Daily/Weekly Thoughts

A Walk In The Park

 Emmett got a pass! Emmett got a pass! After several days in a hospital, Emmett - with a pass in hand - and parents plus Roger and Rhonda (his Willms' grandparents) and his Uncle Ben, left Emmett's Place and went outside where they had a walk in the park on Saturday. Sunday, Pam and I went for a walk with Emmett and his parents around the hospital neighbourhood. Emmett, bundled up with a wool touque, sweatshirt, red pants, and with a warm blanket close by, was able to be disconnected from the monitors and go out exploring - with the mandate that he was back for his scheduled feeding times. No issue with that - Alisha made sure he was back on time. She follows the rules (didn't get that from me!).

The doctors have told Alisha and Josh that Emmett will rebound after the Gastric Tube (G Tube for short) is surgically placed into his stomach. That will be good because since his episode last Wednesday when he stopped breathing, Emmett has been hospitalized and his strength has been drained. Apart from pulling out his feeding tube the other day, his arm movements have reduced. His smiles have been given out more selectively. He has an infection - not sure what - and has been using all of his strength to fight that. It is possible that the Nasal-Gastric tube (or N-G tube) is causing some of this stress? Or maybe it's something that he got along the way? Whatever it is, this is a concern because they may postpone the surgery to insert the G Tube if the medical team believes that it will be too challenging for Emmett to face surgery. Obviously, after waiting in the hospital all weekend Alisha and Josh want the G-Tube placement to happen. This operation is a normal step for a baby with SMA Type 1. It also means a change in the bonding time between mom and son.

Huge thanks to the Meal Train at Alisha and Josh's Church. Curried Yam and Apple soup. Raviolli. Chicken Stir Fry. Mexican Tamales. Huge thanks to the folks who have made donations to Families of SMA Canada Society (curesma.org) and to the donations that have been made specifically for supporting Emmett. God Bless you. Undoubtedly the care and concern of those who know Alisha and Josh and Emmett is like a giant hug! Those of you making donations and you don't even know the family, wow! Thank you. We are, simply, speechless. Alisha will tell you that doesn't happen to me very often! 

Our hearts were filled to overflowing when we got an email from Angel, who has a foundation called "Hugginz by Angel". This young lady wants to sew a blanket of love for Emmett. Her mission, fulfilled through her foundation, is to wrap critically ill kids and special needs kids in warm hugs to comfort them. You can find Hugginz by Angel on FaceBook. Thank you, Angel. You and your family are a gift from God.

A week makes a huge difference in a little one's life, and we're looking forward to a week from now when we can share the positive difference in Emmett after his surgery. Right now we are waiting, just as Dr. Suess describes in his book "Oh the Places You'll Go". Waiting is challenging. So if you have a moment to relieve some of the tedium that Alisha and Josh experience from time to time, share a comment here on the blog in the comment's section. Or send them a note on facebook or an email. Any posts or emails that come to me, I forward them on to Alisha and Josh. And Emmett. We all love to read to Emmett. Or to just smile and stare into his eyes, like Emmett's uncle Ben is doing.

Spinal Muscular Atrophy, Type 1 is not a walk in the park. It is, quite honestly, Hell. It is even worse than your worst nightmare, but, in the midst of all of that turmoil and pain, there is peace that defies description. There is a firm backbone and resolution to fight and do whatever is possible to improve Emmett's life. There are bright moments. Like Emmett's smile. Like waking up to a full diaper - which means he's beating the infection. Like a walk in the park! There will be challenging moments, but Alisha and Josh are working so hard to ensure that there are many bright moments too. Emmett is feeling much better today. That is a blessing. Life is a walk in the park when our little boy is happy and feeling good!

Comments

  Validation Code
Guest Comment 4 years ago
Site Visitor
+1
Poor Comment Good Comment
We are so touched by Emmett. He is so precious. God bless you all. Be assured of our love and continued prayers for all of you but especially Emmett. Uncle Greg and Aunt Mary
Guest Comment 4 years ago
Site Visitor
+3
Poor Comment Good Comment
Josh and Alisha....you are absolutely amazing parents. Your strength and courage to smile amidst this heartache is a testament to your love and commitment to Emmett and to our heavenly Father. Emmett is blessed to have you as his parents. Continue to give all you have to that precious baby. Thank you for sharing this journey with us. We are praying for you all daily. With all our love... The Gooch FamilyPS... as a pediatric OT... I am very impressed with the ingenuity and creativity that went into the Jolly Jumper. The videos just melted my heart. Well done!!!!