Tuesday, December 28, 2010

Let's Goooooooooooo


(and incase you forgot what we were sportin last bowl game!)

Monday, December 27, 2010

Christmas 2010

I was so excited for Christmas this year! I wanted to start some traditions of our own. I want Lynlee growing up knowing her traditions and what the true meaning of Christmas is all about. We've had our tree up since the weekend after Thanksgiving. I must say, it started out looking pretty but as I look over at it right now the ornaments are only on about 3/4th of the tree. I think it's Lynlees mission daily to see how far she can push me and to see what new thing she can try to reach.

Getting back on topic.. (sorry I'm still trying to regroup from this weekend) I want Lynlee to have three major traditions.
1. I want her to have Christmas jammies every Christmas Eve. This year we did this but her tube leaked so we woke up Christmas morning and had to change her before she opened any presents.
2. We will be letting her open one present on Christmas Eve.
3. No matter what our plans for the day are we will open our presents from Santa here at our house.

Lynlee did well this year,and we really enjoyed her. We started the morning at 7am. I'm not sure who was more excited, Ryan or Lynlee? I'm thinking it was Ryan! By the time Lynlee opened her second present she was pretty much done. She wanted to play with her new things. She would open the others if there was something she wanted to see underneath. If it was a box or clothes then she would just throw it to the side.

By 9am we were at Ryans parents. Lynlee opened a few and then took a nap. After her nap we pretty much opened the rest for her. There was just to much going in for her to pay that much attention to one thing. Later that evening we to my dads. By 8:30 she was more than tired.

Yesterday morning Lynlee got up and we put her new toys out for her to play with. She literally crawled around them to play with her old ones.


But that's how it goes right?

I hope each of you had a wonderful Christmas filled with lots of love, laughter, and family. The only thing I wanted for Christmas was to be home, not in a hospital. And God granted me that present!!

Friday, December 24, 2010

Merry Christmas

I Love too see how much Lynlee grows from day to day, week to week, month to month and year to year..

Here was Christmas Eve Last year:

And this is our picture tonight in her Christmas Jammies:

I Love her more every day if that is even possible!

I wish all of you a very Merry Christmas.

Saturday, December 18, 2010

The not normal things...

Considering EVERYTHING we've been through you would think I would do well with most scares. Well let me just tell you I don't. I do handle the blood work okay, the vomiting, the G-tube. All of that is normal to me. I actually saw a little girls belly the other day and for a second I wondered where her G-tube was. It's not normal for me not to see them. I remember the first time Lynlee had a heat rash. I actually asked the pediatrician about it. I totally freak out at the little stuff.

Well yesterday I thought would be a "normal" day for us. We (Ryan and I) were taking Lynlee for her ammonia level. She had vomited her 10am feed which kinda made me nervous because she hasn't thrown up for so long. Ryan knew she was fine so I tried not to worry too much. We get there, get the blood drew, and the level comes back at a 58. I was actually pleased with this. Two weeks ago it was 68. Now usually at a 58 I would get a sick feeling. Not that our team or anyone else really worries but I want a 30!! And I LOVE being in the 20's. Since Lynlee is cutting molars and about every other tooth in her body I try to play it off as that.

So we stop for lunch and come home to a normal evening. Lot's of playing with Lynlee, lots of family time, etc. Around 8:30 I got Lynlee ready for the bath tub. Actually her mommaw was here so she undressed her and I ran the water. I noticed Lynlee grunting in the tub, but didn't pay much attention. After her bath we were getting ready for bed when I looked down at her old diaper and it was full of blood. Of course I freaked out. I yelled out for Ryan, he came in. We made a few phone calls deciding where to take Lynlee. We decided on the local ER. So we headed there.

Thank Goodness the place was dead. We got right in, and they done some test. It turned out that Lynlee had a Urinary Tract Infection. We were home around 11:30 with an exhausted baby and some antibiotics.

She seems to be feeling better today. I know a heat rash is nothing to compare to a UTI, but the unknown is still scary for me!

Tuesday, December 14, 2010

So much to say today!

It must be the cold weather because I feel like being chatty. So here goes:

When I started this blog months ago I wasn't sure that anyone would read it. And I was shocked to find that I had followers. I thought that I would blog just about Lynlee, and even though most of them have her in them sometimes I blog about life. I think I'll start blogging more about life in general because I find myself not blogging enough or I tend to leave stuff out since it's not about Lynlee.

I read a lot of blogs. Most of them inspire me, some entertain me, and I'll even say that some, well I'll say some humor me? I won't go into great detail about any of them, but I want to make people aware that in my blog I never want people to take it as medical advice. If I say something about the way Lynlee gets her medicine or something we are doing with eating, or whatever, I want everyone to talk to their "team" or whoever! We've only been dealing with this disorder for almost 14 months, and we have SO much to learn! And I never want to be a know it all or have any mother feel downgraded by something I "say". If I do, I want you to speak up.. Send me an email or a message or something. If I write something that you feel is wrong please let me know. I want to learn too!!

So with that being said let's get to the fun stuff.. The stuff about Lynlee :)

She is all over the place these days. All she wants to do is walk! She is still pretty unstable on her own (we are working with this in our therapies) but until she gets a little stronger we use our fingers. It was breaking my back so we got the walker out. And she LOVED it. It gives her that freedom that she needs. And now she can walk when my back needs a break. Warning: Wear shoes at all times and yes, they need to have backs in them. Slippers with backs are now on my Christmas list and it would be nice if they were steel toe!

She has also learned to set up on her own. And it might be the cutest thing I've ever seen. While she's on her belly she puts her legs out to the slid in a split position and then walks hers top part up.. And the best part. Even though she has been doing this for two weeks, she still claps every single time she gets up. I LOVE IT!

Her eating has really taken off lately. Her new love. KFC Mashed Potatoes and Gravy! With 2gram of protein in the whole bowl it's a winner! She has ate a whole cheese puff (that was an exciting day!) and yesterday we tried our Sugar Cookies that we made. And when I say we, I mean I made them while Lynlee ran over my toes. Fun times!! But she liked them.. Take a look

(if you click on the picture it makes it bigger)

The day before that we gave her a candy cane. She sucked on it for a minute, passed it back to me (our new game, which she claps every time she hands something back) I gave it back to her, she took a few more licks, then she made a couple laps around the kitchen in her walker and kept stopping by to see me with her mouth open wanting another lick. Man, I love her!!

After months, and months of shaking her head no, she can finally shake her head yes. We've also been working on sign language because her language skills are a little behind. She signed please for me last evening. I was thrilled! We know she will talk, but we just want to make sure she is doing something to communicate with us. She says hi often, and occasionally says "da". UH OH came last week but it's a rare occasion. I'm secretly still praying for mom. :)

Well I think all of that sums us up for now.

Sending happy and WARM wishes to everyone!

Thursday, December 9, 2010

One year

Can you remember what you were doing this time last year? I can! I can remember exactly what I was doing at 3:15pm on December 9th, 2009. I was pulling in my drive way for the first time in 7 weeks. I was sitting in the back seat with a screaming baby ready to come home. I remember it like yesterday, but it feels so long ago at the same time. It might have been one of the best days of my life.

Oh how I can't believe a year is passed. I can't believe the knowledge we've gained in a year. The things we've been through and the milestones that have been accomplished.

Not once in that year have I taken being home for granted. I love this place. I love sleeping in my bed every single night. There are so many memories that have been made here and more to come.

I remember being so scared coming home. We didn't know how stable Lynlee would ever be. We didn't know all the signs to look for. For weeks maybe even months I would stare at her while she slept praying she would wake up. I was a mess. But somehow, someway things got easier. I can actually go days now without thinking will today be the day she gets "sick". I didn't think this would ever happen especially a year ago.

When I right this blog next year I'm hoping I've gained this much knowledge and more. I'm hoping that I'll be more confident "reading" Lynlee. I'm hoping her stability continues and I'm amazed at how long we've been with low ammonia's.

So here's to hoping and to another year at being home!

Thursday, December 2, 2010

Catching vomit?!

After my last blog, which was a little less than up beat, I got many responses. Some were good, some weren't, but none the less I learned a lot. I learned that every one has bad days and only some of us decide to post it (now I know why some of you don't!) That all mothers question there skills. But from my UCD family I learned so much from each of you! Thank you to my UCD family because without you I don't know what I would do.

As I was reading the comments one mom told me that her son vomited so bad that she would catch it and give it back to him. Some of you might be thinking WTH? But I thought it was genius!! I mean it's just formula and you don't know what you are really losing especially all that precious medicine.

So let me take you back to Tuesday. A nasty rainy day so Lynlee and I decided to head to the mall (I'm so glad her and I think a like sometimes) and on our way I thought we might as well get an ammonia level and be done with it for a few weeks. Lynlee and I was playing in the chairs when they came out and told me 94. So I took her straight back and we did a repeat. 72. Ugh, still not great but not so terrible either. After many conversations with our team in Pittsburgh we came up with a few things. We get a repeat ammonia tomorrow. And as of yesterday we cut our day feed my 30'ccs and added them to our night feed to see if that helped.

I also tried gravity feeding her for the first time ever. For those of you that aren't up on all of this tube feeding talk it simply means pour the formula in a syringe and let gravity put it in her belly instead of using a pump. We started with 35cc's and 15minutes later did 35cc's more then 30 minutes later did 50'ccs.. The outcome wonderful. We've went through 5 day time feeds now and no vomit. Also a plus, what took an hour to feed now takes minutes. She isn't hooked up, she doesn't have to set still, what a relief.

I have to admit as I started it there I was following her around with the puke pan to see what it would be. Was I really going to pour it back in? Maybe, well honestly probably. I know it sounds crazy and even my own mother told me I was over the edge on this one.

Last night during her 10pm feed she woke up and was rolling all over the place and started to spit up. So me and my trusting puke pan caught it. I would have said it was nothing before. It turned out being 30cc's which is an ounce. It's also not even a third of what she vomits. So I know for days she was losing more than half her feed.

I hope and pray this is what was causing her ammonia to be crazy and by "fixing" this we will have a lower number tomorrow. Prayers are welcome as always!