Isaac and Hip Surgery

Thank you prayer warriors for covering Isaac and our family in prayer and belief for quick healing and a very successful surgery. Today it was posted on his MyChart exactly what he is having (I’ve been calling it hip construction): Acetabuloplasty, Capsulorrhaphy Hip, Lengthening Adductor Open, Lengthening Distal Hamstring, Varus Derotational Osteomy Hip, Spica Cast Application. 

There is a reason they will be in the OR for hours. 

This is a quality of life surgery. We believe in giving Isaac the best as long as we can. We want him to enjoy being up and about, not fade away in a hospital bed if we can help it. Currently he has major hip dysplasia which if left alone will deteriorate into arthritis, pain and inability to use his standing frame or sit in wheelchairs/other seats. It could become so bad that he would need a “salvage operation” in order to keep up with his bottom care. That isn’t what he wants. He has told us in his smiles in the breeze, and joy in listening to the children at the park, and perked up look at the beach that he wants to get out and about forever and always! He likes to travel. Like going to Orlando last month for our annual NTSAD conference and some Disney fun (which I will share pictures of here. I promise!). 

We check in at 5:30 am and surgery begins at 7:30 am. Please Thank God for the technology and intelligent medical team that will care for Isaac and fix his hips. Thank God for Isaac’s strong mind and brain that will remain free of seizure activity and clear the anesthesia in a brisk manner. Thank our Lord for strong lungs that will tolerate a number of hours under anesthesia and intubated unphased. Thank Jesus great pain control and quick and proper healing of Isaac’s hips and a reversal in his current scoliosis. All prayers, healing energy, good vibes and hugs and kisses much appreciated! 
   
    
  

 

Isaac and accessibility 

Happy February everyone! We hope your January has been a beautiful start to the new year! Isaac has had a great start to his year and we appreciate the love and prayers keeping him happy and healthy!

Isaac has the best new teacher in our new school district. It’s like she was handpicked for him! She’s in love with him already and we adore her! She advocates for him, is teaching him to color and does age appropriate projects with him! Yay! We also are pretty excited about some of the other ancilliary staff he gets to work with through the district. School continues to be in the home due to his immune compromised status and volume of seizure activity. 

His new bathroom is about done, just waiting for a couple of parts and the shine to take on his new countertop. It is so accessible! It’s beautiful! But it looks like it might not be his main bathroom yet as his Daddy may just move right into knocking out the revisions to his attached bedroom! Oy!

We are soooo blessed to have been nominated by his social worker at Children’s to receive a new ramp. We have been so blessed to call this home and neighborhood our own, but knew it came with compromises. Inside: hardwood floors great for his rolling equipment. Outside: whacky, unsafe steps to get in and out of the front door. It was on our list, but wasn’t going to be able to be very high due to knowledge base and material expense (Robbie had already fixed more problems than we expected to contend with). The East County Posse http://www.eastcountyposse.com received Isaac’s nomination, quickly came out to meet and interview him and deemed it very necessary that he have safe access in and out of the home! I can breathe much easier now getting him in and out and not worrying about missing a step and falling over with him in my arms! We can not thank the volunteers and organization enough!

   
    
    
    
 

Family Visit Recap in pictures 

We visited Grampy and Grammy in Tucson to celebrate their retirements mid-June. 

Hopefully that means lots more of this: 

  

Isaac appears to be blowing a kiss to Grammy here: 

  

After we got home and settled, GMa and GPa from Hawai’i were able to visit after having to delay last month due to both having bronchitis. We visited their favorite Old Town restaurant Coyote Cafe: 

   

 

GMa was just being funny here?: 

  

And a little later in the week GMa gave Isaac a trim while he stood in his stander. He did a great job of trying to hold his head up for her! 

   
 
We then celebrated Robbie’s (Isaac’s Daddy!) birthday with a toast (and our fun neighbors):

   
 

We had some cake too, but that missed picture time. 🙂

Two days later my Ate Mhener and Uncle Marc came to town from Tucson and while we missed a group photo, Isaac enjoyed our meal out together. Complete with Daddy trying to teach him ‘normal boy activities’ like sticking crayons in his nose. Haha

   
 

We are so blessed to have such a wonderful and loving family!