Monday, October 23, 2006
Well after 3 hours of sleep another day arose for more tests. They had her hooked up to an IV 1st thing for her MRI that went smoothly, next it was x-rays of her legs and hips. We got results later that day, x-rays where fine, MRI came back with two things. One- they found a small lesion in her Cerebelum which they said was there at her 1st scan a year ago(which we knew nothing about) and it was the same size so no worries(yeah right, that is all I have thought about)! Next thing was something like Malutrations(I have no idea what he said) but he described it as the developing nerves in your brain, said hers where a little behind, so probably why she is not developing right on track. Anyways these 2 things are still no cause for Infantile Spasms. Great news was there was no Tumors or any signs of a Stroke.......YEAH!
Come Thursday they had us in for more tests, 1st one being her EEG. It read terrible lots of seizure activity. Her Neuro was in the room during this, watching it as it went we would see foot and arm twitches that where reading as seziure activity, also still showing hypsarrythmia. But there was NO focus point still generalized and multi focal seizures. He upped her Topamax again totaling 250mg a day....Yikes! Later on that day he ordered a massive lab work. They sent off 7 different tests. Some I heard where Chromosone, Acid, Liver, Kidneys and such. Still waiting on results, the only one we knew of that came back a little high was her Lactic Acid it was 3.2 and its suppose to .5- to something, he wasn't worried. Supposedly that test is how she metabolizes her meds.
Come Friday Cameran was ready to go home. She did make a few friends while there one little boy in praticular named Joshua(sweetie pie 28 months) he got dx w/ Cancer that same Wednesday that we where there. He looked like an angel, bleach blonde hair, crystal blue eyes and fair skin, beautiful! You would here him call out Camry(thats what he called Cameran) looking for her wanting to play so we would take them to the play room. We where on the Cancer wing for kids they where all so sweet! Here's daddy taking the morning rounds of her daily walk that she loved. This was the only thing we could do to keep her from fussing. Late at night mommy was making rounds around the nurses station in the wagon. She was set up pretty good just give me my blanky and I'm good to go! After 20-30 circles everyone started to know us very well. Cameran was letting everyone know that she was awake as she was letting out her only sound she does EWwwEwwwEwwww. Sounds like a little howling puppy dog the nurses loved it.
Cameran had a PT come in and evaluate her walking and balance then later the Neuros came in. What they told us was going on was that she was on too many meds and her body was showing for it. (Hello is that not we have all been saying/thinking). They called it "Ataxia"(sp?) otherwords loss of cordination. They believe it is the Topamax causing it so we are weaning it. The weakness ended up going in to her right leg also. She was doing lots better on Friday so we opted to come on home late that evening. Cameran was very excited of this she was smiling and alughing while walking out of the hospital, those arms and legs where just a going. Come Saturday morning she was ready to move around, she was up trying to walk 1st thing but was still not able. But Sunday she was on the roll of not giving up....Our little fighter! Here's Cameran with Mrs. Yolanda "YO" her favorite nurse. She smiled every time she came in! She was 1st walking out at short distances but she was getting there it was like she was learning how to walk all over again! And today, well she is back to her old self again she is walking with kind of a stiff leg but she is healing and thats wonderful!
On another plus we are down another point on the ACTH and its showing the girl is gracing us with those beautiful smiles again and even some laughter...music to our ears! We hope it all continues, oh and more good news is that the seizures are down to 5-11 range! Hope to soon see those seizures dissappear!
Happy Fall! To see our Family Montage click here:
Our Sweet Little Angels
Tuesday, October 10, 2006
On another note her BP was fantastic this week 86/42 a definite improvement! She is also now off the Vigabtrin can we say WHHHHHHOOOOOOOO! Finally one less med. This week we will start the ACTH wean fianlly. I will be so happy to see that med go! I hate hearing the horrible moans and moods she has been going through while on this. Not something I would ever do again! We will just be glad to have our baby girl back again. Here's another before and after picture:
Monday, October 02, 2006
She is our "Mini Sumo"
I have a new face I can make again:
My Kissy Fish Face! She use to do this back a few months ago but of course with Infantile Spasms things come and go and come and go again. Its like seeing it all for the 1st time again.....We love it all, old or new, shes just the sweetest!
Cameran has really been tired alot here lately, probably due to the Topamax increase now on 200mg a day. We will be so glad to finally get rid of a few meds, easier said than done right. Less meds means more seizures for her. Maybe we can find one that can hold them down so we can get her off a few! My new hiding spot:
Every time I open the dryer to put clothes in, Cameran always beats me to it! Climbing and holding her balance once in, thats great practice for PT. Which she has been doing very well in those classes. She's really been working those muscles! Ok now here is the last picture. This one does not even look like Cameran she looks huge here!
What a Chunky Monkey! Her BP was up this week 125/40 something. They couldn't get an accurate reading on the bottom after 4 tries. We are awaiting her Neuros responses.