Thursday, March 22, 2012

Spring

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!
Amanda

4 comments:

  1. It was great to see you, your mom and your sweet little babies. Sorry I wasn't able to stay the weekend. I would have loved to go to the beach together. Next time maybe!

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  2. Looks like a fun spring break!
    I have to point out how adorable it is that Bella has her head cocked the same way, in the same pose as you in her picture with Max as you are a couple pictures up with Sammy and Max. Too cute!
    And I thought she was a mini Jason all this time...... (;

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  3. I love reading these updates on you and the babies. I miss them and you so much and we pray for you everyday. I hope to get to see you not too far in the future. Love you sis!

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  4. Thinking about you guys everyday. I love reading all your updates! Love you!

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