Well we have had a very busy last two weeks!
Last Monday we had Fishers 6 month check up with Dr. Lohse. Everything looked good except sweet girl hasn’t been gaining weight like she should. She’s in the 1st percentile for weight. Dr. Lohse called for Fisher to get her hearing tested again as well as, get her Kidney scanned. Since Fisher is at higher risk for Wilms Timor, We are set for scans every six months.
The next day we had fishers GI follow up. Stacie was concerned with Fisher’s weight gain, or lack there of. She wanted to supplement some formula, but I was against it. Since we are at 6 months now, we are allowed to start solids after her swallow study!
Wednesday, Bobby and Fisher took a fall down the stairs. Luckily neither of them were hurt! That night Fisher started “snoring” and sounded congested. We waited it out thinking it was just related to the fall. We took her Saturday to get adjusted and to see her pediatrician. Fisher had an ear infection and congestion. They wanted to do another round of antibiotics (the same one that gave her thrush) and we decided to try to heal it all naturally without the antibiotics. Thankfully we were able to with garlic drops and adjustments 🙂
Fast forward to this week….
Fisher had her neurology follow up on Monday afternoon! Aunt BaeBae went with us and talked with the neurologist about her EEG.
We talked about the results and how there was no seizure activity (yay!!) and that we would follow up in 6 months for another check. Other than that were done with neuro for half a year!
Thursday, we had to be at Vanderbilt by 7:30 for her swallow study and kidney scan. Big brother Wells came with us to make sure sister was okay!
Fisher did AMAZING during the swallow study! She didn’t aspirate at all. She did have some “extra phlegm” sitting down in the back of their throat but she cleared it and did beautifully! So proud of her!
We left there and took Wells to school, Bobby went to work, and Fisher and I prepared for our two therapies. We went to feeding therapy where Fisher tried some organic oatmeal and she LOVED it!!
Were gonna work on feeding her oatmeal once a day for a week, then try some greens!
We went to Occupational Therapy after Feeding Therapy and Fisher did fairly good grabbing toys and bringing her hands together! We’re still so close to rolling over.. maybe just another week or two!
After therapy we left and went by the store to grab a couple of things before we headed home… thats when I missed a call from Dr. Lohse. She left a message asking me to call her back before the end of the day to go over Fishers Kinsey Scan results.
I immediately called back and here’s what we found out..
Her kidneys did not show any tumors- so we are in the clear for Wilms Tumor for right now.
Fishers right kidney is normal.
Fishers left kidney is abnormal. She has a malrotated duplex left kidney.
Okay okay. What does this mean? Well, basically if we interpreted it correctly, her left kidney is rotated upside down and has an extra part on top of it, like stacked up. We will now have to see a nephrologist. (#1 added to our list of specialist)
And then they checked her adrenal glands.
They found a small nodule on her left adrenal gland. It was so small it would only be able to be seen on an ultrasound. Dr. Lohse spoke with a doctor at Vanderbilt and decided it would be best if we were seen fairly soon. We have an appointment on Tuesday to see a Hematologist. (#2 added to our list of specialist)
Since Fisher is already more at risk for Wilms Tumor, and her syndrome is so rare. They aren’t sure if she’s more prone to getting other tumors, therefore they want to do bloodwork and urine work and then monitor her nodule very closely.
Of course I immediately had to “go there”. Why couldn’t we just have one good day. One day of accomplishments. One day of all positives. One day where things didn’t take a turn of uncertainty. But then I was reminded that we can live without a kidney and most adrenal nodules are benign. Very rarely are they malignant. (Then again our girl is very rare and lately if things can happen they do.)
So now we have added two more specialists to our list. What’s two more?
We’re all staying positive! We continue to pray and know that a God has a plan for us. He has Fisher in his hands and even though these are viewed as minor setbacks, we can only move forward!
Please continue to keep our sweet, beautiful girl in your prayers. She is so strong and tough, I try to pull my strength from her. She radiates with beauty and personality. I am forever grateful she’s ours.