Christmas 2010

We had a wonderful Christmas this year.  We spent time with all of our family and friends.  I went into the week of Christmas feeling pretty down but as Christmas eve arrived and we made our first stop at my Dad's house it was very clear to me how much our kids are loved by everyone around us and my mood shifted.  It was very evident that all of our family and friends have a deep, unconditional love for Dylan.  They always want to make sure they give him that extra hug and kiss and let me know how much they are praying for him everyday.  Wanted to let you all know that it really means a lot to me, thank you so much for caring.

Peek-a-boo

Dylan and Hailey playing the piano with Uncle Chad.

Our little chubby reindeer.

My handsome boys.

Dylan mostly enjoyed ripping the wrapping paper and playing with the bows.

Dylan walking with some help from Grandma.  Right before this picture he had just done two consecutive rolls to get to his new toy!  This was the first time he has ever rolled more than once at a time.  It was very exciting, my mom and I screamed "DID YOU SEE THAT, HE ROLLED TWICE!"

Luke and Daddy tuckered out after a long, fun Christmas.

Heaven's Very Special Child

Heaven's Very Special Child

A meeting was held quite far from Earth

"It's time again for another birth"

Said the Angels to the Lord above

This special child will need much love

His progress may seem very slow

Accomplishments he may not show

And he'll require extra care

From folks he meets, way down there

He may not run, laugh, or play

His thoughts may seem quite far away

So many times he will be labeled different,

helpless and disabled

So let's be careful where he's sent

We want his life to be content;

Please Lord find the parents who

will do a special job for you

They will not realize right away

The leading role they're asked to play

So with this child sent from above

Comes stronger faith and a richer love

And soon they'll know the privilege given

In caring for their gift from Heaven

This special child so meek and mild

Is "Heaven's Very Special Child."

- Unknown author

I have read this poem many times before and thought I would post it.  I have had some sad last few days, don't ask me why because I don't really know.  Maybe it is because Luke is already bearing weight on his legs and has head control at 6 weeks and it seems that Dylan just started doing that.  Or maybe because Hailey has begun asking more questions about Dylan lately.  For instance, "Mommy, why can't Dylan talk or walk yet?"  and "Why is baby Luke growing so fast and Dylan is growing so slow?"  My response has been that God made Dylan extra special and it is going to take him a little longer to do some things and it is going to take him a little longer to grow. 

I have been thinking about the future, and the truth is it really scares me.  I have also been thinking a lot of what life would have been like if Dylan was born with all of his chromosomes intact.  I even had to bite my lip to keep from full-on crying when I was in the checkout line at Walmart on Friday because I saw a little boy about Dylan's age running down the aisle.  I know that it is probably not helping me to have these thoughts but I can't seem to control it.  I am a pro at the art of smiling and laughing on the outside but screaming on the inside.  Unless I tell someone that something is wrong they usually won't know it.  So last night I went on an Internet search to look for some inspirational quotes or poems for parents of children with special needs and I came across this:

Everyday brings us unique challenges that can wear us down or build us up.

For within each day:

• We may have every strength and weakness of our own tested
• We will have to fight and advocate for our children
• We will choose to protect our integrity and theirs
• We will stand firm amongst criticism and in our beliefs
• We can choose to embrace their uniqueness
• We will love them with every part of our being
• We can find renewed hope and strength
• We can find peace and love where there may have not otherwise been
• We may cry, grieve, and mourn what we cannot, or do not have
• Yet, we can choose to celebrate, value and appreciate what we do

We face life with an incredible amount of strength and courage.  We count our blessings, we realize the frailty and preciousness of life, we find wings we may have never had, and we, in the end, inspire others and show our children amazing and unconditional love.  We climb a tough mountain, but the steeper it is and the more hurdles we encounter on the way, the more we appreciate the view from the top.  We have seen and learned things most people don't get a chance to.  We value differences, validate each other and know a love and appreciation deeper than most.

I think this hits how I feel right on the nose. 

Then no matter how sad I am or how much I am crying I take one look at this precious face and my heart melts and I can't help but smile.

One Year Anniversary of the Blog

I am a little late (Nov.18th would have been the exact anniversary) but I have been a little busy. 

Has it really been one year since I started blogging?  It has gone by fast. So much has happened that I can't believe it has only been one year.  Dylan has been through two surgeries, a broken leg, a seizure, numerous therapies and appointments.  We bought a new house, moved, had to change doctors and therapists, we even had another baby.  We thought that we weren't busy enough so why not add another one into the mix. :)

I have been asked by some, "why do you blog?"  Well, a little over one year ago I came across a blog about Norrah, a beautiful little girl who, like Dylan, also has WHS.  I read through her blog and saw a very happy family.  I looked at their pictures and read their stories and said to myself "I can make it through this." I was so inspired by her mother Lauren, the author of the blog, that I thought maybe I should blog too.  Blogging has been very therapeutic for me.  You see, after Dylan was born my life felt like it had been turned completely upside down.  I felt like no one understood how I felt, but I was able to sit at the computer and write about anything, anything at all and there was no one to tell me to just "get over it" or "stop feeling sorry for myself."  I had so many deep thoughts, feelings, pain and emotions that I figured maybe I should write it all down and what better place than a blog. 

Through blogging I have found great support from total strangers, who have become dear friends to me.  We share our children's accomplishments, joys and challenges.  These fellow moms have helped me get over the hump.  They have given me inspiration not only for Dylan but for myself.  I am motivated and inspired by these wonderful women who are happy, grateful and living their lives to the fullest.  I strive to be like them.  Some days are harder than others but I am getting there. 

I came home from dinner last night with friends and looked around at my house, my family, my life and had an overwhelming feeling of gratefulness.  I am so very blessed.  Thank you all for reading and commenting. 

Lets take a trip down memory lane:

Growing up

Dylan is getting so big and looking less and less like a baby.  Just a few weeks ago I was saying how small Dylan was and now he looks huge and feels like a ton of bricks!  He is definetely the BIG BROTHER in the house and is showing us everyday all the great new things he can do. 

Today was Luke's actual due date.  I can't believe that he is now one month old!  

Standing So Big

He says, "I know I'm cool."

So BIG!

I couldn't help but post these pictures.  Dylan is standing so strong now and I am so proud I had to share.  We no longer need the leg braces because he can now keep his legs straight by himself.  The greatest thing is that he wants to stand up, where before he showed very little interest.  In these pictures I am just helping him balance, he is holding up his own weight.  And they told us he may never stand up - Dylan likes to prove doctors wrong.


Dylan is enjoying his Wingbo these days.  He has really learned how to swing it and I hope that it will help to strengthen his back and upper body to help him with crawling. 

Happy Thanksgiving

This year was a bit different for us as we didn't take our annual camping trip to Dumont Dunes.  Obviously we have been a little bit busy and just couldn't fit it in and the last thing I wanted to do was take a newborn out to the desert.  So we stayed at home and ate a very delicious Thanksgiving feast thanks to my mom.  We are so thankful that our family was complete and together this Thanksgiving.  We have a lot to be thankful for.  Luke and Dylan are both doing great.  Luke has been home now 3 days and besides keeping me up all night to breastfeed is as cute as can be and we are all so very grateful to have him home.  Dylan had a follow up appointment with the Pediatrician this last Monday just to check on him following his seizure and hospital stay.  He weighed in at 16lbs!  I was so excited because I thought for sure he must have lost some weight when he was in the hospital because he barely ate for 3 days.  She thought that he looked great and because the seizure was febrile did not order another EEG at this time and did not start anti-seizure medication.  We will just keep an eye on things and if he shows any seizure activity we will just go from there. 

Dylan with Grandma and Great-Grandma

Our family all together at last!

Big Sister, Big Brother and Little Brother

Dylan was giving Luke kisses.

Baby Luke, the NICU, and a Seizure

So much to say, however I am so tired I am not sure how in depth or detailed this post will get.  Lets start from the beginning:

On November 2nd we welcomed Luke Eliot Fisher into this world - 6lbs 7oz and 18.5" long.  He was a little bit early, I wasn't due until December 3rd but came out crying and healthy.  During labor I spiked a fever and was given antibiotics.  Blood cultures were drawn on me and came back negative and my doctor felt that I probably just had a typical virus.  When Luke was born he had a rash on his forehead and chest and when the Pediatrician came to see him the next day she wanted to have some blood drawn on him because of my fever.  So the nurse took him over to the NICU to have the blood drawn and then came back to tell me that she asked the Neonatologist to take a look at the rash and he was being admitted to the NICU!  I went right over to talk with them and find out what was going on and the doc told me that she wanted to get blood cultures and was concerned about the rash, however she did say it looked like a typical newborn rash but she wanted to be sure.  That then turned into the nightmare that we have been dealing with for the past 2.5 weeks.  I ended up being discharged from the hospital without our baby.  It was very upsetting and emotional for me.  It brought back all of the sad and horrible memories of Dylan being in the NICU and I honestly could not believe that it was happening. 

To make a long story short, poor Luke has been subjected to multiple blood draws, IV starts, NG tube feedings(which were completely unnecessary if you ask my opinion!), a lumbar puncture to test spinal fluid and being separated from his loving family.  All of the test results have shown that he also just had a virus, which explained the rash (that had completely disappeared by day 3), that he most likely caught from me during labor.  However, the Neonatologists are being extremely conservative and are insisting that he get treated with IV antibiotics for 14 days just in case he possibly had a bacterial infection (even though all the cultures and tests were negative for bacteria mind you).  It has been very frustrating and upsetting.  We all know that antibiotics don't cure VIRUSES they resolve on their OWN!!! So we have been trying to just wait patiently but it has been very very hard.  We miss our baby and want him home so badly.  My days have been very hectic and almost a blur between driving back and forth to the hospital to breastfeed and trying to take care of Hailey and Dylan and things at home.  I can't wait until the 23rd (this coming Tuesday) - the course of antibiotics will be completed and baby Luke will be all ours!

Now as if my life weren't hectic and stressful enough, on Wednesday of this week I was in the NICU with Luke and my sister was watching Dylan and Hailey.  Dylan had been fine when I dropped him off 2 hours before and I had put him down for a nap before I left.  When my sister went in to check on him she saw that he was waking up and when she picked him up she noticed that he felt very hot and feverish and he was whining.  So she took off his clothes and got some cool washcloths to put on him and he started to have a seizure.  She said it lasted about a minute and his whole body was shaking and he was foaming at the mouth.  She called 911 and called me, luckily I was around the corner and I pulled up just as the ambulance was getting there.  He was taken to the ER and his temp was 103.1.  They determined that he had a UTI and admitted him for the night for IV antibiotics and monitoring.  The only good thing is that they brought Dylan to the same hospital that Luke is at.  So Wednesday night was spent going back and forth between the NICU and pediatrics and making sure both of my precious boys had lots of love.  Dylan was discharged the next day (yesterday) and has been very cranky and tired but still acting like his normal self.  It was a very traumatic experience for him and me.  Our poor little pickle.  I hate to say this but, why did this have to happen?  What did we do to deserve this?  I have always known that he could have a seizure and honestly everyday I think "is this going to be the day?"  It is so scary and I have been dealing with so much lately I feel like I am on the verge of a breakdown.  I can only hope that things will start looking up from here, I can't possibly handle anything else. 

Our pickle man not feeling very well.

Ready to go home!

Ready for Halloween and Therapy Updates

We had a busy week.  It was full of appointments, the pumpkin patch and school parties.  Monday, Dylan went back to the Pediatrician for a follow up weight check and some lab work.  Last month (about 6 wks ago) Dylan was sick for about a week and had lost about 9oz. taking him down to about 15lbs.  For a typical child this would be no big deal but for him it was a big loss, and I was mostly upset because it takes him a long time to gain it back.  So Monday he weighed in at 15lbs 9oz and measured 30" long - he grew an inch in 6 weeks!  The doc was very happy and I of course thought that he would of gained more because he is now eating so much but a gain is a gain and I should be happy.  They also drew labs to see how he is doing on the calcium supplements and to see if they are still needed - I am still waiting to hear the results.

Then Tuesday we finally had our appointment with California Children's Services.  I have been waiting 2 months for this (since we moved).  Mostly it was just a lot of paperwork and questions.  I should get a call next week to have him scheduled for his evaluation with the PT and OT to get a new plan of therapy started.

Wednesday, we had Dylan's new service coordinator come out to the house from the L.A. Regional Center.  She was wonderful and I feel very fortunate that she will be handling Dylan's case.  She is increasing his home therapy from the previous 5 hrs/month to 10 hrs/month and not only will he have his early childhood developmental therapist but also a at home PT/OT and possibly a speech therapist.  The speech therapist may not start right away but she is working on it.  This was all very exciting news!

Then today we had our first visit from Dylan's new developmental therapist.  She was also great and she has actually worked with another child with WHS.  She is the first therapist that I have meet that has seen and knows about the syndrome.  She just loved Dylan and I am very excited to see what she has in store for him. 

We also had a little fun this week - we went to the pumpkin patch  - the kids had a great time.

My little cuddle bug.

Dylan's Tubmobile arrived today - another great therapy toy.  Thanks to Jessica, a fellow blogger, who suggested it.  Dylan really liked it and Hailey had a great time pushing him all around the house.

Then tonight, Hailey's school was having their annual Halloween Festival so we had to go of course.  I do have to say that they were the hit of the night with their adorable costumes - The Rainbow and the Little Pot Of Gold!

In the last week or so Dylan has actually been trying to bear weight on his legs and longer than just a few seconds.  He can stand with his leg braces but they keep his knees locked so he really isn't standing on his own by any means.  We are so happy for this new skill.  Up until now he really hasn't shown any interest in wanting to straighten his legs so I am pretty excited!  Keep up all the work big man!!!  I have to say that the stove top is NOT on, I laughed at Mitch after I took the video and though that maybe he could find a better place for standing work. :)