Wednesday, December 23, 2009
Wednesday, December 9, 2009
Friday, December 4, 2009
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.
Thursday, December 3, 2009
Goal for January is to get out plenty of well overdue thank yous!!
Sunday, November 29, 2009
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!
Thursday, November 26, 2009
Monday, November 16, 2009
Wednesday, November 11, 2009
Monday, November 2, 2009
Tuesday, October 27, 2009
Wish I could get these pics and videos where I want them....read below for some explanations.
Friday, October 16, 2009
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
Friday, October 2, 2009
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.
Saturday, September 26, 2009
Wednesday, September 23, 2009
Tuesday, September 22, 2009
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!
Monday, September 21, 2009
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!
Friday, September 18, 2009
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.
Monday, September 14, 2009
Saturday, September 12, 2009
Wednesday, September 9, 2009
Monday, September 7, 2009
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.
Friday, September 4, 2009
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.
Sunday, August 30, 2009
Saturday, August 29, 2009
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.
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.
Thursday, August 27, 2009
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.
Saturday, August 22, 2009
Thursday, August 20, 2009
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.
Tuesday, August 18, 2009
Thursday, August 6, 2009
Wednesday, August 5, 2009
Monday, August 3, 2009
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!