Thursday, May 29, 2008

Jack's Walker

Jack's PT was finally able to find a walker Jack's size. The shopping cart was working well but it wasn't as stable as it should have been. Jack wasn't too interested in it at first but yesterday he really took to it! We started to put him in it every time he took our hand to walk. It clicked yesterday that he can actually go where he wants and he doesn't have to try to convince mommy and daddy to follow him. We took the walker last night the The Boatyard Grill to celebrate our anniversary and Jack gave us the best present ever! He walked around on the deck of the restraunt in the walker! It wasn't busy but the people that were there seemend to enjoy how excited he was about it. We also learned a valuable lesson. We have to take away Monkey in order for him to hold on with both hands. He seemed to be ok with it. Later that evening we took the walker to Wegmans and let him go. He walked around the store for half an hour on his own! He even followed us as we shopped! It was so cute! We are so proud of him!

Today I took him outside and he walked in the walker on the driveway! I couldn't believe that he actually did it! We also took it to the library and the park today. He loves his new found independence. He acts like he's been using the walker for months. As soon as he figured it out he took right to it and went off on his own! Today at the park I was talking with friends while Jack was walking and he started going down the path paying no attention to how far he was getting from me! He just kept going and as I came up behind him he did a little jump step and tried to get away! It was really really cute!!

This is the best thing we could have done for him. We have seen an amazing change in his personality. I am so happy he feels so independent!

Sleepy Boy

Last night Jack was a very tired boy! He had woken up at 4:45 and went the whole day without a nap. By 5:30 he was pretty much gone. Philip and I, the good parents that we are (wink wink), decided to video tape him. He wanted to watch Moose so bad but he was just too tired. It was super cute! Check out the video!!

Thursday, May 15, 2008

Surgery Update

So here's what happened...Jack coughed all night long. In addition he woke up screaming at 2 am. I immediately picked him up and his little body was shaking. He calmed down for a minute or two but then started this involuntary jerking and screaming. We weren't sure if it was pain or a seizure or what. It happened a few more times and then he fell asleep.

When we got to the hospital this morning there were green rivers of snot running down his face. No matter how often we wiped the rivers kept flowing. When we got up to the reception desk on the surgery floor the nurses took one look at him and went to get the anesthesiologist. He came in and said he was uncomfortable doing the surgery in his condition but he wanted to speak with the surgeon before they sent us home. The surgeon wanted to see Jack before we left but he was in surgery so we were going to have to wait an hour. They had a blues clues movie on for Jack so we said OK. He came in about 40 minutes later and agreed with the anesthesiologist and declared the surgery cancelled. He wanted to talk to our pediatrician to change his antibiotic. So while he was off doing that the nurse gave us some pedialyte to give to Jack so we did a bolus. About 30 min. later the anesthesiologist (I haven't mentioned that he didn't speak english andwe couldn't understand a word he said) came in and told us that they were still going to do surgery but a different one. He wasn't able to give us any details he just wanted us to give consent. We of course refused. We weren't going to give consent to an unknown surgery when a few hours earlier he was very uncomfortable giving him anesthesia. We wanted to find out what the procedure was. I went out and paged our pediatrician directly because I wanted to know what they talked about. Our pediatrician wanted him to have an ear fluid culture which needed to be done under anesthesia. He believes that even though the infection is in his sinuses the bacteria would show up in the ear fluid. When we finally talked to the ENT he said that if they were going to put him under and make a hole in his ear drum to collect the fluid they might as well slip a tube in there. We started to talk about his secretion issue and I wanted to know what hadchanged in the last few hours to make them think Jack would be fine. A few hours before they were adamant that it was not safe to put him under. Why the change? Our ENT said "I'm going to step out of my doctor role for a second. Do you want my personal opinion?" Of course, I said yes. I completely trust him. He said "If this were my child and I was in your shoes I would not do the procedure". That was enough for me. He said that right now we are managing Jack's secretions at home and it was clearly not affecting his lungs. The ENT said that if we did the procedure today we would have a 20% chance that his respiratory status would be compromised. 20% is a lot! So we packed up Jack and brought him home.

I hate having that feeling of knowing that you have to make a decision and neither option is a good one. Luckily in this situation we had the option to walk away. I know Lesley was just talking about this with Ameile's trach. It is so incredibly stressful. Before we talked to the ENT for the last time the anesthesiologist was sort of pressuring a decision. Philip and I got into this huge fight right there in the room because I took something he said the wrong way. When you have such an intense stress you snap easily. We kissed and made up. :-)

One thing that did really bother me today was that the very first time the ENT came to see us he said his patient was still asleep on the table. The same thing happened with Jack's last surgery. The surgeon came out of the OR to discharge us when we had become friends with the little boy who he was supposed to be operating on. We saw them take him to the OR and at that time he should have been in the middle of the procedure. I can't believe a doctor can leave the OR like that! I know there are other people there but I never want to theink about the surgeon leaving Jack on that table. I think back to all his other surgeries and wonder how many times the surgeon left him. It is so hard to think about!Anyway, Jack is now home and doing great. They are going to try to reschedule the surgery to be in 2 weeks. We'll see what happens.

Sunday, May 11, 2008

A Big Boy Haircut

I lost my baby boy today. We gave him his first real haircut today. We had trimmed it several times but it really needed to be cut. We bought new hair clippers today and when we turned them on they were incredibly quiet. We thought we'd try it on Jack. We got part of the top done but then was freaking out too much so we had to stop. He looked really funny while Philip and I decided what to do. We turned on Noggin and tried to cut it with scissors. As son as Moose and Zee came on we were able to make some real progress and we could actually do a good job! It still needs a litle polishing but we decided to get it while he's asleep. He doesn't look like the little boy he did this morning. He now looks like a handsome man. It almost made me cry!

Friday, May 9, 2008

Big Man Shopping at Wegmans

Our PT was not able to find a walker for Jack to try. Instead, she brought this Little Tikes shopping cart. Jack doesn't really use it much at home so I had the idea of taking it to the grocery store. Our OT decided to come with us when we gave it a try. We went to the furthest aisle with the least people. Jack got right down and started to push it. He used one hand to push the cart and one hand to hold on to Monkey. He didn't like to be in the quiet aisle. He wanted to be where all the action was! He walked around the store with minimal assistance for almost 45 minutes! It was incredible! At one point he even let go of the cart and took 5 independant steps to reach a Tide display!!! I was so proud of him! We'll be buying one of these carts for him for sure!

Sorry this video is sideways. I keep forgetting that you can't turn it once it is shot. It's still too cute!!!

A sad time

Mommy, why did you put me in this car???

Jack at the park

Again, this is before Jack got really sick. It has been a long time since I've been able to post!! Jack really enjoyed going to the park. We took a long walk around Cayuga Lake while Jack slept and then we went to the toddler playground. Jack LOVED playing on the structure and even sliding and walking on the woodchips! I was not in the park with my child! He was someone else that day! It helped they had musical chimes to play with. He played for about half an hour and then we went home. He slept really well that night!

Cornell Vet school open house

Before Jack got really sick we were able to go to the Vet school open house. While at the petting zoo Jack didnt freak out once! He even reached out to touch a baby chick!! He was really good as long as he was holding his moracca!

Cute pictures before the shots...