Friday, April 11, 2008

Zoey saw her neurologist today and........

 Dr. Kim was very pleased with what he saw! Today was an extremely long day for all of the Needham's , especially Zoey. But boy was she a trooper as always. We started our day VERY early as to have Zoey sleep deprived for her EEG. Traffic into LA was horrible and we were sure Zoey would fall asleep in the car, which would not have been good! However I sat in back with her and the two of us just spent a little quality time together and she stayed wide awake. By the time we arrived at CHLA she was not a happy camper. She hated having her head held and wrapped but finally the exhaustion set in and she gave up. Slept like a dream. Woke up happy and then we had a  2 hr wait till we saw her doctor to review the results. That was o.k. as we ran into a few people who had not seen Zoey in a while.  It was so wonderful to catch up with them because each of them had been such an important part of this journey with us in one way or another. Like Edward, a respitory therapist that tried something he didn't often use that ended up being the difference between Zoey having to be re- intubated and not, after her heart surgery. We will never forget him for that and will always be thankful. Or Gaury, a resident who saw me one night after a long day in the NICU and she asked me if I was alright. I replied, yes I was just struggling with whether I would ever understand why we were going through all this with our baby. She said " One day Zoey will show you why." I reminded her of that today. It was one of many  defining moments in my journey this past year. We said our goodbyes, had a quick lunch then back up stairs for her appointment. Well, that's when I started to get nervous. What if there was no noticeable improvement? What next? Dr. Kim walked in and said yes we would be continuing for 4 more weeks, upping the dose to .15ml 2x a day and although he said her hypsarrythmia was not completely resolved it was on its way there! Oh, my gosh.... we were so thrilled. He said if he had to compare the EEG on the Vigabitrin vs ATCH he could only approximate , as it is subjective, but the Vigabitrin showed a 10% improvement while the ACTH showed a 80% improvement! Wow, that's all I can say to that. So, we'll take the 4 more weeks if that what it takes to rid my child of these nasty things.  She looks great and is weathering this treatment beautifully. There are moments, believe me but maybe we are on our way.Maybe she is on her way. I think I can see it in her eyes. I know I see it in her reemerging smile. I am of course very guarded with my enthusiasm. I have been taken out at the knees too many times before. I will continue to worry even if she kicks this thing. Will it come back? Will it evolve into another type of seizure disorder? Because they often do. I will always and forever worry about this child but for today, tonight, I will take it for what it is , a day that yielded some long awaited good news for this precious child . Thank you to everyone for all yours prayers and support, please keep them coming, there can never be enough. Tonight we will all sleep well and I will feel like I can take a baby breathe, a sigh of relief, for at least this moment.

5 comments:

Dawson said...

What wonderful news! We will continue to pray that the ACTH will do its job and rid little Zoey of these seizures. Tahe care & God Bless!

Allison & Jeff

Ian Marrey said...

I'm smiling for you too.

All the best

Ian

rae said...

Yeah for ACTH!!! ACTH is what did it for Sam too. I am so glad to hear about the awesome improvement in her EEG.whooo hooo. big hugs to you all.
rae

Lindsay said...

Heather!! So glad I was able to find this. So happy to catch up on what is happening with Zoey. Sorry to post this on here, but I lost my phone while in Miami at the end of March and have gotten a new one, but lost all the numbers on my old phone. I still have the same number, when you have time (I know you guys are so busy) would you mind giving me a call so I have your number again? Thanks and again so happy the appointment went!

jotcr2 said...

That is great news. The meds take time to completely re-set the metabolism of the body, which helps clear the hyps, so at 80% improvement is a v. good result. Stay strong for the next 4 weeks. After this, your life will be easy.