EKG Results

We have some test results back. Granton's Echocardiogram looked fine. He does not have an enlarged heart and the function is strong (it beats normal). However, the EKG (Electrocardiogram) showed concerns. Based on this test, Granton's electrical impluses do not travel well. This could be because some of his heart fibers are damaged. We are wondering if his heart was overworked during his hospital stay, as it was trying to push blood through his weakened lungs. We don't know anything for sure yet.

We will go back to CMH to get an opinion from a cardiologist and repeat the EKG. You should know that the receptionist has had a lot of referals lately for this very issue. Our doctors suspect a problem with the EKG machine.

Jenni

The Pirates Back!!

Yesterday, was Granton's 2 year check-up in KC. We started by going to the dentist. Granton doesn't have any cavities, yeah! He held real still while his teeth were being counted and cleaned. Then, we got his blood drawn which went very smooth. He only got one stick and didn't cry. They also drew up a larger panel this time and an unusual amount of blood came out easily! Next, we learned how well Granton's immune system is doing. I will list all the factors that his doctor pointed out to help explain the positive report. First, Granton's immune system has responded to the vaccines he received and he should be able to get the live vaccines in 6 months. Next, his immune globulins--iga and igm are both normal. And, last his b-cell count (the one we've been praying for) improved from 16% to 20%! Although 20% sounds lower than it should be, our doctor in confident that Granton's immune system is sufficient with 20% b-cells. Also, he said that last year at this time--when the retuximab completely wiped out all his b-cells, the doctor thought he might have to receive ivig support for the rest of his life. Now, he is optimistic that this isn't the case, which is huge for us!!! Dr. Dalal is confident enough in his immune system that he doesn't want us to give any immune support unless his numbers drastically change. His result was 401 down from 406 but still above 400.

Now, we do have some small concerns. After, speaking to the bone marrow doctor, Granton went to the eye doctor. The eye doctor told us that our little pirate has to wear a patch for a while until his weak eye gets stronger. Basically, he has a lazy eye and we go back in 3 weeks to check it and get an excuse to play in the fountains at crown center. :) Finally, we went to see the heart doctor. Where is Kaynee during all this you say? Thankfully, at home with her dad where--by the way--she was a fantastic little girl! We haven't heard any results from the EKG or pictures of Granton's heart.

I will add one prayer request if you think of it. Granton's hemoglobin (red-blood cell count) was slightly low yesterday, not too alarming. His red blood cells also tested positive for igg and should be negative. I think this means that his immune globbulin (igg) has coated his red-blood cells. This could be because he still has vivaglobin (immune support medicine) still in his blood stream from 2 months ago. Or, it could mean that his red-blood cells are about to be attacked again. Now, don't think too negative yet because other lab results like AST, ect. were normal this time, and last year when he became anemic they were not. Also, his complement cell was negative and last year it was positive. So, anyway we will test his blood again this tuesday to see the changes good or bad.

All and all we were completely pleased with our visit and Granton's favorite part of the day was seeing Thomas the Train on a big track in the waiting room. I heard, "Go Thomas, Go!" while he was eating his snack.

Jenni

Leveling out?

I know it has been a long time since we put any pictures on here.  I will try to do better over the summer now that I have a little more time.  Two of these are of the kids with the new member of the family, Capone or Pony for short.  Kaylynn loves all animals.  She was loving of Pony on her own and I was able to catch a picture.  Granton saw me and did not want "Kaney" (that is what he calls his little sister) to get more press then him so I took his picture also.  The other picture is Granton on the his first set of wheels.  He is still needs to study some more before he gets his driving permit.

I know many of you have been praying for Granton and his IVIG number.  To make a long story short, Jenni and I were giving him a shot once a week to boost his immune system.  We had to keep a certain number above 400 and the Doctors goal as 500.  Anyway his number got all the way up to 600 and tests showed his immune system WAS responding to germs.  So we were going to start weaning him off the IVIG shots and test his number every two weeks.  The first two weeks his number only dropped about 30 or so points.  The next two weeks it dropped by nearly 100.  I think some of the IVIG meds were still being absorbed from his fat the first time and that is why the number dropped so much more the next time.  Anyway, the next go round he dropped another 30 some points to 436.  Remember we have to stay above 400.  Next drop was only 13 points to 423.  We just got his latest number on Friday and the number only dropped 7 points to 416.  We are getting very close to 400 but the number is starting to level out.  The doctors have decided to keep watching it and see what happens.  We agree.  If we give him the shot, his body will not think it has to make that stuff.  Granton did get a fever of 102+ but it dropped and the next day his temp. was normal.  He also got a real bad caught and was coughing all night long.  He sleeps across the hall and I can hear him coughing.  It brings back bad memories of when he had phenomena and could not improve.  I basically don't sleep when he is coughing.  However, I am happy to report his cough is going away.  He only coughed three times last night.  This is good because we were told to watch this real close as the Doctors were concerned about it as well.  This is just the latest time I have been reminded through Granton to TRUST in the Lord and pray.  That is what we are doing.  Specifically, or in the short term, I am praying for his IVIG number to level out and start to climb.  But I mostly just pray that he will have a normal immune system.  Actually, Granton prays this every night as well.  I read him a bible story and then we say prayers.  I coach him through it but he pretty much has it down.  He always ends his prayers saying to Jesus  "I love you, Amen."  Then he roles over and and says "night, night Daddy."  and I walk out.  As I walk out I often to pray for him and thank God that I am not walking out of a hospital room after tucking him in like I did so many times at Children's Mercy.  Thank you for your continued prayers you will never know how much they have meant to my family.