quick update

A really nice extra couple of days. Every weekend should be so long. Jerry seems to be sleeping better for the most part. He had one really bad night a few nights ago where he was definitely in some kind of pain. He was kind of clawing at his face and neck and sounded a little congested so I thought for sure he was getting sick. He seemed to grab his chest a few times but with his heart rate seeming OK I kind of dismissed that. After we gave him Motrin he slept until morning and seemed fine the next day. Then he had two great nights of sleep. Naps are still bad with him waking up crying every 45 minutes or so on most days. We comfort him a little and usually can get a 2-3 hour nap in. He is eating some pretty good meals but usually just a few bites of a couple things. For a while he seemed to be drinking 4 and 5 ounces at a time but now he seems back to 2 ounces here and there. Friday's echo will hopefully confirm everything is the same or better with his heart and it will be a big relief.

A fun little note...JJ is so affectionate, funny and sweet. He is talking pretty well and can tell little stories with his gestures and vocabulary. When he runs with open arms for hugs it is the best!

So Much to be Thankful for

The obvious...Jerry John and his heart that is likely to give him a normal life! We are so thankful every day for all of the events leading to us finding his real diagnosis soon enough to save his life!

Isaac, growing strong and learning lots of life lessons through all of our experiences.

John home from work today and tomorrow. An extra few days added to a weekend does an amazing amount of good.

Sleep, JJ slept well the last few nights which is good for everyone!

My espresso machine and morning mochas to get me through the day.

Mom, doing better each day with my dad helping from above every step of the way.

All of our friends and family in Cleveland checking on mom and checking in on us.

Friends from church, such fun, caring people!

All of the doctors and nurses that have cared for JJ and gotten him to this point.

And these friends. These are true, great friends. They have supported me and given so much to me and my family through all of our difficult times. They are all busy with their own lives but have come together to help us so many times even though I can be "hard to reach" with everything that is going on. They will always be close to my heart. Little Gracie cheers Isaac and JJ every time she brings them her artwork!

There are few other neighborhood friends I will have to catch another time.

18 months today!

Jerry turned 18 months today. It is hard to see him growing up but so awesome at the same time. I feel like I missed kind of a lot of baby time with all of the health issues. He is doing really well overall. His eating is a little up and down but he seems to have one really good meal almost every day and is tolerating many different tastes and textures. He really loves going OUT to eat! He seems to really like bacon and has enjoyed cake a few times lately.

Still working on the sleep issues. There are so many factors that contribute to the problem making it kind of complex. The two big goals are for him to sleep until 7am and to take more than a 45 minute nap regularly without waking up. Naps are such a struggle and he is so happy all day without one that it is hard to be motivated to put him down.

My mom (Gigi) was here to visit and it was really nice. Surprisingly (it's kind of crazy here compared to her quiet house), she says will be back with my sister in a month. Unfortunately, I do not have any good pictures. Gigi picked out this shirt for him in the photo. It says "small in size and big in attitude." It does fit...the saying, not the shirt (it's a size 2)!

Thanks to everyone who continues to read the posts and get the details. We need good thoughts and prayers for our December 4th appointment that everything will look good on JJ's echo and we can continue on only one heart medication and aspirin. Also, we thanks to God for giving us so many good friends and family and strength to get through all of this.

Doing well but never completely free of fear

Jerry is doing well for the most part. He had some really great days of eating about a week ago... a few days were really normal toddler eating!! Nothing eases my mind like that. Then he suddenly began to eat and drink less, sleep poorly (waking at 4 or 5am to STAY awake and having trouble going down at night), and a few other funny things. Mostly he is happy and very energetic but sometimes it does seem like he tires easily or breathes a little funny. The last few days he seemed to crawl a bit or scoot on his butt instead of walking. He even seemed to have trouble pulling to stand (he is really completely competent in going to stand w/o pulling) a few times that I noticed. But a little while later he is running around and climbing the stairs a quicker than I can catch him. I just feel like until his echo I never REALLY know how he is doing. After the next appointment we will not be taking him off any more meds so I think I will feel more confident about his condition being stable.

I weighed him on our scale and thought he had not gained any weight but then he was almost 19 according to the doctor's office scale today (from 18 a little over a month ago). So I thought for sure Isaac must have been leaning on the scale (our home scale usually matches) but when I weighed him at home today I did get almost 19. That is a big relief. He can turn his car seat around in one pound! He had his synergis shots today (RSV protection...every month) so I hope he will not decline as he usually does from that. He ate pretty well (maybe half of normal?) today but only drank 15 oz.

We love the Morton Arboretum! It is a little sad because it reminds us of our free Metroparks at home (Cleveland)! We loved watching Jerry and Isaac play in the leaves and climb trees. Everything is a little more exciting since Jerry has come through his ALCAPA.

Halloween with a good heart!

Halloween was so fun. Notice John's "sick" pumpkin work. Halloween is for kids I guess. Jerry was so excited to get candy and then ate his first chocolate bar...a Twix! A bit came back out as you can see, but I was surprised he ate as much as he did...and a whole cookie too! We enjoyed some t-ball in the yard the next day. It will be interesting to see what JJ can do as he gets older. His less than perfect heart does not seem to be holding him back yet!

Jerry is really thriving! He is drinking 5 ounces (formula) at a time pretty often now. Huge for him. He is eating some food every day but probably rarely a normal amount. We are still pretty excited to see him chew and swallow 5 bites of food before spitting out. If he is still not eating better in 5 or 6 months we probably will want to look into what else could be wrong. I have not weighed him recently but believe he is at least 18 1/2 pounds. Don't his cheeks look so chubby?! Today he took a nap of 2 1/2 hours without waking up...another huge thing for him. He often wakes crying during naps and cannot settle down without some snuggles. We are not sure if that is just messed up sleep cycles, bad dreams, bad schedule (naps are kind of a struggle with Isaac's school schedule),hunger...? He is pretty out of it but not asleep. He has been sleeping great at night. He often only wakes once to eat. He is so happy and funny. We are soaking up every minute with him and always thankfully reflecting.

Isaac has been doing really well and loves school. He has not been sad again like last week thank goodness. He did say another time that he does not want Jerry to die. He added that there would be only one good way for that to happen and that is if we all died together so we could still see each other. Can you believe his little mind? My sweet, sweet, intense boy. I pray that the rest of his young childhood holds only fun, enchanting experiences for him.

Big brother says it best...heart breaking

Wish I could get these pics and videos where I want them....read below for some explanations.

First I should say that JJ seems to be doing great. He got over that last virus just fine after about 10 days. He is eating and drinking better although eating is still not great most of the time. He will eat 3 of something like he can't get enough and then on the fourth bite he just chews and spits it out. I guess he is still getting some of the calories if it is soaked in butter. Drinking is much better as he sometimes now drinks 4 to even 6 ounces at a time. Of course I will feel tons better after our next echo...December 4th, but I do think he must be doing ok. He has lost weight when he was sick but I think that is all back plus some. He keeps pulling on his belly and looking at it "how bout that...never had one of these before!"

So now, about brother, he called me in to his room after he was in bed last night. He wanted to tell me how to spell "mmmmmmmm or M and Ms." "You just put two Ms!" Then he called me again (this is not typical. He usually goes right to sleep). I kind of wanted to just peek in and say "Go to sleep!" But something told me he had something important to say. I went and sat on his bed and he began to tell me (at first with a nervous smile) that he did not want Jerry to die and that he is not happy about him going to heaven. He sobbed and went on and on about how much he would miss Jerry and that he is his "favorite" brother. It did not matter what I said, he continued to ask questions about when Jerry dies. My heart was sinking as I tried to figure out where this was coming from and what else to say. He asked if Jerry was going to have all those things that Papa had when he died. It was unclear then if he meant medically in the hospital or if he meant the funeral. I told him that Jerry's heart is better and he is going to be fine and they were going to grow up together (as I prayed that God would back me up on that). He veered off a little to talk about himself dying and mommy and daddy...he isn't "happy about anyone going to heaven." Ninety percent of it was about Jerry. He said he just wanted to go to sleep so I left and shut the door but went back in after listening by the door for a minute. He was talking (as if to someone) saying, "no I don't want him to die, why does he have to? He's my favorite brother and I will miss playing with him and I won't be able to see him. No, it's not ok." I took him down to watch a show and read a book and then I laid with him in bed and he seemed happy and fine. Then as we laid quietly he started again just whispering "I don't want my brother to die, I love him." My heart was aching. I had to go check on Jerry myself!

John and I tried to figure out if there are things he hears that would cause him to worry or if this is just the climax of everything building up that he has been through. Really, we don't talk about too many concerns for Jerry except his eating and how he needs to get so many shots. When I asked Isaac what made him think these things he just said "I was thinking of how I would miss him." He is usually pretty kind to Jerry and was even more especially so today. My sweet boy. I wish I could take away all of his worries so he could just be four.

I am going to attempt adding a few pics...mostly from Cleveland I think. The very Irish looking boy would be cousin Justin...our best blog commenter (competing with Sue Reilly he told me).. The beautiful Italian looking little girl is Dana, leukemia survivor! All of the cousins are great and we miss them a ton! Kind of embarrassed about the boys in the flannel shirts picture. Not everyone will get this but...they are doing the "daddy face." Precious.

worry or not to worry?

Little Jerry is still sick with his cold. He has lost at least 6 oz. The one day he only had 10 oz of formula and no food. He has picked up the formula a bit but is only eating a few fruit loops or crackers now. He threw up in his sleep the night that he only had 10 oz. I was starting to worry...the flu? Of course I still worry about returning heart failure even though it is not that likely. Last week he had a strange breathing episode that really scared me. It was the night he started to get his cold. He was congested and then seemed to not take a breath for several seconds and was kind of unresponsive for that time. Then he kind of gasped and cried. The doctor thinks it is probably just from the cold but could be a seizure type thing. We may have to have an EEG done for that.

Now he is up and down...feeling better then acting sick again. He has no fever so that is always a good sign. It is so hard to know if I should take him anywhere to get checked over again. It seems like he might have sinus infection but could still be just a cold with fatigue from being out of his normal routine and from playing with cousins.

JJ loved his first airplane trip! I was worried about his cold hurting his ears but he had no problem at all. Isaac was invited by the pilot to go in the cockpit and try the controls and check it out. It was very cool. Pictures to come when John brings the flash drive.