|Learning to Crawl with one fist.|
After finding out the somewhat devastating and life-changing news that our baby had a stroke, not being able to get her into treatment has felt like someone pouring salt on the wounds. The past few months have been series of phone calls, visits, paperwork, evaluations, and still, Coraline is not getting the treatment she needs. I am beyond frustrated, as you can imagine.
In case you haven't been following along, or you are new to the blog, here is the backstory (in 5 parts):
Suspecting there was a problem
Visiting the Neurologist
The day of the MRI
Results of the MRI: "The News"
Viewing the MRI
We first suspected that there was something wrong/off/different about Coraline around three months old. We noticed that she had a "crooked" smile, she was fisting her hands and she kept her arms and legs balled up into her body most of the time. We asked the pediatrician, he checked her hips and assured us that everything was perfectly normal and fine. Around four months, we noticed that her head was getting more misshapen and flat and asymmetrical, but again he assured us that she was fine/normal. By five months, we were so concerned that I went back to the pediatrician (between visits) and basically insisted on a referral to a specialist. The pedia wrote on the referral "parent has been counselled that this visit is unnecessary and that there is nothing wrong with the child" - which of course made me feel like an idiot and set it up for the specialist to view me as a joke.
At five months old we visited a neurosurgeon in reference to the shape of her head. He examined her and diagnosed her with torticollis - one side of her neck muscles being tighter/shorter than the other, which caused her head to tilt and her to favor one side (which in turn was making her skull asymmetrical). We would later figure out that although she does have torticollis, it's only part of the big picture - hemiparesis, in which ALL of the muscles on one side of her body are tighter and weaker. But the neurosurgeon missed it, and told us that her skull shape would correct itself in time and that she should receive physical therapy for the torticollis. Although he missed the stroke and hemiparesis, this was the first step in receiving our diagnosis. We said to him (in regards to correcting her head shape), that we wanted to make sure we didn't miss a window of opportunity to which he replied "you already have, she should have been in PT for the torticollis for months already." This was one of the first moments that we realized that our pediatricians were failing us.
Coraline was in physical therapy (PT) for about five or six weeks when she was 5-6 months old. Her insurance would approve 2 or 3 visits, then we'd have to fill out all the paperwork all over again and they'd approve 2 or 3 more. In all, I think she had 10 or 12 visits. They worked on her neck stretches and head mobility for the first half of the visits. But one week, we had a different therapist and she noticed an asymmetry in her hips. With this new info, back to the pediatrician I went (and I refused to see the one who wrote me the snarky referral ever again since there are three in the practice), and she suspected hip dysplasia and so we were sent immediately to X-ray. The X-ray showed an asymmetry in the femur bones, and we had to go visit a Pediatric Orthopedist to review the films, and he said that the bones probably weren't causing her issues, and her hip joint looked healthy. But from this point on the PT worked on her hips as well as her neck.
Also around this time, her hand dominance was really obvious and so was the right-hand fisting, and this was the first time the pediatrician suggested Cerebral Palsy (or a neurological cause) and so we got our referral to the Neurologist (this time without the snarky commentary.) The pediatrician also suggested that we try to get her into the Early Intervention program - which is a state-funded program that helps babies/children with disabilities receive treatment to try to "catch them up" to their peers by the time school starts and beyond. So just 4 days after the X-ray, on June 14 we went to visit a county building and meet with the Early Intervention coordinator in our area. I had to fill out a lot of paperwork and we chose a private agency who would do her evaluations.
Two weeks later, we had our first of two evaluations for Early Intervention (EI). A woman who was a physical therapist came out and took her basic medical history, asked me a lot of questions about her development and then did a physical examination of her. The woman was very matter of fact and gave me a really bad vibe, but I didn't think much of it. She was grading Coraline very "easy"; she would often say "close enough" when it came to her doing things. But there were some things that she was obviously unable to do. A week later, she called me with the results (early July) and told me that there were two tests performed. One test she ranked in the twentieth percentile and the other test she ranked with a 25% delay (that she was at the level of a 4.5 month old at 6.5 months). She explained to me how a baby needs a 33% delay in one area or a 25% delay in two areas to qualify for services (which I already knew). We had our second evaluation the following week.
The second woman who came to evaluate Coraline was a special education teacher. She was there to evaluate speech and fine motor skills. She wasn't quite sure how to score her fine motor skills because it was like scoring two different babies, left hand and right hand. She asked a lot of questions about her speech, like does she make vowel and consonant sounds, does she babble, does she respond when spoken to, does she know her name, does she laugh, etc. She called me the next day and said that she found a 25% delay in speech, and so combined with the 25% delay in gross motor skills, that she would qualify for services. Yay.
But then two days later, the first evaluator called me, and said "i'm calling to give your results." And I said "you already did." And she claimed she didn't - that the first phone call never happened! This time she said that Coraline was in the 57th percentile and has no delays, so she won't be qualifying for any services. I told her this was different than what she told me two weeks prior, that there was NO way that my baby scored above average - somewhere a mistake was made. She told me she never made the first phone call (it was definitely her) and that the results are final - we can try again in 6 months and see if she qualifies then. I told her - I only have ONE baby and I KNOW the results I was given, you don't forget those things. And she is probably dealing with hundreds of babies, and clearly she mixed up some paperwork. She refused to consider that possibility and said too bad. I asked her for copies of the evaluation and report (which I am entitled to) and now two months later, I still haven't received them. Around this time was also when her insurance stopped approving more therapy, so she was receiving no treatment.
I got on the phone right away to our county coordinator and explained what happened, and told him that I was appealing the results. No matter WHAT results she hands in, we'll never know which ones are real, or if she mixed Coraline up with another baby or if she changed the results or what. I told him I wanted new evalutations done. He said he could't reject her evaluation until he received it, and he hadn't yet. Two or three weeks went by, and she refused to send it to him! When she finally did (she sent the report only, not the actual evaluation results), he admitted to me that there was something fishy about them, and he granted my request for an appeal/redo right away. To this day, I keep requesting copies, but still they refuse to send them. He later told me that the agency is no longer affiliated with Early Intervention.
So now it's September... we started the process with EI back in June - and we are just now starting over. On August 12 we faxed over a new release of records form and chose a new agency to do the evaluations, five days later we heard from the county rep that he received them and that I would receive a call from the agency to set up the appointments. On Monday August 26, I was sick of waiting for the call, so i called the agency and politely left a message wondering when we would get the call to set up appointments. The next day, a woman from the agency called me back and said she never received our info from the state - and so I was basically waiting for a phone call that would never come. She told me she'd call the county guy and see what happened and get back to me in 48 hours to set up an appointment - and now another week has gone by and I still haven't heard from anyone. I have a LOT of phone calls to make tomorrow. At least this time around, we have actual diagnoses to give the evaluators and that may make the process go quicker and help "push her through"... but at this point I'm pretty furious that THREE MONTHS have gone by, and by no fault of our own, we still are not in the program and we need to start the process all over, and I STILL can't get the evaluation done!
Also, once we got the diagnoses of stroke/hemiparesis, we figured that we could get the health insurance to cover more PT visits, since her previous ones were coded for "torticollis" and this was an entire new reason. So we tried... and they denied. And I appealed it. And it was weeks of phone calls and paperwork before my PT office said to me "make an appointment, and let's just get her in here. We can worry about the insurance later." So from June 21-August 19 she was receiving no treatment at all because of insurance bureaucracy and when they finally approved PT, they approved only 12 more visits. After that, I'm not sure if we'll get any more. Also ridiculous, is that at least SIX times, I've had to fill out the SAME survey to qualify. It has questions like "does your injury affect your ability to climb stairs" and "does your injury prevent you from engaging in social activities" and "does your injury prevent you from working" etc. ALL of the questions on the form do not apply to an infant, yet they still keep making me fill it out! (I fill in that she cannot climb stairs and she cannot work, etc.) It's totally ridiculous.
And meanwhile this past week, we had to visit/call her pediatrician's office no less than 8 times to get the referrals done for her hematology and cardiology appointments. The pediatrician "didn't want to write them" because she felt like she could handle it in her office and/or we should go to specialists of HER choosing (rather than the ones that work in the building with our neurologist who I chose). She's being tested to make sure she doesn't have blood/heart disorders and to make sure she isn't at risk of more strokes - and her pediatrician was seriously questioning the importance of these appointments. The same office who MISSED her stroke even though we brought her symptoms to their attention for several months and were told that we were wrong and nothing was wrong with the baby.
It was a really long road to GET to her diagnosis... until we found the one doctor who would listen to me and believe me. And now it seems that getting her into treatment is going to be equally as difficult. Besides PT, she's going to need occupational therapy for her hand (the one that is always fisted and she doesn't use), speech therapy (since her stroke is in the speech center of the brain), swallow therapy, and countless other medical issues that may arise. As if all this wasn't daunting enough, just the paperwork is enough to drown in. Instead of focusing 100% of my energy on her rehabilitation, I find myself spending more time fighting with insurance companies, evaluators, and even her own doctors. This to me has been the worst part of the whole experience. It's bad enough that my baby is injured, but the fact that I have to kick and scream to get her treatment has been an added layer of torture.
So instead of swimming in the ocean this summer... I have spent my entire summer drowning in paperwork.
I need a vacation.