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.