Railroad Museum

We took the kids to the Railroad Museum yesterday morning. We've been wanting to go check it out, so we were excited to finally get to go. The first floor is full of real trains and historic information. We got to walk through an original mail train, a dining car and a sleeper car. Very neat! Then the second floor has a bunch of Thomas the Train train tables set up for kids to play with. Needless to say, this was a hit with our four kiddos! I had to bribe them with salt water taffy to get them to leave for lunch! They were having a great time. It's fun to see them just loving life and being kids. We finally got them out of the museum and headed into Old Town for a picnic lunch. We got to see 3 trains go in and out of the train station while we ate, which the kids thought was pretty cool! After lunch, Jacob and I hit the candy store for some taffy and then we headed home for naptime. Thankfully, the kids stayed awake on the way home and then took a great nap. We had a fun family day and were exhausted by the time we got home!

First week of preschool

Jacob started his new preschool on Monday! He's going MWF mornings and so far, it's going good! Monday was a welcome day where mom's and dad's were able to stay with their kid to adjust to the new classroom. I went with Jacob and had a great time. We did puzzles, colored, played kitchen and lots of other fun things. Wednesday morning was the actual first day of class. He went in with no problem! I gave him a hug and kiss goodbye and off he went! We got his medical bracelet a few days before school started, as well as a new pair of Spiderman light-up sneakers - he was all set! I'm not a fan of the shoes ... I wanted to get the cute, stylish pair at Target, but Jon told me to let it go - "he's a boy"! So, I'm letting it go (even though they are ugly!). It's hard to believe that once this school year is over (on Jacob's 5th birthday), he's going to Kindergarten! The little kids were with me when I dropped Jacob off on Wednesday and when I got back in the car they kept asking - "where Jakey?" I think they asked me that about 100 times that morning - so cute! When we got home, Dylan found one of Jacob's Star Wars toys and he said - "Jakey, Star Wars". I told him to play his little heart out because Jacob wasn't here to tell him no! I think they enjoyed the alone time with mommy (and Jacob's toys!).

Update

It's been over two weeks now and no seizures for Jacob!! Yeah!! It appears the medication is working, thankfully! 80% of people who start on anti-seizure medication respond to it well. I'm so relieved we're in that 80%! We hear stories of others who go 2 or 3 years and can't find the right medication for them. Very frustrating I'm sure. We're just praying every day that it continues to work and keeps his little body safe and seizure-free. It's still a daily struggle for Jon and I... always wondering if he'll have a seizure or if the falling activity will start again. It's been hard for me being home with the kids all day. I'm constantly assessing every situation and thinking to myself, "ok, if he has a seizure right now, what would I do?" And I guess that's good and bad... good to be prepared, but probably not the healthiest way to spend my day. I worry about keeping Jacob safe, yet still taking care of three 2-year-olds. I can't watch him all the time and I have to let go of the fact that I can't control this situation. I think that's what it boils down to for me... I have no control of this and it sucks (to put it simply). As a mom of 4 small children, I've always tried to keep our lives under control in order to keep some sanity and calmness around here. But this situation is completely out of my control. I know that's the bigger lesson for me and I'm really trying to accept that and change, but it's a tough one. It is getting easier as the days go by, but it's always on my mind. I think it will always be on my mind.

I signed Jacob up today for an account with Medic Alert and ordered him a medical bracelet. I'm hoping that will give me a little bit of peace when he's not with Jon or I (mostly at school). I talked to his new preschool today and they were very supportive and will work together with us to make it the best possible environment for Jacob. That is a huge comfort for me. It's hard enough shipping your 4-year-old off to preschool 3 days a week, let alone your 4-year-old who has just been diagnosed with Epilepsy. Again, letting go of the control... who knew I was such a control freak!? :o)

Diapers and Duct Tape

How do you keep a diaper on a 2-year-old who doesn't want to keep her diaper on?

Two words = Duct Tape

Jacob and "Four"

After having his blood drawn on Monday, a very nice nurse gave Jacob this stuffed animal dog. He loved it and it has become his new BFF. The other night I asked Jacob what his name was and this was the conversation:

Mommy: "Jacob, what's your new doggie's name?"

Jacob: "Umm... I think his name is "Four"."

Mommy: "Four, huh? How come Four?"

Jacob: "Because I'm four!"

Good enough for me!

His ouchies!

He has been such a tropper through all of this. We are SO proud of our little guy!

Jacob

Where do I start? The last 2 weeks have been such a roller coaster for us. It all started on Sunday July 19th. It was a typical morning. We were getting showered and dressed in our room while Jacob watched cartoons. All of a sudden, we heard Jacob fall to the floor without any apparent reason. There wasn't anything around him, he just fell. We chalked it up to normal kid clumsiness and continued on with the morning. I took the kids swimming at my parents house that afternoon and Jacob "fell" two more times there. Again, there was nothing around him to trip him up, he just collapsed to the ground. It was hard to figure out what was going on because I never actual saw the fall, just heard the crash and crying that followed it. That night when Jon got home I told him what had happened and we both agreed we needed to keep an eye on him to see if this kept happening. The following day was our trip to Gilroy Gardens. He fell twice at the park - once was on the water play ground and another time waiting for the train. It was hard to know what was going on because again, the play ground was slippery and he was kind of playing around on the railing at the train station... so was he falling because he was goofing around or was something else going on? We all started watching him like a hawk from that moment on. We went to Denny's on our way home and he collapsed while we were walking to the table. I was holding his hand and his legs just gave out. He wasn't loosing conciseness or blacking out, he was just loosing his balance and falling to the ground. The next morning he fell at home at least 3 more times and by 1:15 Jacob and I were at the Pediatrician's office. He did a neurological exam which was normal and said that it might be related to the flu we all had over July 4th. He wanted us to go home and observe Jacob for the next few days and call with any changes or if things got worse. I told the doctor I felt really uncomfortable leaving with no explanation as to why my 4-year-old was dropping to the ground 4-5 times a day. He reassured me that observation was the only thing right now, so we headed home. The next day was Wednesday July 22nd. Jacob had a full-blown seizure at 7:45 am. As usual, the 3 of us were in our bed watching cartoons and waking up for the day. Jacob was in between the two of us and I didn't even know anything was going on. Jon yelled Jacob's name and I immediately jumped up, saw what was happening and dialed 911. The 911 operator walked us through what to do and within minutes the ambulance was here. Jacob's seizure lasted about 45 seconds, but felt like a lifetime to Jon and I. Jacob and I rode to the hospital via the ambulance while Jon stayed home with the triplets until my mom and dad got here. In the ER, he was examined by the doctor and had an IV put in. The ER doctor had consulted with the children's neurologist and they suspected that all the falls that he had over the last 3 days were small seizures. It took everything in me to not break down and loose it. We were moved from the ER to the Pediatrics floor after about 4 hours. Jon and I both stayed with Jacob overnight, while mom and dad where taking care of the triplets. We saw the neurologist that night and his initial diagnosis was genetic Epilepsy. That night I took a break to get a bottle of water and it was the first time that day I'd been by myself. I remember thinking - is this really happening? Are we really here right now? Jacob was perfectly fine 4 days ago and now he has Epilepsy. It was all to much. There was too much information to wrap my brain around. Jacob had an EEG Thursday morning and an MRI in the afternoon. The EEG showed definite seizure activity in his brain and the MRI showed 2 spots on his brain. This was not the news we were hoping for. The doctor didn't know why, how or when these spots showed up. They could or could not be related to the seizures. There was no explanation. All he knew was that it was not a tumor or anything like that. The neurologist requested an opthamologist look at Jacob's eyes and that he have a spinal tap. Again, way too overwhelming. We spent another night at the hospital and Friday morning he had a few more falling incidents in the kid's play area. At 10am they dilated Jacob's eyes for the eye exam and at about 10:45 Jacob had another full seizure. Jon's parents, his nurse and Jon and I were all there with him. This one was similar to the first one, lasting about 50 seconds. They gave him some sedative-type medication to relax him for the eye exam. The opthamologist said Jacob's eyes were perfect and did not show any abnormalities - great news. At 11:00 he had his spinal tap, which he was under anesthesia for. The doctor was hoping to not see any protein in his fluid, which he did not. Again, great news. The neurologist said at this point, everything we could rule out was good news. He was hoping to not find anything. We stayed over one more night and were discharged on Saturday July 25th. Jacob started seizure medication called Depakote, which appears to be working. He has been seizure free since July 24th - praise God! Jon was able to stay home almost that entire week we were home. Of course, we were on edge and watching Jacob closely. But, day by day, he's been doing great. I think it took me a full 7 days after his first seizure to make it the whole day without shedding a tear. I can't even begin to go into the emotional side of this whole thing. It would take too many words to explain. At this point, we are just extremely thankful that the medication appears to be working and that it's almost been 2 weeks with no seizure activity. He had a blood draw this week which will monitor the medication in his blood stream and we have another follow-up appointment with his neurologist at the end of the month. My son has a neurologist. I never thought I'd have to say that. I know there are so many other worse things that could have happened and still could, so we are trying to stay positive and value every second we have as a family.

I want to thank everyone for their prayers and thoughts for Jacob and our entire family over the past 2 weeks. Your love and support kept us going when we were at the lowest of lows. We are overwhelmed with the wonderful family and friends we have and their willingness to help, pray, bring food, do laundry, etc. We are truly blessed!

Jon and Lisa

Gilroy Gardens

Yesterday we went to Gilroy Gardens (formerly Bonfante Gardens) with Grandma Lynnie and Papa Tom. It was so much fun! This theme park is perfect for our aged kids. They could ride almost every ride, some even by themselves. It took Jacob a few rides to warm up, but once we rode the train, he was ready for more. I think Jacob would have rode the train all day, he loved it! Ryan loved all the rides and did great all day! He was so cute raising his arms up on one of the kiddie roller coasters! It was a super hot day, but we kept lots of drinks and ice cream going! A huge thank you to Grandma and Papa for going with us and having lots of fun!!

Let's roll!

"Look, it's just like the merry-go-round on Mary Poppins!" (according to Jacob)

Where is that darn train?


Papa and Megan



Lunch time!
(Please don't judge me for putting their food directly on the table - it was SO hot and they were cranky and ready for lunch!)



Daddy and Megan cooling off in the water park!

Daddy and Jacob

Go Dylan!

Grandma and Jakey on the "roller coaster"

Look mom, no hands! (Daddy and Ryan)

Start your engines!

I want the pink car!

This car was too hot for Dylan - it was burning his arms - ouch!

Future Firemen!