Good news first.
Kaesyn had a wonderful winter/spring. He got pretty sick, just one time. YAY! We were in Oklahoma when he got pretty sick, with his coughing episodes. But within a few weeks he was well again. Seems like the malacias maybe getting better! YAY for Kaesyn! He did decide to climb up on a chair, and it tipped over and broke his foot. Poor guy. He was in a boot for a few days, then we tried a cast for 2 weeks, now he is in a boot again. We see the Doctor 6/17, this Friday to see what will happen from there.
Now on to the more complicated issues. His ear infections just WILL NOT go away, we had some lasting 3 weeks to a month. Because of this we went to see an infectious disease doctor. He did fabulous at explaining everything to me, but Kaesyn was being a monster, and I really did not understand a lot of what he was saying. I had a nurse explain over the phone. Kaesyn has excessive mucus, and an extra pocket in his ears, to where that mucus sits, and collects bacteria and its constantly infected, it gets backed up, and drains out his ears, and into his throat, which obviously goes into his stomache. ID doctor said thats explains Kaesyns explosive, abnormally STINKY diapers, and thats also why when he gets an ear infection, and we treat it with antibiotics, it gets rid of the infection in the path, but not in this extra "pocket" Kaesyn has. Because his airway tissue is sensitive that also leads to breathing problems on top of the issues the malacia causes. He wants the tubes out of his ears, and he wants to test him for primary ciliary dyskenesia(a rare, ciliopathic, autosomal recessive genetic disorder that causes a defect in the action of the cilia lining the respiratory tract (lower and upper, sinuses, Eustachian tube, middle ear) and fallopian tube.)However, the ENT needs to do that, and she is not comfortable with putting Kaesyn to sleep. So plan is, next time another Doctor wants to put him to sleep for a procedure, she will come in and do her thing.
We went to see the GI doc, for follow up and to try to control Kaesyns "explosive abnormal stinky diaper" problem. He was a joke. I plan on NOT going back to him, EVER. He pretty much said that it was normal, theres nothing we can do ect ect. It is far from normal. So no answers there. Hopefully soon he will be cast/boot/diarreah free so he can go swimming!!!
Moving on to even more complicated things
In March he had an MRI. I was so scared. I broke down crying in the waiting room. It took forever for them to do the MRI. I knew something was wrong with him. With his eyesight/funny movements of his eyes, tremors, delays. The MRI was finished with, and we went back to see the neurosurgeon 2 weeks later. He tells me everything was fine. I was okay with that, I was glad, obviously. I just could not accept that answer, with everything going on, I KNEW something was wrong. I requested the report and seen things in there such as brain matter missing, enlarged ventricles, thinning of the something or another. WHAT? BRAIN MATTER MISSING?!? yeah, thats not normal, and sure in the hell is not right. I begged for a second opinion and went to 2 different doctors. Both told me their theory was at one point he had hydrocephalus, which enlarged the ventricles pushing the brain matter away. Okay, makes sense. But what does that mean for Kaesyn? No one could tell me. I made an appt with our neurologist. He was so wonderful. He sat down, looked over everything I had highlighted in the MRI report, and explained it all to me and showed it to me in the pictures. He said Kaesyn, infact has communicating hydrocephalus. He showed me his report where he diagnosed him a year ago. I have that report. He did. He sent us to the neurosurgeon,to get an opinion on a shunt and he disregarded the neurologists diagnosis, of course he was pretty upset about that. He said a year ago, and said again he does not think Kaesyn needs a shunt. Id have to agree at this point. Even though he has some issues from the hydrocephalus, he is improving, not getting worse. I hear that shunts can cause more problems then help, so hopefully he will never have to have one. The neurologist wants Kaesyn in intensive occupational and speech therapy and believes that he can live a full life, he maybe delayed but he will be able to eventually overcome everything everyone else can.
My emotions were so out of whack. When I went in Childrens Mercy today, I was not expecting to have a diganosis, but I was more scared walking out of there, again, with no answers, than getting a life changing answer, and honestly, I started to believe it was not hydrocephalus, and it was something minor causing his tremors and other problems. So I was shocked. I wanted to cry. Im not sure if it was because someone FINALLY listened to me, and believed me. I dont know if it was because we got an answer, or if it was because he does have hydro. Maybe all of the above. I am just so thankful, that I am blessed enough to see my baby laugh, play, learn, and interact with his big sister (that he just absolutely adores!!!) and I. I have met the most amazing people through out this WHOLE entire journey, and without them, I would not have gotten the answer I got today. If it was not for them fighting for the same thing, I would not have known to fight. I would have left alone believing "everything was normal" A LONG time ago. Thank God for them, and my mommy bear instincts.
It feels SOO great to have one of the biggest concerns answered. Although I am sure I will always hover him and be paranoid and have questions, we know how to help him, and AN ANSWER!!! <3<3<3
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