Anderson's Surgery - March 3rd

Okay.....if you notice, I basically started this blog, and one my last "regular" posts was November 26th (I was getting on a roll until then). However, on November 28th, Anderson was diagnosed with CHIARI 1 MALFORMATION and our whole world changed.....Google and I have been attached at the hip ever since!

Let me give some background....in my heart, I just knew something was wrong with Anderson and I have known for a long time. At 3 months of age, Anderson was diagnosed with torticollis. This means his head was "tilted" to 1 side. He started physical therapy (PT) 2 times a week at Children's Hospital of Orange County (CHOC). He was achieving milestones, but they were not with the same precision as Kaitlyn and Ryan. Then around 1 year we started to notice his fine motor skills were falling behind and his gross motor skills were as well. At this point, his torticollis seemed to be resolved, but we had these developmental delays that we were dealing with. His gross motor, fine motor and speech were all affected. At 1 year of age (and still today)...Anderson had NO SPEECH. He does not utter 1 word, or even babble "da, da, or ma, ma". And, Anderson was not walking at 12 mos.

We contacted the state for an evaluation. We had a complete evalu done. Anderson's delays were significant enough that the state said Anderson needed physical therapy (PT), and occupational therapy (OT). However, he was too young for speech therapy. At 15 mos of age, and no progress in speech, we went back to the state and our wonderful case worker got the state to approve Anderson for speech therapy as well (Anderson was the youngest person our case worker has ever seen get approved.)

During these months, Anderson had all of us confused. The only thing his PT and OT would say was they saw a bit of hypotonia (a medical condition of low muscle tone). Then one day, Anderson's OTherapist told me she thought Anderson needed to see a neurologist. GULP. So....off we went. The 1st of November we saw the neurologist.

The neurologist said she saw a bit of hypotonia as well, which is what probably caused his torticollis at 3 months (the weak muscles caused his head to tilt to 1 side). The neurologist told us there would be over a 50% chance of NEVER knowing why Anderson had hypotonoia and these developmental delays. However, she wanted to order a MRI and send us to a geneticist. The MRI was scheduled for the end of November, and we went to the geneticist.

Our geneticist told us the same as the neurologist, we probably would not find anything on the MRI, typically these delays go "undiagnosed". However, she felt that Anderson had global hypotonia. Meaning....Anderson has low muscle tone thru his whole body causing the delays in gross motor, fine motor and speech. GULP AGAIN. This doctor told us that the hypotonia was secondary to a bigger condition...which could be 1 million different things. The geneticist also referred us to a metabolicist. So....our search continued.

We had the MRI on November 27th. I received a call from the neurologist on November 28th that told me to call her by the end of the day (NEVER a good sign!) When I called her she told me Anderson had Chiari 1 malformation. My first response was....could you PLS spell it? ;) Then, the doctor told me we needed to go to a neurosurgeon.

I called the neurosurgeon, (who typically takes 3+months to get into), and we got an appt in 6 days...again, not a good sign.

Now let me back track a little bit here.....6 weeks prior to Anderson's diagnosis, I told Charlie I thought Anderson was getting headaches. Anderson would bang his hand against his head, rub his head in "odd ways". In addition, Anderson is a "fussy" baby. He will just cry and cry. I will try everything to soothe him, nothing works...except if I give him Tylenol. Then, 10 minutes later, Anderson would be happy again....hmmmmm....

We met wit the neurosurgeon who explained Chiari to us (well, I will be honest, Char and I were googling the HECK out of it ourselves!) It is a rare condition and not well researched. Basically, Chiari means that in the back of our heads, we all have a hole in our skull. In this hole we should have our brain stem and spinal cord. In Anderson's case (and other Chiari patients), his brain is herniating thru this hole. His brain is being compressed against his skull with ech heartbeat, and it is compressing his spinal cord and brain stem. The #1 symptom....headaches!!! (YES, refer above!) The treatment is surgery...there is NO CURE, just treatment!

This neurosurgeon thought it could be contributing to Anderson's gross motor delay, but that was about it. He wanted to wait and see, give Anderson the benefit of the doubt.
He said if we saw Anderson start to bang his head more, plateau in his development or regress in development...then come back.

Okay....now it is the end of December....we have a diagnosis of global hypotonia and Chiari 1. We are just "waiting and seeing". We start to notice that Anderson is not progressing in his development, still not walking (17 months old) and still not talking (at all...no babble!)...Anderson was "plateauing".

So, in beginning of January, Char and I decide we need to go back to our neurosurgeon. We make an appt, and I decide we can't be the only family out there with this.... I am going to start seeking families with kids with Chiari. I found 2 support groups, I made a post on ech one....within 24 hours, I had over 25 emails with people who had children with hypotonia, developmental delays and Chiari!!! We felt like we hit the jackpot.

In addition, in January, we see the metabolicist. Basically, he said he felt that all of Anderson's delays and hypotonia were b/c of his Chiari and this doctor told us to pursue the Chiari.....

One of the common lines b/w all of the people who emailed us was...find the BEST CHIARI doctor, not the BEST NEUROSURGEON. Chiari is so rare, you really need to have an interest in it and study it specifically.

Thru the support groups, we located a pediatric neurosurgeon in Chicago who has a special interest in Chiari. I emailed the doctor, Dr. Frim, and he said that in deed these delays could all be connected and that we needed to come see him.

Here is a list of some of Anderson's symptoms at this point:

headaches
gags on his food 1-2 times per meal
weak arms
does not raise his arms up
delay in fine motor
weak grasp
poor balance
lack of speech
hypotonia
delay in gross motor - still not walking

On February 12th, Charlie, Anderson and I made the trip to Chicago. On February 13th, Anderson had 3 more MRI's to rule out other complications that Chiari can cause. February 14th, we met with the doctor and he did recommend surgery. The good news...the additional MRI's came back clear and normal! YAHOO!

Dr. Frim said he sees children with Anderson's problems. Chiari CAN CAUSE hypotonia and other items listed above. Finally...the link we have been looking for!!! In some cases surgery will help, some cases, it does nothing...but he was willing to try if we were willing to do the surgery. Charlie and I feel that if it simply relieves Anderson's headaches and makes him more comfortable, it would be worth it!

The neurosurgeon here in Orange County performs this decompression surgery approx 1/month, Dr. Frim does this surgery approx 1/week!!! BIG DIFFERENCE to us. We wanted someone who had the most experience with children and with Chiari! We feel we found our Chiari doctor.

Surgery is scheduled for Monday, March 3rd. We need to be there at 6:45 AM central time. Surgery will be approx 5 hours. We will be at the University of Chicago's Comer's Children's Hospital.

My Mom will be coming to California to be with Kaitlyn and Ryan for 1 week. Then, my mom and Popo Jim will fly them to Chicago once Anderson is out of the hospital and recovering. We need to be in Chicago for 2 weeks for Anderson's post-op appt. Charlie's parents are on call and ready to go and come help us in Chicago when we feel we need it. Charlie's Mom will be coming out to California the 3rd week when we get back from Chicago. We are so lucky to have our family and friends to support us!

The kind people across the country that took the time to answer my posts are our little angels. They took the time to share their stories and experiences with us and have led us to where we are today. We are so thankful for them and everything that has happened. We finally feel like we have something we can do to try and help Anderson after all of these months of searching! We could have possibly found a reason that we were told would be 1 in 1 million and over 50% chance we would never know!

I have such mixed feelings about all of this. One minute I am strong and ready to go, the next I am crying and crying. We are excited, nervous, anxious, hopeful, etc...I am sure you can imagine the thoughts you would have if your child were going under brain surgery.....

Because I believe in the power of prayer and positive thinking, I am sharing this with all of you. We feel so blessed to have such a great team of therapists at CHOC and an incredible doctor, Dr. Frim, watching over Anderson. I am SO HOPEFUL and I BELIEVE in my heart this is the answer we have been searching for......

We will continue to update this blog during Anderson's surgery and recovering. Feel free to check back to see what is going on with us! THANK YOU for all of your support.

Boofs

Ryan is so funny. You never know quite what he is going to say...latest....boofs. He says to Charlie one day.."Daddy, boys do not have boofs". As Charlie looks at Ryan not understanding, Ryan continues with, "You know Daddy, girls have boofs where babies nurse, boys do not have boofs". Yes, Ryan you are right.

Today, at school.....a cute teacher, Mrs. Munro is pregnant. We were telling Ryan how 1 of his favorite teachers is going to have a baby, we were pointing to Mrs. Munro's belly explaining it to him. He turns to me, points to my "boofs" and says...."There are not babies in those boofs". ;)

Treasure Hunt

Yesterday, our friends...Elaine and Ella came to the door, they were on a walk. We decided to go on a walk with them.....we call our walks "treasure hunts". We take a small ziploc container with us b/c you NEVER quite know what you will find (snails, rocks, rolly polly's, etc).

Anyway, as we were walking, Kaitlyn, Ryan and Ella SQUEAL with excitement. Elaine and I look up in the sky and there are 2 planes leaving a "tail" behind them. (you know how that looks). Kaitlyn says, "Look, it looks like they are making a cross (as the 2 planes make a cross). " Kaitlyn continues to say, "This reminds me of Jesus"....then those tails start to fade away and there is 1 plane headed in a "downward" direction making a trail behind him (hope you are following this). Kaitlyn then says, "Look Mommy, they are reminding us that Jesus died on the cross for us, and now it is a tear drop, it reminds us that Jesus died and there is a tear!"

WOW! To think she is only 5......she is SO wise beyond her years!!

TOO long again

Okay, it has been WAY too long again...my days on the computer are now spent "googling" Chiari for Anderson.

Anyway, today on the way home from school...Kaitlyn said some of the cutest things. She was telling me about her day and she said, "Mommy, some of the kids in class were not using their manners. Jesus would not be happy with the choices they were making. They need to find Jesus in their hearts and make better choices". WAY TO GO KAITLYN! SO cute!!

Anderson

Last night, we were playing after dinner. All of a sudden, Anderson was just standing in the middle of floor. Kaitlyn yells, "Mommy and Daddy...look, look!!" We turn around to see Anderson just standing there. Then, he bends down, picks up a block and stands back up!! HOLY COW!!!! It is the 1st time ever! We were all cheering and yelling! Anderson was smiling ear to ear!

Kaitlyn said to us, "Mommy, I just KNEW you would not want to miss that!"

Then, tonight, Anderson was playing at the coffee table, he turned around, and took a step. Charlie and I both saw him, it was like it was in "slow motion". It was so surreal! Again, lots of cheers for Anderson!!

Anderson's metabolic appt went okay today. Basically, he does not have a metabolic problem. Seems like the answers to Anderson right now may lie with his Chiari. We are excited and anxious to see Dr. Frim in Chicago! Officially, less than 1 month away!

Bedtime

You just never know what the kids will say.....tonight at bedtime:

Kaitlyn - "I try to be the nicest and smartest girl in the whole world, even if my friends are not nice to me." (God love her!)

Ryan - As we look at the 1001 Pirate things to spy book....Ryan says "10 Mummies....just like you Mommy ;)"

LONG TIME!

Okay....here I go again....not writing things down. 100 things have happened since I last wrote and of course I can't remember them all. Char and I will try to think of them tonight. Kids say the craziest, funniest things!! They CRACK US UP!!! Will try to catch you up on the last few months.

It has been a great, busy, hard, emotional few months. Christmas was great, the kids LOVED every second of it. We certainly had our fun. Santa left his "toy" bag in our fireplace, so we mailed it back to the North Pole ;) Hope he does not leave it with us next year. Mima Lois and Popo Larry came out to celebrate with us, what fun!

New year's was fun. We went bowling with our friends Bridgit, Neil and their 4 children, and Bridgit's 3 siblings and Mom. Then, we went to Bridgit's house for pizza and dessert and a game of charades. Fun was had by all.....

It is a NEW YEAR and we are feeling great about this year. Good things will come this year, we just know it!

Steps

HOLY COW!! Anderson took his 1st few steps with a walking toy this weekend!! On Sunday...November 25th!!

He did a GREAT job!! Way to go Anderson! We are so proud of you and your hard work!

Santa smarter

Kaitlyn asks : Mommy, who is smarter...Santa or Mommy and Daddys?

CUTE!

Purse

Okay, I am copying my friend's Kristen's blog on this one....she listed out what was in her purse a few months ago..I was laughing, thinking are you kidding me? UNTIL..I cleaned out my purse. This is what I found:

NO wallet
NO sunglasses
Kaitlyn's headband
a pen that barely works
empty ziploc bag
list of pediatricians from Children's Hospital
Anderson's shorts
pic of Ryan from Chuck E Cheese
hairbrush
toy car
lip gloss
sunglass case holder (still with no sunglasses)
Anderson's socks
hairtie x 2
Advil
toothpaste
tooth cleaner (for my braces)
hairclip
diaper
pic of a volunteer dog from Children's Hospital
empty raisin container
empty cracker wrapper
floss
lego man
toothbrush
more crackers
hairtie for me (opps, this now makes 3, I think)
Peanut Butter Crackers - crumbled to pieces (or actually powder)
2 more pens
My headband

** all of the above listed as found ;)

HA! Who knew this would all fit in my little purse (not a diaper bag, purse!)

Ryan Puke update

Okay...well, Ryan's no puking streak has come to an end. Today, Nov 26th at midnight...he had his 1st puke. He made it to our bathtub (yes, bathtub...but, hey, I'll take it...easy to wash down!) And, why am I complaining? My SWEET hubby handles the pukes while he is home b/c I puke right next to the kids while they are puking, I puke...can't handle it! I am hoping by the time they are...oh, lets say 18,I can handle it!

PS - Kaitlyn ended up with it too. The end weekend count was :Anderson 10 AM Saturday, Kaitlyn 1 AM Sunday, Ryan 12 AM Monday, oh yeah...and then Anderson again 5 AM Monday (not sure what that was about!)

SNOW IS WHITE

Everyday Kaitlyn dresses herself. I have to say, she does quite a great job. Sometimes it gets a little "wild", but for the most part, just great. Well, last week, she got dressed for school wearing a pink and white skirt, white shirt, white socks, etc. She wanted to wear her WHITE SHOES with the outfit. (For those not checking, it is WAY past Labor Day!) I tell her that white shoes are not meant to be worn in the winter, those shoes are Easter shoes, and we wear them in the Spring Time.....winter we wear black. Kaitlyn looks right at me ands says, "But Mom, SNOW is WHITE, I do not understand WHY I can't wear WHITE shoes in winter time".

Well, then Kaitlyn, you have made a very VALID point...go ahead, wear your WHITE shoes to school today ;)

Signing

This is incredible.....

We have been trying to teach Anderson sign language for about 6+ weeks now. The therapists want me to only give him a few pieces of food at 1 time so that he is forced to ask for "more". So we have been signing more with him. Last week, Char was in NY, the kids and I sat down for lunch together. I gave A only a few pieces of grilled cheese. RYAN actually noticed A's tray was empty. Ryan asked Anderson "Do you want more little buddy?" (As Ryan says this, Ryan is signing "more" to him). WOULD YOU BELIEVE that ANDERSON signed more RIGHT BACK TO RYAN?? Kaitlyn, Ryan and I were SCREAMING with delight. IT was wonderful. Makes me teary thinking back to that moment. It was terrific!

The following day, I was leaving Children's Hospital with Anderson. He had a sippy cup in hand. I had to take it to buckle him in the car seat. He started screaming. I said, "A, tell Mommy MORE". ( I DID NOT SIGN IT THIS TIME). Next thing I know, Anderson is signing more to me!! HOLY COW, I was THRILLED!!!

New Tricks

Anderson has SO many new tricks since I last wrote. I am going to try and remember them all and make a list:

1) Climbs on our child chairs in the playroom, stands up, turns to you, you say "1, 2, 3 JUMP" and he will jump to you

2) Saying "Da, Da"...very clear, loud (thru the grocery store), and 2 Das together

3) Points to a dog and says "D", "D", "D"

4) SIGNING MORE!!!! That is another blog entry to come!

5) "Walks" up the stairs while someone supports his trunk (he takes these BIG steps up ech stair)....always with a HUGE smile!

6) Tries to climp the ledge in our family room

7) Floats at swim lessons for more than 10 seconds (it is actually long time)...he screams while he does it, but he floats!

8) Turns pages in a book

9) Starting to "release" toys into a bucket

All I can think of now. Will add more later if I think of them.....But, LOTS of new things going on around here!

1st Pukes

Okay, I have been VERY behind on my blog. LOTS and LOTS of great stories to catch up on. The 1st for tonight is our day today. Whew. Poor little Anderson. His 1st stomach flu. Poor honey woke up from a morning nap with it all over his bed and himself. then, continued about 6-7 more times. Finally went back down for another nap, and woke up ready to go and ready to eat. Had to be careful what we fed him. Funny how a 16 mo does not understand that ;)

Note that Kaitlyn was over 3 before she had her first pukes. Ryan TO DATE has NEVER puked!! WHEW! LUCKY

Swim Lessons for A

A is doing GREAT at swim lessons. He has made such improvements over the past 4 sessions. Today, my friend, Bridgit, took K and R while anderson had swim. So, I was able to "observe" a little better. When the instructor says "Read, set, go"...A will close him mouth and go under. Then, he rolls on his back (with assistance) and floats. The instructor, Judy, said that A is holding up his head in the float all by himself....she is only assisting his back and doing so very little. She said the 1st day, she had to hold him down on her leg to get him on his back. He is doing GREAT!!! And Judy was excited he was holding his head up by himself b/c he is having to use all of those neck muscles/shoulder muscles that are weak to do that!! YAHOO!!!

Anderson's new tricks

New list of tricks for this past week:

1) Pointed to his cup while out to dinner and made vocal sounds (communicating he wanted a drink)

2) Pointing his finger with his arm held up at 90 degree angel

3) Plays with big brothers "Lightning McQueen" car...shakes it up, places on the ground, and chases it

4) Starting to roll ball to me

5) Starting to put his hands on top of his head more, actually "rubbed his nose" with his hand, covers his ears with his hands

These new things are GREAT!! LOVE the progress he keeps making!

1st Baby

After we dropped Popo Larry off at the airport, Kaitlyn said, "Can I ask you a question". Char and I said of course. She continues with, "Who was the 1st BABY on earth? I mean, I know there is Jesus and God, but who was the VERY, VERY, VERY 1st baby on earth and WHO took care of the baby? Who made sure the baby was safe? The baby needs a Mommy, so where did she come from?" Char and I looked at ech other, our eyes bugging from our head and said "Can we get back to you on this one?" Kaitlyn says, "What, did you guys not go to school or something, WHY don't YOU know the answer to this question?" WHEW, she stumped us and she is not even 5 yet!!!!

Princess

Popo Larry was out to visit us last week. It was a blast. Everyone had a great time. We went out to dinner on Saturday night. On our drive, we were talking to Kaitlyn about being the only "princess".....Daddy's princess and Popo's princess. Kaitlyn says, "Popo, do not forget Mima Lois, she is your princess too!!" It was adorable!

Sweet Pea

Ohhhh....Kaitlyn is such our little sweet pea. Anderson started swim lessons last Thursday to help strengthen his muscles. The following morning, Anderson was playing with an empty box of wipes from Costco (for those who have seen it, it is a fairly large box). Anderson was banging on it, moving it, climbing on it, and then he picked it up. Kaitlyn yells, "Mommy, Mommy, Mommy...Anderson just picked up that box, I think the swim lessons are WORKING!!!" :)

Later that Friday, I took Kaitlyn out for a girls' afternoon. I had a sitter at the house with the boys while our new carpet was installed. We went to a place and checked it out for K's bday party, went to McDonald's for lunch, and we were going to the nail salon for manis/pedis. While at McD's...Kaitlyn looks at me and says "Mom, thanks for making this day so special for me"...her eyes twinkled and her smile as big as her face. It was ADORABLE!! I gave her the biggest hug ever!

Our little sweet pea.....

Doctor Today

Today Kaitlyn and Anderson had an appt with the ortho doc. Kaitlyn needs to break the "habit" of walking on her toes (according to the doc). So, she needs to have a "wedge" added tot he bottom of her shoe to help her. The doc told me to buy a pair of inexpensive shoes to be her "special walking shoes". Yes...broke down and bought her a pair of PRINCESS, LIGHT UP shoes. OH MY! I can't believe I okayed it, but we will do ANYTHING to get her to walk on her heels! Casting her just does not seem like an option right now! Kaitlyn is in heaven. She ran around the house tonight in her light up shoes ON HER HEELS!!! :)

In terms of the doc and Anderson....no new news. The ortho encouraged me and felt it necessary that A be evaluated by a neuro. So...just waiting until November 1st. It can't get here fast enough at this point. Prayers, prayers, prayers.

Although, Anderson continues to do new things and improve on the things he recently started...ALWAYS encouraging. Our little honey......

Popsicle

It is about 8:30 PM and all kids are in bed (well, so we thought). We are getting ready to watch the season premier of The Office. Charlie has a sinus infection and has lost his voice....so he has decided to have a popsicle. All of a sudden, Ryan comes downstairs (has been in bed for over 1/2 hour at this point) and says, "Daddy, you are NOT suppose to have popsicles on the couch. You need to sit on the HARDWOOD to have that popsicle". BUSTED!!!

New things

We continue to see Anderson do new things ever day. This past week has been great! Last week Anderson started to say "da", then the end of the week "da, da". Today, he said "da, da, smdnboiwent (random sounds), da". It was closer to babbling this AM! YAHOO!

Also, he is starting to point more "purposefully". If he says Chief or Princess, he will point and vocalize. Or, if the big ones are watching a show and a dog or cat comes on, A will point at the screen and vocalize!!

He is lifting his arms more!! Thank goodness. I have been working and working with him the past several days on it. In the past few days, he will actually lift his arms up when you put his high chair tray on the high chair (previously he would simply keep his arms down by his side, and you would have to lift them up on the tray for him). He lifts them to point (as I said b.4) and he is also just lifting them above his head in fun and smiling.

LOTS of GREAT improvements!
LOVE IT!!!

Talking to Jesus

I love picking the kiddos up from school. They always have the BEST stories RIGHT when they get into the car. Yesterday, I picked Ryan up from school and I was asking about his day, what he had for snack, who he played with, etc. He answers my questions then says...Mommy, today I talked to Jesus. I smiled and said, Oh what did you say to him? Ryan replied with..."Dear Jesus, Thank you for my Mommy and Daddy, my brother and my sister. AMEN." IT was ADORABLE!!!