New Neurologist, EEG, and Sensory testing!!

Wow!! How much could possible be going on all at once?? I don't really think I could handle another thing on my plate right now, it is overflowing!!!
Let me start with our new Neurologist. I called Dr. Wisoff, for a referral. He recommended Dr. Sandra Forem at NYU. It didn't take too long to get a appointment with her. Wouldn't it figure she doesn't take our insurance and it is $550 for the initial visit, OYE. Interesting how you will pay anything to see a good Dr. for your child, huh.
She proved to be amazing. She spend close to 2 hours with us. Asked us all sorts of questions. She was really thorough. We left having to schedule a ambulatory EEG to rule out seizures. She said we would hate her for having us do it, but it had to be done. Then, the most interesting stuff happened!!! We got to talking about Jack's flat feet, and we mentioned that ALL 3 of our kids have flat feet (neither Terry or I do). Now we learn that Jack has low muscle tone, and some sensory issues. He could use a OT eval and a PT eval. Dr. Forem thinks that all 3 of our kids probably had low tone and therefore all have flat feet. Interesting. They will probably not be the most athletic kids, like in basketball, or soccer, maybe they'll be good at swimming ;o)
We had Jack's EEG done, which, as Dr. Forem said, was a nightmare!!! Oh, NOT FUN!!!
First we had to be in Lake Success at 9:00am on Saturday. It took about 20 minutes to put on all the electrodes, all of which Jack screamed like you have never heard a child scream. Thank goodness he slept on the way home. He was pretty lethargic all day. He really didn't want to do any kind of playing, and he actually wore the backpack with the machine in it!!!
By 4:30 he had ripped the gauze covering off. Terry luckily was close by and pushed it back on as best he could. Then Jack and I went to bed together in my bed so he didn't strangle himself in the wires. At 11:30 he took a big 2 1/2 year old roll across my bed and off came the whole thing. So not fun. We had to remove it. Only took another 30 minutes, and a shower. Poor Jack all he wanted to do was sleep!
But then we got the good news. NO Seizures!! YAY!!!
So on to the OT, PT evaluations!
Since Jack is nearing his 3rd birthday, he will have to transition over from EI to CPSE (the school district) for services. We have to have all new Evaluations done. Our door has been revolving lately, not only with his regular therapists but with Speech evaluations, PT, OT, Educational and Psychological evaluations. We always learn so much from these therapists. We new that Jack had some sensory issues. But never really new what that meant. Now we have been reading up on it, and see some similarity's with Caitlin. Could she have a Sensory Processing Disorder? hmmmmmm. It would be so nice to know what makes her tick, what makes that brain of her's work. She has started taking Yoga classes and loves them. I think it is her now favorite thing. We have several video's Caitlin likes to do at home, but now she is attending an actual class. There really is such a big difference!! I think it will be really good for her.
Now we have ordered a trampoline, oh not 1 but 2!!!! One for outside and one for inside because apparently they are the best for a Sensory Diet!!
I have always be very anti trampoline and now I will have two of them. The kids are already being warned of the rules that they have. The more we read about Sensory integration, and Sensory processing, the more we see it in Jack and Caitlin. Knowledge is power, right?
To top it all off I am closing up the Salon from Main St. and moving it home. I will be taking clients at my home and visiting peoples homes from now on. I am very excited to have more freedom and time to spend with my family. I have really needed this. However closing up a whole business is NOT easy, but I am certain it will be much better!!
For now, lets hope this weather keeps getting better, and summer WILL come. I need Gin beach more then ever before!

- The first step towards getting somewhere is to decide that you are not going to stay where you are.

March 1, 2011

I can't believe how long it has been since I have posted on here! Too long, that's for sure. Most important we had Jack's 6 month post op check in December and it looks great. Less fluid at the main cyst, a little pooling around other parts of his head, however Dr. Wisoff says that this is normal. Jack may always have some extra fluid in his head. For the MRI Jack had to be put under and he did fantastic!! The best yet. He woke up like nothing happened, sat up and wanted pretzels (his favorite food).

To the left is a picture of two scans. The one on the left is from June and the one on the right is from December. Quite a difference I think. Everything had a lot more room in there now too!

Another thing I'd like to mention is that Jack is on a gluten free diet. He has been for several months now for his attention. We actually think it has helped him a great deal! It also seems to have helped his reflux. He doesn't seem to cough at all anymore since he hasn't had any gluten. It has been a definite learning curve for all of us and quite expensive but worth it completely.

About a year ago I came across the North Star Foundation online. This foundation breeds and places companion or therapy dogs for children on the spectrum or some going through a critical disease or suffering a extreme loss. The dogs are typically Golden Retrievers but can also be Lab's or in the case of allergy sufferers they can be poodles or Golden/Labradoodles. We agreed that this would be a great addition to our family especially for Jack. Our golden retriever puppy was born on October 20th 2010!!!! We just had the opportunity to meet with him over the weekend. His name is Buddy. He is being raised in New Jersey by a wonderful couple. We can't wait until he comes to live with us, but first he needs to learn his manners. Here is a picture of Buddy!

Isn't he cute!!! We just love him!

I will try and update more. But we all know that probably won't happen. We are going to see a neurologist in NYU on 3/11. We are hoping to find a Dr. who can give us a little more insight into Jack and what we might expect in the years to come.

Here is a picture of Jack in Hilton Head Island, SC on our recent family vaction.

We are very proud of Jack and all of his accomplishments. It has been one very long and busy year.

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!!

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!!!

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

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!

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!!