Bonnie Likes to Helps Me Garden

     Bonnie likes to help me plant plants, and water the plants. The other day I was planting an avocado tree and went to go get some water and when I came back I found Bonnie like this. She tries to stand in every pot I plant something in.

standing with the avocado tree

     She follows me back and forth and waits for me to get water, dirt, or a plant and then she follows me back and just sits and watches me.

     However, she is not being very patient with the carrots and pulls them out along with some flowers that I guess she wasn't a fan of! ;)

Flower she didn't like.

     I get these little tiny flowers that I have actually never seen what they look like because someone (Bonnie? Clyde?) bites them off before they bloom. 

    Also one of her most favorite things in the world is helping me water all the plants. Seriously, she gets so excited! We unroll the water hose and water the plants and then we go to the grass and she runs and bites the water and sticks her head under the stream of water. She loves to run through it and then it makes her sneeze and after a couple minutes she is soaking wet and shivering. So then I take her inside to dry her off. However, she tries everything to go back outside and play with the water hose.

Me and Gaucho

Gaucho is my stuffed animal that I love and he has been through everything with me. I've had him since I was born and he's been to basically every single Dr. appt. and he has been at EVERY surgery. I can't remember a time when I didn't have him. You can see him in every picture of me when I'm in the hospital. Also, he comes with me on every trip. Yes, even now, he still comes on trips with me. 

The hospital even gives him his own hospital bracelets!  When I had my last surgery at 15, he came in the operating room with me and the nurses still put one on his wrist.

Gaucho at my 8th surgery! 

(those are probably coffee stains, since I would share everything with Gaucho and yep I've had coffee like my whole life…)

Fun fact: (well its a funny fact, maybe). In my mom's Facebook post about this photo she says this is my 7th surgery. Later, at the beginning of 10th grade we had to list my surgeries for my neuropsychology evaluation. We went back and looked through my baby book for the dates and… my mom realized she had left one out - she had literally just forgotten about one entire brain surgery, so my whole life we were saying I had one less surgery than I actually did. 

Of course my mom feels like the WORST parent EVER, because she had forgotten one of my 8 surgeries. But, I had a lot of the surgeries one right after the other so there was a lot going on - (6 of my surgeries were before I was 4 and she was also taking care of my baby brother!)

We Have Raised 3% of Our Goal!

We have raised 3% of our goal. $330 dollars.

We would reach our goal:

If 97 more people donated $100 

If 194 more people donated $50

If 387 more people donated $25

If 967 more people donated $10

If 1,934 more people donated $5 

If  9,670 more people donated $1 - theres about this many people living in Lantana...

Eilish's Donation Page (http://HAwalk.kintera.org/faf/r.asp?t=4&i=1098262&u=1098262-400879978)

Reminder!

Hey! Just a reminder, the walk is 70 days away and we really hope we can reach the $10,000 dollar goal for donation, but we can't do it without your guys help! Here is the link:
Eilish's Donation Page (http://HAwalk.kintera.org/faf/r.asp?t=4&i=1098262&u=1098262-400879978)

Thank you,
         Eilish and Bonnie!

And thank you so much to those who have already donated!!

Bonnie and I at the Houston walk last year!

Interview With My Mom, Part 2

So, to continue the story of you.  The same time you got your shunt, Hanley had her first open heart surgery. I think it was the same day.  I remember they put your isolette’s side by side (before you were diagnosed with Hydro, you had ‘graduated’ to advanced NICU, but with the diagnosis and surgery you were moved back down). Before you had your shunt put in, you had a spinal tap, and you weren’t too happy about that. I got to watch and feel helpless. Also, at your birth, you had an “opening”, a deep hole at the base of your spine, but the doctors checked it out and found that it was closed and not open to the spinal cord.

You had these big HUGE eyes that never closed and the nurses said that no matter what time of day or night, they were always open, watching.

 

You with Grandpa Hanly after shunt was placed at 4 weeks.

Hanley was on the feeding tube for way longer than you – long enough that it reshaped the roof of her mouth. Neither one of you could breast-feed, and so I pumped for both. I learned the hard way that I shouldn’t fill up the whole bottle if you are only going to drink .5ml at a time. The nurses would throw out the practically full bottle. When I tried to feed you with a bottle, you would stop breathing and set off all your alarms, so I had to hold you in this strange position and ‘remind’ you to breathe. 

Because I had a vertical C-section, I was in the hospital longer than most moms.  I also was very weak from having been on bedrest for the entire pregnancy, and the C-section incision messed up my muscles, so I had to still use a wheelchair to visit you.  When I finally was released from the hospital, it was so painful to go home without my girls – like we were eliminated from the first round of the game of parenting. Your nursery at home was all set up and I hated walking by it. Luckily, my parents and my brother lived in Cheney also, and so they were able to take shifts visiting you both in the NICU, so you both were rarely alone. Finally at around 2 months, you were released from the hospital! It was so exciting, yet also more stressful because Hanley would stay in the NICU for another month.

You had many shunt malfunctions and revisions after that, and I will do my best to tell you about them. But I might get my facts confused or combined!

One malfunction was at the distal end - the end of the tubing that drains into your abdomen clogged and so the CSF backed up into your brain.

You can see the bulging on your neck 

One time you were at the pediatric ophthalmologist for a regular check up and she noticed that your optical nerves were bulging. She immediately called your neurosurgeon. We headed over to the hospital where they immediately did an MRI. The hospital called our insurance who declined to pay for the MRI. I remember walking past the neurosurgeons office while he was on the phone with the insurance company. He was yelling, “If this child goes blind, it will be your fault!!!” The nurses on duty weren’t used to doing IV’s on small children so they kept messing up, and poking you over and over. It took many tries for them to find a vein  - to the point that I screamed at them to find someone who was actually qualified – but they finally did find a vein in your ankle (and you were covered in bruises) and were able to sedate you for the MRI.  Surgery was a few hours after that.

They often had to use your ankles for IVs (one time the IV was on top of your head) but when you started walking, they had to fully cast your leg to keep the IV from being pulled out.

Hanley died at 8 months old, during her second open-heart surgery. When you had one of your revisions, we were coincidentally put in the same room that Hanley died in. That sucked, to put it mildly.

 When you were shunted at birth, it was a very small reservoir.  As you grew, that shunt could not keep up with the flow and you had to have a larger shunt put in.  I think this was when you were 3. You had the initial shunt put in, a revision due to shunt malfunction at about 1, another revision at 2, and 2 revisions at 3.  One of the revisions when you were 3 caused too much drainage and caused you to get hernias.  I remember giving you a bath and noticing these bulges in your lower abdomen! So, a few weeks after the shunt replacement, you had 2 inguinal and 1 umbilical hernia replaced.  Before you were 4 years old you had already had 6 surgeries.

Waking up after one of your surgeries (this was when I was 5 months pregnant with your brother, and the power went out)

Hospitals are a lot more accommodating now then they were 17 years ago. I slept many nights in your bed with you, or just sleeping in the upright chair. Some nights I slept in the upright chair, holding you while you slept, being careful not to pull out any tubes or wires. This was even more fun when I was trying to do this while pregnant with your brother. I think when you and Hanley were born it was during Spokane’s big ice storm. And during another hospital stay, the power went out. Luckily you were already out of surgery!  We requested that all your surgeries be at Sacred Heart (where you were born) after having one surgery at Deaconess. The reason? Sacred Heart had much better food and Thomas Hammer coffee.

I’m probably forgetting so much! See, you being my first child, I didn’t know any different. 15 doctors visits a month was normal. Having to take you to the neurosurgeon, ophthalmologist, Occupational Therapist and many other doctors was my life. 

Each time you seemed extra tired or fussy, or threw up, or had a fever meant a visit to the Neurosurgeon because we didn’t know if it was typical baby stuff or shunt malfunction. Getting strange looks because half your head was shaved and you had a huge scar and bulge on the side of your head was an everyday occurrence.

Because of all that you and Hanley went through (and what you continue to go through) makes me less sympathetic and more sympathetic towards others at the same time. I’m more understanding towards families who have children with a disability, because I can relate to some of what they are experiencing. I am less sympathetic to the mom who grovels for pity on Facebook because her baby had to get a vaccination shot and the baby cried. I don’t know, maybe that mom still needs sympathy. Just not from me.

Cannon Beach

My last day in Oregon!! No!

Today we woke up and went to the beach in Seaside and I swung on an old swing set in the sand then I played in the water, again. I think it was colder today than yesterday! After that we went and ate at Pig n' Pancakes. We ate there the last time we were in Seaside too. We looked through some stores, but they were just the typical touristy stores - though we did find a few good trinkets. 

So, we headed off to Cannon Beach. We stopped along the way at Ecola State park and hiked on muddy, root filled trails -  1 and 1/2 miles up and down hills in flip flops to a beach, and then 1 and 1/2 miles back in sandy wet flip flops in rain which made the trails even more slippery. When we finally got to the car, we saw an elk! Ooh ah, like I've never seen that before! :)

On the way to Indian Beach.

On the way back from Indian Beach (photo taken in same spot as above photo.)

When we made it to Cannon Beach, it was so foggy you couldn't even see Haystack Rock! It cleared up a lot though by the time we left. We walked on the beach again, and my mom went in the water to get a dying starfish and then her and some people poked it and put it back. 

We had dinner at Sweet Basil's Cafe in Cannon Beach. It was very good and I think there were only 4 tables in it. Then we drove back to Portland and returned the car, got to the hotel, and we leave for Texas tomorrow morning. 

I don't want to go back, but I think I will be bringing Portland's "Heat Wave" down to Texas except in Texas it will be considered a "Cold Front" instead!! Ha!

I am very very excited to see my dogs when I get home though!!

Off to Seaside!

This morning I think my mom and I were basically the only people left from the conference!  Everyone had to leave very early. :(  

We ate breakfast at Pine State Biscuits. After that we went to Salt and Straw, an ice cream place. My friend had been there and tried a strawberry balsamic type ice cream, so she told us we had to go! They have all these crazy unique flavors! I tried honey lavender ice cream and my mom tried a chocolate ice cream that was more on the "salty" side. (She wants me to tell you guys it was called "Freckled Woodblock Chocolate".) It was hard to choose the flavor combinations - they were all so interesting. I wanted to try them all! Then we looked at some stores near by and then headed off the Seaside. We also stopped by the bookstore that is used for the 'Women and Women First' bookstore on the Show Portlandia. (One of my favorite shows!) It had some interesting items... like VERY interesting items!

On the way to Seaside!

On our way to Seaside, we had to stop because I saw a sign for picking your own blueberries, so I had to do that! I haven't done that in like 13 years or something?!! So, now we have 5 pounds of blueberries (that was the minimum we could get) that we don't know what to do with! Maybe we can get them home? 

We got to Seaside and immediately dropped everything in the hotel room and went out to the beach so I could play in the water!  It was nice and cold outside and so was the water! We walked around for a super long time and we found some driftwood and shells and sand dollars!  One of the sand dollars was still alive so we moved him closer to the water. We also found a teensy tiny shell, but then realized there was a teensy tiny crab still living in it. We carried it to a pool of water and he turned over and scurried off - it was so cute!  We then had dinner at the place where we ate at 10-11 years ago when I first came here.  

The purple sand dollar was still alive, so we put him back in more water.

Day 3, The Last Day of the Conference

Again...since my mom and I stayed up till 2 we skipped breakfast and the keynote speakers. At our first conference in 2012 we went to EVERYTHING and we didn't bail out on anything.  But a lot of the stuff at this year's breakfast and lunch was information that was very similar to the last conference. So, we didn't feel as bad sleeping through them this time. I had the last of our Voodoo doughnuts for breakfast and I'm really not much of a doughnut person so I kinda don't need another doughnut for a year!

My first session of the day was "Speak Up: Owning Your Condition" and the speaker had some good information about being your own advocate. I have a sheet of the tips and maybe I can share them later for another post topic. After that, my mom and I went to "Anxiety, Depression, and Hydrocephalus" I didn't get to finish it, because I started to not feel so good, so I went to our room for a while. My mom will have to tell me what she learned.

That is what I like though...at the last conference I had some times where I didn't feel so great to and no one grilled you on why you were leaving or why you didn't show up, because this all kinda happens to everyone here. So, everyone understands that maybe you have a headache and need to go somewhere where it's dark and quiet for a while, because bright lights and noise don't really help a headache.

I went back down for lunch and they announced some awards and then I left and wandered around. Then my mom and I went to the mall next door. I found a Seahawks sweatshirt, and keychain, and magnet! I also got 2 other tee shirts, and some jewelry. Yay! I was mainly looking for more plaid shirts, but they were all too big. Then we came back and I did some more photos and videos for promoting the conference.  My mom ran to Safeway to get me Ibuprofen, because I had a TERRIBLE headache and Ibuprofen is the only thing that works for my headaches. I couldn't wait for her because my head was hurting so bad I started asking around for anybody that had some. Luckily, since this is a meeting of people who have Hydrocephalus, I was able to find Ibuprofen quickly. And how I forgot my Ibuprofen at home...I don't know! I always have it everywhere with me!

Then I went upstairs to get ready for the Dinner Dance and Talent Show.  I did not perform this year. The dance was really fun - just getting to dance and hang out with friends!! I danced the whole night, which is funny because I usually don't do that. It was a great way to end another great conference! I can't wait for the next one!! 

Jamie and I at the "after party".

Me and some of the Garzon family!!

There were so much photos taken, but not on my phone! I will have to post more when I find more!

Day 2 of the Conference!

Since we stayed up till 1 here (meaning it was like 3 Texas time), when the alarm went off so we could be at the 7 o'clock Breakfast with Scientific Keynote Speakers, we looked at each other and went back to bed for a couple more hours until Breakout Sessions started.

The first session of the day that I went to was "Ask the Experts: For Preteens and Teens". Which pretty much explains itself. An expert came to talk and then we asked questions, if we had any. 

Next I went to "Life After High School, Transitioning into College". Where they talked about... transitioning into college. Then some of the teens and kids went to the park across the street and we had our photos taken by a professional photographer. After lunch, (which I bailed out of halfway through because it was the same guys from breakfast finishing up their talks), I went to "Sharing and Socializing" and us teens just got to hang out for about an hour. Which, to me is probably way more important than any session, because we got to hang out with people similar to us! Next, I was going to go to "Preparing for College", but a friend asked me to go to "Sports, Activities, Gadgets, and Hydrocephalus". Which talked about restrictions on sports and activities or gadgets people with programmable shunts should stay away from. Which it sounded like there was really no sports, activities or gadgets to stay away from. My mom has been going to different sessions, but she went to the "Preparing for College" one anyways.

We got some more photos taken in different groups - such as Teens with Hydrocephalus. From there I went and helped with a video for teachers to watch so they can learn more about Hydrocephalus. For the video, the older teens talked about what was the hardest thing in school, or what a teacher did that was helpful, and things we thought the teachers should know. 

Then we went to a movie night and we talked about some plans we have for things in the near future. I left in the beginning of the movie though, because a family friend came to meet up with us. Then when the movie was over I went back to hang out with everyone for almost the rest of the night!

Day 1 of the Hydrocephalus Conference!

We made it to Portland! We got here around noon, we had a stop in Seattle so we flew by the Space Needle, Safeco Field, and Century Link Field. I also saw a 12th man flag  painted on a roof of a building! 

The lady across from us felt bad that we didn't have this picture, so she texted this to us. We didn't tell her we'd seen it a few times!

After we got to the hotel, we went to the Conference Welcome Reception. Adam Page was the guest speaker. He is a sled hockey player that got 2 gold medals in the Paralympics - one in 2010 and one this year, and he is only 22.  That was very cool! 

After that, I went to a teen welcome reception while my mom was at the parents one. And Adam Page also joined the teen one. We got to get pictures with him after that! Yay! At the teen welcome thingy we introduced ourselves of course! So, I got to tell everyone about Bonnie and of course everyone was surprised! It would have been pretty cool to bring her, but it was too expensive. :(

Adam Page and I

After a little bit of dinner, my mom and I and our friend Jamie went to Voodoo Doughnuts. We got the Voodoo Guy doughnut, some plain ones and a maple bacon one and an Oreo peanut butter one. I have only tried the Voodoo guy one so far. It was good!

 

Jamie and I 

Portland Here We Come!

My mom and I head off to Portland tomorrow!! Yay!

I'm so excited to go to the Hydrocephalus Conference! I wonder how many people will be there from the last one. I signed up for some cool sessions at the conference too, and I am very excited about them!

Also, we are staying a couple extra days to do some things in Portland and go to the coast. I think it's been maybe 10 years since I was last there!! Also I am finally going to go to Voodoo Doughnuts! 

And we might go to some places that are on Portlandia! And eat at some cool places. And maybe see if they have some different options for clothes then what Dallas has. 

BUT that means the guys are staying here and have to take care of all 3 dogs and maybe our cat, if she shows up this week. She was here all last week so it may be time for her to go on another adventure. 

Anyways this means a very detailed list:

-Clyde get meds at 8 am and 8 pm you give him .75ml of Lyrica from the orange triangular bottle and .7ml of Altenol from the round brown one. At night he gets a 1/2 tablet of Prednisone from the blue bottle for 3 more days then you start a 1/2 tablet every other night.

-Dolly get 2 of the Benadryl (pink) when she wakes up and 2 before she goes to bed.

Dolly gets 2 1/2 cups of special adult dog diet food a day from the white scoop in the box labeled Dolly.

-Bonnie CANNOT stay outside all day (even if she wants to), since she is all black and drinks no water. The other 2 will let you know when they want in. You will have to drag Bonnie inside and ignore her cute attempts at trying to get back out and being angry at you. And all her growls (that actually sound like she's purring and blowing bubbles). But, also the dogs can't be inside all day unless you want to clean up even more messes. I know Clyde will already have plenty for you.

-And we might have to clarify that- you cannot give the dogs everything you may want to. And we may have to tell them that they might have to wake Dolly up and make her get out of bed, because she will sleep all day if you don't. Like Graçon.

-Oh, I almost forgot! No pups outside while you are mowing the lawn...since Bonnie believes everything is her friend. And make sure the pups are inside, in their playpen before you leave the house.

-And little things like it would be nice if you water my flowers in the backyard. On the patio and also by the pool equipment.

And no throwing away any mugs while we are gone.....

:) They are gonna hate me for posting this!

See look how well my sunflowers are doing! :)

Road Trip

The other day we had to take Clyde down to A&M for a check-up with the vets at the university. (By the way, Bonnie didn't get to come and she wasn't very happy about that.) We were up at 5:30 am and headed out by 6. Clyde did very well. The pups always are very good on road trips - better than my 15 year old brother. On the way down Clyde spent most of the time sleeping in his crate on the floor.

We got there for his appointment at 10 am and they took him for a few hours to do some tests. The reason he had an appointment was that he has been biting his feet till there was no fur left on them and they were red. The last time he did that was before he started taking Lyrica, so we took him down to see if maybe his dosage or medication needed to be changed.

So, we knew we had at least 3 hours to kill. Even after stopping to get something to eat, we still had a long time to wait. What else should we do? Well, remember when I said I got my Seahawks 12th Man Flag and had some big plans for it? 

Guess what I did! I took our Seattle Seahawks 12th Man Flag to Kyle Field at A&M and took pictures in front of some of their 12th Man signs. I just HAD to do it!  Some students walked by and laughed, saying, "Oh no a Seattle 12th man!" 

I've never been to A&M since the rescue group has always taken Clyde to his appointments. So....this could possibly have been my only chance to hold the flag up there!

I thought it was kind of a cool situation since I'm from Washington and have been a Seahawks fan my whole life, but then I moved to Texas 7 years ago. I had no clue about the A&M 12th Man story until about 6 months ago. Despite being in A&M country, I had only heard of Seahawks 12th Man.  So when I heard we were taking Clyde down to A&M I thought I might as well bring the flag!

It was so windy that I had to kneel on the flag to hold it down!

After all that fun, we went back and picked Clyde up and headed home. They said his heart hasn't gotten any worse - so that was good, and gave us some different medications to try for his nibbling. However, eventually we will probably need to up his Lyrica dosage - which is what we thought.  

On the way back home Clyde felt he needed to test out every seat in the car. Now theres Clyde fur everywhere in my brand new car.