Day 2.. Still a success.

Well this was day 2 of Lynlee's new diet lifestyle. I'm not sure what to call it because I honestly don't know how long we will be doing this. It could be forever. I can say it wasn't  half as bad as I thought it would be. I had pictures of her being hungry, screaming at the refrigerator for yogurt, not eating anything, me having break downs, etc, etc, etc. Yes, I must have been very dramatic that day.  But she honestly hasn't seemed to notice. I'm sure she wonders where her yogurt is but hasn't complained.
I've spent hours and hours on the computer researching, looking for recipes, finding foods, and ideas. I've learnt so much in the past 72 hours. I can only imagine what the future holds. And the thing is I haven't found one thing bad about eating like this.

Lynlee has been a very picky eater lately. She does like a few vegetables, fruits come and go but her favorites are waffles, applesauce, yogurt, pasta, and hotdogs. Not what every mother wants to see but as most as you know toddlers have a mind of their own.  So my goal was to find away to still have the foods she wants just different, well better? The applesauce and hot dogs could stay. We only gave her 100% real beef anyways. I found a substitute pasta and changed our pasta sauce to 100% natural and it was okay. The waffles have been in the making. We made our first batch this morning and I LOVED them. Lynlee on the other hand did okay. She didn't eat them like her Eggo's (I know I'm not mom of the year so don't give me slack on that) but she did take more than 2 bites unlike yesterday. And the yogurt.. Well I found some SO Delicious at the health store. It was 2.80 a piece. Yes that's expensive especially when she wants to eat 3-5 containers a day. So I've been trying to make it. First batch was a failure, but I'm trying to freeze it now. And I have plans to make another batch tomorrow evening. I'll keep ya posted. For now I have 3 containers of yogurt hid in 20 containers of applesauce in our refrigerator door so she paces herself.

Her plate this morning looked like this:

Waffles, sausage, and hash browns with ketchup. All of them where diary free,egg free, soy free, wheat free, and of course peanut free.

Oh the soy kills me. It's EVERYWHERE. I even found it in her multivitamin today. Really?? So I had to go find a new one. Things I think will be okay has soy. I looked up restaurants today to see what she could have and well we won't even go there. It's sad. I told Ryan if we stopped at all of them she might have a whole meal. And just for the record McDonalds wont be a stop. It is full of soy!!

We do have an appointment with the allergist next Thursday in Pittsburgh. We decided to stay with them even though it's so far away because they know what they are doing and have dealt with this and transplant kids before.

And since last week was so crazy we've been getting caught up to date on our therapies. We had both speech and development today. Lynlee did really good in speech again. She even got another sticker and was drinking for a regular plastic bottle. For a child that didn't close her lips this is HUGE progress. And we have physical therapy in the morning.

I think that's about it. For now. I have another waffle recipe I'm anxious to use and a pancake one. Plus our menu for next week is looking better and better. I like a challenge!

Wordless Wednesday: Year comparison

It's no secret that I love doing comparisons. Here's last year to this year at the lake.

It was actually Lynlee's third year of being at the lake.. Here's all 3 years..

New challenges

Oh it's been a day. I almost blogged at 4pm but it's probably good that I didn't. I would have had a bad attitude toward this whole thing. It would have been a mean, emotional post. I'm glad both kids kept me busy and I only posted stuff on facebook instead of blogging ;)

The nutritionist called today and told me things I wasn't prepared to hear. Lynlee's RAST test was high in 5 areas. Wheat, soy, peanuts, milk, and eggs.. They want to cut all of that out and then gradually add them back in.

Well wait a minute, let me back up. When we were in Pitt Lynlee's Eosinophil level came back high. Eosinophil is a white blood cell. (There are actually 5 types of white blood cells) When the Eosinophil is high it indicated allergies, skin disease, or parasite infection. This is very typical in immunosuppressed kids.

I'm not going to lie. I still think this stinks. It's so hard for me to take from her and tell her no when this time I wasnt' sure she would ever eat. I just feel life is so unfair and after everything she's been through she should be able to eat whatever she damn well pleases whenever she wants. Yes food will always be my weakness with her.

But I have to get over that. It's not the end of the world and we will probably be able to introduce them all (well maybe not peanuts?)  back in and be okay. It's just another bump in the road that I wasn't ready for.

And don't get me wrong I know how blessed we are in life. But sometimes are just harder and today is one of them.

I guess it just makes life interesting for a while. And I guess this could be a new way of living that we all love. It's definitely healthier.

Lake Weekend and more.

It's 10pm and I finally have my last load of laundry in the dryer. I hate having laundry in the hampers. Does that make me weird? Regardless it's definitely been a Monday around here. I had lots and lots of catching up to day on EVERYTHING after being good most of last week and then all weekend again.

Lynlee's fever went away and we headed to lake early Friday afternoon. It's really one of my favorite places on earth. So peaceful and calm. I forget about my worries every time I'm there.

(this picture was actually taken from the beach area)



Friday, Saturday, and Sunday consisted of three main things. Food, Family and Fun.. Lots and lots of all 3 of them especially food. Lynlee loved every minute of it. She loved Skylar (her cousin) and did pretty well considering the week and how crappy she must have felt.

Lynlee with Skylar (in golf cart) and Lynlee and with Madison 

Besides them two (and everyone else) she loved spending time with her daddy. We've both missed him a lot this past week.

I'm kinda sad we only made on trip down this summer. And summer is almost over. But the memories are good. And we will do it again next year.



We were supposed to get labs done today but I called Pittsburgh this afternoon and asked if we could have the week off. I figure since they now know why the labs were so crazy there is no need to do a repeat until next week when things will calm down from the fever etc. They actually agreed with me. Plus she got stuck 11 times from Monday to Wednesday evening. The thought of her getting another needle this makes me want to cry let alone her.

Did I tell you why we were there last week they did an allergy panel on Lynlee. I do have the results but have no clue what they really mean so as soon as I talk to the nutritionist I'll give you an update. Good news is she is not allergic to dairy. The yogurt can continue :)

Speaking of allergies she does have some weird allergies/cold thing going on. It doesn't seem to slow her down just sneezes some and wipes her nose more. But I'll be glad when it's over no matter what the culprit.

Since it's taken me 45 minutes to type this I better just give it up! HAHA.

Till next time.



Whew what a week

I'm not going to lie. It's been a long 4 days (yes I'm counting today as the 4th.) It's 4 days that I hope we never go through again, but I'm not that naive. I'm sure it will happen again. One day. I'm hoping it's one day really far down the road.

Monday started out so good, so normal. We got up went for labs. Lynlee did amazing. One stick and we came home. She was her normal happy self all morning. Playing dress up, playing with Lexi and Brody.

Pittsburgh has it set to were we can check her labs online. I think it's an amazing feature. I hate waiting for results and for someone to tell me. So around 12:30 I checked them. I saw that her liver labs were crazy high. I got that sick feeling that I hadn't had in a while. Our coordinator called by 1. They asked if Lynlee was sick, if she had a fever, anything.... Well she wasn't, she didn't. So they wanted us admitted asap. Ryan had to work so his mom and I took off to Pittsburgh.

They first night was a blur really. Doing ultra sounds, getting IV's and blood work. Lynlee did so so good though. It was more of a sleepover for her. She was so relaxed. She was allowed to eat until midnight when she went NPO for the biopsy.

We thought the biopsy would be early that day. Actually we hoped and prayed it would. Lynlee was hungry, tired, and well we pulled everything out to entertain her that we could.

She finally went in for biopsy at 4:20. She fell asleep waiting to go in so it wasn't anything terrifying for her. It was honestly the first time I'd ever walked out of that room without sobbing. She was back in recovery by 4:50 and slept until 8:15. I've never been so thankful for her to be sleepy. She was on bed rest until 9. She woke up starving. Ate yogurt, applesauce, peanut butter sandwiches.

Yesterday was soooo long. I hate waiting to hear if we may or may not go home. I'd rather them just walk in and say okay go home right now with no warning. We finally heard the biopsy result after 4pm. No rejection. They didn't figure it was. Her liver numbers had came way down on their own at that point.  It was 10 til 6 by the time we officially got discharged and was in the car coming home.

And today has been crazy. We've been preparing for a trip to the lake for weeks. Ryan has already taken off tomorrow and we just needed a weekend to relax. Spend time with family and have fun. So today was a day of unpacking, cleaning, and repacking. Until Lynlee spiked a fever around 2pm. It was 101.6. she's been sleeping for 2 1/2 hours now. I hope it was something brewing for days that caused the liver numbers to go high to start with. I'm guessing it was. Or I guess she could have got it while we were there?

Regardless we are now on standstill. I'm hoping it was a one time thing. Her fevers never seem to last long. Her prograf is low and she's fighting stuff on her own. It's just frustrating. I hate seeing her go through so much. I would have gave anything to take her place this week. She's so strong. She's always smiling. She is amazing.

Sunday Catch up.

I thought while Ryan was outside working and Lynlee was playing quietly in her room I'd ramble catch up on the week. The past week has definitely been interesting.

As you know other than the Wordless Wednesday post my last real post was about doing the presentation. Well I've accepted. After every ones words of encouragement and belief in me how could I turn it down. I would regret not doing it. And this might just be another reason we have lived a crazy 2 1/2 years. And I know if I can just help one person, or educated one person about Urea Cycle or one person becomes an organ donor after hearing Lynlee's story than it was worth it. 

Speaking of organ donation, in the past two weeks I've had two different people tell me they became an organ donor because of Lynlee.

In the past week, I've had people reach out to me wanting to help with the presentation. People I would have never thought of. I can't begin to thank each of you for your kind words. And I might be taking some of you up on that offer ;)

In the past week, I've been reminded that actions speak louder than words. People never cease to amaze me in good ways and in bad.

Yesterday I learned that bathing a dog and washing a deck means more entertainment than we've seen for a while. Long story short. Lynlee fell in the mud, ate mud, all while I  wore a white shirt. I will need to rethink clothing colors next time.

It seems like fitness blogs are so in. I've actually thought about it. Well for like 2 seconds. I admire the people that do them. That post pictures of themselves every week/month whatever and put what they weigh. That has to hold you accountable and keep you on track. But the truth of the matter is that I would rather give a speech in front of 30 people before I put a picture on here of just me in shorts and sports bra. Let alone keep track of my weight every week.. For those of you that do it. Don't stop. You motivate so many. Including me.. and maybe one day I'll have that kind of strength and confidence too. In fact maybe that should be a goal for me?

On that note maybe Lynlee and I will take a walk in between rain storms.

Wordless Wednesday: Never a dull moment

Rock Band!

Story time

Here's the church....

:)

I know, Poor Piper