Jaxson is staying as stable as he can be. He is home, and thats what matters. We have an echo on Thursday, can't wait to see what that shows. We've given a couple of extra doses of diuretics, but we'll have to see what the echo shows to see were we go from here. Mondo is really struggling all around. He gets worse when Jax gets sick or goes into the hospital. He is way behind in school, so we may be putting him in resource just for this year to get him caught up to go to junior high. Also we are getting him back into counseling. I just think it would be nice for him to have someone to vent too besides mom and dad.
One of our Healing Hearts friends, Paul Cardall, is desperately needing that call that a heart if available. You probably know Paul, but he made this video a while ago. I was waiting to post it because Jax defect is wrong in the video. It's my fault, I don't know what I was writing that night. Its to raise CHD awareness. Did you know its the number one killer of children? But I wanted to show it, and ask for you to pray for Paul tonight, that his heart comes soon so he can get healthy and get home to his beautiful wife and daughter.
The video has his beautiful music with it. I highly recommend his CD's. They are expecially good for babies. I bought one and play it in Jax CD player at night while he is going to sleep. He seems to love it. They are also great hospital CD's when their confined to a bed all day long.
So when it gets to Jax, his real defect is AV canal, PDA, and pulmonary hypertension
1 month ago
9 comments:
I am so sorry about Mondo...I am sure it is so hard on your boys to watch Jax and you and Ray go through all you have! It seems as though the siblings suffer so much. I know this last year has affected Jaden a lot...at 3 you don't understand much, except that your life is completely changed...I know that if anything ever happened to Preslie, the boys would be destroyed. I pray for them just as much as I pray for Jax...you are a family unit...not just one or two, but all of you...all of you deserve peace, and some normalcy for a change. Praying for Paul too...I LOVE LOVE LOVE his music...brings a great spirit into our home. WE all need more of that...Paul has too much work to do here! Love you girl!!!
Praying for all of you, sorry to hear that Mondo is struggling so much.
Hi Lacey, so sorry to hear about Mondo not feeling himself and you can see how much he loves and adores his little brother/s! I will keep him in my prayers aswell as little Jax!
Also thinking of you all on thursday with your appointment for Jax! Big hugs and blessings!
I hadn't read Paul's blog in a while. I had no idea that he was up at PCMC. I'll have to make a couple of bows for his beautiful daughter.
Sorry to hear about your family's struggles right now. What time is your echo? We should grab Jeana and have a group hug! I'll update the blog after our pre-op appt Wed with our surgeon info.
I'm so sorry that there are so many hardships for all of you right now! I wish that I could do more for you! Just know that I'm praying often and thinking of you guys often!
These health issues affect the whole family and I'm sure it's the most difficult on our children.
That video was wonderful! It's just so sad to see so many children having gone through all of this! I'll add Paul to my prayer list.
Hang in there Lacey! You are a TERRIFIC Mom! LOVE, HUGS and PRAYERS!!!
I know I have been really MIA........It seems like every time I try and sit down and write a blog, I get interrupted by one thing or another........Evan goes back to school on the 14th - a little late I know they had major construction this summer........So I should have some more "me" time while Avery is napping :0)
I'm sorry that Mondo is having a hard time, but you are doing a great thing by continuing to send him to counseling......For me personally it was always easier for me to talk to someone about my feelings who wasn't in my family, or someone who I was afraid would tell other people things that I had said.....
I pray for Jax and your family every single day! I hope that you can get yourself checked out quickly, you worry me when you talk about your palpitations,.....
I just wish Boston would give you a definitive answer about what they are willing/not willing to do for Jax......Having you hang in the balance is not fair by any means.......I believe that they are fearful of the unknown with him.........They are fearful that if something were to happen while he was there, you would be very far from home and your support system,......I believe also that they are waiting for Jax to maybe show more signs of improvement and stability.......I just wish that rather than make you wait all this time with no word, they should just call you and tell you what their feelings are.....
I'm very saddened by Paul's decline :0( His body is very tired. But he still always has a smile on his face :0) His music is absolutely beautiful and I too play it for Avery at night when he won't settle........
<3 <3 <3 xoxoxoxoxo
You are all in my prayers! God Bless You!
Oh my goodness girl... I need to stop reading your blog! (that'll never happen) I am in full blown tears every time I read or watch something you post. I'll be praying....
So beautiful! I am very familiar with Pauls story and beautiful music, but had never seen this collection of photos to his music...Im in tears!
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