Denial

This post has been a long time coming.  And I think it's where I've been hiding most of March and all of April. But it's time to get my head out of the sand.

Late last summer, I wrote about number 6 and how I was terrified of this number.  And I wasn't convinced.  My intuition turned out to be correct and after a couple months, a few tests and no real change our NS agreed that we should hold off on a tethered cord surgery for now.

Fast forward to clinic last week.  Things seemed to be status quo, no real changes.  Nate continues to progress and we were all set to get him into an intensive therapy program that our buddy Grey had been doing had has had great success with (we love you Grey and are so excited for all the progress you are making!) We had brought the paper work for our Ortho to sign off on and knew that this would be something that would greatly benefit him.

Funny how plans change. 
I think in the back of my mind I always knew.

 

(Took these photos weeks before clinic) 

Our ortho agreed that his foot was getting worse, and when I asked her what was the cause she said all signs point to a tethered cord. (Click here if you want to read more about tethered cord.) However she said it wasn't problematic and with the proper bracing he could function just fine with it. 

Then we saw Dr. Bowman, Nate's Neuro Surgeon (or as Nate kept referring to her, Mr. Bowman).  She was right back at it with pushing for a TC surgery.  I was actually sort of annoyed.  But we agreed that he needed another spinal x-ray to check on his scoliosis and to see if it has worsened.  I kept thinking, I thought TC happened when kids were symptomatic.  Showing "red flags".  Nate isn't showing any!  Why does she keep pushing so hard for this? I thought if he was showing some of those "red flags" it would help me feel more at peace about moving forward with the surgery.  Because I was really, really in denial.

Well, the NS's nurse called later that night with the results of his spinal x-ray (still not sure why they didn't have it read while we were there).  And there it was, the reddest flag of all.  His scoliosis had in fact worsened.   By 14 degrees.

The plan is:
-To get an MRI to check his ventricle size (it's always the shunt, the shunt, the shunt until proven otherwise).  Also to check to see if his syrinx (fluid build-up in the spine) had changed.
-Have another CMG to check to see if his bladder function has changed.  We were also in talks with the Urologist to have a deflux surgery this summer.  It's outpatient and minimally invasive.  Not sure how that will fit into all this.
-Follow up with the spinal specialist we saw nearly a year ago.
-Have another "pow-wow" (Dr. Bowman's words, not mine) after we have all the info from the above and decide on a date for surgery.  Probably sometime in June/July.
-Obviously there won't be any Intensive Therapy this summer.  Talked to the coordinator and we'll try for some mini-sessions on his off days from pre-school in the fall.

I just feel like this dark cloud is looming at the end of our summer.  I don't want to see my baby have to go through another surgery.  I don't want them to have to cut his back again.  I think deep down I know that this is what is best.  But on the surface I'm still in denial.

Solution: Ikea and a 3 letter word

Nate is doing really well with his wheel chair. Although the transition from the small loaner one to his bigger one was a little sketchy at first, he has adapted beautifully. I haven't had much opportunity to get him out into big, open spaces much but when I do he just goes! Recently my mom and I took him to a Christmas party through his therapy place, and it was at an old roller rink. There was no skating so all the kids were flying around on adaptive bikes and their wheel chairs. I don't think I've ever seen Nate go so fast in his chair! Pictures to come.

One thing I noticed right away that we were having trouble with was finding a place for Nate to play while he was in his chair. He was too low to roll up to the dining room table, and too high to roll under a coffee table. We tried the couch or a chair but those were awkward and he ended up playing off to the side or bending down really far to play.

Solution: Ikea.

We found this table there that adjusts to three heights, the tallest being the perfect height for his chair. The great thing is that we can also lower it so he can practice sitting in a little toddler chair at the table, too. It's worked like a gem and gives him a great place to play.








We have also been working hard practicing walking in his RGOs. I use the word walking loosely right now. He doesn't really have much interest in doing what it takes to actually walk himself (which, in his defense, is a series of several steps in succession and is probably a lot for him to remember). To get him motivated, I bribed him with stickers. If he walks to the end of the hallway (which is not a short distance-all the way across the living room and down the long hall to his room) he gets to pick a sticker to put on his walker. I only had Sesame Street stickers so far, but recently also got dinosaurs and sports stickers which he was really excited about. It seems to be working...a little. Still not really motivated. But we are working on it. We try to get him to walk the hall twice a day (once with me and once with Ryan). Depending on our schedules that doesn't always happen, though.



Today Ryan took him to a Children's Memorial satellite campus in New Lenox. It's still about a 45 min drive, but a much smoother ride than driving into the city. Our Ortho thought it might be a good idea for Nate to have a therapy session with someone who has worked with kids his age in RGOs before (our PT has only worked with one other kid who had RGOs and he was much older). I think Ryan and I were hoping this PT would have some miracle advice for us, but no such luck. Nate had pretty much the same session as he does with is EI therapist. But any practice is good practice. We'll just keep plugging along.

And in closing, I just had to post this. Tonight I was putting some clothes away while Nate was playing with is word builder (which he is very fascinated with lately).



He will sit there for the longest time, trying a different trio of letters to see if it will sing the song to tell him he made a word. When he finally got a word and I looked to see what it was, this is what I found



I thought it was really cute, and Nate was pretty excited, too!

The Burnett household is nothing short of crazy right now, but this Friday I look forward to having 16 days off!!! Hopefully I can finally catch up on some blogging!

And so it continues...

Our wheel chair saga is not over. (Omgosh, is wheelchair one word or two? I'm pretty sure I type it differently every time I write it!)

Nate had another fitting today, with the new wheels. The guy came two and a half hours early. Just as Nate was going down for a nap. And then when Ryan put him in his red chair, he started crying. Not a good sign. Long story short-wheels are better but there is a problem with the seat height now. Which requires some little tool thingey that the guy (surprise, surprise) didn't have with him. So we are set up again for the end of next week.

Sigh.

Later after I got home I was talking to Nate about his red chair. I asked him, "Did you like your red chair?" His response? "Like the blue chair."

And continuing the fun...the bladder test I mentioned the other day turned out to be just a renal ultrasound. Which I knew was not right as soon as Ryan and Nate left Children's and were headed home. A few phone calls confirmed that he also needed a video-urodynamics (which fills his bladder with a saline solution to see how much it can hold, while taking a video to see at what point there is reflux to the kidney-or that's at least how I understand it-we've never had this procedure before).

So, it's back to Children's on Nov. 3rd for the correct test. Trying to set up clinic for Nov. 16th. Feeling anxious about it all.


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I am incredibly behind in pictures. Stay tuned for pumpkin patch, fall photo shoot and happy-to-be-reunited-with-Aunt-Gina pics (she is officially HOME as of a half hour ago!!! No more two and a half hour flight to visit her in Orlando-now it's just a two and a half hour drive to Milwaukee!!!)

PS-I can't find the cord that connects the camera with the video to the computer so I can't upload video of him in his chair just yet. Please let this picture serve as a replacement for now! :)

The waiting game

I called exactly 6 weeks after we ordered it. And, surprisingly, it was in.

So we went to pick it up. And when they wheeled it out, it was red. Red, as in the opposite of blue which is what we ordered.

And then there was this little problem where Nate could barely reach the wheels. So we ordered bigger ones. And made an appointment for the following week. Which was cancelled. And rescheduled. And cancelled again. We are hoping and praying that this Tuesday's appointment will finally be the one where Nate gets his chair. His red chair.

Sigh.

Here is a picture of it from our first appointment.





Fortunately they did have a loaner chair they let us use so Nate has been tearin' up the town in that one. It's actually the first model we were going to order but had second thoughts about due to how small it is. He barely fits into it now, and it won't allow much room for growth so I'm glad we went with the bigger one. Although he is learning to maneuver the loaner one quite well and it is low enough that he is able to pick up things he drops on the floor. Anxious to see what challenges his new one will bring. Today we took him out in public for the first time (to church) and he had a ball. Everyone was so impressed with how well he gets around.

In other news, Ryan is taking Nate downtown to Children's tomorrow for a bladder test. This was one that was scheduled to determine if his bladder function is deteriorating which will help decide if he needs a detethering surgery. We need to follow up with a clinic appointment next month. This is more of a waiting game...waiting to see what the text results say and whether Nate will need another surgery. We have been trying not to think about it for the past several weeks but it's been like the big elephant in the room. Hoping for positive test results that will buy us some more time.

Took some video of him in his chair-going to post soon!

6

Right now i am terrified of this number.

I am still trying to dissect everything that happened at clinic today. It was quite a whirl wind that lasted hours later than it was supposed to (as it always does).

Good things: We got Nate's RGOs and they are so awesome! RGO stands for Reciprocating Gait Orthosis, and they are leg braces that will help aid him in learning to walk. It's been a bit of a long road trying to get them (today was no exception but I will spare you all the long scheduling-conflict story). Our PT comes tomorrow so we will be trying them out for the first time and we're so excited. Pictures to come!

Also, Nate was a ROCK STAR all day. Our first appoint was supposed to be 8:30 but didn't end up happening until much later in the afternoon so we were there until 3:30. We got several comments again from the staff about what a laid-back, easy going, well behaved little boy he is! Aside from having to ask for more diapers because as I have mentioned in previous posts, when it comes to BMs he is all or nothing and today was an ALL day, he was so good and it made our long day go that much smoother.

So back to that dreaded number 6.

The neuro surgeon basically had a conversation with us about his 6th surgery-a detethering. NOT what we wanted to hear. Honestly, I'm still not sold. We only recently started clinic at Children's and between what medical records they actually received (you'd think when you ask a hospital to send ALL medical records, that's what they would do) and what tests we have had done over the summer, they are still trying to "piece things together". Those were our neuro surgeon's words, and not exactly the most comforting. My problem is this: I just have a really hard time agreeing to a surgery that will only put him several steps back when we have been doing nothing but moving forward. Plus, we don't see anything symptomatic-it only shows up on paper or x-rays. Just really hard to grasp. Ryan and I have a lot to talk about. The plan right now is to go through another slew of tests, x-rays and another clinic appointment in 3 months and reassess from there.

So, right now we are going to pray. And ask if you are led, to please pray for wisdom for Nate's doctors, clarity in communicating with us, and peace in trusting in God's plan. And if as you read this, you have a little one who has been through a tethering surgery or are considering having one, we would love some feedback from parents.



Here is an updated pic of Nate's eyes, which are healing nicely. I'm still hoping Lefty will come around a little but overall there is definitely a positive change!

We've finally decided...

...and ended up with a happy medium. And I finally feel good about it.

Dan the wheel chair man (it has a nice ring to it, doesn't it?) came by earlier this week with two models for Nate to try out. One was teeny tiny and the other was quite big for him.



He got around great in the teeny chair and even protested a little when we took him out of it. It fit him near perfectly...but it just wasn't right. Although the chair would "grow with him" I couldn't see him in that teeny chair, so low to the ground, in a couple years. And this was no easy decision. We hemmed and hawed, and sought out opinions of therapists and other families we knew had already been in our situation. The bottom line is every child is different so you just have t to go with your gut.






The bigger chair was, quite obviously, too big but ultimately it had more of what we were looking for (double push handles, lighter weight). And you had the option of getting light up caster wheels (okay, I'm a grown-up and I thought they were so cool!). Nate may not get to wear those light-up shoes like all the other kids do, but in my opinion he's got something better! Now, keep in mind this is not the actual chair he is getting. The wheels on this particular chair were 24" and we ordered 16" wheels which will bring the height of the chair way down. But not as low as the teeny one. We decided on getting him the wheels with the spokes and the hand rail (like the ones in the pic below) versus the ones on the other chair for two reasons. 1.) I am a bit of a germ-o-phobe and the thought of Nate having to actually push dirty wheels around all the time was enough to freak me out, and 2.) these are the kinds of wheels he will be having for a long time (if a wheel chair is what works best for him down the road) so we thought it best to just start with these. He was able to maneuver both chairs easily, with Dan the wheel chair man even commenting how well he took to it.



So, there you go. Picture it a bit smaller, lower to the ground, in a Cubbie blue color with his name stitched on the back. We are genuinely excited to see him be able to move around independently, at the level of his peers. I've heard that giving kids this new-found sense of freedom can be life changing for them. We're eager to see how Nate feels about it. We're also super eager for it to come in, which we were told could take up to 8 weeks (if not more). As hard as it was to make a decision, I think playing the waiting game will be even harder!

Bye bye

crossed eyes.

Eye surgery is scheduled for this Thursday, August 5th.

I guess it was inevitable. Surgery has been on the horizon for over a year since his first appointment. We're lucky we've put it off this long.

In other updates...

We've moved from University of Chicago to Children's Memorial. We made this move hoping that the spina bifida clinic would help to limit the number of trips we would have to make since many things are scheduled on one day. Unfortunately, this hasn't exactly been the case. I will say, however, that our first clinic went well-we loved all three doctors we saw-but getting new doctors always opens the doors to more tests, even if you send over your previous medical records. It would probably take me the rest of the night to type out everything we have done this summer, so I am going to try and condense it as much as possible.

Urology
A VCUG test showed that Nate still has reflux in his L kidney. The doctor was concerned that it doesn't seem to be getting better, even though we are cathing, and mentioned that down the road we may need to look into surgery.

He had a CMG or urodynamics test done to check the pressures in his bladder. He was a rock star through the whole process. His bladder filled to 280cc before he started "leaking". Still haven't met with urologist to follow up with this test yet (see Neuro below).

We are constantly having BM problems. It's either all or nothing, literally. We've had a couple bouts of 7, 8, 9, even 10 days with no BM. Lots of enemas, fruit, and miralax. Happy to report that as of today he's in the "all" category.

Ortho
We finally met with an orthopedic surgeon. We'd gone to Shriners once when he was about 9 months old but he was too young to really come to any conclusions. I was hoping that we could get scripts for RGOs and a wheel chair (although I'd heard that this was sometimes difficult to obtain-doctors aren't always on the same page as the parents) but thankfully, we loved our ortho and she was on the same page with us. Since that clinic visit, Nate has gotten new AFOs, been fitted for RGOs, is getting a lift in one shoe (due to his L hip being displaced, his L leg is about 3/4 inch shorter), and been fitted for a wheel chair. The wheel chair has probably brought me the most anxiety. Not because of the thought of my kid being in a wheel chair (I am honestly genuinely excited for Nate to be able to get around independently) but because we want to make sure we choose the right one. We still haven't technically decided, and we have a rep from the company bringing two different chairs by this week. I'll post updates/videos when we get the RGOs, walker and his chair in. BIG things happening in this department, though!

Neuro
Here's the long and short of it. Ortho found some significant curvature in Nate's spine (44%) and referred us to a spinal specialist. The spinal specialist believed the curvature could be related to tethering and referred us to our Neuro Surgeon. Our Neuro Surgeon wants Nate to have another MRI before we schedule another clinic appointment. We can't get his RGOs or meet with uro to follow up with his urodynamics test until we can make a clinic appointment. I am currently playing phone tag with the SB coordinator about scheduling an MRI. Sigh. And the saga continues. To read more about tethered cord, click here.

Sleep Study/Apnea
Nate also had another sleep study. He was soooooo good about it. He must think it's old news now, since this was his 4th one. Slept like a rock all night! The test showed that he is having bouts of central AND obstructive apneas. The good news is that the oxygen he is on seems to be keeping the episodes from being too severe. So, oxygen it is, indefinitely.

I think I've been avoiding writing this post for a long time. I like posting about the the fun family stuff and not dwelling on the medical stuff. However, if my mission is for this blog to be helpful to families who find themselves in our situation-I must also make it a point to post the medical side of things. This post was an overload, even just for me to type out, so I promise to sneak in a little bit at a time from now on.

Please pray that the surgery goes well Thursday. It's outpatient and should be quick, and although it's Nate's 5th surgery it never gets any easier to hand your baby over to someone who will take them to an OR.

Taking off

As you can see from the video I posted, Nate has really taken off with his speech. He's been getting speech therapy for a few months now and has shown lots of improvement. We worked so hard at getting those three little words together so he could tell us "I need more."

We really started noticing results after we started giving him fish oil. I had heard great things from other parents about the benefits so I figured we'd give it a shot. I found the Nordic Naturals line at GNC and started giving it to him about a month ago, mixing it in with juice or applesauce. He doesn't seem to mind the lemony taste at all. Call me crazy, but I swear that within a week he was saying new sounds. It was amazing how every other day he seemed to be making a new letter sound! I am convinced that the fish oil has triggered something and his speech has improved tremendously since he started taking it. Just the other night while reading books before bed he was pointing and saying (in his own way-not perfect words yet) things he saw in the books. He's never done that before! I am looking forward to the school year being over so I can sit in on his speech therapies and work with him over the summer. I'm sure he'll be talking up a storm in no time!

*The above picture is of Nate flying his toy plane before we actually took off for our trip to Florida. I hadn't posted it yet and thought it would be appropriate in this post, considering the title. Enjoy!

Clinic

Ryan and I decided to make the move from University of Chicago to the spina bifida clinic at Children's Memorial. We did this for a couple of reasons but mostly because trying to arrange appointments with a handful of different specialists and making separate trips to U of C for each was too much. At clinic, Nate will be seen by all the specialists in one day. Yes, that makes for a loooooong day, but only one trip. And the best part is that the doctors work collaboratively with each other-something that seemed to be a chore at U of C.

At Nate's first appointment, he will be having a renal (kidney) ultrasound, a urodynamics test (bladder voiding), a muscle test and will meet with a neuro surgeon, orthopedic surgeon, urologist and physical therapist. I am most anxious about uro (worried about his kidney reflux-praying that is better) and ortho. I firmly believe it is time for Nate to start working on being independently mobile. Our PTs think that Nate is ready and shows appropriate signs for trying some high bracing and a walker. He still struggles bearing weight in his legs but has shown some new strength. Most of all, I have a strong mother's intuition that he is getting more and more frustrated with his inability to just go. And although preschool is a year away (just a year!) I want to be sure he is ready for that-whether it's in braces and a walker or in a wheel chair. That is something else I am going to inquire about at clinic, and I hope we will be ordering one soon. I have heard great things from other moms about how much more their kids are able to do in their chairs-and that they even started talking more and becoming more social and less shy. It's a big step for us, and Nate, but ultimately one that I know is good for us to take. Our clinic appointment is May 18th.



Here is a photo of Nate on his police motorcycle that his wonderful PT, Toni brought for him. He sits up so big in it! Not into the whole rocking thing yet, but we are working on it. Just sitting in it and watching one of his letter or word videos helps him practice strengthening his core. He is getting so strong!

Neuro update

We actually received some good news from Nate's neurologist at his appointment last week. After looking over the results of the sleep study, his Dr. concluded that his apnea is not central after all (brain related) but obstructive. He referred us to have an ear-nose-throat consult and said that Nate would most likely have to have his tonsils taken out. Ryan and I were actually very happy with this news. Not that we want our baby to have another surgery, but if removing his tonsils is what it takes to get him off oxygen for good then it's not a bad deal. Plus, that means that this whole apnea thing is NOT brain related (whew!) AND we probably won't have to see that doctor anymore. Great news all around!

On a side note, from this experience I have learned to ALWAYS trust my mommy instincts. From the minute Nate was released from the NICU and we brought him home with oxygen tanks, cords, canulas, and apnea and pulse monitors I was going on and on to Ryan about how we should take him to see ENT. I was sure it had something to do with that and could be fixed and was not going to accept the fact that he would be on it indefinitely. Problem was, with all the other specialists we were already seeing we never made it a priority to check this theory. Bad momma! Lesson learned!

Here we go again

It was nice while it lasted, but as they say, all good things must come to an end. The lengthy and much needed break from seeing specialists the past few months was heaven. Reluctantly, I have made a few lately so I thought I'd fill everyone in.

Ophthalmologist
Nate's eyes are still crossed (as I'm sure you may have noticed in some of his pictures). Hi eye doc, Dr. Z, was leaning toward surgery at our last appointment in October. However, she was confident that he could see just fine. She didn't want to rush into a surgery too soon because she was worried that the muscles may get too loose and over time cause his eyes to drift out. She thought doing the surgery closer to the age of 2 was safe. The appointment is Feb. 15 and I am guessing we may be making plans over my spring break for the surgery. It's outpatient, but Nate still would have to be put under. This surgery would be his fifth.

Neurologist
It's been nearly a year since Nate's last sleep study. He still has apnea and requires oxygen when he sleeps. It's really become second nature to us, and to him I think. However he still has occasional episodes where he "alarms" during the night (his pulse oximeter detects a low oxygen level, usually below 90 for an extended period and will alarm-similar to an alarm clock). We still don't have any definitive answers as to why he has apnea and whether he will grow out of it. We are hoping that the sleep study will show improvement and possibly provide more answers for us. His sleep study is Feb. 18th.

We are also seeing the neurologist for his "hand mirroring". It's hard to explain, but his hands will do the exact same thing at the same time. For example, if he is pointing to things in a book with his right hand, his left hand is off to the side, finger pointed, following the same motions as the right. Our OT is looking for some answers and is hoping neurology can give us some insight. This has limited Nate's fine motor skills and could become more cumbersome for him as he gets older if we can't break it. Our current plan of action is casting. Fortunately we just discovered air casts, which would be like a big arm floatie that we could take on and off and wouldn't be nearly as permanent as a cast.

Pediatrician
Ironically enough, this is the one I dread the most. Ryan and I decided on a delayed vaccination schedule for Nate early on and our ped hasn't been shy about voicing his displeasure. It seems like every time I go in we hear a lecture about the importance of getting vaccinated. Which I know. Nate is currently up to date on all his vaccines except for one- the MMR. Oh, how I dread this one. I don't know why, exactly, but I am terrified of him getting this shot. Ryan and I looked into trying to find it separately so we could space them out instead of doing the booster but had no luck. I haven't actually made this appointment yet. Still working up the courage, I guess.

We are committed to getting Nate the best care possible, even if it means we are seemingly running from appointment to appointment or specialist to specialist. It may not be fun (especially for him) but it's necessary and just a part of life for us now. We are blessed to have good health insurance and live near such great hospitals. It is such a relief to know my baby is in good hands!

So here's hoping for good news in February...

Ten Things

I haven't done a top ten in awhile so I thought I could catch everyone up with two top tens-one for Nate and one for myself (and Ryan).

Nate

10. He is starting to become a picky eater. One day he loves carrots, the next he is gagging and spitting them out.
9. He loves to make things spin or roll. He'd spin his stacking rings on the floor, or in his high chair or stander for hours if we'd let him!
8. He's quite the water baby and is starting to splash and get really active during water therapy.
7. He can find/point to/show you his hair, ears, nose, eyes, mouth, belly, arm, fingers, toes, feet, knee and back.
6. He is totally addicted to "lift the flap" books. And books in general. Not such a bad thing to be addicted to!
5. He made his first "painting" last week! To my surprise I came home to find that he had painted and played with play-doh during OT!



4.He'll wave bye-bye on occasion, usually only to his Auntie Gina on the webcam. I guess she's the chosen one.
3. I think he is starting to get his two year molars due to the constant drooling and sticking his fingers into the back of his mouth.
2. He has his own Christmas tree in his room (It's a Burnett tradition! And it's only 3ft tall, but makes tree number 3 in our house!)
1. HE SAID HIS FIRST WORD! He's said a few words before, da-da, ba-ba, bye-bye, but they were all prompted and usually said by us first. But this was totally his doing in his excitement. His PT, Toni, has a secret weapon-bubbles. Nathan LOVES bubbles. So she brought them out the other day and as soon as he saw them he started whining. When she blew them he got really excited and said "buh- ba!" It was soooooo cute! And I sware today I heard him say "eat". The switch has definately been turned on!

Us

10. A very recent development: Ryan is in negotiations about doing some detective work a few nights a week. This is definately an exciting avenue for him!
9. This weekend is our annual trip to Marshall Field's (okay, Macys)to eat lunch under the big tree. This started with Ryan's mom when she was a little girl and would take the train with her Grandmother. I've been going with Ryan and his family for over 10 years now. It's a wonderful tradition and we look forward to it every year!
8.Much to my dismay and for the first time in several years, our house was not decorated for Christmas the weekend after Thanksgiving (and at this very moment is STILL not decorated). See number 7 for explanation.
7. We got new carepting! It was much needed and something we have been talking about doing for a long time. Thank goodness for Empire and their quick installation! There's nothing like new carpeting to make you feel like a) you have a brand new house. And b) your house is the cleanest it has been years (even if that is an illusion).
6. We have recently realized that we have a SERIOUS problem with punctuality. Meaning, we have none. And it's totally out of control.
5. I have been trying my luck with coupons for grocery shopping and the whole ordeal has just been trying my patience. No good coupons for organic food, ever. I loathe grocery shopping and am considering quitting all together and just eating out 7 nights a week. How's that for healthy?
4. This is Ryan's first week on 10 hour shifts. I am looking forward to those first three days off in a row. We subscribe to Netflix and are going to try to make Sunday nights "movie nights". My one concern is getting back into cooking meals, even just for three nights a week (see number 5).
3. Today, Ryan deemed Thursday's "Pajama Thursday". You guessed it, Nathan was still in his jammies when I got home from work (and Ryan would have been too if he wasn't headed out the door for work). His reasoning is that Thursday is the only weekday that he they don't have to prepare for or go to therapy. A valid reason, I think. And also kind of cute!
2. There are babies all around us (or so it seems). My cousin Erin is due in January, a neighbor from my childhood just had her third baby today (Happy Birthday Baby Healy!), my friend and hair stylist is due next month, a friend I reunited with on Facebook and has taken some of Nathan's pictures is pregnant with twins, and I just made plans to go visit friends from college who recently had a baby boy. Whew! It's definately got me thinking...
1. The Christmas season is here! We are looking forward to celebrating Jesus' birthday and spending time with family and friends. Sometimes we forget what this time of year is truly about and get too wrapped up (literally. ha!) in the buying and consuming part of it. It is my hope that we will stay focused on the one amazing gift we have all been given!

Life as usual

The past month or so we have just been enjoying life as usual. Just hanging out, going about our daily routine. It wasn't until recently that I stopped and looked at our calendar for the next couple months and noticed that we have no specialist appointments. None. As in zero. Initally, I was relieved that we wouldn't have to be running around during this busy time of year. And then, the more I thought, the more I started asking myself questions. Shouldn't we be seeing someone? Shouldn't we, as parents, be doing something? Don't get me wrong, Nathan has therapy four times a week. Starting in December, it will be five. But out of all the specialists we see (neuro surgeon, neurologist, urologist, ophthamologist, gastro intestonal) shouldn't we be going to at least one? The answer is no. Nathan is progressing so well now and we have all areas under control. A trip to Shriner's for his hip and (?) scoliosis and a sleep study are on the horizon but not until the new year. For now it will be nice to just be. We'll keep working hard with his therapies (did you see the latest video?!?) and cross the specialist bridge in a couple of months.



There is, however, one small change to our lives as usual. Starting December 1st Ryan will be working 10 hour shifts. This comes with both positives and negatives. The positive is that he will be off for THREE WHOLE DAYS during the week! This is really exciting since our family time has been quite limited. He'll be home for dinner three nights out of the week-I guess I'll have to start cooking again! The negative is that he will now be working 4pm-2am Wednesday-Saturday. I'm a bit nervous about how little sleep he will be getting on the days I have to work, but overall we are very excited about this new schedule.

Hopefully I'll have lots of fun family posts in the very near future! My apologies for not blogging more recently. Time just seems to be getting away from me lately! Right now I am off to enjoy this doctor-less time with my very sweet little boy!

Up(dates) and downs

I thought I would give a quick update since I haven't lately. Last week, we took Nate in for a follow up MRI. As most of you know he had a shunt revision (okay, two)over the summer. He was showing no signs of shunt malfunction, but during a routine MRI his neuro sergeon found a syrinx, or build-up of fluid in his spine. We were hoping that with a revised shunt that this MRI would show that the syrinx had decreased in size. Unfortunately, it was unchanged. I was so worried that they were going to recommend surgery again to try and fix it, but thankfully they didn't. His doctor believes that going in and trying to get rid of the fluid would cause more harm than good. As long as he is progressing, isn't symptomatic and the syrinx doesn't grow in size, then we are just going to leave it alone. Ryan and I are both happy with this outcome.

As far as therapy goes, Nate is a trooper. He has therapy 4x a week and he seems to be benefiting greatly from it. Soon we are going to be adding speech therapy (at 17 months he isn't talking at all). We are still using the stander twice a day. Our PT was out for the past couple weeks, so Ryan and I were anxious to see what Nate would do when she tried to get him to push up to stand. We were all surprised to see that on his first try, HE USED HIS LEG MUSCLES TO TRY AND PUSH TO STAND!!! It was nothing like full-on standing without support but was a HUGE step in the right direction! We are so proud and excited for what is to come! If you feel led, please pray that Nathan continues to build muscle strength in his legs and learn to support himself. We know only time will tell, but through God all things are possible! Nathan is proof of that!

And just a brief vent about the downs. Really, it's just me. I am so proud of my baby and all that he has accomplished. Believe me, I wouldn't change a thing. But certain things just get me emotional. Like seeing him "upright" when he works with Toni, which gets me thinking about how tall he is, which leads to thinking of what it would be like to see him toddling around the house. A fellow mommy-blogger put it best. Usually when I am having a bad day, it has something to do with work or the house being out of order. These are things I can control. I shake off whatever is bothering me at work, straighten up the house and tomorrow is a new day. But I can't do that with Nathan's SB. It's out of my control (and in God's hands) and sometimes that is so hard. Most days I can tuck those feelings away, but sometimes I can't help but wear them on my sleeve. It's gotten a little harder now that Nate is at the "toddler" age where everyone (innocently) asks if he is walking yet. Sigh. Enough of my pity party. All he has to do is look at me with those big, blue eyes and his adorable smile and I forget that I was feeling down anyway. That makes all the bad days worth it!