update

Today we saw Dr. Wirrell, a child neurologist at the clinic. After she had a chance to review all of Jacob's records and prior MRI's, we talked a lot about his development, his seizures and the white brain matter abnormalities. She agreed with all of the work up done by our local doctor and was pleased at how thorough he has been.

EEG - The results of yesterday's EEG were normal, which was great news. The only thing to note was that Jacob's anti-seizure medication could be working so well that it is completely blocking all the possible seizure activity. The only way to truly know there is no seizure activity is to take him off the meds and repeat the EEG, which we'll do once he's been seizure free for 2 years (1 more year to go).

Development - The white brain matter has caused Jacob to struggle with language, fine and gross motor skills and social skills. The doctor agreed with all the assessment we've already had done on Jacob and agreed that speech and language therapy and occupational therapy will help mature those skills. Jacob's overall level is more of a 3-4 year old, more likely on the 3 side.

White brain matter abnormality - This is the main reason we took Jacob to Mayo. The doctor explained to us that there are 3 diagnosis for white matter abnormalities: progressive Leukoenuphaloparnye (good luck saying that one!), demyelinating and non-progressive. The progressive Leuko would be if we saw deterioration in Jacob. For example, he could walk one day and then the next he couldn't. Or he could talk one day and then not the next... A very sudden deterioration. We have not seen this at all (thankfully). There is one additional lab test she will run on him to rule this diagnosis out. This is the worst one of the three with an outcome I don't even want to think about. The second - demyelinating - relates to Multiple Sclerosis and ADEM. Again, this has to do with the deterioration, but this is a little different in that it would be an up and down deterioration... he can walk one day, but not the next, but then he could again the next day. This is definitely out for Jacob. She feels there are no signs or symptoms of MS or anything else in this category. So that leaves the non-progressive white matter. This is the most common diagnosis and if you're going to have any one of the three, this is the one you want to have. This has usually occur ed due to some sort of insult or injury to the brain. In most cases, the person was born prematurely. This is not true for Jacob. Some times it can be genetic and/or somehow related to his immune system. If this is the type of abnormality he has, there is no "fix" for it. He will always have it. It's kind of like a scar - it will always be there, but it's up to us to know how to help him along the way (therapies, Neuropsychology, etc).

So, what now? Well, tomorrow he'll have another MRI. The doc wants to verify there has been no progression in the white matter since it has been 1 year since the first one. He'll have another spinal tap. He'll have blood drawn to test for some chromosomal and genetic things, as well as test his immune system. He'll be under anesthesia for all of it. We check in to St. Mary's Hospital at 9:30 and should be done by 12:30 (our time - 2 hrs ahead of CA time).

Here is Jon sitting with Dr. William Mayo and his brother (also a doctor but I don't remember his name!) who founded the Mayo Clinic.

More tomorrow!

Swimming

We swam twice yesterday at the hotel pool. It's a really neat pool totally designed for kids. It's one of the reasons I picked this hotel. It has a kids wading pool only 2 ft deep with 2 water spray features and a lion's mouth slide. Perfect for Jacob. They also have a larger pool 5 feet deep with a big dolphin water slide. Oh, and don't forget the hot tub! There are a lot of kids staying here and Jacob has made a few little friends. We met a family with 1-yr-old twins and a 3-yr-old big brother. Of course, we started chatting with them! We also met a really nice family from Nebraska. They are here with their 4-yr-old Carson. He is being seen at Mayo because last year he had a brain tumor and had brain surgery. My eyes well up with tears just thinking about something like that. He is such a sweet and adorable little boy! He doesn't really talk. Mom says he only says a handful of words. Him and Jacob have a lot in common... speech and language therapy, IEP's, developmental delays, behavior issues, they both LOVE swimming, etc. It was great to talk with another mom who knew exactly what you've been going through. They are here all week too so I'm sure we'll get more opportunities to chat with them.

We'll be heading to the clinic in about 2 hours. Jon and I are doing well. Just trying to find fun things to do to keep busy. I even got a 2 hour nap in yesterday! I can't remember the last time that happened! Oh, and did I mention we all got up at 9:20 this morning?? I guess we needed to catch up on some sleep. We've been talking to Fran and Amy every day... some times twice a day. Megan, Ryan and Dylan are doing great at home. Enjoying playing in the backyard, going to the park and keeping daddy's plants watered. I miss them so much! We've talked to them each night before bedtime and their little voices seem so far away! Lots of "I love you's" and "miss you's" but they sound like they are doing great. Keep up the good work Grandma and Auntie! Love you guys!!

I'll post more later today after our visit with the doctor. This is the appointment I'm most nervous about. She'll review all the medical info we have and either tell us what's wrong or recommend further testing. Keep those prayers coming! Thanks everyone, we are feeling your love and support!

EEG

Jacob had his EEG today. He did awesome! They wanted him to be sleep deprived so we kept him up until midnight and got up about 7:45. That's a normal night sleep for me and Jon, but for Jacob that was a good few hours less than normal. We checked in to Mayo and got right in for our appointment. The lady put a cap over Jacob's head (kinda like a swim cap) that had electrodes built in the cap. Then she started to monitor him. They wanted to catch his brain waves while he slept (hence the sleep deprivation) and it actually worked! Jacob feel asleep watching a movie and slept for an hour! Exactly what they wanted. We don't know any results yet. We meet with the doctor tomorrow and hope to find out some results then. We just finished eating lunch at Panera Bread... thank you for the free WiFi! Now we have the rest of the day free... maybe hitting up Sam's Club (gotta check out the competition!) and then back to the hotel for swimming.

More later...

We made it!

Whew! What a day! We left our house at 8:30 this morning to catch an 11:00 flight out of Sac Intl. Jacob was really excited while we waited for the parking lot bus. We could see airplanes taking off right over us! We got through check-in and security with no problems. At our gate we watched the plane come in and the pilot started waving to Jacob through the window. He waved back and was super excited. As we were boarding the plane, the pilot said to Jacob, "were you the little guy I was waving too?" Jacob said yes and then the pilot asked him if he wanted to sit in the cockpit! Jacob thought that was pretty cool. Then it was on to Denver and then to Minneapolis. Jacob did good, just a little restless at times.

We picked up our rental car and headed down to Rochester (about an hour and a half). We drove through St. Paul and over the Mississippi River! The trek down Hwy 52 was very green, tons of corn fields, tons of Dairy Queens and not much else!

Our hotel is working out great. We have a 1 bedroom suite with a full kitchen (with granite counter tops and hard wood floors even!), 2 flat screen tv's and HD! Nicer than our house! We hit up the local Applebee's and Super Walmart for some groceries and now Jacob is finally in bed. We're 2 hours ahead here, so even though it's midnight, it's really is 10:00 to us. Jacob has an EEG scheduled tomorrow and they want him to come in sleep deprived, which means stay up late and get up early. We'll see about the get up early part! :o) The EEG is a monitor of Jacob's brain waves by using electrodes stuck to his head. He has had this done before. It is not painful to him, just a bit annoying. It should take an hour or two.

Well, that's it for now. I'll update tomorrow after the EEG. Nighty-night!

Mayo Clinic

Jon, Jacob and I will be leaving Monday morning for the Mayo Clinic in Rochester, MN. We fly from Sac to Denver, then on to Minneapolis. From there, we'll drive about an hour and a half down to Rochester. Our appointments will start Tuesday with an EEG and then we'll see a doctor on Wednesday. We'll show her all of Jacob's MRI's, blood work and medical records and then she'll decide what other tests he'll have done. (possibly another MRI, spinal tap, more blood work and a 24 hr epilepsy monitor).

I will try to keep my blog up to date with information throughout the week. We're keeping every finger and toe crossed for our little guy!

the dentist

The triplets had their first dentist appointment yesterday. It went really well. Everyone got their teeth cleaned and counted. They all got a new Cars and Snow White toothbrushes as well as balloons. As a special treat we took the kids to Jamba Juice. Overall it was a good morning and I hope a good experience for them so that future dental appointments will continue to be good!

Potty training and new rooms

We're making attempt #2 to potty train the little boys (Ryan and Dylan). Megan has been potty trained for the last few months and the boys are showing a renewed interest in the potty again. So we're back in undies and doing lots of laundry. I'm really hoping to get them trained by the summer. It would be so great to use our diaper money to do something fun with this summer!

Another transition is moving some rooms around. The triplets have been sharing a room since day 1, well since the true day 1 in the womb! But they have decided it's more fun to goof around than nap and go to sleep at night. So we're going to move Jacob downstairs and then give Megan Jacob's room. R&D will stay in their current room. I'm really excited about this because I get to decorate a girls room!! We'll also change up R&D's room to more of a boy room. Should be fun. We've been doing a ton of painting around our house in our spare time... usually after the kids are in bed. Just trying to get the place to feel more like home.