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.