Tuesday, March 18, 2014

Maddie's Medical Timeline: The Unofficial Diagnosis

Monday, July 15 @ 1:49 p.m.--Maddie (Baby C) made her entrance into the world via C-section.  The nurse showed us our girl before whisking her away to be evaluated by the NICU team. Her Apgar scores were solid (8 and 8).  Suddenly, at 6 minutes she went into respiratory distress and required positive pressure ventilation using Neopuff resuscitation.  The notes do not indicate how long she was in distress, though she was reunited with us in the recovery room by 2:15 and remained with Jesse and I until she was discharged.

Wednesday, July 17-While Maddie passed the routine Congenital Heart Disease Screen, a murmur was heard.  An echocardiogram was ordered and a PDA was detected.

Thursday, July 18-Maddie was discharged from the hospital.  Though she was eating well, her reflux caused her to loose over 10% of her body weight.  She dropped below five pounds.

Friday, July 19-Maddie saw the pediatrician and was prescribed Zantac.

Thursday, August 1-At the two week well check, Maddie weighed 5 lb, 8 oz (1 oz shy of her birth weight).  Her Zantac dosage was doubled and we were advised to keep her upright for at least 30 minutes after each feeding.

Wednesday, September 18-We took the babies to their two-month well check, only to find out that our pediatrician would not accept our insurance cards.  We were denied being seen. 

Late September-We finally got a prescription for Prevacid since Maddie's reflux was getting worse.  I assumed her intolerance to tummy time was a result of the reflux.

Saturday, October 5--A casual play date resulted in a conversation with a mom who happened to be an occupational therapist.  She suggested Maddie might have torticollis since Maddie's neck was extremely tight.

-Madeline received chiropractic care throughout this time period.  After dozens of adjustments, she regained neck mobility and loosened up a bit. 
-After multiple phone calls and visits, we still did not have correct insurance cards.
-Our pediatrician left the practice and we could no longer get a refill on Prevacid.  Maddie began to loose weight.  She struggled severely with tummy time, which I continued to attribute to her severe reflux.
-This was the first time I noticed a discrepancy in motor skills between Maddie and her siblings.

Friday, December 6-We finally found a pediatrician in another county that accepted new Medicaid patients.  The trio had a thorough appointment, were examined, and received vaccinations.  At almost 5 months old, Maddie weighed 9 lbs even.  Our new pediatrician wrote a new prescription for Prevacid.  Weight gain and reflux was the primary concern, though it was noted that she was developmentally delayed.  We decided to wait until her six month check before referring for Early Intervention services.

December/January-Our happy girl had returned.  Reflux was finally under control with regular meds and introduction of solids.  Maddie began making a variety of new sounds and interacting with others.  Tummy time and rolling over continued to be a struggle.

Thursday, February 6-At the six (almost 7) month well check, Maddie weighed 11 pounds even.  While the doctor was content with her weight gain, there was still concern that Maddie kept her fists closed, and did not transfer objects or roll over.  She requested Early Intervention services through the county's Children's Developmental Services Agency.

Monday, February 10-Maddie saw the pediatric cardiologist to follow up on her heart murmur.  The PDA had closed, though she still has a PFO.

Wednesday, March 5- A team of 5 individuals (including social worker, case manager, OT, PT, and SLP) came to evaluate Maddie for Early Intervention services.  She automatically qualified because of IUGR (intrauterine growth restriction).  She was evaluated in the following developmental areas: cognitive, physical (fine and gross), communication, social-emotional, and adaptive.  She scored age-appropriate (7 months) in most areas.  However, her physical/gross motor skills were equivalent with those of a 2-3 month old. Her birth notes were reviewed and they emphasized her loss of oxygen at birth. Due to all these factors, they recommended that I seek a referral for a pediatric neurologist to rule out cerebral palsy.

[insert 2 days of sobbing here]

Friday, March 7-I took the triplets for their second round of the flu shot and requested a referral for a pediatric neurologist.  An appointment was made.

Monday, March 10-The EI team returned to create an IFSP (Individual Family Service Plan).  Because Maddie has over 30% delay in gross motor skills, she qualifies for weekly physical therapy at home. 

Tuesday, March 18-The appointment with the neurologist was informative and reassuring.  The doctor clearly stated that Maddie exhibited several "soft signs" that support cerebral palsy such as clenched fists, tight muscle tone in arms, and low muscle tone in trunk.  Her "prognosis" was that Maddie had "mild to moderate cerebral palsy". The only way to diagnose cerebral palsy is with an MRI, which would require an hour of anesthesia.  She told me that she would request an MRI only if I needed a label, but asked me to consider if it would change any course of action that we did.  We both agreed that the risks of anesthesia were unnecessary.  Our plan of treatment is to begin regular PT (beginning with once a week and increasing in frequency as needed) and continue to see the neurologist every 3 months until Maddie reaches the age of 2.  An MRI would be ordered if she shows a regression at any time or if we need a diagnosis for insurance/therapy purposes. 

The neurologist informed me that it is very possible that Maddie could be meeting developmental milestones and catch up to her peers by age 2.  It could be equally possible that she would require braces to assist her in walking.  Early intervention is critical and we are following all the right steps.   The good news is that her delays are only physical and it does not seem to impact speech, social, cognitive, hearing, feeding, etc.  Maddie can even grab objects (cheerios, pacifier, graham cracker) with her thumb and pointer finger, which is something James and Amelia haven't mastered yet.  The neurologist was also optimistic about her "prognosis" because she had great anticipatory reflexes. 

Now we wait.  We wait and see what impact physical therapy has.  We wait to see if additional time is in her favor.  We wait to see what God has in store for our beautiful girl!


  1. I like the timeline approach. Prayers Miss Maddie will rock therapy like nobody's business and this will just be a blip on her radar.