Hartgraves Family

Summer Update

2009-09-07T22:17:00.001-05:00

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

2009-08-21T09:25:00.002-05:00

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!

2009-02-11T16:20:00.002-06:00

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!!!

2008-12-10T20:50:00.002-06:00

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

2008-11-17T17:07:00.002-06:00

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

2008-11-16T10:06:00.002-06:00

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!

2008-11-09T09:21:00.003-06:00

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!

2008-10-02T21:11:00.003-05:00

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

2008-09-02T18:05:00.003-05:00

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...

2008-08-23T16:44:00.005-05:00

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

2008-08-06T20:36:00.002-05:00

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

2008-08-04T21:12:00.002-05:00

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

2008-08-03T20:27:00.004-05:00

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

2008-08-01T15:40:00.003-05:00

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

2008-07-30T12:20:00.001-05:00

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

Update

2008-07-29T19:38:00.002-05:00

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

2008-06-25T19:50:00.009-05:00

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...

2008-06-17T18:00:00.002-05:00

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!

2008-05-27T12:27:00.001-05:00

Transmission Day

2008-05-27T12:12:00.002-05:00

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.

2 Pounds in 3 and a half weeks...

2008-05-23T11:59:00.002-05:00

We saw cardiology and Harrison has gained 2 pounds since he got his new lease on life, aka pacemaker. He is growing out of his 6/9 month shorts. He does have a mild flow obstruction from his LVOTO, so now we have to see Dr. Siu twice a year instead of once a year. If obstruction changes he'll have to have another heart surgery.

Until then he is doing amazing. He is still fussy and whinny, but he is 2 and a half. He has so much energy. He is learning to climb on things and loves to run down the hallway. We will upload his pacemaker for the first time on the 27th. This will be interesting to learn.

Mom, dad, and older brother are going on a trip in July without Harrison. We are going to Cozumel to an all inclusive resort. They have children activities for 4 and up, so Harrison is going to hang out with Nana while we are gone. We are so excited. I think William will enjoy the trip. We have never gone on a trip without H, so this will be interesting.

Thanks for all of the prayers. If I don't post, it just means we are so busy. School is out on June 6th, ah... no more lunches to make.

What a cute baby!

2008-04-24T22:20:00.002-05:00

"What a sweet boy" and "What a cute baby". These are so nice to hear while staying at the hospital. He slowly getting back his personality. Harrison just loves frogs. His Nana gave him this one. He has a really big frog at home.
This is what he looked like when I left the hospital tonight. Boomer is sleeping with Harrison tonight and I am sleeping with William at home. Yeah, my own bed and shower.

Post Surgery

2008-04-24T22:10:00.003-05:00

Here is Harrison sleeping comfortably after his Pacemaker was placed. Everything went by so quick I still can't believe all of this has happened. We had no idea. We were just cruising along on cruise control and bump.
I didn't get a picture of his heart rate prior to surgery, but I believe the lowest was 40. As you can see, in the photo, it has almost tripled here. This was after the Pacemaker. Now, he is running around 120 to 140.

Harrison in Heart Block?

2008-04-24T22:03:00.003-05:00

Harrison hanging out in his room early Wednesday. He was having fun. Does he look like someone suffering from complete A/V heart block?

Here he is again. Just having a good time. He just thinks he is in a new location for a play date.

Robotic Harrison

2008-04-23T17:43:00.002-05:00

Well, the decision was made around lunch time when Harrison went into complete electrical heart block. His rate dropped too low and wasn't going back up. He was taken to surgery around 1:45 and went back to PICU around 5:30. They rolled him down the hall so we could see him and his heart rate read 80bpm. It was so amazing seeing such a high number. I can't believe my son was showing signs of low heart rate and I had no idea. Thank god I called on Monday. What a rollercoaster ride that I really didn't plan on buying a ticket for. The good news is I found out Fort Worth has a CHD support group.

It's Not the Thyroid...

2008-04-23T11:17:00.001-05:00

The good news is H doesn't have to take synthroid everyday for the rest of his life. The bad news a Pacemaker theory is still in the running. Pray for quick and accurate decisions.

Hospital...

2008-04-22T19:42:00.003-05:00

Okay, so Dr. Sui's nurse called me this morning and had us come by after preschool for an out patient EKG and a 24 hour monitor. While there, his EKG didn't look great. Nurse Melinda said she would show Dr. Sui and she would call me this afternoon.

Before I got the car started the EKG Tech came out and told me to come back in and wait. Melinda came and told me she couldn't let us leave until Dr. Sui looked at the EKG.

Long story short, we are in the hospital for a 24 hour survelience. They believe H has a block causing the low heart rate. I asked the heart monitor tech on the floor for the average heart rate for a child his age. He said between 100 and 180. Well, H had a 74 while screaming during the blood draw. While playing his is a mere high 40 low 50.

The doctors will decide if he needs a pacemaker in a few days. The chances of this happening are pretty high. The only other possibility for a low heart rate could be a low thyroid function. Pray for a low thyroid function. Oh well, thank god we had the MRI.

I can't post photos since I don't have my camera. I'll keep the blog posted as updates come in. H is reading a book with Nana, so I better go check on them and his 8:00 meds.

Pray.

No Tethered Cord

2008-04-21T13:05:00.002-05:00

The great news is the MRI results came back and there is no tethered cord with his sacral dimple. However, while we were there the pulse ox was reading a slow heart rate. Before they took him his rate fluctuated between 45 and 50. In recovery, it was between 55 and 60. Nurses kept asking if a slow heart rate is normal for Harrison. I have no idea. After surgery 2.5 years ago he struggled with proving he didn't need a pacemaker and finally won that battle and didn't need one. Now, I have no idea. The pediatrician doesn't check this at all. I am waiting for Dr. Sui's nurse to call me back. I am worried. His rate shouldn't be this low. I keep the blog posted as I hear.

Speech just left and we worked on a structured play game teaching H the signs for ball and bubbles. Overall, he tolerated this well. He is asleep now.

Pneumonia

2008-04-14T13:37:00.000-05:00

It is not Harrison! Our 7 year old has asthma and he had a flare up last night. This Spring is killing him with his asthma. I guess the mucous was too much and he has pneumonia brewing in his lungs. The white count was over double the normal range and the x-ray shows a triangular pocket of fluid behind the heart. He is home after getting an injection of antibiotics. He will do oral antibiotics for 10 days. Pray for a quick recovery for him. Harrison is in perfect health, believe it or not!!!

So Much Going on...

2008-04-13T22:43:00.000-05:00

I have slacked big time with this blog. We have had so much going on since my last post. I'll start with March 7.

Harrison got put on a really strong antibiotic for his chronic ear infections. Three weeks on Cipro found us having very bad diapers. He went from the constipation extreme to the opposite extreme.

We went to San Antonio for a few days during Spring Break. We had a blast. We took the kids to Sea World and The Alamo. We walked the river each day and had a river boat tour one night. I will post pictures later. We all fed dolphins, which was really cool.

We got a dog. We have had her for a week. We adopted her and changed her name to Bella. She is part Collie and part Standard Poodle. She is the best dog. She will be one in July.

Harrison is still receiving physical, speech, and developmental services in our home. His new visitor is a Behavioral Therapist. She is going to begin a very structured program for him to help improve his play behavior. In addition, she will introduce a picture system with him. Hopefully this will help him develop some speech and improve his sign language. He has yet to say many words. The program she is trying on him is used for autistic children. She has not formally tested H for autism, but she does see some behavioral tendencies that he displays.

Harrison was tested for allergies and thank goodness he is not allergic to dairy. He had some minor reactions, but nothing to be alarmed about. William goes tomorrow for his testing.

Harrison has an MRI on Thursday. They are checking his Sacral dimple. They want to make sure he doesn't have a tethered cord. I am sure everything will come back fine.

Harrison got weighed by the dietitian last week. He weighed 23 pounds and 11 ounces. Yeah!

Easter was a great day. Everyone was well. We had the family over for lunch. My niece had strep throat, so we canceled the easter egg hunt. William was disappointed, but Harrison didn't have a clue.

I think this is it. As for me, I have been stressed out over Harrison's development and eating. We decided not to worry anymore on his eating. He is gaining some weight and continuing to grow slowly, and we're fine with that. Some meals he eats and some he does not. I can't stress over that anymore. I am spending so much energy stressing over his lack of play and verbal communication that I am exhausted. I am going to pray for God to take care of this now.

There is a toddler that I follow via his blog. This little boy needs prayers. He is scheduled to have surgery on Tuesday and he has been sick the past month with the stupid cold/flu. These heart kids can't just get the 10 day common cold like everyone else. Theirs usually seem to last forever. Anyway, please pray for Elijah. He needs to get rid of this cold, so Dr. Moga can repair his heart. It is ready! We have never met Elijah. He shares the same surgeon as Harrison, and goes to the same Cardiology office that we went to. He is in good hands!

I will add some pictures soon. I think this is a somewhat slow week coming up.

Snow in March

2008-03-07T20:13:00.000-06:00

We got a bit of a surprise yesterday after school. It snowed! Not much at all. More like a dusting. The kids still had a great time playing! I have not seen William this excited in a long time. It sure made us miss Minnesota snow. Enjoy my condensed video of him playing. I will give an update on Harrison in a few days. I have a migraine and there is a lot to update.

It is just the flu...why do I get so scared!

2008-02-24T00:04:00.000-06:00

Well, H woke up this morning happy at 6:30 am. We watched an early movie and I took William to his basketball game. I called at 9:30 to let Boomer know we were on our way home. He said he put H down for a nap, because he was laying on the floor. I got home around 9:45 and checked on H. My poor baby. He was laying in his bed next the red throw up. Red all over his white bumper pad. Oh well, at least it smelled like strawberries. He has been sleeping all day. I had my EMT/Fire Fighter neighbor come and check his breathing. I have been starring at his feet all day, because his toe nails appeared blue to me. I think I am paranoid. He just got up about half an hour ago and had water and Tylenol. He went back to sleep. But before I put him down I checked his feet. They are freezing. How can he have over 102 fever and have ice cold feet? He is wearing socks! This is when I don't like the experience we have gone through with him. H can't get the common flu without me fearing that his repair is failing. I don't like this feeling. I hope H has a better day tomorrow.

We did get his annual development evaluation back. He is currently 27 months old. He weighs 231bs and 10 ozs. He scored at 21 months for gross motor, 18 months for fine motor, 19 months for adaptive (feeding and dressing), 16 months for social, and 13 months for speech. We are thrilled with these scores. A year ago he wasn't even scoring 12 months in any of the areas, so this is a huge accomplishment for him. He has worked extremely hard for this, as have all of us. I will take some credit for his progress too.

Ears, Ears, Ears!!!

2008-02-13T20:06:00.000-06:00

Harrison is going to see the ENT tomorrow. While he was being casted for his new braces today I noticed he had some fluid plugs blocking his ears. Sure enough, there is fluid draining from his ears. Poor kid...will he ever get relief?

Update on William

2008-02-11T19:53:00.001-06:00

These are some great neighbors from St. Michael, MN...when we lived there. This is the pond in our backyard. We miss it there!
There is William in the silver jacket. This was his first time on skates. Boy, do we miss our little ice pond. We sure don't have that in Texas!

Cameron, Jaeger and William after ice skating!

Another great picture of the boys.

William did a great job out on the ice his first time. He loved it.

William is almost finished with basketball. He has a few more games. He just signed up for baseball and has a little tryout on Wednesday night. He is excited to learn how to play baseball. He is also eager for summer. He keeps thinking about our annual trip to the beach. I hope he can focus on his grades for a few more months. He is doing great and growing like a weed. There is nothing wrong with his appetite.

Update

2008-02-11T19:40:00.000-06:00

Harrison is not eating much right now. We are not really sure why and we are not as worried as last week. There is really only so much I can do to make him eat. What he is eating he is also keeping the food in his mouth...gross! The dietitian came last week and weighed H, he weighed 22lbs 11ozs. In December, she weighed him and he weighed 23 lbs. On January 16th he weighed 24lbs. So, he lost a little.

As for his ears, we are to continue drops every 3 days. This is not a fun task. I have to pin him down and listen to him scream bloody murder. I feel so bad for doing it to him. This is probably the hardest thing in 2 years. He took 9 medications 24 different times a day for 6 months, 5 medications for the other 6 months, but all of that was through the feeding tube. When he was down to 3 medications twice a day we had the tube removed. He takes all of this by mouth with ZERO fight! Ear drops are another story.

Hopefully, this treatment will work. If not, back to the ENT and Infectious Disease Doctor.

Wednesday we go to Hanger to be fitted with new feet braces. They want to go taller. He is losing balance quite a bit and falling, so the PT thinks that he needs AFO's instead of SMO's. AFO stands for Ankle Foot Orthotics.

The next specialist we see is Genetics, in March. Maybe she can shed some light on eating, walking, talking and ears.

We think H has 2 words: No and Mine...they don't sound like the words, but we think he says them. He did the sign for help today and I was so excited. It is not exactly, but he knows what he is doing. He looks at a picture of a ball and does the ball sign. And of course, MORE has become his universal sign for anything and everything.

H got his hair cut and I will try and post a picture soon.

Just Photos

2008-02-11T19:32:00.001-06:00

He is due anytime!!! Just kidding. This is what chronic constipation does to your belly. He does look cool with his shades on though.

I just love this photo. I walked in and saw him like this. The yellow thing is one of those hands you wear at football games. He has it between his legs. Thankfully it was facing this direction. I imagine it would have been hilarious if it was facing the other direction.

The Never Ending Ear Drops!

2008-02-03T12:37:00.000-06:00

We just don't know what to do! Harrison didn't seem himself yesterday and we thought he was just tired. No!!! He woke up from his nap with a molasseses looking fluid draining from his left ear. Ear drops were called in. When I went to pick them up my sister said it was coming out of the right ear too! Can H ever be free of these STUPID ear infections?

So, here we are on another 5 day adventure with fighting with H to get these ear drops into his ears. I feel so sorry for him. There is nothing I can do for him. I just hope he grows out of this soon.

Lunch is here, I'll write more later.

What Does My Handwriting Say About Me?

2008-02-03T12:28:00.001-06:00

What Your Handwriting Says About You

You are a fairly energetic person. You know how do pace yourself, and you deal well with stress.

You range from very outgoing to very shy. You are a shapeshifter who is very versatile. You adapt well, and you look at things from many angles.

You are balanced and grounded. You know how to get along well with others.

You need a bit of space in your life, but you're not a recluse. You expect people to give you a small amount of privacy, and you respect their privacy as well.

You are somewhat traditional, but you are also open to change. You listen to your head and your heart.

You are a decent communicator. You eventually get your point across, but sometimes you leave things a bit ambiguous.

http://www.blogthings.com/whatdoesyourhandwritingsayaboutyouquiz/

Dodging A Bullet!

2008-01-17T10:41:00.000-06:00

Harrison had his little surgery yesterday. He is home and doing pretty good. He is happy!

Yesterday, Dr. Fewins had to remove Harrison's ear tubes. They had become infected and was causing blood drainage and irritation. He inserted new tubes made out of Titanium. He also decided it would be best to remove H's adenoids. He explained the benefits of this and Boomer and I agreed. He also checked his vocal cord paralysis and it shows no improvements there. He was happy with how well the right one was compensating.

This is what we learned after surgery...

Infections did not cause any damage to middle ears
Left ear was full on dry blood, so going with surgery was the right choice
No change with his left cord. It is what it is...paralyzed. He should be fine. It will be watched as he grows.
Adenoids gone. They were actually shaped differently than typical adenoids. Probably due to his facial features that go along with q22 deletion.
ABR Hearing Test came back normal. I was just told that she and Dr. Fewins were surprised that was no hearing loss. With development problems to the semicircular canals they usually see some hearing loss. This is the bullet we dodged! Praise the lord.

She said that we should get his hearing checked once a year if he continues to have inections. The anatomy of his ear will not change his hearing. The only thing that could effect his hearing would be damage from ear infections. Heart wise, everything checked out. He does have a low heart rate, but it is probably due to his repairs.

Thanks for the continued prayers. In additon, I have received my unofficial scores for my teaching certificate. I passed my content test!

Prayers in Need

2008-01-14T07:23:00.000-06:00

This is going to be a long week. Harrison is scheduled for surgery on Wednesday, January 16. We won't know the time until his pre-op tomorrow. As many of you know, Harrison had ear tubes placed in May.

Well, since then he has had numerous infections that have taken 2-3 rounds of antibiotics. This most recent bilateral infection caused his left ear to drain blood. His ENT is removing the original tubes, cleaning out the infections, and inserting a second set of tubes (made out of Titanium). In addition, Harrison is having a Larynoscopy, the ENT inserts a magnifying tube in his airway to look at his trachea and his vocal cords. He has a paralyzed cord from his heart surgery and we want the doctor to take a look at it. We figure since he is asleep it would be a prime opportunity. They are also going to perform an ABR hearing test while he sedated. This is because he has underdeveloped inner ears. This is a very fancy hearing test using brain waves.

So, we are asking for prayers again. Also, I am taking my teaching test today. Please pray for a passing grade. I am getting my alternative teaching certificate and this test is very important.

I will update later in the week with Harrison's progress. He is on steroids right now, because he was getting a cough. We don't want to have to cancel the surgery. His ears are really making him FUSSY!

Check out my Slide Show!

2008-01-02T22:35:00.001-06:00

Christmas 2007

2008-01-02T20:20:00.000-06:00

Harrison and William had a wonderful Christmas! We celebrated Christmas Eve and Christmas Day in our first home in Texas. This was truly an unforgettable Christmas. We attended University Christian Church's family Christmas Eve Service. William enjoyed the children's sermon, while Boomer and I took turns taking Harrison out of the sanctuary.

We had dinner for our 9th year, or so, at Charleston's. We shared chicken and ribs with a smothered French fry appetizer. William ordered a grilled cheese sandwich. Harrison ate ice cream and then fell asleep in Daddy's arms.

We went home and opened our annual Christmas Eve pajamas, got ready for bed, and William read Twas the Night Before Christmas. This was his first year to read the story to us. Harrison slept through everything. Even pictures!

Christmas Day was a blast. My grandmother stopped by later in the evening and we all sang Christmas Carols to her. It was bittersweet, as she didn't remember some of us. She had a good time.

I am trying out my new camera and am posting a short video of Harrison riding his choo choo train. A few of us have been sick, so I will post more at a later time.

And, he walks!

2007-12-01T20:00:00.000-06:00

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!

2007-10-24T20:42:00.000-05:00

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

2007-08-11T16:26:00.001-05:00

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

2007-08-07T15:55:00.000-05:00

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

2007-08-05T10:16:00.000-05:00

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

2007-07-13T22:04:00.000-05:00

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

2007-07-11T18:50:00.000-05:00

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

2007-07-11T12:35:00.001-05:00

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

2007-07-11T07:57:00.001-05:00

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.

2007-07-11T07:54:00.001-05:00

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

Pictures

2007-06-23T12:31:00.000-05:00

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...

2007-06-07T21:33:00.000-05:00

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.