The Package Tour

Just to show you how bat shit crazy I am....

Last night I found out about the Package Tour (98 degrees, BSB, and Boys II Men tour). I was so excited and told a friend of mine we were going, no ifs ands or buts. I looked up the tickets, found the date in my city, and was ready for presale in a few days. I was so excited to go to a concert, something so dumb but I really need to get out of the house and be part of mindless things. Really..it's for my sanity.

Then shortly after all my excited a friend reminded me that I will be in Chicago on that date. We are going to Chicago in June for a big meet up with our Trisomy 9 family...it will be like a huge family reunion. This is great and all but I was so excited for a night away from all of this crap that we go through on a daily basis. So what did I do?

I sobbed. What the hell is wrong with me? I couldn't even catch my breath during it all. I'm obviously not of sound body and mind...because seriously I cried over a concert. Obviously the meeting in Chicago is insanely more important than a concert but it's the meaning of it all. Trisomy consumes me. Everything I do or think has something that can be tied back to my son's Trisomy diagnosis.

When is our next surgery? What test results have I not gotten back yet? Who is going to watch Nolan? What are we going to have for dinner (we try to eat Paleo so that Kaleb''s severe GI issues will decrease)? I need to make a list of medicines, questions for any given doctor (reminds me I need to do this for tomorrow's appointment), emergency numbers, etc. What is this bump on Kaleb's body, why is it there, will we be in the hospital soon because of the bump? Does Kaleb feel warm? Does Nolan feel warm...because if so I need to keep him from Kaleb. What do I need to disinfect today? How did Kaleb's poop look today? What day of the week is it so I know what medicines to give? What surgery will I have my son go through with his feet. Will we be going to St. Louis? Do I trust his doctors? What toy should I get Kaleb for birthday/xmas/etc because it has to be therapy related.

January is trying to break us and for now it's winning.

And btw, if you are my friend on FB and go to the concert and then you post photos of the concert. You will probably be un-friended. ;)


What's a Mother to do?

I've been wanting to blog about our recent trip to Shriner's but I really didn't know how to react. I cried for a while and was really upset...so upset I really haven't talked to many people about it. Now I'm ready to tackle this new hurdle just like we have all the other ones....we can do this!

Here's a little history first...
*Kaleb was born with severe foot deformities (shocking...I know)
*his right foot had dislocated bones and was diagnosed with "congenital vertical talus" (CVT)
*his left foot did not have any dislocations but was still very "deformed"
*Kaleb was in serial casting for 6 months to help turn them back the correct way.
*After casting Kaleb had surgery on his right foot where his achilles was cut and a pin was put in through a minor incision to hold bones together. This was when he was 6 months old. This was to fix his CVT.
*he was given ankle braces after the surgery but told to only wear them when he began weight bearing (almost a year later).
*Kaleb had another surgery on both legs to lengthen his tendons to release his feet down.
*since his tendon lengthening his feet have gotten a lot better but his left foot has been the worst so when he stands up or cruises along something he is walking on the inside of his leg/ankle. His right foot (the one with CVT) has been doing pretty well.

So we go to Shriner's for a second opinion on his left foot to see if anything could be done to correct his problem with it. Kaleb had x-rays done and then we met with their Ortho doctor. He showed us the x-ray of his feet and damn...it looked like his x-rays from when he was born. His left foot's bones are actually in line and doing really well (despite our concerns and his PT's concerns). Then we look at the right foot which was supposed to have been repaired when he was 6 months old. He says, "his right foot still has CVT".

I told him, "but that's the foot that he had surgery on". I thought maybe they got the feet switched around on the x-ray..but nope. It was clear as day. His bones in his right foot were all jumbled, like a tangled mess of developing bones. This isn't something that can just be fixed with casting or braces or therapy. It has to be fixed surgically...again. It's not an optional surgery.

I was devastated. As soon as the nurses and doctor left the room I just cried...trying my hardest to keep the tears in because I really hate doctors seeing me break down. I couldn't wait to get in the car because I needed to cry, I had to cry.

Now what do we do? The doctor told us there are two types of surgeries to fix CVT. One of them is new and minimally invasive which is what Kaleb had done at first. This was created by a doctor in St. Louis who is now a pioneer in the world of CVT and travels all around the world to teach other orthos how to do this surgery. The other surgery is a major surgery requiring two large incisions to put all his bones and tendons back together with several pins and around 4 months of being in casts. We agreed to do the surgery and were given paper work so we could get clearance from FIVE of Kaleb's specialists (to allow him to have surgery given his other systems are in good shape).

I left Shriner's planning out my week and how I was going to go to five different doctor's offices and make sure they fax their paperwork back to Shriners, along with planning a birthday party and many other doctor appointments and testing.

Then I posted in a  CVT group on FB about what happened. As I was talking with parents on there I found out that our Ortho did not follow the exact steps for this newer minimally invasive surgery. Children are supposed to be put into braces with a bar across for 23 hours a day for up to 2 years. This was never done.

I trusted our Ortho and never researched what he was telling me when Kaleb was 6 months old because I had no reason to not believe him. Why would you follow a new practice but not complete the steps? I also talked with others who's children's first surgery did not work either and most of them traveled to St. Louis to be worked on by the pioneer of this new technique. And to my surprise, he is part of that FB group and he has reached out to me about reviewing Kaleb's x-rays and treating him.

What would that mean? Multiple trips to St. Louis and years with a bar between his feet.

I still have not decided what we will do. I still haven't even given Kaleb's doctors their paperwork for clearance. Either way Kaleb's development will be hurt because of constant casting or bracing. He's been doing so well...standing and cruising along couches and benches.

It's all so scary, my son will be able to walk and now I have to make the best decision to make that as easy as possible for him because...lets be honest...he already has factors working against him in order to walk. If we do the major surgery he will have large incisions and we now know that Kaleb develops larges keloids on his incisions (think of scar tissue bubbling up...that's what it looks like). And he already has these keloids down his stomach and on both of his legs.

What's a mother to do?


Adenosine Challenge ::rant::

This morning was Kaleb's "Adenosine Challenge" which happened in the Hybrid Cath Lab at our children's hospital. Everything went really well, no hitches...perfect. He went right to sleep and only needed to be put to sleep with the mask because it was such a quick test.

Everything was perfect, even down to the fact that they have basically been able to rule out Wolff Parkinson White syndrome. It's not 100% but enough to proceed with further neuro testing and possible medications for seizures.

I'd like to think everything is perfect...but it's not. I'm so worn down and tired of it all. Trisomy is hard...it affects everything and changes your life completely. I'm sick of not having any answers and having doctors tell me they have absolutely no idea what is going on. I'm really sick of every test coming back negative. I hate giving doctors Kaleb's medical history and them asking "well what is his blood disorder called" and I really hate having to tell them, "I don't know because the doctors have never seen it before". I'm especially upset at doctors writing in their notes concerns for something and not talking to us about it (apparently TWO cardiologists wrote in their notes that they had concerns for WPW well over a year ago but never talked to us about this). I'm done telling people that I'm glad a test was negative, or that something wrong wasn't found.

Source: oprah.com via La Isha on Pinterest

If you want me to be honest, I wanted my son to have WPW and I don't really care if that upsets you or shocks people. I'm tired of not having answers. WPW is at least able to be completely fixed in a relatively easy way. The alternative for Kaleb...is not so easy. Seizures are difficult, you never know when they are going to hit..constantly on your toes. Often they start out as simple seizures and progress into worse ones over time. There is no cure for this, only medications. Which, for the medications to work, Kaleb's systems have to be in tip top shape...and lets be honest, they aren't.

I'm tired of hearing "it's going to be okay", "everything happens for a reason", etc. I'm tired of certain people in our lives not being there for us...or hell...not even calling us after something big happens to Kaleb to check on him. I am so tired of it. I'm sick of endless medical bills, doctors appointments, hospitalizations, therapies, etc etc etc. Please don't think if you have said the above things to us that we specifically are upset with you, we aren't, I mean honestly...what else do you say to someone in this situation? "Sucks to be you!"?? 

Please, go ahead and judge me, try to tell me what I'm doing is wrong and I need to do something different, be my guest, but please know that does not help our situation or Kaleb at all.

Source: weheartit.com via Heidi on Pinterest

I am mad, angry, frustrated, sad, and pissed off FOR my son. He deserves the best...the best medical care, the best people in his life, the best answers, the best everything and when he doesn't get that...I'm not happy. Of course I'm not going to give up on finding answers, but seriously...put yourself in my shoes, or my husband's shoes. It's not easy...  

We just want answers and for our boy to be okay. 

We may have a lot of "wants" but please know that we are entirely aware of the wonderful things we have. We have a happy family with lots of laughs and fun times. We are a very close family, the 4 of us. We are happy every single day and thankful for all of the wonderful things in our life. So please don't think I'm being ungrateful. I just don't want my son to have to continue to go through difficult and risky testing to get another negative or "normal" result. At what point do you stop and say enough is enough? ::big sigh::

And with that I put on my happy face and continue through my day as if everything is perfect. This year I will focus on being a better person, not letting people or circumstances (whom we cannot control) bother me so much, and be grateful for the friends and family that I do have in my life.