just another turn in the road

dear friends and family,

Its been quite a week hasn't it? Many of you know what has been going on with our little family, and heaps upon heaps of people have been praying for us. Its incredibly humbling to hear about that and I feel mostly undeserving! ... and yet deep down I think all of your thousands of prayers have really been working and God has shown so much grace to my little darbs that I'm almost scared its going to run out... good thing it doesn't! and yet wow, it doesn't...

You might have read a couple weeks ago about how I was scared of this 'thing' darby was doing. Remember that blog? He was throwing his arms and looking shocked although he wasn't doing anything shocking :0) It came to the point on Sunday, March 29th, as darby had at least 4 episodes of this shocking spasm movement in less than an 8 hour period... my mother intuition was going wild. Jason and I were still very torn, as we thought that maybe it was just him being a baby or maybe being sensitive to movement... but I couldn't let it go.

Something that I have learned, and I would like many people to know, is that seizures in children, and especially infants, are not like what you see on TV. They can actually be almost anything... very unpredictable. After darby's stroke last November, I asked every doctor that I could what did a seizure look like? They all did the same thing... shrugged their shoulders and said, "could be a lot of things". I was concerned this movement was seizures.

Something else that I've learned? Mother's intuition's save lives. I have no doubt that from now on my family will always think I'm right when my gut is saying something is wrong... It started with Darby's stroke... his eyes just didn't look right. This time, these movements just didn't seem right. For those of you who are blessed enough to stay home with your children, or even those who do work, I bet you see your child the most. You see the things he does, what scares him, makes him cry, and how to soothe him the best. YOU know when something isn't right... don't ignore it. The disclaimer is that sometimes you will feel stupid when that goopy eye turns out to be absolutely nothing... but better checked than not. I know I felt stupid a couple times, but I'm glad for it now...

SO that sunday, a couple weeks ago, we got darby checked out. Crazy enough the team of doctors at the ER was the same as when he had his stroke. They were SO happy to see darby... and yet felt bad for saying that because why would you want to see someone in the ER? But still, they believed his prognosis to be very grave when we were transported out of their ER months ago. They were so happy to see a handsome and bright little guy. We left there hours later, with a more accurate medicine dosage of a med we were already on and a promise that Neurology from UCLA was going to call.

They did. On that next wednesday... we were told that he needed to come in for a longer EEG, since his spasms weren't shown on his last EEG. We were told he might have Infantile Spasms. I didn't know what that was. I was just out and about signing up for a new physical therapy for darby when Jason called back and told me what he had initially read after googling this diagnosis... it was all I could do to keep it together in public. All i could hear was "severe mental retardation", and "regression of all motor skills", and "unknown outlook". How could my child have this? He was a cute little baby that was just chillin', looking around. How could all this be happening in his brain?

We then had to wait, and wait, and wait. Thats probably one of the worst parts. Waiting at home, waiting for a hospital bed to be open for darby to get in and get the care he needed! Finally on Friday morning they called and told us to come in and go through the ER in order to get a room. Apparently this is slightly underhanded and sneaky, but at this point, I didn't care! My child needed to be cared for.

He was hooked up to the EEG for about 24 hours, and I pushed a button on the machine each time a spasm would occur. We were admitted and on Saturday got the diagnosis. Darby did have Infantile Spasms. It is an extremely severe form of epilepsy and it has no cure. In fact, it really has no treatment... there are drugs that they have used that work for IS but they weren't designed for it. They don't really even know why they do work.

The next problem was this... darby also had hydrocephalus. He has had it since he was 2 weeks. He doesn't have a permanent drain inside of him (a VP Shunt), and he has been watched very closely since he was 2 wks so that we'd be able to get him the shunt if he needed it. So far he didn't need it.

UCLA needed all his scans, and a couple more of their own. Then we anticipated surgery in the following week. The problem with surgery isn't just the surgery's risks, it was the medication choice and surgery risks in light of darby's IS. The more 'effective and hardcore' treatments that we wanted to start right away would deplete darby's immune system and make surgery an awful choice. We could start on a weaker medicine that didn't have great chances of working or doing much for him, but it could keep him healthy enough for surgery. Since the normal routine for IS diagnosis is to start treatment ASAP, we did. We started on the weaker medicine, Zonegram. We would decide about surgery the next day...

We met the surgeon and spoke again with our neurologists. They all seemed pretty torn about surgery. We got another CT done and started darby's NPO (no eating = no fun) in anticipation for surgery on Monday morning. Monday morning came and neurology and neurosurgery had a serious pow-wow. They didn't want to do surgery and decided against it. Darby's brain/skull has compensated for this long with the extra fluids in it, and its still doing okay. There is still more room in there and the pressure isn't that great. So we decided to wait on surgery and watch him closely... by the end of it we might be looking at more radiation damage from all the CT's this poor guy gets than the danger from the shunt... but we'll see ;0) and since we didn't want to waste this NPO, we got an MRI done and that went well. In fact, i LOVE darby when he's coming off anesthesia... its pretty much awesome. He's super drugged looking but cooing and smiling and just having a grand time. good times...

So what now? Well, we added the heavy medicine, prednisone to the mix of medicines that darby takes. We call in a week to talk about how the spasms are doing and we go visit again in another week. I have to take him to the pediatrician office twice a week to have his blood sugar and pressure and head circumference measured. In fact, as I write this, I'm waiting for a phone call from the pediatrician (we had to use a sub this week as his DR is on vacation), to confirm that the blood pressure reading we got is okay. It seemed a bit high, but thats what the medication can do. Everyone in the medical field is pretty shocked at how high a dosage darby needs. We also have to keep him out of the public and away from germy people. As i said, this medicine suppresses his immune system, and we don't need darby getting an infection that can be life threatening. So for now we stay home... but its not a forever change, just hopefully a month long one :0) good thing i'm homebody anyways.

I've read a lot of really good websites... especially the ones made by moms who were tired of the awful doom and gloom sites. Infantile Spasms is a very little known thing... many pediatricians shrug it off and call it something else... meanwhile the child is suffering lasting brain damage with each spasm. We are incredibly blessed to live in a city that is full of amazing hosptials and opportunities for darby to be treated. His neurology team has seen IS before and actually sees it a lot as they have at least one person at UCLA that specializes in it. I have read about moms who have to wait days for someone to be able to read their child's EEG because they are in such a small town... while we had an epilepsy specialist just see his first irregular pattern and knew it was IS before having to read the whole 24 hours worth, and he did it on the spot.

Also, can I say that we are 'cautiously optimistic'? The last spasm that we have seen darby have was Tuesday at 6pm... its now Thursday at 10:30am. We are over the moon about this! So many families have gone through their own hell having to try every medicine possible for IS and then do it all over again because its not helping the spasms. My heart breaks when i think of their struggles! I'm not saying that darby is cured, or that we have found our miracle drug. But I am saying that this drug treatment is going reallllly well. We are hopeful despite the people who tell us there is just a little rare hope for these children to lead normal lives. God was so faithful to get us through Darby's stroke, he'll get us through this too. I just couldn't imagine how gracious he'd be in it all.

Some of you might wonder why he got IS... in most cases, its common to be diagnosed with IS when there was already a neurological issue in the child. Darby's stroke caused brain damage, and that damage caused the IS. However, we still don't know why the stroke ever happened and so he does slightly fall into the category of children who just had this disease spring up.

If I could, i'd start a whole movement and organization for children who have IS. I'd make a video and make EVERY pediatrician sit down and watch it. Make them see what these seizures look like and tell them about the disease. 1 in 5,000 babies get it... it springs up in ages 4-8 months... i'd spread awareness of it. I'd spread awareness about germs and about how doctor's offices of all kinds should always have a room for children to wait in who can't be contaminated with germs. How everyone should be aware and how people shouldn't touch other's peoples children without asking! I hate to sound like a shrew and i hate to act like one... but my child's life is at stake. I CAN'T have that neighbor touch his hand or his cheek because she's 5 and she thinks the baby is cute! So please, learn from the stress and anxiety that I go through daily and never touch another person's child without their permission or actually... don't even put them in that spot to say no... just don't do it. Please.

Well, now that is out of my system... I never asked for this life. I never asked to have a special needs child or to want to know more about medicine and medical things than most pre-med majors. But God gave it to me, just like he gave me Darby, and I'd never give it back. I probably would never have learned to rest so easily in God's care if it weren't for this crazy life I lead. My child is a gift from God. Darby is the vessel that God chose to carry out his will... in better terms, Darby is doing exactly what God wants him to do. Darb affects more lives than I have ever imagined, and I would have been happy with just one. I wasn't given a child just so I'd have someone to play with and raise up to do the dishes and help me around the house... those are perks :0) but I was given a mission and a charge to take care of this precious little guy, no matter how long that will be. I want to use my life for a greater good then just myself and my pleasures. I raise my son to be healthy and happy and to love others, so that in turn, he can use his life for God's purposes.

I thank you all for your prayers for my son. God has worked miracles in his life and I continue to be amazed by them everyday. I continue to write in this blog so that you all might know how great our God is and how absolutely gracious he has been to us.

Also I want to thank my entire family and friends who have been so supportive, even since the birth of our child. My mother works so hard to help me and has made my transition to motherhood so very easy :0) I deal with the medical/technical stuff, and she just shows me a better way to soothe darby. Its a great team effort.

Also, again, can I say how thankful I am for my husband and his job? My husband's job has the best insurance known to man :0) we have hit the half million mark for the charges that darby has racked up in hospital fees... and I'm pretty sure we've paid under $500 in co-pays and ER fees. Its insane how amazing it is! Thank you honey for working so hard and for having the best job ever :0D

This is just another turn in the road for us. I continue to absolutely love the life that God has given us, even with its twists and turns. I knew I wasn't made for a dull life :0)