Tuesday, October 27, 2009

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.
video video

Friday, October 16, 2009

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.

Sunday, October 11, 2009

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.

Friday, October 2, 2009

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.