This weekend was our annual Memorial Day Madness tournament (and a swim meet). 4 days in 100+ degree weather, YIKES! And summer isn't even here yet! A bonus picture of Mallory from the Taylor Swift concert too...
We heard back from the Dr. and after extensive research and discussion with our surgeon the recommendation is to go forward with open heart surgery on July 20th. The bottom line ..the issues are more related to the ASD than they are to the common valve. Rhythm and lung issues can become rate-limiting factors for his lifespan if we leave even a very minor degree of dilation of his right heart (specifically related to the ASD). Since it needs to be fixed, there's no point in waiting until he's older. It's much easier on him now in terms of apprehension, fear and recovery. Mike and I are at peace with the decision, so we will proceed and know God has a perfect plan. Please don’t misunderstand that we aren’t afraid (we are), but there is comfort in having a definitive decision if that makes sense. Time to close this chapter of our life.
We will talk to the kids when things quiet down, so please remember they don’t know. We love seeing all of you at church, school, baseball, swimming and everywhere and know that you all care and love us very much and want to know more, but please temper that with the fact that our kids aren’t aware at this point.
At this point we know July 19th we go to TCH for a morning full of tests, then go home to sleep (yeah!) and arrive at 6am for surgery. Hospital stay is approximately 7 days. ICU 2-3 days. Now, to keep Parker healthy becomes out top priority. We know Dr. Fraser is militant about his patient’s health and will not proceed with the hint of illness. So, please stock up on hand sanitizer and by early June we will “hunker down” to keep germs at bay (best we can).
Please pray for Mike and I as we prepare for this “event” and that our faith is renewed daily. Pray that the kids will be unaffected and not afraid. They will know that God is with us at ALL times as we always pray. Pray that our faith as a family will grow and that we can be witnesses to others as we travel this path and God will be glorified!
The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.
Family and friends, and a year's worth of blessings to celebrate!
God has been so good to our family and we truly are so thankful.
Lots to say, but today...just a post of pics, so enjoy!
The pool gate is back up, Parker is like the other kids...a magnet for water, swim lessons can't start soon enough!!! And I have the same pictures of Taylor crying in his cake too..too bad that dislike for cake didn't stay with him!
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 CardioDrs 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 cardiodrs 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!
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."
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!!!
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!!!
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.Jeremiah 29:11 Our unexpected journey with Down syndrome, babies with heart conditions, T21, and AVSD.
Lara, 40 year old wife to Michael (married 17 years, best years of my life)! Mom to 4 wonderful kids! Taylor, 11, Mallory, 8, Madeline, 6, and Parker born 5/23/09. We found out after delivery Parker has Down syndrome and a complete AVSD. He was scheduled to have open heart surgery at 4-6months, but God intervened! His surgery was postponed until July 2010 and God healed his VSD hole in the process. So, on July 20, 2010, Parker had open heart surgery to repair his transitional AV canal defect. He was in ICU for less than 24hours and home in 72 hours. We never looked back! I own an Executive Search Firm focused on Accounting/Financial placement (used to work in Big 4). Actively involved in my kids activites and school; all are competitive swimmers and son Taylor plays tournament baseball. Girls do tumbling as well. Avid runner and boot camp fanatic. Used to be a competitive figure skater growing up. LOVE to shop, ebay/etsy crazed, addicted to Starbucks non-fat lattes, a child of the KING, thankful that we are saved by faith and grace!