Friday, December 31, 2010

What a Year!

Pajama Jam '09
I remember New Year's Eve 2009 like it was yesterday. I remember thinking what a great year it was going to be. I had such high expectations for 2010. I remember telling Holly it was going to be the best year of our lives. With a baby due in the summer and the prospects of financial gain from my lawsuit, our future looked bright.

I guess as every year comes to an end you're compelled to reflect on the noteworthy events of the past year. There were certainly no shortage of events this year. When I think about this past year it starts in January. It was at that time I had my surgery and was bed-ridden for three weeks while recovering from one of the most horrific procedures one can imagine. It took two months to completely heal and now it’s just a fading memory.

During that time I was also in the middle of my lawsuit against The ICEE Company for trademark infringement. Which led to probably one of the few highlights of the year, a nice settlement check from them.

Of course during all of this Holly was pregnant with Grace. We were enjoying the pregnancy process and all the things that come along with it. We had such high expectations for our new baby and the way it was going to change our lives forever.

In February the water main to the house broke. This is what our front yard looked like for a couple of weeks while it was being repaired. 

In the spring, Holly and I were debating on what to do with our office when the lease expired in September. We had been at our current office for three years and simply outgrew it. There were some days I couldn’t go in because there was nowhere for me to sit and work. Plus we wanted to be closer to home and our new baby due in July.

So we called up our broker and started looking at new offices. He took us out and showed us some offices close to our house. Places we couldn’t have afforded 3 years ago were now in our budget. So after careful consideration we decided to purchase an office instead of leasing one. Something we would have never done if we had known about Grace’s condition beforehand.

July 13 was such a joyous day for us. We were so excited Grace came into this world and joined our family. For months Holly carried Grace and felt her every movement. On this day we got to meet our little bundle of joy for the first time.

About a month before Grace was born we started the loan process through the SBA for the office. We knew doing so during Holly’s last month of pregnancy could be challenging, but we figured everything would go smoothly and we could handle both. However, something that should have only taken two months to complete took over five months due to the incompetency of the bank and the SBA being paralyzed by bureaucracy. During those five months we gave birth to Grace, spent two weeks in the hospital with her, discovered her rare seizure disorder, were placed on Hospice care and her untimely death. It was a very trying time to say the least.

Then a day after we closed escrow we were notified one of our biggest contracts was being terminated. This was by far the biggest setback of our professional lives. I likened it to a swift punch in the gut that sucked the air right out of us. This significant loss in revenue was going to greatly affect our ability to operate and yes pay for our new dream office.

After escrow closed we still had to wait another month for the tenant improvements to get done. This just continued the ongoing saga of this purchase and all the stress associated with it. I had to put on my project management hat now and make sure everything was getting done to our specifications. I felt this just compounded the stress of losing Grace and took away from my time to mourn in peace.

Construction ended on my birthday and we were able to move in. It was one of the best feelings I’ve had all year. As soon as the last contractor walked out our door Holly and I embraced and cried in relief it was all over. The sleepless nights have ended and I have a certain sense of peace about me now. Perhaps it’s a fitting end to a trying year.

Earlier this week Holly had her Thyroid removed. She’s had a nodule on it for years and we’ve taken the wait and see approach to it. At every doctor’s appointment her doctor gets more and more adamant about removing it. This time he finally persuaded us. We met with a surgeon a week later and he said he would schedule it for the Spring. But then a couple days later he called back and said he had a cancellation and wanted to get her in on 12/29. Being a slow time of year for us we jumped at the opportunity to do it now. Fortunately everything went as planned and she's home resting now.

So we ended the year back in the hospital. I can’t believe how much time we’ve spent in the hospital this year. We should get a Thank You card or punch-card for a free burrito or something.

We'll spend New Year's Eve at home tonight. What a welcome relief I might add. I can't remember the last time I stayed home on a New Year's Eve, but I've never wanted to stay home as much as I do this year. I don't know what 2011 has in hold for us. All I do know is we'll continue to embrace life and make the best out of any situation fate throws our way.

Tuesday, December 28, 2010

Our last hope

I haven't spoken much about all the tests that were done prior to Grace's discharge from the hospital in August. If you remember, they drew a lot of blood that was then sent off for DNA testing at four different labs across the country. Many of these tests took months to complete.

A few weeks ago we got the final results, everything was normal. So why didn't I say anything you may be asking yourself. Because in this case, no news is not necessarily good news. Meaning her doctors still don't know what caused the Early Myoclonic Epileptic Encephalopathy. And without knowing we're left in the dark.

We've spoken many times over the last few weeks with her Geneticist, our last hope to answers. He's so kind and understanding it makes dealing with this easier. The last time we spoke he said he wanted to confer with some of his colleagues to review her case and see if there were any other tests we could do. After doing so he said there was one last test we could do for something called Ceroid Lipofuscinosis. Unfortunately, they have no more blood for the test. So we're left with the remaining blood from a heal prick they do on newborns that's then sent to the CA Dept. of Public Health's Genetics Screening Program. So today Holly and I submitted a Notarized request to have the remaining sample sent to another lab for testing. It's very disheartening to know there will be no other tests available to us after this. There's still a chance there might be some blood left over at one of the previous DNA labs, but for now this is it.

Of course I Googled Ceroid Lipofuscinosis and from what I could understand saw very few similarities to Grace's onset and condition. So I called the Geneticist back to talk about the differences from what I read to Grace's symptoms. Although he disputed some of the claims about the age of onset, he agreed there were still differences from this condition and what we saw in Grace. But we're grasping at straws here and this is our last hope at finding the root of the EMEE.

So where does this leave us? It leaves us with little hope to knowing what brought on the EMEE. In medical lingo they call that idiopathic. That one word is what makes this so hard to understand and cope with. Not only for our own piece of mind, but also our future. If Grace's condition was brought on by a recessive gene the likelihood of having another child with EMEE is a staggering 1:4. Now those odds can change, but right now that's where we're at. I guess ultimately that's why I haven't written about this, still too much uncertainty. I don't like leaving things vague and without closure.

If the lab can run the test on the heal stick we should get an answer in about a month. But the odds of her having Ceroid Lipofuscinosis are slim. After which time we'll meet with the Geneticist and see where we're at.

Friday, December 24, 2010

My Christmas Story

It’s quiet in the house right now. Not a creature is stirring, not even a mouse. Santa is presumably circling the globe delivering presents and joy. Holly’s in bed sleeping soundly and I’m sitting in Grace’s dimly lit room writing. I find such solace being in here. It’s a special place to go and reflect.

This will probably be the first Christmas Eve where I don’t go to bed with a sense of excitement and anticipation for the morning. No, this year it’s about heartache and reflection. They say the holidays are especially hard for families who have endured the loss of a loved one. Personally, I don’t think the holidays have anything to do with it, we’d still be feeling the same way. Oh how I miss her so much. No words can express how I feel. My heart continues to ache with no end in sight. I have never cried so much in my entire life then I have over these last few months.

Even though Grace isn’t with us this Christmas we have tried to surround ourselves with her memory. We’ve printed up lots of pictures of her for around the house. We’ve adorned our Christmas tree with special ornaments in memory of her. And of course Holly and I share stories about her and the special times we shared together. Then tonight another special sign she’s still with us in spirit.

Holly and I went to a nice restaurant for dinner and on the way home we decided to go to old Sac for a horse and carriage ride. It just seemed like the perfect ending to a lovely Christmas Eve. When we arrived there was a small line of families seeking a ride as well. Holly and I stood there quietly looking off into the distance while hearing the faint rhythmic sound of horseshoes hitting the asphalt. We then heard a little boy go up to a girl sitting on a bench behind us and say “Can I sit with you Gracie?” Holly and I immediately turned to each other thinking the same thing. I could see tears well up in Holly's eyes as I strived to hold mine back. We looked behind us and saw this cute little blond girl quietly sitting there. It was like an angel telling us she's still with us. I am so grateful for these reminders. Perhaps these signs is what will bring me peace one day.

We visited Grace today and brought her a little Christmas tree. We told her how much we miss her. How much she would have loved experiencing her first Christmas with us. We will continue to celebrate Christmas with our little angel by our side. Thank you for the signs and reminding us you’re never far away. We love you Gracie.

Thursday, December 23, 2010

Have Courage


I took a break from the blog after my last post. I'm still tired but have been able to get out of bed a little easier each morning and back into some old routines. A couple weeks ago, I was cleaning my cell phone and when I reached to put it back in the case, I noticed a message was inscribed on the inside of the case. It said "have courage." I never realized the message was there despite taking it off usually on a weekly basis. It made me wonder about the many times in which I was not courageous and why this was so. What makes us lack courage? What are we frightened about? For me, often times it is the mere possibility of conflict that usually gets in the way.

Grace lived every day with every ounce of courage she had. Despite the constant seizures, insufficient breathing, oral challenges, and her overall severe developmental delays, she thrived during those short three months because she was not scared. Children are so courageous as they are not yet tainted by the toils and trauma that life brings to all of us. Despite being an innocent victim, Grace exhibited more courage than I ever have seen, just her will to live.

Because of her, we have been so fortunate to witness many acts of courage over these past weeks. Someone had the courage to leave us an anonymous gift of a Christmas Jar, which truly embodied the spirit of the season. Another person had the courage to email us supportive words as someone who had also lost a daughter to Grace's same rare condition. Her daughter passed away a few years ago so I can only imagine what types of emotions must have come flooding back to her when reading about Grace. Small acts of courage which made a such a huge impact on both Brien and myself.

So, for Grace, I am now going to start working on being more courageous in whatever small ways that I can handle. Being blessed with a career that I love and the wonderful interactions we have with so many families on a daily basis make each day worthwhile. Not to mention our wonderful, flexible, and supportive employees. I have to be more courageous in going the extra mile for all of our families and employees. I have to be more courageous in going the extra mile for myself and for my wonderful husband.

I'm starting by focusing on my health during this last month of the year. After many years of putting off some minor surgery, I am finally going to take care of the problem once and for all. The chapter needs to be closed and I need to have courage to close it. I am hopeful that having this courage will be the first step to a much better new year. Grace would have wanted it that way. She would have wanted you to have courage too for whatever life's challenges are brought to your new year. Please share with us and Grace your stories of courage.

Wednesday, December 8, 2010

Tired


Tired. There’s no other word to better describe the feelings of this past week. I’m tired of feeling blue. I’m tired of the rain. I’m tired of living in the fog. I’m tired of not being able to sleep. I’m tired of struggling to get up in the morning. I’m tired of asking why. There are no answers so we must choose. Either continue to be tired or rest and realize that tomorrow is a new day. I know that one day I will wake up and not be so tired.

Thus, I choose to realize those things I am not tired of and hope they will out number the things that I am. I never tire of looking at Grace’s pictures or videos. I never tire of sitting in her room and remembering many precious moments that were spent there. I never tire of remembering how much I loved changing her diaper or dressing her in a precious outfit for a new day. I never tire of seeing how, in her pictures, she was a perfect extension of us. I never tire of seeing her big blue eyes every time I look into my husband’s eyes. I never tire of hearing so many stories about how she has touched people in seemingly random ways.

So tonight I will go to sleep tired, hoping that tomorrow I will wake up just a little less tired than the day before. I know that I must continue through this process, finding a new me, and hopefully discovering some new gifts a long the way.

Thursday, November 25, 2010

Thankful this Thanksgiving

Holly and I would have loved to dress
her up on this special holiday
I know the notion of me being Thankful this Thanksgiving might seem odd considering the recent loss of Grace. But on this Thanksgiving morning, I sit in Gracie's room reflecting on everything that has transpired over these last few months. About our heartache and yes, about the things I'm thankful for. As much as I still hurt and miss her, I'm still thankful for so much.

I'm thankful I have such a wonderful wife I love so much. She was such an incredible mother to Grace and for that I'm eternally grateful. Her connections with Grace through song were truly amazing and exemplify some of the best memories I have of her. I'm thankful for the way she would play with Grace and work on communicating with her. I'm thankful for all the early mornings she got up to take care of her. And I'm thankful we can share in our memories of Gracie and how much she meant to us.

I'm thankful to all her doctors, nurses and therapist who did the best they could to care for Gracie. Many went above and beyond what you would normally expect to attend to Grace. Their care and compassion for Grace made her life better and for that I'm grateful.

I'm thankful to all our friends and family who have supported us during this time. Your generosity and love is beyond anything I can expound here. Just know it touched us greatly and will never be forgotten.

I'm thankful for my health and having a roof over my head. I'm thankful I have such a wonderful son who is growing into a remarkable young man. I'm thankful for our beagle Bodie, who brings us companionship and laughter.

But most of all I'm thankful we had Gracie and could share our lives together for the short time we had her. I'm thankful that I got to be her daddy and love her everyday of her life. I am so grateful we could take care of her and make her life as comfortable and happy as possible. I'm thankful I got to hold her, bath her, play with her, feed her, change her, and love her. We gave Grace every ounce of our love and I know she felt it in her heart.

I love you Gracie and I will never stop being thankful you "Graced" my life.

Saturday, November 20, 2010

The Power of Patience


Yesterday, Brien visited Grace and spent a couple hours gardening around her site. He cleared out dead grass and weeds, planted new grass seed, and was even able to aerate the grass with a special little tool that he made. He did all of this just in time before the rain started yesterday. Rain is forecasted here for the next several days. We know that with care, time, and much patience, new grass will grow again and replace those spots that have perished. I have been thinking a lot this week about lessons Grace has taught us about the power of patience.

Back in June, before she was even born, Brien and I made a huge decision that would greatly affect our personal and business lives. We decided to move our office location in order to expand, be able to offer more services, and be closer to home. Being entrenched in our local community was a very important factor in this decision as well. After a short time spent looking at few different places, we found the one that fit us the best almost immediately. Then, we researched whether buying or leasing the office space would make the most sense for us. Again, our decision was largely based on wanting to be closely involved in the community and also the fact that the office was near our home. We decided that the office would definitely work for our business for the long term and went forward with the process of purchasing the space.

In the meantime, Grace was born and as you know, several weeks later we received the devastating diagnosis. Brien immediately had to assume the roll of her full time caregiver and try and work from home. Our office purchase was set to close at the end of September and then during October we had set for construction to start at the office to build out some rooms. We had no idea how we were going to care for Grace during this time as Brien was going to have to visit the office frequently to supervise the construction project, making sure things were on track, on time, and generally going smoothly. We were thankful to have the support of many friends and family offering to help in her care, however given the complexities of her medical fragility, this would have been a more difficult thing to accomplish now.

Well, we ended up not having to worry about Grace's care because we didn't end up closing the deal in September....or October....during this time, many red-tape issues came up with the purchase, too many boring things to describe here having to do with legislation, small business loans, and many boring blah blah government agencies. During these past couple of weeks, Brien and I had grown very frustrated over the whole thing and were starting to think maybe it just wasn't meant to work out at all. Then, last week, when we had just about reached our frustration limits, we ended up finally closing the deal.

Today, here I sit in her room, reflecting over all of the past month's activities. I realize that patience truly is virtuous. Because the whole deal took so much longer than expected, I believe it was much easier for us to truly focus on Grace, not only on taking the best care of her, but also being able to treasure every moment we had with her and making each day special. We even had plans to set her up in a playpen at the new office so that we wouldn't have to be away from her for a second. Although we are very saddened that the playpen plan never happened, we do take great comfort in knowing that Grace knew best, she had a plan for us that we may not have necessarily saw then, but now we can see it just a little more clear. This week, Grace asks you to remember the power of patience. She knows that good things come to those who wait.

Saturday, November 13, 2010

Gracie's shoes


Okay, once I tried to put shoes on Grace. They lasted about thirty seconds before she abruptly kicked them off. Lesson learned, newborns don't care for shoes, I guess they prefer to be footloose and fancy free! A couple of our friends gave us some ballet slippers for Grace at her memorial services and we put them at her grave site. I think she is wearing them and definitely dancing with angels. We visited her yesterday and noticed that someone else had been there this past week, we don't know who, but they left a very sweet angel ornament and a couple of roses. If that person is following this blog, we thank you for your random act of kindness. This week, I do believe our angel worked her magic once again. Let me tell you what a lesson Grace has taught us.

These past few weeks Brien has been working very diligently at planning a perfect memorial marker for Grace. I am very thankful that he has taken the lead on designing such a wonderful tribute for our baby girl. The first thing he did was to measure the other markers in the garden of angels to figure out what size we needed for hers. We noticed that there were a few markers there that were bigger than the others and, of course, we wanted Grace's to be as big as possible so we compared these to the cemetery's guidelines for size. They were slightly larger than what the guidelines stated so Brien called the cemetery director to confirm that the size we wanted was going to be alright. The director stated that the families who had the bigger markers unfortunately had not been given the size guidelines ahead of time, and we absolutely had to adhere to the guidelines given. This was very upsetting to us, we thought, why can't Grace's memorial be just as big and special as some of the others? Brien was fired up and his passion for this got me fired up as well. Our next step was to attend the board meeting for the cemetery and plead our case.

Well, we never got that far. Brien came to me that evening and said he had a change of heart. He thought of how the other children's families might feel coming to the site and seeing that her marker was bigger than most of the others. Right now, there are no other children that are right next to her site, however, in the future, the grim reality is that there will be others. Imagine a child who was laid to rest next to her and their family seeing that they didn't have as much space as Grace. How would we feel if we were that child's parents? We immediately decided that we could make her marker just as special and as beautiful as we wanted it to be and still adhere to the cemetery's guidelines. I have been thinking about this all week and about how amazed I am at my husband's realization that we need to be gracious about this matter. He is truly the most unselfish person that I know and he is teaching me to be a better person. That's just one of an endless number of reasons why I love him so very much.

So, this week, for Grace, take a walk in someone else's shoes. Before you react to some situation that seems to outrage you, take a moment and put on the shoes of another. You may just see things in a different light and decide that the new shoes fit just fine.

Monday, November 8, 2010

The Lost Highway

It's been just over two weeks since Grace passed away. And it's just as painful now as it was then. We continue to struggle with the loss of our precious baby. There isn't an hour that goes by we don't think about her. There are so many emotions associated with the loss of Grace, but none more fitting then the word Sad. I just feel so sad. The pain tears at my heart. We struggle to find solace, but none is to be found.

The first week was definitely the hardest. Holly and I were faced with making the necessary burial arrangements while our wounds were still open. We had family and friends in town to attend to. And we were dealing with business matters that couldn't be ignored. So I think we both felt like we were just hanging on by a thread. I don't think it was until after the memorial service and everyone had gone home that I felt like I could really start the mourning process.

Holly and I both like spending time in her room. It's the one place we feel the closest to her. We can sit in there peacefully and talk to her or reflect on our loss. There are a couple of blankets we haven't washed so we can still smell her and feel her close to us. We keep the onsie she was wearing when she passed away in her crib. And of course all the pictures and videos. We're so grateful we took so many pictures and videos. But I still wish I had more.

Here's a video I shot on September 22. I was working in the office and she was lying on the bed behind me. I remember hearing cute sounds from her. I turned around and saw her smiling. I grabbed my phone and took this video.



I know Holly and I remember the good times much more then the bad. The way the seizures progressed and ravished her poor little body. We were talking the other night about how quickly her condition deteriorated. She passed away exactly two months after being diagnosed with EMEE. What started out as 1-2 seizures a day had progressed to 40-50 a day. Even though at the time she died we started to see an improvement, it was clearly too late. We really felt we would have much more time with Grace then we did. We never expected her life to be cut so short.

I'm so grateful we had the good times though. Of course we had bath time, and going for walks but perhaps the one thing I miss the most was our late nights together. I would stay up to 1-2:00 am to do her late night feeding. Many times I'd hear her getting restless so I'd grab her and bring her out into the living room with me. We'd lie down on the couch next to each other and snuggle under a blanket. She would often fall asleep right away but I would continue to relish in the euphoria of having her next to me. It brought me so much joy and happiness. And I know Holly had the same special time with Grace early in the mornings. I think it means a lot to both of us that we each had our own special time alone with Grace.

Today the house is quiet and to a certain extent empty. Our lives used to be busy attending to Grace. She was always in the forefront. Now there is no one to attend to other then the dog. What was once the beginnings of our family, is now back to a couple and a dog. I know this hurts Holly so much. She so wanted to have a baby and be a mother. As much as I'm hurting I know it's much more painful for Holly. There is no comparison to the bond of a mother and child. Holly so loved being pregnant and establishing that bond with Grace. It was so evident when you look at the first few pictures of Holly holding Grace. I wish there was something I could say or do to help her, but there isn't. We talk a lot. We try and put things in perspective and apply some sort of reasoning and understanding to our loss. But they're only temporary rationalizations. There is no comfort to be found.

So we go about our daily lives trying to cope with our loss the best we can. I know it will take time, and lots of it for the pain to go away. But the memory of Grace will live on in our hearts forever.

Sunday, November 7, 2010

Gracie Month by Month.....by Jamie Heller

Rainy days are the worst. Grace passed away on a gloomy, rainy day. Thus, for the rest of our lives the rain will be a reminder of the worst day of our lives. Trying to look for some brightness in today, I decided to read again something that our dear friend, Jamie wrote about how Grace touched her life in many ways. She even had the courage to stand up at Grace's services and read this. It was, without a doubt, one of the most touching moments of the service. Reading these touching words again has helped put a bit of sunshine into my otherwise dreary day today. For those of you who didn't have the opportunity to attend her services, or for anyone who needs a bit of sun in their day, I encourage you to read Jamie's heartfelt words. We love you Jamie Heller.

In July Gracie came into this world and taught us the joy of life and the comfort of those we love. In August she taught us about challenges, perseverance and strength. September was the prime of young Gracie’s life and she gave us so much. In just 3 months, Gracie and her parents helped us all to cherish some of the very fundamental life experiences that make us human including the gifts of hope and love.

Gracie reminded us to go out take a walk, enjoy the beauty of life and to reconnect with the one we love. Gracie reminded many of us to keep the grand scheme of life in perspective and not sweat the small stuff. She taught us to be open to and tolerant of people and maybe make a new friend or two along the way. Above all Gracie reminded us to find the good in every day.

Here it is October and Gracie has taught us to not put things off because you may never know if or when you’ll have the chance to do it. Gracie’s final lesson in life came to us this month, the lesson of selflessness of her parents who always did only what was best for Gracie.

Brien and Holly’s selflessness is apparent to all who know them. They continued their blog, Gracie’s Journey to teach us valuable life lessons as they learned them. They never complained and they never gave up.

So thank you young Gracie for the lessons you taught in July, August, September and October as we will carry them through all the months of the year. We will honor you by loving and cherishing those around us, finding the good in every day, persevering when times are tough and being selfless in the face of hardship. So rest peacefully young Grace we were all honored to have known you.


Jamie Heller

Monday, November 1, 2010

Just The Way You Are

I wanted to share this video tribute to our beautiful baby Grace. It includes the song "Just The Way You Are" by Bruno Mars. The first time I heard this song I knew it would be ours forever.

Signs


I sit here in Grace’s room at 8:48 on Monday morning. Brien and I have been in and out of her room numerous times over the past week. Her room is filled with flowers and smells just heavenly. Brien just commented that it smells sweeter and sweeter in her room every day. As I sit here today, my thoughts turn to all of the signs we have noticed over the past week that indicated she is still with us in many small ways.

As Brien has so eloquently explained, the greatest gift Grace gave us was the way she passed on, smiling peacefully and squeezing Brien’s finger were the most powerful signs that brought great comfort to us. Several other things happened that day as well, and at the time we didn’t notice all of them, but some of our observant friends did notice. That day was gloomy and rainy, and we had four of our close friends at the house that had stayed the night previously. Our friends Renee and Carl left early that morning to take care of a few things at home and then planned to come back over later in the day. Shortly after they left that morning was when Grace passed away. Our friend Audrey immediately called them to tell them the news since they had just left. Both of them proceeded to immediately turn their cars around and race back to our house. At that moment, they both noticed that the rain stopped. There was a break in the rain from that point on until Grace was taken away in the hearse. Once she was taken away, the rain poured and the wind blew fiercely for the next two days.

When Brien informed our friend, Audrey, that Grace had passed, Audrey stepped outside of our house. She noticed a single black crow flying overhead and thought that was odd since crows usually travel in groups. After doing a little research, Audrey shared with me that she found that in mythology and folklore as a whole, crows tend to be symbolic more of the spiritual aspect of death, or the transition of the spirit into the afterlife. It’s amazing to me that she witnessed this just minutes after Grace had passed.

Fast forward a few days to October 27th, 2010. Grace’s obituary was due to show up in the newspaper that morning. I woke early around 6:30am to bring in the paper so it would be ready for Brien to read when he awoke. He spent hours laboring over the right words to use for the newspaper and I knew he would want to read it as soon as he got up. But, to my dismay, no paper had arrived. No big deal, I thought, our paper usually arrives between 6:30-7:00am so I guess we just needed to wait a little while. Brien awoke around 7:30am and the paper still had not arrived which we were starting to think was a little odd. Brien called the newspaper office to make sure we were going to receive a paper. I went and sat in Grace’s room around 8:30am as I had done many mornings since she passed. As I sat there staring out the window, I saw a man walking to our front door to deliver the newspaper. I looked at the digital clock in the room, it was 8:44 am, the exact hour that Grace had passed away. Maybe just a weird coincidence….but maybe not. Perhaps she thought it fitting for her obituary to arrive at this exact time.

Brien mentioned in the previous post that we witnessed one of the butterflies from her service appear out of one of the flower arrangements that afternoon after we buried Grace. That is a sign we won’t soon forget. Let me explain why. Yesterday (Sunday) we went out to the cemetery to visit Grace. Her grave site was just as beautiful as we had left it, all of the flowers were still perfectly placed, looked wonderful, and smelled just as sweet as they had on Friday. Brien and I talked with her and then just sat for a long time with her. We then decided to walk around the cemetery, it’s such a beautiful place and so serene. After walking around, we returned to Grace’s site to visit once more and say goodbye. We sat again for several minutes and then a butterfly gently fluttered by us and landed on one of Grace’s pink flowers. Brien and I were completely amazed and in awe, once again. We truly believe she is still with us, and the signs are all around us indicating so.

Both Brien and I want to continue Grace’s blog. It may change and evolve over time, as does life. But for now, I’d like you to continue to do something each week for Gracie. It’s a small way to indicate we will not forget the lessons she has taught, and will continue to teach us. Are you open to receiving signs? Grace asks this week that you look for a sign in something simple or just acknowledge some simple gift in your life. She thanks you for doing this for her.

Sunday, October 31, 2010

Rest in Peace Sweetheart

On Friday we did the hardest thing any parent could do, we buried our baby. It was a heart wrenching experience and one I hope no parent has to face. We took great solace in knowing so many people were touched by Grace and offered their support to us.

After the service we requested all the guest leave the cemetery so Holly and I could bury Grace in private. We brought her into this world together and we were going to see it through to the end together. The burial was conducted in a very respectful manner with great consideration to our feelings.

After everything was done and we were left alone we knelt down in front of her grave and prayed for our baby girl. I asked all the other children in the Garden of Angels to welcome Grace into their arms and to look after her. We hope she will become part of their family and their spirits can play together.

As Holly and I knelt there looking at all the flowers around her grave we couldn't help but a notice a single butterfly make his way out of a bouquet of flowers. He sat on top of a rose for a moment and then gently floated-off circling around the flowers upon us. It was a fitting end to a beautiful service.

We're very grateful so many friends and family attended the service and offered their support. It meant so much to Holly and I. Thank you from the bottom of our hearts.

Wednesday, October 27, 2010

Monday, October 25, 2010

Funeral Arrangements

Today was a tough day. Holly and I started the morning off by sitting in Gracie's room talking. It was nice to be able to reflect about Gracie before heading out to make the necessary arrangements.

We had narrowed down the list of cemeteries to two and wanted to visit them before going to the funeral home. The first one is very well known in the area. It's off a busy street and always looked nice driving by. But after going to the area where children are buried we were immediately turned-off. First off, it wasn't serene whatsoever and secondly you could hear the loud traffic going by. Honestly, we felt it was just horrible.

The second cemetery we visited was the Sylvan Cemetery in Citrus Heights. Almost immediately we felt comfortable there. It was established in 1862 and has a very traditional feel to it. Some of those buried there date back to the Spanish American War. We met two caretakers who were very kind and took us to the Garden of Angles. This is a special area for babies that is set upon a ridge overlooking the cemetery. Nearby is a gazebo for services and visiting loved ones. We knew this was the place. After meeting with one of their consultants we went out to the area to choose her plot. At first we were discouraged at our options. But after 10 or so minutes we found a perfect spot for her at the corner of the garden. 

After making our arrangements there, all we had to do was drive across the street to the funeral home. We spent time with the funeral home director going over details. He was very helpful and made the process as easy as possible. Our hardest part was selecting a casket to our liking that met the requirements of the cemetery. We hope to have that finalized tomorrow. In the meantime, we do have the funeral arrangements established and would like to share them here. We would like to invite all those who have followed Gracie's Journey and wish to help celebrate her life. 

Remembrance Service
2:00 p.m. on Friday October 29, 2010
in the Garden of Angles Gazebo
Sylvan Cemetery District
7401 Auburn Boulevard
Citrus Heights, CA 95610

Arrangements Provided By
Reichert's Funeral Service
7320 Auburn Boulevard
Citrus Heights, CA 95610
(916) 729-2229




Sunday, October 24, 2010

Detour to Heaven

It is with great pain and sorrow that I inform you of Grace's passing on Saturday morning. I know for many this will come as a surprise. Unfortunately for us, she started to decline on Thursday.

As shared before, Grace has had many struggles with breathing. On Thursday morning I was awoken by Holly saying that Gracie wasn't breathing. I jumped out of bed, went into her room, laid her down on the changing table and proceeded to give her mouth-to-mouth resuscitation. After a few breaths she started breathing on her own. We called the Hospice nurse who came out and saw her. She checked her lungs which were clear and her overall status seemed ok. The rest of the day was good with no further problem.

On Thursday evening, Gracie and I got in the tub for bath time. As I held her Holly helped wash her. She loves bath time and was enjoying it very much. Afterwards we dressed her and prepared for an out-of-town friend coming to visit. During the visit Gracie was very engaging and enjoying being held by a new friend. After about 30 minutes we laid her down on her play mat and we sat down for dinner. A few minutes later Holly wanted to get a little wedge to put under her so she would be more upright. When she lifted her up she started to choke and spit-up. Almost immediately her color started getting pale and blue. I rushed her into the nursery and put her down on the changing table to start mouth-to-mouth. She was not responding as well as she did earlier in the day.  I had Holly call 911 while I continued to work on her. I'd get a little breath every 5 or so seconds, but not much more. By the time the paramedics arrived, a few minutes later, I got her breathing, albeit faintly. They started hooking her up to monitors and checking her. We informed them of her code status and they called the hospital for further advice. We were told they don't normally transport hospice patients to the ER, but would if we wanted. Since the ER visit last week offered little help we didn't think it would be any different this time. And by now she was breathing well enough to let them go and care for her ourselves.

Holly and I changed her and put her on oxygen in her crib. She seemed to be breathing ok for a little while. After a few hours we could hear some moisture obstructing her airway. We suctioned her out but it still continued. It was at this time we decided to put her on her side. Almost immediately her breathing was clear and unobstructed. It was around this time she fell asleep and never really woke-up again.

Holly and I slept on the floor in her room that night. She slept all night with no incidents. We continued to feed her but cut the volume back considerably. We also only gave the essential medications. On Friday morning we called and requested a Chaplin to visit us and say a prayer for Grace. Later that day the Hospice nurse came back out to see her. She felt Grace's condition had deteriorated and prepared us for her end of life. As you can image this was very hard to hear. She stayed a couple of hours and helped us with some other things including doing a memory mold of her hand and foot. Our dear friend Jamie had given us the memory mold kit when Grace was first hospitalized. We never got around to completing the project. We thought we had time.

That evening Holly and I called our friends Russ and Audrey and asked them to help us. We also asked if they would like to come over and see Grace. Without hesitation they said yes and were on their way. Grace was not doing well. Even though she was breathing ok on her side and tolerating her feedings and meds, whenever we rolled her over for a couple minutes to change her diaper her breathing became obstructed. I think it was at this time it really began to set in with Holly and I her time was coming to an end. Even though we had each other, we were scared to be alone. So we asked them to stay over that night. We also called some other close friends to come over and be with us. They were all great. They did everything for us allowing Holly and I to stay with Grace.

On Friday night Holly and I slept in Grace's room. She did pretty good over night with only a little fussiness early in the morning. Holly fed her and stayed up with her. I got up shortly thereafter and we talked about her current condition. Holly noticed her breathing was more shallow and infrequent. Around 8:30 am Holly and I were trying to decide if we should feed her at 9 and if so how much. We were both sitting in chairs next to her crib so we could caress her and talk to her. I wrapped her right hand around my index finger and we were both looking at her. At 8:44 she squeezed my finger and the most beautiful smile we had ever seen came across her face. Her grip lightened and within seconds the color in her face began to fade. Holly and I looked at each other as if to say, did you just see that. It was the most beautiful thing I have ever seen in my life. We believe that Grace saw something so beautiful and peaceful enough to let her know it was okay to let go.  What that was, we will never know. What we do know is that she did this for us and it was the greatest gift. We were so grateful she went peacefully without any discomfort.

Because of her fragile state for the last 36 hours we didn't dare move or hold her. So after she passed I picked her up and placed her into Holly's arms so she could sit and hold her. We called our friends into her room and we all knelt in front of Holly with Grace and cried. It was such an emotional time for all of us. We were so grateful to have our close friends nearby and able to share this precious time with us.

Emotions ran high for several hours afterwards. The culmination was when I wrapped Gracie up in her blanket and we all walked outside to the funeral home's hearse. I gently laid her down on the gurney and held Holly tightly in my arms. As they slowly drove away our friends embraced us as we all cried helplessly. We felt so empty and sad at our loss. We lost our precious baby who was so innocent and pure and who brought so much love to others.

I know our loss pains us greatly. But we also have great solace in knowing we gave Gracie every ounce of our love. We took the best care of her we could. I know she felt our love as we felt hers. It will take us a long time to get over the pain of our loss. But we will never forget Gracie and all she has brought us.  Our Grace was truly amazing and we are going to do everything in our power to make sure the wonderful memories of Grace live on forever.

Monday, October 18, 2010

The fork in the road

It seems like as time goes by things get harder as opposed to easier. Not so much in caring for Grace, but more so in the decisions we're having to make.

After Grace's choking episode last week Holly and I have talked a lot about it. We've been put in the position of having to decide when to prolong life and when to let nature take it's course. This is a very difficult thing for a parent to face. We love Gracie so much it pains us to even think about having to make such decisions. Yet these are the issues we're facing on a daily basis.

Today we had an appointment with her neurologist, Dr. Friederich. As usual we went in with a list of questions and he took his time in answering all of them. However, one question seemed to be more difficult for him to answer then the others. We asked him to write an order for an Apnea monitor so we could be alerted to any changes to her breathing. Surprisingly he was very reluctant to do so. Not because of the cost or any adverse effects to Grace, but more so for us.

He told us a story about another family he knew in which the wife had a seizure disorder. One night she died of SUDEP (Sudden Unexplained Death in Epilepsy) while her husband was asleep next to her. When he later learned of SUDEP he was understandably angry no one ever told him about it. He felt if he would of known he could of kept a better eye on her. It wasn't until later he told Dr. Friederich that in hindsight it was better he didn't know because he would have been constantly worried about her. I think for this reason he was reluctant to order a monitor for us. But after seeing how persistent Holly was he eventually relented and wrote an order for one.

We also talked about starting the ketogenic diet now even though she's still too young for it. We feel it might not be the opportune time to start it, but drastic times call for drastic measures. So if that means starting it a couple months earlier then it's been tested so be it. He was going to have the Kaiser group in Hayward that specializes in that diet get in touch with us to see if it would be appropriate.

Towards the end of our appointment he thought of something else and said he'd be right back. He came back a few minutes later with a handout about another rare seizure disorder called Migrating Partial Epilepsy in Infancy. It's very similar to EMEE and something we might look into further. He knows of a patient who has it in the bay area and will pass along our information to his mother. He said she's done a lot of research on it and she could be a good resource for us.

Shortly after getting home from the doctors appointment the UC Davis Hospice nurse was here. She usually comes on Mondays to check in on Grace and order any medications or supplies we need. On today's agenda was the replacement of her NG tube. We have to do it once a month and last time it took a few tries. She also had with her a medical student and the Social Worker.

Everyone was in Grace's room while we did the procedure. The nurse and I were the ones primarily working on Grace while putting it in. About halfway through the procedure Grace started to choke and stopped breathing. We pulled the tube out and I lifted her head with my hand. Immediately her color started to go pale and I could see blue showing through. I then proceeded to give her a breath of air and a few chest compressions. After a few seconds of no response I gave her another breath and could hear Holly getting upset. I then turned to the RN and said do you want to step in. She moved in picked Grace up and put her over her shoulder and slapped her back a few times. Slowly she started to breath again. We laid her back down, put her oxygen on and monitored her breathing.

After a little while we tried to put the NG tube back in and encountered no further problems. Once we checked the placement we put her back in her crib to rest. Afterwards we all migrated out to the living room to talk. It was at this time that the nurse said she was hesitate at doing the CPR since that's not her role with Hospice. This was rather alarming to us. We assumed being a nurse you're always going to be in life-saving mode, but that wasn't the case. She was very diplomatic in how she explained it, but life-saving is not hospices' role. Even though she knew Grace was choking due to the NG tube she couldn't try to revive her. But at the same time she said she would support us and assist us at reviving Grace but wouldn't be actively involved.

So as you can image this was disturbing to us. We assumed having medical professionals coming into our home to attend to Grace would be doing everything they could to keep her alive. But that doesn't appear to be the case. In a lot of ways choosing to bring Grace home under Hospice care was a death sentence. It appears we have higher expectations for Gracie than her doctors and hospice.

Clearly it's going to be up to Holly and I to decide what's best for Grace in a critical situation. Unless her brain shuts down or she stops breathing due to natural causes we're going to continue to take whatever measures are necessary to revive her. We hope we're not being selfish taking this approach, but we just can't let her die if we don't feel it's her time. It's such a tough time for us. No parent should have to live day-by-day wondering if their child is going to die and what they should do to prevent it. We just love her so much and don't want to lose her. But eventually we're going to have to make the most heart wrenching decision of our lives. I only hope we can have the strength to do what's best for Gracie.

Wednesday, October 13, 2010

Our first call to 911

Today was supposed to be a good day. Grace turned 3-months old and we were looking forward to taking some pictures this evening. The day started out fairly uneventful. Holly was at the office and I was working from home and taking care of Grace.

About an hour after Grace's 1:00 p.m. feeding I brought her into our office/guest room and put her on the bed. I like to do this so I can keep a closer eye on her and she can hear me. About half an hour later I went out to the garage to put laundry in the dryer and start a new load. After a few minutes I returned to our office. The first thing I looked at was Grace. Immediately I could see her coloring wasn't normal. As I approached I could see her face was bluish and there was spit-up on her outfit. You can only imagine the adrenalin that went racing through my veins. I immediately scooped her up and was horrified at how limp her body was. She was blue, not breathing and as limp as a rag doll. I was so fucking scared you can't even imagine.

I brought her up to my shoulder and started slapping her back to get her to start breathing. It didn't work. At this point I was beginning to think she was dead or about to die. I brought her down to my waist and cradled her in my left arm as I began mouth-to-mouth resuscitation. It wasn't working. After several seconds of this I started doing some chest compressions. In the mean time I'm calling 911. I put them on speakerphone so I could continue to work on Grace and talk (yell) to the 911 operator. In between answering her questions I continued to give Gracie mouth-to-mouth and chest compressions. After about 20 seconds she took a slight breath. You have no idea how good that felt to hear. I continued to work on her and 10 or so seconds later she took another breath. It wasn't until about 90-seconds after I started giving her CPR she started coughing, gasping for air and crying. I never heard such a beautiful sound in all my life.

Within minutes the Fire Department arrived and the paramedics were attending to Grace. By that time she was breathing on her own and didn't appear to be in any distress. They checked her out and confirmed her lungs were clear and she was breathing ok. I began to explain to them her condition and her Code status. They were very grateful for that information and said they would be sharing that information with their Captain so he can inform the other shifts. Since that engine would most likely be the one responding again it was good for them to get familiar with Grace. Around this time Holly arrived and was clearly upset. I felt so bad for her and could only image what horrible thoughts she was thinking as she raced across town to get home.

After the Fire Department left we called Kaiser and UCD Hospice. We were advised to take her to the ER so they could do an X-Ray of her lungs and check for any fluid. Sometimes fluid can get into the lungs and not be picked up by just listening.

Our time at the ER was pretty efficient and uneventful. They knew we were coming so they had a chance to review her medical records in advance. The X-Ray showed her lungs to be clear and after the examination we were cleared to go home.

We don't know what caused her to aspirate. We have a foam wedge in her crib to keep her elevated during feedings. It had been about an hour in a half after her last feeding before this happened. We will hold the Clonazepam tonight until we can talk to her neurologist in the morning. There's a chance that med could have effected her respirations. We are also discontinuing the fortifier we were adding to her breast-milk. There might be a correlation to when we started using this new one to her episodes of spitting up.

As for me, I'm taking it really hard. I can't help but think about the what-ifs. What if I took longer doing the laundry, or went to the kitchen afterwards, or any of a dozen other things I could have done before returning to the office. She could of very well died and I would of never known until finding her. Even though we have a video baby monitor and keep her close by we can't watch her every minute. And that's what makes this all so hard. We just never know what's going to happen next. All we can do is continue to love her and take the best care of her we can.

Tuesday, October 12, 2010

The Power of Words

A couple of weeks ago, we received a poem in the mail from Gracie’s Great Aunt Vickie.  She lives in Michigan, thus we haven’t seen her for a long time, but we are so thankful for her kind words and support. She has sent Gracie many gifts, but this poem was really the greatest gift of all.  Aunt Vickie said that when she wakes up in the middle of the night, and things weigh heavily on her mind, it helps her to write about them. Thus, she composed this poem for Grace at 1:45am on 9/29/10.  So, this week, Gracie asks you to write something from you heart and then give it to someone that you love.  It will make you feel all that much better.  

 

“Gracie”  
By:  Vickie Gunaca 
 
I see a beautiful baby in a picture on her site
I wish I was there to hold her, 
Even just for one night.
She’s so precious with her head full of hair
And eyes of deep blue.
All the beautiful outfits
I know that some may be from you.
 
It seems that one of her favorite times 
Is walking with mom and dad
And, of course, Bodie the doggy too. 
This is when she is never sad. 
 
You see, Gracie has so much love around her,
Holly and Brien and all the other people too 
And you can see why god has left her here,
To show her all that’s new. 
 
We love you Grace Elizabeth! 

Thursday, October 7, 2010

A prayer for Grace

Grace's grandma has requested everyone to say a prayer for Grace on Sunday 10/10/10 at 10:10 a.m. We hope you will join her in praying for Grace and sending those healing wishes.

Wednesday, October 6, 2010

Live action

I shot this video today so Grace's neurologist could take a look at her twitchiness. I figured I'd post it on here as well. I haven't tried uploading video to her Blog before so this is a good test. The convenience of being able to instantaneously capture activity on video and share it with her doctors and researchers has been a godsend. I primarily use YouTube and send them links to particular videos. So far the videos have been very helpful at following her seizures and diagnosing what type of seizure she is having. If this works well I'll post more in the future.

Otherwise, Grace is doing good. We had Physical Therapy at Kaiser on Monday which went well. The Physical Therapist went over some different range of motion exercises and body positioning. But most importantly we worked on Gracie's oral motor skills, which is a priority for us. Because of the NG tube there's a likelihood Grace will lose the instinct to eat. So we're working with her daily on putting her hands in her mouth as well as her bottle and pacifier.

The lack of her oral drive has become an increasing concern for us. When she was born we were instructed not to use a pacifier with her and to only give her the nipple. In hindsight, we feel we were given some bad information by some of the professionals at Kaiser. And now Gracie is suffering the consequences. So we're now trying to reinitiate the whole suck/swallowing instinct and so far it's been challenging. But we'll continue with it and hopefully over time see some improvement.

Sunday, October 3, 2010

Spa Day and a Scare


Yesterday, our friends Sarah and Audrey came over to treat Gracie to a spa day. They brought yummy spa snacks, soothing music, and showered Gracie with much love and pampering. Sarah, a devoted Catholic, prayed the Rosary for Gracie and Audrey used some energy healing practices with her. Audrey worked on opening her Chakras. These are centers of energy, located on the midline of the body. There are seven of them, and they govern our psychological properties. The chakras located on the lower part of our body are our instinctual side, the highest ones our mental side. As you can see, by the look on Gracie’s face in this picture, she very much enjoyed herself!

After her spa treatments, we gave Gracie a bath and then dressed her up for a photo shoot. She opened all of her wonderful gifts from the Children’s Wish Foundation and she was very interested in a few of the toys that played some catchy music. The one that made car noises also intrigued her! It was great to see her awake and alert during all of the days events and we got some great photos.

Later that evening I was thinking what a great day this was with so many blessings to be thankful for, mostly for her loving friends who want do to whatever they can to try help take care of her. I fed Gracie through her NG tube at nine, as usual, and she was peacefully sleeping, wiped out from the day’s events. A few minutes later I went in to check on her and noticed her stomach convulsing so I grabbed the suction expecting she was going to have a little spit up and I would just clear it out with suction. She then spit up but the secretions just kept on flowing this time, I couldn’t keep up with the suction. I yelled to Brien who came running to help lift her up so she could breathe. Her lips turned purple and then she quickly became very floppy, as she couldn’t breathe due to all the secretions that were coming so fast and even out of her nose at this point. Luckily, Brien picked her up and gave her some vigorous pats on the back, her lips returned to pink color, and she started making noises. I don’t know what I would have done if Brien hadn’t been there, I feel like I truly panicked while he stayed amazingly calm.

It’s been a rough evening. She went back to sleep for a while but then was fussy and awake again several times last night. Both Brien and I got up numerous times during the night to try and calm her down with various methods. She is finally resting peacefully now as I type and I am on my third cup of coffee for the morning! After last night’s scare, Brien and I talked about how this was really a test for us as far as figuring out what we are to do in that situation should it happen again. We decided that we both need a refresher course in infant CPR so we are going to put that on the priority list for sure. I pray every day that we won’t need to use those skills but I also know it’s better to be prepared.

So, this week Gracie asks you to do something that you have been putting off doing for a while. For us, it’s the CPR class. For you, it may be just mowing the lawn or returning a friend’s email. Whatever it is, don’t put off today what you can do tomorrow. Gracie wants you to avoid procrastination this week.

Tuesday, September 28, 2010

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.

Saturday, September 25, 2010

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.


Friday, September 24, 2010

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.

Thursday, September 23, 2010

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!