The tests ... and results

The first testing we had done was her bloodwork. On Monday, March 17th, Conner, Jordan and I packed up and headed downtown to Spectrum Hospital where we went to the lab to have bloodwork done. Jordan sat on my lap and I held her tight as they poked each of her arms working hard to find a good vein. One lab tech held her arm and the other worked on collecting the blood. At one point, they were having a hard time finding the vein and they switched. Jordan was soooo good through this process. She cried a little, but was amazingly calm through most of it.

We received the results later in the week. Everything came back normal. Basically, they ruled out a metabolic disorder or complications with her organ functions. That was reassuring!!

On Tuesday, March 25th, we had a visit from 2 therapists from Ken-O-Sha/Early On. Betsy Emelander (physical) and Kristin Willey (occupational) came to our home and we spent just over an hour in Jordan's bedroom playing on the floor. Cheryl Schut was a wonderful friend and came over to play with Conner in the basement and then put him down for his nap. The therapists left that day basically informing me that Jordan qualified for their services and they would be back in a week with a full developmental assesment report.

On Tuesday, April 1st, Betsy Emelander came back to discuss the results with us. Derrick took the day off to be there so that we both had a full understanding of what they determined was going on with her and the course of treatment. The report was 4 pages typed!! I was amazed at the detail that both of the ladies were able to get out of that 1 hour of time with Jordan! Here is a brief summary of that report:

Hearing - inconsistent response - more on left - especially when engaged in something
Vision - not formally evaluated - tracked well / converged spontaneously
Gross Motor - on back - kicked legs simultaneously/not reciprocally; clapped feet together; turns head to either side - reaches for item with same arm; doesn't cross arm or leg over in attempt to roll; on tummy - briefly lifts head and then rests on floor turned toward left - did not turn to right but would allow to be passively turned - left it briefly and then turned back to left. Unable to lift on forearms or extented arms, roll from tummy, or pull forward on tummy. Started sitting at 9 months - when sitting maintains balance and reaches for objects to front/sides. Unable to get down from sitting or to assume position. When placed in standing - initially extended and put weight on feet, but locked knees. Good muscle bulk but evidence of joint laxity - especially hands/knees. Gross motor skills scattered up to approx. 6 months with prone skills at approx. 1 month.
Fine Motor/Visual Perceptual - reaches for toys - more freely with left arm and more refined with right hand. inferior pincer grasp w/ right and and isolates right index finger to poke something. When sitting - sometimes retracts shoulders and extends arms locking elbows. Able to lift peg out of pegboard w/ left hand but not right. When encouraged to clap/bang - moved right hand to left but never clapped/banged. Easier to place left thumb around object. Fingers hyperextend especially at MCP joints. Functional fine motor skills up to 5 months with scattered skills in 6-8 months.
Thinking, Learning, and Playing - with bell or rattle - shakes but doesn't bang on surface. finds partially hidden toy, but not completely hidden. uncovers face to play peek-a-boo and brings mirror to face. Looks to floor when something falls and pulls string to get toy. Not observed/reported to do any motor imitation. Cognitive skills approx. 5 months.
Speech/Language
Expressive Language - Sounds include: "ah", "b", "rah", "w" and sounds in back of throat. Doesn't bring lips together for "m" or make "d" sounds. Various voice inflections - crying is either whining or forceful. Vocalizes to others, engages in vocal play along and with others. Expressive language in 3-6 month range.
Receptive Language - responses were inconsistent. Cues in visually and is is very social and interactive. Doesn't always respond to sound if playing with toy. Receptive language skills emerging in 3-6 month range.
Social/Emotional - happy throughout eval. and never fussed. Skills scattered in 4-6 month range.
Relating to People - very social - initiates social contact by smiling/vocalizing. No signs of stranger anziety. Good eye contact, laughs w/ frolic play.
Play Skills/Attention - interest in other's play - reaches to grap toy. Explores by bringing to mouth (not in) and shaking. Does not bang toys/motor imitation.
Self-Awareness/Emotional Expression - gererally happy - seldom fusses. Brings mirror close to face. Sometimes quiets to parents' voices but wants to be held for comfort.
Self-Help/Self-Care
Feeding - breastfed and given stage 1 foods. If mom not avail. given bottle - but only takes small amount. Never cries to signal hunger - kept on regular feeding schedule. Coordinates suck/swallow/breathe pattern - doesn't gulp - needs encouragement to stay latched on.
Doesn't like yellow veggies/some fruits/hasn't had meats yet. Soft bread/veggie puff - lets sit on tongue and sometime gags on it. Uses tongue thrust if doesn't like food.
Sleeping - napped only 15-20 minutes until 5 months. Now about 1 hr in am and 1 hour in pm. Sleeps through night.
Summary/Recommendations - significantly behind in prone skills and mobility and some difficulties/delays in overall development. Qualifies for special education services as Early Childhood Developmentally Delayed (ECDD). Jordan will be receiving therapy with Betsy 1 time per week starting on April 25th.

Finally, on Wednesday, April 2nd, Jordan was evaluated at Mary Free Bed for her Oral Motor Skills. They found she had a tongue guard meaning she blocks the back of her mouth with her tongue. This is often found in babies with reflux. She also seemed to dislike having things put in her mouth and would guard in those situations as well. She was very glad we started her on Zantac after her 9 month check up and thinks that within a month or 2 she should be no longer reacting to the severe reflux and the problems it caused. She recommended putting lots of things in her mouth for 3-5 seconds at a time and getting her used to it. She recommended therapy 2 times per week for 2 months. We are waiting for insurance to approve the therapy before she is scheduled.