Sunday funday

We took Elijah to the Children's Museum downtown today for the first time and it was awesome! What a cool cool place. We got there right when it opened, so we had the entire ant tunnel floor to ourselves. Dan and I crawled through the tunnels on our hands and knees with Elijah, and we all totally loved it. Our knees started to hurt after a while so we moved onto other things.


Not so sure what to think of the giant ant.

We attempted story time at the museum. I really had no idea how Elijah would do with this. He seemed to want to crawl around and through the kids and just take everything (but the story) in. Then he spotted two huge doors to the right of us. I saw where his gaze was leading and gave Dan the we-have-to-leave-the-room-now look. We are constantly having to divert his attention to other things when he spots doors, cupboards, anything that he can open and close repeatedly. I can just see Elijah in kindergarten, avoiding games and kids and color time because he wants to be along the wall, playing with doors of some sort. I really hope this obsession fades.


Turtle Dan.


This is a door that was painted on a wall (there were a few of these), and Elijah could not understand why he couldn't get it to open.


The water centers were a ton of fun. This was one of his favorite rooms.


He stood there by himself for quite a while.

The rash is better today, thankfully. I'm worried that Elijah has an allergy to Tylenol since last night was the first night I haven't given it to him in over a week. I guess we'll find out the next time he needs it. I'm just glad the bumps seem to be getting better. We were able to spend some time outside this afternoon since it has cooled off, yay!


Using sidewalk chalk for the first time!

I must go grab my dirty boy and give him his nightly sponge bath. I can't wait to be able to throw him in the tub again. He gets his stitches out tomorrow, so hopefully after that we will be cleared for normal baths.


Pretty art, Elijah!


Dan balanced out all of my "hearts and flowers" chalk art with this lovely drawing. I know, weird.

Inside

Washing our hands at the kitchen sink. This is what Elijah does when I ask him to show me his happy face. He grins hugely and points to his smile.

So much for taking a day trip today. We hardly even left our house! This morning it was rainy/cloudy/windy, so Elijah and I hung out at home. The sun came out this afternoon so we went to the park for a bit. About ten minutes into swinging I noticed that Elijah's welty-looking rash was getting worse before my eyes. Arrgghhh! So we headed back home, out of the heat.


Washing my hands (which have just been dunked in the toilet), Mommy!

Elijah just went to bed and I have a date with my book and maybe the tv for a bit after that. Life is so exhausting! :) I'll have to think of an indoor adventure tomorrow so we can avoid making the rash even worse and also so we can get out of this house.


This is what I found in the bathroom tonight. When I came back from setting the camera down, he had his arms dangling over the side of the toilet and was splish-splashing in the water. Fun!

Giving up

I'm posting the same photo as yesterday because of its total cuteness.



I've decided to give up wondering if our little boy will catch a break because it is becoming evident that it's not going to happen. Elijah woke up this morning with a new set of all-over-his-entire-body rashes. Actually, they look like welts. They look awful. They are even on his face and ears. We also noticed that the stitches around his incision are red and appear irritated. I can't wait to get those out. Monday morning!

Dan called The Voice to see if he had insight about the mystery welts. He said everything that was in his body while in the hospital should already be out, so he had no guesses. As long as the rashes don't appear to be bothering him (they don't, thank goodness), he said not to worry too much. We cannot for the life of us figure out what could possibly be causing this! It is maddening. I love what my friend Pam called Elijah today: Bumpy Monkey. How perfect!

I'm going to do my best to accept the fact that it will literally be one thing after another with our Elijah. Maybe then I'll at least feel some peace about everything he (and we) must endure. Like.. Oh good, I'm glad it's strep throat because Human Werewolf Syndrome could have been next! Phew!

Changing the subject completely, Elijah's speech has been very encouraging lately. The other day he mastered the word CAKE. He likes to try saying a word and then I will say it, and we repeat this until he has it somewhat right. It goes like this:

E: [pointing to picture of a cake] Uck
Me: Cake
E: Ake
Me: Cake
E: Ock
Me: Cake
E: Guck
Me: Cake
E: Kuck
Me: Cake
E: Cake
Me: Cake!
E: Cake!

He also started saying CAR this week, and doing the sign for it as well (which is so super cute, by the way). Last night he was saying CARD, which actually comes out sounding like a bad word, so we will have to work on this one some more. His little mind is a sponge. He adores his letter books and he would sit with us and go through them a million times a day if we had the time. He has even sporadically been calling me MAMA. We'll get there! We are constantly so proud of our little man.

I really really wanted to get away this weekend. After a few days of hospital life and then after feeling like an emotional wreck during this aftermath, I want out of the city very badly. Dan will be working all weekend, so I was thinking I would pack up our things and drive somewhere, anywhere, with my sidekick for a night. Now with this new rash development, I suppose I should put that on hold. Who knows, though, maybe he will wake up tomorrow morning rash-free and the two of us will be off to California! Or maybe not quite that far.

Ok, I'm going to practice my giving-up skills now.. Oh goody, Elijah has an awful rash all over his body! That's great because Trichotillomania could have been waiting for him.

Dr. Moga wouldn't like for Elijah to have this disease, so I guess I will embrace you, Rashy!

Mystery bumps

We found a bunch of red bumps all over Elijah's body earlier today, so Dan brought him into the doctor to find out that he is having an allergic reaction to something. We have no idea what it could be. Maybe a lingering medication from his hospital stay? Who knows. We gave him a dose of Benadryl to hopefully help with it tonight.



Even though it was a little bit warm, we played outside for a while tonight. We made an attempt at eating some ice cream in honor of our angel friend Kate, but Elijah was not interested. I guess he is back to refusing entry to anything that doesn't look worthy of going inside his mouth.



Elijah has a new love. Thomas the Train. He makes googly eyes at the Thomas DVD case all day long. He's in love!



That's about all we know today. Thanks for checking in!

As good as our little boy is feeling, I'm beginning to wonder if I imagined surgery?

No new pics again today, so you get one that was taken exactly two years ago..



Our spunky little boy is doing awesome! I never thought he would be doing this well six days after surgery. We had canceled all of his therapies this week in anticipation of him being sore and sluggish or even still in the hospital, but now I wish we wouldn't have. Oh well.

We have noticed that Elijah's appetite has increased a lot since surgery. It has to be a coincidence because I cannot think of any reason why surgery would have made him so hungry. He has always been a good eater overall, with chunks of time here and there where he wouldn't eat very well. And he has always been very selective about what he puts in his mouth. If he doesn't like the way something looks, he absolutely will not allow entry. Yesterday he let me put a fruit snack in his mouth and he ate it! He would not have done that before. Today he was sitting on the floor with a box of crackers in his lap, munching on cracker after cracker. He would not have done that before. Whatever the reason for the increased appetite, yay!

Dr. J, Elijah's neurologist, called today to let us know that the results from his bloodwork that checked for muscle disorders came back perfect! Check off another worry.

Next on our list is to get Elijah scheduled for a hearing test and to get evaluated by an ENT for his nasal speech. Crossing things off the list feels wonderful!

Perspective

I continue to feel like a basketcase today. This always happens. I take a crazy emotional roller coaster ride for a solid week following every surgery. I sat at my desk at work today constantly suppressing much-needed cry sessions. I heard someone gabbing on and on about the drama surrounding last night's Jon and Kate episode (I proudly know nothing about this show) and then I thought of all of the sick babies lying in hospital beds right now. Spending time in a children's hospital has a way of changing a person's perspective. Big time. When you see rows and rows of babies struggling to hold onto life, the little things no longer matter. TV shows, gossip, material possessions, none of that really matters.

I don't have any new pics, so I will choose another random set of numbers and grab an oldie from my archives. I picked my two favorite numbers, 23 and 11, which revealed this photo that was taken at my dad and stepmom's house in North Carolina in December of 2007..



Elijah is doing amazingly well. Like I said yesterday, you would never know what he has recently been through just by looking at him. He is tearing all over the place, being as spunky and funny as ever. He does this thing where he puts random things on his head (crackers, books, cars, whatever is in his hands) and yells, "HAT!" It makes us laugh, so he does it a lot. Today he was putting his cookie on his head and doing this. Then he decided that his cup of milk needed a hat, too, so he balanced the cookie on the cup and said, "HAT!" I love my silly kid.

More random numbers (9 and 18) revealed this photo, taken in October 2008 in the back of our friends Katie and Drew's (parked) truck..



I haven't mentioned that the hearing test that we had planned on having done during surgery never ended up happening. The surgery went so quickly that there wouldn't have been time for it anyway. We did get the immunology and allergy results read to us very quickly in a manner in which I did not fully understand, so I will follow up with Elijah's pediatrician about these. It was something like: one of his numbers came back low which typically indicates a susceptibility to allergies, but that he doesn't currently have allergies. Details to come on that..

Oh, and do you know what is crazy? We don't even do our neurosurgery follow-ups with Elijah's neurosurgeon. That guy is literally just involved in the surgeries. We follow up with The Voice in 3-6 months. Another crazy thing is that a repaired tethered spinal cord can re-tether. That is something to definitely pray against.

It is super hot and humid out today, so we are enjoying an evening inside. Please pray for continued good recovery for our precious little boy, and also for healing, health and peace for all of the babies/families at Children's Hospital right now.

BYE BYE (Elijah's favorite thing to say to doctors and nurses)

Did you say HOME?!

We made it home around noon today. It is so unbelievably nice to be out of the hospital. We ate lunch and took naps after getting home. I had been planning on going into work for at least a little bit today but I'm glad I didn't. I spent a lot of my awake time this afternoon crying and experiencing many mixed emotions that I'm sure my coworkers wouldn't enjoy experiencing with me.


Our quaint little 6th floor (side of the) room.

I was reminded how emotional I get after we get home from a surgery and hospital stay. I keep looking at Elijah, who you would never in a million years know just had major surgery, with total disbelief. His strength never stops amazing me. I keep thinking of the moments in the past week when I felt like it couldn't possibly get any worse and when I felt so overwhelmed and exhausted all I wanted to do was scream and cry. I keep thinking of all of the sick children in that hospital and I feel sadness that so many families have to suffer the hardship of having a sick child. I keep thinking about how different things are now. They always are. The three of us have endured yet another battle together, and we are even closer than we were before. I feel relieved that we have yet another challenge behind us. I feel overwhelmed about all of the love and prayers that have been sent our way in the past few days. As I look at yet another scar on my little boy's body, I feel sadness that he has had to endure so much. I feel exhausted.


Watching some tv before discharge.

I experienced some of my lowest moments during this hospital experience. This is something I didn't expect at all. Going into it, Dan and I figured that since it wasn't a heart surgery that it would be a piece of cake. Overall, it wasn't as intense as his heart surgery recoveries have been, but it definitely was no piece of cake. I am so happy to be done with this particular adventure. Onto other things!


Elijah is totally in love with the trucks that were sent to him at the hospital right before we left. Karen, the care package was so super thoughtful and sweet. Thank you soo much! Honestly, Elijah hasn't put the trucks down since he saw them. As I was getting them out of the packaging, he impatiently said, "GUCK GUCK GUCK" (translated: truck truck truck), until they were in his eager hands. The treats are great, too. Thank you so much!! We had a few other little presents/cards waiting for us in the mail that made me shed a few thankful tears.

Dan is heading to softball (no idea how he has energy for this), Elijah is heading to bed and I am heading upstairs to take a much-needed bath. I can't remember the last time I showered, so it will feel nice not to smell like dirty feet anymore.

Again, thank you to all of you for all of your prayers and love and for checking in on our sweet boy. We are so very thankful for everything.

Relaxing was so yesterday

We had another roommate-less night, sleeping as good as is possible in a hospital. Elijah's nurse removed his catheter right away when he woke up this morning and he has been cruising around the room ever since. It makes me squeamish watching him knowing that he just had a pretty big surgery, but it doesn't seem to bother him one bit. His incision looks really good and he hasn't had any tylenol since yesterday at 4:00 p.m. These are both really good things.

The big thing was to see if his bladder would release urine on its own after having the catheter removed. He just gave us a big wet diaper, so all is well! Thank you for the pee prayers! We are all packed up and are waiting for The Voice to come in to sign our discharge papers, as Elijah crawls around the room checking out every single drawer and door within his reach. Have I ever mentioned how much he loves doors, drawers and enclosed places? The above photos are evidence.

We are very anxious to get home. Hopefully The Voice isn't too busy this morning and he is able to stop by soon. Thank you all so so very much for all of the diligent praying you have done for our little boy. It means more to us than you will ever know.

Elijah has crawled over to me and wants to type you a quick thank you message of his own:

cfer 
,lluikk=--[][-'[[0;u7b7yyffbkkhfgszjhjhkyyynujhjctstufgfjhjnm
 , =

Father's Day!

(I have to cheat the system a bit in order to get posts up while in the hospital, and one of the things I am unable to do is put captions under my photos. The top photo I took just a few minutes ago as Elijah was giving Dan a Father's Day kiss. The second pic is from when we were still in the PICU. It's a different perspective of the Amazing Hair. I apologize for the diaper exposure in the third pic, but I wanted to show you all that Elijah has been practicing yoga! The last photo is a happy-faced, video-watching little star, who we love so very very much.)

Happy Father's Day to my wonderful husband, who is also a wonderful daddy! Also, to both of our dads and to Dan's grandpa as well. And of course to the rest of the awesome fathers out there.

It's obviously not ideal to spend Father's Day in the hospital, but I can think of much worse things to endure (hopefully Dan feels the same way). Elijah and I have been trying to make it as special as is possible for him. We have a gift we'll be giving to him later, and I have been trying to get him to nap whenever possible.

I can easily say that we had the best night in the hospital last night that we have ever had. We bartered with the nurses/doctors and agreed upon only one middle-of-the-night vitals check (as opposed to the usual three or four) that none of us even woke up for. We didn't get another roommate, so we had the room all to ourselves. With Dan in his chair-sleeper on the north end of the room and me in mine on the south end and Elijah in between us, we all slept solidly until 6:00 this morning. We are hoping for more of the same tonight.

We have had a good morning. Elijah is hardly on any pain medication and doesn't appear to be hurting at all. He does this with heart surgeries, too. This kid endures pain well, or just doesn't experience much of it. We were able to pick him up for a bit and walk around the hall (avoiding the swine flu end) and gaze at the fishies and Elijah took a short nap on Mama's lap afterwards (ahhh, so nice to hold my boy).

The word on the street is that his catheter will come out in the morning and if he can urinate on his own after that, we will be sent home! Please pray with us for pee! This is awesome news. The doctor on the floor stopped by and said Elijah is doing amazingly well. He gave him an "A+!" The Voice said basically the same thing. We are so proud of our little man.

Thank you so much for checking in on us! We appreciate the love and prayers so very much. xo

Day three

This pic was taken shortly after surgery. I didn't expect to be able to hold him so soon after surgery!

We did not get another roommate tonight, thankfully. We put Elijah to sleep at his usual bedtime and Dan and I watched a movie on the other side of the curtain. Elijah had a really good day today. He got restless occasionally, as any 2-year-old would while lying in a hospital prison, but he really did well.

He will get his catheter removed on Monday to see how his bladder tolerates being catheter-less. Best case scenario, we could be heading home by Tuesday. This means a lot more Veggie Tales and cartwheels to keep our little boy preoccupied.

Dan and I just watched a beautiful sunset beyond the city. The view from our room is amazing! I guess the hospital does bring some good things? We are heading to bed in hopes of being somewhat rested for another day in the hospital..

The 6th floor

At 10:00 last night we were finally moved out of the PICU and to 6th floor (way too late to be transfered, in my opinion). We had never been to the sixth floor before, so the past 16 hours have been a unique experience for us. Up until a few hours ago we were sharing a room with another child recovering from surgery. Whoever thought that sharing rooms in a Children's Hospital was a good idea must not have children of their own. It is an awful idea! We had a very sleepless, anxious night. The little boy we shared a room with was very sick. He vomited all through the night, in between watching tv with the light next to his bed shining brightly and moaning from the pain he was experiencing. I wasn't upset at all with the poor kid who was obviously suffering. I felt horrible for him. He deserved his own room. Especially since Elijah wakes up naturally at 5:30 every morning, talking very loudly.

By the early morning hours, the nurses and doctors were discovering that this other little boy was really really sick. They got him transferred down to the PICU where he could be better cared for, so since about 10:00 we have had the room to ourselves and life has been much more tolerable (and hopefully life for the other little boy is much more tolerable as well). Elijah took a little nap and Dan and I even were able to shut our eyes for a short bit.

Elijah is doing great! The Voice removed his dressing a while ago and his stitches look great. This morning he was kneeling along side the edge of his crib and it freaked me out! The doctor said that as long as it doesn't appear to bother him, he can do whatever he wants. He still doesn't love being on his back, but tolerates it better than he did yesterday. All of his vitals are perfect perfect perfect, and he has an appetite that is voracious. He is mostly content lying around, watching shows and playing with toys.

We will most likely be here until at least Tuesday. We are praying for no new roommate (for everyone's sake), but we will see what the rest of today brings. Hospital life is just dreadful. It sure makes us appreciate our home.

Thanks for checking in on us. Pray with us for an uneventful rest of our stay (oh, and for the swine flu to stay down at the end of the hall)!

Doctors

I posted this pic in my last post and didn't fully explain it. Elijah has great hair. Like, really really great hair. It is full of body and it is thick and he gets a ton of comments about it. Well, Elijah's heart surgeon, Dr. Moga, stopped in for a visit today (hmmm, the surgeon who performed his spine surgery hasn't even shown his face, not that I'm bitter or anything). Dr. M is super awesome and laid back and we had a really nice casual conversation. He asked how we were doing and then he caught sight of Elijah's hair and said, "Sweet, whoa! Look at that hair! He's making Moga jealous!" Elijah said his 2-year-old hellos to Dr. Moga, the man who saved his life (appointed by God), and batted his long lashes at him. It is so so sweet to see the look in Dr. M's eyes when he looks at our little boy. After seriously doting over our boy, Dr. M said, "With that hair, I think Elijah might be a newscaster!"

Speaking of surgeons, our neurosurgeon... Wow. So, apparently he is an excellent neurosurgeon (for which we are grateful) and that is about all. We have seen him walk by our room a couple of times but he hasn't bothered to stop by once. Instead, he has others stop by for him. There is one main doctor who keeps tabs on us for Dr. N. Dan and I call him The Voice. He is the one who communicates with the patients. He is very personable, and we are actually very thankful for him because he has explained things in much more detail than Dr. N ever has. Today we learned that Elijah's tether was "very tight," which means that it is probably going to feel very good now that it has been released.

We still have not gotten moved out of the PICU, at almost 9:00 p.m. It is a good thing we aren't easily riled up because we have literally been waiting around all day to be released from this prison. Ah well, we are so used to plans being made and postponed and changed and made and changed and on and on.. Dan is fast asleep in the recliner and Elijah has been sleeping sideways (perpendicular) in his crib for about an hour and a half. I am an insomniac lately so I am writing about all of our weird and awesome doctors! Stellan is still next door and is doing great. I had Chat #2 with MckMama tonight and I don't think she thinks I'm too strange for tackling her in the hallway today.

Ok, I guess I'll go read or something now. More tomorrow.. Thanks for checking in! We love you all!

A pic from yesterday (before the chaos) and one from today (thankfully there is no photographic evidence of the chaos)

We are still waiting to be moved out of the PICU. Apparently there are a ton of H1N1 cases in this place, so a lot of space is being used up by those patients. Don't even ask me if I'm freaked out about being in such close proximity with swine flu patients or I will start to convulse.

Elijah is doing really well still this afternoon. He is totally refusing to go onto his back, which we hear is unusual but not totally out of the ordinary. He has been hanging out on his tummy ever since he got out of surgery. The doctors don't have a problem with this. They say that he will lead, and he will show us when he is ready to move in whatever ways feel good for him.

We gave him a sponge bath today and washed a lot of the goop off his back. His bandages will come off tomorrow. Our boy is doing great!

Don't be embarrassed having me as a friend/family member/whatever I am to you, when I tell you that I attacked MckMama in the hallway today. Well, I didn't really attack, I just hugged her without introducing myself first. I've just been praying so hard for her baby and I never thought I'd ever meet her, so the moment moved me. Hopefully she didn't think I was too strange.

Thanks for checking in and thanks for all of the prayers, especially after yesterday. Wow, what a day that was. It is one that I will never forget.

Better

Elijah had a very restful night. He slept for eleven glorious hours straight after finding just the right regimen of pain meds. This morning at 5:00 my cell phone rang in our little sleep room. Cell phone ringing so early=typically not good, so I frantically answered it. It was Elijah's nurse saying that he was fine, he was just awake and wanted Mama. I was in his room in about one second, looking lovely, I'm sure (not that I care). He was sooo happy to see me! My little love.

We have been doing our best to keep him happy this morning. He doesn't seem to be in much pain, so at least we know we are managing that well. He is totally alert, though, so it is a bit of a challenge keeping his 2-year-old self not only contained in a crib but also flat on his belly. We are rotating between movies/shows, singing, reading, playing, doing headstands, cartwheels and back flips. Ok, maybe not the last few.

Elijah is drinking lots of apple juice and milk and we are ordering some solid foods for him right now. We are hoping for a much much better day today. The little sleep we did get last night has us refreshed and ready to tackle whatever is in store.

Our plan is to move upstairs sometime today. They are really busy here in the PICU right now, so it may be a while. Can you believe that we are in the room next to Stellan? I haven't worked up the nerve to say hello yet. :)

Thanks for checking in on us! Keep praying for our strong little boy. He's so amazing.

ugh

Even with all the crap we have been through at this horrid place, I have never had a day like today. It sucked (pardon the language and the drama). It sucked even worse than this day, believe it or not.

After Elijah's bad reaction to morphine, the doctors decided on another pain medication. A pain med that made him forget to breathe occasionally. Also, a pain med that didn't seem to work very well at first because we spent hours and hours both monitoring his breathing and trying to make him comfortable. He is so traumatized by everything and everyone here. He has tried multiple times to flop all over the place while screaming harder than I've ever heard him scream, so we have had to hold him down on his belly. It was a really really rough day. We finally found the right combination of drugs to help him fall asleep, so he is snoozing right now.

On top of this, he hadn't peed since being out of surgery, so a catheter had to be inserted. Except, it wasn't as easy as that. It took one nurse and two doctors each to try before it worked. That was a whole lot of trauma and tears (Elijah and me both). Today was one of only two days I have ever cried in the ICU.

Please pray for peace for his little body and for a very good night of rest. Thank you for checking in on our boy.

Recovery

We are in the PICU now with our little man. Elijah is resting comfortably on his tummy with his arm wrapped tightly around Monkey. When he is awake he has been super crabby, repeating DUH (done) and BYE and crying and screaming. As we were just told by a doctor, this is an extremely painful surgery, so we really have to stay on top of the pain meds.

Speaking of pain meds, Elijah has developed an allergy to morphine. I had him lying on my lap when I noticed that he was feeling warm. I lifted his shirt up to cool him off only to find a mass of hives all over his torso. His nurse gave him a dose of Benadryl and that seems to have helped. It totally stinks that he has an allergy. It always felt so good to say, "No!" when the doctors asked if he had any allergies. Because he was on the tail end of a cold and because he was intubated (by the way, he was extubated immediately after surgery), he sounds pretty croupy and is having a hard time catching a breath, especially when he is crying. We are waiting for his first round of nebs right now.

We just got to see our beloved Dr. Gremmels! Aaaahhh, we love him. Everyone here is so wonderful. Elijah is one very well cared for little boy.

We will be in the PICU tonight and tomorrow we will move up to third floor, assuming everything goes well.

Please keep the prayers coming for a complication-free recovery (and no more allergy discoveries!). Thank you!

Yay!

Dr. N is one strange dude. He came in to tell us that "Elijah did really well. Really really well!" He then turned and left the room. While this is wonderful news, a bit more information might have been good?

We'll take it, though. He did really really well. And we will get to see him shortly!

Already closing!

A nurse from the OR just called and Dr. N is already closing our little boy up! She even let out a snorty chuckle as if it were highly unusual. In a good way!

He should be all finished up in about a half hour!

In surgery

We just handed the loopy boy over to the anesthesiologists. We have a very good team of people caring for Elijah today. And let me tell you, there is a team! There are lots of people in that operating room today.

We talked to the surgeon for about 2.3 seconds and we discussed none of the surgery, which we both thought was strange. He did tell us about a man who drove into a tornado last night to take pictures, though. Thank goodness we have that information. We are super confident in his skills, but obviously his social skills are lacking a bit.

So now we wait. We will update when we hear news from the OR.

Ghetto, here we come!

Since I don't have any new pics and since pic-less posts are dull (these are for you, Amber!), here is Elijah exactly one year ago, looking very unimpressed.



I did a random picking of the 18th folder in my Elijah Photos and the 2nd picture inside of that, and came to this sweet face.



We are getting our things packed up for our hospital vacation. I'm thinking we should write a book titled Things To Pack For Your Hospital Stay, or Emotions You Should Expect To Feel Before, During And After Your Hospital Stay, or The PICU Is A Dreadful (Yet Wonderful) Place.

I'm feeling simultaneously anxious and peaceful as we prepare for this surgery. Elijah is going to be very well cared for by God, and also by his amazing surgeon and the rest of the amazing staff at Children's. And by us, too, of course. While we have this knowledge strongly on our hearts, the usual pre-surgery battery of mixed emotions are still inevitable.

It's so cool to see how the same people rally around us each time we head into something like this. We have amazing people in our lives, and we are so thankful for that. In the beginning, back when we were novices, it was sometimes hard accepting and comprehending the amount of support we received from people. We felt like we were inconveniencing everybody, and if you know Dan and me, we both have serious issues with this (we have gotten better). Since then, we have learned to: 1) pay it forward and lend support to others whenever we can, and 2) allow people to show their love to us during times like this and to just be thankful! And we are! So so thankful.

yes!

The preliminary whooping cough results came back negative. Surgery at 8:00 a.m. on Thursday is set!

Is surgery on?

We still don't know!

Dan brought Elijah in for his pre-op physical this morning. His lungs and ears sounded and looked great. The only hang-up is that the doctor who sent his whooping cough cultures to the lab didn't request a quick result in addition to the long 7-10-day result. And apparently they won't even allow Elijah in the hospital if he has been exposed to whooping cough and does not have a test result showing that he does not have it.

The nurses called around and found a lab downtown that would be able to culture another sample and give us results by tomorrow at the latest. So, that is where Dan and Elijah are right now.

A couple cool things.. In addition to getting immunology labs drawn while Elijah is under sedation, we are now also getting a hearing test done and allergy labs drawn. It feels wonderful to cross three things off the list without seeing our little boy endure pain or anxiety. This makes me very very happy.

Our super awesome weekend

The weather this weekend could not have been more perfect. Saturday was one of those Top 5 MN days of the entire year. Gorgeous! My sidekick and I spent very little time inside. Lots of park trips and walks and playing on the patio and walking up and down the driveway.

Elijah has had some serious milk cravings lately. Or OCK, as he calls it. Each night after prayers and before sleep, he asks for OCK. I can't deny him since he is using the word correctly, so I always let him have a few swigs. This weekend he asked for OCK not just before bed, but all throughout each day. Is he reverting to the baby years? We are careful not to give him too much so he continues to eat well.



OCK also means PARK. Many many times this weekend I found him pointing outside, toward the park, saying OCK repeatedly. We have to be very very careful in our house not to say the word PARK if we don't intend on going there within the next three seconds. Serious disappointment occurs for the park-lover when the word slips out accidentally.



On Saturday afternoon we drove down to my sister's house to celebrate my nephew's high school graduation. As I said, it was a beautiful day, so it was nice to sit outside and catch up with everyone and watch the cousins love on each other. Elijah got some serious attention.



Even though my sisters and I all live in the same "city," we don't see each other enough. I love my sisters. And I love all of my nephews and nieces.



Swinging was a big hit for Elijah. Could he look any more comfortable? And could Elijah's sweet little cousin Kaleigh be any cuter?



We decided to collectively color a special card for Erik. Elijah took it upon himself to give us an art lesson and show us his special coloring techniques.



On Sunday morning we got ready nice and early and headed into the city to visit our good friend Jess. It was another beautiful day to be outside, so we walked from her house to a cute little restaurant for breakfast. We sat outside and enjoyed some delicious food. We decided it was time to go when Elijah dumped an entire container of Chips Ahoy cookies on the ground (I know, why am I feeding my child cookies for breakfast, right?).

We walked to a few nearby gardens that I had no idea existed. They were beautiful! It felt like we were out in the wilderness instead of in the middle of a huge city. Elijah fell particularly head over heels for the waterfall. He pointed and pointed and pointed at it, even after we were well past it, and then started signing MORE and pointing back toward it.



The flowers, the paths, the trees, everything was beautiful and peaceful. I guess there is a reason it is called the Peace Garden.



The garden across the street was gorgeous, too. There were rows and rows of roses and huge fountains to gaze at. We ran through some sprinklers and Elijah loudly proclaimed DUH (done). Ok, no more sprinklers.



Dan survived another Man Weekend. We relaxed at home in the afternoon and evening, enjoying more time outside. Maybe it was because Elijah was tired that he had a two-hour crying/screaming/tantruming/body flailing party for himself. By 6:00 I begged Dan for a reprieve and fled to the bath tub with my book.



Elijah finished off his weekend with an OCK nightcap and went to bed a tired boy. Oh, and woke up this morning a coughing boy, yet again. Tomorrow morning he will get a pre-op physical and that will determine if he is healthy enough for surgery on Thursday. Please pray with us that the 18th is his day to get this done!

Excitement in the produce aisle

While walking through the grocery store on Saturday morning, I heard a little girl's voice say, "Is that ELIJAH?!" I turned around to see one of the little girls Elijah goes to daycare with, along and her mom and brother. We said our hellos and then turned around to continue shopping. I then heard the little girl exclaim to her mom, "We just saw ELIJAH! That was AWESOME!" It was sooo cute.

This is the same little girl who asked me one time if I was Elijah's grandma. :)

Weekend update to come this evening!

Speech woes and a new scare in the June Saga (this sure is our month, huh?)

Our life lately has been one big speech therapy session. We are constantly trying to get Elijah to blow air through his mouth. He has a whistle that he likes, but once he realizes we are tricking him into doing "work," he usually stops cooperating (of course). We have a few other tricks that we use to get the air flowing through his mouth, but it hasn't changed the way he says his words. I'm pretty (ok, a lot) worried about this. He has already formed some very poor speech habits that we can't seem to correct. After surgery next week we will hopefully have more energy to devote to this issue. Right now I am in weary, surgery-anticipating, sickness-worrying, hospital-dreading mode, so every little thing feels overwhelming. I'm hoping that after this surgery and recovery the speech stuff won't seem quite as daunting.

Thanks to a great suggestion from a heart mama/friend (thanks, Jane!), I am going to try to cross a few things off our list while we are twiddling our thumbs in the hospital next week. I am hoping we can get Elijah a hearing test, and also maybe a consult with an ENT about his possible palette issues. It would be great to get those things out of the way.

That is, IF we are in the hospital next week. The surgery would not take place if Elijah has, say, whooping cough, which is unfortunately a possibility. A slim possibility, but still a possibility. Today I received an email saying that a teenager helping out in the church nursery on May 24th was tested positive for pertussis (whooping cough). Dan and I were on vacation that day, and guess where Elijah was? At church with Grandma, and in the church nursery. I haven't been shy about telling you all how horrible Elijah's cough has been for the past few weeks, so that combined with the fact that the pertussis vaccination is only 70-80% effective in protecting against the disease (because it is not a live vaccine) is a little scary.

I brought him into the clinic immediately and the doctor said that he could have possibly had whooping cough, but whether he did or not, he probably doesn't have it now since he just finished taking the very antibiotic that is used to treat it (thank you, ear infections!). The chances aren't likely that he actually had it, and they are even less likely that he currently has it. This is good news. Still a little freaky, though. They took cultures in the office today and the results should be in next week sometime.

At any rate, Elijah and I have some fun things planned for our weekend together, while Dan grunts in the woods with his friends. I love weekends with my little sidekick (and Dan enjoys being manly in the woods)!

The cute boy

Is this not the greatest face you have ever seen?


Looking at the kids playing in the park and loving it.

Elijah is ever so slightly better today. His cough is still hanging around, but it seems to be better. Dan and I have decided to sacrifice money and keep Elijah out of daycare until his surgery in order to keep him healthy, so Dan will be at home with him on weekdays until next Thursday. Dan has a Man Weekend this weekend, so Elijah and I have a full weekend together, yay! I honestly cannot wait.

Preview of the teen years

On Monday of this week I took a few hours off work so Dan and I could have an afternoon date. While Elijah was soundly asleep at daycare, we went to a local amusement park to get some quick thrills. Dan and I share the love of The Adrenaline Rush, so we had a fun time falling and zooming through the air. We knew our time was short, so we literally ran from ride to ride to fit everything in (and I have shin splints to prove it!). It was a perfect day for doing this because it was cloudy and a tiny bit chilly, so the only people there were teenagers on school outings. The lines were super short, so we were able to make the most of those couple of hours.

I think there were maybe only ten other people in the park over the age of 17. It was a little bit alarming for me to be in the midst of so many hormones and so much drama. I don't know how Dan (or any teacher, for that matter) stays sane! We had a great afternoon and then we grabbed our monkey and headed home to enjoy a yummy grilled meal and an evening together as a family.

Elijah is still coughing pretty badly. In fact, this morning it sounded even worse than it has been. Aside from the cough he is doing fine, so we are holding onto hope that he will be well enough for surgery next week.

How Elijah chose to eat (part of his) dinner tonight

Tunnel troll

Yesterday after Elijah's nap we decided to head to the mall. It had rained all weekend, so we were in desperate need of an outing. There is a giant play area in the mall that is always jam packed full of children and parents (and germs, I imagine). We had never taken Elijah in there before, so we decided to let him experience it.

We really weren't sure how he would handle all of the commotion. We went to the far end where there were fewer people and sat him on the play mat as we sat along the edge and watched. He crawled through a couple tunnels and watched the kids whizzing by all around him. He didn't seek out interaction with anyone else (unlike the little girl who was stalking me), but that was no surprise.

He liked to stay close to his little tunnel, and was often found just sitting inside it (there's that security thing again). One time he even laid down on the ground and "talked" to his hands (that's our boy!). He didn't get too adventurous, but he did way better than either of us thought he would do. The only time he even came close to losing it was when a couple little boys tried to get through his tunnel and he wasn't sure what to do.

We learned yesterday that Elijah is in love with malls. Any time we walked into a store, he would instantly start crying and he would continue to cry until we were back out in the mall. We had to ride the elevator a couple times and each time we did, he looked totally distressed because he wasn't sure if the elevator doors would open into the glorious mall or a dreadful store.

It's so fun to continue to see what makes him happy/comfortable/content. I just love this kid.

Fun videos

Thank you all so much for your sweet comments and emails after my last depressing post. Things are so much better today. Elijah woke up (still coughing, but) in MUCH better spirits. It is a good day. Aside from that coughing.

One good thing about the rainy, cold weekend is that Dan has been at home with us. Since he is here to help out, I have time to do things like uploading video! Enjoy!


This is from a few weeks ago, before the Big Elijah Sickness and in the midst of mine (sorry for the yucky voice). Elijah's therapists were at our house when he crawled over to the ukulele, sat on his OT's lap and serenaded us all with a song.


Here is an example of Elijah's very nasal talking and his very cute counting.


I was trying to record Elijah giggling during his eye goop application (silly boy), but I missed it. Instead, you can see the cute little smoocher in action.


Aren't these giggles the best? And I love how he forces Dan's hand to his feet so he will tickle them, too.

15

There are a handful of reasons why I maintain this blog. One of them is for recording Elijah's medical issues, and the ease of looking back to see what has happened and when, if need be. So, it is for this reason only that I am writing to say that he has caught his fifteenth viral infection of the "winter." Lots of snot, even more coughing, more red eyes (even though we are still giving him eye drops from the last time..??) and a super fussy and tired and whiny boy.

I feel totally beaten down. Like I (well, Elijah, really) am lying on the ground just being flogged repeatedly. His recent speech worries, upcoming surgery and sickness after neverending sickness has me just weary.

Let's squeeze just a few more things onto that plate

Due to the Mother of All Sicknesses, Elijah hasn't been able to go to speech therapy for a couple of weeks. So last night, as his speech therapist was listening to all of the new words come out of his mouth (and nose), she (in addition to being happy about the progress) was very concerned. I knew in my gut his nasally speech was a bad thing, and she confirmed that for me.

It is possible that Elijah's soft palate and pharynx were not formed correctly at birth and that this may be the cause of the very nasal sounds he makes. It is also possible that he has something called velopharyngeal insufficiency (VPI). An ENT would be able to evaluate him and confirm this diagnosis. Lucky for us, we already have a trusty ENT, so we are on the schedule for mid-July.

In the meantime, we have some serious work to do. We will be strongly encouraging Elijah to find ways to blow air out through his mouth instead of his nose.. Whistles, blowing bubbles, asking him to make lots of b, h and p sounds, plugging his nose when he is talking nasally (he surprisingly loves having his nose plugged, silly kid). Since his speech is just starting to develop, we have to take care of this problem as quickly as we can. Bad speaking habits are currently being formed and if they are not corrected now, it may be very difficult to correct them later.

The hypernasal speech may be correctable through intensive speech therapy, or, depending on what the ENT finds in his evaluation, surgery. One thing at a time. Now we are focused on his tethered spinal cord surgery. After that we will focus on the speech issues. I wonder what could possibly be next? Stay tuned, because I'm sure there will be something!

Elijah's speech therapist is also concerned about the fact that he says the ends of all of his words instead of the beginnings of them. She said that this typically would indicate a hearing problem. Honestly, I have never gotten the sense that anything is wrong with his hearing (and I pay super close attention to this sort of thing), but it is something to check into in the near future. He hasn't had a hearing test since birth, so it's probably time we do another one anyway.

Another new challenge for us is Elijah's reaction to the additional kids at daycare (since school is out). He does well in small groups, but not so well in large groups. He gets pretty anxious and whiny and clingy, none of which are good things, especially at daycare. We are praying he will adjust quickly.

When I look at the big picture, things are all working out perfectly. We entered 2009 viewing it as the year free of heart surgeries. We are discovering that it is also the year of taking care of loose ends. I won't lie, I have been overwhelmed with (and a little sad about) all of our Elijah Findings lately. But I am extremely thankful that Loose Ends Year isn't coinciding with Heart Surgery Year. I am also thankful that we are able to take care of these things. Things could be much worse, that is for sure. I am extremely thankful for all that we have.

p.s. Check out the new Calendar tab! Wow, huh? I created this list as something we can print out and bring to new doctors as we see them (since adding doctors to our list seems to be ongoing), but I thought it might serve as a good "calendar," too!

Elijah cures my ickies

I felt pretty uneasy and anxious all day today for a few reasons..

- The awful, fatal traffic accident that occurred last night on the freeway I drive home on every day. It happened just before I would have been driving that same stretch of road. Someone from the northbound lane drove right across the grass median at 70 mph and into a car in the southbound lane.

- I found out today that my friend's mom died on May 11th (So sorry for your loss, Pammy. I love you.) and I feel like a horrible friend for not knowing this sooner.

- Elijah was back at daycare after many days of being sick and at home. I was a little bit extra anxious having him out of our care for the first time in a while. (I wonder if his dc provider was annoyed by all the emails?)

- This story, that I read over the weekend, has been constantly on my heart this week.


The look on my little boy's face when I picked him up from daycare wiped it all away, though. Could someone really be that excited to see me? Sometime I will record video of Elijah when he first sees me after I have been at work all day. Actually, I will have Dan record both of us. We act like we are being reunited after being apart for 50 years, kissing (both), squeezing (me), squealing (both), arm flapping (him), leg kicking (him), laughing (both). I love it. I love him.

Elijah has been extra clingy lately, which is probably a result of his recent nasty neverending sickness coupled with fact that he is naturally a pretty clingy kid. If he could have his way, he would be right next to one of us at all times, preferably making some sort of body contact. Sometimes this is tough, like when we need to do things that don't involve holding a 27-lb toddler, but most of the time I eat it up. He likes to crawl over to us and say UP, UP. We have learned that UP, UP has a very specific meaning. It means that he has to be sitting on one of our laps (with us sitting cross-legged) facing out, with our arms wrapped around his belly or maybe our hands holding onto his arms, as we watch a show or read books or play with toys. He most definitely loves closeness and feeling secured by a safe person, or sometimes an object. We often see him surrounding himself with blankets, chairs, toys, pillows, anything really. I think he has the opposite fear of claustrophobia. Would that be agoraphobia?

As I have mentioned, he is starting to say many new words. We have recently noticed how much he uses his nasal passage to say a lot of these words. Many things he says don't come out of his mouth. For example, when he says TWO and THREE, he moves his lips appropriately but he blocks the back of his mouth off with his tongue and is really just saying OO and EE very nasally. He does this with a lot of his sounds. We have started having him blow into a kazoo to get used to blowing air through his mouth, so hopefully that will help. Have any of you dealt with anything like this? We have speech therapy tomorrow night, so hopefully we will get some ideas there, too.

The sweet, still-coughing boy is asleep and I am headed to the couch to plant my bum there for a while. I hope you are having a nice week!

p.s. So yes, progress is being made with The Sickness Of The Year. Cough, still present (didn't he get this message?). Eyes, all better but still doing drops (which he still giggles through). Ears, still some grabbing but we have another round of antibiotics to get through. Fever, gone. Appetite, slowly improving.