"Don't compare your life to others. You have no idea what their journey is all about"

Monday, September 27, 2010

What a good weekend...

We just got back yesterday from our Annual Branson Trip this was our 3rd year going!
The girls shop all day and the boys fish all day on Lake Tanicomo...too much fun! Because I get most of my Christmas shopping done and get a little something for myself while I am at it! The boys caught 210 fish the whole weekend so it was a very good trip. Ready for next year..... It went by to fast!
I missed Hunter so much though! It was so hard not to mooch on him too much when I got back :) !!!
He had an exciting weekend with Mee maw!

Some pics from our annual Branson trip....

Wednesday, September 22, 2010

Sleeping cuties!!!

Letter to God....

I was putting away clothes last night in Gabby's room, I turned to leave the room when I seen all of these toys, clothes, papers etc..... under Gabby's bed so I started taking everything out from underneath her bed I made a pretty little pile of all of this stuff in the middle of her room for her to clean up when she comes back over.
As I was going through my rant I ran across something that made me sob!!!
When I talk to Gabby about Hunter she seems to understand that Hunter is going to need a lot of care and it will take him awhile to learn things and that he will need time and patients, I do not want to scare her at all but in a way this made me understand how she see's her little brother and that she loves him with all of her heart. We love you Gabby and you are the sweetest little girl we know!!!!
I think what started some of this was a movie we watched on Sunday with my mother called "Letters to God" Gabby watched this with us and it sheds some light in some of what our family is going through. Great movie I recommend renting it or buying it, if you like tear jerkers! This is what I found underneath Gabby's bed, I am pretty sure there was a reason for me looking under her bed it was to find this.....


Tuesday, September 21, 2010

New Update on Hunter

Well we have a 3rd and hopefully final diagnosis for Hunter.
(As of 9/17/2010: Microcephaly with a simplified brain pattern, cortical eye impairment, seizures, infantile spasms & the spots which we do not know too much about, that is why I making another Derm Appt.)
The other 2 diagnosis were 1st Polymicrogyria, seizures & spots, 2nd Pachygyria, seizures & spots the 3rd is the one above.

So the other 2 kids that are like Hunter are in one family one is an infant and the other I am not sure what his or her age is.
One has a similar brain scan as Hunter the same spots but no seizures or infantile spasms. The other kid has a similar brain scan as Hunter has the spots and this one has seizures and infantile spasms.
So according to this doctor that I talked to on Friday they are trying to see if they are linked in any kind of way.
They are going to be doing lots of research on Hunter and these other 2 kids like Hunter because they are so rare. (rare meaning the spots that they have all over there bodies and the other linking factors in this.)
They are telling us this is going to be a long process and will take awhile to determine what caused this whether it is in between Nick and I or just a fluke thing that just happened to Hunter.
When we go in on the 29th of this month to see Dr. Weisenberg we will be talking with this new doctor that I talked to on Friday he works very closely with Dr. Dobyns that is in Seattle, if you do not know who Dr. Dobyns is he a doctor that specializes in kids like Hunter. I know quite a few moms that have gotten there kids diagnosis from him, so he is top notch when it comes to our children.

The Isaacson's

Thursday, September 16, 2010

What's next.....

Now that we have the Therapist thing figured out for now...Here we go again, lets just move to the next issue!!!!!
Sounds like there is no more room to move up on the new drug from Canada and Hunter is still having seizures not as many but he is still having many.
So they are going to give this Canada drug another 2 weeks to really kick in and if it has not we have to move to step 2 the Vigabantrim (spell??) this is the one that may cause the perrifial vision issues while on the drug, but they have said that adults have only complained about that while on it.
So if that does not work either then we will probably start the Ketogenic diet I have heard that the stats are 2 out of 3 kids that do this helps there seizures get under control, my only worry is that he will not gain weight and grow like other kids his age because it's a diet.
It sounds to me that Hunter will most likely be on the diet sooner than later, so here comes another hospital stay because he will have to be taken off the Topamax and have to fast for 24 hours before starting the diet then while starting the diet he has to be monitored in the hospital for a few days. (More learning for mommy & daddy)
But I still am in hopes that between these 2 drugs one of them will work and we will not have to worry about this diet.

Hunter still has been staying awake during the day and his dad told me that he has been talking a lot today, he has not ate to much still working on that.
Last night I went to my mothers to pick him up and started I talking to him and he would just smile from ear to ear with those cute little dimples! Too sweet!

The Isaacson's

Monday, September 13, 2010

Good weekend

Hunter had a good weekend and loved being at the parade on Saturday! As you can see below in the pics!
He has been staying awake and he has not had that many seizures this weekend! I am ready for another one of those next weekend. I hope he has a good day with Grandma Isaacson today!
Cool shades!!!

Posing with his Aunt Jennifer!
Gabby with her HUGE bag of candy that we do not need!!! She had a blast though!

This is us meeting Roy Blunt & inviting him to Hunter's Benefit.

Looking cool with Mee Maw!!!

Hunters 1st Parade

Hunter having fun listening to the Marching Band!

Friday, September 10, 2010

Happy boy

Hunter has been doing a bit better today he is with his Mee Maw Polly today and was awake for his Development Therapist Suzie this morning.
I hope that he will start staying awake more during the day now, Mee Maw said he has been awake for awhile so far today so he can get more caught up on his development.
He was very happy last night and smiling up a storm...So cute!!! Made mommy very happy!!!

Thursday, September 9, 2010

same old same old.....

Hunter has been doing about the same still sleeping all day, as you can see in most of our family photos!
We did get some bad new last night though with the First Steps Program none of ther OT or PT people will travel to where we live or where his Grandma's live, one of them only lives 25 min. from where we live. So now we have to take him somewhere possibly 1 hr. 1/2 away (why do the things that he NEEDS have to be so dang difficult to get!) I guess I just don't understand, but some way some how we will get him there because he needs it to progress with his development.

Tuesday, September 7, 2010

What cheeks!

Orange Tractor

We finally found some adorable (Orange Tractor clothes) all you see is the (Green Tractor) that his Pa Pa is not to fond of.
Here is Hunter sporting his awsome new clothes!!! Thanks to Aunt Jenn....

Mr. Happy pants!!!

Saturday, September 4, 2010

Sleepy Baby

Hunter still has his days and nights mixed up...ugh!
He is still not eating as much also.
We will get this figured out soon I hope.
We are getting family photos done Sunday afternoon...this will be are 1st time having this done! I am very excited.
Hope everyone has a wonderful Holiday weekend!

The Isaacson's

Friday, September 3, 2010

Mommy & Hunter


My little cutie pie!!!
He finally decided to smile for the camera!

He had a rough night last night so I was on the phone with oncall at 10:00 PM becuase after seeing 15 or more small seizures I was at my breaking point on what to do.
I called and this very sweet Doctor gave me some sort of direction, we gave him some Clonazapam that calmed him down a bit.
That was a huge relief to me, let's just say I slept a little better last night.
Nick stayed up with him till about 1:00 AM just to be sure that he was going to snap out of it.
This morning I went to pick him up and he seemed like he was in a better humar, he started talking to me.
I hope that soon little Mr. Hunter will get his days and nights right again.
I wish everyone a safe and happy weekend, looks like we are going to have goergeous weather so ready for it!!!!

Love, The Isaacson

Thursday, September 2, 2010

This is very new to me!!!

Here is the little man eating his carrots with his new med!!!
We are hoping that this new med will be the key to getting his seizures under control!!!

This blog thing is new to me I will get it down someday.