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!
Friday, September 16, 2011
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.
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.
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.
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!
Thursday, January 20, 2011
Little did I know.....
I didn't actually think that "Seizure Watch" was going to include a seizure. At this point, anytime Ethan has a fever, a seizure should be somewhat expected. Even though I know this, it still really catches me off guard, and is very difficult for me to go through.
What happened?
I had some recent confusion about Ethan's Tylenol dosage. I thought he could only have it every 6 hours. Which was the case when he was on infant suppositories. Now that he's older he can have it every 4 hours (which I was unaware of yesterday). So, around 3:00 (4 1/2 hours after the initial Tylenol) his fever started coming back. I called in to the advice nurse to see what I could do. She let me know he could have more Tylenol, so by 3:30 it was back in him. By this point, it was clear he wasn't feeling very good. He seemed sleepy, but wasn't going to sleep. He was very snuggly, so I just held him and sat in bed, relishing in the extra baby snuggles. Usually the Tylenol starts to kick in within a few minutes. This time, that was not the case..... By 4:00 his fever was still around 100.3. This isn't very high, but for Ethan it doesn't have to be very high to be problematic. At 4:09, the seizure started. Ethan's eyes suddenly popped wide open, and he let out a very scared scream, and then started seizing. The phone was next to me, so I called 911, and tried my very best to stay calm and patient. Ethan became a tad alert about 7 minutes after it started. One of the EMT's remembered us, from back in August. This time, we had a lot more information for him. They read over the letters from the metabolic doctor, and our pediatrician, and lovingly held Ethan as I got a few things together, and made a quick call to Daddy to let him know he needed to meet us at the ER. We quickly got in the ambulance and were off to the ER. I started feeling silly for taking an ambulance to the ER, but the EMT was very quick to make sure that I knew it was the right thing to do, and that I should never feel embarrassed about it.
We got to the ER, and quickly had a team of nurses preparing to get an IV started. Three different people looked at him, and one finally decided she was up for the task. She was able to get the IV in, but for some reason was not able to draw blood from it. So, they asked someone from the lab to come down. In came a loud, slightly obnoxious, tech who took about 30 minutes to poke Ethan in his arm, and ankle before she decided she wasn't going to be able to draw blood..... Ethan was not happy about this..... She finally decided to do a heal prick, and draw blood from there. It worked, but was excruciatingly slow. Eventually, the blood was drawn, and we were finally left alone. During the ins and outs of the blood draw, the ER doctor came in to evaluate Ethan, he quickly found a double ear infection. Ethan's pediatrician Dr. Pelinka came down to visit us, and came up with a plan, which she relayed to the ER doc. They were going to give him a few hours of his special IV fluids, add some antibiotics, and then we should be on our way. By 8:00 I realized that he was getting hot again, and that he was supposed to have Tylenol at 7:30. I asked the nurse to bring some, it was there around 8:15. Before they gave the Tylenol, they checked his temp. It was up to 102.9!! I was really shocked. I knew he was warm, but he had for the first time since his seizure, started perking up and seeming like he was feeling better. So, apparently at 100.3, he has a seizure, but at 102.9, he feels great.... Only Ethan! I was SO relieved that he didnt have another seizure. His seizures are so inconsistent, which is quite confusing. The Tylenol slowly started kicking in, and within the hour the fever started coming down. Finally by 10:00 they were ready to start the antibiotics. The IV was causing some issues, which Ethan was not happy about, but they finally got it started. About 45 minutes later, we were finally ready to come home. We got home, bathed Ethan, and were ready for bed. Eric stayed up with him while I got a little sleep. The fever was coming back again, and at 12:15 we were able to give him some more Tylenol. Again, the fever was very slow to go away. Eric ended up laying on the couch while Ethan slept. He kept a close eye on the pesky fever, and was up until 4:30 with him, at which time he brought him upstairs, we re-dosed him, nursed him, and all fell asleep on our bed. Ethan woke up around 8:30, and seemed to be in a pretty good mood. The fever has still been around a little today, but nothing like yesterday. Eric and I have taken turns getting caught up on sleep. This afternoon, we go back for a recheck of his ears, and an antibiotic shot.
It's still so crazy to me, that an ear infection can turn into such an ordeal. It's not easy, but we're getting better at handling it.
What happened?
I had some recent confusion about Ethan's Tylenol dosage. I thought he could only have it every 6 hours. Which was the case when he was on infant suppositories. Now that he's older he can have it every 4 hours (which I was unaware of yesterday). So, around 3:00 (4 1/2 hours after the initial Tylenol) his fever started coming back. I called in to the advice nurse to see what I could do. She let me know he could have more Tylenol, so by 3:30 it was back in him. By this point, it was clear he wasn't feeling very good. He seemed sleepy, but wasn't going to sleep. He was very snuggly, so I just held him and sat in bed, relishing in the extra baby snuggles. Usually the Tylenol starts to kick in within a few minutes. This time, that was not the case..... By 4:00 his fever was still around 100.3. This isn't very high, but for Ethan it doesn't have to be very high to be problematic. At 4:09, the seizure started. Ethan's eyes suddenly popped wide open, and he let out a very scared scream, and then started seizing. The phone was next to me, so I called 911, and tried my very best to stay calm and patient. Ethan became a tad alert about 7 minutes after it started. One of the EMT's remembered us, from back in August. This time, we had a lot more information for him. They read over the letters from the metabolic doctor, and our pediatrician, and lovingly held Ethan as I got a few things together, and made a quick call to Daddy to let him know he needed to meet us at the ER. We quickly got in the ambulance and were off to the ER. I started feeling silly for taking an ambulance to the ER, but the EMT was very quick to make sure that I knew it was the right thing to do, and that I should never feel embarrassed about it.
We got to the ER, and quickly had a team of nurses preparing to get an IV started. Three different people looked at him, and one finally decided she was up for the task. She was able to get the IV in, but for some reason was not able to draw blood from it. So, they asked someone from the lab to come down. In came a loud, slightly obnoxious, tech who took about 30 minutes to poke Ethan in his arm, and ankle before she decided she wasn't going to be able to draw blood..... Ethan was not happy about this..... She finally decided to do a heal prick, and draw blood from there. It worked, but was excruciatingly slow. Eventually, the blood was drawn, and we were finally left alone. During the ins and outs of the blood draw, the ER doctor came in to evaluate Ethan, he quickly found a double ear infection. Ethan's pediatrician Dr. Pelinka came down to visit us, and came up with a plan, which she relayed to the ER doc. They were going to give him a few hours of his special IV fluids, add some antibiotics, and then we should be on our way. By 8:00 I realized that he was getting hot again, and that he was supposed to have Tylenol at 7:30. I asked the nurse to bring some, it was there around 8:15. Before they gave the Tylenol, they checked his temp. It was up to 102.9!! I was really shocked. I knew he was warm, but he had for the first time since his seizure, started perking up and seeming like he was feeling better. So, apparently at 100.3, he has a seizure, but at 102.9, he feels great.... Only Ethan! I was SO relieved that he didnt have another seizure. His seizures are so inconsistent, which is quite confusing. The Tylenol slowly started kicking in, and within the hour the fever started coming down. Finally by 10:00 they were ready to start the antibiotics. The IV was causing some issues, which Ethan was not happy about, but they finally got it started. About 45 minutes later, we were finally ready to come home. We got home, bathed Ethan, and were ready for bed. Eric stayed up with him while I got a little sleep. The fever was coming back again, and at 12:15 we were able to give him some more Tylenol. Again, the fever was very slow to go away. Eric ended up laying on the couch while Ethan slept. He kept a close eye on the pesky fever, and was up until 4:30 with him, at which time he brought him upstairs, we re-dosed him, nursed him, and all fell asleep on our bed. Ethan woke up around 8:30, and seemed to be in a pretty good mood. The fever has still been around a little today, but nothing like yesterday. Eric and I have taken turns getting caught up on sleep. This afternoon, we go back for a recheck of his ears, and an antibiotic shot.
It's still so crazy to me, that an ear infection can turn into such an ordeal. It's not easy, but we're getting better at handling it.
Wednesday, January 19, 2011
Seizure Watch
I'm sitting here, officially on "seizure watch". Ethan had an abnormally rough night of sleep last night, which I now realize, he probably wasn't feeling very good. This morning, my friend Becky, and her daughter Brynlee came by to hang out. Becky noticed that Ethan was feeling a bit warm. Sure enough, he had a 100.3 fever. Inside, I immediately started panicking. He's had febrile seizures on 2 occasions, each time ended in an ambulance ride, and at least 1 night in the hospital. As you can imagine, the onset of a fever now causes me a bit of anxiety. Obviously me being anxious and stressed out doesn't help anything. Instead, I decided to "Mom Up" (you can read about my new favorite phrase here) I washed my hands, gently administered his tylenol suppository, and went back to bff chit chat. Now, Ethan is napping, laying next to me on my bed. I'm watching the Australian Open, and trying not to freak out at every little twitch. It doesn't make sense to me that if the fever is being controlled, that he still might have a seizure, but both my pediatrician, and neurologist were very clear that Tylenol does not prove to prevent febrile seizures. So, for now, we treat the fever, try to keep his fluids up, and just keep a very close eye on him.
Other than not feeling so hot today, Ethan's been doing great. He's got such a strong desire to move. He's working hard at trying to pull himself up to stand. He's still not quite able to do it, but his efforts are unmatched. In the last few weeks, Ethan's had a "Modified Barium Swallow Study", saw the Neurologist, and his pediatrician. During the swallow study, Ethan was hooked up to a live xray machine, and was fed liquids of different consistencies with die (barium) that showed up on the x-ray machine. It was really neat to watch. On the x-ray, would could see from his shoulders up. I was able to see his 2 year molars, sitting below his gums. They started out giving him thick chunky pudding, then a thick milkshake, then thinner milkshake, and ended with a juice consistency. He did well with everything except the thin juice. He doesn't actually swallow it, he lets it fall to the back of his mouth, it stops in his throat for a few moments, and then goes down his esophagus. They said that the way he moves food around his mouth, and swallows is a bit immature. This likely has to do with the low muscle tone, and just goes along with the rest of the delays.
The Neurology appointment went well. The Neurologist said that as long as Ethan has a fever anytime he has a seizure, they will continue to assume he has febrile seizures, and not a seizure disorder. He agreed with the pediatrician, that anytime he has a seizure he needs to go to the ER to have blood work done. Because of his metabolic disorder, anytime anything traumatic happens they need to make sure that the acids in his blood aren't out of control.
All in all we're doing pretty well. We've been filling our days with play dates, working out, working, and just living life. Things seem pretty hectic, but we're enjoying it. :)
Other than not feeling so hot today, Ethan's been doing great. He's got such a strong desire to move. He's working hard at trying to pull himself up to stand. He's still not quite able to do it, but his efforts are unmatched. In the last few weeks, Ethan's had a "Modified Barium Swallow Study", saw the Neurologist, and his pediatrician. During the swallow study, Ethan was hooked up to a live xray machine, and was fed liquids of different consistencies with die (barium) that showed up on the x-ray machine. It was really neat to watch. On the x-ray, would could see from his shoulders up. I was able to see his 2 year molars, sitting below his gums. They started out giving him thick chunky pudding, then a thick milkshake, then thinner milkshake, and ended with a juice consistency. He did well with everything except the thin juice. He doesn't actually swallow it, he lets it fall to the back of his mouth, it stops in his throat for a few moments, and then goes down his esophagus. They said that the way he moves food around his mouth, and swallows is a bit immature. This likely has to do with the low muscle tone, and just goes along with the rest of the delays.
The Neurology appointment went well. The Neurologist said that as long as Ethan has a fever anytime he has a seizure, they will continue to assume he has febrile seizures, and not a seizure disorder. He agreed with the pediatrician, that anytime he has a seizure he needs to go to the ER to have blood work done. Because of his metabolic disorder, anytime anything traumatic happens they need to make sure that the acids in his blood aren't out of control.
All in all we're doing pretty well. We've been filling our days with play dates, working out, working, and just living life. Things seem pretty hectic, but we're enjoying it. :)
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| In the waiting room for the swallow study. |
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| Prepping for the swallow study. |
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| After the swallow study, we met Hannah, Jackson and their mommies at the mall. |
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| Ethan is playing with his new friend Finley. |
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| Ethan and Addison hanging out at the Library. |
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| Brynlee is teaching Ethan how to hi-5. |
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| Ethan and I celebrating my birthday. |
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| We went to Red Robin for dinner on my birthday. |
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| Mirrors are cool! |
Saturday, January 1, 2011
It's time to bloom.
In the last few days, Ethan has REALLY blossomed. The night before Ethan's first birthday, he had gone down for the night, and like many nights woke up a few hours later. Eric went into his room to get him, and noticed he was sitting up in his crib. Eric was quite shocked to see this, as we had not seen Ethan sit himself up before. Then, a few weeks later, the night before his surgery, I found him sitting up in his crib. Both times he seemed a bit shocked, and not quite sure how he got there. Then, 2 days ago, Ethan and Eric were laying in bed. Ethan loves to lay with us, roll around on the bed, blow raspberries on our bellies, and just hang out. This time, Ethan was laying parallel to Eric on his tummy, he leaned in towards Eric, scooched his knees underneath himself, and slowly started scooching his feet underneath him until he was at a point where he could then just push up on his hands, and sit up. This was the first time we had seen him actually do it himself. In the last few days since then, he's done it a few dozen times. He's so proud of himself, and really gets a kick out of Daddy and I being excited for him. This seemed to really spark an interest in movement. For the last few weeks, he's been really interested in standing, and pulling up to stand. But it really seems like in the last few days, he's began to put the pieces together and is really figuring out how to do things on his own. He's also starting show a great interest in learning to crawl. Until now, he really hasn't been that interested in anything out of arms reach, but now he's quite motivated to try to move a couple feet. Because of the extensive flexibility in his hips, this requires a tremendous amount of strength in his legs, and core to compensate. But, because of the low muscle tone, his muscles don't really have the stamina to accommodate this new desire to move. He's working so hard now, and is having so much fun with it. In the last few days in particular, he's also become a lot more chatty, and is quite excited when Eric and I chat back in his language. There's a whole new fire in him, and he's now ready to start really exploring the world around him.
Neurodevelopment Assessment-
Two days before Christmas Ethan had an assessment done at the CDRC (Child Development and Rehab Center). This included testing from an Occupational Therapist, Physical Therapist, and Developmental Pediatrician (Dr. Peterson). The OT/PT tested Ethan's motor skills, and asked us a bunch of questions about how he moves, communicates, plays, eats... etc. Ethan tested with about a 40% delay in all areas. I asked Dr. Peterson if Ethan would be able to grow out of the delays, or if he would always be a little delayed. Dr. Peterson explained that it's not until a child is around 5 years old that you can get an idea for the extent of the delays. If Ethan is still testing around 40% delayed when he's 5, then he'll probably always be like that. For now, they're going to assess him every 4 months and track his development. They want to ensure that he doesn't fall further behind, and that when possible, he begins to bridge the gap from where he currently is to where he "should be". Dr. Peterson was also becoming a little concerned about Ethan's weight gain, or lack there of. He's actually lost about 1/2 a pound over the last few months. His weight is still normal, but his lack of growth is not normal. Because of all of the eating issues that Ethan has had, I had become a bit lazy in feeding him. Nursing is easy, and stress free for both of us, so I had been primarily nursing him. Dr. Peterson suggested that I give him at least 1 bottle of breast milk a day, and mix in 2 tsp. of dry formula. This way, Ethan would be getting more calories in the milk, without adding volume to the milk. Pumping enough milk to do this is a bit of a pain, so instead I decided to "mom up" and try to push through the feeding issues. Instead of worrying so much about what I thought Ethan should be eating, I catered to giving him food that I know he likes. It got him into a good rhythm and he's beginning to eat much better. He's still not at all interested in table food, but he's eating purees well, and I'm fine with that. This appointment really brought me a lot of peace. Until then, I had been judging myself as a mother based on Ethan's development. This helped me to really see that Ethan is developing at his own pace, and that his pace doesn't reflect my efforts. One of my biggest concerns about his slow development is fear that it was a sign of an underlying issue. For now, I've become at peace with not knowing. I've become to take each day as it comes, to encourage him to do what he can do, and not what I think he should be doing. I feel like all of his medical issues have really taken a lot of joy out of being his mom, and just enjoying him for who he is. This new found peace has really enabled me to really just enjoy playing with Ethan, and meeting him where he is.
Unfortunately, we left our camera at grandma's over Christmas, so we don't have any new pictures. Hopefully soon.
If you get a chance, please check out this blog about Scarlett. Brandi, Scarlett's mom, has an amazing attitude, and has done a great job of chronicling this excrutiating journey. http://brandiandchris.blogspot.com/2010_12_01_archive.html
Neurodevelopment Assessment-
Two days before Christmas Ethan had an assessment done at the CDRC (Child Development and Rehab Center). This included testing from an Occupational Therapist, Physical Therapist, and Developmental Pediatrician (Dr. Peterson). The OT/PT tested Ethan's motor skills, and asked us a bunch of questions about how he moves, communicates, plays, eats... etc. Ethan tested with about a 40% delay in all areas. I asked Dr. Peterson if Ethan would be able to grow out of the delays, or if he would always be a little delayed. Dr. Peterson explained that it's not until a child is around 5 years old that you can get an idea for the extent of the delays. If Ethan is still testing around 40% delayed when he's 5, then he'll probably always be like that. For now, they're going to assess him every 4 months and track his development. They want to ensure that he doesn't fall further behind, and that when possible, he begins to bridge the gap from where he currently is to where he "should be". Dr. Peterson was also becoming a little concerned about Ethan's weight gain, or lack there of. He's actually lost about 1/2 a pound over the last few months. His weight is still normal, but his lack of growth is not normal. Because of all of the eating issues that Ethan has had, I had become a bit lazy in feeding him. Nursing is easy, and stress free for both of us, so I had been primarily nursing him. Dr. Peterson suggested that I give him at least 1 bottle of breast milk a day, and mix in 2 tsp. of dry formula. This way, Ethan would be getting more calories in the milk, without adding volume to the milk. Pumping enough milk to do this is a bit of a pain, so instead I decided to "mom up" and try to push through the feeding issues. Instead of worrying so much about what I thought Ethan should be eating, I catered to giving him food that I know he likes. It got him into a good rhythm and he's beginning to eat much better. He's still not at all interested in table food, but he's eating purees well, and I'm fine with that. This appointment really brought me a lot of peace. Until then, I had been judging myself as a mother based on Ethan's development. This helped me to really see that Ethan is developing at his own pace, and that his pace doesn't reflect my efforts. One of my biggest concerns about his slow development is fear that it was a sign of an underlying issue. For now, I've become at peace with not knowing. I've become to take each day as it comes, to encourage him to do what he can do, and not what I think he should be doing. I feel like all of his medical issues have really taken a lot of joy out of being his mom, and just enjoying him for who he is. This new found peace has really enabled me to really just enjoy playing with Ethan, and meeting him where he is.
Unfortunately, we left our camera at grandma's over Christmas, so we don't have any new pictures. Hopefully soon.
If you get a chance, please check out this blog about Scarlett. Brandi, Scarlett's mom, has an amazing attitude, and has done a great job of chronicling this excrutiating journey. http://brandiandchris.blogspot.com/2010_12_01_archive.html
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