Friday, February 24, 2012

2 months!

It's been 2 months to the date since Lynlee's transplant. 2 months! That's crazy isn't it. Part of me feels like it was just yesterday and the other part feels like it's been longer. The progress that she has made in 2 months is what makes it feel longer. I know I say it all the time and you might get tired of reading it but she is a whole new kid. I think I say it all time is because I still can't believe it.

Not only is she eating (still not 100%, but 100% better than what she was doing 2 months ago. She's getting there. She's doing better, she WANTS to eat! We are working with therapy now because she doesn't really know how. She's never moved food from the front of her mouth to the back and she just has very low muscle tone. We had our speech evaluation early this week. Her receptive skills are right on for a 28-36 month level but her expressive skills are low. Really low like around 12 months. I know its' not going to happen over night but her muscle tone will get better. And when it does her eating will be better as well as her talking (expressive skills.) And then I'm going to be blogging that she won't shut up! Oh how I long for that day!!

We are doing our other evaluations next week so I'll keep you posted on those.

I was going to blog on Wednesday, already had my pictures picked out but didn't find the time. Since Ryan's been off we've been working on the room. And yes I mean WE. We get up most days and get Lynlee her meds, have breakfast and start. We work all day long until around 5. I don't work past 5. HAHA. But of course Lynlee gets meds in there, and we stop for lunch, and I stop like 10 times to fix Barney or have her show me whatever she needs. But I can say that she plays so much better by herself. I usually check on her long before she needs me. It's funny to watch her play now. She has her own imagination now.

I don't think she just got an imagination in the past 2 months but I do the ammonia bothered her. I'm not sure if she was just so irrated all the time that she couldn't sit down and play or if it kept her from focusing or what it did but I do know it's better now. She's more happy, more content. Like I said she will play by herself. And she loves puzzles now. LOVES them. We will do them over and over. The other night the three of us sat in the floor and did the same 4 wooden puzzles for over 45 minutes. And this would not have happened before.

She also understands commands better. Which definitely works to my advantage. Last night I said Lynlee we are not going to go see your mommaw and papaw until your toys are picked up. Let me just say it didn't take her long to get the toys picked up and put away.. I also use this line a lot now. Lynlee if I have to do (insert command) then you can't watch Barney.. It gets done immediately.

And her hair... It's growing! It's shiny, it looks healthy.. Yes, it's thanks to all that protein she gets now. I also think her balance is better. And she climbs stairs, and climbs on the couch, and really climbs everywhere.

I'm not bragging (well maybe just a little) but I'm just trying to give an update at how great things are now. How healthy and normal she is. It's amazing how much has changed in 2 months.

I know that our journey post transplant has just begun. But it's a journey that we welcome with open arms. It's a journey that we are thankful and hopeful for. It's journey that we needed to take, and that we look forward to.

Sunday, February 19, 2012

I haven't blogged in what seems like a while. When I was so used to blogging everyday even just a few days feels like I've missed something. I've wanted to blog, like every single day since Friday but I just can't find them time. And when I do have a free second to myself I just want to relax or be on pinterest. HAHA. Sorry I've addicted!!

Today was day 3 of Lynlee NOT taking a nap. On Thursday she took a 2 hour nap and it was past 11:30pm before we got her down. This is not going to be a habit. So on Friday we were kinda busy, had some company and it was 5pm before we knew it. She wanted to nap, but I don't even think so at that hour. I'm not sure if she's grown out of it, or if she just sleeps in so late that she doesn't get tired until later in the day. But even waking up at 8:30 won't get her an early nap, so I'm kinda torn at what to do. Either way her up a lot earlier or just skip a nap and get her in bed at 8pm.

Of course we've had a little drama, more like bad luck following us. It's actually been a crazy week. The last time I blogged I was asking prayers for my dad. He's good. They had found a mass on his kidney in Janurary and made the decision to remove the whole Kidney on Monday. He was home on Wednesday and it doing great.

On Thursday Ryan was working on the addition when he shot a nail in his hand. Well really threw his hand. His nail gun jammed and he held it up to see. Ending up shooting a nail all the way through his palm coming out the other side. We went to the Express Care thinking they could just remove it. But they couldn't. Long story short he ended up going into surgery Thursday evening and getting it removed. He came home an hour or so afterwards but it was a long scary day. I'm praying no other members of our family go to the OR anytime soon!!

So Ryan is off for a few weeks. They had to cut his carpel tunnel release to get the nail out. He can't lift anything more than 1pound with his left hand. Until today he was on heavy pain meds so it looks like Lynlee and I will have some company around the house for a few more days.

She isn't complaining though.  Her daddy is the best thing ever to her! And I kinda like him too :) We are just thankful that the nail didn't break any bones or hit a nerve or artery. It could have been so much worse.

That's pretty much the low down. Everything is great with Lynlee. Pittsburgh called on Friday and said we didn't have to get labs until next week instead of this week! I'm beyond excited about this. She is growing up so much and just learning more than we ever though, but that's a whole new post for another day!!

Wednesday, February 15, 2012

Wordless Wednesday: Bean Bag Chairs!

Oh it's nice to be able to do to Wordless Wednesday in the middle of all this craziness!

Yesterday we were putting together one of Lynlee's Christmas presents. Just for the record I'm not a fan of actually putting a bean bag chair together! I prefer to buy mine already filled.. With lots of spilling, a few choice words, and learning that Styrofoam sticks to everything!! But Lynlee had a blast "helping" clean up!

Tuesday, February 14, 2012

Daddy's little helper

We've literally been non stop all day. Today was our first day getting labs at our local hospital. I was up before the alarm was supposed to go off at 6:45am. I guess I had a bunch of nervous energy. We've had access in for almost 2 years so the thought of them having to get a vein makes me scared. However, I had nothing to worry about. They got her in the arm first try.

Ryan has been working at home a lot these days since business is slow and we have so much to get done. He has also gained a helper!

That picture puts a smile on my face. No way around it!!

You've heard me say our house is a mess.. Well it really is. I can't find the matching pair of either of these shoes.. And those of you that really know me, knows this drives me nuts! I'm such a "matcher"

Today is Valentines Day. I've never been huge on the holiday. I really think it's overrated and expensive. I don't think that I need Ryan to buy me a card, flowers, candy, etc just to show me he loves me. If he doesn't show me every other day of the year then we have problems. I usually let him buy me a card and that's it. However, this year I vetoed that. I enjoy alone time with him and will take it anytime I can get it, but it probably won't be tonight and that's okay.

I was feeling a little festival for lunch so our pizza turned out like this:

And I'm making a nice dinner tonight, and staying at home with the two people that make my life complete.

It's also National Donor's Day. Are you a donor?? Ryan and I are! Of course, how awful would that be if we weren't after needing someone to give us their liver. Have I mentioned that we have thank you letters to mail back to the donors family? They gave them to us a few days after transplant. I haven't wrote ours yet. I've thought about it a few times but I can't seem to find the words. And honestly how do you thank someone for the gift of life? For a normal life with no brain damage? I just don't know how the words thank you are enough. And I don't want to write it too soon. It's only been 7 weeks.

But Happy Valentines Day to you. And consider being a donor if your not. If Lynlee was your child you would want someone to do what they did.

Sunday, February 12, 2012

Home and more!

Hello from the HOME!!!

We got released from Pittsburgh this past Monday but tonight is our first night at home! I'm excited! Don't get me wrong it was nice to be back in town and Ryan's parents house is like a second home to us but it's just not home. Nothing beats sleeping in your own bed.

Our house is still far from done and things are still far from normal. Lynlee has no bed. And when I say no bed I mean it's apart and against her old wall (our new office) and where the head of her bed was, well it's now our doorway into our new bedroom. Hopefully in a few more weeks our room will be done and her new room will be painted and bed up. That is if she ever sleeps in it again.

She has got really used to sleeping with me. She would scream every time a nurse came in unless I was with her. Then at the Ronald McDonald we only had one bed so we didn't have an option. I'm pretty sure she has became accustomed to this. Worse things happen right? I mean so what if she's 16 and still sleeping with us! HAHA.

Ryan and I spent the whole day painting yesterday. It's been a LONG time since we painted together. I was impressed with how fast it went and how well we got along.The last time I painted he came in and repainted what I painted.. Yea, that wasn't pretty!

Today I spent the whole morning cleaning house. We did have some drywall dust around and I wanted it to be spotless before we brought Lynlee home. This afternoon we went to get Piper! Do you remember him? Our dog! I think he thought we abandon him. I can't say that I would blame him. It's been over 7 weeks since we've seen him. He was SO excited to see us!! I'm glad to be home as a family with Piper by our side.

We did have Christmas with my mom and grandma today. Christmas in February was kinda nice. I had forgot what I asked for! LOL.. Seriously all that mattered was spending the day with everyone. I really missed them!

And for the real reason everyone reads... Lynlee is doing great. She's babbling so much. Eating some. Not as much as I would like but we've came a long way in just a few weeks. Things are pretty normal here. We have a pediatrician appointment tomorrow and blood work Tuesday. It will be nice to get bloodwork at a hospital less than 5 minutes from our house rather than drive 45 minutes to one! These are the things that make me smile!

And another thing that makes me smile is 2 piece pajamas. Lynlee never really could wear them because of her night feeds and I was afraid of her pulling her tube out or something else happening so we always wore the 1 piece and cut a hole in them. But since her night feed has stopped I'm not sure if she will ever wear a 1 piece again.

Well that's all for now. I'm going to go enjoy a glass of wine and some cuddle time with my husband!

Also asking for prayers for my dad. He is going into surgery tomorrow to have a kidney removed! All the thoughts, prayers, and support are greatly appreciated!

Tuesday, February 7, 2012

Home at last!

I feel like it's been forever since I've blogged. Only 4 days, but a lot has changed since my sobbing post on Friday!

Ryans mom came to visit Saturday! We were sooooo excited to see her and have some company.

Sunday was a beautiful day in Pittsburgh. We ventured out to do a little shopping. I was trying to get some things bought so that Dottie and Ryan could pick out paint for our bedroom. We also hung out upstairs most of the evening. Played with the kids and watched some of the SuperBowl.

Lynlee started calling Dottie "Va,va". We were upstairs talking to the Brazilian family and we learned the Brazilian way for grandmother is Vava.  Lynlee hasn't got "mamaw' but she can definetly say Vava.

On Monday we went to clinic. We actually had labs first. I was so nervous about it. I hadn't worried about getting blood for 2 years and was so scared about what it would be like not having a port/Picc. But they got her first stick. How relieved. Then we headed to clinic... I had prepared to give them a speech saying that if the potassium was low we would drive up for weekly clinic if they would just let us go home. I was prepared for what they said. They said we could go home (if the labs we got drew that day was okay)and get labs here weekly and then be back in Pittsburgh on March 5th. 

I almost cried when they said the word home. It's been 6 weeks....

Her labs were great yesterday. Her potassium was back to normal. Her liver numbers were perfect. We were packed and ready to head home by 2:30. We pulled into our house before 5:30..

So we are home. Well kinda. As you've heard me say before we are doing some construction (adding a master bed and bath) and they are mudding/sanding this week. So we've been staying with Ryan's parents until the sanding is done. I don't want Lynlee around all that dust, and being woke up at 7am every morning to men in our house that she doesn't know. Plus, I don't want to be up that early either.

We did go over all afternoon. Got a lot of things straightened up. We should be home by the weekend. Either way we ARE home. Ryan, Lynlee and I are together again. Our family is complete. I count my blessings every night.

Friday, February 3, 2012

It has been a long, draining emotional day. I'll be glad to start fresh tomorrow.

As soon as we got up at 7:30am Lynlee slipped on the floor and fell. She has a huge bruise on her face. Don't worry you'll see it.. You can't miss it on the pictures we've took today.

Then we got to the lab. I don't even dread it. I mean Lynlee has a Picc line, there are no sticks, its pain free and we are back within minutes.. Except for today. As soon as they flushed the line I saw something leaking. I was hoping it was in the cap. Then they drew back blood. I saw it leak too. I asked if that was okay? I saw them look and then I saw her face. I knew it wasn't good. They said the outside line had a break it in. That there was no fixing it. To go to the ER. They went ahead and stuck Lynlee for the blood they needed today.

We came back to the room got Lynlee's meds for today and went to the ER. At first they decided to "fix" it. Even now I'm not sure if that was possible. There seems to be a lot of confusion if a line can be fixed. I finally said no to the idea when transplant said they didn't need the Picc line and when I found out they were going to "fix" it by holding her down, rewiring the Picc with no sedation. I know it's not supposed to hurt but she would be traumatized by that.  So we came back with no Picc. I'm still torn about losing it. I hope they can get her blood without sticking her to death. For almost 2 years we've had some sort of access. Either Mediport or Picc. So it's just different. But the dressing change that had to be done every 7 days was more traumatic than a stick to her. It was awful and it hurt! And not to mention the risk of infection that one has.

Lynlee setting in th ER. Eating graham crackers and drinking her juice! Oh and see the nice bruise!

And the best news about being Picc free is we could bath.. We were two happy girls around 7:30 this evening..Her first bath in 6 weeks!!  And her feet finally smell good. (she's so going to kill me for this blog!)

So I had finally got my mind in the right place when I looked up Lynlee's labs for today. Her potassium was higher than what it was before we started meds.. And her prograf lower than it's ever been. Ugh. I could feel the stress building up. So they called at like 5:15 and wanted to start her on another med. The pharmacy hospital was closed so Lynlee and I had to walk to Rite Aid and get it filled. I called Ryan while I was walking sobbing. I just want to go home so bad and I felt like this set us back. I feel like we can't get close enough. And I know its crazy to want to go home early. They told us to prepare for 3 months. It's only been 6 weeks. I know they will get it figured out. I also know that they can put a Picc back in if needed. It's just been a long day. And obviously I'm rambling.

But today wasn't all bad. We went to the playroom for an hour or more. Lynlee napped for like 15 minutes in the ER so an afternoon nap was out of her plans. So we played.. Here's miss thing posing.

Ryan's mom is coming tomorrow to stay a few nights. I can't wait to have some more company..

Thursday, February 2, 2012

We had a great day today! Aunt Erica and Tosh came to visit. Of course they brought gifts (Lynlee is beyond spoiled!) and yummy food for us too.

We also got the great news that we can stop the Lovenex (sp?) shots. I've been waiting for this day. Its the worst feeling to hold your child down and give them a shot. Lynlee knows it's coming. She starts crying way before it happens. And no matter how many hugs and kisses are given afterwards, its still rough.. On me too!!! To the moms that do it longer than 6 weeks or with their diabetic children my heart aches for you!

We did head upstairs for dinner tonight. We hadn't had a dinner since Sunday. Even though it was tacos (the 3rd time in two weeks) we were just happy to get out and socialize a little. I found myself having a bond with these moms. Not one story is the same, but we are here for the same reason. We all miss our families and our homes but its nice to just have someone to talk too..

Okay write more later. Lynlee is blaring the iPad and I dont' want to get kicked out for disturbing the neighbors!!

Wednesday, February 1, 2012

Complete Randomness

I felt the need to blog this evening even though I have nothing of importance to say.. So here's some complete randomness..

Lynlee is on full feeds as of today. She didn't do to hot at breakfast or lunch but she a half of jar of baby spaghetti and two french fries.

We slept in today for the first time in days. I woke up at 8:45am and knew Lynlee needed her meds asap. She sleeps with her mouth open (just like Ryan) so I just sprinkled the prograf in and went and had my coffee. It doesn't get any better than that!!

Last night we talked on Skype with Ryan. We've tried facetime, tango, and now Skype. Skype has the best quailty by far!!

I've been making a check list out of construction paper every week for Lynlee's meds. I feel like I have to check each one off.

Lynlee has found a love for stickers in the past two days. She's never cared about them before but now they are sticking everywhere.

She's also starting to figure out how to change her voice. She will play with talking to on the iPad and change her voice and words to see if he will copy her. She cracks me up.

Today I was making the bed (after washing all the sheets) and at the last corner I realized they were on inside out. I left them that way. It seemed like way to much energy to change them when I could be spending my time on Pinterest!

I would almost give anything for a glass of wine these days!

I struggle! In the since that I can give my child TPN, meds etc, but I can't put a cardboard box together. I finally gave up and asked the office for duck tape. How sad! lol..

Would it be wrong to turn the AC on?? It's sooo hot in here. I opened the window today in hoping to cool it down? Running AC in February just doesn't seem right.

Speaking of  February, I managed to miss the whole month of January somehow. But that's okay, right? January is kinda blah anyways.

I can't blog without being interrupted 20 plus times because I'm not dancing with Lynlee.. And speaking of the dancing. She now has certain songs she wants to listen too, and I get to figure out by elimination which one it is!  HA