A year ago today..

This small boy...

after spending 50 days in this same hospital room...

His first 50 days, and the first quarter of his life..

Got dressed in these fancy duds...

Cuddled with this nervous mama.....

Was placed in this (picked just for him) car seat...

And taken home...

Where he was welcomed with open arms.....

by this VERY experienced big brother...

and this less experienced big brother...

and this novice big sister.......

Creating this happy picture of four lovely children all together in our home.

A picture that lasted for all too short a period of time.

We ALL miss you, Seth. Thank you for blessing our lives.

Thank you, Jesus, for the grace, courage, and strength we witnessed in and through the circumstances surrounding our small miracle boy. We are grateful for the time we had with him and anxious to see him again in Heaven. In Your time.

My First Ever Blogging Contest!

Saturday - 9:00pm: Comments now closed. Winner announcement coming soon.

Edited to include additional guidelines. See below.

Alright, readers (all four faithful followers, hee hee), I'm going to lighten things up a bit today and host my FIRST EVER BLOGGY CONTEST. Are you so excited? I AM! If you were paying attention on this post, and I'm guessing most of you were NOT as I did not get a SINGLE comment on the section to which I refer. Ahem. But I digress.


Our family is growing. Sssshhhh, don't tell the kids. It's still a surprise. We're getting a puppy! This adorable little sweetheart right here:

Isn't she cute? Her name is currently "Bailey" and while it's a perfectly adequate name, I suspect we'd have a lot of confusion around here. Cary & Kayleigh already sound a lot alike. Can you imagine if we add "Bailey" to the mix? Truthfully, I'm more worried about hollering at Kayleigh ("NO, Kayleigh!") and getting poor Bailey all disoriented. So we need to

NAME THIS PUPPY!

I'm not quite sure what the winner will get but I promise it'll be worthwhile. (I'm thinking a $10 gift card to Starbucks or Amazon). Plus, you get the honor of having named our puppy! All you need to do is leave a comment with your suggestion. I don't care if you have a bunch of suggestions but I'd REALLY appreciate it if you put them all as one comment, okay? So pretty much my only rule is one comment per person but feel free to make as many suggestions as you want within that one comment.

"Bailey" (soon to be someone else) is 100% Australian Shepherd. She's 4 weeks old and will likely be coming home soon. We're excited but she needs a name. And just so you know, I'm running the contest so I don't have to listen to my kids argue over what we name the dog! I'm going to just pick the winner and there we go!

I'll probably close the contest Saturday night. Thank you!

And just in case you'd like some additional guidance (you know, to increase your chances of being picked and all).. Our previous pets have either had "cute" names or names with meaning or some combination of the two.. I had hamsters, "Peanuts" & "Popcorn", a cat "Kisses" (cause she gave them out), dogs "Archie" which was short for Archimedes.. who in addition to being a famous old Greek guy, was the name of the owl on Sword in the Stone, & "Jitters".. We also had a Ginger and a Sophie, both already named when we recieved them and we kept those names. For this little one, I would like something somewhat feminine sounding, and with meaning!

If you've already entered, I am totally okay with your deleting your comment and substituting a new one with additional suggestions. When I close comments, I (and my husband who just found out about the contest, oops) will just go through the comments and see what we like!!

Have fun! Happy puppy naming!

Thankful Thursday - May 14, 2009

Another Thankful Thursday. I'm probably going to sound repetitive but I'm churning this out quick today as we've got lots to do. Here goes:

1. I am thankful for my husband. I really am. Sure, we have our differences but this morning he let me go back to bed (I"m coming down with something I think). When he left this afternoon for work, he hollered back into the house "Thank you, Kathryn" and I said "for what?" and he said "for everything!". How sweet is that?

2. I am thankful for Sean, Cary, and Kayleigh for bringing bits of joy into my life everyday! (As mentioned in yesterday's post, and other places)

3. I am thankful for enough food to eat, clothes to wear and a house to sleep, work, play and live in!

4. I am thankful that we live in such a great country. I may not always agree with you (generic you) or our political leaders but I have the freedom to disagree! And to work where and how I can and to worship as I desire. God Bless America!

5. I am thankful for our Heavenly Father who makes all of the above things possible! "Every good thing comes from above".

Walk with Me Wednesday - Snapshots..

Edited to add a "Cary snapshot" towards the bottom.




Oh, another Walk down Memory Lane with Lynnette! Yay! As usual, I"m late getting to it.. Better late than never, right?

Today, I've been thinking about snapshots. Not necessarily photo snapshots, but memory snapshots. Those "moments" literally, minutes in a day, that we think we'll capture in our memories for always. Of course, on our own, our feeble minds can't remember.. Heck, I'm lucky I can remember what I ate for breakfast! So, today I'm just going to share some random "snapshot moments."

All, yes all four, of our children have/or are currently, receiving speech therapy. Sean's been at the longest, starting when he was 2 and still getting some at school. Cary got a few years between age 1 and when he "graduated" late last year. Kayleigh got about six months of speech before Seth was born and has recently started up again at the school. Seth saw speech language pathologist (SLP) for oral issues, mostly feeding due to the g-tube.

I was recently reminded of a speech therapy session when Sean was about Kayleigh's age. He was working on the /k/ (hard k as in kitten or cake or carrot) sound. The SLP put a card in front of Sean and he said the word. They were flying through the list.. "Carrot" "cat" etc. A picture similar to this appeared on a card:

And Sean very earnestly stammered out:
"cu.. cu.. cu-MUFFIN" Years later, I'm still laughing about it!

I almost re-lived that moment today! Kayleigh has this tendency to drop her first vowels. She's currently working on s blends, st, sn, sk, etc. at the beginning of a word. The SLP reminds her to "let the air out of your tire" as Kayleigh says "sssssssssssss" at the beginning of a word. "Ssssssssnow" "Sssssssssssssski" etc. So today they're using cards. And Kayleigh's truckin' along and the image below appears on the card:



And Kayleigh stammers out:
"Sssssssssssssssssss Pee Yew!" (It sounded like "spew").

Cary "graduated" from speech therapy last fall. Our wonderful SLP saw him about once a month through November due to the "instability" in our home at the time. I was grateful. I couldn't think of a specific speech therapy to share but Cary offered up a similar example for me this evening! We were going to his 1st grade "musical" performance. I was asking him where he was standing on stage so I could sit in the right area etc. Cary says, "Oh, mom, I'm not going to be singing Twinkle, Twinkle, Little Star." Uh, okay? "I"m going to be paying the glockensmock."

The WHAT? Oh, GlockenSPIEL. Of course! And you do "smock" (smack) it..

Sometimes I forget that our kids don't always perceive the world the way we do. I'm glad. What joy those "mis-perceptions" bring to my life!!

In Other Words Tuesday - Answered Prayers?

Well, today is Tuesday and that means time for "In Other Words: Tuesday". Today Loni is hosting over at Writing Canvas. Head on over and check out the amazing, inspiring story she shared today, as well as what others have to say about today's quote. Keep reading for MY take on it!


Can I say how much I LOVED today's quote? Well, LOVED might be a bit strong. Actually, now that I'm REALLY thinking about it, I may not even like this quote from Gary House's book, Seeking the Face of God: The path to a more Intimate Relationship with Him. But here's the story.

As you well know, I HAVE learned that faith isn't tested by how often God answers prayers with a Yes. What kind of faith would it be if it were? If God were a "genie", what sort of faith would we be required to have? (Short answer: None). Believe me, I would like nothing better than to have all four of my children here, together, healthy and happy. I would. And I prayed for that. And because I don't get to just rub the magic lamp (and we live in a sinful, fallen world due to our free will), that's not what my life looks like right now. And I'll be honest, deep down, I'm rarely okay with that. I MISS Seth. Every minute of every day. I WANT him here with me, that's how it's SUPPOSED to be. (In my book anyway, right?). And it's not like that.

And, yet, I have faith. I have a Lord who loves me. I am BLESSED to be able to serve Him. Sometimes, right now especially, serving the Lord hurts. I've been taking Kleenex to the hospital (as previously mentioned). And as much as I "like" to go up there and see the nurses and some of the people who loved us through our journey with Seth, it is, EVERY SINGLE TIME, harder than I think it's going to be. I have been able to share parts of Seth's story. I have done those things because God has given me the opportunity and asked me to be obedient in serving Him. But bigger than that, I recieve grace from God to do those things.

Angie, Audrey's mom, shares on her blog, Bring the Rain, that when they told her Audrey would die, her response was "I think my Jesus is the same as He was before I walked into this room". My Jesus is the same yesterday, today, tomorrow. He was before Seth was born and He continues to be after Seth's death. And I AM grateful. For where would we be without Him? Thank God, I can cling to Him with all my might and never have to find out!

Praying for Tatyana

Look at this ADORABLE face!

Thank you for the prayers already prayed after my brief shout out earlier.

Tatyana went home from the hospital yesterday (Monday) evening. Her mom can manage meds at home and it's easier for a family, with an older and younger sister to take care of, as well as patient, to be together under one roof.

Chantelle posted an update on Tatyana's care page and gave me permission to re-post it here:

As some of you may know Tatyana was admitted to the hospital Saturday
because she was diagnosed with Pneumonia. After hours of test they were also
able to come to a conclusion on what is causing her swelling that has
progressively gotten worse since March. The good part for now is she came home
today and she had what is actually called Human Parainfluenza Virus type 3 which is often associated with bronchiolitis and pneumonia.( and yes it was sent to be
tested for Swine Flu results were neg.) The hard part is she has something
called Protien Losing Enteropathy or known as PLE.

What is Protein-Losing Enteropathy?
As the number of survivors after the Fontan operation have increased, an unusual and inexplicable ailment called "protein-losing enteropathy" or PLE, has been noted to occur in some children within a few weeks after the Fontan operation, or years later, in children who are otherwise doing well from a cardiovascular standpoint. Symptoms of this ailment may include swelling of the abdomen, shin and ankle area, and a change in bowel habits with the development of diarrhea and abdominal discomfort
Children with PLE lose protein molecules from the blood serum into the intestinal tract. Over time, the concentration of serum protein in the blood stream can be significantly depleted. One consequence of a low concentration of serum protein is the inability to maintain fluid within the vascular space. Low serum protein
levels can result in the accumulation of fluid outside of the normal vascular
spaces and in the abdomen, ankles and shins. An abdominal fluid collection is
called "ascites", and fluid in other tissues is generally referred to as
"edema."
The loss of protein into the stool results in a change in bowel
habits with the development of diarrhea and abdominal discomfort. Edema of the
intestinal walls may result in poor absorption of food which promotes further
worsening of the diarrhea. Another consequence of intestinal protein loss is the
depletion of serum immunoglobulins which fight off infection. Patients with
severe PLE are therefore at risk for serious infections at a time when the body
is already weakened by other symptoms related to edema and ascitesPLE after
Fontan operation is a puzzling disease.

At the moment, treatment options are limited, but include:
1) general symptomatic relief by using diuretics and changes in diet
2) treatment at the intestinal level with steroids or heparin infusion
3) treatment at the cardiac level by improving hemodynamics either with medicine (captopril, enalapril), or with a fenestration or a heart transplant.
Still unknown is the precise mechanism of this disease and why it
afflicts some children and not others. Further research into the cause of PLE is
needed. Once the cause is better understood, more effective treatment options
may then be used for this troublesome illness.

~ I know this is a lot of reading but it seemed like the best way to explain it. ( was to copy and paste?)
I just hope and pray that she will make it through this. She is a strong little
girl. I just want her to be happy and play and not feel sick.

I believe they are currently managing Tatyana with medications. PLEASE be praying for this family! I know Chantelle is worried, who wouldn't be? Please pray for God to give her peace in the midst of this trouble time. Thank you, friends!

Firsts..

In 45 minutes (or by the time I finish writing this post!), it'll be Tuesday, May 12th. Seth has been in Heaven for seven months, which means that I have walked on this earth more days since saying goodbye than I walked with him breathing beside me. I think I can honestly say I don't hurt as INTENSELY as often but I know I don't miss him any less than I did on October 12th.

It's been a year of fascinating first, this past year (and I actually mean about the past 13 months). We've had the usual firsts, experiencing with our fourth child the same types of things we experienced with our first, second, and third.

First breath (at birth)

First visitors

First introduction to siblings (well, Sean didn't get that one!)

First bottle

First day at home

First smile

First giggle

First time he reached for a rattle

First car ride

First time attending church

First time to visit someone at their home

First Mother's Day, Father's Day, Fourth of July

With Seth, we experienced a whole new world of firsts!

First open heart surgery and all that entailed (first IV, PIC line, etc)

First extubation (we naively only expected one, not a FIRST, goes to show how little we knew!)

First g-tube

First heart catheterization

First weight, pulse ox checks at home

First home nurse visit

And the firsts which Seth has already missed -

First Halloween

First Christmas

First time sitting up alone

First crawling

First Birthday

First time standing

If Seth were here now, we'd be celebrating and anticipating:

First solid foods

First steps

First words

But instead we are dealing with a whole new experience of firsts:

First time his insurance card didn't come in the mail

First Mother's Day without him

First anniversary of his homecoming from the hospital - without him

First Father's Day, Fourth of July, etc without him

We had the first time his brothers cried for him.... the first day he wasn't with us... the first funeral our 3 "big kids" attended.. first cemetery visit.

But we've had AMAZING firsts.. Not quite as easy to list and pinpoint.. little things that let us know we'd be okay, in spite of our loss and because of our God.

First time I didn't cry in church.

First Kleenex delivery to the hospital

First time I sang "Blessed be Your Name" without weeping

First time Kayleigh said Seth was "at Jesus"

First friends I wouldn't have if not for our experiences

And almost bigger than that, and most recent, the first time I shared my experience and a little bit of how Seth touched my life for the glory of God. I am SO grateful. I am grateful to know how much God loves us, to know that God's glory can and WILL (and does?) shine in our suffering and difficulties.

Thank you Lord for the opportunities to grow in your love, to know your goodness and to share how I see You working.