Neurology appointment

Drew has his first Neurology appointment since we were in the hospital this summer. Hopefully we will get more answers to a lot of questions that were never really answered in the hospital.

Drew is going to be mad that he is going to the doctor and not to school! I am sure he will be a wonderful patient when we go (NOT).

School

Drew loves school. He is in a wonderful preschool program that is inclusive. He has the same teacher that his big brother had. We were able to get a personal care aide for him to help him during the time that he is in school. He is completely in love with her. She is a wonderful woman who is taking care of Drew when he is away from home. He is receiving PT, OT, and speech in school.

I would have loved to put a picture with this post but Drew did not cooperate and refused all pictures!

Sesame Street

We finished off our vacation by stopping at Sesame place in PA. I thought it would be a great time for the boys, it was only alright! It was packed with people and 95 degrees. That was hot for all of us but way to hot for Drew. The first day there was short and the second day we played on the water rides. He enjoyed that part, but then just got to tired, so Grammi and Papa took him back to the hotel. We stayed and Will went on more water rides.

Sesame Place was not the best amusement park. It has more water rides that actual rides, good shows (even though Drew wanted no part in watching them!), and it is a super small park. The restaurants are pretty awful and very expensive. They were out of just about everything each time we tried to order something, like a bottle of water!

Drew likes cookie monster but was scared to get close to him, so next vacation we will just go to the beach or a hotel with a pool!

Vacation

We went to the beach. Drew LOVES the beach and swimming. He really has no fear when it comes to adventure. The harder the waves crashed into him the happier he was. Drew really loves just being on a vacation and staying in hotels with elevators! Will and Drew think it is very exciting to get on a elevator and fight to push the buttons! Go figure :)

The Captain

We had the opportunity to go out on our friend's boat. It was all the boys could talk about. Drew was super excited. Both boys loved their lifejackets. Drew even enjoyed swimming in the river. He did NOT want to get out of the water, even when his big brother told him the sharks would get him! (there are no sharks in the river or anywhere around us!). Drew responded, "I love sharks".

New Diagnosis

We were only supposed to be in the hospital for 3 days to determine if Drew has seizures or not, but we ended up staying 5 days! It was a long 5 days for us but I believe even longer for poor Drew. He hated the wires attached to his head and just being stuck in the hospital room. What kid would tolerate that well? We left the hospital with a diagnosis of sorts. He is having seizures but for now they are only present when he becomes tired and or sleeping. At the moment they are not interfering with his daily activities. He is not going to have to take anymore meds but he will be monitored. The Doctors did fine a cyst on his right temporal lobe. I asked what that means and their response was it could of formed in utero and does not appear to be the cause of his seizures and is not complicating his brain and it's functioning. Again we just watch it with a yearly MRI and hope it never becomes anything more. We have a follow up appointment with his Neurologist in October and hopefully she will give us more answers than the hospital doctors.

Drew's attitude remained the same in the hospital and out, NAUGHTY! But that's Drew and thats how we know he is feeling ok. He always keeps us busy.

MRI

Today we take Drew for an MRI at Children's Hospital. The Doctors are looking for any abnormalities or seizure activity. He will be sedated and that is where the problems lie. Drew's condition has the staff very concerned. We have received a lot of phone calls throughout yesterday and today. The doctors say no meds before the procedure, now this morning and another phone call, he has to have his meds. I know that this hospital does not see HLHS kids very often, but I hope everyone can get on the same page before this procedure!

Drew is not going to be happy, so we will have to get him something or take him for ice cream after.