Just wanted to give you a quick update...
Last week was a really long week. We drove to Irving 3 times and Dallas twice. All between 45 min and an hour away. It seemed like we never got out of the car. We are slowing getting some bloodwork back from Cincinnati. What has come back looks like it is pointing to a Mitochondrial or metabolic disorder. We are still waiting for some other stuff and then hopefully we'll get a chance to speak to the neurologist. We don't have a followup date set yet. The bloodwork most likely will not give us a firm diagnosis (there is a slim chance). Which means we will be headed for the muscle biopsy. We also had Alex's echocardiogram done this week, but results won't be back till Tuesday.
The majority of our week was spent with the therapist trying to decide what to do about a stroller. As most of you know Alex has a hard time with endurance and exercise. I still carry him EVERYWHERE! Alex is great about riding in his stroller, but he is outgrowing his "baby" stroller. We looked at many options and finally settled on one we are happy with. Now it is a matter of trying to get it through insurance before the end of the year. If it gets through claims it will be covered 100%. If it goes over into January we will have to pay for the majority of it to meet our deductible. It will all even out in the end, but it will feel much better to get it for "free"! Our therapist, Elizabeth, is awesome. Alex loves her (as do I) and she took so much time this week to help us muddle through all of the craziness of deciding on what to do and get the paperwork rolling.
The only other thing going on is Alex is having trouble with his belly. Since changing the tube, he has started to have excess tissue around his tube called granulation tissue. It is really painful and there is some discussion of whether it is infected. He has been on medicine since Tuesday, but it is not getting much better, so it looks like we are headed back to see Dr. B tomorrow. We think part of the problem is that Alex's tube is too big. You are only supposed to be able to fit a dime between his button and his skin. He has about 1/2" to an inch of room. It moves and is rubbing. So we have to talk to Cincinnati tomorrow about getting a different size.
On a positive note, it was so nice to see our friends this week. We went with playgroup to see a model train display. Alex loves his friends and he was so happy to play with them. Mommy was just as happy to have a chance to talk to her friends! Our playgroup has been so incredible from the beginning. They have really experienced this whole crazy 3 years with us and are always willing to help in whatever way they can. The girls see Alex just like I do- Just Alex with a smile on his face, not a sick little boy who spends more time at Dr's appts then any 3 year old should have to. Girls- you will never know how thankful I am for that.
To all of you- Thank you for being on this crazy journey with us. You are there when I need a shoulder to cry on. You are there when I need to complain. You are there when I need to laugh about the craziness of my life. For that I am forever grateful.
PS-Okay not such a "quick" update!