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!

Happy to be Home!

Sorry for the lack of posting. My internet service in country was not very good. Then my computer wouldn't connect to the internet at all. So, I just let things slide. I have been home since Tuesday, 09/25/12. So, what has happened since the last post...Oh I know! Brigita is home with me!!

Our last night in Country Brigita's country allows guardianship of the child after the first visit. This had not seemed like a good option for me and Brigita initially for various reasons. However, after having her with me and seeing her grow and change so much, I could not send her back to her institution and have her regress. In addition, I would have been a heartbroken mama coming home by myself. The delay in the court case ended up being the biggest blessing! A reminder that if we trust in God, his timing will reveal his might and wisdom. I was able to use the extra time to get the necessary documents and arrangements in place to bring Brigita home. Brigita's institution is 4 hours away from where we were staying. The attorney showed up at my door at lunch time for us to go...unannounced. We had to go there to get her passport b/c the institution had her birth certificate. We also needed her medical records for her to have a medical as part of the Visa. So I quickly packed Brigita's diaper bag and a lunch for her. Three hours later we arrived at an adult social care center. The entire ride was in the middle of NOWHERE! The attorney got out at the care center and went inside. An hour later he was ready to leave. I have no idea why we were there or anything. So, when we got in the car, that's when I found out that we no longer had time to do Brigita's passport and would have to spend the night at the institution. I was not prepared for this at all. I was worried about how Brigita would act mostly. I didn't know if she would get to stay with me or if they would want her with her group. Plus, I had nothing for her or myself for spending the night anywhere. And had limited diapers since I hadn't even known we were going anywhere. Brigita did not fare well initially. She started hitting herself, throwing food, and refusing to eat. When we would walk by her group door, she would start pulling and trying to run off to keep from going inside there. She did eventually calm down and we were even able to visit with some of the caretakers in her group as well as 2 kids (the others were in school at the institution). While we were there, if I even looked like I was getting ready to leave a room, Brigita was right there holding on to my hand. I knew Brigita was cared for and cared about at her institution. But it was still glad to see people coming to see her and telling her how sweet she was. They were also impressed with how calm and well she was doing. The institution ended up sending a letter to the orphan court saying they had seen her with me and that I was a good mama for her and it would be detrimental for her to be returned to the institution and instead should be allowed to come home with me. We had another visit with the two workers for orphan court on 09/19/12. These ladies had not seen Brigita since 09/05/12 (2 workers from another court made 2 visits). These ladies were very impressed with Brigita's progress as well. However, we have all been very concerned about her tummy issues. Her poor little tummy gets so big! We took her to the Children's Hospital one day and she had an enema to give her some relief. When we had court on 09/21/12, I was really nervous that I would not get approved to be bring Brigita home with the documents I had b/c they were not originals or apostilled. However, that didn't seem to matter. My application to adopt was approved and my application to bring her home was approved! So, we set off to get her medical and visa. We had to wait to get her Visa back on Monday, which is why we couldn't leave until 09/25. Brigita did great on the planes until the very last one. She had been up for 18 hours and I had rushed her down some ramps and then up the ramp to one of the small airplanes. She doesn't really rush (at all) and has issues with perception and balance so the ramp was especially difficult. But we had to hurry! By the time we were seated, she was stressed and rocked and banged her head the whole time. But once we got off the plane, she was fine again. She has done really well with her transition home. She is an amazing little girl! I feel so overjoyed and blessed to have her in my life. I also feel like she has been with me for so long. I love her so much!! Brigita has not been adopted yet. This is only temporary guardianship while the adoption is pending. It will be about 2-4 months before I get to go back for the 2nd trip, which is the actual adoption court hearing. After that trip, Brigita and I both go back for the last trip (there is a 20 day appeal wait so its 30 days after trip 2) to get the adoption decree, new birth certificate, new passport with her new name, and new visa! Please, if you are able to continue donating, fundraising, and/or sharing our story, we would greatly appreciate any help. We still need about $10,000 and bringing her home early did add some extra expenses. Of course, she is worth every dime! So, here are a few pictures of my beautiful girl!

Settling into the car seat at the airport

Hanging out with Dollie after a morning bath

This swing will do for now. I found her a nice swing for a really good price that we'll get next Saturday

Snack time!

Froggie friend from Aunt Paige

Have I said how much I love her??

Leaving her institution:

Various days and photos (that I find especially cute!)

9/5/12 Orphan court went okay yesterday. I was given guardianship of Brigita however, they want us to keep her until 09/21/11. This is 17 days of bonding time, which is ridiculous. 10-14 days is all they ever do. And it means at least $600 more for airfare changes as well as money towards the lodging and food. Hopefully this will be changed. The judges (I guess that’s what they are) had many questions about how I would handle Brigita’s hitting. To me, its not a big deal. She is not aggressive. She thinks its funny, she is doing it for attention, and its just like kids going to daycare learning negative behaviors except she is around it at all times, no one has the time to address the issues, and they don’t think she can really learn anyway. Yesterday Liz and I went into Riga to get Brigita some clothes. We managed to get on the right number train and on the right track home, but it was retiring for the night and another had taken over. So we drove about a quarter of a mile and then the train stopped, the lights dimmed, and then went out. We had to bust out of the boxcar (I know, dramatic, we simply opened the door), jumped down on the tracks and walk back the quarter of a mile. It was funny. We made sure we were not the first or only ones to get on the next train. Poor Brigita had to drive for 4 hours. She was a trooper though. I don’t think we could have asked her to handle it better. She of course got really restless the last 2 hours. It was past both her dinner time and bed time and she had been sitting in a car for basically 2 hours with total strangers. She is usually in bed at 8pm but it was after 10pm last night. She slept well though. She loves a bath!! She lays all in it, completely submerged and likes for me to splash water on whatever is not covered by the water. You have to drain the water out and still pick her up to get her out. She is an amazing little girl! It makes me so sad to see the behaviors and oddities she has developed in order to stimulate and soothe herself. She rocks often and likes to dangle things in front of her face. She sucks on her clothes and stuffed animals. She tries to suck on her thumb but her tongue is so big she mostly ends up chewing on her thumb. Tonight she was tired and not feeling well and proceeded to hit herself quite hard on both sides of her face and head for over 2 hours. However, she was also coming to me to “fix” it for her and help soothe her. She is funny and her personality is coming out more and more. And its only been 24 hours. I am going to miss her so much! I pray that the process is completed by Christmas but there is a definite possibility that it could be February. This makes me so sad on so many levels. I love her so much and just want her to be home where she can get some medical care and attention. Her little stomach is so distended and she has gas (and let me tell you they stink!) all the time. Her tonsils and ears also need checking out. I don’t think her tonsils are infected necessarily but they are definitely obvious. Her teeth could be worse but she has several cavities and damage from excessive grinding. Brigita likes to snuggle and loves to swing. She likes the stroller and has done well walking hand in hand when I’ve allowed it. She is strong willed, stubborn, and independent. Most of her smiles and laughs are more mischevious. But I have gotten to see some sweet smiles too. She thinks she’s hilarious by the way! I think she is too! Though she is bigger than I expected, she is not as big as she seemed initially. I was expecting a small, petite 3T and what I got was a very big 4/5. 09/06/12 Brigita is fantastic! I love this little girl so much. She follows me around, wants to snuggle, and loves to play. She is learning time out today. We have realized that she is much more aware of what she is doing than given credit for. She has spent several times in time out today (with me standing there of course). She will even check to see if I am looking and if not will try to get up. But when I turn around, she’ll plop right back down. She even knows to give hugs afterwards. Again, she is fantastic! She has beautiful skin like porcelain and big brown eyes. I can’t imagine being with her another week or so and then not seeing her again for months. When she lays beside me at night, she smiles and smiles like she’s so happy to be there and for me to be there with her. She follows me around the apartment and if I look like I’m going out, she comes to grab my hand. She is eating and drinking okay and using the potty, though she doesn’t tell you she needs to go or anything. She would bathe every time the door is open if I let her. Well, I’m cold and been away from her for a little while. I have to come outside to use the internet so I’m not able to get on often without being away from Darya and leaving everyrthing to Liz. I’m going to try my hand at adding a video of Brigita doing one of her stemming behaviors. She had an "episode" yesterday evening of hitting herself for about 2 hours. She clearly didn't feel good and just wanted to be held and snuggled but couldn't stop hitting herself. I gave her some tylenol and just held her. After she ate and got a bath it completely subsided. It was pitiful. It was like having a child whining when they don't feel good but instead she was hitting. But she wanted mama.

We're Here and have met Brigita!!

Sorry its been so long but I haven’t really had access to internet and we have been on the go. Liz (my good friend) arrived here on August 30. We stopped at the store, got settled into the apartment, met up with Valerie and Tyler Kirkland for a little bit, then showered and basically vegged out. We were in bed by 8:30pm. We were so exhausted. The flights were not bad but were long!! The longest one from Newark, NJ to Frankfurt, Germany had some very inconsiderate people in front of us that felt they should recline their chairs all the way back the entire. Poor Liz’s knees were crushed against the back of the chair. Being short this was not a problem for me. But the TV screen was directly in front of our eyes. I have never watched TV so close. The flight attendants had to pull their chairs up for them so we could eat. As soon as they were eating, they would recline again, whether we were finished or not. It was not fun! Brigita’s country is beautiful! We have mostly just seen things while driving. We are staying in a beautiful resort town outside the capital and her orphanage is about 4 hours away. We left the next morning to go see Brigita. Oddly I did not feel very nervous about meeting her. It mostly just felt surreal still. I have seen the outside of her institution and the people there so many times on videos I had found. But seeing it in person still felt weird. But what was most surprising was the child they brought to me. I was waiting for a little, listless girl. What came in was nothing little and nothing listless. Brigita has grown so much. I brought 3T clothing but am guessing she is a size 5/6 maybe. She is about 3 ½ feet tall! Her hair now reaches her shoulders. She is absolutely beautiful. She was scared when she walked in but quickly reached over to climb in my lap, then promptly boxed me in both ears LOL!!! She loves to do this and thinks it’s funny. She is quite the little imp. She also thinks biting is funny. Luckily she doesn’t do that as often. She will hit anyone that gets within reach of her but mostly on the sides of the face. She also does this to herself. She tries to run off and also thinks this is funny. She is very active and tries to climb everything. We were told she was not “very into what is happening around her.” Wrong!! She is completely aware of what is going on she just doesn’t always care. She does have some attention issues. We were not allowed to take her from the orphanage yet because we have not had orphan court. But we were invited to stay at the orphanage as long as we wanted. The only problem is they wanted our attorney/facilitator person to stay as well b/c of the communication issues. So, we stayed in an apartment at the orphanage and they kindly fed us dinner and breakfast too. It was very well prepared and good for orphanage food. They fixed everything up nicely. We got to meet some of the other children but there was no one to translate for us so the kids would just walk off. But the kids knew Brigita’s name (its actually a nickname of her real name). I met Veronika from RR. She seems really sweet and takes care of the younger children. Also, Brigita’s hearing does not seem as bad as I had expected. She definitely has issues with hearing but there were things I wouldn’t have expected her to hear that she did I’m getting cold b/c we are having to sit outside to get internet access. We are going to go buy new clothes for Brigita tomorrow and do some adult and touristy stuff with the Kirklands since we can’t see or get the kids until Tuesday. We all go to court on Tuesday and hopefully get our kids that day!! We can’t wait to get the kids together and spend time together. And I’m excited to have Valerie and Tyler’s expertise and advise! So, here’s the pictures! Brigita first walking into the room! See how big and scared she is...

Climbing into my lap for the first time!

Boxing me in the ears (the first of many; you should have seen how red my cheeks and ears were afterwards)

But still likes to snuggle

My favorite picture! She's actually tired. This was right before going back to her group for bed.

She loves to have you hum, sing, or make noises into her ears. She makes lots of noises, clicks, sounds, etc.

She loves to swing!

The time has finally come!

Yay! Its finally time to fly off. I've never been out of the contdo y before & am very excited to visit such a beautiful country. Its still so hard.to believe I will be holding Brigita in less than 48 hours. Another family.left yesterday to visit the 2 boys they are adopting. We are staying in the same building. I'm excited to meet them & their boys. Please remember us all in prayers! Now I'm off to get ready!