2009 Pictures!

MERRY CHRISTMAS FROM THE HEARLZ

Well, I know that most of you that check Dani Jo's blog feel that we have fallen off the face of the earth...just know that No News has been Good News. Dani Jo is doing wonderful! She is such a miracle to our family. Not only is she walking everywhere...but she runs! She has the best personality and is so strong willed. She doesn't let anyone, or anything stand in her way of what she wants! She is so excited about Christmas, because she keeps opening all the presents under the tree...lolol I bet I have re-wrapped 10 gifts....

She is getting so big...in fact, Jamie will be 4 in March and weighs 24 lbs and Dani Jo weighs 21 lbs. She doesn't take anything off Jordan and Jamie. They try to bully her around, but usually I am having to get on to Dani Jo for bullying them around.

I am uploading some pics of Dani Jo and her sisters! By the way, I now have facebook and have connected with several moms of kids with her same syndrome. It is really exciting to see the other kids and the different things that other parents are doing. It is around midnight, so I better get some rest! God Bless you all this holiday season and keep praying for us and our family...for we are feeling the results of your words up to Heaven! MERRY CHRISTMAS!

SUMMER FUN!

Hope all is well with you all! We have definitely had a very busy summer. Joey and I have been working a lot of hours to end this school year. We are planning to go to the beach July 4th which is greatly needed! Of course, it is back to the drawing board for Joey and I when we return.

Dani Jo is doing fabulous! She only has had to go back to Brenners one time in a while. It was for dehydration from switching from formula to Nutrin Jr (kind of like pediasure) - this is formula that is ran in her feeding tube at night, however when we switched from one to the other, the amounts were not the same, therefore she got very dehydrated. She has done okay for the most part in the heat this summer. We are very cautious about letting her in the heat though because her heartrate seems to increase in the heat.

Jamie and Jordan are just as crazy as ever! We have really had a great few days off together. On Sundays they both have horse back riding lessons and they both love it so much! They were into gymnastics, but quickly wanted to start with horse lessons. Jordan finished up her Pre-k year at St Paul and is all ready for Kindergarten. Jamie will also start St Paul next year in the Head Start program as well. We are very excited about this! I know that Jordan will be much happier with her sister with her.

Jordan, Jamie, & Dani Jo are very close sisters and pretty much do everything together. In fact, they are all sleeping in the same room now. Hannah Montana - of course - who else is there. LOL! I am posting more pictures and hope that you enjoy them as much as we enjoy our beautiful girls. I know this summer is going to be so busy for us, but we will do our best to post as much as we possibly can! We love you all and hope that your summer is GREAT!

In Christ,

Amanda

18 Months Old TODAY!

Hi everyone! I hope you all didn't think we had given up on you all. Our lives have been so busy the past few months. We have dealt with a lot of sickness. We are well now. Thank God! Dani Jo is doing so awesome! She is crawling everywhere! She is into everything! She is also getting a little personality too. She has learned about 20 signs! We are so proud of our baby girl. I just can't get enough of her.

My God is so big! For so long I didn't understand, but I know that He has a perfect plan for her life! She is amazing! We are all learning signs and it is such a cool thing that our family shares! She is still getting Speech Therapy and we have picked up Occupational Therapy. She was doing so well in Physical Therapy that they discontinued it. YEA! I will try to post more tomorrow and get more pictures. I an off work tomorrow so I may have time to work on more pictures! Please remember us in prayer! We love you all very much! (She will be 2 years old in 6 months!!!) Can you believe that! Crazy huh!

Always,
Joey, Amanda, Jordan, Jamie, & Dani Jo!

Merry Christmas and Happy New Year!

Hi everyone,

Sorry it's been a while since we last updated our blog! This holiday has been extremely busy. It is about 11pm on Sunday night and I thought I would share my Christmas present with you all. As most of you all know-we haven't heard Dani Jo since she was about 3 weeks old and haven't heard her since. I have been praying to hear my little girl's voice. God answered my prayers for Christmas on Decemeber 7th. I hope that you all find as much joy in the video below as we did.

We mothers spend 90% of our time telling our children to "be quiet", "be still", "not so loud"...I don't do that as much as might have before. For 4 years I have taken for granted sound from my children...For 14 months we have not been able to hear sound from Dani Jo...So when we were finally able to hear her voice, we were overflowing with joy that could never be put into words.

Dani Jo has been my inspiration over the past year. I am a better mother because of her. She has taught me to love deeper, live life fuller, and never ever take for granted the precious things in life, no matter how big or small. A baby's cry has never sounded sweeter to me...a baby's coo never gave me the feeling that I feel when I hear Dani Jo.

Dani Jo would not be where she is now without your prayers and support. God has truly blessed us with 3 beautiful miracles. I used to go through the motions of being a mother before her, but I look at "motherhood" very different. There are a lot of women that long to have a child of their own and before I just took that for granted. I thank God everyday for making me a mom! If you are a parent, I encourage each of you to spend "valuable" time with them. I have started "hanging out" with my girls everyday. All they really want is for us to spend time with them and to be interested in them...they want to know they are appreciated, loved, and to listen to what they have to say. I have learned so much over the past year.

God allows things to happen in our lives so that we are humbled. I am humbled!

Well, it is almost midnight, but I wanted to give you all an update on our family. We love each of you and will post more later! May God bless you all this new year!

Thank you for your Prayers!

Dani Jo Halloween night!

Hello everyone,

We wanted to let everyone know that Dani Jo is doing great since she came home. We have been checking her sugar levels and for the most part they are running pretty normal. She is truly our miracle from God. She has grown so much over the past few months. It is truly amazing how she has grown...She has speech and physical therapy twice a week and is doing great! She is starting to rock back and forth on her hands and knees--a start to crawling...WOW are we ready for this...ventilator, pulse ox, and all dragging across the floor! A day we didn't ever think we would see in the beginning.


God has strengthened our faith over the past months...With God ALL things are possible! I count my blessings each day for my three beautiful miracles! I truly cherish each moment with them and capture every event and store them in mind. This keeps me going each day. If you have children don't push them aside, hold on to each moment and cherish your precious time with them. The laundry can wait, the cleaning can wait, the dishes will be there later! Take tonight to read just one more story or watch their favorite movie...ask them questions...listen...what's their favorite color, food, toy, get to know them while there young and hold on to these moments. Life is short, and we don't know what tomorrow holds. Don't have any regrets...teach, listen, learn, hug, love your children! And with this, go now and spend a little time with your little ones.

May God Bless You All,
Love, Amanda

Home Sweet Home

Our little baby girl came home this afternoon from the hospital. Drs never could determine what exactly caused the seizure, but she is home and doing well--watching cartoons in her bedroom right now.

Thank you all for your prayers. Thank you Jesus for answering prayers.

We love you all,
The Hearls

Good Day Today!

Dani Jo had a good day today. She has not had anymore seizures since the one yesterday. I just got home from hospital. Amanda is staying with her tonight. Dani Jo seemed like her normal, regular smiling, playful self tonight. Drs still don't have any definite idea as to why she had the seizure yesterday. They have been checking her blood sugar each hour, but it has been pretty normal.

Thank you so much for your prayers yesterday and today. Hopefully our family will all be back home together soon.

God bless you all.
Joey

Say a Prayer for Dani Jo

Hi Everyone. This is Aunt Jenn Jenn. I wanted to let you all know that Dani Jo had to go back to the hospital today. She had a seizure this afternoon at home. Joey called me around 2:30 and they were on the way to the hospital. They do not know what caused her to have the seizure. On the way to the hospital she seemed to be OK. I talked to Joey and Amanda around 7:30 and they had just gotten into a room and out of the emergency room. Dani Jo has been alert and smiling and seems to be fine now. They are running some tests on her to try to determine what caused the seizure. The doctors should be in tomorrow morning and will decide what to do. Please keep her in your prayers. Also remember Joey, Amanda, Jordan and Jamie in your prayers. Things like this are difficult for them, especially when they have to be separated from each other.

I posted a few pictures of Dani Jo from her birthday party last month. It is hard to believe she is a year old. She has grown so much. Thanks for all of your thoughts and prayers. When I find out something more tomorrow, I will be sure to let you all know.

Dani Jo's Turning 1!!!

Well as you can see from the pics below that our girls are getting big and growing up. I just wanted to send out a message to everyone a big THANK YOU for being such a blessing over the past year. Yes--it has been that long. Dani Jo will be 1 yr next Sunday! Only by the grace of God are we able to hold these precious miracles in our arms each day. This is truly what life is all about. Not about the clothes, cars, houses, money, who you are, or where you've been. It is truly about letting your light shine. Dani Jo is truly shining in the picture below. She is now sitting up all by herself now...most of the time she doesn't fall down! :)

I would love to send you all a personal invitation to Dani Jo's 1st Birthday, but I don't believe I would be able to get them all written in time. Consider this your personal invite to our home to truly celebrate the birth of this child. I tell my children on their birthdays more than just "Happy Birthday"...but I express to them that "I am glad you were born"! God has shown off over the past year and it is our turn to show off His little miracle!

Celebration will be Saturday - October 18 3-4:30pm - at Dani Jo's home in Cana VA - 336-830-5334 for directions (leave a message if no one answers).

We live about 6 miles past the NC/VA state line just past "Mountain Man" on the Right. If you are unsure where it is just call me and I will be happy to give you directions. I would love to see you all there. This celebration is going to be very special to us and would love to share it with the ones that helped us make it through this year!!! We love you all and hope to see you there.

LOOK WHO'S TURNING 1!!!

Thank You

Thank you all for praying our little girl home today. The drs. came and told Amanda this afternoon that Dani Jo was going home today. I know this is directly related to the prayers you all sent up for her. As you can see, she is sound asleep in her bed at home where she belongs. She has done well tonight, but is tired from her stay in the hospital.

Thank you all for your prayers.

Joey, Amanda, Jordan, Jamie, and Dani Jo

Update (Monday Night)

Dani Jo made some improvement today. The dr. came in this morning and was able to increase the size of the probe they were using to dilate/expand her colon. He was able to get up to a size 10. She needs to get to about 13 or 14 to be able to pass stool without any problems. They put her back on formula via the feeding tube this afternoon. She started at a very slow rate with hopes of increasing the rate over the next day or so. She had several visitors today, so she was pretty tired when Jordan, Jamie, and I left. Amanda is spending the night with her tonight. My wife is a real trooper. She often gets overlooked when Dani Jo is in the hospital but is faithful to stay by her side every single day.

We hope to all be back together at home by the end of the week. God bless you all.

Joey

Back in Hospital (August 31)

Dani Jo went back to Brenner's yesterday afternoon. She had not been eating well for a few days and her belly was beginning to swell a lot. They did some tests on her last night and discovered that she has what is called a "stricture." Basically what has happened is that when they reversed her colostomy in April, scar tissue has developed where her intestines were sewn together. This tissue has grown together to cause a narrowing and closing in her intestines. Her belly had become swollen because of a backup of gas and bowel movement. The drs. have made progress since she came in yesterday. They initially thought they may have to do surgery to open the stricture; however, the doctor this morning made great progress widening the stricture. She has had a very stressful morning while they attempt to widen the stricture. They take a metal probe and insert it several inches into her intestines rectally and gradually increase the size of the probe until the stricture is widened back to normal size. They are about half way to normal size right now, but can only do so much per day to prevent bleeding. The hope is that they will have it completed by Tuesday or Wednesday so that her bowels can function properly. That's about all we know right now. She is still doing well with her breathing, typically using the vent when sleeping only. She is growing up too fast. I can't believe she will be a year old in 6 weeks. She has learned how to sign "Mommy" and "Daddy" since she can't speak right now. There is nothing like hearing your little baby say "Daddy" for the first time; but I don't think anything could top seeing her sign it for the first time. Thank you all for your continued prayers for Dani Jo and our family. Hope to post more soon.

God bless you all,

Joey

Hello Everyone!

Pictures from Tony (my brother-in-law's birthday)

We have to say that the past month has been very busy for my family. Sorry for the long delay in updating our website.

Dani Jo is doing wonderful! She went for her follow-up swallow study and passed! This means we are now starting to give her baby food! YEA! She is doing really well with it so far. It is a slow process, but if she continues to do well with the food, then we will eventually be able to take her feeding tube completely out! It may be a few months, but we are slowly working on it.

We had to take all 3 girls to the doctor yesterday! WOW what an eventful day it was. Dani Jo has an abscess next to her feeding tube and it had to be cultured. We find out tomorrow the results of the test. We are praying that it is nothing. Jamie has been running a 102 temp for 2 days, had to take her to Dr., she has a virus. Jordan has been complaining of a tooth ache, took her to the dentist and they ended up pulling the tooth! It was an eventful day...I had to get a little strength from one of my sister's sayings, "This too shall pass". She always says this and I tease her about it, but I held on to it yesterday. Today is a new day! God is still in control.

God has shown off in Dani Jo since she came home from the hospital the day before Mother's Day. She gets PT and Speech often and has shown signs of improvement.

Dani Jo is 10 months old today--that is wild! I can't believe she will be a year old in 2 months! Time really flies by with your children, so stop and take time with them. Quality Time--I've learned that the cleaning, laundry, housework, etc... will still be there tomorrow, but our children grow up fast and it is worth it to me to spend a little extra time with my beautiful girls.

Please continue to keep us in your prayers and I will try to post soon! Love to you all!

Amanda

More Beach Pictures

Our First Family Vacation!

We just returned this past Saturday from a week at North Myrtle Beach. This was our first family vacation since Dani Jo was born. It was also Jamie's first trip to the beach. All of the girls (Amanda included) appeared to have a great time at the beach. Jordan and Jamie loved playing in the water and sand. Dani Jo did real well the entire trip. Strollers with ventilators don't push well through the beach sand, but we made it work. Everyone Dani Jo met seemed to fall in love with her. Dale, manager of the Dixie Stampede, was touched by Dani Jo. He brought several gifts up to our section for the girls and treated us like we were royalty. Thank you, Dale.

Dani Jo went to the her pediatrician today for her 9-month check-up. Yes, she will be 9 months old tomorrow. She got several shots, but didn't seemed to be bothered by them. She's lying on the blanket in the floor chewing on her pillow right now. She smiles all of the time. We sure do enjoy her smiles, especially since we can't hear her make any sounds right now. All of the girls are growing up too fast. Jordan starts Pre-K at the school next month.

I do apologize for not posting as often as some of you wish we would. I would say that I would start doing better, but those of you that know me wouldn't believe it. Thank you all for your continued prayers and support for Dani Jo and our family.

I did want to mention that a lady, Dana Willis, in our community is having a gospel singing, motorcyle ride benefit at the Lamsburg Ruritan Building here in Cana next Saturday, July 19. Amanda and the girls will all be there for the benefit. Sorry, I'm going to NY to see the Yankees play that weekend.

Well, I guess I've rambled enough for now. I'll close with some pics of us at the beach.

God bless you all.
Joey

What a Summer!!!

Greetings from the Hearls!

We have had a very eventful summer! Joey and I went to the CCHS conference in Florida--thanks to everyone that gave we were able to got to this conference and learn about new things on Dani Jo's disease. There was so much information to take in. We were able to see many kids that have CCHS from 2 years to 31 years. This was nice because it gave us hope that Dani Jo will lead a normal life. These teens were able to play sports, with many breaks; go out with friends; and lead normal lives except for knowing their limits. Most of their friends knew them and their condition and were able to tell them when it was time to slow down for a rest or take a few breaths.

Some of them had Trachs, pneumobelt, others were ventilated via bipap while they slept, and most had pacers. You all know about the trachs by reading our blog, the bipap or cpap is shown below. These are used on the less severe cases. If you look at the picture below you can see how it cups around the nose. Because some of the CCHS kids used these, there is a distinct impression on their faces. Below the bipap picture are some of the kids that used the bipap. You can see the impression on their faces. These teens used bipap early in life before the face is finished developing and because the face muscles were still growing the impression was caused. The look of some CCHS kids are only because they used the bipap, not from the disease itself.

BIPAP/CPAP
Teens at the conference!!!

A pneumobelt with a positive pressure respirator was used for sleep for three patients with chronic respiratory insufficiency secondary to syringomyelia, poliomyelitis, and Friedreich's ataxia respectively. This device was found to be effective in improving and maintaining their daily functioning in the community or institute.

Joey and I were most intrigued by the pneumo belt. This thing was the most promising without surgery! I have a picture of one of the girls at the conference that had this. All it was, was a belt that was connected around the abdomen/diaphragm and hooked to the ventilator! This belt as causes the diaphragm to contract therefore causing the patient to take a breath! This would not be available to Dani Jo until she is 4 or 5 at least.

Teen with pneumobelt

There is also the diaphragmatic pacer. Joey and I were very hesitant on this procedure. This has to do with making an internal incision just under the phrenic nerve and implanting the pacer with a transmitter. Dani Jo is able to come off the vent while awake, however if this nerve is damaged (which is a possibility) while Dani Jo would be ventilated 24/7 for the rest of her life. Just don't know if we want to take that chance. It is a very intense surgery!

We learned so much at this conference all because of you we were able to go! Thanks again for everything!

I will put some pics of other CCHS that were at the conference. It was nice to meet other families with Dani Jo disease--they all understood--and most of them had already been through what we are going through now, and were able to give us a light at the end of our tunnel. Thanks again for everything! Joey, Amanda, Jordan, Jamie, and Dani Jo

Another Update From Aunt JennJenn

Hi Everyone. This is Aunt JennJenn again. I would also like to say "Thanks" to everyone who came out to the benefit for Dani Jo. It was nice to see friends and family, see old faces and meet new ones. I am posting a few new pictures of Dani Jo and a couple of Jordan and Jamie. Dani Jo is doing really well and is always full of smiles. I would like to ask each of you to pray for Joey and Amanda to have a safe trip to Florida. They are leaving tomorrow morning to go to the CCHS conference. It is a yearly conference for families of CCHS patients. They will be able to meet parents of other CCHS kids and some of the kids will be there too. There will also be doctors giving presentations on new findings for CCHS. Joey and Amanda will come back with tons of information to share with all of us. They will return late Saturday night. Please continue to pray for all of them as we can never have too many prayers.

Benefit

Hello everyone,

As you can see our little Dani Jo isn't quite so little anymore. She is growing more and more everyday! Everyone was excited to visit with Dani Jo at the Benefit. It was very hot but she seemed to do pretty good. The benefit was very successful with the help of our special friends, Dickie, Jane and Whitney for heading the benefit. We would love to thank each one personally for your support. God has truly blessed our family by sending so many our way.

Your support and prayers are why Dani Jo is here today. God has answered our prayers and will continue as His will sees fit. I would love to start a list to thank each by name, but I know I would leave some out and as much as each of you mean to my family I wouldn't want to leave any of you out. We love each of you more than you will ever know.

The way God has reached down His strong and mighty hand over our family is beyond comprehension. He has protected and watched over our family daily and with your uplifting prayers, We Thank YOU!

Please enjoy some of the benefit pictures above....