Wednesday, February 25, 2009
The May family received news Monday that there is nothing further the doctors, nurses, etc, can do to keep Caleb alive. He is living on machines and medicines, he is in kidney failure, and has extensive brain damage. Ironically, his heart is doing well after having the Norwood procedure. I am uncertain of what has been done this far, but I know that his parents will be or already have made a decision unimaginable to all of us. It would be so kind of you to leave an encouraging word on his site. www.caringbridge.org/visit/calebmay
Also, I am in shock because I just read Baby Maverick's blog and he died yesterday (Tuesday) morning. If you go to http://babymaverick.blogspot.com/ you can read about him and maybe leave an encouraging word for his family.
I realize this is so much to handle, but please pray for these families. Now that our family is a part of the CHD Community, it's not just about Jameson, but so many other little lives too. There are so many blessings involved and so many tears, I just never realized it would be this many tears.
Friday, February 13, 2009
"Hi Kellie, Yes, my son was born with a heart defect. He has Hypoplastic Left Heart. He’ll turn 19 this May, and is in his second semester at University of Arizona. He’s studying Pre-Med. If you looked at him he looks totally normal. He visits his cardiologist yearly which creates a little problem. He still sees his Ped Cardiologist. The normal adult Cardiologist is not familiar with his condition. He’s had 5 surgeries. The last one was when he was 5 years old. He’s a straight A student, and on a full academic scholarship to UoA. He was not allowed to play competitive sport, so he was very active in Boy Scouts. He earned his Eagle, and loves to backpack. He’s even been down in the Grand Canyon a couple of times which blows his doctors minds. It sounds like your son is doing very well.
If you ever run into anyone with our sons conditions don’t hesitate to give them my contact information. It’s really scary, and we would have loved to have had someone to talk with back then."
Wow! HUH? What a Mighty God we serve, when He listens someone like me and answers my PRAYERS!!!! and promises me in Jeremiah 29:11 that He has plans for Jameson, to give him hope and a future!!!
Have a Blessed DAY!!!
Thursday, February 12, 2009
Vote Here: www.colgate.com/ShowTheLove
About HLHS: http://hlhsinfo.homestead.com/
http://www.childrens.com/HealthLibrary/HealthLibContent.cfm?pageid=P01798 This is has a great picture of the heart.
http://learnaboutchd.blogspot.com/ Love this one!
http://heartnhands.org/ Our support group
Wednesday, February 11, 2009
Tuesday, February 10, 2009
- Go to www.colgate.com/ShowTheLove and go to Dallas, and vote for Medical City, for a Children's fun center. You can do this once a day from you computer. Also, if you want to help, leave me a comment on this post if you know how to put in a word in instead of the whole address...I see a lot of people doing this and I am feeling very inadequate in my blogging skills.
- Donate Blood--I remember asking the nurse if she thought Jameson had any of his "original" blood that he was born with, and she said, "Probably not." Those donors, among others, gave J life.
- Volunteer--I'm not really sure what hoops you have to jump through to volunteer, but I remember a sweet lady came in while we were on the pediatric floor (this floor, YOU are responsible around the clock) and sat with J while he was napping, so I could go sit and have some lunch outside of the room. It was very nice.
- Donate Money--Crsti is dedicated to research for CHD. If you would rather donate your money to something YOU choose, instead of it all going to Uncle Sam, http://www.crsti.org/ is a place to visit, and I assure you your money will not be going to pay an executive's salary.
- Keep 'Em In--I'm guilty of giving Emma a dose of Tylenol to mask a fever, so I wouldn't miss a millionth day of work, or so I wouldn't feel guilty about missing church, or so I could get a workout in. Now I realize that was a major no no. I was putting other kids at risk, and I didn't even know their medical background. Keep this in mind, there are other kids with special needs who don't handle sickness well at all. And although their parents shelter them during the rsv/flu season, they DO like to get out during the other seasons!
- Encourage--It is so easy to send someone an e-mail to see how he/she is doing. Whatever method of communication you choose, this can make someone's day so much brighter.
- Pray, pray, pray--There are so many little hearts out there for you to pray for. Here are a few for you to start with, who need our urgent prayers.
Caleb May has HLHS like Jameson. He is very sick after his first surgery. Visit http://www.caringbridge.org/visit/calebmay. Pray for healing.
Baby Maverick is still very sick. Visit http://babymaverick.blogspot.com/. Pray for healing.
Baby Chase is doing very well, but has a sedated echo and check-up today. Visit http://ourfamily-henley.blogspot.com/. Pray for a great visit.
I'll end with a picture of my little miracle!
Monday, February 9, 2009
- 'Let go, and let God.' As I stated before, I am learning this, but it is a work in progress.
- 'One day at a time.' I believe this, but last night I couldn't sleep because I was having panic attacks thinking about Jameson's 3rd surgery, 1 1/2 years away! Another work in progress.
- Usually there are 'two steps forward and one step back.' With every good day Jameson had during his hospital stay, it was usually followed by a not so good day(s).
- 'Enjoy every day as if it were your last.' I don't have this down, but I try. Sometimes I do have to throw myself a pity party.
- Take a bunch of pictures. I took so many pictures before, during and after Jameson's surgeries. It is so hard to look back at them now, but when I do, I'm amazed at how God's amazing grace got us through it! Also, don't forget all of the day to day pics. Those are fun ones to look back on.
- Go with your gut. Always listen to yourself, even if you are a bit neurotic (that's me). You could end up saving your child's life.
- Pray, pray, pray. Make sure everyone you know, knows that they need to be praying for your little one. Assign family members certain prayer requests to pray for every day...this is what I am about to do for J's 3rd surgery!
Sunday, February 8, 2009
- Congenital heart defects are America’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
- Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly underfunded.
- More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime.
- Congenital heart defects are the #1 cause of birth defect related deaths.
- There are 35 different types of congenital heart defects. Little is known about the cause of most of them.
- This year almost 40,000 babies will be born with a congenital heart defect. 4,000 of them will not live to see their first birthday.
- In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.
One final thing, please help Medical City win a fun center, you can vote once a day by clicking here www.colgate.com/ShowTheLove
Saturday, February 7, 2009
So first I will share 7 reasons why I am happy to be a CHD mom!
#1 of course is this little guy right here!
#2 I am learning that God is totally and control, so maybe I should not be such a control FREAK! God is so good and has brought Jameson so far.
#3 I want to help those in similar situations.
#4 I have been amazed at the out pour of love and support people can give. People we don't even know pray for Jameson every day.
#5 I know so much more about CHD...(statistics to come and they are baffling).
#6 I have met so many people that have become so special to our family. The doctors, nurses, staff, other CHD families, and the people from church that came to pray over Jameson during his hospital stays.
#7 I am able to witness the incredible strength Jameson has to fight through this. God has weaved him in such a way that he has this drive to face his giants. I also see the strength of the other kiddos we see at the hospital functions, they are alive and fighting.
I will end with this website, the CHD blog, please make sure to read the poem "My Son," and Mackenzie's story (told throught the eyes of the big sister and the baby's name is Jameson, but she is a girl). Also, "It's better when you work together" gives alot of information about HLHS, and where we are now in treating it.