Happy Father's Day!

Since I haven't posted in a while, I thought I should put something up!

Abby is finally feeling better.  She had more fever this week, but now it's gone and the mucous is making it's way out as well.  Finally!

This past weekend we went to TN to celebrate Father's Day!  We had a wonderful time with family just being together.  Saturday we went to the zoo with Grandma, Papa, Aunt Connie and Matt which was really fun.  It was cool enough to enjoy walking around the park, checking out all the neat animals.  Josiah still remembers a lot of his animal signs which was good to see.

That night I got to see my sis and her girls!  We enjoyed chatting, catching up, talking about pregnancy (she's expecting) and watching the girls play.  I always feel refreshed after being with them.

Sunday morning I got Patrick up very early (4:30) to go to a special spot we used to enjoy before we were married.  It did involve hiking, so I'm pretty impressed with both of us that we made it to the top,  despite our minimal energy.  It was definitely worth the effort as we enjoyed the gorgeous early morning view!

We spent almost the whole afternoon on the lake!!  Another favorite for me.  Basking in the sun and actually swimming for the first time this summer.  The kids both got in the water, although we did see a few tears from J.  He wasn't sure he liked skiing on the big disk.  Papa and Grandma's boat is always a fun treat!  

Abby seemed to love the water, she was so relaxed and even kicked her legs a little. (more pictures to come)

Now we are home back into our routines.  This week we hope to hear back from the surgeon about Abby's upcoming surgery.  Long story made very short, we are expecting that Abby's file is now containing all the necessary missing pieces for the surgeon to examine.  I left a message for his nurse this morning.  So now we wait to speak with them again.  Hoping for a more complete, encouraging conversation this time.

It's difficult looking forward to surgery... not because we want it, but only because we feel that Abby needs it.  She isn't thriving on her GJ feedings and continues to lose skills that she seemed to enjoy just 1 year ago.  It brings so many mixed feelings.  Dread of surgery and hope of healing.

Thanks for remembering her!

Fever = ER for Abby

This weekend we had the privilege of a visit from Grandma and Papa!  While Patrick and I worked on our "almost remodeled" bathroom, Josiah and Abby played with G and P.

Saturday morning Abby woke up with a fever and some coughing.  We started loading her up with Motrin and Tylenol, trying to keep her hydrated and comfortable.  From past experience I went ahead and pulled her Diastat (emergency seizure med) out and left it sitting out on the kitchen counter... easily accessible. 

She had a restless night and coughed a lot.  Trying to keep her fever down we set the alarm to give Motrin/Tylenol through the night.

Sunday morning she still had a fever with some jerky movements.  Eventually the jerky movements turned into rythmic twitches of her lips; which turned into twitches of her left hand, and arm.  With in about 30 minutes of this pattern, including swiping her VNS every 3 minutes or so (which temporarily stopped the seizure), these focal seizures turned into general convulsions.  Fortunately we were ready this time with a new plan!

As soon as the seizures turned from focal to general we dosed her with the Diastat, made the necessary phone calls to her doctors, and loaded her into the van.  By the time we left the house (7 min after Diastat) her seizures had stopped and she was totally out of it.  We drove to the ER as instructed and calmly went through all the registration procedures.  It was really nice not being in a huge panic, running into the ER with Abby still seizing out of control and the staff pouncing on her.

Once she was settled in a bed and hooked up to the monitors we sat back and relaxed for the most part.  Abby slept, and they agreed to not stick her for blood work and IV fluids unless it became necessary.  It was the most organized and easy going trip to the ER we've ever had.  The neurologist wanted to keep her until the meds wore off (4 hrs), but then she spike a high temp (104) so they kept us another 2 hours to make sure she didn't seize again.  We left the hospital around 6 pm, just in time to be home with our family to enjoy a nice dinner together.

Today we met with our neurologist in her office for a scheduled appointment.  Basically we talked about yesterday's event, confirmed our plan of action, addressed her medications again, increased her VNS settings and discussed her reflux symptoms and requested a letter of release for surgery.  She told us it is very common for surgeons to ask for a neurology release before having surgery.  This made us feel better.  

We learned something new too.  She said Abby's VNS will have to be turned off before surgery b/c of a tool commonly used to cauterize that would influence the VNS function.  It is simple to turn off by using the wand also used for dosage setting.  It will be done by a neuro nurse practitioner at Children's before surgery, and then will be turned back on after it's over.  Glad to know that!

We also found out she has lost more weight.  She's down to 12 kg (26.4). 

Then we discussed the possibility of a port placement for future blood draws and IV meds/fluids that might be needed.  She explained the risk of infection that comes with a port placement would also put the VNS at a much higher risk for infection.  If the VNS becomes infected it would most likely have to be removed.  This new insight drops the need for quick IV access down a few notches on our priority list for Abby.  We might reevaluate in the future if things change, but for now we are glad to have this decision made.

Poor Abby is still pretty miserable.  Her fever is down some, but she is coughing a lot and is also now vomiting.  Today hydration has become our focus and just trying to keep her comfy.

Sickness sure is a drag, but at least we are home!

His Assurance

"... Never will I leave you; never will I forsake you.'  So we say with confidence, the Lord is my helper; I will not be afraid.  What can man do to me?"

Hebrews 13:5-6

We had our appointment yesterday in Birmingham with the GI surgeon for Abby.  He was a sincere man, a good listener and it was obvious he wanted to help Abby.  

In an attempt to keep my emotions in check, I'll keep this brief (or spare you the details).  

Some very important information seemed to be lacking from the file the surgeon was holding.  We did our best to describe the past 9 months of symptoms and numerous tests/procedures that Abby went through to finally end up in his office.  As we concluded our visit it was decided that in light of the fact that our "puzzle" was missing some pieces, we needed to gather more information before surgery can be scheduled.

We've made our (several) phone calls, requests for clarification and are currently gathering more information to add to her file.  

Giving this issue up to the Lord and actually letting go of it has proven to be a heavy challenge for me.  This is all I can say at this point without becoming irrational in my writing.

So, instead of flowing with my natural tendency of worrying about Abby until I get physically sick, I'm actually trying to pry my fingers open to let God take her.

I read in My Utmost For His Highest today:

"My assurance is to be built upon God’s assurance to me. God says, "I will never leave you," so that then I "may boldly say, ’The Lord is my helper; I will not fear’ " ( Hebrews 13:5-6  ). In other words, I will not be obsessed with apprehension. This does not mean that I will not be tempted to fear, but I will remember God’s words of assurance." 

 "The faith of many people begins to falter when apprehensions enter their thinking, and they forget the meaning of God’s assurancea— they forget to take a deep spiritual breath. The only way to remove the fear from our lives is to listen to God’s assurance to us.

What are you fearing?"  

"When it seems that there is nothing and no one to help you, say to yourself, "But ’The Lord is my helper’ this very moment, even in my present circumstance." 

"Take hold of the Father’s assurance, and then say with strong courage, "I will not fear." It does not matter what evil or wrong may be in our way, because "He Himself has said, ’I will never leave you . . . .’ "

Human frailty is another thing that gets between God’s words of assurance and our own words and thoughts. When we realize how feeble we are in facing difficulties, the difficulties become like giants, we become like grasshoppers, and God seems to be nonexistent. But remember God’s assurance to us— "I will never. . . forsake you." 

Enough said.

We are earnestly praying for God's will to be made known to us about Abby's life.  Her reflux symptoms have practically consumed us (in addition to many others) these past 9 months.  Patrick and I have done everything in our knowledge and power to avoid surgery.  We've watched her gradually losing weight, losing oral skills, losing the ability to swallow her saliva.. the list goes on.  

But also just like all of her other challenges, we are COMPLETELY powerless to fix them.  We find ourselves thrown back into the "Spiritual School" of Trust.  Do I really trust Him? Do I trust Him to orchestrate every detail pertaining to her health, growth and comfort?

I can honestly say that trusting the Lord is my only goal for this day.

Our family would be so grateful if you would pray with us for resolution of this problem.  Specifically for healing, for clarity in communication among all of her physicians, and lastly for wisdom.

Thank you!

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.  Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before Him endured the cross, scorning its shame, and sat down at the right hand of the throne of God."

Hebrews 12: 1-2

Girls Weekend + 1 Little Man

The kids and I went to TN to spend a wonderful weekend with my sis and her kids!  We always have a blast together.

Thanks girls!  We miss you...

(Before playing, skip to the bottom of this page to pause/stop blog music)

Playground Process

We have a new swing set outside!  Patrick and I built it together a few weekends ago.  It was fun!  No real plans, just a vision and big pile of wood.

We couldn't have done it with out Aunt Carolyn, who came to take Abby and Josiah duty while we worked.  Thanks Carolyn!

Abby has a new swing just her size with the support she needs.  It works great!  Josiah loves to climb into the fort and touch the trees.

Here are a few pics of the process...

Now they can both swing to their hearts' delight!

Prayer for the Chapmans

This morning Patrick called to tell me the tragic news of little Maria Chapman's death.

Report from the Tennessean:

"Steven Curtis Chapman's youngest child died Wednesday evening after being struck by a car driven by her teenage brother in the driveway of the family's Williamson County home.

Maria, one of the Christian singer's six children, was taken by LifeFlight to Vanderbilt Hospital, which confirmed the death, according to Laura McPherson, a spokeswoman for the Tennessee Highway Patrol. 

The 5-year-old was hit by an SUV driven by her teenage brother, she said. Police did not give the driver's name.

The teen was driving a Toyota Land Cruiser down the driveway of the rural home about 5:30 p.m. and several children were playing in the area, McPherson said. He did not see Maria in the driveway before the vehicle struck her, she said.

"It appears to be a terrible accident,'' McPherson said.

No charges are expected, she said. The accident was witnessed by two other children; the entire family was home at the time, McPherson said."

I can't imagine the shock and pain this family must be experiencing today.  We wanted to send this out so that folks who haven't heard yet could be in prayer for this family.  Steven C. Chapman has been one of our favorite Christian music artists for a long time.  His passion for orphan relief and international adoption has helped hundreds of children, especially in China.

Maria was one of three Chapman daughters adopted rom China.  His blog includes several darling videos of Maria and her sisters.   

Our hearts especially go out to the brother driving the SUV yesterday.  His life has changed forever.  Please pray for his heart during this tragedy.  He needs special comfort and healing.

Another New Button

(Abby with temporary Foley cath in place of GJ-tube)
"Rock of ages cleft for me, let me hide myself in thee;

Let the water and the blood, from thy wounded side which flowed,

Be of sin the double cure;

Save from wrath and make me pure.

Not the labor of my hands can fulfill thy laws demands;

Could my zeal no respite know, could my tears forever flow,

All for sin could not atone;

Thou must save, and thou alone."

This hymn (sung by Chris Rice in his new album Peace Like A River) played loudly as Abby and I drove to the hospital last Friday morning for another GJ-tube replacement. It was pulled out (by accident of course) during a therapy session the day before.

(Emergency tube securely taped, so as not to lose it while in the car!)

My stomach was in knots and I dreaded the day ahead of us.

I think my body/nerves have become programmed some how to do certain tricks when I drive near a hospital. It probably started when I was in nursing school... waking up before dawn, feeling nervous about my new responsibilities and spending hours at a hospital. Then as a labor and delivery nurse driving to work feeling the pressure and anticipation of my shift... not knowing what sort of night it might be. Some were joyful as I helped new people enter the world; some were grief stricken as I cared for new babies who would never take a breath.

But this feeling was mostly solidified during the hundreds of trips I took to the East TN Children's Hospital to visit my tiny baby in the NICU. It's difficult to explain or describe the sinking sense a parent gets while making these treks; knowing your child is critically ill but not knowing what will happen from moment to moment. Hoping against hope that your child will have a good day, and that you can hold it together until you are alone.

So going to hospitals now brings all those emotions to head, even if I'm just going to see someone I barely know. The smells, the sounds, the waiting rooms; they all stir up an incredible sick feeling deep in my gut.

Anyway, listening to "Rock of Ages" on our way to Abby's procedure somehow lifted the heaviness and temporarily soothed my pitted stomach. I realized once again how much I need to give Abby over to the Lord. This process has taken me 4 1/2 years to learn and I'm still forced to practice every day. Some days my grip is so tight I lose sight of everything else around me. It's like I can't move my head, I'm just looking straight at Abby, blocking all other voices and images out so I can try to fix her. This is probably why there are days where I feel so totally drained, depleted and discouraged that I haven't "fixed" her. Isn't this what mothers do? Kiss the booboo's away, wipe the tears and hug their children until they are better! It works with Josiah... why won't it work for Abby?

"Thou must save and thou alone."

(Josiah-after waking him up to take Abby to the GI doc)

Back to Abby...

Friday ended up being a longer morning than I had anticipated. The same nurse we have seen the past 4 procedures came to start Abby's IV. I was glad to see him because he is one of the only people who have had luck with her troublesome veins. He brought another nurse with him and together they searched and searched for a useful IV spot. They stuck her three times and finally got a good vein... but it took over an hour. While they looked, they also talked with me about getting some sort of central line in for Abby. They emphasized that with Abby's issues, her young age, and the poor quality of her veins, this process of starting IV's will only get worse with time.

This isn't the first time a porta cath or some other form of central line has been mentioned for Abby. The last ER visit and several hospital stays, various docs and nurses have made comments about it... after struggling to start an IV or draw blood. It's probably something we will be looking into over the next few weeks before her surgery. Perhaps both could be done at the same time.

They kept Abby back in the procedure room for much longer than usual. It was making me nervous, but the nurses assured me that she was fine. The last time she had her GJ replaced it only took about 15 minutes for the entire procedure.

Finally after 45 minutes they wheeled her back into the room. The nurse said he had trouble getting the tube in, not sure why. Possibly resistance from scar tissue or something. Thank goodness she was put to sleep.

At that point I was just glad to have her back! She was pretty sore for the rest of the day and a little wiped out.

"Nothing in my hand I bring, Simply to the cross I cling;

Naked, come to Thee for dress;

Helpless look to Thee for grace;

Foul, I to the fountain fly;

Wash me, Savior, or I die.

While I draw this fleeting breath, when mine eyes shall close in death,

When I soar to worlds unknown,

See Thee on Thy judgement throne;

Rock of ages, cleft for me,

Let me hide myself in Thee."