Hydrocephalus

This 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.


Supporting Hydrocephalus has brought me to meet so many moms and other people like us. Most of the people have kiddo's with hydrocephalus weren't born with the condition and have the condition as a secondary to another condition. For us the prematurity and the brain bleeds lead to the diagnosis of the hydrocephalus and the consequences of the hydrocephalus are long reaching. None the less, the feelings of knowing so many kids at one time in Shunt Malfunction makes me kinda nervous. Almost like I can't be friends with them for fear the Shunt Gods will add us to the malfunctioning list!


The handkerchief's that set our diagnosed kids apart were a big part of the reason that we raised money and walked. I am thrilled to have seen such a successful event and to have been on the learning curve to do so.

Hoping that one day, one step at a time, we can find a cure.





A few feet of Shunt tubing was donated from our local shunt manufacturers were donated and I made over 300 shunt pins. I have some more extra tubing and some extra supplies tat I can't wait to cut into. Each ribbon is 1 inch of love that reminds me that we need a cure!



This years walk was a huge success. I can't wait to find a committee that can work with me and we can work to make a major dent in our goal.

Watch out 2016.

More photos to come from our actual walk!!

Therapy and Therapy

We 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 East Valley and really close to our house. When we started this incredible hard journey we had to be open and honest with the doctor about our willingness to rehabilitate. So we basically had to contract to make our appointments and do the time to make the most of our surgery. We had 3 times a week the first month and then down to 2 times a week the second month.  When we were getting close to cast off time I called and made sure we had a place in the East Valley and they said it was fine and no big deal. Call when we had an exact date. I called and low and behold they were full.

SHOCKER- NOPE

So we took what we could and have been driving to downtown for the last month. 3 times a week means we fill up every single week. We miss school and we are late coming home because traffic is TOUGH in the PHX! They also cancelled ALL the time. So the momma bear part was me freaking out because we were going WEEKS in-between. WEEKS! That was not what was agreed on in office. Our therapist is also Dr.A's therapist for her CP clinic so I told them to take it up with her. Low and behold, our therapist got a bit of over time!

But it is hard work. It's a lot of work getting him into the hospital. He has finally started getting heavier over the summer and is much longer than he was. So our ability to just hoist him around is MUCH harder. But he has to work A LOT harder to get moving.

He works his core muscles more than he ever has and he mostly does a good job. Very little complaining. I am sure it doesn't hurt that we have had to start a bribing system. He knows he can ear $2 a therapy session. If he meltdowns at home, or fights or won't do his work, he has to give his money back. He has to pay his tithing out of the money and he has made sure that he counts it each week because he is working to buy a video game ( which he got on Friday!) So with 3 appointments in PHX and 2 appointments at home he can make a pretty penny.

He has done really well and is walking a lot more slowly but more independently. He is also a speed demon when he wants to be. His gait is looking good with his braces on but still pretty similar with them off.

Total kudos to Grayson who spends all 5 of those appointments trying to stay busy by himself. I do what I can to entertain him and Ty's therapist do a lot of including. He also earns a few bucks here and there or a new toy to play with. It helps us donate a bunch to the therapy places that we go to.

Grayson is So SO stinking funny at these things sometimes! Ty spends 5 full minutes on the treadmill. We need to get one of these for our house. He could use it at regular therapy at home!

Photography by Grayson on that one!

Playing Tic tac toe- But they don't understand the rules. Between each turn we have to keep our hands up while on our knees. Tough when you have no tummy muscles. 

Crawling backwards to pick up pieces for the ball runner we were putting together. After it is all done we played for a bit then finished off with a game of basketball. 

Tyler and Menaka. He was telling her a story. He lays on his back and has to stretch the medicine ball all the way to the floor then he can throw it. Sometimes he has a lot to say. But mostly we are just so proud of how hard he works. We are so proud of Grayson for being so grown up about sharing his time. But mostly we are thankful for the people who have helped us get to where we are.


Also, Troop Tyler or Team Tyler is raising money for the Hydrocephalus awareness walk here in the Phoenix Valley. It is being held October 24th in Gilbert Arizona.
Our walk page is HERE! Please sponsor us. You do not have to walk to sponsor. You can pay by check, cash or on the site. Walk for a cure is fully funding research. The Staff at HA is small and they do not make a lot of money. It truly does go to find a cure!! 

It'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 Washington DC a little bird put a thought of infection into my head and I called the doctors office. The doctors office blew me off three times.  Finally the last time they decided that we could come in and they would take a peek and see if maybe his casts had gotten wet or there was infection. I told them the stinky foot was the one where we had done the most work on his feet and his tibia, but that didn't sway them to take me any more serious.

After a convincing 48 hours of waiting ( meaning I called and left a message and it took 2 days to get back to me) I was able to get them to agree to see us right after lunch. The cast dude came in and got us and got us started in taking off the stinky foot to see what was going on.

Dr. Emily was summoned and I joke with her that we smelled funky but come on in... and then the big reveal happened. Tyler's foot had gotten so wet that his foot had some how grown mold all over his foot. Not just mold but black and green mold. It was HORRIBLE.

This foot has the most work done and the most plates and stitches that are under the casts and I was horrified when I saw what was under the casts. So was the Doctor.  She admitted him to get antibiotics for the afternoon while we got his feet dried and scrapped. He was one mad dude. 

The white stuff is the wet feet stuff. The black stuff is mold and dried blood and the green stuff is mold. We cleaned around his incisions. We re taped his incisions and she inspected his foot. She rubbed antiseptic stuff on it stuff on it, waited for it to dry and the other foot was taken off. A small amount of mold was on the other foot and we started the process again. Grayson was there and I didn't get a picture of the other foot but did get a picture of them working on him. 

After about 6 hours we were able to leave and go home. Tyler was put back in casts for the remaining 2 weeks. He opted for Green this time. He said it was for Oscar the Grouch. Not sure that he was really aware that green was GROWING on his feet.  In 2 days we get his casts off and as soon as we get  them off we run down to our favorite orthotic people and recast ourselves for a few minutes while we get our new braces done. Tyler has to stay off his feet until we get our braces off, but we are hoping we are able to at least start moving a little.

At least now we can "legally" have a bath and enjoy a bit of bubble baths while we get ourselves ready for school in 2 weeks!!!

Playing with Hydrocephalus

Since 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, but Hydrocephalus is really a big part of our lives.

So with being the new chair of the walk, I get to have a whole bunch of stuff I don't understand thrown at me to get the walk off the ground. But what I did do, is meet a bunch of women and men that have amazing children who have hydrocephalus, and who want to see a cure. I am one of those women.


Over the past week I was able to meet with a rep from the Codman Shunt team. They came and talked to a support group that was recently started here in Arizona. So far the numbers are small and I would LOVE for them to get bigger and larger and more active here.But the small atmosphere was amazing for talking with the Shunt team.

We had a bunch of shunts and we were able to see how they were inserted and how they worked. We saw what the shunt cards look like and how long they supposedly suppose to be working. Each shunt placed has a rep from each shunt manufacturer there while they put it in. It truly is amazing.

Here are some of the things we saw that night.








All of it was super cool. It was amazing to see what was keeping my kiddo's head working. They also showed us how easy it is to get them clogged.

Amazing!!!!

Please help those who are walking for a cure, find a cure. Bring more advancements to a well needed cause. We love our babies and want their brains to be able to be helped without the scare of shunt malfunction after malfunction!

March Trip for mom- North Carolina- A trip with Hydrocephalus Warrior moms

I was recently appointed to a Position by the National Hydrocephalus Association to chair the National Hydrocephalus association WALK here in the Metro Phoenix WALK. The old walk chairs didn't secure a spot so I am scrambling to find a spot for this year. I sent in an application but haven't heard anything so next week, now that school is OVER, to secure a spot for us to have this shin dig!

I took a small trip to Charlotte North Carolina and met with a few mommas that have kiddo's with Hydrocephalus. I was able to met with 2 amazing moms who have kiddos' that were 25 week preemies. We were insta sisters. It felt so so good to be able to use humor and laughing to get back into the groove of me!!  Sometimes I miss me. The me that has fun. The me that isn't defensive with all the other people in a "support group" that doesn't support, but judges.

We all had some sort of connection around the table. One of us even shared our latest neurosurgeon. He left HER to come to US!! But left US to go to North Carolina! We are working super hard to get Gabby Gifford to come to our walk this year and really make it a good fun walk. But we need to do it at a time that is not hot as Haiti!

We had 2 long days of really LONG and not well put together lectures. But some great after noon activities where we could chat, laugh and laugh and laugh and eat. Then go to bed early. The WORST part.....

DAY LIGHT SAVINGS TIME..... What the CRAP is that .. We woke up Sunday and we had Sprung ahead an hour. Arizona didn't change time, so we were 3 hours different. This waking up early thing, that meant our 9 AM wake up was 6 am in my body. NOT COOL. But totally explained my 4 hour flight home VS the 3 hour flight in.

I was excited to see the boys when I got home. I slept a bit on the plane but was glad to get to Sky Harbor. Nothing was better than being home.

This is what home sweet home looks like!!!!





Oh yes. And we can't forget the temperature difference, now can we!!

Lamictal is my life.....

Trying to gain control of the seizures that plaque my child's body has caused lamictal and neurologist and the idea of a neurosurgeon and any thing else with our brain, has caused me to be exhausted. The lamictal rash was a accidentally overdose and Dr. C feels so terrible. But we waited  2 weeks and started at the bottom rung of lamictal again.  We are starting on week 2 where he gets 5mg every day in the morning. Then we watch. Any time a welt raises or he gets a rash, we go get checked out and we stay a day.

Fast forward to a week after Tyler's stays, Grayson and I checked into the Sleep lab at Banner Desert. They made it sound like a 5 star resort and it was a moldy smelling building with cots for the mom and "breakfast" at like 4 am.

I was prepared for my child to freak out and cry. I explained that it was not like Dr. Henry Hugglemonster ( the oncologist we see frequently) and he sat so still while I read him books and they taped stuff on his face and body. He has to be touching me while he falls asleep so I felt like it took forever for him to be asleep.

Turns out, he slept great. At least on the outside. I don't know what it is saying on the report. But he doesn't like to sleep alone. But this particular night, he did great and slept really well. He only woke up twice.

Between 2 sleep overs at the hospital, I am not on my game this month. I am redoing my final 3 classes at ASU and doing some interning for marriage and family therapy groups. And then apply for graduating. We should be done in not so long of a time.

Some photos... to start off the topic of Craniofacial awareness and Craniosynostosis. It will be a WINNER

Fact:

Hydrocephalus Facts

• Approximately 1 Million people have Hydrocephalus in the US. 

• There are believed to be 180 different causes.

• There is no CURE and very LITTLE research. The NIH spends 60 Cents per person with hydrocephalus per year compared to $300 per person per year with Juvenile Diabetes. 

• It costs the United States 1 billion per year in health care costs to treat Hydrocephalus. 

Please Sponsor Team Tyler for the walk in Phoenix this October. Help us raise awareness for the millions that have this condition. 

Please join Team Tyler HERE and any amount of money you can or would like to donate, please do. In honor of these warriors, please help them fight longer!

September is Hydrocephalus Awareness Month

Hydrocephalus is a condition of the brain that is derived from the greek word "water." Most people know it as "Water on the brain" or fluid on the brain. The "water" is actually Cerebral spinal fluid (CSF)  and it has accumulated in the brain because of a malfunction or defect not allowing it to leave the brain.

There are several forms of Hydrocephalus. The first form is congenital. Meaning that when you go in for that "BIG" ultrasound and they are looking and measuring the head, they are looking for abnormalities in the brain and head size to see if your baby has Hydrocephalus. It is a preterm diagnosis for most if the condition is congenital.

There is also acquired hydrocephalus in which the was some kind of trauma or damage done so that the CSF couldn't leave the brain causing a back up of fluid. This back up of fluid or obstruction, causes the head to swell and can cause blindness and brain damage if not relieved from the patient.

There is also a Normal pressure hydrocephalus that can be a cause of dementia and a few other forms. But the 2 above are most common.

Prematurity and brain bleeds are a huge factor for children to have acquired Hydrocephalus. Tyler was one of those statistics.

They University of Utah 2003 data suggested that 1-2 children in 1000 are born with Hydrocephalus and account for 0.5% of all PICU and neurosurgery unit admissions. It is a rare condition, but  a serious one none the less.

The only way to treat hydrocephalus is with a Shunt. Or a catheter in the brain with silicon tubing that runs under the skin and carries the fluid out of the brain and into the heart or abdomen. The shunt was invented in 1960. Very few major advances have been made to the treatment of hydrocephalus. The course of action is the same as it was SO long ago.

The failure rate of a shunt is 80% in the first year and can malfunction at any given time.

Hydrocephalus is grossly underfunded and research is almost non existent.


Tyler was diagnosed with Hydrocephalus in the NICU in October of 2005. We were transferred to PCMC where Tyler underwent his first brain surgery. He had a reservoir placed where his doctors could take fluid off his brain when it accumulated until he grew out of the condition or he needed a shunt. As time went on, he did have long spaces where we were not pulling off any fluid.

Tyler left the NICU unshunted. In February 2006 he underwent another brain surgery for a condition called Sagittal Craniosynostosis.  About 30 days after that procedure Tyler got very sick. We went by Ambulance up to PCMC where his heart rate was going lower and lower. Finally they did a CT scan and he went in for emergency brain surgery to have a shunt placed.

30 days after the initial placement of his shunt, and after a month of him crying non stop, we figured out that his shunt was over draining. We were immediately taken in and a revision was done on his shunt.

In 2008 Tyler got sick and was sick for about a week until we figured out that the sickness was not the stomach flu and we needed to go back in for another revision. 6 months later, his shunt and broken again and we were back in the operating room.

We have been stable, but every throw up sends me into a major panic attack. I don't know if it means brain surgery, or just a night of vomit. We have since developed seizures and have grown much bigger. But so far the shunt is still working. In the last year we have had a few ultrasounds, MRI's and CT scans where we see all the extra tubing in his belly. We also see the extra shunt in his head that they couldn't get out.

Tyler has slit ventricle syndrome and he is a very peculiar case. His Doctor, Dr. Marion " Jack" Walker, is one of the best neurosurgeons in his field in the slit ventricle department. We feel lucky to have him.

We would love to find a cure. We would love better treatment options. We need more awareness!

 We will be walking this year at the Phoenix walk in October. Please click HERE to donate in Tyler's name!

Bumble Bee Ranch

We have been in a group called HOPE KIDS since Tyler was really little. They even have a Utah Chapter that our cousin Kayden, and Noah are a part of. In Arizona all of the activities are a lot further away than we are use to, but we try to make a few of them.

A few weeks ago we went to the large party at Bumble Bee Ranch.  Where we were welcomed with amazing volunteers and food and lots of fun things to do.

Bumble Bee Ranch is pretty far from our house and took about an hour and a half to get there. And trust me, my children do not travel well. The last ten minutes of the drive were on unpaved roads and that helped with the fun bumping of the ride. But we were happy to get there.

The morning of the event a huge crash shut down the freeway on both sides of the freeway so we even had to find the alternate route to get there. We were rebels!

We got the list of things to do for the day when we checked in and headed over to eat before we got going on events. Some of the things on the events had a long wait and the boys weren't interested so we got their list and decided on what we would do.

Ty wanted to ride the "Bucking Bronco" so we waited our turn on that first. He loved it. Dallas had gone to get sunscreen so that my vampire white children wouldn't get a burn, even with the overcast day! While he was gone we got on but didn't ride. But as he walked up we started riding our Bronco.

Tyler was so excited and loved it. LOVED it. He kept wanting to go higher but they were a bit worried   that he wouldn't be strong enough to hold on much higher. But we tried it a few times. He was so funny. He told them he was flying and he was higher than the birds. He loved it and the volunteers were so good to him.

 Dallas wasn't so sure that Tyler would like it but he did. He loves things like that. Which is a weird, far cry from what he use to be like a few years ago. He is such a brave kid. The most talked about thing that Tyler wanted to do was ride a horse. The first time Tyler rode a horse was with his Grandpa at Wheeler Farm. I always thought that all my kids would be riding their first horse with their Grandpa, but that wasn't in the cards for Grayson.
         
Far off in the field  was the biggest little boy in the world. My little baby was riding a horse. His dad was with him for the first of the ride and we swapped so I could get some pictures of Grayson.
.

Grayson is a pretty solemn kid. He has a great personality but sometimes drawing him out of his shell takes a little bit of work. This horse had him smiling and he was so incredibly sweet with the horse. He kept petting her and saying that she was pretty! He was so, so happy!

He is so in love with doing something like this. He enjoys it so much and it helps me see into this little difficult child. We are definitely looking at ways to keep this kid drawn out like this.








Next up Tyler was determined to climb the rock climbing wall. He of course, knew that he was full capable of climbing clear to the top with no help so off he went. With some minor adaptations he was able to get up as high as I could keep his feet on the handles but he loved jumping down the wall.

I have always wanted him to try, even going into it we knew he would "fail" by most standards. But a little bit up the wall was enough of a win for him and for us.
(Some day I will be super skinny for all the lifting I do for both of my skinny toots. My arms should be like NOT flabby!)
 
Grayson again, loved this so much. He loved being up in the air and as high as he could be. He was not able to climb it all on his own but he also had a good time. This little boy could live outside in the dirt and the gunk and the fun things with horses all day!

Bumble Bee Ranch was a great successful trip. We probably couldn't go much further than that with the boys for a while. Grayson is the WORST rider. We will be looking at medical flights only for a while.

The past almost year, that I have been working with the Mesa United Way has been so good for me, but being with these little munchkins on the weekends has been far more rewarding or as rewarding as helping those in need. I feel like my need for these 2 has been growing with no way to satisfy it. This for sure helped that out.

We had plans the next weekend to do Sky kids, but I got the super flu that as been hanging around our area and hope to be back on their flight schedule in November.

Easter is coming up and as a social media outlet I wanted to just add a quick note of testimony at the bottom of my blog.  The #becauseofHim movement has me realizing just how important family is. Creating this little family of mine and embracing the joys and lows is part of the plan for us. Infertility was not what I had planned and it robbed me of what I thought my family would be. It has even torn apart my extended family. But this is my family and I want them to have the warm, loving and caring things that I can provide them with. Families, They are forever! 

The End Of Hydrocephalus Awareness Month

September is Hydrocephalus awareness month. I haven’t done much this year because it is not something that I like to think about. I hate worrying about Ty and his shunt and a malfunction and right now we are in a very VERY good place. I know that is not always going to be the case so for now we go on as though we have no worries in the world. BUT, I want to make sure that we don’t end the month with NO facts about hydrocephalus.

1 in every 1000 babies have hydrocephalus and is as common than Down syndrome and MORE common than Spina Bifida and Brain Tumors.

It is the MOST common reason for brain surgeries in children. 

There has been NO changes in treatment for over 50 years with no new treatment, or advancement  for a cure.

More research is needed to give better and more positive outcomes for those with this disease/condition.

There is no cure. 

There is no remission. 


Treatment is the same as it was 50 years ago. For every brain surgery your shunt has a 50 percent of failing within the FIRST YEAR of 50 percent.

If you were to buy a car and have it fail within the year the company would be out of business, but unfortunately, that is what these kids have to look forward to.

We will be participating in the hydrocpehalus walk in November here in Arizona and will be doing what we can do collect money for hydrocephalus.

We love our Brain baby. We wish him well with his shunt and are so happy to be in the place we are. We are still on edge when we start showing symptoms of malfunction, but we know we can do hard things.

We are proud of how well Tyler does when he is in shunt failure and how well he bounces back. We are proud of how well he handles the adversity that is put in front of him. He has so many things stacked against him and he always, ALWAYS, does his best.

A huge shout out of love to our favorite Neurosurgeon in the entire world. Dr. Walker. He has always been Ty’s biggest fan. And a HUGE shout out to Dr. Elton who decided to desert us here in the dessert and introduce us to Dr. Shafron who takes GREAT care of us and is a great help when needed.

Thank you, to those who support us financially when we do the walks and for those that support us when we go through brain surgeries. We are truly blessed to have Tyler be so great.

Education and research is needed to help those who are diagnosed with Hydrocephalus. And it takes a great person to be a brain surgeon!

September is almost over and I have pretty much not done anything to promote or inform anyone about hydrocephalus other than the first post. I have a million blogs floating around in my head AND have started 9. I have finished none.

So the reality is, I am tired. I am tired of a lot of things. Some stuff have happened in my “private” life that has made it so that I am tired of people peeping into things and then saying stuff to others regarding a life they choose not to be a part of. So I focused on my little family and my ability to be their mom.

We have been establishing a routine here with Ty at school. We have been dealing with Tyler stuff. Stuff that people may think is not something to worry about, but the reality is, it is HARD. We are coming into a time where in our Faith, we are having to figure out if Tyler is accountable or not. Meaning, does he know the difference between right and wrong AND to understand the consequences and the ability to take on covenants. Or is he one of those small percents that is not in the category to be baptized. Because it was coming up on a VERY emotional time, I just kinda checked myself out of being judged.

An example of a Tyler-ism and does he get it. After a VERY long morning with everyone, the parents were upstairs in the house with Grayson. I was drying my hair. D came inside and asked if I had been downstairs. I said yes, earlier to check on Ty and his breakfast. Turns out, in the time I left and D came back in, Tyler had gone over to the water cooler and DRAINED IT on the floor. He hasn’t touched it in over a year. But that day he drained it. As I wiped up the floor we had him help, sat him in Time out and when we talked to him about what was the problem he couldn’t tell us why we were upset or mad or what he had done wrong.  To top it off... we are STILL not potty trained and it seems like a HUGE chunk of sadness realizing that I JUST might be doing this for a lot longer than I had thought. Like MY whole life.

Another Tyler-ism. Tonight while we were cleaning up after Dinner Ty was riding his scooter in the house. ( Mind you, my kitchen is HUGE and fits and entire sitting room in it. ) It is also all tile so it is the perfect mini race track for him. Grayson LOVES to play with him. He was being “chased” by Tyler and when Grayson decided to be done he left the game. Ty decided it was a GOOD IDEA to run him over. So, there goes Grays head first onto the tile. They are both super tired, we start baths. Tyler gets mad at Grayson in the tub and pushes him and holds him under the water while I am doing meds. Yep, the sweet Ty tried to drown my child. I was FURIOUS. You can’t just be ok with that. But what do you do. There is nothing that I can do to MAKE him understand why it is wrong.

To top it off, I am sick. We had hoped that I would make it 2 years before experiencing the symptoms of endometriosis. Well, gee. What a crock. I am so sick that I can’t feel my leg. It is so bad. When I went in to beg for a hysterectomy, I got told I wasn’t old enough. How can I not be old enough. 15 year old children ( and younger) can have children. I can’t get pregnant without massive loads of drugs, shots and the works.I can’t stay pregnant without all the help in the modern medicine world and I can’t decide if I want to feel my leg or not. So I get to do a month of waiting, crying and hoping my leg doesn’t fall off.

On top of the above, infertility raised it’s ugly head along with some emotions I forget where there. So while I am so happy for some, I am so sad for myself. Add that to the emotions of life, Cerebral Palsy, (judge mental people who I KNOW read this thing... HI to you stalkers out there) school, baclofen, hydrocephalus, anxiety, depression and people who can’t take their own responsibility, I am SOOOO tired.

Coming up. Ty’s birthday. Tomorrow we are going to the Phoenix children’s museum and in October we are going to Utah. Weather is cooler here and we are getting into our routine.


 We can do hard things.

A trip to the Grocery store

The other day on my "FTYM" days ( fake it till you make it) we headed out to McDonald's and then went to the grocery store. We didn't go to the typical grocery store ( aka Walmart) we needed a better quality meat and a leg of lamb. So we headed to Macey's.

( In case you were wondering I ♥ Macey's)

So we got as we got there I decided to REALLY turn it educational for the Toot!

We started at the meat case.

He saw the full trout. I told him what it was, showed him the sign and he said " ISH."

I told him that he was right it was "F...ish" and proceeded to tell him that we EAT and CATCH fish. Gotta teach him the truth right!

Next up!

I asked him what a Cow said. He said "MOO" in his really low voice and I clapped and Said " YES! A cow. The red stuff is COW! And Cow is YUMMY."

He proceeded to say "good" by his good noise and I realized there were people next to us!

We moved on to the Lamb.

You guessed it. We sang Mary had a little Lamb and Ty said " Baa" and I said YES!!

And proceeded to have him put the Lamb in the cart and said we were having Mary's lamb for dinner!

We went through the store and we found a butterfly net. He was TRYING so hard to catch the butterflies that just happened to be only visible to the blind kid! He LOVED it.

Next up we went to the produce section. The oranges and the fruit smelled SOOOO Good. He was walking up to EVERYTHING and putting his face right next and I would tell him what it was.

The Produce dude was a little older and asked me if he had a vision problem, to which I answered yes.

He asked us to stay there for a minute and he came back with an open Orange, Mango, tangerine and plum and a few other random fruits.

Tyler LOVED it. He smelled them and licked them and the man was SO amazing with him. He loved it and loved all the fruit and smiled and shook the man's hand.

Sorry about the quality. They were taken on my phone.

I think Macey's fruit man did a wonderful job of making my kids trip to the grocery store the BEST EVER!

Did I mention I ♥ Macey's!?

Health Care- The end of the world

I have taken a few days to write my thoughts on health care. ( Though it can be read HERE and HERE!) The reason I wanted to write it was because I feel a little misunderstood.

I am glad that it passed. Do I think it is the VERY BEST we could have? No I do not.

Some of the things that I don't like:

• I don't like that everyone should be required to buy insurance. It should still be a "choice." Some feel that it takes away their right to choose and in turn takes away their freedom.
• I don't like that Student loans were snuck in there in order to get a few "extra" Votes. I think that was sneaky and had no place in medical or health care reform.
• I don't like that taxes will go up though I am NOT sure how much we will really see the increase. ( does anyone know?) ( OK I looked it up.. Major increase for 200k income levels. I don't know anyone that makes that much. And slight increase for 88k and I again don't know THAT many people that make to much over that or even THAT.)
• I find it funny that you get taxed on Tanning and "cosmetic" stuff.
• And I don't' understand the Cadillac plans. So I am not sure if we fall into that but our insurance plan is REALLY a good plan but we pay a lot. But we do fall under the 20k per family I think we are OK.

Some of the things I like:

• FINALLY the pre existing clause and the denying of someone who HAS one of those conditions is gone for Children.
• I do like that it will also add in Adults but not until 2014. Why do I like that? I am fat and I have endometriosis. So therefore, according to the insurance company they won't insure me. ( yep I have that in writing!)
• I like that kids can stay on the insurance of the parents till they are 26.
• They can't cut the CHIP program and must maintain it. So Utah can no longer take money out of the CHIP program. ( which is a KIDS program) ( oh and medicaid program)
• I like the wellness program. That provide Immunizations and other preventative services for infants, kids and teens. It goes into effect in six months. So much can be prevented by these services.

Why this impacts me and my family so much and why I was and am glad that it passed: Ty has a pre existing condition. Ty is considered uninsurable. Without insurance we can not live the American Dream. We would be bankrupt and be the only homeless people who had Cobra. For us the cost of insurance literally makes us have to chose between a home or his care.

I was obviously not impressed with every part of the bill. I do feel that to be "American" I need to look at both sides and chose (hopefully prayerfully) what will be the best way for MY family and MY individual needs and go with what I feel is the correct thing for US.

And Just a few tidbits:

Our care for Tyler is dependant on what our insurance WILL cover, not what is BEST for him. So we don't think that his care will change.

No more people are going to go see a neurosurgeon than already do. So our wait won't change.

In Utah right now a wait on the genetics list is ten months. So again... things are already bad.

THERE is my take on health care!

Happy Shunt-aversary!

February 13Th Marks the official one year mark of the last Shunt malfunction and revision. It isn't the last but making it a year is HUGE... HUGE!

Shunts scare me. They are something I never thought I could deal with. they were not something I thought I could handle. But we have done it. I still freak out when we get throwing up. I freak when something is off but I no longer long for a CT scan in my basement that I can stick him in. I trust that my instinct, Dallas and IMPRESSIVE vomiting and a pediatrician that loves him will get us where we need to go.

Here is our September 2008 revision :

Because he was so sick he had to have it done quickly and so his hair was not fully shaved. We asked on he next revision to shave it al off.. PLEASE!

This is him the next day at home.. Safe and sound. Just where I like him.

Shunts scare me because I have to watch my baby die. Literally. The brain shuts down his heart rates, we can't keep him awake and he is vomiting in hopes that his head will lose pressure by throwing up. He can't focus, sit up or do anything. The longer we wait to take him in the lower his heart rate and the more emergency we become.

I am so thankful for my baby tonight. I look at him and wonder how I made such a beautiful little person. How lucky I am that I am his mom. And that he is an ordinary miracle.