new stuff to learn

Christmas has come and almost but not quite gone yet. We'll be celebrating until the second week of January so our festivities continue on.....

We are all caught up with the excitement of our move to the country...the kids are counting the days until they can wander the hills and woods and their dad works only a couple of minutes down the road.

Amongst this excitement of future possibilities, there is an excitement in our home about Gus. This past week or so he has 'woken up' a bit more. He is more alert, more aware, and more involved with life. He enjoys putting his hands in the glue his OT uses for crafts, smearing it around and then loudly declaring that he enjoys or dislikes putting things on the paper. His attention now fixes on people, tracking them across the room when they come in and smiling quickly when they come close to him. Even in the ER, when having a port put into his arm, I was able to distract him by singing 'Old McDonald' to him and waiting for him to sing the 'O', which he happily did.

We visited this past week with a Feldenkrais Practitioner here in St. Louis. We went for a couple of visits to see how Gus would respond. The Feldenkrais Method (as far as I understand) is a method of movement that engages the brain and is primarily an educational tool, to teach people how to move better. For Gus, the education is for me and others who take care of him. The whole session is spent teaching us how to move him and how to teach him about his body. I took notes each time. The biggest, most important lesson we learned is how Gus moves. He currently moves from his chest. All of his movement, all of his effort, all of his energy is centered in his chest. We learned that most of his frustration and lack of coordination is because he is trying to make the movements through his chest instead of his abdomen and lower back.

Over the past year, we've developed some bad habits in how we've handled or positioned Gus. We often would move his head to the center or use his shoulders to straighten his back. Now that we know that his movement needs to come from his trunk, we are using that to reposition his back, his head, or any other movement. After doing this for just 5 days, we noticed that his shoulders and upper back were loose even without stretching. His arms are loose and stretch out more. He is also happier overall with much less frustration. He usually hates being left on his back on the floor but his comfort level in this has also increased. He is a great deal more tired but not crabby, just more relaxed. He even fell asleep in the carseat (he has hated car rides for a long time now).

This seemingly simple concept was completely unknown to us and has made a big impact on how we interact with Gus. Families with children with Cerebral Palsy talk about this method as well as the Anat Baniel Method (based on the Feldenkrais Method) and how much progress their kids make with them. These are not covered by insurance but most families familiar with them say that they are more worthwhile than many of the other therapies available. We are going to continue with this practitioner for the next few months and see if Gus continues to respond well.

Currently, there is concern by Gus' other therapists about his tight wrists. They would like to use Botox to loosen the tight muscle and allow time for the weaker muscles to gain strength and elasticity. We did this last year with his upper arms and progress was made with even just a small dose. With the progress of just this past week with new ways of moving him, we are encouraged to wait and see if we need to do a Botox treatment...already his wrists are more controlled.

We would appreciate any prayers concerning our knowledge and understanding to help Gus move better. One of the thoughts behind these methods, that I've read over and over, is that these kids can move, they just need to be shown how. Simple movements that Gus was taught last week he learned. I tried them on him later, and he repeated them - even moving his right shoulder toward his left knee. This is an answer of prayer for me. We covet your prayers. Thank you for caring.

moving to the country!!

Here's a few recent pictures...

Latest news....

we are moving to Cape Girardeau in the next few months...Matt got a great job working with a fantastic farm (www.familyfriendlyfarm.com)...so, we get to live in the country again and Matt gets to do what he loves best - working with sustainable agriculture.....

we are really busy with school, therapy, church, buying a house, and transfering everything (Gus is signed up to have therapy services from the Kenny Rogers Center in Sikeston, Missouri: http://www.kennyrogerscenter.org/ but we won't yet cut the ties we have with Ranken Jordan here)....

Gus really enjoyed watching Luke from our church perform in the Nutcracker on Ice (he really liked the lights and colors all over the place). It was a pleasant surprise to take him to an event and enjoy it.

Thank you for your continued prayers. Please pray that everything goes smoothly for our moving venture. I'd also like to ask you to pray that we get a vehicle that would meet our needs better. As Gus gets bigger, having a van that is handicapped equipped would be vital. We don't need one right now, but I'm putting my prayers in anyway. :)

Also, I'm concerned about Gus' back. We stretch, exercise, and move him around but scoliosis is a very real possibility for him unless he learns to sit up on his own and begin to move around (crawl, walk). I'm researching a bunch of stuff that others have said worked for them but most are too expensive. One method, offered close to here, is just within the affordable/but expensive range. We hope to try it out before we move to see if it helps him function better. It's called ABM: the Anat Beniel Method. Please pray that I would know exactly what to do and where to look to help Gus the best that I can.

We will be doing a swallow study on Gus again, to check out what he's doing in there.... Lately, he's been having panic attacks (freaking out) while eating, but not everytime. They want to make sure he's doing okay with food. Please pray that he is. We ask him what is wrong, but he can't tell us.

Thank you for your prayers. I know that is why God's grace is evident in our lives.
Gratefully, esther

Sleepy day today....


The next project we finished...a table for Gus' feeder seat (we do tons of stuff in the feeder seat so it's really nice to have the table for him). Matt and George just finished it last night and Gus already loves it.

Here's a picture of Rose reading Gus to sleep today...we wondered why he was so quiet.

beautiful day

Yesterday out again on his trike. (His hands are wrapped with Coban tape to keep them on the handle bars.)

...keep happening

Gus is doing better all the time. We thought he might plateau on his progress any time now but he just keeps surprising us. His desire to keep moving, suddenly rolling over or throwing himself out of our arms (only to laugh really hard at us) keeps us moving.

He is making new sounds but not really any words. We'd really appreciate prayer that he could speak clearly. It is so frustrating to him as he makes the same sounds over and over and we just don't understand him. He looks worried and confused often.




We finally finished the book:



We 'read' it every night to him, talking about the events of the day. Each of the items in the book are the same items we use when we go to do each thing. (For example, the rug stands for 'belly time' and the keys represent going somewhere in the car.) This will hopefully lead to an understanding that books are a representation of a story that happened, like with his book.



Molly is desperately trying to walk, but loves to show off how she can stand without support. We tell Gus that he feels the encouragement from her because lately, he wants to stand more on his own too. He suddenly holds himself up, with little or no help from us to maintain the stance (we do help him get to that position to begin with).

Thank you for praying...miracles keep happening. God is so good.

Communication Board

We had a visit yesterday from Jo, Gus' vision specialist. Her genius for communicating with kids with vision difficulties is amazing. I showed her the board we made last week and she modified it. The side with all of the 'visual cues' are some of the options we give Gus and would like him to choose from. She put two tabs of Velcro on the other side so that the choice is simplified. We take two options, place them on the other side and Gus chooses one. We are having him look at the one he wants and then touch it. Some days he refuses to look...other days, he refuses to touch...and then other days are fantastic and he does exactly what he needs to do. So, here's the modified version of the board. We'll be changing it as he gets faster and better at letting us know what he wants.





My homework from Jo is to make a book that we read to him each night with object cues representing the activities of the day. I'll let you know when that's done.

Trike Time!

Here's the finished tricycle...











He loves it. We've been around the block and he enjoyed every minute.














Even Molly likes it.












The communication board this past week has been a little bit more effective...he's actually grabbing the spoon when he's hungry!













This is the latest art project done with his home therapist (OT).
Hopefully we'll finish another project this weekend....

Over the last year and a half, we've been thrown into a world we knew nothing about. I found whatever I could online about anoxic brain injury and read tons of blogs. Some were helpful in just helping us to feel that we weren't alone. Others were helpful in telling what therapies worked well and which ones were not worth the effort. I've appreciated all of the help that others offered and in light of that, I'd like to let you know of the different projects we've come up with that have been helpful to Gus.

The Swing
This past spring, we made a swing, similar to the ones posted by others who have children with autism. I altered the design to use heavy duty upholstery material (super soft on one side) and made it with plenty of material so that he could grow with it. On one side I put snaps to support him so that he can sit sometimes while swinging. We put a dragon pillow in it for him to ride on when he is on his belly which helps support his head when he is a little too tired.

Eating
We've worked hard this past summer on having Gus eat by mouth with the goal of getting rid of his g-button. There were definitely some ups and downs but we've come far. One of the things that has made the biggest difference for Gus to want to eat is eating with us, especially the same food we eat. Now, if we are eating and holding him (after he has finished eating), he complains very loudly until we give him some of our food, until it is all gone (or at least until we say it is). Because he has done so well, the dietician said yesterday that we can cut back on more formula...hoping to be formula free very soon.

The Communication Board
To help with understanding him, our latest project is the communication board. A lot of the communication devices given to kids like him are electronic and expensive. Gus isn't at the point that he could get one of those (through insurance) but we needed to work on understanding him better so we made this board. Each of the objects represents something - the cloth diaper (to have his diaper changed), the red cup (to have a drink), the purple spoon (to eat some yummy food), the blue ball (to bounce on the exercise ball), and the pink wind-up butterfly (to play games with someone). As he gets faster, we'll add more options. The goal will be to have him look at the object and then touch the object that expresses what he wants to do. Eventually, we'd like him to be able to take them off and bring them to us (they are stuck on with a Velcro strip).

The Tricycle
Our next objective is to help him with walking. To help his brain establish the pattern needed for walking and running, a cycle is very helpful. The tricycles available for kids like Gus are pricey so we've bought a Radio Flyer trike with a long handle in the back (for the adult to steer with) and we're working on making a seat to support him. He loves being pushed around outside with his legs moving like that. We hope after a while he'll be walking better at therapy. I'll let you know when we finish with that one.

The Backpack
Last spring we started using a backpack for Gus. He rides on our backs when we go for walks. The rhythm of the walking and the outdoor input/stimulation has helped to calm him and give him the exercise he needs (he sits up straighter and his neck is stronger from it).

E-Stim
One of the therapies that have been really successful for Gus is E-Stim on his face. Twice a week, Gus has stickers put on his face that emit a small amount of electrical current, enough to stimulate the muscles to contract. Since this has started he has made new noises and is better at closing his lips.

HBOT
Many of the nearly-drowned children stories that I've read mention using HBOT, Hyperbaric Oxygen Treatment chambers. They sound like they might help...but the cost is too much for us, thus we've not tried it yet.

Nutrition
For supplements, we've tried Spirulina and have seen remarkable difference within a few days for awareness with a quicker ability to respond. Also, we have not had any problems with his g-button irritating him as long as we keep up the spirulina and his daily dose of cod liver oil.

If I think of anything else, I'll let you know.

Gus and the rest of us

The rest of us.... The kids are doing well in school, each absorbed in the different subjects they are studying. With all of the appointments I have to go to, we don't do much else besides school when I'm around. When I'm gone, they often do pottery, drawing class, guitar practice, read and other fun activities.

Ian enjoys the stretching of higher education. He is being introduced to Algebra, basic Chemistry, and Physics. However, his main love is still reading and sword fighting with George.

George has a growing interest in woodworking. We hope to get some practical lessons soon. As always, his culinary skills are fantastic and improving as he and Ian take over the dinners. He mostly enjoys spending his time reading and making food.

Rose at the grand age of 7, is beginning her apprenticeship in the kitchen but her favorite pastime is still fashion designing. She really enjoys drawing all sorts of fancy dresses for me...some covered in diamonds.

Fergus is learning to grab toys, make choices, and tell us what he wants. He is happier and happier the more we ask what he wants to do.

Molly is learning to not attack everything or everyone. She gladly takes the toys away from Gus and seeks after stray pencils.

waking up

Over the past few weeks, Gus has gone through the process of weaning from his seizure medication. It is as if he has been waking up.
He quickly looks at us, laughs a little bit sooner, and understands what we ask him.
The strength in his neck has increased dramatically and he now loves to roll on the floor.
His ability to sit up is improving and he is moving his legs more, too.
His eating habits have gotten better and he now is starting to drink more.
This past month has been really busy. Lack of sleep and busyness causes me to be more forgetful to pray...but God is so faithful and continues to bless us. As it has before, it feels now that God is graciously restoring more of Gus back to us.

NO MORE SEIZURE MEDICATION!!! YIPPEE!!!!!!!!!!

We're Home!

The trip was long and unfortunately not fun but when we stopped the car in the cool, beautiful mountains of West Virginia, we all felt that every bit of the trip was worth it. We spent that night with our Aunt Betty and then continued the trip the next afternoon. That first week we visited with family out in the D.C. area and then traveled to Duck on the Outer Banks of North Carolina. Swimming in the waves with Grandad and Matt, searching for shells with Aunt Rachel, and having slumber parties every night made that second week refreshing. When we got home, Gus was so happy to be here, he did almost nothing but smile for a couple days.

Since those couple of days, Gus has been really upset, complaining with everything. His medicines are reduced now and so we hope it is a time of adjustment for the medicines instead of something wrong. Today, he has woken up on the right side of the bed and has smiled about everything so hopefully we can look forward to a better week.

walking and walking....

These last couple of weeks have gone fairly well. Gus is extremely relaxed...to the point of doing hardly anything we ask him to do and happily laughing in our face when we ask him to do it. He occasionally pushes on his arms and has no problem with standing.

On Thursday, at Ranken Jordan, his physical therapist put him in the lite gait trainer to have him walk again (he's been walking 40 feet each week). This past time, he continued to walk around the entire gym - 120 feet total. We were so excited. He was bringing up the correct leg at the right time and was almost too fast to keep up with (we were not prepared for how fast he went).

I talked to his doctor and it looks like we'll be dropping one of his medicines when we return from our trip out east. We are so excited to have less drugs.

As I write this, Gus sits on my lap watching the computer. He is easier and easier to entertain. Thank you for your prayers. Please continue to pray that he forms the pathways in the brain to learn all of these things he needs to learn. Also, any prayers for our own sanity with a long car ride coming up (3 kids, 2 babies, and a dog) are coveted. Thanks.

learning new things

Well, things were going great and then Gus got sick again. Half of his face swelled up within just a few hours last week Monday so we took a quick (or not-so-quick) trip to the ER and found out that he had an infection in a lymph node. With some nasty antibiotics and plenty of cold wash cloths, coupled with ibuprofen, the infection went away after about 5 days. During that time, we slowed down our usual mode of activity but Gus is definitely missing it now. He is much happier after he works hard all day even though for now, he screams his way through the activities.



To help him calm down, we put up a swing. He loves it. Since he and Molly take turns being crabby, they also take turns calming down in the swing.
Please pray that Gus learns to be content. We are planning a vacation out east with family and the drive will be long (at least 16 hours).....and Gus still doesn't like the car. We appreciate any prayers regarding Gus' ability to calm down and our understanding of what he needs.

Gus is definitely growing mentally and understanding so many things. He is more and more fun to play with.
thank you, the lockerbys

just a quick note

(Gus kissing Molly)

I just wanted to drop you a quick note to let you know how Gus is doing. Last weekend we had a visit from Gus' Aunt Mary and Grandmom (from Falls Church, Virginia) and we treasured every moment. Mary (who is an exceptional occupational therapist) helped us to understand Gus a lot more, explaining what he was doing and how to work with him better. Since then, we've explained everything to Gus and he has been happier with everything we do. He definitely understands more than we think he does. Thanks to Mary's help, I have been able to address some of Gus' issues with the therapists he has. They will be able to help us more.

On Thursday, Gus had physical therapy and walked in the small gait trainer for a full 40 feet! He needed prompting to pick up the correct knee but after a little while, he was picking it up himself. He was happy the entire time in the gait trainer (which is very unusual---for him to really do anything, he usually has to be upset).

Gus is also asking for more food. He enjoys spoonfuls of liquids to drink and wants more and more food.

Please continue to pray with us for Gus. He needs prayer that his neck gets stronger so that eating and drinking will be easier and once his neck is strong, the rest of his body will be able to get stronger, too.

coffee, coffee, and more coffee

The past two weeks hit us with a fairly bad case of the flu. Everyone except for Deborah, Molly and I took their turn with it...lasting for at least 4 days. I can say we are all officially tired of chicken broth, herbal teas, and smelling tea tree oil throughout the house. Tomorrow we'll spend the whole day airing out the house and disinfecting everything again. Fergus has not been up to any of his normal therapies this past week, so tomorrow, we'll try again. Hopefully, we'll get some good sleep tonight so we can back down on the pots of coffee tomorrow.





(These pictures were just before Gus was sick this last weekend. The hole in the shirt is so that we can get to the g-button even if he has an undershirt on.

He and Molly love being together.

The last of these is blurry because we kept trying to get him when he was so happy about getting the toy...but none came out clear and I wanted to share it with you anyway.)

Please continue to pray that Fergus' legs move more and become stronger. We are working hard with him to move them so that he won't be so bored being stuck in one place. He desperately wants to roll over. Please pray that God would hear his heart's desire to move and play like any other 2 year old. He tries so hard to grab the toys, swing his body over to roll, and laughs so much when he finally does. Please continue to join us in these prayers. Thank you!

just another rainy day

I wanted to let you know that Gus did good again on 'walking' today. It was really hard work for him - he was so tired and who, on a rainy, gray, St. Louis day can blame him? (Our dog, Jack, however, is anything BUT tired. We just got him back the other day - a big THANK YOU to James and Heidi for taking care of him this past year.) Here's a few pictures of us on such a sleepy-ish day.


Gus is doing well this past week. The more we do with him, the more he wants to do. He is learning to play with blocks, picking them up and letting them go (into a loud, noisy tin). He is still eating well, enjoying food. We offer him food every 2 hours and he often eats about 1/4 cup. We'll try to keep him gaining lots of weight so that the dietician will let us give less formula.


The rest of the family is doing well. This week we were visited by a fever but it wasn't too bad, especially since Gus stayed healthy. Thank you for your prayers. Please pray that Gus moves purposefully, with clear control and that he learns to communicate with us (and please pray as well, that we learn to understand him better) to reduce frustration for him.

Up and down

Back and forth. That's what they kept saying to me but the words didn't really hit home. Brain damage recovery is always going back and forth. Some days, one area is better than another. And then other days, nothing is going well. For months he would improve and then do nothing. Hope would soar high and then get shot down, only to rise again later.

(This picture is of Gus in his stander playing with shaving cream and marbles with his occupational therapist here at our home.)

For the past several months, Gus hasn't improved much. I didn't update the blog often because I could think of little or nothing to say that wouldn't be too redundant.

Hope has been hard to maintain. All day, Deborah and I work through a long checklist of therapies to help Gus of which he complains through most. Progress is difficult for us to notice but the therapists keep us going. They tell us he's improved and what to do next step.

God has been gracious. This past week, we've seen Gus do more and more:
On Tuesday, at his speech therapy appointment, meeting also with a dietician, we realized Gus is gaining a little too much weight with all of the extra food he's eating. So we can now give him less formula and more regular food (mostly mashed up).



On Tuesday afternoon, with his appointment with a vision specialist, Gus started to play with a 'light box' (now here at home) and a special box called 'A Little Room'. A Little Room enables kids to explore their world and learn to play on their own. (check it out at http://www.lilliworks.com/products.htm) We were thrilled to have Gus playing more on his own with the light box and A Little Room.

Wednesday, Gus was attentive, supported his muscles really well, and was happy most of the time.

Today, Gus did really well all morning, and did fantastic at his physical therapy appointment this afternoon. Today, they had him in the lite gait again (for walking practice) and he smiled and laughed throughout almost all of the time. He picked up his knees and then put them down again with full weight on each leg. I haven't seen him move his knees that much for the past year.

With this encouragement, our energy is renewed to keep up the work. God is good to us. Thank you for praying.

Please continue to pray for better coordination, complete recovery for the brain, and hope. Thank you!