Another {Shriner's} Monday

{Shriners' Mondays} are my "hard" days.

They bring with them more realization of what is in store for Jack's future...

castings, surgeries, more appointments, and etc.

Usually after monday passes I am okay.

The everyday "normals" of being a mom set in and I get thrown back into life's demands.

This week has been different.

It is already Thursday, and Monday is still lurking in my mind.

The words of "abnormal muscle, underdeveloped bones, inability to stand, and finally the dreaded possibility that lil man may not walk"... crept into our conversation between us and the doctors. 

Before monday, we hadn't discussed any other aspect of Jack's development (birth defects)

 except his clubfeet.

It was always... we will start with his feet, and then see what else we might have to do down the road.

Now, I guess we are at the stage where we need to talk about the elephant in the room.

It is hard for me.

And that is okay.

We take one day at a time... at least I force myself to try.

This week I found myself kissing the kiddos a bit more.

Letting the laundry pile a little higher, while I read an extra book... or two.

And rolling around on the ground with lil man and sis.

Lil man thinks bananas are for his hair instead of eating.

Just being silly with daddy.

These last TWO pictures crack me up. 

Lil man lights up when his dad walks into the room.

It is so fun to watch him try to do the things his "daddy" does.

 Oh how I am so grateful for time with them.

Mr. P and baby J both teach me strength and understanding.

Laughter definitely cures all.

So I laughed really hard and long in the car on the way to dinner.

I think it scared Avery a bit until she decided to join in.

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Jack's NUMBER {one}

 

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News is good News even after a HARD night

This little guy didn't do much of this last night:

 In fact, it would be pretty accurate to say he is using his daylight hours to make up for last night. 

Going on his second hour during his nap today.

He needs his rest. And strength to kick those heavy blue wrapped legs around. 

Sleep a few more hours so I can play catchup in my Domestic Duties little man.

Love your baby breath.

Most people are curious to know what goes on during one of Baby J's appointments.

A few behind the scene shoots during a typical clubfoot/Knee appointment:

Some waiting. Actually, Shriners and the doctors are very punctual and we don't have to wait too long.

Play time with Dad. Yes, this makes me nervous, 

but little man and Mr. P seem to get lots of giggles out of it so I can't take that away 

before the torture comes.

Then, they lay him on the bed and begin the flexing and stretching and manipulating. Here he is calm. The older he gets the harder it is on me. He looks over at me with his grunts and cries begging me to pick him up, but I can't. Just have to reassure him its for his good.

The GOOD news: (at least for now)

They seem to be confident he will develop his knee cap.

But he will need more casts and probably a few more surgeries.

Afterwards: Playtime with his favorite sis!!

He ADORES her and so do we.

These kiddos of ours... sure are blessings!!

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{questions}

It's been a while. 

Hate when I start a post with that sentence, but those words are more true than ever.

a while is an understatement for the lapse of time, but life has been steady.

We moved back from Cedar City, utah and haven't really slowed down a bit since the move.

I can't believe Jack is NINE months old and lil Miss is almost THREE.

Tomorrow is a BIG day.

Since the last time I gave a report on Baby J, we have learned a few things:

1. He doesn't have a knee cap in his left leg

2. We don't know how the "knee issue" will affect his function

3. Genetics appointment #2 still undecided-- still leaning towards mild Arthrogryposis 

4. Jack is still my hero and favorite little man 

The last one I have know since they placed the little man in my arms.. 

so that's not really "new" information.

It is sometimes scary to be Jack's mother for me still. 

There are moments when I am uncertain of the "extra" things he needs.  

I have realized in these past months that feeling these emotions are okay. 

I am doing the things I can, and continually seeking help from those who have more knowledge.

But at the end of the day, I have to remember he is "our" little man... 

and I am his biggest advocate.

So tomorrow will be another day, I will sit and listen. Then ask a few questions.

When those questions are dodged... I will ask them again and find new ways 

to get the answers and treatments we need. 

Cause' baby J deserves it. 

He deserves the best there is... and we will fight for that. 

And we feel so blessed to be a part of a hospital community {Shriners} 

who try their hardest to give the care Baby J needs.

Lil Miss looking up to her slightly older cousin- Ollie

We have had some crazy adventures the last few months:

I will add links when I get a chance to blog about them.

1. March 30: Papa's medical benefit =success!! Thanks for your support

2. April 8: EASTER with family and Katschke Klan

3. May: Mother's day and a new Hair-do

4. May: Jack gets the "Boot"

5. May: Roadtrip to WYOMING

6. June: PENDLETON family Reunion in Colorado

7. June: Father's Day

8. Hoogle Zoo trip with Emily/Frank

9. Manti Temple Date night

10. July: Lyn Arrives in Utah 

11. July: Suggs come to visit

12. July 4th Celebrate

13. MOVING DAY

14. July: Roadtrip to California

15. July 24th {Pioneer Day}

16. Unpacking house and Decorating

and of course the Olympics start...

Can't believe the last time we were watching the summer games we weren't MARRIED yet.

Now we have two adorable kids. Yep, I think my kiddos are pretty dang cute. 

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Can it be...

Why does it seem as though the days drag on yet the weeks and months fly by? We have reached so many milestones in the last few months. As a mother I feel guilty... is this the product of a second child. Even with all of the attention and "special" doctor visits for our little man, i still sometimes feel as though both kids are getting lost in the madness.

We are currently living with Mr. P's parents, which isn't the last stop in our nomadic lives. In three months, we will most likely move in with my aunt and help her with Katrice, our 23 year old down-syndrome cousin, while my aunt travels during the summer. I am excited to spend more time with her... it is easy how the "unimportant" things in life melt away when she is present. It will be good for us, especially me.

For now, we are back in the county we consider home and our hearts are well aware. It feels good to be surrounded by love, extended family, and friends. Though we are in limbo-- still, it feels good to be back home.

As we were walking through the familiar hospital hall from seeing Grandpa P last sunday, I had one of those moments you want to capture in a bottle and save it to display on your fire mantel.

{On the way to one of Baby J's doctor appointments}

My sweetheart was swinging baby J in his carrier, and Lil miss was running behind trying to be the first one to the elevator button. Even though daddy was quickest, he sweetly stalled while she reached up to light up the circle. The smile was precious. I am blessed x2 plus one amazing partner.

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Genetic {Counseling}

Counsel-- (noun) advice thats given formally.

Since the readers (all probably 10 of you...) to our blog consists of 98% family members or loved ones, most of you already know that we had to see a perinatologist to check out our lil boy's feet and see if there were other concerns. There was some speculation that his right foot might have a genetic condition called club foot. So off we went to St. George to get things checked out. We decided to make a day of it....  we planned to hit up the Saint George Temple in the morning and arrive at our appointment by 1:30. Who knew that on tuesday morning, the session would be packed (mostly with elderly couples) and when we finally made it to our appointment, they would turn us away for 45 mins due to overbooking. Turns out the nurse was misinformed, but we didn't know nor were we corrected, since we headed to Bajio for some lunch-- turns out that our "little" trip took a lot longer than expected.  It was worth it, though. We were able to met with an amazing doctor (Dr. E), who I think James wished was my actual new OB/GYN. He began the process of thoroughly checking everything out... even though lil man wasn't cooperating-- which is definitely his style. Remember it took us till 34 weeks to find out baby J was a lil man and NOT a lil lady.

GOOD news: Lil J's brain and spine look good and are developing well. BAD news: it looks like possibly both feet are clubbed. GREAT news: club feet are 99.9% treatable using methods such as the Ponseti method. We are just hoping that everything else is developing properly since an ultrasound can only tell so much before the baby is born. After Dr. E shared with us his professional opinions ranging from VBAC, Cesaearn, which hospital lil man should get treatment to the likelihood of "other" complications, he informed us we would be talking with a genetic counselor.

Wait... hold the phone. James was definitely not interested in this last "phase" of the appointment, and as soon as the door shut, he informed me... " I am not going to counseling". I chuckled laughed out loud that genetic counseling explained options while giving informational pamphlets about the process of dealing with a child with "special" circumstances, and it did not mean you had to talk about your feelings. Oh, Mr. Pendleton... you made me smile and still do. Thank you. So we walked out of the office feeling a little more "aware" of what lies ahead of us and a few sheets of paper about club feet. No feelings shared or tears shed... at least not that day:).

So there you have it... a long overdue update.
Hopefully also provided some clarification for those that think genetic counseling means you will be talking about feelings, emotions, etc in a therapy session. Our counselor was nice enough to suggest if James wanted to share his feelings about our (Baby J's) situation, she was more than to happy to oblige. He declined, of course.

** Disclaimer: James is currently in the process of petitioning a name change for genetic counseling so people are not misled by such title.

We are very optimistic about our options and delighted to bring baby J into this world very soon.

Sooo much to finish before his arrival in OCTOBER. Yikes.

PS Happy Birthday shot-out to my sis, Geneve.  Enjoy your day! We love you. 

You need someone to through you a party like the one you gave Litte C for his 1st birthday. Adorable.

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