A rant (accordingly)

Lately my tolerance for other people has been much lower than what it normally is. Maybe it's because I'm working in the rich people version of Walmart...or maybe it's because I've joined a few more online support groups and have realized how unbelievably clueless people are about their children's medical issues.
Even before Spencer was born, the second I found out about his foot I became engrossed in research. I could spout off facts about random and obscure genetic disorders by the hundreds. This knowledge has expanded as Spencer's list of anamolies has grown. It's gotten so bad that I often try to diagnose children in the waiting room at our appointments. Since we have a working diagnosis of sorts of Say Barber Biesecker Simpson-Young Ohdo syndrome, I have probably read everything on the internet about it and have made contact with three families who live in Europe.
I do this because I love my son. I want to be so informed about anything that could potentially help him in the future, that I'm constantly looking for things that can help him in anyway. I do it because it's my responsibility as a parent. I'm not depending on doctors to point me in the right direction. I will a medical opinion, but in the end if I feel something is right I'm going for it.
I've also learned, ask and yea shall receive....So far we've gotten a suction machine (that has saved us at least one ambulance ride) and countless other medical supplies that makes my job easier. I also asked our high risk clinic doc for an allergy consult. I was off my game that day and took her advice when she said to wait. I changed my mind and asked our peds to write us one, and he was shocked Spencer hadn't been tested (TRUST YOUR GUT AND DON'T BACK DOWN). I'm pretty sure our high risk doctor hates me because I come in every appointment with a giant list of things to ask about...but I don't care. My son is one of her hundreds of cases, so it's my job, not her job, to keep tabs on him. For example, I wouldn't know my son has a whole in his heart if I wouldn't have asked.
Which brings me to my next point...Quit whining about the small stuff. Yeah, sometimes life with a medically fragile child just sucks. Life would be grand if Spencer woke up in the morning spouting off his ABCs, running around the apartment, and eating everything in sight. But you know what, it's not going to happen. It might not ever happen and I'm ok with that. My life is amazing because of him. He is not a burden nor never will be one. While there is so much Spencer isn't doing, there is so much he is doing! Quit fretting the small shit and live in the moment. We live for today, but hope for tomorrow, and that's all you can do.
We mourn. Of course we mourn the child that we thought we would have. But we got something so much better! If you do it right, a child with special needs will take you from that simple, shallow, weak person you were, and make you empowered, complex, and strong. I thought I was tough shit before I had Spencer, and now I realize I was weak. I have survived a parent's worst nightmare and we have thrived. It hasn't been all hearts and flowers, but in the end we have made it and are moving forward stronger than ever.
Point number two...do your research. How can you be empowered when you don't know what the hell is going on with your kid? Google is awesome, use it. Ask questions...call doctors in the middle of the night. It's your kid and you know them better than anyone. It is your responsibility as their advocate, their voice, to fight for them. If one person says it can't be done, always ask someone else. And for Christsake...find a good pediatrician. I know if high risk clinic won't write a consult, Dr. Boling will do it for me. All I have to do is ask. If your peds doesn't say how great your kid is doing, and instead points out only the negatives, it's time to find a new peds.
I'm starting to run out of angst. I feel much better now.

The Tubie Version of a Play Date

Spencer had a great day today:) Well, afternoon. We started off the morning by waking up far too early and going to see his hand doctor. Everything looks good except his thumbs are still ridiculously long (duh) and he is lacking some bones in his wrist. Those will come with time, according to the good doctor. His range of motion is a lot better. Recommendation is to keep doing what we are doing (nothing) and see him again in a year.
We then had a weird hybrid play date in between a fellow tubie's appointments. We have become fast friends with a couple from Lexington and their little one. Their little one played on the playground, while Spencer demanded to be cuddled by mom. After that we went to pick up his new ear molds (which came in amazingly fast).
After he got a nap in, Spencer was in a great mood. He was really talkative today and just really happy. Lately he's been super grumpy because he has a crap ton of teeth coming in all at once.
I've linked up with some parents to try to get WIC and Medicade changed so where it becomes more tubie and blended diet friendly. Essentially there are a ton of kids like Spencer who don't really fit in with the WIC system. Medicade also doesn't support blended diets. While they will shell out thousands of dollars a year for formula, they won't pay for a blender so parents can feed their tubies normal foods.

Quinpod

I was looking over old blog posts and realized there were a couple of things I haven't filled in...
Spencer will probably still need glasses. We'll probably get a script for them when they do an eye exam during his ptosis repair. A few months after that we'll probably have to get another pair because his eyes will change after he heals. Did I mention we have three eye doctors?

Spencer is now getting up on all fours. He surprised himself during PT the other day by transitioning from sitting to all fours. He is starting to transition to all fours all the time now, occasionally using his head as another support.

At his 15 month check up and shots, Spencer was in the 5-10th percentile for weight, 30th for height, 90th for head. We also got a referral for a new peds. I called the office and figured out what I needed to have sent, etc. I'm thinking of requesting a copy of his medical records for myself as well to look over. He has so many medical things different about him, I'm sure I've forgotten to make note of some of them. I realize he is going to have a hell of a time explaining his medical history to doctors when he grows up.

Jimmy and I are back together. So far so good. It's not perfect yet, but we are working on it. We are both excited to move on with our lives and to start fresh in Ashland.

Quick Update

So we went to our cardio appointment. We were told let's wait and see. They are optimistic that it might close on it's own, or at least enough to not give him problems. If it hasn't closed by the time he is 5 or 6, they will go in and do it. We don't go back to cardio for a year!

I called his fancy eye doctor because Spencer has had gunky eye for a few days now. Hopefully it clears up before the appointment, but we can't be too careful since he still has tubes in his tear ducts. I hope it's just a cold, otherwise he might have to have another crazy eye surgery.

You Said the Rain's the Rain

So we now have a working diagnosis for Spencer...Ohdo Syndrome. It fits. He has the eye stuff, and the facial stuff, the delays, etc. It suits him. The thing I'm devastated about is that it also comes with severe disabilities. It's a very rare genetic disorder and less than 1 in 100,000 people have it. There are no tests right now to confirm. He is on lists for studies.
We always knew that this could be a possibility, but we always hoped that nothing would be "wrong" with Spencer and that he would grow up to be an engineer, doctor, and astronaut. I always vowed he would be a productive member of society...we live in a world where a person with a genius IQ can do nothing, while a person who is severely mentally retarded can change the world. No matter his ability, I just hope I raise him right.
Today is just hard because I've suspected for a while now that Spencer is going to have some long term learning difficulties. This potential diagnosis almost confirms that fear. I will never stop hoping and believing in Spencer, but today I look at this beautiful thing we created and can't help but mourn for all the things that you expect when you have a child. I wouldn't trade Spencer for the entire world, but I hate what he has to go through and the challenges he may have to face.
Tomorrow I will say he will be the smartest kid with Ohdo Syndrome there ever was, but today I mourn.