Appointment filled day. First we had our high risk clinic appointment where I finally got to meet nurse Debbie. She says, "You probably don't remember me..." I say, "Of course I remember you! I wrote an article for Complex Child E Magazine and you were in it!" I was pretty excited.
The visit itself was pretty productive. Spencer is up to about 25th percentile for height and weight and 85th for head size. We were referred to a behavioral peds to help Spencer deal with his sensory issues. We also talked about getting Spencer some AFOs and we have a referral out to their PT to make them.
Genetic clinic was kind of depressing. Dr Hopkin didn't mean to, but he kind of crushed some of the hope we have that Spencer will be a normal kid someday, as far as our spawn can be normal. We also found out that they are trying to figure out how to get Spencer tested for Ohdo. Money seems to be the issue at the moment, but they are working out a plan.
Tuesday, January 24, 2012
Thursday, January 19, 2012
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.
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.
Monday, January 9, 2012
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:(
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:(
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