What's new in the Hunt World

Remember when Christmas seemed like an eternity away. Each night you would count the days on your felt Christmas tree with the 25 days of Christmas pockets. We had candy in ours, and I sure did love to eat that candy each day. We could have a little special something each day to tide us over for Christmas morning. I remember not being able to go to sleep for hours on Christmas Eve, only to wake up hour upon hour thinking it was time to head downstairs to all the presents. Once it was really time to go (probably 4 in the morning) the living room would be blocked off by towels so we couldn't see in until mom and dad told us we could go find what Santa brought us.

Even though my kids are a bit too young to get that crazy about Christmas, there is still something so exciting to them both. Alex mostly loves the Christmas ornaments, tissue paper in the packages, and the Christmas lights. Elle is enamored with Santa, the lights, the presents, the ornaments, the...everything. She is excited, but has not yet grasped the concept of it all. This is the year that will start it all. This is the year that will have her so excited for next year. I think Alex's has another year until it sinks in!

During this Christmas break, we are really hitting Alex hard with his therapy. My OT, PT, head lady, and nutritionist are coming out this week. They are going to really work on some new tactics for Alex. One of them has already started and I am very excited about it. If you go back to the picture up top, Alex has on headphones. These headphones are not your average, ordinary listening device. They have a bone conductor at the top of his head too. There is a therapy mix that is played for him and it allows the vibrations to not only go through his ear normally, but helps bypass the eardrum all together. It goes directly to the cerebellum and into his cerebral fluid. The vibrations allow the sound to bounce around in his brain helping fire up some of the nerve endings that are a bit slower. I am pretty sure that explanation is close to the real one...if that makes no sense try out this website to fill ya in: http://www.allthingswell.com/tlpbone.cfm

The interesting part about Alex and his therapy is that he sits still for 20-30 minutes at a time listening and thinking. Alex is not one who just sits around. He tends to be on-the-go at all times until he gets so sleepy he just crashes. It was odd to see him sit so still, and to see this look of complete consentration on his face. When we switched from lullaby music to trombones and trumpets, he laughed uncontrollably but still stayed focused and still. I am very curious to see what he does with this therapy.

So far the biggest change has been Alex's ability to wave. It is sort of an awkward wave, but he will do it with both hands and on command. This is one of the first things that Alex has done when asked. We have to really get excited and show him how to do it, but he will respond to it. It has only been a week, but I like the progress.

I am going to post a video tomorrow of him walking and waving. Many of you have not seen what Alex can do, but rather just what I have told you. I think you will like to see him in motion!!

Let's move on to Elle! She is starting to really pick up with her speech. It is a bit slower than the other 2 year olds, but overall we are starting to catch up. Her humor is starting to show as well. She is a pretty silly little girl. Everything has to be two even if it is ten. She has started to let me put her hair in a ponytail, or as she says "Two of them." Pigtails it is. Once I put her hair in pigtails the other day she told me "That's better mommy." She mistook a hula dancer for Jesus, and proceeds to tote him around all day hugging him and calling him "My Jesus!" Her favorite things to say is "I can do it myself," "I don't like it," her numbers up to 10, the ABC's, and Jingle Bells. I put some pictures of her up there too, so that you can take a look at how darn cute she is getting too. Check out that hair! Crazy!

Happy Holidays to your families! We hope that they are filled with joy, good cheer, love, and faith. We thank God for His healing hands, His love, and His guidance. Christmas is a time for remembering what's important in life. So while you are running around shopping for gifts, figuring out Christmas plans with your families, stressing over life's little issues; remember to thank that big guy and His son! This is why we are here in the first place! Merry Christmas!

Some new things worth a mention!

It has been a while since the last installment of The Twincident. We have been busy, hectic, crazy, and having a great time with it all. Matt has been working most of his weeks in Arkansas or Missouri, and we are pushing through with lots of phone conversations and emails. Elle likes to hold the phone and breath into it while occasionally saying "Hi Daddy." I think we need to get some Skype around here!!

An Alex update:

We are really getting our act together here. I see so many great things with my little man each day. First of all, since the surgery he has gained 3 lbs. He has been at 25 lbs. for six to seven months, and in the two months since his surgery he has gained 3 (if not more) lbs. Our nutritionist comes each month. She weights him and measures him. He just wasn't gaining anything, but now we are pack'n on the pounds! We are proud of him...he is starting to get a bit of a butt!

Alex is also becoming more independent. He is walking the majority of the time! He is still stiff and tends to trip often, but he catches himself and controls himself much better. There is a confidence that wasn't there before that is amazing. He still has a few run-ins with the tables and floor resulting in some huge goose-eggs, but we are leaps and bounds from where we were.

Alex is also starting to pat his legs and the table, move his wrists side to side, and make different inflictions with his voice. No actually consonants or vowels besides the 'a' or 'e,' but we are starting to hear some progress.

One of the best things is that Alex is eating Mac'n Cheese, Spaghetti-o's, french fries, and other types of solid foods. We are easing him into it, but his eating is much better.

I would have to say the surgery has been a success!!!

An Elle update:

This is one little spit-fire if I have seen one. She is goofy...self-proclaimed "Silly," and she is such a girl.

The other day at school, the kids went to Chapel. All the kids attend this portion of school at the same time, and Elle decided to walk around all the kids sitting on the floor. When she got to the front, she put her hands behind her back and told everyone "I'm Elle" and sat down.

She is equal parts dramatic, crazy, high-maintenance, and sweet. There are so many times she plays with my hair, hugs me like crazy, or gives big kisses. She is a teeny thing with a crazy afro head of hair, and she sure does love her daddy! She might be a shy one at first, but give her a second to warm up and she will be a one act show.

Her current favorite things to say are "I silly," "I want to do it," "I'm Elle," and "Sure." Sure seems to be the answer for anything now-a-days. If I ask her to sing, she tells me her ABC's or Twinkle, Twinkle Little Star, or she tells me her numbers 1-10. She loves to fall on purpose and say "I fall down" over and over again. My personal favorite is her laugh! She giggles so loud....it's infectious. We could not go a moment with out Mickey Mouse and Santa right now, and she loves a bubble bath! Potty training is next...I need some luck with that!

A Matt Update:

Matt is in and around Arkansas most of the time. He did get to stay with me this week which was wonderful, but he is back to Missouri next week. He loves the job, but hates his time away from us. We keep things ticking here though, and we are so proud of his hard work and dedication to us! We love you daddy!

A Kelly Update:

Still kick'n :)

The Special Few

There have been a few times in the last year where I have realized that admist the violence, hate, ignorance, and self-absorbance that we see on TV or witness in public places, there are some really great moments where you truly see the workings of God.

Take for example, the parent homework I had my students do one day. They were to ask their parents three simple questions. Who influenced you when you were young, did they disappoint you or fulfill you, and who influences you now? I had an overwhelming amount of responses that had God at the top of their lists. It was so refreshing to see that our parents are instilling the love, faith, and admiration for God and talking about it with their kids. I exepcted to see this response on a few kid's homework, but to see it so often and with such conviction was inspiring.

In a more personal experience, I have found that prayers, kindness, and encouragement were bestowed upon my family by my loved ones, friends, and many people who know us through a friend or relative. People that don't even know us have wished healing, peace, strength, and love for my family. We recieved a prayer bear from the ladies of Cook Children's, along with a book and prayers in their nightly service. We were given dinner from our relatives and friends during the week of Alex's surgery. My co-workers surprised me with the most amazing gift that truly left me speechless and in awe of their generosity. I have had friends who are going through their own drama, stop their lives to offer me help, and continue to check up on us even when their lives are in chaos (thank you Carly!). Today, I was given two prayer blankets from my sister-in-law's, step-mother-in-law (did you follow that). They were prayed on by her friends at her church, and given to both my Alex and Elle along with rosaries and prayers. How lucky can a family get? My grandmother in Michigan, has a quilt that is being made from her church where each woman has hand sewn a patch together and prayed on each knot tied. I can't wait to see what these women have done!

I say screw the "hate" that people see all around them. It has taken a few months of turmoil to realize that there is so much good around us. It is amazing how you can truly see the light of God through the hardest and also the simplest of times. He is here with us. He guides us, walks with us, aids us, and catches us when we fall. He is here in these people. In you and me! Just take a moment to look around you today or tomorrow, and you will see him the faces of those around you who are good, honest, hardworking, and kind. He is in us too, and we need to pay it forward one simple prayer, favor, and kind word at a time.

Time, where does it go?

We have been a busy family with, well, just life. I haven't had an update in awhile to keep everyone up to date with my Al. He is getting stronger day by day, and we are seeing some pretty fantastic things with the little guy. He wants to walk non-stop. It is pretty stiff still, but he has better control of himself when he gets off balance. He keeps walking out of his classroom at school, and frightening the teachers with his disappearing act. I remember that they called Elle Houdini when she was in the one year old class because she would frequently leave the classroom. Now it is Alex's turn to try that trick out. His voice is a bit different, and he is trying out inflections in his sounds. There are still no distinct letters though. We are waiting for that first consonant. Sooner or later I guess. He is still eating his pureed foods, and that hasn't been getting much better. He has been a bit under the weather though, and when that happens eating goes right out the window. Hopefully, we can get that back up and running soon. He has been a bit sick the past week with some weird symptoms. Hopefully we will fix it so I don't get a sick call from school tomorrow.

Elle on the other hand has just blossomed into a complete toddler. She is sassy, demanding, and cute as anything. She sings all the time and I often find her hiding under or behind things when she potties. She just won't use that potty consistently yet. She does like when her princess chair sings at her when she potties in it. I give her M&M's too...but I guess it is not enough because she could care less about using it all the time. Her favorite person right now is either her daddy or her G-daddy (my dad). Each morning she asks for them, and when I get her out of bed she tells me "No, I want Daddy." When daddy is in Arkansas, she says "No, I want G-daddy." It proves for a very stressful morning. She cries until we go into the living room to see Miss Piggy on TV. She loves the marriage scene with Kermie on Muppet's take Manhattan. So old, but so good!

Just a little Hunt update. Anyone willing to take me on vacation. I need one!!

Recovered

We are definitely getting back to normal. It has been a long hall, and my poor Alex is starting to feel like himself again. I am so thankful for this time to be over. It was a tough one.

I am starting to see a looseness in Alex that wasn't there before. There seems to be an overall comfort in his movement and mobility. There is nothing shocking or immediate in his recovery, but there is a calm presence that seems to consume him that wasn't there before. It is probably too subtle for most to notice, but I see it!

I am just happy the past few weeks have been put behind us. We are so thankful for Alex taking this whole experience like a trooper! He has been one steadfast, amazing little boy! I am 100% positive that he is stronger than most people I know...including me!

Elle has been a great sister in all of this. She has told her teachers that Alex is "at home with a boo-boo," and loves to touch his new hair-do (notice the shaved head). I have realized that she is going to be one handful when the therapist, that visits Alex, told me that Elle told her teachers that she would not get off the trampaline. When told that she must, she huffed and went to sit at the FRONT of the line. When told she had to move to the back, she huffed again and at least did what she was told! What a diva!

On another note, my Matt has been working hard in his new job. He is gone from Tuesday to Friday most weeks working in and around Arkansas. I know that he misses us as he sits in hotels and travels the roads, but we are proud of him. He is happy in his new job even though it means being away from us. We tell daddy that we love him every night, and I think that just helps the long roads ahead seem worth it. It has been a trial for us both, but we are stronger because of it. I ask that you keep Matt in your prayers for safe travel! He drives everywhere he goes, and I worry :)

Thanks for keeping up with us! We have a crazy story!

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!

Nothing Yet

To continue making me crazy to the point I would like to act like Elle during her most dramatic tantrums, my ENT did not have a copy of Alex's MRI to review on the August 19th when he came back from, what better have been, a damned good vacation.

I called the nurse the day before to leave a friendly reminder to give me a call with a plan of action only to find out that they never got his MRI film from Cook's. I was instructed to call Cook's to figure out what happened. Well, apparently the main Fort Worth office does not keep the Northeast facilities records where Alex had his MRI. No one cared to forward on the signed medical release forms or to call the ENT to notify him that the records would not be released. On the flip side, no one at the ENT cared to check when 3 weeks went by and there were no MRI films on the doc's desk. Ahhh, thank you, thank you so much for having a valid care for my son's health.

So I had to fill out another medical release form with the Northeast office, and the reports should be there at the start of this week. Let's hope!

In the meantime, I have found another ENT that has great reviews with special needs kids. I will give my current doctor one last shot by reading the MRI film, and if I am not satisfied with his plan of action...sianara.

I just wanted to give an Alex update because I have had many people ask me how August 19th went, and well...it hasn't...went.

Arkansas

Today is a new day!

Matt accepted a job a few weeks back, and it is finally a reality! He is now an account manager of some asphalt...blah, blah, yaddi, yada, ya, something or other for the entire state of Arkansas. This is the industry he has been in for the last upteen years, and we have finally had a break.

Two years ago, his seemingly perfect job had a bankruptcy problem, and he was sent back to the asphalt trenches. He has been hardworking and has been persistent, and it has finally paid off. Starting today, Matt is now an employee of Delta.

We are so happy because it means a real, future for our family and our kids. The only slight downfall of this job is that he is the manager for the entire state of Arkansas. Yes, if you are reading into this right, we will have to move. For the next year, Matt will be traveling back and forth from Arkansas to Texas. His home office is our friendly guest bedroom; however, once he settles in to those Arkansas ways, we will be packing up and heading out. Goodbye Texas, Hello Arkansas summer 2011. Get your fill of the Hunt family folks, because we are going to be residing somewhere within the great state of Arkansas in the next year!

We know that this adds some stress to Alex' story, but Matt's new boss is a wonderful man who puts family first. He will be able to be around for all our little man's upcoming, whatevers, that he will need! (Sidenote: no word yet on the direction we are going to take with Alex.) I feel that this is exactly where we need to be even though I don't want to leave our families for the life of me.

Matt, I am your biggest fan! I know that you can do this, and I know that it is your time to shine. I love you and I believe in you! Your babies and I are ready to take this journey. You are our hero!

A walking we will go...

Today was a pretty cool day. I am not sure if it is the antibiotics in my Alex's system or some kind of adrenaline rush, but whatever it was, I will take it! He was a walkin-man today. He was pushing away from my hand and taking control of his movement. He was balancing great and catching himself with his feet before he even had a chance to fall over. He even fell back at one point and put his hands down (which if you read his story is a first in our book). I am so proud of him! Maybe he just knows that he is about to go back to school tomorrow, and he wants to be a big boy:)

Elle on the other hand decided that the allergy bug would bite her today. She woke up sneezing and it just never quit. She was a trooper though! It did not stop her from demanding attention, and playing like a maniac.

As for an Alex update...We have another swollen gland issue. They are back!!! So we had to head to the wonderful Doctor Davidson, our pediatrician, for some antibiotics. I would have called my ENT, but he is still on vacay...it better be a good one! I hope to be the first to leave a message on the 19th to see what the reports say, and we will fill you in from there on our plan of action.

I have been contacted by Scottish Rite too. We are in the process of filling out a ton of paper work, and then they will get back to me as well.

On a sad note....I have to go back to work tomorrow. Boo! On a happy note, Matt starts his new job on Tuesday. I will fill in details on my next blogging.

Seriously??

So here I am waiting all week for the MRI images to go to my ENT so that he can read them and decide what our plan of action will be. Getting antsy, I decided to call today to find out if the images made it to his office yet. Well, apparently my ENT will be out of the office until August 19th because he is on vacation. So, even if the images are on his desk, I cannot find out nor plan anything until he gets back. Could they be any more difficult?? I think I need a vacation more than him!

...and the wait continues!

As the summer is coming to a close, we are starting to make appointments and arrangements with our doctors to get the very large ball to a slow and not quite so steady roll. I think the ball is flat! We push and push, yet we seem to get nowhere fast. Here is what the last few weeks have delivered.

1. Another trip to the ENT because Alex's glands flared up again. They are going to get the radiology records for Alex's brain MRI to see if it shows far enough down into his throat. If not, we are going to do another MRI of his throat to get a good idea if it is a Branchial cleft cyst or a lymph node that doesn't want to behave. The records were sent for on Friday of last week, but have not yet been received to review. I am hoping that we will hear something today or tomorrow.

2. I received more detailed paperwork from Scottish Rite to fill out. I am sending that back out today, and hopefully once they receive it we can get in!

3. Neurosurgeon appointment at Cook's on September 8th.

Even though we have more information, we are still in about the same place as we were a few weeks ago. Hopefully we can get this flat ball aired up and ready to roll. I feel that it will start to pick up speed right around next Monday when I have to go back to work. Joy?!?!

On a great note, the kids are getting ready to head back to CLC. I love it there and they definitely love my kids! Can't wait to see all our buddies and to make some new ones. Hello 2 year olds!

The zoo, the zoo, we are going to the zoo

Alex and Elle’s Big Adventure…sorry for the plagiarism Pee-Wee! The wagon wheels turned in time to the cobble stone walkway as Alex and Elle and their best friend, Grady, hit the Fort Worth Zoo. With mommies in tow and a Noni too, we saw the amazing animals at their best. First stop was the flamingos. Elle clapped and squealed when she saw her feathery friends. Alex checked out the wagon wheels, and Grady ate his Cheerios. So we were off to see the Elephants and Giraffes. “Hi, Elephant,” Elle screamed over and over again while the Elephant shot dirt on his back with his big trunk. Grady still ate Cheerios, and Alex was forced to take his attention off the wheel to see the elephant too. We saw monkeys and zebras on our way to the MOLA building. We were almost eaten by a huge alligator and took our picture with a Cobra, but on our way out, mommy pinched Alex’s fingers in the door. We had a short time-out to hug and hug until the tears stopped. It was about that time when we stopped to pet the little goats, cows, and chickens in the petting zoo. After furious scrubbing at the sink with soap and HOT water, we headed home to take a long nap! Whew, we had fun at the zoo!

The ENT Appointment

In Alex's story, I told you that we were going to the ENT to see if the swollen gland on his neck was infact a Branchial Cleft Cyst. Unfortunately, it was no longer swollen because the pediatrician put us on antibiotics to reduce the swelling. Since Alex has some swollen glands in his throat, the ENT couldn't decifer if it was a cyst or just swollen glands. So, the plan of action is:

1. Wait until the next time it swells up (usually once every 4 to 5 weeks).
2. Do a CT scan or biopsy of the cyst, or whatever it might be, when it is swollen.
3. Hopefully cut that sucker out!! :)

Yes, more waiting. However, it makes sense to wait on this one until it gets big again so we can easily get to the bottom of this mystery!

On another note, I wanted to sincerely thank each and every one of you who have sent emails and notes about Alex. I have had some funny, heartwarming, and very helpful words sent our way. We are blessed to have so many people in our lives that really and truly care. I have seen the way our community of friends has come together in the past to help people in need, and I am truly thankful that I can call you my friends!

A little Diddy...about my Elle

So I have this crazy little lady under my roof. She spend the evening at her "Uncle" Nick's birthday party where she took everyone for a turn on the "Ring around the Rosie" train. Even Matt's grandparents were told to fall down as she sang the song with all her might. When they didn't actually fall, she would tell them to sit down in her not so distinguishable babble. It was time to go home once she stuck her butt up in the air while she poured her teapot out. She ended the night with a muah - kiss to everyone including the people she didn't know. What a character!

Alex's Story

As many of you know, Alex is not a “normal” 2 years old. As many say, “he is a boy,” and “he was premature,” but it goes beyond those basic statements. We hoped that it would be that simple, but as the months have passed Alex has yet to walk completely on his own or talk. He can walk, but he will fall down without support of a hand or a target to walk to. Falling is a hard one for Alex because, unlike most kids, Alex lacks balance. He does not have the innate ability to fall on his bottom or use his hands to catch him. He will literally fall like a tree would, and has slammed his head against our floors a few too many times. We are teaching him how to fall and how to walk with lots of physical therapy and occupational therapy, but it is definitely something that is being taught to Alex rather than him just knowing it. He is coming leaps and bounds, but he still is a long way from getting it all worked out. So if you happen to be next to him when he ventures out to walk on his own…stand behind him or keep a close hand near him to catch him when he falls.

Our neurologist at Cook’s has complete faith that he will walk, but it might still be a year down the road. The other big concern is his lack of communication. Alex grunts and makes many unidentifiable sounds. He has yet to utter those simple “da” or “ma” sounds that many 8 month olds are developing. This caused the doctors a bit more worry. So Alex had tubes put in his ears. He had a temporary hearing loss in his right ear, and it was corrected by tubes. Poor Alex had a million ear infections, and with the tubes he hasn’t had one. We hoped that it would improve his hearing as well. The hearing loss was corrected with the tubes, and we hoped it would open up his vestibular system and allow him to not only hear the sounds well but speak them too. It didn’t. So in February, Alex had a chromosomal microarray analysis (CMA) genetic test. This tested for every possible type of genetic disorder. The main one we were looking for was a disease called Angelman’s. This is a form of autism, often called the laughing disease. He had many of the symptoms for Angelman’s, as he has many of the symptoms for many disorders and diseases, so we thought we would start there. The testing took 4 months to process and the wait was horrendous, but we found out around the first of April that the genetic testing was normal! That was a huge relief for Matt and me because many of those genetic disabilities are greatly increased for any future children.

Since the testing came back normal, our neurologist decided to let Alex continue to grow until our visit in one year. I really like that he is not so quick to label Alex, and he is just allowing him to grow and learn before we start to throw down labels on him. Our occupational therapist says that many of her kids have been diagnosed with CP or autism, and 2 or 3 years down the road they find out that they do not have the disease. They were just late developers. I like that the doctors are not so quick to label, but I wish they could be a bit quicker about testing him to rule out a label!

So that takes us to this summer. We have physical therapy, occupational therapy, speech therapy, and a nutritionist (have you seen how skinny that boy is!) coming twice a month each. They have become part of our family I feel. They are always there. Matt hates that his evenings are interrupted by them so often, but I love when they come. They love Alex. As many of you know too, Alex is so easy going and light-hearted. He loves to laugh, and he is rarely upset or discouraged. He works so hard and tries so hard, and I know this is why he will be just fine in the future! He has a determination to succeed far bigger than most people, and he is only 2. Our therapists love to work with him because he loves the work out they give him. He thinks it is hilarious! Many of their patients cry and fight the therapy, but not Alex. He loves it! They give me so much advice and suggestions beyond their therapy role. They are all veterans of the ECI program (Early Childhood Intervention), and they have been with him since he was 6 months. They know what they are talking about, and I sometimes I think they tend to know more than the doctors! They were the ones who have shown me how to push the doctors into getting what I want and what Alex needs.

That brings us to the past three weeks. Alex has been constipated since birth; I know too much information. The first time I went to the gastroenterologist for this, they put him on Miralax (2 tbs. a day). We have done this for a little over a year. If I forgot to give him his meds one day, he went right back to being constipated. When I say constipated, I mean that he won’t have a bowel movement for up to 10 days. When he tries to go, he throws up even though nothing would come out. We would end up having to do suppositories to help him, and we repeat the process each time good ole’ mom or dad forget to give the medicine to him. Sorry Alex! I just felt this was not right! So I called the GI and asked to have him seen again. I was not looking forward to this appointment. All the specialists we see are similar. “We will just wait and see how he progresses.” “Let’s see what this over-the-counter medicine will do.” “How about we monitor this for another 6 months?” I want to pull my hair out! I know that this is not what a normal little boy should be doing at this age, and I wanted something done now. I was short of just bringing him to Cook’s and asking for a full body MRI, when my GI answered my millions of prayers. She listened to my concerns, and here is what happened:
Alex had a blood test that tested for anemia, jaundice, Celiac Disease, and some vitamin deficiencies. All NORMAL!

Two weeks ago, Alex had a rectal biopsy to test for Hirschprung’s Disease, an MRI of his lower back, and a brain MRI (that I scheduled with his neurologist to test for abnormalities in the brain – including CP and an under-developed cerebellum). I was told from the neurologist that if he had to be under anesthetics for anything within the year, that they would tack on the brain MRI so that he wouldn’t have to be put under too many times. These tests would take a few days to a week to come back. I was very nervous, like puke if I thought about it too much, nervous!

While we waited for the testing, Alex got a very big gland on the left side of his throat near his ear. He gets this same swollen glad about once every month and a half. It is accompanied with a fever and usually nothing else. So I went to my regular doctor. Still waiting to hear about the MRI results. He started to think and threw out a new idea. He thinks that Alex has a branchial cleft cyst. In a nut shell, when you are developing in the womb your ear stems sort of roll out to form your throat and other things around there (technically speaking :). Sometimes those do not roll out right, and it leaves a cyst in its path. He thinks that Alex might have this. So we are off to our ENT (great guy…yet one of the “wait and see” doctors) on Friday (tomorrow). If this is in fact what Alex has, he will just have to have a throat splitting procedure to have it removed. I am curious to see if it has any effect on all the other stuff going on…guess I have to ask that question. Cross your fingers we don’t have to “see how the next few months go” to figure it out.

Back to the MRI results! Finally after a few days, I was told the results of these tests. The rectal biopsy is NORMAL! Thank God he doesn’t have Hirschprung’s. Read about it online. The surgery and after surgery process doesn’t seem fun!
MRI of the brain is NORMAL (my scariest one). He does have a swollen or bigger portion in one part of his brain. I was told that it was not pushing on anything or interfering with anything so they consider it normal.

MRI of the lower back…not so normal. Alex has signs of a tethered spinal cord. What does this mean? Hell if I know! If you research it a bit, a tethered spine is usually a symptom of something bigger. It could be anything from cysts or a tumor to an actual disease of your choosing. Think back to the cyst on his throat/ear…could there be a connection? I will be asking that question! So even though I know that he has this, we are still in the dark to what it really means. I do know that it can be painful to walk and move around which explains why Alex seems to have such an incredible high pain tolerance (I mean not even flinching when he gets his shots). If he has only known pain, I guess it seems like a normal way of life.
So what is being done? The test results went to Alex’s neurologist because the spinal cord went outside of my GI’s realm and into neurology. Alex’s neurologist referred us to an amazing (or so they say) neurosurgeon within his department at Cook’s. He specializes in the spine and they feel that he is really the best one to help us from this point. His name is Doctor Roberts…anyone know of him? Unfortunately, we have to wait until Sept. 8th to see him. At least it is better than my initial appointment with the neurologist. It took 7 months to get an appointment (seriously). He will go over the MRI of both the head and spine, and probably do his own testing as well. Surgery seems to be the one way to fix the problem if it needs to be fixed. Again, we really don’t know what the problem is. Ahhh, the wait for answers! Good thing we are patient people. Alex’s neurologist said that it is not going to change anything, and it does not pose an immediate emergency to wait until the 8th of September. So we wait!

Then this week, Alex had a barium rectal enema. Don’t you all wish you had one of those? They were trying to see if there were portions of his lower GI that were messed up, for lack of better words. This too came back normal. Yeah! So many tests…I love it!

In the mean time, we are going to the ENT for the branchial cleft cyst tomorrow. Interested to see how this one goes. We wait until September 8thfor Cook’s, and I also submitted an application with doctor referral to Scottish Rite Hospital. My grandfather and mother’s cousin are Mason in Michigan. Random coincidence, they are meeting with the Master Mason of Detroit AND the Master Mason of Dallas today (Thursday). They are going to help us recommend Alex to the Scottish Rite Hospital along with my doctor recommendation. We are going to this hospital as well, if we get accepted, to get a second opinion and to decide which doctor we want to take care of Alex. Options are good!

So, we are really in the same boat as a few months ago trying to assume what is wrong with Alex, but at least we know a part of the puzzle. I really think that all these things that seem to be so different in him all stem from the same or similar problem. We just have to connect our dots!

Most importantly, Alex is too young to remember this! He has never plateaud, yet always seems to push through and beyond his barriers. They say if he stops progressing, then we have a problem. This has yet to happen, and I know it will not happen. So far the doctors have been optimist that Alex will be just fine after all is said and done. Speech is going to be a tough one to work through, but this too will catch on in time. It won’t magically happen one day like I thought it might, it is a long road ahead that we are very dedicated to pave. One thing that sets Alex apart from so many others like him is his internal drive. He does not stop. He works and works day in and day out. He tries out new things and explores more than most so that he can learn the way that his body will allow him to learn. He might not come to you or seek out your attention. He may not hug you or play with you as Elle might, but he is not doing this because he doesn’t want to. He is trying, but his body is keeping him from carrying through with the task. He wants to be with you and get that attention, but he can’t. He wiggles out of your arms or leaves you because he needs to feel secure and that usually involves him standing up to a table or chair so that he can regain his own security and control.

I think we are on to something and with the help of the neurosurgeon, we might find a light at the end of the tunnel a bit sooner than we thought. We can only hope and continue to pray for him. He will truly be great. I believe it with all my heart that his trial and tribulations this early on in life can only lead to greatness. He has gone through 3 surgeries, numerous procedures, and a ridiculous amount of therapy all with a smile and laugh. He has gone through more in the past 2 years than one might go through their entire life. We still have a long road ahead. If he can get through all of this, there is nothing that can keep him from doing great things. I feel God in my heart and soul, and I know that he is answering our prayers. You just have to look at Alex to know that He is right there with him each step of the way.