Saturday, March 28, 2009

Blankie update

Hello there. I will post the rest of Jax story tonight. This is Malachi. He just recieved his blankie. Go to the blankie blog to read his story.I have few blankies that I have yet to get pictures from. Don't look away from the screen, you know who you are. All I ask with the blankies is a pic. Since I don't get to give them in person, I need a pic so I can see.
I just had a friend say that her little boy takes his blankie to all his appointments. I love it, I want something that kids can cuddle when they don't feel good, or cover their heads when they have to get poked.

A quick update on Jax. No word on what we are going to do to fix the SVC syndrome. His cardiologist talked to the hemotologist and said, we can do this and that with these risks. His hemotologist said, "what you need to do is discuss it with you meeting with the surgeons, come up with plans on how it can be fixed, and then let mom decide whats to risky". I love him. Between him and my pediatrician I think Jax is in great hands. His hemo doc also told him to look at it as if it were a normal little boy that had this problem. Don't think of the downs or the fact that he has a major neurological insult. That shouldn't matter. Yeah for him!!
We may be out of town when the word comes, because they meet every Wednsday, and this Wednsday they may not be able to squeeze him in, so it may be the following Wednsday, when we are at the beach. Wahoo!!


Michelle said...

What a cute little guy with is blankie..well done! Hopefully they will get a good/solid plan laid out for Jax and you guys get to enjoy the beach! Who is your hemo doc?? Is he at Primary's??

Lily said...

The little boy who got the blankie is adorable. But, I must say that you are a beautiful person for doing this. The joy you feel in your heart when you get the pictures must be overwhelming! Enjoy the beach!!!!!!

Junior said...

Such a cutie, you did a great job on the blanket.

Have a wonderful vacation.

The day at a time. said...

We LOVE our Blankie! Malachi takes it everywhere with him. Right now he is not feeling well and is cuddled up in daddies arms with it!!

Michelle said...

That is too funny...Barnette is our doc as well. I LOVE HIM!!! We had another up there for a while, but he wasn't 'fighting' for Preslie...he was too busy filling his ego and not listening to me. I was referred to him by a lady I met there who has 3 children with DS.He has been AMAZING and you can tell has a real vested interest in Preslie. That's great we have the same doc. He was supposed to do her bone-marrow biopsy monday but with all the respiratory stuff, it's been pushed back at least a month until she is 100% healed (will that day ever come???;) ) She had a LONG night last night...horrible, so we just got back from the hospital meeting with a Respiratory Therapist to help clear her airways, etc. We are hoping to be able to just treat her at home to avoid catching any more 'junk' so we have a standing order with the RT :)...hopefully we'll have a better night! Hope you guys are well too!!!

Stephanie said...

We just got it yesterday.. I'm working on it, I :)
Have a great trip!

Melissa said...

Great Job on the blanky!! Enjoy the beach, YOU SO DESERVE IT!! Will be thinkin of you & I'm SOO jealous;)

The VW's said...

What an adorable little guy!!! It is so wonderful that you do this for all these precious children!

Hope that your cardiologists and you can come up with a plan to help Jax out! I'll be praying!

As for your last comment on my blog: Don't feel bad about starting my sadness! My feeling sad about Gavin's situation comes and goes. Most days I'm fine with what happened, but it's always hard to think back to those days and it's really hard to hear that others (your family) are going through the same struggles!

We did not settle with the hospital. We go back and forth on what we should do. We feel like it was a mistake and that everyone makes mistakes, but we also know how expensive the future will be caring for Gavin due to these mistakes. So, ?????

Great detective work figuring out that this all occured in April of 2007! Yes, it was a very difficult time, as you know! But, life goes on and I wouldn't trade having Gavin for anything!!!

Hugs to you and Jaxson! I bet you are counting the days down until your vacation! Have fun!!!

Anderson Family said...


Dr Burch is our surgeon for Carter's open heart stuff. We really, really like him. Dr. Kouretas was scheduled to do his surgery but when we got there the day of surgery they had rescheduled us with Dr. Burch. He is very good with Carter and with this last surgery, he has been the one who comes down and does the wound check every appointment - which I like. I have met Dr. Hawkins once as well and I really liked him too. I haven't ever met Dr. Kouretas or Dr. Kaaza (I think that is the name of the other surgeon). Hopefully you will be able to have a say in who does your surgery. We pray that the doctors will be able to tell you all the options and you will be able to make the very best decision for Jaxson.


Michelle said...

I am hoping it's uphill from was the worst so far. And tonight she was miserable, finally got her to sleep...she is so 'give-out'. We have 3 respiratory therapists that started a clinic up here for RSV,etc. patients from Primary's (thankfully) so our Pediatrician wrote a 7 day perscription to be able to see them any time we need. They are there during the day and then one is on-call 24/7, so it's a blessing that we don't have to do the 'drive' to Primarys every day!