School Placement for Roxie

About 4 weeks ago we began discussing the possibility that Roxie may do better or just as well outside of her current school, Metro, which is a separate public school for children with severe special needs. Next week we are meeting with representatives from the EC office at CMS to find out if they agree that Roxie has progressed enough to go to a typical elementary school in the fall. She would be in a separate SAC room with only children with special needs and she would still receive services for PT, OT, and speech. But she would spend some amount of time every day among typically developing kids (during lunch, music, art, PE, recess, etc.). And she would relish that time! Roxie loves spending time with other kids, especially ones that can interact with her. Currently only one of the children in her class at Metro is able to interact playfully with Roxie. But we know from watching her at home that when her siblings or her cousins play with her she lights up. Unfortunately Roxie could not go to school with her sister, as there are no SAC rooms at this school. Not only that, but there are only a handful of schools with these SAC rooms for special needs kids and because of all the budget upheaval at CMS I am not even sure where these rooms will be located in the fall. We hope to hear in the next few weeks from CMS regarding their decision.

When I think of moving Roxie to another school I feel some excitement, but I also have many reservations.

Will there be enough staff in the SAC classroom (currently she is in a room with 5 kids and 3 teacher)?

Will the sensory issues she has experienced this year at school be any better at another school? (Currently some of the non-verbal kids in her class make noises throughout the day that make Roxie extremely upset. She often has to leave the room in tears. She experiences anxiety about going to school everyday because of this.)

Will the school be 30 minutes away and begin at 7:30? (Roxie sometimes isn't away until 7:00 because of sleep issues and she still requires total care in the morning to get ready for school. We make her breakfast, feed her, give her medicine, put her on the potty, dress her, and pack her lunch and back pack. So how can we get her out the door by 7 ?)

Will Roxie be successful in another school? (She is a tough nut to crack and requires dedicated and creative teachers and therapists to understand how she learns and is motivated.)

If a typical school doesn't work out for Roxie will she be able to get back into Metro? (I know that it is jam packed at the moment and CMS will quickly fill her spot if she leaves.)

If CMS does insist that Roxie remain at Metro we are going to do our best to request that she is moved into an Autistic class and hope that she will have an easier time with her sensory challenges in this setting.

As I talk with parents about moving Roxie or leaving her at Metro some are pro-integration and say that moving her to a typical school is definitely the best answer and other say that Roxie will never have her needs met outside of Metro. And some parents, like myself, are thankful that we do have options for these special kids. I just hope we make the right choice for our sweet Roxie as she moves to 3rd grade.

Roxie on a rocket

Spent the weekend at the mountain house; 3-4 inches of snow covered the ground, temps in the 20's, and the sledding was perfect. Here's a video of Roxie sledding down a VERY steep hill with me. She chuckled all the way down and laughed heartily afterward!

One year as Markos' parents

One year ago today we officially became Markos' parents. Here's an excerpt from the email we got from our agency representative:

Hello, Phelps and Kate!
Congratulations on having your adoption finalized and approved by the courts in Ethiopia! You are officially Markos’ parents!!!!

It was a great day. Here's a photo taken right around that time, too ...

More exciting news ... last night, we found out our friends and neighbors the Amedios got their referral, a two year old boy who is adorable. He and Markos will be tight no doubt. So happy for them. They used the same agency, Gladney, that we used, and I think they have been as happy with their experience as we were.

What a year for Roxie!

We are gearing up for our annual fundraiser for Easter Seals UCP and I knew that folks would want more details about what Roxie has been up to. We are glad to report that she has had a good year with lots of exciting development.

Roxie, age 7, is in 2nd grade at Metro School in downtown Charlotte. She has lost a bunch of teeth over the past year and we think that makes her look like such a big girl. She is also taller than little sister McRae, which hasn't happened in years.

Roxie is now extremely mobile and is moving around the house by crawling, scooting, cruising along counters and furniture, and is walking in her walker or with support. It is amazing how quickly she can move now! So we've had to "Roxie-proof" the house, but not before she

got to a few crystal glasses. She managed not to cut herself but did make quite a mess!

Roxie favorite activities are music, swimming and watching movies.

She spent lots of time at a Charlotte Swim

Club this summer with her Easter Seals UCP CAP worker and had a blast floating and playing in the water. We plan to join the Aquatic Center so that she can continue her swimming year round.

Roxie also loves music. She has a weekly Music Therapy class at Queens University. We play music for her in her room and often sing to her. Daddy loves to put on live performances with his guitar, which she enjoys and often helps him strum. We know she likes a song when she tries to hum along to the beat! Roxie also loves to watch movies and enjoys the Wiggles in particular.

Roxie was able to try out horseback riding over the summer at Shining Hope Farms and hope to get Roxie involved with a local group that has riding for special needs children during the fall. We were surprised to find that Roxie enjoyed it and didn't even mind wearing the helmet. She has come such a long way!

Roxie still has been having seizures about once or twice a month, but we are able to stop them with a strong dose of medicine and the episodes don't seem to affect her development at this point. We continue to give her daily supplements to help with her Mitochondrial disfunction and we believe that these supplements are partially to thank for her development over the past two years. We have great hope that Roxie will continue to develop and are grateful that she is a generally happy and loving child. The Sprinkle family hopes to see you all soon and invite you out to the Easter Seals Walk With Me at Freedom Park on October 16th. You can make a donation to Roxie's Rocket's to benefit Easter Seals UCP. Thank you for all of your support!

July 21st memory

Tomorrow, July 21, is the one-year anniversary of when we found out about Markos from our agency! July 21 was the beginning of an amazing journey that is only a year old. Crazy, because even though it seems like just yesterday, we feel like he’s been part of our family forever. We feel extremely lucky and blessed. Here's a recent photo of the three kids with their three cousins at the beach this summer.

New use of EEG's

Fascinating new use of EEG's ... Excerpt: “Research shows that almost 50% of children diagnosed with autism are actually suffering from hidden brain seizures.”

Complete

We have got a boy, and I mean BOY, on our hands. Whew. I tell you. We're sitting at a Starbucks in Dulles airport waiting for our final leg to Charlotte this afternoon, and Mr. Markos David Sprinkle is about as active a two-year-old as I've ever met. Of course, it might have something to do with the fact that he slept about 14 of the 18 hours we were on the plane from Addis Ababa to DC! He's experiencing many firsts today, and he's clearly eager to keep the string alive leading his mom all over the airport while I type. This is gonna be fun.

The trip in its entirety was a once-in-a-lifetime experience, and we can't wait to share our stories, photos, and videos. For the next 24 hours, however, we just want to get home and settle in a bit. Thanks to our family for making this so easy on us. Thanks to our friends for all your love and support. Can't wait to introduce you all to Markos.

Leaving for Addis!

Phelps and I leave tomorrow for Ethiopia to pick up our sweet boy, Markos. We will arrive in Addis Ababa on Sunday evening. We will be driven to the Gladney Care Facility to meet Markos on Monday. I can't believe the day is almost here! We will try to send out an update on the blog once or twice. We hope to return on the Saturday following Thanksgiving if his visa is ready on time. Keep us in your thoughts and prayers!

Thank you ESUCP Walk With Me supporters!

Easter Seals Walk With Me Charlotte 2009 from Topics Education on Vimeo.

It's official. We have a son ...

Introducing Markos David Sprinkle!

October 14, 2009
September 13, 2009
July 2, 2009

Adoption Court Date Tomorrow (Oct 20)!

Our court date, originally scheduled for Oct. 5th, was delayed until Oct. 20th. But that day, which seemed so far away, is now almost here. We do not have to appear in court in Ethiopia. Our agency will appear on our behalf. Then our Gladney social worker will call us tomorrow to let us know what happened. So think of us tonight and keep us in your thoughts and prayers that we may get good news tomorrow. If our court case does get heard and the judge states that our paperwork in in order, we will be given a travel date by the embassy. Typically the travel dates are 3 to 4 weeks after your court date. So we hope to travel by mid November if all goes well tomorrow. Another delay is always possible, but we are hopeful!

Walk With Me: StRoll in the Park news coverage!!!

David Perlmutt with the Charlotte Observer interviewed me earlier this week for his blog, The Cliff. The blog was created to highlight the crisis facing Mecklenburg's nonprofit community and to raise awareness for the many great organizations, like Easter Seals UCP, that are part of it. Here's a nice piece he wrote about Roxie and the Walk to help promote Saturday's event.

Letter to our son

We sent the following letter and photo to our son yesterday. Our new court date is next week (October 20), and, if all goes as planned, we will travel over to Addis Ababa 3-4 weeks after that. Fingers crossed. (Note that until we finalize the adoption, we cannot post his name or photos, but we sure wish we could!)

Dear [Son],

We cannot wait for you to be a part of our family. We live far away
in America and will come all the way to Ethiopia where you live to
meet you. We’ll have many adventures together including riding on an
airplane, exploring new places, eating new foods, and meeting your new
sisters, Roxie and McRae. They can’t wait to play with you and show
you around our house. And you will meet our dog, Sully. He is very
sweet and I’m sure you and he will be good friends. We hope you liked
the trucks, clothes, and pictures we sent to you.

With love from America,

The Sprinkle Family

PS - Give your caregivers a big hug from us for taking such good care
of you!

"Court Date: Oct. 5"

That's what Kate wrote on a scrap piece of paper and placed in front of me during a Walk With Me committee meeting this afternoon. She had just answered a call from our adoption agency rep who told her the great news. We were only three days from the courts closing for five weeks for the rainy season, and we were thinking there was a good chance we wouldn't get a date scheduled in time. Not only did it get scheduled, but it got scheduled for the first day the courts are scheduled to reopen. If we get approved the first time (typically 80% of cases go through first time), we could be traveling before November 1. We'll see. So freaking excited ... so much to do to get ready!

Ugh, just when we thought we might be in the clear ...

After nearly eight months seizure-free, Roxie had another breakthrough seizure tonight, an hour and a half after going to bed. Kate went up to check on her around 9:40 and she was making a rhythmic sound, but didn't appear to be doing anything other than sucking her thumb. To be sure, Kate leaned in and pulled her thumb out of her mouth, saw that her eyes were open, and realized she was seizing. She carried her downstairs, we administered the diastat, and she stopped right at 5 minutes. 5 minutes later, she went to sleep.

She's opening her eyes periodically, but otherwise, seems to be resting and/or sleeping. Her heart rate got up to 154 during the seizure, but nothing scary. She is breathing fine and her heart rate is normal. Her temperature is normal as well. We don't know what caused this. Same as the four breakthrough seizures she had last Fall. Hope this isn't a sign of things to come for this Fall!

Anyway, the positive is that we brought Sully in to see the seizure before it stopped. He watched her and licked her for a couple minutes before she stopped seizing. Hope that will be helpful in future training. I did NOT get a video of it, however, which I'll try to remember for when it happens again. Supposedly that helps a lot in training a dog to alert.

Roxie's eye surgery

Our sweet girl is home resting after a long day at the hospital. Her eyes look pretty rough right now (swollen a bit and very red), but she is already moving them together better making us think the strabismus was at least somewhat corrected. Surgery lasted a little more than an hour and a half and there were no surprises. We spent a lot of time before the surgery talking with the anesthesiologist to make sure their plan for her was appropriate for someone with mitochondrial disease.

The one drug they did end up using to put her under was propofol. This drug was on a list we were told at the UMDF conference last month that mito patients should avoid. But after discussing it with the doctor, it was clear that it was the better alternative as the other drug was a potential culprit in malignant hypothermia which we did NOT want. Also, we were told they had used propofol on many mito patients before. We were impressed that the doc seemed to know so much about mitochondria disease ... a good sign it's getting more attention.

Anyway, she was groggy and a little fussy this afternoon, but mostly her usual self, minus the eyes being swollen and red. She would not eat much either, including her medicines. Not much we can do, so we gave her a cold compress on the eyes (boy, she loved that 1 minute treatment ... best to do 10 minutes, of course) to keep the swelling down, put more antibiotic ointment in her eyes, and recited Goodnight Moon. She fell asleep almost immediately. Poor girl.

In the morning, she is likely to have serious "mattering" around her eyes, otherwise know by the technical term of "eye boogers." But she should feel much better they tell us, and hopefully she'll eat something and take her meds, too.

It will be a couple months before we know how well the surgery will result in correcting her strabismus. If all went well, there will be no more need for additional surgeries, her eyes will work well together, and she'll start using them both at the same time. That would be fantastic and would really help her development we think.

Sully the Wonder Dog Returns!

OK, so he's not exactly a Wonder Dog, but he's just as sweet and a heckuva lot more willing to sit, stay, come, fetch, and heel than he was before. Advanced training is over ... after a few months, we'll be looking at specific tasks for him to learn to be able to help Roxie. It's great to have him back.

McRae refused to sleep anywhere else than on the floor beside him in our bedroom tonight, so I guess she feels the same way.

Our son turned two today ...

... and we don't even know him. We can't wish him a happy birthday, hug him, or play him a tune. Kind of a weird situation to find oneself in. But we've been thinking about him all day.

Roxie and McRae are going to have a brother!

Big news! Today, we accepted a referral from our adoption agency, Gladney, to adopt a two-year-old Ethiopian boy. Unfortunately, we cannot share his name or photo on the internet until the adoption is finalized, but suffice it to say, he is an adorable little boy. His caregivers describe him as a sweetheart, happy, jolly, playful, active, talkative, well-adjusted, and with a sense of humor that makes everyone laugh!

Our son-to-be had a very difficult life prior to being brought to Gladney in late December 2008. His father (a farmer) died when his mother was eight months pregnant with him, and his mother died when he was only seven months old. Both deaths are thought to be from malaria, but as the resources are so sparse where he was born, this information comes second-hand from the uncle who brought him to the orphanage. Regardless, as we've pored over wikipedia and google maps the past two days, we've learned a lot about Ethiopia and the region from where he hails. It's a tough place to live, and it seems as though that's all a lot of people there are focused on: getting by. It has been very sobering and humbling, to say the least.

Needless to say, however, we are ecstatic and light-hearted about having taken this most crucial step in the adoption process, and hopeful that the remaining part of the adoption will go smoothly. We are amazed at how quickly everything has progressed to date. After 4-5 months of work (mostly by Kate) to get all our information in order and to the right authorities, we got onto Gladney's waiting list on June 3. Just 6-7 weeks later, we got this referral. Amazing.

Next steps. Our case will now be put in line for a court date in Addis Ababa. With the rainy season only a month away (the courts close on August 21 for a month or longer for the rainy season), we are hoping to get an assignment made soon. If so, we could have a court date as early as October and be traveling over to pick him up 2-5 weeks thereafter assuming everything were to go through on the first try. But it's also equally as possible -- maybe more likely -- that we won't even get a date set until October or November which could push us into 2010 for travel.

Regardless, we are giddy with anticipation and filling our free time researching anything we can about our son-to-be's culture and environs. Both McRae and Roxie seem excited about the prospect of having a "brudder," though clearly they don't completely understand, and it doesn't seem real to them. It will soon enough! We can't wait to see what tomorrow brings.

Sully Boy

Sully joined our family earlier this year. In July, a trainer is going to take him to be trained as a service dog for Roxie. He'll learn how to wear a handle that will allow him to help her walk. He'll learn to pick up things for her, and to help her transition from sitting to standing and vice versa. He may even be able to learn how to detect seizures or at least alert us when she is having one. Amazing. He's already a huge part of the family ... and it's only going to get bigger!