Wish us luck, ethan's appt friday

[mamastirls25]

We are off tomorrow to go to shriners to get a second opinion on Ethan's Brain malformation and other problems that have been cropping up .

Wish us luck please im worried about my little guy

michelle

[Ralph]

Good to luck to you all Michelle....you will be in our thoughts and prayers.

[kim]

Good luck.

[frankcor]

Via con Dios, mamastirls. I'm sending light and love to accompany you on your journey.

[mamastirls25]

Thanks everyone We are here in springfield thank goodness for free internet at the hotel ...

the weather coming down was not nice but i dont expect it will be any better by the sounds of it going home


His appt is at 9 am so we hope all goes well

[bobbbiez]

Michelle, my best wishes and love are with you all.

Sorry, it took me so long to respond to you but we're in a process of moving my rooms around which means the computer might be shut down for awhile. Hopefully, all will be done in a week. So if ya don't hear from me you'll know why.

You have my number so don't hesitate to call and keep me informed.

Give little Ethan a big hug for me. All will be good!

[lucy]

Goodluck, I hope that everything turns out well.

[concerned]

Good luck and your in my prayers.

[lrtill]

best of all posible wishes for your little guy and safe travels!

[Clipper]

Good luck kiddo, and I hope that the medical prognosis is something positive for a change for you guys with so much on your plates to deal with. I will pray for not only good news on the medical front, but also for you guys to be safe as you travel. We love you guys and I am glad we can be here for ya to use as a sounding board when your days are cloudy and dark. Keep your chin up Darlin. Better days are coming. Hugs for all, and be safe.

[mamastirls25]

Thanks everyone

We are HOME

Ethans appt went well he has a dandy walker variant very mild , the mega cisterna magna was a misdiagnosis, he said that he doesnt anticipate any fluid problems in the brain but that he does have a large amount of fluid and that if he has headaches that he may need to be shunted

He also said he will need an adenoid removal and a tonsilectomy he has a really nasty infecton in the sinus we saw it on the scans and that could be why he is so sick all the time

Now trying to explain to Dr Chafe that this other dr wants him to do more ought to be fun but i want both the sinus and tonsil surgery instead of just sinus because the dr out in mass said that the infection will target the tonsil if they arent moved out also

I am not lookin forward to the surgery but i would rather have a tonsilectomy for him than a brain surgery any day

Michelle

[dgriffin]

That's good news, Michelle. Here's more information on Dandy-Walker

www.wrongdiagnosis.com/d/dandy_walker_variant/intro.htm

[Clipper]

Glad you guys are home safe Michelle. I am glad that the news was encouraging and that you are now able to look at things from an informed viewpoint. All things are much easier to endure when you are informed and know what to expect.

I am sorry that he has to have a tonsilectomy, but tonsilitis plagued me until I was 25 years old before I finally had mine out. Tonsils often keep infection from going to some other part of the body, but they also can make a simple infection exhibit worse than normal symptoms. Like Ethan, I have always had bad sinusitis. Whenever I got a sinus infection or my sinuses became inflamed or plugged, I would end up with quinsy, which would exhibit itself as absesses on my tonsils and in my throat. The younger you are when you have a tonsillectomy the better. I really suffered at 25, compared to what I would have experienced had I been younger and my tonsils been smaller.

Since discarding my tonsils, I seldom have a sore throat and unless it is from strep, I usually am able to relieve it by spraying my throat with chloroseptic spray or lozenges, and an antibiotic from the doc. I still have allergy problems and I still have sinusitis from time to time, but by controlling the humidity in the house and taking regular allergy pills for hayfever etc. I seldom end up with anything more than a mild discomfort from the symptoms.

If you guys are heating with wood, the humidity is an important factor and hard to maintain.

I have seen little guys with a shunt in their head. It was just a little tube that ran down behind their ear and drained the fluid somehow. I am going to do some serious reading on the subject of "dandy walker", but it seems like you guys are encouraged by the news, and therefore, I also am enthused for you. You will always be in our prayers, and your boys will always receive a special and individual prayer whenever I pray.

At least with the tonsil problem diagnosed, he can live a better quality life with a tonsilectomy and probably some nasal sprays and adjusted humidity levels in the house. God bless the little critter, and I hope he does well.

Hang in there Michelle. life WILL get better, and while we don't always understand the reasons for things that happen, there IS a power greater than ourselves and he does watch over us all. He never puts more on our plates than what we can handle. You are a very special mommy with two very special boys. They are blessed to have you guys for parents, and what you see as problems in their lives, actually makes you all closer as a family, and more love than the average is shared between you all.

[mamastirls25]

Thanks Clipper ..

Things lately has been really strained but im not really gonna get in to that on here but we are working through it ......... PM me if you want

We are getting rid of the woodstove next week and going with a pellet stove from herkimer home and leisure , They are 600.00 off right now and a ton of pellets is 245.00 so now is the time to do it , hopefully it will help with the issues at hand with the boys

Im cleaning like a madwoman today i have started physical therapy and a TENS unit for my back and i feel good lately i hope it continues

[bobbbiez]

Michelle, happy to hear y'all made it back all in one piece. Was worried about you because of the nasty weather we were getting. Glad you're back.

The Doc gave you excellent sound advice by wanting Ethan's tonsils removed. Every time I get a sinus infection it is ten times worse because I still have my damn tonsils. All three of my sisters had theirs removed when they were younger but my parents didn't have mine done. Go figure!
Back then they didn't remove them unless they got badly infected. They believed they had a use but have now changed their theory on their use. Mine didn't give me any trouble early in life but they are making up for it now.

Do whatever you have to do for Ethan's sake. If you have to argue with his Doc then so be it. You are learning very quickly how to get things done that are otherwise ignored and just because another Doc might suggest a different care. Be prepared and stay strong.

Having to deal with Fibo teaches you to fight to correct many things and most of the time it's fighting your own Docs. They just don't completely understand the disease yet and a lot of them still won't acknowledge the disease. Getting them to work with you is half the battle. When they start to listen to the ones affected by this most disabling disease that will be the day all will find some relief.

How is the tens machine working for you? Keep a good check on it to see if it is helping or you're just having a better day. I'm very interested to see what you think about it on a longer period of use. Keep me informed.

Very happy you're back.