Thursday, July 15, 2010

Long-winded princess update

I have read on other blogs that people some times get shot down for being too honest. I guess others find it depressing. Well, I take pride in my honesty on my blog. I'm not about to sugar coat the life I live. Who would I be kidding? There are beautiful ups, and down right nasty downs. Every day is a challenge, and we never have a clue what the day will bring. Will it be a day full of seizures, or a calm relaxing day? What good would it be to a family that might find my blog for the first time if it was all rosy and happy? When Caitlyn was diagnosed, I felt better knowing I wasn't the only one who thought it SUCKED!! Well, just a has been a long summer already, so this update might not be all happy.

Let's start with a picture...

I took this the other day after Caitlyn got home from school. It was a rare day that Gunner was asleep, and we got a private 1:1 momma daughter moment. I do love her dearly. As my mom tells me...She will always be my baby. Even as we look forward to celebrating her 7th birthday in a couple of weeks, she is my baby!

Updates, in no particular order:

  • Caitlyn is doing AWESOME in school!!! She really took off about mid year. She is recognizing all the letters in her name, numbers 1-5, and identifying many objects. We know she knows WAY more than this, but these just happen to be some of her "goals." Parents of a non-verbal child get what I mean. She gets so bored with the drilling, that she often refuses to show us what she knows!

  • She has mastered a yes/no system! This is so huge for us! She taught me a lesson the other morning. When Caitlyn says "no" I don't want to get dressed for school AND says "no" I'm not done on the toilet, I should listen. Time to slow down, and let her have control of the morning, I guess. Giving her a little control sure beats cleaning the carpet! We can say "do you want strawberry ice cream? yes or no?" and she will indicate "yes." She doesn't say yes for every flavor, strawberry seems to be a favorite

  • We have wonderful seizure control! We do still see the occasional seizure from time to time, but for the most part her meds are keeping her stable. We have been lucky in that her lack of appetite is the only side effect of meds that we have ever seen. When she first started seizure meds 4 years ago, her neuro said it may slow her down a little...I'm still waiting!

  • Caitlyn is headed to a new school next year. Rather than have two life skills classrooms at one school, the district has decided to have one at two different schools. We were originally supposed to stay where we are, but made a very difficult decision. We fought so hard to have our little girl in a gen ed environment and interacting with her peers, that it was really hard to move her away from that. The reason was pure safety. In the life skills classroom at her current school, she would have been the only child unable to defend his/her self. There are a few aggressive children in there, and I felt like all independence would be gone. She does have a 1:1, but we strive to have her be as independent as possible. I think we made the right choice, but only time will tell. She was going to have a new teacher anyways.

  • She seems completely in love with her baby brother! most of the time...She does smack him on the head, but also gives him kisses. She has began to notice that he watches her, and loves acting silly for him.

Hate is a strong word...I don't know when it is ever really appropriate. But I have to tell you, I do hate Rett Syndrome. I hate what it has taken from my girl. I hate that she doesn't have a voice. I hate that she can't control the strength of her touches. I don't like worrying about the next day. I go through these phases where I get really down and just cry. I want so badly for her to be better. I want to be able to hear her say "I love you mommy" or even say "can we take him back now?" Some days are just hard....

I have to say, Caitlyn has had a very typical response to Gunner being here. She loves him, gets a little jealous, and has now started acting out for attention. This is such a struggle to deal with. Do we even know if she gets it when we put her in her room for a "time out?" She laughs and giggles, then returns to her new found attention getter..hitting and pinching. A never ending battle.

See? ups and was a big down, please let tomorrow be a happy up!

Monday, July 12, 2010

A Car seat growth comparison

Here is a look at how much my baby has grown...

Here he is on the way home from the hospital
This one is just shy of 1 month oldAnd here he is just after turning 2 months!
Stay tuned, he'll be 3 months old in 3 days!!

A long time coming...our addition

Wow, where has time gone? We were without internet for a few months, but are back now!! So much has happened since last I posted!! First, the biggest even occurred on April 15th. No, filing income taxes was not the highlight of the last 8 months! At 7:30 pm on April 15, 2010 we became a family of 4. We welcomed to our home Gunner Thor Christofferson.

His arrival was mostly uneventful. I started having contractions the Saturday before he was born. They would go every 5 minutes for about 40 minutes, then stop for a couple of hours. On Monday, my doctor checked me and nothing had changed! Wednesday April 14th, I went in for my weekly NST, to monitor his heart rate. He was having some dips, so they kept me for induction. It was a slow process. I was admitted, and pitocin began at about 10pm. They had to shut it off early in the morning, because the baby was struggling a little. After shift change, my new nurse at 7am figured out that Gunner's heart rate dips were related to my position during contractions. Once we figured this out, we were able to begin the pitocin again. I went from 0 cm at 7:30 am, to 3cm at 9am. Then, nothing changed. At 3:00, they came in and broke my water, and I was about 4cm by then. By 3:30 I was ready for an epidural. It was put in, though never fully worked. I went from 4 cm at 3:30, to 10 cm at 7pm! I felt way more with this delivery than with Caitlyn! It was amazing...Gunner was put on my chest immediately. I don't think I took a breath until I heard him breath. He is perfect! He was 8lbs 2 oz, 20 inches.

When we came home, Caitlyn seemed excited. It was all new, people were coming over to see the baby. Everything was going well. On the evening of April 25, at 10 days old, Gunner became unresponsive and lethargic. Prior to this, a simple diaper change would wake him up. Given our experiences with Caitlyn, we didn't mess around. We were scared, to say the least. I sat in the bedroom with him, crying, while Eric called 911. They decided it best to transport him to the hospital. He slowly began to improve. They did blood and urine cultures. Nothing showed up. The on-call ped felt that the event was neurological in origin, and ordered a CT scan. Thank God, that was clean! They decided to admit him for observation. As we were waiting for a bed to be available, I layed on the ER bed holding my sleeping baby. The oxygen monitors kept alarming as his levels would dip. They ordered a chest x-ray. It too, was clean. I guess the way I held him constricted his air way. We may never know exactly what happened on that day. We suspect it may have been a seizure, or a simple blood sugar drop that he recovered from. What we do know is that he is healthy and well, and nothing has happened since!