tag:blogger.com,1999:blog-51709610259441461542024-02-29T00:25:37.572-07:00Because Miracles Happen"The child must know that he is a miracle, that since the beginning of the world there hasn’t been, and until the end of the world there will not be another child like him.” Pablo Casalsnancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.comBlogger1130125tag:blogger.com,1999:blog-5170961025944146154.post-43657826072767610082016-04-09T01:42:00.002-07:002016-04-09T01:42:47.214-07:00And update- Because catching up is a joke! Soon after my Walk Dallas was laid off from is Job. It was a start up company and there were only 4 employee's. The CEO/Owner decided that he didn't want to fund the project anymore and he just stopped putting any money in it. So we were off on a job hunt at the MOST horrible time of the year. No one wants to hire a App developer at the end of the fiscal year. Everyone picks up their hiring at nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-21862171428425471152016-03-10T23:37:00.001-07:002016-03-10T23:37:18.510-07:00Hydrocephalus Awareness WALK Phoenix 2015*During Spring break I thought I would try and catch up. To bad we started off spring break with Influenza A. EVEN with a flu shot, I have 2 sick kiddos. So we will see what we can catch up on.*
The Hydrocephalus walk was a great success. I wanted to make sure that there were some good photos of the actual walk and not just the prep so that I can make sure that I remember there is an end in nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-9245794049645939852015-12-28T01:33:00.000-07:002015-12-28T01:33:02.827-07:00HydrocephalusThis year I was asked to Chair the Hydrocephalus walk for the Phoenix Area. I had no idea what I was doing. I didn't have a committee and only had one other person that I was working with. We didn't really " Work" together. It was more her telling me what I wasn't doing right and her doing stuff that I didn't know about. But in the end we got what we need and we had an amazing event.
Supportingnancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com2tag:blogger.com,1999:blog-5170961025944146154.post-41712294727796889072015-11-14T01:42:00.000-07:002015-11-14T01:42:01.390-07:00October in a RushOctober was the longest month but fastest month. It was INSANE. The first thing we have to do is look for a costume. So we headed to the "red store" aka Target. The Halloween store was not up and going this year. So we did the best we could.
We tried on Hot dogs, pizza, bananas, gorilla's and weird gross stuff.
The costumes were FUNNY. Ty looks great in pepperoni but he said thatnancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-75923250470967053172015-11-09T00:58:00.002-07:002015-11-09T00:59:36.795-07:00Tyler turned 10!!This is so so bad. Tyler had a birthday and we didn't even take a single picture. So I guess there is no awesome photos that showed my sweet boy turned ten. So a run down of Tyler right now!
So here are 10 interview questions about Tyler:
1. My favorite Color is: RED
2. My favorite food is: Pizza
3. My favorite show is: Paw patrol, Peppa Pig, and Youtube video's like Crafty Carol and Cool nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-17538929418523163332015-11-02T23:44:00.001-07:002015-11-02T23:45:15.880-07:00Prematurity Awareness-2
These tiny babies are not just tiny, they are at high risk for major complications. Do what you can to know the signs and symptoms of preterm delivery and get help. Help those babies make their 40 weeks.
nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-45851569696169263902015-11-01T23:13:00.000-07:002015-11-01T23:13:14.898-07:00Prematurity Awareness MonthThe month of November is prematurity awareness month. Because it is something that we deal with EVERYDAY we wanted to share again this year, facts and figures and life with prematurity. Although we are playing catch up for the month of October and we have a lot to catch up on, we are happy to post our facts.
Day 1:
Tyler falls into the Extreme Preemie. He was known as a micro preemie. He nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-60259992709598060032015-11-01T00:52:00.000-07:002015-11-01T00:52:29.137-07:00The Catch up- WOW, did I miss 2 months or WHAT!
I guess when you get to busy and in over your head you don't know what to do with your nights and you don't document a dang thing.. Whoops.
So here is a overview to catch up. November is a big month full of Thanks and prematurity ( not thanks!) but we have to celebrate something. So education and love is what it is. Ready or not, here is the ENTIRE month of nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-17930288253911158392015-09-09T23:39:00.000-07:002015-09-09T23:39:44.840-07:00Irrational FearOne of the most common PTSD symptom is this strange Irrational fears. Ones that have happened, you replay and your fears are easily understood. But other ones are just strange.
One irrational fear I have is that Tyler will just not wake up. You know, not that he isn't taking such a load of meds that it "could" happen. A fear that his bus will have an accident. He will be unable to get home nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-78128859744443825262015-09-08T01:31:00.000-07:002015-09-08T01:31:08.750-07:00Therapy and TherapyWe have finally gotten a grove down with all of this rehab stuff. To say that it is expensive and hard is far beyond an understatement. It might be the understatement of the month!
While having a major issue with scheduling at the rehab department and having to pull a momma bear out of her cage, we got a few things back on track.
So PCH has several locations around the Valley. One is in the nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-43578465068646729942015-08-09T23:50:00.000-07:002015-08-09T23:50:14.152-07:004th Grade and Pre-kWOW. I am only like a month behind.
Ok not really. But enough.
Tyler started school this year before AUGUST! It was a dream come true! His casts came off, his new braces were fitted and his clothes were purchased. We had a bunch of new shorts that he got last year at the end of the year so I put them away in hopes of not having to purchase anything. But sitting on your butt eating Totino's nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-13835018309029189692015-07-25T23:30:00.001-07:002015-07-25T23:31:08.263-07:00Learning to Be Brave ..... AgainAfter getting Tyler's casts off we went straight to get his braces. Brett asked us to bring in his loaner walker so that we could see if there was any sores on Tyler's feet. As he cautiously stood up (complaining as he went) there was a huge rush of relief that he was standing. But a huge disappointment but mostly sadness, came nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-66472807303577257162015-07-18T01:39:00.000-07:002015-07-18T01:39:14.670-07:00Thank you Nike!Dear Nike,
A few days ago, I opened up my Facebook to see an announcement and an amazing video of a shoe that is coming out in your newest line. From a mom of a child with Cerebral Palsy and who frequently has to purchase shoes to fit over a pair of AFO's, I was thrilled to see that you partnered with a brilliant young man, and successfully put out a pair of shoes that was marketed nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-91455971804487350772015-07-15T02:07:00.000-07:002015-07-15T02:07:42.816-07:00My baby is 4Grayson turned 4 on Sunday! I can't believe the little boy that we never thought we would have is now 4!!!
Grayson LOVES all things cars and transportation and all things fire trucks or police officers. So we decided that we would have a birthday party at the local fire house. We figured he would be a great party to have cake on the back of a fire truck. What 4 year old wouldn't love that!
nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com1tag:blogger.com,1999:blog-5170961025944146154.post-90279360467404123172015-07-12T00:08:00.000-07:002015-07-12T00:08:54.618-07:00Cast RemovalWe got our casts off!! Hooray! The summer has been SO long. To top it off, Grayson is low on Iron. So the last few weeks have been extra hard.
We got to our appointment and got right in. We visited the casting room with Adam, the ginger casting dude. He was happy to see us with no more mold on our feet. He was especially happy that no more water was in our around our casts.
And the sawnancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com2tag:blogger.com,1999:blog-5170961025944146154.post-15133380749348845082015-07-07T22:35:00.000-07:002015-07-07T22:35:44.722-07:00It's not easy being green....Ty's feet had a rough go for a few weeks. Something about his feet were making a HUGE stink. We could smell him clear across the room. They were so gross. We tried everything we could. We even put him in his cast galoshes and put him in the tub and SCRUBBED... But we might have made the problem worse.
A few days after the big scrub down the smell got even worse. With a phone call to a friend in nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com1tag:blogger.com,1999:blog-5170961025944146154.post-40078395641841373282015-06-29T00:28:00.000-07:002015-06-29T00:28:59.920-07:00Playing with HydrocephalusSince the beginning of the year I have been diving into lives of moms of kids with Hydrocephalus. When I was asked to be the chair of the walk and I went back East, I met an incredible amount of mother's who have hydrocephalus first on their list of things that can go wrong in their lives. I has forgot how cerebral palsy has engulfed us, and our life really does revolve around that, nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-64455873941276250362015-06-24T02:55:00.001-07:002015-06-24T23:14:59.686-07:00Longest MONTH EVERThis has been the LONGEST month in forever! At first the days went by forever slow because Tyler could do nothing. Then he could want to do something. Now he WANTS to do things and he can't. When he tries and can, we wear it out. Meltdowns are plenty and loud and hurtful too!
So here it is in all it's glory~
Car rides were REALLY hard and we couldn't stay awake....... ever.
Wenancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-35570384701846133032015-06-08T23:59:00.000-07:002015-06-08T23:59:12.011-07:00Recovery
Getting Tyler home was so nice. The day we got him home, we were still figuring things out and Grandpa had to leave to go home to our grandma. We were saying our prayers for the night with Tyler and he was asking to please bless our "Creaky Grandma who is awesome and old." We all busted up a bit. Poor lady. She really does feel old.
Grandpa was sad to go, but Grayson was pretty sad too. He hadnancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-69902006928319401872015-06-03T23:13:00.001-07:002015-06-04T00:00:43.919-07:00Happy Anniversary
3,652 days
315,532,800 seconds
5,258,880 minutes
87,648 hours
521.71 weeks
10 Years married.....
Tonight we were all in Tyler's room giving him a little bath and looking at his battle wounds. As Dallas was holding down Tyler's legs and Grayson was giving him a kiss, I was wiping off the iodine and and hoping to curb the itching, I looked up into this sweet mans face and saw nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-26042015870317119632015-06-02T00:05:00.000-07:002015-06-02T00:05:14.247-07:00Busy Bee PreschoolSince Christmas we enrolled Grayson in the cutest little preschool. The teacher was a lady named Brittany. Miss Brittany had her hands full in the afternoon, and she had a class full of only boys. And the boys are all close in age ( like 3 weeks tops!!) They all love paw patrol and they are just super super cute kids.
We have LOVED Miss Brittany. I love her so much she as become such a nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-19924750232336235102015-06-01T00:50:00.001-07:002015-06-01T00:56:36.498-07:00Day 4- Monday- Memorial Day May 26Monday was the big day. My dad came up as usual but I was not going to be going home until we got everything we needed done. I needed to talk to the Doctor to get all the information I was going to need to get us home and what was going to happen at home. We needed to get him up and going and I wanted to see him off his electronics. The iPad was a great gift that made it so he survived his nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-74662866528656574082015-05-31T23:56:00.000-07:002015-05-31T23:56:45.420-07:00Day 3- Sunday May 24thSunday was just a long day. With Tyler still on an epidural and continual pain meds he had a catheter in and he could literally not even feel his feet. Once again my dad got there bright and early to spell me off. It was seriously the best thing we have EVER done. It helped me be a lot less emotional but I was still pretty dang emotional.
My dad came up again in the morning to stay with nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-52859920557314954132015-05-31T23:22:00.000-07:002015-05-31T23:34:07.842-07:00Day 2- Saturday, May 23rdThe first night was such a worthless night. I was so thankful to have my dad walk in VERY early in the morning to sit with Tyler. I didn't even care that I didn't get to talk to the doctors and the only thing I wanted was my bed! My dad was more than willing to sit and watch the worst set of kid hospital channels EVER and hang out. He was also the one that talked to the doctor and was able nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0tag:blogger.com,1999:blog-5170961025944146154.post-66192905897008630622015-05-31T22:59:00.000-07:002015-05-31T22:59:46.211-07:00Surgery Day- May 22Tyler was one of the first cases that day. We checked in bright and early at 7 am at Phoenix Children's Hospital. Grayson stayed home with my dad, who came to help. The surgery was slated to take up to 8 hours. The list of stuff was long and the doctor was doing it solo. We knew all of those thing. So we prepared our self for a long day.
When surgery started, Tyler was wheeled back happy nancyhttp://www.blogger.com/profile/16943446751465263123noreply@blogger.com0