Chaos coordination
- Brittany Jackson
- Oct 3
- 3 min read
It's been a while since I logged onto blog. July was a hard month. We had just found out that I was expected again. We were cautiously optimistic due to our history of miscarriage and worrying about the health of the baby due to Elliot's diagnosis.
Unfortunately, the pregnancy ended up being ectopic. On the 20th I started feeling sick. Jack came home just in time before I started to pass out from intense pain. He rushed me to the ER and just as they were about to send me to another hospital I became too unstable to move and had an emergency exploratory laparotomy, excision of ruptured ectopic pregnancy, and right salpingectomy. I lost nearly half the blood in my body when my fallopian tube ruptured. Thankfully due to the swift actions of the doctors/surgeon, I'm still here today. Just like any of my recoveries, I found it tedious and boring. The worst part of recovery was getting less time with Elliot because it was hard to be alone with him because I wasn't allowed to lift him.
August brought my return to work and return to Elliot duties. Since the last post he has seen his ortho, his oncologist, and had his follow up MRI and appointment with his neurosurgeon. In addition, we still managed to do most of his therapies over the month.
Elliot's ortho let us know that his hip dysplasia is still stable and not an issue at this time. Unfortunately, this is the second x-ray that showed his left femur head not forming correctly. In this x-ray the head looked like it was fragmented in two instead of one rounded head. Due to this, his ortho is monitoring him for two different conditions- Legg-Calve'-Perthes Avascular Necrosis and Meyers Dysplasia. From my understanding, both could potentially resolve on their own, however this is more likely if it's Meyers dysplasia. From my readings, given that it's presenting unilaterally, his presentation is more consistent with Legg-Calve'-Perthes AVN. Regardless, he will be monitored for the need of possible bracing/surgery to help this issue. His next x-ray they will check his leg-length discrepancy again.
Elliot's oncology appointment went well. His AFP levels were normal, this helps to monitor for liver tumors. His abdominal ultrasound went well and no tumors were seen on exam.
Elliot's follow up neurosurgery wasn't necessarily good but also not bad. His MRI showed that the surgery was successful at resolving the chiari malformation, however, there was no improvement in his spinal syrinxes. The neurosurgeon said that sometimes this happens and it just takes more time for these to decrease and for CSF flow to normalize. So for now he will be monitored and we will have another MRI next year.
We had our semi-annual review for early intervention. Elliot will continue with speech therapy. We've decided to opt out of PT and OT for now due to our schedule and the improvements we've seen in his physical development. Early intervention has also scheduled his pre-school transition meeting since he will be turning three in about 6 months. This will help us with starting the process to get him enrolled into public preschool and setting up either a 504 plan or IEP to help address his academic needs related to his developmental delays. Elliot's speech therapist also has brought up the possibility that he may have what is called speech apraxia, and recommended that we get him an AAC device to help with communication. The device has been ordered and we will start his 30 day trial with this later this year.
From the end of July to the end of September, Elliot participated in the Toddler of the Year competition put on by Hasbro. Out of more than 200,000 toddlers he made it to the final round. They haven't announced the winner yet, so stayed tuned for that. During the competition, Elliot's community/support helped to raise tens of thousands of dollars for Toys for Tots! He also was featured by one of our local news stations and the police department invited us for a tour.
It's been a busy few months, and I know the next few months will follow suit with the holidays. If you've gotten this far, thanks for reading!
Here's a link to our WNKY news story:
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