Radek Loves to Breathe

Month in Recap

2012-01-17T13:16:00.000-05:00

I recently took a little bit of a blogging hiatus, mainly because life has been so emotionally draining lately that I barely have the strength to function, let alone write about it!! Writing about my journey forces me to relive it and reliving the past month wasn’t something I was emotionally ready to do until now…

The week before Christmas we had a really big scare with Radek. He was admitted to the hospital for his THIRD admission. He caught RSV (Respiratory syncytial virus-a very common virus that leads to mild, cold-like symptoms in adults and older healthy children. It can be more serious in young babies or those with high risk conditions) and it wreaked havoc in his little body, especially his lungs! His O2 stats even got as low as 85% requiring him to need oxygen (something he never needed).

Even though Radek was suffering from a virus, his doctor decided to go ahead and give him iv antibiotics for the simple fact that his lungs were so irritated and inflamed that he didn’t want to risk any unwanted bacteria making a home in them. When Radek goes on iv antibiotics they insert a PICC line in his arm because it’s a more long term iv and he is able to go home with it so we can continue his meds there instead of him having to stay in the hospital.   When giving him a PICC line they take him to the OR and give him anesthesia. Even though it’s a quick and easy procedure, it’s very uncomfortable and much easier to do if he is sedated. Unfortunately, when they intubated him for the anesthesia, his already irritated lungs couldn’t handle it and had an extremely difficult time recovering!
When I saw him in the recovery room it was heartbreaking..I have never seen him in such distress!! I would compare it to trying to catch your breath after the hardest workout of your life!    Because of this they hooked him up to a CPap machine (similar to regular oxygen, but it puts air into your lungs with more force.) He also had to spend the night in the ICU. THANKFULLY while he was there he had a really easy going doctor that patiently put up with his unstable O2 stats. His CF doctor told us that we got really lucky with the doctor that was on that night, he said if it was any one else they probably would’ve intubated him. Meaning they would’ve given him drugs to paralyze him and put a tube down his throat to breathe for him. NOW THAT is something I would not have been able to handle SO THANK GOD it didn’t happen and luckily by later the next day he was stable enough to go back to the cf floor.

I have to say…Other than the HUGE ICU scare, Radek being in the hospital was probably the most relaxed I have been in a VERY long time. Even though I couldn’t see Peyton that week because I didn’t want to pass the RSV to her, it was such a comforting feeling being in the SAME city as BOTH of my kids. There is something so unsettling about always being a hour and half away from one of your children on a daily basis. It’s a feeling that even after 6 months still absolutely kills me. It was just really nice to have some good quality one on one time with each other!!

As far as Peyton goes….It’s still the same oh sooooo frustrating battle of trying to get her to gain weight!!

Thankfully she was able to have her broviac removed on Saturday January 7, which means NO MORE TPN!!!! She is also FINALLLY up to full feeds!! Now she needs to prove that she can consistently gain weight on her own! I actually had my hopes that she would be home this week, but it doesn’t look like that’s going to be the case. I hope it’s soon though because I am emotionally, physically, and mentally drained. I honestly don’t know how much more I have left in me.   I want to look forward to her coming home, but at the same time I hate getting my hopes up and then getting them crushed. At this point I forget what it feels like to truly be happy and feel complete…this really NEEDS to be over….uuughghghghghghghghggh!!

P’s Big Move

2011-12-12T11:19:00.001-05:00

Last week Peyton was moved out of the NICU and into a regular hospital room. This for me was not something I was too excited about..

The NICU staff has gotten to know and love Peyton these past 5 months. It took me a while, but I learned to trust them taking care of her and was even at the point although it took several months that I was able to leave her there without major anxiety and tears. In the beginning I had many many nights at home laying in bed unable to sleep because I was filled with anxiety that Peyton was laying in her crib, crying her eyes out, and none of the nurses could get to her because they were too busy.
I know it’s a good thing that she doesn’t need the intensive care setting anymore, but in that setting the nurses are much more involved in her care. Each nurse only has 2 babies, which they can see at all times from their desk, so P was constantly being attended to.

She is now in a room all by herself with a nurse that has 3 other patients to take care of other than her. It seriously KILLS me leaving her here….I am trying desperately to split my time evenly between Peyton and Radek, but I can’t help but feel like I am completely abandoning her every time I leave her in this room alone.

I slept here with her the first 2 nights to make sure she adjusted ok. The NICU is always bright and loud and this room is quiet and dark at night so I wasn’t sure how she would transition. THANKFULLY it has been going great…As much as I hate having her here in this room alone when I’m at home with Radek, I absolutely LOVE it when I’m here with her.
The very first night I slept here with her was by far one of the best feelings in the world. Just sleeping in the chair next to her crib in complete privacy with no one around was amazing. Listening to her breath as she was sleeping in the dark room with just her and me was something I never had the chance to experience with her. I actually feel like she’s mine now. When she was in the NICU I felt like I was just going there to hold her, almost as if I was borrowing her. Now we can sit together and watch TV “since she has one now”..She’s even allowed to leave her room to go on walks!

As far as the progress goes for her feeding issues, everything is still pretty much the same…She’s currently at 24ml’s with her goal being 29ml’s. Every time they try and increase them, her body seems to get thrown off and she starts stooling out and not absorbing. I had a talk with the doctor the other day and informed her that if they can’t get her up to her goal feed amount in the next month I’m going to take her home on TPN (her iv nutrition making up for the amount she’s not eating). The reason I didn’t do this a long time ago is because the doctors insisted that they are confident that they can get P off of the TPN, not to mention it’s horrible for her liver. Her going home on TPN is going to be A LOT of work for me. Not only is she going to need to be hooked up to an IV pump, she will also have her ng tube in her nose so she will be hooked up to a feeding pump as well. Life will definitely NOT be easy!

They also informed me that if she goes home on TPN it’s going to take twice as long to get her off of it then if they do it in the hospital. At this point though, she’s going to be 5 months old tomorrow. By me giving them one more month to figure this out will bring her to 6 months. I CANNOT have her in the hospital any longer than that! It’s not fair to her, it’s not fair to Radek, and it’s not fair to Shane and me.

I don’t want to sound negative, but I honestly don’t think anything major is going to happen in the next month. I truly believe that I will be taking her home with her being at pretty much the same as she is now…not quite at her goal and still on TPN, but at least by me holding out another month I won’t second guess myself while I’m home trying to keep up with all her care. I will know that I did EVERYTHING I could to try and make her as manageable as possible to come home.

P’s new room!

I hung pictures up on the top of her crib of Radek, Shane, and Me so she doesn’t feel so alone…I also hung flowers up that match her nursery theme at home so it feels at least a little bit like home!

This is the ballon Radek picked out for her in the gift shop the other day.

The view from her room couldn’t be more perfect for her brother…A construction site with bulldozers and dump trucks AND even several train tracks behind it!!!

I am now able to take P to the cafeteria with me!! This is her this morning hanging out while I ate breakfast…Oh how I LONGED to do things like this with her these past 5 months!!!

brother and sister loveeee

2011-11-28T11:23:00.000-05:00

Peyton Update:

Peyton was doing great! She was up to full feeds and off of her TPN “her nutrients through her broviac”. Unfortunately she started turning yellow once again, sweating profusely, and not absorbing her feeds which she did the last time she had a UTI. She is now being treated with iv antibiotics AGAINNN for another UTI and they lowered her feeds until the meds kick in and her body starts recovering. Once she recovers from this UTI they are going to run a couple tests on her bladder and her urinary track to see if something anatomically could be wrong causing these reoccurring UTI’s.
So once again I was super excited about all the progress and about the thought of FINALLY being able to take my baby girl home and ONCE AGAIN I feel like someone kicked me in the stomach!!!!

On a good note, even though we are having all these set backs, I feel as though we are closer than ever to getting her home!!

at least they are happy!

2011-11-21T12:15:00.000-05:00

Even though our life has been in complete dysfunction these past 4 months, I think we are handling it pretty well for the most part. Radek is such a trooper…He truly is being so amazing about all of this. He understands that his Mommy and Daddy have to leave him on a regular basis to go be with his baby sister. He seems to understand that she’s sick and she needs us and can’t come home until she’s better. Even when he see’s a big building on TV that resembles the hospital he points out that that’s where Peyton is!

Peyton on the other hand will not be home for Thanksgiving like I had hoped. At this point I am not even counting on her being home for Christmas. She was doing so good as they were increasing her feeds, but once they got to the goal amount her body started stooling it out not absorbing it. She has two HUGE hurdles in her way though…She has “short gut” from having 80cm of her intestine cut out, this is a huge issue in itself. Most babies with ONLY the short gut issue have a really hard time absorbing food. She has this to contend with along with the CF malabsorption issues on top of it. Luckily her body should over come all of her “short gut” issues and obstacles within the first year.

They also diagnosed her with a UTI last week, which she’s currently on iv antibiotics for. They are hoping that might have played a role into why her body wasn’t cooperating with her feeds.
Her feeds were stopped on Friday and are going to start again today….SO YES this weekend was awful with a starving miserable baby. Her nutrients are being given through her broviac which unfortunately doesn’t fill her stomach. They are starting her feeds at 5ml and hopefully will increase by 5ml’s every 12 hours until she gets to 25 depending on how her body cooperates.

As frustrating as this all is I have to remember how far she has come. I was having a conversation with one of the nurse practitioners the other day and she made it a point to tell me that when Peyton first got here they didn’t think she would make it. This hospital gets the sickest of the sick babies from all over the world and they didn’t think that MY BABY was going to live!! Not only is Peyton alive, she WILL BE FINE!! Yes it’s taking MUCH longer than I want it to, but reminding myself how far she has come and just the simple fact the she IS HERE is what is getting me through this…

Not only is she here…but look at her!!!!!

As you can see, Radek has been busy being a crazy rambunctious toddler….

that LOVES to play in the dirt!

He even made the transition last week from toddler bed to big boy bed!

This is Rad the the Please Touch Museum..One of our FAVORITE places to take him and it’s only a mile from the hospital!!!

and the emotional rollercoaster continues…

2011-11-08T14:05:00.001-05:00

Peyton thankfully is doing wonderful as far as her health, her personality, and her development goes. My little almost 9lb baby (she was over 9lbs but recently lost weight) is such a HUGE inspiration to me! She is constantly cooing, smiling, and seems to always be in a good mood. I find this to be nothing short of AMAZING considering everything she has gone and STILL goes through on a daily basis!

I will start with the good news. They were able to stop giving her the lovenox injections because they re-ultrasounded her arm and the blood clot was gone. This is a HUGE relief to me!!! She was getting these shots TWICE a day since the end of August rotating the injection site between her arms and her legs. I did the math….she has received OVER 128 needle injections JUST for the lovenox!!! I’m not even counting the biweekly blood work and many many IV’s! Her legs and arms are so black and blue with welts and knots under her skin from getting all these injections. It was one of the hardest things for me to witness her go through. The craziest thing about it is that she didn’t even cry most of the time when they would poke her with the needle. She is so use to getting poked and prodded that it doesn’t even phase her! So THANK GOD the blood clot appears to be gone and it is one less thing she has to go through!

Other good news is that she has FINALLY reached her full feeds goal this week. The feeds are still being given to her through her ng tube. Right now they are giving her the full feed amount spaced out between 3 hour, so she is getting fed 24/7 because she is due to eat every 3 hours. The next step is to compress the feed time to 2 1/2 hours, then 2 hours, then 1 1/2 hours, then 1 hour, then 1/2 hour, then FINALLY HOPEFULLY she will be ready to take the feed through a bottle and eat normally and not need the tube in her nose. The doctor plans to compress her feeds in the half hour increments reducing the time every other day…so we still have a while to go before she can eat from a bottle. They are doing it this way to slowly ease her intestines into working to digest the food.

Since she is now on full feeds they stopped giving her the tpn nutrition via her broviac (the iv nutrition that she has been on to help her thrive since she wasn’t eating). This is were it’s getting frustrating…Unfortunately, since she’s been off of the iv nutrition she has been steadily losing weight, even with her being on full feeds. They have been adding calories to her feeds by adding formula and fat lipids to my breast milk. They were about to put her back on the iv nutrition but they decided to hold off yesterday and give her one more day to gain weight on her own and thankfully she actually did!! The iv nutrition is something I am REALLY hoping she doesn’t need to be on long term. It effects her liver because it is constantly being pumped through her body so it never has time to rest. It makes her liver enzymes really high causing her to be jaundice. From being on it for so long the whites of her eyes are actually yellow. So even though it does help her thrive it also effects her…Not to mention long term iv nutrition means she will need to keep that tube in her chest and constantly be hooked up to an iv pump. So although it looks promising that she gained weight last night, I’m trying to not get my hopes up.

I'm trying to stay positive, but it seems like every time something good happens it is followed by something bad..constantly giving me that feeling over and over again like someone is punching me in the gut! I was truly starting to believe that she would be home soon, I really had my heart set on her being home by Thanksgiving and my family FINALLY being able to meet her. Now with her losing weight I feel like everything is up in the air again and the light at the end of the tunnel once again feels unobtainable!

I don’t know how much more my body can handle..I feel like someone is ripping a piece of my heart out every time I leave her to come home, and I feel the same way every time I leave Rad to go be with her. I NEED this to end soon. The doctors need to see her gain weight at least 5 days in a row to even consider going home anytime soon. Although I don’t want to sound negative, I really don’t have my hopes up. I can’t handle the disappointment anymore!

Wordless Wednesday~painting pumpkins

2011-10-26T11:42:00.000-04:00

Last Year

Catching Up

2011-10-24T14:05:00.003-04:00

I’m sorry I haven’t had any updates lately on the status of Peyton, but life has been crazyyy to say the least! She has now been there for over 100 days (which I honestly CANNOT believe)! I seriously feel like my life has been on hold since July 14, the day she was born. It’s as if someone pushed a pause button on that day and it’s not going to play again until she comes home.
Lately I have been spending a lot less time with her at the hospital and a lot more time home with Radek. I’ve been making the hour and a half drive back and forth to and from the hospital probably 4 times a week. This has been going on far too long for me to be away from Radek for more than a day at a time anymore! Although it does make me feel HORRIBLE leaving her for sometimes 2 1/2 days, I can’t bear to be away from Shane and Radek for such extensive amounts of time anymore. I've been feeling extremely homesick and am beyond sick and tired of sitting in the NICU (which doesn’t even have windows) for hours upon hours a day, just sitting there holding her waiting for her body to be ready to come home.

Last week was stressful! Because of some blood work results, they started thinking she was born with a congenital liver issue. If this were the case it would’ve needed to be repaired with yet another major surgery. THANKFULLY after lots of extensive testing (one that included sedation and a long needle going through her liver into her gallbladder ) her liver is fine and another surgery is not needed!!

She is about halfway up to her goal for the total amount of milk she needs which is still being given through a ng tube. I’m hoping in the next 2-3 weeks we will be able to start giving her the feeds with a bottle or better yet…having me be able to nurse her. I’ve been pumping this entire time and let me just tell you…pumping SUCKS!! Especially when I’m home trying to spend quality time with Radek and the alarm goes off for me to pump (something I need to do every 2-4 hours) so I have to stop what I’m doing and sit there for 15 minutes while trying to explain to a 2 year old why there is milk coming out of my boobs! lol Although he does LOVE being able to push the buttons on the pump!! Having to pump while I’m home is just one of those constant painful reminders that Peyton isn’t here with us.
On a good note…she is gaining weight and looks great. My goal is to have her home with us by Thanksgiving, hopefully her body will cooperate with that!!

Recently I’ve made it a point to try and live life for Radek’s sake. I feel as though he has been missing out on so many fun things because of this situation. He didn’t even get to go to the beach this summer! So this weekend I was determined to take him to the pumpkin patch and although I had to take him by myself AND even though it was hard for me seeing all the families with their little babies along with them, we still ended up having a really good time!

Here’s some pictures of the pumpkin patch AND new ones of Peyton!!

Her Room is READYYY!!

2011-10-07T12:30:00.000-04:00

Thankfully everything has been going in the right direction with Peyton since her reconnection surgery “knock on wood”. Even though it’s been a slow process getting her adjusted to her feeds, I FINALLY have that feeling of hope and excitement back that she IS in fact going to be home soon.

They are increasing her feeds really really slowly just to make sure her intestines are ready to handle them. As far as the time frame of getting out of here I am thinking 3-5 more weeks depending on how her body cooperates!

Earlier this week while I was home I decided it was time to not only go in her nursery (something I haven’t been able to do for many weeks now), but I actually had the desire back to FINISH decorating it! So this week Shane, Radek, and I finished our little princesses room and I am confident that she’s gonna LOVE it!!

Rad and Dad making everything perfect for their favorite girl!

77 DAYS

2011-09-29T18:01:00.006-04:00

Peyton is 11 weeks old today. This is a such a bittersweet thing for me. Yes, I’m glad that she’s getting older, growing stronger, and most importantly getting healthier, but it still makes me sad thinking about how she’s been stuck in this room for 77 days now.

Although I’m trying to stay positive, I’m getting really frustrated. I spoke with her team of doctors yesterday and they told me that the possibility of her having to be here for another month MAYBE TWO is not out of the question!! Her getting discharged all depends on how her body adjusts to the feeds.

They started feeding her this Monday and are increasing the amount VERY slowly. Right now they are only feeding her via a nasogastric tube (also called an ng tube)- which is a tube inserted into her nose and goes down to her stomach. She is being fed this way so they can give her a continuous feed of a very small amount of breast milk to just coat her intestines and see how her body processes the food. They started with 1ml going through the tube every hour for the first two days, yesterday they increased it to 2ml, and today they increased it to 3ml. They even talked about letting her get a bottle tomorrow along with the ng tube feedings. Thankfully so far her body seems to be handling the feedings well, but we will see what happens as they increase the amount.

Here are some pictures of her pre and post surgeries.

This picture is the day before they rushed her in for emergency exploratory surgery to find out what was going on with her belly. Not only is her belly completely distended, but the look of agony on her face is heartbreaking…I can’t even imagine how much pain she was in!

This is a picture of her ileostomy, The red circle on her belly is her actual intestine connected to the outside of her stomach. The other half is under the gauze.

This is what her belly now looks like-8 days after her reconnection surgery. They said the scar will get much thinner as it heals. The tube on her upper chest is her broviac. This is currently how all the nutrients she needs is getting into her body.

and here’s some fun ones I took of us today while we were bored…

Surgery and Seizures

2011-09-21T15:50:00.002-04:00

Monday was the big day..Peyton is FINALLY fixed!! Thankfully her surgery went according to plan. The doctor said everything looked the way it was suppose to and they were able to successfully reattach her intestines. I thought or at least I was hoping the worst was over..little did I know the surgery was going to be the easy part! Her recovery has been brutal so far!! I did NOT prepare myself for the pain she would be in. Yes, they have been loading her up on pain killers, but she still has breakthrough pain. At the moment I can’t think of anything worse than seeing my baby laying here in agony. Even when the pain killers are doing their job, it still makes me sad to see her because she’s completely sedated and motionless. It’s hard to believe that her motionless body is the same baby that just days ago was alert, looking around, and responding to my voice. Now when she opens her eyes she just stares off into space not even noticing me standing there. I keep trying to remind myself that this is only temporary and before I know it she will be back to my lively, curious, super observant, content little baby.

Seizures

Unfortunately yesterday morning the day after surgery Peyton had 2 seizures. This was something I was completely not expecting, but than again I wasn’t expecting ANY of this! Normally seeing this would of devastated me, but with everything I’ve been through these past almost 10 weeks it really didn’t phase me too much. Yes I shed a couple tears upon witnessing this, but for the most part I’m pretty much numb to everything at the moment.

The doctors were thinking and hoping the seizures were caused from her sodium and electrolyte levels dropping after her surgery. Even though they believed they knew the cause of them it was still quite an intense day. It seemed as if a different doctor was here every 5 minutes asking me every little detail about the seizures…I probably repeated the events at least 15 times. Her arms and her legs shook very mildly, her eyes were moving around and she was drooling out of the side of her mouth.

Luckily the nurses were able to stop them with a medication they explained was like a baby form of valium. They ran tests including a head ultrasound to make sure the blood thinner she’s on wasn’t causing bleeding in her brain “THANK GOD it wasn’t” and they ordered an EEG. The EEG consisted of 24 hour video monitoring of her and about 50 wires connected to her head to monitor her brain. They also wanted to put her on anti-seizure medication, which is were my mommy instinct kicked in and I wouldn’t consent to because I didn’t think it was necessary. Even after a neurologists and a neonatologist tried to explain to me that they highly recommended putting her on it I wasn’t convinced it was necessary. I felt as though they had a possible cause for the seizures, which was the low sodium and electrolyte levels, and they were able to stop them with the baby valium. The way I looked at it was if they were treating her by giving her more sodium AND they were treating her with the anti-seizure medication then how would we know which one was working to prevent any further seizures. Thankfully, I feel like I made the right choice. Her sodium levels are normal and she hasn’t had a seizure since yesterday morning!!

Now I’m just waiting for her body to heal up so we can ease her off the pain medication and I can hold her in my arms again!!

Peyton recovering from her second surgery

2 Days!!!

2011-09-17T13:26:00.002-04:00

Peyton’s surgery is scheduled for this Monday!! I can’t believe the day is almost here! I’ve been waiting for this day for 9 weeks now-today is exactly 9 weeks from her last surgery. It is scheduled for 7:30 Monday morning, the first surgery of the day! I have so many mixed emotions about this…Yes, I am thrilled they are fixing her, but with that I have the overwhelming anxiety of my 9 week old 7lb little baby going in for her second MAJOR surgery!!
The purpose of the surgery is to reconnect her intestines back together. Yes it’s a great thing that they are doing this, but I'm also nervous about what is going to happen.   We are soon going to find out what her future is going to hold. How her body is going to work. If her body is going to be able to function with almost half of her intestine gone-they removed 80cm she has 99cm left. Not to mention WHAT the doctor is going to find when she opens her up. When she did her last surgery she left some of the intestine that wasn’t quite 100% healthy hoping that it would regain blood flow and revive itself.

The things I’m dreading the most are….Saying goodbye to her before they take her to surgery. It’s going to be so different then last time.   When she went before I didn’t really know her, not to mention she was in severe pain so it was such an emergent situation that I didn’t have time to think about it! The thing I’m dreading the absolute MOST is waiting in the waiting room while they are doing the surgery…I will try my hardest to NOT to let my mind go crazy with what could be going wrong!! I’m also dreading seeing her after surgery…she will be completely sedated and most likely have a breathing tube down he throat, pretty much how she was after her first surgery. It was different then though, like I said before I didn’t really know her…Now her and I have such a strong bond that it’s going to kill me to see her like that!!! They told me she will probably be like that for the first 2-3 days….The last thing that I’m dreading is the waiting for her belly to heal. Depending on how quickly her body starts healing will depend on when we can start feeding her and how fast we can increase her feeds. This all will be the determining factor for when we can FINALLY go home.

Along with all the anxiety we've been dealing with about this upcoming surgery, Rad ended up getting sick this week and is now on antibiotics.  Knowing he doesn't feel good makes it even harder to be away from him   As if that wasn’t bad enough, they stopped Peyton's oral feeds at the beginning of this week to rest her intestines for her upcoming surgery, so even though she is getting her nutrients intravenously her belly isn’t getting any food in it so she has been MISERABLE and starving.

Starting Monday I really hope things start turning around, I don’t know how much more of this we can handle!!

I <3 Her!!

Hanging onto Sanity by a Thread!

2011-09-06T14:12:00.002-04:00

As this hellish journey continues each passing week is getting tougher and tougher. I try and remind myself that life will be normal again soon, but to be honest I can’t even picture a normal life at home with my family anymore. When I go home to spend time with Rad I no longer go into Peyton’s nursery because it hurts too much. Just looking at all the baby stuff around the house makes my stomach sink . The swing, the pack and play, the bouncy seat…all the stuff that I got out not long ago with such anticipation and excitement. I cleaned everything off and set everything up so they were all ready for her to use after she was born. They are now sitting around empty, collecting dust, and just a constant painful reminder of her not being home with us.
I honestly don’t even feel like she’s mine anymore. There was once a time that I envisioned all of us being home together, now it doesn’t seem like it’s ever going to happen. The rollercoaster of emotions while being in this place is really starting to take a toll on me…One day everything is going in a positive direction and the next everything goes wrong and it feels as if all the progress she just made got erased and we are starting from scratch.

The hardest thing thus far is being away from Radek. He has changed and matured so much in these past couple weeks. He can now hold a complete conversation, has new foods that he likes, and a whole new routine from what I am use to. I realized how out of the loop I was the other day when I had to ask my husband if he likes ketchup on his hotdog…It may seem like such a simple thing, but it killed me because as his mother I should know that!!! I really hope that he and I get our bond back once our life gets back to normal…I miss everything about doing my mommy duties for him. I even kinda miss his treatments!! Although they are a pain, it was our special time together!!!!

I try and remind myself daily that as much as this situation sucks it could be so much worse. Shane has been AMAZING through all of this!! He is working full-time while taking care of Radek AND doing such an awesome job at both! Everyday he gets Radek up, dressed, does his treatments, feeds him breakfast, drops him off at the babysitter, goes to work, works all day, picks him up from the sitter, feeds him dinner, plays with him, does his nighttime treatments, gives him a bath, puts him to bed and does it all over again the next day!! Just typing all that exhausted me..I really don’t know how he does it, but I am forever grateful to him for making this so much easier on me.
My mom along with a couple other close friends and family members have also been an amazing help! I really don’t know how I would be getting through this without them.

So a BIG THANK YOU to Shane, Brittany, Beth, Rachel, and my Mom!!!

13 Days!

I know I had previously posted that P’s reconnection surgery was scheduled for the 21st, but it’s actually the 19th. That means we are 13 days away. I CANNOT wait until she is fixed and we can get the heck out of here!!!!!!!!!

and yet ANOTHER setback!

2011-08-30T16:15:00.000-04:00

I once again have very little positive things to blog about! I was planning on this weeks entry being about FINALLY having a date for her upcoming reconnection surgery-which is officially scheduled for Monday, September 21. This to me is gut wrenching because it seems soooo far away….yet so close! It’s such an exciting thing...to think about her being fixed and normal and finally having things moving in the right direction to get us home. It’s also extremely nerve wracking knowing she is going to be having another MAJOR surgery just weeks away!

However, unfortunately this weeks big news is yet another setback due to a blood clot that recently formed around her picc line.

A couple days ago I noticed that her hand was swollen. After having it looked at by several people they decided to let it go for a day or two and see what happens. Last night I noticed not only was her hand still swollen but her whole arm was. They then ordered an ultrasound and that’s how they found the blood clot.

Here's a picture of her swollen hand.

At this point the picc line needs to come out because of the clot. Since it was her third one the doctors decided they need to try something else to get her nutrition because the piccs, which are suppose to last long term are obviously not working. In place of the picc line they decided to place a broviac. This does the same thing as a picc only it’s located in the chest instead of the arm and to insert it is going to require 3 MAJOR things that I’m NOT looking forward to….a trip to the operating room, anesthesia, and a breathing tube “because of the anesthesia”.
They are going to need to make an incision in her chest, place the tube, and stitch it into place. This will give them central access to give her the hydration and nutrition she needs. It’s essentially doing the same thing as her picc only it’s more secure and the veins are a little bigger in her chest than her arms so hopefully this will last and won’t be an issue!

SoOOOOOOoooo now not only do I have to worry about my baby girl going under anesthesia once again, I have to worry about this lingering blood clot in her arm which she is now going to require a blood thinning medicine that needs to be dispensed twice a day for several months via a shot. There was a day not long ago that I use to cringe at the thought of having to take Radek to the pediatrician for his immunizations, now I have to learn how to give my baby girl shots twice a day for this blood clot so it doesn’t travel through her body and kill her.

I honestly can’t believe this is all happening to my poor little innocent baby. She is 6 weeks old and the list of things done to her is growing so quickly. On top ALL the things she’s gone through thus far….she now has 3 picc lines and a broviac to add to it. I don’t even look at her as a little baby anymore. Looking into her eyes it’s almost as if she knows what’s going on. Even the doctors today who were talking to me about everything pointed out how she was looking around at them while I was holding her as if she was understanding what they were saying. I have so much respect for her. She truly is the toughest person I have ever met!!!

Wordless Wednesday

2011-08-24T15:15:00.000-04:00

Never Ending Setbacks!!!

2011-08-22T22:26:00.002-04:00

I know I have been slacking on blogging lately, but to be honest I am pretty much too frustrated with everything at this point to write most days..I barely have the energy to call or text my friends and family to let them know what’s going on!

It seems like the minute I get excited about how things are going, the very next day everything starts going wrong and we are back to square one! Not only is it agonizing watching my 5 week old daughter go through this, but being away from my family for such long periods of time is really starting to take it’s toll on me.

Peyton’s still not gaining weight like she needs to so they have decided to reinsert a picc line for her so she can get additional nutrients intravenously along with her bottle feedings. Her bottle feedings consist of breast milk mixed with fat lipids. They add the fat lipids to give her even more calories in hopes she will fatten up!!

THE PICC LINE NIGHTMARE!!

They sedated her with morphine on Friday and tried to insert the picc line by her bedside, but after almost 2 hours of poking and prodding at her they unfortunately weren’t successful.
Today they took her to interventional radiology to have it inserted. This requires even heavier sedation and they do a continuous xray so they can see where the picc line is going as they are feeding it through her arm.

They successfully got it in HOWEVER it fell out tonight after only a couple hours of having it put it!!! It was quite traumatizing for me with the amount of blood that was coming out of her little arm. SO now tomorrow she has to go back there again for more sedation and more xrays to have it reinserted. I honestly can’t even cry anymore…I just feel numb at this point!

Thankfully Radek seems to be holding up really well thanks to the help from my AMAZING friends and family. I honestly can’t even imagine how much worse this situation would be without their help!

I have lost count of all the xrays, heel pricks, and needle sticks she’s had, but I’m pretty sure for each one the number is close to if not over 100!!

In it for the LONNGG Haul!

2011-08-10T11:43:00.003-04:00

We are now going onto week 4 of this place and I’ve finally come to terms with the fact that Peyton won’t be coming home anytime soon. I was previously driving myself crazy by going day to day convincing myself that “tomorrow” is going to be the day they let us go home and everyday ending up in tears and completely disappointed.
She is still having a really hard time putting on weight so we are now trying a new method. They were holding off on doing this hoping she would gain weight without it because it's time consuming, messy, and we can't go home while doing it. It’s a method called refeeding. The refeeding process works by using the contents that’s currently being digested into her ostomy bag and refeeding it via a pump into the other opening of her intestine called the mucus fistula giving the lower half of her intestines the ability to absorb the nutrients as well. This will give her body twice as much of a chance to absorb the nutrients in her food and hopefully FINALLY put some weight on her little 5lb self. Since we had to resort to this in order for her to gain weight we won’t be coming home until they do her surgery to reconnect her intestines, which they won’t do until she’s at least 6 weeks old giving her body plenty of time to heal from her first surgery.

She is going to be 4 weeks old tomorrow and I’m guessing it’s going to be about a 2 week recovery process if all goes well…soooo it looks like P and I are going to be a residents of CHOP for another 4 weeks.
YES it stinks, but I figured at least we will be getting the surgery over with and I won’t have to worry about coming back here to have it done like the original plan was. I also figured since Radek has become somewhat adjusted to our new routine of Mommy and Daddy splitting up caring for him, it will be easier to leave it like this for now instead of coming home getting him readjusted to just have to throw off his routine all over again.

Now that I’ve FINALLY accepted and come to terms with my new “temporary” lifestyle I’m in a much better place mentally and emotionally.

Peyton WILL be fixed and life WILL be normal soon! I have to remind myself often that although my situation is difficult it could always be worse!!

Here’s some pictures of where P and I have been living.

This is the name tag on her bed that one of the nurses made for her…

Her room…

These are all the machines and medications and iv pumps she USE to be hooked up to…It’s crazy right?? All that for a 5lb baby!!!!

The most uncomfortable chair EVERRRR!!!! I pretty much spend allllll day long sitting here and most nights sleeping here!

This is the clipboard where I hang up Rad’s artwork and the encouraging notes from our friends. I also have a picture on here from when Peyton was born looking close to death. When I get frustrated and feel like this process is taking forever it helps remind me how far she has come.

This is what her room currently looks like. She’s stable now so she gets a REAL crib! Notice all the machines NOT there...just a small little IV pole! The scale at the bottom right hand corner is used for breastfeeding. I weight her before I feed her and right after and it calculates how much she ate.

Still Here and Still Frustrated!!

2011-08-04T23:29:00.000-04:00

Peyton’s finally up to her full volume feeds, which you would think would be awesome news…HOWEVER she hasn’t gained any weight and is still below her birth weight. So at this point I am beyond frustrated, I want to scream, and I have NO CLUE when she’s going to get out of here!!

From the discussion I had with her doctor tonight, she made it sound like it could be weeeeekss longer.

I honestly can’t even cry anymore at this point. We’ve been here for 3 long weeks already, I am missing my family like crazy, and I just realized I pretty much spent my entire summer in the hospital because I was here with Rad for almost 2 weeks in June…AAAHHHHHHH!!!!

Frustrated

2011-07-29T20:39:00.000-04:00

I haven’t updated on Peyton’s progress lately because their really hasn’t been anything to update. We’ve been pretty much at a stand still for the past 4 days. She’s still only eating 20cc’s, which isn’t even half of where she needs to be. We have to get her up to 35 before I can start nursing her and 50 before we can go home.

The issue we’re having is that her output is higher than it’s suppose to be. They calculate this by the amount she eats by the amount she digests and it’s suppose to be under 30%. P’s been riding the upper 30% lower 40% range. The numbers for this was (read paragraph below) getting worse instead of improving like it’s suppose to be. My 5lb 12oz baby now weighs 5lb 2oz.

I asked the doctors over and over again if we can start introducing enzymes to her, but they kept turning down my suggestion insisting that the volume of feed that she’s on isn’t enough to require enzymes. For me it makes no sense that they wouldn’t put her on them because the symptoms that she has with her malabsorbtion are the same exact ones my son had before he started taking them. Rad did not gain a pound until he started taking them, so how in the world do they expect her to gain weight without them??!

Well THANK GOD a doctor who specializes in GI came to see her yesterday and went with my suggestion about starting her on enzymes. She’s has now been on them for about a day and a half and not only has her output been decreasing, BUT she seems so much more comfortable, as in no more belly aches from her food not being digested properly!! I’m praying these enzymes are the key to getting her feeds up and getting us the heck out of here!!!!

This whole process has been so slow and frustrating and I’m really starting to feel the effects of my life being so dysfunctional lately. I miss Radek sooo much…It is truly agonizing for me being away from him for such a long period of time..especially since I’m use to being with him every second of every day!!

We’ve been doing this for 2 weeks now and although Shane and I have worked out a schedule, which consists of us switching out every 2 1/2 days so I can spend a day with Radek..I really don’t know how much longer I can do this to Radek.

BUT SERIOUSLY…How do you choose between your kids??? This is by far the hardest thing I’ve ever had to go through in my life…I want to be here so bad for Peyton, but I don’t want Rad to think I’ve abandoned him….I seriously CANNOT wait until this hell is over with, but if these enzymes don’t do the trick P’s going to be down here for a very long time!!!!

In the midst of our NICU boredom and the fact that Peyton didn’t get any newborn photo’s taken, her and I decided to have a photo shoot the other day and I have to say…She’s quite the lil model!

My Little Miracle Baby

2011-07-25T22:16:00.000-04:00

I am happy to report that Peyton is doing AWESOME!! I was able to start feeding her 2 days ago. They started her on a very small amount and are slowly working her up to a full feed.
We are currently halfway there…I’m hoping we have her on full feeds by Wednesday. They are also letting me start breastfeeding her tomorrow!! I’ve been pumping this whole time so I’m eager to see how this is going to go!

It really is a true miracle to see how far she has come in such a short amount of time...The doctors are completely amazed, they call her their little rock star baby!! If she gains weight and is able to handle these full feeds AND digest them properly, hopefully we will be out of here soon!!!!

The one set back I am praying doesn’t happen is that her body won’t be able to absorb enough of the nutrients in the food because of all the intestine they had to take out. We should know if we are in the clear by Wednesday or Thursday!

She truly looks amazing compared to what she looked like 11 days ago when she was born. She now looks like what a healthy thriving newborn is suppose to look like!!!

I can’t thank everyone enough for all the prayers said for her and all the kind and supportive words said to us!!

The Introduction and Progress Update

2011-07-22T23:10:00.001-04:00

Yesterday Radek FINALLY got to meet his baby sister. I wasn’t sure what to expect and prepared myself for it to go either way. Thankfully it went really well!! He was fascinated with her for about 5 minutes, his usual attention span, then went onto playing with his cars and trucks.

I am just happy that he now knows what all the hype has been about lately! He even asked if we could take her home, so I guess that’s a really good sign!!!

Rad’s initial meeting with Peyt!

He even picked out a present for her!

LOVE THIS PICTURE!!

<3 My Babies <3

He of course had to show her his cars and trains!!

Peyton’s Progress Day 8

I am happy to report that Peyton is officially breathing on her own!! They removed her from the ventilator on Wednesday, but kept her on oxygen for another day to make sure her lungs were ready. She's been oxygen free for over a day now and doing great!!!

We did have a minor set back though..They tried removing her from the warming lights above her bed Thursday morning, but unfortunately hasn’t been able to maintain her body temperature. We’ve tried it twice so far and both attempts were unsuccessful, so we will just have to give it another try tomorrow.

We also haven’t started feeding her yet because he belly still hasn’t totally recovered from the surgery. I have my fingers crossed that we will be able to start that in the next 2 days.

This is definitely going to be a long slow process and I don’t foresee her coming home anytime within the next 2 weeks.

Here’s some pictures of Peyton

SMILE

LOVE HER

Chillin in her lil bed

Peyton's AMAZZINGGG Progress!!!

2011-07-20T12:21:00.000-04:00

I am happy to report some REALLY REALLY good news about Peyton. She is off the bilirubin light ANDDDD she is coming off the ventilator this afternoon!!!!!! So now she can see since she doesn’t have the goggles on for the light, she can breath on her own, she can make little baby noises since the vent tubes not down her throat, ANNDDD I can hold her allll the timeeeee whenever I want!!!!!!!!!!!

It’s been 6 days since my world turned upside down and for the first time in those 6 days I can’t stop smiling. I’m home spending quality time with my favorite little guy, Peyton’s improving and I get to take him to see her tomorrow!!!

The doctors talked about possibly introducing her to food in the next day or two “she’s been being fed nutrients through a picc line” and depending on how that goes and how long it takes her belly to adjust will depend on when we get to take her home. At this point, I’m not even worried about that, I’m just enjoying every minute of the current progress she has made thus far!!!!!

Peyton is by far the strongest toughest baby I have ever seen in my life!! Three days ago I thought there was a chance I wouldn’t be able to bring her home because I didn’t think she would survive and now in three short days she has pulled through tremendously!!!

Thinking about all the things she has gone through already in her 6 short days of life is both heartbreaking and amazing!!!

Tomorrow I’m bringing Radek to meet her and I CANNOT WAIT!!!! I’ve been talking about her to him since I found out I was pregnant with her trying to get him prepared. I even bought him a little doll that we named Peyton to get him ready for his big brother duties and as you can see from the pictures below I think he’s going to do great!!!

I’m hoping he can avoid using her as a jump for his monster trucks at least for the first couple weeks

little by little

2011-07-18T23:33:00.000-04:00

I wanted to give an update on Little Miss Peyton. Thankfully she IS improving! She’s still on the ventilator, but they were able to lower the settings down 3 times today. They went from 40-25. They lower it down in increments of 5 and once she gets down to 10 they will hopefully be able to remove her from it.
I have my fingers crossed that it will be gone by Wednesday.

She is also still on the bilirubin light, which I call her little tanning light. I HATE that she’s on that because she has to wear those stupid goggle things over her eyes all the time and I can’t see her little face.

On another good note, I was able to hold her again today for the 2nd time. It was quite a process because it took 3 nurses to help me pick her up and walk over to the chair with her because of all the tubes and equipment she’s attached to. Then it took them about 5 minutes to reset and replug in all the equipment so I could sit there with her! It was still wonderful though just having her in my arms. She LOVED being held and was so content and I absolutely LOOOVEEDD holding her. She looked so peaceful!!

Shane and I are switching out tomorrow so I’m going home to be with Radek and he’s coming here to stay with Peyton. Although I hate the fact that I won’t be here watching over my little princess, I am really excited to go home and spend some quality time with my favorite little man!!

I have my hopes up that when Shane I switch shifts on Thursday and I go back down to be with Peyton that I can bring Radek with me and he can finally meet his sister. I will only do that though if she is off the ventilator and the tanning light. I really don’t want him to see her with all that stuff on her.

Hopefully the next time I post we will be ventilator free..I seriously can't wait for that!!! It's so sad because right now when she cries she can't make any noise so her face looks like she's crying and she has tears in her eyes but there isn't any sound coming from her mouth. It is by far the saddest thing I have ever saw!!!

Yesterday.....

2011-07-17T17:13:00.001-04:00

Yesterday I was discharged from the hospital. Thankfully they allowed me to leave a day early so I could go and see my baby girl. It was such a surreal thing walking out of my hospital room alone without my husband or baby. To most people this is such a happy time, for me this is turning into my own personal hell!

I was so happy to be able to go home for a little and see Radek. Walking into my house and being greeted with his smile took all the stress and anxiety away for a couple minutes. The joy of that was short lived though, after seeing him I had unpack my hospital bag from my admission and repack it to go stay with Peyton.

My dad who was the one who picked me up from the hospital also drove me down to The Childrens Hospital. Let me just say...An hour and a half drive 2 days post c-section SUCKS!!!!

On a good note I was FINALLY able to hold my baby girl.

It was really hard walking up to her and seeing her attached to all the wires. They had to unplug and disconnect about 10 tubes and wires just so I could hold her. I can't even describe how hard it is to have to ask people if you can hold your own child...how hard it is to see her laying there with all the tubes and wires connected to her...how hard it is as her mother to not be able to do anything to help her!!!

Upon holding her I knew she was in major pain. Everytime you would move her a certain way or even just touch her belly she would cry. I soon found out that they were going to need to take her into surgery. So after being able to finally see her they took her away 2 short hours later for surgery.

The surgery took a little over 2 hours and although it was good they did it, I'm still heartbroken at the outcome. Her belly ended up twisting around and part of her intestine died so they had to remove over 1/3-1/2 of her small intestine. They also couldn't reconnect the pieces of her intestine right away so she is going to need a colostomy bag "a bag that will collect her poop" for the next 2 months. I know that the bag is only temperary, but it's still just as devistating!! Another really upsetting thing is that in 2 months down the road when they remove the bag and reconnect her intestine, not only is it going to be another surgery for her, but it's going to require another lengthy hospitalization.

Last night I couldn't stop crying, I miss Radek soooo much!! I want to be with him, but I want to stay with her....I seriously can't believe this is happening!! Three short days ago I wasn't expecting Peyton for another month!! These past three days have been pure hell!!!!!!! I just pray that Peyton can pull through this, she has a very long rough recovery ahead of her. I also pray that I can figure out how to be there for Radek through all of this...I hate that I'm so far away from him...I miss him so so so much!!!!!!!!!!

My baby girl post surgery :(

Right now I'm trying not to focus on the fact that my daughter had almost half her small intestine removed "something so important for absorbing the nutrients in food" something that most cfers already struggle with!! I'm also trying not to focus on the fact that my baby is going to have a colostomy bag, even though I know it's very temporary it is still killing me. Not to mention the definite hospitalizaton AND surgery down the road...that is also breaking my heart!

One day at a time is all I can "try" and do at this point. Peyton hasn't really showed much improvement today, she's still a little down and out from her surgery. I'm going to give her till Tuesday to recover then I'm going to start getting my hopes up for some major progress!!

I can't believe how much I love her already!!!

Peyton Elizabeth Has Arrived!!!

2011-07-15T23:31:00.004-04:00

5lbs 12oz

As I'm sitting here typing this, in the craziness of everything that's been going on, I just realized I don't even know how long she is :(

We have been blessed with Peytons presence 5 weeks earlier than her due date!

Here's the story...

As most of you know, I was in Minnesota for a long weekend attending the wedding of my very good friend and fellow cf mama Jen. While I was out there I noticed a decrease in her fetal movement. I tried not to worry about this too much and told myself it was probably all in my head and blamed it on my schedule being all messed up from traveling.

Tuesday after being home for almost 2 days I was still not really comfortable with her lack of movement and decided to call my prenatal specialist to see if I could get in for an ultrasound a week earlier than my scheduled appointment just to check on her. When I called the secretary informed me that one of the doctorswas out on vacation and they were already completely overbooked. I pretty much just put this whole issue on the back burner then because I had a couple false alarms with Radek and I really didn’t want to make a big deal out of “nothing”. I mean I have never heard of anyone having any pregnancy issues due to lack of fetal movement and just put it in the back of my mind for the rest of the day and into the next day.

I spent all of Wednesday cleaning and organizing my entire house and getting Peyton's room set up. After being on my feet for over 10 hours I FINALLY sat down and realized that I had not felt Peyton move one time the entire day…This got me a little worried so I tried eating some ice-cream hoping the sugar would get her moving around, but it did nothing. I called my uncle who is an OB and asked him for any other tricks he knew of to get her moving around. He told me that I needed to go in and get her checked out. I was really hesitant about going in because I honestly thought I was just overreacting AND I was tired and just wanted to go to sleep. I ended up convincing myself to go in to get her checked out because I thought to myself

“if something really is wrong with her and I don’t go in, I will NEVER forgive myself"

THANK GOD I DID…If I wouldn’t of went in she would’ve died!!!!

I went solo because I didn’t want to bother someone to come watch Radek. I was thinking I would only be there for a few hours, told everything was ok and be sent home. It was pretty late so I had to go in through the ER and was escorted up along with 2 other woman who were in labor. This made me feel even more foolish. These woman were in actual pain and here I am just being paranoid!!

Well I went in, they hooked me up to the monitor and her heart rate came on the screen of 160. I was immediately relieved upon seeing this and was ready for them to tell me I could leave. The nurse informed me that the doctor would be in shortly to see me. After waiting for over an hour I got up and was ready to just leave. I figured I didn’t need to be there because she had a good heart rate and the unit was obviously busy with people who were in actual labor. I wasn’t trying to be rude or pushy, I just really didn’t feel as though I needed to be there.

After informing the nurse about my decision to leave she talked me into staying for a little longer and keeping the baby hooked up to the monitor. I agreed and as she rehooked up the things to my belly to monitor Peyton, Peyton’s heart rate all of a sudden decelerated down to 90, which anything under 110 they consider way to low. That was enough for me to finally realize that something was definitely not right and I needed to stay and figure out what was going on with my baby.

They kept me overnight to monitor her, gave me sleeping pills so I could rest, and off to la la land I went. In the morning I awoke to quite a furry of people around me. They immediately rushed me in for an ultrasound. While getting the ultrasound we discovered not only did she have a meconium blockage, but they gave her a score of 2 out of 10 which is horrible and told me they had to take her out right away.

Everything seemed so surreal..I was just waking up from being on sleeping pills, I was alone because Shane was home with Radek, I seriously felt like I was dreaming!! I mean I wasn’t expecting her arrival for an entire month!!! I called Shane and told him to get there ASAP. While Shane was in route they informed me that I would be put to sleep during my c-section because they didn’t have time to do the blood work needed for a spinal tap, this meant that Shane wouldn’t be allowed in with me for the birth of our daughter.

I was being wheeled in right as Shane arrived, the poor guy was being completely overwhelmed with all of this just like I was..I mean we went from not expecting a baby for a month to expecting one in a couple of minutes!! After informing him that he couldn’t go in the room with me he completely lost it and started bawling..That probably broke my heart more than anything. Thinking back on everything I honestly can’t believe how much Shane and I have been through already as parents. We have gone through so much and our oldest one is only 2 years and our youngest is only 2 days!!!!!!!!!!!!

I was able to meet Peyton shortly after waking up from my c-section which I barely remember because of all the drugs I was on, but I tried so hard to take it all in because I knew she would be leaving soon to go to the children's hospital. I was trying so hard to fight the effects of the drugs making me want to pass out and enjoy the moment. I couldn’t hold her, but I held her hand and her fingers, I rubbed her face, and I kept telling her that I loved her.

My baby girl is now almost 2 days old and still has not been held I can’t wait to hold her against my chest and smell her, and listen to her little baby coos, and rub my cheek against hers.

As I sit here alone in my hospital room it looks like a baby girl should be here…but unfortunately it is empty :(

My little buddy that was attached to me for the past 8 1/2 months is now almost 100 miles away from me. My husband whom I lean on to get me through tough times like this is with her, supporting her. But that’s ok…she definitely needs him more than I do at the moment!

It’s weird though..I’m not use to sharing him with another girl :)

On a brighter note…..
My cousin Adam and his very pregnant wife Rachel came to visit me last night. Rachel’s due date is tomorrow, so when they got here I actually had a talk with her unborn daughter Addison. I told her that I would really appreciate it if she made her arrival that night because I was all alone and if she came early I would have people to hangout with all night…WELLLL Rachel’s water ended up breaking in the bathroom of my hospital room about 5 minutes after that!!!! Talk about crazy!!!! So thanks to Addison my night last night was not nearly as sad and depressing as it could’ve been!!!!

Peyton’s Status
Peyton has been dodging the surgery bullet since arriving at the children's hospital. She has been passing the blockage little by little. She is still not in the clear, but the fact that she’s having bowel movements is great!!

They unfortunately are needing to do a blood transfusion because of all the blood they’ve taken out of her, I guess her little body isn’t able to reproduce it fast enough.

The BEST news thus far is, they thought that Peyton might have brain damage because of how slow she was responding to everything. Not only is her responses improving more and more, they did an MRI of her head and didn’t find any bleeding or see anything unusual, so I’m praying we are in the clear of that!

THANK YOU
I just want to thank everyone for the uplifting words and messages that you’ve been sending to me these past couple days. It’s really helping me get through this whole situation much more easily!!!

Just In....

As I was typing this entry Shane sent me this picture of Peyton without a breathing tube for the first time, which means she is breathing all on her own!!!!!!!! He also informed me that they did an enema and LOTS of poop came out…Hopefully that means the blockage is gone and she won’t need surgery!!!!!

I will keep you all posted!!!!

Minnesota

2011-07-12T19:44:00.002-04:00

This weekend I traveled to Minnesota to attend the wedding of Jen and Casey Groettum, Jen is also a cf mama like myself. Our friend Margaux, a cf mama too, came from California for the wedding and was my roomie for the weekend. Not only are we all 3 cf mama's, but we are all the same age, AND our sons were born within months of each other!

Although we were brought together “thanks to facebook” under unfortunate circumstances, we’ve developed quite a bond and I would consider them some of my closest friends!! I had an absolute blast with them and am already looking forward to the next time we get together!!!!!!

They are also mommy bloggers-if you click on their name it will direct you to their blog.

Jen and her little CF Fighter Gavin

Margaux and her little CF Fighter Ben

This is the 3 of us the night Margaux and I arrived

rehearsal dinner

Here’s some pictures from the wedding

The Groettum Family!

Gav and Me...I was VERY excited to finally meet this little rockstar!!

34 weeks and stilll rocking the 5 inch heels baby!!

Peyton and I tearing up the dance floor!

LOVE LOVE LOVE these girls!!!

aaannnddd last but not least..The corn shaped tower that Margaux and I pulled over to take a picture of...AND it even lights up at night!!!! lol
and here I thought I lived in the “country”

Rad’s Big Boy Room

2011-07-05T14:09:00.002-04:00

We recently transformed Rad’s room from a nursery to a big boy room. I was a little nervous at first about him no longer being in a crib, but to our surprise he actually LOVES his big boy bed and his new found freedom and sleeps MUCH better!!!

The Before

The After

I was trying to get a picture of Rad posing in his new room…You gotta love the cooperation of a 2 year old!!

Next up…Peyton’s Room!! Her furniture is getting delivered tomorrow so hopefully we can get it completed soon!!

32 Weeks 5 Days

2011-06-28T14:43:00.000-04:00

With Peyton

I'm still feeling great!!!

Rad’s recent illness and hospitalization set me back a “little bit” with my running, but I’m happy to say I’m still going at it…Don’t get me wrong I do have my days where I think to myself “this is the LAST day I’m doing this” but than I wake up the next day and feel great and am able to bust out 2.5-3 miles!!

I can't say enough how being active during this pregnancy has helped me eliminate a majority of those nagging pregnancy aches and pains! Even on days I don’t feel like peeling myself off the couch, it’s amazing how much better I feel after I run..BUT I do have to be careful about how much energy I use exercising because I’ve made the mistake on several occasions of not leaving enough left over to play with and entertain Radek and let me just say….that makes for a VERY LONG NIGHT!!!!!

32 weeks with Radek

This is the last pic I have of my pregnancy with Radek. I felt so disgusting I refused to take another pic after this point!!

Peyton 32 weeks

Radek 32 weeks

Peace Out PICC Line!!

2011-06-27T22:44:00.000-04:00

I am MORE THAN happy to say that Radek had his PICC line taken out today!! It wasn’t scheduled to come out until tomorrow, but I pushed to have it taken out a day early for several reasons. 1. I was completely sick of it! "BUT also knew it was ready to come out bc techinically I was sick of it from day 1"
2. The adhesive on the dressing was coming loose, this meant it would’ve had to have been redressed to hold it in place and keep it clean until tomorrow. A new fresh dressing would’ve made the removal process that much more agonizing for Radek because it would've been stuck like glue to his arm!
ANNDD 3. Radek has a VERY persistent Mama who knows when enough is enough and pretty much didn’t give the clinic any choice but to take it out today!!
I truly felt it was time to remove it, he is 100% better…He no longer has a cough and he is no longer short of breath and easily winded when playing.

Too be honest…I couldn’t fathom having him on antibiotics another second longer than he needed to be on them..He has already been on them for over 5 weeks AND lucky for us Rad has an amazing doctor that agreed to allow us to come in early and have it taken out.

Rad's little body can FINALLY get the much needed rest that it more than deserves!!!!

This is what the picc line looked like inside his arm…

This is the PICC line from the outside of his arm after they removed it today…I like this view MUCH better!!!

The TOTALS from ONE week of being home on IV Meds!

We administered 42 doses of medication "that total is JUST for the IV meds"
He spent 28 hours hooked up to IVs
7 hours hooked up to his vest and nebulizer!!

Keep in mind…these are not including the first week he spent in the hospital. It truly is amazing what these CF fighters go through!!!!

I really hope we don’t have to deal with anything like this again for a VERY LONG TIME!!!!!!

It's just NOT fair!!!!

2011-06-23T19:23:00.002-04:00

Please excuse me while I vent........
I am seriously at my breaking point. How can a two year old be expected to deal with all the crap that Radek has had to deal with lately??!!! It’s NOT fair!!!

It’s not fair that THIS is what needs to be injected and inhaled in his little body within the first hour and a half of waking up, which is only the first of FOUR doses!

No person on earth should ever look like this let along an innocent two year old!! This is Rad hooked up by his face, his chest and his arm!! The poor kid has tubes everywhere….As a mother seeing your child like this is heartbreaking, it’s NOT FAIR, and it freaking sucks!!!!

The picture below is the iv balloon thingies "my given medical term for them" that dispenses the medication into his veins. It’s much easier than the big loud pumps they have in the hospital. No electricity needed...the pressure from the balloon dispenses the medication into his body, but as easy as it is, NEVER in my life did I ever picture myself injecting my child with medication like this!!!!

It’s not fair that he has to have this picc line attached to him making him unable to swim, bathe, and even go outside and play because he sweats too much making the adhesive come off! “Even Dudley looks sad for him in this picture”

It’s not fair that he has such bad diaper rash from these harsh antibiotics that he screams, yells, and cries “no mama please no” while I’m trying to change his diaper and that’s WITH the large amount of yogurt and probiotics I’ve been giving him!!

It’s not fair what this little innocent child has had to endure in such a short amount of time already…but he is still smiling and seems completely unfazed! I cannot say enough how honored and proud I am to be his mommy..He truly is amazing!!!

I know it’s going to get better. I’m just really frustrated right now..I haven’t slept in weeks because of the start of this "current" illness almost 4 weeks ago, then his hospitalization, and now being home and waking up at all hours of the night for his iv’s! I’m physically, emotionally and mentally drained at this point!
I can’t wait to have our “easy” life back consisting of two simple breathing and chest therapy treatments during the day!

Home Sweet Home

2011-06-21T16:53:00.000-04:00

Thankfully Rad was discharged from the hospital yesterday. I can’t even begin to explain how good it feels to be home with him…Even though we were only there for 8 days “a relatively short stay for a cfer” it was loonggg enough for us!!
He is still on the medications and treatments given to him at the hospital, but luckily I was able to take a class and learn how to do everything he needs from the comfort of our own home!! I pretty much had to learn some serious nursing skills in about an hour long class...Needless to say I have NEVER paid such close attention in a class in my entire life!!!

It feels so good to have him back for only me and his Dad to take care of and to not have to deal with all the strangers touching him and poking at him at ALL hours of the NIGHT and day. The night interruptions are by far the THE WORST part of a hospital stay. It is soooo hard to get any rest with the beeping of the iv’s, the nurses coming in and out of the room, AND that’s WITH the restrictions I put on regarding who’s allowed in and what they are allowed to do while he’s sleeping!

Although it really stinks being hospitalized..We still managed to have some fun times and made some special memories!!

He played with his beloved cars ALLLL DAYYYY LONG!!!!

This is his Mimi “my mom” and him playing in his tent…

I was so bored at one point I painted his toe nails…and YES his father was thrilled!!

He even painted his Daddy a Father’s Day card!!

I forget to get a picture of the end product, but I did manage to get one of MY end product that I had the lovely job of cleaning up!!

The MOST FUN we I had was going out on the 6 hour day pass. Although we were limited to what we could do since I didn’t know they allowed this weekly special treat and didn’t have my car there, we had to settle for walking around and shopping near the hospital “and YES it was torturous for me to have to go shopping”!!

Even though our day was limited to shopping “not the best way to entertain a 2 year old” he still had a blast!! I was “that” mom with the crazy kid running around..the one that you think to yourself “who would let their kid behave like that in public?” he was climbing under clothing racks, running around the restaurant “we did eat outside so it wasn’t too obnoxious”, but I for once DIDN’T CARE!!!

I didn’t have a stroller, but lucky for Rad I found this really cool fire truck buggy thing the hospital had..Far from ideal for shopping around the sidewalks of Philadelphia, but Rad loved it and it was better than nothing!

Our first stop was a haircut...Since he has been so sick he was way overdue for one...When you look good, you feel good…right?!!

the finished product…such a stud!!

He even learned how to use and became obsessed with my camera while there..These are some of his masterpieces!!

ANDDD YES he took the pic below and YES I had to crop it..But I have never laughed so hard!! He didn’t have a diaper on at the moment because he had really bad diaper rash “thanks to the harsh antibiotics” so he was laying on the couch with a towel covering up the goods waiting for the nurse to bring in diaper rash cream. In the middle of his photographing rampage he moved the towel, pointed the camera towards the goods, and took a picture..UMMM I think I might be in trouble!!

Towards the end of the week things did start getting really difficult. He didn’t understand why he couldn’t go outside and play and pretty much was just completely over being stuck in the room!

This is his “trying so hard to be strong and not burst into tears” face He made this many times throughout the week and it broke my heart every time!

His melting point and THANKFULLY the day before we went home. After Shane left for the day Rad freaked out…he wanted to go home with his Dada so bad, he put his shoes on “something I didn’t even know he could do” while sobbing and tried to walk out the door

Now that we are home and we are trying to get adjusted and back on some sort of schedule. We currently have a CRAZY routine; which consists of trying to fit in all his medications, treatments, Peyton’s appointments, AND PLAYTIME or course!!

At the moment I have more responsibility than I EVER imagined and am trying not to have a nervous breakdown thinking about one day having to do this with TWO chilren!!! At this point it’s even too overwhelming to take it one day at a a time..I’m simply trying to take it one hour at a time!

Hospitalization Number 2

2011-06-14T21:55:00.006-04:00

Radek was unfortunately hospitalized yesterday for the second time already..This is sooo frustrating to me as a mom considering he JUST turned two!! I realize that hospitalizations are a definite possibility when dealing with cf, but I really didn't think he would be on his second admission so soon!!

He developed a cough about 3 weeks ago and even after aggressive treatments-steroids, LOTS of chest therapy, AND 3 weeks of an oral antibiotic he has only gotten worse….So at this point his doctor and I agreed that it is time for some iv antibiotics to FINALLY beat this pain in the ass nagging lung infection that just won’t go away!!!

Several of the doctors that were in to see him mentioned that this flair up in his lungs might be asthma related and have nothing to do with his cf, but either way it was serious enough to require an admission.

I’m not gonna lie…It really SUCKS being hospitalized with a 2 year old that has NO IDEA why he’s here, BUT on a good note, he is doing AWESOME!!!

He really is the toughest little fighter I know!!

They had to stick him twice yesterday to get a good vein for an iv. He did not cry, he did not whimper, he sat there WATCHING in complete fasicnation...it didn’t phase him what-so-ever!!! They were expecting to have to hold him down, but to everyone's surprise he sat there like a champ!!
They even pricked his finger several times to test the levels of medication in his blood, which not only consists of a prick, BUT they have to squeeze his finger getting the blood droplets out until it fills up this little vial, a very uncomfortable process that usually takes at least 5 minutes. I seriously cannot believe how tough he his, but I am so grateful for that because it’s definitely making this whole process so much easier!

Dreading This!!!

Tomorrow he is going under anesthesia “for the first time” to receive a PICC line.

A PICC line is a thin, soft catheter (tube) that is inserted into a vein in the arm, leg or neck. The tip of the catheter is positioned in a large vein that carries blood into the heart.

This will eliminate the need to redo his iv every couple days AND more importantly give us the opportunity to shorten our hospital stay and allow me to give him his medications from home! So NO I am absolutely NOT looking forward to him having to go under anesthesia, BUT I am looking forward to taking him home sooner rather then later!!

Once we get the PICC line placed and his lungs start showing signs of improvement his doctor is willing to let me take him home! In the mean time we are trying to make the best of our time here!!

It’s amazing the difference a year and a half makes!!!

today

Dec 09-Rad's first hospitalization

Today

Dec 09

30 Weeks

2011-06-09T14:00:00.002-04:00

Officially only 9 more to go!!!!

I’m hoping more like 7 1/2 or 8 though. Rad was a little early so hopefully his sister will follow in his footsteps!!

I’m still trying to keep up with my running although it’s starting to get kinda difficult…I now only do about 2 1/4 miles about 3 times a week having to walk about 1/4 of it do to killer side stickers, which I usually only get in the beginning and once I walk it off it goes away most of the time.
I’m sure it would be MUCH easier to do without having to push a jogging stroller with a 33lb toddler in it!!!
I do notice a HUGE difference by staying active with this pregnancy verses my last VERY UNACTIVE one…So far I’ve been free of the aches and pains and for the most part I’ve been feeling great, BUT I'm very quickly getting over being pregnant!!!!!

DA BELLY

Rad wanted to show off his belly too!!

Monster Jam Photo’s and Rad’s Health Status Update

2011-06-05T15:33:00.001-04:00

Last night we took Rad to see monster trucks which is his current obsession. Other than Diego he refuses to watch any cartoons anymore, he only watches races and monster truck videos..Needless to say the speed network is constantly on at our house, so now treatment time is even more torturous for me!!!!

Taking him to see the monster trucks last night was one of the coolest experiences I’ve had thus far as a parent. He was in HEAVEN!! I have never seen him so happy and excited before and after the trying month we’ve had dealing with the pseudo it was much needed!

Even though I know he probably won’t remember this experience, it’s a memory for me as a parent that I will always remember and cherish. It really is such an awesome thing to see so much excitement in your child's eyes!!

I was REALLY nervous that he was going to freak out from the noise WHICH WAS EXTREMELY LOUD, but as soon as all the trucks came out he got the BIGGEST smile on his face and immediately started making his “vroom vroom” car noises mocking them, which he made the WHOLE 1 1/2 drive down there!!!! He ended up refusing to wear any form of earplugs, which I wasn’t too crazy about, but as a parent I’ve learned to choose my battles and that was one I knew I wasn’t going to win so I didn’t even bother!!

Not only were there monster trucks there, but they had bulldozers to rebuild the jumps, not to mention the stadium was near an airport so planes and helicopters were constantly flying overhead…OH ANDDD they had fireworks at the end of the show! Pretty much all of his favorite things in one place...this kid was in his glory!!!

I unfortunatly forgot to bring my camera, but luckily I was able to get some pretty impressive shots with my cellphone!!

Rad’s favorite truck..The Grave Digger!

Rad was so into watching the trucks that he didn’t even realize he ate an ENTIRE stadium hotdog which was twice the size of a regular one, he also devoured french fries and ice cream!! LOTS of awesome calories for my little cfer!!!

Because he is pretty sick right now we had to bring his treatments with us, but luckly that didn’t stop him from enjoying the show!!!

Health Status Update:

Rad still has a wet cough, he just finished his last day of steroids THANK GOODNESS because they were making him crazy, but his lungs don’t sound as good I had hoped and expected at this point. I do feel he IS improving so hopefully the doctor will give us an extra day or two before making the call whether he needs to be admitted or not.
His voice is also TERRIBLY horse, which I’m guessing is from the Tobi treatments…The poor guy sounds like he has laryngitis. All and all I am feeling a little more at ease that we will possibly be avoiding another close call for a hospital admission, but I’m not getting my hopes up just yet.

Irritated

2011-06-02T10:52:00.000-04:00

Today I am feeling irritated, sad, mad, frustrated, defeated…Any negative feeling you can think of, I’m pretty sure I’m feeling it!

We are officially halfway through Rad’s first course of treatments for Pseudomonas, which when we started treating this he was pretty much symptom free other than an infrequent dry cough.

He now has started with a horrible wet cough and is getting out of breath very easily. This for me is sooooo frustrating…He is currently on Cipro, a VERY strong antibiotic, one that they don’t even usually give to children, but since it’s one of the few that can be taken orally and fight pseudo they do prescribe it to kids with cf.

I seriously feel soooooo defeated…I feel we’ve spent soooo much time and energy lately trying to get this crap out of his lungs and now he’s getting worse

SOOOOO now on top of all the medications he’s on, he’s now on a steroid for the next 5 days AND they want us to add addtional treatments to our already current grueling treatment regimen …So we will pretty much be doing treatments for almost 2 hours a day until we kick this!!!!

He’s so over it…and so am I!!!!!!

If his cough doesn’t go away by next week the doctor talked about admitting him for iv antibiotic's…I seriously just want to cry!!!

That little face breaks my heart

Pseudo Sucks BUT this weather is AMAAAZZZINNGG!!!

2011-05-31T13:41:00.005-04:00

It’s FINALLY nice outside and unfortunately do to Rad’s recent culture for Pseudomonas we are forced to add an additional 45 minutes of treatments to his already packed treatment schedule, BUT we aren’t letting that get in our way!!

Although this is now what Rad’s morning treatments look like while we TRY REALLY HARD to kick the pseudo out of his lungs, we aren’t letting that get in our way of enjoying this amazingly gorgeous weather that we’ve been waiting for ALLL WINTER LONGG!!!

Yes that is FIVE breathing treatments..Three nebs and two inhalers!!

I’m happy to say…We have not let one second of these beautiful days go to waste!! Not to mention it’s not even June yet and Rad and I are already sporting some pretty kick butt tans!!

Playing hard AND being a cf fighter is hard work!!

Last Week

2011-05-24T14:06:00.001-04:00

Last week was suppose to be our big trip to San Diego, but do to some scheduling conflicts we ended up having to cancel it kind of last minute.

We decided to take Radek on day trips to places around here instead and even though it rained the ENTIRE week “which seems to be our luck when we’re on vacation” we had a blast!!

It’s crazy how things end up working out though..It really was such a blessing that we didn’t go, especially with Radek’s pseudomonas culture coming back positive. Not only would that have ruined our whole trip, but it was soooo nice to be able to start him in the medications needed ASAP..if we would’ve been in CA we would have had to wait almost an entire week to start them, which would’ve been agonizing for me and like I said, would’ve pretty much ruined the trip.

Here’s some pictures of our adventures from the Please Touch Museum..This place was absolutely AWESOME and I can’t wait to go back!!!

Rad and Wes driving the car!

Rad and Miles fixing the car!

All the things to do here and Rad decided he wanted to play with the vacuum!! Let me just say…HE DOES NOT GET THIS CLEAINING ITCH FROM HIS MAMA!!!

Jennie and Miles rocking out on the piano!

Here’s a couple random pics of other stuff we did.

Rad definitely inherited my love for air hockey…he’s a natural, he play’s it on my ipad all the time!!

and as you can see from where the ball is..he unfortunately inherited my bowling skills too!!!

If you can’t get the pins with one…Why not try throwing two?!!

Pseudo Strikes Again…

2011-05-18T13:00:00.000-04:00

We were on our way down to Philadelphia yesterday for a fun filled day at the Please Touch Museum when I received one of my MOST DREADED phone calls ever!! Rad’s CF nurse called to inform me that his culture results came back and he is not only growing staph again, BUT he is also growing Pseudomonas again. This is not only devastating to hear, but it’s FRUSTRATING too!!! Just when you get comfortable with everything and think thing's are going good CF shows its ugly face and comes out of nowhere and slaps you right in the face!!!!!

It’s amazing how you basically forget about CF when your child is healthy. I mean the breathing and chest treatments are so routine they are just “normal” to us and the enzymes too! I can’t even fathom what’s it’s like to feed a child without giving him/her a load of pills before giving them food…even the frequent antibiotics..Rad gets a cough we increase his treatments and if that doesn't clear it up in a few days we call in an antibiotic…this is all normal to us!!

What isn’t normal is knowing that there is now 2 different types of bacteria growing in his lungs, damaging them, and causing his lung function to slowly deteriorate…this I am soooo not ok with!! Just thinking about it makes me want to burst out in tears!!

If that’s not bad enough, thinking about Peyton being here with her new sensitive lungs being exposed to this bacteria at such a young age is enough to want to make me mentally breakdown! I feel like this past year I have been continuously punched in the gut over and over again with one thing after another!! I’m hoping all this bad luck we’ve been nailed with is all getting out of the way so by the time Peyton get’s here some good luck and health will start taking over!!

Treatment Plan

Luckily since Radek really doesn’t have any symptoms “other than an infrequent cough” they aren’t going to admit him like they did last time he grew pseudo. We are going to do an oral cipro antibiotic for 3 weeks, TOBI via the nebulizer AND we are going to bump up his vest from 2x a day to 3x. SOOOOOOO this means his “normal” 45 minutes of treatments per day is now going to be 1 hour and 45 minutes per day!!!!! All I can say is, it’s going to be interesting AND Toys R Us here we come because we’re going to need some serious distractions!!!!

CF Awareness Video

2011-05-18T12:21:00.001-04:00

A CF awareness video made by fellow cfer Julia Rae. It shows the daily routine of a person with cf. She is lucky enough to have a pancreas that works and doesn't need to take enzymes, so she used Radeks video of him swalling all 6 of his enzymes back when he was 12 months old!

Great Strides 2011

2011-05-18T12:02:00.001-04:00

This past weekend was the Great Strides Walk. This walk is the foundations largest national fundraising event and since CF doesn’t get any government funding it’s really important for us to get out there and raise money on our own so we can get this stupid disease cured!!!!

The turnout our team had this year wasn’t nearly as successful as last year, but it was raining so I’m blaming it on that! For those of you who came out, braved the rain, AND raised money I THANK YOU from the bottom of my heart! It means the world to me that so many of you go out of your way to help try and cure Radek and thousands of others with this disease!!

We still have a couple more fundraising events coming up to put towards our teams total, but I’m happy to say that so far we have raised over $12,000!! My goal for this year is $20,000 and I really think we will get there by the time we are done with this years fundraising events!!!!

Radek and Peyton :)

Team Radek Loves to Breathe…Minus a few people that weren’t around when we took this pic!!

Holy Hormones!!

2011-05-13T19:24:00.001-04:00

26 Weeks!

Let me just start by saying how completely different this pregnancy is verses my last one! I feel like a raging lunatic this time around!! A lot of people have been telling me it has something to do the fact that I’m having a girl this time and the girl hormones are a little rougher than the boy ones!

I seriously can go from happy, to sad, to mad, to annoyed in like 2.5 seconds..Not to mention my limited amount of patience these days…I did not have ANY of this during Radek’s pregnancy!! Although with him I was HUGE and I’m not now, so for that I’m thankful!

I have been running 4-5 days a week throughout this pregnancy. On the treadmill I’m able to run 3-4 miles and outside do to the terrain and pushing the jogging stroller I’m only able to bust out about 2.5 miles. THANK GOD I can still run though, I can’t imagine how much more psychotic I would be if I wasn’t getting any exercise!!!

This is my belly looks like right now at 26 weeks…Keep in mind I’ve been eating healthy and exercising!!

This is my belly at 26 weeks with Radek…With NO exercise and eating EVERYTHING in sight!!!

All I have to say is….WOW!!!!

Good News!!

2011-05-11T12:19:00.001-04:00

Clinic Visit Update-May 2011

Yesterday was Radek's routine clinic visit and I’m happy to say…it went GREATT!! He is back in the 75% for his weight and his lungs sounds perfect….YAYYYYY !!!

SOOOOO the next time we go will be in August WITH Peyton, which means the next time we go I will be bringing not one but TWO patients!! I’m not gonna lie, yes it is exciting thinking the next time we go Peyton will be here, BUT the anxiety of all of this also makes me feel like I want to throw up thinking about dealing with TWOOO kids with this disease!!

All in all I KNOW that we will get through it and before we know it everything will be routine and we as parents won’t know any differently! Atleast I HOPE, but the thought of it still scares the crap out of me!!

Great Strides

On another good note the Great Strides Walk is this Saturday AND our shirts arrived today!!

I would like to say A BIIIGGG THANK YOU to Katie Gerenser for designing them for us!!!

It's not too late!!

For those of you interested in joining our walking team or even just donating to Cystic Fibrosis to help cure Radek and the thousands of others suffering with this disease click on the link below!

http://www.cff.org/great_strides/dsp_donationPage.cfm?registeringwalkid=7182&idUser=280840&source=snot

LOOOVVVINGGGG this weather!!

2011-05-09T14:28:00.002-04:00

I’ve been slacking on updating my blog lately for the simple fact that Rad and I have been super busy enjoying this amazing WARM spring weather, something he and I have been impatiently waiting for ALLL winter long!!!

Last week we made a trip to the Bronx Zoo. I had fun, but we pretty much drove 2 hours for my child to be more amused by the vehicles being driven around by the workers than he was by the animals!!

A few of the pictures I got of Rad actually looking at the animals!

Oh wait..I think he see’s something..Is it a giraffe, or maybe an elephant?!

Nope..JUST a vehicle!! This is what he referred to as a “lawnmower dump truck” and he was completely FASINATED by it!!!

The baby giraffe in what looks like some sort of yoga position!

The giraffes were my favorite animal here..I believe Radek was distracted by a plane flying overhead at this time and completely missed seeing them!! LOL

We also attended the Soap Box Derby held here in our town this weekend. A couple of my brothers friends even decorated their cars with our Radek Loves to Breathe logo!!

AAaannnnddd last but not least….Radek was given the FUNN opportunity to visit a firehouse. This is something I have been really looking forward to taking him to because he get’s sooooo excited when he sees a fire truck driving around…

Let’s just say it didn’t go as smoothly as I hoped!!! As you can see he wasn’t a fan of being up close and personal with the trucks!!

and he HATED being in them even more!!!

Well at least I had fun and found it pretty interesting!! I don’t know if he was just overwhelmed by the size of them or what. Before we left they gave him a goody bag, which included a stuffed fire truck and he hasn’t set it down since, so I guess I didn’t completely scar him from this experience!

This just goes to show you the unpredictability of kids!! I am now really nervous about our upcoming trip to see a monster truck show in June…if he couldn’t handle these big trucks parked in a garage…HOW IN THE WORLD is he going to handle the BIG LOUD trucks jumping over cars?!?!!!!

24 Weeks

2011-04-28T12:18:00.002-04:00

15 more to go!

So far this pregnancy has been VERY good to me! Up to this point I was running about 3 miles around 5 days a week. This week I was forced to switch it up to a run/walk and cut it down to 2.5 miles due to these painful side stickers I’ve been getting due to my ligaments stretching.

I can’t complain though, I’m just grateful I’m still able to stay active and not TOTALLY pack on the pounds like I did with Rad..HOWEVER, this darn pregnancy weight still seems to be creeping up to my thighs and butt area..Can someone please tell my legs and ass that the baby is not in that area and they can stop getting bigger!?!?!

I had my monthly ultrasound yesterday to check on Peyton and I have to say even though I went through this already with Radek, I still find it completely AMAZING!!!

She is currently breech and if you look closely those are her feet RIGHT ON MY BLADDER!! This explains WHY I keep getting sudden urges to pee ALL THE TIME!!!!

Peyton’s 24 week profile pic

Radek’s 24 week profile pic

Although they are both completely adorable...I am not seeing a resemblance!!

Easter Fun 2011

2011-04-26T10:02:00.001-04:00

Rad and his cousin Weston ready to hunt down some eggs!

Ready….GO!!!

Rad and my Dad who he calls “Happy” instead of Pappy

Rad picking out a car for one of the prize eggs he found!

Posing with Rad and Peyton!!

<3 Him!!

Rad and Wes..Best Buds!!!

The Boys-This Year

The Boys-Last Year

My Top 5 Favorite Things!!

2011-04-21T18:31:00.005-04:00

I’ve done A LOT of blogging lately about cars, trucks, and pretty much just boy stuff in general…So today I decided “in honor of Peyton” I would girl it up a little and go over my top 5 favorite things that I technically could live without, BUT I’m glad I don’t have to!!!!

Running Shoes-There’s not much I enjoy doing more than going out on a nice run to de-stress and clear my head..oh yea AND burn off all the unnecessary calories I ate during the day!!!

Hair Ties “that fit around my wrist”-I HATE when my hair is in my face. I ALWAYS keep a hair tie around my wrist for that unexpected windy, rainy, or really hot day..I never leave home without one!!!

BEST face wash EVER-Skincare is really really important to me. I’ve probably used every skincare product on the market. A couple months ago I discovered this face wash, which is not only pretty inexpensive, but works GREAT!! Even with my crazy pregnancy hormones my skin has never looked better!!

Smart Phone-This for me is a LIFESAVER!! Not only can I upload coupons on it in line at the store, but it also scans barcodes and tells me who in the area sells the item and how much they are selling it for…WHAT IS BETTER THAN THAT?!! Not to mention....while Rad thinks I’m enjoying those “oh so fun” cartoons with him during treatment time, I’m really facebooking, surfing the internet (Perez Hilton is my favee), or playing games on it!

Designer Handbags-This is something a lot of people don’t understand, but I LOVE me an expensive handbag…Some people spend their money on gambling, some on hunting and fishing equipment, some on tickets to sports games..etc etc. I like to spend mine on purses!! This current one is a Juicy Couture bag, which I purchased last July in California and I’ve been using it ever since. I would say I definitely got my money’s worth out of this one!!!

Burdersher

2011-04-20T11:43:00.003-04:00

Rad’s pronunciation-bur/der/sher

Correct pronunciation-bulldozer

Our neighbors have had this bulldozer parked in their yard for the past week and Rad hasn’t stopped talking about it, so today we decided to take a walk down to their house and check it out!!! As you can see..he was in AWW!!

He walked around it checking it out like it was the coolest thing on earth…AND actually cried when we left!!

Boys are so funny…I really don’t understand the fascination with it, but I’m sure he will never understand my fascination with handbags and shoes!!

One day I envision Peyton will be looking at a pair of shoes the same way Rad is looking at this bulldozer…I’m thankful I have a boy, BUT I'm SOOOO glad I’m having a girl next!!

Radek’s Favorite Things

2011-04-18T20:06:00.002-04:00

We recently celebrated Radek’s 2nd birthday and instead of going with just one theme for the party, since he has sooo many things he is into right now, we decided to combine them all together.

A Diego cake and birthday banner

monster truck plates "which is currently is FAVORITE thing"

A Cars center piece and Thomas the Train party blower thingies

and of course…BALLOONS!

He also LOVES Jeeps..So we decided to get him a Jeep Power Wheel, which he looovvess…I just can’t wait until he figures out how to steer it..Running along side him the whole time is pretty annoying!!!

This is the helmet we bought him to wear while driving his jeep..Isn’t it adorbs?!!!

He even blew out his candle!!

Happy 2nd Birthday Radek!!

2011-04-13T10:35:00.000-04:00

Two years ago today, on April 13 2009 at 2:19pm, Radek James entered this world!

Rad and I were reminiscing this morning by going through his baby pictures “which he was LOVING” but it totally made me miss my little babbby boyyy!!!

My 6 lb 11oz baby boy!

Last year…

26

2011-04-11T08:54:00.000-04:00

The amount of enzymes Radek takes EVERY SINGLE DAY "without ever complaining" just so his body can digest his food.

6 with meals

4 with snacks

He is AMAZING to me!!!!!

Someone's Afraid of the Easter Bunny!

2011-04-09T08:35:00.002-04:00

I took Rad to see the Easter Bunny yesterday and to my surprise…he was afraid of it!!

I even bought him a book that I’ve been reading him every night for the past month that’s all about the Easter Bunny, just so he would be ready and excited when the time came to meet him….well, so much for that idea!!!

Since my little man was afraid of the big scary bunny, I figured the only way I would get him in a pic is if I joined in and I have to say…I LOVE IT!!!

last year!!

Wordless Wednesday

2011-04-06T10:53:00.001-04:00

Please Help Cure Radek!!

2011-04-04T13:05:00.001-04:00

This year's Great Stides Walk to help Cure Cystic Fibrosis is quickly approaching!!!

The date for the walk is May 14, 2011
It starts at 9:30 and is located in the Lehigh Parkway, in Allentown, PA

For those of you who live in the Lehigh Valley area-Please join team "Radek Loves to Breathe" and help cure Cystic Fibrosis.

***If you aren't able to attend the walk, but still want to help you can do so by clicking on the link below and making a donation!!

By joining our team you will be getting a FREE team Radek Loves to Breathe shirt....For those of you interested in joining, please sign up by April 10 so I can get all the shirts ordered in time!!

Here is the link to join the team and/or make a donation!

http://www.cff.org/Great_Strides/dsp_DonationPage.cfm?walkid=7182&idUser=280840

THANK YOU in advance!!

FYI-Wednesday April 6, the Keystone Pub is hosting another Cystic Fibrosis Benefit...If you go there between 5-9 10% of your bill will be donated to this cause!!!!

chopsticks

2011-04-01T09:45:00.002-04:00

We took Rad out for sushi the other night and I have to say…It was one of the most entertaining dinners I’ve ever had!! Watching him figure out how to use the chopsticks was both impressive and hilarious!!!

First attempt

annndd he got it….

YAAAY!!

I’m impressed, it took me FOREVER to figure those things out!!!

He was like an old pro in no time!!!

LOVINGGG the fact that he now has an audience!!

Discovering that not only can he eat with them, but they make AWESOME drums too!!!

Watching him try to get the edemame beans out was pretty entertaining too!!!

20 Weeks

2011-03-31T12:46:00.000-04:00

Officially over the halfway mark!!

My 20 week baby bump

We had Peyton’s 20 week anatomy scan yesterday and although we know she has CF, I am MORE THAN thrilled that her heart, kidneys, bones, arms, legs, fingers toes, brain and everything else they checked so far looks great!!!!

Below are some pictures from my ultrasound. The ultrasound tech compared her to the size of a can of coke this week..it's hard to believe that in 19 short weeks she will be HERE and MUCH MUCH bigger!!!

Her Profile

Her lil foot and ankle

She’s giving us the thumbs up!!

Here’s a 3d profile pic..She doesn’t have a lot of fat on her face yet, but in a couple more weeks she will start looking MUCH more baby like!!

I will be going back every 4 weeks for ultrasounds to make sure she doesn’t have any complications due to cf. If by chance she does happen to have some, I will deliver her at the Children's Hospital of Philadelphia, but hopefully everything will go smoothly just like it did with Radek!

Terrible Twos

2011-03-30T15:02:00.000-04:00

Now that Rad is nearing the two year mark..I TOTALLY understand the meaning of the terrible twos!!!!

He is LOVING testing his boundaries and getting into trouble and has recently grown quite accustomed to the spot in the picture below…the “time out” bench!

As you can see he is totally unaffected by sitting there…During the 2 minutes he has to sit there, he usually waves to me while saying “hi mama” or sits there going “vroom vroom” making his ever loving car noises!

Needless to say it’s VERY difficult to keep a straight face while punishing this child!!!

Cravings

2011-03-26T09:54:00.002-04:00

This is what happens when you shop at Target pregnant and ~~hungry~~ starving!!!

As if all that junk wasn't bad enough..I felt the need to stop and get

this on my way home :)

Oh how I LOVE being pregnant!! :))

Yesterday

2011-03-21T15:44:00.003-04:00

Yesterday was a busy fun filled day for us. Not only did Rad get to watch police cars and fire trucks at the St Patrick's Day parade we went to, but I was able to participate in the “Out Run CF” run.

Peyton and I getting ready to run our 4 miles in honor of her, Rad, and all the other CF Fighters!!

Rad and I at the parade…There was a time not long ago that he use to love posing for pictures with his Mama

All ready and excited for the parade to start!

He was absolutely fasinated by all the cars, trucks and entertainment!!! The parade was almost 2 hours long and he sat there the entire time!!!

Bright and Sunny Days!

2011-03-19T11:05:00.000-04:00

This week has been FABULOUS as far as our difficult toddler situation we were having goes! I learned new meal time strategies at the cf conference last week that I started implementing as soon as I got home. Not only have they made a huge difference in Rad’s eating, but meal time is actually MUCH more enjoyable and stress free now!!!

The most helpful strategy that I learned is rather simple. Ignore the bad behavior and praise the good. Like all children Rad likes attention, whether it’s positive or negative..attention is attention as far he and pretty much every other child is concerned…So if I sit there with him and continuously say “Rad take a bite of this this, or Rad eat, or Rad try this” I’m giving him attention for doing nothing…BUT if I sit there and only praise him while he’s taking a bite of his food, he is realizing that the only way he is going to get my attention is if he’s doing what he’s suppose to and actually eating.

Not only does this technique work with food, but it can be implemented with lots of different things and situations.

Such a simple yet amazingly effective solution!!

Treatment time has also improved dramatically for the best…Thanks to Rad’s new love for the show Go Diego Go. We ONLY turn in on during treatments, and when Rad knows it going to be on not only does he sprint over to me, BUT he grabs his vest and hands it to me to put on him…Hopefully this Diego phase lasts for a while because he is my lifesaver right now!!!!

Not only did we have a smooth stress free week, but it couldn’t have ended better. It was whopping 81 degrees yesterday and Rad and I enjoyed EVERY SECOND of it outside!!!!!!!

Oh warm weather how I missed you in my life!!!!!!!!

just one of those weeks...

2011-03-09T12:22:00.003-05:00

This has been one of those weeks!!! The kind that I feel like I could just break down and cry at any second and have several times. The kind that I feel completely defeated by CF. The kind where I can’t help but sit back and reminisce about how easy and carefree my life was just a couple years ago..”not that I would change any of it for the world, but sometimes I wish I could go back to that feeling of not having to worry about anything/anyone but myself for just a couple of hours!!”

I’m so frustrated right now. Rad is still not eating very well, even with all the changes I’ve made to his routine. I’ve cut out snacks and drinks throughout the day, I’ve only been filling his cup 1/4 of the way at meal times just enough for him to swallow his enzymes, I’ve invested in every toddler loving food I could think of my freezer is filled to the max!!!
At this point it’s pretty much out of my control, I really don’t know what else to do.   I DO realize this is a toddler thing, but it’s so frustrating because the need to maintain a healthy solid weight is such an essential part in staying healthy for a CFer!!
They say, “a bigger body means bigger healthier lungs”!! Not to mention it also gives them that extra fat preserve for when they’re sick and their body uses all those extra calories to breathe and fight off the illness.

I’m trying so hard not to stress about it because like I said, it’s out of my hands at this point..if he’s not going to eat, he’s just not going to eat. What I’m REALLY trying not to do is to make a big deal about it in front of him, but yesterday after I gave him a bowl full of mac and cheese and hot dogs for lunch, which he usually LOVES and saw him take a bite of it followed by him pushing his bowl away and saying “Mama, me no eat” I couldn’t help but just completely meltdown. I walked away from him so he couldn’t see me, sat behind my kitchen counters and cried…I just really needed to!!

I’m sooooooo frustrated beyond belief with this eating thing.

Annnd if it’s not bad enough with dealing with the eating, dealing with treatments isn’t any better! Rad HATES them now, which I completely don’t blame him…I mean who wouldn’t?!! Especially a toddler that has NO CLUE why he’s being interrupted while playing peacefully with his toys to put on this torturous vest that shakes the living crap out of him AND this mask that makes him breathe this gross tasting medicine in his lungs!

It’s not always a battle, but when it is, it SUCKS!! He is starting to kick and hit me…not only do I hate dealing with that part of it, but I hate seeing him like that!!! Especially since he really doesn’t understand why I’m doing this to him, WHY I’m torturing him!!!

So if that stuff hasn’t made my week crappy enough, I received a letter in the mail yesterday from his secondary insurance company saying they are no longer going to pay for his current out-of-network pulmonologist WHO I LOVE, the one we switched to a couple months ago!! They want us to go back to his old one because they don’t see a medically necessary reason why we switched….ARE YOU KIDDING ME?!!! His new pulmonologist is the one the dx’d and started treating him for asthma, which reduced his number of illness and helped improve his lung function!!
I’m completely familiar with how much insurance sucks and how hard they are to deal with because I use to do medical billing and collections for a living, but it still pisses me off more than anything!!!!!

I know I’m extra hormonal lately from being pregnant so all of these issues are having more of an effect on me than normal, but either way, I’m still completely frustrated!

FINALLY…SOME GOOD NEWS!!!
Rad’s recent culture came back clear, which at the end of the day is the best news this week I could’ve hoped for, other than hearing they found the cure to CF! It’s always so nerve wracking waiting for his culture results…He cultured pseudomonas back in December of 2008 and was treated with iv antibiotics and a 10 day hospital stay, which thankfully ended up clearing it up, but I am still always dreading that phone call telling me it came back!

Also, I am more than excited that tomorrow I am leaving for the Cystic Fibrosis Learning Center Continuum Conference, which is a 3 day conference all about easier and better ways of dealing with CF and about the new and upcoming medications coming out. This could not have came at a better time.
I am in dyer need for that boost of hope, support, and just simply getting away from everything for a couple days!!!!!!

I will post all the new, exciting, and helpful things I find out next week!!!!

the end is near

2011-03-07T10:22:00.001-05:00

Thankfully the germy season is FINALLY coming to an end!! To celebrate this Rad and I went to Chuck E Cheese for the first time last Friday and had a BLAST!!!!

It was a rough winter trying to keep him healthy and away from all the germs and illnesses going around, but I keep trying to remind myself that it’s only temporary! The doctors recommend waiting until he’s around 3 to expose to him all the germs so his body is a little bigger and stronger and able to fight off the bugs better!
So if staying in and missing out on some fun is what we need to do to keep him healthy, I’m more than willing to suffer from bouts of insanity in doing so!!!

Rad and I enjoying the photo booth!!!

This Time Last Year

2011-03-04T09:32:00.000-05:00

It’s CRAZY to me the difference ONE short year makes!!!! Although I do miss my little baby boy, I absolutely LOVE how much fun we are having now and I know it’s just going to keep getting better!!!

16 weeks down.....

2011-03-03T10:26:00.000-05:00

23 to go!!

Rad practicing his big brother duties!!

Clinic Visit Update=Frustration

2011-03-02T10:29:00.001-05:00

Yesterday was Radek’s routine clinic visit at CHOP and needless to say it didn’t go as well as I would’ve liked!
For the first time ever, Rad has lost weight It was ONLY 1/4 of a pound BUT STILL….He should be gaining weight!!!!!

To me this is crushing, especially since I TRY SO HARD to fatten this boy up!! I add heavy whipping cream to his milk and his cereal. I am constantly trying to find ways to add extra fat and calories to his diet. I EVEN take him to McDonalds a couple times a week for a chicken nuggets happy meal “his favorite” and for anyone that knows me knows this is a HUGE deal because I think fast food is the GROSS!!!…(except for Chick Fil-a that doesn’t count as fast food in my book!)

The Game Plan
All the work and effort I’ve been putting into Rad to fatten him up is obviously NOT working so it’s time to change things around! I’m going to start only filling up his sippy cups half way…especially before his meals. I would skip them all together, but he needs them to swallow his enzymes and taking them away once the enzymes are swallowed doesn’t work…it just turns into a HUGE tantrum.

I’m also going to eliminate his snacking and drink intake throughout the day.

Instead of putting a big variety of food on his plate, I’m going to give him a little bit at a time to monitor just how much he’s eating AND I’m going to make sure the dogs aren’t in the room “helping” him finish his meal.

He has already outsmarted me this morning with this little trick. I gave him french toast sticks for breakfast. I was doing things around the kitchen as he was eating so my attention wasn’t completely on him, but I looked over and saw that he ate them ALL pretty quickly!! I was beyond excited about this and for the fact that my “new” plan MUST be working!! I continuously praised him and I even gave him a handful of blueberries, his all time favorite treat, which he calls booberries.
Well my excitement was short lived, as I cleaned him up and lifted him out of his chair I saw a big ball of french toast sticks clumped up in the back corner of his seat!!!!!!!
HOW DOES A 22 MONTH OLD FIGURE THIS OUT!??!!!! I was officially outsmarted by my not even 2 year old this morning…All is I keep thinking is that I am in BIG trouble when he’s a teenager!!!

The biggest thing I learned yesterday was that it’s OK to remove Rad from the table if he’s not eating. I don’t have to keep catering to him, trying to find things he likes, which consists of me loading pretty much everything in our pantry on his plate until he eats something! If Rad didn’t have CF this is something I would NEVER even consider, but it seems so much is focused on eating and weight gain that I completely stress myself out when he doesn’t eat.

His nutritionist let me know that if he doesn’t eat a couple times, it’s ok!! It’s something I’ve been wanting to do, but I just needed to hear that it was ok to do. So now when he gets into his moods of not wanting to eat, my duties as a short order cook are officially done and he can just be hungry. I can then hopefully load him up on a fattening snack before bed!

On a Good Note
Even though this cold he has is still lingering just a bit, his lungs are perfectly clear, which at the end of the day is the BEST news to hear!!!!

Fun Foto's From February

2011-02-28T16:06:00.001-05:00

Sporting the 3D glasses he got from the movie we saw the other day!

He likes to stand at our bedroom window and point out EVERY SINGLE car that drives past!

He also LOVES driving his cars on any flat surface around!

He likes to climb on the dog…

but doesn’t like when she get’s up and makes him fall off…

Our dog Dudley carries his bed and lays under our dining room table to get away from the wrath of Radek…Poor Rad just can’t take a hint and LOVES to go under there and ~~torture~~ join him!

Rad and Dad eating breakfast and apparently in very deep conversation!

Fundraising Fun

2011-02-25T14:12:00.005-05:00

This past Wednesday night, the Keystone Pub held a benefit dinner for Cystic Fibrosis, from 5-9 they donated 10% of their sales to this cause.

They will also be doing this April 6 and May 25, both are Wednesday nights from 5-9.

Here’s some pics I took…

Not too long ago this table would’ve been lined up with beers and shots…Now it’s lined up with kiddos!!!

Rad was very excited about all the money being raised to cure him!!

This is the $900 Fuji road bike that was donated by Cycle Fitters. It is currently hanging at the Keystone, and will be there until we raffle it off at the fundraiser being held there on June 25 from 1-4. You can stop in and purchase raffle tickets anytime during business hours!!!

1 for $2.00

3 for $5.00

Last night I also attended another CF Fundraiser at the Edge, a restaurant in Bethlehem. These are the only pics I took though..My besties and I having fun and raising awareness for CF!!!!!

TWO Minutes TOO Late!

2011-02-22T10:54:00.007-05:00

LAST MONDAY
While in the waiting room for my prenatal appointment last Monday, Rad happened to pick up a horrible cold that has been kicking his poor little butt ever since! It came from this little girl who he was in the presence of for a measly two minutes!! Shane set Rad AND his toys right next to her so they could play together. I immediately noticed that she seemed sick and actually contemplated in my head for a moment how I should handle this situation...Do I just be rude, scoop him up and walk away from her, do I scoop him up and give her mom the spiel about how Rad has an illness that causes him to get sick very easily and blah blah blah blah, or do I just suck it up, take a chance and let them play together??
I decided to go with the first of the three options..I scooped him up, walked up to the front window and asked if we could wait in a different room.
Thankfully they were really great about it and immediately moved us into our own private germ free waiting room.

TOOO LATE!!
It’s definitely been a rough last couple of days to say the least. Rad woke up Wednesday night and looked awful!!! His face was puffy, he had a fever, a cough, a runny nose, pretty much all his usual sickness signs..but times them by ten!!! I have never seen him get so sick so fast. Usually it starts out with a runny nose, a slight cough and gets worse from there…This cold had no warning signs!!!!

It is seriously soooo frustrating for the simple fact that I’ve been keeping him pretty much quarantined to the house almost this entire winter, just so he isn’t exposed to germs like these and constantly getting sick. How is it that we go to a prenatal appoint for a freaking hour and he gets sick…we weren’t even anywhere fun

I SEE THE LIGHT
Thankfully things are starting to look up. My little snot monster is finally starting to dry up, he is FINALLY starting to eat again, he has been sleeping much better, and his face is starting to have more color…NOW if we can just get rid of his GOD AWFUL lingering CF cough I would be one happy Mama!!!!!

FRUSTRATION!!!
Why do parents feel the need to drag their sick kids out in public?? I mean granted, I understand that this girls mom probably needed to go to this appointment, BUT seriously keep her on your lap and away from other kids!!!!!! I just want to say a big SARCASTIC thank you to her..because of her and her thoughtless actions this past week has been hell for my son and my family!!!!!

HE MAY BE SICK, BUT HE’S STILL REALLY CUTE!!!!

Who doesn’t LOVE wearing a nice big oversized hoodie while they're veg'ing out at home feeling crappy!?!?!

Upcoming Fundraisers and a chance to win a $900 BIKE!!!!

2011-02-18T12:21:00.001-05:00

Fundraising season is officially starting!

Raising money for cystic fibrosis means the world to me!!! Like I always say “I don’t have the power to cure my son, I unfortunately can’t “fix” him, but I DO have the power to do EVERYTHING possible to raise awareness and money so that the people that DO have the power to find a cure have the funds to do so!!!

We are hoping that those of you in the Lehigh Valley area can join us in some of the fundraisers we have planned for this year, which are listed below!

For those of you who are not in the area and still want to help cure Radek, his sister Peyton and the thousands of others affected with cystic fibrosis, you can click on the Great Strides link on the left side of this page and it will take you to a page where you can make a secure monetary donation!

This year we have been very blessed by being chosen as the “target cause” for The Craig J. Geiger Memorial Golf Tournament, for more information about this charity and the inspirational way it was started visit the website listed below.
http://www.craiggeigermemorial.org/

We have several fundraising events set up with them at the Keystone Pub. The main event is a golf tournament at the Willow Brook Golf Course on September 10, which will be a 4 person scramble so you don’t even have to be good at golf to participate!! Brown Daub will also be donating a car for a whole in one prize!!

The first event we have scheduled is listed below.

Bring the family out to the Keystone Pub for some dinner and drinks and 10% of your bill will be donated to cystic fibrosis!! What’s better than enjoying good food and helping out a GREAT cause?!!

The other dates the Keystone Pub will be donating 10% of your bill are:
Wednesday, April 6
Wednesday, May 25

We will also be raffling off a Silver Fuji Newest 2.0 Road Bike Worth $900 donated by Cycle Fitters in Forks!! www.cyclefitters.com

The bike will be displayed at the Keystone Pub "after this weekend" for you to check out. You may also stop in and purchase raffle tickets at anytime.

1 for $2.00 or 3 for $5.00

The bike give away is scheduled at the Keystone Pub on Saturday, June 25 from 1-4. We will be raffling off the bike along with other great prizes!!

The Great Strides walk this year is scheduled for May 14.

I know I included A LOT of information and dates here. I will be breaking it down and giving more specific details as each date approaches. For those of you interested in participating in the golf tournament we need to know sooner then later since there is a limit on the number of people able to participate!!!

THANK YOU ALL!!!

2011-02-17T09:39:00.002-05:00

I would like to say a BIG THANK YOU to everyone who has reached out and supported us these past couple of days. All the messages, emails, phone calls, and text messages have been so emotionally uplifting!

Knowing we have the support of so many of you is really making this whole situation much easier!!

I received this one email in particular yesterday and it’s EXACTLY what I NEEDED!!!

It came from a cf fighter named Julia Rae. She has already been such an inspiration to me with her many talents. She is only 18 years old and has already started her own foundation to raise money and awareness for cf.
http://www.singingatthetopofmylungs.com/

She is currently living in LA and working with producers to record a song for her foundation.

Below is the email she sent me-

Hi Jamie!
CONGRATULATIONS! You must be so excited for another beautiful addition to your (already beautiful) family!!

I just wanted to write you a note because my older brother, Will, and I both have CF and my mom went through exactly what you are going through now. You are right, it is so nice to have someone going through exactly what you are going through. It actually makes having CF seem less daunting and more normal. When we were younger we actually couldn’t wait to do therapy together because that was the only time we were allowed to play Mario Kart and other video games. (My mom used that as an incentive for us to do therapy plus it made it fun.)

This is just a small ounce of wisdom my Mom’s doctor gave her when he told her Will had CF: He had my oldest brother James(no CF) on his lap and said “The only difference between the challenges you’ll face with both of your boys is that you can put a name to Will’s.” I think that was such a great thing to say because life is so unpredictable and no one’s path is defined with or without a CF diagnosis.

Peyton is such a beautiful and AWESOME name! I love boy names for girls!! Radek will be such an amazing big brother.
Congratulations again!! :)
Always,
Julia

I also found out that the age difference between her and her brother is almost the SAME as Radek and Peyton are going to be!!

Thanks again Julia, for taking the time out and sharing your story with me. It really gives me so much hope and faith that EVERYTHING is going to work out just fine!!! XX

Baby Girl Update

2011-02-16T10:22:00.003-05:00

As most of you know….We found out the devastating news yesterday that our baby girl is going to have Cystic Fibrosis like her big brother.

It wasn’t ANY easier getting this news for the second time. After getting the dreadful phone call “just like last time”…My knees still buckled and I still fell to the ground…I still cried harder then I’ve ever cried in my life…I still hurt worse then any other pain I have ever felt…I still laid there on the floor asking “why” over and over again…I still felt like I had failed as a mother!

The only difference between this time and last time is that I HAD to pull myself together and be there for Radek…I couldn’t sit around for weeks and feel sorry for myself and my baby.

Even though I “kind of” know what to expect this time around it’s STILL just as scary as it was the first time. I have so many thoughts and emotions going through my head. Am I going to be able to give Radek the same care and attention as I do now?? How AWFUL is it going to be when they are both sick and on meds and need to BOTH do 4 treatments a day!???!!!! I HATE having to give just Rad the 4 treatments a day when he’s sick...THAT’S 8 TREATMENTS!!!

I do have “some” comfort in knowing that very soon Rad will be big enough to handle his treatments pretty much on his own..but I just hope I can give them BOTH the care and attention that they NEED to thrive and live a happy healthy life!!
I also have comfort in knowing Rad will have somebody to share the cf journey with him..He will have somebody that is going through exactly what he is going through...He will have someone to sit there and do treatments WITH him...AND just like him she will also need enzymes everytime shes eats. So in a small way it's "a little" bit of a relief that both she and Rad are going to have the SAME needs!! I don't have to worry about Rad being jealous of his healthy sister..OR his healthy sister being jealous over the time I spend with Rad because of all his special needs. Everything is going to be EVEN in this household!!
Keeping those thougths in my head are making this whole situation not hurt "as" bad!

I JUST Don’t Get it!!!
I will never understand why innocent babies are given this path in life. Why they were made to have to fight their way through life…Why I was chosen to be the one to take care of them…How this 1-4 chance hit us twice…We were hit by that 25% chance TWO TIMES.....WHY OH WHY DO I NOT have this luck playing the lottery?!!!!!!!!!

Rad’s shirt pretty much says it all!!!!

Picking Up the Pieces
Yesterday I mourned over the situation. I sat around and felt sorry for myself and cried and cried and cried…Today I am moving on! I am officially excepting it, that’s ALL I CAN do.
I can only hope and pray that I raise both of my babies to be strong fighters, to NOT feel sorry for themselves, but to be and feel blessed for the things that they DO have.

~Peyton Elizabeth Remaley~

Our baby girls name! I felt it was important to name her especially now that we know her DNA!!! I think it will be easier to bond with her and the whole cf situation now that she has an official name and identity! We had a couple others in mind, but we chose this name for several reasons.

1.Shane NEVER has an opinion about anything and he voiced several times that he really liked it…not to mention it was a facebook friends favorite
2.Not only is it a "pretty" name, but I feel like it’s also a good “tough” name for the fighter she is going to need to be!
3.Peyton Manning is my FAVORITE athlete “I even have his jersey in pink” and since Radek is named after the hockey player Radek Dvorak, I felt it was pretty fitting to name her after an athlete too!!!

August 11, 2011

Is the date she is scheduled to arrive via C-Section!

My Valentine

2011-02-14T14:12:00.003-05:00

Although I think Valentines Day is a pretty pointless holiday, I LOVE that it gives me a reason to go out and shop!!!

Rad came downstairs to his present this morning and could NOT wait to dig into it!!!

He was pretty excited about these yogurt covered raisins he opened AND I’m pretty excited about the 4.5 grams of fat per box!!

He's LOVING getting presents!!

After going through the bag and opening everything, he seemed clearly disappointed….

”That’s it?!!”

He couldn’t wait to break out his new numbers book!! His favorite number is 2 right now and he won’t count past it!!!! Now that he has 1 through 2 down pat…I’m hoping to get to 3 or maybe even 4 by the end of the week!!!! I know….I have such BIG hopes and dreams for him!! LOL

After reading through his books for a couple minutes he decided it’s WAY more fun to drive his tricycle around the house with the gift bag over his head!!!

I love the way my dog is looking at him here like he’s crazy!! LOL

“Mama, What’s so funny?!”

BIG NEWS!!!!

2011-02-08T15:42:00.001-05:00

Rad is going to be a BIG BROTHER!!

Due Date is August 18.

This is our BABY GIRL!!

I will be 13 weeks along this Thursday.

I found out the gender early on because I had a *CVS done to find out if she is going to have cf. I still didn’t get those results back, hopefully early next week.

*Chorionic villus sampling (CVS) is a prenatal test that detects chromosomal abnormalities such as Down syndrome, as well as a host of other genetic disorders. The doctor takes cells from tiny fingerlike projections on the placenta called the chorionic villi and sends them to a lab for genetic analysis.

Either way we are MORE THAN excited that Rad is going to have a little sister!!!

This is the first article of clothing I purchased so far….ALL I have to say is…SHE BETTER LIKE PINK because I foresee A LOT of it I her future!!!!

The FINAL Stretch!!!

2011-02-07T16:16:00.002-05:00

Football season is OFFICIALLY OVER!!!!! To me this means spring is RIGHT around the corner….and Rad and I CANNOT freaking wait!!

This winter has been rough on both of us and we are more then eager for it to be over.

I am sooooo excited for longer, warmer, fun-filled days “and for all my teacher friends to be off”!!!!

I have a feeling I will appreciate our spring and summer here in PA more then I ever have before!! Being locked in the house month after month really starts taking it’s toll on your sanity!!

With that being said I have to say it was worth the confinement….Although Rad is currently fighting of a mild cold “on his own so far” He has only been sick 2 other times this winter AND didn't need to be hospitalized. Compared to last winter that is freaking fantastic, so keeping him cooped up in this place seems to have been doing the trick.

I have heard from many other cf moms that the first 3 years are the toughest…so that means we have 2 down 1 to go!!! SUCK IT CF!!!!!!

Wordless Wednesday

2011-02-02T15:56:00.000-05:00

HELLO Communication GOODBYE Clutter!!

2011-02-01T11:06:00.001-05:00

Rad has turned into quite the little man (that KNOWS what he wants) lately!

He now knows what he wants, when he wants it, how he wants it, and who he wants to accompany him with what he’s doing “whether it be mama or dada”…there’s been several mornings now that he has flipped out when I went to get him out of his crib because he wanted dada to do it..Too bad for him dada was already at work so he didn’t have a choice!!

I have "kind of" been missing the days of being able to hand him something whether it be food or a toy and he be totally content with it, but I am MORE then happy that he is now able to communicate with me!!! It’s still a little frustrating because he knows what he wants but I can’t always understand his mumble jumble, but we ARE making progress “and quite quickly too” compared to a few months ago.

Although I do love that he is starting to have a mind of his own, trying to negotiate with a 21 month old is not always easy!!!!

My little Diva Dude even has a list of things that he requires on a daily basis!!!

Rad’s List of Demands!!

Thanks to when my mom watched him while we were away last week, he now HAS to sleep with the book we read him before bed. It’s actually funny to watch him in the video monitor paging through it before he eventually falls asleep due to the fact his room is so dark I know he can’t actually see what he’s looking at!

He requires blueberries with every meal. I swear this kid is going to turn into a blueberry one of these days!

He cannot leave the house without a toy car or two. (Two’s MY limit!)

He ONLY likes wearing his car pj's, but since he only has 3 pairs and his mommy HATES doing laundry that doesn't always happen!

He only ever wants to watch the show Chuggington “which he calls choo choo” and the movie Cars. I do sneak on Sesame Street “for educational purposes” once in a while, and although he does freak out at first, he usually settles down and starts watching it.

He still requires his milk to be be heated up before drinking it..I have NO CLUE when this is going to end!!!!! But if it makes him happy I can definitely deal with it!! I mean what’s better then warm milk?!! YUMMMMMMM (jk)

Operation Declutter was a SUCCESS!!!
Yesterday I decided to clean house. I was completely overwhelmed by ALL of Rad's toys taking over my house AND I was beyond tired of cleaning them up over 50,000 times day, so I got some garbage bags and packed up the most annoying ones..Pretty much anything that consisted of more then 4 pieces “except his lego’s which he LOVES” is now sitting in our basement waiting to be listed on craigslist!

I ended up filling 2 garbage bags plus a few toys that were too big to fit in them. The craziest thing about it is that the kid hasn’t even noticed they are gone yet!!!!!!! It really does make a world of difference. Not only can he find the toys that he really likes much easier, he’s been up for over 3 hours and my house doesn’t look like a tornado went through it, AND the best is…I haven’t stepped on anything yet almost killing myself or "almost" cursing outloud!!!!!

A clean clutter free house makes me a much happier mommy!!!!!

Rad waving goodbye to all his old toys!!!

Holy Cars!

2011-01-31T14:05:00.001-05:00

As most of you know, Rad has a HUGE obsession with cars…Not only with the movie “which we watch almost every single day AND sometimes if I’m lucky (sarcasm) we get to watch it TWICE in one day”!! He also loves his matchboxes, with any sort of vehicle driving past our house he will stop what he's doing and point to it, he loves any type of book with a car on it, so let's just say....pretty much anything that has tires totally fascinates him!

He may not know his alphabet yet, but he can pretty much name every vehicle there is ranging from a helicopter to an ambulance!!

This weekend was the Philadelphia Auto Show and not only did I want to bring Rad there because of his love for cars..I was also VERY MUCH wanting to get him out of the house…The poor kid has been cooped up for weeks!!

As you can see from the pictures below “which I took A LOT of because I’ve been slacking lately” he had a BLAST!!!

These pics are from before we left…I tried to get him to pose nicely for a picture and as you can see he has already devloped and mastered the "I would rather be difficult" attitude…hmmmm I wonder where he got that from?!??!!!

I’m sure my mom could answer that!!!!

Rad patiently waiting in line for his turn to sit in the car..

When it was his turn...he climbed right in and requested that his Dada to close the door

sitting there chilling like he was the coolest thing on the planet!!!

Rad spotted this car that he really liked….but there was a gate in the way.

Well, that sure as heck wasn’t gonna stop him!!

After trying to get a nice pic of him all day this is the only way I could get him to pose for the camera!!

checking out the storage space!

just sitting in the car chilling..I seriously think he would’ve sat there all day if I would’ve let him..I now know where to put him when I need peace and quite AND I can even strap him in!!!

Rad was NOT happy that he couldn’t walk up to this car and actually threw a temper tantrum!!

Rad and I posing in my FAVORITE car EVER...A BMW X5 which hopefully one day I will own... Boy do I really have to start playing the lottery!!!!

climbing in the truck by himself!!!

Once again requesting his Dada to close the car door so “I guess” he could get the full car experience!

So that was our day yesterday….I’ve NEVER seen Rad have so much fun!!! I really don’t know what it is about cars that captivates him so much, but I LOVED seeing him enjoy himself like that!!!!

brrrrrr!!!

2011-01-28T13:41:00.001-05:00

The hubs and I just came home from a nice WARM relaxing getaway to Florida and I can’t help but ask myself, as I sit here typing away by the fireplace freezing my booty off, “WHY in the heck do we torture ourselves with such cold miserable weather when we could be living in such a nice, warm, sunny state!?!

This trip was JUST what I needed…I’ve been suffering from MAJOR cabin fever lately so getting away for a couple days felt great!!! We even got stranded there for an extra day because of the snowstorm that hit the northeast and I’m not gonna lie..I was pretty darn excited about it!!!

I was nervous at first about leaving Rad considering him and I are together 24/7..I really thought for us to be apart for a couple days would consist of some major separation anxiety on both of our ends!

Knowing I left him in great hands with his Mimi “my mom” really put my mind at ease and once I walked out the door I wasn’t worried at all and automatically kicked into relaxation mode. As far as it went on Rad’s end…I don’t even think he noticed I was gone!

It was WONDERFUL not having to do treatments for 5 WHOLE DAYS…I can’t even begin to explain how good it felt to get up every morning to peace and quite and not have to worry about medications, treatments, planning meals, cleaning up toys, etc, etc, etc… But in the same breath I am MORE than happy to be home with him now, doing treatments, playing with and cleaning up toys, and watching his favorite shows!!

But once again I ask myself….WHY when I could be looking at views like this in Miami….

Or this in Key Largo…

Do I choose this in PA?!?!!!!

I think it’s time I seriously start playing the lottery!!!!!

I LOVED coming home this this though!!!!!

Thanks Mom and Radek!!!!

Wordless Wednesday

2011-01-19T11:32:00.002-05:00