Ears & Throat Junk

After multiple visits to the Audiologist and ENT we've decided that Crew needs tubes in his ears, a tonsillectomy, and an adenoidectomy (sp?). The audiologist will also do an ABR test during surgery to get an updated audiogram. His recent hearing test results have shown a dramatic decrease in his ability to hear. We are hoping its a temporary result of the negative pressure in his ears and not a permanent progressive hearing loss. My prayer is that the ABR results will show that everything is okay.

Crew's tonsils are huge. When I look in there I wonder how he can even swallow. He is mainly breathing through his mouth. He snores and is often tired.

H had his tonsils out when he was 2 and he recovered very quickly. Hopefully Crew will sail through this as well but with the additional tube surgery and other health issues we deal with I'm a bit nervous. I'm waiting for the hospital to call me back with a surgery date.

Update: Surgery is scheduled for April 6th. Good bye Spring Break:(

A Tree with HISTORY

I was blessed to grow up on the same soil that my Grandfather raised his children. The Willow Tree was planted by Grandpa himself which was the beginning of many stories to be told.

My father tells a childhood story of how his dad once used the willows to give him a "whippin" after he jumped on the back of the family pig. Lesson learned: "Pig Riding" is not acceptable. Being only six years old I assume that because it is one of those few childhood memories, the willow tree has always held a place in his heart. Ha Ha.

I remember climbing the tree with my childhood friend. Our escape from the world:)

The tree has been through it all. Years back it was struck by lightning but continued to stand. It's been rotting for years. One big branch fell to the ground and started growing again. This tree has proven to be indestructible


Dad has been concerned that the tree could fall on the horses that pasture there or one of the more adventurous grandchildren.

Last week he decided it was time for the tree to come down. On friday he tried to burn it down. It burned and burned but it didn't fall.

On Saturday, we found him with chainsaw in hand cutting that old tree from every side.
Dad had lots of moral support. We waited for the tree to fall. We waited and waited.

There was a slight breeze which was blowing in the wrong direction. It seemed to keep the tree upright even after it had been cut. Dad predicted
that as soon as the wind stops the tree would fall and he was right. The breeze stopped and we watched our willow tree come crashing to the ground.

I'm wondering now if the memories of saturday will be the last of The Willow Tree.

My boys and the nieces and nephews were there. I think Four Generations of memories with one tree is pretty cool.

Late Night Party

The weather has been so nice lately so when S asked if he could have a "late night" party I said why not! We've decided that Sleepovers are out which is a topic for a whole other post. So if the boys want to have friends over we call it a late night party and send them home at 10:00pm.

We didn't want H to feel left out so we told him to invite one friend.

I ordered pizza and we built a fire in our backyard firepit. We invited 4 boys and ended up with 9 extra kids. How does that happen? I think I've decided that If you plan a party you may as well invite the whole neighborhood or someone is going to get their feelings hurt.

The night was spent hanging out around the firepit, watching movies, and playing night games. The boys were all really well behaved and I think S had a good time.







S and his friends goofing off!












The neighbor girls who didn't have anything better to do.

TANGO TALK

I had the privelege of going to Crew's preschool today. I was impressed with the interaction he received from the teachers. There are only 6 kiddos with 5 teachers. Crew gets a lot of one on one attention. It's great!

We met with the Augmentative team. They observed Crew and talked to me about the different communication devices. There are several options. Identifying and pointing to pictures of objects/activities is an emerging skill. I feel like Crew would do well with a simple 4 square communication board. We will probably start there.

I was introduced to some amazing equipment. It is exciting to know that there are so many possiblities out there for Crew as he continues to progress. One of the latest state of the art communication devices is the TANGO. The tango is lightweight. The voice is a childs voice. Using the device, a child can say things like, "I love you", or "Your bugging me , dad". I love it! It has a digital camera attached so you can take pictures of family, friends, toys etc and program it to voice the corresponding word or phrase. It even has the option of changing the voice to a mad, whiney, or happy voice. Who wouldn't want this for their kid!

Check it out here!

Waiting for the "breakthrough"

If I've learned anything from the journey of raising Crew it would be to celebrate each and every achievement. The "BIG" milestones are few and far between... sitting up, crawling, walking etc. As a family we cheer for the little things. Over time I've noticed that S & H's awareness of the situation has changed. Their prayers are different. Instead of "Bless Crewser that he can walk", its "Please help Crew to get really fast in his walker".

In their presence its my job to be positive always complimenting the little things and making a big deal out of stuff. "Crew is feeding himself! Look how he can scoop! Check it out... he understands cause & effect (while playing with his ball popper)!"

The praise goes on and on. I am proud! We love him! He brings us joy!

And also,

My heart aches. He doesn't talk. The list could go on and on but I try not to focus on what he can't do. Yet, the pain is there and I desperately want to hear what is going on in his little head.
And so we wait, we pray and we hope for yet another miracle because the truth of the matter is, this battle can be won!

A new skill.... SCOOPING

Crew has entered a new phase where he insists on feeding himself. These spoons are awesome! I know what you must be thinking. When I first heard about these spoons from Crew's therapist I thought, "How could a spoon with holes be helpful?" Well, it really works. The holes kind of help the food stick to the spoon at least it does with some of the sticky foods like yogurt and oatmeal. Crew even spooned himself icecream last night. When I try to take the spoon from him to help him scoop the last bit out of the bowl, he fights me. He is such a big boy and feeding himself is a big deal. Kids with CP often have a hard time with wrist supination and pronation, which is basically difficulty with movement of the wrist and arms. This new skill is very exciting for all because it means we can all enjoy our meal a little better too! Okay, now chicken noodle soup is a different story:)

Boys will be boys and Crew hasn't quite grasped an appropriate means of communication for "ALL DONE". Anybody that knows Crew can picture him throwing everything from balls to food. I finally made a stop at "Babies R Us" and picked up some colorful bowls with suction cups. It's great! They stick to his tray and minimizes the time I spend on the floor wiping up. Yeah!

IEP again!

Living in a rural area has its advantages and disadvantages. I love the feeling of open spaces, a close-knit community, small-town celebrations, etc. However, when it comes to getting some of the services such as therapy.... its a challenge.

The school district here has somehow squirmed their way out of providing PT services for those kiddos in need. As far as I know, its been 3 years since they've either staffed or contracted with a Physical Therapist. The Special Education Rules state that if a child qualifies for "related services" the school is required to provide those services.

Last month at the IEP, we were not willing to agree with the district to use what they call "Motor Services" in place of PT services. The school district agreed to obtain an "independent evaluation" and meet again the following month.

Meanwhile, I have been doing my homework in preparing myself to ADVOCATE for my child. With an excellent support system, my sister and our Early Intervention team, I felt prepared for todays shootout.

After a grueling 2.5 hour meeting, we were successful in obtaining weekly PT and weekly OT services for Crew during his Pre-school hours. This is a MAJOR breakthrough! I wouldn't say that I am thrilled with the services but I feel content which is okay!

Advocating for Crew is emotionally exhausting. I don't like confrontation and I don't like it that I have to stand and "fight" to get him the services that he is entitled to. It shouldn't have to be so painful and negative. I don't like it.... but I'LL DO IT!