Please keep praying for Kym Ella! She is recovering from her second surgery and is super tough but needs your best thoughts and prayers!! Here are some websites for Kym Ella:
www.youcaring.com/alcapafighters
kymellasheart.blogspot.com
We are so fortunate to be where we are with Jerry right now. He is a strong little boy and we are so lucky we did not have more complications. Currently, he is saying he doesn't feel good quite often and has now had at least 4 episodes of feeling sick, throwing up, and then out of it for a bit then completely fine a few hours later. We will be looking in to this. Could or could not be heart realted.
Sunday, May 12, 2013
Friday, April 12, 2013
Prayers Needed for Kym Ella
Hi friends. Recently, I have been in contact with Monica who has a baby named Kim Ella with ALCAPA. Another story of misdiagnosis. Fortunately, her mother persisted and took her to a second doctor and she had her surgery to correct ALCAPA. Kim Ella has a lot of damage to her heart and the scar tissue is blocking her artery even after this first surgery. She is in Cleveland but now talking to Cincianatti about anothe surgery. She is on 14 medications like Jerry was at one time. Please pray for her and send your best thoughts.
P.S. Jerry will be 5!!!! on May 16th. He still wears a lot of 24 month clothes and we have an endocronologist appointment the first week of May. He is playing soccer with 4 and 5 year olds and will be on a T-ball team too. He is doing private gymnastics (we had a welcome wagon for one month free) and he loves it. It is amazing how much stronger and confident he has gotten in this short time. He seems to be doing well since that last episode that worried us, although he has been sick so much with fevers and strange viruses.
Remember KYM ELLA!
Thank you and thanks for keeping up with Jerry!
P.S. Jerry will be 5!!!! on May 16th. He still wears a lot of 24 month clothes and we have an endocronologist appointment the first week of May. He is playing soccer with 4 and 5 year olds and will be on a T-ball team too. He is doing private gymnastics (we had a welcome wagon for one month free) and he loves it. It is amazing how much stronger and confident he has gotten in this short time. He seems to be doing well since that last episode that worried us, although he has been sick so much with fevers and strange viruses.
Remember KYM ELLA!
Thank you and thanks for keeping up with Jerry!
Sunday, March 10, 2013
Strange Episode
Hi everyone! We are doing great in our new house and love our neighborhood. It was amazing today with the nice weather watching the boys run around out side with so many new friends. The boys have been really pretty healthy this year compared to the past so we are really enjoying that. Jerry did have influenza and gave it to me despite flu shots. Isaac I think got it too but not too bad because he had been on the tamiflu.
The other day Jerry surprised us with an episode that now we think must be related to his heart. He was running around playing with some kids that were over. They were playing some kind of game that involved running around and screaming! Jerry suddenly stopped and went to the couch and laid down. He said he didn't feel good. He looked really pale, his heart was pounding and he was super sweaty. He tried to get up and play again after a bit but then started crying and laid back down. This went on for about 30 minutes until he seemed mostly better and we took off to go to Isaac's fun fair at his school. Jerry was okay in the car but then fell asleep on John when he was carrying him in. he woke up and said he wanted to play but then started crying and saying his head hurt and he was still tired. He eventually threw up several times in the waste basket and then fell asleep again for a few minutes. He woke up and then improved and was fine ever since. I was hoping it was a virus but obviously not. We will just have to keep note of this and watch how he does running with all the big kids outside as the weather gets nicer. Both kids have endocrinology appointments and cardiology appointments in the spring. That's all for now. Thanks for checking in with us with emails! Pictures soon? I think I have been saying that for a year or more! Time is flying and life is busy!
The other day Jerry surprised us with an episode that now we think must be related to his heart. He was running around playing with some kids that were over. They were playing some kind of game that involved running around and screaming! Jerry suddenly stopped and went to the couch and laid down. He said he didn't feel good. He looked really pale, his heart was pounding and he was super sweaty. He tried to get up and play again after a bit but then started crying and laid back down. This went on for about 30 minutes until he seemed mostly better and we took off to go to Isaac's fun fair at his school. Jerry was okay in the car but then fell asleep on John when he was carrying him in. he woke up and said he wanted to play but then started crying and saying his head hurt and he was still tired. He eventually threw up several times in the waste basket and then fell asleep again for a few minutes. He woke up and then improved and was fine ever since. I was hoping it was a virus but obviously not. We will just have to keep note of this and watch how he does running with all the big kids outside as the weather gets nicer. Both kids have endocrinology appointments and cardiology appointments in the spring. That's all for now. Thanks for checking in with us with emails! Pictures soon? I think I have been saying that for a year or more! Time is flying and life is busy!
Thursday, December 13, 2012
Updates
Crazy times! Getting the keys for our new house tomorrow! It will be nice to give my mom her house back and be on our own. It has been quite a roller coaster ride.
So Isaac had 3 different tests for Cushing's Disease. It is very rare, especially in kids, and very difficult to diagnose. One of the tests for Isaac was positive and the others were normal. The doctor thinks the one was a fluke and it is not likely that he has Cushing's. He has a lot of symptoms but hopefully they are just coincidence. He has grown some since he had the year of not growing (taller) and gaining weight quickly so now we are going to just recheck him in 6 months and see where he is at. We will have his heart rechecked in the summer too. Isaac's insulin growth factor test came back normal too. For Jerry, that test is very low.
Jerry is also on hold until at least spring. He has a very low IGF1 but normal pituitary from what they saw on the MRI. His heart looked great on the MRI too!! I need to post a picture of him holding his first normal EKG! He is off of his enalapril medication but still takes baby aspirin. He is fine off of the heart medicine now but the doctors cannot figure out why he has always had this awful reaction to missing a dose and it was the same when we went off of it. Since they can't see why it would be I kept thinking it is just a fluke and it can't really be connected...well, after 6 times now...I am sure it is connected to missing enalapril. He would get super tired, very nauseous and sometimes throw up, some headache and then sleep for hours crying on and off and then get over it. Sweating too. Very strange I guess. Kind of bothers me that no one knows why he got that way but he is really fine now off of it. The scar tissue they thought would not go away did! He does still have some remaining where the surgery was and it has to be monitored but really this is great news! He still is not gaining weight or growing well. He at some point will probably have to redo that test where they could not get the IV in. Ugggggggggghhhhh! But for now we are just going to settle in our new house and keep enjoying preschool!
That's about it for now. Thanks to everyone for checking in with us! Merry Christmas!
So Isaac had 3 different tests for Cushing's Disease. It is very rare, especially in kids, and very difficult to diagnose. One of the tests for Isaac was positive and the others were normal. The doctor thinks the one was a fluke and it is not likely that he has Cushing's. He has a lot of symptoms but hopefully they are just coincidence. He has grown some since he had the year of not growing (taller) and gaining weight quickly so now we are going to just recheck him in 6 months and see where he is at. We will have his heart rechecked in the summer too. Isaac's insulin growth factor test came back normal too. For Jerry, that test is very low.
Jerry is also on hold until at least spring. He has a very low IGF1 but normal pituitary from what they saw on the MRI. His heart looked great on the MRI too!! I need to post a picture of him holding his first normal EKG! He is off of his enalapril medication but still takes baby aspirin. He is fine off of the heart medicine now but the doctors cannot figure out why he has always had this awful reaction to missing a dose and it was the same when we went off of it. Since they can't see why it would be I kept thinking it is just a fluke and it can't really be connected...well, after 6 times now...I am sure it is connected to missing enalapril. He would get super tired, very nauseous and sometimes throw up, some headache and then sleep for hours crying on and off and then get over it. Sweating too. Very strange I guess. Kind of bothers me that no one knows why he got that way but he is really fine now off of it. The scar tissue they thought would not go away did! He does still have some remaining where the surgery was and it has to be monitored but really this is great news! He still is not gaining weight or growing well. He at some point will probably have to redo that test where they could not get the IV in. Ugggggggggghhhhh! But for now we are just going to settle in our new house and keep enjoying preschool!
That's about it for now. Thanks to everyone for checking in with us! Merry Christmas!
Wednesday, October 10, 2012
Great Results! And a Funny Story...
Jerry's heart looked great on the MRI. They were surprised they could get good images at his age but his heart rate stayed nice and slow. His arteries were not blocked and this is such great news. He may still run into complications later and still needs to have heart scans regularly. His pituitary looked normal in the brain scan which is not ALL great news. If it showed to be a little small it would make sense that he needed growth hormone because enough could not be produced. Since it is normal we need to go back to that awful growth hormone stim test. We know he has low IGF-1 which is kind of like the messenger to make the growth hormone do what it is supposed to do. But it could still be low hormone that is the more exact cause. Both things need different medications and the only way to know which is the stim test that we tried where they could not get the IV in. We are just on hold now until John's new job insurance kicks in.
Isaac's igf-1 test has not come back yet. We did this crazy saliva cortisol test where he was supposed to spit in the cup from 11:30pm to midnight but it turns out we got the wrong directions from the dr. It is a certain vial thing we needed and actually he has a sponge like thing in his mouth for 2 minutes during that half hour and then it goes in the vial and to the lab. so we have to do that all over. I think they are testing for some crazy thing called cushings disease because Isaac had significantly slowed linear growth and rapid weight gain. He does actually have some of the other symptoms so it is kind of scary but I am SURE it is not that.
So here is a funny story from a month or so ago. Jerry and Isaac were tucked into bed and I could hear them talking on the monitor. There have been many funny conversations. This one tops them all.
J--Isaac, I am not sure who is going to be older first, me or you. Who is going to be a grown up?
I--Jerry!! I AM OLDER! YOU WILL NOT be 18 and I will. I will move out on my own and leave the house. I can get a job. YOU CAN NOT! You will not be as old as me. After a lot more birthdays after I turn 18 then maybe you will be doing it.
J--But I don't know who is going to die first
At this point my heart starts aching and I want to go in but I listen...
I--Jerry, nobody knows that
J--I can't wait to go to heaven!!
I--Jerry, you don't want to do that, bad stuff happens on the way to heaven. You get run over by a truck, you maybe get shot or fall off a mountain, or have a heart attack.
YES, Now I rush in. "Okay...no one is going to die, no one is going to get shot or hit by a car..."
Crazy! Jerry is always talking about heaven and about his Papa and his Nonno. He said a few days ago that Papa is learning all of his music with him from his music player and the music he learns at school. He talks about all the colors of heaven and how beautiful it is. I wish he didn't have to even know of death but at least he somehow is so much more convinced of the amazing after life than most!
I also did try to tell them how God makes everything okay when we are going to be with him and how it is just hard for people that miss his new angels. Such a tough thing to explain...
Isaac's igf-1 test has not come back yet. We did this crazy saliva cortisol test where he was supposed to spit in the cup from 11:30pm to midnight but it turns out we got the wrong directions from the dr. It is a certain vial thing we needed and actually he has a sponge like thing in his mouth for 2 minutes during that half hour and then it goes in the vial and to the lab. so we have to do that all over. I think they are testing for some crazy thing called cushings disease because Isaac had significantly slowed linear growth and rapid weight gain. He does actually have some of the other symptoms so it is kind of scary but I am SURE it is not that.
So here is a funny story from a month or so ago. Jerry and Isaac were tucked into bed and I could hear them talking on the monitor. There have been many funny conversations. This one tops them all.
J--Isaac, I am not sure who is going to be older first, me or you. Who is going to be a grown up?
I--Jerry!! I AM OLDER! YOU WILL NOT be 18 and I will. I will move out on my own and leave the house. I can get a job. YOU CAN NOT! You will not be as old as me. After a lot more birthdays after I turn 18 then maybe you will be doing it.
J--But I don't know who is going to die first
At this point my heart starts aching and I want to go in but I listen...
I--Jerry, nobody knows that
J--I can't wait to go to heaven!!
I--Jerry, you don't want to do that, bad stuff happens on the way to heaven. You get run over by a truck, you maybe get shot or fall off a mountain, or have a heart attack.
YES, Now I rush in. "Okay...no one is going to die, no one is going to get shot or hit by a car..."
Crazy! Jerry is always talking about heaven and about his Papa and his Nonno. He said a few days ago that Papa is learning all of his music with him from his music player and the music he learns at school. He talks about all the colors of heaven and how beautiful it is. I wish he didn't have to even know of death but at least he somehow is so much more convinced of the amazing after life than most!
I also did try to tell them how God makes everything okay when we are going to be with him and how it is just hard for people that miss his new angels. Such a tough thing to explain...
Tuesday, October 2, 2012
All Done and Done Well!
Jerry did an amazing job today! He was so cooperative and pleasant and did everything they needed him to do. Since he showed no real anxiety or resistance they did not even give him the liquid medicine to calm down. He just made his gas mask smell good with smelly chapstick and breathed in when it was time. He had a rough time waking up but did fine coming off of the ventilator and we were able to leave pretty soon after he was awake. I am so glad it is over and thank God that Jerry did so well and there were no complications. I will hopefully talk to the doctors tomorrow about the results of both his heart and brain MRIs. My poor little guy. I really hope we can be done with this stuff soon. A year with out some kind of a test would be so nice for him. Exhausted...off to bed.
Sunday, September 30, 2012
Can't Wait...
Till it's over! Jerry has MRI procedures on Tuesday. We need to be downtown by 7am (at least it's Cleveland downtown and not Chicago!). He will have an MRI of his brain to look at his pituitary gland for any abnormalities and will have an MRI of his heart. If the pictures are not clear because he is too small for a heart MRI then they will discontinue it. Hopefully they will get good pictures and, even more importantly, we hope they show that the artery and the aorta are fine. If this is true, he will not have to have the heart cath that would be scheduled next year. He will be fully under anesthesia and intubated. I am sure he will be fine but it is still very scary for us. We just cannot wait until this is over.
I have talked with Jerry a little bit about how it will go and think he will do okay. He will drink a little medicine to make him sleepy and then breath in the gas to go completely to sleep. Then he should not feel them put in the IV.
Isaac is going through the testing for his lack of linear growth and sudden increase in weight gain. He is TERRIFIED of his blood test. We are going to go after school tomorrow. I told him about it tonight and tried to focus on the "fun thing" after it is over. He cried really for over an hour almost until it was time for bed. Hopefully he will not totally fight the whole thing and will realize actually that it is not that bad. Then, at some point, Isaac has this really strange test to do for cortisol levels. I have to wake him at 11:30 at night and have him spit all of his saliva in a cup until midnight. STRANGE, I know. He is not nice in the middle of the night and this will for sure be a huge battle and I can hardly blame him!! He is doing a lot of sleep walking these days and when we gently guide him back to bed he starts to wake up and is very angry. One sleep walking episode we found him by the door to go outside putting on his shoes!
John got a new job!! I can't remember if he had it already at the last post... So we are bidding on houses. Yes, houses. We tried one and they didn't go down as low as we wanted so we found another. It is so tough because we have been in limbo so much longer than we had planned and now I feel like we are kind of rushing to get a house...a house that is supposed to be our forever house!
Between all of these things and being pretty sick with a bronchitis, I have not gotten hardly any sleep. To get settled in our own house and be done with all of this testing will be so nice. I hope they really figure out something that will help Jerry's appetite. He is not eating real well and I don't think he has gained an ounce in a year. He did just gain an inch or so recently and looks so lean. Oh, I almost forgot something so important! Jerry is going to PRESCHOOL! I never thought he would be healthy enough and just wasn't sure it would happen. He is loving every second of it and sings all the songs from school. He just beams getting out of the car and running in. It is so amazing to see him like this and I am just so happy for him. I stayed at school with him for the first few days and it was so cool to see him do all the school things for the first time. Also amazing is that he has gotten over a cold and then a cough without an ear infection and never got my high fever and cough that my mom also had! Feeling very Blessed...
Off to bed now. pictures tomorrow...maybe...always run out of time. Updates for sure after Tuesday.
I have talked with Jerry a little bit about how it will go and think he will do okay. He will drink a little medicine to make him sleepy and then breath in the gas to go completely to sleep. Then he should not feel them put in the IV.
Isaac is going through the testing for his lack of linear growth and sudden increase in weight gain. He is TERRIFIED of his blood test. We are going to go after school tomorrow. I told him about it tonight and tried to focus on the "fun thing" after it is over. He cried really for over an hour almost until it was time for bed. Hopefully he will not totally fight the whole thing and will realize actually that it is not that bad. Then, at some point, Isaac has this really strange test to do for cortisol levels. I have to wake him at 11:30 at night and have him spit all of his saliva in a cup until midnight. STRANGE, I know. He is not nice in the middle of the night and this will for sure be a huge battle and I can hardly blame him!! He is doing a lot of sleep walking these days and when we gently guide him back to bed he starts to wake up and is very angry. One sleep walking episode we found him by the door to go outside putting on his shoes!
John got a new job!! I can't remember if he had it already at the last post... So we are bidding on houses. Yes, houses. We tried one and they didn't go down as low as we wanted so we found another. It is so tough because we have been in limbo so much longer than we had planned and now I feel like we are kind of rushing to get a house...a house that is supposed to be our forever house!
Between all of these things and being pretty sick with a bronchitis, I have not gotten hardly any sleep. To get settled in our own house and be done with all of this testing will be so nice. I hope they really figure out something that will help Jerry's appetite. He is not eating real well and I don't think he has gained an ounce in a year. He did just gain an inch or so recently and looks so lean. Oh, I almost forgot something so important! Jerry is going to PRESCHOOL! I never thought he would be healthy enough and just wasn't sure it would happen. He is loving every second of it and sings all the songs from school. He just beams getting out of the car and running in. It is so amazing to see him like this and I am just so happy for him. I stayed at school with him for the first few days and it was so cool to see him do all the school things for the first time. Also amazing is that he has gotten over a cold and then a cough without an ear infection and never got my high fever and cough that my mom also had! Feeling very Blessed...
Off to bed now. pictures tomorrow...maybe...always run out of time. Updates for sure after Tuesday.
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