Health Update for Our Big Girl

We went to TCH today for Aubrey's scheduled cardiology appointment.  We were SO proud of Aubrey.  We practiced what was going to happen yesterday and I think she felt prepared knowing what was happening.  She laid very still for the whole half hour of the test and didn't even mind all the stickies they put on her for the EKG.  As for the results: things haven't changed.  The numbers were all virtually the same as they have been.  It is good to know that she isn't getting any worse.  As far as the incident that sent us to the hospital in January--there is no new explanation.  It may just be some fluke that we never fully understand.  We will be back in 6 months for her next heart check up.  

These appointments always leave us with mixed feelings.  On one hand we are so thankful for how healthy she is and that things haven't gotten worse.  On the other hand we so much want to hear that she is healed and are reminded of the seriousness of her condition.  For now we just get to enjoy the wonderful girl she is and our life as a family--and do our best to trust our gracious Lord and not worry.

Update and Reflections

Aubrey had several tests during and after her recent (a month ago) hospitalization.  Everything they tested has come back and everything came back normal.  The tests they did are some of the ways that a metabolic or mitochondrial disorder commonly show up.  They do not conclusively rule anything out--except for the one that ruled out an overdose on her medication.  We were kind of hoping that was the answer.  So, we are thankful for the results we have--even though they haven't been able to explain things as of yet.  I am so very thankful for Aubrey and the joy she brings to our lives and how healthy she is for now.    Some of our friends have been telling us lately that they admire our strength and perspective in the midst of these things we are facing.  I have to be honest, we don't always succeed at this, sometimes we are overcome by our fears even though the Lord tells us over and over not to fear. I have to constantly take my thoughts captive and not let my fears for her future take root. It is a frequent battle for me especially.  The Lord is refining us.  I have been learning that the Lord has given us each our own measure of hardship, our own cross to bear unlike anyone else's.  I think we have been able to be thankful despite the circumstance, but the next step is to be thankful for the circumstance.  We are thankful for the depth it has brought to our marriage, to our love for Aubrey, and to our relationship with the Lord.  Bottom line: We trust in the goodness of God.  ALL THE TIME He is good.

Dining Room Artwork

My friend Robin helped me start this project a few weeks ago when she visited.  I had so much fun tapping into my creative side and painting this piece for our dining room.  It is four pieces of wood each 2 ft x 2 ft, textured and painted.  

It's the Little Things

NEW SUIT

Here Aubrey was showing Daddy her new swimsuit when he got home from work.  

LITTLE HELPER

Aubrey was a big help when we were fixing the sprinkler system!  We were actually so proud of how well she played around the yard while we were digging ditches, glueing pipes, and filling ditches.  She has been very good around the pool so far.  She has enjoyed the hot tub very much the couple of times we have taken her in.  
JOYS OF PARENTHOOD

One of the greatest things about being parents are these little moments when we get to hold Aubrey after she has fallen asleep in the car before we transfer her to her bed.  What a joy!

VALENTINES DAY
Brian took me to the Houston Museum of Natural Science for Valentines day.  They had an event called "Love Bugs."  There was food and dancing amongst the dinosaur bones--a Salsa band played and we had a blast dancing.  We visited the body exhibit with the plasticised bodies--it was really cool and educaitonal!  We also got to go through the butterfly exhibit which was very cool.  Then we walked through a park in the warm rain.  It was a lovely evening.

Back to Normal

Brian's work had some balloons delivered to Little Miss--a perfect gift!

The pool is almost complete, we are filling it up this very moment!  
Aubrey was helping Daddy fix the sprinkler system this morning.



Thank you all again for your prayers.  We are doing much better.  

Thanks for Praying

Many of you know and some may not, that Aubrey was in the hospital this past week.  On Tuesday morning, Brian left early in the morning to fly to Oklahoma.  Aubrey hadn't woken up by 8:30 am which was unusual.  I went in to check on her and I knew that something was wrong.  She was staring at me, but didn't say anything.  She was shaking a little and her color was a little off.  When I touched her I immediately noticed she was really cold.  I took her into my room, called Brian, then the pediatrician, and then Brian's mom and we headed to Texas Children's Hospital ER.  I had planned on getting together with a friend that morning so she called and offered to ride with me to the Hospital.  That was such a blessing that helped keep me calm on the drive.  

A whole lot of doctors, nurses, and others quickly worked on Aubrey to get her temperature, blood sugar, and heart rate back up to a normal place.  It was very scary for me and I was SO thankful to have Brian's mom with me.  Once they got her to a more stable condition, they took her in for a brain cat scan and then she was placed in the PICU.  Brian was able to come back that evening and spend the next three days with me at the hospital.  Aubrey was doing much better shortly after getting into the PICU, though she was still very sleepy for the rest of that day.  That night was very scary for Brian and I because after Aubrey's dangerously low blood sugar level, it shot up to a dangerously high level.  Thankfully her body was able to regulate it over the nighttime so she didn't need any help with that.

While in the PICU, Brian and I were offered a room at the Ronald McDonald House located in the hospital.  That was a blessing for us to get to take turns napping and showering there over the night.  Aubrey was out of ICU status early wednesday morning, but it wasn't until late that night that there was a room for her on the Cardiac floor.  We were so glad to be moved to a much larger room with a place for us to sleep and a private bathroom with a shower.  Also they only checked vitals every 4 hours there and Aubrey got to shed most of her cords and stickers and cufs and other tethers.  She only had one iv left and since she was feeling better she was happy for the extra mobility.  

It was a very difficult time for all of us.  Brian and I were very emotionally exhausted from watching Aubrey go through so much poking and prodding.  She became VERY fearful of anyone who would walk through the door (besides Mommy, Daddy, Grandma, and Grandpa.)  It hurt me so much to see her hurting and afraid and not be able to do anything but be there for her.

The doctors are still baffled by what actually caused this incident.  We have talked to lots and lots of doctors.  We are thankful to be in such place with such WONDERFUL doctors.  There are so many doctors reviewing her case and trying to find answers.  She had lots of blood tests, eye exam, hearing exam, liver ultrasound, heart ultrasound and so far everything has turned up normal.  The cardiologists and the geneticists want her to have a few more tests to try and narrow down a diagnosis (or rule out certain other conditions.)  We have to take her back to TCH on Thursday for a big brain MRI  and they are doing a skin biopsy while she is under anesthesia.  They finally let us go home Friday night.  She has been SO happy since we left.  She is completely back to her normal bubbly, loving, smart, silly self. 

Thank you for keeping us in your prayers.  Though it has been a difficult time, we have many things to be thankful.  We need prayer for wisdom and peace as parents.  We pray that Aubrey has peace and feels safe despite all the uncomfortable appointments she has to go through.  And of course we pray for healing.  We would like some answers, but we are okay without answers.  We need your prayers of protection: physical, emotional, and spiritual.  God is good.

Transition Time

So Christmas is sneaking up very fast on us.  We have been here in Texas about a month now, minus a week for Thanksgiving.  Aubrey had an appointment at Texas Children's Hospital last week.  The appointment was tough on her with all the pokes and stickers they stick all over her, but she is doing very well.  Her heart is certainly not worse than it has been and may even be a little (very little) better.  She has grown but the thick part of the heart has not.  Her heart is still squeezing very hard, so they increased her dose of the medicine again.  Overall we were very pleased with the news.  We were sad to learn that her very excellent dr. is moving to Ohio and we won't be able to see him any more.  But I am sure he is leaving us in capable hands.  

We are getting settled here in Texas.  The house is coming together and we have our vehicles.  I am still working on getting a license as that is a very time consuming process here.  We really like our home and the neighbors we have met have been great.  We found a church and even ran into friends from Anchorage the first Sunday we checked it out.  That was such an encouragement and an unexpected blessing.  I am looking forward to better weather and our pool to be complete.  So far the transition is pretty tough on me especially.  Brian likes his job and Aubrey is all settled.  I hope we meet some friends or get in a small group soon.  May parents get here Monday night for a week.  I am SO excited for that.  I think if I just get a few more things in order I will feel more at home here.  Thanks for keeping up with our family.