New Bike!

It's not an actual two-wheeler, it's called a Strider or balance bike. It doesn't have training wheels, but it doesn't have pedals either. It's a teeny-tiny bike that Pope uses his feet to propel forward. As he gets the hang of it and learns to balance, he can lift his feet and coast a bit. It's something fun, but is also a great therapy tool as Pope needs to work on building more core muscle strength to combat his hypotonia. It's going to take some practice, but he'll get the hang of it! :)

All I want for Christmas...

We had a great time playing around at Sam Ash today while Mike looked for a new synthesizer... Pope found an electronic piano and he fell in love... the cost: $3500! Good luck, Pope!

A new way of looking at things

With all of the amazing progress that Pope has made in the last 9 months, it's easy to forget that Pope is, and always will be, a blind child. It's been easy to put his blindness on the back burner. For starters, Pope couldn't see anything at all when we brought him home in March. But thanks to the very skilled hands of Dr. Alex Levin at Wills Eye Hospital, Pope's vision was restored in one eye this past June. The important thing to remember is that his new vision isn't 20/20, it's more like 20/400 with his glasses. Without them, his vision is nothing more than light, color and motion. He can't see any details. Recently, Pope's TVI gave me the opportunity to try on goggles that simulated the way Pope sees the world. The right goggle was completely blacked out, since Pope does not have a right eye, the left goggle simulated 20/400 vision, probably what Pope might see on a good day, with his very thick glasses. The photos below demonstrate a scene with 20/20 vision and the same scene with 20/400 vision.

As you can imagine, the simulation experience was very eye opening (no pun intended!) It really helped me better understand why Pope does some of the things he does, like bringing objects and books very close to his eye.

Pope has learned the classroom and the house so well, that it's easy to forget that he really, really needs a cane when he's in an unfamiliar place. There have been many times, over the past several months, that Pope has fallen or run into something. Pope also has no depth perception and he can see nothing to the right of him, so we must constantly be looking out for that too.


It's been easy to overlook Pope's blindness because we've put so much into his other developmental delays. His speech is so far behind. He's social skills are way behind as well. But as he begins to talk and become more social, we need to face the fact that his vision will not change. It will never get any better than it is today. And Pope will have to learn to cope... we all will.

Speech!

I didn't want to leave the house this morning. I didn't want to leave Pope. From the moment he woke up, he was so ENGAGED! He said "Good morning" and "Hi Ernie" (to his Ernie doll, of course). As I got him dressed I said "We love Ernie..." and he repeated it. As he was going down the stairs his carried Ernie and said "Ernie at my school" (he has a small Ernie doll at school that the teacher uses for positive reinforcement), then he stopped at the Christmas tree and said "lights". I coaxed him away from the tree for breakfast in the kitchen. He looked at the table already prepared with scrambled eggs and said "Yeah! Eat!... Yah, eggs!" When Mike came in I said "Hi Daddy." and Pope repeated it. I hated leaving for work this morning. I really wanted to see and hear what else Pope had to say!

World's cutest...

The Pope is such a cute kid... and the Princess is the best big sister ever! Am I biased? You bet!

Merry Christmas! And a Holiday photo!

During a year that's been fraught with twists and turns... I am happy to report my pleasure with this year's Christmas photo... I only hope such luck in the future...

The Hospital

Pope's been in the hospital. He's been sick a lot lately and the doctors have just decided it's time to stop messing around with all of these illnesses. He was a trooper though, as charming as ever during his stay.

The princess also had an appointment at the same hospital. Her appointments went well. She will have her pre-op on December 23, then surgery on December 29th. She'll have a night in the hospital and if all goes well, she'll go home the next day.

Post placement reports

I am tired of pleasing China. I'll admit it. I'm done. We just finished a post placement report... report #2. I know what you're thinking... You don't need a post placement report at 9 months! No one does! And you're right. Except for the fact that due to the severity of Pope's many medical and cognitive conditions, we didn't have our 6 week post placement until about 5 months after our adoption. And we still owed the 6 month and 12 month. So in order to have the 12 month on time (in late February or early March) we needed to do our 6 month post placement now.

I'll be quite honest, China changed their post placement requirements literally days after we adopted Pope. You are now required to file post placement at 6 weeks, 6 months, 12 months, then every year until year 5 post placement! I personally think it is ridiculous (we just made the cut-off, so our 12 month post placement will be our last report).

I don't see the point. I doubt anyone in China reads the report or even looks at the mandatory 6 photos you need to submit with the report. (Many of them came straight off this blog.) And if they did read the report, which by my adoption agencies comments is glowing, what would they do with the information? What would they do if the post placement said that things were not working out and both the family and child are unhappy? What would China do? That's easy... nothing.

Lord, can we catch a break?

I was so looking forward to Thanksgiving week! I had planned to work from home on Monday and take the rest of the week off... sort of a mini-vacation. No plans, just rest and great Thanksgiving meal at our house this year.

No. Such. Luck.

My business had a small crisis. This sparked a flurry of meetings that are scheduled Monday and a 5 hour group working session on Tuesday. No problem! I will still take Wednesday off... Five uninterrupted days...

Wrong. Again.

Pope's doctor called. She ordered some additional blood work and a MRI. The MRI coordinator called me with a slew of questions. "Does he have trouble laying still for 45 minutes to an hour?" Huh? He's three... That aside, the MRI, under anesthesia, is scheduled at the children's hospital for Wednesday. Okay. No problem. I'll take a 4 day weekend.

Nope. Not. A. Chance.

The princess had 4 nosebleeds yesterday. 2 biggies and 2 smaller "aftershocks" but 4 nosebleeds is just too many. It's becoming more of a social problem for our 7 year old. Mike insisted on calling our ENT. He begged and pleaded that we would be at the children's hospital next Wednesday and could we please try to schedule a visit with her ENT that same day. Unfortunately, no, but the ENT had an available appointment on Friday. So, we'll be at the hospital, with each kid, on Wednesday and Friday. It's likely we'll be scheduling a surgery for the princess. We've put it off too long. Can we please just catch a break?

2011-2012 School Portraits

I am plesantly surprized at the way the school portraits turned out this year!

Slow progress

It's hard to believe we've been home with the Pope for almost 9 months now. We're doing okay. Much better than when were facing cancer in March and additional eye surgeries during the summer. I would never want to go back there again. And although Pope lost one eye to cancer, he gained a lot of vision in the other eye, thanks to the very talented Dr. Alex Levin at Wills Eye Hospital.

Pope's progress has been slow, but he is making progress. He is no where as developmentally advanced as we hoped and thought he would be by now. His delays are significant, and as he approaches his 4th birthday, those delays become more and more apparent.

Pope is growing, but not gaining weight. He started out at below the 3rd percentile for height and weight in March. He is now at the 10th percentile for height, but still well below the 3rd percentile for weight. He has not gained any weight, not one single pound since he arrived in March. Our pediatrician isn't too worried. She suggested trying Pediasure, which he refuses to drink. We've got him on a calorie rich diet and are using cream and butter in place of lowfat milk and margarine. He also gets a couple tablespoons of peanut butter at almost every meal. Hoping that will help him gain a little weight.

His total communication skills are better. He will gesture and take our hand to show us what he wants, but he's still not talking. He's trying; we think he "wants" to speak. He's got a handful of words and, if you're familiar with his language, you can understand most of what he is saying. He loves to sing and hum and he can mimic, musically, just about anything you play for him.

His social skills are WAY behind. He's attending preschool at our regular public school in the preschool disabled class. Unfortunately, there is only one other child in the 3-year-old classroom, so it doesn't make for a good environment for socialization. We do love that he's getting physical therapy, occupational therapy and speech therapy several times a week, but he really needs social interaction time as well.

Pope has a new developmental pediatrician at AI DuPont Hospital for Children. Her name is Dr. Jones and we simply adore her! She's very interested in doing what is best for Pope. Next Wednesday, Pope is scheduled for a MRI under anesthesia. I like to limit Pope's exposure to anesthesia as much as possible. I asked his ophthalmologist and oncologist at Wills if it would be possible to do the MRI at the same time as his next EUA (examination under anesthesia) and the answer was "no", due to a MRI machine being a giant magnet and the special equipment the doctors need for his exam. So we scheduled it for next week. That way we can get the MRI done before the end of the year. God knows we've met our deductible many times over!

So, we're forging ahead, trying to better help change the things we can, trying to accept the things we can't. Always learning the difference between the two.

An evening out

We had dinner with some great friends last night to celebrate Mike's birthday. We hadn't planned on taking the kids with us, but I am so glad we did! Pope had a great time, as you can see... hey, the boy loves a party!

Halloween at Sesame Place!

Thanks to the Variety Club, the Princess and the Pope were afforded the opportunity to go to Sesame Place for the Count's Halloween Spook-tacular! I can tell you, without the Variety Club, a trip to Sesame Place would not be possible (regular admission is $55.99, ages 2 and up!) My gang had an amazing time! Even Pope was well behaved, went on some rides and got to meet Ernie! I've never him so enthusiastic about anything!

School Halloween Party

Pope's school had their Halloween party last night. I wasn't sure how it was going to work out for him to be with all of the kids (his school is Pre-K through 5th grade) in the school gym, but I guess having his big sister there gave him some added confidence because he did pretty well!


Pope's dragon costume won the pre-k "scariest" costume catagory! (The PTA gave the winners a tiny plastic trophy and a marshmallow ghost. It was so cute!)

Pope in the gym with some of his pre-k classmates. The music in the gym was really loud.

My princess and my dragon. Such an adorable pair!

Fish Oil

I read somewhere that fish oil supplements can help kids with speech delays. I figured it was worth a try, so I've been giving JP 1000mg of fish oil in the morning with his breakfast. I don't want him to choke on the huge pill, so I prick it with a pin and squeeze the contents into a spoon. It must not taste too bad because he gulps it down with ease although it is a little smelly!

It seems to be working. He's been on the oil for the last 3 weeks or so and we've noticed a marked improvement in his speech! His words are becoming clearer, although not perfect, definitely better. He is also beginning to string words together. A couple days ago he said "I want that!" and yesterday he said "Whoa horsey!"

I also noticed that he has already met most of the goals in his IEP... his goals for the YEAR. I'd say he's completed 75-80% of what's written and it's only the end of October. So we'll have to schedule another IEP meeting for January. I want to keep him challenge.

Prize-winning pie!

I really don't bake much. In fact, normally if it can't be cooked on the grill or in the microwave, I don't cook it. Seriously... I purchase pre-made mashed potatoes.

But, my work group decided to have a baking contest and subsequent bake sale as a fundraiser this year, so I thought, why not? I called my mom to get her world famous pumpkin pie recipe. It's actually a pretty easy recipe and I made 2 pies. One pie actually made it in to work today. The really amazing part of the story? They judged on appearance, taste and creativity. I won... first prize, against about 40 other traditional and nontraditional desserts of all shapes and sizes. I'm sure the extra bits of crust on the top sealed the deal, at least for creativity! Yep, I'm pretty darn proud of this pie. And the Princess will be too... she helped make it. And my mom as well... her phenomenal recipe.

Halloween Pre-Boo!

The Princess and her Dragon!

BAM

October is Blindness Awareness Month. To kick off this year's awareness month, we all decided to do a "Walk for BAM". It was a really fun day. The Princess came in 3rd place in the 2 mile event! She ran the entire race! We were so amazed! Great job Princess! The Pope enjoyed the 2 mile ride in a stroller. A lot of the course was bumpy trails through the woods... right up Pope's ally!

Kind of sobering... isn't it?

Sister and Brother

It really is nice that the Princess and the Pope get along so well. These moments do my heart good!

Hypotonia

Hypotonia is a state of low muscle tone (the amount of tension or resistance to movement in a muscle), often involving reduced muscle strength.

Pope was diagnosed as having hypotonia.

By this photo, you'd never know...

FIRST lost tooth!

After 7 years, 4 weeks and 5 days... the FIRST tooth is out! Congratulations Princess!

A letter.

Remember that he is, first of all, my child.
Let me see him smiling in his sleep and let me think about how handsome he is...
and not about how delayed that smile was in coming.
Help me not lose sight of my son in the shadow of his limitations...
I know that you care for my child and that you work hard with him.
I need your expertise to help him become all that he is capable of being.
You need my help in understanding who he really is and in following through at home with things that are important.
Remember, though, that you send him home at night and have weekends off and paid vacations.
Let me have the luxury of having a vacation, sometimes physically,
sometimes just emotionally, for a day, a week, a month, without your judging me.
I will be there for him when you are long gone.
I love my child with an intensity that you can only imagine.
If on a given day I am tired or cross with him, listen to me, lighten my burden, but do not judge me.
Celebrate with me, rejoice in who he is and who he will become...
but forgive me if from time to time I shed a tear for who he might have been.

Welcome Autumn

Autumn weather is here. Cane training is going well... so much more confidence!

Camille's Art

A child who loves God, Jesus and Catholicism. God bless you, Princess... and know the Lord loves you more!

First Day of School!

It was a rainy start to the school year, but Pope started preschool and the Princess started 2nd grade today!

Pope has less tolerance for photos. What a sourpuss!

Cane travel

Cane travel exercises are NOT Pope's favorite activity. Most places we go without the cane. But when your vision is as low as Pope's vision, the cane is a terrific and very useful tool. We decided, since Pope was already 3 years old when we adopted him, that he should begin using the cane right away. However, this has taken a lot of work on our part, since we still don't have an O&M instructor for Pope. Mike taught me how to use a cane and I'm teaching Pope, or at least trying to teach Pope.

This is Pope in March, getting the feel of the cane for the first time.

It seems the best places to work with Pope is outside. Here's Pope using his cane at the carwash in July.

Here's Pope today. He's really getting the "sweep" technique down. But he grouched about it the entire time!

Kennedy Krieger

Next week, Pope and I are traveling to Baltimore to the Kennedy Krieger Institute at Johns Hopkins. We'll see a team of specialists so we can determine what, if anything, can help Pope with his development. He's made progress over the past 6 months, but not as much as we'd like to see. I am suspicious that Pope has Autism. I only hope and pray that it's Institutional Autism and, with time and therapy, he will recover.

We're also having Pope's hearing tested. We were not successful having a hearing test when he saw the ENT a couple of months ago, so we're hoping the audiologist will have better luck since KKI is an expect facility at handling kids like Pope with significant developmental delays. I don't think Pope has a hearing problem as he is starting to speak and now comes to us when we call his name with much more consistency than he did a few months ago.

Pope also starts preschool next week. Sadly, he'll miss a few days while we're at KKI. But he is going to the first day of school... a major milestone and certainly a photo op! The Princess also starts school next week... second grade; hard to believe and it makes me wonder where the time has gone! Be on the lookout for "first day" pictures next week!

Talks with God

God talks to me in a variety of ways. Our conversations are never, ever the literal kind like "Hello God, how have you been?" to which He answers, "Well hi there, Faye! I'm well and you? Of course, you don't really need to answer, I know how you are! Haha!"

Most of the time we talk through prayer. I pray and He listens. Sometimes I talk to Him out loud, sometimes I talk to His Son, sometimes to the saints. Somes I sit in quite meditation, but I know He is always listening. It gets the job done. Sometime I go to Eucharist adoration and spend some time in-person with Jesus. During those times, I don't have to say anything at all. I just feel the warmth of His love.

But I find it always especially exciting when He talks to me! Sometimes I catch him whisper something to me through a soft breeze in the trees. Sometimes He speaks to me in a dream. Sometimes He speaks to me, as well as many others, through our priest at Mass. Today, He chose music... today it was a song, that lead to a bible verse Matthew 16:26

It's added a lot of clarity to some very big things we've got going on right now in our family.

LBI

Pope's first trip to the beach! We went to LBI... Pope loves the water and was fascinated by the ocean. It was a wonderful day!

Rainy Day

It's the last day of our family "stay-cation". We had a nice time taking day trips. Pope went to his first-ever birthday at a farm for 3-year-0ld fraternal twins. We went to the beach and the park and the mall. It was good week. Tomorrow we all head back to the grind.

It's pouring rain today. It's okay because we really need the rain, but it's keeping us all inside for the day.

Little Ambassador!

Pope was selected to be a "Little Ambassador" for the Children's Eye Foundation. You can click on the link to see his very own page! We're so proud of you Pope!

A long way

You've come a long way, Pope... A long, long way...

Park!

Pope's adoption was really expensive. Add to that his medical bills and some unexpected bills accrued by the Princess this summer, and, well, we haven't had the extra money to do much of anything. There have been no extra funds to go to the zoo or the amusement park. We don't eat out or go to the movies. One place we do enjoy, because it's FREE, is our local park! Yesterday evening Pope even gave the tire swing a try... He LOVED it!

There is a suspended tire in the "little kids" section of the playground (meant for kids under 6 years old) it's not a swing, but good for climbing and exploring... Pope enjoyed that too!

The next 2 photos are kind of fun... The first was taken in the big tire back in the fall of 2006, after the Princess turned 2 years old.

And here's the same tire, with the Pope, age 3. Funny, isn't it?!