It has been awhile....

I have neglected this blog for quite awhile. I use Facebook for my updates and honestly everything has been so crazy I haven't been able to sit down for a long enough period to write. Not even sure where to start as we have seen so many Doctors so instead of chronologically I shall update from head to toe! We discovered Colin is unfortunately having seizures. They are centered in his right frontal lobe and they occur some days up to 20 times. They are very short and only last 5-10 seconds. First his eyes roll back into his head, his eyelids flutter, if sitting up he loses muscle control and his head drops and about half of the episodes his left side of his body jerk and shake. He is currently taking Trileptal to control them and so far he hasn't had any big side effects from it and I am very thankful for that. The hole in his heart originally considered an ASD is confirmed to only be a PFO which means it needs no repair or treatment and isn't causing any issues. However, he did some some mild pulmonary hypertension. It isn't enough to warrant treatment but his cardiologist will monitor and recheck in about 4 months. The biggest news by far is that bc of his frequent respiratory infections and weight loss he had a Gtube placed Dec 7th. He also had a fundoplication at the same time. A fundo strengthens the flap that holds the stomach contents inside so it will stop his near constant reflux he has had since birth. The G tube is huge as it means we can finally ascertain if aspiration was the cause of his respiratory issues. I am hoping that this means fewer hospital admissions than last winter. It will also help me put some weight on him as he fell drastically off the growth charts. He is still recovering from this and it requires quite a bit of equipment to haul around. Some parents try to hold off as long as possible to go to a G tube bc it makes them feel like a failure as a parent. Honestly I never viewed it that way. I guess knowing that about half of the kids with his syndrome end up with one at some point in their lives helped bc I have anticipated it for a while. Because he has an under developed lung I have had to really be vigilant about breathing treatments and I was always so worried anytime he was sick that he would aspirate. Actually multiple drs have been AMAZED that he hasn't ever had pneumonia. A respiratory therapist told me yesterday that for him to have a diaphragmatic hernia it is a MIRACLE he hasn't ever spent time on a ventilator, in the ICU or with pneumonia. But knowing he can be fed through this tube takes a huge weight off of me. Developmentally he is very delayed and it is hard to accept sometimes but seeing his amazing smile makes all his therapy worth it. I still have difficulty with seeing other kids his age bc of the huge walking milestone. In fact a couple months ago a coworker of mine announced that her daughter (who was born 2 weeks after Colin) was walking. It literally felt like I had been punched in the gut. But then a few days later she was in the store and I witnessed her walking. I lost it. I ran to the back of the pharmacy and started sobbing. I could hardly breathe. She rushed back and profusely apologized but it was NOTHING she did. It was something I needed to go through. It was another milestone that won't be hit for awhile (or ever). I have to go through things like that to fully appreciate every little thing he does do! Of course it hurt but I had my cry, wiped my tears and went on. And that night when I got home I hugged my little man and just loved on him. This life is FAR from easy but I am so blessed it is amazing. Who else can look at their child and see a true miracle, hero, angel, pure contentment and pure love??? He is literally the purest soul I have ever met. He only knows love. He only knows how to be happy. He is just the most perfect creation in my eyes dispute the world seeing him as handicapped and disabled. On Dec 19th I am seeing a neurosurgeon in Kansas City, Missouri that has experience operating on cysts like mine on my spine. I am praying that he is able to operate on mine and give me pain relief. I ask for your prayers as this is literally my last hope. Only 4 drs in the country operate on these cysts. My back has gotten so bad I am unable to work anymore. Fortunately my employer has paid disability so I can focus on getting this fixed. Having my pain reduced would change my life in so many ways. Please...anyone reading this pray this Dr will be the miracle I need!