Our Puzzle Continues

I guess the title of this post explains it all.

Abby is still running a low grade fever, but now has a cold on top of it. Her poor little nose is red and sore. At least she is at home and not in the hospital!

Today we took her to see the gastroenterologist. We wanted to share with him our concerns about recent symptoms that have made us suspicious about her reflux. He listened as we recapped the past 5 months of illnesses, hospitalizations, vomiting, irritability and of course the fever. In the end he concluded that the vomiting indicated she is definitely still refluxing despite the meds and J feedings, and he is concerned about the fever. He agreed that the fever could be a sign that she is aspirating stomach fluid into her lungs on occasion. Today he will be reviewing and discussing Abby's previous x-rays with the pediatric radiologist and will also be speaking with our pediatrician to decide what the next step will be.

He said that he would like to have Abby repeat the barium swallow test to check for any obvious aspirations. A CT of her abdomen and chest might also be helpful to get a closer look into her lungs, and check for any other possible source of infection. Tomorrow we expect to hear back from him.

Abby will also have blood drawn tomorrow morning first thing to check for signs of infection there. Not looking forward to putting her through that again, but praying we get a considerate, experienced soul who will only have to stick her once!

So at least we are moving forward in some sort of direction, expecting to find something that might answer our questions.

PS: Afternoon update- Our gastroenterologist consulted with the radiologist and our pediatrician today and they have decided to go ahead with the chest and abdominal CT. It is scheduled for this Friday at 9 am.

On a lighter note, Happy Easter... a little late. Here are some pictures of our fun in TN over the weekend.

A Giant Among Us

Warning: kind of long!

A good word to describe this week would be difficult.

Difficult because Abby continues to run a low grade fever. Difficult because yesterday she had 13 grand-mal seizures (8 of which during the night). Most days this week she has either been inconsolably irritable, or wanting to sleep all the time. The signals she sends us when she is unhappy lately have been: pulling out clumps of hair, scratching her ear and face until they bleed, biting her thumbs, and the most frustrating of all, MOANING.

We've had people look at Abby when we say she has been fussy or upset and think we are joking. They are used to screaming babies with tears who are consoled by a pacifier or rocking. We've been told that we are lucky that she doesn't cry and throw tantrums like most children do.

To be quite candid... we would stand on our heads while chewing tin foil if we could change things and see Abby express her pain, discomfort, frustrations and fear in a "normal" tantrum, preschool style... with tears and all! At least then we would know that something is wrong and we could begin marking off a list of possible culprits.

Because of her deafblindness it would be completely legitimate and rational for her to be incredibly frustrated at life and show it through biting and pulling. Much of the time I think this is the case. So we do our best to keep her hands occupied elsewhere in hopes that she will explore and enjoy learning about her world.

Except when her body gives us clues that something else is going on, like a fever. It's difficult to describe what it feels like to not have any concrete ideas as to why this continues for her. Is it neurological? Is it related to the cyst in her brain left by the bleed? Is it because she has a virus (that keeps lasting)? Now we are starting to brain storm other possible causes related to recent behavior, such as reflux. Is it likely that she has microaspirations in her lungs from unresolved reflux? Could this cause a prolonged low grade fever?

There has been talk of a possible adrenal gland dysfunction secondary to her prolonged seizure activity in the past. Did they mess something up in her brain? From my limited understanding of this idea she would need more blood tests and daily treatments of steroids. (Don't ask me to explain this one yet)

I just don't know.

But a mommy can truly get worn out from worrying, and taking temperatures and watching seizures for weeks on end.

Praise the Lord for husbands who come home to take over for a while. Praise the Lord for dear friends who take the kids so I can regain my sanity, and clean at least one thing in the house.

And lastly Praise the Lord for Veggie Tales. In the past their cartoony voices have quickly gotten on my nerves, but this morning as I let Josiah watch one of their videos I heard a familiar story that brought a new perspective into view.

The story of David and Goliath. I'm sure most of you know this one, so I'll just high light the part that 'struck' me. In 1 Samuel chapter 17 the scene describes the Israelites living in fear of the Philistines and the threat of attack on their people. But one particular warrior created the most fear as he was literally a Giant. Then the Lord brought a young boy from the sheep fields to come forward and accept a great task that no one else was willing to do. In this scripture I was just astounded at the immediate obedience and fearlessness at which David moved forward. No doubting, no turning back.

vs. 45 David says to the Giant "you come against me with sword and spear and javelin, but I come against you in the name of the Lord almighty, the God of the armies of Isreal, whom you have defied. This day the Lord will hand you over to me, and I'll strike you down and cut off your head." (more details)... vs 47 "All those gathered here will know that it is not by sword or spear that the Lord saves; for the battle is the Lord's, and he will give all of you into our hands."

With that the Giant Philistine came forward to attack David but the Word says that "David ran quickly toward the battle line to meet him." And then, grabbing the meager tools that he was comfortable using on a daily basis to protect his sheep, David slung a stone and killed the enemy.

I wonder how much more glory God received through that trial by using someone seemingly insignificant, small or unable to accomplish his mighty mission, rather than using a soldier!

And David didn't cry and tell God he wasn't ready or wasn't brave enough or strong enough. It says he ran to meet his challenge, with only trust in his God and a few small tools. He knew the Lord would triumph. He had faith that God would provide and protect.



Lord please help me be more like your servant David.

Phantom Fever

Week 5 of fever.

Starting from the day Abby got sick with RSV (Feb. 3) and ended up in the PICU, we are now in week 5 of having fever.  Most days it has been low grade, ranging from 99 to 101.  She still isn't quite herself.  On certain days the seizures climb to a worrisome number.  Monday and Tuesday of this week she had more than 10 grand mals per day.

Back to the pediatrician today.  Abby's exam was fine.  Everything checked out.  Her ears and throat looked fine.  Liver, spleen, glands felt fine.  No rashes.  Lungs clear.  No indication as to why the fever continues.

We talked about his conversation with an infectious disease doctor at Children's.  After reporting Abby's most recent blood work and urine culture results there was nothing obvious to worry about.  The tentative conclusion was made that it could be another virus.  

The plan will be that he will speak with Abby's endocrinologist and neurologist to discuss possible hypothalamus disfunction.  An idea that maybe the long seizures have further damaged her brain.  An MRI would be a possible future diagnostic tool, but a complicated one now that she sports her VNS implant.  great.

So now we just continue to watch her and keep record of her temps... and wait.  And pray she doesn't have any more prolonged seizures.

If her temps start to spike, then we will redraw blood and repeat the urine culture to continue to look for the culprit.  

I hope it just goes away.

Home Again

We are home. Abby has been pretty out of it today, mostly sleeping and just lounging in her bean bag chair. She looks a little pale too. I wish we knew what is making her sick.

I guess this is a good opportunity to practice trust and patience... two qualities I'm sorely lacking. The Lord knows when I need the extra time to learn.

Return of the sick princess

Abby is back on fourth floor at Women and Children's.

She had another prolonged seizure at around 10 pm last night. It lasted about 22 minutes and fortunately stopped after giving Diastat on our way to the ER. This time it was different. No fever (initially) and it appeared very unlike her now 'typical' prolonged seizure. I say 'typical' because this will be her 6th or 7th hospital admission this year to date for this kind of seizure. (I've lost count)

In the past they have occurred during a period of fever. Last night has started a new trend... now she can throw us one of these seizures any-ol-time she wants!

Obviously she is sick, so that is what triggered the seizure. She started vomiting at home but we couldn't tell if she was sick from the atypical seizure or from a stomach bug. In the ER she continued to throw up despite getting the "good juice" (Zofran)! This bought us an overnight stay on the fourth floor. yippee.

They did successfully get an IV to work on the 3rd stick. After some IV Zofran she finally fell asleep and promptly spiked a temp of 103.3. It took about 5 hours after Motrin and Tylenol were given, and a sponge bath, before it started to come back down.

Today she seems punky but ok. She's been awake quite a bit. I think the IV fluids are helping her feel better. They did another chest x-ray to check on the status of her past pneumonia; another urine culture and hopefully a flu swab this afternoon. In light of the past 3+ weeks of on/off fever I would like to find out what is going on.

We are ready to have our little girl back home and back to herself!

Thanks to our dear friends who are entertaining Josiah today. I know he's much happier with you than he would be cooped up in our little corner of the hospital.

Cousins Are The Best!

Make video montages at www.OneTrueMedia.com

You can see for yourself what a blast we had together with Christy, Anna and Norah! It's not quite the same without the noise factor... that's what makes it really fun!

Thanks for coming down to hang out with us. We love you all.

(we missed you uncle Lee)

Neuro Day

(These pics were taken just for fun the other day when A & J were "snuggling" in the rocker)


Yesterday (Tuesday) was Abby's Neuro Day. We saw both docs taking care of her neurological system.

First thing in the am we saw her neurologist. Abby's VNS settings are at the goal rate for now, so we will watch, wait, and see how she does over the next 2 months. We discussed her seizure activity, specifically pertaining to her dramatic increase in grand mals after receiving sedation recently. Thinking back over the past 2 times she got sedation for surgery/procedures she had a huge increase in seizures that night and following day. Hmm. Something to consider for the future, although there isn't much anyone can do about it except be prepared for it to happen again.



We also talked about the prolonged seizures she experiences during times of illness. He said it is concerning but there isn't much we can do about them either. She's already on 3 seizure meds plus the new VNS device! As she grows it is expected that her seizure activity could change... possibly for the worse. There is always the option of increasing the dose of one med or trying new kinds.

Because she has epilepsy her body is already prone to manifest stress through seizures. Stress includes any physical strain such as fever, fatigue, anxiety etc. So if we could somehow make her life stress-free we'd be good!



After that appointment we headed to Birmingham to see her neurosurgeon for our yearly check up. No CT needed this time because we had already sent a copy of a previous scan she got back in the fall. This made our afternoon at Children's a lot shorter. The visit itself went fine. He asked how she seemed to be doing and what new things she has learned. We talked more about her seizures and her implant.
After the discussions were over, he said those beautiful words I love to hear "well, see you next year!"

Josiah was a champ during our time at the hospital! (Not so much in the car though-I'm getting good at tossing him goodies from the drivers' seat!)
He's getting so much easier to take places with Abby. For one thing he WALKS all by himself, and he can hold his own drink and eat his own snacks. The biggest thing I see coming in handy is his ability to obey me... all that practicing at home pays off! The entire time we waited in the lobby (about 30 min) he sat next to me on the chairs drinking his milk and chatting about the other kids he noticed. I was relieved for the minimal contact of germy surfaces, and maybe a little bit proud of him too!



Going to Children's is always a combination of sadness, reality and gratefulness. As usual yesterday we saw so many kids with severe health needs. I noticed one baby in particular. She was about 6 months old and tethered to a ventilator, apnea monitor and feeding pump. It took two ladies to just walk her down the hall. One to hold her and carry her vent on their back, the other to push the double stroller laden with countless bags of equipment trailing behind. Josiah and I sat and watched as her mother rocked her and loved on her.

It's always in those moments I feel so humbled and grateful for the mercies God has granted me. As I hugged Abby on my lap, I said a silent prayer for the hearts of her parents.
I noticed them looking at us from across the room and we exchanged understanding, motherly smiles.

As things tend to go at our house this winter season, Abby is sick again today. She has another fever. I guess this means more time at home, more watching Signing Time and less adult human contact. Oh well... Spring is coming soon, right?

PS. Next up, pictures of our fun visit from the Younger Girls! (although they're not really "younger") he he. That was for you Chris!