Celebrate!

Pictures: JJ at appt , fun w water. I guess I should worry about Isaac's weight too! The other day I had his and Jerry's clothes laid out. He got dressed in JJ's pants!!! He calls to me that he thinks the pants i got out for him are too small! I cannot believe he had those buttoned!

And Yes, JJ will soon have a hair cut. I know it is a mommy thing...I just hate to cut his baby hair. Daddy wants it cut badly, but I think he's just jealous of all of JJ's hair!!

Jerry's heart function is still in the normal range..the same as last time. That leaves a little mystery regarding the strange breathing episodes but all I needed to hear is that he is fine. Of course his heart is still not normal but functioning normal.

The bad news is he may have lost a few ounces and we will probably soon end up with the feeding tube that we have barely avoided for so long. It is sad to think that we just can't get our little guy to do the most normal thing...eat! Doc thinks when he is having periods of not eating well that it is due to memory of painful eating experiences when he was in such bad shape with his heart. The stomach shuts down with heart failure and then there is great discomfort and chest pain. Seems strange to me that it is so up and down. We will follow up with GI.

Our appointment went really well in that JJ was pretty happy most of the time and did not cry as much as usual for exams and echo. Actually, he hardly cried at all and didn't even throw up! He verbalized everything about going to his appointment and I think that helps him. He says the docs name, makes noises for heart echo and talks about watching Barney during his heart pictures. Oh, and talks about the water fountains and the fish in the tank down the hall.

Another Hurdle

JJ is sick with a bad cold. Isaac has a bad cough but JJ's is more nasal congestion. He is kind of miserable, not eating, and drinking a little. Probably normal for a cold...I just don't know how much he can afford to lose since he had not been eating or drinking much for the week before this. He seems ok for now.

Picture: JJ has taken a liking to being swaddled like a newborn. It is quite funny actually. It started at my mom's when he was his usual restless self and I was thinking that a weighted blanket would feel good to him. So I tried this and he was out so quick. It is now a regular thing and he will request it and have me redo it if it is too loose and he can wiggle his hand out. For anyone that understands, he has a few sensory things going on. He loves this certain method of sensory input...deep pressure on his joints (an OT may understand). He loves for Isaac to massage his cheeks and will go from crazy boy to trance like instantly. Comes in handy on the airplane!

worries

Still hardly eating or drinking. Although I must say that we were so excited today when he ate almost an entire serving of Pringles (loaded baked potato flavor). He ate 5 and 6 is a serving. He did not eat much else. As usual, he was running around playing, very happy and active, and still very ornery. He just beams and giggles when he is opening the dishwasher or standing on the couch. I don't know where his energy is coming from. He has been on Mirilax for constipation for a week. Pooping great but hasn't changed his eating. Cardiology appointment is on Wed. and we just can't wait to hear the news that everything is ok. Isaac has a bad cold. Hoping JJ doesn't get it. Feeling very vulnerable right now like we should just stay home and be really careful about germs.

Seems ok with breathing

Picture

Early January JJ LOVES snow and sled riding with Isaac!

The boots were hysterical....size 5 on his size 3 feet!

Strangely, we really haven't seen any episodes of the difficult breathing since we went to see Terri (Thanks Terri, I knew you would make him better!). Maybe once or twice I wondered if he was breathing funny and took a closer look but he seemed ok. However, He is hardly eating at all the last 4 days. This is the worst eating I have seen since a few weeks after his surgery. He is just not interested. It is one bite of this a taste of that and toss it on the floor...stuff he usually never refuses. That is concerning since he has not gained weight in 2 months...now he might be losing. His formula intake isn't great either...today so far at 9 pm, he has had 12 ounces.

We tried a 30 cal mix from whole milk and Carnation IB. The only flavor I could find is chocolate. I think ...IT HAS CAFFEINE! The two days that we were giving him a good amount of it (we were mixing it with regular formula) he was up all night. So, today we went back to regular formula and hope to get some sleep tonight.

Getting checked for the intermittent labored breathing

Jerry's breathing is concerning us more over the last few days. He has been kind of breathing odd at times since his virus after Christmas. It is subtle and then he runs around playing like nothing is wrong. Tomorrow (Tuesday) we will go see our friend/nurse practitioner Terri and see if she can identify anything to be worried about. If there is reason, we will get a chest x-ray. Terri and a few other friends were so helpful on the phone today as I pondered what could be wrong and let my mind wander back to unexpected hospital stays with minimal symptoms. presenting. Eating is not great the last few days but here is a video from a fairly good meal gone bad(caught the end of it). See, he really does know HOW to eat!

problem with posting the above and the video

Tuesday pm
Anyways, JJ checked out ok at the pediatrician. We did leave with an order for an x-ray to be done if we feel worried. It is like a broken record playing in my head (and in everyone’s ears)...Jerry was in bad shape a few times with little or no symptoms. When we went to the cardiologist when he was 3 weeks old, the cardiologist said he looked so comfortable, lungs sounded clear, EKG was ok, and that we could wait a few weeks to have the echo if we wanted. I requested to do it then...mostly because arranging care for Isaac was challenging. From the echo we went straight to PICU. He wasn't as good as he looked. Of course, now, his real significant original problem is fixed so likelihood of heart failure is so much less. So we will watch and wait to see. He seemed better this morning than other mornings so maybe we won't see it anymore.

He got it....and got over it!

Ok. This is a warning. This will be really long and full of detail. I have a hard time shortening things when I have it in my head what I want to say. If you know me well, you know that I talk like this too! Yes, John just loves this about me. If you want the short scoop...Jerry is fine as far as we know, next echo is February 17th, weight and growth problems being further assessed. Now you can proceed to the pictures and videos! The rest is for friends interested in the details of the last month and for my own journaling.

Last post, we were praying that JJ would not get the fever and virus that Isaac had when we first got to Cleveland for Christmas. We were fortunate enough to get through Christmas Day, but JJ was sick at night the day after Christmas. His fever reached 104 at least and he was pretty sick. We took him to the ER to make sure he did not have pneumonia. It is so hard in these situations because I want to be cautious and not take any chances but I am always so optimistic (or in denial!) and just don't want to put him through any procedures that are not necessary. I was just thinking..."his heart is doing better, it's just a fever, Isaac got better quickly and so will JJ." We were able to get his fevers down when we followed advice to give him a little extra motrin. His x-ray showed no pneumonia but showed hyperinflation, which gave the doctor concern that he was having trouble breathing. He was having some trouble breathing with the high fevers, but it was hard to tell how worried to be. His nose was very congested so it is hard to differentiate and in between feeling awful, he was running around playing a little. There was discussion about giving him a breathing treatment but we decided against it. I explained that he seemed to be breathing fine at the time and he probably would not be if I forced a mask over his face for 10 minutes. The kind doc agreed and we were allowed to leave with instruction to return with any breathing problems or decrease in fluid intake. After another day he started having longer breaks in between fevers but did decrease drinking. We just wanted to go home. John was scheduled to work the Monday following Christmas but we could not think about the drive until Jerry was doing better. When his fever started getting better we were not sure we could drive as sleep deprived as we were. It was a toss up as to whether or not he needed IV hydration. I (optimistic!) figured his fever was getting better and now he would drink better. We finally made the trip home and it WAS rough. Jerry was verry uncomfortable and was crying a lot and batting at his head and ears a lot. I got him in the our pediatrician the next day (New Years Eve). He was barely hydrated and had ear infections. The pediatrician being positive like me, must have figured that he would start drinking once the antibiotic kicked in. Of course all of this time I am worried about his heart but know that nothing except an echo would ease my fears. So Augmentin was the drug of choice for the ear infections. I gasped as the doctor told me this but held back saying anything...unfortunately. I knew this was the one that gives most kids horrible diarrhea. Sure enough JJ had it nonstop for 2 days and had a very painful diaper rash. I called my friend Terri (our Nurse Practitioner) on a Sunday twice trying to figure out what to do. We got the antibiotic changed and used some left over prescription cream we had for his rash. Another rough couple days worrying about JJ losing hydration and weight. After that he began eating and drinking pretty well again and I think we just skimmed by going to the hospital again. On one hand I am glad we did not push more for IV hydration because he got through it and did not need another scary hospital experience. On the other hand, deydration is one of the biggest risk factors for his heart regressing and he has the double risk because of having multiple blood clotting disorders. I since emailed with his hematologist and found out that he really should be hydrated sooner than another child because of the risk of blood clots. I am still worried a bit that the illness caused some problem with his heart. Since then, he sounds congestion at night when sleeping and his breathing is odd at night, when he first wakes up, and a few other times. On the contrary, he is doing laps around the house with his brother "run, run, I-I" run run with Isaac.

A fun side note in the realm of stress...In the ER Jerry sang through his tears and sniffles and got oohs and aahs from all the nurses. He sings some of the words to popular nursery rhyme songs. He always manages to say goodbye to the nurses while crying after his monthly shots too!

Weight and growth continue to be a concern. He is eating much better then he used but not usually a normal amount. He throws up often when he is upset. We were at the GI doc yesterday and will try another method of 30 cal formula (carnation IB with whole milk) and Mirilax in case part of the problem is constipation. He is pretty stuck on the yucky taste of formula and does not go for the flavored stuff so this is a tough hurdle. We will go back to GI in 3 weeks. I guess if things are not better we are looking at celiac's disease (we love bread and grains in our house so that CAN"T possibly be it!!) or maybe an endoscopy to see if anything else is wrong. We will see a nutritionist in the mean time to really add up about how many calories he is getting. I guess I will take a picture of what food I give him and a picture afterward of what is chewed and spit out, what is on the floor, what it is in his hair and she'll figure it out from there! ha ha. I was so proud of JJ at Dr. Kagalwalla's (GI). He became anxious entering the hospital (I think he just knows the look..and the elevators give him a clue) but then calmed down and played in the waiting room while I undressed him for weighing. Entering the clinic room put him over the edge and he threw up several times (I'm getting better, I got it all in the sink!). After he was weighed and the nurse brought some toys in for him, he was so happy and let the doctor do a short exam without any crying or fussing, he was smiling and liked trying to say "Kagalwalla." His weight was 18 pounds and 14 ounces (a pound less than 2 or so weeks ago). Scales can vary, but he wasn't gaining I guess. I was kind of surprised since I thought he was eating pretty well. All of the thyroid tests we did came back normal.

We had a 5 day visit in Cleveland from Sat the 23rd until this past Wed. It was great! No one got sick!! I think that is a first. We had bought these tickets when Southwest was having a great sale...$25 each way with JJ still being free! We will be looking for another deal like this so that Daddy can take the boys and give MOMMY the break!! To be home alone......ahhhh. I do love visiting and especially love having the kids see family and friends. The hardest thing about being here away from family is not really having anyone to share joy about the kids and all the "exciting" things they do. We have great friends here but everyone is busy with their own and it is just not the same. So visiting Cleveland always gives me a taste of that closeness that I miss. When we saw Gigi's (my mom) van pull up to get us, JJ and Isaac were both so excited! JJ clapped and yelled "Gigi Yea!!" The closeness I feel to my dad when I am there is bittersweet. I just can't be there without spending some time in his office in the basement. I love seeing his last writing in notes and all of his certificates of accomplishment. Next visit to Cleveland, I have to find a way to see some friends. I always think we will, but time goes by so fast with family and trying to keep a nap schedule.

One of the best Christmas gifts I got was from John, but hidden in a family white elephant exchange. It was planned that I would be last to pick the one package left. I thought it was just a package brought for the exchange so I was quite shocked to find a Carnival brochure and itinerary. I was thinking "who could afford to throw this in our $20 exchange and we can't go on a cruise, we have 2 kids." Anyways, I soon realized mine and John's pictures were pasted into the (very outdated) photo. I was perplexed for several minutes while I also noticed the kids pictures pasted on. When I realized the we were going on a cruise WITH the kids I asked if anyone wanted to trade.....after all, it was a white elephant! Surprisingly, no one took me up on it. Actually I was very appreciative of John's thoughtfulness and ability to keep a surprise. I think he would admit, now, that his thoughtfulness was more "impulsiveness" as he found some incredibly good deals. We are all excited, but a bit apprehensive about all the travel with our two active and fragile boys. Since John is taking all of these vacation days, hopefully we will not run into any situations this year where we need him home. We will be gone 8 or 9 days as we will spend a few days on each side with my brother in Tampa. We will get to see cousin Dougy and the new baby cousin Brady!! All of the travel and various sleeping arrangements could prove very stressful but we are determined to have realistic expectations and a fun time. There will be plenty of activities for Isaac but nothing for JJ...he's hanging with mom and dad unless we can find a babysitter on board. Any advice from seasoned cruisers would be greatly appreciated!! The boys have been excellent on the plane rides we have done to Cleveland so if they can just extend that a little longer we should be good.

Well, I have had the luxury of being at Panera typing away on this post. Very therapeutic I must say. Being away seems to be the only way I can focus on this when there is much to say. I will try to select a few pictures and videos to add. Thanks to all of you for continuing to think of us and for the emails to check on us!!

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!