Sunday, February 24, 2008

long one

We decided that we’d have pictures of me and our kids (boys) when they were 6wks old. So far these are the 2 we have, and they’ve turned out really well I think. Just me and my boys. Nothing better.

We got back from California on Friday. We had a great time! We got to California on Tuesday evening, which I about got arrested. We stopped in Willows, CA and I started walking Bailey in an unauthorized area, and some manager came out screaming she was going to call the police on me. Oops!

Wednesday was a beautiful day, and so we rode the ferry to San Francisco. Maysen loved the ‘big boat’ and 'special train car' (trolley car) we got to ride on. He had a minding issue while we were waiting to load the tour boat that was going to take us to tour Alcatraz. The picture below is after I told him “not to touch the water”. Uh huh. Remind you of Nate, mom?

And here is Alcatraz ... I didn't know that before it was a prison, it was actually a fortress. Then the indians occupied it during the 60s-70s. Now it's a National Park.

Alcatraz was very neat. I love history anyway, so seeing the place that I once saw on Unsolved Mystery as a kid was great. They gave everyone Walkmans that you could listen to the Audio Tour at your own leisure and it worked out great. It was just a very mystical place.

The rooms in this place are amazingly small. I know, it's a jail cell, Leslie. But seeing it was a shocker. Sitting in that thing for years on end would drive me out of my mind!

Grandma Jo bought Maysen a harmonica and he entertained crowds of people with his new-found talent of harmonica playing. All he needed was the Tip-Hat. Griffin was in the stroller, so he slept most of the time. Poor kid hated his car seat by the time he got home. Our stroller sits his car seat in it, so he was in that car seat most of the time.

Maysen chased the birds until his feet were about to fall off. That didn't stop him from running from us on the boat back to San Fran, either. Once we were all on the boat, I dropped his hand for a second to see where everyone was going. In that split second, he disappeared. Scared the life out of me! People were just staring at us while we asked for help in finding him. My fear was that someone had walked off with him. But, alas, here he comes waltzing around the corner wondering what the big stir was about.

Afterward we walked the Wharf and saw the sea lions. Dad and Maysen rode the carousel, which Maysen loved. It was a rip off, but what isn’t these days? As we rode the ferry back, we saw the moon eclipse and that surprised us as we didn't realize one was supposed to happen that night. It was beautiful sailing away on the ferry looking back at the city at dusk with the eclipse happening. It was great.

Thursday was a wet and windy day. We relaxed and Maysen helped grandma Jo make pie and then he did his favorite thing: play with the “boodies” (birds), Pacho and “Chacho” (Nacho). He loves those stinkin’ birds.

We had our taxes done yesterday. Man we can’t catch a break! Besides all these medical bills we have from me having pre-eclampsia and in the hospital, delivery, Griffin sick in the NICU, Nate hospitalized … we just found out we owe $3,400 in taxes this year. We’re taking donations (kidding!). Sheesh … when it rains it pours around here. This past year has been tough on just about everyone I know!

And last but not least, we got the results on Fin's EEG done at OHSU. It was read as "mildly abnormal". Luckily there was no seizures noted or anything like that, but what was noted was that he had a "lower seizure threshold" in his left hemisphere, meaning that it's not as protected against seizures (if they were to occur) than his right hemisphere. Because of that, Dr Koch is not going to taper him off his phenobarbital as soon. He is going to let his body outgrow the dose he's on now (keeping him on it and not increasing the dose as he grows) and then we'll do another EEG/MRI in May when we see him again. This abnormality is "normal" in about 20% of kids, and is usually outgrown by the age of 5. This could have been his problem all along - the fact he has this lower threshold and then he got really sick/high fever, his body just gave way. He's still doing great now, only waking once to eat at night and that's at 5:30am! *knock on wood*

Monday, February 18, 2008

Mmmmm...

Today was gorgeous! It was just over 60 degrees and the sun was shining bright in the blue sky! We also grilled burgers and I got a hint of spring as the aroma of BBQ drifted through the open screen door and windows. What would have made it more perfect is if someone would have been mowing. Ahhh, spring is on it's way.

We're heading to California tomorrow to visit my dad and stepmom. I'm looking forward to going to San Francisco and riding the trolley cars! Not to mention having Dad and Jo squeeze on Griffin and Maysen is already looking forward to tractor rides with Grandpa. Have a good week!

Saturday, February 16, 2008

Poor Bay :-(

Today the boys went on a walk with Bailey to the park. On the way home, they walked the normal way and past the “colorful” house with the loud dogs with Maysen riding on Nate’s shoulders. Out of nowhere, 2 pitbulls were behind Nate and surrounding Bailey and immediately started attacking her. Instinctively, Nate kicked one dog and yelled at them to go back into the yard. Thank God they did. There are a few other situations in my wandering mind that could have happened. One being that the dogs didn’t stop and killed Bailey, as Nate wasn’t going to put Maysen down off his shoulders and help; Another being that they turned on Nate and attacked him.

Nate went up and knocked on the door. It was answered by one of the 3 unattended children. When the mother finally came to the door (awakened from her nap), she blamed the children for them being out. Later, we called the police and they came and took a report. They informed us that the family was going to be fined $1500. I am not out to “get’ this family – but I am fearful to walk past that house again and am scared for the multiple kids I see living/playing around that house. I also am so thankful that it was Bailey walking beside Nate this afternoon – not Maysen. I can’t even begin to think that way … Maysen said when he got home "Those mean puppies bite Bay?"

Bailey's OK. She had about 6 really deep puncture wounds. She seems sore in some places, especially a really swollen area on her back. I'm concerned that vet bills may arise as I'm fearful a Addisonian Crisis may occur since Bay has Addison's Disease. This family doesn't seem to be the type who would financially take care of that if they needed to, so could get ugly. Judge Judy here we come!!

Friday, February 15, 2008

Big Day at OHSU

Let me back up to yesterday at 1pm when we met with Dr Herbert re: Fin's RSV. She said he was doing actually better - although still a bit tight in the chest. Reluctantly, she let us go. We headed up to Portland in anticipation of this morning's meeting with Dr Koch.

The appointment went really well. In a nutshell, he said:

  • Griffin's MRI is really an unreliable tool in diagnosis basically becuase MRIs on brains that small are so hard to perform/read. Their brains are so underdeveloped, there's a greater amount of water in the brain than a normal adult brain, and angles on a brain that small can make things appear that aren't truly there. What they DID see that was read as an abnormality looked appropriate for the infectious process that he had.
  • Developmentally, Griffin is right on target - if not more advanced for his age.
  • He is combining Griffin's phenobarbital to only be given once a day instead of twice - and at night so he'll sleep all night. With that said, he said he was comfortable tapering him off Phenobarbital starting the first week of March, if the EEG done today proves normal. Unfortunately, the tapering process takes 6 weeks to do. So, we'll be done with Phenobarbital by April 21st.
  • Griffin had a repeat EEG after all of his seizing activity in the hospital. The fact that it was completely normal 4 days later was amazing because if he had a major problem, despite phenobarbital, there would still be some brain (not physical) activity on the EEG 4 days later. This is reassuring.
  • We are doing a follow-up MRI but we're doing it when his brain is more developed at 5-6mo old. The older the brain, the more reliable the image.


Dr Koch was very reassuring and confident. He was a spitting image of Dustin Hoffman in Meet the Fockers - it was great! I'm very thankful Nate's mom came with us - just the extra support was nice. We stayed in the Marriott downtown and man that was a nice place!! We parked Valet and I used to think the extra $ it cost was just a waste of money ... but it really is worth every dime!

Nate gave his notice and because he works on an assignment-basis, they told him he didn't need to stay 2 weeks. So he's taking next week off and starting the following Monday at Weyerhaeuser. We might head to California to visit my dad and Jo while he's off. They haven't gotten to really see Griffin, as the day they came to see him we were admitted to the NICU.

I'm fried right now and so I'm taking a hot shower and going to bed. Thank you all to the thoughts and prayers. It seems they've been answered and there is a major weight off my shoulders!

Wednesday, February 13, 2008

Happy Valentines Day!

Hearts, chocolate, cupid, cheap sugar hearts with random cute sayings imprinted (usually sideways) on them = Valentines Day. I hope that you got warm fuzzies today from someone.



We have entered another Chapter in the Saga 'o Griffin. On Sunday Maysen got (another) cold. Although we made him wash, wash, wash it didn't help. Last night Griffin began to not breathe real well. He was starting to wheeze and grunt and wouldn't eat. Through the night didn't sleep and eating became even more work. So I took him to the doctor today who diagnosed him with severe RSV. She immediately said he needed to be back in the hospital. GREAT. Upon talking with her and reminding her that we are heading to Portland tomorrow afternoon for our OHSU appt on Friday, we decided to try some breathing treatments but she wanted to see him again tonight and if he wasn't better/worse she was admitting him. After FINALLY getting the Albuterol to put in the nebulizer machine and giving him a treatment I noticed a big difference. He no longer grunted, no nasal flaring, no color changes, and ate 3oz right off the bat. We went back in at 6pm to see her and although he didn't sound any better in the lungs, because he was acting better she decided to let him come home with orders to go to ER or call her if he got bad/worse. She does want to see him one more time before we leave town tomorrow, so we'll be doing that.



On a good note: Nathan got offered a job at Weyerhaeuser today. It's more $$$ than his current job, benefits are WAAAAY better, and retirement perks are so good that we'll (he'll) be set for a long time, not to mention that they'll reimburse him for tuition he paid for getting his degree. Oh - and if we want to adopt a baby someday, they'll help with the finances of that. What a great company. I'm proud of him: it's been his goal to finally get to work there. I'm proud they tracked him down upon getting the OK to hire someone even though Nate's been gone for almost a year. I'm proud that he's getting to do what he wants to do....



I got my warm fuzzies today: A Dust Buster. Don't ask ... it's a problem I have!


Happy Chocolate Day! (that's what the real name should be!)

Monday, February 11, 2008

Clarifications:

Note in the picture in post below of Maysen and my comment of "Glimpse into the future". You have to note he's wearing mommy's stethoscope - and I'm hoping perhaps someday he'll be a doctor. He's always saying "No! I the doctor!!"

Also, the Alli pills "help" ... but you have to do the majority of the work yourself (ie: eat right, exercise). You can't just pop it and expect to shed the weight. It's just a boost. We'll see if it continues to work ...

Saturday, February 9, 2008

blab

Doesn’t he look … cozy? And very snuggly, by the way! Wouldn’t you know all the batteries were out of my camera for Bunko, but it was a blast. I feel like we’re a bunch of drunken sailors when we get together. Just a rowdy bunch … within reason. It’s a nice break to get away.

Is this a glimpse into the future? God, I hope so!!

This is my nephew, Jonas, driving Maysen’s racecar. They had a great time! Once Jonas got the hang of how to drive it he had a blast. He did end his trip, however, running straight into the back of his mommy’s van! That was when we just had to put up the racecar – our deductible is too high!

Speaking of dedictables, I’m battling the insurance company. Well, not really battling I just can’t get them to call me back. We reached our max out of pocket pay for 2007 and I’m still getting bills. So I call to go over why and compare what we have paid and what they have. Well, TWICE I’ve gotten “our computer system for that part is down, let me gather all the data and I’ll call you back.” Still … nothing. I’m not paying another bill until we get it straight.

Today we went to SPLASH, the indoor wavepool. Maysen is really loving water as he gets older. Nate and Mase had a great time! It wore both of them out, which is good. The weather was nice today – sunny and almost 60 so it felt good to get out. Tomorrow after the boys get haircuts, we’re going bowling!

Nathan has a phone interview with Weyerhaeuser on Monday. I’m not sure what God’s plan is right now. I have to keep remembering to be thankful that he's been blessed with having so many job opportunities vs not having employment, but it's frustrating, too. Nate left Weyerhaeuser in June because his contract was up and Nate really wanted a permanent job. He got a job at RealPro and although he really liked it, health insurance was $750/mo out of pocket and he wasn’t really developing like he’d like to – no freedom on projects. So, after only working there for 6mo he left and started working Jan 15th at Industrial Publishing. He really likes it there and is completely free to develop how he wants – he architects his own sites and makes his own calls, which he loves. Then, 2 weeks ago, Weyerhaeuser calls him and asks him to apply for the permanent position opening for the Denver, CO opening. See, in June when he left, Denver offered him a job sight-unseen. We didn’t want to move to Colorado so we declined. They’ve now decided that Nate could work from here FOR the Denver office. Nate struggles with wanting to be a loyal employee and hates the idea of having to tell Industrial Publishing he'll be leaving. However, if they’ll pay him more money and/or benefits are better he’d have to. You have to look out for #1 – and his true love has been working for Weyerhaeuser. He really enjoys building desktop software vs web development.

So, I’m trying the FDA Approved Weight loss pills Alli. I was skeptical, but they really are working! I was scared reading “oily anal leakage and/or diarrhea” as a side-effect but *knock on wood* have not had anything like that. Not even abdominal pain. How it works is that a portion of fat from food at your meals bonds to Alli and it is eliminated from the body before it is absorbed. You have to eat a low-fat diet and exercise for max effectiveness. I’ll keep you updated on how happy I am with it.

Wednesday, February 6, 2008

BUNKO!

We had professional pictures done this past weekend. With the combo of Jenn and I both with professional cameras, I swore that I wouldn't do this. However, we had them done with Maysen and we have a big wall picture of Maysen and I very similar to this, and vowed to do one with every baby. So here are some that turned out pretty cool. The feet on the bottom are actually Griffin and Nate's feet. We did that with Nate and Maysen, too. I also finally got Fin's birth announcements in the mail last night, so I got them all addressed and in the mail today. Gee, what's got me going??



Tonight I am playing BUNKO with acouple of girls from work. I started going a few months back before I got too miserable being pregnant and what a hoot!!! The game itself is pretty effortless and ... I wouldn't say "boring" but there's really no point to the game. But the girls we play with are hilarious and it's fun to get out of the house once a month and be a normal person. Some of the girls take this game pretty serious, too, so that's fun to watch. It's a bunch of women throwing dice hoping for pairs. Woop. I plan on getting some good pictures tonight, so stay tuned! And I haven't had alcohol in almost a year, so wine is sounding pretty darn good right now!



Griffin is doing great! Dr Pelinka and I talked and we are not going to increase his pheno dose until we see the docs at OHSU. His trough level looked good, so we're leaving it until then. Our appointment date is still Feb 15th .. I'm getting anxious!


This is the picture we chose to put beside Maysen's picture in our bedroom. It was the best out of all that were taken. I love that his eyes are open! He'll be 6wks old tomorrow. Can you believe it!?

Friday, February 1, 2008

More Loops

Griffin’s doing well now. He currently weighs 9lb 10oz. He’s over the respiratory stuff for the most part (thank the Lord!). Dr Pelinka got word from Dr Goins and I’ll try and make this as least complicated as I can:

When being discharged from the NICU, Dr Goins stated he was going to send his MRI to University of California to be read by a neuro-radiologist down there. Since then we haven’t heard anything. Dr Pelinka emailed him to see if we needed to increase his medication and to inquire about the MRI. Apparently, California had a different opinion on Fin’s MRI. They labeled a diagnosis of periventricular leukomalacia. A diagnosis like that usually means a prolonged period of no oxygen in a really premature baby, which hasn’t ever been the case for Griffin. That differs from what Dr Goins believes his MRI says … which differs from what OHSU said they think his MRI looks like. So, we now have THREE different opinons from 3 doctors.

Dr Pelinka admits that she isn’t real clear on what exactly Dr Goins’ diagnosis is, nor is she clear on the diagnosis given by the University of California. She is going to consult with Dr Goins next week to get a clearer picture as to his insights and Californias’ (as Dr Goins talked with California).

I increased his medication last night I have to express how terribly hard this is for me. I know that this medication is protecting his brain from any further seizures. Dr Goins is so passionate on keeping him on this so long because he has seen cases where kids who have an illness/seizures like this at a young age, when not treated in an aggressive manner, can develop a very dangerous form of epilepsy later in life – so dangerous that medications don’t help. I hate when we have to increase his meds because just when he’s getting used to his dose, interacting, moving, staying up longer, reactive … then we have to increase his dose and he goes back to being really sleepy. I feel almost neglectful in a way to be giving it – to see what it does to him.

I need continued thoughts and strength. I can’t he lp but feel that I’ve been cheated. Cheated in my time with my newborn – time that was stolen by worry, exhaustion, stress, frustration, fear, sadness. Don’t get me wrong. I love my son – and so thankful for now he’s healthy. Right now we’re in protection-mode with his meds but at the same time I want MY SON (med-free) back. I want to feel like I did the 6 days I had him home prior to getting sick. I feel like forever I will be worried at every illness, every quiet moment, every learning snag .. wondering if “THIS” was caused by his illness. I should be feeling fortunate that this is “all” that’s wrong with him.

On top of this all, my doctor call and I have strep throat. And I thought it was life catching up to me making me so exhausted.