31 Dec
2011

Posted in: art, juvenile art, whales, friends of sara, alternative
By Melissa

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Sara Update 55

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Sara Update 55

Blessings of the Season

August 2011

Happy Holidays All! I know this is a bit late but I thought you still might like reading about Sara’s progress this year.

We hope you will consider being one of Sara’s 1000 angels. To receive a tax write-off send your contribution to Friends of Sara PO Box 172 Collingswood, NJ 08108 and make the check payable to Collingswood Cares/Sara Fund. Every donation will be acknowledged by Collingswood Cares. There is also Papal at her website www.friendsofsara.com. If you have not heard from us let us know. We are very overwhelmed with her extensive care and many tasks are set aside for that less busy day but it never comes as the days seem to get busier beyond belief. If you are interested in volunteering to help with secretarial work, bookkeeping, website maintenance, or PR we would sure welcome it. Drop me a line at melisma@comcast.net.

You loving folks are the ones who are keeping our family functioning and Sara continually improving with all of her therapies. With full grateful hearts, we can never thank you enough for making our little girl’s future possible! See below for more good news…

Talking to the Pulmonary Doctor

She spent a weekend in the hospital the first of August. I said Sara, “Is there anything you want to tell the doctor?” She wrote, “I have cerebral palsy.” Then she added, “I have oxygen deprivation.” The doctor smiled and said, “Sara, do you want me to put your nasal cannula with the O2 back in your nose?” Yes…that is exactly what she was asking for. OMG is this kid smart! That was the biggest word she’s used so far. I don’t know how she figured the spelling out.

To Dream the Possible Dream

A week later I went to see one of my students in the summer camp Broadway Dreams show at the Kimmel Center. Someone sang the song “The Impossible Dream” acapella and I was very moved by the words. I resolved to sing it for Sara Ann. The next day, I pulled out an old music theater book and sang it. But when I did, she told me that she didn’t like it. “Why?” I asked very surprised. “Because I believe that dreams can come true, if you believe and have faith,” she wrote. “Mm, mm, mm, out of the mouth of babes,” my grandmother would have said.

Chrismation

Well if she was going to go to school I decided we needed to begin with her formal introduction to the Church and Sunday School. I wanted it to be a grand affair to impress upon her how important it was. Father Emmanuel suggested that she was the right age to be chrismated. She was very happy with this idea. I had a lovely flowery dress for her that she didn’t get to wear at Easter, but she wanted a white dress. Have you ever tried to find an all-white first communion dress at the end of the summer??…real hard, but after 5 stores, at 15 minutes before closing there on the clearance rack at Lord and Taylor’s was the most beautiful little white first communion dress right in her size, silk with white net…absolutely perfect and only $15! Wasn’t this Grace at work? The day came and she looked like a little princess. Dr. Isa made her a little head band of flowers. She and the Flamporis family joined us afterwards for coffee. I said “Sara, do you have anything you want to say to everyone?” She wrote, “I love you. Thank you.” Then she added, “It was beautiful and I am happy.”

Sara with Dad and Flamporis Family

Dress for Chrismation

Looking for a School

The next day we went to visit the Larc School. They have OT, PT, and speech therapists who will help me with her swallowing work, holding the pencil and getting her body functioning better. They have a music room, sensory room, cooking room, computer library and wonderful large open facility with playground. They even have an adaptive swing…something she has really missed since growing so large. It will be great to have a whole team of folks working with her and to meet other families with similar kids, to have a sense of community. We are breaking out of the bubble!!! I think Sara will really bloom in school as long as they challenge her academically. She is really smart, but being in such a dysfunctional body it’s hard for folks to realize how very smart she is. I just don’t want her to be in a place where they dumb everything down.

A Trip!

Where are the whales Dad?

Once we were certain she’d be going to school. Hugh said we’ve got to get her some new glasses right away. Dad was so nearsighted that he couldn’t see the board at 6 years old. He remembered how awful that was and was determined that we get the glasses for her from the start. We realized we’d better jump on it before the summer was over. Not to mention we couldn’t face the beginning of a new school year without having done something fun and summery!

The trip overall was great. It was wonderful to get out of Dodge and see all of our dear old friends. Our first stop was the eye doctor in Gilford, CN who showed us how Sara Ann can track with her eyes now. He had the puppet Lamb Chop (remember Sherry Lewis?) with little red gloves on, talk to her and boy did her eyes follow wherever that puppet went! Then he said she was seeing better and using her eyes better overall!! But, like her dad, her nearsightedness is increasing. So Dr. Padula is making her 2 pair with special prisms, one for near and another for far. My cousin Jan put us up in Connecticut for 2 days while we got our glasses fitted and started us out on our first of many clam dinners. I just love long talks with Jan because she knows everybody and everything about my family.

Gloucester and Rockport, Mass

Then we went on up to Gloucester, MA to visit Active Healing and watch whales. All the hotels were booked on Cape Ann, so after 2 hours on the phone, I booked a Red Roof Inn 30 miles away. However, when we got there they didn’t have any record of our reservation. As it looked more like “The Red Run Down Inn”, this turned out to be a great blessing in disguise. Expedia, who had royally screwed up, got us another reservation with a huge discount to make up for it, at the local Sheraton resort…a really beautiful and well run place. We were exhausted when we arrived. Sara had been having difficulty in the car as she was beginning a cold…which also made it a lot of work for me with all the constant suctioning . The whole trip was also nothing but work for Hugh as he chauffeured us everywhere, schlepped us and our 40 pieces of gear, in and out and stayed up late doing clean up and preparations for the next day with all Sara’s meds etc. That first night in Gloucester, poor exhausted Sara had a seizure in the car, on our way home from the famous Clam Shack drive through. So we took Sunday off, adding an extra day to the trip, cancelling a visit to our friends near Boston, and instead slept in…very wise decision. Later we went to Rockport and paid a visit to the apple strudel shop (ultra yum!) and the chocolate and taffy shop. (Hey we know how to live it up!) All the area shops had beautiful large pots of bright cheery flowers which Sara Ann could see enough to enjoy.

The next day, our dear friend Sarge with Active Healing was quite impressed with Sara’s overall growth and mental development. He showed us some things we could work on to get her body out of some baby reflex patterns it is still stuck in. And we reviewed how to pattern her to help her brain function better and her limbs start to work better. She lost her ability to crawl this year. We are hoping to reclaim it with the use of the Quadriciser. He also introduced her to a ride on a “sound wave” machine that jiggled her a lot and was supposed to be good for increasing muscle tone. We ended by showing him her art show and he was duly impressed. I said, “Sara Ann, do you have anything you want to tell Sarge?” She held the pen and wrote “I (drawing of a flower) you.” She utterly charmed him!

Sara Ann with Sarge Goodchild of Active Healing

We next visited Katharine Newhouse who owns an amazing home with huge picture windows that look over craggy rocks on the shore of Cape Ann and her daughter, Lainey. We shared a walk down their dirt road and heard all about Lainey’s recent adventures as a language student in St. Petersburg, Russia. Meanwhile, the mosquitoes made dinner of little Sara Ann’s arms. So we got her out of there by making haste to a local fabulous Mexican restaurant back in Gloucester. It was a welcome change from the clams, clams and more clams we’d been dining on the last 3 days. There was such a wave of grace carrying us on this tri p, the parking angels even provided us a spot right in front of the restaurant and just across from the frozen yogurt shop, even Hugh liked it! A purest, he will usually only entertain real ice cream.

Katharine Newhouse and Sara Ann taking a walk in Rockport

A Whaling we will gooo…

Our final day in Gloucester, we took the long awaited boat ride to see the whales which had been Sara’s default wish with the Make-a-Wish Foundation. Sara Ann was not having a good day. She was reacting to the mosquito bites with respiratory symptoms. She looked like she was about to seize for most of it and her O2 level was disturbingly low. Katharine, Lainey and I prayed over her, did Reiki and sang to her which helped revive her some. Hugh and I were pretty worried for most of the trip. How could we get back to land fast enough if she did seize etc…? Fortunately, we didn’t have to find out.

When “Mogal,” the name of our lone whale, showed up, I asked the boat captain permission to sing to the whale but it was not given. So, I sang softly under my breath anyway, trusting in the whale’s super hearing. Katharine and I prayed aloud that he would come to our side of the boat for Sara to see him…and guess what? He heard us! Sara kept closing her eyes so I wasn’t sure she’d even seen him. But when I asked her, she drew his beautiful tale and I knew she had….and that made all the trouble worth it to me. Riding 5 hours with the wind in our hair was freeing, clearing and somehow healing. Afterwards I knew I could face going home and jumping into a new school year.

Mogal the Whale!

Popover Chicken Dinner

Post seafaring, we drove to Dedham, MA to visit the Robinsons that night. They had given me vows in the religious order I’d joined so many years ago. Orthodox Christians now, they are known as Father James and Matushka Ellen. Their daughter, Sarah, had serious medical problems like ours for many years. Now she has 3 masters’ degrees and she is working on her forth in Divinity. Having suffered many of the same things we have as a family, they’ve been wonderful mentors and supporters these last 7 years. Ellen surprised us with a delicious popover chicken dinner! (I’ll share the recipe when she sends it!!) In the middle of the meal, Sara’s impending seizure arrived and they got to see Hugh and I jump to action. I think it reminded them of previous rough years of their own.

Sweet friends with even sweeter memories

Next day we drove on to New Bedford, MA to visit with Rev. Jack Haney who married us 20 years ago this coming Oct. 6th.. I sang him a hymn my student gave me that is sung to the tune of Danny Boy….Amazing Grace

Amazing grace shall always be my song of praise,

For it was grace that bought my liberty.

I do not know just why He came to love me so,

He looked beyond my fault and saw my need.

I shall forever lift mine eye to Calvary,

To view the Cross where Jesus died for me.

How marvelous the Grace that caught my falling soul,

He looked beyond my fault and saw my every need.

This hymn really touched me because I’m so aware of Grace carrying us…well definitely me…every day. I couldn’t survive without that Grace right now. No Way…It was the first time I’d sung in months….maybe a new start for me….I hope. After a hiatus for over 9 months, I am ready to sing again, Lord willing. It’s the first time I stopped singing since I was 14 years old…guess that really tells you what a dark period we’ve just passed through. After showing Jack, Sara’s art show, she wrote to him, “I (drawing of 4 roses) you.”

On to Grand Pop’s

We decided to try to push on that night to Grand Pop’s but couldn’t quite make it. After 4 hours driving in the rain, at midnight, Sara was having trouble breathing and we had to stop. Hugh pulled over in the first place he saw, which happened to be the parking lot of a Marriott. I didn’t think she could go any further even though Grand Pop was only an hour away. Luckily, the Marriot had 2 rooms left. So wiped out and vastly relieved we booked a room. Dad fell into bed spent from fighting the rain and I stayed up and did respiratory treatments and laundry. We saved all the usual clean-up and prep for the morning.

Recuperating with the sleep, early the next afternoon, we finally arrived at Grand Pop’s. Vonia, his dog, jumped into the car and started licking Sara all over the moment we opened the car door. Sara and the dog just fell in love all over again. Vonia is an Australian shepherd who came with Grand Pop when he took Sara and I to get Her HBOT treatments when she was only 2 months old. I watched Sara’s happy face as her tight fisted hands opened up flat to feel the dog’s fur. Grand Pop gave me a tour through his amazing magical garden that he planted 4 or 5 years back. He’s created a remarkable work of art on about a half-acre of land. There are living rooms of flower s and trees, shrubs, plants, statues, inviting chairs, meditation spots, and fairy corners. Every turn offers a new view and some hidden delight that suggests to continue traveling through the three dimensional living installation. The rooms of living color and arched beautiful form demand a silent attention. I went back again to walk the garden alone. The light had changed and I was aware at how the whole thing filled me with love of the beauty of nature and a feeling of devotion…a taste of heaven. If you know Hal (John) Robinson, Grand Pop to us, get him to take you for a walk in the garden

He served us a homemade feast of salmon and potatoes smashed with citrus and bacon, garlic spinach and homemade peach pie…YUM! Just as I was finishing my pie Sara Ann’s cold suddenly took a turn for the worse and we had to find the ER. Although new and well equipped, they weren’t much into pediatrics. Five hours after we arrived, they thankfully agreed that the best place to put us was in an ambulance bound for Children’s Hospital of Philadelphia. We left at 4 am for a rainy 3 hour trip to Philly. CHOP would be the perfect fortress to be in, during Hurricane Irene because of the wet roads and soon to be much more trouble. If the electricity were to go, the hospital had plenty of generators. Sometimes I think Sara Ann has this special angel that just takes care of the details. Hugh went back to Grand Pop’s to get some shut eye and followed us back with all the gear the next day. He wasn’t a moment too soon. Hugh spent the next day getting everything off the basement floor to prepare for Hurricane Irene.

Dad Schlepping it

During the worst of the storm Sara and I had to move to another room at CHOP to avoid the rain leaking through our ceiling. But the real excitement was back home where Hugh was vigilantly getting up every two hours to check on the basement. Good thing he did, because the sump pump turned itself off and within 2 hours it was flooded with 5 inches of water which began seeping into our hot water heater. He had to call the fire department to help him reconnect it. I’m so glad we hadn’t waited the storm out at Grand Pop’s. He’s such a good Daddy, minding the store! We still have to watch the basement carefully all week until the Delaware and Cooper Rivers recede. Sara is still working her way through this cold. We hope to be home in a couple of days and able to go to my nephew’s wedding next weekend.

From September on

More Sara-isms

One day, I was visibly worried. She wrote, “Mom you worry too much.” I nod and tell her I think she’s probably right. She continues, “You need to enjoy life more….You need to make flowers in your heart.”

The Tea Party

We’ve had this little tea set sitting around at the foot of Sara’s bed for years. I asked one day if she wanted to get rid of it. “N” she wrote for no and she wrote it very large as if to say “certainly not”! Not long after, she wrote to me. “I need to play with kids.” She’d been sick all spring and it’s Nye impossible to have her with children when she’s weak. She catches things too easily, but I took what she said to heart. So one day in September we finally had our dear neighbors, Sarah and her little sister Hannah over for tea! Her mother called home to ask her husband if the girls were back and was quite surprised that in 5 hours they still hadn’t come home. Guess we were havin’ fun!

TheTrauma Bay

The next day Sarah came down with something or other and we were off to the ER. She had a seizure in the triage room and was rushed into the trauma bay. We ended up in the ICU. They hadn’t seen us in there in awhile and fortunately our stay was brief. It was some kind of unknown virus. She was working on a sniffle before the Tea Party. And don’t ask me what..it all runs together for me now. And don’t ask me what kind of seizure her last one was. She has one about every 4 days and those all run together too.

In the Trauma bay

More school visits in September

We visited the Kingsway School next in Haddonfield and the second grade class was just learning their letters. They said she’d have to be in the 5^th grade class to be at her reading and writing level!!!

We thought the Hollydell School seemed to be the best for therapy and for teaching. Their whole team met with us and they showed a lot of interest in Sara Ann, but they are 35 minutes away and Mom is scared she won’t be able to get their fast enough when she seizes. The Larc School is only 10 minutes away so we will visit them again to see the teachers in action. And we also have to visit a school in Burlington as another Collingswood child attends there and they could consolidate the bussing. It’s very expensive to school these children. I think it will cost the township $100,000 a year what with the tuition, the bus, the driver and the private duty nurse! And they didn’t budget for it this year. They are making us go through a long assessment to prove she is really ready. Well whenever we can get her in school, hopefully no later than next January, we will certainly look forward to having more time to get things done too. I will have more time to sell mom’s books and Hugh will be able to get more work. And just maybe we can make some music again. The sooner Sara Ann gets a life….the sooner we get a life and are we ever ready!

As the nursing turns…

It is also dependent on our nursing that we will be able to “Get a life” again. We’ve really been through the mill on that score. January and February we used up all the 360 hours of nursing our insurance coverage had been reduced to with no explanation and only $300 decrease in our monthly price. Crazy! From there we were able to get a NJ State Waver which only paid for 9 hours a day of an RN at the lowest possible rate. The waver offered so little for LPNs the agencies wouldn’t accept it. We had to change agencies. We were only sent nurses who would work for rock bottom wages and who had literally no experience. Sara Ann was often the first case ever for these rooky nurses! A kid who scares 20 year experienced ICU nurses gets sent the beginners! Go figure!! So to everyone’s displeasure we had to let a lot of nurses go. We basically did without and also did without our sleep, our income and our sanity…all better than risking her life.

Then, Sara was in the ICU for 6 weeks in the spring with a terrible respiratory infection. Dad was able to complete the taxes and the Medicaid forms while we were out from under his nose. In June we got Medicaid which granted us 16 hours of nursing again! Yahoo, only not so fast. We switched agencies to Bayada, and they have sent us very, very experienced nurses…a welcome change, but, not nearly enough of them. Many go on vacation over the summer or they are home with their kids while school is out. It was not until the 3rd week of September that we had more than 3 shifts of nursing a week!!! It’s now been 4 and a half months with Bayada and we still are several shifts short….agh! It takes much too long to build the nursing for our case.

Overwhelmed, strapped for time, bushed and barely able to work!

This is why you haven’t heard for me in so long. I’ve been spending every moment either with Sara (as in 16 to 20 hour days) teaching or sleeping while my poor husband does literally everything else from dishwashing, to garbage, to staying up till 3am every night and sometimes later, watching her while I teach, drawing her meds for the whole day, banking, shopping, post office, dealing with the insurance agency, paying bills. He’s our hero…if it weren’t for Dad this ship would have gone down a long time ago. So if you come to visit, you might find the yard is pretty over grown this year. Our house is clean in the room we teach in and that’s about it and if you eat with us, we just warm up store food instead of cook anymore…unless Hugh isn’t too tired to get inspired. Don’t ask me how we’ve done it…I honestly don’t know. We just keep determinedly plowing ahead.

Never again!

Just one more story….it’s the greatest news ever and it’s straight from Sara Ann. She grabbed the pen and held it on her own this week. I only held her wrist. She wrote, “I like to write all by myself.” I was stunned. It was a little hard to read because I wasn’t steadying her hand…but she did it. Since then she has wanted to practice writing her letters in her workbook over and over, “by herself”. We took her to the neurologist’s this week. Then she demonstrated and by herself she wrote, “I am writing”. The neurologist flew out the door with her paper to Xerox it and put it in her file. I suggested she write more when the doctor returned. Sara wrote, “I need to go to the bathroom.” Again, she was pretty amazed and that went into the file too…the file at CHOP and you know what that means? They can never call her non-compos mentis again!

Here Sara Ann is writing Y for Yes by herself!

I’m only holding her wrist, she is doing the movements herself.

Parties

October brought a lovely Halloween party at the Newby School down the street. Sara went as an angel and she got to walk with all the school kids in the Halloween Parade. She got to meet her Penpal Sonia. The following week we celebrated Sara Ann’s birthday down at the dance studio. We dramatized a story she wrote called Happy the Whale and we had plenty of kids to help.what she wanted for her birthday was to be with children. I hope to have the video up soon on her You Tube channel.

“What was your favorite thing at the Halloween party Sara?” I asked. “Sonia” she wrote smiling. “What was our favorite thing about your birthday party Sara?” Again she wrote, “Sonia”. She is so happy to have a friend, a child who seems interested in her life. That sweet little girl who wrote that letter and the teacher whose idea it was, started a whole explosion of communication in a child ready to grow up and enter the world.

Now it’s December…

Just 10 days till Christmas. I know, I’ve been helping Sara Ann tear the loops off her paper chain to count the days. I haven’t decorated and I don’t have a single present wrapped. Next Monday, we are taking Sara Ann to visit a specialist to discuss correcting her jaw which is too far back by at least an inch. We are hoping to use myofacial release and a bite plate to correct it. The therapy is very expensive but it sure beats the surgery that CHOP is proposing. It will get her tongue out of the back of her throat, and make it more functionally possible to develop a regular swallow. We are praying they have some real answers and next praying for a way to pay for it.

Tuesday we are trialing a Moto-med bike made in Germany that might take the place of the Quadriciser. The Make-a-Wish Foundation found it and they thought it might be even better for her than the Quadriciser. The Quad is so huge we would have to get rid of our dining room table to make enough room for it. The Moto-med is smaller, portable and computerized. If she starts to push herself it will let her and if she can’t complete the push it will push for her. I can hardly wait for the day to arrive when she is on this thing every day. Hopefully, it will help her develop some strength, trunk muscles, help her breathe deeper and clear her mucus, and then maybe she will be able to find enough strength to hold up her head. Dad insisted on seeing one in action before we made a final decision. So we are driving two hours to Allentown on Tuesday to check it out.

Wednesday the school psychologist is coming by to administer a special test she is creating to try to measure Sara’s abilities and intelligence so they can figure out which class level to put her in. It will also help the district decide which school type they think she we will be eligible for. Thursday I teach all day and then we are largely without nursing until Monday. So like I said I’m not sure how we are going to squeeze in Christmas too, but squeeze we will. It just might be another one of those years where our relatives get their presents in July, LOL.

Our next chapter…

Coming up will be about how to figure out the nursing and child care while we try to work assuming she does get into school. One of her nursing shifts will be from 8 to 4. I would lose the shift in the evening when I teach…not sure how we are going to pull this off. Of course if we can maybe get the biteplate thing going and get her swallowing better, maybe we could actually do without nursing at night and move that nurse to the evening??? I don’t know; guess we will cross that bridge when we come to it.

Today we got a letter saying they are raising our health insurance rate 40%. NOT… I mean…Impossible…so we’ve got to find a new answer there too.

And last but not least there is the HOUSE. Oh boy, where do I start? We just need a major miracle in this department. She is 4 ft. 2 inches now and 55 pounds. If she has another growth spurt like the one this fall, with all our stairs, we are had. Maybe I should just say when she has the next growth spurt, because that has been her pattern. We are destined for a new house. Ask Aladdin how we are going to land it, but land it we must.

A conversation, a drawing

So let me end on this lovely note. Sara wants to sell her art. It is just amazing art work for a child her age and with her disabilities. Here is one of her most recent drawings, of The Secret Garden. Here is our conversation before she drew this piece.

“Mom, what’s wrong?”

“I’m sad.”

“Why?”

“A dear friend of mine died today.”

“I want to know about death.” she wrote matter-of-factly. “Is it real?”

“Oh, yes, it’s real.”

“Do I know someone who’s died?”

“Your Mamoo died but you were too little to remember.”

“Where did she go?” she asked.

“I’m pretty certain she went to heaven. Do you know about heaven?” I queried.

“Yes, from a book,” she answered.

“What book?”

“The Secret Garden”, the nurse had read it to her.

And two days later while in the hospital, she passed the time drawing this remarkable drawing from her imagination. I thought she was just scribbling but she drew and drew and it took form.