Monday, October 4, 2010
At 4 1/2, my daughter said "I love you" for the first time.
And yes, I cried. :)
Saturday, September 18, 2010
Thursday, August 5, 2010
I really don't want to think about how safe that water may or may not be to play in.
Daniel's kitty cat (or as he says it, "kee-cah"). Kitty Cat is to Daniel what Puppy is to Julia. Aww.
And now for the actual blog part:
Friday, June 25, 2010
Some of Julia's best language comes while we're in the car. Granted, we're in the car a lot. Whether it's going to and from school (she and Daniel are both in summer camp), to and from speech, physical or occupational therapy, to and from the gym, the farmer's market, the grocery store, it seems like we're always on the go.
Today on the way home from school I heard "Why is Daniel's shoe off? Why is Daniel's sock off?". I was beaming from ear to ear. The sentence structure! Amazing! We got home and sure enough, Daniel had taken one shoe and one sock off, leaving the other ones on. I'm getting a lot of "why" questions from her these days which I love. She's always been more of a factual kind of girl, happy to point out what's going on around her but never really questioning why. Now I'm getting "why why why" all the time...and of course now I'm encountering the familiar parenting frustration that usually ends up with "I don't know why, it's just the way it is!"
Another backseat gem...Dora the Explorer is HUGELY popular in our household right now. Not only does she want it in constant rotation on TV, but she wants her Dora blanket, Dora backpack and Dora book while she watches. Dora went swimming on a recent episode and Julia ran upstairs, put on her bathing suit and came down to watch the rest of the show. Daniel even has jumped on the Dora bandwagon and adorably says "Oh man!" when Swiper appears. So the other day, in the car, what do I hear from the backseat? "Uno...dos...tres!" See, who said TV wasn't educational.
Medication wise she is doing well. We are now in the stage of the Vigabatrin wean where she's only taking 250mg morning and night. She hasn't been on that low a dose since she was 18 months old. I have a love/hate relationship with lowering her dose, to say it puts me on edge is an understatement. No seizures have been noted but I still haven't let my guard down and don't know if I'll ever be able to, quite frankly. In the first few days after this dose decrease I was worried about some behavior I saw upon waking. Her right leg was twitchy and the timing and look of it was too similar to what we saw with her seizures for comfort. I emailed Dr. C about it who suggested an EEG (groan), talked to her local doctor who said it was probably not a seizure since she was fine otherwise (better), and after a few more days it went away. So whether that was the right approach or not is debateable but so far so good.
So that's what's going on lately in our world. I will try and be better about updates, I know there's a lot of people who are rooting for our girl and I don't want to leave anyone hanging.
Sunday, March 14, 2010
The other morning I was driving Julia to school. All of a sudden a car pulled out in front of me and I had to quickly hit the brakes. Before I could say anything, from the backseat I hear Julia say..."Oh shit!". Although I was horrified my potty mouth while driving had obviously made an impact, it was too funny to not laugh. Which was probably the wrong reaction...the light in her eyes once she realized she'd said something funny probably means we'll be hearing it a lot from now on. Note to self...stop cursing!
So it's now been about a week since we came down on her Vigabatrin dose, we're now at 1000mg/day down from 1250mg/day. Again, we are already seeing a very positive difference. More energy, more speech, just more more more. Amazing. We are nervous though about this weaning process...Michael and I both can't help but remember the awful seizures she had in the hospital right before surgery when she was totally off of it. We just have to remind ourselves that we're dealing with an entirely different brain now. One that has far less nasty stuff to try and control. We may take the wean much slower than the guidelines Dr. C gave us, just for our own peace of mind. I'm going to talk to her local neuro to see if there's any validity in that line of thinking. But so far, so very good.
Monday, March 8, 2010
The final EEG report showed no spiking or seizures when she is awake. However...when she is asleep there is "intermittent spiking in the centroparietal area". Dr. C said that is probably coming from the motor strip where we did the MST. He wasn't overly concerned. Ideally we would have no spiking at all but he said that it's quite possible that over time the spiking will go away because it has nowhere to go now. I was concerned that we wouldn't want to wean her Vigabatrin after that, but surprisingly he said let's do it. That she is not at risk for infantile spasms anymore and the Trileptal should be appropriate for controling the spiking. So we are going down in 250mg increments every 3 weeks or so (I may stretch it out to every 4 superstitiously.) If we see any weird behavior, call him, but otherwise do a repeat EEG after the wean to see how things are and go from there. Other than that he said she looks great and to push the speech therapy, which, you know, duh. :)
So glad to be home and have that behind us for now!
Friday, March 5, 2010
Once the EEG techs came in to get her wired up the fun began. There was a lot of tears and they ended up having to use the papoose board to keep her still. But after all the leads were attached it only took some hugs from mom to calm her down and we settled in for an afternoon of more TV watching. There were only a few times she tugged at her cap and she did say at one point that her boo-boos itched (she kept pointing to her head and saying "my boo-boos"...so cute!) But other than that she was happy for the most part to stay in bed playing with some of the goodies I bought in the gift shop, napping or watching TV. The hospital food was a big hit as well...chicken tenders and fries for lunch and a quesedilla and fries for dinner. What more could a 4 year old ask for?!
Her neurologist didn't have time to stop by but did call me around 5pm. She said she'd been taking peeks at the monitoring and that it looked very good. No seizures, not that we expected any. I asked her if she saw any spiking and off the top of her head she said she didn't think she saw any...which is awesome. She'd also pulled up her last EEG prior to surgery to compare and said it was like night and day. I was able to view the monitor myself for a little while immediately after they hooked her up. It was hard for me to make sense of what I was seeing since she was still crying, moving around, etc. But it did seem very different from what I was used to seeing before.
She fell asleep around 8pm and I shared her hospital bed with her which made for a GREAT night's sleep as you can imagine. :) We were awoken right at 6am by another EEG tech to get her leads removed, were dressed and out of our room by 6:30 and out of the hospital by 7am. It was great.
So no official results yet. We are leaving for Detroit on Sunday to see Dr. Chugani on Monday. Hopefully there will be something ready by that point that can be faxed to him so that we can make some decisions on weaning her Vigabatrin. I am just so relieved that part is over.
Wednesday, February 24, 2010
- The things that come out of her mouth nowadays never fail to crack me up. I really shouldn't laugh, it's not funny...but it's nearly impossible to keep a straight face. Her favorite word for the longest time has been "NO!". Whether it's telling her it's time for bed, time to go to school, time to sit on the potty, the first response is usually a firm "No!" To which I often say "Don't tell me no! Yes!". Yesterday as I was getting her in the car for school she was saying "No school!" and I was responding with "Yes school!"...to which she said..."No tell me yes!" Hilarious stuff.
- Bath time is still a favorite, for her and Daniel both. The other night I asked "Julia, are you ready to get out?" And she very politely responded..."No...no thank you".
- We were driving home from therapy Monday night...I was lost in thought trying to figure out what to make for dinner. I caught Julia's reflection in the rearview mirror and she was looking at me with a concerned expression. She then said "Mommy, no sad...be happy!" I said "Mommy's not sad honey...see?" and I smiled at her. To which she responded..."Yay, Mommy's happy!". She is so concerned with other people's feelings lately. I stubbed my toe last weekend and she started crying because I had a boo-boo.
Yesterday we had quite the scare...I got a call from the school nurse that she had tripped and hit her mouth on the corner of a bookshelf. Her top front teeth were loose and she had bit through her lower lip. We took her to the ER to get checked out and thankfully she didn't need any stitches. We also saw her dentist later that day and he feels like it will be okay...in his opinion the teeth will probably not fall out. They were pushed back and may even go back to normal. Going to the ER was pretty traumatic for her...there is no doubt that hospitals have a bad association for her. It will be nice to be on the other side of next week's EEG.
Tuesday, February 9, 2010
Our schedule is crazy with physical, occupational and speech therapy each twice a week. Her physical therapist told me last week that Julia had met all of the original goals set that were surgery-related. She no longer is showing any right-sided weakness when it comes to walking, climbing, etc. So now we are going to work on meeting age appropriate goals...she is still clumsy, still cannot jump with two feet, stand on one foot, etc. It was very exciting to know that she has come so far in a relatively short period of time.