A reflection

2018 has arrived with quite a bang! Kids returned to school from Christmas break for a whole day! Then a nasty winter storm blew thru and luckily only dumped 3.5 inches of snow in our little slice of heaven. Unfortunately what kept the kids home for another 5 school days was the bitter cold. And I mean we did not make it above freezing for probably 2 solid weeks. Kept everything frozen. 

2017 was a busy year. We celebrated birthdays, holidays and complishments all year long. We have adjusted to civilian life now with Chad being retired for over a year. I quit my job at the hospital in exchange for a much less stressful, higher paying, better hours position at the Naval clinic on base. 

Chase has had a time with his seizures. We saw an uptick in the frequency and different times of seizure activity. And I think we saw our first Tonic Clonic seizure. 

He had a sleep study done that came back clean thank god. 

We have been trialing meds (Trileptal, Depakote, Keppra). We are weaning off depakote and adding Keppra has seemed to keep things at bay. We are being referred to UNC Hospital, Chapel Hill to see the Chief Pediatric Neurologist, Dr. Carney after Dr. B does not think Chase will out grow these seizures. Dr. B also suggested we look into a Vagal Nerve Stimulator (VNS). Chad and I feel we want to see what UNC Chapel Hill suggests and if both are with the same opinion then we will highly consider the surgery. 

Troy is rocking it in 5th grade. He made Principals list for the first semester with all A’s. First time in his life. He’s always made honor roll so this was a very proud moment for him and his momma! He has also decided he wants to just keep with soccer. As much as I want both the boys to play baseball I knew one day Troy would not want to do it. Baseball seems to be his brothers sport. Troy is also really into Space. Like everything else in the past (I think he has a touch of Aspergers- which is a self diagnosis on my part), once he gets fixated on something he will know everything there is to know about it. I’m just glad we have moved past Thomas the Train fixation. 

Emily is living at home and waitressing. She is still trying to figure out this whole adulting thing. She will turn 21 this year! Shocking I know! Wish I was turning 21 again. 

So we will see what 2018 has in store for us. I have a feeling that big things will happen. Good and bad. But we will journey on. 

The day before...

The day before the appt in Greenville. Asked chase my usual morning questions: how did u sleep? Fine is the answer. Do u have a headache? No is the answer.  Did u have any numbness..... And so far our last episode was that Thursday morning. But today he answered with a hesitant yes. I asked him why he didn't want come wake me? He said that he just didn't want to and didn't want to upset me. I reminded him of how important it was to let me know because I'm documenting for the doc appt. I then went thru my usual battery of questions: was it just ur face! No. Show me where u went numb. Points all down his left side of body this time. I ask if he can smile, which he gives me one of his goofy smiles. I ask if he is still numb. He says he is tingly mainly along his jaw line and cheek. I asked if he had a hard time breathing like last time and he said yes. I asked if he had drooled a lot this time and he said yes. Checked for fever and normal - 98.0. I asked about when did it happen, after mommy put u to bed, middle of night, or just before u got up? He said middle of the night. I'm not really sure what to think. I did not take him to ER like doc said because our appt is tomorrow and he seems to be fine and acting normal now. 

Let the picture speak for itself

Geez, I didn't realize how long it's been since I've blogged. It's funny how time just flies and slips thru your fingers when you are busy raising a family, going back to school yourself and just trying to live. I find that when things happen I turn to blogging. I think it's my way of getting all the thoughts out of my head.

 We have had a situation arise with Chase. It's funny because 2 days before all this started I received a Facebook msg from a sweet lady who stumbled upon my blog regarding Chases bruises and her daughter having the same issue and if I had had any success in finding out what it could be. I updated her but funny how 2 days later we would be faced with another mystery with Chase. Up until then I had pushed my feelings about the bruises, night sweats, swollen lymph nodes to the back of my mind but always in my gut. 

May 27 (Friday) Chase graduated Preschool. The school had a party/picnic outside with bouncy houses, watersides, etc. Upon changing Chase in the bathroom I noticed a new mole on Chase. I don't know if other moms are like me, but I know where every mole is on every one of my children. This was new. So I got a closer look. It was on his back up near his neck. It didn't look like a mole though upon closer inspection. It was shiny. So I scratched at it think it was some kind of dirt or leaf remanent. And low and behold it had legs!! A tick??? NO STINKIN WAY!!!!  I freaked. Grabbed our belongings and dragged chase out to my husband and had him identify it. Sure enough, it was a tick. So he took a pic, I got a first aid kit from school with tweezers and my husband was successful in removing the whole thing. So I swiped the area clean with alcohol pads and put the tick in a ziplock baggy in case we needed to send it off to be identified. In the mean time he sent an email to a tick identification website. They responded in 24 hrs saying it was a nymph lone star tick that didn't seem to be attached for long, less than 24 hours. They also said that this particular kind of tick does not typically transmit Lyme disease, but it's possible. They gave us a list of symptoms to look for and said the earliest symptoms could happen is around the 3 day mark. So they weekend goes by, nothing. I'm going over him with a fine tooth comb and nothing. But I know Monday is the 3rd day which also happens to be Memorial Day. 

So Monday May 30th, morning rolls in and I start my usual routine. Coffee!! Coffee is life! I'm one of these people were you should not really attempt a conversation with me until I've had a cup of coffee. At any rate, sitting at the counter watching my Fox News and drinking my coffee, when chase comes up to the dog gate at the kitchen door (that we keep up to keep the puppy in the kitchen). I lift him over the gate and he sits down by the dog bowls petting the puppy. Next thing I hear is water splashing on the floor so I assume chase was playing in the bowl and it spilled. So I swing around and I see him standing with his hands cupped under his chin with a panicked look on his face with clear liquid just pouring from his mouth. He seems to be holding his breath too. So I get down in his face and I look my sweet baby in his eyes and I ask are you ok? He tries to get out the words I don't know but it's all jumbled and slurred. He seems disoriented and I ask again, what's wrong Chase? He tries again to get out I can't feel my face but this too is jumbled and slurred and he is just being weird with his speech. So I grab a kitchen towel to try to catch all the drool that's pouring out of his mouth like Niagara falls. I immediately grab my phone and snap a few pics of his face. I asked him to smile his biggest smile and try to make a squinty face. You can see in the pics, something is obviously wrong. When Chad comes out of room dressed, I inform him of what's going on. By now chase seems better but still confused as to what just happened. 

The appt line for the clinic opens at 7am, so I call to get an appt. I tell them about the tick and the episode just now and say I'm not sure if they are connected. We get an appt at 1:10. Meanwhile, Chase is hanging out on the couch playing the wii u pad. 11:30, I hear him say Oh no, it's happening again, slurred. So I grab a towel because drool is pouring out again and his face is distorted again. So I grab my camera and start snapping and instructing him to smile his biggest smile. This lasted for a min maybe two mins, but the numbness goes away according to chase. I ask if he is numb anywhere else and he says no. 

We make it to the appt at 1:10, not with his normal primary care doc. This doc wants to treat him as if he has late stage Lyme disease (LD) without doing any blood work to confirm. Said his facial numbness is Bell's Palsy (BP) and is characteristic of late stage LD. She also prescribed a steroid for the BP. 5 days for steroid and 21 days for antibiotic. 

For reference here is a normal smile

We finish the steroid and continue with antibiotic. Life goes on. Chases older sister Em graduates from high school. Lots of family in town for that. Antibiotic finishes June 20. Fast forward to yesterday Thursday June 23 at 4:30am, and I hear the bedroom door open and pitter/patter of little feet and awake with Chase standing next to me trying to say It's happening again but his speech is slurred and drool is pouring out. So I jump out of bed, grab a towel in bathroom, and try to catch all the drool. I get back bed and tell him to climb in so I can snuggle with him as he gets thru this episode. He tries to climb up but his right arm is weak and he kind of falls back. So I grab him and pull him in bed. I couldn't go back to sleep and knew chad would be up soon for work so I tucked chase in my side of bed and went out to kitchen to get my first of about 6 cups of coffee that I had that day. I'm the Google queen so I immediately went to google. Which is a scary place and I don't recommend. I've self diagnosed myself with every aliment out there. I think there is a condition where you self diagnosis yourself....at any rate.....

I call appt line as soon as it opens and request an appt, this time I get his primary but it's not till 4:30. Chase finally wakes, so I do a head to toe assessment. Asking him if he felt numb in his should, he replies yes. I move down his arm and he rep,it's yes. I ask if he felt numb in his leg, he said just a little. So basically the numbness is now down the whole right side of his body, not just his face. 

Chad takes him to appt, because I had class. Texts me through out the whole appt. Doc is baffled and doesn't have an answer or diagnosis. Wants to consult with the big wigs at Portsmouth Naval Hospital in VA. She said she would post a forum topic to a doctors only forum and get some guidance and get back with us today (Friday). 

So here I sit, anxiously awaiting the phone call. I don't dare let my phone sit on vibrate nor do I allow it to drift more than a foot away. 

Random 2

I have been stalking my doTerra friends for a while and have finally decided to dive into the Essential Oil (EO) world. I have started my collection with the family physician kit and have slowly added an oil or two each month. I was pleasantly surprised that the lavendar and peppermint actually got rid of a headache that was starting with and I used peppermint to bring down a fever troy had. And I started using the melaluca and oregano on these two warts that Troy has on his knee. It started getting smaller after a week of use but then I forgot to put it on a few nights and have since stopped. And repeat application is key to this stuff. Sometimes it calls to reapply every half hour. I am excited to see where these oils take me. I guess I am an oil junkie now. 

In other news.... Troy had his Pinewood Derby with Cub Scouts. He went with a Steve from Minecraft theme. Didnt do so well but he had fun regardless

My sous chef......

 This one making my homemade Valentine's candy. This years request was chocolate pecan turtles. He pulled it off and they were delicious!!  I love this man!!

Em had her first winter guard competition on Valentine's Day. They placed 5th out of 6th in their title. She had fun. 

Out with the old and in with the new.... got a new hair cut for the new year. (disregard the quality of my photo- ive dropped my phone one too many times and I think the camera has taken the brunt of the abuse).  Im pretty sure there was 10 inches cut off. Wish I could donate it to locks of love but they dont accept color treated hair. Which ive had color treated hair since i was 14. But i needed a change and needed to get dead ends off. Decided to go darker too. Once it warms up Ill put in some hilights again.

Before:

 

After:

Todays weather is pretty crappy out so the boys have decided to do puzzles. I dont have the patience for that. 

Christmas 2014

Boy did Christmas come up on me quick this year. I always say at the start of a new year that THIS is going to be the year that I either set aside a little money towards Christmas or start buying early... like in July. But who am I kidding.... neither of those ever pan out in our house. This year though.... I have a plan. I printed off one of those nifty Savings Plan Challenges off of Pinterest and I have it tacked to the wall. I am hoping to stick to it. Sounds pretty easy and simple. So we will see.

2014 Christmas was spent in Pennsylvania this year w/ Chad's side. It was nice to get away. We decided to drive up the coast like we use to when we lived in Va Beach and totally avoided the DC/Baltimore area traffic. It was totally worth the $12.00 toll we had to pay to cross the Chesapeake Bridge/Tunnel. Have I ever mentioned that I am totally afraid of bridges..... Especially LONG bridges...... that are over bodies of water. Like seriously.... they make my heart rate, my palms sweat and if I'm driving across it, my knuckles turn white from having a death grip on the steering wheel. If I'm not driving I usually end up w/ nail marks in my palms from clenching. Like its no joke. I hate bridges.

Anyways..... so yeah.... Christmas in PA.  One would envision some snow and freezing temps. But this year it was actually decent. Temps in the 50's on a few days. Kind of weird though not to see snow or be able to play in it. The coldest was the night we decided to go to Christmas Village w/ the kids. I believe when we arrived it was 34 degrees and by the time we left it was pushing 22 degrees. Our toes were numb. But the kids had a great time. A little crowded so I didn't enjoy it as much. Busy making sure my 4 yo wasn't swooped up w/ another family. We got to visit both sides of Chad's family. Accomplished Troy's wish for the last 12 mos of riding on a real steam engine. Bless his heart... he loves trains even though he is reaching that age where trains are kind of baby-ish. He still enjoys laying on the floor and rolling his train back and forth and watching the wheels go round and round. Ho-Ho (our name for Santa) was good to all of us.

We have quite a busy 2015 ahead of us too. We have 3 weddings on Chad's side that we will be receiving invitations to, one of which Chad will be the best man in. Chad will still be taking classes full time. Trying to push him to finish his degree. He is soooo close. March will be a major life changing month for us though. Chad is up for sea duty orders and he will have to start his look for our next duty station. Here's praying that its East Coast side because the last few months that he has peeked at the list, its been overseas or West Coast. This will be our last summer w/ Chad around. Emily will start her senior year at Havelock HS and Troy will be a big 3rd grader! Im even looking into getting Chase into the Headstart program here. We will get to spend Thanksgiving together but then prepare for Chad to head back to a ship somewhere in the World. Our plan is for me and the kids to stick around in Havelock till Emily graduates June 2016 then off we go to join Chad where ever that may be.

We are still monitoring Chase's bruises and lumps on his spine. I continues w/ the night/nap sweats and now his appetite is slowing. Plus he recently developed a bruise on his abdomen that we don't feel like there was a cause for it. He hadn't fallen to our knowledge. Still has the swollen lymph nodes so we are checking periodically for signs of enlargement. So we pray for healing there as the research has been scary to say the least.

So with that said.....here is to 2015...... Its going to be a great year!!!

XO
The Finogle's

 

 

  

Mini update

Chase's doc appt this week got cancelled and moved to next Tuesday. His previous bruises on his spine a week ago have gone away. But on Friday I noticed two red bruises/marks on his spine and captured a photo incase it turned into the purple bruises we always see. And it's always in the same area. 

I'm sorry for the bad lighting. Drew an arrow to the area. It never did turn purple. 

I still feel the lymph nodes in his neck. I feel one on his collar bone area and I'm going to mention it to the doc on Tuesday. I had a comforting convo with a cousin of Chads who is a PA. She explained a lot after looking at chases blood work and photos I had sent her. She basically said kids are walking Petri dishes and always fighting something causing lymph nodes to be inflamed. She said the bruising could be from him brushing something and since it's already a soft sensitive area it just bruises more easily. But said to definitely keep with the Appts. She said his blood work looked pristine for a 4 yo and saw no indicator for cancer. It was relieving talking to her. I'll post another update on Tuesday. 

Followup appt

Had Chase's followup appt to him taking a round of antibiotics at thanksgiving. Doc still felt all the lymph nodes and now some new ones. One in the front left side of neck, she said measured .8. Then felt his a armpits and felt some in his left side. She consulted with another pediatrician at the clinic and he said the other lymph nodes aren't anything to be too worried about. Could be due to allergies. However the one in his armpit he said we need to keep an eye on. So doc felt that we should just wait and see. We both agree that we dont want to put Chase thru any unnecessary stress of a biopsy yet I cautioned her that we don't want to sit and wait and it really be something like cancer and we have missed an opportunity to catch it early. She understood. So she wants us to come back in spring to recheck unless we notice a change in the size. 

So that's where we stand. At least we have the holidays to distract us from all this crazy. 

Merry Christmas and Happy New Year!!! 2015 is going to be an amazing year! 

A Mother's Intuition

A mother's intuition.... that nagging feeling that something isn't right.

I don't often blog much. Most of the stuff I put on here is pictures of the kids w/ little captions. Im even pretty sure that no one even looks at this blog page. But I have a lot on my mind and Im using this as a dumping ground to get it out.

If anyone knows me they know that I am an analyzer. I will sit and absorb the info you are telling me, store it away in little folders in my brain and when I have the time I will sit down and recall all those folders and start to break apart all the info. Sometimes this is good and more times than not its bad. Sometimes I over analyze things and get myself so worked up. Which is why I am so glad I am married to my husband. He knows this and is able to bring things into perspective. But I think this even has him scratching his head and freaking out a little bit. This will probably be a long blog post so I will try to start from the beginning.

Hindsight is always 20/20.

Back in the late summer early fall,  I noticed a bruise on Chase's back. It was on his spine towards the lower portion of his back. I didn't think too much of it other than maybe he fell and hurt his back. After all boys will be boys and he is my Moose, very clumbsy. So I brushed it off. It kind of lingered for several weeks but eventually went away. Then one night while getting him ready for a shower I noticed a lump in the same spot the bruise was just in. Thought it was strange but again brushed it off. I filed all this information in a folder and stored it away in my brain. Another week or so went by and as Chase was walking by me w/ no shirt on, trying to be like his big brother, I still noticed the lump. I thought it was strange how he started w/ a bruise and now a lump. Isn't it suppose to be just reverse when you injure something. A lump will form and then will develop into a bruise from healing?? So just to put my mind at ease I called the naval clinic and scheduled an apt w/ his new primary doctor. We needed to get in to meet her anyways.

So day of the appt, I point out the lump. I explain there was a bruise there before. She starts feeling around his body and feels a swollen lymph node in the back of the right side of his neck about 1/2 a cm. Feels his armpits, nothing. Feels his groin and feels another swollen lymph node on the right side about the same size. She asks a bunch of questions like has he been sick lately, has he felt tired, etc. Then one question she asked which initially I answered no to, was has he had any night sweats? She orders some blood work to be done and off to the lab we went.

I later recalled that he has had night sweats. Often times I have put him down for a nap and he has woken up w/ a wet head. I brushed it off as him drooling and we have even thought maybe he peed because his shirt would be wet in the back. Upon checking for pee in the bed, there was nothing. My MIL recalls him being a sweaty baby too.

The  lab was a freightning experience for Chase. Very traumatic. The guy missed his vein in the left arm. Moved to the right. Was able to get it for a little bit but then the vein clotted. So he had to move back to the left arm. After all was said and done they have 5 viles of blood to send off. We wouldn't get those back for a week so we scheduled a follow up for a week later.

A couple days later, Dr Cash called saying his blood work looked good and she would see us in a few days to discuss. I was kind of relieved that nothing had shown up on the blood work.

Get to the follow up appt (Thurs Nov 20) and she feels the lymph nodes again. The right one she didn't feel but now feels one on the left side. The right groin one is still there and now there is one on the left groin. While feeling the right groin Chase started to cry because he said it hurt when she pressed on it. She went over the blood work. Tried to explain it to me. Like I said before, I file away all this info in my brain just to go back home and analyze it to pieces. The blood work was testing for Epstein Barr Virus, which after Googling (which by the way..... Google is a very scary place when searching medical stuff) turns out to be the main virus for Mono. There were 2 more virus tests which all came back Negative. So we know he doesn't have Mono. There were a few other blood test to determine if he has some kind of inflammatory thing going on like Rheumatoid Arthritis or Lupus and all that was Negative. (insert Sigh of Relief).  So she whips out this algorithm for something called Lymphadenopathy and says that the next step is to either try a round of antibiotics or get a chest xray. She said our next option would be to send him to a Pediatric Surgeon to  have a biopsy done in Greenville. I told her lets do Xray and Antibiotics. Whats it going to hurt?

So Chase and I walk down to schedule the xray and they said they have an opening now could we stay. I said sure. Xray gets done and we head to Pharmacy to get Antibiotic. The next day she calls w/ results of the xray and they looked normal, no masses showed up. However I failed to ask if it showed any lymph nodes or just the lump on his spine? She said to take the round of antibiotics and after we returned from vacation for Thanksgiving schedule a follow up so she can feel the lymph nodes and go from there.

She had mentioned that his blood work looked good but there were a few things that were a little on the High side but not too far off normal. So what do I do.....I analyze it at home and start to google each result. His HGB, HCT, Platelets, Lymph % and Lymph # were all the High ones. His Neut % was Low. His WBC was on the low side of normal (5.0-15.5) and his was 8.3. His RBC CNT was on the high side of normal (3.4 - 5.3) and his was 4.88. It just doesn't make sense that if he is fighting an infection (reason for lymph nodes to be swollen) shouldn't he be showing some kind of sign: Fever, sore throat, cough, runny nose? Nothing. Looking at him you wouldn't know anything is wrong. So if you rule out all that and we have ruled out Mono, RA, Lupus, etc...... what is the cause of the swollen lymph nodes, bruising, night sweats?  Google seems to indicate 2 things: Leukemia and Lymphoma. This has freaked me out!

We head to GA for Thanksgiving week.  On our last day there I noticed a new bruise on his spine. (See below) I show it to Chad and he seems to recall that Chase fell off this little scoot car in the house. But he wasn't sure where he hit. There was a small bruise on his butt cheek that I think was where he fell and hit. But again neither one of us saw him fall and can not confirm where he landed. (See below - right picture just above his pant line) There is also a huge bruise on the front of his left shin (didn't get a pic of that). Chad said that was probably from him riding Emily's longboard on his knees. We drive home (Monday Dec 1). Tuesday I happen to notice another new bruise on his spine above the one I noticed in GA. Plus there is a new bruise on his right hip/butt cheek.  Chase completes his antibiotics. I felt around his neck for the lymph nodes and while I am no doctor and not sure if I am feeling lymph nodes, I now feel what I think is a lymph node. I lay chase down and feel in his groin and feel what I think are the lymph nodes down there. So in my mind the antiobiotics didn't work. I called to schedule another follow up appt on Tuesday Dec 9.

Left side was Sunday Nov 30 / Right side was Tuesday Dec 2

Wednesday Dec 5 - Knee bruises (not there day before)

Wednesday Dec 5

Wednesday Dec 5 Side hip bruise (was not there the day before or in GA)

 

We will see what comes of it. I of course think the worse and think its connected w/ the early onset of Lymphoma. But time will tell and I have to keep myself busy between now and Tuesday. Because Google really is a scary place when you are doing medical research on your child.

I will try to keep blogging about this till we find an answer. In the mean time I have to pray about my BIL and my dad. Both are under going some medical issues they are trying to get answers to as well. I hope this isn't the "they come in 3's" thing everyone always talks about.