three years

A lot can happen in three years:

- Get married.
- Go to disneyworld.
- Have my first real hospital stay.
- Get my first apartment.
- Start paying my own bills.
- Get a bachelors degree.
- Support my husband while he gets his bachelors and begins his masters degree.
- Go to New York, Kentucky, Texas, Kansas, ... a host of other North Eastern States.
- Go to Carnegie Hall.
- Hold 6-7 different jobs, and sometimes more than one at a time.
- Be a wedding planner.
- Move to Texas.
- Gain a niece.
- Took my GRE.
- Passed my GRE.
- Got accepted into graduate school.
- Run a sound board at a church.
- Be a pastors wife.
- Wait at Barnes and Noble for a midnight book release... twice.
- Have my own washer and dryer!
- Move back to California.
- Get pregnant.
- Sold our washer and dryer.
- Learn to play settlers of catan.
- Made friends, lost friends, and made even more friends!
- Had a C-Section.
- Had a baby.
- Became a mother.
- Faced crisis.
- Learned more about medicine and medical things than i ever cared to know.
- Stayed overnight in a hospital for 2 weeks, then 4 days (4 times), and just overnight 4 times.
- Moved apartments.
- Experienced the true joy of having an adorable baby boy.
- Had more gifts and prayers and blessings bestowed on me then I knew what to do with!
- Experienced God's absolute faithfulness.
- Got to see all of Beverly Hills.
- Got to go to UCLA and see all of the medical center.
- Went to 30+ doctors appointments.
- Got a 2 bedroom apartment.
- Went to Ikea about 12 times.
- Life flew by.

And Finally, got to spend each moment with an amazing man who absolutely and unconditionally loves me.

Place me like a seal over your heart,
like a seal on your arm;
for love is as strong as death,
its jealousy unyielding as the grave.
It burns like blazing fire,
like a mighty flame.

Many waters cannot quench love;
rivers cannot wash it away.
If one were to give
all the wealth of his house for love,
it would be utterly scorned.

- Song of Songs 8:6-7

I love you Jason, thank you for 3 wonderful years so far!

Infantile Spasms

Hello Friends :o) Don't be alarmed by the title of today's blog... all is very well! But as I was going through our library of videos, I came across the video that I took of Darby having a Spasm episode. I had taken this video as we waited in the UCLA emergency room, to be admitted to find out what was going on. I had described it to doctors but it never seemed to come out clear. I remembered other videos I had seen on the internet, that helped me to understand what infantile spasms looked like. So I decided to catch on film exactly what darby was doing and it turned out to be a good idea! When the neurology team came in, I was able to show them this video and it helped tremendously.

I decided to post this video. Its short, but its also a little hard to watch. I captured about a minute of what the spasms look like. As you watch longer they grow in intensity, as they did when an episode would start. Infantile spasms manifest themselves differently in many children, and so this isn't the end all of what they look like. But I wanted to help others to understand what they often look like and to be aware of them. I also don't want to scare you and think every time you see a child twitch of do something similar that that child is in danger... but considering we were able to go to a good hospital's ER the week before, have them see a little of the spasms, and not recognize them that all... that kind of left a bad feeling in my stomach. They brushed them off as mild seizure activity and sent us home with assurance that we could go see our neurologist and figure out if his medicines just needed to be upped.

If you are interested, feel free to watch this clip. If not, then don't worry! But please remember to pray for those children that are affected by this problem still. We are tremendously blessed to have had this problem go away, and fast. The medicine treatments we did were quite effective and Darby is currently spasm free. But please remember to pray for those children who still live with them everyday, and the parents that have to deal with the awful tasks of deciding on medicines and cling to hope that one day their child won't have to deal with these anymore.

If you or anyone you know is ever wondering about specific treatments that darby has done, don't hesitate to ask. I'd love to help others to understand or let them know what had worked for us.

Thank you for letting me share.

Bumbo!

Darby has recently decided to enjoy his Bumbo. The problem is that his thighs are a bit too big... so i have to put a blanket in it, to keep his legs from sticking and keeping them sliding. Yet, with the blanket, its harder to put the tray on. (also you almost pinch his legs when you put the tray on). So we just slightly slide it on and hold it there :o)

Enjoy more video! (its sort of long, and sort of boring, but I know you doting relatives out there still love it!)

Love is in the Air

Like the new look? I'm having fun :o)

I'm enjoying the rich blessing of having someone else watching my child with me as well as having a sleeping child! I'm home in San Diego, and since its 9:45 (the night is still so young), I thought I would take advantage of my free time to FINALLY play on blogger. Back when i had an office job, sat at a computer all day, and wanted to pull my hair out because of boredom, i could figure out fun things on the computer. I knew how to do almost everything that needed to get done on a computer. I can just feel my Microsoft office skills slowly slipping away...

Anyways, so i'm feeling like a change... i decided to do this background because.... its almost MY anniversary! Woo Hooo! So i'm feeling lovey-dovey and posting a cute background :0) I'm also awaiting Jason's arrival into San Diego, as he worked today and then waited out traffic, and is joining me tonight! Isn't he great?

I'm also excited about our adventures tomorrow! I just found out that a local national park is free tomorrow, so we might hit the road and visit the scenery. Then we will be off to go see Harry Potter!!!! I'm SUPER excited. We already bought our tickets (at costco, great price for 2!), and i just need to go turn them in for actual tickets with a date/time. I am hopeful for a wonderful day! (and thankful for wonderful family who babysits!)

So please bear with me as I vacation and blog. Jason is bring our computer (I think...) and i need it for some of our pictures that i wanted to post on the blog. But if not, maybe I'll get things all settled by next week!

If you are wondering about Darby, he's doing well. He's healing and getting back to business. He's definitely still progressing and learning new things! I can really feel how he's getting stronger and learning to coordinate his hands with toys. He can't sit up on his own, but while in my lap he sometimes does a 'crunch' and pulls away from me and sits. It all depends on his mood, and trust me, his mood wavers. Yet we are approaching the 1.5 week mark from his surgery, and this is about the time that he starts acting more like normal and less likes super sensitive baby. Jason has said that Darby is more mood swingy after surgery, than I ever was in my pregnancy :o) its soooo true.

happy weekending!

Missed the Joke

I tried to put Darby down for a nap, but apparently he had other plans. He suddenly broke out in giggles. I have no idea why... I wasn't doing anything differently, just laying him down for his nap! But it had been a couple days since we heard his gutty giggle, so I couldn't help but record it!

I have also finally been able to upload a video!!!! I've tried numerous times to do this, but I think I was running into problems using my Mac. I hopped on the desktop and it worked! Woohoo!

Enjoy!

Observations

Greetings from Cedars :0) (insert cheesy postcard-esc scene)... Darby is doing very well! His surgery went by without a hitch, he did his time in the PICU, and we are currently residing in the pediatric unit. Darby is eating, crying, sleeping, taking his medicine, talking, playing, and pooping. So... he's good. We are most likely going to go home tomorrow! We were able to get a good pain medicine that hopefully we will also be able to take home. Darby is much more responsive and happy after this surgery than his last (we got a couple smiles out of him tonight). He is still quite irritable at times, but we know it will get better! He fights sleep... finally falls asleep, then is woken up by a nurse and the cycle continues. Can't wait to go home!

However, in this trip to the hospital, I can't help but make some observations about hospitals and the like... i feel that I have some authority as I have stayed in a handful of hospitals in my life and probably more often than the average person. Here is what I've noticed...

- Every nurse is completely different. This fact is irritating and hilarious and knowledge of it can be used to your advantage in some cases. I find that PICU nurses are often not as shy about giving more 'dangerous' medications, as they do it more often. I have also learned which nurses are the crazy strict ones that do NOT waver from policy... "he MUST wear his arm band", "I must use the machine to dispense of medicine", "Your cot MUST be up by 8am". I know to avoid asking out of the ordinary things with those nurses. Today I was able to get a really kind nurse who seems to favor whatever I wanted, and I got her to take off Darby's splint that held his leg straight. It was bothering the begeebers out of him, which in turn drives me nuts... most nurses would have said no, but she said "oh sure, lets take that off." I just smiled and went with it and cheered on the inside for that victory. Maybe she saw the bags under my eyes and the look of ferocious desperation for peace in my face.

-I like that i can control the temperature in the room at Cedars. UCLA is central and you can't change it... so i have to bring a fan, shorts, socks, and sweats, because you never know what you're going to get :o)

-Apparently, I'm crazy. I use an organic baby formula, its a popular brand amongst healthy-ish mothers, but apparently I'm the first one who has ever brought it to the hospital? Whenever I was asked what formula we used, I replied Earth's Best... i found that doctors and others thought I was using some crazy knockoff brand since they had never heard of it. Being too embarrassed to say that I used organics, i didn't mention the end of the title (organic formula). But then I realized how they thought i was crazy for not using Simulac or something. So I decided to start adding Organic to the end of the title, and just suck it up when they thought I was a tree hugger. For instance, our pediatrician this week, he asked what formula I used. I replied, Earth's Best Organic Milk based. He looked at me, "hmmm you're the second person I've heard mention that kind. Is that like a Whole Foods thing?". Embarrassed I just said, "um, well they do sell it there... but its just a good brand." and smiled :o) He's a nice guy and I think he knew I felt weird, so he just blew it off and continued. Then, we get to the PICU yesterday, and our nurse sees us and remembers us... then states, "oh yeah! you guys use those weird bottles and your own food!" Really? Thats how they remembered us? Is it so abnormal to want to use the formula that darby's already used to? Apparently, we're crazy. :oP

-When you've been in 4 out of the 8 possible PICU rooms, and know which ones have bathrooms and best accommodations... then you know you've been there too much.

-When you can specifically request the green chair with a broken inside handle... then you've really been there too much.

Sometimes you have to find the fun in the places that aren't so fun, but we've learned to see the blessings that God has given us, however small they might seem. Those blessings come in little things: working Internet, getting medicine on the dot of the clock, getting more waters-diapers-bottles without asking, a very quiet and gentle CN who takes darby's vitals... we are so happy when these things happen!

Thanks again to all of you who have prayed for us, emailed us, fed us, and just plain loved us and our child. It means more to us than we can express in words and has helped us tremendously to get through some of these tough times.

I, personally, can not wait to go home tomorrow. We've been through a lot in the past few months... a lot of hospital stays and a lot of unpleasant procedures. I can't wait to be home and have some of the home comforts that I know help darby feel comfortable, as well as me. I most definitely hope this is our last hospitalization for a long long while :o)

Tomorrow's Surgery

Many of you have heard, we are heading in for some more surgery again tomorrow... if you haven't, then well... we're heading in for more surgery tomorrow!

Darby had a follow up CT scan last Monday, which I took with me to visit his Neurosurgeon last thursday. Once he reviewed the CD, he came into our room and immediately stated that Darby needed a shunt. The fluids are still not draining and moving like they should. DP (doctor) said he was really sorry that the first attempts had failed and we couldn't avoid the shunt placement now. But we totally understand and are appreciative that he tried to help us avoid this permanent fixture to darby's body. We also appreciate how quickly he was able to put darby on his surgery schedule! The sooner we can do surgery, the sooner darby can recover, and the sooner we can get back to work on his therapies and progress.

Speaking of progress, we attended our 3rd physical therapy appointment today and our therapist already feels like darby is getting stronger!!! Yay! I can't really describe to you how encouraging to my heart that is. Even though he cried during the whole session (its normal, he doesnt like working that hard), she could tell his body was already getting stronger.

Back to the shunt... you can google shunts and learn more, like i probably should, but from what i know, its a permanent thing. It will connect darby's ventricle to a tube that will go all the way down to the abdomen, where the fluids will drain and be reabsorbed by the body. They will be leaving excess tubing in his tummy so it can grow as he grows. The one different thing about his shunt, is that its going to be magnetic. When darby's shunt needs to be adjusted to help the flow, they just hold up a magnetic device that will adjust the flow. This is apparently a great technology! However, we need to show caution in the future with magnets being too close to his head. If he has anymore MRI's in the future, the shunt will be reset, and he will need to have it programmed again.

So we check in at Cedars at 5am tomorrow, surgery is at 7am, the procedure should take about 2 hrs, and he will be in the hospital for about 3 days. I'm not sure if that means come home friday or saturday, but I'm sure it will depend on darby's progress.

We will try to keep you updated as best as we can. We appreciate all your prayers and support and even all the meals! We LOVE them! Thank you!!!