A First

Well, as we've learned with Abby there is always a first for everything.  Just when you think you've got it all figured out you get smacked in the head by something new.

Abby has her first G-tube site infection.  

This past week has been very difficult with Abby's behavior.  Several days she did nothing but bite her fingers, moan and thrash about.  Nothing seemed to sooth her, and many days she would simply exhaust herself from it all.  

We couldn't figure out what was wrong with her.  Finally Thursday night we noticed her G-tube site didn't look good.  It was red, swollen and had a big knot.  We took her into the doctor the next day to have it checked out.  

(I have to confess that my pride was hit hard... Abby's site has never had any problems that I couldn't fix.)

It was definitely infected!  He had to drain it (yuk) which was very painful, and collect samples for culture.  We found out yesterday that it grew H. Influenza A, and a few other things.  We originally thought it was a staph infection.

Apparently, after talking with our doc, this is pretty unusual.  She is on oral and topical antibiotics and after 6 days it is looking MUCH better.  She is a different kid.  Monday was still tough, but by Tuesday she was back to her pleasant self.

One thing we've come away with from this week is that her 'finger biting behavior' is telling us "Something Hurts"!  Figuring out what hurts is our constant challenge.

#6

I forgot to mention the last bit of excitement from Thanksgiving weekend!

Abby's feeding tube got pulled out, just hours before we were planning on driving home.  This one lasted about 3 months, so I suppose it was about time for this to happen.  Unfortunately this time we didn't have a backup G-tube with us (normally we keep one in the car).  Instead we had to place a foley catheter to keep her site open until we could get home.  It was a little awkward and uncomfortable for her, but it worked ok for feeds.

This past week we spent the entire Tuesday afternoon at the hospital preparing to have her 6th G-J tube placed.  

This has become a farely routine procedure for us, not usually too much drama.  But this time a different doc was taking her case, and he wasn't familiar with Abby.  This meant that there was several hours of waiting, and discussions about possibly needing to sedate her for the procedure.  UGH.

Meanwhile, Patrick waited and walked J and L around the hospital, hopeful that it would be a quick visit.  We finally ended up together in her room while we waited, after being told children were not allowed back.  ha

Just a little drama to end our weekend.  It wouldn't be the same with out some, right?

Thanksgiving fun

Our time with family in TN was full of fun!  Grandma and Papa had several activities planned for the kids in addition to a wonderful meal.  We made gingerbread houses, ate lots of candy and made some sweet memories. 

 

The kids received a special gift:  lovingly made Christmas outfits from Grandma!

As is customary on Thanksgiving day, we ate and ate and ate.  Two special meals filled our day.  We headed over to Nan's (Mom and Dad's place) for a get together of the Job family.  The kids played together and we all went for a much needed, post stuffing walk with Pipai!  It was wonderful getting to hug Dad's neck.

Friday we met in Knoxville to attend the Fantasy of Trees event, a fundraiser for East TN Children's Hospital.  It was a beautiful display of brightly lit trees, colorful gingerbread houses and creative craft booths.  Josiah's favorite was the bike corner.  They had little cars and scooters for the preschoolers to enjoy.  

We have been before, but this time it was more fun getting to watch J and his cousins Anna, Norah and Jack playing together.  It is a special event for us, knowing that all the proceeds go towards helping Children's Hospital.  

We put our tree up this week, and as we decorated I counted at least 4 ornaments that came from past Fantasy of Trees benefits.  I think this will become a family, Christmas tradition!

Give Thanks

I love the Fall!  

The beautiful colors of nature; the changing temperatures from hot and muggy to cool and breezy; the smell of crisp air; looking forward to Thanksgiving and Christmas.

Part of my love of Fall has to do with not having it growing up in China.  The weather usually went from hot to cold, with no in between.  The 5 years I spent in Manila, Philippines, were even more disappointing.  School started in August Hot and humid, then went to hot and rainy and by Christmas it was just hot.  No fall weather at all!  I used to long for the refreshing coolness I remembered from my early days in Tennessee.

Many Autumn days have past since I returned to the US.  Now it has taken on new meaning for me.  The cool weather and beautiful trees remind me of the first several months Abby was in the NICU, fighting for life.  The drive from my parents' condo in Knoxville to the hospital took us through many colorful areas.  Each trip taking us back to face a new crisis for her.

It's amazing how all the senses grab hold of intense memories and cling to them until you experience those triggers again.  Smells especially.  I remember each and every race to the NICU with the back drop of Fall.

Right before Thanksgiving 2003 Abby had undergone one of many surgeries.  This one was to place a temporary shunt in her brain to relieve excess fluid.  We all thought she was strong enough to tolerate the procedure, even though only weeks before she had been gravely ill.  The surgery went well and I distinctly remember driving home weary from the day, admiring the fall foliage, looking forward to sleep.   

Then the dreaded phone call.  

Driving back to the hospital in a fog of exhaustion and disbelief we returned to give permission for an emergency surgery.  Her bowels had perforated, again.  The stress of the shunt surgery had proved to be too much for her body.

That night we stayed in the NICU with Abby and prepared to say good bye to her, again.  In the early morning hours the doctors took her back to the OR for yet another procedure.  Her body was fighting hard, her veins had shut down and they needed more IV access.  They put in a central line (broviac) for all the medications she needed.

This all happened days before Thanksgiving that year.  This is what I think of when we prepare to celebrate Thanksgiving day.

I have so much to be thankful for!  Thankful that Abby no longer has her ileostomy bag, and is able to have mostly normal stools.  (sorry if TMI!)  Thankful that she doesn't need TPN anymore.  Thankful that she is growing into her 6 year old self, with attitude and sweetness.

So thankful for my boys.  My two, full term, handsome boys.  Thankful for all the laughter, smiles and tears of joy they bring.  

Thankful for my hard working, compassionate husband who has shared so many experiences with me, sad ones and happy ones. 

Thankful for a Faithful Heavenly Father who never leaves us, and never gives up on us.

Psalm 34:7-9

"The angel of the Lord encamps around those who fear him, and he delivers them.

Taste and see that the Lord is good; blessed is the man who takes refuge in Him.

Fear the Lord, you his saints, for those who fear Him lack nothing."

5 months

Our little guy is 5 months old!

He is 15 lbs 11 oz and in the 50 %ile for growth.  We just pulled out the next size up (3-6 mon) outfits as he is busting out of the 3 month size.  *sigh*   He is growing way too fast.

His new trick is rolling from tummy to back.  

He sucks his thumb like a pro, and is sleeping longer nights.  Lately he has gone to bed around 9 pm and waking about 6 am!  Yippee for us.

He loves to be on his tummy looking at the colorful blankets.  Pushing up on his hands has become a favorite position while flashing a winning grin!  We often find him looking around his crib when we get him out of bed after naps.  

This week has been full of sickness for Josiah, and for Abby also.  Poor 'Siah had the stomach bug Sunday which lingered 'till Tuesday.  Fortunately today he is feeling much better!  Abby has been acting sick, running a low grade fever and having lots of seizures.  In the last 2 days she has had 12.  

We've been giving her the extra seizure meds (saved for times of illess) to ward off the prolonged, horrible ones.  So far, so good.

It's Wednesday and we are trudging through the rest of the week, thinking about Thanksgiving and looking forward to getting out of the house more.

Here is the "Thankfulness Turkey" we made today:

Family Vacation 2009

Our family spent a week in Florida last month relaxing, swimming and just hanging out together.  We had a gorgeous house with private beach access and a private swimming pool!  

This year we added two new members to our group.  Matt is our new brother-in-law and of course, our little Levi!

On the way down we stopped in Montgomery at the Boundless Playground there.  They have equipment that is accessible for children in wheel chairs.  It proved to be a nice break from our long journey.

The time we spent together this year was truly peaceful and restful.  Watching the ocean waves, the diving birds, and just taking time to stroll down the beach was very soothing.

One of the things we were most thankful for was that Abby had a good week!  No sickness, few seizures and restful afternoons were all answers to our prayers.  She spent time in the pool, feeling the sand and going for cart rides on the beach.  She did especially great in the car both ways too.  We think this vacation was great for her little spirit!

Thank you Papa and Grandma!

October update

(vision stim with christmas lights)

It feels like it's been so long since I've had a chance to sit down with my computer and actually think about what is going on lately.  The days just slip away and sleep has been a major priority.

Abby has had many appointments these past 2 weeks.  We've gone up on the Banzel (seizure med).  Her seizures lately seem to have increased a little.  The more subtle ones are coming more frequently and she is still having many incredibly irritable days.  The VNS was also slightly adjusted.

She had her eye pressure checked this week and it was found to be several points higher than her previous check 6 months ago.  Last time it was around 24 and this week it was 33.  The doc has increased both of her eye drops and we will check it again in 6 months.  

Josiah is his usual helpful, fun, self; chatting all day long and finding any excuse to stay up late.  Last night Abby was lying in bed fussing loudly.  I went in to snuggle with her and try to settle her down, all the while listening to J talk.  

At one point he asked me: "mom, when Abby gets big and becomes a walking girl, will she play with me?"   My heart just melted.  We've had many moments like these lately as he is slowly figuring Abby out.  He even explains to other people that Abby is blind and she needs help playing with toys.  It brings on such a mixture of emotions for me.  I'm so proud of him, but often times I find myself fighting back tears as I try to explain things to him.  

(Abby and Levi cuddling)

Lately as we seem to hop from one appointment to the next, we are able to interact with all kinds of children.  Some of them have more obvious challenges than others.  Josiah has decided that ALL children with special needs must be blind, like Abby.  He tells me so when he sees them.  I've had to explain to him quietly several times that these children are not blind but have other issues.  He promptly corrects me and tells me that, yes, they are indeed blind.

I suppose he has formed his own definitions.  

Levi.  What a joy.  Every moment I get to hold him during the day I feel my heart give a sigh of relief.  In those precious moments I think a weight is lifted.  His chubby soft cheeks are so yummy to kiss.  I find myself becoming an absolute goof ball trying to get him to giggle.  He is so happy and so generous with his smiles.

Most nights he is sleeping until 4 am, and some nights later.  I'm really thankful for the extra rest... it changes a person.   I get scary when I'm deprived!

This week our family is gearing up for a week of vacation in Florida!  We can't wait.  It's going to be a nice break from the daily grind.

little gym

Josiah has started gymnastics at the little gym!  These were taken at his first class last week.  He loves it!

This year he has become much more aware (and sometimes annoyed) of all the attention Abby gets through her therapies/dr. appointments.  It has been a challenge trying to keep him occupied during the sessions without making him feel left out.  There are just too many appointments to simply ignore him. 

 We try to make plenty of effort to include him in taking care of Abby.  He likes being our big helper!  I'm always a little surprised at the things he is willing to do for her.  If her feeding pump beeps, he will announce "don't worry mom, I'll fix it."  And sometimes he actually does!

One way to give him special time alone and to get some energy out is through this fun class.  We think one of us will take him to his class and leave the others at home, so that this will be time set aside just for him.

He really does have a good attitude most of the time learning to share mommy/time with Abby.  I think he has a basic understanding that she needs extra from us.  

It's not about fairness, but more trying to be intentional about building his little spirit up and giving him a break from the routine.

Sleep!

Last night Levi slept from 7 pm until 6 am this morning!!  Yippee!  We both got up to check on him a few times because...

     any other night this week might look like this:

up and eating @ 6 pm

down @7

up and eating @7:30

down @8:30

up and eating @ 10 

down @ 11

up and eating @ 3 am

down @ 3:30

up and eating @ 7 

Levi is now 3 months old and such a joy!  Smiling and starting to giggle, he lifts our spirits so much every day.  I don't think there is anything more beautiful than a baby's smile.

Looking forward to more sleep!

ER again

We had our first ER run from our new house last night.  It has proven to be a much quicker trip!

Abby had an off day yesterday.  She had several seizures, didn't do well at UCP on the tread mill and had a low grade fever (100.6) in the afternoon.

Right after supper Patrick found her on the couch in one of her prolonged seizures.  We hadn't heard her and didn't know how long she had been seizing.  After giving Diastat we loaded everyone in the van and rushed off to the ER.  It only took about 6 minutes to get there!!

After 3 sticks they finally got it stopped with IV meds.  They did the usual blood and urine tests in addition to the flu swab.  So far everything came out ok.  Her fever got up to 103+ at the hospital, so we know she is sick with something.  Poor thing.

The medication made for a restless night of tossing and turning for her and for us.  Today she is a bit disoriented and tired.  We are having a quiet day at home with no therapies.  It has been rather nice for all of us.

An honest portrayal of my wife...

 How many times has a man attempted to locate the words to describe the life he experiences with the woman he loves.  I know it is numerous.  However, I now join the ranks of these, shall we say star-crossed men in an attempt to describe their brides 

it is the way you still share drinks with me… your love of chic-fil-a milkshakes… how you continously show love to our daughter who can’t show it back… how you still seek to obey the Lord, when we had our 3^rd baby and how you bravely endured morning sickness, the ER visits, weekly shots all for a healthy baby… it is the way you listen to my dreams and follow me as I chase them or still listen even though you know they are not realistic… 

for the way to are so patient with Abby and rescue me when I am frustrated… it is that you would still rather be with me than anyone else… for the times when I get home and you say “I need you to take us out for a while”…  it is the way you still hurt with me every day over Abby, cry out to the Lord for her and celebrated a few weeks ago as she started lifting her hands when we put her tray on in the high chair…  for the way you look so beautiful without knowing it… how you have memorized all Abby’s medicine, surgeries… your compassion for those hurting… your contagious laugh... addiction to sweet tea

Paba, I have to confess that last week I still could not believe that you picked me.  

You are by far the strongest person I have ever known, I define this by…how you cared and sat with Abby in the NICU for 6 months… that you had the courage to have more children with high risk pregnancies…  that you patiently love and care for Abby, Josiah and Levi every day… for the choice that we made for you to give up a career to care for our children

I think you might be the smartest person I know (including all the rocket scientists I work with at NASA)… you are fluent in Chinese… you can figure anything out… insight into scripture… medical knowledge…

A wife of noble character who can find? 
       She is worth far more than rubies.

Her husband has full confidence in her 
       and lacks nothing of value.

She brings him good, not harm, 
       all the days of her life.

I am still crazy about you,  Happy Birthday,

Patrick

Happy Birthday Abby!

Sweet Abby, you turn 6 years old today. We can hardly believe the way time has slipped through our fingers. You are a precious girl and we adore you!!

Love,

Mommy, Daddy, Josiah and Levi

Abby Turns 6! from patty hull on Vimeo.

Infectious Disease

Today we took Abby to Children's Hospital for an appointment with an infectious disease doctor.

Over the past 11 months we have been tracking Abby's fever patterns along with her seizures.  Each time we suspect she might be feeling sick we take her temp and record it on our calender.  The seizures we've been documenting this way for several years now.  

Her fever pattern is very erratic, coming and going without warning.  It usually comes with no other symptoms, except an increase in seizure activity.

We took our documentation with us in hopes that this new doc might be able to uncover what is causing the fevers.  After reviewing our notes and a thorough physical exam he came to the conclusion that it isn't clear what the problem is.  Her fever patterns don't indicate an infection as they don't hang around more than a few days at a time.  They are too frequent to be colds or flu's.  There are no rashes, bumps or sores.

This brings us back to her brain.  Because of her encephalopathy it is possible that the part of her brain controlling temperature has been damaged.  How did this happen?  Probably from the bleeding she had in her ventricles during that first week of life.  This bleeding is also the cause of her CP, loss of brain tissue, seizures etc.  We wonder if the prolonged seizures have played a part.

There is no way to definitively diagnose this as being the culprit.  Docs come to this conclusion mostly from family reports, as there are no tests to prove it.

What does this mean?  We could be dealing with fevers + seizures= bad days, indefinitely.

The plan for now is to take her in for further testing if/when she runs a fever above 101 for several days with no apparent reason.

They did a few blood tests today to check for possible hidden inflammation some where in her body, but we don't expect to find any.

Our hearts and bodies feel heavy today.  Hoping for an answer or solution to this issue, but instead coming away with more questions.  It is very draining.

Praying for Abby's comfort and trying to surrender all...

GJ tube #5?

I'm starting to lose count, but I think we are up to Abby's 5th GJ tube replacement.

Last week we noticed her tube was loose and found almost no water in the balloon (inside her belly there is a water filled balloon holding the tube against her skin).  The tube was obviously slipping out of her tummy when ever she moved.  

In an attempt to keep it in as long as possible I tried to re-fill the balloon several times on Friday... but it finally slid out when I picked her up.  We spent most of Friday afternoon at Huntsville Hospital waiting for our turn in the procedure room.  

The tube replacement itself went pretty smoothly, although we waited for about 1.5 hrs for the doctor to appear.

I'm finding that with each little crises such as this, I'm becoming more calm and relaxed than the time before.  The first time I saw her tube get yanked out I had a moment of panic and running around in circles trying to find our emergency G-tube to put in it's place.  This time I was able to calmly wipe up the mess, throw the old tube out, get the new one ready and replaced while Abby was in her stander, waiting to be strapped in.  

I find it kind of funny recognizing personal growth in this area... just not one of those things I thought I would be good at with my 5 year old.  It is however one of the many times I've been thankful for being an RN.