Tuesday, June 29, 2010

I want to .....

Whine!! But I am going to refrain. .....for the most part ;-) And this rant is not directed and anyone person or therapist but instead my feelings and frustrations on the whole!! I WANT to whine, kick, scream, yell, cry but most of all I want to sleep. Lets just be honest here, today really stunk! I am going to give this first paragraph to the whiny side of me and then move on. James was grumpy and very uncooperative in this therapy session today. I am frustrated that we don't have clear goals and certainly we don't have a clear plan to meet goals. I am frustrated that I am made to feel like a hovering or overprotective mother when I make therapy suggestion. I realize that our wonderful PT ( and I really to mean that!) are highly educated and I have every faith in their abilities but I am no dummy either. I spend at least an hour of research on James's condition everyday and feel that what I bring to the table is valid. I AM his mother and DO deal with this everyday on a REAL basis. I am a former teacher. I like clear and obtainable goals.

Ok rant and whine session over!! I feel better to get that out and now I can talk about the good that happened today.

Last night my sister can to help me with painting James' big boy room. I am thrilled with how it turned out. Wanna see? OK!

It also has a pterodactyl painted on the other wall but my camera memory card was full and I didnt have the energy to empty it. My sister talked me into these super bright colors, and I am so happy she did. I love them!! They are so bright and fun and JAMES!! You see him in the bottom left corner sitting in his "Thinking Chair" my friend brought for him. He is in love with this chair and we just carry it around the house for him to sit in :-) He wakes up asking to sit in this chair.

As for Post Surgery progress, we do have some good things to report. Today during OT James was happier. He loved playing on the scooter board. He pushed off walls and got pulled by Jordan. He had a GRAND time with that. And me and his OT were happy to see that he could hold a grip for such a long time.

Speaking of Jordan!!! Oh how I love this kid. She isn't a kid anymore, but instead a 18 year old young woman. I have known her since she was 4 months old when I babysat her and her brother. She was my little sidekick then and happy to say she still is. She comes Tuesday and Thursdays to be my extra hands during therapy. I look forward to her coming too!! It is nice to be able to talk with the therapist while she has James. I have her until the end of July and I think I might cry when she has to go to college!!

Well I have finished off a bag of banana chips while typing this post as I hide in my bedroom. James is happily watching a cartoon and I decided to take 5 mins of Mommy time to vent and put on my happy face!!

Saturday, June 26, 2010

Update on Progress

I will get back to the picture post in a bit but I wanted to document what is going on in our lives right now. I feel like things are going by so fast that it is hard to find the time to sit and type it all out. But I use my blogs as a place to document our lives, almost like a baby book for James. So I wanted to get some of his progress down. James is just amazing me everyday. I know people wonder why I walk around with me chin on the ground, but it is because I am in awe of this little boy.

I mean this picture that you see above might to you just look like a kid sitting watching TV. And on the surface it is BUT to me it is 2.5 years of tears, PT,OT , and LOTS of tests. To me this sit is a victory. It means that my son will be able to join his peers in circle time at school. It means the first step to independence

I have said it before, and I will say it again, I am a self professed Momma Bear. I will be the strongest advocate for my son that I can. I am not always popular with therapists and some frankly just dont like me. I have learned to agree to disagree with some and other we have moved on to greener pastures. But when I see sights like this I know that all those meetings are worth it. I guess some would say that the teacher that gets my son is in for but I dont think so. I hope I am the type of parents that I always wanted in my classroom. One that loves their child and wants them to succeed in life. A Parent that will help the teacher give their child the tools to make that success a possibility. BUT I do expect all that work with my son to be striving for success and if I have to make sure we stay on track so be it ;-)

Several people have asked me where we receive physical therapy. That is a complicated answer, but here is the short answer. We receive PT and OT with United Cerebral Palsy and Huntsville Hospital Pediatrics. All of our therapist are so wonderful with both agencies. We go to different agencies because each place has their own philosophy. And each has a different style. I like for James to get the best of both worlds. There are things that I love and things I dont like with each agency so in my opinion when we go to both we get a more well rounded therapy program.

James has started his 5 day a week program.

-On Mondays we have a therapist come out to the house and that is great because it is one day of the week I get to stay in my pj's just a bit longer ;-) James too!

-Tuesday and Wednesday James receives Physical therapy at 10 and right after he gets Occupational Therapy.

-Thursday James gets PT and then Speech therapy right after

-Friday Is WATER day. He and I both look forward to this. It is physical therapy in the heated water pool. Aghhhh!

All of these therapies are in the morning. After James' nap, I do his home stretching program that we were given from St. Louis and then before bed he does his treadmill therapy. If is sounds like a lot, that is because it IS. By Friday I am lucky to be able to say my name and little James is pretty tired too. So Saturday and Sunday are rest days!! I do some stretching but try to make it VERY fun for him so he doesnt even think he is working.

So far James's speech has improved leaps and bounds. His speech therapist said that she is amazed and feels that James is making more age appropriate sentences. He is clearer and I have noticed stringing more words together post op. In PT we are struggling with James putting weight onto his feet. We think that he is still having nerves pain in his feet but that is normal and is supposed to get less and less each week. That has seemed to be the case so far. Everyday James shows more strength and that he is more willing to apply pressure to stand.

James is also able to reach his hands above his head now. If you are on facebook you saw this cell phone pic I took..

Again it is another milestone! Pre-op his arms would stop about shoulder length but now he can get those cute little arms way up to the sky! On the walking front....we knew that the SDR was the starting point for James' journey. And that is so true. James is young and so his willingness for therapy can make things difficult right now when he doesnt know what is going on with his body. But he is such a hard worker that he tries everyday. I think that alot is fear. He doesnt believe that he can hold himself up and doesn't understand how to move these new muscles but I know he will get there in time.

We are 2 weeks and 2 days post op and I am SO impressed but how many improvements James has made so far. I cant wait to see what the next week holds for us.

Monday, June 21, 2010

St. Louis in Pictures Part 2

St. Louis in Pictures Part 2

James looking like a sweet angel sleeping the night before surgery. And the rest of pictures of the day of surgery Pre-op

Getting to pick out his smell....he picked Bubble Gum!

All the toys to keep him contained for the 1hr wait

I was a mess but trying to put a smile on my face

SO Silly!!!

And Now we wait........

St. Louis Part 1- In Pictures!

PART 1 of our SDR Journey in Pictures
Our first real day in St. Louis we went to the Science Museum and had a great time with my cousins Martha and John. James loved being able to touch everything. Here are some pictures from that day. I am planning on doing series of pictures only posts with all our pictures from the trip and surgery that I didn't put on facebook. ENJOY!

I thought this was so neat. It is a REAL Mummy of a 7/8 month old child. It was so heartbreaking for me to think of the grief this mother felt even 2000 years ago.

James the Center of the universe!!! Or at least I think he is ;-)

Friday, June 18, 2010


I just had to pop on here and make a note to document our first BIG milestone! During our morning stretches James was able to lay on his belly and kick up his heel one at a time to his booty! We are so excited because this was something that we could have NEVER tried to get him to do. So cool to see these milestones everyday!!

Thursday, June 17, 2010

First Home PT session

Today began the first of many physical therapy sessions we will take James too. I was excited for his therapist to see James for the first time after his spinal surgery. It was sort of strange to be taking my child to a physical therapy session just 7 days from having a major spinal surgery. Wow, God is good!

We are officially 1 week from surgery and James has made some great progress. He can now roll from his back to his belly. He can get onto his hands and knees and even make a few crawling movements. He gets pretty tired quickly but after resting for a min he is back and working on building those muscles right back!

We are still finding muscles that he can now move that he was never able to move before. Like pre-SDR when he would lay on his tummy he could lift his legs (straight) about half an inch of the ground. NOW he can lay on his tummy and kick his bottom or lift his legs straight several inches off the ground just like normal! It is amazing. I also noticed that when I change his diaper he is much more comfortable. I think I could sit here and list all the cool things he can do but the list would just keep growing!!

The PT today was very impressed with his new body. She is excited to get him on his program . I was surprised at how nervous I was for other people to touch and move him. I am trying to work through this but I am so afraid of someone hurting his back that I find myself hovering! UH OH.. am I becoming a helicopter mom??? I think my dad and husband might say yes LOL!

James has been very clingy to me. I know this will pass so I am enjoying every snuggle I can get! When that sweet little face looks and me and says "Mommy hold you" Well I melt and stop whatever I am doing and hold that baby!

I am so grateful for all of your emails, notes, dinners, and facebook comments letting us know you are praying for us. They have meant SO very much to me. God has been so good to us and has shown us so many wonderful miracles that I look forward to what He has in store for us. I can't wait to repay this love and encouragement that God has lead so many of you to offer!

I hope you are looking forward to following James' progress! I am going to try my best to post everyday and really make this a journal of this incredible journey!

Wednesday, June 16, 2010

Day 2 or PT and coming home

James is still having difficulty with being put in the sitting position, but it is getting better. We think he is having some nerve pain in his feet that we were told might happen. His little nervous system is trying to workout what has happened to it and it should calm down in the coming weeks. We had an amazing therapist that was so energetic and James really liked. Well all of the therapist were amazing but Micheal was something extra!

We worked on sit to stand activities and some walking as well. I was amazed that just 4 days post op James was holding his own weight on his feet. The scissoring ans cris crossing that he was doing pre-op was gone! I know I went through these sessions with my mouth wide open in amazement at what I was witnessing. I had read about what to expect and I had seen other videos but when you see your child move muscles that he has never been able to use in his 2.5 years here on this earth. It is very surreal to be apart of this journey.
Dr. Park came down to the therapy gym to see James . He was very happy at his progress, and he said that everything James was experiencing nerve pain wise was very typical and will go away.
And now the Trip Home! Post-op Day 5 and it is time to go home. James slept really well. We went to our finally PT session. This session was a lot of making sure we understood the stretches and if we had any questions. The therapist did a few things with James. He crawled and practiced his walking and did a little sitting. Then we went over a lot of the precautions about how to hold and carry him. These precautions are a little intimidating let me tell you!
After our PT session we packed up, got his prescriptions and off we went. The first hour of our journey was rough. James' meds had not kicked in and he was really uncomfortable in his car seat. I just started praying that he would be ok. It is so stressful when you know your child is in pain and there is nothing you can do about it. But after a very loud , stressful first hour James calmed down and was able to relax. He feel asleep after a little while. So did I! I fell asleep in Il and woke up 77 miles outside of TN!!! Josh had been flying!! He said that all he wanted to do was get his family HOME. We made the 8 hour trip in 6.5 hours. We only stopped once to use the restroom and grab a bite to eat.
I love the sites of MO, IL and KY but boy, oh boy did it feel good to cross that Alabama state line. We pulled into our driveway at 6:27pm and were greeted by our sweet Lab sushi and even the chickens seemed happy to see us :-)
My sister was here and she has cleaned our house and set up James' big boy bed. So here we are, starting the recovery journey. So far it is going well. James is having muscle spasms and having a hard time stay comfortable. He wants to play but just doesn't have the energy. I know ut is going to take some time to get back in the swing of things but we will get there. Tomorrow is our first day of home PT and I am looking forward to our pt seeing how many changes in James' boy there are!

Sunday, June 13, 2010

First Day of Physical Therapy

Whew...........I could leave it there and trust me that would about sum it up, but I know you want some details so here they are.

James had a weird night. He couldnt settle in to sleep until about 12 and then the nurses came in to flush his IV at 2, of course that woke him right up. I crawled into bed with him hoping that would settle him down to get to sleep and it did until about 4am when the nurse came back in. He...and I, were awake at 4am and stayed that way. At 5:30 I gave in and just decided that we were just up for the day. So I got up turned the lights on and went on with the morning. He woke up in a good mood and was ready to color and watch his dvd's

At 9am the physical therapist came in to show me how to sit James up, pick him up, and transfer him to his wheelchair. This first try was just heartbreaking. James screamed with pain and fear of being sat up in bed. And then when he was moved to his wheelchair it got worse. To the point he turned blue and the PT decided that he needed to be moved back. All about a span of 4 mins!!

By the time we transferred him back to the bed, he was zonked how, breathing, but just wiped. He feel asleep and took a nap until 12:00. We gave him lunch and then it was time to start the transitioning for the afternoon PT that was downstairs in the PT gym.

He screamed when I got him up and in his chair but away we went. James crying the whole way. We arrived at the pt gym and our PT Robyn was waiting for us. She was very nice and explained that more than likely James would cry through the whole session. GREAT!!!! :-( The gym was the nicest pediatric therapy gym I had ever seen. They have every possible therapy tool you could ever want. How I wish we were close so that James could receive PT here for a bit longer!

The session started and James screamed. She showed me some of the stretches that I am to do everyday. I tried to distract James with some of the new toys they had and he started to calm down. He LOVES drums and they had a few the peeked his interest. So he was already showing her just what a trooper he was. And he didnt stop there.

Now all the things that I am about to tell you are things that James could do Pre-Op BUT he was doing them either incorrectly with the coping skills he developed or he was using the wrong muscles/tone to do them. Now that he woke up with a brand new body, James has to relearn how to do everything again.

She showed James how to roll onto his belly. When he was on his belly we worked on how to get into a hands and knees position. He really worked but finally was able to do it and stayed there for about a min! He would get into a position and then have to lay back down to rest. His goal before we leave is to bench sit for 5 min, and he did 2 min! The pt was very impressed! He showed her lots of strength that she said was great to see. The PT told us that she thought James looked excellent and was really on track ! Good to hear :-)

After Pt we took James to the playroom and he got to look around and get a sticker. We came back and let him rest for a bit. Later we tried to transfer him again and he did ok. He cried again but I know that it will get better each time we do it. The hardest part for me is making sure I am positioning him correctly. I am so used to just grabbing him up and everything . Now I really have to go slow with him so that I keep his back as straight as possible.

We have MANY restrictions on how we can and can not move James. So many that it makes you want to just let him be still. I know I cant do that but the thought of hurting his spine is scary! I did learn in PT today that a lot of his crying is fear on James' part. He knows that some movements are painful and cries before you even make the movement. I am sure it has to be frustrating to not understand why all of the sudden you can move your body like you are used to. I just hope I can help him work through these frustrations easily and smoothly.

We will have PT again tomorrow twice and then after the morning pt on Tuesday it is time for home! PLEASE pray that James will handle the car seat ride well. I am worried about this but there is nothing i can do about it and many people make this trip and are just fine. I know we will be too :-)

Saturday, June 12, 2010

Last night

This is going to be short and to the point cause I am tired.

James had a good night last night. There were a few vomiting spells but we hope that once the phentanol ( morphine) is stopped at noon he will feel better. Already since the have cut it way back he can eat some solids and is starting to interact with us a little more. A few min ago he asked me to give him more kisses.....Music to MY ears!!

The plan for today is come off all IV meds and switch to oral meds only. Which means he can put his own pj's on. He will also get to sit up in the bed today for a bit. He has been asking to get up so I know this will make him happy. Other than that we will be watching LOTS of Blues clues and getting this baby back to himself.Thank you for your prayers. Keep them coming

Friday, June 11, 2010

PICU day 2

Here is me and James just before he was taken back for surgery.

James is doing really well. Last night we had only a few moments of crying. James is a fighter though. When he is hurting you better watch out because those little hands and arms start swinging. His pains meds seem to give him a good 2 hours of solid rest and after that he starts to itch and get irritable. We are working on the right doses to give him longer pain control.

I cant say enough about the nurses here in the PICU, and I am sure we will get just as good of care when they move James to the Neuro-Surgical floor this afternoon. Last night I looked at James and I couldn't imagine him being ready to be moved to the neuro floor, but this morning I really do see good improvement and think he will be ready. So since he is doing well and the scary stuff is hopefully all behind us. I am going to talk about the exciting things now! Like what we can already see in improvements.

James has to be flat on his back until Sunday so I am sure we will see even more exciting things as the days progress. But even with his limited movement we can see changes. He can relax his legs open for one! Right now he is laying with one leg bent and the other straight. This is a position that I have NEVER seen before!! Last night the nurses came in to check him and they lifted up his covers and asked him to wiggle his toes. I found myself wanting to tell him that he can do that....... But guess what?? James wiggled those little piggies like a champ.

I think my husband Josh said it best. " When you have a "special needs" child you think you are going to miss so many of those magical milestones, but really God just give you an extra chance to be witness to even more important milestones. In his 2.5 years of life James has never been able to wiggle his toes but we witnessed it for the first time last night!"

Those little moments are so important because they let us know that we made the right decision for James. James can also raise his arms above his head and sleep. We have never seen this before. I watched him try to get up and he lifted both knees up and his head. I think I had to pick my jaw up from the floor. I am amazed by James everyday. He is such a trooper and a fighter. He might come out from anesthesia swinging but he has such a fighting spirit and I am so proud to be called his Mommy!

Thursday, June 10, 2010

Surgery Day

I hope that most of you have been either following me on Twitter @meandj or on James' facebook fan page so you have gotten the hour by hour report. I wanted to give some of the details of the day here.

We arrived at the Surgery floor at 5:45 this morning. When we walked into the hospital a wave a nausea hit me and I almost lost in at the doors, but I held it together. James was in a pretty good mood even though he wanted a snack. we got all checked in and settled in our waiting room. We had a private waiting room which was really nice!! At 6:00 we were called back to the prep room and signed every paper the hospital has I think. Lots of different doctors and nurses came in and asked pretty much the same questions about James' history.

7:30 rolls around and it is time for Surgery. They gave James some meds to help him relax and make the separation not traumatic. I was very happy about this because I was a mess and I didnt want to scare him. By the time we got to the OR door James was in LaLa Land! He didnt care who had him or where they were taking him. He was waving and telling everyone hi. I broke down and thought I was going to faint. Passing James over to the nurse was like ripping my heart out with my bare hands. All I could think about was, "What if that is the last kiss I give him"

Josh had to pretty much walk me back to the waiting room. I lost all sense of where I was or direction. All I was focused on was staying upright, and that was a challenge. We got to the waiting room and I had a good cry. It was great that my mom and dad were with us, Josh and I really needed our support system right then. They went down and got us breakfast. I help off on eating for a bit.

At 8:30 we got the call the the first incision was made. WOW! that is a heavy call to get. The staff called us on the hour which was GREAT! We felt like we really knew what was going on the whole time. The surgery took 3 hours from the time the put him to sleep until they closed. Dr. Park came in to talk with us and explained a little about the surgery.

He told us that James did really well. Dr. Park said that he cut 65% of the nerves that he tested which is normal. We were able to go back to recovery after about an hour. James, like usual, came out of surgery swinging! I get back there and he is puffy and crying. He look pretty pitiful but it was his sweet breathing face so I was happy. He calmed down when we started talking to him. They took us straight to the PICU.

In the PICU James started to have a little trouble with his breathing. At first they weren't too concerned and just did the blow by air ( mask sitting beside him). But after about an hour he started to have saturation levels around 89. The nurse came in and we talked about a nasal cannula. I thought it was a good idea and so we started that. He did care for that too much. But within about 30min it was it was clear he needed it. He started to dip into the 70's and sat around 72 with a respiration of 9. That is when the team came in and started getting him to perk up. He would come up and them get in a deep sleep and dip right back down. He did this several time. I was a little worried but not that surprised.

In the NICU this was James' issue as well. He would drop his o2 levels and not keep him temp. So when they told me that his temp was low too I just chuckled a bit because we have sure been here before! Luckily this time it is pain med induced and we will be working our way out of it.

At around 1 or so, James started to itch really badly. He also started to have muscle spasms. I think these were the worst of this whole process. Seeing your child jerk and grimace in total pain is heartbreaking. At one point he started asking me to help! Oh how I wanted to take the pain from him. His nurses, who are beyond wonderful, talked with the doctor and upped his meds. He also started benadryl for the itching.

As I sit here at 11pm, the rest of the family has gone back to the hotel. I have made a nice little nest here in the corner of James' room. I have lots of magazine and of course my laptop! I am set :-) This hospital is SO wonderful to the families. They brought me a nice gift bag with goodies. James needs me here because he has woken up twice while I was typing this calling for me. We are still dealing with the spasms but they are better. Tomorrow we hope will be his upswing!

Specific Prayer Requests-

1. There is a family beside us that needs your prayers right now! They are is such great needs of prayers for a daughter that was in some sort of accident from what I can gather. The PICU is an overwhelming place and there are great needs for each family here tonight.

2. That James' pain will be well managed and that we can keep him still like has to be until Sunday.

3. That we all can get some rest in this hospital setting.

Wednesday, June 9, 2010


You know that song....

"The sun will come out tomorrow, tomorrow. Bet your bottom dollar that tomorrow there will be sun.......... Tomorrow, tomorrow, I love ya tomorrow........"

It has bee running through my head all day today. Because even though tomorrow is a VERY scary day in our families life, it is also full of such hope and sun! I don't know what my emotional state will be in the morning but right now I am holding together ok. I have moments where I look at his sweet face and I fall apart. Those aren't very often though. I am just ready to get tomorrow over with so we can focus on the sun.

We have to be at registration for surgery at 5:45 in the morning. That is very early but the good part about that is that we are the first and only rhisotomy tomorrow. Today's pt eval went great. the PT's loved James' southern accent, and he charmed even them into helping him up the stairs :-) Nothing like a good ole' southern gentleman to brighten up a day I always say!

We have enjoyed our stay in the gateway city. We have had a little ran but nothing that a nice afternoon nap didnt cure. The first night was rough. James' body clock was out of sorts and he got up and 12:30 and he and I wrestled until about 4. He has since gotten himself together and is back to a pattern.

Yesterday we went to the Science museum since it was raining. We had a great time. I think James touched every touch screen he could find. I took a few videos with my cell that I hope you can see. James was tired but had a great time!

Here is a just for fun cell pic. Right before we left

I do have to say though, trying to "vacation" with spinal surgery looming just a few days away is difficult! I have tried my best to put on a happy face and go with the flow. I haven't done so well on some occasions. I have been a little short with my hubby and family that are here. I am trying not to be though!

I thank all of you SO much for you continued prayers. Some specific prayer requests...

-Dr. Park- That he will be well rested and on top of his game tomorrow in surgery

-All the nurses and techs that will be working with James

-That James' IV and blood draws will not be difficult and that his veins will hold the IVs well

-That Josh and I will be able to stay calm and prayerful during the 3 hours James will be surgery

-PLEASE pray that James will be protected from any infection and other complications that could come from the surgery!

Monday, June 7, 2010

We are here!

Helloooooo St. Louis!! We arrived this afternoon about 5:30pm. It was a smooth trip . We had a bit of a delay with construction but it wasnt too bad. James did really well. Infact he spent the entire trip glued to his DVD player see....

This boy LOVES his Blues Clues and loves it even more when we put the DVD player in the car so he can watch him non-stop. He is snuggled up with his Mickey that his Uncle Matthew and Aunt Jenda brought him back from Disney. He sleeps with it every night and I have to give Mickey about 20 kisses before I can leave the room!

Tomorrow we are going to do some site seeing and enjoy St. Louis . We are planning going back to the zoo and seeing all the sites that we didn't get to see last time. It will be good to get our mind off the upcoming surgery.

I will be updating each day as the Internet connection holds up. I am hoping to get some new pictures of James at the zoo so be watching for those :-)

Saturday, June 5, 2010

We are Blessed

Well the waiting is over! The time has come and a years worth of waiting is at an end. I have been researching this surgery and asking everyone that I could about it for a year. We have seen countless doctors, neurologist, physical therapist, and I can count the procedure my poor baby has been through. All leading up to this moment we are embarking on.

On the outside I think I am holding up pretty well. Or at least I hope I am. I found myself today just sitting with James on the floor smelling his hair, and telling myself "don't forget this smell" I think that when you know how fragile life can be and that we are not promised tomorrow you appreciate those little things. I made sure that when I was holding him today , I really soaked in the feel of his skin and the weight of his body in my arms. Tonight when we were saying goodnight I stayed a little longer at his crib kissing his Bears and Mickey Mouse toys. I even kept him up a little longer that usual just because I didn't want to end the day.

This is the last Saturday that he will be in his body the way it is now. What does that mean? What are we signing up for? All the what ifs are piling up and I am constantly reminding myself to turn my fear over to God. I know the He can handle it because I obviously can not! My mind just wont stay away from the what ifs, and they are scary.

God has shown us just how kindhearted and generous people can be. Even those that we would have never thought to give have given in a way that has blesses up beyond measure. We cant thank then enough, and honestly I dont even know if I could find the right words to try. All I can do is say Thank you! I hope that your investment in a little boys vertical life is one that you will reap the benifits from for many many years. I also hope that I can return the favor to you in a way that will bless you as it has my family.

Friday, June 4, 2010

On time God....

Well it is amazing what God can do in 24 hours. I am in awe of my God and his ability to provide and calm my heart. Yesterday we learned of a change in our healthy insurance plan that was effective June 1st that would add 1,200 to James surgery cost. We were devastated.

I spent last night in a pretty deep depression because I didn't know what we were going to do about this new co-pay situation. St. Louis requires that everything our insurance doesn't cover to be paid upfront. We were prepared for our typical one time co-pay of $300 and had budgeted out all the Carnival and other donations where our travel, hotel and copay were taken care of. But this new 1,200 copay would eat our entire budget and we were not going to be able to afford our hotel bill. At about 3am this morning, I reached a breaking point and God and I had a chat.....well He chatted and I tried to listen to the words of comfort I found in the scriptures. it was a rough night for me but I did find peace and knew that the plan we had was still in place and God would provide the rest.

And boy did He!!!! This morning, I had SO many things to get done on my to do list. James had to have new hip x-rays and that is close to the bank so I told Josh I wold handle making the deposits. I photographed a few t-ball teams last week and I woke up to their orders in my email box and payments in my PayPal box. I also was surprised by some incredibly generous friends and family that had made some donations for James surgery . I got to adding them up and guess what our take home added up to???

Yep you guessed it 1,200. The exact amount that we need to cover the new co-pay expense. Now I have never been one to believe in chance and I am sure there are those out there that would explain this away. In MY heart I know it was God teaching me to give my worries to Him in the beginning. Because He always provides what we need exactly when we need it.

Those of you that know me know that I am a worry wart and this is a struggle I have in my walk with Christ but I never cease to be amazed that God doesn't give up and me and continues to show me just how silly it is to worry. I am His child and he loves me and James more than I can imagine. It sure is wonderful to have a Savior that is still in the miracle business!!

** Update** This evening we have received from some wonderful people donations that have not only allowed us to cover the cost of the new copay but we will be able to cover the rest of our physical therapy bill for James. Isn't god amazing!!**

Thursday, June 3, 2010


Today has been one of those days that you wish you could just go back to bed and try again. It started out well...even though it started a few hours earlier than usual. I had planned to use the babysitter that was coming for a few hours to entertain James while I packed and cleaned the house. That didnt work out because my contact ripped and it was my last pair. Since my perscription was old I had to have a whole new exam. I called everywhere until I finally got an appointment in the babysitter time frame.

At the eye appointment, I was informed that I had an ulcer on my cornea and also an infection on my eye lids!!!! OK?! I ask does this mean that you will not be giving me my contacts today. They of course said yes AND that they would also not be giving me any contact to replace the one I had thrown away for the exam. So I was blind as an infected bat!!

And of course we do not have vision on our insurance so that was all out of pocket AND I had to get new glasses because I will not be able to wear contact for at least a week. I had to purchase VERY expensive eye antibiotic drops. UGH! I figure this was as bad as it could get right? nope there is more.

Josh calls me and says I hope you are sitting. I inform him of my eye condition and that I couldnt see my own nose so of course I was sitting. He tells me that his work has made some "tweaks" to our insurance plan. I think I might vomit at this point. It would be only our luck that 4 days before a major hospital stay our insurance would change. And boy did is change!!

We learned that instead of a $300 in-patient co-pay for the surgery our insurance now requires a $250 A DAY I really do need to vomit! We have to pay a &250 copay now until the 6th day of the hospital stay and of course James will only be in-patient for 5 days. After having a good ole cry in my car, I re-group try to figure out what we are going to do with the extra 1,250 co-pay that we have to pay upfront. I dont have an answer for that one just yet, but we are praying that something will happen. We were told no payment plans but I am hoping I can get something worked out since this change happened SO close to the surgery date.

Please pray that we can get this worked out. I am trusting that God has a plan for all these stumbling blocks right now and I am sure I am supposed to be learning something, but my heart is having a hard time dealing with it.

As I was reading the info packet I recieved today from St. Louis, I had an official panic attack of the surgery. I learned that I will have to leave James alone from 8-10am everymorning and then 7-8pm every night. I am freaking out over this. I remember having to do this when he was in the NICU but he was SO little and just slept. And frankly didnt really know if were were there or not, but now at 2.5 I cant leave the living room without him calling for me. Even typing this out I have had to stop a few times just to remind myself to breath. I am scared that he will be scared and no one will be able to comfort him for the 2 hours I cant be with him. Oh goodness I need prayers with this one!

Sorry this post was a heavy one but it is reality right now.