I'm writing this blog tonight with so much on my mind......These past few days have been extremely overwhelming in so many different ways.....
So much has change in such little time....I'm trying to be strong for everyone but when will I start to realize that I need to be strong for myself to continue helping everyone around me. It's just my nature to help everyone and put everyone first. People that I hold so close to my heart are aching and I just wish I could take the pain away from them.
Well today the heart aches have just gotten bigger.... I have grown so close to so many incredible families in the CF Family and to loose one of our families that holds all of our hearts is hurting more then words can ever describe. Little Conner is struggling with every single breath he takes in and it's so UNFAIR
Why.......... Wish I could just take away the pain he's going through and the pain the whole family is feeling
No parent should ever have to watch their child die......
Not sure WHEN we will have the answers - hope it's soon - not sure how much more any of us can handle this.
These are our Children
Our Husbands, Wives
Our Mothers, Fathers
Our Brothers, Sisters
Our Grandfathers, Grandmothers
Our Friends
I'm going to leave this blog with just one big open hurting heart for everyone that's hurting......
If I could I would
Take all the pain away
Lots of Love Conner - Spread your wings and fly
Thursday, June 24, 2010
Monday, June 21, 2010
Quality time means the world
Quality time means the world to me.......Spending time with my children is priceless.
Let me start off saying I hope everyone had a wonderful Fathers Day yesterday. Hubby worked yesterday and my two older children went and spent the evening with their Dad. The two youngest and I did nothing except clean up a huge mess in my kitchen. Our Father from above wanted for us to hear him yesterday and brought us a huge storm. I really do love sitting on the porch and just watching the wind blow. Anyway, things were a little different yesterday. We lost power for awhile yesterday, ceiling in the kitchen developed a major leak causing ceiling to cave in, and dinner got delayed for 2 hrs. I guess things could have been worse - we made it and we are all still safe.
Today, the kids and I left the house at 9am and didn't get home until 4pm. We really had a very fun day and did something we have never done. First we started the morning off doing two appointments and then the rest of the day was for fun. I took the kids over to Harry P. Leu Gardens. That place was really nice and the kids even enjoyed their time there. I will say one thing though - it was hot out there day and that place really gives you a workout when it comes to walking. We spent a couple of hours there and headed over to the bowling alley and bowled a couple of games. I signed the kids of for a program called "Kids Bowl for Free during Summer" It's really an awesome deal. I think Jacob enjoyed the music more then bowling. We had a hard time getting him to stop dancing to throw the ball. LOL He's so cute and loves his music and dancing.
I only have 2 appointments tomorrow and will not be doing anything else besides those two. I'm telling you - one day out all day with 4 kids can really make you tired. I should get home tomorrow around 1pm and will do nothing more but clean the house and cook dinner. I promise. I know I always say I wont pick up anything else but always seem to do that. Like today I was suppose to have no appointments and somehow got the two. That's OK though - It's all good.
Let me start off saying I hope everyone had a wonderful Fathers Day yesterday. Hubby worked yesterday and my two older children went and spent the evening with their Dad. The two youngest and I did nothing except clean up a huge mess in my kitchen. Our Father from above wanted for us to hear him yesterday and brought us a huge storm. I really do love sitting on the porch and just watching the wind blow. Anyway, things were a little different yesterday. We lost power for awhile yesterday, ceiling in the kitchen developed a major leak causing ceiling to cave in, and dinner got delayed for 2 hrs. I guess things could have been worse - we made it and we are all still safe.
Today, the kids and I left the house at 9am and didn't get home until 4pm. We really had a very fun day and did something we have never done. First we started the morning off doing two appointments and then the rest of the day was for fun. I took the kids over to Harry P. Leu Gardens. That place was really nice and the kids even enjoyed their time there. I will say one thing though - it was hot out there day and that place really gives you a workout when it comes to walking. We spent a couple of hours there and headed over to the bowling alley and bowled a couple of games. I signed the kids of for a program called "Kids Bowl for Free during Summer" It's really an awesome deal. I think Jacob enjoyed the music more then bowling. We had a hard time getting him to stop dancing to throw the ball. LOL He's so cute and loves his music and dancing.
I only have 2 appointments tomorrow and will not be doing anything else besides those two. I'm telling you - one day out all day with 4 kids can really make you tired. I should get home tomorrow around 1pm and will do nothing more but clean the house and cook dinner. I promise. I know I always say I wont pick up anything else but always seem to do that. Like today I was suppose to have no appointments and somehow got the two. That's OK though - It's all good.
Saturday, June 19, 2010
Not much........
Not too too much happened today but enough to make me go "where did the day go" . I have actually been thinking that a lot lately and I just want the day where I can think "will this day hurry up and end, I'm so bored" I'm sure that wont ever happen but I can sit back and dream for that day.
This morning Austin had his appointment with the counselor and after that I took the kids to the park to play for a little bit before it was time for Jacob's Salt Room appointment We were outside for 20 minutes and had to end up leaving because of the heat. Jacob just can't do Florida heat - either can I for that matter. I looked over at him while he was on the swing and saw his face blood shot red and he was coughing up a storm. I asked Jacob if he was ready to leave and he said "Yes" real quick I knew it was too much for him. We ended up packing up and sitting in the car with the air blasting right on him for about 10 minutes before we headed over to the Salt Room.
The Salt Room are running an awesome special that I just could not past up. They are letting Jacob bring a playmate for free for the summer - that's awesome for me cause Austin can go. Today was Austin's first time being in the place and he just thought it was the coolest place on earth. Even perfectly healthy people love it.
So finally after leaving the house at 10am we pull up to the house at 2:30pm - boy oh boy that was a long day Nope my day did not stop there though. Jacob was beyond grumpy and just would not take a nap for anything. Jacob's been in a lot of pain these pass couple of days with not being able to go #2 so I don't think that's helping matters. My poor guys stomach was even hard and swollen. After the HORRIBLE storm that we had tonight Dave was able to run down to the store and pick up an Enema for Jacob. He didn't cry while giving it to him but he was so mad. He was so mad that he got on the toilet and said he was going to push that nasty stuff out. Well he pushed all that nasty stuff out - 20 seconds later. After Jacob was finally able to get that past he was one happy camper.
We always have something going on even if I say not much is going on. Even if I don't have at least 1 appointment a day scheduled somehow something will get added on at the last minute. As of right now looking at my schedule I have 9 appointments coming up for this week - I hope more does not get added on cause I'm not sure where they will fit. Good night everyone and by the way Early Happy Father's Day........
Friday, June 18, 2010
Showing Concern.......
1 phone call can make a difference..that's all I ever asked for
Yes, here it was 3:47 on a Friday afternoon and still no call back from Jacob's OLD Doctor. Yep that's right I said OLD Doctor. I have made a choice to switch Doctors and I really think that I'm happy with my decision. I'm laying in bed this morning listening to my baby cough so much this morning and the first words out of his mouth is "Mommy, why won't my cough go away?" I sit there and give him a hug and say "Hunny, I'm so sorry and we are all trying to make it better for you and all the other wonderful people in the world." I wish that part was correct - the part where I say we are ALL trying - In reality I feel like there are some Doctors or shall I say staff that's not trying as hard. Jacob's Doctor still not called us back and to me that shows you just don't care. I called them Thursday morning and left a message explaining to them that he's been coughing more than normal and I just got over Chronic Bronchitis and I was worried he may have picked something up if they could please call me back right away. I left another message yesterday yesterday afternoon cause I still had not heard from them. No call back yesterday or today - not even so much as a call saying "Sorry, we don't care enough to do our jobs" This is not the first time that this center has ignored my phone calls before and I'm sure it would not have been the last. I as a Mother made sure that it would be the last time they would do that to my son.
I found out last night from a wonderful Mother how I could find Accredited Cystic Fibrosis Clinics in our area and found that there was one located in Orlando so I gave them a call and yep 30 minutes later I received a phone call back. I sat there on the phone with the Nurse for 30 minutes and had more questions answered from her in 30 minutes then I have received in 3 months from Jacob's Doctor. I really liked what I was hearing and decided to change his Doctor to them. The Nurse told me that she would have someone call me back to get all our information and schedule the appt. She said the earliest she could get us in would be Wednesday but if I felt he should be seen earlier or if things got worse to call his Primary Doctor or take him to the ER. Within 20 minutes after speaking to the Nurse the registration lady called me back - got all my information and confirmed the appt.
So that's it - we are changing doctors and I will be calling to cancel his 3 month check up that's scheduled for Wednesday. When those nice little office staff people can ask me why we are switching I'm going to tell them in a very nice way "I love my son and he deserves EXCELLENT care and that's something you could not offer my son at this time"
Yes, here it was 3:47 on a Friday afternoon and still no call back from Jacob's OLD Doctor. Yep that's right I said OLD Doctor. I have made a choice to switch Doctors and I really think that I'm happy with my decision. I'm laying in bed this morning listening to my baby cough so much this morning and the first words out of his mouth is "Mommy, why won't my cough go away?" I sit there and give him a hug and say "Hunny, I'm so sorry and we are all trying to make it better for you and all the other wonderful people in the world." I wish that part was correct - the part where I say we are ALL trying - In reality I feel like there are some Doctors or shall I say staff that's not trying as hard. Jacob's Doctor still not called us back and to me that shows you just don't care. I called them Thursday morning and left a message explaining to them that he's been coughing more than normal and I just got over Chronic Bronchitis and I was worried he may have picked something up if they could please call me back right away. I left another message yesterday yesterday afternoon cause I still had not heard from them. No call back yesterday or today - not even so much as a call saying "Sorry, we don't care enough to do our jobs" This is not the first time that this center has ignored my phone calls before and I'm sure it would not have been the last. I as a Mother made sure that it would be the last time they would do that to my son.
I found out last night from a wonderful Mother how I could find Accredited Cystic Fibrosis Clinics in our area and found that there was one located in Orlando so I gave them a call and yep 30 minutes later I received a phone call back. I sat there on the phone with the Nurse for 30 minutes and had more questions answered from her in 30 minutes then I have received in 3 months from Jacob's Doctor. I really liked what I was hearing and decided to change his Doctor to them. The Nurse told me that she would have someone call me back to get all our information and schedule the appt. She said the earliest she could get us in would be Wednesday but if I felt he should be seen earlier or if things got worse to call his Primary Doctor or take him to the ER. Within 20 minutes after speaking to the Nurse the registration lady called me back - got all my information and confirmed the appt.
So that's it - we are changing doctors and I will be calling to cancel his 3 month check up that's scheduled for Wednesday. When those nice little office staff people can ask me why we are switching I'm going to tell them in a very nice way "I love my son and he deserves EXCELLENT care and that's something you could not offer my son at this time"
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.
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.
Wednesday, June 16, 2010
Growing up way too fast......
Today I have learned that our children grow up way too fast. Within a blink of an eye our kids are learning how to walk, going on dates, and graduating from high school. We should never take life for guaranteed and live each and every single day as if it was our last. I don't think I have ever lived life to my fullness and I missed out on so much as a child. I can't turn time back and try to relive my whole life but I can sure help my children live their live to their fullness.
People that live with Cystic Fibrosis or any other major health illness really looks at life in a different way. They look life in a whole different view and I just wish that everyone else in this world had the same view of life the same way. This world would be such a happier and healthier place to live.
Today, I dropped off a bunch film to be developed that I found in my closet.....talking about a joyful and uplifting moment. I'm telling you if you don't realize how fast your little ones grow up loose some pictures for 4 years and go back and view them. So much as changed and I would NEVER change anything. So much has happened in 4 years - good and bad and I have learned so much from it. I have to say I have learned to be a better mother, wife, and friend in that time. Not only do our children learn so much as kids and growing up, but we as parents learn so much as well from them. My children have taught me so much in life - they are the best teachers that I have ever had or have. If you were to go back 4 years ago and ask me about my today's life if I ever taught that I would happen I would have to say NO - I'm wrong though. It's all happen and much more.
I'm thankful for so much and will start to live my life in a much better way. I will try to live life like my Jacob and all the other wonderful friends that I have developed in the past few months.
I'm thankful for my beautiful children being the best kids that I could ever ask for
I'm thankful for Jen and Tony trusting me
I'm thankful for my husband standing by my side and always trusting me
I'm thankful for my mother for always being there for my family
I'm thankful for my friends that have stood by me and continues to stand by me
I'm thankful for my new develop friendships that I have developed
I'm thankful for God
I'm thankful for LIFE
People that live with Cystic Fibrosis or any other major health illness really looks at life in a different way. They look life in a whole different view and I just wish that everyone else in this world had the same view of life the same way. This world would be such a happier and healthier place to live.
Today, I dropped off a bunch film to be developed that I found in my closet.....talking about a joyful and uplifting moment. I'm telling you if you don't realize how fast your little ones grow up loose some pictures for 4 years and go back and view them. So much as changed and I would NEVER change anything. So much has happened in 4 years - good and bad and I have learned so much from it. I have to say I have learned to be a better mother, wife, and friend in that time. Not only do our children learn so much as kids and growing up, but we as parents learn so much as well from them. My children have taught me so much in life - they are the best teachers that I have ever had or have. If you were to go back 4 years ago and ask me about my today's life if I ever taught that I would happen I would have to say NO - I'm wrong though. It's all happen and much more.
I'm thankful for so much and will start to live my life in a much better way. I will try to live life like my Jacob and all the other wonderful friends that I have developed in the past few months.
I'm thankful for my beautiful children being the best kids that I could ever ask for
I'm thankful for Jen and Tony trusting me
I'm thankful for my husband standing by my side and always trusting me
I'm thankful for my mother for always being there for my family
I'm thankful for my friends that have stood by me and continues to stand by me
I'm thankful for my new develop friendships that I have developed
I'm thankful for God
I'm thankful for LIFE
Tuesday, June 15, 2010
The start of a new thing
Well this is my very first entry - so here we go.
Today we started our morning off by doing our normal routine and that's Jacob's breathing treatments and all his medicines. Some mornings are better than others. I'm hoping the day will come that he will understand that this will just be something that he will have to do everyday of his life and will just do it. He's so young right now and just does not understand.
After our morning of doing all medicines we were FINALLY able to motivate ourselves to get out of the house and take care of some errands. Jacob and Austin were so happy to get to the store to buy some surprises for their new develop friendships that they were starting to develop. The kids had helped me the day before by picking some kids to become penpals with. I don't think they understood though that they could not become penpals with EVERYONE though - lol
We first went to Wendy's to have lunch before we got to the store. Today our Wendy expiercienc
Today we started our morning off by doing our normal routine and that's Jacob's breathing treatments and all his medicines. Some mornings are better than others. I'm hoping the day will come that he will understand that this will just be something that he will have to do everyday of his life and will just do it. He's so young right now and just does not understand.
After our morning of doing all medicines we were FINALLY able to motivate ourselves to get out of the house and take care of some errands. Jacob and Austin were so happy to get to the store to buy some surprises for their new develop friendships that they were starting to develop. The kids had helped me the day before by picking some kids to become penpals with. I don't think they understood though that they could not become penpals with EVERYONE though - lol
We first went to Wendy's to have lunch before we got to the store. Today our Wendy expiercienc
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