Another week under our belt

I have to say, I am thrilled this week is over. We had lots of appointments and the surgery of course and I am so glad its the weekend. Owens healing so well from surgery. His cut is thin and looks great. Owens testicles are undescended (I am sure one day he will thank me for putting that on the Internet), so they surgically brought one down when they did the hernia as well, so those stitches look great and he seems to have no discomfort.

This week we also had our neurology appointment. I was afraid of this appointment. The pediatric ortho had mentioned that due the fact that Owens feet are asymmetrical, one bending up and one bending down and under, that there may be a problem with his spine. After meeting with the neurologist, I think she thinks they will find something as well. Owen has some dimpling at his joint contractures. Dimpling may indicate that there is a deformity in the spine. So we are going to have a full body MRI to see what is going on. The neurologist was very happy with the sensations in his feet and legs, the fact that he can feel is good. He has good reflexes and he has strength in his legs and feet, as well as in his arms and his grip. All of these things are good for his chances at mobility later in life. I cannot wait to have the MRI and just know what is going on in there. It will also tell us if his brain looks normal. I think his brain is normal because of the way he looks at me and follows me and because I just do. I can't explain how or why I think a 6 week old has a normal brain, but I do. I guess I will definitively know after the MRI.

We had a really good hearing appointment. Owen can hear out of both ears. His nerve is perfectly normal. He has some fluid or possibly a smaller space in his right ear that may be making things a little muffled for him, but she said a little help from the ENT and he will be able to hear us perfectly. It felt great to have a good result.

By Thursday, I felt like we were finally checking things off the long list of things to be corrected. Hernia- check, hearing- check, right testicle-check.

Friday we had OT, PT, Ortho and Pediatrician appointment. PT and OT were great. Owen may not love being stretched, but when he is done, he is long, straight, loose and feels completely different to hold. He bends. I try to do what she does at home, but I just do not acheive the same result. Maybe its the amount of pressure or placement of her hands or just knowing what you are feeling for. Needless to say, I try and hopefully, he is getting something out of it. As for his feet, both are attempting to revert back to what they were, however, we have been trusted to continue to stretch them and wait to cast again. We will have another round of casting, another tenotomy and more braces. Its an ongoing process. Owen hates having his feet stretched and he cries the whole time. As you can imagine, this is not motivation to do it for a million hours a day. I wish there was a way we could explain to him. Instead, it feels like we are just hurting him. I need to toughen up or get thicker skin. If I did not do it and one day he could not use his feet, he would probably ask me why I didn't do it. So we keep on pushing.

We were told we just got approval for our genetic testing for Escobar Syndrome. If any of you have googled Escobar, you may find that what you read is really terrible. There are things about progression and respiratory problems and death. I have met with our genetisist and asked him about these things. I am told, by him, that the progression usually refers to the scoliosis. Some kids with Escobar are born without scoliosis, so it progresses and can cause respiratory issues. Owen was already born with the scoliosis. His lungs are used to breathing like this. Not to say that it could not get worse, however at this time, we are not worried and neither is anyone else. Sometimes the internet is not a friend. The one thing I can say is that with respect to the symptoms that come with Escobar, Owen has the majority of them. I would imagine that we will be told that is what he has. The genetist thinks so and so does the neurologist. We shall find out soon enough.

Caleb is good. The reflux is better sometimes now that he is on the Prilosec. But most importantly in Caleb news... he started smiling! Not smiling when he has gas either, but actual look you in the eye, smile. He smiled at my mom first, but today, he looked at me and gave me a big smile. It was so damn cute. It made me so happy.

Gavin is good too. We got his kindergarten graduation outfit this weekend and he has been riding his bike like a madman. Aunt Beth is in town helping us, so he is making her play all different types of games with him and she is indulging him for now.

Next week we will make appointments for the MRI and the eye doc and we have thyroid testing, OT, PT, ortho and our early intervention PT evaluation.

Hope everyone has a great week!