OUCH!

Jerry was so resistant to starting the tape and stickie removal process! But once we got started he did great taking a few off himself and was so proud. I spared you a video of me removing the final two. He had stopped all progress and we had to get them off so we could return the whole thing in the mail and he could get a bath. So we both cried while I held him down and used orange oil and pulling. He was happy they were off but then let out his anger about the whole situation. He screamed "I hate those things! I didn't want to put those on my skin! Next time I'm not going there" I joined in and encouraged him as I feel pretty angry about the whole thing myself sometimes! As much as he hates the tape he loves the monitor and cords and did not want me to send them back! They have been interesting play things for the last 24 hours (a dog leash to walk him, a rope for rescuing imaginary friends). All is good now, besides the really sore rashy skin.

Jerry has said a few times lately "my heart's beeping loud," while feeling his chest. When I feel, it surely is! I think it has been when he is laying down. Not while on the monitor of course. We just have to keep track of how often he says this. He even told me "it's pumping hard." I really don't think I use that word with him but I guess I must have at some point. While he was on the monitor he was out in the high heat for a few minutes and then said he was too tired and needed water so I am curious to see if he stops before there is any measurable impact or if something shows.

Status Quo in a Big Way!

Jerry is stable with no changes since his last exam except....he is on the growth chart! He is at the 3rd percentile and holding steady! The doctors were thrilled with this. The latest opinion is that the greater likelihood is that Jerry's heart will be OK for at least the next 10 years. We really happy with this although a heart transplant at any point for my guy is a difficult thing to think about. Being older would certainly be easier in many ways. And of course all bets are guarded with "he needs to be monitored" and "we don't know for sure." He is wearing a 24 hour monitor and doing great with that..."his little heart computer." He did so well for all of his appointment except taking the EKG stickies off. Usually we would just leave them on and take them off at home which would be easier for him but since they had to put the halter monitor on we needed the other stickies off. He was spoiled enough by Nurse Linda to make up for the agony. Big brother came along which is always helpful for Jerry and he did great too . Linda gave him a huge remote control truck so big brother is pretty happy too. Things moved quickly today and we got home way earlier than usual. What a great day!

cardiology appointment Wednesday!

I could write for hours there is so much to say! Very tired at 10:30 as usual. Each day feels like a rat race. There are lots of fun moments mixed in but so hard to keep up so I will just share a few tidbits briefly Even though I would love to spend hours writing and posting photos!!

Jerry's weight was 25 lbs. and 11oz. at his last check! this was really good gain for him and I think puts him almost at the 3rd percentile! He is about that percentile for height too. With high heel crocks on he was able to get on all the 36 inch rides at cedar point. He had a complete blast and wanted to go on all the big people rides! The endocrinologist finally called back and apologized and said that in the end he did not believe Jerry's results were a separate issue but rather related to past heart failure and nutrition. He was also on really, really high doses of steroids as a 4 week old infant for a few months and I really believe that could have something to do with it too. The fact that a doctor would put a kid through a blood test with out knowing how he would interpret the result is a little annoying. We didn't really need the blood test to tell us he was small!

Dr. Towbin's input made me feel that there is a better chance that Jerry's condition will stay stable and he will be able to keep his heart for childhood. However, Dr. Towbin did not really look at anything besides Jerry's last echo and said that if there are other symptoms or problems it brings questions about the accuracy of the echo and further testing is needed.

We see our cardiology team at CCMH on Wednesday and will see what news that brings. As Jerry and I talked about his upcoming appt. he told me that he "likes getting his heart pictures and he's used to it." He said "that doesn't hurt but I'm not used to the sticky things and I don't want to do that part." Too bad it's not a choice. He will come home with stickies for at least a 24 hour monitoring of his heart.

Thanks so much to all our friends for checking on us and writing comments and emails. It means a lot to know that you are out there for us.

no phone call yet!

I guess I'll be looking for a new endocrinologist! I cannot believe that I have not heard from anyone in that office after they sent me these IGF 1 results over a week ago. UGHHHHHHHH!

So Afraid of What's Ahead!

So Dr. Towbin was so generous to call back and try to go through my questions. However, many were hard to answer with out seeing Jerry and he did not have any knowledge of how the growth hormone would be impacted by his heart. He basically made all the same conclusions that his last echo did looked pretty good (relative to heart disease) but that all things need to be considered such as his trend and symptoms. He agreed that if symptoms improved after medication increase than it likely was his heart causing the symptoms. I generally I think can live in the moment and be pretty positive but my instinct tells me that Jerry will need a new heart before 20. I feel it in my gut but hope it is maybe just a protective mechanism. Better to be strongly aware of the possibility than be taken off guard by another slap in the face!
I also had sent Dr. Tobin some heart study results for me in case anything would relate to Jerry. I had some issues with severe preeclampsia and heart failure during and after pregnancy and have some on going symptoms. He said that I need to be rechecked because it indicated my left atrium was enlarged. Nothing urgent so I will see about going to someone downtown this summer. The guy I saw a some years ago in Naperville...not so good.

After 3 phone calls to the endocrinologist I still have no explanation for the blood test results sent in the mail. In my last phone call I expressed my frustration to the secretary and she felt horrible but was unable to help me as the nurse and doctor were not in. A different nurse got on the phone and could not help either except to tell me that Dr. Zeller would be in on Monday and he or his nurse would call me for sure.

I pretty much could get my degree in cardiology and now I could add the specialty of endocrinology. I have researched IGF 1 until I am blue in the face! There are endless possibilities about what this could mean and I am scared of all the further blood work and other testing that will be needed. Hopefully, it will mean nothing for now. One tid bit I read said that these numbers can be low normally in young children. Jerry has also been having these severe eye pain episodes for over a year (it started right around the time he had that severe virus and was in the hospital a few days) and I wonder if it is related to anything else....or...ANOTHER odd disorder??? I am not sure how much I can take. I guess a lot more actually since Jerry's comedy and smiles more than outweigh all of this craziness. He lives life to the fullest everyday and forgets the pain and challenges as soon as they are over and I guess we should follow his example.

Tomorrow I hope to finally hear from Dr. Zeller and end this chapter of wondering and anxiety. Please keep my little Jerry in your thoughts and prayers and write a comment here when you visit so he can grow up to know all the people that cared for him and got us through all of these challenges! Thank you friends and we couldn't do it without you!

Quick note

Thanks to everyone for checking in on us. We get pretty busy (and always tired, still waking to get Jerry his milk) and it is hard to stay connected. It helps us to remember how many friends out there care and are praying for us. I am a such a bad blog mommy for Jerry. I cannot believe I haven't got on to post pics or anything for his birthday!! I always have so much in my mind that I want to post and then I never have enough time when I am not exhausted to really focus and write. So I am putting all the fun pics and other news off for now. Just want to say that I finally talked with Dr. Towbin on the phone today. He was incredibly kind and gave a little summary of his impression of Jerry's latest echo. He said basically the same as our Chicago doctors but seemed a little more optimistic that Jerry could live his childhood at least with this heart being checked and staying on medication. The concern is that the scar tissue in the heart makes the heart stiff and as he grows he the scar tissue can become more dense, grow, and cause blockages or even more stiffness. There is not enough out there for him to suggest beyond 20 or so years. However, he did not get my questions that I had emailed and those may include important information for him about symptoms and such. So he, amazingly, said he would call me again tomorrow to finish after he found the questions. I probably should have stopped him during the call as he was giving quite a lot of basic back ground info on the heart and Jerry's anomoly that I am very schooled in already,. I did not want to interrupt and so now am hopeful to discuss more details tomorrow. he did say that when there are questions as in Jerry's case, that more testing may be warranted and could include a cardiac MRI and/or heart cath. Overall, I feel better and with Jerry doing really well lately that feeling is increased. But I will never not worry and understand still that, even for Dr. Towbin, Jerry is somewhat rare and nothing is for sure.

Jerry's growth hormone came back low (got the report in the mail without explanation) and I still do not know what this means. I don't know if he has a whole other disorder or if it is low because of his heart disease. I hope to sneak that question in on Dr. Towbin. I so greatful for having the opportunity to discuss him and for friends at children's cardiomyopthay foundation for helping me reach him. '

Please always excuse my grammar and lack of creative wording..so tired.

More soon...really!

a little update and ALMOST 3!!

Knee surgery went well. I recovered really quickly but just recently seem to be having a set back...probably just over did it. I don't like the extra pounds from my inactivity!

Jerry seems to be doing pretty well lately. No illness since the antibiotic a month or so ago. Usually in the last few weeks he seems to be breathing well, has good endurance, and is eating OK. However, he does sometimes sweat an abnormal amount. He is drenched in sweat since this am with 70 degrees. This week I should hear from someone at Cincinnati about when Dr. Towbin will be able to consult with us. When he seems really well, I secretly imagine that he is cured...despite how impossible this really is. He has an endocrinologist appointment coming up as a follow up from last year. This is just to rule out other causes for his smallness. He needs blood work before we go...not looking forward to that!

We finally have him now on lactose free milk from the carton!! No more formula shaking! It is a little cheaper too...but not much.

Jerry is SO funny!! I think for my own journaling I will have to reflect and write the funniest quotes from the year (or the past month because that is probably all I remember!) I will do this for his birthday on the next post. He is really, really happy most of the time, quick witted, and very sweet and affectionate. He yells from another room..."mommy, I wuv you!" I cannot believe he is almost 3!! We are so grateful to have him and the celebration in our hearts is huge!