Sunday, August 21, 2011

Good-bye Chicago...

last ride on the train to downtown

Watching our last Chicagoland parade







The fountain at Navy Pier


















From the ferris wheel at Navy Pier









Yes, it's a somewhat sad good-bye to Chicago as we pack to move to Cleveland. John accepted a new job with T-Mobile. It is quite a good move for us financially and for John's career. We are also happy to be getting back to family and to have some help when things get tough with illness and sleepless nights with the kids. Dates for John and I will be easier and all around it is for sure the right thing to do. Still, we will miss Chicago, our town of Oswego, and all of our friends who have been so great, church friends, and our doctors. I don't want it to be a final good bye and hopefully we will be back for some visits (please help motivate us here...invite us back!). Isaac is especially close to his friends here. We are moving on the 30th of this month. We have known for about a month but I couldn't post for a while because we didn't want the word out to Office Max before we were ready (Karen, one of our followers). Then it has been just non stop busy. Here are a few pictures of what is our last trip to the Chicago air show...at least from Oswego. We have gone most years and always have the best time that I insisted we fit it in even with all the packing we have to do! My mom is here helping us and we actually will be moving in with her until our house sells.


A little Jerry update... He has been eating really well (for him, almost normal picky toddler) consistently for the last few months. We have made a lot of break throughs recently! It is pretty evident that his heart does work so much harder than it should. He sweats so much and so easily, gets pretty pale at times, and tires easily especially with outdoor play. Here and there he is really active for longer time period, so we see that too. We have an appointment at Cleveland Clinic on November 9th. We are bracing ourselves for the usual fall and winter full of illnesses but know it will be so much better with family, especially grandmas, to help out!






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Oops! I always think I can take sideways videos like pictures! Jerry was a trip dancing and watching his moves. I caught him late, but he had been looking behind him to see if he had his tushy moving to the right rythym!


So this post has taken me all week to write! And I should be packing! The videos seem to not be working for some reason but hopefully it is a blog site problem that gets resolved. Thanks for following us and stay tuned to see if we are still sane by the time the moving truck pulls away!








Thursday, July 21, 2011

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.








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Wednesday, July 20, 2011

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!

Monday, July 18, 2011

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.

Monday, June 6, 2011

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!

Sunday, June 5, 2011

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!

Wednesday, June 1, 2011

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!

Tuesday, May 10, 2011

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!

Sunday, April 10, 2011

Spring Is Here!







What a beautiful weekend! The kids played in the pool today and even with Jerry's cold (yes another one 4 days after finishing antibiotics) it seemed so good for him to be out playing in the sunshine. I think it wore him out as he did not complain when I insisted he come in after a few hours. He has just been laying on the couch saying "I'm really worn out!"


In between colds, we finally managed to get Jerry's hair cut. He looks older...growing up.


Got word that Dr. Towbin is reviewing Jerry's records and we will hear soon about scheduling a phone consultation.


Even with the news of a future heart transplant looming, this April does not seem near as stressful as last April when Jerry had broken his leg. We were thinking he might have a bone infection and luckily he just had to have a cast. But it was stressful knowing my little guy was in so much pain and that we didn't really realize the when it was first broken! That month last year was also speared by many doctor appointments and tests, including the awful test for cystic fibrosis. Ahhhh...to look back can be a good thing. He seems to be getting over the latest colds and ear infections OK so hopefully his heart is holding up too. Having new ALCAPA mom friends has been great. Although I wish there were no "club" it is nice that we are here to support each other in the journey. I think I have mentioned little Avery in Canada who may also need a heart transplant in the future. I also have been blessed with "meeting" Dana with 1 year old Addie. Addie's heart was repaired at 6 months after repeatedly being misdiagnosed as just acid reflux. She is doing great now and I am so happy for that. Dana is a sweetheart and a great support too.


Both Grandmas will be visiting soon with one day overlap between Grammy and Nonno and GiGI. Jerry has been making things for her (block structures, play do things) for about a month now and is upset when we take them apart so we are very excited to make something soon that we can keep for when she comes! I am having knee surgery on the 24th for a very old injury. I was scheduled to have surgery right before I found out I was expecting Jerry. Somehow it just hasn't fit into the schedule again. GiGi will be here to help out and here for Easter too.


This post is taking several days to complete!! Took Jerry to the urgicare today as he still has this cold and looks so awfully pale. Another pretty bad left ear infection. Ughhh.... I hope this is the last of it. He can't seem to fight anything off. The poor guy is so sick of taking his regular meds let alone antibiotics all the time!

Monday, April 4, 2011

Jerry's News Flash

"Spring is coming and you will be soooooo happy! New trees are coming up and green grass. The Park will not be closed anymore and what else? The festival with animals and music , (Prairie fest I think he means) new rocks come up...new houses come up...." Oh well, he had a good start! I added..."Maybe Dr. Towbin will call......."

Wednesday, March 30, 2011

Feeling Better

Jerry is feeling much better now. Always on guard for the next one. I think the cabin fever really got to me and I signed Jerry up for a little sports class that I do with him. He's going to love it and I feel better about the fact that I can be right with him and purell accordingly...instead of water breaks we will have purell breaks! And if anyone coughs we will probably run for the door quick! I think we will all being feeling less crazy with a just a few nice days here and there to get outside too.

Friday, March 25, 2011

My Ears Are Making Farting Noises!

This is actually Bubbles the Clown from November but Bubbles has made a reappearance. Isn't he cute? Don't ya just want to kiss him?

The cold mentioned in the last post pretty much turned into this. We went to the dr early...probably too early...and it was dx as a cold. I agreed at that time it was but knew that it would almost for sure go into a sinus and ear infection. I was mostly worried about the fact that he wasn't eating or drinking anything (for real...for 2 days he had a total of 12 ounces) and waking so much at night. He did start eating and drinking better so it must have been a sore throat in the beginning but low grade fever and congestion continued. Yesterday was about 10 days into it and he was breathing hard and a little clingy. Still, pretty happy and maybe less tired than me! He was pulling on his ears but saying they didn't hurt. So then he comes up to me "Mommy, listen....do you hear that?" I say, "Noooo, I don't hear anything. What?" "THAT'S MY EARS MAKING THOSE FARTING NOISES!" I guess the swallowing popping thing??? He was so proud! ANYWAY, a med center trip yesterday, a pretty bad ear infection and sinus infection. Now, we can look forward to better sleep in a few days and better eating.

I wish I had more to say heart-wise. Still just waiting to get this phone consultation with Dr. Towbin. I really think Jerry's increase in medication has helped him. But I feel I can never be sure what is going on inside. It a common conversation among heart moms that their children had few or no symptoms when they were in heart failure and their life compromised. I don't really think anything will happen to Jerry anytime soon and I do think I know what signs to watch for. Today he shocked me how much he ran around the house and kept up with Isaac and did not seem to be having too much trouble. But later he came up the stairs and was really out of breath and kind of sprawled out on the floor for a minute. Hard to tell. Looking forward to some time when no one in the house is sick and to warmer weather!

Wednesday, March 16, 2011

Just another cold...we hope!


Jerry started his cold last night. He is a little lower on energy but really seems fine. He just will hardly drink or eat anything. So far today he has had bites of a "raman noodle sandwich (the dry noodles left intact right out of the package!)," 3 mini Popsicles, a sip of juice and 2 ounces of formula. I don't know how he has the energy he does have! I ended up having a pretty bad bronchitis and I am so glad he does not have that!

My favorite brother picture.

Monday, March 14, 2011

whew...seems fine today

Jerry seems OK today. He woke up a lot last night but just to drink formula. When John was with him when he woke crying the time I spoke of below, he was very sweaty. I checked his heart rate before I went to bed and it was really low. The sweating and the low heart rate could be a concern or could be nothing so I will probably just check in with the card today. He seems great today so far though. UPDATE: Cardiology nurse said those heart rates are ok for him although the low rate with the fever and crying last week is a little odd but since everything else seems fine it is ok.

Sunday, March 13, 2011

Couped Up for Nothing!

Jerry had a great day today with activity level and eating. Until dinner, when he refused to eat anything and suddenly got pretty fussy. He went to sleep quickly before 7 (even with the time adjustment) so I was a little worried. As I was just getting out of the shower I heard him crying and John was with him. He's quiet now. I am thinking he is going to get this chest cold thing that I have that has been seeming a little worse today. Isaac has been coughing more again but doesn't seem sick. I have laryngitis and am pretty out of breath and tired. I have tried to be careful in how close I get to him but now I am so afraid that he is getting it. He would have been better off this weekend having a weekend out and about! It may turn out to not be a big deal and I am hoping that we see him get through a few illnesses without too much weight loss or impact on his heart. Hopefully he will sleep through the night (except for his usual wake to drink formula) and he is not getting anything!

Wednesday, March 9, 2011

little updates...or should I say long?


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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Thursday, February 17, 2011

Doing a little better

JJ is eating much better in the last few days....still not normal amounts but really good for him. I took him off of the whole milk we were trying to mix in and maybe it took a few days for that to have a good impact??? He has not been breathing hard in the morning or with active play for the past 3 or 4 days. Before that it was almost every day, especially in the morning. When I see these things I can just fantasize that a miracle is happening and at the next visit his heart will be better. They told me he is past the stage when his heart would improve (scar tissue resolving) but maybe he can at least stay stable and have less episodes of breathing problems. Maybe the increase in heart med is helping him. So many maybes.......

Sunday, February 13, 2011











Still trying to connect with Dr. Towbin...the specialist in Cincinnati. So for now we are just status quo and happy for every day without a flu or virus. Mostly Jerry seems OK. He often breaths hard in the am and doesn't have much energy. He still sometimes runs around like crazy but seems to stop himself when he is tired and out of breath. His eating is pretty horrible lately. It generally goes up and down but he is usually interested. He just can't seem to take more than a few bites sometimes no matter how badly he wants whatever incentives we have offered him. It is really hard to see and I am sure he wonders why he can't always enjoy eating as he sees everyone else doing. He ate about a half cup of past and butter today which is pretty good for the past week. He may be feeling better since we stopped mixing in the whole millk that was making him constipated. He still drinks his gentleease infant formula and seems to have a real problem everytime we start mixing in tiny bits of regular milk. When Isaac couldn't drink milk because of sensitivity we used rice milk. It doesn't have any fat and won't work for Jerry.

Saturday, February 5, 2011

Saturday, January 29, 2011

Day by Day

We are settling into the idea that JJ's heart is much more significantly damaged than we thought. Of course we are still a little distant from it and that seems to be the only way to still do all the things we need to do everyday. Being overly traumatized and saddened at this point doesn't help anything. We are just upset enough to be seeking all the answers and information we can. I research and read as if it were someone else I was concerned for. Jerry is so constantly funny that he makes it easy to focus on other things in our day to day life. One of the biggest comforts I have is the CCF list serve. All parents of kids with heart disease who vent, and offer support and information to each other. Truly, these people know what we are going through. Right now we just need prayers for finding the answers we need, prayers for the doctors to recognize what steps to take, and for Jerry to avoid as many viruses as possible. My instincts are telling me Jerry is good for now. I don't think that he will be in critical shape with his heart in the next few years. So we just take each day as it comes.

I wrote all that last week and never got back to finish it. Today I am waiting for a call from Dr. Towbin. He is the guru for pediatric cardiomyopathy. He runs the program in Cincinnati Childrens Hospital and will sometimes offer to talk to parents about their children on the phone or work with them and their area doctors. I wrote an email to him about JJ and he wrote back that he would talk to me on the phone. He thought he could call today so I hope he does. I am so worried about the kids interrupting me when I am talking with him. I may have to just lock them in the closet. Just kidding in case anyone is coming to their rescue.

A worrisome incident last week when there was a mix up and Jerry did not get his evening dose of heart medicine. He seemed OK except for a little trouble with heavy breathing in the am when waking. He does this sometimes in the am but it seemed a little more than usual. Then he was fine until we went to meet John at Pizza Hut for dinner. Getting out of the car he said he was sick and looked really pale. He just wanted to go home and was laying on me and mentioned that his belly hurt. I thought he was falling asleep on me and then he made some sounds that sent us to the bathroom he was very out of it and threw up a little...like trickled out as he hung his head. Very strange. John came and I took him home. We both thought he looked a little blue in the area around his mouth but he has had this before and docs have said it is OK. He laid on me at home for a little bit and then seemed fine ever since. I gave him that evening dose of heart med a little early. It is a question if that was his heart but it is good that he recouped quick from whatever it was. pics this weekend for sure!

Tuesday, January 25, 2011

A poem to speak for Jerry and others

I received this poem in an email from a fellow CCF (children's Cardiomyopathy Foundation) member.


A Life yet to Come
By David Moore

My days were numbered from the very start
I fought for every breath due to my heart
My PDA closing I started to gasp
Just trying to breathe became such a task

The medicines they worked for a couple of days
But my heart still beating like I was running a race
It was beating so fast it was wearing me out
My heart was failing there was no doubt

My parents were worried, distressed, and confused
The tears now flowing due to the news
Tomorrows the day I go under the knife
I'm not even two weeks and fighting for my life

My lactic's were climbing and my function so poor
I had not the energy to play on the floor
I'm feeling so weak I just want to sleep
Something my mom is watching is starting to beep

I can hear them talking but just don't understand
I am still comforted by the warmth of her hand
The tone in her voice as she started to speak
Something about Jesus and my soul to keep

I have my eyes closed but I still see the light
I am very little but I know something's not right
I hear my mom cry as I took my last breath
But I am too young to fear this thing they call death

The first thing I saw when I reached toward the glow
Was the figure of a man that for some reason, I know
He wrapped me in his arms and I felt so safe
I reached up to him and I touched his warm face

He spoke so softly as not to startle me so
he told me he loved me and was letting me go
He told me a story of my life yet to come
That one day my living would be witness to some

I don't know why and I still can't explain
But I opened my eyes when I felt a sharp pain
I took a deep breath and I started to cry
I looked up to see mom with a tear in her eye

Still hooked to wires and lying in bed
For some reason I am stronger and wanting to be fed
My parents don't know it but I saw God that day
He gave me more time to frolic and play

God has his reasons that some live and some die
What some parents have to endure leaves a question. Why?
I know it's not fair but I don't question the choice
I am a witness for him and I still have a voice

My heart isn't normal but it's perfect you see
Because without it there's no story, no poem about me
I'm one of God's miracles a testament to his grace
I was only a week old but I got to touch his face

Sunday, January 23, 2011

Eating...How Does it Fit in the Picture??

Jerry had that one night he was running around (see post below) and he has ate pretty well that day. Since then, the last two days, he ate close to nothing. He is still acting OK for the most part. He is happy and seems OK. But he is saying he is tired sometimes. He even told me "my belly is tired." On a funny note...when I last asked him what his belly is saying (is it full, hungry, wants more pasta), he sighed in frustration and said "Mommy! My belly is closed up inside. It does NOT talk to me." Well, OK then. I'll have to find an alternative method for getting you in touch with your hunger.

We know that in the past JJ has had trouble eating because there was no blood flow going to his stomach to digest his food and he would feel really full or sick from eating small amounts. He likely even had chest pains from eating. Then we were on the track that his remaining eating issues are mostly psychological. He had learned that finishing food or eating more than a few bites feels awful and it became a very ingrained habit. But now we are being told that his heart could be causing his ups and downs in eating, appetite, and growth. So frustrating!!!

No one can begin to understand the stress involved in the whole eating and growth issue until you have lived it. There is so much guilt involved when he doesn't eat well. Also the guilt of wondering if we have done him a disservice not giving him a feeding tube. But with that said....I really know that there is no rhyme or reason to his eating and appetite. He can chew and swallow anything but there are just days he has no desire. And I know that my instincts and my research lead me to believe the feeding tube is not right for him. There can be so many complications and he can eat. If it was a heart issue it would make a lot more sense because it doesn't really fit any other classification of eating problems such as texture aversions or behavioral defiance. The only thing that is suffering is his growth. He is not going to be a linebacker.

Hopefully, tomorrow will be a better eating day.

Friday, January 21, 2011

Running Really Fast!

Thanks to everyone for all of your concern, prayers and support on the blog and in emails. It helps so much and I am happy that I can show Jerry as he grows how many people have loved him and prayed for him. My anonymous friend that has a 35 year old waiting for a heart...I would love to connect further. If this idea is mutual you can leave your email or email me at suezchi@comcast.net

Waiting for the reports from cardiology. It may seem strange that that is the best way for me to get more information but it really is. I can decipher most of the report and look up what I don't understand. That gives me a stronger basis for figuring out what further questions I have. At the end of our 5 or so hour appointment, after we have been gone since 6:30 am, I usually do not feel I can clearly articulate my questions and just want to be done. Especially after totally unexpected news.

Jerry's heart medicine was increased at his last appointment and it seems like it is making some difference in his endurance. Not scientific of course and he does have ups and downs, but he is seems to be able to be much more active for longer stretches without being out of breath and coughing. Usually he can't walk around the block without a lot of stops and he did. And tonight he ran around the first floor circle of our house for maybe 10 minutes straight with Isaac. He was so proud saying "Look at me mommy, I'm running really fast." The calorie burning was killing me but I also love to see him so happy and acting normal. He has been more willing to walk up the stairs instead of crawling. He had been pretty consistently walking up until after the illness that landed him in the hospital. John and I just watched him in amazement thinking it just can't be true that his heart is not OK. In reality though, it is a common story for kids with heart disease and has always been true for Jerry that he looks so much better than he is. I might try to put a little video on of Jerry running around but John started running with them making faces in the camera....might of just ruined the video!

videoJust a few minutes before, Jerry had taken off his pjs because he wanted to "be naked for a little while."

We have recently made great progress with JJ's sleep too. We have been having to sit in his rocking chair while he falls asleep and have been taking turns sleeping on a mattress on the floor in his room because he was waking up screaming every 15 minutes or so all night. He has had issues on and off but this worst stage started after his last hospital stay. I cringe to think what we might still be in for.

Monday, January 17, 2011

Bombshell News

We learned at our last cardiology appointment on January 7th that Jerry will at some point need a heart transplant. I write this as kind of another person because accepting this as his mommy is just impossible. We have so many questions and are still trying to digest this so there is little more I can write. Please understand that if you saw Jerry you would not think this could be true. He seems pretty typical from the outside. He does have periods of being out of breath and has lots of trouble recovering from common viruses. Briefly I will just say his condition now is related to the fact that his heart defect was originally missed as an infant and there is scar tissue that is not likely to resolve as we hoped. His heart does not relax and fill properly causing diastolic dysfunction. His lungs are possibly damming up with what should go to his heart intermittently. The illness Jerry has had over the fall and winter that we thought were not impacting his heart probably were and each illness takes a toll. There are no children to compare Jerry too. Diastolic dysfunction is mostly a condition of older people with long term undetected high blood pressure and older people who have had several heart attacks.

We know we can get through this with all of the blessings we have had and with our faith in God's plan. Our little Jerry is sweet, funny, tough and has a lot of normal 2 year old attitude. We love him so much and will try to laugh more, sing more (he loves us to sing and dance with him every time the Mickey Mouse show comes on.....how we tire of this....but it's one joy we can give him now), and play more. More than anything he loves Isaac. It is Isaac he wants to hold him when he gets hurt (even if Isaac caused it!!), and Isaac he wants when he first wakes up.

More later as we learn more and get questions answered. Lots of photos to put on when time allows.