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

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.

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.

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.

Scooching!

 

 

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. :)

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.

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. :)

In the waiting room for the swallow study.

Prepping for the swallow study.

After the swallow study, we met Hannah, Jackson and their mommies at the mall.

Ethan is playing with his new friend Finley.

Ethan and Addison hanging out at the Library.

Brynlee is teaching Ethan how to hi-5.

Ethan and I celebrating my birthday.

We went to Red Robin for dinner on my birthday.

Mirrors are cool!