Family Prayer & Praise Update - "Lemley’s Special Toddler"

Pam's Page 5 - "Family Life"
One of my goals to blogging is to feature special families and add them to our “Family Prayer & Praise Update” list. I intend for you to hear from these families, periodically. Today I want to feature “Lemley’s Special Toddler”.

James was born on June 27, 2006 into a family with an older brother, Jonathan, and sister, Jenna. His parents are our dear friends, Jason & Cindy Lemley.


Cindy shares her journey with their son...........
"James seemed to be a very quiet, reserved infant.


FOUR MONTHS OLD-
Between James' 2mo and 4mo check ups, there were several visits to the doctors office for different things. The final visit was due to James not wanting to eat because of being congested. At that visit, the doctor began to tell me several issues that lead her to request a blood test be done for Down Syndrome. It took a lifetime to get the results!!!! Okay it seemed like a lifetime.

FIVE MONTHS OLD-It was a month later - just before Thanksgiving. The result came back Mosaic Down Syndrome!

DAILY CONCERN-Immune systems are not as strong in kids with down syndrome, so flu shots are a must for the whole family. James has to be watched closely if another family member is sick. Even with flu shots, he ended up with pneumonia.

NINE MONTHS OLD-At 9 mo, James had an echo and ekg done. This test concluded that he has a 8mm hole between the upper chambers of his heart, causing extra fluid to his lungs. The size was a bit alarming and thought that open heart surgery would have to be done right away. After conferring with a couple of surgeons, James' cardiologist decided to wait and retest after 3 mo. At the 3mo check, the size was the same but the pressures were lower. James was growing and gaining weight just fine so a recheck was scheduled for 6mo later. At that checkup, great news!! Praise God, the hole was smaller!!! James is still growing and gaining weight just fine. A recheck will be done every 6mo. If the hole keeps getting smaller, no surgery will have to be done. At age 4 or so, if the hole remains the same size, surgery may need to be done but he will be big enough to have a catheter versus open heart surgery.
ELEVEN MONTHS OLD-Ear infections are another issue that kids with down syndrome tend to have.
James had chronic ear infections for at least 6 months straight. Finally at 11mo of age, tubes were put in. His ear canals were so tiny at the time, the doctor thought the tubes would only be in place for 1- 1 1/2 years.
Tubes are an awesome technology!!!! Down syndrome kids can experience tubes in their ears even into adulthood. So when this set falls out or stops working, another set may need to be put in. James sees an ENT about every 6mo and more if necessary.

BUILDING MUSCLES-Muscle tone, especially in the core part of the body, is a common issue.
James has this issue as well. His physical therapist has worked with him since he was 5mo old. Even with lots of work, James never crawled "normal" - hands and knees. Just this week, a visit was made to a therapy center for children in Cedar Rapids. The therapist we saw there felt he was doing very well with his motor skills and that it probably wouldn't take long for him to be walking with his legs closer together. She thought he would get there on his own but a little help with treadmill training would speed things up. James was placed into a harness to support all of his weight. The therapist started the treadmill and helped James walk by moving his legs in a normal walking pattern. He was on there for about 10 mins. We will be going once a week for this training. In between this training, James will need to wear a pair of lycra shorts that are sewn up the middle a couple hours a day. This will help him bring his legs closer together. The therapist also suggested we might use tape to help build up his muscles in his trunk which will in turn help his balance to be able to bring his legs closer together.

SPEECH THERAPY-
Speech therapy just started 3 months ago. James can say Mom and Dad. We have been trying to teach him sign language to help him communicate. He is up to 6-7 signs now. His cognitive speech is pretty good where his usage is quite a bit lower.

HIS SCHEDULE-This is where James is at today. He currently has therapy from Grantwood AEA 2-3 times a month - physical, teacher, and speech. Treadmill training once a week. Then periodic visits to various doctors.

HIS VICTORY-
James is a very happy and fun loving toddler. He is curious about everything!!! Some of his favorite things to do is play with anything with wheels, balls, stacking cups, putting things into any nook and cranny, music, and of course getting into what brother and sister have.

ORGANIZATION TO SUPPORT-
Now we belong to an awesome organization that helps educate families with a child with down syndrome - resources available, support group, monthly meetings, etc. To make a donation to this organization click here and visit their site – Hawkeye Area Down Syndrome Association


Cindy’s Prayer-
"I trust you Lord. I trust your plan. I trust your goodness. I trust what you can see and I can't. I trust you with little James, his hopes, his dreams, and his disappointments. I trust you with it all Lord."