Journey to Katherine’s Cochlear Implant

Ever since Katherine got officially diagnosed with having a severe hearing loss getting a cochlear implant has been on my mind. We were initially told she was too delayed for an implant by the doctor who did the hearing test so I put off looking into it for a bit. And then I got sidetracked being sick and ended up on medical leave. During my time in the States I had time to research and think about the next step for each of my kids. It became evident to me that my next step with Katherine should include at least looking to a cochlear implant.

For Katherine getting a cochlear implant would help give her alternative means of communication. Because of her physical disability sign language is not an option. And most communication devices use either vision or hearing. But with her hearing and vision gone our communication options are limited to picture symbols which aren’t functional long term. My main hope for her with the implant is to give her a way to communicate with the world around her. Right now she is so cut off from anything that stimulates her. She is so caught in her own world and when we try to expose her to the world around it so over stimulating that she shuts down and goes to sleep. Her world consists of sleeping and eating. Getting some hearing is her best chance to break out of her own world and gives her the best shot at getting some better communication in place.

Katherine and I have been all over the hospital this week going to all the doctors that she needed to see. Luckily she has a friend to come with her! Eden, another baby living at Rescue, is deaf/blind as well so we’ve been able to combine a lot of appointments. The week of Christmas Katherine got her MRI/CT scan done. Her cochlear nerve was intact and fine so we were able to move forward and see more doctors.

We had to see an ophthalmologist who has quite helpful with Katherine. I had always thought that her vision loss might have more to do with her brain and less with her eyes and I was right. She can see and track some lights but not objects right now. The good thing is that with some vision therapy she can regain some of her vision. I’m going to start doing some work with her on her vision, if you’re interested in helping I put some items that we need for therapy on my Amazon India wishlist that need to be purchased! We’re also getting her glasses to see if they make a difference. Hopefully with some work we will see some small improvements with her ability to see some objects and lights. She will always be legally blind but if she can get some more functional vision that will help her in the future.

The next doctor we saw as the Neurologist. She thought that getting the cochlear implant would help simulate Katherine’s physical and brain development. Katherine has delays in all areas but I believe some of it is due to her lack of stimulation. Only have 3 of her 5 senses has really impacted her development. I believe she’s capable of so much but limited by her lack of communication and stimulation. The Neurologist seemed to agree and recommended she got a cochlear implant even if benefits might not be as great as it would be for a developmentally normal child.  I have been really impressed with every doctor we saw. I went into this expecting a fight and I was ready to go to bat for Katherine. So it’s been refreshing to have doctors agree with me and see some potential in a child that’s easy to write off.

After seeing the ophthalmologist and neurologist we ended up back at the ENT who looked at all the reports. He agreed that Katherine (and Eden) are candidates for a cochlear implant! He sent us to the man who runs SAHI, which is the organization that gives cochlear implants for free. We filled out their application and will return it today. And Friday we will go in for an interview with the committee and they will decide if they will give the implant for free. This organization typically likes to give implants to kids who are developmentally typical but we are really praying that we can convince them that Katherine and Eden are worth it. We all know just how wonderful they are and how much they would benefit from a cochlear implant so hopefully we can communicate that to committee. If not we will fundraise and get the funds for Katherine to receive the implant. After we hear from the committee we will move forward with either the surgery or fundraising and then the surgery. I will probably being doing most of the auditory therapy once the implant is activated so anyone with resources involving auditory therapy for multi-disabled children please send that information my way.

I’m looking forward to seeing where this journey will take Katherine. She is the child in my home that I think has the most untapped potential. Katherine is the SCH child that first stole my heart and she has made progress in the past couple of months. It’s slow and hard to see but she is making progress. She is an easy child to overlook and write off but she is so worth it. I love getting to advocate, work, and snuggle with her every day. I feel like a cochlear implant is the next best step for her to unlock the world around her. Please pray for us on Friday morning when we go before the SAHI committee. Getting this funding would mean we would haven’t to wait to do the cochlear implant surgery. If we have to fundraise the surgery will be pushed until we can raise the funds. I know Katherine is worth it, please pray that the committee will see that too!

 

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Dear Waiting Mamas this Christmas

Today was a wonderful Christmas spent with some wonderful children. My six children were spoiled with presents, chocolates, and lots of kisses. But the best present of all, a forever family, was absent today. I sat down to write a post about our Christmas but adoption has been on my mind so much today that I wrote about that today. I do my best to create a family for my kids but ultimately I’m just standing in the gap until a family steps forward to welcome them into their family forever. 

Dear Waiting Mamas this Christmas,

As I sit here watching my six children sleep I think about you. Whether you are days away from adopting, waiting to be matched, just starting your home study, or just had a feeling that there should be one more stocking on your mantle today, know that I thought about you while I celebrated Christmas with children who aren’t mine to keep. Today as I took photos of all my kids opening presents I took them for you. I took them with faith that someday my six kids would have forever families to celebrate Christmas with. I want you to have photos of the Christmas’ that you missed while you were waiting. And someday more than anything I want to show you these photos and give you the Christmas trees we made with your child’s once little feet.

Waiting Mamas know that we are standing in the gaps until you can get here. People from all over came together to provide Christmas to your child and to remind me that there is good in the world. Tonight we prayed for you, like we do every night. We prayed that next Christmas you would get to celebrate with your child. We prayed for more adoption matches, for adoption movement, and for potential families to see kids for who they are, not for their disability. Lying in bed tonight I prayed for families that looked around the table today and felt that there should be one more plate, one more chair, one more child to love. I prayed for God to give them the faith to welcome a new child like the Holy Family welcomed Jesus all those years ago. Know that as you wait we prayed and hoped for you.

I know the kids I take care of aren’t mine to keep. They are God’s and I pray that someday he will lead them to your family. Even when Caden calls me mama and melts my heart I know that someday he will call someone else mama. This Christmas my heart broke knowing that my six foster children don’t have any families pursuing them and every day I pray that a family will fall in love with the amazing children I know they are. Loving these children breaks and stretches my heart but I wouldn’t have it any other way. Some days I dream of adopting all six of them but in my heart I know these aren’t the kids I’m supposed to adopt. But as I kissed their heads tonight as they feel asleep and whispered to them that they were loved I saw the beauty that comes from being a temporary mama. I see how special it is to celebrate first Christmas’ with the kids that I love. Someday the kids that call me mom will be mine to keep but today I celebrated with the six God gave me to be a mother to in this season. Someday I hope that I can tell you stories from this Christmas. How Caden guarded his new toys and screamed whenever someone else touched them. How a local movie star, Vishunu Manchu, came to visit dressed as Santa Claus. How much we laughed and just enjoyed each other this Christmas. Christmas is a time of joy and there was joy in our lives today.

So to all those mothers whose armed ached a little bit more today for a child who is not home yet know that today we loved on your child. We celebrated Christmas and your child knows that God loves them so much he sent down his only son. Tonight we kissed your child goodnight and told them they were so loved. Today we stood in as their temporary mama. They may not have celebrated Christmas with all your traditions but we did the best we could. And we pray that next Christmas it will be you, not us tucking them into bed and kissing them good night. And I pray that this Christmas, if the children I will one day adopt are already born, that someone else is standing in the gap for me. Letting them know that they are so loved, until I can come get them.

Waiting Mamas, I know you wish your child did not have to go another Christmas without being home. But know that those of us who fill in while you wait did everything we could to make sure your child knew they were loved this Christmas. Waiting is not forever and we will take good care of your child until you can get here.

Love,

A foster mama to six kids

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Go Julie Go!

Since I got home on Tuesday Julie has blown me away with how far she’s come since I left! When I left she was only holding her up head up for about a minute at a time and was still pretty reserved. I would see snitches of her diva side and sometimes she would chat up a storm but not all the time!

On Wednesday I pulled her out of the car seat she uses as a seating device to work on sitting up. At first I sat behind her like I usually do and had her use her arms to support herself. She was doing so good I got up to get something, expecting to find her with her head on the ground when I got back. To my surprise she was sitting in the same position! After a couple of minutes she moved her arms so they were no longer supporting herself. I told her to push up and keep going and she proceeded to hold her sitting position for twenty minutes total! I was blown away. Eventually her arms got tired so I put her on her stomach. One of my ayahs got out some chocolate and told Julie to come and get it from her. She tried her hardest to crawl but didn’t quite have the coordination. I put her into a crawling position and kept an arm under her stomach and she crawled across the room to get the chocolate! Everyone in my house was cheering her on and I’ve been bragging on her all week. I don’t know what happened but this is not the same child from when I left in September!

Julie’s diva side has also exploded! She used to be somewhat quiet around new people but the other day I took her to the nearby store and she waved and said hi or bye to every person we passed! I remember the first time I took her out to go get lunch back in July she cried most of the way there and then refused to really interact with the people we were eating with. Julie really has come along way since I met her in May! She has been become quite the ham and is constantly talking and smiling. We have a world race team here this month and on Fridays we do sensory play on the roof with all the kids. This was the team’s first day and Julie charmed her way into getting one of the boys to pick her up and proceeded to talk his ear off for the next hour! She is still mainly speaking in Telegu and according to my ayahs most of it makes sense. She’s also known to see many bad words in Telegu, especially when she’s getting a shower or being made to do something she would rather not do!

Her academic progress has been slow. She’s very stubborn and won’t actively participate. The other day I tested her on her colors and she got 2 out of 4 but I’m so sure if it was pure luck or a true indication of what she knows. She has a one-on-one this month with one of the racers and they’re going to be focusing on academics. I feel like she’s ready to take off physically and academically and want to capitalize on that as much as I can. My goal for her this month is to master counting to 3 and recognize A-C. She is so smart but we haven’t found a productive way yet to really work with her on academic concepts.

Julie has really blown me away in the past week! As I’m writing this I can hear her in the other room shouting at Darren to come and yelling at every person that passes by. She’s the sassy diva of my house but she also loves being sweet to the babies. She has so much potential and I can’t wait to see what she’ll do next!

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