Spirit

I have been really feeling spiritual in the past weeks. I have been off work to take care of Claire.So, I have more time to think & reflect on things I don't usually have time for.

I feel this experience has brought me so much closer to God. I witnessed His love so strongly that day that I now feel the deep longing to satisfy Him. I seen Claire dying in our arms ,but knew we were in God's arms. I felt Him holding us & I knew everything would be o.k. But I also know now, that I am to do more with these gifts I have been given. I am just waiting on God to lead us on the next step of this journey.

Our family loves fall,it is probably our favorite time of year. We were married in the fall & I know I'm biased,but it was beautiful.It is also football season & our boys love it.We seem to settle in at home during the fall,snuggle more on cold evenings & have more together time. And of course the color of the leaves is always amazing.
We are just taking life & drinking it all in,good to the last drop!

Weathering the Storms

We seem to be getting better and better at weathering storms here at the tot 2 teens household. Claire has made it through this last storm like a hero. She constantly reassures us that she is o.k. by just being so full of life. She is jabbering away in that baby lingo that requires some kind of interpreter.She is constantly smiling & laughing, just happy,happy all the time. She is also getting used to her seizure medication.It does seem to make her a little extra sleepy some days,but other days it seems to get her wired.But all in all she is great.So, we are settling in to a new kind of normal once again.Thank you God!

The next storm actual involved the weather.The remnants of hurricane Ike came through the Ohio Valley on Sunday. We are not used to tropical force winds in this area,so we were in awe. There were trees down every where & it was biggest power outage in the history of Ohio,according to Duke Power Co. & half my family is still with out power today.Much to the excitement of my children,school was also cancelled!You gotta love a "snow day" with out the snow!My husband has also been excited about the latest storm too,because there is now an unlimited amount of wood to be cut.The wood pile is going to be a big one this year. We will be warm for the winter,yippee!

Will we be ready for the next storm,what ever shape or form it comes in? We have survived so far,so I am counting on continuing this ride of a life time for a life time & with God leading our way,I know we will be safe! He will get us through any storm that comes our way.

Nervous Normal

We are trying to let life go on as usual. It is kind of hard to be in a world of a pediatric hospital one minute & at home with the normal everyday stuff in the next minute. The answers from all the expert doctors while we were in the hospital were just shades of gray. We will never know what caused Claire to quit breathing,we just hope & pray that it does not happen again. It could have been her shunt going bad,it could have been a kind of seizure.One thing is for sure,it was severe & it was scary!Definitely brings meaning to "here one minute & gone the next",because that is exactly what happened.

We have been given a gift from God. We have been given a special needs child. She has made us better people,a closer family,& has shown us the power of love & prayer. I see a light in her eyes that is heaven sent. I thank God for letting us be a part of her life. We have been prepared for the "worst "for awhile now,Saturday the "worst "happened. Seeing the life leave your baby's eyes is not something we wanted to experience,but we stayed calm & did what we had to do. We praise God for letting us have our miracle remain in our lives & pray she is with us for a lifetime. We give it all to Him,& accept what He gives back.

Well,headed to bed to snuggle with my miracle for awhile,knowing God is holding us both.

Rainbow Weekend

I wrote my last blog on Saturday & then went to get some "camping food" at the grocery store.Claire went with me & so did my middle son Michael. We shopped,everything was normal,Claire was her smiling self,until we got to our campsite. I took her out of the car,put her in the high chair by my husband ,who was working at starting a campfire. I took a 5 minute walk with my youngest daughter Jenna & when we got back Claire was asleep in the highchair.So I took her to lay her down for a nap. She was hot & a little cranky,the camper air conditioner was broke,so I laid a blanket in the shade,& laid down with her.She threw-up,& with in 2 minutes,quit breathing.It really was that fast. I called an ambulance & then my husband & I started CPR. Her heart never stopped,so we gave her rescue breaths.She quickly was turning blue. We just kept breathing for her,we also kept her awake. She would open her eyes,but then just seem to fade away. It was like she forgot how to breath.She ended up being life-flighted from the site. I have been giving quick updates to family & friends on my carepage,so I will copy them here.
At The Rainbow
Posted Aug 31, 2008 12:07pm
Hey everyone...Just have a quick moment to ease everyone's mind. Claire was life flighted to Rainbow Babies last evening because she quit breathing on us. There was no seizure activity noted,Bryan & I started CPR,but only had to give her breaths,her heart rate dropped but never stopped...Thank You God.She has been on a ventilator all night and was just extubated about an hour ago,she is still requiring oxygen at this time. All the preliminary testing(and there was alot of it) has all been coming back good. We will know more after we talk to the neurologist.I know we will feel the prayers,Claire is as always proving to be the fighter...In Gods Hands...A very special thank you to anyone & everyone who was a part of yesterdays scene. She was life flighted from the scene(which happen to be at our friends house,we were camping & fishing for the night)Our volunteer fire department was excellent,& our flight crew commented to me when we arrived at the hospital how well everyone did.I did get to fly with her,what an experience.The EMT's also did good.Praising God today,thankful for all we have been blessed with!Love TinaP.S. My family & friends & our whole community is really just the best! I love you all!