6 weeks ago

6 weeks ago today..I had a lot of fears...surprisingly (or not) I have even more today...I worry about the future for Parker, I worry about him walking or reaching other milestones, I worry about the therapies, I worry that I am not educated enough about the things to do or not do for a child with Down syndrome. I worry that the heart surgery was the "easy" part. I worry about his education, don't even get me started on his "adult" life..you guessed it I worry here too. BUT, we've had a mighty victory, Parker by God's grace, has a healed heart. I will not allow the enemy to steal that victory! I chose to celebrate God's mighty miracle!

Today we celebrate the victories, Parker is having some amazing growth and development the last few weeks...his latest..he can now climb three stairs unassisted (found that out the hard way..good thing I was close by). His new favorite trick is standing in his crib chewing the rail..nice to have that rite of passage! He is giving me his "who me?" look in this picture. Couldn't resist this picture with Mallory too, they melt my heart and he clearly adores her!


Jesus says the things that scare us the most are the things we should pray about. Pray mightily I am!

"Because Jesus "understands every weakness of ours" (Hebrews 4:15 CEV) the Bible says we can have "confidence, then, and approach God's throne, where there is grace. There we will receive mercy and find grace to help us just when we need it" (Hebrews 4:16 TEV).

Cease Striving!

So, I have lots to say, but not enough time to say it all..an update is needed though, it has been too long...I had a tough week last week, a number of things were setting me off and my kids started school so adjusting to that routine is big enough! I had some moments where friends said things to me that caught me off guard about Parker and Satan got the best of me. These friends didn't mean to hurt my feelings, so please if you are reading this don't apologize! Just hit me that some people now view us as "that family" with the "special needs" child. One of my new friends so lovingly and wisely pulled my head up and said, "Lara, stop living for yourself and measuring your self by the worlds standards, remember we are here to live for Christ." She was so right...the plans I have for myself, my kids are just that..MY plans. I am guilty of forgetting that I am to be a "stranger here on earth" and my journey is to find what plans Christ has for me. OUCH, hate that lesson. I am the first to admit I am selfish, my family knows it and so does my husband. He loves me despite all my shortcomings and for that I am SO grateful!!! Finally my precious Children's Minister posted this verse. "Cease striving and know that I am God." Psalm 46:10. This week has been MUCH better!


Busy week! 5 weeks post surgery! Yesterday we had an ENT appointment, all good news again! Parker has amazing ears, praise God! I talked to the audiologist and decided to decrease the frequency of his visits since we have had all great results (he has been going monthly)..we will follow up in December with the Dr as well as the audiologist. If there are issues we will call and go in immediately. One less Dr visit means a LOT around here!

Monday we went back to PT, the gym is empty at that time and while he wasn't technically "fully" released we needed an "outing." I realize how pathetic that sounds, therapy an outing? Yikes! She was amazed at how he'd changed in 4 weeks. We are working mostly on climbing up stairs and turning around to slide down backwards into the ball pit. We start back OT next week. I'm excited to see her again, Parker is doing great with his self-feeding. Check out our video! Pictures are of his latest, pulling up to stand on everything, but he loves the shower door the most! He is trying to climb the stairs at home, so needless to say he requires constant "eyes" all the time these days.

Today we had our follow up with the cardiologist. Another fantastic report! He is 20 lbs, vitals, pulse ox, xrays all excellent. He is off Lasix now and in one more week we will have all restrictions removed. We will be able to lift him under arms again (YEAH) and she even said "go live your life." So, while we will be tempted to venture out we will probably sit tight for a few more weeks. He has no leakage in the valve and the heart is a normal size. No swelling, no fluid. We talked more about the "bump" and I feel more at peace with it. Still isn't my favorite thing to touch or feel thru shirt, but she assumed me it is a cosmetic issue. Can't do any harm to it. Parker was his usually charming self, everyone is always taken with him and he knows it. He "works it" and flirts with the ladies. Quite the ladies man! We will see her again in 6 months and from there annually! She asked if I ever believed we'd be here a year ago and how did I feel? Thankful, joyful, relieved, in disbelief? Hard question to answer!!!

On another note, I will get on my soapbox about putting sunscreen on your kids. Taylor had a mole removed last Friday and while it was non-cancerous, it did have abnormal cells. So, he will have surgery (in office, lidocain, so he won't be put under) to remove all borders and be sure it is completely "clean." It was on his neck which is not my favorite place for a scar, but we are getting pretty good at scar management in this house!! Add an annual visit to our list of things to do for him to be "sunsafe."

Lots more to say, but not enough time. Praising God for his goodness!

XO

Dishwasher!

There is a new model in town...a rite of passage for all kids..Parker has now learned the art of "dishwashing." I remember how Taylor loved the dishwasher..one day I turned around and there he was sitting inside grabbing dirty utensils and licking them to his heart's content! I didn't allow Parker to go that far..he did crawl in and remove a plate, but I took him out quickly, I don't trust him on anything these days with height these days..can't risk a blow to the chest! He's taken to pulling up and climbing on everything. He heads straight for the stairs when set down in the living room and so far has only been able to "shimme" his way up to reach things on higher steps. He will pull to stand on the steps, but hasn't quite figured out how to climb them, but it seems to be right around the corner. I am in denial about stair gates. I finally had my stair rail fixed, oh well... He can't stand alone, without holding onto something, but he sure is trying. It makes him so mad when he tries and down he falls! The other new "favorite" is to play in the cat food. Parker loves picking up the cat food pieces and eating them - GROSS, but great fine motor work!!! Our cat eats food that is a small round circle, really small and hard to pick up!!! He's made a lot of improvement in this area..this week he's self-feeding watermelon, bananas, peas, mandarin oranges, and almost all of it makes it to his mouth! We've been working with his socks (holes cut out for forefinger and thumb only) during the day with cheerios and uncooked pasta as well as peg board puzzles and it seems to be helping! Still playing games with the straw, but we keep trying.

Parker is even more vocal than usual too. He's making all kinds of new sounds and has some new words, (banana, diaper) and lately he's been laughing when playing with his toys alone. It is the funniest thing to hear him in his play area laughing hysterically!

No Drs appointments this week, the following Wednesday we see the Cardiologist again. The incision is doing well, the bump...well, it certainly is a bump..I am told by the experienced Moms it goes away with time. With more chest muscle development and growth it protrudes less. Still trying to get my arms around that one, but am praising God for his goodness and trying not to stress about a "minor cosmetic issue" as my Cardiologist put it.

School starts tomorrow for the kids; to bed early for all!

Blessings!

3 weeks Post surgery

Yesterday was Parker's post surgery appointment with his Pedi. An excellent report! He was amazed at how his heart sounded. And he said to go ahead and start treating the scar although surgery wound care says to wait 4 weeks... Mike and I put Parker in the tub this weekend, we were careful not to get the incision wet. It took two of us, Parker loves the water, loves to swim and splash everywhere. It will be good to get the "all clear" from the Cardio Dr too so we can go back to regular baths and swimming! His incision looks to be ready for treatment, but you know us..rule followers... He weighed 19lbs 6 ozs, so he's gained to what he was pre-surgery (+ a few ozs). A few more ounces and he will "graduate" to forward car riding, YEAH!! Parker has a "bump" on his chest which we are told is normal when they break the breastbone. Pray that it flattens as he heals. Doesn't bother him any, it isn't noticeable all the time, but when he arches his back it seems to "bump" a bit. He is pulling up everywhere. His favorite new thing to do is pull up from his stool to stand and he's able to pull himself up on the coffee table and is working on navigating around the table. This requires supervision since an unexpected topple could be quite problematic at this point.

Today is 3 weeks post-surgery. To say we are amazed would be an understatement. We are busy preparing for back to school. Middle school orientation is Thursday and meet the teacher for the girls too. School starts Monday!

The continued blessing of meals from friends and family has been such a gift. While we are back to a more "normal" routine, not having to run to the store to cook dinner has been appreciated more than we can convey. Thank you never seems enough.

Parker's next Cardio appt is August 25th. We continue to anticipate God's best!

The "Zipper"

wow, serious neglect to the blog! Seriously, we have been enjoying being home!!!! I did a better job at the caringbridgepage last week, so sorry! So, Tuesday we got the stitches out and saw Parker's Cardiologist who I love. She said everything looks great. We see her again on the 25th of August. Parker sees his Pedi on August 9th. I have finally peeled all the steri strips off his incision and so here it is. Forgive me for those of you that don't want the graphic details, too late! For 1.5 weeks post surgery I am impressed. The scabs are gone for the most part and I think by the 9th I can start working on mederma or some home remedy to minimize the scar (leave me a comment on what works best please). Being home we forget about the surgery at times, but the scar will bring you back home to what he endured. The chest tube area is still scabbed, so I have bandaids on them for now. And Parker can only have sponge baths, so forgive the adhesive gunk everywhere too. I have the adhesive remover squares they gave me at hospital, but goo gone seems to be better. I will work on that next week, Parker doesn't like sitting still for me to pick the adhesive off. Imagine that!

Parker is on no meds, I quit the ibuprofin on Wednesday, just not necessary. He's had no issues with his schedule. Back on schedule for naps and bedtime. We are feeling much more comfortable with his activity and not so worried about him hurting himself. Interestingly enough he is pulling up on everything. He had started this before surgery, but now he is really interested in pulling up on things. He is cutting a tooth on the top front so he's biting everything too.

Two more weeks and the kids are back to school! The summer was quick with baseball and surgery. Hopefully this fall or holiday season we can take a late vacation. We shall see how things progress.

Parker and I are at home listening to live broadcast of church since we can't go in person. Our church has the most amazing worship and creative arts teams and the music is so inspiring. All of you know how music is so impactful to me. Parker has that same love for music! He is singing and dancing to the music. Such an appropriate song for today...

"And the cry of my heart is to bring you praise! My soul cries out! From the inside out Lord my soul cries out. Everlasting your light will shine when all else fades! And the cry of my heart is to bring you praise!"

Words aren't enough to express our gratefulness to each and everyone of you that have prayed and cared for our family during this time. One day when I can compose the words I will write more, but know that each one of you is a gift and a treasure!

Hug your family tight today!

Blessings!