Jan. 27

Tomorrow, Ryan will be 9 months old.  He was born at 790 g and last week he weighed in at 7.44 kg (16.5 lbs). Simple math tells me that in 3 months from today, I will be composing his 1 year post.  I have thought about his 1 year birthday a lot lately.  a) because he won't "really" be a year old, but b) he will "really" be a year old.  Right now, his corrected age is 5.5 months.  Developmentally, he is behind his 5.5 month 'peers'.  His 8 week long 'cold' did nothing to help him physically - it only put him further behind.  He has made tremendous strides since he got better.  He can even muster up enough air to have a real baby belly laugh when we tickle him.  A sound we thought maybe we'd never hear from him.  Today, his oxygen requirement is half of what it was when we brought him home from Sinai.  That said, we are working VERY hard to keep him healthy to avoid further setbacks. His feeding is still a major issue, and we are now officially waiting for a surgery date to get him a g-tube (a more 'permanent' feeding tube).  He won't have the one that goes in his nose anymore, it will be right in his tummy.  The unfortunate part is that for the surgery he will be intubated again.  We had our pre-anesthesia consult the other day, and I left feeling ok.  But just ok.  I know that for him, recovery may be challenging. Controlled ventilation is much better than emergency ventilation, so they will do it pre-surgery.  The physical recovery may be difficult, but he's shown his strength on many occasions, so hopefully this will be no different.  Apparently the wait time for surgery is up to 3 months, so we've still got a while to go...  He may be getting his new tube for his birthday.  This year, we will let him have 2 birthdays.  One in April, and his 'corrected' birthday in August.  Maybe by then we'll be more able to celebrate with more than just our immediate family.  

We have started Audio Verbal therapy to help teach him how to attend to sounds.  I was actually pleasantly surprised by our therapist, and I think she'll be a great resource for us.  I was also happy that she said, "I don't think Ryan is going to be very difficult to work with."  With his track record, this was a big relief. 

Since I've been feeling sentimental, I read over some of my posts from the early days and realized that because we were in such a fog, I actually made some mistakes about what kind of ventilator he was on and a few things about treatments and timelines.  One day I'll correct those errors.  Also due to my sentimentality I started looking at pictures of Sadie when she was 5 months old.  That might have been a bit of a mistake.  We took her to Florida, in many pictures we were outside, at a cottage, at friends' houses, playing with Baxter, laughing, etc.  Our life now is our 'new normal', but sometimes we miss the 'old normal' and although we can't do anything to change how things are, we can't help but look ahead to times when we can take Ryan to the beach, or playdates, or even to the grandparent's houses. We are still living week to week with occasional glimpses at month to month.  For the first time the other day, I looked at the potty and pictured Ryan using it.  He has so far to go still - he's mastered the head lift when he's on his tummy, but we've still got rolling and sitting to check off before I can start thinking about all those other things. 

The last thing that keeps me awake (aside from the constant Sharon, Lois, and Bram songs that run through my head on repeat) is the knowledge that Sadie could potentially start school in September.  After the year we've had, I am VERY hesitant to enroll her in JK so the 'shopping' for nursery schools has begun.  I called a lovely montessori school, but as soon as I heard there were 24 kids in the class, all I could think about was GERMS!! We can't shelter her forever, and hopefully by September Ryan will be even stronger, but the guidelines all say to keep preemies protected for the first 2 years of life.  Looking for a happy medium now - a smaller group, part time, and cheaper than montessori.  She needs to start having more kid-experiences. 

Wish I had a picture to post, but I think the camera has sat on the console table since Christmas. So many appointments lately, January seems to have disappeared.  Hopefully the rest of the winter months will go by as fast so that we can get outside!

P.S.  I wrote a letter to BabyJogger (the stroller company) telling them a little about Ryan, and asking them if they could help us get our hands on a double stroller (because the retail price is $850)... i.e. an older model  or demo stroller.  I knew it was far-fetched, but I tried anyways.  Not even an acknowledgement of the note.  Not a 'no, we're sorry we can't help you.'  Nothing. Shame on you, BabyJogger.  Although I still love and am obsessed with getting my hands on the stroller.  It will hold two 50 lb kids! Sadie isn't one of those kids who will 'refuse' a stroller.  With the right 'motivation', she'll sit for a good walk, as long as there's a park date at the end.  I have the search saved on kijiji and I think I check it more than I check pinterest.  Which is a lot.