Monday, March 29, 2010

A Very Rainy Trip

I am writing from Portland OR tonight. We drove here yesterday in the nasty rain. Driving in the rain, on the freeway in a little Kia....is not the most fun. Especially in the dusk hours and in the dark, no moon night. But we finally made it here, wet and tired. The kids jumped around like crazy, happy to be out of the car after 6 1/2 hours. And they surprisingly went to sleep very easily. Angel was out in minutes of laying down, Ayden and I shared bed time stories for about 20 minutes before he was asleep, they both slept hard. I, however, hardly slept at all. I was awake to see the clock at every hour and tossed and turned. When my alarm finally went off I was relieved that the night was finally over.

Waking the kids is never fun, but I finally got to get in Ayden's face and say "Ayden, its morning time, wake up!" This is what he does to me every morning. We had some quick toaster waffles and were out the door. Thankfully Cheryl lead the way to the hospital, Nathan and I are not great navigators of the city. The rain was still pouring down, making the freeways a nightmare in my little car. In an hour of morning traffic we got to the Doernbecher Children's Hospital at OHSU.

It is such a nice facility, with friendly people at every desk. We were looking for the purple chipmunk desk on the 7th floor, and luckily went in the right door to make it there quickly. We didn't have to wait long to see the doctor, which was nice.

The first appointment was genetics. The last time we saw genetics was 4 1/2 years ago. When we went to the genetics research facility in Spokane WA. At that time they said here is a picture of her chromosomes, and here is the ring....there are no other cases recorded with this chromosome combination and we have no information for you. And, with a frown, I tell you that we got pretty much the same information. There are several cases out there with ring chromosomes, and cases with 8th chromosome abnormalities, but not really any that are Ring 8 Chromosome. So Angel is just Angel, and like no other.

We did learn that the cases when her arms and chest turn blue are normal and not a risk to her health in any way. That is a relief, its kind of scary when her arms are such a dark blue/purple.

So after the genetics appointment we were off to the neurologist. Dr. Hoch was very nice. Its hard when the doctor is asking us for our questions, when we don't know what to ask except "what is going on with my child and how do we stop it". He said that based on my episode log and description of them; paired with the EEG that she had done a few months ago, these are definitely seizures.

To us these seizures are very serious and feel like the world is ending every time. He said that they are actually mild, and we should worry when they last more than 4-5 minutes, or she is having several of them in a week, consistently. Medications are tricky and can be harsh to her organs or development. She is so small and already so delayed that we feel unsure about taking those risks, if these are indeed, mild.

He referred us to a pediatric neurologist in Spokane, which is much closer for us to travel. He said that we should have a new EEG done as well as an MRI. These aren't things that can be done the same day, so we won't be able to do it in this trip. Hopefully these tests will help see these seizures a little more clearly, helping them to diagnose and medicate more accurately.

We finished up the night with some Olive Garden, and now we are getting the kids in their pjs. Hopefully the rain will let up some in the morning when we head back home.

Wednesday, March 24, 2010

Getting Ready for the trip to the childrens hopsital

I guess I have proven that I am not good at blogging. Its been a month since my first post...but I am trying to get everything in order around here. I am trying to be better!

I left off last time as Angel was just diagnosed and starting therapy. I am going to skip forward some, to catch up to now. When angel was 2 she had her first seizure. It was a matter of her stopping breathing. The doctor x-rayed her chest and diagnosed that she choked on something. It was several months later before it happened again. This time the ER doctors diagnosed asthma and gave her a breathing treatment and an inhaler. For 3 years we used and inhaler and dealt with these stop breathing episodes, thinking it had to do with asthma and seasonal allergies. We made several visits to the ER for breathing treatments and more inhalers.

I call these "episodes" because they are very odd situations. It is very quiet. She will just lay down on the floor, or squat down and put her hands on her face. If you weren't watching closely you would think she was resting or dizzy from spinning around. But when you pick her up and look at her face you will see that she isn't breathing. Most of the time her face turns blue. Her eyes are fixed to the side and she is not responsive to her name being called. I will immediately lay her down on the floor, calling her name loudly while also blowing into her face. If she does not respond to me in just a few seconds I will give her a big breath (CPR) letting her lungs fill and expel. I repeat the process until she starts breathing. Often her eyes will make contact with mine and she will touch my face. The color slowly comes back and she wants to cuddle. It only takes a minute and she is sleeping. She'll sleep for half an hour and wake up like nothing is wrong. She will go about her business and play, while I break down a little and cry. There aren't many people who have witnessed these episodes besides my husband, but those who have agree that it is one of the scariest things in the world.

November of 2009 Angel had four episodes in one day. She had no trouble with asthma or allergies. She had an episode in the morning, after it was all over we continued with our day. While at my in-laws home she had another episode. She had never had more than one in a day so we went to the ER. They checked her out while she sang and flirted with the nurses. Nothing seem wrong so they sent us home. It was only a few hours and she had another episode that evening. We rushed to the ER again and were admitted to the hospital for observation. She had another episode that overnight, which a nurse responded and recorded in her file. We stayed for another day and a half with no problems. The doctor ordered an EEG.

We learned from the EEG that she had abnormal spikes of activity in the back left area of her brain, leading her doctor to diagnose seizures. There are medication possibilities, but they can have harsh effects on her liver and/or delay her development. Because she is so tiny (only 26 pounds) and already so incredibly delayed I am not ready to start medication until I know a little more about this.

It has been 5 years since we consulted the genetics specialists, at that time they were not able to tell us anything about the 8th chromosome, especially her diagnosis. So we are off to the Portland Hospital OHSU to consult the genetics specialists there, hopefully gaining new information. We were lucky enough to also be scheduled with the pediatric neurologist on the same day, They have the EEG scans and will hopefully have a diagnosis and some good information for us.

So I say a little prayer and pack our bags. We are leaving on Sunday afternoon on a 6 hour drive (thank goodness we have DVD players for the kids). We will be staying with family and seeing the doctors on Monday morning.



Whew! got one more entry down! stay with me here, I'll get better

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