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.