Sorry, it’s a long one!

Well it’s been about a month since I’ve updated, so it’ll be a little lengthy of a post. Fisher girl is doing pretty good overall! We have started developmental therapy twice a month (they come to the house which is nice) and we started feeding therapy today.

We had our feeding therapy evaluation last week and Fisher qualified for the therapy, which I expected she would, and they told us she would qualify for OT as well, just due to her condition. One of the main things we realized today, is her jaw is set back farther than normal. This is causing her bottom lip to be sucked in when nursing (another reason we need the nipple shield still rather than breastfeeding without it.)

So what exactly do we do for this? One of our two awesome feeding therapist, Linda, went over different stretches we are going to do to help move her jaw. We worked on the jaw, moving her ribs downward and stretching her neck down as well since she’s uptight kinda like a turtle scrunched up lol

I noticed a difference in her neck after today’s therapy, which is insane to think of how quick this can help! Fisher really enjoyed the therapy today and so we will continue to work on these stretches and massages multiple times a day and go back next week for a follow up.

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We are scheduled for our first Physical Therapy next week, along with G.I. Follow up, OT evaluation, and feeding therapy follow up. Also, we are a month into completely dairy free and we have noticed a HUGE difference in Fisher overall. Her reflux is still ridiculous, but she isn’t in extreme pain anymore.

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On a side note, this momma has started back to work part time and Fisher has the luxury of coming with me! We’re working MWF in the morning! I’ve also started teaching with VIPkid online. I had my first student on Monday at 5:30 a.m. I know you’re thinking I’m crazy for getting up so early for one class, but I’m hoping after another month or two, I’ll be able to have several early morning classes while the kids sleep, then work at the office about 12 hours a week until Fisher isn’t able to handle going with me anymore. I am beyond blessed to have such an amazing boss to allow me to bring Fisher with me. I hope we can make it work as long as possible 🙂

With Christmas right around the corner, we are preparing for our sweet Fish’s first Christmas and first visit with Santa! Big brother is so excited and can’t wait to see what he will bring them both. Overall, we are most excited for family time! We can’t wait for Gram, Grand-daddy and Joseph to be home, as well as going to visit all of Bobby’s side of the family in MO. We sure do miss our MawMaw, PawPaw, aunts, uncles, and cousins. We will be headed to MO the weekend after Christmas to spend with them!

I will post next week after all of Fisher’s therapies and update everyone how Fisher’s first Thanksgiving went!!

G.I. and more

Luckily Vandy GI was able to get us in so quickly! We met with a nurse practitioner and she couldn’t figure out why we were there. I explained how our pediatrician was concerned with Fishers growth and how she was declining on the growth charts. They use different charts and said she looked normal. Fisher has been gaining half an ounce a day which is normal. She did change her reflux meds from 2 ml once a day to 1.5 ml twice a day. We also will go back in 2 weeks for a weight check and GI follow up in a month.

I’m trying to keep track of what I eat and see what effects Fisher through my diet. The last couple weeks she has had colic days where she screams and cries uncontrollably. Nothing soothes her. She draws up in pain (like gas/stomach pains) I eat very little dairy, usually only a little cheese here and there, but nothing major. The only thing I’ve increased has been sugar. So here goes to eliminating all dairy and visible sugar (any sweets) to try and help my sweet girl.

We also got a call today, Fisher’s 2 day EEG is scheduled for January 7th.

4 month check..

Today was Fisher’s 4 month check up with Dr. Lohse. We went into this appointment with only a couple of questions.

1. Should we be worried about her head circumference? Is it too large.. or is it okay…

2. Her blood pressure was a little high yesterday, we’re supposed to check her kidneys at 6 months, should we do it before 6 months or are we okay to wait?

Positive- Fisher’s got a large head but she was born with a larger head. Therefore her head is normal for her 🤣

Positive- Dr. Lohse isn’t worried about her BP/Kidney function right now but will evaluate it at 6 months again.

Not so positive- Even though Fisher is gaining weight and growing, she’s decreasing on the growth chart drastically. This is very concerning to Dr. Lohse and she would like us to see GI soon.

TEIS came by today for about an hour and a half to finish paperwork and set up a referral for PT and OT evaluation. Fisher will have Developmental Therapy twice a week in home starting out. Then once approved we will start PT and OT ASAP.

So whats next:

GI appointment tomorrow (yes crazy fast, they just called me)

Waiting for phone call to schedule full 24-48 hour EEG

Waiting for PT and OT evaluations

Genetics follow up in 2 weeks

EEG Follow Up

We went for Fisher’s follow up today to get her EEG results. They informed us that the results came back normal. Most people would be excited to hear this news, unfortunately, that’s not how my mind works.

I immediately asked how they expected to see abnormal brain activity or a seizure when what we believe is a seizure is so random throughout the day. The doctor came back and agreed that it’s hard to tell with the 20 minute EEG and given Fisher’s syndrome she would like to do a 24-48 hour test. (This is what I wanted all along, and made way more sense to me, but who’s asking)

The doctor asked when we thought she was having a seizure, what did we try to get her attention/ snap out of it… I told her we would yell, clap our hands, whistle, and try stimulating her chest/ feet. She then asked if I tried picking her up and yelling her name….. well I don’t know about you, but my 4 month old hasn’t fully learned her name yet and I didn’t think picking her up during a seizure was an option… needless to say, we need to try more when we think she has a seizure to get her to ” snap out of it” (she’s hoping we can tell between day dreaming and actual seizure)

So she put in an order for the 24-48 hour EEG testing. Once scheduled, they will admit her to Vanderbilt and hook her up to everything and monitor her for 24-48 hours. During this time if we notice what we think is a seizure we are to notify them, and it’ll “highlight” that part of the test.

Praying we can get this done sooner rather than later. I know the doctors are doing all they can, but this mama has her gut intuition and it definitely wasn’t the same results as the 20 minute EEG.

Tomorrow. Tuesday. We meet with Dr. Lohse for Fisher’s 4 month checkup in the morning and have TEIS coming out at noon for Fisher’s paperwork/ to schedule her therapies. (FINALLY)

Below are some pics of today’s doctors adventure, and a great real life picture of mom at the end of a very busy and exhausting day! #BagsForDays #needsleep

Success…

Will continue to update tomorrow 😘

EEG

Well we survived! When we scheduled Fisher’s EEG they told us she was only allowed 5-6 hours of sleep the night before and no nap on the way to the Office. I told the scheduler she was batshit crazy and asked who was going to pay for my coffee all day due to the lack of sleep I’d have.. they thought I was funny.. I was dead serious.

Last night was one for the books. Fisher fell asleep around midnight and slept off and on every 30 mins until around 4:00 am. During this 12-4 period she screamed and cried, nothing helped. It was probably the amount of caffeine I took in yesterday effecting her and making her cranky 🤣

11:00-11:30 going strong

4:07 am She sneezed mid photo

Headed to our appointment, Friday 8:30 am.. running off of less than 5 hours of sleep!

All hooked up, ready to rock and roll!

We survived! Gel hair.. need a bath and nap!!

We meet with the neurologist Monday at 3:00 for results. 🙏🏻

First Halloween

Fisher’s first Halloween was a success! She was a little Sweet Pea.

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Halloween morning, Wells woke us up, telling us he can’t wait to trick or treat and how Mommy would be Elastigirl and Daddy would be MacnaMerica (Captain America)… This was news to us, as we didn’t plan on dressing up! So I immediately got on my phone looking up costumes in Franklin. Since I’m currently not working, and stay home taking care of Fisher, there was NO WAY I could fathom spending $50 on each costume for us to wear for a couple of hours.

Being as I try to be crafty (most of the time it fails), Fisher and I headed out to Hobby Lobby. I gathered up sheets of felt to make my Incredibles symbol, a mask with spray paint to hide Elastigirl’s identity, as well as, a red bag and felt to make Wells a Flash bag to trick or treat with. (Hobby Lobby Total Under $7.00) Once we left the Hobs, we went to Target. By this point, Fisher was crying, super gassy, and was ready to get home to eat. We quickly picked up a Captain America T-shirt for Bobby, as well as a $3 foam shield, a plain red t-shirt for myself, and then went to find the final piece, Captain America’s Face Mask. When I looked online before we went, it said Limited Availability… Which really means good luck trying to sort through all of the left over Halloween crap and probably won’t find one..

So we walked and searched.. I went up and down every Halloween isle and dug through the remnants of the left over Halloween costumes. Fisher was screaming hysterically at this point, people staring, as I carried her and pushing the stroller.. I stopped and just prayed. ” Please Lord let me find a Captain America mask so I don’t have to go to the other Target” I began to walk again, screaming baby in hand, and turned the corner.. There on there ground was ONE CAPTAIN AMERICA MASK! ONE! Probably the LAST one of the Limited Availability section. God is good and answered my prayers. He knew we wouldn’t last the car ride or store search with my tired, hungry, and miserable baby. (Target Total Under $27.00) —— Total for our amazingly awesome costumes: Under $34.00 for the two!)

Once we got home, I got Fisher settled and fed, she conked out.. I started creating our costumes. Felt… did I mention I HATE felt? I mean its great for cheap material, but cutting felt is a royal pain in the arse. I mean, I can cut a circle.. but when I cut the felt, it looked like I let Wells cut it… Oh well. it was the thought that counts right?

Anyways, once all costumes were completed, Bobby got home, we went and picked Wells up from school. When he saw us dressed up, you would have thought he was seeing the real Captain America and Elastigirl. He was beyond ecstatic. We went to Poppy Gaga’s neighborhood first and visited the kids Didi and neighbors, before we went to our neighborhood. Which bye the way, we have Ellie’s Donuts as our neighbors, and every year they set up and pass out bags of mini donuts! They are the sweetest (literally) What more could you ask for on Halloween 😉

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Fisher loved all 10 minutes of Trick or Treating, before she passed out. Wells was on cloud nine running around with his Daddy and Gaga, while Poppy and I slowly strolled Fisher around the neighborhood. I can’t wait until next year when Fisher will hopefully be running house to house with her big brother!

P.S. The $12.00 Captain American shirt was the best investment. Wells makes Bobby wear it every day now.. lol Watch out world. there’s a new hero in town!

Absent.

Monday, 10/22/18, was a big day for Fisher and myself as we had multiple doctors appointments. Over the last month I felt like Fisher was having “silent seizures”, as well as one of her eyes would drift to the side, while the other would focus. Also, her reflux had gotten so bad she was spitting up half of her milk every feed, and nothing seemed to work. So first thing Monday morning, we set out for our weekly adjustment, and then off to see some of her other doctors.

1st appointment: Dr. Sweeney, Chiropractor

We have been seeing Dr. Sweeney and Dr. Gebhardt at 180 Chiropractic and Wellness in Franklin. I highly recommend them for the whole family! We are all 4 getting adjusted 3 times a week, and I can tell a difference not only in myself, but the kids as well. Not much to say about this appointment, since it’s pretty quick and easy, in and out. 🙂

2nd appointment: Dr. Lohse, Pediatrician 

Luckily, Bobby caught one of Fishers seizures on video the previous weekend, so I was able to show it to the doctor. She confirmed that she was having Absent Seizures. **Absent Seizures– a type of seizure that involves brief, sudden lapses in attention. Someone having an absence seizure may appear to stare into space for a few seconds. Other symptoms include lip smacking, eyelid fluttering, and chewing motions.**

Dr. Lohse decided that she would send an urgent referral to Vanderbilt Neurology for an EEG and consult. We will have our first appointment on November 9th for this.

We also determined that Fisher has Intermittent Exotropia. **Exotropia is a form of strabismus (eye misalignment) in which one or both of the eyes turn outward. It is the opposite of crossed eyes, or esotropia.** She should outgrow this overtime, but we will keep an eye on it, no pun intended 🙂

Lastly, we decided to up her meds for her reflux. (We are already going to the chiropractor 3 times a week, so between the two, we should see improvement.)

 

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3rd Appointment: Dr. Prather, Lip & Tongue Tie Specialist 

Since Fisher was spitting up a lot more than usual, I reached out to my breastfeeding group and was introduced to Dr. Prather. She recommended getting evaluated for a lip, tongue, and/or cheek ties. We got to Dr. Prather’s office, and everyone was so sweet. They  were patient with me while I breastfed Fisher and filled paperwork out at the same time. (Yes when you have 2 kids, you learn to multitask very well breastfeeding)

We met with Dr. Prather and she got a little back story about Fisher and that we already had her tongue tie clipped week one in Williamson’s NICU.  After the evaluation, she determined, Fisher’s tongue tie came back, she has an upper lip tie, as well as slight cheek ties on both sides. She recommended that we do OT before she does the revisions on all of her ties.

Next Steps: Where we go from here…

So basically it is a waiting game now. We wait on TEIS to approve Fisher for her therapy (PT and OT). Once we get OT rolling, we can move on and get the Lip/Tongue/Cheek tie revisions. We also have to wait 2 weeks until we can get into Neurology, and see what’s going on with the seizures. So like I said, we wait. Anxiously.. Patiently.. We wait…

 

Did my water just break? Part 1

On Thursday July 12th, I was 34 weeks 6 days pregnant. My day started just like any other day, except I had a little cramping and very little spotting. Nothing out of the ordinary because Fisher’s pregnancy wasn’t the easiest. She definitely put me through the ringer to say the least. I’ll save that post for another day. I got to work around 8:15 and started work like usual. I remember working on a couple insurance claims and getting stressed out (nothing out of the norm especially if you’ve fought with an insurance company for 7 months you’d know the stress) I told Jill and Jennifer, “This shit is going to put me into early labor?” Totally kidding at the time.

Around 11:45 am, I had a walk in patient and I was helping with her mothers hearing aid. I was standing talking to her and felt “the gush”. I calmly kept talking to the patient, and told her I would go check on her mothers file in the back and be right back. I actually walked to the back to the patients file and started to read it and then realized I probably should go to the bathroom and check out what was going on. Everything looked normal, just looked like I peed a little… I went back up and started talking to the patient again and “the gush” happened again. At this point I thought ” Yup that definitely was a gush, it had to be my water breaking.” So I told the patient to give me a call and we would get her mother an appointment for a later date. I then called Bobby, my mom, and then Jennifer and Cindy which were down the way eating lunch with a rep. I can still picture them running past the windows, into the office, asking what happened.

I called the doctors office and told them what was happening and they told me to come on over and they would check me out. Luckily I called before 12 since they close for lunch from 12-1.. When I got there and they swabbed me to check the fluids to see if they were actually my “bag of waters.” She then checked me and I was only at 1cm dilated. Once she came back from the swab results, she told me my water didn’t break. The swab did not show any fluids from my bag of waters.. Dumbfounded.. Like WHAT.. I did NOT pee on myself. I kept telling them, I swear it was my water breaking. They told me to go home, relax and lay down for an hour. See if I had “the gush” again after I stood up.

So Bobby and I went home, fixed and ate lunch, and then it happened! Over a 30 minute period I had “the gush” happen multiple times. It didn’t matter if I was standing, sitting, laying down, it kept coming. I finally called the office again and asked how long to wait and how much fluid was acceptable to loose before freaking out. They called me back and told me to come back in to be checked again. This time when the doctor came in she said she would check me and do another swab. She lifted sheet and said “Yep, your water broke” I asked if she was going to check me again and she said she didn’t have to, she could see it was broken by the fluids on the table.

So there we were, 34 weeks 6 days, almost 5 weeks early, being wisked away to labor and delivery. I was NOT ready. I still had 5 weeks. 5 weeks to work. 5 weeks to spend with my baby boy. 5 weeks to enjoy the kicks and flips of her inside me. 5 weeks too early…..

My last couple pictures while pregnant…

4th of July, 33 weeks pregnant, Labor and Delivery waiting it out…

Who, What, When, Where…

My name is Anna Brinker, and I started this blog to keep everyone up to date with what is going on with Fisher and her 2q37 deletion syndrome journey. I will be posting updates as well as going back and telling stories of “what happened”.  Feel free to reach out to me with any questions. As always, we greatly appreciate all of the love, support, and prayers.

Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. – Romans 5: 3-5

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Photo by: Shayna Thompson, Shay’s Shots