The Famiy Five...Summer 2010

So I made this video that is a glimpse into our summer.  It is nowhere near all the pictures we have taken but it is some.  It does include pictures made in the icu with Jeremiah.  They are the beginning of his testimony!  Yes, we got a horrible prognosis and I am so praying it is wrong and trying to Trust God and be ok with whatever happens, but boy do I feel like my heart has been ripped out.  It has been asked of me why we werent told , and even would we have adopted him if we knew.  We knew Jeremiah has severe cerebral Palsy and Visual Dysfunction.  We did not know to what degree or the type of cerebral palsy he had or if his vision was really bad or just a little.  We did have a few medical papers and of course pictures.  We did not take them to a doctor to be reviewed because it did not matter!!!  God GAVE Jeremiah to us!  No matter what he ever does or doesn't do it did not matter.  If Jeremiah lives to an old age or if he had not made it out of that Pediatric Intensive Care Unit, he is OUR SON and we will NEVER regret adopting him.  This prognosis is NOT what I expected, not what I wanted in any way.  And I pray God will use Jeremiah for a creative miracle.  I KNOW HE has used him already.  The pain I feel in my heart lately is not something I would have chosen, but it is more than worth it for the blessing of having my amazing Jeremiah in my life.  I am struggling alot with being sad for him, for the things in life I feel he is and will miss out on.  Right now my goal in life is to stimulate Jeremiah as much as possible.  To give him and Noah as amazing a childhood as I can.  No more living for someday I want to do this or that for the kids.  I don tknow how but we are GOING to do this and that.  Our first thing is saving up to go to Morgan's Wonderland Special Needs Amusement Park in San Antonio and stay a few days in a hotel!  Our goal is Early October!  Somehow, someway.  :)  Anyway, I just wanted to address the questions I am getting.  Yes, it hurts, Yes I am scared, yes I am sad, YES I am asking God why did this sweet angel have to go through all he has.  I am also praising God for every little thing Jeremiah is doing.  For a child with only a brain stem and part of his cerrebelum he is doing pretty good.  Smiling, cooing, laughing, drinking 6 oz bottles, eating from a spoon, and rolling over a couple times and sitting up in therapy a couple times!  I am so amazed by my angel boy.  And for a child that has "no visual center in his brain" he sure does react to light and shadow!  Anyway..the video is rather long but I hope you enjoy and please do share with me afterwards and PLEASE keep Jeremiah in prayer.  GOD IS ABLE!!!!!

Make video montages at www.OneTrueMedia.com

I can't believe I am writing this post...

So the news of today has hit me very hard. I mean we have know from the get go Jeremiah  had Cerebral Palsy and Visual Dysfunction and had a hard road ahead of him.  We did not know for sure the type or any of that until we picked him up but knew no matter how bad it was God was giving him to us and we were in love!  Jeremiah's battle for life upon our return home to the states was so scary and showed me so much the power and mercy of God.  I begged God in that PICU room to spare Jeremiah's life and swore we would learn to deal with whatever else we had to in order to help him have the best life he can.  God did spare him just as he did when Jeremiah was born!  I will always be thankful and KNOW that I witnessed a creative miracle when Jeremiah came back and lived through the Massive Sepsis, pneumonias and effusions. 

So, today we traveled to Monroe to see Jeremiah's Neurologist to follow up from all the tests he did on the 4th. The appointment did not at all go as I had hoped or even as I feared. I feel like I have been kicked in the stomach. The news is dreadful. The doctor said that "His prognosis is none" I was like prognosis for??... and he said "Survival". I am like excuse me! Through more discussion and seeing Jeremiah's cat scan pictures on a computer and him educating us and all Jeremiah basically has no live brain above the ears. Most of his brain is dead from the damage of what happened at his birth and did not grow.  He has very little living brain tissue.  This is part of the reason why his head circumference is so small for his age and has not grown the entire time we have had him and for months of updates previous to us picking him up.  His head is 15 inches (39 cm) and not even on the chart.  So he basically said the brain tissue Jeremiah does have will not be capable of keeping him alive long term. Eventually it will stop. I am like so overwhelmed. I asked if there is anything we can do. "NO" he says. The doctor does not know , or is not saying, how long this little living brain he has will keep him alive but was very clear that as he grows it will not sustain his life. I am floored still. I mean I know his Cerebral palsy is severe and I feared him saying he will never see (which he wont as he has no visual center of the brain, it is completely gone), or he wont do this or that but to tell me he is for sure gonna die because of the damage to the brain that caused the cp was NOT expected. I mean we worry because his lungs are so damaged from aspiration his whole life so Pneumonia is a risk and anybody with Pneumonia can die, but to be told it is going to happen at some point as he grows was overwhelming and very very sad. Its like as a mommy you want to feed them and get them healthy and see them grow but to know as he grows and all he gets closer to the time he wont be here :( I call myself a woman of faith and I KNOW my GOD is able and CAN heal his entire brain if HE chooses too. And I so want to beg HIM too and have and am. But I also know God's ways are not my ways and so I dont know what God will do. I also have to TRUST God and be ok either way. Right now I do not feel very ok at all. The sadness I feel is beyond compare.  As my little frogie boy smiles and me and coos at me and allows me to work his muscles and improves it is so hard to look in that little face and know that according to medical science his days are very numbered :(  I so do not want to accept that this can be real.  I am soo praying for a miracle.  Jeremiah's Dedication is this coming Sunday the 22nd and I will dedicate Jeremiah up to God just as we have planned but it will have such new meaning to me now.  Yes, God I dedicate this child to you, for you to use for your glory.  I PRAY and BEG you will perform and even bigger creative miracle and grow live brain tissue where this is none, and that my Jeremiah will live to adulthood and beyond, but I also have to trust you with my baby no matter what you choose to do and I WILL choose to trust you even when my heart is breaking beyond compare.  I can't promise I wont be sad, I will try so hard to just have FAITH!  I will try to be ok...for now I am not there though and in ways it feels like I will never be ok again.

Ramblings....

First I want to say Hi to anyone still out there following along. It has been a crazy 2 months and 1 week since Jeremiah was placed in our arms!

 

It feels like soo long ago that first night in the hotel room in Tainan when I looked down at my TWO SONS in my arms! I was soo thrilled to have finally met my sweet Jeremiah and in shock and awe at all God had done to get us there.  In a bit of disbelief still that God had really allowed me the honor of adopting TWO children!  I did not even know the full extent that night of why things happened the way they did or why the money came in just the nick of time but now I know it was so we would be there to get Jeremiah at just the time his body was needing it.  It amazes me still how incredibly blessed we are that Jeremiah's sepsis and all did not peak ON the airplane.  I can't imagine what it would have been like as frightening as it was to go through IN a hospital, but in the air over the ocean hours from a landing.  GOD IS GOOD!  I have battled so many times in my mind what I could have done different to protect Jeremiah more but through all of this and what all the docs are saying and the levels of things in his blood this illness had been underlying for a long while and was going to come evenutally even without the stress of a trip and a new family.  It was and is at times so hard to think that I hurt my child by adopting them.  I remember going to get Noah and he grieved so bad and so loud and cried and cried and I sat in the same hotel that first night and cried and said to Bobby we are hurting him and he said but its for his good.  Jeremiah did not grieve in the way Noah did because he is different but I believe he did and is greiving the loss of life as he knew it in Taiwan.  I feel awful when I think of his life since we got him because it has been so much sickness and pain and doctors and nurses and therapist and such trying to save his life and all.  I hate that he has gone through all this and I wonder what he thinks.  He is beginning to show recognition of me in ways and that so blesses my heart.  I so worried he would associate me with nothing but pain but prayerfully not.  I look at him constantly and I think how incredibly blessed I am that God had mercy and allowed jeremiah to live through Massive Sepsis , double pneumonia and double plueral effusions and all that went with that.  That he spared his life as a newborn when he went through all he did then.  God has a plan for this child's life and I get the honor of watching that plan unfold.  I cannot give God enough thanks and praise for allowing my baby to live when so many others die when going through even less sometimes.  I had no clue the day we picked him up how HARD this was going to be.  I ache for him in so many ways and the things he can't do, cant see, etc.  I want to give him the world and right now my focus is getting into his world.  I feel like I need to learn more and do more and that I am battling to do that.  You would not believe how hard it has been to find support in the way of other families with Children with severe cp, or with blindess let alone both.  I found a specail program not far from us for blind children but because of his severe cerebral palsy he wont be able to be involved.  and finding a parental support group locally for any of his issues has been impossible it seems.  Bu I am so blessed by and awesome Children's hospital , an amazing home health nurse and the best Physical Therapist on the planet.  Our PT has even taken time a couple times to ask how I AM doing with all this.  I am like I love this baby more than I could have even fathomed possible and I feel useless to help him.  BUT I WILL LEARN!  I will fight and research and travel and do all I have to for him.  I am not really sure why I am writing this post but you know me, lol  I am alot of times rambing on for no reason. 

Please be praying for my sweet Panda Boy Noah as you pray for Jeremiah!  Noah is special needs, just not the same type as Jeremiah.  He has really been having a rough time with his temper and his sensory issues.  He adores Jeremiah beyond anything I have seen in a child that age which is amazing.  He is ANGRY at me because previous to Jeremiah being in intensive care I never left Noah because he would freak.  He did freak when I had to leave him to be with Jeremiah in PICU and it was the most heartwrenching thing I have ever been through :(  It tore me literally in two and I thought how do I give them both what they need :(  I have always wanted tons and tons and tons of kids and I still do but this threw me for a loop of how do I give Noah me and be with Jeremiah in a situation where they have taken it out of our hands.  Noah could come in for small short visits but not stay in the room like he did no peds floor.  The problem too is that noone else seems to be able to handle him when he flips out and all and at times I dont do so well myself but for whatever reason most of the time his worst ones are if he wants me.  At the beginning I literally could not cook or anything.  It is odd to me know that I have Jeremiah who is very laid back and a large portion of the time doesnt care if I am around and then Noah who I can't breathe without him needing to be on me.  I have to really make time for one on one with Jeremiah and Noah does not like it.  After the hospital he is very angry with me and it has changed alot of things in that his other issues are kicked up more and he alot of times doesnt want me now and will scream for Celeste.  it breaks my heart.  At the hospital when it happend I cried my eyes out and kept thinking I have lost my first son to be with my 2nd son who might not even live.  Thank God he did live and Noah survived and I know in the long run all will be ok.  when he is really tired he still wants me so that is good.  He does not mind me like he use too and that will take some work.  Part of that is in effort to try and keep him happy Daddy, Sister, friends, etc did ANYTHING they could to make up for mamma being in back with jeremiah so much and he got away with alot, got lots of chips and candy and soda and folks bringing him gifts and all kinds of things.  Which is very sweet and I am thrilled he was so tended to and all but now that real life is back he is not so thrilled with not being able to have so much and all. 

 It amazes me that I have handled all of this as well as I did.  I remember sitting on a bench in the picu room watching Jeremiah's numbers go down down down and doctors, nurses, repiratory therapist, etc. scramble to try and keep him alive and I just cried and prayed to God to PLEASE spare him and give him a chance at life with a family.  I sooo want to do right by that chance God gave Jeremiah and I want to be the best mamma I can for Noah and somehow I have to get my act together and give them both exactly what they need medically, emotionally, physically, spiritually, educationally, and in every area. 

Thanks for letting me share and I hope I did not bore yall and I hope anyone still reads my blog!  lol  I do have a blessing of an older lap top that was given to me so if I can find the time will be able to post again more regulary!  THANK You to my sweet blog reader whose hubby had access to this new to me laptop :)

Pray for me if you have a minute, for my emotions, for my walk with God, for me to be the wife and mother I need to be and for me to learn all I need to in order to help my boys with their special needs.  Also please pray for a sweet new adopted in my heart daughter of mine!  I have know her most of her life but not seen her in several years and through some events she is estranged from family but close by to us and in my heart I just feel like God has given her to me to be an adoptive mommy of a sort to a newly married young woman she is.  She is a dear friend of my amazing daughter and we have been blessed to have her back in our life on a more regular basis :)  Pray too for my baby girl Celeste!  She got hired at the blood bank she wanted to work at and will begin her first job as a working Phlebotomist on the 23rd!  :)  I am so proud of her.  I know my time with her back home with us is limited and I am treasuring every moment!  I am praying she will be able to save money, get a car and save money she needs to go back to Christ for the Nations and finish her training there she had to leave because of no funds or sponsorship.  My heart aches for her to have the desires of her heart and to sit and watch God continue to use her in the lives of His people!

Night all, I send you my friend Kisses in the wind! :)