Clean Plate

So Jimmy and I decided last night that we would just start sitting Spencer down with a plate of food and see what he would do. Tonight, I made Dude and I plates and we sat down and had dinner together. I fed him to avoid a huge mess. He let me feed him with a baby spork, something he hasn't let me do in forever. He ate everything on his plate. EVERYTHING. He has never cleaned a plate before...ever. He loved baked potato. He ate chicken with BBQ sauce, asparagus tips, and carrots too! Of course his servings were probably 1/3 of a kid his age normally would get, but still, this is huge!

Bittersweet

Spencer at nearly a half of a peanut butter sandwich today.  We then had a clogged tubie after I did his tube feed, which thankfully I got unclogged in a last ditch effort before I changed his tube.  Never a dull moment.

Spencer has been incredibly vocal lately.  He said his I love you to me again last night.  He has also been saying no a lot, which is getting a lot clearer.  He is responding to me more when I talk to him.  There are still times where he just ignores me too:)

He still isn't a huge fan of Quinn.  I occasionally catch him smiling at her, and then stops when he sees me smiling at him.  Quinn started smiling about two weeks ago.  Today Jimmy said she gave him a big old "spencer" smile.  I can't wait until she starts giggling.

She grasped onto a rattle today.  I started crying.  Spencer didn't grasp onto a rattle until at least six months.  When he was her age, his hands were still in splints a huge chunk of the day.  It's bittersweet.  I'm excited by all the cool stuff Quinn is doing, but yet saddened that Spencer had to fight so hard to be able to do the same things.

Quinn

Quinn Avery was born on Friday, March 1st at 7:25pm.  She weighed 6 pounds, 11 ounces and was 19 inches long.  She threw a fit when she was born...I guess she was comfortable.  As far as we know, Quinn is a "normie."  She shows absolutely no signs of any genetic disorder, Ohdo Syndrome included.  The only thing she has is possiblysome tolerance issues with formula (we are poorly attempting breast feeding as well), so there may be some reflux going on, but no where near as bad as Spencer's was.  She also has a scaral dimple, but we don't suspect spine issues.  Normal is scary.  I'm still very much on my toes, looking for things.  My paranoia is also in full force and I'm freaking out about stupid stuff that we've proved isn't in the house, such as lead paint.  It's all probably tied to post par tum stuff, but it isn't all consuming.  At this point I'm just concerned about if breast feeding is going to work.  I'm pumping and we are supplementing with formula.  I'm just about ready to throw in the towel.  I figure we'll find a formula she tolerates well and then I can back off if my milk supply doesn't beef up.  I'm kind of bummed, but if she needs formula, she needs formula.   

Spencer isn't a fan of Quinn yet.  Every time she cries he throws a fit.  They've tagged teamed me in the car several times now.  All I can do is laugh at them because Spencer is so over the top.  He'll get used to her, in time.  He is warming up a little bit...he'll at least come some where near her now.  Quinn lost her umbilical cord yesterday, so today I opened up her play mat.  She fell asleep before she got to play with it, but Spencer had an absolute blast.  I think some of the toys from it went to bed with him.

She had her first bath today.  It's strange not having to carry an oxygen tank or move tubes to carry her or give her a bath.  She did such a good job.  She didn't cry at all.  Afterwards, I wrapped her up in a towel and she fell asleep.

Today

Today in a nutshell:

Met with our new pulmnologist today.  I really like him.  He is one of the sleep center minions, which is exactly what we needed on our team.  Spencer has been having huge issues with sleep lately, and the new doc assured me that we were doing everything by the book.  He is consulting with endocrinology to see if Spence can have melatonin, if not we may be doing Ambien.  I hate the idea of medicating him, but at this point Spencer and I are both miserable.  He also wants Spencer to do a pulse ox test.  If he holds his own, which he has passed this test in the past, no more sleep studies and we can get the god forsaken oxygen equipment out of the house!

We then had a renal ultrasound.  Spencer was a nightmare during the test, although Elmo on TV seemed to help him calm down a tad.  The good news is that the peliminary came back clean.  No damange to the kidneys.  Dr. Alam may have something different to say, but so far I'm pretty pleased with the results.

We then met with Dr. Tamai.  Spencer has been having a few issues with his left leg bowing and the foot trying to turn in a bit.  We have to do exercises with him to keep it from tightening up.  Sometimes after spinal surgery kids start to get tight in the tendon.  If he gets too tight we will have to do another tentonomy and re cast...which would majorly blow.  But so far he is pretty optimistic. 

Our last appointment was with allergy.  We are allowed to try to start doing some eggs in bake goods and see how he processes it.


I forgot to mention, on the 9th Spencer said I love you for the first time:)  Of course it was all in Spencer-ese, but he said 3 distinct words right after I said I love you.

Ghosts

     When Spencer was in the NICU, I coped quite well.  I had a hard time right after he was born, which is expected I suppose.  I didn't want him to suffer...to live a life where he would be mocked and made to feel less valuable in a society where people with disabilities aren't seen as humans by the so-called norm of society.  Back then, I didn't know the gifts that he would bring to the world.  It took me a good two weeks to stop putting on a brave face and to take things head on. 
     Jimmy slowly retreated in himself.  It happens.  He still can't explain how he felt or why, but he was the poster child of someone suffering from severe post traumatic stress disorder.  It's no secret that we separated for a while, mainly because how each of us handled Spencer's birth.  To me, he became someone else entirely.  To him, my need to feel in control consumed our lives and obliterated his freedoms. 
     While the NICU days creep up and haunt me every once in a while, I've handled it all pretty well.  I've never felt consumed by it, until now.  I'm going to have another baby in 9 weeks, and I'm currently consumed in the thoughts that I've now given her birth defects because I used goo off on the kitchen floor liberally, or I was in the house while Jimmy was polyurethaning the floors or using mineral spirits.  I'm so anxious and worried that I've done something to her.  I'm fairly intelligent...I realize that the level of exposure I've had contains very small risks.  When I have done anything in the house, or even when Jimmy has, I've been well ventilated and haven't felt the effects of any fumes.  Even the OBGYN tells me I'm fine.  This all started when I had to wipe my hands off with paint thinner because I couldn't get something oil based off them.  Dumb, I know, but it didn't occur to me as dangerous until I still smelt it on my hands after washing them with soap. 
     It's all I've thought about all day.  It's not even the thought of having another child with Special Needs that bothers me...we can handle that.  It's me doing something that could cause her to have problems.  I can't shake this, and I'm worried the anxiety is going to keep on getting worse and worse. 

Hoho

     Santa came!  Well, that's what Spencer thinks....we think.  I've been talking up Santa and Christmas to him for a while now. We sat on Santa's lap, asked him for a Ipad and a Little People Carnival Train.  I got the customary wake up from the youngest nephew (he was quite excited this morning), and told Spencer it was time to wake up because Santa came.  Spencer was pretty much up right away and ready to go.  He eyed the Christmas tree as we waited for everyone to get up and watched Killian try to break into presents. 

    Jimmy and I vowed that Spencer would open the majority of his presents by himself this year.  I had to help him a bit and redirect him a few times, but he was totally into opening his presents.  He was so excited about the Carnival Train.  All the clothes he got was in bags.  He let me remove the tissue paper (I guess he didn't like how it felt), and looked inside.  Once he confirmed they were clothes, he immediately lost interest and went back to his toys.  He made out fairly well this year and had a great morning.

     On the downside, everyone is starting to feel lousy.  It started with my niece and now my newphew and FIL are coughing.  Hopefully it skips us!  

Eating!!

Spencer is self feeding!  Jimmy said he took a Teddy Graham out of his hand this morning and put it in his mouth.  He just ate a bunch of them on the couch.  He also ate a veggie "Cheeto."  I burst into tears.  I'm so incredibly proud of him.