First Day

Alexis successfully completed her first day of Kindergarten. She was so excited to go this morning that she was up and dressed by 7:30am. If you know my daughter at all, or any Parke for that matter, it is a big deal to wake up early. Yesterday we went to the store to get something special for breakfast (I hate to admit it but I got her a doughnut). I was worried she would need motivation to get out of bed on time...evidently not. She went into the kitchen to get it (because I was still in bed) and I heard her start crying. I turned to my husband and said "how much do you want to bet she got chocolate on her new shirt!" Well, I was unfortunately right. She dropped her doughnut down the front of her shirt. Thankfully this did not set the tone for the rest of the day. I gave her a few alternative shirt options and she reluctantly picked one. She was still VERY cute on her first day. 

Here are some supper cute pictures of her from this morning. Yes, I was one of those mothers that followed her child into the school with camera in hand. I tried to get a shot of her walking down the hall but right as I took the picture she ran into another kid!!! Silly kid, sometimes she doesn't watch what she is doing!

Although my "keep busy" list keeps growing, I didn't do any of it today. Instead I came home from dropping her off and took a little nap. Then I went to my friends house to enjoy some girl time with amazing ladies! It is defanitely what I needed. When I sit down in the house I start to really get upset. With Alex starting kindergarten it is even more difficult. The plan I had all maped out was that I would be at home taking care of Drew and one of my close friend's baby. That plan didn't work out...now I need to come up with another one. The only problem is, the new plans all kind of suck!

One last note before I conclude for today. To all my followers who have children; healthy, beautiful children. Just take a second and really ponder what matters in life. Drew's passing has really opened my eyes to what truely matters. I was at the grocery store yesturday and overheard a dad yelling at his son because he was trying to ask for name brand cereal. I had to do everything in my power not to cry. It's just cereal people!! Please give your children a hug and kiss, tell them how much you love them and never let material things of this world get in the way of showing them how much you care. There might be a time when you can't tell them that anymore.

Services

Drew's memorial services were absolutely beautiful. There were white floral arrangements primarily with lilies and orchids which brought a sweet smell to the chapel. Many friends and family members came to calling hours which was followed by the funeral service. I had some very difficult moments throughout the day. One that I can recall that was incredibly difficult was when my brother, my step-dad, my grandfather and my brother-in-law picked up Drew's casket and carried it slowly down the hall from the viewing into the chapel. I couldn't control my sobbing. My husband gave the most amazing elegy, describing perfectly our son and our life during his time with us. I'm not sure how he made it through the talk. Probably by not looking directly at me. He did once and almost lost his composure. His talk was simply amazing!

It truly makes me grateful in situations like these for family. Robert's family came across the country to support him. It was the first time in over ten years that all ten (yes I said 10!!) brothers and sisters were together in the same place. We were able to get a beautiful picture of all of them. It was so funny to watch as they lined up, oldest to youngest. Alexis had more attention than I think she could even handle!! 

Now I sit at home in quiet. Alexis starts kindergarten tomorrow! Although I am so excited for her, I am dreading it. I have made a list of things to do while I am home by myself during the day. I just don't really know where to start. I think the first thing I am going to do is sit down and write everything down. I want Alexis to be able to really understand what happened...every painful detail. I have always believed that the more knowledge you have, the better. 

Thanks again to everyone who was able to support our family through this difficult time...and who are continuing to do so.

Friends and Family

I would have to report that I am truly grateful for the love and support we have received and are continuing to receive from our close friends and family. Every time I sit down and it is quiet in my house it breaks my heart. Having family around us and keeping us busy helps to ease the pain. I know that the funeral will be very difficult but having loved ones there to support us will be a blessing.

It absolutely amazes me that one little boy who only lived on this earth for three months has touched the lives of so many people. I feel so privileged to be his mother. I am sure when I meet him again I will gain a full understanding of how amazing his spirit is. I love you Drew Kai. I miss you!

His Time

At 9:30am Friday morning, the doctors took Drew off the ventilator. He was wide awake and wanted the breathing tube out...all very good signs. As I reported in previous posts, his body seemed to be responding to treatment. Less than an hour after he was pulled from the ventilator, Drew began to breath in a difficult pattern, the same that sent him to the ventilator 2 weeks ago. The doctors were very worried but wanted to give him a chance to come out of this pattern. It became evident as the day ticked away that, that simply wouldn't happen. Around 10pm he started to decline and it was evident to Robert and I that we had some really tough decisions to make. If he was re-intubated he would most certainly live a life attached to a ventilator. We had decided, when this journey first began, that we did not want that for him. While medical intervention has helped many, those choices are skirting with the will of God.

The time came when we had to make the decision. We prayed fervently to receive a peace about our choice....I instantly did. At the conclusion of our prayer, I immediately felt an overwhelming sense that told me his Heavenly Father was calling him home. I was brought to my knees and wept for my baby. We wrapped him in his favorite blanket and held him tight. He took his last breath moments after we told him that it was ok for him to go if He was calling for him. I love that little boy more than words can express. Watching him pass was the most difficult thing I have ever done or witnessed. I knew that at any moment I could yell for the doctors and they would insert the breathing tube...but what kind of life is that...hooked up to a ventilator. What a test...I knew Gods will. But knowing isn't nearly as difficult as following it.

Big Day

I just left my baby with a group of doctors and watched them wheel him into the operating room. Rob and I decided for Drew to get a G-Tube. It is a small tube directly inserted into his stomach. This will help us to ensure he gets all his medication and enough nutrition! This surgery will hopefully get us one step closer to going home!

We also got some more good news today...his homocystine levels are continuing to drop. They took blood this morning and his level is now 18!!!

Tomorrow will hopefully be the day the breathing tube comes out. This time tomorrow I hope to be holding and snuggling him for the first time in almost two weeks! I will post tomorrow to let you know how everything turns out!!! He is such a fighter!

Number Of The Day

My daughter, Alexis, loves to watch Sesame Street on Saturday mornings. In fact it became a routine we rarely broke. One segment they do is the number of the day. She loves to count along with the Muppet's as they count silly objects. Here is the number for today:

 

Although this number isn't from the Muppet's it is from someone much sweeter...Drew! Today they redrew the blood work that initially diagnosed him with a cobolamin defect. The maximum amount of homocysteine a normal person can have is a level of 15. When Drew was first admitted to the hospital his level was 125!!! His level today was 30!! That means the medications they are giving him have been VERY effective and it has been less an a week. This was incredible news. I immediately called my husband to tell him. He has been dreading the number 30 all year (he turned 30 years old last month) but I am pretty sure this is one of his new favorite numbers!!

This week will prove to be very important and looks to be very busy. I will keep you updated on his progress toward coming home!

A Pinch Of Patience!!

I suppose I should start writing my "recipe." Patience has to be the first ingredient for a number of reasons. When we first started this journey we had a lot of questions to ask but didn't receive any answers for a long time. For over a week we sat in the hospital watching our little boy, constantly wondering what was plaguing his body. We wanted so badly to know what was wrong. Isn't it every parents desire to help fix their children's problems?? During each step of the diagnostic process they kept drawing blood and taking cerebral spinal fluid for more tests....but where were the results? We even got the response "Well...we won't get any results until Monday because the lab is closed!" SERIOUSLY! How can a lab be closed! Don't they understand that this is my little boy, not just a serial number on the side of a tube. Now we find ourselves waiting again to remove the breathing tube they put in last Sunday morning.  This has to be one of the most difficult "lemons" because while he is intubated we can't move him. What a struggle it is not to be able to pick up my little boy.

Thankfully we have gotten some answers, yet with each step there seems to be more questions. We have had to be very patience throughout this entire process. Although waiting has been excruciating we have had some small moments that have really touched our hearts and reminded us that we are an eternal family. 

Before Drew's first seizure, one of my favorite moments was when he would creep his way right next to me to cuddle. He would snuggle his little face right next to mine and go to sleep. I loved it. When he was hooked up to a continuous feed EEG it was incredibly difficult to take him out of his bed. For two days we would sit right next to him and talk to him. One morning I was so exhausted that I laid my head on the edge of his bed and to my amazement, when I woke up, he crept his way right next to my face....just like at home. I was truly touched by this moment because it reminded me of what a sweet and beautiful personality he has. We had to snap a picture to capture the moment. 

 

We had a difficult time keeping the gauze (which was holding the EEG electrodes) on his head!!! Even though these days have been long and tough...I have added a pinch of patience!