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Friday, January 29, 2010

This weather is in my way!

I guess God knew that James needed a break ( Mommy too for that matter) And we are smack dap in a bit of a winter event , as the new is calling it. That makes me giggle by the way! Anyway, today is typically James water therapy day, but Josh called me on his way to work and told me that the roads were getting to bad for us to get out. I think James has enjoyed staying home. Part of me is happy that we got to stay home but the other part is always disappointed that we missed an appt. Water therapy is such a KEY to James being loose enough for the other physical therapies he does in the week . I know that since we have missed this week in the pool we are going to have a harder week next week :-( I think I am going to fill the bathtub up really full and do some stretches in there to try and get something done.

Just over 30 days until we leave for St Louis and as I have said before I am getting pretty nervous about it. My list of questions seems to be growing each day. Now dont get me wrong I am still very confident that we are following what God wants for our families life. We still pray everyday that our eyes are wide open in the process and that if anything is a red flag we will be open to that. In the meantime I will continue to research and advance my Wal-Mart MD (hehe) We might even get out and enjoy some winter weather this afternoon and built a little snow man!

Thursday, January 28, 2010

Getting Ready

Now that we have a date to actually go to St. Louis I find myself a little nervous. Scratch that a LOT nervous!! I know that this is just the eval appoiontment and where we will make our surgery date but it just feels like how I felt when I was waiting on James to be born. Excited but scared to death as well!!

James of course is going along at happy as can be. We are starting to get used to this new intensive therapy schedule. 7 therapy appointments in one week is harder to get used to than I thought it would be but James and I are working it out. The days and mornings that we dont have therapy he and I try to stay in our PJ's and just rest at home. I think James is starting to think the car is another room in our house as much as we are in it! LOL

I have been doing a lot of pre-op reading about what James needs to be doing (ideally )to get the most out of the surgery. I find that the St Louis Children's website has LOTs of get info. But for those of you that know me know that i can get a little obssesed with research as well. I am doing my best to keep it to a "normal" level but when they are talking about cutting your child's spine open for 5-7 hours it is hard not to. I have gotten lots of encouragement in my reading that James is making great progress toward what he needs to be a independant walker. Of course we know that James will not be leaving St. Louis a walker. It will take time...and lots of it. And even then only God knows what is in store for James. My goals for him is that he will be able to interact and play with his peers. A BIG one is potty training. I want him to be able to sit on the potty because that leads to independance later in life. Right now his little legs and hip are so tight that he cant open them wide enough to sit on the potty. I think if they were looser he could be potty trained.

I thank you for your continued prayers for us. They are SO needed and I hope you will lift up me and Josh as we start to wrap our heads around this surgery.

Tuesday, January 26, 2010

testing


Saturday, January 23, 2010

We have a Date!

Just about 5 minutes after I posted on James' facebook page that I was hoping to hear from St. Louis soon they called! I was a little nervous because in the back on my mind I was afraid that they would have looked at this MRI and other paperwork and told us it was a NO right then and there. BUT they didnt! We have passed yet another stage on this journey.

We have a date for our evaluation date! So now we have to figure out travel arrangements and where we will stay. I called the Ronald McDonal house but since we are a new family we arent allowed to check in on a weekend. That means we will have to find a hotel close. I am thankful for so many of you that have so generously donated to help us with these expenses. Your donations will be helping us take James to this appointment the first week fo March. We couldnt be doing this with our your support.

Wednesday, January 20, 2010

The Road to Walking!

Any parent that has a child with special needs will tell you that it can be the most rewarding experience and yet the most draining as well. They will also tell you that the equipment that is needed can be overwhelming. I know that when my hubby and I were expecting James and we went to BabiesRUs to register we never saw the isle that was labeled Pediatric Adaptive Equipment. We never talked about how our insurance will only allow a new wheelchair every 5 years, adaptive stroller every 5 years and a gait trainer every 3 years, and that we should plan accordingly for growth. I saw myself picking out crib sheets and mobiles. I did lots of research on what type of bottles we would use, but never did I think to research if I wanted a Kaye walker, Kid Walk, or the Pacer?

But here we are.....


And where we are is happy and so we move on and look for the good in our situation. After a very Large yard sale and Bake Sale this Summer that I organized to help us raise money for James' new leg braces, we were pleasantly surprised that we had extra to afford the co-payment for a new walker for James. We had been borrowing one from UCP but it wasn't exactly what James needed because it didn't allow him to actually walk, just stand. So with our insurance and things combined with the extra we made in the yard sale we were able to get a bright and shiny NEW Kid Walk!

This is a piece of equipment that James can be independent in and on level with his peers. It can also be adjusted day to day as his needs change. We got to pick the colors and it was built to his measurements which is nice. Of course we hope and pray that this piece of equipment will not be needed for too much longer after the SDR surgery because it is too much support. But we knew that he needed it now and to build his strength and practice walking so that he will be ready. We will be MORE than happy to donate this to UCP when James does not need it anymore!! That will be a happy day :-)
So here is a little bit about the Kid Walk....


It looks like more equipment that it really is. All of the hardware is behind James. Which is nice because he is able to walk up to tables and people! Below you can see that I can adjust the height and it will grow with James if he needs it for a few years.


This is a profile shot of the equipment right behind his back. This "stuff" allows James to pivot and make a more natural walking motion, instead of a stiff walk like the other walkers. It also makes him stay over his toes and not do the toe walking that you see in some kids with walkers.

This is the seat and trunk support. VERY comfy! I liked how soft everything was and that nothing is rubbing on his skin. He is also very safe and cant fall. Which for right now is a good thing since he doesn't have the ability to catch himself when he does fall.

So that is the Kid-Walk. Just one leg of the journey in helping James walk!!

Friday, January 15, 2010

All Packed up and ready to Mail!


Guess what James' friend Scout is holding? If you said all the paperwork, X-rays, MRI, and PT reports for the SDR surgery then you are RIGHT! I am excited to have everything done are ready to turn in. I sort of feel like a student that just completed an homework assignment and is just waiting for the teacher to ask who did their homework. I am ready to raise my hand and say ME!ME!
I am going to overnight it and of course insure it as well. There is a lot of money and time in that little package and I don't want it getting lost! I hope to hear from the scheduler new week. We plan on making our first trip to St. Louis in Feb!

Tuesday, January 12, 2010

Q&A

I have received a few emails with some questions about James SDR surgery as well as how are are setting up this fund. First let me say that our number one request is for your prayers and if you feel lead to donate to James' therapy cost, SDR surgery or other needs he may have we certainly welcome the help. You will notice that I am pretty much an open book. Josh and I are just a regular couple that wanted to have a family. We were given the BEST gift in the world and that is our James! He is a blessing and we thank God everyday for him.

Here are a few of the questions we have received, and a few that I thought might be coming!

Q. Why are you choosing the SDR and not medication to manage James tightness in his legs?
A. Josh and I have done a lot of research on both options. Yes there are medication options that can ease the tightness in James' legs and for some children with CP I am sure that option works well for their families. The medication, Baclofen or Botox, in my view is like closing the barn door after the horse has gotten out of the barn. You are constantly have to change the dosage and eventually a pump has to be surgically implanted into his spine because he will become resistant to the oral doses. Baclofen is also in the narcotic family of drugs. I have read several long term studies of adults that were given medications as children and how the risk of becoming dependant on the drug is very high. I feel that James came in to the world with what can be seen and a difficulty and I want to be very careful about how I help him into adulthood. So SDR surgery, for us, eliminates the need for the medication and also hopefully the need for future orthopedic surgery in the future because his bone will not be deformed since his muscle will no longer be pulling on the bones.

Q. Why are you choosing to Fly rather than drive to St. Louis?
A. We are planning on driving for all our pre-op appointments. We will choose to fly for the surgery date because on the return trip James will not be able to be in a sitting position for longer than 2 hours. Since we live longer than an 8 hour drive that means we will have to fly to St. Louis when surgery time comes. We will then resume driving to the required post-op appts. Air Fare is quite expensive and we will have to save hard for the one trip!

Q. Did you know that Shriner's Hospital does this surgery and the cost is covered?
A. Yes we do know about Shriner's hospital. We have researched using Shriner's and although I feel that they are a WONDERFUL organization and would be more than happy sending James to their facilities for treatment, we have chosen St. Louis. Here is why.... The SDR surgery has been around since the early 80's. Dr. TS park is considered THE world known Dr. for this surgery because he developed it. Other hospitals do the SDR, and they use a different method. The other methods cause a larger scar, longer hospitalization and more weakness post surgery. Dr. Parks new more refined method is much less invasive and more right for our family.

Q. If i donate, what does that cover and where does it go?
A. This is the hardest question for me because talking money is always difficult. So I am just going to be REALLY honest and blunt on this blog ( like I am in life) We have set up a separate savings account for James that is linked to the PayPal button on the right of this blog. All the money that is, has ,or will be donated goes straight to that fund. It will stay there until we have expenses that involved travel to St. Louis, equipment cost, co-pays, PT, OT and follow up appts. ALL donations are for James and his needs!!

Q. If James doesn't qualify for the surgery what happens to my donation.
A. Well just to be clear this fund is for expenses that relate to James' care. Right now the SDR surgery is our largest future expense because it involves so much more than just the one surgery. If by chance we are told that James will not qualify for the surgery ( although we have been told that will not be the case) then donations will be still be used for his care. Right now James is in therapy 3 days out of the week. Our insurance only covers 30 OT, PT and Speech visits combined in one year. We will use that up in the first 6 weeks of this year alone!!
I say that just as reality for us, and not to have a pity party. This is just life and we will continue to provide what James needs not matter what.


PLEASE Feel free to ask any question that you feel lead to ask. I know that everyone will understand that this is the Internet and although I am an open book about our life, I have to be careful to do what I can to protect my family. I will not be sharing personal financial statements, or will I provide any amounts others have felt lead to donate to us. We will share the names so that we can publicly Thank You, unless the person that donates asked to be un-named. I am just so honored that so many people have stepped up to offer prayers for our son.

We serve a Risen and wonderful God that can, if he chooses, heal our son at any moment. I pray for this to happen everyday on this side of heaven. Until that day I will work to the best of my ability to give James the best quality of life that we can. God has trusted us with this child and I pray that I will be the mother that Christ has called me to be. I don't promise to be perfect but I do promise to be honest and take you along with us on the journey.

Thursday, January 7, 2010

Thank you for Visiting

So many have asked what they can do to help our family, that we decided to set up a fund where you can donate to help up save for James SDR surgery. If you would like to donate, just click on the Donate Buttom located on the right side of the Blog. That will take you to a PayPal page where you can enter in the amount you wish to donate.

To learn more about the SDR surgery please click here http://www.stlouischildrens.org/content/medservices/AboutSelectiveDorsalRhizotomy.htm
This is a BIG commitment not only financially but also the commitment of PT everyday for 6 months post op. We do have wonderful insurance but it only covers so much. We have a limited amount of PT sessions and the travel back and forth to St. Louis.

We appreciate your willingness to help our family. For those of you that can not help financially there is something you can do that is equally important.... PRAY! We ask for prayers for His wisdom in all these desicions that we make as well as for comfort during the times of surgery and physical therapy.
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