Urology Appointment

Yesterday Dylan had his follow up urology appointment.  This was his first visit to the new Urologist at UCLA.  It has been a little over a year since he had his last kidney ultrasound and VCUG (which was all done in San Diego with the previous doctor).  The doctor reviewed Dylan's previous films (from last Dec.) and told me that it appears that the VUR (vesicoureteral reflux) has resolved on the left side but is still present on the right at about a grade 3.  There are 5 grades of VUR and he said that Dylan had a mild-moderate case.  He will see us back in one month for a VCUG (a procedure where they inject dye into the bladder with a catheter and see how much of the dye is backing up into the kidneys when Dylan urinates).  This test will tell us where we are at with the reflux and if any intervention is necessary.  He told me that if urine is still backing up he would like to perform a deflux procedure.  This was good news because it is a relatively easy and minimally invasive procedure where gel is injected around the ureteral opening to create a valve function and stop urine from flowing back up the ureter.  This is a short procedure that is done on an out-patient basis.  This was good news to hear because the previous urologist suggested a reimplantation of the ureters which is a full-on surgery.  I will hope and pray that Dylan has outgrown the VUR and that no intervention will be necessary and he can go off the daily antibiotics. 

We also talked about Dylan's hypospadius and undecended testicles.  Unfortunately those will both have to be surgically corrected but luckily it will all be done at the same time.  Right now it isn't urgent to fix these issues and the doctor wants to treat the reflux first. 

On a good side note Dylan weighed in at 17lbs 6oz!  I was very excited because he had lost about a pound and got down to 16lbs when he was sick a few weeks ago and it usually takes so long for him to gain it back.  Whoo Hoo!!!

  Please ignore the messy room in the background.

Sickness and a Stander

It has been a long week and a half with sick babies in the Fisher house.  It all started over New Year's weekend with Hailey having a cough and fever while we were camping.  Then on Monday night Dylan started with a fever and cough.  Tuesday we were off to the doctor's office - Hailey having walking pneumonia and Dylan with an ear infection and cold.  So both were placed on antibiotics.  Then Tuesday night Luke started with a little bit of a cough and that turned into wheezing by Wednesday morning so back to the doctor's office.  Luke was diagnosed with a viral cold and was given a breathing treatment and we were sent home with a Rx for an albuteral inhaler and instructions to bring him back if he had a fever.  Fast forward to Friday - I had a hair appointment (a very important thing) and my mom was watching Dylan (I took the baby with me).  By now Hailey was doing completely fine and back at school and Dylan was still very congested and wheezy but seemed to be doing better than the day before.  I got a call from my mom around 4pm (I was still at the salon with my hair up in foils) and she said that Dylan was wheezing more and more and wanted to take him back to the doctor.  So off she went and they gave him 2 breathing treatments and a shot of prednisone and a Rx for oral prednisone to take for 5 days and a albuterol inhaler that I was to do every 4 hours.  The doctor was concerned with the wheezing but his oxygen saturation was 98% so he instructed my mom that if the wheezing didn't subside by 10pm I was to take him to the ER.  Well 10pm came and I gave him the two puffs with the inhaler (which was kind of a joke - he hated it and even with Mitch holding him down he was thrashing around so much that I was questioning how much of the medication he actually was breathing in).  However, I had the humidifier in his room and he was sleeping peacefully.  Saturday morning he was still fussy but seemed to be ok, but by 1pm the wheezing was back and it was obvious to me that he was having trouble breathing so off to urgent care I went and when we got there his O2 level was only at 93%.  The doctor told me that she wanted to admit him to the hospital for breathing treatments!  I knew that what he really needed was a nebulizer at home so that I could give him the treatments like they were giving him there so I pleaded my case (I am an RN) and convinced the doc to give him a tx and reevaluate.  So once they turned on the nebulizer and the mask was on his face (loud and vibrating which he likes) he was breathing easy again and fell asleep.  After, his O2 level went up to 97%, they also did a chest x-ray, which was clear, so they sent us home with a nebulizer and a Rx for albuterol breathing treatment every 4 hours.  By now I was exhausted mentally and physically.  Oh and I forgot to mention that along with all the days of snot and coughing and crying, Luke was coughing so much that he was throwing up most of his feedings.  And I mean projectile!  I was covered in baby puke and snot for about 5 days straight. 

Well, here we are the following week and everyone is better!  Thank God!  I just hope that Mitch and I don't get it. 

To move on:  This week Dylan's PT brought over a stander for us to borrow and try out.  Now, Dylan is able to stand but he is still a bit wobbly and she thought that this would be great to allow him to stand for longer periods of time.  It's also great for him to be able to stand and play with toys and work on fine motor skills as well.  He did really well with it and was able to tolerate 20 minutes the first time he was in it. 

My mom and I also did some hippotherapy with Dylan.  We are very fortunate to have horses of our own.  Dylan loves the horses and loves petting them and feeling their warm, soft hair.  Today he rode Lily (one of my mom's horses) and he mostly wanted to ride laying down.  It was so cute, he was so happy and was smiling and laughing with every step she took.

I had to add this last pic just because I love it so much.  I snapped it the other night when Mitch was cuddling with the kiddos.

Happy New Year!

Each and every year I make a resolution and they usually are to drink less soda or to work out more, but to be honest I usually never keep them.  This year is going to be different.  I have put some goals out there for myself and I will strive to hold onto these goals as best as I can.  Here they are:

~I will take each day as it comes and not worry about what tomorrow may bring.

~I will not compare Dylan's growth and development to other children with or without WHS.

~I will remember that Dylan is continually making progress (slow as it may be) and not get discouraged when I see or read about other WHS kiddos that are reaching milestones faster. 

~I will remember that Dylan is happy, awesome, determined, a blessing - I will try my best not to be sad because he's definitely not.

~I will remind myself that although being a mother of a child with special needs is not something that I ever wanted to do, nor is it something that I signed up for I know that I can do this - heck after these last two years I can do anything! 

To move on from the seriousness - we had a great but very cold New Years.  We headed up to California City to camp and go dirt biking with our friends.  It was in the 30's the whole weekend but was a very fun trip. 

All the guys getting ready to ride.  They went for a very very long ride and came back numb from the cold.

Dylan was very happy to be bundled up and outside with Daddy.

Dylan and Uncle Eliot

Hailey ready to ride - of course she refused to wear her new cool riding gear and helmet that she got for Christmas.

Dylan with daddy by the campfire.

Lukey ready to go out.

Luke gave us his first big smile this weekend!  He is also two months old today - time sure flies!

This is what we drove home in.  Snow is pretty rare for Southern California.  Hailey was very excited.

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!