So I finally got around to taking some new pictures of Ben's hand for you all to see. So here is the first. He is now 10 weeks post surgery.

I was so excited during physical therapy on Monday. He was playing with rhythm sticks and I saw him grasping it like this. It is so miraculous!!! Hope all of this helps some. Please email me if you have any questions. My email is rockma75@yahoo.com

Birthday pictures, fun pictures, and deep thoughts!

I cried tonight as I uploaded Benjamins birthday pictures. Just two years ago Benjamin was 6 days old and fighting for his life. It all still seems so raw. I feel like there is a permanent scar on my heart that has healed but the scar is there to remind me how precious life is. Are there any other parents who have gone through this who feel the same way? At times I feel like I'm just finally getting my life back to normal, but then again what is normal. Maybe we just have a new normal. Okay, so there are the deep thoughts! Now on to better things.

Benjamin isn't able to blow, but he tried so hard to blow out his candles. This is one of the things the speech therapist is currently working on. The day he is able to blow the feather across the table you may see me doing a victory dance kinda like the football players in the end zone. I'll post a video when it happens!

There's nothing like the joy in a child's eyes while opening up presents!

I found a bubble machine for his party. He absolutely loved it. Bubbles were blowing everywhere. He just stood there in amazement.


Benjamin sat at his little computer one day for the longest time. I call him my Little Einstein. He sat there so long that he actually fell asleep and almost fell of the couch.

This is the best photo I could find of what his hand looks like now. He's in bed sleeping like I should be or I would take a really good one. I will try in the next few days.


I liked this photo because it showed him using his hand at 2 1/2 weeks after getting his cast off.

Well that's it for tonight. I'm off to sleep:-)

Gettin' better every day!

How amazing Benjamin is. He is starting to use his right hand more. Before surgery he was right hand dominant. After surgery because of the cast he began using his left hand. Now that the cast is off he is left hand dominant but is beginning to use his right hand more. Three weeks ago he hardly used it at all. Then he began using it for assistance. Just in the last few days I see him using it by itself. I would say he is still left dominant though. He is beginning to get the pinch concept. Now when I instruct him to pinch he is able to do it a little. Only on command though. I think it is so funny that I'm telling him to pinch. If my other children were to pinch I would say, "No, no, ablsolutely NO!!!" All in the name of therapy I say regarding Benjamin. That includes drinking bath water!!! My other children may need counseling someday over this issue, ha ha! I will post new pics of his thumb sometime in the next few days. Thanks for all the comments and question. For those who have been down this road and have posted, thank you thank you thank you! It gives me hope.

God bless!

Happy Birthday Benjamin!

Benjamin turned 2 today! Boy did he have fun. I think his favorite gift is his new push lawn mover made by fisher-price. He also got a sit-n-spin. It will be exciting to see what the next year has in store for him!

Ben's new thumb

I tried to update this blog over a week ago, had all the text on, was ready to post pictures and then my computer shut down and I lost all the work I had done. My life is so crazy busy, that I'm just now getting to trying again. I'm hanging out in CO Springs today at a hotel with my children while my husband is getting dental work done. Now for the update!

Ben is doing great! Getting the cast off was quite the experience. They were so worried he would be able to pull his arm out of the cast, but when it was time to take the cast off it took over 30 minutes for them to get it off. The saw was so loud which led to Ben pretty much crying loudly the entire time. It was very exciting to see his reaction when it was finally off. He immediately said, "All Done". (Side note - we are switching Ben over to a toddler bed and the other night at 2am he woke up, opened his door and came down the hallway saying "All Done". He came into our room and I was laughing so hard. Daddy got up, took his hand and marched him back to his bed. Now that he is talking he is sooo... funny!) Okay, so after the cast was off he just sat there and watched his finger move. He said "ouch" quite a few times which was probably from his hand being in the cast for six weeks. Next I had to take him to a Therapy Facility where they fitted him for a splint. This took an hour which he also thought was terrible and cried the whole time. Our little ones with VACTERL or other difficulties go through so much. I think Ben's just had it with it all!!! The surgery has been worth it though. When the cast came off, his hand still had quite a bit of healing to do. There was alot of scabbing but I think it couldn't really come off until the cast was removed. Within a week, the surgery site was pretty well healed up.

He is now wearing his splint all night and half of the day. Slowly day by day he uses his hand more. He favored his right hand before surgery, but of course now favors his left. I have discovered that he is having to reprogram his brain to do the finger/thumb pinch. I'm sure this is why the doctors prefer to do the surgery at six to nine months before the brain is programed too much. So Benjamin was 22 months when he had the surgery. He has the ability to do it, now it will just take therapy time. For anyone considering having the surgery, IMO I say do it ASAP! If they are older than 6-9 months, still go for it! These children are amazing and can do amazing things. Benjamin will figure it all out, just as he figures everything else out. He is my little man and he "wows" me more everyday!

Today, the cast comes off!

So today has finally arrived. Benjamin will be getting his cast off and we will finally get to see his new thumb. I am so curious as to how he will react to his hand. I'm not looking forward to the process of taking the cast off. My poor mother heart just aches everytime he has to go through all of this. How is he going to react to the saw that will remove the cast. Maybe he will surprise me and be in awe. Will post more in the days to come!

5 Days to go!!!

Benjamin gets his cast off in 5 days. Yea!!!

Thumb Pollicization

So what is thumb pollicization? Well in my definition it is an incredible surgery that will allow my child to perform anything that requires a thumb/finger pinch grasp. So what will this allow Ben to do? Cutting, writing, zipping, grasping tweezers, holding his bottle better, holding a spoon better, grasping a baseball bat, holding a car steering wheel to list a few. Somethings he will be able to do better and some he will do for the first time. The medical field would define it as the surgical creation of a thumb from a finger, usually the index finger. There are several techniques, but they have in common steps to shorten, rotate, and reposition muscles to achieve a functional and aesthetic result.

http://www.vacterl-association.org.uk/index.php?option=com_content&task=view&id=13&Itemid=11

Thoughts before surgery

I have to admit that prior to surgery I was 90% sure I was doing the right thing, but 10% of me kept questioning. The hard part is that it has taken such hard work to get him to where he is developmentally and I didn't want to see him fall back. I was unsure of what surgery and a HUGE cast would do to him. He has just started walking. We had been praying for months that he would begin walking before his surgery. I felt like if he could do it before, then he would slowly pick it up after. I was so nervous that if he wasn't walking it would take him forever to learn with the added difficulty of only one functioning hand and one casted arm. Well he did start walking. Just two weeks before surgery. Praise God! The day before his surgery I was having such a hard time. As a mother you worry about any surgery. Every surgery holds with it risks and you wonder what would you do if something happened and the surgery was for something that was not life threatning. But still I press on! Then I remind myself that for weeks our family has been praying that Ben would stay healthy so he could get a new thumb and here I am all worried. I needed to stop fretting and trust God. I also needed to be thankful that Ben was going to get the new thumb we had been praying for. So I changed my mindset and that night we had a celebration dinner. A celebration for Ben's new thumb!

Surgery

The day of surgery finally came. Benjamin's surgery was scheduled for 9:3o am. This meant that Benjamin couldn't have any food after 12am and only clear liquids between 12am and 2am. I actually was awake at 1:45 am so I got up and gave him a bottle of apple juice. I woke up around 5:30am and Benjamin woke up shortly after that. He was standing in the kitchen stomping his foot at me telling me he was thirsty and hungry. I knew this would be tough and it was. We left for the hospital at 7am. We had a 1hr drive to get there. Once at the hospital we went to the surgery waiting room. We waiting there for around 15 mins and then they brought us back to a room with a big metal crib. They asked many question, check his stats, gave us ped pj's and left us alone for a little while. Benjamin looked so cute in his pj's as you can see! The surgery ended up starting 1 hr late so they brought in a wagon full of toys which distracted angry (from hunger) Benjamin. The surgeon came in to visit with us. They marked Ben's hand with a marker right in front of us to show which hand the procedure was to be performed on. This was actually a bit of a stress reliever. Shortly after that, the anastegeolagist came in to meet Benjamin. I was really nervous about them putting him in the crib and taking him away. At this point Ben wouldn't even let daddy hold him. He was glued to me. They did give him something orally to relax him so when they did come to get him, the nurse came into the room with a warm blanket, took him from my arms and wrapped him up. He didn't cry until he was way down the hall. I could barely hear him so that helped out a ton! I did share some tears and they took my son. It was tough! The surgery took around three hours and then they brought us to a room to meet with us. They let us know that the surgery had gone great and we would be able to see him shortly. Not long after that they came out to get me because he was crying and every time he cried his stats would go crazy. I was able to take him in my arms and walk next to his crib all the way to his room, sit down in a chair and just hold him. We gave him pain meds when needed to keep him still and resting. He stayed in the hospital one night and was ready to leave by 10am the next morning. I was so worried that it would slow him down, but when we got home, he was starting to walk again, climbed up on the couch and also jumped on his little trampoline. After going through this surgery we decided that Benjamin is "The Man"!

Right Hand Pictures

This is a picture of Benjamin's right hand prior to surgery. As you can see his thumb is considered to be hypoplastic. Because the thumb is very underdeveloped, they cannot do reconstructive surgery on it. They will be able to do reconstructive surgery on his left hand though.

In this picture you can see how underdeveloped his right thumb bone is compared to his left.

Here are two pictures of his hand directly after surgery. I asked the surgeon to take pictures because I knew it would be possibly 6 weeks before they would remove the cast and we would see his hand.

Three weeks after surgery

So it has now been three weeks since Benjamin had his right hand pollicization. He is doing great!!! Everyday I'm amazed by how miraculous he is! He is now walking all the time. He has chosen to try to do everything he did before. There are somethings he has a hard time doing. Things that require two hands get really frustrating. He is able to drink his bottle and feed himself all on his own. I found some bowls with the suction cup on the bottom to hold his bowl still on his tray. I also bought some men's socks that are dark colors, cut them in half and use them to cover his cast during meals. This helps to keep his cast somewhat clean. We put that rubber tape wrap on his cast to give it some grip so he can use his cast to help hold his bottle. He hasn't whacked any of his siblings yet! He can't take a bath so it's pretty much sponge baths. I do put his head under the kitchen sink to wash his hair. One day I did fill a small dish washing pan with soapy water, covered his cast by tying a zip lock around it, and sat him in it to wash his body. Then I wrapped him in a towel and put his head over it to wash his hair. It worked well! Creativity is a mom's best friend!

What's next?

Benjamin's cast comes off on September 11th. What a big day that will be. He will then wear a splint on his hand for up to a year. First it will be all the time and then it will be only at night. It's hard to know what to expect without first going through it. Benjamin met with a speech therapist for the first time today. She is helping with not only his speech but also with his overall oral-motor development. This includes eating and drinking also. Benjamin has been having some issues with swallowing some foods and we believe it may be what's called a stricture in his TEF surgery site. He is going in for a swallow study on September 2nd. Between doctors and therapist sometimes life gets really crazy!!! I'm so thankful for them though. Without their knowledge Ben wouldn't be "The Man" he is today!