better and better

Gus is continuing to do better. He makes lots of progress and then seems to plateau for awhile, which I'm told is common with brain injuries. This past week, we had an extra busy schedule. On top of the usual therapies, Gus had a 'swallow study' done and saw an eye doctor. Both visits were very encouraging. The swallow study, done with a radiologist, showed that his muscles for swallowing are all functional - just weak. We simply need to get them stronger. We've started to work on feeding him more often every day. It takes a lot of his energy and he doesn't do much else after that but sleep. Once he is stronger with swallowing, we'll work on liquids so that we can finally get rid of the G-button!!

The eye doctor as well had good news. He was checking to see if damage was done to the optical nerve during the swelling, but God protected it - there was no damage done to his eyes from the accident. The visual problems are all related to the brain injury. The next step for helping his vision is to take him to Delta Gamma, vision specialists. They can tell us if he sees double, just shadow, only up high, certain colors and not others, and so on. Our appointment with them is on the 13th of November. They will help us with strategies to improve his vision.

This past week, Gus is suddenly very limp (the drugs he is on relaxes the muscles and as he improves, they relax more and more). He isn't too crabby but he won't even roll over like he was. Please pray that the doctors realize the improvement made and will reduce his medications accordingly. They want to go slower with reducing medications but every time Gus has less medication, he does new things - it is always an improvement. If we need to wait to reduce them, please pray for patience on our part.

The kids all say hi to you. They love Gus and he adores them. They can always make him smile.

Thank you for your support. Without it, we would fall apart. Your prayers keep us going, keep our hope alive. Your comments mean a lot to us, even if I can't read them often, I treasure them when I do.

with hope and thanksgiving to God who hears our requests, esther

Gus is doing well. The latest news, this past week is his great progress.
Physically, Gus is doing more and more on his own. He is rolling over when he wants to (from his belly to his back) and learning to play more with toys. He is making more of an effort to hit the toys and activate them and enjoys the noise he makes.

His overall muscle tone is improved, more and more like a normal baby (which means he isn't too stiff or too relaxed). He is strong but we are working at home on exercises that encourage more movement (rolling more and crawling).

Swallowing is still difficult but getting better. The front of his mouth responds quickly (and he loves the taste of the food) but the back of his mouth still gags often.

Mentally, Gus is definitely doing better. He is understanding more of what is happening around him. He is smiling and laughing more and more in response to us just talking to him or picking him up. He is very attentive to whether or not we are around and instantly calms down if we just talk to him.
Medications are being lowered again this week. The doctor was very impressed with the work Fergus is doing (it is obviously him, not the medications doing the work) so he is dropping them lower and lower. We are thrilled. The hope in knowing that our son is doing so well, despite all of the odds predicted against him has given us wings this week.

Thank you for continuing to love us through your prayers and support, esther

more hope

Since Gus has come home, we've been fortunate to be 'adopted' by his nurse from Ranken Jordan, Patty. Patty and her husband, Pat, have invited us to their home and shared with us the pleasure of their garden. We have had so much fun working in their garden and visiting with them, besides the incredibly yummy food, that I wanted to share with you a few pictures.



Last weekend we made the 4 hour trip down to our old home in Alton, Missouri. Car sick on the way in...and on the way out. As usual, Gus hated the car ride and screamed in protest the entire way (he screams every time we take him in the car). We had a great time visiting with family and Gus adjusted a little to being in a new place with people he doesn't really know.
(He's a little tired here and in the middle of smiling...but wouldn't give us the whole one for the picture.)

Monday, we visited with the Fiorinos, really good friends living in Thayer (about 30 minutes away from Alton). Dr. Joe Fiorino is the chiropractor who has seen Gus before and each time, Gus is so much happier. He was able to check him out and adjust him (several times) on Monday. I cried with the result. Gus moved in ways he hasn't since before the accident. He was calm, happy, and content without us constantly entertaining him. The whole ride home that night was quiet - he was peaceful all the way. This past week, the difference has continued. He got his fussiness back again but he has continued to move more. The strength in his neck and torso suddenly increased dramatically. We are working on finding a chiropractor to take him to in the area (with Dr. Fiorino's help).

Other exciting news - we are expecting another addition to our family. I'm due to have a baby in early March 2010. The kids are very excited.

Thank you for your prayers. Please continue to pray for Gus' full recovery. We are praying right now for the right chiropractor in the area. We also are praying for a quick return of Gus' ability to move around more. He is frustrated at not being able to move much on his own. His vision is increasingly better - looking at everything up on the walls (not just a foot away from him).

God is good - He is restoring and increasing faith, hope, and love through your prayers. Thank you, esther

play time

(This was the best smile picture we could get for you...but we'll keep trying!)

Gus is smiling more and more now, at least a few times a day. Last Sunday he started to laugh and that's getting more and more frequent as well. Thank you so much for praying for us. It is so encouraging to see him enjoy playing with us.

His medications are being reduced some more since he is doing so well on less and less. He is also swallowing a little bit faster and he acts like he wants the food when he smells it cooking and we are at the table eating a meal.

His vision seems to be improving but I'll be contacting an organization here that can help us figure out what he can see (shadows, black-white, double vision, etc).

He is exhausting as he 'wakes up' (mentally and physically) so Deborah, Matt, and I often take turns playing with him, stretching him, and stimulating him with different things. Please pray that his brain continues to heal and that God graciously shows us the next step and how to keep going.

gratefully, esther

update at last

It's so nice to be able to write to you again. We are finally getting some sleep (just since this past weekend Gus started to sleep through the night - some of the nights) and we feel sane again. It's amazing how 6 straight hours of sleep can make you feel normal.

I'll do my best to sum up all of the things going on with Gus. Since coming home, Gus has been adjusting to all of us, our noise (or lack of), and the new environment. The first few weeks were rough. After that, he's relaxed a lot. In fact, he relaxed too much. Matt and I were worried because he was limp almost all of the time. I spoke to the doctor overseeing his therapy drugs and he reduced the amount of Baclofen 25% last week. [Baclofen is an antispasticity drug that they used for Gus because of his inability to control the over-reactions of his muscles. It apparently does not affect cognitive development but does over-relax the muscles. Taking him off of this is a huge step forward.] The past few days was similar to watching Gus come off of morphine except that instead of his mind waking up, it was his body. He started to move more, sleep better, and tolerate new things even better. He started to swallow easier as well (we are now giving him very small tastes of applesauce each time he is hungry and he wants more and more).

Last week, Gus also received shots of Botox in his arms to relax them. Already, we are able to completely straighten them and do even more therapy with him.

The greatest thing for me was last night: I came inside the house and sat down beside him while he was looking at his Aunt Deborah. I said hi and he smiled. I didn't believe what I saw so I said it again and he smiled again at me! Not a half smile but the exact same smile he always had - big and happy. This is the first smile in response to anything. He's only smiled in his sleep so far (and then it was only a half-smile). I cried a lot after that. I felt as though God was truly giving my son back to me. Ah, that God is so good to us yet who are we but as dust? His love is amazing.

Thank you for remembering us, esther