Kalydeco......It May Just Help You!! Part 1

There are many of us in the CF community who have heard of Kalydeco, the magical pill and the Vertex Pharmaceutical Company by now. But if you have not heard about this because you have been living under a rock or are not that familiar with the exciting pill here is some background on Kalydeco. 

Kalydeco is the first drug available that targets the underlying cause of CF.  All the other therapies available for CF treat the symptoms of the disease.  So this pill is a real breakthrough!  Kalydeco improves the faulty gene and its protein product, CFTR.  As we know Kalydeco, is only approved for use on individuals who have the G551D mutation.  CFers who have the G551D mutation have the defective protein in the right place on the cell surface but it does not function correctly.  Instead, it acts as a locked gate which prevents the proper flow of salt and fluid in and out of the cell.  So what Kalydeco does is it unlocks the gate and restores the function of the CFTR protein.  This allows for proper flow of salt and fluids on the surface of the lungs.  By allowing the proper flow of salt and fluid, the mucus in the lungs is less sticky and thin. 

Kalydeco is not a cure in any means but it is something that will prolong life for years to come in my opinion.  In fact, the pill has shown to improve lung function, lower sweat chloride levels which in turn has lowered sweat test results, and has also helped individuals gain weight.  Basically, the people who have G551D mutation and are taking Kalydeco are living what I would call a “CF free symptom” life or mostly symptom free life.  But the thing is that Kalydeco has only been found effective so far to help G551D mutation which is about 4% of the CF population or slightly over 1,000 CFers. 

So what about all the rest of us who do not have a G551D mutation?  Well there is hope and it is really exciting to be reading about the research that Vertex has been doing.  For most of us in the CF community we have at least one copy of mutation DF508 and that is where a lot of the research is being focused on the DF508 gene more so individuals who have two copies of DF508.  The problem with the DF508 mutation is that the defective protein is not at the correct place on the cell surface and the gate is locked for the proper flow of the salt and fluid in and out of the cell.  Whereas the G551D mutation has the defective protein, CFTR in the right location but the gate is locked.  So in order for Kalydeco to work on individuals who have the DF508 mutation the cell needs to move the CFTR to the cell surface and open the gate.  We know that Kalydeco can open the gate but Vertex is still working on getting the CFTR up to the cell surface.  In fact, they have released some exciting data on moving the CFTR to the cell surface with a pill called VX-661 and VX-809 and then opening the gate with Kalydeco.  Here is the link for the news release for the the results of VX-661 and Kalydeco.

http://www.cff.org/aboutCFFoundation/NewsEvents/4-18-Phase-2-Combo-Study-Kalydeco-VX-661-Results.cfm

It looks like there will be a more clinical trials for both VX-661 and VX-809 and Kalydeco.   In the VX-661 study it has shown to have improved lung function by a whopping 9% and lowered sweat chloride levels in individuals who have two mutations of DF508 which is the most common CF mutation.  This is really really exciting and looks like the magical pill(s) will be looking for FDA approval in the near future.  I have heard as soon as 2014 that Vertex will be submitting and looking for FDA approval on VX-661 and or VX-809 and Kalydeco for individuals who have two copies of DF508.  I cannot wait for this day!!!

Ok, but wait there are still a good amount of CFers who do not have two copies of DF508.  In fact, I am in that boat.  But I truly believe if this VX-661 and Kalydeco combination will work on two copies of DF508 then it will work on people who have just one copy.  They may have to play around with the dosage and strength to get a “perfect” mix but it is going to happen, I know it is!

 

But my main reason for writing this blog today is to talk about some exciting things I have read about Kalydeco and possibly helping other mutations.  I became aware of this through a forum I read and leave comments on.  While scrolling through a couple forum posts I found one that interested me big time.  It had the wording of Kalydeco and 3849+10kbC->T.  I decided I better read this because I have one gene mutation of DF508 and the other is 3849+10kbC->T. In fact I even found a Facebook group that has members who have my same gene copies, WOO HOO!  When I started reading this forum and Facebook posting I couldn’t believe what I was reading.   I think this was one of the greatest finds I have ever found online and I am so excited that all my time and effort on forums is going to help me possibly.  As Maria says, I am addicted to anything CF related online and I guess this time it really is going to pay off. 

So here is what I have been spending a lot of my time reading and not blogging lately.  But I guess I have good reason!  I honestly, thought all along that Kalydeco could help me and my one gene 3849+10kbC-> because this gene does produce functional CFTR at the cell surface but the quantity of CFTR is affected.  I even asked my doctor when Kalydeco first made it to the market if it could help me or other genes.  His answer was that is the big question.  Well I think I am finding out the answer to my question and I CANNOT BELIEVE what I am reading.  Apparently, there is an actual research study that is being conducted at a Denver Colorado hospital testing the effect of Kalydeco (aka Ivacaftor) on lung function in subjects with CF that have residual CFTR function. My  3849+10kbC->T gene is in this group.

On the facebook page that I belong to, I was reading that Kalydeco is really helping people with my CF combination.  There are a few people who are in the study and another mom who has traveled from Italy to the USA to get her son on Kalydeco.  I honestly could not believe what I was reading.  The mother from Italy had said that her son’s FEV1 increased by 7 or 8 points and he was able to gain a good amount of weight.  I have also read that some people in the Denver study have also seen their PFT improve while on Kalydeco in the study.  All of this is really hitting home for me that the magical pill is within reach very very soon!

There are also other mutations that the Denver study is enrolling. In fact here is a list of the mutations that they are testing Kalydeco on and some of you I know who read this blog have a copy of one of these gene mutations.  CF Stinks I know you can participate in this study!!!  

 

CFTR Mutations associated with residual CFTR function or defective mRNA splicing include the following:

R117H, E56K, P67L, D110E, D110H, R117C, R347H, R352Q, A455E, D579G, S945L, L206W, R1070W, F1074L, D1152H, S1235R, D1270N, 2789+5G->A, 3849+10kbC->T, 3272-26A->G, 711+5G->A, 3120G->A, 1811+1.6kbA->G, 711+3A->G, 1898+3A->G, 1898+1G->A, 1717-1G->A, 1717-8G->A, 1342-2A->C, 405+3A->C, 1716G/A 1811+1G->C, 1898+5G->T, 3850-3T->G, IVS14b+5G->A, 1898+1G->T, 4005+2T->C, 621+3A->G, 621+1G->T

This link contains the clinical trial for the experimental Kalydeco below. http://clinicaltrials.gov/ct2/show/NCT01685801

So to summarize this very long post it looks like there will be a magical pill possibly for residual CFTR function.  The results of the Denver study will be posted in September 2013 which is very soon.  But if anyone wants to enroll in the Denver study they are still accepting patients.  It really is to bad that they are only offering this study in Denver.  But I have heard that Vertex Pharmaceutical will pay for your expenses to attend this study. 

I will leave with you a to BE CONTINUED blog because I still have not said if I will be participating in this study. I also have some other information on this study to summarize but I figured I better end it here.  So for anyone who is interested in this study or would like to know if I will be participating in this study let me know if you would like Part 2.  

 

 

 

Alayna at her 6 month checkup!

 

Alayna in her high chair for the first time!

 

Alayna 6 Months Old Today!

Today is a special day for you Alayna and for mommy and daddy! You are 6 months today! WOW, a half a year is in the books for you! I honestly cannot believe it has been 6 months since you have taken your first breath on this planet.  Where has the time gone?  Alayna, you have already enriched our life for the better every single day and we are so overjoyed to have you in our life.  One day, you will understand how precious of a child you truly are to us.

This past month you celebrated your first Easter.  In fact, you also dyed eggs with mommy and daddy for the first time.  You had no idea what was going on but you were diligently watching your cousin Kendal dye the eggs.  The Easter bunny did stop by your house and left you a basket full of baby teething toys, books, and clothes.  Your basket even has your name on it!!  Talk about a spoiled kid you already are.

You have accomplished a few milestones this month. In fact, you are growing up faster than I could have ever imagined.  Alayna, you know have two little teeth on the bottom and you let us all know you were cutting teeth.  We were shown that you can be a fussy baby but this is not a common thing for you.   You kept shoving everything and anything in your mouth to ease your pain.  I think you were going to draw blood on your thumb or toes because it seemed like that is all you wanted to do was suck your thumb or toes.  You never did get a fever though which was surprising but all you wanted to do was sleep, eat, and suck your toes and thumb.  Since you now have these two little teeth, your smile is always showing these little pearly whites.  It is beyond adorable.  Mommy and I both love your smile.  We have been told that your smile is your daddy’s.  You even have dimples just like me! In fact, people say you are daddy’s twin.  I hope that does change in the future though : )

Well know since you have these two teeth, we figured it was about time to introduce another food besides breast milk.  We have noticed you were getting fussier and fussier in these past few days and mommy and daddy thought maybe you were wanting more food.  It turns out you really were telling us you were ready to eat some food.  On April 12, we fed you for the first time with a spoon!  You had rice cereal for the first time that day.  You loved eating from the spoon and of course had no problem with swallowing the food.  Every time mommy would get the spoon full of rice cereal she would say “ here comes the airplane” you would get the biggest smile on your face.  In fact, once the spoon left your mouth you would take that right thumb of yours and put it straight into your mouth.  You had the cereal all over your face and all over your hand.  Alayna, you did not even care that it was everywhere either.  You just had a big smile on your face like you were asking for more cereal. 

On April 14, we decided to try actual baby food with you.  We got the jar of peas out and that first bite we knew you loved it.  You had a big smile on your face and held your arms out as to ask for more!  It seems that you prefer the baby food over the rice cereal because you ate the peas in no time.  Again, you did the same thing with your thumb.  As soon as the spoon was out of your mouth your thumb was right in your mouth.  You had another big smile with peas covering your mouth. ADORABLE!

Alayna, you seem to be getting bored just sitting in your chair or laying on your back on our bed or on the floor now.  We read that this would start happening in this time frame.  Sometimes, I will lay you down in your crib to get the diaper area prepared to change you and you will scoot yourself on your back to one side of the crib.  When the butterfly mobile is on your crib you will scoot to that side and try to grab the butterflies and pull them down.  Or you will roll from your back to your belly in the crib and just babble. 

You love to sit in this little rocker baby chair.  Just recently, you started to get bored in there and you decided that you can entertain yourself while sitting there.  One day mommy noticed you were rocking the chair all by yourself.  We both were shocked.  In fact you rock the chair like you are swinging on a swing.  You start to pump your legs and away you go with that big smile and happy voice.  Alayna, you already have one heck of a personality!

Speaking of personality, I will share a story about you that one day will embarrass you.  But it was really funny to witness this.  The other day we had you on our bed and mommy and daddy were talking and all of a sudden you pass gas! Mommy and I both looked at you as it was really loud and you turned your head to us with the biggest smile.  Your grin was from cheek to cheek.  I don’t know where you got that loud passing gas aspect from though!  I know one day when you read this you will be embarrassed but that is what a parent does, embarrass their child. 

There are a few things that you continue to dislike.  For one, you really seem to be developing a sense of boredom.  You will let us know if we are not paying attention to you enough by fussing or crying.  Then mommy or daddy will give you attention or pick you up.  If you are hungry you will let us and everyone else know how hungry and mad you are if you are not fed right away.  Also, when it is late at night, and you are passed out a sleep you hate it if we change your diaper.  You get this cry like it is the end of the world.  But for the most part you have very few dislikes right now in your life and WE hope that stays this way for a long time!

So with 6 months in the book we could not be happier in our life.  Mommy and daddy both could not imagine life without you EVER! There is just something about having you in our life that completes it. 

WE LOVE YOU ALAYNA! HAPPY HALF A YEAR BIRTHDAY!! 

Rice Cereal!

After the spoon is out its thumb sucking time.....

Time for some sweet potatoes. 

Look at that big smile and two little front teeth!!! 

 

 

 

Hypertonic Saline Anyone??

We have heard the benefits of going on vacation as a form of relaxation and a way to recharge the batteries and also how vital it is for our health.  But to be honest I didn’t realize 10 years ago how beneficial going to the beach was especially for someone with CF.  I would tell Maria I feel differently when I am at the beach.  I claimed I could breathe better and my lungs felt less tight.  I kind of just assumed it was because of being less stressed and I was getting more relaxation time in.  But I started to think more about this and I thought the benefits I was receiving were from the salty air.  It turns out I think I was on to something and I wasn’t making up the way I felt by being by the beach.  I told my doctor how I felt when I was at the beach and he told me that researchers were looking into the benefits of breathing in salty air.  This story takes place about 10 years ago before hypertonic saline was invented for CF.  I guess I could have been a researcher!

The research into the benefits of breathing in salty air started from surfers in Australia who told their CF doctors that they felt better after surfing.  That their lungs and chest felt so much clearer once they surfed.  In 2006, there was an article published in the New England Journal of Medicine detailing the research and the findings from breathing in what is now called hypertonic saline.  The conclusion was inhaling hypertonic saline produced acceleration of mucus clearance and improved lung function.  The researchers also found that this treatment may protect the lungs from other bacteria and infection and prolong lung function.   They also discovered that hypertonic saline solution was also helpful in limiting the number of lung exacerbations.

http://www.nejm.org/doi/full/10.1056/NEJMoa043891#ref19#t=article

As I stated I guess I was not dreaming of how I felt when I was at the beach. In fact, there are some other cysters and fibros who feel the same way I do.  Check out this forum site to see what others are saying about living by the ocean.  Maybe we all should move to the coast???  Maria and I really thought about moving to North Carolina to live by the beach.  It may happen one day :) 

http://www.cysticfibrosisconnect.com/discussions/690-is-your-life-expectancy-longer-if-you-live-by-the-ocean

So anyway, I really really LOVE HYPERTONIC SALINE! I guess that would be an understatement though because I truly feel a lot different since I have started this lovely salty solution.  But before I get into more details about how I feel I would like to give a little explanation of how this salty solution works for those of you who are not currently using it. I hope you consider using HTS if you have never tried this before.

First off I am not a doctor or a trained sales representative for HTS so here is my own explanation.  As we know in CF, the lung tissue in our body has abnormal transport of the chloride and sodium which leads us to have thick sticky mucus.  Basically our lungs are not hydrated enough at all due to this abnormal transport.  So when we breathe in aerosolized hypertonic saline, the saline which we breathe in has a much higher concentration of salt than normal body fluids. The saline draws water from the cells into the airways making the lungs hydrated.  This extra hydration mixes with our mucus and makes it thinner and easier to cough out.  As my wife says it’s like brining a chicken or turkey!   No wonder why I love salty foods!

I started using HTS about 8 months ago as my doctor suggested giving it a try after he was persuaded by one of the founders of this magical stuff.  I can honestly say I wish started using HTS a long time ago because I feel a lot different.  My lungs are so much clearer and I no longer have chest tightness at all.  As far as HTS improving my lung function, it has slightly.  I am talking a few percentage points in the FEV1 range which is good but the biggest thing is that I have not really dropped my FEV1 score since I started it.  Also, I have not been on any inhaled antibiotics for over a year now and I can point to HTS being a big player in that solid streak.  Since I do not live by the ocean HTS is the second best thing to the inhaling of true salty air.  Maybe we could convince doctor’s and insurance companies that we need quarterly trips to the beach!! But until that day does happen I will be using HTS everyday.  So for those of you who are not currently using HTS maybe you should talk about adding it to your airway clearance regimen when you go to the CF clinic.  

Here is what the cystic fibrosis foundation says about HTS.
http://www.cff.org/treatments/Therapies/Respiratory/HypertonicSaline/

Thumb sucker!

Passed out!

A Month Full Of Thankfulness & Gratefulness - March Style

Every month, I will be challenging myself to create a post of what I am thankful and grateful for in life. This will allow me to reflect on all the POSITIVE that is happening in my life. As we all know you get nowhere when you focus on the negatives in life.  So here is what I am thankful for this month! HAPPY EASTER!

• Alayna celebrated her 5 month birthday this month.  She is continuing to grow and change in front of our eyes.  She actually cut her first two teeth this month and WE learned about having a fussy baby for the first time.  Poor girl has been in a little pain cutting those two big teeth on the bottom.  Here is Alayna's 5 month post.

• Maria had a few medical tests this month and I am so THANKFUL that the results were normal.  As many of my readers know, Maria really hasn't felt like herself ever since the birth of Alayna.  I am hoping we are now going down the path to better health for her.  There is nothing fun about seeing the woman you love not feeling good!

• I celebrated my 28th birthday on March 23!!! Woo hoo! Birthday's are very special in this community as I believe it shows we are staying compliant on treatments and taking care of our health! This year my cake said "Happy Birthday DADDY!!" That was a special feeling seeing DADDY on the cake and not John. 

• I am so THANKFUL that Maria continues to breast feed Alayna.  I know weird right?  But I have to say Maria is one tough cookie and never gave up breast feeding as she had mastitis (basically a large lump in the breast).  I got the opportunity to experience bottle feeding Alayna as Maria had these medical tests performed.  I can tell you it was a nightmare.  Alayna loves being so close to her mommy and no bottle will get between that.  So for anyone who is thinking about breastfeeding their little baby Maria and I BOTH highly suggest it!!! Breast is best because there is no cleanup whereas bottle feeding is way more time consuming :)

• Winter is almost over and I am so thankful spring is on it's way.  WE both are so tired of this cold weather here.  WE are looking forward to being outside a lot more with Alayna.  Soon she will be walking around I can tell.  But first she still has to crawl :)

• This past month I continued to spread some awareness and shed some light on this disease to newly diagnosed parents.  There is nothing like lending a nice comment and story about this disease!  It is my goal this year to be more active in this community and I have been doing it every week.  It is almost an addiction when you help just one person you want to help another.  I LOVE IT!  These parents have been showering me with comments and appreciation that I do not deserve though.  I am just doing what I have always wanted and being me!!

• Sometimes life is weird........The other day we were at the grocery store with Alayna and this woman stopped us and asked to see our baby.  She loved Alayna!  Then she started talking about her own family and how she had twins and anoher child.  Immediately, Maria and I both thought she did some kind of fertility treatement.  WE could tell just becaue how she was talking about her own children and how much she loved Alayna.  She then started talking about her fertility process and how bad she wanted her own child.  So where am I going with this.....I am thankful that there are people out there who understand the troubles and frustration of fertility.  There is no one on this planet who will understand fertility problems unless you go through them.  It was really nice to see Maria and this lady connect on many levels with fertility and life experiences!! For any of you out there who are struggling with fertility WE pray and wish for you the opportunity that we were granted.  NEVER GIVE UP!!

• I am thankful that some exciting things are happening in our CF community.  Here are a few of the great things that are happening medical research with Vertex, some of my cysters and fibros having babies or will be having babies, possible adoptions about to take place, the list goes on and on.  It really is a great time in this community as many of us are defying the odds everyday.  I want to personally congratulate a cyster of mine Cindy Baldwin and her husband on the birth of their baby Kate!!! She is beyond adorable. I am looking forward to more photos of her!!!!

• We celebrated a wonderul Easter with both sides of the family. Alayna had no idea what was going on but it was great to see everyone :) She was not fussy at all and loved to be around everyone. We are so thankful for a happy baby and we couldn't ask for anything more!!

• March has been another month of 100% compliance for me, Woo hoo!!! Since starting this monthly thankfulness back in February I have not missed a single airway treatment.  I have had 2 full months of tracked airway clearance and I have been 100% compliant! I just looked at my Vest and it says 222 hours.  When I ended the month of February I was checking in at 200 hours.  I guess that puts me close to almost an hour a day being hooked up to this Vest! Take that CF and here is to looking to another month of 100% airway compliance :)

Just like last month, this list is really long and could continue but I will end it here.  So with all that said........What are you thankful for today?  We all have so much in our life to appreciate and be thankful for.  HAPPY EASTER!!!

Alayna and her bottle! She would rather have the real thing :)

Alayna loves those butterflies!!

Alayna and her blue jeans!

Look who is the Easter bunny :)

Hey where is the candy???







 

Time to dye eggs!!

 

 

Mommy and Alayna Egg dye time!

 

 

Happy Family :) 



 

Happy Birthday To.......ME!!!

This past Saturday I celebrated my 28^th year on this planet! Woo hoo!!! It was a great day surrounded by my beautiful wife and daughter and various other family members. There truly is nothing like spending the day with the ones who love you.
 
This is how I feel about my birthday and any day for that matter.  I guess I would say that my birthday is a little more special than any other day though……….Every day I get to spend on this planet is a blessing. Not one single day is guaranteed and I honestly try to think this way every day I put my two feet on the ground. When you have a disease or an illness it shapes you as a person. You start to see the world differently as you age and mature. To me, I think I matured a lot faster than most people I went to school with.  

I have made it 28 years on this planet and there is a reason for that. I learned at a young age that I was ultimately responsible for my own health. As much as my parents would enforce me to do my airway treatments it was up to me to throw on that vest and get them done. Personal accountability was something I learned when I was very young and it has shown that it does pay off.  I made my health my life.  If it wasn’t for my compliancy to my own health I do not think I would be sitting in the position I am today celebrating my 28th birthday. 

I set many goals and dreams for myself and I never let CF stand in the way of any of them. When I was younger in my teens I had dreams just like everyone else.  I wanted to graduate high school, attend college, have a career, get married to the woman of my dreams, own a house, and even start a family.  When I step back and look at those dreams as a teenager I can honestly say I have seen every single one of those dreams come true.  But I didn’t just wake up one day and all of these dreams came true.  It has been a journey and a lot of small steps were taken to reach each and every single one of them. There were days full of happiness, sadness, blood sweat and tears but it was in my control for the most part to make these dreams come true.  Trust me, I didn’t get my wife to marry me over night!! 

I still have many goals and dreams to accomplish and I will be flipping that 28 around in my lifetime.  I will be seeing the ripe old age of 82.  There is no doubt in my mind I will put myself in the best possible position to see that age because I owe it to my wife, my daughter, and myself.  I will only get there by continuing to make my health my life like I have these last 28 years!!!

 

The reason I have to put my best footward is above!!

 

Notice the cake says Daddy and not JOHN!! Pretty awesome feeling :)

 

 

 

She is ready to eat

I still cannot believe Maria had a baby 5 months ago!

 

 

Thumb sucker!!

 

Shh she has cake on her face. 

 

 

 



 

 

Responsibility & My CF Responsibility

“In the long run, we shape our lives, and we shape ourselves. The process never ends until we die. And the choices we make are ultimately our own responsibility.” -Eleanor Roosevelt

Here is the definition of responsibility from dictionary.com……………
the state or fact of being responsible, answerable, or accountable for something within one's power, control, or management.

There are so many individuals that are struggling with accepting personal responsibility in their life. Every day we get out of bed we have a personal responsibility for our self and also others. For instance, my responsibility is to try to give my best every day as a father, husband, son, friend, employee, CFer, and the list goes on. In order to be able to provide my best day in and day out I have to accept responsibility for my own actions. Every choice or decision I make is my own responsibility and that’s how life should be.

There will be people who blame others for their choices and decisions they make every day. When you blame others for what you are going through, you are denying personal responsibility. I find this unfair to blame anyone BUT yourself. If something isn’t right in your life and needs to change, you’re the only one who can make that change. Blame yourself and ultimately do something about it.

The path of anyone’s life is directly proportional to the strength of your choices. Everyone has a choice in life. To say you do not have a choice is to relinquish all responsibility and control you have over your life. This basically sums up you do not really care and you give up on life. If you give up you are throwing in the towel on life. NO ONE ELSE IS TO BLAME!

As a CFer, I have a personal responsibility for my health. Not only do I have a personal responsibility for my health, I have to put my health first because without it I cannot take on my other responsibilities as a husband, father, son, friend, and employee etc. That is why it is my responsibility to stay on top of my doctor appointments and treatments. If I am not feeling 100% I need to slow down and reevaluate what I need to be doing differently.

Ultimately, I am in charge of how much I put into my health every day I get out of bed. I have a choice to make if I am going to do my treatments or take a day off. If I am making that choice to not give 100% commitment to my treatments, then I only have myself to blame. There have been times and there will be times again when I do not feel like doing my airway treatments. I have come to understand that it’s not just me who will be hurting from my choices I make. My wife and I are counting on me to be around for our future as a husband and wife. WE still have many dreams and goals WE want to accomplish. The only way to be around to accomplish these dreams and goals is to put my best foot forward every day.  Also, our daughter needs to grow up knowing her father and that is one of my greatest responsibilities to be there for her. I plan to be there when she graduates high school, I plan to walk her down that aisle, and hopefully if she chooses to have children I will be there to be the grandpa to her child.  If I can do anything in my power to be there for her I will do it and that is the greatest responsibility I will ever have.These two girls in my life require me to give it my all in life. They will benefit from the responsibility I take on the decisions I make today as these decisions will be shaping our future.

How do you define your responsibility in your life?  We all have people or goals that can give us responsibility in life.  Responsibility comes in all forms in life so find something today that makes you want to be committed to your health.  We only have one shot at life and hopefully you are taking responsibility for this one shot. 

One’s philosophy is not best expressed in words; it is expressed in the choices one makes…and the choices we make are ultimately our responsibility. – Eleanor Roosevelt

 

These two girls provide me with the determination every day to put my best foot forward!

Alayna 5 Months Old Today!

HAPPY ST. PATRICK’S DAY! You are now 5 months old Alayna. WOW! I can hardly believe in another month you will be 6 months! Where has this time gone with you???? It really has been a great 5 months having you in our life baby girl.  You are so special and not a single day goes by that WE don’t consider how blessed we are to have you in our life.  Sometimes I look at you and wonder what WE did to be given this blessing.  

So that brings me to what you have accomplished this past month.  You have found out that you are getting more and more flexible.  This flexibility has lead you to discover that you have feet with toes.  Not only do you grab your feet, you are able to put your right foot in your little mouth of yours.  I know one day when you read this you will be embarrassed but I guess this is a normal thing to do.  In fact, you actually put your toes in your mouth and use this instead of your famous thumb.  But you are very funny because you only want your right foot.  I guess it’s easier for you to grab this foot?? Or maybe you will be a righty?? Honestly, I think you are going to be a righty since you prefer your right thumb and now right foot.  I guess time will tell though. 

Last month, we finally got you on your tummy! Yes, I know we were a little late on this but I think that is because you really hated to be on your tummy.  You would cry as soon as we flipped you on that belly of yours.  But this past month you have loved being on your belly. I guess you had a change of heart.  I have noticed that you were rolling to your side more and more.  I knew it would only be a matter of time before you were ready to roll from your back to your tummy.  On March 7, you decided that you would show us that you were ready to roll from your back to your tummy!  Your mommy and I left you on a blanket and stepped out of your room for less than 30 seconds and we came back to find you on your tummy with your head held high!!! Mommy and me were so excited we started calling grandmas and everyone to tell them you reached a big milestone by rolling over.  You have the biggest smile when you are on your tummy and it melts our hearts. 

While we are on the subject of smiling, there is one person who brings the biggest smile to your face Alayna.  That person is the one and only mommy!! As soon as your mommy looks at you you get the biggest smile on your face.  Bascially, from cheek to cheek your grin is so adorable.  You have one of the biggest personalities WE have ever seen in a baby.  But we are not the only ones who notice this.  A lot of people tell us you are full of expressions from the people at daddy’s work to family to friends.  I guess we are going to be in for a little socialite in you baby girl. 

I have mentioned this before but I am still continuing to bring you with me during treatment time and you seem to love this.  You will start to wave your hands and kick your feet when I put my vest on and it’s so cute.  I guess you are getting use to daddy being hooked up to this machine that makes me sound like darth vader echoing when I talk to you and tell you I love you.  I can say anything to you and you get the biggest smile on your face.  I LOVE IT!!  

Alayna, you are also starting to laugh more.  Your mommy can get you to laugh pretty easily but we have found you are ticklish now.  If we talk or blow on your neck near your ear you will start laughing and it’s ADORABLE.  Those little toes of yours are getting ticklish as well.  You will kick and laugh when we grab your little feet and start tickling them.  WE love to hear you laugh it really makes our day!

As for the things that you dislike. You really really hate when you miss your feeding time.  I guess you love your food.  WE all can tell you love to eat by looking at your big belly. I guess you could say you take after your daddy.  But the last time we were at the doctor for your 4 month checkup you were in the 90th percentile for weight, height, and head size.  So you are very proportional!!  You know weigh 16 lbs and 7 ounces and it seems like you will continue to be packing on those pounds.  

You also are really not a fan when you don't get your nap time or adequate sleep.  Again you must take after daddy.  Usually, you will wake up between 9 and 10 am everyday.  with a nap late in the morning and another nap before daddy comes home.  Your bed time is between 10 and 11 pm and if you are still awake you are not a big fan of this.  There are very few things that you dislike which is great.  You have been one of the happiest babies and WE are so blessed that you are not a crier at all.  

Next month you will be half a year old!! WE cannot wait to see how much more you advance in this coming month.  I think we will finally start adding some baby food to your diet here real soon.  Maybe a tooth or a few teeth will be cut this coming month.  I guess we will see really soon! 

WE LOVE YOU ALAYNA beyond words!!!

Picture time...........

First picture on her tummy when Alayna rolled over!!

Another one on tummy!! 

Alayna loves to smile at mommy on her tummy!

Who is that pretty face??

Yummy toes!!!

Alayna & Mommy!

What can WE say Alayna loves to be in ONLY her diaper :) 

Big Baby!!!

 Happy St. Patrick's Day!

5 Months!!

Cutie!!

Bashful Smile!