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.
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!
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 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!
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.
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.
