Thursday, December 30, 2010

What I see...

When you look at this photo what do you see? Do you notice that it is unfocused? Do you see all the clutter of my living room? Or maybe you just see a "disabled" child?

I am sure there are so many different view points from each of you. I wanted to share what I see when I look at this photo.

I see.........

Hard Work
Long hours in a Physical therapy exam room
Tears of Pain
Tears of Joy
Sleepless nights
A Future
Quality of Life

I see Movement!

I have so many pictures of James being held in place or standing up for a split second while I snap and quick as I can. But I don't have many pictures of MOVEMENT! Pictures where you can see all the hard work he has put into making his body work. Yes, he has a long way to go but pictures like this PROVE that he is on his way. All the work is not for naught. It has all be for a reason . He is moving and it is beautiful!

Monday, December 27, 2010

Jesus' word will find you

For Christmas we got James a Veggie Tales devotional book for little boys. It was one of those stocking stuffers that I hoped he would like after we got into the routine of it but never expected him to really notice it. It has no pictures or colors. The wording is actually written a little old for James but the lessons are good. Christmas night we read our first devotional. It is important to Josh and I both that James grow up with a thirst for Christ.

I was shocked at how attached James has been over this book. He calls it his Bible book and has cried every night because I wont let him sleep with it. I love that he loves it but to be honest I think God has put such a love for it in James for me. I have been struggling with staying optimistic and focused on James positive recovery. We have hit a platue and I see so many other children that have had the SDR now starting to take independent steps or other big milestones that James hasnt reached yet. And it has been frustrating for me. It has been 3 years now that I have been a mother of a child with special needs and you would think that I have learned not to compare James to other kids by now but I havent. James is also having some new physical struggles in PT. His left foot has turned inward at a 90 degree angle and it is really keeping him from walking. He is so frustrated and that is just a domino affect on the rest of therapy. His water therapy has been canceled and I really think that has a LOT to do with his new tightness. I am going to pick up the slack by taking him myself to a pool each week until his therapist returns.

Getting back to my original point. While going through James' little nightly devotionals God has really spoke to me. The past 3 devotionals have been about frustration and having a happy spirit. I just find it beautiful that God can give you want you need even through Larry the tomato! And today we were given another reason to be happy. James stood independently without his walker or holding one to anything or anyone for 10 whole seconds! It was beautiful!
Next week James will be adding some de-rotation cords to his cute outfits. The Pt department thinks that with stretching and these cables we might be able to fix this new issue without surgery. James will have to wear these cables all the time for awhile so please say a prayer that they wont be too uncomfortable and that they will ease his frustration.

Wednesday, December 22, 2010

Merry Christmas

From the Pollard family to your family I want to wish you a VERY MERRY CHRISTMAS!

Saturday, December 18, 2010

Christmas through a photographers eyes

For those of you that dont know I have a growing photography studio . I love it! I love that I get to be my own boss, make my own schedule and do what I LOVE to every week. There are a few slight draw back to it though.

#1 Being that my own son is so sick of having his picture taken and being my model that anything that remotely looks like camera he looks down and refuses to look up. I think I might be causing him a complex LOL

#2 My poor family is always the last to get our Christmas card pictures done. In fact this year I just grabbed my camera and through something on James in our living room. (oh the photography shame!)

#3 I have become computer blind! I have stared at this computer screen so much that I might be going crazy. I have made so many Christmas cards and orders that I am seeing jingle bells and holly leafs in my sleep!

Now dont get me wrong, I am SO happy that my business has taken off so much that I can even say that I am remotely busy. I just will be happy to have all these orders done and spend some Christmas time with MY family. Dare I say that I might even break out my camera for some non work pictures!!

Thursday, December 2, 2010

Looking Back

Every year as I take down my Christmas Tree I am spend the time in prayer and thoughts about what the New Year will hold for our family. This year though as I was putting up my tree I reflected on the past 6.5 years. Now my tree will never win a decorating award and it certainly is NOT a "show" tree. It is the kind of tree I grew up with. A mix of 1st ornaments, mother's day gifts, macaroni art, and teacher gifts my parents brought home from school each year. Every once in a while mom would bring home an ornament from a special trip.
My Tree is no different. I like to think of it as a Hodge-podge of memories from each year. Each ornament I put up a think about when and where I got it. Some ornaments mark places we have been.

Some places like this one from St. Louis, will always remind me of James SDR surgery. Last year we were celebrating Christmas with a child that could barely sit up on his own and we had just been told that he would be wheelchair bound. But this year, after St. Louis, we are celebrating with a child that is walking to the playground at school in his walker!!

Some ornaments are homemade and make me think about the bright eyed children that spent a Saturday making such sweet gifts for me. I care for these just as gently as any store bought ornament.

There are a few ornaments that just make me LAUGH!! For a few years at thanksgiving ( when puff paints were all the rage) My family had a craft that we all worked on. Some years it was a quilt that we would all sign. and over the year when we realized that boyfriends and girlfriends come and go and that it looks odd to have larger puff paint smear by a name ;-). We moved on to ornaments. This was my 2005 creation! Now in my defense we were making "silly" ornaments......Silly isnt the word that I describe this one as now ( it is in the back of my tree)

And in keeping with my childhood tree, I have many ornaments from my days as a K teacher.

This is the ornament that I always let Josh hang. It was given to us by his grandparents. We dont see his side of the family very often and they arent involved in James' life, which is very sad, but it is our reality. But these ornaments remind me of better times.

And then there are the ornaments that mark time. Time in our lives that might be sad and overwhelming but remind me to live my life looking to my Savior. Some of my ornaments are the only connection James will have to Josh's Father since he passed away just a few months before James was born. This ornament was one that BJ ( Josh's father) would always hang on the tree. He would come over to watch me put the tree up and I would force him to put at least one ornament on the tree. And this was the one

Then there the ornaments that reflect our life with James. Oh how I LONGED for these ornaments to hang from my tree. Not just a symbol of a heartbreak that will never be here on earth but one that celebrated LIFE. And boy does he have many! 6 as a matter of fact ;-) This is my favorite. James was just 2 week out of the NICU and 6 weeks old. He was still SOOO very tiny that Santa held him in just the palms of his hands and just lifted him up to his face. his outfit was just huge on him too . I just think it is so cute and I love it!

Sometimes I think back to those days and I just wish I could tell myself to slow down and enjoy it more. I wish that I could tell myself that the next few years are going to be the hardest of your life but not to worry because they will also be the BEST years of my life too. I would tell myself to deal with my guilt earlier than I did and to not let it rob me of the GIFT I had been given in James.
So there you have it! This was my stream of consciousness as I was putting up my tree for 2010 Christmas.

Saturday, November 20, 2010

Thanksgiving and the Family

Oh My how I love Thanksgiving! It might be might favorite. don't get me wrong I LOVE Christmas but there is just something relaxed about thanksgiving to me. It is all the family togetherness and none of the gift-giving stress. My favorite part is that my Aunt Sarah and her family will be here like they have been for as long as I can remember. They make the trek down from NC and stay for several days. I LOVE getting to spend time with them.

I wanted to also make a very special request for a new friend. I have met some really awesome people during this whole process of the SDR surgery. Some in real life and some are Internet friends that I hope to meet one day. Well my new friend is one of those new friends. He son Cliff will be having the SDR surgery this coming up week. I have been praying for this family for awhile now but wanted to extend that prayer request. We know that God is in control but I wanted to ask for all of you to please pray that the doctors, nurses and everyone that will be involved in Cliff's care is under a blanket of prayer. Please pray that Cliff's mommy, daddy and family will be rested and feel at peace during the surgery. And of course please pray that Cliff will be calm and have a quick and smooth recovery after surgery.

As far as James news. Dr Park was very happy with were he was in his revovery. Dr. Park felt that James was right on track and in some points was a little a head. He was pleased with his lever of strength and his ability to get up into tall kneeling by himself. James showed them all how well he walking in his walker with and without braces. He also showed how we are working on getting him into using his canes. Dr. Park told us that he sees James being able to move from the walker to the canes very soon. James hips are better than pre-op! We were excited to hear such good reports.

There are a few concerns that Dr. Park adressed with us. James is having what is called Tibleal torsion. This means that from his knee to his foot there is a twisting. His left foot is turning in. We thought it was his hip causing his but we now know that it is because of the TT. This is not the best news and could mean that around 12 or 13 James will have to have this corrected. The plan of action for this is to work on therapy activities that support corrected positioning. we have time and James being so young on our side. Right now the bone is not twisted but the muscles are trying to twist it. We are just going to do our best to correct it without surgery. Concern #2 is James' heel cord on his left leg. When you dont walk and naturally stretch out your hamstring and heelcord they become too short as you grow. This is what has happened. So you see walking is not all just about walking. It affects so many other parts of your body. his right foot isnt too ba but his left heelcord is also contributing to the twisting of the leg as well. The plan of action for this is night time stretching int he form of braces that James will sleep in. Not too excited about that, but we will do whatever we have to. I dont want James toe walking since that is so very bad for that heelcord and the ability for James bones to grow correctly. We will do the braces for a year and then when we go back to see Dr. Park we will talk about if James needs Heelcrod lenghtening. Dr. Park think that he will but the good thing about having had the SDR we will be able to do a less invasive proceedure for this. In fact we should be able to do a out patient procedure that St. Louis does. That is pretty much all the medical info that we learned on our trip. It was a short and sweet trip but a good one!!

Thursday, November 4, 2010

Ortho Update

First I wanted to give a PreSchool update on James. I am going off what his teacher tells me and from the notes that I am given. I know that drop off has been great. He doesnt cry at all when I drop him off and the other kids usually say "Its James!" so I think he is making some good friends. Tuesday was a rough day I think. His teacher's aid said that he cried a lot. I think a lot of that was the fact that we started an hour of PT during school.

I know that the PT the school is using is a contract PT. I am not sure if she has been trained in pediatrics because from her notes she says that James is not tolerant of PT. And if you have been reading about James for very long you know that he works harder than any ADULT I have ever know much less a toddler. But I just climbed the hill of getting him a hour of PT in school, so i have to pick my battles for right now. I am not very happy with the therapist and the notes she has been writing me. It just seems like she isnt very willing to learn about James and what motivates him. It is frustrating for me and I KNOW it has to be frustrating for James. i have worked so hard to make PT fun that I am afraid she is messing that up. I mean I am in PT with James for hours EVERYDAY of the week, so I know that it is hard work to keep a 3 year old motivated. I am not new to this rodeo, but I dont think my experience is wanted.

I am glad that his teacher seems to be picking up where the PT is lacking. She is very willing to listen to me and not push my concerns and suggestions aside. I am the first to say that I hate being "that" mom but if it means giving my James the best chance in life to walk and be independent then I dont mind stepping on a few toes. I just hope it gets easier but if our life holds true to this pattern I can forget that ;-) I am researching getting an advocate but right now we have such a great teacher that I think she will help me get James what he needs. Today I was told was a wonderful day. He laughed and smiled a lot. He didnt cry once. I am glad they are getting so see the sweet James as well.

I picked James up from school a littler early today because he had his 6 month check with Dr. B his Pediatric Orthopedic Dr. Usually this in an appointment that has lots of tears because it has always been such a painful exam and James HATE getting x-rays done. BUT the super cool thing I had forgotten was that post-surgery James doesn't have the pain getting checked out now :-) What a wonderful change that was. He let the Dr. moves his legs around ( and he could) and he even walked for him. He didnt even cry when he had his x-rays done. WOW being pain free is a wonderful thing!!

Dr. B took a look at James hip that has been going in and out of socket. The bad news is it hasnt changed since before surgery....the GOOD news is that is hasnt changed since surgery . We just have to take the good and roll with is. His hip is unchanged. I am curious to see what Dr. Park thinks about that. Dr. B doesnt think it is causing any pain and I dont either. It does pop but James doesnt seem to care at all when it does that. He also talked about James tibial torsion that he has. This means James foot is twisting in from his knee. It will eventually cause bone deformity but right now there is nothing we can do about it because he is growing at such a rapid rate it would do any good to fix it now. I am not going to borrow trouble. We will just put what I can not change on the back burner for now. Dr. B thought that James looked wonderful. He loved James walking so well. I liked that the only tears that were shed were when James couldn't stay and play with the "girls" ( nurses that were loving on James)

Next week we will be headed up to St. Louis. I am very excited about finding out what Dr. Park and the PT have to say about James' progress. I hope they will be pleased with how he has done. I know that we certainly are!!

Tuesday, November 2, 2010

The view from here

Sometimes I am asked how I manage everything in my day. Can I be honest with you here on my blog?

I dont know!

Sometimes when the day is over and I finally sit down, I wonder myself how I fit all the "stuff" in one day. But we do and that is our life right now. I try my best to do it with as much grace and I can muster but sometimes I dont do so well. I know that can be short and blunt with those around me. I hope that I make up for it on the days that I am myself.

Its just that sometimes my view is clouded with therapists, IEP's, doctor appointments, medical bills and just STUFF of life with a child that has special needs. I know that I forget to look up from that specific view in times stress. But when I do I can see that the sights are pretty good from here too. I wanted to share a few positives of life with James so that you know that I really do see the blessings in my life as well.

Having a child with special needs gives you a different perspective on those childhood milestones. I also think that I have a special appreciation for the little things in life as well. Take Halloween for example, most parents might not give a second thought to their child walking up to get candy. For our family it took us 3 years to see James be able to walk up to 2 houses. It was beautiful and something that I will never forget.

James is such a joy. He loves to laugh and play with his kitchen. He is able to crawl on his hands and knees pretty much everywhere now. He doesnt army crawl pretty much at all anymore. He can pull up to the coffee table and the couch anytime he wants to. His favorite activity right now is to go outside on the patio by himself ( of course I am watching him) He loves to tell me "Bye Mommy. I go outside now" He plays with his sidewalk chalk and sand table. He can even throw a ball to his dog Sushi. He gets dirty and sticky. James is all boy and I love it!
When I get wrapped up in taking care of all the things he "cant" do I have to take a moment and remind myself of all the things that he CAN do!

Tuesday, October 26, 2010

Shelter in the Storm

I LOVE blogging! If you read my post as of last night you know that yesterday was a bad day. It was one of those days that guilt and grief took hold of my joy. But last night I got it out had a good cry. In fact, I havent had one of those breakdown type of cries in a long long time, and I think I was due. There is something about falling on your face before the Lord and letting go of everything that had built up in your heart and mind. And last night that is what I literally did.

I gave all that anger, guilt , grief and sorrow that was stealing my joy to my Savior. I stopped letting satan convince me that my God isnt big enough to take it from me. Of course I know that God wants all my burdens, I just sometimes forget that I have to surrender them to him first. He is there with the open arms. I am so thankful for that. If I have to walk around with what I felt last night I just dont know how I could get out of bed and breath each day.

So this morning I feel relieved. I am still struggling and it might be that each hour I have to re-surrender my thought to God but that is my focus. Give it to HIM until this storm passes. HE his my shelter today in the storm ,HE is my protection from this anger that is trying to control me right now, HE is my hope!

Fitting that we have Tornado watches today. I have a bit more of a peace about those today too ;-)

Monday, October 25, 2010

My Anger Vent

Warning I am having a pity party today! You were warned...

Today is just one of those days that I allow myself to feel bad. I try to do too many of these or at least I try not to stay in them for too long. About a year after James was born I realized that I needed some counseling to deal with the guilt I have over James' condition. During that counseling I learned that guilt and grief is very cyclical. I think I had been told that before but when you are so frustrated that you can seem to "graduate" from one of the stages it is good to have a counselor remind you that you are "normal" ( whatever that is) So that means that you can find yourself in acceptance and be trucking along with life and the BAM! you are smack dab in the middle of anger. Or at least that is where I find myself today. So here goes I am going to vent what I am angry about in hopes that it will make me feel better.

I am angry that people stare and my child! He is not some side show that you have permission to gaulk at as we try to grocery shop or buy a Halloween costume.

I am angry that it is ME that has to make others feel comfortable when their children stare. YES! children are curious but it is YOUR responsibility as a parent to use that moment to teach them manners and about tolerance.

I am angry that people feel that it is OK to just walk up to me and ask "what is wrong with him" I just want to scream at them "How rude! What is wrong with YOU"

I am angry that parents let their children come up and asks me why James is in a wheelchair and they just sit there and wait for an answer too. Dont use your children as pawns to ask rude questions you really want to know as well.

I am angry that I missed all those milestone moments that other moms gets. I read posts about them and it just kills me that I wont get those moments

I am angry that I have to worry about will James ever be able to live on his own.

I am angry that I have to be the "bad" mommy and cause my son pain

I am angry that my son is caused pain at MY hands!! ( it deserved two)

I am angry that my husband's family is so clueless and selfish about the life we live with James that they dont even bother see our side. I am angry that James will only have one set of grandparents that care and love him unconditionaly

I am angry that when we are invited to a playdate I have to do my homework to make sure James will have something that he can play on.

I am angry that people just dont get it.

Tonight I am ANGRY!

Jesus, I give you my anger. Please take it from my heart and my mind. I am powerless to do it on my own and I need you to free me from this tonight. Ephesians 4:31 Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice

Tuesday, October 19, 2010


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!!

Friday, October 15, 2010

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 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.

Monday, October 11, 2010

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!!

Friday, October 8, 2010

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!

Monday, September 27, 2010

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.

Thursday, September 2, 2010

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!!

Wednesday, September 1, 2010

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!

Monday, August 30, 2010

McWane Center and other tid bits!!

We have officially entered the LAST week of therapy camp, and I am soooo ready. Dont get me wrong I have so enjoyed seeing James progress so much here, and the Ronald McDonald house has made this long stay away from my family less sad. But I am ready to be back on my own bed, see my husband, my dog, my cat and my very own stuff! I know that James is ready to get back home too. He just isnt himself here. He is still sweet for the most part but boy oh boy does he have a short fuse.

Tonight there were a LOT of people in the dining room ( the dinner was YUMMY) and it was noisy. James just doesnt handle that level of noise very well. He played with the kids for a bit but we had to leave and let him eat in the room because he just couldnt take it anymore. It is hard to see him get so upset and overwhelmed by it all. So I know he will be happy to be back home. Even if it will only be short lived. ( Ill get to that later)

I took James to the McWane center today. The RMH gives the families a pass for the zoo and McWane center. How nice is THAT!! I was concerned that there wouldnt really be much for James to do , but I was suprised that he was able to participate in a lot of activities. He LOVED that there were buttons everywhere and he could push anything. It is a hands on kids science center for those of you that dont know. We had never been and I really want to come back with Josh and spend the day. I will post the pictures I took later.

Tomorrow we will begin our last week here at camp and it is a little bitter sweet. James has progressed SO much that I just cant wait to show everyone how much stronger he is getting. We still have a long road of hard work to go before he is walking independantly but he is on his way! We have amde such great friends here at the RMH. I have enjoyed our dinners together and just getting to know each other. We have heard some very sad things and there have been some families that have lost their children while we were here as well. This house is not a vacation spot but it is safe, beautiful and a home a way from home when you need a home life envoronment the most. I have really enjoyed it here. And when one of the ladies asked me to tell James' story for the RMH newsletter I was more that happy to do so. I will never look at those little donation boxes at McDonald the same. So plan to hear some ways that YOU can help me give back to our home for the last 3 weeks.

Well my little man is sound asleep and I am going to do a little work before I join him. I will let you know how tomorrow goes!!

Saturday, August 28, 2010

Turning 32 at the Ronald McDonald Hose

As a kids McDonald parties were really fun. You got to eat cake and chicken nuggets, sit in a big throne chair and play in the ball pit. WELLLL having an adult birthday at the Ronald McDonald house isn't as much fun come to find out. No ball pit to play in, the "throne" isn't as regal as one would wish for and my chicken nuggets got stolen!!

Yep that pretty much sums it up for today. My Mom, Jenda and the kids come down to see me today. That was GREAT! I needed to see some faces of people I loved around. I have made some great friends here but I am officially homesick. So it was good to have people that love me around. Mom brought me her Pot Roast which I usually request for my birthday dinner. And they brought me a nice big chocolate cake. They didn't get here until a little later in the afternoon so James was a little in the cranky and tired side. Jenda took the kids to her mothers and mom and I got to hang out. James had to lay down for a nap ( so did mom hehehe) . It was nice just to be in the room with her again.

So after they left, James took a good long nap. When he got up I was ready to go downstairs and eat my yummy birthday food. But it was not meant to be. Someone decided that it looked toooooooo yummy and they took it. I had it labeled and it was sitting right beside my bin. But I guess they were SO hungry that they lost all compassion and ate it anyway. SIGH!! Since James had napped so long we missed the house dinner, so I had to walk down to Moe's and get us something to eat.

Did you know that Moe's wont take your credit card if you don't have your ID with you??? I didn't but I do now. I keep my card in my little ID badge they gave us at the house with our room keys so I don't have to carry my purse around. But I don't have my license with it. And Moe's wouldn't let me pay unless I had my ID so I had enough cash to buy James' food but I had to leave my nice big black bean burrito there :-( SIGH again!

Well here I am in my room tonight and I have decided that I am declaring a Birthday DO OVER!! I refuse to turn another year older because this birthday just doesn't count. Yep that is what we will do! HAHA! You think I can just refuse to get older but keep the cake part???

Thursday, August 26, 2010

Camps days #6 and #7

Going to combine since I forgot to post yesterday! oops! Well if you have been following on James facebook page, I am sure you saw the abundance of videos that I posted yesterday. James had a great session on Wednesday. He had an early bedtime and I have discovered that a little Baby Advil is in order for out little man. He is sore and that seems to get him through the soreness. His daddy also surprised us during therapy with a visit!! James and I were very excited. Josh got to see in person James walking in his canes. He loved it!!

After therapy, Josh and James took a nap and I took a little break from having a 2 year old attached to me 24/7. One of the housemates here at the house discovered that I was a photographer for Now I Lay Me Down to Sleep and she asked me to come and take pictures of their son. God has given them the gift of time but sweet little C's time here on this side of heaven is nearing a close and I was happy to be able to offer my services to his family. I ask that you pray for this sweet family, and pray tot he God of miracles that His will be done. We know that he promises healing and I know this family longs for that healing to be on this side of heaven.

But after my session, I went over and sat by myself in the living room . It was nice to just relax a bit. I went and woke up the boys after a few minutes and we all came down and had dinner. Josh got James to eat an entire piece of pizza! And everyone was so shocked that one of the other moms actually took a picture of it LOL! Daddy has the magic touch I guess ;-) It was sad to see Josh leave but I am glad he could come down.

Today was another successful day at camp. James had a few meltdown with frustration but they were eased by the new listening therapy program that we started. It is specialized music that plays at a specific frequency and modulates to match brain wave patterns. It is used for a variety of sensory issues, but the therapist here use it on post rhisotomy kids that are having some sensory issues like James. We think he is getting overwhelmed when the gym gets crowded and loud. But when when we put the special headphones on he calms down. James has always been very musical and this is right up his alley. He isn't a great fan of the headphones but he asks for the music. Or as he calls it "My music" So we are going to use it for the rest of camp time and see what difference it makes. Anything that will help his PT goes smoother I am ALL for.

I did a Mommy no no today!! I asked the therapist what she saw and James' walking chances. YIKES!! This is a no no because without fail the therapist will either tell you they don't have a crystal ball or give you a VERY low ball answer that will crush your spirit. So I have learned to words these questions very carefully. I want an honest answer but I know they they cant see the future either. So I asked what she saw ans James' strengths in his potential to walk. I was shocked at her answer. She told me that she thought James would be walking with his canes ( if we keep up the hard work) in 3- 6 months. I think she expected me to be disappointed but I know there isn't a magic "fix James pill" and this answer was exciting to me!!

St. Louis told us that they saw James being able to use canes by kindergarten and taking independent steps by age 8. And just 9 week he is already in canes and doing really well with them!! I am thrilled with that!! So it has been a great last 2 days of camp. We are also going to go on Monday just so that James sticks with his routine. We think the change was part of the cause for the meltdown Tuesday. So instead of just handing out Monday we will go in and just watch int he stander for a bit.

I think that is it for tonight! I am going to try and get some sleep tonight

Tuesday, August 24, 2010

WHO sucked all the happy from the room??

I don't know who did it, but they need to bring it back right now. James has been just awful this morning. I do not usually use those words to describe my sweet baby boy BUT today I do. He woke up screaming this morning after not going to sleep until almost 11pm, and then he refused to eat. That has been par for the course here at the house. If you have been reading my blog very long you know that eating has always been a struggle for James. He likes to live on the edge of the growth chart to give me something else to worry about ;-)

But today he took an extra dose of unhappy and then proceeded to share the "love" with everyone he came in contact with. Normally people that meet James talk about how he is the SWEETEST child on the planet. Always has a smile on his face and is always laughing. Not today though! We walked over to therapy camp after a few time-outs along the way for hitting. Therapy actually started well. He did great during the heat and massage portion ( I would too) But as soon as he was asked to do any stretches or work it was over. The pt was great with him. She was firm but not overly so. We both tried to distract him and make it as fun as we could but after he reached out and bit the pt I knew nothing was going to work except a nap.

He got a few timeouts and they even tried to change therapist to see if he would respond better. He bit that one too :-( I was SOOOOO mortified! Those of you that know me know that a ill mannered child is probably one of my biggest pet peeves. I have seen what happens to children that are not given limits and the types of adults they turn into. That will NOT be my son. I know he wont be perfect but being polite and well mannered is not a choice in my home. So when times like these come up and I have to put actions to my words it is hard.

I now realize why my mother used to say "This hurts me more than it does you" she wasn't talking about the physical pain but the emotional toll it takes on a parent to want your child to behave and when they don't ,how emotionally it is painful to have to correct them. I "want" to just give in and just let him get what he wants and be happy in that moment, but at what cost to his future. I try to keep that in mind. God has given me and Josh the responsibility of raising not the child James but the man of God Christ wants him to be. And I try to take that seriously.

So even though therapy was pretty much a complete bust, they gave us this cane to practice with this afternoon. I plan on do that after James' nap. Then it will be EARLY bedtime for grouchy pants!!

Sunday, August 22, 2010

Camp day #4 and the Weekend

I have been having issues with Blogger so I have been late in posting up my post about James day #4 but finally Blogger decided to let me post. Here goes!!

Friday we had to take a little 20 min drive to the office of another PT that is apart of James' therapy team for camp. This therapist is the guru for stretching the post rhisotomy kids and I no agree! So does James!! But unlike the screaming matches James and I have over his stretches at home , it was a pleasant experience for James. She started out with putting hot pads on James legs for 20 mins and then will massage oil doing a deep massage and then the stretches. During the stretches James kept sighing. The therapist and I were cracking up :-)

After his massage, James worked on his tall kneel exercises. Then over to the big red ball. We also did some wrist extension exercises. I wish I could explain better what all James does in the 3 1/2 hours but they transition so well from one activity to the next it and so often it is hard to list them all. I just know that James is working HARD!!

So since I have talked a lot about what James is doing in therapy. I wanted to say a little bit about what I am going through here away from my support system. Josh and I have a great support system in my family. Unfortunately we are not close with Josh's side of the family. We are grateful for my family,and the love and support they have given us not matter if the agreed with our choices or not we always know we have a soft place to fall. Being away from that I feel a bit lost. Dont get my wrong I am in a nice and safe place here, but its not home. Doing everything 24/7 myself for James can get lonely and difficult. I dont think I realized just how much Josh and I were a team. I miss that. We did get a visit from Josh this weekend and that was great.

James hasnt been eating if we are downstairs, but as soon as Josh showed up James was his happy self and ate like a pig. It is hard to see the stress that being away from home causes James but I and trying my best to keep my eyes on the years down the road outcome. And the stress we are taking away from that life. It is a balance that I dont always succeed in but I try. Saturday James and I had a fun adventure. The Ronald McDonald house has passes to the zoo and a few other attractions here and we were able to go to the zoo. It was really hot but we had a great time.

James and I rode the train and I let him decide where we went. I figure the little guy doesn't get to decide much in his life he can at least choose what we see at the zoo. We spent most of our time at the kangaroo house and with the birds. I didnt want to see the Big cat because he told me they were scary. So we saw less scary animals :-). He LOVED the birds and took us back there a few times. After some strawberry ice cream and a trip to the gift shop we headed back home for a nap.

Oh and as a little note. We will be here for 3 weeks! I thought this was a 2 week program but when I was looking at the schedule I noticed that we are actually here for 3 weeks. Going to be hard to be away for that long but WOW what progress can James make after 3 weeks!!

Thursday, August 19, 2010

Camp Day #3

James and I almost didn't make it to camp today. James decided to wake up at 3am this morning share a happy "Good Morning" with me. I hear his calling good morning and when open my eyes I see little fingers waving and me from behind the half wall that separates my bed and his crib. It was pretty cute but would have bee cuter had it actually been morning. After about an hour of James serenading me with his raspberries on his arm, he went back to sleep. Needless to say it made for a late start to the morning.

We did make it though and had a great camp. James did LOTS of sit to stand activities today. Normal he has a little table in front of him that he will put his hands down on to help him stand. NOT HERE! He has to put his hands in front of him ( in a prayer position) and stand using just his legs muscles. He did 20 reps of that!! His little legs were noodles after that. He did it though because the pay off was getting to roll cars down and slide and what 2 year old little boy does enjoy that.

After his 3 hours of PT he had 1 hour of OT today. She wanted to do some testing on James but after 3 hours of PT she did really get great cooperation. He just keep putting his head down and saying " I go night night" *Mommy's heart was breaking at this one* But the trooper that James is, he did the whole our and even had a little fun in the process playing with the kitchen toys. Although I was concerned that he kept telling the therapist that he burnt the toast! He must have gotten that from my mother :-) Sorry mom didn't mean to throw you under the bus here!! haha

After camp we got to go have lunch with one of James' facebook "fans" that was in town and had contacted me. I just LOVE meeting the people that have prayed for James for so long. It really is nice to put a face to the comments. James was tired but a flirt! He thought her 11 year old was really cool because she was playing her music for him. It was a nice break from the therapy life we are living right now. So thank you Leslie!

After James' nap this afternoon, I think we are going to take a field trip to Wal-Mart and get some things. James is having muscle soreness from all the extra work so the therapist suggested some warming massage cream. Not really exciting events after therapy but we are doing well . This weekend I hope to have LOTS of pictures ( if blogger will start letting me upload them) because if the weather cooperates I am going to take James to the zoo. YIPPIE!

Wednesday, August 18, 2010

Camp Day #2

Whew!! I think I could just post that one word and it would just about sum up what I think about this intense camp experience. I am learning so much and what James needs to be getting in physical therapy. I hope our home therapist are ready for me to come back because I am being armed with some good stuff ;-)

James' session starts out with warm compresses on his legs and back, then they do a 5 min massage to get his legs warmed up. After that they do a series of stretches but all desquised at games that James actually enjoys. Today we worked a LOT on his tall kneel. This is something that we have done at home but the level of reps and intensity James is being asked to do is unbelievable. I didnt realize that he could be pushed his far and DO IT!!

He had to knee walk in what is call tall kneel. This means that he is up on his knees only and cant sit back on his bottom. He had to do a puzzzle inthis position, but the catch was that each puzzle peice what at the other end of the table and it took him about 10 side steps on his knees to get there. THEN he had to bring the puzzle peice back ( 10 more side steps) and put the peice in its place. Might sound simple but this was hard work for James when he has never even been able to get into tall kneel before the surgery.

We did more big ball excersies as well. James got to take a break after a bout an hour and half. Even on his break he had to stand in the stander but he didnt mind because he got to play with playdoh with one of the UAB pt students. She was cute and James was a flirt!! hahaha At the end of the 3 hour James got to walk out using this quad canes. He did even better than yesterday. The put blues clues stickers on his shoes and the canes to teach him the process. I think my jaw stayed on the flo0r because I just never imagined him in canes just 8 weeks out from the SDR.

After therapy we got a special treat becuase Josh came down to see us. It was SO great to see my husbands sweet face. James was happy to see his Daddy too. We got to hangout and eat dinner together. Tomorrow we are adding a little more work ( I know crazy) for James. We will start his OT part of the camp as well. So that means that he will go 3 hours in PT and then have a lunch break and come back for an hour of OT. That is a reciepe for one tired baby!! I am glad that he went to be tonight at 8:30 without issue because he is going to need his rest!

Tuesday, August 17, 2010

Camp Day 1

James and are in Birmingham for an intensive therapy camp. Today was his first day in therapy. Our focus for these next two weeks will be walking and strengthening. We will also be working on getting James a little more independent in using his walker or canes!! I never really expected him to be using canes right now but as of today those expectations are on my high list!! I say that because today I watched James take his first steps using the quad canes.

Ok first let me back up. We left after I had a doctors appointment that I learned I have a hernia...great! not! I am sure it is from all the lifting and tugging I have to do everyday with James. And it really isn't going to change much until James can get a little more independent in his everyday tasks.. After the appt, we hit the road without a place to stay. The Ronald McDonald House doesn't take reservations and when we left they were full but I just put it to prayer that a room would open up, and about 20 mins before we got there I called and they had just gotten a room for us :-) We got here and I was impressed by house nice it is. So clean and everything is really new looking and perfect for kids. Our room is really clean and nice. They also provide dinner every evening which is a huge money savor. Now the downside for us is that Josh can't be here with us. We haven't been apart this long in over 6 years and it is a little scary to be doing all this without him but it really is an opportunity that we cant miss out on for James.

So back to today's therapy. The center here is much larger than our at home. It is obvious that they get grants through Children's. Our therapist is really nice and very focused which I like. She had a clear plan for not just today but also the 2 weeks we will be here. We started out talking about James pre-op and how the SDR has changed his body.

I sort of sat back and let her work with James. She did really great with him. She made everything into a game but still really challenged his body. I was surprised that she jumped into the hard stuff right of, but I guess that is why we are here! She did some of the stretching we have been working on at home doing and then she did some big ball games. I have pictures and videos but blogger isn't working with me right so you can see them on the facebook page as well.

After about an hour of strengthening activities the PT moved to standing and walking. He got to take a break by standing in a stander and eating a snack. There were a lot of other kids in the gym and several came up to play with James. It was cute. One little boy brought James a car but James really wanted his Blues Clues sticker that he had LOL! After his break the pt brought out the canes. They have bit of a different philosophy than our home therapist. Here they want to get them in canes as soon as possible because they feel walkers don't give the best postures. I can see the pros and cons of each side really.

James did amazing in the quad canes! The therapist even said she didn't expect him to be that stable. She told me that she felt we shouldn't put him back in his walker! SHOCKER! I guess we will see how at the end of these 2 weeks he is doing before we make a big choice like that. But it really makes me excited to think of James being able to walk using canes. That opens up his world so much more!

I guess to wrap everything up, it was a great first day. I didn't expect to have as much to say about it as I did but they hit the ground running and I LOVE IT! I am so excited to see what James is doing after this camp. Maybe we can go up to see Dr. Park using canes ...wishful thinking but it is my heart! James is wore out and currently taking a nap and Mommy's isn't too far behind him! See you tomorrow for Camp day 2

Tuesday, August 3, 2010

We ARE still here!!

What a busy summer this has been. Not only the surgery but my photography business has really kept me on my toes. I am not complaining because it has been needed income for our family with all the extra medical costs. Just wish I could get 5 more mins of sleep ;-)

I have been lacking on keeping up this blog and it isnt because I dont want to, more of just having a minute to sit down and type everything out. James has been growing stronger everyday. He is really wanting to walk everywhere he goes. I have been trying to really let him have that mobility but boy is it hard on my back. I have be advised by therapist not to bend over to help him walk so much but that is coming from a therapist mindset and not from someone that lives with a 2 year old that wants to be walking. I just can look at his face and tell him to crawl when he asks me "Mommy I walk now" So me and my chiropractor might get to be best friends but my son will get to walk!!

We will also be headed down to a special intensive physical therapy program in 2 weeks. I have worked it out to where James will be getting 3 hours of PT 4 days a week with therapist that are very used to kids post rhisotomy. I LOVE all of our home therapist and they are GREAT at what they do, but I dont feel we can get that intense strength building that St. Louis recommend due to such full schedules. All we can get right now is 1 hour sessions, and that is great for day to day but I feel that James need s little boost to get his strength back up.

I aslo really want to bend the ear of the therapist that have 75% of their work load rhisotomy kids. I dont know what is "typical" post op and our home therapist dont really know either since they have never worked with a child this young right after the SDR. So some of the habits or issues we are dealing with concern me and I an not getting very clear answers. I get a lot of things I am doing wrong sometimes but not much encouragement that we are doing things right. It can be frustrating to walk on eggs shells and know that your therapist talk about you when you are gone. But I have to throw MY ego out the window and realize that I am doing what is right for OUR family and lives and it is ok if some people dont like me. Ahhhhh to be a "typical" mom would be nice but that is not our life and that is ok :-)

We have some BIG things happening in our family life right now as well. I will talk more about that when plan are a little more firm ( and no I am not pregnant) We are making some really big grown up decisions about or lives and what we want for the future. We are seeking God's plan and we know that He will guide us in all we do. I am looking forward to seeing what God has in story for us.

So that is where we are today.

Friday, July 23, 2010

6 weeks Post SDR

Well here we are! 6 week Post SDR surgery, and I couldn't be happier. James is really progressing so well, and I am really excited to see what the next few weeks and months will hold for him.

James has worked so hard to build his strength back up. We have hit a few road-blocks with sickness and just plain ole stubborn-ness but overall we is has been a smooth road. I have tried to find some intensive camp-like therapy but there isnt anything even close to our area. The only option that we have is in Birmingham and you have to be 6 months post op to go. So we are still looking into that but for right now we are sticking with our course of therapy.

6 weeks post op James can now crawl for up to 15-20 feet on his hands and knees, He can sit criss-cross ( Taylor sit) and he can even get in to side sit all by himself. As you saw in the videos, he is taking steps under his own weight and they are actually getting him places. We are still working on moving those steps into his walker.

Other little things that we didnt really expect are exciting too. James is talking much clearer and in long sentences. I have been able to understand him but now others can too! His hand movement is much better too. He can grip things tighter and pick up smaller objects. Another cool thing is that he seems to be switching from left handed to right handed. Which we always thought it was right handed because he has always stabilized himself with his right. So I guess we will see which hand he uses as we go along. As long as he can use one with quality, I don't care which hand it is.

This 6 weeks has gone by so very fast, and I am sure there are so many little things I am forgetting but I spend my days with my chin on the floor that it is hard to stop and make myself remember each little detail. That is why I try to have my cell phone with me so that I can video all the little things. In a way I feel like I am reliving his first year because I am getting to see all those milestones that I "missed" out on. I use quotes because I dont think I really missed out on them but instead God has allowed me an even sweet prize. I get to be so head over heels in love with my son and have more life under our belt. That just makes seeing these milestones even more exciting. It is also great to see the joy on James' face and how proud he is of himself.

Speaking of that sweet face of James. I have some new pictures to share of James. One of my photographer friends took James pictures and I LOVE them!! Kelly Clark Baugher Photography ! She is so talented and did a great job at capturing my son's spirit. I am happy to call her not only a peer but a friend. Thank you Kelly!!

Tuesday, July 20, 2010

Days like Today make it worth it!!

Every once in awhile I will get asked if all the therapy and stress we go through is worth it, and why dont we just let James use a wheelchair and move on. Well all I have to say to those people, well meaning you might be.............Watch this and tell me that James will never walk!!!!!