Today, Asher called Eliora cute… and he’s quite right.
This shot of the the little lady was taken about a month ago, right before things changed… really changed.
Anyone who knows me in person, through Facebook, on Instagram, or via this blog has most likely heard Eliora’s story. If not, then you probably don’t get online much. Maybe I share too much, talk about my kids, about her conditions too much. But, on the flip side, I’d like to think that I’m helping everyone expand their horizons a bit, learn about and experience the life of a special needs baby and her family. I hope everyone is learning a little bit about spina bifida, hydrocephalus, and all the little medical details. I truly hope that our story helps those who are not directly impacted by spina bifida, or any other condition, understand what we go through, relate a little better, and feel less awkward when you or your family is around a non-verbal child, a child in a wheel chair, or a child who perhaps seems a bit different than the rest.
Today’s post is serving as an overview and an update – an overview for those who are just tuning in and an update for everyone who is following along. For a more in depth story – click here.
Just before Asher’s first birthday, in 2011, we discovered that the sweet little girl we were expecting had spina bifida. My husband BJ can tell you what an emotional experience it was, how stunned we were just to hear that the baby we had been wishing would just be “healthy” was going to be… something else. Especially since we had no history of a condition like this in either family. We didn’t know what spina bifida was, we didn’t know what this meant for our family. What we did know is that it didn’t matter, that we loved that little girl, and that our faith in God was strong. No matter what, we knew everything was going to be fine.
What is spina bifida? In a nutshell, spina bifida is a neural tube defect. Essentially, within the first month of gestation, our spinal cords are formed. The cord of those with SB did not finish forming and left a hole somewhere along the cord. Eliora’s was in her lumbar region, right above her bottom. This hole can be repaired in utero or within a day or two of being born.
Many other conditions and diagnoses fall under the SB umbrella – like hydrocephalus, chiari malformation, neurogenic bladder, etc. Eliora has many of these.
Please know that my goal is not to portray Eliora as a victim by explaining everything that is going on with her. She is not a victim, her quality of life is in NO WAY any less than anyone else’s, there’s no need to feel sorry for her or for us. But feel free to feel sad, it’s okay for your heart to hurt as mine does when I see all the obstacles my daughter has before her. However, her bright smile, her happy spirit, and her loving demeanor are a constant reminder that she doesn’t care – she’s a happy, well-loved baby girl with dreams, not obstacles, in front of her.
I am merely explaining the details, to explain what is currently going on with our sweet girl.
Currently, Eliora has to be catheterized every 3-4 hours because she cannot urinate on her own. She takes two medications to help with this, to help prevent infection, and to keep her urine from refluxing back into her kidneys. She also has very low muscle tone. At almost 15 months, she is still learning to sit, cannot roll, and has what we call “spaghetti legs”. But she is quite the snuggle-bug and doesn’t run away from kisses – and that is a definite win. This low muscle tone also affects her ability to pass bowel movements – something that we are currently addressing through diet. She attends two sessions of occupational therapy and two sessions of physical therapy per week. Shout out to In Harmony Pediatric Therapy – they’re spectacular.
She’s had multiple surgeries, but they have all been helpful and successful. Her hydrocephalus is under control, her strabismus is repaired (eye-crossing), her Dandy-Walker cyst is taken care of, and her back is looking good. We are very blessed to have had several uneventful months free of surgeries and complications, which can’t always be said of many people with spina bifida.
However, recently things have taken quite a turn. I always remind myself that things could be worse, but it doesn’t change the fact that things are different and we’re fighting for answers.
(This post has sprouted more words than I had originally intended, my apologies. I guess I just needed to write about this.)
A few months ago, after the start of the new year, we noticed that Eliora had some motor regression. There are things that she could do, like lift her head up while on her tummy, purposefully move her left side, bring her hand to her mouth, that she no longer could do on her own. She also started having some strange muscle tightness, something that comes and goes. We addressed this through therapy, focusing on those skills and aggressively working on them during her sessions. However, her therapists grew concerned, as did I, so we contacted Eliora’s neurosurgeon.
This is a skill she can no longer do.
We wanted to make sure everything was okay in terms of her shunt, that no cysts had appeared on her spinal cord, that there was no tethering of her cord that could be causing these strange motor regressions.
A little over a month ago, she had a head scan done that confirmed everything was well with her shunt. Her neurosurgeon ordered a spinal MRI, but insurance was taking forever sending their approval. While waiting for approval, Eliora started losing weight. A lot of weight. She is a naturally small child, only weighing in at almost 17lbs at 14 months old, but she had dropped to 15 lbs in a short period of time.
The weight loss could not be explained since her eating habits had not changed (she was a great eater), so we scheduled a visit with her pediatrician and one with a GI doctor (who could only fit us in a few weeks out). Prior to seeing her pediatrician, and while still awaiting approval for the MRI, Eliora began very sporadic vomiting. By sporadic, I mean that she’d vomit one day, then not vomit again for three days only to vomit for two days in a row – very inconsistent. Suddenly her appetite started diminishing. She would turn her head to familiar foods, foods that we considered her favorites.
Then she decided to stop eating and drinking all together.
We saw her pediatrician on a Wednesday and she seemed very concerned about her weight loss and overall changes. Eliora was looking terrible – skin and bones, fragile. The pediatrician told us to wait to see GI and update the neurosurgeon.
The following day, Eliora missed her therapy sessions because she could not stop leaking poop… for almost an hour. The vomiting got worse and she continued to refuse food and drink. Around this time, her urine decreased in output and became very cloudy – signs of a UTI.
By Saturday, we couldn’t wait any longer, we couldn’t sit and watch Eliora get worse, so we took her to the Emergency Department at Children’s Healthcare of Atlanta. During this visit, it was determined that she indeed had a urinary tract infection and they recommended to wait to see GI at her upcoming appointment to treat what they felt was a “stomach bug” (in my opinion, that’s code for “I have no idea what is going on and none of the specialists are available”). They had given her some fluids intravenously while we were there and told us to bring her back if symptoms persisted for a few days.
During the next couple of days, she grazed on crackers, continued vomiting and dropping weight.
Monday rolls around, Asher has a terrible fall and we’re back at the CHOA ED. Fortunately, Asher was alright, just badly bruised and swollen. While getting Asher taken care of, the neurosurgeon’s nurse practitioner stops by the room to take a look at Eliora. She chats with the neurosurgeon and they decide to admit Eliora right at the moment to address some of the symptoms that could be linked to something neurological.
We were at the hospital for nearly two weeks. We saw neurosurgery, GI, urology, and neurology – all to no avail. The UTI we thought she had turned out to be a false positive, but she then developed one while admitted. All the doctors were pointing fingers at each other, then started pointing the finger at the UTI claiming that perhaps that’s what it was all along. She had the long-awaited MRI done, various GI exams, blood tests, urine tests, stool samples, and ultrasounds among other things.
Because Eliora still would not eat or drink, they put her on an NG feeding tube – a tube that enters through her nose and is routed to her stomach. She currently grazes on crackers or random pieces of food, but does not eat well and has not had anything to drink for almost a month.
We now feed her formula through the tube and are working on getting her to eat more. She was discharged last week, but started up again with some vomiting and diarrhea this week. We have spoken to doctors and are still working hard to find answers.
A little over a month ago our baby girl was just fine. Now she still has motor regression, her muscle tone has decreased, and she relies on a feeding tube.
Could this all be related to spina bifida? We don’t know. It seems completely unrelated, but, again, we have no clue. But we believe in the power of prayer and we will continue to work hard, to advocate for our daughter, to find a cause and a solution.
Because of these recent happenings, we are adding speech therapy, we have several doctor’s appointments coming up, and have various other added expenses related to her feeding tube and motor development. We are extremely thankful that so many of you reached out to us, asking if there was a way you could help our family. We are horrible at asking for and accepting help, especially because we wish we could give something in return. Thanks to my husband BJ, we can make giving fun for everyone through the Raising for Rora fundraising raffle. Thanks to all those who believe in the cause and have donated amazing prizes. I’ll add links to all those who donated soon.
These are hard times for us, but Eliora is still a ray of sunshine through it all and we are truly blessed.