Ten on Tuesday

What's new with Lucas?

1. I've been home on medical leave for a week now until the baby comes. We're trying to avoid another premature birth, and I'm really glad that my doctor had enough insight to suggest that I stay home. I might be blogging a little bit more now too. :)

2. Lucas is so excited for his baby sister. I hope it continues. When I asked him the other night how he's going to help, he replied, "I'm going to change her diaper, help put her to bed, read her stories, and she's going to sleep over at Oma's house." Priceless.

3. In preparation for the big birth-day, Lucas has been spending the night at my parents' house once a week. It is the highlight of his week. I always ask ahead of time, and then make him call and ask too. I LOVE seeing him talk on the phone. It always amazes me, and I believe it always will.

4. I love Fall! I used to think Spring was my favorite time of year, but it's definitely Fall. I love the cooler weather (with a passion), and I love watching the leaves change colors. It's also the season of fairs, and pumpkin patches, and new vocabulary topics. I enjoy living in a part of the country that sees all 4 seasons.

5. Speaking of weather... this weather makes me want to spend time outside, as opposed to inside like during our humid summer. Lucas plays so nicely with our older neighborhood children, and we can just sit in the driveway, and watch him play from a distance. I'm so happy to live in our new house, and to be part of a nice little community. We've been in our house a little over a year now.

6. Last week was our town's annual farm show. Lucas has been looking forward to it all year. We told him that as soon as the leaves started to turn colors that it would be time for the farm show. Lo and behold... the leaves started to change and it was farm show time! He got to see cows, pigs, sheep, goats, alpacas, bunnies, and a few other animals. We went every day. Here's a picture from the festivities:

7. I've been enjoying my (rest) time at home, but I'm also taking advantage of celebrating autumn with little Lucas. We decorated the house, and last week we made "Halloween" cupcakes to share with his neighborhood friends. He was so proud of these!

8. Our little fish is taking learn-to-swim lessons at a local retirement community. We're going to continue through the winter. I'm so incredibly thankful for the ability to waterproof his CI, as lessons would not go as smoothly without him being able to hear. During the first class, I decided not even to mention to his instructor that he's deaf. I wanted to see how he would do. Other than the swimming cap (which is a little strange for a 3-year-old, but not too out of the ordinary), his CI was not visible, so no one knew his little "secret". Admittedly, it was kind of nice to not have immediate looks or questions. He did pretty well, but it was apparent that he would need some minor accommodations so it doesn't appear that he's just ignoring his instructor! The indoor pool area echoes excessively, and she really needs to be within close proximity to him (and his microphone for that matter) for him to hear her well. She was surprised when I told her, and very happy to accommodate.

9. One month ago, we welcomed the newest addition to our extended family, my niece Audrey! She is Ryan's little sister, and was born healthy and full-term. Lucas and Ryan are a month apart, and now Audrey and our baby girl will be about a month or so apart too. And no, we didn't plan it that way, but we're so excited about it! Our boys are great buddies, and we hope that the girls will grow up to be great friends also.

10. I'm 36 weeks pregnant today, and it's quite a milestone to have reached! I'm now a few days past the point when I delivered Lucas. Every day we are one step closer to bringing home a healthy baby girl! Here's a photo of me with Lucas a little over a week ago. Let the FINAL COUNTDOWN begin!

language sample - 3 year 9 months

Here's a spontaneous language sample from a few weeks ago. I wanted to record him talking about going to the beach, as that seems to be his highlight from this summer. Enjoy!

naïve

A better name for this post would be not-so-naïve.

When I was pregnant with Lucas, I remember quite vividly having my first ultrasound at 20 weeks. I knew that at that time, we would be able to see if our baby was "structurally sound," if you will, in addition to possibly finding out the gender. We had no gender success (for another few ultrasounds), but we learned that day that Lucas had 10 fingers and 10 toes, and I felt so relieved. SO RELIEVED! As if 10 fingers and 10 toes could predict the health of my baby. 

Flash forward to his premature birth, a result of a premature rupture of membranes at 35 weeks (my water broke), followed by an 8-day NICU stay (I was discharged without him on Christmas Day!), 3 failed newborn hearing screenings, a detected heart murmur, and another birth defect. We left the NICU with a neonatologist (who should NOT work with NICU families) telling us that Lucas was going to die because of his heart defect... never mind his hearing. To say that the first few weeks of his life were difficult is a VAST understatement. I woke him every 3 hours for the first month of his life to feed him. And, I didn't put him down for about 2 months. Really. We even slept together on the couch. Add to it the fact that I spent 10 hours a day trying to (unsuccessfully) breastfeed him for the first 3 months until he was hospitalized with RSV for 5 days, at which point I decided to pump full time for the next 10 months. He was then hospitalized again for 5 days at 6 months old with suspected meningitis. Those first few months are seriously a blur. He had 2 sedated MRIs, a CT scan and 2 surgeries by the time he turned 1. I never once had a carefree day with him. Never even once. There's a CD I used to listen to during that time to try and relax. When I hear it now, it makes me absolutely sick.

I'm not looking for pity at all, but that was my reality. I now know that it really could have been much worse. We have so many blessings to count. But it still wasn't easy, and you'll never understand until you have a similar experience. Lucas is the center of my world. His joy brings me happiness every.single.day. His lust for life clouds over the intense sorrow and worry I had for him as a newborn. His success is because of a fighting spirit on both his part and ours. We now only look with lots and lots of hope toward the future. We are at a great point in life with Lucas, and we hardly think about that first, difficult year.

However, with the imminent arrival of our baby girl, Lucas's birth and infancy are all that's on my mind. It's the only thing I know. And this time around, I'm not so naïve. 

I know the devastating effects of premature birth. I know the heartbreak of a NICU stay. I know the struggle of unsuccessful breastfeeding. I know the stress of several difficult diagnoses paired with numerous specialist appointments 90 miles away. I know the anxiety of not one, but 6 surgeries for my child, in addition to several painful tests. 

But, I also know how to try and prevent premature birth with closely-followed prenatal care. I know that my baby will probably come home after a NICU stay (at least at this point in my pregnancy). I know that I can still pump breast milk and give my baby the nutrition she deserves. I know how to prepare and pack an infant for a long day of specialist visits. I know how to prepare a child (and myself) for surgery and tests. I know where to look for and find invaluable parent support! AND I know how to teach a baby to listen and speak.

We know that it's certainly possible that our little girl may have a hearing loss. I know families with 1 of 4 children with EVA, and I know families with 4 out of 4 children with EVA. It is absolutely not out of the realm of possibilities. It will still be devastating, and we will mourn for a time, but we will be prepared. And we know what a bright future she will have. She has an AMAZING big brother to look up to. At this point, it is the least of my worries. And, if she CAN hear, she might just be the amazing 6-month old talking baby (haha), because auditory-verbal therapy is an integral part of our parenting lifestyle.

This one has got to be easier though, right? Here's praying for an easy next 2 weeks (to full-term), a smooth delivery, and most of all... a HEALTHY baby girl who gets to go home when her mommy is discharged. Bring it on.

1st day of preschool

I've been quite neglectful of the blog this summer. I'm actually a little sad about it, but I can say with certainty that we had an AMAZING summer with our little man, and blogging just didn't fit into the picture very often.

Being pregnant this summer and chasing after an energetic 3 year old with a busy schedule kept me very tired. Most nights I would put him to bed and go straight to bed myself. I don't like to give "no time" as an excuse, because I believe you make time for what you want to make time for, so instead I will chalk it up to "no energy."

We spent lots of time in the pool. This kid is a fish. Seriously. We often dressed him like this, although he lost the tube pretty quickly because he's so great in the water! The one-piece outfit is SPF 50, so that we wouldn't have to put suntan lotion on every inch of his body.

Check out this daredevil:

Lucas spent time at camp, we went on many day trips, spent some time at the beach, and just enjoyed having mommy around full time. We didn't get through the whole alphabet, but did quite a few letters.

Lucas had his first day of preschool today. He attends a mainstream preschool, at the same location as last year. He will attend 3 days a week for 2.5 hours this year with nine other typical hearing peers. Much to my dismay, I was unable to go with him to his first day, but Oma took him and reported that he enjoyed himself and was happy to see friends from last year. One of the mothers inquired about his ears, and wondered how well he could speak. Apparently she was pretty impressed when she heard him. (*insert proud mommy grin here*)

Lucas continues to receive services at Schreiber Pediatric Rehab Center, one of my favorite places. He gets speech therapy once weekly and physical therapy biweekly. He still struggles a bit with his gross motor skills, although he's progressing well. He also gets weekly services from a great Teacher of the Deaf at home. I believe he is thriving with his current services. He had some formal testing done at CHOP this summer when he was 3 years 6 months, and he was testing in the 4 year 2 month to 4 year 8 month range in a variety of receptive/expressive/skill categories normed against typical hearing peers. GO Lucas!

I'm on the final countdown... 7 weeks or fewer to go in this pregnancy! It has not been a particularly easy pregnancy, and I've been watched closely because of Lucas's premature birth and myriad of health issues. I've had 16 (weekly) shots of 17P (progesterone) so far to prevent pre-term labor, and I only have 4 to go! This week I start weekly non-stress tests. I will be glad when she's here. She has a name, but it is a secret. Not even Oma knows. Of course, I have my worries, but I can tell you that hearing loss is at the bottom of that list. We know that it's certainly not out of the realm of possibilities. But, that's another post altogether... hopefully soon. 

Wordless Wednesday

brought to you by the letter "s"

Today I bring to you the first installation of our ABCs of summer. Basically, I'm going to pick a letter of the day to concentrate on, and try to find as many things to do for the day that start with that letter. We are also going to practice writing that letter, and talk about its sound all day. I'm hoping that this will give our days a little bit more focus, while working on pre-literacy skills and vocabulary expansion with Lucas!

Today's letter was S. We practiced writing it in one of these cool workbooks that I got on Amazon a few weeks ago on sale...

We ate an egg & cheese Sandwich for breakfast...

Then we went to the park to play in the Sand...

Swing like a monkey...

go down the *gasp* plastic Slide...

and we finished off the first half of the day in Oma's Swimming pool...

It was easy, fun, (free), and focused. It gave us something to talk about all day long. I was happy when Nate came home from his grad class and Lucas told him about the letter of the day unprompted! I'm looking forward to the rest of our ABC days... in no particular order, of course.

Thankful on Thursday

Things for which I'm thankful this Thursday...

1. A great cardiology appointment. We were in and out of there in about 45 minutes, including an EKG, a heart echo and two visits with his cardiologist. Lucas was cooperative, although a bit apprehensive of all the tests. We also got a preliminary results reading of status quo. His heart condition is no better, but it also does not appear worse! We'll take it. You can read a little more about Lucas's heart here.

2. Our new home and new neighbors. We enjoyed spending time with our neighbors at "hot dog Thursday" tonight, while Lucas played with the neighborhood kids. I love that our neighborhood gets along so well that we have a get together once a week!

3. Waterproofing CI efforts. Lucas is a different kid in the water when he can listen and we can reason with  him. We are limited to our 50 or so survival signs, which don't include ultimatums, reasoning, and bribery. It's so much more effective when he can hear us!

4. Summer break. My stress level has decreased significantly, as has my blood pressure! I am thoroughly enjoying being home full-time with little-boy-blue. He's enjoying his "mommy days" too!

5. The public library. Lucas has a love of books, and is highly motivated by new books. We have been having a blast visiting the library to check out books and DVDs every week. The summer is still young too...

6. A boy that never stops talking. He talks to himself, he talks to his stuffed animals & he talks to me constantly. It never.gets.old. I will never.take.it.for.granted. I often ponder the idea that he was truly born to talk. Without his CIs, that never would have been a reality for him. It's so sad for me to think about.

7. Light-blocking blinds in Lucas's bedroom. With these blinds, he doesn't mind going to bed before it's dark, and he would also sleep until 9 AM some mornings, if I would let him. He's rather sensitive to light, I believe in part due to a heightening of his 4 other senses, because of his loss of hearing. It's just a mama theory though.

8. 2-sided wig tape. When we saw Lucas in recovery after his most recent surgery, the nurse informed us that Lucas would have to wear his left (new) ear only, because of the incision. I laughed out loud. We could try that, I thought to myself, if she wanted to see a very agitated preschooler yelling, "I need my ear," while groggily awakening from anesthesia. Instead, I popped off the ear hook and stuck it to his head with the ear tape that I keep in all of my bags. Beautiful solution. She even thought so.

9. Children's Hospital of Philadelphia. I wouldn't imagine taking Lucas anywhere else right now for all of his specialty care. We feel very blessed to live within (pretty) easy driving distance to their facilities. Lucas sees some of the best doctors in the nation, and I feel very comfortable with him in their care.

10. Family. I'm so thankful for the very special relationships that Lucas has with both sets of grandparents and his aunts and cousins. They also help us out tremendously. I'm so glad that we live so close to everyone.

For what are you thankful this Thursday?