Oklahoma Eye Gaze Update

Hadassah has been doing well since her hip surgery. She was sore for about 3 weeks and is starting to comeback from that. She's hasn't moved her legs much at all yet so we are starting to work on that again. While at PT her therapist was moving her legs and a big smile came on Haddie's face. I think she misses moving and crawling so we are praying that comes back quickly.

The big news is we are headed to Oklahoma tomorrow with Haddie. Jeff Dimick from OVU told us about 2-3 months ago about someone he knew out at Oklahoma Christian University who had developed Eye Gaze technology for ALS patients. As you may know ALS is a terrible disease that will take a fully functional person and reduce them to the point where they cannot move at all...well almost. They can still control their eyes. So technology has been developed where a patient can look at a screen and then make a choice with their eyes. This isn't brand new technology that this guy (Steve Maher) has developed. But his desire is to make it much much more affordable. His unit costs around $3000. The next closest is around $10,000 we've been told. Here's the link to the video on it...it's worth a look!

https://youtu.be/CeJtSLkCD58

So our thought was "this works on people who've lost function, can it work on a kid who is learning how to function?"

We called him and told him about Haddie. He said that he was very interested in trying this out on kids and Haddie would be the first. We truly believe she can make choices using just her eyes. His programming would need some tweaking but he believes it is worth a shot. Yes, there is existing technology out there for kids already but once again the price is rather steep. So the plan is to go out and test the equipment on Friday. Then on Jan 16th Ewing has arranged to bring in some Eye Gaze technology that the school has and test it on her. This will give us a more well rounded idea of what might work best for Haddie.

We ask for your prayers. Mainly that we can get there without any issues. We are flying to save time and driving. We are a little nervous about Haddie's shunt and the pressure changes and also the whole carseat thing. We have a plan and think it will work but you never know how it'll all work until you do it.

Also pray that this can work for her. When we look into Haddie's eyes we see light. We see intelligence. There's a personality there. Yes, she's had a level 4 brain bleed on both sides of the brain. Yes she's had seizures. Yes she has delays. But that hasn't stopped her from doing things and developing. A delay by definition means that things will be slower...but it still can be done. It's an obstacle to move around. We believe that there is something there and that she can think. How frustrating it must be to think but not communicate. That's why we are headed to OKC.

Thanks for your thoughts and prayers.

Post Hip Surgery Update

Haddie went in Monday for double hip surgery and everything went well. They did not have to cast her. They couldnt even put a brace on her because her little hips are so tiny...they didnt have a brace small enough. So they just positioned her using pillows. She was very sleepy on Monday and Tuesday. Plenty of pain meds to keep her comfortable. They originally said we would get out Wednesday. Kate and I know that when they give a day for discharge you might as well add 2-3 days on it. And that's been the case. Haddie tends to scare nurses with some of her Haddie-isms. One of which is her raspy breathing after eating. So they gave her a little oxygen. They didnt like when she coughed on her oral meds so they put them in her IV. So all of that is stuff we have to come back off of. They have to be safe and they don't know Haddie so we arent mad or anything. Haddie just likes to make things complicated!

She ate great yesterday and they took the oxygen off and this morning she should be off her pain pump. So if all goes well we should be discharged today they said...so we are planning on next week being discharged! Just kidding. Hopefully today we'll take our princess home and get her on the road to recovery. We don't have to worry about a brace. We'll just have to use pillows and whatnot to keep her legs from coming too far apart while she heals.

She's a tough little fighter. The hardest part is figuring out how much pain she is in or was in. She can take an awful lot. Thanks for your prayer and your love for my family. God is good.

October Blog Update and Surgery News

Been a good while since I gave an update here on life with Haddie. It's amazing how fast life goes by. I remember our first post here and how that just seemed like yesterday. And here we are with a 4 year old Haddie and a walking and chattery 1 year old named Ansley. Life moves fast.

Haddie has been making a lot of progress recently. She has been doing a lot of what we call planking. She will lay on her stomach and we will hold down her legs and butt. We will give her a little support and she will lift her head and neck all on her own. This is huge progress for her. We are hoping this leads to more and more trunk control.

Haddie has also been given the privilege of getting a Go Baby Go Car. Her therapist at Marietta Memorial selected her to be one of three students to get this car. They basically let us pick a Toys R Us battery operated car and they fit it to Haddie. The cool part is that they will install buttons that Haddie can push so she can control the car. We choose a pink Jeep. This is Haddie getting fitted for it. It will be a good therapeutic tool for her moving forward (pun intended)

We also believe she is able to express what she wants using her eyes. We will ask her yes and no questions and tell her to look one way if the answer is yes. Most of the time she answers the way we think she would. We can also hold up two objects in front of her and ask her to choose which one she wants and she will do it. We have a connection to an engineering professor who has developed an eye gaze system that allows people with ALS to communicate with their eyes. Many of them cannot control anything but their eyes so he made a program that could allow them to communicate using just that. These are people who had full function and lost it. So we wondered if he could create something for a kid who is still developing and figuring out how to function. We have begun to talk to him about developing something for Haddie. We plan to make a trip at some point to meet this guy and let him meet Haddie. We are hopeful that this could be the start of something really good for Haddie's communication in the future.

The sad news is that we have a surgery on the horizon. Had has been taking Botox shots over the past few months and these have helped loosen her up. It took a couple tries to get the right dose but it has been working good. At our last appointment the doctor asked us to get hip xrays on Haddie because she seemed tighter in the hips. The xray revealed that her right hip is dislocated and her left hip is starting to dislocate. Kids with spastic muscles like Haddie have a hard time putting pressure on the legs which in turn keeps the hips up in the socket. The only option (besides doing nothing) is a surgery where they will cut the bone and push it further into the socket. They will do this on both sides. She will need to be in a brace for 3-6 weeks afterwards...that is if she has good bones. If they have any problems they will have to put her in a cast instead. We are praying for the brace.

We have no way of telling if Haddie will ever walk. But we do know that this will prevent her from having the chance. So we are going to put her through it in order for her to have that chance. She's a tough little girl.

Her little sister continues to grow and be a light in our lives. She's a little ball of joy. She seems to get along with Haddie pretty well. She knows not to pull Haddies hair and she tries to shake Haddie's hands to get her smile. We are blessed to have these two girls in our lives. We appreciate your continued prayers and thoughts. We head in for surgery November 6th, so we'd ask for your prayers again that day. God is good.

Looking Back

It's amazing what can happen in 4 years. It's also amazing how fast 4 years can fly by. In high school I felt like 4 years took forever...but it really didn't. College was a blur that went by so fast. And now when I look back 4 years I'm reminded of one of the scariest and craziest days of my life. It somehow seems like a distant dream and yet at the same time like it was just yesterday.

Today is Haddie's 4th "Butt Birthday". 4 years and 4 days ago we went to Children's Hospital of Philadelphia just to get evaluated. OSU told us we had better go just in case Fetal Surgery was needed. We never imagined that we would actually need it. They ran a full days worth of tests at CHOP and told us the tumor was stable but we'd have to stay in the area and not go home. Then just 4 days later, the test showed that the tumor had grown significantly and we had a super small window of time to undergo the fetal surgery or it would be too late.

That just seems so surreal. That's the stuff you see on TV. That doesn't happen to normal people like us. But it did. And we posted about it on this blog. And you all prayed like crazy. And Haddie lived.

It's been a great 4 years with Haddie. I don't update this as often as I used to because not as much is happening. It's just normal life now with 2 kids. Haddie's development is still very slow coming...but it is coming. When we look back a year or two ago at her alertness and level of cognition...man has she improved. She loves going to Ewing school. She learns so much there and they challenge her. She also still does therapies weekly over in Marietta.

Her recent EEG shows that she still has very irregular brain waves. But for her the waves looked good. No crazy seizures like in the past. Shes still on the meds that help control those. Now many of you have asked "how does she like her sister". Ansley really likes Haddie. We aren't sure how much that is reciprocated. Mainly because ansley is loud and a little "hands-on". She likes to grab Haddies face and her hair. And Haddie likes her personal space!

What excites us the most is seeing Haddies personality. She doesnt talk. She can't move much. Yet we are learning more and more how to read her. She says a lot with her eyes. We believe she can think and has opinions. So we try and give her choices and she has to use her eyes to choose. We do not think she's just "brain dead". Her brain is just different. And it's our job to unlock that and figure her out. And that is a challenge yet at the same time a blessing.

She is here. She is alive. She is growing and progressing. And that is a miracle that we won't ever take for granted. Thank you for remembering her 4 years ago and thank you for remembering her today. We know many of you still pray for us and we cannot thank you enough. God continues to use a little 25 lb girl to change lives and encourage people. God is good.