After 24 hours of traveling we finally arrived in Mielno, Poland. As usual, Parker charmed everyone along the way. He is such a great traveller. The pilot of Scandinavian Airlines even invited him into the cockpit. Where he showed Parker the controls and even asked him to press some buttons. All to his and our delight. Our journey began in San Diego, then to Los Angeles, London (for a 6 hour layover), Copenhagen (the most beautiful airport I have ever been to), Gdansk (where WWII started), and ending in Mielno.

Mielno is a quaint seaside village on the Baltic. With lovely cobblestone roads, a gorgeous beach with the finest sand and ice cream parlors galore. The architecture comes in all styles here – Tudor houses, log buildings, ultra modern, and retro modern. It seems that they are always constructing a new building to get ready for the high season – summer. Thankfully we are not visiting during that time, as we hear it is quite crazy with partying all night long and packed beaches. There are arcade and carnival style games everywhere. This time of year, it is very quiet with a lot of stores still closed for the season. The majority of the visitors this time of year are here to enjoy the “sanitoriums” – health spas. The Baltic is known for its healing properties. I would have to agree.

Our hotel is The Hotel Syrena (mermaid in Polish). It Is a 3 story hotel, one building from the beach, with views of the Baltic Sea from the 3rd floor pool. The pool is, of course, one of Parker’s favorite places. With his second favorite being the game tables – air hockey, foosball, and ping pong. The hotel grounds are beautiful. They have a huge playground and bonfire pit amongst the trees and rolling lawns. The rooms are all varying in size, shape and comfort. Since this is our second trip here, we knew which room we wanted and feel quite at home.

We arrived a few days early, to get accustomed to the time difference (9 hours ahead). We met up with our good friends, Liz and Archer, that have attended many MNRI camps with us. For our day off we strolled the boardwalk, perused the local amber and tourist shops, enjoyed a wonderful fish dinner at Meduza’s, and finished with the kid’s favorite – ice cream. Parker had his ice cream dipped in chocolate!

Sunday was arrival day for most. The rain arrived with them, but that did not deter us from having a great time playing games and swimming in the pool. Our first session was the “meet and greet”, where Dr. Svetlana Masgutova spoke about all the wonderful research she is doing and the amazing progress the children (and adults) are making. The room was filled with hopeful anticipation for another successful camp. This camp has 26 participants, with most of them being children of varying abilities and challenges. The most exciting part was to see that all of our friends from last year’s camp have made a lot of progress.

Camp, Day 1

Wow, this day flew by. Our day began with Art Therapy, which Parker (and I) love. Our therapist is Joanna. She quickly took to Parker and discovered his love for creating. She brought out a huge block of real clay and had Parker start kneading it and squishing it. He used his fingers, hands and even his bare feet. By the end of his session he had created two chocolate chip cookies, a guy on a surfboard, and a small bowling ball. He’s hoping to paint them next.

Next, we had our assessment with Dr. Masgutova. In the past, our assessments were usually with other practitioners in the room. This time it was just Svetlana, which made it very personal. Parker had many, many improvements since last camp (almost 3 months ago). For example, he is eye tracking a fine point now, instead of a picture. His movements are more automatic, instead of a concentrated effort. We are very proud of all the hard work Parker has put in to accomplish this. We spend an average of 2 hours a day on our home program in addition to daily swimming, weekly hippo therapy, and monthly sessions with our Feldenkreis and Anat Baniel therapists. All of which he does with an amazing attitude. He is our super hero!

The assessment is then reviewed with Parker’s personal therapist team that night to plan his sessions accordingly. This way, all of his sessions include exactly what he needs to further his progress. Some of his therapists get this list early to start implementing his personal program immediately. What an amazing team!

Our third session for the day, was Auditory and Facial Reflexes with Adriana. Adriana was one of our therapists from our very first MNRI camps in Buena Park, California in January, 2010. At the time, she spoke very little English and we spoke no Polish, yet she taught us our program expertly. We have seen her at other camps, but had not been assigned to her again until now. Parker was thrilled to have her and didn’t complain once, even when she did his Oral work (inside his mouth).

Next, we had lunch (called dinner – as it is the main meal of the day). Lunch in Poland always consists of shredded cabbage, carrots and beats – very colorful. Then we have Zupy (soup). Today it was a lovely chicken broth with noodles and broccoli. The main dish was meat (still trying to decide what kind) with gravy, green beans, and mashed waxey potatoes. Parker was not thrilled at all with his meal, so spent most of lunch passing out bananas to…everyone! What a riot! After lunch, we strolled the boardwalk to our favorite ice cream and coffee house. The owner remembered us from last year (that’s what happens when you visit daily for two weeks and can only communicate with pointing and smiling). Parker chose a waffle with whip cream (which are very popular here). I had the amazing coffee – espresso with thick hot chocolate – yum! The weather was sunny, the water blue, the temp?…12 degrees Celsius (that’s 55 degrees to us Americans).

We made a quick walk back to our hotel for Parker’s Neurostructural session with another favorite therapist – Karolina. We also met her at our first camp in Buena Park, California. She has amazing hands…Parker says he always feels great after her sessions. Of course, Parker sent us out of the room so he could have some alone time with her. What a flirt!

Next, Parker had his reflex repatterning session. Malgorzata (Gosha for short) showed us a few new techniques, since Parker had progressed to a new level. This was our first time having her, but we had met at several camps in San Mateo, California. She is from an area near Gdansk that has it’s own language – Kashubian, which is a subgroup of the Slavic languages. It is the only other officially recognized language in Poland.

After our reflex work we met Marzena, our Tactile Integration specialist. Tactile Integration is a really relaxing session. While Marzata worked on Parker, I read him “You Wouldn’t Want to be a Ninja Warrior”. Though, I think Parker would love to be a Ninja….

Our last session for the day was Archetypes, with Parker’s favorite therapist to flirt with, Johanna (Asha). We were, obviously, sent out of the room. We had Johanna last year in Poland, where he first started sending us out of the room for alone time with the cute Polish therapists. The therapists tell us he entertains everyone with his stories and singing while we are gone. It’s a nice break for us and we spend our time getting to know other like minded parents in the hallway. The families here are so dedicated to their children. It is so nice to have everyone accept our children’s differences and understand the beauty in our special children. We truly are blessed to have the relationships we do with our children. A bond like no other.

Now, for Supper. Usually, in Poland, Supper would be a small meal of a sandwich, but since we are from all over the world and our kids work really hard in their sessions, they serve sandwich fixings and a main course. Today it was a traditional meal of Golabki – cabbage rolls stuffed with meat and rice. They also served baked breaded fish (the kid’s favorite). Parker quickly finished his meal and spent the rest of the meal inviting

everyone

to our room for a party, including the therapists (of course). And to our delight, they popped in to say “hi” on their way to their meeting with Svetlana. Our party turned into a fun night with the kids dancing and watching The Muppet Movie and the adults enjoying some wine. It was great getting to know our newest friends from Belgium – Ishtvan (the Dad), Galague (the Uncle), and Amalina (the sweetest girl).

Camp, Day2

Wow, our first day flew by and now for day two…

Our schedule was the same with the exception of Balance Board Class (proprioception and cognition) replacing Art. Our Balance Board session was shared with our friends from France that live in Sweden (Tomas, his adorable daughter Anabelle, and her Grandmother). We met Tomas and his wife and daughter last year in Poland. Anabelle understands French, Swedish, English and Sign Language. How cool is that? Our Therapist was Paulina. She definitely gets a workout working with our kids. Parker and Anabelle sat on balance boards and giant balls to work on head righting for balance. Then Parker got to walk an obstacle course on top of balance boards. Wow, he really is much more stable on uneven surfaces. He is now leading with his head when he steps up and not tightening up. After a few times across, he started doing it only holding one hand. You could see his pride. Then he practiced his rolling while listening to Mozart. He was pointing out all the different instruments he heard. After that, Svetlana had specified that he should crawl through a material tube that fit snug but stretched. The tube was about 15′ long and he had to crawl low and use arms and legs to make it to the end. Half way through he announced, “My pants! They’ve pulled right off of me!” To which the room burst into giggles. He did this twice, having a much easier time the second time through. He finished his session with spinning sitting up with his eyes closed. When we stopped, he would open his eyes and look at a colorful object at eye level hanging on the wall. What a fun class! Paulina rewarded him with a game of Foosball.

At lunch, Parker and Archer ate quickly so they could deliver home made donuts to all the tables. They are so cute. How could you say no?

At the end of our day, we had a break and enjoyed the play ground with our friends, Deep and Amarita, from Minnesota. We met them last year in Poland and have seen them in the states a few times since. The kids had a blast on all the different structures. Parker scaled the log ramp without one slip (last year we had to help him). They both hopped on a double swing and managed to get it swinging all by themselves. They have both come a long way!

Dinner was baked chicken wings with veggies, sandwich fixings, and fried bread with sugar. Needless to say, we hit Pharoh’s for our traditional “Funghi” Pizza (mushroom). The pizza here is so tasty. Who would have known? Side note – there seem to be quite a few places named after Egyptians here…not sure why.

After dinner the boys hit the pool. Parker is now able to pull Kevin across the pool while Kevin is lying on his back. Just like a lifeguard does. He also got on a noodle all by himself without holding onto the side of the pool or falling over. Now that’s balance!

Time for bed now. Early night, after a full day. I’ll try to post some photos tomorrow.

Camp, Day 3

Now our routine is setting in. Once again, Parker sent us out of the room for Oro/Facial and Neurostructural. He entertained the girls with his new EFF “football” (soccer) guys. One of our favorite therapists from last year, Elzbieta, gave them to him – one is dressed as a Polski player, the other a Ukraine player (where Kevin’s ancestor’s are from).

I started learning new moves in our reflex repatterning session from Gosha. She is an excellent teacher. Dr. Svetlana Masgutova worked on Parker as well. She is amazing to watch. She knows exactly what Parker needs and goes in deep and with expert hands. We had a little time to talk with her about possibilities for a permanent location in the states. This method really needs to be made available to more children.

On a side note, we watched Svetlana work with another woman, Marta, whom we met last year. When Marta was in her early 20′s she was in a major car accident that left her in a Coma for 9 years. Last year, at camp we saw her come out of the Coma and lift her arm for the first time and show expression for the first time. This year she is even more responsive. We found out she speaks multiple languages and we speak with her in English. She responds with blinking and can see her spirit come through. Such an amazing site as the traditional doctors said there was no hope and to “pull the plug”. We are so thankful that her parents did not listen to them and that they found Dr. Masgutova. We can’t wait to hear what she says when her speech comes back.

Today, Parker spent lunch delivering grapes to all the guests with Archer. They have quite a business set up!

After lunch, Svetlana (Dr. Masgutova) had a parent meeting to explain the work more. I recorded it this time (thank goodness for iPhone technology), so I wouldn’t miss a thing. In a later blog post I will write about it. We met on the top floor of one of the buildings. Afterwards we went out to enjoy the views. One direction we could see the Baltic stretch on and on. When we turned around we could see Lake Jamno, which is a large lake that we hope to enjoy on our day off (only a few blocks away). Mielno is just a spit of land between the two waterways. How beautiful!

During Archetype, Kevin and I walked to the Grocery Store (called Polo) for water and fresh fruit. The Polo store is a large square red building on the edge of town. They have a few little stores inside for magazines, clothes, and toys (like a drug store). The shopping carts are locked up and you have to pay 5 zloty (around $1.50) to use one. In the grocery store, the fresh meat section is huge and the bread looks like it was just baked. It is fun to walk the isles and guess what all the packages are. The names on some of the products are really funny (like cookies called “crack”) The water here comes in plain or sparkling and it is always a gamble as to which one we are buying. The locals don’t seem to line up, they just barge for the front…maybe they are used to the old communist days.

We had some quiet time in our room for our hour break. Parker watched a movie, while we worked. Our staff are working hard to sell everything in our stores while we are gone! A big thank you to them!

The last session of the day was Art Therapy – Yay!! Parker has been anxious to get back in there to paint his surfer guy and other clay creations. His Polish friend, Simon, joined him. Simon is 12 and is a great substitute for Parker’s favorite cousin back home, Kanan. Simon is the therapist Elzbieta’s son. We met him last year at camp. After painting, they made clay “angry birds” together.

Tonight, we decided to pass on the Pierogis (Traditional boiled dumplings filled with potato and sauerkraut and covered in sauce) and walk into town for fresh Ryby (fish). We found a great place that bakes the fish in a wood fired oven (Taverna). They also have pork cooking on a spit over hot coals. The fish we had tonight was fresh from the Baltic – Losos (salmon) and Dorsz (cod). It melted in our mouths. A hush fell across the table as we devoured every last bite. The night wouldn’t be complete without a visit to the ice cream parlor. Parker had Stratacelli tonight (vanilla with chocolate flakes) and Archer picked vanilla with sprinkles. I love how they scoop the perfect amount for the kids – about the size of a ping pong ball.

Now to get the boy to sleep so the “Birthday Fairy” can show up and decorate his room….

Camp, Day 4

Parker turns 8!!!

Parker awoke to a room full of Birthday decorations…hanging rock star, drum, and skull decorations and an astronaut bear from the Air and Space Museum (that he has wanted for two years) laying on his pillow. He exclaimed “the Birthday Fairy arrived!”

You would think having a Birthday filled with therapy lessons all day would be a drag, but not in Poland. Svetlana greeted him in the hallway and gave him a huge Birthday hug. At breakfast, Parker sat with his best friend, Archer, and was immediately surrounded by all the therapists singing him Happy Birthday in English and Polish. His smile went from ear to ear.

Everywhere he went he was greeted with Birthday wishes in many languages. He was a champ during all of his lessons, as usual. We are so fortunate to have such a good natured son, because today they scheduled his BAEP (brainstem auditory evoked potential/response) and VEP (visual evoked potential/response) exams. A specialist from Poland and his team came to study our kids and their response to auditory and visual stimuli before, during and after reflex repatterning to see how quickly the information reached their brain. Parker had this same test last year at camp, so we were very interested to see how his results compared to his previous testing. For the test, they hook up electrodes to Parker’s forehead, top of head and behind each ear. For the BAEP test, they put head phones on him and he listens to a series of beeps while the computer records the time it takes for the sound to be recognized by the brain. For the VEP test, they have him look at a strobe light to see how long it takes for the light to be recognized by the brain. They do this test first, then a repatterning specialist works with him, and they perform the same test again. It is not the most comfortable testing, but Parker handled it in style and upon leaving said “Dziekuje” (Jen -koo – ya), which means thank you. What a stud! We should get the results in a few days.

We went directly from our testing to Tactile. Marzena did a great job relaxing his system after his testing. When we left, Parker made his first transition up a non visible ramp without falling. His transitioning over bumps, thresholds and varying ground materials is becoming natural now. I noticed his toe catch on a one inch threshold without faltering. That is going to make for less bumps and bruises! And less breath holding for me…. I can feel the worries melting away.

When we arrived for lunch, Parker immediately saw the HUGE tray of chocolate cake. What a wonderful surprise! We sat him at the head of the table facing the room, so the singing would delight him and not surprise him. Within minutes the entire group was standing and singing Happy Birthday in English and Polish and presenting him with gifts! Svetlana gave him a 4×4 toy truck that can climb over curbs (just like him). With a big smile, Archer gave him an awesome plane to fly on the beach and glow in the dark stickers. She is so sweet. He spent the rest of lunch inviting everyone to the Disco for his party.

At Archetypes Asia (pronounced Asha) gave him a bag full of chocolates… Shhh don’t tell Svetlana! Then we took a rest in our room and opened a few small presents from us as well. Afterwards we took a nice stroll for ice cream and chocolate coffee. Cotton Candy flavor today!

We finished our lessons with Balance Board. More improvements… Better head righting on the balance board and ball, he was so much faster through the material tube (quite a difference from the first time), and better leg lifting on his rolling. It is so exciting to see him making these changes so quickly.

At dinner Parker wanted a “kids only” table. Archer and Simon were his companions and they played more than ate, as expected. Amrita presented him with a giant homemade Birthday card that she made in Art. As dinnertime was dying down, Svetlana ran in with a Gofry – fresh waffle with fruit and whip cream – that she ran all the way up the boardwalk to get just for him. She was even late to her own meeting! What an amazing gesture of love.

Then the partying began! The back room turned into a disco with a flip of a switch. With disco balls, an amazing light show and thumping dance music! The children and parents started showing up…with huge smiles and lots of boogying! There were hats and streamers for the kids and Tizke beer for the grown ups. Parker announced, “it’s time for the games!” and the dance contest began. Everyone took turns dancing in the center and Parker claimed Amrita, with her awesome knee touches, was the winner! (how sweet) After a little more dancing, Parker whispered in my ear, “I’m ready for bed” So, we snuck out of his party and went to our room. Rumor has it his party went on for another hour. It is so nice he knows when it’s time to call it quits.

Camp, Day 5

Wow this week is flying by! Though, today was our tough day. We usually have one day of camp that is a struggle and today was it. They call it “crisis” day. Think terrible two’s, frustrations and split personalities…. The kids hate it, the parents like it. That’s because we know it means they are having a break through and better results will come. Thankfully the practitioners have lots of tricks up their sleeves for days like today – music, toys, smiles and lots of patience.

Thankfully, we had a break after lunch and Parker was back to his normal self, albeit still tired. He groggily went to art, where his buddy Simon woke him right up with a puppet show. Then they painted Angry Birds! Joanna showed Parker how you could put a marble in a balloon for a home made toy. When you throw them they wiggle and make you giggle! Parker decided he wanted to make one and commenced to try to blow a green ballon up, which he has never been able to do. Guess what? He can now! He was so delighted, he kept blowing it up and letting it fly, so he could blow it up again. What an accomplishment! Next, he discovered the face paint crayons and the perfect canvas…Dad’s head! Thankfully, Daddy is a good sport, because his head was covered in every color by the end and so was his face, my face and Parker’s. I think there are a few photos being spread around Facebook of the crazy American family! People are still talking about it…

After our last session of Facial, we bundled up to go out for dinner. One of our friends was leaving in the morning and we wanted one last meal together. His wife and daughter would stay, but he needed to get back to work in England. Fourteen of us headed out in the cold. It was a warm windy day (with a capital W) and a storm was heading in…we could feel the rain starting. We all managed to get to Taverna before the downpour started. We pushed all the round tables together and took over the entire restaurant. I’ m not sure who was more excited to eat out, the parents or the kids. We ordered plates of fresh Ryby (fish) – Losos (salmon), Dorsz (cod), Wloszcyzna (vegetables), Frytes (French fries), and Fungi pizza (mushroom pizza). Have I mentioned how amazing the pizza tastes here? It is baked in a wood fired oven, with the freshest of ingredients, and sprinkled with herbs… Mmmmmm! We ate, told stories and talked about our home life. We were from England (Birmingham), Canada (Montreal), and the US (California and Minnesota), yet all had a lot of similarities including health care systems that weren’t helping our kids. It was wonderful to be in such great company with caring parents that put their children first.

The rain let up just enough to run to the Staly Lad Caffe (pronounced Shtawy lad) for desert. The Staly Lad is a cute cafe on the boardwalk with a patio filled with basket style lounge chairs and an interior decorated like a home parlor. Very quaint. The deserts were some of the nicest I’ve seen. They also made amazing drinks – fresh fruit smoothies, teas filled with slices of fruit and spices, coffees with fresh cream and chunks of chocolate – very indulgent! The kids stayed up way past bedtime and were dozing by the time we left. We actually walked home in the dark. Which must have been late, since we had not seen it dark on this trip yet – the sun sets much later here than at home (thankfully we have black out curtains in our room).

Camp, Day 6

Last day before our much needed day off! Yay!!

Svetlana was leaving today and made one last round, giving all the kids some wonderful attention and cinnamon drops on their tongue to help “enlighten the brain”. I got some too! Today she did some Cranial Sacral work with Parker where she places her fingers in the roof of his mouth and pulls up while his legs are gently pulled down. Fascinating to watch. Hard to believe he used to hate anyone working in his mouth.

Today, we celebrated Archer’s 5th Birthday! We celebrated a day early since her actual Birthday was on our day off and most people would be out and about. So, there was plenty of singing and present giving. Svetlana picked out a pink Barbie for her, that was a huge hit! Archer’s Mom, Liz, is an amazing baker (owner of Tartine in San Francisco) and threw together a layered cake, with meringue cookie toppings, all without an oven. Needless to say, it was beautiful and well received by everyone.

Tonight we hit the pool for Archer’s Pool party and some much needed play time. Lots of swimming, diving and giggles. Our new favorite thing? Saunas! They have one Infrared sauna (lower temperature, but warms you up from the inside) and one traditional hot coal sauna. They put essential oils in the water that you poor over the coals. Tonight we used one that had cinnamon, mint, lavender and citronella in it. What a lovely smell. Note to self, my next house will have a sauna.

We snuck down the hall late tonight and decorated Archer’s door for a surprise….shhhhhh!

Camp, Day 7…Day off!

Happy Mother’s Day! Today was Archer’s real Birthday, so we begun our day with presents before heading out for a real breakfast. It was sooooo cold today. What a shame, our only day off and too cold and windy to play on the beach. We bundled up and ventured up the boardwalk to a place we went to last year that had the best scrambled eggs. There is such a difference between our American mass produced eggs and the ones from here. They put fresh bacon in the eggs and served them with the amazing tomatoes and fresh baked bread…mmmmm. Parker also enjoyed a hot Gofry (waffle) with Crema. Our friends Ania and Zunita joined us and Archer and Liz came a little later. Afterwards the kids went on rides on the colorful toy cars for 2 zloty a ride (about 70 cents). They loved them so much we could barely pry their hands off them, but we were freezing! So, we ducked into another ice cream shop, Caffe 888, for a coffee. Then it was time for shopping! Most of the stores are made in temporary style buildings and they are filled with trinkets like colorful wigs, plastic toys and souvenirs. My favorite shop is Ambre, the high-end Amber jewelry store. It is in a permanent building with great architectural details just a block from the beach. We met the owners, Piotre and his wife, last year. They were happy to see us back and to see Parker doing so well. We bought a few of our favorite amber discs for gifts and Parker bought me an amber barrette for Mother’s Day. I’m sure we’ll be back at least one more time.

We strolled to another giant trinket store that had more rides outside. Parker rode a rainbow colored military tank. We couldn’t stop laughing when the music came on playing Christmas songs in English! Only in Eastern Europe! After that, we strolled down the cobblestone road towards the Polo market. The hotel ran out of purified water two days ago and we needed to replenish our personal supply (you can’t drink the tap water here). On our way we saw some old stockades and a Memorial from WWII. It looked so out of place with a trinket store in the background.

Then we strolled to Lake Jamno. It is a large lake that has paddle boats that look like cars and unusual sailboats. We walked to the Yacht Club, but no one was there for us to exchange Burgees. We’ll try later in the week. While we ere there we walked the single dock to checkout the boats. We saw one sailboat that had notches in the side for oars. Another wooden platform had a mini trailer on it and an engine – like a home made houseboat. We did our best to smile and get an invite for a ride on a sailboat, but no luck.

On our return to the hotel, we walked the back streets to check out the scenery. There were mostly hotels of various sizes and styles, lots of construction. We saw one building that was purple, one that was built of logs like an A frame, one that was lined with bicycles for rent, and lots of old caravans parked in lots. We assume these are where the summer employees live.

By the time we made it home, it was dinner time – perogis and boiled sausage again. So, we turned around and headed out for Fish and Pizza on the boardwalk. When we returned we discovered that Jonek, one of our Polish friends, had sprung a leak in his wheelchair and he had been stranded at the hotel all day. Kevin jumped into action and said he would see if he could fix it. With two spoons, he showed Jonek how to take his tire off the wheel. Jonek looked at him with big eyes and called him “Superman” in Polish. We found some nail polish and crossed our fingers that it would seal it. Kevin is getting quite a reputation here.

Camp, Day 8 – last week

Back to work! Yay, we start with Art!! We started our session trying on fun colorful wigs and playing musical instruments. One of our favorite therapists, Maja (she is an avid bike rider/racer and can quote most American movies), joined us for some fun. Parker put on a rainbow Mohawk and banged cymbals! Then he announced he wanted to paint a giant poster. The very creative Johanna glued together 4 large posters to make one giant poster. Parker started by taking a large paint brush and painted a red line all the way around the paper while crawling on his knees. The end result was like a frame. He then sat inside the frame and asked for blue paint. He started painting a man, while describing to us what he was doing along the way, “here are his boxing gloves”, “these are his boxing shorts”… Ahhh, a boxing ring! Next he asked for red and painted the “Punisher”. When asked who the blue guy was, he said “The Tormentor”. Quite an imagination and such a boy. He was so wrapped up in painting that he painted right through his break.

We rushed Parker to facial next (covered in paint) and he immediately sent us out of the room. The girls said he put on a skit with his little Ninja guys. I decided to use my freedom for a nice walk on the boardwalk for coffee while Kevin stayed and rested (he’s fighting a cold). On my walk I popped into the liquor and small grocery store for some room snacks. There I saw the biggest apple I have ever seen. It was larger than my hand by far. It was called a jalbyki, which sounds a lot like Jawbreaker to me. The clerk must have had a good snicker when she saw me taking photos of it and the funny liquor bottles. I found some Vodka in a wooden bottle that was carved to look like a bullet and there were plenty of bottles that had soccer themes. The EF football championship was coming to Poland in a few weeks and the country has football fever (soccer). On my way back, I walked the beach for my first time this trip (it has been too cold so far, unlike last year). I even dipped my toys in the Baltic – Brrrrr! I can’t believe some people were swimming in it. Once a year a large group of people come here for a Polar Bear Swim – crazy! A local told me that when it snows, they have bulldozers on the beach to push the snow into the water. So unlike San Diego!

For lunch they served Borscht. It is a yummy dark pink soup with large slices of beets and potatoes in it. The kids were happy when they served chicken, broccoli and fries (instead of mystery meat, gravy and waxy mashed potatoes). Parker, Archer, Amrita and Anaya spent the rest of lunch playing “camping” under one of the buffet tables. It is so nice they get along so well. We could here lots of giggles from the back room as us parents chatted about getting our diagnoses and how we handled it. Everyone seems to have different stories, yet total understanding. We are so fortunate to have this time together and we all feel very blessed to have our kids.

We had a full schedule after lunch. Marzena left last week and we met our new Tactile practitioner, Ewa. Parker spent his session watching You Tube videos of the State Capitols. By the end we were all humming along. We don’t have any time to do sit down school work here, so we get creative and read books, watch movies and do some apps while he is on the table. It is hard to do many apps that use the fingers, since Parker’s system gets very involved when he uses his fingers which isn’t conducive to making new neurological connections. We are noticing his toes are starting to relax more when he works with his hands. We know this is a big component to his development.

After dinner, we hit the pool. Parker’s diving is really progressing. We put a ball at the bottom of the pool and he dives down to get it. He now asks us to move it around into different locations to challenge him. Tonight, he actually dove down and turned around to get it back towards the ladder. Ilana, his water therapist at home, will be so happy to hear.

Camp, Day 9

Balance Board Day! Yay!! Parker started his session on the Balance Board as usual. He was cracking us up as he was pretending to meditate on the board. Wow, his posture was lovely and you can really see his head righting is becoming second nature. He is so comfortable on the board now. Today, Paulina started the cognitive program. As she would lean the board to the right, she would humm or sing a song into his left ear. As the board tilted to the left, she would give facts (like numbers) into the right ear. Then, she would tilt his board to the left and give him a mathematical equation in the right ear and when she tilted the board to the right, he would give the answer. Next, she turned Parker and rocked the board front to back. When the board tilted forward, she sang in the left ear. When he tilted back, she would count into the right ear. It is really neat to watch and to see him figure out the answers.

Next we sat him on a giant ball and rolled it side to side, front to back, and around in circles. Then, he practiced his log rolling. Wow, he puts his arms over his head now to roll and bends his leg instinctively instead of us helping. Next, he worked on his hand supporting by laying on a large soft roll and walking with his hands forward and backwards. He is so strong he can go all the way forward so just his feet are on the roll (without collapsing his arms). Then he walked the “tight rope” (a line on the ground) holding a stick that we were holding. His goal is to walk slowly with small steps. Next, he walked an obstacle course on balance boards turned in every direction. He did this holding just one hand. To finish off the session he crawled through the sock tube. We were all sweaty by the end. What a workout!!

Dennis, Svetlana’s son, arrived today. He runs the Masgutova Institute in Warsaw and has an amazing understanding of child development and the body. We were very excited to see him, as we had met him last year and really enjoyed his positive spirit. Last year we were fortunate enough to participate in a research project with him that used equipment that NASA had developed to test muscle response. It was fascinating work. Kevin and Dennis made plans to get together tonight and discuss some business. We are very eager to make this modality more accessible to families in the states. We’ll keep you posted on this in the near future.

On a side note, while Dennis and Kevin were out, Kevin was asked if he wanted syrup in his beer. I guess it is common to flavor your beer with fruit flavored syrup here. Kevin chose cherry and word has it the Tyskie was even better!

Camp, Day 10

Assessment Day! We started our day with our assessment with Dennis. Parker did really well. He moved up one step in every reflex, but one. His Babkin stayed the same, but we were told this reflex takes longer to integrate. Dennis was really happy with his results and asked who worked with him. Dennis said our next goal is to get Parker’s feet to point forward when he walks. He showed us some exercises and told Parker to practice walking with his feet in different directions, like a clown. At the end, he asked us if we had any questions. We told him no, but we expected him to visit us in Dan Diego.

Next we went to Facial. Dennis followed us in and told Adriana and Karolina what he wanted them to work on for Parker. They both work for him at the Institute in Warsaw and know the latest techniques expertly. So, after his Facial work, Adriana worked on his abductors, adductors, and perroneus muscles (outside of his lower leg). Then we went into the hall to work on walking. Adriana held his hands, while I sat on the floor and turned his feet forward as he walked slowly and with intention. It was very difficult to get his feet pointed forward at first. After one length of the hall, he was able to step and then turn his foot forward after it hit the ground. He really wanted to go fast, but we kept encouraging him to take small steps and slow down. Halfway down the hall, his second time, he was able to point them forward while stepping, but he was now crossing his leg over the other which was tough for balance. At the end of the hall he walked alone and was definitely walking with his toes more forward. Adriana exclaimed, “wow, Parker you are a fast learner” (say this with a Polish accent, it sounds even better). Our friend, Deep, saw his walking and told him he was doing a great job. I love it when other people see his hard work paying off.

We took the stairs later that day and Parker walked up all by himself with one hand on each rail. Very tall and erect, with ease…wow! Next we went to Repatterning and to Parker’s delight, Simon was there to entertain him. Parker is really missing his cousin, Kanan, and Simon is a carbon copy. Even though Simon doesn’t speak a ton of English, they communicate really well. Silliness breaks the language barrier! While Parker was occupied, I learned more techniques from Gosha. She is amazing. Her eyes are the most beautiful color – like light blue ice crystals. She is Jonak’s mom (the one that had the flat tire that Kevin fixed), and therefore has a great understanding of working on/with your own child. She also has implemented the Masgutova Method in several schools in Poland and has invited us to come and tour them. Oh, how I would love to have this program in a school in America. It would benefit all kids. Just imagine the possibilities…kids that are more aware, and ready to learn with ease.

At lunch we decided that Parker had had such a good day that he deserved a gift from town. We promised him that during his break we would go shopping. While he was in his next session, some of us adults got together and planned another night out for dinner….by now the food was getting to us and we couldn’t have another sandwich for dinner. Parker was so disappointed to hear that his plans for swimming at the end of the day were changed that we had to think quickly and talked him into hitting the pool during his break instead of shopping. We promised we would shop on the way to dinner.

After lunch we met with the Doctor that did the auditory and visual response testing to get our report. Parker had an increase in his brainstem auditory response over last year’s testing and an insignificant increase in his visual response. His auditory response transmission is very fast, faster than in other people. The exciting part was that all of his testings showed a slight increase in response after rehabilitation (repatterning). We are hopeful that more research will be done in the near future. To get this modality accepted by American physicians and Insurance companies, we need more published articles and scientific research. MNRI should be in every NICU and available to all, no matter what socio economic status they come from.

Next, we went to Tactile and read a great book about London while Ewa worked with Parker. The book was called “Not For Parents, London, Everything You Ever Wanted To Know”. Parker loved it. He learned all about chopping off heads, Punk Rockers, London Burning, the most popular Football teams (soccer to us Americans), Cockney’s, and much more. We highly recommend this book! Now Parker has a list of places he wants to visit when we go to London (in three days). At Archetypes he told Joanna, and all the others in the room, all about it. He wants to see the heads on the stakes at Tower Bridge – what a boy!

For our break, Amrita joined us for swimming and the two of them had a great time together. Amrita is now able to float on her back and swim under water – so amazing! I think Parker drank too much water, because he came back with a tummy ache. Word spread quickly and before we knew it Elzbieta, Simon’s mom, came into our room to work on his tummy troubles. She is such an angel. Parker was supposed to be in art, so Johanna arrived at our room with full clown makeup on and made him laugh. These girls are amazing! Simon also joined in and recommended a fizzy drink and told Parker it happens to him as well. What a great friend.

Parker was feeling better, so we bundled him up and met a group of friends for a walk to dinner. Sadly, the store that had Parker’s gift in it was closed! What a bummer. We promised tomorrow we would run out for it before the closing ceremony (he wanted a certain hat to wear to the party).

Our dinner was a wonderful break from the hotel restaurant, as usual. We had our usual – fresh salmon, fresh trout, steamed veggies, and wood fired mushroom pizza. Parker got his “fizzie” drink, to help his tummie – a big treat for him. Afterwards, we headed to our favorite Caffe, Staly Lad, and treated the kids to some homemade cakes. We believe they put such hard work into their long days they definitely deserve cake. Giant slices of chocolate mouse cake, strawberry cake and an incredible stacked meringue and date cake were enjoyed thoroughly. Of course the adults enjoyed amazing coffees and teas. We all headed home with big smiles, full bellies and tired children.

When we arrived back to our hotel, we were greeted with the traditional “lights out to save energy”. Literally the lights are turned off in the hallways at night. This would never fly in the US with our lawsuit happy citizens. I’m sure they shake their heads at us as we turn the lights on as we go down the pitch black hallways…. It seems so dangerous, yet energy efficient. They also don’t change the bed sheets for the entire two weeks we’re here. We do get new towels once (such a luxury).

Camp, Day 11

Only two days to go. We were already feeling sad to leave. I asked Parker if he was happy that it was almost over and he replied, “No!” Now that is a testimonial!

Camp, Day 12 – last day

We just finished a great week of therapy at the Anat Baniel Center.   It was a short week of lessons this week.  Just Wednesday through Friday – 5 lessons, three with Cheryl and two with Anat.  When we arrived they both commented on how good Parker felt.  Cheryl commented on how his body felt differentiated and Anat commented on how great his back felt.  It was great to hear that he had progressed in his time off, not regressed.  We had nice long sessions with both of them.  Anat did a lot of table work with Parker lying still while she worked on his ribs, neck and back.  At the end of the session she had him stand and stretch his arm up and look at his hand, while she helped balance him.  He looked so tall and his pelvis was tilted forward and looked like it was in the proper alignment for standing.   

Cheryl also worked on the table a lot with his feet on the roller and adjusting his neck.  Cheryl had Parker lying on his back grabbing his foot with one hand, lifting his butt up, arching his back and tucking his leg under himself.   At one point she had Parker counting his toes with his fingers, each toe was counted with a different finger.  When she went back to work on his neck we noticed his toes were really relaxed and his legs were comfortably straight in a V (he used to hold them tight and straight together during this part of the lesson).  At the end of Cheryl’s lesson she had Parker sit, place his foot to stand, and then stand up tall.  Then she would have Parker walk slowly down the table.  She was working on Parker shifting his weight from one foot to another while he stepped.  He is barely throwing his head back now.  He looks a lot more comfortable and is having an easier time holding his hands down by his hips.  You can even see his happiness in his face that walking is easier for him.  On the drive home, Parker pulled his sock off all by himself and began counting his toes – new trick!  We can only imagine what new things he is going to do at school next week.  We can’t wait to go back up in a month!

We kicked the New Year off with a camping trip in the desert.  Parker showed off his new walker to all of his friends.  Dirt and rocks didn’t slow him down a bit.  In the morning he would launch rockets, catching them on their return in his Daddy’s arms.  In the afternoon, Parker would get all suited up and take his Mom on motorcycle rides around camp.  He is getting really good at steering around the cones.  Later in the day  everyone would load up in their off road vehicles to play on the sand dunes.  Parker loved rolling down the hill and trying to climb back up.  The day would end with the burning of the Christmas trees in the campfire (pretty scary how quickly they burn) and roasting marshmallows (of course). 

Walking in the desert!

We spent the following week in San Rafael for our monthly therapy at the Anat Baniel Center.  This week we had Anat, Cheryl and Joseph.  Parker made a lot of progress.  He is getting more and more comfortable standing.  The fear in his face is lessening with each lesson.  We worked on slowing down while using his walker.  When Parker goes fast, he tends to hunch over and uses his arms and shoulders to support his weight, but when he slows down he stands taller and his form is much better.  So, “who can get there the slowest” is our new game.  We had a remarkable session with Anat midweek.  Anat had Parker stand up holding onto the back of a chair.  She placed a hard tube on the floor and had Parker step on it with one foot and roll it back and forth.  She did this with each leg, in the front and then the back.  You could see his concentration on his face.  By the end he was able to step on the roller and then left the heel of the foot that was on the floor.  Anat then had Parker lie down and gently worked on his back, ribs and neck.  At the end of the session she had him stand up as usual.  He was much taller and straighter and was able to hold his arms down by his sides.  His anxiety of falling had lessened.  He looked much stronger on his feet.  Wow, what a difference. 

 

The next day Cheryl continued Anat’s work and added to it.  Parker was standing with his  arms on the table and pushing his leg backwards trying to push Cheryl’s tummy with his foot.  On the table she manipulated his feet on the roller in every direction possible.  Cheryl also worked on his hips.  By the end of the week, Parker looked a lot more comfortable sitting with his legs straight out front, crossed and to each side.  We left the week with more new tricks!

The next week home we went to swimming lessons as usual.  What a difference.  Parker actually was using his legs in a “normal” kicking pattern when he was on his back.  He was able to push off the wall, float on his back and kick half way across the pool.  He also had much straighter arms when he did the rocket and held his form all the way to the edge of the pool.  We were amazed at  his progress.

We started a new program with Parker this month.  We found a place in North County San Diego, called Brain Highways (www.brainhighways.com).  Brain Highways specializes in showing parents how to help their child form new neurological connections.  Finally a place that teaches us how to help Parker.  The premise is that some children do not have their primitive reflexes integrated into their system (usually due to a lack of mobility in the infant stage).  This can lead to problems later in life – trouble concentrating, multi-tasking, moodiness, learning disabilities, etc.   Through simple patterns and movements they teach the parent how to develop the “pons” and “midbrain” of their child, so the cortex can do what it is intended to do.  Our class is filled with mainstream kids and their parents aged 3-5.  We spend around an hour playing on all types of moving objects (spinners, swings, hammocks, trampolines), playing withall types of sensory objects, and moving all around the floor on our tummies.  Parker has a ball.  The class is fast  paced and we leave wanting to stay and play longer.  No problem, because we are instructed to do similar games at home every day along with 35 minutes of creeping and patterns.  To encourage Parker to do his
“brain” work, we made a poster to log his progress each day.  Parker works on filling in his log to turn in points for a prize from his “brain bag”.  We filled a bag withcool sensory toys, active games, and brain puzzles that he is dying to play with, so he asks us everyday to fill his log in.  His “pons” class goes on for 8 weeks, and then we take another 8 week class to develop his “midbrain”.  We’ll keep you posted as to how it goes, but so far we have noticed he is using his legs now when he creeps on his tummy, which he did not do at the beginning of the class.

Our biggest news….Parker has potty trained himself!  Parker announced mid month that he did not need his diapers anymore.  He said he was ready to wear big boy underwear.  Wow!  We explained that he would now need to tell us or his teachers when he needed to go to the bathroom and practiced how he would do that.  We picked him up from school the next day with a bag full of wet clothes (3 accidents, 1 success) but that didn’t dissuade him.  That night while we were buying new underwear and extra pants at Target, he announced it was time and….success!  He was so proud.  The next day he had more successes at school and left the bathroom announcing to his whole class he did it!    They were so excited for him.  The week was spent telling everyone what underwear he had on for the day!  What fun!

At the end of the month we went to Mammoth for our friend Jacob’s 8th Birthday.  Parker had a blast playing with  all of his friends in the snow.  He couldn’t wait to snowboard.  We convinced him that it is cooler to be able to ski and snowboard, so he alternated.  Though, we think he likes snowboarding more.  We practiced balancing on his board without holding on to anything and he could do it!  So, we took him to the Discovery Chair which is not too steep.  Kevin would face Parker and instruct him to point where he wanted to go, holding on to his waist at first.  Then he would hold onto the shoulder of his jacket and eventually would let go all together.  Parker actually went 5-10 yards on his own, before he would grab hold of Kevin.  He has it, he just needs to gain some confidence.  We were so proud, but more importantly…he was proud of himself!  As a reward we had a Twix bar and rode to the top in the Gondola.  He spotted the half pipe his buddy Juddy competed in the day before and declared he wanted to ride in it!

January, 2008

Our first week with Anat was filled with anticipation.  We were scheduled to see Anat Baniel for our initial consult in the evening.  One of her practitioners, Dr. Neil Sharp, was observing and monitored the video camera as well.   Anat welcomed us warmly and talked to Parker gently.  Of course, Parker was his normal exuberant self and stole the show immediately.  Anat calmly laid him down and began slowly moving his body, very gently.  Parker sensed the importance of the moment and quieted himself.  While Anatworked on his legs, feet, back and neck, she spoke with us about her method and how her life had led her to having this amazing understanding of brain injuries.  We shared what we had been through over the previous year.  She explained that she thought Botox made the wrong connections while the muscles were not able to work and that as it wore off it caused confusion.  Anatagreed withus that the gait trainer was creating the wrong connections withwalking – that we don’t walk with our shoulders and arms.  She recommended soft soled shoes, not stiff, hard AFO’s, so the feet would feel the ground.  Our old style of physical therapy just stretched the muscles.  It did not work on the brain to relax the spasticity to enable full use of the muscles, and that overtime over stretching not only hurts, but could cause tears and further problems.  During this time, she was gently moving Parker.  She showed us that Parker had a tendency to throw his head back when getting into the sitting position, instead of leaning into the movement.  It was obvious that as long as he did that he would not be able to get up on his own.  By the end of the session he was learning how to lean into the movement.  At times, during his session, we saw the “learning switch” turn on in his eyes.  He would get this distant look and his eyes would move slightly back and forth.  At the end of the lesson, she stood Parker up.  It was amazing, one side of his body was bent – bent arm, bent knee.  The other side (the side she worked on), was long, lengthened and relaxed – straight arm, straight leg.  We later joked that she was a witch doctor.  We had never seen anything like this before.  We were sent home, with an explanation that Parker would most likely be really hungry, thirsty and tired.  She was right on all accounts. 

Our next lesson was withJoseph.  He had been working with Anat for a while, and we could tell Parker was in good hands.  He seemed to have the same gentle movement approach as Anat, as if he was an extension of her.  He had seen Parker’s first lesson on video and was ready to continue the work that she had started.  After Parker’s second lesson we were sent home to have lunch at Nana and Grandpa’s and relax before coming back for our next lesson that afternoon.  They booked our 45 minute lessons with a four hour break in between.  On our return we met Maralee.  Maralee reminded us instantly of Parker’s NeeNee, very warm and personable.  We noticed instantly that Maralee had a slightly different approach to Anat’s method.  Maralee is a chiropractor and highly trained Anat Baniel practitioner.  Her expertise is invaluable.  We hadn’t realized in the past year that Parker’s spasticity was in many parts of his body.  We had always focused on his feet and legs as that is what our therapists and Orthohad shown us.  With these lessons we saw that Parker’s back was not weak from under use, it was tight from spasticity.  Maraleewas able to release it with gently motions, and we saw Parker’s back arch for the first time.  It was truly remarkable.  Maralee would stuff Parker’s socks into his shirt for him to grab – in the front at first, then in the back.  By the end of the lesson he had figured out how to grab them out.  We had never seen him put his hand behind his shoulders.

The rest of the week we alternated lessons with Joseph and Maralee and had one more lesson with Anat.  Each lesson we sat quietly observingeverything they did.  We were told not to show our enthusiasm too much, that what Parker was learningto do was normal progression in movement and that he didn’t need us to cheer him on.  He knew when he did something new and would learn it and use it again better without the outside distractions.  We would sit on our hands watching, elbowing each otherand giving each other the eye, when we spotted something new.  Back at Nana’s house we would stand behind him at times in disbelief as we would watch him move differently – Arching his back while crawling, climbing the stairs.  His feet actually started to develop arches.  His feet used to look like solid bricks, but now they were able to soften and flex.

By the end of the week, Parker was “cooked”, as they say.  His brain was done learning for a while and now it was time to absorb his new found tricks and build on them before our next week of lessons in a month.  We took Parker straight to Mammoth for a long weekend in the snow with friends.  We were all in need of some time to take in what we had learned.  That first night Parker went to bed and began grabbing different parts of his body, showing us what he could do now.  He was lying on his back with his knees bent and reaching down with his hands, grabbing his feet one at a time- which he had never done before.  He then reached behind his neck and touched his back.  Next he patted his butt.  We were amazed.  You could see the delight in his face.  In the middle of the night he woke up and screamed “my feet, my feet”.  When we got to him, he just said “I can feel my feet” and went back to sleep calmly.  We were in utter disbelief.  He had found his feet…. 

February, 2008

The four weeks between lessons felt like an eternity.  We tried to see a local practitioner, but it was not the same.  We decided to save our money for Anat and her staff and to do our own movement lessons at home with what we had learned and watched in videos that we had purchased.  Our house became a great play center – rock climbing wall, trapeze bar, climbing structure, basketball hoops, etc.  We would chase after each other crawling or rolling on our tummies on skateboards.  Anything to encourage fun and mobility. 

At our next lessons we met with Joseph and Cheryl.  Cheryl has her own practice in Santa Cruz and comes up to San Rafael once a month.  She has a wonderful way with Parker and did some new things with him that we hadn’t seen before.  She worked with Parker’s legs, making a distinction between each leg movement.  Parker’s toes seemed to loosen up more as well as his hips.  On our drive home from the week, we noticed Parker was actually bending one leg and putting his foot on the inner thigh of his opposite leg.  A first, he usually sat with straight legs in his car seat.   When he would get uncomfortable, after  a long time sitting, I would have to hold one leg up, bent just for a change of position.  If I let go, it would go straight again, but not anymore.

March, 2008

Our March lessons were with Joseph, Maralee and Anat.  We were getting used to the schedule now.  Wake up, have breakfast, go to a lesson, come home for lunch and play time/relax time, go to a lesson, come home for dinner, short movie and some books.  Parker was usually so wiped out, he would barely stay awake for dinner, let alone the books. 

Maralee noticed Parker’s startle reflex had not been fully integrated yet.  She explained some of the reflexes to us that infants integrate into their system.  Parker has always had a sensitive back.  We could never touch his back without him jumping/flinching.  He would giggle insesintly when we touched his back, especially near the top.  He hated anyone touching his neck.  Maralee worked with this, and by the end of the week, his response to touch had changed dramatically.  He still had a sensitive neck, but his back was way more tolerant to our touch.   

Parker learned how to relax his toes on this trip as well.  Not all the time, but more often he would soften his tight toe grip.  It was harder for him to do this while he was using his hands.  We would still need to work on differentiation between his arms and his legs.  Maralee worked with his fingers and we saw that his thumbs would stick out more now.  He was also better at showing he was three with his fingers.  We joked that they made him grow every time we came.  His neck was no longer low into his shoulders, it was now extended. 

A week after our lesson, we went on a family cruise for Parker’s NeeNee’sBirthday.  Parker climbed and crawled all over the miniature golf course.  With more differentiation between his legs.  He would tackle the massive stair case whenever he got a chance.  When he grabbed for items, his hand shudder was less apparent. 

April, 2008

We had four weeks off this time and were anxious to get back to our lessons.  Parker’s toes were not as relaxed as they had been and his hands shuddered more when he grabbed for things.  They told us that regression was normal.  That the brain was still stuck in its old habits and with more lessons, it would break the habit.  The brain would learn the “new” way is easier and would accept that as the right way.  After the first day of lessons, Parker was already more relaxed in his movements, with more separation.  He tackled Nana and Grandpa’s stairs this week with more gusto.  Telling us to not watch him, he wanted to do it all by himself. 

Working with Anat

We bought him an inflatable jumpy to play on in the yard.  It has two tunnels, a climbing mound and slides.  He tried the climbingmound, but couldn’t manage it on his own.  It took a soft pressure to make it not collapse that he couldn’t manage yet.  He preferred to take the “short cut” and go around it.  He would climb in and out of the tunnels with gusto and would try to do somersaults out of them.  On the drive home, Parker now switches legs regularly and stopped complainingof his legs aching.

When we returned home, he started doing all sorts of new tricks.  One morning I walked into the office and he was sitting on top of one of our swivel chairs.  Iguessrolling chairs are no longer an obstacle.  He later exclaimed “watch this Mommy” and began walking tall on his knees for three steps.  When he came down he caught himself on his hands with his arms extended (just like he had been learning in lessons).  Then he said “let’s crawl as slow as we can down the hall”.  He seemed to be making up his own lessons.  We took him kite flying one day and he kept asking to roll down the hill.  He proceeded to roll down it, across it and even up it!  In the evening during a snack break I walked in the room and caught him going from the “W” sitting position to having one foot in front of him with his foot flat on the ground. Another first.

New Tricks

May, 2008

Our May lessons were the week after Parker’s 4th Birthday.  He told everyone about his Pirate Party and driving the Sea Doo.  He was getting really good at steering the Sea Doo on his own.  We had lessons with Joseph, Neil and Anat.  Neil showed Parker how to interlace his fingers and his toes.  Anat worked on Parker’s hips and placing his foot flat on the ground while holding onto a stool.  By the end of the week Parker was able to climb the mound on his jumpy using the steps.  He kept saying he was going to take the “long cut” instead of the “short cut” as before.  We took Parker to the Farmer’s Market and he climbed the tall jumpy ladder to take the slide with no help.  He had the ability to use his hips with his leg bent and push down hard, but not too hard.  We were amazed!  Back at Nana’s house the stairs were tackled even more easily.  We couldn’t wait to see what else he would figure out.

Playing in his jumpy

Anat told us about a surgeon in New Jersey that she thought would help Parker.  She explained that her therapy was working, but that Parker still had extreme spasticity in his gastrox and if we wanted full extension of his legs and flat feet, he would need a lengthening procedure.  Anat does not regularly recommend surgery, but Dr. Nuzzo is the only surgeon in America that does this procedure with the least amount of invasiveness.  She had seen his work and was impressed with not only his work, but his plan for recovery.  She recommended we check out his website and send him a video of Parker.  The website looked promising and we printed out the information to share with our family.  Thankfully, Joseph helped us with a therapy video to show Dr. Nuzzo Parker’s range of motion.  We went home to San Diego to order Parker’s medical records and xraysto put with the video to send to New Jersey. 

June, 2008

With gas prices soaring, we decided to get a Prius for our monthly commutes.  It was great to get 45 mpg instead of our usual 12mpg.  We needed the extra money to pay for our therapy.  We got the word that insurance would definitely not help with our lesson costs or Parker’s possible surgery.  We had seen such remarkableresults with his lessons, that we could not imagine stopping.

Now that the weather was warm, we were able to use Nana and Grandpa’s pool in between lessons.  Parker had been asking to swim since January!  He immediately dove in and wanted to play.  At this point Parker could grab things from the bottom of the pool and swim to the top, expecting us to pick him up.  He was not able to rescue himself.  He was happy just bobbing up and down with a big grin, but not swimming to the side to hold on.  He could float on his back for a long time and roll onto his tummy.  On our fourth day of lessons, we were invited to swim at Nana’s friend’s pool with her grandchildren.  Parker immediately dove in off the side, put his head down and swam one arm at a time, slowly to Kevin.  He was officially swimming!  He then saw the diving board and proceeded to dive off and swim to the side.  Over and over again.   We couldn’t believe he finally figured out how to slow himself down and glide through the water.  We went to lessons the next day proudly telling our story.  His practitioners were so excited!  This was a prime example of the results we see from his therapy.  Skills that were not available only a day ago, are now easily accomplished.

When we arrived back in San Diego, there was a letter waiting for us from Dr. Nuzzo.  He had watched Parker’s video and reviewed his records.  He believed Parker would be a great candidate for Sub Percutaneous Myofascial Lengthening (SPML).  He explained that teeny incisions in Parker’s gastrox and hamstrings and putting alcohol blocks in his hip adductors would help Parker release his spasticity and eventually walk with little to no support. 

July, 2008

July means lots of water time.  Parker’s cousin, Kanan, was staying with us.  We spent our days sailing, surfing and playing in the sand.  During the evening we worked on a tree house in our back yard.  Kanan and Parker with a bit of help from Mom (TT to Kanan) built multi-level decks in the rubber tree with a rope drawbridge, slide, rope ladder, ladder, and rock climbing wall.  Of course we hung a hammock chair in the tree as well.  We spent many an hour climbing up to the different levels and even ate dinner up in the tree.  During the day, while Kanan was at sailing camp, Parker would paddle around on his surfboard in the bay.  He had great balance and could now paddle with each arm smoothly and actually get to where he wanted to go.  Of course his favorite thing was getting pushed and popping onto his knees to surf (with his arms fully extended).  In the evenings we would all go sailing together.  Parker was getting really good at supporting himself when the boat heeled over.  We would race in our club’s Thursday Night Thing (TnT’s) and did very well considering we had 4 people in a two person boat (Capri 14).  The boys were getting quite a collection of trophies.  They were beginning to think you always got a trophy when you raced!

Getting towed behind the sailboat - his idea!

At our next lessons, everyone was excited that we were scheduled for surgery in August.  We came up with a plan to have lessons the week before surgery and immediately after Parker’s surgery.  Anat wanted Parker to develop the correct connections as soon as possible.  We spoke to a few more parents who had taken their children for surgery with Dr. Nuzzo to get tips for the surgery and recovery.  Everyone was happy that they had gone to see Dr. Nuzzo.  Which put our minds at ease.  We were nervous about puttingParker under Anesthesia and travelling all the way across country to see a doctor we hadn’t yet met.  Hearing everyone’s good experiences really helped us.

Upon our return we took Parke to Sea World.  Parker climbed the large net to the play structure for his first time.  He actually climbed it himself without needing us to place his feet.  What an accomplishment.  Of course, half way up he exclaimed “what was I thinking?”, but he still persevered and made it all the way to the top.

August, 2008

August was here before we knew it.  Time to get ready for surgery.  We packed our bags and headed to Marin County in our RV.  Parker had a great week of lessons with lots of swimming in Nana and Grandpa’s pool in between our appointments.  Parker began to wiggle his toes this week!  Wow.  After a nice relaxing weekend, we packed our bags and headed to the airport.  We flew into JFK in New York and were quickly overcharged for our taxi drive to Summit New Jersey.  Oh well, at least we were on our way.   Thankfully we were awake when we got to town, because our driver had a hard time spotting the large Grand Summit Hotel right in front of him (read sarcasm).  We were greeted warmly by the staff of the hotel and shown to our comfortable room.  The hotel was beautiful and we quickly got situated so we could watch the Olympics (we were addicted). 

First thing the next morning, we grabbed a shuttle to Overlook Hospital to meet Dr. Nuzzoand have our Pre-Op appointment.  The hospital was huge, looked up to date, and clean – phew!  The waiting room had a great play center for Parker and Dr. Nuzzo’s staff were very friendly.  When Parker met Dr. Nuzzo, he asked him if he surfed, and to our surprise, he told us he used to surf the big waves withthe sharks!  Parker immediately knew he was with the right doctor that would help him be able to stand on his board.  We asked a bunch of questions and Dr. Nuzzo had all the answers.   He explained that they would be putting casts on Parker’s feet after the procedure to keep his feet in the correct position during healing.  The casts would look like regular, plaster casts, but would be made out of rubber so they would give as he stood on them and walked.  During the recovery, Parker was to move as much as possible and stand and walk on a variety of surfaces.  We just needed to avoid sand and water – that was going to be the hard part!  He gave us the rubber casting material to bring to surgery the next day, it wasn’t a material they kept in the operating room.

We spent the afternoon exploring the town of Summit.  We were referred to the best local eateries by a police man that walked the streets and had a great meal.  The shops were fun to browse and of course we spent a lot of time in the toy shops.  Parker picked out a red dragon to go with his knight play set and a few books as well.  On our return to the hotel, we met a wonderful family from Spain who had travelled all the way over to see Dr. Nuzzo as well.  Their 13 year old daughter was going to have the same procedure as Parker.  We exchanged our information as best we could with our language barrier and quickly bonded.  We  headed out for an early dinner, but Parker fell asleep in his stroller before we even sat down.   The sleep was needed since we had a 6 am wake up call for his surgery.

Tuesday morning came early.  Parker wasn’t allowed to eat due to the anesthesia, so we loaded Parker into the shuttle convincing him he would get a good lunch when the surgery was over.  The staff at the hospital were great.  They did their best to cajole Parker into getting his blood pressure, temperature and oxygen levels.  We played games and told stories to keep him preoccupied.  He wasn’t too thrilled about putting the hospital gown on, but he obliged when his Daddy put one on.  All the doctors and nurses on the hall kept poking their heads in to see who the cute voice belonged to.  They were all so great at making Parker feel important.  Daddy got to go in with him for the anesthesia and then they ushered him out to join me in the waiting room during the IV and surgery.  We talked with our Spanish friends in the waiting room while they waited there turn to go in to surgery.  An hour and a half later, Dr. Nuzzo called and said all went well.  The nurses said that as soon as Parker wakes up we would be allowed to join him in recovery.  This was the scary part.  When we went in, Parker was waking up from the anesthesia and pain killers.  His feet were in casts, his legs were in immobilizers and he had an IV still in his hand.  He woke up completely confused, upset and mad that he was in leg immobilizers.  He kept saying “this is not how it is supposed to be.”  “Take these off of me.”  He was screaming and crying.  We got to pick him up and put him in his Daddy’s lap on a lounger.  That didn’t seam to ease him.  The nurses had to put morphine in his IV to calm him down.  Then his oxygen level started dropping.  They gave us a tube with oxygen coming out to put in front of his face.  Thankfully his oxygen levels increased and the morphine kicked in.  He spent the next half hour playing with the oxygen tube, calling it a volcano.  The nurse went over the discharge paperwork with me while we waited.  We had all the doctors notes and prescriptions for pain killers, muscle relaxants, and AFO’s.  We had strict orders to get him moving as soon as possible and to resume all PT.  While Parker was in good hands, I had the prescriptions filled.  When I returned they sent us to the discharge area to see if Parker would relax enough for them to discharge him.  He was in such a different place in his head.  He didn’t understand anything that was going on.  It was like we lost our “all knowing” Parker.  He was a different child.  I pulled the nurses aside where Parker couldn’t see me and asked if this was normal.  They assured me that it was the status quo.  That Parker was going to be just fine.  That we would be happy with the results soon.  They told me that they had seen the results of Dr. Nuzzo’swork and that this short term pain and confusion would be worthit.  The nurses were great withParker and tried to get him to smile, so they could send us back to our hotel.  We were finally sent on our way, with Parker stiff legged and mad.  We hopped on our shuttle and went back to our home away from home.  Now the true test, how to make him comfortable.  We spent most of the afternoon and evening holding him ovethe AC unit to cool down or lying down on the bed withhim on top of us.  Kevin did most of the work, since Parker was so big for me to carry or hold for that long.  Unfortunately the pain killers were in liquid form and he kept spitting them out -they tasted horribly.  I ran out to the drug store to get chewable tylenol to ease some of the pain.  On my return I met a family from Ireland whose child had had the same procedure and they told me that tomorrow would be a better day.  We tried to bribe Parker withroom service and cartoons, but nothing seemed to comfort him.  It was a long day.  Finally around 11pm, our little Parker was back.  He started talking to us, instead of crying.  I ordered more room service and he ate little bites of cookies and sipped Sprite.  Our heavy hearts were lifted.  He didn’t want to sleep.  He kept saying he couldn’t with the knee immobilizers on, that they were monsters.  How awful!  We comforted him him by telling him the doctor would take them off in the morning.  He finally fell asleep for a few hours after midnight.     

Post-Op, Hotel Room

 The next morning we took Parker to the hotel dining room for breakfast before our post-op appointment.  Parker did great sitting there with his casts and knee immobilizers on eating his pancakes and sausage.  Our shuttle driver was an old friend by now and was happy to see Parker smiling again as he took us back to the hospital.  As soon as Parker saw Dr. Nuzzo, he asked him to take off his knee immobilizers.  We were afraid that Parker was going to be unhappy when he realized the casts were staying on, but to our surprise he wasn’t.  Dr. Nuzzo took off his immobilizers and then stood Parker up on his casts – his legs were straight!  To our surprise the incisions were not even noticeable.  He had tiny bruises at the sites, but not cuts, no stitches.  We were sent on our way with strict instructions to move as much as possible.  We were to put the knee immobilizers on at night for sleeping until Parker lost the tendency to curl up during sleep.  We also needed to use them for long sitting periods for the next month.  Parker was to have his casts cut off at home in 4 weeks and then fitted for AFO’s without ankle straps.  They were to be used as reminders. 

As we were packing for the airport, Parker crawled off the bed and tried standing.  His legs were still weak, so it was not easy.  We were so excited to see him try.  We took him out for a celebratory lunch.  At lunch we noticed that he was coloring differently then before the surgery.  He was now coloring inside the lines and with small strokes.  Wow!  We left that afternoon for the airport, happy that Parker wasn’t going to have to fly with his knee immobilizers on.  This time we hired a driver to drive us to the airport.  He was fantastic and pointed out all the sites on the way.  Parker finally got some sleep.  That night we tried to put the immobilizers back on after he fell asleep, as the doctor had suggested.  Parker woke up screaming at us and bit me, but we think he was still asleep because he fell right back to sleep after the knee immobilizers were on.  The next day we sat him down and explained that he could either wear them during the day or at night.  That we thought he might want to pick night time so he could move around easier during the day without them.  He agreed with us and from then on didn’t have any more problems putting them on at bedtime.  The next morning he drew a picture for his Nana.  Usually his pictures were big scribbles, but this one was small circles with stars/small scribbles in the center.  We were amazed at the difference.  Anat had mentioned that the surgery would cause other differences, but we didn’t know what to expect.  This was remarkable.  We took the before and after drawings to show Anat that day. 

The next day Parker was invited to be a special guest at one of Anat’s trainings.  She performed his lesson in front of all of her students.  Parker was so excited to be the center of attention.  He kept asking about the cameras and wanted to see himself on the big screen TVs.  She worked mostly on his back, shoulders and neck, avoiding his feet while they were still recovering.  At Cheryl’s lessons Parker started to have work done with his toes and feet again, he didn’t seem to mind her touching them and rolling them on her roller.  Parker was starting to get more daring and trying to stand up on his casts on soft surfaces.  We went home for a week of work with plans to return in a week for more lessons and Parker’s Grandpa’s 80th Birthday.

September, 2008

Back for another week of lessons.  We were excited to see what they would do with Parker now that hew was used to his casts and moving freely about.  He was still weak in his legs, but mostly he was unsure, or scared that he would fall.  He needed to overcome his nervousness and use what he was learning.  We had a great week with Maralee, Joseph and Anat.   Maralee loosened up Parker’s hips and taught him how to make a bridge.  He was so excited that we could drive things underneath his back while he lifted it up.  A new trick! 

In between appointments that week he was cruising around our RV and climbed up on the armrest of the couch to reach the shade pull cord.  The next thing we saw, he was standing up and pulling it down and up.  Fully extending, on a mission.

Parker's casts - Proudly sitting on armrest

Standing to close shade - Wow!

At Nana’s house he begged us to go swimming.  So, we put rubber gloves on his casts, bags and duct tape hoping the water wouldn’t get in.  They still got wet, but he was so happy to be swimming again.  We just laid him out in the sun to dry them out afterwards and all was well!  They needed a cleaning anyways.  They were starting to stink! 

 When we returned to San Diego, Parker only had a week or so more with the casts on.  They were starting to get itchy and he had figured out how to stick a spoon down them.  The look of  relief on his face was priceless.  We had Jeff, at Bluebird Orhthotics take off the casts and make his AFO molds.  We were nervous to see if his feet would be flat when they were removed, but to our relief they were.  Jeff even said that he saw most of the children in San Diego that had surgeries and that Parker’s feet looked great.  He was really impressed, they were among the best he had ever seen.  Just the thing we wanted to hear!

At the end of the month, Kevin, Parker and I competed in Capri Nationals.  Parker was the youngest competitor by 12 years!  The other racers said it was great to hear us singing as we sailed the course.   Some of them even joined in with the ABC’s as we passed them.  We were very proud to get third place out of twenty boats that weekend.  What a great first National Regatta for Parker.  Hopefully the first of many!

Sailing Capri Nationals - 3rd Place!

October, 2008

It is fall now, and that means desert camping and motorcycle riding.  Parker loves to go camping in the desert.  We explore the sites – hidden streams, unusual topography, wildlife, mountain tops, and canyons.  This month we went to Dove Springs and climbed Robber’s Roost, where the stagecoach robbers would spy the stagecoaches crossing the valley and plan their ambush.  Parker had a great time hiding in the caves and rock outcrops with his friends.  Back at camp Parker rode his friend’s 50 dirt bike and a quad.  He loved riding on the 50 with his dad and he did great steering the quad – it looks like it is time to get him his own 50 (with training wheels of course).  We also launched rockets and flew kites.  We had a great trip. 

Hanging out on Robber's Roost - Dove Springs

We went straight to San Rafael from camping.  Parker told everyone about his motorcycle riding.  In lessons, Joseph worked on getting Parker to stand tall without throwing his head back and keeping himself straight and tall.  Parker did somersaults and rolling, grabbing his knees.  Maralee loosened his back up more and had him doing the “wheelbarrow”.  Neil played a game with Parker peeking under his arm while he was on all fours.  He then had Parker walking all around his table.  He showed Parker how to cross step and he picked that trick up on the first try.  Fantastic!  Lou played withParker on the rollers and had him moving like an animal.  Parker had a great time at every lesson and by the end of the week was all worn out.    While we were there, I had my first lesson with Neil.  All the carrying of Parker had taken its toll on Mom’s back!  I guess it was time to focus on me.  It was great to see what it felt like to have a lesson and not just watch them.  I had a hard time just letting go and not doing the movements for Neil, but in time I figured it out.  He moved me very gently with small movements, yet in the evening I felt as if I had had a chiropractor session.  My bones felt like they were moving into different positions.  I felt like a new person! 

Lesson with Joseph

Neck work

Grabbing toys for Maralee

walking the table with Dr. Neil

When we returned to San Diego, we took Parker to the playground.  He was eager to ride his bike.  When he was 3, Parker won an Ambyke from Greenbucs in Ohio.  It is an tricycle, where you make it go with both your hands and your legs.  This was the first time he was truly able to get it to work on his own without us pushing him slightly.  Check out his video – www.youtube.com/movie?v=900MuR_XEhA.  He was so funny stopping to say hi to  everyone he passed by.  Our little PR guy!

Parker likes to go to work with us after school.  So, we load up his Plasma Car in the car and drive to Seaport Village together.  We always go to  Wind Song first – to play the instruments and wind chimes.  Then it is off to Swings and Things – to swing on the tire swings, hammock chairs, and hammocks and to play the drums.  Our last stop is his favorite – Kite Flite- there he plays with the planes, throwing toys and balls.  This month he figured out how to make the tire swings move on his own – back and forth – and make them stop.  His balance is really progressing.  Check out this video to see him swing – www.youtube.com/watch?v=bOYpJmNFroM. 

November, 2008

We took Parker to Disneyland to see the Halloween decorations.  Parker’s best friend Connor and his sister Camille joined us for the day with Auntie Julia and Uncle David.  The boys favorite ride was the rocket ride.  After the ride Parker told us he didn’t want to get back in the stroller, he wanted to walk.  He proceeded to push his stroller and then grabbed our hands to continue on his way.  Our friends were thrilled to see his progress! 

The following weekend we went to the desert to try out Parker’s new motorcycle (a used 50 we found on Craig’s List).  He had all the gear – helmet, goggles, neck guard, elbow, shoulder, and knee pads, chest protector, gloves and boots.  I’m not sure how he wore all that gear in the heat, but he was determined to ride.  We put training wheels on his bike, made him show us how to make the bike stop, and off he went down the trail with us (and the dogs) running next to him.  He did great.  Only one crash into a bush, when he was distracted looking at his bike instead of the trail.  He got right back up and continued riding – phew! 

Parker wanted to walk at Disneyland!

Stoked to be riding his motorcycle (with training wheels)

Back at lessons, Parker worked more on standing tall on his flat feet and transitioning his weight from one foot to another.   You could still see apprehension in his face when he was up tall trying to balance.  I kept thinking it must be hard to know what falling is like when you are learning to walk – not like a baby who is closer to the ground and doesn’t yet have fear.  But, of course, he is such a trooper and will work through this.  All of his practitioners are really great at telling him that they have him and taking each step slowly so he can feel his own balance. 

December, 2008

Working with Anat

                                            Lesson with Maralee

Parker loves working with Maralee.  Check out a video of one of their lessons at www.youtube.com/watch?v=Cj-3lkODXPo.  

By the end of the week, Parker was getting more confident standing up and taking steps with help.  Anat and Maraleethought it was time for Parker to start using a forward facing walker.  A forward facing walker would help Parker gain the confidence and form to start walking on his own.  Unlike a gait trainer (reverse walker) a forward facing walker would not develop bad habits of leaning on the walker and using his shoulders to lift himself up to walk.  We called around and found a local mobility store that had a pediatric walker in their warehouse.  Since they were not normally prescribed anymore for children, they had a used one that they were willing to sell us.  It wasn’t the perfect walker, since it had small wheels that did not swivel, but it would work well on smooth surfaces and it would work until we could get a better one.  We brought it to our last appointment with Anat for her to see.  Anat brought out all of the walkers they had and Parker proceeded to try each one and walk up and down the hallways over and over again.  He was so excited to try them all.   Anat taught Parker how to get up using one foot at a time instead of pulling up onto both feet. 

After Anat saw Parker use his new walker, she sent us off to get Parker new shoes.  We used to look for shoes that were durable on the toes for all the crawling he did, but now that he was up and walking he needed shoes that had soft soles.  That way he would feel the ground when he walked.  We went straight to the Puma store.  Parker picked out a new pair of red shoes and immediately wanted to wear them.  There was a DJ in the store spinning some records.  Parker heard the music and had to dance.  Of course we took a video.  He had this great booty shake!  You can check out his video at www.youtube.com/watch?v=ZeZ-_MHnqjE.  Back at school he showed up with his new walker and was so excited because he got to use the elevator.  All of his friends came over to check out his walker.  All he could say was “check out my new shoes!”  Too funny.

At home we tried to get a new walker with big wheels that swiveled for better mobility.  They ranged in price from $300 – $900.  The delay in getting insurance to cover another walker before Parker grew out of his current reverse walker, was inconceivable.  And for the mean time, all of our funds were tied up in Parker’s therapy.  So, we pulled out his old reverse walker to see if we could convert it into a forward facing walker.  With a little ingenuity, Kevin came up with a solution.  The wheels couldn’t move, but the handles could.  Voila, we had a new walker.  Parker was stoked to have his old walker converted into a new one.  He uses it all over the house, at school and down at Seaport Village where our shops are located.  Kevin took his smaller walker with the small wheels and added a tray to the top.  Now he uses it in his classroom to take the trays of “work” to his table.  What empowerment!

We took Parker to Disneyland to check out the holiday decorations.  This was his second time going in a few months and the differences were noticeable.  This time he would get out of his stroller in line and stand, holding the railings.  We went on “It’s a Small World” several times, each time he stood up in the boat the whole time.

Parker stood up during entire ride of "It's a Small World"

Back at home Parker is loving to cook with his Mom.  His NeeNeebought him a “learning tower” so he could stand at the same height as the kitchen counter.  When it is time to help in the kitchen, he uses his walker on his own accord to get into the kitchen.  He climbs onto his tower and helps measure and mix all the ingredients.  When the creation goes into the oven, he climbs down goes to the oven, stands up at the door and looks through the window.  He feels so much more comfortable moving around the kitchen withmore things in his reach.  He now asks to help with every meal. 

One of Parker’s Christmas presents was a remote control helicopter.  He was so excited and immediately wanted to fly it.  He hasn’t flown one for more than 6 months.  We were amazed at his control.   He isn’t just bumping it into the ceiling anymore.  He can actually fly it around and land it smoothly.  He has so much control now.

Parker’s mobility was delayed, as is expected for preemies.  He learned how to push up, and used this trick for a few months.  His next trick was rolling.  Then he could get himself into a sitting position.  It took him a few months, but he learned to go from sitting to his tummy by leaning forward. When he finally started crawling, he did the “military crawl” – pulling with his arms and dragging his legs behind him.  He did this very well and kept this as his mode of transportation for 6 months.  Then one day, he figured out how to get up on his knees.  Actual crawling.  The delight in his eyes.  He would try crawling up stairs, but got frustrated mostly.  When he was 2 he figured out how to crawl up onto things.  We would let him crawl on tables just to encourage the new mobility.  A few months later, he started pulling himself up in his crib or at the coffee table.  He would pull himself up with his upper body, rolling from the front of his feet onto his toes.  If we weren’t careful, his toes would be rubbed raw.  By the time he was 2 1/2, he had developed a definite tippy toe walk when he stood.  He wasn’t able to make any steps on his own.  This is when the pediatrician finally tested his mobility.  At previous appointments, Parker would spend most of the appointment talking to the doctor in full sentences.  The doctor was not concerned about his progression, believing the mobility would catch up soon.  When he finally tested Parker, he did a reflex test and told us he had ”hypertonia” and said we would want to go to a specialist.  He referred us to a Neurologist – Dr. Mower, an Orthopaedic - Dr. Chambers, and a Physical Therapist - Stephanie,  all out of Children’s Hospital.  We weren’t able to get an appointment with the Neurologist for 6 months.   We scheduled an appointment with our Ortho at the spastic center at Children’s Hospital in two weeks and had a physical therapy appointment evaluation in a week.  At our therapist evaluation, she measured Parker’s flexibility and confirmed the hypertonia and mentioned spastic diplagia.  At our Ortho appointment, we met Dr. Chambers and his nurse Caroline.  Dr. Chambers did a quick assessment of Parker and told us he had Cerebral Palsy in the form of Spastic Diplagia.  He explained that it was brain damage that it is caused by a lack of oxygen to the brain, most likely during the birthing process.  He also told us that Cerebral Palsy comes in many forms and that Parker’s was minor.  His son also had Cerebral Palsy, but was more seriously affected.  We found out that his nurse, also had a daughter with CP.  She explained that her daughter was now skiing on her own and that with the right therapy ours could be to.  I shed one tear uncertain of the road that Parker was now on.  Then my positive attitude kicked in and I realized that Parker could be the poster child for CP.  His enthusiasm for life and wisdom would pull him through this obstacle.  Look out world!

We were sent on our way with websites to educate ourselves and a follow up apointment in 6 months.  We were to go to our physical therapist at Children’s Hospital two times a week for an hour.  Parker loved our therapist, Stephanie, and we could tell she took a special liking to Parker.  How could you not, with his enthusiasm for life?  Parker loved getting to play with Stephanie’s toys.  He didn’t always like what he had to do there – getting up and down from a sitting position, stretching his legs, reaching to strengthen his back.  Thankfully, Stephanie was creative and we were there to encourage him. They also recommended swimming, and were pleased that we were already taking Parker to swim class two times a week.  He loved the freedom in the water and we were excited that we had given him such a great head start in his therapy before even knowing his diagnosis.

Parker loves the water

During this time we were also researching schools for Parker.  He was getting too smart for us.  We were interested in Montessori schools since they focus on the individual child and encourage a lifelong love of learning.  We set up six appointments with Montessori schools and a few other private schools in San Diego.  Our first appointment was with Beth Montessori.  We met the administrators and were sent in to sit in small chairs in one of the primary classrooms (2 1/2 – 6 yr olds) to observe the children at work.  We were struck by how calm the classroom environment was.  Each child was working separately on their own project – from cutting oranges (yes, with knives), juicing them and pouring them into a glass for drinking to poking continents out of paper to make their own world map.  The “guides” (that’s what they call the teachers), would show them how to do new work and then would observe them doing it on their own.  Each child’s chair and desk was matched to their own size (so they all varied by a few inches).  The classroom was perfectly organized into five different types of work (practical life skills, sensorial, mathematics, language arts and enrichment).  We loved how clean and clutter free the environment was.  The child would put away their work when finished before starting on something new.  Each class also had a pet to take care of (turtle, dog, or birds).  As we walked out, we saw the play structure, play house, and green house in the center courtyard,  for outside time.  We then met with the administrators for our interview.  We learned that the children were taught in both Spanish and English (one guide would speak only Spanish and the other only English).  Since the school was on Temple grounds their lunches were to be kosher and they would celebrate Shabbat on Fridays.  For Shabbat the children wear white shirts, bring in a flower for the classroom, and bring in Tzedakah (money for donation) to put in a collection for a charity.  They would bake Challah, sing songs with the Rabi, and join in their own ceremony.  They would also learn Hebrew.  The children that attended this school were from all types of backgrounds – English, Chinese, Russian, Hebrew, and Spanish.  We were thrilled that Parker would be learning in an environment to accept all people and their beliefs.  At the end of our appointment we asked one last question, “what about children with special needs?”.  Their response,  “all of our children have special needs, it is our job to guide each child individually depending on their needs”.  The perfect answer.  We made an appointment to introduce them to Parker and cancelled all of our other school tours.  We had found the best place, no need to see any others.  At Parker’s interview, they fought over who would get to have him in their class.  The director,Lena, and Shira won.  He started Montessori the following week, 4 days a week – 1/2 day.  On the first day of school he brought a plant for the classroom.  When we dropped him off we would stay and watch him through the window.  He got along beautifully with the other children.  When we picked him up, we would stay an extra 1/2 hour to watch him play on the playground.  He loved the climbing structure and slide.  They would bring “Tomasa” la tortuga (his classe’s turtle) out during this time and all the children would gather round to watch him.    We loved seeing Parker grow in his new environment.

 

Parker’s 1st day at Montessori

Parker’s Desk

Peek a Boo on the playground

Here I go

Parker loves the water

swimming at Lake Havasu

walking with wheels at PT

wearing knee immobilizers at PT

1st time using reverse walker

Parker riding his Ambyke that he won

At Parker’s neurologist appointment, Dr. Mower was impressed with Parker’s abilities.  He wanted us to get an MRI to confirm the diagnosis.  Parker went under anesthesia for the quick procedure and was smiling soon after.  At our follow up appointment, Dr. Mower showed us where Parker’s brain was damaged.  A very small portion of his brain.  It was damaged only in the part that controls his lower extremities.  He recommended we continue with physical therapy and that we might want to consider Botox in the future.  We learned that Botox was actually created for patients with spasticity to relieve the tightness and develop the right “connections” to create better use of the muscles.  We went home and did more research on Botox. 

By the end of the summer, with Stephanie’s recommendation, Parker was fitted with AFO’s (ankle and foot orthotics) by Bluebird Orthotics and Prosthetics.  Our technician, Jeff, got along with Parker well, as they were both skiers.  Jeff put casts on both of Parker’s feet to use as the mold.  While they were drying Parker told Jeff, “I’m getting magic boots because I have Cerebral Palsy.  That means I have brain damage”.  You should have seen the look on Jeff’s face.  Of course we were used to the look, because Parker said this to lots of people that first year.  When the casts were dry, Jeff cut them off and sent us on our way.  At our follow up appointment we picked up Parker’s “magic boots” and to Parker’s surprise, Jeff had decorated them with trucks, planes and helicopters.  Parker thought they looked really cool.  Parker got to go to the store and pick out new shoes to fit them.   He wore his “magic boots” during the day, they weren’t extremely comfortable when crawling and made his feet swing out to the sides.

walking with wheels at PT

At our next Physical Therapist appointment, Stephanie had Mobility Solutions come in and measure Parker for a gait trainer (a reverse walker).  Parker started practicing using one at therapy.  The first time he was up he walked down the hall and around the entire building.  People cheered from their offices as he rounded every corner (everyone knew Parker’s voice and laugh).  Within a few weeks his own walker showed up and we covered it with fun stickers and an Orca horn.  He took his walker to school everyday, excited that he had something the other kids couldn’t use.  At therapy he would practice walking without out it pulling Stephanie down the hall on a rolling chair with a hoola hoop as the lead.  When he made it to the “big boy” gym he would be rewarded with a basketball session and then practice walking again on a treadmill.  Within a month we noticed that Parker was now running with his walker.  But at close inspection, what he was really doing was running quickly on his toes an then picking his feet up to coast.  Smart kid, but not what was intended with the walker.  He developed the idea that walking uses your upper body - shoulders and arms – and not your whole body working together.  We were concerned about this and mentioned it to Stephanie, so she kept working on his walking without it. 

1st time using reverse walker

 

That October, Parker went in for his first Botox injections with Dr. Chambers, his Ortho.  Dr. Chambers is the head of his department at Children’s Hospital and was an expert in Botox.  The injections were $1000 each ($6000 total), thankfully insurance covered this.  He gave Parker three injections in each leg, right where his gastrox are located (above his knee).  To desensitize the area he sprayed a cooling spray on Parker’s legs.  Parker handled the shots very well,  all he said was that it was “coooold”.  Within two days we noticed his legs were longer and straighter.  The Botox was supposed to last 6 weeks, but we noticed a decline in 4 weeks.  During this time we were supposed to stretch his legs more.  Stephanie, our PT, suggested we get knee immobilizers to put on during bed time to stretch his legs even more.  We felt horrible making him wear them, when all he wanted to do was sleep curled up on his side. 

wearing knee immobilizers at PT

At Montessori that week, one of Parker’s classmate’s parents gave us a book to read.  One of her daughters has CP, as well, and she wanted to share with us a program that she had found.  We were excited to have someone that knew what we were going through and how hard it was to get alternative therapy information from our doctors.  The book was from the Institutes for the Achievement of Human Potential (www.iahp.org), titled “What to do about your brain injured child”.  We dove into the book and read it out loud to each other any chance we could get.  It was fascinating.  It was exactly what we had been talking about.  Why treat Parker’s symptoms and not the brain damage itself?  We kept thinking there must be someway to retrain the brain, or make new connections like they did with stroke patients.  We looked for the “glitches” in Parker’s development to see where we could help him.  When we mentioned this to Parker’s therapists and doctors, they just shrugged it off.  Obviously they had didn’t want to discredit what they had studied and were practicing.  So, I ordered more books and charted everything we needed to do to make the connections on our own.  The only problem was they suggested you give up all outside therapy and schooling and work with your child every hour of the day.  This was not conducive to our jobs and we felt that Parker’s school was not a hinderence nor was his swimming.  We were set back by this, but tried to integrate a program with what we were already doing.

Parker riding his Ambyke that he won

Parker’s schedule was quite busy.  He had therapy with Stephanie at Children’s Hospital two times a week.  He had therapy with Rachel, at San Diego City Schools, one day a week.  He had Occupational Therapy with Brie, at SD City Schools one time a month.  And of course, swimming at Noonan swim school two days a week.   Between school and therapy we would fit in the new methods we were reading about.  Once Parker was in bed, we would read or research more.  Then, that December, our neighbor walked across the street with a post-it in her hand.  She had just spoken with an old college friend who had a child with CP that lived in Australia.  Her friend had found a new place to take her child, Johan, that produced great results.  The note said www.anatbanielmethod.com, San Rafael, CA.  “San Rafael” I asked?  And she replied that that is where they are located.  Would you believe that they were located in my home town?  We were shocked to hear this and immediately went upstairs and online.  We spent the next few hours watching videos of children receive “lessons” from Anat and her staff.  With tears in our eyes we knew this was the place we had been looking for.  We immediately emailed them about Parker and said if we knew they could see us, we would drive up this instant.  Of course, by this time it was 9pm at night.  We anxiously waited for a response.  Their site said the wait for a consult could be 6 months.  The next day we had a reply that mentioned there had been a cancellation, and if we could make it, they could see us the first week in January.  We replied immediately that we would be there.  We had our friends and family check out the site and watch the videos.  They were amazed by what they saw confirmed our beliefs that this was the place for us.

We spent that month telling our therapists about this place that we had found.  Sharing the website with them.  No one seemed very interested in what we were telling them.  We kept hoping they would research it when they found some free time, but again we believe they didn’t want to go against what they had been trained to do.

Kevin and I looked at having a preemie as a blessing.  We got to have our baby for an extra 10 weeks!  When Parker came home, he was still not due for another 5 weeks.  We spent those next 5 weeks watching him sleep and grow.  He spent most of this time at home, in our arms or his bassinet.  When we finally decided to venture out, we were selective as to where.  We didn’t want to expose him to germs.  That didn’t stop us from introducing him to our passions.  As soon as he fit his life jacket, which we tried on him everyday, we made arrangements to get him on the water.  The week before he was due, we took him out on our Uncle Jed and Aunt Nancy’s sailboat (J-120).  He seemed to love the motion of the water and the breeze on his face.  That same week we took him out for his first motor boat  ride.  He slept through most of this experience.  On his due date, we took him to the beach and gave him his first dunking in the ocean (cradled in his Dad’s arms).  He didn’t like the cold water much, but loved the warm shower afterwards. 

Since he was a preemie, we were told he would progress on his own schedule.  His pediatricians told us he would catch up to most kids his age by the time he was 3.   We had nurses coming by every month for the first 6 months, to weigh Parker and check on his progress.  We went to an ophthalmologist for eye tests to monitor his vision.  His vision was perfect and was set for follow up appointments every 6 months. 

We taught Parker sign language at the encouragement of friends and had a great time with it.  Parker had the signs for more, milk, eat, tired, change and juice down very well.  By the time he was one, he was already using words.  His first words were:  Mama, ma (more), fui (food), Hi, no, Bye, eye.  By eighteen months his vocabulary had grown.  He loved to use his words – ming (swimming), Nigh-Nigh (goodnight), ball, nose, Nee Nee, Nana, Dada, bike, truck, sock.  He also made wonderful sounds – oh boy oh boy oh boy, man oh man oh man, eieio, mmmm(engine sounds) and his animal sounds – oofffff (woof), baa-baa, mooo, quack.  What fun we had listening to him wake up talking to himself.  Parker also had great hand dexterity at an early age.  He could pick up tiny objects and place them with care wherever he wanted.  He also seemed to understand us very well.  We took him to work with us daily from 5 weeks (his due date) until he started Montessori at 2 1/2 yrs. old.  We believe his vocabulary and understanding was so good, because he listened to adult conversation all the time. 

Parker was a natural in the water.  He loved his baths and we took him in the pool with us whenever possible.  We started him in swim school (Murray Callen) when he was 5 months old (3 months from his due date).  He loved it.  We took turns joining him in the pool with our instructor, Karen, until at age 1, she kicked us out.  I think she wanted him all to herself.  Parker loved to go underwater and grab toys from the bottom of the pool.  When we took him in the pool at Lake Havasu he would have no problem going down to the bottom of the 10ft. pool with us and then swimming back to the top by himself.  He had this funny head shake when he swam, accompanied by a giant smile. 

Parker was a great traveller.  We would take him on frequent long car trips to Lake Havasu (5 hours) for some fun in the sun and on the water.  He loved to float in his lifejacket and play with his friend, “sister Elise”, cousin Kanan and other friends.  Parker took his first long distance airplane flight to England to visit his great Nana in Wales when he was 4 months old.  He had a wonderful time meeting his great Aunt and Uncle, and all of his cousins.  He did marvelously on the 10 hour flight both ways.  He would also endure the 7 1/2 hour drive out to Mammoth without a complaint.  He loved going down the little hills on his sled and finishing the day in the hot tub.  We got him his first set of skis when he was two.  He couldn’t stand on his own yet, but the boots helped him stand.  We would walk him around the snow in his gear, to get him used to the snow.   When he was 11 months old we took him to Hawaii with our close friends.  He had such a great time watching his older friends play.  He took a great liking to playing in the sand that trip.   

We took Parker on his first camping trip when he was 5 months old.  A lot of our friends had trailers and RV’s.  So we rented an RV for our trip.  We were hooked by the first mile into our drive.  We joined our friends in the desert at Ocotillo Wells.  Parker instantly loved listening to the motorcycles start up in the morning.  We had such a great time, we decided to get our own RV and start camping regularly.  Every other weekend we would load up the RV and head out.  We loved exploring the desert together, having campfires and hanging out with our friends.  We explored the high desert - Dove Springs, Lucerne Valley, Copper City, and Calico.  We frequented the Anza Borrego Desert – Ocotillo Wells and Superstition.  And when the snow was dumping we hit Mammoth for our snowboarding adventures.  Sometimes we would even do back to back trips from the snow to the desert.  What fun!  In San Diego, we would even use our RV for day trips to the bay or beach.  The summer after Parker turned 2 we loaded up the RV for a 10 day trip beach camping with our friends in Baja, Mexico.  We went surf camping in Punta Cabras.  We camped on the cliffs overlooking the beach.  It was a great get away.  We would load Parker in the backpack and take him on long walks on the deserted beach.  He would play for hours with his friend, Hamilton, on the beach while we would take turns surfing with our friends.  We searched for sea shells, built sand castles, and did arts and crafts during the day and had wonderful campfires at night.

“I know God won’t give me anything I can’t handle.  I just wish he didn’t trust me so much.”  – Mother Teresa

Our little Parker started his life in the NICU (neo natal intensive unit).  His first nurse was Somer.  She was wonderful.  Always positive and nurturing.  When we first saw Parker he was in an open isolette.  That way they could reach him easily if needed.  His left lung was a little weak, and they didn’t want him to overexert himself, so they inti-bated him.  When he grabbed at the tube 6 hours later, they felt he was strong enough to not need it anymore.  So, they inserted a nasal cannula.  He had lots of monitors and wires hooked up.  One was attached to a gold sticky heart – his heart monitor.  He also had an O2 monitor attached to his big toe.  A feeding tube was hooked to his belly button – for nutrients.  He wore a tiny blood pressure cuff on his ankle.  We were allowed to hold his hand the first day and gently touch him (being careful to not overstimulate him). 

While Parker was in good hands, we were sent to get some rest in our new room.  It was a few floors up from our old room.  My new room was called the “Tipper Suite”, named after Tipper Gore who had stayed there.  As soon as I arrived to my new room, a nurse came in with an electric pump.  It was 3 am and time to start pumping.  It was painful at first, but at least I was able to sit upright again.  I pumped every 2-3 hours to stimulate my milk production.  While I figured out how to pump, Kevin transferred 3 cart fulls of our belongings from our old “hotel room” to our new one.  One of my favorite nurses, Maija, came to visit at 4 am.  At 5 am I started walking for the first time in 8 weeks.  I made it part way down the hall.  Oh the pain!  At that point exhaustion took over and I slept from 6-8am. 

That Tuesday, we had lots of visitors.  Mom Ronnie (NeeNee) visited first thing.  Tears of joy would be the best description of her introduction to her newest grandson.  Christi Wilson arrived shortly there after to meet Parker.  Dr. Saffer stopped in to check on me and congratulate us, bummed I didn’t wait an extra day so he could deliver Parker.  Sandee, one of my prenatal nurses, came to visit bearing a wonderful aloha baby blanket.  We got to visit Parker in bed “61″ on the high side of the NICUthat afternoon.  In the evening I walked the entire hall – what a triumph!  Auntie Lisa came to visit that evening with Mom.  When we went in for our night visit at 9pm, I held Parker for the first time.  We left two hours later when we realized we were dozing together in the chair. 

By Wednesday, I needed pain killers to walk.  I was determined not to let the pain slow my mobility, and persevered.  At our morning visit, Kevin held Parker for the first time.  Kangaroo hold – skin to skin.  Parker found his chest hair and held on.  That afternoon they put Parker on a C Pap to help inflate his left lung.  His lung was perfect by Thursday.  For the next three days he alternated between the C Pap and Nasal Cannula.  We got to change his diaper for the first time today.  It was so small, the size of a matchbook.  Kevin was taught how to clean his eyes and take his temperature.  Lisa visited that evening and got to hold Parker for her first time.  That evening they put me on antibiotics, my incision had turned red.

My pumping was discouraging, but on Thursday, Iwas finally able to produce colostrum, “liquid gold”.  They put 1cc in a syringe and fed him through his belly button IV.   He started a nutrient rich formula today as well.  When we returned to our room, they removed my staples and signed my discharge papers.  I was finally going home – 8 weeks after I had arrived.  We stopped by the NICU, to tell Parker and the nurses we would be back as soon as we moved our belongings home.  When we walked by Parker’s bed, he picked up his head to turn it towards us.  So strong.  As soon as we arrived home, I started pumping – and would you believe, my milk came in!  Finally!  We returned to the hospital that evening with fresh milk in hand. 

On Friday, Parker was moved to bed 58, a closed isolette.  His new neighbors had been born at week 24 and 26.  They were 1 lb. 3 oz. when born.  They were so tiny.  Parker looked so big compared to them.  Now we knew what the nurses meant, when they said he was so big.  He started on breast milktoday.  We fed him with a bottle attached to his IV, raised high above his bead.  I got to kangaroo hold him while NeeNee visited. 

At 3pm on Saturday, Parker started using the Nasal Canula only – 20% room air.  Nana and Grandpa arrived from Northern California to meet Parker for their first time.  My Dad’s hands looked so large next to Parker.  They were overjoyed to finally be with us.  They stayed until Monday.  As they left, Uncle Kirk arrived.  He got to watch Parker get his first sponge bath and have his Nasal Cannula removed for good. 

On Thursday (Parker is 10 days old), they removed Parker’s belly button IV and inserted a feeding tube through his nose into his stomach.  Breast milk only – yeah!

On Parker’s 11th day, they told us we could dress him in clothes.  Up until now, he had been wearing a white shirt and diaper, so it would be easy to reach all of his monitoring devices.  He was now being monitored with a heart, lung and O2 monitor only.  We didn’t have any clothes small enough, but, thankfully, Christi had found some preemie clothes  for us.  He wore an adorable navy blue onesie – that was actually baggy on him.  The new outfit did wonders, that afternoon his ”step-down” orders were given.  We were going to move to the less intensive care NICU.

On day 12, we moved to Intermediate Care.  The procedures were the same.  We would enter the waiting room, pick up the phone and inform the nurses that we were here to visit Parker.  They would beep us in to the wash room.  We would scrub from our elbows to our fingertips and then wait for the door to be opened (no germs allowed).  Parker got a new set of nurses that were again wonderful.  This side was a bit noisier, with crying babies at times and beeping monitors.  Parker’s neighbors were now bigger, instead of smaller.  His special sign that Nurse Somer had made, followed him into his new home.  We read Parker “Green Eggs and Ham and 1 Fish, 2 Fish by Dr. Seuss.  He seemed to enjoy it.  We hung photos of us in his isolette and went home to rest. 

On day 13, Parker had gained back all the weight he initially lost.  Back to 3 lbs 10 oz.  We called him “little Houdini”, because he had figured out how to pull his feeding tube out of his nose.  On day 14 (2 weeks old) he passed his birth weight by 1 0z!  The next day the nurse fed Parker with a bottle for the first time.  He took 20cc from the bottle and then fell asleep.  We finished his feeding off with 10 more cc in the tube.  He gained another ounce. 

I would pump in the pumping room at the NICUwhenever we were there.  On day 15, I fed Parker with a bottle of fresh milk for my first time.  When he fell asleep, I continued to hold him as he finished eating via his tube.  They moved Parker from an isolette to a bassinet at 9pm.  To celebrate, he removed his feeding tube again.  This was the first time we saw his face without anything attached to it.  He was so beautiful.  NeeNee videoed him having kangaroo time with Daddy.  Parker showed off and pooped on his Daddy.  Today he weighed 3 lbs 14 oz.  We changed him into a new premie outfit that was sent by Julie Brown. 

On day 16, Parker breast fed for the first time!  The lactation consultant sat by my side to help him.  He did very well.  The next day, Daddy gave him a bottle for his first time.  Parker was now up to 4 lbs!  To support his new weight, he took an entire bottle on day 19.  Kim and Cameron visited today.  They took turns coming in with us, only three visitors were allowed at a time.  Parker now weighed 4 lbs 2 oz.

On day 20, we were taught how to give him a bath.  What fun.  Parker was able to breast feed two times today.  In the afternoon Julia and David visited.  More tears of joy!  When we were leaving, Nurse Marie gave us a handmade baby blanket for Parker.  It was so soft and hand made with love.

We were now on week four.  We had developed a routine visiting Parker throughout the day.  I was still pumping every 2-3 hours.  First thing in the morning we would visit Parker and read to him, feed him and see to his needs.  We would leave for lunch and return again that afternoon for more.  After dinner, we would go back again for a few more cuddles if he was awake, if not we would just watch him sleep.  Our family and friends planned a baby shower for us for the following weekend.  At night, we put together an album of photos to show everyone what our little miracle looked like.  Nana and Grandpa flew in for the party.  They couldn’t believe how big Parker was getting.  The party was great, it was fantastic getting to share our excitement with everyone. 

Week 5, and we were pros at the NICU.  We were not quite sure if we wanted to have the responsibility of monitors at home, and were quite happy to have the professionals caring for our little one.  At the end of the previous week, the neo-natologist informed us they were going to start testing him to see if he could come off the monitors.  The first time they tried, they determined he wasn’t quite ready.  The second time they tried, he was ready.  Parker’s discharge papers were signed for June 20.  5 weeks and 6 days after his birth date.  5 weeks before his due date. 

Parker was born on Mexico’s Mother’s Day and came home the day before Father’s Day.  What a wonderful gift!

Parker’s birth story doesn’t start like most.  You could say we took the long road to find our bundle of joy, but it was more like a roller coaster.  Kevin and I decided to start our family after two years of marriage (preceded by 6 years of dating).  It was the millennium and we were thrilled to find out we got pregnant on our first try.  Aware of the  possibility of miscarriage, we began our first trimester with caution and only told those closest to us.    The reminders of pregnancy – food aversions and morning sickness – were welcome, only adding to the excitement that soon we would be three.  Around week eight we went in for our first pre-natal visit.  The excitement of the day was dampened a little when the doctor confirmed that we were pregnant, but not on the same time line as we had calculated.  The size of our little one was a week smaller than we had predicted.  He printed a picture that looked like a kidney bean and sent us on our way with bags full of literature.

The next week was filled with excitement as my belly changed shape and my sickness continued.  We went to our next appointment, excited to see our baby.  As our doctor looked at the image on his screen, his expression changed.  Before we knew it, he was talking about “blighted ovums” and next times.  He assured us that it was probably just a fluke and that soon we would be meeting again.  We scheduled a D&C for the next week and headed home.  The rest of the day was spent curled up on the coach sobbing while Kevin called those closest to us to share our news.  We had our D&C at Mary Birch Women’s Hospital the following Monday.  The feeling of loss hit as soon as I woke up from the anesthesia.  Thankfully the kind nurses ushered Kevin in to comfort me.  We were told everything went well and we could try again in a few months.

Early the next fall, we were thrilled to find out we were pregnant again.  We made our appointment for our first viewing.  All looked well.  The food aversions were back and I secretly enjoyed the morning sickness, believing it was a sign that all was on track.  We kept the pregnancy a secret again, not wanting to jinx ourselves.  The next week we went to our annual Halloween celebration without anyone guessing and thought we were great secret keepers.  But, the next day I began to have cramping.  I spent most of the day in the bathroom and the following day on the couch in a stupor.  We went to the doctor first thing on Monday to see that same expression.  Another loss.  We had to schedule another D&C.  Our doctor comforted us by telling us he had two blighted ovums as well and that he now had two wonderful children.  We were determined to have a family and set our sights for the New Year and new beginnings.  The holidays were hard, watching friends get pregnant and holding newborns, but we had each other to comfort and knew that someday we would have our own family.

Early the next spring we were delighted to see that we were pregnant again (pregnancy #3).  This was it, we thought.  Lucky #3, three is a charm.  All the signs were back.  We scheduled our first apointment with anticipation.  At our appointment, the doctor looked surprised…twins!  Then upon further investigation, he told us one didn’t have a heart beat - a blighted ovum.  Thankfully, the second one looked strong.  We were going to have a child.  We were sent off with a photo and a lab form for our blood workup.  We were at a loss for already knowing we had lost a twin, but were thrilled to know one was going to make it.  At our next appointment, the doctor explained our hormone levels weren’t at the level he had expected.  During the sonogram, we never saw the monitor, just that same look on our doctor’s face.  We were scheduled for another D&C and referred to a Fertility Specialist – Dr. Arlene Morales. 

We made our appointment at Fertility Specialists as soon as we got home.  We were relieved to be going to see an expert.  No more guessing as to what was wrong.  Upon our first meeting, we were greeted with warm hugs from Dr. Morales.  She patiently sat with us, handing us tissues, and listened to our story.  She explained that most of her patients had fertility issues, not recurrent pregnancy loss.  She was pleased to hear I was so fertile, but was determined to find out what was ending our pregnancies.  We were sent off to take  hundreds of tests.  We tested my blood for a multitude of conditions.  I had dye injected in me to see the shape of my uterus and fallopian tubes.  Next, they filled my uterus with water and a balloon to inflate my uterus for a sonogram viewing of my uterus and ovaries.  We even had Kevin take genetic tests.  At our next appointment we learned that my fallopian tubes were clear, my ovaries were filled with a “pearl necklace” of eggs (most of her patients would die for that result) and that my problem was my uterus.  The tests showed that my uterus was tilted and shaped irregularly and that I had a small fibroid.  Dr. Morales recommended I have a laporoscopy and hysteroscopy.  During this procedure they would have a scope go in through my bellybutton to view the exterior of my uterus to make sure they wouldn’t tear my uterine wall while they enter my uterus through my cervix and clean the lining of my uterus.  We were going back to Mary Birch.  I was getting to be a regular there. 

The procedure went very well.  My uterine walls had been stuck together (like a piece of gum stuck between two pieces of paper and then pulled apart).  They cut all the adhesions and smoothed my walls.  The fibroid was not big enough to cause a problem, so it was left.  Now my uterus would hold a baby to term.  Hallelujah!  The recovery wasn’t so bad, just cramping.  I did end up with an infection in my belly button from the laporoscopy.  Thankfully, my OB was able to drain it (I still remember the pain) and give me antibiotics to clear it. 

During this time, I had read an article on acupuncture and fertility.  I had seen an acupuncturist in the past for asthma and had remembered she was a fertility specialist.  After doing some research, I found the same acupuncturist.  Donna now had her own practice – The Acupuncture Center of La Jolla.  At my first appointment, I learned that she had problems getting pregnant due to endometriosis.  Through acupuncture, she was able to have a healthy baby boy.  I explained my story and the results of my specialist and Donna was excited to help me.  She would put needles in certain points that would help my fertility and ease my stress.  Every appointment ended with a massage.  Donna would share tips on eating certain foods that would help and prescribed herbal tinctures and vitamins.  During my appointments I focused on my uterus as a “palace”, clean and ready for a new arrival.  I enjoyed every visit and scheduled weekly appointments.

Not long after, I was pregnant again (#4).  This was it.  Our “palace” was ready and so were we.  We scheduled our first sonogram with our new doctor, Dr. Saffer.  Dr. Saffer had a lovely South African accent and a great personality.  We were looking forward to a fresh start.  With all of our previous pregnancies, we were well educated on our cycle and knew the conception date perfectly.  To our dismay, the sonogram didn’t show the same date.  Again our little peanut was not as big as expected.  We were sent off for blood tests without a picture.  How could this be?  We were ready, my uterus was ready….  The results showed my hormones were again not on track.  We had to have another D&C.   

Back at Dr. Morales’ office she explained that only 2% of women have RPL.  Only 2% have an irregular uterus.  And only 2% have a luteal phase defect (insufficient hormone response during the first trimester).  We knew I was unique, but this was crazy.  To increase my hormone levels, she wanted me to use progesterone suppositories for the first trimester.  At this point we were even more determined to have a baby. 

We wanted to wait a few months before we got pregnant again.  We focused on our businesses and continued with the acupuncture.  To our surprise, we found out we were pregnant while on a business trip to New York.  We started the progesterone as soon as we returned to San Diego, hoping it wasn’t too late.  Dr. Morales sent us for blood tests that week.  My levels weren’t high enough.  We had lost another pregnancy (#5). 

At our next appointment with Dr. Morales, she brought out a bottle of liquid progesterone, needles and fake silicone butt cheeks.  With my hormone levels not responding correctly, we would need to inject the progesterone.  I have to admit, it was a funny site seeing Kevin stab the fake butt cheeks.  Kevin is my superhero for taking on all of my issues in stride.  We were sent home with our progesterone and needles and ready to help our next little one grow.

By summer we were excited to find we were pregnant with #6.  Every night I would try to relax and think happy thoughts as Kevin would quickly stab my butt to inject the progesterone.  The needles were not small, due to progesterone being so thick, so my pajamas would end up polka dotted with blood by the end of the week.  Oh well, it was worth it.  We were going to finally have our baby.  We had our ultrasound and all looked great.   The heartbeat was so strong.  We were given the go ahead to head to Hawaii for a vacation.  Perfect. 

On our vacation we diligently injected the progesterone.  A few days into our trip, though, something went wrong.  I began spotting.   We tried to convince ourselves that it was nothing.  As soon as we returned to San Diego we called Dr. Morales.  She was not available, so we were asked if we could go to her colleague in North County.  We hopped in the car to see the inevitable.  Upon our arrival, Dr. Lori Arnold greeted us and quickly ushered us in for an ultrasound.  Our suspicions were confirmed.  We had to get another D&C.  Before we left, Dr. Arnold said she would like us to see her after our procedure.  She had some ideas for us.

A week later we went in to see Dr. Arnold.  To our surprise we learned that she was an expert in the field of RPL.  In fact, RPL was her main focus before she came to Fertility Specialists.  Finally, an expert in our condition.  We learned that a lot of her patients that needed progesterone also needed estrogen.  So, we began a new program to ensure a successful pregnancy.  First we had a look at my uterus to make sure the adhesions were still gone. Thankfully they were. I was put on a round of antibiotics to ensure no bacteria was present. Then I was told that as soon as I got pregnant to call her. I would need to take baby aspirin daily. Start the progesterone injections again and have my blood tested to check my hormone levels. 

That fall we were pregnant (#7).  I was taking aspirin and progesterone daily.  When my lab results came back, we called Dr. Arnold.  My estrogen levels were too low.  So, we were prescribed estrogen patches.  I wore two patches on my abdomen at all times.  The only problem I ran into was my insurance wasn’t used to this use for estrogen and wouldn’t prescribe me as many as I needed at a time (I was using 2 every few days, instead of 1 every month).  Thankfully, the pharmacist took pity on me, as I cried horribly at the counter – hormones!  My next lab results were perfect.  We went to see Dr. Morales for weekly ultrasounds.  What fun, to hear the heart beat and see our baby moving around so often.  Then, around week 9, while we were out for a holiday dinner, the flood gates opened.  I thought for sure I had lost him.  I went straight to bed and tried to relax until the next morning.  To our surprise,  at the ultrasound, we saw that our little peanut was perfect.  They explained I had just passed a clot, probably due to the baby aspirin.  To be safe, they put me on bed rest for a week until our next appointment.  It was a tough week, trying to get ready for Christmas in bed, but I would do anything to have a safe pregnancy.  The next week, we graduated from our specialist’s office with the news that we were going to have a boy!  And no more bed rest! 

At Dr. Saffer’s office they congratulated me on making it to the next level.  I would now come in every two weeks for checkups.  We were doing great.  We set our appointment for our high intensity ultrasound for week 20.  How exciting!  At this ultrasound we were going to confirm the sex and check out all of our little one’s vital organs.  Everything looked great.  Except, the technician said my cervix was really short.  We had a conference with Dr. Saffer and he suggested we have another look in two weeks.  He wanted to see if my cervix was shrinking.  We waited patiently the next two weeks, believing that all would be well.  At our next appointment, the technician called her supervisor in, my cervix was now paper thin.  The picture on the screen showed “Parker” tap dancing on my  cervix.  Dangerously close to breaking through.  I suddenly became a VIP.  Off to Mary Birch they sent me.

At Mary Birch, we met a wonderful doctor (Dr. Red Shoes), who explained that I would need an emergency circlage to close up my cervix and keep “Parker” in.  He was going to try to thread a band through the wall of my cervix, while I was contracting, to cinch my cervix up tight at the longest point.   My cervix went form 1mm to 4mm after he was done.  Phew!  Now for hospital bed rest.  Only 18 more weeks to go!

They didn’t have a room for me on the preterm labor hall, so they put us in a labor and delivery room.  Unfortunately, that meant a really uncomfortable bed (not intended for long term use).  Thankfully they provided me with an inflatable egg crate mattress topper.  I had to sleep in a reverse trendelemberg position (feet up, head down) to ensure no pressure on my cervix.  I got used to it after a few days.  Every few hours the nurses would come in to hook me up to monitors.  We would listen to Parker’s heart beat and monitor my contractions.  Kevin was wonderful and would bring me food from home so I wouldn’t have to endure hospital food all the time.  Finally, after a week, a semi private room opened up on the preterm labor hall.  Semi private means your share a bathroom and entry door, but there is a curtain between our rooms for privacy.  The worst part was, my roommate cried all the time.   She was shocked to be in the hospital at week 36 with complications.  I, on the other hand, was excited that I had constant care.  I would do anything to keep Parker in for as long as possible.  I was already up to week 23, only 17 weeks to go!

We met with a neo natal doctor from the NICU that week.  He was a wonderful man, that explained what would happen if we went into labor early.  He gave us  the breakdown of weeks and development.  He said every day longer Parker was in me, that would mean two days less in the NICU.  We learned that Parker would have a much higher chance of a healthy life, if we could make it to week 28.  We told him no problem, that we would see him week 40!  Just to be sure, he wanted me to have two steroid shots to decrease the likelihood of brain hemorrhaging and increase his kidney and lung development. 

I had three doctors rotating in to see me – Dr. Saffer, Dr. Marcrander, and Dr. Goodwin.  They were all wonderful and nice.  Always putting me at ease and telling me I was doing a great job resting.  My nurses were also fantastic.  I think having a positive attitude ensured that I got the best nurses.  Of course, I always shared the goodies I was sent and to help things even further, Kevin would pick up an extra desert at times to put a smile on their faces.  By the end of the second week, we were upgraded to a private room!  Ahh privacy, it is the little things in life that make the biggest differences.  

Our new room was small, especially when we had visitors, but we made the best of it.  Poor Kevin was sleeping on a recliner that laid flat, so I searched the internet and found a single air mattress to put on top for added comfort.  Kevin brought our pillows and blankets from home, which made a big difference.  We hung a tropical calendar on the wall and x’ed out every day we were there.  It really helped to see what we had accomplished so far.  Thank goodness I was able to have my laptop for internet access and DVD playing.  I think I saw the entire season of Sex and the City in one day!  I probably should have spaced it out a little, but I was hooked.  By the end of week 24, we found out that we were on the waiting list for the “princess suite”.  One of our wonderful nurses explained that there was a large private room at the end of the hall that was reserved for patients who were in for the long haul.  This special room was twice the size of mine, had huge windows with a view of a mountain and sunrises, and a large bathroom.  Oh the glory!  My current room had a teeny window with a wonderful view of the parking garage.

To our amazement the “princess suite” opened up at the end of the week.  In a flurry, two nurses came in my room and said to hold on, they were going to roll me down the hall before someone else took the room!  It pays to be the happy patient!  What a fantastic room it was!  Kevin put all my cards on the wall for decoration, he even added a teeny baby aloha outfit to the wall for inspiration.  Our calendar went up right next to my bed, so I could x each day completed.  Kevin filled the closet with my pajamas and spread our potted plants out.  We were officially moved in to our home away from home.  Now we could easily set our sites on week 40!

We had a daily routine.  Kevin would wake up, kiss me goodbye and head out to feed our dogs and go to the office/stores.  I would order the best thing on the menu, raisin bran and banana (word to the wise - don’t ever try the hospital eggs).    Then, one of my lovely nurses would come in to take my blood pressure and set up my monitor.  My breakfast would arrive with my prenatal vitamins, stool softener and liquid iron.  After breakfast, I would slide down the bed, so my belly could be warmed by the sun streaming through our window.  I would put headphones on my belly, so Parker could listen to Baby Mozart or Vivaldi.  He seemed to enjoy it.  Next I would log in for my work emails and handle all customers (unless it was a complaint – I didn’t want the stress).  Every hour or so, I would switch sides, to ensure no sores.  Kevin would arrive for lunch with something yummy from the outside world.  He would bring me our stores Recap Sheets, so I could do all the account balancing and make the deposits.  Kevin would leave for home during my evening monitor sessions to feed our dogs and pick up dinner.  This is when I would usually work on a project – I would knit squares for a baby blanket, make crafty cards, try to register for baby items, or play games.  Kevin would return with a hot dinner and then we would hang out with the TV.  Right before bed time, we would get to listen to the baby heart beat one more time.  It was always so fun, having the nurse search my belly for his heartbeat (he loved to swim around, just like he does now).  Then off to sleep.  Every other day, I was allowed to take a shower sitting down.  Thankfully Kevin would help me.  Shaving and conditioner were the toughest part.  While I was in the bathroom, a nurse would change my sheets (fresh sheets were appreciated, since I ate in bed).  So I wouldn’t be upright for long, I would brush my wet hair back in bed.  On weekends we would have movie night.  Kevin would cruise down the hall to the vending machines and call me on his cell phone to give me my snack choices.  Then we would try to cuddle up in my single bed and watch a movie. 

I had a few wonderful friends that would visit me while I was laid up.  One of my favorite visits was from my dear friend Julie, who volunteered to make Parker’s bassinet skirt and bedding.  She didn’t want me to feel left out, so she wheeled in my sewing machine and I got to watch her make it.  While we did girl stuff, her husband took Kevin surfing.  We both appreciated that day.  Of course I cherished every moment my nephew Kanan came to visit.  He was only five then, so to sneak him into the hospital we had to say he was our son.  He would happily call me Mom and his Mom, auntie, when the nurses came in.  So funny!  He would come with gifts and cookies and would snuggle up next to my ever growing belly (I was gaining lots of weight, since I couldn’t exercise) while we watched cartoons together.  Sometimes we would play ball with inflatable doctor’s gloves.

I only had a few breakdowns.  The first one happened when maintenance found out I had opened my window.  They seemed to think an open window was a suicide risk.  Like a fat pregnant lady could fit through the window.  Unfortunately, I didn’t win that battle and the window was closed for me.  The second one happened when maintenance decided to move my  tear away calendar to a wall out of my sight.  I relished every day the nurses would come in to tear away yesterday’s date.  And now I couldn’t see it!  Thankfully, the nurses had them move it back in view.  Again, being the happy patient helps.  I had a few meltdowns over dinner.  I had to learn what was easy to eat in bed, on my side – no more California rolls!  Too messy!

I made it to week 28, when to my surprise, my doctor told me I could go home if I promised to stay on bed rest.  She ordered up my at home monitor and planned my discharge for the following Monday.  An hour later, while  Julie and David were having lunch with us, I felt a trickle.  Did my water break?  We called the nurses in, they took a sample, and yes, it was amniotic fluid.  We were going to have our baby today.  Julie and David hopped up, asking if they should get the camera, when my Doctor called and said no way.  She ordered up an IV and antibiotics and they whisked me off to remove my circlage (to avoid bacterial infection).  Apparently they were going to keep me on bed rest until I had contractions or a fever.  The longer that Parker was in me, the better.  My discharge was cancelled.  I had an intermittent “leak” every day.  Poor Kevin would wake up some nights to me asking for a change of clothes and new sheets.  But, again, we were determined.  Kevin’s Dad had a saying ”the only difference between an adventure and a catastrophe is your attitude.”  And we were positive we would have a family – we just weren’t sure when.

For the next two weeks I had an IV hooked up just in case.   One day we had a huge ultrasound machine come in to take a look at Parker’s orientation and the amount of fluid.  There was Parker, feet down!  Unfortunately, all of his swimming around had gotten him all tangled up.  His umbilical cord was wrapped twice around his neck.  Thankfully, since there wasn’t much fluid, he couldn’t twist himself up more.  So, the doctor ordered monitoring every two hours to be safe.  There went my full night sleep.  Oh well, it was worth it.

All the driving around caught up with Kevin Mother’s Day weekend and he was sent home with the flu.  Thankfully, Kevin’s Mom and sister, jumped into action.  We spent a wonderful Mother’s Day together in my  room.  They laugh now at how cold I had the AC running in my room.  I guess they always bundled up to visit me.  Which is funny considering I was always wearing a tank top!

Kevin was allowed to return that Monday.  We had a great day, back together.  That evening I had bad gas, but didn’t think much of it, so I sent Kevin home to feed the dogs.  Thankfully, he had made it a habit to always have his cell phone with him.  I mentioned my gas to the nurse (Sandee), who immediately thought she better hook the monitor up.  To our surprise it wasn’t gas, those pains were contractions!  Kevin drove quickly back to the hospital.  The contractions  progressed to 1 minute apart and were very painful.  At 10pm we were whisked down to the delivery room for an emergency C-section (Parker was footling Breech).  Dr. Goodwin met us there.  They worked quickly, setting me up with a spinal epidural.  Kevin got to stay by my side the whole time.  We couldn’t watch what was happening, but we could hear.  We were in a room with a window to the next room.  The NICU staff was on the other side of the window, waiting for Parker.  Parker was pulled out feet first, and he let out a cry.  Just what we wanted to hear!  He was quickly passed through the “drive-thru” window to Dr. Suri, our neonatologist and his staff.  Kevin was invited in to see him, while they closed me up with 14 staples.  We were then taken to recovery to await the news of how our little boy was doing.

The nurses came in and reported that Parker was doing very well for a 30 week baby.  He was 3 lbs  10 oz., 15 1/4″ long, and breathing on his own.  His umbilical cord had been wrapped around his neck twice and around one leg and one arm, but all his vitals were good.  As soon as my epidural wore off (when I could feel my legs), we would be allowed in the NICU to see him.  Kevin called the grandparents and other close family and friends to share our good news.  Two hours after delivery, they wheeled my hospital bed into the NICU.  I saw my little angel, Parker, for the first time!  What absolute joy!  He was beautiful.  We sat with him until 3am and then went to our new room for some rest. 

                                 Parker Philip Olenick – Born May 10, 2004, 10:32pm – 3 lbs 10 oz, 15 1/4″ long