Quickie!

I just wanted to post a thought that I have been pretty excited about this evening. I am looking to order James quad canes because he is doing SO well on his walker!!! We are going to start teaching him how to use them. I am going to take it slow because I dont want to frustrate him but this kid just keeps raising the bar!! I cant keep up with him. Nov 15th we go to St. Louis for his 4 month re-check and I cant wait to see what Dr. Park thinks of his progress.

On concern though, I have been noticing that his right hip is turning out more and has started to make a popping sound :-( . I am hoping that it isnt a big deal but it doesnt sound good for his hip. We had hoping it would go completly back into socket but I dont know if it has. Please pray that this will be an easy fix and we can avoid a surgery is 2011!!

Take my Breath Away!

Yesterday I went to pick up James from his 2nd day of pre-school. I tried my best to be more on time instead of an hour early like the first day. But I still was a little early... I still have to be me ;-) As I was sitting in the line I got to thinking about all that we have been through this summer.

We have traveled 10 hours aways from our home after a year of research. In hopes that Dr. Park in St. Louis would be able to help James to a vertical life. We sat by our son's bedside while he was in the PICU and then struggle in those first few days of Physical therapy. Remember this

I sure do! It was just 19 weeks ago when James was struggling to stand and hold his own body weight and we were so thrilled! Just 19 weeks ago James took those first assisted steps in the PT department at St. Louis and the shock was overwhelming. I sat in the carline and did my best to hold on to those memories. They have a funny way of getting away from you, and that is why I blog. I love going back to those days and reliving those raw emotions.

Back to the carline..... I thought about bringing James home for the 2nd time in his life and he had a new body. We didnt have to pry his legs apart to change his diaper and he didnt cry in pain when his legs would spasm ( because they dont anymore) I thought about all the hardwork James has done and still has left. He and I have spent a lot of time together. During the 3 week program at Birmingham this summer James and got even closer, if that is even possible.

So turning his care, even if a small part, to school has been hard for me. So I sat with the other moms and wondered what their stories are. I am sure they have one too. When I saw that it was time to walk up to the door, I was excited so see James again. What I saw truly took my breath away.

They opened the door and my son that just 19 weeks ago couldn't hold his own head up because he was so weak, WALKED to me! I wanted to cry but decided that I didn't want the teacher to think I was more of a nut case than they already do (ie sitting in the car line for an hour). Instead I tried my best to stop time! In fact, I prayed for God to just give me a few extra seconds to enjoy this. It was beautiful. I know it was just a short walk in reality but I saw Independence. I saw a young man going to college. I saw a grown man living independently. I saw what true hope looks like. So many have spend 3 years trying to take my hope away and replace it with "reality" Thursday Oct 14th my hope WAS reality!!! And I enjoyed every second of it that I could. I thought about pulling out my phone for a video but I didn't want to miss any of it myself.

And that is just his first week of pre-school! If you are like me you just cant WAIT to see how James will shatter all those ceilings that people have tried to put on him in his short little life.

********

I know this is James' blog but I cant let this day pass without making mention of Infant and Pregnancy Loss Awareness day. Those of you that know me well and know our story know that today is a special day of remembrance for our family. I wanted to praise my Savior for giving me such a joy in my life. I have been so blessed and although we have known true sadness, I am a more loving person for it. I love harder because I know how your world can change in a moment. And so many mothers and fathers are hurting. I am glad that there is a day that they can remember and celebrate the love that they share.

My work with Now I Lay Me Down to Sleep.com has really opened my eyes to all the families that are in our community that have suffered such lost. I am so honored to have been allowed to document those precious moments with their children, but my heart breaks for them as well. So if you would take a moment and share a prayer for these families.

Dear Pre-School Teacher

I know that all Parents love and adore the children that they send to your classroom. But James is extra special to this Mommy. You see, James is the result of a broken hearted woman that so desperately wanted to become a Mommy to a baby here on earth. James is literally the answer to my prayers. I know at first you will see his physical disability. I cant change that, but it is my prayer that you will quickly see the smart, loving, tender-hearted child that I call son.

We have met and talked about the goals that we would like James to meet this year in your class, and those are important. I want to support you in your efforts to help James meet those goals. I will always be on YOUR side in James' eyes. But please know that those are just surface goals. I am trusting you with the most precious part of my life. I am trusting that you will begin James' experience with school in a positive way. I am trusting that you will treat James with the same determination that you share with all your students.

James needs to be pushed. Please do not be afraid to correct him in a loving way. Look beyond his wheelchair and walker and see that he is ALL boy. He needs boundaries and rules like any student. Those days that you are frustrated with him and he just doesn't want to cooperate with your lesson plan....please take a moment and breath. Before you add another label to his already growing list just breath. Remember that he is just a boy and they are stubborn regardless if they can walk or not.

I know that other moms might not be so worried about sending their children just 2 days a week, but this Mom is different. My prayer is that we are a team, and that you are patient with me as well. Just know that my heart is fragile and letting go of something that I prayed so hard for it difficult. My head knows that this is good for James but my heart is having a difficult time knowing that he is not safe within my reach. So I am going to try and breath myself but please be patient with me as well.

Thank you,

A Self Proclaimed Helicopter Mom!!

Happy Birthday Sweet Baby James

Today is a mix of emotions for me. I am torn between complete joy and utter fear. Of course the birth of my son was the most amazing and beautiful experience, even if it was such a surprise this day 3 years ago. I thought you might like to read the post I wrote while I was sitting all alone in my hospital room and James was in the NICU. Here is James' birth story.....


October 8, 2007

Well lets see where to start.........

Friday Oct. 5th I went in for my 32 weeks appointment. Not expecting anything out of the ordinary, but I happened to mention that James wasnt moving as much as he normally does that time of day. So the nurse said lets just double check, so they hooked me up to the fetal heart monitor and tracked his movements and heart rate for an hour.

Dr. Conrad came in and looked at the strip and said that everything looked just ok. Well my heart rate of course went WAY up because "just ok" wasnt what I wanted to hear. So Dr. Conrad took me into the ultrasound room to see what was going on. And I could tell that something wasnt right because he wasnt saying anything and he was moving the ultrasound wand around a lot. I asked what was wrong and he said that my fluid was low. Levels are supposed to be over 8cm and mine was 6.5cm so he said that he was putting me on bed rest for the weekend and that I had to come back in Monday first thing. He said to come prepared to go to the hospital to be induced. I just walked out of the office without asking any questions ( which is NOT like me).

I was in so much shock that I couldnt even think of anything to ask. I spent the weekend on bedrest and drank a swimming pool full of water! Josh and I pack everything up just in case, and Monday morning we went to the office. They hooked me up again to the fetal monitor and Josh and I sat in the little room just waiting.

Dr. Conrad came in again and this time I could see something wrong when he looked at the strip. He took us back to do another ultrasound and this time the levels were 3cm. The doctor sat down and told us that we are having our baby today because my water has broken. He said that I had a very high and slow break that has been leaking for probably a week. He sent us straight to the hospital for induction.

We got to the hospital at about 12 noon and were admitted for the induction. The started pitocin wide open as soon as I got in the bed. At this point I was very high closed and as green as can be. At this point the Neonatologist came in to talk to me about what was going to happen. He told me all about the vaginal delivery process because that is what we thought was going to happen. Josh and I were nervous but felt that we were in good hands and and family and friends started to show up it felt just like a normal labor.

After about an hour in the Pitocin I started to feel the contractions some. But I was able to handle them and James was doing well so we kept going. I was even able to take a little nap during this time. Josh and I talked and played cards for about another hour then the BIG contractions started to hit. I was proud of myself at how I was able to breath through them. They were coming every 2 minutes at this point and were very strong. The nurse came in and checked me and I was 1cm and 50% and -2 station. So the pitocin was working and I was progressing fairly quickly.

At 5:00pm Dr. Conrad came in to check me. And I was 3cm and 100% but James's heart rate was started to dip. Dr. Conrad sat on the edge of the bed and told me that he wasnt liking what was going on with the baby. He said that his heart rate was dipped like it would at the end of labor and that he didnt think James could handle several more hours of labor. He wanted to do an emergency c-section. I started to cry and at this point I was terrified. I was terrified for James and for having a c-section. I was so happy to see my Mom's face as they were wheeling me back. But I knew that Huntsville Hospital is a wonderful hospital with top notch doctors and a brand new state of the art NICU .

So at 6:00 I was in the OR They gave me a spinal epi at 6:10 and in 8 minutes James was out! 4lbs 8 oz and 17 inches long. I heard the smallest cry ever, but it was the most beautiful sound I have ever heard. They showed him to me for a quick kiss and Josh was able to carry him to the NICU. I will never forget the doctor and nurse talking about thier new boat and lake house while they sewed me back up. It felt like I wasnt even in the room. I wasnt feeling any physical pain but my heart had just been taken out of the room and whisked away where I couldnt see.

While I was in the recovery room Josh came back down and showed me the pictures and video of James's first moments in the world. He scored a 7 on is apgar and was put under the oxygen tent right away. By the time that they wheeled me to the NICU to see him they had put him on the ventilator and started IVs and monitors. All the emotion of the day flooded me at this point and I fell apart, but I was also so happy to see his sweet little face. It was a day that was scary, but yet the happiest day of my life.

As I sit here in my hospital bed, I cant help but wonder when I will get to hold my baby. His little face was such a blur as they took him away from me. All those wires and tubes coming out of him make him look so much smaller than he already is. All they let me touch was his little foot, and that just doesnt seem like enough. Doesnt he need to know I am here. I feel like he has been ripped from the only safe place he has know, but I guess it wasnt so safe after all. I just feel so guilty that my body has betrayed him. I just want him to be safe and in my arms.

I dont know when I will get to hold him but I hope it is soon. They have told me that they have started a drug into his vent to open up his lungs. I pray that there aren't any bad side effects from having to be on the vent and the drugs they are giving him. Nurse just came into help me down to go see him. I will update soon!




***************************

As I re-read that birth story, I am struck by just how simple I thought it was all going to be. I thought I we would bring a baby home in 3-5 days and it would all just be a story we told him. Little did I know that the next 30 days would be hard but they are just the beginning of James' story.

A letter to James on your 3rd Birthday,

Wow! These past 3 years have flown by. It seems like my last breath you were this teeny tiny little baby that was the size of a beanie baby. You have overcome so many obstacles in a short 3 years. This year you have amazed me even further. I am so proud of you James. I proud to be called your mother. I fill up with joy and pride when people comment on how beautiful you are and your wonderful personality.

At 3 years old you have more determination in your little body than I have seen in most grown adults. When I take you to physical therapy everyday, I know you would rather be home playing with your toys, drawing, or watching a Blue's clues, but you go with a smile on your face. You work so hard everyday to just do simple tasks but yet you still find the humor in life to giggle and laugh. Some days I wish I could just curl up with you on the bed and we could watch movies all day. I hope that you know that Mommy is trying to do my very best job at helping you be an independent adult. I know you get frustrated but thank you for working through it and fighting on.

You have touched so many lives this year. You have been in 2 newspapers, on the local news, and had a whole community came to your carnival. It must be the smile!! Your Daddy and I love you for all that you are now and all that we know you will become! There has never been one second of one day that I have not loved all of you. I know that this life might be harder for you because of your legs but I know that if any child can overcome and make the best of it, that is YOU! Me and Daddy will always be your cheerleaders.

Today you turn 3 years old, and I hope that you are having a wonderful day. I hope that this year brings so many wonderful things for our family. Last year we got to watch you take your first steps. I cant wait to see what you do this year!!

I love you Sweet Baby James!
Mommy

Did you think I had left you??

Well I didn't :-) James and I are still here, but every time I sit down to blog about what is going on I loose all my words. The past few weeks since we have been home from the therapy camp James has started to walk independently with his walker ( yippie!!) , we have moved to a new home, and I opened a new photography studio.

These were things that really weren't planned to happen all together but that is they way they fell. i have been doing my best just to keep my head above water with everything that has been going on. I haven't been doing such a good job. In fact last week I passed out at one of James Pt sessions and for the greater part of the day it was thought that I had had a stroke.

NICE!! A 32 year old stroke victim. That is a title that I do not want behind my name. So this weekend I have been really reflecting on what truly is important and what isnt. I have always enjoyed being busy and I don't think that will change. the thing that HAS to change is taking time for myself. I have always had good reason for not taking that time. They are great excuses, but wanna know the truth of the matter? If I am busy I cant be sad. If my days are filled with "To Do" lists I don't notice all those mothers in the grocery store that are complaining how they have to chase their children up and down the aisles. If I am busy I can keep from yelling at them that they should be praising God that their children are alive and running!!

See, all of you that think I am some sort of "Super Mom", now can see that I am just a tired mom just trying to hold it together. I am beyond grateful that I even have James. Every time this year ( around James' birthday) I start to reflect on just how easily I could not have James. God has blessed me so much with the ability to raise James on this side of heaven and I feel like I should be in constant praise for that. I try to be but the Devil knows just where to attack me.

So the bottom line to all that is that I am going to be doing some hard looking at my daily schedule as well as some of the activities that can survive without my help. Not everyone is going to be happy with me but I have got to be around for James and my husband for many many more years. The path I am on wont get me there.

We made IT!!

Well folks I am happy to say that James and I have survived 3 weeks of living away from home. James has survived not only that but VERY intensive physical therapy each of those days. We have celebrated a birthday, gotten hives, grieved with fellow housemates over the loss of children and met some friends that we will hopefully have for a lifetime. It has been an adventure and I am very happy we did it. James has made great progress and I am so proud of him.

I think I have told him so much how proud I am of him because everytime he finishes a task he will now proclaim " I did IT! I proud of you!" I am so glad that he understands that Mommy is alway in his corner cheering. Even if i am asking him to work so very hard his little legs are shaking I am cheering him on the whole time. How I wish with every fiber of my being that I could just "fix" all this stress he has to go through, but I truly do feel that from this James will do great things. God has a plan for this kid. I am just honored I get to watch it unfold!!

So lets talk a little bit about todays therapy session. The first 30 mins I came SO close to just grabbing my baby up and driving home. He was clingy and cried as I watched hives break out all over his little body. It BROKE MY HEART!! But then during a little Mommy break he asked for some of my ice. I gave him some, and it calmed him down. He kept asking for more and I just gave it to him. Well the therapist started working with him and ijust kept pumping the ice in his mouth because it wasnt crying. He walked 10 min on the treamill, no crying...more ice. He knee walked to his canes, no crying....more ice. He walk across the room using the best steps he has used so far, no crying....... give this child as much ice and he wants!!!!

The PT brought in one of the ladies that specializes in sensory issues. She explained to me that James is sensory seeking ( which we knew) After his surgery and the nerves were cut his little nervous system has taken quite I shock. And because of this his sensory system ( part of the nervous) is also in shock and trying to calm its self. I had known this because St. Louis talked to us about it before surgery. Well we have tried weighted vest and lots of other things but apparently James need the oral input. And the hard crunching of the ice is giving him the vibrations in his TMJ bone that is soothing to him. And then causes him to be calmer and more himself. It was like someone has flipped a switch with James today. He was his happy and calm self during the rest of his therapy. He actually got some of the best steps in of the 3 weeks. It was amazing and what "chompin" on ice did for him today!!

Hives and Homesickness!

James and I are ready to get back home. He is for sure! I am sad to say that his little body is starting to show signs of stress in the form of hives. We got up and ready like normal today. We went over to the therapy office and they put James down on the heating pads getting ready for his stretches.

As he was playing, I noticed a few welps on his upper arm. I thought they were bub bites but when I touched them they were very hot and then I noticed there were more starting to pop up. We all started to look him over ( he did not like this) and discovered that he was covered with red hives. He had gotten so very upset while we were trying to look at the hives that I decided we needed to cut the therapy day short.

I took him back to our room and gave him a dose of benadryl. After about an hour the hives started to fade. I called our pediatrician and our family Dr. for thier advise. Both agreed that as long as he isnt having any other symptoms then benadryl is really all the ER would do anyway. We James and I took a nap and rested for the afternoon. I discovered that I missed a cupcake delivery from a friend that came to visit and was turned away by the Ronald McDonald house staff, and that was sad to find out. I sure could have used the company of a friendly face today, but oh well.

So when James woke up the hices were gone but did come back this afternoon. And they were worse that before. I did the mas dose of benadryl the Dr. said I could give him. There was a Dr. a the therapy center that was rounding and he took a look. He said that they are stress hive. This really makes me sad to know that I an causing my child so much stress that he is breakingout in hives.

So tonight I am a little sad. I am sad that James is under so much stress and I feel to blame. I am left with some questions tonight that are keeping me from sleeping. Is my desire to see James walk causing him harm? And I hurting the one human being that I honestly would jump infront of a bus for?? And I trying to "fix" him when he really isnt broken??

I can honestly say that I try to do for James the best I know how. He is such a joy to be around but that joy had been gone these 3 weeks. I havent heard him truly laugh in 2 weeks. My heart is just broken right because I miss is happyness.

I am not only homesick for my husband and life, but I am homesick for my sweet James. I have been trying my best to get him to play and do fun things. And he will have fun but it just isnt like he does when we are home. At home his joy is contagious to everyone around him and here I just feel that people see him as the cranky 2 year old. At home when people talk to him he lights up and tells them a joke. Here he yells and hits his head on the back of his chair.

I miss him!