Merry Christmas!

Gastric Emptying

Wednesday we headed to Birmingham for Abby's test.  She tolerated the 4 oz formula bolus as best she could, although she did gag and retch several times.  We sat with her for an hour while she was lying under a machine taking pictures of her gut while it processed the formula.

(watching/listening to Dora)

(cute sea mural to look at while in the machine)

There was some confusion during the test about what we were seeing; however they sent us on our way after the hour was finished.  Abby was pretty upset the rest of the day.  While we waited at the Dr.'s office to be seen she was very vocal and obviously upset.  The bigger she gets the more unsettling and awkward this can be... especially in a crowded but cramped waiting room.  She did finally calm down after we gave her Carafate.

The doctor told us the findings from the test were perplexing.  The purpose of this test is to fill her stomach with formula and watch it empty into the intestines while measuring how long it takes.  For some reason Abby's stomach did not hold any of the formula, instead it went straight into her intestines.  After double and triple checking that they used the correct port (G not J), he concluded that her G-tube must not be in a proper position.  He thinks it must be too low near the stomach's exit valve (pylorus), so that anything put into this port directly irritates the valve, possibly causing some of her gagging, retching and general discomfort.

(stressed Abby, pulling her hair)

The more we learn about the GI system and it's complex workings, the more concerned we are as to how we might help Abby.

So, going back to the test... the doc thinks her tube might need to be moved.  It's possible that her G-tube has changed position with her growth.  It was placed when she was 9 months old and about 12 lbs.  Now she's 7 and weighs over 35 lbs.  I never imagined this could be a problem!

The plan now is to wait for him to discuss the test results with the radiologist on Monday,  and he will call us Tuesday evening to talk more about it.  One option might be to remove her current G-tube and place an NG (nasal gastric) tube for a few weeks while we wait for her stoma to heal.  The other is to schedule the surgery and just remove the old and place the new at the same time.  There is also evidence that formula coming from the J-tube is backing up into the stomach.

Needless to say we are a bit confused about the outcome of Wednesday's test but also very thankful for the truth.  That is exactly how we had prayed... that the truth would be revealed through the test and a good solution would be found.  Although it's not what we expected to find we are glad to know this problems exists.  Reflux is still a big part of the equation although it's unclear at this point what needs to be done about it.

We are anxiously patiently waiting for Tuesday's call.

Meanwhile we have stopped the higher calorie formula due to diarrhea problems.  She just isn't tolerating the stuff and isn't able to absorb the nutrients in it.  So for now we are back to the 275 cal/can of Peptamin Jr with fiber.  It's been difficult to get the full 3 cans/day in her.  Lately we've been waiting for her to fall asleep before we give her nightly meds and then increase the rate on her feeding pump also.  She is able to sleep soundly with the Carafate on board and tolerates her feeds much better when she is sleeping.

I got a quick shot while she was being casted for new AFO's (ankle, foot orthosis).  Her feet are growing!

17 months

Precious Levi is growing and changing faster than I can record his cuteness!

He is talking more and has really picked up in his signing too.  He says: Momma, 'Siah, Abby, Dada, apple (apo), stuck, banana (nana), more (mo), door (doe), Papa, no, diaper (di), baby, grapes (gay).

He signs most of the above and also "all done,""up," "hurt," "sick," "bird," "sing" and a few others.  I love hearing his little voice and watch his hands tell me what he wants.

Grapes are his favorite thing in the world!  He asks for grapes every day and cries if we don't have any.  He still likes to throw things. Anything and everything.  Bathrooms have a particularly strong draw for some reason, where he loves to pull all the toilet paper off the rolls and explore the toilet.  *cringe*  Today I found him about to throw a CD in!!   We try to keep the door closed but any opportunity to enter is taken.

He's quite the climber too.  He climbs on the kitchen table, the counters, the train table, the piano, any and all chairs, a stool.  I'm surprised he hasn't attempted our Christmas tree!  He does however love to rip off the low hanging ornaments and chuck them across the room.  Why did we get a tree this year?

It's been fun to watch the boys play together.  Levi has developed a high tolerance for tackling, although there are a few tears shed every day.  Someday he will have his turn to be the tackler!

He weighs about 22 lbs.  Just right for a good squeeze!

Reflux continued

The G-tube trial is officially over and we have reverted back to the GJ-tube.  Abby's reflux has reared it's ugly head again.

For about 4 months she seemed to be doing well with the G-tube feeds.  We were hopeful.  The past 3 months or so we've started seeing the tell tale signs of reflux discomfort... moaning, arching, gulping/swallowing, finger biting, bad breath and sleeplessness.  These are a few of the symptoms we've seen since Abby was tiny.

So back to the GJ-tube we go.

(At the hospital waiting for the procedure- listening to Elmo)

And to a new Gastroenterologist.

Our visit with this new doctor went very well.  He is a caring, personable and extremely knowledgeable guy!   As soon as we shook hands and started talking we knew it was a good fit.  First order of business was a significant increase in one of her reflux meds.   It's called Carafate and it really helps!  He more than tripled her dose, but explained that this is just a band aid for her problem.  It will help keep her more comfortable until we can get to the bottom of her reflux and understand what needs to be done.

He also described two different procedures that might be options for her.  The first is a repeat Nissen Fundoplication.  This is the surgery she had at 9 months old; this would be a re-do.  Potentially this could stop her reflux and allow G-tube feeds again.  He explained that some kids just can't be fed into their stomachs and they need a permanent J-tube.  This procedure is much more complicated and involves rearranging some of her small intestines.

Before we think any more about surgery Abby will have some testing done.  She is scheduled for a Gastric Emptying test on December 15th.  During this test they will put radioactive liquid into her G-tube  and watch what it does.  She will be lying on a table under a special scanner that will take pictures of her GI system.  If she refluxes it will show it.  They will also watch to see how long it takes her stomach to empty.  After this test we'll get to talk with the Gastroenterologist again and discuss the results.  He may order additional tests at this point.

We are so thankful for this new doctor.  Hope and relief for Abby are in sight!  She will struggle with reflux and GI issues for the rest of her life, but if we can help her be more comfortable and continue to receive good nutrition so she can grow and thrive, it will make all the difference in the world.

She has gained 1 lb since the beginning of summer which is good.  At feeding clinic this month she weighed 35.6 lbs!  This is good news, although our dietician wants her to get back on her growth curve.  She is the size of a healthy 4 year old.  I think she looks great!  We will start her on a higher calorie formula soon.  This will give her a boost without having to increase her intake... which is a challenge right now.

Thanks for all who have prayed for our little Abbers!

Thanksgiving Bucket

They come in all shapes and sizes.  Growing up in China my sister and I called ours the "lu tong," or green bucket.  These days we use a blue, round, plastic bucket from a hospital operating room.  It comes in handy when the stomach bug attacks!!

Yes, this Thanksgiving we got the nasty bug. (thus the lack of pictures.  Head over to Lee's blog to see a few) Our wonderful family came down from TN to spend the holiday weekend with us, and the night they arrived I came down with it.  Thanksgiving morning Patrick got his turn, and that afternoon poor Josiah succumbed.   Needless to say it didn't turn out like we had hoped.  As the old saying goes, Life is what happens while you are busy making other plans (John Lennon).  We had plenty of plans all right!!

We still got to enjoy some time with our family, the kids had a blast playing together, we did actually have a Thanksgiving meal and yes, there is plenty to be Thankful for.

We are so very thankful for our parents who love us.  For Grandparents who visit, call and Skype us.  For sisters who care for us even when we are sick.  For friends who call.  For Doctors who listen.  For a hospital close by.  For a heavenly Father who knows all of our needs even before we ask.

Abby is sick now and we are settling in for a potentially long night.  poor little girl.

Visit with Aunt Connie

Last weekend we enjoyed a fun visit with Aunt Connie while Daddy and Uncle Matt went backpacking together!

We had some good time to catch up, talk about Christmas ideas, bake cookies and cheer on the UT vols!!  Saturday morning we drove to an old favorite, the special needs playground in our old neighborhood.  They updated a few things adding new swings and a rubber turf under half the area.  It was really great, much easier to navigate a wheel chair.  The kids had fun just running free and taking in the beautiful day.

Later that night we made some gingerbread cookies.  yum!!

Potty Dance!

I never thought I would ever say this, but...

ABBY IS USING THE POTTY!!

We have a loaner potty seat (Tumbleform Carrie seat)  from UCP and have started putting her on it 3 times a day, just to let her get used to it.  It's been 2 weeks and she has gone #1 four times and today she went #2!!  Praise the Lord!

We are truly BUSTING with pride, and so thankful for this giant leap forward for Abby.  Another wonderful suggestion from the Perkin's deafblind team in Boston.

Strep Throat in Paradise

Our family enjoyed a beautiful week in Florida last month.  We look forward to this time away all year long!

Unfortunately this year we took along a wretched stowaway.

On our drive down Abby got very sick.  While spending the night in a hotel room we stayed up with her half the night treating her fever and watching her have one seizure after another (12 total).  Desperately trying to avoid an emergency hospital run in a strange city, we gave Diastat (her emergency seizure med).  After the Diastat and an extra dose of her regular meds she finally fell asleep around 7 am.

She and I slept for a few hours.  After a shower I was feeling optimistic, so we loaded Abby up with meds, and the car with our many bags and headed towards our final destination.  About 30 minutes into the trip Abby started seizing again.  After the 7th seizure we called her neurologist b/c we had used up all of our available options.


We stayed another night in a hotel very close to a large hospital, gave Abby the newly ordered meds and waited to see what would happen.  Fortunately, despite her fever, Abby was able to rest through the night with no more seizures.

In the mean time I was feeling lousy, thinking it was from a lack of sleep.  By Monday I had a fever and was pretty miserable with a very sore throat.  Thankfully after a trip to a Doc-in-the-box, I had antibiotics for strep throat.  Knowing Abby's symptoms closely resembled mine, Patrick took the kids to the same doc, where Abby and Josiah both got antibiotics for strep.

The rest of the week was spent resting, trying to swallow food, playing on the beach and enjoying time with family.  The guys went fishing, the kids went swimming, I got to read more than I have in the past year and I had a gorgeous view from our bedroom window which was a nice treat!

I was really thankful to have gotten sick, otherwise we might not have known Abby needed antibiotics to get well.  She would have been miserable the whole week.

Our last night we got to sit by a bonfire, roasting marshmallows and enjoying each other's company.  Perfect way to end our vacation!

Answer the cry

November 7th is Orphan Sunday.

(pause blog tunes @ bottom of blog)

Adoption.  Over the past 6 years, and even before that, we have felt God's stirring in our hearts.

After Abby was born and struggling in the NICU, the Lord opened our eyes to a part of life and humanity that we hadn't personally experienced before.  The pain of watching our child fight through infections, surgeries and disease was deep. We couldn't imagine what that experience would have been like without Christ and without each other.  All around us babies struggled.  Some had both mom and dad present.  Many had very young, single moms holding them.  A few were there all alone.

God's call for his people to care for the poor, the sick, the widow... and the orphan is very clear.

James 1:27

"Religion that God our father accepts as pure and faultless is this:  to look after orphans and widows in their distress and to keep oneself from being polluted by the world."



(pause blog tunes @ bottom of blog)


God has shown His mercy and loving kindness to our family through all of Abby's many hard days and nights.  Through her relentless seizures, her moans of discomfort and her frustration with communication.  This doesn't mean that we have things figured out or that we always have great attitudes about this life.  The truth is that Patrick and I still ache every day.  There are still many questions that we have for the Lord.  Tears still flow as we pray over Abby about her life and her difficulties.  There are more days than I care to admit that we feel weary and defeated.

In the midst of this relentless heart ache, God has been revealing himself to me in ways He might not have otherwise.  This is our story.  This is the path He has laid before our family.  Maybe my selfish, prideful heart needed to experience pain to truly see God's love.   (mom, I never did read the book you gave me in college: Pain - The gift no one wants)  Everyone has a story.

So, what does this mean for us?  I have no idea, except that we want to follow His prompting, obey His word and move.  We've had the honor of watching dear friends walk the journey to adoption; through foster care and then international, special needs adoption.

When? How?  I don't know.

The Lord has shown me some things these past few days (as my husband and J went on a last minute trip to the Cape for a shuttle launch) that have forced me to face my fear of this subject. Thus the writing of this post.  God has been faithful to prove to me that when I am unable, weak, tired, out of ideas He is always ABLE.

We are really just beginning the parenting journey with a 7, 4 and 1 yr old.  I can't say how things will end up with our family, but I pray that the Lord will be pleased to use our family in some way to defend the cause of the fatherless (Deut. 10:18) and set the lonely in families (Psalm 68:5-6).

If you are interested to learn more about Foster Care, Adoption, and Orphan Care check out these sites:

(video streaming presentation)

ShowHope

Cry of the Orphan

I Care About Orphans

Focus on the Family

Vacation 2010

Photo memories coming soon...

He's Walking!

Untitled from patty hull on Vimeo.

Kick It!

He did it!  Our thumb sucker kicked the habit after only 2 days of trying.  With the help of this:

We have countless pictures of Josiah with his thumb in his mouth.  Now that he is 4 years old, we all agreed it was time to give this one up.  He was a champ!  After only 2 days of tasting the yucky tincture, no more thumb is needed.

He still has cow.

15 months

Levi gets more funny every day!  His little personality is really coming out, and he is turning out to be a feisty one!

Still not walking but standing on his own very proudly.  He likes to stand and push a giant ball back and forth with us; Gigai (my mom) taught him this one.  This motivates him to stay standing more than anything.

 He loves balls!  In fact, it's one of the few words he says over and over all day long.  He points to balls, he smiles at them and crawls very fast to get one.  In the store today he giggled and giggled as I tossed him a soft football and he threw it back to me.  He thinks this is the best game ever!

His other favorite thing is eating.  Man, can he put some food away!  He's only 20 lbs and already eats as much as Josiah.

Some of his signs include:  more, up, bed time, ball and milk.  I think he understands many, many more but  just refuses to use them.  Could it possibly be a stubborn streak?  :) 

He says: momma, daddy, Abby and ball.  I'm sure he is saying more than this, but it's unrecognizable at this point... and very cute indeed.

His hair is getting longer and more curly in the back... especially when he smears food in it.  We've started putting shoes on him for the first time in his short life and he's not sure what to think of this.  At first he cried and started shaking his feet, then he stood up and seemed proud of himself.  He looks so adorable in shoes!  We don't make him wear them very often, but I suppose now that the weather is getting cooler he will be learning to like them.

Such a sweet little doll.  He still loves to cuddle!!