Benjamin's Big Adventure

Benjamin jammin' on his guitar.

2011-01-28T20:55:00.003-07:00

It's about time

2010-01-06T18:36:00.003-07:00

I just realized it had been three months since I've posted anything on this blog. I thought I would share some Christmas pictures. Benjamin and his little (ha!ha!) brother Justin received matching outfits. Benjamin was also given a really cool spoon as shown in the picture. Also shown is his new Thomas the Tank Engine duplo set. We spent Christmas in Arizona with my parents and had a great time. Benjamin is becoming quite the little social young man. It's so great to see him coming out of his shell in new environments. While in Arizona, we went out onto the Marine base where they have some old tanks parked. We went there last year but Benjamin was too young. This year he was old enough to climb all over them and even climbed down inside one of them. Pictures to come of that. I have to get them from my husband's camera. One of his new things he loves to do is play the Wii Fit Plus game. He loves to do the jogging one which requires him to just hold the remote and run in place on the floor. He also loves to run his little heart out while standing on the balance board for the bicycle one while I steer the bicycle. Watching him play this is so exciting since three years ago we really didn't know what he would be able to do. He has excelled far beyond what most doctors said he would. All praise to God! Benjamin heads to the eye doctor tomorrow for his six month visit. Other than that things are pretty quiet right now which I LOVE! His speech therapist has been ill so he'll have to wait to start speech therapy again. I pray that all of your New Years are off to a great start. God bless!

Happy Birthday little buddy!

2009-09-30T15:57:00.003-06:00

Happy Birthday Benjamin :-) This last weekend we all had the opportunity to visit Thomas the Tank engine at the Colorado Railroad Museum. It was a gift from Benjamin's grandparents. We all had such a great time. Today is his actual birthday and Sunday we will be having his party. Benjamin has the ability to blow out his candles now so we are hoping he'll blow them out this year. What a three years it has been, but oh the blessings we have received.

Family Fun

2009-07-27T17:30:00.003-06:00

Requests have been made that I include more about the rest of the family. I never thought about it because I started the blog to follow Ben's surgeries. So now that things seem to have settled down, I will try to include more of Ben's home life. Here is a video I filmed the other day. It was an activity that went along with our Veggie Tale Bible devotion.

The Good, The Great, and the Excellent!

2009-06-10T19:08:00.005-06:00

It's been a few months since I've updated Benjamin's blog but not for lack of excitement. Benjamin is excelling more and more everyday. Where do I start?

I guess I'll start with the GOOD. When Benjamin was just a few weeks old and still in the hospital they did what's called an "ABR" hearing test. During this test they place monitoring patches on the head to see how the brain stem reacts to different decibels of sound. After this test they told us that Benjamin had severe hearing loss in his right ear and slight hearing loss in his left ear. We've know this all along and he has shown definite signs of no hearing in his right ear. He compensates extremely well though. They wanted to do another "ABR" sometime down the road and last week was that sometime. We were able to find out more exacts on his hearing loss. It turns out that he has pretty much no hearing in his right ear. I guess you would probably say it's 90-95% loss. No surprise to us! We have never been sure of what kind of loss he has in his left ear though. They discovered that he has 50% hearing loss in his left ear. WOW! You would never know it! His speech therapist is shocked that his vocabulary is so high for having such extreme hearing loss. He was fitted on Monday for hearing aids in both ears. They are not sure how helpful it will be to place one in his right ear, but they said it's better to try one, than to assume it won't work. He will be getting his hearing aids in a few weeks. I'm so excited to see how he responds to them! If you wanted to imagine what he hears right now, stuff a piece of cotton in your left ear and then plug your right ear off as much as you can and that would be similar. The children and I did this yesterday and it was a great thing to experience. Praise God for the technology of hearing devices. Benjamin's world is about to change!

Now for the GREAT! Benjamin went to see the hand surgeon yesterday and was given a "thumbs up!" (ha ha) Everything is looking fabulous. Next month Benjamin will hit the one year mark for the surgery to give him a new thumb on his right hand and boy does he use it. It is so wonderful. He uses his left thumb more everyday as it gets stronger and stronger. Thanks Doctor Rooks and Doctor Deering. Your work will be put to good use in the years to come!

Now for the excellent... Benjamin has been working with a speech therapist for almost a year now and since day one she has worked with Benjamin on blowing bubbles. From the time Benjamin was born he was not able to suck or to blow out. This means that he was not able to blow out his candles at his 1st or 2nd birthday. Well just a couple weeks ago he blew bubbles for the first time!!!! He is so amazing. Statistics say he would never improve his oral abilities, but he's proving that all wrong. I'm looking forward to seeing him blow out his candles in September on his 3rd birthday. I'm sure I will video it for all to see.

Everyday I'm amazed at Benjamin and all the things he's accomplishing. He is sooo COOL :-) Everyone who meets Benjamin instantly falls in love with him. He is loved by all. I can't believe that he is my son and that God chose me to be his mother. I have done nothing to earn the privilege of being his mother. He truly is a gift from God!

Cotton-Eyed Ben

2009-04-01T21:09:00.003-06:00

I took this tonight at Elizabeth's Birthday party. How cute is it!

Pictures, Pictures, Pictures

2009-03-11T10:34:00.004-06:00

Taken just before leaving to take off the cast.

This is the splint Benjamin gets to wear at night and most of the day.

This is what his hand looks like now, one day after cast removal and 9 weeks post surgery.

Benjamin was being silly insisting that I take a picture of his funny pose.

The Big Day is Here :-)

2009-03-10T09:23:00.003-06:00

Benjamin gets his cast off today!!! He is so excited. He understands this time. Yesterday he said to me, "mommy, mommy, MOMMY!!!!, off, off" while pointing to his cast. I said, "yes Ben, you get your cast off tomorrow." We then clapped. For those who have never gone through the process, removing a cast is probably worse than putting a root canal in. Not really looking forward to that part. Took almost an hour last time on the right hand. One hour of constant crying can get to a mommy. Then we had to go have a splint fitted. This was another hour of crying. I'm bringing suckers today. Hopefully this might distract him just a little. If you get this before his appointment it is at 2:45 MST so please say a prayer for us!! I took this picture this morning at the breakfast table. Say goodbye to the dirty nasty cast!!!

Christine, this one's for you

2009-03-01T15:36:00.004-07:00

Here is a video of Benjamin using his right hand. He had a pollicization surgery done on this hand seven months ago.

It's a crazy life!

2009-02-09T16:36:00.003-07:00

Just when you think life can't get any crazier, guess what? IT DOES!!! So last Wednesday afternoon I was just getting ready to take a nice hot bath when I thought, "Wow, I haven't had to bring Benjamin to the doctor this week!" How nice is that!! 15 minutes later, while still in the bath, Benjamin came to me complaining that his thumb hurt (the hand that just had surgery). I looked in his cast and it appeared that there was a little white ball inside. My first thought, Ben shoved a ball down inside his cast. As I investigated I realized it was actually the pin they had put in his thumb to hold it in place. "Oh no!!!" The pin is coming out! This is not good. I jumped out of the bath and immediately called the doctor's office telling them the pin was coming out. They set up an appointment for the next morning. Oh yea, a trip to Grand Junction (1 hr each way) just what I had been wanting to do all week. So the next morning off we went, only to have the doctor tell me that the pin had been there all along I just couldn't see it before because it had been covered up with gauze. Wonderful, a trip for nothing. Then on Friday morning Benjamin woke up coughing terribly and refusing to get out of bed. He had caught the nasty cold virus the rest of my family had. At 2 am the next morning (Saturday) I woke up to him breathing rapidly, racing heart rate and a temp of 102. So off to the Emergency Room we went. Ends up he has Walking Pneumonia. Returned home that day and went back the next morning for a check-up. And I was so excited about not having any doctors appointments last week. I then ended up with three! Just when it seems like life can't get any crazier, IT DOES!!! Benjamin is finally doing better today. Ate his first meal and walked around for the first time in four days. Sometimes having a child with medical needs seems so overwhelming but in the end you look back, hear them laugh and play and it is all worth it!

Oral Therapy

2009-02-02T13:25:00.002-07:00

Audrey, this one's for you!

2009-01-25T13:53:00.002-07:00

2009-01-25T12:32:00.004-07:00

I took some pictures and video of Benjamin in therapy the other day. Thought I'd share them. The picture is with his speech therapist Audrey, they were playing with bubbles. In the video he has peanut butter on his lips. We are working on getting him to use his tongue more to lick his lips.

Surgery is over

2009-01-07T15:48:00.004-07:00

Benjamin's surgery went very well and we are already home. We showed up at the Surgery Center at 6:30 am and they had us out of there by 11:45am. We were shocked when they said we were free to leave when we felt comfortable. All I know is that what we dealt with today beats going to the hospital any day!!! Ben is now resting thanks to tylenol with codeine. The surgeon said the surgery was successful. It turned out that Benjamin had only a partial tendon out of four tendons in the thumb. They transfered a tendon from his index finger and one from his pinkie. It is possible they may need to transfer one from his ring finger in the future. Only time will tell. Glad the surgery is over and we'd be happy if this was the last surgery EVER!! We'll see what God has in store.

Reconstructive Surgery

2009-01-06T09:19:00.004-07:00

So Benjamin is going in tomorrow for his reconstructive surgery on his left hand. I'm sure there is some fancy name for it, but I don't know it. His surgery will be at a surgery center so he doesn't have to stay overnight at the hospital. We are very excited for Benjamin and what this surgery will do for him. His right hand is doing so great!!! His recovery will be very similar to his right hand recovery. He will have a cast on his arm for six weeks and then he will wear a splint for up to a year.

2008-10-14T19:33:00.009-06:00

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!

2008-10-06T22:51:00.014-06:00

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!

2008-10-06T21:51:00.001-06:00

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!

2008-09-30T21:26:00.002-06:00

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

2008-09-24T10:07:00.004-06:00

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!

2008-09-11T04:45:00.002-06:00

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!!!

2008-09-06T08:00:00.000-06:00

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

Thumb Pollicization

2008-08-21T22:00:00.000-06:00

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

2008-08-21T21:00:00.001-06:00

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

2008-08-21T20:00:00.000-06:00

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

2008-08-21T19:00:00.000-06:00

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

2008-08-21T18:00:00.000-06:00

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?

2008-08-20T14:23:00.000-06:00

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!