Tuesday, May 24, 2011
Monday, May 23, 2011
May 20th, 2011
Amelia is walking! We’ve been working on this for so long that I had to share it with all of you who have been praying for her so faithfully. She is still very wobbly and it’s hard to watch her make her way around furniture and other objects, but she keeps at it and has learned to fall and get back up by herself. She’s already cut her lip and got a couple of bruises to show for her efforts, but we have to let her keep going. Whew!
There is no major news on the brain stem implant situation, but the House Ear Clinic in LA is preparing their case for the FDA. The doctors have now decided that they stand a better chance for FDA approval of the brain stem implant if they can prove that they have already ruled out all other treatments such as the cochlear implant. This means that they want to perform a cochlear implant on Amelia, so she can then be a part of the clinical trials. Since we have already been told that a cochlear implant won’t help her, we are very reluctant to have her go through this additional surgery.
After many weeks of waiting for a response Kristina finally heard back from the clinic in Italy and they have requested Amelia’s information for their review. She’s busy getting all the information together for them. So as you can see, we are still in a holding pattern and continue to need your prayers in order to make the right decision for Amelia.
She is, of course, quite unaware of all this “angst” and enjoys just being an almost 2 year old. She plays with gusto and loves to learn new things. We have to work hard to keep her constantly challenged and she amazes us with how fast she learns. Just yesterday I got out Siena’s Memory game and Amelia took to it immediately by turning over cards to find the matching ones. She expects applause or a head rub after every correct choice! She gets into plenty of trouble too, and lets us know exactly what she wants. She uses either her growing sign language skills or if we are too dense to understand what she is trying to say, she pushes and pulls us to where she wants us. She has a very healthy appetite and she now knows the signs for dessert and chocolate and uses them after every meal, even breakfast!
Amelia is walking! We’ve been working on this for so long that I had to share it with all of you who have been praying for her so faithfully. She is still very wobbly and it’s hard to watch her make her way around furniture and other objects, but she keeps at it and has learned to fall and get back up by herself. She’s already cut her lip and got a couple of bruises to show for her efforts, but we have to let her keep going. Whew!
There is no major news on the brain stem implant situation, but the House Ear Clinic in LA is preparing their case for the FDA. The doctors have now decided that they stand a better chance for FDA approval of the brain stem implant if they can prove that they have already ruled out all other treatments such as the cochlear implant. This means that they want to perform a cochlear implant on Amelia, so she can then be a part of the clinical trials. Since we have already been told that a cochlear implant won’t help her, we are very reluctant to have her go through this additional surgery.
After many weeks of waiting for a response Kristina finally heard back from the clinic in Italy and they have requested Amelia’s information for their review. She’s busy getting all the information together for them. So as you can see, we are still in a holding pattern and continue to need your prayers in order to make the right decision for Amelia.
She is, of course, quite unaware of all this “angst” and enjoys just being an almost 2 year old. She plays with gusto and loves to learn new things. We have to work hard to keep her constantly challenged and she amazes us with how fast she learns. Just yesterday I got out Siena’s Memory game and Amelia took to it immediately by turning over cards to find the matching ones. She expects applause or a head rub after every correct choice! She gets into plenty of trouble too, and lets us know exactly what she wants. She uses either her growing sign language skills or if we are too dense to understand what she is trying to say, she pushes and pulls us to where she wants us. She has a very healthy appetite and she now knows the signs for dessert and chocolate and uses them after every meal, even breakfast!
Monday, March 21, 2011
March 17th, 2011
The time just seems to fly by and I just realized how long it has been since I updated all of you on Amelia’s progress. She is now 20 months old and weighs about 25 lbs. She has lots of energy and her sign language is growing every day. At last count she can do about 25 signs and recognizes more than 65. She’s starting to put together two signs (like “more food” or “cold milk“). She absolutely loves books and points to each picture and waits for us to make the appropriate sign. When she looks at the books by herself she also taps the picture before making the sign! We have lots of magnets on our fridge and one of Amelia’s favorite games is “Where is?”. We ask for an animal or other object and she plucks it off the fridge and hands it to us. Her attention span amazes us. She also loves shape sorters and puzzles of all types and works hard to get them in the proper spot. We use some of Siena’s doll house furniture and family to teach her and she tries her best to make them sit at the table or lay down in their beds.
Amelia’s balance has much improved. She sits very well and crawls, pulls herself up and cruises all over the house. She is now willing to push her little shopping cart and walk short distances while we hold on to one hand. She goes to physical therapy twice a month and they work with her to walk up stairs and ramps and get up from a sitting position. She gets to swing on a platform swing and reach up high to play basketball. At home she loves to walk between two people who will catch her when she falls, but she gets so excited that she runs instead of walking and we have trouble getting her to slow down to get her balance. Just recently she’s taken four independent steps without falling, so we’re making progress.
Amelia also goes to occupational therapy and there they work with her facial muscles to make them more flexible. She has to chew on various things and they manipulate her cheeks to give them more mobility. Her little smile seems to be getting a bit wider and she can now suck on a straw. We’re trying to get her to blow out, but so far she has not figured it out. They also give her tactile experiences, like getting her hands into a big box of dried beans or macaroni to dig out little toys. She’s always very eager to try all new things.
DJ and Kristina have taken Amelia for another visit to the House Ear Institute, this time to meet with a doctor. He concurred with the audiologists findings and feels that Amelia would be a candidate for the brain stem implant. The procedure is ready to be submitted to the FDA for the approval process this spring and funding is available for the clinical trials. BUT… this is the government and who knows how long this approval could take. So in the meantime the doctor suggested that Kristina and DJ contact the clinic in Italy to see if they are willing to take her. They have begun this process, but have not heard anything so far. I guess we’ll worry about the funding when we hear more. It’s very scary on all counts, so we continue to need lots of prayer support.
Since Amelia now has her little pink glasses which turn into sunglasses when we go outside, she is more willing to be in the sunlight. She still sneezes and her eyes water, but she tolerates it better. So when she is at Omi and Opa’s house we take her for a walk everyday and she likes to ride in the stroller. We found a European one that allows us to move the handle either to the front or back depending on the position of the sun. Usually we have her facing us so she can see us and we can communicate. She likes looking at all the different flowers and often people who are walking their dogs will stop to let her pet them. Our neighbors are all getting our know our special little girl.
The time just seems to fly by and I just realized how long it has been since I updated all of you on Amelia’s progress. She is now 20 months old and weighs about 25 lbs. She has lots of energy and her sign language is growing every day. At last count she can do about 25 signs and recognizes more than 65. She’s starting to put together two signs (like “more food” or “cold milk“). She absolutely loves books and points to each picture and waits for us to make the appropriate sign. When she looks at the books by herself she also taps the picture before making the sign! We have lots of magnets on our fridge and one of Amelia’s favorite games is “Where is?”. We ask for an animal or other object and she plucks it off the fridge and hands it to us. Her attention span amazes us. She also loves shape sorters and puzzles of all types and works hard to get them in the proper spot. We use some of Siena’s doll house furniture and family to teach her and she tries her best to make them sit at the table or lay down in their beds.
Amelia’s balance has much improved. She sits very well and crawls, pulls herself up and cruises all over the house. She is now willing to push her little shopping cart and walk short distances while we hold on to one hand. She goes to physical therapy twice a month and they work with her to walk up stairs and ramps and get up from a sitting position. She gets to swing on a platform swing and reach up high to play basketball. At home she loves to walk between two people who will catch her when she falls, but she gets so excited that she runs instead of walking and we have trouble getting her to slow down to get her balance. Just recently she’s taken four independent steps without falling, so we’re making progress.
Amelia also goes to occupational therapy and there they work with her facial muscles to make them more flexible. She has to chew on various things and they manipulate her cheeks to give them more mobility. Her little smile seems to be getting a bit wider and she can now suck on a straw. We’re trying to get her to blow out, but so far she has not figured it out. They also give her tactile experiences, like getting her hands into a big box of dried beans or macaroni to dig out little toys. She’s always very eager to try all new things.
DJ and Kristina have taken Amelia for another visit to the House Ear Institute, this time to meet with a doctor. He concurred with the audiologists findings and feels that Amelia would be a candidate for the brain stem implant. The procedure is ready to be submitted to the FDA for the approval process this spring and funding is available for the clinical trials. BUT… this is the government and who knows how long this approval could take. So in the meantime the doctor suggested that Kristina and DJ contact the clinic in Italy to see if they are willing to take her. They have begun this process, but have not heard anything so far. I guess we’ll worry about the funding when we hear more. It’s very scary on all counts, so we continue to need lots of prayer support.
Since Amelia now has her little pink glasses which turn into sunglasses when we go outside, she is more willing to be in the sunlight. She still sneezes and her eyes water, but she tolerates it better. So when she is at Omi and Opa’s house we take her for a walk everyday and she likes to ride in the stroller. We found a European one that allows us to move the handle either to the front or back depending on the position of the sun. Usually we have her facing us so she can see us and we can communicate. She likes looking at all the different flowers and often people who are walking their dogs will stop to let her pet them. Our neighbors are all getting our know our special little girl.
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