6-Month Neuro Follow-Up Complete

Today we had our 6 month neurological follow-up for Raquel.  Dr. Mower was happy with how she was doing, happy about her "home hospital" academics and pending weekly physical therapy sessions.  He also put in the referral for another speech evaluation so we can get that therapy started as well. The more therapy at a young age the better.  I'm a big believer in that.

He also was pleased that the MAD (Modified Adkins Diet) I have her on has seemed to decrease her seizure activity.  I have literally eliminated all of the bad carbs/sugars that the Keto Nutritionist requested I do, as hard as that was and continues to be. But I honestly can say that I feel it has made a huge impact in Raquel's health. The last seizure she had, I truly feel was due to her inadvertently consuming some foods and drinks she wasn't supposed to have.  Dr. Mower felt that it wasn't a coincidence either and wants me to continue what I'm doing diet wise.

Then there was music to my ears:  Dr. Mower said we could start reducing medication.  I am so happy!!!  Of course it will be a gradual thing - only 1/2 a pill a day less right now (she currently takes two anti-convulsants totalling 4 1/2 pills) - and then we will see how she responds. Could be few days or a couple weeks to really tell if she can tolerate the reduced meds but if she can, and I think she can, we will continue the weaning process.  Just being to the point right now where we are even talking about this makes all the diet sacrifices and challenges well worth it.  

I do have one bit of sad news ... our treasured Dr. Mower is moving to Northern California so today was our last visit with him.  So bittersweet.  I can't even begin to describe my emotions.  Raquel has been under his care for three really difficult years. We've had countless visits, ER trips, hospital stays, tests, tests, and  more tests under his care. He has made himself so readily available to me - through phone calls, emails, hospital check ups, etc.  I always felt as though Raquel was his only patient, even though I knew that was never the case.  He is just that great of a doctor.  

He told me to keep being strong, to keep doing what I know is best for Raquel, and to stand up to anyone who thinks different.  By that he meant new doctors, therapists, teachers, school districts, etc., not to cave in and do what they say if I don't feel it's right for her.  I'll continue to make him proud. He's taught me so much, and I'll continue to grow from his guidance.

He also had really kind words to say to Gabby.  You have to realize that Gabby has maybe missed two or three appointments during this process as well, so he knows her more than most and has watched her grow and mature. He praised and praised her for what a great big sister she is, how compassionate she is, and to keep on doing that. She was teary all the way to the parking lot, but so was I.  When we got to the car, she put on her earphones and started listening to music.  After about 20 minutes, she stopped and said:  "Mom, I know we're really sad but it's okay.  We had him for 3 years and now other kids just need him more." And she is absolutely correct.

Introducing Dr. Andrew Mower.  I told him I was doing this so it's okay that I publish his picture.  Hats off to a truly amazing pediatric neurologist.  He will be genuinely missed.

I'm Baaack.....

It's obviously been a long time since my last post so I have lots to report - and pictures to share!!

Raquel continued to have "home hospital" for the remaining part of the school year.  She has made great progress working one-on-one with Miss Crystal, her kindergarten teacher.  She is getting stronger - using her legs more and developing some upper body strength. Her big sister Gabby continues to be a huge support - and often doesn't even give her a break from working.  Here they are at the table, in their pajamas, picking items to work with.  Gabby didn't give Raquel a chance to eat or drink anything before setting the table up this day.  Raquel literally woke up, started to come out of her bedroom, and Gabby redirected her right back in to "start the day out right".  Raquel loves having quality time with her sister and didn't put up a fuss.  This day, that is...



Crystal has been such a wonderful addition to our family.  She has not only helped and encouraged us all, she has also introduced me to a mother that uses the iPad program with her son. We now are playing around with a few of these applications.  On one of them, Gabby has taken pictures of Raquel's favorite items, then records sentences in her voice so when Raquel pushes the button, it will say, for instance, "I want some juice" or "I want to play with my sister."  We will have fun with this over the summer months.  This program is just another way to incorporate PECS, but with the touch screen, the response is immediate.  And I really love that Raquel gets to hear her sister's voice saying what she wishes she could say.

Now that summer is upon us and school is out, we did experience one big milestone:  kindergarten graduation.  I am so happy we were not only invited to the ceremony but also that we were able to attend.  Graduation was a little bittersweet.  I was so proud of Raquel and the accomplishments she's made and how far she's come.  But at the same time, I really wish she was up on that stage able to sing and dance with the others (the special needs classes were to the side). But the school made graduation really special, and I never felt like Raquel was isolated, just kind of there watching the others have fun.

Here is my graduate, in her cap and gown.



Here she is with Miss Crystal.  We are hoping she can continue in-home academics over the summer if the district allows it.  I should know about that this week.  If not, Crystal also teaches swim lessons, which is something I would really like Raquel to take, especially considering how much she loves water.




Another special event was running into our beloved Miss Sara, Raquel's preschool teacher, while shopping at the mall.  I've stayed in touch with her, but it was sure nice to see her in person.  I look forward to spending time at the beach with her and her beautiful family this summer.  She has a daughter Gabby's age, so they always have a lot of fun when we get together.



As far as the Keto Diet goes, well, that's still a work in progress.  I pretty much consider her on a Modified Adkins Diet at this point since her nutritionist continues to be missing in action.  In all honesty, the adjustments I've made to Raquel's diet - some were quite drastic - I feel are really working on the seizure front.  I've definitely noticed a decrease in them since we started this, and am feeling pretty optimistic.  Hopefully come June 27th, Dr. Mower will start a reduction to some degree in the meds so we can see how much of a role that is playing.  Often, Raquel appears to be so overly medicated it breaks my heart.  But at this point, I think I would prefer this to her having daily seizures where she can end up in ER again.

Here's me and my girl.  I love her so much.  I would have to say that 90% of her abusive behaviors towards me (the biting, head butting, scratching, hair pulling, etc.) are gone.  I am able to tell when she's getting aggitated and needs some quiet time, and I think that she is just maturing and outgrowing a lot of these behaviors.





Today we went to Children's for her physical therapy evaluation.  We were supposed to have this a couple months ago but it was rescheduled to today.  I absolutely love "The Castle", their new facility up in North County.  It's a pretty happy place.  As with anything I've experienced with Rady Children's Hospital, everyone was awesome, from the staff greeting you at the front door, to the specialists evaluating you, to the actual facility itself.  I was ready to jump into the ball pit!

Miss Lucy did our initial evaluation and could possibly be Raquel's therapist. I requested weekly sessions and looks like she will be getting that.  Now it's just a matter of them writing up her PT goals and fitting her into the schedule. One of the main goals is increasing her walking so I don't have to carry/lift her as much as I do now. Lucy said this was a huge red flag because she will continue to grow and get heavier, and I will ultimately get hurt trying to do what I've been doing.  Obviously the low-tone has to be addressed because Raquel just can't do all the physical things that people take for granted  but Lucy plans on implementing a few things to help get this going. The day Raquel can climb into the bath unassisted will be a wonderful day!

Here is Lucy explaining to Raquel what they were about to do...



And Raquel standing on top waiting to jump into the ball pit.

Crawling to Lucy.

Then taking a bit of a break. I thought she might fall asleep at this point, actually.  Her medication was starting to kick in about then.

I was very proud of my Rock Star today.  She worked  hard, but remained calm and happy.  I am really looking forward to getting the PT going and building more of her strength and endurance.