My little guy seems to be doing great now after a recent virus and then a cold with ear infections.
Isaac had the virus first of just a fever for 2 to 3 days with no other symptoms. Just when I thought it been long enough and Jerry was in the clear, he woke up one morning breathing really hard and crying a lot. He did not have a fever but kept breathing hard for 3 hours and threw up a few times. Then he got the fever which he had on and off for 2 or so days. He really didn't breath hard the rest of the time with a fever but looked very pale and no energy. Of course not eating at all. After a day or 2 with no fever he woke from a nap crying that his ears hurt and felt warm.
He had double ear infections and started antibiotics.
He is doing great now. I have this chest cold thing that I
hope is something that I can't pass on to him!
It has been hard being couped up trying to avoid germs.
But we had a good 2 months with not even a cold so it is worth it. As you can see in the picture above, we can do swimming because of the chlorine killing germs. The Vaughn Center not too far from our house has a great indoor water park area that never has more than a few families.
The hours are a little tricky so we only did that once. Can't wait for spring so we can get out more.
Jerry seems to be picking up his eating pretty well after this last virus but we continue to have ups and downs. Every bite of food is a big deal and "How did eating go?" is always the discussion at the end of the day. He has not taken to ice cream as much as I would like but during this one visit to McDonalds he did pretty well!
The picture of him feeding his apple to the bear; I tried to get it on video as Jerry was doing some feeding play therapy. He was "feeding" the bear and saying "you can swallow" and "I'm so proud of you, I love you." It was so sweet. If you see the doll in the background...Yes that IS Jerry's. A gift from brother for Christmas that Daddy is more than unhappy about! I encouraged it because of the opportunity for play therapy in the feeding realm. He does feed the baby and talk about the baby "spit it out because it might hurt her belly....She's too full." It is a great gateway to communicate with him and encourage him about his eating.
Jerry and I have made some new friends in Canada. Tracey is the mom of Avery, a 4 year old girl with ALCAPA. Like Jerry, she was diagnosed and repaired late. She is in the same boat as us knowing that a heart transplant is almost for sure in the future. We email very often and it is amazing the similarities with eating, response to illnesses, and heart condition. Tracey has been an amazing blessing to me and I pray for her and her family. Avery has a sister a few years older than her. Jerry and Avery are two of a very, very rare kind.
Dr. Towbin's (cardiomyopathy guru) office in Cincinnati has arranged to have all of Jerry's records sent to him. His office will arrange for a phone consultation once they have gotten them. I am so nervous about this phone call. I want to be calm so I can hear and remember everything he says and I have a million questions as well. I have a feeling we will be traveling there at some point to see him.
The other pictures (I never know how they will turn out in the saved and posted version of what I write)...crazy hair returns (a hair cut is much in need but we seem unable to fit it in our schedule); Jerry is so sweet...even his temper tantrums are kind of funny and sweet. In the one mad face picture, he was mad that I had put his block tower away and told me "that makes me so mad, that's not fair!" A few minutes (the happy picture) later he said "that's OK, I will build a better one now."
Jerry "looks good" right now and does seem much better since his enalapril increase. I hope and pray that something can still change with his heart so that we can put heart transplant out of the picture of his life. If you see him, you would maybe think "what is there to worry about, he looks fine?" Only if you live with this or you talk to lots of other parents of children with heart disease do you know the fear we live with every day. That fear is mostly hidden too, behind the scenes of everyday life and feeling positive about successes. Crazy nervous parent feelings? Some might think so but when you talk to people who have had the clear check up only to have there child become very sick quickly or die from an unexpected cardiac arrest, the worry doesn't seem so silly. I figure it is healthy as long as it keeps us vigilant without ruining the happiness we can find in raising our boys.
Recently, I sat rocking Jerry in his room at night (he is still so much my little baby) I was tearing up a bit thinking about all he's been through and all the unknown of his future. He seemed to be almost asleep on me but then sat up and started talking. He said, "Mommy, you have to be strong like this (showing me his muscles). You have to be strong to hold on for the ride. Hold on to the horsey on the merry go round like this."
And now my little baby interrupts me to "put Playhouse Disney games on this computer."
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