2017 Goals

This past week Brittany and I have sat down to write some goals and do some planning for the new year. With 11 kids it can be really easy for some to get lost in the shuffle so we wanted to make sure every kid had a clear goal that they were working towards for the new year. Looking over all the goals I think our overall themes for 2017 will be independence, social skills, and weight gain. In 2016 the kids made some great progress and we’re looking forward to what 2017 will bring!

Emerald

Pretty much Emerald’s goals are to keep being a baby and hitting appropriate developmental milestones! She should be getting a g-tube placed in January and a cleft palate repair in December of 2017.

Goals

  • Gain weight
  • More tummy time
  • Sit up independently
  • Continue to hit developmental milestones

Shiloh

Shilohs’s goals for next year is to thrive! Although she is still severely malnourished we are hoping that we can see her make some progress this upcoming year once we get her body out of survival mode. We recently got an MRI done that showed extensive brain damage but she’s still young so the brain has some plasticity during the first 5 years that we are hoping to take full advantage of!

Goals

  • Sleep through the night
  • More physical therapy
  • Better eating in a better seating device. Figuring out tongue thrust and sensory aversion
  • Gain weight. 2 snacks a day (morning/afternoon) with more protein

Josephine

Josie is pretty much developmentally on target so we would like to see that continue plus see more gross motor skills develop. Last night she said her first word- mama! She continues to be an incredibly happy baby who loves food! No weight gain goal for her 🙂

Goals

  • Crawl/bear weight
  • Saying simple words
  • Sit up independently (She can currently sit up but can’t get into that position by herself)
  • Finger/self feed food
  • Drink from a sippy cup- no more bottle! 
  • No more diaper rash

Abraham

Abe has come so far from the tiny baby I got in Delhi! He’s currently bearing weight and we hope that 2017 is the year he walks! He has some global developmental delays but he’s been consistently making good progress so we’re excited to see what 2017 brings for this silly boy.

Goals

  • Walk
  • Eat non-mixey food consistently
  • Tolerate more textures
  • Start saying simple words and requesting more.

Caden

Caden is also in the beginning stages of learning how to walk! He’s bearing weight and starting to show limited interest in walking. He’s also going to start attending an outside enrichment class this week along with Julie and Cara. Caden is a ham inside the house but as soon as we get outside he gets scared and starts crying. We’re hoping to widen his circle and allow him to get over some of his social anxiety.

Goals

  • Walk 
  • Talking more with words
  • Gain weight
  • Complete independent feeding
  • Bath 2x week and fingers wrapped individually
  • Counting up to 3, identifying colors and shapes, preschool concepts

Penny

Penny’s goals for 2017 are to be more independent! We would love to see our sunshine girl standing, eating by herself, and communicating with us.

Goals

  • Independent eating
  • Standing with Orthotics
  • Wearing glasses everyday 
  • Using picture communication consistently
  • Increasing attention span

Cara 

Cara had a pretty major year in 2016 when she learned to walk and finally got her surgery! For 2017 we’re hoping to get her completely healthy again and more independent as well. And get her comfortable outside the home- she’s enrolled in the same class as Julie and Caden!

Goals

  • Walk outside of Anchor Home independently
  • Climb up and down stairs
  • Preschool concepts
  • Gain weight- 2nd snack, eating more at mealtimes 
  • Better behavior (eating meals sitting down, no beating other children) 
  • Appropriate peer interaction

Katherine 

Sweet Katherine had a rough year in 2016! We put a lot of hope into her cochlear implant and then it got infected. Hopefully in 2017 we can get her reimplanted and get her back on track! We are also considering a hip surgery for her to address her hip that is out of socket.

Goals

  • Increase time in vision room (1 on 1)
  • Eating non-mixey food
  • Increased tummy time
  • Sensory integration
  • Getting a better seating device

Valor

Valor’s main goal in 2017 is to get a plan in place for his scoliosis and get communicating more! Valor’s new favorite thing is laughing when people cough. Luckily for him we have lots of that in Anchor Gold.

Goals

  • Afternoon snack to increase weight
  • Sensory Integration
  • Communication device
  • Switch activated toys/activities

Thomas

Thomas’ goal for 2017 is to be happy! The big man of the house loves to sit up in his wheelchair and watch the world go by.

Goals

  • Sitting up in wheelchair
  • Less “junky”- more suctioning and nebulizers

Julie 

Julie Baby’s goals for 2017 are to be more independent! She currently tells us when her huggie is wet so I think she’s ready to begin the process of being potty trained. Julie is also going to start going to an enrichment class with Caden and Cara and potentially start a school if we can find one that would work well for her!

Goals

  • Bearing weight
  • Preschool concepts
  • Dressing herself 
  • Potty Training

General Anchor Gold Goals

  • Oral hygiene
  • Bi-weekly ayah training
    • Feeding
    • Oral hygiene
    • PT
    • Helping children reach developmental milestones
  • Monthly ayah meeting
  • Get more kids sponsored

We’re so excited for everything 2017 holds! The beginning of the year always holds so much hope for what can come. In order to reach some of these goals we need some help.

  1. Purchase an item off our Amazon wishlist! This wishlist ships directly to us and has items that will help us.
  2. By helping us pay for Julie, Caden, and Cara’s enrichment class. We got a discount but it’s still $160/month for them to go. If you would like to help with this cost please email me at colleen at icmin.org!
  3. By sponsoring a child! 9 of the 11 kids still need sponsors. Check out My Indian Family for more info about which children need monthly sponsors!
Advertisements

Katherine’s Cochlear Implant: Another Surgery

I recently realized I haven’t updated about Katherine’s cochlear implant since we activated it back in May. A lot has happened and unfortunately most of it has not been positive. It’s been a one step forward, two steps back process at the moment.

The weekend after we activated Katherine’s implant we had to rush her to the emergency room on a Sunday evening. She had a rash and swelling over the incision site all day but while I was at church the swelling got significantly worse and there was concern that her thought was being affected as well. They decided she was fine and was just having an allergic reaction unrelated to the implant but I’m still not convinced there wasn’t some type of correlation as we’ve struggled with infection ever since. The next day the doctor drained the swollen area around the site of the implant and cultured it. The culture came back as staph and we started her on antibiotics. They sedated her and cleaned the area around the incision out and continued her on antibiotics. Soon after her surgeon left for the States to tour cochlear implant facilities there and I left for my visa break as well.

While I was in the States Katherine continued to have problems with with the infection reoccurring. Eventually after about a month of going back and forth to the hospital they thought they had resolved it. When I got back at the end of June she still had some drainage from the incision where they had cleaned the area out back in May. Luckily her surgeon had just returned from the States and I was able to take her back to him. At first they thought the infection was reoccurring because Katherine wasn’t wearing her external processor so despite the fact I don’t think there was a correlation I started having her wear the processor more. But the drainage persisted so I took her back to the doctor and he decided to sedate her again and redo the entire incision. During the surgery they found tons of infection and there was a biofilm present out the area which was essentially making the infection reoccur.

After the surgery the incision was actually looking really good. Katherine had a small area of infection reappear but they drained it and it looked like it was healing. I was hopeful that we were over this hump and she started wearing her processor and working though the programs. She had some problems keeping the processor on but we were getting creative with bandaids. When Katherine was wearing the processor she would get really quiet and seemed to listen to everything. She was tolerating them for about 3 hours at a time and was doing well with them.

IMG_0927.jpg

Getting creative with keeping the implant on

I started noticing earlier this week that there was more drainage and swelling by the incision site. I took her back to the surgeon and after waiting 3 hours every doctor in the ENT department (literally every single doctor in the department) pow-wowed and decided it was in her best interest to remove the implant. Katherine’s surgeon was incredibly kind and reassuring that it was nothing we did wrong and it just happens sometimes. He said he has done 1000 surgeries and had it happen 4 times. Sometimes it just happens through no fault of anyone. Staph is just a surgical risk and Katherine just doesn’t play by the rule book!

The current plan is to take the implant out on this upcoming Monday and then in a month they will go back in and implant the other side. Unfortunately this plan will leave her with no residual hearing essentially leaving her completely deaf whenever her implant os off. Right now she has some hearing in the left ear (very little but some) but after surgery she will have none.

Although it’s all been incredibly frustrating I still believe the cochlear implant is Katherine’s best shot with interacting with the world. I hate to see her in pain and have to put her through another surgery but right now it’s in her best interest to pull the implant out and start over. God has carried us through this whole process and will continue to protect and guide her. I may not understand why she’s going through all this but we’re choosing to trust and pray. Please join me in praying that we can get rid of this infection once and for all and that the other implant will be successful!

Katherine’s Cochlear Implants: Surgery Time!

This journey to get Katherine hearing has tested me and had many detours but we finally have a surgery date! This Monday, April 11th, Katherine will be getting her cochlear implant! It has been quite the road to get here but finally it is happening!

Fundraising for this surgery was a challenge and there was a point where I got so discouraged I did not think it would happen. But a whole community of people pulled through and made sure that this little girl got the funding she needed. We actually got beyond fully funded! It gives me goose bumps every time I think about how so many people pulled together for a little girl they had never and probably will never meet.

At the beginning of March I was ready to start the surgery process but then there was a delay with the wire getting the money over here. Once we got the money over here and in the right account there was a problem with the hospital side figuring out where they money was. That adventure culminated with me crying in the office of the head of the hospital’s finance department and finally getting it all sorted out.Once I had everything sorted out on their side I booked an initial surgery date. When we went for our pre surgery check up the surgeon was concerned about some head fungus on her newly shaved head. We treated that for 10 days, got clearance from the dermatologist, and headed back to the surgeon one more time for yet another surgery date! It’s been quite the process and I’m convinced Katherine is going to do something great with this implant because the amount of roadblocks we have hit has been crazy.

After the surgery they will activate her implant after about 21 days. At that point she will start wearing the external processors. The processors are magnetic so they will attach to the internal part of the implant and then a part will rest on her ears plus there will be a battery attached to her shirt. I’m interested to see how well they will stay on as she has some stims due to her visual impairment and moves her head back and forth a lot. After Katherine starts wearing her external processor she will start Auditory therapy to help train her brain to recognize speech. The implant will give her the ability to hear but without training she will have no idea what all the sounds she is hearing means! The hospital we are doing the surgery does follow up therapy but I’m still debating whether to put her in therapy there or not. Eden and Katherine are the first blind children to be implanted at the hospital and I saw some of their therapy the other day and I was not impressed. I’m leaning towards just teaching her at home but we will see how Eden’s therapy goes.

We are getting everything ready for Katherine to go to the hospital on Sunday. The plan is to admit her on Sunday with one of my caregivers and then I will go up on Monday when they do the surgery and switch out. We will spend Monday evening at the hospital and then get discharged on Tuesday. We are all very excited for this next step in Katherine’s life and are so thankful for everyone who played a role in getting her here!25016348595_3cf6a8abdf_z

Katherine’s Cochlear Implants: Next Steps and Fundraising

I’m so excited to announce that Katherine got the funding from the local organization to get her cochlear implant! It was an answer to so many prayers and means we can move forward so much faster with getting her implanted. The organization, SAHI, does not typically fund children with multiple disabilities so we are so thankful they decided to fund Katherine and Eden’s cochlear implants. They will cover the cost of the implant but I need to fundraise the surgery fees, about $3,000. There are three ways to get involved with giving Katherine the gift of hearing:

  1. By giving a tax-deductible donation through this link: http://tinyurl.com/CochlearForKhttp
  2. By purchasing a print. They are 8×10 and will be printed on heavy duty paper. The cost is $20. To purchase a print please send your money through paypal to colleenawilliams22@gmail.com. Make sure to put your name, email, and mailing address in the comments section. Prints will ship by mid-February and they will look beautiful hanging up in your homes or given as presents. 
    IMG_3694[1]

    Purchase this print for $20 to help Katherine get her cochlear implant!

  3. By sharing this blog post with your friends and family

After we have all the fees for the surgery covered we will go ahead with the final doctors appointments and book a date for surgery. I’m hoping to be able to do it by the end of February. Early intervention is key so getting her cochlear implant done as soon as possible is my goal.

I’m so excited to see what Katherine will do once she has the implant. I jokingly told her yesterday that she would not be able to sleep through all the crying that goes on in my house once she has her implant! I still get so excited thinking about her getting funding from SAHI. When we went in for our interview for the SAHI funding they questioned whether or not we knew what we were getting ourselves into with the cochlear implant. They seemed hesitant to give it to the girls because the potential good that could come of it was “low”. But I know that Katherine will prove them wrong and blow us away. Would you join us in helping Katherine reach her maximum potential? It would mean the world to Katherine and me!

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!