anyone up at this time? Could you say a prayer?

[mommasita]

to your family, and Prayers

 

[TruBlu]

Lisa,
Did you call the children's hospital yourself or did the doctor's office call? I know that is a strange question, but when DS7 had a bone tumor a couple of years ago our children's hospital was going to take a couple of months to get him in. Well, I called them, cryed, and begged them to work him in sooner. It worked. He was seen in two weeks by the best doc on the staff. The apointment person worked us in, but I really did have to talk her into it. I asked to be put on a call list if they had any cancellations, but while I had her on the phone I explained my urgency. It might be worth a try.

Please let us know how the EEG turns out.

 

[lisajl]

The doctors office called. But, honestly, this is the first thing we would have to do anyway. My sister had to have an EEG done, I had completely forgotten about it. She possibly has MS. So, I was talking to her about it.
I called the number I was given to try to get him in this week, but they are booked. So, if they have a cancellation they will call.
I am going to be on pins and needles until then!

How did you handle all this with your child?

Lisa

 

[angel*lady]

 

[hematite153]

I'm sorry to hear he's still ill. You'll be in my prayers. Good luck with the EEG and the children's hospital appt.

 

[TruBlu]

How did you handle all this with your child?

It was one of the hardest things I've ever done! I felt the lump giving him a hug. The x-ray showed a small bone tumor that the radiologist told me was probably benign unless it started growing, then it would be malignant. Well that thing doubled in size in two weeks! That was when they sent us to the Orthapeadic Oncologist at the Children's Hospital. I couldn't have survived without prayer and support from family, friends and our church. I also didn't tell DS what was going on. He knew about the lump, but we really didn't want him to worry. We didn't even tell him when we scheduled surgery to remove it (they used a chisel and hammer ). We went to the beach, had a great time, drove home on a Monday, and had the surgery early Tuesday morning. I told him about it on the way to the hospital. I still didn't make a big deal about it, so he wasn't worried at all. I never let him know how bad it could have been - as they say on the breast cancer thread "Don't bleed before you are shot." I suited-up and walked him to the OR. They had me lift him onto the operating table and kiss him as they started the gas. I smiled and talked to him until his eyes closed, then I LOST IT! They had to lead me out of the room because I was crying so hard. I scared DH to death when I walked back into the waiting room sobbing.

After the surgery they came to get me because they thought he was asking for food. They thought he wanted blueberries, but he was really asking for his bear "Blue Beary". After he got him he was fine!

Anyway, our story has a very happy ending!!! It was benign!!! We are two years out with no re-growth. They have even stopped doing the x-rays every 6 months now.

PM me if you want to talk. I've been there and I know exactly what you are feeling. It is so hard, but we do what we have to for our kids.

Do you have anyone you can talk to? It really does help.

 

[TruBlu]

Lisa,
How did the EEG go yesterday?

 

[lisajl]

EEg was this morning. In fact, we just got back. It went pretty well. They only let me stay in with him until they got the electrodes attached to his head. We got out of there in about an hour and a half. Took him to the Disney store at the mall, he found nothing there. Stopped at the grocery store so we could get some croissants, his favorite.
I think we are both ready to crash! We won't know the results for, as the nurse said, 10 business days. She told me not to count this Friday, no one would be there. So, nbw the wait.
Thanks for checking up on him!
Lisa

 

[TruBlu]

Sorry Lisa, I got my days mixed-up. I could have sworn today was Thursday.

I know you are glad to have the show on the road. Isn't it a relief to be making some progres?

I'm really glad that the procedure went well. Now we just wait... Try not to let it consume you. During the waiting-to-hear-something time I always think that if they found something they would call sooner. It makes me feel better about waiting.

Just know that you have friends here around the clock ready to give you a big !

Tracey

 

[lisajl]

Got a call from our doctors office today, the EEG is NORMAL!! Hooray!
We are still going to the neurologist, it is on May 1st not the 8th. The nurse got the day and times mixed up! So, that is good news. I am sure the neurologist may tell us to monitor him. Hopefully, he won't have anymore seizures.
Thanks for all your support, concern and especially the prayers.
Lisa

 

[angel*lady]

Lisa -

That is wonderful news!! Thanks for the update and we will keep praying that it is smooth sailing from now on!

Blessings to you and your family!

 

[TruBlu]

Hi Lisa,
I hope your DS is still doing well. I had an eventfull day here. I found another lump on DS7! I have been checking it for a few days now, but it didn't go away. So, I took him in for an x-ray today. Thankfully our prayers were answered! The xrays looked great! I thought about you as I was sitting there waiting for the results. It isn't much fun is it?

Tracey

 

[angel*lady]

Tracey,

What a terrible scare for you!!! So glad everything is ok with your son.

 

[lisajl]

Hi Lisa,
I hope your DS is still doing well. I had an eventfull day here. I found another lump on DS7! I have been checking it for a few days now, but it didn't go away. So, I took him in for an x-ray today. Thankfully our prayers were answered! The xrays looked great! I thought about you as I was sitting there waiting for the results. It isn't much fun is it?

Tracey

Oh Tracey! I am so glad he is okay! Do they know why he gets these lumps? No, it is not much fun. I know when something happens to my kids my stomach goes to my feet and my head starts reeling. We just want our kids to be okay and have a normal childhood. My friend Lisa, her son has so many issues and has had brain surgery, etc. I just keep thinking how lucky I am and how thankful I am my kids are doing as well as they are.
Will keep you in our prayers, Tracey.
Lisa

P.S. Thanks for asking about Sean, he is almost back to himself. He is talking more, becoming more active, etc.

 

[Mackey Mouse]

Hugs all around. I am following this thread. Please do let us know how they are both doing.

I think we never stop worrying even when they are adults. *sigh* Hang in there you two, I have you in my prayers. why can't we just go through life without all this sickness and worry....

 

[lisajl]

An update on our neurology doctor appt. We went this morning and it sounds like good news. The doctor told us that 80,000 kids pass through Childrens Hosp. with a seizure, 70% of them only have one seizure their whole lives. This is the news we have been wanting to hear.
On the other hand, he wants to be sure he is not missing anything.
He has ordered another EEG on May 9th, Sean's bday, he'll be 10! And he will also have an MRI the same day.
Then we go back for a recheck in Aug. Things are looking up here.
Thanks for all your support! I love the DIS!

Lisa

 

[angel*lady]

Thanks for the update! Glad to hear the visit to the neuro went well. Hope you will be celebrating a great EEG and MRI on the 9th!

 

[chip91]

Just read through the thread, I'm glad to hear the positive's to this point, I'll say a prayer for you guys that no more seizures happen and the 2nd test, comes back normal.. It's so hard to have the sick and not have answers!

Prayers, hugs & pixie dust..

Chip