Putting my fear aside?

Today I got a phone call from the project manager for the Tri-State Childrens Health Improvement Consortium. They are looking for a parent of a child with medical needs to do a presentation and to sit in their board meetings and give a parents perspective of things.

Out of 18 states there were 10 grants awarded for a 5 year project. West Virgina recruited 10 pediatric practices to provide care coordination. There will be a care coordinator at each practice.  So it's a pretty big project and a big deal!

What they want from me is just hear our story. They want me to go to the meeting in September and do nothing but tell Lynlee's whole story. And in that show how care coordination would have helped or helped up.  Luckily Pittsburgh Children's has a care coordinator. I can honestly can say we would have been lost without her. She had set up all of Lynlee's supplies, meds, etc for us to bring her home that first time. She made our lives easier!

So what's the problem I'm sure your thinking.. Why wouldn't I jump at this? Not only does Lynlees story get out but it brings more awareness to her Urea Cycle Disorder and to Organ Donation. I would maybe be making a difference. I could possibly be helping another family get the help they wouldn't normally get. I could help another special needs mom life be a little easier maybe...And not to mention the difference you can maybe make sitting in on the board meetings.

 Well I'm  ashamed to say I'm scared to death of public speaking. The thought of me standing up and giving a presentation to 30 plus people makes me want to vomit my computer right now let alone actually do it. If I could write my story and send it to them I would but that's not what they want. Ryan reassures me I can do this! That I need to do this. That no one else can tell our story like I can. That we've been through so much I should do this to help others. He says I can put my fear aside since it's something I'm so passionate about and its just part of a bigger plan that we are supposed to be apart of..

If only I had confidence in me. I know I need to make a decision soon. So that I give them plenty of time to find someone else if I say no. And if I say yes we only have a few weeks to prepare for a power point presentation. 

weekend recap

First things first. Lynlee's up all night on Thursday was due to nothing else other than salt in her bed. I guess after we got home from our annual trip to DQ to support the Children's Miracle Network she put her fries in her bed to watch her movie. Why I didn't realize this was the issue at midnight, 1am or even 2am still amazes me. But her bed was washed Friday and we've had sleep every night since. Thank Goodness.  I'm laughing because it looks like we only go to DQ annually. Oh how I wish I had that much will power :)

The weekend was good. Busy, but good. Ryan worked two 14hour shifts in a row last week so Lynlee and I were too happy girls to have him home all weekend.

Me and Lynlee being two happy girls :)

Saturday morning Ryan's parents took Lynlee to watch the train take off so Ryan and I had a lunch date.I seriously don't remember the last time Ryan and I shared a meal alone together. I'm thinking we need a date night soon!

Here is a picture that Dottie sent me from the train station:

The rest of our Saturday was spent by Lynlee taking a 2 1/2 hour nap and then being up until after 11pm. A late night trip to Wal-Mart and putting away groceries. Don't be too jealous ;)

Yesterday we had the family down for dinner. My dads sisters were in and it's been years since we've seen them. Its so weird but I always feel all grown up having people over. Lynlee was beyond exhausted by yesterday evening. She was mean and cranky. I walked into her room last evening and found this. I laughed so hard! She cracks me up even when I can't stand her attitude :)

And today was just a Monday. Mondays are rough. The kids are used to being with their parents all weekend so Monday is a huge adjustment. Lynlee has a hard time with Ryan working etc. But I do have to say it was one of the best Mondays this house has seen in a while and I'll take that.

Rambles, Updates, Late Wordless Wednesday...

I took the pictures for this blog on Tuesday. My goal was to get them up Tuesday night or Wednesday morning for Wordless Wednesday. Well that didn't happen as you can see. Looking at them now I can see that Lynlee doesn't look great. She looks tired, very tired. Right after the pictures were taken she started to come down with a stomach bug I guess. Ran a low grade fever and we changed a lot of diapers if you know what I mean. By Wednesday afternoon it seemed to pass. We had gotten labs drawn Monday morning so I knew everything was okay liver wise. Her labs were great. For the first time all of them were. Her EBV is coming down nicely (is that a word?) and her prograf was the same for two draws. Yay! I'm hoping everything is finally stable.

I finally downloaded the pictures to the computer last night and was getting ready to blog when Lynlee woke up for the 2nd time. She seemed very out of sorts. She was itching (her Eczema must have been bothering her more than normal) and she just didn't rest. I finally was able to get out of her bed at 3am. By 5am she was up and was screaming. I've never seen her act like that. For once I had  no clue what do with her. It was a helpless feeling.  I finally got her back to sleep around 6:30 in the recliner. We both slept there until 9 when I made it to the shower to start my day. She seems fine now. Guess it was just an off night?

So I got about 3 hours of sleep total. My brain is scattered. I'm typing and rocking Brody in his bouncer with my foot at the same time. I probably need more coffee. I probably need to eat something to soak up all the caffeine in my body. But until then here are my Wordless Wednesday pictures....

It was supposed to be about our normal evening. After Ryan goes to work and Brody and Lexi go home we usually have dinner and head out to enjoy the evening. It gets us out of the house and helps me from eating (another blog!)

It seems like we always end up doing the same things...

a Walk around the neighborhood

 

Oh how we love driving the mower

Bubbles

Taking a ride

And Pipers always waiting to play catch..

That pretty much sums up our evening. Every evening.. 

Saturday morning thoughts.

As I sit here sipping coffee random thoughts are running through my head.. So I thought Id share.

• This is the first morning I've drank my coffee in pure quietness in days, weeks maybe.
• I've got to be getting old when I wake up at 7am on a Saturday with no alarm.
• Today is Ryan's family reunion. I've been in the family for 6 years but I still can't remember half their names or who is who. Ryan's dad is the baby of 22 .. Yes that was 22 I didn't type that wrong. And well I always manage to get someone mixed up and just look dumb so I try not to say a whole lot..
• I wonder how Lynlee will do today. She will either warm up to everyone really fast or just stick to the people she really knows? We will see..
• Speaking of Lynlee... I know my mom laughs everyday. She was right when she used to tell me I hope you have a child that acts just like you.. Thanks mom ;)
• Lynlee will sit in her room and scream momma to me until I come in now. It doesn't matter how long it takes me. She will keep saying it over and over and over.....
• She gets really made if she finds out I unload the dishwasher without her! She loves it!!
• She is climbing everywhere. I guess she is getting braver. Before she would always hold our hand but not now. Not only can she make it on our bar stools, Ryans moms bar stools which are considerably higher than ours, I also found her on top of Brodys pack and play in the changing part this week..Wow...

The week has went by very fast. It didn't seem like we had a lot going on. Two therapies this week. Speech and PT. We got the week off from blood work and will go again early next week.

A picture from PT yesterday :)

And a couple randoms from the week. You can tell the last one makes me nervous because of my hand. Haha.

Well off to make something for the reunion and get ready for the day. Have a great weekend :)



July 17th 2012

I've been putting off blogging every night this week. I'm starting to fear that I will bore you. I don't have much to say these days. But believe me that is a good thing. No news is good news. And when we lead a very boring life I enjoy it. I enjoy the every day normalcy even if it does hurt my blog.

We have the week off from labs which is good. We have therapy scheduled this week and that's about it.

Our weekend was good. Ryan was finally off after working 12 days straight so we had lots of family time on Sunday and some of the day Saturday. Saturday we went to a wedding. Lynlee had a blast. She danced around with other little girls, ate her favors, and ate her dinner. She acted so good there. So normal. No one would ever known what the past two years have been like and that's a good thing. I want her to be a normal child. To put the past behind us and look forward to the future. That's why we did what we did, made the decisions we've made... for the future.

A new meaning to Hell on Heels

I walked in to my bedroom today and found Lynlee wearing my heels. HA!  She thought she was something else.

Tuesday Randoms..

There's never a dull moment around here that's for sure. Over the weekend I sit down for maybe 3 minutes when I noticed the house was to quiet. I went in to check on Lynlee. This is what I found.

                               

I have no idea where she found the pen but I guess she didn't find paper.

Last weeks labs came back. Prograf was good but liver labs were a little higher. I didn't worry to much because I had thought the weekend before she wasn't feeling great. Very cranky, loss of appetite etc. But it was also the same we were out of power and the house was so hot. However, today's labs were great. We were so thankful they were back down. Speaking of labs today, I am so proud of her. She didn't cry, didn't whine, not a whimper. Such a big girl. And the lab girls are amazing. They are so good with Lynlee and she always leaves with her and her babies wearing matching band aids. Today Lynlee asked for the band that they tie around her arm and they gave it to her. We've all had it one today! However the baby got the most use.

Her and the baby stay busy during the day. She will take her and put her in Brodys seat, in his bed, feed her, burp her, etc. I love watching her! I think having Brody here has been great for Lynlee. Shes a huge help too.

                                                                    

 I took this on the porch today!

I could probably ramble for hours. Lynlee went to bed super early tonight because she refused to nap today and Ryan hasn't made it home yet. I'm out of things to do around here or things I want to do is more like it.

This is as close as Wordless Wednesday as I'll get. Unless Lynlee and Brody do something exceptionally cute tomorrow and I sneak a picture or two.

weekly update

Somehow days slipped by and it's Friday. I haven't blogged in over a week. No wordless Wednesday, no nothing. And as I look back I have no good excuse. 

The good thing you haven't really missed much. There isn't or hasn't been a lot going on. We were one of the lucky ones that were only out of power over the weekend for less than 36 hours. My grandma and my mom on the other hand is still out from last Fridays storm.  I was worried Lynlee would be scared of the dark or whatever but it didn't bother her in the slightest. She ran room to room in the dark. Played with her flashlight and life went on. We did miss her music box at night. So bad that the second night Ryan would up every couple hours just to put gas in the generator so she could sleep.

We did go back for labs this week. Lynlee's prograf was a little higher than they wanted it last week. They made some dosage changes. The plan is for another level next week but we are still waiting on the results from this week.

A holiday in the middle of the week has messed everything up including me. I have no idea what day it is. Our 4th was pretty low key. Ryan had to work until noon. We had some family down for a cookout and that was about it. In case you don't have facebook here's Lynlee on  the 4th.

I'm resisting the urge to do last 4ths and show you how much she's grown. I'm sure everyone gets tired of that. But what the heck....

see...

She cracks me up. She's getting more and more of a personality every single day. Her temper is showing. Her stubbornness. She acts so much like me that it's scary. She's so independent.

This is her picking out her snack...

Over the past few days she's been an eating machine. She looks like she's finally gaining some weight. We've been trying. Adding oil and fat to everything. It's kinda gross actually.

And when in doubt give her ice cream. This was actually her purchase from the ice cream truck.

Well I think that's all for now. I feel like I need to be productive. Have a great day/weekend/ next week. Just kidding I'll be back before then! Hopefully :)