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.......

Celebratory Rice Krispie Treats

This past weekend, we celebrated Noah being exactly one year post his Scoliosis surgery. How did we celebrate this milestone you may ask? 
Well with celebratory Rice Krispie Treats of course! 


Linking to Special Exposure Wednesday at 5 Minutes for Special Needs and Wordless Wednesday at 5 Minutes for Moms

One Year Post Scoliosis Surgery

One year ago today Noah had his Scoliosis surgery. (This is the post I wrote one year ago today in the wee hours of the morning before waking Noah up and driving to the hospital. It brought tears to my eyes to re-read it.) Oh what a scary and stressful time and experience that was. At times it seems like such a distant memory that it feels like it was years ago while at other times I can recall all the nervous and scared feelings like it was just yesterday. Thankfully to Jesus, our friends and family, all of those who prayed and sent cards to Noah via his card drive, we made it through that experience. 


One year post surgery, Noah is doing GREAT! He rarely has pain anymore. He'll wince occasionally when he is lifted and sometimes his back will bother him if it rains or is very cold and the doctor said that those are little things he might have to deal with for the rest of his life but the improvement is so drastic and great that I think dealing with that is worth it. 


And you may be wondering how will we celebrate this one year post surgery milestone? Well, Noah said he wanted Rice Krispie treats so we'll be toasting those! 

Thankful for Surgery

Last week we got a phone call from Shriner's Hospital saying that Noah's pre-op was coming up and giving us the date and time for the pre-op. If you recall, originally Noah's Scoliosis surgery was going to be in December at Shriner's but Noah's doctor felt that was going to be too far away and that Noah couldn't wait that long and we found a different doctor and had the surgery in May. I had called and cancelled the surgery at Shriner's in June but I guess they didn't get it in all the records or whatever. 


Once we got all that straightened out, I laughed for a minute at the irony of the whole phone call and then I said a prayer of thanks. I honestly had forgotten he was supposed to have the surgery in December, so close to Christmas! We would have made the best of it, of course, but I am so thankful that Noah has already had the surgery, is doing so great, looks so great, and we are going into the holiday season rejoicing that, not barely starting his recovery process. 


And how adorable is he in that picture doing the angel choir boy pose. He melts my heart. Melts it.

Scoliosis Surgery Follow Up

Today Noah had his three month follow up with the surgeon who did his Scoliosis surgery. It went super well! They did x-rays again (the first since the surgery) so that he could see the changes between now and before surgery. Before surgery Noah's curve was 96.3 degrees. Today it was..... (drum roll please!) 11.9 degrees! The doctor showed us the before and after x-rays and the difference was just SO amazing! He is very, very pleased with Noah's progress.

There have been a couple of instances in which Noah is having a little bit of pain. I was a smidge concerned but he assured me that it is normal and that Noah could have bouts of pain here and there for up to a year after the surgery. I have been giving him Tyenol when he has pain and the doctor said that was the right thing to do.

It was one of the best doctor's appointments we've had!

Surgery Before and After Photos

Considering all that he has been through since May, Noah is doing so well. He still has moments of pain, mainly only when he is being moved or carried and is no longer on any pain medicine other than Motrin or Tylenol occasionally. He’s not totally one hundred percent yet and that may still take a little while (it was a brutal surgery after all) but each day he seems a smidge more like the “old Noah.”

I had previously written how Noah was having a lot of “flutters” (seizure like activity) and am happy to report that those seem to have gone away on their own. The stress and pain of surgery could likely have been the cause of them. He is having more meltdowns than he typically does but again, with all he’s been through I think it’s understandable.

He is sitting up pretty well but still not for long periods of time so we will be working on that as he will need to be able to sit up for most of the school day when school starts in a little over a month. Seeing him sit up now is just amazing. He does so well. He looks much taller (well he is taller, the surgery did add a little height) and more grown up now.

I leave you with some amazing before and after pictures……

You can click on them to see them larger if you need to. Amazing don't ya think?!? 

Sittin' Up

Earlier today J and I were going to change the sheets on the bed and needed somewhere to put Noah. I suggested putting him in a chair that was in the room so we gave it a try to see how he'd do. He has been sitting in his wheelchair in an upright position a few minutes each day but this was a regular chair. He sat there for about 5 minutes and then was tired and need to lie down and rest but he did it! He tolerated it, didn't fuss at all, and he looked so good.

See for yourself.............

 Look his feet touch the floor! 

It was AWESOME to see him sitting so straight even if it was only for 5 minutes. It's a great start! 

Baby Steps

Well the past few days have continued to be a mix of ups and downs. On Wednesday, Noah had a really bad day with lots of meltdowns and fussing all day long. It was rough. Thursday was a smidge better but he still had meltdowns and lots of fussing just not as much as Wednesday. Yesterday (Friday) was a bit better than Thursday with only one meltdown. He seemed pretty tired yesterday and spent a lot of time in bed just watching his favorite Sesame Street videos.

Noah will sit in the (reclining) wheelchair for a bit and then get tired and have to switch to the bed for awhile. Then I'll get him back out of bed to sit in the wheelchair for a bit more and it goes like that throughout the day. 


As the doctor ordered at the follow up on Monday, we have been getting Noah to sit in the wheelchair in a more upright position a little bit each day. We started off with just a minute and are slowly increasing it each day. Yesterday he managed to sit in the wheelchair in an upright position for about 2 - 3 minutes with no fussing! He did fuss a second when I went to put the wheelchair upright but once there he sat and listened to my Mom sing to him. He was actually in a really good mood and gave us lots of smiles and giggles just like the old Noah. It's a baby step but definitely one in the right direction.

Post Op Follow Up

Noah's Post Op Follow up was this morning and the Doctor said that he looked good and he was pleased with Noah's progress so far. He said that Noah would probably have a lot of pain for 6-8 weeks following the surgery and then it would get better. He said that the incision looked great and for us to slowly start letting Noah sit up for a minute or so a day and build up from there. He also said Noah would need to build his balance back up. I specifically asked about that because when we have Noah in the shower chair I've noticed his balance is very off. He advised us to continue taking things  slowly as sitting up will tire him out quickly at first. All in all, Noah's very slowly moving forward and we'll take very slowly moving forward versus moving backwards any day!

Very, Very Slow

Today was a little bit better than yesterday. It's still exhausting and overwhelming at times of course and I'm sure it will be for awhile.

Noah and I both slept late (although he was up from midnight to 2 AMish) but I think the extra sleep helped my mood immensely. I just needed some extra sleep to make up for all that I lost when Noah was in the hospital and when I was sick. Noah's little body needs the extra sleep as well. Even after he woke up he stayed in the bed with J and watched videos. He got used to J being around a lot when he was off during Noah's surgery and hospitalization and he's missing him again now that he's back working so he wanted to just be near him and luckily J can sleep through just about everything. 


My Mom was telling me how long it took her to recover from her knee replacement surgery and how weird it felt to have something foreign and not her own in her knee. I don't know how much Noah can comprehend about their being something foreign in his body - if he realizes that there is actually a rod and screws in there - but I'm sure it feels different and weird to him. And all of that just reaffirmed that this will be a very, very, very slow recovery. I gotta pull my patience out of my pocket but I know we will get there eventually.

A Couple of Days Home

Well it's been 13 days after surgery and we have been home 2 full days now. You are probably wondering how it is going.....


It's going OK. It's overwhelming and exhausting for me; really for everyone involved I think including Noah. I was not under the belief that we would come home and everything would magically be better because Noah was in a home environment versus the hospital environment and I'm very glad that I wasn't under that impression because that would make all of this even harder to deal with. 


Noah is sleeping better but he is still in pain, hard to comfort, frustrated, etc. He can't be alone for even a minute because he tries to do things that he shouldn't be doing yet like get off the bed on his own, crawl around, get out of the wheelchair, etc so someone has to be with him at all times. He gets frustrated because he can't do all those things.

He is having a lot of flutters which are seizure like activity. He hasn't had seizures in a long time but I guess sometimes surgery can stir all of that up and hopefully it will get better though. I have put a call into his neuro though so we can have his levels checked.

It's all going to get better. I know it will; it's just slow going. 

Wordless Wednesday: Collage of Cards

A collage of just some of the cards Noah has received.... 

Thank you to all of you who have sent cards! 

And a lot of people have been asking if we are still accepting cards and the answer is yes. Noah has a long recovery at home ahead of him and the cards will help during this time. He LOVES them.
(You can find the address for the card drive here if you need it.)


For more Wordless Wednesday check out 5 Minutes for Moms, Special Exposure Wednesday at 5 Minutes for Special Needs, and Wordless Wednesday Headquarters.

Noah's Recovery - Update # 10 - We are Home!

Well after 10 days, 8 IV's, a couple of complications and set backs, and 1 major surgery, we are home! Well, actually at our second home, my Mom's house. We had planned to stay here for a few weeks so we'd have help and no stairs to contend with.

Last night giving the blood transfusions was problematic. All of the sudden there was blood everywhere. Apparently Noah's vein collapsed and now he has a huge and I mean huge bruise on half of his lower leg. He was able to get about 1 1/2 units of blood which apparently did what the doctors hoped it would and "perked" up his body. His hemoglobin was much closer to normal.

After some debate between two doctors after they had already told Noah he could go home, they decided to finally let us leave around 4:00 PM this afternoon. He came home on antibiotics for the pneumonia and pain meds for the surgery. He still has a long way to recover from the surgery and is still in a lot of pain but at least he is home. 

The ride home was a little painful for him. After he got home and rested a bit he was asking for his Granddad so we put him in the rental, reclining wheelchair and I pushed him to the door so he could look out and wait for his Granddad which is something he usually does when he is at my parents except he usually does it from the floor on his knees. He is getting a little frustrated that his body doesn't work the way it did before the surgery. He doesn't understand that it is going to take a little time. It's gonna be rough for awhile but at least he's out of the hospital. 

Noah's Recovery - Update # 9 on day 9

Noah was less fussy today. His temperature is still up and down, up and down but not quite as high as yesterday. The highest it reached thus far today was 101.5. They repeated the chest x-rays and they show that the pneumonia is getting better.

Noah's hemoglobin was low and his white blood count is elevated so the doctors have decided to give him two units of blood. It's taking awhile for them to find blood that matches Noah's so now they are having to send outside the hospital for it so it may be sometime tonight before he gets the transfusions.

He took another shower today - it exhausts him to do that though but I know things like that and moving will get easier as time goes on and he moves around more, gets less sore, and feels better. It's just hard for him to feel better with this fever and pneumonia. He also ate about 7 bites of a cheeseburger.

And my funny thought for the day: (I'm trying to keep my humor and still find the blessings on this rollercoaster ride.) I got emotional seeing Noah in the shower and his back straighter for the first time. J got emotional seeing Noah's personalized autographed CJ Spiller poster for the first time. (J says he is the greatest Clemson football player ever and he's in the NFL now for those of you who don't know who CJ Spiller is.) That's the difference between men and women folks! ha!

Noah's Recovery - Update # 8

Well, we are on day 8 and IV number 7....

He went one whole day without being stuck but it decided to stop working at about 6 AM this morning as the nurse was trying to give him a dose of antibiotics through the IV. It took three tries to find a vein that would take the IV. His poor veins are shot.

This morning when Noah's surgeon came by to check on him I told him about giving Noah a shower yesterday and how straight he looked and how it brought tears to my eyes. He thought this was wonderful and then shared with me that he saw Dr. P yesterday. (Dr P is the original doctor from Shriner's that we saw in January but suggested we see other doctors since he could not do the surgery until December.) He showed Dr. P the before and after x-rays of Noah's surgery and Dr. P was amazed at how straight he was. Apparently Noah's surgeon is using a method that Dr. P has not tried yet and he was even going to sit in on Noah's surgery last Friday to watch this new method in action but got called away. This was reassurance to me that we made the right decision. I had some qualms initially about not having the surgery done at Shriner's because they specialize in these types of surgeries and working with children like Noah but that was God letting me know that we made the best decision for Noah by choosing to use the surgeon we did. 


The fever is still up/down and up/down. It's so frustrating. We still don't know what is causing it. All the tests for infection and what not are coming back normal according to his surgeon so he ask the pediatrician to come back in. He did and still thinks it is because of the pneumonia yet his lungs sound clear and his oxygen levels are pretty normal without receiving additional oxygen. So, if the fever continues to spike up and down we may repeat the chest x-rays tomorrow. 


My niece has been busy with work the past few days and hasn't been able to bring cards down here but she was off today and made her way here with A LOT of cards and some packages, Apparently Noah was receiving SO many cards that the post office gave him a free upgrade from a small box to a big locker for all those cards and packages.

Thank you, thank you, thank you to each of you who have sent cards. No, it's not too late to send cards - Noah will spend most of the summer at home recovering so keep them coming. You can find the address and more information here. I have been so touched at how many of the cards are so personal including orange and purple colors in the cards, tigers, Clemson, dogs, the Beatles, baseball, etc... I will try and share some photos and details of some of the stand out cards in an upcoming post. We currently have cards from 26 states - we have a map and are putting a smiley face sticker in each state he receives a card from; fun and educational for Noah all at the same time.

Noah's Recovery - Update # 7 - The Temperature Tornado Continues

I was running a low grade fever this morning so I stayed at my parents to rest and left Mom and J at the hospital to tend to Noah. I came to the hospital around lunch time. The first thing I noticed when I walked in was how good Noah looked. He seemed to have gotten a lot of his color back overnight and looked much more like the "old" Noah than he has in days. 

Noah's fever has fluctuated a lot again today. I've taken to calling it the Temperature Tornado since it is so up and down, up and down all day long. It doesn't do the normal thing where it will be low in the day and then high it night. It goes up and down all day long. It's frustrating to me.

The blood cultures I mentioned yesterday, the first 24 hour results came back showing nothing. The second blood test they did yesterday, testing for inflammation came back slightly elevated but that is probably just from the surgery.

He got out of the bed again today for two wheelchair rides. Well actually the nurse called it a reclining wagon. He really enjoyed them both I think. He giggled a few times during the rides. 


Noah took his first shower today. That was big I think. It wore him out but he did good. He sat on a little shower chair - I cried tears of joy at seeing how straight he was. He wasn't totally straight yet, needed to still lean some but gosh he is so much straighter than he was before. It was really a beautiful moment for me. 

Noah's Recovery - Update # 6 - Another Day, Another IV

Update number 6 and still on day 6.....


In my last update I mentioned I was going to the doctor. I did. I have a severe sinus infection and my white blood cell count was elevated which means I have some other type of infection. I'm now on antibiotics for the infection and sinus meds for the sinus problems. Geesh! I can't stay with my baby tonight either....


In my last update I also mentioned that they had taken blood from Noah to do cultures. I wanted to explain that a little more in depth. With those it takes 24 hours to get the first set of results, 48 hours to get the next set, and then 72 hours for the final set.

The surgeon came in this afternoon and thinks that other than the pneumonia and the issues it is creating and the temperature, Noah looks good. He thinks his back looks good. He said that if it were an infection in the spine or incision we would probably see some drainage, redness, tenderness, etc. and he doesn't see any of that. I thought that was good news. I'd hate for it to be something related to the spine and they have to operate again!!

They finally were ready to get the second antibiotic going when they realized the IV wasn't in properly. It was leaking. I don't think it was his fault this time. Poor guy - he has had 6 IVs in since he has been here plus an art. line since he has been here.

Noah's tempeature is like a roller coaster - it started out the day at 102.4, made it to 100.8, then 99.8, and is now back up at 100.8.

Noah's Recovery - Update # 5

It's day 6 after surgery but update number 5. Yesterday was just an exhaustingly busy day that flew by and I didn't have time to write a long update.

Noah still has pneumonia. His oxygen levels do seem to be doing better with the new breathing tube though. However they are going to have a respiratory therapist come in now and do some chest exercise therapies on him three times a day to try and get him breathing deeper.

His fever is up to 102.5. They took more blood this morning to do cultures to see if he has an infection. Please pray that it is NOT an infection. This would be very bad and could even require them having to operate again.

I'm not feeling well. As soon as my Dad gets here J is going to take me to the doctor. I'll update more when I can. 

Noah's Recovery - Update # 4 - Worn Out!

Not a good night/day for Noahie.We are both exhausted.  Last night around midnight his oxygen levels started slipping down to about 83-86%. They put him back on oxygen but it was still a battle to keep his oxygen levels above 90 so they called the doctor on call and the respiratory therapist. I did not sleep a wink last night because I was holding that oxygen near his mouth because he wouldn't keep it on his face. The doctor on call kept wanting to put an IV back in "just in case" every time his oxygen levels slipped below 90 and finally after a couple of nurses and I talked to him about how hard it is to keep an IV in Noah and talked him out of it for the "just in case" reason.

This morning Noah's regular doctor came in and was concerned about the oxygen so he ordered a chest x-ray. My Mom got here a little bit after that and I snoozed for an hour or so on the bed while she held the oxygen to Noah's face. When I woke up, Noah wanted a position change and asked for his shirt to be changed too so we gave him a little sponge bath and changed him. That's when we noticed how warm he was and that he had a fever! At that point, I got a pit in my stomach thinking that he might have pneumonia. Noah's always been super healthy and never really had pneumonia a lot like some other special needs kids I know of who seem to get it pretty frequently and I've read about so many special needs kids (who have compromised immune systems) getting pneumonia after surgery. My fears were confirmed later this afternoon with the x-ray. He has pneumonia. They are going to start him on IV antibiotics for it. They are also going to give him something to help him sleep tonight  - hopefully this will help because he did not sleep Sunday night or Monday night and he has only taken short little ten minute cat naps during the day. 

So, keep those prayers coming! Will update more tomorrow. 

Noah's Recovery - Update # 3 and Cards

Today has been another long day but I see lots of improvements in Noah from yesterday. And I got to hold him today! It felt a bit like holding my baby for the first time all over again. (haha) He pulled the IV out again so they decided just to leave it out and let him have whatever he wants to eat and drink so he has had some (cheese) crackers, tiger juice (orange Gatorade), and half of a PB&J sandwich. We also got a reclining wheelchair from physical therapy and he took a wheelchair ride. 

Thank you to all of you who sent cards thus far. Noah has looked at some of them and he has really enjoyed it. When he is being read different cards are some of the moments I notice cracks of smiles on his face. He has gotten so many different cards and many cards that have dogs, animals, etc on them. We have been tracking the states that the cards come from and he has ten states thus far. We've got a laminated map with happy face stickers in each state Noah's received a card from. We have been putting them up around the room and it sure is making the room a brighter, cheerier place! There are some on the wall right across from Noahie's bed and I have noticed him looking at them a couple of times.

He got one very special package from the folks at Clemson! It contained a football signed by the head coach and a tiger rag that was signed by the entire team along with a card with a tiger on it from the Athletics Director. Very cool stuff!  

Our church had all the kids in Sunday school make him a card so my parents brought back a milk crate full of cards. I have laughed many times reading some of the cute things the kids wrote on the cards. My favorite is one that has a picture of the Clemson football team with Noah as the quarterback. Super creative.

Please keep the cards coming! If you need the address or want a flyer check out the Card Drive Post.  Keep the prayers coming too!