From bad mood to good

Today I want to talk about Lynlee's speech. It's so frustrating for all of us to have a child with a huge speech delay. Now don't get me wrong. We are so thankful for Lynlee, how far she has came, and all the progress she has made etc, etc, etc.... I haven't forgotten about that but some days it's hard to remember that.

 I can't ask her a simple question like how was your day. I have to say things like was your day good or bad. The open ended questions like what did you do today are usually too much for her. She can tell me by acting out if she colored, she can say nap but she usually can't tell me what she had for lunch or anything like that. It stinks.. There are days when I'm frustrated with it. I just want her to talk so badly and it be so easy for her. But it's not. It's very hard for her. She even gets frustrated occasionally but in general does very well getting her needs and wants met by the little words she does have.

So we ordered a special CD that she has been using in Speech. If we are in the car she will occasionally sing/hum along but I can never understand her. So today when I put in the CD and she was singing the words with it I was crying like a baby. I knew she did some of it in speech but just to hear driving down the road was all I needed to today. My bad mood instantly lifted to good and all is okay in our world..

Keep Singing Lynlee!

Getting caught up

I'm not sure where February went but I went the whole month without a blog post. I don't think this has happened in the 4 years I've been blogging. I'm not trying to stop it all together but some days just feels like I'm done or I'm over it... And then something happens. Something that I don't want Lynlee to forget and I think I need to blog that.. And I get busy or tired and I miss it..

But todays post are all good things.

First and foremost Lynlee is off of steroids for the first time in 7 months! This is huge! I wasn't sure when this would happen. Her rejection last June was hard on her. Going from nothing to up to 40mg of prednisone and to finally wean off has been a huge adjustment. We went for labs early February when they decided to start a wean again. We went on hold with everything after the drain was in and then out and such... Labs on the 10th were good. We weaned the steroid to every other day with repeat labs in two weeks. We went back for labs on the 24th and they were even better. So the steroid was stopped. I didn't think the wean would effect her any but it did. Every time we did a wean she was irritable and mean some worse than others. We have labs again in two more weeks and will start weaning other meds (that were added when the drain was in) if everything looks good.

Second big thing that happened was Lynlee was signed up for Pre-K in the fall. This happened on Friday. It was a big deal. Not so much for anyone but me. I sat in the car crying for 15 minutes before I could even walk into the school. I'm sure they think I'm nuts. And then they ask me if she would be riding the bus. I literally laughed at them. The lady was so nice and understanding and even said I could follow the bus by car if I wanted. I wasn't joking when I said I would probably be doing that daily.. 

Other than that things are pretty much the same around here. Lynlee is going to day care 3-4 days a week right now while I'm working. She had a Valentines Day party where they decorated cookies and had a blast. Here is the picture I've been meaning to share with you...

She also has speech therapy twice a week. So there is rarely a day when we having nothing to do or no where to go. Sundays are still the only "family" days we seem to have with everyone's crazy schedules .We always take advantage of that!

Until next time... I promise it wont be a month from now!

January has flew by.......

I'm having a hard time believing it's already the end of January. It could be because the weather has been terrible and all my days run together but I will not spend the whole blog complaining about the weather. We have done a lot of laying around and being lazy though.

We have had a great month. Lynlee got a new floor in her room..

Last weekend we took Lynlee to the movies to see Frozen ( I highly recommend going to see it if you haven't.) It was her first time going. It took her a few minutes to get comfortable there but after about 20 minutes she was eating popcorn and watching it on Ryan's lap. When the movie was over she literally was sobbing and saying MORE!

This week was her second week at day care she loves it. She seems to be adjusting great (I am too in case you remember the last time I blogged) she is even napping there for hours at a time. She hasn't napped for 2 years so this is huge. I'm so glad that she can just lay down there and nap but we do miss the 8pm bedtime.

Last night Lynlee went bowling for the first time. I think she is a natural ;)

 

It's supposed to be warmer tomorrow. I see lots of playing in the snow in our future. Stay warm! 

A New Day

I'm having a hard time keeping up with everything. Blogging always seems to fall last on my list. Even though we seem to be busy I always feel like I don't have much to write about.  So no news is good news from us.

Today has been a day. A long day and while dinner is in the oven I thought I'd catch up real quick.

Lynlee hasn't been in "school" since October when she got her drain put in. There were a couple things going on we weren't too happy about and when she got the drain we were afraid of it being pulled out so we didn't send her. When it got out I decided to make it work with our families for the time being. Well that's easier said then done. While our family is amazing it was a lot of traveling on both me and Lynlee and at the end of the day she wasn't being around any kids. I feel like she needs to be around them, play with them, learn to play and share and all of that. So we started looking for a sitter/day care at the beginning of the New Year.  She started the Day Care today. I was a nervous mess. I still am. She said she had fun and wants to go back tomorrow but it's momma having the hard time. I could wrap her in a bubble and home school her in a heartbeat if I could....

As if that wasn't enough to set my nerves off we had labs today. However they are great. Even with the runny nose and sneezing from last week. What a relief..

Tomorrow is a new day. 6 hours of day care. I'm sure she will be fine and love it.. Me on the other hand.. Well just pray for me...

Baking, playing, Christmas, more playing

I finally set down to right about the old year, the new year and everything in between when I realized I haven't even blogged about Christmas. So the New Year post will have to wait.

We had an amazing Christmas. Lynlee loved opening presents this year and helping everyone. When she got up on Christmas morning she asked if Ho Ho had come. So she really got it this year. Sending Tootles back to the North Pole was harder than I had imagined. She puckered up and whimpered on Christmas eve when we said our goodbyes. It broke my heart!

Here's a few pictures to show what we've been up too :)

Baking Cookies. Daddy got to help this year!

 Christmas Morning. I'm sure SANTA thought a microphone would be a great idea. However at 7am the next morning with a microphone in my ear screaming MOMMA UP the microphone wasn't so awesome!

 A Jeep like her daddy!

And we've done lots and lots of playing with new toys!

Two years.

I can't even believe it's been two years since Lynlee's transplant. Part of me feels like it's been so much longer but I can remember it just like it was yesterday.

I know I say this a lot but we are blessed. So beyond blessed. I wouldn't wish what we've been through on anyone or especially any child but it makes days like today and holidays so much more special. We never take any day for granted. We are thankful for each milestone or each new word Lynlee says. Each day is something new and exciting for us.

This morning I was sitting in the living room alone. I was thinking about the past two years and how far Lynlee has came. Tears were dripping off my face when she walks in at 7am with her sunglasses on and her head band. These are the moments I love most. That she makes me laugh. Every single day she makes us laugh. She has this personality I can't even begin to describe but she brings joy to everyone around her. Even strangers stop and say hi.

We will be spending the next two days with our families. I honestly can say that I don't think Ryan and I would have made it through the past 4 years without them. They have helped us in more way than I can count. I'm thankful that we know the true meaning of Christmas and we can be around everyone we love.

And I can't end this post without mentioning her donor family. I think of them every day but my heart hurts more today for them. I hope they know that their loved one gave Lynlee a future. A future of hope. I hope that it eases their pain just a little to know that its a gift that money can't buy and I'll never be able to thank them enough.

We wish you a very Merry Christmas! And while your around your family talk about being an organ donor!!

Snowy Day Fun

 

Today we woke up to it pouring down the snow!!! Lynlee started asking to go out at 7:45am. The two of us bundled up around 10:45 and went out and it had already turned to rain/sleet. But we had a blast

 

 

We had to make her come inside for lunch. After that she went plowing with her Dad and then we headed over to Ryan's parents to go sledding.

 

 

 

 What a fun day!!