We're Not Off the Roller Coaster Ride Yet!

Friday Katelyn had another seizure. It had been a little more than a year and a half since her last one in the NICU. We thought they were a thing of the past for her. We were wrong. The roller coaster has certainly slowed in the last year, but we're still on the same ride and this has definitely reminded us of that.

She hadn't been herself for over a week. She wasn't eating well and her sleep patterns were messed up and she was really fussy off and on. On Friday morning I put her down for a nap 2 hours early after a lot of a screaming and called for a doctor’s appointment. Three hours later I was in the kitchen making lunch and Derek said "Mom, why is Katelyn shaking like that?" He had seen her fall down and start seizing. I looked down to see her having a grand mal seizure and turning blue. I picked her up and ran for the phone. I would love to say that I was calm, cool and collected but I was hysterical. I set her down (remembering you aren't supposed to hold someone who is seizing) she regained some color and the 911 operator tried to calm me down as she asked all of her questions about what Katelyn was doing. The good news is that she came out of it on her own relatively fast. It's hard to say for sure, but I would guess the seizure was about 3 minutes and it stopped on its own. So that is good. Her other two seizures were longer and they had to give her a lot of drugs to stop the seizing.

So after an ambulance ride with my little princess, a long and useless trip to the ER (they don't do anything if they aren't seizing anymore) we kept our appointment with the pediatrician who did some labs. The first bunch are normal - her electrolytes are fairly normal, she isn't anemic, etc.. We are still waiting for the labs to come back to tell us if she might have c-diff again or maybe roto virus.

Tuesday we'll go up to PCMC for a sleep-deprived EEG (fun huh??) and then meet with a neurologist later in the day.

Saturday was a whole new day for her. She was eating well and was much more like her normal, cute bubbly self.

The trauma of seeing her have a seizure just brought back all the emotions of the NICU days and the fear of the unknown. But knowing how dangerous seizures can be and the impact they could have on her future made it all very emotional for me.

But today is another new day. She is happy and darling as ever today and seizure free. She and I are up before everyone else today. She snuggled up next to me while I did most of this post but is now her busy-little self.

Here is the link to September 2007, to the posts about her last seizures (start at the bottom):
http://brandonandkatelyn.blogspot.com/2007_09_01_archive.html

A Handful of Photos

Katelyn put on Derek's shirt.

Brandon wanted some attention too!

Yes, those are Brandon's pants on Katelyn's head.

She loves to dress up and to take pictures.

Blake thinks he strong enought to drag them all.

A look inside the van.

A Broken Back

So five weeks ago I took my boys sledding. We had a super fun time sledding down the hill at the local junior high on a Saturday afternoon. Although the snow wasn't fresh, there was plenty of it and we had a ton of fun. But the last run of the day Derek and I hit a man made jump on the hill and flew up high and came down HARD! I've been in pain ever since, but todayI found out I have a conpression fracture. Bummer. I think the worst news is that if I had gone in right away they could have injected a superglue-like stuff into the vertibrae and fixed it right away - no more pain. But on the updside, it takes bone 6-8 weeks to heal so we're getting there.

Here we are with our matching boots!

Derek Bowling

Amy took a video of Derek bowling using her cell phone. The quality isn't great but you just have to see it.

They are porking up!

I took Brandon and Katelyn to the pediatrician for thier Synagist today. Before they can recieve the shot they have to be weighed and measured and thouroughly examined. If they had anything that could be RSV they can't have the shot and they have to calculate exactly how much to give them. So through the winter they are weighed and measured every 28 days. Kind of discouraging usually. Last month Katelyn had lost 2 1/2 oz and so we got the referral to see a pedicatric endocrynologist. But today we went in and they had both gained a pound and grown almost an inch too! And I have been weighing them myself so I really trust the weight. The pediatrician was so excited! From there the appointment kind of went south, the nurse that administers the synagis came in and said it had only been 21 days since their last shot and so we would have to come back in 7 days. Kind of a bummer for us all. The boys are out of school today and so I am sure they would have rather done something more fun than that this morning but they were really good sports!

Therapy

Because of Brandon’s stroke and loss of function on his left side we do a lot of therapy with him through our local early intervention program , Kids on the Move as well as the Utah School for the Deaf & the Blind (because of his myopia). So we have a physical therapist that comes to our home twice each month and an occupational therapist that comes twice each month, a developmental specialist that comes once a month and a vision specialist that comes twice a month. In addition to these 7 in-home visits each month we also go to a weekly class – “Motor Class” with other kids working on their gross motor skills (crawling, walking, etc.).

So when you have a child whose body doesn’t work like they want it to, adaptations are the name of the game. We started learning that almost immediately after they were born. We’ve had to learn to adapt and we’ve had to learn to adapt things around us to work for the babies, especially Brandon. We have also been introduced to the world of adaptive equipment, which is equipment that helps him get into the right position to sit, stand and start to move around. The first thing we got was a corner chair for him support and helps him sit up straight (he doesn’t need it any more). We have a creepster crawler which suspends him and carries his torso weight so he can practice the crawling motion with his arms and legs. He loves this but mostly he uses his right arm and goes around and around in circles, but thoroughly enjoys it. It is kind of funny because the therapists say his the first kid ever to even like it, much less love it the way he did especially before he was crawling around better on his own. A few weeks ago we got the the pony walker. It is like riding a very skinny pony with no legs. It gives a ton of support and he can’t fall down out of a standing position. Our most recent addition is the Gait Trainer. He loves it too. Right now he loves being upright and on the move so all of this equipment he just loves.. He wants to be walking like Katelyn, but he is getting really good at pulling up to objects. We let him practice this on the stairs. This has always seemed so funny to me. What good mother teaches their child to play on the stairs? Well I do. It is great for him to learn that process. But the other night at a friend’s house we paid the price when he tumbled all the way down a flight of stairs. We also use couch cushions on the floor and now he is really happy if you take a cushion off the couch so he can pull up to the couch. We have had to learn to be very creative and resourceful to solve problems and give him the opportunities he needs to learn what he needs to learn. The therapists and other providers have been so helpful in this.

He is such a smart boy though and you can just see him constantly thinking of how to make it work. He is very determined and motivated to figure things out. We are especially grateful for this quality in Brandon. We know it is what will make him successful in mastering these skills. So many children with disabilities don’t have this motivation or determination to do certain things.

He has made so much progress in the last month and a half. He is pulling to stand, army crawling, going into all fours and rocking and getting out of sitting without throwing himself back and hitting his head on the floor. He is an amazing and happy little boy. We are so grateful to have him in our family. He is an almost constant source of joy.

This is his corner chair. There were many pictures of him using it on the old blog.

This is his physical therapist, Besty getting him set up in the creepster crawler for the first time.

Here he is in the pony walker.

And our latest.... the Gait Trainer. This is basically a reverse walker with a harness

Brandon in motor class playing with Mark (a physical therapist).

Brandon playing with pudding on a glass wall. This was the "sensory extravaganza" day at class.

This is him with his occupational theapist, Mark.

This is him with Terry. She works with him on everything as it relates to his vision. Who knew there was such a job? She is really good.

Our First Missing Tooth

I have been noticing a larger-than-I-remembered gap between two of Blake's teeth but just chalked it up to how completely unobservant I must be. But Monday morning I decided to have a closer look. I asked him if he maybe had a loose tooth and he said no, but it was actually quite loose. He was sooo excited. He has a few friends who are loosing teeth, but he was the first one at our house with a loose tooth. This morning he came in to me at about 7 and told me it was really loose and it really was. I asked him if he could pull it out and he said no, but then he laid down and must have gotten it because he started freaking out a bit becuase it had gone flying from him hand. But we recovered the tiny little tooth and he is so proud. Here is a picture of the toothless wonder himself!