I know, I know... I don't post enough. Sorry.

Ben is gearing up for surgery again. I hate this. I really do. This isn't as big a deal as the surgery last year. Last year he was out for more than 2 hours, this time it should be around 30 to 45 minutes they tell me. Routine surgery, he's getting his tonsils and adenoids out and getting tubes in. Routine, except that it's Ben... it's my son... my hypotonic son. I really just hate this. That we have to put him through this and he has to go through it and deal with the pain and the recovery. Blech. Still it's for the best when it comes to Ben. I know that. Ed knows that too. Still doesn't make it easy, for any of us.

In other news in the past year Ben has learned how to walk, he's talking more (still way behind though), he was into and out of SMO's for his severe pronation, he's started "school" two mornings a week for 2 hours a day, and he's become a big brother. Big goings on for my little fella. He likes school okay. Little weirdo won't say a word while he's there but he likes it okay. He loves his teacher, Joy, just to pieces. The SMO's went over okay at first and then just a mess and he refused to wear them. I would get them on him and he would shake his feet and scream "OFF!!!" and cry. Over the summer, while I was VERY VERY pregnant, I just gave up the fight with him cause I didn't have it in me anymore. As it turns out the Physiatrist is okay with that and says that's fine cause he has really great ortho shoes he wears. We do need to get "cookies" to go in his shoes but even without them the shoes are good for him and help him a lot. So that's all good too. I mean over all Ben's had a good year I think. He's still one tough little nut but that's sort of to be expected... all things considered I guess.

Here's my favorite fairly recent pic of Ben! I took that in late July not too long before having the baby. He just looks SO big in this picture. Momma's big boy.

Some pics that I had trouble posting in the last post... these go along with THAT blog.

sitting in the waiting room as we prepared to leave for home.

eating fries on our way home!
Bad Mommy!

Tubby time! 8 days later!
Such a happy guy :)

Belly, 8 days post op

It's Over and Done!

The anxiety and worry leading up to Ben's surgery was nearly overpowering at times. I know it was for me at least. I know Ed was worried too, but he doesn't worry the way I do... we're just built different. In the weeks leading up to the surgery I was pretty much a total wreck... it wasn't pretty.

The day of the surgery was VERY long and exhausting in every way imaginable. Ben's surgery ended up being delayed for more than 3 hours due to the baby before Ben having some major complications during his surgery -- not really the thing you want to hear right before YOUR baby goes into surgery! Ben was an absolute trouper though and didn't complain once about the lack of food or drink. I was honestly amazed he handled it so well. We kept him busy and entertained and he played and had a great time. He absolutely loved the toys, especially the cars they had to play with, and had a blast. I was amazed and much relieved that he could at least have fun and play. He had no idea what was coming or that he should be nervous or scared. Isn't THAT nice? Wish I could have been so blissfully ignorant. Then again I would have taken his pain on ten fold to spare him the pain, but nobody offered me that option. So we waited, Ben played and also napped a little on Daddy's chest... until a screamer came in and woke him up . At least he got a little bit of a nap though.

Finally at about 1pm we finally talked to the surgeon and the anesthesiologist. We got to discuss our feelings on what we would prefer and on Ben's somewhat unique situation with his hypotonia and other issue's. We asked the surgeon to please come discuss options with us once they we in and we knew what we were up against so that we could make an informed choice with how to proceed and the Dr. was more than happy to do that. They finally came to take him into surgery at 1:10pm. It had been a very long morning and it was finally time. They carried him away and the new waiting game began - the even harder part.

Ed went and got us a very nasty sandwich from the cafeteria that neither of us were very interested in. Ed read and I tried listening to music, reading, and watching a movie and couldn't concentrate on anything. We got word from the desk nurse after about 45 minutes or so that things were "going well" but really... what does that tell you? It tells you almost nothing! I mean okay he wasn't having complications like the baby before him and that's ALL good and we were grateful for that but not knowing what's happening while your baby is in surgery is undoubtedly one of the hardest things to handle. Finally after 90 minutes the surgeon came out and told us what they had found. The teste WAS there but it was very high in the abdomen, higher than they like to descend them from he told us. It was also VERY small, about half the size of his normal teste. The blood vessels attached to the teste weren't QUITE long enough to reach all the way to the scrotum (they could reach but not as "far in" as the Dr. would have liked). Also with the teste being so small there would be a significant chance for it to "pop up into the abdomen again." In addition the Dr. would have to cut some of the blood vessels and there was the chance that the teste wouldn't even survive the surgery if that was done - it was possible but certainly not a gaurentee. All things considered it just seemed the better part of wisdom to have it removed. Having it removed also saved Ben from a much more invasive surgery with larger incisions and a considerably longer time in surgery. Removing it they could do all laproscopically from the 3 incisions they already had and Ben would be out of surgery much more quickly. So we told the Dr. to remove it and he told us he thought that was a good idea too. So he went back into the OR telling us it would be another 30 minutes or so. Almost exactly 30 minutes later the Dr. came out and told us that it had all gone very well and that they were "doing the packing" (whatever that means) as he left. He said that Ben would be in recovery in 20 minutes or so and we would be able to see him soon.

We called parents and waiting anxiously for word, this time was the hardest for me, on when we could see Ben and finally a nurse called out "Benjamin's parents" and we practically raced down the hall toward our baby. Finally we came upon his stretcher and there he was. His little head of dark hair, his pink little face, his still body under the blankets and all the wires and machines beeping and pulsing and doing their thing. It was eerily reminiscent of the NICU and I got a shiver up my spine... but there he was. We were told not to touch him and to just let him sleep. They said that he would most likely sleep about 45 minutes, but possibly longer because of his hypo. So Ed and I pulled chairs up next to the bed and just watched him - his chest rising and falling, his little puckered dry looking lips, his red little cheeks, his long brown eyelashes resting on those same cheeks... it was soothing being close to him again. We still had reason for concern but just being near him helped ease the fear and anxiety.

After about 10 minutes Ben started rousing. He started moving around and I realized he was going to wake up so I slapped Ed's arm and whispered "GO GET THE NURSE!" The nurse came over just as Ben rolled onto his back and opened his eyes. She told me to go ahead and pick him up but I was so afraid of hurting him I was scared to pick him up. With her help we managed to get him up and settled against me. He was miserable and unhappy and started vomitting which was upsetting but soon he settled again and slept. He nodded in and out of sleep and vomitted a few more times until the nurse finally gave him some Zofran (good stuff!) and that seemed to abate the nausea and he calmed down. After that he didn't really sleep anymore but he stayed quietly in my arms and took in the world around him. All the beeping and machines and strange noises and unusual things to look at. He was quiet but alert and aware... YAY!!!! Time passed and he got pain meds via IV and then later some oral pain meds and we waited. Waited to see how he would do and if he would vomit more and how he was feeling.

We were ALL amazed by him once he came around and wanted to do more. I lied him on the bed and let him look around and he liked that. He was looking at everything and watching people and responding to our voices and doing wonderfully. He even SAT UP before we ever got out of recovery for just a few seconds while we put his clothes on! The nurse and I were both flabbergasted! So we packed him up, got our instructions and were on our way home! In the waiting room while Dad made a pit stop Ben insisted on sitting in a chair... by himself. I had my doubts but he was so insistent I put him down and let him sit. He was obviously very groggy but he did it! I was just in shock.

So home we came to our waiting and rejoicing family. On the drive home while Ben was supposed to have only clear fluids he managed to eat 10 french fries, half a cup of apple juice and then slept a deep sleep the rest of the car ride! Poor kid was STARVING! It had been more than 24 hours since the last time he'd had any FOOD! I couldn't blame him. We got home and there was much merry making :)

Ben's recovery has been nothing short of miraculous. Twelve hours after surgery he was CRAWLING all over the place, pulling himself to standing and cruising! You'd never know he just had major abdominal surgery! We were just totally blown away! The only indication that he wasn't 100% was that he slept a lot that first day after, but beyond that no indications he'd just had surgery. Ben's PT and pediatrician were both just amazed!

Now, a week later, Ben's biggest problem is that he's teething and it seems to be bothering him! Go figure!! He's had his first tub bath, where he pulled off the steri-strips (oops!) and his incisions look like they're healing nicely. You can't even see his belly button incision at all and the incision on his right side is very small. It looks like the left incision is going to leave something of a scar but all things considered... not bad!

Through all of this Ben is reaching milestones and making strides. He's talking more. He's communicating more. He's using more signs and saying more words and seems to be trying harder to make himself known and his desires. He's learned what his nose, teeth, feet, socks, shoes, and ears are! He's playing games with us more and more. He is truly our little miracle man. I'm just so glad that this chapter is behind us and we can move forward now :)

Getting so big!

Ben is doing so great lately! We are just amazed every day with the progress he has been making.

This week he got new SHOES! I had to get him the old traditional high ankled walking shoes but then these were on sale for $6... how could I say no? He looked so big this day with his overalls and his shoes, I had to get a picture! Isn't he looking great? I have to admit he doesn't love his shoes but if he see's me pull them out he holds his feet up... he knows where they go and what they are for. He's good with them for a while but then he starts pulling at them with his hands and if you say "shoes off" he laughs like it's the best joke he's ever heard! LOL! He likes his socks off too! Just like his Momma!

He's crusing all over the place now. He can walk around the couch and the coffee table and chairs. He's doing so well. He can even turn himself around and then FLING himself headlong at Ed or I - knowing full well we will always catch him and protect him.

He got another tooth so he's up to THREE now! With his new tooth has come a new interest in regular food! He's eating shredded wheat now. He likes grilled cheese crusts. He'll eat PB&J if you cut it into strip for him. He ate part of a bagel with butter the other day! He LOVES cookies! Big surprise there huh? A kid that loves cookies? Go figure! LOL! He even ate a brownie the other day. He'll also eat small veggies (corn, peas, and such) that we put on his tray. Still no luck with meat of ANY kind though. We've tried all different kinds and he's just not interested at all. Still he IS eating more regular foods and he is more interested in what people are eating and interested in trying things! That alone is wonderful.

We're gearing up for the big surgery this week. Trying to hold it together until then. Ben started with a cough last night so tomorrow first thing we see the Ped cause they won't operate if he's sick! We have to try to get him well QUICK!!!

Pray and think good thoughts for us this week and in the weeks to come during his recouperation!

Testing

Testing Ben's new blog