A little piece of heaven

My great friend Amber, Brandon’s mom, is my inspiration for today’s post. She has walked this journey with me from the very beginning, and has been a wonderful friend and support for me all these years. I love her attitude and her perspective.

Talking about perspective, below are a few pictures of Nathan’s brain:

From ax t2 gre s

From o-ax t1, flair

From o-ax flair

From 3 pl t2 fgre s

Here are a couple of examples of a healthy brain:

When I look at these pictures it reminds me of just HOW amazing Nathan is. You don’t need to be a neuroscientist to see the abnormalities in his brain. This is a child with not only severe holoprosencephaly, he has suffered damage from hydrocephalus and bacterial meningitis. I can easily name 50 things wrong with his brain. And if I wanted to start labeling all of his diagnoses,well, it would be a long post indeed.

I am just awestruck by just how extraordinary Nathan is! He is so smart, so funny, so sweet and sensitive. He’s so curious and loves to learn. He understands SO MUCH. He eats like a champ (have I mentioned that he’s now 28.5 lbs??!!). He’s starting to say words consistently: more, elmo, agua (water), nalga, orange, mama…today he even said BELLE! He laughs at everything. He only takes 1 prescription medication. Hasn’t been hospitalized in 2.5 years, and has only had shunt surgery. He is passionate about books and loves watching people. He is the biggest love/cuddle bug in the planet!

I know he hasn’t made much progress in motor skills…but when I look at those pictures of his brain and look at the child in front of me, I feel so much gratitude! He has overcome SO MUCH to be the extraordinary little boy he is today. I used to think that I would only feel truly happy when I’d gotten Nathan to some degree of physical functionality. I was so wrong! This child gives me so much happiness, just from being!

Talking about fun, today we went shopping for newborn clothes for Belle! We went with Nathan’s grandma, great-grandma, and greatauntma and they helped us pick out a bunch of outfits. Nathan had such a great time – he looked like a little prince surrounded by his adoring entourage. He is feeling much better – the doctor saw him and said his ear infection is clearing nicely and his chest is fully healed – he’s off all breathing meds. We’re just finishing off the antibiotics. We plan on heading back to Irvine Monday morning to continue our HBOT/suit therapy adventure!

My brain’s a bit rambunctious today. I have a whole bunch of stuff I want to talk about and I just don’t know what to pick. So I’m going to say a bit of everything.

* I got caught playing the “doctor switcharoo” game. I’ve been trying to find a good OB for Belle and have been to 3 or 4 and I got caught, now the perinatologist doesn’t want to see me. Ooops.

* Talking about OB’s, I’ve decided to have an amnio. Now I just have to find a doctor to do it. If there’s one thing I have learned with Nathan, it’s that I have to be prepared and I cannot trust doctors! So I want to know if she’s going to come in with any issues so I can be prepared. If she’s positive for down syndrome, then it’ll change what hospital and doctor delivers her. So it won’t really change how I feel, at least I can start sharpening my fangs and getting ready if I need to be 🙂

* My office is now in my bedroom, and there’s now an empty room in my house for Belle’s nursery! The redecoration has begun!

(Yes our dogs sleep on a queen size mattress at the foot of our bed and that’s Lola hidden under the covers 🙂

(I emptied the office but didn’t have a chance to start cleaning it out and taking stuff down, so this if Phase 1 of Belle’s nursery!)

* And the last thing about Belle … I’m now 28 weeks – the beginning of the 3rd trimester! How exciting! And how very very uncomfortable.

* Nathan’s been super duper whiney so I’m thinking he may not be over his ear infection just yet. We’re going back to the doctor tomorrow. I’m still planning on getting down to Irvine for hbot/suit therapy as soon as possible!

* If you feel like you need a smile, head over to Trevor’s site and check out this super cute video:

Pleaseeeeeeeeeeeeeeee

* I started a woman’s class called A Woman’s Truth. I went to a few classes last year but my attendance was awful. This year may not be much better but I have to try! The first class was on Saturday and I loved it. Miranda, the facilitator, had us determining what obstacles we have to taking care of ourselves. We had to dig really deep into ourselves to find out why it is we don’t give ourselves the time/energy we deserve. She mentioned over and over again that as mothers we tend to be “self sacrificing” and to think of others first, and we leave our needs last. If our well is not full then we really don’t have much to give. So she encouraged us first to identify our obstacles so we can start working on overcoming our obstacles throughout the year. Mine is: TOO MUCH TO DO! I always think DOING is more important than BEING. So if I have a 30 min pocket I find a hundred things to do with it, instead of doing the things I need to do for myself, like exercise, meditation, rest, etc. So my intention for this year is to change from a human doing and become a human BEING.

* Talking about goals…I’ve been thinking a lot about what I’m doing with this blog. Why I do it. What it means. Katy talked about this today as well and it motivated me to talk about it too. I feel like I need a “mission statement” for this blog, a clear picture of why I am here. I am totally open to hearing your thoughts or suggestions on what direction you think this blog should take. More life/chit chat? More sharing of information? Less/more posting?

* Here’s Nathan getting on the bus today. He needed another clothing intervention this morning 🙂

* Oh, and I accidentally cut my hair short. REAL short. Sorry, no pix yet, I have to get used to it first! Owen disowned me. But he’ll live. Me….I can’t say I love it….but I DO love the low maintenance and practicality!!!!

Enough ramblings for today, I’m going to go take care of myself and do my FitMama workout!

This morning I managed to drag my tired butt downstairs before Owen put Nathan on the bus. I found him wearing pants that were way too short (just under his knees!) and socks that were MINE. Yes, you heard it right, Owen somehow though that those socks were Nathan’s and okay for him to wear – even though there were about 20 sizes too big. I almost passed out laughing. The socks hung over his shoes and the pants dangled just below the knee. It was so comical. Thank God it was the one day I managed to get up before he left for school.

Talking about the mornings…Owen has been such a super star lately. He has “taken over” the mornings with Nathan. He sets his alarm, wakes him up, bathes him, occasionally brushes his teeth, feeds him, packs up his lunch bag (which contains random things like eggs and yogurt(!!) (yes Owen you got caught the teacher told me) as a snack), and puts him on the bus. My tired sleepless pregnant butt and I get to stay in bed until about 9 am when I really can’t justify staying in bed another minute. THANK YOU OWEN! I guess dirty teeth, humongous socks, short pants, and dairy snacks are a small price to pay for the extra sleep 🙂

And talking about school…I got this report from Nathan’s teacher today:

Nathan had a great day. We started with APE on a huge airflow mattress. This was to work on balance and he appeared to be having fun. He then ate his snack and today, he chose his yogurt more than his drink. He ate the yogurt completely. We moved on to circle time.

I had a variety of pink objects (a pink doll, pink pig, pink slinky, pink beads, pink powder puff. His favorite was the pink slinky which he asked for by saying “more” several times. It was on to the stander first for integration into Tanya’s class and then for art time. He and I made a Valentine by putting tissue paper on a sticky surface.

He worked very hard and diligently at pushing and grasping in order to move the papers into position. You will see when we send it home on Thursday.

This kid really really really loves school. He must get that from me 🙂