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.

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

Harrison is doing great. He has discovered the toilet and the water inside it. I have been addicted to FACEBOOK, so that is where I have been. I promise to post some pictures this weekend. Remember, no news is good news with heart kiddos! At least this is true 90% of the time. Thank you to everyone who continues to check on us and/or pray for Harrison. Get ready for Halloween. Harrison is going to be a doctor! His scrubs say Doctor in Training and he has a stethoscope.

First day of Preschool

Harrison had his first day of preschool today. You know, I did not take a picture. I will have to do that tomorrow. He goes M-TH for 3 hours. I am there teaching in the four year old class. I peeked in his room today and caught him scribbling with a marker, while sitting at the table. It was so cute. It is difficult to peek in when you are at home. There is something about seeing them interacting or just being in a classroom with peers. We are starting a new diet in our house. I was thinking about cutting out wheat in our diets to see if this would help with Harrison's constipation and behavior issues. Well, I found out that William has a mild to medium allergy to wheat. Just what I needed to do it. Maybe, by cutting out wheat in our day, I can lose some weight too. That would be nice.

Cruisin along...

I have been really bad about updating lately. Everything is going great with Harrison. We have resumed therapies since the surgery. He seems to be recovering nicely with the surgery. We had a little scare with the drainage tube site healing, but luckily it is finally healing. It looks like a dried up umbilical site that just keeps hanging on.

It has been very busy around here with my new preschool position and with William starting school on Monday. We are all anxious to get into our routines and I am sure we will anxious for summer by February. I must admit I caved in and have become addicted to the latest craze...FACEBOOK. Yes, I have joined Facebook.com and I am enjoying seeing people I have not seen since highschool. I have my 20th reunion next summer and now I know I need to work on myself.

Harrison is being referred to a Pediatric Developmental Specialist for his delays. We are making no progress in Expressive Language and his repetitive behaviors are spreading into other areas, so his Behavioral Therapist feels that now is a good time to seek another opinion. I pray that these red flags are all they are RED FLAGS. I could not handle someone telling me anymore bad news. I know that early intervention is the best thing...I'm just not ready for what the future holds. Many parents think about their child's life all the time and that works for them. For me, I try not to think about it too much. I see the scars every day. I hear no words out of his mouth every day. I see him opening and shutting doors every day all day. I see him throwing toys every day. He throws them inside and he will open the back door and throw them outside. This is his day opening and closing and throwing. I adore him and love him and hurt for what he has endured in his short life. And I am only human. This stage of his development is becoming long and remains a high stresser in my life. He does a lot of cute things and those are about 20% of his day. Harrison will be 3 in November and in many ways he is like a 12 month old. It will be one year in November since he took his first step though. I can't believe it has been a year alreay. When I get frustrated with Harrison's behavior I listen to a song I found on the internet. Heaven in your eyes...www.22q.org/music2.html

Go there and listen to it. There are a few others that are just as beautiful. Enjoy. I know...post pictures.

Day 6

Harrison is home! What a week. Considering we were blindsided with this, Harrison handled with courage again. William is feeling a bit "jealous" of all of Harrison gifts he received while at Cook's. Of course, I can't blame him. He is only 7 and it is difficult for him to understand everything that is going on. He just sees his brother always getting gifts when he is in the hospital. In fact, tonight William said he wished he was sick so he could go to the hospital. It just breaks my heart. We explain until we're blue in the face, but he is only 7. Boomer took Will to pick out a frog for himself. This seemed to cheer him up!

As for H, he is doing wonderful. He cried when it was time to leave the hospital. He wanted to stay and play in the playroom. We can't pick him up under the arms until September 12 and there is no swimming until then too. It seems like we were just allowed to pick him up after the last surgery. I hate this part of the recovery. Highchairs and car seats are the worst. No, actually bath tubs. Have you ever tried to pick up a wet 25 pound toddler out of the tub without lifting from the armpits? Try it one night...it is a @#$~^!

Day 4

The pneumothorax will take about 1 to 2 weeks to be completely gone. They are keeping Harrison in the hospital until he will eat and drink his daily intake. His abdomen is still bloated and full of air and poop. When the doctor dug to retrieve the always moving pacemaker he disturbed his bowels. So, Harrison's insides feel like he had a c-section. They are just letting him hang out in the hospital until he can eat and drink. It is 107 here, so being in the hospital is a positive.

Day 3

I left Harrison watching Finding Nemo in his hospital bed. I am teaching Summer Fun this week, so I came home and Boomer is staying with H. I can't believe the one week I work all summer and H is in the hospital. He had a rough day yesterday and this morning. He ate and drank good yesterday morning and by 1 pm he was looking sick. He would not eat or drink anything. He developed another fever. They had him on fluids, but he was not voiding. Let's see, this is what they did...blood work for CBC and WBC, urine test, another blood draw for a culture, suppository to help with you know what, increased his fluid intake, xray this morning, and an echo this morning. The good news is everything has come back negative. The xray still shows air in his chest cavity, but it is a little smaller. The echo shows a little fluid around the heart, but nothing to cause a fever. He had a sponge bath this morning and had a little Vanilla Bean Frappuccino. Mommy knows what he'll drink! Cook Children's is a very proactive hospital. His fever was 101.6 and they were on top of things. The blood culture is still "growing", but I believe they have decided that the constipation was contributing to the fever, as well as early signs of dehydration. The team had him on half the fluids through IV. They did this because they wanted H to drink the rest on his own. He had other plans. I am so glad that Cook is proactive, because this could have gone downhill quickly. The camera is at the hospital, so I will post pics later...I promise!

Surgery Update

I can't upload pictures yet. Okay, surgery did not happen until 8 last night. The case before him ended up taking over 10 hours. Preop kept apologizing and we said we'd rather wait with a hungry 2 year old than to be the parents of the other case. After a long wait we finally met up with H in ICU. They replace his wire and repositioned his pacemaker. All and all it went well, even with a tired surgeon. Last night his xray came back and showed pneumotharax on the right lung. Extra air in the chest cavity. It is slowly decreasing so the plan is to take out the chest tube and hopefully move to the cardiac recovery floor. We will update more later. H looks great and has his frogs surrounding him in bed. And of course, Gordon the train. He has cracked a tiny smile while watching his Thomas the Train movies too.

Surgery Date

Harrison's surgery is set for tomorrow around 1 pm.

Update

We are back from our trip and I will post on it soon. We got back late Wednesday night and have been busy getting everything back on track. House, laundry, yard, etc. Harrison had a great time with Nana and we sent his pacemaker data on Sunday morning. We heard from the cardiology office and apparently he has a kink in his AV wire. They called first thing Monday morning and had us come down asap. Well, we are waiting for the surgeon to call. They have to do surgery to replace his broken wire and to reposition the pacemaker. So, it should happen by the end of next week. Never a dull moment around here. I promise to post picture of beautiful Cozumel as soon as I have his surgery scheduled. Look for pictures by this weekend. Oh, and it is HOT in Texas!

Ruidoso, New Mexico

My mother and I took William, Harrison, and Emma (my niece) to Ruidoso, NM. My brother lives there with his fiance', Serena. We had a blast! This was my first time to be there in the Summer. It is even more beautiful in the Summer. We did so much.

William had a blast fishing. He bought his rod with his winnings.

Emma had a blast fishing. She bought her rod with her winnings.

They did not catch a fish with their rods, but they did catch tadpoles with their hands.

We saw a growing volcano called the Valley of Fires. The kids enjoyed climbing on the burnt lava rock. This valley is the third youngest growing volcano.

My brother told the kids there was a black bear hanging out in the woods near his cabin. They watched for that bear every night. William spotted him on Saturday morning. He was playing outside and we heard him scream. The next thing we knew he was standing in the door saying, "I just saw the bear!". His face was so excited. It was pretty cool.

We went on a car ride to Billy the Kid Landmarks, which took us to Lincoln, NM where Billy the Kid was finally shot and killed. William liked this too. Harrison was not too impressed. He was asleep in the car. I am taking all of the photos, so I am not in any of them.

Harrison had fun playing in the mud!

My mom, Emma, William, Jeremy (brother), and Harrison.

William after he won his first $5 bucks.

Emma, Harrison and William

Jeremy, Emma and William cashing in again.

One of the horse races.

Harrison feeding himself applesauce. This is a new development (post pacemaker).

William and Emma drinking out of camping metal cups.

My brother, Jeremy and his fiance', Serena (on the right).
Serena's mother, Maurice and my mother, Sandy (on the left).


We had an old fashion gun show followed by a real cowboy camp out dinner.

Pacing right along...

Harrison had his pacemaker 6 week follow up today to check on everything. Since it was implanted on April 24, Harrison has gained 3.5 pounds and grew 2 inches. He is beginning to look 2.5 years old. Today he weighs 26 pounds and is 33 inches tall.

He did not like having the pacemaker checked. He screamed for a good 15 minutes while the nurses looked for the pacemaker with the little mouse. Apparently, H's pacemaker moved. It was located between muscles on his right side. In the past few days it must have slid down the muscle into his left side. I was unable to get any pictures of him. I was too busy singing to him to keep him calm. The nurses said I should get a job helping calm the children. They said most parents don't help calm their children. They expect the nurses to do it. I can't imagine! Those poor children. Harrison is the one going through all of this, I am just a bystander. The least I can do for my child is to help soothe him.

They did an x-ray to confirm the location of the pacemaker. They wanted to make sure the wires were not running out of length. We don't want those breaking, because then we'd be back in the OR. They want to see us in 4 weeks to check on the pacer's location. Except for that, everything else looks good. The pacer is pacing the bottom chambers at 100% and the top chambers at 15%.

On a lighter note, I have plantar fasciitis and early stages of hallus limitus. All on my right foot. Wow, does it hurt. Ah, the first signs of aging I guess!

Check out my Slide Show!

Transmission Day

We did it. It took some force to hold Harrison down, but we did our first pacemaker transmission today. He did not like being pinned down to get this done. Oh well, you gotta do what you gotta do.Here is Harrison getting ready to transmit his pacemaker activity. At this point he thinks he is just sitting in Daddy's lap.

Now he knows there was more going on. He does not like having to sit for this. My nephew, Owen, is in the background just watching. This only took less than 3 minutes. Every time he screamed his implant would move and we would loose its location. We would have to find it again and the recording would finish. After the recording was done H could go play. The box will automatically dial Medtronic. It works like a modem. Pretty cool! Of course, I don't advise anyone to go get one...it is not that cool.