tired of Payton being sick

Can't she just be well for a little while? We went in Friday to find out that she has another ear infection. We had just been to ear, nose and throat on Wednesday and her ears were completely clear. Thankfully it was just an ear infection (even if it is in both ears) but it is from all of the nasal congestion that she had right now. All of that is draining and making her cough and wheeze to go along with it. I just need a little break where I am not constantly worried about how her breathing is. A little time where she can be a normal baby and not have to constantly need breathing treatments. I miss those days before she got sick that first time and we were only doing treatments twice a day! It is just so unfair that someone so small has to go through so much all of the time........

cystic fibrosis

Some days the reality of what we are dealing with is a little more clearer than others. Take today for instance, I am tickled to death that I have found hand sanitizer dispensers that will hang on the wall at the house. I have also spent the last 3 days pricing lamanent flooring for Payton's room b/c it will be easier to keep sanitized. Or like a few days ago when I had a meltdown in the middle of Target b/c I put her in the shopping cart without sanitizing it, just covered it with a blanket. Most days, it isn't that big of a deal and then others, I am down right obbsessive. You never know which way my mood will swing.

On the plus side, our walk last weekend went great! Yes, we got lost on the way over there and I was in tears by the time I got there (partially b/c I was lost and partially b/c I was upset b/c of why we were going). Once we finally arrived, I was just so excited to meet others who know exactly what I deal with face to face. We did breathing treatment and cpt for the first time in public without someone giving us a funny look for "beating" on our child. It was comforting to be able to sit there and not have someone stare at us the entire time we were doing her treatment.

Our next grand adventure into this is education day at the hospital. We were going to do the walk that day since it is my birthday but moved it so we can go to education day. Thankfully, Josh is going with me. He is a little more unfamiliar with everything that goes on at the hospital since he works all of the time and isn't able to make drs visits with us. We are going up the night before and spending our first kid free night since Payton has been diagnosed. She is staying overnight away from us for the first time but she will be in capable hands. I will let y'all know how that break down goes. If it is anything like the first time Connor stayed overnight away from me, I will proably be in tears before it is over!

Sick again..............

My life is a constant merry-go-round of sickness. Thankfully though, this time it isn't something we have to be stuck at home over. She got off with both ears being infected. Thankfully, it was nothing respiratory related. It wouldn't have been so bad, but we spent Tuesday night in the er b/c she was covered from head to toe in hives from the augmentin she was on. Turns out, she is allergic to penicillin.

Now that the hives are almost completely gone, we got out of the house today and took a walk to see the FFA cows. Payton then played, for the first time, in the sand box with her brother. It was too cute to see her sitting there, digging in the sand with both hands. I will be excited when she masters her attempts to sit up. She is slowly getting there.

Connor, I have learned, is way smarter than I realize sometimes. As we are watching Blue's Clues today, they are putting the steps to making muffins in order (mix, pour in the pan, bake, eat). If you give Connor that list in any order and ask him what you do first, he will tell you mix the muffins. You then ask him what comes next and give him the list again (minus mix) and he can tell you the next step! I was impressed with my little 2 year old boy! Sometimes though, being smart gets him into a whole lot of trouble b/c even at 2, he is a smart mouth. What can I say, he gets it from his mama!

All in all, things are pretty mundane around here. We do the same routine, day in and day out, with very little changing. We don't live an exciting life but it is definitely never boring!

Breathing treatments

So, at 4 months old, Payton has started crying for her breathing treatments. Take this morning for example, I had to wait an hour after she ate to give Payton her treatment. 15 minutes before it was time to start, she starts fussing. I can't make her comfortable. So we sit down and get the treatment set up. I notice that she is wheezing a little, which is normal. I get it ready to go, turn on the machine, and immediately, Payton quits fussing. I am not sure if it is really smart or really sad that she already is letting me know when she needs a treatment. She has gone from always crying through them to crying for them. She already knows that it will make her feel better! Hopefully, she will always feel this way about them!

Moving again!

As I prepare to write this, I am currently argueing with Connor over whether he can pull a piece of foam off of the egg crate on the bed!

But anyways, we are moving again! I am hoping that this will be the last time since we just moved the end of August. With me not working, we cannot afford the electrical bill for the trailer we are living in. So now we are preparing to move into a house that has a lower rent and a lower entergy bill! I have a little over a week to get everything packed to move and I have not even started. I hate to pack and I hate to move but this will be for the best! Now if only I could downsize as we go! It would make for one heck of a garage sale! So, if you have any experience packing, I am looking for someone to do this for me! J/k!

Long week

This week has been the longest so far. Both kids have been so cranky this week that I was finally brought to tears. I could not handle the non stop crying anymore. Needless to say, after a 2 1/2 hour nap, everyone was in a much better mood. I now need to look to the next 5 weeks. We are moving again and I also need to start fundraising for our Great Strides Walk. I am excited but nerveous at the same time!

Crazy Day

Some days, like today, are just crazy. The kids cry all day long, I am functioning on little sleep, and all I want to do is run away. And then, right about the time I decide I can't take anymore, they are calm. Connor is being sweet to me and Payton decides that I don't have to be standing to hold her. They give me a break long enough to regain my sanity before the maddness starts again. I wonder if they plan this when I am not looking. If they decide, lets see how far we can push her before she decides to cry. But I think that this is giving entirely too much credit to a 2 year old and a 3 month old!

My chunky baby....

So Payton is officially chunky! I have now had to pull out her 3-6 months clothes b/c she is too big for her 0-3 month ones. This puts her in the same size clothes as Morgan, who is 3 months older. Let's just say that her enzymes work great!

Appointments Yesterday

So yesterday was Connor's kidney check up and Payton had a visit with the cf Dr. Everything went great!

Connor's appointment was first. Dr. Swartz let us know that his left kidney still has fluid on it and that they did not get a good look at his right one. As long as the blood work comes back fine, they are not worried about repeating the ultrasound. He also had good blood pressure, which is a concern for patients with kidney problems. We will be released to come back in 6 months! That is a big step for us!

We then had an appointment with Payton's cf team. Since they started her on the antibiotics Sunday, her lungs sound better! The pedi thought she had an upper respiratory infection Monday when we saw them but they sounded clear yesterday! As long as her throat cultures come back fine, there is nothing to worry about there! They also canceled her appointment on the 9th and are moving it to the end of February! I will get a little bit longer before we have to go back again!

It was a long day of Dr's. appointments but Mom and I survived! We then spent the afternoon shopping in Houston! Hopefully all of the lab work will come back normal on both of the kids!

Headed back to Houston

We head back to Houston Wednesday. After 2 weeks of not going, I will be back there one day every week for the next three weeks.
We start with both kids having appointments Wednesday. Connor will go see his renal Dr and will have blood work done to make sure his kidney still functions properly. Payton then goes to the cf clinic (2 weeks early) b/c she has an upper respiratory infection. I know for a fact we will have a chest x-ray but beyond that, I do not know!

A week from Thursday, Connor goes back to Houston for his 2 year check up and to see his brand new specialist, the ear, nose, and throat Dr. We will hopefully find out why he has so many nose bleeds and they will be able to fix it.

Then, two weeks from Wednesday, we go back again with Payton for her normal CF visit. Hopefully nothing will happen before we get there!

I have just about decided a move should be in our future! I spend a good deal of time at Texas Children's Hospital these days! Maybe they should rent out apartments for their frequent customers!!!!!!

Potty Training

Okay, I am giving in. I have been waiting and waiting (and secretly hoping he would start without me) to start potty training and I am finally giving in. Not sure how nap and bedtime will go since he doesn't hold it either time, but we shall see. I am a little scared but hey, I guess after all we have been through, I can doanything!

Appointments!

Today we had 3 appointments for Connor in Houston. The first was his sweat test, the second his kidney ultrasound and the third his urologist. Well, his kidney ultrasound came back great! He has less fluid on his left kidney than he did a year ago! His urologist said that as long as his bloodwork comes back fine, we will not go back to see him until Connor is 5! That is 3 whole years! On the way home, Payton's cf nurse called to tell us that Connor's sweat test was negative! It was 10 in one arm and 16 in the other! Payton's were 96 and 100! So good news for Connor today and we don't have to go back to Houston for over 2 weeks!

Houston Tomorrow

Tomorrow we go back to Houston. I have been there so much since December 7th that I am considering moving. Connor goes for his sweat test, kidney ultrasound and check up with his urologist. I am most concerned about the kidney check up though. We are checking to see if he is still holding fluid on his left kidney or if he has outgrown the issue. We pray that it all comes back well and we don't have to look at another issue to deal with.

Genetic Testing

So the big topic of discussion with my family is, will my parents consider DNA testing for cystic fibrosis so that my cousins can know which side of the family it comes from. My dad says it depends on the cost......

Introduction

Hi! I am Kamie. I am a stay at home mom with a very busy life. I have two children. Connor, who is 2, and Payton, who is 2 months. I have two very special children.

Connor was born at 35 weeks. When he was 2 days old, the NICU doctors discovered a blockage coming down from his bladder. He was flown at 4 days old to Texas Children's Hospital, where we spent the next 11 days. When he was 11 days old, they did surgery to fix the blockage. At his 1 year check up, his left kidney still held fluid but the doctors are waiting to his 2 year appointment to see if it has corrected. We will be finding out Monday how it is doing but it will be something that no matter what happens will have to be checked often to make sure he isn't having any problems with it.

Well fast forward 18 months from Connor's birth. We found out I was pregnant with Payton and talked to Connor's doctors to make sure we didn't have to worry about the new baby's kidneys. We repeated ultrasound at 30 weeks and everything was fine, so we prepared to welcome a healthy baby. Payton was born October 30, 2010 and she was as healthy as can be, or so we thought. The end of November we received a call from her pediatrician that her newborn screen came back positive for cystic fibrosis. They told us they would send us for a sweat test, that she could just be a carrier. They performed the sweat test on December 7, 2010. That afternoon the doctor called us with the results: she has cystic fibrosis. We were floored. You always expect to deliver a healthy child and here we were with two that had major health issues. Not the thing two young parents expect to be handling.

Now, a month after diagnosis, we are doing good. We are settled into our routine and the treatments are becoming a part of our daily lives. We will know Monday if Connor is still hold fluid on his kidney or if it has dissapeared like the fluid on the right kidney had. We will also find out if he too has cystic fibrosis since they are testing him Monday also. It has been a roller coaster of emotions these last two years but the Lord is holding us together and giving us strength when we don't think we could handle another thing. He tells us that He will never give us more than we can handle and so far I think He is helping us handle all of this very well!