Just an update

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.

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.

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.

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.

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.

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.

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!

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.

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).

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.