Something to Smile About

SDC10391

Jesse’s appointment at Shriner’s yesterday went very well.  We had no problems taking the airplane, and it was great to give me a break from all the driving.

Jesse’s left foot looks fantastic!  I’m amazed by the visible difference each week.  Dr. Aiona is almost positive that he will not need the Achilles tendon surgery, but will do X-rays at our next appointment just to be sure that all the bones are lining up correctly.  From the way his foot looks, though, he said he would be shocked if things weren’t just perfect!

We are praising God, doing our “happy dance,” and are so very thankful for this great news!  Thank you for all of your prayers, too!

He said that we are done correcting the position of Jesse’s foot – it is turned out nicely and can flex to 90-degrees or more now!  Hooray!  Now, we just need to hold it in that position for awhile so it doesn’t revert back.  That means that this cast (#5) gets to stay on for 2 weeks.  Then, we’ll do the X-rays, and if everything looks o.k., he’ll get another 2-week cast – his last!  After that, he’ll be fitted for braces.

So, it looks like no surgery, only one more cast, and less frequent trips to Portland…

And that is definitely something to smile about!

SDC10392

Advertisements

Jesse’s Club Foot – the first 4 casts

This is a long post … if you don’t have time to read it all, please just skip down to “Week 4” and say a prayer that Jesse’s foot may be healed without surgery.

********************************************************

Week 1:

We were a little unprepared for our first visit to Shriner’s hospital in Portland.  The process to correct his foot is more involved than we were anticipating.  (I know, with our professions we should know this stuff – or, at least have spent some time researching it!  But, we were in denial for his first month – just wanting to enjoy and love our baby without worrying about medical interventions.)

Jesse’s doctor, Dr. Aiona, is the chief of staff at Shriner’s – so we are truly blessed to have the “best of the best” taking care of him.  We learned that the usual process to correct his foot involves weekly casting for about 6 weeks, then a surgery.  The casting portion slowly stretches the tendons in the foot to straighten it from left-to-right, and the surgery is to allow his foot to flex (toes toward nose).  After the surgery cast comes off, Jesse will need to wear a brace for 23 hours/day for a couple years, then a brace only at night for a couple years after that.

It came as a bit of a shock to me that he would need surgery – I wasn’t expecting that, and definitely not looking forward to it!  The surgery involves cutting the Achilles tendon, then placing him in a cast for 3 additional weeks to allow the tendon to heal.  Dr. Aiona uses the “Ponseti method” for correcting club feet, which as far as I can tell is not only the most minimally invasive method, but is also shown to have the best results. (I did do my research later!)

We were surprised by the size of the cast, too – I guess we didn’t expect it to go all the way up his thigh!  They cast it this way to keep it from slipping and cutting off his circulation.  He was a trooper, though, and gave us some smiles even though his cast was rubbing his skin raw where the edge of it met his thigh.

First cast

First cast

IMG_3845IMG_3844IMG_3843

IMG_3847

Week 2:

Just Jesse and I returned to Shriner’s for a cast change.  Engraved in stone on the waiting room wall, it reads: “SHRINER’S HOSPITAL FOR CRIPPLED CHILDREN.”  Crippled….  That’s not a word we hear very much these days.  It really hit me then – we’re here because Jesse is crippled. Crippled!  At least, that’s what he would be without treatment. Thank you, Lord, that we have access to medical care, and for these doctors that can heal Jesse. Another time or another place – he would be crippled for life.  Suddenly, the long drive to Portland doesn’t seem so bad – after all, wouldn’t a parent do anything to heal their crippled child?

I was surprised by how much straighter his foot looked already – there was definitely a visible difference after only 1 week of casting.  Dr. Aiona was evidently impressed, too, because he asked me twice if this was really only his 2nd cast.  He said his foot was looking great.  That’s what we wanted to hear!

SDC10341SDC10338

Driving home, I was exhausted.  Driving 4 1/2 hours each way with an infant was taking it’s toll.  I’m thankful we have family and friends in the Portland area that let us stay overnight, so I can break up the trip a little bit.  But, it’s still a lot of time on the road, and a lot of time away from Micah and Matthew.  But, I’m so thankful that Aaron was able to re-arrange his schedule so that he has every Wednesday off.  He gets to stay with the boys and have some fun Daddy-time with them.

Week 3:

It felt like I just got home, when it was time to pack up and leave for Portland again!  I was so behind with everything – laundry, house cleaning, meal preparation … everything had just been exhausting, and it seemed like I didn’t have the energy for any of these “extras.”  Jesse and I got loaded in the car, kissed the other boys good-bye, and were off.  Even with music, and books-on-CD, and even though I do enjoy a little bit of the “quiet time” on the road, the drive to Portland is just long. The Columbia gorge is beautiful the first couple times you drive it, but after awhile, it just seems desolate.  There is nothing for the 2 1/2 hours between The Dalles and Umatilla!

Lord, you said if we have any faith at all in You, You can move mountains.  I don’t need you to move a mountain, but I do need you to move a major city!  Driving this much every week is so hard – I need you to somehow make Portland closer.  I don’t care how you do it, but I know you will.  Thank you!

Dr. Aiona was impressed with the progress of Jesse’s foot.  He again had to confirm that this was only his 3rd cast, and told his resident, “This is the best looking foot we have!”  He said that Jesse will probably need 2-3 more casts, then he’ll be ready for surgery.  We would know more next week, and perhaps be able to schedule the surgery.

Oh, how I dread putting my babies in surgery!  Dr. Aiona uses general anesthesia for this, which means Jesse will be completely out, and feel no pain during the procedure.  (He will also hold perfectly still so Dr. Aiona can do a good job!).  General anesthesia has its medical risks, however, and (the hardest part) Jesse will not be able to eat for several hours prior to the procedure.  Jesse is a hungry, growing boy, and this part will be hard on all of us!  Dr. Aiona said that most babies do well with just Tylenol after the surgery … but if my achilles was severed, I would want more than that!  Oh boy – dealing with post-surgical pain is so hard.  At least he won’t remember any of this, right?  And it will all be worth it when he takes his first steps.

Micah was really hoping for a “purple cast” this time, but instead we let him decorate it with dinosaur stickers.  Jesse’s smile was all he needed to feel that his efforts were appreciated.  After all, who wouldn’t want a dinosaur cast?

SDC10356SDC10357SDC10346

Later in the week, a friend came over to help with the boys so that I could get some things done (thank you, thank you!!) She mentioned that she had just taken her daughter to college in Portland, and flew home on the little commuter flight into Pendleton.  She wanted to make sure we knew about those flights, because they were quick, easy, and inexpensive.  When we first started going to Portland, I looked into flying, but all flights went through Seattle, and were far too expensive.  I hadn’t thought to look at flights out of Pendleton, though (a little town about 45 minutes from us.)  Acutally, I didn’t even know that Pendleton had an airport!

Sea Port Airlines operates little 8-passenger planes, and charges $75 each way.  They have round-trip flights 3x/day, and even let you keep your shoes on.  When I called, I got a “first-time flier” discount on one of the flights – I’m only paying $29 to come home!  Looking into options for ground transportation, I found that Shriner’s has volunteers that provide transportation to and from the airport at no charge.

That will do, God.  That will do.  Thank You!!!

Week 4:

We didn’t quite have the details of flying in time for this week, so we drove again.  A friend from college (who I hadn’t seen since Matthew’s heart surgery!) met us at Shriner’s to keep me company and help out. She even helped me give Jesse a mini-bath in the sink between casts … believe me, he needed it!

Dr. Aiona had great news for us – Jesse’s foot looks fantastic!  I was amazed by how straight it looks, and Dr. Aiona had to double-check to make sure he was casting the correct foot!  He told us that in a very small percent of club foot cases (2-5%), surgery is not necessary.  He said that Jesse might fall into this category, but we’d have to wait another week or two to see.  If Jesse’s foot can flex to 90-degrees or better, he won’t need the tendon surgery!

Look how straight the cast looks – he was even able to get his foot turned out slightly!  This time, decorated by big brother with some animal stickers, some coloring, and a “J” for Jesse!

SDC10363

4th cast

SDC10365

Please pray that Jesse’s foot will be healed by casting alone and that surgery will not be necessary.  It would be so wonderful to not have to go through all of that, even if it means a few extra weeks of casting.  We want him to have the best outcome possible, and if that means he needs surgery, so be it.  But, if he could be spared all that pain, it would be fantastic.  Prayer has helped us beat the odds before, so we would very much appreciate prayers for healing and stretching of that achilles tendon!

i did it.

IMG_3822

What did I do?

Well, I beat the odds.  I lived.  I healed my heart, and lived when the doctors said I wouldn’t.

Then, I sailed through my open-heart surgery, spending only 5 days in the hospital.

I started eating on my own, got rid of the feeding tube, and breathed without the help of oxygen.

And, I was just getting started.

IMG_3820

I rolled over.  I sat up.  I learned to crawl.

I took my first steps.  Then, I took thousands more steps, with each one getting faster and more steady.  Now I can go anywhere . . . grass?  uneven ground?  dirt?  rocks?  No problem!!

I can even climb up and down stairs now.  By myself.

That’s right!  I did it!

IMG_3831

I have learned to use over a dozen ASL signs to communicate, and I can feed myself with a fork.

And, along the way I’ve managed to charm everyone I meet.  Yup – I guess I’m just that cute.

I did it, alright – I did it with an extra chromosome.  And, I am just.  getting.  started.

I think you’ll agree that I deserve a round of applause.

IMG_3812

.

.

Oh, and did I mention I have a desk job?  Answering phones, taking messages . . .

IMG_3851

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

We got the “i did it” shirt from Jennifer at Three’s a Charm.  She is using the proceeds from the shirts to give copies of Gifts 2 to parents of kids with an extra chromosome.  You can read more about it and the “i did it” campaign here.  You can even become a fan of “i did it” on facebook, and see other cuties sporting the shirts.