Another CDH baby

Hi everyone. I found out today that a friend's dad's boss's child just had a CDH baby. Ok I know that that is hard to follow so we will just say a friend of a friend. I know nothing about this baby except that they are from the Dallas area and delivered in Houston. The baby is about 2 weeks old and on that very familiar (to some of us) roller coaster that these kids take us on. So please keep this baby and his family in your prayers.

MRI update
I sent a CD to Dr Olutoye in Houston, I got a call from his nurse manager Bella and she said the CD they received was empty. I was so angry. I am very concerned about this and want him to see it so I drive the hour the Children's then spend 20 dollars to overnight it and it ends up empty. I told all of this to the radiology people at Children's and they overnighted him a new copy. So hopefully we will hear from him soon.

Thanks
Love
Adam Kimberly and Jackson

MRI update

Hi everyone I know I said I would update right after the MRI, I just have not gotten a chance. Basically we still know nothing. The MRI showed that it is a lymph node, and it is compressing the top lobe of his lung. We did lab tests to see if there was an infection and all the blood work back negative. Our surgeon in Dallas is not worried, our pediatrician said that if the surgeons were not worried then neither was he. I was still worried so I picked up a disc of the MRI and sent it to DR Olutoye in Houston. I talked to him before I sent it and he said he would like to see it, it does not appear to be getting any bigger or smaller. Well I guess that is all for now.
Love
Kimberly Adam and Jackson

I have added some pictures. The one where he is "kissing" the alligator you can see the lump in his neck. We bought him a pool and he loves it so I had to put a picture of that, and then there is one where he is biting Adam's toe, I thought it was hillarious so I had to post that one too.

P.S. Jackson says happy birthday to Grandma!!!!!!!

Hello

Hi everyone. I got a new computer so hopefully I will post more often. I was not posting because my old computer was so slow. Everything is pretty much status qo here. He is still not eating. He is really acting like a toddler pulling himself up in things cruising around the furniture, and getting into stuff he is not supposed to. I LOVE IT ALL!!!!!!!!!!!!!!!!!!!!! The only real medical news we have is that he has developed a small "mass" on the left (non ECMO) side of his neck. It is right above his clavicle at the base of his neck. It feels like it is filled with liquid. It is very squishy, not hard, it dose not appear to bother him. We took him to the pediatrician and he said it is "Concerning but not emergent". Our concern is that a vessel has gotten weak. He said the only way to know for sure what it is, is an MRI. His office has called Children's hospital Dallas to schedule an appointment, and so far children's has not responded. I will be sure to let everyone know what happens with that. That is really all the news for now.

Love

Kimberly Adam and Jackson

P.S. Keep an ear and eye out for Audrey's ad.