Just another day

just another day of crawling boot camp at our house...in between therapy, running siblings back and forth to camp, swim practice and baseball we cross crawl 40, yes, 40 times a day! We all have tougher knees than we used to..don't be surprised if you come visit and we are all down on all fours like animals! This week we talked to the nutritionist and guess what? Our mostly healthy eating still needs some major modifications. I am now more familiar with goat's milk, seeds (hemp, flax, pumpkin, you name it..) than I ever thought possible. I am now on the search for a vitamix and a champion juicer. Children with DS are prone to celiac disease, thyroid issues, and a host of other vitamin deficiencies, so we are committed to food that makes Parker "fit for life." It does make a difference, dairy despite doing a number in the intestinal track can thicken mucus secretions which in turn causes ear issues and/or worse..articulation issues for speech. I never was a big fan of cow's milk anyways. Good thing my other kids aren't big milk drinkers, LOL. The goat's milk is an acquired taste. I need more hours in the day to spend time researching all this stuff, forgive me if your call or email goes unanswered, keeping up is becoming a difficult task these days! We have started the countdown for surgery, so Parker is sequestered (as best we can) and quarantine has begun. The thought of postponing any longer(as much as I want to forget the whole thing) brings me to the brink of a nervous breakdown... On a high note, Taylor's All Star team won their first game, 12-0. Go Red Raiders!

Pull UP!

I am in the middle of cleaning clothes out of kid's closets (we all know this is my weakness) to start my ebay listings (do I really have time for this?) and Parker was helping me playing with his toys. We practice pulling up and playing with toys while kneeling. Parker has always been good with bearing weight on his legs and actually enjoys standing. His issue is his abs/obliques (isn't it for all of us?), not enough core stabilization I suppose. I just happened to have my camera handy and he pulled up on my storage box! he actually grabbed the toy and stood for a minute. He clapped his hands and toppled over, LOL. So funny to watch him try to untangle the legs! He is actually standing on his own in the pic holding the keys!

Yesterday

was an anniversary of sorts..one year ago, on June 10th(one day after our oldest son's birthday) we got the news that Parker did indeed have DS. Yesterday didn't comsume me, it was busy (what else is new?) and while I thought about the year throughout the day I felt a sense of peace. Very different than I felt last year. Not a single tear was shed. A major improvement. I still have fears. Lately my fear is that this last year was the easiest (how can that be possible?) and that now things get more difficult. I find myself studying people as we are out in public. I wonder, "do they know?" when they comment on Parker and how precious he is..will they start to treat us "differently" when he gets older and his DS is more obvious? What I keep coming back to is that God is faithful and God has a plan. I am learning that people will watch our reactions and based on our responses they will act accordingly. I know there will be up days and down days, but please remind me of that when I fall short and wallow in self-pity. Or as I say to a friend, please "kick my butt" when the pity party starts. Mike and I will continue to praise God for the gift of Parker's life, celebrate his life, and enjoy the journey, looking for the things that God is revealing to us in Parker's life!

Blessings!

Lara

Success!

FINALLY some progress!! This is video from Saturday, I waited to publish in case it was a "fluke", but now Parker will creep/crawl across the floor. Still working on all 4's crawling, but thankful for this milestone! Forgive the cheesy voice...love the faces and grunts he makes working HARD! I credit this accomplishment to NACD crawl boot camp, a fantastic new OT, a dedicated Grandma that works Parker out when I can't stand to do it "one more time" and most importantly LOTS of prayer!

ETA: for some reason blogger doesn't like my video..let's try this again with a shorter clip. Forgive the messy house and the ironing :)

Baseball Boys, Rock Star Girl & Surgery Update

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!

Psalm 28:7

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.

Birthday Boy

May 23, 2010 our precious boy turned 1.

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!

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!