who needs sleep?

The answer is ME and Alivia. For some reason she has always been against sleep (James says she's just like her mommy). I am trying to work out a schedule that doesn't have her awake for hours without eating. Today she decided to go against that plan. Silly girl its for her own good. So she had a bottle around 6ish and went back to sleep for about 20 min but then woke up with a dirty diaper. I changed her and tried to get her back to sleep but no such luck. So instead we hung out..now you have to understand the chemo schedule to understand how crazy this is. She has to have an empty stomach to take it (at least 2 hours sinc eating) and then has to take the anti-nausea med and wait 30 min, then the chemo and wait an hour then eat. So this morning we had 3 and a half hours to kill before breakfast. By the time we got to eat she was ready for a nap (read CRABBY) and starving. She was so overtired that she only slept for about an hour (probably a little less). So we played and tried not to have any meltdowns (tired baby) and finally she fell back asleep at 1:50. But only slept for an hour again! So I rocked her for a while and she finally feel back asleep about 10 mins ago (its 3:45). I was going to take a nap but now I am not sure if thats a good idea..might feel worse after.


One of the things that the doctor said keeps running through my head. He said that people can live on this chemo for years. I am trying to not think about what that means for our lives but its hard not to.

This evening has been crazy and intense. Livi and I were outside so she could sit in her baby pool around 4 and by 4:45 she was really fussy and just wanted to be held. So I took her inside to get dressed and realized that she felt really hot. So I took her temp and it was 101 (which is the magic number if you hit once you are supposed to call the doc right away) so I called and while I was waiting for the nurse her temp went back down to 100.6. The doctor said to watch her and if it went back to 101 come to the emergency room. Thankfully over the next hour or so it went down to normal. But now we think it might be a tooth. She is chewing on everything and is so tired but when she lays down she always turn her head to the left and she starts to cry like it hurts. So now we have another call into the doc to see if its okay to give tylenol. We were told not to give it if there was a fever since it would mask the fever but now that the fever is gone... Its an odd feeling have to check with someone every move you make with your child.

pray requests...
...good doc visit tomorrow (fast, positive, easy)
...no more fever
...sleep
...no pain from teeth (or the go ahead to give tylenol)
...that she doesn't have to live for years on chemo


Thank you
to Amy Knutsen for the great cookies (for us and the nurses!)
to April Spinetti for the yummy dinner (and so much more...love you)
cards with stickers from
Marmie (you are the most faithful card sender...she loves the one of the dog!)
Gary and Patty Smith (and family)
The Eckman family (thank you Lydia and Ruth)
Joni Cairns
Luke and Christine Smart (thanks for the offer of help if we come to Hopkins. May just take you up on that)
Sara Rankin
and the thoughtful letter from Jim and Jean McClements

If I ever forget to thank someone please except my apologies and I am really trying to get all the thanks up but somedays I loose track. Sorry

Chemo

I'm not sure if all moms are like me but I love the smell of sweaty baby...let me rephrase that I love the smell of sweaty Livi. There is something about her little sweaty head that makes me smile. One of my most favorite times of the day is the early morning bottle. Usually James is gone so I get her and we lay in my bed and she drinks her bottle. We are both only half awake and I can smell her little sweaty head. This morning we had our usually routine but something was different. Her head doesnt' smell the same. Now it has a chemical smell to it. I guess as far as signs of chemo go that isn't too bad but I am mourning the loss of her sweaty baby smell. Just another reminder that things are not normal in our lives.

HOME

We are home. I've realized that getting discharged might be the hardest thing to do in a hospital. Since you are okay and not an emergency anymore it seems you get overlooked. It took forever. We got the IV out around 12:30 and went to lunch to kill time. When we got back our discharge papers were waiting for us. But you have to go over them with the nurse. She came down (Steph is the best) and started going over them and we realized that we only had one of the perscriptions that we needed. So she ran and got the other one writen (which of course took a while) then we went over more papers. In the meantime Alivia had diarrhea (which they are always looking for..but she's had before and it hasn't been a big deal) but there was talking of calling the resident to see what he said. We finally decided to not call but we have to keep watching and see if it continues. We finally got to go and made it outside and Alivia was picking at her bandaid (over the IV site) so I decided to help her take it off. As soon as I did it started to gush blood. We grabbed napkins from the car and ran back up to the 7th floor. They looked at it and said it was because the clot came off when I took the bandaid off. They reapplied the pressure dressing and finally got to leave. Livi fell asleep almost as soon as she got in the car.

We are suppposed to be even more cautious about germs now that she is taking the chemo. So if you are going to be around us and have ANY kind of infection, flu, cold etc we should not hang out till your better. Also if your kids get immunizations we can't hang out for 3 days after that. If you have chickenpox, measles, shingles or your kids develop them 24-48 hours after we hang out call us immediately cause we'll have to go back to the hospital. (Like I didn't have enough to worry about) And finally no touching unless you have washed with antibacterial soap (that doesn't mean you washed 4 hours ago..that means more like 5 mins ago.) thanks everyone.


Oh yea the reason we got discharged...her white cells dropped to 91!! Thats more than half in a day. WOW. Hopefully that will continue to happen.


thanks for today

cards with stickers from Angie Stolzfus and Lori Randolph and the super pack of stickers from Grande Aunt Lisa
A really cute card from Ruth, Lydia and Paul Eckman (and their parents)
a card from Covenant Fellowships pastoral team (thanks for your prayers)
and a cute backpack with doll from Uncle Mike and Aunt Joanne (Lisa is calling herself Grande Aunt so you can too if you want....she keeps trying to brush the dolls hair..very cute.)

Sunday Morning

As I type Livi is getting a finger stick to get her CBC for today. I can hear her crying. I hate when she has to give blood. My parents are in with her and they said I could duck out. I am not stronge when it comes to blood draws on her. On me or other adults I like to watch but on her I just start to cry and make the whole situation worse. This way I get to come in at the end and be the hero.

The reason we are doing a blood draw so early is because they are preparing us to go home!!!! She is doing so well and as long as thig CBC comes back good we are out of here.

I'm going to go see if they are done. I'll write more later.

10:45...already?!

I'm telling you hospital time is so weird. I thought it was earlier..I haven't even had breakfast yet. Might skip that meal today (healthy people everywhere are gasping!)

Last night was an adventure. We got Alivia to bed around 9 and she woke up a few times crying between then and 11 but we got her back to sleep. Then I went to bed around 11:15 and fell right asleep. Well the nurse came to check temp only around 11:40 and that was it. She wouldn't go back to sleep and was pointing to the door and screaming. So I gave up and decided to wake my mom up and walk the halls. We walked down to the play room and got a little green car (I can push her in it...I'll have to put a picture up of her in one..she loves it) and did another lap. Then we decided to sit by the play room and just push her back and forth. We're sitting there and I look down the hall and who's coming towards us....My Dad! He is staying with our friends the Bookers (thanks guys!). He got to their house and realized that he had her Balmex in his pocket. Not a big deal expect that here in hospital land they have to get it from the pharmacy and it takes forever and she has a soar bottom already. So he decided to head back over. So we sent mom off to bed (so she could take the AM shift) and played with the train table. Livi was lauging and happy as can be. So funny since it was 1 AM. She's like her mom...rather be up late and sleep in (except without the sleeping in part!). We finally got to bed around 1:20 and she only got up once between then and 7:30. Thankfully my mom came and got her and let me sleep till 9 something. Notice a running theme....my parents are lifesavers...

She is taking a morning nap. Gigi is sleeping in the room with her. Pap-pap is going to practice his guitar and take a nap in the car and I'm going to the lounge to relax and read a magazine and have some devotions. Maybe we'll eat lunch when Livi wakes up. By the way...no throwing up today so it was from the steroid. She is tolerating the chemo well. Maybe we'll get to go home tomorrow.

pray for...
...restful morning for all
...My James (he's getting the cold that Livi and I had earlier this week and its no fun! and he's working right now so he can take Monday off and be with us! Such a great hubby)
...a good CBC so we can go home tomorrow.

Friday night...I think

Once again I have lost all track of time and days. It was after 3 when we had lunch and after 7:30 when we had dinner. Alivia did really well the rest of the day. No more throw up so that was a relief. They really think that it was the steriod that made her sick. We won't be taking it anymore. They say that the steriod can make you have crazy mood swings and we saw a glimpse of that today. She had some moments when she was really really really mad/upset and just couldn't be consoled and there was no reason that we could see (ie things that hurt). But the rest of the day she was chatty kathy..babbling a mile a minute and laughing at everything. She found a new game that she loves...she pulls up(with some help since she can only use one arm cause of the IV which they have wrapped in about 20 layers of gauze to keep her from picking at it...we call it the club) then quickly sits back down. She thinks this is a blast. Gets a little tiring for mommy (who is the only one she wants to help her stand right now) but it makes her so happy and it makes the time go by so we give in.

Pray for...
...sleep (as always)
...no throw up tomorrow (that will mean it was the steriod and not the chemo!)
...a good CBC tomorrow (didn't do one today..but if tomorrows goes well we probably will go home Sunday)
...continued good mood for the girl.

thanks for today...
cookies and other goodies from Kathy Booker (Superwomen) and a great visit with you and the kiddo's (Livi loves seeing kids!)
Panera gift card and Big Bird from James and Pauline Williams (food other than cafeteria food will be such a treat)
Lyndon and Jamie Sentz and Cynthia for the visits tonight. We love seeing friendly faces.

till tomorrow

1/2 Marathon

James' cousin Margot Cole is running a half marathon in a few months in honor of Alivia. She is getting sponsors and all the proceeds go to Alivia. If you are interested in sponsoring her just send her an e-mail with Alivia's name as the subject and she will send you the info. Her address is margotcole@bellsouth.net

I want to thank her again for coming up with this idea. What a blessing it is to us. Thanks Margot. I couldn't run a mile let alone a 1/2 marathon. I am truly amazed when anyone can. Make sure you get a photo so I can give it to Alivia and tell her the story when she is older!

chemo begins

We had our first treatment this morning. It went well. Its just an oral med so I can give it to her. She took it easily and laughed when it was done. She has always been really good about taking medicine. We had to wait an hour before she ate (empty belly for this medicine) and then we went to breakfast. She wasn't eating very much so we tried a donut (bit hit) then we can up and gave her a bottle. Then she had her steriods and some medicine for her stomach. About half an hour later she started to throw up. I was trying to get her to take a nap at the time. So she got me really good. And her blankie (if you know her you know her serious love and attachment to a specific blankie...no sleeping unless she has it). So I paged the nurse, we got her undressed, I changed, she got a sponge bath, we washed blankie in the shower (the washer is broken here and there is no way we could take the time to send it to someones house to be washed!) and got it quickly in the dryer. She had a blast taking her sponge bath and was completely unfazed by the throwing up. They don't know if it was the chemo, the steriod, the donut or the combo of all. So we are stopping the steriod and no more donuts for a bit. Hopefully that will fix the problem.

She is napping now. (Woke up at 7:30 didn't go for a nap till 11:15..that is a really long time in 1 year old land). So we are hopeful this will be a really good nap. She has been happy and silly all day. Her Pap-pap (my dad) and Gigi are a great source of entertainment and she loves when they walk in the room.

Last night was okay. We were up about 10 or 12 times. But they were pretty short so that was nice. The nurses only came in 3 times. The other times she would just wake up scared and I just had to hold her for a second and she would calm down. (Not like the night you slept at our house Jamie....)So even though the sleep was interrupted there was still sleep. I had a really hard time getting to sleep last night. I am not sure why (could be the stress, the wooden slab I call a bed, the freezing air blowing on my face, the screaming child next door, the constant sound of doors opening and closing, or the bright glow of the IV machine) but I had a hard time. So I'm not taking a nap today in hopes that I will be too tired to be kept awake tonight. Hopefully my plan won't backfire. Funny thing about hospital rooms...the heat is impossible to truly control. If you set it at 68 you might freeze to death, 70 and you have a sauna, 69 isn't too warm but not that cold. You can almost bear it if you have 3 blankets, sweatpants and a sweatshirt. I forgot about that added treat from the last time I was here. Oh well...hopefully we'll be home soon so it won't matter. Just makes me love my bed more.

We are probably going home Monday although he said if everything is "perfect" we might get to go home Sunday. So there is something to pray for. Alivia and I would love to spend Monday at home with my brothers, parents and James (he's taking the day off...whoo hoo). Maybe we could even cook out and hit a park. Oh the little pleasures in life. Things that before this all started I took for granted. I sure am learning to appreciate every single second (even the ones where I'm being puked on!) wouldn't trade it for the world.

pray that...
...we get to go home Sunday
...the blood draw later today shows good results
...that it was the steriod that made her sick not the chemo
...that she doesn't need a blood transfusion or not more than 1 or 2 (we have two people who have donated so I wouldn't mind if she used that blood...thanks Cynthia and Keira!)
...that tonights sleep is better
...that she continues to be happy girl
...safe travel for Andrew and Aaron (to Lancaster) and John, Chris and Will (to Louisville)

Thanks for today
Again the nursing staff is blowing us away with there care and attentiveness. We are so blessed by them. So far Emily, Kim and Steph have given us their full attention. We have yet to meet a nurse we didn't love. Thanks ladies for doing your job above and beyond the job requirement.
The Corey Booker Band (that means you Kathy, Xander and Bryn) for letting my dad crash and opening your home time and again. Maybe one day he'll meet the kids when he stays.

Thanks for all the comments. They easy my worried heart.

In the Hospital

Here is the CBC for today.

WBC- 178.8 (up a bit from last week obviously)
Hgb- 8.3
Hct- 27.0
RBC- 3.09
Plts- 81

We started on steriods and fluids tonight and we will start the Hydroxyurea tomorrow. They don't want to start it during the night just in case she has a bad reaction. She did a really good job today. Even let the doctors listen to her heart. Usually she freaks the second anyone gets near her. Guess she's getting used to it all...not sure thats a good thing.

We are in the very first room on the hall (7251...I think) its not bad but a bit loud. We did get a glider so that is nice. Hopefully everyone will settle down and we can get some rest tonight. Tomorrow is a big day.

Pray that
...we all get some sleep
...that she reacts well to the chemo tomorrow
...that the numbers start to get more normal

they don't know if the chemo will fix the problem or if it will just regulate. They say that a person can live on this med for a long time and just maintain. I guess that at some point it can become an Acute leukemia. Pray that doesn't happen. I have to go to bed. My brain is starting to freeze up.

Thanks for today
My parents for being here all day and bringing such fun toys
James for working so hard
Bill, Cynthia, John and Chris for visiting
Cards from Rachel (I laughed so hard.. I sure miss you girl...I could use a good laugh)
Lynn and Denny Templeton (the card and gift...so sweet)
Rod and Ellen Ruddock for the card.

thanks for your prayers. They mean so much.

Hospital here we come

We are leaving for the hospital in 10 min but I wanted to quickly write the normal levels for blood cells so that you can follow along with us and see how the drugs work.

Hemaglobin (Hgb) 11-14 (our last reading 8.0)
Hematocrit (Hct) 32-44 (our last reading 25.3)
White Blood Cells (WBC) 6-11 (thousand) (our last reading 138.7)
Red Blood Cells (RBC) 4.0-5.8 (our last reading 2.97)
Plateletes (PHs) 140-340 (our last reading 126)

so you can see we are out of wack. Hopefully the numbers will start to come back into line. That is the goal. I am going to try to list the CBC for each day.

Take care.

thanks for today...
To Leslie and Beth for faithfully commenting and reminding me that someone is still out there reading. You girls bless me again and again. Love you tons.

Cold

Now I have a cold. Probably the best treatment will be sleeping on a foam pad in the hospital tomorrow night. So not the best treatment but maybe I'll be better by then. We had a busy day...through the course of which I realized that Alivia has the same cold as me. I gave her some medicine and she is sleeping really well. Hopefully a good night sleep will help us all and prepare us for tomorrow.

Please pray for quick healing from our colds, a nice room in the hospital (little nervous about that) and taht we won't have to stay long in the hospital.

Thanks for today
Cards from Benjamin Kim (so impressed with his penmanship and only 15 months old) thansk for the stickers too.
Marcella Giballino (you are so sweet thanks!!)
Aunt Kathy (Livi waved it around for a bit)
Bob and Bonnie Bell (from my parents church)
and a sweet drawing from Keaton Bunting...Livi chewed on the corner so she must have really liked it. Thank you so much. (sorry I was half asleep when you dropped it off)

cards 2

If you are sending a card...send it to our house since we won't be in the hospital that long and we won't even know our room number till Thursday afternoon so by the time you mail something it will get there after we leave. James will be home and coming up to the hospital each night so he will bring mail. Thanks so much.

Cards

Just wanted to say if anyone is thinking of sending a card Livi would love stickers even more than a card. She recently got some and it was tons of fun for her to stick them to a container we have. I am going to take a book with me to the hospital that she can stick them in. She loves it... and goes through a sheet pretty quickly. So we could use a bunch. Thanks for that. And dont' feel like you have to.

Please pray for my friend Briana (and family) today as her son Judah is having brain surgery to have a shunt placed (poor little guy). Obviously this is a hard time for their family but they are resting on the Lord and your prayers would be much appreciated.

Update

The last few days have been a bit rough. Alivia is getting a tooth (on the top I think) and is so crabby. Today wasn't as bad as yesterday because I started giving her tylenol for the pain (didn't realize that was why she was so crabby yesterday... oopps). Yesterday we hung out at home and did the laundry (it's been a while) and today we went to the park with Leslie (Eden and Aksel) and April (Samual and Grace). Had a great walk and played at the park. Tonight we went to Noah's t-ball game (the little boy I used to nanny). Can I tell you that 4 year olds playing any kind of organized sports is the cutest thing. I loved seeing him and Grant and Livi was entertained too.

Yesterday James found out that one of the guys that works for him got in a really bad car accident. He and his girlfriend and her two kids were traveling home from a wedding when they were broad sided by an SUV. One of the kids was killed, the other injured, the girlfriend injured (but will be released from the hospital hopefully tomorrow) and James' employee is in a coma. He punctured both lungs, his liver failed and he has a spine fracture. They aren't sure if he will make it or not. He is a nice guy and has been a loyal employee for a few years. We are very worried about him and praying he will recover quickly.

We got a message from the doctor. We are going to be admitted on Thursday to start treatments. We are going to be in for a few days. They just want to start the treatments with us in the hospital so they can watch and see how she reacts to the medicine (since they don't usually use them on someone her age).

I guess I'm numb. I want to get things going but at the same time and scared of the side affects. I want her to be better but I also dont' want her to have to get worse first.



Pray for
*a great day tomorrow
*good reactions to all the medicine
*no side affects (now or down the road)
*sleep when we are home and in the hospital
*wisdom for the doctors
*James' employee to heal quickly

thanks for today
suprise dessert from Dan and Julie (and Jude) so sweet
Margot Cole for running the half marathon in Alivia's name. That is so amazing!

We are all a bit overtired here. Hopefully tomorrow will be a peaceful day.

Grumbly

I have a grumbling heart. Lets just get it out there. I was just complaining to James how I miss all the activities we used to do with our friends and how I feel "out of it". I keep wishing for my "normal" life. So I get back home from church (which we now leave at break because she can't go into class because of germs and she is to noisy to be in the message....) and I sit at my computer and glance at one of the quote I have hanging up...it fits this moment perfectly.

"The great thing, if one can, is to stop regarding all the unpleasent things as interruptions of one's "own" or "real" life. The truth is of course that what one calls the interruptions are precisely one's real life- the life God is sending one day by day; what one calls ones "real life" is a phantom of ones own imagination. This is what I see at moements of insight but it's hard to remember it all the time." (C.S. Lewis)

So I am sorry for my grumbling and complaining. I am seeking contentment in this time. Easy to say....not so easy to have.

News

First of all...last night around 10:30 we had a 2 lb poop. YEAH WHO!!! James and I were at a friends for a birthday party and my parents we good enough to dispose of the toxic waste. It stunk up the whole second floor but what do you expect after 5 days of nothing.

Second we got a call from the doctor today about the test results. Both the Liver and Lymph Node showed nothing new (just a lot of eosinaphils) and the liver showed that there is no organ destruction. The Bone Marrow Biopsy and Aspirate showed nothing new either. Which proves that this is not an acute leukemia (meaning lots of blast cells). They said this means that there are not "bad" cells just too many good cells. So unofficially we are being diagnosised as having Hyper Eosinaphil Syndrom/ Chronic Eosinaphilic Leukemia (chronic meaning that it could smoulder for a while and then take off into full blown leukemia) Either way not truly a leukemia (yet). The test for JMML came back negative! (thank God). So we will be starting treatment in the next few weeks. He is looking at 2 different kinds of chemo (both oral and fairly benign drugs...still chemo though) or another drug that is given by shot. The 3rd option (alpha interferon) has more reactions (fever, chills, headache, nausea, pain). Regardless of the treatment we will be admitted to the hospital for the first few days to see how she responds. Our doctor also wants us to go see a world renown specialist at Hopkins named Robert Arceci. He is already aware of Alivia and will be presenting her case in front of 30 doctors this week for discussion (they meet once a week and discuss cases and he asked if he could present Alivia so our Doctor is sending all the info to him Monday). We will either get an appointment with him soon (he frequently travels and is very highly sought after) or in a month. If it is in a month then we will start treatment before he sees her since he will have all of her slides and test results. Currently we are not considering a bone marrow transplant but that is still a possibility. Our DR. wants to try treatment first and see if it cures it. If treatment just maintains but the white cells take off when she stops treatment then we will consider a transplant. Our Doctor said that her white cells should go down quickly and her liver and spleen should get smaller once we start treatment.

It felt like a really good phone call. We were so excited that the JMML test (also known to some as the Georgia) came back negative. We know it is still going to be hard (especially treatment) and there are still big hills ahead but this is encouraging to us. They still have never seen this in a child this young and are going to have to figure out how to make the drugs liquid so she can take them. But it would be nice to have oral chemo instead of IV. That means no port!!

Pray for...
...an appointment with Dr. Arceci soon (the sooner the better)
...wisdom for the people figuring out how to make the drugs liquid
...correct doses of the meds
...a treatment that won't have terrible side affects (now or 10 yrs from now)
...total remission
...patience for James and I (and our families) while we wait to see what the treatment will be, how long we'll be in the hospital, when we'll meet Dr. Arceci, whether or not the treatment will work.

Thanks for today
Cute toy and note from Tonya Walls and family
Cute book, toy and outfit from Claudia Curry
Lots of fun with my parents today and babysitting last night.
All the fun we had last night with Jeff, Leslie, Vic, April, Sonya and Julie...you guys kept our minds off Livi for an evening and made us laugh. We needed that. Love you guys.

Round Table

At some point today Alivia's oncologist will be sitting down with other doctors (oncologists, hematologists and patholigists) to discuss Alivia's condition. Supposedly they will have some preliminary results back from Tuesday's biopsies that will help them get one step closer to a diagnosis. We probably won't hear the results of this discussion or of any of the tests till our next doctors visit (Thursday). Its good to know that a lot of doctors will be working together to try to figure out what is going on.

Pray for wisdom for the doctors, favorable test results and a good plan of action.
oh .....and some poop for Livi (still don't have any). And a safe trip here for my dad (can't wait to see you Pap Pap)

Last night was worse than the night before. She woke up with burps, gas, to eat, because of pain and just to be awake with me. Silly girl. I got to sleep till 9 (thanks mom) so I got about 4 hours. Good thing I run well on very little sleep. Otherwise this would all be much worse. Maybe today will be better. Trying to get her back on a more normal schedule today. And that might help with night time. She is trying to stand up more. That is really great. It seems like her foot isn't hurting anymore.

I'm sure I'll write again later. Have a great Friday

Uneventful

Today was a day to relax and try to get back to real life. Alivia is doing well and we are slowly increasing the time between Codine doses. We did 5 hours and are trying to make it to 6 before the next dose. Just trying to figure out how much pain she is in, how best to manage it and when to quit giving the medicine. We are all for regulation of the pain but would be happy to stop the meds if she isn't in pain. So far so good. Right now I am cooking dinner, James is showering, and Gigi and Livi are on a walk. She sure does love her Gigi!

Our main concern today was lack of poop. Another day without any. A little gas (can't believe I'm even writing this all out) but nothing else. She isn't eating completely normally so that might add to it but the Codine can cause constipation too. So we got a prescription for some medicine that will hopefully get things kick started. She hated it and didn't want to take it.

We got to go to the park today with some of my girlfriends and their kids. Livi loved seeing Owen, Grace, Samuel, Hannah, Spencer and Cole. And I loved seeing Amy, April, Tina and denies (if you are trying to do the math..There were 2 sets of twins!). We laughed and talked and went on the slide...Tina did you get a turn? Then it started to get really windy and we all made mad dashes for our cars (laughing the whole way!!!). It was great. Thanks for thinking of it Amy.

Thanks for today...
My mom for doing so much for us (running errands, letting me sleep after a long night, taking Livi for a walk, helping in so many ways I can't even list them)
Amy for thinking of a play date and getting it all set up
Super sweet card from Moriah Freeman (I am stunned by your maturity...I was not like you when I was your age...I hope someday Alivia cares for others as you do.)
My other girls for treating me the same as always and not acting like I'm different cause Livi is sick
Denise for making us some chili (to freeze) even though she has twins and a million other things to do.
James for working so hard and then coming home and mowing the grass....you, my love, are the best!
I always want to thank all the girls under the age of 20 who diligently comment and write to us. It means so much that you girls take the time to care when most people your age are just concerned with themselves. It blesses us so much. Thank you Beth A., Moriah F. and Christi B.

Pray for....
-a better night sleep. Still getting up a lot. She is still scared I think
-poop (especially so we don't have to take the gross medicine today)
-wisdom to know how and when to stop giving the codine
-quick healing of all incisions
-also pray for my friend Briana...her son Judah has a lot of medical concerns and is having to have some tough tests done today and may have to stay in the hospital this weekend. He is a trouper and has been through more than I can even imagine and is still a happy little guy. Also pray for his twin Tucker who is having to be separated from his family while all this is going on. (they are almost 2 by the way)

Uneventful

Today was a day to relax and try to get back to real life. Alivia is doing well and we are slowly increasing the time between Codine doses. We did 5 hours and are trying to make it to 6 before the next dose. Just trying to figure out how much pain she is in, how best to manage it and when to quit giving the medicine. We are all for regulation of the pain but would be happy to stop the meds if she isn't in pain. So far so good. Right now I am cooking dinner, James is showering, and Gigi and Livi are on a walk. She sure does love her Gigi!

Our main concern today was lack of poop. Another day without any. A little gas (can't believe I'm even writing this all out) but nothing else. She isn't eating completely normally so that might add to it but the Codine can cause constipation too. So we got a prescription for some medicine that will hopefully get things kick started. She hated it and didn't want to take it.

We got to go to the park today with some of my girlfriends and their kids. Livi loved seeing Owen, Grace, Samuel, Hannah, Spencer and Cole. And I loved seeing Amy, April, Tina and denies (if you are trying to do the math..There were 2 sets of twins!). We laughed and talked and went on the slide...Tina did you get a turn? Then it started to get really windy and we all made mad dashes for our cars (laughing the whole way!!!). It was great. Thanks for thinking of it Amy.

Thanks for today...
My mom for doing so much for us (running errands, letting me sleep after a long night, taking Livi for a walk, helping in so many ways I can't even list them)
Amy for thinking of a play date and getting it all set up
Super sweet card from Moriah Freeman (I am stunned by your maturity...I was not like you when I was your age...I hope someday Alivia cares for others as you do.)
My other girls for treating me the same as always and not acting like I'm different cause Livi is sick
Denise for making us some chili (to freeze) even though she has twins and a million other things to do.
James for working so hard and then coming home and mowing the grass....you, my love, are the best!
I always want to thank all the girls under the age of 20 who diligently comment and write to us. It means so much that you girls take the time to care when most people your age are just concerned with themselves. It blesses us so much. Thank you Beth A., Moriah F. and Christi B.

Pray for....
-a better night sleep. Still getting up a lot. She is still scared I think
-poop (especially so we don't have to take the gross medicine today)
-wisdom to know how and when to stop giving the codine
-quick healing of all incisions
-also pray for my friend Briana...her son Judah has a lot of medical concerns and is having to have some tough tests done today and may have to stay in the hospital this weekend. He is a trouper and has been through more than I can even imagine and is still a happy little guy. Also pray for his twin Tucker who is having to be separated from his family while all this is going on. (they are almost 2 by the way)

We're home

and headed for bed.

My Ways

Wanted to share what I read in "Beside still waters" this morning.....

My Ways Isaiah 55:8

God has not promised to rescue us according to our time schedule. If it appears that your prayers are unanswered, do not dishonour the Lord with unbelief. Waiting in faith is a high form of worship. In some respects, it excels the adoration of the shining ones above.

God delivers His servants in ways that exercise their faith. He would not have them lacking in faith, for faith is the wealth of the heavenly life. He desires that the trial of faith continues until faith grows strong and comes to full assurance. The sycamore fig never ripens into sweetness unless it is bruised; the same is true of faith. Tested believer, God will bring you through, but do not expect Him to bring you through in the way that human reason suggest, for that would no develop your faith.

God works in a mysterious way, his wonders to perform. He plants His footsteps in the sea, and rides upon the storm. You fearful saints, fresh courage take: the clouds you so much dread are big with mercy and shall break in blessings on your head. Judge not the Lord by feeble sense, but trust Him for His grace: Behind a frowning providence Hi hides a smiling face. Blind unbelief is sure to err and scan His work in vain; God is His own interpreter, and He will make it plain.

God has a way of His own. "My thoughts are not your thoughts , nor my ways your ways, says the Lord (Is. 55:8) "stand still and consider the wondrous works of God" (Job 37:14). Obey Him, and that will be far more in accord with your position as a finite creature than that vain attempt to map out a course for your Creator.

Longer night

last night was so long...it feels like 2 or 3 nights. Either a nurse came in or Alivia woke up scared every hour. I was sort of delirious byt the morning. I went and woke my mom up around 6:00 and got to sleep a bit. I'm a bit tired.

If one more person checks Livi.....Seems like someone is in every 15 min. She hates it and gets so upset. She kicked her IV out around 3 but they decided not to put another one in (thank God) and were supposed to be discharged (from a surgical standpoint we are fine to go home) but they transfered us to Hematology/Oncology so that they could run some tests. Our Doc isn't here and the attending that is here isnt' familiar with Alivia's case and so until she gets in touch with our doc we will be hanging out here. I think that the attending thinks this is our first trip to the hospital because she is wanting to start treatment right away to lower the white count. But our Doc knows what the plan is (start treatment next week after they get all the test results back) so he will set her straight.

Pray...
everyone gets on the same page so we can go home.
no more un-needed checks of her surgery sights
sleep for all of us when we do get home.
healing

Long day

We made it through today....but it looks like it could be a long night. Everyone has come to listen to her and check her biopsy sights (enough already....just ask the last doc that was in 5 min ago how it looked. Can't we all confer!) Her white cells are up over 200 but that is to be expected from the surgery (or so they tell me) and they are still waiting on the labs about her plateletts to confirm no internal bleeding. All of her sights seem to have clotted as planned and that is reassuring. She is on tylenol with codine and morphine until tomorrow morning and we should probably go home with a prescription for the codine. Right now she is fighting sleep on Gigi's shoulder. She definelty has had enough. As have we all. Its been a super super long day. I can't believe that we've been awake since 4:45. I must be running on fumes. I'm not tired yet but I have a feeling its going to hit me like a ton of bricks.

I'm so thankful that we will be going home tomorrow. (as long as all is well).

Pray that...we get some sleep
the platelets are up and stay up
no internal bleeding
no more oozing from bone marrow biopsy sight
little to no pain for Alivia
positive RESULTS/DIAGNOSIS from these tests. Some sort of answer that is favorable.
strength for all of us.

My dad is heading home tomorrow (he'll be back Friday) and my mom is staying through the weekend. I am so greatful that they are here and have been here. When something is wrong in life you always want your parents and I am so blessed to have parents that are here for me at the drop of the hat (James' parents are the same way!) Aren't we lucky folk.

thanks for today...Viv for the great dinner, Jamie for driving it up here and keeping us company, All the grandparents for being here all day long. And all of you for praying. thanks.

Surgery

We all woke up at 4:45 (including Alivia) and got ready to get here. Livi did fine without having a bottle after 1:30. And she was allowed to have clears so we gave her some white grape juice on the way here.

We are out of surgery and in a room (7242) on the seventh floor. So nice to be able to hold our little girl in my arms. She did really well in surgery. We got here at 6:10 (late I know) and got all checked in, then went to the out-patient surgery center. We got checked in there and met out anesthesiologist (I can't spell read all big words quickly so as not to see the errors) and they gave her something to calm her. Then they drew blood so they could get a CBC to see where her plateletts were to help decide if she needed a transfusion. So after the blood draw (which went really smoothly because of the sedative) we waited for about an hour. We were calling Livi the "drunken sailor" she was so groggy and silly. She would point and laugh but then slump back and almost fall asleep. Very cute and a nice distraction. Then we walked her back to the entrance to the OR. Besides the waiting that was the hardest part of me. I hated handing her over. She cried a bit but settled down pretty well (sedative again!). Then we all went to breakfast in the cafeteria and then waited in the surgery waiting room. When they were done James and I got to go down to the recovery room and see her. Then I stayed with her till we came up to the room. She is hoarse from the intubation and has a 1 inch cut on the right side of her belly and they removed a lymph node from her jaw line instead of under her arm. So she has steri-strips on both and has a fever that they are keeping an eye on. they aren't sure if that is just her reaction to anesthesia (she got one the last time she came off of anesthesia) or if it is something else (pray it comes down quickly). Poor sweet girl. She is very relieved that we are all here now. She got to eat and did fine with formula.

My dad and I are going to get something to eat and my mom is holding the sleeping girl (Cynthia is keeping her company).

I'll write more later when we talk to the doc's. Thanks for praying! Please continue.

May 15th

Alivia is currently sitting in her excer-saucer, wiggling to Super Tramp (thanks Uncle Aaron!) and playing with markers (with their lids on...I'm not totally crazy). She and I are both recovering from the super busy weekend we had. And I'm trying not to freak out about tomorrow. (reading the Bible and "Beside Still Waters" when I start freaking...so every five minutes).

We got the call from the hospital and we have to be there at 6 am! I guess we are the first ones on the schedule at 7:30am. She can't eat anything but clear liquids after 1:30 so I plan on waking her up around 1:15 and giving her a bottle so that she is not completely starving on top of everything else.

I can say I am scared and nervous and would rather do just about anything than hand my perfect, sweet, little girl over to the surgeons tomorrow. But I know its for her own good. I just can't imagine her little body with scars. She has this perfect skin and the idea of scars is so sad to me. Even little ones. But if it gets closer to a diagnosis then good..right?!

Please pray that it all goes smoothly, no extra bleeding (her plateletts are low still so they will be giving her some after surgery). That she isn't in too much pain afterwards. That she isn't scared too much. That there are no complications and they get good samples. That we get some sleep tonight. That God heals my baby.

Happy Mother's Day!

Busy Bees

The last few days have been so busy! James' youngest brother William turned 18 yesterday and we went to his family's home for a birthday dinner. No William can legally drive after midnight to buy lottery tickets and smokes on his way to war. Ha ha. We took a walk after dinner around the Haughery's neighborhood (my favorite part of the evening) and just talked to Will, John and Chris and then Bill and Cynthia and Cheryl and Paul (Cynthia's sister and her husband from NY) caught up and we walked another time around the loop. I love spring. Livi gets so excited when she sees her stroller because she knows a walk is in store and she loves walks.

Today we went to market (our favorite Saturday morning activity)and then John (the middle Haughery boy/man) graduated from college and had his grad party. There were 40 people there and everyone did a very good job of not touching Alivia (thanks!). Alivia had a blast. There were balloons, a puppy and Eden Y. (3 of her favorite things) so she was truly entertained and had fun. She took a great nap when we got home (overtired) and James and I took advantage it and slept also! MMMM....naps. This evening we are just laying low (went for a walk) and watching some tv...trying to get ready for tomorrow (another big day with the Haughery family).

James gave me the greatest mother's day present ever...he cleaned the downstairs for me! Oh one less thing to do. Thank you Sweet Heart. Couldn't ask for a better present.

Livi seems to be doing really well. She is starting to stand on her foot again so that is really reassuring. She wants to stand and is acting like she wants to take some steps. I can't wait till she is back to criusing around.

Thanks for today...

Cards from Beth Altrogge (glitter!), Betsy Camp and family (my cousin), Paul and Mary Jane Pikerowski, a great letter from MaryAnn Plesinicher (thanks for sharing!), Mothers Day cards from Marmie (can't wait to see you), Andrew (only cried a bit..can't wait to see you too!) and the Bowden Family
And two cute outfits...one from Paul and Cheryl West (Cynthia's sister and hubby) and one from Anne and Craig Bowden (Bill's sister and hubby)

Happy Mother's Day everyone.

What?

Woke up today and things were going great (including Alivia sleeping until 8:30... woo hoo). Then after breakfast we went to play in the living room. Usually she likes to cruise around the coffee table and get her toys but not today. Today she stayed in one place and when I tried to get her to come to me she started to cry. At first I thought she was just crabby but she wouldn't put weight on her left foot. So I called Hershey and they paged the doc and he said to go to our pediatrician (since we had just been up there the day before) and so we did. They think that during all the times she was being held down (x-ray, echo, blood draw 1 and 2) that she pulled a muscle in her leg. Poor kid. As if we dont' have enough going on. So we are watching it closely to make sure nothing else develops (swelling, bulges etc).

We did find out that her white blood cells are down to 80 thousand (thats 100 thousand in a week...crazy) and her platelets are up and her reds are down. Who knows. Today's doc appointment was pretty hard. She got so upset (memories from yesterday maybe) and was gagging on her spit and fighting for all she was worth to get away from the doctor. If she does that during the other exams I can see why she got hurt.

Thanks to Dan and Julie (and baby Jude) for dinner. Scrumptious. Thanks to Rod and Gingi Allshouse for the 3 cute books (we spent 20 minutes putting the little letter in the envelope in the one book).

Pray that her leg gets better quickly and she can enjoy playing again.

blood donors

I just wanted to say that anyone who does want to donate can call me or John Haughery or Cynthia Haughery for directions. Also just make sure before you do go that I have filled out the correct paper work for you so that it will be set aside for Alivia.

ps. Kiera...I filled out the paper work for you so you can donate Friday if you get a chance. Thanks a ton.

Long long long day

Today was a really busy day..a busy, long day. We had our surgical consult at 10:30 (we left our house at 9:30). We saw a resident around 11 (he noticed she had an enlarged spleen...James and I had a good laugh at the obvious...). Then we saw the resident who was very nice. It was a quick visit really. Livi did pretty well. Almost let them listen to her heart and only screamed when they looked at her. (so that's not really a change from normal but it wasn't too bad either). We did find out that we will definetly be staying over night on Tuesday but that makes us all feel a little better because they will keep a close eye on her for a night to make sure she is doing okay. It will be a long night but a reassuring one and we will know that we only have to be there one night. Not as scary as the last time. By the time we got all the papers signed for permission for Tuesday's surgery it was after 12. We went down to the out patient clinic (where we always see the doctor) and they paged our Doc. It took a bit for him to come down (James' stomach was growling by this time and Livi was asleep). Her pulse oxygen was 98% (so the lungs are working well) but her heart rate was a little fast. So our Doc ordered a ton of blood work (more parasite tests), a urine sample and a stool sample. He then walked us to the heart lab and we got an Ecocardiagram (results...Perfect heart...Woo Hoo). So we did that then went back and had a chest x-ray (didn't see those results yet) then we went for the blood work (by this time it is 2:30). They removed the bag that collected the urine (they tape a little bag inside her diaper and collect it that way)..Shortly after they got a stool sample (we thought we would have to do that one at home and have Cynthia take it up tomorrow but we got it today). Unfortunately she also got her pants, onesie and socks messy so she was down to a shirt and blanket. Poor kiddo. Then we waited a while for then to figure out the labs. Since there we so many labs they had to figure out what was the least amount of blood they could take to run the tests (some tests have a range from 5ml to 10ml). Our Doc called and told them to take the least. Well they finally call our name and James went in with her and the story gets frustrating from here....

They go back into the room and the tech tells James to lay Alivia on the bed...Not a good idea for a baby. You can't just lay her down and expect her not to flip out. So James says No I'll hold her till you're ready...Which was 15 min later. Then two tech's come in and are talking quietly to each other about another tech (why isn't she in here...She's on the phone...etc). So they each took a turn blowing her vein (one on each side) then told us we should go home and have her drink a bunch of fluids and come back tomorrow. They acted like it was not big deal and not that important that we get these labs (um...hello we aren't doing this for fun..its really important!!). So we went back over the the out-patient clinic to ask our nurse what to do. This is where the story gets much much better. One of the nurses (Joanne) is really good at blood draws and she was there and so they went and she got it in just a few minutes. She even loosed the tournaquet (I can't spell) and instead of using all the little vials she just filled 3 larger vials up and then transferred the right amounts into the little vials. All in all a much better experience.

Originally we were supposed to wait around till the CBC came back but since it took so long (it was 4:30 by that time) they just said to go home. Livi didn't take a single nap (besides the 5 min on my shoulder around 12) so she fell asleep pretty quickly in the car and James and I didn't eat all day so we were so hungry and excited to eat when we got home.

Here are the things we learned today...There are no test left at Mayo (they ran some that our Doc didn't even order just to help out) and all tests came back normal. The test from Georgia (JMML) won't be available till the middle of next week (which our Doc thinks is a great sign because the test is a certain chemical mixed with her blood and if it is positive it would be growing like crazy). Her lymph nodes are much smaller than last week (Doc said he wouldn't have sent us to the surgeon for them if they were this small last week) and he was suprised how quickly her rash cleared up.

We also found out that family members can't be blood donors right now until we are sure that she doesn't need a bone marrow transplant. (just a precaution) Since family members might be a marrow match if she gets their blood then she could build antiboties and reject marrow in the future. So until they are sure only non-family members can donate. She is O+ so only those with O+ or O- can donate. But if you are either of these and are willing please let me know and I will get the needed paper work filled out. Again I would need birthday dates too. Thanks.

Thanks for today...
Great soup from Katherine (good to see you bright and early this morning) cards from Marmie, Jill Piper, Tony Versace (goes to church with my parents and works with my dad), The Moore family, John, Kristy, Hunter, Parker, Derek, Emily an Abigail Scherf, and Mother's Day cards for me from Becky Hoover and Chelly Miller (Becky's mom and Allison's grandma). Thank you all the card mean more to me that you know and someday when Alivia is older I will get them all out and show her how God used all of you so greatly in our lives during this time.

Giving Blood

If you want to donate and have it set aside for Alivia you can do that...but it has to be at Hershey. The only thing is that I have to sign you up before she needs it. So if you are going to be at Hershey or near Hershey and want to donate tell me so I can add your name to the list (have to make a list of all the people that I approve). I am doing a little list today of family that I know for a fact wants to donate. But others I have to sign up....also I need to know your birthday date if you want to donate.

Thanks.(by the way you don't have to donate....we aren't expecting)

Doctor visit tomorrow

This week we are going to the doctors tomorrow instead of Thursday. Originally we were supposed to have doctors visits both days but thankfully our Doc was willing to see us tomorrow. So we have the surgical consultation first and then our Doc will come meet us in the outpatient office. He is not even in the clinic but up on the pediatric floor so it is really nice of him to come down and see us. Saves us a whole day up there. Hopefully since we are the only patient he is seeing it will be quick. But who knows.

James is going with us too. That will be good for all of us. He is so great and will make the day less hard for both Livi and I. This is how great he is....the idea of blood makes him sick but he will go with her so I don't have to (incredibly hard for me to watch). Such a sweetheart. Thanks James.

Pray that everything goes easily, quickly and without too much trauma for Livi (she starts crying the second a nurse or doc even looks at her).

Thanks for today....super yummy meal from Tina (great recipe!) and a card for me from Brenda P. Thanks to everyone for continuing to pray.

oh yea...if you sign a comment don't forget to sign your name so we know who you are. Thanks.

Another day

I woke up to the most beautiful sound this morning. My little girl cooing to herself in her crib. She was laughing and screaming (happy screams) and being her cute self. I walk in her room to see her giant smile and silly belly wiggle that she does when she's excited and even better to find no new rash (thank you Lord!!!!)I told my dad she looks like she got ahold of some self tanner and just put it it spots all over her body. Its no longer red and doesn't seem itchy either. (Thank you again Lord!!). She is taking her naps like normal, cruising around and laughing at everything. All in all a great day. We stayed home, did laundry washed the kitchen floor and just had a fun time playing.

Yesterday was hard but today is a little breather. I am blessed to have this tiny window of "normal". Today she is the closest to how she was before our first big hospital stay. I know there are hard times ahead and that we aren't at the end of this journey. I am just so thankful for today...for no new developments and a day just to breath and have fun. Even in the midst of all of this there is great joy.

Sunday

We decided to go to church this morning and it was good to be there. Everyone did such a good job being sensative and not being offended when we couldn't hug or they couldn't touch Alivia. No one stared (or I didn't notice). It was nice to see everyone and get to worship. We left half way through and spent the rest of the day enjoying each other and being outside. It was a nice day.

My friend mentioned that we seem weary. I can agree a hundred and ten percent. I find each day a little harder. I find that I can't pray more than "heal my baby" over and over. We have friends who were pregnant at the same time as us and their little one is 2 weeks younger than Alivia and I was walking to the bathwoom at church and she toddled down the hall and my heart broke a little more. I just want a normal kid. I am so despearte for her to get well. Today is a month. The longest, worst month of my entire life. I can't remember the last carefree day. I forget what it is like to wake up and not be scared.

Pray for strength cause mine is failing. Pray for peace for mine is lost. Pray for healing, pray for a miracle.

What to do?

Tomorrow is church. I really want to go but there are two very good reasons not to. First the doctor said he regards Alivia as immune suppressed and so we should be extra careful of germs. At church everyone wants to shake hands or touch Livi's hand or give a hug. Its just a natural response but in this case it is so hard because we have to say please dont' or we can't. If someone shakes my hand and then I touch Livi I could get her sick.

So that is reason number one not to go the second reason is the rash. It doesn't look pretty (to say the least). We went to a store and to market today and we got a lot of stares. At one point I almost started to cry. It is so hard. (Bri I am so proud of you for leaving the house...people can be so unkind!) I want to shout what is your problem? She can't help it. What can we do stay home all the time? Its so human to just stare when someone doesn't look like us but now I'm on the other end and I realize how hard it must be to look out from a face that doesn't look "normal". It was almost easy to forget how sick or how serious this all was until the outward signs started. Now every time I change her diaper and see her little body covered in the red spots (which turn browninsh-purple the second day) I want to break down.

On a different note...I want to let everyone know we are talking about a second opinion with our doctor. So no more questions about it for now.Our doctor is sending out her bloodwork to many specialist (including the Mayo clinic) and consulting with many specialist (at Hopkins and Children's of Pittsburgh to name a few). We are doing the best we can. We just need to get through this next week and a half of testing and then we will make a decision. If we do get a second opinion it will probably be in Pittsburgh. For now we feel extremely confident with where we are and that is where God has us for now. I promise if we get the slightest feeling that we aren't getting the very best for our Alivia we will fly to the moon if we have to.

Thanks for today....

Cards from Jim and Heather Rice, Grace and Samual Spinetti (and their mom and dad), and the book "there's a monster at the end of this book" (I love that book!!!) and a Grover doll from my cousin Sarah. Thanks so much everyone

Home Again

Thank God we are home again. Welcome to the roller coaster folks. Its up, its down, and loops ahead.

We actually had a pretty good time at the doctors. The nurse (Lois) was actually able to get Livi's blood pressure. No one has been able to get her calm enough to take it since we were in the hospital. So that was amazing. It wasn't very crowded. Dr. P looked at her and then called the pediatric dermatologist and she said yes she would come in and see it (it was her day off!) So we went and had lunch and then she came and meet us at the out patient clinic (where we go Thursdays). The dermatologist looked at it and was able to do a skin biopsy (removes a circle of skin and all the layers below it...so it looks like she has a little hole in her leg). They numb the area with cream (put on before we went to lunch) then give a local numbing injection (screaming from Alivia) and then do the biopsy. It only takes about 5 min and they said it will heal just like a chicken pox scab only a little faster. They put this foam in the hole so it won't seap. She said it wasn't an infection of the skin but rather a sign of the infection/disease within. So it is related. (not a drug reaction). We can give benadril if it seems itchy (which it doesnt' because babies if they are itchy will just go after whatever itches to get rid of the itch). And rub vasoline on it. Otherwise just continue on. We will definelty have a surgical consult next Wednesday and have surgery either Thurs, Fri or Mon. It will be out patient also. And they will do the liver, bone and lymph node biopsy.

I would love to get off of this ride. I would love to switch places with Alivia. I would love to be normal again. But what is normal anymore? I'm not sure I remember.

Thanks for praying and a HUGE thanks to Jamie for coming with me and keeping me calm today. It was an amazing blessing having you there. Thank you my sweet friend.

hershey

packed in a hurry and we are headed back to hershey. Don't know if we will be admitted or not but pray. The rash is totally different from the other day (more hive-like) and is spreading quickly. Will update tonight on what is going on.

Rash

Alivia usually wakes up around 6 has a bottle and goes back to sleep till 8 or 9. Today when she woke up I gave her a bottle and changed her diaper and noticed a rash all over her legs...then her arms...then her cheeks!

So I called the on-call doc and he said to wait till 8 and call my doctor. Don't they know that waiting even 5 min when its about my baby drives me mad!? We may have to be admitted because of this and they would have to start treating her even though they don't know what it is.

I am scared. scared scared scared. What happened to normal live? I just want to go back to that. Please pray for us.

Drained

You would think that a day of waiting wouldn't be that big of a deal but it is. Every once of strength is put into the waiting, entertaining and calming the baby. And watching her cry and be stuck and scream because she is scared and confused. I am with her on the scared and confused. We learned not much new today. Her white count was up to 180, reds up to 97 and platelettes down to 54 (not dangerous but not good). He thinks the rash on her legs is from the antibiotic so we are stopping that (her ears are fine anyway). He did say that it was a bit more rash than they usually see with an antibiotic reaction but we'll see if it clears up. She also has what looks like dry skin on her face and around where her collar would be and he thinks that is from the sunscreen I used the other day (those are the only 2 places I put it). With both we have to watch them (oh goodie more to look for) and see if they get better. If not then we will have to get a skin biopsy by a dermatologist.

We are going for a surgical consult next Wednesday to schedule a bone marrow biopsy, lymph node biopsy (she has 2 new ones under her arm) and possible a liver biopsy. He also got in touch with a Dr. at Children's of Pittsburgh and that doc said that he should rule out ALL infectious diseases and parasites before diagnosising. This is hard to do in a baby though since it take a lot of blood to test for each disease and obviously she doens't have a lot to offer. So they have to start ruling them out as they can. Also they expect the final test results in regard to JMML tomorrow (from Alabama). He will either call tomorrow or Monday with the results.

So more waiting.

Here are the prayer requests....
Wisdom for the doctors. (especially Dr. Powell)
No signs of distress
Results from Alabama to be negative!!!!
Both the rash and the dry skin to clear up quickly.
plateletts increase (otherwise they will have to transfuse before the biopsies... In that case I hope we have enough time between the consult and the surgery for people we know to donate so she can use their blood!)
Peace for us. We are tired and drained and need a boost. I keep hopeing for some good news. Instead its either bad or just the same. Good news would be so nice.

Thanks for today
My parents for driving here last night just to go to the DR. visit today and then going back home.
Cynthia for going with us today.
Dinner from Christine Lewis and Kathey Booker (now I don't have to cook tomorrow either)
Cards from Marmie (the greatest grandma that a girl could ask for....I love you Marmie!), my Aunt Marie and fam and the card and gift from the Lutheren Ladies Aid Society. I don't know who you are but what a blessing. Thank you so much.

Blessings

So many people have blessed us in so many ways during this time. I am overwhelmed. Tonight the men from our care group came over and did yard work for us. When I say yard work I mean they pretty much made our yard look better than it ever has. I can't even believe all they got done. It such a blessing. Thanks Greg, Zach, Nathaniel, James W., Lyndon, Ken, Keith, Scott, Dwayne and Corey. Also, Jamie and Tina came and spent time with me tonight. Thanks girls I love it. And Owen hung out with Alivia. Kathy made brownies for tonight, pecan pie for James and egg strata for later. Such good food. Can't believe she can get all this done with two small kids running around. You are my wonder women Kathy.

Lots of people have responded that they are reading this and that is such an encouragment to me. Its much easier to write when you know who is reading. So thanks for that little blessing. We also got cards from Laura Irvin (teacher from Indiana, PA), Linda Cherieleison (school counselor from Indiana, PA)and a one from The Prayer Fellowship of Grace United Methodist Church of Indiana, PA...My parents home town is showering us with so much love and prayers right now. It means so much.

Tomorrow is our doctors visit for this week. I am nervous but also getting used to these visits. Her rash is still there and in fact has gotten worse on her legs. So we will have to get that checked out. I am praying it is just a reaction to the medicine she is taking. Also we are praying that doesn't take as long for this appointment. Last time we had a 10 am appointment and didn't see the doc till 1:30.. this week our appointment is at 10:30. Hopefully it won't be even later because she will be an absolute mess from lack of sleep by that time. Poor kid can't take naps when we are there. But that makes sense.. I would have a hard time napping there too. Also we are praying for a good nights sleep since last Wednesday was such a rough night. Mostly we are praying for a miracle.

I'm going to sleep now. Again thank you for all the support and love you are pouring on us. We are blessed.

One of those days

I decided to take a few days off from blogging. First of all I decided to see what it would feel like to not talk about Alivia being sick for a few days. It was nice but not reality and I realized how much I get out of the comments that everyone makes. Also we were very busy this weekend and spend all day Sunday either outside or with friends. It was a good weekend. (might be an understatement..we had a blast but those memories are to good to write)

My other reason for taking a few days off was an overwhelming feeling of vulnerability. I realized after talking to people just how many people are reading this. Writing this is a great way for me to get my thoughts out but I realized that it is really easy just to pour out my heart and not think about how many people might read this. Sort of a startling revelation for me. I thought that everyone who was reading had posted a comment and now I realize thats not true. So I am asking that if you are reading this and have never before posted that you would do me the favor of just this once writing your name, where you are from and how you know about Alivia. It only takes a second, you don't have to sign up or anything just click comment and annonymous and say who you are. Thanks a ton.

Alivia is getting tooth. Poor kid. She is going through it right now. She is sleeping a little better. She woke up with a rash this morning (one of the signs the doc told me to look for) so I called and talked to a nurse and she said (after I described it) that it was probably from the medicine. Alivia has gotten rashes before that look like this one. So hopefully that is all it is. Also, the Doc didn't feel like we needed to come in earlier than Thursday....unless a fever starts.

Thanks for today and the last few days...
Cards for the nurses from Nicholas Haughery (Alivia's cousin), The Millen Family, Lisa Allen (my aunt), Dr. and Mrs. Victor Lan, Kelly Tonkin, Sherry Vislosky and Lou Ann Miller (the great people who my mom works with) and Maryann Plesnicher.
Card for Alivia from Andy and Ann Carroll, Kelly Tonkin and The Moore's
And a bag of goodies from Aunt Lisa (she ate the paper airplane as soon as it came out of the bag and did the sign for please as soon as she saw the new signing video. We've watched it a bunch of times already. She sees the case and starts pointing at the TV. Obviously she loves it.)