Friday, June 6, 2008
A Day In The Life Of Gavin (Part I)
Playing with my toys, Doing Physical Therapy, Snuggle time with Mom
Practicing head lifts, Playing with Big Brother Jake, Hangin' with Dad and Brothers
People have been asking me how Gavin is doing and progressing, so I thought that I would give a thorough update on a day in the life of Gavin.
Gavin has been making little strides developmentally, but he's still at around the 2 month level of a baby. Obviously, this is way behind considering he's 20 months old. This is hard for us, but when we consider how much he's been through and having had a severe stroke, we are pleased that he is able to do anything at all! He has been giving us more smiles, which is SO great to see! They are usually just little shy smiles, but the cutest I've ever seen! He has been more alert and trying to relate with us a little more. He's been vocalizing with us a lot, mostly just cooing sounds, but when he cries he sounds like he is saying "Maa...Maa..." He knows who to call! :) He is attempting to sit up a little and is gaining slight head control. We work on this a lot! That's about it developmentally.
As for his heart, he still has a significant leak in his Mitral valve, but his body is tolerating it well. This is such a blessing! A year ago, they thought that they would have to replace his valve soon, which would not have been a good thing at such a young age, so we are very happy that his heart is holding out for now. He is only going to see the cardiologist every 6 months now, so they must be confident that he is doing well cardiac wise! Either that, or they got tired of seeing us so often?! :)
Neurologically, he is obviously not where he should be, due to the stroke, but he is doing better. We had a visit this week to his neurologist's office and they asked if I wanted to know the results of his last EEG. I said, "Of course, although, I know it's probably not normal." Guess what I was told?! It's essentially NORMAL! He showed NO signs of spikes on the EEG, which means that there is NO seizure activity going on! YAY!!! There were some slower brain waves indicated, but they attributed this to the Phenobarb medicine that he was still on at the time. So, this was great news to hear! They want to start weaning him from another seizure med that he is on and hopefully this will go well. If he does well and does not begin having seizures again he will be on only 1 seizure med, compared to 3! They were a little concerned with his weight. He has not gained any weight in months and has actually lost a little. So, for that reason and others, they are refering him to a doctor that specializes in special needs children. I am VERY relieved about this! This doctor will be able to know what his needs are better and will be able to help me work with his other doctors more efficiently. Up until now, I've had to make sure that they are all working well together and that they are doing everything that they should be. This has not been easy with all the doctors that Gavin has, plus I don't know everything, so I'm sure things are being missed. I think this will be very helpful!
As for medications that Gavin is on.....He is only on 7 at this time. Sounds like a lot, but he had been on around 12+, so things are getting a little easier in this department. I only need to make up 10 syringes each day now. This does not include the breathing treatment medications he gets 3 times per day via the nebulizer. The pulmonologist has not decreased these. He said as long as Gavin is staying healthy and out of the hospital, we shouldn't "mess with a good thing." I totally agree!
Gavin continues to get physical therapy 1 time a week, although less frequently during the summer months. But, Joel and I work with him too. Sometimes I wonder if it does any good, but we keep at it, hoping for some progress.
So, now you know how Gavin is doing. I know it's hard for people to really know, since we haven't brought him out much. Life is definately getting easier, but we have a long way to go. Please continue to pray that Gavin will make significant progress in the years to come and that we continue to be at peace with whatever God has planned for him and us. We feel very blessed to have Gavin in our lives and know that God has a great purpose in whatever the future holds.
"Therefore, having been justified by faith, we have peace with God through our Lord Jesus Christ." Romans 5:1