Ramble.

So the oxygen equipment and supplies came in the other day. Naturally, Spencer threw a shit fit over me even trying to put the cannula on his face. He would hide his little face and cry if I even lifted it, breaking my heart. So I decided it wasn't worth the stress for both of us and emailed his doc. Spencer may have won the battle, but I shall win the war. Anyhow, we have orders in for Spencer to do blow by oxygen, which I'll probably have to wake up a million times a night to readjust...either that or duct tape it to his pajamas. Either way, it's a hell of a lot less anxiety for my SPD kid so it works for me.
Today he was having giggle fits. He was going nuts over everything earlier. He was dancing and doddle-bopping and everything. I guess he was pretty excited to be left at home while Jimmy and I went on a date. Yes, a date. With no child. We've only been on two or three dates since Spencer was born, mainly because of lack of a baby sitter. We had a giant steaks at Texas Roadhouse and wandered around Walmart for a while...what else can you do in Ashland, Kentucky?
I've come to the sad realization that we need another medical cabinet. With all the extra oxygen supplies, we have no more room. We are also out of room in our small bedroom we are living in while finishing the house, so putting in another cabinet really isn't an option. I'm still trying to figure out what to do with his supplies once we finish the house. Do I let it take over his closet or do we keep doing the cabinet system? There is also the delicate art of not letting it take over his room and making it look like a hospital.

The Penis Chronicles Revisited.

Spencer's bazillionth surgery was today. Seriously, I've lost count. Anyhow, he had a scope, one testicle lowered and a revision on his circumcision. The testicle they lowered was near his kidney. It isn't very reassuring when your renown urologist assures you your kid has some of the most screwed up anatomy he has ever seen and that he had to do a procedure that he only has to do once or twice a year. That's our boy! Keep in mind his eye doc said the same thing about his tear ducts. Anyhow, Spencer is doing great and is currently playing. He is managing the pain well. His penis actually looks like a penis for a change. Bad news is that the doctor still couldn't get his testicle completely down and he has some creepy ass hole thing where his scrotum once was.
We were also told that based on the condition of his testicles that he probably won't be able to have children. News of this kind of devestates me. We always figured he would want to adopt rather than have biological children because of the risks of passing on his genetic condition. It still sucks to be told that he might not even get to choose.
I don't think I mentioned that little man has to go back on 02 at night. This should be fun with our kid with sensory issues. I spoke to his pulmunologist and we agree that if he flips out too much we'll try other options. I really don't want to recreate the defensiveness from being on oxygen the first time. We were expecting to be told that he was done with oxygen at night for good, but alas it's not the case:(

And the penis chronciles continue

So it appears Spencer has a tethered spinal cord. I've been told by multiple people the surgery isn't too bad, but it scares the hell out of me. Figures a routine MRI to check his butt dimple would turn into possible neurosurgery. That's my boy. Anyohw, I'm setting up a neuro consult so hopefully we'll know more soon. It could explain his foot problems.

Anyhow, the penis chronicles continue. Apparently his cicumcision went rogue and has to be redone. He about gave the urologist a heart attack because he couldn't find some glands or something. Then he found them and had a mini melt down because he felt like a failure. At least it's nice to know I wasn't crazy. We also have him booked for surgery next month to bring down the first testicle. We did discuss that Spence has a hidden penis that will require more surgery. Our urologist and I are like BFFs.

They Found It!!!

So they have finally identified the gene that causes Ohdo Syndrome. I plan on having Spencer tested as soon as they are available. I'm scared but excited that we will finally know for sure if he has it or not. Apparently the change is on Chromosome 10, KAT6B. It's amazing how something so small can cause so much damage. I can't believe they finally found it. For some parents, they have been waiting to diagnose their kids officially for over 20 years.
Good news is, that if it is Ohdo, that it isn't something that Jimmy and I caused, which means in theory no future spawn will have it. Not that I wouldn't love another Ohdo kid just as much, but I'd rather not have a second child with it. I can't put another baby through what Spencer has had to go through.

Brush the baby

Today was Spencer's first day of brushing therapy. We're hoping it helps him a bit with his sensory intergration disorder. He pretty much cried through it all today, but his OT remains pretty optimistic that it will help him. We have to brush his back, arms, and legs, and do compressions on the joints every two hours. So now we are trying to do feeds every three hours, brushing every two, incorporating different tactiles, and trying to get him to eat orally. Since Jimmy and I are on opposite schedules, we are both trying to tackle it alone. It's going to be a rough few weeks, but hopefully it will help. We are going to work on hands and such later on.

Double Fun

We finally got the results of Spencer's last sleep study. His apnea has gotten worst, doubled in worse-ness actually, but he is still in the mild range. His oxygen saturation levels are better, and that is what kept him off 02 again at night...for now. The doc wants to do another echo to make sure his heart isn't having any hypertension problems. If he does, then it's either back on oxygen at night or CPAP. We've been warned that CPAP will mess up with his already messed up jaw, so O2 is the only logical option. Big question...how do you keep a kid with aversions to having anything on his face on oxygen at night? I was pretty devastated by the news; I though we were done with him being on supplemental oxygen for forever. I had planned on coming home and celebrating.
His feeding is coming along pretty well. He flips out over anything on a spoon, but will eat pretty much anything sugar-filled that we put in his mouth. He loves Swedish Fish and cereal puffs. Tonight he ate a whole serving of tomato puffs, which taste like ketchup. What kid can resist ketchup?
It's becoming quite apparent that Spencer's sensory issues are pretty severe. He has some type of sensory intergration disorder. I'm overtly paranoid about all this turning into autism. Anyhow, we're going to start brushing therapy with compressions next week to hopefully help him with some of his tactile issues.
I also bought little man his first pair of tights. We are turning them into shorts to wear under his cloths to help provide support at his waist. If it works, we'll probably end up ordering him a spio-type suit. Have I mentioned how much I love his new occupational therapist? I actually like all his new therapists...but she goes above and beyond. When we went to the center's Halloween party, she climbed in a jump house with him and he had a blast. She gives him hugs and kisses and says he's her new favorite and she is going to take him home with her. Her little sister has CP, so I think she really gets it on another level.

Quick Post-Op update

Spencer's surgery went well. He looks and is acting awesome for a kid who had part of his face cut off. We are calling it his old man surgery. He was compared to Benjamin Button since he has hearing aids, had an eye lid lift, and is getting a walker soon.

We figured he would be confused and screaming his head off after surgery. He was very mellow and seemed happy to see us. Before surgery, it was the first time I was there when they put him to sleep. It seems like every other time that they put him under he got the one OR room that they don't have an anthesia area separate from the OR. He's considered an anthesia risk, so they didn't feel comfortable putting him under in the hall so we could be with him. Anyhow, it broke my heart. He just stared at me and looked so confused. Of course, I lost it. I tried to keep it all in, but it about killed me. I couldn't tell him I loved him without losing it, so I waited until he was asleep. Thinking about it now, I should have signed it to him.

It took forever to get us back to recovery. He was still snoozin when we got back there. After he woke up, he didn't really cry or anything. He was up and looking around in no time. His face was pretty swollen, but I believe he was able to see better already.

Good news, little man doesn't need glasses! His vision is in the normal range for his age. It doesn't mean he won't need them in the future, but we are safe...for now.