PFT Update & Pics of the boys

If you recall, my PFT's had dropped after the boys were born. Five weeks ago they were down 6%. The drop was due to a stop in exercise and lack of adhering to a twice a day treatment regime. I was put on cipro for 3 weeks to see if it would boost my PFT's. Go figure, the week before my clinic appointment I injured my ribs playing at the pool. I couldn't give a good effort on my PFT when I went back after the 3 weeks of cipro. My FEV1 was 59%, which was down 1% from where it was before the cipro. So after two weeks of letting my ribs heal, I went back yesterday for another set of PFT's.

Last week I was feeling very congested and like I may be having an exacerbation and need to be admitted. However, if this was the case, I would fail my screening appointment for the Phase 3 trial of ivacaftor and lumacaftor, which was today. SO, my doctors wanted to see me and possibly postpone my screening appointment so I could make sure to get into the study (barring nothing else causes me to fail the screen).

My FEV1 was 63%. A far cry from where I would like to be (>70%). It's up nonetheless. This means I should be good to go for my screening appointment today! Whoo-Hoo! Here's to getting into the study and getting the "real deal!"

I'll leave you with some pics of the boys!







3 Month check-up

The boys had their 3 month check-up yesterday! Monica and I noted when we were getting ready to leave how much easier it is to pack them up and go. When they were a month old and younger, it was quite the ordeal to go to the doctor or anywhere for that matter. We would try to feed them right before leaving so they wouldn't be starving in the middle of the appointment. Both mommy and babies did not do well nursing in public. We have made a point to get them out since they were born. After two vacations and carting them all over the place since they were wee little fellas, packing up and leaving has gotten very easy. It has paid off so far, getting them out of the house. Yesterday as well, I had forgotten about my 5-year old cousins last T-ball game. Both boys were tired and a little whiny from their shots, but we had them packed up and out the door in 5 minutes or so!

Anyway, back to the doctor appointment. Everything went great! Our doctor said the boys look great and are right on track with growing and developing! Every question they asked about development, we were like "Oh, they've been doing that forever!" :)

Let's see, what else have they learned. Jace knows how to suck his thumb. Jeriah can blow bubbles. Jace is close to rolling from his back to his tummy. Jeriah rolls onto his side and almost grabs his feet on a daily basis. He also likes to put his feet against something. No matter where he is laying he will twist himself to get his feet against something so he can kick it. Even if that something ends up being his brother, lol.

They both get more and more vocal every day. We love it! Yesterday morning Jace was laying in the office with me while I was doing treatments and cooing as loud as he could. He was putting everything he had into it. It was so cute!! I love hearing their voices!

Oh, back to the doctor appointment. Jace weighed 13 pounds 3 ounces and is 24 1/4 inches long. He's in the 20th percentile for his weight and 40th for his length. Jeriah weighed 11 pounds 10 ounces and is 23 1/2 inches long. He's in the 3rd percentile for his weight and 10th for his length. I call him my "skinny boy" all the time. He really isn't skinny at all, but compared to Jace he looks skinny.

They got their shots yesterday too. Jeriah cried until I picked him up and gave him some breast milk in a bottle. He calmed down really quickly. Jace screamed bloody murder and did not calm down very quick, lol. Poor little guy! It seemed like after the pain was gone he was crying/whimpering because he got his little feelings hurt. It was sad to watch both of them, but overall they did really good!

I'll leave you with some pictures and video!

 

 

 

 

Thankful Thursday: Healing ribs, Phase 3 & Spoiling sweethearts

It's Thankful Thursday time again! Time to take a few moments to be grateful for things in this life. They may be big, small, seemingly insignificant, but they all count. There are so many things we can be thankful for. Thankful for the invention of glasses, without which I wouldn't be able to see a foot in front of my face. So take a few minutes, read our lists and think about what you are thankful for! Then leave us a comment below telling us what you thought of! Let's get to it!

Monica's List:

Monica is still on a hiatus from blogging. The twins keep her pretty busy throughout the day while I'm at work. When she can get help during the day, she uses it doing laundry, dishes, cleaning, and showering, lol. That makes it sound like I do nothing to help, but I promise I do!

Jeremy's List:

I'm thankful for the body's ability to heal itself. Obviously this ability was given to us by God, our creator, but it's amazing when you think about it. The body itself truly is miraculous. So many things going on at once all working together to make the human body function. I found out Monday at my clinic appointment that I have no broken ribs (knew this already because it isn't excruciating pain). It's badly bruised with a lot of swelling across the front, side and back of my ribs. I've been taking Ibuprofen per the doctors recommendations to help with the swelling and hopefully make it heal quicker. It seems to be helping. I can cough a little harder now without doubling over from the pain or having to splint my side when I cough. I'm getting around a lot better and am no longer constantly uncomfortable. I'm hoping to go for a jog today! Looking forward to being back to 100%!

I'm thankful for research and trials! I have my appointment set up for my screening visit to see if I will for sure be in the Phase 3 trial for Ivacaftor and Lumacaftor. I'm very excited about this and hope I get in!!

I'm thankful for opportunities to spoil my sweetheart! I love getting the chance to make her feel extra special. I want to provide her with as many special moments as I can! This Saturday is her birthday!!! The big 2-4! I can't wait to celebrate it with her and make it extra special! She took the opportunity to get away with her dad, grandma and my dad today. Our dads were installing an air conditioner on her uncle's church and so Monica, the boys, and her grandma tagged along to visit with her uncle and his family. My wife is amazing! She takes such good care of the boys and is so patient with them! Not to mention all she does around the house. She gets up with them by herself at night now. By the time we put them to sleep and get ourselves ready and in bed, I'm lucky to get 6 hours (doesn't happen much) of sleep a night. I still get up at 5:00am for a set of treatments, do a set when I get home and have to do some kind of exercise in the evenings. As you can imagine that leaves only a few hours each night where I'm free. Only a few hours to help around the house, eat, shower, and spend time with the boys. It's pretty hectic from day to day. Our days are packed from sunrise til..... way past sunset, lol. Monica does A LOT! I'm so thankful for an incredible wife!

So, what are you thankful for today?!

I'm not alone

I had a clinic appointment today that was a follow up from 3 weeks ago. Three weeks ago I had a routine clinic appointment. My FEV1 had dropped form 66% to 60%. The drop was largely due to my sons being born. I'm not saying it's their fault by any means. I had stopped exercising completely and had been struggling to get 2 treatment sets in each day. It's my own fault for not prioritizing my health as numero uno. I was put on Cipro (an antibiotic) in pill form for 3 weeks to help combat the drop in my PFT's and started a strict regiment of two treatment sets a day with 3 days of running and two days of P90X a week.

If you read my Thankful Thursday post from last week, you know that a week ago I made a dummy move and hurt myself. I fell from the rafters above a pool and landed on my right side on the concrete. I was hanging from the rafters, not standing on them, so it's not as bad as it sounds, lol. My ribs have been seriously hurting me after re injuring them mowing grass last week. At clinic today they took an x-ray. No broken ribs (I already knew that though, it doesn't hurt bad enough) and they didn't see any fractures initially. They did however see that I have a large contusion (bruise) wrapping around my ribs with a significant amount of swelling. It's funny because there is no bruising on the outside. The contusion is deep. So, I'm to go back whenever I feel I can give a solid effort at my PFT's.

My FEV1 today was 59%. No improvement from last time, but no loss either. It's obvious I couldn't give a full effort at my PFT today, so they want me to go back, hopefully in a week or two, when my ribs are back to normal. We'll go from there. I am still coughing more than normal and coughing up more than normal. It seems to be much thicker than usual as well. It's extremely frustrating that after getting back into a routine of running and working out along with regular treatments, I hurt myself and mess everything up. I can't cough good without hurting, therefore can't get mucous out, which is NOT GOOD. While it is extremely frustrating however, I'm looking forward to recouping so I can get back at kicking some CF booty again!

It wasn't all bad news today though! I didn't break anything! (bruises heal much faster than fractures or breaks) The biggest and most exciting news to me is that I have the chance to participate in Phase 3 of the clinical trials of Ivacaftor and Lumacaftor!!!! I have DDF508 CF gene mutations, which the study is focusing on, and my doctor thinks I'd be the perfect candidate. It may be difficult fitting in all the appointments that are required when participating in a clinical trial of this magnitude, but how could I pass this up! It's HUGE!!! I was so excited when he asked me about it and handed me the packet! Hopefully I get accepted to participate and double hopefully I get the "real deal" pills and no placebo! This is super exciting news and monumental in my book! I really can't express how excited I am. I'm trying to contain it until I officially get accepted to participate.

I also learned this week that I am not alone in a couple things that happen to me concerning my CF. I was reading an article written about a buddy of mine who has CF and he mentioned a couple things that happen to him. I was surprised to hear that I am not the only one, lol. For example:

1. I am not the only one that coordinates eating with treatments and working out due to risk of throwing up everything I eat. I figured this happened to more people than just me, but I had never heard anyone mention coordinating eating with treatments and or exercising. Oh and showering too. If I eat a meal and then go do my vest and treatments, I am going to throw up. I cough hard. It's the only way to get those nasty secretions out. Cough, and cough hard! It's inevitable that I will gag a lot from coughing so hard, and if there's anything in my stomach it's coming out. So I do my treatments, exercise and shower on a fairly empty stomach, because throwing up is no fun. It's also a waste if you think about it. All that good food going down the drain. Plus you have to eat again after. :)

2. Secondly, is that I'm not the only one that coughs a lot in the shower. When I take showers it's like my body flips on the "Get the mucous out" switch. I cough A LOT in the shower and cough up a lot of junk! Again, I thought I was alone in this phenomenon. I still have yet to really explain it. My thought is that the hot water combined with the added humidity that builds in the shower moistens up the airways and mucous, causing it to thin out and move better. That's my official educated guess. Whatever the reason though I'm glad it works, and boy, oh, boy does it work! People have been at our house before when I was taking a shower that had never been introduced to a CFer and how we cough to get mucous out. Monica said they asked several times if I was ok. :)

Overall it was a good day. Plus I still get to come home to an amazing wife and two awesome boys!!! One of which learned how to really suck his thumb today and has not stopped trying and succeeding all day. We're in trouble. Anybody have any remedies besides hot sauce? ;)

3 Months Old

The boys are 3 months old today! The time has flown by so quickly. I was watching our IVF video last night, and I can remember that phase of our life vividly. We were very excited to get the process started but wondered if we ever would have children of our own. Fast forward 13 months from when we started the IVF process and we have 3 month old twin boys! We are beyond blessed!

Our little guys have grown so much in the past 3 months. When people told us there would be something new every day we thought it was just an expression. It really seems like every day they accomplish something new. Jace has rolled over a grand total of 7 times and he just turned 3 months old today. He has bumps on his bottom gums and you can see the white of his first two teeth under the gums. He drools all the time! :) They can now put their fists in their mouths with no searching required. Jace rubs his eyes with his fist when he's tired. Jeriah will rub his little face against your shoulder like a pig rooting in the dirt when he's tired. Jeriah has been pulling his feet up to his chest for a couple weeks and finally managed to grab one the other day.

I could go on and on about all their accomplishments! The thing they do now that I think Monica and I love the most is look at each other. Within the past week they have gotten to where they will really watch one another. Yesterday when I came home from work, Jace was in a stand up bouncer we have. I picked Jeriah up and held him right in front of Jace. They both kept looking at each other and smiling. It melts our hearts! We love that they have noticed each other! It's so neat watching them look at each other.

I'll leave you with a few videos and plenty of pics to show how far they've come in 3 months!

Happy 3 Month Birthday Jace & Jeriah!!! Mommy and Daddy love you veeeeery much!!!