We made it!

I bet you’re wondering “how in the hell did she get 3 posts done in one day?” Well, it is currently May 23rd as I write this and I’m sitting at Vanderbilt Children’s ER in Franklin watching Fisher sleep. We’ve been here since yesterday afternoon for severe dehydration and low glucose levels due to a nasty virus. I figured, if I’m going to be awake all night I can update the blog! What a success that was! I not only recapped 2020 but knocked out the beginning of 2021!

The New Year came and went.. so did our Christmas celebration with Bobby’s parents…my birthday.. Valentine’s Day.. St. Patrick’s day.. and Gaga’s birthday.We had snow and lots of it! I got my angel fish tattoo for my sweet little fish! I highly recommend True Eden Studios for your next tattoo!! Fisher cheered Wells on during his soccer games, especially when he’d score a goal!

We had the most wonderful time at the beach a couple weeks ago. The weather was beautiful and the kids loved the sand and water.

Wednesday, Fisher had a great day, other than 4 nosebleeds! She was evaluated for a kid walk and wheelchair at school and both are going to be amazing tools to help her be more independent!

She had a swollen eye, but I figured it was allergies. Later that night she spiked a 106.2 fever and started throwing up. Thursday she ran 102 pretty much all day and Friday she had reduced fever but had a nasty cough and vomiting. She couldn’t keep anything down so Bobby took her to the doctor. They said she looked great and it was just a virus and to wait it out. Fast forward to Friday night, she threw up bile too many times to count. We decided Saturday early afternoon, it was best to take her into the ER for fluids because she couldn’t keep anything down and had been asleep basically for 24 hours with little wake up times. They ran labs and determined she just has a virus, but she was severely dehydrated and her glucose levels were low. They started an IV with fluids and sugars and admitted us for the night. Around 4:00 am I saw some life in my girl! She woke up and “talked” to me! She even took a couple sips of water! 🙌🏻 she’s back asleep now but it definitely feels amazing to see some life back in our girl! —- edit: we were able to go home Sunday evening because she was able to drink 6 oz of water. She still has a bad cough, but she’s definitely on the mend!

Please continue to pray for our Sweetest Little Fish as she continues to jump all of the hurdles thrown her way. Our girl is strong and a fighter. I can’t say thank you enough to all of our friends and family that always support us! We love you all and are so thankful for each and every one of you!

Not the year we expected pt. 2

We had lots of fun with Mamaw bowling and eating popsicles! We spent time with friends and celebrated Halloween!

Fall family pictures from the amazing Shayna Thompson!!!

We celebrated Thanksgiving and Christmas.. with a hospital visit in between!

Overall, 2020 was not what we expected but we were able to slow down and enjoy time with family and friends. We had so many positives and mountains climbed from Fisher and she continues to amaze us everyday!

As always, thank you for the love, prayers, and support of our family as we navigate through our crazy life!

Not the year we expected.

So remember when I said 2020 was our year. That I’d actually write a blog post and keep everyone updated… well I made that New Year resolution before I knew what 2020 would hold.

So much has happened in the Brinker’s lives since March of 2020 when I last updated everyone. I’ll try to keep this short and sweet, but mainly flood the page with pictures, because who doesn’t love to look at cute kids!

We had an amazing beach trip in May right before Fisher’s surgery and loved getting to spend time with the family!

Our sweet Fish learned to crawl during the crazy pandemic. Thanks to Covid we were all home to witness it and enjoy it together.

Fisher had surgery on her right eye to correct the intermittent exotropia, supraglottoplasty to help with her LM and sleep apnea, removed an adenoid that grew back, and cauterized her nose for her excessive nose bleeds. Surgery was smooth and she recovered well. Her sleep apnea went from severe to mild/moderate which is amazing news! We will continue to monitor it and hope she outgrows the remainder of the sleep apnea.

We did lots of standing in our stander, had a great memorial day weekend with family, and had lots of fun celebrating Wells turning 5 and spending 4th of July with some of our favorite people!!

I had some amazing pictures taken in July of Fisher in my moms clothes from when she was little. I can not thank Shayna Thompson enough for her amazing work she does capturing my girl and our family!

We celebrated Fisher Rae turning 2 with a bubble themed party!

After her birthday we spent lots of time outside, playing with toys and working hard on learning to stand and walk with assistance! Both kids started school in August! Wells started kindergarten and Fisher started at High Hopes part time. Fun times at the river with Poppy, Gaga, Gram, and Grand-daddy (Photo dump)

Continued on the next page….

Hello 2020

Well that was quick… didn’t expect January to come and go so quickly! Most people complained that it was forever long but for me it went in the blink of an eye (I think that’s the saying).

February was just as busy and as you can see I’ve broken my New Years resolution by not updating more often. So here’s our update! I’m making this short and sweet.. straight to the point and a ton of pictures!

We had multiple doctors appointments, a sleep study, ordered orthopedic braces and received them, received approval for the squiggle stander and got it in, and applied/accepted into a research program with Belmont/Vanderbilt! (I told ya it was a busy and eventful two months)

-Allergist: Fisher still has her FPIES with oats, avocados, and dairy.

-ENT: We had another sleep study and the results came back that Fisher still has severe sleep apnea. It is more obstructive than central, which is easier to work with. We were given two options.. surgery or a CPAP machine. We decided to try the CPAP machine but it is looking like we will need surgery. She doesn’t tolerate it .. at all.

Physical Therapy: Fisher chose the flamingo 🦩 orthotic braces and we got them in.. she LOVES them! They definitely help while she tries to scoot her feet around the floor in a circle. We also received her squiggle stander. She stands in it for 15 minutes in the morning and 15 minutes at night. We will eventually work our way up to 1 hour in the morning and 1 hour at night. Once she can tolerate more we will increase it slowly.

We applied for Fisher to be a part of the Go Baby Go Car research program at Vanderbilt and Belmont. This is for special needs children that are not mobile to help them get around other than being carried. Since Fisher can’t crawl/stand/walk, she was perfect for the study. We received her car and she rides in it daily. There is a green button she presses on the button to make the car move, and I steer it.

Here are some pics from the past 2 months..

Not only have we had lots of new gadgets added to Fisher’s list of “toys” we have had some not so great days. On February 7th I developed a bunch of red bumps on my stomach. I didn’t think anything of it until more popped up and they started itching. I went to the dermatologist on February 14th where they took a punch biopsy and put two stitches in. The nurse practitioner believed what I had/have is called “pityriasis lichenoides”. This is an uncommon skin disease with an unknown cause… I now have over 100 red “spots” over my body, mainly on my stomach, chest, and back but they have moved down my arms, into my hair, and down my legs. I was given a steroid cream to use for 2 weeks which is now up. I only tell you this, so if you have had this or have any suggestions on how to get rid of it, please let me know!!

Lastly, on our update for Fish. We ended our Monday night with a call to 911 and a visit from the paramedics. While I was making Fisher a bottle last night, I noticed her nose started bleeding. I immediately picked her up and it started flowing out even more. We’re used to nose bleeds since her surgery back in October, but this one was different. I tilted her head back and when I did she cried out opening her mouth for me to see a mouthful of blood. I thought ..Okkkk this is a ton of blood… I say her upright and pinched the bridge of her nose and she started choking on the blood.. it just kept coming.. now out of both nostrils and more out of her mouth. Bobby was on his way home from work so I called him and told him to call 911 and I called my mom. Thank goodness my parents live so close, because Wells was screaming crying (I would to at his age and to see all the blood). The ambulance got there right about the time her nose stopped bleeding. She did cough up a very large blood cot, but other than that, they said she checked out and looked/sounded ok. The paramedics told us to visit our ENT this week to get everything checked out further.

I probably wouldn’t have gone to the extreme of calling an ambulance, but since Fisher has been sick with fevers of 102.7-103.5 last week and we’ve been told it’s probably just viral, I couldn’t take any chances.

Please pray for our sweet Fish that this is a one time thing and that it’s nothing serious.. just a severe nose bleed.

**I was able to get Fisher into the ENT today. Dr. Virgin did a scope to see inside her nose and down her throat. After a very lengthy discussion, we have decided to hold off on the CPAP machine and we are going to have surgery. The surgery will be a surpaglottoplasty. He’s also going to thin down the muscles in the back of her tongue. This will hopefully reduce her obstructive sleep apnea to where we don’t need a CPAP machine or if we do, it’ll be a very low dose of air output.**

I want to thank anyone and everyone in advance for the thoughts and prayers. Not only for Fish, but for us as well. It’s not easy being a parent, but it’s hard as hell being a special needs parent. It’s ALWAYS something. We have good days and we have bad days. Some days are harder to stay positive than others, but Bobby tries to remind us, we could have it WAY worse. We are very grateful that nothing has been too severe with Fisher and it is all things we can handle.

CLICK HERE TO DONATE TO FISHER’S MEDICAL FUND

February Update!

Coming this week! Lots of updates on Fisher Rae!

Goodbye 2019!

As we brought 2019 to an end I wanted to recap over our last couple of months before starting off 2020s updates.

We had to postpone Fisher’s hearing test multiple times due to one of her tubes being plugged with dried blood. We finally were able to test her hearing even with a plugged tube, and she passed!! I was so relieved to hear the good news. We will go back in 6 months to follow up with another hearing test.

We had fall family pictures with the oh so talented Shayna Thompson of Shays Shots. Here are a couple of my favorite!

Fisher also had her eye exam. We have been patching her left eye to strengthen her right eye for several months now. I was noticing her right eye drift was getting worse but I kept to the doctors orders and patched daily for 2 hours.

When they re-evaluated Fisher’s eyes they informed me her eyes have gotten worse and the patch made the right eye worse. The doctor informed me sometimes patching can do more damage than good because it doesn’t help the eyes work together. He said he wants to stop patching and go 6 months with nothing.. wait and see if her eyes can work together to strengthen. We will re-evaluate in June and if they haven’t corrected itself then we will have to discuss surgery. Not really what you want to hear for your 17 month old but at least if we had to do surgery, she’d be closer to the age of 2.

We had some great achievements this month! Fisher is trying to sit up on her own (pushing from her back to sitting position). She hasn’t fully mastered it yet, but she’s getting there! She’s eating hummus (man does she love hummus) strawberries, blueberries, peanut butter, muffins, crackers, carrots, oranges and pouches.

Fisher and I went to Friendsgiving dinner while Bobby and Wells stayed home due to Bobby getting pneumonia.. 🤦🏻‍♀️ we had a blast hanging out and playing games with friends! (Only the girls pictures)

We also traveled to Arkansas for Thanksgiving and spent time in the duck woods and at Gram and Grand-daddy’s house! Wells went hunting for the first time and had a blast!

Fisher has her evaluation for a squiggle stander and we have placed the order for hers! It will be in plum (a pink/purple color). I’m hoping to get the stander and braces for her ankles this month!

During the month of December, we had some fun outings.. we met Santa and snagged some awesome pictures with him as a family since it was Fisher’s first time meeting him! We were able to go see Santa without the hassle of waiting in lines and being overstimulated, thanks to Fisher’s Developmental Therapy, Waves. They set up appointment times for each of their special needs kids to see Santa. It was so fun watching Fisher with him.

Santa was very good to both kiddos this year.. Wells received a bow and arrow and Paw Patrol Tower. He also got a drum set from Gram and Granddaddy and some awesome legos, puzzles, and robots from both sets of his grandparents. Fisher got some therapy balls, squigz, beads, books, a chair, etc. Her favorite thing was her xylophone/piano!!

We ended 2019 with a low key hang out with Poppy and GaGa.. and of course went to bed early!

Onto 2020… this is our year.. a year for better health and better opportunities! Please continue to pray for our sweet girl and our family! Next update coming soon! (New year’s resolution.. post more updates regularly!)

CLICK HERE TO DONATE TO FISHERS MEDICAL FUND

Piece of cake..

I want to thank everyone for the thoughts and prayers over the past 3 weeks while Fisher was recovering from surgery. Here’s how it went…

We arrived at Vanderbilt at 9:00 for her Sleep Endoscopy! We talked to Dr. Virgin (her amazing ENT) and he walked us through what the plan was. He wanted to get in and see the size of her tonsils and adenoids, and see how floppy her larynx was. We also talked about putting tubes in. He said if there wasn’t any fluid then he wouldn’t do tubes, but if there was he would go ahead and put them in.

She was in and out in about 45 mins.. There was fluid behind one ear so he went ahead and put tubes in both. He said her tonsils and adenoids were large so he removed both as well. Her larynx wasn’t too floppy so he didn’t do the corrective surgery for her “laryngomalacia”. Dr. Virgin didn’t want to add anymore to her recovery plate if he didn’t have to 🙂 We went and saw our sweet girl as soon as she was in recovery.

We noticed this large bruise like patch on her chest under her neck and one nurse said she had an allergic reaction to the thermometer patch adhesive, and another nurse said it looked as if she was burned by it… not sure which it was but luckily it went away this past weekend!

We had a happy girl for a couple of minutes and then it turned into a cry fest. Once Bobby left for home to see Wells and his mom , I luckily had my parents come up to hold Fish and love on her while I washed bottles, pump parts, and ate! We were so blessed to have Bobby’s mom, Mary come help keep Wells while we focused on Fisher.

Due to the swelling Fisher continued to drop her oxygen levels. This was concerning to me since I was going to be dealing with this at home, I just wouldn’t have their monitor to beep every time she dropped below 88.

Luckily, she was able to bring herself out of the lower levels back to normal pretty quickly without needing oxygen.

The next day, Fisher was drinking about 2-4 oz of milk, which wasn’t back to normal, but she was improving. They asked if I felt comfortable taking her home, and I said yes! I would much rather be home in our own beds instead of the pull out couch.

We has a very very hard first week. I was told if you stay on top of ibuprofen and acetaminophen alternating every 3 hours, she’d be good… we’ll we set timers every 3 hours … 12,3,6,9 – 12,3,6,9 – 12,3,6,9 over and over again. All she did was cry and scream. For a week, this lasted. We were running on about 2-3 hours of sleep each night broke up. This lasted for about 9-10 days. Around day 11 we finally had a break through! Fisher started feeling better, but unfortunately Wells caught the fever virus that was going around, so we were trading one recovering kid for another.

Luckily we got lots of snuggles during this recovery time!

Last weekend we had big fun filled days! We went to watch JB get married Saturday night and we went to Lucky Ladd Farms on Sunday! I won a 4 pack of passes and had to use them this weekend, so Poppy and Gaga went with the kids and me since Bobby was at the Titans game for work!

We had a blast at the wedding and danced it up! Wells waited until the end of the night to snatch a piece of cake before making our way home. Fisher slept through the whole reception, but was wide awake for the ceremony!

Fisher really did have a good time. This was right before we left to go home.

Last Monday, both kids had their well-check visits with Dr. Lohse.

Both kids are doing great and growing slowly but surely. Fisher only lost a couple oz from surgery which is amazing and such a relief. We were worried she’d drop a ton of weight from it. Luckily, she is an eating machine and wants to eat everything now.

This last week was Halloween! IT. WAS. COLD! We debated taking Fisher because it was really cold, but we couldn’t leave her out! So we bundled her up in the stroller and we took off in the neighborhood. Wells was the Flash (same as last year) and Fisher was a pineapple! I had a fish costume but it was way too cold for it. Fisher even tries a piece of chocolate for the first time… I’m pretty positive she has a new love for sugar 🤣

Lastly, Fisher had a great week of therapies this week! This sweet fish worked hard in PT and we have officially put the order in for her orthotics for her feet. We talked about how she can “stand” because she still won’t put any weight on her legs. Sharon (Fishers PT) decided we would get a Squiggles Stander for her. This will allow her to be in the standing positing and hold her legs in place. We aren’t sure when we will get this since it takes a while, so it’s a waiting game with it for now.

During feeding therapy Fisher ate very well and ate several carrots, oranges, and muffins. We did a weight check and sister girl weighed 17lbs 9oz !!!

We have been working realllllly hard on that weight! And in OT, Fisher was able to hang two toys together in midline! Huge success this week during therapy!

So what’s up next you ask? Well, Tuesday, November 5th we go for Fisher’s post-op visit and hearing test. This is kind of a big appointment. If she passes her hearing test, that’s great! It means the failed hearing tests before were due to fluid behind her ears. If she fails again, then that would indicate she has a hearing loss and we would need to address what needs to be done.

Also, depending on the results of the hearing test, if Fisher’s speech doesn’t improve (start talking/babbling more) we will need to start speech therapy ASAP.

We will also have to schedule another sleep study to check and see if her sleep apnea has gone down/gone away.

We appreciate all of the love and support for each and everyone of you! Thank you again and please continue to pray for our sweet little fish.

Click Here: To Donate To Fisher’s Medical Fund

Work hard.. play harder

It’s been a little over a month since I’ve updated everyone! Time flies when you’re having fun, right? Lots to update on our sweet girl!!

Over the past month Fisher has made HUGE improvements! From trying new foods, “chewing” better, sitting up, grabbing things and trying to drop them, to saying mama, dada, and bubba again!

We went to see the allergist and unfortunately Fisher has FPIES. As on now, it’s only with oats and avocados. We are slowly going through the list of foods and trying them out. Luckily

Our allergist appointment started out okay… then Fisher’s nose became impacted with a very large.. booger! So like always, I got my little blue boogie stick to pull it out.. and I guess it was stuck in there a little more than usual and when it came out.. so did an enormous amount of blood. I gave my sweet girl her first bloody nose!!! Blood was everywhere… the more she cries the more it bled. I finally got it cleaned up and stopped bleeding. I pulled my water bottle out of my bag and started to take a drink.. when I did, Fisher grabbed my bottle and squeezed it.. water went everywhere! All over her and me. It was a disaster! If you could have been a fly on the wall, you would have laughed.

Luckily, the prick test went well and Fisher didn’t have any of “those” allergies. Just the FPIES.

We also went to the river for Labor Day! The kids had a blast riding with Bobby in the kayak.

While Fish has been working hard in Physical Therapy … she can now SIT UP!!

This last week she was finally able to manage sitting up by herself. We have worked so hard for this and we couldn’t be more proud!

She might have taken a few falls along the way, but she is sitting strong now.

We still have surgery planned for October 14th, so prayers are greatly appreciated. I know we will have one night in the PICU, but we won’t know exactly how long we will have to stay, until they complete the procedure. Until then, here is your monthly catch up of cuteness…

Click Here: To Donate To Fisher’s Medical Fund

The results are in..

Well as I imagined our Fisher girl has Moderate-Severe Sleep Apnea. More on the severe side. The total number of “episodes” are listed below:

Obstructive Apnea: 26

Mixed Apnea: 8

Central Apnea: 67

Apnea Totals: 101

Hypopneas: 85

Total Apneas/ Hypopneas: 186

Apnea/ Hypopnea Index: 33.0

So what does all of this mean…

Obstructive Sleep Apnea occurs when the muscles relax causing soft tissue in the back of the throat to collapse and block the upper airway. (Basically there’s an obstruction where she can’t breathe)

Central Sleep Apnea occurs because your brain doesn’t send proper signals to the muscles that control your breathing.

Mixed Sleep Apnea is a combination of obstructive and central sleep apnea.

Hypopnea is abnormally slow or shallow breathing.

Hypopnea/Apnea Index is an index used to indicate the severity of sleep apnea. It is represented by the number of apnea and hypopnea events per hour of sleep. Normal would be less than 5 events per hour. Mild is 5-14 events per hour. Moderate is 15-29 events per hour. Severe is 30 or more events per hour.

Since Fisher’s Index was 33, she’s considered severe. So what do we do now you ask?

We are scheduled for surgery. They will do a sleep endoscopy on October 14th, and determine what they need to do. Dr. Virgin said most likely he will have to remove tonsils and adenoids. He will check to see if he will need to correct the laryngomalacia, which he would do while she’s under. He will put tubes in her ears since she has fluid in then since January. We haven’t had many infections, but the fluid just is hanging out.

She will have to stay in the PICU for a little while to be monitored on recovery. Once she is healed, we will do another sleep study. We will want both obstructive and central apnea’s to drop down drastically. If the central sleep apnea number doesn’t come down like he would like, we will have to have another conversation about her possibly having another sleep disorder.

We will also retest her hearing, since she has failed both hearing screenings. We are praying she passes the hearing test this time around, if not, we will have to address the hearing loss issue and possibly talk hearing aids! (It’s a good thing I work for an Audiologists office and know my stuff)

Bobby bought us all amazing t-shirts from “Littlest Warrior”. He got Fisher one that said “not cookie cutter” 😍 it’s absolutely perfect for our special girl.

Fisher went to the ophthalmologist for her drifting eyes. She still has “Intermittent Exotropia”. Basically, the muscles in her eyes are too weak and they will drift off. We are going to have to patch one eye for 2 hours each day, alternating eyes. We will continue this for 4 months and then reevaluate. If the doctor isn’t seeing the results he would like, we will either get more aggressive with the patching, or discuss surgery.

Unfortunately, Fisher HATES the eye patch. She picked and pulled it off, every time we put it on 😂 we will have to purchase some mittens soon in order to keep her from picking it off everyday.

On a positive note, Fisher learned to clap! She loves to clap, even if she doesn’t it very proper 😂

**Excuse my mom voice**

Lasty, on our update for Fish, we tried to reintroduce oatmeal during feeding therapy and about 3 hours after eating it, she started throwing up… a lot. It lasted for about 2 hours until everything was cleared from her system, then she was fine. I spoke with GI at our appointment Monday, and she is referring us to an Allergist to discuss the possibility of Fisher having FPIES. 😩 hopefully not, but I guess we will wait and see.

Fisher is currently trying to push through so nasty seasonal allergies and a possible ear infection. She’s a tough little cookie and is doing amazing handling all of the doctors appointments and therapies.

Please continue to pray for her and our family as we learn to live with this new normal. Some days are harder than others, but we stay positive and know everything we’re doing is worth it for our girl! We appreciate all of the love, support, and prayers!

Click Here: To Donate To Fisher’s Medical Fund

Sleep Study

We don’t have results yet, but as soon as I get them I will fill everyone in 🙂

We received a call yesterday morning(Tuesday) saying they had a cancellation for that evening and we were on the wait list. I happily accepted the offer because our appointment wasn’t until September 30th. 😱

We arrived at the Hyatt Place in Franklin. We checked in and they got us settled in our room. About 30 minutes after being there and hanging out, one of the nurses, Vanessa, came in and said she was going to move us to a different room so she could have Fisher for the night. I was thinking “greattttt here we go gotta pack up the pump, bottle warmer, milk, etc.” but Vanessa was SO nice and helped move us next door. She “upgraded” our room to the handicap room.. bigger bed and everything!! Heck yes! It was totally worth the move over one room lol

I was thinking “yes! I’m going to sleep so good in this big bed with just me and fish” but man was I wrong.

We got Fisher all hooked up, 20 probes on her head, 2 motion monitors on each leg, heart rate monitor, pulse ox monitor, and a cannula. She did great with everything until we had to put her cannula in her nose. She HATED it. I ended up putting socks on her hands so she didn’t pull it off all night.

Luckily Fisher slept through the night, but unfortunately I was woken several times to check things on her from the nurses request. At 3:58 am Fisher started stirring and waking up. I warned up some milk for her and kept her calm since they only needed about 10 more minutes of monitoring. Once it was all done, they took her probes off and we were able to go home! I asked if this was a “wasted” trip, because I was afraid they souls for pick up bed sleep apnea, and the nurse said it was not a wasted trip and they got lots of good readings they can use. We should have the results fairly soon, and then we will set up a game plan on where to go from here!

At 4:30 we went home, gave fisher a bath, and went to sleep for about 3 hours before work!

We are so proud of how well fisher handled everything and I am definitely anxious to get the results and make a game plan!

Please continue to pray for Fisher. She’s a tough cookie and amazes me how strong she is every day!

Click Here: To Support Fisher’s Medical Fund