Saturday, June 9, 2007 7:24 PM

 

We got a chance to talk to Dr. G about her more recent MRI lately. It showed the optic gliomas are still showing improvement. He measured on one side and it was originally 12mm and it is now 7mm. The enhancement is now almost gone.

We are still struggling with her seizures. We recently added Klonopin. We also increased the dose of her Phenobarbital. Hopefully this will get things under more control so she can have more developmental improvements. Still no independent walking. It almost seems as if she is scared. Anytime you try to get her to stand by herself, the moment you let go she either reaches for the nearest object (ie couch) or sits down. The good news is she doesn’t fall down anymore, she has a controlled sit and protective extension reach with her arms.

We are also seeing a lot of improvement with her interaction with toys. She is much more interested in her environment, exploring toys and playing with things. I can’t believe my baby is almost two. Just a week and a day until her birthday. Prayer requests would be that she is able to enjoy her birthday this year. She had so many seizures during her first birthday it really put a damper on the day’s festivities.

Thank you friends and family for your support!

 

Saturday, August 11, 2007 10:27 AM

 

Things are still going well. Not much in the way of changes or progress. She is babbling quite a bit and you can hear more and more words starting to emerge.

She had her MRI the other week. We should know some results either this Tuesday or next Tuesday, since we have visits over at Duke those days. Rebecca did have her 2 year “Well Baby” pediatrician visit this week.

Things look good. Rebecca is in the 12% for height and 20% for weight. So we will continue to give her pediasure when she isn’t eating enough. We will go back to the ophthalmologist in September. The doctor will reevaluate Rebecca’s Stabismus and Amblyopia. We haven’t been able to continue patching – Rebecca just pulls the patch right off. Please continue to pray for her seizures to end. As she is getting more mobile, and spending lots of time standing, and cruising, her head drops are becoming a little problematic. Our poor baby keeps hitting her head on things. Or the head drop throws her off balance and she falls down.

 

 

Tuesday, August 21, 2007 7:14 PM

 

So today was another one of our long days at Duke. Normally in the day hospital we are just in one of the chairs, and David and I have to take turns being back there with Rebecca (only one adult allowed back there with a child, unless you are in a room). Well after a while the nurse said they had a room open, and if we wanted to use it, we could. This is a RARE event, so I took it. After a while David gets back. I was talking to the woman who used to coordinate the study for seizure medications Rebecca was in (before she started on Chemo). I called her and told her to stop by and say hi, and see Rebecca. I seriously thought David had Rebecca. But she was quicker than he was. Well, all too fast, our poor baby fell off the bed. She landed on the base of the IV pole (can we say, mega major OUCH). Of course several nurses came in, and her nurse practitioner came in and did a thorough check to make sure nothing was broken. Our poor baby!

She screamed for a good while, and then calmed down and fell asleep.. She isn’t even any worse for the wear after we got home. She is still just as rambunctious and wild as usual. She has a few bumps, but nothing more than the average two year old has.

And she has been proving herself quite normal in that area lately!

BTW – the MRI shows things as stable. I guess that is better than things growing, but not as good as shrinking. All of my prayer warriors, please pray the tumors start shrinking again.

 

Friday, September 7, 2007 6:14 PM

 

Rebecca has been doing well the past couple of weeks. The day after her big fall, she was totally fine.

I find myself laughing a bit that she is so significantly developmentally delayed, yet somehow she still hit the terrible 2s right on target! How does one manage that?

I think we are getting even closer to her walking by herself. On labor day I took her to see Pop Pop and Grandma Jacky. She loved holding onto someones hand (mostly just a finger) and walking all over their house. It was so cute. She even walked down the front sidewalk, just holding onto my hand. This week David and I have seen her let go of things more and more, and just stand there for a few moments, and taking a few more independent steps. so far the most she has ever taken have been 3 full steps by herself. I just know she is waiting until no one is looking. That is just how she has hit all of her other major milestones. I guess she has to practice first.

If my friends and family could please pray for my patience with her. I’ve found that the more she exhibits the 2 year old terrors, the more frustrated I am getting. Also, I think I am just run down buy all of this seizures, physical & occupational therapies, and medical stuff. I know other parents of kids with special needs (medical and/or developmental) know exactly how I feel. Some days are just hard.

Keep on praying for Rebecca. We want those seizures to stop! It is very hard for little girls to learn to walk when they might have a head drop/seizure and fall down and bump their head. owwie.

 

Thursday, October 4, 2007 9:53 AM

 

Rebecca is doing well. I know I don’t update much, but most days are pretty much the same as the last for us.

Right now we are trying really hard to get her a helmet for her seizures.

The hold up is of course in the red tape. We are blessed that since she is young and still has services from Early Intervention that there is funding from Early Intervention to pick up where Insurance leaves off. This is good, because Insurance denied her the helmet because they said something about it being “Environmental” (I wasn’t on the call, it was between the vendor and the insurance company). I’d like to know what the insurance company expects us to do? Pad the walls and floor with foam? would they pay for that since they won’t pay for the helmet? (note the very thick sarcasm).

Similarly we are still trying to get her a bath chair, a special seat to fit in the bath tub for kids with special needs. Kind of like a lawn chair. There are all kinds of attachments you could buy for kids with more physical involvement, but mainly we need one with the seat belt so when Becca has a seizure in the bathtub she won’t instantly go under the water. The first vendor we were trying to use wasn’t working out, so we switched.

Fall is here! YEAH! I am so glad.

 

 

Friday, October 12, 2007 12:14 PM

 

Fall is here!

Of course this means it is also the time of year Rebecca is getting lots of little colds. It seems like she just got past the last little bit of the stuffy sniffles and the next one has started. And because she is so young, all we can really do is use lots of saline and keep using the “mean” bulb nose suction thing (or as I call it “snot sucker”). Thankfully she hasn’t gotten any fever with this. I am trying to make sure she is getting lots of extra naps and rest so we can keep this little bug at bay.

Chemo again on Tuesday (the 16th). As she gets older it is getting more difficult – just trying to keep a wiggly toddler entertained for so long. It isn’t like we can just let her get down on the floor and play. And even if we tried to set her up a nice comfy spot on the chair she would try and climb out.

 

Tuesday, October 16, 2007 6:16 PM

I just had to post how big she is getting

Our little girl is

34 1/2 ” long and 25.6 lbs

And we just got her new shoes – she is in a size 7.5 (toddler shoes).

She is a long skinny kid.

It seems like the last time she got Chemo she had just jumped to 33 inches, and this month she shot up another inch! She really is a growing girl!

She is dong okay tonight after Chemo. Really sleepy, but okay. poor kid didn’t take a nap today. I guess she couldn’t get comfy to take a nap while she was in clinic. Poor baby. We got home and put her in the crib and she went right to sleep.

 

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