Happy 13th Birthday!

It is hard to imagine - 13 years ago  - I held my sweet warrior in my arms for the first time.

People often ask me "when did you know".  When did I know something was different about Anderson?  In utero?  Later?  How old?  It does not offend me when people ask me questions.  Again, I believe I am suppose to share our journey, share what we have experienced to help others on similar journeys.  No one asks to be a part of the "special needs club".  It is something we are thrown into - and we blaze our trails.  Actually - our kiddos - They are the TRUE trail blazers!

I knew the minute I saw Anderson in the recovery room.  Anderson was my 3rd c-section.  I was still in the operating room and Charlie went with our new, sweet, baby boy to recovery while I finished up (very normal for c-sections for baby to beat mama to recovery room).  I can remember still so specifically the moment they put Anderson in my arms, I looked down at him and my first words were "What is wrong with him?"  (Charlie will tell you - this is a 100% true story - my first words).  The nurse and Charlie assured me NOTHING was wrong - WHY would I say such a thing.  I asked again, "What is wrong with him?"  I got the same response.  In fact, the nurse started rattling off his stats (APGAR, temperature, etc)  I said, "Something is wrong"....... it would be 3 months later he received his first medical diagnosis - TORTICOLLIS.

The past 13 years have been full of surprises - both good and bad.  Regardless of the roller coaster it has been, I could not be prouder of Anderson.  He works so hard every day to do his best and make us happy - mama happy he will ask me.  Every year, I am grateful that I can look back and see how far he has come.  And to think back to when he was 18 months old - did not speak, only cried, not even the sound of laughter would come out of his mouth when he laughed, he did not walk, he did not lift his arms above his head, he could not switch a light switch, turn a page of a book, pick up a cheerio, etc.  And, I look at the 13 year old boy that JUMPS with all his might off the diving board, rides his bike (currently with training wheels), speaks 3 word SENTENCES to me, and loves to play Lego mini-figures..... I am amazed and in awe of him....EVERY.YEAR....EVERY DAY.

I am also in awe of his amazing 3 siblings.  I can NOT imagine growing up in a house where your entire life revolves around your brother.  EVERY.WAKING moment (which starts at 6am when he wakes up) revolves around Anderson - don't say that word out loud because it will trigger a tantrum (pool, Target, etc) - we can't attend the fireworks because Anderson will have a melt down, Anderson has a doctor's appointment, he has therapy, he is in a bad mood, Anderson wants to do this, lock the door or he will escape, we can't, don't, careful.... and YET, these incredible 3 siblings handle it all with patience, love and grace.  They love their brother, they are so proud of him, they love to share him with others and they celebrate him.  What a gift it is to witness this on a daily basis - the love and compassion is undeniable and fills me up even on the hardest day.  God has gifted me with 3 of the best cheerleaders with an incredible amount of maturity and understanding for such little people - it humbles me.  Here is a post that Kaitlyn posted on her Instagram account 5 years ago (Kaitlyn was 11 years old at the time)......

Anderson's birthdays are hard for me.  They are reminders of where he "should be" - 13.  TEENAGER - riding his bike to his friends, playing sports, playing instruments, hanging at the beach by himself....and yet, we are far from there.  It has taken me a long time to reverse my thinking - and instead of being sad where we "should be" - I celebrate where we "are".  It seems that leading up to the day is when I am most anxious.  However, when I woke up this morning, I was elated.  I realized there is so much to celebrate!  This year I celebrate he is off his seizure medication with NO seizures.  I celebrate him connecting dots of his surroundings and consequences to situations.  I celebrate the language.  the language.  the language.  He says to us now "USE MY WORDS".  When he gets mad and frustrated - he tends to scream in frustration.  We have been telling him to use his words and tell us why he is mad.  He is doing this and will tell us - use my words. His doctors and therapists always have told us that his #1 challenge would be language - he will be frustrated....and he is....however, every year his language increases - the number of words and the intelligibility of these words.  With the increase of language - we will eventually see a decrease in frustration - what a win for all of us.  As he woke up this morning he said to me, PARTY!, THIRTEEN!, PRESENTS!!  So much joy and happiness to celebrate!

Anderson had his 2nd birthday party EVER on Sunday, July 7th.  We had a birthday party for him in Orange County, it was 4 months after his brain surgery.  We had a BIG party with our friends and their kiddos - celebrating Anderson and his success following his surgery.  It was wonderful.  It was a party for the adults.  SUNDAY- it was a party for ANDERSON.  His best buddies (8 of them) were able to make it to We Rock the Spectrum.  Meagan, our nanny of 3 years that moved to California, was in town and surprised Anderson as well at the party!  They boys (and Meagan) laughed, smiled, jumped on the trampoline, did the zip line, swings, etc.  They sang Happy Birthday to Anderson.  I have never seen Anderson smile as much as he did on Sunday.  He was in heaven.  It was his 1st birthday party and I think he is ready for his next!  What a wonderful day!!  I am still smiling about that day myself.

This week as I was driving, I heard the song "Wonder" by Natalie Merchant.  I have not heard it in the longest time (months and months).  Growing up, I LOVED to listen to Natalie Merchant.  She was/is one of my favorites.  I think God spoke to me this week and told me to LISTEN - really listen.  As I sang the song - I thought of my boy.  I thought how I have been singing this song since 1995 and I never really thought of the lyrics.  For some reason this week, I really listened to them.  They made me cry..... I think it was God telling me all is gonna be ok.  Here is the song and the lyrics......


https://www.youtube.com/watch?v=6zpYFAzhAZY&list=PL9C03E7E67B494606&index=23

WONDER

From the album Tigerlily
Doctors have come from distant cities just to see me, stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders 
of god’s own creation and as far as they can see they can offer no explanation.
Newspapers ask intimate questions, they want confessions. They reach into my head to steal the glory of my story. They say I must be one of the wonders of god’s own creation and as far as they can see they can offer no explanation.
I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.
People see me; I’m a challenge to your balance. I’m over your heads; how I confound you and astound you to know I must be one of the wonders of god’s own creation, and as far as you can see you can offer me no explanation.
I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as she came to my mother, “know this child will not suffer.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.
Natalie Merchant / Indian Love Bride ©1995

Natalie said the song "... was about a child born with a congenital disease," twins she had known personally.  

This week, after I heard the song, I came home to google the lyrics - could I really be "hearing" what I have been singing all of these years later?  I cried.  Anderson has and continues to "baffle doctors" literally across the country (we have doctors from California to Florida and in between)..... they all say they are "hopeful".  A neurogenetic doctor told me 2 years ago - after the 12+ current medical diagnoses - he does not think we have truly "uncovered" his main diagnosis....none of it "really explains" what is going on with him.  This doctor told me to just keep doing what I Am doing since he is doing so well with the help of his team of doctors.  And, as the songs says, "know this child will be able, with love, with patience and with faith she'll make her way".....  and I still cry typing this.  Anderson teaches all of us love, patience and faith.

To think I have been singing this song since I was 20 years old - and now at age 44 years old - I have the true meaning and it speaks such volumes to me.  My heart tells me God wanted me to hear this song this week - he knew my heart and he knows my worries and he knew I needed to have something..... I opened my heart and listened to that voice that speaks to me.  It spoke to me that early morning when I held Anderson in my arms 13 years ago that told me something was wrong - and I believe I heard WONDER on the radio this week - not by coincidence.  God knew.....he knew just what my heart needed.

I know "this child will be gifted" and he has so much love around him.

HAPPY 13th BIRTHDAY to our WARRIOR - who continues to amaze us - and the TEAM of doctors, therapists and teachers that continue to stand behind him. 

Yesterday

I find writing to be so therapeutic.  I can write down what I am feeling/thinking – it helps me process.  I use to run (before my 3 concussions) and it always felt SO good to pound the pavement.  It felt like my frustrations would hit the ground as hard as I would run.  I miss those days.  Maybe later today I will pop a few Advil and hit the trail.  The headache may be worth the relief I will feel after.

Yesterday was a tough day.  Well, lets face it; the past 12 years have been FULL of tough days.  My closest friends know that there are days of the year that are the hardest for me – Anderson’s birthday and Christmas.  These big “typical” events trigger a grieving process in me.  I work very hard at always finding the glass half full – it is what many of mamas do with special needs children.  It is what gets us up in the morning.  On these big milestone days, it is a reminder of where we “should be” and where we “are not”.  Anderson’s 1-3 birthday is coming and I think you can add that on top of all of this….

The past 6 weeks have not been pretty in our house.  We changed Anderson’s after school routine.  It has not been the best for him or for us.  He misses his after school activity with his peers, he misses the structure, and he misses that routine.  He comes home and is disruptive, angry, frustrated.  He is having behaviors we have never dealt with in the past – and frankly – I did not need anything new and additional.  I have been working with our caseworker to talk to the state about after school options for Anderson – that would provide structure and peer interaction.  The state IS NOT MAKING ANY decisions!!!  I am so frustrated.  It is causing for mass chaos in my house after school and a lot of stress on me.  Our kickass caseworker has been pushing the state workers daily with phone calls and emails and she is not getting answers.  This is where Mama Bear comes in – I have been on the phone and email today pushing for answers.  In addition, I submitted paperwork that will force them to make a decision, but it could be another 30 days.

Yesterday, Anderson was thrown off even more.  He had a half -day because of his school’s graduation.  I had to get him off the bus because our nanny has another job and could not come earlier to get him.  Since he got home early, I had to take him to pick Anna up from school.  He screamed from when he got off the bus at 2:20 until 5:15pm yesterday.  I thought I would LOSE my mind. 

It makes me sad to pick Anna up from school and not be able to talk to her about her day.  A friend asked me to get her daughter from school as well – and the poor friend had to listen to Anderson scream in the car.  I could not “reset” him.  This is what Charlie and I call it when he is melting down and we need to get him to calm down.  Our nanny came and I needed a break because it had been over an hour of screaming at this point.  She was able to coax him, Anna and her friend to go to the beach.  He was “somewhat” happy at the beach.  I got a text from my nanny saying he was losing it again.  He was kicking/throwing sand and hitting my nanny.  I was sick to my stomach.  I jumped in my car – parked at the trail of the beach - literally ran to the beach – and helped my nanny so she did not have to deal with it.  After another hour, I was able to calm him and reset him.  By 5:15, nanny and Anderson were off and doing there “normal” Tuesday schedule…..but the change in routine took Anderson almost 3 hours to calm down.  IT was awful for anyone that was around my house. 

Meanwhile, it was Ryan’s 8^th grade graduation pool and dance party yesterday.  All I wanted to do was be a “typical” mom and help the other moms prepare for these festivities.  Instead, I was home handling my special needs son.  Anderson requires 1:1 attention 24/7.  I believe God is working thru us and 99% of the time I can handle days like yesterday.  But, not yesterday.  I just wanted to be for a minute – a “normal family”.  I wanted to be the parent who can throw their name in the hat and say, YES, I will plan that party.  YES, I can decorate the pool.  YES, I will handle this committee.  I can’t do that – ever.  I never know what “season” we will be in on a month to month basis – a day to day basis.  I am a better “worker bee” – I can tell you the day of (sometimes the week of) if I can do something because I know Anderson’s mood and what is happening at home.  Yesterday I felt like it is just NOT FAIR, I know that sounds terrible, but it is how I felt.  The shitstorm at my house (and the one that has been happening for the past 6 weeks) was too much.  I had to call Charlie to pick Ryan up from his pool party, I had to pay my daughter to take the young girls to the beach to get them out of the house.  These are the things that happen around here that I choose to keep private.  It is the not so pretty side of raising a son with special needs.  But, I am being honest and open.  It sucked!  My nanny and I were both in tears at one point.  And, mama bear hit a wall yesterday. 

I always pictured myself president of the PTA, running committees at the school for the kids, being involved and getting to know other families at school.  However, God had other plans for us.  I manage our house and work on raising 3 “typical” children in a chaotic house.  I work on helping Anderson be as happy as can be.  It is a full time job that is exhausting.  But, I get jealous – jealous I can’t be that Mom that is with the other moms doing “normal” mom things.  So, as a fun day was happening around me yesterday – where I wanted to be a part of the festivities, not only was I home – I was in the midst of a MASSIVE melt down.  It has been happening for weeks and weeks now.  I am tired…. I am really, really tired. 

Today, with the start of a new day, I sent emails and made phone calls following up with the state to find out what the status was on our other options for Anderson.  Still no answers from them!  I came up with a plan on how to tackle some of the behaviors on our end while I wait their answer.  We tried a new medication a few weeks ago and I think it has also contributed to all of the above.  I believe we are working thru not just 1 "trigger", but multiple.  I need to clean up the mess the medication made, I need to get him back in his old routine and I need to stop these new found behaviors he has found consequently from all of the above.  (insert deep, deep sigh)

The love in the texts messages, phone calls, the coffees bought, the hugs, and the chocolate covered strawberries really filled me up today.  A doctor told us years ago that raising a child with special needs would be a process.  He said it would be a process that we would come and go out of - grieving stages of anger, sad, and ok.  Yesterday was a tough day.  I was in an anger and sad place.  I think the desire for me to be around for my other children, ME wanting to be a part of the fun of yesterday and not able - made it that much harder.

Thank you to my sweet friends who have reached out.  I have not had a chance to answer all the texts, I will.  For now, please know that your love meant the world to me and filled me up.  I felt all of the hugs sent.  God has put an amazing village around me and I am so grateful for my village. Mama bear may have hit a wall yesterday, but she is putting the pieces back together today - with the help of an amazing village that I call friends <3

H.O.P.E

It is incredible to me to have so many different comments on my FB feed this morning.  There is excitement, there is sadness, there is relief, there is hatred.  Many are asking, "How do I explain this to my children".  I am not writing this blog post to express my political views and how I feel about the outcome in the early morning hours.  But, as I read posts and watch the news - I come back to one thing that I live every day......HOPE.

To be honest and quite frank, I did not ask for a child with special needs.  I did not "vote" for this.  However, I get up every day and I CHOOSE to have HOPE.  I have hope for my sweet boy, who grows and learns every.single.day.  I work my A$$ off every day - with him on his homework, with his verbal ability,  researching, reading, connecting with doctors, connecting with other moms, connecting with therapists.  When Anderson did not speak at age 5, some naive/closed minded docs told me that he would probably never speak.  I did not listen.....I always had HOPE.  And today, he woke up saying another new word.....and has been for the past 3 years - surprising us all.  Anderson has taught us so many things in the past 10 years.  I could choose to not recognize them or I could choose to celebrate them.  We choose the celebration.  I love my sweet boy and the drive and motivation he has every day...and everything he teaches ME.

Today, I still woke up with HOPE.  I have HOPE that our country will be great.  I know that NO ONE is perfect.  We have all made mistakes.  I had candid and honest conversations with our children this morning, assuring them there are checks and balances, and assuring them the people of this country spoke and choose a president.  I am not changing how I wake up - I still choose HOPE. 

I could wake up every day - overwhelmed, sad, depressed, and angry with all that is on my plate.  This is not how I want to live my life.  Instead, I try to teach my children LOVE, kindness and HOPE.

Please be with me and wake up everyday and choose HOPE for our country. 

** ORIGINALLY I WROTE THIS ON 11/6/16 - I FOUND IT TODAY IN MY DRAFT FOLDER AND I PUBLISHED IT.

New week - new focus

I miss blogging....it is a way for me to write down what my heart and my head are saying to me.  Since joining FB, my blogging days are so scarce.  I tend to put down a few sentences on FB for that day when I do write my book. (BTW - I think it is getting closer....a lot of things have come together for me in the past 6 weeks, that I see the book forming in my mind finally ;).  There has been a lot going on the last week 6 weeks - but keeping some of it for my book and not on FB or blog.  Depending on my memory - Lord, help me.  I better start that book ASAP!  HA!

But, too much happened last week to sum up in just a few sentences on FB for me to remember.  Hence, I am busting out the blog today.

Last week - I had a lot of doctor's appointments for Anderson and Anna.  Consequently, it led to 2 new possible diagnoses for these two babies of ours.  First, I have to say - NOTHING is conclusive....we are "investigating" a few options.  Second, I will be happy to share once we know one way or the other what the conclusion is....I have always said this.  God has given us challenges and we will rise to them and I will share what we have learned and what we do with others.  I believe one of our goals is to share our journey with others to help them.  But, I like to keep them to myself until we know.

I was overwhelmed last week.  I could not think of adding 2 more things to our plate.  I took Anderson on Wednesday to a specialist in Baltimore.  It was heartbreaking to watch his anxiety just in the PARKING lot of the doc's office.  He was screaming, crying and verbally yelling, NO!  He did not want to go into the hospital.  Anderson kept signing "hurt".  I assured him we would just be talking with the doctor and nothing would hurt.  But, as I stood in the parking lot, negotiating and talking to Anderson - my heart was broke.  Broke that a sweet, 10 year old boy has been thru so much that he was scared to get out of the car with me.  Why does this have to be?  It is not fair!  Anderson finally went with me, we navigated the long halls and elevators to the department we needed.  Once we were in the office, Anderson starts yelling, crying and signing hurt again.  This is not just a pediatric office.  So, a room full of adults turn to Anderson and stare.  I am sweating at this point.  I am doing all I can to stop from shaking myself and busting into tears as well.  I sign us in at the desk and we wait.  Thankfully, they call us quickly, and the women at the desk realized what was going on without me speaking a word.  They quickly got us back to a room and to triage to check Anderson in somewhere a bit quieter.

The doc was waiting for us.  We had the 1st appointment of the day.  I had sent her Anderson's 500 page medical binder ahead of time.  This doc is AMAZING, (she is an endo - I had taken Anna to a few weeks ago - loved her and wanted her to see Anderson).  We talked a long time and Anderson played happily in the room.  When the doc told me she concurred with what my heart was saying, I was relieved someone was listening...but nervous because it means more testing for Anderson.  For the past 2 years, Anderson's had some funky labs, funky MRI, funky growth/weight issues.  Our INCREDIBLE/SUPPORTIVE and loving pediatrician concurred with me....but, have not had luck with an endo doc who would have the specialty to consider all of Anderson's medical dx to look at a big, big picture.  Anderson's neurosurgeon suggested a doc for me, but this one was at the University of Chicago (Since that is where the neurosurgeon practices).  I found this doc in Baltimore by chance - and I love her.  She is considering so many pieces of the puzzle - and most importantly - LISTENED.  So, for now, we have more tests and the doc wants to review some more records I had to send to her to see what all of this info says.  We think there will be a 6 hour test at the hospital in Anderson's future.  I should know by the end of the week.

Anna - I do not want to say much about this sweet pea.  Just that I think we might have found answers to another issue we have been seeing for a few years.  I took her to a doc on Thursday, who again, concurred with me and my thoughts.  This doc sent us to another specialist, we saw on Saturday.  Anna has 2 more appointments/evaluations with this specialist over the next few weeks.  I should know by the end of the month.

I sat and cried last week.  How can it be that we have 2 new things popping up.  HOW is it POSSIBLE?  I was kicking myself for scheduling all of these appointments at one time - I know better than that - I do not like when all of it comes raining down at 1 time.  But, on the other hand - now I am on the other side of it and can move forward. 

This week - I am choosing to stay positive and not cry.  This week - I am looking for all the goodness and hope instead.  This is what I have to do - last week was "one hour at a time" - this week is "one day at a time"!

My positives:

• my mommy gut - My mommy gut has been right SO MANY TIMES.   You have to listen to your heart and your head.  If it does not seem right, if something does not add up, you need to stop and listen.  I do not have a medical degree.  I am well aware of this - but, I have been living with medically challenged kids for 10 years.  I am learning trial by fire.  Doctors can not get over what I know and the lingo I can speak...you know why?  I have spent the last 10 years reading/studying.  I have added 2 and 2 together on many, many, many occasions and I have put the pieces together...and I continue to try and do this.  I will never stop.  If I was not making progress - I would stop and do yoga again.  But, for now - I am helping these sweet babies of mine, so I will continue to listen to my mommy gut and not give up!
• angel - I am thankful for the sweet woman in the waiting room at the hospital last week.  She saw me trying to help Anderson stay calm and quiet in the waiting room.  I do not know her.  This woman came up to me, complimented me and how I was handling Anderson.  She said she wanted me to know that she noticed and she told me she could not imagine how hard it is for me and that she thought Anderson was amazing and so was I.  Then, she hugged me.  Well, I was trying not to cry keeping Anderson quiet - when this angel came to me and spoke such kind words and hugged me - I cried.  I could not keep it in anymore.  I thanked her and told her it is exactly what I needed to hear this morning.  Little did this woman know that she refueled my jets to get thru the next few hours of the appointment.
• friends - I am so blessed by the most amazing friends.  One of my loving friends called me on Halloween.  She remembered I told her that even the simplest holidays can be so hard.  Yes, as a special needs parent - even Halloween can be hard.  It meant so much to me she remembered - and she picked up the phone to tell me to have a great night.  It made me cry too.  And my amazing friend that called me before and after Anderson's appointment wanting to listen to every detail of the appointment.  I am grateful that she will sit and just listen....and tell me to take 1 step at a time, to not get overwhelmed.  God has given me some beautiful women in my life that I know have my back no matter what!
• husband - As we celebrated our 17th wedding anniversary this weekend, I remember a promise we made to each other when Anderson was 9 months old and we realized something was not "right" with him - we read that 7 out of 10 special needs families end up in divorce.  We promised each other that night, sitting on our couch in California,  we would be on the other side of that statistic.  Charlie does so many little things and big things that add up to help me be a better me - and so I can help our little ones.  He is so supportive and helpful from the minute he wakes up until the minute he falls asleep.  
• diagnoses - I am stopping and reminding myself this week - I actually do not know ANYTHING conclusive about Anderson or Anna right now.  We are just doing more testing and evalutions on both of them.  And, I am remembering the good news - both things are treatable and workable and would help them.  Although, it is "more" - they are managable and there are actions to fix it.  Very grateful for this perspective as well!

As someone said to me last week - "this is just a blip in time" - seems like so much right now - but you will get on the other side of this <3

September 2nd

What a whirlwind of a day yesterday and the past 30 days.

At the end of July, I took Anderson to the dentist for his regular cleaning.  The dentist found that one of his 6 year old molars came in without any enamel (of course it did!)!  Consequently, the tooth was decaying.  Did I mention this is a permanent tooth??  So, the dentist turned to me and said we have to go to the OR to fix this one.  It will be the only way and we may have to put a crown on it.  The dentist office we go to has 3 dentists, I was seeing Dr. B at the time of this visit.  He is so sweet, but I thought since Dr. D had JUST pulled Anderson's abscessed tooth a few months ago, she knew him better, I thought I would ask if she would take Anderson to the OR.  I made that request and Dr. D agreed she would be happy to be the one to fix his tooth.

When I spoke to Dr. D about the procedure, I told her my "wish list"...a brain MRI while he is under general anesthesia for his dental procedure.  Anderson was really "overdue" for a follow up MRI.  His doctors ideally would have ordered a follow up brain MRI 3-4 years ago, but did not want to "risk" the anesthesia for "just take a look" to be sure all is ok.  In fact, I had one of Anderson's doctors say to me, "If Anderson ever goes into the hospital for a dental procedure, we need to add an MRI to it."  So, I threw out the question to the dentist.

Dr. D happened to be going to the hospital the following day and she said she would ask the anesthesiologist if it would be possible.  That doctor told her, nope not possible.  (REMEMBER SHE IS A DENTIST!)  Dr. D pushed further and asked if it was a flat NO or just a maybe I need to talk to someone else.  This anesthesiologist said to talk to the Chief of anesthesia for the hospital.  So, Dr. D did just that!  She got on the phone, called the Chief and told him Anderson's situation.  The Chief said, it is a risk to transport a patient that is under anesthesia, they do not like to do it, it is a scheduling nightmare bc you have to reserve the MRI suite and the OR and get the timing down perfectly, etc.  However, the Chief said he was willing to look into it if the dentist office gave him a date.

Then, Dr. D calls me.  She said, "Liz, I have a concern.  If Anderson's tooth is so decayed and no enamel on it, we will have to put on a stainless steel crown and I believe this will impact reading any future MRIs."  Did I mention she is a DENTIST and she is thinking of this and fighting for Anderson?  Dr. D told me to email our neurosurgeon and ask him about it.  Long story short, he said...yep, no metal in Anderson's mouth, the permanent tooth will have to come out if that is the case.  Dr. D suggests I call the Children's hospital in DC (they have a dentistry department) and see if they have come across this and if they have an alternative to the stainless steel cap.  I get on the phone, make a few calls...I get a dentist (that has never seen Anderson) to call me, I explain the situation, she tells me she does not believe there is an alternative, but she will ask the head of dentistry at their hospital (did I mention Anderson has NEVER been a patient at this hospital and they are working and trying to find an answer for me?!?!?)  Children's calls me back with bad news...they do not have an alternative, they too would pull the tooth.  Ok, back to Dr. D doing the surgery!

I call Dr. D and give her all the news.  The first thing they would try and do is save the molar and place a filling in it.  But, everyone was unsure if this was a possibility.  We needed plan B.  Plan B quickly became pull the tooth.  Dr. D tells me that now we are in a situation she does not pull permanent teeth.  It is not something she does often and she would feel more comfortable in this situation if we went back to Dr. B, he is more experienced in this area.  We agree and understand.  We pick the date of September 2nd with Dr. B.

I reach out to Anderson's neurosurgeon and ask him what MRIs would he want to see if we can coordinate this and I tell him Anderson's growth and height for the past year.  Last year...we started to worry that Anderson was having some potential issues and they could be related to his Chiari.  I've emailed with his neurosurgeon in Chicago who confirmed our suspicions could be related to Chiari, but we would need an MRI to confirm.  We decided to wait last year and just see what happened this year.  Well...this year, we are still seeing the same issue.  Anderson's growth and weight are out of whack.  The risk that exists is scar tissue from his brain surgery pushing on his pituitary gland causing these issues.  Neuro writes me back and says "this is no longer a nice to have MRI but a NEED to have MRI".  If the hospital will not agree to ONE anesthesia we are at the point we MUST do the MRI, Anderson has to go under 2x.  Ok, I start to worry now!

I call Dr. D and explain to her about the MRI and the concern for it and the "must have".  I offer to call the hospital to work with the Chief on scheduling.  Nope, guess who does it...Dr. D!!  She calls him again, she gives the date, the story and guess what...he calls her back and it is a GO!  We can do the MRIs and the dental procedure on the same day.  They do not like to do this, but given the circumstances they agree 1 general anesthesia for Anderson with a transport is better than 2 separate anesthesias!

HOLY SMOKES!  I am so relieved at this point.  Now, Dr. D says....if you want blood pulled, at the hospital while Anderson is asleep, lets do it.  Get all doctors on board with any labs they want and lets get it done.  WOW!  I LOVE this dentist!!  DID I mention she is NOT doing the surgery, but has yet fought and "won" the MRI on the same day, and now she is worried about getting any blood work pulled that he needs!

Here we go again....Now, I start coordinating Anderson's doctor in California who still consults with us and our rock star pediatrician.  We pull together a list (a day past the deadline the dentist set, and of course Dr. D was fine with it) of labs and we get it submitted to the hospital.  Our pediatrician and her staff has to put up with me this entire time calling, asking questions, needing records, needing labs, etc.  The staff all helped me every time with a smile and do not worry Mrs. Mescher ;).

On Tuesday at 11:00 AM, everything was set.  I had surgery time, I had arrival time to the hospital, pre-op paperwork was completed by our pediatrician and submitted, labs submitted, etc.  Now...I just had to wait.  I was full of worry.

When you have a 15 month old baby with the issues Anderson was having, and a neurologist tells you she wants to order an MRI, but it is 1 in a million chance they will find something....you do not worry about the MRI.  But, you get a phone call 24 hours later telling you they found something and it is spelled C-H-I-A-R-I.  Your life is forever changed.  Fast forward and your baby is 9 years old and you have not had an MRI image taken in 6 years...you can NOT Help but worry and worry and worry what it will say.  I am not sure if Worry even expresses how Charlie and I felt.

Finally, Wednesday arrived.  Everyone at the hospital was "expecting" Anderson...the kiddo with 2 procedures in 2 different parts of the hospital ;)  Once again, everyone knew him!  HA!  The Chief of anesthesia decided to be on the case for Anderson.  He came into the pre-op room yesterday morning, gave us the warmest smile and said, "Well, I got the most interesting call from your dentist.  She explained to me the situation and I decided I was up for an adventure!  And, I called my best nurse and told her the situation and asked her if she wanted to jump on the adventure with me and she said sure, so here we are!"  I am so grateful he decided to say yes and save Anderson another round of anesthesia.

MRI was suppose to be from 8:30-9:30 and dental from 9:30-11.  Apparently a few things went wrong, we are not exactly 100% sure, but it sounds like some scheduling issue (after Anderson was already asleep), and the MRI machine deciding to shut down in the middle of A's MRI!  Of course it did!  Nothing you can do when this happens apparently, but wait the 15 minutes it takes to reboot.  A nurse came to us around 10:30 to let us know he was still in the MRI!  WHAT!  We thought he would have been almost done with surgery at that point.  At 11:10, they came to us and said the dental procedure had just started.  Around 12:15pm, the dentist came and got us.  It was over, they were waking Anderson up!  Poor guy was under for almost 4 hours!  It was double the amount of time expected.

Good news - Dr. B saved Anderson's permanent tooth!!!  The molar has an extremely large filling, but it is saved.  They did dental xrays while they were working on him, found 2 other bad cavities into the nerve of 2 baby teeth...so guess who came to our house last night!  Yes, the tooth fairy made an appearance for 2 teeth that were pulled!  They placed a gel foam into his mouth and a few stitches to make 110% sure they would stop the bleeding ;).

We were able to see Anderson about 20 minutes later.  He was having quite a hard time coming out of anesthesia.  This is very normal for children, and it has been Anderson's MO every time he's had it.  ( I counted yesterday during our down time...this was A's 8th time under anesthesia...for MRIs, or surgeries.  Yep, 8 times in 9 years.  Bless his heart.  That is more than most people see in a lifetime!)  The staff again went above and beyond at the hospital.  They were so understanding that Anderson would feel much better at home with us than in the recovery room.  They quickly discharged us once they saw his oxygen was stable.  Anderson was not too happy at all.  The picture I posted on FB was pre-op, not post op.  You would not have wanted to see him post-op...he was having a very difficult time.

Anderson was a bit challenging yesterday afternoon.  It was like he drank a bottle of tequila when we got home.  He was very unstable and could hardly stand.  As time went on, it obviously got better.  However, he is so accident prone on a good day, that Charlie and I just kept saying, PLEASE LET US NOT END UP BACK IN THE ER TODAY!!  We made it!  Anderson finally went to sleep and he had a typical night.  He woke up happy as could be and very chatty saying all of his "Anderson" words that he says!  We were so relieved this morning.

We received so many phone calls, emails, texts, flowers, cards, and FB messages.  The kindness from friends and family meant so much.  We appreciate all of the prayers.  Please keep them coming as we continue to figure out what is the next steps.

As I posted on FB last night, this truly took a village....A village of doctors and their staff that went above and beyond.  They hugged me when I was in tears and scared of the what the MRI might say, they told me they would pray for all of us, they made phone calls, wrote letters, sent faxes, coordinated so many things and so many people to do what was truly in Anderson's best interest.....but it was certainly out of the realm of "typical"procedure.  I am so grateful for everyone.  And Dr. D for fighting for Anderson like it was her own child.  I showered them all with flowers and cards....and now I need to buy Dr. B a little something since he had to wait 1.5 hours until the MRI was done to get Anderson into the OR.   Dr. B did not blink and eye and understood this was just what needed to happen!

Now....the waiting game.  As you all know, I am not one to sit around.  So, by 4:00pm yesterday, I had the radiology report in my hand and I read it and reread it and reread it.  At this point, I do not want to talk about what it says, bc I am not sure what the doctors will make of it.  I am trying not to worry (HA!), and wait to hear what they say.  I am mailing off the images and report to the neurosurgeon today, confirmed our pediatrician has the report, and I scanned it over to our California doctor.  So, everyone has it.  Just waiting.......and waiting.....I will try and practice patience and try and not worry...Until then....

I will be happy to share what is going on.  I have always said I will share Anderson's story with anyone that will listen.  I just want to make sure the info I give is accurate and we have the plan. Keep you posted!

XOXO 

Happy Birthday Anderson!

Here we are…. July 10, 2015, Anderson’s 9^th Birthday.  Every year, it is hard to explain, but Anderson’s birthday is very very difficult for me.  I usually cry for about 2 weeks before his birthday and 2 weeks after his birthday.  Anderson had a pediatrician who once told me it was “ok”, having a special needs child is a grieving process that will continue the rest of my life.  We will go thru the emotions of grieving over and over again.  I think his birthday is hard because it is a reminder for me of where he is “suppose to be”.  This brings on the sadness….it makes me think of “typical” X year olds (depending on what birthday he is turning.) 

I can CLEARLY remember the month before Anderson’s 5^th birthday.  People use to and still do say “the window” closes at age 5.  Some closed minded doctors and other individuals will tell you that the window of opportunity closes when your child turns 5 and you won’t get any more from them (i.e. speech if they are not speaking, etc.).  I would wake up in the middle of the night and see an imaginary clock, and this clock would tick and tick and tick in my mind.  I would feel my chest tighten with anxiety, what was I going to do as we approached his 5^th birthday.  I was putting myself in panic attacks in the middle of the night.  I would cry and cry at the sight of other children close to Anderson’s age.  Then, Anderson’s 5^th birthday came and went….he was still Anderson.  We still pushed forward as we had the other years……Anderson still made progress.  WELL, little did I know that he would PROVE all of those people wrong.  THE WINDOW NEVER CLOSES, NEVER GIVE UP HOPE!  Anderson did not speak his first true, meaningful and repeatable SOUND until he was  7 years old…..just 2 years ago.  Today, we are up to well over 20 words and other people understand him.  Now, it makes those nights 4 years ago seem so silly…..I just need to trust that God has this under control as he has all of these years.

This birthday….It was different.  I only cried today, not the weeks leading up to today.   I cried a little because I was sad, but more because I am happy….happy tears!

Anderson started hippo therapy today.   Hippo therapy is when a patient rides a horse and receives therapy.  Anderson is doing speech therapy while riding a horse.  There is a 6-month wait list for the facility that does this type of therapy, they called me after only 2 months on the list and asked if we were available on Fridays this summer.  Anderson has summer school Mon-Thursday, Friday off!  So, I said yes, we would love to start on Fridays.  Then, they asked…could you come on July 10^th for your first visit?  OH MY WORD!!  OF COURSE we can!  That is Anderson’s birthday.  So, we went to his therapy and it was incredible.  I sat there with tears in my eyes and my throat tight.  I was so happy to see Anderson so happy.  He did not stop “talking” his talk and saying words that the therapist (who has never met him) understood!!  I have truly never seen Anderson so happy for an entire hour.  He did not stop smiling.  IT made my heart melt as I watched him.  He did not stop signing horse all day today.  What a gift!  This is yet another example of God watching over us and giving us the winks that we need that he is standing beside us on this journey. 

 Today, I was not as sad as I also reflected on all Anderson has accomplished.  Every year for the past 3 years has been better.  There are no words I can say to express how this feels, but it is a gift to me, but more importantly to Anderson, it is priceless!  He is gaining independence and he is less frustrated with his increased communication. 

I pray that each of his birthdays become easier and easier and my tears continue for happy memories, not grieving ones….. XOXO <3

Love and Listen

It has been too too long since I wrote on this blog.  I keep saying I will pick it back up again, but FB has been so easy for me to document and I "think" I will remember later when I write that book Charlie wants me to write ;)  However, the truth is...I forget.  I forget the details, I forget the feelings, I forget.  So....here is hoping I get back on this blog train!

I had to blog this so I would not forget the details of what has happened the past 12 days.  The MANY "winks" I have received from God and his many angels.  It has been very powerful and why I am sitting down to write this.

Grandpa (aka Popo) and Grandma were very near and dear to many.  They had 6 children, 16 grandchildren and 18 great-grandchildren.  Popo and Grandma had no "in-laws".  You were their child....even by marriage.  I never knew what an "in-law" was because they loved each of their children the same.  Popo would "count" all of his grandchildren including the "in-laws" in his grandchild count.....by his count, he would have 43 grand and great grandchildren (not including Kathryn's bunch...including Kathryn's crew it was in the 60s I believe!)

Grandma died 15.5 years ago and was not on this earth to see her great grandchildren, but we all know she is smiling down on each one of them.  Sweet sweet grandma should have died nearly 3 times between breast cancer (was given 6 months to live and lived over 20+ years later), triple by pass heart surgery (given 20 minutes to live on the table and lived 12 years later), and bone cancer (they said they could not remove the tumor on her spine b/c her heart wasn't strong enough to live thru surgery, she said she didn't care....and she lived years after that as well).  Grandma would joke and say "God is not ready for me yet".

 (Grandkids)

 (Popo and Grandma)

Grandma knew when she passed, Popo could not live on his own.  You would have to know him to understand, but when you are married over 50 years to someone and have been taken care of......you just don't know how to live on your own after the other passes.  Grandma would joke and say, "When will you remarry after I die?"  Popo would say, "Depends on what day of the week you die!" ;)  Popo was always the one saying something witty, funny, and sometimes inappropriate!

After Grandma passed away 15.5 years ago, Popo did remarry.  He married Grandma Kathyrn.  She was a kind, loving, sweet sweet woman.  I am so happy Popo found Kathryn to share 14 years together.  Sadly, Popo lost Kathryn as well last year.  Now.......he had 2 angels in heaven watching over him!

(Big Popo and Kathryn, Mima Sue and Popo Jim...Anna asleep in Big Popo's arms)

There are countless stories and things I could share, but I want to remember the past 12 days.

Popo fell November 4th and broke his hip....never good news when you are 89.5 years old.  They did hip replacement surgery on November 5th.  There were complications during surgery and he was not well immediately following.  Charlie and I were in Antigua for our anniversary.  It was so hard to relax since Mom was at our house watching our little ones and Popo in ICU.....it was not one of our most restful get aways.

Grandpa was "up" and "down" on how well he was doing following surgery and us returning from the Caribbean.  I was not sure if I should go see him or not.  No one knew "how much" time we had left with him.  It changed by the day and some days by the hour.  A friend said to me, "Liz, don't you want to go and kiss his face one last time while he is on this earth?"  This was such a powerful statement.  YES, I did want to kiss his face one last time, even if he "didn't know", I knew he would "know".

It was now November 17th and Charlie was out of town for the next 4 days.  But, his trip was shortened and it would only be 3 days, he would be home Wednesday night.  I did some searching...and I found a flight out on Thursday morning (November 20th) and home Friday night.  It was just $98 roundtrip.  BOOKED!!

On Wednesday, November 19th, I get a call from my Mom about 3:00 pm.  Popo was rushed to the hospital, it was not looking good, my aunt did not know if he would make it to the hospital.  I was so upset.  I was leaving in 12 hours to see him, and I was maybe going to be too late.  I prayed to Grandma.  Grandma, I want to see him, I want to see him and kiss him 1 more time.  Later that afternoon, I got a text from Mom....Popo was alert and hungry ;) !!  Maybe I was going to get to see him....Thank you Grandma!

Thursday morning I left VERY early.  I got to the hospital in Cincinnati about 9:30am.  Popo knew who I was when I saw him.  I looked him directly in his eyes, I told him "I LOVE YOU!"  He locked my gaze and said, "I LOVE YOU baby!"  I kissed him and told him how happy I was to see him.  I fed him breakfast and I talked and talked to him ( I am sure it is hard for you to believe, but yes, I just kept talking to him and showing him pictures on my phone).  When he was tired, I would hold his hand while he slept.  He was the most calm when someone would hold his hand.  I am so grateful for these moments, quiet time, with my Popo, holding his hand, a chance for me to care for him and comfort him as he did for me the last 39 years.  I am eternally grateful to my sweet friend who asked me, "Don't you want to kiss his face one last time?"  At one point, I looked at him, and he smiled right at me and again, locked my gaze....I held his hand.

I told Charlie before I left, I wanted to hear Grandpa say "ELIZABETH", in just the way he can say my name.  I can't quite imitate it.  My hope came true, he called my name out 2 times while I was there.  It filled my heart to hear him say my name.

I left to visit one of my teachers from high school, Mrs. Herring, and see an old friend that works at my high school.  Mrs. Herring was one of my favorite teachers and has been so good about keeping in touch with me and my family!  As we met on Thursday, Mrs. Herring told me she was teaching the seniors about LOVE, we caught up on our families and the changes at the high school.  I was fortunate to spend a some time with Mrs. Herring and catch up in person.  When I left, I could not help myself but think about the lesson she is working on with her students.  LOVE.  My grandparents....that is all they knew how to do....LOVE.  They loved so many and so many loved them.  Married 50 years to each other, and Grandpa married another 14 years to Kathryn.  LOVE is giving, LOVE is receiving, LOVE is forgiving, LOVE is kind, LOVE is gentle.  Popo loved to love.  I left my high school, drove to the hospital thinking....yep, one word that would sum up my Popo is LOVE.

When I got to the hospital Thursday afternoon, he was not well.  He was in a lot of pain.  I asked him if he wanted something for his pain, he said Yes.  They gave him some meds, and he slept the rest of the afternoon/evening I was there.  At this time, Popo was sharing a room with another man in the hospital (Gpa was later moved to a private room).  The nice gentleman was headed out for surgery.  My aunt thanked  him for being so kind and understanding the past 24 hours.  The man was very sweet.  He turned to me and said, " And you, You are a very special granddaughter."  I could not look at him, I could not speak.  I had no words, just tears.  Later...the words came to me...."But, he is a very special grandfather!"

My aunt and uncles were at the hospital and were meeting with more doctors that evening.  I left to see my BFF from grade school, Angie.  I was spending the night at her house.  I called my Mom, my Dad, my sister and Charlie that evening and told them we did not have much time left with Popo.  Little did I know it was going to be less than 24 hours....

The next morning, I went back to the hospital at the same time, about 9:30AM.  I knew when I saw Popo, this was it.  I have never been around someone who was dying, but this is what I thought it would look like.  I held his hand, and hugged him as much as I could while the doctors got him comfortable.  Angie had told me that she wanted to take me to lunch, I had to eat and she would pick me up.  I took her up on the offer, as my Aunt would be at the hospital, but I wanted to come back at 1:00pm.  There was a "family" meeting scheduled with what the next steps for him would be.  I did not want to attend the meeting, I simply wanted someone in the room with Popo while his children sat in the other room making difficult decisions on what his future held.  I did not want him to be alone.  Angie brought me back, my aunt and uncles went to the difficult meeting.

As I held Popo's hand, I told him it was ok to go.  I prayed to Grandma and Kathryn to take him home, he needed to be with them.  I took my Ipad and googled prayers for the dying.   The prayers pulled up happened to be to St. Joseph (my Popo's middle name).  I held his hand and prayed.  I felt him getting colder.  I was concerned.  Receiving the Last Rites would be very important to Grandpa.  I know this was part of the "family meeting".  I was then praying....don't you die on my watch, not on my watch ;)  I saw the hospice doctor in the hallway, I asked her how much longer would the meeting be?  She told me they still had to sign papers, etc.  I explained to her my concern that Popo continued to grow colder.  The doctor felt him, and said I will be right back.  My aunt and uncles then walked into the room with the priest following shortly behind.  I stayed for the Last Rites, and said my final goodbye to my Popo.  I kissed him, told him I loved him and thanks for being the best grandpa.  I was invited to stay by my aunt and uncles, but I really felt this was their time, their father, their final moments with him.  My heart was full, I saw him, I loved on him and it was their time.  And little did I know....I had another mission that I was about to go on.......

I saw the hospice doctor in the hall as I left the hospital.   I asked how much longer?  She told me it would be today, but several more hours.  It was approximately 1:45pm at this point.

I left the hospital in tears.  In fact, I rode up and down in the elevator not thinking clearly and not knowing quite how to get back to my car.  When I got to my car, I called Angie.  After we had lunch, she told me, "I will be across the street running errands if you need me."  Well, I didn't know where to go or who to call.  I called Angie sobbing, only the way you can call your BFF of 26 years.  Angie told me to meet her at the Starbucks at the mall, we would sit, talk, and have a cup of coffee.  I drove over to the mall, started to get out of the car when something said to me, "GO TO GRANDMA's GRAVE".  WHAT?  I heard it again.  So, I get back into my car and call Angie.  I tell her I can't meet her, I have to go to my Grandma.  Angie was confused but supportive, she told me to do what I needed to do.  Angie helped me figure out the best way to get to the cemetery.  I drove to the cemetery.

I pulled up, knew exactly where Grandma was in the mausoleum.  I got out of the car, and went to Grandma.  I prayed to her.  Take him, please, please take him home.  My grandparents friends are buried under my Grandma, I prayed to them.  I prayed to Kathryn.  Take Popo home.  I sat down on the bench, I prayed.  I pulled out the phone and I prayed.  I looked up at the mausoleum from the bench and saw the most beautiful picture.  The sun was shining so brillantly on the granite.  I stopped and took a picture.

Grandma is down 1 row and to the left of the sun.  As I sat and admired this site...I heard something again, "Get flowers to welcome him home".  I remember thinking, what.  Then, I heard it again, "Get flowers to welcome him home."

I listened.  It has only been 30 minutes since I left the hospital.  I left the mausoleum and went to Kroger.  My phone rang 1 time, it was my Mom.  I missed the call.  But, it only rang 1 time.  I tried to call her back, and it went straight to voicemail, I thought she accidentally dialed me.  I wondered aimlessly around the Kroger floral department and finally left.  I went to the flower store across the street.  I left my sunglasses on to hide my sobs and told the woman I need flowers for a vase at the mausoleum.  I was not sure how big, but could she help me cut some flowers?  The woman saw my sadness, I could tell.  She worked quickly and quietly, checking in with me periodically.  All I could muster was usually a head nod, OK.  I paid for the flowers and thanked the woman for helping me.

When I got in the car, I saw a missed call from Charlie.  Quickly, I dialed Charlie back.  I told him about the Last Rites, I told him there was not much time left.  He told me, it already happened, Popo already passed.  WHAT?  HOW COULD THIS BE?  The doctor told me hours, it had only been 30 minutes since I left the hospital?!?  I called my Mom.  She told me he passed about 2:15/2:20.  I went back to my phone....and saw the time stamp....

I took that photo at 2:20!  I could not believe it! Grandma took him home!

I went back to the cemetery, my heart in a million pieces.  I placed the flowers in the vase and was moved to tears again.  The sun, was shining DIRECTLY on PRUS....my grandparents headstone.  It was God's light shining on my Popo <3....welcoming him HOME.  A warm sense of peace washed over me.......Popo was HOME!

Grandma and Kathryn answered our prayers and took him home.  I felt peace, calm and comfort knowing they were waiting for him.  I am so confident that God was there with him.  I felt it.  Why would I have left the parking lot where I was going to meet Angie, but instead went to Grandma?  Why would I have taken that first picture, why would I have gone to get the flowers, why would the sun be shining directly on their headstone?  I knew, God and Grandma were talking to me, I LISTENED.

I was heartbroken, as were many, many other people.  Word spread very quickly of his passing.  I had a FB message within the hour from a family friend that I have known since I can remember and have not seen in many many years....I have known this sweet friend maybe since I was 5 years old?  She sent me the sweetest message less than an hour after Popo passed and it was affirmation at how many people Grandpa touched in his 89 years of life.  My Popo may be not with us on earth, but he will live forever in our hearts and thru the legacy that He and Grandma left behind.....

Yesterday while I was out on my run, this older man (75+) passed me riding his bike.  He was riding slowly, wearing shorts, with his white tube socks pulled all the way up.  It made me smile.  That was Popo when he was riding his bike around town.  As I was finishing up my run, I was running out of energy.  Out of the 500 songs on my playlist...guess what song started playing, "Kind and Generous" by Natalie Merchant.  Yes, the song my Popo and I danced to at our wedding.  It was just what I needed to finish up my long run yesterday....more "winks" from Popo and God.

Grateful for my sweet friend that asked me if I wanted to kiss my Popo 1 more time, grateful Charlie's trip was shorter than expected, grateful I bought my $98 ticket, grateful Popo did not die on Wednesday, grateful he knew me on Thursday, grateful I LISTENED, grateful I could hold his hand, love and comfort him, grateful to have felt God's peace and presence, grateful for the LOVE of my grandparents the past 39 years here on earth and their continued LOVE from above today.

I learned so much during these past 12 days.  Most of all I learned...LOVE.  That is one of the many legacies left behind by my Grandparents.  LOVE.  And I learned to LISTEN.  Sometimes life gets so busy we do not stop to LISTEN for these "winks" or voices from God.  Take the time to LISTEN and LOVE! <3

Nov 28, 2007 - who knew

It was 4 years ago today, our world came shattering down around us. Life as we knew it was NEVER going to be the same....we just weren't sure to what extent!!

Today, 4 years ago as I walked out of CHOC I got that dreaded voicemail from Anderson's neurologist I needed to call her right away. I remember where I was standing, I remember when she told me and the world around me started spinning. I still remember asking her 3 times how to spell CHIARI 1. I remember the dr telling me not to google it (yea, right, the 1st thing i did was google!!) It was a hard hard day.

All day today, I was OFF, I felt funny. I told my dear friend Kristen today, something is OFF with me today and I can't put my finger on it. Well, tonight I was complelled to pickup my blog and start writing. I wrote a post and was reading back on a few old ones.....then I found the date...NOV 28, 2007. I realized that was TODAY. I can't help but wonder if I remembered deep down and if that is why today was such a hard day.

I digress...but, Kaitlyn was due Oct 29, and was born Nov 10. STILL this year, on Oct 29th, I feel like I have something to do, that it is an important date...in fact it is important. Oct 29th was the due date of our first born baby!!!

As OCt 29th sticks in my mind still, I wonder if Nov 28th will too....as many people remember the date of a loved one passing away, or a birthdate, etc. I wonder if I will ever get over that nagging feeling about today.

Our lives forever changed today, with answers to our little man. Who knew that 4 years later, Anderson would have 3 additional medical diagnoses. Who knew what life would look like for Anderson 4 years later, who knew how complicated and challenging it would be, who knew that he still would not speaking 1 word, who knew.....

I sat in the parking lot at CHOC with RAW emotions of the news 4 years ago....still so raw and fresh today. People say time heals....wonder if I will ever heal from this.

I

Last Post

So, I was just realizing the last post on my blog was not a great one....in May. Whew...so much more to catch up on since that day. I am thinking I am going to try and blog a little bit to catch up on the last 6 months. Let me start with the additional diagnoses that Anderson rcvd since the 15 Q 13 microduplication. As I said in my 15Q post, we went to the geneticist b/c the neuro thought Anderson has mitochondria. The initial test for the mito came back negative, so they did the microarray looking for the 15Q, which was positive.

Once we got the 15 Q results, the geneticist was really surprised that the mito was negative b/c most 15Q have mito as well. So, they retested Anderson.

I went to see the geneticist with Anderson and Anderson's ABA in September. Charlie didn't come with me b/c we were assuming that the test results would be negative, they were before, right? Dr. comes in, sits down and said, YEP, the results I had expected....POSITIVE for mitochondria. WHAT?? I don't think I heard another word after those words. How could I process this?? I am by myself (again, why is it that I am ALWAYS by myself when the bombs drop??)...UGGH!! So, I ask 101 questions as my mind is racing. The dr feels these are more accurate results b/c the blood work this time was FASTING blood work, last time it was not done while he was fasting.

Mitochondria is very difficult to understand. There are varying degrees of it, as many of these things. Mito is the lack of energy in the powerhouse of the cells. So, basically, Anderson's body does not use the energy in his cells efficiently. There is NO cure, only meds to stop progression, it is a degenerative disease ;( that can impact the brain, liver, kidneys, heart. As of now, we do not believe any of these organs are being impacted in Anderson, we will continue to monitor closely.

The only thing you can do is give a "mito cocktail" of various vitamins and supplements to stop the progression of the disease.

We have not started the meds yet b/c we are waiting for an EEG first. The EEG was suppose to be tmr, but the neuro cx it today.

Then, in addition, in September Anderson's neurologist officially diagnosed him autistic. For Anderson, seems like a "label". He has so many medical issues, that it is hard to decipher what is causing what in him....but as it stands he has the following medical diagnoses:

15Q13 microduplication
mitochondria
Chiari 1 malformation
autism

WHEW! That is quite an extensive list for 5.5 year old child.

My heart was once again broken in pieces in September, I cried for about 2 weeks on this one (the 15 Q took me about 2 months to stop crying).....

Things I will blog about in the coming days/weeks...this is my reminder:

1) TMS/CHOC speech
2) School district Mess
3) Potty Training ;)
4) EEG
5) neurologist - Dr. S

Everyday is always a new adventure. I have been saying for so long, I need to blog again, need to blog again. I am going to try and start doing it.....today!!

Answers!

It has been a long long long time since I posted anything. I have found that the use of Facebook makes it easier and faster for me to document my little ones funny things! I hope that I start blogging again, there is so much more you can blog about, but the time to do it is hard for me to find ;)

Last Tuesday was a bittersweet day for us. We had an appt with Anderson's geneticist.

Background: We saw a new neurologist the end of last year. She is a great dr, and interestingly has Chiari 1 herself. When we saw her, she felt Anderson was NOT autistic, but had autistic "like" characteristics attributed to something "bigger". The neuro sent us to see a geneticist/metabolist looking for mitochondria (energy in the cells are not used efficiently and do not fire quickly).

We saw the geneticist in January, he drew blood checking for mito. We went back in March and Anderson did NOT have mito. However, the geneticist felt after reviewing Anderson's record there were 2 tests he wanted to perform on him checking for 2 different things.

I felt in my heart something was going to come back from these tests, I had a "feeling"......

The Friday prior to our appt, the geneticists' intern called me. She starting asking me a lot of questions....I found this odd b/c they did not do this prior to the last appt. At this point, I KNEW something was coming back!!!

Unfortunately, on Tuesday, Charlie could not come with me to the geneticist. We had spent the entire morning in Anderson's IEP with the school district. That meeting took 3.5 hours and Charlie really needed to get to work. So, I went to the geneticist.....by myself ;(

Anderson was sitting on my lap when the dr came into our room with 2 interns and his genetic counselor. I looked at the genetics counselor that we have known since Anderson was 1 and she would not look at me. My stomach flipped.......

The dr sat next to me and said, well, we have more information this time. I sat nervously waiting to hear which of the 2 things came back positive.....I did NOT "want" either diagnosis.....they were not good and I knew it.

The dr told me which one was negative, and I started crying.....that meant I knew the positive before he told me ;(

As I sat listening to the doctor, I felt someone was speaking Greek and Chinese to me. It was so overwhelming and surreal to sit and listen to the things the dr was saying and realizing he was speaking about MY CHILD. There are hardly words to describe how it felt.

Anderson had a test done when he was one called a "macroarray". It looks at the chromosomes looking for abnormalities. Today, 3.5 years later, that test has developed and has better resolution....the test is called now a MICROARRAY. Thru the microarray they were able to give us a diagnosis.......

15q13 microduplication syndrome - a chromosomal abnormality

At Anderson's 15th chromosome, a section of the genes duplicated. Some individuals have a full extra chromosome 15th chromosome, Anderson does not have a FULL extra chromosome, he has extra genes within his 15th one. (Down syndrome is an extra chromosome or extra genes at the 21st chromosome to give you a point of reference.....)

This duplication is the mostly commonly found genetic marker in AUTISTIC children.

So, we got 2 answers at once.....he has the 15q13, but confirmed now....autism.

Double hit!

I asked the dr the connection between all of this and Chiari....he explained that children with 15q13 tend to have other congenital abnormalities....IN Anderson, his is the Chiari 1.

I had tears in my eyes, the dr said, no, no no don't go there. So, I quickly pulled myself together and asked many more questions.

Basically, dr is not worried about our other 3 children b/c they are developing typically. We do not know where this came from....it "just happens". As you can imagine, since this test did not exist 3.5 years ago, this is NEW research, the dr said that the information about 15q will be developing with Anderson.......research continues with 15q, it is just so "new".

The geneticist was "surprised" with the 15q that Anderson came back with NO mitochondria. So, we are rerunning more tests trying to check to be sure he does not have mitochondria. We will not have these results for several months.

It is bittersweet to have an answer. We have spent the past 4 years searching, looking and searching for an answer........the neurosurgeon said for the past 2 years the Chiari was secondary to something else....what was the "else"?? Well, we got our answer Tuesday, 15q13.

After the dr left, I busted in tears. The genetic counselor stayed behind to talk to me. She had tears in her eyes as she talked to me. She put into words how I was feeling...."Liz, I know you have been working so hard the past 4 years for answers and you got them. As a Mom you have so much hope this will "all go away some day"....today, you got an answer and it is genetic....it is not going to all go away." It was EXACTLY how I felt, exactly.

I am trying to find peace that we have an answer and I can stop looking and searching. I can now take all of that energy and put it into recovery and helping Anderson.

Another positive is......we did not realize it, but ALL of the therapies the past 4 years, the diet, the supplements, etc from the biomed dr we have been doing the last year is EXACTLY what we need to be doing to help Anderson. So, we have accidentally been doing all the right things.....intense therapy and alternative treatments in autism. We will just be going after these alternative treatments more aggressively.

We have found the link between Anderson's delays. When you read about 15q13 (not very much on line b/c it is sooo new), you feel like you are reading about Anderson.....hypotonia, cognitive delay, gross motor delay, fine motor delay, speech delay, etc.

Today, Anderson still can not say 1 word, he can barely make a circle with a crayon, he is not potty trained, he screams a lot, cognitive delays etc......and he is almost 5. Anderson continues to make improvements all of the time! He is evaluated every 6 months during his speech therapy. During the past 6 months, he had the most growth out of any other 6 month period in his life, which is very encouraging. These small accomplishments mean the world to us.

It was confirmed last Tuesday, this is going to be a life long battle for our little man, but I am determined to help him develop to the best of his potential.

We tried to explain the 15q and autism to Kaitlyn and Ryan a few nights ago. They asked us great questions, "How did he get this?", "Will he ever talk?", "why did this happen?". We answered all of their questions as honestly and openly as we could....but, we just don't have the answer to most of these questions anyway ;(

Thanks for all of the emails and phone calls. I appreciate all of them. It has been a hard week and I was just not really ready to talk about it. Still trying to wrap my head around it and what it all means.........

15q13 microduplication syndrome, autism, Chiari 1 are Anderson's diagnoses

I feel relief I have an answer, but heartbroken of what the answer is..........