Molly's path has had a lot of ups and down. However, she's been struggling for a while now, seeming to be fatigued and lethargic a lot of the time. She appears tired, uninterested, and sick without an acute illness. Back in the middle of June, Molly seemed to be ill. She initially complained of acute belly pain, for which we took her to her pediatrician. Her rapid strep test was positive and we began treating her with antibiotics. She appeared to be getting worse. She was very tired, she started complaining of a sore throat and she just didn't feel good. We changed antibiotics and then we did some lab work. This began on a Friday night and continued until a Wednesday when we ran some labs and found out she didn't actually have strep at all.
It was then the 4th of July and we went to my parent's house for a day of swimming and relaxing. It was just the five of us and the two of them. A quiet day by all accounts. Molly seemed to be having a great time. Then, out of nowhere, she just started sobbing, while in the pool. She was making no sense. We pulled her out of the pool and held her on our laps until the episode passed, which it did. She was very zoned out by this time and shakily made it down the stairs. She then attempted to take a step up to go change and fell twice in the attempt. Her body seemed to just crumple under her. The next day, I emailed her Boston team, but given the holiday weekend, the email went to the on-call provider, who as appropriately concerned and sent us to the local Emergency Room.
We had her evaluated and she had multiple elongated absence type seizures while we were there. It also took them five sticks to get an IV in her because she was so cold - an unusual symptom for her. They decided she had a seizure and sent us home. Apparently there was a mis-communication somewhere along the way and Molly should have been admitted for monitoring.
So, we called, we worked the schedule, we took Zoey in for her Ear Tube and Adenoid surgery and then had Molly admitted that following Friday, July 12th for continuous EEG monitoring. She had some episodes, but apparently they didn't register as seizures. They told us she had diffuse slowing - we're still working on getting the EEG read a 2nd time. Regardless, Molly seemed tired but very content in the hospital.
We came home from the hospital and Molly just seemed to go downhill. She appeared increasingly fatigued and I would even qualify it as lethargic. She doesn't want to go outside, she doesn't want to swim, she just wants to lie on the couch and color. She cries for no reason, she gets really scared for no reason, she's not herself and it's breaking our hearts.
She had some more concerning episodes. One where she just suddenly fell out of a chair, whacking her elbow and sending us back to the Emergency Room, where we were again told she needs a specialist - they just don't specify which one! Then there was some drooling with confused talking and slurred speech with unresponsive pupils. There's a lot of little bits and pieces.
So, we started the route of doctor's appointments.
The Developmental Pediatrician down here thinks she's depressed and her anxiety needs to be controlled. They have not laid eyes on her. They say weekly talk therapy sessions.
The Developmental Behavioralist in Boston, who also didn't see her, thinks she needs intensive autism specific therapy, like really seriously intensive.
The Yale neuro thinks there is definitely some over-arching genetic disorder that we still haven't put together yet.
We saw Our top specialist today, epilepsy at Boston. She feels that Molly is actually neurologically the same and somewhat stable. She is concerned and acknowledges that she seems to be in a slump. The theory is that a little virus back in June, totally through Molly completely out of whack and that the autism symptoms are what we're really seeing. She feels that we need to address what could be behavioral to truly understand what is behavioral and what is something more. She did note a change in Molly's gate and a new posturing of her left hand, but wants to see if this disappears when she comes back to baseline.
We are seeing the sleep specialist next week. We are trying to get in with our pediatrician to help us put this big picture together and help us make sure we aren't missing something. We are working on an endocrinologist to see if any of it is hormonal.
My poor Molly. I feel for her. She has the biggest imagination and talks about all these things she wants to do, but she then doesn't have the energy to do anything. Her lung function is down, per the pulmonologist. She has some sort of confusing central sleep apnea. Her EEG was abnormal, her blood work appears dehydrated - but she's clearly not. She's fatigued, she complains of various ailments. And here I sit as Mom, unsure if I should hug her and comfort her as she cries her eyes out - or if I'm to treat it as a behavior and ignore it.
We worked to get ABA for Molly. This is in home behavioral therapy. Our insurance only covers limited providers, so we went with who we had to. The organization we are working with cannot find a provider in our area and so they want to train us to do it ourselves - but this is so emotional and too hard to decipher what we should do. SO - we'll fight that fight. We'll fight the fight of mounting medical bills, because every appointment and every medication and every therapy comes with a co-pay.
So, you can see why having all Molly's doctors in one room would make life so much easier. We are blessed to have some pretty incredible doctors on her team, but when you parent a special needs child, you must constantly push. You must think outside the box, you can never settle.
I try to remain positive with Molly. She wakes up every morning. She smiles at me most mornings, she hugs me and she can say "I love you Mommy". It's hard to separate how worried you are with what is really happening. And I am forced to take a step back and reflect on what I'm truly worried about. Yes, I'm worried we could lose her in her sleep; she certainly has enough issues and that worry has been addressed. Yes, I'm worried that I won't be able to protect her from hurt, because Molly is a sweetie who loves with her whole heart and doesn't understand a world that is unkind. I'm truly not worried what people think of her or of us, I know who we are - a family that works together to give our members every advantage possible. I think I'm truly worried that we're missing something, that something else is wrong. I think that's because Molly doesn't fit into any one category. She's a little bit of this and little bit of that with a dash of something else and a lot of curve-balls thrown in. We don't have a specific diagnosis and so we have no prognosis or course of treatment. We blindly pave the road ahead of us as we try to make the best decisions we are able to .
We'll keep walking the road, and I'll try to keep this better updated. Chris and I so appreciate all the thoughts and prayers we've received. We are surrounded by a lot of love, and we can feel it. Thank you for carrying our special girl in your heart. She's truly a blessing.
