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!

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

A normal week!

This is how Ethan "works" during therapy. He really loves Debrah.

Ethan's telling Hannah (left) and Sophia (right) quite a story.

Ethan playing with Hannah and Sophia

Ethan hanging out with his friend Jackson at the library.

Ethan loves hanging out with Daddy.

He had a great time at Daddy's work party.

I thought I'd share with you what a normal week looks like.

On Tuesday, Ethan had therapy. During therapy Debrah an Early Interventionist comes to our home, and teaches us how we can help Ethan. When Debrah first started visiting us, she focused heavily on helping Ethan gain trunk control. We did this primarily by doing exercises on a yoga ball. By having Ethan sit on the yoga ball, she could tilt him side to side, and front to back. This causes Ethan to work at correcting himself, and gives him a great ab work out. These exercises seemed to help Ethan tremendously in sitting up. Ethan also learned out to reach for things while on his yoga ball. While sitting on the floor, he never had any interest in reaching for toys. By placing him on the yoga ball, it allowed him to have a little extra movement without having to work so hard. This has given him a whole new interest in playing with toys. I never understood why it seemed like he had so little interest in "playing". Debrah explained to me that for a baby with low muscle tone, it takes a tremendous amount of effort to do something as basic as sitting up. He had to focus so much on that, he didn't really have much energy left to think about actually playing. Now that he's sitting up so well, he's become much more interested in toys. Now, our main focus is teaching Ethan how to get from sitting up, down onto his hands and knees. He's getting a lot better, but still has a very difficult time with it. His legs end up in a frog position, which is something we're trying hard to prevent. Something else that I've been really excited about is standing. Ethan has recently gotten interested in standing. It's been a lot of fun watching him gain these new skills, he's quite proud of himself, but I don't think nearly as proud as Mom and Dad are. We also work on babbling and really trying to encourage new sounds. Therapy is really hard work for Ethan, and he's usually down for a nap within a few minutes of Debrah leaving.

On Wednesday, we visited Sophia's house along with our friend Hannah. Sophia and Hannah are both great walkers, and it's a lot of fun watching them explore. Sophia was getting ready to go on a trip to Honduras with her family the next day. A small part of me can't help but to be sad watching other babies developing "normally". I know that Ethan will catch up eventually, but I think the thing that's troubling for me, is that there are still a lot of unknowns about his medical condition and development. Regardless, he is making progress and with each milestone, I couldn't possibly be more proud of him.

On Friday, we went to story time at the library. This is a really fun program where they encourage reading and singing with your baby. There are lots of fun songs that include sign language, animal noises, and lots of movement. In the past Ethan has REALLY enjoyed the library. This time he was a bit fussy, but got quite excited at the end when they started passing out shakers. They have home-made shakers that are made from plastic Easter eggs filled with rice and other various things. He really enjoys the shakers. Friday evening was Pipeworks (my husbands company) Christmas party. We didn't stay for too long, but Ethan had a great time hanging out. Eric really loves showing off Ethan, and Ethan seems to always know just the right time to ham it up.

Drama!

Ethan's medical history has definitely been a tad dramatic. This past week was no different. He had surgery scheduled for this past Monday to correct an undescended testicle. Because of his metabolic condition, it makes things a little more complex. His metabolic specialist (Dr. Harding) had a few guidelines for Ethan regarding anesthesia. Well, I found out less than a week before the surgery, that these guidelines had not made it to the Urology Department. Of course, this made me a bit concerned. Thankfully, after a few phone calls it sounded like all of the information was where it needed to be, and everyone involved was on the same page.

Monday- We arrived at the Surgery Center in Springfield at 6:30am. Ethan was in a great mood. After a short wait, we were called back and started the pre-op routine. We met with the nurse, the anesthesiologist, and the urologist. Everyone was extremely nice, and immediately fell in love with Ethan, who was being quite flirty. After they went over the entire procedure and we signed a bunch of paperwork, Ethan was starting to get a little fussy. He was ready for breakfast, and did not appreciate being denied. They wanted to give him some medicine to help "relax" him. The medicine consisted of a syringe filled with apple juice, splenda, and special drugs. I politely explained that Ethan doesn't take oral meds. They politely replied, please try anyway. They quickly saw what I meant, and realized that I was serious. Luckily it wasn't a drug that he needed, so they weren't to concerned about how much he got. Within 5-10 minutes, it was quite apparent that despite his best efforts to expel every last drop, he must have absorbed some of the drug. It was quite comical to see the poor kid look so "drunk". Right at 7:30am, they were ready for him in the OR. As the anesthesiologist began to place the mask, she asked me what songs Ethan likes. I said one of his favorites is The Wheels on the Bus! Within seconds, she and the 2 nurses were singing Ethan off to sleep. It really helped put me at ease to know I was leaving him with such a caring, nurturing group. I joined Eric in the waiting room, for what seemed like forever. About 9:15, Dr. Mehlhaff greeted us and said that everything went perfect, and that Ethan had actually had an ectopic testicle, not an undescended testicle. All this means is that en-route to it's proper home, it got lost, and stuck in an abnormal place. Ethan took a bit longer than expected to wake up from the procedure, but we finally got to see him shortly after 10. He was a bit groggy, but in a great mood. We got to go home shortly after. It was such a HUGE relief to have this operation behind us. I had been dreading it for so long. As routine as this surgery is, Ethan is by no means a routine baby, and the rest of our day seemed to prove that even more.

Through out the day Ethan had been a bit fussy, a bit sleepy, and had his temperature was a tad elevated. Considering everything he had been through, none of this was a surprise. He woke up from a nap around 6pm, and I noticed his temp at that point was 100.8. Our post-op papers had said we should call the on-call doctor if his temp got over 101. I decided to go ahead and call in. They said that this was fairly normal response to having surgery, and that we should give him some Tylenol, and let them know if he got any worse. As I was getting the Tylenol ready, he had a seizure. The seizure lasted over 3 minutes, and was followed by some pretty traumatic screaming. As soon as the seizure started, we called 911. This isn't something that is usually necessary for a seizure, but at the time, it was the only thing I could think of. Having to watch Ethan go through this is extremely hard, and not something I could wish on my worst enemy. Since Ethan was so out of it after the seizure, the EMT's suggested he go via ambulance to the ER. Once we were there, they were able to administer some Tylenol in a suppository, and they attempted and royally failed at giving him some Motrin orally. The ER doctor was the same doctor that saw Ethan back in September. He remembered us, and quickly got himself updated on Ethan's new information. Ethan has a special letter from Dr. Harding (the metabolic specialist) that gives instructions on blood tests to run, and special IV fluids to give in any emergency. It was a bit comical for Eric and I to watch as each person on the firetruck, ambulance, and in the ER read the letter multiple times, and then just look at us, and ask us what it all means. The ER doctor decided to admit Ethan into the hospital for the night. In the mean time, we got a call from Ethan's pediatrician. She was off duty, and at home, but had heard what was going on, and called to make sure we were OK. She also had called the on call pediatrician, and gave her all of the pertinent information regarding Ethan's medical history. Ethan's pediatrician, Dr. Pelinka

Thursday- We had an appointment with Dr. Pelinka as a follow up to the hospital stay. After discussing the incident, Dr. Pelinka decided to have Ethan evaluated by Dr. Gowens, a pediatric neurologist. Ethan's seizures are considered febrile seizures (caused by fever) however, they seem to happen at a much lower temperature than usual, and are longer and more intense than typical febrile seizures. She wants Dr. Gowens to make sure that there's not another root for these seizures. Hopefully they are just febrile seizures, and assuming that's the case, he should grow out of them.

Last week was quite a dramatic one, and one that I'm very grateful to have behind us.

On a better note, Ethan is starting to really enjoy standing. This is something he's struggled with for a long time, and it's really nice to see him making good progress. His milestones are slow, but they are coming, and with each one I feel like little kid on Christmas morning, I'm just so excited for him. He's also trying to pull himself up into a standing position. He's really become interested in his new found abilities, and I'm really excited to see what the next few weeks have in store for him.

6am- getting ready to head to the Surgery Center.

Hanging out with Daddy in the waiting room.

"I has a cup."

I'm so thankful he hasn't grown an aversion to Dr.'s offices yet!

Cheese!

Ready to go.

This was after his "special" medicine.

All done!

Is it nap time yet?

In the ER. :(

Second IV for the day.

We had a chauffeur from the ER to the hospital room.

Daddy's much more comfy than the hospital bed.