Birthday Party!

We only sent one kid for stitches, so I'm calling the birthday party a success! Although, Owen never did manage to get his legs to stretch far enough to reach the pedals on the go-cart. It certainly wasn't for lack of trying!

The "I finally give up" face.

As per our usual summer birthday party routine, the party consisted of kids running around, playing in the kiddie pool, shooting arrows, and riding quads and go-carts. This year we were able to borrow quads from the next door neighbor and Grandma Sallie, so there were twice as many turns as usual. Which was especially nice once the go-cart broke!

Owen and Simon

My nephew Braeden

I was mostly busy manhandling little kids, so I didn't get many pictures of the kids riding. I think Devon got some, but I haven't downloaded her camera yet.

Brenna got a belated birthday present to open which made her VERY happy. She'd been feeling a little left out with all the presents that weren't hers. In case you are wondering how to tell boys apart from girls, the girls are the ones who are excited to get clothes for their birthdays! Even at two years old, Brenna was thrilled to get clothes for her birthday. The boys not so much, except for Owen's John Deere hoodie. He was really excited about that since his other one doesn't fit anymore and it's his favorite.

Owen was even excited about one of his cards! A Skylanders card that talks, he played with that as much as any of the presents!

The wind wasn't cooperating with the candles, but we finally got one lit for Owen to blow out. That's his favorite part of the cake, since he can't actually EAT the cake. We did get our little tubie friend to eat some frosting as well as the M&M's off of most of the cupcakes and part of a hot dog. So that's a plus even if we did send his big brother to the hospital.

I think overall, the kids had a great time. I'm absolutely exhausted and quite glad that we don't have another birthday for several months!

Switching to Swedish {Owen's Story Part 5}

Finally! Part five of Owen's story. You can read the first four parts by following the links below.

Part One

Part Two

Part Three

Part Four

So, at this point we were headed down to Seattle for a video EEG. Since Brenna was still nursing, she came along too. We were told to expect to stay for 3-4 days. We got a hotel room in Seattle Sunday night so we didn't have to get Owen up too early for his 8:00AM check in. We already knew that lack of sleep was a sure fire seizure trigger and while the hospital wanted to get a seizure on record, they didn't want it happening before we could get him all hooked up. Although Rod and I were feeling more comfortable with our new hospital than the old one, we were still very much on edge.

We arrived at Swedish and checked in downstairs and then headed up to the pediatric ward. The nurses were so nice about settling us in. Swedish has all neurology patients bring their own medications because it is extremely important not to change brands. So, they had us bring our meds from home and then the nurses take them and check them in with the pharmacy. Due to our previous experience at our old hospital, Rod and I chose to keep a dose of rescue meds on us. We just tucked one package in our bags and didn't hand them over. I was not going to be in a position where Owen was seizing and  no one was bringing me the medication soon enough EVER again. The EEG tech came in and started hooking up all the probes. First they measure his head and mark red X's in all the right spots. Then they clean the spots with a special cleaner and apply the disks with stuff that looks like toothpaste, but isn't. Next they put gauze pads soaked in the most vile smelling adhesive known to mankind and place them over the disks. Then they use a little air/light gun to harden the adhesive. The whole process takes about an hour and a half. Finally they give him a little hat and hook up his monitoring pack.

From this point on Owen is stuck in his room. The wires reach far enough that he can sit on the window seat and reach the bathroom, but that's about it. Although last time our neighbor did manage to make it a few steps into the hallway before he disconnected his. A few minutes later the nurse came in with Owen's rescue medication and told us that after reviewing his chart they had decided the medication needed to be kept in his room. I was starting to feel a little guilty about keeping the dose I already had with me secret. She also put in an I.V. so they would have another way to give even more medication if necessary. Once she left the room, Rod and I both let out a big sigh of relief! We really felt like we were in the right place and we hadn't even met the new neurologist yet!

So, we all hung out in Owen's room for the next few days. The hospital was kind enough to let me keep Brenna in the room since she was still nursing and largely immobile. Rod ended up staying too because it was pretty hard for me too keep Owen hooked up to all of his wires and also take care of Brenna. It was totally against policy for all of us to be there around the clock, but they were really nice about it. The second day, the doctor came in to meet us and talk about the results they had at that point. This is where it gets really hard. We knew Owen was having the "big" seizures. We were wondering about some of the twitching and jerking he was doing at night and we were beginning to suspect that some of the tripping and falling he was doing was actually seizure activity, but we didn't know for sure.  The doctor confirmed all of our fears and more! It turns out that Owen NEVER had normal brain activity. He had constant spike wave patterns that moved over every area of his brain. Not a single part of his brain was unaffected. Most of the time the activity didn't turn into a true seizure because it didn't stay in one place long enough. He did manage to have several instances of true seizure during the day however and nearly non-stop seizures all night long. That was a lot more than we had been expecting to hear. The doctor told us she had no idea how Owen was functioning (long pause) as well as he was.

We ended up in the hospital for 6 days. Owen did finally have one of his (newly named) "big" seizures, as opposed to the little ones he was apparently having all the time. Our new neurologist told us that brain surgery might still be an option, but only as an absolute last resort to get the large seizures under control since the two we had on record did originate from the same spot, but that we would have to go into it knowing that it wouldn't solve the whole problem. We removed one of his medications that didn't seem to be helping and started a new medication that did help bring the "big" seizures to every 6-10 weeks instead of every 3-14 days. She also talked to us about the Ketogenic Diet. As soon as she mentioned it, I knew we would be trying it. We decided it wasn't going to work at that time though because of all the eating issues we were still dealing with. That was actually the only issue we had during our hospital stay. Owen ended up eating chicken strips and stuff we brought from home the whole 6 days we were there, because he refused all the other hospital food.
Saturday, we got Owen all unhooked, a pretty long process. I don't think all the gunk was actually out of his hair for a week. Owen had been telling us all week that the probes and wires were hurting him. We kept telling him that they didn't hurt, they just felt funny. Well, when they pulled everything off he had open, raw, oozing wounds. It seems that in addition to tape and plastic, Owen is allergic to the EEG adhesive. Unfortunately, frequent EEG's are pretty much unavoidable with Owen's disorder. Now, they are trying to not do any longer than 24 hours, he gets red from that, but only had a few open wounds. There are a few places where his hair has never grown back.
 As soon as I got home I ordered the Charlie Foundation Starter Kit and This Book, and This Book. We started testing some of the recipes (we never gave full Ketogenic meals since that can be dangerous) and making small changes to Owen's favorite meals to bring them slowly, slowly closer to something acceptable on the Ketogenic Diet.
About 6 months later, Owen's seizures had started coming closer together again and we had him eating a greater variety of food, so we told the doctor we were ready to try the diet. Two months later, we entered the hospital again for our diet initiation. It's now been over a year since we've called an ambulance and over 7 months since his last seizure. His EEG in March still showed the abnormal brain waves, but no actual seizures! We made a few changes to medication and the diet and he goes in on Monday to see if we've managed normal brain activity yet. Wish us luck !

Baby Carlitos!

On Sunday, Rod, Connor, and I headed to Seattle to see baby Carlitos, and his Mommy and Daddy, of course.  Carlitos is over 4 lbs now and is starting to breastfeed! We got to hold him for the first time, but, although I remembered to pack the camera, I forgot to check if it was charged. I only got a few pictures before it died completely. Luckily, Kristi had remembered to charge her camera so she got pictures of us holding him.

He was being so cute, that I told him I was going to take his picture and his response was to cover his face with his arm.

His Mommy moved his arm out of the way so I could get the picture anyway. We don't use a flash on him since his little eyes are still so sensitive.

He has the tiniest little hands!

This is how he holds his pacifier.

While Kristi was holding him, I noticed that he has exactly the same cowlicks on the back of his head as Owen has. I've always thought that Owen's had a very unique pattern so seeing that Carlitos has the exact same ones was pretty surprising. Genetics is a very interesting field. I'm always surprised how things pass down. Owen is only Carlitos's half uncle from a purely genetic standpoint. He also has the same long, skinny fingers Connor has. I've always assumed that came from my side of the family, but Carlitos doesn't share any genetic material with me.
After playing with baby for a while, we took Kristi and Simon out to dinner. Then we headed home to give Owen his medication and put the other kids to bed.
We're going down again on Saturday with the whole family. The younger kids won't be allowed to see baby, but Kristi and Simon have an apartment nearby they can stay at while the older ones visit. I can't wait to see the little guy again! I can't believe how well he's doing.

Welcome Carlitos!

Kevin Carlos made his appearance two months early! He was born at 32 weeks and 2 days gestation, on both Good Friday and his Papa's birthday! He weighed in at 3 lbs 12.6 oz  and 17 inches long.

The little preemie hat I made is almost too big! It fits without any stretching at all.  He hasn't worn the little booties yet since he has too many cords and monitors on his tiny little feet.

Last week Kristi was transported by ambulance to Seattle for severe pre-eclampsia. We thought we were going to have a baby that day, but the doctors were finally able to get her blood pressure down to tolerable levels. Devon went down on Tuesday and stayed the night since she doesn't have class on Wednesday and Rod was able to visit on Wednesday. By Wednesday night things were looking better and the doctors were feeling more confident about keeping baby in until 34 weeks.

Then on Friday, baby started having irregular heart patterns and wasn't moving as much as before. Rod and I got a call from Kristi, as she was being wheeled in for a c-section that baby hadn't moved in over half an hour and that his heartbeat was dropping down to 70 and then raising as high as 200. We set up Owen's medications for the other kids to give him and then jumped in the car for the trip to Seattle.

When we got to Seattle, Kristi was in recovery and Carlitos was doing great! He was screaming when he was born and after a bit of suctioning, has been breathing completely on his own.

After a few hours in recovery we all got to wheel Kristi down to the NICU to see baby Carlitos!

Once we got Kristi back up to her room, Rod and I headed home for a few hours sleep. The next day Devon and I headed back to Seattle so Devon could meet baby too! I think Connor is also old enough to go to the NICU, but the other kids will have to wait until the little guy is bigger before they will get to meet him.

He is getting expressed breast milk through a tube, but he's already showing signs of hunger and he's starting to suck a pacifier. Kristi plans to nurse once he's big enough. Now that Kristi's blood pressure is stabilized a bit she's able to visit the NICU and have skin to skin "kangaroo" time with him. Kristi will probably be released on Tuesday, but Carlitos will be in the hospital for about a month.

I am absolutely in love with these tiny little feet!

We are so happy to have him here but he's really tiny and will need a lot of care for a while. We're hoping he gets to come home soon so we can all see him!