Park Time!

We have the most wonderful park a short drive from the house. And stupid me just found it. It’s right by the lake and has a wonderful walking trail, a snack bar, huge trees, a splash pad and a great park!!!

We went and checked it out the other day and Katheryn had to be (literally) dragged away. Katheryn was running all over enjoying the slides and the ramps and the trains, the pirate ship and the bouncy things and wheels that turn, knobs that twirl and the wood chips and.... Every time she turned around it was like she found another wonderful thing to play with!

I was trying to juggle the 2 kids, watching them to make sure they were fine. It was either sit with Nick and watch Katheryn from the distance, or chase Katheryn around the park and watch Nickolas from a distance. Or carry my 25 lb 'little' baby around, fighting to keep his hat on AND chase Katheryn around the park. Pretty much I did all 3. This must be training for when both kids can be running in opposite directions and I have to watch both of them.

Nickolas thought the park was great because there was nice shady trees he could sit under. He LOVES watching the leaves blowing on the trees. Since we live in a new development we don't have grown trees for him to look at - so parks, cottages, grandparents are when he gets this treat.

But he lies under the trees, laughing and talking to himself and just having fun!

When Katheryn wanted a break from running around she wanted to 'tee-tell Nick'. Which he loved of course!

Normalcy

Things are normal, we have a rhythm. We've hit our stride. Spina bifida is not the first thing we think of everyday, or the last thing every night.
I'm not quite sure when that happened. But it happened.

We have a routine now, that part is new.
Nickolas is actually on a nap-time routine! Yay!!! And he is sleeping more than 10 minutes at a time - sometimes I can even get an hour... or (yay) 2 hours! I've probably jinxed myself now I know.
Maybe the routine is what has helped me feel more normal, that I'm able to anticipate our day. Get out in the world, enjoy the last days of summer.
Not that we stayed at home before, I was just finding I'd look around and all of a sudden it was 4pm and time to get supper ready.

Normalcy has developed. What do we do with Nickolas that we didn't do with Katheryn? Not so much. We play the same games, sing the same songs, go for the same walks, play with the same toys.
Nickolas is less mobile. He's got rolling down pat, but not enough to go to where he wants to go.

Our days are cuddling, playing, diapers, baths, eating and cooking. With some outdoor walks or parks thrown in for good measure.
Yes the diaper changing involve cathing and the eating involves medicines and outdoor time involves careful monitoring of temperatures and finding cool shady areas. Oh yeah and playtime involves physio... but shh don't tell Nickolas he's working!

Hearing

I have been worried about Nickolas' hearing for a while. I am concerned because in the morning I stand at the doorway to his room, call his name, and he doesn't turn - sometimes. Was he ignoring me, or could he not hear me? That is the question.

Nickolas can hear. That is not the question. He can hear you talking, can hear the dog bark, the doorbell ring, his sister crying. He follows noices and looks up and flashes a gorgeous smile when you call his name. He babbles. He passed his infant hearing screen no problem (at 1 month old).
So what is the problem right? Am I just being a psycho mom? I'm not quite sure. There is just something. I've noticed that quieter noises he doesn't necessarily notice. Whispsers he is less likely to turn and look at you. I need to do some more exploring.

I've talked to multiple people about it and everyone says the same. If I'm still concerned we can screen him again at 1 year!
But I don't want to wait a year. When we were screened at 1 month we were told that because of the spina bifida and hydrocephalus he fell into a high risk group, and would be screened again in 3 months. When we went for our assessment at Grandview, at 4 months, I asked about screening and was told that he wasn't in a high risk group. He didn't need another screen. But if I was concerned I could contact the audiologist (hearing specialist).

About a month later (5 months) I decided that yes I was a bit concerned and so I called. They told me that they don't do more screening unless he failed his first test, but if I was still concerned at 1 year, to call again. I talked to his pediatrician at 7 months and said that sometimes he doesn't turn when I call him, but I downplayed it (I think) and said I wasn't sure if he was just ignoring me. I also told him the audiologist said that I had to wait for a year. He of course checked his ears and they looked clear.

I talked to every person we saw about how he sometimes didn't turn when we called him. But yes he could hear and he could respond to noises, and was babbling. These are all check marks in the infant hearing chart.

FINALLY a couple of weeks ago someone listened. Dr Church at our spina bifida clinic. I can't remember what brought it up, there are a bunch of things that I worry about, but turns into nothing. But I did mention about his hearing, and that I've contacted people and told people, but was always told to wait until he was one year.

Well, she said that 1 year was not a magical number, and if I was concerned then I should call again for an appointment and if they gave me a hard time, she would fill out a referral.
THANK YOU!!!

So we do have an appointment for follow-up on his hearing. Hopefully get some answers.

9 months

Nickolas is 9 months old today.
And another lucky Friday the 13th! I am amazed at how far we have come. How much Nickolas has grown, and how much I have grown. I've heard it before that you learn so much when you have a special needs child. That you look at life a whole new way, take time to appreciate the little things, you appreciate everything instead of taking things for granted.

Nickolas is doing so much. You can hear the wheels in his heading turning, trying to figure out how to do something. Usually it involves trying to get Katheryn's toys, clothes, hair or just Katheryn. He is rolling to get himself places, or just squirming around. I got foam squares that I put him on, it's nice and soft and means he's not picking up dog hair and putting it in his mouth. We have a big hairy dog (Bernese Mountain dog) and there is hair everywhere!! Seconds after I vacuum it is back.




I took his 9 month picture, I take it and you can see how much he has matured over the month. So much more than when he is in front of you every day.

Here is our 7, 8, and 9 month pictures

Nickolas in the SB&H Bulletin

Nickolas - Current