Well, since the last update, we went back down (of course) but accidentally happened upon what is a strange solution that now has been working for 2+ months. Actually it really was starting at the Feb post.

Dennis had a sinus infection and got put on IV rocephin thru his picc. he could eat more. course ended and he was very sick in a couple weeks. Put back on, better right away and could eat. Off, soon sick again. After a couple 2 weeks trials and then a month with sick soon after, dr. decided to leave him on it. First the weight loss stopped and now he's actually gaining. 4 REAL lbs in the last month. (He lost way more weight after my last update.) No back sliding this time. He still has a limited diet but now can include foods from all food groups in some sort. He can eat a grilled hamburger (no spices and bun must be toasted to a crisp) and that's so cool to be able to enjoy grilling out as a family. Even if I grill steak for the boys and I, Dennis feels like his burger is steak it's so great to him.

Our internist is the one who started this treatment. (She's a goddess!!) Just had a 3 month follow up with GI and he's AMAZED. Said there really is no reason this should be working but it OBVIOUSLY is. He said there are a few documented cases with this being the solution but very few as antibiotics end up killing off all the good bacteria too. He said that so far, nothing about Dennis has been "normal" so this "abnormal" solution just happens to fit and DON'T change a thing.

Dennis was just about on TPN. Drs. were begging him. I was begging him. Our insurance agreed to pay and even our nurse care manager with the insurance was trying to get him to do it. BUT in his typical stubborn form, he steadfastly refused as that wasn't how he wanted to be kept alive. Thru this, our internist was just trying to do everything she could to keep him comfortable at home and treating his infection without him having to be admitted to the hospital. What a great accidental discovery! It's so weird that oral antibiotics make him so sick and we tripped on the IV stuff by accident.

Life has changed here DRASTICALLY in the last month. "Variety" in food has given dennis a spark back. He's still weak and tired but HAPPY. Kids are starting to have their friends back in the house. Things here are almost to pleasant! (Well, he can still be a big pain sometimes but I wouldn't have him any other way!)

Drs say it will most likely be an infection that ends up killing dennis in the end due to his whacked out immune system but no way to know if it will be "6 months or 6 years" (or 20 years for that matter.....) so all involved think that taking the chance of 6 months of a "quality" of life is better than 6 years of hell just to keep him from getting antibiotic resistant.

Oh yeah- still no prolapse (good..... hasn't stayed in this long after surgery before). Occasional light blockage issues but still WAY better. He's at a fentynal dosage now that is really helping with his pain. He's now walking for light exercise several days a week and doing alot of stretching to keep his arthritic body from freezing up.

AND our older son just got a 32 on his ACT! And he's going to nationals in speech this year (a week in las vegas for him). His event is extemporaneous international speaking. Not bad for an Asperger's kid!! (Yeah- I pushed him thru the years as hard as I've been pushing Dennis.)

In spite of all this over the last 3 years, life really can still be good!

Everyone who is struggling and it seems there is no end to the road, just keep trying. We have adjusted our definition of "normal" several times. This is really a "normal" I can live with even if there is no further improvement but once again, rays of hope..... Don't give up because your solution might be just a little further down the road OUTSIDE of the box!

Thanks for being here guys!!!

Hi Joan,

I am just so glad to see this post this evening! What a real tonic to end the weekend on! I am so happy that Dennis is happy and even happier that you have all found a new normal (whatever normal is) and that you have that spark of hope.

You are one heck of a lady Joan! Who else could bully their husband and son into doing so well despite the insurmountable hurdles?

Keep up the great work and fingers crossed that things continue to improve for you and Dennis.

Luv & hugs to you all

Shell

Oh Joan, what a wonderful post! Far from nirvana, but you make your current situation sound like certain bliss. I think that you have definitely perfected the ability to draw joy from whatever life sends you, something every one of us could stand to learn. We all would be happier if we could adjust our definition to normal to reflect reality.

But, I think that you are really on to something with this new antibiotic treatment. Who'd have thought that a sinus infection would bring you to a solution? Thank you so much for checking in with us and giving such a hopeful update!

Jan

Thank god/dess for sinus infections!!!! Who'd have ever thought they would be a good thing?

Joan (and Dennis) - this is the absolute best news ever! I totally agree with Jan - everyone could learn a lot from you. But you already know you're my heroine, right? I am so, SO happy to hear about your new and bright future.

Thank you so much for checking in with the spectacular update. It really IS a Memorial Day, isn't it? Big higs to you all!!!!!

kathy

Joan,
Little blessings are just so wonderful. Just when you think that you are at your end something works and gives us a reason to smile and to hope. I think about you and Dennis often, I always hope that things are better. It is so nice to know that no matter what you will find the bright side and the light. Hamburgers have always been my salvation food, so they rank on top of the favorites list! Thank you so much for your optomistic view of life and your willingness to share the good and the bad. Here's to many more culinary pleasures.

Norma

Hi Joan,

Yahoo, Yahoo,........I am here doing my happy dance for you!!!! It was so wonderful to click on my computer and see the update from you. Things sure can happen in strange ways some times, eh??

It is funny that you mention about the hamburger for Dennis and how he finds that he can tolerate that. I notice that seems to be what Jim orders all the time. He doesn't want any veggies with it or mustard just the burger and bun. Says he can tolerate that quite well and it seems to be slower to send him to the bathroom. Heh, if he is happy I am happy.

It must be so wonderful for you guys to be able to share a meal together as a family. Yahooo!!

I don't know if I told you or not but my Mom had to be put on a peg feeding tube last month. It is not easy. She has been wonderful but does miss eating. Every once in awhile she will ask if the nurses are going to bring her supper. I feel so bad for her but then she smiles and says, Well I am this side of the grass, so that is a good thing. Ah........still we can learn from our Mothers!!

We are suppose to be moving in our new house this weekend. So everything is in nuts right now. I keep saying to the contractor as long as the toilets are hooked up, everything else is a plus.

Well, again, thank you so much for sharing your news, it was so good to hear from you. We have all learned so much from you and how you face so much adversity with your humor. You go girl!! I am woman hear me ROAR!!!

Smiling for you all the way from Cape Breton!!

Brenda

Oh this is awesome news!!!
Had not been on in a bit due to some issues I have been dealing with myself, but had to come check on everyone tonight and saw this one first - SO SO glad to hear this Joan! I am doing the happy dance with you!!!!

I am allergic to rocephin - turned me into a tomato LOL ... but so glad it is working for Dennis.

Brother is doing quite well too. It is so nice to see these guys finally getting a little break - they have been thru so much.

Give Dennis a high five for me and give yourself a hug from me. You two have been thru so much but you have been troopers,\.

Congrats to your son as well! That too is awesome.