TSC, a Rare disease from a 10 years old’s mind

Just because he can’t talk does not mean that he can’t UNDERSTAND!

People should NOT use the word RETARDED.  It’s MEAN!!!

God gave us Huddie because He wanted us to learn to be better people.

He is the BEST brother I could ever have and I am so glad that GOD gave him to us.

I love him to the moon and back!!!IMG_2885

I couldn’t have a better brother than Hudson because he means the world to me!

Mom: Why would God let a child suffer with seizures and pain?

Devin: I think because he can handle it. I don’t really know the answer to that question.

MOM: Tell me about seizures.

Devin: There are little ones that only last 20 seconds and there are big ones that can last 10-30 minutes. When you have them you loose brain cells. When Hudson has seizures Hudson’s dog Denali barks and lays with Hudson and Hudson lays with Denali. Denali barks to warn the family about seizures.

Mom: What is your favorite thing about Hudson?DSC00451

Devin: I have lots of favorite things, I don’t know I have to many things favorite about Hudson. Ask me another question.

Mom: What is thing that you don’t like most about TSC?

Devin: Having a lot of surgeries. I don’t like to see people have surgery and be away in the hospital.

Dad: What is your biggest fear

Devin: That Hudson would need more surgery.IMG_0232

Devin: I worry that he will get hit by a car while chasing after a ball because he does not know that a car can hurt you.

TSC is rare because a lot of people don’t have it and don’t know what it is.

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Returning to a new normal.

We have been home for two weeks now from Cincinnati Children’s Hospital, where Hudson had almost his entire right temporal lobe removed.  templobe11 Yes, brain surgery at just 4 years old, his second brain surgery no less.  As his mom I have to say it is very surreal.  Kind of like a movie that someone has told me about and I have seen the movie but was not an actress in the movie.  The reality is that we were the actors and actresses of this one.  I can tell you that God has given us peace and comfort through this whole ordeal.

We are so happy with the results of his surgery.  It was a very hard decision to make.  Much more so than the decision to do brain surgery when he was only 3 weeks old.  The decision at birth was easier because it was a no brainer (pun intended) at birth he was having over 200 seizures a day and would have never developed mentally if we had not chosen the surgery.  This time it was more difficult 1) because it was unexpected to have such a big medical decision again so early in his life and 2) because we were accepting of Hudson, who he is and where he is developmentally.  The decision was based on how many seizures he was having and the benefits of the surgery outweighing the risks.  We made sure we received two opinions from two different hospitals and prayed and felt at peace with our decision.  sutures being removed

Negatives:  Drool, Hudson is drooling although now that we have weaned him from one of his medications it does seem to be subsiding, our hope is that it will stop.  Mixing up names, He is getting mama and dada mixed up but mostly calling us both mama.  He is also mixing up Devin his brother and his friend’s name.  They are close he calls Devin bro bro and the friend dough dough. I am encouraged that they are both boys and the same age and we, mama and dada are similar, so I think the mixup will end.  I believe that he is just on overload and needs time to readjust to his new normal.  I feel like for Hudson it is similar to the Claritin commercial where everything is foggy and then suddenly becomes clear.  He is taking in so much more information than ever before and processing everything.  You can practically see the wheels turning in his brain. This of course is a positive.  Blinking, this is new and we are not sure what to make of it.   It could be seizure activity or linked to the fibers that were cut in surgery and his eyesight or it could just be nothing.  We are keeping an eye on it and will discuss it with his neurologist at our next appointment.

Posititves:  Clarity of mind.  More talking.  Stable walking.  Before surgery Hudson was always walking like a drunk person on good days and on bad days you would have to follow him and catch him to keep him safe.  Today he is much more stable and can run down a hall without zig zagging all the way.  Three, 3, yes, only 3 seizures in the last 21 days, we NEVER expected to be able to say that.  He is also on less medication which contributes to the clarity of mind along with the limited seizure activity.  The best thing in my opinion is the unsolicited hugs.  Once we were home I said to Mike “oh my,  he just hugged me!”  Mike said he does that all the time,  “No, this is different” I said.  Hudson is just coming up and hugging everyone all the time big huge hugs.   In the past he would hug but most times only after you asked him to.  I can not put into words how much it means to me to have my son just come to me and give me the most wonderful heartfelt hug.  Hudson has also been more connected to Denali then ever before and keeps laying with him several times a day.  0 0 0

We are so grateful that God answered all the prayers and that Hudson is on the mend.  He has a long road ahead but is such a trooper and tough cookie.  We want to thank everyone for all the support and especially the prayers.  Hudson and I did have a hard time being away from home for six weeks but the gifts, cards, balloons and phone calls meant so much to us.  We are blessed to have such wonderful people in our lives.  Please continue to keep him in your prayers and all our friends that we met at the children’s hospital.

God is faithful and we are grateful.

Thankyou The Scheck Family

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Surgery update, doctors and decisions.

On  Monday the 22.  We spoke with the doctors on Friday and came to a decision.  Then we forgot about it as much as you can and went off to discover and enjoy what Cincinnati had to offer a 4 year old.

Where I am from if one of my close friends has a friend who I have not met then they are a friend of mine. We say for example “if you are a friend of Mike’s then you are a friend of mine”.  Our friend Kevin from Atlanta has friends here in Cincinnati the Westerbecks, they are the kind of new friends that seem like old friends.  They are such a beautiful family   and have taken such wonderful care of us from putting us up to taking us out to the best ribs around and showing Hudson the time of his life. We began at the German festival called “Schutzenfest”, wow talk about great bratts and something called metts a spicy kind of sausage.  They had kiddie rides set up kind of like a fair and thank God there was a train.

Hudson went on the train ride at least a dozen times and most times not getting off and just asking for “more more”.ImageThe next day we decided to go to EnterTRAINment, a train museum.  Boasting the largest model train display in the world.  That was a hit too. Not only are there tons of trains going in a million different directions but there are at least 3 mini train rides.  We even got a backstage tour, they really rolled out the red carpet and took care of us.  Terry at the front desk was a dream and so was John and Scott (I think that was his name).  I highly recommend checking it out if you are in this area.  www.entertrainmentjunction.comImageImage

Sunday we were going to church so that we could have Hudson prayed over but drove around and around looking for the church which was only 2.5 miles from the Ronald McDonald house to no avail.  We ended up at an eatery called Lime and had some delicious steak tacos.  Then we drove to the Newport aquarium which was nice. It has no comparison to the Georgia aquarium or Tennessee for that matter but Hudson does not know the difference and did enjoy himself.  His favorite part was the penguin display, which led me to spend $13.00 in the gift shop on a stuffed penguin that he loves and carries around and calls him Pogo or at least that is what it sounds like.0 0  0You will never guess what was out side the aquarium, yes, another train and Denali could fit on this one.  That evening we met up with the Westerbecks and went to Mongomery Inn Boathouse, scrumptious food and quite the collection of sports memorabilia to take in. They have the chunk of Hollifield’s ear that was bitten off by Mike Tyson.  No JOKE!  Beautiful view of the river as well, we saw many riverboats and the longest and largest barge I have ever seen.

Loving the bubbles

Loving the bubbles

 

Bubble blowing, Lexi and Hudson

Bubble blowing, Lexi and Hudson

Monday we just laid low at the Ronald Mcdonald house and chatted with other families.  We did have an appointment with cardiology at the hospital and they feel that his heart is fine for surgery but do want him to have a halter monitor before we head home after surgery.

At our meeting on Friday the doctors showed us tons of imaging and video of the tests performed and explained that most of Hudson’s seizures were coming from the right temporal lobe.  He is still having some “firing” from the left frontal which is where his first surgery was.   The doctors are not sure if it is firing all on it’s own or is triggered by the seizures originating in the right temporal.  The plan is to remove a huge cluster of tumors called tubers that emcompass over 3/4 of his right temporal lobe.  In the temporal lobe there is something called hippocampus.  It is responsible for future memory especially relating to shapes and music.  The left hippocampus is more important than the right.  The doctors originally planned on doing two surgeries but since they were able to get so much information during testing they want to just do one.  We are very happy about this as it will cut down the risk for infection.  Tomorrow morning at 6 am they are going to go in and remove 3/4 or so of the right temporal lobe, then lay a grid over the hippocampus and see if it is being active for seizure activity if not they will leave it in, if it is they are going to come out of surgery while Hudson waits on the table and talk to us about removing it and then go back and remove it.  They do not think we will notice any difference if it does have to be removed.  RISKS: He will definitely lose some of his vision on the left upper peripheral side, it is called (pie in the sky), other risks are stroke, infection, and brain swelling.  The good news is that they believe this will eliminate 90% of all his seizures !!!   This is huge for him and could really make such a big impact on his quality of life.  We have prayed about it and have decided to go forward with surgery. Please keep him in your prayers.  He is a tough cookie but will be going through so much.  Surgery is Tuesday the 23rd at 6am it will take around 5 hours or so. We will keep you updated.

Today Wednesday the 24, Hudson did wonderful during the surgery and it went as well as expected. The thing with TCS is you expect the unexpected because nothing is consistent.  There was a very large vessel about the size of my pinky that was in the temporal lobe and they were able to work around it and keep it out of the way.  They did have to cut the cluster of tubers in two to be able to get it out.  They laid the grid over all the other areas of the brain and there was no firing.  They were able to leave the hippocampus in and not remove it.  The surgeon said it may even be possible that they did not affect his eyesight but there is no way of knowing until he has an eye exam.  We will keep praying that he has perfect eyesight and it was not affected. Yesterday when they took him down for a Catscan we had a very scary moment when suddenly his O2 levels dropped and kept dropping, people began rushing in and being very busy, bagging him and calling other staff, Mike and I just silently prayed and then his levels came back to normal and they cancelled the call for other staff. Last night and this am were very rough as he was in a lot of pain, very unsettled, and crying.

Enjoying balloons and gifts from friends.

Enjoying balloons and gifts from friends.

 

 

Asleep with daddy.

Asleep with daddy.


The doctors did adjustments and took him off the sedative and off of one of the pain meds then added another. He is resting now sleeping with dad after having some juice.  Thanks for keeping us in your prayers.

People have asked us so I am just putting this on here.  There is a fund for Hudson set up at Wells Fargo and anyone can donate, go to any Wells Fargo and donate to the Hudson Scheck Fund.  Also our address here at the Ronald McDonald House is 350 Erkenbrecher Avenue,  Cincinnati, OH. 45229  Hudson Scheck Room 74

Mike and Wendi Scheck

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Best job EVER!!!

It is 4:20 in the am and I am at Cincinnati Children’s Hospital.  Today is the day that all the doctors meet to discuss Hudson’s test results and come up with a plan of action regarding brain surgery, his second brain surgery in his little 4 year old body.  Since I am having difficulty sleeping I decided to blog. I was going to tell you about all the thoughts racing around in my brain but that may take far to long and open up a floodgate I do not wish to tap quite yet.  Instead you will get to read about my job history.  I have always said “I do not just want to grow up, get married, have kids and that it”.  As a teenager I was attempting to let my parents know that I had bigger and better plans on top of those goals of having a family.  

     I have always loved children and had a heart for them, I “get” them.  I am just a big kid myself, ask my friends, I have often been referred to as “my crazy friend Wendi”. I believe that is because I really do not care what people think if I feel like doing something it is just going to happen. I still will jump on the back of the shopping cart and ride it all the way to the car, dance in the aisle of a store, pretty much aside from being rude and obnioxious anything can happen.  I just love fun. The private Christian school that I graduated from allowed me to be a student teacher the goal of this was to see if that is what I wanted to choose as my career and then go to college for my degree. I HATED it! I loved being with the kids but it was like I was still trapped at school and all I wanted to do was go play with them at recess. I could not wait for break, recess and dismissal. I enjoyed the children but felt their pain of being antsy and wanting out.  You know now that I think about it my parents must have been pretty smooth talkers to get me to stay in school for a whole extra year. 

I was bugging my parents about getting a job and when and where etc. They kept saying pray about it, don’t worry it will happen. I argued back, I must go and find one. God will take care of it they said. I argued and said “someone is not just going to come knock on the door and give me a job”.  Well God certainly has a sense of humor because within the hour our nextdoor neighbor Mr. D’Amico came knocking and said that his friend worked at a local jeweler and needed someone to work.  I was convinced that my parents had set this up, to have him come knock on the door and prove my argument wrong, they both vehemtly denied anything to do with it. So jewelry sales person it was. Then Pizza Hut waitress, camp counselor, sports counsler, life guard (that was a good one), various jobs at a hospital front desk girl, overhead announcer, emergency room triage, office girl at an oncologist, paramedic and yes I have driven an ambulance and once was enough.  Bartender at various places, modeling mostly for print ads, shot girl at a nightclub (best $ I ever made, I am just saying over indulgence in alcholol makes for very poor decision making they handed me their $ and I was happy to take it.  Hooters waitress, that was ok $ too. I had my own nail salon for awhile and did nails. Sold some of my artwork a few times.  Worked at a ski resort and then a golf club waitressing and bar tending. Veterinarian office as front desk and then vet tech. I got sucked into the world of MLM several times over, once a dreamer always a dreamer, still waiting on my millions.  I worked at a physical therapist office at the manager.  Daycare worker with newborns, another vet clinic where I started off as a vet tech but ended up being coaxed into being the manager, I prefer animals but I am good with people.  I am sure I must be forgetting something, as you can see I have done many many different jobs but the common thread is I enjoy being social and working with people. 

After may heartaches years and years of waiting and multiple miscarriages we became parents, this is and has always been my calling I love children especially mine. They are my world! I have been blessed to have a wonderful husband who knows it was best for me to be home with the children so my days of being paid good $ for working were over. I then got paid in kisses, hugs, poopy diapers, messes to clean up, tears to wipe, boo boos to bandage and my world has never been better.  Image

ImageImageOnce Hudson our last child was born, I was given the opportunity to travel and do speaking engagements to educate people on epilepsy, autism, service dogs,  Tuberous Sclerosis Complex, and basically just tell his story. I enjoy this because I can work and get to take Hudson and Denali with me. Then my old modeling career got a boost and with all my baby fat still lingering we did a photo shoot and are in print ads for Sabril. We are also on their website at http://www.sabril.net.  

This past mother’s day when the family asked what I wanted to do, I said go feed the ducks.  My husband asked “what ducks?”.  Any ducks, I said I just want to feed ducks. Growing up on Long Island we lived near Argyle Park and often walked down and fed the ducks, I enjoyed it and have great memories from then.  So my faithful husband found some ducks for us to feed, mind you we drove about 35 minutes to get to them but I was happy and I also though the kids would enjoy this as well. I want to do something that did not cost much and we would remember, I do not think years from now we would remember what place we ate breakfast or what trinket they purchased for me but they probably will remember feeding the ducks every mother’s day. ImageWe then went ice skating in the afternoon with friends and that was a blast too. Image

ImageAfter having and searching for the best and most fun enjoyable job out there, I know it found me when God decided to bless us with our wonderful kiddos. Best job EVER Mommy!Image

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Update, brain surgery and life in general.

Many months have passed since my last post and both big and little events have happened. There were birthdays, parties, baseball, softball, weekend trips, geocaching, injuries both big and small, crazy hectic times and quiet down time. School let out and summer began, swimming, fireworks in the rain etc. In posts to come I will share some of our pictures from these past months. What has been on our minds this entire time is that the doctors in Atlanta suggested brain surgery and quite honestly that sent us into a tailspin. We knew that there would be many medical challenges with Hudson but were not ever thinking he would have two brain surgeries within the first 4 years of life. We wanted to get a second opinion and be sure to have the best care possible for our son.

Hudson, Denali and I are in Cincinnati Ohio at Cincinnati Children’s Hospital. We have been here for 6 days, Hudson is inpatient and having a pre-surgical brain surgery workup. Since my last post about our testing in Atlanta there had been some doctor and hospital changes and as a family we made a decision to come to Ohio to be seen by some of the countries leading specialists in Tuberous Sclerosis Complex (TSC).

Waiting for transport to the hospital from the airport.

Waiting for transport to the hospital from the airport.

I was worried about going to a new hospital so far away from home and not knowing anyone, after all I have made friends at our hospital and I did not think we would feel at home. I am pleasantly surprised, we LOVE this place. The staff is wonderful, happy warm and friendly.  Everyone goes out of their way to make sure you have what you need and some things that you don’t need but make your stay more comfortable.

I was fortunate to have Brooke a friend

Loving Mickey Mouse and Brooke AKA "Kray Kray"

Loving Mickey Mouse and Brooke AKA “Kray Kray”

come and stay with me this first week. I am so grateful that she and her family were willing to sacrifice so that she could be here to help, all the tests are tiresome, stressful and draining. She flew back to Atlanta today so I am solo now until Mike and the kids come up next Thursday when we meet with the doctors to see what their determination of all the test results are and how they think we should proceed.

Hudson has done wonderfully through all of this, he is a champ and for the most part happy and hanging in there. He is so brave and I am constantly in awe of his strength.  Denali has also been a dream, very attentive and as always a hit where ever he goes. It is nice to see him bring a smile to everyone’s face.

So far he has had a MEG, VEEG, MRI, Intra ictal spect scan and will have a ictal spect scan next Tuesday. So we wait, wait for seizures to happen so we can get the data needed to determine what is next. Just ask a kid watching cookies bake, waiting stinks. Please keep our family in your prayers for wisdom and peace on this journey. Thankyou. 20130711_160128 20130711_152419 20130708_123259 20130708_165129 20130709_113634 20130708_110200

 

 

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Leah from the EEG department surprised Hudson and me with this HUGE Mickey Mouse balloon after returning from a test. It  brought tears to my eyes because when someone loves and cares for your child, there are no words. Thank you Leah.

Leah from the EEG department surprised Hudson and me with this HUGE Mickey Mouse balloon after returning from a test. It brought tears to my eyes because when someone loves and cares for your child, there are no words. Thank you Leah.

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Music therapy in the hospital, WOW, He loved it.

Music therapy in the hospital, WOW, He loved it.

 

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“It’s not like it’s BRAIN SURGERY”

I am here at our “second home” Children’s Health Care of Atlanta Hospital.  We came to the ER on Saturday Feb 2nd after posting on a mommy FB page some things that were going on with Hudson and getting parent advice.  Hudson was very unstable and ataxic for over 4 days his cognition seemed the same but I literally had to be his shadow and keep him from crashing into the walls or falling down stairs etc.  This is not entirely new to us because when he has a bad seizure day as I call it he can be that way ranging from a few minutes to several hours but it has never lasted several days.  We (Hudsons’s doctor, Mike and I)  have been concerned for many months now that Hudson’s seizures are not getting better but becoming more frequent and intense even though we have tried multiple medications and multiple combinations of different medicines. The mommy advice that I received was that it is possible he has become toxic from his medicine and should be taken to be checked by a doctor. Wise advice, we took him to the ER where they admitted him and we were scheduled for an MRI the next day. Sunday comes and we are informed that there is not adequate staff for a sedated MRI and it will be done Monday morning. Great, we are worried that a tumor is growing and causing problems. The blood work that came back from the ER was all ok. That being said only 2 of the 5 medications he is on can have levels drawn to see if there are toxic levels in his body.  They were ok.  Then he ran a high fever, great did he pick up a bug or virus while we were here or what, no one knows just something else to complicate the picture. Anyone with a child of special needs or perfectly healthy child knows that sometimes when it rains it pours and well the fever was adding to the mix of unknowns.  Monday the MRI was scheduled for 1:00 pm so no food or water since midnight. My little trooper was doing great although I did have to hide every bit of food or water in the room so he did not see anything.  Or MRI did not happen at 1:00 but 3:30pm keeping him distracted for that long was difficult to say the very least and poor thing was getting grumpy. My stomach was grumbly so I am sure he was starving and not really understanding why his mommy was not feeding him.  He was also scheduled for an EEG so I requested that the leads be put on while he was still sedated. Some awesome nurses had to make it happen but they did and so Hudson woke up with his smurf hat on.  0 0 0 0

Putting on EEG leads is stressing for everyone, the staff who put on the leads do this everyday and are great at it but let’s face it a screaming unhappy child is no fun for anyone. There is marking with a red soft pencil, measuring, placing the many (I should find out just how many one of these days) leads on with stinky glue and then drying the glue with an air hose.  The air hose makes a very loud noise that is perfect for making any child flinch and scream.  Hudson normally does quite well when having this done but if I can avoid some stress with all that he has to endure you had better believe mama bear is going to do what I can.  Thank goodness they were able to do this while he was still sedated.  He was definitely NOT happy about waking up with the “smurf hat” on though. They put all the wires that are attached to the leads together in a ponytail and then through a cotton sock cap and we call this his “smurf hat”.

All the EEG leads.

All the EEG leads.

My big kids think that is what it looks like so the name stuck and when we tell them that is what he is having done they know what we are talking about.  You are then put into a room with a camera in the ceiling and also a microphone  so that they can capture the electric stimulus from the seizure, any audio and visual. The parent must also push a button to mark on the EEG when a seizure begins and keep a paper log what time did it begin, how long did it last, what did it look like, is this

This is what the data looks like and what the video camera captures, see smaller square in Rt. corner that is Hudson on the bed.

This is what the data looks like and what the video camera captures, see smaller square in Rt. corner that is Hudson on the bed.

typical or different from normal etc.  I might add that you must stay with your child at all times now don’t get me wrong I love snuggle time with my baby but a girl’s gotta pee and oh maybe shower after several days.  You can have a nurse come sit with your child so you can use the restroom, but I was fortunate to have a few friends stop by and bring me something other than hospital food and allow me to take a quick shower. Denali also had to pee so a few nurses who fell in love volunteered to walk him for me when I could not. This particular hospital stay was quite different because a friend drove with me to the ER Saturday and stayed over in the hospital room and to be honest since Hudson’s birth I think that is the first time that anyone has stayed with me, it was WONDERFUL just to have the distraction of a friends conversation.

Kaya visiting during testing.

Kaya visiting during testing.

Big sister visiting before EEG had begun.

Big sister visiting before EEG had begun.

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Tuesday doc comes in and we talk about all the seizure we saw and the plan of action.  Well, I was never so thrown off as I was with this conversation. I would not have been more shocked by seeing a lion walk down the street.  He said that we need to see if all the seizures are coming from one place then we should consider brain surgery AGAIN.  Yes, I said again. We already been there done that!!!   I was not prepared for that  and am numb I think actually not sure what to think. So now our ER admission for instability has turned into a surgical evaluation.  I wait until Mike comes to visit to tell him face to face, he is as shocked as I am but tells me that we will get through this we always do.

Today is February 15th. Life happens quickly and well I have been hands on and busy since Hudson being discharged from the hospital. It is 2:00am and Hudson just had a seizure it woke him up and took a bit to settle him back to sleep. He is resting well now. I was supposed to wait ten days to call the dr to see what the plan is for Hudson and what all the test results show. It would be 3 more days to wait for the tenth day and I am not so good at waiting especially to find out if we are cutting my kids head open again . So I called yesterday in hope of finding something out. I did, I found out the EEG has not been read yet and so we wait some more. I was hoping not to go through the entire weekend not knowing but it seems we will. Some people think it is better not to know but I hate the not knowing. If I know then I can face whatever it is we are going to be dealing with and put myself in preparation mode. Both physically, emotionally and making phone calls and gathering data and info. Maybe we will hear on Monday. Mike and I have had a few conversations about the possibility of brain surgery and our thoughts and fears but it is hard to discuss because we are going on little info about what we are dealing with exactly. The EEG will tell us if all the seizures are coming from one tumor to from several. Idealy it would be all from one so that the surgeon can go in and take out that one tumor. Hudson’s right side of his brian has many many tumors or “tubers” far to many to count just adding to the complexity of the situation. It seems to be his right frontal lobe but there is a “hot spot” on the left and that is all we know until we get more of the EEG results. The MRI was stable except they have not measured the SEGA’s which are two tumors in the ventricles of the brain but we are on a drug to shrink those, the drug is working wonders for many people with TSC and for us it is keeping his SEGA’s stable.

Hudson at 3 weeks old just out of brain surgery.

Hudson at 3 weeks old just out of brain surgery.

Some how dealing with brain surgery of a newborn who was seizing constantly seemed to be easier. I can not fully put into words why, but it was an obvious choice. He was always either seizing or sleeping and would never have developed. Now we know Hudson who he is, his smile, his piggy noises he makes to make you laugh, his laugh that lights up a room. His right side of his body is weak from his original brain surgery so I wonder now we are talking about surgery on the right will that make his “good” side weak? Will surgery change who he is mentally, physically, emotionally. The basic question is will it do more good than bad? We as his parents are put into the position of making these hard decisions. It will not be done lightly or without prayer and many consultations.

People often say “It’s not brain surgery!” because they are trying to relay that brain surgery is difficult, complicated and basically unbelievably hard. Since having  a child go through actually brain surgery I find that statement kinda funny because we now come from a place of knowing just how difficult it is on our end anyway, the surgeon’s perspective is a whole other story. We will continue to be the best parents and family we know how to in the meantime. We will E.T.M. as I like to say Enjoy The Moment!!! Which basically means live in the moment, enjoy what you have and cherish everything.

One more thing it has been brought to my attention that sometimes people do not know what to say to someone who is going through a difficult situation no matter what it is a death, sick child, breast cancer, relationship issues whatever it may be and some people say nothing because they are unsure what to say. For Mike and I we both agree that something is better than nothing,” I’m praying”, “we are here if you need anything”, “we are thinking of you”, etc. In times like these you feel so alone and raw that a friend or family member reaching out can mean the world. Well we do not yet know what will be but will keep you posted as we travel through this part of our journey. Thanks for all the love and support.

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Oh the places he’ll go…

I love kittens.

I love kittens.

So Denali LOVES us so much and LOVEs to go everywhere with us.  He has been to the zoo and does not particularly care for the warthogs although he did find the monkeys interesting.  Denali likes the movies especially all the dropped popcorn. He does wonderful when we travel going through the airport on the plane and on the occasional escalator he never complains. He has been on the little train at the mall and on the carosul. He has been mistaken for a stuffed animal at many toy stores, which is very hillarius when someone sees him move and are amazed and started at the same time. Denali going everywhere with the family really opens up the door of conversation to be able to tell people about Hudson’s story.  I am able to then educate people about epilepsy, autism, service dogs and how they detect seizures and what Denali does for Hudson.  Most people have never heard of TSC but do know someone with diabeties, obesity, cancer, seizures, autism or developmental delays which are all connected to TSC.  I do like it when someone who I have connected with says that we give them hope and that they are inspired by us, we have a book of people we pray for and I always add them to our book even if I do not remember their name I may write guy at baseball field or lady at bookstore. So that we can keep them in our family prayers.

Please enjoy these photos of some of the more interesting trips and things Denali has done.  Also please share this blog with family and friends as we are trying to educate others about what service dogs do and how wonderful they are.  Feel free to leave a comment about your favorite Denali picture and place he has been or a suggestion for a future trip for him. Thanks.

Denali on right with brother Tacoma on left.

Denali on right with brother Tacoma on left.

Watching for seizure when Hudson was one.

Watching for seizure when Hudson was one.

On Guard.

On Guard.

No seizures right now.

No seizures right now.

 

Pumpkin patch.

Pumpkin patch.

 

Pumpkin patch.

Pumpkin patch.

 

"Did you really make me do this?" -Denali

“Did you really make me do this?” -Denali

 

Fishing with Mikey.

Fishing with Mikey.

Hiking Stone Mountain, Atlanta, GA.Hiking Stone Mountain, Atlanta, GA.

Corn maze

Corn maze

Baseball Hall of Fame in Cooperstown, NY.

Baseball Hall of Fame in Cooperstown, NY.

Howe Caverns, New York160-200 feet below ground. D, loved the cool.

Howe Caverns, New York 160-200 feet below ground. D, loved the cool.

 

Chilin'

Chilin’

Boat tour in Howe Caverns. First time they ever had a dog ride the boat. Boat tour in Howe Caverns. First time they ever had a dog ride the boat.

Another corn maze.

Another corn maze.

Guarding my "puppy", This was Hudson's first time seeing the ocean.

Guarding my “puppy”, This was Hudson’s first time seeing the ocean.

Beach trip, Beaufort S.C.

Beach trip, Beaufort S.C.

Epilepsy walk and speaking engagement in MN.

Epilepsy walk and speaking engagement in MN.

TSC walk in Washington DC. 2012 We are in the bottom left corner.

TSC walk in Washington DC. 2012 We are in the bottom left corner.

Easter

Easter

Baseball games are a huge part of our lives.

Baseball games are a huge part of our lives.

SAMSUNG

More furry friends.

More furry friends.

Another service dog friend who works for someone with TSC.

Another service dog friend who works for someone with TSC.

Loving the snow in 2011

Loving the snow in 2011

Denali loved the Nutcracker performance.

Denali loved the Nutcracker performance.

Watching the train at the children's hospital.

Watching the train at the children’s hospital.

Watching the train at the children's hospital with Hudson in the stroller to my right.

Watching the train at the children’s hospital with Hudson in the stroller to my right.

 

 

 

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