A New Type of Seizures?

It seems Noah may be having more seizures......

They started about two weeks ago and are a different type of seizure from what he usually has (he usually has myclonic seizures). The newer episodes are like those of a temporal seizure - he stares off into space. When his name is called he doesn't move. If a hand is run in front of his face, he doesn't blink.

We took him to the neurologist just a few days after they started. The neurologist confirmed that they may indeed be temporal seizures and ordered an EEG. The EEG is scheduled for the end of January. 

Since previous EEGs they have found that sedating children alters the brain waves, so Noah will not be sedated when he has the EEG. This is going to be an adventure, folks. I'm skeptical that he will even go to sleep at all during the EEG but trying to not be a negative Nelly about the whole thing so I'd appreciate prayers and positive thoughts.

I'll keep y'all posted! 

Noah's PCA

One thing I am very grateful during this time of Thanksgiving is Noah's PCA (Personal Care Aide). If you follow me on Facebook, you may remember my frustrations with PCA's. We had aides who wouldn't show (and didn't call), aides that would come very late, aides that used offensive language  aides that were lazy and didn't do what they were supposed to, and much more! I was beyond frustrated and had almost gotten to the point where I was ready to just not have an aide anymore because it had just become more hassle than it was worth.

Ultimately, I decided to switch to a different provider. When I chose our first provider, I had no clue what I was doing. I looked online for advice but didn't find anything helpful. I blindly chose my top 5 choices as instructed by Noah's service coordinator from a list of about 100 providers. When I decided to change to a different provider, I knew I would go about it differently this time. I had learned a lot and made up a list of 10 questions. I narrowed down the list of 100 providers to only those in my city and then I called all of those providers and asked my questions. There was one provider that I really liked after my phone interview with them. They were top choice and I prayed they'd have an opening for Noah. And they did!

Working with this provider has been as different as night and day compared to the first provider. In June, they called and said they had an aide they thought would be perfect for Noah named A. They told me a little bit about A including her age, which was 18. I was hesitant at first because that age is so close to Noah's but a friend who used to work with special needs young adults encouraged me to give it a try and so I did.

I am SO glad I did! A is absolutely wonderful with Noah. She's kind, loving, and patient yet firm and stern when he needs that. She goes to school for nursing during the day so our evening hours are perfect for her. The best part? Noah ADORES her! He thinks she is his girlfriend!

One thing this provider does is they do not let their aides work every weekend. So we have a second aide (who's name also starts with an A) who comes every other Saturday and then is our "fill in" aide should should A need to miss a day for some reason.

It's so nice to finally have PCAs in our home who seem to love what they do.

Mr. Kangaroo

I have been really sick the past few days - like stomach flu sick that required a minor care ER trip. So sick I have been staying in bed sipping on ginger ale since Monday. When Noah left for school on Monday, he knew I was feeling bad and would be going to the doctor. On Monday afternoon when he got home from school, he had a tiny kangaroo in his back pack (from the school store) and J asked him who it was for and he said Momma. So, they brought the little plastic kangaroo, who in my state of sickness I un-originally named Mr. Kangaroo into my room and promptly set him on my bedside table right next to the tissues and there Mr. Kangaroo has sat and watched over me the past few days while Noahie has been at school. He is such a sweet boy.

2 Year Surgery Anniversary

Two years ago today Noah had his Scoliosis Surgery. Before surgery Noah's curve was 96.3 degrees and post surgery it is only 11.9 degrees! Definitely a success! It was a rocky road, stressful and very scary at times and recovery for Noah was long and hard but it absolutely the right decision. We've seen many positive changes in Noah since the surgery and I like to think some of those are a direct result of the surgery.

The only real negative is that he lost the ability to crawl, which was how he'd get around the house when he didn't feel like using his wheelchair. But he has made up for that by learning to do this adorable little hop/scoot around the house. 

I leave you with a look back prior to the surgery, one year post, and nearly two years post.......

Noah's New AFOs

Back before Christmas, Noah was fitted for new AFOs. (AFO stands for ankle foot orthosis and is basically a brace that goes on over the socks and supports the ankle and foot.) Children can get decorative AFOs that have a pattern (clouds with butterflies, camouflage, etc) on them or you can get AFOs with "tattoos" that have an image on the back of the AFO. 

Noah got to choose the design for his AFOs and of course his eyes went straight to the Clemson designs. He couldn't choose between the orange tiger paw or the tiger so he ended up with this........

One of each! 

Linked to 5 Minutes for Special Needs

 and

5 Minutes for Moms

Noah's Neuro Appointment

We had an appointment with Noah's neurologist today to discuss the events of the scariest night ever (when Noah had the grand mal seizsure and went to the hospital in an ambulance, read this for a total recap) and the subsequent myoclonic seizures he has been having the past few days.

Noah's levels were a little bit off so we made adjustments to his medication. The Dr. is hopeful that will get Noah back to where he was before all of this started. If the seizures continue after a little bit on the new doses, then we will do an EEG and see if we can figure out what is going on.

After having one grand mal seizure, the chances of him having another are higher so we now have a syringe that we can use in case Noah has a grand mal seizure lasting longer than 3 minutes. We also have a "wafer" pill that dissolves on Noah's tongue and is fast acting that is for us to give him when he is having myoclonic seizures. While I am glad that we have these things in the case of an emergency, it's scary to know that we need them.

I'll end with a cute story..... As you may know, Noah is mostly non verbal. He says things like Momma, Daddy, Nana, and Granddaddy but that's about the extent of it. He often tries to talk but what comes out is unrecognizable. A couple of times lately, Noah has blurted out things that are real, recognizable words! Today, when the lab technician was getting blood to check his levels, she was having trouble finding a vein. It was taking awhile. Finally she announced that she had found one.  Noah looks at her and says "It's about time!" There was another lab tech assisting and he looks at me and says "Did he just tell her it's about time?" I responded that yep, I think he did just say that! We all busted out laughing. Love that one of the few things he's ever verbally said is riddled with teenage attitude!

The Scariest Night Ever

Warning: This post is long! I wanted to write about this ever since it happened but haven’t felt up to it until today. And writing this has felt healing almost as if I am purging the experience.

It’s ironic sometimes how things can be going so well at one minute and within a few hours end up disastrous. That’s exactly what happened Christmas Eve night.

After having such an amazing time with Noah at the Christmas Eve candlelight service, we all went back to my Mom’s house for our "Christmas Eve Extravagana."  We had a great time eating and spending time with one another.  Noah was in a great mood and was full of giggles. We let him stay up later than usual and he finally headed to bed just before 11.

Around midnight, I headed to the bedroom. We were spending the night at my parents’ house and there J, Noah, and I all sleep in the same room. Noah was under the covers asleep in the middle of the bed and J was lying next to Noah  watching TV. I was sitting at the end of the bed with my lap top uploading pictures from the evening while quietly talking to J.

A commercial with music came on TV. I noticed Noah’s legs kick once and thought maybe he heard the music and was fussing about it. But he was still moving so J pulled the covers off of Noah to see what was going on while I quickly stood up to turn the light on. I came back to the side of the bed to check on him (this sounds like it took awhile but it all really happened in a matter of seconds) and saw his whole body convulsing while his eyes were open but rolled back. I immediately knew he was having a grand mal seizure and said so to J. J loosely put his arms around Noah and began quietly telling him it was OK.

I was panicking but desperately trying to hold it together all at the same time. Noah has myoclonic epilepsy (a type of epilepsy where the seizures are more a jerking of the arms and/or legs and usually only last 1-2 seconds.) Noah has (until that point) NEVER had a grand mal seizure and hadn’t even had any of the myoclonic seizures in a very long time. I have known since he was diagnosed with myoclonic epilepsy at 14 months old that he was at risk to develop grand mal seizures and him having a grand mal seizure has always been one of my fears.

I asked J if I should get my Dad (who was sleeping upstairs) at the same time as he was telling me to get my Dad. I'm not sure what we both felt my Dad could do but he is older and wiser and has First Aid/CPR training. I took off running towards the stairs loudly yelling my Dad’s name (later I was told by my Momma I was screaming like a banchee.)  After yelling his name twice he called back and asked what. I shouted up the stairs that Noah was having a grand mal seizure and I needed him NOW. He said he was coming and then I heard J yell for me from the bedroom so I ran back towards the bedroom. J said the seizure was getting worse and to call 911. At this point, my Dad has made it downstairs and is on the other side of the bed gently talking to Noah with Jason.

I ran to the kitchen and of course the phone is not on the base. I ran in the living room and that phone isn’t on the base either. I flipped on a light and finally find a phone on the side table in the living room all the while reminding myself to breathe. I call 911 and get put on HOLD! After what seemed like an hour, a 911 dispatcher is on the line. I talk fast normally and was trying to tell myself to slow down as I explained the situation to her, give her the address, and then run back to the bedroom to check on Noah and answer her questions about what he is doing. I repeat her instructions to J and my Dad.

Noah was still convulsing badly at that point but I know that my Dad and J have him so I began taking care of the things the 911 dispatcher was telling me to do like turn on the porch light, gather up Noah’s medicines, throw on clothes, and make sure the family pets were confined (except I accidentally forgot about Pasiley – poor thing was in the room watching the whole ordeal.)

After what seemed like an eternity, I heard sirens. The paramedics and a fire truck arrived. Finally, Noah had stopped seizing. The whole seizure last about 6-7 minutes. At that point, he was conscious (he never totally lost consciousness) but he was pale and super lethargic. The paramedics took his blood pressure and vital signs. His heart was beating rapidly and his blood pressure was sky high. Thankfully, he was breathing just fine.

Noah was put on the stretcher and they tell J and I that we can both ride in the ambulance. My Dad says that they will follow us in the car. I follow the stretcher out of my parents’ house. My Mom was standing in the hallway and she squeezed my hand. I asked her if she was going to come to the hospital with Dad and she says yes, of course and then told me my brother (who had been asleep in a room upstairs and slept through all of this including my high pitched screaming to my Dad that was so loud they probably heard in the next county) would be coming too.

We get to the end of the driveway where the ambulance is parked and they told us one of us can ride in the back and one in the front passenger seat. They ask who would be riding in the back with Noah and I immediately responded. I sat on a bench across from the stretcher Noah was on.

Not long after getting in the ambulance, Noah began to cry a deep grunting type of cry that I have only heard him cry when he is coming out of surgeries. I had to sit in the seatbelt on the bench and could reach him but did manage to at least be able to hold his hand. I quietly talked to him and reassured him that I am right there with him, that I’m not leaving him, and that if he is scared, it is OK to be scared. I told him that they were taking us to a hospital so the Doctor can check him out.

That ambulance ride took FOREVER (time seems to stop during a crisis and everything seems to take longer!) I’ve decided that I don’t like ambulance rides very much. I could not see out the side window so the only window I could see out was the one in the back and the only thing I could see out of it was the lights of the car behind us which I assumed was my parents and later found out I was right. But because I could not see out the side window, I could never figure out exactly
where we were.

As we neared the hospital, Noah finally began to stop crying and calmed down. We got out of the ambulance and I walked right beside the stretcher as they took quickly took inside the ER.

They checked his vitals and monitored him. He became more alert; signing to us and interacting with the nurses. From that point on, things were pretty uneventful. It was just your standard wait forever in the ER waiting game. After awhile, the Doctor told us that he doesn't really know what caused the seizure. He gave Noah a medicine to prevent more seizures right then and a prescription for more for later and instructs us to call Noah’s neurologist as soon as the office opens back up.

My wonderful parents and brother had been waiting in the waiting room the entire time. I felt guilty because at this point, it was 4 AM but they assured me it was fine and there was no other place they’d rather be at that moment than the hospital. Even though they weren’t able to be back in the room with us, it was definitely comforting to know they were there.

While I was standing in the driveway waiting on the ambulance, I texted a few friends and posted on Facebook via my phone letting others know what was going on and asking for prayers. Thank you for all of you that saw that on Facebook or received a text and prayed. Knowing that my baby was being lifted up in prayer by so many was comforting.

That was seriously one of the scariest things I have ever experienced and I think I aged 10 years in the span of an hour. I felt so helpless and unsure of myself but I silently prayed and knew that God would take care of my Noah.

Christmas Day was unlike any other Christmas Day. We are usually up early on Christmas Day but we all ended up sleeping until after 10 AM because we were so exhausted. When we finally did wake up, we let Noah see what Santa had brought him. We tried to keep things really low key and calm because the Dr. had said that we needed to try and keep him from being overwhelmed or over stimulated and that he needed to be calm and rest. Noah was very clingy and spent much of the day in my arms, which was just fine with me.

You are probably wondering how Noah is now. Thankfully, he has not had another grand mal seizure but he has had some of the myoclonic seizures. Those got pretty bad Christmas Day night so I called the neurology answering service and luckily his neurologist was the one on call. He said we could give Noah another pill from the prescription that the ER doc had given so we did and the seizures slowed down. He’ll be seeing his neurologist tomorrow morning.  I’ll keep you posted on and would appreciate you keeping Noah in your prayers and pray that he doesn’t have any more seizures.

Noah's Doctor Appointment Recap

A few of you knew that Noah had a Doctor's appointment today with an orthopedic doctor about his feet so I thought I'd update you. This appointment was set up through the school and the Doctor saw multiple children while he was there so that the parents and physical therapists could all discuss the child with the Doctor. (This is not the first appointment we have had this way and I have come to love this format!)

We hadn't checked Noah's height in awhile so I was floored to find out he is 5 foot 3! I am only 5 foot 4ish! He just doesn't seem that tall since he is always sitting! He also ways 71 lbs. I'm lifting a 5 foot 3, 71 lb child on a daily basis! Holy smokes, people!

The Doctor said Noah's feet are pretty flexible but thought he would benefit from the type of AFO's (braces for his feet) that are made from casting. (They make a cast of each foot and then carefully cut it off and they use those to make the braces fit exactly to his foot.) The goal with the AFO's is that it will help Noah be able to at least stand with support while transferring which would be nice since he is getting so heavy and all.

As luck would have it (or good scheduling on the part of the PT dept) the casting guy was at the school too. So we had the casts done and picked out his new braces right then. The kids can choose a "tattoo" that goes on the back of their braces to make them more fun so I handed Noahie the sheet and pointed out a few ones he might like and even suggested the butterfly just to make him laugh. He was having a hard time choosing and then we found out that he could choose two different tattoos - one for each brace. The space shuttle was a close runner up but ultimately he (predictably) chose the tiger head and the tiger paw.

Then it came time to discuss his new wheelchair. For Noah this meant picking out a color. The seat will be black but the frame will be a color. I personally would have liked all black because it would go with everything and look nice in pictures but this is Noah's chair and he spends so much time in it so he needs to choose it and be happy with his choice. I thought he would choose the orange but he chose purple instead.

Getting new equipment is always just a tad bit exciting I think.

Health Updates and News

I've gotten slack lately but I just haven't been feeling like myself. I've been pretty sick, went to the doctor, got sicker, end up dehydrated, and went back to the doctor. At that point, I'd lost 13 lbs in 12 days and was dehydrated. They think I have a bacteria infection in my blood most likely caught from when Noah was in the hospital. I got new meds and was feeling better then I relapsed again. Went back to the doctor and am on different meds now. I'm feeling a bit better again but am still going to go to a GI so we can get to the bottom of these issues. 


Noah's doing well. He is able to get off the bed by himself again although it does make me a tad nervous again. He is crawling around some too. Still haven't made it into his regular wheelchair yet but we'll try that soon since school is less than a month away! Once the school opens back up, I'm going to call and get their advice on whether or not he should go to school in the reclining wheelchair or his regular wheelchair and a couple of other concerns. Hopefully he'll be up to full days but if not we'll figure something out or if the reclining wheelchair is an issue we'll just drive him to school instead of him riding the bus for a bit. We'll get it all worked out - he is going to be so excited about going back to school! 


And the news..... we found a house!! I'm beyond excited to begin living in our own one story (no more lugging a 60 lb child up and down steps - thank you Lord!!!) house. It's a cute little house in an older neighborhood and as I said no stairs and all hardwood floors - which is going to be awesome for Noah! It's three bedrooms and has a fenced in backyard for Paisley. We get the keys on Thursday! We have some painting (the kitchen is currently bright lime green - I need sunglasses to deal with the brightness!) to do first and once that's all done we'll begin to move our stuff in.

So, if I get quiet again, it's probably because I'm busy fixing up the house or moving. Once we get the house looking like a home, I'll bombard the blog with pictures. 

MIA

Missed me lately? I've missed you too! I have been sooooo sick, my friends, so sick. It all started about two weeks ago when I was picking up Noah and my back spasmed. I went to the doctor and they said I either had a pulled muscle or a bulging disc and sent me home with pain pills and muscle relaxers to rest and the promise of a MRI if things hadn't improved in a week.

A week later I was no better and had added stomach pain and nausea to the mix. Went back to the Doctor who thought it was the pain pills making me sick. He switched me to a different type of pain pill, added a pill for the nausea, and sent me on my way again.

Things continued to get worse. I began having writhing stomach pains, got severely dehydrated, and lost 12 lbs in 11 days. Yesterday I went back to (a different) Doctor. First thing he did was hooked me up to an IV and started pumping fluids in me. Then he started running tests to figure out what the heck was going on. Turns out I have a bacteria infection in my blood stream - probably the same infection I caught when Noah was in the hospital and was treated for only that round of antibiotics didn't kill it, just made it weaker, and it's been festering ever since. It's probably just an odd coincidence that it all happened at the same time as the back pain.

So now, I'm on a stronger dose of antibiotics and a stomach tranquilizer for the stomach pains. I am feeling better today. Not 100 % yet but definitely better. I go back to the Doctor on Saturday so they can re-check my blood levels and make sure the antibiotics are killing the infection.

Noah is doing well. He is recovering nicely and seems to be a bit more like the "old Noah" each day. He still has moments of pain and still gets frustrated about things and I'm sure not doing a whole lot this summer (he usually has summer camp every summer) is starting to get to him.

I'll post some new pics and what not once I'm feeling more like myself. 

Houston, We have a Surgery Date!

It feels like "lift off" now that we finally have a surgery date for Noah's Scoliosis surgery. It's May 28th. I'm teary eyed as I type this feeling both relief and even more worry. It just feels so real now to have a date. So so so very real.

Moving Forward with Noah's Surgery

We met with another surgeon today - a pediatric surgeon. He agreed with the other surgeons that Noah definitely needs the surgery and he also felt that there could be pulmonary problems (like his lungs not having enough room to breathe down the line) which has always been a huge worry of mine.  We liked him, felt comfortable with him, and got a good vibe from him (and it didn't hurt that he had on a Scooby Doo tie - kidding!) so we decided to move forward with the surgery. We don't have a date yet. It will be sometime this summer hopefully.There's still some differences between what this surgeon says versus the other surgeon and I'm not real sure how I feel about that. I know that each doctor is probably going to do things a bit differently based on different training, schooling, and experiences and I just have to trust that God's hands will be guiding this surgery.

I feel relieved that things are finally moving forward but I feel uneasy at the same time if that makes any sense. My baby is going to have "brutal surgery!" It's scary! We are definitely going to need all the support, thoughts, and prayers we can get from our family, friends, and prayer warriors as we get closer to the surgery!!

Gettin' Over it

Notice all the medicine there in that picture? That's a lot of freaking medicine isn't and that doesn't even include all the medicine Noah takes on a daily basis for seizures, behavior, and muscle control. You've probably noticed I have been super quiet for the past week and now that you have seen that picture with all that medicine you've probably guessed that we've had some sick peeps in our house. All of us actually but techincally I guess I should have said were because we are all getting over it. We're not all one hundred percent yet but we are definitely on the mend.

J brought the sickness home first a week ago coming down with strep throat and then two days later during the night Noah's fever spiked up and he was sick too. The next day I made a doctor's appoinment for Noah and he was diagnosed with H1N1. Since I was feeling a bit icky and coughing I was tested too and although my test came back negative the doctor went ahead and started me on meds too knowing that I'd probably come down with it while caring for Noah.

Its been a long week. I was trying to care for Noah and J at the same time while trying to take care of myself. The first three nights Noah had it his fever spiked up high every night getting as high as 102.8. With Noah having epilepsy high fever is always a concern because it could induce seizures so needless to say I am always a little stressed when Noah's fever spikes. I pretty much stayed up all night those nights taking his tempature every hour and then cat napped during the day.

He is feeling better now thankfully. We went ahead and sent him to school today. J is feeling a lot better too. And I think I hit the worst of it Sunday and yesterday so hopefully I'm on my way to recovery. I plan to try and rest and catch up on my missed sleep today and tomorrow and then we meet with a new pediatric surgeon about Noah's back surgery on Thursday.

The New Doctor

Yesterday we met with a different Doctor regarding Noah's Scoliosis and the surgery he needs. He would be able to do the surgery before December - he probably couldn't do it before May but May is good for me because that was the time line I had been thinking all along.

However, I do have some reservations about him. Some of his answers to my questions totally differed from the answers from the other Doctor. (Meaning the Dr. from Shriner's who has operated on Noah before and who specializes in this sort of thing.) For example, the Dr. at Shriner's had said that we couldn't pick Noah up under the armpits for a year and this new Dr. said a week or two when I asked him that question. I'm not sure why the huge difference of opinion and think it could stem from the Shriner's Dr. being a specialist in dealing with children with special needs and the new Dr. isn't.

Also, this new Dr. hasn't operated on a ton of children although he does all his pediatric surgeries with a pediatric surgeon in the practice. So, where things stand now is the new Dr. is going to consultant with the Shriner's Dr. and the pediatric surgeon and get back to us. 

A New Doctor

On Monday, we'll be heading to a new doctor in hopes that he could do the surgery that Noah needs sooner than the other doctor if we like and feel comfortable with him. I have some reservations about him because Noah's other doctor told us that he mainly does adults and not children, not to mention special needs children but he was the closest which is why we chose to meet with him first.

I am hopeful though which is really all I can be at this point. Keep us in your thoughts and prayers and I'll update when I can!

His Granddad Lowers His Blood Pressure

Funny/cute story about Noah and his Granddad......

When we were at Shriner's for Noah's appointment last week, they did his vital signs which includes his blood pressure. His blood pressure was very high. The nurse asked if he was anxious and I said that he probably was so she took it again. Still super high. 

She switches blood pressures cuffs and tries a third time - still super high. I can tell she's worried and that we need to somehow get the blood pressure down. She suggests walking him around for a minute to calm him. My parents were at the appointment with us but not in that room so I suggest getting his Granddad to come talk to him. The nurse thinks it is a good idea so I leave Noah there and go fetch Granddad. 

While walking back to the room where Noah was with the nurse, I quickly explain to my Dad that Noah's blood pressure keeps coming up high and we think it's because he is anxious/nervous about the appointment, but we're hoping Dad can calm down a bit and help him be still while she takes his blood pressure a fourth time.

Dad comes in and goes directly to Noah and leans down on his level and whispers some things in his ear. (I'm not allowed to know what - it's between Granddad and Noah!) Then he convinces Noah to let the nurse take his blood pressure a fourth time and to be very very still while she is taking it. (He wasn't being still before which could also mess up the number.)

So she takes his blood pressure a final time and it was with in the normal range! So, for Noah his Granddad lowers his blood pressure!

Stress Causes Headaches - Go Figure

I went to the Doctor for myself today. I have been having headaches for awhile now and put off going to the Doctor as long as I could. They were becoming more frequent and more painful so when I was dealing with a really bad one on Sunday I told J that I'd had enough, I wanted to go to the doctor. My Mom had suggested that they were probably brought on by stress and I suspected that she was right but knew I needed to go the doctor anyways to make sure that's what it was and so that he could give me stronger medicines to try and deal with them.

We were right - they are tension headaches brought on by stress. My doctor said he usually tells his patients to eliminate or reduce their stress. Well, that's kind of hard to do when it  your son who is bringing on the stress. Of course it's not Noah's fault but you know what I mean. I filled the doctor in on what has been going on with Noah in the past month and he said I gave him a headache just explaining it all to him!

My doctor was very patient with me as we discussed medication choices. I needed something that would stop the headaches without making me immediately sleepy or in such a deep sleep that I might not hear Noah should he need me since J works at nights. 


So we are trying a couple of different things and hopefully we will quickly find medications that work and help the headaches.

Update after Noah's Shriner's Appointment

Several of you have sent messages wondering how Noah’s appointments went on Friday and I have been meaning to come and update you all but it has been a very busy couple of days.

So on Friday, we met with the anesthesiologists at Shriner’s. That went pretty well but I really wasn’t expecting that part to not go well. Noah’s never really had any breathing problems or been a sick child and all of that plays in his favor in regards to having the surgery. The only tricky concerns of surgery seem to be related to his behavior issues and the autistic meltdowns he has. He might have to be sedated after surgery longer so that he doesn’t pull his Ivs out. So the anesthesiologist gave the OK for Noah to have the surgery.

Although we really don’t want Noah to have to have the surgery (who wants their kid to have surgery?) we know that it is the best thing for him so we decided to move forward with the surgery. The problem is though, after all this thought, prayer, research, and time to get to this decision, the surgery can not be scheduled until December. His doctor feels like waiting till December could be too late - he’d be too stiff by then and we could not do the surgery.

So his doctor has recommended that we contact other doctors and see if they can do the surgery sooner. His doctor gave us the names of three doctors that could do the surgery that he recommended. One is located in Charlotte, North Carolina, another in Columbia, South Carolina, and the third in Greenville, South Carolina. The doctor in Charlotte, North Carolina was immediately ruled out due to out of state insurance stuff. We have an appointment with the doctor in Greenville on March 1. This doctor mainly works with adults though so I have additional concerns should we decide to move forward with the surgery with this doctor.

Yes, I feel frustrated with the way things have gone down. It took a lot to finally get to the decision to move forward with the surgery and then something like scheduling messes things up and  we’ve taken a step backwards.

So, that’s where things stand now. Your continued prayers mean a lot to us.

Noah's Shriner's Appointment Tomorrow

Tomorrow is Noah's appointment with the anesthesiologists at Shriner's. we'll also be meeting with the doctor who we met with last time and hopefully someone from physical therapy too as I have a million questions for them.  I wish I could say that I'm ok with everything but I'm not. Discussing the chances that your child will survive a surgery that in your heart of hearts you have come to realize he desperately needs is not an easy thing for a Mother to discuss. 


I've been trying to live in the moment lately. I want to enjoy each moment with him, with my family, of my life. All of this has really made me realize life is so so so precious and we really do take it for granted sometimes.

I know we are being prayed for by people all over the country. I can feel there prayers and support and that's lifting me up and keeping my head up. I know God is looking out for me and especially my little guy and that too sustains me.

To read what all was said at the first appointment check out this post written right after it.

Researching, Reading, and Praying

I know I've been pretty quiet since my overwhelmed post that I wrote right after coming home from Noah's doctors appointment. My head is still swimming from all the information!! Over the past week, I've been reading, researching, and talking to other parents' whos children have the type of Scoliosis associated with Cerebral Palsy. I've also been praying, (lots and lots of praying!) soul searching, spending time with my family, and having a small meltdown or two a long the way. 


Let me tell you, I was right, talking with other parents was definately the way to go. Albeit some of the information hasn't been positive and definately hasn't been easy to digest or what I wanted to hear, it was truthful information from a parents point of view. I need to know what we are walking into should we choose to move forward with the surgery and while Noah's doctor is full of knowledge, other parents who have lived it are able to give me a different type of knowledge. 


So many of you have reached out to me via text messages, emails, cards, phone calls, etc - thank you to all of you for that. Even if I haven't yet had a chance to respond, every thought and prayer has been and is appreciated. It means a lot to us to feel your love and to know that so many people are praying and thinking of us.

Many of you have asked how Noah is doing. You recall me writing about how I thought he was starting to maybe feel a little bit of pain. He has had a few moments where I feel like he may be hurting but overall he is doing well and is just being his usual silly and lovable self.

So, that's where things stand as of this moment!