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.