The good news!

Great news! We got the call, and Fisher’s levels came back normal. Our plan is, we go back on the 26th to scan her adrenal glands and see if the nodule has grown any. If there hasn’t been any change, we are set to have her kidney scans every 3 months. If it has grown or any changes other than going away, we will have to do another urine test.

We also tested out some Oatmeal Cereal with Fisher. She loved it, but it didn’t love her. When we went to G.I. last Tuesday, we tested her poop and found blood in it. So we had to stop the cereal. We waited until it was out of her system and started trying different foods every 3 days. We tried avocados.. didn’t work. It tore her stomach up as well. Sunday we tried peas. She loved peas and peas love her!! Tomorrow we are going to try green beans.

So Foods she can’t handle:

Dairy: Oatmeal Cereal (wheat): Avocados:

Pretty sure the list will grow but for now that’s all πŸ™‚

GI set up an appointment with a nutritionist for Fisher, so we can understand what foods to try and not try.

On February 26th we have about 5 or 6 doctors appointments. So we will update after it. Until then, we just have therapy every week and trying new foods.

A huge thanks to Dani for setting up the fund page for Fishers medical. I am beyond thankful for all of the love and support we have. Things have been tough but we’re making it through. Shares and prayers! Thank you!!

https://www.gofundme.com/baby-fisher-needs-help-with-her-medical-bills?utm_source=facebook&utm_medium=social&utm_campaign=fb_co_shareflow_w

The waiting game..

Well I started this post on Tuesday and time got away from me, as well as, catching that little thing called Strep! So this mama has been stuck in bed since yesterday and trying to feel better! Thank goodness I have an amazing husband, parents, and friends to help out! I honestly don’t think I would have survived without them (yes yes I’m being over dramatic, but try nursing a teething 6 month old and not being able to take in fluids so you become extra dehydrated) anyways.. this post isn’t about me.. here’s what I typed Tuesday….

Today’s the day we had Fisher’s hearing test and hemotology appointment, as well as, Wells’ first dentist apt.

First up, hearing test.. wasn’t really a hearing test just a hearing screening. She failed this. They ran tymps on her and they were flat (which I told the audiologist before hand they’ve been flat all week bc I’ve tested 3 times at our office) anyways.. since she failed the screening and has congestion still, she wanted us to come back in 6 weeks to repeat. If she fails again and has flat tymps again, we will have to see ENT for possible tubes.

Second appointment was to see the hematologists/oncologist… of course when you see this sign you get a little more nervous..

So we met with Dr. Benedetti about the nodule they found on Fisher’s adrenal gland. Here’s what he said: there are three things the nodule could be…

1. A hemorrhage

2. A benign mass

3. Neuroblastoma (a cancer that is treatable and curable)

They did a urine test to see if her adrenal glands are secreting high levels and if so then most likely it’s #3.. if her levels come back low, it’s most likely #1 or #2. We will have another ultrasound in 6 weeks and then push off to every 3 months. Dr. Benedetti doesn’t believe it’s Neuroblastoma, he said it would be very rare if it was.. I had to remind him who we were talking about. We will find out either tomorrow (Friday or Monday at the latest)

On the plus side Fisher rolled over for us on the doctors table!

Then we had Wells’ first dentist appointment! My mom has taken him and since it was their first visit they wouldn’t see him without bobby or me. So off we went as a family to his first appointment and man did he do good!

So so proud of this sweet boy! He seriously was amazing πŸ™‚

Will update everyone as soon as we find out Fisher’s test results!! Until then, please pray the rest of the family doesn’t get strep especially my babies!!

What’s two more?

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 πŸ™‚

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.

The short-lived good news..

Our second night at Vanderbilt for our EEG went pretty good. Bobby brought dinner up to us and snuggled our sweet girl while mama slept some! She also got to FaceTime big brother πŸ™‚

Fisher slept early on so she woke up around 12:00 am and 2:50 am. She was awake off and on every 15-20 mins until later in the afternoon.

We received the good news around 9:00, that Fisher didn’t have any seizures over those 2 days. They did notice some “small dips in activity” but said it was normal for someone with a chromosome syndrome.

They said someone would be in shortly to remove the probes and get us ready for discharge.

How do they apply the probes? Good question! First they take this green “exfoliant” on an extra large q-tip and scrub the spot where the probe will go. Then they dip the probe in a cream and press on the designated area of the head that was scrubbed. Then they take a piece of thin gauze looking stuff that was soaked in some sort of liquid glue. They placed it on top of the probe and used an air gun to dry it super fast.

*Let me remind you, I explained to them multiple times during our stay, how Fisher has externally sensitive skin and how even in the NICU, her diaper rash burned her skin to where she was blistered and bleeding, requiring light and oxygen therapy. *

How do they remove the probes you ask? Well they take a bottle of acetone and squirt it on the glued on gauze, and peel it/ rub it off. Once they pulled off all of the probes they immediate poured more acetone over her head to wipe off extra glue. No I don’t have a video of this, and it’s probably for the best I don’t.

After everything was said and done, my sweet girl was screaming/crying. That’s when both the tech and I noticed. Her words were “she had some breakdown.” This is where there was too much pressure for too long on her skin and it broke down. You can imagine the sick feeling that swelled in my stomach when I saw my girls head and then heard the tech say, “she wasn’t crying from the breakdown, she was crying bc I just poured acetone in open wounds!” She apologized and then the doctor said this happens sometimes but they’d prescribe a cream for it.

h

There were 25 probes and there are about 10 “opened” wounds. They have already started scabbing over, but unfortunately we can’t wash her hair for 48 hours. I tried getting the excess glue and pieces of stranded gauze off but it doesn’t budge. My poor girl is a trooper and staying strong. I know it hurts bc I feel every time she moves her head something’s pressing on one or more spots.

All creamed up

Please Please please pray that she heals quickly. I hate seeing my Fisher girl in pain.

We have several appointments coming up soon (man I feel like I say that in every post.)

We have a follow up for pneumonia with her pediatrician tomorrow along with therapies(OT, FT.). Next week we have her 6 month check up, PT, OT, FT, DT, GI apt, meeting with TEIS, and then my birthday! The next week we have all the same basically, but add in Neuro and Swallow Study!

Thank you again in advance for all of the prayers! We appreciate everyone of them!

One down. One to go.. well maybe two..

We have successfully made it through one night of our 24 hour EEG. We are supposed to stay a total of 2 nights, but depending on if they don’t see any activity, they might keep her for a third night just to be sure.

Just some thoughts. No, of course I don’t want my sweet girl to have a seizure. BUT and this is a huge but, if she is having them or going to, I’m praying it happens now! While we’re here, hooked up to 25 probes and a heart monitor. So please pray that “if she is going to have seizures that one happens while we’re here, otherwise please keep this baby seizure free”

Luckily we’re able to move around the room with these extra long cords! So we can move form the bed to the couch to the chair!

Here are some pictures from our start yesterday to right now, Tuesday at 10:30 am where I’m currently holding my sweet girl, watching her drift off to sleep, which means NAP TIME for mommy!!!

Arrived at Vandy! Waiting on our room.
The beginning of the probes!
Getting loaded up with a new hairdo
Chubby cheeks.. mama loves kissing them!
The beginning of my longest nap ever!!
FaceTime with big brother.
Love my mommy snuggles!
FaceTime big brother again!!
Good morning sweet friends!
FaceTime with my daddy is the best!

Snoozing!

Ha.. jk.. she woke up! That nap was short lived..

Just add it to the list..

Our sweet little Fish is slowly getting better but unfortunately has developed a bad case of oral Thrush. Her poor little mouth is all white and bumpy 😩 And to top it off, Fisher girl is TEETHING!!! No signs of teeth yet, but definitely teething.

Her virus results came in and she tested positive for the coronavirus. They said it should work it’s course and hopefully be out of her system in a week or so (that would be today, so fingers crossed she’s past it!)

Fisher and I spent 3 hours this morning sitting in the courthouse trying to get excused from jury duty! Luckily my sweet Ellie L. had to try and get excused too so I had Aimee and her to hang with for a little while!

After our whole morning was spent in court, we finally were able to leave and make it to Feeding Therapy on time! We chatted about the Swallow Study, which is scheduled for next week (along with the EEG) and decided we need to wait about 2 more weeks until Fisher is able to successfully take a bottle without any issues! We want an accurate reading, and are afraid if we overwhelm her or rush the bottle, we’d be setting her up for failure. So we’ll hold off 2 weeks for the Swallow Study, and stick with just her 24 hour EEG next week!

Prayers our girl starts feeling better soon. Prayers the thrush passes quickly and Mama doesn’t get it! Prayers for SLEEP, oh how I miss sleep. Prayers for relief from teething (and not just relief from nursing πŸ˜‚)

Thank you to everyone who’s been praying for us. It means more than you know!

The beginning of her thrush before it got worse!

A little down time with both my loves. Obviously someone was over pictures!

Here we go again..

Thankfully Christmas was great. Everyone felt okay but not 100%. Fisher finished her antibiotics last Monday for her pneumonia. She still had a nasty cough all week and started having multiple nasty dirty diapers a day (like 5-10) when we’re used to maybe one a day if that! So I called the pediatrician and we went in Thursday to see what was going on.

Sure enough they wanted to do another chest X-ray and see what was going on in there. The doctor confirmed that her pneumonia was worse than before and was now in both lungs! 😩 They decided to put her on a different antibiotic for another 10 days, then reevaluate her again. They also did a viral swab to send off to see if she had any viruses. The doctor also said it was time we do another swallow study to see why she’s aspirating.

So another 10 days of antibiotics (we’re down 4 days already and no improvement) then talk with GI and Feeding Therapy about the swallow study.

Please pray our Fisher girl starts to feel better soon. The last couple days have been extremely hard and she’s been miserable/in pain/not sleeping/crying/screaming. I just need our girl feeling better soon, so prayers are greatly appreciated!!

Here are some pictures of our sweet girl from Thursday-today.. obviously lots of short naps on mom 😊

Christmas!

Christmas was a success! Santa was so good to all of us. Fisher loved her musical toys and most of all spending time with her great gram and great granddaddy!

Wells couldn’t believe Santa brought him everything he asked for, and to 3 different houses 🀣 our house, Poppy GaGas, and Mawmaw Pawpaws House. Man is he spoiled! Thankfully he was thankful and yelled out “thank you Santa!!” πŸ˜‚

Christmas Eve..so far..

Fisher is finally feeling better, PTL!! Of course, now that she’s getting better, Wells gets a snot nose and cough.. story of my life.

Everyone in the Brinker/Wells house is ready for Santa to come! Between baking Christmas treat, to snuggles on the couch, we are patiently awaiting Santa! This is the first year wells really is into Christmas, so we are having a blast waiting for Santa.

We have the whole family here and we couldn’t be more blessed. Not much more to update about fisher in this post, so I’ll just add some pictures and update how the Fish’s First Christmas goes!

Hanging in there..

Our sweet Fisher girl started coughing last week and it was definitely out of the norm. So I decided to take her to the doctor on Saturday. He first said it seemed like the beginning of RSV, so he ran a test. Thank goodness it came back negative! Given Fisher’s history, the doctor wanted to do a chest X-ray to see if she has been aspirating. Sure enough she’s been aspirating and developed pneumonia in her right lung. 😩 She was a trooper though.

Snuggling mommy

Today was a very busy day. We started out up at 4:30 am .. chiropractor at 8:15 am.. work at 8:30-1:00.. 1:40 Doctor Lohse follow up about pneumonia.. 3:00 G.I. follow up. 4:30 pick Wells up .. home for the night..

Snoozing at mommy’s work

Dr. Lohse said she thinks Fisher is on the mend and slowly getting better! We will continue with the antibiotics and getting adjusted.

Pneumonia checkup

G.I. specialist upped Fisher’s reflux meds again and also wants to do another swallow study. We will talk with our feeding therapist on Thursday to see how to go about that since we are only breastfeeding and it might be hard to get a swallow study done that way.

So please continue to pray Fisher starts to feel better, continues to gain weight, the pneumonia is healed before Christmas, and we find answers as to why/how she’s aspirating again.

Tomorrow we have back to back appointments.. Physics Therapy and then her Occupational Therapy Evaluation. Will update again later this week πŸ™‚