Tuesday is a very busy day for us. The kids are back in school and we are back to the Cleveland Clinic with Gavin. Gavin will see the movement disorder specialist Tuesday afternoon. We have been waiting for this appointment since last summer when these problems began. As you may remember Gavin spent a lost of time in the Cleveland Clinic Pediatric Hospital and Akron Children’s Hospital. He can not have his medications changed in any way until we get into to see this specialist. Needless to say Gavin has been struggling since. He needs his medications almost constantly tweaked because of the way his body metabolizes medications. Life has not been easy for anyone, including Gavin.
Hopefully we will get some answers that result in us being able to medicate him again. We will also find out if he needs a spinal tap Tuesday as well. That’s actually a pretty big deal and we have been nervously awaiting this appointment for that reason also.
Lizze has an appointment in the morning and another one on Tuesday. At some point we have to get the van back in to the shop AGAIN. We also have to get pre-school set up for Emmett now that we are through with Akron for right now. Hopefully we can get him right back in. We also need to set up his OT,PT,speech and language therapies also. That ,eams we will be driving back and forth to Akron several times a week.
Here is what our weekdays look like:
7:30 am Elliott to school
8:00 am Gavin to school
12pm Emmett to school
2:15 pm Pick up Elliott
2:30 pm Pick up Emmett
3:00 pm pick up Gavin
Now this does not include Therapy for Elliott. Therapy for Gavin. Speech, language, OT, and PT for Emmett at Akron Children’s Hospital every week and other early intervention therapies. Lizze and I also have the Triple P Parenting at Akron Children’s Hospital as well. Gavin also needs to get back into speech, OT and PT as well ASAP. Gavin will also be back to almost weekly blood work if and when we can adjust his medications again. This does not include appointments to any one of Lizze’s almost dozen doctor’s either. There are more but you get the point…….
All of this begins in the morning and I don’t have the slightest idea how we are going to pull this off. Lizze also has her surgery on the 20th which will have her down for weeks at the very least. I have no idea how we are going to survive this….. But survive we must…