I know in some of these blog posts I post a lot of information and some that are very personal things that we are going through as a family. But I figure if there is someone somewhere going through something similar they can read this and feel like they aren't alone and can help in any way. Because this road we are on is a pretty lonely road. Not very many families go to the doctor and have their doctor remind them that their child could pass away. That is our reality and that is what happened recently.
Last Friday we had our first neurology appointment since we left Primary's. It was definetly not my favorite. She mostly wanted an update on what is going on with him and to see him. There was really no new information. Here is the key points that we went over.
We are keeping his meds and dosing the same.
He may be put on another medicine when he turns 1.
May need to go out to the Mayo Clinic at some point to get evaluated.
Medically that was about it. No changes with a lot of maybes. But it was the unnessisary conversation that bummed me out. She reminded us that Holden could pass away from an infection or could not breathe and get brain damage. She also reminded us that his case is very severe and he will never be "normal." She also told us we need to have a plan in place for if he does get brain damage or an infection. She also told us that Jess and I could get divorced from the stress of raising a special needs child.
Rant begins now:
I am not going to worry about him one day maybe getting an infection or one day maybe not breathing and have brain damage that seems so very dumb to me. I could get an infection or stop breathing at any point and get brain damage. I could have a heart attack, cancer, or get in a car accident and pass away. But you don't see me waking up every day worrying about that. I hope that doesn't happen but I don't let it effect my day to day life. Why should that be any different for Holden? Now I know Holden is more at risk for different illnesses and infections and something as simple as a cold for you and I could be life threatening for him. Trust me, I am aware. And we are taking precautions the best we can to make sure he doesn't get sick or an infection. But I can't let that consume me because as of today he is here, healthy and doing well.
Also, I am aware that Holden probably won't be "normal." I think we realized that when he was born and over the last 3 and a half months of his life. But this is our normal. We don't know anything different. So yes, he may not be "normal" like other peoples children but to us, he is "normal." Jess said something that I loved the other day. He said that anyone can have a "normal" baby but not everyone will have a Holden. I love that. It's so true. We are so blessed to have Holden and he has taught us so much in the short time in his life.
Don't mind my half nakey wiggly boy!
Don't mind my half nakey wiggly boy!
Now what I didn't know is that our neurologist was also a marriage councilor. Don't get me wrong she is a brilliant lady and a very good neurologist but I don't think she is a marriage expert. You're telling me that having a baby with special needs is stressful and very stressful and hard on a marriage? Trust me we are living it so you don't need to tell us. BUT is it necessary to say that we could get divorced? Is it necessary to make a comment about anybodys marriage ever? It irritated me. The whole conversation irritated me.
Don't get me wrong I spent the next day and a half crying. No one should ever have to have that conversation. Any part of it. I don't wish that upon anyone ever! But it took a day and a half of talking to family and Jess to get me back on track. (we have an amazing family and support system) I can't spend my life worrying about the what ifs. None of us can. What we can do is enjoy life as it is now. Back to a couple posts ago I posted a quote and it is by far my favorite! "Worrying wont stop the bad from happening it just keeps you from enjoying the good!"
Now done with the doom and gloom on to the fun stuff!
We have got to take Holden home for 3 home visits. Yes I said 3! They were amazing!! Words cannot describe how amazing they were! It feels so good to have him at home even if it was for a little bit! But I was about to keep him there. The worst part of taking him home is bringing him back! But I am very grateful to take him home at all! He is also already up to 14 hours on the home vent!!! and I am hopeful that they will bump him up again on Friday! They said that once we got to 14 hours they start talking to home health to get everything set up for when we go home! Ahhh so amazing! I'm telling you we are on our way!
Let me just tell you a little bit about Holdy. He is the most stubborn serious baby I have ever met. If he does not want to do something he will let you know. He turns bright red and shakes his head and pulls away. Which is pretty impressive seeing as he doesn't move a ton, unless HE wants to. Everything is on Holden's terms. It's his world and we are just living in it. He is the best cuddler and loves to be held! He is a big boy! He wears almost all six month clothing! He has the biggest eyes! He is also very serious. He smiles but only every once in awhile and it is almost always when we look a way. He is a stink. He also moves a lot more recently. A lot more big movements which has been fun! They say that around 3 to 6 months his receptors change and I feel like we have seen a huge difference in his movement. We are still working on sitting and head control with him and sucking and taste.
I think that is about it for now.
I have also started a page for Holden on Facebook so if you want any updates on him or know when I make a blog post like the page!
Don't get me wrong I spent the next day and a half crying. No one should ever have to have that conversation. Any part of it. I don't wish that upon anyone ever! But it took a day and a half of talking to family and Jess to get me back on track. (we have an amazing family and support system) I can't spend my life worrying about the what ifs. None of us can. What we can do is enjoy life as it is now. Back to a couple posts ago I posted a quote and it is by far my favorite! "Worrying wont stop the bad from happening it just keeps you from enjoying the good!"
Now done with the doom and gloom on to the fun stuff!
We have got to take Holden home for 3 home visits. Yes I said 3! They were amazing!! Words cannot describe how amazing they were! It feels so good to have him at home even if it was for a little bit! But I was about to keep him there. The worst part of taking him home is bringing him back! But I am very grateful to take him home at all! He is also already up to 14 hours on the home vent!!! and I am hopeful that they will bump him up again on Friday! They said that once we got to 14 hours they start talking to home health to get everything set up for when we go home! Ahhh so amazing! I'm telling you we are on our way!
Let me just tell you a little bit about Holdy. He is the most stubborn serious baby I have ever met. If he does not want to do something he will let you know. He turns bright red and shakes his head and pulls away. Which is pretty impressive seeing as he doesn't move a ton, unless HE wants to. Everything is on Holden's terms. It's his world and we are just living in it. He is the best cuddler and loves to be held! He is a big boy! He wears almost all six month clothing! He has the biggest eyes! He is also very serious. He smiles but only every once in awhile and it is almost always when we look a way. He is a stink. He also moves a lot more recently. A lot more big movements which has been fun! They say that around 3 to 6 months his receptors change and I feel like we have seen a huge difference in his movement. We are still working on sitting and head control with him and sucking and taste.
I think that is about it for now.
I have also started a page for Holden on Facebook so if you want any updates on him or know when I make a blog post like the page!
