Made it to Seattle

Hi all, after a long day we finally made it to Seattle.  It started out by waking up and then seeing snow coming down, never a good start to a road trip day.  We were ready (I loaded the car the night before so we could leave by 8am), but we had to wait for my Mom and Sister to get out to us so we could leave.  Unfortunately they had tire issues, so they did not make it out to us until 11am.  I guess it was a good test to my new motto that I have learned "be flexible".  Luckily our weather was only snow until we got out of Caldwell, and then it turned to just wet.  It was a pretty uneventful drive and we made it over the blues with some snow, but none on the road and we even stopped in Richland to have a quick visit with my Uncle Roger, Aunt Carol and cousin Scott.  We had a nice dinner with them and enjoyed seeing them, even though it was quick, and then headed on our way for the rest of our trip.  We made it into Seattle at about 10 pm (pst) and got settled for bed at about 12 am.  It was kind of a long night.  Jacob did not sleep all that well and woke up at about 3:45 am and did not let me get back to sleep until about 5 am.  I guess we are both going to try to take a nap today.  Our only appointment today is a neurophysc appointment, and then the fun begins tomorrow.   It is just to put a baseline on his development for them, so they know were he stands before surgery.  We will let you know what they find.

Thankful!

As we get ready to make the trek to Seattle for what I am know will be a life changing event (for all of us), I can not help but stop and think of all the friends and family that I am so grateful to have.  I don't think this is a journey I could undertake without everyone around me and all of the support you have all provided (and continue to provide).  I know that Jacob is a strong little guy, and with our help will come out of this with flying colors, but I am sure my/our strength will be tested just as much (if not maybe a bit more). 

I have to thank everyone for so much help and support.  There are so many of you, and I don't know the best way to do it, but we really appreciate everyone!  No matter what the outcome for little Jacob is I am so thankful to have him and Joshua and Rick, and even this squirmy little guy who weighed in yesterday at a whopping 15oz on his ultrasound.  We have also been blessed with so many family and friends and I am ever so thankful for all of you.

We had a care conference yesterday that my Mom set up with various therapists, doctors, home care nurses and such that have been/might be involved in Jacob's rehab and as it turns out we may need to be in Seattle for a little more time than originally anticipated to get all of the therapy Jacob may need in the beginning.  I guess we will figure it out as it comes along.  I am going to miss everyone that we will not see for a while, but hopefully when we get back, Jacob will be almost as good as new and on his way to a fresh start at being a kid with NO seizures!  I want to send all of my love out to everyone and know that I will be thinking of you all, even while being ever consumed with Jacob's situation.  I promise to keep updating constantly, as it will be helpful for me to tell all of you how he is doing.

All my love and Thanks! 
Meghan

Lending a helping hand

Hello Wilkison friends & family:  With Rick and Meghan's permission, we are hijacking their blog for a little while.  We know that many of you are probably wondering how to help the family during the upcoming  surgery and recovery.  We've consulted with Rick and Meghan and talked to the Ronald McDonald house in Seattle and we have some suggestions for any of you who want to help. 

1.  Alaska Airlines gift cards:  Rick will be traveling back and forth during the four weeks that Meghan and Jacob will be in Seattle.  There will also be future travel needed for check-ups and other doctor appointments.  You can purchase gift cards online at http://www.alaskaair.com/certificates/.

2.  Gift cards for incidentals:  The family will have some food and other miscellaneous expenses while in Seattle and we know that there is a Safeway grocery store near the Ronald McDonald House.  We also suggest Target or other gift cards for incidentals and maybe some toys for both boys to provide some cheerfulness and keep them distracted during this hectic time.  According to our sources, Josh likes Legos and Jacob likes books.

3.  Help in Boise:  Rick and Josh will be on their own for several weeks and after the surgery there will be numerous trips for therapy visits so we'd encourage folks to arrange for cleaning services to help the family out.  It looks like there are a few options in Boise (Merry Maids, Happy Homes Maids) but if any of you Boise-ites have suggestions, please let us know.  We'd also suggest some gift cards for restaurants in their area including Smoky Mountain Pizza, Great Wall, Chili's, Applebee's, Whitewater Pizza & Pasta, Cucina diPaolo, and Dinner Thyme Solutions.

4.  Gas cards:  The family will be driving out to Seattle so if you'd like to purchase gas cards they often use Chevron and Shell. 

5.  Starbucks!  Meghan will be spending long hours and late nights in the hospital.  'Nuff said. 

Other ideas:  The family will hopefully be staying at the Ronald McDonald house, but if there isn't room at that time, they will probably have some lodging expenses.  We'll keep you posted.  Also, the Children's Hospital in Seattle does not accept flower deliveries and the Ronald McDonald House discourages it, along with fruit baskets.  They said that most people aren't in the house for long enough periods to eat the fruit and enjoy the flowers. 

If you have any questions or other ideas on how to help, please feel free to contact us (Glenn and Lucy Pauley) at (307) 637-6034 or email at lhpauley1@hotmail.com.   If you'd like to let us know what you want to contribute, we can keep track so that they don't end up with 200 Starbucks giftcards, but maybe that's what Meghan wants... Feel free to email us or leave a note in the comments section.  Also, please send this information along to anyone who might be interested in helping. 

Thank you in advance for your help!!  We hope that we can make the next few months a little easier on Rick, Meghan, Josh, Jacob and Baby Jingleheimerschmidt.

Skunked Again?

I had decided that since Jacob's hair was likely to get shaved in a month anyway, that I would just not pay to get it cut, so I have been trimming it up here and there to keep it out of his eyes and off his ears.  It is starting to prove to be a bit wild and hard to keep under control though, I may have to break down and take the electric trimmer to it, so I don't have to wet it down and gel it everyday. 

Jacob started doing some tumble time classes to increase his strength and stability in his walking about a month ago and just loves to bounce on the trampoline.  I do think it has helped get him more stable and I figure the stronger we can get before surgery the better.

Well, we spent another Saturday on the ice doing some ice, but this time we decided to try Magic Reservoir over by Fairfield. We had got reports that the fishing was good, so what the heck we went to give it a try. We met friends Kevin, Angie, & Laney over there and got poles on the water, but talking to others around us it sounded like things were a bit slow.  I had my pole in the water for about 5 minutes when I got a phone call from my sister, so I answered it, wouldn't you know it, that is when I got a fish on.  Unfortunately, because I was on the phone though, I lost the fish.  I took a lot of flack over that one, because as it turns out, that was the only bite any of us had all day.  Josh decided he would rather amuse himself sledding down the hill next to the reservoir with a new Friend, and Jacob went from laying on the ice and rolling around to occasionally being content to just sit and watch.  All in all he didn't complain quite as much as he did the week before. By the time we left though, he gave up and just passed out riding back to the truck in the sled.

 

The rest of our plans for Seattle are still coming along, with a few minor changes here and there.  We decided that Joshua was going to have to stay in Seattle with Jacob and I (and my mom), because as it turns out with spring break falling at the end of March he would only be in school for about a week, so we would end up paying for a month of school and he would only get a weeks worth of time out of it. Rick would also have had more trouble trying to find places for Josh to go after school was over in order to be able to get his work done, so it seems to make more sense to leave Josh with my mom and I. Any way, other than that Jacob's seizure have seemed to be increasing a bit, so his doctor raised the medication a bit.  So between the medicine and his increase in seizures, he has been a bit cranky and hard to deal with.  I have had a few more "moments" lately that I was not sure I could keep things together, but hopefully when he gets used to the increase and maybe it will start working and the seizures will decrease he will become a sweet boy again (please pray that I can hold it togeter till then).      

In other news

Well not much news on the trip to Seattle except that they have scheduled his neurophsyc (development) test for the 8th of March, so we will be leaving Boise and driving up on Monday the 7th.  We are still trying to make arrangements as far as the other stuff goes, but I am sure it will all get figured out OK.  We will all drive up together and my Mom will follow in her car, and I believe Rick's Mom will fly up and meet us there, but then Rick and Josh (and Rick's Mom) will make their way back home at some point and leave my Mom, myself and Jacob in Seattle.  Jacob is supposed to be in ICU for the first couple of days after the surgery and then in the hospital for an additional, but then they say they will want him in inpatient rehab for up to 3 weeks after surgery.  I am still trying to figure out what all of that means for lodging and stuff, but I guess it will all work out.  Rick and Josh will probably drive back on weekends or at least one or two times, so that should be interesting for Josh (I guess it is good that the Durango is equipped with DVD player). As more gets figured out we will let everyone know. 

Last weekend we decided to get out and go try out the ice fishing in Cascade.  The fishing was very slow and I ended up taking Jacob back top the truck after only an hour or so, because he did not think much of the whole ice fishing experience.  In fact the only time he was happy was when he decided to sit down and eat the snow (which didn't last too long).

After a few hours and only one small perch that they threw back, Josh and Rick packed it in too and we decided to head to McCall to catch part of the winter carnival and get some dinner.  Josh loved seeing the ice sculptures and would have been happy to wander around in the dark most of the night looking for them I think, but we had to settle on seeing the most popular ones before getting something to eat and making the trek home.  I think everyone had a pretty good time (maybe some more than others) and  we will have to plan to try to get up again before it is over. Hopefully if we try the ice fishing again though it will have improved.

I did say though that there was other news, and that really was not it.  This news may come as a shock to some (it did catch Rick and I off guard), but we have know for a little while we were just waiting for tests to come back (which by the way were all good!) and the right time to break the news.  So here it is:  in July we are expecting another baby boy.  The due date it July 11, but as long as I have him before the 17th (my 40th birthday) I will be happy.  I always said I did not want to be a mother having a baby when I was 40, so that is why (I know there are those of you out there saying "well it is close enough", but I think I need to still be 39).  So there you go, we thought we were done, but I guess I never should have joked about having a backup in case anything ever happened, because someone decided they needed to grant that one.  I guess the surgery was not enough for me to have to think about, we had to throw a new baby in the mix as well.  All kidding aside it is a welcome addition, we will jut have to reconfigure the rooms a bit (I am having a bit more trouble with that because I don't want to give up my office or my guest room).  We did finally tell Josh and he is up for having a new brother, so that is good.  Any way, that is all the news for now.

Finally, A Plan!

I just thought I would give a quick update: We have a date set for Jacob's Hemispherectomy. He will be having the surgery on March 10th, with a lot of pre-op stuff on the 9th. We will be in Seattle for probably at least 3 weeks, so we definitely have some planning to do. They have more appointments to set as of yet, but they will work them around the surgery stuff. I am just glad we have a direction to go and am sure we will have plenty of guidance as we go. It is all a bit scary to think about if I think for too long, but am happy to be moving forward.

A New Year Upon Us

Happy New Year! I thought for sure I would have posted more in December, but time got away from me, yet again.
Last I left off we had a snow day. We decided to make good use of all of that snow we shovelled out of our huge driveway and turned it into our very own sledding hill. It worked out pretty good for a few days, then the weather warmed up & it melted down to a small pile of snow. It was fun while it lasted, and no one got hurt.


Christmas was quite an event. Josh was very excited to see what Santa was going to bring him and could hardly go to sleep. At last we convinced him that Santa does not come when little boys are still awake and he finally made his way into bed. Jacob however, cared less. He got a bad stomach flu (that Josh had the week before) and all he wanted to do was sleep. He had trouble keeping much of his food down (in fact threw up-to the horror of mall shoppers- while we were in Williams Sanoma a day or two before that). He did not even wake up until 10:30 am on Christmas day, which made it hard for Josh to control his urge to just open presents. We were able to get very little reaction to gifts before he decided he just wanted to go back to bed. So we did not force him to open any more.

We enjoyed New Years eve letting Joshua stay up until after midnight to ring in the New Year with us (Jacob only stayed up until 11:30). We then had New Years day dinner with my family and "finished" Christmas.

On January 2nd, we of course celebrated Josh's birthday. He was very excited to finally say that he was actually 5 years old that day. I made him his own truck cake (my first ever creative baking challenge) and he also opened all of his presents (of the big ones, he got his very own Motorcycle-gas engine-which he found out in the shed under a tarp a week before Christmas). After the presents were opened and everyone left he then asked me why he did not get more presents?! I just looked at him and said "How many did you expect? and what about that Motorcycle you have out in the garage?" I guess it is time to start working on the knowing when you have enough and others in this world have a lot less than us lessons a little harder.

All in all the holidays were good for us.

But now that it is a New Year I vowed to get on the phone and to start bugging the doctors in Seattle to get some things going. So Monday morning I called and left a message saying I wanted to know what we needed to do to get something done for Jacob. Later that day, I got a call back, the nurse in charge of Jacob's case told me they were no longer pursuing the genetics testing because they had come to decide (with the help of the genetics lab) that the tests were unnecessary. They also told me that any additional test needed could probably be done there and she confirmed that we wanted to pursue surgery and told me she would see what the doctors said and would call me back. She called yesterday and told me that both the neurosurgeon and the epilepsy doctor had said they wanted to put him on the schedule for surgery. So there we have it, I guess a little bugging goes a long way sometimes. They are looking into getting him in for the left hemispherectomy in March. We should hear back in a couple of day on the exact date, but we now have a plan. I am both elated and scared to death. I don't know what exactly to expect, but am sure that there is a greater plan for Jacob and that all things happen for a reason. So here is to hoping and praying for the best of all outcomes.

This last picture I threw in just because I thought it was funny. Rick looks like a little boy in this huge chair at Cabelas. This is supposed to be a three person chair with 6 drink holders, but I don't think I know anyone that would want to sit in a chair like that with 2 other people.

I promise to update as soon as I have any news on any dates.