Just a word

Well I thought I would post a quick Happy tonight. James and I did home Pt today. And it went GREAT! He did all his exercises with min crying and then he and I played a new game that I pulled out of my brain this morning. I am always trying to get him to take BIG steps and to pick his feet up. So today I cut out some dinosaur feet out of construction paper and place them all around our house. James had to walk around the house and find them and stomp really big on them. He thought this was great. I did several versions of the game all with lots of stomping and loud silly sounds. But the best part about it all was the laughter that filled the house and my heart. It was restoring!!

Hi!

A friend reminded me today that I have not posted in awhile , so I am going to attempt a post tonight. I havent posted because I feel like all I do is whine on here lol! And I guess I do a lot of the time. But this is my place to let it all down and out. This is my refuge from the "happy face" that I sometimes I have to force on myself.  Things have just been pretty difficult and I am struggling to get all those hats in the air.

I want to make a post that shares all that James is doing right now but honestly we have hit a wall with PT. And this wall is very scary to me. We are in the postion of yet again watching other children pass by James in milestones in walking. Other SDR children reaching those milestone and getting news that I so desperatly wanted to hear. I am of course beyond thrilled for their families because they too have worked so very hard to reach these milestone but James and I just cant ever seem to climb this dang wall. We get close and I know that if any kid can do it my James can. I am just tired. I am tired of always fighting and scratching just to just to watch from the sidelines. God what is the plan? Can I just get a glimpse of the playbook?

Why cant it be just a little easy, just for one day. I dont want to cause my son pain everyday anymore. I dont want to stretch his little sweet legs and listen to him scream and telling me that it hurts and "Mommy please stop" I dont want to spend my life in a physical therapy office and I certainly dont want James to spend his childhood there. There HAS to be a balance here. I just HAVE to see some sort of light at the end of this tunnel.

I am 32 years old and I have to have hernia surgery next week because of lifting a wheelchair everyday of my child. That  is just not what I thought it was supposed to be and I have to find the balance that God has for me. I am not always the strong Mamma Bear and please know that I love my son just the way he is. I truly do! God has blessed me with a sweet loving child that has more determination that I do. I just have to find my boot strap and start pulling myself out of this pity party. Cause this party SUCKS and doesnt have cake!

In that spirit I will end on a silly James story!  I am working with James and trying to teach him how to take his clothes on and off. So this night he got the bottom ofhis shirt over his head and it got stuck ( and like any good mother I ran for my cell phone to take a pictures) I snapped a picture and as I did James sneezed. He always thinks that is funny but this time he really was laughing. I asked what was so funny and He said " My boogers bounced back in my nose" :-) Silly Goose!

Blah!

Today is just a blah of a day. Not really any reason for it to be I am just feeling the weight of several things on me today. A dear friend of mine just lost her baby boy that was stillborn at 41 weeks of pregancy. I was called to do his pictures for Now I Lay Me Down to Sleep and ever since then I have just been so burrdened for them. Last night I went grocery shopping and as I walked through the baby section to get pull ups for James I was overcome with grief. I havent experienced that in a very long time and it hit me out of let field.  I think knowing that I need to go and edit the images for the family is weighing on me. I just worry about giving the images to them and causing them more pain.

That is not something that I usually worry about. Usually I know that any images I can offer will be loved and cherished but since these are such close family friends I am just so worried about not upholding my duty.  So yeah, it is just a blah day today

9 months ago this week.. LOTS of pictures

It has been 9 months this week since James SDR surgery so you know what that means.....you, it is time for a update. Just in case you were wondering as I type that I hear the dot d.d.d.d.d.d dot sound of a new update in my head. Does that make me strange? I'm sure it does, oh well

As of last update James had been using his walker more but was experiencing some frustrations with his foot turning in on him and also just frustrations of PT in general. I am happy to say that I have some pretty exciting updates to share. I am just trying to figure out where to start. I guess we will start with some facts.

Physical Therapy Update

James' left foot is still turning in but we have a new nifty piece of equipment called a de-rotation cable that James wears when he walks that helps with that and (fingers crossed) will retrain his muscles to keep his foot straight. It isnt very pretty and can be a pain in the tush to take on and off but I do think it is helping. Here is a pick of all the new equipment and the De-rotation cable is the tan and metal looking thing that is attached to his new braces. You can also see his new braces and shoes. You are looking at a small fortune on tis coffee table so I want it to get as much viewing as possible. Thank goodness for payment plans LOL

In  private PT James has seemed to turn a corner with his frustration level and understanding of games. Dont get me wrong he is still very much a  3 year old and like to push those limits. But the crying fits have been drastically reduced. I started doing a new thing with James for his PT. I knew that James likes to have choices and his little life is so limited with PT and being focused on keeping his body loose and learning to walk that I started to have some real worry and guilt about it. SO I brought out my Elem education degree, dusted it off and started to brainstorm ways to help James feel more empowered. And the choice board was born! James therapist and I took pictures of all of the activities that we want James to do in PT ( balls, slide, his canes, the treadmill, etc) and we made little picture cards that had Velcro on the back of them. Each PT session the Pt will choose about 6 activities and stick them on the board. When James gets there HE gets to choose what he does during the session, and when he is tired of one activity we he can tell us he wants to choose something else and then we give him the board. It has been a MIRACLE board. James loves having control over his activities , but the PT and I only give him choices that we want him to do. It is a win win!! And has eased everyone stress level! Below is one of those activities, James loves this one. He gets to stick the little cars up and draw lines to match. Now to James this is a cool matching game but what you are really seeing here is PT and OT at work. The PT is working on strong tall kneeling ( which he is doing amazing at ) and he is also working on being able to reach down and pick up a sticker and bring it back up to the board. On the OT side of things. She is working on correct pencil position and being able to draw certain lines and also matching which help his eye tracking. So lots going on and James just thinks it is a fun game that "he" wanted to do :-) HeHe Tricky Mommy



And here you see our At Home version of the same activity. This is James doing his "chore chart" and cleaning the French door windows. As you can see, we learn the skill in PT but he practices it at home!!

 Now here is James doing some more home PT that is just for fun. Riding his bike. Technically it is a therapy bike but James just sees it as a bike. Mommy seeing strength building

And here is our NEWEST fun therapy. Horseback riding!! James loves the horses. He is getting used to being so high up but he is really doing well. My dad got James his very own saddle to use when we go over to his house and practice. But every Sunday James is taking what is called HIPPO therapy.  You can check it out HERE to get some more info on what the program does for kids like James

No Here are some of my very favorite pictures of James EVER. They really show just how far he has come in just 9 short months. This is James walking in to the Dollar General store in his walker. Walking in public is a huge milestone. It means that James can talk to everyone and experience the independence that other kids experience at this age. He also loves how everyone talks to him and thinks he is so cute.

 And this is just from this week. This is James standing all on his own only using the slide for balance. This is another favorite choice of James' He gets to stand up at the slide and rolls cars down so they can crash into the block buildings. Again this picture is more than meets the eye. You might see a boring picture of James back at a slide. I see 30 mins of standing strength. I see hope that one day James really might be able to break free from equipment!!

Ok now this pictures is really an after picture. James was laying flat on his back and for the first time he sat straight up to sitting without rolling over on his side to help himself. I was on the phone with another SDR mom ( btw her blog about her son Cliff's SDR journey is awesome check it out HERE ) She and I were just chatting about our awesome boys and James just sat right up. I cried and ran right over and took this picture. As you can see James was more concerned with watching his cartoons! LOL

Ok last PT update....sort of! Yes that is James on the potty. But he actually has a Pull up on so I can honestly say that I was NOT taking a picture of my son using the potty! I am sure he will still not like this one when he is grown. Can we say Prom date ammo!! But the reason I took this pic was to talk about our Potty training struggles. When you cant sit up independently you cant really sit on the potty and do what you need to do efficiently. Not something that I ever considered before James. Potty training consisted of lots of tears and frustration because I had to hold James up and on the potty. So I created this little contraption. We call it the Potty Station. It is just a step ladder that I zip tied all the potty training essentials too. They do make adaptive potty seats for CP kids but they are 2500 dollars and tha this is just not something we can do. who could!! Ok so this potty station gives James a place to put his feet and also lean forward so that he can stabilize himself to be able to stay on the potty. I pair it will a potty insert to make it James' booty size and TaDA! We have potty training success :-) the coloring books and things are just for fun. James also gets to put a new sticker ont he ladder each time he goes. AND it gives him a handle so that he can pull to stand and I can wipe and pull his pants up for him. And then we just slide it over to the sink and he turns around to wash his hands. I think I might just apply for a patent on this one ;-)

Now just some fun randomness updates. James is my little social butterfly as you can see. This is a local indoor playground that we go to with friends and he has a great time!

James on the BIG slide!

James and I went shopping and he found a Thinking Chair like in Blues Clues and of course he needed a picture with it! Notice his Little fingers showing you that he is thinking!

Cooking is a BIG deal in this house. Having a Chef for a hubby what would you expect! But at least 3 or 4 times a week James and I bake something and he is getting pretty good at helping. He can now crack and egg by himself. Now waiting for everything to cook still needs a little work ;-)

And when he is not doing the cooking, he is right under my feet in the kitchen with a coloring book telling me how to cook. This is James drawing me a picture of what he wants for dinner! I believe it was a pizza with ice cream on top!

And how do these 2 pictures go together????? Both are VERY rare things to see.