Jordan was born January 29, 1999 in Warren, MI weighing 7 pounds 9 ounces and 21 inches long. Healthy as can be. He went home with me 2 days later. He had minor surgery at 5 weeks for pyloric stenosis, however his first real problems were noticeable at 4 months old.
My grandma came over to take pictures and afterwards he fell asleep for 4 hours. I could not wake him so I rushed him to the ER, where they hooked him up to oxygen because his oxygen level were in the 70’s (normal range is 95%-100%). He was admitted to the PICU and during a blood draw, I witnessed him having a seizure.
When he was 22 months old he was admitted to the PICU again for Respiratory Syncytial Virus (RSV). At this time he had begun losing his ability to swallow so a G-Tube was placed in his stomach. I then requested a geneticist to do more testing. The physician speculated that Jordan had Menkes Syndrome, however he did not have the hair consistency like most Menkes children have. A muscle biopsy along with blood tests confirmed the diagnosis of Menkes. It was scary, like my whole world came crashing down on me.
After much research we decided to start Jordan on copper histidine injections. This has helped him tremendously with irritability and head control. We understand this will not cure him, but it is the little things that matter the most.
As he grows older he has become more vocal, happy and content. We attended the Menkes convention
that was held 5 years ago and he was the most vocal one there. He was looking around and it sounded like he was telling the doctors everything. It made me want to cry.
To care for him at home we have a wheelchair, hospital bed, suction machine, nebulizer, oxygen, apnea monitor, and a feeding machine. He attends school five days a week where the school bus will pick him up and drop him off. His teachers and therapists will tell you his personality shines through. He will close his eyes and pretend he is sleeping in hopes they will leave him alone. Then he will peek his eyes open to see if they are still there.
He has a 3 year old brother named Jaiden, who is his true angel for he has been his “helper” since he could walk. At the tender age of 3 he can already give explicit instructions to grandpa when babysitting Jordan. Jordan loves to be held and cuddled. He has a smile that will melt your heart, and a giggle like no other.
I have learned to treasure everyday Jordan is here with us. He has taught our family so much in life and I pray that he will be here with us for many years to come.
Mommy Jessica & Baby Brother Jaiden
Posted: July, 2007