Saturday, October 31, 2009

Danny's welcome home from boot camp

Marsha's brother Danny had a welcome home party. He just finished boot camp for the Marines. It was nice to see the family. Maria's little Uncle Tim enjoyed carrying her around and feeding her. She ate and ate and ate! Of course she was an absolute mess! Keep Danny in your prayers. He'll be headed to North Carolina on Monday. Then after that he will be sent wherever the Marines elect to send him. So far he says that he has enjoyed it.

The girls were so tired that Macella and Maria fell asleep in the car. I think Kirstie always has energy!

Friday, October 30, 2009

Friday in NYC

Today we packed up and headed into the city for our last two appointments this week. It was a beautiful day, so that was nice. We are certainly getting our exercise with all this walking.

Maria's 1st appointment was at 1 with the speech pathologist. She talked with us and got acquainted with Maria. Maria signed for a drink, even when the drink was not present, so that was an encouragement. She also copied the speech pathologist and knocked on the door that was in the book. She also got excited by some very fun handstamps. She wanted to remind us that even after the implants are turned on that it could take 6 months for Maria to speak.

Maria's 2nd appointment at 2:30 was with the audiologist again. She ran the tests with Maria's hearing aids on. Again Maria only responded to very loud sounds. She definitely responded though because she became very agitated and started biting herself. She also vocalized a lot, but then stopped when the loud noise came on. It was so loud that I jumped at one point and Maria didn't even seem to notice. Overall it left us at the same point as we were on Wednesday. She is definitely hearing very loud noises, but we are not sure how much she will hear with the implants. We'll find out more next Friday.

Also, we are looking at possible surgery on the day before Thanksgiving. That's not sounding like a lot of fun, as it would have been Maria's first Thanksgiving with lots of family. Also, the city will be a zoo due to the Thanksgiving day parade. It is also likely that we'll be there during the parade, but not be able to line up to see it. We're also not sure how much rest, etc. Maria needs after surgery. Please pray that if this is the day she is supposed to have surgery that all works out with presurgical testing in our area as well as with the massive amounts of traffic that will be in NJ and the city at this time. After surgery we will have to travel again 4weeks later, then 1 week later, then 3 weeks later, then 4 weeks later, then 6 weeks later, and then every 3 months. We'll be pros in the city by then!

After Maria's appointments we had to go to Gary's store in the city to pick up a laptop. Again we continued to walk to look for a cab. During the walk we ran into Dora on the street. Maria noticed her right away and started laughing. She was so excited. Then after her picture she kept trying to climb over me to get back to Dora. I put her down to see where she would go and she ran back to Dora and gave her a big hug. She also tried to take her head off:)

We caught a cab. I was able to see the Steuben store in NYC. It's very nice. Gary picked up the laptop. Then we went to an italien place for a very late lunch. We walked again to the bus station and then made it back to the hotel to pick up our car. We left NJ at 5:30. On the way home Maria started signing ice cream at the gas station when she saw the ice cream in the freezer. When we got back in the car she started screaming. It was so neat to once again see her sign on her own volition without us modeling for her first. We stopped at Krispy Kreme to take donuts home to Macella and Kirstie, so donut holes made Maria feel a lot better, even though she didn't get ice cream:)

We were able to see Macella and Kirstie at 10:30 when we got home. We missed them.

Thursday, October 29, 2009

Thursday in NYC

This morning Gary got up to work at his store in the city. It took him an hour to take the bus and walk in. Maria & I got breakfast at the hotel and then just hung out. I worked on bills and paperwork while Maria played and took a nap. It seemed slightly unfair that yesterday's weather was terrible, so we really didn't walk around the city and today's weather is beautiful and we're all stuck inside, but we're still enjoying the day. Around 1 Maria & I could no longer take the hotel room, so we took a walk to the only restaurant in walking distance--the Olive Garden. We had a fun time. She enjoyed her macaroni & cheese. On the walk back Maria noticed the fallen leaves. She loved them and it made it nearly impossible to walk back with her. She kept falling to the ground to pick up leaves. Then to entertain ourselves we looked in a mirror and tried to get a good picture. It seemed to take forever. Then Maria thought the Olive Garden bag was a much better toy than the toys we brought. Who knew?!

Gary made it back at 5:40pm:) I think we have another early night tonight. We have to be packed and leave our room in the morning even though tomorrow's appointments are in the afternoon. Tomorrow we meet with the audiologist again and with the speech pathologist.

Wednesday, October 28, 2009

Wednesday in NYC

Tuesday night the 27th we left for NJ again. It was a terrible drive in the rain, but we made it there safely and Maria slept the entire trip.

Today we ate breakfast in the hotel and got ready slowly. We knew how to get to NYU Medical Center and we were just planning to take the bus and then a cab when we reached the city. Unfortunately we didn't plan for the fact that rain makes cabs absolutely unobtainable if you're country folk and have no idea how to make a cab stop for you. The bus ride took longer because so many more people were riding this week and then in the city it was a sea of umbrellas. We watched the time continue to move on as we were half running half walking and half hailing a cab. Once we realized that we were closer and we weren't going to get a cab we had to walk/run slightly faster. We showed up 6 minutes late completely drenched and we were using an umbrella. I'm not really sure why I even did my hair:)

Maria did a little better with the audiologist today. She responded to vibrations at 95dB in the right ear and 110dB in the left. Next time we go they are going to try the test with her hearing aids in to see if she responds differently. After the audiologist we met with the education consultant. She is available to make sure her IEP is written correctly and to make sure she receives all the services she needs. She'll have to auditory training/auditory bombardment after her implants are turned on.

That gets us to the big prayer request---Maria's CT Scan showed that her cochleas have only 1 turn bilaterally. Both sides are supposed to have 2 1/2 turns. She has cochlear dysplasia. Technically this means her cochleas are not fully developed and it gives them less to work with when they do the implants. We were not sure if our trips to the city instead of a more local implant team were worth it, but now we know they were. We have one of the best surgeons. Her surgery will not end up being as routine as most of these surgeries are. She will have less frequencies available to her---please pray that miraculously she will have the speech frequencies. We will have more details after we talk with the surgeon next Friday.

After our 2 appointments we walked back in the rain once again. The walk back was more fun as we stopped for lunch. Lunch here costs more than we pay for a fancy dinner at home---and then Gary informed me that we actually ate cheap for the city!

We had an early night in with movies and Dominoes pizza!

Monday, October 26, 2009

Weekend in Lisle/Marathon/WP

On Thursday 10/22 Maria visited my new work place and crawled through the big caterpillar. She dropped off a picture of herself and a thank you note to her friends at Head Start since she didn't get a chance to say goodbye.

We had a wonderful weekend visiting family and friends. We spent the weekend at Marsha's parents---her poor mother never gets a break from us:)
Fri. 10/23--My Uncle Tim had a birthday party at her grandpa & grandma's house. It was nice to see everyone again. Maria & Kirstie enjoyed riding on my grandma's new hospital bed. how fun!

Sat. 10/24--Dale made wonderful french toast for all the girls and pancakes for Gary. We are so spoiled! We watched movies and a had a relaxing day. The girls haven't felt well, so it was good for them to rest. That evening we had an encouraging evening at our friend Lesa's Thai dinner.

Lesa is home on furlough from Thialand. She's working in an orphanage there. She had the dinner tables hosted by one of the kids from the orphange. We watched a video of the kids singing songs about God's love, peace, and grace. It was quite humbling and encouraging. It was nice to visit her, as well as some other dear friends from Whitney Point.

Sun. 10/25--We were able to visit our church in WP and once again visit with our old friends. Lesa presented her work in Thailand in more detail. She has such a great love for the children in the orphanage where she ministers. After church we had lunch with Gary's parents and then went to Gary's great niece's 1st birthday party. What a wonderful party theme---Curious George! Curious George is so totally awesome!

Enjoy some pictures from our busy, but encouraging weekend!

Tuesday, October 20, 2009

Kirstie's last day of soccer

Kirstie and her friend Sarah had their soccer party tonight. They didn't win a game this season, but they had a lot of fun. She and Sarah get along great together.

Monday, October 19, 2009

1st Appointment at NYU Cochlear Implant Center

Today Maria woke up around 8:00 after a very restless night of sleep. We tried to get her to eat breakfast at the hotel, but she was not interested. She was tired and had a tummy ache. We tried to wait it out at the hotel, but she just became more and more grumpy. We decided to leave the hotel and take the bus to the city a little early. She was definitely happy to be outside. She enjoyed the bus ride. It reminded us of our time in China.

We made it into the city around 11:45am and started walking. It was a beautiful day and we had until 2 for Maria's appointment. It took about 45 minutes to walk approximately 12 blocks. We carried Maria on and off. She enjoyed walking, but would suddenly fall down like a limp rag doll. We carried her while she just hung, which made a 20 pound little girl feel much much heavier. Then when she was ready she would get down and run down the sidewalk once again.

We made it to a Subway around 12:30. Again Maria had no desire to eat. She played and made a mess with her food instead. After Subway we checked in at the medical center and Maria played with the toys in the waiting room.

At 2:15pm we met with the audiologist and discussed the future appointments and what to expect. Then the audiologist took Maria for sound field hearing testing with hearing aids and without. We tried to train her to the test---in other words to look at a tv when she heard noise. We also used a bone conduction vibrator for her to feel the vibrations. She appeared to maybe respond to 2 sounds.

We discussed that a cochlear implant would not be as effective if she does not respond to more sounds. On the other hand it seems to be the best and only option we have at this point. She has 3 more audiological exams, so hopefully she'll respond better next week. The only thing that would completely stop the process is if her CT Scans show an abnormality of her auditory nerve or any other abnormality of the ear in which a cochlear implant will definitely not work.

This week we are looking at 3 cochlear implant companies in order to choose the manufacturer that we would like to use.

After her appointment we walked a little faster, maybe 35-40 minutes to the bus stop. We took the bus to our car and started our 5 hour drive home. The trip home was longer as the traffic out of Jersey was worse than when we drove in.

We made it home at 9:30pm and were able to say goodnight to Macella and Kirstie, so that was nice.

Next week we leave after work on Tuesday night, so we'll be getting into NJ around 10pm. Please pray for the 4 appointments we have next week.

Sunday, October 18, 2009

Maria loves the wind and learns to use a straw in NJ

We left this morning for New Jersey. We wanted to be sure that we made it before running into evening traffic. We've figured out how to get into the city tomorrow, so hopefully it will go as planned!

Maria traveled the four hours without incident. Once we arrived to our hotel, the wind was tremendous. She loved it! After check-in we decided to walk to a mall in the tremendous wind. I for one complained that I was freezing and was not enjoying the street crossings. All the while Maria took it all in as extreme fun. She giggled and smiled and tried to catch the wind in her face.

After walking for awhile we ended up at a TJ Maxx-----a very crowded and overheated TJ Maxx. We just walked around to warm up and headed back out into the wind. This was all a great adventure in Maria's eyes.

We walked to the only restaurant in sight, the Olive Garden and waited to be seated. We didn't bring Maria's sippy cup and I've been wanting to teach her to use a straw anyway, so why not start at the Olive Garden?! Maria thought it was quite hilarious to get milk dropped in her mouth. She didn't quite get the concept of sucking from the straw, so I put my finger on the top to capture the milk inside. Apparently Gary thought my teaching was going much too slow, so he put the straw in her mouth and waited. She was surprised at her first sip and then was so excited. She kept signing drink and didn't eat anything, but she loved drinking from a straw!

We're thankful that we made it safely and the weather was beautiful for the entire trip. We're thankful that Macella and Kirstie had a good time with their friends and grandma today. Now we're attempting to get Maria to sleep---we shall see how that goes!

Please pray that we get to our appointment without incident tomorrow and that we ask the right questions for Maria. We are so hoping that she will be a candidate for a cochlear implant.

Enjoy some pictures of our day-----

Friday, October 16, 2009

Maria's 1st CT Scan

They say a picture says 1000 words and since I have no picture of today's CT Scan you're going to get the 1000 words! The camera was ready for pictures the last time we checked, but when I went to use it the batteries were dead. Now for the story:

Maria needed a CT Scan of her head, so the pediatrician quickly made us an appointment for this afternoon at 3pm. I had to go by myself because Gary is already taking off so much time for Maria. I was a little nervous because I knew she had to be completely still and obviously I would not be able to explain that to her.

We walked into the hospital went to reception and they immediately sent us to x-ray. The room was full of people who were waiting. We were there less than 2 minutes and Maria's name was called. We went to a back room to fill out paperwork and ran into our friend Roy. He's a radiology student at the hospital. Not 5 minutes later we were taken to the CT room. Maria was happy and making noise the whole time.

The technician asked my name and explained that Maria would have to be tied down and that I would have to hold her head by the chin. She needed to be as still as possible. I thought "finally, a good reason to have all those sensory issues. She loves to be squeezed!" I put her on the table and they started wrapping her up with velcro and blankets. After we had her arms tied down she looked up at the technician and gave him a huge grin. She was still holding her head up a little and seemed a little bit nervous about laying it down, but I gently pushed her head down and she appeared excited. They added extra padding around her ears to hold her head in place. She was all smiles!! Then they gave me an x-ray vest and said that the 1st few scans it would be ok if she moved a little, but the last ones I would have to make sure that her head did not move. As soon as the table moved into the "tunnel" Maria giggled. She seemed so amazed. The table moved in and out and she watched the lights. When it came time for me to hold her chin I wasn't sure if all this "fun" she was having would disappear, but once again she amazed me with a giggle. She was finished within minutes and we untied her from the table.

I put Maria's coat on and was trying to put mine on, but Maria kept trying to get back to the table. I think she thought she was at an amusement park! The technician picked her up, so I could put my coat on. Maria just loved it.

When we got home she kept babbling and babbling. She was so excited to "tell" grandma all about her CT Scan adventure! I say getting a CT Scan machine for the house might be a good investment if it brings this much joy to our sweet little Maria:)

I started out nervous and prayed that I would be able to handle carrying my purse, the diaper bag, and our winter coats (we have snow). I was concerned about Maria not being cooperative and just prayed that we would make it through. The Lord blessed me and Maria with the best possible CT Scan ever. He gave me more than I ever asked or imagined. Isn't that just like our great big God! What a great beginning to Maria's cochlear implant appointments that start next week.

Sunday, October 11, 2009

Upcoming appointments for Maria

10/12--We are taking a swab test of Maria's mouth for more genetic testing. At this point they have not found anything, but this test may. The results take up to 2-3 months and the tests are $5000. Thank goodness for health insurance, although we are not anticipating full coverage.

10/19 at 2pm--Our 1st visit to NYC to the cochlear implant team. We'll be spending the night Sunday the 18th, so that we can get to the appointment on time.

10/20--We have a CPSE meeting at 9am at the Horseheads school to request the 1:1 aid.

10/27--We leave for NYC again for Maria's appointments on 10/28 at 1pm and 2pm. She also has two appointments on 10/30 at 1pm and 2:30pm.

11/5--We leave again for NYC for Maria's appointments on 11/6 at 11am and 12:45pm.

Again we are thankful for insurance, but believe these appointments will at most be 80% covered. Please pray that we will be wise in paying for Maria's medical bills. We are staying in NJ instead of NYC in order to save money on hotel bills, so that should help. Also please pray that these appointments will reveal whether or not Maria is a candidate for a cochlear implant.

We have some videos on cochlear implants, one for children and one for adults if you are interested in understanding the process. We've already had some family and friends borrow and watch them. Even though they aren't exciting, they help with understanding where we are as a family and what Maria is experiencing and will experience.

Thank you so much to those of you who have requested to know where we are with Maria's hearing and education. We appreciate your interest in our family. Macella & Kirstie are doing a great job as big sisters. We are so very proud of them.

The Lord has blessed us with wonderful family and friends. He is also providing for us in many ways. Thankfully Marsha was able to begin work and has been given permission to take off for all of Maria's appointments. Thankfully there is a safe place for Maria to go during the day and receive all of her therapies. Thankfully the girls are settling in to school and doing well. Thankfully Marsha's mom was able to help us out once again and stay with Maria for now. Thankfully we have a great support system in Christ and in you, our family and friends. We appreciate your prayers and love.

Friday, October 9, 2009

Marsha's mom saves the day again:)

Monday 10/5, We heard back from the school & county and they will give Maria a 1:1 aid if she attends the 2 year old preschool/daycare. It is the only place in the area that has a school curriculum, so she can qualify for the aid. We were not aware that we would be sending Maria to college already, but it's the option that seems the best:) Her school meeting is not until the end of October and since Maria's NYC appointments are at the end of Oct. she will start the preschool/daycare the 1st Monday in November. Ana is babysitting today and tomorrow. Thanks to Ana for working so hard and showing Maria such love. Marsha's mom will be coming out Tuesday night until the end of October. She will go home on the weekends, but spend the week with us. God certainly gave me the most wonderful mom!

Wednesday 10/7, Maria enjoyed speech therapy with grandma:) They had such a great time.

Thursday 10/8, Maria had even more therapy. Grandma is enjoying helping Maria show off her skills.

Friday 10/9, Our friends the Proper's are so sweet that they took all three girls so that we could go out for our 16th anniversary. Wow--where did the time go?! We realized that this is only the 2nd time since bringing Maria home that we've had a night out alone. Thank you Proper's for being so kind:)

Saturday, October 3, 2009

Apple farm in Rochester

Today we went to Rochester to the Apple Farm with our adoption group. It was so exciting to see 3 of our newest additions. It is so neat to see how families are put together and to see such great love in everyone's eyes.

Maria took her 1st hayride and enjoyed picking apples with her sisters.

Friday, October 2, 2009

Marsha's new job and Maria's schooling

Wednesday, 9/23--Today I started my job at Pediatric PT & OT Services in Horseheads. Maria was not able to go to Head Start today because there was not a substitute teacher to be her 1:1 aid. Thankfully our friend Ana has decided to watch Maria on the days she cannot go to school. In addition, this Monday there is a meeting for Maria. If they do not give her an aid, she will not be able to return to Head Start. Ana has agreed to watch Maria and have therapies at her house. We are so grateful for her help.

Friday, 9/25--Jeremiah, Ana, & the kids spent the night at our house. It was an overdue time of fun. The next day Ana and Marsha attended a CPR and First aid course. It was a lot of fun!

Monday, 9/28 at 8am we met at the school with the therapists, the Head Start staff, the county staff, and the school staff. We knew it would be a long meeting. We were told that Head Start found Maria to be too big of a safety risk even with an aid. The school district and county did not believe that Head Start was an appropriate placement, so they would not give an aid anyway. We finally decided that she would have to get less services at Ana's house. Most wanted her in a preschool setting, but nothing really exists in our area. We have one 2 year old preschool/daycare, but it is very expensive. After the meeting, we explained everything to Ana and she agreed to watch Maria for us.

At 3pm, a social worker from America World met with us to write Maria's 6-month report for China. It was kind of funny because we had to explain Maria's typical day and we have yet to have had a typical day since beginning September. We guessed what her schedule would be at Ana's and apparently to that was good enough.

Thursday, 10/1, Ana let us know that she would no longer be babysitting. She is going to substitute teach at the school. She felt really bad about it, but it is what is best for her family right now, so we certainly understand that. This meant that we had to double check on all the phone calls we already made to see if there was some place else for Maria to go. The problem with a daycare with multiple kids is that a 1:1 aid would not be given to her there. Her safety would certainly be an issue with a bunch of kids and only a few adults. With her not hearing and putting everything in her mouth, we really didn't feel as if this was a safe solution. We also checked into having her babysat at a home with only a few kids, but then we were concerned about her safety as well. A babysitter would not have all the regulations of a daycare. Also, since we did not personally know any of these people and Maria does not have a "voice" she is the perfect target for child abuse. All of these thoughts brought us back to the fact that our only real choice is the 2-year-old preschool in Elmira that is quite expensive. I called the preschool and found out that they would not accept her without a 1:1 aid. After more phone calls, we have to wait the weekend to find out if she will get an aid.

We would ask for prayers that Maria will end up where the Lord deems best.