The Merry Go Round

Since Jack's hospital stay in August we have been riding a Merry Go Round, up and down and around and around. Every day brings new highs and lows as we push forward for answers on how to help him. I've been reluctant to post because this is so emotional and I don't want anyone to view him differently due to his current symptoms. There is such a fine line between sharing information to those who care and protecting your child from judgement. With that being said, we will give an overview of where we are at in his story right now.

Jack will be admitted into Boston Children's Hospital on January 14th, on Morgan's first birthday! We are still waiting on his final schedule to roll out but he will be there a week or two. The clinic up in Boston is a Brain Malformations clinic with a team of doctors who specialize in everything from neurology to genetics. At this point Jack has two separate brain malformations, periventricular leukomalacia and mesial sclerosis, so this is a good starting point for us. We have gotten all of his medical records to them so there shouldn't be too much repeating of testing. We hope that the team up there can figure out if he does indeed have an underlying metabolic issue. And if he does not, they can explore what their opinions are as far as brain surgery. The belief that he has a metabolic issue comes from his pancreatic insufficiency and that his blood work is not normal. His blood work has several highs and lows in addition to several slightly askew numbers for anything from fatal metabolic disorders to levels of iron. Our Dr's here at this point give us a friendly wave and say "let us know what they say in Boston". They all readily admit that he is sick, they just don't know how to help him.

So, in the meantime we wait and hold our breath and thank God for another day. Jack is still having seizures, which could take him from us any day. He is struggling against his own body and is increasingly tired and grumpy. It is amazing how strong kids are and how they just "go" because it is in their hearts and souls to have fun and love. We are pretty good at keeping it normal on the outside and letting him crash behind closed doors. Now, if you ever saw us in and out of school or church you may not think this was true. We are praying for a smooth holiday season and 4th birthday for Jack. And as always, we appreciate all of your love, prayers and support more than we could ever express in words or actions. Please keep Jack in your prayers as he has a long way to go, keep praying for answers to come and smiles and laughs to never end.

                             Playing in the dirt is fun!