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
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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
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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

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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
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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
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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

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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

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