8 Years ago....

I don't know if this date will ever lose the significance it has in my heart.  It is a day I still remember vividly...actually with a bizarre level of detail.  It was the day I saw my child dying. It was a day I saw the faces of my other children in more pain than I could imagine as fear of losing some one so dear to them hit them truly for the first time  It was also the day my baby boy and I started our journey into this thing called Epilepsy and seizures and crazy diets and refusing toxic treatments.  It was a day that planted a fear so deeply inside me that I knew only God understood. I didn't know that my youngest son and I would, more or less, walk this journey alone but we haven't done so bad.

8 years ago, everything was unknown...would he be alive the next day or the next?  Would he be permanently changed?  How could I help?  There were no answers.

But, 8 years later, most of it spent as a single parent...I have gotten to witness first hand, and continue to see, the amazing young man he is becoming.  Just a few weeks ago I got to watch as he signed his commitment to his first choice college - after also being accepted into his #2 and #3 choices!  Honestly, 8 years ago I didn't know if that would ever happen.  He has worked hard and I am proud of him for not letting anything hold him back.

I know many of you have prayed over this young man and thank you is not near enough.
 I know God heard our cries. 

Thank you, God, for this child.

Blessed,

Update on the Little Man

Some of you have sent me messages asking about how my DS2 is doing.  He is doing really great!  Today we spent the afternoon at MUSC to get the results of his recent sleep study and extended EEG montage.  This comes after a visit and EEG in April that didn’t bring the news we had hoped for.   Unfortunately, his April EEG still showed abnormal activity and the risk of seizures has kept us on the diet.  After his initial disappointment he has managed to have a pretty good attitude about the limitations it continues to place on his life.  He does so much better than I would.  He has will power of steel!  

Fortunately, today the results did not show any abnormal sleep patterns and NO sign of seizure activity during sleep.  WhooHOOO!  It was such huge relief to find out there are no additional issues; and at this point we don’t have to add medications on top of the diet. 

DS2 just finished 5^th grade with wonderful grades and a Presidential fitness award. He also recently played the part of Sebastian in a local Children’s Theatre Production of A Little Mermaid. He is busy this week at a musical theatre day camp and will be spending his summer learning to sail once we get moved.  We are blessed and I am so proud of this little man and how hard he works to not allow his medical issues to hold him back. 

Behold, children are a heritage from the LORD, the fruit of the womb a reward. 
Like arrows in the hand of a warrior are the children of one’s youth. 
Blessed is the man who fills his quiver with them! 
He shall not be put to shame when he speaks with his enemies in the gate. 
~Psalm 127:3-5

Over the Moon...47 weeks Seizure Free

I don't write about DS2's seizure disorder very often but it is time for an update!  Yesterday we went for his check up with his Neurologist at MUSC and he had a great visit. I have to say that I love our Neurologist and the staff at MUSC.  I know it is a God thing that we ended up with Dr. Turner.  His level of care, concern and understanding is beyond anything I could have hoped for.  He deals with DS2 so wonderfully and doesn't forget that this Epilepsy Journey is one the whole family takes.  I am grateful that he proposed and has directed us in using the Modified Atkins Diet as a treatment for DS2's seizures.  He and the entire staff at MUSC seem to understand how scary this journey is daily and are extremely patient with me and my Mama Drama (which is more valuable than you can imagine!) 

As far as DS2, he is 47 weeks seizure free (yep....I count each and every week!) and growing like a weed.  He has been on the Modified Atkins Diet (a less restrictive version of the Ketogenic Diet) since February and so far we have seizure control!!!  His blood work has been fantastic and shows no ill effects of the diet on his other systems.  He does amazingly well on the diet, much better than I think most adults would do!  Of course, the holidays are presenting some challenges as all the traditional sweets are more available and tempting but so far, so good.  I am proud of my little guy and his ability to cope with the changes in his life.

It has been almost a year since our world changed and we began this journey, but I know God has blessed us beyond measure with each moment!

30 Days of Thanksgiving: Day 16-29

30 Days of Thanksgiving

Day 16-29, 2012:  Oh my, I haven't done very well with my daily posting!  (But rest assured I have focused on what I am thankful for and spent more time IRL on that than in the virtual world sharing about it!)  It has been a crazy, busy month and I think this morning is the 1st time I have felt I had time to sit down and share. 

This year, I am acutely aware of how much I am thankful for my youngest DS.  We started this year not knowing what the future held for him (not that we know that now...but you know what I mean!)  If you don't know the back story you may want to start reading HERE  In the last 12 months I have witnessed his very close brush with death and more seizures.  Then walked with him down the path through some scary months of doctor's visits, tests and a major lifestyle change.  It hasn't been easy, but honestly, it hasn't been hard.  When faced with a very somber reality and what possibilities it brings into your life, it is amazing what strength God gives you to change.  I don't know that I have slept through the night in over 10 months but I don't resent that...I am so thankful to have the opportunity to check up on an alive, sleeping child. 

There have been some very poignant moments of thanks where he is concerned this past year, some of them big and some of them small, but none insignificant.  When he walked on stage to perform at his piano recital, I sent up prayers of thanksgiving that he was fully functioning.  When baseball season rolled around, I was astounded that we found ourselves sitting on the bleachers...there were many months that we didn't think that would ever happen again and I was in tears of thanksgiving.  When Mother's Day rolled around and he was there.... I felt thankfulness beyond compare. During the summer days spent swimming in the pool...I was thankful for each and every moment. When flag football season started and I got to see him take up his spot at quarterback I felt thankfulness that was overwhelming. 

The last few months have clarified so much in my heart and mind and put life in a perspective that I "knew" but had never had to live with each of my children.  Considering how much I know now about what we are dealing with ...seizure disorders...Epilepsy....I am so very aware of how blessed we are.  I have met so many families that are carrying a much heavier burden and that gives me pause for gratitude daily.  So, I thank God every single day for my children and husband because I know, without a shadow of a doubt, HE is the reason I am blessed to share life with them.

I am also immensely thankful for my handsome husband.  He is a great husband and a wonderful father.  I and so grateful for his patience, love and how he takes care of our family. I know that I have a lot to be thankful for in the marriage department and I count those blessings every day!

I know that even though my 30 Days of Thanksgiving posting was not as consistent as I had planned, I am still very filled with gratitude for all the blessings in my life each day....and for a Savior who made it so.

Praise God, from whom all blessings flow;

Praise him, all creatures here below;

Praise him above, ye heavenly host;

Praise Father, Son, and Holy Ghost. Amen

`~Thomas Ken, The Common Doxology

Seizures, We Now Know Why...

The other day I was feeling quite chipper and had the music on in the kitchen and was doing a little dance when in walked my youngest DS.  He stood there observing my wondrous dance moves and then announced, "That is why I have seizures...your dancing," and turned around and walked out.  Yep... he tells me it is my dancing that causes his seizures. 

Well, at least we now know why.... :-/

Luscious Low Carb Creamy Lemon Jello Jigglers!

My youngest son is on a strict low carb/high fat diet treatment for his Seizure Disorder, so lately my time in the kitchen is focused on making sure he has plenty to eat without becoming discouraged.  This can be particularly hard when it comes to snacks (you can only be excited about so many cheese sticks!)  Today I found a recipe just too good not to share.  Even if you are not on a low carb diet this snack will melt in your mouth and make you feel wonderfully indulgent!  It tastes just like my Grandmother's Lemon Meringue Pie (minus the meringue and flaky crust, of course)! I just can't wait to try out other Jello flavors in this recipe. I bet the lime will taste a lot like a yummy summer lime pie! 

My little man was so happy to have something sweet that works perfectly in his diet and who doesn't love jigglers, especially when they are in fun Easter shapes?

Luscious Low Carb Creamy Lemon Jello Jigglers

2- 3 ounce packs of sugar free lemon Jello

1 cup boiling water

5 ounces heaving whipping cream

Spray a pan* or Jiggler mold with non stick baking spray. Dissolve Jello in boiling water and then add heavy whipping cream and mix well.  Pour into prepared mold/pan and place in refrigerate for approximately 3 hours until set.  Pop out on a plate and enjoy!

Store in fridge.

*If you don't have a mold pour into a small baking or cake pan and when set cut into squares for Jello bites!  These are good in a zippy bag for snacks.

This is not a Jello ad (although, I wouldn't feel bad at all if Jello decided to pay me....uhm...) but I just happen to use Jello and my new Spring Jello Mold Kit to make this.  I am sure any brand of sugar free would work just as well.  

A Diagnosis...

My boys, planning, creating and always doing something!

I have been pretty quiet the last few days and that is due in part to having overnight guests from last Wednesday through Sunday and also from the fact that I have spent what little free time I have had trying to understand and wrap my head around the diagnosis that we finally received last week concerning my sweet, youngest son. 

After his adventure in testing, a 72 hour EEG, abnormal brain wave spikes were found.  This, in conjunction with previous seizures, brings the conclusion that my sweet boy has a seizure disorder.  So...there is an answer, but it is an answer that brings more questions. 

The Neurologist gave me lots of information to digest and told me to talk it over with DH and then we can all decide how to proceed.  The Dr. was very sweet in that he understood that the information he was giving me was going to raise more questions and he assured me he would patiently answer each one.  What a relief because as the week has gone on my list of questions has grown substantially. 

As far as my sweet boy goes, he is feeling good.  He still has some headaches but we are wondering if they are allergy related and not related to the seizures (see...we still have lots and lots of questions.)  His primary Dr. put him on a 24 hour allergy medicine after our visit last week and it does seem to be making DS2 feel better. 

It has been 5 weeks since the last seizure...and we are still wading through this new stream of life.  There are so many questions about the present and future for my little boy.  As a Mom, it scares me a lot. I am concerned for the changes this may bring for DS2.   I am not sure what we are going to do as far as treatment as there are many options; some include medication, others revolve around diet and vitamins but all include a large dose of prayer.  I am praying continually to keep reminding my heart (and head) that God is in control.