Well, today was a lot harder of a day than yesterday, but it is over with. We went in this morning around 8:30 and began some tests (not sedated), the nurse couldn't find what she was looking for on the screen, so called the best Doctor on the machine and he still couldn't find his aortic arch! Matt and I try to tell her that it takes like two 90 degree turns, so eventually they listened and referred to the CT scan that we had sent them a few months back and then understood why they couldn't see it! Dylon was a trooper the whole time, just laying on his back for over an hour while they did the echo cardiogram, he never complained!!!! After that we waited in the lobby for 2 hours until we got to see his cardiologist Dr.Slesnick. We really liked the doc, and he was very good at explaining the situation. He explained that Dylon has a Double Aortic Arch with an atretic left arch and a vascular ring around his esophagus! Meaning.....
The heart in this defect has four chambers and four valves.
The big blood vessel that moves blood to the body (aorta) is normally one tube with small branches that take blood to the arms, head and neck before going to the lower body.
In this defect, the main aorta tube splits into large left and right branches before becoming one tube to go to the lower body. This branching pattern can cause the swallowing tube (esophagus) or breathing tube (trachea) to be pinched (compressed). A child may have difficulty swallowing solid foods or sometimes have difficulty breathing.
Many times a child is several years old before this is discovered.
This is a rare heart defect and can be fixed by surgery.
So after we began to understand all of this we were told that surgery will definetly be needed and that the surgeon will explain this better on Monday! He said that this is very rare and that probably only done a handful of these surgeries! I hoped that the surgery would be done like with a scope or something, but he said that they will open him up through the chest.
I am still absorbing all of this, this scares the mess out of me, my baby having to go through this and then I look around at other kids that have a type of cancer or disease that isn't treatable and thank God that Dylon's is treatable.... I'm still believing in a miracle and I know that God will and has come through for us!
But on another note, we had a blast at the ball park last night, they have a train that goes around the park if a home run is hit by the Astro's and luckily two or three were hit. At the end of the game fireworks shot out from the train to celebrate the victory, and Dylon got upset because he thought the train was broken, he kept saying "they broke the train" it was cute!
So we are done with testing for the week, and now all we have to do is see the surgeon on Monday! I will try and post something then to let everyone know!
God Bless
*Please continue to keep Dylon, Matt, and Shelli in your prayers. I'm still trying to wrap my head around all of this, but it is so overwhelming. I can't even imagine what it must be like for the parents. Shelli is right. It is a blessing that they have been dealt with something that is treatable. I'm now praying for the doctor's that will care for Dylon that God will give them the knowledge and the skill to do what is best.
Wednesday, July 30, 2008
Tuesday, July 29, 2008
Tuesday's News
Hey!
I just wanted to say that testing went pretty good today! They decided not to sedate him today, so that was a relief. We got an x-ray of his chest and then we did a barium swallow, that ended with more xrays. Dylon called them "camera's" and Mimi would be proud to know he did try to smile for the first few ;)! They are trying to see if there is a vascular ring around his esophaugus. I called to get our directions for tomorrows sedation and they to decided not to sedate him! I'm really really relieved of this! Hopefully he will cooperate as well tomorrow as he did today! So we are done for today besides going to an Astro's game....Ronald Mcdonald house is treating us to this! Ill do my best to keep you guys updated as much as possible!
God Bless
I just wanted to say that testing went pretty good today! They decided not to sedate him today, so that was a relief. We got an x-ray of his chest and then we did a barium swallow, that ended with more xrays. Dylon called them "camera's" and Mimi would be proud to know he did try to smile for the first few ;)! They are trying to see if there is a vascular ring around his esophaugus. I called to get our directions for tomorrows sedation and they to decided not to sedate him! I'm really really relieved of this! Hopefully he will cooperate as well tomorrow as he did today! So we are done for today besides going to an Astro's game....Ronald Mcdonald house is treating us to this! Ill do my best to keep you guys updated as much as possible!
God Bless
Monday, July 28, 2008
Dylon Update
I thought I would share this news from Shelli's blog:
I just wanted to give a short update on what we are doing, I guess I shoud've done this before we left!
We flew into Houston Texas today around 12:00 p.m., our flights were really good and Dylon became "pilot" Dylon today. For those of you who dont know Dylon can pretty much name any thing that flies, he's two and I dont know half the of the planes he knows. He did get to sit with the captain and recieve some wings, which was a really exciting time for him! We got the opportunity to stay at a Ronald Mcdonald house which has really been a blessing. Dylon can play with other kids his age and really get a special treatment, I am really amazed at all the activities that they have for him to do! I was really worried about him and afraid that he was gonna get lonely without his"Bubba", they did talk on the phone when we landed and they talked for 5 minutes about airplanes! *S* It was really sweet!
Tomorrow we start our testing and will have testing on most days of the week and will meet with the cardiologist one day and then on the last day that we are here, August 4, we will meet with the Chief Surgeon here, Dr. Charles Duncan Frasier and will discuss what needs to be done with Dylon! I am believing in a miracle!
Thanks for the emails and phone calls and prayers!
Much Love!
I just wanted to give a short update on what we are doing, I guess I shoud've done this before we left!
We flew into Houston Texas today around 12:00 p.m., our flights were really good and Dylon became "pilot" Dylon today. For those of you who dont know Dylon can pretty much name any thing that flies, he's two and I dont know half the of the planes he knows. He did get to sit with the captain and recieve some wings, which was a really exciting time for him! We got the opportunity to stay at a Ronald Mcdonald house which has really been a blessing. Dylon can play with other kids his age and really get a special treatment, I am really amazed at all the activities that they have for him to do! I was really worried about him and afraid that he was gonna get lonely without his"Bubba", they did talk on the phone when we landed and they talked for 5 minutes about airplanes! *S* It was really sweet!
Tomorrow we start our testing and will have testing on most days of the week and will meet with the cardiologist one day and then on the last day that we are here, August 4, we will meet with the Chief Surgeon here, Dr. Charles Duncan Frasier and will discuss what needs to be done with Dylon! I am believing in a miracle!
Thanks for the emails and phone calls and prayers!
Much Love!
Saturday, July 26, 2008
Prayer Request
I haven't shared this information with a lot of people, but because I do know the power of prayer, I would like each of you to remember Dylon this week. A couple of months ago both of the twins were extremely sick with a virus. Houston was sent by helicopter to Sacred Heart in Pensacola and a few days later Dylon had to be hospitalized in Andalusia. Most of the family came down with the virus as well. I stayed in the hospital with Dylon because I was the only person in the family that was not sick at the time. When the doctor came to check on him he told me he thought he heard a hurt murmur. He said you could hear them better when children are sick. The following week, Matt and Shelli were back at Sacred Heart seeing a specialist who at first thought Dylon had a coarctation of the aorta. Further testing ruled this out and they discovered that there is an abnormality with his left pulmonary aorta. As a result, his heart has a rare way of functioning.
Monday morning, Matt, Shelli, and Dylon will be flying to Houston, Texas to meet with an expert in the field, and Dylon will be enduring a week's worth of tests. It' s my understanding that he will be sedated for most of these tests, but the thought of him having to go through any of that breaks my heart. I love those boys so much. They were born into our family during one of the most difficult and trying times we have ever gone through. Their little lives gave us joy, hope, and peace during that time of sorrow and loss. The Lord welcomed home one of the most wonderful men on Earth that week. We see his smile on their faces and his swagger in their walk. I know Baw Baw will make sure God is looking after Dylon in the coming days, but it wouldn't hurt if you could lift him up in your prayers as well.
Monday morning, Matt, Shelli, and Dylon will be flying to Houston, Texas to meet with an expert in the field, and Dylon will be enduring a week's worth of tests. It' s my understanding that he will be sedated for most of these tests, but the thought of him having to go through any of that breaks my heart. I love those boys so much. They were born into our family during one of the most difficult and trying times we have ever gone through. Their little lives gave us joy, hope, and peace during that time of sorrow and loss. The Lord welcomed home one of the most wonderful men on Earth that week. We see his smile on their faces and his swagger in their walk. I know Baw Baw will make sure God is looking after Dylon in the coming days, but it wouldn't hurt if you could lift him up in your prayers as well.
Thursday, July 24, 2008
For John: News From Home
Okay Brother, after your comment on my last post, I got out the video camera and filmed two short videos of the twins. You won't believe how much they've grown and how much they can do now. The spend the night with me every Tuesday and this is the sight I get when they come. I don't have any real news that I can share with the "blog world", but I'll give you a call this weekend! Love you Brother!
Thursday, July 17, 2008
Magnolia Lane Collection
I've been in love with the Magnolia Lane Auburn pieces for quite some time, but wasn't aware of the photo frames they made. Tonight I went to my friend Patty's baby shower, and she received one of these. It's going to look so cute in their new house!
Wednesday, July 16, 2008
Castles and Crowns
My friend Jana is hostessing a Castles and Crowns party next week. If I had children of my own, I would probably spend my whole month's salary on this stuff. So cute!! You moms out there must check it out!!! Pumpkin Patch and Gone Bananas are my favorites.
Friday, July 11, 2008
The Morrow Kids
Yesterday, Ramsey's six-year old sister Sydny joined us for some summer fun. We spent the afternoon in the pool, and then Dave and I took them to see WALL-E last night. What a cute movie!! After the kids got their baths we had a few minutes to snap some pictures. I mainly wanted to share these photos so their mom, Stephanie who's in Texas, and their dad, Jeff in Iraq, could see that the kids are doing just fine!! They send their love and miss you both.
Our Summer Visitor
This is Ramsey. He's eight years old and has been staying with me since he was 4 months old. He's like a family member to us. Ramsey was the first person to start calling me Mimi. He started talking very early, and Mimi is what came out when he tried to say Mandi. Now my brothers and Dave pretty much call me Mimi all the time. He is extremely smart and constantly amazes us with all of his knowledge. He attends the "Cluster Class" at his school which I think is the same as the "TAG or Talented and Gifted" classes we have here. For the past 3 years, his family has been stationed at Fort Hood in Killeen, Texas, and I have misssed him oh so much!! I now look forward to Christmas and the few weeks in the summer, when I get to spend some time with him. Dave and I hope our own kids are as smart and well-behaved as Ramsey.
Tuesday, July 8, 2008
Laeton Reid
It aint easy competing for attention with Dylon and Houston, but Laeton Reid gives them a run for their money. What a sweet baby he is! There is always a smile on his face. He's 9 months old now, and we attended his baby dedication this past Sunday. Needless to say, we are so happy that Matt and Shelli are raising their boys in a Christian home.
Saturday, July 5, 2008
YUMMY!!
Well, the Grinch changed his mind about working all day yesterday. I think my blog may have influenced his decision:) So instead, I made a Cornbread Salad and a Flag Cake, we loaded up our puppy, and headed to the river. We enjoyed a delicious cookout with the DuBose/Harper families. Last night we took the boats out and watched an amazing fireworks show, then cruised up and down the lake listening to some of Marrianne's favorite songs while JH entertained us with his dance moves. I didn't get any pictures. Dave was terrified of the thought of taking our camera out on the water. It was a lot of fun, and we are looking forward to another fireworks show tonight!
I've seen photos of cakes like this in magazines for years, and have always said, "One day I'm gonna make that." I finally decided to try it yesterday. It was easy and delicious!! The kids at the river deemed it "best cake ever!" Sorry daddy, there was none left, but I'll be glad to make you one when you and mother get back from Nebraska!!
I've seen photos of cakes like this in magazines for years, and have always said, "One day I'm gonna make that." I finally decided to try it yesterday. It was easy and delicious!! The kids at the river deemed it "best cake ever!" Sorry daddy, there was none left, but I'll be glad to make you one when you and mother get back from Nebraska!!
Thursday, July 3, 2008
Happy Independence Day!
Tuesday, July 1, 2008
Beach Wedding
Dave's step-brother, Ricky, got married on the beach this past Saturday. It was a beautiful wedding, and we are very happy for Ricky and Lynn. We were looking forward to laying on the beach all day Sunday and reading our books, but we woke up to thunderstorms. So we drove around and looked at furniture instead. It was a quick get away, but I enjoyed spending the time with Dave. It seems like the only thing I've done all summer is go to class and study. Here are some pretty entertaining photos for your viewing pleasure!
The next two photos were made by Dave's father:
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