We are getting there!!!

I'm not going to lie yesterday was hard. Maybe the hardest day I've had here. But that was yesterday and we've had a much better day today. We were up bright and early to get labs. We had to get a few repeats from yesterday because of the high and lows. Came back had breakfast got ready for the day and went for a long walk. It was really the first time I've walked for weeks. By the time we were back at the hospital my legs were burning a little (okay maybe a lot.) But we stopped by the grocery store and bought a few things, it was nice just to get out.

Walking back, enjoying the 60 degree weather, I realized something. I should just be thankful to be out walking. Not complaining to just be hanging out here. There are people here that aren't going home anytime soon! There are people here from different countries that would give anything to be told a couple weeks so I need to suck it up...

On Sunday I was freaking out about Lynlee eating. I knew she was on half her normal calories and she should be hungry. She even acted hungry but when she went to eat she would gag and not swallow anything. I debated about calling the hospital on Monday and setting up an OT appointment even though I'm against it. Not that I'm against them but every time Lynlee walks into an out patient room she screams! She is soo afraid of everyone these days I don't think OT could help her if they wanted to.. So I emailed Anna (our old feeding/speech therapist) and she told me that she thought Lynlee could swallow. That she needs to practice. To start with easy, soft foods as if she was 6 months old. That she has low tone and needs to have strength and coordination and she will get that by eating.. So I done what she said and started over.. We stopped giving her toddler food and went back to the "baby food." Our nutritionist in clinic on Monday said to mix applesauce with baby food to help with the taste. The past two days have been much better.And tonight was the best night yet.. I'll never be able to put into words what's is like to see Lynlee set at a table and eat.. It brings tears to my eyes. And for her to fed herself and use a sippy..Well I can barely stand it!

Todays dinner: Before & After...

Lynlee's labs looked better today. Her potassium was a little high but lower so we will repeat on Friday. And then the coordinator told me potatoes are high in potassium.. OOPS!! But at least she enjoyed it.. The results of her ultra sound are back. The blood flow is perfect and everything has healed with the tissue. Praise God!

Tomorrow is our free day. We will have to get a dressing change on Thursday and then I guess a lab on Friday.. But it's not like we have anything else going on. So until then I'm going to sit back and enjoy every moment with my baby!!

I thought when Ryan left today it would be easier than it was last week. I mean we've been through it before, but I was wrong. It was probably hardier. Actually I know it was harder. I think it was because last week I had his mom here. This week no one. I didn't have to pull it together for anyone. So 30 minutes later of me still feeling sorry for myself (that's okay every now and then, right?) I knew I had to pull it together! And I did.  I'm not going to lie, I hate it here by myself. I think it's mainly because I've never been by myself. I moved from living in my house my whole life to  moving in with Ryan. I never had a period to live all alone like most people.

But that's over with. I could whine about this all day (and I might be complaining again tomorrow) but it's all said and done. Lynlee is napping now and when she wakes up we have a date in the playroom followed by washing some towels. We have an exciting life! HA!

I'm still waiting on my phone call from our coordinator with all the details but clinic went well. They stopped two of her medicines (yay!) and we don't go back until next Monday. She did lose 2 pounds over the past two weeks. Most of it was the TPN and the fact when she did go back to her feeds she went to 1/2 calories. And to be honest she had a few pounds to shred. She doesn't NEED all those extra calories now like she did before transplant.

I asked when we could go home, and the response I got was when she can maintain her weight at a full feed. We will be at a full feed Wednesday, and I'm hoping she maintains weight this week. Do you think they'd notice a full diaper and a snowsuit and boots and the next clinic appt for the weight? HAHA. I am getting anxious to go home. It's hard to sit here when they are doing nothing that we can't do there. I do 100 times better in a hospital when I feel like we need to be there not just hanging out. But we will make it.. However, next Monday if all looks good I'm going to be annoying them a lot more!

She did have an ultra sound this afternoon. It went so much better than I had expected. Our favorite tech did it. It's sad we have a favorite tech! But we do. He's awesome and Lynlee always does better for him. I'm hoping to get the results of that when they call about her labs. I can see her labs on line and I already know how everything looks. Her prograf level is a little low, and her potassium is a little high. So I'm waiting for changes on that?

I'll keep ya posted!

Oh and speaking of skinny minny.. here she is....

Things here are uneventful. Really they are.

Yesterday we got labs drew, Lynlees PICC line dressing changed and that was pretty much it during the day. Aunt Janna came to visit in the evening followed by a quick visit with Uncle Kevin. It was so nice having company. We ordered pizza and had a great girls evening in.

This morning has been the first morning with no TPN and to say it's been wonderful doesn't even do it justice. We actually celebrated by taking a quick trip to Target this morning. I wanted to go early before it got crowded. Of course I wiped the cart down with sanitizer and probably used hand sanitizer once or twice (really like 3 or 4) times during the 30 minute visit in. I'm just so afraid of her getting sick right now. Dottie offered to drive us to the mall but Target was all my heart could take right now.

I'm writing in the middle of the day for two main reasons. Lynlee is sleeping and Dottie is out walking.. And two...... Ryan is on his way back up for the weekend. It's unplanned. He was supposed to stay home and work on the addition but a few things fell threw so hes' coming here. I seriously can't wait. I know some of you are thinking it's just been 5 days.. And it has. But it's not just a normal 5 days when you are here..

They are long days. They are very confined days. Lynlee isn't always happy. It's cold and nasty out so we can't go for walks and with it being cold season I'm scared to death to go anywhere. So 5 days feels like weeks here.

And besides Ryan is pretty great. He's always been my strength. Days when I didn't know how to go on he helped me make it through. He takes care of me. And he's the only one in life I feel like I need.. He's definitely the better, stronger half of our marriage..


So incase I'm MIA all weekend.. Things are good here.. We are back to her old feeds. We have clinic on Monday morning followed by an ultra sound to see when we can stop the lovenex (blood thinner) shots.. And that's probably it!

Have a great weekend!

Have I mentioned I'm sooo excited for tomorrow to come??  Just in case I haven't, I can't wait! Tomorrow at noon will hopefully be the last time Lynlee will be on TPN. To say it's the TPN is exhausting is putting it nicely. We chase her around with the backpack for 16 long hours. Yes, we does sleep for most of those, but it's still a long morning.

Starting last night, they started weaning the TPN. That means they did 8 hours TPN and 8 hours D10. The transition over is at 4am. Yes, that was 4am. So all three of us (me, Lynlee and Dottie) were up at 4am for a while. Not long, but long enough that it's hard to get back to sleep. Then Lynlee's prograf is due at 8am.

This morning wasn't pretty here. Lynlee was sooo cranky, whiny, sleepy. She finally laid down before noon and took a 3 hour nap. She really needed it. And I can't tell you how great it is to let her nap for 3 hours and not worry about her ammonia being up. She woke up a new person. In a great mood, ready to play.. How nice!

We took advantage of the afternoon and went to the play room to play. We did some laundry, and then headed back up tonight for the Taco Bar set up by a volunteer group. The Taco bar was good, but the cookies were amazing. We also met a nice family that had a daughter have a double lung and liver transplant. When we actually just listen to people you learn so much.

This might be my favorite picture ever!!!

Lynlee and Momma playing..

We have an early day tomorrow. We don't have clinic but lab work at 8am.

Lynlee is getting so attached to mommaw being here. Dottie's phone was dead and Lynlee had to go sit by her! haha ..

And just another picture that makes me smile..

I had all intentions to blog last night. I really did. However, Lynlee didn't have intentions to sleep. She was up until after 10pm. So after we got her down I was ready for bed myself.

Yesterday was a big day for us. We had clinic at 9am. Everything looked good. We are switching from TPN to feeds again on Thursday. I can't tell you how happy I am about this. I hate TPN. I hate that we have to chase her around with an IV bad for 16 hours a day. So Thursday hurry up and come!!!

We actually don't have clinic on Thursday. We do have to go get a prograf level (because her level as a very low) and that's it.

Yesterday at 4pm we went to see Lynlee's old liver. It was very very neat! I know that's a weird way to describe it, but I don't know how else too. We got to take pictures. I'll spare you the pictures in case any of you don't want to see. We were able to touch it. There was no visible damage that we could see since it's all "chemical." They also had another 2 years old liver there and a 9 year olds to compare them too.
I'm glad we said we'd look at it.

Ryan went home yesterday. We knew he would have to go home sometime, and were are beyond blessed that he stayed with us this long. Our bedroom addition is far from being finished, and he has to work. I thought I had prepared myself for him to leave, but I was wrong. It was hard. Very hard. Ryan's mom is here for probably the rest of the week to help us transition off the TPN and everything. Thank God for family!!!

That's about it.. We aren't doing a whole lot of anything these days. We hang out a lot, play a lot, eat a lot. LOL.. We go to the playroom all the time.. Here's a few new pics til next time.

Today was a very chill today. We had some company earlier in the day. My grandmas sister and our cousin Kim came to visit!

Then the rest of the day was pretty low key. We tried to get Lynlee to drink all day. We went to the cafeteria and got some sweet tea and was shocked when she asked for some. We put it in her sippy cup and she loved it. She is certainly her daddy's child. I'm not sure how well the nutritionist is going to like this, but hey at least she's drinking.

Also before meds tonight we gave her a push-up. We also picked up some treats in the cafeteria. I had to push it up for her 3 times! YAY!!!

And the good thing about TPN (her IV nutrition) is that we have no Gtube feeds, which means we can wear two piece pajamas!! It's the small things that make us smile..

And who doesn't love riding in a box? I know it's random but I though I'd share.Some of our afternoon fun!

Tomorrow would have made 14 days since I've walked out of the hospital. 14 days since I've had fresh air. So today I went to Target. I almost forgot what it was like to drive. I haven't drove in over a month. I can't even remember the last time I got behind the wheel of a car. And yes, this was my excuse as the nice people of Pittsburgh blew at me (maybe twice!) For the record I'm not used to the lanes and got lost once. I don't understand why this town loves to blow their horn so freaking much!

My goal was to go to Target grab a few things and get lunch from McDonalds. My goal failed. I did make it to Target (barely) and could see McDonalds, but with all the one ways and road blocks I still don't know how to get into it. Oh well. I doubt I needed those fries anyways!

While I went out Ryan and Lynlee went upstairs to the playroom and napped. I think they enjoyed their time together. We are really going to miss Ryan next week as he goes home. Sigh. I know we are beyond blessed that Ryan has been able to be here with us for 4 weeks now. It's nice to work for the family business, to have people understand. We are so fortunate. I don't know what I would have done without him. I don't know how those people from really far away do it or those single moms.

In just two days we have fallen into a routine. We get up give meds. After Lynlee's TPN finishes we are free until 8 when we get the TPN ready again. Ryan and I did it in under 20 minutes tonight. We are making progress and getting more comfortable with what we are doing.

Lynlee's morning meds. It might look like a lot, but I've seen more!

And not the best picture but look at the food on her face! I LOVE IT!!!!

Have a good weekend!