Friday, August 31, 2012

Potty Training.

This is week has been rough. It's Friday night and I'm on my first second maybe third glass of wine. I'm tired. I need more relaxation than is possible at the moment. Lynlee has only slept through the night once this week. We've been up 3-4 times a night and I'm exhausted.

After the poo incident this week we thought it might be time to start potty training. I've maybe lost my mind and this might explain the wine. Today was day two of potty training and I'm not sure we are making the right decision. I'm not 100% sure she is ready. She has more accidents than actual pees in the potty but when she does she is SO excited. I was ready to throw in the towel today and she actually did it on her own? So I keep trying for now. I know that when she drinks out of her sippy she goes so much longer without peeing but when I have to give her fluids through the tube she will be 3-4 times an hour. I feel like I'm sitting her up for failure. But at the same time I can't let her get dehydrated.

We have a chart that she puts a sticker on when she does pee or poop in the potty and she has a special snack she gets too.

I'm curious on how well/fast your children got it?

All of the potty training does have some cute pictures. And I still can't get over how cute she really looks in panties.

On a side note Pittsburgh called and Lynlee has no parasites. Nothing to explain the high white count. It was actually much lower when they redrew it. So maybe it was just something that happened with the stomach virus that fixed itself?

Wednesday, August 29, 2012

It's Wednesday

Instead of Wordless Wednesday I thought I'd just do a weekend recap/update/ complete randomness for you. In all honesty I don't have many new pictures so I thought I'd take up some space with some words.

Friday night Ryan and I went to Graceland Inn for our anniversary dinner. It was my first time there. It was AH-MAZING! Best food I've EVER had (and I truly mean this) and the atmosphere is so nice. We sat our on the veranda enjoyed the wine, the view, and each others company. It was so nice. If you haven't went I recommend and for those of you who think like me (it's soo expensive) it's really not. We've spent more at Applebees.

Saturday was a busy day. We had a wedding and we went to a benefit for a young man in our community. He had a kidney transplant a few months and is doing great. If any of you would be interested in making a donation please get in touch and I can get you some info. Part of the benefit included getting your picture taken and getting an 8 x 10 for 10.00 The turned out so good. For those of you that don't have facebook here they are.

Miss camera ham would NOT smile in that crate! Really?!

We haven't heard anything back about the blood work we took last week. I'm supposed to call today sometime. In the past 3 days she's been in big trouble because I've SEEN her lick the dog bone, lick the dog toy and we wont even discus the poo incident we had Monday. So I won't be surprised if she does test positive for a parasite or something. 

The joys of having a toddler.

I walked in her room and found this. She cracks me up!

And she thought Brody should wear her hat. At least she's sharing!
I'm sure something happened on Sunday, Monday, and Tuesday that I wanted to mention but last night was night three of no sleeping for Lynlee? She goes through these stages but I'm looking forward to the sleep every night without waking stage to come back soon. I'm tired and my mind is gone.
So Happy Wednesday! 


Friday, August 24, 2012

Allergist update

Lynlee and Aunt Heather waiting on the doctor

Yesterday we went to Pittsburgh to see the allergist. I told Ryan I would be thrilled just to get soy back into the diet but I wasn't getting my hopes up. I almost fell off the chair when the Doctor said we could have them all back.

I'll explain..

It's true that Lynlee's Eosinophils (one of the white blood cells) are very elevated but it hasn't always been this way. When they looked at the graph it became elevated after May. Lynlee did have that bad fever and stomach virus late May. It made her liver levels go sky high and blew her EBV through the roof. So did the EBV raise the Eosinophils or did something like a parasite raise the Eosinophilis and caused the EBV to go up? Well we don't know the answer to that. I'll get back to you on that next week. They did lots of labs which will tell if it a parasite or something else? The Allergist was going to get some info, talk to other doctors including transplant and infectious disease and we will go from there.

She did say that the RAST panel could be a false high and unless Lynlee showed she has an allergy to a food there is no need to take it from her. She didn't even feel the need to do a skin test on her. Lynlee has never had an allergic reaction to any kind of food but said that could change any day. Just like it could with any of us. They did send us home with an Epipen just because she was a transplant child but said they wouldn't for any other. I think it helped her sleep better at night, because her eating peanuts is the least of my concern these days.

I think that sums it all up. We actually know nothing at this point except Lynlee was one happy girl at dinner last night, and going to the grocery store will be a little easier on me next time. I do know that I won't take not having allergies for granted and truly admire the people that have to live like that all their lives. It has to be so hard!

Thursday, August 23, 2012

Happy 4th Anniversary

It's hard to believe that 4 years ago I married my best friend, my soul mate, the love of my life. The past four years have flown by. We've had so many good days and great memories, and we've also had harder days than we could ever imagine. We keep saying that if we can get through this we can get through anything. Well after all of this I think we have it made. There are days when I don't know how I will get through, but with you I always do.  The days of doubt, the days of worry, and the days of sorrow are when I need you the most. The days of happiness, the days of joy, and the days of love is when I want you there the most. I'm not sure what the future holds but I know as long as we are together we will be OK!


We might have changed over the past four years. The way we look, the way we act, the things we do, but our love hasn't changed.. Well maybe it has. It's grew stronger.

You're the best husband and father I could have ever ask for. I love you to the moon and back!

Happy Anniversary Ryan!

Wednesday, August 22, 2012

Wordless Wednesday. Just a normal day

Tummy Time

Looking for a spoon! lol

Someone found his toes!!

Unloading the dishwasher. Ha!

Tuesday, August 21, 2012

This, that, and more

Today has been a bad day. Just one of those days were it feels like you wake up exhausted. Brody and Lynlee were fussy, needy, whiny most of the day. A day were it feels like my to do list was getting bigger and nothing was getting checked off. The good news is that it's normal. It's normal that I had a bad day because of "normal" things not because of anything medical related.  The truth is I probably just need a good nights sleep and tomorrow will be better.

Yesterday was non stop kinda day. I had planned on getting lots of stuff done Sunday which didn't happen. Yesterday started with labs by leaving the house at 7:30am. (Labs are back and are almost normal again!!!) Then the rest of the day was just nuts. I finally got the yogurt to thicken. I stole thisrecipe to do it but I still had to add some Xathan Gum. I used the coconut milk out of the carton instead of the can. I'm assuming this makes a difference? I'll let you know with the next batch.  Piper had a vet appt yesterday evening and I had to go to the grocery store. Let me just tell you I hadn't prepared myself for it. I know our usual trip takes 30-45mins. I had found some new recipes to try so I knew exactly what I needed. But I hadn't thought I would have to read every single label I picked up. I ended up being there 1hour and 40 minutes. That doesn't include carrying everything in and putting it away. I'm hoping the grocery shopping part gets easier and faster. The rest hasn't been so bad but snacks are so hard.. Ideas anyone?

I'm sure it was better that I was there on a Monday night instead of a Sunday. Maybe it was a good thing I blew it off. Honestly there is a fine line between blowing it off and being hungover not up to par. Saturday we went to Wine & Jazz and had a blast. Lynlee stayed with Ryan's parents and everything went well.

I'm very surprised Heather and I  look so good after guzzling sipping on wine and fine foods for 4 hours. And that chair. Oh I loved the chair. I'm pretty sure I even asked to sleep in it. (Another story!)

Okay that's it. I have toes to paint and a pillow to lay on! See everyone tomorrow for Wordless Wednesday :)

Friday, August 17, 2012

So Delicious?

In case any of you where wondering what Lynlee thinks of her new Ice Cream.

So Delicious. Does it live up to it's name?

Yes! Two thumbs up!

We also found the sunflower butter today to substitute for the peanut butter. And I haven't got all Betty Crocker (yet) and made her own bread so she had it on a corn tortilla. I did make some pancakes today that she loved! So maybe breakfast will be better tomorrow. I made a whole bunch and stuck them in the freezer!

Her rice pasta with Marinara sauce and her sandwich.

Another good day in this house!

Lynlees headed to her Vava's and Poppas tomorrow while we head to Wine and Jazz. I'm not sure who's more excited.. I'm lying I'm sure it's me. I could leave right now! HAHA.. I'm pretty sure no pictures from the weekend will be posted later ;) but have a great weekend!

Thursday, August 16, 2012

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!

Wednesday, August 15, 2012

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..

Tuesday, August 14, 2012

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.

Monday, August 13, 2012

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.

Thursday, August 9, 2012

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, August 5, 2012

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.

Wednesday, August 1, 2012

Wordless Wednesday: Never a dull moment

Rock Band!

Story time

Here's the church....


I know, Poor Piper