Friday, May 10, 2013

Latest EEG

Sydnee had her visit with the Neuro team at Children's a couple weeks ago. During the visit I had her on my lap and the Dr.'s commented on her doing some movements (arching her back repeatedly) that made them want to schedule her an EEG to make sure they weren't suppressed spasms. I know, and they told me, that  they were siding on the side of caution in scheduling the EEG. We all felt we weren't seeing spasms, (no eye deviation was happening with these movements), but the Dr.'s felt it would be best to check out.

I did mentioned I'd seen her doing these arching moments to our PCP (primary care physician) about a month ago. I told them that she only did them when she was in her highchair, car seat  or on my lap...when she wanted out or was getting restless. That if it were Sam or any other child showing these movements I wouldn't think anything of it, but with Sydnee...I will always second guess.

She had her EEG about a week ago. I am still waiting for the results, but no news is usually good news. I know they would have called me right away if they would have seen hypsarrhythmia or more seizures. I am waiting on our next move, which is to wean her off one of her anti-seizure medications (Zonisamide). Leaving her to be on only one anti-seizure medication (Keppra). Down from 6 meds to 1.

Sydnee continues to develop as she should be. She started crawling this week and is starting to try and pull herself up. We are working towards more goals (walking furniture) in her group therapy class. She continues to amaze us.

Its been a great spring. Although Tyler has had to commute back and forth to Anacortes while the boat is dry docked, he has been home. We have about three weeks until he leaves again for Alaska. We plan to make them count. Next week we celebrate Sam's 3rd birthday. Three. Can't get over that he's turning three.

Pics from the past few months ...

Lots of helpers at bath time (Sam, cousin Carter, and Mia).
While mom's away...

Saturday, March 9, 2013

Catching up

I have lots of catching up to do so here is all our family happenings recap style;

TYLER left for Alaska January 17th. Fishing has been going good and we hope to have him home by April 1st, possibly even earlier. They are steaming the boat home to Anacortes this spring to do "ship yard" (maintenance). They do this every two years. Its hard on us because he will usually work four-ten hour days a week and the drive from Seattle to Anacortes is an hour and a half. Which means he leaves really early and comes home pretty late.

Once ship yard is over its back to Alaska so he won't really get time off like he usually does. I am however, really excited to pick him up at the dock instead of the airport. Sam will get a kick out of seeing "daddy's boat". The last time the boat was home I was eight months pregnant with Sam. Seems like forever ago.

SAM is busy being almost three. The things that come out of his mouth on a daily basis are a crack up. He is also pretty much potty trained (yay!). If we are playing and he has to go he just stands up really fast and runs out of the room. The first time he did this I was like...what the heck, "where are you going?!" and yelled back  (still running)"I gotta go potty!" He also screams "PAUSE IT! PAUSE IT!" if he's watching a show and has to go. He has even told me he needs to go potty when we were at the grocery store and he held it until we found the bathroom. I am so proud of him.

SYDNEE continues to prove to be an honest miracle. We have received nothing but good news from her recent checkups. At her last one-on-one therapy session, the therapist said she is doing everything a 6 month old baby should be doing and even sitting better than most babies at this age. I was told we can cut our sessions from four times a month to two. At this months Children's visit with the epilepsy specialist, they reviewed her last EEG with me and told me that although they see "some activity" they are not able to confirm/report definite "seizure like" activity. No hypsarhythmia was reported (important and good). They said given that her development is going so well, and if I report no seizures at home, we can postpone her next EEG for one year. ONE YEAR.

When Sydnee was diagnosed with FCD and IS, they told me that all of these things that are happening could be possible (POSSIBLE). As I've said before and as the specialists always remind me, the area of Sydnee's brain that did not form properly (FCD) will never go away. What we hope however, is that the brain has made its detour around this area and she continues to develop as she has been. I am forever being told, ."time will tell...she will guide us." --- In the meantime, I am trying to continue to stay off of the Internet when it comes to searching  for things that could come our way. I remind myself to stay PRESENT and so very THANKFUL. The one thing I hold on to tightly that I did read on the Internet is that both IS and FCD are case by case issues on how the patient will react in the present and future. I have to remember there is only one sweet Sydnee. --- We meet with the neurology team at Children's next month. I hope to have another great check up with them as well.

I am holding things down while Tyler is away. I am ready for him to come home to us. My arm/neck/back are giving to the "wear & tare" of being a single mom. If I'm not holding a 15 pounder its a 30 pounder in my arms. Work is also busy which is good. The kids are great and healthy which is perspective.

Here are some pics over that last couple of months. Thanks to all of you who continue to think about us ask how we are doing, how Sydnee is doing, and for your continued thoughts and prayers. You are all receiving ours as well.

Playing "protect the castle!"
"Headbands" ... I had one on too. All courtesy of Sam.

Super Kids!
... 2 seconds later