Monday, February 22, 2010
In 2 weeks from today we will hear yes or no on James' SDR surgery. 2 weeks from today a physical therapist and and a world renowned neurosurgeon with make a judgement on my son. They will test, and stretch and do whatever it is they need to do to deem him "worthy" of this possibly life changing surgery. Then they will say yes or they will say no. My life feels like it is on hold until I hear one of the two.
Josh , James and I are still going about our day like everything is normal, but inside I keep thinking "What if they say no" What will I do with those words? How will I make the new plan. WHAT is that new plan? Will I be able to breath after hearing that word. Of course outwardly I tell everyone that we have been told that James is a perfect candidate. Everyone one of our therapist have told us that this will be great for James and that they don't see any reason that they would say no. But on the inside the fear of those two letters is eating me up. I know that fear is not of the Lord and I have been trying my best to give this up but I am struggling with it.
What happens to us after no? What happens to James after no?
Those two letters are burned into my soul right now. I just cant seem to escape from them and the fear of hearing them. I know that we will move forward and that no is NEVER the end for James. Josh and I have been told no many times.
" No, you will not be able to have children"
"No, your child will not be coming home with you from the hospital"
" No, your child will not develop like other children"
"No, Your child is not allowed to come to daycare here because he is disabled"
"No, you child will not walk"
How I despise that word NO!!!
So, I although I am terrified to hear this judgement I know that if we do hear no it will not be the end for us. I have faith that God has a plan and my prayer is that I will be strong enough to handle the No's in not only my life but also in James'.
Every mother wants their child's life to be paved with yes, but that is not the path God has chosen for James. I just hope that I am strong and wise enough to show James that no does not define you it only makes you stronger.
Thursday, February 18, 2010
I might just have the BEST friends and family on the planet. They are so willing to "jump in" ( sorry I couldn't help it) and help our family. We are going to have a little auction here on Jump in for James! One of my Best friends Christina is SUPER crafty and also a very talented. She approached me a few days ago with what I thought was a great idea.
She is all the time making beautiful little creations like this cute shirt she made for my son to match her girls dresses for the Elmo Live show we went too.
She has created a beautiful flower pin that we will be Auctioning off. 100% of the proceeds that are collected in this auction will go towards our upcoming and future trips to St. Louis for James' SDR surgery evaluations. I really think this pin is just beautiful and to know that it was handmade to help my son is truly humbling. Here is a little description from Christina herself:
Goodbye Winter Blues Flower Pin: Accessorize your favorite spring blazer, headband or belt with a sassy flower pin made from Amy Butler's Daisy Chain fabric collection. It measures approx. 5 inches across, including large covered button center, and has a stainless steel safety pin back covered in soft fleece.
What to know how you can own this beautiful pin? Glad you asked.....................
We are going to make this pretty simple. In the comments section of this post, just give your name and your bid and TahDah you are in! As an added bonus anyone that matches the Highest bidders bid you will be entered into drawing for a FREE bonus gift made by Christina as well!! The auction will last for 2 days only ( Feb 18th0 Feb 20th) and the winner will be announced right here on this blog. I will announce the winner and then you will email me the address you want the pin shipped too! ( FREE SHIPPING)
Simple, I know you are excited to get the bidding started so here ya go. Bidding starts at.....$15.00
Monday, February 15, 2010
I am excited that have a place to stay. I SO wish that the Ronald McDonald house would let use them for this visit. But they don't allow you to check in on a weekend if you are a new patient, and we have to since our appt is 9am Monday. I guess it just means that for the surgery we wont be new patients so we will be able to check in anytime. I am just going to look on the bright side. I am happy to say that I found a nice hotel that offered us a good discounted rate because we are coming for and appointment. That is a blessing!!
Now to keep James WELL for his appointment! Unfortunately he got sick last weekend with a respiratory infection and whenever he gets sick for the first time in the winter it just seems that he will not be sick on and off for the next month. I guess his little immune system gets weak and then everything that is flying around he will get. Right now he still had the cough but has added a stomach bug with fever too it. He is running a 102-103 fever and even with Motrin it is 101. Making for a worried Mommy and Daddy but a relatively happy James because he gets to watch Blues Clues all day! LOL
I have more to say but the pop-cycle that I gave James looks like it will be make its appearance soon. Gotta run!
Friday, February 12, 2010
I went to recovery and Josh stayed with our son. They worked on him and tried to keep from intubating him but his little lungs were just too young. He needed help and medication to make his lungs inflate. So he was placed on the ventilator. After recovery the rolled my bed to his isolette in the NICU and seeing him with so many tubes and machines made me sick to my stomach. I broke down but was so happy to see him at the same time.
James had several ups and downs in the NICU. I guess I just thought he would need a little help int he beginning and then he could go home with us. I was wrong
After 7 days we FINALLY got to hold James. It was heaven :-) He still had many thing he had to do but I got to feel him in my arms and it was what I had prayed for for so long. James had lots of issues with feeding and keeping his body temp but Oct 31st we said goodbye to the NICU.
Tuesday, February 9, 2010
Friday, February 5, 2010
Thank you for this week of encouragement. You know how I needed it. You know my heart of hearts and how I was feeling weary of the path we were putting James on. And like the true and wonderful Savior you are, You show me that YOU are in control and YOU are going continue to work miracles in our Sweet Baby James. I praise you for these milestones. I thank you for easing my heart and letting me know we are doing what is best for James.
Thursday, February 4, 2010
James pulled to standing with very little help. And stood unassisted for 2 whole minutes. Now those of you that are reading this that have "typically" developing children you might not understand just how big this is for us. So I will put it this way.
Our PT said that when we got to St. Louis in March they are going to look at the evaluation she filled out in Dec and think this is a different child!!
But I am here to tell you that this IS our James. He is the kid that will show everyone just how determined and strong he is! James has worked so hard to reach these goals. And in fact we have had 3 therapist in the past 2 days tell us that they never expected James to progress this much. Now here is a the bad of the good ( but Ill take it!) That KidWalk that we JUST ordered well guess what???? It is actually holding him BACK! 6 months ago when we ordered the KidWalk James could not sit totally unassisted, he could not hold his own weight without his braces in standing, and his truck ( upper-body) strength was very week. I was told that he would not be able to hold himself up in a reverse walker. Well his showed them because he is now learning to walk in the reverse walker. How cool is this kid!!.....
The KidWalk is of course still be used as a stander and I have worked it out with the seating company that after the surgery they are going to give us a reverse walker for FREE! How cool is that!
Wednesday, February 3, 2010
Today I am happy that Josh is here to do just that, bring me back to center. His work has gotten very busy since he got a promotion (Thank you Jesus) The downside that is he is working many more hours and that means I spend a lot of my day talking to a 2 year old and not another adult! That can be hard. But TODAY Josh is home and we are enjoying time to talk and both come back to center! Ahhhhh
Speaking of up comming pr-op appts. We are officially under one month before we leave for St Louis. Today I am planning on trying to find a hotel that we can afford. Please PRAY that I can do this. We have been saving every penny we can and even selling somethings for this one. We didnt really expect to be traveling up there right now but duty calls and here we go :-) I know God will provide all I have to do is trust. Please pray for me that I can Let go and Let God!!