Pictures and more

Alivia and Clippity-Clop (thanks Uncle Andrew)


Triple AAA- Andrew, Alivia and Aaron

Today we had a visit to Hershey. James came with us. That was such a nice treat. It has been a while since he has been able to come with us. Livi got her IV antibiotic (she gets it once a month) and it takes about an hour. In the mean time they got her counts back and realized for the second week in a row her platelets were really low so because of the holiday on Monday they gave her platelets. It all went smoothly. Livi had her normal reactin to benadryl....hyperactivity. We all laugh because it should make her tired but it makes her happy, hyper girl...just like the steriods. The doc examined her and said her lungs sounded crystal clear and her heart sounded great. So even though her WBC's are still climbing (over 125 this week) she is doing really well. We are thankful for that.

Please pray they find a perfect match for her. She has a perfect cord blood match but they would still prefer an adult unrelated donor. But they wont' use one unless it it perfect. Please pray that her heart, lungs, kidneys and liver remain unharmed by the eosinophils. Please pray that the docs can figure out what meds will help shrink her spleen so that it will be easier to remove.

I admit that the spleenectomy is really making me nervous. Not so much the actual removal but the anesthesia that goes along with it. It will be the longest surgery so far and she never comes out of anesthesia well. Usually it affects her lungs and makes her breathing really labored. Pray for wisdom for the anesthesiologist and for the surgeons.

If you go to the friendsofalivia.blogspot.com site to read the medical info could you please leave a comment. If no one is reading it I will stop posting the medical info. Thanks

Tomorrow we head to the Baltimore Aquarium with 2 of James' brothers and maybe Jeremy. I am really excited. I think Livi will really like it.

More Christmas Pictures to come.

December 25th

Merry Christmas Everyone. I hope your day is as great as ours has been. Off to eat some ham. I'll post some photos once I get my new camera all figured out.

Tranfusion...

Yesterday Alivia got her tranfusions. She got both platelets and packed red blood cells. She also recieved IV benadryl when she gets platelets to make sure she doesn't have an allergic reaction. All went smoothly. We arrived at the hospital at 10:20 and got to leave around 4:45. Then the 45 min drive home. We were all tired but glad to be out of the hospital.

Last night we spent a relaxing evening at home with 2 of James' brothers and one of their friends. Thanks for coming over guys. It was a nice quiet evening. This morning we had our Christmas (James, Alivia and I) it was so much fun. Livi really got into opening the presents. I can't wait till Monday so everyone else can see her open gifts. Its so fun. Then we packed up the car (i'm just realizing how much I forgot....gr) and headed to my parents. We have been having a great time with them so far. She's even letting the Uncles carry her around (that's a huge step). My dad just said "Livi and Aaron are missing"...wonder where they are hiding. Gotta join the search....she loves being "found".

I got a new camera so once I figure it out I'll post some new pictures.
Thanks to Marmie for the new Signing time videos...she learned how to say Starfish today. Thanks to Aunt Kathy for the cute kitchen stuff, fairy wings and wand(which she wore all morning), tea set (which we are saving to open in the hospital) and hats.
Thanks to Jim and Jean (Grandmom and Granddad) McClements for the giant Care Bear (it got to ride around in her new shopping cart all morning)

Phewy

Today was not what I expected at all....It was worse. I had told James I knew the WBC's would be up and I thought she might need a RBC tranfusion. I was right on both. I said as long as they stay below 100 I'll be okay...Well they went to 103.....grrr. And no idea why.

We arrived at clinic, gave the nurses their Christmas present and got accessed. Only the port didn't want to give blood. This has happened before. Sometimes its just positional and all we need to do is get her to look up or lay down or move her arm. But nothing was working this time. So they put in TPA (drain-0 for the port) to de-gunk the tubes. Sometimes it works right away or in our case it took 2 hours. So we went to lunch (nice to see you C, K, X and B) and went back to clinic. Finally it worked and the blood went to clinic. It was after 1 by this time. We did whatever we could to keep a sleepy Livi entertained and then got into an exam room to see the Doc. Still our counts weren't back from the lab. Finally they came back and we found out all of them were bad.
WBC's 103 (they were 24 last week)
RBC 7.7 (our doc wants them above 8)
platelet's 27 (57 last week)
By this time though it was too late for a tranfusion so we have to go back tomorrow for both. That is 4 hours of tranfusion. But at least we know what to expect and can wear our comfy clothes. Not the Christmas present we wanted. We finally got home around 4:30

I am tempted to think why couldn't we have a Christmas miracle. But then I realize we already have it...we aren't in the hospital for Christmas. How easily I forget that we were supposed to spend the holiday's in the hospital. So I'm choosing to be thankful instead of sad. And anyway if I start crying now I may never stop.

We had our family Christmas with James' side of the family. It was very nice (we were late since we got home so late). Dinner was great (thanks Cynthia) and we had fun giving gifts and watching Alivia open hers. She is so deliberate. Ever last bit of paper has to be off the package and then she can look at the present. So funny. We also took another, more organized family photo. I'm excited to see how they turn out.

I need to go to bed. My eyes are getting blurry and we have another long day tomorrow.

Please pray that Alivia's spleen doesn't get bigger. It already has a bit and the spleenectamy is definetly back on the table. Pray that the tranfusion gets the counts back up. Pray that the Gleevac starts to work again. Pray that she is healed. Pray a special blessing on the nurses and our Doc. They take such good care of us.

Birthday dinner and pictures

I was getting ready to go out for my birthday dinner and Alivia wanted to join in...she looks like a Who from the movie The Grinch.


Here are the promised pictures of Alivia and her Christmas present from Grandpa and Gigi. She loves getting everyone something to eat. Notice the backpack. This weekend she started wanting to wear it...it holds her baby doll like a baby bjorn. When she first got it she didn't know what to do with it...but now she doesn't want to be without it. (Thanks Mike and Joanne)



I would like to take a moment to answer the question "why didn't I help" with the broken down car. A). I don't ever think it is okay to leave a child unattended in a car...especially on the side of the road B). If my husband (the muscle of the family) was with us we would have stopped so he could push C). I would never recommend a mother with children in the car get out and help a stranded male motorist. It was the car load of able bodied men that not only drove past but cut the van off that made me sad. But thanks for asking. Anonymous comments aren't very helpful. Next time don't forget to sign your name.

Happy Birthday

to me. Today has been a great birthday so far. In fact it was a great birthday weekend too. I got to have a night out with my girls on Friday, spent Saturday with my parents and James and James and I went out to a graduation party on Saturday night (Congrats Bekah!!). Then Sunday Erin and I baked more cookies than should be legally allowed and had our Christmas with Erin (love you!). James ventured out to the mall Sunday (brave boy!) and got some shopping done and Livi took a nap till her uncles showed up. The weekend was busy and filled with fun. Livi got her first Christmas present...I will post a picture of it later. A huge thanks to Gigi and Grandpa..she loves it so much. Here is a shot of her dressed to play with it....


Last night James, Alivia, Uncle Will and I made this beautiful gingerbread house. It was a hilarious experience...mainly because I didn't read the instructions (quite laughing Dad) and so the roof didn't dry and was constantly slipping off. We finally got the contractor (James) to rig up some supports and all is well.

Today has been a great birthday so far. We had April , Samual and Grace over to decorate sugar cookies then all went to lunch at Olive Garden with Leslie, Eden and Aksel. I think the server had a heart attack when she saw 2 high chairs, 3 booster seats and 3 normal chairs. But the kids did great and left the floor with no food on it. We really wanted to not be a headache for the server (especially since the 3 adults had all worked in food service before and know how hard it is when parents leave a table a mess). Tonight James is taking Alivia and I out to dinner. Should be a great evening.
I started doing my next favorite thing for Christmas...wrapping presents. Oh I love it. There are a ton under our tree already. I am putting all the gifts that we got for others under the tree and then we'll hand them out as we get closer to Christmas. Then the night before our Christmas we'll put out all the ones for our family. We will have Christmas with the Haughery's Thursday, our Christmas Saturday and then with my family on Monday. That is a lot of Christmas.

On a sad note...I was the saddest thing today. We were going out to lunch and saw a van broken down in the middle of the road. A man was trying to push it out of the way. Instead of helping him out people were rushing to pass him and cut him off. I just wished I could have helped in some way. When did we all stop thinking of others? When did we forget what Christmas is really about? Why is everyone so focused on themselves and so unawared of those around them? I pray I can teach Alivia to see others and care enough to help out. We are blessed with so much and there are so many that have so little. Don't forget to look around this year and be thankful for all you have.

Thanks to all the people who have sent Christmas cards. I have them all hanging in our doorway. Thanks to my aunts and uncles for the way to generous gifts...you all overwhelm me with your love and I am so thankful to be a part of this family! Thanks to Leslie and April (and the kids) for a great birthday morning. Thanks to all my girls for singing your hearts out the other night. I love you guys so much.

Counts

We were out of the hospital by noon today. Amazing. I haven't been outside on a Thursday before noon in 8 months. That was nice. She did very well with her x-ray...only a little crying towards the end..but who wouldn't cry? We had a nice lunch and headed home. They called us with counts and they weren't the best. Not the worst either. Everything went the wrong direction. Only platelets stayed stable. Funny how easy it is to get so discouraged. But I am trying to focus on the positive. I knew in the back of my mind going into today that her WBC's were going to be up. Not sure why but I just had my suspisions. They were 23.2 and here Hemaglobin (reds) were down to 8.7 which means she is anemic. Pray that we don't have to go back in before next Thursday. For now we are happy to be home and ready for a visit from Grandpa and Gigi this weekend.

Thanks to Denise and Lisa for the toys for the kids. They were so excited and said it was perfect timing cause the treasure box was running low. So thanks.

Another Thursday

Today is another visit to the Hershey Medical Center. It is supposed to be a rather average, easy visit. She will be getting a chest x-ray so please pray that her lungs are clear and that she doesn't scream too much. The more she screams the less likely they are to get the x-ray the first time and so they have to do it over and over.

Honestly I get very nervous before visits. And I find that I start to rely on what the docs are going to say and not on God. I let my mind think of all the things that could go wrong. Please pray for peace for me.

Livi has been doing a bit better with getting to sleep. She still is getting up a bunch at night. But at least getting her to sleep isn't taking over an hour anymore. She is a quick learner and caught on to the going to sleep fast thing again. Good girl.

If you are looking for a charitable thing to do this Christmas consider getting brand-new hats, glove and scarves of any size for the HMC clinic. They decorate a tree in the lobby with the hats,gloves and scarves then donate them to families that need them this winter. If you want to contribute get them to me before next Thursday.

Normal

We had a very normal weekend. Got a bunch of Christmas shopping done...which is fun but also sad. I love the getting ready for Christmas. The cards, the shopping, the gift wrapping, baking, decorating. I love it all. When I get another thing on my list done it means its one step closer to being another year to Christmas. Oh well. This will be a great Christmas. Alivia will really get into the gift opening this year and we can read her the Christmas story (and she'll actually sit still and listen). Lately she's been getting into books and I love it. After naps we crawl into my bed and read books together. I am so amazed that I get to share my life with this little girl. Each day she is getting bigger and bigger. She does new things all the time. I am constantly shocked by the things she knows.

Our latest drama is a completely normal drama that all moms experience at one point or another. Alivia will not go to bed. It took almost 2 hours to get her to sleep today. I think that she might be getting teeth so I got out the oralgel.Pray for her to fall asleep on her own. We are trying to teach her. She did it for a while, then the hospital and we get start all over. Oh well. I like having "normal" struggles. They are such a relief.

Thanks for all the continued prayers, to Dan and Debbi Van Horn for the note and cute lamb, to the Phillis Deitman, IDella, Nacy Lern, Patty Rankin, Louann Miller, Mildred Bash and Yvonne Learn for the card and gift, the Fry Family, Wayne, Sally, Shawn and Heather Herr and Lois Hostetter for the advent peices. Thanks.

Today went....

GREAT! Alivia's counts were good. Reds still normal, platelets rising and WBC's.....drumroll please.....normal! 14 thousand! That is normal for the very first time in 8 months. I couldn't even believe it. No wonder she's been so happy lately she must feel so good. She grew to 30 inches and weighs 23 lb 3 oz. That is great for her. She was 29 and 1/4 inches for 5 months. Her body is finally getting to do all the things that its supposed to do. AMAZING.

We talked to our transplant doc today. She said that the first 3 people they requested to match didn't "pan out" so they are requesting 3 more. Not paning out could mean it didn't match, the person couldn't be found or that they didn't want to donate anymore. But they have others to try so we are still praying for a perfect match. If no adult match is found they will use a cord blood donor which they have a perfect match already. And the doc said we have time to look for a perfect match..

AND....another drumroll please....she said that if things continue like they are going we won't have to have the spleen removed! Oh I pray pray pray that is the truth. Skipping surgery would be so amazing. One less thing for our girl to go through.

Please pray for continued good news. Pray for the amazing shrinking spleen to continue to shrink, platelets to become normal and other counts to STAY normal.

Thanks to Pam and the Frye family from Safe Harbor U.M. Church for the card, stickers and magnets.

It's Christmas card writing time. Better go.

This weekend

Friday night was the coffee house at the Mill. It was very nice and well attended. We had a great time catching up with some friends and hearing some great acts. There was a family who all play together (6 kids and the parents). It was Irish music and was amazing. Definetly a highlight. Thanks to everyone who came and made it a successful evening. And a huge thanks to the greatest grandparents of all time for babysitting Alivia. She, of course, loved it.

Saturday we went into the city to visit some shops that were doing a fund raiser for Alivia. Actually all the shops in the city were doing "Shop for a cause" and three of them picked Alivia as their cause. Thanks so much. Then we had a great lunch at Character's Pub (my favorite place to eat). They are so amazingly kind. They all wear Alivia bracelets, sell them to customers and take great care of us when we're there. We always walk away amazed by their care. That evening we went to DipCo with Andy, Sonya and Christian. Alivia got to stay with her two favorite playmates again. We laughed so much. It was a really good time. Thanks guys.

Sunday James went to church and my parents and I went to get some Christmas shopping done then meet up with James for lunch. After lunch my parents hit the road and we went home to meet up with John, Will (James' brothers) and Jeremy (Will's best friend). We had a great afternoon. All in all a good, fun, relaxing weekend.

Monday night we had the fund raiser at the Conestoga. It was a good time. Lots of our friends from the rugby team where there and some friends from church. Thanks to everyone that came out.

Please pray for Alivia's rash. It is not getting worse and seems to be clearing up but it still is itchy and makes her uncomfortable. She is doing wonderfully otherwise. Such a peach. She is walking more and more, talking (babbling) up a storm and just making us all laugh. I am so blessed to be her mom and get to spend all my time with her. I love her more each day. She said "mama" last night...then just laughed like it was the greatest thing (and like she'd been able to do it for ages and was just waiting for the right moment). I wish I could bottle her cuteness and take it out when I'm feeling blue or give it for Christmas or something.

I posted more health info on the friendsofalivia blog. Check it out.

Thanks to Dolores Byers, Kathy Booker, and Gregg, Audrey, Megan and Evan Hostetter for the cards. Thanks to Norah and Emma Chase for the advent calendar.

News on the web

Here is the address if you want to see the news cast
http://www.whptv.com/mediacenter/local.aspx?videoId=121215

News

We'll be on the 6 o'clock news tonight. oh my.

This week

Let's start with yesterday. Thursday was the weekly doctors visit. It went really well. We figured out earlier in the week that the rash she had (diaper and otherwise) was from the antibiotic she was taking. So they gave her an IV antibiotic that should cover her for all bacterial infections for a month. Her counts were so good. RBC's remained in the normal range, platelets came up to 57 (still really low but good enough for no transfusion and the highest they've been in a while) and her WBC's were 18!! that is the lowest they have been in ages. I was shocked. So good. Yesterday was day 14 after the chicken pox exposure. So if nothing pops up between then and day 18 we should be clear. That would be nice. She does have a rash but it looks a lot like the one from last weekend and not like chicken pox. So that should be okay. Pray that it goes away though. She is bothered by it mainly at night.

We finished decorating the tree and Livi loves it. We put the ones that won't break down low and she is having a blast rearranging them. It's so cute. Livi's new trick, by the way, is WALKING!! She is doing it all the time now. Every once in a while she gets a little unsteady but most of the time she is steady and so proud of herself. It is so cute. She looks so little. I just love to watch her walk.

We got to have dessert with James' grandparents yesterday. Mamaux and Nick were so sweet to have us over and Livi loved playing at their house and eating the chocolate mousse.She was bouncing off the walls from all the chocolate. Then Uncle Will (James' youngest brother) stopped by and watched the Office with us. After he helped James finish the outside decorations. I love the way it looks. Anyone going to the Mill tonight for the coffee house will get to see it (its right on the way).

Today we did another interview for the news. It will be on Channel 21 (CBS) tonight. See if you can find it. I'll know the time later. There is a fundraiser this Monday at the Conestoga and the owner set up the interview. I'm not a huge fan of being on the news but its for Alivia so its worth it.

I think that is the whole update for now. When I find out what time we're on the news I'll let everyone know. I think the channel is a Harrisburg affiliate so a lot of you might be able to see it.

Thanks to Dan and Julie for dinner last nigth (even in the midst of moving they are such servants. You guys are amazing). Thanks to Margaret ODell for the sweet note and for thinking of us.

See you at the Mill tonight. Don't forget to continue to check friendsofalivia.blogspot.com for all medical educational material and fund raiser updates. Thanks