Dada, Dad!

This morning Rick told me that he woke up to Jacob looking at him from his crib and saying Dada, Dad!  He has said he can count on one hand how many times he has heard Jacob say that (and that was before his surgery).  He seems to be back to being the old happy Jacob, that I remember from before he had a lot of seizure.  The main difference is that this time he is doing things that he may have done inconsistently before, but with meaning and consistency now.  I have been told that kids with left hemispherectomy's typically have a big delay in their speech development, and not to be surprised if he did not talk for a very long time.  I have a feeling now, that Jacob is going to decide to prove that theory a bit wrong.   He may not be speaking in full sentences by the time he is 3, but I have a feeling we will be hearing a lot of words out of him.  He has also started today to do a lot of signs that he did before, but inconsistently, and some that I used with him and he had never done. (As I write this, he is sitting on my lap, he has decided not to go too sleep yet, because he fell asleep too early and then woke up, and waving at the computer.  I think he must be trying to tell me to turn it off.)  He also had another good day of therapy, and we even heard a rumor that they had been talking about an even earlier release.  Tomorrow is his team meeting and we will see what they say, we might even get to be let out on a day pass this weekend. 
Jacob's Epilepsy Doctor came in today also with the news that they are going to start switching his medicines starting today.  We are adding Topomax in right now, but in a week will start weening him off of the Vigabatrin.  We also liked that news.  We did not really like the way the Vigabatrin made Jacob feel, and he has been on the topomax before and seemed to handle it pretty well.  They say that if he stays seizure free, in a year or so, we can think about taking him off all of the meds :) So far, so good.  Two weeks down (or has it been 3? lol), Fifty two (or so) to go! 

I am afraid the only photo I have to add today is of our friend Waldo on the construction site.  We found him this morning on the standing on the dump trucks, again he was a bit easy to find, but I guess you can only hide so many places on a construction site when there is mostly dirt around. 

Well, I better make one more attempt to get Jacob to bed (especially since it is almost midnight here), he is making it difficult to type (keeps trying to help me), and who knows if he will decide to sleep in past 7:30 or so.

He's Come a Long Way

It is hard to believe that about a week and a half ago I was a bit stressed because I was not sure that Jacob was going to get enough time in rehab.  We were so sure that to short him any less than 6 weeks would be a disgrace because that is what he was really supposed to be needing.  I look at him today and I am so impressed with how far he has come in such short of time, that I am not worried about him anymore.  He is strong willed and stubborn for sure, but I think that is working in his favour now.  Every day he seems to be improving so much more than the day before.  Like with the sitting up thing, last week we were so impressed that he sat by himself for a minute without falling.  This week, I have hardly any worries of him falling at all.  It is like he is back to his old self of sitting like a pro.  Then there is the walking thing, a few days ago I would never have guessed that he would be trying to walk, and suddenly today, having so much stamina that he could walk all the way from the gym to our room without giving up, even though he was tired. 

He is also doing more and more babbling all of the time.  He is almost doing more babbling and making more word like sounds, that I am think he is going to surpass were he was even before in speech, in the next few days.  I have great hopes now for the next few weeks.  I am sure he is going to come back a new kid. 

I have talked a little about the construction that Joshua, and Jacob at times has watched from our windows while we have been at Seattle Children's Hospital, but I did not talk about one piece of that construction that has been of interest to the rest of us.  When we first got there, we saw a sign that said "Waldo is on Vacation".  We had an idea of what that might have meant, but we weren't completely sure until today.  Waldo is back.  Today he was pretty easy to find (although it was funny how many nurses did not find him right away), but we will have to see were he ends up tomorrow.  That is him in the 4 wheel vehicle waving at everyone.  Apparently he has been missed, so we are glad he is back.  Now tomorrow we can play Where's Waldo.   

Another Weekend (and a day) Gone By

It was another light therapy weekend here in Seattle, and it gave us another chance to get all rested up for another big week.  Jacob is getting more and more animated with every day that goes by and he is getting more and more happy too.  He also has started to babble again and we even got him saying Yum Yum while he was eating this weekend.  

Joshua has decided that he is going to be as therapist when he grows up and has been having fun doing the things the (mostly speech) therapist has been doing with Jacob.  He continues to be a big help to the therapy because Jacob loves to watch his brother and imitate him on things.  He has even made an attempt to get up and try to get to Josh (I think forgetting that not everything goes with him as easily as it used too). 

Last week they measured Jacob for a splint to wear on his right foot, to give him a bit more support when he is trying to walk and today it came.  He tried it on and started walking with it.  He did really well!  They had to help him with positioning his right leg and some stability of course, but it was amazing how quickly he took to it with just a bit of help (and not much complaining).

 Josh has his moments when he is a bit difficult or wants to go do something else, which I really can't blame him for, especially considering he is only 5, but I am so proud of how well he has helped out with Jacob and endured the long hours at the hospital at times.  All of the nurses have taken to both Joshua and Jacob and they all seem very impressed with Josh's big brother skills.  Josh has even been busy sweet talking some of the ladies at the Ronald McDonald house.  Saturday one of the ladies took him to the "secret toy closet" and let him pick out a toy.  He of course picked out a remote control front loader (which is appropriate because every day he watches the construction outside Jacob's window).  So far he has carried it back and forth from the hospital every single day.  Today he even let Jacob try out the controls, which he was a bit hesitant about yesterday.  

Tomorrow I am sure we will do some more walking and I will be sure and take my camera for this time.  For tonight I will say goodnight.  Hopefully I will sleep better here at the hospital than I did Saturday night.  I can't say that the sleeper sofa is the most comfortable thing, but also, little Pee Wee number 3 has been waking up at those midnight hours and moving around a lot.  Oh well, only a few more weeks of the sleeper sofa to go, LOL! 

Upgraded to the stroller

We had another good day of therapy and just like the days before when Jacob has done something the next day he does it better and longer.  He stood for a quite  a while by himself today and the therapist only sat behind him many times without having to hold him steady.  He still has not used his right hand much, but they say that comes last usually.     Jacob was given permission today to graduate from his little wheel chair to our umbrella stroller and it was another nice day in Seattle so, after all of the therapy was done we decided to go outside.  We first sat on one of the patios and hung out, but the sun was on the other side of the building, so we decided to try and find the park they said was close by.   We never did find the park, but we did find a nice area that had a little pond that we sat and watched some ducks at until we thought we better head back. 

When we got back we fed Jacob his dinner and as you can see in this photo his chipmunk cheeks are still with us, but his steroid is done.  Hopefully we will not be so puffy for too much longer.
After Jacob ate we said our good nights (because my Mom is staying with him tonight) and Jacob decided he needed to have a short wrestling match on Dad's lap with Josh and try and kiss him.  It was very cute.  We left him to get some rest (he has decided while here in Seattle that he only need short naps during the day) and we went to get dinner and go get ourselves ready for bed. 

Tomorrow is only a short day of therapy and my Mom is heading back to Boise this weekend, so Rick and I will be trading off staying with Jacob for the next week. 
It is good to see so much more of the old Jacob coming back.  I have to admit, I was a bit worried the flat affect Jacob was going to stay a while, and I would rather have the complaining Jacob than that one (of course the happy Jacob is the best one). 

Starting to Stand

Today was a big day for Jacob.  We had a big day of therapy and we also had our first team meeting with everyone involved in Jacob's rehabilitation.  We started out our morning with 2 hours of therapy instead of just 1 and a half.  I was not sure he would hold out for the last half hour, but he did.  In fact he pretty much worked on standing and side walking with the help of the therapists for the whole time.  It was pretty impressive and he did not even get that upset.  Boy was he tired though.  After the therapies we went back to his room to get him lunch and get him down for a nap.  The lunch could not come fast enough, I had trouble trying to keep him somewhat happy and awake until it got there. 

 After his nap it was time for his team meeting.   There were a lot more people in the meeting than I even expected.  The conference table was full of about a dozen people and everyone introduced themselves and shared their opinions and goals for Jacob (some he has already met, and some for the future).  We were also given a tentative check out date of April 15th (subject to change of course as re-evaluated).  It was good to hear every ones thoughts and have a goal date on the table.  Everyone seemed impressed with how far he has come in the last week.  I have also been very happy with the team of people all working towards the same goal as us and caring so deeply about my little guy.  It makes me very confident knowing the quality of people we have around us (both here in Seattle, and the people back home in Boise getting ready for us).      

Josh was able to take a day and spend it with Liz and Gary at the Aquarium.  It sounds like they had lots of fun and saw lots of aquatic life.  I am not sure, but he may have even learned a few things.  They ended the day with picking up Rick at the airport and bringing him back to the hospital.  He had already decided it was his night to stay there since he had been away for 4 days, so we let him.  Josh wanted to sleep at the hospital with him, but we told him he couldn't, so he begrudgingly came back to the Ronald McDonald House with me.  He will have plenty of time to spend with him now, because Rick decided to change their flights and both of them are going to stay in Seattle for another week (until April 4th) with Jacob and I.   All in all it was a good day in Seattle (and the sun shone most of the day again too, who would figure?) 

Joshua Day

I had promised Joshua another day at the zoo, and he has been such a trooper to hang out at the hospital as much as he has and to even help with Jacob's therapies, that I thought he deserved a "Joshua day".    We heard it was going to be a beautiful day, so we decided it would be the perfect day to go.  We had our breakfast and got our map from the RM house and my Mom stayed at the hospital with Jacob, while Joshua and I made our way to the zoo.  We got there about 10:30 am or so, and found that everyone else had the same idea for the day.  The line was incredibly long, but I had remembered when I renewed my Zoo Boise membership that there was something in it about getting into the zoo in Seattle, so we skipped the line and went looking for someone to ask.  We found the smaller membership line and waited a minute or two before I began to think that maybe that was just for buying a membership, so I asked someone in line.  She told be that it was and if we had a membership to just show it at the front gate, so I did.  First the girl asked me what city Zoo Boise was in, and then I told her Boise, and she then said "Oh, of course"  and told me we did get in free.  Yea!  So Josh and I skipped the huge line and walked right in the gates. 

We had a great time seeing a lot of animals, and walking around the zoo.  We started the day by riding the carousel, we then saw the Kangaroos and Emus, and made our way around the zoo.  At about 12:45 we realized we better get some lunch, and by that time had not even made it around even a quarter of the zoo.  We ate (outside even) and continued on.  Our next goal was to send a photo of Josh to Rick with the Gorillas.  We couldn't get them to look at us, and Josh wanted them to beat their chests, which they also would not do, but we got the photo.   We saw many, many animals and we felt like we had walked a few miles, but before we realized it we had spent the whole day there.  We almost got to see everything, but we heard the announcement that the Zoo was closing just as we had started into the Northern Trail animals (and we figured we could see those in Idaho), so we turned back to head to towards the gate.  Josh wanted to visit the gift shop before they closed and pick out a small gift for Jacob since he could not come with us, so we wanted to make sure we got there in time.  Joshua picked out a cute little snow leopard wearing a woodland park zoo vest for Jacob, and we found a little arctic fox for a little girl who was one of Jacob's roommates for a couple of days (who is going home on Friday and had really taken a liking to Jacob), and he even picked out an alligator (as seen in the boat photo) that he said he really could not live without.  I am beginning to think alligators/crocodiles are his favorite animal since he now has 3 of them.  All in all, it was a good day made just for Joshua. 

In Jacob news, he had a good day of therapies and I am told even kneeled for about 15 seconds and then stood up with very little help from the therapists for a short time. He is progressing well and hopefully will be back to using that right side before we know it.  He sure tuckered himself out though, and even went to bed early.

Tomorrow marks his first week of therapy and we have a team meeting with his doctors and therapists to talk about his goals for the next week and about how he is doing.  It should be interesting to hear.  He also has a big therapy day and he has a two week wound check (it is hard to believe it has been that long already).  I also found that with the insurance, it is not uncommon for them to approve only a week at a time, so I guess I can stop worrying about that, it is not something that is in my hands anyway, so why even sweat it.

Still cranky, but getting better

 It was my night last night to stay at the hospital with Jacob and I have to admit it makes me feel guilty when I don't stay there every night.  He loves so much to sit with me and snuggle and he gives me those sad pouty eyes and grabs at me when I have to leave (which I try not to very often).  He also looks at me like he is mad at me for a while when I come back, but I realize that I also have a five year old who does need me too, even if he is a Daddies little boy most of the time.     

Jacob seemed to have a pretty good nights sleep last night and woke up in a better mood, although very hungry again.  He did pretty good on his morning therapies, but started to act uncomfortable towards the end, and then we went back to his room where we waited for lunch.  He ate lunch, and then he took a nap, but unfortunately with the time we waited for luch and eating he did not go down until 12:40 pm and they came to get him for his afternoin therapies at 1:20 pm.  So I got to wake him up.  That went ok, but he is a slow waker uper, and so the afternoon therapies did not go quite as well and he still needed more nap after the therapy was over.  I suppose one of these days we will get this schedule thing down.  

Our friends Liz and Gary came to the hospital to hang out with us for a while, and since it was Ivar's 106 bithday, they bought us Ivars for dinner.  Josh and I went with Gary to get it, and boy was there a line, but we brought it back to the hospital and ate it with Jacob.  He had just finished all of his food (cleaned his plate again), but still eyed us all for ours, so I shared some french fries and fish with him (until I was done and then he moved on to whomever else had some left). 

My mom is staying tonight and I hope they have a restful night and he won't be too hard on me tomorrow when I show up.  He will feel better I hope when he realizes it is my night to stay tomorrow.

Rough Day

Today, Jacob woke up pretty irritable.  Josh and I got to the hospital pretty early so we could be there in case the Doctors came in because we heard they were going to be there at 7:30 am.  Of course the doctors didn't come in until around 8:15, but at least we were there in plenty of  time.  Jacob was crying and fussing because he was cranky and hungry.  He has been on a steroid ever since the surgery to prevent swelling in his brain, and it has made him extremely hungry.  He is being weened off of it and should be done with it on Wednesday, but is starting to show signs of looking like the Pillsbury dough boy and has gained 1.4 lbs in the last week and a half.  He missed his first therapy appointment at 8:30 am due to a lot of crying and him being a bit difficult taking his medicine, but I was able to get it down him and have him calmed down by his 9:00 am session.  He finished his morning therapies with a little complaining and a bit of drooling, and we decided to try giving him some Tylenol.  After that I was able to get him to take a nap and he seemed to wake up in a much better mood.  He made it through his afternoon therapies without too many complaints and we then settled for a little nap in the afternoon.  His somewhat good mood was fairly shot lived though, because he woke up form his afternoon nap and seemed irritable again.  I don't quite know why.  Maybe he is cutting some molars?  Maybe weening him off the steroid is making him cranky?  I am just not sure, and I hate that feeling.  Hopefully he will rest well tonight and tomorrow will be a better day for him (and I got them to adjust the therapy schedule so it is not quite so early for him). 

This picture is of him sitting up by himself and Josh holding his hand (taken with my phone), which is somewhat incredible considering he could not even hold himself up by himself yesterday.

Joshua was a good trooper, he hung out at the hospital all day with not much to do except schoolwork, and did not complain too much.  He even was able to help the therapists in keeping Jacob interested in what they wanted him to do at times.  He really is a good big brother and I can see Jacob looks up to him a lot. Hopefully we can get him doing something more exciting tomorrow.  I also promised one more trip to the zoo this week, so I will break away in the next couple of days and keep my promise.

Weekend of (a bit of) Rest

We started out the weekend with a bit if a grumpy Jacob, I'm guessing because he worked so hard on Friday and probably because his new neighbor had the nurses coming in every couple of hours throughout the night (and a couple of them were a bit noisy).  He had an early therapy Saturday that he did not really want to cooperate for, and then a catnap, and by his second therapy he was starting to warm up.  Lucky for him though, it was only a half day of therapies.  By Saturday evening he was feeling better and his roommate got checked out, so he and Rick had the room all to himself.  He slept all night long without interruptions.  

This morning he was still a bit grumpy, but after a little time with Rick and Myself playing, he was having a bit more fun.  The Therapists have left a lot of things for us to keep him busy for the weekend, so we did our best at getting him to play (I even took some video to show them so they don't think that he never does anything they want him too, he just does it when they are not around).  

Today, I noticed a sudden empty private room down the hall a couple doors, so I asked his nurse what you had to do to get on the list for one.  By the end of the day, they had moved him into it.   Now, no more late night move In's to worry about and no one to wake him up in the middle of the night (especially because he has been upgraded to the vital sign check only at 8am and 8pm).   

This weekend my sister Erin flew back to Seattle with her son Charlie to see us and take Josh out to get him out of the hospital some more (he had hung out with our friends Liz and Gary a bit, but we didn't want them to think they had to take him everyday).  They went to the zoo, and went to the Locks where they saw a fish ladder and he had a good time seeing his cousin.

We also seem to find some new animal somewhere in or around the hospital that Josh has to get his photo with, so this time it was the elephants by the Giraffe entrance.  It is amazing all of the things they have around the hospital to interest the kids (and some of us adults to).  I wonder how many more we will stumble upon (when we do I guarantee we will get a photo with them). 

Rick flew home tonight to check on the house and animals, and try to get in a somewhat productive work week until Thursday, although I know he regretted leaving thinking he would be more help here with us, but we will be fine for the next four days.  He has decided to take Josh back with him next weekend, so Josh can get back into a routine and be able to start school again after spring break, and I think it is a pretty good idea.  I will miss them, but hopefully we will see them soon enough, we will just have to make the most of this week and weekend till they are both gone.

First official day of rehab

 As promised I took a photo of some of the decorations that Bill and Lisa sent us.  It made our St.Patrick's day a bit more cheery!  Thanks again Bill and Lisa!

This morning Josh said we had to visit good old Ronald who is out front of the Ronald McDonald House and get a photo with him.  At least I got them all to smile, although I had to work a little harder for Ronald. 

Jacob had his first official day of rehab today, and it went pretty good.  They split it into 1 1/2 hours in the morning, let him get lunch and a nap and then 1 1/2 hours in the afternoon.  He lasted pretty well with that (they were originally afraid he wouldn't).   He also got a new way to be able to get a ride around the hospital.  They fitted him in a special size chair with wheels and he seemed to like it fairly well.  Now he does not have to lay in bed propped up to eat his food. 
The only hiccup all day was with the insurance, but I am sure it will get all resolved next week.  So far they have only approved him for one week of therapy.  As much as we would like to be home soon, we know that one week is not going to cut it.  Jacob is much too far away from being where he needs to be to go home.  So far they are saying they can most likely get the insurance to get it to at least 3 weeks and then we can go from there. So, I guess we will see what happens. 
And to end the day, he got his first bath, it was not as enjoyable as his usual baths, but I think he appreciated getting clean for the first time in over a week.  When we got back from our bath, we got to move our bed over to the side of the room with the window, because our roommate moved out.  We were pretty excited at the thought of a window view and that it looked like it might be a quite night, but then at 10:45 pm they moved in a teenage boy.  Oh well, it still might be a quite rest of the night, I suppose.

Finally Mobile and Happy St. Patrick's Day

First I have to apologize for not getting the update done last night, I got on the computer to do it and I did not have an Internet connection in the Ronald McDonald house room.  Apparently our room is a bit too far away from the wireless router (they gave me a cord to use from now on).  So hopefully from now on I will be able to stay on the update schedule that I like (at night before bed).

 For the past week Jacob has been in the giraffe section of the hospital, which has been appropriate because one of his favorite stuffed animals is a giraffe.  On Wednesday though he was able to get the drain pulled from his head and they came and told us he would probably get moved to the rehab section which is in the train section of the hospital.  I guess that is good, because now we are more mobile.  We can get him out of bed whenever we want and he does enjoy being walked around and seeing new sights.  He seemed much happier when the drain came out and Dad got to hang out with him and stay the night.  Josh and I went to stay at the Ronald McDonald house for the night. 

 We came in first thing this morning and Dad was acting so goofy, we actually got a smile out of him.  It was the first one I have seen in a week.  It is still a bit of a half smile because he is still getting used to using the right side, but we will take it either way. 

At around noon they came and got him and moved him over to his new room #3135 in the train section.  He now has a new roommate (I believe a quieter one) and a change of scenery.  Our friends Bill and Lisa also sent us some decorations for his room to make it festive for St. Patrick's day.  I will take pictures when we are done decorating and post later. 

Oh so Depressed

We went into the hospital this morning and got there just before the physical therapist and the occupational therapist came in to see Jacob.  I guess to they took him in for a chest xray this morning because he had a rattle in his chest, but luckily that turned out to be nothing and cleared up later.  He did a bit better than yesterday with the therapy, but still only lasted about 20 minutes.  He seemed pretty wiped out and as I watched him and talked to him I began to realize that he just seemed so depressed.  It made me feel very sad.  How do you tell a 2 yr old not to be depressed?  How do you make them feel better when they have to lay in a bed all day long? Especially when they don't really know what you are doing to them to begin with.

Well the good news was that today they clamped off Jacob's drain in is head to test it to see how it would do.  With the drain clamped off, we could take him out of bed more, sit him up more and just get him a bit more mobile.  At least it started out as good news.  After about a half a day of being clamped, we noticed he started leaking out of the drain.  So the nurse practitioner from neurosurgery had to come and asses the situation.  She cleaned things up a bit, put new dressing on, and noticed he had some fluid puffing on the left side and told us we had to unclamp the drain for a while.  So much for Jacob's freedom.  They unclamped the drain, and let it run at a lower pressure to take out some of that fluid and after an hour came to turn up the pressure a bit.  Jacob was doing pretty good, but by the time the changeover for the nurses came, he was leaking a bit again, so they had to turn the pressure back down a bit.  We will just have to see where it is at in the morning.  Dr. Ojemann did say that it happens often and that tomorrow the drain was going to come out regardless.  I guess what that will mean though is that we will just have to hope it does not create too much pressure in the head and cause too much fluid to be on the left side of his skull.  I guess they know what they are doing better than I do (since they are the experts, and I am not). 

I forgot to post this photo of Jacob's incision yesterday.  We were pretty impressed with the amount of hair that they left.  we even mentioned that to Dr. Ojemann and he told us that since he lost his hair a few years ago he had a lot more respect for hair now, so he liked to leave as much as he could.  I thought that was a pretty good answer.

Joshua hung out at the hospital with us pretty much most of the day and did pretty well.  He worked on his reading work for school and practiced writing out his numbers from 1 to 25 or so.  He also said that when they take out the drain to Jacob's head he will not be afraid of him or to touch him then, because I guess that is what has really been bothering him.  I suppose that is pretty good news, especially because I think Josh can help break Jacob out of his little funk.  He did go another day with eating well, but today he did not poop.  Hopefully tomorrow he will take care of that little problem.  I would hate to see him have to get another suppository. 
By the way I think I have forgottent to report that so far Jacob has not had a seizure since before he had the surgery on March 10th. :)

Poop Day!

Last night was Rick's night to stay at the hospital, so I stayed with Josh and waited until he got up this morning.  He slept in for a while and then got up and had breakfast and we took out time getting to the hospital.  I had talked to Rick and he said Jacob had a pretty good night, so we did not rush.  When we did get there I took one look at Jacob and said "what is wrong with him, he looks terrible".  He was so ashen color and so lethargic, I was worried.  I was beginning to think our luck was changing.  I asked Rick if he had gone poop yet, because he had been eating so much, and he told me he still had not.  The nurses were starting to get concerned too, so the had a suppository planned for him at noon.  So around noon they put it in and we waited.  Meanwhile Jacob fell back to sleep.  We had no idea how long it would take but we did ask questions about what we would do if it didn't work.  Luckily as we were talking about it all Jacob woke up and started to get very uncomfortable.  He then started grunting a bit and we then knew it was coming (and oh boy, did it come). As soon as we got one diaper changed, he filled another.  Immediately the color came back to his face and he had a look of relief.  He just all of the sudden seemed to feel so much better.  I truly felt better too.  I even got to get him out of bed when he managed to flip himself all of the way over on his belly in bed (while wearing a restraint on his left hand to prevent him from pulling out his drain).  I guess the nurse figured that was good cause to give him a reprieve from bed.  It was awesome because he fell asleep on my chest and did not move for about an hour.  I was happy!

After the pooping Rick actually felt better to leave and take Joshua to the top of the space needle.  They had a great time and stayed and hung out for a while and Josh got a small space needle to take home and carried it everywhere the rest of the night.  He even felt he needed to sleep with it, but we convinced him to put it next to him. 

My Mom decided she wanted to take tonight's shift to give Rick and I a break, so we let her.  We will see what tomorrow brings. 

March 13

We had another pretty good day, although Jacob has roommate who did not.  we woke up to a lot of crying and screaming and the nurses were struggling to comfort the poor little guy.  He was in a lot of pain and did not have his Mom there to help comfort him, but they had a few nurses doing their best to rock him and make him feel better while trying to make the pain go away.  I think after an hour or two of listening to the crying and such Jacob started getting a bit stressed. They finally got him somewhat settled (for a while anyway) and he had some family able to get there and Jacob relaxed again and was able to eat and sleep well again.  It did prevent me from being able to leave to go get coffee and something to eat for a while though (I did finally get some).  When Rick and Josh (and my Mom and sister Shaun) got there, I took a break and went over to the Ronald McDonald house to clean up and show Josh around the game rooms and play for a bit before we had to head back to the hospital.  When we did get back to the hospital they let us get Jacob out of bed for about 15 minutes.  He was looking a bit stir crazy being in that bed and hooked to everything for so long.  Especially because of the drain in his head, we have to get the nurse every time we have to readjust him so that his head stays at a certain level with their equipment.  Hopefully that drain will come out in the next day or so.  The Therapists are coming Monday morning, so the work is going to really begin to get him up and moving around more.    By the way, he does not look that happy in this photo, but I can assure everyone that he was content to get out of bed and snuggle with Rick and I, at least until he started to get tired again.  I think he just is giving me these looks when I take a picture of him to show me he does not always appreciate being shown in just his diaper. Although I am still working on getting a smile out of him, I think he is also still trying to figure out why we have him in this situation to begin with and might be a bit irritated with us.

Josh is getting more and more comfortable seeing Jacob with each day is seems.  He did have to leave the room when Jacob got out of bed, but he later told me that is was because he was afraid Jacob was going to pull off his wrap and he did not want to see the stitches on his head.  He will go back Monday with me and work on some reading work for school, and maybe we will check out some of the activities at the hospital in the sibling play room to keep him from getting too bored.  We will let you know Monday night how it all went.



Another day goes by

Jacob is doing well again today, he has been tired, but is eating well, and getting the rest he needs.  He has not thrown up today, and they are happy with that, but I guess we are not out of the woods on that yet, it could still happen before the end of the week the Dr. said.  He has not had to have a lot of pain medicine, mostly a bit of Tylenol, I think he has a pretty high tolerance to it like me, so that is good. He has complained a little bit, but not much, I would probably be complaining more.  He does not like all of the wires and tubes coming off him though and has tried many times to pull them off and out.  He has even gotten his head wrap pulled apart enough that it is starting to look like a birds nest.  The nurse and I even joked about trying to find a bird to put in it and he gave us a dirty look.  We had to finally put a new restrain on him to limit the movement of his left arm, so he could not reach the top of his head (of course we had to get permission from the doctor first).  I have not heard much babbling from him, and his cry is so quite, I don't know if that is from the tiredness, or if it has something to do with his left hemisphere not being there to work anymore, it is a question I will have to remember to ask his Dr. tomorrow.  Of course as I type this he is waking up and starting to get a bit louder in his cry.  He even managed to get 2 of his leads off, so the nurse had to come and move them (we will see how long that lasts).

Josh came to see him today and was again afraid to get too close to him and especially touch him, I have not been able to figure out why exactly he just said he was afraid.  I told him that Jacob was not sick and would not make him sick, but he was still afraid.  I don't know if the fact that Jacob is so quite and still sometimes makes Josh nervous, or what.  Jacob did get to see him though and I think liked it, at least until he realized he had food waiting for him and then he was more interested in that.  Before Josh came by to see us though, he got to play with his friend Milo, who is Liz and Gary's/Patricia and Tom's neighbor.  He is a year older than Josh and he made friends with him on our first trip out here almost a year ago and every time we come out he is always anxious to go and see him. 

All in all it has been a somewhat uneventful day, and hopefully Jacob will be more awake and ready to move around tomorrow, although with that could come some louder complaints, but I am ok with that.

The day after

Jacob looked pretty good today, although a bit cranky and tired, but who could blame him.  He woke up shortly after we got to the hospital this morning, and started complaining to us right away in his usual way of kicking at us and grabbing our hands and the nurse even asked us twice if he was in pain, so we explained to her that he was just mad and that was his way of trying to tell us.  He was then moved out of ICU due to the fact that he had a good night and moved into a regular room on a different floor.  He did have to go in for another MRI, but the Dr came and told us that everything looked good, just what they were hoping to see.  Needless to say he was a bit tired and still groggy after all was said and done.  Dr said tomorrow should be better and he should be more awake. Hopefully he will have a good night.
Joshua has having a bit of a rough time the whole day.  He was afraid to go in and see Jacob (I think he thought he was going to be swollen up like the dough boy).  When he finally did, he said he felt better, and was not afraid anymore.  I realized then how much more he knew about all that was happening then I did before.  He is a smart boy and was pretty concerned about his brother.  He later had a bit of a breakdown, but I think that had a little to more to do with being really tired.  I think he will feel much better in the morning.

Surgery is done

We just talked to Jacob's Neurosurgeon, and he is out and doing well.  It will be a bit before we can see him, but everything went smooth.  He had a little bit of blood loss, but it was less than average he said.  He will be out of it for a bit, and probably won't recognize the use of his right side right away, but that should not last long though.  That will also be a big part of his therapy.  They will send things off for a biopsy and should have some kind of results in a week or so, but that does not mean it will give a reason on why his malformation, it will just give us a name for it.  He also said it appeared that the 2 sides of the brain were not talking to each other, and he thinks that is a good thing, but it is hard to say for sure.  It could also mean it will be a bit more work for rehab. There definitely was an abnormality on the left side, but that the right side appears to be normal, so It appears the surgery was definitely a good thing.  The next week will probably be the hardest, with emphasis on the last part of the week (the next couple of days he will be a bit out of it with pain meds and then after that everything will start "waking up" so to speak).    

Waiting

Well, we got a pretty good nights sleep last night (as good as you can get in a situation like this).  Jacob went to sleep right away, and slept until 5 am before he woke up and then went right back to sleep until about 6 am.  We got to the hospital and he was in a pretty good mood considering his lack of food.  We had to wait a while at the surgery check in and were beginning to wonder if they were going to start the surgery without him.  Finally they came and got us and said they had a delay because they waiting for a room for him in ICU and one finally opened up.  So needless to say surgery did not start until about 1 pm.   He was in a pretty good mood while we were waiting, at least until about noon, and then his mood started to turn.  They then were ready to give him a medicine that made him all smiley and goofy, and then he got very sleepy and I had to say good bye.  That is when it got a bit hard.  I know it was not for good, but it was still hard.  They said they would update us every hour or hour and a half, but the first update didn't come until after it had been 2 1/2 hours.  Boy was I starting to stress.  Finally they called and said all is good and that they were just taking their time and he was doing very well.  At this time we are still waiting for it to be done, or the next update. But I will try to be patient.

One day to go

Jacob had another night last night of having trouble getting to sleep, so finally after midnight, I decided to do something I usually would not do, I let him sleep with me in bed.  It went pretty well, but then Josh woke me up at 5 am saying he couldn't breath.  Luckily, he did not wake Jacob up, but my luck did not last.  Jacob decided he was ready to get up at 5:30 am.  So needless to say I had another night of lack of sleep.  Oh Well, just getting prepared I guess.  I did get Jacob to finally go back to sleep at about 7:30, only to have to wake him up before 8 so he could get his medicine before the cut off time.  He was not too happy that I wouldn't let him eat anything, but did pretty good when we got to the hospital.  Got him checked in and in his gown for the FMRI, and he was quickly out with anesthesia. 

When he came out he did not want to wake up, so they made us wake him up, which did not make him happy.  It took 2 apple juice and some animal crackers and to get him away from the people who put him into that situation to get him to calm down.  All in all the screaming lasted about 10 minutes or so.  We then got him some lunch (grilled cheese) and he was much happier to finish the rest of the appointments.  By the time everyone had seen him though, he was one tired dude and fell asleep in the car on the way back to our home base. 

We are set for surgery at 11 am tomorrow, so hopefully we will get rested tonight for the big day.

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