A helping hand

This week will begin the long road of support services for Grace. These include Physical Therapy, Occupational Therapy, an Infant Development Specialist and a Speech Therapist who specializes in feeding and swallowing. As a vendor ourselves for the Regional Center, we've been fortunate enough to choose our own case worker and the therapists who will be working with Grace. All of whom are very experienced and making accommodations to add her to their caseloads. I don't think we could of picked a better team of clinicians to service our daughter.

On Monday, we also met with two highly regarded neurologist, Dr. Asaikar and Dr. Chretien, who specialize in pediatric neurological disorders. Dr. Chretien will be our primary physician between the two, but due to the unique nature of Grace's diagnosis both doctors will be consulting with each other throughout her treatment. Dr. Chretien is more of an on-hands doctor who has a wonderful bedside manner and comprehensible way of explaining things. Dr. Asaikar on the other-hand seems more analytical and systematic in his approach. We were told by a nurse at Kaiser that Dr. Asaikar is a brilliant doctor who can look at a patient and identify the issue regardless of other supporting evidence such as labs, EEG, MRI, etc. And based on our initial experience with him I'd say that's true, he's kinda like the Seizure Whisperer. He had a very unorthodox way of examining Grace and coming up with his own ideas regardless what's been identified before. They want to look again at NKH (Non-ketotic Hyperglycinemia), which is something Holly and I felt she had a long time ago but her labs didn't support that diagnosis. And they are also considering EIEE or Corpus Callosum. I hope to get a copy of the MRI done while she was hospitalized so they can take a look at it. For us, it's all about having a second and third pair of eyes looking at everything.

How things will work with them in the future is unknown. Since they're not part of the Kaiser system, we had to pay $350 out of pocket for the consultation. They will be contacting Grace's primary neurologist, Dr. Friederich to inquire about what tests were done and the results. They may also ask Dr. Friederich to order additional test they see fit. So if he's cooperative and receptive to doing that, then I can see all three neurologist playing a role in Gracie treatment. As Dr. Chretien put it, they view rare cases like Grace's as a Fascinoma, which is medical slang for a fascinating case. So we're hoping they will take on the case at a reduce fee due to the unique nature of it.

We also had Grace's third EEG done on Monday. As expected the results were the same. She had no seizures during the test but as soon as it was over and they removed the electrodes she had one. Honestly I don't think it would of made any difference. It doesn't change the diagnosis or treatment plan.

Her seizures appear to be continuing but they're becoming harder to recognize. Due to the Topamax, an anti-convulsive, it's harder to see them now. You really have to be focusing on her face and eyes to truly see what's going on. But just because they're not presenting as they did before doesn't make them any better. They're just manifesting in a different way now.

Her alertness level has been good and she's gaining weight. I haven't told Holly yet, but she broke 9 lbs. today. So physically she seems pretty healthy.

We also learned of a disheartening complication yesterday called SUDEP (Sudden Unexpected Death in Epilepsy). It is essentially like SIDS, but in her case it would be due to the seizures. It means that there is a chance she could have a seizure and she wouldn't be able to recover from it and die. As you can imagine this was very hard for Holly and I to hear and just added to our overall stress level. It served as a sad reminder to enjoy every day we have with her.

One Good Thing

Yesterday was tough. We spent the entire day painfully watching Grace having about 2-3 seizures per hour. In addition, it took us an entire day to finally get a new medication (topiramate) that we are hopeful will help lessen the amount of seizures she is having. We have no idea why she has suddenly gone from 2-3 per day to this high number, everything just seems so random and disorganized. Her seizures are now also sometimes presenting differently as well so that poses even more questions...luckily, they are still rather short in nature, however they are now happening not only during awake times but they are also waking her up from a restful sleep. Needless to say we had to cancel her physical therapy appointment to focus on getting the seizures under control.

As we were walking last evening, I told Brien how I was trying to see the good things in every day. It was hard to find a good thing about yesterday. Then, I remembered that in all the turmoil of the morning's events, we got a call from the Children's Wish Foundation in Atlanta, Georgia. When Grace was in the hospital, a Child Life Specialist decided to nominate her to receive a gift from their Young Minds Program. A couple weeks ago we finally got around to filling out the paperwork and turned it in. A nice woman named Nina called yesterday to tell us how much Grace's story had touched her and that in a week we would receive a UPS package full of toys for Grace from them. Again, just another example of the kindness of strangers and we are so thankful that this foundation exists and that they chose us to receive such a special gift. You can read more about them at their website and maybe even decide to help them in some way.

http://www.childrenswish.org/

The other side of the system

Here's hoping today will be better. Lots of changes starting today. In addition to her new medication, we will be starting physical therapy and also child development services through Easter Seals. For Brien and I being on the "other side" of the system is truly an eye-opening experience. As a therapist myself, I feel that although I know a lot about communication development, I also know that there is a vast amount of knowledge out there still to learn, and am hoping the collaboration with other professionals will only further that knowledge and help us both personally and professionally in better helping the children we serve. Perhaps that is one of the many reasons why Grace is here for us.

So far, as a parent, I have not lost faith in "the system" as every referral we have received has been processed in a timely manner, the professionals have been prompt in contacting us and very responsive to our concerns. Of course, it helps that we know a lot of the "ins and outs" since our business is a part of the system. It's been very difficult at times to step out of the "therapist" mode and into the "parent" role but I am trying and have the utmost faith in all of the professionals who will help us through Grace's Journey. We have every hope that she will continue to make progress with her baby steps.