Wednesday, August 18, 2010

Finally a update!!!

Yes, I have said it before, but now it's official. I am the worlds worst blogger!! We have had such a busy summer, I have truly had no time!!!!

In June, Terry and I brought Jack into NYU for an MRI. We stayed over that night with a friend of mine Louise in the city. The MRI went ok. It wasn't scheduled until 3pm and a 2 year old with no food until 3 was not fun!!
The next day we met with Dr. Wisoff at 10:30. We got to the office at about 10 and were going to eat some breakfast, but he took us right in. Who knew a Dr. could be EARLY???? He is amazing! We got to view the MRI results with the Dr. and the results were truly amazing. His cyst has gone down 50-60% in size!!! He has no more midline shift and a little bit of fluid around the front of his skull, but it looked like it was going down. His head size also went down 2 centimeters in size. Dr. Wisoff was very very happy with the scans and how Jack has been doing. We couldn't have been happier.
Since then Jack has been continuing with his therapy every day and doing really great. We LOVE his therapists, and he seems to be making gains regularly. We have been taking Jack to the beach or Mimi's pool as much as we can. Jack just loves the water. He sits all the way up to his neck in the water at long beach, and has no fear of the water at all (which scares us to death). Jack is happiest outside playing on the swingset or playing in the water!!
Our next step is just to continue with Jack's therapy, and go for another MRI in December. I have a picture of the recent MRI on my old phone. Once I get it off of there I will post it. You can visually see the difference in size.
I will try again to be better with my updates!!

Wednesday, June 2, 2010

I am THE WORST blogger there ever was!!! I am sorry I haven't updated in so long. I guess it is true, no news is good news!!
Everything has been very busy with the end of the year upon us. Caitlin is having her Kindergarten show on Friday, they are dressing up as penguins! Liam is finishing up school as well, I think he only has a week and a half left! Jack has been doing great. He seems to be making great gains with his therapy. We now also have another ABA therapist. He is getting seen 2 times a day, 5 days a week for 90 minutes a session!! He is also still getting speech 2 times a week. We are very pleased with his progress. He said ladder today and we found out he says Mickey!! Sounds like dickie, but we'll take it! He has been mastering some goals in therapy as well, he really is doing great.
We have his follow up MRI on Tuesday the 15th and he will see the Dr. on Wednesday the 16th. It will be very interesting to hear what is going on in there.
In the mean time, my sister has moved her business (Quilter's Paradise Online) to Bridgehampton and I started playing softball on the women's PBA team in East Hampton. Feels good to have something to do for myself!!!
I will update soon, definitely after his next Doctors appointment!!!

Thursday, May 6, 2010

Ok, so Deirdre and I drove into the city on Monday in the pouring rain!! It took us over 3 hours, so we were late, of course. When we got to the Dr. he walked in and looked at the stitches and said "looks great, aren't you happy your drove all the way in here for that."
I reminded him about Jack's eye that keeps wandering, and he thinks it needs more time. Ok, so that was it. I think, or I know that parking garage took us far longer then the appointment!!!
I made his MRI appointment for June 15th and his Dr. appointment for June 16th, so it looks like we will be staying over in the city that night. It is strange, but I can't wait for his MRI. I am curious to hear and see what they think.
Terry is feeling good since his surgery. He would like to do more then he should and is driving us crazy, but he is recovering well. Shoulder surgery is much easier then spinal surgery, just incase you wanted to know that!!

On a side note, we sold our camper!! YAY!!! We will now have a nice big driveway to park in and play in. What fun. We will miss the camper and the memories, but for now, it is better to see it go.

will update soon, but for now a quote, just sums up how I am feeling at the moment!!

Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover.
~Mark Twain

Sunday, May 2, 2010

Since Jack's surgery he has been slowly getting better. It truly is amazing how fast children bounce back.
Jack was really wobbly and dizzy, we called the Dr. and asked him about it and he had us take him off the seizure medication. We think that has made a difference in him. Then, on Thursday, I noticed that his right eye wasn't tracking right. It was wandering off to the side when he was looking at me. It has been doing it quite a bit since then as well. Tomorrow, Monday the 3rd, we are heading in to see the Dr. with Jack and my friend, his Godmother, Deirdre. It is just a routine 2 week check-up, and he will check out his eye to see what is going on. The Dr. thinks that as the cyst is collapsing the fluid is flooding his 3rd nerve and causing the eye to wander.

This past Friday, Terry went in to the Hospital for Special Surgery and FINALLY had his shoulder surgery!!!!! We LOVE HSS, it is such a nice hospital. Dr. Fealy performed Terry's surgery and did a great job. He said his rotator cuff was ok enough and didn't need surgery, but his bicep tendon was shredded and needed to be repaired, his labrum was torn bad and needed 2 screws and lanyards to fix it, and he had a bone spur that he removed. So far Terry is feeling good and just hanging out. Unfortunately it is his right shoulder and he can't move it, at all, for 2 weeks!
I'd like to thank all the people who have been making us dinner this past week. Everything has been so yummy and really a life saver. It is nice to know that your friends and people in the community are there to help you when you need it most! Such a blessing to live in a great town, filled with great people!

Thursday, April 22, 2010

April 20th-22nd.

Jack made it through the surgery just perfectly and is now home sleeping in his bed!!
We arrived at NYU at 5:45 in the morning on Tuesday. Nervous and tired, we did all the pre-op stuff and talked to the nurses and Doctors who were going to be taking care of Jack. His surgery was scheduled for 7:30 in the morning and they took him at about 8. I was nominated to go with Jack into the OR, so I could be there when he went to sleep. They gave him something about 15 minutes before that so he would be calm and wouldn't remember anything. I am not sure how well that worked, but he went with me willingly even with the jumpsuit, booties and cap on. It wasn't until I put the mask on that he got mad and kept pulling it off.

The surgery went really fast. They said it takes about 1-2 hours just to get everything ready, and that the actual surgery would take about 1-2 hours. Dr. Wisoff came out to us at about 10:40, ok it was 10:38 to be exact (why I remember I really don't know). He said that everything went really well and his assistant was putting the last stitch in when he came to talk to us. They did the craniotomy and the fenestration and he said that when he went into the back of his skull that the cyst had shifted and was deteriorating the bone that covers some of his nerves. Mainly the one that controls the whole right side of his face. It was totally exposed which he said is ok, he had just never seen it before, and when they were irrigating it Jack's heart rate started to drop so they had to wait in between. I guess it is a good thing the surgery happened quickly and Jack didn't have any problem with that nerve!
We went up to the PICU on the 9th floor and waited for Jack to get up there and them to come out and get us. We were a bundle of nerves. I think we had to wait 15 minutes but it felt like an hour!! Terry and I went in and saw Jack, which was very scary and emotional for us. He was really upset and had a HUGE turban of gauze on his head. He was really out of it and wasn't opening his eyes. I think it took us a couple of hours just to calm him down when he finally fell asleep on Aunt Ing!!!

His head was VERY heavy and it was tiring trying to hold him even asleep. We were happy to have 3 sets of hands to pass him around. The PICU was crazy with 3 other beds in the room and monitors were beeping all night long. Jack was doing pretty good. In the beginning hours in the PICU he was getting really red and hot, with a rash all over his body, and then suddenly it would go away. It seemed like at the same time he would get really agitated and start thrashing around and then his heart rate would jump to about 220 bpm. We still don't know what this was a reaction from, but one nurse said probably something they gave him in surgery. I slept in the PICU with Jack the first night. Well, I wouldn't call it sleeping. We dozed here and there, but all the noise from the other patients didn't really make it good for sleeping. That and Jack waking up every hour or two.
They moved us on Wednesday into the Pediatric unit and out of PICU. We were thrilled to say the least!! Our nurse was terrible in the PICU and we were sure there had to be someone better in the other side. Right after we were moved they took Jack down for his MRI. Everything looked great on the scan, they said that the fluid was flowing where it should and that the cyst had even gone down a little in size. GREAT NEWS!!
That night I stayed with Jack again and we had NO roomates. Finally some decent sleep. We passed out around 8:30, and had to get up about 10 for more meds. I also had to keep him up til 11 for another dose of a different medication. After you have brain surgery they put you on anti-seizure medication, it makes you very irritable (and Jack got that side affect for sure). He has to take it every 12 hours. He is also on some steroids(for swelling), tylenol with codeine for pain, and pepcid for his tummy. We both felt so much better after getting a little sleep. Jack would have some wakeful periods where he was really alert and watching his favorite show, Mickey Mouse Clubhouse.

This morning we met with the surgeon again and they told us we could go home today!!! YIPPEEEE, the best news!! They took off Jack's turban and he was really happy. He finally could play with his hair, and stop trying to rip it off every 5 minutes. It must have been so itchy and sweaty.

The incision goes from the very top of his ear in a zigzag all the way up to the top of his head on the right side. It really is amazing what a great job they did. They barely cut any hair at all and they did a zigzag so that his hair will lay down right over the incision and you won't be able to notice it. Even in the picture it is hard to see.

We couldn't pack up and get out of there fast enough! He does have swelling that gets better and worse depending on where he is laying and he also has a black eye on the side where they did the surgery. Before we left, the floor pediatrician was doing rounds with some interns and stopped in to ask us some questions about Jack and the cyst. I thought it was good since they said they were just wanting to learn more about these cysts and what types of symptoms he had that led us to get a MRI.
Jack will continue with his therapy starting back again this Monday! For now he has no limitations, although he is a little blurry and not steady on his feet. We will go back in for a few more MRI's but I think we are out of the woods now!
Thank you to everyone for all of your blessings and for thinking of us. All of that positive energy really made this all so successful!

Saying goodnight for now with a smile from my son Jack on our way home from the hospital today!!

Saturday, April 17, 2010

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!

Wednesday, April 7, 2010

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!!!

Friday, April 2, 2010

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!

Wednesday, March 31, 2010

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!

Thursday, March 25, 2010

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!

Friday, March 19, 2010

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.

Thursday, March 18, 2010

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

Tuesday, March 16, 2010

Today I received a phone call from Weill Cornell Medical center, department of Pediatric Neurosurgery. While making a appointment for Jack yesterday they asked me to fax over his CT and MRI results so that the Doctor could review it and if need be, get him in sooner. I got a call today requesting we bring Jack in this Thursday 3/18 at 8:45 am. (in 2 days) Dr. Mark Souweidane had reviewed the reports and wants to see Jack sooner rather then later.
I have some mixed feelings about this. On one side I am happy to be getting seen sooner and will get answers much faster. On the other hand I am worried because one of the top Neurosurgeons in the country feels that Jack needs to be seen soon. Still looking on the bright side, but getting very scared. We will be traveling into Westchester to stay with Aunt Ing and Aunt Marilyn tomorrow night!! Now that is something to look forward to!

Monday, March 15, 2010

How it all began

My name is Erica, I am married to Terry and mother to Caitlin, Liam and Jack. We live in Sag Harbor, NY within close proximity to NY City and some pretty great hospitals. I am so very thankful for that! I decided to start this blog after learning that my youngest son Jack, has a arachnoid cyst in his head. I spent days googling to find very little and very conflicting information on these cysts. I am hoping by starting this blog, I can help other people out there looking for information and maybe save them some time and aggravation.
And so it began:
It is hard to even remember the beginning of Jack's journey. He was born at 39 weeks, with no complications. He weighed 7lbs. 11 oz and was 20.5 inches long. His head was 14 3/4 inches around, WOW!! Thank god he was my third! He was bottle fed from birth with no problems. At about 2 weeks old Jack developed a cough that sounded like a seal. At our next Dr. visit I mentioned it but he wasn't coughing and they said his lungs were clear. When Jack was 2 months old his head had grown too fast and we were asked to get a CT scan done to rule out hydrosephalus. I brought Jack for his scan and they said he did not have hydrosephalus, Phew!!! At almost every subsequent visit I mentioned his cough, it was not constant but happened every day. He would never cough for the Dr.!!! At one point they said he might have a soft esophagus and would grow out of it. Jack was my BEST baby, he rarely cried and was very easy. At around 8 months we started to try Jack on cheerios and puffs. He would gag and choke on them and then throw up. At his 9 month well visit they told me that he "just wasn't ready". This kept happening every time we offered Jack cheerios or puffs. At his 1 year visit (which I didn't get to until he was 14 months) I mentioned it again and they said when he wants to feed himself, he will eat. Well, that was not quite the answer I was looking for. I asked the Dr. who I would bring him to, what kind of specialist would we see. The answer, a Otolarangologist. Dr. Max April!!! He had taken our daughter Caitlin's tonsils out in March 2009, we really like him. So in October 2009, we saw Dr. April for Jack. He scoped Jack and found he had reflux. This was most likely the cause of his seal cough and the gag reflex that would make him not able to eat cheerios and the like. He encouraged us to seek early intervention for speech and swallowing immediately. He was very alarmed that Jack, at 15 months was not chewing anything.
After this appointment it was nice to hear that I wasn't crazy and that someone believed me!!! What a relief! I contacted EI and made a appointment for Jack's evaluation. A few very nice women came and did his Eval. They, at that time, did not approve him for services, but did ask us to have his hearing checked.
Back to Dr. April we went, and his hearing specialist tested Jack's hearing. Dr. April was not impressed that we were denied services by EI and he encouraged us to try again. Well, what Dr. April says to do, you do!!! We scheduled a supplemental speech eval with another specialist. This time Jack was 18 months and still not chewing or talking. Dr. Amato from North Shore Speech and Swallowing came for the evaluation. He was very alarmed by Jack's aversion to food and his lack of speech. We were finally approved for services!!! Dr. Amato recommended we get a psychological evaluation for Jack as well. He was alarmed with his delays in his social and play areas. In the meantime we started 2 hours of Speech and Swallowing therapy a week with a fantastic speech therapist, Elise Duryea.
We set up another Eval with Dr. Andrew Voughn of Up Wee Grow. He arrived to the evaluation early one Friday morning in February. Dr. Voughn spent over an hour with us that morning and when he left he shocked me with a diagnosis!! He diagnosed Jack with PDD- NOS, pervasive developmental disorder. In short it is an Autism Spectrum disorder.
Jack will start this Thursday, 3/18/10 with 18 hours of ABA a week and 2 hours of speech a week. Now if we could only find enough therapists to fill in all that time!!!
Now I have to backtrack a month. For Jack's 18 month well check I decided to switch pediatricians. I wasn't happy with our current group and heard a GREAT doctor had just started up again after having 4 kids!!
We went to visit Dr. Creighton in January and she was alarmed by Jack's large head size and his lack of speech. I told her all about his evaluations, reflux and CT scan. She recommended we see a Neurologist. We made an appointment with Dr. Gail Schuman in Stony Brook. She was very nice, and ordered an MRI (just to be safe).
On Thursday, 3/11/10 we went to Stony Brook for Jack's MRI. He had to be put under for the scan so he would stay still, poor little guy. And of course as luck would have it his outfit with NO snaps was peed on right when we got there!!! NO WAY!!! Thank God we had another outfit, with snaps, so he had to have his scan in his diaper, but they wrapped him up nice and warm with blankets. The staff were all very nice!!
The scan took about 45 minutes and then Jack napped for an hour in recovery!! Nerve Wracking!!!! Ugh, nothing like making your parents wait! He woke up pretty cranky from the scan but after some juice and milk we were on our way home.
I had to wait all day on Friday, until 5:15 pm for the Neurologist to call me with the results!
"There is an abnormality in Jack's scan", that was all I heard for a minute, I just thought he had a large head. "He has a large arachnoid cyst in his head, between his brain and his skull." Ok, I said, so is that what is causing his delays?? "No, I don't think so." said the doctor. Probably just something that happened at the same time during his development. Normally these cysts don't cause any trouble and rarely need any surgery. However, Jack's is very large and not draining back into his body properly, I need to refer you to a Neurosurgeon........
Googling was all I have done all weekend. There is some interesting information out there about arachnoid cysts, but not quite enough which is why I am starting this blog. If I can help just one other family with Jack's story, then I have succeeded.
Today I spoke to my FAVORITE pediatrician 3 times. She faxed me the MRI report, this is what it says:

There is large CSF collection noted on the right middle cranial fossa extending superiorly along the right sylvian fissure with mass effect upon the adjacent frontal and temporal lobes without midline shift. It measures about 6.1 cm in maximal transverse dimension, 9.5 cm in height and 7.2 cm in maximal AP diameter. This is likely a large arachnoid cyst. There is no diffusion abnormality. The ventricles are normal. There is no midline shift or focal parenchymal abnormality. There is no intracranial hemorrhage.

A large arachnoid cyst in right middle cranial fossa as described.

After some more googling, I have realized that this is a very large cyst. :-(
How could it not have something to do with his delays? It is pressing on the part of his brain that controls all of his issues!! Time will tell I guess.
Today I made a Neuro consult with Dr. Jeffery Greenfield at Weill Cornell Medical Center in NYC on March 26, and a second opinion appointment with Jeffery Wisoff at NYU on March 31. They are going to review the reports and maybe get us in sooner, I have my fingers crossed!! I know it will all be ok, it is just torture to wait even a day or two with no answers. But this is where the Journey Begins, hopefully all of this information can help someone out there. I will update often!