Saturday, March 21, 2009 6:38 PM
Just wanting to let everyone know how well Rebecca continues to do with her walking. She isn’t all over the house – but we do keep her corralled to the den. But she can walk wherever she wants to in the den without help. The rest of our downstairs needs MAJOR childproofing, since Rebecca loves to grab anything she can get a hold of and put it into her mouth. This means ANYTHING on a table, or ledge that she can reach. And trust me when I say, you should never underestimate this child’s reach. So for everyone’s sanity, her world is the den (plus it is carpeted in here, so some padding for falls).
She has started doing a lot of babbling – baby talk if you will. She is doing her little chatter constantly. Its so cute. Very Pre-Language/Pre-Verbal.The cutest thing is her laugh. All you have to do is make the raspberry noise and she howls with laughter. the more you do it, or the longer you do the sound, the harder she laughs. her laugh is contagious, so before you know it you are laughing. Then she is laughing at you! It is all great fun!
Only another week before we go back to Duke for the SPECT scan, A special type of scan to try to find the focal point for her seizures. We’ll be inpatient for a few days (any of our friends who are often at Duke, if you’re there the 30th or 31st look for us on the 5100)
Becca’s ophthalmologist, Dr. Young wants us to consider the surgery forStrabismus. This is the misalignment of her eyes that prevent her from having binocular vision.
Guess that is all I have to update for now. Happy Spring!
Saturday, March 28, 2009 4:37 PM
Just wanting to ask for your prayers since we head off to Duke on Monday for Becca
to have more seizure monitoring done. This is all to try to determine a focal point for
her seizures. We don’t know how long we will be inpatient. Basically until they capture what they feel like they need to capture. Doctors want to know if their is a focal point that can be safely removed to reduce or eliminate her seizures since medication is not controlling her seizures. Pray that we keep our sanity. it is hard to keep Becca from chewing on all the cords and wires, and to keep her happy, contained to the hospital crib bed. and for David and I, just being stuck in the room. David goes back and forth between home and the hospital, and that get tiring for him (esp since he also adds trips to work for partial days at work).
Becca continues to play well, and loves playing with all her toys, and toddling all over the den. She has the most wonderful belly laugh in the world, and it is so much fun for David and I to get her started laughing (blowing raspberries at her usually does the trick).
Sunday, March 29, 2009 1:19 PM
I just got an urgent prayer request from one of my friends from my Infantile Spasms message board. Her Daughter Maddie is in remission from Leukemia, but is currently in the PICU because she is septic
She is a gorgeous little girl. Please pray for her healing, and for strength for her family as they pass through another trial. thank you!
Wednesday, April 1, 2009 1:06 PM
We are here hanging out at Duke, Becca has had both of her SPECT scans – they do an ictal spect and an inter-ictal spect. Basically for the 1st one they wait until she is having a seizure, inject her with the (radioactive) dye, and then go do the scan. Then 24 hrs later they inject her again when
she is NOT having a seizure and do another scan. Then they will run some fancy computations to subtract one from the other. The scan detects blood flow in the brain (or something like that). Tomorrow we go for the PET scan – and my poor child will once again have to become radioactive (she already growls like the Incredible Hulk now she is gonna turn green). This scan is also done during a period when she has NOT had a seizure for something like 1 hour. I know the PET is compared to the MRI to see brain function. basically with all of this they are trying to determine if her seizures are localized to one area, and if so, would that be an area that could be removed to give her a great shot at having no more seizures.
I overheard her Neurologist in the hallway when they were doing rounds before they came in, and I reckon they need to determine if Rebecca has true Lennox-Gastaut (LGS) or Pseudo LGS. I guess some kids have most of the symptoms of LGS, but the wave patterns that show up on the EEG are different. Traditional LGS patients do not respond well to resection (removing the bad part of the brain). However, patients with Pseudo LGS respond very well. They will need to carefully study Rebecca’s EEG patterns, the SPECT and PET scans and her MRIs to determine what the best course of action will be. Sometime in the next month a team of Neurologists will hold an Epilepsy Conference to discuss Rebecca’s case. Then around the first of June, David, Becca and I will go back to see Dr. Mikati again.
That is about all I know for now – the princess is settling down in her crib for now – hopefully to take a good nap. She and I both slept well last night, hopefully tonight is as good of a night.
Friday, April 3, 2009 8:05 AM
we got home yesterday afternoon. Becca went to be around 4pm. I fed her some yogurt when we got home since she had not eaten food since the night before. They have to be NPO (nothing per oral) for the sedation for the scans. She was tired around 4, so I put her down for a nap, fulling expecting her to wake up after a bit, ravenous. She slept through the night. We had to wake her to give her both her dinner and bedtime meds. I crashed around 6pm. I barely made it through dinner. I can’t believe I
slept ALL night and until 7am. (we’ll continue to catch up on rest today). We won’t know scan results until we go back to the doctor on June 2nd. For now, just pray that Becca gets the rest she needs to recover from the stress of the hospital stay. Stress = more seizures.
Sunday, May 17, 2009 8:22 AM
We got back last night from a week at the Beach (Outer Banks of North Carolina). Its kind of an annual tradition for our family. Becca tolerated it really well this time. Previously she has not been fond of the long trip there, the wind of the sand. This time she was really good! I think she really liked the sand (or it must have tasted good, she kept trying to eat it anyhow!). We got to go to the aquarium again. I know she enjoyed seeing the fish, and everything else. In one of the tanks they even had a Sea turtle that really did look like a mini version of “Crush” from “Finding Nemo”. It was really cute, and seeing the reaction of all the kids was priceless (they are how I learned he was named Crush). The water in the pool at the house we stayed at was a bit cold, but still, Rebecca did a great job in the water. that being said, one of the days all three of us were a bit chilly, so we all jumped into the hot tub after a while in the pool. Rebecca fell in love with the hot tub. I know next time we go to Grandma and Pop Pops house she is going to want to get into their hot tub (or in the words of my niece Ashlyn, “Hot Pool” – I love you darling.). Rebecca did some growing up while we were there, or at least in her mommy’s eyes. On our way home the high chair at Burger King was way tosmall, so she sat on the booth seat, right beside me! And she sat very good. For a child who learned to sit up late, and sometimes has a little trouble with trunk control, she had no trouble sitting at the table, just like a big kid. She even ate her Cheeseburger without me tearing it into little pieces! She reached across the table for her fries when she wanted one.(she did the same for her drink, but only succeeded in tipping it over, she still needs help with that task, if her drink isn’t in a sippy cup). I’ll add some pictures soon – but I’ve been informed the princess has awoken on this Sunday morning.
Friday, May 22, 2009 11:01 AM
Just wanted to update and let everyone know that Rebecca has been on fire developmentally! She has been moving non-stop. Her walking is getting soo much better. She still prefers to hold onto the wall, or your hand, but you can really tell the difference in how much she is holding onto you.
she is also making many more attempts to communicate. We have a special communication device, where I can record a message, and Becca pushes the button. Right now I have it set to “More”, so Rebecca can push the button at meals, etc, to request “More”. She fully understands how to use the button. Previous attempts the button was only a toy. Since I only have the one, I am using a card to represent “All Done”, and she is quickly learning to grab the “All done” when she is done (or in the case of dinner last night, she didn’t like it and wanted something else). Pray that Rebecca continues on this upward spike. We are used to her having periods where her development spikes, then she will plateau for a long time again. I just hope and pray that this spike lasts a long time, and that everyone involved in Rebecca’s life is able to take full advantage of it, to teach Rebecca as much as she is willing and able to learn right now. And pray for me – as my baby is doing so major growing up. Having a child who is delayed, its tough seeing her grow up. I have to remember to let Rebecca do for herself more.