MRI date change

Hi, Ellie was going to have her next follow up MRI on Tuesday the 26th, but it isn't going to be Tuesday anymore. The sedation clinic called me for the questions before sedation like they always do and they said they were going to do it the same way as last time. So I said I thought we were just going to give her some oral meds to relax her some and try to not have to do anesthesia since this was a fast 12 minute MRI. So she said it wasn't ordered that way so we had to talk to the doctor to change it. So she talked to the nurse coordinator for pediatric oncology and they read over the reports of the last MRIs and noticed Ellie didn't even take the oral meds well and wouldn't let them do the IV for the anesthesia so they didn't think she'd be cooperative this time around either, so they ordered general anesthesia for her. That means it was cancelled so general anesthesia and the oncologist can be available at the same time to get it done. General anesthesia means she breathes gas through a mask to put her to sleep so they can do the IVs and everything while she's asleep. Trying to decrease the trauma. But all this time, these past three months, we've had Ellie in therapy with the school counselor doing play therapy so she can process all this she's been through and we've been preparing her for oral meds, IV meds and staying awake for a fast MRI. But since plans change from when we leave one doctor to the time they schedule the MRI and meds get ordered differently things get screwed up. So then I question the sedation nurse when she calls and all the prep we've been doing with Ellie goes to the way side. So needless to say they want to continue to use general anesthesia and sedation that way until she gets older and more mature to handle the needles and such. I can see there side because she is so scared of the needles and stuff and she's still young but then don't tell us we can try it one way and not order it that way. It's an emotional roller coaster changing plans the week before it's supposed to happen and now waiting again for the new date.

I'll let you know when it's rescheduled for. Thanks for listening/reading my venting. Sorry.

Hacked!

I just wanted to let everyone know that my yahoo email was hacked and if you got a strange email saying I was mugged in the UK and needed $2700 to help me get back to the US, IT WAS FALSE. I'm sure many of you figured it out and didn't really believe it but still, how annoying and troublesome. SERIOUSLY!! Sorry about that and hopefully it won't happen again. When I get a new email I'll let you all know what it is. For now you can use this gmail account. RAR!!

p.s. thanks to all those who would have helped me if I really needed it. LOVE YOU ALL!

Adios!

Eye update part 2

Ellie had her eye appointment in Iowa City and the results were good again. She was 20/40 in the right eye. A little fluxuation that they said could be due to the dryness of her eye at time of reading pictures and the scar tissue on her cornia from the infections. She may also test better in Waterloo because they see her more often and she is getting used to identifying the pictures they have her look at. In IC the pictures were really different and it wasn't as easy to identify them. So the doctor is not worried about the little fluxuations. He is happy to see more improvement and asked that we continue the atripine drops in her left eye. So we continue with all the eyedrops to keep them healthy, wet and improving.

Her last scab came off last night and didn't scab back over very much at all. So we are happy to see this morning that there is a very tiny spot now where the last scab was. At the end of January when Ellie has her next MRI Lonnie at Dr. Menezes' office will look at her scar and if it's all clear she will set up an appointment so we can meet with both surgeons to talk about the next surgery option for the nerve graph for her face. So as of now it looks like we have a month break before we have to go to IC again. Yay!

I got a call this week from the Pediatric Specialty Clinics in IC to set up an appointment for her genetics testing the oncologist suggested we think about doing to see if she has a gene for brain tumors or not. If she does then it will explain more of why she got this one. Then we will test our family to see if one of us have it also and are at risk. They have a Waterloo Clinic where they do this testing but our appointment isn't until March 4th. So at least the appointment is in sight and we aren't still wondering when they will get to us.

We all feel so blessed to have Ellie with us this Holiday season. Everything is so much more special once you've been through something like this. The Lord has carried us through this time and we praise his birth this season. We are thankful we can be at home celebrating with everyone and not stuck in the hospital like so many families with sick children. Please pray for those families have to be separated for the Holidays due to a sick child who can't be around the rest of the family. We hope and pray you all have a wonderful, blessed Christmas and a Happy New Year!

eye update part 1

Ellie had an eye appointment with Dr. Puk in Waterloo to follow up on the two eye infections she had a while ago. He says the ointment and eye drops we've been using are working well. He even noticed that her blinking is getting stronger and her eye is able to close more during blinks. Then he asked her to close her eyes really tight and her right eye closed much quicker and almost all the way. So he noticed a big improvement. When he pointed it out I noticed it also. So he wants to see her back in a month with the same antibiotic regimen we have been using continuing. Then he won't need to see her very often if things still go good with no infections. When doing the vision test she made it to the 20/30 screen in her right eye. Last two or three times and the last IC appointment she could only see 20/50. So there has been another improvement in her eyesight. So the eyedrop in her left eye she gets to help the vision in her right eye is helping also still. This is great news to us.

There is another scheduled Iowa City eye clinic appointment for Monday the 14th of Dec. This Monday. So we will make it through that with hopefully as good findings as today and then drop in to see Dr. Menezes PA so look at Ellie's scab one more time afterward.

Woo hoo!!

Oops!

I noticed that people have been responding to the posts to the gmail account. I don't ever check that for emails therefore if you sent an email in response to a blog post and never got a response from me it wasn't intentional. I didn't even realize you would get my gmail email account info. So I never even thought to check the actual email. So I apologize for never responding to the many emails you have all sent to the gmail account. If you want to email me and me actually read it please use asmiley35@yahoo.com. I check this one all the time at work. Not so much at home. Thank You

It's working!

WE HAVE PROGRESS ALREADY!! After two days of doing the peroxide we notice the very top scar which was stuck in short hair is already off! This was the confidence booster I needed, possibly Ellie also, that this will work and it will be ok. It turns out the peroxide and scrubbing/washing head hasn't been traumatizing like I thought it would be. Ellie sits hesitantly and Ryan has a special touch and talk with Ellie. She lets him do it with very little fuss. She says she doesn't want Dr. Menezes to have to take them off at her next appointment. I don't blame her. This is one time she fully understands what we explained to her and she's cooperating without coaxing. I also don't want to have to do it down there. Going to so many appointments already wears on you and then having the anxiety of that on top would not be good for anyone. It's nice. I think this is all a part of the progress she is making by meeting with Ms. Struck, the school counselor, to talk about her feelings toward all this. I'm thankful for everyone helping us through this. Thanks to those supporting me personally now that I find myself dealing with it emotionally. It's much appreciated. Love you all!

X-ray update

So early the next week after we went for the MRI I received a call from Dr. Menezes's office saying he wanted to see us Friday. I was leaving town for the weekend so we rescheduled for this past Wednesday. I had the day off for Veteran's Day so we took that advantage and went to Iowa City. He wanted an X-ray of Ellie's head to check on things. He also wanted to see us because she has spots on her scar that aren't healing. So we got there and they gave her some medicine to help her relax some so they could look at her head. While she was struggling a little with taking the medication she asked if they were going to go inside her head. I guess she wanted to make sure they weren't going to open her head up again. So I of course reassured her they weren't, that they were just going to look. She was cooperative but she had to be the one that moved her hair out of the way and no one could touch it. So we had a good day, not forcing her to do anything. The docs were able to see her scabs and told us what to do to help them come off. We have to put hydrogen peroxide on them and try to soak them with a wash cloth and peroxide, then when shampooing her hair try to scrub them so they come off. They asked us to come back in 3 weeks so Dec. 4th we have another appointment to check on the scabs. I have a feeling if they aren't off they will be scrubbing them to try to get them off down there. Oh the anxiety of what will happen in three weeks if we can't get them off, and the anxiety of trying to do this every night with Ellie.

Last night, our first night of doing this procedure, it was so sad. She was upset and said, "mommy I wish you could have the scar". This is heartbreaking. I told her I wish I could have the scar too. I wish I could take it all away from her and have to deal with it myself. So now we must continue on, every night trying to soak her scabs and scrub them off. Something good though is that I have noticed since Ellie has been meeting with the guidance counselor at school once a week to talk about everything that has happened to her, Ellie has been able to talk to me more about her feelings and tell what specifically she is afraid of. So this is very helpful. I'm hopeful this will continue and we can work through all of her fears.