Summer Update

Hello! Harrison has had a really great summer. He walked on the beach for the first time this summer. It was so fun to watch him hesitate. He did not like it when the water came up and the sand started to slip away from under his feet. By the 10th day at the beach he was having a blast and trying to jump the tiny waves. He loved throwing his boat into the ocean and watching it wash up to shore.

He also rode a train and went to the zoo for the first time. The Fort Worth Zoo has a train. He really loved riding the train. He wasn't too into the zoo animals. But the train, we could have done that all day. He is obsessed with Thomas the Tank engine and all other trains.

He started school on August 24th. Will is in 3rd grade and Harrison goes to preschool at a different school. He rides a big yellow bus and loves it. I was afraid he would cry, but he didn't. He goes to school everyday.

His health has been great. We saw Cardiology this summer and we don't have to go back until next summer. That means once a year, instead of twice a year. His biggest challenge right now is his speech. We are going to a hospital in Dallas to evaluate Harrison for an augmentative speech device. We have the visit on September 21st. He does speak a little. We know what he is saying about 60 % of the time and outsiders may know about 10% of the time. The therapist say that his severe expressive speech is due to his syndrome and his cp. To date, these are his words and definitions: mama, papa, wawa (Will, waffle, and water), nana (grandmother and banana), ooo (blue), mare (more), me (him), lela (Bella our dog, or any dog), mimi (Emma), bobo (boat), bubboos (bubbles), ellow (yellow), urple (purple), urtle (turtle), Pam (Aunt Pam), nana (no), actually he says nana, wawa (which means no, William), he can say eye and toe. So, he has a good vocabulary started.

Will is having oral surgery on the 24th. He is missing a permanent tooth, so he is having his baby tooth pulled. He is also having his tongue clipped. After having speech therapy since he was 3 the dentist discovered that he is tongue tied. Amazing, I always wonder about that. He is pretty excited. He has never been able to lick an ice cream cone and is looking forward to it.

Thanks for checking in on us.

Good Morning Texas...here comes Harrison

Has it really been this long. Wow, when the children get in school life really gets busy. We are working on our Heart Walk fundrasing right now.

School starts back on the 24th of August, so I will have plenty of time to update our blog on the past 6 months. FYI...Harrison is doing great, health wise.



Here is a link to our segment on Good Morning Texas. I hope it works for everyone. If it doesn't, you can go to www.wfaa.com/gmt...click on video link and scroll down to American Heart Walk Northtexas toddler.

http://www.wfaa.com/video/gmtgeneral-index.html?nvid=390611&noad=yes&shu=1

We are okay...I am addicted to FACEBOOK!

I am so bad at updating my blog that I created. We have been so busy since 2009 began. Harrison started his new school on January 6th. He has been sick 3 times already. He was at school the first week and then on the 12th he came home with a fever. Three days home and diagnosed with strep throat (our first). Then we went to Disney World on the 17th. We got back the 21 and he went to school on 22nd and 23rd of January. That weekend he had another little fever that went away. The last week of January school was closed for one day because ice. Then William got a fever and it was induced by his asthma. So, here we are in February. On Saturday the 7th I went to a wedding shower and bragged about Harrison not having an ear infection since last March. Ha, never brag ladies it will bite you in the butt. I got home and my husband said H's hair was stuck to his ear from puss draining out of his right ear. Well, the ear had to be suctioned out by his ENT yesterday and now we are on drops for 7 days. If it doesn't clear up he will go to plan B. Welcome to the new germ pool Harrison. By the way, I found out that H is only receiving 20 minutes of Speech a week at his new school. At this rate he may talk in time for college. I am planning to get him private speech.

Words...he finally said Pappa for daddy. He says:
pappa
mama
nana (grandmother)
nana (banana)
nana (no)
all (ball)
iii (William)
houw (house)
uuu (blue)

He knows his shapes circle, square, triangle, and diamond. He knows 3 colors: blue, red, and yellow.

It is so cute. We are so thrilled he has the words he has. He is still signing a lot. I am sure he may have more words, but we haven't figured them out yet.

I'll write more later. He got weighed at nephrology...he weighs a whopping 28 pounds.

He got in!!!

After a long 3 years of Harrison's battles with surgeries and development we are finally on the road moving forward. Harrison qualified for PPCD (Preschool Program for Children w/ Disabilities). He will attend M-F from 8 to 2:15. Hopefully, with the trained teacher, aides and therapists he can finally get the help he needs to teach him to have expressive language. My husband would love to hear his son call him d, or dada, or da, or anything besides ma. He is such a little trooper.

Now, we just need to get through his barium enema on the 22nd to determine if he has nerve damage in the intestines that could be causing his constipation. After these results we can move forward.

We are going to have another joyous Christmas! This year marks the 3 year anniversary of having Harrison in our home. After birth and 2 months in the hospital, he was released to go home on December 25, 2005. We heard 3 different Christmas songs on the way to Children's Minneapolis that day. All 3 songs were about going home for Christmas! Enjoy the memories and time you have with the people you love this holiday season!

From our house to yours...Happy Holidays and Merry Christmas!

Good Cardiology Report

Ah, three hours later we got a "good" status. EKG good, heart rate good, blood pressure good, oxygen sats good, echo good, murmur still there, liver position good.

Bottom line is good. The bicuspid valve has not gotten worse, so that is good. They are even letting us come back in 8 months, instead of 6 months. Awesome! Dr. Siu thinks that the small VSD has closed and the murmur is actually created by the bicuspid valve, aka muscle flap. He will compare todays ECHO to last times. This is what they are watching. This is their main concern, aside from the pacemaker of course. The liver is positioned fine. It was probably scar tissue that his pediatrician felt. It's a good thing I don't overreact when doctors tell me something! Thanks for the prayers. They were heard!

Heart Day

Today is Harrison's heart repair anniversary. At 3:40 today it will mark 3 years since we handed our new born over to Dr. Moga, so he could repair his complex heart defects. Recently, we learned that his liver feels low, so tomorrow his cardiologist will check this theory out. We pray that his liver is in the correct place, because if it isn't than that usually indicates a flow problem. This is not what we need right now. Prayers for a great report from cardiology is what we need.

Happy Birthday Harrison!

Yesterday was Harrison's third birthday. It was a fun filled day with carnivals, lunch and toy shopping. He didn't want to play any games at the carnivals. He only wanted to look at the storage shed that looks like a barn. And at the other carnival he wanted to slide and look at the bouncy house that had barns and houses on it.

Lunch was fun. We took him to Chili's and he had a birthday milkshake, which he loved. Today we are having my family over to celebrate his birthday. I am creating a frog cake. He loves frogs! Harrison will have a co-birthday party with his cousin, Owen the first week of December.

Health wise, Harrison is doing good. With a little cold and congestion, he did end up getting put on an antibiotic. Hopefully the eye gook will go away soon. He got a flu shot yesterday...happy birthday (sorry)! We have lots of appointments coming up with Cardiology, GI, Neurology, Infectious Disease, Well Visit, Dentist, and I think Genetics. He has an appointment with a Developmental Pediatrician in March (6 month waiting list) and we had his evaluation with the school system last Friday. Hopefully we will here something soon, because he is not receiving any therapy right now. He is making sounds and putting syllables together, but the words are just not forming. He is saying Ma and trying to get my attention. I love it! I will post pics after the party, soon.