Sunny days are here....

And I hope they stay!!

W can not be stopped. With his walker, he is a walking fool. He can almost walk anywhere. I say almost because some places are tricky, ie., grass, steps, some rocky areas. He has some new leg things (they are some assistive undergarments). These tera togs are supposed to help him keep his feet pointing forward. Since the poor child can turn his left foot backward! We have only had them on him twice and they seem to do there thing but man they are hot and bug the poo out of him.

Last month we got a second opinion on his upcoming tendon transfer surgery. And boy are we glad that we did! We love this new dr!! He thinks the tendon transfer surgery would be an unneeded surgery for W for all the reasons we thought is was. This dr, which saddly is still 3.5 hours away from us, is the man for us. Right of the bat he noticed something that I have been trying to get others to notice for close to 8 or so months. W has tibia torsion. His bones are turing in from his knees down. He is going to have to have surgery to fix it. It is a surgery that we get to plan in the close but distant future. He will have his legs broke and turned and then pinned in place. He will be in full leg casts for 4 weeks and below the knee casts for 4 weeks or longer. It is going to be tough but to know that one day my child's feet will be pointed forward just makes me so happy. Dr. D was so happy with the way W walked with his walker and the fact that he walks just as good without his DAFOs on. My boy will not be held back!! Dr. D has very high expectations for W and believes that one day he will be walking without any support other than some DAFOs. Talk about a weight being lifted off my shoulders!!

Since W has not gained any weight for close to 7 months, he is now seeing an OT for eating therapy. She has helped him a little. He is eating more fruits than he ever did and his at least putting green things in his mouth, not yet swallowing them but is getting them in his mouth! With OT, we have noticed that W doesn't move his tongue well at all. She believes this is also the reason why his speech is lacking! He says mama, bip, and oh man. If he is talking to or about a person he says, "mama". If he is talking about anything else he says, "bip". And he says, "oh man" when the time is needed. So hopefully we will be able to get his eating and his speech taken care of at the same time!!

Things are looking up. W is becoming an amazingly wonderful (if you could say those words about a toddler) toddler. I am loving every day!

Clinic is supposed to be this amazing thing...

I would love to meet someone that just loves clinic. (For those of you who don't know what clinic is, clinic is where they bring in all the drs you need to see to you all on one day.) For us, clinic seemed to be a God send. We live 3.5 hours away from the hospital, why would we want to go up there every other week to see a dr? Well, more and more we are really starting to dislike clinics. Most of the time, all the drs (or in this case nurse practitioners are not even there). Nothing gets my blood boiling more than knowing W isn't getting to see all his specialist. But clinic yesterday won first prize.

The dr we were most excited to see, we didn't get to see. Dr. Eeyore is what we call him. He is W's orthopedist. He wants to do surgery on W around the age of 2 (which is coming much more quickly than I would like.) Well, we were told that he was at a deposition and we should go ahead and leave because they didn't know how long he would be (this was at 4 pm). They opened the door and who walks past......yep, Dr. Eeyore. Can you believe this crap? We have been in that tiny little room since 1 pm. And he couldn't even take the time to come into our room to talk about the impending surgery?! You best believe I am one angry mama. We already don't like the man. So Bry and I decided this is not the dr for us. We are getting a new ortho.

So once we drop Eeyore and we already see Uro outside of clinic, that leaves just developmental ped in clinic that we see. I really hope that clinics work for some family because they don't work for us.

Other than that, clinic went well. It appears that W is having some problems with chewing and eating. We are now going to start him with an eating therapist and possibly the eating clinic down here. He is also now on a stool softener. That brings the med total to 3 meds and 1 vitamin. They were really happy with him other than is lack of eating and weight gain.

He did have a sweat test done to check for cystic fibrosis. We should get the results back from that soon. Surpisingly enough, they actually got a sample. We have never seen this child sweat, EVER. And if you know him, you just know that that totally makes since, he is Mr. Calm, Cool, and Collected.

And the tears fall like rain...

The moment has come. The moment everyone said would come. The moment that I knew would happen. The moment that a part of me felt would never happen. This moment was so amazing and I didn't even realize that it was the moment until hours later. And from that moment every time I think or say out loud what happened, the tears start falling.

What is this wonderful moment, you ask? Did W's test come back normal? Did W finally stop pooing all day, every day? Did he finally start talking? Did his new leg assistance get approved? Oh, none of those things happened. But it was so much better than all of them!!

My baby of 16 months, used his walker and walked by himself!! The longest he has gone is 5 steps but I will take it!!

It really is crazy how emotional I am about this. I remember when B first started walking, I didn't even cry a single tear. I just knew it would happen one day, and didn't see a real reason to get emotional, I guess. But things are so much different right now. I can't believe I actually saw him walk. This is one of the best days of my life.

I love when W accomplishes something. It takes away my anger about the whole situation for a little while. It brings a little more peace to my heart. And really makes me thank God for giving me W.

A thought about googling....

I knock myself all the time for googling things and trying to diagnose everyone in my family with something via google. But after having a convo with Bry today in the car, I am glad I google.

Sitting in a chair listening to a doctor telling you something is wrong with your child is scary. So scary, one does not really hear everything the doctor is trying to say. I now realize that by my research prior to the consultation with the doctor, I might be able to control that situation a little better than I did the last time. I do realize that by self diagnosing via google that worst case scenario is the one that you will find the most often, but I think that better prepares me for what the doctor will tell me. And maybe this is the only way I can control this situation. And even if it isn't, I am learning a lot of medical info along the way. :)

17 %....

The day of the diagnosis we were told W had 17 % chance of having something else wrong with him. 17% chance isn't a big percentage, but why does it always sit in my mind? Every time something unusual for W happens, I automatically think "well, here is that 17 % chance." His case just doesn't look like a typical case, and I just have this feeling that there is something else going on. Now is that mommy instinct or just me being paranoid? Will I ever know? Can I ever be at peace? I highly doubt it. I wonder if this is all because I still blame myself. I hope one day that I won't blame myself but I don't see that happening any time soon.

I have spent the better part of this morning (thanks Mickey Mouse Clubhouse and Handy Manny) and last night while Bry was putting the boys to bed, researching various diseases. Trying to find what is putting W into that 17% category. *As a side note, does anyone know how to block any medical research tools from my computer? I have now researched Crohn's Disease, Celiac Disease, and the ever so scary Cystic Fibrosis. As it appears he has more than one symptom for each. Oh the joy! They are already running a Cystic Fibrosis test (well they will be once we take him up north). All this waiting around isn't good for me. I can remember just like it was yesterday when the ultrasound tech said it looked like their was something wrong with his brain. I remember how I tried to stay strong the whole way back home and how I tried to not cry everytime I talked to another person about what the tech said. But I knew deep down that when those 19 days passed and we got another ultrasound, they would find something. I remember spending so much time looking up anything and everything I could trying to figure out what the tech meant by saying those horrible words, "enlarged left ventricle". I spent days believing that this boy that I have spent months praying for would never make it to the world so we could meet. I spent days believing that this was all in my head and none of what was going on was real. I spent days just crying my eyes out knowing that I couldn't control this and weither I liked it or not things for me would never be the same. After those 19 days, I thought I would never have to do this kind of waiting again. But all those same feelings have come rushing back. I can't control what is happening to W and I can't fix it. I am the weakest person when I have no control. And that is exactly how I feel right now, WEAK!

I need a new outlet

So I decided a new blog would be the best thing for me. I have so many thoughts and emotions dealing with W's birth defect. I am very hard on myself because of his condition. I get very angry at others because of how they see him or how the speak when referring to him. So please know that if you are a blog reader of mine, this blog is going to be pure raw emotions. I am laying it all out there in the open. So if you ever wondered what it is like to be the parent of a child with a birth defect, this might be your insight.