Tuesday, September 12, 2006

Ketchup (Sorry no fries with it)

It has been a while since I wrote last, for all those looking for Dillon updates – I apologize. I also apologize for how long this blog is going to be, but it is the only way to catch up on all that has happened. Over Labor Day, Josiah and I went to Ohio to see my family. My grandfather has cancer again and he is turning 70, so we all wanted to get together to see him. The three of us were there, my grandparents, my parents (and their dog), my sister and her husband (and their dog), my aunt and uncle and their three kids, and my uncle and aunt and their five kids. The only ones who weren’t there are my uncle and aunt and their son because they are in Italy (Army). Needless to say, Dillon never lacked for cuddles!

Saturday night I put Dillon to sleep on his tummy and around 6am the apnea alarm went off. He had put his face straight down in the bassinette. This is the only time the alarm has sounded. Praise the Lord we had the machine because that had nothing to do with his health problems that was just being a normal baby. Can you imagine what our Sunday would have been like if we didn’t have the machine?

Sunday morning when we got to Church, to the church my parents go to and I used to go to, my mom and dad had bought Dillon a little suit so I went in to change him. Daddy was surprised when I brought Dillon out in black socks, black dress pants, a white dress shirt, a vest and a tie! (Yes, I will be putting pictures on eventually!) Service was great, and it was so nice to see everyone again. I saw my friend who has a baby 9 days younger than Dillon. It was a little hard because he is a lot more advanced than I thought he was (which means more advanced than Dillon) but it was not as hard as I thought it would be.

The rest of the trip was wonderful, I enjoyed seeing my sister and the rest of the family. I also saw a friend from high school and a teacher that I had all four years of high school, and a teacher my sister and I both had in Middle school. Josiah and I took Dillon in the hotel's pool with us and he seemed to really like it. He started talking up a strom and didn't have his mad face on so we think he enjoyed it! The last night there I forgot to give Dillon his meds at 2am and couldn’t figure out why he woke me up every single hour and every time he was in the bassinette playing! On the way home he woke up about 5:30pm and stayed awake until we got home at 7pm and then played HARD for about an hour and a half. He was scooting and lifting his head, pushing up with his feet and just kept going and going. I wonder if it was due to the fact that he missed a dose of medicine.

Dillon had an ear appointment on Thursday. All they told me was that it is not water in the ears nor is it ear infections. Therefore it is hearing loss. We have to go for yet another test to see how bad it is. I have done some research and it seems like this type of hearing loss can be helped to some degree by hearing aids or implants. We will see. The doctor made me very upset by acting like there was no rush whatsoever in finding out if Dillon has any hearing at all. It would be different if it were HIS son that that could be both blind and deaf – I am pretty sure he would see it as a more urgent matter.

On Friday the mom of a friend of mine from church drove Dillon and I to his appointment in Philly. She was so sweet, not only did she drive and refuse money for gas, but she bought lunch and coffee and then after the appointment milk shakes! It was a good time of fellowshipping with her. The appointment was a developmental check up thing. BORING! After talking with the doctor I have come to the conclusion – I am done with doctors! I am not going to any more appointments than absolutely necessary. They leave me discouraged for days afterwards where all I can do is look at my son and start crying. She told me that MRI’s are not convulsive. You can have an normal MRI and not be “normal” and vise versa. So – why am I about to put Dillon through yet another MRI this Thursday? Why am I going to let them put a tube down his throat again if he isn’t already sleeping for it? Why do all this to find out nothing has changed and just to have my hopes up? Why do it because if it does show improvements it doesn’t change any of the therapy we are doing with him? Good questions. I am waiting for the neurologist to return my call to explain to me why I am. (I am also asking if we can switch Dillon to a less drowsy medicine. Plus someone told my mom a blood test will tell us if he has CP or not – I am finding out if this is true.) Okay, back to the appointment on Friday – they told me Dillon’s muscle tone is weak so I happily told them how he pushes up on me and stands up etc. The os-so-nice doctor then told me, “Oh, well he is probably in the switch over state developing the CP.” There is no winning with these people! First he is too lose and then he is too tight. I give up! Not on Dillon or on believing God can fix him, but on the doctors! Truth be told, I have battled with getting mad at God – but it only seems to happen after I hear all the woes from the doctors – that is why I am finished with them as much as possible. The only helpful thing the told we was to get an early intervention vision therapist to come to the house, just in case Dillon can see. So I am waiting to hear back from the coordinator on who is going to come.

I found a doctor on the internet and to make a long story short (because this blog is long enough already!) There is a place about 5 miles from my house that does Vital Stim therapy. It is using electric shock treatments to help swallow. It sounds mean but it is apparently painless. There are amazing statistics from this therapy. I have a call into them as well. The website – if you want to read more about it is – www.VitalStim.com

This pretty much feels you in on what has been going on with Dillon and I. Hopefully I will be able to keep posting more often so they aren’t this long. Again, I am sorry for the length of this post. I will try to put pictures on, but I will not have the internet tomorrow so not sure when I will be able to.


Abbi said...

Wow! Sounds like you all had a whirlwind week! Glad you're back!

Oh, and I heard Dillon's "Amen" at the end of the service on Sunday night! :)

Happymama said...

Tiffany, I must say you sound like you have busy busy busy. I've been catching up with your posts and looking at your family pictures at flikr. Dillon is such a cute little thing. I could just squeeze him.

You know, the lack of muscle tone could be because of the medicines you mentioned. If he's constantly drowsy, he's not using those muscles. So duh!! (The "duh" was for the doctors, not you. LOL) And I think you would be making a wise decision to ask all of those questions that are troubling you. Make sure you write all of your questions down so you won't forget to ask one. And if you feel strongly about it, don't ask for a less drowsy medicine, demand one. It sounds like he was extremely active when you forgot his meds. I am a very firm believer that doctors do NOT know everything and that God has given us mothers a sixth sense about things when it comes to our babies. Now, I'm not saying to ignore EVERYTHING they tell you, but, go with your gut, girl. You'll be fine. ;)
I think one of the major problems with our doctors today is that our "health care" system is so crazy sending us to this doctor and that doctor, we end up having fifteen different doctors for fifteen different problems. None of them concur with each other because they're "all correct" in their dianosis and prognosis and every other nosis they come up with. They don't know the history of the patient, or even try to get to know them on a personal level. Can you tell I've been frustrated in the past and actually the present with doctors?? I wish things would go back to how it was fifty years ago....but with all the modern technology. When people were patients and not cattle being herded from office to the next. :) I should be posting this on MY blog, sorry. LOL

Anyway, Looking forward to seeing more pictures!!