Girls Weekend + 1 Little Man

The kids and I went to TN to spend a wonderful weekend with my sis and her kids!  We always have a blast together.

Thanks girls!  We miss you...

(Before playing, skip to the bottom of this page to pause/stop blog music)

Playground Process

We have a new swing set outside!  Patrick and I built it together a few weekends ago.  It was fun!  No real plans, just a vision and big pile of wood.

We couldn't have done it with out Aunt Carolyn, who came to take Abby and Josiah duty while we worked.  Thanks Carolyn!

Abby has a new swing just her size with the support she needs.  It works great!  Josiah loves to climb into the fort and touch the trees.

Here are a few pics of the process...

Now they can both swing to their hearts' delight!

Prayer for the Chapmans

This morning Patrick called to tell me the tragic news of little Maria Chapman's death.

Report from the Tennessean:

"Steven Curtis Chapman's youngest child died Wednesday evening after being struck by a car driven by her teenage brother in the driveway of the family's Williamson County home.

Maria, one of the Christian singer's six children, was taken by LifeFlight to Vanderbilt Hospital, which confirmed the death, according to Laura McPherson, a spokeswoman for the Tennessee Highway Patrol. 

The 5-year-old was hit by an SUV driven by her teenage brother, she said. Police did not give the driver's name.

The teen was driving a Toyota Land Cruiser down the driveway of the rural home about 5:30 p.m. and several children were playing in the area, McPherson said. He did not see Maria in the driveway before the vehicle struck her, she said.

"It appears to be a terrible accident,'' McPherson said.

No charges are expected, she said. The accident was witnessed by two other children; the entire family was home at the time, McPherson said."

I can't imagine the shock and pain this family must be experiencing today.  We wanted to send this out so that folks who haven't heard yet could be in prayer for this family.  Steven C. Chapman has been one of our favorite Christian music artists for a long time.  His passion for orphan relief and international adoption has helped hundreds of children, especially in China.

Maria was one of three Chapman daughters adopted rom China.  His blog includes several darling videos of Maria and her sisters.   

Our hearts especially go out to the brother driving the SUV yesterday.  His life has changed forever.  Please pray for his heart during this tragedy.  He needs special comfort and healing.

Another New Button

(Abby with temporary Foley cath in place of GJ-tube)
"Rock of ages cleft for me, let me hide myself in thee;

Let the water and the blood, from thy wounded side which flowed,

Be of sin the double cure;

Save from wrath and make me pure.

Not the labor of my hands can fulfill thy laws demands;

Could my zeal no respite know, could my tears forever flow,

All for sin could not atone;

Thou must save, and thou alone."

This hymn (sung by Chris Rice in his new album Peace Like A River) played loudly as Abby and I drove to the hospital last Friday morning for another GJ-tube replacement. It was pulled out (by accident of course) during a therapy session the day before.

(Emergency tube securely taped, so as not to lose it while in the car!)

My stomach was in knots and I dreaded the day ahead of us.

I think my body/nerves have become programmed some how to do certain tricks when I drive near a hospital. It probably started when I was in nursing school... waking up before dawn, feeling nervous about my new responsibilities and spending hours at a hospital. Then as a labor and delivery nurse driving to work feeling the pressure and anticipation of my shift... not knowing what sort of night it might be. Some were joyful as I helped new people enter the world; some were grief stricken as I cared for new babies who would never take a breath.

But this feeling was mostly solidified during the hundreds of trips I took to the East TN Children's Hospital to visit my tiny baby in the NICU. It's difficult to explain or describe the sinking sense a parent gets while making these treks; knowing your child is critically ill but not knowing what will happen from moment to moment. Hoping against hope that your child will have a good day, and that you can hold it together until you are alone.

So going to hospitals now brings all those emotions to head, even if I'm just going to see someone I barely know. The smells, the sounds, the waiting rooms; they all stir up an incredible sick feeling deep in my gut.

Anyway, listening to "Rock of Ages" on our way to Abby's procedure somehow lifted the heaviness and temporarily soothed my pitted stomach. I realized once again how much I need to give Abby over to the Lord. This process has taken me 4 1/2 years to learn and I'm still forced to practice every day. Some days my grip is so tight I lose sight of everything else around me. It's like I can't move my head, I'm just looking straight at Abby, blocking all other voices and images out so I can try to fix her. This is probably why there are days where I feel so totally drained, depleted and discouraged that I haven't "fixed" her. Isn't this what mothers do? Kiss the booboo's away, wipe the tears and hug their children until they are better! It works with Josiah... why won't it work for Abby?

"Thou must save and thou alone."

(Josiah-after waking him up to take Abby to the GI doc)

Back to Abby...

Friday ended up being a longer morning than I had anticipated. The same nurse we have seen the past 4 procedures came to start Abby's IV. I was glad to see him because he is one of the only people who have had luck with her troublesome veins. He brought another nurse with him and together they searched and searched for a useful IV spot. They stuck her three times and finally got a good vein... but it took over an hour. While they looked, they also talked with me about getting some sort of central line in for Abby. They emphasized that with Abby's issues, her young age, and the poor quality of her veins, this process of starting IV's will only get worse with time.

This isn't the first time a porta cath or some other form of central line has been mentioned for Abby. The last ER visit and several hospital stays, various docs and nurses have made comments about it... after struggling to start an IV or draw blood. It's probably something we will be looking into over the next few weeks before her surgery. Perhaps both could be done at the same time.

They kept Abby back in the procedure room for much longer than usual. It was making me nervous, but the nurses assured me that she was fine. The last time she had her GJ replaced it only took about 15 minutes for the entire procedure.

Finally after 45 minutes they wheeled her back into the room. The nurse said he had trouble getting the tube in, not sure why. Possibly resistance from scar tissue or something. Thank goodness she was put to sleep.

At that point I was just glad to have her back! She was pretty sore for the rest of the day and a little wiped out.

"Nothing in my hand I bring, Simply to the cross I cling;

Naked, come to Thee for dress;

Helpless look to Thee for grace;

Foul, I to the fountain fly;

Wash me, Savior, or I die.

While I draw this fleeting breath, when mine eyes shall close in death,

When I soar to worlds unknown,

See Thee on Thy judgement throne;

Rock of ages, cleft for me,

Let me hide myself in Thee."

Fundo #2

A new week of beautiful Spring weather has brought with it some relaxation and retreat from the ever present worries of the past month.  Our family enjoyed a fun weekend out doors during a church family get away!  The fresh cool air and peaceful surroundings helped calm our souls and forced us to breathe deeply of the Lord's goodness.

Although Abby got sick on Saturday with strange seizures and vomiting, we were able to stay in the mountains with our friends and family instead of rushing to the hospital.  At one point it seemed imminent that Abby was starting one of her relentless, "status"(prolonged) seizures, but thankfully she finally fell into a restful sleep.  We had prepared to leave and the van was packed, but a dose of Tylenol seemed to stop the seizure cycle.  

Before our family drove to TN for this wonderful weekend, we had a lengthy discussion with Abby's GI doc about the test results we had been given.  Without repeating all the details, our conversation mostly boiled down to the fact that Abby's esophageal biopsies continue to show reflux regardless of aggressive treatments.  He felt this finding in addition to her clinical symptoms pretty much closed the deal on the need for surgery.  We agreed that if a second Fundoplication gave her a higher quality of life, than it was worth the risk of surgery.  

We have an appointment with a GI surgeon June 4th, at Children's Hospital in Birmingham.  In the meantime we have been trying to squeeze in sooner, waiting for a cancelation.   We are hoping that she could have the laparoscopic method done this time because it is a much simpler procedure with a less painful recovery.  Because Abby has had this surgery done before using the "open" method, we aren't sure if she could have the lap method this time.  From what we have read it is unlikely that she can, due to the scar tissue in her abdomen from multiple abdominal surgeries in the past.  The open method includes cutting her abdominal muscles again, which will set her back physically for a long time.

Just like most procedures there are no promises of complete healing, but we are praying for exactly this!  Looking back to her first Fundo (June 2004) and the months following, we now recognize all the ways she made progress when reflux wasn't her main enemy.  She was eating some baby foods and was able to gain weight with her G-tube feeds. She was a happy, vomit free baby.  We are praying to see these and hopefully more improvements post-surgery this time around!!

It has been a difficult, time consuming and draining decision to do surgery again.  At this point we feel that we have given enough effort and time to see improvements, and none have come.  In reality, over the past 6 months her symptoms continue to worsen.

I know I've said it before, but I have to say it again... I Hate Reflux!  Never in a million years would I have imagined my child could suffer so much from something most people consider as a mere discomfort or nuisance.  It has become a life altering disease for Abby, as I know it has for other preemies as well.  You just can't imagine how difficult it is to not be able to feed your child, watch them enjoy yummy ice cream or drink a delicious smoothy, until you have one yourself.  We've long passed the initial disappointment of it and have come to the place where we just want her body to be fed and for her to grow and thrive.

At feeding clinic (every 6 month appt.) last week they refused to try to feed her anything because her Barium swallow test had labeled her "at risk for choking and aspiration" due to her inability to swallow.  Instead of inability I would say it's more of a refusal to swallow.  So we spent the whole time discussing her inadequate growth and the changes we needed to make to her j-feeds.  Basically she has not gained any weight in the past 2 years but has grown over 3 inches.  She is 0%ile for weight and 1%ile for height.

Honestly I'm not terribly worried about the growth chart because Abby is her unique self, a former micro preemie and a child with CP.  All of which should (and some do) have their own growth charts!

If you have #1: read this far, and #2: haven't fallen asleep, than you truly do love us!  The wordiness of this post is probably due to the lack of posting lately and the depth of emotions at our house.  Please forgive me, I'll try to keep them shorter!

And thank you for caring enough to trudge through the details with us.  But most of all we covet your faithful prayers for our little warrior!

Test Results

Results came in today. First of all Abby's blood work came out normal! Yeah! It doesn't look like she has any sort of infection (CRP level) and her hypothalamus is "probably" not the cause of her wacky temps. I suppose we can chock her low grade fevers into the "Fever of Unknown Origin" box and leave them there. Honestly we haven't been paying too much attention to her temps lately because other issues have taken precedence. Yesterday it was 99.8, which 'technically' isn't considered a fever. Hopefully this issue will eventually resolve itself... but in the meanwhile, we will turn our energy towards other things.

Reflux.

The GI office called with her Gastroscopy and pH study results. Despite efforts to prevent/decrease Abby's reflux over the past 6 months (increased Nexium, and J-feedings), her esophageal biopsies showed reflux. Although this is discouraging, we aren't surprised.

Official report: "The pH probe study didn't show a lot of reflux but what did come up is very irritating to her tissue".

This report didn't seem very quantifiable or comprehensive, so I pushed for more details. Unfortunately the doc doesn't make these calls himself, so the nurse who is just reading from a brief summary can't usually answer our questions. As I tried very hard to be patient and friendly I still wanted more info. She was able to tell me that the test showed a total of 17 episodes in the 24 hr period. This didn't sound too bad to me initially, remembering that Abby's first pH probe (6 months old and 5 lbs) showed over 500 episodes! But then realizing that she is not getting any feedings into her stomach and is only secreting gastric juices that are still backing out of the stomach into her esophagus seems concerning. She wasn't able to tell me how long the episodes lasted and if they correlated with the diary we kept during the test.

The doc ordered an increase in her Nexium to 3 times a day, and encouraged us to try Carafate (a liquid coating). This should be interesting as Abby will have to swallow 2.5cc of liquid. Might not seem like much but you'd be surprised what a challenge this can be in kids with dysphagia and oral motor dysfunction... not to mention a kid who just plain Hates to swallow! We'll see how this goes. We are supposed to give it 2 weeks before we consider more aggressive measures.

I'm guessing we will go back in to speak face to face with the doc about the results and obtain more detailed information and hopefully form some type of plan.

Abby had feeding therapy today. Her OT has noticed a sharp decline in her oral skills and swallowing since last fall. Abby no longer tolerates the hour long session like she did before. There are no signs of swallowing at all, rather big sloppy messes in the bib. We still plug along trying to give her a fun oral experience with hopes of feeding improvements to come.

Josiah has started potty training! Yikes. I don't know how committed he is to his new potty chair yet, but I guarantee he will have plenty of opportunity to become very familiar with it. We bought him some super cute Big Boy "undies"! He likes wearing them.

Useful Potty Training tips are welcome!

Endoscopy Day

Today Abby had her Gastroscopy procedure. We got to the hospital bright and early at 7 am for outpatient admission, then off to the procedure unit.

After a clear warning about the quality of Abby's veins, the nurses were able to find a good one for her IV and blood was drawn for labs after 4 sticks. Prayers were being lifted up not only by me during this yucky time, but also by the nurses! I was so thankful to see blood dripping into the little viles. I'm sure the neighboring patients were wondering why we were cheering and clapping behind our curtain.

Abby truly is a brave soul. I was so proud of her. She tolerated the Gastroscopy procedure really well and didn't need any extra support while being sedated. The GI doc discussed what he saw and explained that her esophagus actually looks a bit better than what he saw last October! I could tell by looking at the pictures he took. He added that just because the esophagus looks better now after 6+ months of J-feedings doesn't mean that she isn't still having terrible reflux. We discussed the Fundo surgery again and he pretty much left that up to us. If her symptoms remain constant and she continues to seem uncomfortable then we should consider it.

The pH probe was placed after the procedure while she was still asleep. Another big praise... one less thing to stress her out. You can see in the pictures the tube taped to her nose and cheek... and notice how cute she looks even with it in!

Poor baby has to have elbow restraints on both arms to keep her from pulling the tube out. The nurses were surprised how quickly she was able to reach for the tube as soon as she woke up. So for the next 18 hrs she will be an unhappy, thumb-less little girl. For those of you who know how much Abby loves sucking her thumb, this is a problem!

After all that excitement we headed over to meet a new doctor added to Abby's list. She was very nice and very thorough! Naturally our discussion was long as we described Abby's history including NICU stay and all the surgeries. This visit focussed mainly on her seizure activity and patterns we've noticed. She increased the VNS settings and changed a few details about her meds.

We got to see the EEG print out while the doctor explained the results. Abby had several spiking episodes occurring in the right parietal lobe lasting several seconds. It is this type of brain activity that produces seizures if it keeps firing for more than 10 seconds. We shouldn't see any clinical signs (or seizure like activity) when these spikes are short lasting, like what we saw on her test. She pointed out 4 or 5 different episodes during the 1 hr test where this spiking was noted. It was nice to get a visual and an explanation of what they are looking for during the EEG. Fascinating but heart heavy information to hear.

As usual, Josiah hammed it up with the nurses. They thought he was funny. He remembered where all the stuffed animals sit on different desks from last weeks' visit!