Below are 5 letters that I wrote to family and Friends while we were going through our journey in NYC. I thought I would share them on my web site. If you want a more detail and more pictures of day by day of our journey in NYC read September post 2010.

Update Letter #1 to Family and Friends (August 19, 2010)

Nicholas passed the exams on Thursday and Friday by the study doctors with flying colors. So it is a green light he will defiantly have surgery on Tuesday next week. He just finished his 24 hour EEG (in which they put electrodes on his head and monitor his brain activity….nothing that hurts but just annoying to Nicholas). So now we just wait until Monday for the MRI followed by Tuesday morning a eye exam under anesthesia and then moved into brain surgery which will take about 5 hours. hmmmmm a lot to swallow. Nicholas is doing well other than wanting to go home and be with his own toys, this is not like Children’s hospital when it is SO catered to Children but it is fine. We are lucky to be here and chosen for this study. Many children have been turned away because they progressed too quickly from the screening and are no longer eligible. I know it breaks our hearts and thoes involved in the study as well.

We have our own private room. Chris and I plan to staying here together with Nicholas until his surgery. Then we will move our stuff to the hotel next door to the hospital. We will be able to set up Shane’s crate in the hotel room for when Nicholas is in the ICU. Shane (our dog) and I had  rough start as he started the weekend before we left he had diarrhea. It quickly cleared up by the time we left for NYC. Once in the city I was yelled at by the security about Shane going poops outside (I was picking it up) and then actually being in the hospital with a dog. With such emotion…I went back to our room and cried. Chris laughed and said seriously your crying about the dog!  It was all straightened out by our friend Patrick  who helps me tremendously with Shane. I have been emailing him back and forth about 2-3 times a day with questions. We are SO lucky to have him in our lives to help us with Shane. Actually Patrick called and straightened out the whole issue of the dog here for us. And then we got extra special treatment which we did not expect.  Shane has turned out to be doing great. Sleeping on Nicholas bed and giving him lots of attention.  That prong collar Patrick gave me before we left really came in handy as Shane decided he loves to chase the city pigeons. No longer does he even look at them. As much work as the dog is here….it also takes our mind off of just Nicholas and how nervous we are…

Lastly you all know Nicholas is the first candidate in this study. I also found out that when Nicholas is in surgery there will be a room full of people watching. The scientist, surgeons and other study people involved. They ALL want things to go as smoothly as possible which made me feel good.

I will update everyone next after the surgery.

Thank you for the cards, good lucks, finger crossed and well wishes.

We are on the 6North and room 221.



Update #2 August 24, 2010                    (Surgery Day)

Hello Everyone,
Thank you for all for your love and support to get us through these past few days with Nicholas in NYC.

Nicholas did good over the weekend last weekend here in NYC. He did have a small 30sec seizure on Sunday. We were afraid we would be excluded out of the study because of this. But, the docs and scientists discussed it and decided that it was okay. He has shown good seizure control for the past few months. So, Monday morning Nicholas had a MRI and followed last minute decision to get in the eye procedure in as well. So, he was under anesthesia for about 3 + hours. He was exhausted by the time we got him back and I could only get him to eat a apple sauce Monday night, NPO after midnight. The doc’s thought he had another seizure in the MRI but when they described it to me..he didn’t,  it was his twitching (myoclonic jerks). So they cut the MRI short.  So, by 1AM on Tuesday the doc came into our room and said we had to get a CT scan ASAP before surgery on Tuesday at 7:30AM, so we were kind of poked all night with tests and blood. Fewww  that was exhausting by the time morning came.

Surgery was today at 7:30 but it did not actually stuart until 9 and it lasted 5 hours. Nicholas did great. Breathing on his own after he was extubated after surgery. He has 3 one inch long incisions on the left and right sides of his head which are stitched shut with about 5-8 stitches. I did not look up close because it is SO gross. He has a reverse mohawk. The docs did not even shave the sides of his head. We had a tube placed in his nose for suction residuals that happen after surgery and then will be reversed tomorrow to a tube feed to keep nutrition going. His vitals look good since he came out of the OR at 3PM and the swelling on his head around the incisions has gone down each hour. When I first saw him… I could not help to burst into tears but medically Chris says Nicholas is doing excellent. Chris is staying in the ICU with Nicholas tonight.  I am having a very difficult time swallowing what he looks like.  We could only have one person stay with him for the night and we agreed it would be best if Chris stayed.  Tomorrow he will be re-sedated and have another MRI in the morning.

I am off to bed as it has been quite a stressful day few days. Hope you don’t mind me telling you in detail what we are going through.

We are so lucky to be chosen for this surgery/procedure. Nicholas has a chance. Time will tell what he gets back. We are just hoping he will get through the healing with no seizures.  And I know he will get better bit it will take time.

Will keep you posted. I think we will be in the ICU for about 3 days and then move to the hospital floors. I know they quickly want to get us out of the hospital. Then we will be in the hospital hotel for a week or so.

Hugs and kisses to all of you!



Update #3 Friday August 27, 2010

Hello Everyone!

Nicholas is still in the pediatric ICU. He is improving each day. I stayed with Nicholas in the hospital last night.  It does not matter if I am at the hotel next door or sleeping in his room. I just don’t sleep.

Nicholas’ first night after his surgery was a bit rough with him throwing up most of the night. Luckily Chris was there and taking care of him  and making sure things were done right. It was unclear if it was from the single dose of morphine, meds from surgery or if his brain was swelling. Chris had the neuro surgery resident come see him in the middle of the night to re-evaluate him. They determined it was most likely from the morphine. They gave him some medication for his tummy which helped. Can you believe the only pain medication he is on is tylenol. Nicholas is so brave and strong. If I had brain surgery I would want someone to knock me out for days!

He got through day 2 post op surgery well, making small steps forward.

We started his tube feeding yesterday.  Just to give him a small head start onto feeding and get that stomach churning. He really had not had any nutrition since sunday. The rate was started to fast and Nicholas ended up throwing it up after an hour, but once we started it on a very slow rate he was able to tolerate it just fine over night. He seems to be swallowing liquids just fine so we also hope to get the feeding tube and IV out today. I know it would really make him feel better and I think he will slowly move forward eating. He is doing great sitting up and talking one to three word sentences. The stiches on his head look good (okay to me they still look gross) but medically they look healthy. We hope to be moved out of the ICU today…it is so loud with all the bells and alarms going off in our room from our room-mate as well as other rooms on the floor. Baby’s crying…it is just loud.

Shane was able to go into the ICU to be with Nicholas yesterday. He must of licked Nicholas feet for about 20 minutes. He was just so happy to be with his “boy”. This big dog snuggled up at the end of Nicholas skinny bed and fell asleep. It was cute.

We hope to be able to leave the hospital in 1-2 days. Best to get Nicholas out and stopped being poked with blood draws, temp, blood pressures ect. I know they have to check everything but after a while Nicholas gets irritated by the constant pokes by the nurses and staff.

I am so glad Nicholas is getting back to his spirited self. Nicholas is already telling knock knock jokes this morning.  I think my biggest fear for Nicholas to go through this surgery that he would not return to his spirited self. He has and I think I am on the edge of each word he says.  It will take time to determine if this surgery really work to stop his Batten disease but for now he is slowly coming back to his base line.

Thank you again for all the emails, cards and well wishes. Everyone of you has touched our lives enormously.  It is because of all you helping us care for Nicholas, help with our foundation, been a friend to us, shared our tears of sadness and joy on this journey.   We are lucky to be surrounded by your love, kindness and generosity toward Chris, Nicholas, William and I. Thank you from the bottom of my soul I will be forever grateful toward my family and friends getting us through this with Nicholas.

Will post another email in a few days.


Update #4 Sunday                August 29, 2010

As most of you already know we are out of the hospital.

On Friday Nicholas took his IV out himself, I guess he thought he did not need it anymore.  Then Chris took out his NG-Tube a few moments later. I guess the boys had enough of being in the hospital.  After the NG-tube was taken out the doc’s wanted to make sure Nicholas could take his meds by mouth. He did but did but he was not impressed with jello and apple sauce… he wanted PIZZA. Chris ran out and got him some pizza and he ate everything but the crust. Then got out of bed and walked down the hall with Chris’s assistance. We were thrilled. So, there was no reason for them to send us to the floors but just discharged us from the ICU because Nicholas was making leaps and bounds of progress.  He looks great and really is back to baseline..talking, eating and slowing getting back to his mobility (a bit wobbly but that was to be expected after 5 days in bed).  His spirit is back!

Nicholas had a great sleep in the hotel Friday night, a bath in the morning and we went out for lunch. Later followed by a hair cut for the boys. We are just SO surprised how quickly he came back to himself. It seems to us that he is also saying more words and a little more clear. I am just thankful to have a Nicholas back to saying “mom” and “dad” but he says much more and is doing excellent.

Thank you again for all the cards, notes, emails and packages. Our hotel is only next to the hospital so I have been checking to see if we got more mail at the hospital.  We are looking forward to seeing William at the end of next week! We have one doctor appointment next week and then on Sept 7 we have to go back into the hospital for a 24 hr EEG to check his brain activity. In the mean time I think Chris and I are just celebrating Nicholas. He is such an amazing boy!

I think we experienced a miracle.

Thanks you again and see you when we get back on Sept 8.


Update #5 Wednesday September 8, 2010

Hello Everyone!
We are finally home. Was not sure we were going to make it home today but we fought our way out of the hospital.

Nicholas got his 30 + stitches out yesterday, had his last procedure last night which was a 24hr EEG and plans to have blood drawn this morning. Then we could leave. I stayed at the hospital with Nicholas. He had a good night and he slept well but he did have a small 1 minute seizure this morning before morning meds. It was short and I was glad for that because I had no idea what type of seizures to expect after surgery. He made it 2 weeks post surgery with no seizures which was great!  It was all caught on tape of the EEG.  The hardest part for me was to watch when the resident and fellow started a IV on him.  I am for learning/ teaching but…not on my kid! I know they needed to get the iv into to give his meds this time but arrrhhh I was sweating bullets and tears in my eyes as they tried over and over. I just get emotional over Nicholas. My poor little guy. He got his meds and fluids which was needed!  So I was worried Nicholas’s team would make us stay over night again. I think they saw the look on my face that I could not stay another minute having Nicholas poked. It is just the routine of a hospital stay. We had to get him home to get better.

So, 5 hours later and we are home and all exhausted. Nicholas was already very tired and worn down which I think it was from the seizure, some weight loss and well… maybe the brain surgery… Now that we are home I know he will return back to baseline and then we will plunge forward. It will take a little time to get his weight back to where it was but we have no doubt that Nicholas will be great in the next few months.

Thank you for the welcome cards at home and at the hospital. I did still receive a few while we were in NYC. Thank you and I will be updating my web site soon but you all know first hand our journey. I will be posting pictures as well soon.

Hugs to you all

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