Mom of a miracle

Welcome. My beautiful daughter Sara Ann Kronrot, acquired a severe brain injury at birth from lack of oxygen. The beginning of her story is written in detail at her website listed a few lines below. My husband and I made a commitment at her birth to help her reach her fullest potential and give her the best life we possibly could. We’ve been hanging on through the wildest and most rewarding ride of our lives ever since. The following update is from a series of articles made available by e-mail to our immediate loving friends who have sustained us since our daughter was born in November of 2004. This group has now grown so large I thought I should at long last begin a blog. The  first 12 updates are listed on her site at www.friendsofsara.com They must be opened from 1 to 12, they won”t open from 12 to 1. I hope to post the others here some day. If you really want to know the middle of the story, send me a message and your e-mail and I will forward them to you. This post is unusally long because it was a particulary busy year and I didn’t write for many months. We have a lot of catching up to do.

 Sara Update 47 (long one)
Written 10-21-09
Here’s a brief synopsis of our lives since Christmas 2008.

January trip for 4 Eyes
We tried to do more HBOT therapy in Lancaster in January but Sara’s sinuses weren’t cooperating. Our next project was to return to Connecticut in February and get Sara Ann a second pair of glasses that were for distance. They are made with special prisms. She has learned to like wearing them in the car and watching TV. The doctor said that her eyes had improved from the first pair we’d gotten her in November, Her nystagmus (roving eyes) was not as severe and the eyes were beginning to focus better and more centrally. The glasses were each $1,000. They were worth it; no one else is getting the kind of results that Dr. Padula is with cortically blind kids. She is enjoying seeing so much and she is more verbal in response to the things she is seeing. We also appreciated the delicious meals provided by my long lost Texas cousin Jan. We hadn’t seen each other in forty years…wow!

New Jalopy in February, our car died and we used the Maxim funds to help put a down payment on aa new Toyota Sara Ann van. She has gotten so much bigger that it is truly a Godsend. She is now 45 pounds and 46 inches tall, which is quite tall for a 5 year old, so the extra space was more than appreciated. And just to show you we aren’t sitting on our hinies twiddling our thumbs we have already put 15,000 miles on the van by running her around to all the therapies! Next we have to find a donor to cover the $1200 special needs car seat that the insurance won’t cover. She’s so tall her head is over the old car seat. Is that illegal?

January through May
Physical Therapy We took Sara to her physical therapist 5 days a week instead of 3. We spent 3 hours a day traveling for this invaluable therapy. Sara’s trunk has steadily gotten stronger. The PT said that all the limbs begin to function once the trunk gets strong. She’s holding a stand for a full minute and is now using her shoulders in her crawl to catapult herself halfway across the mat. The therapist is encouraging us to get her into horseback riding therapy next.

Local Swallowing Therapy We took her to her swallowing therapist every Friday, who is now assisted with an occupational therapist, too. Every Friday we were gone for 8 hours (4 of it is driving time) doing swallowing, OT and PT. Then we got home about 4pm where we were met by her speech teacher provided by the school system. Sara has advanced so much with her swallowing that her doctor felt she was ready for a full swallowing/feeding program at the hospital during the summer.(see below)

GI Tract, Sinus Infections, and Jaw In April and May Sara Ann had a few hospital visits for GI problems but they thought her digestive system was out of whack because of all the antibiotics for the sinus infections. The sinus issues are really a problem. We had many discussions with the doctors as to whether we should get a bite plate or do a jaw operation to bring her jaw forward and open up the back of her airway inside her mouth. We’ve now learned that she cannot have the bite-plate we preferred because first of all she never bites down as her mouth is always open so it would be ineffective. The second reason was conclusive factor, if the bite plate were to dislodge and go sideways it could lodge in her throat and make her choke. Now we have an appointment coming up with plastic surgery to discuss a possible jaw operation. Our big question is can it bring the back of the tongue out of her throat? Dr. Eicher said she thought we could train the tongue to come forward. I also read that patients with Pierre Robin often grow out of it. In their teen years the jaw often grows out further of it’s own accord. But we are in the meantime just trying to find ways to keep Sara’s airway open, especially when she’s sick. Pulmonology also offered some other answers.
Catching Up Some of the best news of all is that we have had steady full time nursing for almost a year now which is a first. Between that and not having to spend every spare moment fundraising (thanks to last year’s corporate sponsor, Maxim Group), Hugh and I caught our breath a little. It was a good thing because after 5 years of this we were pretty exhausted. Hugh got a new part time job as a church organist. We even got to do a little performing. You can hear me sing with ex-halfback turned operatic tenor Tommy De Horney III as VivaViva!, under “video” at www.myspace.com/vivaviva .We are singing selections from West Side Story and La Boheme or at my website, www.melissaperrysoprano.net Still, the year had a pretty hectic schedule and we are still trying to catch up 5 years of paperwork.

Chiropractic We took Sara to a Network chiropractor regularly and noticed an improvement in head control, trunk strength, hand, arm, and finger movement, purposeful hand usage and more talking. We plan to keep this important part of therapy going.

We’re Publishers! The last week of May, I attended Book Expo America at the Javits Center in New York and made some important connections to help us sell my mother’s children’s books I inherited; One Big Hug and Who’s Not Asleep?. So we are now publishers! Neither of us is able to work full time as Sara Ann’s care is still so demanding. We are hoping the book business will take off and we will create a new stream of income for our family. You can see and order the books at www.mamoohouse.com .These books make great Christmas gifts for children ages 3 to 8.

Sara Ann the Movie Star! Mike told us at Maxim’s annual golf outing, “You’d better get on Oprah if you want to sell a lot of books.” Well, maybe we will, because guess what happened? While on my way to the BEA, I inadvertently met a gal named Candice, who makes documentaries on the bus. She got so interested in our story that she offered to make a film about us. She came to visit us a few weeks later at the swallowing program at St. Joseph’s and later in August at our home for ten hours of filming in all. All of the time, labor and renting of the car and camera came out of her own pocket, so you know it is and will be a real labor of love. She is producing a 3 minute shorty to help us continue fundraising. She hopes to make a full length film to take to a festival, but she needs to film many more hours and spend a long time in the editing room which is $2000 an hour! If anyone there is interested in backing her for either the sort or longer film projects, I will put you in touch with her right away.

June Angels were watching over us! We got back to Lancaster for more hyperbaric oxygen the first week of June, but Sara Ann came down with a virus, so we stayed home the next week to let her recover. That Tuesday, our house was hit by lightning, which struck our chimney and jumped over to the electrical box. The very heavy rain and lots of luck were all that saved the house from burning down with us in it. The fire marshal said we were very lucky to be alive. Apparently these events, usually burn a house instantly to the ground. We did lose our computers, internet, telephones, A/C, garage door openers, doorbells, etc. It did something strange too, turned all the water black in the toilets! Eeeeg. Hugh said that’s because the current went to the pipes too. It even broke our toilets. The house itself had relatively minor damage, but we are still waiting to resolve the insurance claim and make the repairs. We spent the day in the dark waiting for the power company to come. The fire department was kind enough to deliver a generator to run Sara’s equipment. Hugh spent 6 weeks doing minor repairs and writing up the report, stealing valuable time away from other waiting projects.

HBOT and Quadriciser Improvements We were able to do some more hyperbaric oxygen the second half of June, but Sara had her 6-year bottom molars coming in and, believe me, dealing with a large 5-year-old having a crying fit while sealed up in a tight metal oxygen chamber is not fun. With a kid who can’t yet swallow, it is even dangerous.
Here were some immediate results from the oxygen that we saw:
Sara is loudly laughing at Sesame Street because of improved vision.
She is talking much more and speaking in short phrases and sentences,
She occasionally holds up her head spontaneously on her own.
Her PT notices that she is less tight and her tone is better. She is making more spontaneous purposeful movements.
The head righting is entirely new and a very exciting development. We are hoping that if it helps the neck that it’s also helping the throat and her swallow. You can see her in the oxygen chamber under www.hboxygen.com

July in Swallowing School, we took off for Hugh’s Sister’s house in Livingston, which would be our 2nd home while Sara attended the St. Joseph’s Feeding Swallowing Center Day Program, which we dubbed, “Swallowing School”. Sara loved the idea that she was getting to go to school. The first day they informed us that they were just going to observe us, because they weren’t sure if she was really appropriate for the program. They have a new state of the art facility and are considered the best swallowing program in the country. Each room has a double mirror. The patient and therapist sit on one side and do the activity while the doctors and feeding team watch on the other side of the mirror without the patient being aware of it. Sara was gleefully doing whatever the therapist asked for. Opening her mouth wide and moving her tongue in a swallowing movement. On Thursday of her first week, Sara Ann picked up a viral bug and ended up in the ER. Mom was hitting the wall that day too, as she’d had to fire the night nurse and had done four 20 hour days in a row. Sara was admitted to the ICU. Believe me, you know you are really exhausted when you can sleep on a pull out chair in a small room with 3 families and 3 sick crying kids separated only by 2 thin curtains and alarms blaring all night.

Sticking it out Sara’s doctor called so disappointed for our set back. She said “Oh, Sara Ann is so ready for this program.” Well I was determined to make it work. Our lodging hadn’t really worked out either as we were allergic to the dog and an hour away. My nurse from home said she’d only stay if I found a hotel. So I wasn’t sure how we would pay for it, as by now every Maxim dollar was relegated to some therapy or the car. But now that they wanted her, since she’d proven herself so well, I was determined to see her through the program. We moved into a suite at the Marriott. I told a friend about my dilemma and she got all the guys at her job at Aberdeen Securities, guys who travel constantly, to donate their Marriott points and bless our stars again, it was miraculously paid for!
Mystery unsolved Sara Ann continued to sail through the program. But while she mastered all the business in her mouth and with her tongue, there was still a mystery to be solved. After every 4th swallow or so, she would cough her secretions back up. It meant that the muscles in her throat down the pharynx were not functioning. Nothing was getting to her stomach. No one was sure what the next step was to get her throat to kick in.
Heavy Schedule At Swallowing School, she had the most intensive schedule of her life so far. She came home absolutely bushed every night. She got daily PT to improve her breathing deeper and utilizing her diaphragm more. She had four swallowing sessions of 15 tries each day. She was hitting 8 out 15 by the time we left the course. Every minute of the 8 hour day at school was utilized. We still had to work in two nebulizer treatments and a brief nap which she no longer resisted.

First Kiss The last week, she was included in the art sessions in the playroom with the other kids. The first day a six year old boy kissed her on the lips and told her she was beautiful! (Oh Lord, it begins already!!!)She loved being with the other kids. I’d avoided allowing her to be with them the first couple of weeks but had finally given in. MISTAKE!!!
Set Back She landed in the ER again with a bad seizure. She was coming down with another virus, much more severe than the previous one. My home nurse sat with her, while I packed us out of the hotel. I was frustrated beyond belief. It had taken me 2 months just to coordinate all the nursing companies’ schedules involving over 32 people so she could go to swallowing school. Now why were we having this set back? I cried all the way to the hotel. I cried the whole time I packed and I cried all the way back to the hospital. I wanted her to swallow more than anything in the world. We had carved out the time and found the resources to make it happen, but without her good health we were getting no where.

Respiratory Distress Back in the ICU at St. Joseph’s, she was horribly sick. I began to have true appreciation of Children’s Hospital of Philadelphia. She was de-saturating down to 60 (she’s supposed to be above 93) and she was already on 6 liters of oxygen. It was a Sunday. I asked if we could fly her to CHOP in Philly but they said it was too much paper work and we couldn’t go till tomorrow. They didn’t seem to understand that she was in respiratory distress. It would have been a very different story at CHOP. Finally they gave me a 24 hou nebulizer. I stuck the mask on her nose, climbed in her bed and put her over my knees. I pounded on her back for 4 solid hours trying to break up the mucous. I had to do it again the next night. She was a fountain of secretions and needed constant suctioning. We decided once she was out, to go home and rest a few days and we planned to return to the Swallowing School a couple of weeks later.

A knot in Our Throats When we got home 4 days later she had another bad seizure. This time I was alone with her. I gave her the diastat seizure medicine but she pooped it out and didn’t get anything to stop the seizure for another 45 minutes. They admitted her to the hospital. She started a constant dry hacking cough. I recognized the sound. It was the same cough the little boy had in the ICU at St. Joseph’s. ARG! She grew sicker and sicker over the next 4 days. Late one evening, as she lay there heaving, we all agreed she needed to go upstairs to the CHOP ICU. They got all the instruments out ready to intubate which means she would have ended up on a respirator. I was terrified. I called Hugh at 3 am. He rushed down to join us.

Slow Recovery and Some Problems They inserted a nasal pharyngeal airway in her nose. At last she could breathe. The lungs started to calm down and the fever abated She recovered but her recovery was much slower than usual. We were in the hospital for 2 weeks. . Needless to say, I gained 15 pounds living at the hospital this summer. I eat when I’m nervous, upset, worried. And I couldn’t leave her side to exercise…not even to walk around the hallways.We took her home but her neb treatments were every 3 hours instead of every 8. The bounce back kid just wasn’t bouncing. Also, her hand was moving constantly, like when she was little. Her leg began jerking, her lip was quivering constantly and she simply was not as alert. Her breathing remained labored. We were very worried.

Brain on Fire We took her to the pediatrician. He thought she needed to go back in for some tests. So we readmitted her to the hospital and met with neurology who gave her an EEG. She was seizing constantly they said. They wanted to start her on seizure drugs to stop it or it might ignite a process in the brain called “kindling”. We needed to stop all of this now or it might become more serious later. So she is now on a course of Kepra, an epilepsy drug. As of today she’s been on it three weeks and she seems to be doing well. She is more talkative than ever before. I’m not big on drugs but I don’t know what else to do and it seems to be helping.
Need to Stop the Drip We also did some other respiratory tests. The most informative was the saliva-gram. Sara ingested a little radioactive material and we waited to see where it went. Sadly, it went straight into her lungs. Nothing went down her esophagus. The doctors are very concerned about the irritation from the saliva that she is aspirating into her lungs. They believe her respiratory track is so irritated that it’s not allowing her to heal completely anymore. Of course they did do the test at her sickest. Hopefully, it wasn’t as bad a problem when she was well. We must to find a way to dry her up or get her swallowing or both.
Need HBOT pronto We are certain, that the hyperbaric oxygen will significantly help both her lungs and neurology and it is imperative that we get her back there as soon as possible. If we can take her back into the oxygen, the deeper level of 1.5 might reach the part of her brain that effects her throat. Or the stem cells might do it. Or more work with the swallowing therapists. Or daily rides on the Quadricizer if we could get one for home. At the hospital they are only offering the drugs Robinol, scopolamine patch or botox in the salivary glands, none of which we are happy with. Anyway we have an ongoing battle and we do need help to fight it as we are now back to square one with fund raising. Our friends are helping to organize some community events, and we are looking for the next corporate sponsor.

Stem Cells Last week Sara Ann lost a tooth. Fortunately the nurse saw it and she didn’t swallow it. She had 4 more loose teeth. A visit to the dentist was in order. At midnight, the day before “the grand pulling” was to occur, I suddenly remembered, “baby teeth…stem cells. I think they are saving stem cells from baby teeth now.” Not only are they saving them but these stem cells are very similar to umbilical cord cells and are much more versatile than adult stem cells. I went on line. There were plenty of companies but they all wanted you to have a kit. Well we weren’t going have one in time. That was for sure. I lucked into a video interview of the doctor that discovered that stem cells were in baby teeth. At the very end of it, she said, “Oh if you don’t have a kit, just drop the tooth in a clean glass of milk.” Apparently the teeth have to be nourished, cold and not shocked by movement. So we went to the dentist, and he was game. We dropped them into a bottle of milk. I ordered the kit and dropped it into the UPS the next day. They called me Monday and said they’d harvested the cells already, they are viable and in storage. Apparently, they are doing a trial study with CP kids at Duke University right now using umbilical cord cells. I shot off an e-mail to them and am waiting to hear back. There is a blog from a mom who has her kid in their program. Apparently, they are getting great results…really miraculous results in some cases. Of course the cells are more effective the earlier you use them. So we are anxious to find someone to administer them to Sara Ann soon

Where do we go from here?
We need a new house by next year. We desperately need a large spacious handicapped equipped rancher. Sara Ann will probably be too heavy to carry up all our stairs within 3 or 4 months. My arms are already aching every time I pick her up.
A Quadrisizer is also desperately needed to get Sara Ann really moving and breathing. . This is a kind of bike that exercises arms as well as legs and is made specifically to pattern quadriplegics. I was just speaking with the maker and he said that people who use these daily see significant changes in their abilities, including mobility, speaking and swallowing. They cost $17,000 and they don’t rent them. We are going to try to do an online campaign for this.
Continuation of her cutting edge therapies: Neural Developmental Physical therapy, hyperbaric oxygen treatments, swallowing therapy and swallowing school. Need to raise funds for all of these things either not or only partially covered by insurance.
Addition of new therapies: hippotherapy: (horseback riding to strengthen her trunk) and Stem cell treatment if possible. Again need funds. I hear they want $20,000 just to administer the stem cells not including travel etc.

Some important thoughts We think these days with the advent of new therapies, brain injured children like Sara Ann have unlimited possibilities and shouldn’t have to be sent home with hospice, or left in institutions, or trained to be part of the hospital system. We believe that if intervention and therapy is done early enough, in the formative stages, these little lives can be recovered. We were told Sara Ann would never see, hear, walk, talk, or anything, but she sees, she hears, she can now hold her stand for a full minute, she talks to us daily (Today she told Dad over the phone, “How are you?” and “I love you” and she told our videographer, “I gonna mi you too”) and she’s learning to read and write. Her therapist believes she will walk. It’s a lot of hard work but every minute is worth it. And it’s all been made possible by the community of love surrounding us and everyone’s belief that it’s possible. For a child like this it really does take a village to raise a child and give it the possibility of reaching their full potential. We hope that someday all these special therapies we are seeking out will be made available free of charge to any child suffering with CP.

Melissa Perry Kronrot
mother of Sara Ann Kronrot
www.friendsofsara.com