Tests, tests and more tests

Health issues with Abby seem to come in waves. The past few weeks have been full of tests and worries about various problems.

The increase in seizures still hasn't been answered, although Abby did have another CT scan done this week which revealed no changes since her last scan. This is wonderful news! We have been increasingly concerned about the combination of her new seizure activity and recent, unexplained irritability. After missing a neurosurgery clinic appointment due to a canceled flight from California (another long story), we were finally able to confirm that her shunt malfunction is not the culprit.

Reflux has always been one of our enemies, although we never realized how long and how seriously it would affect her life. Thursday our GI doc performed a Gastroscopy (upper GI endoscopy) on Abby to check for damage from the reflux. The test revealed significant esophagitis. We got a picture of it and you can tell it is red and inflamed.
Her stomach looked fine; no ulcers. His recommendation was to place a gj-tube. This would replace her button with one that has two ports: one for feeding into the stomach (g), and one for feeding into the jejunum (j). Abby would be connected to a feeding bag and pump for 12-18 hrs a day. It would deliver formula at a slow drip into the intestines, bypassing the stomach. This suggestion raises so many emotions for us, the main one being a huge step backward from normalcy.

Because we want what is ultimately best for Abby in the long run, we asked if we could try the blenderized diet to see if that might relieve some of her reflux. He agreed to give it a 4 week trial before moving forward with the gj-tube. We've started blending up regular food for her! It feels so good to be able to give her good nutrition instead of just formula. So far she is tolerating it well. One main advantage is that this diet is much thicker which will hopefully prevent her from refluxing.
We've spent the past month or so introducing Abby to one veggie or fruit at a time to make sure she didn't have any bad reactions.

Abby has another EEG scheduled for the end of this month. This one will be longer (24 hrs) and will hopefully pick up the seizure activity she has during the day and at night. We are hoping this will give us the information we need to make the best choice for further treatment. Our Neurologist is recommending the Vagus Nerve Stimulation Therapy. As I've mentioned in previous posts, this requires minor surgery and an implanted device.

We continue to pray for wisdom. It is very hard to know what to do sometimes.

ps. The picture is of the kids in their new bike trailer! It has been so much fun riding together around the neighborhood.

Dream Job

Today marks a very important day for our family! My husband Patrick starts his dream job.

Patrick and I first met the summer before I started college. We began dating and eventually got married while in college. It was fun supporting each other and struggling together through those years. Patrick decided to endure more of it than I could stand, so he continued through his masters and on to get his PhD. Yikes, there was a time when I thought he would be in school for a very long time!

I always knew his dream was to become an Engineer and eventually work as an astronaut. Our first step was to move to Huntsville so Patrick could pursue this mission by working for NASA doing his post-doc through a contractor. He continued working as a contractor after the post-doc position was completed, looking to one day become a NASA employee!

It has finally come true for him. He will now be wearing a Gold badge to work as he continues his project to develop part of the new Crew Launch Vehicle that will one day fly to space. Most of what Patrick does at work I don't understand, but I do know that today is a very special one and I'm so proud of him for sticking to his dream.

The Lord has been so good to us. He cares about our desires as well as meeting our needs.

Abby's EEG

Yesterday we took Abby to have an EEG (electroencephalogram) at our neurologist's office. They attached numerous, colorful wires to her head while I watched her brain waves dance across the screen. She was pretty calm considering how much she protested to the placing of the electrodes!

The EEG was ordered because we have been noticing Abby having new seizures, and also some increase in her typical seizures. From what we've read and researched her new seizures look like they are probably Myoclonic seizures. They look like she suddenly gets startled and throws her arms out to the side and seems disoriented for a moment. I can tell it is a seizure by the look in her little eyes.

Abby's typical seizures that we have been seeing since she was 11 months old are Tonic-Clonic seizures. They look more severe. Every time she has one of these it drains a little piece of me, as I watch my girl wilt into a drowsy state.

We also think she might be having Absence seizures. Her teachers have mentioned that they are seeing these as school.

Dr. M's nurse practitioner showed us an actual Vagus Nerve Stim implant so we could look at it. It's bigger than we had thought. We also had the chance to ask more questions about this form of epilepsy treatment. It seems so invasive but maybe it could really help decrease Abby's seizures.

Now we just wait for the results of yesterday's EEG. Next Tuesday we will be seeing Dr. M again to discuss the results and talk about what we need to do next. He might want to do a longer EEG test that will provide more extensive information as it will show Abby's brain activity over a 48-72 hour period. We will also be talking more about the VNS therapy option.

Praying for wisdom to know how to help Abby in this issue and all the others that are weighing heavily on our hearts.

Preemie of the Month!

September is always a special month for our family. It's full of birthdays, new beginnings and the start of some beautiful, Fall weather! I love the Fall, I think it's my favorite time of year (aside from Christmas).

Abby's birthday has changed this special month for us. It has become a month full of memories, bitter and sweet. This year she turned 4, which neither of us can believe! As a nice little extra celebration Abby was featured as Preemie of the Month in the Preemies Today newsletter!! I guess it only fits that the article came out this month, Abby's birthday month. Several weeks ago I was asked to share Abby's story; to share what our journey through prematurity has been like. I'm always happy to tell her story, to share how the Lord has worked in the midst of terrible helplessness... but I can rarely do so without shedding a few tears.

So, for those of you who are interested to read about our Preemie of the Month, please visit http://www.preemiestoday.org/news/september2007.pdf This will take you to the article.



On a side note: Saturdays in the Fall usually include dressing the kids in their UT duds, so we feel like we are cheering on our home town, football team!! Both of our families are devout UT fans, so I suppose we feel closer to them when we are showing off our Tennessee Volunteers' pride! Plus we just think the kids look so darn cute in orange.

Abby's new button

Tummy trouble. Since the very first week of Abby's life we have been struggling with this problem. At 7 days old she got NEC and perforated. She didn't start actual feedings until she was over a month old, and even then she had trouble. NEC attacked her gut again in November with a second perforation event which required an illeostomy. She finally had her "intestines put back together" before we took her home at 6 months of age... we had never been sooooo excited to change a poopy diaper!

Then the reflux kicked in full force. First a nasal gastric tube for 3 months, then a fundo surgery along with our little friend, the g-button. (In this first picture Abby is sporting her BARD button) This was the key for good nutrition and growth for Abby. After several months she was finally on the growth chart.

Abby is still growing wonderfully, although those tummy troubles have never left us. The reflux enemy rears his ugly head often, which makes for difficult feedings and the back tracking of oral feeding success. These past 6-9 months Abby has shown increasing discomfort during tube feedings. After many doctor visits, suggestions and tweaks we are continuing to look into the "why" of it all.

Perhaps it's still reflux, despite her adult size dose of Nexium. We are on a trial run of a recently increased dose before we dig deeper to find the culprit and fix it if possible. I just can't describe how unnatural it feels for us to be 'forcing' (not literally) food into our child when it seems to make her so miserable. That being said, not every feeding is this way. It's really a mystery to us.

She got a new g-button (Mic-Key) yesterday which has become a welcome change. Her feedings and meds flow easily through it with out clogging. We are hoping to eventually switch to a blenderized diet... one which actually includes real food, blended up.

As you can see, it was a long day. Abby was a bit traumatized by the procedure which was painful for her. She had a seizure in the car afterwards and then promptly fell asleep. Josiah didn't want to be left out. My sleeping cuties.

Happy Birthday Abby!

Today is the big day... Abby turns 4! We can't believe it. Could it really be true that it was 4 years ago our tiny girl came so early? So much has happened in these past 4 years, but it still feels like it was just yesterday we were meeting Abby for the first time.

Sweet darling we love you more than words can say. God gave us a precious, unique gift when He gave you to our family. How can we thank Him enough?! You bring new meaning to our lives every day, and cause us to look towards our Father more frequently than we might have otherwise. You are our precious angel.

Happy Birthday Sweetheart!

We would love to collect messages on this 4th birthday so we can add them to her special book. Sometimes we go back and read through all the encouraging notes we received from the early days... it would be fun to read new ones to her!

Make an on-line slideshow at www.OneTrueMedia.com

Thanks to Rachel Coleman, creator of 'Signing Time,' for the use of Abby's birthday video theme song, Shine.
(www.signingtime.com)

Hummer's new look

This summer has been a typical, Alabama summer... HOT!! Our poor pup has suffered from this heat more than he has in the past. He started having grand mal (tonic-clonic) seizures! We couldn't believe it. After taking him to the vet several times to get checked out we were informed that this is not totally unusual for a golden retriever to start having epilepsy as they get older. Hummer is only 6 yrs old, but I suppose that is about middle age for a dog.

We traced all of his epileptic episodes to times that he was probably over heated from being outside. Of course he always had plenty of water, and a swimming pool to boot!

Now he has become a primarily "inside" dog... with a new hairdo! Check him out! He seems much happier, and of course much cooler too.