Helping Sarah

Just an update

2011-11-03T09:27:00.000-07:00

Wow, time has flown by since I last posted. Sarah has recently gotten on oral Baclofen. This is a medication to help reduce her spasticity. It has shown to be a bit effective, although the doctor and I have decided not give her the full maximum dosage each day. While it is a good medication, it does have a lot of unpleasant side effects (sleepiness, vomiting, etc). At the dose she is currently using, she has no side effects and she's a little bit looser.

In September, Sarah got her first round of Botox. No, not for wrinkles! They were injected into her calves to help with spasticity as well. Although this helps her, it does get rid of the tone in her legs that she is used to. Within two days, Sarah didn't have the tone anymore to walk in therapy. Poor girl was a little scared, but we sat and talked about it and worked harder in therapy than ever before. She's not at 100% yet, but she's very close. Now she's actually using the muscle instead of her tone. We'll have to wait until January to see if Botox will be a regular thing for the next few years or not.

2011-11-03T09:26:00.000-07:00

Hello everyone! Sarah has done much better after the Therasuit session. She is now able to walk with the aid of a hand-held walker around the gym in the therapy center. With much practice, we are hoping that she will be able to transition this into our home.

Sarah has also started taking oral Baclofen. This is a medication that reduces the tightness in her muscles. Since it is in pill form, it affects her whole body. With this, we saw her feet loosen up. Most importantly, she's starting to say two-sylabul words. This is an amazing feat, with regards to speech therapy. The doctors believe that her diaphram was also "loosened" during her Baclofen regimen. This allowed her more ease in motor planning her words.

Our next step is Botox. Sarah is going to have a series of injections in her ankle towards the end of September. This is to reduce the tightness in that area. Botox works like Baclofen except it can be targeted to specific muscles instead of the whole body. The combination of Botox and Baclofen might be enough to delay or eliminate the need for surgury in the future.

2011-05-13T16:52:00.000-07:00

Hello everyone! Exciting news for Sarah has just come about. Sorry I haven't posted in a long time but things have been crazy since Sarah's stem cell procedure. She did very well, but we haven't seen any new results. The only thing that has changed is her sleeping pattern. She used to wake up from spasms and now is sleeping better through the night. It is still early for results, but we are now going to start her on Therasuit therapy. We got a great deal from the therapy place that does it because they wanted us to fill a spot on short notice. Sarah will start Monday and go through the program for three weeks. Each day will start with 30 minutes of massage and then 2 1/2 hours of therapy. She'll finish her last day on June 6th and her Pre-K graduation is on the 7th. We are very excited to see her results.

2011-04-15T17:30:00.000-07:00

Hello everyone! We have been home for a few weeks and Sarah's doing great. She had a bit of a reaction after the procedure. Normally, she would be tired and unable to eat for the remainder of the day. This time Sarah was vomitting and sleepy for about three days.

The doctors monitored her overnight the first night and with the help of medication we were able to control most of it. Sarah was back to her usual self a few days later. When we got home, the doctors called to tell us some great news. Last year, Sarah was injected with about 6 million stem cells. This year it was 44 million.

They aren't sure what caused the spike in stem cells because the same protocol was followed. However, this explains Sarah's increased reaction. She did a great job and I can't wait to see any changes that will occur.

2011-03-25T01:46:00.000-07:00

We're back home now! Sarah did a great job in Mexico this past week. Her procedure was on Tuesday. The procedure itself went very well for Sarah. I really saw what a patient girl she was that day. She had to be fasting from midnight the night before. The first part of her procedure was early in the morning, but the second part wasn't until 4pm. She was out, into recovery by 5pm without a drop of water or a bite of food. Even then she didn't complain. Sarah had a strong reaction afterwards with vomiting and a fever. We got that controlled with medication and within 24 hours she was feeling better. Even today, she's not back to her full normal self, but she's eating soft foods and drinking a lot. I'm sure one or two more days and everything will be fine.

On the other hand, the doctor in Mexico gave me a call today to talk about Sarah. She said that last year, the lumbar puncture transfusion of stem cells (they do both in the spine and via IV) had roughly 6.9 million stem cells. This time was about 40 million stem cells. A very very big difference. This might explain why she had a stronger reaction.

2011-03-18T14:20:00.000-07:00

We made it to Mexico again! Our flight came in late last night but we are here in Monterrey! With some quick, last minute preparations we were able to get Sarah back to Mexico for another stem cell treatment. Sarah was greeted at the hospital this morning by all the familiar faces of those involved in the study. Today (and the next three days) will be filled with shots of Neupogen, development testing, and blood work. On Tuesday, Sarah will undergo the stem cell procedure. She's a tough little girl who, after crying from her first injection, was easily back in a good mood after the doctors bribed her with a lollipop.

2011-02-25T06:51:00.000-08:00

The clinical trial study that Sarah participated in (in Mexico) has been concluded. We will be returning for a second treatment, however this is outside the scope of the study. The findings were presented at a medical conference in Hawaii last week. The doctors told me that it was recieved with positive vibes from other physicians and researchers. Here is the final results poster link .

The study itself will be published soon in a medical journal, but this poster shows a summary of the findings. I hope this means that future children will have access to this treatment a normal protocol for patients with cerebral palsy.

Sarah is a big sister!

2011-01-25T10:00:00.000-08:00

Sarah became a big sister on Jan 12th. Sarah seemed very excited to have this new "toy" to play with at home! We banked baby's cord blood in the hopes that one day we would be able to use those for Sarah. However, we're going to push Sarah's stem cell treatment in Mexico to April. We are waiting on baby's birth certificate and other papers to get him a passport, but it won't be in time to travel in March. I'm sure that delaying the procedure a few weeks won't be a big issue.

2010-12-25T23:09:00.000-08:00

Hello everyone! I know its been quite a while since I've updated this blog about Sarah. Quite frankly, not much has happened since then. Sarah and I returned from our long trip in October. She had quite a blast with all the traveling that we did (and was a very good girl during the flights). We came home and settled right back into the routine of therapy and school. However, we have decided to have Sarah return sometime in March for another stem cell treatment in Mexico. Sarah's verbal skills are picking up (she's starting to get better at attempting to mimic some words we say) as well as some of her fine motor skills. Using an adaptive spoon and fork, Sarah is now able to eat with about 75% independence (she still does need a bit of help). The trip to Mexico has not been exactly set as I am still pregnant with Sarah's baby brother. We will have to wait until he is born so that we can time our travel date (since we'd have to rush a passport for him). Luckily, the hospital knows this and the doctors have mentioned that anytime in March should be good to bring Sarah in.

I hope everyone is enjoying the holidays (and the extra time off work/school).

2010-09-03T03:16:00.000-07:00

We are on our way to Mexico! Our flight leaves this afternoon and we will be there through Monday. This will be Sarah's six-month follow-up. A bit of testing and and MRI should help show scientific proof that this worked for Sarah. Although, anyone who knows Sarah can surely see a big difference between March and now. Sarah and I have also decided to take a little ( 5-week) trip after her follow-up. We will be traveling to visit Sarah's grandparents and aunt, halfway around the world. Sarah deserves a vacation after all that she went through this year. We will post updates on her follow-up as well as fun pictures of the trip.

2010-07-30T08:02:00.000-07:00

(Sarah, four years ago today)
HAPPY 4TH BIRTHDAY, SARAH!

Today, our little princess has turned four. I cannot believe how fast time has passed.

With her birthday comes more big news. The stem cell study in Mexico is officially opening their procedure to those children who would like a second treatment. We have already set up Sarah's second treatment for next March. This would be at the one year mark of her first treatment in Mexico. I'm so happy that Sarah was included in this study. I hope that the results of her procedure one day help to make this a common place procedure for all children with CP.

(Sarah, this morning on her fourth birthday)

2010-07-15T07:28:00.000-07:00

All has been quiet with Sarah lately. We have set up her six month follow-up with the hospital in Mexico for Labor Day Weekend. I'm very excited to see the comparisons that the doctors see (from a medical standpoint).

Sarah is also going to have a big surprise coming soon. She will be a big sister in January. We are excited and immediately decided to bank this child's cord blood and tissue at birth. While medicine is not using donor stem cells quite yet, I have a feeling that in a few years it might just be a possibility.

2010-05-23T17:18:00.000-07:00

Video of Sarah walking in therapy on Friday.

2010-05-21T10:26:00.000-07:00

Today was Sarah's last day in intensive physical therapy. She did such a great job and pushed herself even harder than yesterday. I was so proud of her work, that I took some pictures as well as a video clip of Sarah walking in a walker. As soon as I can figure out how to post the video clip, I'll get it on here!

2010-05-20T13:35:00.000-07:00

Hello everyone! I just wanted to report quickly on Sarah. Today was her fourth day of intensive physical therapy. She is doing AMAZING! She's walking on a treadmill for 13 minutes at a time while I'm slightly supporting her under her arms. She has wonderful gait pattern and does not need to be prompted to move her feet. She holds on to the railing (its a special treadmill) and looks up and around the gym at other people without missing a beat. After resting a bit from the treadmill (resting meaning doing exercises that don't involve weight bearing on her feet) she holds onto a walker and takes steps around the gym. The only support we give is walking behind her (so we can catch her if she falls) and the therapist puts her hands on Sarah's hands so she doesn't slip off the walker. Sarah was able to do an amazing 110 feet today with no TEARS! It has been a wonderful day for Sarah's new skills.

We are so proud of her!

2010-05-12T09:52:00.000-07:00

Hello everyone! I know it has been almost a month since I've updated this blog but much has been going on with our lives. However, I'd like to share some important things that Sarah has been doing. Since her stem cell procedure, Sarah's sitting balance has greatly improved. From sitting unassisted for 30 seconds-1 minute she now sits for 20 minutes or more. Her left hand/arm use has increased as well. She's got better eye-hand coordination with her left hand, allowing her to grasp objects and put them into her mouth (a feat she was unable to accomplish before the latest procedure). She's transferring from one hand to another smoothly and grasping with both hands at the same time. Lastly, Sarah has said her first word.."up". We think this is due to her therapists always saying "Up, Sarah.". Now she tells them "up" when she's standing up or doing her work.

Just today, we found out that the center that has the intensive physical therapy has a week opening next week. Since they needed to fill it quickly, we got a good deal. So Sarah will miss school for a week (and her Special Olympics performance) but I think this would be beneficial for her. She'll be there for 3 hours a day, each day. I'm so excited to see these improvements in Sarah and hope that there will be more to come.

2010-04-14T08:42:00.000-07:00

Sarah had an appointment yesterday with her surgeon. Things are healing quite well, but they have a few more weeks left to go before she'll be completely back to her self.
Still fighting to get insurance to pay for Sarah's new gait trainer and we have a few weeks before I find out what will happen. This is our last appeal, so if it doesn't work I guess we are out of luck.

Sarah is part of the ESE program in the public school system. What is very nice is that they have a month of summer school for children in the ESE program. It won't be at her school, but she'll be in a similar structure to what she's used to during the year. We will be staying in Florida during the summer. Normally, Sarah and I are traveling during the summer months, but I think that staying put this summer will be benefical for Sarah. She's been through so much in the last year, I'd like to keep her on her daily routine and not mess things up anymore.

2010-04-04T06:22:00.000-07:00

It's now early Sunday morning and things have taken a turn for the worse with Sarah. Yesterday, at 11am, we took her to the Emergency Room because she was severely dehydrated. Since coming home from the hospital on Tuesday, she's refused to drink and eat for long stretches at a time. Everytime we offer her food or water, she signs that she's "hurt". The pain medication wasn't lasting the duration of the dose and Sarah would be up every two hours crying in pain throughout the night. I had called the physician during the week, who just kept advising me to push fluids (easier said than done), but finally, yesterday evening they asked us to bring Sarah in.

She was re-hydrated with an IV and given a dose of morphine to help with the pain she was having there. We were advised to force-fed her liquids with a syringe if she refused to drink on her own. Her pain medication dosage was increased. We finally made it home at 2:30am. I hope that this is the last of it, and that Sarah will go back to being her normal, bubbly self very soon.

2010-03-31T18:33:00.000-07:00

Some sanity, finally! Sarah had her surgery Monday morning and she did great! Within 25 minutes after walking her into the operating room, she was in recovery. I was glad that they called me immediately to her bedside, and spent an hour and half with her until they wheeled her to her room. My poor little princess has barely drank since the surgery and hasn't eaten more than two ounces of pudding. She's refusing even ice cream (her favorite thing in the world). They finally allowed her to leave the hospital Tuesday evening. Her mood was much better after she came home, but she's still not eating or drinking well.

Sarah knows a few words in sign language and one of those words is "all done". We worked on that for months so that she wouldn't throw her toys on the floor or knock off the plate of food when she was finished with them. In the hospital, Sarah's medication was all by mouth (not through the IV) and she kept signing "all done" as they were giving her the medicine because her throat hurt so much from it. I hope starts eating better tomorrow as I'm getting worried about her lack of food and all that medicine into an empty stomach.

2010-03-27T12:46:00.000-07:00

Sarah's school had Field Day on Thursday. Sarah had spent a few months practicing, with her class, all the different relay races that they would do on Field Day. I was lucky enough to be able to go out to her school and watch the races. The weather was perfect, especially with all the water ballons and water races they had. However, Sarah wasn't too happy. She saw me watching the first race, and immediately started to cry. Usually, I pick her up from school and we leave right away. I think she was upset because she wanted to go home. About three-fourths of the way into the races, she started to finally get into the groove of everything. At this point, she didn't want to wait her turn to race but ended up 'escorting' all her friends across the field. I guess she was making up for the earlier races where she planted her feet into the ground and refused to participate. I'm wondering if most three and half year olds are this stubborn.

2010-03-18T16:22:00.000-07:00

Hi everyone. We got back from the ear, nose, throat specialist earlier today. Sarah's adenoids and tonsils are quite enlarged. They will be removed on the 29th of March at the Children's Hospital in St. Petersburg, nearby. Due to Sarah's epilepsy, she'll have to spend the night in the hospital after the surgery. The surgeon felt that it would be safer, in case there was any seizure activity that happens from the anesthesia. We truly hope that this is the last of the craziness for a while.

2010-03-17T13:23:00.000-07:00

There's a saying that goes "You can't win them all". Today, we found out that our fight with insurance has been lost. Sarah uses a Rifton Pacer Gait Trainer to walk around our home, outside, and in her weekend school. It is the only way that Sarah can walk around independently. Last October, I had placed an order for the same Gait Trainer but in Medium Size. Sarah had outgrown the Small size in the summer.

After sending countless letters from therapists and doctors, a video of Sarah in her old gait trainer (to prove it's too small), insurance said that this piece of equipment is not medically necessary. I'm quite angry about this, because it IS medically necessary. It's the same as denying a wheelchair for a person who has paralysis. So we might have to pay out-of-pocket for it. I'm going to pay for it, but I'm going to continue to pressure the insurance company to, perhaps, reimburse me for it.

Cerebral Palsy: A Complete Guide for Caregiving (A Johns Hopkins Press Health Book)

2010-03-14T20:35:00.000-07:00

Here is Sarah, three days after the procedure in Mexico. We did a little sight-seeing while we were there. As you can see, Sarah is sitting unassisted. Last year, around this time, this feat would have been almost impossible for Sarah. If she did sit, she would have been hunched over and probably topple within a few seconds. Thanks to a lot of work, she sits with her back straight and can stay in this position for at least five minutes.

Therapy really helped her sit, however, I personally believe that the day-to-day things work even better. Each morning, I would place Sarah on the counter in the bathroom to brush her teeth and wash up. I would stand in front of her, so she wouldn't fall, but I wouldn't touch her (so that she could work on balance without my support). It took a few months, but gradually I saw her back get straighter and straighter. It was nothing more than having her sit on the counter in the bathroom to wash up, or on the counter in the kitchen while I'm getting her some water to drink.

Tomorrow is Sarah's first day back to school. She's excited, as I keep mentioning school and her eyes light up. I hope this thrill of school stays, as she enters middle and high school. Tomorrow I will also be talking to the ear-nose-throat specialist for another consult for Sarah. Her adenoids really need to come out. What's interesting is that enlarged adenoids can trigger seizures in children with a history of seizures (like Sarah). It also affects speech patterns and a world of other things. I had no idea that two little enlarged glands could do that. Hopefully, she will have those removed soon.

2010-03-08T10:02:00.000-08:00

Hello everyone! I should have updated the blog on Friday, but we were quite busy with Sarah. Friday's procedure went quite well. Sarah was under sedation by 9am and bone marrow was removed from two sites on her hips. Sarah was allowed to awaken slightly and the bone marrow was taken to the lab to be processed. The physicians allowed Sarah to come back to the hotel to rest until the afternoon for the second part of the procedure.

We brought her back to the hotel, where she spent about three hours sleeping. Around 2pm, we arrived back to the hospital to have her sedated once again. The stem cells were inserted through a lumbar puncture in her back. Sarah also had extra stem cells that were not inserted through the lumbar region. The hospital will only put a certain amount of mL of stem cells in the spine, so that the risk of inflammation is very small. The extra stem cells were put through an IV into a vein. While there is the issue of a portion of stem cells not crossing the blood-brain barrier, it is better than tossing the extra stem cells.

Sarah did a wonderful job, came back to the hotel in the afternoon and was as cheerful as can be. Through the weekend, she was a bubbly, giggly little girl who enjoyed the day. Save a little bit of Tylenol and a sore back, you would never guess this little girl went through such a procedure.

This morning the physicians looked at Sarah and everything looked quite well. They will check up on Sarah one last time on Wednesday before we come home.

Thank you all for your prayers for Sarah.

2010-03-04T16:51:00.000-08:00

Hi everyone! Sarah had her MRI today and last shot. Poor thing had to be sedated anyways, but the physician was great. He gave her some gas to sedate her a little, and then inserted an IV to keep her sedated throughout the MRI. She did great and was out of sedation after an hour or so. She spent the afternoon napping and had a light lunch.

Tomorrow is the big day. She will be sedated tomorrow by 8:30am and the first part of the procedure will occur. They will extract bone marrow from Sarah's hip bone and then allow her to wake up. The laboratory will then take the bone marrow and extract the stem cells from the marrow. Sarah will then go back into sedation (as the process of extracting stem cells take a few hours) and the stem cells are inserted via lumbar puncture. The maximum that they will insert is 10mL. If Sarah should have more stem cells in the sample that they remove, in the morning, those extra stem cells will be inserted via IV. We expect to be back in the hotel by 5pm, God willing.

I hope to share good news with you all tomorrow. Please keep us in your prayers.

2010-03-03T17:48:00.000-08:00

Hi everyone. Today, Sarah went in for the Battelle evaluation as well as third injection. She did great with the Battelle, although there was a few things they asked of Sarah that I know that she can do. However, the problem is that Sarah also has CVI (cortical vision impairment) and she needs visual objects that are not so cluttered. Since that wasn't taken into consideration, she was marked down for not doing something even though she CAN do it, if the colors weren't so crazy. I always feel like her evaluations are this big exam that would be detrimental if she failed. Even though I know the limitations of such evaluations, I still feel the need for her to score high.

Sarah then got the third injection where she proceeded to cry, until the doctor brought her a lollipop. He hadn't gotten the paper off the candy and she had already quieted down and opened mouth. She's such a ham!

Tomorrow morning is the MRI and final shot. Normally, she would be sedated but the doctor said that if we can sleep-deprive her until the MRI, perhaps she can fall asleep instead of being sedated. We will try to do that, so I will wake her up very early in the morning so that she can nap right before the MRI.

Friday, of course, is the procedure.

2010-03-02T11:19:00.000-08:00

We met a family yesterday who was finishing up with the study for their son. The father spoke a little English and he told us to not worry. The shots, that they give to increase the number of stem cells produced, can gives the child a little boost. As the stem cells are multiplying, some are released from the bone marrow and travel up to the brain. The father of the little boy said his son started to sit for a few seconds after the third shot (before the procedure was even done). The boy looks like he's three years old and the dad said he's never sat up before. I'm not anticipating anything will happen with Sarah from the shots, since Sarah has a significant amount of brain that has atrophied (about 1/3). It's only by the grace of God, that she is not so impacted by having such a large amount that isn't there. The doctors said that the other children in the study have seen improvements in gross motor skills (and not fine motor or speech). Sarah has gross delays in all three of these areas so it doesn't really bother me what gets improved, inshallah though we get something.

Today, Sarah went in for a quick shot. Tomorrow, she'll go in for an hour of testing and a third shot. She's doing an amazing job!

2010-03-01T12:47:00.000-08:00

Hello everyone. I'm sure many of you are waiting to hear some updates on Sarah and this new procedure. We just got back from the hospital for the first day of appointments. The doctors there are very polite and kind. Most importantly, they are very knowledgable about what they are doing. They did a physical assessment on Sarah as well as sat down with us and answered our questions. We had quite a bit of questions, but in the end, everything was to our statisfaction. Sarah had some blood drawn (which made her cry) for a CBC, infectious disease, and viral testing. She was also given her first shot of four, of G-CSF. G-CSF is a stimulating factor that increases the number of stem cells that are made in the bone marrow. This is done to maximize the amount of stem cells that are extracted from the bone marrow on Friday.

Tomorrow, we return for another shot

Wednesday is for the pre-op Battelle testing and the third shot

Thursday is the pre-op MRI and the fourth shot

Friday morning she goes in for the extraction of the stem cells from the hip bone. The lab will remove the stem cells from the other things in the bone marrow (such as red blood cells, etc).

Friday afternoon- Sarah gets the stem cells put back into her body via lumbar puncture.

Other than things, things are going well with Sarah. After coming back to the hotel, from the hospital, she ate lunch and is now taking a nap. The doctor said that tomorrow or Wednesday, her body might ache a little from the G-CSF but some Tylenol will certainly help.

2010-02-28T06:51:00.000-08:00

Greetings from Monterrey, Mexico! We arrived safely at the airport last night. Even though we speak little Spanish, we went through customs quickly and got a taxi to the hotel. Today is just a day of rest until tomorrow. Sarah's first appointment for the stem cell procedure is tomorrow morning. I hope to update this blog with good news.

2010-02-23T19:46:00.001-08:00

We are getting ourselves ready for the big trip on Saturday. I'm excited to see what this procedure will yield for Sarah in the near future. I'm also quite nervous as the date approaches. We have been hit with some new news about Sarah. During a routine x-ray it was discovered that her adenoids were grossly enlarged. Sarah snores quite a bit at night, and this can lead to sleep disruption, seizure activity, ADHD-like symptoms, and speech problems. I was quite unaware that enlarged adenoids had a potential for all these problems. We had our first consult this morning and will have a second one when we return from Mexico. The exact date to remove the adenoids will be set then.

It is hard to watch your only child go through so much in the first four years of life. Yet through it all, I see a huge smile on her face and hear the sound of laughter coming from her. Not because she is my child, but she is a beautiful little girl. Her beauty comes from within her. She has taught me and everyone around here to be patient. My life before Sarah was always on the go. Sarah has gone through more than many adults will. However, Sarah doesn't whine or nag about what is going on. She smiles and enjoys life.

Its a lesson for all of us.

2010-02-05T09:04:00.000-08:00

Here's Sarah working on the computer. Through the speech therapy services she gets, she also works on computer programs to help increase her communication skills. She has flourished since starting her computer work. Our little princess is growing!

Sarah's serial casting has been going quite well. She's gaining range-of-motion quickly, although is suffering with slight skin issues. She's getting a week break, in between each cast, so that the redness on her heels heals completely.

Our plan for Mexico is still in motion. Her procedure had to be pushed back until March 1st, which isn't too far away. We are all excited about the procedure and wonder what new skills Sarah will be able to accomplish after the procedure. Please keep us in your prayers!

2010-01-14T10:00:00.000-08:00

Sarah got her casts put on today. Did she cry? Of course! That's Sarah! She was mad because she had to be on her stomach while they were putting both casts on. As soon as she was off her stomach, she was quite fine. A bribe of a juice box and snack got a huge smile on her face. I'll post a picture of her in her casts when she comes home from school this afternoon. She can do most everything as she did before, except the casts cannot get wet (so it'll be fun to figure out her bath this evening) and she cannot walk outside in her gait trainer but she can walk on carpet. She'll be going back to the hospital next Thursday to remove the casts and put new ones on. The therapist mentioned that she will give Sarah a break from the casts for the week that we are going to be in Mexico for the clinical trial.

2010-01-06T06:38:00.000-08:00

Hello everyone! Hope you had a wonderful holiday. Things are going quite well with Sarah. We have set the appointment to travel for the stem cell procedure for the second week of February. Things are just falling into place. Sarah is also going to start something called Serial Casting. I'm sure she's not going to be too happy with that. She will have to wear a hard cast on her feet and have it replaced each week for four weeks. Serial casting is used to help gain range of motion and is acceptable for more than just CP.

http://www.sjbhealth.org/body_childrens.cfm?id=1012

2009-12-13T08:27:00.000-08:00

Hi everyone! I hope the start of the holidays have been good for you. It's hard not to get sucked into all the shopping craze that is going on now, but I've been good so far. Some wonderful news. A recent clinical trial study has opened up for children with CP who are under eight years of age. They will be using stem cells to try to get some improvement with the children. The stem cells are harvested from the hip bone and introduced to the spine (just as we did in Germany). The second part of the good news is that Sarah has been approved to enter this study as of Friday! We will be traveling to Mexico (where this trial will be conducted) sometime in late Jan or the first week of Feb. We will have to travel twice more for follow-ups (30 days and 180 days later). I'm so excited for Sarah as hopefully this will show a little more improvement in Sarah. I have included some links on the left side of the page, in case anyone is interested in this trial study. All hospital fees and doctor's fees are paid for by the study. We just have to come up with the cost of flying there three times and the materials fee that they use (about $4,000 US). Please keep Sarah in your prayers as we embark on this trip.

2009-10-31T17:33:00.000-07:00

Some of you have emailed me to ask about what kinds of things are done during a Therasuit session. I took more pictures of Sarah to help give everyone an idea. In this picture, Sarah is in the suit and standing up against the wall. She can stand up for 18 minutes (with crying and trying to squat to sit down). Slowly they are adding more minutes. Each child will start at a different pace with different goals.

2009-10-31T17:28:00.000-07:00

Hello everyone! Happy Halloween!

Sarah did much better on days 4 and 5 in therapy. Even though she cried from the start, she did all of her work and then some. Today, she's much more relaxed, because she got to spend the day playing and then diving into her Halloween candy.

Sarah was a fairy princess and went around to get candy in a little red wagon. Her wonderful speech therapist got a switch (a button device where you can record a short sentence) and recorded "Trick or Treat" and gave it to Sarah. I showed Sarah how to press the button and put candy in her bucket. As soon as she learned that pressing the button brings about candy, she kept pressing and the pressing the button even before we made it to the next door.

2009-10-28T16:31:00.000-07:00

Day three of intensive physical therapy proved to be too much for me. Sarah cried her little heart out within 20 minutes of starting the session. The therapist asked me to leave the room because it seemed that when Sarah could not see me, she was doing what was expected of her (and more). Yet as soon as she caught a glimpse of me, she would stop working. Either way she had tears running down her little face, so I stepped into a little closet room in the center. I sat there for the remaining two and half hours listening to her cries and protests. It felt like time would never pass. As soon as it was all over I got a wonderful progress report. Sarah did more work than expected at this point in the therapy. As soon as I picked her up, the waterworks ended. That let me know that there was nothing wrong with Sarah, except her hatred of doing any exercises.

Sarah came home, ate lunch and took a nap. As soon as she woke up, she wore her fairy princess Halloween costume and she was off to the first of four Halloween parties she has been invited to. It was a great break for Sarah, who got lots of candy, carved a pumpkin, danced, and listened to Halloween stories. She sitting now, watching the Daily Show with great intensity (she either gets Jon Stewart on a different level or she's giving him dirty looks, its hard to tell). I wonder if she knows she's going back to therapy first thing in the morning.

2009-10-27T10:14:00.000-07:00

Sarah has fallen into a deep sleep this afternoon. At her session today, she figured out how to not do her work. The therapist would have Sarah lifting some weights in a certain motion with her arm and Sarah would just let that arm hang instead of going through the motions. I wanted to laugh a little, but it was frustrating because she was wasting time instead of working. Afterward, she was put on a treadmill to walk and then worked on standing up against the wall.

She will be sore starting tomorrow but I hope this will all bring about some good results for her. We'll just have to wait and see what will happen in three weeks.

2009-10-26T15:55:00.000-07:00

Here's Sarah crying while doing something called "Dead Lifts". The braces on her legs keep them straight (as she has a tendency to bend at the knees). She has to go down and touch her toes and then come back up, while her legs are straight. Even though she hates them,

she can do 90 reps quite quickly and with little assistance.

2009-10-26T15:44:00.000-07:00

Sarah's first day in intensive physical therapy was...well..interesting! She did pretty good for the first hour and half, but after that, she spent most of

it crying. I think it had to do with the yellow suit she was wearing. It's fitted with many large rubber bands that provide resistance. Sarah always hated any constricted feeling, but at least she did all the work that was asked of her. The crying was nothing to really worry about. As soon as the session was over, her crying stopped as if I turned off a switch. A couple of cookies later, and she was as happy as a clam. In this picture she's in something that is called the "Spider". The bungee cords attached to the cage-like walls on either side force Sarah to stand-up. This position is great for squats and other stretches.

2009-10-19T20:57:00.000-07:00

The big day is about to come up on Monday. Sarah will be starting intenstive physical therapy that uses the Therasuit Method. I'm excited as well as nervous about what is to come. This therapy involves putting Sarah into a bungee-like suit and attaching it to what is commonly called "The Cage". The suit and bungee cords act as a resistance to Sarah's tight muscles and help her 're-learn' normal range-of-motion skills. Unfortunately, this is a three-hour long session. There are five sessions a week for a period of three weeks. She will be done November 13th. I've decided to purchase a set of ear plugs for each therapist that will be working with Sarah. Normally, Sarah does a great job in therapy even though she feels the need to get angry with the therapist...but she still does her work. I'm hoping there won't be a complete meltdown next week. Some of you guys have emailed me, asking about the Therasuit Method, so here's a link to the main site...http://www.suittherapy.com/ Many local therapists are trained in this method so you should just ask around to find someone who can do it locally (if you are interested).

2009-09-25T09:21:00.001-07:00

Wow everyone! I cannot believe its been so long since I updated this blog. Sarah is doing wonderfully well. She has gained some new skills since her trip to Germany. She has now learned to feed herself sandwiches and pizza slices. Sarah has started Pre-K and is picking up so much from the other children, including an attitude LOL! Sarah is going to be starting something called Therasuit therapy. She will do therapy everyday for three hours. This will last three weeks. Many children have gained much needed skills after a few sessions of Therasuit, so she will be giving this a try. Sarah will start October 26th and I'm waiting for the crying sessions she will have there. Here's an updated picture of Sarah. We took this last week when Sarah got a new baby doll to play with. She fell in love with combing this toy's hair.

2009-07-01T02:19:00.001-07:00

Hi everyone! We are back home in Tampa! The second part of Sarah's procedure went great. Sarah had 44 million stem cells that were extracted in the first part of the procedure. The doctor was amazed at the number because the average is about 3 million. Hopefully this is a good sign of what's to come for Sarah. The second part of the procedure literally took 10 min before Sarah was wheeled out into recovery. She did spend three hours there just to make sure she was 'good to go' from being put 'under'. The rest of that day was ok, Sarah vomitted a few times but that was to be expected. The second day, I put her on the BRAT diet and she did quite well. On Friday, it was food as usual for her with no issues.

There are no scars, bruises, or anything from the procedures. Now, time will tell if this has helped Sarah or not. Please keep us in your prayers and I will post any updates on Sarah as soon as they happen. Thank you all for your support.

2009-06-23T03:07:00.000-07:00

Hi everyone! The first part of the procedure was a success. Sarah was in the hospital for a total of two hours. We first went in and met with the physician and filled out quite a bit of paperwork. Then they took Sarah and put her 'under'. The procedure took half an hour and then she was out in the recovery room. Sarah was quite upset when she woke up. She cried for about an hour and then went back to sleep. Other than the IV staying in her hand until Wednesday, she's doing fine. We came back to the hotel and had dinner. Sarah ate two slices of pizza, some cake, and juice. Meaning, she was back to her normal self again. Today we will go out and look around. The physicians said that after Wednesday's procedure, Sarah will need to lay down for two days, only getting up to eat. So we will be in the hotel for two days straight. Thank goodness for 3 seasons of the Simpsons!!

2009-06-16T12:17:00.000-07:00

Hello everyone! Posting from Denmark today! We missed our flight from Newark, NJ and had to wait until the following evening. We arrived on Monday at 10am in Zurich. After renting a car, we drove up to Frankfort and Sarah's dad's cousin (Who lives in Denmark) had come and forced us to come up for a visit. Since we still had a few days left before the procedure, we drove up. It was so beautiful. The best part is that Sarah is still jet lagged and decided to sleep the entire way. We took a few pictures in Denmark and we are hoping to get to the statue of the Little Mermaid. The real Little Mermaid by Hans Christian Anderson. If we make it there, I'll post pictures. Nothing else to report, Sarah is doing great (knock on wood), but its a bit cold here. We got her a jacket and a few long sleeved shirts.

2009-06-14T04:38:00.000-07:00

Hello everyone. Well I'm posting this from a hotel in Newark, New Jersey. Yup you read right. We should have been in Germany about two hours ago. When we left Tampa, we had to sit on the runway for over an hour. Then our connecting flight to Europe left a little early. So I had Sarah in one arm and two handbags in another...running.....but the flight had already left. The kicker was that there was a few connecting flights but they were sold out. The next flight is today (Sunday) at 6:45 pm. We have to check out of the hotel at noon so we'll be walking around the airport for 6 hours...I hope there's tons of shops to look at. Anyways, hopefully this is the only bump in the 'road'. The only one laughing last night was Sarah.

2009-06-10T13:58:00.000-07:00

Hi everyone! Well we're getting ready to leave on Sat. I can't believe its almost time to take Sarah to Germany. We're just packing everything and getting all the finishing touches done. Thanks to everyone for your continued support. I'm just asking everyone to pray for Sarah. I'll be posting updates from Germany as soon as they happen.

2009-05-23T05:52:00.000-07:00

Hi everyone! Well, we are starting to organize what we will be taking with us to Germany. I'm also planning on video taping the whole trip. First, I will take the camera into Sarah's physical therapy sessions right before we go. I'm going to see if they will let me record the procedure when we get to Germany. I think it'll be good for Sarah to see the whole thing when she gets older. Yesterday, Sarah had an EEG done as the 'before' EEG. She has another one right when we come back (July 1st). Hopefully we're able to see SOMETHING within that short period of time.

2009-05-09T18:50:00.000-07:00

So we are about a month away from leaving for Germany. So many things have happened with Sarah. First, she has learned to pick up crackers (and cookies!) and feed herself. Even if the cracker falls onto the table, she will pick it back up by herself and continue eating. It has been amazing watching these skills just pop through within a matter of days. She's really trying hard to do things on her own. The picture here is of Sarah playing with her toy piano. She is actually sitting on a little chair and playing at the table all alone. She is able to balance without back support and keep her back straight while playing for about 15 minutes. That was quite hard for her to do only a few weeks ago, and now its almost second nature to her. Of course, the table and chair have to be Elmo or else Sarah would have a fit.

2009-04-20T19:42:00.000-07:00

Alright everyone! The dates have been set and the tickets have been BOUGHT!! We will be going to Germany on June 14 and returning on June 28...very late at night. It'll be about two weeks all together. We wanted Sarah to relax a bit before everything and then (of course) after it was all over. I'm going to get her all that tasty European chocolate. That girl loves any type of chocolate, but I'm sure she'll fall for the German kind. Maybe it'll make her feel better between procedures. Everyone, please pray that everything goes smoothly for Sarah. I know most of already are, but keep them coming.

2009-04-12T10:49:00.000-07:00

This is Sarah playing with a Nintendo Wii at the store. I think she started to get the hang of what she was doing, because she would move the controller in the air and then stare at the TV screen to see what she did. I've heard a lot of physical therapy offices started to use Nintendo Wii as part of therapy. Sarah's therapist has gotten one for the older kids, but I think she might want to try to have Sarah use one. She already seems to get the hang of it more than I can!

2009-04-12T10:33:00.000-07:00

Wow! Everything is starting to really come together. We've set aside most of the money that is needed for the whole procedure (thanks to everyone who gave!) and we are now looking at airline tickets. We'll be moving to a new place on May 1st which will be wonderful for Sarah. It'll mean that we won't have to carry her up and down the stairs anymore because its all ground level. I'm planning on taking the video camera with us and documenting the whole thing. I'm not sure if they'll let us into the operating room, but if they can (or there's a window to the room) I'd like to tape the whole thing. I'm trying to get more media exposure about this for others. I'm sure there are many who have CP or children with CP who might be interested. I've emailed and contacted many of the local TV stations, but I think they have their hands full with other stories. Its too bad because I think this can be useful information to others. This is why I figured I'd tape it myself, perhaps sometime in the future it can help someone else. If not, it'll be great when Sarah becomes a teenager. As soon as she starts with the "I hate you and wish I was never born" phase, I can always pull out the DVD of the procedure. See...I'm already thinking ahead. All you parents out there know what I'm talking about!

2009-04-05T03:57:00.000-07:00

Well we've been told that Sarah is a good candidate to go, so we have set our appointment for June 22. That's the date...We will be going a couple of days before, just to get settled in. The whole thing will take about a week, but we have decided to stay a few extra days afterwards in case Sarah is not up to flying right away. (Or we might pay extra and get tickets that we can change the date with no penalty).

2009-03-27T15:05:00.000-07:00

We took Sarah to a petting zoo recently. We were very surprised she wasn't afraid of the goats. Sarah's dad is helping her stand while she pets the goat.

2009-03-27T14:48:00.000-07:00

Wow! Its been almost two months since I wrote an update but tons of things have happened since then. We talked with a few specialists in the area (such as neurology) and they all felt that the risk for Sarah going to China was too high. Between donor stem cells running the risk of rejection plus the full month of treatments, it was just too much. But when a door closes, somewhere a window opens.

A physician family friend mentioned the X-Cell Center in Germany. We researched that facility and found that they use the person's OWN stem cells. Everyone has stem cells in close to their bone marrow in their hip. The older you get, the poorer the quality of those stem cells are. Thank goodness Sarah is only 2 1/2 so, in theory, her stem cells should be good. They then re-transplant them close to the damaged area of her brain. When I read this part of the procedure, we contacted one of the top bone marrow transplant doctor in the area. She looked at the information as well as Sarah's record and explained the whole thing to us. And since they are only using her own stem cells there should be zero rejection.

Now the good news. After sending Sarah's medical reports and MRI images, it seems that Sarah is going to be a good candidate. Now we have to sit and figure out when a good time to go is. Yes, we can go as soon as 5 weeks!! But we haven't decided yet exactly. Oh and its going to cost $12,000 as opposed to $40,000 in China. That's probably because we'd be in Germany for a week as opposed to 1 month with China.

2009-01-11T19:53:00.001-08:00

As you can see in the picture, Sarah's only way of getting around on her own is with a special walker. However, we still have to put her in and take her out. Without this walker, Sarah would have no way to move. She is unable to crawl or even pull herself up to stand.

Sarah's dad and I would like to give Sarah the chance to do this. Stem cell treatment is a wonderful new advancement that has helped hundreds of others just like Sarah. We are now asking your help. The cost of this treatment will cost almost $30,000. Unfortunately, insurance companies do not pay for these treatments, especially since they are out of country. We are forced to come up with at least that amount before we would even we could even leave to China.

We are asking for your help. I understand that many of us have been hit hard by the economy (as I have been laid off as well). We're not asking that you donate to us your life savings, but just a dollar. If each person can give just one dollar, we can be closer to getting our little girl the help that she needs.

Her trip might be the gateway for others to follow and perhaps for the United States to increase the advancement in this field so that others can be treated at home and under their health insurance plans.

I want to thank you for taking the time to read this and for giving. I will be posting updates as quickly as possible so that you can all follow Sarah's journey. The PayPal donation button will always be up on our site, if you cannot give now perhaps you know someone else who can.

2009-01-11T15:29:00.000-08:00

Hi! I'm Sarah's mom, Lina. I've set up this blog to help document Sarah's new journey. Let me start and share some of Sarah's history with you, just to get you up to speed.

Sarah was born almost 2 1/2 years ago in a small Iowa town. When Sarah was born, they discovered a large blood clot in her brain. We were very luckily that this was caught and with a 4 hour surgery, the blood clot was removed. Sarah was sent home after 3 weeks in the NICU. Unfortunately, Sarah suffered much brain damage that she was diagnosed with cerebral palsy and epilepsy. At 2 1/2, she is unable to walk, talk, crawl or feed herself. However her beautiful smile and loving gestures make all the extra work we do for her worthwhile.

This is the start of Sarah's journey for some type of recovery. Sarah's dad and I have been researching stem cell treatment for CP. At Duke University, they were able to use stem cells from banked cord blood (this is blood that was saved during the delivery from the placenta) to help those children with CP. Many were able to talk or walk for the first time. However, I never saved Sarah's cord blood so we had to find something else.

A few months later, I was lucky enough to watch a TV show that showed a woman and her daughter who went to China for stem cell treatment. After watching the show and researching the Chinese hospital, I decided to find out more. I contacted the hospital in China, as well as other parents in the US who have taken their children to the same hospital for stem cell treatment.

After much consulting with Sarah's doctors here as well as the experiences of other children, Sarah's dad and I have decided we would do this for Sarah. Even though, most likely, she won't be a typical child after all this, her chance of having a better quality of life is great.

We have started this, so we can share Sarah's experience with everyone. Perhaps some of the information we learn along the way can help another family going through this.