Sunday, May 9, 2010 1:27 PM
Another Beach trip vacation is over. Yes, its nice to get away, but it wasn’t the greatest of our vacations we’ve ever had.
As far as seizure activity it started off okay – few seizures seen. But it also started off with yucky weather, VERY windy, then the rain came (both literal and figurative).
Our drive down was nice enough. Rebecca seemed to enjoy the ride. She didn’t sleep a wink on the ride down, but instead just looked out the window and watched. At one point we stopped at a rest stop for a potty break (for the grown ups, and a clean pull up for Becca). While waiting on Daddy to come back to the Truck, momma spotted a lady with a dog, so I walked Becca over to where they were sitting. The nice lady got up and walked the dog over to Becca and let her pet the dog. Daddy was coming back, so we thanked the nice lady for letting us pet her doggie. Sunday was mostly R&R – we hit a few of the same ole gift shops we’ve hit a dozen times before. Ya know what – not much changes year to year.
And not too much was open so we didn’t do too much. Monday we actually made it out to the beach. Its a funny thing out there, folks who don’t know any better hear that the house we were staying at is
4 lots back and think that is close. They don’t realize how much protected dune space is beyond that – that is at least 2 or 3 more lots worth of homes (and those dunes are HARD to walk over!). Becca did great and did most of the walking to the beach. We hung out on the beach for a little bit Monday, but due to the wind didn’t stay too long. Becca didn’t eat too much sand, but did play with it! Tuesday was our day to drive up to Manteo and visit the Aquarium – and the “Christmas Shop” – famous among any regular visitor or local to the OBX. Really a must see – its MASSIVE. Rebecca was actually more interested in the Aquarium this year than in years past. Tuesday was the start of the rain – it POURED most of the day – it was also when her seizures started getting bad. Wednesday was the day we went out to the beach again. This time it was nice and sunny. We stayed out there for about an hour before heading back for lunch. We lathered up Becca with sunscreen good – and when she was taking a catnap on her beach towel I used mine to cover her up and shield her from the sun. Its a darn good thing I did – saved her from getting as much sun as Daddy and I got (which was WAY too much).
Becca had fun playing in the sand – eating some, but cramming more into her ear of all places.
Thursday we rode down to Ocracoke but that trip turned out to be a bad idea. I think we’d all gotten too much sun the day before. We rode the ferry down, drove down to the village, too her picture by the lighthouse and visited one gift shop before deciding no one felt good and heading back to the ferry and driving back to the house. OH well. I don’t think Becca understood why she was in the car all day. Poor thing. OH we did start our day with a YUMMY breakfast out. Friday was more chilling out at the house. We did get Becca into the hot tub – which she liked, once she figured out she wasn’t getting a bath. Hahah!!! Some good things with Becca
She sat in a regular chair whenever we ate out, or even at the house at meals. We may have used a booster once or twice, but overall she just sat in the chair like a big kid! And she was almost always oh so patient waiting on meals when eating out. Only really that first night when we got into town and decided to eat out and then get groceries was she harder to control and that was because she was soo tired. Whenever possible coming out of shops and stuff, we let her walk. If Daddy had one hand and I had the other, she did AWESOME going down stairs – even doing reciprocal steps going down a few times!!!! The house we rented had an elevator, which in the end make it really easy to childproof the steps – we put the gate we brought at the top of steps in the den area, and just didn’t use the stairs. She could run around the den all she wanted. But when we used the elevator Becca became our official button pusher. She would use isolated index finger and push the button to call the elevator (with some help the button wasn’t that easy to push, thank goodness!).
She had a BLAST just doing laps in the den, “running” around the sectional sofa. It was so cute. Who knew that such a large open room would be so much fun for a child. That, and of course I pity the poor cleaning crew because they will have some finger prints to clean off the windows – hahaha. She LOVES to look out windows, so large sliding glass doors are just a dream come true for her.
On the way home, we knew she was trying to have a bowel movement -but it turned out it was much worse. To the point we had to pull over at the next exit. Thank goodness there was a hotel right at the exit. I gave Daddy a fistful of wipes from the container and left him to clean the car seat and took Becca and dragged her into the lobby to find the bathroom.
Again – thank goodness I already had a spare change of clothes readily accessible in the Truck.
I will probably call the Neuro this week, she has been having a lot of seizures lately. And at least some of the ones I’ve seen I am fairly certain are tonic-clonic.
Keep her in your prayers that we stop the seizure monster.
School year is almost over – Pre-K is almost done.
Wednesday, May 19, 2010 4:26 PM
So this morning we had Rebecca’s Kindergarten transition meeting. Mostly this was some formalities of signing some new forms since her IEP had recently been done. I also got to fill out her Kindergarten registration forms. But I also got to meet, and spend some time with her teacher. Rebecca will be in a class next year with other children who have other significant handicaps/delays (some of the older children technically being labeled as MR – but little ones like Becca are too young for that formal diagnoses). The teacher, and her aids are GREAT! Rebecca is gonna love them. And from what I’ve learned about her future classmates – Rebecca is gonna fit right in – and have her work cut out for her as far as being the Queen of the classroom (she has been the only girl in the class 3 of the 5 days for this year, and the only girl at all last year!). So not being the queen of the class is gonna come as a shock to her. I got her School picture back today. I have to give major Kudos to Lifetouch studios. Ya know for as much as people say negative things about school pictures – these folks really do have a knack for children with special needs. Ms. Jones had told me they took time with her and were oh so patient. They got a good shot. Sure, she isn’t looking at the camera giving a smile – but that isn’t Rebecca. What the captured IS Rebecca. In all her sweet glory. And she looks so grown up, sitting on the bench, holding the bear for a prop. I was worried she would eat the doll they had as a prop (the doll as a prop was one of the options for the pictures), so I gave the teacher one of Rebecca’s bears. Surprisingly enough she isn’t eating the bear. Seizure activity isn’t too bad right now. This past Saturday was REALLY bad – one of the worst I’ve ever seen. But since then its been pretty good.
Wednesday, June 9, 2010 8:00 PM
Rebecca had her last day of Pre-K today. A bittersweet day for any parent. I’m going to miss all the fabulous staff at Pearsontown. Words can not express how good ALL of those people have been to her.
Even staff who don’t even work in the Pre-K room, or aren’t even in the EC program know her and love her. Yeah I’ll miss them (But sorry folks – I cheered for saying goodbye to the parking situation).
She will have 6 weeks off for break. During which will be her 5th birthday coincidentally. Then she will be off to what has been referred to as “Big School” (a term coined by those in the Pre-K program for Kindergarten itself). Her new school is going to be Easley Elementary. Its on the other side of town, but the teacher is fabulous and has been in this career field a long time. Rebecca will also still have the same OT, since Erin splits her time between both schools. This consistency will be good. Not necessarily because its hard for Becca to adapt to new people – but because its hard for new people to figure out Becca. Becca is a world class cheater when it comes to working hard for PT and OT. She is a challenge. It takes a gifted therapist to be able to work with her. To be willing to keep trying new things – even throughout a singular session. I love my child, but she is stubborn, and not every teacher or therapist understands her or can work with her. So I am so very glad that we will have the same OT that knows Rebecca and works well with her.
Rebecca has come so far lately with many of her skills. She is using her hands better. Her left hand is more relaxed. We’ve even seen the pointer finger show up when the hand is on the table. Not so much pointer finger for activating a toy – but she can isolate pointer finger. She will fairly easily isolate pointer on her right hand and use it, but she needs a little help steadying her hand or arm. She has FINALLY learned how to put toys into a container! She also continues to be so aware and alert. It is beyond amazing. Even our Neurologist saw it and was overjoyed by this.
Saturday, June 19, 2010 8:21 PM
We had Rebecca’s 5th Birthday party today. Prayers were answered – I don’t think she had a single seizure during the party. She was actually able to enjoy family and friends coming to see her and celebrate her birthday. She helped open presents (although she was still more interested in eating the paper, but oh well). She did get tired, and went down for a nap before all of her guests had left, but David and I are overjoyed that she had a great day. This is truly one of the greatest Gifts from God for her Birthday. I can only hope and pray she has many many more days like this – where she gets to run around from toy to toy, or person to person having FUN! Being a kid. After her nap she got to have her cupcake. I captured a very adorable series of pictures of the cupcake progressing from a whole cupcake to mere crumbs (too bad I didn’t have minutes or seconds instead of a date stamp). They would make a really cute flip book. Hahaha She was so excited with that cupcake.
On another positive note – she is continuing to be very expressive. Although still not verbal, I can tell she is TRYING to communicate more. She is certainly getting better at answering yes and no. If you ask her something and the answer is yes, you’ll usually get a grin and a nod. If that isn’t an affirmative – well then I reckon I don’t know what else would be.
She also continues to babble quite a bit, as if trying to talk – esp when upset. For instance, at the end of the school year her Pre-K teacher had no idea what I’d fed her at the end of year picnic. She asked her “did you have hamburgers” (Rebecca continued making whatever noises she was making) “Did you have hotdogs” (Rebecca got quiet) I reentered the room – and Ms. Jones asked me which she had – of course the answer was Hot Dog!
Please keep her in your prayers that this wonderful – fabulous God Given Streak would continue!