Hippotherapy for James

Contrary to popular belief, "hippotherapy" is therapy using horses, not hippos.

James LOVES horses, so I was excited to start hippotherapy at Hope Landing once he turned 3. It was even better that we got to start just a wee bit early. James was a little hesitant to get on the horse, but--with enough cheering--he made it on. His smile was so sweet as he took in the new experience.

His occupational therapist (Gena) works with him on posture and balance. He also uses signs and words to direct the horse. The horse handler is Kim, and she is pure cowgirl, and excellent with the kids.

I had arranged with Kim that if Caleb expressed an interest in riding, she would give him one riding lesson (and maybe more if the interest grew). However, as much as he cheered his bubba on, he hasn't really cared to get on a horse himself. Every boy is different!

If you want to see all the photos I took that day, you can check out the full gallery.

Hope Landing Talent Show 2013

Every year, Hope Landing has a talent show to showcase all the wonderful things the kids can do. Last year, James rocked out to Great Balls of Fire. This year, he showed off his alphabet skills. I was so excited at how well he did. (Disclaimer: he doesn't enunciate very well, but *I* know he got the letters right!) And I loved that Caleb had a part, too. I was a little afraid he would have stage-fright, and I prepared the OT (Gena) to take his spot if needed, but he did great! He even stole the mic at the end to say "Hooray for James."


So proud of my boys and all that they accomplish. And so thankful for Hope Landing and the way they pursue the best for our kids.

Here are some other photos from that night....

My two boys and their bow ties. Ready to go! (You can see poor James and his sty)

James with one of his Physical Therapists, Tricia.

Blowing bubbles before the show

Master of Ceremonies and Hope Landing CEO.

Entering the stage.

Dance break!

All the talent of the night, taking a bow

What We've Been Up To: James

James. My James-Man. What a stinker little boy!

We are so proud of everything James has accomplished. At almost 3 years old, he is quite the walker! And into EVERYthing. He pulls interesting things out of the trash. He topples folded laundry, or brings it to me, wherever I am in the house. Any container is free game for his desire to "undo:" box of toys, blocks, books, etc. His latest past time is getting into his brother's sock drawer. I can't tell you how many times I've caught him with an armful of socks, making his way to the living room. He dutifully picks them up and puts them back where they belong (as he does with the laundry or other messes), and then smiles at his accomplishment. Stinker.

Potty training is slow-going. I can't believe the strides he's already made, though he certainly hasn't made it. He can keep a dry diaper for several hours, and will almost always go potty if I ask him to. He will rarely tell me if he needs to go potty, but he has even started doing that a little, and I think that is awesome! He had a few days of potty training boot camp with my mom, but it only showed us that he really was not ready, yet, for full-blown potty training. For now, though, I'm perfectly happy with the progress he's made. I really had not expected him to be this far along at his age.

Our latest surprise with James is finding out he knows his alphabet! As in, if I hold up a letter, he tells me what it is--almost every single time! Again, I attribute the iPad to his success. He spends lots of time flipping through alphabet flash cards. But it was very funny the first day we figured it out, and I cautiously asked his occupational therapist to confirm what I thought: That a boy who couldn't even identify his colors, yet, knew his letters. Sure enough, the OT called me into her session with James so I could see him confidently pulling the correct letters out of a choice of three...and occasionally picking one up from the pile and saying, "P" or "8" just to surprise everyone. (Yes, he knows his numbers, too, and surprised us awhile back with counting to ten...not perfectly, but at least understanding that some numbers follow others. His favorite is, "Eight...NINE!!")

James is a man's man. Where Caleb hugs all the ladies, and tells them they look beautiful, James holds up his arms to the men in our church, asking to be held. He loves his Daddy most of all!

Beyond the developmental things that James has accomplished, he is definitely headstrong. The battle ground is usually mealtimes, where he would much rather just drink his milk than eat his food, or he would rather I feed him than he feed himself. He very easily lets us know what he wants, when he wants it. Usually with pointing, grunts, signs, and words--he uses whatever it takes to let us know! Sometimes it's, "I will not eat until I am watching the Andy Griffith Show!" Sometimes it is, "Bubba is taking my blocks, and I am not happy about it!" And lots of times it is, "I need to watching Signing Time!!!"

He has really gotten into reading "big boy" books lately, looking intently at the more detailed pictures in them. And he's playing with blocks in a more intentional way--stacking instead of just throwing.

He loves to dress up. We have a bin of hats and costumes, and he's constantly pulling on a hat and maybe some beads or something else he can put around his neck.

We enjoy watching him, and watching his mind and body grow and develop. Just like we sit back in wonder at Caleb, we watch and wonder at James. Usually a pause, and then, "Gosh, he's a cute kid." We are so blessed by our little second-born!

Newbie3 is up next!

*Note: The awesome shirts in this post were made by the super-talented Kim Davis. Visit her etsy site for your own custom-painted shirts!

James's IFSP

Today is just a normal day in the Norvell household. We had our annual "IFSP" today, which stands for Individual Family Service Plan. A lady from the Department of Human Services meets with our Developmental Therapist (Jeff) and Jon and I to make sure we're all on the same page, and that we have goals for the next year. Prior to this meeting, Jeff did an assessment of James's development, and I thought you'd be interested to know the results:

Gross Motor: 12-month range. He is not standing alone and taking steps, but he is climbing into adult chair.

Fine Motor: 18-month range. He is scribbling spontaneously, but is not building a tower of 5-6 blocks.

Cognitive: 18-month. He does point to pics in books, but is not naming two objects.

Communication: 19-month. He does point to one body part when asked, but is not speaking twenty words.

Self-help: 16-month. He does imitate housework, but does not show wet or soiled pants.

Social/Emotional: 16-month. Stranger anxiety has reappeared, but he does not pick up and put away toys.

So those are the official findings, and here are my thoughts on them:
Gross Motor: Jeff fully believes that once James starts walking, he will really jump forward in this area. Until James walks, though, he'll be stuck in the 12-month range. I am proud, though, that he continues to make progress. His "scoot," which has served him so well, is slowly turning into a hands/knees crawl. While he is not walking, he is continuing to make very good progress without plateauing.

Fine Motor: Not much to say about that.

Cognitive: This one is tricky, because I believe he CAN name two object, but he chooses not to. He is two, after all. However, there are times when I really don't know, so marking him at a lower level helps us make sure that we all work on it with him.

Communication: I'll list his words below, but this one is a little controversial. Jeff (and apparently DHS in general) does not recognize sign language as communication. Therefore, James only gets credit for the words he verbalizes. But again, it's no real harm to mark him lower than he actually is, because it encourages us to continue working with him.

Self-help: That boy is a cleaner! Give him a napkin, and he goes to town rubbing down whatever he can find. Isn't it funny that that's a developmental milestone? Just one of those things that all kids do, but no one really pays attention to. In regard to wet/soiled pants, well, I've discussed that with potty training. He'll learn!

Social/Emotional: Stranger anxiety, favoring mom over dad (when it used to be the other way around) are good signs that usually occur when a child gains more mobility. However, like is listed, he hasn't learned yet to put toys back where they belong. He will help me clean up, and enjoys and understands putting blocks where they belong, but only if I'm there directing him. Usually, he pulls everything out (books, blocks, clothes, pillows, etc.) and leaves them there. Thanks, son.

So, there is the assessment and my thoughts on them. I'm super-happy that James is where he is. Basically, he's at the 18-month range, and I think that's awesome. Of course, the blaring "no walk" makes him seem much younger, but he continues to gain strength and balance, and he'll get it eventually! I'm so proud of him.

Based on this assessment, Jeff and I decided to leave our goals as they were, with the addition of working toward building a tower of 5-6 blocks. You can kind of infer the other goals from the assessment: standing alone, naming two objects, speaking twenty words, etc. Once that is decided, this DHS lady joins us for the official IFSP, and we all check in and make sure we're happy with what's going on. Since I already had the discussion with Jeff, there's really not a lot of discussion needed with the DHS lady. We sign papers and agree to meet in another year. Jeff does a quarterly evaluation, but we only do this IFSP once a year, unless I feel a need to call one sooner. Next year we will be transitioning to receiving therapy from the school instead of from Jeff, so we'll be learning new things then.

As a matter of fact, Jon and I are going to a talk tonight that discusses our rights and other things we need to know about kids with special needs in schools. But that's a side note.

So, onto the words that James knows. James is a talker, just like his brother! It is non-stop noise around here! I LIVE for the hour of rest time in the afternoon that gives me 60 minutes of uninterrupted thought. Bliss. James is learning sign language with the speech therapists at Hope Landing, and of course he's also learning verbal speech. He's doing so well, and I've noticed lately that he's starting to do many signs and words independently instead of only repeating what others are doing. That's a great step! Generally, with the words he knows, and the "yesses" and "nos" that I get from him, we communicate just fine, but I can't wait for him to tell me stories and ask me questions. Then I think I might require TWO hours of rest time in the afternoon! Really, I enjoy every minute of discussions with Caleb and James.

Okay, I promise we're getting to the words!

Here is what James VERBALIZES. He speaks them out loud. Anything with an "(I)" means that he does them independently:

1. Mama
2. Dada
3. Bubba
4. Nana (I)
5. Banana (I)
6. Light (I)
7. Cat (I)
8. Dog (I)
9. Meow (I)
10. Woof
11. Moo
12. Quack (I)
13. Brrrrummmm (car) (I)
14. All Done (I) (First two-word sentence! Says when he's finished with things, or after we've said a prayer. So cute!)
15. Please (I) (Says when he wants his cup of milk, usually, and accompanied by the "please" sign.)

Here is what James SIGNS. He uses ASL, or usually his own version of it. Just like "banana" sounds like "nana" when kids first say it, signs are also simplified.

1. Light (I)
2. Dog (I)
3. Granddad
4. Train
5. Book
6. Boat (I)
7. Ball
8. Swing (I)
9. Please (I)
10. Milk
11. Shoes
12. Flower (I)
13. Bear
14. Elephant
15. Duck
16. Potty
17. Sleepy (I)
18. Nose
19. Mouth
20. Hat
21. Up (I)
22. Eat (I)
23. More (I)
24. All Done
25. Diaper
26. No (I)
27. Baby(I)

So you see he has plenty to say!

Of course there's more I could say about his development, but I think this post has gone on long enough! I hope this gives you a little insight into what we do with James.

October is Down Syndrome Awareness Month. If you read this blog, you know someone who has Down syndrome, which makes you much more aware than most! But, in the interest of promoting awareness, I'd love to know if you have any questions. Do you want to know anything about James? Our family dynamics? Thoughts about our future? Of course, we're only 2 years into this, and we have so much more to learn, but I'd love to answer any questions you have! Just leave a comment and ask away!

Milestones

I had just turned off the water in the shower and wrapped my hair in a towel this morning when I heard, "Lydia, come see this!"

I have a general rule to never leave a warm bathroom while I'm still wet, so I started drying off. A more insistent, "Come quick, you're going to miss it!" had me wrapping the towel around me and slipping down the hallway on wet feet.

James had a milestone yesterday--taking five steps while only holding on with one hand--so I wondered what he was doing this morning! As I slid into the living room, I saw James clumsily, yet happily, swinging a light saber toward his Daddy, who was gently tapping his own light saber on James's.

"Look! We're sword fighting!"

As I stood there cold and wet in my towel, I had to laugh at a dad's definition of important events in a son's life.


-------------------

Speaking of milestones, James and I are about to attempt a biggie: potty training.

Before you tell me how crazy I am, I kinda know. But do you also remember I took on potty training with Caleb at 18 months? It wasn't really the route I'd recommend, and we had a LOT of frustrations, but it worked out in the end, and evidently I'm a glutton for punishment.

Kids with Down syndrome don't typically potty train at 2...or 3...or maybe even 4 years of age. Low muscle tone effects every part of their bodies, including bladders...and the ability to control them!

But...let me just give you the reasoning.

• It's been a general rule with James that it will take him longer to learn things, so let's start early. I'm applying that rule to potty training.
• James has been very successful going peepee in the potty, seemingly on purpose.
• His nighttime diapers, while not dry, are definitely less wet than they used to be.
• His daytime diapers, he can keep dry for long periods of time, and then whoosh! it all comes at once. 
• He can already sign "potty." When I ask if he needs to go potty, he either gives me the sign as an affirmative, or he shakes his head.

These are all very good signs for potty training, and I don't want to miss an opportunity and end up inadvertently training him to ignore the signs and just go potty whenever, which is basically what I'm doing when I continue to let him wear a diaper.

SO...up went the rugs, off came the diapers, and out came the training undies (thanks, mom!). And yes, the frog potty is back out. When Jon saw it, he sighed, "I wasn't ready to see that again." I kind of agree, but parenting--it turns out--is not about what we parents want. Not sure the kids believe that, yet....or us, for that matter.

As I re-read my daily posts about Caleb's first week of potty training (check out the May 2010 posts), I was very encouraged. Some of the hurdles I'm anticipating with James were also hurdles with Caleb, and I'd forgotten that. But there are a few more these days, and we'll see how they go.

Possible Hurdles:

• James doesn't tell me when he needs to go potty, just answers "yes" or "no" when I ask.
• He doesn't seem concerned when his diaper is wet, though he doesn't like a poopy diaper
• He doesn't seem concerned when he finds himself in a puddle of pee, and just scoots out of it and moves on.
• James can't walk -- Others have mentioned this problem, but it's really not a big deal, because I carried Caleb to the potty and pulled off his shorts for him for a long time, and I can do the same for James.
• Our lives are busier. Now I have two kids and a daily out-of-the-house schedule. We can't just pause life like we had done with Caleb, and it's harder for me to give 100% attention to The One Not Potty Trained.

Wish us luck!

The Honey Bear

The first time we visited our Speech therapist--we weren't even starting therapy, yet, just getting evaluated--she stressed the importance of avoiding prolonged use of a sippy cup. She eyed my almost-3-yr-old sucking on his sippy and sent us home with two different cups: one for James and one for Caleb.

Since that day, I have made the transition with Caleb. He uses cups with lids and straws (Take and Toss brand) most of the time, and open cups only at the table. We had a period of time where Caleb knocked his cup over as much as his sippy (the reason we had not transitioned), but it really didn't take him too long to figure it out.

James is still taking bottles, but he is also learning how to use a honey bear cup. It's an actual honey bear (though I think the producer sells them empty) with a silicon straw stuck through the lid. The honey bear is ideal because it's so squeezy. I just squeeze the liquid up into the straw and allow a little into his mouth. He automatically swallows, encouraging more liquid out of the straw. Before you know it, tada! He's learned how to use a straw!

And you know, that's exactly what's happened. It's so cool to see him confidently grab the honey bear and take a big drink. He loves it! He doesn't sustain it long enough for the bear to replace the bottle, but we use it at mealtimes. Next, we'll start working on his ability to use the same Take and Toss cups that Caleb uses. His liquids are thickened so much that I don't think he will be able to use an open cup (imagine drinking applesauce from a cup). But who knows; I never would have guessed he'd skip the sippy, and look at him go!

This time last year...

People often get sentimental around birthdays. One of the moms I read often was very sentimental about her child's first birthday, even to the point of visiting the hospital room in which she gave birth. And it was right for her, because that birth changed the course of her life in a way she'd never imagined. I thought James's first birthday might do the same for me, but it didn't. His birthday was a whirlwind, and it was fun and wonderful, but it wasn't sentimental really.

However, today is the anniversary of James's heart surgery. This day last year, I was handing my tiny boy over to Mike the nurse, and really, by this time in the day, I was learning about chest tubes, how to read all the numbers on the numerous machines gathered around James, how to knit, and how super-scrubbing hands enough times in a day can chap your skin faster than anything else I know.

When the holidays officially began at Thanksgiving, I was reminded how, a year ago, Jon and I had just brought James from an appointment at Children's, where it was decided he would definitely undergo surgery. It was just a few days later when we received a call with potential dates for surgery, and we chose the earliest one. I remember how rushed Christmas seemed, and how unimportant all the hubbub was compared to saving my son's life.

And yes, while we probably could have held the surgery off another week or two past Christmas, I truly believe it saved James's life. His pale pale skin, his listless eyes, his lack of energy to nurse or take a bottle, his overall stillness and perpetual sleep.... Now I cringe when I remember the pre-surgery James. How did we make it those 3 1/2 months of his life? How did HE make it?

When James awoke from surgery, he truly awoke. He drank full bottles of milk, he kicked his legs, and he gave his first beaming smile to his Grandpa when he came to visit. His transformation brings tears to my eyes even as I write this. Our son was finally with us--not struggling to survive, but really with us as a baby should be, to enjoy and be enjoyed.

Now, as I think about James and finding his balance between contentment and striving toward the next milestone, as I think about those few little inches he scooted forward all by himself yesterday, and how the little man who could barely gain an ounce is now weighing in at 20 pounds, I can't help but be sentimental.

Last year, we made it home from the hospital, miraculously, just in time for Christmas Day. It felt a little like having a newborn again, dealing with new things like incisions and eating schedules. It also felt like we could finally get started on our life as a family of four, that we'd all been holding our breath until James was well.

And today, well, today it feels pretty great. I look down at James, who is sitting in my lap, facing me and pushing up strongly on his arms so he can look me in the eyes and giggle, because he had been in the crib crying about not wanting to nap, and now his mama saved him. This time last year was the beginning of James's life. A day that truly changed our lives forever.

James: 10-month Check-up

Yesterday, Caleb and I took James for his 9-month check-up that has been rescheduled so many times, it became his 10-month check-up. Caleb is very much a part of the process, as he feels that he is doing his part as the big brother to bring his little brother to the doctor. Since we have been going monthly for RSV shots, Caleb has gotten the routine down. But I was glad to tell him that James would not be getting a shot on this visit. (As a side note, the "RSV season" has ended, and we won't be getting the shots from now on. I don't know if they'll start back up next season or not.)

The visit was very productive, as Dr. R was more congenial than usual, and answered my many questions. But first, the stats!

Weight: 16 lbs, 6 oz  -  50%
Height: 28 in  -  75%
Head circ: 41.3 cm  -  45%

So my little man has gotten some length on him! I still haven't gotten around to moving him to 9-month clothes, but mostly because he's in shorts all the time. 6-month footies would probably not fit him very well.

Questions I asked:

1. Circumcision ok? James's circumcision doesn't look like a normal circumcision to me, and Dr. R said that he has adhesions, which my mom says is scar tissue that pulls skin together where it shouldn't. Dr. R said it should break up between ages 2 and 3 years, and if not, James will undergo another circumcision. Yikes. It doesn't seem uncomfortable to James, and it's not causing blockage or any other issues, so we'll just wait it out and make that decision when necessary.
2. Belly button ok? Ever since James's surgery, his innie belly button has been an outie. That's usually a sign of a hernia, but Dr. R said that if it was a hernia, it was a very small one, and that it should close up on its own. I have noticed the outie is not as much an outie as it used to be, so hopefully that's true.
3. Chest shape ok? Jame's rib cage is a bit of a mystery to me. It's concave at the top, flares at the bottom, and has a large bump over his heart. Dr. R says that the flare at the bottom is probably a result of his heavy breathing prior to surgery; his lungs pushed his ribs out. The bump over his heart is supposedly normal, and everyone's chest over their heart is larger than the rest of the area. I do not find this to be true in the rest of our family, but whatever. As with the other questions, James's chest shape is nothing to worry about, and should right itself with time.
4. Diet into his first year? Dr. R said it should be no problem to move James to cow's milk at his first birthday. We'll still thicken it, of course, but he should transition fine from formula. He also said that baby food would be fine, if James wasn't ready for table food. I guess I knew the answers to these questions, but I still wanted to ask to make sure I was on the right track. This is just one of those instances that shows how I feel like a new mom with James!



James and his therapist

5. Further therapies? I've asked our developmental therapist about starting other therapies with James--speech, physical, occupational--and he has been reticent to recommend it, feeling that what he was doing was sufficient. However, Dr. R feels there's no reason to delay, and I think I agree with him. A faith-based place for special needs children, called Hope Landing, is sending me a large packet of information and forms. Once I've gone through all that, James will be evaluated, and we'll be given a recommendation as to what therapies he currently needs. As a child with DS, he will probably qualify for all of the above therapies, and we could end up going to therapy every day of the week if we chose to. However, we have been cautioned by other families with special needs to not revolve the whole family around one child, and that we don't have to accept every therapy that is offered. Choose the ones that are important for James at the time. So that will take some prayer and wisdom from us when it comes time to make those choices. Hope Landing does not send therapists to the house (unlike the developmental therapist), but it is in town and not too far. It seems like a neat place that incorporates prayer and spiritual development into its plans, plus there are some programs that allow sibling involvement as well. So, I'll probably be writing more about them later.

Little Man loves his toes!

And that's it! That was the doctor's appointment. Very informative, and we don't go back until 12 months. Before that time, James has an appointment with the genetic clinic at Children's and a follow-up appointment with the cardiology department at Children's. I think his heart doctor will be happy to see how much he has grown, and how well he is doing!

Today's update

The weekend is much slower around here, but just because it's Sunday doesn't mean nothing's been done. James had another x-ray this morning, and it showed that the fluid around his lungs is clearing nicely, even with the decreased diuretics. Hopefully in the next couple of weeks he'll be off that medicine completely.

The other medicines he's taking include something to help his heart function and something to help his low thyroid numbers (hypothyroidism is common with DS, and we found out James had it with the pre-op bloodwork). His low heart function is common after heart surgery, but his is a little lower than expected, so the drs have been watching it. They want to give it a little time, which is why it seems as though we're just waiting around at the moment. The nurses brings his meds--which we administer (the oral ones, at least)--and we are in charge of feedings, bathing, and diaper changes. Hopefully Monday's echocardiogram will tell us that his heart function is back to normal, and we can head home!

We've heard a few estimates for our home-going, and none have been later than Tuesday. I can't believe we'll be home for Christmas! I suppose something could still happen, but so far things are going well.

For that reason, my mom is heading home today. My dad came up for the weekend, so they'll head home together and then be on their "Christmas tour" to see all the family. Jon went home last night to check on things, and he's headed back up today. Then it'll just be he and I in charge of our little bundle. Caleb is still with Nana and Grandad and loving it, but I miss him. It'll be good to have our family all together again soon.

Surgery for my baby boy

I'm sorry I haven't updated this blog enough over the past few months. Besides the picture posts I am trying to catch up on, I have had so many thoughts and updates about the boys. However, some things just don't get done, and when things get crazy, the blog is one of those things.

James has Down Syndrome. I mentioned that once, and at that point I hardly thought we'd need to mention it much more. His doctor declared him a healthy baby with no problems other than this extra chromosome floating around. However, during the first few weeks of James's life, we struggled to get him to eat, and I believe we really fought for his life. Our doctor was still sure that things would work out just fine as long as we kept doing what we were doing, but we were struggling to get even a milliliter of milk in him, at a time when he should have been taking in hundreds of milliliters. I breastfed him almost exclusively for the first week, until a weigh-in before and after a feeding revealed that he wasn't taking in any milk. At all.

When I think back on that week and realize that he hadn't been getting any kind of food, I shudder. And I thank God for a friend, Kathy, who recognized that James was in trouble. She used to be a neonatal nurse at the hospital, and she supplied me with preemie bottles and nipples, a scale, a daily check-in, and a wealth of information about how to best help James conserve his energy. He slept most of the time, never cried, and was a very lethargic baby.

Slowly...slowly...James gained weight. Our doctor felt that all was going well, and even began to doubt that James had Down Syndrome. However, we finally received the chromosome test that confirmed he indeed had DS, and our doctor referred us to a pediatrician in town (there are very few pediatricians here, so most people take their kids to a family dr.).

Our new doctor, Dr. R, is known for being pretty brusque. Very thorough, but no bedside manner. He came into the room with confidence, and began to examine little James. In the silence, Jon remarked how grateful we were that James's heart was healthy, which is uncommon among Down Syndrome kids. Dr. R looked up sharply.

"Oh James has a heart murmur. A pretty loud one."

Those words confirmed our fears. James's sleepiness, his struggle to gain weight, his hard breathing--we didn't know if that was just a typical DS baby, or if there was something more wrong. A heart murmur made sense.

We were at the Children's Hospital in Little Rock the next day.

Children's confirmed a hole in James's heart, called VSD. The hole was causing some of the chambers of his heart to have high pressure, some to have low. One of his valves wasn't closing correctly because of the hole. There was fluid building in the tissues of his lungs. His heart was working as if he were running all the time. We were sent home with diuretics and formula to add into the breastmilk.

The change in James was dramatic. We began celebrating ounce after ounce of weight gain, and then half pound after half pound. He was awake more often, and then he began to kick his legs, notice his surroundings, and even start to cry a little when he got hungry. However, his breathing was still labored and he was well below the weight he should be. The day before Thanksgiving--our most recent visit--confirmed that the hole was not closing up. The high pressure on his lungs would eventually cause long-term damage, and the aortic valve was starting to show signs of distortion. The doctor gave us strict orders to keep James away from any possibility of contracting RSV (which could land him in the hospital and cause severe damage), and he suggested we come back for surgery within 4-6 weeks. The nurse called the next week with a surgery date in two weeks. The 14th of December.

The past two weeks have been stressful. We've kept James away from infection as much as possible, learned about the surgery and the procedures surrounding it, and come to terms that our tiny baby boy was going to have open heart surgery.

Tomorrow we leave for Little Rock. Monday is a day of pre-op tests and talks with the doctors. Tuesday is the surgery. I'll do my best to keep you updated on this blog. I know so many people are praying for us. God is good, and has shown His provision for us in so many ways these last few months.