December 2010
During this busy time of the year it’s hard to keep up with all the happenings, but I wanted to make you aware of a few things that are happening with Amelia and to encourage you continue to pray for her.
The insurance company finally approved some visits to the House Ear Institute in Los Angeles and at the end of November Kristina and DJ finally got take Amelia for her first appointment. They met with an audiologist who conducted a hearing “booth” test and she reviewed the MRI and CT scan information from Rady Children‘s Hospital, which DJ and Kristina had brought along. They talked about the possibility of a brain stem implant and found out that this procedure has been done successfully for adults, but is not yet approved by the FDA for children. While approval is being sought in the US, other countries are currently doing the procedure on children and Italy is one of them. There is some encouraging documentation to support their work. The next step is to see a doctor who has a particular interest in auditory brainstem implants in children and then talk to Dr. Coletti who does these procedures in Italy. Naturally this involves lots more phone calls, e-mails and paperwork to seek approval from the insurance company. The best results for future learning and speaking are achieved by the earliest intervention, so Kristina and DJ are moving forward with this path.
We are all a bit nervous about the whole thing, so we need you to pray with us for God’s will in this endeavor and for doors to open to allow it to happen in a timely manner. And of course the whole thing is wildly expensive, so the Lord needs to provide the necessary funds as well. I know that He is up to the challenge if this is to happen.
Meanwhile Amelia is enjoying the Christmas season and all the interesting decorations everywhere. She is surprisingly good about not touching everything and even makes the “no” sign when she approaches the tree. Her ophthalmologist recently prescribed glasses for Amelia, because he determined that she is very near-sighted, so a few days ago she got a brand-new pair of pink glasses. She tolerates them for a short while and then hands them back to us. It’s hard to tell if the glasses are helping, but she does look a bit startled every time we put them on her.
The Burkes and Hestons wish you a wonderful Christmas and God’s blessings in the New Year.
Tuesday, January 25, 2011
Friday, October 15, 2010
October 14th, 2010
I haven’t had much time to write about Amelia’s progress lately, since we were dealing with some of her grandpa’s health issues. But he seems to be on the mend now, so I’ll try to get you caught up.
We don’t have nearly as many doctor’s appointments now which is nice, but we still take her to occupational therapy, physical therapy and she has been to the ENT clinic, the endocrinologist and the family physician. The endocrinologist did another blood work-up which showed that her growth hormone is still low, but she has been staying very consistently on her growth curve in the 25th percentile, which is pretty good. At her one year check-up she weighed almost 20 lbs and was 29 inches tall. The visit to ENT showed both ear tubes clear for the first time. A couple of weeks ago we were very worried about a lot of discharge from her eyes and a quick visit to the eye surgeon revealed that she has a blocked tear duct. Some surgery may be needed to deal with that in the future. Her eyes are extremely light sensitive and she does not like to be outside when the sun is shining. She hates hats and sunglasses don’t fit on her nose, so we are quite limited with outside activities.
Kristina’s efforts to have Amelia evaluated at the House Ear Clinic in LA have been absolutely frustrating! You would not believe the number of phone calls, faxes and the amount of paperwork that has gone into trying to get the insurance company to agree to this. After two rounds of appeals (each requiring about 30 days) they finally approved the visit, but when Kristina tried to make the appointment at House Ear, she was told they did not accept her insurance company! At this point the insurance company itself is appealing. We just keep praying for the Lord’s timing in this.
Amelia is of course quite unaware of all of this hassle and is having fun learning new things every day. She is still not walking on her own, but getting a bit more adventurous. She has been cruising along the furniture for such a long time that she only knows how to walk sideways, but lately she is trying a few forward steps. She loves all her toys, especially wooden puzzles and board books and things that fit inside each other or have levers to pull and buttons to push. She’s very curious and explores everything she can reach. She pokes her head behind the doors, under tables and chairs and inside cabinets. She’s willing to eat just about anything we put on her high chair tray and she recently started holding her own bottle. This may not seem like such a big deal for most babies, but since Amelia has very little suction and has to chew on the nipple while squeezing the bottle at just the right rate we think it’s a great accomplishment.
Her sign language vocabulary is growing also and she is trying to communicate with us in her own little way. She is now only wearing her right hearing aid and is tolerating is much better. As far as we can tell there is no hearing, but until we know for sure we’ll keep using it. Please continue to pray that we will be able to meet all the challenges ahead for Amelia.
I haven’t had much time to write about Amelia’s progress lately, since we were dealing with some of her grandpa’s health issues. But he seems to be on the mend now, so I’ll try to get you caught up.
We don’t have nearly as many doctor’s appointments now which is nice, but we still take her to occupational therapy, physical therapy and she has been to the ENT clinic, the endocrinologist and the family physician. The endocrinologist did another blood work-up which showed that her growth hormone is still low, but she has been staying very consistently on her growth curve in the 25th percentile, which is pretty good. At her one year check-up she weighed almost 20 lbs and was 29 inches tall. The visit to ENT showed both ear tubes clear for the first time. A couple of weeks ago we were very worried about a lot of discharge from her eyes and a quick visit to the eye surgeon revealed that she has a blocked tear duct. Some surgery may be needed to deal with that in the future. Her eyes are extremely light sensitive and she does not like to be outside when the sun is shining. She hates hats and sunglasses don’t fit on her nose, so we are quite limited with outside activities.
Kristina’s efforts to have Amelia evaluated at the House Ear Clinic in LA have been absolutely frustrating! You would not believe the number of phone calls, faxes and the amount of paperwork that has gone into trying to get the insurance company to agree to this. After two rounds of appeals (each requiring about 30 days) they finally approved the visit, but when Kristina tried to make the appointment at House Ear, she was told they did not accept her insurance company! At this point the insurance company itself is appealing. We just keep praying for the Lord’s timing in this.
Amelia is of course quite unaware of all of this hassle and is having fun learning new things every day. She is still not walking on her own, but getting a bit more adventurous. She has been cruising along the furniture for such a long time that she only knows how to walk sideways, but lately she is trying a few forward steps. She loves all her toys, especially wooden puzzles and board books and things that fit inside each other or have levers to pull and buttons to push. She’s very curious and explores everything she can reach. She pokes her head behind the doors, under tables and chairs and inside cabinets. She’s willing to eat just about anything we put on her high chair tray and she recently started holding her own bottle. This may not seem like such a big deal for most babies, but since Amelia has very little suction and has to chew on the nipple while squeezing the bottle at just the right rate we think it’s a great accomplishment.
Her sign language vocabulary is growing also and she is trying to communicate with us in her own little way. She is now only wearing her right hearing aid and is tolerating is much better. As far as we can tell there is no hearing, but until we know for sure we’ll keep using it. Please continue to pray that we will be able to meet all the challenges ahead for Amelia.
Tuesday, August 24, 2010
laughing video
I have been trying to post a video for about a week now and just can't get it to work. I am trying a shorter one just to see if it will go through............
Monday, August 23, 2010
Communication
August 2010
At almost 14 months Amelia is trying hard to communicate with us by watching our hands and trying to imitate our signs. I made a list of the ones I have actually seen her do and there are about 20 of them by now. Of course there is “eat, more, milk, mom, dad, up and hat”, but she’s signing so many more now, such as “flower, bird, cat, dog, fan, cold and butterfly”. Usually the signs are just random, which means she is “babbling” with her hands, but she is beginning to do more than just imitate and has signed “eat” or “milk” when she’s hungry. The easiest way to teach her more signs is when she is sitting in her highchair and we have both hands free to show her a picture or a toy and make the sign for her. She is very attentive and will sit for quite a while for these “lessons”. We have covered just about all the farm and zoo animals now and many toys and clothes, probably about 30 more signs. She loves it when I play “where is …?” with her and hide an object for her to look for. It’s such fun to see her brain develop in this way and I hope that we can keep a step ahead of her in learning sign language.
Amelia also seems to realize that we have to squeeze her bottles for her when she drinks, so she let’s know when we’ve stopped squeezing by growling at us. Or sometimes she’ll touch our hand to get our attention. It works!
At almost 14 months Amelia is trying hard to communicate with us by watching our hands and trying to imitate our signs. I made a list of the ones I have actually seen her do and there are about 20 of them by now. Of course there is “eat, more, milk, mom, dad, up and hat”, but she’s signing so many more now, such as “flower, bird, cat, dog, fan, cold and butterfly”. Usually the signs are just random, which means she is “babbling” with her hands, but she is beginning to do more than just imitate and has signed “eat” or “milk” when she’s hungry. The easiest way to teach her more signs is when she is sitting in her highchair and we have both hands free to show her a picture or a toy and make the sign for her. She is very attentive and will sit for quite a while for these “lessons”. We have covered just about all the farm and zoo animals now and many toys and clothes, probably about 30 more signs. She loves it when I play “where is …?” with her and hide an object for her to look for. It’s such fun to see her brain develop in this way and I hope that we can keep a step ahead of her in learning sign language.
Amelia also seems to realize that we have to squeeze her bottles for her when she drinks, so she let’s know when we’ve stopped squeezing by growling at us. Or sometimes she’ll touch our hand to get our attention. It works!
Subscribe to:
Posts (Atom)