Grandma Nancy (Guest Post)

I remember the exact moment that I heard that Bridger was having seizures. We were at Hunter’s Seminary Graduation and we got a text message from Jake that said, “We are at your house, we think Bridger is having seizures.” We made it home as soon as possible and found Jake and Cretia desperately trying to contact their family doctor.

After that at least a week had gone by. Bridger had been to Primary Childrens Hospital where tests were done and a diagnosis of Infantile Spasms was given. I had not yet seen him have one of these seizures. Then one afternoon Jake and Bridger were at our house. Bridger was crying and I looked and saw that Lance was holding him, while Jake was timing something. Next I saw Bridger’s little body crunch up and I noticed discomfort in his face, while Jake was timing the seizures and counting the crunches.

I seriously wondered why this was called a seizure, because it looked nothing like the seizures that you see on T.V., or even in real life-when people fall down or shake uncontrollably. I was sure there had been some mistake made in his diagnosis. I thought maybe he had been exposed to some toxic substance that was causing these spasms, or maybe something in his baby formula. I researched all kinds of products from paints, and odor sealants to baby food.  The results were that I didn’t really find out anything that I had not already known.

Jake and Cretia said that the “main objective”, the top priority was to stop the seizures. It began to get very difficult to watch all that Bridger had to go through in order to accomplish this “main objective”.

The medicine regime was out of control. Half of the medicines were simply to counteract the effects of the other half.  Within no time the sweetest baby in the world turned into a prickly porcupine. He didn’t even want to be picked up or held. You had to just set him up in an infant seat and listen to him moan.

One day our good friend Russ Wallis came to the house to check on how everyone was doing. I remember telling him that what Bridger was going through was like something that you only read about in the Bible. When people would bring their suffering loved ones who were blind or lame, even children who were stricken with seizures to the Savior, Jesus Christ to be healed. There was no other option, nothing else could be done….and Jesus would heal them. I said and really felt that way about Bridger. I think Russ thought I had lost my mind.

Since then many of our friends and family, even strangers have joined us in prayer to ask for Gods intervention on Bridgers behalf. We have not seen him miraculously healed, but we have seen miracles. His body is pudgy and round, he still gets mad when you pick him up, he needs a lot of help to even roll over. But when you look in his eyes his spirit says, “I’m here!”  And on a good day he will even talk to you in his own special baby language.

We feel so blessed to be able to have him in our lives. So glad to be able to share in his care and growth. He makes our lives better. There really is nobody just like him.

New Baby!

No, no we're not pregnant again.  Crazy people.  We do have a new baby in the house though!  Bridger ceases to amaze me at this point.  He smiles, giggles, plays with toys, and even likes tummy time again.  It is weird to see him this way.  To me this is not normal.  It's definitely more enjoyable than how it used to be.
Remember when I talked about routines?  As humans we innately have routines.  We thrive on routines.  It throws us in a loop when those routines get messed up.
We had a routine down.  Bridger was sick.  Everything he did was because he was sick.  Any odd movement or jerking was a seizure.  Bridger sleeping all the time was because of his medications.  Bridger NOT sleeping was because of his medication.  Bridger crying ever two hours of the night were because of bad dreams or seizures.  Or both.  There was a point that whenever he started smiling we knew a seizure was close behind.  This was our routine, our daily lives, and how we lived each day.  Things are different now and our routine has changed.  It has been hard to adapt.
You would think it would be easy.  I'm not saying that we aren't just ecstatic with where we are now.  Because we are!  I'd say we almost feel like it is too good to be true.  We have been so on edge (well maybe just I have been on edge).  Now that Bridger is not being overdosed, the seizures have stopped, and the crazy brainwaves are gone, he is acting so weird!  It is driving me crazy!               
    

That about sums up how I'm feeling these days

 He moves around all the time!  Repetitively.  He kicks and wiggles and flails his arms all over the place.  He takes his arms and smacks them down on my or the bed over and over again.  Ah!  Is it a seizure???  He has moments where he'll start screaming his head off and then instantly stop.  Little seizures maybe?  There was one night where he puked up everything he ate and woke up every two hours.  Great now he has seizures and a tape worm in his gut.  He keeps on grabbing onto his ear.  Ugh ear infection?  He won't look at me, he looks at everything else going on like bright colors, music, and of course the fan.  I knew it, his peripheral vision is ruined because of the Vigabatrin.  Oh no he's smiling again!  Here comes a seizure?!  He's sleeping all night again.  Did he go into a coma?  Is he breathing?  You better believe I'm checking on him every hour of the night.  Gah!

I started bringing this up to people and they all looked at me like I was crazy.  Want to know what response I got?  

This is what normal babies do.

These things are normal?  All weird movements and moments of hysterical crying are not signs of total catastrophe inside my child's brain?  What?!  This is not normal for us.  The routine that we were thrown into for 2+ months was not like this.  We are SO backwards!  

Bridger's physical therapist came over yesterday and she was impressed on how well he was doing.  She kept on commenting how he is like a new baby.  I explained to her how confusing it is to have him "normal" again.  She smiled at me then looked at Bridger and said, "you're going to have to teach your mommy all over again."  

I don't know if I'll ever stop worrying about seizures in the back of my head.  We're still not out of the woods yet.  He'll have to be weaned off of his medication eventually and who knows if the seizures will stay away.  They could break through and come back.  When he started getting better and laughing again I commented to Jake that I am afraid to enjoy it.  I'm afraid to get used to this new baby.  I don't want to get attached to his laugh, his smile, and his improvement.  What if it goes away again?  I can't imagine feeling that heart break all over again.

I have a pretty smart husband.  He told me that if it does go wrong again it will hurt regardless.  Why not appreciate and enjoy him?  No matter what the pain will still be there if the seizures come back.  Just enjoy him.

So I have been.  Every smile and every giggle I get from him is a blessing.  One that may or may not be taken away from me again.  Once again the routine has changed and now Bridger has the reigns.  It's been fun so far and I hope it stays that way.  On a final note here's what we wake up to...EVER MORNING at 6am on the dot!  :) 

                                   

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New Appointment

Yesterday was a long day for us.  We spent most of it at Primary.  Bridger and I woke up early and headed in to get another EEG done.  He decided to be difficult today when hooking him up!  It was funny :) he is a strong little boy.  Once he was hooked up he calmed down and went straight to sleep.  What a turkey!  They were really great there and even let us go an extra 15mins just to make sure we got a good EEG session.  Next we hurried over to the library.  I wanted to get as much medical information on Infantile Spasms as I could.  I asked the librarian if she would search up stuff for me in all the books they have while I'm at our next appointment.  She was great. 

Sleepy Boy :)

We rushed on over to the third floor and went to our Ophthalmologist appointment.  If you ever go over there I hope your receptionist is Rick.  He is the nicest guy!  He chatted with me and made me feel right at home.  The eye doc was great too.  They went right to business.  I did feel a little rushed but he explained everything they were doing.  He also typed it all up and gave me a copy of our session.  They dilated his eyes and did little tests with him.  His eyes are doing great still. If you don't remember we go to the Eye Doc because of the vision risks that come with using Vigabatrin.
After this we went back down to the library and read up on all sorts of journal articles and books about Infantile Spasms.  There isn't a whole ton of information but it was enough to confirm everything that I have learned.  I was ready to meet with the Neurologist.
When we met with Dr. Zilenski we also had a social worker, Debbie, who came with us.  It helped to have a mediator with us.  She took great notes and talked with me afterwards.  I'd recommend having a social worker.  We began asking the Doc several questions.  We had both written questions and family members had as well.  He was patient with us, he listened, and explained everything in detail to us.  He even drew us pictures.  However he backed up our Doc that messed up and made the mistake seem minor.  We agreed to disagree.  He felt like everything we had done thus far had not been a waste of time either.
He did show a great amount of concern when we explained his left-sided weakness and that it was coming back again.  He agreed that another MRI should be done soon.  He was also able to take a look at the EEG we had that morning.  He is trained to read those but he wasn't the one reading them today so he couldn't give us a definite answer.  He did say that to him it looked like the hypsarrthmia waves were gone.
To remind everyone the hypsarrthmia waves are the crazy waves going on in Bridger's brain all the time and what defines his seizures as Infantile Spasms.  We were cautiously optimistic to hear this but did not want to get our hopes up.  Jake and I had discussed if the EEG did come back clean we would request a 24hr EEG just to make sure they really are gone.  The Doc didn't see any reason to do it but we insisted it be done.  I'd like it to be done when he gets weened off of the Vigabatrin.  I want to know absolutely sure that they are gone.  Even if they are I can't deny that I won't be paranoid about it for the rest of his Bridger's life.
With concerns towards our old Doc we still wanted a new one regardless of how sorry she was.  We felt more comfortable having someone else see us the rest of the way through.  He wasn't too helpful with this but said he would email the Doc we wanted and see if he'd be willing to work with us.  Hopefully he does.  If not we agreed to see our old Doc as long as she was supervised through out our appointments.  Please new Doc take us!!!
Once this was all said and done we had to go to ANOTHER appointment.  Bridger had an ERG done.  This is where they place a contact in the eye with electrodes hooked up to it.  They then flash lights into the eye to see how it responds.  Normally they like to put kids under for this but the Doc who does this (Dr. Creel) felt confident that he could do it without anesthesia.  He did too!  Bridger was a little ticked off at first but Dr. Creel numbed his eye right up, then stuck the contact in (EW), and did the test.  It seriously took less than 10mins.  It was great, disgusting (I hate eyeballs), but great!  I didn't get a picture of Bridger but this is what it looks like minus the eye patch.  Pretty icky.  Eyeballs.  GROSS.     

Ew.

 

After the ERG we went back and talked to the social worker and she made sure we felt like we were getting the treatment needed.  She also wrote down a list of everything that was said needed to be done and she is going to make sure that it does get done.  We really lucked out.  Get a social worker if you're going to be a frequent flyer at Primary.
Bridger and I finally got to go home.  It was a busy day.  I felt like it went well and we were heard.  I forgot to mention this but we were frustrated with how there is absolutely zero information available about Infantile Spasms and that the Docs never actually sat down and explained to us what it was and how severe it is.  He thought this was a problem too and is going to work on making discharge packets for families to take home with them.  He also wants us to look through the packets they make and let them know if it is helpful information and see if anything is missed.   

The best news is as we were driving home Dr. Zilenski called me and let me know he spoke with the EEG interpreter and she felt the same way as Dr. Zilenski.  Bridger's EEG is hypsarrthmia free as far as we know.  I wish that this was the end of the Infantile Spasm journey but we are still in the middle of the woods.  He could still have breakthrough seizures and they may also come back when we try to wean him off of the Vigabatrin.  We're optimistic and happy but still cautious as we continue this adventure of ours.    
          

Infantile spasms How a daddy sees it. (Well at least how this daddy does)

Infantile spasms

How a daddy sees it.

(Well at least how this daddy does)

          As I stepped out the door to go to drill that weekend it felt pretty much like any other. I knew that it was going to be a long weekend of “do this” and “do that” out in the heat.  Probably not going to sleep much and of course because the 489^th was drilling it was going to rain. I kissed my little boy as a dropped him off at his grandparents and I hit the road.  Nothing was further from my mind as I was driving away that afternoon then the fact that after that weekend our lives would never be the same and that my little boy was in for the fight of his life less than 48 hours from now.

          The next evening I called my wife to see how she and the baby were doing. Of course I was expecting the normal response of, “he is good just playing and not wanting to go to sleep,” so to say that I was surprised when my wife answered the phone with fear in her voice would be an understatement.

          “What’s wrong,” I asked, “I don’t know,” she said. “It’s something with Bridger.” As I felt my heart welling up with fear and anger, knowing that I was far from able to rush to her and my little buddy’s aid I listened as she described to me what she thought were seizures. I stood there shocked at what I was hearing trying to pull from all of my medical training as an EMT and figure out what was going on with my normally happy, healthy little boy, and how I could fix it. I tried to be strong for my wife and reassure her that things would be okay (I had no idea how much of that I would be doing in the coming weeks) as I explained that they did sound like seizures to me but that if she was really worried about them that she should take him to the ER. She surprisingly calmly stated that she would feel better if she waited until the following day just to see what happened. That was the first of many sleepless nights to come worrying about my little boy.

 As we returned to the armory the following afternoon I called my wife to get an update. It was by no means the phone call I wanted to have. I knew things were bad by the way that my wife answered the phone. The playful, loving, familiarity was gone from her voice when she spoke and what was left in its place was fear and hurt. “How is the monster,” I said trying to lighten the mood. “Not good,” was all she said. “How many seizures has he had today?” The words almost seemed to choke me as the thought of what the answer might be kept me from wanting to say them. Twelve was the horrifying answer that I got.

          The next few hours went by in a blur. I left drill with little more than the simple explanation that my boy was seizing and that I needed to go. I made the normally hour and a half trip from Spanish fork to my house in right at an hour. I came through the door of my house to find my wife holding my little boy, the look of fear and disbelief on her face was enough to instill in me the gravity of what we were dealing with. “Hold Bridger,” her words cut me to my core as she placed my now no longer happy little boy into my arms. Crunch! Bridger started having one of his seizures, his whole body convulsed as his head came shooting forward and his legs went up. I watched in fear and helplessness as his little eyes started bumping from side to side like something Daffy Duck’s eyes would do after he gets hit in the head. Crunch! There it was again. Over and over and over again his poor body would try to fold itself in half  for a few seconds then he would relax for a few then start right back up again.

The Absolute helplessness and fear that I felt in my heart at that moment was almost more than I could bear. All I could think to do was keep it together for my wife and try to be strong for her.

For those of you who have read Grandpa Spilker’s post you know how he reacted when we took Bridger down to their house that afternoon to see what he thought.  I’ll let you refer to that for her parents’ take on this. 

That evening after worrying a close family friend of ours who happens to be our doctor. We knew that we were going to be on our way to Primary Children’s Medical Center in the morning.

Bright and early there we were walking into the emergency room of PCMC. After the normal getting checked in we were shown to a room, and were quickly followed by a nurse who started hooking our little baby up to an EEG machine so that they could watch his brain and see exactly what was going on. Well while all of this was going on Bridger was having seizures just like clockwork every two hours. By this time we had freaked out a few nurses and they told us that Bridger was going to have to have a MRI so he couldn’t eat anything  and that we would have to just let him be hungry for pretty much the rest of the day. Well by 11 that morning we had a team of neurologist in the room with us looking at our little boy and the results they had captured on the EEG. Their reaction surprised us. They let us know that they were pretty sure that he had a condition called infantile spasms, but that we had caught it super early so we had a great chance of it being all cleared up in just a few weeks. They wanted to run some more tests but they were sure that they could have our little monster all better in a very short amount of time.

After all of the doctors came and went we were admitted to our room in the hospital so that our baby could try and sleep and we could wait for all of the tests that they had scheduled for us. That was the first time that Cretia and I really had a chance to look at each other and take stock of our situation. We knew what our baby had. We knew that we had a lot more tests that we were going to have to put our little friend through. However despite all of that the doctors told us that they were extremely confident that they could get our little boy better.

That night was the first of many nights that my wife and I would sit together and cry. I held her as I tried to choke back my tears and let her sob and cry for a good long time on that narrow hospital fold out bed. That night was one of the longest that I can remember. Every few hours someone would come in and check on Bridger, ask us how we were doing and if we needed anything and then leave. Cretia and I tried to sleep but it never came, we were both just so worried about our little boy.

The following day was more test and waiting and then they started our Baby on the first dose of steroids that they were so sure would have him all fixed up in just a couple of weeks. It was late when we finally left the hospital and started the long drive home. Our heads filled with more questions than answers our hearts filled with worry and trouble and the most frustrating part was there was nothing that we could do except trust in the doctors, love each other, and pray for our little boy.

Well I have to say as a daddy, things for me couldn’t have gotten much harder. All I wanted to do was take my baby, give him some sort of magic daddy dust, and have him be all better. Take my wife in my arms tell her I love her and have all of her hurt be fixed and things get back to the way that they were before all of this awfulness started happening. But I couldn’t. I could do exactly, well, nothing except watch as my only little boy morphed into some sort of in coherent blob of his former self ( Thanks to the steroids and seizures ) and do my best to comfort my wife as she cried herself to sleep night after night.

For the dads and fathers out there who are going through something similar: All I can tell you is simply stay close to your family. Love your wife with all that you have. Don’t feel like you have to fix everything just let her vent and cry and scream and be there to listen. Along with that don’t feel like she is blaming you for what is happening. When she is mad and frustrated with the world it’s because she feels like her baby is dying. Remember that you are her best friend and that she needs you now more than ever.

Love your kid. Spend as much time with them as you can because that time is precious. Savor the little moments that you get when you know that your baby recognizes you and feels safe in your arms. They are your baby so be there for them love them till you run out of love and then keep loving them some more. They need their daddy just like you needed yours when you were a kid and were sick or hurting. Daddy’s are special people and can make things better in a way that only a daddy can.

Finally, be the big papa bear for you kids. When you and your wife feel like something needs to be done or that there is something really wrong with your baby. You tell the doctors what you want done and you don’t stop until you get what you feel like you need. You and your wife know your baby and you know when there is something wrong or when a treatment is not working. Don’t let them give you the “we need more time” line of crap, the answer is no. Be scary if you need to be and get your baby the help that they need.

You-did-what!?

This week has been an emotional roller coaster for our family.  On Wednesday our Neurologist called us out of the blue.  She asked me to tell her the exact amount of Vigabatrin in each of the little packets that we give Bridger.  I explained to her there is 500mg in each packet.  Sounding a little panicked she told me she'd call back in a few minutes.  When she called back she delivered some awful news.

She had been overdosing Bridger since we started his Vigabatrin treatment.  For 2 1/2 weeks!  This was why his seizures had stopped so quickly.  I was mortified.  The highest dose for his size is only 2 packets a day and we have been giving him 4 since we stared!  She told us to immediately put him down to 2 packets a day.  I did not want to.  He had been doing so well but he had a little seizure and I was so worried that if we lowered him he would definitely have seizures.  It was like she was condemning him to have more.  She would not let us do it because there have not been any studies done on such a high dose.  Obviously they need to do more studies. 
What I was more upset about is that she wanted us to lower him down immediately.  This is when my research pushed through.  I explained to her that I will not be lowering his dose immediately.  He can not have his dose instantly cut in half.  Generally with seizure medications if you taper them down too quickly it will cause them to have even worse seizures.  The Neurologist was upset.

I agreed to lower him but we were upset and frightened.  I began researching results with overdosing on Vigabatrin.  I about passed out. Coma, unconsciousness, and/or drowsiness were described in the majority of cases of vigabatrin overdose. Other less commonly reported symptoms included vertigo, psychosis, apnea or respiratory depression, bradycardia, agitation, irritability, confusion, headache, hypotension, abnormal behavior, increased seizure activity, status epilepticus, and speech disorder.  No wonder he was having such a hard time breathing.  No wonder he was completely out of it.  It all made sense.  Now I was angry.  What if he had gone into a comatose state? 

Jake and I decided it was time to get a new doctor, after we explained to this one exactly how upset we are.  She acted like it was no big deal and accountability needed to be taken.  In fact since we went to the hospital they have never treated this like the emergency that it is.  We proceeded to email our doctor, we felt like that was the most appropriate approach.  This is what we wrote:

"We are deeply disappointed that we were wrongly directed in the Vigabatrin treatment.  The fact that he is a happy little boy again has been a miracle.  Lowering the dose of his treatment due to lack of knowledge or a mistake is heartbreaking.  Accountability needs to been taken for this.  Please do not apologize or state that you understand.  Unfortunately you cannot understand although I appreciate your empathy and sympathy.  Fortunately for you, us, Bridger, and the Neurology staff of PCMC the overdose that we were directed to give had a positive effect instead of a negative (such as coma, unconsciousness, apnea...).  Had this negligence caused our child to be put into a comatose state we would be having a different discussion. 
We will taper him down to 10ml.  Know however that we are willing to use the higher dose because it is working on him.  Perhaps new studies need to be taken into consideration.  Due to this incident we will be seeking second opinions for all treatments conspired for Bridger.  This will not happen again.  Thank you for your time."  

Jake and Cretia Stallings

Can you guess who said which part in this email?  Haha.  Needless to say, after our doctor blamed us for her mistake, she decided to pass our team to another doctor.  We will see how this goes.  Our wonderful Aunt Margret contacted the Child Neurology Foundation.  They were very upset with the treatment we have been receiving.  They are now behind us 100% now and will make sure that Primary treats our son's disease with the haste that a neurological emergency deserves.  We are meeting with our new doctor on Monday and if there are problems I have another doctor on hold for us as well.  We are done messing around with these people.  This is a much more angry blog than I meant to post but I have never felt as belittled and unimportant as I have at Primary.  I hate being THAT parent but unfortunately this is the way it has turn out.  At least things are going to get done whether they do it willingly or not.  Thanks for all the support everyone!!!
  
         

Team Bridger: The Spaz Attacks!

So last night as I was running my mind drifted back to Bridger.  I've been trying desperately to get the word out about him and the disease that he has.  Eventually we want to do a Spaz Attack run but I don't know when I will be able to pull something off like that.  Definitely sooner than later.  Possibly in October?  Infantile Spasms awareness week is in December!  I can't imagine anyone would want to run in that kind of weather.  Anyways as I was running and thinking about this predicament I had a "light-bulb" moment.

Maybe I can't get a race together but I CAN get ready for a large race and run it for him NOW.  I've already done a 5k for him.  Why not do a Half Marathon for him?  Why not do a FULL Marathon for him?  I know that I am capable of doing it.  Heck why not try doing the Half under two hours while we're at it?  Finishing is finishing regardless of the time but if I could do that?  Wow!  I am going to do that.
Here's my roadblock, when Bridger got sick Mommy stopped eating.  By the time it was said and done I had lost over 10lbs.  Which wouldn't be a huge deal if I hadn't already lost the baby fat.  Because of all my weight loss I totally lost any muscle that I had.  You could say I'm as weak as a kitten.  Think this is going to stop me???

HELL NO!

I'm running these races.  I am going to need all the support and encouragement I can get.  Every day that I run I will post it here and on my Facebook.  I am going to have some rough days so cheer me on guys!  Won't you please?  Jake even said he'll do it for Bridger too.  That is saying a lot and pretty special.  Why just daddy and mommy?  Why not you?  Let's run together friends.  Let's run for Team Bridger: The Spaz Attacks!

We will most likely be running The Haunted Half in October.  If not then The Thankful13 in November.  We'll get team shirts, we'll do this for Bridger, and we'll have a blast!  There are plenty of 12-18 week Half Marathon training plans out there.  If you really don't want to run then come and cheer us on as The Spaz Attacks race to the finish for baby Bridger!

Go Team Bridger!

See what you're getting yourself into

The Haunted Half 

Thankful13

Example of a Training Plan

12 week Half Marathon training plan

Early Interventions

When the neurologist told us we should start looking into Early Interventions through our local school system I about died.  Are you kidding me?  Try to get help from Tooele County's School system?  We're doomed.  I searched everywhere for another option.  I called all the pediatrics in Tooele and asked what our other options were.  Know what they said?

Nothing.

I had no desire to put my kid through Tooele County's absolute bull***.  In the past all I had ever seen were children not getting the help they needed and frustrated parents.  I was frustrated enough as it was with my neurologists.  Why put more people on the list?

I did not seem to have any other options though.

There were no private pediatric therapists that I could find in Utah.  So, I finally decided to give them a call.  Just as I expected they put me on a calling list and was told they would get back to me as soon as they could.  Ha.  I'm never going to be hearing from THEM.

I was pleasantly surprised.

Within three days they got back to me and set up an appointment to evaluate him.  It was about a month out though, not that it surprised me, being Tooele County.  The odds of them even showing up were definitely not in my favor.  I figured I might as well set up therapy through Primary Children's even though they are 3-8 months out and cost my husband's left nut.  Whatever, it's for Bridger!  So I set up an appointment with occupational therapy through Primary in Bountiful.

I forgot all about the Early Interventions appointment.

The day before they called me and checked to make sure I would be there.  Dang it I guess I will have to clean my house.  Ugh.  That morning I waited for a couple of Tooele County's hillbilly evaluators to show up.  I had no confidence what-so-ever with them.  To make matters worse Bridger had started the Vigabatrin the week before and his left hand was no longer curled and he was acting all happy.  I had to have a stern talking with him and tell him that he better look sickly when these people show up!

 Stop being happy dammit.

I thought that there would only be one evaluator but there were actually four!  One nurse, one PT, one OT, and one counselor.  They were all very professional.  They even cleaned their hands before they proceeded to do all of their testing.  The PT and the OT took Bridger and played with him and did lots of different playful tests.  Bridger kept on looking me like he was saying "Mom! What are these crazy ladies doing?"  The nurse asked me several  questions and tested Bridger's physical abilities.  I was really worried that Bridger was not going to qualify.

Luckily he did!

We have a PT coming twice a month to work with Bridger and teach me all of the things that I can do to help him reach the milestones that he has missed.  She is really confident in Bridger.  She says that he is so strong and when he is off the medication he will have the strength to bounce back.  It has been really comforting to hear such positive feedback.  When they read to me the goals they had for him it made me so happy.  They are so confident that they can get him to play with his toes, roll over, and play with toys.  I wanted to cry!  It would make thrilled to see him do that.

Today was our first appointment with the PT.  She came to our house and taught us simple things to do with Bridger.  Many people would probably get frustrated with the simplicity of it but you have to remember that you need to build a strong foundation first.  Bridger missed that step because of his seizures and the medication.  So now we get to work on that.  He tolerated it very well.  I can't wait to see the improvements that he'll make.  I can't wait for the next PT visit and to tell her, "look Bridger can do this!"

Ok, ok so I was wrong.  Tooele County's Early Interventions program is actually top notch.  They are kind, understanding, and explain things very well.  We are very fortunate and I am glad I finally swallowed my pride and was proved very, very wrong in this situation.  I highly recommend Tooele County's DDI Vantage Early Interventions Program.  They are AMAZING!
 

Work it!

DDI VANTAGE Early Intervention 575 E 4500 S, #B210, Salt Lake City, UT 84107 (Salt Lake/Granite School Dist., Murray School Dist., Tooele, Duchesne Counties) Program Profile FFY 2011-2012  801-266-3939

  
      

Through Papa's Eyes (A Guest Post, Grandpa's Story)

My Papa wrote me a wonderful letter and he gave me permission to share it.  There are a few pieces I wanted to take out but Papa asked me to keep them in since the stuff I would take out was about me.  Thank you Papa for letting me share! 

Papa's Letter

My Dear Cretia

                Twenty four years ago you finally arrived.  It took mom and I quite some time to figure out how to get you here and the longing anticipation was almost unbearable. But then, there you were and within a twinkling of a moment, that moment when I first held you in my arms and counted your fingers and toes…  1,2,3,4,5,6,7,8,9,10, perfect!…. well, I knew in that moment that life would never be the same.  Suddenly I was the father of an angel.  Sure, everyone thinks that their child is the most precious angel ever sent to earth.  But the thing is, no one else (except mom) had the opportunity to have you in their life like I did, so they couldn’t possibly know what I knew…. that you were truly the most amazing little girl ever.  We connected quickly you and I, and even more quickly you seemed to understand that forever more, even your most minimal of needs would quickly become my most important task.  To say I was wrapped around your little finger would be an understatement.  You were daddy’s little girl, but just as obvious and something you seemed to sense and quickly learn how to manipulate….. was the fact that I was little girl’s daddy.  And ya know, I have always been OK with that!

                For the sake of time, let’s jump forward 23 ½ years or so…. Wait, I must throw in a couple of antidotes. First, it has never ceased to amaze me how someone so active, fun loving, mischievous, and yes even naughty, could so easily morph into this angelic being who deserves quick forgiveness and expects constant benefit of the doubt!  It always seemed so easy to forget whatever it was you had done, and believe me, you done a bunch….. and wrap you in my arms remembering the angel that you truly are.  Something about that “little finger thing” ya got going, I’m sure.  Second, all little children have grand ideas of what they want to be when they grow up.  Common responses are: “The first Woman President of the United States.  A Doctor.  A Nurse.  A Veterinarian,” etc.  But you, you always had far greater goals and aspirations – and you never wavered, it was always the same.  When asked what you wanted to be when you grew up you always, emphatically stated “I wanna be a Mommy!”  You would say “I want to be just like Mom, and have a bunch of kids, and I am going to love them and teach them and……”  “Mommy” was always your dream job.

                So 23 ½ years later, you finally got to begin your life long anticipated career.  Little Bridger was born (and man that wasn’t easy!)!  But finally, this perfect little bundle of joy came rushing into our hearts.  I remember thinking “wow! Parenthood is amazing but being a grandparent has to be about as close as we get to Heaven on earth.”  And to watch you and Jake step into your new role as parents and manage them so admirably, well that’s a whole ‘nother level of parental pride in my book.  You guys are simply amazing.  But you know, it didn’t surprise me.  I’ve always known you would be an awesome mom.  And Bridger?  Well, that perfect little guy suffered no lack of love and attention from the many uncles, aunts, grandparents and friends.  He wanted for nothing and our whole world began with the words “where’s Bridger?”  Talk about an exciting time.  We’ve always been a very close, loving family, but somehow this little dude managed to intensify this love to levels I can only describe as exquisite. True joy!  But then….

                As if it is carved into my mind, I remember the day you handed Bridger to me and with this deep look of concern and fear asked me a question for which I know you already sensed the reply.  “Papa, hold Bridger.  Do you think those muscle spasms are something we need to be concerned about?”  Spasms?  What are you talking about?  Within moments however, I knew.  Bridger suddenly tensed up, bent forward, and whimpered in obvious discomfort.  His eyes quivered back and forth and his little hands clenched into tight little fists.  It only lasted a few seconds and stopped.  But then within moments another began, same bodily reactions, same whimper and discomfort. This went on over and over for about five minutes.  I could hardly bear to witness it.  “No, this is not normal.  We need to get immediate medical attention.  It is something to be very concerned about.”  Little did we know….

                The next several weeks are detailed with raw emotion and perfect clarity in your blog.  I need not repeat the clinical aspects as you have done so quite admirably, and quite frankly, you know them far better than anyone.  But what you may not know are the thoughts and feelings that your Papa experienced.  I’m sure others had similar rides, but I want you to know what I felt, what I experienced, what I witnessed…… if for no other reason than to know that though this has been a lonely, terrifying, helpless, hopeless journey – you’ve never, nor will you ever travel it alone.

                After the initial diagnosis, and the fluffy, completely inadequate description of what to expect (medical folks forget that this is “our” first time), I felt some reassurance that this could all quickly be resolved.  You know of my faith and trust in God.  I had total faith that God would help our little guy get through this quickly and this was just a little detour.  For the first few weeks I just remained in this little oblivious world, not wanting to believe that this was going to be anything but over soon.  But the seizures continued and I watched as my perfect little grandson morphed into this pudgy, sedated, non- responsive little dough-boy.  The steroids puffed him up like a balloon and he started to look like the marshmallow man in that Ghost Busters movie.  No more smiles.  No more giggles.  Hell, no more reaction at all except for the occasional whimper expressing discomfort.  The poor little guy couldn’t even cry.  He just lay there, occasionally moaning.  I began to get frustrated with the slow response to the medications.  The seizures continued and the still less than informative neurologists just kept throwing additional medication at him.  I couldn’t help but feel that if the seizures didn’t kill him, the medication surely would. 

                In desperation one night I finally decided to dig deeper.  If the doctors weren’t going to save my grandson then by damn, I was going to find a cure.  That night I had a rude awakening.  The research threw out words like “catastrophic, mental retardation, possible autism, severe neurological deficit, decreased life span, and if not controlled quickly, possible immediate death.”  What the SWEAR WORD!  I had no idea.  I was devastated, and angry at the doctors for not being more forthcoming with information.  Turns out, this is such an odd disease that there is no known “exact cure” for it.  The doctors were simply trying what had on occasion worked in the past.  They just didn’t know for sure what the correct response was.  None-the-less, I was ticked off.  I came to find out that you already knew all this and I was immediately ashamed of my frequent naïve comments to you, telling you to keep the faith and assuring you that everything was going to be alright.  I felt deep sadness, and pride, as I thought of the many times you just listened to my naivety and instead of setting me straight with the facts, simply let me hold onto my hope.  You protected me.  Even in the midst of your own fear and sadness you protected me.  I was devastated by the thought that my little girl was likely in her most intense time of need, and I did not provide the requisite, objective and supportive response.  I wasn’t there for you like I should have been and that tore me up inside.  That night of research was a sleepless night.  I spent so much of it in conversation with God, and wish I could tell you that I handled that conversation with Christ-like humility, but I didn’t.  I was mad to be honest. 

                I told God that I knew He didn’t do this to Bridger (I just don’t buy off on the concept of God doing such things); but that I also knew He could fix it if He chose to.  I reminded Him that we were talking about Cretia here, our amazing angel of a daughter whose greatest aspiration in life is to be a mommy.  “Did you know God, that she’s now saying that she should never give birth again because the odds are high that future children will suffer the same illness and she is not willing to take that risk?  Did you know that God?”  I asked Him “why, of all His daughters here on earth, did Cretia have to be the one to deal with this?  She’s our angel, God.  No one would provide a happier life for children than her.  Please, just take this burden from her.”  To this point, it hasn’t happened, but I’m still hopeful.  I think I am a little more realistic now though, than I once was. 

                As the illness has continued and I’ve watched your anxiety increase and your weight decrease (you’re getting dreadfully skinny sweetheart. Please eat)….. my frustration multiplied.  I’ve never lost faith, but I’d be lying if I said I didn’t get a little angry and a lot frustrated.  The despair I’ve felt as I’ve watched you, Jake, and Bridger suffer is sometimes overwhelming.  It sucks to realize that there is very little I can do for you.  I can’t just hug you, wipe the tears away, put a Band-Aid and a kiss on this and make it go away.  Papa’s (at least this Papa), are not supposed to be helpless.  When our little ones come to us for help, we are supposed to be able to fix it!  But sweetie, I can’t this time, even though I really, really want to.  I feel like I’ve broken that trust you gave me the very first time I held you in my arms.  I’m bawling my eyes out as I write this. Damn this just really stinks! I am so, so sorry for your pain, Jake’s pain, and sweet Bridger’s suffering. 

                I’ve had a little time to reflect since writing that last little bit and I am a little ashamed of my selfish reactions.  This isn’t about me, after all.  I even feel a little self-serving in just the writing of this letter.  It is somewhat of a gratuitous, cathartic reach at peace and explanation.  I’m hesitating on even giving it to you now.  There is some peace that comes in the expression of things, and perhaps putting it in writing is adequate, without delivery of the actual letter to you.  I don’t know.  I do know that the past week has brought a little more hope.  The new medication that was started 9 days ago has stopped the seizures and the process of titrating the other meds off has begun.  Yesterday Bridger was over to our house while you were at work.  When I got home your little sister came running up to me and excitedly proclaimed that “Bridger is smiling!”  I anxiously ran into the house for I have so longed to see his smiling face, and sure enough! He was smiling.  I even got him to giggle a little bit!  Talk about tender mercies!  This is exactly what I needed and gives me such hope.     

                Regardless of where this windy road takes you my dear daughter, you are not alone.  I’ve no delusion that it’s all just going to go away.  There is much we still do not know, and much that little Bridger has yet to endure, overcome, and live through.  I do strongly believe that all will be well.  As you know, we have experienced many trials as a family, and the definition of “well” is often different than what we might have had in mind.  But I do know without doubt that all will be well.  As a family we will do this thing together.  I wish you could still be in our home regularly as we live together, talk together, worship and pray together.  Very rarely does a conversation exist that doesn’t eventually include discussion of Bridger.  There is never a prayer uttered that does not include you, Jake, and Bridger.  Many of my own prayers have been about nothing but you, Jake and Bridger.  You are deeply loved, and we are here for you…… anytime and all the time.   

                And finally, once again, I am very, very proud of you!  Like I said earlier, I’ve always known you are special.  You have always been my little princess and an angel here on earth.  But watching you gracefully endure this challenge with the love and patience of a Saint, and the protective nature and tenacity of a lioness where necessary, has validated my opinion, and surely secured your place among those most precious and worthy of our Father’s presence.  You continue to amaze me and I love you with all of my heart.  If it had to happen, I’m glad Bridger has you to help him through it.  No one could love him more. 

Papa

Thank you Papa for sharing and letting me share.  It is amazing how deeply tragedy affects us yet brings us all so closely together.  I've definitely got one incredible Papa :) 

Daddy's Girl!