Sunday, March 28, 2010

Macella receives an Ernie Davis Essay award at Elmira College

Today was one busy day for all of us. Gary took the girls to church while I traveled to Syracuse to be with my grandma who was in the ER. After church Gary fed the girls and then left for the college for Macella's ceremony.

Macella's essay was required to be titled "Express How Someone Special Has Influenced Your Life" and it was to be 250 words or less. She decided to write about Maria. Many schools were involved in the ceremony. Macella & her best friend won for their middle school, so that was exciting for both of them.

After the ceremony Macella went to a teen church party at the Proper's and Gary took their two younger daughters home to play with Kirstie and Maria. They all had a great time.

I spent the afternoon and early evening in Syracuse. Grandma became stable and is being treated for pneumonia. Tim and I caravanned to Cortland to visit my grandpa at Cortland hospital. He is dealing with an infection that the doctors cannot seem to figure out.

After visiting, I took the trek back home. Please pray for my grandparents. It's hard for them to be in two separate hospitals.

Now it's time to get ready for another busy week!

Saturday, March 27, 2010

Our last report for China!!!!!

It is so hard to believe that we were traveling in China at this time last year. Wow has it been a busy year! Today we had our last visit from the social worker from America World Adoption. China requires a 6-month and a 12-month post placement report on adoptions. The social worker was out this morning to ask updated questions about Maria. Once she types up all the information we'll sign the report and it will be translated and then sent to China. What an exciting year. Maria is a joy!

Thursday, March 25, 2010

Barium & Earmold fun

This morning Gary & I took Maria to an upper GI appointment at the hospital. I should have known that would mean drinking barium. It took them so long to call us in that thankfully Maria wanted the cup. She went straight for the doctor because he had a very shiny watch on. Maria went through three straws and drank some from the cup. Then she was just done. She was laid down for a 1st scan and she screamed through it. Then Gary went to the car to get her sippy cup, so we could hopefully get her to drink some more barium. Thankfully she thought she wasn't allowed to have her cup, so then she wanted to drink it. We kept hiding it, so she could look for it and then drink it. We were there for 2 1/2 hours, but Maria was a trooper. She had barium everywhere, but she made it through the test. The doctor said that Maria just has the normal reflux that all young kids have. It appears that Maria is clear, so that's good!

Then Gary took Maria back to the babysitter's and we went back to work some more at our jobs. Then at 3:30pm we took Maria to the audiologist for an earmold fitting. Maria was not very compliant at all! It took Gary, myself, and the audiologist to hold her down while she was screaming. For a small little thing she certainly can be strong. In the end we had two little things that looked like the inside of ears! We go back again in 2 weeks for the official ones that she'll always have to wear. Hopefully that will be less of a screaming issue!

Sunday, March 21, 2010

Therapists, Heart specialist, Upper GI

On March 10 all of Maria's therapists and her babysitter met to discuss Maria's progress. At this meeting I told them of Maria's diagnosis. They all continue to be very supportive. I think they were relieved to hear why Maria's progress has been so slow and were also glad that they were all on the right track with her.

I was finally able to call Maria's pediatrician to tell her that Maria has CdLS. She immediately went to work in making sure that we had referrals wherever we need. On Friday March 19 we took Maria to a cardiac specialist for a cardiogram. We were able to see all four chambers of Maria's heart from different positions. I wish we had brought the camera. The nurse wanted to show Maria the "gooey" stuff for the ultrasound, so of course Maria immediately put it in her mouth. Then she just started rubbing it all over her chest and stomach. Maria was very wiggly, but every time we reminded her of the "gooey" stuff she was content to rub her hands in it! It appears that Maria's heart is fine. We are so thankful that we can cross that off our list of possible issues that she might have. Not only that, but we did not even have a co-pay for this appointment. We continue to praise the Lord for his provision in our lives!

This Thurs. March 25 Maria has an Upper GI appointment at our local hospital. I'm not sure what that entails, but hopefully she will be compliant during it. Depending on the results of that test we will know if we have further testing locally, in Rochester, or if we're finished testing. Then that afternoon we head to our local audiologist to see if she can make a different kind of ear mold to hold Maria's devices into her ear a little better. We are forever putting them back on her head. She does not like to hear! She thinks she's going to win this one, but we are going to find a way to keep those things on her head! It's our lesson in patience I think. Good thing she's a cutie!

Then next week we head back to NYC for an update on her cochlear implant programming. We're just making a long day trip out of it. She has one appointment at 2pm with the audiologist and one at 4pm with the surgeon for follow-up. We'll keep you posted!

Thanks again for all of your support. We're so appreciative of your prayers, e-mails, and calls.

Saturday, March 6, 2010

Maria has another diagnosis

As I sit here trying to figure out what to write, I'm not sure where to begin. We know the Lord chose Maria to be a part of our family. She has already brought us so much joy and grown our family closer together. Our extended families and friends have been so supportive and grew to love Maria in an instant. We have been blessed with a fabulous babysitter, Sharri. Her love for the Lord and for Maria is so evident. We have also been blessed with wonderful therapists who work so hard to see Maria succeed.

It has been quite evident to us that Maria's needs are far more than her deafness and her adjustment to cochlear implants. She was 18 pounds at age 3, now 11 months later she is only 22 pounds. She is 4 pounds heavier and she would eat all day if we would let her. In addition she has made progress in her language, physical, and cognition abilities, but her progress has been slow. Many of you know that we had genetic testing done in November, but we did not share the exact reason for the genetic testing. Maria's eye doctor had suspicians about two different syndromes. He suggested that we see a geneticist.

We heard from the geneticist on Friday. She let us know that Maria has Cornelia de Lange syndrome. It appears that Maria has a mild form of it, as her facial and other physical features are not as pronounced as many of the children. Also, she has 2 variations on the gene that is present in people with Cornelia de Lange syndrome, but her variations have not been specifically reported. We are being referred to a medical research team in Philadelphia. It is not known whether they will be able to give us any additional information, but information about Maria may help the diagnosis of other children in the future.

This diagnosis does not change our current treatment plans of speech, OT, PT, special education services. It does mean that she will continue to make improvements in these areas, but we can expect them to be slow. Children with CdLS have communication problems and often do not talk or talk very little. This, along with the fact that those with cochlear implants take some time to learn about sound will also slow Maria's speech progress down. What impacts us the most is that we will be taking Maria to even more medical specialists. Children with CdLS often have GI problems, which causes children to sometimes be self-injurous. We attributed all of Maria's scratching, biting, and pinching to her implants, but these behaviors are present in children without hearing difficulties. For more information on CdLS you can visit the following website, but please remember that Maria most likely has a mild form of it. The webiste is:

We appreciate your prayers for Maria. Please pray that she will stop hurting herself. Also please pray that if she does have any physical issues wrong (i.e. GI issues, etc.) that the doctors will find them as soon as possible. We often feel that she is in pain, but have no idea if she is.

We are so blessed to have Maria in our lives. She is a joy and a gift from the Lord. God knew she would be in our lives. He knew that the 2 major issues she would have in her life (deafness & CdLS) would be communication/language issues and that I would be a speech langauage pathologist. I'm really glad I have the help of more experienced SLPs, but I'm so thankful that the Lord sent me to college, so that I would really understand what she would need. He is good and He will continue to care for her in ways that will amaze us.

Thank you all for your love and concern for our family. We praise the Lord for you.

Monday, March 1, 2010

$140,000 in Medical Bills

Did you see the title to today's blog?! Maria's medical expenses over the past year have totalled approximately $140,000. Do you know how big our God is? He knew that we needed a miracle to pay such bills. Out of that $140,000 we have only had to pay approximately $5,000 (that includes transporation & stay in NYC). We've put that $5,000 on a credit card; the credit card that continued to hold the approximate $8,000 we put on it to finish paying for our trip to China. We just finished our taxes and our refund will be enough to pay off the entire credit card. We have so much to praise the Lord for. We were praying that we would only have to pay 10% of her bills and we only had to pay about 3%. We often share our prayer requests and forget to share our praises. We wanted to share this wonderful news with you. Thank you for your prayers. We praise the Lord for you and for His wonderful provision in our lives.