Communication: An ART

Have you ever noticed that babies are very skilled at communicating? Even without words... When hungry or tired they cry... when happy they may giggle or babble. There are so many little ways of communicating. We know what they want or need. We know they love us. This special form of communication is what I love about Crew. Developmentally, he has global delays. Verbally he is improving. Socially he is improving and I am thrilled with his special way of communicating with me. He verbally says "hugs" and will either hug you or kiss on the lips. He recently even started kissing his therapist on the lips too! When I ask him what he wants to eat I hold up the food item and say do you want this and he will either push it away or giggle. The answer is clear. When his brothers are too wild he grabs their faces. When people start yelling or rough housing... he screams or cries. I've noticed that Crew is very aware of contention and will immediately protest. Excitement produces wiggles. The spirit calms him and he chooses to be reverent. And recently.... after two years of coaching.... he learned to wave HI! I love it! He gets this big smile on his face and says, "MOM", lifts his arm into the air and awkwardly flaps his little hand back forth. PRECIOUS! I couldn't be more blessed.

Our followup visit with Dr. Rehab

We went to our semi-annual followup visit with Crew's rehab doc today. She is always so positive. Said he is making great progress.. he looks stronger and is definately moving more. The spasticity is there but not severe. I was thrilled when she suggested that he might benefit from some oral baclofen. While I am a little concerned about the possible side effects, I'm feeling okay about giving it a try. She prescribed a very low dosage. The baclofen helps reduce spasticity. We will try it and watch to see how Crew is affected. The question is "how much is he using his "high tone" or "spasticity" to his advantage. Sometimes its hard to distinguish between his strength and the spasticity. So we will see... If he is still able to function we will go through some intrathecal baclofen tests in about 4 months to see if he is a candidate for a rhizotomy in the future.

Rhizotomy is a type of surgery used to lessen spasticity. The surgeon operates on the nerve roots leading to sensory nerves in the legs. An opening in the lower back exposes the nerve roots in the spinal column. Next, the nerve roots are divided into their smaller rootlets. Each of these rootlets is stimulated with a small amount of electricity. When a muscle responds abnormally to the stimulation, this rootlet may be surgically cut. This, in turn, reduces spasticity.

This surgery is major and permanent. Its scary. But the outcome could mean the difference between walking or not. As I was sitting in the waiting room, I met an adorable 7-year old girl wearing her little purple DAFO's and walking quite swiftly with just one crutch. I commented to Dr. Rehab that I thought it was so neat how well she could move about. Dr. told me that she just had a rhizotomy one year ago. Since then she has gone from where Crew's at developmentally (which is walking 10 or so steps at a time with his walker) to cruising with just the one crutch. Her success story gives me hope......

One last summer getaway...

Four days and four nights on a boat. Sunscreen, bottled water, junk food, 5lbs, skiing, kneeboarding, tubing, fishing, swimming. We loved it all... except for the additional 5lbs due to snacking. Grandpa was kind enough to host this summer getaway on his houseboat at the lake. It had been 4 years since we were able to to go. Captain Crew's first time to drive the boat! Doesn't he look great! DH showed H how to fish for the first time. They had much success. Nine fish within the first hour. Way to go H! S had fun skiing and kneeboarding and I even got to ski for the first time in I don't know how long... maybe 8 years. It was fun watching attack of the mouse learn to kneeboard. I'm so jealous. Crew loved the water and he loved sharing a sleeping bag with me. So lucky! We slept on top of the houseboat under the stars. The nights were calm and peaceful.... well at least for those of us on top. Attack of the mouse and her DH have a few stories to tell about creatures disturbing their sleep. Watch for details...
 

Another form of therapy...

This is it! This is what I've been anticipating all summer long! It's finally here.... Therapeutic Horseback riding! Yeah! I really have been looking forward to this all year. The area in which we live is quite rural. There aren't very many opportunities for "extra extra curriculum activities". Don't get me wrong, we have soccer, baseball, football, dance, gymnastics, karate etc, etc. But for these advanced forms of therapy... it's kind of hit and miss. Crew has been fighting sleep for the past 4 days. He wouldn't take his nap. I tried twice and he cried for an hour both times. Then low and behold, an hour before we needed to leave he finally crashed. I had to wake him to go to therapy. He was still a bit groggy when we plopped him on the horse. The helmet they provided was slightly big. It kept flopping forward, shielding his eyes. He cooperatively held onto the horse and they walked, one volunteer leading the horse and one on each side to keep Crew upright. Around and around they went. Each time they passed me I would call out his name. He couldn't hear me. *frown* After the 4th or 5th round he finally hears my voice. He lifts his head, peering under the helmet...searching the faces.. then he spots me. I snap this picture. Crew lays his head down on the horse and sobs. On sob after another. Tears soak the horses mane. He can't stop crying. It was so sad.. yet kinda cute. I was tempted to whip out my camera again and take a picture of him laying down on the horse (for blogging purposes), but instead I pull him off the horse and try to calm him down. Maybe next week will be better. 

My little Darth Vader.

H is my high spirited son. He loves to have fun and make people laugh. Last night he was setting out his clothes. Last I saw him he was laying out the shorts & shirt. "Good idea, H... that's a really good idea", I exclaimed! Later, after he had fallen asleep, I went in his room to check on him.... and this is what I found. LOL! 

Therapy or Addiction?

When I started blogging less than 4 months ago I had no idea how much fun this could be. I wanted to "document" the progress of my 2 year old son who has multiple disabilities. I craved relationships with other mothers of children with disabilites. After all, this isn't what I signed up for..... or is it?! I have found a fabulous network of other mothers who are going through similiar trials. Their writings have inspired me! I have laughed and cried as I've read their individual blogs. I've found Crew's twin 1000's of miles away, little Jack. I've prayed for children in other countries. It's just amazing! I have found my little outlet, my therapy. My addiction! LOL. I have found a cirlce of SAHM's who make me laugh. Many of you have brought so much fun into my life. Some of the posts I've read have been so hilarious, they too have made me cry:) I've found awesome parenting techniques & ideas. All in all, it's great! Recently, I've encouraged some family members to join me in the blogging world. It's a great way to keep in touch with loved ones. Two of my SIL's have joined us. I am so excited! Check out their sites:
Attack of the Mouse and Sweet Days of Life. Thanks to all the bloggers out there who have enlightened me in one way or the other.

I'm Jammin

This picture was intended for the previous post. S & H wanted to make sure it was included because Crew is so good at his "job" of being the worlds cutest little brother.

Family Cleaning Hour

I stole this idea from TXMommy. In an effort to teach my boys how to work, I've tried job charts, check lists, room assignments etc. Those all work.... well sort of. I decided to give "family cleaning hour" a try. We started on friday and I loved it. The boys are still young enough that they need me right there to keep them on track. We all started cleaning in S's room, moved to H's room then finally the main living area. The boys were really good sports about it and we accomplished a lot. This method of all working together is more fun and more productive. I can show them how it needs to be done and remind them where things belong, etc. It doesn't matter who's room it is or who made the mess because we are all working together for the same amount of time.


S mopping the kitchen floor.




H loading the dishwasher.

I have a cute picture of Crew moving to music. (Unfortunately Blogger is giving me fits today and I give up on getting that last picture loaded). We parked him directly under the stereo where he immediately started "jammin". His job is to keep things fun which he does well.

I'd have to say the Family Cleaning Hour was a success for us. I will be doing it again. Thanks TXMommy for the idea!

This has never happened before...

I couldn't believe it! I gave Crew an Oreo and left the room. I could hear all kinds of happy noises. Then all of a sudden, it was silent. I was a little worried at first.... I ran into the kitchen to see if he was okay and was amazed to see this cute little person. Zzzzzzzz.....

What music do seven year olds listen to?

I don't know about your kiddos but mine are still young enough to be satisfied with the CD's that dad bought clear back during his college days. H thinks that listening to U2, Erasure, & suprisingly enough Mozart is cool! Grandma A gave H this fab CD player! H loves it! Mom loves it too because it means less fighting and eliminates the "I'm bored" statement. What do your kids listen to?

Long nights

Crew has never been a good sleeper. The nights when he sleeps through the night are few and far between. As I understand it, this is normal for some children with special needs. The reason why is a post for another day. For the most part, I guess I've mostly gotten use to it. The part I haven't liked is what Crew expects of me when he's awake. After I pick him up he indicates (by fussing and squirming) that he wants me to walk. Okay, I don't know about you but when its 3 am the last thing I want to do is walk around carrying a 20+ lb boy. Sometimes its all I can do to not tip over with exhaustion. However, I am here to report that for the time being I think we have finally passed the "walking around at night" stage. During the past 4 nights (during Crew's awake time) he has allowed me to lay down with him in my bed or on the couch. In fact, I believe he actually likes it. He snuggles real close with his face next to mine and I can smell his hair, feel his soft cheeks and watch him drift off into sweet slumber. The problem is getting up off the couch without waking him. Hmmm......... Okay, all of you parenting experts out there.... I don't even want to hear about all of your sleeping techniques. I've already heard it multiple times from the pediatrician.... how I'm providing him with a positive reward... blah blah blah. Yes, I have tried the cry it out method and he will cry for 4+ hours people. Besides he is just so dang cute. How can I resist?

A year older...

We celebrated H's Birthday this past week. He is the big 7 now! It was a fun weekend. Movies, swimming, picnics and presents. What more could a little boy want? H is our fun loving jokster. He loves people and is happiest when everyone is getting along and "having fun"! While playing with his new toys after the friend party, one of H's friends said, "Here hand that over to your best friend in the whole world"! This kid, J, is a little overbearing at times. H replied, "your not my best friend". OUCH! I held my breath.... "my family is", he finished. Wow! I was so happy. We've been trying to teach the boys that family is most important. As a family, we are here for each other.... we are friends. I guess it finally sunk in. :) HAPPY BIRTHDAY H, WE LOVE YOU!