Monday, April 27, 2009

From NICU to Now: Wow.

I've noticed that this is increasingly becoming a blog about raising my special needs baby so today I've decided to reach out my arms as far as I can across the internet and look for other special needs parents. If you know of any please send them my way, and if you'd like to be on the new blog roll for special needs parents please let me know in a comment. Of course I encourage everyone who reads my blog to continue reading and commenting. You guys keep me going with all your support and encouragement. And for any lurkers out there, don't be afraid to leave a comment! I love them, I thrive on them, and in all liklihood I'll drop by your blog and leave you a comment in return.

SO the news for the week. I'm coming down with a cold, and I hate it. The sore throat thing is the worst. I've been taking my vitamins though and trying to eat really healthy foods to combat it. On the weekend my girlfriend and I took Skyler for a nice long walk in the stroller. It was very nice to get out and enjoy the (finally!) nice weather. We just chatted and had a nice relaxing walk. Ah relaxation a word I'd all but forgotten as of late. Which leads me to my next paragraph.

Who knew one very small 12 pound baby could have so many appointments in a year. We're booked up until September! I kid you not, we have an appointment with his opthamologist in September. We have appointments every day of the week. Next month he turns 6 months old, so that is a very busy month for us. Everyone wants to see him. His endocrinologist, his NP, the cardiologist, child development (this is a new one we haven't seen yet) the OT of course, and his CNIB OT, and his home visitor as well. I'm sure there are some I am forgetting though.

However, we're managing. Though we seem to have developed a new problem. My little boy's appetite! He seems to want to eat constantly and I'm starting to wonder if I'm making enough milk because it seems like he just wants more, more, more. I know your breasts will produce as much as your baby needs, so I have nothing to worry about, but I'm always finding something to worry about. I'm doing my best to stay hydrated hoping that that will help. We did try mixing up the smallest amount of very watery (well technically I made it with expressed breastmilk) pablum, but he isn't quite ready for it yet. He's still pushing the food out with his tongue.

Just in case you are wondering, he's definietly not starving. He is a very healthy weight, and he is eating lots, it just seems like he wants more. And to help my insecurities enter C's lovely family. I know he is probably upset that I am complaining but I have to vent. We went to his parents yesterday so he can fix their computer. Well his aunt was there (and I hate this woman with a passion, she has no idea when to shut her mouth, or that certain things are just not funny.) So I finish feeding Skyler, and pass him over to his grandma, and C's aunt walks into the room and comments on why Skyler is crying (he wasn't actually crying he was talking.) "That's the cry of a baby whose parents don't feed him." Obviously she didn't see me feeding him two seconds prior, and obviously she's a b*tch. And that's not the end of my rant. C's dad has a trick lighter one where you press the button and get shocked. They did it to me last time I visited and it HURTS. So this time he tries to get our friend to use it. I warned her not to touch it, and of course he got all pissed off. So then he says "let's use it on the baby." I kid you not. Let me tell you we left in a hurry, and not in a good mood either.

Skyler is doing well, he had his appointment with his NP last week, she said he's gaining really well, (so obviously I do feed him) he hasn't grown much at all though lengthwise. She said not to worry about it because last time he didn't grow lengthwise he made up for a couple weeks later. I think he is just doomed to grow slowly until he gets on the growth hormones anyway.. Unfortunately that's the way it is when your baby doesn't have all of his pituitary gland. He is as happy as he ever was. I cannot get over his huge smiles! I tell you he is just the ray of sunshine in my life.

I'm learning more and more about helping my blind baby's development, and how to be a good parent to him. I've learned that it's important to describe his world to him and point out things that we think nothing about because we have sight, like to tell him the expressions on people's faces, and what kind of clothes people are wearing and how others interact. He will have a hard time with social cues because he can't see people's faces. I need to help fill in the gaps as best as I can. I also have to stand up for him and explain to others about things he is comfortable and uncomfortable with.

I also learned from his CNIB OT that so many people even professionals like doctors and therapists and specialists have very little experience dealing with blind kids and don't know their development very well. She was saying how some things that blind kids do seem like autistic behaviours and she's had cases where doctors think the child is displaying signs of autism, but in reality it's just the child's way of figuring things out. An example would be one little girl likes to snap or clap her fingers when she enters a room. Her doctor thought she was exhibiting signs of autism, but what she's really doing is gauging how big the room is. She can tell by the sound of the echo. Because we don't always think to describe to a blind person how big the room is or what it looks like. We take our sight for granted. This is something I'm coming to realize.

I think it will do me well to take a day sometime soon to wander around this world with my eyes closed and see how well I fare, and see what helps and hinders me and this way I can be more prepared to help my son navigate and to understand somewhat what he is going through. I mean I plan on spending a day without my glasses as well and for me that is scary enough. I can only see about 12 inches in front of my face without them. So it should be highly beneficial for me to walk around "blind" for a while. I want to have the best understanding I can of his world.

The other day I got a message on facebook from a girl whose baby was in the NICU with Skyler. I think I wrote a post about her around christmas time. She was from Flin Flon (yes it's a real place) which is up north in our province, she went into labour at 32 weeks and because they didn't have a NICU or the resources needed they had to air lift her and her baby down here to the hospital Skyler was at. So here was this 20 year old stuck in an unfamiliar place with no family, and her baby in the hospital at christmas. We had her over for dinner and spent some time with her talking to her and keeping her company.

When she added me I was excited to catch up, and I looked at her albums. She had pictures of her son in the NICU. I was reminded of our time there. So I went and looked back at all the pictures and videos of Skyler right from his birth. I can't fathom that that itsy bitsy little thing is now my big baby boy.


Verna said...

Check out Shi's sister's blog
Inside Amy's world

Eli isn't a baby/baby anymore, but I am sure you could relate with some of the challenges of life.

If she ask who told you about her, tell her It was her sister Shi's blogger friend Verna at Coleman2 blog.

Have a better day today!

Stacie said...

Okay finally, a chance to comment. Have I ever mentioned that I get side tracked really easily?!

Just reading from the time I started following your blog [when Sky was newly in the NICU] to now, you have made so much progress. It's been amazing to watch everything unfold, even though things have not got the way you first imagined they would.

You are an amazing person!

I totally lost track of time and did not realize that Sky is approaching SIX MONTHS!!!!

Ahhh, he is so precious. He makes the cutest faces. I'm sure you would agree!

Autumn said...

This is the blogger formerly known as Awake (While the Baby Sleeps...) - ha! I don't blog there anymore, just on my family site.

Anyway, just wanted to stop by and say hello and your son is gorgeous! Glad to see your little family is keeping its head above water.

Amy said...

Oh, I just love the pictures. He's grown so much! Still as adorable as ever, though.

It sounds like you're taking everything in stride and figuring things out. Keep it up - you're doing a great job.

Karen said...

He's just a beautiful boy. I think in all the concern over his health problems, we forget what a blessing it is to simply have him. You're very lucky.

But OMG! I would have freaked if my in-laws thought it was funny to hurt a baby as a prank!

Rebekah said...

I know you followed me over to my special needs blog already... If you look on the right hand side, I have links to a lot of other special needs kids that you might want to check out.

I think about you and your sweet little guy a lot. You're learning so much about his care and progressing so quickly! He will benefit so much from it. Right on, Mama! :)