New info

So last time I wrote, I was pretty panicked. We had just got a phone call from our Drs office with the results from the CT scan. We were told he had mild hydrocephalus (some people still ask me exactly what that means)

I called our neurology office to get Kaesyn an appointment. Dr. Cs nurse said he would call me to go over some info, so as I wait by the phone, very impatiently, he never calls. The kids bedtime passes, still no call. I givr up and lay down to try to doze off, but my phone rings, at 9:30 at night!! It was obviously the call I had been waiting for. He says, It is something to worry about, but nothing to be "alarmed about" He feels that Kaesyn will be just fine, while we look over previous CT scans. And stated that it is not mild, it is "borderline" hydrocephalus. Still clueless.

Almost his whole life he has had this look in his eyes sometimes, I notice it when he tries to focus on something, but his eyes kinda roll to the side, not like cross eyed. It looks like hes being flirty or shy. Well after all this it concerns me so Dr. J and I thought itd be best to get him into Dr. C so that we can ask questions, get this whole thing over with. I am kind of scared to be honest. I know that its not going to be good news. So I have prepared myself for that. I am more scared that I will leave again failing Kaesyn and my self with no answers. I am so scared of walking out of their, still not knowing anything. Its not a matter of demanding answers, its about drawing a line to what you ask for. Do I want him to have an MRI. Yes. Does Dr. C think he should have one. Lets say no, even though I don't know. What exactly does that make me look like when I am saying I want something done, when a Dr, a Neurologist to be exact is fine with not doing it. It makes me look like a crazy over reacting mother. Well, I am that. But he does not see how not just the "hydrocephalus" stresses me out, but there is so much more. So an MRI showing everything in his ventricles are draining okay, is like woah, opposed to wait 6 months to do another CT scan. I feel crazy. I feel looney! I just want answers. I just want to get on with our life without ever having to beg our Great Lord that Kaesyns cough is just a cough and not a sign of him not going into respitory distress. Im tired of staring at his belly while I fall asleep to make sure hes not retracting. If he is retracting (which is VERY VERY often) I check this and I check that, if his nose flares, if his o2 sats arent above 95, I let the rest of my day go. I cant go on when he has his days like that. I from then on out watch everything he does, to make sure nothing gets worse. I call the ER to get advice from them. I post on my FB 20 million times about the emotions I feel, and how Im not sure I can go on. I hate living like this, and I hate my baby living like this, and I also hate my baby girl having to live like this to. She herself has had to give up a lot over all of this mess as well. She gets my attitude throwin in her face a lot. Im not "mean" to her. But It is hard to keep my patience when Im trying to gather up everything we may need to keep Kaesyns sats up, with her asking me if I can do this, and that. She needs help with this and this and this. She all of the sudden needs to go here and there. Of course I can not do all of that while I have a baby who is desatting to 90! Then at the end of the day…. Its just me. Sometimes I feel as if I really need a pat on the back. Not because Im stressed, but sometimes Im not so sure just anyone can handle the cards I have been dealt. But really when it comes down to it, I think anyone put in any situation they can deal with it. I have mentioned so many other times how I feel guilty because there are so many people who have it worse than me. I have it pretty good, I realize that. But its all personal. Im sorry for moms that have children that are in a worse situation than my son. I pray for them all everyday. I feel like sometimes I shouldn't feel the way I do. Its so hard. There are so many emotions to the whole thing. And I will never be able to get them all out.

Other days I feel like Im crazy. Even though I am sure Kaesyn would do fine at daycare. I am not comfortable with it. Yes I realize we gotta do what we gotta do, but right now things are okay. I have a great family and support as for as financially goes. However, that is far from the emotional support I need. Which its hard to be there for someone when they have NOO idea what you feel. Anyways the job, yeah I look at Kaesyn and Im like hes ready, he is ready to go to daycare, and Im ready to get ajob. But really…. I have no idea how thatd be possible when I sit an write out our schedules. He is at the Drs ATLEAST twice a week, even if we don't have something scheduled, something still happens and he still has to go. Now… I am prettttty sure no employer would like this, and Im pretty sure they would not even consider me as an employee. So as hard as it is on my self esteem and my self pride. Im just going to do what Im doing. Its not like my life is rotting away. I am trying to better myself, by going to school, which is going great btw. I take the kids everywhere I can, and we have a blast together!! Sometimes we cant do things as long as we like because Kaesyn starts showing signs of distress after being outside for too long, or at the pool to long. Yesterday we playin in the sprinkler and he turned soo pale, and was breathing fast and having a hard time, he was desatted to 84. I threw his o2 mask on, undressed him, and got him in dry clothes and he was fine. So guess the sprinkler is something he wont be doing again!

We have an appointment with Dr. C (neuro) Tuesday, so hopefully we find out more on this hydrocephalus stuff. Then Wed. he has an appt with Dr. F, our ENT . Im not sure what we will do there, but I guess we have to go before we go to Phili, which by the way , there is nothing new on that subject either!!

Hope everyone has a great week, and that you're enjoying summer!!!!! I know we are (for the most part)