Friday, September 16, 2011

We survived our first week!!!

Phew!! It's been quite a week. I feel like I've been on an enormous roller coaster. Thankfully, with each passing day the ups and downs of the roller coaster have leveled out a bit. It took a while, but we've all adjusted to the time change (Ethan went to bed between midnight and 1am, the first 4 days we were here!). The weather has been an easy adjustment, we had a few hot days, but the last few days have been cool, cloudy and rainy just like Eugene. After we got here, we had 3 days until Eric started his new job. We spent most of it looking for a place to live, and just adjusting to life in our hotel. Let me just say, trying to live in a hotel is WAY different than vacationing in a hotel. First of all, since we flew out here on Southwest, we were allowed to each check 2 bags. So, we had two large suitcases, two large boxes, two small suitcases, the pack and play, air mattress, and two back packs. This made our already small room quite cramped. But, it didn't seem to bother Ethan, he loved toddling around the room. He loves opening and closing cabinets and drawers, and enjoyed checking out all the new drawers in the dressers and bed stands. He wasn't sleeping very well in his pack and play, so since the second night, he's just been in bed with us, which he's quite happy about.

We took a break from the apartment hunting on Sunday and checked out a local church. It's a medium sized non-denominational church. Ethan LOVED the nursery, and Eric and I both thoroughly enjoyed the service. It was pretty funny to walk in and literally see about half the church wearing Baltimore Ravens gear. Apparently they're quite passionate about their team. It reminded me of being in Eugene on Saturdays, where suddenly the whole town turns green and yellow. There was so much about the church that reminded us of our church in Eugene, it helped us feel a little more at home. We're very much looking forward to going back this Sunday.

FINALLY! We signed a lease and got keys to our new apartment. The apartment hunting turned out to be quite difficult, but I feel God has led us to a great little place. We thought we had found an apartment, and I spent almost four hours there on Tuesday looking at several different units on two different trips. At this particular complex, the set up reminded me more of a hotel than an apartment. You walk into a main door, and then there's an enclosed hallway that's shared by six units. I walked through four different buildings, and the main hallways all smelled heavily of smoke. This wasn't a total deal breaker, but it was very disappointing. Eric and I both are really sensitive to the smell of smoke, and with all of Ethan's health issues, I really didn't want him to be around smoke on a regular basis. Plus, the leasing agent was quite a drama queen. Apparently she was new to the complex, and was less than thrilled with her job. She kept complaining to me how rough her day was, because she had two potential tenants lie to her about their credit, and it was already 1:30 and she hadn't had lunch yet ..... I just smiled and nodded knowing that if that was a "tough" day for her, she would never survive an hour in my shoes. Her stories of credit issues had me worried about if Eric and I would qualify. Obviously with our house up for a short sale, our credit isn't exactly stellar at the moment. As I was telling Eric that this place just wasn't coming together, he suggested that I check out a place that was recommended to him by a new co-worker. He had called the apartment, and the leasing agent ended up staying an hour after they closed so that we could come and check it out. It was great! It's considered a 1 bedroom deluxe unit. It only has one official bedroom, but it also has an enclosed den, it's the size of a small bedroom, but doesn't have a closet. It has a washer and dryer in the unit, and a decent amount of closet space. It's on the top floor, which means we have three, half flights of stairs, but no it'll be nice to have no one above us. The neighbors are SUPER friendly. Within 20 minutes of getting keys, we had one set of neighbors bringing us bottled water and gatorade, and another neighbor bringing us a 3x5 card with all her contact information. They were all very excited to have a young family in the building, and immediately fell in love with Ethan. It just really feels like this is where we are supposed to be, for now anyway.

It still have a lot of anxious feelings, and a whole lot of work ahead of us, but things are starting to look better. Eric has finished his first week of work, and so far is really enjoying it. The company is very different in every aspect. The new company has a much stricter structure, but the employees are much more laid back. Eric has been in training mode this whole week, and is getting his first real assignment on Monday. Now that our main goals for this trip have been accomplished, we're all very much looking forward to a relaxing weekend.

Pictures to come soon!

Saturday, September 3, 2011

4 Months?!?!

I can't believe it's been 4 months since I've blogged! I think about my blog frequently, just haven't taken the time to post. Our family has had a TON of changes in the last four months.

Diagnosis-
We finally have a diagnosis! SCADD- Short-chain acyl-CoA dehydrogenase deficiency. Basically that means that Ethan's body has trouble processing short chain fatty acids. I've had some trouble getting this all figured out, but I know for sure that butter, vinegar, and many preservatives and food additives contain short chain fatty acids. For now, we are feeding him mostly organic, minimally processed, foods. He's still eating mostly pureed food. He had a short time recently where he was really into table food, but unfortunately that has faded, and we're back to purees. They're really healthy, and he eats a range of things, so I'm not too worried abut it. As long as he's eating enough, I really don't care how he gets it.

Seizures-
Ethan had another round of seizures, and another hospital stay. On August 5th around 11am, Ethan had a seizure. He had a low grade fever. He's usually really out of it and REALLY clingy after a seizure. After such a traumatic event, I just can't bring myself to strap him into his car seat, and drive the 15 or so minutes to the ER. So, once again, we ended up taking an ambulance. About 1:30 that afternoon, while still in the ER, he had another seizure. They loaded him up with Tylenol, Motrin, and Valium, he drank plenty of apple juice, so they weren't too concerned about him getting dehydrated, and sent us home about 6pm that evening. After we got home, we couldn't get him to eat anything, therefore couldn't get his dose of Motrin in him. About 12:15am, he had his Tylenol, and was due for another dose of Valium at 12:40am. Unfortunately, a few minutes after he had the Tylenol, he had a third seizure. This time his temp had gotten up to 103.6. Back to the ER we went. They couldn't get any Motrin in him either, and the Tylenol wasn't lowering his fever. They basically doubled his Tylenol intake, and that finally brought down his fever around 6am, which is about when we were admitted into the hospital. Over the next few days, Ethan spent the majority of the time asleep, and barely ate or drank anything. Saturday he had two very small seizure episodes. Sunday night his fever broke, and by Tuesday morning we were finally discharged. Even though Ethan's always had a fever when he has a seizure, they're concerned about the number of seizures he's had. Including the two mini episodes he's had a total of ten seizures in 11 months. Now, they want to start him on Keppra. He hasn't started quite yet for various reasons, and now it's possible we'll wait until we're settled in Maryland before we start. We're waiting to hear back from our Pediatrician who is consulting with the Neurologist.

Hearing Loss-
Kids that have severe language delays, commonly have a hearing screening around 18 months old. Ethan had a hearing test about a month ago. First they test the pressure, it was normal. Then they test for otoacoustic emissions, his were absent (abnormal). The Audiologist said that it's possible that he was just too wiggly to get an accurate reading. Then, they did a behavioral test. We sat in a small room, and there were speakers in multiple parts of the room. There were also toys that moved and made noise, near the speakers. The Audiologist said that Ethan didn't respond to anything below 50 decibels. She said it was possible that he just didn't care, but that between the absent otoacoustic emissions, and the abnormal behavior test, she wanted to move forward with an ABR (Auditory Brainstem Response). It's a test that measures the brainstems response to sounds. This past Wednesday, we visited the Audiologist, and she repeated the previous tests. This time he had negative pressure in his ears (a precursor to an ear infection), still had absent otoacoustic emissions, and tested the same for the behavioral part of the test. We were all set for the big test, that happened yesterday. Because the test requires you to be still and quiet for 2 hours, they usually sedate babies. We arrived at the hospital at 6:30am, got checked in, prepped, and were ready to go. We got to stay with Ethan until he was asleep from the anesthesia. Two hours later, the Audiologist came back. She explained to us, that Ethan had mild hearing loss (approximately 35%), and that she wanted him to get fitted for hearing aids right away. As much as I knew this was a possibility, I was still a bit shocked. Basically, if Eric and I are having a conversation, if we're holding Ethan he can probably hear just fine, but if he's about ten or more feet away, he probably can't hear it. His type of hearing loss is considered neural hearing loss. This means there's been some damage to his auditory nerve. At this point, we have no clue what could have caused this. This will definitely through a kink into our moving plans (explained below). Right now, Ethan is currently insured through the state of Oregon. It's been such a huge blessing, because we currently have no costs for his medical care. Because of that, and the fact that we're already established with doctors here, I really want to get the hearing aids taken care of here. We'll just have to be patient, and see how it all plays out.

Summer Vacation!-
In the end of May, Eric was one of four people that got laid off. Without going into details, we'll just say we considered it a huge blessing and a huge relief. Obviously this also made things a bit complicated. Eric had numerous phone interviews, an in-house interview in both Austin Texas and Baltimore Maryland. Although it put us in quite a financial bind, we've had an amazing summer with Daddy at home. We've enjoyed endless trips to the park and pool, a trip to Lake Tahoe, Coarsegold, the Bay Area, and Middletown. Ethan got to visit 3 sets of grandparents, and meet his new cousin Ben. All in all, it's been a great summer.

Maryland-
After much searching, Eric found a job at a company called Zenimax, in near Baltimore Maryland. He starts on September 12th! We're in the process of trying to figure out how to get out there. All three of us will be flying out next Thursday the 8th. Eric will be there permanently, but Ethan and I will come back about a week and a half later. Hopefully in that time, we will find a place to rent, and start getting things settled. When Ethan and I get back, my Mom will come up to Oregon, and help us finish getting the house packed up. Then Ethan and I will join Eric permanently in Baltimore. Sometime in all that, we'll hopefully get Ethan's hearing aids figured out, plus there's a few other medical issues to get worked out before we head out there for good. It's going to be a HUGE transition. We've made some incredible friends here in Oregon, and even though it's far, it's been nice to be in driving distance of our family and friends in California. But, Ethan has grandparents, great grandparents, aunts, uncles and cousins on the East coast, so it will definitely be nice to be near that side of the family. Plus, I've heard nothing but amazing things about John's Hopkin's Hospital, so hopefully if anything our medical care will only get better. I think I'm the most excited go be near so many baseball teams!! I grew up a huge baseball fan, and can't wait to check out the stadiums in the North Eastern part of the country.

Phew! That's the short version of what our last few months have looked like. I've really missed blogging, and hope to get into a more regular rhythm.

Tuesday, May 3, 2011

Busy

We've been super busy over the last 2 months. Ethan and I went to North Carolina for a week, my Mom came to Oregon for a week, and then Ethan and I went down to California for a week. Mixed in with that, I had the stomach flu for several days, and a chemical pregnancy. Ethan some how caught parianal strep, aka "butt strep". Eric has been super busy at work, and I've been trying my best to keep up with my quilting business. We also found out that Ethan's skin biopsy came back negative. That means he does not have Glutaric Aciduria Type 2. He's now had a blood test, which will check for Short-chain acyl-COa dehydrogenase deficiency (SCADD). If that comes back negative, we're back to square one with no real direction. Anyway, those are the big details of the last 2 months, I'll post more details and pictures soon. xoxo

Thursday, March 10, 2011

I love Ethan.

www.babycenter.com is a social networking site geared towards moms. There's hundreds of "clubs" that you can join, based on things you or your babies have in common. For example, there's a club for every birth month. So, I'm a part of the "November 2009 Birth Club". I'm also a part of the "Delayed Darlings", "Low Muscle Tone", and "PKU, Low Protein, and Other Metabolic Disorders" groups. Until finding these groups, I've felt very alone in dealing with a lot of Ethan's medical issues. It's been wonderful connecting with other Moms who are also dealing with the very common issues that come along with parenting a "Delayed Darling". Recently, someone started a thread called "What I Love", and this is what it said:

"Since I'm a little sad today, I thought I needed a pick-me-up, and to remind myself how lucky I am to be Trevor's mommy.  He is truly the greatest kid ever.  So this is what I love about Trevor.  Share what you love about your LOs too!
I love his smile, his laugh, his red hair, his pudgy thighs, his curiousity, that he loves books so much it borders on obsession, that he hugs his stuffed animals and gives them kisses, how he scruches up his nose when he's in a silly mood, the way he says "mmm" when he's enjoying his food, how he claps his hands when we say "good job" and how he's so proud of himself when he uses his walker."

I REALLY enjoyed reading what other mommies had to say about their kiddos. This is what I shared about Ethan:

"I love Ethan. I love his smile. I love the way he holds onto me as I'm holding him. I love his enormous belly laugh. I love how his eyes light up when I walk into the room, even if I've only been away a few minutes. I love that he equally enjoys both me and my husband. I love the excitement in his face when Skype starts beeping because grandma is calling. I love the crazy things he does with his flexible hips. I love the way he giggles when I sneak up on him. I love the look he gets, when he understands something new. I love the smiles he gives to strangers, and the attention he gets from the grocery store clerk. I love the way he snuggles into me, as he falls asleep. I love that he clearly has his own taste in music. I love that he's both a night owl, and an early bird. I love Ethan."

Since I wrote this, I've mentally added dozens of things to this list. I had a particularly rough day yesterday, and it was so therapeutic to just sit and think about all the wonderful things I love about my little munchkin. It's so easy to get wrapped up in "life", and to forget about the things that really matter. No matter how hard my day is, at the end of the day I have this amazing little boy who couldn't possibly love me any more.

Friday, March 4, 2011

Waiting......

Last October, Ethan had a skin biopsy. We were told it would take 4-5 months to get the results. At first, that felt like an eternity. I was so anxious at the thought of waiting that long, for what should be a firm diagnosis for Ethan. As the weeks passed, the anxiety faded as I know it really won't change anything. With either diagnosis, he'll still be at a higher risk for hospitalization when he's sick, he'll still need long term therapy to address his developmental delays, and most importantly, he'll still be one of the happiest, cutest babies around. However, it's now been just about 5 months, and all of the anxiety and "what ifs" are coming back. What if the test comes back without a diagnosis, what if the result is something other than what the doctor thought it would be, what if..... I could go on for quite some time. But, that's not healthy. So, for now I'm trying not to worry about it. At times it feels easy, and at times, it feels impossible. Either way, I don't really have a choice.

Wednesday, February 23, 2011

Blogging Strike.

I've been on a blogging strike lately. The strike is now over, and blogging will now commence.


Ethan has had 4 PT sessions so far. Ethan has worked a lot on pulling to stand, and then transitioning back into a sit. He's gotten really good at standing, but still just plops down to sit. Now, whenever he wakes up in the morning, or from his nap, it's such a delight to walk into his room and see him standing in his crib with a huge proud smile on his face. Ethan is now trying to stand up at anything he can grab onto. In the first couple of sessions, they also worked really hard to teach Ethan that he can bear weight on his arms (like in a crawl position). Because of his low muscle tone, this is something that's very difficult for him. Once they pushed through it, he quickly learned that by doing this, he is able to scooch! He started out doing this on the kitchen floor, and within 2 or 3 days was scooching all over the carpet. It's still a bit difficult for him, but it's rewarding enough that he's willing to push through. The physical therapist has also been working on walking. Ethan has gotten pretty good at holding onto our hands and walking around. He really enjoys it, and it allows him to have much more control over where he goes. Now, when he gets bored, we stand him up and he can walk to where he'd like to play next. He's made so much progress since starting PT. It's been very exciting.

Last weekend, we took a day trip up to Newport to visit the aquarium. We got there mid-afternoon, and Ethan hadn't had a nap yet. I was afraid he was going to be grumpy, and not enjoy it because he was tired, but he had a great time. He loved watching the fish, and walking from tank to tank. He's also become quite a people watcher. He especially loves watching other little kids run around. As we left the aquarium, it was super windy. A storm was on it's way in, and it made for quite an interesting drive home. All in all, our family outing was quite successful.

The last week has been a bit rough. I'm really not sure what's going on with the little man, but it's starting to make me worry a little bit. He's been really moody lately, sleeping very poorly, and just doesn't seem to feel well. He's been really early on all of his teeth so far, so I think it's possible he's getting his 2 year molars in. I know they haven't erupted yet, and it's hard to look back there, so I can't tell for sure. Regardless, I definitely hope whatever is bothering him passes soon. He has his 15 month check up with his pediatrician tomorrow, so hopefully she'll have some thoughts on what's going on.












Monday, February 7, 2011

Scooching!

video 

 
Ethan started Physical Therapy almost 2 weeks ago. He's changed leaps and bounds since then! I'll give a more detailed update soon, but this is our latest accomplishment. :)