Wordless Wednesday

That's right

our baby can READ!

*We were expecting Ryan's mom any minute and toward the end of the video she arrives (hence the doorbell). I cut the last one short rather than let her stand outside and freeze!

When it rains

Some of you know why I chose our blog title but most of you probably don't. A couple of months after I had Nathan I left him in Ryan's capable hands and went off to enjoy Blueberry Fest with my mom. While shopping, I happened upon this plate.



I know this is one of many popular, and quite frankly, overused phrases that you see at craft shows but at the time it hit me like a ton of bricks. I really felt it was the perfect metaphor for what was happening in our lives. When Ryan and I first got Nathan's diagnosis we felt as if a dark cloud had settled in over us. And when it rained, it poured. And poured. And poured some more. But somehow we weathered it together. And then our beautiful baby boy was born. And suddenly the clouds parted and we saw a ray of hope. And once we finally got him home, I think we both decided that when the "weather" got bad we would always try to look UP. And I promised myself that no matter how dark the clouds or how much it poured on us, we would dance and rejoice in the midst of it all and remember how blessed we truly are.

I read this quote on a friend's blog. She's taught me a lot about trusting in God's plan for Nathan. I think it sums up perfectly exactly what I felt when I first saw that phrase.

HOPE is more than just a word—
it’s a state of being.
It’s a firm belief that
even if you don’t know how,
even if you don’t know when,
God will come through
and better days are ahead.
Life sends rain...
Hope dances in the puddles
until the sun comes out again.

from "Rain on Me" by Holley Gerth

I recently added another reminder. You can't have too many I guess.

Fun in the tub

Nate is now smiling on command for the camera, which is how I got him to "pose" for this picture. Too cute.



I just thought this one was funny. Ryan was at work tonight and I wanted a pic of him in his hoodie towel, so there I am trying to lean out of the shot while getting the picture in the reflection of the mirror. The things we do for a good picture!

Here we go again

It was nice while it lasted, but as they say, all good things must come to an end. The lengthy and much needed break from seeing specialists the past few months was heaven. Reluctantly, I have made a few lately so I thought I'd fill everyone in.

Ophthalmologist
Nate's eyes are still crossed (as I'm sure you may have noticed in some of his pictures). Hi eye doc, Dr. Z, was leaning toward surgery at our last appointment in October. However, she was confident that he could see just fine. She didn't want to rush into a surgery too soon because she was worried that the muscles may get too loose and over time cause his eyes to drift out. She thought doing the surgery closer to the age of 2 was safe. The appointment is Feb. 15 and I am guessing we may be making plans over my spring break for the surgery. It's outpatient, but Nate still would have to be put under. This surgery would be his fifth.

Neurologist
It's been nearly a year since Nate's last sleep study. He still has apnea and requires oxygen when he sleeps. It's really become second nature to us, and to him I think. However he still has occasional episodes where he "alarms" during the night (his pulse oximeter detects a low oxygen level, usually below 90 for an extended period and will alarm-similar to an alarm clock). We still don't have any definitive answers as to why he has apnea and whether he will grow out of it. We are hoping that the sleep study will show improvement and possibly provide more answers for us. His sleep study is Feb. 18th.

We are also seeing the neurologist for his "hand mirroring". It's hard to explain, but his hands will do the exact same thing at the same time. For example, if he is pointing to things in a book with his right hand, his left hand is off to the side, finger pointed, following the same motions as the right. Our OT is looking for some answers and is hoping neurology can give us some insight. This has limited Nate's fine motor skills and could become more cumbersome for him as he gets older if we can't break it. Our current plan of action is casting. Fortunately we just discovered air casts, which would be like a big arm floatie that we could take on and off and wouldn't be nearly as permanent as a cast.

Pediatrician
Ironically enough, this is the one I dread the most. Ryan and I decided on a delayed vaccination schedule for Nate early on and our ped hasn't been shy about voicing his displeasure. It seems like every time I go in we hear a lecture about the importance of getting vaccinated. Which I know. Nate is currently up to date on all his vaccines except for one- the MMR. Oh, how I dread this one. I don't know why, exactly, but I am terrified of him getting this shot. Ryan and I looked into trying to find it separately so we could space them out instead of doing the booster but had no luck. I haven't actually made this appointment yet. Still working up the courage, I guess.

We are committed to getting Nate the best care possible, even if it means we are seemingly running from appointment to appointment or specialist to specialist. It may not be fun (especially for him) but it's necessary and just a part of life for us now. We are blessed to have good health insurance and live near such great hospitals. It is such a relief to know my baby is in good hands!

So here's hoping for good news in February...

Wordless Wednesday

Self help take 2

Remember when I wrote about Nathan's new OT goals? One of them was feeding himself 50% of the time with assistance to scoop. I took a couple pics of him attempting (and promptly giving up and using his hands). Well, here is an update.



I don't know why this made me cry, but it did. I realize it's progress, a milestone met, one therapy goal made. But it's also one more thing he doesn't need me for anymore. And once upon a time not so long ago, he used to look so small in that chair. As much as I hate it I am all too quickly watching my baby turn into a big boy. Yesterday at Target I bought him two shirts that were on clearance. Do you know what size they were? 2T! 2T! I simply can not wrap my mind around the fact that my little baby is officially out of the baby section. I also can't help but look longingly at all the baby clothes when I now walk past the baby section instead of shopping in it. ;) Sigh.

I'd say he did a pretty good job! (Never mind all the yogurt that ended up on his bib-he really did get quite a bit in his mouth!)

Wordless Wednesday

Pure sweetness

wrapped in a towel.

Christmas

Everyone said it would happen. That Christmas would be so much more exciting with a little one around. And they were right!




We had a fantastic holiday, spent with family and friends (as well as a little too much food, sweets and wii playing). Nathan was more interested in ripping the paper this year but not much else. Except this new toy.



I can't even imagine how much more fun it will be as our family grows. And my sisters start having kids (ahem, yes I am talking to you, Regina!) Well, I can sort of imagine. Paper flying, kids squealing, toys singing, people laughing, and pure happiness all around us. Can it be Christmas everyday?

Thanks, daddy

for playing with me,



making me smile,



and all the wonderful things you do!

That's right

That's my kid sitting in the corner.

It was his therapist's idea, actually. Instead of wanting to sit and play, Nate is always trying to get down to the floor so he can go. This makes it difficult to work on his sitting, which he is still perfecting. So we put him in the corner. It works like a charm actually. Especially if you put a mirror in front of him. Then you can sit back and watch him make funny faces.



Like this.




Or this.

We realized that he doesn't have a balance problem while sitting. Just an endurance issue due to his weak trunk muscles*. But he proved that he could do it, and sat happily and played for at least 20 minutes!

*The funny blue vest with all the velcro are his thera togs. It's something new we are trying to get him to have just a little more ab support than the kinesio tape we had been using. It's a royal pain to get on but it seems to be helping!

Wordless Wednesday

The Yellow Bowl

I'm not sure how or when it started. The family feud, that is, over a bowl. A yellow bowl. I don't know too much about it really, other than it was my Gramma's and it was coveted by her children (my dad, his brothers and their wives). I also know that my mom really wanted it, but my uncle got it. And likes to remind us whenever he can, that he got it. Even going as far as labeling it in photos on facebook. Well. As I was uploading photos, I realized that I have a yellow bowl in my family on the Burnett side. And it is nearly identical. Surely you all can appreciate the irony of having a yellow bowl show up on ravioli day (post to come later). However, nobody other than my parents, aunts and uncles can understand what it meant to me when I realized that I could someday be the proud owner of this yellow bowl. Once I filled Ryan in on the whole story, he decided that we must have it. First thing tomorrow morning I am going to call my wonderful mother-in-law and fill her in on this decision too! Hopefully she can tell me the origins of her yellow bowl and in reading this my parents, aunts and uncles can fill me in on the history of theirs. I, for one, think it makes for a great story. How about you?