This coming week is perhaps the busiest we have ever had. When you are a special needs parent your schedule and time are not your own. They are instead occupied by whatever your child needs.
The Lost and Tired family is no stranger to this.
Having said that, we will be pushed this week, much farther than we have in the past.
Beginning Monday, Emmett and I will drop Gavin and Lizze off at Akron Children’s Hospital for a period of 48 hours. During this time, Gavin will undergo a VEEG to determine just how bad his seizures are. This is important for obvious reasons.
During this time, I will be home with Emmett. Elliott will be at Lizze’s parents house. They will take Elliott to school and Emmett and I will pick him up. They will then swing by after work and pick him back up. We will do this thru Wednesday. Lots of fun.
Emmett and I will pick Lizze and Gavin up sometime Wednesday and bring them home. This of course, assumes that nothing goes wrong and requires us to adjust our plans once again.
However, the homecoming will be short loved because Thursday morning we will have Gavin back at Akron Children’s Hospital. This time he will be at the geneticist and undergo a chromosomal micro array. Basically, that is an extremely through genetic test that looks for over 1800 different genetic disorders. Emmett just had this done a few days ago. We won’t get the results back for a very long time.
However, if we’re lucky, we just might find the answers we are so desperately looking for.
Friday, we will have Gavin to the Cleveland Clinic for his Dysautonomia consult. I mentioned awhile back that Gavin‘s pediatrician thinks he might have something called Dysautonomia. Basically, Dysautonomia is a blanket term for the autonomic nervous system not functioning properly.
In Gavin‘s case, he can’t regulate his body temperature very well. That is why he is always so over dressed, regardless of how hot it is. That’s could also be why he doesn’t sweat.
He also can’t regulate his blood pressure very well either. When he eats, the moment any food hits his stomach, all the blood vessels in his intestines dilate and cause his blood pressure to crash. This is why he goes to sleep after eating.
I have no idea how long we will be there or how many times we will have to come back.
Aside from the time involved in this week, which is extensive, we are going to go through a crapload of gas in the van. This would be a great example of why special needs families often struggle financially. At anytime, we can be faced with unexpected expenses that throw our delicate balance off and causing a domino effect that takes a great deal of time to recover from.
It’s just one of those things that we’ll have to just figure out.
My goal is to physically make it to everything and survive the challenges this week is going to present. I hope and pray that we will find some answers that we need so that we can finally end the search and begin to help Gavin.
Please keep us in your thoughts and prayers. I fear we’re gonna need them this week.
Posted from WordPress for Android so please forgive any typos as auto-correct and I don’t see eye to eye. 🙂