WOW! What a year!

Wow!  We have had a wonderful year!  Over Spring Break, we took our children to the most Magical Place in the world....Disney World!  We made it a big family trip, as my sister Karen and her huge family came along, as well as, my parents and uncle Larry.  We stayed together in a large home and visited 4 disney theme parks.....The Magic Kingdom, Hollywood Studios, The Animal Kingdom, and Epcot.  We had so much fun and got some great pictures of everyone.  We were a little concerned on how Taylor would handle a full day at the parks considering how hot the temperature got.  However, she was a real trooper.  We even stayed a full 8 hours at the Animal Kingdom with her.  Thankfully, there was plenty of shade for Taylor to rest in!  The Magic Kingdom lived up to it's name....MAGIC!  We were fortunate enough to get lots of pictures with Mickey, Minnie, Pluto, Daisy, and even Mary Poppins!  We were very blessed to have such a great family vacation! 

Jeff coached Tanner and Tate's tball team again this summer and it was more than he bargained for!  Don't get me wrong, he loved it and would do it again in a heart beat, but man.....I swear those kids sucked down an energy drink before they came to every practice!  Jeff would be drinched in sweat after a one hour practice with 5-6 year olds.  He was constantly redirecting and trying everything he could to keep their attention.  Thank God we don't teach K-2!  Regardless, the boys had a blast and we loved watching them slide into home plate face first even though the ball was no where in sight!

As soon as school got out for the year, we packed up and headed to Iowa for a fun summer vacation at Lake Okoboji.  Ofcourse, the boys had an absolute blast playing with all their cousins.  They also enjoyed boating and tubing.  Dick, Jeff, and Tim took turns giving the kids whip lash... LOL!  The look on their faces was priceless!  They were grinning from ear to ear with excitement and fear at the same time!  I even tried the tube a couple of times.  Thanks to Tim, I couldn't move my arms for 2 days, but that's okay :-)  Fishing was not great this summer due to the excess heat.  However, that didn't stop the boys from the WHITEHEAD CUP!  I would like to send a special congratulations to Papa Dick for winning his first WHITEHEAD CUP!  May there be many more in the future!

Jeff and I are very much enjoying the last 2 weeks of summer break.  We will soon be heading back to work on August 17th.  Tanner will be in the 2nd grade and Tate will be starting Kindergarten.  Please pray for Tate's teacher.....daily!  Gotta love teachers!  No, seriously....my boys are very good boys.  I have no doubt they will have a successful school year.  They will play soccer in the Fall and then Tanner will try basketball in the Winter.  I am going to attempt to coach Tanner's soccer team, so prayers are appreciated there, too!

Taylor will be turning 4 soon.  She's getting so big and so beautiful.   She's turned into such a cute little girl.  She loves for you to stroke her hair and talk/sing to her and of course she loves her daddy's voice.  Taylor continues to see her cardiologist every 6 months and her neurologist every 3 months.  Everything seems to remain the same.  She has her good weeks and her bad weeks.  She typically gets a nasty upper respiratory infection every 3 to 4 months and then that takes 3 weeks to fully recover from.   It's definitely hard to see her struggle, but her strength is amazing and we love on her even more during those times.  She's our little angel!

~love to you all~

Tammy

Time is Flying By!

I can't believe it is almost February! This school year has flown by! Tanner man is in the 1st grade and still loving school. His favorite subject is Science followed by Math. He is very shy at school, but makes up for it at home. Tate has started going to a Pre School program once a week with his cousin Kennedy and loves it. He has finally mastered writing his own name! He is also very much into wrapping items that he finds around the house and giving them to me as presents. He has recently given me a necklace, candy dish, and a toy dinosaur. He looks so sweet and sincere when he gives it to me. It just melts my heart..... Taylor bug is looking good now. She had a really rough month in December and even spent one night in the hospital. It was all viral, but it took a lot out of her. Thankfully, we were still able to fly to Jeff's hometown for Christmas to visit with his wonderful family. The boys went roller skating and skiing for the first time. They were amazing! It was one of those moments as a mom, where you feared they were going to fall and get hurt, but the excitement on their face made everything okay. I'm sure we will have many more of those days to come!

Recently, Taylor had a recheck with her cardiologist Dr. Hannon. Unfortunately, it was not the best of news. He said her heart had gotten a tad bit larger over the last 6 months. When I asked him if this was a significant change, he said, "it is not a significant change, but definitely a noticeable change. The size of her heart has increased by 5 mm over the last 6 months." He thought, her heart may have been stressed because of how sick she was back in December. She was pretty much on oxygen and taking breathing treatments every 3-4 hours for a good month. So, he put her back on Digoxin and increased her carvedilol from 2x a day back to 3x a day. She has another Echo scheduled for February 3rd, so we are hoping for some better news. I will try and update then.....

Thanks for the continued prayers!

~Tammy~

Great News!

Let's start with the great news! Friday, Taylor had an appointment with her cardiologist, Dr.Hannon. After he previewed the pictures of her echo, he said, "this is amazing...Taylor is finally starting to grow into her heart. This is the best echo she's had yet." He went on to say from the naked eye, he wouldn't even think Taylor had cardiomyopathy. Her heart looked and measured like any other little girl her age and her heart had healed itself. I asked him if her heart was enlarged anymore and he said, "NO."

It's hard to explain how I felt on the inside when Dr. Hannon said my little girls heart looked normal. I probably would have broke down and cried right there, but Scrappy was sitting on my lap passing gas so I was trying hard not to spank him in front of the doctor and his technician! LOL! Seriously though, I am over the top happy and thankful that God has healed my baby girl's heart.

Dr. Hannon took Taylor off one of her heart medications (digoxin) and he will start to ween her off another one October 1st. We will visit him again at the end of October in hopes to ween her off a second one. I'm still in AWE over this awesome news!

.......................................................................................
This year has been so full of up and downs. Taylor's seizures really came back hard towards April/May so he neurologist added another seizure medication to her schedule. I feel like it has helped quite a bit, but it's hard not really knowing what's going on in Taylor's head. She's definitely not having the hard/draining 10 minute seizures she was having in May!

This past week has been tough for Taylor. She came down with a virus on Tuesday and it has taken a toll on her. She ran a temp for 2 days and we spent about 6 hours in the ER getting labs, cultures, and x-rays drawn. Everything turned out normal, so it ended up being a nasty virus. She's been uncomfortable and very lethargic since Tuesday. It usually takes 4 to 5 days for Tay to recover when she gets a bug like this, so hopefully she will feel better in the morning. Regardless, it is hard to see her suffer when she is sick.

The boys have a love/hate relationship. They play so well together and then 1 minute later, Tanner has Scrappy in a headlock. I'm guessing this is what Jeff and Tim were like growing up! They will be best friends one day (I keep telling myself that). Scrappy turned 4 in June and had a great birthday party. Jeff and Scrappy share their birthday, so it's twice as special. Tanner had a great experience in Kindergarten! He really opened up towards the end of the year. He's enjoying his summer break because he doesn't have homework every night, but is looking forward to the 1st grade.

Jeff and I are very much enjoying our summer vacation. We were able to fly to Iowa at the end of June and spent some great quality time with Jeff's family. We also have a camping trip set up with my family in a couple of weeks. We've been to the beach a few times and try and take the boys to the movies once a week. AND of course, we are holding and interacting with Taylor as much as we can. She loves to be held and talked to. When she's healthy, she talk right back to you.....

Thanks to all who have prayed daily for Taylor's heart to heal......it HAPPENED..... Remember, with God All things are possible! Thank you for continuing to pray for Taylor. Please pray for her to build a stronger immune system so she won't catch viruses so easily.

God Bless~

Tammy

Sunday, March 27, 2011

I can't believe March is almost over! This year is flying by! Taylor is doing well....hospital free since July(which was planned because of the new diet). We are so thrilled to say we've had a good year! Everything has pretty much been the same, with the exception of Taylor's continued small seizure activity that has started back since Christmas. Weird thing is she only has them when she wakes up from sleeping. It's almost like something in her brain is not connecting right when she wakes up from a nap? I asked her neurologist about this and she said, there's no real answer. The brain is so complex...... Tay continues to have between 2-5 seizures per day lasting anywhere from 1 to 5 minutes. We have had to use diastat a couple of times, but she came out of her seizure immediately so we did not have to take her to the hospital. Neuro is adjusting meds and her diet in hopes to find a solution. Taylor also got a back brace in February and wears it typically 3-4 hours a day. We're hoping this will correct some of the curve in her spine. She doesn't seem to mind wearing it, but it is already getting tight. We go back in April and they will probably have to adjust it. Tanner is playing recreation soccer again and LOVING it! He only has a few more weeks left and then he will begin T-Ball. Jeff has decided to coach Tanner's team. This should be fun to watch....Jeff with 11 other 5 year olds......Tanner is so proud and excited that his daddy will be coaching him. They have been practicing hard in the back yard. It melts my heart to see Jeff play with the boys. They admire him so much! Tate is Tate! He makes me laugh and cry! Lol! He hates milk with a passion and we are trying to make him drink it with dinner every night. He often spends 10 extra minutes by himself at the table every night because he doesn't want to drink his milk. A couple of times he feel asleep waiting to drink it. I think he gets his stubbornness from his daddy :-) okay, okay.....maybe from me! Tate still loves bugs, snakes, dinosaurs, and horses. He surrounds himself with toys and can usually entertain himself! Jeff and I are doing well. We are getting ready to celebrate 7th years of being married on April 10th. Hopefully, we'll find time to grab some dinner and a movie! I love Jeff with all of my heart and am so happy to have him for my soul mate! I hope everyone is enjoying the Spring weather! Love to you all.... Tammy

Happy New Year!

We hope everybody had a very Merry Christmas and a great New Year! We were able to fly to IA to spend 10 fantastic days with Jeff's family. The boys had the best time playing in the snow and spending time with family. Taylor was spoiled non stop with the amount of attention she was getting! I think that girl was held 24/7. It was really nice being able to see all of our IA family and friends. It had been 2 years since we have been there........

Before we went on Christmas break, Taylor had a cardio check up and we got even better news! Dr. Hannon took Taylor out of the moderate stage and placed her in the mild......He said, it was "astonishing to see where Taylor's heart was two years ago and see where it is today!" In fact, when they measured it he said, at one angle when you look at her heart it looks totally normal. Then, when you start to take the measurements you can tell their is a heart deformity. He was very positive and we even talked about starting to ween her down on one of her heart meds. He recommended that we wait until this Spring and steer clear of the Winter months before we start the transition.

Speaking of weening......Taylor is now completely off of one of her seizure meds, phenobarbital!!! This was such exciting news! Now for the kicker........Taylor has been seizure free for quite a while and then out of the blue she starting having 1 to 2 per day.....This is still nothing compared to what her life was like last year, but it is still puzzling. We are trying to figure out what is going on with her? Regardless, she is still a very happy girl and loves all the cuddle time she gets daily!

Today I took Taylor to see a pediatric orthopedists at Duke. They took an x-ray of her spine and officially told us she has Scoliosis. We kind of already knew this because it is visible to see the curve in her back. The x-ray showed her spine was curved at 40% and she needed to have a back brace. So, they measured her and we picked out a cute back brace that has pink hearts all over it(you know she's got to look good in it) and it will be ready February 3rd.

Everyone is doing great and We are looking forward to what 2011 has in store for us~

Tammy

September 15, 2010

Saturday, (9/11) Taylor celebrated her 2nd birthday!!! We had a full day of fun as we started out going to Farmer's Day and ended it with a big birthday celebration! We had a lots of family and friends over for the occasion. Taylor seemed to like all the attention! She received lots of new adorable clothes and also got a cute hot pink bean bag chair.

Tanner started kindergarten this year and for the most part is loving it. He's had a couple rough starts in the morning, but then does really well! I can't believe he is already 5 years old!!!

Scrappy is also doing good. He has really turned into a mama's boy! He's a real nut!

September 6, 2010

Let's see....Taylor is continuing to do very well on this new diet. Over the past 6 weeks, her neurologist has decreased her phenobarbital (one of her seizure medications) by 40 percent. They are planning to decrease it by 20 percent every month. So, hopefully 6 months from now, we can say bye bye to phenobarbital!

Taylor also had a very positive echo check in July. Dr. Hannon said her heart was still very enlarged, but was pumping very well. He confirmed that she was OUT of the severe category and into the moderate. He also mentioned that Taylor was BARELY in the moderate stage and almost into the mild! I almost cried sitting in the doctors office that day! Honestly, that was the best news that I had heard in a long time. It was such a positive moment!

Taylor is looking good and continuing to be our little angel on earth!

love~

Tammy

Taylor's sweet voice!

Smiling Taylor...August 1, 2010

I took Taylor swimming at my friend Angela's pool. As you can see by the picture, Taylor really enjoyed herself!!!

New Equipment--Thursday, July 23,2010

Yay! Taylor got her kid-kart and stander today! She did very well for her first day!

Scrappy bustin a move! Enjoy!!!

Wednesday, July 21,2010

Taylor passed out after a long hour of PT! LOL!

Life is like a box of Chocolates!

Finally, some good news! Taylor was admitted to Duke University Medical Hospital July 6th-13th to start a new diet called a ketogenic diet. This was very exciting news because we have been waiting since Febuary for Duke to hire a Nutritionist that specializes in this diet. She stayed in the hospital for 6 days in order to get everything straight before the docs would release her.

Now your probably asking what is the ketogenic diet and how does this help Taylor? Hopefully this info will help explain it......

By the 1920's doctors at the Mayo Clinic and Johns Hopkins Hospital realized that people could eat a very high fat diet with almost no carbohydrates(no pasta, potatoes, baked breads, or cookies) and significantly reduce or stop seizures for many people. They created an artificial diet which causes teh body to use fat for energy and produces chemicals called "ketones" as a by-product. It was named thed "ketogenic diet" and it allowed people with seizures to eat a limited amount of foods high in fat while they were trying to control their seizures. Basically, Taylor's diet will consist of 90% fat and 10% carbs/protein.

What exactly is a "ketone?"

Our bodies normally use blood sugar(glucose), made of the carbohydrates we eat, like rice and muffins, for energy. "Ketones" are chemical by-products which are made by the body out of fat when there is no glucose to be used for energy. The "ketones" can be used by the body for energy. The higher Taylor's ketone level is, the better chance she will have less seizures.

Another big change we had to do was switch all but one of Taylor's medications to pill form. This is not a hard change, since all we have to do is crush her medication and mix it with water. However, we have to allow for more prep time before she gets meds.

Now for the GREAT news! Since Taylor has started the ketogenic diet she has gone from 35+ seizures per day to almost non-existent!!! Today, she only had one visible seizure and the three days prior she didn't have ANY! It is amazing how much Taylor has benefited from this diet. It's like she's a new baby! She's so much more alert! She's kicking her feet again, having some head control, searching the room for voices, finding her voice, and SMILING all the time. It feels so good to see Taylor in this alert stage! We can't help, but to be excited for what the future holds.

She has a follow up appointment with neuro at Duke on August 4th. The hope is that they will start to reduce the amount of seizure meds that she takes. We have seen such an significant improvement in just 2 weeks. Imagine what could happen if she could slowly be weened from some meds!!!

Taylor also has a echo scheduled this Friday with her cardiologist. We pray every day for Taylor's enlarged heart to heal. Hopefully, she will have some progress! Thanks for your continued support and prayers!

Much love,

Tammy

4/20/2010

This past week has been very difficult. On Wednesday, the 14th Taylor started having an abnormal amount of seizures. Her nurse called to inform me of increased seizure activity about mid morning and advised me to call Duke and consult with her neurologist. Within an hour, her seizures got worse. She was having one right after another. They are called cluster seizures. (Cluster Seizures: Two or more seizures occurring over a brief period of time (minutes to hours) but with the patient regaining consciousness between the seizures.)

I came home from work and had to give Taylor a medication called Diastat. (Diastat works to stop seizure activity by acting on brain cell interactions that inhibit the seizure discharges. Diastat is rapidly absorbed from the lining of the rectum and quickly achieves therapeutic levels in the serum).

Even with the Diastat, Taylor's seizures were still coming so I had to take her to the hospital. The doctors ordered blood test, a chest x-ray, and a urine culture. Everything came back fine, so they were a little perplexed to why Taylor was having increase seizures. They consulted with Duke and they said to increase her Valium and send her home. We were to call Duke in the morning and give them a report of how Taylor's evening and into the morning went.

Just as soon as Taylor woke up, she started having seizures again. Duke said bring her in and they would start her on a IVIG. *She had an IVIG back in February when she was having increased seizures.* When we got to Duke, the nurses had a hard time starting an IV on Taylor. Two nurses from the IV team each tried 4 times each to start an IV, but were unsuccessful. Then, Taylor's neurologist tried to get IV access, but was unable to get it either. They decided to give her break and a few hours later they brought in a nurse from the PICU to give it a try. She got it on the first try, however she had to put it in her neck. It looked very awkward and when Taylor was awake she acted miserable. I think it was a combination of soreness from the 9 new bruises, sticky leads on her chest/belly, and the uncomfortable IV in her neck. Luckily, she was only in the hospital Thursday through Saturday, so the IV didn't have to stay long.

She started the IVIG Friday morning along with a couple new medications. They took her off Valium and put her on Klonopin. They also started a new seizure medication called Keppra and increased her baclofen for muscle tightness. For the first 4 days, Taylor was completely out of it! She finally starting to wake up a little bit on Monday and even a little more today. She's actually smiled a few times today. She's so precious! :-) Hopefully by the end of the week, she will be much more alert.......

Thanks for everyone's concern and extra prayers throughout the week for little Taylor. We love and appreciate you all!

God Bless ~ Tammy

March 12, 2010

Note: Sorry for the delay. Just going through some old emails and realized this update got lost in the shuffle.
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Friday, March 5th Taylor had an appointment in Greenville to see Dr. Strope. He decided to discontinue her Prevacid because we did not feel it was making a difference with Taylor's upper respiratory congestion. He also mentioned that we needed to follow up with Taylor's regular pediatrician concerning getting a x-ray of her spinal cord. He feels that her back might be starting to curve slightly. We see Dr. Gant on the 15th for Taylor's 18 month check up so we will discuss that at her appointment.

After her check up with Dr. Strope, we drove to the Pitt Memorial Rehabilitation Center to visit with some of Taylor's old nurses and therapist. As soon as we walked in the door, a nurse we had never seen before said, "that's Taylor.....I've seen her picture and Casey has talked so much about her." How awesome it was to know that these great people care so much about our daughter. It was very nice visiting with them, as we saw MANY nurses and therapist that made a DIFFERENCE in Taylor's life.

Tanner just started Recreation Soccer this past week. He and his cousin, Jaden are on the same team. DOUBLE TROUBLE! THey had so much fun high fiving each other during practice, they forgot to take part of kicking the ball at times.....It was so much fun to see him practice! His first game is this Sunday and you better believe I'll be recording this memory! ~ Tate is just happy to be playing on the playground while Tanner plays!

God Bless,

Tammy

Happy March everybody...February landed Taylor at Duke Medical Hospital for a week in order to try and figure out what to do about her seizures. The neurologist ended up taking Taylor off two seizure medications (sabril and topomax). They are trying her on a new seizure medication called zonegran. Since her stay at the hospital, Taylor's seizures have decreased slightly. She still has between 6 to 8 per day, but that's an improvement! Taylor has also been much more alert and verbal over the last month. I really feel taking her off the sabril medication has made a huge difference in her physical appearance!

Friday(March 3rd) we travel to Greenville to see a Pulmonologist. Taylor struggles so much with off and on wheezing and upper airway congestion. One minute she sounds terrible and the next she sounds great. She still receives oxygen throughout the night and as needed when napping.

On March 17th, we will travel back to Duke for a Neuro check. They would like to start Taylor on a new kenogentic diet. It was not available when we were there in February. They said it would become available at Duke within the next 6-10 weeks. This is what the Epilepsy foundation website says about the diet...

The ketogenic diet, which is very high in fats and low in carbohydrates, was first developed almost 80 years ago. It makes the body burn fat for energy instead of glucose. When carefully monitored by a medical team familiar with its use, the diet helps two out of three children who are tried on it and may prevent seizures completely in one out of three. It is a strict diet, and takes a strong commitment from the whole family. The ketogenic diet is not a do-it-yourself diet. It is a serious form of treatment that, like other therapies for epilepsy, has some side effects that have to be watched for. More research is being done to learn about the underlying reasons for the diet's positive effect. http://www.epilepsyfoundation.org/answerplace/Medical/treatment/diet/

Sorry, I haven't done a better job updating Taylor's blog.....I feel so overwhelmed at times. I feel like I could climb in a cave and sleep for days! Life is just really busy with 3 kids begging for attention as soon as Jeff and I get home from work. I will try and do better.....

(Donna B. Thank you for keeping up with our daughter's progress. You and your family were so kind to us when we met you in Durham. We will never forget you!)

Every night we say this prayer for our little Taylor. Tanner and Tate know it by heart and pray it with us...

Heavenly Father, through your son Jesus Christ, All things are Possible. In the name of Jesus, Heal her Heart, Mend her Mind, and Restore Her Body. In Jesus' Name...Amen.

Love,
Tammy

God Bless
~

January 29, 2010

Good evening everybody,

A lot has happened with Taylor over the last couple of weeks. We'll start with the good news....

Actually, it is great news! Taylor had an echo last Friday (the 22nd) and Dr. Hannon said her heart has made significant improvement over the past year. Her left ventricle looked smaller in size and her two leaky valves were almost non-detectable! Her injection fracture also improved from 44% to 60%. He said there was a chance that Taylor's heart could some day heal on it's own. This was fabulous news and Jeff and I were over joyed!!! She will follow up with another echo in July.....

Now for the bad news....

Taylor has continued to have many seizures a day, however over the past month they have increased in duration. Before she might have a seizure anywhere from 5 seconds to 1 minute. Now, some are lasting close to 3 minutes. On Wednesday, Dr. Winchester (her neurologist) ordered an EEG to be performed at Duke University Medical Center. Upon reviewing the study, they saw that indeed Taylor was having longer seizures, as well as abnormal brain wave spikes. This means Taylor's brain is being irritated. Dr. Winchester thinks it is possibly due to the new seizure medication (Sabril) that she started on in late December. The doctor admitted Taylor to the hospital for further observation.

So, the plan is to slowly wean her off the Sabril by tomorrow(Saturday). They have also increased two medications she is already on~(Phenobarbital and Vitamin B-6). Meanwhile, they are also weaning her off another seizure medication (topomax) and starting her on another medication (zonergram). Currently we are waiting on a cardio consult because they also want to start her on a steroid called ACTH for infantile spasms (seizures). The problem with ACTH is it high risk for infections. Before they start the ACTH, they want to start the medication IVIG in order to boost her immune system. The IVIG would need to be given over a 5 day period.

Hopefully, we will see a change in Taylor's seizures and she will be able to go home by Wednesday (February 3rd). Thanks for all the prayers and concern!

~ Tammy

~God Bless

Tuesday, January 4

First of all, we hope everyone had a very Merry Christmas and a Happy New Year. We had a very excited Christmas as we watched our two boys tear through their Christmas presents in a record 1 minute and 22 seconds! Then, for the rest of the day they played their little hearts out! Taylor was also as cute as a bug throwing us a smile here and there. All in all, it was a great day for the family.

In November, Taylor went back for a 4 day stay at Pitt Memorial Hospital. She was diagnosed with mild case of pneumonia. Thankfully we had her home by Thanksgiving! Unfortunately, she has continued to have upper respiratory congestion.

In early December, we took Taylor back to Greenville to see a Pulmonologist. He recommended that she take a Prevacaid for reflux. Although, Taylor had a Nissan when she had GTube surgery he still felt she might be having some acid reflux. We will follow up with them in February.

Taylor also visited her neurologist at Duke University Medical Center. They decided to put her on a new seizure medication called Sabril. This medication is relatively new in the United States, as it has only been approved for about a year. However, it has been approved in Europe and Canada for the past 20 years. The main side effect is loss of peripheral vision. She was required to see an Opthamologist to have a vision exam before starting Sabril She will take this medication for 3 months and then require another vision exam.

So, on December 21st, we made our way back to Duke to see an Ophthalmologist. The doctor performed her exam and kind of gave us some bad news. She felt that Taylor was completely blind. Even when she shined the brightest of all lights into Taylor’s eyes, she did not have a response. She told us what we had already heard concerning damage to the occipital lobes. She also said that if we were able to get a grasp on Taylor’s seizures that could help improve her chances to possibly see again. We are still hopeful that another part of Taylor’s brain will compensate for the damage to her occipital lobes.

Just recently, on New Years Day, Taylor started having some abnormal seizures. Her heart rate went up and she spiked a low grade fever. We took her to Pitt Memorial Hospital and they admitted her over night for observation. She didn’t have any more abnormal seizures while we were there, so they discharged the next day. This afternoon, the doctor from PCMH called and said Taylor has a Urinary Track Infection. The bacteria Ecoli grew on her urine culture, resulting in a UTI. She called in a prescription and she will start that tomorrow.

Exactly one year ago today, Taylor struggled to make it through the night. She held on with every ounce of her and showed tremendous strength. It is because of her will to live and God’s Grace that she has come so far. Today was a hard day, thinking back to what our family has endured over this past year. I still don’t know how we did it… However, there’s a verse in the Bible that comes to my mind, “I can do all things through Christ who strengthens me.” Philippians 4:13. I have said this verse in my head many times…

God Bless ~ Tammy

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
~