Melts and Stretches

So, I mentioned Cullen’s dairy allergy.  In the time since we discovered this I have spent countless hours…okay, more like minutes, browsing the alternatives at the grocery stores. 

 

I found soy yogurt and for a while he was loving it.  He has since grown to love it less, but it is still a part of his weekly meal plan.

We also recently tried soy milk.  He is still breastfed, but I did want to try to transition him to at least one sippy cup of milk per day.  NOT going to happen anytime soon!  If he were parched and stranded in the desert he MIGHT drink a cup of soy milk, but not otherwise!

So, onto my most recent discovery…hence the title. 

Cheese.

Grated “cheese” to be exact.

Written on the front of the zip top bag: Melts and stretches.

Really???  Ugh!  Somehow, I don’t think that would taste anything like “real” cheese and I’m not going to be testing it out anytime soon!

So, folks, our dairy allergy having son WILL NOT be a cheese eater, unless:

1. He outgrows this as he gets older

2. He begs me to buy him a bag of “cheese” that reads: melts and stretches on the front!!

And this is what Cullen has to say about that:

Ellie’s first ballet recital

Our precious prima ballerina had her first ballet recital at the Cullen theatre (really!) in Houston at The Worthem Center.

It was…like something I have never experienced!

Those moms are serious about their dance!!!  And to say I was a little unprepared for the “seriousness” is a gross understatement!

I’m not going to get into the gory details, but I will say that I had to put together a ballet recital notebook just to feel like I was as “up to par” as the other mommy’s in the class! 

I signed up to be a room mom basically, because I felt like I needed to keep a close eye on Ellie and what germs she was exposed to.  Cullen was still being treated with TOBI and I didn’t want Ellie to accidently be paired up with or in a confined space with anyone that sounded like they may be hosting a respiratory infection. 

So, when I say this ballet thing is serious, I mean so serious that we had dress rehearsal on Friday until 9pm, we stayed in a hotel and then we had to be back at the theatre on Saturday morning at 10:30.

I thought it was all NUTS, but then when I saw my little girl’s face light up on that big stage (the same one the Houston ballet dances on) I knew it was all worth it.

I had to step back and remind myself that even though I thought it was all a little overkill, it was not about me.  Ellie had the time of her life!!!

A condensed version of the fun filled two days:

Hair professionally done on the way to dress rehearsal

Dinner at the aquarium on Friday

Check-in at the hotel

Make-up on and off to DR

Play with friends in the dressing room and wait to step onto the big stage.

Dance on stage at the Cullen theatre

Back to the hotel with one of her BFF’s Gracie

Room service after DR

Woke up on Saturday and got our hair and makeup done with Gracie

Off to The Worthem Center to dance!!

Daddy met us in the Lobby with flowers for our little ballerina!

Ellie had a magical day and I think I am now ready to embrace the ballet world with our little miracle!

I have to write this down because it is a moment I never want to forget.  When Ellie was born all of the stereotypical dreams flew out of the window and the only prayer I had was that she would live.  When they discharged her after only 6 weeks in the hospital I was grateful because I never expected that to happen.  When Ellie began to walk, talk, eat, play, laugh, dream, display affection, show interest in activities, it made my heart swell with gratitude.  I have never EXPECTED Ellie to do anything, but for every single milestone that she reaches I am thankful to our God.  When Ellie stepped onto that stage and danced in front of hundreds of people I was proud.  I cried.  A LOT.  I think every tear that came out of my eyes was out of thanks…it was the first time I ever watched my little girl do something that I dreamed about her being able to do one day.  There were days I didn’t think I would ever be in the position to watch my baby girl dance.  That dance was a beautiful moment in our lives.  

I am so proud of you Ellie Grace!  You were a true ballerina on June 4th and I can’t wait to watch you dance every day for the rest of my life.

With all of my heart forever and ever,

Mommy

He is still gone…

Today is June 15, 2011.

Today is the day our world stopped turning 4 years ago.

Today is the day we gathered as a family, bathed, prayed, and held our perfect little hero, Bennett, in our arms as he took his last breath.

Today can never come…or go…without anxiety and tears.

The timeline is forever in my mind.  The outfit I wore still hangs in my closet.  The music that we played in the car…Lamb of God…still plays in my head.  The matching outfits that Ellie and Bennett wore that day are still neatly packed together.  The grief, four years later, is still as painful as it was that day.

 

Our son died.

Those three words still shatter my heart into a million pieces.

 

But, I haven’t spent these last four years feeling pity or constantly asking God, “Why us”?

I have had a lot of moments where I did wonder why…but, I am thankful that one of many blessings that came out of Bennett’s life and death would be my walk with God. (and knowing that I married the absolute right man to go through this life with!)

It is so easy to find yourself clinging to faith when times are tough or in times of need. 

Around the time of Bennett’s death, when the “needing God to perform a miracle” was over is actually the time I found myself hearing and feeling Him more. 

The tears and grief are just human. 

Time passing doesn’t mean we should feel less grief or more healing.  The growing and believing that none of this was a mistake is what matters the most to me.

So, today even when tears fall and we might find it hard to breathe, our world won’t stop.  The grocery store will happen.  Ballet will happen.  And placing the casket spray above our little boy’s body will happen.  The balloons will go up and we will all go to dinner.  And tomorrow this will all be our yesterday…again.

 

We love you and we miss you, Bennett David, and we can’t wait to hold you again one day.

I do not cease to give thanks for you, remembering you in my prayers.

Ephesians 1:16

Blessings,

Angie

Cullen’s First Birthday

On June 4th our little boy turned ONE YEAR OLD!  I truly can’t believe that an entire year has passed since I held that tiny (full term) baby in my arms…and carried him while we were wheeled out of the hospital together. 

(One year doctor visit)

Dear Cullen,

Your birth was a dream come true for me.  Further proof that God has amazing plans for all of us in His own time…you are proof of His supernatural grace. 

(Aquarium visit, June 3rd dinner before dress rehearsal)

Your first year of life has been full of changes and it was a blessing to be here with you every day to see them. 

(Trying on last year’s bathing suit…funny!)

Your first smile melted my heart.  I remember the day like it was yesterday. 

Rolling over, sitting up, crawling and those first steps all brought tears to my eyes. 

You started cutting your teeth at 5 months and WOW that was no fun for any of us!

You gained weight so fast in the first 6 months (19 lbs) that we thought you may be a little chunk by 12 months, but you slowed your roll and ended the first year weighing 22.6 lbs. 

(The blue birthday cake that daddy picked out)

Some of my favorite moments with you are the quiet times when Ellie is sleeping and Daddy is at work and I can just snuggle you.  At a year old you still love mommy to snuggle you!

You have a favorite blanky and I love it when you try to carry it with you around the house…it is a lot bigger than you are!

You love our doggie Bo!  You think all dogs are named Bo!!!  He lets you pat him, kiss his ears and sometimes (when I’m not looking) you even try to ride him.  He’s not such a fan of that!

(The boy and his blanket)

You do not like strangers and you have an awful look that you give to anyone that says “HI” to you.  It’s embarrassing, but deep inside I think it is hilarious!  You have such a strong attitude!

You do this funny thing where you take off running in the house and you put both of your arms behind you.  If we tell you to stop and come back…you run faster…and laugh while you defy us!  

(Triumph!!!)

You have been fascinated with balls since you started playing with toys.  Ball was one of your first words and you have known how to throw and “catch” since you were about 7 months old.  Now you love to kick the ball outside or through the house.  I can’t wait to see what you love doing when you get a little older…sports would be my guess.

At one year old you refuse to let us feed you.  It’s annoying (for us), but I am so happy that you are learning so much SO FAST!   You know how to use a fork and spoon correctly and if we give them to you during a meal you will not use your hands at all. 

You are a great eater.  Last night, you ate steak, potatoes and corn for dinner!  Just like a little man!!  You have dropped into the 40% as far as weight in concerned and you are only in the 38% BMI, so gaining a few pounds has become your job.  We started giving you the baby food desserts/fruits mixed with cereal and you really like them. 

You have been drinking from a sippy cup since you were 5 months old.  You have never had water or juice from a bottle.  I am so happy that you love your cups so much!  We just gave you soy milk last week for the first time and you basically took a sip and that was it!  I think if it were an emergency you would take it, but you were definitely not a huge fan.

(T-ball and playing race car)

You love to read books and right now Clifford is your favorite!  Your first favorite book was a non-fiction about dolphins and then you changed to a book about trains. 

(Our little guy)

Funny story about your birthday weekend: Last year, we (I) decided to have you on Friday, June 4th.  Why?  Because I was contracting every 3-6 minutes and I was selfish…I wanted to see you!  However, this meant that we would be having you the very day of Ellie’s first ballet recital dress rehearsal.  We thought this wouldn’t matter and that the grandma’s would still take Ellie to her recital.  It didn’t work like that!  They wanted to see you, I wanted to see her and so, we scrapped the whole recital.  Come to find out…this year the recital was on the same weekend and the SAME day as your birthday.  So, my little man, forgive us, but we decided to leave you with Blakely and go to Ellie’s recital on your special day.  I know you will never remember, but I still feel a little guilt for doing that!  We made up for it with an obnoxious blue cake and I promise a fun party with your “friends” in a few weeks.

(Haircut #4)

Cullen, you are a miracle to us.  Your daddy and I love you more than words are even capable of expressing.  You bring immeasurable joy to every single person in this family.  Your smile and bright, soulful eyes are a daily reminder of the millions of prayers we sent up before being blessed with you. 

I am in love with every inch of you, Cullen Spencer Kahl!

 

I love you with all of my heart forever and ever,

Mommy 

Cullen and TOBI

It wasn’t always this easy folks…but, here is our little guy and his tired parents during one of the many treatments.

Photo credits: Ellie Grace Kahl!!!

Blessings,

Angie

My Mother's Day 2011 and CF news

My Mother's Day this year wasn't all about the church service I'd been looking forward to for months.

Or the family pictures our church takes every year on this special day.

It wasn't about the fantastic meal (my husband made yummy prime rib), or the matching outfits (that I still made everyone wear for ONE picture), or the pretty flowers.

It wasn't even about the beautiful sapphire ring my princess gifted me with...

My day was simple.
My day was beautiful.
My day was spent at home enjoying the miracles that ARE my children.

We found out a few weeks ago that our sweet little man was diagnosed with pseudomonas. We were told to avoid anyone that might be or has been sick, so church was not an option. Also, as random as this may sound... there are actually two other kiddos at our church with CF, so we would be a danger to them as well. Our last 26 days have included TOBI treatments twice a day at about 25-30 minutes each, bloody noses, a sad sounding raspy cry, diarrhea (which may be unrelated, but it started with TOBI and hasn't stopped since...poor baby).

Psuedomonas is ugly. We have known that eventually one of the three of us would likely culture it, but never did I think it would be my tiny guy! Ellie didn't culture it (as I pat myself on the back for being a mommy that runs a pretty sterile household!) which was great news. So then, the concern became about me. I hadn't been to clinic in...well, let's just say it had been awhile. I was feeling good, I thought, for having two little kids and running around like crazy every.single.day!

Cullen and Ellie's CF doc demanded that I go to clinic and get a culture done to check me for psuedomonas asap. So, I called the next day and I was at clinic the very next day! Can you sense the urgency here...

Weight check...depressing!
Moment my doc saw me...I got scolded!
PFT...AWFUL!

My FEV1 dropped 12%! Which leaves me at 84% (I double checked to make sure I am documenting the correct numbers for future reference) lung function. WOW. I went from 96% to 84% in a matter on months...albeit, several of them spent in a bed, but that is just plain scary!

My doc is awesome. And a super honest genius in the CF community. She said plainly, "If you would do your treatment you wouldn't be in this situation. I'm not going to worry about you, you will get back on track...BY DOING YOUR TREATMENTS"!!!!!

So, I got a new 50 psi compressor (which blows up a kiddie pool in 2.2 seconds) and all news meds...if you add my treatment times to Ellie's and Cullen's we are busy for almost 2 hours twice a day! I couldn't get a good sputum culture, so we did a swab which didn't show psuedomonas, but I am under orders to produce a better "glob" of the good stuff and bring it to the lab.

In all honesty, my CF clinic was a wake up call for me. Get healthy, so that all of the Mother's Day to come can be about the matching outfits and family pictures at church. (Totally kidding, but I have to have humor in the midst of this craziness)








Blessings,
Angie

In two days…

My precious little miracle man will be ONE!!! 

It has been a true blessing to wake up every single day for the last eleven months next to my two babies.

This is a snapshot of Cullen at almost 12 months old:

He is walking!!!   Everywhere!  I pray daily that he suffers no permanent damage from all of the head banging that occurs from his repeated falls...he is ALL boy!

He climbs on EVERYTHING he can lift his ten inch long leg onto!  Diaper boxes, his train, the chair in the office!!  It is going to give me heart failure…but, he is so proud of himself that I just laugh.

He is pretty much over all baby food. He eats waffles, any and all fruit, hot dogs, pasta, squash and zucchini, and prety much anything else you put in front of him. He drinks water mixed with prune juice like a big boy from a cup and almost never takes a bottle. He still nurses about four times a day. We are almost sure that he has a milk allergy and the result from giving him dairy is a stinky, vomit mess. Poor guy!  We tried soy yogurt and he loves it!  Daddy is in the process of getting a non-dairy recipe for his cake this weekend.

 

At CF clinic last month he weighed 22 pounds. I was expecting him to be bigger, but I think the walking combined with his transition out of baby food has slowed his gaining.

He is in a size 4 diaper and wears 12-18 month clothes. He has three new pairs of big boy shoes in size 5 for his 'Kahl' wide feet!!  It is so much cheaper to buy for boys!!  He has three pairs of shoes to wear with everything and I think Ellie has a different pair of shoes to wear with everything!  There are too many cute choices for girls...not that Cullen’s aren't cute too though.

Our big guy is also talking up a storm!  At about ten months he had a vocabulary of nine words. (Momma, Dada, titer for sister, bo,  dog, touch, hello, bye, ball, catch, ugh-oh).   Now he is putting these words together and saying more!  He will look at me and point to the ball and say 'ball' then walk and get it. Or yesterday he was watching Ellie at gym and he said 'mama' pointed at me and then pointed inside the gym...like he was telling me he wanted to go in there. It is so amazing to have the opportunity to watch your child grow like this!!  He can moo when you ask him what a cow says and he tries to bark to mimic Bo.  He can also identify nose, ear and mouth when you ask him where they are. His new 11 month words: eat, juice, click, Hi

I know I have Ellie to thank for this...and I AM thankful...because Cullen loves books as much as his big sister. He will sit for an entire book, point to the pics and retell it in his very own language. So fun to watch.

We spend a lot of time outside because it has been so nice. Cullen goes to the door and says 'ball, ball' until you finally take him out. He loves to swing and play bubbles, but his favorite thing to do is play ball. He can throw, kick and 'catch' any ball he lays hands on. 

He has figured out the cause/effect relationship in a lot of his toys and even during meals. He knows that if he throws an undesirable piece of food from the high chair and yells 'ugh-oh' mommy will throw it away and he is safe from eating it!!  Smarty pants!

I feel so fortunate to have the chance to be a mom all over again. With Ellie we were in and out of the hospital every day because of Bennett. I don't feel like we ever had the chance to just sit and enjoy the little things. After Bennett died we woke up daily in survival mode. It wasn't until Ellie was at least a year and a half that we slowed down and felt so e semblance of normalcy. With Cullen I am blessed to enjoy the small things every single day! 

It has been an emotional week.  Part of me thinks that no matter how many kiddos you have, when the youngest one turns ONE you start to realize that your baby days are over.  I have loved every single baby snuggle, cry, stinky diaper, reflux episode, bath, grunt, playtime, feeding, and all the little things I am leaving out. 

Being a mother is a gift...a true blessing.  And for me it is a dream come true.  This last year has to be one of the best years on record!

10 months                     11 months

 

Blessings,

Angie