not sure how they do it...

I'm not sure how they do it, but every morning my kids seem to wake up even cuter than the day before (ok, some mornings, their cuteness is a bit too early or too loud, but nonetheless, usually cute!)

here are some tidbits:

• yesterday i said to Mia "Wow! you got even prettier last night while you were sleeping!" (something my mom used to always say to me) and she smiled and said "Yes! And Bubba got even cooler!"
  
• For some reason, mia doesn’t like the smell of peanut butter – well, frankly she just has a sensitive nose like me and doesn’t like a lot of smells, but she has been in the playroom whining because jackson’s morning peanut honey sandwich smells bad… then ella just walked in with hers and mia shouts out “Aaaaagggggggggghhhhhhhhhhhh!!!!!!!!!!!! WHY DO YOU GUYS ALWAYS LIKE PEANUT HONEY SANDWICHES! THEY DON’T SMELL GOOD AT ALL!!!!!!!!!!!”
  I am in the kitchen quietly laughing!
  
• Yesterday in the car she shouted out “Bubbie!! You’re breaking my heart!!!!!!” and I turned and stared at them and they stared back and then she just burst into laughter like she was the funniest girl in the world! We all laughed with her, because frankly, she is!
  
• Little Ellie turned 2 last month and she is amazing. She has been talking in long complete sentences for a good 6 months or more and she is hilarious. She makes THE. BEST. FACES. all of her emotions show - and it is just so funny watching such a tiny person act so old.
  
• Ella is already potty trained. Yes, my friends, curse me all you want, but it is true! Muwahahaha!! I take no credit though (ok, maybe a little!) she did it on her own, i never have to ask her if she needs to go - she just comes running through the room shouting "hurry hurry! i have to go potty!" when she needs too. She was potty trained only 4 short weeks after her 2nd bday. (Mia was 5 weeks after her 2nd bday and jackson 8 weeks after his 2nd bday - so they all potty trained really early). so this makes me the PROUD and HAPPY mama who is out of the diaper ages!! WHOO HOOO!!! Yeah me!!
  
• Ella also has seemed to surpass the whiney stages... a couple of months before her bday when she was starting to cry and whine at all things, in typical 2 year old fashion, i just sat her down and explained that her behavior wasn't really something tolerated in the Leininger house and she needed to use her words since she had so many of them. I totally did not expect my "talk" with a 22 month old to work, but it DID! she is usually very silly and bubbily and just tells us what she wants, it is AWE SOME. however, she, like all of us, gets to be grouchy when she is tired and hungry. but hey - if we admitted it, we ALL do that! :)
  
• both girls spend their days in dress up clothes and plastic high heels dancing, singing and pretending to be princesses. they are just so cute!
  
• Jacks has become much the little artist, carrying around pencils or crayons and his drawing pad - EV ERY WHERE!!!!!! He draws anything and everything and is getting very very good at it. He is still loving to read and is good at that too - reading to us signs as we drive or walk around places too. I am so proud of him. He loves to ride his bike and play outside. He also has a little neighbor friend that he can play with, so it is nice to have another little boy around for him!
  
• Living in Boerne, just around the corner from the Guadalupe river has been amazing. We can take the kids to play in the river anytime we want and they really enjoy it. All 3 are very adventurous and love to explore and play in the water and woods, examining plants, bugs, rocks, animals, etc... we floated the river on Memorial Day with my parents and it was a beautiful time. Even on a busy holiday, this area of the river is so private (really just people from our neighborhood) and so it was pretty empty and peaceful. Jackson swam over 1/2 the river along side the big raft that he, Mia and Phil shared. Ella was in a smaller raft with me and actually laid on top of me and took an hour long nap! She did not even wake when we went over some very bumpy/fast rapids! When she did woke, i think she was mistaking me for "Dora the explorer" as she kept shouting at me "Paddle! Paddle! Paddle!!" Crazy little toe-headed girl!
  
• The house is beautiful and we are so thankful to be here. We are still waiting on some items to get finished up, but overall, it is a joy. Quiet and peaceful. We have our standard family of deer every morning and night, have seen a fox running by, lots of birds of all colors - nests with babies around, and even a cute little skunk that walks around the backyard some evenings (we are happy not to disturb him! and glad we don't have dogs to get sprayed either!)
  
• wish i had taken more notes on the funny things they say and do every day... i have not been good about keeping up with things lately, but maybe i will get better! good day to you all! :)

Latest and Greatest on Mia!

Hey everyone! I am finally sitting down to let everyone know about Mia’s latest appt with the hematologist/oncologist!

We have fantastic news!! ALL of her lab work came back in the normal (still on the low end, but normal) range! The vaccines they gave her to jump start her immune system really worked! The dr. smiled and told Mia how much he would miss her (but said “but not your mom who always gives me such a hard time!!” haha – he was joking, right?) and that she was released from his care and was completely healthy!

My sweet dancing smiley girl flashed her big dimples and started to jump and clap and laugh when the dr. told her she was not sick ANYMORE!

I of course cried, what’s new, right?

We are basking in our fabulous news!

Thank you all so very much for your prayers, support and friendship! This really has been THE longest 10 months of my entire life.

What a relief, I really can’t express it enough!

Love,

julie

I don't like kisses...

Mia tells us frequently this that is so cute, we just can't correct her!

"I don't like kisses... I like hugg-es!"

so so cute you want to kiss her all over!

I got a big birthday kiss from her today and tight squeezy hugs for a long time... the best gift EVER!

Much more whooping and praising to be had...

here at the leininger house today!

It started out as a typically very busy day here with lots of errands when I got a phone call from Dr. Atkins requesting that I hurry to Methodist Children’s Hospital so they could do more tests (via blood work) on Mia.
I hung up the phone and promptly burst into tears right in the middle of my hair salon. Quickly finished up, grabbed Mia from my mom at our hand off point and drove frantically to the hospital.

We waited in the lobby and I tried to administer her afternoon IV and the picc line appeared to be clogged, again, I panicked and burst into tears begging the nurses to please help us… imagining the worst… they paged Dr. Atkins….

After a bit of a wait (watching mia twirl in the lobby in her pink ballerina tutu that she had insisted on wearing to Grammy’s today) and talking about princesses and snacks… we were called in. They did more immune deficiency tests and one other test and then Dr. Atkins came in and REMOVED MIA’S PICC LINE! No more tubes attached to my baby! No more IVs! No more midnight antibiotics and worrying of clogging picc lines! SHE IS THRILLED and so am i!

On her way out – while doing her vitals, she did have a low fever (100) and she has developed a cough. Dr. Atkins is thinking it is probably just a common cold, but quickly did a panel of tests on her with multiple throat and nose swabs. You just gotta love how thorough this woman is!

I dashed off to sign my portion of the paperwork to close on our house that we officially sold today (yay!) as I missed the 3:30 appt, but they waited for me, and Phil finished up paperwork at MCH and walked Mia out. He said her smile and tight-jumping-for-joy-hugs were just as joyful as they were yesterday.

SHE. IS. PRECIOUS!

We then all met up at Chili’s with my parents to celebrate Mia’s wonderful progress in true Leininger family style… LAVA CAKE! J

It really turned into a terrific day and I just had to share!

Love,
Julie and Mia – my happy twirly girl!

A Good Report! (October 4th, 2007)

GOOD NEWS!
After over 2 hours of waiting… the dr. spoke with us and told us that Mia’s CT Scan showed that she has REALLY IMPROVED!!!!!!!!
Meaning – the meds are working, no more surgeries!
She is waiting a few more days to hear from the CDC in Tyler, TX, but after that she thinks she will remove the PICC line and switch her to some strong oral antibiotics!

Mia REALLY broke down today when she found out we were going to the hospital. She started crying big heavy tears that dripped onto my leg as I carried her out the door, it was heartbreaking.
BUT! As her daddy, she and I were walking towards the door of the hospital on our way OUT she stopped in her tracks and said “Huh?! Are we going HOME?!” and we said “YES!”
She gasped with excitement and jumped into my arms for the biggest hardest hug ever and she had the most enormous smile on her face with her eyes squeezed shut. It was a HUGE moment of celebrating for the three of us, right there in the middle of a busy hospital lobby. What celebrating there is to be done!

God is so good and so faithful to heal our sweet baby girl and we are so thrilled, we have all 5 been laughing, and dancing and singing our hearts out all night. THANK YOU LORD! And thank you FAMILY AND FRIENDS for your prayers and encouragement!

What a sigh of relief we are all breathing tonight… next step, no more IV… but we are almost there!

Praising God and loving my family,
Julie

Thursday update on Mia - CT Scan, October 4th

Hey everyone!
Wanted to quickly update – Mia has been doing wonderful at home with all of her IV meds and oral meds here at home. She is so wonderful about taking it all and even likes to help push her own iv meds in. Dr. Mia we call her - and she giggles and says “I’m just pretending!”

She had a follow up appt with Dr. Atkins (infectious disease specialist) on Tuesday morning who confirmed that what Mia had is “So rare! One for the books! You are just 1 in a million and so special Mia!” She was very nice. She said her immune deficiency tests did come back abnormal, but they are hoping that is just because she has been so sick in the hospital. They are going to do the blood work again. Hopefully she will be OK.

She is having another CT scan today at 1:30 at Methodist children’s hospital. The results of that will tell us a lot. If they are REALLY good, she might get her PICC line out today and not have to do the IV meds anymore… if they are really bad, then we will go from there. The dr. is meeting us at the hospital today to talk to us about the results.
They JUST made the appt. this morning at 8:45, so that is why I am just now letting everyone know. Sorry for the delay in communication.

Thanks for keeping her in your prayers and thoughts and for all you are to our family!

More later… hopefully all bright and cheerful news!

Love,
MamaMia! J

Mia - Day 14 - 2 week Mark - GOING HOME!!!

PRAISE GOD!!!!!!!! WAHOOOO!!!! *jumping, dancing, whooping and hollering and singing inserted here*!!!

We have met our two week mark and we are GOING HOME!!!!!!!!!!!!!!!! We got the happy news about an hour ago and we are all beyond THRILLED!!

They are waiting still on lots of labs at the state department of disease control (CDC), but she has some more information and is changing her antibiotics and sending her home instead of making us wait any longer!

Mia has her picc line in (port) and will receive IV antibiotics at home every 6 hours (a home health nurse will teach us and over see this) and will also have blood work done every Friday. We will continue to see Dr. Atkins (infectious disease specialist) every week and 2 weeks from now she will have another CT Scan to check the progress of the abscesses and make sure they are indeed shrinking. Mia will also be on oral antibiotics. (none of this will thrill her, but it will be awesome because we will all be HOME TOGETHER!!)

Again, thank you all from the bottom of our hearts for all the outpouring of love, prayers, gifts, help, meals, laundry, packing, unpacking, the list really goes on and on!

We love you all!

Now – once we get home to the rental, I will be completely out of commission on email because we haven’t had time to get out phone, internet or tv hooked up… so if you need me – just call my cell! (210-687-6783). I have been keeping record of every email and prayer written and plan to put them all in a book along with all the pictures and cards and other mementos for her some day. She will see just HOW much she was loved! Oh she is loved and so are we! Thank you thank you!!

Love and blessings 10 fold to you all!
Julie and Phil and the PRINCESS MIA ANABEL!!

A cute note from Sutton

Sutton was Mia's babysitter yesterday. Had her so worn out from playing that she slept a solid 13 hours last night! whoo hoo!

Hey Julie,
I'm getting sidetracked while writing my club talk for tonight, so I just wanted to send these pictures on to you while I'm procrastinating! haha
I'm sad I didn't have my camera with me during our 2 hour trip to the play room! We played on that little mat just for a few minutes, basically with every toy they had. She did a very good job of cleaning up all the toys she played with. Then, we played with one of the baby toys on the top of the TV area that plays soothing music...she was enthralled by that! Then...the highlight of the playroom was the bowling pins...we bowled for a LONG time and she never got tired of it!!! we set up all the bowling pins, then she took one in her hand and just threw it at the pins and they all crashed and scattered on the floor and she rolled with laughter every time (even the 56th time!!) Then, we read about 8 books...and by read I mean, we made up our own stories by looking at the pictures. Then, she found the baby bouncer thing and put her baby in it and played with that for a long time...we even took it back to the room and you have probably found already!! When we got back to the room, we played a little more with her baby and then put the baby to sleep. We colored just for a little bit on the white paper then opened the felt coloring board and colored on that for a long time. The markers that came with that toy were those color changing markers so she was super excited to use the white marker to change the color!! Then, we had a balloon fight with her Get Well balloon and Pooh Bear. She was very excited to bounce the balloons off of everything in sight!! Her dinner came and just as soon as it was walked through the door she said with a gross look on her face, "what is that smell?!" (it smelled awful!!) I said, "well! that's your dinner..." I opened it and saw that there were carrots on it (she had told me earlier that she liked carrots) so I got really excited and said "YAY!! carrots!!!" and she said, "no thanks" They should make those dinner smell a little better and maybe their patients would actually eat. haha We also played with play-dough, put on a movie, but didn't really watch it...we were too distracted by taking funny princess pictures (mine are going to be burned! hahaa) She did not stop talking the entire time which made me very happy because you can just tell she is feeling sooo much better!!! At one point she kind of just put her head down on the pillow and I asked "are you tired, Mia?" she shook her head yes, but then just popped up and waved her hands around like a scary monster and went back to playing play-dough. I told her that she could take a little nap and she asked "are you tired? do you want to take a nap? you can lie here and take a nap" So I went over to the other side of the bed and sat there with her, but all she really wanted to do was tickle me! hahaha
Long story short, the nap thing never happened!! It was too cute! I always seem to write novels when I am writing e-mails.
Hope you enjoyed it!!
Sutton

Mia - Day 13 - Still here... :(

Hello Everyone,

Today is day 13 and we are STILL HERE. We had high hopes of maybe being released today, but it was no such luck, even with our begging we got no where.
Dr. Atkins finally told phil after a lot of conversation that she “wouldn’t be a good dr. if she let mia go home without knowing what this is and having all the answers.”

Phil said “Well, what IS this?? what does she have!?”

And she said “it’s something very very rare and if I let her go home and the home health nurse misses some subtle sign of something and this gets worse it could get so out of control that we wouldn’t be able to get a reign on it and it would be irreversible.”

Not a happy answer, but a really good reason to keep her here! That is what I needed. (Although we are not thrilled to be here, obviously.)

Dr. Atkins said she called the CDC of Texas (center for disease control) in Tyler, and talked to their very top person and told them how important this case was and that Mia is on priority and they should have something tomorrow. So we will pray that it is GOOD news and not any more problems. The new labs will show the dr. if they should change meds or what. Hopefully it will be something that allows us to go home soon. We will see.

Thankfully our good friend Sutton is on her way up to watch Mia at the hospital so I can run home and try to get their rooms set up in the new house and help Phil unpack. Ella is napping and spending more time with my mom today. Jacks is with Phil.

This is just so crazy. My daughter has such a rare disease that no one even knows what it is! What in the WORLD???????????????????????????
Thankfully, GOD KNOWS! Hopefully the rest of us will know soon too and get this show on the road and get this sweet girl back home with her family! These 2 weeks apart from everyone and apart from PHIL! (ack! It’s killing me!!) is just too much. Though, we do know, the situation could be so much worse, we are trying to keep it all in perspective.

But that is the latest today! Just wanted to give an update! Thanks!

Love,
Julie

Mia - Day 12

Princess Mia loves to dance... (these are the first words to a song her daddy made up for her!) She has been fabulous today! Here are some of the pictures from last night and today!

Tomorrow we might get to go home!! *fingers crossed*

(pictures coming soon)

Mia - Day 11 (2nd surgery)

Mia is AWESOME!!!!
Today the ct scan came back the same… so at least it was not WORSE! Shew! Praise God!

She had her surgery today at 2:45pm and she really soared through! If she continues to do well, she will be able to come home soon with home healthy doing her IV antibiotics for another month and then oral antibiotics…

Keep praying she is fever free and her cheerful self and that we are home SOON!
Thanks so much for all the encouragement and prayers!

Love,
Julie and Phil

Day 10 - another day full of Mia's dimples!

Grammy comes every morning! I forget to take her picture! Gramma sat with Mia some today too!

Sutton came today and brought Mia a princess crown and earrings (among other things!)

Sutton told Mia to close her eyes while she drew her a special picture! look how cute she is!

Some homeschool friends stopped by to bring her a book too!

Chris Aaron came and played music for Mia. She teased him at first and covered her ears while giggling, then she got comfy and listened and then fell fast asleep. It was a sweet time with gentle beautiful music -very soothing to the soul!

Tonight the Schumann girls came and Mia loves them! They brought her more gifts and candy and played a little!

Some of my girlfriends from lifegroup came and brought pizza and hung out! so very sweet!

Then Papa stopped by and they painted and watched a little bit of a movie and shared some popcorn!

but WE MISS DADDY AND WE MISS BUBBA AND ELLA AND BEING HOME!!!!!!!!

Mia - Day 10

Please pray for these things tomorrow!

• 8am movers arrive to move us from one house to another! Pray it is faster than any move ever before as Phil is needed here at the hospital too!8:30am – Mia’s 4th CT scan… will determine how things are. Pray it is a good report.
• 2pm – Mia’s 2nd surgery (3rd time under anesthesia in 1 week) to drain the other abscess.
• Pray for her to feel OK and to make it through another day without eating.
• Pray for the other kids as they are coping with being apart from Phil and I
• PEACE!
  
  Thank you!
  Love,
  julie

finding creative ways to lay on this same bed! DAY 9!

but sometimes we have fun!!

Here she is painting her own nails with "play" fingernail polish (lovingly referred to as ponytail polish).








And this is one of our favorite nurses Phyliss! The left arm has Mia's picc line in it and she has a flashy armband protecting it right now. She came out of the OR with a green one and as soon as she was able, she requested PINK! So Phyliss was convincing her to put one on her other arm so she would look like a 70s rollerskate girl! Mia was excited to comply and her and phyliss giggled as they got her dressed up in the bright bandages. I am so blessed the nurses here are so fun with Mia and so kind!






Here is Mama and Mia brushing our teeth. Mia looked at me and said "Mama! You have white on your mouth! that is SO SILLY!" i took a picture of her because tonight was the first time in a while i kept seeing her flash her brilliant smile!







and here is cute smiley dimple girl after getting her hair washed!!







and listening to a story from Bubba! Last night Jacks told me "I am so mad at that hospital for not letting Mia come home! I am just going to drive up there and bust through those doors and get Mia and bring her home!!" He is SUCH A GREAT BIG BROTHER!!

Vital signs and bloodwork and a glow bracelet from Maren!

poor baby!

Day 9 - Mia in the hospital

WEDNESDAY Evening update - day 9:

Mia is a trooper! She had her picc line put in this morning and that went well. Phil and I were able to be in the O.R. room with her while they prepped her and as they put her to sleep... it was wonderful to be able to be there with her but just so heartbreaking to watch. I sang her one of her favorite songs that i've been singing to her since she was a baby as she drifted off to sleep ("Sing Sweet Miabel... mama loves you")

She did well with picc line and was finally able to come up to her room and enjoy some fries and ketchup as requested! (Pastor Kirk came to see her and then her good friend Emma Kate and Jenny too - so nice!).
Tomorrow is a slow day - no procedures are scheduled.

She is scheduled to have another CT Scan on Friday morning - this one will be of the neck and the chest. We are requesting the scan even more though to make sure there are not any other abscesses anywhere else. More than likely she will have ANOTHER surgery on her neck on Friday afternoon (unless a miracle has happened and the scan shows that they have improved!!)
The have diagnosed it finally as being "Streptomycosis" - which is a very rare strain of a very rare disease. They are saying it is treatable.
However, they did a huge panel or bloodwork today today and are checking her for immune problems to figure out why this happened to her. So we are waiting to hear on that too.

THANK YOU TO EVERYONE who has helped with bringing boxes (still need some!), coming to pack tomorrow and visiting and most of all praying! i can't stop being so thankful for you all!

love,
julie

Updates so far - day 8 and before

I wanted to put all my email updates here too so I can have them for later:

Tuesday Afternoon Update - day EIGHT -
this is a bit scattered... but here's the latest!

The ct scan came back and the right side looks worse. the smaller abscesses on the right have joined together to make another big one that looks like it is forming more "pus" and will most likely need to be drained, but they have to wait for it to get bigger before the can operate on it.

the left side (that the surgery was on friday) looked improved - but way up above it are some more abscesses.

all 3 of her drs. have to meet together and agree if she can come home for a few days with home health IV therapy from home so she can be OUT of here and rest. They will have to do a picc line for her to be able to administer the iv antibiotics. this also is a procedure which requires anesthesia. the earliest they would do this would be tomorrow. they are coming to talk to me about it today... even though it hasn't been said for sure that they will do this or send us home. i was just begging them through tears to let her go home.

they are still waiting on news from microbiology - that is the hold up. the nurse said she has never seen it take so long to identify the bacteria - that means it is very rare. but they cannot send us home in good conscience without knowing they are on the right antibiotic and they need to assign the right antibiotic and then watch to see if it works.

people are looking for the picc line - they might have to have radiology do it if her other veins are messed up from the other ivs.
we will have to be extremely careful with the picc line not to let it get infected or pulled out. she has to be under sedation for the picc line. and it will take time to schedule the picc line and anesthesiologist... so no way we are going home today. tomorrow would be earliest. (and even then she looked doubtful)

dr. moe wants us to have another ct scan on friday. but he thinks that another surgery is likely but needs it to grow. he said she would have to be admitted again for surgery and then stay another night or 2.

i still haven't talked to dr. Atkins - but the nurse told me that microbiology is saying they think the bacteria is diff. than what they thought it was yesterday.

mia and i read a lot of stories and now we are watching angelina the ballerina.

please pray that they will identify this bacteria and that we will win this fight. the ENT said "it's just a matter of who is faster - if we can work faster than the bacteria and identify it before it continues to do more damage - we just have to see who will win. the bacteria, the body or us"
Interesting. please pray.

This hospital is a wonderful place to be - in regards to getting the best possible care. they just came in and told Mia that when kids are in the hospital a long time that they get to paint their own ceiling tile to put on the ceiling... so she is getting to paint her own! we will see what she and i come up with!
I know God is so good and I know He is going to heal my baby - i just pray it is sooner than later and they get her the right meds TODAY and we can win this fight!
I may be a little Mama - but i have my armor on and I am ready - no body messes with MY BABY!

thanks for all your love,
Julie

Subject: Monday noon on Mia - DAY 7
Quick update:

her ct scan is scheduled for 8am tomorrow morning.
They are almost positive she has something called "ACTINOMYCOSIS" and it is treatable by 1-2 months worth of IV antibiotics and then 6-12 months of oral antibiotics. It is NOT contagious! (praise God!)

Depending on how good her CT Scan looks tomorrow and if they can definitely identify this is indeed the bacteria then they will decide what to do again tomorrow. The specialist told us that tomorrow is "a decisive day". PRAY FOR GOOD RESULTS. we requested that they allow us to go home and do home health with the IV or even come back up here every day for treatments (anything but sleeping here please!)
They said that was a possibility and it would depend on her scan tomorrow morning.

She said maybe they could put a "pic line" (not sure of the spelling) which is like a port for the IV in and out of her so she wouldn't have to stay. so we will pray for that.

i will let you know more as we know!
thanks,
Julie

I am having email problems - but i wrote this to everyone this morning - since writing it we have found out they will not do Mia's new CT scan until Tuesday and that her culture findings so far are very rare. Hopefully this will not end with some devastating news, but only news of a specifically designed antibiotic for HER and the end of this mess!
I apologize if you have gotten the email below more than once:

Subject: Prayers for Mia - Sunday morning

Hey Everyone!

I wanted to give y’all a quick update so you could better know how to pray for Mia today!
First off – thank you to everyone for your overwhelming generosity in your visits, time, meals, prayers , sweet gifts and I could go on and on! I am humbled and just so in awe of what an amazing group of people you are and I thank GOD for letting me a part of such an amazing family of God!
THANK YOU EVERYONE for your constant prayers for my sweet baby and for all of us!
She is seemingly better and better every day! Monday they will give her another CT scan to check on all the abscesses and make sure the huge one they drained is gone and that the other ones (at least 3 that I remember seeing on the ct scan when they showed me – but I almost passed out) anyway – pray that they have in the very least not grown… but that they have shrunk… or even disappeared! That is unlikely, according to the doctors – they will take a long time - but we love a God of miracles, so we can ask!
I feel that depending on how she does outwardly (eats well, plays, is normal acting and no fever) and if that CT scan shows us a good report, maybe they will release us on Tuesday! This is my prayer. Last night I asked if she wanted to go for a walk and she said “No, I want you to hold me” but I told her there was a huge fish tank down the hall… so she picked out some pretty pajamas, asked me to fix her hair and then gathered up some of her balloons and a flower and we had a little parade in the hall! She was so joyful to be up and out of that room for the 1st time in 5 days! I got some adorable pictures! She is a trooper! She really wants to go home, so we hope we will hear those words much sooner than later! They lowered her IV fluids from 40 to 10 last night – she is actually drinking on her own more than a few sips here and there. The first time in THREE WEEKS! And this is the first she has been fever free in 6 weeks+! AWESOME!!
Again, thank you so much for everything and I miss you all and so does my sweet Mia – as going to church and dancing and singing and playing with her friends is one of her most favorite things to do!
Some day I will show her all the cards and tell her of all of the prayers and loves and emails and phone calls and visits and I know she will be amazed! Like her Mama always tells her “Everybody loves Mia!”. My sweet girl. THANK YOU THANK YOU!
I will be in touch Monday when I hear what the CT report says! (NOW WE KNOW IT WILL BE TUESDAY!!!)
Love and hugs,
Julie – Mia’s Mama

Subject: Thursday update on Mia
Thursday afternoon update:

We saw 3 different doctors today (the hospitalist, the pediatric ENT and the infectious disease specialist). All 3 are in agreement that Mia needs surgery tomorrow.

The big abscess (2.75 cm x 1.5 cm) has not gotten smaller with the meds and the new Ct scan showed that it did indeed need to be surgically removed. They have also discovered she has several other smaller abscesses. They are too deep to be removed (for fear of injuring nerves or anything else) so please pray that the antibiotics will clear them. The ENT thought we would need to be here at least 5-7 MORE days after surgery to make sure everything was healing and looking better. The hospitalist seemed more optimistic with 3 days after surgery (Monday earliest).

Mia is NOT happy to be here, she wants to go home so badly. Thankfully everyone here is very cheerful and continues to bring her presents and movies and toys to play with.

She will be in quite a bit of pain after the surgery tomorrow - but they will do their best to give her pain meds. I am sure this will not be easy to watch, so please pray for her. the incision will be inside her mouth/throat (tonsil area i think).
I almost passed out while the ENT was showing us the CT scan and talking to us about it all! Ah... i obviously did not inherit my mother's NURSE genes! HA!

thanks for all you are doing on behalf of our sweet little girl!
love to all,
Jules

Subject: The latest on Mia
Wednesday Afternoon Update:

The doctor informed us today that they expect mia to be in the hospital for 5-7 days. This is very overwhelming, but we will take it one day at a time and pray that God has even better (shorter) plans for us!

They are ordering another CT scan of her neck and head with dye to better see what is going on in there, they also are getting us an ENT consult in case they need to do an emergency surgery to drain the abscess. She is still feeling really lousy except for the small relief the Motrin gives her from time to time.

We are grateful to the wonderful hospital staff here at the Children's Hospital - everyone is super nice to Mia and helping her feel comfortable.

They are waiting for more results of all of the other bloodwork to come back as well. Her white blood counts were down today, so that is great - as well as she does not have anything abnormal there (no indicators of something serious like cancer). Her c protein (or something like that) is supposed to be at a 3, is up to 48, but came down to 46 today, so pray that it continues to go down.
They also mentioned because of where the abscess is in her neck, makes it dangerous, if it is to grow anymore (yesterday it was 2cm x 1cm - a pretty good size for her tiny 3 year old neck!) it could hit an artery or something...

anyway - that's what i know for now - don't you love all of my medical jargon?! Thank you so much for lifting our little princess in prayer and for all of your offers for helping with childcare, food or packing (yes, we are supposed to be moving in 10 days!!!)

You really are a wonderful group of friends and family and we are so thankful to have you in our lives!

hugs and blessings to you all,
Mia's Mama!

Sent: Tuesday, September 11, 2007 4:02 PM
Subject: Re: UPDATE: Special Prayer Request for My Mia

Hello everyone - this is Phil. We took Mia in to see a Pediatric Infectious Disease Specialist this morning. She poked and prodded for about 20 minutes before telling us we needed to take Mia to the Children's Emergency Room for a spinal tap among other things. After another full round of questions, x-rays, bloodwork and a CT scan, the ER Pediatrician found an infected abscess (about 2cm) in her neck behind her throat. The good news is that they know the problem and she didn't have to have a spinal tap. The bad news is they are admitting her to the hospital and she will need to stay there at least two days for them to treat this with IV antibiotics. At the same time, the Infectious Disease specialist is continuing to run numerous tests to make sure this is not just a secondary problem that is hiding something else. Mia is tired and worn out, but is taking this like a champ. Her Mama has her convinced that she is being pampered in a 5-star hotel/spa and that they are on a special vacation together.

We are very glad that the doctors found the problem and now have a course of action. We appreciate your thoughts and prayers and will continue to keep you updated as much as possible, although we don't know if we have internet access at the hospital.

Thanks,
Phil (and Julie)

Sent: Friday, September 07, 2007 1:12 PM
Subject: UPDATE: Special Prayer Request for My Mia

I stopped by the pediatricians office today to see if they had Mia's lab results and spoke directly with my doctor and...

PRAISE GOD! Mia's blood counts and cells were all NORMAL and she does NOT HAVE Leukemia!!! :)
She does not have mono either. If the high fever (or fever in general) is still here on Monday, he will do a complete work up of everything under the sun to see what it is that is making her so sick.

But what an enormous RELIEF to hear my little girl does not have cancer! Anything from here, seems like it should be a breeze... God is so good and so faithful. I am beyond thankful!!!

Please continue to pray her fever will go away or that they will figure out what she has. We are so thankful to you all for your prayers!
thankyou thankyou thankyou!!!!!!!!!

love and hugs,
Julie & Phil

Sent: Wednesday, September 05, 2007 5:16 PM
Subject: Special Prayer Request for My Mia

Hey everyone,
sorry to send out a big group email, but i have a big request for our family.

Mia has been sick with fever for several weeks now and it has been VERY high (103-104) for the last 7 days. We saw the dr. again today (fourth time in less than 2 weeks!) and he is doing some testing to see if maybe she has mono, but in the midst of a myriad of words he mentioned LEUKEMIA... and it being on his list of concerns. Never in my life did i think i would pray for my child to have mono! He told me not to panic (yeah right!) but that it was just something we would test for if these other things were negative.

Anyway, My head is spinning and I am sure this email isn't very well written! I am trying to rest in God's hands and "be anxious for nothing, but in everything, make my requests known to God" as I know He loves her even more than I do (unfathomable!). So I just beg you to please pray for Mia's little body to heal and for nothing horrid like this to happen to her.

Thanks so much! We are so thankful for our circle of Godly friends!
we love you!
Julie and Phil

Girls Night!

Mia and I had a girls night last night and she had so much fun playing in all the makeup that some of our church friends gave her! On a normal day, i would not normally let her play with makeup, but desperate times call for basically whatever she wants! haha! So we had fun putting makeup on each other, fixing our hair, painting our nails and watching Cinderella!

Emma Cake!

Mia's good friend Emma Kate (lovingly referred to as Emma Cake) came to visit yesterday with some of our best friends Jenny and JD (and baby Addison).

Mia in the hospital

see pictures of the first 6 days here:
http://share.shutterfly.com/action/welcome?sid=2AasXLFy3ZMWM7&notag=1

RIBS! and playing out in our new backyard!

"I'm All Packed Mama!!"

Two weeks ago Mia called out to me "I'm all packed Mama!!"

i came into her room to discover that she had packed 3 of the empty purple bins with toys, pillows, dolls, some clothes and some panties, the stool to her piano and the ottoman to her chair! She was really putting some thought into what she would need!

This girl is so adorable! i love it!

Please keep little Miss Mia in your prayers. She has been suffering with on and off fever for over a month now and the last 12 days she has had a fairly high fever and been pretty lethargic. Last week they sent us to have her tested for Leukemia and it was an enormous scare, THANK YOU JESUS that she does not have cancer. I will take her in tomorrow for even more extensive testing to get to the bottom of why her fever will not go away. This poor girl is so tired of being sick and just wants to feel good so she can play and have fun all the time again!!