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!

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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