Thursday, March 22, 2012


As we pass the halfway mark for Spring Break 2012, I thought I should share some pics of the kids enjoying some fun under the sun! Who needs to leave for the week when you live in such a beautiful place like the Emerald Coast? Here are highlights of time spent with friends by the pool and the Gulf of Mexico.

Overall, the week has been great. I am not getting anything productive done around our house, but I know one day I will not remember how quickly the laundry was cleaned and put away, but I will recall how big the smiles were on these kids faces as they sank their feet in the snow white sand? It's a no- brainer. Quality time with them is just more important.. pristine home or not.

The sad thing is we live here every day of the year and hardly ever make the ten minute drive to the beach. I hope this summer will be different, but I know Sammy will most likely dictate that for us. If time in the outdoor heat is going to set him back, I guess we will try to find ways to take the kids seperately. This week, Sam was able to hit the beach for an hour or so and then hung by the pool for about two hours the next day. He was tanked after each excursion, but seemed to really love getting out and seeing other kids.

Sam had a sleep study and 12 hour EEG at the end of the past week and right before his birthday, but even though it was not the best experience for him or his dad, he did not let it put a damper on his mood. To sum up the negative of that experience I need only a few words.. more wires.. a gazillion electrodes.. and no crib! It sure did enlighten us on how dramatically different our son is from when he was 9 months old for his last one and could not even lift his neck and did not put up any kind of fight during the placement of all those electrodes. Things sure have changed! The funniest aspect of the test was when he said they were done hooking Sam to everything and Jason had 5 seconds to try to eat his sub for dinner only to have Sam crawling all over the bed in a tizzy. Then over the intercom he hears the tech say, "Ahem, Excuse me sir.. but he is about to fall over the side rails." I can just see it and imagine myself trying to hold him down all night... hate to say I am glad Jason went this time! In the end, Jason strapped him into a carseat so he could get some rest.. hardly conditions for an accurate study of a typical night's sleep. Now we just need to await the results in 2 weeks at our followup neuro appt. Of course he did not "perform" any of his heart rate, seizure or hypoxic tricks for the study so who knows if we will learn anything at all.

Next week we have immunizations for Sam and Maddox, which has me a bit on edge. Sam had issues after each round since birth and as it has been a year since the last set, I am less than excited about trying to see what his delicate system can handle. His Mito Dr says the immunizations are still very important, even though we have had setbacks with each round. He says that the progressions of disease studied surrounding mito kids and vaccinations have shown it is not really the vaccine that is troublesome, but that it is the fever and stress that accompany them. They still feel he needs them though as he would be in serious trouble if he came into contact with one of those illnesses that we are hoping to avoid by vaccinating. I just pray he goes in Monday in his best state of health and that no issues arise in the hours and days that follow. I couldn't handle another hospitalization or regression right now. On another note, I am trying to get a plan together about getting Sam to his specialty follow up appts in Atlanta, for which he is long overdue. Doing this with a newborn is not very easy.. so I hope it all can come together smoothly.

I continue to pray this week for my friend and her family as her husband undergoes radiation treatment for cancer in his throat. Meanwhile her son is sick and running fever. Her husband is experiencing the swelling and discomfort in his mouth and throat that makes it impossible to eat. I know all too well how horrible it is to watch someone you love go through all this after my mom's battle with Lymphoma. I hope God guides them in ways to get through the remaining weeks ahead. I know they have amazingly strong faith and will cling to that when it just seems too hard.

I have a praise for another family in my heart. My music pastor is a new grandfather this month and all I can think of is how amidst so much pain and hardship of life, God sure brings beautiful blessings too. After losing his wife to cancer, I have been reminded of when our family lost my Dad and how hard it was to imagine there was anything ahead for us or my mom to look forward to.. and then it seemed even harder when her cancer hit, but God had a plan and brought her grandbabies. This changed her life and continues to be something that offsets all the challenges she faces. I know his wife is also celebrating this joyous news from Heaven. Thank you, God for grandbabies! They are yet another way like Easter and all the signs of the Spring season, that life will go on and we can all experience rebirth and life anew with much to praise ahead.

Happy Spring!

Sunday, March 18, 2012

Ugly Bug Ball

With Isabella turning seven today and Samuel's second birthday just around the corner for tomorrow, we decided they should share a family celebration. We chose an "Ugly Bug Ball" theme as the kids had these fun bumble bee spring outfits and since we were doing this as a spring picnic.. it just worked! Plus who doesn't love the classic Ugly Bug Ball music from Disney's Summer Magic.

We cooked burgers on the grill and enjoyed watching all the cousins play outdoors and perform Wii Karaoke for us. It was a great day. I was especially happy since Samuel's first birthday was not during a very strong period of wellness last year and I am so thankful he was able to dance and sing this time while surrounded by all the people who love him.

Bella really enjoyed belting out some tunes and showing us her best dance moves. I can't believe how grown up she has become in the last year! It really became obvious as I listened to her reading her birthday cards with ease and thanking everyone without the reminders. WOW.. they grow so fast!

Sammy also decided to use the party as an opportunity to flex some fine motor skills as I watched him all of a sudden pick up his fork and start feeding his own cake to himself. I guess I was not shoveling it in at his desired pace! Such a funny little man! He is learning new things every day but it is I who has learned the most from him. He was so sweet all day.. full of hugs. I just wish I could keep him this way for the rest of his years. I sure love all these cute bugs!

Saturday, March 10, 2012

Hills and Valleys

Today I read about the loss of a sweet boy who I have followed online. He showed more courage on any one day than most adults do in a lifetime. I can only imagine the pain this family is feeling to say goodbye. His pain is over and I hope the family can find peace in that he touched so many lives with his warm smile. This family is in my prayers.

I began this post earlier today, amidst chaos of meeting the needs of my 4 kiddos on a busy saturday morning. I was feeling the weight of my worries today for Sammy which often comes and goes on a daily basis. I was originally writing about the hills and valleys of our life lately and how I wish I could stop focusing on the potential threats ahead. I then came back to my post after absorbing the news of this mother's loss. How can I live in fear of future hills ahead for Sam to climb when I see that so many other children's life journeys are cut short so early? God has given us a finite time on this earth but an eternity in Heaven. I really have no business worrying over the hills and valleys ahead for this earthly life. It is more important that we focus on the life thereafter and the steps we are taking now that will lead us all to that happy journey. Every day is precious with the ones we love and it is best to focus on what is in our current path.

This week we began the 30 day halter monitering with hopes of recording Sammy's symptomatic events again for the cardiologist so maybe we can further confirm his understanding of the dysautonomic crash of sorts that leads to his bradycardic and, in turn, hypoxic events. His Dr is concerned less about slowing heart rates but about his heart stopping for these periods, as he has had in the past. At the same time, we have increased his dose of the medicine he takes to counteract this problem and we hope it is the best solution. If not, we need to consider the pacemaker again. I just don't know if he could make it through the open chest surgery with his prior track record and I fear the regressions that always come with procedures.

Sam has been playful and happy this week, although more floppy in his walking. He has been moving much faster in exploring his world. He has taken more advances with his sipping of fluids as well. He still sounds somewhat wet with it, but far less choking behavior and less aversion. I am trying to weigh out more outside exposure to public settings as we did take him with us to the final cheerleading functions for the girls last month and he did well. Our worries primarily surround that bad combination of the risk of illness and the taxing of his system with exhaustion and stress.

In therapy, my main current focus is on his speech development. I have asked his therapist if we should try to increase speech sessions from once a week to at least twice as he is not moving far forward in this area. I fear the prospect of him remaining largely nonverbal if there is something we can do to push it forward. He is so quiet much of the time and then has days where he seems to be really trying to find his voice with the sweet sounds of babbling. The other day, I responded to his call for "mommy, mommy" which is a quite rare use of this word and I was ready to hear what else he had to ask of me..holding him and trying to understand.. he was unable to tell me and began a tantrum, banging his head against the crib in frustration. He signs for many things and we are working on expanding this but it is just not enough right now. He loves the ipad tools but our therapist does not want to try too many different communication avenues away from verbalization as he clearly knows what he wants to say.. just not how to do it. I am sure it will come in time. Meanwhile, he only gets OT on consult and greatly needs more as he still can't stack blocks or color or feed himself with a spoon. His PT has been wonderful for movement but recently has had personal issues and keeps canceling his weekly sessions. So I have to get involved now with that on a more aggressive, advocating level.

In 6 months, Sam will start the IEP process, preparing to exit the early intervention program and enter the school system with VPK-D (developmental PreK). This is something I know little about and need some help navigating.. so that will be my next hill to educating myself about how to best advocate for his needs.

Sam will be 2 years old in one week and I can hardly believe it.. this is such a joyful milestone for us all! Bella will be 7 the day before and I want to celebrate both of these special events but right now a big party does not seem possible. I want Sam to know how loved he is and how proud we are of all he has done this year. I think it is almost too emotional for me to even share how special this 2nd year was as we watched him make such strides in so many areas.

We also have the sleep study/ continuous EEG this next week so, it should be a pretty busy week for us. At least cheerleading has wrapped up for the girls so our schedule will be calmer than it was over the last few months. Spring Break is right around the corner and I look forward to some fun outings as a family.

Probably my greatest prayer for this coming week surrounds the approval of the nursing to continue. That would be the best birthday gift God could give to Sammy. The approval required renewal review is this week and
I can't think of a single more important thing that contributed to Sam's health and wellbeing this year. I just don't know what it would mean for him or frankly, our family, if he loses this coverage. I don't know where I could even begin to fight for this again.. where I would draw the strength. It feels like when that happened last year it was God reaching down and holding Sam in his hands. He knew we were at a breaking point and Sammy was fading fast. And then our prayers were answered.

I am also praying about a special project for Sammy and I that has been on my heart for some time. I am wanting to start up a music therapy foundation, bringing the joy and love of music to touch and help local children with challenges. I think it would be something I could do to give back what has been given to me. I am just working out a plan on how I want to develop it. I pray for guidance on how to begin bringing this dream to reality.

My final prayers are surrounding a friend of mine's family during a difficult time. My friend's husband is undergoing radiation this month and it will be a difficult time as they all go to be with him through this trial. He seems to be doing well after a surgery to remove cancerous tissue in his throat. They have so much faith and I am sure he will persevere through this time swiftly. I hope God helps them to cope and brings to close this scare with a disease that is hitting far too many families. I wish I could understand why cancer and other deadly diseases touch so many people nowadays.. indiscriminate threats that you can't see coming. Thankfully, this family is well supported by our church and community, with an army of prayer-warriers pulling for them.