Thursday, Nov 12

Here's a little update for the blog to let everyone know how Taylor's doing.....

Tuesday, Taylor woke up with a temp of 102.4 and she sounded terrible. I took her to her pediatrician and they sent her to Onslow Memorial Hospital to get blood and urine cultures, as well as, chest x-rays and an RSV test. Everything came back normal and the doctor felt like Taylor had a viral infection. At first he said he thought Taylor had the flu, but when we checked out the nurse said she had Bronchiolitis. So, I'm really not 100% sure what she has. They gave her a shot of rocephin to kill any bacteria infection that she might have. The last two nights Taylor has slept great (with the help of a little oxygen). It is obvious that Taylor has A LOT of congestion that requires breathing treatments to break up the gunk and needs closer monitoring. Hopefully, in a few days she will look and sound a TON better.

I am also very happy to report that Taylor has been doing a fabulous job finding her voice. She's yelling, crying, and cooing at us. It is beautiful music to our ears!!! She is also SMILING without being prompted by a seizure. Before she would only smile after a seizure. She is also turning her head towards the right and making more eye contact. Yesterday, I came in the room and said, "Hey Taylor" and she turned towards me and smiled such a big girl smile. I know in my heart, she heard, saw, and understood that was mommy talking to her.....

We are so thankful for our small blessings! ~

Tammy

God Bless

~

Thursday, October 29

Hello all! I would think by now, life would be easier and slow down a little bit. However, with 3 children under 4 years old I think that might be impossible!!! :-) Little Miss Taylor is growing more and more everyday! Her hair is so beautiful and getting so long. Pretty soon her hair will be long enough to put a pony tail in it!

She continues to have PT and OT weekly and has her good days and bad days. On a good note Taylor is getting much more comfortable tolerating tummy time and vocalizing when she is hungry, wants to be held, or is in any type of pain. Before the only time she would cry out was when she was in pain. When we prop her up on a boppy, she turns her head from side to side looking around the room. Most of the time, Taylor keeps her head locked towards the left, so we really try and get her to turns towards her right.

On a more frustrating note, Taylor continues to have many seizures a day despite the increase in her medication. I have been in contact with her neurologist at Duke and they want to continue with the path she is on now and see what happens. She goes back to Duke on November 25th and hopefully we can get some more answers. We also finally got the results from Taylor's swallow study from July 23rd. It was a bit complicating, as it said Taylor had no swallow reflex. It also said she was at an extremely high risk of aspirating. That really puts us in a uncomfortable situation because as much as we want her to slowly eat by mouth, all it takes is for her to aspirate on her food one time and she could catch phenomena. Her heart might not be able to take that type of stress. Our OT said she would continue to work with oral motor, but would not work with the feeding side of things until she has a swallow reflux.

Meanwhile, we haven't had Speech Therapy in about 6 weeks because our therapist moved and we haven't been able to find anyone else. I am in the process now of trying to find a speech therapist that deals with pediatric swallowing and will feel comfortable working with Taylor and her heart condition. As a mother, I want Taylor to one day eat by mouth again, but I don't want to rush it and put her in further danger. Please pray, that the Lord will guide me to do the right thing and that HIS will, will be done.

Another, concern is the tightness in Taylor's upper body. For so long, Taylor would hardly bend her arms and would sometimes turn them outwards. She has quit doing that, but now keeps them bent and drawn in. It is very hard to straighten her arms unless she is sleeping and she completely relaxed. Jeff and I, along with her nurses stretch her arms really well when she is napping. Every now and then, Taylor raises her hand and our nurses think she has a question. We tell her, "YES, Taylor....you can have anything you want!"

The Cap-C program are currently reviewing Taylor's medical documentation to see if she still requires a Nurses care. They have extended her nursing care until November 16th in order to make a decision. Our Case Worker said she has not found a company that would allow their CNA's to take care of Taylor in her condition. So, if they say Taylor does not rate a nurse, they will have to, by law, provide a company for her. I'm hoping that with her documentation we will not need to put up another fight.

That's about it for now. I hope everyone is having a great October and Flu-Free!!!

Love ya'll!

Tammy

God Bless
~

Thursday, October 15 (Guest Blogger)

My son Tim asked me if I would write an entry for the blog. We know that many people check the blog frequently, looking for news about Taylor and her progress. It is understandable that Tammy and Jeff are very busy. Both are back at work, and when they are home, their time is consumed by Taylor's needs, as well as the needs of their very active boys. Dick and I have just returned from four days in North Carolina, so I am happy to share an update on our Taylor.

We were delighted and thankful to learn that the initial report from an evaluator for The Governor Morehead School for the Blind recommended that Taylor should receive services from a teacher of the visually impaired one time per month for one hour visits in her home. While Taylor is considered to be legally blind, (diagnosed as Cortical Visual Impairment) it was noted that when Taylor is awake and alert, her eyes move together almost as if she is attempting to focus. She also will turn her head in the direction of voices as if she is attempting to see who is talking. She seems to particularly respond to voices that are familiar to her.

According to the evaluator, "vision is best improved when it is enhanced and stimulated." In other words, a child with a visual impairment must be taught to "use" whatever vision she might have. It is hoped that Taylor can become more actively engaged in her daily routines. The vision therapist will work on this, as well as give Tammy and Jeff and her nurses things to work on with Taylor. While Taylor has not had a recent vision test through Duke for some time, it would be such a blessing if she were able to see more than was originally predicted. The healing process is ongoing, and God's time is not our time. If there is one thing we have learned through this past year, it is that patience is a necessity. We pray for Taylor every night, and we believe that many people are still praying for Taylor, too. The power of prayer can be an awesome thing.

We got to see the physical therapist work with Taylor on Friday morning before we left with the boys for a pumpkin patch and Chuckie Cheese. Taylor was responding well. They are concerned about her tendency to always want to turn her head to the left. The therapist was working to relax her muscles and get her to turn her head voluntarily to the right. Tammy and Jeff are working on this, too.

Another concern is the number of seizures that Taylor has each day. Despite the increase in her seizure medicine, she seems to still have multiple seizures. They only last seconds, but it is very apparant when one occurs. She will jerk involuntarily and her eyes will roll back. When it is over she always seems to smile. Next month, she will be evaluated again at Duke Medical Center. Perhaps they will have some answers. Again, we pray for her healing to continue.

On a positive note, the hyperbaric oxygen chamber has arrived! It is a huge apparatus that takes up one whole wall of Taylor's room. It is another blessing that the many contributions given for Taylor's benefit allowed Jeff and Tammy to purchase this. It allows Taylor to continue the treatment that was recommended without driving four hours round trip to the nearest facility, something that would not be possible with school underway. They are using the oxygen chamber five times a week for one hour sessions each time. A parent has to be with Taylor in the chamber. It is somewhat claustrophobic, and so far, Tammy is more comfortable with it than Jeff. Someone on the outside has to turn it off and unzip it when the session is finished. They usually wait until the boys are in bed at night to use the chamber. Taylor is usually asleep at this time, so she doesn't seem bothered by it. It will be some time before they can evaluate the effect this might have on Taylor's progress.

Finally, I wanted to share how heartwarming it is to see the love that surrounds little Taylor. She has two wonderful nurses who are part of her daily care throughout the work week. We only got to meet one of her nurses, but we know through Tammy and Jeff that both nurses are outstanding in their care and concern for Taylor. The boys give Taylor hugs and kisses a lot, and both Jeff and Tammy hold her and interact with her frequently, especially on the weekends. If love has any healing power at all, Taylor surely can feel its warmth.

Thank you all again for your continued prayers...May God keep you in HIS care, and may HE continue to watch over Taylor and her family.

Donna Whitehead (Jeff's mom)

God Bless
~

Saturday, September 12

Can you believe our little angel turned one yesterday? Nine months ago, we didn't know if we would be celebrating this day.... However, by God's Grace and Taylor's fighting spirit, we have so much to be thankful for. Happy Birthday to our precious girl!

Last Friday, we met with Mrs. Rollings from The Governor of Morehead School of the Blind. It was mostly filling out paper work and getting the ball rolling so Taylor will start to have vision therapy. She gave us some strategies to practice in order to hopefully help Taylor regain her vision. Mrs. Rollings will evaluate Taylor on September 21st and the 28th. Jeff and I are very excited and hopeful that Taylor's vision will continue to improve.

Taylor's neurologist has increased her seizure medicine topomax quite a bit over the last month. The hope is to have 2 or less per day. Right now, she probably has between 6-12 per day. Most of these are a quick startle. However, she continues to have a couple of the 10 second convulsive type seizures per day. It's never a comfortable feeling when she has those types of seizures......Please continue to pray that the increase in medication will eventually knock out these seizures all together!

That's about it for now... Love you all...

Tammy

God Bless
~

Sunday, August 23

Here's the latest on Taylor.....

Hello all! Lots are happening in the Whitehead house! Taylor has seen the cardiologist, neurologist, gastrointestinal doctor, had a swallow study, and also had a 6 hour EEG performed on her in the last 6 weeks. Tanner turned 4 yesterday...and Jeff and I started back work on Monday!!!

At her visit with the cardiologist, Taylor had an echo that showed slight improvement. Her numbers were up from 35% to 41%. She doesn't see the cardiologist again until mid November. Taylor also traveled to Duke to see the GI doctor and the neurologist. The GI doctor changed her barb button to a Mickey button. She was very sore for a couple of weeks, but now her tummy is finally starting to heal.

During her visit with the neurologist, she had multiple seizures so they set up a 6 hour EEG to determine what kind they are. We went back and had the EEG and they determined that it was abnormal and she is having seizure activity called Infantile Spasms. So, they increased one of her seizure medications(topomax). She continues to have seizures, however they have decreased.

During her swallow study, Taylor was able to swallow the thicker liquids (such as the level 2 baby foods), but aspirated the fine liquids. They gave us the green light on trying to feed very small amounts of baby food. She typically takes between 6-12mls of baby food per day. She does not initiate eating by opening her mouth so we use a small syringe to put the food on the back of her tongue. You can definitely tell she moves it around with her tongue and she is swallowing it. We will continue to take baby steps and hopefully see progress overtime!

After a lot of notes from our doctors and documentation on our end, CAP-C decided to give Taylor back her nursing for a two month trial basis! We have them 5 days a week 10 hours a day. THANK the LORD!! They will look at her nursing notes again in early October to determine if she can keep her nursing or be given back a CNAII. This has been a big hassle trying to figure out who can best take care of Taylor. Personally, Jeff and I would much rather have the nurses we have now. They really do a phenomenal job stretching her and giving her lots of cuddling time. They are on the ball and constantly assessing her needs.

Well, that's it in a nutshell! Jeff and I are back at work and look forward to the year ahead! Thanks for continuing to pray!

Love,

Tammy

God Bless

~

Wednesday, August 12 - Message from Jeff

Saturday was a smashing success. We are all amazed by the love, support, and Prayers that Taylor continues to receive.

Below is a message sent by Jeff... We cannot thank you all enough for your support. God Bless.

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Words cannot properly describe the gratitude my family feels toward all of you who worked so hard to make the Taylor Whitehead benefit a success, and to all of those who participated and donated so that Tammy and I can best take care of our baby girl. Your efforts and contributions have made it possible for Tammy and me to leave "no stone unturned" in regard to getting our baby girl better. You all have given Taylor a chance at a better life. We are truly humbled and have been lifted by the love and kindness we have received. It is not enough to "thank you", but on behalf of my wife Tammy, my boys Tanner and Tate, I, and most importantly Taylor, I say THANK YOU! Your love, support, and prayers mean the world to us.

Taylor is a miracle child. The doctors were amazed that she survived her collapse when they realized how sick her heart was, and how long she went without sufficient oxygen. It is a miracle that she is now home, breathing on her own. She still has a long road ahead. Her heart is still very sick; she is still being fed through a G-Tube. Furthermore, she still suffers from the brain injury she received when she went without oxygen for so long. But she smiles everyday! She is starting to taste food on an occasional basis (in very small amounts) for the first time. Her latest heart ejection fracture is 41%, up from 35% on May 29th. God is good, keep the prayers coming!

Even though this has been a very difficult time for my family, there have been so many blessings that have taken place over the past several months. Taylor has brought so many people together in prayer and fellowship. Her life has glorified God, and is a testament to the power of prayer and of God's love and mercy. My family has been strengthened from this experience. We have a new perspective on life, and will never again go another day without thanking God for the many gifts we have received. Our relationship with God has strengthened, and as a result every aspect of our lives has been reinforced as well. Tanner and Tate will grow up knowing the true meaning of perseverance after having been witness to Taylor. Personally, my love, respect, and admiration for my wife has never been stronger, and my appreciation for family and friends has never run deeper. Thank you God for blessing us with Taylor’s life, and for blessing us with such wonderful family and friends. Thank you all for answering our prayers.

In the name of Jesus we pray: heal her heart, mend her mind, and restore her body. Amen.

Love,

Jeff, Tammy, Tanner, Tate, and Taylor

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~
God Bless

Thursday, July 30 - Taylor Whitehead Benefit

Taylor Whitehead Benefit

Saturday, August 8th

Rolling Acres Golf Course, Center Point IA 52213

4 Person Best Shot Tournament starts at 12:00

$40 per player ~ Flighted Prizes

Sorry, the golf tournament filled up fast
and we are no longer accepting teams.
However, please join us for other activities.

After the golf tournament, please join us for additional activities:

Silent Auction 4:00-8:00

Flat screen TV, Autographed Hawkeye and Iowa State Prints,

3 day-2 nights at Hooters hotel in Las Vegas,

Hawkeye rock and many more.

Photos of several items shown below. More items to come!

BBQ pork Dinner-($6 per person) 5:00-8:00

Karaoke/DJ with Jake's Jukebox starts at 8:30

If you are unable to attend and wish to contribute in some way,

we have set up an account at Center Point Bank and Trust:

Taylor Whitehead Benefit Fund

901 Bank Ct Center Point, IA 52213

As you can see from the photos of some of the auction items that have been donated below; we are truly blessed by the people that the Lord has brought into our lives! We can not thank you all enough!

OK, the blog is acting funny, I uploaded 45 photos and they were showing up but now they are not. I will have to load them again and its getting late, so I will get them out here later. -t

~

God Bless

Thursday, July 16

I have an update from Tammy with some pics from a family vacation. But first... For those of you in the Iowa area. Mark August 8th on the calendar. We will be having a benefit for Taylor at the golf course in Center Point. Details to come. Also, we still have Pray For Taylor t-shirt available. See the order form in the previous post. All proceeds go towards Taylor's care.

And above all else... Please continue to Pray for Taylor and her family. With God, all things are possible. God Bless.

- t

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Hello everyone,

It's been a while!!! Taylor is continuing to take baby steps. Since my last entry, Taylor has completed 11 sessions in the hyperbaric oxygen chamber. Jeff and I have noticed Taylor has started making more cooing noises and has cried 3 times now. Personally, I feel the oxygen therapy is working. However, I am trying to stay low key until she has completed all 40 sessions. Currently, Taylor is not going to Wilmington anymore for the sessions. We found out that the longer you go, the more results you see. Looks like, after 40 sessions she would need to take a 3 week break and then do 40 more. Because I will be going back to work in August and the aggravation of trying to travel to Wilmington 3 to 4 times a week, Jeff and I have decided to purchase the HBOT. I know we're taking a huge leap of faith, but I really think this is helping her. We are not expecting an overnight change. But, in my opinion anything that can help Taylor is well worth all the money in the world!!!

Friday, we will travel to Duke for neurology. We are hoping to get another EEG, because Taylor is starting to show signs of having more seizures. She has had 5 seizures that have lasted about 4-5 seconds and 1 that lasted about 20 seconds. We are also hoping to schedule another MRI. We were very disappointed with the neurologist in Greenville, as our last conversation was over the phone in January, in which the doctor told me she thought Taylor's biggest problem would be her vision. Obviously, Taylor has a lot more issues than her vision.

Taylor also has an appointment on the 23rd of this month at the feeding clinic in Greenville. I am hoping they will do another swallow study to see how she can tolerate thin vs. thick liquids. Taylor has had nothing by mouth since we left the hospital in April.

Our nursing hours have been down graded to 4 hours a day, 5 days a week. We also went from a LPN to a CNA. We were very disappointed to lose our awesome nurses we had developed a relationship with. They were great with Taylor and also getting used to our naked boys always running through the house! We have sent 3 letters from our doctors to our case worker explaining why Taylor needs a LPN vs. a CNA, and are awaiting their decision. Although, the CNA's that have been in our home are very nice and good with Taylor, they are not allowed to give any medication via G-Tube and are not allowed to make judgment calls like, giving oxygen or suctioning when needed. Taylor has a strict medication schedule and if we don't get our nursing requirements changed we are in trouble!!!

This experience that has just begun for us and has been so life changing. We all have our weak and strong moments and learn more and more about the system everyday! Please continue to pray for Taylor and for Jeff and me to continue to have strength to rely on each other. Thanks for everything!

Much love,

Tammy

God Bless
~

Now Available!

(Front Logo)

pray for taylor t-shirts now on sale!

As a fundraiser activity for the Taylor Whitehead Fund, we have ordered our first production of the "pray for taylor" t-shirts! To reduce production costs, the initial offering will be White shirts only in the following sizes: Child Medium, Adult Medium, Adult Large, and Adult XL. If we have enough interest in a different size we will look to expand. Cost is $15 (s/h included).

(Back Logo)

To place your order today, please download and complete the attached form:

Pray for Taylor

Publish at Scribd or explore others: Brochures & Catalogs pray for taylor shir

All Proceeds go to the Taylor Whitehead Fund to help cover medical and various other costs associated with Taylor's recovery.

God Bless

~

June 04, 2009

Update from Tammy

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Taylor has had several appointments since I last updated. Friday, Taylor met with her cardiologist and had another echo performed on her heart. Dr.Hannon felt her heart was still unchanged. She has also seen her pediatrician because of an infection to her G-Tube. We are treating it with silver nitrate and zinc oxide; however it is taking a while to heal.

Today we took Taylor to a neurodevelopment specialist. She was very nice and gave us a few avenues to pursue. One type of treatment she felt would be beneficial and successful for Taylor would be mild hyperbaric oxygen therapy. She said she has seen a lot of success with children with hypoxic brain injuries with this type of treatment. Of course, there are no guarantees but she seemed very hopeful. Taylor had her first treatment today. It lasts one hour and I had to go in there with her. Assuming everything goes well, Taylor will have forty treatments. Around 3 per week...

I'm sure you're asking yourselves, "What is hyperbaric oxygen therapy?" This is an explanation from Dr. Harum's pamphlet...

Hyperbaric oxygen therapy (HBOT) has been used successfully to treat many medical disorders, including brain disorders in children. HBOT is approved by the FDA and acts by enhancing tissue levels of oxygen. Normally, oxygen is carried by the red blood cells alone. Under conditions of increased partial pressure of oxygen, as during HBOT therapy, there is a significant increase in the oxygen delivered to all body fluids, including plasma, intracellular fluids, lymphatic fluids and spinal fluid. This boost of oxygen delivery promotes the growth of new blood vessels, and increases metabolic activity of marginally functioning cells, including damaged brain cells. Many traditional clinical applications use pressures over 2.0 atmospheres (ATA) for treatment of decompression sickness (the bends), arterial gas embolism, carbon monoxide poisoning, amyotrophic lateral sclerosis, and complex regional pain syndrome. At lower pressures (1.3 - 1.5 ATA), however, clinical success has been reported in the treatment of fetal alcohol syndrome, ischemic brain injury and cerebral palsy, and closed head trauma. We call this mild HBOT.

The only negatives are the cost of treatment and driving to Wilmington 3 times a week. Unfortunately, insurance does not cover this type of treatment. However, because of the generosity of our loved ones, we will be able to pay for all 40 treatments in full! So, once again....THANK YOU to everyone for helping us take care of our little princess!!! It's another reminder that God provides!!!

Tomorrow, Taylor will travel to Greenville for 2 doctor appointments. The first one is a check up at the C-5 clinic, followed by an appointment with her Rehab doctor. Looks like another long day, but you do what you gotta do. :->

Please continue to pray for Taylor's healing and our safety as we travel for her appointments. Sending our love!

Tammy

God Bless

~

Thursday, May 14

Update and pics from Tammy...

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Sorry, I haven't updated on little Miss in a while.  Saying we have been busy is an understatement!!!  We have had so many different people in the home to do an assessment on Taylor, as well has a handful of appointments!  Yesterday, Taylor had two appointments in Greenville.  Unfortunately, because she has had two UTI's in the past 7 weeks the doctors ordered a procedure called a urethra gram.  This was a simple procedure to make sure her kidneys were functioning properly.  Everything looked good, so we can rule out a kidney problem.  Her second appointment was at a specialty pediatric clinic.  Basically the doctors there will work together with our local pediatrician and help us make sure we are getting the services Taylor needs.

 

So far, our private duty nursing has been great!  We have had three different nurses come into our home.  They all have different personalities, but they are all awesome!  They do such a wonderful job taking care of Taylor.  They hold her, stretch her, sing to her, and most of all love on her!  We are very blessed to have such caring individuals taking care of our princess!  Hopefully, we will be able to keep them!  As of last week, our insurance was trying to reduce our hours to 4 per day and then when Jeff is out of school for the summer they are looking to pull all the hours all together.  This is another frustrating part of her recovery.  Anyone that comes into our home can see the whole picture to why we need help.  However, when you're only looking at a piece of paper with a diagnosis of a 8 month old everything is not so clear.  I honestly, only hold Taylor for about 10 minutes while our nurse is here.  The boys are ALL over mommy!  It feels so incredibly great being home, but it is also more draining trying to juggle LIFE!  

 

Taylor started OT today.  Her therapist seems so nice and had some great advice about additional therapies Taylor could be receiving.  One in which is a vision therapist.  We had never even heard of this while in rehab.  PT will start on Saturday.  She will receive each service twice a week. 

 

I have the ringbone on my phone, "It won't be like this for long" by Darius Rucker.  Every time my phone rings, it reminds me that times may be tough right now, but eventually Taylor will get better.  I keep holding on to that!  Thank you to everyone who continues to lift Taylor and the rest of our family up in prayer!  You guys are the best!

 

Much love,

Tammy

 God Bless

~

Happy Birthday Tammy

Just wanted to wish Tammy a happy birthday. You are an amazing women, one of the strongest spirits that I know. May your birthday be blessed with simple pleasures, love, and happiness.

God Bless

~

Monday, May 4

Just a quick note... Taylor was able to come back home on Thursday. On Friday, their in-house nurse started and she has been a great fit, the entire family loves her!

God Bless
~

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...
~

Tuesday, March 31

The past week has been a little frustrating. Taylor continues to have problems keeping food down. Over the last week, Taylor has gone from throwing up once a day to two and even three times a day. The doctors tried to do a gastric emptying study (Definition at bottom) on Thursday to get answers to why she continues to get sick. Basically, they stopped her feeds at 9:30am and didn't feed her until 4pm. Then, they gave her a little over 3 ounces over a 15 minute time period. We argued that it was too much food over a short period of time; however the doctor said this is how they had to do it. After she ate, she was supposed to lye still for 2 hours while a machine took pictures of her stomach every fifteen minutes. Forty-five minutes into the study, she vomited so they had to quit. Because, they could not complete the study it was in-valid. They have opted not to try this again, because they feel she will have the same results.

Friday, Taylor underwent another swallow study to see if the baby food they were trying to give to her by mouth was going into her stomach or into her lungs. This study went much better than the first study they tried 3 weeks ago. During the first study, she wouldn't even keep the food in her mouth. This time, she took it and swallowed it. The study showed that the thicker substance they gave her, which was honey thick, went down correctly to her stomach. However, the fine liquids such as apple juice and water went to her lungs. Taylor coughed and turned red and they said that was a good sign, because at least she realized that it went down the wrong pipe. So, now at least we know where to start and what is going where.

As of today, insurance is still up in the air as to if they will continue to cover another week. Our doctor was supposed to have a phone conference this afternoon to discuss the feeding plan. Our cardiologist sent Taylor's echo back to Duke to see if they would re-consider the G-Tube surgery. Everyone here feels we should go ahead with the G-Tube surgery if Duke accepts her. Evidentially, there is a procedure with the surgery where they can wrap her stomach so she would not be able to throw up. Insurance is also saying Taylor does not rate In-Home Nursing when we take her home. Jeff and I were disappointed because we were hoping we would be able to get a little help when we took her home. We got a little taste of what life would be like this past Sunday with her and the boys... and it is not going to be easy!

We took Taylor home Sunday morning for the day and it was an EXPERIENCE! Although, it felt GREAT to be home with her and the boys, it was also nerve racking! Taylor threw up two out of three meals and the boys were fighting for attention every step of the way. Tate kept trying to climb the outside of her crib. He was very excited to see her and kept yelling b-a-b-y! I think the atmosphere was too loud because Taylor seemed a little fussier than normal. It was good we were able to take Taylor home for the day. This allowed us to get some things figured out before her next visit home...

Well, that's about it for now. Please continue to pray for Taylor's healing. We love you guys! Tammy
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http://www.medicinenet.com/gastric_emptying_study/article.htm
What is a gastric emptying study?

A gastric emptying study is a procedure that is done by nuclear medicine physicians using radioactive chemicals that measures the speed with which food empties from the stomach and enters the small intestine. Gastric emptying studies are used for testing patients who are having symptoms that may be due to slow and, less commonly, rapid emptying of the stomach. The symptoms of slow emptying are primarily nausea, vomiting, and abdominal fullness after eating. The symptoms of rapid emptying are diarrhea, weakness or light-headedness after eating after eating.

How is a gastric emptying study done?

For a gastric emptying study, a patient eats a meal in which a solid component of the meal (for example, scrambled egg), a liquid component of the meal (for example, water), or both, are mixed with a small amount of radioactive material. A scanner (acting like a Geiger counter) is placed over the patient's stomach to monitor the amount of radioactivity in the stomach for several hours after the test meal is eaten. As the radioactively-labelled food empties from the stomach, the amount of radioactivity in the stomach decreases. The rate at which the radioactivity leaves the stomach reflects the rate at which food is emptying from the stomach
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God Bless

~

Monday, March 23

I’ve combined the last two updates from Tammy below. We continue to be thankful for the gifts the Lord is providing. Taylor has been blessed with excellent therapists and loving family and friends. We continue to pray for her heart, mind, and body to make a full recovery.

Update on Friday - 2/20

Taylor is still hanging in there. Last weekend, when she was dehydrated and they did two urine samples to make sure she didn't have an infection. Wouldn't you know, they both came back positive for a UTI. They started her on an antibiotic on Wednesday and she has had a little bit of diarrhea. Today has been a little uncomfortable for her. I think she has a tummy ache, as well as a little bit of congestion. When she's sleeping, she's very peaceful, but when she's awake she seems very tense and irritated. She got her last dose of Septra (the antibiotic for her UTI) at 1, so maybe she will start to feel better.

We have had a little bit of success with Vital Stem this week. On Wednesday, Taylor sucked 25 times. Her speech therapist about feel out! Taylor was almost asleep and very relaxed and just started sucking away. The next day she sucked again, but only 8 times. It's still hard to catch her at the right time because it is so vital to keep her meds and food down. She has spit up 3 times today already... We just keep praying that she will regain the strength in her cheeks and neck in order to keep progressing with her suck/swallow reflex. Insurance granted Taylor another week of Rehab and want to discuss future plans with her NG tube vs. a G-Tube at our next meeting on Monday. I'm really not sure Duke will reconsider putting in a G-Tube because Taylor's heart is not any better than it was when we were there 3 weeks ago. Her last Echo on the 16th was unchanged from two weeks prior.

Please pray that Taylor's heart will be healed. I know it's a long process, but it just seems that we've hit a wall with the healing of her heart.

Taylor also got a roommate late last night. He's a cute little two year old boy who grinds his teeth constantly and snores like an adult... wish us luck!!! :-) I still can't believe we've been in the hospital 11 weeks. I can tell you this; we are SICK of eating cafeteria food... Soon... we'll be home and be eating frozen pizza and Hamburger Helper again... as a family!!!


Update – Monday March 23, 2009

We had another care conference this morning, and this is what's going on...

Taylor is continuing to excel in all of her therapies. The vital stem technique they are using to stimulate her cheeks and throat muscles really seems to help. It is triggering her to suck more. Her speech therapist has seen improvement just in the last week. With the help of vital stem she is sucking between 10 to 20 times per session. Her therapist said, to be able to keep this going she would need to have this stimulation at least 3 days a week. Unfortunately, we found out this morning that there are NO therapists in the Jacksonville area that are certified to use vital stem. We've asked if we could get a prescription and purchase one of these miracle machines, but you have to be a licensed professional to get one. So, they are trying to locate someone close to our home that we could follow up with. If we have to, we will be driving 3 days a week back to Greenville.

Taylor continues to have issues with eating. She throws up at least once a day and this really concerns the doctors. They haven't been able to figure out WHY? They have changed her formula twice and her calorie count countless times, but still no real solution. Sometimes, Taylor will cough, and then gag, then up it comes. Then sometimes, nothing will trigger her. She'll be lying peacefully and start throwing up. It continues to make it difficult for the therapist to be too aggressive with her therapies. Regardless, they are doing an outstanding job with Taylor. They really are a special group of people who really care about their patients.

Taylor's last echo they did from last Monday showed no improvement. Not any worse, but not any better. Her cardiologist was going to consult Duke again to see if they would reconsider doing the G-Tube surgery. We haven't heard anything back from them, but I'm guessing she's still not ready.

Tanner came to Greenville with me last Tuesday to see his baby sister. He spent the night with me at the RMH and stayed most of the day Wednesday before Angela took him home. He did a wonderful job loving on his sister. The last two weeks has been hard on Tanner. He's having mommy withdrawal... Tate on the other hand is a total daddy's boy. Even when I'm home he walks around the house yelling for daddy! Pretty soon we will all be sleeping under the same roof... Looks like we're on a three week count down! In fact, this weekend we are allowed to take Taylor home for a one day trial run. This will allow us to find out what it is like with her at home to see if there is anything we need to do different before we actually take her home for "good." We will also get some good quality "family" time in. The five of us haven't been together since January 2nd. Can't wait!!!

God Bless
~

Monday, March 16

We have had an interesting weekend. Friday, Taylor started spitting up more than usual. She got a little worse as the weekend progressed. The doctors stopped her feeds on Sunday around noon and started her on a IV drip. They were worried that she was dehydrated because she didn't have the urine output that she should have had. They were contemplating sending her to either ICU or to the Ped's floor. Thankfully, she starting peeing and stopped spitting up! Thank God for pee!!!

Saturday, one of the nurses told Jeff that our insurance company was questioning if Taylor needed to continue therapy. It's amazing how much you have to fight for your child when they're in the hospital? Evidentially, our insurance company only approved Taylor for two weeks of in-patient rehab so they were expecting us to go home this Wednesday. Thankfully, we have a wonderful case worker going to bat for us with our insurance company. She said, it is normal for private insurance to "question" if a child needs to be in rehab. For now, Taylor will definitely be here through the 19th. Then our case worker will be back on the phone trying to get Taylor approved for at least one more week. She said they only approve 7 days at a time. There are no guarantee's, however because Taylor is making progress and they have proper documentation, hopefully our insurance company will not deny her.

Taylor's cardiologist, Dr. Hannon, also stopped in this morning to perform another echo. He didn't have the specifics, but from looking at her heart on the screen he felt it looked about the same from the echo they performed two weeks ago. He said the ejection fracture was around 32%, but not to get too carried away in the numbers because depending on the angle the numbers can vary. He still feels confident that Taylor will improve over time.

Jeff and I still have a steady stream of visitors. Our pastor has been up to see Taylor more times than I can count. It just means so much to us to know so many people care... Our church, our friends and family, and our community have been phenomenal!!! The love and support we receive daily is just AMAZING! To read the comments from my students at SWMS makes me so proud! Over the last couple of weeks, my kids at school have had a "hat day" and a "student vs. faculty basketball game" fundraiser in honor of Taylor. SWES also had their kids participate in a "hat day" fundraiser. We continue to be in AWE of how unbelievably generous everyone has been to us.

Taylor also received a ton of get well cards from Cole's kindergarten class (one of Taylor's Iowa cousins) as well as Bethany Baptist Children's Church. It's just an overwhelming feeling when you're reading a card from a 6 year old that says, "hang in there Taylor....God is going to heal you soon." Jeff and I want you all to know that everyone's prayers, love, and support has gotten us through the last incredibly difficult 10 weeks. We love and appreciate you all very much! We just hope we can pay it forward one day!!! Love you all!

Tammy

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Side Note:
According to the MayoClinic.com…
Ejection fraction is a measurement of the capacity at which your heart is pumping.
During each heartbeat cycle, the heart contracts and relaxes. When your heart contracts, it ejects blood from the two pumping chambers (ventricles). When your heart relaxes, the ventricles refill with blood. No matter how forceful the contraction, it doesn't empty all of the blood out of a ventricle. The term "ejection fraction" refers to the percentage of blood that's pumped out of a filled ventricle with each heartbeat.

Because the left ventricle is the heart's main pumping chamber, ejection fraction is usually measured only in the left ventricle (LV). A normal LV ejection fraction is 55 to 70 percent. The ejection fraction may decrease if your heart has been damaged by a heart attack or other problems with the heart valves or muscle.

God Bless
~

Thursday, March 12

OK, although I’m posting this on Sunday, I’ve titled it as a Thursday post as that was when Tammy sent this info. Sorry, hectic week in the office…

Tammy talks a little bit about Taylor not holding her formula down. Apparently this has continued into the weekend and they have placed an IV. I will hopefully get more details tomorrow. We are confident the power of Prayer and the love of Christ will continue to blast through these obstacles.

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Taylor turned 6 months old yesterday (Wednesday). I had a piece of cheese cake from the cafeteria in her honor! I still can't believe we've been in the hospital for the past 10 WEEKS! Therapy is still going well and she is making progress. However, it gets frustrating because the therapist can't be as aggressive as they would like because they are working around her feeding and medication schedule. Nutrition and medication are a higher priority than her rehab. Unfortunately, Taylor is not keeping her milk down as well as she did when she was at Duke. When we were at Duke she was eating 4 ounces every 3 hours over a 30 minute time frame. After the transfer, Taylor threw up a couple of times, so they slowed down her feeding to 2 ounces over a 1 hour time frame. It has taken 2 weeks to bring her back up to 3 ounces. Then, Taylor threw up twice yesterday and once today, so she is back down to 2 ounces. I don't think it is so much acid reflux, she just starts to cough and then gags and then up comes her milk. Her therapists try to schedule her sessions around her meds and feedings, but sometimes it just doesn't work out so great. Speech is very hesitant to be aggressive stimulating her mouth because she is afraid that she is going to start gagging. I just pray that Taylor will be able keep her food down so they can eventually feed her a higher volume over a shorter period of time. That would allow the therapist to be more aggressive...

Jeff had to take a half day today to take Tate to the doctor. He has a double ear infection and a sinus infection. Hopefully, since he is on antibiotics he will start to feel better. Tanner is doing great and becoming a master at playing the Wii. He also knows all the words to the theme song Power Rangers.....thanks Tim! Well, I better run. Love you guys!

Tammy
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God Bless
~

Tuesday,

A little recap of what's going on with Taylor. We had another Care Conference on Monday. All of her therapist said they feel she is making great progress. They feel she will definitely benefit to stay here for the next 4 to 5 weeks as estimated. Since, she was on a "two week" trial basis, they have to call our insurance back and make sure everything is good on their end. Our case worker doesn't feel that will be a problem... Her Speech Therapist started a new oral stimulation called Vital Stem. Basically, they place electrodes on her cheeks and throat to help stimulate the muscles in her face in order to help with her suck and swallow reflex... Her cardiologist also stopped by to tell us that they would be performing another echo on Monday. He also increased one of her heart medicines. He commented on how well Taylor looks and expects her to show slow, but gradual progress... Slow and Steady, just like the turtle Papa gave her!

Tammy

God Bless
~

Sunday, March 8

Recap of the weekend from Tammy with some pics.

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Life is good! Both the boys got to see Taylor on Friday and Saturday! Thankfully, because the weather is so nice in NC, we were able to spend time together as a family. We took the boys outside to the huge playground connected to the rehab facility and had a picnic. We even took Taylor with us! Tate is going to be the one to watch. He kept trying to climb the crib because he wanted to get as close as he could to her. It was nice to see the boys with her... Taylor had one therapy session yesterday and none today. I'm sure she was happy she was going to get a little break... that is, until her daddy got a hold of her!!! When I got to Greenville today, Jeff had made his own schedule of when Taylor was to have her different sessions along with her "notes" of the day. He just cracks me up!!! He had documented every little thing with Taylor... So, if you want to know what Taylor did at 9:55am, she tried to focus on a red and white spotted ball. At 10:30 she tried to smile... the list goes on and on. Don't get me wrong, I am not complaining... Jeff doesn't have a lazy bone in his body and that's a great thing! Well, I better run. Taylor and I are going to take a tour of the hospital in her shinny red Cadillac...aka...red wagon!

Tammy

God Bless

~

Thursday, March 5

Taylor continues to do well in therapy. An Ear/Throat/Nose specialist examined Taylor today. They were a little concerned that her vocal cords have been damaged, but the report is that her vocal cords are in excellent condition!

Tammy posted this video today... While Taylor still has a long road to recovery, it really shows the progress she has made! The Lord has shown us his greatness so many times and continues to cover Taylor with blessings. It seems like the world stopped when she entered the hospital on January 4th, it's hard to believe Taylor will be 6 months old next week! Enjoy the video, and keep joining us as we thank God for his glorious blessings and continue to pray for a full recovery.

God Bless
~

Wednesday, March 4

I got some emails from Donna (Jeff’s Mom) with some recent developments with Taylor. I am so happy for them all! The Lord is my shepherd; I shall not want...

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Tammy just called on her way back to Greenville. She had some good news... she will probably email with it later, but I can't wait to share it with everyone. I had to call Dad at work and interrupt a meeting... Jeff had called her to tell her that they did another hearing test on Taylor. This time it showed that BOTH ears were responding as normal. They said that the brain responded normally on both sides... they had already perceived that she was turning her head toward sound, but her response was slower than what they thought it should be. They think that part of the reason for her slower reaction is due to her tightened muscles that she has. God is good and his timing is alright with us... we will just continue to pray! Just Monday the rehab doctor came in to talk with Tammy personally about Taylor's sight and hearing tests that were done in Duke. He was not sure if Tammy had been given the news that she might be blind in both eyes and deaf in one ear. Tammy said that he teared up while talking with her. He apologized for losing his composure, and Tammy told him that it was reassuring to her that he had that much compassion for a patient he barely knew. Now today the news is different, and it continues to show us that God is still continuing to heal Taylor! "Heal me Oh Lord, and I will be healed..." Yes indeed! We will continue to "lift our eyes unto the Hills from whence cometh our help." (That’s a paraphrased Bible verse...my old catechism days come back from time to time but never as accurate as I would wish)
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And then another email just moments ago...

Jeff called me on his way back home to Richlands. He wanted to share the good news also about Taylor's hearing test. He said that there is a very noticeable difference in Taylor since she has had several days of therapy. She is much more relaxed and peaceful, and he said that he saw her smile open mouthed twice today!! He said it seems as if little by little Taylor is coming back to them and agreed that God is not done with Taylor yet!

God Bless
~

Tuesday, March 3

A quick recap that Tammy sent yesterday… We can’t help but be thankful for the friends, family, and blessings that the Lord has bestowed us.

 

Taylor is still doing a good job in therapy.  Today, she coo-ed doing both her sessions with OT.  It made my heart smile. J  Jeff and I had our first Care Conference this morning.  Basically, this was a meeting with everyone who is involved with Taylor.  They gave us an idea of what they hoped to get out of Taylor.  Simple things like, turning her head to recognize toys and faces, bringing her hands together, and kicking her legs while relaxed...They estimate that she needs about 6 weeks of therapy.  Therefore, our estimated date of departure is April 9th.  It could be more or less depending on how Taylor is doing.  Jeff and I celebrate our 5th anniversary on April 10th, so it would be a great present to have her home by the 10th.  We'll have to wait and see.  Personally, I can already tell a difference in Taylor's healing.  The therapists and nurses say she tries to localize with her eyes and she does turn her head towards noises.  When you're with her all the time, you kind of get the same impression, but you don't know if you’re just desperate for good news.  It's good to hear it from the professionals!  We're just so thankful that she was given the chance to be here...

Love ya lots!!! 

Tammy

God Bless

~

Monday, March 2

I got my update in the car on my way home from work, so hopefully I will remember enough to provide a quick update. I will try to get more detailed information the first chance I get!

Tammy and Jeff had a team meeting with several therapists/doctors in the rehab facility. They have set goals for her, and they told Jeff and Tammy that they plan to keep her there for the full 6 weeks, and at the end of 6 weeks if she hasn’t met all her goals, they will come up with a new therapy plan and work with her until she does meet her goals! Thank God they have opened Taylor with open arms and plan to see this through. Apparently Taylor is doing awesome with therapy and well on her way to meeting some objectives already. From what I understand the therapists are a wonderful group of people, Angels sent to work with Taylor.

Unfortunately, the latest tests on Taylor’s heart showed that her heart has digressed some. I don’t have the official stats, but they will obviously keep a close eye on this. They plan to adjust her heart meds, as Taylor had gained some weight while she was at Duke, but the medicine levels were still based off her previous weight. Hopefully this will help things. It can be frustrating at times, but the cardiomyopathy meds may take several months before we start seeing much improvement.

God Bless

~

Friday, February 27

Today Tanner got to see Taylor for the first time in 7 weeks. My sister Karen brought Tanner and her son Jaden to see us. Getting two three olds out of the car and into the building was a challenge. They both were karate chopping each other and trying to race to see who would be first to the door.  Just like boys... :-->   Tanner was so adorable when he saw her......The first thing he said was, "can I rub her gently?"  He rubbed her beautiful head and then asked if he could hold "baby Taylor."  He only held her for about two minutes, but he showered her with hugs and kisses!  Then, we went on a walk to the cafeteria WITH Taylor!  That's right, I said WITH Taylor.  She is not hooked up to heart monitors in rehab, so we can walk her around the room and take her for a stroll when ever we want!  We loaded Taylor in the wagon and away we went to get some lunch.  Boy, that was a lot of fun!  Tanner and Jaden each had to have one hand on the wagon and they wanted to run with her.  Both of the boys ran over each other's foot in the process.  It's a little preview to what "home" life will be like when she's ready to go home....kind of scary........So far rehab has been good.   She has PT in about an hour.  She gets a little cranky when anyone tries to move her around.  I guess it's going to take a while to figure out how to "relax" her muscles again.  Well, let me run.  Dick and Donna should be here real soon!  Love ya'll! 

  

Tammy

Thursday, February 26

We finally made it!!! We arrived at Pitt Memorial Hospital around 12:30pm. Taylor is resting comfortably, probably dreaming of her brothers. All of the staff in the Rehab facility have been outstanding. They are so sweet and so encouraging. They have Taylor on the schedule to start rehab at 8:30 in the morning. Occupation, Speech, and Physical Therapy will access her to see what her goals should be and we will have our first "care conference" on Monday. In our conference, they will discuss where Taylor is now and where they think she should be. They will also give us a projected departure date. Tanner has been talking a lot about Taylor lately. He asks when she's coming home so he can help hold her. How sweet! Tate is still somewhat clueless. He does however, realize when his daddy is out of the house. Yesterday when I was home, he walked around the house yelling and looking for daddy. It was really cute. I'm sure they are just as ready for us to be home as a family again just as much as Jeff and I are. Tonight Jeff is taking Tanner and Tate to support his girls high school basketball team. They are in the 2nd round of the state playoffs. He is mighty brave to be taking both of them! I told him to make sure he has lolly pops in his pocket for Tate!!! Well, I better run...the Princess wants to be picked up! Love you all! Tammy

God Bless

~

Tuesday, February 24

Well... we have another delay and Taylor did not go back to Pitt Memorial this morning. It appears that Taylor has a second infection developing in her Broviac Catheter tube and they will need to remove it after all. Pitt Memorial won’t accept her with an IV, so they will have to finish the antibiotic cycle at the very least. Below is an email Tammy sent late this afternoon with more details.

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So this is the deal, the doctors here at Duke have been doing blood cultures daily since Taylor's episode last Thursday. They determined that she had a bacterial (staff infection) in her Broviac. Since then, a second infection appeared on a culture they did on the 20th. She has not tested positive for anything since the 20th, but they will be giving her 10 days worth of antibiotics to kill any infection. This morning the doctors came in and said Taylor will need to have the Broviac taken out. They put in an IV in her left foot around 2pm and are trying to schedule her to have the Broviac taken out this evening. If they don't get to her today, they are hoping to get it taken care of tomorrow. As for Greenville... when we will be going is still up in the air. They just said they should be able to get us there this week. Everything happens for a reason, right! Taylor has had a great day with Physical and Occupational Therapy. During PT, she was very alert and even pulled her head up when she was on her tummy exercising. She was also able to suck again a few times during OT. The therapist has been trying to seduce her with apple sauce... She took a little bit. Later, with me I spoon fed her a little bit of apple sauce. I didn't give her much because the therapist said to try this twice a day, only giving 5 to 6 tiny bites at a time. However, she did very well. She licked it and kind of gave me a look like, "what are you putting in my mouth?" She digested all of it and never once spit it out. I just kept smiling and praising her for the outstanding job she was doing... Little by little, Taylor is amazing us all!... I spoke to a mother of 3, from New Bern, North Carolina last night on the phone. Like Jeff and I, they have two boys and a girl. Her daughter was diagnosed with Cardiomyopathy when she was 13 months old. It has been 3 years now and she is completely healed. She is a walking miracle and a testament to what God can do. It was good to talk to someone who has been in my shoes and had some inspiring stories of her little girl. It gave me a lot of hope to hear her story. God is good and He's not done with Taylor... sending my love!

Tammy
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God Bless
~

Monday, February 23

Good News! The insurance company accepted Taylor’s rehab! Greenville is aware of the infection with the Broviac and has agreed to treat that as well and they are ready for her. They will be leaving Duke at 9:30 in the morning (Tuesday). We thank the Lord for this blessing!! The RPN at Duke told them she was thankful that Jeff and Tammy pushed the issue. She said sometimes parents don’t know to be so assertive. I’m confident that Taylor will show that same determination in rehab!

God Bless
~