Who's the cutest girl around?

I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.

Thursday, April 27, 2006

"She looks good"

To truly understand our day we have to go back in time to last night...where it all began. Alivia went to bed at her normal time and slept till midnight. (I didn't go to bed till midnight cause we were up chatting on the phone) Oh good I thought...just like the night before where she ended up sleeping 8 hours after her midnight bottle. No such luck. She woke up at 2:40 and was up for the rest of the night...minus some cat naps while being held. She would fall asleep but the second her bed was close by she was awake and crying. So you pick her back up and she would fall instantly asleep again. I walked her from 2:40 till 3:40 sleep for an hour while Mom walked her. Took her back at 3:40, changed a diaper and walked her till 5:20. At 5:20 my arms we dead and I was so tired I was getting silly. My dad walked her around downstairs in her umbrella stroller till 6:30 then my mom took over till 8. So no one got any sleep last night. We were all tired and just a little over sensitive. Except, of course, the queen who was amazingly happy. All those cat naps added up to a good night sleep for her..Go figure

"She looks good" was one of the lines the doctor said more than once. Her levels all remained constant (the white cells dropped about 9 thousand but he said they were amazingly stable). He talked to at least 2 specialists..Although he said he talked to 3 he didn't discuss the 3rd one. One was the JMML specialist from Alabama who said that people don't have that many eosinaphils with JMML. There is still one test outstanding but they are pretty sure its not JMML. The one JMML expert said that he knew what she had and mentioned a parasite (from either a cat or a dog) that he had seen in 2 children that made their eosinaphils really high. Unfortunately our Dr. Had already checked for that parasite and it came back negative. He did say that he was going to make sure that both the cat and dog version of the test was run on her blood. So there is still an outside chance that they only ran one version. That is what everyone is hoping that it comes back as this parasite. He said we are getting closer and closer to it being hyper eosinaphiliac (spelling??) syndrome which is a disease they usually see in adults over 30. All of the experts that he talked to said they wouldn't be treating her yet either since they aren't sure what they are dealing with and their have been no side affects yet. They all said they would continue to try to figure out exactly what it is. Once you start treating it changes the way the blood and marrow appear and it would be impossible to diagnose afterwards. So everything stays the same for now. We continue to go along like we have and pray for no negative side affects.

One of our other big discussions was about a second opinion. He said he would welcome one and might actually recommend one in another few weeks. He told us of some people he would recommend. We also talked about a doctor at Children's Hospital of Pittsburgh who recently treated one of my dad's friends kids (15 yr old boy with a lot of similarities to Alivia's blood work) and our Dr. had heard of the doctor (said that he was Nationally known) at Children's and said maybe we could get our second opinion from him if we wanted. So now we have to consider where we will go. We have about a month to decide and our doctor will make all the arrangements for us including sending all the info they already have on her. She is going to have another bone marrow biopsy and a lymph node biopsy anyway so maybe we will be getting it done in Pittsburgh (the Allen half of the family just got really excited that they might not be that far away for a little bit). We haven't decided but it would be nice to be in a hospital that is still near a lot of friends and family (since I grew up an hour from Pittsburgh)

So it was a long, long, nap-free day. She finally fell asleep on the way home but not for very long. While we were at the doctors we figured out one of the possible reasons she didn't sleep well...she has the beginnings of an ear infection. (getting anti-biotic tonight)

Pray requests...better sleep tonight (lack of sleep makes us all a little crazy) , ear infection to heal quickly, WBC's to continue to drop (if they continue to drop 9 thousand each week that would be amazing), and for the parasite test to come back positive. That would be the best diagnosis!

thanks for today....
Great salad and cutey card from Tina, Dwayne and Owen Lapp
Cards from Jerry and Peggy McGarvy, Bill and Anita Kennelly (and thoughtful gift), Frank and Carol Frederick, Nikki Lilly, Matt and Erica Aikens, Jill Piper, 2 cards for Alivia's nurses (thanks Marmie and Briana!!) Keep those coming. And sweet cards and a fun baby activity book from Eric, Stephanie, Mary, PJ and Sarah White (James' cousins....or second-cousins..) Also a letter from Jim and Jean McClements.

I am collecting nurse thank you cards and will give them next Thursday..so you have a week. I would rather this next week if you are planning on sending a card make it to the nurses and not us for a week. That would be so great. I want to shower them with affection since they were so amazing! Thanks everyone.

19 Comments:

Anonymous Anonymous said...

Please let it be Pittsburgh... please let it be Pittsburgh... please let it be Pittsburgh. That is if it has to happen. No, I'm not excited at all ;-)

I'm praying for all of your requests and think of you guys all of the time (especially since my screensaver is a montage of Livi, and that one cute Easter family pic snuck in there, too) Wish I could take a turn walking the planks with her.

I'm so happy that things went well today.

Love, aunt Lisa

Also, keep your eye out for that DVD and I'll try to get a card for the nurses before you go next time.

6:17 PM  
Blogger Heather said...

I want Alivia to be Ok and I don't want you to have to come to Pittsburgh to go to a hospital, but I would get to see you guys. I feel so bad because I have not been able to see you and I want you to know that I am here for you. I will pray that you don't have to get that second opinion because Alivia is just fine. I would love to come visit you guys though if you had to come to Pittsburgh. I am glad you heard some good news today. I am also happy that they saw that she was getting the start of an earache so that you can treat right away and before it got too bad. I hope that all of you get a good nights sleep tonight. Talk to you soon!

Love, Heather

7:06 PM  
Anonymous Anonymous said...

Sorry we couldn't have lunch with you guys today. Sounds like Alivia and Ryan have similar sleep patterns...meaning they don't sleep at all. Hope we can meet up next week. I feel really bad about missing you guys today, but Ryan turned into a monster shortly after noon.

Holly

7:31 PM  
Anonymous Anonymous said...

Good to hear all this update stuff from the doctor. We'll pray. Oh my gosh, an ear infection! That is so normal for such a complicated little girl! Can't wait to meet her. Aunt Cheryl

8:35 PM  
Anonymous Anonymous said...

Ok...Emily is slap happy. I was the one who stayed up with her all night and actually walked 10-15 miles. With my feet no less!
The Pediatric Oncology is a joyous place...all these children of various ages, with debilitating diseases. Everyone makes a fuss over Livi and her big, blue eyes. Another answer to prayer..the lab tech got Livi's gallon of blood on the first try. What with the lack of sleep, we were all a bit "touchy" today. Emily kept telling me to quit yelling at her...I wasn't yelling at her, I just talk loud. After Livi's "nap" this afternoon...she opened cards. She loves doing that, there was one with a sparkly elephant (Carol Jean, you genius) you are all SO THOUGHTFUL it is setting a real example to me.
Currently the street in front of Emily and James house is under some sort of construction. Or rather it is a training exercise for sign holders. People are having all kinds of opportunites to express their patience...it took me an hour and 45 minutes to drive not five miles to CVS to get Livi a RX for an ear infection. After waiting and waiting, I just went to the head of the line and told Mr. Sign Holder I had to get a perscription filled for a sick child. He let me cut though someone's yard (slight exaggeration!). James already went out front once to ask people to quit beeping... Livi's bedroom is in the front of the house. The man was quite apologetic. Thank you again for all your prayers and tangible displays of love...they are the glue holding this play together. (God's word becomes dearer each day...Jesus asked to be excused from Calvary, but he wanted to do God's will. I am not Jesus so I am imploring God to remove this trial and will wait patiently until he does). Love to all, Gretchen
P.S. I have gained twenty pounds eating gingerbread...is there a conspiracy or what? Gigi

9:03 PM  
Blogger beth said...

i love you em, and am praying and praying.

and i love you too, gigi!

i know God is strong and by your side every single second. i hope the construction doesn't last too long.

xxoo//beth

9:50 PM  
Anonymous Anonymous said...

Emily,

It sounds like it was a good day at Hershey despite the lack of sleep. We will continue to pray for her WBC to drop.... 9000 in a week was incredible! Way to go Alivia!!
I might have missed the explanation of the dog or cat parasite. Can you explain it again?
We will continue to pray for God's mercy for Alivia and all. Waiting for the blog message that says SHE IS HEALED!

Love to all,
Lynn

PS: Gretchen if you didn't gain the 20 lbs eating gingerbread, you would have nothing to work off on those 10-15 mile walks at night... ;o)

8:02 AM  
Anonymous Anonymous said...

Thank you Emily and Gretchen for keeping us all up to date. I find it so helpful for prayer and for a sense of being able to share your burden.You are all, always, on our minds and in our prayers.And I suggest that after Livi is healed and life is more "normal" that you continue to blog because you are very amusing even in a difficult situation. I just feel like I had a little conversation with Gretchen because I could read her entry and laugh with you guys.Thank you for letting us all be a part of this and thinking of others even in the most difficult trial of your lives.Love,Mary Murphy

8:07 AM  
Anonymous Anonymous said...

Thank you Emily and Gretchen for keeping us all up to date. I find it so helpful for prayer and for a sense of being able to share your burden.You are all, always, on our minds and in our prayers.And I suggest that after Livi is healed and life is more "normal" that you continue to blog because you are very amusing even in a difficult situation. I just feel like I had a little conversation with Gretchen because I could read her entry and laugh with you guys.Thank you for letting us all be a part of this and thinking of others even in the most difficult trial of your lives.Love,Mary Murphy

8:07 AM  
Anonymous Anonymous said...

Hi Emily,
From her comment, it sounds like your mom is a bit slap-happy, too!

Us folks in southwestern PA are blessed to have some of the best doctors IN THE WORLD right in Pittsburgh...literally. Between UPMC (Children's is part of that) and West Penn-Allegheny, they've got all the bases covered here. (Check out their web sites sometime.) When I was sick, my doc wanted me to see Dr. John Lister in Pittsburgh, who is like the WORLD authority on Hodgkin's, to see if I was a candidate for a certain treatment. Well, I had to wait to see him because at the time, Dr. Lister was lecturing in Paris, France! How about that?
But, as believers we can always go to the Great Physician. God is continuing to work out His will in all of this. And you and your family have been so faithful. What a blessing and inspiration to us you guys are!
You are so sweet to think of the nurses! Did you know that May 6th is "National Nurses Day"? Good timing, huh?
Here's something I just thought of: I'm not in the medical field, but an infection would raise the WBC, right? Yet, even with Alivia's ear infection, her count was down?! Isn't that something?!
I pray that Alivia's ear infection clears up real soon and you all have a great weekend.
Mary Ann K.

8:36 AM  
Anonymous Livi's Aunt said...

Thanks for the detailed update on the doctors visit! We thought about you guys all day and prayed that the appointment would bear hopeful news. We'll keep praying that these further test would produce a diagnoses that can be easily treated.
Nicholas would like to make a card for the nurses. We'll give that to you Sunday.
With love,
The Haughery bunch

8:50 AM  
Anonymous Anonymous said...

Hi all, miss you all so much. I'm relieved things have not gotten worse! We'd love to have you in Pgh. but lets let it be for a visit & not a hospital stay! God is working on healing that precious girl and I feel she will be completely healed. You're in our thoughts constantly! You all have handled this amazingly! I'll call soon, I hate to bother you guys since I never know when you might be getting a catnap in. Love to all, talk to you soon! Maria

9:05 AM  
Anonymous Lori Randolph said...

Good morning Emily,
You, Alivia and James were in my prayers this morning. One of the things I was praying for was for her WBC to drop...praise God for an answered prayer! Btw, I love reading your posts and your mom's comments...you two are hilarious. I can see where part of your great personality comes from -- your mom! Thanks for the update and for putting a smile on my face while I read your last post and your mom's comments :-)

Much love and care,
Lori

9:29 AM  
Anonymous Anonymous said...

So today, Pap Pap and Gigi put Livi in her stroller and walked up to the Turkey Hill for some really good coffee. We were still wearing our "sweats" (e.g.) pajamas, and I am sure that people driving by thought" Oh,my goodness look at those poor old folks stuck with that little kid...and having to walk on a highway to get coffee,,,we really ought to boost Social Security or at least Medicare". Oh to be anonymous here in Lititz.
Currently we are on "poop consistency" patrol. Are they watery, how does one tell with todays supersonic ultrabsorbent microweave diapers? So, yes, I am playing in poop. SOme things never change, if you can't garden, play in poop.
Today, I would like to thank PennDOT for the kleig lights out frontlast night, I believe the sign training school went superbly.
Livi only got up once...
Whoops, the blog police called, this is too long! Thnaks for replying MM, LT (who is 50!!!) Lori, etc., etc. I feel the love. GIGI

10:02 AM  
Anonymous Anonymous said...

Dear Gretchen,
I pray that our family never has to face what yours is dealing with now but if we do...I hope that John and I could handle it with the faith, love and devotion that you and Dave are.
God Bless You All,
Maryann Plesnicher

11:21 AM  
Blogger beth said...

dear gigi...
i'm sorry you can't garden right now... but... i liked your story...
love you,
beth

1:01 PM  
Anonymous Anonymous said...

Dear Gretchen and Emily, I was so relieved to hear that Alivia's WBC has decreased. The Lord is so good. I keep scripture verse and encouragement notes handy to my eyes so I can think about the Lord rather than blankly looking out my back window as I sit at my computer. Here's a couple: (What you are experiencing is not a set-back but an opportunity for God to demonstrate His faithfulness.) (What we learn in the dark-We are to share in the light--God is then glorified. Yet God uses different paths for each of us) (Contentment comes through Christ alone--The Lord is my shepherd I shall not want.) We con't to pray for all of you and esp. Alivia. Love, Avia (HR)

3:25 PM  
Anonymous mrs.c said...

dear emily,

thanks for your continued example to all of us on caring for others - the "nurse cards" this is so kind and thoughtful of you - the staff at the hospitals work so hard to care for others all day long.

i will continue to pray for peaceful rest, strength and focus as you care for your family in this season.

i love you - mrs.c

4:29 PM  
Anonymous Anonymous said...

hi everyone been thinking and praying for you all especially alivia.gigi are you sure it was just the gingerbread!hope you all get a good nights sleep.this blog stuff is pretty cool. over and out.love munya

8:22 PM  

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