Saturday, May 28, 2011

Where have I been?

Crap! I am so behind! Yesterday it dawned on me that I have a blog and when was the last time I wrote on it? So not like me to be so darn behind. The funny thing is there is a post in my head that I want to write. I go over it and over it. But never sit down to really get after it. Last Saturday Andrew and I renewed our vows and I want to share why. What happened between last May and this May. I want to share pictures. But I really need to share an update on Lily. The reason this blog exists.
So let's back up a bit. Surgery site is completely healed. She is totally back to normal. We turned it on last Thursday, but the setting is so low we aren't seeing too much change. Now every 2 weeks we will be driving our happy butts to Phoenix to slowly bump it up. All three kids. In the summer. In Arizona. In a van with sucky air conditioning. Anything for seizure control.
She had a sleep study, I think it was two weeks ago? Andrew took her. He said it was like staying to the Ritz! They called with the results and said she is experiencing sleep apnea and now we are referred to a pulminologist. I am not sure what the next step is, a mask? Ugh. We knew she was doing this so it is a nice confirmation, but still sucks. We see a cardio on the 10th. It's like all these new Dr's that we are not used to. I was happy with just the Nuero, Geneticist, and Eye Dr. Now we add two more? And on the heels of being given a new neuro.
I didn't call around for summer schools in time because I wasn't sure I trusted any of them since she stopped being able to attend Foundation for Blind Children, then I got one recommended, called and it was too late. So I am afraid it is going to be a boring summer for Lily. I am working 3 days a week now and she she'll be home with respite when I am working. But they won't be able to do much at all. No walks in 115 degree weather. No outside play. So pretty bummed about that. We'll have to think of some fun things for her to do inside. Maybe whipped cream play. Sensory buckets. I think the other 2 will go to Oli's sitter for 2 days. I'm not sure exactly how it is all going to work out. Child care during the summer will cost almost as much as I get paid.
Wow ok. Done complaining. Holy crap. No wonder I haven't posted much. Negative Sally here.
I love working now, but last year was easier being home all summer with the kids. Well... easy??? Ehh... but I felt better being the one doing things with them. Now it is going to be a whole lot different. Darn it why didn't I become a teacher?
Anyway. Working on my post about our renewal. Pictures included so check back. I promise I won't be away so long!
PS I am in charge of IFCR's newsletter and I have been working on that as well, so I am a busy little bee. Not just sitting in a corner whining all day long which is apparently what it looks like I do.

Monday, May 16, 2011

Surgery Update

Lil Bill is back to normal! She is rolling around and seems to be feeling well. Poops still aren't quite on track, but we're getting there. She has though been waking, oh did I say waking, I mean SCREAMING bloody murder every moring at 5:30am on the dot. We go in her room and nothing seems to be wrong. So we aren't sure what is up with that. Not gonna lie, it kinda sucks. For all parties involved.
But she is back to rolling over and that means it must not be so tender anymore. She went to school today, but after getting Andi's opinion we decided to put a band aid on her neck incision. Although it is healing, it does look "a little bit yuck" as I was told. And I was also informed that Andi doesn't like people staring so we should just put a lightening mcqueen band aid on her neck. What in the world would I ever do with out my Andi Jane? My total surprise, did not want a baby at that time, Andi Jane.
Andrew was out of town this weekend and I had some issues with the word no and Andi. We really got into it Friday night and I didn't contol my temper (I hate when I let it get the best of me) I was so tired and the day was nothing but driving all around the state for Lily's dr apt and for work. It was just a "too much" day and it ended with us fighting and Andi told me she was going to move out and take Lily and Elmer with her. (Elmer the guinea pig) I was still mad at her, but it did soften my heart that Lily was coming with her. And a little sad she didn't want to take Oli. I almost had a great deal.
Anyway, we both apologized to each other and the rest of the weekend was so nice. Just hanging out at home, swimming, church. It ended with our small group meeting at our home and it was such an amazing time. So refreshing. So awesome. I just never understand questioning God when he makes himself so present. So so present.
So that's our update! All is well in the land of Nordy's. We've had some huge struggles, but we are moving forward and better for it.
Oh I also wanted to share Oli's end of the 5th week in ISR ... he is just doing amazing! He will graduate this week! So worth every penny. Watch for yourself. He is 2 years 3 months old!

Saturday, May 14, 2011

Paging Bestie

My friend Kim is amazing. Like hands down the best friend a girl can have. Will do anything she can for me, loyal as all hell and the funniest person I know.
So when she was 15 minutes from picking me up I texted her to see if she would stop at Walgreens and grab an enema for Lily. I had been giving her stool softeners to no end and nothing so we knew we needed to up the ante post surgery. I would like to share how the texting went, this of course is all with her permission. Right Kim?
Not editing, I do spell this bad.

Me: u know i hate to ask u this but is there anyway u can grab some enemas on the way? lily's really having a tough time. i'll $$ u back
Kim: shut it!!! i would love to! plain?
Me: no mint. lol i think plain
Kim: cool :)
Me: u need a bff cape today
Kim: hush! i love to help

She sounds like the bestest friend on the planet right? So willing to help. So loving :)
So when Kim shows up and in her hand is a big bag of plain m&m's we laughed and laughed and laughed. Like she will never live it down. It was awesome! She is pregnant and that baby girl calls all the shots and apparently those shots are filled with sugar.
She even went back to her phone to prove I for some reason wrote eminems .... but I didn't. Not sure why I would, lol. Oh it was so funny. I asked did you really think we were in dire need of m&m's... ahhhh it was so funny. I still laugh thinking about it. And the whole plain, no mint. I thought she was being a smart butt and she thought I was .... well... what did you think Kim? Oh man that was awesome.
The next morning Andrew held his tummy and said boy those m&m's worked.

Love you Kim!

Tuesday, May 10, 2011

Surgery Update

We left the house at 5:45am. Got to the hospital around 6:25am. They got her back and into pre op quickly. And there we sat for 2 hours. Child life came in and brought us an Ipad. Andrew and I enjoyed it quite thoroughly…. I mean Lily did. FYI if anyone out there is thinking what gift could I get for lovely Kim and that darling Lily, well an Ipad would do.



They took her from us a little after 8:30am and we grabbed a bite to eat. When we made it back up to the waiting room they said they made the incision a little after 9:15am.
We sat there for about 2 hours and then we got to go into recovery. She looked so peaceful sleeping there. Every time she moved though she would cry. The nurse was telling us that they were getting her a room and we were staying. I said “no this is outpatient” and she said “no orders say she is staying”. I said we need to talk to the surgeon. We had yet to speak to anyone and I started thinking something went wrong during surgery since it was originally going to be outpatient. Surgeon eventually came in and said it was up to us to stay or not. Said everything went perfectly, they were able to keep it on the left side and she did well. We said if she is fine we will take her home and that is what we did. She slept pretty much all day long yesterday and she cried whenever we tried to move her even an inch. I let her lay all day, but today she is going to have to move some. Poor girl. She is smart though; she knows what hurts and refuses to move it.
My mom kept Oliver all day and Andi was at school so it was nice to have a restful day after such an eventful morning. When Andi came home she was so good and calm it was so nice. Today might not be as lovely. Hopefully Oli will be on his best behavior.
The tooth fairy didn’t find Andi at Grandma’s house AND didn’t come last night either. We are really hoping she comes today while Andi is at school because she is feeling quite left out. Oh that darn fairy.
We may send Lily to school on Thursday or Friday. We will see how she is doing. I was told they didn’t go under the muscle so it shouldn’t be too painful. We have an appointment to turn it on next Thursday the 19th. I am really praying this was all worth it.
We still don’t know who the neuro will be. I saw our neuro on our way to the cafeteria and told him he better hook us up with someone amazing.
Thanks for all the prayers, well wishes and concern. I am always so overwhelmed by the support we receive.

Sunday, May 8, 2011

Tomorrow is surgery

Today was a wonderful day filled with cards, gift cards for pampering, great family time at my parents home... picking up Oli's poop off Andi's carpet.... you know typical Mother's Day.
At the end of the night we had to say good-bye to Andi and Oliver who were sleeping at my parents, it was the best alternative since we have to be at the hospital by 6:30am tomorrow. My mom will be taking Oli to swim and Andi to school. But when Andi hugged Lily she started getting really emotional. She is so beyond her years. She has such a tender heart. I'm sure she was fine when we left but she always has a way of tugging my heart strings. At least she lost yet another tooth so anxiously waiting the tooth fairy will be a great deterrent. I just hope my mom... errrr I mean the tooth fairy remembers tonight ;)
Andrew and I were joking tonight after Lily got a massage, teeth brushed, toes and fingers clipped... "man can you imagine if Lily was our only kid? She'd be sparkling all the time" lol... I'm sure all parents think like this, right? I hope all those only kids out there are sparkling :)
We will update tomorrow when we get home.
Prayers please.

Wednesday, May 4, 2011

Ugh

We got bumped! Surgery will now be Monday. I gotta be honest, I was bugged by this. I got this phone call AFTER I got the phone call saying our Neuro is moving to Oklahoma on May 25th(!?) and I got that call AFTER finding out we never should have done business with a friend. (I won't go into detail, but I know many have been there done that). The truth is a child was admitted to the ER and needs surgery today, hence the bump. Everything in me knows to have compassion for the child and family. I never want to think my child should be before any other. I know we went through a lot to make sure all the kids are figured out, but I also know my parents live down the road and are always willing to help (until those darn snowbirds leave all summer :)) and we'll have it all figured out next week. The appointment to turn it on stayed the same so the end result is not delayed. It was just a snowball of crap day. But we're fine. I'm fine. Now she is first of the day and won't be starving waiting all day for surgery. And now the little 2 get to sleep over at grandma and grandpa's Sunday night and I know how they are excited about that.
Knowing that God is the ultimate planner, I know to trust the schedule he designed. But I am allowed to gripe a bit right?
The good news is I am still taking the day off today!

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