Monday, February 22, 2010

How can two little letters hold so much in their grasp. As Mommies we say it all day. "No hit, Not don't eat that, No we cant watch 24 episodes of Blues Clues in a row" I hear those two little letters coming out of my mouth probably hundreds of times each day but they have never held so much fear to me.

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

Auction for James!

** Auction Closed** Congratulations to Ms. April Dill!!!!! Email me at with your shipping information and your Flower will be shipped to you. To make your payment just click the Donate button !! Thank you SO much!!!

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

Booked the Hotel

Well we are booked and ready to go. We are certainly stepping out on faith about where the funds are going to come from to get us there but I know that God will provide. He has gotten us this far and I trust that He will continue to bless us. I ask that you will say a prayer for me. I struggle in the area of not being stressed about how we will afford everything. And I am bad to take my stress out on Josh. I am really trying to allow God to work on me in this area but it is hard for me.

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

taking steps forward but looking back

I have been in reflection these past few weeks and a few of you that are new to our story have asked how this all happened. So I got to thinking that I should post a more detailed history about our Sweet Baby James! Warning this will get LONG :-) but hopefully it will be all you need to know and a few pictures to help along the way.

In the beginning....Oh wait! That is a different story sorry ;-) Josh and I have always wanted children and so pretty much right from the get go we wanted to start a family. We didnt worry too much about preventing because we were ok for a baby whenever but early in our married lives we got a health scare about me. I had to go for some tests and luckily everything was caught early and I ended up being just fine. We were told that if we wanted children it would be a good idea to go ahead and start trying. Message heard and we were ready!

After about a year we new that we needed some help so we got an appointment with a Fertility Doctor and we started on the journey of infertility. We did MANY test, shot, procedure and sadly we lost a few of our sweet babies along the way. But we knew that God had a plan for us and that we were meant to me called Mommy and Daddy. So we kept trying. Dec 2006 rolls around and we are in the fertility doctors office for our 3rd IUI. I will never forget watching the procedure and praying that THIS would be it! This would be the time that would work and we would get to bring a baby home! Sadly this wasnt in God's plan for us. Josh and I were pretty devastated and my body needed a break from all the needles and hormones that were being pumped into my body. So we told the Dr. that we wanted to use our 6 month break and then we would be ready for the next step of IVF .
Jan. 1st of 07 we embarked on a new quest for health and connection with what we truly wanted out of life. Of course a baby was one of those "wants" but so was a healthy and happy marriage. Going through infertility is very trying on a marriage and I will admit that it wasnt very pretty at times. The stress had taken and obvious toll on us and we need to get back to what we loved about each other. So we started hiking several times a week and up in those mountains we not only talked about our marriage but we talked about being ok without children. We dove into some real dark waters and planned out our lives without kids and being a party of 2. We needed to know that we would be ok if that was God's plan for us. And surprisingly we were. I learned that my husband loves me so much and that I love him just as deep that we will make it and be happy! We walked and talked and played! We found our JOY in those mountains.

So here comes March and it is our first real month off all medications and shots for fertility. I am not really even thinking about being pregnant because for 3 years I needed help. I just assumed these 6 months would be the same but when my period didnt show I thought that was strange. I called the Dr. Office and we all assumed that it was due to my PCOS which was the cause of my infertility. That night I found a little dollar store pregnancy test in my bathroom and I thought...why Not! And too my utter shock I saw 2 lines!!! I showed Josh and he didnt see them so we waited for the morning and took another one at 6am. 2 Lines again!!!! I fell to the floor laughing and crying and we both just were in shock. I drove STRAIGHT to my mother house ( 1/2 mile away) and about broke the door in knocking. I think I scared her to death. We cried and were so excited

We called the Dr. that morning and they had us come in for blood work. The initial blood work was not good. Things looked like this pregnancy was not going to make it but I had a different feeling about this one. I never really allowed myself to be sad over those number instead I just prayed. And slowly the numbers rose and we were out of the woods! OK flash through a WONDERFUL and normal pregnancy ( barring a little scare at 7 weeks!) We are at 32 weeks now!

Thing were going great. We had our Maternity pictures done on Tuesday and I remember when we got home thinking I might have peed on myself ( sorry TMI) but I was pregnancy so I didnt give it much thought. We had our regular OB appt that Friday and during the appt just before they were going to let me go I mentioned that James wasnt really moving like he had been. So my Dr decided to do an ultrasound and stress test. My levels were low but not yet to the point where they were cause for concern. ( so we thought) They sent me home on strict bed rest for the weekend and to come back first thing Monday and to be prepared to go to the hospital. That weekend I freaked out a little, but held it together enough for my mom to go and get some preemie clothes and diapers. There were a few scares that almost sent me to the hospital because James would stop moving and it would take a little bit to wake him. ( If I had it to do over I would GO in a heartbeat )

Monday Josh and I went in with our bags packed. James failed the stress test and they did the ultrasound but at first look the levels were up! Josh and I just didnt think that was right and I MADE them re-ultrasound me. Maybe I should say forced LOL! And come to find out the tech was measuring my bladder because there was NO fluid for James in there! We were sent directly to the Labor and Delivery floor. They needed to get antibiotics in me since my water had obviously been broken for several days to prevent further infection. During this time they let me labor until James started to show signs of distress. It was a bit of a blur and whirlwind of nurses and doctors and paperwork to sign. But they had be ready to be delivered in 17 min! It was crazy

Then after what was the scariest 17 mins of my LIFE , I hear the most amazing sound. It sounded a little like a frog croaking but it was James. He was alive and making A noise, any noise was music to my ears. He wasnt breathing well and in the first 10 mins of his life he actually stopped breathing and had to be helped. He was 4lbs 8oz and the smallest little person I had ever laid eyes on. But he was beautiful and ALIVE!

I of course had to stay and be sewed back up and watching Josh carry our struggling baby out the door was heartbreaking to me and yet beautiful. It felt like they were carrying half of my heart out the door! And yes there IS a baby in this picture in those blankets...some where!

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

We had to wait 30 days to bring our baby home. In those 30 days James had to meet several milestones that those of you that have has preemies know all too well! Off the vent was the biggie and at 7 days old he did that!
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.
We were told that he would be about 2 months delayed because of his early birth but they expected him to be perfectly normal. I even brought up CP to his primary nurse and she laughed and me for it. She said James was perfect and in fact really strong ( little did we know that was the tone already) So we went home and LOVED on our new baby. He was so tiny that the preemie clothes didnt fit until he was 3 months old. He had lost down to 3 lbs but when we brought him him he was just under 4lbs.
As the months started to roll along we did notice that he was behind. We expected that. But at 6 months he started shaking in a strange way. We were afraid he was have seizures but and after the EEG came back normal they told us it was Clonus. Which I now know is a clear sign of spatiscity in Cerebral Palsy. But no doctor with tell you that at 6 months!!!! I had to research on my own and force the doctors to listen to me. I knew there was something more going on. At 9 months James had surgery on his eyes because they were crossing. AGAIN another warning sign for CP and no one told us! It wasnt until I started putting the puzzle pieces together that we started to suspect CP. It was a physical therapist that was doing an evaluation that said the words for the first time. And still I was being told to wait!
I dont wait that well and I am glad that I didnt because James would not have gotten the help he needed so early if I didnt go kicking and screaming to specialist for them to look at my son. There was even one neurologist that tried to use different terms on me to avoid saying Cerebral Palsy! I quickly told her that I was aware of what see was saying and that it doesnt help to try and handle me with kid gloves. I need to know so I can get my son help. She also refused to give me the MRI that would confirm the CP diagnosis saying it is too early. But I just went over her head and go another doctor to prescribe the MRI and we got our official diagnosis.
Scary words to hear and then to actually SEE your son "damaged" brain on a screen will make you want to vomit. But me falling apart doesn't help James. What DOES help James is 7 being his advocate. And working my b-u-t-t off to do everything I can for him. Some ask if I am pushing him too hard, and all I have to say to that is that this is a snapshot in James' life. His brain had the ability to heal and I trust that my God still works miracles. I want to give James ALL the tools I can so that when his miracle happens, be it surgery or healing, he is ready! I don't want him to be grown and wonder what his life "could' have been like if we had gotten him more help.
So that is our story....long but now you know!!

Tuesday, February 9, 2010

just noticed!!

That this time next month we will be in St. Louis and we will KNOW what our furture holds!!! YIKES that means it is really close. I dont have really much else to share other than that!!!

Friday, February 5, 2010

friday firsts!!

This is just a short little celebration post. During water therapy today James was practicing his sit to stand with assistance like we do EVERY Friday on this steps leading into the pool. And as the therapist started to transition into another activity she turned a little to put the toy we were using to motivate James away. And he looked and her and said "More Please" and then push down on her knees and STOOD up by himself! OMG ....I usually don't say that but in this instance I really mean it!!!!

Dear God,

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

big changes for our little james

You have waited SO patiently! Sorry to tease you before but here is our good news for today.....

Yesterday Josh and I took James to his regular physical and occupational therapy appt. Now I will be the FIRST to tell you just how cute I think James is. I mean come on look at this face...

So not to be too braggy....Eh who am I kidding I LOVE to brag about my baby! He has made HUGE leaps in his gross motor skills!! His therapist started his appt just like normally and then James just started showing us all his new tricks. He crawled 6 feet on his hand and knees!! He pulled up to the table on his own and THEN................. Drum Roll PLEASE!!

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!
Ok so I am going to leave you will a very good looking picture! This was taken a few weeks ago and James was leaning on the bench here but now he can stand withOUT leaning!!

Wednesday, February 3, 2010

my thoughts as of today

Yesterday I was grumpy and a little rude to more than one person. I have since asked for forgivness and tried to take my happy pill and get over myself. I tend to wear my feelings on my sleeve and this looming trip to St. Louis is all I seem to be able to think about ( ok worry about) I know that being a worry wart is not good and frankly sinful. It is something that I struggle with on a day to day basis. I trust that God knows what is best for our family and I trust Him to give us peace . I really do, but my flesh gets in my way if I am being honest. I am always having to ask for God to release me of my worries. James' possible surgery is really kicking all that into high gear. Luckily I have a VERY wonderful husband that puts up with my crazy worry moments and had a wonderful way of bringing me back to center.

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!!