Update from Cardio Dr.

We had Parker's echo yesterday and by the grace of God he cooperated. he woke up, but was able to be distracted by playing with the wand of the machine (a $15K toy) and the wires to the sensory pads on his chest. The technician was terrific; she was quick and able to capture all the pictures needed. We were able to confirm that his VSD hole has closed completely (Praise God)! So, the diagnosis has changed to be called a transitional AV canal defect. The Dr. was still unable to definitely commit to his surgery on July 20th. She needs to consult with the surgeon and other Cardio Drs who have patients with Parker's diagnosis that did not have their mitral valve repaired. We are blessed that Parker has a unique form of AV canal defect. In his case, he has no pulmonary damage and his one valve is working perfectly. The Dr. drew Mike and I another picture and walked us through things again which was very helpful. Parker has one "tube" (for lack of a better word and makes a better visual in my mind) where we normally have two "tubes". Inside of these tubes we have three leaflets on the left and two on the right. In Parker's case he has five lealets in one tube. They all work perfectly and close tightly, but we don't know how this defect will affect him long term. The fact that his VSD is closed makes the surgery "easier" while still amazingly delicate. Parker does have two small holes above this area too, but those are not of concern. If his mitral valve did not have the defect they could close the two holes with a cath procedure instead of open heart surgery. The big question is "will surgery improve Parker's quality of life." Or "make any difference?" He is completely asymptomatic and thriving, so you can see how all of us are puzzled. We love our Dr., she is doing all the things one would want...including calling retired cardio drs that have older patients to see their perspective and outcomes.

So, we are still in "limbo." The Dr. thought she would have all the info at the latest next week. She was hoping to talk to the surgeon today. Pray for a definitive answer back from the Drs and that Mike and I will know without question how to proceed. For now, we focus on Parker's birthday and anticipate God's best!

Blessings!

Getting Priorities Straight

Sharing today from Sunday's message at church. God knew what I needed to hear after a long week and the stress of this week ahead. Thank you Jesus for using Pastor Mark to speak to me thru the Holy Spirit, may those of you reading hear the voice of truth speaking!

James 4:13-17 "Come now you who say, "Today or tomorrow, we shall go to such and such a city, and spend a year there and engage in business and make a profit. Yet you do not know what your life will be like tomorrow. You are just a vapor that appears for a little while and then vanishes away. Instead, you ought to say, "If the Lord wills, we shall live and also do this or that." But as it is, you boast in your arrogance; all such boasting is evil. Therefore, to one who knows the right thing to do, and does not do it, to him it is sin."

The premise of the message is for the practical atheist; planning without God. We can be believers and forget God. What is the solution? Include God in your DAILY LIFE.

Proverbs 3:5-6 "Trust in the Lord with all your heart; do not depend on your own understanding. Seek his will in all you do, and he will direct your paths."

Don't put off doing good. Some sins are sins of commission; some are sins of ommission.

What is the solution? Invest your life in things that MATTER.

Stop PRESUMING about tomorrow.

-Life is unpredictable.

Proverbs 27:1 "Do not boast about tomorrow, for you do not know what a day might bring forth."

-Life is BRIEF.

-Make sure you are READY to meet God.

-Plan well for tomorrow, but live well for today.

-Don't give yourself to worry.

Matthew 6:34 "So don't be anxious about tomorrow-God will take care of your tomorrow too.

-Live one day at a time."

Romans 1:17 "The just shall live by faith."

-DO give yourself to happiness!

Proverbs 3:1-2 "My son, do not forget my teaching, but keep my commands in your heart, for they will prolong your life for many years and bring you prosperity."

-Decide to LOVE TODAY.

1 Corinthians 14:1 "Let love be your greatest goal."

Psalm 35:15 "Lord, my days are in your hands."

Mother's Day

A belated post from Mother's Day...one of my favorite gifts are the kid's handmade drawings and stories of why they love their mother..Madeline gets center stage this year..she is 6 years old, look at my eyelashes!!! The paper flowers were a gift from Mallory, Parker had great fun with them although they were torn to shreds in a matter of moments!! We spent the weekend at a swim meet, but isn't that what being a Mom is all about? Spending time with your kids. What could be better? It was a great day, all three kids had ALL personal best swims (which never happens) and Parker was in his element watching the swimming.

We have a busy week ahead. Parker's echo on 5/19 to determine his surgery date definitively. On 5/20 we have Taylor's 5th grade program, on 5/21 the 5th grade luncheon, and of course 5/23, Parker's 1st birthday!!!

It is good to be a MOM!!!

Blessings!

Lara

Hallelujah!

Wikipedia definition: ....in Hebrew means a "joyous praise, to boast in God, or to act madly or foolishly."

Today is a "hallelujah!" day. Parker had an appointment with the ENT to have his hearing rechecked and to check for fluid (tympanagram). And, I am SO THRILLED to report, he passed!! Audiologist had a great report and she was fabulous. Highly skilled and thorough, willing to answer questions without rushing. Can't find those folks these days!!! Excellent report from the Dr., Parker's ears look great and although most children with Down syndrome have "small ear canals" his are not classifed "small." I guess "low set ears" do not mean "small ear canals"...For obvious reasons small ear canals cause lots of issues and the least of which is ear infections. Hearing clearly and properly is a critical piece for speech and language development, so we will be hyper-vigilent (not a word I am sure, but it is late) in being on top of this issue. Dr. went thru his standard "speech" if you will on all the potential risks Parker could have since he has that extra chromosome, but they weren't too frightening and his delivery wasn't offensive. I did feel sad when I had to check the "boxes" on the medical new patient forms, "Down syndrome and congenital heart disease." OUCH, first time those boxes have been there. Guess it gets easier with time, at least I didn't start crying..I will take that as a small step of progress! Hallelujah!!!

He was factual, but not alarming and wouldn't address my "what if" questions. Said we'd deal with them "if" they came up. I already knew if the kids have trouble with ears; course of treatment is tubes, then adnoids, then tonsils.. Interestingly enough he is another supporter of keeping the diet controlled. Weight can be a contributor to not only ear trouble, but sleep apnea. Geez, sleep apnea? add that one to the list....

This report is cause for Hallelujah! Now, I had no reason to suspect Parker had fluid or hearing trouble, but I have been disappointed so often I guess I now prepare for the worst at every new turn. I am full of joyful praise Lord! Thank you for your mercy and grace!

Pictures are pre-Mothers Day facepainting, "if you're happy and you know it.." and a proud big sister!!!

Blessings!

Lara

Boy

definition from The American Heritage Dictionary
n. A male child or a youth. A word used as a mild exclamation.

Definition at our house:
cute, cuddly, fun-loving, captivating, precious, snuggly, little brother, and the list goes on and on...gotta love a "boy" and his dog..or cat :)

Parker with his new toy, his cat, and his two new teeth! Gee Mom, THAT's why I was drooling so much!

Surrender

"Quit quarreling with God! Agree with him and you will have peace at last! His favor will surround you if you will only admit that you were wrong." Job 22:21 (LB)

Surrender has been coming up the last week in my life at every turn...on the radio driving to carpool, Dr. Tony Evans is discussing surrender...daily devotions have been on surrender...the kids Bible homework has been on surrender...gee, Lord, are you talking to me? Sometimes hitting me on the head with a 2x4 might be easier. I hate that I am so stubborn! Read what Rick Warren says about surrender...

"The heart of worship is surrender. Surrender is an unpopular word, disliked almost as much as the word submission. It implies losing, and no one wants to be a loser.

Surrender evokes the unpleasant images of admitting defeat in battle, forfeiting a game, or yielding to a stronger opponent. The word is almost always used in a negative context. Captured criminals surrender to the authorities.

In our competitive world we're taught to never quit trying, never give up, and never give in - so we don't hear much about surrendering. If winning is everything, surrendering is unthinkable.

Yet, the Bible teaches us that rather than trying to win, succeed, overcome, and conquer, we should instead yield, submit, obey, and surrender.

And by surrendering to God, we enter into the heart of worship. This is true worship: bringing pleasure to God as we give ourselves completely to him.

Surrendering is best demonstrated in obedience, cooperating with your Creator. You say "Yes, Lord" to whatever he asks of you.

In fact, "No, Lord" is a contradiction. You can't claim Jesus as your Lord when you refuse to obey him. Peter modeled surrender when, after a night of failed fishing, Jesus told him to try again: "Master, we've worked hard all night and haven't caught anything. But because you say so, I will let down the nets." Surrendered people obey God's word, even when it doesn't make sense." (This one is really tough, speaking from personal experience...)

"God is not a cruel slave driver or a bully who uses brute force to coerce us into submission. He doesn't try to break our will, but woos us to himself, so that we might offer it freely to him. God is a lover and a liberator, and surrendering brings freedom, not bondage. When we completely surrender ourselves to Jesus, we discover that he is not a tyrant but a savior; not a boss, but a brother; not a dictator, but a friend."

This last week has been filled with opportunities to surrender, Mike and I are exploring some non-traditional therapies/protocols for Parker and the weight of these decisions is very heavy. We are re-evaluating his current "schedule" of therapies and trying to assess the effectiveness of his current therapies and/or the providers. Sometimes just because we are "supposed" to do something doesn't mean we should do something. I realized that surrender is the answer, praying in petition, with thanksgiving, surrendering to what doors the Lord opens and CLOSES.

Parker continues to thrive, bringing joy to every moment. We press on, keeping our eye on the eternal prize, reminding ourselves that we are just visitors here on earth.

Blessings!

Lara

Up, Down, Up, Down...

Up, down, up, down, up down....again and again and again...all 4's, yoga downward dog, pushup position..all around...this is what Parker spends his days doing these days..who knew it took so long to crawl! We had our first PT eval this week and the therapist was impressed. She said she couldn't believe he had not had PT. Parker has wonderful sitting posture (which is apparently important - trunk strength) and she explained that what I think is weird (push up/yoga pose) is precurser to walking his hands up to stand(forgive the pics minus pants, bare feet are better, less slipping). So, we are glad that these are all steps to freedom! We are hopeful that they all come at once, LOL. In all seriousness we got homework exercises and they were a welcome addition to our routine. He is working on pulling up and actually does pretty well although he doesn't have the strength to hold himself up alone yet. Funny, how I never considered "working" at these things with the other kids. I have a different kind of appreciation for everything these days!

Parker has a new best friend, Shane. Shane has always laid near him guarding/watching him during play, but Parker is figuring out how to reach him as he works his way down from sitting to all 4's. SO, we take full advantage of teaching him how to "pet" not "pull" kitty's tail and making our animal noises..kitty..meow...

This week I turned 40! Yikes!!! It was a super special day with friends and family! Not all the kids made it in the pics, but thought I share a few. Mike and I are off to Hilton Head this week for a few days. Looking forward to a few days away!