Happy New Year!

Update

We made it through the night with out further seizures. She slept most of the day yesterday, which is typical. Of course, she played all night last night.

This marks the third time ever that Ivey seized and did not take a trip to the ER. Thanks for the prayers.

You never get 'used' to it...

So we wait, which has become part of this crazy new normal that we have been living for the past few years. Honestly, I am tired of the waiting game, but we can we do? Now it is 11:30 pm and I am trying to decide if I should try to nap or stay awake. Meanwhile Matt is busting it to get work done because he suspects what the night is most likely to be like too. Just another part of our normal.

Ivey had two seizures tonight within about fifteen minutes of one another. Her Diastat has been administered. So now we wait. Normally three to four hours pass and then the next bought of seizures begin. They last until we get her to the ER and begin an IV regimen of anti-seizure medications. That on average takes right at an hour - seizure included. Imagine a seizure lasting an hour.

Just days before Christmas Ivey had a round of seizures. That night we made two trips to the ER, the second being transported via ambulance.

So now we are waiting. Thank goodness Camille is here, Ivey's nurse. Awesome nurse. She arrived at 10pm and will stay until 8am, which is our normal night nurse hours. I can't imagine not having the nurses here and trying to play the stay awake game every night, each week, month in and month out - for years. We are tired now, so thank God for our night nurses. They are our watchful eyes who love Ivey too.

Ivey's seizures do scare me, but for the most part they are not life threatening. However, in pure Ivey fashion, an hour long seizure is abnormal and comes with precautions. Also having seizures on the daily dose of medication accompanied by the high dosage of Diastat that is administered is not typical, but name one typical thing about sweet pea that is 'typical'. God broke the mold when he made Ivey.

As atypical as the length of Ivey's seizures are, they are still just seizures. And dare I say that we are 'used' to them, it is more like we have learned how to prepare and brace for them. Instead of running around like chickens with our heads chopped off, we run around gathering and organizing. Right now there is a bag extra clothes packed, Ivey's pink bag is packed, oxygen tank is ready, suction machine is out, and we are waiting for the cue from Camille that she is seizing. We will call our neighbors to come over to sit with the boys. We will put Ivey in the car and go.

We have a set plan of action. Included in that plan are some amazing neighbors who take the 2am phone calls and come over to sit here with the boys while we go. Like we have said a thousand time before, we are blessed.

It's like a well oiled machine around here. Us, Ivey, nurses and neighbors. The docs and nurses in the ER have come to know Ivey and set up shop in preparation for her. Ivey's what we call a "frequent flier" in the ER. So get ready ER, we may be dropping in sometime tonight for a short visit.

So whenever some one says "God won't give you more than you can handle", they are wrong. Alone we could never 'handle' this. So he gave us great nurses, doctors, and neighbors. Together we 'handle' Ivey.

Say a prayer for Ivey and watch her video with Elmo and jingle bells. They remind us how awesome this journey is+

Elmo says 'Up'. Ivey signs 'Up'.

We waited a long time for these jingle bells +

Ivey is sitting in the middle with Ms. Ashley (in the green sweater). Walker is over in the left hand corner. Thank you FBCPS.

this is just too much fun...

Send your own ElfYourself eCards

elfed

Send your own ElfYourself eCards

Santa with a Twist..

Christmas with our friends at BEGIN .... Center for the Visually Impaired in Atlanta

Last week I was plowing through the mall with Walker and Knox. While rummaging we ran into someone I have not seen in years - who I guess you would say "watched me grow up". It's always funny to see those people who remember the golden days and then watch their face when they see me in tow with three children. I get the same eery feeling every time I see one of my former students getting married - or for Heaven's sake having a baby themselves. It only means that I am aging too. Ugg.

Anyway, she asked the boys what they wanted from Santa - Knox is tried and true, wants the exact same three things every time; Walker, on-the-other-hand, just can't seem to want the same things, there's something new every time. Let's hope Santa is a mind reader come Christmas morning....

Well, Ivey was not with us. So she looks at me with this perplexed look, lowers her voice and asks, "How's the baby?" Remember she has not seen us in years, so she really only knows the "harder days". Do you know what a blessing it is to look some one in the eye and say with a smile and sheer excitement that Ivey is great....and then go on to tell how she is signing, babbling, standing with assistance and "Oh my" how SMART she is? And then to see the reciprocal- my friend's face light up and her voice change to a little higher pitch. Seems the miracle of Christmas is coming a little early around here.

Two weekends ago we took the boys and Ivey to see Santa...more miracles. Literally, we were surrounded by children and their families who have their own story to tell, their own 'new normal' and success in nontraditional ways. This year time with Santa came with a twist. We visited Santa at the CVI (Center for the Visually Impaired) with other members of the BEGIN program. In other words, we were surrounded by children who are blind or visually impaired, their siblings, parents/guardians and the amazing people who teach our children at the CVI.

If you had suggested to me three years ago that I would be in that room at Christmas time...well, I would not have know what CVI stood for, let alone found how it pertained to our family. I don't even know if I would have gone into that room willingly, Trust me, this journey has not always been on my own accord. Sometimes God must throw us into our role- not ease us into it.

There in that room I found myself comfortable in my own skin, and in my role as a parent. Just being in a room where another parent approached Ivey without hesitation and knew exactly how to 'touch' her is beyond words. Witnessing other siblings and how they are so similar to Knox and Walker. Being with other parents who share the trials that we face with our children - all of them, not just Ivey - and physically relating to what a 'typical' day is like in the Sirmans' household brings peace to us. For me personally, my heart was filled by touching the other children, meeting amazing parents and having a bond, a connection, without knowing anything personal about them. I guess it is seeing our family in others.

Seeing other children with feeding tubes, monitors, other dis-ABILITIES beside blind isms reminded our family that this journey we are on is well worth hills and valleys. Seeing parents like us, smiling, happy to be in their skin just as I am happy to be in my own skin is well worth this ride. Harder times have come and gone, and they will come again, but for now, I can't imagine myself in any other place. Wouldn't want to be, even if you promised me a life....that was 'easier'.

Christmas is a joyous time. Thank you God for all of our joys, even the ones that have been our blessing in disguise. Thank you Lord for our friends whom we can only keep close in our hearts because distance seperates us. Thank you Lord for our family who is so blessed to travel this journey with us. And thank you Lord for our friends, those who choose to travel this journey with us, loving us and guiding us, just because they can. Thank you Lord for giving me a life I could have never imagined without You.

Tonight we will watch Walker and Ivey in the Christmas program at church. Another time I could not imagine without your help. Thank you Lord for the blessings of our community. 'God is good all the time, all the time God is good."

Merry Christmas from our BEGIN family!!!! Walker wasn't quite into all the cameras. Would or could any of you ever imagine yourself in this room with your child and feel the utmost peace and happiness that you have ever felt in your life? Feel that comfortable in your skin? It is the most wonderful place to be......thank you God for my amazing life...our amazing life as a Family!!!