Gabriel David Johnston

You can complain because roses have thorns or you can rejoice because thorns have roses.
~Ziggy

Gabriel David Johnston

Born: November 3, 2003, 9:11a.m.

Weight: 35# Length: 37 .25 inches

"I will praise You, for I am fearfully and wonderfully made." Psalm 139:14

Journal

Tuesday, November 18, 2008 7:20 AM CST

A season of birthdays...Peter turned 15, Julia is now 17, I'm a year wiser, and GABE TURNED 5!!!

Five years ago we tried not to think too far ahead, not knowing with each birthday if that would be his last. Of course, only God knows which birthday will be the last for any of us, but we believe there will most likely be many more birthdays for Gabe with his 4 chambered heart.

Potty training has been our big challenge. I took a class on how to potty train kids with special needs. I took pages and pages of notes, brought home charts, step by step instructions, followed every word of them and had 3 grueling weeks of frustration. Then Gabe's special ed teacher, (thank you Tara) told me what worked for her child who does not have DS, a few simple tips...and we are there! Well, half way at least. The solution was almost too simple. She told me to go to the dollar store, buy little gifts, wrap them in pretty paper, put them in a basket and tell him he gets to pick a present every time he goes. The timing for this was perfect as we were having 4 birthday parties in 3 weeks, so he was really into presents. I honestly did not think this would work, but it has!! So my notes and charts are trash and our little guy is catching on.

As for Gabe's hips, some nights are very bad, and then we have some weeks that are good. No rhyme or reason for this, nothing we can ever figure out or predict. Most doctors do not believe us. With each dislocation we move closer to permanent joint damage. Sometimes I want to hurry him to surgery, yet we seriously dread putting him through it all.

"Peace I leave with you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be troubled, neither let it be afraid." John 14:27

Hospital Information:

Patient Room: 8th floor West, Room 819

Children's Hospital Boston, Harvard Medical School
300 Longwood Ave.
Boston, MA 02115
617-355-3615

Links:

E-mail Author: thejohnstonvi@msn.com