Finally home!

After a very long day, we finally made it home late last night. We checked out of our hotel about 11:00 and traveled back up to Minneapolis. We decided to hit up the Mall of America, and oh my gosh! What a place that was! It had an in-door Nickelodeon amusement park, an Aquarium, a miniature golf course, tons of restaurants and of course tons and tons of stores. I think it was 3 or 4 stories high. Totally insane! Jacob did a few rides in the amusement park and we saw Dora and Diego. We ate lunch at Johnny Rockets and did a little shopping for Megan, Ryan and Dylan.

We left the mall around 4:00 and headed back to the airport. We got our rental car returned and checked in with minimal troubles... oh, besides the fact that Jon forgot he had a water bottle in his backpack and apparently he looks like a terrorist so his bag got searched and they tested the water. It was kind of annoying, but hey, they're doing their job. We got to our gate and about an hour we were off to Denver. Jacob did great on the flight, but I could tell he was getting tired. He slept most of the flight from Denver to Sacramento which was nice. Once in Sac, we got back to Jon's car in the parking lot and it had a dead battery. At midnight. With no jumper cables. Nice. Thankfully another lady had the same problem and her tow truck was driving by our car so we flagged it down and he helped us free of charge. Thank you Lord! We got home around 12:45 and everyone passed out. Aunt Amy and Grandma A. helped the triplets make a "welcome home" sign for Jacob (below). It was so adorable and Jacob was really excited to see it. We got up this morning and picked up the little kids from my parents house. We were all so happy to see each other! It felt like forever since we'd seen them. We spent the morning and early afternoon swimming and just hanging out.

Now we are in to the waiting game. It should be 3-4 weeks before we hear back from the doctor on the remainder of the blood work. My stomach is nervous just typing those words. It's going to be a long few weeks. We'll be praying for good results, for calm stomachs, for peace of mind and for sleep-filled nights.

final appt with the doctor

We had out final appointment with Dr. Wirrell today. Unfortunately it wasn't quite the results we were hoping for. Jacob's MRI yesterday showed a small progression in the white brain matter and a slight change in brain size (smaller). This is how it works - there are cells in the brain and each cell is connected by a wire. The white brain matter insulates those wires to protect them from damage. When there is a white brain matter abnormality (like Jacob) the matter is deteriorating, or disappearing, and not protecting the wire. So the decreasing white matter causes the brain to shrink. Jacob's head circumference is normal, so the shrinkage has been very minimal, but enough to "cause concern", as the radiologist said. The spinal tap, CBC, liver panel and a bunch of other blood tests were normal. What this means is that it opens back up the possibility of him falling into that first category I posted about the other day... the Progressive Leukodystrophy. Jacob had another blood draw today. She is now testing for Krabbe's and Metachromatic Leukodystrophy. Don't look it up online. I just did and I had to close it before I even opened the first page. These are the two big diseases that need to be ruled out. She's also running an enzyme analysis. All these labs, in addition to the bigger ones from yesterday, will take 3-4 weeks to come back. So even though we've gotten some additional information here at Mayo, we do not have a diagnosis yet. It's frustrating, but I know we are getting closer. She wants us to do a few follow up tests when we get back home and those will rule out a few more things. Jacob has really been a trooper through this whole thing. All he wants to do is go swimming in the pool!

Jon and I are doing good. Just trying to make sense of all the information. It's hard leaving here and still not sure what's going on, but we know we're getting closer. We'll be heading out first thing tomorrow and will hit up the Mall of America, then on to the airport for our flight around 7:00.

Megan, Ryan and Dylan are now with my mom and dad. They are doing great. We got to video chat with them last night and this morning through Skype. It was so neat to see them, they felt so far away!

Jon, Jacob and I just want to say thank you to all our family and friends out there. We have felt your love, support and prayers all week and it truly has helped us get through this tough week. We are so blessed to be surrounding by such loving and caring people!

Ok, here come the tears again... I'm going to close this up and meet up with Jon and Jacob at the pool! I promised Jacob I'd go down the dolphin slide with him again before we left. I'll post a follow-up once we're back home on Sunday.

Spinal tap and MRI

We checked in to St. Mary's Hospital this morning at 9:00 for Jacob's spinal tap, some blood work and an MRI. He was under anesthesia for the entire process. The spinal and blood draw were first and Jacob did great. Then he had to wait about an hour before they took him down to get his MRI, which took another 2 hours. The surgical staff was good about keeping us informed with what was going on, but it was still difficult to sit in a waiting room for hours on end when your child is going through all that. Finally at 3:30 we were called back to see Jacob. He was awake, but really out of it. After about 30-45 minutes, he got his IV out and we were able to head back to the hotel. It's now a little after 6:00 and he's had 2 cereal bars and something to drink. He is still unstable on his feet, but that is normal since he was under for over 3 hours.

Tomorrow will be our last day at the clinic. He has a follow-up appointment at 1:30 with Dr. Wirrell. She'll be giving us the MRI results as well as some preliminary blood work results too. Some of the larger tests (the chromosomal and genetic stuff) will take 3-4 weeks to come back. We originally had a 24-hr Epilepsy monitor appointment, but the doctor cancelled that (thankfully!).

We'll head back to Minneapolis first thing Saturday morning and may tackle some things at the Mall of America. They have a Nickelodeon amusement park and an aquarium we might take a look at. We'll see! Then our flight is at 7:00pm that night. Then it's back home to see the little kids! We are missing them SO much! Tonight they are with my good friend Angie and her two kids. I know they are having a great time!

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!