Plan F

 As I'm sure many of you know...Jackson has had many tummy troubles since he was born. He is being followed by a team of doctor's for his issues and recently I had an appointment with his Gastroenterologist to discuss where we have come in the last 3 months and where we need to go.

Here is the plan now....what I like to affectionately call 

"Plan F" - mostly because i feel like we've gone through this many plans so far!

1. Number 1 and the good news from the visit is that he is very happy with where Jackson's weight is right now. He's gained a good amount since our last visit in December and is definitely headed in the right direction...yay positive!

2. And this one relates to number 1 - is that he feels the reason that Jackson has gained this weight is due to his tummy feeling better from the meds.

3. Because Jackson has gained weight since first starting the 2nd med (erythromycin) and the medicine doesn't seem to be as effective anymore he will have his dose uped so we can get control of the issue again.

4. The doctor feels that it's possible that with his weight gain and the possibility that he's grown some form of immunity to the med that he will go off of it for 5 days (starting today) and then when he starts it back up he'll start back up on his new med. This is supposed to do 2 things. 1) let his body have a break from the med to work against the immunity & 2) basically gives us a mini look at what would happen if we took him off of the med now.

Unfortunately after today being off of it his symptoms have increased quite a bit Not what I was hoping but certainly what I expected.

5. I asked the doctor the pointed question of basically how much time do we have left that we can give him to see if he'll grow out of these issues. He said that we'll give him till he's 2.5 (6 more months) and if he has to continually have the dosage increased with weight gain and he isn't showing any signs of improvement than he has a doctor doesn't feel morally right to just continue refilling his prescriptions which are essentially just masking a problem that is very visibly there. At that point the next step and new plan would be to perform an Endoscopy to see what truly is going on. Obviously this is our last course of action so we are praying pretty hard that he snaps out of this in the next 6 months. He said that when looking at Jackson's Upper GI test we did earlier last year that the way Jackson is "made" is correct but it is his plumbing that's an issue.

 

I feel good knowing that I have a time frame now.

6. So Jackson now have 3 diagnosis:

    1. Extreme GERD

    2. Sandifers Syndrome

    3. Delayed Gastric Emptying Syndrome

After Jesse & I talking last night I think we both feel that if we get to 2.5 and he hasn't shown signs of improvement then the Endoscopy seems like it is our best next course of action. 2.5 years is an awful long time for a little guy and us to deal with all of this and if he isn't showing us that he's getting better than I want to do whatever is in his best interest to help him feel better. 

Only time will tell....


Besides working on his new medicine regimen I will start taking Jackson to Feeding Therapy and Speech Therapy sometime after we get back from our Oregon visit in March. Jackson had a Feeding Evaluation a week and a half ago where they discovered that he has created many habits in his eating that stem from the pain and discomfort he has always had from his 3 diagnosis. 

  While all of this is extremely overwhelming and worrisome most of the time I know that we are very blessed to have a happy (most of the time), intelligent, beautiful and funny little boy. I know that we will figure this all out at some point and until then I need to be a strong advocate for Jackson and help him in every and any way I possibly can to diminish his pain.

It is my mission

As a mother I think about all the values I want to instill in my child as he grows up.

I want him to be a friend to all and a lover of the world.
I want him to not judge others for who they are but bask in the awesomeness of who they are.
I want him to be a positive productive member of society and be happy in knowing exactly who he is.
Of course there are many many more...

And this all means that it is my mission to provide him with a strong and supportive role model as a mother. This means doing things that are scary and uncomfortable at times to provide him with an example.

It is no surprise that most leasing consultants in apartment complexes aren't always the most delightful people. Unfortunately one such individual in our current leasing office has messed with the wrong mama bear. Let's just say that this man is not one of those people that is a "friend to all and lover of the world." He has treated Jesse and I disrespectfully since we moved into this complex and he has recently pushed my last button!
I filled out a survey sent to me by Corporate in which I , without naming names, briefly wrote how unsatisfied we were with a member of the leasing office. One would think that since this survey was sent to me by the Corporate Office that is where it would be returned...clearly not. This past week this man decided to take my phone number out of my file and CALL me to discuss my problem with him!!! Yes...he actually did that! During this conversation he did not take a tone of apology or a willingness to work things out he instead was confrontational and left me feeling scared and afraid to enter the leasing office or be in our apartment anymore. My initial reaction was to say...ok let's just leave it and not make it any worse. BUT I was reminded that it is NOT ok for me to have to live in fear in my own home because of someone else's actions.

This is now an opportunity for me to set an example for my child and to prove to myself just how brave I really am. I am not going to drop it and I am not going to roll over on this.

This man is a bully and it is my mission to teach Jackson that you don't have to let bully's bully you. 

Snowman Fun!

Well over the past few days Colorado has sure gotten hit by a fair amount of snow! 15" in our area to be exact since Friday and boy oh boy are these Oregonians happy!

Colorado does an amazing job at keeping on top of the snow/ice and making things as safe as possible on the roads. There was quite a different reaction to this storm vs. other storms that have come through this winter. This time around the news named the storm "Winter Blast!" which definitely reminded me of Oregon's reaction to snow :) People scrambled to the grocery stores leaving the shelves which contained milk, eggs, bread and meat completely bare! Crazy! Luckily we had done our grocery shopping earlier in the week so we were set to just hang at home and hunker down.

I don't think I'll ever get tired of seeing Jackson's reaction to the snow first thing when he wakes up in the morning...so priceless. And now that his vocabulary has started to grow at such a rapid rate the small sentences he puts together are so amazing and proud for me to hear! This time around Jackson came bolting out of his room and because the blinds were closed he didn't notice the snow at first. But when I told him to look outside he came running, plastered his face against the window and squealed "snowwwwwwwww....prettttyyyyyy....seeeee!" Made my heart melt :) Unfortunately during the first day for the snow on Friday the wind was howling so we had to stay inside all day because that's no place for a child with basically 0 body fat. But on Saturday we sure made up for having to stay inside all day on Friday!

Jesse, Jackson and I ventured out to build Jackson's 1st Snowman! Jesse and I both agreed that building that snowman as a family has been the most fun we've had since being here in Colorado! Such a wonderful memory for us all :)

helping Daddy!

Yes we did use Green Olives for the eyes & buttons, a cheeto puff for the nose and green beans for the mouth :)

I Love this!