Genetics Exam

Last week LadyBug had her annual Genetics exam with Dr. Viskochil. Things went really well! No new NF signs or symptoms! Hip-Hip-Horray!

Our girl did really well. The two week break over the holidays was amazing but it seemed to have spiked a lot of fear and anxiety of our girl. Going to the lab the night before was all out tantrum city. She was terrified to go back to the hospital. As soon as we hit downtown SLC she knew exactly where we were going …tears started streaming down her face as she begged us to take her home. Possibly the worst part of the day-Rips your hearts out when you know it’s what’s best for her, but try explaining that to a two year old. 

HEADING OVER TO THE ECCLES BUILDING

This appointment marked out first appointment at the new Eccles Primary Children’s Outpatient Building. What a beautiful building… if Primary Children’s does one thing right, they sure know how to take care of those kiddos! Everything is geared towards the kiddos. LadyBug had so much checking everything out!

OF COURSE SHE FOUND HER FAVORITE ANIMALS

PLAYED A LITTLE MATCH GAME

After checking in and getting in a little play time we headed back to meet with Dr. Viskochil. We did a quick count of any new spots and moved on to checking out everything else…

First area of concern was Rylie’s height and weight. Little miss is currently in the third percentile. In the last year her growth seems to have stalled out… she hasn’t gained any weight (likely explained by the chemotherapy and its side effects) and has not grown an inch. Oddly she seems taller to us but according to the measurements she has not grown an inch…. NF kids are typically smaller than family history would dictate. LadyBug has always followed that pattern. She has always been under the tenth percentile and has always been below the “normal” growth curve, but lately her growth lines have remained the same. While the weight is easily explained the height is not. Dr. Viskochil is ordering some lab work to check out her thyroid and her pituitary gland. With optic nerve gliomas they usually sit on or close to the pituitary gland causing some issues with growth. Her labs will let us know if there is a problem and how we should proceed if needed in the future.

Second area of concern… her sleep pattern, or lack thereof. Given everything she is going through sleep is very important. We have to figure out a way to get her some adequate rest. She is currently averaging about 4 hours of sleep per night! Which, only results in more break downs and behavioral problems. Hopefully the specialist will be able to guide us in the right direction.

The last thing we spoke to Dr. Viskchil about was the possibility of other NF tumors. This year has been a year full of fear and anxiety. Optic Nerve Gliomas are not the only type of tumors children with NF get. There are so many other types. As we learn more ab0ut NF we feel more prepared to take on this disorder… but it also scares the hell out of us! If I had my way I would scan her whole body every night before bed! The doctors, however, don’t think that’s quite necessary…. That might be the crazy mama bear coming out, or so they say. Dr. Viskochil was kind enough to put my momma fears at ease. More often than not NF tumors are present but require no treatment. As a matter of fact when LadyBug’s tumor was found last February we were told we would likely not have to do any treatment for a few years, if ever. The fact her tumor progressed so quickly is completely out of the normal. Because everything in our lives lately is so out of the normal we are in constant fear everything will be worse case scenario. A few other NF specialist we know of do what is called a baseline MRI, a scan of the entire body to check for tumors we may need to watch for. MRI’s and how frequently they should be preformed are something that is currently hotly debated. Some believe it’s not safe for kids to have MRI’s so frequently, others feel it’s needed to monitor NF signs and symptoms. At this time LadyBug does not show any other symptoms so there does not seem to be a substantial reason to perform such a long MRI… Logically this all makes sense…. Emotionally it’s something we, I, still struggle with. I don’t like surprises. I would just rather know. I would just rather be prepared for any scenario we “may” have to deal with… At this point I guess we see how things go and re-evaluate if we feel it’s needed.

For now... We eat M&M's!