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.

Drew is 3

Our Drew is 3! Yeah! We jump for joy that he has successfully made it another year. He has shown the Doctors and all of us that he is strong, stubborn, and our little miracle man. He had a wonderful birthday. His Papa, Grammi, Mommy, and big brother Will took him to lunch, then ice cream and finally the playground for some fun. We ordered chinese food (Drew LOVES chinese noodles!) for dinner for him and then just played outside the rest of the night.

He had his birthday party that weekend. We went to the same wonderful place we have been going. It was a Blues Clues birthday party. He is obsessed with Blues Clues and his notebooks. He had such a great time with all of his friends and family. He tried to get the notebook off of his cake before the party began. The notebook was made out of frosting so he just left some marks on his cake trying to get it off to use it, true Drew style! He had two huge pieces. It was a wonderful day and one that we are all thankful to God that we have been able to celebrate for the last 3 years. Each day that Drew is active, full of love, and of course naughty, we cherish for we do not know what Drew's future holds so we just enjoy the present.

Finding Answers

We have spoken to his cardiologist here in Buffalo and we have seen a pediatric neurologist. Both Doctors are in agreement that Drew had a seizure. The neurologist wants Drew to have a sedated MRI and then be admitted into the hospital for 3 days to be observed. We have the MRI on June 10th here at Children's Hospital. We will be admitted to the hospital on July 19, 20, and 21st. Drew will have a 3 day EEG and video monitored for seizures.

For everyone that knows our Drew, you know that video footage will definitely be some show! He will not be a well behaved patient.

Now we just wait and see what the results will be.

Big Scare

On Monday night, Drew had a bad episode. He was waiting for his coat to go on a walk, his eyes rolled back and he quickly became unresponsive. He was lifeless and blue around the mouth. It was a scary situation. I called 911, my Dad stayed with Drew to check on his breathing ( it was very shallow and difficult to even tell if he was breathing) and Brian ran to get our neighbor who is an EMT. Our neighbor Mike quickly came and began rescue breaths until the ambulance arrived. Drew was rushed to our hospital where he was stabilized and then transported to our Children's Hospital. We spend some time in the ER, then we were admitted. After extensive tests it was determined that Drew did not have a seizure, just a severe drop in blood pressure which resulted in his heart slowing down. As of right now we have no idea what caused it, and if it will happen again. Drew has proven again that he is a fighter. He is now back to himself and it is his family that is trying to return back to normal after this horrible scare! We will have a follow up appointment on Tuesday with his Cardiologist. I hope we can find out more answers.

Rubber Ducks

Last Saturday, I noticed that Leo from the Little Einsteins was floating in the toilet. When I asked the boys why Leo was in the toilet, Drew replied "he's thwimming" (swimming). I knew there was probably more things swimming in the toilet and it had to be investigated. I could not flush the toilet so I called Brian and he came home from work. He had to take apart the toilet and sure enough there was a yellow rubber duck! Then he put the toilet back together and it still would not flush. He took the toilet apart again and this time found a blue rubber duck! William had no problem blowing his little brother in. He said Drew put the ducks in the toilet. We asked Drew if he put the duckies in the toilet and he replied "yup". After a quick assessment of all the bath toys, we feel confident that we have retrieved everything from the toilet. Drew never makes things dull.