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Monday, March 29, 2010

God is still in the miracle business

Not that this is a surprise, or shouldn't be, it is just that the thought that my Savior that lived and died for me would reach down and touch my son is very overwhelming to me.

Today I took James to his orthopedic doctor. This is usually not a very pleasant appointment for James or me. It requires a lot of waiting , painful exams and scary x-rays for James. I did my best to talk it up all day. I also asked everyone on his Facebook Fan page to say a prayer at 3. I made sure James got at least a little nap before we went. I had done all I knew to do to have a successful appointment.

When arrived and it was yet again a hurry up and wait game. We had to wait 2 hours in the large waiting room with absolutely NO toys that children in wheelchairs can play with (annoying) But I had brought crayons and LOTS of paper for James to draw on. We also drew on a few Highlights mags. After 2 hours and 15min we finally got called back only to have to wait 30min in the little room. Sigh!! Dont they know 2 year old don't wait well. Anyway Dr. Buckley came in and told us that he was concerned with the x-rays I brought in from St. Louis. My heart jumped because I was SO afraid this would mess with our surgery date. He confirmed that James' left hip is showing it is 50% out of socket.

He wanted to do new x-rays just to make sure. I was not too happy about this since we had JUST had these done and our insurance will not pay for them this close together. But they had to be done so I of course said yes. All the prayers that James' fans were saying were answered because today James did not shed 1 tear. Not even during the x-ray. At first he wanted to cry but they let me sit beside him and sing some songs. ( I might one day glow green from all the x-rays I have had to sit in on)

After another 15 min waiting Dr. B came in and said he was shocked. He showed me the before and after x-rays and here is where I felt like stopping everything and praising my Jesus right then and there!!

James' left hip is less than 25% out of socket. In 6 weeks his hip has improved 25% Dr. B said that he really was amazed that he has had such an improvement. I just told him that this little guy has a LOT of people that pray for him everyday. He just smiled and told me that he was fully on board with the Rhisotomy in June. He said that he thinks James will greatly benefit from it and he expects his hip will got fully back in place 6 months after.

I don't know about you but I know that I was witness to God touch on my son today. Thank you for your prayers for my son.

Praise you Jesus for your ever presence in our lives.

Saturday, March 20, 2010

Carnival

I am working on getting James' fundraising carnival together. I am starting to get pretty excited about it, but the time is slipping away from me to plan it. I am so blessed that Josh's aunt is helping me get all the ideas together and nail down some details.

A few of the key people I count on to keep my feet on the ground have been out of town, and I have had to get this process started on my own. Scary!! lol I have good ideas and lots of plans but sometimes the planning and getting things done can bog me down. I have accepted this about myself and become quite good at deligating duties that are not in my skill set. So far though I think I am doing pretty good. Here are a few details that we have nailed down.

The date is May 2nd. Sunday afternoon from 12-4. We are having it at a local chiropractor office since they have a nice big outside lot. I will announce exactly where later since I havent asked if I can put the name on my blog. We are going to be having a real firetruck that I am going to do pictures for the kids, Moonbounces, SnoCones, Hot Dogs, Facepainting, Pony Rides.........Now doesnt that sound FUN!!!

I think it is a perfect after church activity! So stay tuned!!


***************
On the James front. He is doing really well with his new excersise program. The stretches are very difficult and they can be a little painful. I try to make them as fun as I can. When Josh is home we try to do them together with him and that seems to help. There is one that we are really focused on. It is called Dorsiflex. This is moving your foot basically. If you can tap your foot then you can doriflex and I bet you can walk as well.

Dr. Park told us that the #1 indicator of walking is the Dorsiflex. He said that if this is present after surgery then the child will more than likely walk independantly and the better that dorsiflex is the better and more natural the gait will be. So as you can guess we are really trying to practice this. Right now James can make very small movements toward dorsiflex and we are praying that this means he will have a better dorsiflex after the surgery.

Tuesday, March 16, 2010

New Routine

I feel like this is a post I have created a few times before. Changing my routine has never really been that easy for me. I like to have a plan but I tend to like it to be the same for awhile. Raising a child with a special need has taking that part of myself and turned it upside down because I am always having to "drop back and punt" I get comfortable doing things a certain way and all of the sudden it all needs to change.

I find myself having to change up our routine yet again. This morning as James was eating his marathon breakfast like he does every morning ( cheerios one by one by one by one...then 2 sausages THEN he asks for breakfast LOL) I started to go over his pre-op exercises. I have been putting them off for a day or two just because I knew they would make me have to change how we operate.

You see James and I are a team. Usually if you see one of us the other is not too far off, and he and I both like it that way. I never really thought of myself and as a stay at home mom. I always thought I would be a working mother. But God had other plans for us and I love it! I love that I still get to pursue my photography when I can but my main focus is James. So as I reviewed the pre-op plan I started to re-shape our days. I felt a little frustrated with myself that I was having difficulty fitting it all in. I try to keep a good balance for James. He IS a 2 year old after all and I don't want his entire life to be therapy, but on the other hand this is such a small window of time in his life that we can do this much therapy. It is a balancing act for sure.

This new plan doesn't have anything that surprises me really. Most of the exercises we have done before. It is just the amount that need to be done daily. I tried to get them all in this morning along with doing some treadmill but it was torture for both of us. So back to the drawing board. I will get it in but figuring out how to fit all the puzzle pieces together and still have a life is proving to be difficult!

I a happy note! I am working on our big Fundraiser we are planning for James. Details will be forthcoming but I am getting pretty excited about it. So I hope everyone will be ready to come out and help us Jump in for James!!!! lol how cheesy is that!!

Saturday, March 13, 2010

St. Louis in pictures

I just wanted to share some of our pictures from our St. Louis trip





Driving into St. Louis
Best Italian EVER!~!

Mommy and James waiting for Dr. Park with a Book


Yes! James is quite spoiled! He got presents from his Great Aunt for the trip

Visiting the Monkey at the zoo. He talked about these for days!

More to come when Blogger with cooperate with me!!








Thursday, March 11, 2010

yes

I am sure most of you are aware since you are probably fans on James' fan page ( if you aren't I encourage you to click to join cause you will get the day to day goodies James is doing) that James was accepted by Dr. Park as a patient for the Selective Dorsal Rhisotomy surgery! Excited is not even close to what we are feeling right now.

Our trip was really easy and fun. James traveled SO well and didnt fuss once ( well except when his Blues Clues dvd was over and he needed a new one) He took a great nap on the way up, so did Josh, and after lunch we started the dvd player. I dont think we heard another peep out of him the rest of the trip LOL! Our hotel was HUGE and really nice. We got a suite that had a living room and a bedroom. I have stayed in these before but was really surprised by the size of this one. It was really clean too and I felt safe for James to explore and play.

I didnt sleep very well the night before the appt. Not that not sleep is really a surprise for me but I swear the clock was turning backwards that night1 I just watched the time tick by and mostly prayed. I prayed for so many things that I dont even think I can list them here. But it was actually a really important time between me and God and so the lack of sleep wasnt really that bad.

We got to Children's hospital at around 8:15 that morning. Found a parking place and got to the Neurosurgery department at 8:30. We signed in and filled out more paperwork then just waited to be called. James enjoyed having his daddy to play with and we were called back at around 8:50. They took us to a room to view a information video. It was really review for us since we had been reading and researching this surgery for a year now. But it did have a clip of an actual surgery which was cool.

After the video was the PT evaluation. The head of PT came in and talked with us a little about what she would be measuring for and watching for. James was a little afraid of her and cried a little but I gave him a pen and he enjoyed drawing on himself. That seemed to ease his fears lol! The pt tested his range of motion and has James walk in his walker for her. He did really great. She then left and came back with a big stack of papers for our home pts and the home exercises for use to do pre-op. We have assumed that the answer was yes since she brought us the YES packet. I tried to not get my hopes up too high though.

Then we were moved to a larger room to wait for Dr. Park. He came in with all his meds students. James was busy playing and didnt even notice as he came in. He talked with us about the surgery and what the requirements are. He went over a LOT of information. I am glad it is all written down because there is no way I can remember all that. He watched James for a few min. and then asked me to take his braces off and have him walk in his walker. YIKES!! James has never even been in his walker without his braces!! I was nervous!

No need though! James did better than I have EVER seen him walk in his walker. He walk all the way across the room with the biggest smile on his face. THEN he crawled on his hands and knees back to his toy on the other side of the room. I almost laughed! James has never crawled on his hands and knees that far. In fact he just started crawling like that about 2 weeks ago. It is beautiful to be witness to actual answered prayers!!

Dr. Park then told us that he thought James was a very good candidate for the surgery. He explained that he felt James had lots of potential once the spatisity is removed. Dr. Park showed us on James what is called clonus. I knew what it was because we used to watch it take over his whole body when he was an infant. But I hadnt seen it for about a year. Dr. Park produced it right off. This is a clear sign of spatisity. Clonus looks almost like a seizure when it is all over but James just has it in his legs now. Basically his little legs shake in certain positions.

Dr. Park was very kind and answer all of our questions very well. He didnt give us the "doctor" answers and try to hurry out of the room. He took his time and really went over everything in detail with us. I feel very informed about everything , and in good hands. Dr. Park even took us to his office to explain James MRI images to us. In Fact Dr. Park told us that he was surprised but all the great things James is doing because on his MRI the damage shows that James should not be able to be doing what he is!! I wanted to starting praising God right there for touching my son's brain and healing it so that he can have a beautiful future.

There have been so many nights that I have prayed for healing. For God to take the CP from James . Even though I prayed this I never really thought it would happen. But it DID. God was healing my son's brain. He WAS repairing the damage that was done! I have been witness to God healing and I didnt even know it! It just goes to show me that God is always working even when i am not putting all my faith in what He has promised He will do. My mouth is officially zipped! Miracle DO happen, God is STILL in the healing business and I have a beautiful 2 year old in my home playing with a mag-na-doddle to prove it!

After our appt we took James back to the hotel for a nap. My cousin and his wife that live close came up and took us to the St. Louis zoo when James woke up. We had so much fun. The zoo was beautiful and we enjoyed getting to pal around with family that we dont see very often. Pictures to follow!! They took us to a GREAT Italian restaurant called Zia's. YUM!!!!

It was a great trip! We even enjoyed the trip home. Now starts the hard part. We have lots of funds to raise and exercises to do. But I know we can get it done. God has brought us this far and He wont let us down. James surgery is June 10th !!! Doesnt that sound like a good day to change a life? Does to me :-)!!!

Sunday, March 7, 2010

Hello St. Louis

I am typing this post in the comfort of our hotel. James is sleeping in the bedroom and Josh and I are relaxing on the couch in St. Louis!! I am so excited to actually be here in the city to see what the future holds for our James. We had a really easy trip. James was a dream and all your prayers were answered. I dont think he had one muscle spasm while we were driving! God is so good!! And all of you prayers warriors are so special to me, thank you thank you :-)

We are staying in a great hotel! They offer a special rate for Children's hospital patients and we were even given a suite with bedroom and living room. It is SO nice and clean and comfortable. James has enjoyed getting to explore the room and "hide" in the closet. He just sticks his head in the closet and his little butt is still sticking out, but he thinks the world disappears if he cant see us. What a silly boy ;-)

So tomorrow at 9am is the BIG decision time. I am asking for your prayers yet again. But God has really laid on my heart that even though He knows my hearts wants to hear a YES! My wants dont matter. It is God's wants that my heart truly desires. So I am asking for those that are praying for us to pray that God's will be done. I also ask that MY Mommy heart can handle what that will is and rejoice that His will is the best for us. Hearing no will be difficult and I wont pretend that it wont. God has blessed me with the chance to raise James in a way that honors Christ and I will regroup and we will find yet again "normal" So lots of prayer requests tonight.

Now for the fun stuff we are taking James too while we are here. The ZOO! Yeah :-) I haven't been to a Zoo in many years. The St. Louis zoo is supposed to be really great. I have been telling James about it and he wants to see the monkeys and the lions. The weather is supposed to be perfect . We are meeting a cousin of mine and his wife there and it will be fun to introduce James to more of my family and have a afternoon of fun!

Saturday, March 6, 2010

on the road again, I just can't wait....

To get on the road again.... Now that I have stuck that song in your head, I will move on with my post ;-)

As the song says, I truly cant wait to get on the road. I have held my sanity together pretty well this week I think. Today on the other hand I have officially lost it. I am weepy, emotional and just plain a mess right now. I am hoping that I will feel better when we actually start driving. I am hoping I will be able to not embarrass myself at every turn, but no promises.

Today was already a busy day for James and I. March is birthday central around here, and today James and I had 3 birthday parties to get to. Now for those of you that know me, you know that birthday parties are hard for me. I love them but it is like attending a parade of kids that can do more than James. And I try my best to keep focused on James having fun and keep a smile on my face but sometimes that is hard. I want James to have fun with friends and to get invited to parties. I dont want people to not invite him because of his disability. I also want James to feel normal and go to parties like every other kid.

Those are all the things I "want" but sometimes I just become a teary mess when I see all the activities that I would LITERALLY give James my legs so that he could do. But I try to jump in there with him no matter how embarrassed I am that the other parents are just sitting on the side watching us. It is about James and making sure he is included to me so I do it. But today I hit a wall ( I wasnt too far from the wall to begin with). I tried to smile and help James do all the really cute and fun activities because this little girl is the daughter of a really wonderful lady that has always been such a big supporter of us. But when I was told that I couldn't adjust an activity so that James could participate it hit me like a slap in the face. It was all I could do to leave the party without people seeing that I was a blubbering mess. I dont think I succeeded in that :-( In fact I feel pretty sure that I have embarrassed myself really good this time.

It was just one of those times that every emotion caught up with me, and when the lady reminded me that James was so "different" than the other kids I had to either leave or ruin a beautiful little girls party. I hope me early exit didnt cause too much of a scene. Oh my the situations I get myself into!!

Sometimes I HATE Holland! I have never liked wooden shoes and tip toeing through the snowy alps has never been my dream! I like Italy and so badly wanted to raise James in Italy...oh well! *** Emily Perl Kingsley Welcome to Holland If you dont know what I am talking about***

ANYWAY!! I say all that to say I am a mess. A -ready- to- find -out- what- the- future -holds- for- us- mess Thank goodness I dont have to wait my longer!!

Friday, March 5, 2010

just 1

We have made it to just one more day until we leave for St. Louis. I cant believe that we are here. It seems like I have been talking about this Dr., hospital, surgery forever. But I guess it has just been really a year since I even knew it existed. Isn't if funny how just a year can change your perspective on life and what you consider important. 3 years ago I didn't think I would ever get to hold a child on this side of heaven.

In fact, 3 years ago after 300+ injections into my abdomen in just one year and 2 failed IUI's we had been told by our fertility Dr. that my chances of carrying a baby to viability was extremely low. I know that some might see our situation and feel bad for us. Please don't! God brought James into our lives EXACTLY how He intended him to be here. James was not a mistake, and God brought us through, so that we could be the parents He wanted us to be. Josh and I are the lucky ones to have James in our lives. Josh and I are just so happy to be parents of a child on this side of heaven that James could have come to use with 12 arms and we would have been happy!

I am so excited to start this part of our story with James. I am sure every parent dreams of those milestones that children reach. First word, first steps, first..... I feel like we have had to work so hard for our firsts, and although it does make them sweeter when we get to see them, I have to be honest and say that I have had to grieve the loss of some milestones. I have learned to not pretend like they don't matter to me. I used to do that, and it caused a lot of problems down the line. Now I fully admit that when James turned 1 I grieved not getting to see those toddling steps, but I am slowly learning that although my path might not look like other mother's paths, it is still just as wonderful to watch a 2.5 year old take steps in his walker. I hope to one day see independent steps and that is why we are going on this trip to St. Louis.

I do have a very specific prayer request. James is having some pretty painful muscle spasms right now in his legs. He recently has had a growth spurt which means that although his bones have grown his muscles haven't and this is causing some pulling on the bone and muscle spasms. He is such a trooper and goes about his day. I guess he doesn't know any different. But it is obvious that he is uncomfortable and sometimes in pain. This breaks my heart to see. I worry that the long drive will make this worse. So if you could please pray that he can be comfortable in the car for the long ride and that his legs will ease us for him.

I will be updating his fan page and this blog with all our details of the trip. We are supposed to have wifi in the hotel but if not my sister will be doing the updating :-)

Thursday, March 4, 2010

2

Just 2 days until we start this journey officiallly! I am pretty excited, nervous, but excited. I am ready to know what our future holds. Please pray that I can get everything together in time. Yeah if you dont know me in real life I am a bit of a procrastinator. I like to think of it as working better on a deadline :-)

Wednesday, March 3, 2010

thank you

The title of this post is so simple and yet if you were to step inside my heart you would know that those two words do not come close to sharing my feelings. Josh and I have been so blessed in our lives. We have experienced some true heartbreak indeed but God has strengthen us through it. And today I sit here in front of this computer, having written several sentences only to erase them because they just don't convey what I am feeling.

What is gratitude? What does it mean to say thank you? Sure I make James say thank you after I give him a cookie but am I teaching him anything other than the "magic words" we say to get stuff? I hope not I hope that our gratitude in this journey is apparent to everyone. I hope that each of you that read this blog know that I am so thankful that you would take time out of your day to see what is going on in the life of our son. I am not exactly Shakespeare in my writing and I certainly wont be winning any awards for my writing style. I do hope you see this as an honest way for a Mother to deal with her feelings about raising a child with special needs. It isn't always pretty but that is ok to me. Life is sometimes gritty and raw. Sure, we will experience a few hallmark moments here and there, but the day to day of life isn't always glamorous.

I say all that to share with you the people in our lives that have so generously given to us so that we can make this upcoming trip to St. Louis. Even in these tough economic time they have offered up what they can so that Josh and I can provide the chance for our son to walk independently one day. This is just the first leg of our journey and all of your prayers are the most important thing you can give us.


I wanted to say a very special thank you to those of you that have donated for this first trip to St. Louis. Because of you Josh, James and I can make this trip with out the worry and fear of how we are going to make ends meet the rest of the month. We will be able to go on this trip and meet ALL of our needs not only travel expenses but hotel and the co-pays that will need to be paid. I know you didn't make your donation to be recognized but I feel it is important for me to say thank you to each and every one of you.


Thank you! Holy Spirit Catholic School for allowing your students to raise money for James and support a Holy spirit Alum. We look forward to sending you lots of pictures and update in the future. Thank you Sharron and Mike for making this happen!

Jane and Roger H ( aka Mama and Daddy ) You truly are James' biggest fans! And without your support I don't know how I would function. Love you!

Sarah C ( aka Gran) The love you have for James is so beautiful. I feel so blessed to call you my Aunt and I love you!

Christina J- You have been such a wonderful friend. I am blessed to have you in my life.

Martha R- I look forward to spending some time with you and John in St. Louis

Debbie A- My biggest cheerleader! What a friend you are!

And to everyone that has sent a donation, but we may have not met yet. Thank you!!!

Megan D

Michelle T

Johnny D

Brooke B

Elizabeth D

Jeffery Y

Holly H

Amy Y

Rebecca B

Steven B

Jeannie S

Monday, March 1, 2010

6

Only 6 more days until we leave for St. Louis. I am very excited to know what our future will bring. It is strange for me to think that this time next week we will know the date and time for James SDR surgery OR if yet again we will have to learn our new normal. I pray with all I have that we will get a date. I just really feel that James will benefit from the SDR. I just hope I haven't built myself up for a big disappointment.


Either way just 6 days! I do have some very specific prayer requests that I would like to share...


-Safe traveling to and from St. Louis. We are southern bells here and snowy roads worry me

-That James handles the new Dr. and therapist with courage and dry eyes. Please pray that he will show them just what a hard worker he is.


On James' Facebook Fan page you will find a new Auction that we just added under Notes. If you aren't a fan just click on the widget to the right of this blog and it will take you right to it. We are auctioning off these Super Cute Shirt n' Tie Tees that my friend Christina created. The auction will last until Wed at 5pm and 100% of the proceed with go toward our trip in 6 days!!


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