Jacob's adopted and loved very very deeply. Jacob was born premature at 26 weeks and spent the first 4 months in the hospital extremely sick. Jacob was brought home with us to spend sometime with us until his health could get better. Mommy and Daddy grew very close to Jacob and loved him so much and asked if they could adopt. We had a very long battle with courts and won. We were now officially Jacob's MOMMY and DADDY.

March 2010 we found out that Jacob had Cystic Fibrosis. It was a very HUGE surprise and did not know how to cope with it at first. It was a huge relief knowing why Jacob was very ill and always in the hospital but then again we were scared to death. We are all getting better with it and learning how to cope with CF. We will never deal with it and that's because we will never stop fighting till we have a cure. Jacob's a very strong little boy and made it through everything else that has been brought his way and will continue to fight.

Jacob will FIGHT
Jacob will WIN
Jacob will SURVIVE

Jacob has taught our family "If you have LOVE than you have EVERYTHING"

LOVE, HAPPINESS, and GOD makes everything all better.

Thursday, June 17, 2010

He's not getting the best......He deserves more

I'm going to try and make this a quick one because as you can see it's late - I have not been getting to bed until the 1'ish time here the past few nights. I'm having a hard time getting to bed at night and then I wake up early on top of that. I have had so much going on these past few days that I think it's starting to effect my sleeping. I will get to that in a minute.

First, I want to share some pictures and talk a little bit about The Salt Room. Some of you have heard me talk about it and everyone's not sure what it is. I highly recommend it for anyone that has breathing problems. It's a room where the ceiling and floors are covered in salt and blows out a salt mist into the air as well. I really can say that I know this place really works and opens Jacob up. It's like going to the beach for 2hrs and only spending 45mins there. It's so much better - you don't have to worry about getting burnt, getting attacked by a shark, and no dragging the sand into the cars. They have an adult section where you can sit back and relax and really enjoy some quiet time or they have a child section where the kids can play in the salt. Check it out and see if there's something similar in your area. www.thesaltroom.com

OK, now off to the reason why I have not been able to sleep. I have been doing a lot of thinking and a lot of talking to mothers about Jacob's care that he has been getting from his CF Doctor. I will not mention the center that I go to on this site but I will say that my little boy deserves better care and dang it I will find it for him. I don't care if I have to travel 2hrs for him to get what he deserves, I will do it. In the past I have called the doctor at least 3 times before getting a call back and only once did I get that call back. The other times I spoke to someone was because I would call a third time and it's most likely cause I caught them in the office writing paperwork up to leave for the day. I called them yesterday and again this morning about Jacob coughing A LOT more than normal and I'm worried that he may have picked something up from me since I just got over Chronic Bronchitis. I even stated that in the voice mail and do you think I had received a phone call back yet, NOPE. After speaking to a wonderful mother the night before last on the phone for a couple of hours and then another mother tonight I have come to find out that the center that Jacob goes to is not even Cystic Fibrosis Accredited Clinic. I will sure be changing him to a new center. I have been told by both mothers that there is so much more out there for Jacob that he should be getting but he's not.I was also informed that there are two medications that Jacob's taking that's the same thing just different names and is a NO No.  There's so many test that should be done and that's not happening as well. I will be calling some centers that I have found on the cff.org site tomorrow morning and looking for a new center.

So with all that being said I think that's why I'm so stressed out lately. I don't want these people showing that Jacob is not important enough to call back and wont treat him like he's important because he's not considered a EXTREMELY ILL CHILD. I don't want my son to get to that point and need their help to make sure that does not happen. when he's extremely sick - I want them to treat him like he's important NO MATTER WHAT. Our kids matter and you are a doctor because you want to help people - so then DO IT.

I will update everyone tomorrow and let you know how it went.
Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)