Mountains and Mustard Seeds

our hero

2012-02-12T18:55:00.000-06:00

This little warrior woke us up this morning to tell us Abby was having a status seizure.

Minutes later ambulance. ER. Meds. ICU.

Sweet, sweet boy.

10 years of Signing Time!

2012-01-25T14:22:00.001-06:00

In our journey of raising a deafblind child this tool was incredibly encouraging! We were introduced to Signing Time when Abby was about 2 years old during an evaluation with a deafblind organization. After ordering our first 3 volumes of Signing Time we were hooked. We finally had a fun and useful tool to help our family learn to communicate with Abby.

Although we have to adapt ASL signs to be able to do them into her hands (b/c of vision loss), this was a step in the right direction for us. After our #2 child came along and watched the DVD's with us we were amazed how quickly he picked up the signs too! By the time Josiah was 2 years old he could easily and clearly communicate with us what he needed/wanted. And, I have to add, signing with Josiah Enhanced his speech and helped his vocabulary at a very early age. I remember being warned by well meaning folks that using sign language with children would delay their speech. Not so! Josiah is a very verbal child.

I enjoyed watching the interviews with the creators and cast of one of our favorite shows, and thought some one out there might as well.

*(pause the ipod at page bottom before viewing)*

My night stand

2012-01-12T15:08:00.000-06:00

I was thinking recently about books that I want to read this year, but first wanted to reflect on my night stand in 2011...

Many of these books helped to redirect my attention towards my loving Heavenly Father on days that I felt like giving up. Some were rich with encouragement straight from scripture, giving hope. Others helped me gain back a thankful heart, regardless of circumstance.

My (hopeful) list for 2012...

Dossier complete!

2012-01-05T16:47:00.000-06:00

This week we put the final touches on our Dossier, double and triple checked signatures, packed it up with love and sent it off to our agency! Wow, what a relief. So much time and energy and prayer has gone into this package of papers... we were almost afraid to let it go. Would it be weird to frame a copy of it? It almost feels like we should expect some sort of reward for the 8 months of effort we put into it. Wait, we will! A new little person to add to our family!

A brief run down on what's in our Dossier:

Adoption application
Birth certificates- verified/notarized, out of state certified
Marital Status Certificate- verified/notarized, out of state certified
Certificates of profession
Certificate of Income and Property
Health examination certificates
Certificates of no-criminal records- up to date police letters
Homestudy report
CIS approval- very important and last piece!!
Copy of passports
Family photographs- 8-10 pics of our family living life
Passport size photos- 2 photos each

Now we wait for the final certifications and authentications needed. We'll keep you posted on the next big step- DTC: Dossier To China!

New Fun

2012-01-05T16:05:00.002-06:00

The kids got a gift this Christmas they've been wanting! We were very thankful when a friend offered to give us theirs. (Thanks Steve!) Since Christmas we've ALL enjoyed bouncing and laughing together on it.

When the weather gets a bit warmer I think Abby will like it too.

11 Years!!

2011-12-30T20:41:00.000-06:00

As this year comes to an end, we step into a new year of marriage! Today has been a special day at home with just our family remembering over these past 11 years together. It doesn't feel like it's been that long since our wedding day! What a wonderfully fun and memorable day that was!

Looking into the New Year brings a sense of anticipation along with a little apprehension at what might come. Along with those feelings today especially we are Thankful for each other, and for a Heavenly Father who cares about our lives and holds our future in His hands!

Patty with Dad (Job)

Bill (L) and Patrick

Merry Christmas

2011-12-28T19:42:00.002-06:00

Create a digital slideshow

Immigration Speed Bump

2011-12-22T23:18:00.000-06:00

Last weekend we opened a very important envelope in the mail! Our immigration (I800-A) approval finally came! (2 months 1 week and 6 days of waiting) This is a very important piece of our adoption paper work collection, and the last form we needed before sending off our Dossier to our agency.

After we all did the happy dance, I read the fine print before carefully placing it with the other papers. My heart sank when I noticed the error! After a few moments of panic, and 2 days of phone calls and emails, we have figured out how to correct our form.

Although it was a big discouragement this week, as we thought we were on a roll and about to finish the Dossier, we recognize delays and hick-ups are part of the adoption process. Today we got up and dusted ourselves off and feel a peace about the delay. One more step towards the pursuit of our child!

Love without boundaries

2011-12-16T14:02:00.001-06:00

Christmas is just around the corner, and as we gear up for this celebration I wanted to share a short video about a special place in China. These people care for vulnerable children with cleft lip and palate. It's neat to see how the Lord cares for these precious children through Love without boundaries while they wait for their forever families!

Since we are nearing the end of our adoption "paper chase," it's a fun time to think about our new child waiting for us... maybe a child like one of these:

"Trouble"

2011-12-13T17:54:00.000-06:00

Abby's first board game! Makes this mommy smile.

Orthopedic clinic

2011-11-23T07:50:00.001-06:00

Yesterday Abby had her yearly orthopedic check up. We got x-rays of her hips to take with us. He usually checks her hips, the tightness in her legs and her back to see if there are any changes. We also get our scrips for new orthotics when we see him.

This year he noticed on her x-rays that her hips are slowly starting to come out of joint. It's a common problem with people living with CP. He told us it can cause pain, especially as the child grows. There's no amount of stretching, or casting, or special positioning that can stop the progression or improve it. He said the only way to treat it is with surgery. At this point he doesn't recommend it for Abby, mostly because he doesn't want to put her through it.

Although I wasn't expecting to get this news, I'm not totally surprised. Living with cerebral palsy affects every part of one's body. From head control all the way down to problems with the toes. He explained that the increased muscle tone in her legs will just cause the leg to be slowly pulled out of socket.

Now we'll need to pay attention to how she reacts to diaper changes and position changes. It could become painful for her.

Thankfully she has been doing really well lately! Her seizures are mostly controlled and she seems content again.

One day at a time...

Florida 2011

2011-11-23T07:36:00.001-06:00

Last month we had a wonderful time at the beach! The weather was perfect, the sand was soft and the water was mostly warm. We spent time digging in the sand, swimming in the pool and hot tub, reading, taking walks down the beach and working a puzzle.

Josiah and aunt Connie did some crafts together, which he loved! Levi enjoyed being destructive in the sand and surprising everyone with his fearless leaps into the pool. Abby loved the warm hot tub and bubbles!

It was great to be able to relax and sit down together with no agenda and just visit.

sitting around our camp fire

Biometric Fingerprints

2011-11-17T07:30:00.001-06:00

very excited after our fingerprinting!

Trying to catch up on the events of this past month! So much has happened.

One huge blessing occurred on our way to Florida (before Abby's event). We had received our invitation from USCIS (immigration) to come to their office in Birmingham to have our biometric fingerprints taken. Well, of course the date was set for the week we were going to be enjoying the beach! This was a big disappointment as we had been waiting for this letter to come in the mail.

We prayed. We prayed for a solution. I found a few people on an adoption forum talking about 'walking in' to get their prints done. So we asked our heavenly Father for the opportunity to walk in to the office in B'ham the day we started our trip, not on our scheduled date.

On October 21st we walked into the office and both got our prints taken, no problem. As I was sitting in the waiting area the man at the computer told the guard at the door, "no more walk-in's today." I guess we barely squeezed in! Praise the Lord!

Seizures in paradise

2011-11-08T16:35:00.001-06:00

October has become a very special month for our family. Because of the good prices, and Fall break for Aunt Connie, we all head down to beautiful Florida for our yearly family vacation! We look forward to this week all year long and always have so much fun together.

It is also (unfortunately) becoming our tradition for Abby to have some sort of crisis on our way to paradise. For some folks, you might remember our exhausting trip last year where she started getting sick on our way down and had seizures all night in our hotel. Last year it turned out to be strep throat.

This year we had a de ja vu experience in the same hotel! Again she started running a fever at bed time and started having seizures. For the following 4 hours she had some strange, repetitive behavior we weren't familiar with. After holding her and watching her have these new seizures for 2 hours we finally gave in and administered her emergency seizure med (Diastat). After 20 minutes or so she started to calm down and finally fell asleep.

With the room quiet again I just laid in bed, listening to her breathe. After 2 hours had passed and I was starting to get dizzy with fatigue, she woke up and started back into her strange behavior pattern. At that point I knew something needed to happen. So in our typical, familiar, half-panic mode we talked with our neurologists' nurse who instructed us to take her to the ER.

At 4 in the morning we loaded up our many bags and 3 small children to drive the 1.5 hours back to Children's hospital. As expected Abby went through the typical pokes, prods, caths, x-rays and CT scan in search of a cause. Everything was fine. Shunt looked good. She finally conked out after all was said and done in the ER and slept.

To top off this 'special' day Levi fell in a wagon at the hospital and chipped his two front teeth.

This was the start to a very long trip, but what turned out to be an amazing family vacation.

Hearing test

2011-11-06T15:02:00.000-06:00

Several weeks ago Abby had another hearing test, a repeat of the main test she had when she was just released from the NICU at six months old.

The typical hearing testing done on kids her age involve a sound booth, and the use of toys and lights to see what they can hear. This doesn't really work for Abby and is very difficult to determine what she hears or doesn't hear so that her audiologist can program her hearing aids appropriately.

Since it's been about 6 years since she has had one, we felt it was time to do another ABR test: Auditory Brainstem Response. She had electrodes on her head hooked to a machine/computer. Sounds were given through a tiny earphone placed inside her ears. When a sound was presented the machine measured her brain's response and the audiologist is able to determine how soft or loud the sound needs to be in a certain frequency for her brain to give a response.

Overall this took about 3 hours. As the audiologist read her results she stated that Abby's brain responses weren't typical and that she 'dances to her own tune'. If only I had a dollar for every time I've heard that!

The good news is that her hearing doesn't appear to have gotten worse, which can happen. She has a sloping severe to profound hearing loss, meaning she hears slightly better in the higher frequencies (4000 htz), creating an upward "sloping" picture on an audiogram.

To give a comparison: typical children can hear as low as 5-15 decibels. Abby's test showed she can hear in the 80-95 db range (500-2000 hz) with a slight rise to 65 db at 4000 hz.

Below is an Audiogram that shows on a graph what we typically hear at what frequency and decibel.

More about ABR testing for those interested:

Swim Results

2011-10-13T15:44:00.001-05:00

Thank you to everyone who sponsored and supported Patrick for his Big open water swim! He did great.

The weekend started out with a fun camp out with friends near the swim site. We even got to visit with family living in the area who came to cheer Patrick on. The kids played in the dirt, ate s'mores and enjoyed sleeping in tents.

our tent

part of our camp site

It's so nice to sit around a warm fire on a cool night, talking with good friends and eating yummy sweets.

We all got up early to start packing up the camp site and the guys headed down to the water. Patrick got off to a good start but had some trouble with his goggles around mile 5. Thankfully Dave was able to fix them enough for Patrick to finish the event. This hick-up threw him off a bit on his time and focus.

He came in 17th out of 40 swimmers! Total time was 4 hrs 23 min. Wow. We were all so proud of him! It was a beautiful Fall day, although he said the water was pretty cold.

Patrick nearing the finish with his pilot, Dave

Everyone watching for our guys

Good friends- minus one child who wandered out of the picture

With that behind us we move forward on this adventure waiting for our 4th munchkin. As of today we are checking the mail daily for an appointment in Birmingham to get our biometrics fingerprints done. With this finished we wait for Immigration to approve us to adopt a foreign child.

After that is done, we can finally put our Dossier in the mail for all the certifications and authentications required. Whew! So much paperwork.

Below is a video of the event:

Sink or Swim...

2011-09-29T22:23:00.002-05:00

He's diving in!

Patrick has been training for an upcoming open water swim. A BIG event! On October 8th he will swim 10 MILES in the "Swim the Suck" TN river gorge event. (It should take about 4 hours!!)
Our good friend, David Clark, will be Patrick's "pilot," paddling beside him all the way in a kayak. He will provide snacks, water and harassment/motivation!

Why? Patrick loves a challenge. But most of all to honor our upcoming adoption! For those friends who have wanted to partner with us on this journey, you can sponsor Patrick for each mile he completes. Donations will be applied to adoption agency expenses at Lifeline Children's Services.

The Goal? To finish well, and to raise awareness of God's love for orphans. He promised in His word: "I will not leave you as orphans; I will come to you." John 14:18

In view of God's love for us, we look forward to holding this new child... and becoming his/her forever family!

Adoption has been on our hearts since before we married. God has led us to adopt a child with special needs from China for many reasons. Growing up in China (for me) has a lot to do with it! Raising and loving Abby has also caused us to see life with new eyes.

How to Sponsor:

Check out the "ChipIn" widget on the side

Home Study Complete!

2011-09-25T10:39:00.000-05:00

Yes! The first BIG portion of our adoption process is finished. Whew!

The past 4+ months have been filled with paper work, questions, social worker visits, W2's, and hours of reading and education on international adoption issues. We've really enjoyed the process and feel like we've learned so much. Going into this journey Expecting some complications was helpful, especially when I had to go down to the police station for a third time to be fingerprinted! Apparently my prints were terrible due to lots of hand-washing... can't really be helped.

Josiah helping me put together 'most' of our home study paperwork.

Now we move forward to apply for our Citizenship and Immigration clearance. While we wait for this to be processed we will be preparing our Dossier. This is the group of documents that will be notarized, certified and authenticated before being sent to the China Center of Adoption Affairs. Once this happens we will be officially "logged in" with the Adoption Center and will wait for our referral!

All of this takes a lot of time and waiting. So, we have plenty of opportunity to read up on adoption related issues. We want to get some good children's books on adoption so we can be openly discussing this during the next several months. Josiah is already very aware of the process.

Any suggestions about books on this topic are welcome!

We already found a lending library (APAC) that has many good resources we can borrow.

This definitely is an adventure!

Kindergarten!

2011-09-21T15:06:00.001-05:00

We started Kindergarten with Josiah recently at home! It's been fun, interesting, challenging and an adjustment for everyone. Since we are truly beginners at homeschooling we went with a complete curriculum (Sonlight) that provides everything we need for the year. And I mean everything! Down to the paper clips and clay used for the science projects. This is very helpful for me, since I'm not creative at all.

This is week #5 for us and we've already made some mistakes, gotten behind and made a few tweaks to the schedule in order to make it work for us. I'm convinced it will take at least a year before I'm comfortable with how things go during the day. I'm enjoying the time with Josiah, watching him learn and seeing him get excited about new concepts, and reading good stories. But, don't get me wrong. We've had our tearful days and bad attitudes... and I do mean WE!

It's fun getting Dad involved when he gets home too. J loves for Daddy to read to him and help him with his math book. Daddy is just better at things after a long day with Mommy. :)

It's been interesting peppering J's lessons between Abby's 7 weekly appointments. He's not able to do any of his work unsupervised, so we are all learning together. Patience truly is a virtue I'm in desperate need of these days! My need for the Lord is incredibly tangible and I'm reminded of His promises every morning.

creating letters with wooden shapes- "Handwriting Without Tears"

Math!

Happy 8th Birthday Abby!

2011-09-03T06:34:00.000-05:00

Dear Abby,

Today you are turning eight years old darling girl. How did we get here so fast?

You have had a good year overall and we are so thankful for relief from the reflux for you. Your desire to communicate has blossomed and we see your sweet personality more and more each day. You are getting bigger and now weigh about 36 lbs! How we remember celebrating every ounce that you gained in the beginning.

One Big thing we celebrated this year was making it 12 months without any BIG seizures!! We have prayed for you to be free from these awful seizures and the Lord answered! Each time we drive by the pediatric ER I say a prayer of thanksgiving. We haven't had to rush you there in a long time!

You started the second grade a few weeks ago and continue to learn and grow with the help of some special teachers. It's fun to see you take interest in certain toys. Just the other day you held your little curious george monkey for almost 10 minutes straight!

We are so proud of you! Your life has touched so many people and we just adore you.

We love you soooo much!

- Dad and Mom
(Josiah and Levi too)

Family week in the Smokies!

2011-08-12T14:49:00.000-05:00

Last week our family met up with Papa and Grandma (Hull), Matt and Connie at a wonderful cabin near the Smoky mountains. It was a special time together of wading in the river, hiking up Clingman's Dome, cooking together and lots of playing pool (for the guys)! I think it was just what our family needed...

Levi's favorite- rock throwing + splashing!

Having trouble sleeping... hmmm

Visit with Dad!

2011-08-12T14:32:00.000-05:00

Last month we had a wonderful visit with "Pipai" from China! We had a great time together catching up on this past year and discussing the possible future including more time together. All the cousins enjoyed having Pipai nearby as they played together. The kids each got their own turns riding in the Cobra! Such fun.

Can't wait for our next visit from our China Granddad!

Norah Rose wearing her Chinese hat!

Waiting patiently for their turn...

Praying for Papa

2011-07-27T13:35:00.000-05:00

I've gotten very behind in posting and have several "pending"... but this week our thoughts are with our Papa. He continues fighting his cancer battle but has gotten some very difficult news this week.

Prayers for Papa and Grandma are peppered throughout our days and nights. Josiah is starting to grasp the heaviness of our hearts. He is so sensitive and able to detect our emotions in the absence of words.

We love you Papa!

Josiah Reading!

2011-07-20T16:05:00.001-05:00

(pause ipod at bottom of page)

Yard Sale Fundraiser

2011-07-18T07:53:00.000-05:00

A few weeks ago we had a HUGE yard sale! Everything was donated for adoption fundraising, from clothes to toys to kitchen gadgets. Thanks to the help of many friends and donations from family and even folks we don't know, it was a fun and successful day!

Most of my photos from the day are of friends helping out. Since I don't have permission to place their beautiful faces here on the blog, these are all I have to share for now. But, I think you can get the general idea!

We felt so blessed after that weekend was over! The Lord is providing for our family in so many ways. We are getting excited to meet our new munchkin!

letters to Abby

2011-07-01T08:19:00.000-05:00

A few weeks ago Abby went to Sensory camp at UCP. We really missed her here at home, and after the week was over Josiah wrote her a letter:

"Dear Abby, this is from Josiah. I love you very much and I missed you while you were at camp. And then I love you as much as the sun is high.

I’m glad I got to go to camp with you today Abby."

He has been "writing" us letters lately that are both hilarious and sweet. I'll try to post more of them as they come. One that he brought us the other day had a picture of "grumpy mommy" among the rest of the family, all smiling. Hmmm. I guess I need to work on that.

Conversation in the car--

Josiah: "Abby needs to feel my legs when we get home."

me: "Why's that honey?"

J: "Because they are covered in ant bites and she would like to feel that. She might think it's a braille book!"

How thoughtful! Five year olds are so funny.

Announcement!

2011-06-20T14:40:00.001-05:00

Another Munchkin will be joining our family... but not in 9 months!

More like 12 to 48 months.

We are Adopting!

(more details to come...)

Happy 2nd Birthday Levi!

2011-06-17T14:38:00.000-05:00

Dear Levi,

One year has turned into two since you came into our lives. Having you with us brings us so much joy and laughter! You are such a fun little boy.

This year you have mastered climbing things, jumping off the couch, pretending to be bat man and lots of other new skills. You make us laugh when you say "Whoooaaa" while you are swinging or jumping off something! It makes us smile when you say "Peas" (please) and "Ank You" (thank you). You melt our hearts when you say "Abu" (love you)!

You have become such a big boy these past several months. Getting your hair cut was a big day! You had such precious curls.

Daddy loves holding you whenever he can... especially during church when you cry in the nursery. He's teaching you to have fun in the water this summer, and to swim! I love watching you play with 'Siah and holding you when you first wake up, even if you are grumpy. Today you made me smile when you put Abby's rubber bands on top of her head when I stepped away... I knew you were trying to help.

You are precious to us and we can't imagine not having you in our family! We belong together, just like the song says in your Birthday video.

Love you buddy!

Daddy and Mommy, Abby and Josiah

Untitled from patty hull on Vimeo.

5 year old

2011-06-14T07:44:00.000-05:00

Faithful

2011-06-10T21:56:00.001-05:00

Our family has entered a season of calm that we have longed for.

Months of discomfort and struggle for our girl have finally quieted and she is-- happy. I can't begin to describe the longing we have had for her to experience peace in her body. The nights of tearful prayer pleading with our heavenly Father for an answer.

Now we find ourselves in this strange and wonderful place! Our little girl is comfortable... and peaceful. She is sleeping and playing again. She is tolerating her feedings again.

Psalm 145:17-19

"The LORD is righteous in all his ways and faithful in all he does. The LORD is near to all who call on him, to all who call on him in truth. He fulfills the desires of those who fear him; he hears their cry and saves them."

This has been our prayer for Abby.

He is faithful and has answered this request for her. Praise Him!

I have treasured some music that has ministered to my heart during seasons of struggle. From a heavy heart I heard the Lord speak to me of His promises and His love for Abby.

FAITHFUL

I am waiting for the rescue

that I know is sure to come,

cuz You are faithful.

Yes You are faithful.

I've dropped anchor in Your promises,

and I am holding on,

cuz You are faithful.

God You are faithful.

I will proclaim it to the world.

I will declare it to my heart

And sing it when the sun is shining.

I will scream it in the dark.

You are faithful!

Though I cannot have the answer

that I'm wanting to demand,

I'll remember You are God

and everything is in Your hand.

In Your hands you hold the sun, the moon,

the stars up in the sky,

for the sake of Love, You hung Your own Son

on the cross...to die...

You are faithful...
Yes, You are faithful...
When you give and when You take away,
even then, great is Your faithfulness!
Great is Your faithfulness!

Steven Curtis Chapman

(top photo courtesy of- http://www.noushinblog.com/2008/10/morning_light.htm)

44 of Every Kind of Cupcake

2011-06-06T21:04:00.001-05:00

Josiah Hull Serves: 4 or 5

Age: 5 years

Icing Cupcakes

100 gallons sugar 40 gallons honey

1 yummy, yummy ostrich 8 gallons holly crust tree

40 m&m s

Wash your hands. Turn the lights on so you can see what

you are doing. First make the icing. Put the sugar in a

bowl, then go outside and shoot a yummy, yummy ostrich

that has candy inside of it. Bring it inside the house. Mix

the candy that was inside the ostrich with the sugar for

two hours.

Cupcakes: Put the honey and the holly crust tree in a

bowl and mix them together for 40 minutes. Set the timer

for 40 minutes. Then put the cupcakes in the stove and

set the clock for 40 minutes. After 40 minutes, ring the bell

because you need to know when they are done. After

you cook the cupcakes, put the m&m’s inside them, and

then put the icing on.

Put the cupcakes in four boxes and deliver them to

everyone in the neighborhood.

Relay for Life

2011-06-04T09:04:00.002-05:00

Patty and Levi looking at Steve's Luminarie

Friday night our family participated in the relay for life, in honor of Papa (Sam Hull), Lynn Estrada (friend), Sally (friend) and Steve (cousin). We all had matching team shirts!

Levi's 1st Hair Cut

2011-05-25T21:41:00.000-05:00

Today is the day! Our baby is officially a toddler. It's surprising how a little hair cut can make a baby into a boy.

So cute!

Soy to the rescue!

2011-05-21T13:19:00.000-05:00

So we've switched AGAIN to a new formula for Abby. She was having such a hard time on the Pediasure, although it took us a while to narrow down the problem.

How do we know?

She wasn't sleeping well, still biting her fingers and crying often, and a few other personal issues.

Since switching to the Soy formula along with adding a ton more water to her daily diet (in cooperation with her dietician) we have come to what seems like a solution! She is sleeping better and seems happier, most of the time.

Yea for Soy!

23 Months

2011-05-19T07:21:00.001-05:00

Spring is in full swing and our littlest munchkin is almost 2!! It's hard to believe he is so big.

And no, we haven't cut his hair yet... stay tuned for that coming soon!

In this 23rd month he is developing his speech more, continuing to climb like a monkey and becoming a typical picky eating toddler. His giggles are deeper and his smiles seem bigger! Levi is our best sleeper and continues to sleep through the night and often doesn't wake up until 8 am.

He and his brother are becoming better friends and figuring out how to play (and fight) together.

One thing about Levi that is unique... he's a screamer! Yes, he can scream with the best of them. He screams when Josiah gets in his personal space, he screams when we tell him the snacks are gone and he screams when he's told he can't go outside. And yes, we are working on this.

Levi is our rough and tumble boy. His newest trick is to climb on the ottoman, hands raised in a diving pose and literally dives off into pillows! And he says "whoooooaaahhh" all the way down.

The wedge

2011-05-13T18:10:00.000-05:00

Abby has trouble holding her head up due to her floppy CP. Now that she is growing taller it seems her head lags forward even more than before, especially when sitting in her wheel chair.

To help strengthen her back and neck muscles she spends time on The Wedge! (the boys think it's a slide... I'll try to get them on video soon playing with it and the couch. It's pretty funny)

It's not her favorite thing to do, but she is definitely motivated to get off!

You can tell she's working hard when her hair gets messed up!

"Stuck!"

2011-05-10T14:15:00.000-05:00

Today during nap time I found this happening along with cries of "stuck!" Apparently our littlest munchkin thinks he's too big for a crib.

One Year Miracle

2011-05-04T11:09:00.000-05:00

A huge milestone has been met! As of last Thursday, Abby has made it ONE WHOLE YEAR without a status (prolonged) seizure!

This is a miracle for us.

After her emergency shunt revision last April she had a big seizure the next day that sent her back to Children's in a helicopter (in this post). But since that day...

No ER visits (for Big seizures)!!!

Yesterday Abby and I trekked back down to Birmingham for her one year neurosurgery check up. CT of her brain looked good and we got to share the great news with her surgeon and all of his staff. They were thrilled too! Especially after the commotion we caused at last year's visit!

This is huge for our family. Going from ER visits about every 3 months with a seizing Abby to none at all for a whole year!

This is cause for a celebration!

Lights Out

2011-04-28T17:09:00.000-05:00

Storms barreled through our part of the country leaving behind destruction and loss.

We are thankful to be in tact and are learning to enjoy our "camp out" at home.

Abby had her surgery follow up appointment today and we barely made it to the hospital! Since the power is out there is no gas. We just didn't realize how far south the power was affected.

2 blocks from Children's and running on fumes we have never been so relieved to pay a small fortune for a fill up!

Due to her recent tummy troubles and digestion issues the dr. ordered a belly x-ray. Nothing to be concerned about from a surgery point of view. He will see her again in 2 months to follow up.

We need to give her gut more time to recover from surgery, and possibly consider a different diet.

Sent from my iPhone

March for Babies!

2011-04-18T14:54:00.000-05:00

Shout out to the wonderful nurses and staff at East TN Children's Hospital who took part in the March for Babies event this past weekend! We had planned to attend but for various reasons wasn't able to. Next year.

We love you all!

How to slide...

2011-04-13T14:43:00.000-05:00

Getting in position

Wheeee

Tada!

Camping!

2011-04-13T14:39:00.000-05:00

This past weekend we headed up to TN for some time with family. We managed to enjoy a fun camping trip with Papa and Grandma! One more fun weekend before Papa starts his cancer treatments.

Abby did pretty well while camping. We weren't sure how she would do sleeping in a tent and just not being home. Overall it was great! We took it easy on her feeds, mostly giving Pedialyte during the day and formula at night. She slept great and seemed to enjoy being outside.

The boys of course loved it! Hoping this is the first of many camping trips!

Roller coaster revisited

2011-04-06T18:01:00.000-05:00

Once upon a time we were told having a preemie is like being on a roller coaster. And you can't get off.

Unexpected events happen that turn you upside down and inside out. Emotions and fears well up inside that you didn't know existed. One day the sea is calm and peaceful the next it becomes a raging storm.

Countless days this roller coaster analogy has been true for us.

Abby did great post-op and seemed to be tolerating her feedings very well. The day we reached her goal feeding rate something changed and we found ourselves back on that dreadful coaster.

Without going into all the details of the past several days I'll just say that she has been miserable. Hours of inconsolable crying, finger biting and frustration. The pain medicine didn't touch it. Nothing helped.

With her feedings turned off we sat together through Monday night into Tuesday morning, crying together and praying for relief. She finally gave up at about 8:15 am and slept until her scheduled neurology appointment. This sweet doctor took special interest in her discomfort (although unrelated to her seizures) and called our pediatrician for a consult. He came and checked Abby out (at the neurologists office!). One of many ways God extended His mercy yesterday.

Finally exhausted!

Nothing seemed to be obviously concerning. We had been worried about a possible bowel obstruction, especially considering her history of bowel disease (NEC with perforations as a baby) and recent abdominal surgery. Thankfully this was ruled out! whew.

Although we don't really know what caused all the distress we do know it is related to her feedings. After 36 hours on Pedialyte only she is peacefully resting and seems comfortable at last.

There are a few theories floating around in my brain about what this could mean, but ultimately it only brings us to a place of true surrender once again. Yet another reminder that Abigail Christina is in God's hands and her circumstances are out of our control. Of course our prayer continues to be for her health, growth and comfort. We are slowly learning to find peace in His presence alone, even when deliverance doesn't come.

Jeremiah 17:7-8

"But blessed is the man who trusts in the Lord, whose confidence is in Him. He will be like a tree planted by the water that sends out it's roots by the stream. It does not fear when heat comes; it's leaves are always green. It has no worries in a year of drought and never fails to bear fruit."

Oh, to be like that tree!

Happy Birthday Josiah!

2011-03-30T13:44:00.001-05:00

Untitled from patty hull on Vimeo.

Josiah you turn 5 years old today and you are very excited about it! For some time now you have been anxious to be 5. The other day you asked me if you would burst out of your clothes on your birthday! You figured that you would be growing a lot that day.

You sure have grown into a wonderful 5 year old boy! We marvel at you daily. Wondering how you come up with some of the funny things you say. Enjoying hearing you talk to us, telling us things that are important to you. We love watching you play and wrestle with Levi, tenderly helping him when he needs it. You are trying very hard to 'play' with Abby lately too. I think you are learning to understand her more and hoping to engage her in your world of play. It's very sweet to see you hold her hands or bring her toys. It makes me smile to see that you have placed her baby doll in her bed, long after we've turned out the lights.

You are such a joy! Your giggle is so contagious and your smile melts our hearts.

We love you to the moon and back... 1000 times!

Love,
Mommy and Daddy

ps. music in video requested by Josiah: especially Yesu Azali Awa by Selah!

Recovery continued

2011-03-27T12:47:00.001-05:00

Abby and I are home alone this morning as our boys have gone to church. It's nice to be just the girls for a while.

She is recovering very well and each day seems to be more comfortable for her. Coughing has become a problem and she seems to have a lot of chest congestion. The coughing hurts I'm sure so she is hesitant to do a big cough to clear her lungs. Today each breath seems to bring on a very weak cough. I can tell it's tiring her out.

I'm trying to change her position often to help her cough better and move the secretions. They sound pretty thick. Praying it doesn't develop into anything.

Her incisions look wonderful!

The best part of all is that her fingers are healing! She isn't biting like she used to which is a huge, huge praise.

Feedings are still going well and she is almost to a target continuous rate during the day. We'll probably stay on continuous until she is fully healed and then gradually introduce small bolus feeds again. The thought of not having to drag the feeding pump everywhere we go really excites us!! Carrying Abby, minus her tether, will be so much easier. Hooray for improvements!

Day 4

2011-03-24T08:46:00.000-05:00

Last day on the 6th floor!

Abby had a wonderful night and slept straight through after getting some Tylenol with codeine. That stuff rocks!

Her feedings are going well. We very slowly increasing her rate and she is doing great with that plan. Eventually we want to get back to all bolus feeds during the day, but it's been a few years since we have done that and feel a little apprehensive about pushing things too fast. One day at a time.

Her IV is out and we are ready to go... just waiting on discharge papers!

Day 3

2011-03-23T10:11:00.002-05:00

Abby had a mostly restful night. Yesterday she had a few restless hours and was hurting and we couldn't get her comfortable. We finally figured out she wanted to sit in her stroller instead of the bed. Once she got settled and medicated she slept there for hours!
Today she seems more herself. Moving her is still painful and she's trying to cough up some congestion which is also uncomfortable for her. But she's really doing great overall!
Today we start feedings. So far she has tolerated small boluses of Pedialyte. If we can get her up to full feeds she can come off the IV fluids and go home!
Sent from my iPhone

Day 2

2011-03-22T11:50:00.000-05:00

Abby had a pretty good night. She woke up a few times with pain and stayed restless for a few hours, but the IV meds are working their magic. It scares her when she tries to cough and is caught off guard when it hurts. Poor baby, I wish we could explain it to her!

Surgery made their rounds this morning nice and early (5:45 am)! They thought she looked good and said we could clamp off her g-tube drain and vent her periodically instead. The plan is to start feeds back slowly tomorrow and see how she does. We are giving 2 of her seizure meds through the tube and she's keeping quite a bit of residual in her stomach, so I'm glad we aren't in a hurry to push feeds.

It's been a good day so far. She was agitated for a few hours this morning after moving her around, changing her diaper and getting her cleaned up a little. She came back from surgery with a tan 'beard' residue left on her face from being intubated. It took a little scrubbing to get that off.

Another praise: no seizures! They had some trouble getting her VNS turned back on to her original settings and we were a little concerned that might cause problems for her during the night, but she has done great. I found myself really praying during the night when she was agitated that she wouldn't go into one. That would hurt!

The staff here has been wonderful and very quick to respond to her discomfort. So far we have loved all of her nurses and they are taking great care of our girl.

Thanks for all the notes, emails, messages and calls of encouragement and celebration! It's always nice to feel a connection with friends and family during hospital stays. We love you all!

Hope to be home tomorrow night if all goes well with feedings tomorrow!

Post-op

2011-03-21T16:13:00.000-05:00

Praise the Lord! Surgery is done and all is well in room 691.

The surgeon was doubtful that he would be able to perform the Fundo laparoscopically and warned us that some kids aren't able to have the procedure completed because of scar tissue complications. He did have to 'cut down' quite a bit of adhesions and the procedure took about an hour longer than expected, but it's done!

He said her previous wrap (Fundo or 'stomach wrap') was completely undone which was the reason she was having so much discomfort and pain with feedings.

After 2 hours of praying and waiting he came back with such wonderful news, we almost danced! No complications with bleeding or anything else. We also learned that they do more of these procedures here at this Children's hospital than anywhere else in the country! We came to the right place.

Abby is resting peacefully now and will be getting IV fluids and pain meds through tomorrow. Feedings won't start back until some time tomorrow or the next day, depending on her recovery. And hopefully now they will be pain free for her!

We are breathing a huge sigh of relief today!

Thank you for all of the loving and compassionate prayers lifted up! We felt every one. Abby was calm before the procedure and peace is filling our room as I type. The Lord is good. And we are so thankful!

Waiting for surgery

2011-03-21T10:03:00.003-05:00

No fever this morning! (taken with hipstamatic ... magic of iphone)

Countdown to relief

2011-03-20T14:44:00.001-05:00

Flash back...

Abby after her open Nissen Fundo procedure June 2004

Tomorrow is the big day. Abby's surgery is scheduled for 9 am and we need to be there for pre-op by 7 am. The plan is to attempt a laparoscopic Nissen Fundoplication. Due to Abby's multiple, previous, abdominal surgeries (6) there is a possibility that the scar tissue present will prevent this from happening. The doctor will then have to revert to an open procedure which will make recovery much harder for Abby.

An open procedure would mean he would make one long incision down her abdomen as opposed to several tiny incisions. She had the open Nissen at age 9 months and it helped her tremendously. She was failure to thrive before the surgery. This is also when she got her G-tube.

This weekend our family has had a cold, and Abby has been sick. She's been running a fever (100.6-101.4) since Friday night and has had over 16 seizures. We are praying her fever will clear before tomorrow morning. Although we recognize once again that Abby is in the Lord's hands... we have NO control over the situation. We know He has heard our requests.

Today we are home, preparing for the next several days and trying to rest. The boys are a little under the weather and fussy, but nothing too terrible.

Praying earnestly that tomorrow will bring comfort and relief to our sweet heart!

Thank you to all who are praying!! We love you all.

The following video explains a little about this surgery:

Oatmeal feast

2011-03-20T13:11:00.000-05:00

21 month old Levi eating breakfast.

Untitled from patty hull on Vimeo.

A Promise

2011-03-18T17:23:00.000-05:00

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

-Matthew 11:28-30

Trust and rest

2011-03-15T15:45:00.000-05:00

I've hesitated posting much about Abby lately for many reasons, but the Lord has been teaching me some things I think I should share. It's hard to describe how things have been simply because it changes from day to day. Depending on her comfort, or lack thereof, and the state of my heart in the midst of difficult days I often lose the words to say.

I think I have learned to compartmentalize. To place certain hurtful or difficult things into neat little places in my brain where I can retrieve them if asked, separating my emotions from said retrievals.

Maybe it was a skill I learned while working as a nurse. Taking care of real women and real babies, who often experience real problems during labor and delivery. Removing my fear and emotions during a stressful situation in order to think clearly and care for that person appropriately. Or maybe it's just my way of coping with memories that hurt, but still have to be dealt with because their effects still linger in my sweet girl.

There are so many longings I have for her. Longings to see her free from struggle, free from pain and discomfort. I find myself striving to fulfill these longings in any way I can-- worrying and fretting seem to help. Stifling tears and plowing ahead also tend to keep me going. But then the occasional day arrives when I find myself exhausted and tearful, letting my mind wander to those hidden places I'd rather forget. Fearful of the future full of dark unknowns.

My faithful Father finds me in those moments. He leads me to a new place, mostly unfamiliar. A place of rest and trust.

We are doing a Beth Moore women's Bible study at church and my heart is deep in search of Him! I'm so thankful for the Lord's ways of guiding me back to His word.

Isaiah 30:15

"This is what the Sovereign Lord, the Holy One of Israel, says: 'In repentance and rest is your salvation, in quietness and trust is your strength'..."

Instead of striving to fix Abby's problems and struggles (which include my own), many of which no one sees but me and my heavenly Father, I'm learning to find rest in Him. It brings a season of trust in His love for her-- and for me.

Isaiah 30:18

"Yet the Lord longs to be gracious to you; He rises to show compassion. For the Lord is a God of justice. Blessed are all who wait for Him!"

Waiting... not my strong-suit. Learning to be quiet before Him... also not my first choice. Trust... definitely something He is working on, in me.

With Abby's 14th surgery looming ahead, I'm both anxious and full of peace-- if that's really possible. Anxious knowing the risks involved, desperate for a sure solution to her discomfort. At peace because we have given her over to the Lord countless times before. Regardless of the outcome, and this is hard to say, He is faithful to her. He is faithful to me.

My prayer for this year has been to have new eyes to see what my heavenly Father sees. Eyes to see beyond what I'm looking at today. I want to gain His vision. I recognize how shortsighted I am-- blind really.

19 months

2011-03-09T14:24:00.000-06:00

(no hair cut yet)

Our littlest munchkin just keep growing and changing every day. He is really trying to talk more these days and makes a solid effort to repeat us. Most of the time his words sound about the same, but some are becoming clearer. He still signs and loves to watch our happy response to his attempts at communication!

New words: bread, no, Grandma "Gem," Papa, shoes, socks, book, ouch and oh no. He loves to announce that he is stuck, which happens frequently thanks to his adventurous spirit. He gets stuck on counters, stuck climbing Abby's potty chair, stuck in his high chair (which he can climb into and out of now), stuck under chairs and stuck upside down.

(singing and playing the piano)

He makes us laugh so much! What a joy to have this little munchkin with us, shining joy into some rather dark and sad days. This past weekend we spent time with Papa and Grandma. It was so good to see Papa smile and play with Levi. They are buddies.

Levi also likes to tell me that he needs a Dye dye (diaper), as he pats his pants in the front. Then he walks funny to demonstrate that he's uncomfortable. When I ask him if he needs a diaper change he vigorously shakes his head NO and runs away! So funny!

And no, we are not potty training yet!! (can you tell I'm dragging my feet)

On the mend

2011-02-23T14:58:00.000-06:00

Things are a looking up around here! Although we are still going through about a box of tissues a day, the fevers are gone and we've spent some time outside this week. So much has happened over the past several weeks it's hard to keep up with my own thoughts, much less get them down in writing.

Abby got a special baby-doll from Grandma and Papa for Christmas and it came in the mail last week. She is designed to look just like Abby; feeding tube, scars and all. She even has little hearing aids and can suck her thumb. She is lovingly made by Karen's Kids. She is called a "special angel doll".

Abby seems to like feeling her hair. It's fun having a look-a-like doll for our little sweetie! I'll try to take some pics of her G-button and scar to share.

Last week as Papa was having his big surgery, Patrick and I took a walk down memory lane to the hospital where Abby spent the first 6 months of her life. Papa was actually in the same hospital that Abby was born in. It was strange being back there again... the familiar sights and smells took us back to that day.

East TN Children's is right across the street. We walked down all the same hall ways we spent so much time in, 7 years ago. Some things have changed, but over all it felt the same. It's strange how a physical place can hold so many heavy emotions... you can actually feel the weight of it. But being there is somehow comforting too.

We spent some time on the 5th floor (NICU) lost in our memories, until we saw a family mourning in the hall way. Too much sadness. We quickly left with familiar heavy hearts to give them privacy.

I remember taking Abby to that window (above), once she was big enough, to show her off to family in the hallway.

NICU Entrance (below)

Lots of family and friends showed up to support Papa and Grandma that day!

Although it was a heavy day of waiting, Josiah loved having special time with Aunt Connie and Uncle Matt.

This past weekend we enjoyed a visit from Bill and Maddie! We had a great time together and Josiah especially loved having his cousin here to play with. They got to visit the aquarium, the space museum and go for a short hike on our property. (Thanks for flying out here to hang with us!)

We made special "flaming" strawberry cupcakes! They were so yummy.

Scratch that...

2011-02-18T15:47:00.000-06:00

Date.

RSV has hit our house and Abby is really sick. Today we had to cancel her surgery. Anesthesia won't consider her ready for surgery until 4 weeks out. Major Bummer!!

Our poor little girl is just miserble. Praying that she won't need a trip to the hospital. Last time she had RSV she ended up in ICU on a vent, after a very long seizure!

We are starting antibiotics today for a likely 2ndary infection (sinus infection, pneumonia).

Although this feels like a big setback we know that our Heavenly Father knows all about Abby and her needs! His timing is best.

It's a date

2011-02-11T14:30:00.000-06:00

Abby's Nissen Fundoplication surgery is scheduled for Monday, Feb. 21.

Mini-One

2011-02-07T16:15:00.000-06:00

This past month has been full of changes and waiting.

Abby had yet another feeding tube placed last week. This one will stay. It is a non-balloon, low profile G-button for those interested. It's called a Mini-One. So far we like it! And contrary to our predictions, Abby seems to be more comfortable with it. That is the best part of all the changes.

We got a call last Thursday from her GI doc's office reporting that all the kinks had been worked out and the surgeon has agreed to perform the repeat Nissen Fundoplication without any further testing. This was great news! (He was present during her procedure last month and saw her esophagus and state of the previous Fundo done 7 yrs ago)

Now we are waiting for a call from the surgeon's office for a surgery date.

During all these changes Abby has lost a few pounds. Her doc wants to change her back to Pediasure for her nutrition instead of the special (expensive) formula she's been on for Jejunal feeds. We are really hoping this change in formula will help her digestive system function more normally and eliminate some of the problems she's experienced while on the Peptamin. Before the J-feeds began 4 yrs ago she rarely had bowel trouble and we could effectively manage things easily by adding water to her feeds. This has been a big source of trouble for us lately!

Looking forward to new days of comfort ahead for Abby and time to spend on other things like growing and playing!

Another major change for our entire family hit this month for our sweet Papa. Last week he was diagnosed with cancer. We are praying for his health, healing, strength and comfort! We love you Papa!

Meant To Be

2011-01-16T22:42:00.000-06:00

We've decided this will be Abby's Birthday song this year.

Steven Curtis Chapman

from Veggie Tales- It's a Meaningful Life!

Long Before You Drew Your First Breath
A Dream Was Coming True

God Wanted to Give A Gift To The World
So He Wrapped It Up In You

Every Step That You’ve Taken
Every Move That You Make
Is Part Of His Plan

You Were Meant To Be Touching
The Lives That You Touch

And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring
And Singing The Songs
You’ve Been Given To Sing

You Are Perfectly, Wonderfully,
Beautifully Meant To Be
You Were Meant To Be

Long Before You Took Your First Fall
You stumbled to the ground
God started telling the story of you to the angles around
Every failure and victory
Everything in between
Its all in his hand

You Were Meant To Be Touching
The Lives That You Touch
And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring

And Singing The Songs
You’ve Been Given To Sing

Days 6 and 7

2011-01-16T22:15:00.000-06:00

It's been a rough weekend for Abby. Just more of the same discomfort, coupled with a few changes.

Saturday I had her in the bath *carefully* changing her dressings. As I struggled with a stubborn piece of tape, out popped her feeding tube! Now, normally it's not a huge deal to change a simple G-tube (not GJ-tube). But being that this one was placed for a purpose by her doctor I was really trying to keep it in till her appointment. And being that I have somewhat of a pride issue, I really wanted to show up to our appointment with it still intact... just to show him that we could do it.

To my surprise I was able to maneuver it back into her stomach. And it worked! At least until this morning. Abby had several seizures during church and after about the 5th one I looked down and saw that her pants and shirt were soaked in formula/medications. yuck. I knew it had popped out again during one of her seizures.

We gave up on that crazy tube and put in a new Mic-key button. There's nothing like an obnoxious change to make you appreciate what you had! I actually missed that G-button. It's so much easier to use than the 12+ inch, tape laden contraption she had this past week.

The purpose is the same- feeding into her stomach. And we now know it doesn't matter what type of tube it is, she is just as miserable with both.

It's 10 pm and she is finally settled into bed and comfortably asleep, after 12 seizures and hours of agitation.

Days 4 and 5

2011-01-14T14:09:00.000-06:00

Made snow cream. yumm. The boys and mommy loved it!

Got Abby's follow up appointment with the GI doctor for Jan 19th, next Wednesday. Continuing with the hourly bolus feedings. 2 oz has been our max at one time. As expected Abby just isn't a happy camper during and after feeds. As long as we aren't feeding her she seems pretty happy.

I know I've said it before but, I HATE REFLUX!!!!

We are trying to teach Josiah not to use the 'hate' word unless it's really necessary. Today in my world, it fits.

I just want her to enjoy being fed. To enjoy tasting food and swallowing again. I think at this point she would rather be hungry.

Waiting on a call back from the doctor's office for further feeding instructions.

Last night we enjoyed a lovely dinner with friends and an extra special treat: a winter four wheeler ride through the snowy, moonlit woods! It was like breathing fresh air for the first time in days.

Thanks friends!

Day 3

2011-01-12T16:34:00.000-06:00

SNOW DAY!

We finally got to enjoy it together.

Ice Castles

Sledding!!

Getting cold and cranky!

Day 2

2011-01-12T16:27:00.000-06:00

Made a snowman cake

Little hands helped

Little person found the blue food coloring! Ahhhh!

blue carpet..

blue shirt...

blue hands...

Long bath!

Gave medicine at 8 am, 9 am, 10:30 am, 1 pm, 2 pm, 5 pm, 8 pm, 9:30 pm.

Gave 1 oz bolus feeds every hour.

Held Abby most of the day to keep her from biting.

Oh yea, and changed lots of diapers as usual.

Day 1

2011-01-12T16:14:00.000-06:00

Most of Alabama were snuggled inside when the snow came... we were driving in it!

View from the pre-op room.

A little friend sent with Abby by Josiah

Stats

view from her room

trying to sooth a sore throat with some candy

Early discharge

2011-01-10T18:23:00.000-06:00

Abby has not had any seizures today! Thank you for all the prayers.

We were given the option to go home tonight if we thought we could make it. After checking the roads we decided to take the opportunity to hug the boys!

Sent from my iPod

Snowed in- RM 778

2011-01-10T15:23:00.000-06:00

Abby is out of recovery and in a room at Children's. The procedure went well and we had a good long chat with her doctor. (he is so wonderful!) He and the surgeon took a good look inside and gathered more information to help us make decisions for Abby. Her previously done Fundopliction is no longer working and has become "loose" and "floppy." They found significant esophagitis. The pictures they showed us looked worse than previous scopes (in my non-GI professional, mommy opinion).

Her G-tube balloon wasn't as close to her pylorus as he had expected. This meant they didn't have to move her G-tube site! They did change her tube to a crazy looking contraption. The part on the inside of her stomach is very low profile and will hopefully interfere less with her pylorus functions. The outside part is a cumbersome mess of tape and tubing that can easily be yanked out! Even he apologized for it.

The plan is to use this wonkus tube for a 2 week trial period where we will attempt bolus G-tube feedings. (no tummy time) If she starts having a lot of vomiting during this time we will consider placement of a permanent "true" Jejunal tube, with no gastric access. (This would be a bummer for many reasons I won't go into right now)

Her reflux esophagitis needs to be fixed. He placed her on a third reflux medication in hopes that it will help her discomfort.

BEST CASE scenario: She tolerates bolus feeds again, doesn't vomit and isn't terribly uncomfortable thanks to the increase in meds. After the 2 week trial we change to a low profile G-button (yippee) and continue with life.

WORST CASE: She absolutely can't tolerate G-feeds and goes back to surgery. They would place a true Jejunal tube (bye bye normal feedings) and perform a redo Nissen Fundoplication.

EXPECTED CASE: She tolerates the feeds to a point, continues with the same discomfort she's dealt with for years, which looks like: finger biting, hair pulling, moaning and yelling until all hours of the night. We go back for biopsy results in 2 weeks and discuss doing the Fundoplication.

With what we expect to happen, she might be able to return to normal bolus (not a continuous drip) feedings without the horrible reflux.

We prayed for the truth of her discomfort to be discovered and a good plan to develop from the new information. The Lord is faithful and has accomplished that today! The next several weeks will probably be hard on Abby but we are narrowing down the options.

The fun part of this ordeal is that we got to drive in the snow last night! Generous friends let us crash at their home last night, only 10 minutes from the hospital (in the snow). Thanks Micah and Julianne! This morning was a winter wonderland with white roads and icicles! The boys are home having a blast with Papa and Grandma enjoying the rare treat. We miss them.

Abby will stay here overnight and hopefully we can safely drive home tomorrow and play in the snow!

(our backyard!)

Procedure Scheduled

2011-01-06T16:46:00.000-06:00

Abby will be having her GI procedure Monday morning. Her GI doctor along with a pediatric surgeon will be there to make decisions about her care.

They will start by doing an EGD (upper GI endoscopy). She will be under anesthesia during the procedure so they can perform any surgery that might be needed. The GI doctor spoke with us over the holidays to propose several different surgical options. We won't know for sure what will be done until they get in her stomach and take a look around. I'm most interested to know what her esophagus looks like as she has had esophagitis and gastritis in the past.

Her G-tube will likely be moved to a better position, away from her pylorus. He mentioned placing a different kind of G-tube (low profile) also.

We are anxious to get this procedure done, hoping it will bring more comfort to our girl.

Behind the scenes things have been rough for Abby. The magic juice (Carafate) has lost some of it's magic effect over these past several weeks, and her discomfort has been difficult to manage at times. There have been some days that it seems we are just living for the next dose of medicine, doing everything in our power to make her comfortable.

We've had to completely stop giving her meds through the G-port (stomach). In the past we were fearful of giving her meds through the J-port (intestine) b/c it has become clogged. If this port clogs we can't feed her and it's practically impossible to fix without totally replacing the tube... which is another outpatient procedure at the hospital! These past few weeks we've resorted to putting meds through this J-port b/c she totally comes unglued if we use the G-port (stomach). (I'm sure this is clear as mud; I know it doesn't make much sense unless you are used to using G-tubes)

On Monday we will be at the hospital at 6 am.

One concern we have is with the anesthesia. The past 4 times Abby has been sedated for various procedures/surgeries she has a dramatic increase in seizures afterward. In April after she had the shunt revision she ended up going into status (prolonged seizure) the next day, which sent us back to the hospital. Her VNS (vagus nerve stimulator) will have to be turned off during the procedure which also puts her at higher risk for problems.

Thank you to everyone who has prayed and continue to pray for Abby. The Lord has been so faithful in every detail of this ordeal; from the wonderful doctor, to his nurses, to the hospital staff and their scheduling this procedure so quickly. Our family who are willing to give of their time (and energy) to stay with the boys. Somehow even with all the blessings I still find it difficult to trust that all will go well Monday and her problem will be fixed.

"We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."
C.S. Lewis

I pray this verse over Abby:

"that he who began a good work in you will carry it on to completion until the day of Christ Jesus."

Philippians 1:6

10th Anniversary

2011-01-01T14:03:00.002-06:00

(warning: long slide show!)

10th Anniv from patty hull on Vimeo.

Thursday we celebrated 10 years together! I have 10 unique bouquets of flowers around my house (from my sweet husband) to remind me of all our blessings.

We spent the day reminiscing about these past years. How can you sum up this amount of time in one post? You can't.

A few land marks include living in 8 different places, 3 cities and 2 states, earning 3 degrees, having 3 children, Abby's 13 surgeries, 220+ nights in a hospital, numerous ER visits; owning: 4 vehicles, 4 motorcycles, 3 jetskis, 3 houses, 1 farm, loving 1 dog, traveling to over 19 states, camping a few times and learning deeply about this life.

The learning about life bit is where we find ourselves dwelling on the memories. We've learned to cry together, hear bad news, wait, move, allow dreams to die, embrace new ones, rejoice together, work, read, make friends, build a home and rest together. Most importantly we are still learning to pray together and trust that our heavenly Father is able to carry our burdens, wipe away our tears, provide for our needs and comfort us. He is walking this road with us.

So many memories in what seems like a very short time.

This special day reminded us how thankful we are for the gift of a committed, loving and giving spouse! And today as we start a brand new year, it's fun to imagine what new memories we will make together, as a family.

Merry Christmas!

2010-12-20T11:21:00.000-06:00

Gastric Emptying

2010-12-17T17:37:00.000-06:00

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

2010-12-08T08:21:00.001-06:00

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

2010-11-30T15:07:00.000-06:00

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

2010-11-28T23:12:00.001-06:00

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

2010-11-28T22:41:00.000-06:00

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!

2010-11-21T16:12:00.001-06:00

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

2010-11-21T16:10:00.001-06:00

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

2010-11-05T17:23:00.000-05:00

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)

Vacation 2010

2010-11-04T16:31:00.000-05:00

Photo memories coming soon...

He's Walking!

2010-10-22T09:32:00.000-05:00

Untitled from patty hull on Vimeo.

Kick It!

2010-10-15T15:22:00.000-05:00

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

2010-09-30T16:06:00.000-05:00

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!!

HAPPY BIRTHDAY PATTY!

2010-09-23T10:12:00.007-05:00

Last week, Patty and I had a picnic at our farm

Fresh Market treats, (this cost more than dinner!) ps. Thanks Bill for the knife

I have found a good thing!

Dear Patty,

I appreciate you. Your compassion for children, tenderness with Abby and roughhousing with the boys are all traits that make you a mommy/wife of great worth. Thanks for believing in and "helping" me through our journey of following Christ, marriage, parenting, and chasing dreams. You are my dearest friend and favorite person to be with. May the Lord bless you and fill you with Himself today.

Love,

your husband

A new chair and a race

2010-09-22T21:03:00.000-05:00

Abby's new wheel chair arrived on her birthday! We were so thrilled. She looks great in it and will be able to grow 4 times her current weight and still fit. The frame is hot pink and her name is embroidered on the seat in the same color. She is fully supported and able to sit properly for maximum use of her hands.

Children with CP need firm support so they feel safe and secure enough to reach out and use their hands to explore their environment. If they feel insecure and begin using all of their energy to maintain a sitting position, they have nothing left to control their hands. Add vision and hearing impairment to the mix and the need to feel secure is even more critical. In Abby's case, she really struggles to maintain head control as well, so she needs the upper body support to keep her head up and for use of her hands. The chair comes with a tray which I love! It helps keep her hands close to midline and we can put toys for her to feel while she is sitting for long periods of time.

The only bummer... an extra 40 lbs! The chair is fairly heavy and awkward to lift, I am not able to do it easily. Getting the chair into our van has become a major challenge. But my savvy and intelligent husband has solved the problem and is (as I type) working to install a mechanical lift in the rear of our minivan. The lift will (hopefully) grab the chair and do all the work of hoisting it into the air... all I have to do is guide it into place. This solution should work for several more years, until we either need a better one due to Abby's growing size, or until we get a different vehicle.

A few weekends ago Patrick took part in a triathlon (Frantic Frog) with some friends. It's become a yearly tradition to raise funds and awareness for adoption. Lots of folks from church came out to race or cheer, all wearing the "I love adoption" t-shirts made for this years' event.

He was on a team of three, and did the swimming part! (one ran and one biked) He did great and came in 14th out of over 600 people. Whoo hoo! His team ranked 3rd in the mixed relay group. We were all very proud of Daddy!

Josiah is ready to race now. He wants us to draw numbers on him almost daily to prepare for his 'race'... just like Dad.

Abby turns 7!

2010-09-03T15:04:00.001-05:00

Untitled from patty hull on Vimeo.

Dear Abby,

You are 7 years old today! Looking through all of the pictures of this last year reminded us what a full and heavy one it's been for you.

When you turned 6 last year you were just starting to get used to a new brother! A new school and therapy schedule kept you very busy during the week, but your teachers have all grown to love your sweet spirit.

As your mom and dad, we are always looking for ways to help you learn and to become more independent. So we took you all the way to Boston to meet some new teachers who spent time with you and helped us understand your special learning needs better. They came to love you too, of course! You seemed to enjoy being in the preschool class with a personal teacher while she signed the songs with your little hands. You looked like such a big girl!

We made some fun memories with family too! You've really grown to love the water. First in Florida and then this summer at the pool. We all love watching you in your new neck ring, floating and completely on your own. It's neat to see you upright in the water and you seem to enjoy this too.

Your brothers have gotten to know you better this year. Josiah talks to you sometimes and introduces you to strangers in public. We can tell he is proud of you! Occasionally he asks us questions about why some things are difficult for you. He is becoming a compassionate and sensitive boy because he loves you.

Levi smiles when he sees you in the morning. He likes to try to crawl into your lap when you are in your bumbo seat. Your hearing aids are always interesting to him and so is your feeding tube! Some day he will be your strong protector.

You had a hard time this year with seizures and sickness. We spent a lot of time in prayer for you and finally got an answer when we saw your neurosurgeon. You were very sick. But, in typical Abby fashion, you fought to stay with us and recovered from your surgery and big seizure. It's taken a while for you to gain back your strength. This summer has been great spending time together and seeing you feel so much better!

We are so proud of you sweetheart and love you more than words can describe! Many scripture verses have come to mind this past week as we think about your precious life.

2 Corinthians 4:16-18

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

We are so thankful to have a heavenly Father who daily carries our burdens and who will one day reveal His purposes.

"The eternal God is your refuge,
And underneath are the everlasting arms."

Deuteronomy 33:27

Happy Birthday Abby!

Love,
Mommy, Daddy, Josiah and Levi

First Grade

2010-08-24T15:46:00.001-05:00

The new school year has begun and at our house that means daily visits from therapists and teachers. Her school 'team' met with me 2 weeks ago to talk about her IEP goals and to share ideas of how best to position her for certain tasks, what she has improved on over the summer months and how to implement new signs. After it was over it suddenly hit me that a new year was starting, but more than that... Abby is now in the First Grade!

I don't know whether to smile or cry. Should I be excited? It's easier to just think we are starting another year of home bound services and not put a label on what it really means. We aren't buying new crayons or new school shoes. We aren't reading 'Hop on Pop' hoping she will sound out the words.

Instead we are working on head control and upper body strength that was lost after her April surgery. We are still trying to encourage her to swallow, and take steps in her walker. To use her vision to reach for objects put in front of her eyes. To focus on a task without biting her fingers.

Most days I try not to think about our routine in these terms, but to settle my mind on tiny improvements made and smile about those. And to remember that God's ways are not my ways and His plan for Abby is much higher than what I could imagine.

There is something funny about the beginning and ending of things... somehow it makes you reflect and brings into focus how things really are. This might not make much sense, but it is where I am today. I guess at this point it's easier to ignore what other kids are doing in first grade.

So far her schedule is manageable which I am thankful for. To give a brief idea of what the weeks look like:

Monday- speech + feeding therapies
Tuesday- vision teacher
Wednesday- physical therapy
Thursday- teacher for the hearing impaired + Occupational therapy
Friday- physical therapy at UCP

I am very thankful for a wonderful team of teachers and therapists who genuinely want to see Abby succeed and meet her goals! They love her too, which makes me happy.

On other notes, Abby is doing very well. Her seizures are much better controlled and we haven't been to the ER in over 3 months! Now that some of the school germs are coming into our house I'm trying to be more vigilant about hand washing/sanitizing and trying to keep her sickness-free... as much as possible.

We are waiting to hear news of her new wheel chair arriving! She was measured for it and it was probably ordered back in June, so we hope to see it within the next 2 months. Medicaid takes their time approving things like this!

Abby still seems to be tolerating the G-tube feedings and also some occasional bolus feeds. Most of the day and night she still gets the continuous, slow drip. This is very encouraging although we don't know for sure that she isn't refluxing. We are really hoping to not have to return to the GJ!

The G-tube is great although it is still having problems. In the past we typically changed a G-button every 4 months or so. These days we have been changing anywhere from 7 days to 3 weeks. The balloon on the inside of her stomach keeps popping. We don't know why but suspect it is stomach acid weakening the material, causing it to pop. So far insurance hasn't denied sending us replacements! This is good b/c they aren't supposed to pay for more than one ever 3 months.

This post has gotten much too long, so I'll stop here. Next up - our girl will be celebrating another birthday next week!!

Summer fun @ the Pool!

2010-08-13T13:08:00.000-05:00

One of our favorite things to do as a family in the summer is swimming! Josiah's skills in the water have developed more this summer, although he still needs to learn to take a breath. He is able to swim half way across the pool now. We are hoping he can join the kids' swim team next summer!

Abby really loves the water too. She has a small floaty that goes around her neck to keep her head above the water. She can be completely independent with this on. We can push her legs down in order for her to be upright, which I think she really likes. She has even learned to float on her back without her neck ring and without us touching her!! Occasionally her face goes under water but she recovers nicely, apparently unfazed by it.

Levi is going under water readily and mostly comes up smiling. He loves to splash and kick his little legs. I've even noticed him purposely putting his face in the water to try to blow bubbles. He thinks this is hilarious!

It's hard to get video at the pools since our arms are usually full!! We'll try to capture Abby and Levi in the water to share soon.

Counting Stars

2010-07-28T16:08:00.004-05:00

We just got back from an incredible weekend! Friday night we had the pleasure of attending an Andrew Peterson concert in our home town, Oak Ridge Tennessee!! Whoohoo! He is one of our favorite music artists so we were really looking forward to this event. My cousin Emily is adopting a child from Ethiopia and had this brilliant idea of asking AP to do a concert to help raise money!

He sang several songs from his newest album, Counting Stars, which is wonderful! My brother in law (Lee) got to sing Matthew's Begats on stage with him which thrilled Josiah! (This is one of his favorite songs) Ben Shive sang a song requested (4th of July) by my 6 yr old niece, Anna, which was really special.

Josiah got to visit with AP for a few minutes after the show! This was so fun to watch. He told AP all about Levi and the words he knows and a little about Abby. So sweet. After hearing that Abby is the big sister Andrew asked J if she takes care of him. Josiah thought for a second and said, "no, I take of her." He laughed and said that was great. Little did he know how true it is.

AP, Ben Shive and Andy Gullahorn talking about "Counting Stars"...

My Sis and I got to hang out alone together Saturday after a fun day at a water playground! A perfect solution to a scorching hot day.

A bitter sweet portion of our time together was spent at a celebration of life service for a long time family friend who passed away last week. It was amazing getting to hear about all the lives he touched and the way he reflected Jesus until his last moments. I just hurt for the family that is left behind, although they showed such hope in the midst of their sadness.

Sunday Abby got sick with a fever and proceeded to have 12 seizures that day. Our plans for camping were put on hold as we tried to get her stable with meds throughout most of the day. The Diastat was out and ready to be used, but thankfully we didn't have to make a hospital trip this time. Monday was spent resting and trying to get Abby feeling better. That night we got to have supper with Matt and Connie at Big Ed's (our favorite O.R. pizza!) to catch up after their trip to Europe!

Tuesday we spent the day on the lake!! Such fun. We went out on Papa and Grandma's boat, swam a little bit, soaked in the sun, ate at a neat little restaurant and fished. Levi wasn't a happy camper most of the time, but took a short nap while we cruised. J and A enjoyed the water!

Now we are home and Abby still isn't feeling great. She has a low grade fever and has had a seizure today, so we are just chilling at home. There is enough laundry and cleaning to do to keep us busy for several days!

Season of Calm

2010-07-22T16:30:00.000-05:00

These past several weeks life has seemed pretty "normal." I'm appreciating the lull in all things exciting and stressful. Summer school for Abby has been a bit lower key and our schedule has allowed time for other things, which has been nice.

Updates on Abby...

Eyes- she had her yearly retinal exam last week and pressure check. The doctor was encouraged that she is showing more visual interest in her world. Her right retina is completely attached still and has potential for vision. I even got an ultrasound picture of her retina... something that holds a lot of emotion for me and Patrick. Her pressure was 23 which is stable. He changed her two drops twice a day to a combo medication that is only one drop twice a day. Nice!

GI- We are still feeding Abby through the 'temporary' G-button. She seems to be tolerating her continuous drip, and we have slowly started introducing small bolus feeds... just to see how she will do. Today at hearing clinic she weighed 34 lbs, up 2 lbs from a previous check. Our dietician still wants her to weigh more and showed me that she is well below the growth curve. To get her to 3rd %ile she needs to weigh 40 lbs. We will start giving her a higher calorie formula soon.

Ears- Both looked good today. Her left hearing aid is acting up so it has been sent for repairs. Testing in the booth showed responses b/w 50-80 db without her aids! This is considered moderate. But we still don't know how clear speech is with or without her aids.

We are looking into the possibility of a future wheel chair accessible vehicle. Right now we are just gathering information, prices etc about this option to make the best choice some time in the near future for our next family vehicle. The bigger and heavier she gets the more pitiful my back feels. Thinking of the possibility of being able to wheel her in and out of the van sounds pretty nice!

13 months

2010-07-21T12:05:00.000-05:00

Our littlest munchkin is 13 months old! He is 20 lbs 14 oz and very active. Table foods are preferred over baby food now, which in some ways is easier. I just loved making his food so much, I miss knowing he is getting great nutrition. These days he eats what he eats, and it's not always the healthiest. Veggies are hard for him to chew with his 8 front teeth so he tends to go for the breads and crackers.

He is still cruising and walking with our help, but has no problem jetting up our stairs... very quietly I might add. When he is caught he giggles and tries to climb even faster! so funny

The nightly wrestling matches with Daddy have become more interesting to him. He joins in at will but often retreats quickly after. He likes to make sure Mommy is nearby for comforting as needed. I love it!

Screaming has become his communication method of choice. Although he knows a few key signs he pretends he can't, or simply chooses to scream instead. We're working on it. He is babbling more and making some really cute sounds. He loves to 'talk' to Josiah, watching his brother very closely for an example.

One of his favorite words is 'Abby'! It sounds more like 'Abm'. It's about the most precious sound I can imagine. He says it so lovingly too.

I just love kissing those soft little curls on his head!

Oh, and he is giving kisses now too! sweet wet ones!

Gone Pick'n

2010-07-21T11:26:00.000-05:00

This summer we've enjoyed spending time on our property picking some blackberries! Patrick's favorite dessert is blackberry cobbler, so we've made a few.

Josiah is learning the technique of picking... avoiding the stickers and all! There have been a few tears.

Guess Who...

2010-07-10T23:18:00.001-05:00

Jumped off this...

today!

(Wishing we had our camera while watching our 4 yr old Josiah jump off the high dive without hesitation and swim to the side all by himself!)

Prenatal Models

2010-07-07T14:52:00.000-05:00

What would it be like to actually hold a model of your unborn baby?

Instead of just seeing an ultrasound image or even a 3D or 4D experience, you can touch an accurately sized replica of him or her. After having a micro preemie we know first hand what a 23, 28, 32 and 34 week old baby looks like. But for those who long for an extra measure of bonding during pregnancy this clip might hold an important development for just that.

The bigger interest for me is the possible uses of this technology to promote LIFE for the unborn to those who don't understand fetal development. Who can hold a life size model of a 10 week old fetus and deny his/her humanity and unique form.

Could this be the future of prenatal experience?

(pause the blog tunes @ the bottom of the page)

Special visitors

2010-07-05T18:15:00.000-05:00

The boys are off at the pool and as I sit with Abby who has a little fever I thought I should update a bit.

We've had a wonderful week of visitors! First my mom and dad came for a short but sweet time together before they head back to China. After some good talks, good food and fun just being together we said good-bye for another stretch of separation.

This past weekend Papa and Grandma were here and the kids enjoyed more grandparent love! We all headed to the botanical garden and later celebrated Papa's birthday on Saturday. Patrick and I got up early to sneak out for a quiet breakfast together yesterday morning, thanks to grandparents! This might become a new tradition... "date breakfast"! If only I were more of a morning person.

There is another new visitor that arrived at our door step Friday, although not a temporary one. Our last appointment with Abby's neurologist we discussed her seizure patterns and complications associated with the status (prolonged) seizures that she is prone to. The doctor has ordered home oxygen for an extra measure of support during times of cluster seizures or illness that usually leads to the long, stressful seizures. So now we have a concentrator, 2 O2 tanks and one portable tank at our house.

Happy 1st Birthday Levi!

2010-06-17T13:56:00.006-05:00

Dear Levi,

What a wonderful first year we have spent with you. Today we remember 1 year ago when we first met you face to face and how in love we were! Now you are one year old and have such a precious personality. You like to be held and to cuddle, you are a very fast crawler, you think biting is funny, you don't like green beans or squash, you adore your big brother and have started saying Abby's name. You amaze us with your ability to learn and to love. We are so happy you are in our family and you bring a fresh delight each day.

We are so proud of you and we pray that you will grow to be a young man who loves our Lord and who loves to learn His Word and who follows in His footsteps no matter what! You are a special boy.

We love you Levi! Happy Birthday son...

Levi Turns one! from patty hull on Vimeo.

On his own...

2010-06-08T15:27:00.014-05:00

Our second small munchkin has spent the past few days in TN with Grandma and Papa... all on his own! We met them halfway on Sunday where we handed him over for a uniquely special time alone with them. He has been anticipating this trip with great excitement and by the sound of his little voice over the phone he is enjoying every moment!

I am however missing him...

The house is very quiet and although I have one less child to feed, bathe, play with and potty I have not accomplished the things I thought I might while he is away. Oh well.

(Receiving his gymnastics medal)

We head up to meet him tomorrow and spend the weekend with our wonderful family. It will be a welcome break.

Abby has had a good seizure free week! Aside from some very fussy (and late I might add) nights she is making some slow progress.

Our appointment with neurology went well last week and it has been decided that we will get oxygen and a pulse ox monitor in our home. It will be used as needed for days or weekends like we've had in the past 6 weeks where she could benefit from a little extra help. Or should I say that I would benefit from a little extra information and peace of mind. Either way we should be getting them in the next few weeks.

Levi's first Birthday has snuck up on us and we will be celebrating a little early while in TN this week! The thought brings mixed emotions. We are so excited and amazed that our smallest munchkin has already reached this milestone, but a little saddened at the passing of time. He is such a delight and showing more and more personality and spunk with each day.

We are still so in love!

Recent visit to the Botanical Gardens:

Clusters

2010-05-23T13:19:00.010-05:00

I wrote a long post explaining the events from this past weekend and then promptly lost it! Argh. Here goes again:

Sometimes when Abby has a fever she will experience something called "seizure clusters," it's when she has seizures one right after another with very little break in between.

This happened over the weekend after a fun filled Saturday with Aunt Connie and Uncle Matt. It came on suddenly and she quickly looked like she was headed for a status seizure. We gave her the Diastat and things settled down for the night. She slept well.

The next morning the seizures started back up again, so we called our neurologist who gave us instructions to give extra medication, alternate Motrin and Tylenol and take her to the hospital if it continued. We could not give more Diastat unless we were en-route to the hospital. (too much of this drug can suppress her drive to breathe).

Sunday was spent giving meds, watching her seize and praying we wouldn't have to go to the ER again. This continued through the night and Monday was spent resting and recovering from the weekend.

We are all exhausted; physically and emotionally.

The Lord has been teaching me several things over the course of this past year. One of them is to really live one day, sometimes one moment, at a time. The words "grace," "peace" and "surrender" have taken on new meaning as well. He has been speaking to me through His word, through other books I'm reading, through loving family and close friends that care.

We are taking to heart that our true hope won't be found here in this life. Our hope is found in the Lord. He is sovereign and promises to work this all out for good and for His glory. I'm reminded daily how shallow my vision is and how large my need for His strength has become.

So much in this life is out of our hands, but are safely in His.

On the lighter side, Abby is now on her 3rd g-tube button this month. They are supposed to last 3+ months and have in the past. We are juggling with the insurance people, her gastroenterologist and supply company to come up with a solution to this problem. The balloon inside her stomach holding the button in place keeps popping, causing the button to literally fall out. (could be caused by excess stomach acid, a product defect or possibly the medications she gets through it)

We may be compelled to revert back to a BARD button (instead of the Mic-key) in order to prevent a number of problems, the least of these being insurance coverage. She started out with a BARD in 2004 so we are very familiar... it doesn't have some of the features we like about the Mic-key. Not sure if BARD makes a GJ tube yet.

Visual of a Mic-key button:

(new button- deflated balloon)

(testing the balloon before placement)

We shall see.

For now we are enjoying a mostly normal Tuesday.

11 Months

2010-05-21T14:44:00.010-05:00

Our little cruiser has become our little climber in the past few weeks. Good bye floor, Hello stairs! Levi is now racing upstairs like he's on a mission... but in 11 month old fashion. So we have to keep the toy room doors closed or the gate put up to keep him from escaping.

He only has 4 teeth but has really broadened his meal time options. Snacks can include bread, cheerios, bananas cut up, cooked peas, hard boiled eggs, tiny bits of chicken or apple and his favorite... graham crackers! It's so fun to feed him, and so effortless. He's practically a bottomless pit!

He is saying "Ma ma" more consistently now and also signing "eat" and "more" as before. Diaper changes have become more challenging and he really prefers to be naked!

This is such a fun and interactive stage, and Levi continues to amaze us with his many skills!! Today he enjoyed pushing a ball back and forth. His favorite thing is to follow Josiah to his bed room and play with what ever he is playing with: cooking utensils, magnet tiles or pirate ship stuff. For the most part J is happy to share, but now that L is more independent playtime can be more like destruction time.

(taken just after the first, but before the 2nd was pulled)

Abby's wiggly loose bottom teeth finally came out last weekend! I don't think she was too thrilled with the process but it has to feel better now that they are out.

When Abby was in the NICU we received a sweet gift from Patrick's Aunt Mary Lou. It was a soft pink bunny with her name embroidered on one of his ears. The bunny has on pajama's and sports a small pocket on it's hiney. When I first noticed the pocket I wasn't sure what it was for. Aunt Mary Lou told us it was for the tooth fairy! At the time it was hard to imagine the joy of loose teeth, we didn't know if we would ever get to that point.

To celebrate Abby's first lost teeth (except for the one knocked out 3 yrs ago during an intubation... that one didn't count) we put her pink bunny to work. In the morning Josiah was very excited to find two lollipops in place of the teeth. He brought the bunny (and candy) to us early the next morning, eager to share in Abby's reward.

Abby seems to be doing well this week. She has had 1 or 2 seizures so far which is great! Her incisions look sore and are still healing after 3 weeks. She has been such a trooper keeping up with therapies and her usual appointments. Next week is the last week of the school semester and we are all looking forward to a break.

During the summer she will benefit from 3 weeks of summer home-bound services including PT, OT and our teacher for the hearing impaired. This will be good for her since Abby has taken several steps backward due to illnesses and surgery.

Next month she will also get to go to camp! UCP is offering summer camps ("I Can Camp") for children with physical challenges and Autism. Abby will go from 9-12 am for 5 days. The kids will have fun playing with water, petting animals and other carnival themed activities, all the while working with therapists on their individual challenges. We hope she will have fun.