Surgery this Tuesday April 20th

Jack and I went to see Dr. Creighton yesterday and he was cleared for surgery. We have to nebulize him 3 times a day for the next 3 days and finish his antibiotics, but he looked better then he has in about a month. As long as he continues to improve, then we will be going through with the surgery! Oy!

Jack made some great progress this week with his therapy also. He is much more responsive and saying WORDS!!!! He said "car" when I put him in the car and "outside" (with pointing) when he wanted to go outside!!! He also said "key" for this toy that Elise plays with him during his speech sessions. All great and very positive things!!! We can't wait to see how he improves after the surgery.

Enjoy the weekend!

New surgery dates!

Sorry for the late update!! We have rescheduled Jack's surgery for Tuesday April 20th, at 7:30 in the morning!! He will be the first surgery of the morning, and we think that is a great thing. He will still have to be in the hospital for 2-3 days and then home to recover.

Terry's surgery has been rescheduled for April 30th. We couldn't possibly have Jack's surgery on the 20th and then Terry's on the 23rd!! That would be CRAZY!!!

I will be sure to keep you posted on everything as it happens, in the mean time enjoy this beautiful weather!!!

Surgery Postponed

Today we went to see Dr. Creighton for all 3 kids. Liam has a cough, pink eyes, and is complaining of ear pain, Caitlin has a little cough and pink eyes, and Jack has a runny nose. We were going to see if Jack would be cleared for his surgery even though we had a feeling he wouldn't be.

Jack has a ear infection, Caitlin has a ear infection and Liam has a cold. No actual pink eye, we are thinking allergy's? Ugh, all 3 kids on antibiotics for the next 10 days.

I tried to call Dr. Wisoff's office to cancel and reschedule the surgery but they were closed today for good friday. I am hoping we can schedule for the following week and all the kids will be healthy!!! Fingers crossed!

Lots of egg coloring will be happening at our house tomorrow! Then we have planned a nice quiet Easter at our house with a BIG giant egg hunt for the kids!

Our Second Opinion.

Last night we drove in to Aunt Ing and Aunt Marilyn's house in that wonderful rain storm!! It wasn't too bad until we got diverted off the Hutch and had to take a very long and scenic route. We had decided that it would be nice since the kids are on break from school to take them with us and go to the Museum of Natural History to see the T-Rex ( and other things too).

Our appointment was at 10 this morning with Dr. Jeffery Wisoff at NYU. We were EARLY!!!! I am never early, so that was pretty cool. We met with Dr. Wisoff while Jack napped the entire time on Terry's lap. We really liked him. He was very nice and informative. In his office he has a computer that faces you as you talk to him. Whatever he is looking at on his computer, you are seeing on yours, very neat. We got a somewhat similar opinion as Dr. Souweidane, but also somewhat different. Now even I'm confused!!

He wants to operate on the cyst by performing a microscopic fenestration, instead of a endoscopic fenestration. Basically, this surgery would be a little more invasive but he feels that he prefers the outcome better and has more control while doing the surgery. He also said that they are unsure of what the long term prognosis is if it is done endoscopically. So instead of just going in and putting holes in the cyst, he will go in the same place, right up by Jack's ear, and remove a piece of Jack's skull the size of a silver dollar. Then he removes the whole front of the cyst and pokes holes in the back of it. After that he also goes down through the middle of the brain to where the fluid flows, or is supposed to flow naturally, and makes sure that it is all working properly. He will replace the piece of skull that was removed and secure it with some plates that his body will naturally absorb within a year. Jack will have to spend 2-3 days at the hospital and we can stay with him the whole time. He will need subsequent MRI's at around 6-8 weeks post-op, at 6 months, 1 year and 18 months, and if all is good then that will be it!!!!

Dr. Wisoff was also a bit more honest about the PDD diagnosis. While he will not guarantee it will improve, he says that when something that big is pushing on your brain, that wasn't always so big and you reduce the pressure, then it should make a positive impact! That was the best news of the whole day!! Oh, and his brain should expand back into the empty space that will be left after the fenestration. He showed us films of other cysts, before and after, it was all VERY promising!! There is a 10% risk that he can develop fluid on his brain that doesn't drain, like it has no where to go and if that happens then he has another 10% chance that he will need that drained as well. Other then that there is about a 1% chance that anything really bad would happen, which we know isn't an option.

We decided to go ahead and schedule the surgery while we were there today. He can take us this Tuesday (after moving one surgery later). Now we just have to hope that Jack's runny nose doesn't go into anything else or we will have to postpone it. It appears that Caitlin has a little something and Liam has a cold as well. Hard to imagine that it is going to happen so fast. We have mixed emotions, but we know that it is all for the best. We need to give Jack the best possible chance at having a normal childhood and living the rest of his life with this arachnoid cyst nothing but a thing of the past.

Once we scheduled the surgery they sent us over to the hospital to have Jack's blood work done. 5 vials of blood, but he was a trooper! We had to send Aunt Ing to the museum without us because it took 2 hours for the pre-op work.

At the end of it all we got to meet Ingrid and the kids at the museum, saw the dinosaurs, the big whale and the butterfly exhibit ( with a few stops in between of course).

All 3 kids had butterfly's land on them which is a sign of good luck. We'll take it!

Thank you to everyone for all your thoughts, prayers and kind words. It is very much appreciated!

Jack started his therapy!

Jack started his ABA therapy this past Monday!!! It is kind of exciting in a way to get it all going. So far he is only getting about half the recommended amount of ABA that he should due to lack of service providers. He is receiving 5 - 90 minute sessions a week, he should have 12- 90 minute sessions a week. His therapist is wonderful and he has really taken to her!! I think that is half the battle! Monday's are going to be the craziest day in our house I think, Jack has one 90 minute ABA session at 1, then a 60 minute speech session at 2:45, then we have parent training at 5 for 60 minutes, and to top it all off Terry has PT Monday mornings also!! And I thought we were busy before!

Other good news to report is Terry has FINALLY been cleared for his rotator cuff surgery and has a surgery date scheduled!!! He will be having his surgery April 23rd, at Hospital For Special Surgery in the city. He has waited a long time for this. It is nice that he finally has a date and he can get on with healing after being in pain for so long.

We are waiting for our next appointment at NYU with Dr. Jeffery Wisoff this coming Wednesday. It really can't come soon enough.

Enjoy the beautiful weather today! I can't believe they are calling for possible snow tomorrow!

Pictures of Jack's MRI

I was fortunate enough to get a chance to see Jack's MRI scan today. It is very disturbing. If you are upset about the images I apologize. I feel that I have committed to this blog, and will post all information as I receive it. These are 3 pictures taken with my iPhone off a computer so they are not the very best images, but you will get the point. The cyst can be seen on the left side of the skull in the photos. It is white in one photo and grey/black in the other two. The doctor says that once they fenestrate the cyst, the empty space will remain in Jack's head. His whole brain is formed and in his head, but the cyst has pushed it out of the way. So, removing it, or draining it, will stop it from growing and hopefully any pressure that it is causing on the brain will be alleviated.

Our first opinion...

Today we went in to Weill Cornell, NY Presbyterians Children Hospital and met with Dr. Mark Souweidane. We were their nice and early this morning...... well early in the morning, but a few minutes late for our appointment!!!

Jack would have been happy just racing up and down the hallways, but he did great watching Mickey Mouse Clubhouse on the IPhone (his FAVORITE show).

Aunt Ing came with us to the appointment, we decided it would be a good to have more ears listening. What we found out was comforting in a way. Dr. Souweidane said that in a young child like Jack that is also presenting with developmental delays, he would choose to operate on the cyst. He would perform a endoscopic fenestration (fancy word for hole). Basically he would make about a 1-2 inch incision on the side of Jacks head and then poke small holes thru the skull and into the cyst. This would drain the cyst, releasing the fluid back into his body. The surgery would last 1-2 hours and he would spend 1 night in the hospital. Arachnoid cysts are filled with Cerebral spinal fluid, so draining it back into your body is ok since this is what is naturally found in your body already. Dr. Souweidane is one of only a few Neurosurgeons who performs minimally invasive (endoscopic) procedures in the skull.

The Dr. says that if Jack were older and without delays then he would not operate. They typically choose to leave these cysts alone if they are not causing any trouble. He also can't say whether Jack's cyst is causing any of his delays. It seems they will make no promise that operating on it will make any difference with his PDD diagnosis. However, the Dr. has seen a number of patients with arachnoid cysts who also had ADHD, Autism or other global delays. In other words, the procedure is sort of optional. It is all kind of confusing and trying to write it is rather difficult. What we got out of it was, they won't say it will help, but other patients who have had the same procedure and also had delays, did notice a difference, but the Dr. won't say whether it was the removal or fenestration of the cyst that did it. Given his age and the size of his cyst, it is recommended to have the procedure. We are going to see Dr. Jeffery Wisoff on the 31st for a second opinion. If he has the same answer then we will most definitely opt for him having the surgery.

The risks are obvious normal risks of surgery, but a bit more given the location of the cyst. Children with these cysts do have a higher risk of hemorrhaging but "knock on wood" this has never happened. After the surgery they will do a MRI and then a follow up MRI a few months later. After that they will do yearly MRI's for 5-10 years. Dr. Souweidane did say that he would not recommend Jack ever play heavy contact sports like football, Lacrosse or Soccer. He will always have a little more risk of injury if hit in the head, although it is only about a 10% risk. Not too bad, running or swimming sound just perfect for him!!!!

Incase anyone is wondering why we might choose to do the operation when it is not 100% necessary, well we feel that we will always be aware of the cyst. We will always worry and wonder if having the surgery would have helped him and his development. Jack fell and hit his head yesterday (very minor) and I just about had a heart attack!!! This is no way for any of us to live. So, as long as Dr. Wisoff has the same or a similar opinion, we will be moving forward with the operation.

I hope this isn't too confusing, I'm confused writing it!!! I will keep you posted on Jacks progress as it happens. He will start his ABA therapy on Monday, and we are very excited to get that all going.

Caitlin has been home sick for 2 days with a double ear infection, but seems to have made an amazing recovery. Liam, is Liam, and enjoying going to two schools and making new friends every day.

"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." ~Unknown