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.

Another tough day

Today was another bad one for Gracie. Her seizure activity has continued to increase since Tuesday. I've gone from tracking how many seizures per day to how many per hour. It seems like her previous triggers no longer apply. No pattern seems to exist. It's just mayhem. 

The worst part of witnessing her seizures is how helpless you feel. I've never felt so out of control. All I can do is rub her belly and tell her how much I love her. I must repeat "it's ok" and "I'm so sorry" a thousand times when she's having one. It's such a horrible and heartbreaking experience to watch. 

Tomorrow we'll be starting her on Topiramate (15 mg.) which is an anticonvulsant. It works by decreasing abnormal excitement in the brain. Hopefully this with the increase in Keppra will help. 

In the meantime, we'll continue to take it day by day and hope to get a handle on the seizures soon.

Gracie's Naps

Today, when I got home from work, Gracie was awake and alert so I opted for hanging out with her rather than catching up on writing reports or checking work emails. Gracie loves music so I often use this as a tool to entice her to communicate. I’ll sing a few bars then wait and look at her expectantly for her to send me some signal that she wants to hear more. Sometimes she’ll look at me, sometimes she’ll move her tongue, and sometimes, if I wait a little longer, she may make a little noise.

I’m never totally sure whether her communication attempts are intentional or not but I try and reinforce them constantly in hopes that one day they will all be intentional. Today, she had three seizures while we were singing Old MacDonald. I think at times when her brain is working hard such as when she’s trying to communicate she also has more seizures. In contrast, when she’s sleeping very peacefully, the frequency of seizures drops drastically. Thus, you see the Catch-22 that we have here. She has to be awake, alert and interactive for her brain to grow and develop, but we also know that the seizures maybe causing brain damage, however the jury is still out on that one. Her neurologist explained that there is great debate in the field when it comes to that issue.

What we do know is that from birth, Gracie has been a very sleepy baby. There are days where she can sleep the entire day away and then the next day she may be awake all day with no rhyme or reason. Right now, we haven’t figured out a pattern or routine to her sleepiness and Brien keeps telling me I need to just stop trying to pinpoint a cause for her behavior on this day versus that day and just accept that those ups and downs are a part of who she is, and part of what makes us love her.

We often comment that she looks very peaceful when she sleeps and who doesn’t treasure a moment of peace? So, this week, rather than worrying about how much she is sleeping, I have chosen to celebrate Gracie’s sleepiness by taking a nap at some point myself. I’ve never been a “nap person” but this week, for Gracie, I will try and sneak one in at some point. She suggests you try and do the same!

One step forward, two steps backwards

That's pretty much how I feel sometimes. We can have a few "good" days to only be followed by a few bad days. Yesterday was one of those days. Gracie had 12 seizures yesterday, which is a drastic increase over her baseline of 2-3 seizures per day. This morning alone she's had 3. We're not really sure why, but then again that's par for the course.

I contacted Dr. Friederich this morning and he wanted us to up her Keppra to 2 ml twice a day and give her some Lorazepam to calm her down. He said if the increase in Keppra doesn't help we might have to look at switching her meds, which more then likely means giving her Phenobarbital.

So far she's been resting comfortably since her morning meds. So we'll see what the rest of the day holds for us.

What a month!

I can't believe it has been two months since Grace was born. But it's really been this last month that has been so profound.


While taking this picture I couldn't help but think about how much has transpired since we took her "1-month-old" picture. It was only a couple days after that picture was taken that she was admitted into the hospital. Since then our lives have been changed forever and our priorities re-written.


Today, Gracie is doing much better. Her alertness level is significantly better then it was a month ago. She has gone from being alert 2-4 hours a day to about 6-8 hour a day. Her eye contact, tracking and imitation has also improved gradually. But perhaps the most notable improvement has been with her weight. At 1-month-old her weight had been hovering around 6 lbs. 5 oz. As of this morning she weighted in at 7 lbs. 14oz., a one and a half pound improvement in about 4 weeks. I think the increase in nutrition has certainly helped her thrive.


Last week her neurologist, Dr. Friederich, saw her. He was pleased with her alertness level, tracking and muscle tone. He told us he doesn't normally order frequent EEG's because of the expense, but in her case he wants to follow them more closely. So she'll have another EEG on 9/27. Fortunately for her, the most uncomfortable part of it is mommy and daddy trying to get all that gunk out of her hair afterwards.


She also saw her pediatrician, Dr. Wang, last week. She too was very pleased with her development. We increased her feeding volume to 90 ml. (3 oz) every 3-hours and a teaspoon of fortifier for extra calories. She also got her 2-month immunization shots and we both got flu shots. We also went to the lab for a blood draw to check her CO2 levels. They are still elevated, but not at dangerous levels. And like I've said before, her body is compensating for it just fine. Her oxygen saturation continues to be just fine even when not on the oxygen. At this point we're mainly putting the oxygen on overnight at .25 liters.

Grace has also been accepted into a research project on Infantile Spasms at Washington University School of Medicine in St. Louis. Per our request, Dr. Friederich found this research study and felt Grace would be an appropriate candidate for it. After speaking to the director, Dr. Paciorkowski, we decided to enroll her. 


Infantile Spasms is a type of epilepsy that affects children under the age of two years. Affected infants develop a particular type of seizure. These seizures look like the baby is trying to do "sit-ups" or "crunches". Sometimes the baby may bend his or her arms and legs in, sometimes the baby may throw his or her arms or legs out.


Even though Grace doesn't have Infantile Spasms, in some cases Early Myoclonic Epileptic Encephalopathy (EMEE) can lead to it. So she will be part of this study for several years to see if her condition transitions to Infantile Spasms. Although it's unlikely she'll benefit medically from her participation, it will help further the research into this area which is largely unknown. What we will benefit from the most is the knowledge and discoveries made following her. The researchers will be conducting their own DNA testing and studying her EEG's. So for us, to have a team of experienced researchers following her will only add more value to what we're learning from her local doctors.

Last week Grace also got to spend some time with her grandparents who drove up from La Quinta to see her. I think it was a very touching time for them to see and hold her. It's been a long time since grandpa held a baby.


As for Holly and I, we're doing OK. We're still trying to adjust to having a baby who requires so much from us. I think the most difficult thing is the lack of sleep. Due to Gracie's frequent feeding schedule we're only in bed at the same time for about 3 hours a night. I think for us it's a big juggling act between our business responsibilities and taking care of Grace. Last week I had a finance meeting with our CPA and Holly was busy seeing clients. So I took Grace into the office with me. Fortunately, she slept through most of it, who wouldn't. And that juggling act is going to get even more complex when escrow closes on our new office and I have to manage the daily activities of our tenant improvements. 


But even with all of these challenges, we're in high spirits and enjoying our time home together. No matter what issues we face, being home with Grace is always in the forefront and what brings us the greatest joy. We don't dwell on the "what-if" or feel sorry for ourselves. If anything, we feel grateful to have such a beautiful baby who we can shower with love. We continue to receive cards and gifts from people all over the country who have been touched by Grace. Some are friends of friends or church acquaintances we've never met. It's truly so humbling to get a card or gift from someone you've never met sharing their words of encouragement. You'd expect to hear that from a friend or family member, but a stranger (if you can call them that) is truly uplifting. So thank you again for your continued support.

Silver and Gold

Audrey and Russ Jones visiting Grace

This week the song lyrics “Make new friends but keep the old, one is silver and the other gold” are resonating with me. I remember singing this song often as a youngster in the Girl Scouts. We would hold hands in a circle and always sing it at the close of each meeting. It was one of my favorite things about being in the Girl Scouts, this ritual was very comforting and I always looked forward to it. This week, I’m writing about you, because whoever you are, we consider you a friend of ours and a friend of Gracie’s.

The response to our blog, as well as Gracie’s situation in general has been so heartwarming and overwhelming for us. My concern is we don’t always have the time to thank everyone one of you personally for your kind words of encouragement, support, love, and guidance. I’ve tried to send out thank you cards whenever I can, but this is a never-ending process. For that though, I am very grateful!

Thus, this week I am going to try and attempt to thank old friends and new. I am grateful for all of our friends and family. I am grateful for old friends from high school who have written me. Some of these friends I hadn’t talked with in almost twenty years, and some I never talked to back in high school. I am grateful for meeting the wonderful hospital staff at Kaiser Roseville and the excellent tender loving care they provided for our family. From the nurse who took the time to hold Gracie while we were gone, to her big, husky ICU doctor whom she almost brought to tears, their impact on us will last a lifetime. I am grateful for all of our new friends and old. You know who you are.

So, in honor of Gracie, and us meeting so many new friends, as well as reconnecting with old friends, she asks you to do the same this week. Make a new friend for yourself or reconnect with an old friend. It could be someone new that maybe that you see every day in passing but have never spoken. Or, it could be someone on my Facebook page who looks friendly! Send a message to an old friend or, better yet, call up and old friend just to see how they are doing. Remember some more lyrics from the Make New Friends song, “A circle’s round, it has no end, that’s how long, I’m gonna be your friend.“

Laugh at Life’s Little Annoyances

Recently, one of our friends called Brien offering to help us in any way that he could. This seems to be a regular occurrence for us and we are so very grateful to all of you for your love and support. Our friend mentioned that he had recently received a speeding ticket, which normally would have annoyed him. However, in thinking about Grace he just had to laugh about his own mishap. In the grand scheme of life, a speeding ticket was actually pretty humorous. I think maybe Grace had reminded him that he has a great life which includes a loving wife, as well as two very beautiful, and healthy, children.

Last weekend, Brien was attempting to replace the faucet in our guest bathroom. He tore out the old one and took everything out from under the sink. Our faucet was very old; probably the original one that was put in back in the eighties and the new one he bought didn’t quite fit the sink. Thus, after several painstaking hours of trying to figure out a way to install the new one, he finally gave up and called the plumber. For Brien, I think this was pretty annoying for him; he’s normally very handy around the house and loves to fix things himself. He gets a great sense of accomplishment from these types of things and also loves that it saves us money. I love that about him, the motivation to do things yourself because you know you can do it right is a great quality to have. I just had to laugh at the sink situation and realize that although we lost use of the sink for a day or two and had to pay more for a plumber, this was really just a little annoyance that we could laugh about. Guess what? Now we have a beautiful new faucet that looks great and actually gives the whole bathroom a really nice “remodeled” sort of look!

So, this week, Grace asks you to laugh with her. When something goes awry or annoys you this week just take a step back. Ask yourself, “Is this something that will profoundly affect my life in the long run?” If your answer is no, then have a good laugh about it, maybe share the experience with a friend, thank your lucky stars for what is great and constant in your life…. then move on. We may never get a chance to hear Grace laugh, but she can hear you laughing every day. She looks forward to hearing about your life’s little annoyances.

Touched by an Angel

Today I’m taking a respite from writing about Grace’s condition. Instead I wanted to write about all those who have been touched by Gracie and the overwhelming support we have received. Not only has she had a profound effect on our life, it’s heartwarming to hear how Gracie has impacted the lives of so many others. For many, Gracie has been a daily reminder to cherish the ones you love and to keep the trials of life in perspective.  

For Holly and I, it’s the comfort of knowing we have so much support that helps us cope with the daily challenges. It has been very moving for us to have so many people offer their assistance during this trying time. Even though we may not always reach out seeking help, knowing it’s only a phone call away is reassuring.

If you haven’t already done so, we invite you to come over and meet Gracie. You’re bound to fall in love with her the moment you run your fingers through her soft silky hair and look into those deep blue eyes. Her innocence will remind you of all the beautiful things in life.

We thank you again for all your love and support. I hope you will share in the love that Gracie has brought to so many.

Our first week home

Home is where the heart is. I’m not sure who coined that phrase, but it couldn’t be more true. This week was all about being home with Grace. With all the bad news and challenges we’ve had since her diagnosis, being at home with her has been the lone joy. Holly and I have been very happy to be home with her and seeing her in a more comfortable environment.

Our first week home has been challenging on many fronts. Holly and I have been resuming business operations and our respective responsibilities. We’ve been adjusting to the Hospice services and learning how to navigate through that process. And we’re also seeing Gracie’s seizures manifest physically.

A day after we came home we finally saw our first seizure. It was very disturbing to us to see her this way. But it also helped us recognize what they look like. Even though she was diagnosed with EMEE (Early Myoclonic Epileptic Encephalopathy) nearly two weeks ago, we’re just now starting to see the physical effects of the seizures. I believe her diagnosis was identified even before it manifested to where it is now. Although I doubt the early detection has served any useful purpose, it has given us more of an insight to what’s going on with her.

During the first seizure on Tuesday, her face became flush and her head was tilted back while her eyes were wide-open. Her right arm was raised and her left leg was straightened out as both jerked in a slight rhythmic pattern. This rhythmic pattern was what really keyed us into the fact she was having a seizure. She made very little noise during the brief (10-15 seconds) seizure. Afterwards, her body relaxed and her normal coloring returned. Although it was alarming to us, she seems to be OK afterwards.

The following day she had another one and by Thursday we saw four. What’s concerning to us is she’s generally quiet during the seizures so we’re not sure if we’re missing some too. Even with a video baby monitor and close proximity we could be missing some of them. The one correlation we have made is they appear to only be happening while she’s awake. When she’s asleep she’s in a very deep state with very little movement or activity.

Obviously we contacted the neurologist who doubled her seizure medication (Keppra). Unfortunately, as previously discussed, seizure meds are fairly ineffective against this type of seizure disorder. So we haven’t seen it get any better. Since Thursday we’re seeing about 2-3 a day. As much as it pains us to see her having one, it’s comforting to see her come out of it and not appear to be in any pain or discomfort. We don’t know if she’s more out of it then normal during these times. She just looks at peace.

I think it probably affects Holly and I more then anything. It’s just so unnatural to see such a beautiful young baby having a seizure. It’s like seeing nature going awry.  She’s so innocent and pure it pains us to see her going through this. Not to mention the realization that this is probably just the beginning. I wish there was more we could do, but sadly there isn’t. All we can do is continue to be there for her, take care of her and more importantly shower her with love, kisses and hugs. We love our little baby so much.

Gracie’s Walk

I sit here trying to get reports done for work and can’t stop thinking about what I should post to start with on Gracie’s blog. My husband did such a wonderful job with the introduction to Gracie’s page yesterday, and he is truly very talented.

Since we were discharged from the hospital on Monday, the past few days have been just a whirlwind of activity and it’s hard to even remember what day it is today. Between trying to adhere to a new feeding schedule, watching for seizures, a plethora of medications, learning how to operate new medical equipment, consulting with hospice visitors and doctors on a daily basis, as well as reconfiguring the nursery and bathrooms to accommodate her needs, I have also tried to slowly get back into the office and focus more on the work that I truly love. That got me thinking about other things I truly love and what things I think that Gracie will truly begin to love as she grows and develops.

What do you love to do? For us, as a family, one thing that we are so happy to have back is our evening walk together. Each night, either before or after dinner, my husband, Gracie, and Bodie the beagle set out to walk around our neighborhood. We never truly realized how much we treasured this time together until it was gone. In the hospital we truly missed this time dearly. My husband would come home in late evenings and try and walk the dog by himself while Gracie and I stayed at the hospital and this was a very sad time for him since we couldn’t join him.

Last evening, we took our first walk together since being home from the hospital. Brien kept saying how happy and overjoyed he was to be walking again together. He must have repeated himself five or six times over the course of the walk! We walked by one yard where the yard was being mowed and suddenly, the smell of the fresh cut grass was just very evident to me. I never realized how much I loved this smell, it was heavenly, and I wondered why I never noticed before. Each day, I am slowing realizing that little things mean a lot, and although I don’t notice a lot of little things, I try and now make it a point to notice at least one every day.

I think Gracie is also good at noticing the little things that give us pleasure in life. Yesterday, for the first time, she stayed awake through the entire walk. Usually, the lull of the stroller puts her right to sleep, but yesterday she remained wide-eyed and alert. She even made a few cute baby noises that brought smiles to our faces. Perhaps she too, enjoyed the smell of fresh cut grass or just being out in the fresh air. Or, perhaps she also missed these walks as much as we did.

So, through this blog, each week, Gracie will ask you to do something for her. It may be something that you already do each day, something you have never done, or maybe something you’ve done in the past but haven’t done it lately. Little suggestions on small things that you may enjoy and may also help you love your life just a little bit more. This week, Gracie asks you to take a walk with her on some evening, look around for something new and different that you maybe never noticed before. She looks forward to hearing your comments on the wonderful things you encounter on your journey with her.

Grace's morning ritual

In addition to her 3 hour feedings, Grace also gets quite a fill of meds. This is her morning medications (it looks worse then it really is.)

She slept well last night and has been more alert during the day. Last night Holly and I took her for a long walk. It was our first time out since being home from the hospital.

Unlike previous walks where she would sleep most of the time, last night she was alert and looking around during the entire time. It made Holly and I really happy to see this. We're really enjoying the increase of her overall alertness during the day.