Recovery

We are still recovering! It seems to be getting better little by little each day. The past two days Alex has eaten more and drank more than the previous. It still isn't much. He cries a lot, and seems sickly. He has sunken in eyes and has a hard time clearing his throat. I am hoping that we see a turn tomorrow or Friday. I am ready for Alex to be back to his normal, happy self (with less tension). Right now we are definitely not a happy camper.

This has made Elle not the happiest camper either. She seems to take on the idea that she will get attention too if she cries and whines like Alex. It has lead to some interesting battle of wills between her and I. However, with the arrival of G-Daddy tonight to help me in the absense of Matt...in Arkansas (read the Arkansas story if you have not already)...Elle has turned back into her charming self. Yeah!!

I am still praying and hoping for a recovery for Alex. He is still in some pain, and there is just nothing worse than seeing your little boy or girl in pain! Poor baby.

The Big Day

Well the Big Day has come and gone and we are now in recovery....recovering. Yesterday, we hit the road with the early birds to be at Cook's at 5:30. Alex was taken to the surgery waiting room where he received a little "giggle juice" through the nose. I asked if it smells different or if it hurts them at all, and the nurse said it was a lot like jumping into a pool and getting water up your nose. Awesome! So he cried and then went completely loopy. While I was waiting for him to be taken back to the operation room, my "old ENT" came in to work with the family next to me. Talk about awkward becuase my "new ENT" came in at that time to talk about his part of the procedure. ALthough my mom says she would have given the old ENT an ear-full, I just wanted that awkward moment to end. At least he now knows that I won't be coming back to him for his non-existing services.

Once Alex went back, Matt and I sat for a long wait. The ENT came out first after only 20 minutes to tell us that his part was over. Apparently, there was a lot of junk behind the old tubes. Now it is all cleared out and new long-term tubes are in place. Then he commented on the largeness of his tonsils and adenoids. He said that we should see some really big changes in his eating, sleeping, breathing, and possibly talking very soon!!

The spinal procedure took longer. We waited for another hour and half until Dr. Roberts came out to talk to us about how Alex did with the big one. He said that there was tension when he opened him up, and the tethered portion was a bit off centered. Not a big deal, just not what he expected when he made the incision. So he had to work a bit harder to get it all fixed up. All-in-all though, he did great.

An hour later he was brought up to his room where we have been since. The rest of the day went surprising well. He had morphine and pain meds, but overall he was alert and fairly happy. During the night he was up for a few hours at a time. They came in a lot checking his vitals and giving antibiotics. That would wake him up for a bit, but he didn't fuss. This morning (Friday), he was having a hard time. He didn't feel very good and threw up his medicine. He won't drink or eat anything because his throat hurts. Each time they turn him to his side to check his back, he cries too. He kept down Tylenol with codine finally and he is now asleep. I hope he is better when he wakes up, and tries something to eat and drink.

I think our prayers have been answered so far. The surgery went well, the recovery is going pretty good, and Alex is safe. Thank you all for helping me keep Alex in the arms of God for the past few days. We love you all for it!

Throw Another Shrimp on the Barbie

Why, oh why, old ENT, did you have to be such a slow moving doctor? I met a new ENT who, in 20 minutes, found a many errors in your "wait and see plan." You see, my Alex has tubes that are not working. My poor little man is not hearing right (now is the time you can cover your ears up and say something like..."stupid wait and see doctors." See how your sound is muffled? This is how my son hears right now). The ENT sent me to see his audiologist where we preformed some tests to figure out that the tubes were blocked. Which I have known since March when my other audiologist told me the same thing; however, good ole "old ENT" kept telling me that it is only one ear that is blocked. He explained that his other ear is working normally, so the one ear is good enough. Seriously! "New ENT" told me that is not good enough.

First Shrimp: New long-term tube placement in both ears.

Then we took a look at his chronic lymph node infections, and he said that his tonsils and adenoids are huge and he currently doesn't have an infection. I told him they are always like that. He wants them out!!

Second Shrimp: Tonsils and adenoids out of there!

He says that this will do amazing things for Alex's eating. I never really went into his eating problems, but Alex eats all pureed foods. He eats what I eat, but we just grind it up. Lately, I have added Goldfish or Cheerios, but many times the food gets caught in the back of his throat and he chokes. Heimlich remover initiated...oh wait, the Heimlich's didn't get rights to that name and so they re-termed it the Abdominal Thrust. Bad choice of names folks...it just sounds dirty! Anywho, with these guys out, we will hopefully move beyond this eating stage!!

Here is the best news! We are doing it all on Thursday the 22nd with his spine surgery! Alex will be going into Cook's on Wednesday afternoon for a pre-op registration and check-up. He will go home that evening and return at 5:30 on Thursday morning. We will start surgery at 7:30, and all the procedures will be done during his surgery time. We will then come back to recovery and stay for two days at Cook's so they can monitor the spine. The good part is that he will get a chance to be monitored for any other complications, as well as, have the IV to keep him hydrated from all the surgeries. I am so glad that they are getting everything done at the same time. It will be a tough few days afterwards, but it will be done!

Thank God for GREAT doctors, GREAT family, GREAT friends, and a GREAT GOD!

Most of all THANK YOU GOD FOR ALEX...and of course his sister, ELLE!!!

Fix You

There was a time, awhile ago, when I was watching So You Think You Can Dance. There are always moments on that show where you watch a truly touching piece of work, and wish you could be as fabulous as those amazing dancers.

Well, a few months ago, Matt was working his late night shift at the good ole' asphalt plant when I was drinking way too much wine in my living room watching my favorite dancers fight for their position. We had just heard about Alex's tethered spinal cord (literally that day), and I couldn't help but find this particular piece speak to me. It is one of those moments where it just seemed to fit. I find this to be my mantra each and every day even though it still makes me cry to overly think about the lyrics. I know some of you can relate, so please enjoy the explanation and the dance. I know I will "fix you" Alex!


Just copy and paste the below link
http://www.youtube.com/watch?v=xnguqsMQmg4

Kell

Neurosurgeon Day

So, today is the day we have been waiting for! Everything exceeded my expectations! They weren't really set that high, so I was pleasently surprised when the "wait and sees" became a "let's get this done." I am so used to the doctor that treats me as "every other patient," and today I had a man who really wanted to know about Alex's life. I think all doctors can use this lesson: Treat each patient as a unique individual who has needs like no other. Use your expertise and experience to your advantage, but take into account the individual at hand. As a teacher, I don't step into my classroom and teach every kid the same. Why would a doctor walk in to an exam room and treat all patients the same. If I had a dollar for each time "most kids" started a sentence...I'd be that billionaire that I want to be so freak'n bad!

So here is the break down:

Tethered Spine: Alex does in fact have a tethered spinal cord. If you were to follow your spinal cord down it would stop in a cone shape around the small of your back. This area houses a host of a nerves that serve as a signal station to your lower body. From there you have a "thread" like structure that extends down towards your bottom and flows freely in your spinal fluid. Alex's "thread" is extra thick and has pulled his spinal cord down further than your average spinal cord would go. This "thread" does not flow freely, but is anchored at the bottom. It has caused his constipation, inability to walk, and some pretty decent pain. In two weeks we will go to Cook's where Alex will have surgery on the "thread" area. (I keep quoting thread because that is not the real term for it, but is how they refer to it). The surgery will require cutting out a small amount of bone and muscle to reach the thread. They will then cut out a small amount (about a centimeter) of the thread. This will make the lower thread fall down and waste a way, and the upper thread to flow freely like it should. He will be hospitalized for 2 full days to make sure that there is no bleeding or leakage of spinal fluid. If all is good, we can go home. We just cannot submerge him in water for a month...hello spunge baths. Right now the surgery is set for Sept. 22nd, but we might change that to the follow week due to some insurance reasons.

It will possibly correct his digestive and constipation issues, as well as, his walking. It will not change anything from his lower back, up. So this surgery cannot affect his speech or brain development in any way. However, we are on to something here! I am cautious about immediate results in his walking, but I know that with some physical therapy and extra hard "Alex" work we will get there.

ENT: As far as the ENT stuff, we discussed his problems with the neurosurgeon and asked his opinion. He suggest a new doctor, Doctor Palmer, and we have an appointment on Tuesday of next week. He thinks that Alex has vertigo. He would want the doctor too take a deeper look into his ears and the bones that surround the area for obstructions or reasons for an imbalance in his vestibular system. He also thinks that Alex needs his tonsils out because they are touching at all times. He said that today his tonsils were "Kissing" and that was probably a place to start looking in regards to all the infections.

So, I feel like we are on to something here. I am happy with the findings, and I am ready to take this stuff on. Another step closer! Thanks for all the calls and emails this week. We appreciate all your support for our little guy. He is happy as ever, and unsuspecting of everything that is about to happen. Sorry in advance Alex!! We have a big journey ahead of us, and are thankful for the many people that are helping us along the way. We appreciate all of you! I am thankful to God for each moment he stands with Alex and my family, and I pray that he is standing with each and every one of you each step of your journey too.

This week...

I have recently figured out that I love to use ellipses and exclamation marks. That is in no way the point of today's blog, but I need to stop my usage of these two things.

Anyhoo, a brief update on Alex's story.

I am changing ENTs. We are pretty unhappy with the way this guy is treating Alex's infections in his neck. We went back a week ago Friday because Alex had an ear infection. How you get an ear infection with tubes in and while taking antibiotics for your swollen lymph nodes beats me, but so it is. When he went in with Matt, they also, GLORY HALLELUJAH, had the MRI. However, the ENT said that he had a "pretty good shot" of the neck area, and from "what he could see" there was nothing indicating a branchial cleft cyst. I do love that fancy doctorish use of words there...seriously. Those were his exact words. Followed closely by..."Let's wait and see what happens with his lymph nodes and go from there!" I am tired of waiting Bub..so we are out like sauerkraut.

I am waiting; however, until this Wednesday's neurosurgeon appointment before making an appointment with the new guy that was recommended as an ENT. I want to see what the neurosurgeon can do for me because I might be able to hit it all at the same time.

I will keep you up to speed after Wednesday's appointment. It is a biggie! Finally, September 8th is here. Woo Hoo!