I love to have a routine!!

I decided that we need a new routine! The one we have just isnt working for us anymore. I had a really good one before I went to work and then after I started working it messed it all up. So now I have to figure something out that works for us all. I figured that if I typed it all up here, it would be easier for me to follow it. So here we go!
I am just making it up as I go so I may make changes as we try different things.
Oh, and yes, I know we get up early. But hey it works for us so thats why we do it!

5:00- mommy and daddy wake up
5:15- kids wake up
5:30- take daddy to work
6:30- get home and kids watch tv while mommy gets on the computer
7:30- breakfast time
8:30- Tyler goes down for a nap and Jake lays down for quiet time or nap time and mommy cleans
10:30- boys get up from resting and watch some tv or play
11:00- lunch time
11:30- Art time with boys
12:30- water play time
1:30- Tyler goes down for 2nd nap and Jake works on school work
2:15- Jake lays down for quiet time
3:00- mommy cleans up from the day
4:00- Daddy comes homeAnd then the rest of the day we spend however we want.

I just like to have a schedule for me and the boys during the day because it makes things go by so much faster and we have such an easy day!

I also got a call from the PT yesterday saying that now that tyler is walking he is no longer qualifyed for PT. I am pretty upset about that. I know I should be happy but I really liked him being in it and I thought it helped him out a lot. And what I dont get is when she said "And if the test comes out positive for WS he will be qualifyed again." So just because my son has a disability it makes him qualifyed even tho he is doing the exact same stuff he is now. Its just strange to me. We should be hearing the test results very soon. She said early this week and its been early this week. So hopefully I will know something today!!

Found out test results for one more...

Fragile X is now counted out. The test results came back normal! we will find out the WS results early next week!!

Britney

I just feel so bad for Tyler sometimes. I know he doesnt know any better but its getting really hard on me. He is constantly having diareah, His nose is always dripping, if he gets around too many kids he gets sick, he is alway wheezing. And there is nothing I can do for it!! Thats why I feel so bad. I wish we could just hurry up and find what is wrong with him so that we can get some kind of treatment started. And if nothing is wrong, than they need to focus on why his nose is always dripping, and why he always has diareah. This process seems like its going to take years to complete and I am not looking forward to going that long with this. I just want my baby to be healthy and happy!! He is completly miserable right now because he is so sick. We went and played at the mall on Friday and now are we paying for that. Back to the doctors to say we have another ear infection and get put on breathing treatments again. It was a nice 2 months without a breathing treatment but I guess good times have to end sooner or later right? In the next few weeks we are going to be changing doctors. Not because the one we have is not doing a good job, because she is great. Its just that we have a guy that lives down the street and goes to our church that is opening up another practice and so we want to get in wtih him. Its just so much easier to have someone we know and trust as a doctor and also because of tylers health problems he is so close that if we ever need him after hours he can help tyler because hes his doctor. I ask him so many questtions right now but he cant ever answer me because he isnt Tylers doctor and he could get in trouble for telling me something. So now he will be able to look at Tyler when hes sick and let me know what he thinks is wrong. Which will be so much better! Expecially if Tyler does end up having a disease.

I hope everyone had a nice fathers day and told the father in their lives that they love them.

Britney

Sorry I havent wrote in here in a while. I guess we havent gotten any news so I havent felt the need to write. Although Tyler DID start walking finally a few days ago!! Finally a good milestone we are so happy about. I got the boys pictures taken and so thats why I was going to post on here. I am going to post pictures so you all can see them. No one can see when I tell them about the course facial features that Tyler has but when you see him and his brother in these pictures you can really see the difference. Here they are..

Ok, so I have sort of an update. Yesterday I called the first Geneticist (Dr. P) and asked her assistant why they sent me blood work orders because I never remember them sending me anything. She said that she paged Dr P. but she never called her back so she would leave her a message and then she would call me back the next day (today). Well she calls me yesterday and said that she talked to Dr. P and that she was going to call me back tomorrow (today) to talk to me. Well she called this morning and told me that these tests are to test ALL chromosones and test to see if there is any deletion going on in there. So she sent me to this lab in Tempe which is about 30 min from my house. We drive all the way out there to find out its their corp office and they dont see patients there!! So we had to drive all the way back home and get the tests done there. So they take them and here we are back waiting for results. I wish Dr G (the dr we saw a few days ago) would hurry up and send us the urine tests for MPS. That is the test I really want to hurry and get done. I want to rule that out before anything but now I think that we wont have that answer for a while. So I guess we will just see what the other tests say. I am hoping we will know in the next 2-4 weeks or so. In the mean time I am studdying up all I can on all different genetic disorders. If Tyler doesnt have anything, I dont know what I am going to do. Of course I am going to be happy but I still know that there is something wrong with him. I know that probably makes me sound horrible but I just look at him and I can tell. there are so many things that shouldnt be the way they are and there is no reasoning for it. I guess if he has nothing than I will be very happy but in the back of my mind I will always wonder well...what if. I guess if he has NO real problems I should just leave it at that and thank God that he is fine! I know through all of this I have met some GREAT people! And I see their kids and I am so touched by the love that they have for their kids. And I know I will never forget some of the people I have met.

On another note...I got a call from Tylers PT and she said that we were assigned another case worker. I dont know why or what happend to our old case worker but whatever...as long as Tyler gets his PT we will all be ok.

Well this is my first post on here. I am sure I will bore a lot of people but thats alright. I really want to write to get things out when things go bad and when I feel stressed. I guess for the first blog I will tell you about our story and where we are right now.

Since this blog is about Tyler I will start with him. Tyler was born Dec. 28th 2004. he came 4 weeks early measuring at 6 lbs 2 oz. He was not breathing when he came out and so he had to be under oxygyn for 3 hours before he could come back to the normal nursery. His baby life was pretty normal. We had an ear infection here and there but thought nothing of it. Than Nov 05 came and he started to get real sick. From Nov-feb 06 he had Pnemonia, RSV, the flu twice, and Bronchitus. He was on lots of breathing treatments and had to give him a steroid 4 times a day. Finally he started to feel better and we havent been sick since. We got new insurance and so we had to get a new doctor. I called and called around and everyone I called was full and they were not taking any new patients. Finally I called this one practice that I had heard about but didnt think it was right for us. Well they had a spot open so off we went to meet this doctor. Our first visit we walked in and she kinda looked at us strange. We sat down with her and I told her about tylers breathing problems and when he was sick and everything and she excused herself and went into her office. She came back with this big book of genetic disorders. She said that Tyler might have a disease called Mucopolysaccharidosis. Or MPS as its shortened. She then told us that he has course facial features and thats what really set it off. And hes developementaly delayed and so she knew something was wrong with him. We had an appt to see a geneticist and to get some testing done. We had an xray and blood taken and they both came back negitive for MPS. Which is a GREAT thing!! Well now they know he has something, what he has no one knows. So thats where we are now. We are testing him for a bunch of different things and seeing what comes back. He is getting tested for 3 things right now. Hunters which is MPS2, Williams Syndrome, and Fragile X Syndrome. I will keep updating on our doctors appts and the results of the tests.