Are You Out There??

Hello all - yeah, yeah it's been forever.

Here's the question...do I keep this blog? When I was blogging on a regular basis I just wasn't sure anyone was reading. I know of about 3 people that were faithful followers and would comment on posts.

I have been very active on Facebook and enjoy keeping up with many family and friends...maybe that's where I should put my focus?

Please feel free to cast your vote....to blog or not to blog. That is the question. :)

More later (maybe)...

Updates, Updates and More Updates

The rain is still pouring down...

Dad remained in the hospital until last Friday. His heart checked out just fine, but they did find
pneumonia. He will have a follow-up this week just to make sure everything is on track from being in the hospital.

Unfortunately, Mom was admitted last Thursday. We thought at the time that her potassium level was causing her a great deal of confusion, disorientation, etc. Her level was low so they admitted her to administer IV potassium and assess her to make sure they weren't missing anything else. Well...she continued to decline the first night she was inpatient. She could not communicate or function properly. The doctors checked for new stroke evidence due to her history with mini-strokes, but that came back fine. They continued to do testing and found that she is having seizure activity. They are trying to find meds to get them stopped and then they will move on to a maintenance dose. She is really struggling and needs prayer.

So...our appointment in Cincinnati was a little overshadowed by all of this. Thankfully, Neal took the day off and went with me. The docs are very pleased with Bryce's current status. He seems to be doing well with his new laxative program and we won't be making any changes at this point. Taylor is the tough one. We are going to be changing how we do her irrigations so we can find what volume of saline her body can handle - the hope is to move on to higher volume enema without the abdominal pain and vomiting we experienced before. If we can do enemas successfully for about 3 months and keep her clean we will then move on to laxatives again. She will go through another bowel management week at that point. This is probably confusing and who knows if I'm making any sense after the amount of sleep I've had in the past 2 weeks! Please feel free to ask any questions.

Basically, it is baby steps with Taylor's colon. Patience is the lesson here. Have I mentioned that I'm not very patient??!!

I am very thankful that most days she feels good and leads a fairly normal life. Well, it's our normal I guess. We continue to try to have fun and enjoy our summer. I'll try to post pics soon, but no promises.

Thank you all for your continued prayers and words of encouragement. We know the Lord will see us through and we continue to praise Him in the middle of this storm.

More later...

Heading to Cinci....Again!

Hi there - we have managed to have a little fun this summer despite all of the storms we are riding out. Let's see what all we have done since I last posted:

Celebrated my nieces 1st birthday party - she is a 4th of July baby.
Enjoyed fireworks with the kids for the first time ever.
Had big fun on playdates with our friends Addy, Evan and Clayton.
Celebrated Addy and Evan's birthdays at a very fun pool party.
Went camping for 3 days.
Had a fun night at the county fair - supper, animals, 4-H projects and elephant ears!

Onto the not-so-fun stuff. Mom spent 2 days in the hospital last week. Blood pressure
bottomed out. Her primary physician is being very thorough and has found some issues
with her potassium, etc. He is addressing those issues and running a couple of other tests.
She will also see a hematologist next week to address a possible anti-coagulation issue.
We are trying to help stay on top of it all.

After that Dad decided he needed some attention and took a ride in the ambulance late Sunday.
He has had several things happen in the past month: heat exhaustion, stomach flu, B-12 bottoming out and a flare up with his gout. He has also been depending on his inhalers much
more lately and having some chest tightness, so his doctor was waiting for an echocardiogram on the 28th. Well, Dad continued to get worse and just could not function without struggling for breath. He is still in the hospital as of today. They are continuing to run tests and are looking closely at his heart and lungs.

Please pray for both of my parents health and emotional state. They are really struggling
with all that has happened recently.

Taylor and Bryce go back to Cinci tomorrow. They will both have x-rays and be re-evaluated
with one of the specialist. We will just be reporting as to how Bryce has responded to his new
management program and discuss if we need to make any adjustments. We will also talk about
Taylor's post-op situation. She has only stooled 3 x's on her own since we left the hospital. Not sure what their thoughts will be. We'll see.

So on we go with this little thing called life. :) It has been quite exciting at the least.

We continue to call upon the Lord and petition on Taylor's behalf. All in His time.

"In my distress, I call(ed) upon the Lord." Psalm 18:6

"The Lord's our Rock, in Him we hide,
A shelter in the time of storm;
Secure whatever ill betide,
A shelter in the time of storm." - Charlesworth

This was from my devotion on Friday - very appropriate for all we have endured this past
week. God always knows what I need to hear.

We will keep you posted on Mom, Dad and what we learn at the appts. tomorrow.

More later...

Happy 4th of July

Time flies when you're not having fun...oh, that's not how the saying goes. Taylor has been well. We are still irrigating 2-3 times a day (most days are 2). She is tolerating this much better. It no longer takes a team of people holding her down. She will lay and watch a movie while myself or Daddy performs the irrigation. The team in Cinci wanted to give her another month and re-evaluate her situation at that time. She is still not stooling on her own (we did have one time where she had a small amount of stool, but that has been it so far). We are trying not to be frustrated by the fact that her colon still hasn't "woke up" yet. The team is being patient, so we are trying to follow their lead.

Bryce's tests went great! Daddy went in with him and the report he gave was astonishing! He was still for all of his x-rays and he only cried for about the first 5 minutes of his contrast enema. After that he just hammed it up with the nurses! Can you believe that?! What an answer to prayer!

Our specialist concluded that Bryce does have the same situation as Taylor, but we have caught it much earlier. His colon looks great - no distention. He has the "lazy colon" issue like Taylor. We have started him on daily laxatives and pectin to maintain his colon and keep everything moving. He will be re-evaluated in a month also. So we head back to Cinci on the 24th for both kids.

So...that brings us to the 4th of July! Rain is in the forecast, but looks as if it will be gone by 7ish. We hope! Neal and I have decided to take the kids to see fireworks this year. We might be crazy since they don't even start until after 10:00. Oh well - we'll see how it goes. I will probably have cranky kids in church tomorrow.

Thanks again for following us on our journey. We are so thankful for the cards Taylor continues to receive. We also continue to feel all of your prayers daily. Someday I will get thank you notes done.

Have a very Happy 4th!

More later...

Have Been Home For A Week

My apologies for dropping the ball on blog updates since we have been home. I've quickly updated my FB page most days, but haven't made it on the computer long enough to update here. I'm sorry if we have kept some of you hanging.

We were so thankful to be home, but it wasn't without quite a few bumps in the first few days. Taylor continued to have severe abdominal pain and vomiting. Tuesday was the worst. We almost took her back to Cinci. She stayed tucked in a ball because the pain was so intense. She only sat up to vomit. The decided to take her off of the ex-lax completely to see if that would resolve this major issue. She was a brand new kid once we had it out of her system for about 24 hours. No pain/no vomit. Could not believe the difference. She has started eating and drinking MUCH better.

She felt so good Wednesday! We even made it down to the Warren County Fair for a while that evening. She had fun but tired out pretty quickly. She rode in the stroller the rest of the evening.

It was so good to see friends and family and EVERYONE was excited to see Taylor. :)

The drawback to taking her off the ex-lax meant we needed to do irrigations 2 -3 times a day to keep her cleaned out. This was quite a challenge since we need someone to hold her while I perform the irrigation. A big thank you to our Pastor's wife Polly and Nanny Austin helping during the day while Daddy was a work.

We headed back to Cinci yesterday for a check-up and talk about the near future. She looks great and is doing great. They were very happy with her progress (especially since we eliminated the ex-lax). We are switching to daily enemas (not the over the counter type). A large volume of saline and glycerin will run in thru a tube over about 10 minutes and then will be held for about 10 minutes. She will then sit on the potty to evacuate all of it (hopefully :). This will only need to be done once a day to keep her colon cleaned out. Something new for Mommy and Daddy to learn...yippee! Keeping her cleaned out and comfortable is the goal, so we will do it.

I wanted to clear up some confusion. We must of not done our part to help everyone understand the outcome of this surgery and what the future holds for Taylor. We knew going into the surgery that this wasn't a simple fix and all will be well forever. The goal of the surgery was to remove the HUGE area of the colon that was collecting all of the stool. Removing this section created a straight shot for the stool to move thru the colon into the rectum. The problem is the remainder is Taylor's colon is still "lazy" - it doesn't have the ability to move the stool thru it. Therefore we knew she would still need to be on a small dose of laxative (with Senna - this is the only product that moves the stool thru the colon. Other products just soften/loosen the stool so it is easier to pass). Unfortunately, Taylor has not been able to tolerate the ex-lax post surgery so enemas are necessary to keep the stool moving thru her.

Daily maintenance will be necessary to protect her colon from becoming dilated like it was before due to chronic constipation. She will need to be very careful all of her life to care for the part of her colon that is left. That means: high fiber diet, no constipating foods, 3 meals a day (no snacks) and daily enemas. Not a pretty picture, but we have to deal with the hand that we were dealt.

So I hope that clears up some questions and confusion.

We head to Cinci on Thursday and Friday with both of the kids. Bryce will be undergoing tests on Thursday to determine if he has the same situation as Taylor. They will both have x-rays on Friday and see the doc. Will keep you posted on what we learn. The tests Bryce needs to endure are uncomfortable and very scary, so please pray for him and Mommy and Daddy and we go thru another trial.

Honestly, we are struggling every day to face these challenges head on, but we continue to lean on God thru it all. We know He is right there with us every step of the way and when we can't walk the path ourselves we know He is carrying us.

"And the God of love and peace will be with you." 2 Corinthians 13:11

More later...

HOME!

Heading out in the next hour!

Final Day??

To catch you up in case you didn't see my status update on FB - we did not go home yesterday. Taylor was vomiting at midnight the night before, so we stayed another day to make sure everything was okay. We think she just had a bit too much to eat (her stomach is still adjusting to solid food). Thankfully we didn't have anymore vomit the remainder of the day.

So, that brings us to today. We already went down for her x-ray. Breakfast is coming. Taylor will probably enjoy some time in the playroom while Mommy showers. Irrigation before lunch. If all goes well....HOME. Of course Mommy needs to pack lots and lots and lots of stuff into the van first.

That is the plan as it stands, so please pray we stay on track.

We are missing our church family so bad this morning - just can't wait to get back to "normal" life.

More later...