessful. They, of course, wanted to try a hearing test based on behavioral responses, despite the fact that I told them Brigita would not be able to participate/respond appropriately. Sure enough, they could not get a good read on her. Sometimes she appeared to hear the sounds but ignored them, sometimes it appeared she really didn't hear, and sometimes she looked in the direction of the noise but it was before the noise officially started. Mostly she just wanted to play with me. They did say her ear drums were too stiff and one did appear to be gray in color (the doctor couldn't see the other due to how small her ear canals were), indicating there may be fluid behind the ears. However, the doctor's recommendation was not to go ahead and do a sedated hearing test or put tubes in her ears. Instead, she wants Brigita to go back in a month, try the behavioral test again, and see another doctor instead of her. We rescheduled to meet with the new ENT next Wed. where I will strongly advocate for immediate treatment instead of postponing the inevitable. Three doctors have seen her and observed her to have issues indicating she needs tubes in her ears. She needs to be able to hear! In addition, I am working on getting assessments for her through the school system. However, they will not do the testing until she has had a vision and hearing test.

The only aspect of the appointment that was helpful was when we went to get batteries for her hearing aid (the doctor said we could start working on wearing them though the ENT office did not recommend this until she had a hearing test and was seeing an audiologist). Anyway, we did get to test Brigita's response to having the hearing aid in and on. She definitely does not hear completely out of her right ear. Though she did not want the hearing aid in her ear, she did like being able to hear. She got very excited! It was cute. Then she threw the hearing aid from her ear. Brigita was such a trooper during our long day! The doctor appointment was an hour and half away. And her appointment was during lunch. I tried to get her to eat earlier but she didn't want to. She snacked on applesauce and kix cereal while we were there but that was it. But she was very good! She's also gotten better about not going up to every person and wanting them to hold her. After the appointment, we got us some Cracker Barrel!

In tummy news, things have still been up and down. We did the enemas and started myralax last week. She initially was still having issues with bloating and not having bowel movements. Now she's had diarrhea several times per day until the  past 2 days. This was expected when first starting the myralax. I'm starting to suspect though that Brigita may be lactose intolerant (or at least sensitive). I'm taking her off of dairy products for now to see how it affects her. She has a GI appointment in November.

We had a follow up appointment with her pediatrician Friday. Her pediatrician felt that Brigita is doing really well. We have some more appointments to schedule. I'm working on getting all these scheduled.

We attended Step Up for Down syndrome awareness walk yesterday. It was fun. On the way there, our tire went flat. So, we arrived about an hour or more later than we had intended. Brigita did well here as well. Though she was not feeling well due to her tummy. I really enjoyed the walk. Brigita walked a descent distance at the walk, considering how tired she was. And she didn't hit, bite, or pinch any children.

 

 

 

Last week I had to say goodbye to my Mazda Tribute and get a new-to-me vehicle. The Tribute had several small issues that add up to cost a lot. But the biggest is that the seal on the transmission is failing and a majjor oil leak. The transimission is is a common issue in the Tributes. I had hoped to get it to last until after the adoption was complete and then was going to see about getting this fixed. But the seal has recently messed up more and it is leaking badly. So, I already know the minimum it will cost to fix just the transmission. Considering all the issues the Tribute has and the high mileage and that I would have to use my money to fix the Tribute instead of going towards Brigita's adoption, I felt trading it in was my best option. I got a Ford Escape and LOVE IT!

Here's some pics of Brigita playing with some of her cousins. There are still issues with her hitting, biting, and pushing but she is learning to play.

 

 

 

Some other pics that I particularly like

 

 

She does nap sometimes!

 

Bath time is her favorite time of the day

 

This is my grandpa :) So glad to have this picture

 

Getting ready for church. She thought she was super cute!

 

More proof that she does nap sometimes

 

 

I love this little girl so much!!

Every day I can hardly believe she is actually with me. It feels like I'm living a dream, one of the best dreams of my life! Not to say there aren't frustrating times (hitting, biting, pinching). She is such an amazing little girl. She is funny, sweet, smart, mischevious, beautiful...and many other things I've yet to discover.

 

Please consider adoption

(domestic or international, special needs or "typical")

 

Its worth it!

 

www.reecesrainbow.org



 



Two Week Update

Well, we have been home for 2 weeks now and Brigita is doing great! She is a wonderful little girl and coming alive wonderfully. I was worried about her transition since she found the apartment in country "home" and was very comfortable there. But she has entered our home like she's always been here. She loves to ride in the car, doesn't mind the car seat at all, and is learning to play some on her own. She likes baby dolls and will push her baby in her stroller, play the piano with her, and try to put her in the bathtub (anything that may lead to Brigita getting a bath, which she especially loves!). Brigita likes to play with piano with me and will place her hand on mine when I play. She is learning to sign "more" and "all done" and is doing pretty good at this. I was also excited to hear her make a noise when she signs "all done" that sounds similar to me saying it. I'm still not sure if she will learn to speak or not, but it doesn't matter to me. She loves the water and I cannot wait to be able to go swimming with her. She likes to splash her face under the water and for me to pour water over her head and body. When we were in country we were able to go to a beach but it was too cold to get in the water. She loved it though and would laugh just at the sight of it. I can't wait to take her to the beach. I love to swim and am very glad she loves the water so much.

We have started doctor's appointments. She is very healthy. Her poor colon was completely backed up and full of stool. So, I had to give her 3 enemas in a 24 hour period to clean her out and she is now on a stool softner. Its not completely fixed but we will follow up with her pediatrician and a gastro doc to monitor and help her find a better normal. She was such a champ going through the enemas! Of course, she has been going through those for years. Apparently, she does not have Celiac disease. Her blood work shows no issues or response to gluten at all and it turns out I was unknowningly giving her gluten (barley, thankfully she wasn't sensitive) so hopefully the blood work is accurate. I have started introducing wheat products and she has not shown any issues with these so far. She had her first Peanut Butter and Jelly sandwich yesterday. We will do another test next time she has blood drawn to monitor this further. Her thyroid levels are good. Her iron is okay for now and will likely increase with proper nutrition. She did have the antibodies for the vaccines that have already been given. We are now working on getting the appointments set up for hearing, vision, gastro, and assessments.

Brigita has been spending some time with family and loves spending time with her cousins. We still have a lot of work to do in regards to hitting, biting, hair pulling, and pinching but its getting better. We are teaching her the correct way to play. She doesn't hit herself much at all and rarely when she is going to sleep. She does still sleep with me and I am able to help her go to sleep without her having to do anything aside from sucking her thumb. She mostly goes to sleep well and will sleep for 10-11 hours. She doesn't really nap though she does still need to nap. We try every day (except if we're out and about) but she fights nap time like a champ. This past weekend we got a "new to us" swingset that is wonderful! It was a great price. She loves to swing. We have had a cold front come in and take away the 88-90 degree weather. I love fall and love that the gnats are going away! Perfect weather for swinging. Yesterday Aunt Liz and I took Brigita to Burger King where she had chicken nuggets for the first time and played in the playplace with Aunt Liz. She did really well and loved the slide. Then we went to the park to play some more and swing.

Here's some pictures from our adventures. I have some videos I will try to get posted soon as well.

 

Helping with the dishes...right??

 

But I don't want to go in yet!

 

She likes to close her eyes when she swings

 

Going to church, she thought she was cute! She kept putting her hands on her hips and playing with the skirt.

 

More swinging time!

 

Stealing mama's coffee

 

With Aunt Liz at Burger King

 

No eating the bark, Brigita (she's biting Liz's finger here)

 

She intentionally makes the swing twist and pulls her body up to make it jerk her.

 

Eating her PB&J and frustrated with mom b/c she keeps making me sign "more"

 

Don't let her fool you. This was only a 2-3 min nap as we pulled into the driveway coming back from Burger King, the park, and grocery shopping.

Long day!