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