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...