Fisher's First Birthday

What a great way to end the month of January! Fisher turned 1 on January 27th. His head is doing great! His forehead has no ridge sticking out, and his eyes do not seem so close together....He also recites the alphabet backwards....(just kidding!...I don't expect that for another 6 months :)

Fisher will probably start walking in the next week or so. He cruises around while holding on to the cupboards and furniture. He acts like nothing has happened. The only residual effect is if a stranger comes too close to him, and looks at him too long...he thinks it is a doctor and really starts to cry with fear. Fisher also freaked out in the Rehabilitation Center/nursing home when Bleu took him to visit Bleu's mom a week after he got out, thinking it was the hospital again.

Also, during the first 2 weeks or so, we had to adjust Fisher into sleeping in his crib again...for the first week he refused to go in it, with memories of his hospital crib. This week is his first week he is really sleeping all night alone...with waking up once or twice, needing us to soothe him back to sleep.

His stitches are healing beautifully. They are the dissolving kind, but we have to rub them during the bath to try to loosen off the outside stitches as the dissolve under the skin. I think that hurts more for me than it does him, which is good.

We went back to CHOC for an quick appointment with Dr Sundine the day after his birthday, as on Jan 23rd we woke up to notice an indentation on his forehead instead of it being flat, as was before. Dr Sundine said it was unusual but when he looked at it, he said it must be just the swelling going down unevenly. It still is there, but barely visible.

What a difference, though!!! During the first week after his operation, I had to adjust to his new look...He looks great...but does look different than he did since I have known him. It definitely is an odd feeling for a mom. I am so happy he is doing well, and had bounced back so fast!!!!

Thank you everyone for your prayers and support....I have gotten more and more people contacting me after his operation saying they were praying for him on January 8th. We all appreciate it so much! Fisher is a very loved boy!!!

If you are reading this and have a child with the same condition...please feel free to email me at alison@bleucotton.com and I can answer any questions and help you with support. I know Craniosynostosis is a condtion you don't ever hear about until someone you know gets it....and then it is shocking since you wonder why you never knew about it before. I have learned that a lot of kids may have it...but they have been operating successful for over 25 years! So if the doctor you meet with knows what he is doing, you are in good hands!

Fisher's Fotos!

Here is the transformation over the past year of my Cutie Patootie! You can see the Metopic Ridge in the middle of his forehead.

This is Fisher the day after he left the hospital a year ago almost. Fisher at 2 months old.

Fisher at about 5 months old.

Fisher's 9 month old portrait at his dedication.

Now, this is Fisher with his Blue Steel Look last Monday Night 1-7-08.

And in his bath last monday.

Tuesday Night 1-8-08 at 7pm, about 6 hours after he came out of his operation. You can see one of the drain tubes. The next day, swelling hides it.

8:30am Wednesday 1-9-08, his swelling starting....not feeling really good!

1pm on Wednesday, 1-9-08 ...24 hours after his operation, swollen eyes.

6:30pm on Wednesday, 1-9-08 with an icepack on his forehead...my creative Diaper Ice Pack that actually worked better than the ice pack CHOC gave me! He is continuing to swell.

Thursday 1-10-08 at 6:30am before we moved out of ICU. Drinking his bottle with his swollen eyes and E.T. glowing big toe.

10:30am Thursday 1-10-08 in room 517. Still swelling up even more, and getting shiney skin as predicted.

1-10-08 Thursday at 1:30pm..his swelling moving down into his neck. I held him on pillows on my lap, he could not lift his head at all.

3:30pm Thursday 1-10-08 his eyeslids began turning red.

Thursday 1-10-08 at 9:30pm. Sleeping, and actually starting to look better.

1-11-08 Friday at 9:30am. Fisher and his pals.

1-11-08 Friday at 12pm. Dr Sundine took out the 2 drain tubes in his forehead and on top of his head. The Sumo Band was to hold the pad of gauze on the 2 holes behind his right ear.

1-11-08 Friday at 5:30pm... the first photos of Fisher peaking out of his eyelid slits. He loved catching up on emails on Daddy's phone.

Ya! A smile for mommy when he saw the camera!

1-11-08 Friday at 7:15pm looking at his horsey.

1-12-08 Saturday at 1pm, napping. The I.V. was moved from his foot to his hand. His eyelids were really red as the swelling left his eyes.

1-12-08 Saturday 3pm. Sitting up in Daddy's lap smiling and seeing us through his little slits.

1-12-08 8:30pm Saturday...after watching the football game in the family lounge.

1-12-08 10:30pm Saturday. Asleep but not for long, as the toilet flushing incident is about to occur soon!!!

1-13-08 Sunday at 12pm...we just got word we are leaving soon! Watching Mommie pack and being his old self again!

I love this shot!!!...Looks like Mr. Trouble is back in town!

2pm Sunday 1-13-08. Leaving CHOC, and stopping by the hospital radio station to request a song!!!

1-13-08 Sunday Night 7:30pm and back at home. What a different forehead! There is still swelling, and I am not sure about how much it will be going down..but you can see the difference in the eyebrows and width of his head!

OK...one last comparison...Here is an after shot...and below it is from a week ago... before the operation.

Before....

Happy Healing Fisherman!!! Love, Mom & Dad!

Fisher Bleu is back!

I am sitting in our living room, and Bleu and Fisher are sound asleep on our bed...yes, we made it back home today!

Last night Bleu went home to sleep...as he felt he was getting a cold after the lack of sleep during the week, and only one of us could stay the night. Fisher got to bed at about 10:3o pm, after an exciting day of seeing again. I was all tucked in the cot ready for watching a couple minutes of SNL as a treat, and ready to then doze for few hours of sleep. That is when a nurse working with our roommate decided to flush the toilet on our side of the room...ugh! Fisher woke up and cried and cried...another reason why every hospital needs single rooms!!!.... I took him on a walk around the halls in a radio flyer wagon that CHOC has for calming kids....it was a moment in time I will never forget. He was so content!

Well, we ended up walking at 11:30pm, 1am and 4am...with only a tiny bit of sleep between. After our 4am ride, he finally got comfortable between my legs with his head on my stomach, and I slept on my back, as if we were ready for a bobsled ride....It was nice to know we could snuggle with less fear of hurting his sensitive body.

Today we hung out in our room, took another wagon ride, and waited for Dr Sundine to let us leave. Yippee! He was so pleased at Fisher's healing.

On the way out it was 2pm and there is an In House radio Station at CHOC called Radio Lollipop, which kids can listen to and request songs. It was donated by Ryan Seacrest and KISS FM I believe, and is such an amazing addition to the hospital. It is in the lobby, so we stopped by and requested "Good Day Sunshine" by the Beatles for Fisher.

Back at the house, Fisher is doing great! He only took his Tylonal with Codeine once today, instead of every 4 hours. He is playing with his toys, getting in trouble, and being the best baby ever!!!! I still am amazed at his transformation. I will miss his old look...I never thought about the fact my baby's appearance would change....but let me tell you, he is very handsome now!!! Watch out, ladies!!!!! This is another reason why photography is so important in our lives, we photographed him so much that it will be great to look back on, years to come.

I will follow with some photos of this last week. They may be shocking, so please be warned. I hope this will help others going through the same path as we took over the last few months.

So, this is the end of our journal, except if there is anything that arises at the follow up appointments in 2 and 3 weeks. I will also add a photo when Fisher has no swelling and no stiches. Hopefully I can contact CAPPSKIDS.ORG and connect this site for part of their support group for others.

Once again, thank you for being a part of our journey! Fisher is a very lucky boy to have you so close to him this week.

Our love, Ali, Bleu & Fisher, too!

Good day Sunshine!

I think my title is a perfect one for today's blog entry, as I heard this song
today as I drove back to CHOC and listened to it on the loudest volume in
the car.

Last night I slept like a log ....my bed felt the best it had ever felt.

Bleu and I talked this morning on the phone, and I could hear fisher
say "mama" in the background.  Bleu said fisher had a new IV put in
his arm last night at 1 am  after the one in his leg got too old and swelled
his ankle up.    He then slept until 7am....and was awake and very active,
eating baby food and fruit, his first big meal.   His eyes were swelled up
again due to sleep, but were slowly reopening.

When I got to the hospital I walked in and could not believe the difference!!!
He was sitting up in bleus lap being himself!   His eyes have opened up half
way and you can see the beautiful blue color that I missed so dearly during
the last 3 days.

This afternoon he became the social butterfly again and the swelling in his
head has improved dramatically. We spent the afternoon playing in the
family room, away from his cribside.

Now I look at him and can see his forehead looks so different!  The new
shape of his forehead  makes him look like a different baby!!!

Right now I am with him getting him unwound for bed.  He is laying in
his crib just relaxing and fighting his sleep. He was awake for 12 hours
straight.  It has been the best day ever!!!

In the next few days I will post all of his photos, as we photographed all
 of his stages.  It is really incredible!!!

Good night!!  Ali

Fisher is sitting up!

Bleu called me tonight from the hospital, as I got home for the first time since Tuesday am to spend the night here. Fisher was sitting on his lap grabbing at his phone as he spoke to me. I have to totally say...What an amazing ride it was from after the operation til today...he got so swollen on Wednesday and Thursday that we could not even see the tubes in his forehead....it was like a cocoon...he hid in this swollen shell that now is removing himself once his body could kick in and repair himself. He really is a superhero...babies amaze me with their recovery abilities. Dr Sundine had told us if we took off his skull, he would and could actually build himself a new skull from the layer below. Just amazing. And he is able to now emerge and come out to have the same movements and motions as before. Just incredible. And what else is incredible is that I can SLEEP tonight!

When we get Fisher home I want to put the photos up on this blog of the whole transformation. It really will be amazing and shock you. Stayed tuned to see them!!!!!

...day 3, 5:45 PM

Today Fisher's swelling is starting to go down.  It is nice to see
the end of the road of recovery ahead.  He looked like a pumpkin head, and every hour yesterday you could see the swelling grow and grow.

Last night was the first night in the regular childrens ward.  We
had a roommate move in, and fortunately she moved to a different
room since the roommate match was not good....So we had the room
to ourselves which was nice, allowing Fisher to sleep better.
He woke up every 2 hours and we even got to sleep in and be low
key until about 9 am.

Today Dr Muhonan said he may be able to leave tomorrow if he can
open his eyes.  Dr Sundine took out his 2 drain tubes in his head....Ouch! He just pulled them out in about 20 seconds. 
So now he only has his IV for his antibiotics and his pulse monitor
on his big toe.
He now just has an added band around his head holding the gauze over
the exit holes of the tubes by his ear.  My little Sumo Wrestler.

Today was a day we saw his body look better instead of looking
worse...it is a nice feeling.  He is now eating a little bit of
solids and milk.  We took off his "no no" arm bands that were on
to prevent him from pulling at tubes.  His eyes are itching, so we try to keep his hands away, and use a long Qtip to softly run over his lid and below his eye to relieve the itching.

Bleu is staying with him tonight.   Hopefully he will get more sleep
than the last nights.  

Our new roommate who arrived today has been
a better match for us, but I am a huge huge believer in raising money
for hospitals to build new wings with single rooms...the high noise
level and constant activity to a patient when there is a roommate cannot
be beneficial to a healing child....  Don't get me started....

We will update again tomorrow....

NEWS FLASH......  As I am writing this by his crib, Bleu went to the other
side of the crib and we changed his diaper... And his left eye opened to
see us... His swelling has gone down so we can see his eye.  I started to
video tape and he reached out to the camera as he always does to grab it.
Now a few minutes later, as I write,  he has stuck his toe in his mouth,
played with Bleu's phone, and talked babble at us.  I now see both his
little eyes peeking out of the little slits....what a amazing experience...he
is a different baby!!!

What a night!  Our love,  Ali, Bleu and fisher, too!!!    

Day 2...... Oh my, it feels like its been longer!!

Fisher was up every hour, but we did sleep well from 5 to 7 am. We moved to the 5 th floor at 8 am, and left our luxurious single room. Now we are in a room that had an older boy who just checked out, and now rumor has it that a girl is moving in. Fisher is such a ladies man!

It is really not the best situation to be in a room with another child when all we need is quiet. It also is not fair to an older child who should not hear a baby cry in pain so much. I still remember my hospital stay as a 2nd grader, and the child next to me who had a pin through her legs...she moaned and cried and really impacted me as a young kid.

We are by the window, which is nice. They took out his IV line and the monitors on his chest, and his catheter. He does have a temp of 101 but that is expecte, it has been going up and down a little as he swells. His face is very puffy, and now his neck is too. He is not interested in food yet. He threw up twice when he drank pedialyte and then had the cherry flavor tylonal and codeine. His poor tummy is not happy with the medication. The nurses are giving him something in his IV for his queeziness.

Right now he is on my lap content and sleeping. I am about to doze off now, too!

Our love,

Ali