I've been quite anxious lately. Gavin is still having seizures. They increased his anti-seizure meds again this week. Hopefully this will work. They also told us that his EEG showed that he is having seizures often. This means that we don't even see most of the seizures he is having. If he is in a contant state of seizures, it's no wonder he isn't progressing developmentally! Please pray that the meds work or they find out what will. I read something today that could be helpful. I plan on sharing it with the neurologist.

I've also been anxious because Caleb and I have had a head and chest cold. No big deal for us, but if Gavin gets it.....! Please pray that he stays healthy! When we left the hospital last month a couple of staff said that they would "see us next month!" They were just joking with us, but this has been Gavin's track record! So, it's been over a month and I feel like I'm sitting on a time bomb, waiting for Gavin to explode with some illness and send us back to the hospital! This is no way to live! I hate feeling anxious! Thankfully I read something else today that has helped to change my outlook. It said: "Start living life for the moment, not worrying about what tomorrow holds." I knew this of course, but it was a great reminder for me! I actually felt like I could breathe a little deeper after the reminder! I find myself looking too far ahead some days. When I do this I usually come up with a much dimmer future than what God has in store for me. So, again I'm reminded to take one day at a time and to try to see the positives in that day. When I do this I always find many more things to smile about than to worry about! Like, for example, Caleb's deep and infectious laugh, or Gavin's cute and chubby thighs, or Nolan's willingness to play with and teach Caleb(even though Caleb is so bossy!), and finally, Jacob's sweet smile and "Love You!" that he tells me several times a day! So, today I'm thankful for another reminder and a chance to enjoy TODAY, instead of worrying about tomorrow!

Thanks for your continued prayers! We are thankful for you too!

Love, Alicia and Family

I just wanted to extend an invite to whoever wants to come to Gavin's baptism. He will be baptized during the evening service (5:00 P.M.), Sunday, August 5 at Bethany United Reformed Church. I forgot to put this in the last update.

Gavin is doing well. He's still having seizures, but now on a new medicine which should help to control them.

Have a great weekend! Thanks for your continued prayers and support!

Love, Alicia and Family

God's Blessings

It has been kind of a sad week for me. Gavin started having seizures again last week. The neurologist had taken him down on the amount of anti-seizure medicine he was taking, so hopefully this is what is causing them. He was hoping to get Gavin off the med, but it looks like he still needs it. Gavin's EEG is Friday, so hopefully it will tell us more. It is so hard to watch him have the seizures! It looks like he is startled and flails his arms out. He also cries a little with them. I don't know if it hurts or if there is another reason why he cries. He usually has them after waking from sleep. Please pray that these can stop! If he does continue to need to be on the anti-seizure meds he will need to be changed to a different kind. His doctor says that what he's on now isn't good for long term.

On a lighter note, Gavin started 'school' last week. A PT comes to our house for about an hour to work with him. She also gives us ideas to help Gavin to progress developmentally. A lot of the stuff I've already been doing with him, but she did have a few great ideas and insight for us!

Gavin has a big weekend coming up! He is going to be baptized on Sunday! He is finally doing well enough and out of the hospital! We are happy about this! We'll have to see how well he tolerates it. He HATES his bath and getting his head wet!

I've posted a few more pictures on the carepage site. The boys have begun running when they see me with the camera! At least Gavin can't get away yet! Although, I would love it if he could! It's funny how things are. Jacob was reminding me about my response to Caleb's first steps. I guess I said, "Oh No! I don't want him to grow up this fast!" Now I would give anything to have Gavin crawling or walking! Be careful what you ask for! I used to say, "I wish they would stay like this forever!" Now I'm wanting Gavin to move along! Oh well!

Thanks for your continued prayers and support!

Love, Alicia and Family

I just wanted to clarify something in response to one of the comments posted. The neurologist doesn't believe that Gavin may have had damage to his brain due to the seizures. The seizures were probably a result of damage done to Gavin's body when he was so dehydrated and sick back in April. Sometimes seizures come about when your brain has had damage done to it. This is most likely the case with Gavin. This does not mean that the 'damage' will be permanent, but when they did a CAT scan they did see white areas on the brain, which shows something to be abnormal on the brain. This could be from the extreme dehydration he suffered from or it could be from being put on heart bypass several times during surgery. In either case, he could recover from this, or not.

I'm sorry to those who might get offended by the term brain damage! I definately don't mean to offend anyone! But, that is what it is.....damage to the brain. It does not offend me at all. Maybe that is because of my schooling as a nurse. It's just a medical term. As for our neurologist, we think he's doing a good job and we very much appreciate his honesty with us! I like ALL the facts! No surprises for me please! Just ask my mom! She threw me a couple of surprise parties in the past and I hated being surprised! I did appreciate the effort though, Mom! :) Anyway, I tell most of Gavin's doctors to tell it like it is! In fact I almost switched cardiologists because he was a "cup half full" kind of doctor and didn't share all of his thoughts about Gavin's situation because of it. That was his explaination to me. I like to be prepared as well as I can be and if that means the doctor says something to me that doesn't sound good, I don't care! I appreciate the honesty! I also know that what they say may not be the case in the future with Gavin. Gavin has surprised so many doctors with the progress he has made! I also know that doctors are human and make mistakes, plus our bodies are very complex! What an Awesome God we have!!! One more thing I know is that God is Gavin's true physician and He alone is taking care of Gavin and all of us! We are very blessed that God gives health professionals these gifts to be able to treat our awesome bodies! I am thankful to all that have been able to get Gavin to as far as he has come! Wow! Did I ramble, or what?! Anyway, just wanted to clarify a couple things!

Also, Gavin is still having issues with gagging. Some days aren't bad at all and other days are. We are so thankful for the good days!

Thanks for your comments, prayers and support! God has blessed us with you! Look for new pictures on the carepage site!

Love Alicia and Family