Thank you

Thank you to everyone who has expressed their sympathy for the loss of our beautiful baby boy.

The words of so many are comforting and the memories shared by others bring a smile to my face.

Drew's wake and funeral had so many people attend and Brian and I thank you for coming. It meant a lot to us to see how many people went out of their way to come and say goodbye.

Drew's funeral was in every way beautiful and heart warming, just like Drew. If you did not come to the cemetery I will explain the beautiful experience.

As we headed down the long road towards the cemetery, we passed our other son's school, the students, teachers, and principal all stood outside and made the sign of the cross as Drew passed by them.

It was a sight to be seen. Drew would of loved it. The innocence of a child was truly expressed in that single moment.

As we headed toward Drew's final resting spot, the sun slowly started to come out and the rain stopped. As we said our final goodbye to our baby the sun shined so brightly it was blinding. It was as if the clouds opened up and in one spot the stream of beautiful sunlight shined down.

I will believe in my heart that Drew was giving us a sign. The sign that he is happy.

We will always miss Drew and the joy he brought to each of our lives. Drew gave everyone a reminder to live your life completely and to love unconditionally.

I love you Drew, Love Mommy

April 23, 2007-November 26, 2010

This is a post I never wanted to write. Our baby boy passed away on Friday, November 26th at 5:25pm. He suffered a massive stroke and cardiac arrest that he could not fight back from. He tried so hard though. God needed a feisty little blond angel with a devious smile and bounds of energy to help him in heaven. I know he is wearing his buzz lightyear wings now. Drew was surrounded by his family and all the love you could imagine.

We love you to the moon and stars and back again and to infinity and beyond!

Drew Drew, "I lub you and adore you forever" Mommy and Daddy

Seizures or Heart Issues?

Drew has been having small episodes where he "faints". He turns very pale, becomes tired and for lack of a better medical word, passes out.

He had 2 episodes last week and now another one this morning. We called Dr. Orie and got him in right away to be seen. He had an EKG, and echo. Both came back fine. Right now it does not look like it is heart related but my gut feeling tells me it is.

He had an EEG yesterday because of the other episodes. I have tried to get a hold of Neurology and of course they are not quick to call you back or even give you guidance about what could be going on. Our wonderful pediatrician, Dr. Kanaley has tried to expedite the process by getting in touch and letting the Neuro Doctors know what the latest development has been. I hope we get answers soon. 3 maybe more episodes and no one but Dr. Kanaley and us seem to think this is a big problem.

I may have to call Strong hospital's Pediatric Neuro department and get a second opinion. I need to feel confident that we are going to get to the bottom of this.

Halloween

Buzz lightyear and cowboy Woody to the rescue!

The boys have talked about Halloween since September. Drew has been firm that he wanted to be Buzz. He would only be the Buzz that had light up wings and was a "real buzz". Of course this meant that the costume he had to have was the most expensive. He truly is just like his Mom!

Apple farm

We went to the apple farm and had a great time. The boys love going each fall. They ride the train to the apple orchard and pick their apples. Drew eats at least 3-4 apples from the trees. He thinks he is so cool picking his own apples and putting them in his own bag. We came home with 4 large bags of apples and lots of apple cider, the boys favorite fall beverage!

Heart Walk

We participated in the American heart walk. We walked with Grammi and Papa as well as our new HLHS friends. it was amazing to find and meet all the CHD families that participated in the walk. My mended Little hearts friend and HLHS mom, Sibbohan (Mom to Joseph) put together a booth for us to hand out MLH information to parents. It was wonderful to meet the families. We actually met 4 families of boys with HLHS.

William and Joseph are the same age and hit it off right away. Drew joined in of course. Joseph and Drew wore their survivor shirts and red hats. It was sweet and also a reminder that both boys are miracles and prayers answered!

Neurology update

Well the Doctor said everything looks good with Drew and we will just continue to watch him.

I guess we will continue to monitor him.

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.

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.

update

Wow it has been so long since I last posted any info about Drew. I guess that is a good thing that we have not had any major news to report. He is doing well. He continues to have the purple/blue hands, lips and feet during the winter. We can't wait for Spring and then this is not as often.
We have started to realize that he wants to do everything that everyone else does now, but this is not realistic for him. He tries very hard to keep up with the other kids ( his brother especially) but he gets blue easy and winded. This is difficult for him but more difficult for us as his parents. This Summer is going to be very hard to keep him less active. We will talk to Dr. Orie about this at our next appointment.