Tuesday, April 28

Just a quick update. It turns out that Taylor has phenomena and a urinary tract infection. So she is back in the hospital for a couple of days while they push some antibiotics. I guess it's a little reminder that Talyor has come so far, but will continue to meet challenges along the way. The good news is that she has Christ leading the way as she overcomes all odds and continues to be a testament to His word.

God Bless

~

Monday, April 27

It’s been a big week. For those that haven’t heard, Taylor got to come home for good on Friday! We also just found out today that she is going to be approved for in-house nursing for 8 hours a day! This will be a huge help for the family. Below is an update that Tammy sent last night. I’m so proud of all of them, and am grateful for the blessings the Lord has bestowed.

Late addition: On the downside, Taylor has been running a temp off an on through the day and Tammy has taken her back to Pitt as a precaution. May the Lord continue to bless her and heal our little angel.

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A lot has transpired over the last several days. On Friday, our family became whole again... we brought our baby girl home! As I was leaving the hospital, I found myself with a mix of emotions. I was so extremely happy that the day had finally come to bring Taylor home. However, I was also nervous and sad to be saying good bye to the friendships I have made with the rehab staff. The nurses, therapist, and doctors there have become part of our extended family. They were sad, but also happy to see her go. We will never forget what they have done for our little Taylor....

Having Taylor home has been wonderful. The boys are adjusting to her and Jeff and I are trying to figure out how to balance everything. It's like bringing home a newborn again!!! Tate walks around the house saying, "baby." He tries to love on her, but doesn't realize flopping down on top of her is not what we want to see. Tanner is doing an outstanding job playing the big brother role. He constantly tells us that he loves his baby sister.

Today, we brought Taylor to church. As, I sat there and listened to the choir sing, I had such an overwhelming feeling of gratitude. Here we were, surrounded by our church family who has been praying for our little darling for almost 5 months now. You could feel the love all over the church. Jeff and I are very blessed to be a part of such a great church family!

This afternoon, I was talking to a friend of mine about Taylor. She shared with me how Taylor's story has changed her life. She expressed that she was back in church and that her church asked about Taylor every Sunday. I think, through God, Taylor has changed a lot of lives including mine and Jeff's. Taylor has given us strength, taught us how to be patient, and reminded us not to take anything for granted. She has also taught us to have FAITH. I remember the first day Taylor was in the ICU. The doctors said many times, "IF" Taylor makes it through the night... As, scary as it was, God was always there for our little girl and he's here for us, too. I think a lot of people have grown spiritually because of the strength Taylor has shown. We are going to keep holding on to our faith in Jesus and keep praying for our little princess. She has come so far and we are so blessed to have her in our lives!

Tammy

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"Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. Isaiah 41:10

God Bless

~

Thursday, April 23

To precious, had to post.

God Bless

~

Saturday, April 18

It's been a whirlwind week, but Tammy was able to send an update last night.
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Here's the latest news...

As you know, Taylor had surgery on Tuesday. Everything went well and she has not thrown up since the surgery. She was extremely sore the first couple of days, so they kept her on morphine, tylenol, and valium to help control the pain. Today(Friday), she seems to be a lot more comfortable. We arrived back to Pitt Memorial Hospital around 3pm. Our case worker, came in shortly after arrival to tell us that our insurance has granted Taylor 7 more days of therapy! Before the surgery, Taylor really wasn't getting the full benefits of rehab, so we are very grateful for this. Although our insurance company has questioned a lot of things, they sure have been coming through for us. Anyway, it looks like April 24th should be the date to get her back home! We have a long ways to go, but God has given us endurance through this ordeal, and we are so thankful to be given the opportunity to take care of our baby girl in a loving and familiar environment. God is great! Amen.

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God Bless

~

Tuesday, April 14

I just received a text from Jeff.

"Taylor pulled through with flying colors! Praise the Lord!"

God Bless

~

Monday, April 13

First off… I hope everyone had a joyful Easter weekend. Another reminder of how awesome Christ is.

A quick, but important update on Taylor. Taylor and family arrived safely at Duke on Saturday to prepare for her G-tube surgery. Her surgery is scheduled for 11:00 am tomorrow morning (Tuesday). I know we have all been praying for Taylor, and she will be in our hearts and prayers during surgery. As mentioned in earlier posts, in Taylor’s condition there is risk involved with this surgery. We are confident that God will be guiding the surgeons hands and embracing her soul as she gets through a successful surgery. May she borrow a piece of all our hearts for added strength. Thank you to all for your love, support, and continued Prayers for Taylor, Jeff, Tammy and the boys. This is an important step for Taylor and we anxiously will wait for the good news.

The Ketchum family posted a nice comment on Friday with a bible verse that I found very inspiring and appropriate to tomorrow’s events.

"I am the light of the world. If you follow me, you won't be stumbling through the darkness, because you will have the light that leads to life." John 8:12 NLT

God Bless
~

Wednesday, April 8

JDNews.com has a nice article about Taylor and family. Thought I would pass it along.

http://www.jdnews.com/articles/taylor_63475___article.html/hospital_memorial.html

God Bless

~

Monday, April 6

Since my last entry, Taylor continued to threw up 2-3 times per day. On Tuesday, March 31st the doctors decided to put Taylor on continuous feeds(24 hours a day). Now, she gets fed one ounce over a one hour time period. It's a little bit of a set back because this is how she was fed in the ICU. The initial goal was for Taylor to eat like a normal child over a five to ten minute time period. Unfortunately, Taylor has went down hill with keeping her nutrients down so they had to do what was best for her in order to give her calories. Since they have started the continuous feeds, she has only had a couple spit ups.

Also, because Taylor is not keeping food down, she runs the risk of aspirating when she throws up. It was recommended again that we re-consider the G-Tube surgery. She is still considered a high risk case, but Duke has agreed to do the surgery. Jeff and I have prayed about this decision and we are going to go through with the surgery. We are kind of stuck between a rock and a hard place because there are risks if we don't have the surgery, as well as if we do. The doctors here feel Taylor is stable and is strong enough to endure the surgery. However, we are still a little nervous. As of right now, we still don't have the exact date of the surgery. However, we are scheduled to leave Pitt late this week and have the surgery some time early next week. Then we will be coming back to Pitt for a few more days of rehab.

Some good news, is that our wonderful case worker has found us a physical therapist that will come to our house to work with Taylor. She lives in our area and is a wonderful person. We also found out that Taylor should qualify for Cap/C. This stands for Community Alternatives Program for Children. It is a type of Medicaid that will help cover cost for in-home nursing and medications. This is all dependant upon the assessment they do of Taylor when we take her home. Then, we have to wait 30 to 45 days while they determine how much help she can get. Our case worker said we should qualify no problem because Taylor has already been deemed disabled. Hopefully, Taylor will qualify for Cap/C because our private insurance will not help cover the cost for in-home nursing. I guess having a severe heart, brain damage, and on 10 different medications isn't enough to qualify for a little help.......go figure.....

We got to bring Taylor home for the day again on Sunday. This time, it went much better!!! She didn't throw up at all and the boys were much better with her. The five of us sat down for dinner together for the first time in 13 weeks. As we were clearing the table we noticed Tate was pretty much lying on top of Taylor trying to kiss her. How SWEET and SCARY at the same time. It is still going to be a huge transition when we take her home for good, but boy are we ready for that day!!! Well, that's about it. We should have an eventful next 2 weeks. I will try and keep you more updated with the surgery. Keep praying for baby girl! We love and appreciate you always!

Tammy
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God Bless the little things...
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