Sunday, November 28, 2010

Up and Down

Kingsley is doing so much better today, as far as returning to his usual self. He smiled and laughed a bit while we were playing and he was awake for over an hour, looking all alert and adorable. His swelling has reduced quite a bit, which makes him look more like himself. His oxygen is off, but the tape has left red marks on his cheeks. Slowly but surely, every day I am getting my sweet baby boy back.

But, he has had a set back. The incision is leaking a lot and they think now that it's CSF. It's the lower part of his incision, which is on his neck, making it very hard to put pressure on it via a pressure wrap. He's on his back, but turns his head to the side a lot.  I've been told it's still okay for me to feed him and hold him, but now I'm trying to do it with him sitting up more instead of lying across my lap. So far, it's okay. The verdict is still out as far as whether or not he'll need to go back to the OR for more stitches or whether it will eventually close up on his own.  There is also a big fear of infection right now because the leak indicates an opening and also means the incision is wet. I'm on fever watch.

Right now he's sleeping so peacefully, it's hard to believe there is anything out of the ordinary happening at all.




I thought he was giving everyone dirty looks, until I realized his ng tube tape was pulling his lip up. He's less snarly looking now that I peeled it back.

What Happened

I can explain now what led Kingsley to having the surgery he just had and what the procedure actually entailed. He's in a ward room right now, so there are other parents there with their babies. I found myself telling his tale to another mama yesterday and halfway through describing his surgery I just stopped and started laughing. She was in there with her 6 month old daughter who has CP and just got a shunt put in. She just said, "Yeah. It's sort of crazy what our kids go through."  It's hard for someone who doesn't have a kid with these sorts of special needs or medical needs to fathom this sort of thing. It's hard for me to fathom most days. It's literally so far outside my realm of normal that it makes me laugh to think that this is actually happening to my chubby, happy, healthy little boy. Not that it's funny, just that I don't really know how else to digest it all.

Well, Kingsley wasn't doing so well with his leg functioning.  It wasn't just a matter of him not moving as much as expected, but more that he used to move more and now he moves less. We took him for an MRI to find out what might be going on. There was a large syrinx (like a cyst) right down his spinal column, top to bottom almost, putting pressure on his nerves. There was a larger part in the lumbar area (below your ribs) and a larger part in the thoracic area (mid back).  His NS thought that the syrinx had been caused by this other problem he has called Chiari Malformation II. That essentially means that part of his cerebellum is not tucked up inside his head like ours is, but instead hanging down in his spinal column.

The CMII is most often asymptomatic. Kingsley's is asymptomatic - he's never had trouble with it, it just is. However, it's filled up the space at the top of his spinal column and not allowed CSF (the fluid that moves around in your brain/spine) to move from his head to spine and thus caused pooling in the spine, aka the syrinx.

So, the goal of surgery was to create more space there that would allow fluid to move freely and hopefully, in time, allow the syrinx to drain it self or something and ease up on the nerves. To do that, they had to a procedure called a decompression. It has a fancier name - something like posterior fossa decompression, but I may be saying that wrong. If you find this stuff gross, stop reading.
.... okay, I warned you. They made an incision from the bump on the back of his head, down his neck. Then *lalalalalalacoveringmyearslalalalala* they took out part of his skull and part of two vertebrae (C1 and C2) and half of a third, I think (C3) and then put a patch (Jeff likes this part - says they took something from a cadaver's thigh, which may very well be true) of some sort of dura tissue stuff and put it over the place where the bones used to be, but not on as tight. That was sewn in, then everything else (muscle) sewn back up over top.  Ta-da. Big franken-line scar for Kingsley. :(   I hope I explained that all right. 

The MRI on Thursday night showed that there was indeed fluid now passing through around the cerebellum.  Not a ton, but it's there. He also has a lot of swelling happening right now. Hopefully, when the swelling goes down, there will be lots of room in there for the fluid to flow. In three or four months, he'll have another MRI to see how successful it was. Hopefully, between now and then we will see a return of some of the leg movement he used to have.

And that is why my baby is sad. Although I did get a smile out of him today! Just one, but so worth it. He's off the oxygen now and other than seepage from his incision (not CSF), he is doing fabulously well. He's very swollen all over from the drugs he's on, but that is going day by day.

Saturday, November 27, 2010

Day 3 Post Op

He's dopey still. Such a serious face. Nana and I tried to get a smile out of him, but all we got was a "Hm." When he's awake, he's more awake. Interested in playing a bit.  He's still really puffy, especially on his left side as you can see from his eyes. No more leaking though and his feet are a little less swollen. I'll get my smiles yet.

Friday, November 26, 2010

Pictures

Oblivious of what is to come.

Up waaaaay too early!

Snuggling with Daddy before going in

Our little panic waiting room 

After surgery

Saddest face ever. He mouth looked distorted from the breathing tube and he had red pressure sores on his forehead

His 'computers' as Rachel called them. He was well hooked up.

All his tubes and wires

Day after - looking a little better

Rachel is getting over a cold so she had to wear a mask when she visited

She thought she was the bees knee's. Was sure that everyone was going to think she was a doctor.

Can't go without popsicles! King had nice nurses.

Kept trying to tear off his mask, so he was switched to the prongs. Also better for his MRI to see how thing are going (they are going well).

This morning. Soooo puffy!! They say he'll get better over time, but he'll get pretty bloated from the meds before he'll get better. He's like a little stuffed sausage.

Free hands! No more IV's stuck in everywhere. Getting unhooked and ready to go up to the nursery wing, out of PCCU.

The top part of his incision. Bandages off and getting some air. It's about 4-5 inches long, I think.  There was a bit of leaking at the bottom, but they don't think it was CSF, just blood and yummy stuff like that.

New room up in the nursery wing. A lot less monitors and a lot louder. He's sharing a room with 3 other babies. Single rooms are reserved for all the respiratory kids in this time of year. Booooo.

Snuggled up in his new room.

Today has been eventful. I've hardly had a moment to sit down. Monitors going off, other babies screaming and waking him up, nurses and doctors and specialists coming to poke and unpoke and do everything else imaginable. We got our first hint of a smile when we came in this morning. So awesome to see. But he's been pretty grouchy since. I also got to hold him and breastfeed him this afternoon. He was in heaven.  Would not let me move a muscle or he'd just clench on with a definitive grunt of complaint. It's hard to see him so puffy and uncomfortable, but every day he's improving. He hates the nose prongs and is trying to pull them out now that his hands are free. 

I'm going to go hang out with him for a few more hours before going home. He still has his ng tube in to feed him when I'm not around. They didn't want to trouble him with bottles since he hates them. The feeding team was fighting to get him an actual bed so I could side-lie feed him and not have to jostle him, but no winning that fight yet.

Thursday, November 25, 2010

Surgery

Surgery went well yesterday. It took hours and hours and hours. He left us at 9:30am and we didn't see him again until after 5pm.  I guess it took over 2.5 hours to get his lines it. It is hard to see through all his little pudginess.

He has had some trouble with stridor, something that was never a problem before surgery. They think it's just a result of the breathing tube and edema, but it still makes me nervous. They say he's doing very well and this is all expected. I will breathe easy once he's out of here.

He was still asleep when we left him last night around 10pm, but when we got back just after 8am, he was starting to come around a bit. He started crying as soon as he saw me. I'm out in the waiting room right now because everytime he heard my voice, he'd start moaning. It's so hard to see him like this. They gave him some more morphine and he's dozing. I am fighting the urge to just crawl in the crib and snuggle up with him.  In time.

Tuesday, November 23, 2010

Tic Toc, Tic Toc...

Tomorrow is the day. Twelve hours from now, Kingsley will be in surgery.

Yesterday, he had a modified barium swallow, which of course he rocked. Today was his pre-admit appointment, where I got all of my questions answered. There's nothing left to do, but get 'er done.

Jeff tried to give him a mohawk tonight. He screamed and flailed and Jeff chickened out. Probably for the best. Can't trust a bald barber! Har har.

I don't know what else to say. I'm feeling pretty sick about the whole thing. I need to pack and go to bed.

Sunday, November 21, 2010

Countdown...

I had this odd thought this morning, that for us parents of kids with SB, waiting for a surgery is almost like waiting for our child to be drafted. We know that at some point, some time, it's going to happen. We don't know when - will it be in days, weeks, months, years - but we know with certainty that our child will eventually have to have surgery. In the meantime, we continue with our lives. Never completely comfortable making plans too far off in the futre, hesitant to make any decisions that can't be cancelled.  Always grateful in the back of our minds that it wasn't today. Every Holiday, celebration, vacation or special event feels twice as special because SB did not interrupt it from happening.  We hear about other kids getting the call before us and we feel those parents' anguish. We hug our kids a bit tighter. The dread creeps up. Once they head into the hospital, you just don't know when they'll come out, what will change, how they will be effected. Could be a quick shunt revision, could be a tethered cord release, could be one of the other side effects of SB like an ortho or uro procedure.  The only thing you know for sure is that one day it will be your child.

What a life we lead. And yet, when you look at their little faces, it's worth it.

Nevertheless, I feel like there is some big ominous ticking clock in our house. Or maybe it's just in my mind. Everything is falling into place and leading to a big scary unknown.

We got the results of the MRI from Friday night - all clear. Nothing wrong with the shunt, ventricles look great. I never thought I'd be so disappointed to hear that! King's usual NS has responded (while on vacation abroad) and said to go ahead with the surgery. No one seems to want to wait, which makes me nervous.

We had our date night last night (Harry Potter was even better than I could've imagined!!) and put up the Christmas tree because it occurred to me that it could be mid-December before Kingsley is home again and I didn't want him to miss a single First Christmas experience. I was going to see about tracking down Santa Claus for pictures, but didn't get my act together in time today. That will have to wait!


I'm hoping to get a pre-admit appointment tomorrow. I have so many questions about this hospital stay.  It's just so different from last time - he's older, he sleeps less. How in the world is he going to be fed?  How long can I stay? Where will he even be after his surgery? Will I be able to hold him and play with him? 

I'm also thinking about haircuts for him. They'll have to shave the back of his head, so I'm thinking we should do something fun to balance it out. I was thinking mohawk, but my mom is horrified. Meh, we already have the Christmas pictures! ;)  Maybe just a crewcut then. I want to do something though. A big ol' shaved spot just seems harsh.

Friday, November 19, 2010

Decompression

We met with the NS today and Kinglsey is likely going to have the decompression surgery this Wednesday.

We saw the pictures from the MRI today and they were pretty amazing. I had done some reading on syrinx's last night, so I knew what I was looking at as soon as she showed it to us. It's huge. It goes down his whole spine. I said it was like a bubble, but it's not really. The spine shows up as a long dark tube and within that was a strip of white, almost the whole way down. That was the syrinx. It was quite alarming to see the widest parts at not only his lumbar, but also a wide part up by his thoracic area.

We could also see the Chiari - the back of his brain pulled down, just like the pictures of it in books and online. Insane when you see it as YOUR child. It went down to C3, which was really hard for me to see. When the brain is pulled down to C4 or below, there is a high likelihood of serious complications.  That's just too close.

This wasn't our usual NS, but she was fantastic at explaining everything that she saw and thought. She explained the surgery to Jeff in more detail than I cared to hear. If I wasn't so horrified, I would've laughed. Jeff doesn't always attend appointments with Kingsley and I because he's busy at work and I'm pretty good at remembering everything. But when he does attend, he asks the most bizarre things. I give the doctors a lot of credit - they rarely act as though it's something they've never heard before. I still tease him about asking King's NS about 'sprinkling some stem cells' in his defect before she closed it up.  Ah, whatever makes him feel like he has enough information ;)

The take home point of the day is that we are lucky that we've caught this when we did. It should have been caught earlier, which is something I will be very mad about for awhile, I think. If left alone, things could get really bad for Kingsley. This NS is going to email our usual NS to get her opinion (she's on vacation). We went for a quick follow up email tonight (poor guy, he did awesome. screamed for the full 5 minutes he was in) to check that his shunt is okay. If for some reason, his shunt is malfunctioning, that would actually be fabulous because then we could do a shunt revision instead - a much simpler surgery. It's not at all likely though. On Monday, Kingsley will have a modified barium swallow to get a baseline for his feeding and swallowing. 

We have four days until our life is flipped upside down again. I'm trying to talk to Rachel about what is going on. We're setting up playdates and grandparents on nanny-duty.  I am worried about how Cordelia will do, since she's too young to really understand where Kingsley and I will be and when we're coming back. I'm going to try and spend some girl-time with them this weekend.  Jeff and I have our big Harry Potter date night still on for tomorrow night. It doesn't seem like enough time, and yet I want this surgery to happen right away.

Thursday, November 18, 2010

Answers

Kingsley had an MRI today. Have I ever mentioned before what a rockstar my son is? Because I really feel the need to say it again. He is amazing. He had a rough night, lots of trouble getting to sleep. It's like he knew today was going to be a long day and was as worried as I was! He was up at 6:30am and was quite pissed off that I wouldn't feed him. Kingsley was not liking Mommy very much at all.

It took two hours from arriving at the hospital until they finally took him in for the MRI. In that time, he was so patient. He must have been so tired and so hungry, but he smiled at all the old folks waiting for their CT scans and MRI's and snuggled in my arms and just hung onto my neck. Not a complaint from him.

We got him changed into his gown and then it was time for the mask. This is when he got angry. It probably only took about 10-15 seconds for him to breathe in enough to fall asleep, but it was a looooong 10-15 seconds for me (and likely him!).  Horrible. Jeff and I walked out of there and I almost cried in the hallway. I was so filled with guilt at putting him through this. I had this dreadful feeling that they were going to find absolutely no explanation for his decrease/lack of leg functioning. I was sure they were going to tell me it just was what it was and I would have to stop moaning about it and just accept it.

The guilt stuck with me all through the 1 hour wait for him to get the MRI and then while he was in recovery. He came out of it wonderfully. I could hear him screaming down the hall after he woke up. Turns out, the nurse was trying to give him a bottle. :)  LOL! Good luck with that! We were sent back up to PMDU where he passed all his tests and we were sent home.  He was so happy, so bright and cheerful, just like none of it had happened. His resilience amazes me.

We were home only a couple of hours when his neurosurgery nurse called.  Kingsley's neurosurgeon is on vacation for a couple of weeks, so the other paeds NS and she had gone over the scans.  They want Kingsley to come in tomorrow morning. They need to speak to us and the NS wants to assess Kingsley herself.

Because now we have our answers.

I don't quite understand all of it and I am not certain what is going to happen next. What they saw on the scan was like a cyst on Kingsley's spine - a syrinx. It's a fluid filled bubble, like having hydrocephalus of the spine almost.  I think that's not entirely abnormal, but I guess it's a fairly good size - it covers a few vertebrae. It's probably putting pressure on his spinal cord and restricting nerve functioning. That's likely why he's lost some functioning in his legs. 

I'm not 100% sure how it's all related at this point and but the syrinx has something to do with Chiari.  Arnold Chiari Malformation II is one of Kingsley's other diagnoses. Most people with SB also have it, but the majority of the time it's asymptomatic. In a nutshell, it has to do with the brain being pulled down into the spinal column. Because Kingsley has never shown any symptoms of Chiari, it hasn't been a concern.  Big red flags would be things like stridor, sucking/swallowing problems, apnea, headaches, vomitting, and failure to thrive. None of that describes my happy, chubby, milk-loving baby.  So, it was quite a shock to hear that the Chiari is pretty severe and likely the reason for all of this. Chiari can cause blockage of the flow of cerebrospinal fluid (CSF) which for some reason causes a syrinx, if I'm understanding correctly.

The solution that will likely come of all of this is another surgery called a decompression.  I have heard of it and know it's something that happens in the SB world, but like all things, I treated it as a need-to-know sort of topic that I clearly did not need to haunt myself with. Well, now I need to know. And the more I find out, the more I wish I had never heard of it. It's another brain/spine surgery that would leave King with a big long scar on the back of his head/neck. That's about all you probably want to know. I've been advised to stop reading and just listen to what the doctor says tomorrow, and judging by the horrifying summary I just read in Living with Spina Bifida, I think that's for the best.

The idea is that a decompression would help relieve some of the pressure the syrinx is putting on the spine by restoring flow of the CSF.  If that doesn't work, they would then try to drain the syrinx. If that doesn't work, they could put a shunt (like the one in his head) in the syrinx to make it smaller. Those would be separate surgeries though, not something that would be done at once and hopefully, we will not have to go there at all. There is a decent chance that a decompression surgery will help restore some of the lost functioning.

I feel like this is all fake. I can't believe that they're going to actually tell us tomorrow that he's going to need this surgery. Two more weeks in the hospital. It seems surreal.

And then there is the possibility of... walking. Standing. I'm afraid to even hope for it.

At this point, all I want for Christmas is my boy home with us. Healthy. Happy.

Wednesday, November 17, 2010

DYNAMIC!

Just a quick update to let you all know that Kingsley's urodynamic study went amazingly well this morning! It was scheduled for naptime, but there was so much going on and such lovely ladies entertaining him at the start that he didn't seem to be missing it much. He got all tapped in and monitors stuck on, no problem. The test involves putting a probe down yonder and a few sticky monitor things on his hips/thighs to measure... what is it? Flexion? Basically, to see if he's clenching and pushing I think?  Anyway, then a catheter with sensors of some kind. They empty him out, then slowly fill him up to see what happens to his bladder, taking x-rays throughout the procedure.

I'm not sure what went wrong, but after he was emptied, there was a lot of mumbling about something not working and numbers not being what they should be. About that time, Kingsley decided he was about done with the whole thing. He screamed and cried for the next looooong half hour. Poor kid, his eyes were so red and he just kept looking at me, begging me to pick him up and lull him off to dream world. Not so much fun. But, then things on the technical end started working, his bladder started filling and after a bit, Kingsley seemed to realize crying was futile. Either that, or he was so exhausted that he didn't have the energy to keep it up. He was quiet for the end of his test and was right cheerful while we waited to speak to his urologist.

The results were fantastic. As good as they could possibly be, short of telling us he didn't have a neurogenic bladder anymore that is. ;)  No reflux at all (urine sneaking back up to the kidney's is a very bad thing that we will always have to watch out for), bladder was relaxed and easily holding more than a kid his age usually would hold - good sign for staying dry between cath'ing later on, or 'social continence' as it's called; fancy speak for Kingsley getting to wear underpants. The med he's on is doing what it should be doing.  He's also allowed to be weaned off the prophylaxis antibiotic that he's on since he hasn't had any UTI issues. If he gets one, we'll treat it and put him back on it. I feel like there is suddenly a lot of pressure on my hand washing skills!

That's it! We'll see the uro again in clinic in 4-6 months as long as there aren't any problems. WEEE!!! Go Kingsley! One big test down, one to go! :)

Tuesday, November 16, 2010

Too Much! Too Much!!

There is a Mommy Meltdown in my future.

This week went from slow and mundane, to insane in one phone call yesterday. We got the MRI date - Thursday! As in, 2 days from today.  I guess when you're a neurosurgeon, you get an MRI when you want to get an MRI! Today Kingsley had a pre-admit appointment because he has to be sedated. Two hours sitting around in an examination room trying to entertain a 10 month old is not so much fun, but he passed his tests and he'll be getting his MRI in 2 days.

That is, if he can survive the night. He isn't allowed to eat or drink after 2:30am, which is about 3 feedings for Kingsley and 5 hours of sleep that will be replaced with screaming and crying and painful "MOMMY, why are you denying me???" daggers shot in my bleary eyed direction. Oh, my poor boy.

This may seem great, except I feel really overwhelmed. Discussing drug risks, procedures, outcomes and expectations... it's all so reminiscent of a year ago. This is his first 'procedure' since his shunt, the first time he's had anything other than the usual checks and screens. It's nervewracking!

And.  Tomorrow is Kingsley's first urodynamics study. That's fancy speak for a study of how his bladder functions. Another big 'procedure'.  OK, so it's pretty routine in the SB world, but it's King's first time so it seems bigger than it is.  It's during his morning nap time, involves catheters and him lying there with monitors and probes and stuff. I just don't see it going well, but I have my fingers crossed. Kingsley does have a tendency to amaze me. ;)

I am looking forward to getting through these two days and hearing the results. I have no idea what to expect, but any information is better than wondering and waiting, right?

I'm not, however, worried about how I'll spend my time waiting for the results to come in, in case you were worried about that. We have our VIP tickets for the Saturday night show. I. Am. So. Ready. :)

Friday, November 12, 2010

We've Got Mail!

Guess what we got in the mail today!!


A couple of SB families created these shirts for (American) SB Awareness month in October and ours finally arrived! The smallest size they were making was 2, so unfortunately Kingsley is the only one without! I am planning on doing something for our SB Awareness month in June, so I bought us these to wear.


We likey.

Thanks Kari and Leigh and Andy!!

Wednesday, November 10, 2010

Why?

Some days, it feels like this whole journey can be summed up by those three little letters: WHY.

Why does Kingsley have SB? Why is his movement regressing? Why isn't he moving as much as we expected? Why. Why. Why.

We had another neurosurgery appointment this morning. Short and simple - she is going to get him an MRI. She doesn't know why he has regressed. Maybe a tethered cord, though as we all recite, that doesn't make much sense at this age. Who knows? Do an MRI and see. Maybe it just is the way it is.

I know I wasn't going to get any answers today, but I'm still a little bummed. My mind is going to all these horrible reasons and explanations. Google itself could not produce worse theories than my own brain right now! I was just hoping maybe his neurosurgeon would have some potential answers. Something to look for, to focus on. Nothing. More waiting.

So, now I am watching Maury Povich, because somehow the knowledge that I do not need a lie detector test to discover whether or not Jeff is sleeping with my sister makes me feel better. Maybe I am glass-half-full afterall. ;)

Saturday, November 6, 2010

Oh, Happy Day

I found Christmas outfits! YAY! This brings me so much joy, you can't even imagine. I dragged my bestest shopping buddy out (Rachel) and hit up every kids store in the mall. I finally settled on red sweater-jumpers for the girls and a red sweater with black cords for Kingsley.  I even bought him mini black loafers, which are ridiculous, but the girls both have Mary Janes, so he couldn't exactly where his blue lizard Robeez. I just have to double check on shirts for under the girls dresses and we're ready for Friday!


I also took all three of the kids to a Bobs & Lolo concert at the last minute this morning. I was worried about how King would do, since he generally doesn't dig singing. Or crowds. Or noise. Turns out, he loves the ladies, so it was all good. I had him in the mei tai to start, but he was craning his neck so much, I took him out and just sat him on my lap. Rachel danced up a storm and Cordelia sat beside me like she was in shock. I think she was. Up until they walked on stage, she was convinced that Bobs was me. Given my singing voice is *ahem* not that great, I think the comparison is an insult to Bobs.

Gold star day. ;)

Thursday, November 4, 2010

Check, Check, Double Check...

Kingsley had his follow up, follow up hearing test today. He passed. :)  He originally failed the infant hearing screen in the hospital because they insisted on doing the one for high-risk infants which involved putting a probe behind his ear, where his shunt is. When the tester did the normal way (in the ear), he passed but she wasn't allowed to include those results, so he went for a follow up a few months back and passed then again. This should be the last hearing test. They're pretty thurough, but the kid can hear already!


Today I also got the report from our last clinic appointment in the mail. Man, it is odd reading about your own child in clinical terms. I read the summary and then looked at Kingsley and it just seemed bizarre that my little angel is the kid in the report. But there it is.

The highlight of the report was them saying that developmentally Kingsley is only 1-2 months behind. Woo-hoo! I was thinking he was further behind, but I guess that's comparing him to Rachel and Cordelia who put the Rock in Rockstar.  And considering the start Kingsley had and how much harder he has to work, he's doing fantastically!! 

The dimlight of the report was the fact that both the developmental paediatrician and the PT expressed concern over his decrease in motion in his legs. They tacked on a #5 on his list of diagnoses: bilateral lower extremity weakness. Boo for number 5! They were so concerned that they are ordering an MRI to rule out other spinal pathology. What in the world does that mean??  And why on earth did they not mention their concerns when I was sitting in front of them?  Sending me a report with something that big, 7 weeks later, seems to be the wrong way to go about it.


I'm also annoyed because next week we have a neurosurgeon consult to discuss this exact thing and to get the MRI and it would've been nice to know before I pushed for these appointments that the process was already happening.

I could also just be projecting my anxiety over the fact that this really isn't all in my head and that he really  has lost functioning and that that really is a problem that is concerning to others.

On a happier note, Kingsley got his second tooth! And despite that, he is still the happiest little guy ever. He's congested all the time and I can't figure out if it's a cold or just from his teeth. Most importantly, he has not yet bit me. Yay!

And I still have not found Christmas outfits. One week until picture day.

Monday, November 1, 2010

OK, so I've been so busy lately and haven't blogged in nearly two weeks!

And I'm lying, I haven't been that busy, just totally lazy!

Kingsley's doing well. He got his first tooth! It just broke through the bottom and it's partner is taking it's sweet old time coming in. He doesn't seem that bothered by it, but it makes him congested.  Not a big deal, except when King is congested, he gags a lot. And when Kingsley gags a lot, he pukes. And when Kingsley pukes, Jeff freaks out about his shunt. There's been a lot of freaking out here lately. He's totally fine though, don't worry. I'm usually there for the pukey so I see the whole process, otherwise I might worry as well.

 

In therapy news, we've finished with one of the playgroups we were going to, which was sad for Cordelia! King and I are now going to swimming lessons, which he doesn't enjoy entirely. It's during his nap time. I have heard about other SB babies doing therapy in the pool, but I have no idea what I'm supposed to be doing with him! It's essentially a mom and babies swimming lesson, which is a little odd to be a part of after teaching those classes for so long, and even in the rehab pool that I used to guard ages ago.  One thing is for sure, Kingsley is quite the little stud in a bathing suit!

After the nice long lull in appointments, we've got a bunch lined up. He's finally having his urodynamics done (translation: big urology appointment that is supposed to tell us lots of stuff about King's plumbing), as well as his final hearing test (he failed the one in the hospital when he was a newborn because the little tester thing was put on his new shunt. brilliant) and of course the follow-up with the neurosurgeon regarding his decrease in leg functioning. I'm so eager for more information, but as always, feel like I'm bracing myself subconciously for some bad news of some kind. We will see!

Last thing we've been dealing with is Kingsley's lack of interest in solid food of any kind. He's actually doing better the past week and is opening his mouth voluntarily when the spoon is presented. Only smooth purees, but I'm starting to try thickening things a bit. His OT videotaped me feeding him and is taking the video back to the feeding team to see if they think there might be a problem. I can't WAIT for him to eat. After 9.5 months, I'm looking forward to being able to be away from him for more than two hours at a time. I miss yoga classes.  I miss matinees. Soon enough, right??

In the midst of all of this, we had Halloween. King didn't go trick or treating, but he did have a few parties to go to. The girls went and had a FABULOUS time. At first, Cordelia didn't seem to see the point in dressing up and resisted like you wouldn't believe, but once she realized there was candy involved we couldn't get her out of her witch costume. They both asked if they could go again today and resorted to playing trick or treat in the playroom. Sugar junkies, just like their mama!

And now that we're finally done with all this 'autumn fun' business, we can move onto better things.... like CHRISTMAS!!!!  I have started shopping already. I'm jumping the gun a bit, but I bought Santa is making all three kids plasma cars this year. I love that Kinger will be able to ride and play with his sisters. One of the PT's I was talking to said they could modify his as much as he'd need by adding a ridge or a strap or something. You know, when he can sit up on his own and stuff. ;)

What is haunting me the most right now is that I have a mere 11 days until the kids Christmas pictures and I have yet to find coordinating outfits. Oh. Em. Gee. No pressure.
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