Ketchup

Lots of things have changed in the last 6 months!

We left our therapy clinic and it was heartbreaking. All our therapists in Washington have been monumental in Beckett's journey and there's no way he would be where he is today without them. We left all our neighbors on Dakota Ave that turned our time there into the most memorable of our military time. We packed up our house, and headed home to Texas! The first six weeks being in Texas were a whirlwind between airbnbs, hotels, families houses, while trying to find a house to buy, and Regan starting his job. So during that time I didn't try to accomplish anything for Beckett beyond getting both boys established with a pediatrician. Most of the other doctors Beckett needed to get into had to be sent referrals by his pediatrician anyway, so that was the best place to start.

Their pediatrician is very sweet, but we've had a few hiccups with her office and their knowledge of Beckett's diagnoses which has been quite shocking. I certainly would have thought they'd have a better understanding on why he doesn't eat solids, or what specialists he needs to be in to see and why it's so important to get things moving...especially when it comes to his nutrition, and even getting him approved for all the different specialists he needs to see regularly. 

Finding a supplier for his formula that takes our insurance was difficult enough, so when I found a company, they had the audacity to tell us that they weren't sure they'd get the formula prescription approved by insurance, so they might not be able to send it out, and if they did send it out, we might get the bill after insurance denied. I've been dealing with insurance with Beckett since he was born, and I'm well aware of what they cover, what we have to cover, how the billing works, and when people try to make me feel like I'm not the one who understands, it's infuriating. Just send my child his food and we will figure out the rest later. I called the pediatrician multiple times in tears because they were sending paperwork over incorrectly, no one could find the correct information, it was exhausting and we were quickly running out of formula that doesn't just exist in the grocery store. After the supplier I found finally sent one month's supply, they came back and said they actually don't take our insurance and they'd send it out for the second month, but again, we'd likely receive a bill to cover the cost of the supply. After this, I had had enough and didn't want to deal with this company anymore, so I was off to find a new supplier.

We got into a new ENT quickly and at the time they were a small piece of his puzzle, so they said they would be here if we ever needed anything. More to come on this soon.

I'm glad we lived in Texas when Beckett was born because at birth he was enrolled in ECI. Then, when we still lived in Washington preparing to move, I did my research based on our county to find the correct contacts. I reached out to ECI so we could re-enroll and get care established through them again. I sent them Beckett's medical records and with him being an automatic qualifier for ECI still (congenital CMV diagnosis), we got on the schedule for initial appointments and evaluations. After speaking with ECI, he got an OT evaluation, Speech evaluation, and an evaluation with an Early Interventionist. Following all their evaluations, OT now comes 3x/month, we see speech 2x/month and the Early Interventionist comes once/month. They will continue coming through January because then he will make the transition to the public school in ECSE.

Early Childhood Special Education is the program in the school district that will be taking Beckett's case moving forward on his birthday. I had a meeting with his Early Interventionist and the SPED coordinator in CCISD, to go over his case and figure out all the specialists that needed to be in his evaluation to see what he's going to require at school. That evaluation is coming up soon, and we'll see what they all determine after observing him and seeing what he needs/what goals he should work toward.

Developmental pediatrics is another piece in his puzzle and we see them through the UTMB network like all his other doctors. It keeps it simpler so they all have access to his entire medical history. He had PT/OT/Speech/Feeding therapy referrals but if I were to move forward with them, he wouldn't be able to go to an outpatient clinic, and they don't have the personnel to see him as frequently as he really needs it. So instead, I found a different clinic, and we are currently on the waitlist to be seen (in addition to what he is going to be receiving from Clear Creek ISD). The best thing that came from this appointment was his nutritionist found us a new formula supply company, and they very quickly and easily got everything figured out for us to start getting our supply through them. Now a few months later, we've yet to receive a bill from the first company...as if I didn't explicitly explain insurance was going to cover it the whole time!

Another specialist we established care with was his new Ophthalmologist. His eyes were dilated, and we waited until they were ready to be checked. His doctor was very nice, and explained the same information as his two other ophthalmologists have seen his condition, but just in a slightly different way. We've always known his left eye was fine, and his right eye had a blind spot. I didn't realize quite how much the macula provided in his vision. With him having a coloboma (hole) of his macula, the macula provides him with 95% of his vision. So yes, we've always known he had peripheral vision on his right eye, but we always thought he was relying heavily on that. Rather, he's only getting 5% of what he could. The doctor then checked his prescription, gave us an updated one and highly recommended he wear his glasses because how crucial it is that we protect his left eye. If something were to happen to his left eye, it would leave him with little to no vision at all. Unfortunately, he has taken to the hearing aids a lot better than he has to his glasses, but we'll work on it!

We met with his new Neurologist and she was also very sweet. She checked his development, and was very please with how mobile he is (as we all are 🙏🏼). She said we don't need another MRI for a while, and we don't need another EEG unless we notice some changes within Beckett. We are truly grateful that he has been seizure free and while we will continue to watch for any signs, we don't have to go back to see her for one year!

The latest specialist we established care with was Audiology. In the past, he's had multiple ABRs through his first year of life, then we tried behavioral tests that were always inconclusive, leading us to do sedated ABRs. The most recent ABR showed he had moderate loss in both ears, but the ranges of the pitches/frequencies were different on each ear. We can't just get a sedation signed off immediately so our initial appointment was to meet our new audiologist so she could see that a behavioral would in fact not be the most conclusive. Go figure, he couldn't perform long enough for them to see any real result. She approved the sedation, and we were on our way. We got down the Galveston for our hearing test, and thankfully living home again my mom can go to these heavy appointments with me! I am quite familiar with the process at this point, so we not so patiently waited for our turn after getting checked in, said our goodbyes and went on to the waiting room. It was about 2.5 hours later, and the doctor came to get me to go over the results. His right ear didn't show any change from last time...still moderate loss on that side. His left side, he was diagnosed with Auditory Neuropathy Spectrum Disorder (ANSD). This means that on the left side, his nerves are working, but they don't always send a signal to his brain telling him what he's hearing. That means that when they do send the signal, he's hearing at a moderate loss, but when they don't send a signal to his brain, that's equal to having profound loss on that side since he's not receiving that information to his brain. There's no predictability or pattern to when the nerve will work, and when it will not. This makes him a candidate for a cochlear implant on his left side, and the implant will bypass the nerve, sending the signal straight to his brain. We have to wait for his audiologist in League City to receive these results, and contact us for next steps.

We've gotten into quite a routine, and I'm glad all the new patient appointments are behind us. Now we just have to keep up with all his care and make the best decisions with the information we have to give him the best support possible!