And, he walks!

It is official, Harrison is walking. He started walking just before he turned 2. His birthday was November 8, and he started walking around the 2nd of November.

He had his 2 year well visit, and he is finally on the growth chart. He is in the lower 5th percentile for everything. Dr. Murchison is very pleased with his growth. Now that he has been standing, his thighs are becoming big. He is starting to fill out. I love it. He can finally wear the jeans my sister got him last year for Christmas...size 12 months. No more 9 month old clothes!

As for talking, he is speechless. Now Dr. M wants us to request more speech through ECI. Harrison is going to have speech come 2 times a month and have Developmental Services come 2 times a month, for a total of 4 times. They will work on oral motor, speech, and sign language. So far he knows more, milk, please, eat, and ball for signs. We are working on mommy, daddy, and thank you. He can even sign in sentences; combining more milk please. It is really sweet. PT still comes out 2 times a month and dietitian comes every other month. His OT quit, so we are waiting for another one.

He is so much fun to have around. We are so blessed. He finally got over his cold and now has a double ear infection. We thought the ear tubes would prevent the infections, but no luck. The tubes are allowing the nasty fluid to drain out though, which is good. So, he is on another round of antibiotics. He is still taking his calcium, calcitriole, and Keppra medicine. And, we are still battling the constipation issue. Time will tell! (Our favorite words) He has check ups with Infectious Disease, Genetics, Neurologist, and Ophthalmologist doctors coming up. We will post updates as we get them.

Christmas is going to be so much fun this year. Harrison is getting a tickle me Elmo. The toy has already been test driven and he loves it. Christmas is great at this age. They can try out the toy and have no idea that Santa didn't make it.

William wants a lot of things. Not sure what we will decide on. The normal stuff for a 7 year old...movies, PS2 games, Star Wars, books, board games, etc.

I am having a delay in uploading pictures, so I will get new ones posted soon.

Just A Back Up!

The results are in. Harrison does have hydronephrosis; however, it is not due to renal reflux. We are thankful for this, considering he only has one kidney. We don't have to fix it with surgery. It is caused by one of two things, or both. First of all, he has low muscle tone in his abdomen. This is to be expected with all of his other issues. In combination with the low muscle tone he is also seriously constipated. We thought he was passed this since he goes everyday. Apparently, this has no bearing on whether or not one is constipated.

So, what do we do? Well, we give H the myralax for his back up problem. Milk and Molasses enemas have been highly suggested too. (Not too sure about this one) At some point I wish I could draw the line, but since he is my baby I will abide by the doctor's orders. Also, we will get the PT to work on some abdomen exercises. The nephrologist did feel that this is why his belly is so big.

On a lighter note:
H is still working on walking. He loves to walk around the rooms while holding onto walls or furniture. He took about 10 steps on his own today at the church. He weighs about 22 pounds, I think 22lbs and 4 ounces. He is turning 2 in exactly 2 weeks. He loves to wave bye bye and blow kisses. He still says mamamamam for everything...even Boomer! He loves to laugh and really enjoys playing with his cousin, Owen.

Speech Therapy

Harrison had his Speech Evaluation last week. He seems to be around 7 months old for communicating his needs and around 12 months old for understanding others communication. I think the 7 month is an undershot as to where he really is. In the past few days he has really started whining and getting frustrated easily with us. Probably because we don't understand his needs or wants. Overall, he seems to be around 10 to 12 months developmentally. He is 21 months old.

I told Boomer, my husband, that I am tired of having a "baby". I am ready for a toddler. How long will this stage last? This is how I am feeling today. I know how hard he is working...we all are. You know, when you want to have a baby you just want a healthy baby. I have a nephew who is 5 weeks younger than Harrison and sometimes it is difficult to watch them together. I help out teaching in a toddler preschool class during the school year. I go back on the 27th of August. This year is going to be tough for me personally. Harrison is old enough to be enrolled in that class but is not because of his development. It will be difficult emotionally for me see all the different toddlers interact. Mothers of children without "developmental issues" tell me to stop worrying, he is doing great! They are right, he is doing tremendously well considering what he has been through. I just don't think people really understand how draining it is to experience something like this. Well, that is enough of my pitty party! Most days I thoroughly enjoy having a 21 month old baby who weighs 20 lbs. and 12 ounces. If he can't walk at least he is lite for his age. haha

Normal Immune System

Well, I got the best call today. Harrison's Infectious Disease doctor called me today with Harrison's latest lab results. I will be honest, I was pretty nervous to hear from the doctor. The last doctor to call us was William's Neurologist, and he was calling to tell us the MRI results on his head. That phone call referred us to a Neurosurgeon. It is my experience that doctors only call with bad news.

Not this call! Dr. Mazade wanted to inform us that Harrison's immune system appeared to be in normal range. Thank God! We are finally seeing a small glimpse of a light. Dr. Mazade said he could have his live vaccines. I am so pumped that I already have Harrison scheduled for shots tomorrow at 8 am. I am usually scared on shot days, but not this time. Hopefully he won't get sick.

We are very happy at our house today.

Start! Heart Walk Kick Off

Despite the humidity and heat levels, we had a great time at the Start! Heart Walk Kick Off party on July 17, 2007. We heard a lot of inspirational stories and had fun sharing Harrison's survival story. My sister took this picture of Harrison after the event was over. As usual, he was a champ! He was so hot and got fussy towards the end. Believe it or not, he lasted over an hour outside. After an hour and a half I found my mother, sister, William and Harrison at a table inside the air conditioned restaurant. Harrison was sleeping in his Nana's arms. After this event the family headed down south to South Padre Island for our annual family vacation. Look for a post on this in a few days, or so. Still need to get the pictures off my husband, Boomer's, laptop.

Latest on Therapy

Harrison had OT yesterday. She is pleased with his progress. Rachel wants us to continue stretching his right wrist and forearm. His shoulder is feeling looser, but his right side is still a bit tight. That therapy ended at 11:00 and his next one was at noon.

The noon therapy was supposed to be a lunch therapy with his speech therapist and his dietitian. Well, he was so tired he did not eat much at all. They watched what he did eat and made some recommendations. We need to get him to bite on his sides, especially his right side. He was weighed and measured. He gained 4 ounces this month, so he weighs a whopping 20lbs. 9oz. and his length was the same as last month; 29 5/8 inches. So, basically he is still on his own growth line, which is below 0% for everything. In fact, he dropped a tiny bit off of his line but they are not worried.

He will have a speech evaluation next month and a 6 month reevaluation too. He has come a long way since we moved back home to Texas. He ended his therapy in Minnesota at 8 months old and all he could do was roll from back to tummy and vomiting after almost every meal . He started therapy in Texas in October, 11 months old, and all he could do was roll from back to tummy and tummy to back and drink 16 ounces a day. Now, at 20 months old he can crawl, pull to a stand, cruise around furniture, walk with a walker toy, wave bye bye, say mamama (for everything), and bark like a dog. As for nutrition, he finally could eat baby food in November and now he can eat stage 3 baby food without vomiting from choking. The nutritionist says he has come a long way, especially since he doesn't choke and throw up now. It seems like years ago that he was constantly throwing up during or after his meals, and really it has only been a little over 6 months. Thank God! Most of this, with the exception of crawling, has happened this week. Boy, he has been a busy little bee this summer!

TEAM HARRISON

We have created a walking team for the American Heart Association Start! Heart Walk in September. The team is TEAM HARRISON. You can visit our team page at www.heartwalk.kintera.org and type in the team name. You may also read Harrison's journey story at www.caringbridge.org and type in harrisondeanhartgraves.

We currently have 7 walkers signed up. Our goal is to raise $5,000 for research and education for heart disease and stroke.

As a survivor, we have been invited to the kick off party to tell Harrison's story. We are so excited to finally be giving back for all of the blessings we have been given through this journey. Harrison's triumph over his rough start gives me the inspiration to make this years walk very successful. Look for TEAM HARRISON every year.

William Brice Hartgraves

This is William and he is currently 6 years old. He will begin First Grade in August. He enjoys reading, playing with his toys, swimming, and Star Wars.

This summer he has participated in Music and Art Camp at First Presbyterian Church, VBS at UCC, and is taking swimming lessons. He can't wait for our family trip to South Padre.

He is big brother to Harrison, who is 20 months old.

Harrison Dean Hartgraves

This is Harrison. He had open heart surgery when he was 9 days old. He is currently 20 months old.

He loves to play with his toys. He enjoys listening to the sounds they make when he drops them on hard surfaces. He just walked behind his walker on July 9. He waved bye bye and hi for the first time yesterday. He says mama, but it is for everything. He can point to his belly and he can bark like a dog on command. He has PT, OT, Developmental Services, Dietitian, and Speech Therapists visit him at home each week. Most of the time he enjoys it.

He loves taking baths and playing in the water. He really likes it when his big brother, William, joins him in the tub.

He is going to the beach for his first time this summer. He is going to really enjoy it.

This is Harrison in November, 2005. This is one of the first photos taken after his heart repair.

Pictures

As soon as I can get my card reader hooked up to the computer I will upload some photos of my boys. My oldest boy, William, is 6.5 and just finished kindergarten. Harrison, my youngest, is 19 months old and crawling all over the place. He is learning to pull to a stand and his ankle foot braces seem to be helping him. It should be no time and he will be walking all over the place.

Trying something new...

This is my first time to be a "blogger". I thought this would be a great way to let friends and family see what we are up to and how we are growing. It also keeps me, Tiffany, busy. As if I don't have enough to do with 2 boys at home for 12 long weeks. Did I mention they would be home for 12 long weeks.