Rejoice in the Lord

Psalm 32: 5-11

"Then I acknowledged my sin to you and did not cover up my iniquity. I said, 'I will confess my transgressions to the Lord'- and you forgave the guilt of my sin.

Therefore let everyone who is godly pray to you while you may be found; surely when the mighty waters rise, they will not reach him.

You are my hiding place; you will protect me from trouble and surround me with songs of deliverance."

"I will instruct you and teach you in the way you should go; I will counsel you and watch over you. Do not be like the horse or the mule, which have no understanding but must be controlled by bit and bridle or they will not come to you.

Many are the woes of the wicked, but the Lord's unfailing love surrounds the man who trusts in him.

Rejoice in the Lord and be glad, you righteous; sing, all you who are upright in heart!"

We rejoice because the Lord is trustworthy! He is able. I read this passage at a moment of need, in the dark of night. Lord, help me not be like the mule.

We met with Abby's Endocrinologist Wednesday morning. This individual is always very kind and thorough, asking about all the areas of Abby's health and development. I appreciate that.

We discussed her fevers and the frequent irritability that has become part of her days. He explained about her (known) hypothalamus dysfunction and how that could possibly be contributing to her temperature fluctuations. He also mentioned that she most likely also has a growth hormone deficiency. This could play into the way her body handles stress, especially illnesses. He said it was a good sign that she has been able to fight off infections on her own.

He was concerned with her increase in seizures and her decline in development and general interest in activities. Labs were ordered to check different levels related to the things we had talked about. He brought up her shunt as being a possible culprit. Usually I'm not concerned about a shunt infection, but remembering that she did have surgery near her shunt in December made me worried. The risk of infection is there.

We are waiting for our pediatrician to help set us up with a good "sticker" at the hospital, in order to spare Abby any unnecessary pain. Most likely he will order additional labs to check for infection also.



I'm slowly learning to give everything up to the Lord. It's difficult not to worry, but I know He is able.

"Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."

Ephesians 3:20-21

Family Fun

Families are so wonderful! Last weekend we headed to TN and enjoyed some fun-in-the sun with ours.

Special time with Grandma, Papa and Aunt Connie, and a trip to Frozen Head State Park with cousins Anna and Norah. The kids enjoyed blowing bubbles and throwing rocks in the stream. I think they were more interested in the water than they were in the slides!







One last visit with Bill, Shannon and little Maddie rounded out our mini vacation. The "boys" (Patrick and Bill) took off Thursday to ride ATV's in the mountains. From the looks of their clothes, they had a blast in the mud! (literally) We were just glad they came back in one piece.


Abby update:

The GI office called last week about Abby's Barium swallow test results. The nurse explained that they are treating her reflux as aggressively as possible at this point. She told us that if Abby continues to have symptoms or we can't decrease her feeding time and keep her at a good rate we would need to consider the Fundoplication surgery.

Patrick spoke with the GI nurse again today about Abby's continued symptoms (moaning, burping then pulling hair and acting very upset, etc) and requested that we look into it further.

At this point it's not a question of whether she is refluxing, but how much and how often. There were times today when I literally heard her burp, saw the bubbles in her mouth and proceeded to watch her cough from it. Meanwhile she started pulling her hair and putting her fingers in her mouth to bite. It is incredibly draining to observe this happening over and over again... with nothing in my power to help her.

In the back of my mind I'm wondering where in the world is this reflux coming from? She isn't being fed in her stomach any more so it must just be stomach juices. How could such a small girl pump out enough juice to cause such BIG problems?

I guess it's no different than when she was a 4 lb baby with the same symptoms. The hope was always that she would grow out of it.

Next Friday she is scheduled for another upper GI series to check her esophagitis and see if it has changed. While she is asleep for this procedure they will place a pH probe (NG) that will stay in her esophagus for 24 hours. It will be fun trying to keep that in... but at least she can wear it home this time.

We are praying for clarity and for wisdom in this decision. Hopefully these tests will give us a bigger picture. Only the Lord knows her needs, and only He knows how much we want to make her well. In the end, we trust that He will walk us through this dark place.

Back to Radiology

(A sliced image from Abby's CT)

Last week Abby had a CT of her chest, abdomen and pelvis. Mostly to look for signs of aspiration in her lungs, but also to check for any other possible cause of her fever. We heard from the GI doc's office with a report that the CT "looked mostly ok" and that it didn't look like she was "aspirating all the time." Not sure exactly what that means except that we aren't as concerned about aspiration as were before the scan.

(This one's cool b/c you can see her VNS implant-upper right)

For a few days I inwardly felt like we should just give up looking for a reason. During that time I pretended her temps were normal and only checked them occasionally while skipping a few days. On the days I did take her temp it has been either just under or just above 100 F. The bummer is that she seems like she feels yuck. Today she mostly wanted to be held or wanted to sleep.

We went to the hospital again today for her Barium swallow study. Fortunately the OT that works with Abby on feeding every Monday was available to administer some of the test. It's always nice to see a familiar face. The test itself went fine, although Abby refused to swallow the nasty Barium yogurt so they weren't able to see what happens during a swallow event. We were able to then feed Barium juice into her G-tube in an attempt to observe her typical daily reflux episode. As luck would have it we didn't see much action during the short time the radiologist was willing to stand there and wait. Of course as soon as he left the room she started arching her back and then we saw the Barium juice come rolling out of her mouth. At least the OT observed it so she can include it in her notes.

So all in all we are back to square one with no answers to the fever puzzle.

On a fun note, we had special visitors this weekend! Patrick's cousin Bill, his wife Shannon and their darling little girl Maddie carved out 2 days to come hang out at our place. Bill is in the Marine Corps and has been over seas much of the past several years. We don't get to see them as much as we'd like, so this was a treat. It was also the first time for us to meet little Maddie. What a doll baby, and so happy! It was fun seeing the cousins together.

HAPPY BIRTHDAY JOSIAH!

Darling Boy,

We can't believe you are 2 years old already! It amazes us to think back and remember all the joy you've brought to our family in such a short time.

Son, you are a wonderful blessing and we are so proud of you. Thank you for being a great brother too.

We love you Josiah,
Mommy, Daddy and Abby

March 30, 2008
Josiah's Birthday Movie...

Waking Up On My Birthday

My Special Birthday Throne!

Presents!

I Love Chocolate!

My BooBoo's

One of these days I'm going to have to start protesting when they take me to that hospital. Just because I'm quiet and can't see very well doesn't mean I'm not on to their plan! There is no other smell like that of a stinky hospital.

Hmm. Today mommy took me back there again. I'm not exactly sure what they were looking for, but they sure did have to poke me a lot! I heard daddy tell them to STOP... I know he always wants to rescue me! So this time I got my way and didn't give them any of my blood.

Then they strapped me to that cold, moving board. This part wasn't too bad though. I think they were trying to look at my insides.

I've gotten used to being very brave. My mommy and daddy need me to be; I sense that. They've always told me I was a special girl and a strong fighter, and I guess I am. My hands and arms are sore again, but I think I have cute band aides to cover up my booboo's.


I haven't been feeling too good these days and I suspect todays events were mommy and daddy's way of trying to fix me. At least now I can relax in my soft, bean bag chair and rest my eyes a bit. I hope tomorrow we can just have a fun day with no more booboo's.

My brother is my best friend. He's starting to share toys with me and sometimes he sits with me and holds my hand. I like it when he makes mommy and daddy laugh... this is what he was doing last night.

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.