Tuesday, September 28, 2010
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.
Saturday, September 25, 2010
Friday, September 24, 2010
Thursday, September 23, 2010
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!
Wednesday, September 22, 2010
Saturday, September 18, 2010
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.
Friday, September 17, 2010
|Audrey and Russ Jones visiting Grace|
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!
Thursday, September 9, 2010
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.
Tuesday, September 7, 2010
Sunday, September 5, 2010
Thursday, September 2, 2010
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.
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.
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.