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
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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

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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
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Now Available!

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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).

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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

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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

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