Iowa City-New Neurologist

We just got back from Jackson's Neurology appointment.  His new Neurologist is based out of Iowa City. When we first met her last March, we (Ryan, my parents, and myself) instantly had a connection with Dr. Joshi-we all loved her!  Anyway, she said that she was very impressed with Jackson and his development, that it "excites" her.  She does not need to see him until November or December (we are used to monthly visits with EEG's) for a checkup and MRI....YES!!!  We are trying vitamin B6 (along with Keppra) for his seizures and temperament, but other than that, we left the hospital with smiles:)  Happy days ahead!!!! 

NEGATIVE!!!

After waiting 6 weeks, we received great news today!  Jackson's lab results for Tuberous Sclerosis came back negative!!!  WE are ecstatic!  I am carrying a little less weight on my shoulders.....and it feels amazing!  For those of you that don't know, back in May Jackson's neurologist called me and said that we need to test him for Tuberous Sclerosis-genetic mutation where "tubers" tumors form in all the major organs-a very devastating diagnosis.  I am soooo happy that he does not have this; but after months of research, I am very sad for all the other children (and parents) that do.

For now, before I put him to sleep each night, I kiss Jackson's head where his tumors are located and tell them "to stay small and not to grow" and pray for another wonderful day tomorrow.

I can't wait to post when we have found a medicine that stops his seizures....hopefully soon!

Pebble

You may be wondering why I am posting a pic of this pebble.  Well, the other night Dylan got in trouble for pushing his brother (imagine that) and as I was talking to him, he blew his nose really hard and this pebble appeared at the opening of his nostril.  It was completely lodged in the opening.  I had to squeeze his nose to pop it out.  When it came out, he said to me "that feels good"!  Oh my, he definitely keeps me on my toes!!!!

Famous Quotes from Dylan

"Really mommy"
"STOP, let's think"
"Just give me a minute"
"I don't want you, well.....maybe"
"I need 2 big minutes"
"Why is brother crying"
"Let's go check it out"
"Whoa whoa whoa"
"I not poop my pants"
I think Dylan has been hanging out with his mother too much!

Summerfest

It was nice to get out and enjoy an evening with our friends...good times with great people!

Partners in crime

Ben looks so good with a purse

Grandpa and Grandma Broich

Monkey Joe's

Dylan's party was a success!  It was so good to have our friends and family there to celebrate.  We were exhausted by the end, even Dylan was tired-hard to believe!!

On our way, sooooo excited 

8 pics later, this is the best family pic we could get

The dinosaur pops out of the cake-Dylan was so scared

Blowing out the candles with his friends

"The Crew"

Wanting to blow out the candles too!

Gotta love the fake smile

Love this picture of Jackson and his cousin Natalie

WE SURVIVED!!!!

Swimming

Here are a few pics from the last couple of weeks.

Had to post this pic, look at those curls!

Grandma Neumann with her boys and her grandchildren

The Toilet and Mommy VS. Dylan

Dylan loves his diapers-I am serious.  He could sit in a dirty, soaking wet diaper all day if I let him.  I knew this was going to be a difficult task, and so far he is winning.  I told Dylan that when he turned 3 it was time to get rid of the diapers and start using the toilet.  I have been working on this a whole year with him.  Last summer I actually tried the "3 day" potty training method, which totally blew up in my face-I was crying by the end of the 3rd day.  So far, since Dylan turned 3 on the 23rd of June, he has pooped his pants everyday-sometimes 4 times a day....no joke.  I know that it will click one day but until then, I guess I will be cleaning a lot of underwear!!!

Dr. Palat Saved My Brain!

Today is a very sad day for me.  Dr. Palat-Jackson's Neurologist, is moving to Colorado.  She has been amazing in every way possible.  I am sure at times she thought I was crazy, but she handled me quite well. Dr. Palat called me daily the first month we were home to check on Jackson, took personal calls on weekends, and numerous calls from me throughout the week.  She is very conservative, cautious, and very straight forward....and I love that about her.  Thanks Dr. Palat for everything you have done for Jackson-we will forever be grateful to you!

This is the shirt I made for Dr. Palat.  I took pictures of Jackson wearing it, then framed the shirt and pictures so she could take a little piece of us with her to Colorado.

Dylan's 3rd Birthday!

I can't believe that my baby is 3!  We shared a very special day together-treats for his friends at daycare (donuts and juice), shopping, Chucke Cheese, cake, presents, and a movie-Kung Fu Panda 2. Also, today was the first official day without diapers...SUCCESS, no accidents!  Here are a few pictures from the day.

Dylan picked out his balloon and of course it was a Dinosaur!

Chucke Cheese

This was a tough picture-took 5 minutes to get him to hold up 3 fingers-notice the fake smile

I made this-yes, I know you may be shocked-but it actually turned out!!!

Kung Fu Panda 2

If you look closely, you can see Ben, Erica, and Eric

Glasses

Here they are....doesn't he look handsome!  Of course this is the only picture I have of him in his glasses because he won't keep them on.  If you know anything about farsightedness, he is +3 in one eye and +4 in the other....you would think he would want to wear them so he could see.  Oh well!

Jackson's Story-Part 1

It all started October 14, 2010 when I picked Jackson up from daycare.  It was a normal day for the Broichs-complete chaos!   I walked into Jackson's classroom and saw my perfect little baby boy (7 months) playing on the floor.  I asked how his day was, expecting the response "he had a great day", but instead I got "we saw the strangest thing today...Jackson bobbed his head continuously, so we decided to time it- every 7 seconds his head would drop and lift back up for about 2 minutes".  Puzzled, I asked them if they had ever seen a child do that before (since I had never seen my older son do that, nor another child do that) and they said no.  I left with Jackson to go across the hallway to get Dylan, having a very uneasy feeling.

That night we watched him like a hawk and saw nothing.  My mind was put to rest knowing that it was just some random thing he did that day.  My mind was not put to rest very long....by the next day (Friday the 15th) about 5 in the evening, was when he started to bob his head every 6 seconds for 3 minutes.  My family just sat there in silence and watched-it was the strangest thing.  I got on the Internet right away and typed in head nods/bobs and the results...brain tumors and seizures.  Of course, I started to get really concerned.  Ryan being the eternal optimist of the two of us said "he is a big boy with a big head, his muscles are weak"-ha!

Playing at grandma's on Saturday, October 16th

That weekend he bobbed his head more and more.  By Monday morning October 18th, I was on the phone making an appointment with his pediatrician for Tuesday at 3. Who knew our life would change so quickly???

Tuesday, October 19th will be a day etched in my head forever.  Not because it was the worst day of my life-that was to come later, but that was the day that our "normal" would never be the same.  We would have to learn what our new "normal" was going to be.  After meeting with our pediatrician-showing him the video I got of Jackson that weekend of the head nods, him actually having an episode (that is what we call the head nods) in front of the doctor, and a few calls to the BEST neurologist in town, we were on our way to the hospital.  After we checked into the hospital with my perfect, healthy 7 month old, the tests began.  You know there is something wrong when doctors come in clusters along with nurses to watch your son have an "episode".  That night he had a CAT scan.  It was a long night in the hospital.

First night in the hospital....

First EEG

Wednesday, October 20th- In the morning we were sent up to the 6th floor for an EEG.  After 2 hours of screaming-he had 27 leads glued to his head.  Within a hour of having the leads on-the Neurologist was in our room.  She told us the bad news-Infantile Spasms.  Infantile spasms are spasms of the brain-they leave 60% of children mentally retarded, 30% with some type of autism/aspergers, and 10% walk away fine.  WHAT!?!?!?  How could this be, not our child, our children are healthy, not us, not him!!!  I can say there were many tears shed and many questions not answered.  I felt like I was constantly spinning-the room, nurses, doctors, and questions kept whizzing past me so quickly, I felt dizzy and sick.

Thursday, October 21st- After 24 hours with the leads on, it was finally time to take them off.  We were so excited, because they made him look sick.  We were then off for a MRI.  About 3 hours after the MRI we were told that Jackson had 3 spots on his brain.  They were from a stroke in utero....WHAT... You have got to be kidding me!!!  After those results, we sat down (my parents and Ryan's parents) to hear the plan of attack.....

The Plan (A)- High dosage of Prednisone-60 mg a day to try and stop spasms. Because the dosage was so high, it would wipe out his immune system (a cold could kill him) so,  I had to take a 3 month leave of absence from teaching, Dylan had to be pulled out of daycare, animals had to leave, everything had to be bleached and professionally cleaned, and a nurse came to our house 3 times a week to check his blood pressure along with renting a blood pressure machine because I had to check his blood pressure 3 times a day.  The worst part...we were not supposed to leave the house at all.  For three months, it felt like the movie- Ground Hog Day-the same thing over and over again.  It was extremely depressing.  I can't even go back to that time in my life-it is just too painful.

Had to give Jackson this many syringes, 3 times a day.

2 weeks later he was still having spasms and it was time to start lowering his prednisone and go to Plan B.  I had been dreading Plan B, but knew that was the next best shot we had at stopping these spasms.  We sat in a conference room and signed away his eyes.  The drug that we had to put Jackson on is called Sabril and it was approved in the United Stated in 2009.  It has had great results in stopping Spasms, but causes peripheral blindness in 1 out of 3 babies.  After all the paper work was signed and many tears were shed-our Neurologist faxed the paper work.  The medicine would arrive at our door the next day at noon.

After 2 weeks of Prednisone

Saturday, November 13-NOON-The medicine arrived right on schedule.  I opened the box, mixed he medicine with water, filled 4 syringes, laid Jackson on the floor, inserted the 4 syringes of medicine into his mouth, and sat and cried as I looked into his beautiful blue eyes.  That morning was the last time I ever saw a spasm-THE MEDICINE WORKED!!!

Jackson's Story- Part 2

Unfortunately, his story does not have an ending.  In March, we met with the best brain surgeon in the country.  We found out that the spots on his brain (that we originally thought were from a stroke) are either slow growing tumors or cortical dysplesia (where the cells do not form correctly).  He told us that he will not operate on Jackson's brain unless he absolutely had too because we run the risk of paralyzing the whole right side of his body.  So, every 6 months Jackson will have a MRI to make sure the spots have not grown.

We were camera happy during this 24 hour EEG-Probably because he was not having Spasms!

Just hanging out in his hospital bed

It was a rough night, but we made it!

In his short 15 months of life.....Jackson has had 14 EEG's, visited the hospital more than I can count, been poked and prodded numerous times, seen more speciality doctors than you can count on 2 hands (yep at least 10), experienced extreme weight gain (ha) from the prednisone, high dosages of medicine,  had ear tubes put in, been dropped from a changing table (after a 6 month leave of absence from daycare), and glasses (not from the medicine, he is just extremely farsighted).  He is currently having seizures-Partial Complex Seizures that last 10-20 seconds.  So far the medicine has not stopped the seizures, but we are hopeful that we will find one that works!

June 2011

We are waiting for a couple of blood tests to come back -trying to rule out or find more pieces to the mysterious spots on his brain.

Believe it or not, I have left out so many details to his story. I will tell you one thing, Jackson won't let these things get in his way-he is one determined little boy.