Our Little Pickle

IEP Success

2012-02-10T18:23:00.000-08:00

Dylan's IEP went off without a hitch. It was refreshing to go into a meeting and hear about all the things that Dylan can do, not the things he can't. I heard over and over that he was just a delight for them to assess and was as cute as can be with his sweet, happy and easy going personality. I think it really helped that we were all on the same page with regards to Dylan's needs and goals.

The recommendation from the school district is for him to attend a special needs school that has a M.O.V.E. program. The MOVE (Mobility Opportunities Via Education) program is great because the school has standers, walkers, gait trainers, etc... and all of the teachers are MOVE trained. So, throughout the school day Dylan will be placed in a gait trainer/walker to work on his mobility be it in the classroom or out on the playground, they will also work on his other gross motor skills such as pulling to stand, crawling, etc... They also have a Speech therapist, PT and OT at the school that come and work with all the children. It really seemed like the best place for him, developmentally and socially. He would be placed in the orthopedic class for children that are working on crawling and walking. There is a 2:1 student/teacher ratio so I think that he would be well cared for. Now we just need to decide when we want him to start. I still can barely get my mind around the fact that he will be turning 3!

Tomorrow is the IEP!

2012-02-08T22:10:00.000-08:00

Tomorrow is Dylan's IEP. An IEP or individualized education plan establishes which special services a child needs and how those needs will be met in the school system. I toured two schools last week however, upon meeting with the coordinator at the first school she told me that they were recommending that Dylan be placed in a school that has a full time nurse which only gives us one option. Wait, did I hear you correctly MS. Coordinator/Facilitator, ONE OPTION!? Then we were told that this first school only had a nurse on Wednesdays so he couldn't go here anyways. WHAT?! Wait a minute, Dylan does not require nursing care, he is not on medication, he does not have a feeding tube, he does not have epilepsy, why would he need a full time nurse? She wouldn't tell me, only that we would talk about it at the IEP. ARGHHHHH!!! I already feel defensive. I feel as though I am going to have to put on my mommy armor and go into battle. Maybe it won't be that bad? I am going to try to go into the meeting tomorrow with a smile and come out the same way.

Ok, so before I get myself all worked up about tomorrow I am just going to post some random cute pics of the kids from the last week. I will post after the meeting with the outcome. Send me some good prayers. :)

I love this, he just loves his big sis and wants to be where ever she is.

Peek a boo!

Dylan's gait trainer finally came, it only took SIX months! Thanks again to everyone who participated in the fundraiser over the summer so that we were able to get this for him.

Working on some spoon feeding, before this pic he was actually getting the food in his mouth using his spoon. He still would rather just make a mess.

Our little goof-ball

Our little animal lover. Dylan always finds his way over to any furry friend, this is Cowboy, my mom's dog.

Waiting for the PT to come and going through the mail, I think this one is a bill by the look on his face.

Dylan, always the perfect patient.

Lukey got his first haircut this week. This is before...

...and after, thanks Auntie Kerri!

Advice anyone?

2012-01-21T21:57:00.000-08:00

As Dylan gets closer to his 3rd birthday I am getting a little nervous. Dylan currently receives 30 hours a week of in home therapy services through Regional Center, and all of these services are provided at no cost to us. In two weeks I will be attending his IEP meeting for school. After Dylan's birthday on Feb. 20th he will no longer receive therapy through the Regional Center it will all be turned over to the school district. The therapy provided by the school district is not like the kind he has now, it is much less or so I have been told. I know that I have blogged about this before but now that the reality is setting in that my baby will be turning three next month I am kind of scared. To be perfectly honest I am afraid to send him to school. What if he cries? What if they don't know what he needs or wants? What if another child hurts him? He is still such a baby and I am just not sure what to do, not sure what the right thing for Dylan is. The problem with not sending him to school after he turns three is that then he would no longer receive services. The school district only provides the therapy at the schools. I have checked into outside therapy services that we would have to pay for mostly out of pocket because of course the best therapy center is outside of our insurance network therefore we would have to meet the higher deductible, blah, blah, blah... You know how it goes. I am taking a tour of two local schools with special needs preschool programs in early February so I am sure once I see a classroom and the children that he would be with it will help me make my decision. I guess part of me wishes that he could go to the same preschool that Hailey went to two days a week and that it would all work out fine. But maybe I am being unrealistic.

If anyone out there has any words of wisdom for me it would be greatly appreciated.

My handsome man showing of his new haircut thanks to Auntie Kerri.

Kissy face

Dylan's new trick is standing against the wall. We still need to work on helping him figure out how to get back down.

Pretty girl

Cutie pie

Dyl listening to sister's princess music and loving it might I add.

Shocked and Saddened

2012-01-15T11:09:00.000-08:00

As I sit down to write this post I am still at a loss for words. On January 10,2012 (just a few short days ago) a beautiful little girl named Amelia, who, like Dylan has WHS, was denied a life saving kidney transplant because (using the doctor's words) she is "mentally retarded." I don't want to try to summarize her mother's account of that day, so if you would like to read her posting click HERE.
Being a RN and in the medical field for the past 12 years I have never heard of someone being denied a transplant because of their mental capacity. Honestly, it never even crossed my mind that it would be a consideration. How can a doctor be the one who decides who can live and who can die? If this was happening to Dylan I know that I wouldn't go down without a fight. Amelia's parents are fighting for her too and I hope and pray that the doctor and the hospital will change their mind and give her a chance at life. If you would like to support Amelia please follow this link and sign the petition.

Want to see what brought me to tears today...

2012-01-07T20:22:00.000-08:00

That's right, our little motocross champ can stand in his walker all by himself! This is a skill that we have been working on for the last year. I am so proud of our little "pickle." This is just the beginning of what 2012 has to hold for Dylan. Look out everyone, SUPERDYLAN is on his way!

A New Year

2012-01-02T20:53:00.000-08:00

I am embarking on this year with a new found outlook and perspective. I will be counting my blessings and not my problems. I will find joy and happiness in each and every day. I will smile more and cry less.

That's about as deep as I am going to get on this post - I'm to tired with long hours at work, not enough sleep and lots of laundry today I can't get my brain on the blogging track so some cute pictures will have to do. We all had a wonderful Christmas and New Years. It was kind of fast and furious but good. I still can't believe it's all over.

This was Dylan's happy face when he saw his Buzz Lightyear from Santa.

My little Santa's Helper wants to walk so bad - he is close, any day now.

My little loves.

Hailey is showing Dylan his new puzzle.

More Milestones

2011-12-23T22:26:00.000-08:00

This is a quick post because I have to get back to baking. Just wanted to share a few exciting things that Dylan has accomplished this week: First - He can sit in the bathtub without his bath seat! I was always to nervous to have him sitting in the tub without it because I was afraid that he would slip fall over and hurt himself but he has proven that he can do it! He was so proud of himself and had a great time with his brother and sister splashing around.

Second - He is now feeding himself something other than cheese! He is trying to bring everything to his mouth and is doing so great with taking a bite and chewing hard and crunchy food.

Third - He is standing so much stronger and for longer periods of time. He is also able to take about four steps with me just giving him some balance and support around his hips.

We made a trip to the Christmas tree farm this afternoon and got some cute pictures and ended with a visit to Santa.

Is it really almost Christmas?

2011-12-13T15:42:00.000-08:00

Is December really half way gone? Christmas is around the corner, AHHHHH! I am not ready yet. I feel as though I haven't even had time to soak in all the Christmas spirit. When you are a kid it seems like December is the longest month of the year but as an adult it goes by way to fast. I have been so busy working and going here and there with the kids, and everything else that I have volunteered myself for that I've barely had a chance to sing Jingle Bells.

Here is my runny nosed little Dylan ready to spread some holiday cheer with his smile that will light up a room:

Even with a cold he is still happy.

Oh, and we still don't have our gait trainer, this one is the loaner. Don't even get me started on it or I am bound to write some bad words. However, I was told that it was on the way - maybe for Christmas? What a great gift it would be.

Here is my little speed demon Luke. He can run like no one's business in the walker, so watch your toes and shins. He of course was way to busy trying to run after Hailey to look at the camera.

Huckleberry was happy to spread some Christmas cheer in our house too.

Dylan did get his SureSteps though. He picked out ones with skateboarders on them. He's all about being cool with his skater shoes.

Bring on the Holidays

2011-12-04T21:50:00.000-08:00

I started decorating this weekend, Hailey told me I better hurry up so that Santa wouldn't forget our house, so we lugged out all the boxes from the shed and put up the lights outside. It made her very happy to see our house looking so festive. While I was going through our huge box of Christmas lights Luke thought it was great fun to play with them, and I couldn't pass up a moment like this...

This one is my favorite. Me being the total amature photographer, I thought this one turned out pretty darn good. And because Luke and I were having so much fun Dylan and Hailey had to get in on the action.

Dylan has a new trick to show off - he can pull himself up to stand from the stool. He is doing this all on his own, I am just holding his hands for balance! This video was shot by big sis Hailey.

Thanksgiving 2011

2011-11-30T11:24:00.000-08:00

We had our annual trip to Dumont Dunes for Thanksgiving this year. We had a great time until Friday afternoon when one of our friends crashed on his dirt bike and was critically injured. Whenever I am faced with tragedy it really puts my life into perspective and reminds me how thankful I am. I am thankful today to be alive. Life and/or the life that you knew can be gone in an instant, a blink of an eye. We were told that our friend wouldn't make it through Friday night because of his severe injuries and then on Saturday morning he opened his eyes. It was a miracle. He still has a very long road ahead but at least there is hope. I am praying everyday for him and his family and hope that you, my fellow readers will please pray for him too.

I am sorry this post is so somber but I will leave you with this - hug your children and family and tell them you love them every chance you get.

Here are a few pictures from our trip:

My boys, I think they have the same smile.

Luke wants to pull up and climb on everything! He is so proud of himself, I love it.

Sibiling love

The kids with Uncle Eliot in the Rhino.

Right after eating Thanksgiving dinner, we were stuffed!

Lukey and Uncle Chad

Dylan and Luke are ready to ride!

Hailey and Emma

If we could all just be as happy as Dylan

2011-11-12T20:07:00.000-08:00

This was just too cute not to share.

Something so little, yet so BIG!

2011-11-10T21:56:00.000-08:00

Dylan can sit on a stool! I know this may not sound like much to some of you but to us it is amazing! Dylan struggles with low muscle tone and poor motor planning so each and every skill that he achieves can easily bring me to tears. Up until last week he could not sit on a chair without a back or let alone a strap to keep him from sliding down or just falling backwards, but last Friday I guess he decided it was time to move forward. He has been able to sit up on the stool during his infant stimulation and OT therapy hours and still been able to play and interact. We are all so proud of him and I know this new increase in core strength will bring him that much closer to walking one day.

He can also ride on Luke's Dinosaur now, Luke wasn't too happy about that. (sorry it's blurry)

Luke is ONE!

2011-11-06T17:23:00.000-08:00

I know this blog is about my "Little Pickle," Dylan, but this post is about my little Lukey. On Wednesday November 2nd Luke turned one. I can't believe it has already been one year. So much has happened with all our littles. Each of them growing and changing before our eyes. Luke has gone from a teeny tiny baby to a very chunky monkey full of spunk and personality. He has brought our family so much happiness and love. Happy Birthday big man, we love you!

Here are just a few pics out of the 200 I took:

The Cutest Costumes in the World! (well, I think so)

2011-10-30T09:53:00.000-07:00

The Bluebird, The Unicorn and The little Owl.

Just a little sneak peak before Halloween.

Yes, they are all hand made by yours truly (and a little help from Auntie Kerri).

Hailey carved her own pumpkin this year - it was very messy but....

she was very proud of herself.

Look out Martha Stewart!

A Boy and His Dog

2011-10-26T20:50:00.000-07:00

Dylan loves Huckleberry, our 90lb Chocolate Lab. Huck is a great dog and whenever he is laying around Dylan goes right on over to him to give him some love. Sorry some of the pics are blurry - they were moving around a lot.

Huck also doubles as a foot rest.

Pumpkin Patch Attempt # 2

2011-10-22T10:25:00.000-07:00

Lucky for us the Pumpkin Patch is down the road from the horse ranch, so yesterday after exercising Kelsey and Whiskey, the kids and I moseyed on over to attempt to get a few cute pictures with the pumpkins.

Hailey, my little cowgirl - you're the only one who can rock striped leggings with cowboy boots.

Luke trying on part of his costume - costume pics to come, I'm not quite done with them yet. :)

Urology Update:

On Monday I took Dylan back to the Urologist for his follow up kidney ultrasound after the Deflux Injection. Every thing looked good, kidneys appeared normal, so the plan is to discontinue the daily antibiotics and recheck in six months with another kidney ultrasound. We are just on the look out now for any signs of a UTI. Dylan has been on antibiotics since birth to prevent this. I am praying that the injection will continue to work and he can be medication free.

Progress Update:

We are still anxiously waiting for Dylan's gait trainer to come in (hopefully not much longer) but we still have the loaner on hand for practice. He is getting quite skilled in moving around the house and the back yard and he seems to really enjoy being able to "walk" and bump into us. He also got sized for his SureStep orthotics last week and we should be receiving those in another week or two.

I have been working on teaching Dylan how to pivot when sitting. He is doing pretty darn good, all I have to do is slightly move his legs and he will pivot. He seems to do this best when outside on the grass, I don't know why but he always seems to try harder when he is outside. He also has started clapping! I am so happy with this accomplishment, and so is Dylan! Then on Wednesday while working with his OT he signed "all done" at the end of the session! Go Dylan Go!

Just See Dylan

2011-10-18T13:06:00.000-07:00

Don't look at Dylan and see what he can't do but instead look at what he can. Look at all of his accomplishments and not at what a child his age should be doing. Look at all of the joy, love and happiness he has brought. Don't tell me that Dylan has problems, he doesn't! Don't look at my beautiful boy and see a syndrome. Just see Dylan. I am an optimistic thinker. I don't open a sentence with a negative. I know that sitting is a precursor to walking. Dylan can sit, therefore I know that one day he will walk. It may not be in the next few months but I know that he will do it. I know in my heart that Dylan is saying his sister's name "Hailey." Some people may not hear it and maybe he doesn't say it perfectly, but you know what, I know what he is saying and I am so very proud. I think Dylan is AMAZING! You should too.

Being a parent is hard work Having a child like Dylan has given me a greater understanding of life and what it means to love unconditionally. Unless you have a child with special needs you can't truly understand how I feel. My worries are different, my days are sometimes stressful and long. Little things that I see others stressing over seem trivial to me now. It's funny how quickly your life can change. Becoming a mother changed me. I look at my babes and could cry because I love them so much. I am sure all parents feel the same way, but when we were told that Dylan wouldn't live past age two you count every day with his sweet, smiling face as a miracle and blessing. When I hear him shout for his sister " HAAY YEE!" I get a lump in my throat because he wasn't supposed to talk.

It has taken a long time for me to accept the WHS diagnosis, and stop asking why? Last week I was at dinner with my husband's cousin and she shared with me that she believes our spirits have chosen the body we have. Therefore, Dylan's spirit chose and accepted his "special" body and chose me to be his mom. It was meant to be. God gave us Dylan for a reason, it wasn't a mistake. Thank you Sharon. :)

To end this post of rambling here is a cute pic of our very happy boy riding Whiskey with Grandma.

Fall and Some Milestones

2011-10-12T11:56:00.000-07:00

Fall is one of my favorite times of the year and for a few short days here in sunny So. Cal. it actually felt like fall. However, the cooler temperature was short lived and now we are back in the 80's and 90's! Because Halloween is around the corner we decided to get into the spirit and hit a Pumpkin Patch. I told myself that if it gets cooler again we are so going back, mostly so they can wear their Halloween shirts that are long sleeved and I can get a picture. Seriously, who wants to go to a pumpkin patch when they have misters spraying you with water because it is so hot and the kids are fussy and sweaty - not me. We had fun anyway and managed to take a few pics, although they are not the best.

Yeah, my eyes are closed and Dylan wasn't looking but sadly this was the best one with all three kids.

Dylan is our little animal lover and was completely happy when he was petting the little mini.

Dylan loved to play in the hay, Luke on the other hand liked to eat it.

"Who is this guy?"

I feel like a bad mom, even as I write this, but yesterday was the first time I have ever taken my kids to the library. Yes, I know it's awful and I am sorry, but now I feel better because Hailey got her very first library card and checked out some great books (Charlotte's Web and The Mouse and the Motorcycle which we started reading last night). The boys enjoyed playing in the aisles and grabbing books off the shelves.

FYI - Luke is now on the move! He started crawling yesterday, so look out! He has been working on crawling for a while now but he has a lot of weight to move around and it was hard for my chunky monkey.

Dylan says, "get your own book, little brother, this one is mine."

Our little nature lover - Dylan loves nothing more than being outside, especially rolling around on the grass.

Listen closely, Dylan is saying "Hailey!" He has been calling out for her for a few days now and I finally caught it on video - can you say PROUD!

Transitional Meeting

2011-10-06T13:13:00.000-07:00

The word overwhelmed has become a frequent word in my vocabulary these last two weeks. With therapy appointments, doctor appointments, procedures and lice (yes, I said LICE! Hailey got lice from someone at school and it definitely threw me for a loop). Oh, and don't let me forget work, regular "mom" duties as well as a horse who I have barely been able to ride let alone groom (thanks mom for taking such good care of him through all this craziness). But I made it, with only one almost breakdown. Having Dylan's Deflux procedure and his transitional meeting this week added a little too much stress and worry. I try my hardest to not worry and just let things go, but it can be difficult.

Now that Dylan is 2 1/2 we are starting the process of his transition from the early start program to the school age program. School age!?!?! How can they say that a three year old is school age, let alone a three year old that is like a one year old?! It's pretty crazy but this is the way it is done. We talked about where Dylan is developmentally and they gave me some information on special needs preschools. I was told that most likely the school district will recommend that Dylan attends preschool 5 days a week for 3-4 hours a day. I didn't even send Hailey to preschool 5 days a week at that age. The positives are that he will receive daily PT/OT and speech therapy, however, I still cannot even fathom sending him somewhere 5 days a week. Bottom line is that it is ultimately our decision and we can choose to send him where ever we feel is best and as often as we like. We have an awful lot to think about. Once again, can I say overwhelmed! The next step will be the IEP (individualized education plan) meeting that will take place in the next few months.

Even through all the madness of the last few weeks I still look at my littles and feel so much love. They are AMAZING and I don't know what I would do without them.

Urology Update and a Little Vacation

2011-10-04T11:12:00.000-07:00

Yesterday we took Dylan to UCLA for his Deflux injection procedure. It all went smoothly and we were home by early afternoon. I take him back in two weeks for a kidney ultrasound to see if it was successful. The doctor told us he had about an 80% chance of success with Dylan's mild, grade 2 vesicoureteral reflux so we will continue to hope for the best. If all goes well we will be able to stop his daily antibiotics that have been preventing urinary tract infections and it will be one less thing to worry about.

This last weekend we actually had a little fun and some much needed relaxation with a little vacation to Pismo Beach. We take our trailer and dirt bikes and camp right on the beach. Everyone had a great time and the kiddos were little angels.

Getting the bikes ready to go with daddy.

Hailey and cousin Emma - the best of friends.

A beautiful Pismo Beach sunset.

Our happy family.

Luke says, "I'm ready to drive."

Happy as can be playing in the trailer.

I am ready daddy, just get me some boots and a helmet.

Changes

2011-09-16T14:35:00.000-07:00

Changes, milestones, accomplishments, smiles, and laughter. These words describe what has been happening in our house the last few weeks. Each week I notice something new in Dylan, either it be in his trunk stability or overall strength to finger feeding and standing independently (well almost). He is "talking" so much and I believe at meal time he is actually trying to say "more" when he wants a drink or another bite (hopefully I will be able to catch this on video). His receptive language is expanding and he is doing fantastic with his flash cards.

He loves to play with Luke and I just love to watch their interaction.

Luke is now 10 months old and coming in at 23lbs6oz and 28" long! He is doing something new everyday and is babbling up a storm.

Hailey started Kindergarten last week and is growing up so fast, I still can't believe it. She is adjusting well to going to school five days a week but reminds me that it's a long day and that she doesn't get to play as much as she did in pre-school.

I am AMAZED!

2011-09-02T14:23:00.000-07:00

Dylan amazed me at lunch time today. He actually tried feeding himself!!! We are so excited. This is HUGE for Dylan. Until yesterday afternoon, Dylan refused to try to feed himself. He would hold his hands out to the side and lean forward opening his mouth as if to say "feed me." Recently in the last month or so he would reach out and grab my hand when he was ready for the next bite but whenever I would try to put the food in his hand he would pull away. On Wednesday my mom was watching the kids when Mitch and I were at work and she began to brainstorm as to how can we best get through to Dylan with regards to finger feeding. She knows that Dylan has always responded well to sounds, music and noises like clapping, or banging. So she thought what about a clicker? So that each time he brings food to his mouth he gets the reward of hearing the much liked clicking sound. She began working with him yesterday at snack time and he was doing well. He was letting her put the food in his hand and she would help him bring the food to his mouth. Today he did even better. I am still in shock! He actually tried feeding himself on his own! He has never done this before, well, I will let the video speak for itself.

Please ignore my appearance as I had just finished working out.

Blessed

2011-08-30T20:11:00.000-07:00

We are blessed. I have said it before and I will say it again - I have wonderful, caring, loving friends/blogger moms. We share a common bond in that our children have been diagnosed with WHS. We chat on-line, facebook and follow each other's blogs. Most of these friends I have never met in person but I feel like we have known each other for years. They have all been so supportive and comforting to me because they know what it's like to travel this special journey.

Yesterday UPS knocked on our door and had a very large box with Dylan's name on it. Inside was a reverse walker and a set of very small, but perfectly sized Suresteps! These were a gift from Dylan's sweet friend Norrah. Norrah had grown out of the Suresteps and no longer needed the walker, because she is walking on her own, and she wanted Dylan to have them. I feel so very blessed and fortunate to have Norrah and her family in our life. Thank you so much from the bottom of my heart. I hope one day to be able to meet all of these friends in person but for now email and blogging will have to do.

Dylan can definitely rock the pink swirls! The Surestep orthotics are something that I have been fighting to get approved through CCS and have had very little success. They feel that because they already approved his DAFOs (which are also orthotics that wrap around his foot and go all the way up to just under his knee - (that he hates, mind you and cries whenever he has them on) they don't need to approve anything else right now. My position on it is that is, well... lets just say I do not agree.

Trying to see what this is all about. He did really great standing and holding on. The reverse walker will be Dylan's next step after he masters the gait trainer (which we should have in about four weeks). He still needs more pelvic stability and strength but I am stoked that we have one now and don't have to go through the hassle with the insurance company and CCS in the future.

It's been awhile... but we've been having fun

2011-08-25T22:06:00.000-07:00

Can't believe I haven't posted in over three weeks. Sorry, but things have been busy. We went on a little vacation to the beach with friends and had a great time. The weather was great and the kids were actually very happy most of the time. Dylan is now a speed roller and was rolling all over the place to get off the blanket so he could put his hands and feet in the sand. He was so proud of himself. Luke is now nine months old and as big and happy as can be. Hailey is growing up so fast! She is such a independent girl now and as you can see most of the pictures are of the boys because she was too busy playing with her friends to come over and smile for me.

He loves his feet and will hold them all the time.

Big boy standing.

Dylan refused to keep his hat and sunglasses on.

The Jumperoo is pure joy for Dylan.

My three precious pies!

I also wanted to give a little update on the fundraiser. We have just placed the order for Dylan's gait trainer and the PT told us it would probably take a few weeks to get so we are anxiously waiting. Dylan has still been practicing in the one that we have on loan and is doing great in it. He is scooting, forward I may add, all over the place and is occasionally taking reciprocal steps! The forward motion is the most exciting for me to see him do because up until now he would only go backward.

Dylan has also received an ipad from his very generous Papa Bob. It is an amazing device and I am very impressed with all of the special needs apps and capabilities. Dylan really responds to a few of the special games I downloaded for him. It is very interactive, I love it!

Once again I want to say thank you so much for all the support and love you have shown for our little miracle. XOXO

Sneaky

2011-08-01T10:31:00.000-07:00

Check out our sneaky boy. He figured this out all on his own. I found him sitting with his feet hanging out of the crib looking over the side when I went in to check on him last night. I was very excited! GO DYLAN!

Fundraiser Update

2011-07-25T22:15:00.000-07:00

First and foremost, I wanted to thank everyone who participated in the Pampered Chef fundraiser. It was a great success! I am still waiting to hear from the consultant as to how much was raised but I know that we received A LOT of orders all over the country. I cannot believe the response we received even from people whom I have never met, but they were a friend of a friend and heard about Dylan's story and wanted to help. I want to thank you from the bottom of my heart for all of the generosity, support and love you have shown for Dylan and our family!!! THANK YOU, THANK YOU, THANK YOU! We even received numerous donations from friends and family that did not need to purchase any kitchen gadgets but wanted to help. We love you all and are forever grateful. We feel so very blessed to have you all in our lives. XOXO.

I wanted to share this picture - Dylan on all fours! This is a skill that Dylan was able to do a little over a year ago (you can see that post HERE) but then lost it after he broke his leg. It is amazing to see him holding himself up with his arms. I am one proud Mama!

I had to share this video of the kids swimming. Dylan's excitement and happiness is adorable and I love it. This is his response every time he swims.

Here is a little preview of the gait trainer that we are hoping to purchase soon. This one is on loan from Dylan's awesome PT from the Regional Center who comes to our house once a week. She was able to get her hands on one and is letting us borrow it for the next week. Keep in mind that this is his first time in it and I was just excited to see him scooting around in it. I know we have a lot of work ahead of us but I am ready and I think Dylan is too.

Cuties

2011-07-10T20:22:00.000-07:00

This is Luke's new look - tongue sticking out the side of his mouth - very cute if you ask me.

Sorry for the blurriness, camera issues, but can you see that Dylan is actually pushing off his arms! It's a miracle, he is getting stronger!

I also wanted to share that Dylan is becoming a little mischievous lately - which makes me totally happy of course. For example, this morning we were at breakfast with Mitch's parents and Dylan was being very good as he always is, but he was grabbing at everything on the table and dropping things on the floor, then looking over the side of his seat at the menu, spoons, crayons, etc... that he had dropped. He actually grabbed a plate of food, that I thought was out of his reach, and threw it on the floor. He was so proud of himself. And, no, I was not mad, but happy that he did this. I actually said, "good boy" as I was cleaning up the mess. It was very exciting. These words would probably not be coming from the mom of a "typical" 2 year old, but when you have a child with special needs that you were told would have no personality and possibly be "vegetative" times like these are memorable and make me want to call the doctor and say YOU WERE WRONG!

Pampered Chef Fundraiser

2011-07-02T23:42:00.000-07:00

We have been having some difficulties with our insurance and California Children's Services in obtaining a gait trainer for Dylan. Our insurance will only cover a small portion of it and CCS still has not approved it because he is "not taking purposeful steps." (I am not going to get into talking about CCS right now or I will be steaming out of my ears.) This is a very valuable piece of equipment that Dylan greatly needs and will really benefit from but I wasn't sure how we would be able to afford it right now (they are a little pricey). So, I have been thinking about doing a fundraiser for a while but, wasn't exactly sure what to do. Then a couple months ago I attended a Pampered Chef party and the consultant told me that we could do a fundraiser for Dylan. I figured, what the heck, lets give it a try. So, on July 14th I will be hosting a Pampered Chef Fundraiser for Dylan.

If you are unable to attend the party at my home and would like to make a purchase please click HERE and click on shop online then enter my first and last name into the host boxes (Kristy Fisher). A percentage of the proceeds will go directly towards Dylan's therapy/equipment.

Thank you all so much! Love to you all!

Summer is Here!

2011-06-28T16:24:00.000-07:00

Before I start in about summer, I want to say a big THANK YOU to my sister (aka Auntie Kerri)! She made Dylan an awesome tummy time bar. We got the idea from Taylorbar, it is a device that helps keep kiddos that refuse tummy time on their tummies by keeping them from rolling over. Now, I would have purchased a Taylorbar but at $85 it was a little steep so if figured how hard is it to make? Well a few hours of sewing and $7 later we have the DylanBar -

Tummy time is something that we have always struggled with with Dylan. He immediately flips over and now, for the past few months, has been back scooting - which don't get me wrong, we are very happy that he has found a way to be mobile but we still really need to encourage crawling and this might be the way. He has done very well with it so far and is tolerating about 10 minutes at a time. Dylan is very weak in his upper body and pretty much has no muscle tone in his chest and upper arms so it is very important for him to have as much tummy time as possible. I will post a video later.

To switch gears - Summer is here and it is getting HOT! So we have had a great time in Grandma and Grandpa's pool and of course the sprinklers and the puddle pool. Luke and Dylan both love to splash and kick in the water and I think they really enjoy seeing how wet they can get me in the process.

This was how Dylan spent the afternoon in the pool - holding his feet and bobbing all around.

It couldn't be summer without bike riding. What better time is there to learn to ride without training wheels than a warm summer evening? FYI... Hailey learned in about five minutes! Yeah, that's my little pro, I am one proud momma!

Moments

2011-06-18T22:26:00.000-07:00

O.K., I seriously just spent over an hour on a post then deleted it. It was one of those woe is me posts. I am trying hard to keep my New Years Resolutions (you can read those HERE) so as I hit the delete button I told Hailey to grab a blanket and decided to strip my two little boys down to their Huggies and head outside. It was a beautiful day here in So. Cal. and I needed a little slap in the face to get my mind on track. This did the trick...

I want to pinch that sweet little tooshie! Can you say OMG CUTE!

Dylan was not cooperating for my photo shoot and only wanted to lay on his back and scoot around on the grass. And yes, Luke is totally sporting a foe-hawk.

Luke wants to suck on anything and everything, so right before I took this pic he was sucking on Dylan's arm, which Dyl thought was pretty funny.

Oh, how I love these faces. They can make me completely crazy at times but it is all worth it for moments like this. I am asked constantly how I do it all. The truth is I don't really know. I try to just go with it and usually it all works out.

Luke, like a big squishy marshmallow, how you make me smile. You have made our family complete and so happy these last seven months.

This was Dylan's idea of fun - gosh MOM can you stop with the camera and let me swing!

I try so hard in my head to summarize the recent events/moments in our lives and when I sit down to write a blog post I find it difficult when a five year old wiggles my chair. Yes, Hailey, you are the culprit. This past week Hailey had her last day of pre-school. It is crazy how time flies. My baby"graduated" from pre-school! I told myself I couldn't cry because I was not wearing waterproof mascara but I think I did shed a tear or two. Dylan's receptive language is expanding and he now can follow five commands/questions. He also has taken a big interest when Luke is crying in the stroller. He will sit forward and look and reach over the middle of the stroller and put his hand on Luke. It's as if he is saying don't cry little bro, I'm here. I love it! He is also trying more and more to sit up using his arms rather than just doing a big sit up. Luke is sitting up very well and is babbling up a storm. He has the cutest squeal and laugh that melts my heart. He is still not to sure if he is liking the baby food yet and prefers mommy's milk - so for all of you that saw the Michelin Man picture of him and thought - what must she be feeding him? It's all breastmilk (Hailey looked exactly the same).

The Tiny Tigers Cheer Squad - too cute for words. Let's put it this way, their little performance made me cry it was that cute.

I know what you are thinking - Is this post ever going to end?! Yeah, but a few last pictures of my eye goop free boy.

THE END!

Goopy eyes are now a thing of the past

2011-06-14T12:03:00.000-07:00

Dylan went in this morning to have his clogged tear ducts opened. This is a problem that he has had since birth and we have been dealing with watery and very goopy eyes on a daily basis. Some days it is so bad that he gets a rash on his cheeks from all the constant tearing. The procedure was a success! He did great with the anesthesia and is home with little swollen eyes but doing fine. Thanks for everyone's prayers and well wishes. :)

I hate being the squeaky wheel!

2011-06-12T22:54:00.000-07:00

I hate to have to fight for what Dylan needs and deserves. I HATE confrontation. I usually end up getting all red and flustered. I am feeling this way because last week Dylan had his six month evaluation at California Children's Services where he receives additional and much needed therapy on top of his therapy provided by the Regional Center. The great thing about CCS is that they provide therapy services and equipment for the child until age 21, unlike Regional Center that ends at age 3. The eval was conducted by a Pediatrician, Social Worker and an OT.

It started off by the doc saying "so he is crawling and toddling around furniture now, right?" I hate when this happens because instead of me going over all that Dylan has accomplished I feel like all I am saying is no, no, no. We talked for a few more minutes and then he did his physical exam and told me that Dylan barely qualifies for therapy services because he does not have high tone but low tone and to not be surprised if he gets dropped next year! I was shocked and didn't know what to say except "can't you see that he needs OT and PT desperately?" Which he replied "yes, but hypotonia is not a covered diagnosis." All I could say was "are you kidding me!?" I guess the state of California totally disregards a rare chromosomal disorder that causes multiple physical and mental delays because I was also told that they didn't know how he even got approved in the first place.

By now I was already getting flushed and upset so I decided to see what I could get while he has CCS. I told them I wanted to get Dylan a gait trainer, a much needed piece of equipment that will help him learn how to walk. I was told that CCS will only approve a gait trainer if Dylan is taking "purposeful steps," but they could get me a wheelchair. A WHEELCHAIR!!! NO! Dylan does not need a wheelchair he NEEDS A GAIT TRAINER! (Even writing this now I can feel the steam rising from my head.) Why, oh why must I fight for what Dylan needs? Is this how it is always going to be? I hate it! Now don't get me wrong, I have not given up and soon I will be posting a picture of Dylan in his gait trainer.

Now would you not approve a gait trainer for this beautiful little boy who is standing so strong, but instead like to see him in a wheelchair?

Yeah, I didn't think so.

To end this post on a happy note here are some pics and a video from this weekend. It's not the best video because the camera's battery was low but Dylan loved the water slide!

With Daddy

Luke - 7 months old

Not the best pic but you can still see Dylan's very happy face going down the slide with Hailey

Carpenteria

2011-06-06T15:34:00.000-07:00

We took a mini-vacation last week to Carpenteria State Beach. The weather was beautiful and we all had a great time. It was a great way to start off the summer.

Dylan didn't want to stand on the cold sand.

Luke with Great Grandma E.

The boys were chillin' at the beach in style.

Hailey and her best buds - Lila and Siddha.

Dylan and Grandma

Luke was BURSTING from the BabyBjorn but enjoyed breaking mommy's back.

The boys in the bike trailer - they loved rolling around the campground.

My three cutie-patooties!

Watery and Goopy Eyes Be Gone!

2011-05-28T22:12:00.000-07:00

I took Dylan to the opthamologist on Friday to consult about his clogged tear ducts. He has had this problem since birth and constantly has watery and goopy eyes which requires us to constantly wipe his eyes - which he hates! It has caused a lot of additional problems with his facial aversion. Whenever I come close to his face with a cloth he covers his face with his hands and arms. I am a little mad at myself that I didn't get this consult sooner but his Pediatrician wanted to wait and see if he would grow out of it - my though is he would of grown out of it by now so lets fix the problem. It is a relatively quick procedure (about 5 minutes) where the doctor uses a little probe to open the tear duct. The great part is that he doesn't have to go under general anesthesia, they just use a little sedation. This procedure will take place on June 14th and I can't wait to finally see his eyes clear and goop free!

Here are some cute pics from the last few weeks, enjoy!

Playing in the sandbox with his girlfriends.

Cutie patooties!

Swimming with sissy.

Chillin' in the pool.

A New Toy

2011-05-24T22:32:00.000-07:00

Thanks to Auntie Kim and all of her connections we were able to get a Jump-o-lene for free! The kids absolutely loved it and Dylan thought it was soooo much fun. He thought the best part was when Hailey would jump and bounce him all around - he was laughing and smiling so much.

Luke thought it was pretty fun too.

This was Dylan just chillin' and sitting on the grass while I got the Jump-o-lene ready. I could not believe how long he sat there for - over 15 minutes without falling over!

He can stand pretty good too. :)

Mother's Day 2011

2011-05-08T22:44:00.000-07:00

We missed our annual lake trip this year. Things have just been too crazy around here to fit it all in. I did have a wonderful Mother's Day and am blessed, blessed, blessed with the most amazing babes!

Hailey - you made me a mommy for the first time. You are so beautiful, smart, creative, and loving. You are my one and only princess and I love you so very much.

Dylan - you are my little fighter! You have taught me so much about life and love. Because of you I am a better person. Mommy loves you more than you will ever know.

Luke - my chunky monkey. You are my shining light. You are the happiest, most adorable baby I have ever seen and I love you with all my heart!

I am one very blessed mommy! Thank you to my husband for giving me three of the most wonderful, amazing, and loving babies in the world!

Dylan was checking out Auntie Kim's ipad - we might have to save our money for one. Dylan really responded to it. It seems like it would be a wonderful and very interactive toy for him.

OT Eval and Fun at the Park

2011-05-02T20:49:00.000-07:00

Today Dylan had his OT evaluation with California Children's Services. He has had three months of what they call "intensive therapy" that consists of two half hour sessions a week. We decided to focus on oral motor therapy during this time. I am proud to announce that he has met all of his goals that we set for him. Dylan now allows us to actually get into his mouth to brush his teeth and perform cheek stretches. He is now able to chew, bite and can lateralize his tongue to move the food over to his molars. He is able to let us know when he wants the next bite by reaching for the food and/or cup for a drink. These have all been wonderful accomplishments for Dylan and we know that he will continue to move forward with his oral motor skills.

Our next set of goals include him being able to chew harder food such as meat and start finger feeding. We have always had a hard time with the self feeding thing. Dylan will hold the food, spoon or cup but doesn't seem to know what to do with it when it is in his hand unless we guide him. He will usually just hold the food and wave it around and then drop it.  We also want him to obtain lip closure when he drinks from his cup in order for him eventually be able to drink out of a straw. We definitely have our work cut out for us but I know that in time he will accomplish these goals.

Now on to more fun stuff. This afternoon we met my friend Angela and her kiddos at the park. The kids had a great time running around, swinging and playing in the sand. Luke had his first ride in a swing and loved every minute of it. Dylan always loves swinging, especially when the other kids push him, it is very cute.  He smiles from ear to ear and laughs and squeals with delight.  Here are some of the pics, enjoy!

Dyl had to show off his monkey bar skills.

Zoey loves Luke

Happy Easter

2011-04-24T22:30:00.000-07:00

Hailey is 5!!!

2011-04-17T21:15:00.000-07:00

Today we celebrated Hailey's 5th birthday! Her actually birthday was on Wednesday (the 13th) but the My Little Pony party was today. Everyone had a great time and it was a wonderful day. I still can't believe my little girl is 5! Time sure goes by fast!

Luke was tuckered out from the party.

Dylan had fun too and loved being with all the other kids.

I wanted to share another video of Dylan scooting on his back. Now I know that this is not what the PT wants so I keep trying to encourage tummy scooting but she said that we are not going to be able to stop him and she is right! He is all over the place scooting around to get what he wants and tonight he wanted to pet Huckleberry.

Meeting Ashlynn

2011-04-15T17:55:00.000-07:00

The day finally came that we were able to meet Taryn and Ashlynn! Taryn and I first met on facebook about a year ago after she found this blog. Chatting on-line we found that we have a lot in common(and only live about 20 minutes apart) and have been meaning to get together for some time now. I am so glad that we did. Ashlynn, like Dylan has WHS, just turned one about two weeks ago and is doing AMAZING! She is sitting up, pulling to stand and trying to crawl.

It is always so great to connect with other WHS parents. As Taryn walked in my front door I already felt like we knew one another, it was like we were long lost friends. It is always so nice to be able to share stories and completely understand one another. I know that we will be great friends and that we will keep in touch.

Here are a few pictures from today:

Dylan and Ashlynn are a year apart and are as cute as can be together.

At five months old Luke already outweighs Dylan and Ashlynn coming in at 18lbs!

Hailey told me after that she thinks Ashlynn is cuter than Dylan and Luke and reminded me that she still wants a sister. I told her too bad, three are enough for me. :)

My Favorites

2011-04-10T11:58:00.000-07:00

Yesterday I received the disk from Carrie will all of our pictures on it. She did an absolutely AMAZING job and I love all 166 pics. I feel like she captured the true beauty of my babies. Thanks again to Lauren for setting it all up and connecting us! Carrie did a photo shoot fundraiser for her nephew Levi who has Cystic Fibrosis. I was so happy to be able to contribute to "For the love of Levi."

Here are a few of my favorites, enjoy!

More Tricks

2011-04-06T15:26:00.000-07:00

Dylan has been showing off more and more lately and I am so glad I captured it on camera. About a year ago Dylan learned how to raise up his arms when I would say "pick me up." He would do it all the time and then that skill suddenly stopped about 8 months ago. I was so sad, we had worked so hard and I thought that maybe he would never do it again but today he showed me. I am so excited! He is so proud of himself, it's very very cute. You will also see in this video that Dylan has begun to scoot around on his back to get to what he wants. Scooting around on his belly is still something that we are working on everyday and he is very resistant to it but I will take whatever floor mobility he can give me right now. Way to go Pickle!

I also wanted to share these very cute growth charts that I got for the kids. Dylan loved showing off how big he is.

(this photo thanks to big sis Hailey)

Dylan's New Trick

2011-03-23T15:42:00.000-07:00

We have been working on Dylan's receptive language skills for a long time now. Some days are good and others not, but I keep on trying and trying and I know he is going to get it. Recently I have been working with Dylan on recognising different foods. So far he can recognise yogurt melts, graham crackers and his Plum Baby fruit pouches. This might seem like a small accomplishment but to me it's HUGE! My mom has also been working with Dylan on waving and a little game we call "give me your hands." My mom has been working on this new skill a lot with Dylan and he has seemed to only want to show off for her and not me, but today he showed me and I actually caught it on camera.

Things Are Looking Up

2011-03-16T22:03:00.000-07:00

Dylan had his Cardiology appointment today. I have great news to report - his ASD has completely closed!!! He no longer needs to be seen by cardiology. The doctor told me that I can scratch her off my list! This is the best appointment I think we have ever been to with Dylan and the only one where I didn't need to make a follow up appointment. :)

Pediatrician Appointment

2011-03-14T21:11:00.000-07:00

Today I took the boys for their check-ups. Dylan had his two year and Luke his four month. They both did great and are growing, growing, growing. Here is how they measured up:

Dylan: 17lbs 6oz, 30.5" long - this puts him at a little over 50% for weight and 75% for height on the WHS growth chart - our little string bean.

Luke: 16lbs 4oz, 23.5" long - he is at the 50% for weight and only 10% for height. He is our little chunky monkey and looks like the Michelin Man - I just love his rolls.

I love our Pediatrician. She is so caring and compassionate. She always makes me happy when I leave the appointment, always pointing out how proud she is of Dylan. She was very pleased with Dylan's growth and development (and Luke's as well). She was also excited to see the interaction between Dylan and Luke. Dylan loves Lukey and makes it known by vocalizing (sometimes very loudly) and smiling whenever he is near Luke. I too am excited to see the changes in Dylan from having a little brother for motivation.

Dylan is looking like such a big boy now, I love it.

Check out those arm rolls!

Urology and Therapy Updates

2011-03-02T12:36:00.000-08:00

Last week Dylan was back at the Urologist for his VCUG. Last year he had one done and it was determined that he had 4+ vesicoureteral reflux on the right side and 3+ on the left. This time the right side was only at a 2+ and the left was barely a 1+. I was very excited to hear that the kidney reflux appears to be resolving on its own - finally something is going right. The doc wants to wait six months and do another VCUG and at that time if it has not resolved completely he will perform the deflux procedure. The only down side is that he will need to remain on the once a day antibiotics for six more months, but I think we can live with that.

On to therapy. Dylan's therapy has drastically increased this last month. We are now up to 20 hours a month of PT/OT and developmental therapy. I admit that it is a lot at times and can be overwhelming, but I am grateful that all of this was approved and is being provided to us free by the state of California. Three times a week someone comes to our house and twice a week I take him to a medical therapy unit. With three kids and one of them being four months old and breastfeeding it can take some juggling. However, thanks to my mom and my sister I am actually able to fit it all in. It is hard because with school for Hailey, naps and feeding schedules and trying to keep my house somewhat clean it leaves little time for anything else. In the beginning I was worried that this would be too much for Dylan. Some days he is great for the therapist and other days not so much. Last week was a nightmare! He did not want to do any work. He even got so upset during his OT session that I thought he was going to make himself throw up. But then this week - so far so good. He had a great session with both PT and OT on Monday and did very well with the developmentalist yesterday. Maybe we have turned a corner! He has been very very happy this week - cracking himself up all day long, it is very cute.

He was having a great time on his Rody horse laughing and bouncing.

Dylan is Two Years Old!

2011-02-20T23:07:00.000-08:00

Wow, time has really gone by fast. I have been thinking about this post for a while now and I could cry but I won't. :) Preparing for his party today I was thinking about when Dylan entered this world. I was induced at 39 weeks because he wasn't growing as he should and the doctors didn't know why. It was all just so different from when Hailey was born. When I gave birth to her it was like a party. I had my mom, grandma, sister and best friend and Mitch of course in the room with me. I had my other best friend as my nurse (she just happened to be working that day). I had an amazing epidural and remember fixing my hair and makeup right before my doctor came in for the delivery. We were all laughing, crying with happiness, snapping pictures and taking videos. Hailey was placed on my chest right after birth and I looked down and couldn't believe how perfect she was. She breastfed right away like a champ and all of our friends and family came to the hospital to visit and bring flowers and gifts for us. We took hundreds of pictures. It was perfect.

When Dylan entered our hearts it was a different story. I think deep down I knew that something must have been wrong. I knew from my nursing background that unexplained IUGR usually is indicative of something. I wanted to believe that everything would be ok and that he was just going to be small. When I was in labor the setting was very different. It was just Mitch and my mom with me and it was very quiet. When I was ready to deliver I had to remind Mitch to get the camera ready. Very few pictures were taken, we never even got out the video camera because it all happened so fast. I pushed for only 20 minutes and when the doctor told me to reach down and grab our baby I saw his face and I knew. I knew it was something. He wasn't breathing or crying so the nurse took him from me and brought him over to the warmer. She gave him oxygen and suctioned him. I remember her telling me that Dylan had a hypospadius and undecended testicles. All I could ask was "why?" He still was having a hard time breathing so she took him to the nursery. Mitch went with him. My doctor was finishing up with me and told the nurse to send the placenta to pathology and call the pediatrician. The next few hours are kind of a blur. I had had an epidural and my legs were very numb. I remember my nurse telling me that she had to admit another patient and she seemed to be gone for a very long time. My mom and Mitch kept going back and forth from the nursery. I just layed on my side and cried. These were not happy tears. The pediatrician came in and told me that she wanted to transfer him to another hospital because he had a hole in his right lung and needed to be put on a ventilator so he could breathe easier. She anticipated that he would only need to stay a few days and then asked me his name. I said, "Dylan." She smiled and said, "well then I am going to call him my little Dyl Pickle" (hence the nickname). After she left, my doctor came back in and said that he would discharge me so that we could follow the ambulance an hour south to San Diego. I said o.k.

My nurse finally came back in - it seemed like it had been hours and asked me if I wanted to go to the nursery to see him before the transport team came. So I wiped my face and got in the wheelchair.  I remember wanting Mitch to take lots of pictures because I was so scared that Dylan might not make it (I never told anyone at the time but that was the thought running through my head as I was wheeled down the hall). Then I saw him. He had an oxygen mask on his face and he was in the infant warmer.   His color was gray and he had no tone. He did not look like a healthy baby. I remember looking at him and feeling my chest tighten up, it was hard to breathe, I had a huge lump in my throat. It was surreal. I didn't want to cry in front of the other happy dad next to us watching as his baby got the first bath. I kissed Dylan's little hands and feet and told him I loved him and then got wheeled back to my room so I could get changed and packed up. The transport team arrived and brought him into my room to say goodbye.  He was intubated by now and the transport nurse told me they also noticed a sacral dimple on his back. I think I just nodded and said "oh." I was in a daze and feeling a lot of pain. My nurse came in gave me some Tylenol with codeine and had me sign the discharge papers and gave me a hug.  As Mitch went to get the car all the other nurses came over and hugged me and said it will all be ok. I wanted so much to believe them, but I knew.   As we drove to San Diego that night all I though about was that I wanted to go back to a week before when I was still pregnant - everything was ok then, we were happy.

After receiving the WHS diagnosis I thought that I would never be happy again. This was the most horrible syndrome that I had ever read about and I was more scared than I have ever been in my whole life.  I have never cried so hard. I tried so hard to put on a happy face for Hailey but really I was dying inside.

When we brought Dylan home from the hospital a friend of mine sent me a card and she wrote, "you will smile again and you will be happy again. I see lots of smiles in your future." She was right. Dylan is two years old today! I can't believe it. I honestly wasn't sure if he was going to make it to this birthday (because of what we were initially told about WHS). Dylan is AMAZING! We all love him so much. When I cry now they are happy tears. Happy tears and lots of smiles because he is doing things that we were told he may never do. Heck, they even told us that he may never know us or recognize us!  He proved that prediction wrong when he was six weeks old and looked right at us and gave us a big toothless grin. As I put him to bed tonight I gave him a big hug and kiss and layed him down(as I always do) and he smiled and squealed, then sat straight up (this is the first time he has done this in his crib) and my mom and I said, "we're going to have to lower that crib mattress." It's the little things that you really come to appreciate, most parents probably take that mattress lowering milestone for granted but I certainly don't. Today was a great day.

I want to share a few photos from Dylan's birth. I haven't shown them to anyone because it was hard for me to relive that day but maybe now it's time.

In labor, February 20, 2009.

My mom and Mitch

Dylan right after birth

Taking me to the nursery - this was the best smile I could muster up.

After he was extubated and when we learned about his cleft palate - my face was so puffy and swollen from crying.

Today, February 20, 2011 - this is the beautiful sight we woke up to. It has been cold and rainy here for the last few days but this morning the clouds opened up and gave us a beautiful day for a wonderful birthday.

Happy boy with grandma

Opening presents - he was so excited and loved everything!

Our happy family.

All the kiddos.

Happy Birthday Big Man! Everyone loves you so much! xoxoxo

Photo session

2011-02-13T17:58:00.000-08:00

You know when you have it all planned in your head and it seems like it is a really great idea and then you get there and NOPE. When you are trying to photograph kids I guess it never really goes exactly as planned. I have been thinking for a while now about taking Dylan's two year pictures. I have had it all planned perfectly in my head. I wanted him to be sitting in the rocking chair that I had as a child, holding a great big 2 and smiling. The lighting would be perfect, the setting just right. So, because today was such a beautiful day I said "lets go to the park and take pictures." I piled all the props into the truck and head to the park. To start off, Dylan didn't want to sit in the rocking chair, he just wanted to slide out of it. The big 2 that I spent 20 minutes on cutting out of a foam board was a big distraction for him, all he wanted to do was eat it and wave it all around. There was a little bit of a breeze which made his eyes water. Hailey didn't want her picture taken and just wanted to play but after a little convincing I managed to get a few shots. Luke was fussy and wouldn't smile for me. So here are the results of my amateur photo session and I think they are a bit cute :

Rolling and Sitting

2011-02-11T14:00:00.000-08:00

I finally caught Dylan rolling on camera. Usually when I grab the camera he stops rolling and looks at me and smiles. He is getting better and better and rolling more and more to get to what he wants. I can't believe how much he has been progressing in the last month. We have really been seeing a lot of changes in him. This progress comes from long, hard work and it is finally paying off!

This video isn't the greatest because he was tired and it was nap time but I wanted to capture him sitting up by himself on camera and I did! He has been pulling himself up to the sitting position for about a week now and is so very proud of himself.

Fun Pics

2011-02-06T21:34:00.000-08:00

Dylan playing with the big kids on the jungle gym.

He is sitting so good now but still will just throw himself backwards whenever he feels like it so this little wedge works pretty good to keep him from bonking his head.

Lukey is now 3 months old and a CHUNKY MONKEY and as happy as can be!

(Sorry the picture is turned the wrong way, blogger wouldn't let me turn it)

Swinging is soooo much fun!

This is Hailey's new smile whenever I take her picture - I call it the Mary-Kate & Ashley Olsen look.

Jumping is sooooo much fun!

2011-02-02T20:45:00.000-08:00

Oh, our little pickle man, how he loves to jump!

(to all the grandmas that get this post as an e-mail, if you can't see the video in your e-mail just click on the link to the blog.)

Urology Appointment

2011-01-26T12:44:00.000-08:00

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

2011-01-13T16:02:00.000-08:00

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!

2011-01-02T20:22:00.000-08:00

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

2010-12-27T21:53:00.000-08:00

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

2010-12-19T21:51:00.000-08:00

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

2010-12-13T11:46:00.000-08:00

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

2010-12-03T16:43:00.000-08:00

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

2010-11-27T21:14:00.000-08:00

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

2010-11-26T14:11:00.000-08:00

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

2010-11-19T20:53:00.000-08:00

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

2010-10-29T20:46:00.000-07:00

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. :)

Cute pics just because

2010-10-26T22:24:00.000-07:00

Oh my beautiful girl! And my very handsome men!

Dylan says, "I'm getting pretty used to this sitting thing."

Playin' with sissy

2010-10-19T22:11:00.000-07:00

I think it is so cute that my kiddos love to play with each other. Hailey loves her little brother so much and she wants to play with him all day. She is a great little motivator for him too. She is his biggest cheerleader when he is working on a new skill. Recently she had a little homework assignment that asked "what makes you special?" Her immediate response was, "I'm special because of Dylan, and because I am his sister." She then drew the most precious picture of the two of them together holding hands. I almost started crying, she definitely tugged at my heart strings. She is so loving and caring, Dylan is so lucky to have her as his sister.

Earlier today Hailey wanted to play with Dylan in her room. So I brought him in and went back a few minutes later to check on them and I found him covered in about 5 blankets and holding a dolly and other little "beds" for her other dolls all around her room and her on the bed. They were playing school and she was the teacher telling them all it was nap time. Dylan of course was just smiling, talkin' and kicking in delight.

I had to add this pic because this is his new favorite play to chill when I am doing my hair and makeup - the bathroom sink. Usually he will sit up in it but today he wanted to relax and nothing is more fun then tearing up a magazine.

I finally got a call from the Regional Center today and talked to Dylan's new service coordinator. Thankfully they are going to start up his home therapy next week! I am very excited to meet the new therapist and can't wait to get him back to work.

Pregnancy Update

2010-10-13T20:25:00.000-07:00

I figured I would post a little prego update since it has been a while and maybe some of you are interested. I am now 33 weeks along and besides the horrible heat in Southern California that is making me sweat, and the horrendous back pain at the end of the day I am doing well. I had my appointment with the Perinatologist for my follow up ultrasound and besides waiting for over an hour everything went great. The baby is growing right on track and everything appears perfectly normal and healthy. He is measuring in the 40% on the growth chart and his estimated fetal weight is 4lbs7oz.

He was being a little difficult when the tech was trying to get a picture of his face - he kept putting his hand and arm in the way but you can still see those cute lips, little nose and chubby cheeks.

I had to add this pic because it is so cute - our little Motocross Champ with Daddy and Uncle Eliot last weekend.

Sitting Up!!!

2010-10-07T18:32:00.000-07:00

I am so proud right now - Dylan can sit up now for a minute or longer, before he gets distracted and falls over!!! I can't believe it. He is doing so great and feeling so strong. Look out for more good things to come from SUPER DYLAN!

2010-10-06T20:47:00.000-07:00

Not much to report, but I will say that I am still frustrated with Regional Center and California Children's Services because I have yet to hear back from them. It has been well over a month and every time I call they tell me that his chart is still be reviewed. It is hard for me to not get upset because it is not like he is a new case he is just a transfer. Sadly all I can do is wait patiently. I hate for him to be out of therapy for so long. I work with him every day on his sitting, standing, and crawling, etc... He is doing great with eating table food. He now completely turns away from all pureed baby food. I still have not tried hard/crunchy food yet because I still don't think that he is chewing all the time. I notice that he still will mash the food with his tongue and do more of a sucking pattern about half of the time. I am still so proud of this accomplishment with eating, I honestly wasn't sure if it was ever going to be a possibility. He still will not reach out and grab the food off his tray, but if food is falling out of his mouth he will reach up and push it back in with the back of his hand. For me this seems like a step in the right direction. He will hold onto his cup if I put his hands on it first and help him move the cup to his mouth, he will do the same with a spoon. Practice makes perfect right?

Here are just some cute pictures to end this post.

Our little cuddle bug.

Dylan with his new bath seat. He really liked it and had a lot of fun splashing around with Hailey.

1st Haircut!

2010-09-29T16:01:00.000-07:00

Before: Wild hair - we thought he looked like Sideshow Bob from the Simpsons.

After: Looking like a very handsome big boy! Thanks Auntie Kerri!

Back from the Beach

2010-09-23T18:07:00.000-07:00

Our little vacation at the beach was wonderful and much needed. We all had a great time. The weather was beautiful and we spent everyday down by the water.

Now for some updates on Dylan: In my last post I said how sad I was that Dylan hasn't shown much progress in the last few months, well I guess a little break from therapies and appointments was just what he needed. While we were camping I worked with him everyday with his sitting, standing, and even eating more solid foods. He was amazing! He was able to stand by himself with his leg braces on the couch in the trailer looking out the window. He was even able to turn to me when I called his name and not fall over. He is able to pull himself up to a sitting position when he grabs my fingers. I don't even have to pull him up, he is doing it by himself!!! He is still a little unstable when sitting but I know this skill will come soon. This morning as we were packing up he was sitting on the couch and he started to fall to the side and put his hand down and pushed himself back to center. I was shocked because usually when he starts to fall to the side he seems to have no desire or want to try to balance himself and will just fall over. Then yesterday the most miraculous thing happened. My mom and I were down at the beach and talking to Dylan and he was talking back in his usual sounds and then he said "HI" in the sweetest little voice I have ever heard! He has yet to say it again but we both heard him say it plain as day so I am counting "hi" as his first word. It was so amazing to hear Dylan look right at me and form a word I almost cried.

Now I do have to elaborate on Dylan's new skill of eating solid food. For the past few weeks he has been refusing a lot of the pureed baby foods. So I have slowly been introducing him to solid, but soft table foods. I had tried this about two months ago and he ended up choking often and then would sometimes throw up which usually ended up being his entire meal so I felt that maybe he wasn't ready for chewing. He is ready now! His diet now includes: peanut butter and jelly sandwiches, egg salad sandwiches, grilled cheese sandwiches (which I give to him in small bite size pieces), small pieces of cheese, small pieces of fruit, mac & cheese, spaghetti, salmon, tuna, Gerber puffs and yogurt melts. He is doing great eating and he is now actually chewing! Sometimes it takes him a little while but he loves regular food and seems to be over baby food. I am so proud of our little man! He makes me smile every day.

Here are a few pics from the beach:

He loves to feel the sand in his toes.

First time in the backpack for a walk down the beach, he loved it!

This is for all of you that wanted a belly pic - I am now 30 weeks pregnant and feel like I swallowed a basket ball.

My little surfer girl.

At the Santa Barbara Zoo.

I just love those little blond curls coming out of his hat and those sweet baby cheeks.

Fascinated with what is outside.

Finally I post

2010-09-18T22:37:00.000-07:00

Well, it has been a very busy couple of weeks and to top it all off Verizon was just able to get our Internet up and running today so I blame that on my lack of blog posts. We have now officially moved into our new house and everything is coming along. We still have some things to unpack but the majority of it is done. The kids and the dog have settled in great and it is beginning to feel like home. I have started the long process of finding new doctors and therapists for Dylan. I have already found a great Pediatrician that I love and she was able to give me a lot of referrals to different specialists.

Sadly the therapist department hasn't proved to be that easy. I already put in the request for Dylan to be transferred from Riverside county to Los Angeles county and have been told that it could take over a month for the Regional Center to review his file and assign us a new therapist. I just hate waiting that long. I will be honest I have been so busy getting everything together that I have had little time throughout the day to work a lot with Dylan. He has been a little trooper and will sit happily in his jumper or bouncy seat watching me while I unpack but I have yet to really put in any good therapy time. I feel so guilty because of it. It has all been really stressful for me (not to mention that I am now 29 weeks along and getting pretty uncomfortable). I have promised myself that starting this week we are back in mommy PT/OT business!

No real big changes with Dylan these last few weeks. He was sick this week with a cold/cough/rash/fever that left him pretty unhappy but he is on the mend now and back to his happy self. I am a bit sad that I have no new progress to report but I know in my heart that he will start making more strides in his development in these next few months.

Hailey has started her new Preschool and loves it. She is so proud to be in the Kinder-Prep class, she feels like a big kid now.

And because I am completely crazy the kids and I are heading to the beach for the next few days for some much needed relaxation. I say that I am crazy because it feels like there is still so much to do at home and now I am packing up to leave. I promise to take lots of pics and post when I get back on Thursday.

18 month check-up

2010-08-25T13:57:00.000-07:00

Dylan had his 18 month check-up with the Pediatrician today and here is how he measured up:

Weight: 15lbs 9oz - 70% on WHS growth chart, this is a growth of 9oz in 2 months, not too bad for Dylan.

Height: 29" - 70% on WHS growth chart, this is a growth of 1" in 2 months.

Head Circumference: 16.25" - 50% on WHS growth chart, this is only 0.25" gain since 2 months ago, Dylan's head has always been the slowest to grow.

I am very happy with this news. Dylan is still eating like a champ and we load all his food with Duocal and/or coconut oil to add more fat and calories and he also gets 6 oz of Pediasure a day to balance out his diet (which I wish he would drink more of, but that's one thing, you can't force him to eat or drink if he doesn't want to). I did think that he had gained more weight because he just looks so big to me but I am always happy with any increase in weight or length.

He loves to play with the paper on the exam table.

Big boy in the hamper!

Standing so big and strong.

Moving

2010-08-24T17:20:00.000-07:00

Sorry for the lack of posts but life has been a bit hectic around here. We closed escrow on our new house last Friday and have been working on it, packing, moving, etc... We are very excited to be moving back to the suburbs of Los Angeles to be closer to family and friends. My mom's house is literally 2.2 miles away (which is a lot better than 100 miles) and that definitely brings a big smile to my face.

Dylan has been doing great. He has figured out how to bounce his bouncy seat and will bounce until he is sweating. He is still working on sitting and can balance for a while if we put him in the right position but we are still having trouble with him wanting to throw his body backwards. So, I am working a lot with him on the yoga ball to strengthen is trunk muscles. He can stand by himself with his leg braces on and has been "talkin" up a storm - no words yet but he likes to make a lot of noise.

I take Dylan for his 18 month check-up tomorrow morning and I will post with all the updates.

Here are a few pictures of our new house that we hope to move into labor day weekend:

Dylan in his new room - he likes it!

Me and Hailey watching the boys all hard at work.

Dylan bouncing and talking during the construction.

Therapy with Dana

2010-08-11T15:25:00.000-07:00

If I have said it before I will say it again - Dylan has the best therapist. Dana has been with us since Dylan was just about two months old. She is amazing! She brings over the greatest toys and therapy aids and the best part she leaves them with us to use between sessions. She is always coming up with new and creative ways to get him to work his muscles and she has taught me so much. Thank you so much Dana. We are going to miss you terribly when we move in a few weeks.

Here are some pictures and videos from today:

Dylan is getting stronger and stronger every day. Today he stood in the hamper and "rode" around for over 25 minutes without help. I was shocked, I can't believe the change. Just yesterday I still had to give him hip support when standing.

This is not the best scooting video because it was at the end of the session and he was tired, but he still made his way around the entire kitchen.

We all should enjoy the small things...

2010-08-01T15:01:00.000-07:00

This past week has been emotional for me. The things that have transpired have left me feeling very sad, upset and confused. The person that has caused this is someone very close to me and my immediate family and has chosen to exclude us from his life. Typical Kristy would stay up late worrying about the situation and try to think how I can make it all better but, after Friday and Saturday - FORGET IT, I have already tried too hard. I have done nothing wrong and I refuse to enable this to go on the way it has. In the long run this person has made a decision for his life and there is nothing any of us can do about it so I am going to stop losing sleep over it (because I have already lost too much).

I am moving on and looking forward. Life is to short to let these things get in the way. I have so much to be happy and thankful for. I have a wonderful family, amazing husband and kids, fantastic friends - truly a great life. I have a mother who is (well it's hard to find the right word) the most loving, compassionate, giving person I have every known. With out her I don't know what I would do.

A squeeze from Grandma always brings a smile...

...and even her french toast at the crack of dawn on a Saturday morning can make every thing seem better. Even the stool she bought especially for Hailey in the kitchen can be the most exciting thing in the world to a four year old and bring hours of smiles. Thanks Mom/Grandma.

More to enjoy are the summer afternoons at Grandma and Grandpa's house for a swim and time with extended family...

The feel of the water at the perfect temperature on a hot day can make anyone relax...or jump right in...

These are the times to be happy in life.

Then after a long, fun day some people just can't help themselves but fall right asleep in the pool cradled in the big, strong arms of Uncle Paul and...

...how nice to then get snuggled by mommy and wrapped in a warm blanket for a little afternoon nap on the grass.

A great end to a wonderful day.

My message to everyone today is to stop and enjoy the small things. If you miss out on these few happy moments in life you will never appreciate what is truly special. Love to you all.

Dana Point Beach

2010-07-26T14:34:00.000-07:00

We had another fun weekend at the beach. The weather was great and the water was actually kind of warm. Hailey had a great time playing in the water and building sand castles with My Little Ponies on top and Dylan had a great time holding the shovel. Dylan loved the sand and every time we laid him down on the towel he would scoot and/or roll his way off of it until he was back on the sand. It was very cute until he would get handfuls of sand and then put his hands near his eyes.

I had to add another scooting video because he is doing so well with it. As long as he has something to push his feet against he can scoot all across the living room.

Scootin' and Swimmin'

2010-07-19T13:59:00.000-07:00

The weather has been so warm here that I thought it would be more fun to set up the water-way pool outside than in the bathtub. The kids had a great time and Dylan splashed and kicked for over 40 minutes. He just loves the water.

This video was taken today with Dylan's therapist. Dana brought over a scooter board on wheels and we first thought that maybe he wouldn't be ready for this, but he proved us wrong very quickly. He was doing so great scooting all around the house following Hailey. Dana and I were crying because we were so excited. Keep up with all of those accomplishments little man - we love you!!!

Sitting, Jumping and Rockin' on all Fours

2010-07-16T20:54:00.000-07:00

I love that smile, he is sooooo excited.

Victory! Dylan has been able to hold the sitting position for about 15-20 seconds for the last few days. He tends to get a little distracted and will start to look around and lose his balance. He is getting stronger everyday. We are all so proud of him. :)

Today Dylan finally figured out how to jump in his jumper. Before he would just rock back and forth, but after he saw Hailey jumping he thought that looked pretty fun too. I am so excited that he finally wanted to push off with his feet and use his leg muscles.

This video was from the other night. He is slowly regaining his upper body strength since the body cast was removed and now every time we practice the crawling position he just wants to rock back and forth. Way to go Pickle - we love you!

Some days I forget...

2010-07-12T22:28:00.000-07:00

Most days I seem to forget that Dylan has WHS. I can go on about my day as if nothing is wrong or as if nothing is different about my life. Then there are other days when I seem to be reminded constantly. Even being pregnant again and knowing that everything is "normal" with this pregnancy makes me worry about our upcoming addition and the impact he will have on Dylan. I find myself thinking, "how soon will the new baby surpass Dylan in growth and development?" I am reminded when I am out and about with him and someone approaches the stroller, talking to him and he looks off the other way, not able to engage at all. I usually say "oh, he's just tired." They then smile and walk away. Even when I am around friends and family I find that the conversation usually shifts to how Dylan is different. I know that they don't mean any harm and love him terribly, but I wish that everyone could just accept that YES his head is a little flat, YES his eyes are always goopy and tearing, YES he may not respond to everyone, YES he is tiny, YES it is difficult to feed him, YES he is floppy but please try to remember that those comments hurt me and make it a constant reminder to me of Dylan's syndrome. It's definitely not easy and I wish everyday that Dylan was born with all of his chromosomes intact but there is nothing I can do to change any of it. I wish that we could all see past it but I know that this is probably not possible. I seem to find myself deeply saddened and in a way depressed by all of this and I wish that I would feel differently and that the sad days would just go away.

I wish that the title WHS would release me from all of these sad feelings. I want to live life happily without this title hanging over. When he was first diagnosed I remember feeling like I was dying inside. My heart was so broken I didn't know if I would ever recover. I couldn't look at Dylan without thinking about WHS. I know now that I will always be aware of its presence in our life and that's o.k. because there is no changing it. WHS has brought a new meaning to my life - it has awakened me to a life that I never imagined I would have to live. This has been a good thing.

I don't want our family to be looked at as being "different," so that is why I can usually brush off comments, questions or looks and pretend that it doesn't bother me. I wish that I could just say, "yeah he has WHS, so what" and move on. I think that I am finally getting to that place but, it's taken me a long time.

Dylan is now 16 months old and he is my little ray of sunshine. When he smiles and his beautiful blue eyes shine he can light up a room. When he squeals with delight and kicks his legs and flings his arms so hard that his whole body jumps it makes my heart go pitty pat. When he is working on a new skill or trying to regain an old one that was lost I can see the determination in his eyes. When his sister hugs him so tight and kisses him so hard that I am afraid he is going to cry or choke, but instead he just gives her a big smile and it makes me smile too. He has endured more in his 16 months than most people will have to in a life time but I always find him in his crib smiling and happy in the morning. He is so amazing. He has made my life so amazing.

Having my babes has been the most wonderful thing to ever happen to me. I am completely grateful for my fantastic life. Sure there can be a lot of rough spots but the beauty of life always seems to overshadow. I will try to remind myself of this the next time I have these sad feelings (who knows this could happen tomorrow) and remember the ultimate beauty that my babes bring to my life.

Ultrasound Pictures

2010-07-06T18:57:00.000-07:00

Baby face and part of an arm

1st footprint

Today was my formal ultrasound with the Perinatologist. I am now 18.5weeks and everything is going smoothly. The baby is measuring right on track and everything appeared to be fine. The doc looked at everything extra close just to be sure and he is confident that this is a healthy baby. I apologize for the quality of the ultrasound pictures but we still do not have a scanner and for some reason I have just never gotten around to buying one.

Leg Braces and a Growing Boy

2010-07-03T11:49:00.000-07:00

Dylan got his leg braces yesterday. I still need to find him little shoes that will fit over them so he doesn't slip. He did pretty good with them this morning. He is tolerating standing for a few minutes at a time and then he needs to take a brake. They only need to be on his legs when we are working on standing, so my plan is to work with him 3 times a day so that he can build up his strength and tolerance. Hopefully we will only need to use these for a few months and by then with the Vitamin D supplements and weight bearing his bones will be strong enough to support him on their own.

Dylan also had his 15 month check up with the pediatrician - he is 16 months now but his appointment was delayed because of the body cast. Here is how he measures up:

Weight = 15lbs 1oz!!! That is a gain of 1 lb in a month, this is a huge gain for Dylan. He has been hovering around 14lbs for the past 3-4 months and I never thought the day would come when the scale finally said he was over 15lbs. That brings him to the 70th percentile on the WHS growth chart.

Length = 28"!!! This is a growth of 2" since his last check up, 60th percentile on the WHS growth chart.

Head = 16" - not a huge growth here but still a gain of 1/2" since the last measurement bringing him to the 40th percentile on the WHS growth chart.

The Pediatrician thought that he never looked better. She was so proud of all of his growth and development. It was a good appointment, I walked out of the office with a big smile on my face. Way to grow Dylan!

Happy Days

2010-06-27T19:59:00.000-07:00

Dylan is slowly getting back to his normal, happy self. He is still a bit on the floppy side but everyday he is tolerating sitting for longer periods of time and he is rolling up a storm. He is also very happy to be back "swimming" in the tub.

We decided to get away today and head to the beach. We had a great time. Dylan was squealing with excitement when we got down towards the water, it was sooooooo cute. He loved feeling the sand with his hands and feet and actually tried to bear weight on his legs when I put his feet on the wet sand. This is the first time he has done this since before the fracture. I was very excited to say the least.

Baby toes in the sand, what could be cuter?

The cutest kiddos in the world!

I had to add this video because tonight when I was feeding Dylan dinner he decided to blow kisses to me, I was almost crying, it was just too cute.