Wednesday, March 31, 2010

Piper's Story

Piper Kate Younglove was born February 7th, 2009 at just 30 weeks along. Our little "chubster" was the middle of a set of triplets (Andi Elizabeth, Bella Ryan) and weighed in at a whopping 3lbs 4oz. She and her sisters came home after spending about 7 uneventful weeks in the NICU in Plano, TX. At first things seemed normal, well as normal as they can with triplet girls, but after about 3-4 months, her mother and I started noticing that things were not quite right.

She started to not take her pacifier any more and was not developing along with her sisters. We took her to several doctor's who all told us to wait it out a little more, as premies tend to lag behind in their development. But we just felt that something was not right, and at our 9 month check-up our Pediatrician confirmed that she agreed with us and thought that Piper had Cerebral Palsy (CP). Needless to say we were heart broken, but unfortunately this was not the worst of the lot for Piper.

So we got her into therapy, and more therapy, and we started seeing neurologists, and gastro-interologists (for her severe reflux), and speech therapists to perform swallowing studies, and all things in between. She had blood tests, urine tests, X-Rays and MRI's. At first the therapy appeared to be working. We started to see improvement, but that was short lived. Then the real downhill slide began.

In February 2010. we took all three girls to their 12 month check-in with the developmental pediatrician. After going through the basics with Andi and Bella, who were progressing fine, we starting talking about Piper. We mentioned that we had just had an MRI and were awaiting the results, expecting a CP confirmation. The developmental pediatrician made a few calls and was able to get a hold of the MRI results. Unfortunately, after she tolds us what the MRI showed, we began to wish she only had CP.

Piper was diagnosed with Leigh's syndrome. It is a mitochondrial disease that affects the bodies ability to provide energy to its cells. Basically your body takes the food it eats and converts it into energy to fuel the cells in your body, like brain cells and muscle cells. In people with Leigh's syndrome, the mitochondria do not work properly and thus do not create the energy needed for your body to function properly. This leads to a loss of motor control, irritability, continuous crying, lack of ability to eat, etc. Over time, cells that use lots of energy, like brain cells, can't continue to function on the limited amount of energy that they receive, and as a result they start to die. This leads to a continued degeneration in function and ability and eventually death. There is no cure for Leigh's syndrome and most infants typically die within the first two years.

Devastated does not begin to describe it and I won't go into details (see my rant page for that). Let's just say that it literally sucks the life out of you. Since then we have been sent to the ER three times, Piper has had more blood taken, a spinal tap performed, spent 2-3 nights in the hospital, had more X-rays taken, several IV's started, a camera put down her throat, a nasal feeding tube inserted, which irritated her so much that she subsequently vomited out resulting in paramedics coming to our house, and also started having seizures (minor miracle here as there is medication to control this). So that's where we stand as I write this, April 1st, 2010. If only this were an April Fools joke...

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