Trip to Cleveland and Updates

Seems like there is so much to say. My mom and sister came to visit a week ago today. My sister left a few days later but my mom stayed to drive back to Cleveland with the kids and I. John has to work through Christmas Eve so it would have been kind of pointless to come at that point. I could drive by myself with the kids but would like one more good trip with the kids again before I drive by myself with them again. So John is flying in tomorrow night about 6...just in time for the party. He was not even feeling great about leaving work by 2ish to make this happen but It's Christmas Eve and he will probably still be the last one out the door! So this plan works out pretty well.

On the way here, Isaac was trying to be helpful (could be sarcastic...but for real this time) and was handing Jerry this book with a writing board on it. It hit Jerry in the face and he got a bit cut on his cheek. He was bleeding and crying and there was no where to stop for several miles. Isaac at this point, has had to go to the bathroom since we passed the last rest stop 15 miles ago. JJ threw up all over himself from crying. It was awful, he's cut, bleeding, crying, and has puked and there was nothing I could do for a few more miles. We finally got into the rest stop but apparently, the bathroom reminded Jerry of a doctors office so he was screaming and clinging to me. We finally got him all cleaned up, had lunch and just bummed around the rest stop where we apparently picked up germs, despite me chasing the boys around with sanitizer. Isaac got a fever and a stomach ache the first night we were here. He is ok now and we just hope JJ does not get it. The rest of the ride went very well and it is really good to be here.

Last week we took JJ for blood tests to check his thyroid and a bunch of other things. It was traumatizing. They had a really hard time getting blood (they needed 8 tubes!) and thought maybe he was a little dehydrated. He, of course, threw up from crying so much. The next day, we took him for his H1N1 booster and he threw up again. To make matters worse, he was in a phase of not drinking hardly enough to stay hydrated and not eating well either. Today is the first day in a long time the drinking has been a lot better. He drank 22 so far today and ate probably half of normal for breakfast and lunch. He has had some really good eating the last few days. It is interesting when someone sees him eat on a bad day it looks like something is really wrong with him but when you see him eat when he wants (?) to, he looks very normal and competent. He can huge bites and has no problem with any part of eating. It is up and down so it is hard for sure to know what correlations there might be. It does seem that the ginger tea increases his appetite. We had stopped it thinking it might be making him have trouble sleeping. We started it again just in the morning. Sleeping better eating better. Bologna is the newest big eat. He has eaten a whole slice more than a few times. Also, JJ may react more strongly to teething pain than other babies because of his history.

His blood tests that came back so far are normal but there is one or two things they are still waiting for. We will be going to the GI doctor but I really hope he just gains a lot of weight in the next month and then we can avoid any more tests.

I guess we are not getting a Christmas card out this year. I guess time just got away from us . We may try for a New Years card instead. We did see Santa. I believe Jerry was pretty suspicious...a doctor with a very funny costume? Actually, he didn't do too bad. He walked close to Santa, waved to him, gave him five, and tried to engage him from a distance.

One more thing for my Dad. We really, really miss you Pops!! We are glad you are not suffering as you were last Christmas and we know you will still be with us...laughing so hard at the funny moments that you cry. The boys are going to be so much fun this year and I know you would be proud that we are not taking them, their health and the joy they bring for granted!! Merry Christmas Dad, we love you!

He really did lose weight!

At the pediatrician today Jerry weighed approximately 18 pounds 5 ounces. He was screaming from the time he saw the building so with him crying and not sitting still it was hard to be sure....but somewhere between 18 - 2 and 18 -5. That means he lost at least 15 ounces in a month. He did have a pretty big drop in consuming formula but was eating a lot more food at that time. Then we tried making 30 calorie formula with just the powder we are using now and he was hardly drinking or eating at all. It seemed to make him feel really full. So now we are going to do a bunch of blood tests to check for absorption disorders, endocrine, or metabolic problems. A little worrisome, but mostly we feel he just had a rough spurt with eating and drinking from teething or something. The doctors also believe that something could kind of trigger a memory of how hard and painful eating had been and make him not eat as much. Today he loved Frito corn chips. He also ate a lot of fruit and a few bites of bagel and pizza, but refused most other food. Now he will be sick for a few days from his shots so we will start over after that and hope he gains back all that weight in a week.

Good News

Jerry's echo showed that his heart is about the same as last time. The squeeze is in the normal range but there is still some trouble with the relaxing part (this will be there for the long term or forever). This should not be impacting him as far as the doctor can tell. It was such a relief!! His weight on this scale was only 18 pounds and 5 oz or something like that. It has got to be wrong since mine and the one at the pediatrician's would both say a little over 19. Even at that weight, the cardiologist is concerned that he is not gaining faster and wants us to return to the GI doc. I really just think it is going to take time. He is VERY active and is really just starting to hedge toward normal eating. However, he does really decrease his drinking so much when he does eat that the total calories is still pretty poor. I think he only had 11 oz today!! That is really bad since he didn't eat great (not much opportunity) until a bowl of noodles for dinner. We see the pediatrician next week for JJ's 18 month appointment and will see what the scale says then and look further. Shots next week too...maybe 4 or 5 of them!

Jerry was pretty upset during all examination today but luckily calmed down watching Barney during the echo. It is hard to see him so upset and having to go through this anxiety. There is no doubt that he remembers all the pain from other experiences and just isn't sure what to expect. He remembers where to go to see the fish we visit CCMH. I couldn't believe today he said fish and started walking, new what hall to turn down. Anyways, I know that none of the exams are hurting him and feel OK just comforting him and telling him it is just the way it is for him right now. As I have heard a few other stories of ALCAPA and knowing all of the risks there were for surgery, we really have fared pretty well and are thankful for that. I hope to teach Jerry this too as he grows older.

awaiting tomorrow

up later than I should be. Just getting a few thank yous and treats ready for some great people at the hospital. Expecting all good news tomorrow. It will be a long day. Just the two boys and I at CCMH. We plan on leaving around 6:30 to get to our first 8:30 appointment.

Goal for January is to get out plenty of well overdue thank yous!!

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.

update and pics from CCMH and RMcD House

We had a good time downtown on Saturday. It was hard to know what to do because the weather kept changing but we ended up going to Navy Pier. Between the L, a cab, and walking in the rain some we managed to get inside Navy Pier and enjoy some things. I believe while we were there someone ripped off my credit card number. Luckily "Gucci.com" was on to it and checked with us about the purchase. By the time I talked to Chase, there was another purchase at Best Buy. I am pretty sure the girl at the Churro stand held my card a little too long.

The good news is JJ ate one of his best meals ever that day! He ate so much and was so happy in the high chair so long!

He had his synagis shots on Wednesday to help prevent RSV. He will have these every month...my poor guy just can't get a break! So since then he has been not really eating well or drinking well. Today he finally did do good with the formula. He seems fine otherwise. Isaac has a bad cold so we are bathing him in purell every few minutes, which he hates.

The kids and I fly to Cleveland on Wednesday. We just can't stand to be away from Grandmas any longer! John will drive in on Friday and we will all drive home together Sunday night. I am still worried about Jerry in the car but hopefully all will be fine.

Pictures are at the RMcD House, which we are very grateful for. It was such a blessing to us when JJ was in the hospital and for this visit when we would have otherwise been driving home in rush hour after the all day appointment. JJ is quite friendly now with the staff in cardiology. Sherri is the girl giving him the toy. A little after this pic was taken he was facing the other way and mooning her! Dr. Gossett is Jerry's cardiologist in the picture. He is so kind and gentle, examining Jerry where ever and how ever works best for him. Isaac went with Daddy to get a sucker to share with Jerry.

Good News

Jerry's echo showed his heart to be the same as last time. The squeeze is in the normal range and there are no signs of heart failure. The relaxing part of his heart function is not normal due to all the scar tissue and that could cause problems but is less likely as time goes on. Everything looked great today.

We went to lunch and Jerry ate better than he has in a few days so that was good too. I guess he just gets sick of my cooking ...he always seems to eat better out! He must be teething because he has been kind of fussy, coughing/gagging, and not eating well for a few days. It was so good to confirm that it is not heart related.

After a long exhausting day, we were able to get into the Ronald McDonald House. We wanted to do some fun downtown things, but the weather is awful. This place is great and the kids are enjoying the many great play areas they have. Maybe tomorrow we will have a little nice weather. Our next appointment is in 2 months! Thanks to everyone for thinking of us and checking in.

videos and pictures.... in progress

Eating Well Today!

JJ is feeling better...no fever at least...still kind of fussy on and off. Amazingly, he hate a half of a hot dog for lunch along with several peaches and probably 1/2 cup of popcorn. He ate well at dinner too. It is such a relief and will be such a stress lifted from us if this continues. I found some pretty high cal buttered popcorn. He says popcorn so clearly...it's a crack up.

fevers but hopefully more sleep tonight

Between my coughing and Jerry's fever no one but Isaac got much sleep last night. Jerry's fever was 102.3 and climbing still after Motrin. Finally, he started cooling down about an hour after Motrin. His heart rate was high and his breathing rapidly and it is a little concerning. I couldn't put him back to bed until I saw those things improve. It does make me feel better that we got through so many high fevers before when his heart was in much worse shape.

Isaac's latest prayers...for "mommy to feel God all around her" and for "Jerry to quit asking to go to the park." JJ is quite obsessed with the park and has a park radar that goes miles when we are driving in the car. The last prayer was one for his butterflies that he hatched and let go weeks ago when I was in Cleveland. He is still very attached and sad that they haven't come back to visit him. My sweet guy...he is so sensitive, but very complex.

I have so many pictures and videos to put up but just can't seem to get to it. Probably making it a bigger task than it is. This weekend for sure!

Thanks to everyone who continues to read the blog and think of us!

shots today

Jerry was so happy at the doctor's office today. He didn't complain about any part of being there or having a check up. He has finally started trusting that it could be ok...and wham...four shots! But he did great. He stopped crying instantly and was happy again. Thanks to our wonderful nurses who team up so they can be over quick. Isaac did great with his flu shot too. Hopefully, Jerry won't be to sick from his shots. He usually has a high fever for 3 days or so.

He gained 2 oz in a week...so he's 17 lbs 2 oz. He's not eating great lately with his cold but that was much better tonight. He ate a good amount of buttered pasta and his new favorite is popcorn. I'll be searching for the kind with the most fat!

hanging in there

JJ is still under the weather with his cold. We had a few rough nights with coughing all night and me checking his heart rate! I can't decide now if he is fine or if he might have an ear infection. He is extremely fussy one minute and fine the next. He is quite the funny guy and so sweet (besides the biting! haha). 4 shots due on Monday.

Isaac said told me the other day that he said a special prayer when he was still in bed in the morning. He proceeded to tell me that he prayed that Jerry would be able to eat better. That was so sweet. He should have stopped there. He then said "I prayed that you would not be so tired of cleaning too. And for Daddy to not work so hard." I guess that is all pretty sweet. Then today he said "Since the sink always looks really dirty and your not so good at cleaning lately I washed out the sink for ya." I said "you think I don't clean very good lately?" He said, "Am I right?" So, yes, he is right!! Cleaning has so been on the back burner and life feels very busy and crazy....especially since Isaac started school. I went from dreaming about how nice the time free of Isaac's chatter would be to misery. It has just really screwed up our schedule...especially Jerry's with his nap. Hoping to get into a groove soon. My mom did tell me (when I question my difficulty with just 2 children when others (including her) have/had many more!) that we are not meant to have kids at my age. Thanks...I think...? At least I have an excuse.

He Got It

Jerry did get sick. He was horribly fussy all day on Saturday and pretty sick on Sunday. I usually would wait to bring him in but he seemed pretty bad this morning and since he had those ear infections last time I thought I should bring him. No ear infections and best of all he weighs 17 pounds!! That is great news. He seemed better this afternoon...back to antagonizing Isaac, so I think he will get through this just fine. Brace for the next illness. Actually, the next hurdle is getting through the reaction to shots he will have on Thursday. He will get 3 immunizations for 15 month olds and a flu shot. He has always had really high fevers and gotten really sick from the shots. On the other hand he somehow got through it all and he is in much better shape now!

speech therapy feeding eval

Jerry ate well at his appointment on Friday. The therapist does not think he has any oral motor difficulties or food aversions. I pretty much knew this already, but it is nice to have it confirmed in a report. It is really just a matter of time for him. He is continuing to improve as his heart heals and as his stamina for eating improves. We just hope he gains weight and gets stronger before he gets the inevitable cold or virus. Isaac has a bad cold now (first week of school!) so we are hoping JJ does not get it!

huge step with eating!

Jerry ate so well today! He ate meatballs and noodles for lunch (chef boyrdee forkables) and chicken, french fries and mac and cheese for dinner...maybe not completely up to normal toddler standards but pretty close! Then he ate almost a whole kiddie icecream cone. He will be fat in no time! He didn't drink much formula today but he will probably be up before midnight to make up for that! So behind in things to do...pictures soon.

eating and sleeping better

Jerry seemed to be doing better last week with sleeping through naps without crying and had a few long naps without waking or crying...including today! He has had a few spurts of increased interest in eating and today was GREAT. I may be getting a little too excited too soon, but he ate lots of bites of chicken, cheese and even ice cream. I have been trying to get him to eat ice cream since we got home after surgery! He stayed with a baby sitter today too so John and I could have a little breakfast date! Thanks Megan! He had a little hard time in the beginning but ended up having a great time with Megan. We went to the civic center pool later today. It was Jerry's first time in a big pool and he loved it!

There are still times I relive some very awful moments from the past year, feel anguish for everything JJ has gone through, and think about some of the reality that is hard to face. Finding out how horrible it was for JJ over the past year has been hard. Like hearing that he probably had several heart attacks and that he was in pain probably every time he ate and drank.

All of that is fading and at least balanced recently by good news, normalcy, and thankfulness for all the friends, family, and strength we have been blessed with to help us through everything.

Great News!

Today Jerry had his appointment at CCMH. The doctor showed me the echo and told me that the squeeze function of his heart is now in the normal range! We are ecstatic about our little miracle and so happy. Of course there are still concerns and his heart is not likely to ever be completely normal. The relaxing function of his heart is not good and needs monitored and treated. We are dropping two meds...lasix and dijoxin. This is scary for us but we know the doctors are so careful and would not do that if it was not for sure ok. We will go back on Oct 2nd.

Our friend (and my new adopted Chicagoland sister), Terri, watched Isaac at her house while I took Jerry. It was so wonderful to be able to focus on Jerry and so nice for Isaac who did not even want to go home with me. Jerry might have missed Isaac a little as he cried a lot for half of his echo. Isaac can sing to him or act silly and calm him right down. All was for the best for today for sure!!

JJ's eating seems to be slowly improving again especially with interest and pleasure in eating. We also may try a new 30 cal formula. On the scale today he weighed 16 pounds and 10 oz which is a little gain so that is good and all of my worries about a feeding tube seem so silly at this point. We see a speech therapist feeding specialist on Friday to see if she has any ideas.

Jerry is walking like a champ..sometimes backwards and sideways like the Michael Jackson moon walk (I don't think it's on purpose!) and I have videos to post this weekend.

Jerry meets our great friends at Office Max

Last week, the boys and I went to visit John at work. The kids had so much fun with all the toys there I wonder if John and friends ever really work there! These people have been so good to us. We appreciate their understanding for our situation and the kindness they have shown in so many ways. Jerry loved the attention of all the ladies and was quite the ham.

fat free fruits are my favorites..and a few cheetos to make mom happy!

Jerr Bear really does like fruit better than anything. He will eat several mandarin orange slices and 1/2 of a small apple. Even though it is not great calorie wise, it is so good to see him enjoy food and I think an important part of long term good eating habits and positive association with food. Although his eating continues to be of great concern, it is so good that he does not gag and throw up from eating like he did before the surgery.

In Cleveland now on Saturday night and I just checked in with John. JJ drank 20 oz today and finally ate a few bites of mac and cheese and french fries for dinner. A few days back we went out to breakfast and he ate a few bites of sausage, so I know he can chew meat type items. He has also ate a few bites of hot dog and chicken on occasion. I find myself pretty stressed at times trying to offer him enough variety of foods, textures, nutrition, encourage him to like eating, and do it all before he is tired of sitting in his chair. If I offer the things he likes first he starts off with a positive experience making him more likely to try other things. But then he may be less hungry for other things. If I offer the things he has a harder time with first, he may be fussy and want out before he eats something he enjoys...or he enjoys the 2nd round of items but is it rewarding for fussing and not eating the other things???? Such a challenge in the mix of other regular busy day activities.

walking like presurgery!

These are from a few weeks ago. He is still a little timid with walking and does it best when he isn't thinking about it. Like if he spies one of Isaac's treasured possessions and wants to make a B-line for it. He just goes and doesn't give it a second thought. Of course we never have the camera ready then! We have not been pushing the walking (we don't stop him either) too much lately because I am not sure if it burns more calories that he sometimes can't spare. Seeing him progress to walking is awesome and gives us hope for a more normal future for him.

A sign of things getting back to normal or... back to "not normal"

I am now finding time to put in some photos from weeks ago. They may not be most relevant for now but I still like to post what I have been trying find time to post for a few weeks. Isaac and Daddy are up to their "craziness" again.

I'm in Cleveland! A surprise for mom!

I haven't been able to write about coming because it was surprise for my mom who sometimes checks the blog. It started when a friend offered some airline money she could not use for a reduced price. Long story of how I determined what to do with it, but it was for sure the best decision to come alone and surprise my mom. My sister was here visiting my mom and left to "run some errands" and picked me up from the airport. My mom was pretty annoyed with Sheri for leaving to buy underwear but was shocked and so happy when I came in behind my sister. I have an awesome picture of her reaction but she won't let me post it!

It was hard to leave the boys, especially with JJ's recent weight loss but he is good with Daddy. And I will be refreshed and feel good about having spent time with my mom when I go home tomorrow. I have been so stressed and sleep deprived the last few weeks and will probably be so much better with these few nights of uninterrupted sleep. My mom and I are talking a lot about my dad and enjoying each other too.

lost a little weight...next few weeks are critical

JJ was drinking pretty poorly for a few days. Eating has plateaued at a few bites of this or that. So I put him back up to the baseline dose of his acid reflux med and took him for a weight check today. he lost 2oz so he is now 16-6. he has drank formula much better since I put him back up on the acid reflux med so hopefully we will see that continue and he will gain again. He will sometimes still eat baby food carrots so I fed him some of that with "Duocal" calorie increaser in it. He woke up screaming after going to bed. He was very sweaty, continued screaming and crying, and burping a lot. The Duocal is made of all kinds of oils and I think that just does not agree with him at all. My poor guy just can't win. In the future could be an NG tube, new formula, and/or an appetite stimulant med. Also we will revisit the feeding specialist to see if we are missing anything. He seems, tho, to have all the eating skills and he uses them for a few bites or more when he wants to or can. The ng tube would just be awful because he would be pulling it out and I believe we would have to go to the ER to have it put back in with an x-ray each time.

Lots of shots are in the future for my guy too. He needs 15 m vaccines and the a shot to prevent RSV every month for 8 or so months. Today he actually was happy to visit the doctors and did not cry about being there at all. I guess that will change again soon. Shots are not a big deal after all he's been through, but we still hate to have him keep going through more at his sensitive but so aware age.

not eating again!

We are so frustrated. Jerry ate and drank well (in comparison) for 2 or so days and now the last few days have been awful. He is only getting maybe 13 oz of formula by the time he goes to bed. He wakes to manage 16 to 18 by midnight but that is still pretty bad. He has ate a few bites of rice, noodles, strawberries and a few Cheetos but that's it! We have decreased his acid reflux med a little but it doesn't seem like he is having any problems that are obvious in that respect. Will have to call the cardiologist tomorrow or Monday. He seems fine otherwise...just not interested.

16 pounds 8 oz!

JJ is at least gaining. This was a gain of 5 oz in 2 weeks. I think it will really pick up now as he has eaten better the last 3 days. He really enjoyed mac and cheese at Pearce's restaurant tonight. We might have to get the recipe!

I have been fortunate enough to email with a woman who has a 16 year old with ALCAPA repaired, the same defect that Jerry has. She found my blog through google and commented and we went from there. She is the first person I've "met" in the same situation and it has helped a lot to email with her. I read her blog and it I have to say it was kind of amazing. I felt much more emotion (fear, sadness, tension) more strongly, than I felt going through everything with Jerry. It is like a component of detachment that serves as a survival mechanism I guess. With Jerry, I really can't completely accept what is going on and still function in the best way possible to take care of him and our family. When I mentioned this to Jackie (mom of child with ALCAPA), she understood.

Here is something from Jackie's email on the whole eating issue:
Eating was a big issue. You have my sympathy. She came home with an ng tube and had it for around a year and it took some time to wean her from it and on to a proper diet. There were days when I thought she would never eat normally, she eat tiny amounts and was so fussy. These days she eats well in quantity; it isn't very varied, but you know, she's a decent weight, well in herself so I'm not going to worry about it. She doesn't seem to remember anything of it but I think there are some underlying control issues and maybe some deep, bad memories about how eating made her feel as a baby. The drs say sucking would have given her angina so I think they must relate food to pain on some level.


It is so hard to hear about and be reminded of all the pain JJ has gone through. Of course, we were in agony already because it was obvious something bothered him about eating since he was diagnosed at 3 weeks old. It is still hard to have it confirmed and know that every time we tried to feed him he knew pain was coming. And the way he would start to suck and then back away changing his mind. My poor guy had to decide if chest pain was better or hunger pain. Tough. Hopefully, this will be all behind us soon. We are always tinkering on the edge of needing that ng tube and maybe things would have been better or easier earlier on if he did have it. But I am glad we haven't and hope we won't have to go there.

Pictures and videos hopefully this weekend.

short update

I have so much in my mind that I would like to post, but no time! Jerry is doing well (my mind starts racing with questions and contradicting thoughts every time I say that because I never REALLY know!) and is recovered from his ear infections. It turned out that the yeast infection test was negative which was good because I could hardly get that medicine in him. His eating has been very poor since the illness and antibiotic but just picked up a bit today. Still so bad but I am excited for today's improvement. I believe he ate almost 10 noodles and really swallowed them by the 3rd time in! Drank 19 oz of formula instead of the recent 16 per day. On Thursday we will have a ear recheck and a weight check. My guess is 16 pounds 10 oz. That would be a 7oz gain from 2 weeks ago. A few breathing situations have been unsettling but he is overall very energetic, very happy, and ornery as can be! More soon with fun videos.

Just a short journal

JJ is doing fine. I am glad I got him in yesterday as he seems to just be a tad worse today. Now the antibiotics and other med can kick in.

Think about my dad a lot. In case you haven't read from the beginning, my dad who passed on May 9th played a role in getting Jerry to his appointment at CCMH in time to probably save his life. I'll tell more of that story another time. Anyways, a few days ago we got on the computer live video cam with my mom for the first time in a very long time. We used to do it with my parents weekly, but had not since probably February or March. As we talked and visited with GiGi, Jerry started saying "Papa" clear as day while looking at the monitor. He remembers that Papa was always with Gigi. I guess we should never assume "he won't remember anything."

Another side note regarding Papa. My mom is having a hard time with anxiety (she and my dad did everything together) and is not driving hardly at all. Isaac came down from bed one morning this past week and asked if Papa could come back. I told him no and he said, "Well, then he must have just been in my dream." He then told me that in his dream GiGi was driving her car and Papa was with her. I thought it was very sweet and could be a little message for my mom. I am not sure it helped her much, but Isaac was happy that he had a dream of Papa.

Yes, 16.3 pounds! And ear infections.

We did a weight check as well as a check up for JJ's cold that he has had for a week. He has been pretty happy so I did not expect anything much more than a sinus infection. Always worried about his heart but feeling he was probably ok there. So it turns out he has double ear infections and some kind of yeast infection in his throat. Poor guy. So he is on 2 more meds for 10 and 14 days. The great news is that he gained weight! That is huge. I was worried since he wasn't eating anything the first few days of his cold. Here is a little video of his little brain working. I love his little face when he is concentrating! Please ignore my voice in the background!

6 wks. plus post op

This past Friday was six weeks from surgery. Wow. Jerry is doing really well. He is eating better...maybe a little better every few days. He did catch a cold recently, as careful as we are trying to be. Colds and viruses can be a much bigger deal for him than for other kids. So far, he seems fine except for not drinking or eating well because of the congestion. Actually, we are so happy to have a "normal cold." If he is not completely better in a few days we will bring him in to get checked, which we have to do by Friday for a weight check anyway. He is sleeping pretty well, but still wakes up a few times to drink an ounce or two of formula.

A few cute videos. When we wouldn't give Jerry his walker toys and he wasn't supposed to be that active yet, he started using this other toy as a walker. Now he is allowed to go and he is! He is taking 7 to 8 steps several times a day. He seems to stop when he realizes he is walking alone. It is really fun and amazing to see him like this from where he was six weeks ago! Thanks everyone!

who's gaining weight?

I am finding some time today to catch up on the blog (much more important than cleaning the house) and some other things. I have added some photos to all the back blogs in case anyone wants to peek. I was thinking that some pictures are so hard to see that they shouldn't be on but I just realized myself that when you click on them they enlarge.

Jerry is doing pretty well. No pain or discomfort and slowly picking up his eating. His water obsession has decreased since the change in his meds. I will have to way him here at home to get a rough idea of his weight gain (hopefully!).

So, speaking of weight gain, I have buying all sorts of fattening, high calorie food for Jerry. The problem is...he doesn't like ANY of it! The most fattening ice cream at Meijer - nope, Portillo's Chocolate Cake - nope, french toast made with heavy cream - not a bite. Someone has to eat this stuff that we spend money on! By the way, Laura Fu's version of the Portillo's Chocolate Cake is much better! JJ did eat some pizza that I made today. A few pieces of that with several mandarin orange slices.

These pictures are Jerry's first swimming a few weeks ago and a visit from our Cleveland friend Carla. That pool water was freezing right from the hose and I thought JJ would just put his feet in for a few seconds but he plopped down and absolutely loved his outside "bath" as he called it.