MY DAY WITH COOPER........

Yesterday was quite the day with Coop. We have been having a little trouble in the last couple weeks with his circulation and color. This is nothing uncommon when he gets cold so we have just been going along as usual. He will quite often turn purple on his hands and lips but that is that. Recently however, when his hands have been purple he holds them out to me and says, "Mommy owie(ouchie)". This has worried me a little but I was still just monitoring it. Then the past two days we have had some episodes of rapid breathing, shaking and he has not been sleeping well. So yesterday morning I decided it was time for a call to the pediatrician. As I assumed he wanted to see him so we headed in for a visit. The good news is Coop's heart has not changed and he is not sick with a flu or cold. This is what we believe is going on.....

Cooper has no tolerance for heat or the cold as most of our bodies do. The slightest of temperature change can make him extremely cold or extremely hot. Therefore, with the cold weather his body temperature is falling quickly at times. His circulation is very poor because his veins are extremely restricted and therefore the blood flow to his extremities is limited causing his hands and feet to be purple and them to hurt. They described it to me like when your foot falls asleep hard and it tingles and hurts like hundreds of needles sticking you; that is what he is feeling. This can be treated with medication to open up the veins however the fact that Coop's veins are restricted is the only thing keeping him alive right now. Because they are restricted the majority of his oxygenated blood is flowing to his vital organs and less to his extremities. If we open them up and the blood flows freely throughout the body his there will not be enough rich oxygenated blood going to his vital organs and therefore he would die. So obviously treating the restriction in the veins is not an option. We will hear from Cardiology today but I am expecting that they will agree with our pediatrician and we will just wait it out. If Coop can handle the pain, we will be just fine but if the pain becomes too great then we may have to proceed with his next corrective surgery earlier than we would like. The other thing to consider is that he may not be in any more discomfort than he ever has been but he is just finally able to communicate it with us.

Every day I learn something new with Coop's condition and I find it to be so amazingly interesting. It seems there is always a new twist or situation to consider. Right now I know that Coop is not is extreme discomfort or anything so it does not bother me and I know he is fine. However, if it gets to the point of him being in tears over the pain I will not be able to let him stay that way. We just don't want him to enter into surgery during the flu and cold season but he has been there before. Coop's heart condition only occurs in less than 1% of all congenital heart defects. It is very rare and only until recently have they been able to treat it. I think every day he lives he gives another little baby a greater chance of making it as well. What a strong little boy!

After our visit to our pediatrician we had a scheduled appointment with the eye doctor. This brought great news. Coop's eyes are starting to work together as they should and seem to be getting stronger. There may even be a day he does not have to wear glasses! I was very excited for an encouraging report although his little glasses have grown on me :) I love Cooper so much and admire his perseverance. I have learned so much from him. Last night I game him an extra long hug and told him how much I loved him and he replied "O tay!". Oh if he only knew what his life has means to us!