BITS -N- PIECES VOL.5

I just had to post so that all of you would see the tweeks I made to the blog. It’s so much more colorful and inviting. I hope you like it as much as I do.

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Even though we are still 47 days away from Alex and Evan’s birthday, I have already started the planning. The invitations are done (handmade) and ready to be mailed. Some of the paper products and decorations have been bought and the menu is all planned. Some people think I am crazy for planning this far in advance, but people don’t understand that my free time to do these things is limited, so waiting until the last minute is not an option. The theme this year is Mickey Mouse – which is going to be super fun. I really enjoy planning parties and I am so excited that I have two little ones to plan for!

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 I am excited to share that Alex has been rolling over more. It’s never been an issue of him not being able to do it – he can – he just chooses not to. But lately, he has been rolling to his side more and I have been encouraging him to roll completely. His biggest problem was getting his arm out from underneath him. He has now figured that out and gets really excited to roll over because he knows what a great reaction it gets. He doesn’t stay for too long, but it’s a big accomplishment for him. He is still working on his sitting, which he can do as well, but if he gets excited, he’ll throw himself back.

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Unfortunately, we still don’t have the gait trainer. What a process….that is taking FOREVER!! We did get a walker from a friend so he can scoot around the deck outside and play with some toys while standing – which is great.

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The boys have really enjoyed spending more time outside – especially on their swing set! My grandpa built it for me 30 years ago and my Dad brought it over and set it up for us. It has their toddler swings on it now but it’s ready for regular swings on down the road. I am so happy to pass it down to them because they will never get to meet my grandpa since he passed a few months before they were born.

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This past weekend, we were able to visit with Alex and Evan’s Great Aunts and Uncle. They LOVE seeing the boys and always get a show with Evan. This time he decided to chuck his spoon across the dinner table and in the process chunks of hot dog went flying in the air. I thought Aunt Rosalee and Aunt Carolyn were going to choke on their food they were laughing so hard! They got a picture last year holding the boys and wanted to get another one this year to see the difference. This was as good as we could get thanks to Evan.

Evan really likes Uncle Claude and wanted to sit next to him for a bit at the table.

We all had a really nice time despite the flying food and can’t wait to see them more this summer.



All About Evan

I am just in love with my kids. Yes, they can drive me absolute mad sometimes, but then they smile or laugh or do something out of the ordinary that just makes all the stress and frustration not seem so bad.

This post is going to be all about Evan.

Evan is my little comedian. He LOVES to make people laugh (especially his brother) and he looks for reactions in people which is even cuter. He is so independent and plays so well by himself (he actually prefers it). He loves to explore and try new things. He is so adorable and can be a little teddy bear when he wants to be. He isn’t crazy about heights or spinning around and we can only swing him so high on the swing. He only likes it when the moon roof in the car is opened half way and he occasionally gets mad if I change the radio in the car when it’s a song he likes.

In addition to all of the emotions I have and feel for Alex and his CP, I sometimes have guilt when it comes to Evan. There are times when I feel bad because I do spend more time with Alex (stretching, helping him sit, working on things, holding him and taking him to therapy) none of which is Alex’s fault. Although Evan is very independent, he still needs the same attention and love. Don’t get me wrong – I don’t ignore him, I just wish I wouldn’t feel so bad for not having as much one on one time with him like I do with Alex.

I also discipline him more than Alex so I always feel like I am yelling at him. It obviously hasn’t sunk in yet that he is a boy – and he is all boy. He explores and is out to destroy.

With all of that being said, I am so proud of Evan and all of his accomplishments. He is such a smart little boy and I truly enjoy watching him grow and discover new things. He has such an awesome personality and he loves Alex so much – and it shows!

Evan’s newest thing is blowing on Alex’s belly! He did it for the first time last Friday and I just about peed my pants when I saw it. I was on the phone with Eric looking down into the family room when I witnessed it. It was so adorable! He’ll do it every now and then if we ask him to. He also just started gargling liquids. Mostly when he drinks out of his cup; I have no idea how he discovered it, but that too is funny.

Evan can be very aggressive and he is full of energy, but there are moments where that boy will just melt my heart. Sometimes he will come over and give me a hug or kiss; sometimes he’ll come over and rub my head softly, or if I am on the floor with Alex he will back up and sit on my lap which is usually followed by him turning around and smiling at me. When it’s bedtime, he wants to cuddle with me (sorry Eric) and have me tuck him in.

He is growing up fast and I just wanted to share a little bit about my boy Evan. He is amazing and wonderful and he is my son.

How I was chosen for Alex

I came across this video and wanted to share it with you. I will admit that my faith has been tested more than a few times in the past 22 months and many times I have wondered why I was picked to be a Mother of a special needs child. This gives me a clearer picture, a better understanding of it all. Enjoy.

How God Chooses a Mom for a Disabled Child

http://youtu.be/yT4OHc3nXBs

What a difference a year can make

It’s been awhile since I have written, so let me follow up on a couple of things.

Alex’s gait trainer is in process and I say in process because I am not sure exactly where we are at with it, but the paperwork is being done and hopefully we will have it for summer! It’s been such a circus trying to get people to do their jobs. But I think we are on our way.

Alex was approved for six more months of Outpatient Physical Therapy with his insurance (YAY!) so we are set through October.

I have been continuing to work with him on picking up small foods and self feeding. He is doing great picking them up and getting them TO his mouth, it's getting them IN his mouth that is a problem. No worries though because we just keep working on it.

It’s already been a year since Alex started Therapy with Early On. (Early On is a state funded program available through our school district that provide services such as PT, OT and Speech Therapy to children with developmental delays) I had to meet with the ladies from the school the other day to do his goals and paperwork for next year. So much has happened in the last year it’s hard to remember all of it. Eric and I videotaped a conversation we had the other night about all of Alex’s accomplishments we have noticed in the year. I was a bit down after talking with his therapists because I always feel like other people make me feel like Alex isn’t as far as he should be. Well, when you compare him to a normal developing 2 year old, he’s not, but when you really look at all he has done this past year, he has come so far. I never make it sound like I am disappointed in him because I’m not, but it’s like they want to make sure I am aware that he is no where he needs to be. DUH!

That boy is so strong and I am determined to make sure he gets everything he needs. There are so many success stories of children with CP out there. People being told their children may never walk or talk and they do. That is my hope for Alex. He may not do it until he is 3 or 4 or even 5 but dammit, I am determined to see my son walk and to hear him talk.

Last night he couldn’t sleep so I cuddled with him for a bit and I told him how much I love him and how I am going to do everything I possibly can to help him and have him live a normal life. I told him I will never let anyone hurt him or his brother and how I wish with all my heart that I could change things for him but I can’t.

I cry more than I should over this and it’s not always because I am sad, it’s because more than anything I want him to be ok.

I know full on now what it’s like to be a parent, to worry about my children constantly and just hope that they will grow up alright in this crazy world. It can be the best and worst feeling in the world – sometimes all at the same time. I wish I could constantly protect them, but I can’t because that’s the only way they are going to learn is if they are out there becoming who they are meant to be.

Today I was sitting with Alex in the backyard in the grass (something he wouldn’t tolerate at all a year ago) and Evan is across the yard telling Eric how to trim the bushes (LOL) and I can’t believe they are going to be two years old in two months. I watched him as he walked toward me and he seemed so grown up but then my eyes panned out and he was so small in the big yard.  And then there’s Alex. My little man who couldn’t sit on his own long enough a year ago for me to snap a picture of him is now sitting in the grass on his own…if only for a short period, it’s still long enough for me to take a picture of him. These are the moments that I am tucking way back in my memory so that I will always have them to reflect on.

Alex

Evan

What a difference a year can make...

BITS -N- PIECES VOL. 4

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My frustration with the Doctors and Specialists is growing by the minute. When we went to the Doctor a couple of weeks ago, I forgot to ask for a script for the gait trainer we want to order so I called last Monday and left a message. They say on the message to allow two business days for them to respond and here we are nine days later and still no script which means no gait trainer for Alex. I hope it comes through this week so I don't have to drive down to get it in person.

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The past two days of therapy, Mr. Alex has been a little stinker to his therapists. He is coming into his own little personality more and more and he isn’t afraid to show it. He absolutely hates four point (bearing weight on all fours) He can do it, but doesn’t like to and he has expressed that very clearly both yesterday and today. Overall Alex is a happy kid. He smiles, laughs and cuddles 90% of the time. But lately he has been expressing his displeasure not only in therapy but in what I like to call “Evan Interference”. This is when I am either assisting Alex in sitting or standing while he is playing with a toy and Evan comes up and wants to play to. Sometimes, Alex is in the right when Evan steals the toy or plays too aggressively, but when he is just there wanting to play alongside his brother, I have to explain to Alex that he needs to share.

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Over the past six months or so since Evan has been walking, I have had to discipline him a lot more than I have Alex. Obviously with Alex not being as mobile, he doesn’t really get into much….with one exception: The blinds. We rearranged the boys’ room awhile back so that Evan was away from the window (and the blind cord) and we put the changing table in front of their window. Every time Alex is on the table, his little fingers dig into the blinds and he pulls on them. I always say his name in a lower tone so he knows I mean business, and his face is priceless. Sometimes I have to turn my head to keep from laughing or smiling because he is so cute because he knows he is in trouble. Like most toddlers he has a short term memory so this has become a daily discipline.

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Speaking of blinds, Evan has a new obsession with the ones in the family room. It’s kind of funny because this is definitely something he gets from me. Our family room has three windows and if you open or close the blinds on any of the three windows, the other two have to match! It makes me laugh just to think about it! Every morning now, our routine is to go around to all three windows and open the blinds. Tonight, Eric closed one and Evan was right there pointing at the one next to it saying blubber words to close it. It took him a few minutes to realize that the third window on the other side of the room was still open, but he made sure to tell Eric to close those as well. People who know me know I like balance as well, so this is something that Evan has gotten from me! It’s also probably why I had twins. One child would have been unbalanced for me!

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Today in Alex’s OT session, he practiced picking up small food and attempted to feed himself. This is NOT an easy task for my little man. He has never been able to do it on his own, but I feel like now is the time for him to get started. When food is on his tray, he rakes his left hand at it and if he does happen to scoop up a piece or two, he instantly drops it. I haven’t had the patience to sit and work with him like I should, but it’s something that needs to be done. I don’t feel like they have focused on it as much as I would like them to in his sessions, so I suggested we start today. I was very impressed with his first attempt at it. It took him most of the session to work on it and after many failed attempts he scooped a little goldfish up off his tray and put it right in his mouth! Of course I cried and so did Jen (his OT) which made me cry even more because it just shows how much he means to her and how much she cares.

My little heartbreakers

Last week in Alex’s PT session we tried out a new gait trainer called the Mustang. It was super nice and we are waiting on a script from the Doctor so we can go ahead and place the order. This trainer will help Alex become more mobile as well as help him stand a little more often than he does now. He didn’t do a whole lot of walking in it that day, but it seems like a nice fit. It glides nicely and looks comfortable for him. It’s a very long process with insurance approval but I am hoping we have it by June so he can roam around outside with it.

We also saw the Physiatrist last week as well. I don’t know who these specialists think they are, but I have had just about enough of them. If you recall, our last appointment with this guy didn’t go well either and this was just the icing on the cake for me. We waited 45 minutes to get into his office for him to just rush us right out of there. Back in December he suggested that Alex wear his Benik vest a little more often to see if it helps with sitting and he wanted to order him night splints and do some exercises on the ball with him. He made NO mention during our appointment last week of any of these things. He never asked us how things are going or if we should continue or not. He just suggested yet ANOTHER brace for Alex and mentioned how his feet cross/scissor when he stands him up. Alex rarely crosses his feet when we stand him up. Yes, his feet are very close together, but they don’t scissor. He went on and on about this and how he doesn’t know what our PT is doing and if she is working on this issue or not. Well, he should know because she sends him reports, but I am sure he reads those just as well as he reads Alex’s chart.

We are going to this guy so that he can help guide us through this process with Alex but every time we leave there, we leave unsatisfied and confused and it shouldn’t be that way. So, we have decided to switch to the other Doctor in the area and see if we have better luck with him. I am planning on making that appointment in the next month or so. This is such a ridiculous process just to get a little guidance and help with our little boy but no matter how frustrating it may be I will never stop fighting for him.

When we left the appointment, we took the boys to lunch and then to the mall to walk around. Evan is quite the little ladies’ man. He was flirting it up with the girls working in the stores and even went into one store and bee lined it to the fitting rooms! He is hilarious! These girls just eat it up – they love him! Don’t think Alex is left out, he quietly sits in the stroller and after Evan makes his grand entrance they turn to Alex and he flashes his million dollar smile and melts all of their hearts. I think I may have two little heartbreakers on my hands.

Those little heartbreakers are 21 months old today. I can't beleive it.

BITS -N- PIECES VOL. 3

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The Detroit Tigers opened their season on April 5^th here at home. In showing ourTiger spirit here in the Williams household, I bought the boys new shirts for the summer. Here they are waiting for the game to start….even though they have no clue! It was too cute not to post. The Tigers ended up winning their home opener and are off to a pretty good start this season. Go Tigers!!

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We took the boys to the Zoo on April 6^th. It was a nice day out and the week ahead was going to be chilly and rainy so we decided last minute to take advantage and do something fun. They had a pretty nice time and since the weather was cool, a lot of the animals were out that we usually miss during the hot days of summer. We got to see the Lions, the Polar Bears, the Grizzly Bear, Giraffes, Gorillas, Zebras and many more.

The boys at the Zoo 4.6.12

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We celebrated Easter with my family on Saturday April 7^th up in Frankenmuth, MI. I mentioned in a previous post that Frankenmuth is a little German town about an hour north of us. It was a beautiful day so we got to walk around a bit before and after dinner. We even got to see an old friend of ours; Mason the horse. Mason was the horse that pulled our carriage when Eric proposed to me. We haven’t seen him in 7 years and he was working that day so we got to see him and get our picture taken with him just like we did back then.

 Eric and I with Mason

The Bavarian Inn Restaurant, Frankenmuth Michigan

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Grandma wanted to keep the boys overnight for us this week, so Eric and I had a full 24 hours without the kids. That’s the longest we’ve been away from them since they came home 18 months ago. The last time we had a night away was in October so this was much needed and very much appreciated. We got to go out to dinner and a movie and didn’t have to hurry home to pick the kids up. We even got to sleep in a little which was really weird! The house was so quiet. They behaved like angels of course and weren’t all that excited to see us….what’s that about?

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Alex saw the Physiatrist this week and we have decided after this appointment that we are ready to try someone different. There is another Doctor in the area that we are going to try and see what he has to say. Our current Doctor makes us wait an hour in the waiting room and then rushes through the appointment and we always leave confused. It shouldn't be that way. Alex is what matters and we have to make some changes that will suit him better.