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.

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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!

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Anchor Home

“This we have as an anchor of the soul, sure and firm, which reaches into the interior behind the veil” Hebrews 6:19

I’m so excited to announce that my house will be moving from the rooftop and into SCH’s newest home- Anchor Home. It’s been a long search for the prefect home for a group of kids from Rescue and we finally found it!

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One of the most exciting parts of this home? It has an elevator. That means no more breaking my back lugging Valor’s and Thomas’ wheelchairs up and down stairs. If we want to go on a walk we can just ride the elevator down and head out. And in the long run many of our smaller children are getting bigger and will need the support of a wheelchair. This lift will make sure they can still access the outside world!

The other exciting part? I’m getting my own bedroom and bathroom. May not seem like much but after sharing one bathroom for 12 people for the past year it’s a big deal.

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My new bedroom. A peaceful blue color.

The other exciting part of this new home is the set up. The Bakers, a family that works with SCH, will live on the first floor. The second floor will be their kids and a sensory area. The third floor will have my kids and my room plus our school room. There’s also a rooftop for the kids to play on and a small garden area where they can play too. We are so excited to set up the home and help all the kids get everything that they need to thrive. Many of these kids are easy to forget about and ignore because they can be harder to interact with due to their disabilities. But we are hopeful that with the right set-up and environment they can truly thrive!

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School room!

Right now the plan is to move the kids into the new house once we have all the renovations done and the home child proofed (hello giant gaps in the stairs!). Probably closer to the end of the month once we have some teams come through in the next couple of weeks and help us get everything in shape. Pretty soon I will have an amazon wishlist with some things we need to outfit our new home but today we are so thankful that God that abundantly answers our prayers!

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Our new home!