Even in the midst of illness......

Not wanting to take his medicine, Jack tells me "no either buts" (I think he meant no ifs, ands, or buts!)

Tucker was worried Jack had "ammonia"!

"Your husband.....bought the wrong soy milk!"

This child knows the difference between brands! This is the second brand he will not drink!

And don't you love the "your husband" part, kind of like "your child" when they do something wrong!

Drawing together, "Well, let's just see what ole' Jack boy can do here!"

Sitting down after Christmas program practice, saying, "I feel ridiculous!" (Not sure what he thinks ridiculous means.......?)

Me asking about his program: "What do you do?"
Jack: "We sing songs and we talk."
Me: "Well, what do you say?"
Jack: "Hmm, thank you??"

Time to go visit Santa, Jack is hugging him on the TV when he comes on.

Oh, and he wants me to get him a baby girl out of my tummy, 'cause we have a nice baby boy (Jack), now he needs a baby girl. Good luck with that, son, we'll just have your beloved cousins come visit this weekend!:)

Just Ask Santa

Singing to his animals: "If you want something that would make you pay a lot of money (esspensive), just ask Santa to get it for you!" :)

Me to Jack: "Did you practice your Christmas songs at school today?"

Jack: "Well, can you do Spanish?"

Me: "Sometimes, a little."

Jack: "Okay, good, 'cause we sang 'Halleyuyah'!

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After we got the Christmas decorations out of the garage, Jack wanted to know when we were going to the ones in the "tippy roof", in other words, the attic!!

Tucker reading me his interpretation of a list of "cool facts":

"Goats pee on their heads because it attracts women."

Me: "Well, you must mean female goats, not women."

Tucker: "That is what I meant, women goats."

Cutting Jack's fingernails: "Are you going to cut my nailfoots too?"

Nick interrupted Jack watching his show. Jack loudly protested and Nick came downstairs to the kitchen where I was. Shortly after, here comes Jack.

"I thought you were watching your show, Jack."

Jack: "I know, but I came down here to give Nick WHAT FOR?" And he proceeded to give Nick what for in a very firm manner.

He sure doesn't take anything off his big "brudders"!

While dozing off, laying next to me:

"I just love sweeping with my toys, AND my mom!

Awwww!

While playing with two different versions of Astroboy from McDonald's, using his voice for both:

"I get to go first!"

"No, I do, 'cause I can fly!"

"Well, I can shoot!"

Wonder where he gets this? Two very similar appearing boys competing over who goes first? Naw, couldn't happen at the Ellis house!

More Jack

"My back itches but my arm is too little to scratch it!"

"Ouch! My one foot stepped on my other foot!"

He is keeping me busy recording all his great statements, but I want to be able to remember them!

Me to Jack this morning after being gone so much this week to a conference: "Can we just snuggle ALL DAY?"

Jack: "We can just snuggle EVERY DAY!"

Letter of Remembrance

To My Babies:



There are five of you. Five times I rejoiced in your miraculous creations. Five times I dreamt of being your mommy and watching you grow. Five times I grieved as you faded away. Five times I gave you back to God, praying to be reunited with Him and you again, in time.

I am blessed to be raising your four brothers, they have brought me so much joy. I look into their eyes and wonder about you and what you would have been like. I never got to look into your eyes or hold you, but I know He does and I am comforted that you have never known the trials of this earthly life, only the eternal bliss of Heaven.

I treasure the time you were "mine", but I know you were and always will be His.

Love,

Mommy



October 15th, National Remembrance Day for Pregnancy and Infant Loss. On this day, I try to reach out to others to offer prayer and acknowledgement of their silent sorrow. These babies are missed every day, not just once a year, but a time of reflection and recognition for them is special, a time to cherish our "Glory Babies".

Jackisms

I have not been keeping up my blog lately so I am going to try to do better and I want to make sure I remember to record all the things Jack is saying these days to make me smile. 'Cause this old mom's memory is just........well, I forgot what I was going to say! So here come some more Jackisms:

"Mommy, there is smoke coming out of the world!" (Fog from the hills on this rainy day)

"Just taste my fist!!" (Fussing at "brudders" from carseat, talking tough!)

"Mommy, WHY did you not wake up and wave goodbye to the boys and YOUR HUSBAND?"
(Jeff had let Jack and I sleep while he got the older boys off to school and I usually wave to all of them from the door while they drive off:)

Any questions about who thinks he is in charge around here?

Is it just me?

Or am I going to have to keep my eye on this little fella with the girls?:)

Ready for the Tooth Fairy!

Tucker has been waiting a long time for this hanger-on to let loose. It finally popped out with the constant wiggling right at bedtime last night! Now he has the classic lisp and is waiting for the other snaggle-tooth to let go:)!

Gone Fishin'

LIke Mother, Like Son

Happy 4th of July!

Watching fireworks!
Catching a fish with Dad!"Stayin' alive!"

All smiles

Swinging on a tree!

We had a wonderful evening (Thank you again, Chesla and Steve!) enjoying special friends and watching our children's faces light up!

Hope you all enjoy your holiday too!

Fun at the Lake

We spent some time at the Ellis cabin on Father's Day, everyone had lots of fun being together!

My Dinner Dates

We took Matthew out to dinner tonight to celebrate his birthday (you can tell it was Italian by the sauce on Jack's face and shirt:)!

My Dad is Awesome!

Matthew's letter to the "My Dad is Awesome!" contest was a winner (especially to his very touched dad)!

Happy Father's Day!

I love you, Dad!

Twenty Years!

June 3, 1989

Totally Immersed

Today was a beautiful day! Our church had an outdoor service and Nick and Matt participated in a baptismal remembrance as part of the Confirmation they have been doing this year. Seven generations of Ellises have been baptized in this same water. Seeing my young men commit themselves to their faith in Jesus Christ is something I will hold in my heart always!

He ain't heavy, he's my brother!

Who Loves You?

Jeff and I were taking a walk with Jack holding our hands between us today. I asked him affectionately,

"Who loves you?"

His reply:

"You two guys!" (At our house, majority rules apparently, I am always just one of "the guys":)

"And the brudders!"

"And everyone in town!"

"And JESUS!"

At this point he broke into a stirring rendition of "Jesus Loves Me" for every neighbor and all of God's creatures in the woods to hear!

Inspired

The boys have had a lot of inspiration this weekend. Nick and Matt had their Confirmation Retreat and really had a great experience (Thank you, Bruce and Nate and Church Family!). My dad has been here this weekend and he always has wonderful insight to give all of them. Their dad rented the movie "Hoosiers" for them to watch tonight and they loved it! Tucker was even helping me load the washing machine by "alley ooping" the clothes in after I threw them to him!:)

The younger boys will inspire us tomorrow as we begin Holy Week with waving the palms and singing at our Palm Sunday services.

Wishing you inspiration and joy in your life too!

You know you are a mother of boys.......

When your foyer becomes a basketball court for the Nerf goal hanging on the front door!

Can't resist.....

The Good, The Bad, and The Ugly

The great is that Matthew has tolerated his first week of medicine really well, I noticed a little fatigue, but he never complained. And it helped his blood pressure!

The good is that Nick has cool new glasses and a haircut, and is looking AND seeing awesome. The garage doors work again. The air conditioner has been taken care of and is ready for the really warm temps I am sure (hoping) are around the corner.

The bad is Tucker's cracked right wrist, he is missing his activities, but hopefully this time next week, it will be off.

The ugly is a toss up between Jack's forehead booboo and Mommy's appearance in the morning during this very long week. Jack will heal up great, Mommy, well, we'll see. And I will spare you all pictures!:)

Followup appointment

I know I have not posted in a while, my patients and my family have been keeping me busy! Matthew had his followup appointment with his cardiologist today. Matthew's cath results had been reviewed in Pediatric Cardiology conference and while they did not feel the pressure in his aorta was high enough to warrant the risk of a stent at this point, the pressure in his left ventricle is too high (18, should be 10 or lower) so they want to put him on medicine to reduce the pressure on his heart. Apparently, the blood vessels in the heart muscle of children with his condition are much "stiffer" that normal and put pressure on the walls of the heart. It also raises the blood pressure. The medicine is to relax the heart muscle and diminish the pressure.

He was encouraged to do aerobic exercise to keep the heart muscle strong so his basketball that he loves will be great for him! He can't do any weight lifting or isometrics since that will increase the pressure. The main side effect of the medication is fatigue so if you are around him and notice something, that is probably what you are seeing. I will be home with him his first three days on it to observe him closely this weekend, and I would appreciate any feedback or observations from those of you who are around him to help me monitor him. He won't complain about anything, so we will just have to go by our instincts.

He is as usual very positive, just smiles and agrees to do whatever the doc says. Thank you all so much for lifting him up!

Amazing figures!

Tucker got two medals today, one 1st and one 2nd!

I see patients two days a week and had almost two hundred office visits this month!

Nick fasted for thirty hours, from noon yesterday to six tonight, as part of his youth group's project to raise money and awareness of world hunger!

Our blessings, too numerous to count!

When You're Smiling....

The whole world smiles with you!

Awe

All I can say tonight, as I sit in the dark of this hospital room, is that I am in awe. I am in awe of our Mighty God. I am in awe of the power of prayer. I am in awe of the faith and strength of my child. I am in awe of the devotion of our family and friends. I am in awe of the prayers and support of so many who don't even know us. I am in awe of the words, written and spoken, that found their way to me, to calm me in this storm, just what I needed, when I needed them. I am in awe of the power of a father's love for his son. I am in awe of what God must have in store for Matthew in giving him such healing grace.

I am in awe that I let go, and He gave him back to me.

White Knuckles

I am home from work after a very busy day, Matthew is getting his shower, the others are spending the night with Aunt Debbie, and I am "white knuckling" it. You know, when you are holding on to something so tight that your knuckles turn white? I am holding on to my emotions and my composure. I am holding on to my life and my family as I live today. I am holding on to my dreams for my child (and myself). I am holding on the prayers and expressions of love that we have been overwhelmed with through this journey. I am holding on to the faith of a child, my child.

One of the most difficult moments I have faced in my life was sending my dying infant into surgery, not knowing. . .

He did not die, he thrived.

So I am holding on with white knuckles tonight, praying for the strength and grace to let go tomorrow, let go of my child once again so that he can be healed, to let go and give it all to Him.

I Have to Share This

My son blew me away again today. He was telling me after school that he spoke to his class about his condition and upcoming procedure. He described what would be happening, asked them to say a prayer for him and assured them that he would be fine. Then he goes on to tell me that he tried hard to reassure them that this was not a big deal because he was worried that some of them that had "aggravated" him in the past might think that they had caused his blood pressure to go up and his condition to worsen and he did not want them thinking that or feeling bad. He talked about how kind everyone had been to him through all of this, how much he appreciated it.

How does a 12 year old boy step outside himself to look at things this way, worried about others, not himself? Because He is holding his hand, and Matthew has peace in his heart and there truly are angels among us!

Happy Valentine's Day!

More Matthew Lessons

God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference. Living one day at a time; Enjoying one moment at a time; Accepting hardships as the pathway to peace; Taking, as He did, this sinful world as it is, not as I would have it; Trusting that He will make all things right if I surrender to His Will; That I may be reasonably happy in this life and supremely happy with Him Forever in the next. Amen. --Reinhold Niebuhr >

Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will direct your paths. Proverbs 3, 5-6

We are counting down to Matthew's procedure date with mixed feelings. Ready to move forward, fearful over the potential risks, excited over the potential improvements for him. And reminded by a faithful little boy that he is not concerned because there is really nothing any of us can do, he will be made comfortable by the anesthesia, the doctors will take care of him the best they can, and He is watching over him. So it is out of his hands, and he knows that His hands hold him.

Now, he is really more concerned about his basketball tournaments this week, because he feels that these results are up to him and he wants to work hard and do well.

The Serenity Prayer is so perfectly simple and correct, but not always easy to learn to live by no matter what age you are. But when your twelve year old son seems to understand it and stick to it, it really puts it in perspective.

I am very proud of his brothers and the efforts they have made, even when I know they went against their natural inclinations, to make life pretty normal these days while taking care of their brother in subtle ways. Avoiding agitating him, carrying things (Matt is not to lift or strain any weight right now), keeping his needs in mind but keeping it real.

We appreciate your prayers, we know we are never alone, we have Him, and those who love us through Him, who could ask for more?

Tucker and Beaker

Just look at this face!

Just can't help but smile!

How old do you have to be to get away with this?

WHOOOSH!

Our rollercoaster ride continues! The boys had bball games last night, Jeff and I and all the boys were there (it can be really hard to make that happen with all our schedules). Matthew has had one dream and that was for his first score to be seen by all of us. He has done really well for a first time player with defense and rebounds but had never scored. Tues. night he was so mad at himself for "walking" and missing a layup.

He grabbed a pass, put it up, and WHOOOSH! And the crowd went wild!!! He was so modest but absolutely thrilled. You would think he broke an Olympic record or made the game winning score (we lost the game, by the way, but we didn't care:)! But for him, it was a hard-earned dream come true, and all of us who know his spirit were so incredibly happy for him! And just one more time that Matthew has inspired us that all things are possible! I remember the infant legs that didn't look or kick normal because they were so weak from lack of circulation. And now I watch them run down the court and am reminded that He is always there, even in a small town middle school basketball game, revealing Himself in a little boy's eyes and in the many tears shed for His grace upon us.

Where we are now

I have lots of praises and requests today! We had our appointment today, it all went smoothly and I wanted to let you know where things stand. Jeff went with us and we had a very informative consultation with the doctor. He was very kind and appeared to have really studied Matt's case and he showed us the MRI images so we could see what was going on. We asked a lot of questions and he patiently answered them. Jeff and I both thought about how hard it would be to be a pediatric specialist dealing with life-threatening conditions in children, with very worried parents. Poor guy, can you imagine putting up with two anxious parents throwing questions at you right and left, who are both doctors:)!

Matthew has an area in his aorta that is too narrow, it is a little longer that we realized until the MRI and may be "kinked" more than is evident on a 2D image. Then the aorta kind of balloons out from the increased pressure (but there is not an aneurysm). The goal is to get the aorta to be the same diameter throughout this area so there is not any pressure gradient. He will have to have a cardiac cath under general anesthesia and with intubation and they will take size and pressure measurements with the catheter and then come out and talk to us about options. The pressure may be lower than it appears and nothing will need to be done (based on results so far, this is not likely). They may be able to dilate the area with a balloon (this is also less likely of a scenario because they probably cannot stretch it big enough without taking risks of rupture, which could prove fatal). They may be able to put a stent in to stretch and hold it open. Likely a stent that would fit at his size today will not sustain him through his full growth, but may have to be revised in a few years. And the other option is that because of coiling of the vessel and/or size of stent needed, that there is too much risk of aortic rupture to go through the catheter site and he would need open heart surgery. They will tell us that at the time of the cath, wake him up, and schedule that at a later time.

The plan is to do this Friday, February 20. It is only a few weeks away but this will allow him to finish his basketball season. It is getting him in better shape and he has lost 5 lbs (a good thing) in the last month and they are encouraged by that. He has worked really hard and it has made him feel more like a "normal kid" so that he has handled this challenge very well psychologically. His coaches watch him like a hawk and never push him, but give him the encouragement and opportunity to participate and it has been so good for him, I will be eternally grateful. This development has been caught early and the doctor said even a couple of months would be fine and he is not even sure he could get him on the schedule much sooner than that. We certainly would move forward as quickly as was felt needed, but this is something that is more to protect him long-term than of an urgent nature (like his initial surgery!)

My sweet boy was a model patient, wanted to go to school as soon as we got back in town, and does not even want to dwell on all this, just wants to do his thing day by day. I am home for a couple of hours before going back to get everyone and we have games tonight. I wanted to update asap.

I am sending praises up for having such a tremendous husband and father for my boys, he takes wonderful care of us in every way, for caring medical providers with the skills to take care of us,
for the progression of medical science to where a little boy like Matt can survive and thrive, for all the support and concerns and prayers that have been offered up for us. And I praise Him, for through Him, all these things are possible.

Love, Laura

Bring It On!

Prayer, that is! Jeff and I will take Matthew to see the interventional cardiologist tomorrow to discuss the procedures that he needs. We have been going along with all our daily activities, living in the moment, but our concerns are always there in our minds. We have been trying very hard not to show any anxiety around the boys so as not to worry them. They are older now and read us so well. I have been hesitant to schedule things or make any commitments for the near future, not knowing what may be facing us. I know tomorrow I will need to ask the right questions and make the best decisions I can for my child. I also know that I will have to keep up a very positive composure as I listen to the doctor tell us all the things that can go wrong, and give informed consent. I already know what he is obligated to tell us, I just don't want to hear those things said out loud. I know those things are rare, but when your child has a defect that occurs in only 1 in 50,000 births, rare becomes a relative term.

Your prayers and support have done so much already. Whenever the terror and the tears have threatened to take over, I have felt the strength and grace I have needed to be lifted up above them and move forward. Please keep it up, we need it more than ever, like my boys would say, BRING IT ON!

Let It Snow!

Yes, you are reading the blog you thought you were reading.

(The little girls are my nieces!)

Yes, you do see SIX children playing in the snow.

(Which means, yes, I really did bundle up six kids into all that STUFF!)

Yes, she is beautiful!

(And yes, I may be a little biased but doesn't she just make the prettiest little snow princess you ever saw, especially in the Pokemon boots she had to borrow:)!

Yes, my oldest is taking the baby girl for a long walk!

(She is his little sweetheart, and he is mine, just don't tell his friends!)

Yes, isn't Jack's hat just too cute?

And finally, yes, there are not many pictures of Matt and Tucker because they needed to hit the slopes!

(No time to pose for Mom right then!)

Precious children, precious moments, precious memories!

(Now mom needs some precious Ibuprofen and some precious sleep!:)