Sunday, May 31, 2009

Unfortunately, there's more to update...

Rubin came home yesterday and was feeling pretty good, but then last night noticed that he was losing a lot of blood (I won't go into details, but you know what he was here for so think about it...). He called the surgeon and he said he wasn't too worried, that it could be normal, but if it continued to call back today. It continued all night and he was dizzy this morning, so we called and he's back at the hospital. We waited for a couple of hours, and as soon as I decided to run down and get a Diet Coke, the doctor came in, of course. All he really said is that his blood count is a little low, and they are going to continue to monitor it to see if it gets worse - if it goes below a certain number then he will have to have a transfusion. They are hoping that he can just stay here and be monitored and it will get better. If not, they may have to go back in to find the problem. Looks like we're just waiting for now - will update when something changes.

Thursday, May 28, 2009

Rubin is doing great today! I spent a few hours with him this afternoon, and he got up and walked around twice. He is getting up and moving around on his own and feels a lot better. The pain in his stomach is gone for the first time since November, and the only pain he feels now is from the incision. All of the nurses and doctors are impressed with how good he's doing and how much better he looks than he did before the surgery. He thinks he should get to come home this weekend! :) I am so ready to have my husband back! Although he hasn't spent every day in the hospital, he still has never felt "good" when he has been at home in between episodes. And we both knew that making plans was impossible because his health was so unpredictable. It will be so nice to get back to "normal" - whatever that is!!

Wednesday, May 27, 2009

Rubin is finally back in the room after 3 hours in post-op recovery and he looks great! He said the pain was MUCH better this time and he is feeling good! Hopefully the overall recovery time will be shorter this time since it was laproscopic and there is no inflammation. Then I think we deserve a vacation once he is feeling better!!!


I just talked to the surgeon. He is out of surgery and everything went well. It took a little longer than expected b/c of all of the scar tissue from his last surgery that they had to cut through. They were able to do it all laproscopicly, so the incision is smaller than last time. They did not have to remove any of his intestine like he originally thought. They just closed up the hole that was there and created a new opening next to it. By not having to cut out a piece, there is less area that has to be stapled and heal, so it should minimize the risk of more problems. They found no active Crohn's, which is awesome. He is in recovery now and should be back up to his room in an hour or 2. The dr said he is doing good and they are being very proactive in trying to keep his pain under control. Hopefully the recovery from this surgery will be much easier and shorter, and we can go back to living some sort of a normal life soon. Thank you all for your prayers, and continue to pray that this is the last of his issues for a long time!!
Rubin called me at 1:00 this morning to tell me that his surgery would be at 10 this morning. Glad he called b/c I wasn't planning on getting here until 10 or 11! Of course, they didn't come get him from his room until about 10:30, and then we were down in the prep area for another hour. They took him back to the OR around 11:35 and the dr said it will probably take about an hour and a half. He is extremely nervous about waking up in severe pain like he did last time, but after talking to the nurses and anesthesiologist (he was wonderful!), I think he is feeling a little better about everything. So far the experience here at CDH has been much better than Rush Copley and I am very confident in the surgeon - he seems like a great guy who really knows what he is doing, and he is very nice and takes the time to explain everything and answer all questions. Will update when he is done and I get the report from the surgeon.

Tuesday, May 26, 2009

Here we go again...

So Rubin has been in and out of the hospital about a million times since November, and he is currently there now. They did a colonoscopy this morning to try and find the problem. They found the problem, but unfortunately the solution to that problem is another surgery. Apparently, his problems over the past few months have been related to a stricture (narrowing of the intestine) at the connection site from his last surgery and not the Crohn's. They think this was caused by scar tissue - not that the last surgeon did anything wrong, it is just unfortunately a possible side effect of the surgery. They are going in tomorrow to remove that section and re-create the connection. The hope is that since he is not having an active flare-up or inflammation right now, the chances of this happening again are lower b/c his body will hopefully respond better and heal correctly. I guess only time will tell.
The surgery will be tomorrow afternoon, and will require another week in the hospital and 4-6 week recovery time. He had a REALLY rough time after the last surgery, so please pray that he does better this time. This should fix the problem, but we just hope and pray that no new problems develop anytime in the near future. Our family needs a break.

Thursday, May 14, 2009

I'm Jumping!

Dear Family and Friends,

I have exciting news to share. I am 'jumping' for the Western DuPage Special Recreation Association (WDSRA) Foundation...literally!

I have decided to take part in the Jump-A-Thon for WDSRA. By taking part in the Jump-A-Thon, I will be taking a tandem parachute jump from approximately 13,000 feet reaching a speed of 120mph! This will take place at Skydive Chicago (Ottowa, IL) on Saturday, May 30th.

Please help support WDSRA and the important programs and services they provide by making a donation on behalf of my jump. You can make your donation online at, with me directly, or at the address listed below. Either way, you will be helping to make a difference in many lives. The WDSRA Foundation is a 501(c)3 organization. Your donation is tax deductible in accordance with IRS regulations.

Thank you for your support and...see you in the drop zone!


Amie Chrisman

**WDSRA offers more than 1,000 programs, trips, and special events to more than 8,000 individuals with special needs each year and has been providing recreation services for people of all ages with disabilities since 1976. We offer Special Olympics and adapted sports programs, dance and art programs, as well as social clubs and camps.

In addition, we provide a full range of inclusion services for any program offered through a participating park district. As a service to the community at large, we offer disability awareness programs that educate groups, such as schools, about living with a variety of disabilities.

WDSRA is a nationally acclaimed cooperative extension of nine park districts including Bloomingdale, Carol Stream, Glen Ellyn, Naperville, Roselle, Warrenville, West Chicago, Wheaton, and Winfield.

For more information, visit

Western DuPage Special Recreation Association
116 N Schmale Rd
Carol Stream, IL 60188
(630) 681-0962

Wednesday, May 6, 2009

The Brayden Dictionary

My son is hilarious. He has so many funny little things that he pronounces wrong, and things that he has given his own names to:

People Street - sidewalk
Long Water - river
Groad - road
Gyard - yard (don't know where the g's come from)
Nilk - milk (he can say this one right if he wants to, but he doesn't)
Building House - hotel (learned that this weekend in Iowa)
Swimmin Water - pool
Water Swimmin - swimming
Water Pants - swimsuit
Strippy Cup - sippy cup
BigDonald's - McDonalds

And there are so many more that I can't think of right now. I just wanted to make sure I wrote them all down somewhere so I can remember them (I haven't written anything in his baby book in um...about 3 and 3/4 years).

3 and 4

Cameron is 3 months old, and he has been pretty much sleeping through the night for the past week or so. He usually wakes up around 4, but I give him his paci and pray he falls back works most of the time (until about 5:45). This morning he slept until past 7!! Amazing!!! He is so interactive. He smiles, laughs, and talks all the time and is such a happy boy. I have been giving him cereal every once in a while too and he loves it!

And yesterday was Brayden's 4th birthday. I can't believe I have had this kid for 4 years! I remember when he was little like Cam...crazy. This boy keeps me on my toes. I am constantly laughing, and often ready to scream and pull my hair out. Yesterday I tried to give him a special train birthday day. We went to 2Toots Grill and ate lunch, which of course he loved (and he actually ate his food - normally he is too overwhelmed).

Then we went to Blackberry Farm and rode the train...and rode the train again...and rode the train get the picture. We also rode the carousel and looked at the animals, but mostly just rode the train.

And then, we came home and had train brownie cakes.

And all this is done while wearing a Thomas the Train shirt. He capped off the evening by watching his Thomas the Train dvd. Fun times!!!