We are back in full force with medical appointments and more and more get added everyday. I forgot just how busy this life can be with medically challenged children during our past year. Every moment is worth it but it makes for one tired Momma.
Add in that last week, I photographed a wedding for a dear new friend’s daughter. The bride was absolutely gorgeous, as was the groom and they are the sweetest couple. Really their whole family was just so wonderful.
I forgot how much work weddings are though and how much work photographing, editing, and capturing those beautiful memories really is. I’m proud to say that I got my shots and my work looks so good. I can hardly wait to finish the images for the Bride and Groom to see. I’ll share with you all in a few weeks.
Back to medical life: Monday was a trip two hours from us to the new neuro. Laycie had a scheduled EEG which she did great with. Took around an hour or so to complete. She hates the wires on her face, she tells me. I can’t blame her.
The EEG showed some mild activity during sleep, typical of her patterns in the past. We requested trying to lower her medication dosage since she has had a tonic clonic in more than a year. It will be a slow and risky process, especially with her EEG showing mild activity. However, her issues with medication make it harder to treat her condition the longer we use it. 10 years she’s been on medication for this and she’s tired of taking it, tired of side effects, tired of being out of it.
We really pushed her limits in preparation for this test though. She stayed up until 5am and barely slept on the ride there. She missed two medication doses to allow them to really see what her brain was doing. And it paid off well. He was able to see on the test and he was able to see some of her issues in office. I’m thankful.
Medicaid is giving us some issues with her medication but I think her neuro’s office was able to get that straightened out so today we started her titration down which will take about a month and a half to decrease. Then we will stay at that level for around a month and a half until we see the doctor again. If there is no seizure activity and no tonic clonics then she can continue to wean off the medication little by little.
I’m hoping we can do this for her and have no problems but with Epilepsy, you cannot guess whether it will or will not happen. All we can do is try and hope and pray it works. She’s thrilled to attempt it.
Yesterday we received a call from Emma’s ENT. She had a CT scan a few weeks back and the results came in to show a large polyp in her left nasal cavity. This is something that would have been missed without proper testing and has been missed in the past obviously. We had a follow up scheduled for her today where he explained all he found. She’s also got a case of severe sinusitis that showed up in the scan as well. She’s on Flonase, an antibiotic and steriod for the next 4 weeks to see if the polyp decreases it’s size or grows larger. If there are no changes then she will be going in to have surgery to remove it. It should be a fairly easy surgery.
In two weeks, she will have allergy testing to see if they can determine what she is allergic to and what may have caused this polyp to grow to the size it has. He says it’s definitely allergy related. No surprise knowing our family history of allergies. She definitely gets that from me. In the future she may require allergy drops or shots to treat the issue but we will know more once the testing is completed.
So the next few months will continue with lots of medical appointments for both the girls and adjusting as needed to treatments they need. Jack has an appointment at the beginning of next month following his birthday and we will see what comes of that. Then it will be Win’s turn.
Our medical life is definitely a crazy one and because of it, I am just totally exhausted. I fell asleep today for 5 hours and I am still tired so I will soon be off to sleep for the day. Don is exhausted too and he’s learning just what I have spent my Momma life dealing with. I think he’s a little surprised by the amount of appointments we actually have but this is nothing new for me to deal with. I’m just happy to be able to get them the care they need to fix their health while they are still young.
Until next time…