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.

A great day!

JJ had a great day! He was pretty happy "eating" for all of his meals. It is progress for him even if he is chewing and spitting out the food and not crying about the prospect of eating. Total today he ate 4 Ritz crackers (maybe 3 after you add up the crumbs he left), 6 or so noodles, couple teaspoons of butter rice, couple bites of yogurt, and pretzels of course. He ate some chicken, hot dog, and peas but mostly spit that out. The really good thing is that he is at 26 1/2 ounces of formula for the day (now at 10 pm)....that is big progress. Maybe he won't wake us up to eat tonight!

He is getting back to a normal schedule and is climbing all over like a crazy hair baby. He is really tired of me telling him not to pull up and not letting him walk around much...one more week of that. He is very silly and funny and his playfulness is contagious. He's picking up the pace with his crawling to keep up with brother and a whole new world will open up in a week when we let him go with the walking.

I had a short but much needed nap today...thanks Molly Madden! The exhaustion has just started catching up with me I think. John is working tomorrow since he took off during the week for the appointment. Hopefully, some respite time on Sunday to catch up on things.

Mostly good news!

What a day. We left at 6am for our appointment and thought we were doing so good. When Jerry started crying in the car I looked for the bottles to feed him and we had left them at home! John thought I grabbed the bag and I thought he did. I won't give you the rest of the details on how that conversation played out! Anyways, we were more than 45 minutes into our drive and had to turn around. Otherwise we had no formula and no medications. We were very late for our appointment and Jerry cried a lot of the way back to the house to get the bag we forgot. Stressful.

The appointment went pretty well. Jerry let our sweet nurse, Linda, pick him up from the stroller to "go play." He screamed for getting his blood pressure and laying down to measure length but was really pretty good for the echo and his EKG. Even when he was upset about something he got over it quick and was fairly friendly. It is good to see him leaving some of his anxiety.

OK. The important news. His heart looks a little better and is heading in the right direction. Dr. Gossett showed us film of Jerry's heart before surgery and from today. It was hardly moving before and was really huge. Now his heart is getting smaller and is actually squeezing. It is far from normal but still good news. We are decreasing two of his medications because the doctor thinks he may not need the full dose anymore and maybe he will not be as thirsty for water with these meds cut down.

The bad news Jerry lost weight according to the records. He weighs 15 1/2 pounds. They are giving us 2 more weeks to see if he starts gaining and then we will go from there. We will go to the pediatrician in 2 weeks and back to CCMH on September 4th.

Our appointment was long and exhausting. We headed for lunch and then took the boys to the Lincoln Park Zoo. It was a perfect day. We felt like a normal family and Jerry was so happy and "normal" all day! Besides the fact that he wanted to get a bath in every water habitat he saw! He even ate really well (4-5 big noodles, piece of bread, mostly that he was just happy to join us!) at a dinner. Now I am exhausted and not feeling great...just lack of sleep probably. Hopefully things will keep improving and we can relax more. Adding photos tomorrow.