More Exciting News

Okay, so it’s been a few days since I posted, not the next day like I said.  Sorry!  The other exciting news that I wanted to share was that last month I talked to Zach’s PT about bracing options and doing what we could to give him every chance possible to walk.  I am fine with him being in a wheelchair but if I didn’t give him every possible chance to do more, to see what he would do with it, I would never feel like I did enough.  And he is such a strong stinker. 

So we went to an orthotics and prosthetics office last week with both his PT and OT.  We were late and frazzled by the time we got there but they were all really nice and the specialists came in and evaluated Zachy to see what bracing they thought would be best.  He has hip flexor movement, especially in his right leg, which means that he can bring his legs up towards him.  But he doesn’t straighten them out well and really can’t go completely straight because the tendons are really tight.  They considered all of that and discussed using HKAFO’s (Hip, Knee, Ankle, Foot Orthosis) or RGO’s  (Reciprocating Gait Orthosis).  Basically the RGO’s come up more into his waist and help him stand without his bum sticking out, they keep him straight.  The one guy looked for a video on YouTube to show me what they looked like.  When it finally loaded and we were able to see the whole thing, instead of short clips until in stopped to load more, I recognized the little boy from the Baby Center Spina Bifida Kids board.  I was really exited and checked the name of the title and it said, Grant Walking with RGO.  It was so cool to see someone that, although I don’t “know”, I am familiar with through this awesome board.  And to see darling Grant using the same thing that they were talking about for my son. 

They had an HKAFO on hand that was about his size and just to see how he would do with it, they rigged up a little temporary cast to it and were so impressed that Zach just lay there patiently while they were casting him.  The PT had brought a reverse walker and so when they were ready, they stood him up with it.  The look on his face was priceless.  It’s not like my good camera wasn’t in the car, but of course I didn’t bring it in and I couldn’t run out and get it right then.  So the phone pic is as good as it gets.  But it’s as good as it needs to get.  It’s awesome.  And so is Zach. 

With just a little help from his PT, he took about five teeny-tiny steps, but he totally knew what to do!  We were a little teary-eyed and even the specialists were really excited.  They still felt that an RGO would be better and, though bulkier, the right direction to start out with.  But he could move up to HKAFOs with a lot of work.  For now, they will mostly be for therapy, but I think it’s an awesome step in a great direction. 

We have to do a lot of stretching of his legs between now and his casting appointment to try and loosen up those tendons and get his legs to straighten out more.  It’s interesting because we are never sure exactly how much he feels there, but has complained a couple of times and tonight when I was stretching him while lying on his tummy and pulling his leg up a little, he actually started to cry, “Owie, Owie!”  So here we are with more equipment being ordered (PLEASE get approved really quickly so we can get it before the end of the year and not have to pay any extra!), and a lot of exciting baby steps towards great things.  I feel so blessed to have so many resources out there, including the BabyCenter board and blogs of other families who inspire me to look for more and see all that can be done to help our awesome kids!

So Very Exciting!

We have had quite the exciting week! 

First, Zach’s wheelchair was delivered yesterday morning.  I am honestly having a hard time adjusting to it because I had pictured something smaller, but I know that it is a great thing for him.

As soon as Shane brought it, Zach went right over to it and wanted to get in.

 

He was so cute and excited to sit down.  Then he had to show Shane his horse.  And that it makes noises.

 

Kim, his physical therapist, was there to help with any adjusting and all they had to do was move the footplates down one notch.  He was ready to go!  Off course, he knew how to work it like a PRO because he’s had his stander for a year!  The chair is longer and a little heaver so it’s a little harder, but he’s already doing better than yesterday.  At first, he just kept going round and round and round the kitchen island!

 

Do you think he likes it???

Here’s our handsome little man!

 

“Cheese!”

We went outside to wait for Jaiden to get home from school. Austin still didn’t really know what to think about everything, but he was still really good about not letting Zach wheelchair roll down the driveway and into street.  He was actually panicked about it and holding on, which made Zach mad! :)  He wanted to go!

The color of the chair is a little muted while inside, but outside, it sparkles like we thought it would!

I told Jaiden that they were going to bring it while he was at school.  He has been so good about wanting to help Zach walk and asked if it would.  We have been having quite a few conversations about Zach lately, as he is trying to understand why his “baby” isn’t “perfect” as he says.  But he still loves him so much!  And is so excited about things that can help him.

 

 

And here are all three of the boys, all making faces, because that’s their favorite thing to do for pictures right now!

This is a big step and is going to require some adjusting but it has already been great for Zach.  He can now reach things on the counter and table and get into drawers… and lots of things.  When they took him out for a few minutes to adjust something yesterday, he kept pointing to it and telling Carlos,

“Papi, I want sit there!”

 

Watch tomorrow for our other EXCITING news about Zach!

Happy Fall from a Funny, Cute Guy!

Did I say cute?

 

Did I say funny?

 

Because he’s pretty much all of that and much more!

Oh, and his wheelchair ship date was supposedly today.  We’re all really excited to see what that brings!

“Big Boy” Bed

Okay, so it’s a toddler bed, but it was a big step, mostly for me.  Carlos has wanted to switch him from the crib for a long time because the other two boys were in beds at a younger age.  But that was because they had to be as we needed the crib for the next baby.  I was enjoying the fact that Zach stayed in bed when I put him there and didn’t want to add that battle to our bedtime, which, as I have to do it by myself almost every night, can be very stressful.  After talking with Zach’s occupational therapist about climbing into bed on his own and then transferring once he’s in his wheelchair, I decided that it was time.  I didn’t realize how excited Zach would be.  There are a lot of pictures, but they really tell the story all by themselves.

      

Such a sweet boy!  And he has done great every night and at naptime.  He’s always excited to go to sleep and even the few times he’s not, he still stays in bed.  He gets out by himself and can almost climb in by himself.  He did fall out the first night.  I heard a little thump but thought it was one of the other boys bumping the wall in their sleep.  A minute later, Zach came scooting out with a huge pout on his face.  And that boy has the biggest pout I’ve ever seen!  He cried a little when I put him back in but did okay the rest of the night. 

I think it’s just one more step in helping him to become independent and able to do whatever he wants.  I need to remember that he is my little boy now, not my baby!  And he definitely talks enough to help me remember!  One of his favorites this week is, “Don’t Mommy!  Mommy Don’t!”  He’s also discovered Diego and LOVES him!  He even sings, “Diego, Diego, Diego.  Go, Diego, Go!”  It’s so sweet! 

You May Think He’s Falling Off….

 

….but he’s actually pushing up…

 

…and onto the bench!

 

Zach is getting so strong in his upper body, he’s surprising all of us.  He has started pulling and pushing himself up onto things all by himself, some even quite tall.  He really doesn’t bear weight on his legs, but he is learning to get himself around wherever he can.  We are all so pleased with his progress!  And, as you can tell, so is he!

 

“CHEESE!”

This is the chair

This is the Quickie Zippie GS.  It is shown with the reverse wheel configuration that Zach will have.  The chairs are made to last about 5 years and insurance usually won’t pay for them more often than that.  Some parts may have to be replaced but the frame can be adjusted to fit him as he grows.  It will have push handles that can fold down.  The rims are going to be different but I can’t find a picture of them.. but they will be a little more “cool” looking.  It won’t have the arm rests and will be a sparkly blue color.  Oh, and it has to have a headrest (that can be removed) and a separate harness because they’re required by the school district for bus transportation when he gets to that point.  Did we make the right choice?   Aaaahhh! 

I just want what’s going to work best for him, but I also want it to be something fun and not so traditional looking.  I know that looks shouldn’t be that important but they are to me.  I want it to be something cool and different.  But again, he’s only 2 and by the time that matters more to HIM, it’ll be time for a new chair.  Is it just MY image I’m worried about?  Is that awful?

The Great Debate (at least it is for me, in my mind)

I have been debating for a long time about whether to discontinue this blog and just do our family blog.  As you can tell, I’m having a hard time keeping up with this one.  After all, Zach is part of our family and his Spina Bifida affects all of us as a family.  But I also feel that it’s important to have information and posts dedicated just to him and his struggles and triumphs, in the hopes that it might help someone else going through the same things. 

What do you think?  I obviously need some help with the decision!

We also ordered his wheelchair a couple of weeks ago.  I have a lot of mixed feelings about it, partly because we went into the meeting basically knowing what we wanted and ended up ordering something else.  I think that it will be better for him for now, we are getting the Zippie GS.  We were going to get the Little Dipper by Colours. One of the things that was really important to me was how the chair looks and it was a fun, sporty, lightweight chair.  We decided on the Zippie GS because it has a reverse wheel configuration which will bring the wheels more up front so he doesn’t have to reach back so far.  It is a little heavier and more traditional looking and I need to remember that it’s not all about the looks.  Maybe when he’s older it will be more important and that will be a better option for him then.  Ahhh.  I just have to convince myself of that. 

We are excited that it will help him be more independent and more involved with the other kids.  While his brothers are pretty good about playing with him, sometimes they get running around and Zach will just catch up to them when they turn around and run the other way.  It breaks my heart when he wants to be in the middle of things and just can’t keep up.  While the chair is hard for me emotionally because it solidifies everything we’ve always known, I think it will be really good for him. 

He is getting stronger everyday and his upper body is amazing.  He still can’t bear weight on his legs but is starting to move his right leg a little more, learning how much control he has over it.  That has helped as he is still working on going up the stairs all by himself.  Now that he can get that right knee up, it’s easier to pull up.

Well, let me know what you think about the blogs, I really would appreciate any input anyone would be willing to give!

Of course I can’t leave you without a picture.  Here is the cute little stinker with his new “Cheese” smile.

Randomness

Zach got this little drum and other instruments for his birthday.  It’s fun to strap onto his stander and give him something else to do while in it.  He’s also figured out he can use it as a basket.  I actually bought the material a couple of months ago to make him a basket and have found some cute ideas online but I’ve promised myself I have to finish another project before I can work on it.

 

We need to get out the swimming pool more often, especially in this heat!  The kids all had a blast.  If it weren’t so much work to blow up and take down!

 

He climbed these two cement steps by himself!  We were dog sitting and he really wanted to get up and play with the dog.  It took some work but I let him do it and he did!

 

We went to the park with cousins.  We rode bikes, had a picnic and played on the playground.  Zach always loves the swings!

 

 

 

 

 

 

 

He’s really good about his naps and still sleeps in his crib.  It’s a debate as to whether we should put him in a toddler bed or not but I still enjoy the fact that he stays put when I put him in bed!  Sometimes he just has played too much and will fall asleep on the couch at a time other than nap time!

Two {2}

Zach turned 2 this month!  I can’t believe he’s so big!  He’s had lots of check-ups this month too… The Spina Bifida Clinic and all of the urodynamic tests.  He’s doing great and we still don’t need to cath!  Yay! 

He had his regular well-child visit where the nurses said those were the easiest shots they had had ever given (because the put them in his thighs and he doesn’t have any feeling there).  His big brother, Austin, on the other hand was not at all happy with the shot he got at the same appointment! 

He also has his Early Intervention (EI) service plan coming up next month so he had to have a health eval. today and tomorrow they’re coming to do his general evaluation. 

I think he’s used to being poked and looked at and is really good whenever we have to do all these things.  I have noticed that the day after clinic, he is always clingy and whines a lot.  I don’t blame him with having to see so many different people in one day!  He’s an absolute charmer when we’re there though!

The physical therapist at the clinic and his EI physical therapist both think it’s time to start looking at getting a wheelchair, so now we need to start researching that.  His arms are really strong and we think he would do great with a really lightweight chair, now it’s a matter of finding one we (all) like! 

He’s talking a lot and I need to write a list of all he says!  He is putting words together and I would say that most, if not all, are commands and demands!  He definitely knows what he wants and how to ask for…um, demand it!  He’s also figured out that when he’s playing with other kids, especially older ones, that all he has to do is sit there and point and say what he wants and everyone with heed his beck and call!  It’s pretty funny to watch “his highness” direct the affairs around him!

I’m pretty sure he’s saying “Cheese!” here!

He’s a typical boy who likes to throw things… …with his still cute and chubby hands…

And he doesn’t like to hold still…

…which I think is awesome because he has so much initiative to go wherever he wants, disability-disashmility!  He’s all over the place!

He’s obsessed with belly buttons (…umm…yeah…)

And gives the sweetest, biggest pucker-up, kisses!  (That’s not his full pucker!)

We love you, our handsome Zach!

Thanks for coming to our family!