First let me give an update on my girls.
Carrie had 1st appt. at new neurosurgeons office yesterday.We saw the PA first.(Carrie has hydrocephalus,you may know it as water head baby).Well we think we know what has been causing the eye pain and head pain.In Carrie's head is a shunt valve that drains excess spinal fluid.Well, our old neursurgeon has the valve set very high so it is draining very fast.Our new PA said they normal don't set shunts at that setting.So it seems as if she is overdraining which is not life threatening but very painful.Our new neurosurgeon is out of town til next Wed. The PA is gonna have him review the MRI results and speak with him about the possible overdrainage.Then all we will need to do is go see neurosurgeon,he will place a simple little device over the magnet in Carrie's head,set the computer and like magic the setting is changed in a matter of seconds...no surgery!!!!These programable shunts have been a life saver for people with hydrocephalus.Til then she will need to lay flat as much as possible it helps with the pain.We did find out too she has a mild form of chari malformatin,that is where the brain sets too far back in the skull.Sometimes neursurgeons wil have to remove some of the base of the skull to give room for the brain but thankfully hers is mild.Something new,no one has ever told us this but she hasn't had an MRI before either just catscans.SO, good news, looks like no surgery will be needed to help Carrie.It will be 4 years this Dec. since her last surgery on her head.She has had 11 surgeries so far, we hope to keep it that way for a long time.
Amber went to dr. yesterday.Hurting a bit more lately.Nurse said she was just healing from where the dr. removed the endometriosis and it was normal to feel pain cause it is healing.She was told to rest more. I think things are getting better for my girls.We atleast have some answers and some solutions.Nothing worse than being in the dark and not knowing what to do to help them. As for me, the pred. kicked in yesterday.
Well I go to reheumy tom. everybody.I am a bit nervous.I hate hearing"Can't find anything wrong".It's such an insult,makes me feel so stupid for going in to see the dr.I know something is wrong and I want meds. to prevent more damage and help with pain.Wish me luck. I have to share with my fellow chocolate lovers what I did last night. I was BAD!One of the guys at the firestation made a Chocolate Hershey Cake.Carrie and I went by the station on the way home from the dr.'s office.Well, they gave us a pretty big slice for me and the girls.The girls tried it but once they discovered it had nuts in it they didn't want any.....SO....I had to finsih it off!
Well that is my story.Not as depressing as the last thanks to pred. Kelly You are a wonderful mom to get rid of that bad, bad cake
I was visiting a JRA message board that I often go to and chat to other moms of kids with JRA. I wanted to share something with you that was posted by another mom. I have shared it with Roxy and wanted to share with you too. It is perfect for us moms with Chronically ill kids. You may have already seen it, but here it is. It is called Welcome to Holland. When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
Pam Pam - that is beautiful. My son has lymphoma- so it has a deep meaning for me... Sheila- I know how it is HAVING to eat that chocolate to save the kids from ruin....LOL - Seriously glad this week is starting out with a positive note. Glad to hear the prednisone is kicking in. I know how good it feels to have a moment or two of pain silence....Hope your week continues to be a fantabulous one. Pam that was very well put.A few years ago when I use to attend church a older woman came up to me and said somethng that I really needed to hear,especially at that time.She said that God choose me to be the mother of a very special child,that only I knew what she needed and I was given a special gift and responibility.I believe that with any family that has a child with an illness.These children are gifts and through my children and their illnesses I have seen things and felt things I never would have had before.I see what life should be and how we should treat one another.Our family is different in many ways just like Holland is to Italy, actually our family is like no country I know
Thanks for the very sweet story,I love the way it was put and it really speaks the truth.
I believe too that the children with special needs are given to very special families. If I could'nt have had Oscar any other way than to land in Holland, well then I'm so glad that I did and I'll gladly stay in Holland forever:0) Oscar is doing well thanks. He has had JRA for many years, but was only recently diagnosed. He misses alot of school and has ups and downs (knees are a problem at the moment), but most people would never know there was anything wrong with him and are usually surprised to hear it(it's the old "but you dont look sick" syndrome). Even his Dr's were trying to tell me I was in Italy, but I knew all along I was in Holland. I have RA and Fibro both recently diagnosed, but my RD thinks I have had the RA for many years. Went in to remission when pregnant and resurfaced at perimenopause. Good luck with your RD apt tomorrow. Keep us posted on you and your girls.
That is GREAT shelia! Possibly not another surgery for Carrie! Hope ya'll get more positive results!
I Hope all my friends have a great day!
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would have never met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend you life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things… about Holland.
Sheila,
That is so awesome!! what a blessing to get that
news! I will be saying a prayer for you as you go to
the doctor tomorrow.
Tara
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