Tuesday, December 21, 2010

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.

Monday, December 13, 2010


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!


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.

Friday, December 3, 2010

Time Flies!

I can't believe it's been 3 weeks since I've updated my blog. It's been quite a busy eventful few weeks. Here's the skinny.

FIRST BIRTHDAY! Ethan's Grandpa John and his wife Lisa came in to visit Ethan for his birthday party. They got into Eugene from Arizona, Friday afternoon. We hung out, and started getting the house decorated for Ethan's party on Saturday, with a Curious George. All day Saturday I felt like I was on the verge of tears, just in disbelief that Ethan was already a year old. The party had great turn out, and it was wonderful to see so many of the people that have supported us over the past year. Since Ethan's grandparents from Virginia and California weren't able to make it to the party, we Skyped with them for the birthday cake. I am so thankful that skype allows my family to be able to participate in Ethan's life in a bigger way than would otherwise allow.

Therapy- Ethan has had 2 appointments with his Early Interventionist (EI). His EI is really happy to see that he's independently sitting up well, has increased his trunk control, and is rolling multiple times accross the floor. Now, we're working on getting Ethan to practice getting into a crawl position. It's pretty funny, because he naturally wants to lay like a frog, but the EI said that's bad for his hips, but Ethan seems to have no interest what so ever in getting up onto his hands and knees. Therapy sessions are really tiring for Ethan, he has to work really hard at it. Because of his low muscle tone, it takes him a lot more energy and effort just in doing basic things like rolling back and forth. He's doing great, and I'm really excited to see the progress he's making. I've really struggled with being patient with Ethan's development. My struggle is that I so desperately want to help him, but frequently feel lost, and unsure of how to help. Now, that he's set up with the EI, and we're learning how to better help him, I feel much more at ease, and am able to handle the slow pace with much less anxiety.

Pediatrician- Ethan saw his pediatrician a few days after his party for his 12 month well baby visit. He weighed in at 22lb. 4oz, and 29.5'' long. It's just amazing to think the little guy grew exactly 15lbs, and almost 10 inches in a year!!! It was really nice to be at the doctor's office for a "normal" visit. Despite all of the time Ethan has spent in and out of doctor's offices, he thankfully doesn't think any less of them. All in all the appointment went well. Dr. Pelinka put in a referral for Ethan to be assessed by the Neurodevelopmental Clinic through the CDRC (Child Development and Rehab Center). This is mostly for children with motor delays. The assessment will be a 4-5 hour appointment where they have several specialists and a developmental pediatrician assess him. I'm excited to hear what they have to say, and hope it will help us learn even more about his low muscle tone and how to best help him.

Feeding Clinic- A couple of days before Thanksgiving, Ethan had an appointment at the Feeding Clinic, which is another division of the CDRC. There was an Occupational Therapist who fed Ethan several different types of food, and helped him drink through a sippy cup. They noticed that he seems to enjoy eating crunchy foods. The OT suggested distracting him with foods like crackers, while he's crunching on a cracker, stick a piece of something like a green bean, in the back of his cheeks. I've tried this several times at home, and now he's onto me, he's not so fond of my finger coming at him anymore. They also noticed that when he eats/drinks he has a tendancy to be very "gurgly". They said this is indicitive of an anatomical issue with the pockets in the back of his throat. They're going to set up an appointment for him to have a live x-ray. Here, they will feed him food with dye in it, and watch him swallow it to see what his throat does. They said that the swallowing issues account for his pickiness and trouble with sippy cups. They sent us home with a special sippy cup, and thickeners, and suggested thickening the fluids that he drinks.The thicker consistency is easier for him to swallow. I've practiced the drinking a few times with him, but drinking through the cup is even messier than eating, so it ends up being quite a big production. As frustrating as the feeding has been his growth is not an issue, and I'm extremely thankful for that. My Mom and Step Dad were able to join us for the appointment. It's always much easier having an extra set of ears at these appointments, there's so much going on that I have trouble catching everything.

Thanksgiving Week- It's crazy to think that Ethan is no longer celebrating firsts. Grandma Cindy and Grandpa Bob came up for the week from California. They got here Monday evening. It was just in time because Monday night it snowed! Ethan got to "play" in the snow.  He liked to try and eat it, but really wasn't too sure about it. While Grandma and Grandpa were here, we played lots of cards, watched loads of football, played with the baby, and all in all had a great time. Friday morning Daddy stayed home with Ethan while Grandma, Grandpa and I did some Christmas shopping. On Saturday, we bid a sad farewell to Grandma and Grandpa. Ethan got to go to a Birthday party for his friend Henry. There were lots of babies there to celebrate Henry, it's always fun watching babies play. Ethan's not quite into playing yet, he'll be there soon enough.

 Believe it or not, that's the short version of the last 3 weeks. I really enjoy blogging, it feels very theraputic. Hopefully I'll remember to do it more often so that they're not quite so long. *Muah!*