Saturday, February 27, 2010

Home Sweet Home

Ahhhhh, rest has come and we are so happy to be HOME!!!  We crawled into bed last night shortly after our arrival home, and Chrissie squealed with delight as she cheerfully exclaimed, "Ahhhh, I LOVE this bed.  It's so comfy!!!"  (I kid you not...those were the exact words of our precious daughter who has only been home 4 months and speaks amazing English!!!)  Chrissie slept peacefully through the night in our own bed without any IV, blood pressure, or oxygen alarms going off.  No one came in to take vitals or force Chrissie to do anything but sleep.  She slept like a rock.  (I woke throughout the night to check on her, even though she was sleeping right next to me, but I just needed to make sure she didn't have fever and that her breathing was OK, and it was all good.)  Ahhhh, home sweet home!!!

Chrissie is still sick, but we are able to handle things at this point on our own.  We have very specific instructions of what to watch for, when to take her to the ER, etc., and Chrissie is on all sorts of good meds to heal her.  She continues to receive breathing treatments every 4 hours as well as a strong antibiotic (to fight pneumonia) and steroids to reduce respiratory inflammation.  She's still coughing, but not nearly as much as she was just a couple of days ago.  She's still irritable and needs lots of rest, but it is WONDERFUL to have her home where she isn't traumatized by the simple presence of medical staff.  Chrissie also feels so relaxed in our home with her brothers and sisters and the familiarities of Patterson life that bring her peace and joy.

It will probably be another week until Chrissie is back to normal.  She needs LOTS of rest, but she hates to be in bed.  She doesn't have energy to play, so we're trying to entertain with quiet activities and lots of naps.  Tonight was the first night that Chrissie has eaten in a full week.  She LOVED the homemade crispy tacos that I made, along with chips and queso.  This is the first "real" meal that Chrissie has willingly wolfed down...EVER!  (She didn't even like "real" food in Serbia...just chocolate! :-)

Please continue to pray for Chrissie and a quick restoration for her.

Friday, February 26, 2010

We're on a...

JAIL BREAK!!! Headin' home now. WOOHOO!!!

:-) Sent to you "on the go" via Lorraine's cute pink phone! Gotta love it!

Chrissie is Improving...

The head pediatrician at Methodist Children's Hospital informed us that she's hoping to discharge Chrissie late this evening or maybe tomorrow, depending upon how Chrissie does today!!!  She has remained fever-free for two days now, and her lungs are sounding mostly clear.  She's still sick and super irritable, but the pediatrician thinks we can handle this at home where Chrissie will get better rest and be less stressed.

Chrissie was weaned from oxygen throughout the night last night, and she's been completely off oxygen since 5AM.  Her oxygen sats are remaining stable at her normal 78%, resting rate without O2.  That is super news.  If Chrissie is able to maintain that oxygen sat throughout the entire day AND if her lungs stay clear (with breathing treatments stretched to every 4-5 hours), then maybe, just maybe, we'll be heading home tonight!!!  (Which would be awesome since Parker has a rodeo tomorrow and Sawyer has his first baseball game, too.  Atleast Matt would be able to attend those while I stay with Chrissie in a much more "Chrissie-friendly environment...our home!)  Chrissie is still being given lots of meds, but they can be given orally instead of through her IV.  It's a long-shot to think we might be going home tonight, but the thought of Chrissie resting peacefully in our comfy bed in our cozy home without anyone else coming in to traumatize her is like a dream that I would so love to see come true if it is God's will.

Chrissie had a slightly better night last night with more rest, but that simply means that she slept in 1-2 hour increments without screaming, wailing, and flailing instead of 10-20 minute increments in comparison to her ICU night!  The poor nurses, respiratory therapists, and even the cleaning crew end up in tears when they come into our room and see how traumatic their presence is for Chrissie.  It's really sad.  Chrissie has been in the hospital here before for heart procedures, and we've stayed by her side each time without leaving her, but she's never stayed this long.  Every trip to the hospital has been traumatic for Chrissie.  I simply don't know how she's going to make it through her open-heart surgery recovery!!!  One thing that's good about this stay is that we'll have many of the same nurses caring for Chrissie when we return for open-heart surgery, so they'r'e already making mental notes about Chrissie's traumatic responses.  (The hospital is GREAT and they always allow me to administer breathing treatments, take blood pressure, take her temperature, administer her oral meds, etc., but the simpe presence of hospital staff totally freaks Chrissie out.)  The "Child Life" team has been bringing her toys, movies, and they just delivered her a hand-made precious blanket.  They are working hard to win the trust of this precious angel!!!

Oh, and speaking of angels, apparently we're (Matt and Lorraine) now being referred to as angels around here.  The nurses pass along patient notes at each shift change, and each new nurse thanks us for adopting Chrissie and helping orphans, and they keep telling us we're angels.  The part that they don't understand is that they have it backwards; we are the ones blessed by angels.  What better gift could one receive than the gift of a precious child?  Our children are angels sent straight from God.  We're simply the parents; not angels by any means.  "Children are a gift of the Lord; a reward from Him."  Psalm 127:3

Thursday, February 25, 2010

The Princess and The Virus

Metapneumovirus.  Ever heard of it?  Neither had we!  The hospital has been running tests and lab work for all kinds of illnesses, viruses, etc., and the one thing they've discovered is that Chrissie for sure has Metapneumovirus.  Here's a little blurb about it taken from eMedicine:

"A complete physical examination may reveal rhinorrhea, congestion, cough, tachypnea, wheezing, or rales. A high fever with myalgias has been described in some patients. Respiratory failure may ensue, requiring mechanical ventilation."

Sounds exactly like our Chrissie.  Apparently Metapneumovirus is quite similar to RSV and flu, but different enough to make those two tests come back negative.

Chrissie continues to remain stable in intermediate care, although she is still on continual oxygen as well as IV fluids.  (She has been fever-free for over 12 hours now without any fever reducing meds.  She's also still being given steroids, antibiotics, and a couple of other IV meds along with major respiratory therapy such as breathing treatments every two hours with a special one hour long treatment every 12 hours.  This means they're doing everything possible to get Chrissie well so she can go home, but Chrissie does NOT like it!!!  (And we'll probably be here for a few more days, so pray Chrissie will eventually calm down about simple routine procedures.)

In fact, Matt has nicknamed Chrissie "The Brown Hornet".  Better not let her small stature and big brown puppy dog eyes fool ya...Chrissie will come out of nowhere and sting ya, just like a hornet, if you're not on guard!!!  She is one fiesty girl when it comes to medical staff!!!  The moment anyone walks in the door to her room, she immediately goes into defense mode.  Chrissie gets her "stinger" out and lets everyone know she's madder than a hornet!!!  The staff have been quite shocked to see this precious little brown-eyed beauty react with such magnitude to a simple temperature reading or listening to her lungs/heart.  Not one single thing has caused "real" pain, but one would think Chrissie is being brutally attacked every time a nurse (or anyone whom she doesn't know) enters the room, even for simple things like a temperature reading.  There's lots of screaming, kicking, thrashing and wailing coming from our room anytime there's medical staff anywhere in our room. 

Everyone knows our little princess here, and they all know the girl gets what she wants!!!  (Although she still hasn't found a way to get "pretty" clothes...the polyester blue hospital gown isn't cuttin' it for Princess Chrissie, but she's still got it on, bless her heart.)  The bed's too cold, Chrissie's too hot, the pillow is too sweaty, the IV bandage is too big, the finger oxygen oximeter is too sticky, and the list goes on and on and on, and, although we still haven't found the pea under the mattress, Princess Chrissie is sure there's one hiding that we haven't yet discovered!!!  (We searched high and low for that pesty pea that causes so much irritibility, and we discovered it's not a pea at all, but a virus called Metapneumovirus, and it causes much the same irritation as The Princess and The Pea!)

Stephanie brought the kids today to visit Chrissie, and my mom ("Nana") stopped by as well.  These visits brought smiles to Chrissie's face, and she enjoyed playing with the Playdough and other toys my mom brought for her.  She made everyone pink playdough apples, and she told everyone where and how to sit (and sometimes she even gave instructions of what to say and how to say it!) in order to make Princess Chrissie happy.  The siblings were happy to see Chrissie and we were so grateful for the two hours of hospital joy Chrissie experienced this afternoon.  (Thanks Stephanie for bringing everyone!)

Yep, the princess knows what she wants and how to get it.  And we're blessed to be able to oblige.

Update on Chrissie 2/25, 12Noon

Chrissie was just moved to an "intermediate" room, out of PICU, but not in a "regular" room yet.  She's really traumatized by hospital staff.  She hasn't gotten any other needles/sticks, but every person who walks in the room scares Chrissie to death and sends her into an emotional crying fit.  In PICU, someone comes in every 30 minutes or so, they take a variety of stats every 1-2 hours, she gets breathing treatments every 3 hours, they have to gather secretions from her nose for testing every now and then, etc., so Chrissie didn't get much sleep last night.  It seems like every time she settled down, another person came in for something else and stressed her out to start the trauma process all over again.

In the intermediate room, she only has to have stats taken every 4 hours, so hopefully she'll be able to settle in and rest some today.  She's still coughing quite a bit, but her fever isn't staying away without medication.  They still don't know the cause of this respiratory illness, and tests are still being run so we'll keep y'all updates as we get results.

Thanks for praying!!!

Wednesday, February 24, 2010

Update on Chrissie 2/24, 11PM

Chrissie is in PICU at the Methodist Children's Hospital in San Antonio.  She is doing much better right now, but she'll probably be here for a few days.

Chrissie had a rough day filled with coughing, fever and no rest today.  I decided to take her to our pediatrician again this afternoon to see if she might have pneumonia.  Her oxygen sats were at 60%, so off we went to the ER.  We wanted to go to Methodist in SA since that's where Chrissie's cardiologist is.  (Matt was on his way to Wimberley at the time, so we hooked up with him and Chrissie and I jumped into his truck.)  Shortly after we left, Chrissie went into respiratory distress in the truck.  We called 911 and a Wimberley EMS met us at Hays City Store in Driftwood.  By the time they arrived, Chrissie had stopped coughing and was able to talk.  Her oxygen went back up to 70% on its own.  The Wimberley EMS people can't go to San Antonio, only Austin, so they gave us a tank of oxygen along with a peds mask for Chrissie, and sent us on our way in Matt's truck.

Chrissie did OK on the ride, and when we arrived at the ER, they ushered us through STAT!  They immediately put Chrissie into a trauma "revival" room and a team of about 10 staff flooded through the doors!!!  Chrissie announced that she had to poop, so we left the room with an oxygen tank to go to the restroom, LOL!  The staff looked shocked that I left them all hanging to take Chrissie to poop, but if she had pooped in her pants, they never would have heard the end of her wailing in distress!!!  So, after Chrissie took care of "urgent" matters, back to the trauma room we went.  Chrissie had a fever of 103.7, along with major coughing and an oxygen sat rate of 64%.  Her lungs were getting very little air and were crackling.  They ended up giving Chrissie an IV with steroids, an IV antibiotic, oxygen, a one hour long Xoponex breathing treatment, and a chest x-ray.  They drew blood and tested for RSV and Influenza, both of which were negative.  They're currently testing for about 10 viruses and such, but it will take a few days to know what's causing this.  The chest x-ray showed no pneumonia, but they're suspecting it might actually be pneumonia after all. 

Chrissie is doing so much better now.  They're keeping her on oxygen, steroids, antibiotics, and breathing treatments.  She will remain in PICU until they're able to figure out what's causing all of this and get her stabilized. 

Dr. Porisch (cardiologist) is here, and she said they won't be able to do surgery March 22 because this is such a severe respiratory illness.  So, we're looking at mid-April for surgery now.

Through all of this, Chrissie has remained a happy girl!!!  She handled the trauma of the ER like a champ (better than she did Saturday's pre-op blood draw!); it all happened so swiftly that she didn't have a chance to really freak out.  (Yes, she cried and was scared, but Chrissie is one brave girl! She kept saying, "I love my mommy, I love my daddy!")  So sweet!  Chrissie even smiled through her breathing mask, and the staff laughed at our little princess who refused to wear the strap of the mask, so Mommy had to hold it for her for an hour, and both Mommy and Daddy tickled her arms and feet throughout the process.  It was "Spa ER"!!!  As extremely ill as Little Chrissie is, one wouldn't know it by looking at her. (Although she was very blue/purple, but still smiling!)  She's a fighter, that's for sure!!!

Stephanie is holding down the fort at Forgotten Saw Ranch.  She and her girls are an amazing part of God's plan in our lives.  We are so grateful for them and all they do to support our family.  No matter when, where or how, The Halls are always ready to serve!!!  Thank you Stephanie and Emily and Samantha, too!  We love you!!!

PS  Matt and I will be staying round-the-clock with Chrissie since she's concerned about our leaving her.  God is using this to show Chrissie that we will NEVER EVER leave her, just as our Father promises to never leave us.  Faithfulness.  God is good.  Thank you, God, for allowing us to show faithfulness to Chrissie, and thank you, God, for your faithfulness to us. 

On the way...

to the hospital. Please pray for Chrissie. Her oxygen sats were at 60% when I took her back to pediatrician this afternoon We are heading to Methodist San Antonio now.

:-) Sent to you "on the go" via Lorraine's cute pink phone! Gotta love it!

New Prayer Button for Chrissie

If you have a blog, would you please copy and paste the new "Pray for Chrissie" button onto your blog?  I had to change the code because it wouldn't update, so if you have the old button, you'll need to change the code to the new one.

Here's the new button (let me know if you have any problems with it please):


New Surgery Date...

March 22, 2010. (This is, of course, dependent upon Chrissie's health.)

Please continue to be in prayer for Chrissie. She's just miserable right now. She had a fever of 104 in the night, but it came down with Tylenol and is hanging out around 100-101 now. Chrissie's struggling with this horrible cough that just doesn't want to go away no matter what we do. If this were one of my healthy kids with this virus, I would be worried, but with Chrissie's suppressed immune system, heart and lung problems, it's really hard to sit back and watch this. I'm not used to caring for a sick heart patient whose normal resting oxygen sats are in the 70's, so I'm learning as we go. Not easy.

Thank you for praying; that's what we need most. And some good sleep! :-)

Tuesday, February 23, 2010

Update on Chrissie 2/23, 5:45PM

Chrissie is hanging in there. Her fever is hanging out around 99 or 100, and I’m not giving her any Tylenol or Motrin, hoping that the fever will fight off the illness. The nebulizer treatments are helping tremendously, but we are only allowed to give those every 4 hours. Her main struggle right now is with her cough. Our pediatrician doesn’t want to completely medicate the cough 100% of the time because we want her to cough up any mucous and have a productive cough so she doesn’t get pneumonia. However, when she coughs, she doesn’t get adequate oxygen and turns blue/purple. So, if her coughing goes into a fit, this is a big deal. I think we’ve been able to find an acceptable balance between the nebulizer, cough meds, cough drops, and productive coughing. I am able to let her cough for about 2 hours, after a nebulizer treatment. Then I give her a 4 hour cough syrup, which manages her cough for about 3 hours. She’s able to rest during that time. Then we’re able to give another nebulizer treatment, and repeat the process.
Blue toes (this is normal)

Nebulizer treatment in the night.

Chrissie slept for a good 4 hours without coughing last night, then we started the process of learning how to manage things. She was able to take a good 3 hour nap today that was totally cough-free. When she woke from her nap, Chrissie’s first words were, “I sick. I need more chocolate.” That girl CRACKS me up!!!
So, what did I do?!? OF COURSE, I gave the girl some chocolate! (I did have her eat a sandwich first.)
Yummy…brownie batter, my FAVORITE!!!

Chrissie was a happy girl as she licked the brownie batter from the bowl. Chocolate does wonders for a sick little girl!
Chocolate kisses from Chrissie!
(You can see a little spunk in this photo, which I LOVE!)

Big snowflakes in the Hill Country of Texas today!

Monday, February 22, 2010

Update on Chrissie 2/22, 8PM

I took Chrissie to our pediatrician this afternoon after a medical-field friend encouraged me to beg for an appointment today since her breathing seemed labored.  The pediatrician gave her a nebulizer breathing treatment, and Chrissie's breathing improved.  He said her breaths were very short as he listened to her breathe with his stethoscope, but they got deeper within seconds of the breathing treatment.  He let us borrow a nebulizer machine, and we got a presciption for Xoponex (Levalbuterol) with instructions to give the breathing treatments every 4 hours as needed.  He also instructed me to call 911 for an EMS ride to the ER if Chrissie isn't able to breathe well at any time because the EMT can give her oxygen on the way to the hospital.  Our pediatrician isn't sure of the source of the respiratory issues and fever, but he said he's seen a lot of RSV and flu right now.  She could have picked up either at the hospital Saturday when she went in for her pre-op visit.  If her fever gets to 102 or higher, he wants to treat her with Tamiflu.  RSV doesn't have any treatments, other than using the nebulizer (and hospitalization if it gets severe), so we just have to wait it out.

Please pray for Chrissie's health.  Pray that her cough and fever will go away, and that she won't have any breathing issues.  It's really hard for a child with a resting oxygen sat of 75% to have any type of respiratory issue.  Thank you!

The Plan...

And we thought we had it all figured out, huh?!?  That "surgery schedule" I posted yesterday was just to psyche everyone out, like I had some control or something!!! :-)

We took our RV to San Antonio Sunday night and slept in the parking lot of The Methodist Hospital, as "planned".  We woke up this morning at 4:45AM to get everything ready for Chrissie's hospital registration by 5:30AM.  Chrissie woke up smiling and excitedly exclaimed in an unusually raspy voice, "I ready get my heart fixed."  Then she let out a big, yucky, wet, deep cough.  UGH!  The cardiac surgeon stressed that if Chrissie woke the morning of surgery with any sign of illness, even just the sniffles, that we would need to cancel her surgery. 

I went to hug Chrissie after she coughed, and her back felt really warm.  I had brought a thermometer with me, so I stuck it under her arm to determine if she had fever.  (She wouldn't let me put it under her tongue.)  Sure enough, she had 101.4 (100.4, but I added a degree since I took it under the arm).  I called the hospital staff that the surgeon had given me contact info for incase of illness the morning of surgery, and I explained to the sweet registrar what was happening.  She called the cardiac surgeon, then we received a return phone call letting us know that the surgeon was not comfortable performing surgery with Chrissie having these symptoms.  He canceled the surgery and asked us to call his office once it opened to reschedule.

In the meantime, I was texting our beloved cardiologist, Dr. Porisch, to let her know and get her opinion on things.  She said we would need to wait atleast 4 weeks to reschedule as it's top priority for Chrissie's immune system to build back up and be 100% healthy and strong.  Dr. Porisch also let us know that the homograft should be fine for another month.  That's a relief.

We called our pediatrician for an appointment to check out what's going on with Chrissie.  He couldn't fit Chrissie in until tomorrow, Tuesday, so we took that appointment for her to be evaluated to see if there's any infection we need to deal with.  Chrissie has not been sick one single day since she's been in Texas, but I know she had a lot of upper respiratory infections and pneumonia when she lived in Serbia.  With a resting oxygen saturation rate of 75%, this can be really dangerous.  As the day has progressed, Chrissie's cough has gotten worse, and I'm noticing some wheezing here and there.  She's asleep now, but I'm really glad we have an appointment with the pediatrician tomorrow.

We are waiting for the cardiac surgeon's office to call us back to let us know what new surgery date we might be looking at.  I will let everyone know just as soon as I know, but we are sure it will be atleast a month before we're able to reschedule, possibly longer.

For those who signed up to pray at a specific hour and/or bring us meals during this time, we ask you to save that slot and just reassign it to the new dates once we receive them.  We are so blessed to have so many prayer warriors and so many people blessing our family with meals.  Your support means the world to us, and we are so very grateful.

PS  Thanks so much, Amy, for updating our blog for all of Chrissie's mighty prayer warriors!!!

Surgery cancelled

Hey there everyone. Thank you so much for praying for Chrissy and her sweet family. It's Amy here from I just spoke to Lorraine and she doesn't have internet right now to let everyone know that Chrissy's surgery has been postponed. Chrissy woke up today with a 101 degree temperature and a nasty sounding cough. They are taking her to see her pediatrician tomorrow but the surgeon didn't feel comfortable going forward with her surgery today. It will be atleast one month before they can reschedule her surgery. Lorraine promised to keep everyone updated.
Please continue to pray for Chrissy and her entire family. I can only imagine how stressful this must be. But one thing I have learned about this precious family is that they are trusting God and His timing completely.

Love you sweet Chrissy!!!

Sunday, February 21, 2010

Surgery "Schedule"

Many of you have asked for a "day of surgery schedule", so I'm going to post a "rough draft" of what we "think" will occur:
Sunday, Feb. 21, 8PMish: Matt, Lorraine and Chrissie will travel to San Antonio in our RV and "camp" in the parking lot of Methodist Children's Hospital.

Monday, Feb. 22:

o 5:30AM, Chrissie must check in at the hospital

o 5:30-7AMish, Pre-op “stuff” (meet with various doctors, get into gown, anesthesiologist will give Chrissie a “cocktail”, etc.)

o 7AMish, Chrissie will be taken to the operating room. (We will get to walk with her all the way into the operating room and stay with her until she is asleep. She’s normally not traumatized by this, and she will not get any needles until after she is asleep. We’re the ones (Matt and Lorraine) who will be traumatized as we say goodbye to our baby girl!!!

o 7AM-8AMish, Prep for surgery. (Chrissie will be under anesthesia for all of this as the team of doctors prepare everything necessary for Chrissie’s surgery. She’ll be hooked up to a “life machine” and have lots of tubes and electrodes and “stuff” hooked up to her. The “life machine” will keep her alive. It will do her breathing and keep her body alive while her heart is not able to function during the surgery.)

o 8AMish-???, Open-heart surgery. We really don’t know how long this will take. This is not a routine surgery. This is not normally performed on 4-year-olds. (This is normally done within the first few hours/days of life as one normally cannot survive without open-heart surgery when one is born with Chrissie’s heart conditions.) The surgeon told us anywhere from 4-8 hours for his part of the surgery, and then the surgical team will need to work for as long or longer to stop the bleeding. So, Chrissie may be out of surgery anywhere from Noonish-8PMish. We just don’t know.

o After Chrissie’s surgery is completed and they have stopped her bleeding, she will be moved to PICU. She will remain on the life machine, she will be intubated, and sedated. At this time, Chrissie’s body will be needing to learn to operate again. Her heart will need to learn how to pump (it’s never done that!), she’ll need to get to a point where she can breathe on her own, her oxygen saturation will need to stay in a “normal” range, and her blood pressures will need to stabilize, amongst other things. This is a time that we don’t want fever, and of course we don’t want any complications. (One possible complication that the surgeon explained is that once her lower ventricle fills with blood (the one that they’re going to install the cadaver pulmonary artery into), it may not know what to do with it and instead of pumping it out (which it’s never done), it could swell with blood and her heart could literally explode. They’re installing a special “pop-off” patch over the hole between the lower chambers so that it will pop off if the pumping ventricle doesn’t do its job correctly so that her heart won’t explode.) We want Chrissie to be able to stay sedated as much as possible after the surgery so she’s not agitated by all of the tubes and freaked out (and boy, does she FREAK out in hospitals, understandably, after spending her first 10 months of life alone in a hospital, abandoned by her first family who couldn’t afford to care for her condition), but sometimes too much sedation affects blood pressure in a negative way, so it’s a careful balance.

o Chrissie will remain in PICU for about a week, more than likely, unless there are complications with getting everything to work correctly. After everything stabilizes, she’ll be able to move to a regular room and then she’ll be able to go home after they are sure everything is going well, she can eat and drink on her own, pee/poop on her own, etc. We were told to “expect” around 2 weeks at the hospital, but it could be longer or shorter, depending upon how Chrissie’s body reacts to all of this “re-plumbing”.

o For those who don’t know, Chrissie doesn’t have a pulmonary artery or valves, her lower ventricle (the most important one) doesn’t pump blood, she has no blood flow from her heart to her lungs, she has many “kinks” (think kinking a garden hose) and stenosis (narrowing) in her pulmonary vessels and veins where blood must get through the tiniest of openings, she has a 75% oxygen saturation rate (resting), she has a huge hole between the lower to chambers of the heart, and she has a God-made blood flow system of vessels in her neck that He created to keep her alive (that no one else has), but it works independently of the heart and could fail at any moment, plus it’s only giving her ¾ of the oxygen her body needs. (She could die of heart failure at any moment if she doesn’t have this surgery.) It’s a MIRACLE beyond all miracles that Chrissie is alive. There are many possible complications with this surgery, but it is necessary in order to give Chrissie a “normal” life. Right now Chrissie cannot run and play or sing or swim because it takes too much energy and her oxygen sats drop. She is looking forward to being able to be a “real” kid. She talks often about being able to run and not say, “I tired.” What a joy it will be to see our little princess play with her siblings without hesitation or reservation. Jehovah Rapha (The Lord our Healer) is in charge, and we lift our precious daughter up to Him, the Great Physician.

Thank you all for praying!!!

Saturday, February 20, 2010

Update on Chrissie and the Fam

Just a quick note to let everyone know we're home safely and everyone has stayed healthy, praise the Lord! (I haven't had a single spare minute to update, sorry!)  Thank you all for praying for us.  Chrissie had her pre-op registration visit at the hospital today, and she was a total wreck.  I brought all of our daughters and my friend, Stephanie, for moral support for Chrissie, as I knew she'd fall apart at the sight of a needle.  (She had to have a few viles of blood taken along with a chest x-ray at her pre-op visit today.)  Everyone ended up in tears as Chrissie kicked, screamed, wriggled, and hollered, "MOMMA NO LEAVE ME!!!"  I had to explain to the 4 nurses that Chrissie's mom abandoned her at the hospital in Serbia when they discovered her heart problem.  Her hands are full of scars from IV's.  This precious girl has many scars, inside and out, yet she's the most joyful person I've ever met.  Except when it comes to needles.  It was a very tough day emotionally for everyone, but we wrapped up the day with chocolate and pedicures for everyone.  Chrissie got a manicure and pedicure, which has been a dream of hers since the day we met her, and she was treated like royalty at the nail salon.  (God hooked her up with a nail tech whose neice has heart problems, so the nail tech had an extra soft spot in her heart for Miss Chrissie.) 

Anyway, wanted to let everyone know that we're doing well.  We will go to the hospital tomorrow night (Sunday), and we'll spend the night in our RV in the hospital parking lot (Matt, Lorraine and Chrissie).  Chrissie will be admitted at 5:30AM Monday morning. 

If you want to sign up for a specific prayer time slot, please contact Julie Jacobsen at and if you'd like to provide our children with a meal while we're away at the hospital, please contact Brenda Cavazos at for our Care Calendar login info.  Those are our two main needs right now, and we would be so blessed by these two acts of service for our family.

I'll do my best to keep everyone updated in a more timely manner as we embark upon Chrissie's heart repair.  Thank you!

Monday, February 15, 2010

Day 5, Way 5: Chrissie’s Make-A-Wish Disney Dream

Monday, February 15, 2010
The Shirt: Disney Variety
The Site: ,
The Scripture: "A Father to the fatherless, a defender of widows, is God in His holy dwelling.  God sets the lonely in families."  Psalm 68:5-6a
The Story: Today was Mom's day to recover from the violent stomach virus, so I couldn't even get the shirts organized for today. The kids were begging to wear their new Disney shirts, so I was happy to tell them that they could. (I could hardly even speak, much less care about what shirts everyone wore today!!!) I would like to draw attention to the amazing place where we're staying, called Give Kids The World, and the awesome wish-granting agency, Make-A-Wish. Please visit both of their websites to learn more about these organizations and how they're making a world of difference in the lives of ill children.

Our Day 5 Make-A-Wish Adventure, Monday, February 15: Matt and the kids played around GKTW this morning, then ate lunch and headed out to Epcot. I couldn't join them as I'm still recovering from this horrible stomach flu. It pained me to have to miss this outing with the family, but I tried to get up and get ready to go with them, and there was just NO way. The kids were SO sweet as they told me that they'd rather stay home if Mom couldn't go, but I encouraged them to go without me. Matt had to convince Sawyer and Mattie that I truly wanted them to go without me; isn't that sweet?!? They all headed out the door after lunch, and I crawled back into bed to recuperate.

The front desk called to check on me at 4PM, and the sweet lady told me that one of the local elementary schools was shut down due to an extreme stomach virus. She said that there were hundreds of children becoming suddenly and violently ill, and it got so out of hand, they had to just shut the school down!!! That must be what I got. Horrible stuff.

I would like to ask all of you to pray fervently that no one in our family gets this stomach virus, especially Chrissie. If she gets this, her surgery will have to be postponed. We will travel home Wednesday, and I cannot imagine traveling with anyone in the condition that I was in yesterday.

The kids and Matt got back from Epcot around 7PM. They all had a blast, and they each took turns telling me about all of the awesome simulated rides at Epcot. I am sad that I missed it, but so glad they got to go. Matt was a sweetie to take our big camera, 5 kids, a stroller, and all of Sawyer's food allergy safe foods by himself to Epcot. If it was anything like Magic Kingdom, I don't know how he did it!!!

Here are the photos Matt took today:

Disney Posts

Praise the Lord, I now have internet!!!  I have been blogging daily to record memories of our Disney trip, but I've not been able to post the blog entries since we haven't had internet.  Just a few minutes ago, I was notified that a wireless device (one of 2 in the village) had become available, so now I have internet.  I am going to post the blog entries for each day, but I may not be able to get photos to post just yet.  The internet is slow, and photos take a really long time, so I'm going to get the blog posts up first.  I'm going to try to backdate them all, so be on the lookout for new posts.  Thanks!

Sunday, February 14, 2010

Day 4, Way 4: Chrissie’s Make-A-Wish Disney Dream

Sunday, Feb. 14. 2010
Valentine's Day
The Shirt: Reece’s Rainbow
The Site:
The Scripture: “Once our eyes are opened, we can’t pretend we don’t know what to do. God, who weighs our hearts and keeps our souls, knows that we know, and holds us responsible to act.” Proverbs 24:12
The Story: Reece’s Rainbow is an adoption advocacy for special needs orphans, and they’re the organization who God used to bring Chrissie into our family. I chose to wear our RR shirts on Valentine’s Day because Chrissie is our special little Valentine, and I pray you’ll go make a donation to Reece’s Rainbow in honor of your special Valentine. (RR is also having a special Valentine fundraiser with merchandise you can purchase, but I couldn't get their shirts in time for our trip, so I made our own in honor of our special little Valentine.)  There are families out there just waiting with open arms to adopt a special needs orphan, but international adoption is ridiculously expensive and, in many circumstances, cost is the only thing standing between the orphan and his/her forever family. If you’ll go make a donation, no matter how large or small, you’ll help unite a special needs orphan with his/her forever family!!!  Go visit the RR site now and give from your heart.

Our Day 4 Make-A-Wish Adventure, Saturday, Feb. 13: Today was a beautiful day in Florida with sun shining and a temperature of around 65 degrees, thank you God!!! We read our family devo this morning, followed by the opening of Valentine’s cards from grandparents. The kids were SOOOOOOOOOOO excited to have Valentine money from their grandparents, and they were just itching for a trip to Wal-Mart to buy some souvenirs. (The kids figured out that they can get the same shirts at Wal-Mart for ¼ the price of Disney World.) The kids loaded up on shirts, and then we headed to Universal Studios.
Our Villa at GKTW

Today was such a gorgeous day, and we were afraid Disney would be as crowded as it was Saturday, so we opted for the “relaxed” atmosphere at Universal. We only made it to one of the two Universal parks on Friday (when it was raining so hard), so we wanted to visit the other park, where Barney has a show. (Chrissie adores Barney!)

I believe our day at Universal today was our most treasured day so far, as Universal really goes above and beyond for their Wish Kids. They make sure the Wish Kids have the BEST seating, and they treat them like royalty. With every show, they ask the Wish Kids to stay behind afterward so they can meet the characters.

We took Chrissie to the Barney show, which she LOVED. Throughout the show, Chrissie was singing and clapping and shouting, “HI BARNEY!!! HI B.J!!! HI BABY BOP!!!” After the show, Chrissie got to hug and talk to Barney, B.J. and Baby Bop. It was the cutest, sweetest thing ever as she wasn’t as scared of Barney this time. She wasn’t scared of Baby Bop at all, probably because Baby Bop is about the size of Mom. There were other Make-A-Wish kids there as well, and one boy stole our hearts. He was probably 16 years old, and he was severely handicapped, in a wheelchair, probably paraplegic with little mental capacity. He cried when he got to meet Barney, BJ and Baby Bop. He shook with excitement, and he tried so hard to express his thoughts about how much he loves them. It was deeply touching, and not one dry eye was in the group as we watched and cheered for this boy who was so grateful to meet his favorite characters. Chrissie clapped for him. We cried.
Chrissie with Ms. Peek-A-Boo, who introduced the Barney characters.

Chrissie got to ride another kid’s roller coaster with Mom (Woody Woodpecker), and she LOVED it. She LOVES to go fast, and her first words to me as she sat on the ride were, “Mom, I so cited (excited) cuz I get to go fast. It’s so FUN! I LOVE this!!!” That was before the ride even took off, and her enthusiasm exploded as she rode the ride with a gleeful happiness that we are most grateful for.

We then went to a show that introduced several of the famous animals from movies, and the trainers discussed how they train the animals for various roles. Chrissie enjoyed watching all of the animals perform tricks, and afterward, she got to meet the “talking” dog from Men in Black. She didn’t care very much about him, but she did oblige him with a photo.

Shortly after this, I began to feel ill. Very ill. Not the kind of nauseating illness from a ride, but the kind of ill feeling that made me know a very bad stomach virus was coming on…fast. I took Chrissie and the girls on the LONG hike to the rental van, and Matt stayed with the boys so they could ride one more ride. As soon as we made it to the van, I ended up getting very sick right there in the parking lot. Over and over. It was atrocious. Matt and the boys made it to the van, and we drove back to Give Kids The World, where I proceeded to get sick, again, on the side of the road. I made it into the villa, where I got sick again, and then I was deathly ill for the remainder of the entire night and into the next day. Fever, shaking, vomiting…the works. Not good.

Matt took the kids to hang out at Give Kids The World while I remained very ill in the room. I was so grateful for him and all he was doing to entertain the kids while I felt like I was going to die!!! They ate dinner, played, hung out, watched movies, and left Mom alone to wallow in my bed of illness. UGH!

Later that night, Chrissie bawled because Matt wouldn’t let her sleep with me since he was afraid she would get the virus, and then she wouldn’t be able to have her open-heart surgery on the 22nd. This was Chrissie’s first night since she’s been in our family to NOT sleep by Mom’s side. It was traumatic, but she made it through the night and woke to realize that Mom was still there. (She has fears that I will leave her.) We had purchased Chrissie a stuffed Barney, B.J. and Baby Bop at Universal, so she slept with those, in between Mattie and Daddy, her next 2 sleeping partner choices.

Please pray no one else gets this virus. It’s not fun, at all. In fact, I haven’t been that violently ill in decades!!!

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