What a good year it has been. Happy 2009 everyone.

Home time

We spent our entire weekend being at home together. We did some cleaning and laundry and organizing and it feels awesome to be somewhat in control of our house for once. It has been a cluttered burden for so many months. Every room I walked into, I would moan and think of about 23 things that needed to be done. I even cleaned and organized Elijah’s room this weekend. As I was scraping dust off the shelves, I realized that I had never once dusted those shelves before. We put them up just before Elijah was born, TWO YEARS AGO. Gross! I have no idea how parents who work outside the home and who have more than one child have time for anything besides the bare minimum. How does anything ever get done? One of my goals for the new year is to do my best at staying on top of everything, or at least not allowing myself to be controlled by the dust bunnies in my house. It’s amazing how good it feels to have a semi-clean house. I think I need a five-day weekend every week!

Elijah is still a sick boy. I think he could break records with the amount of green globby snot that slides out of his nose every thirty seconds. He was up coughing a lot through the night last night. At 4:30 I went in to sit with him because he was coughing so hard I was sure he had thrown up. Thankfully, he hadn’t. I thought he might go back to sleep after a quick neb, but as I was rocking him he started “honking” my nose in the dark and giggling and trying to tickle my neck. Buster heard the commotion and started barking, so we were all up early to start our day! It actually worked out just fine. Dan was able to take Buster for a much-needed walk and I got some quality Elijah Time before heading to work.

It was weird being at work today. After five straight days of nothing but Dan and Elijah, I felt like I was missing a limb. I found myself worrying more than usual and of course missing Elijah more than usual. My sweet little peanut. Which leads me to.. There was a period of time yesterday where Elijah was not so sweet. He threw the biggest tantrum I’ve seen yet. I was giving him a bath and he made the sign for all done, so I assumed he wanted out of the bath. I took him out and he started doing the floppy fish back arching screaming thing that is always so much fun. He was wet, so I was barely able to hold onto his slippery little body. I laid him down to put a diaper on and it just got worse. Once the diaper was on, I walked away to let him work through it. Except, he kept following me. He followed me into the laundry room and started hitting my legs and banging his head on the laundry basket as he wailed. So I went over to the computer. He crawled over to me and did the same thing. So I went downstairs. He flopped around and screamed for probably ten straight minutes in the hallway upstairs. I was actually worried that he was going to do damage to his little feet, as forcefully as he was kicking the ground, over and over. After he realized I was going to outlast him, and after angrily tossing a few toys over the railing, he started playing nicely with his blocks. I came back upstairs and all was well! Ahhhh, toddlers..

99% of the time, though, he is just the best little boy. He has such a sweet little spirit. All weekend he would crawl over to Dan or me and pull himself up on us and say, “Haahhhhhhhhh!” and smile. He was stopping by to say HI! You would think he has southern roots with the way he pronounces his only two words: Haahhhhhh! and Baahhhhhhh!

I hope you all had a wonderful Christmas and that you ate lots of yummy food and got lots of nice things from Santa.. Have a good week, everyone!

Post Christmas recuperating

Finally, willing to use the chubby legs!


Gazing longingly into each other's eyes

We have been having a really good, relaxing weekend. We had a nice Christmas with Dan's family and the rest of the time we have spent at home, cleaning, recuperating, resting and playing. Elijah loves all of his new toys and can't seem to get enough of them. We are also still enjoying Buster the dog's company. He is a really good puppy. We have him till Tuesday morning, and it will be a little bit sad to see him go.


Where's Elijah? Our house is being taken over by toys..

Elijah's sickness from last week turned into a respiratory illness so we are battling that right now. He actually slept ok through the night last night, so we were happy for that. I'm hoping things will start getting better from here.


Resting his feet on his wipe container...silly kid..

We hope you all had a Merry Christmas and that you're having a good weekend, too. Thank you so much for checking in on us.


He loves his new truck from Ronda and Andrew


Opening presents at Grandma and Grandpa's house




Look! New bath toys!


Content reading his book under the table, away from all the commotion. That's our boy!


Elijah and Buster bonding


AAawwwwww


Building a tower with his new peg board

Awesome cardiology report!

I hope everyone is cozy at home right now, spending quality time with family. We are! Because of Dan's dad's unexpected hospital stay (he's home and doing just fine!), we are spending tonight at home, just the three of us, and tomorrow with Dan's whole family, instead of the other way around.

Elijah's cardiology visit went perfectly today. Minus some trauma from having blood pressure taken and getting weighed and measured, everything went great. Things look perfect post-cath, and we don't expect to go back for four months, wooohhooo!! Dr. Gremmels even took us back to the secret room with all the computers in it and showed us the live "video" of his cath from last month. It was soo incredibly cool! It's so hard to believe what can be done by inserting a tiny catheter up the vein in his groin and into his heart. We got to see the bloodflow throughout his chest and we got a clear picture of his heart's anatomy. It is all so much bigger than I had ever pictured. I always thought everything they "worked" on was on the left side of his chest, but that's not true at all. They do work throughout his entire chest area, and plus, his heart is pretty huge. On the video we could also see all of the metal he has inside of his little body. He has about seven looped wires going up the center of his chest, meant to keep his sternum closed after surgery. Then he has a stent and the 12ish coils dancing around all over the place as his heart beats.

We finally asked The Question: What will Elijah's limitations be, and what is his long-term prognosis? I have been so afraid to ask this question, so we never have till now. I should have asked it sooner, because I think it would have given me some peace. Dr. G's answer was awesome! He said that Elijah should be able to play any sport he wants to play. He won't be the fastest and he won't be the slowest. He WILL tire more easily than most. Because he will never be "the best" in sports where speed or endurance is a factor (soccer, football, hockey), he most likely wouldn't want to continue with these sports to a super competitive degree anyway. Contact sports may limit him when he is within one year of a heart surgery, but other than that, we shouldn't try to limit him. As far as prognosis for the future, Dr. G thought that Elijah should live a normal life, going into adulthood. Having had so many surgeries, risks are obviously added to his life (heart failure, cardiac arrest), but they aren't likely (1-3%). Now, I know nothing is ever certain, but it feels so good to have Dr. G confidently say these things to us. He knows the inside of Elijah's body better than anyone, so his words are comforting.

His next open heart surgery will most likely be sooner than we had expected. Dr. G thinks we should be able to stay away from the hospital in 2009 (minus a heart cath or two), but 2010 is most likely his year for OHS #3. Kids with his anatomy typically need the valve replacement sooner than most, but after this next one, we SHOULD have quite a few years "off."

That's it for now. I just wanted to get this update written so tomorrow I can focus on Christmas, and posting fun pics and video of STEPS! You all are such an important part of our lives. Thank you for being so supportive of our family and for loving us. I don't know what I would do without all of you! God bless you all...and Merry Christmas! oxoox

Sunshine through the snow

I have recently become really sensitive to the negativity I see in the world around us. In response to it, I have tried to restructure my thoughts and actions so that I focus on the good side of everything. This morning on my way to work, I started to think, UG! STUPID SNOW! STUPID COLD! but I stopped myself before I got too worked up. I turned it around and tried to see the positive things. Even in the early morning darkness, snow is beautiful! The trees look so fragile and pretty covered in it. I continued to focus on the good things, and by the time I got to work, the positivity wasn't forced at all. If it gets a little warmer, we might be able to take Elijah sledding!

From now on, I'm going to do my best to apply this principle to every part of my life. Negativity breeds negativity. If I focus on how Elijah is sick a lot and this and that and wahh wah waaah...well then, that chaos will probably just continue.

So with that as my new philosophy...onto a quick Porta update..

Dan is feeling much better after his tummy bug, and Elijah hasn't thrown up since Sunday, woohoo! He woke up in the middle of the night coughing, so we were on top of it right away this morning with a neb.

We are dog sitting the cutest puppy ever right now. We get Buster for a week, and we are falling in love with him! He and Elijah are so cute together. Elijah likes to touch Buster and check him out (he's soooo soft). Buster sees that as an invitation to lick his face and sometimes knock him over (gently) out of excitement. Elijah doesn't seem to mind. He just makes funny faces in anticipation.

We are fulfilling two of our Giving List items today, and before Christmas we will fulfill the last one. It feels so good to help people out this time of year. I love it!

I can't be totally sure, but I think Elijah tried to say, "Hi Daddy" yesterday. It came out as, "Hah Dah." I think his speech is on the cusp of some serious development, and that is so exciting. I can't wait to hear his sweet little voice say real words. He certainly is good with the fake words. Sometimes Dan and I listen to him through the baby monitor as he talks to himself before falling asleep. We just laugh and laugh. The sounds and inflections that come out of his mouth are hilarious.

Elijah is taking steps! His legs are stiff as boards, and he has to hold both of my hands, but HE IS TAKING STEPS! I didn't even see this coming. His PT tried it last week and he just did it! I will get video this week sometime and share. He looks uncomfortable and robotic, but...STEPS!

Tomorrow is Elijah's post-cath cardiology check, so keep the cute boy in your prayers. Also, Dan's dad had a scary thing happen last night, so keep him in your prayers, too. He recently stopped taking his blood thinner medication (for his heart) and they think that may be why his body formed a blood clot in his head that is slightly affecting his vision. We're praying it will go away with medication.

We have some fun doggy-Elijah pics to share later. Sooo cute...have a good day everyone!

Snowy and sick

I wish this picture weren't so blurry...Elijah looks so cute bundled up in his hat and puffy coat.

Up until just a few hours ago, Dan was a very sick guy. He couldn't keep anything down, including water. Finally tonight, he was able to start drinking and eating a bit. Elijah was the same way for a while today. It got to the point where I started to worry that we would have to bring him to the hospital...through the snow. I think it snowed all day long! And it's supposed to snow and blow a lot tomorrow, too. Before bed, Elijah was able to keep some apple sauce, water and yogurt down. Thank goodness. Tonight before dinner I started not feeling the greatest myself and wasn't able to eat much. I am thinking positively, though, and I'm not accepting illness.


My two sick boys, snuggled up in the LoveSac, watching Veggie Tales..

We're praying for a healthy night for everyone....including all of our family and friends!

p.s. Elijah is 22 months old today!

Sickies

I have two sick boys on my hands. Dan has been unmovable from the bed, and Elijah started throwing up again tonight. Last night and into today he had a fever so we thought things might be done, but they apparently aren't. He ate "nothing" at daycare today. I picked him up early, and we spent a glassy-eyed, tired afternoon together. Tonight after he threw up all over the dinner table, I knew he needed a little extra sleep and a little extra love.

I feel so helpless, having both of my men feeling so yucky. I pray that tomorrow is the turnaround day.

I don't really have anything else to report. I don't even have pictures. Maybe this weekend, since it is supposed to snow a lot and we probably won't go anywhere, I'll get some good ones.

Please say prayers for my awesome boys! Thank you. ooxox

Poop vomit smell yuck

I knew something was "off" last night before I put Elijah to bed. He was acting funny and seemed uncomfortable in a way I've never seen before. I put him to bed knowing that something weird was going to happen in the middle of the night. It wasn't his normal croup routine, so I knew it wasn't going to be that..

I heard a gagging noise over the monitor at 8:30 and ran upstairs to find Elijah covered in vomit and crying. We threw him in the bath and changed his bedding and I started to rock him back to sleep. More puke. More changed clothes for both of us. Dan started to rock him. More puke. More changed clothes for both of them. This went on for quite a while. We went through almost every one of his blankies and every towel in our house. Our washing machine was working hard! I laid down with him on a mattress on his floor. He threw up a couple more times. It finally seemed like he didn't have anything left in his tummy to possibly throw up, so I put him back in his bed and laid down on the floor so I could hear if he threw up again. A little while later, more throwing up. More changed bedding, scrambling to find another blankie for him, another change of clothes. UGhghh!

Finally the throwing up stopped, but he didn't sleep very well. This morning he chugged some water like I've never seen him chug before. Fifteen minutes later, he threw it back up. I decided to go into work a couple hours late so I could get a little sleep. I woke up to Dan saying, "AGGhghhh!" I thought Elijah had thrown up again, but I found the two of them in the bathroom with poop everywhere (sorry Elijah for telling the internet about your poop...luckily you're a boy so you might think that's funny someday..)! Dan was gagging and Elijah was giggling so I started giggling. He hasn't had a fever at all and he appears to feel just fine unless he is in the act of throwing up, so I suppose those are good signs. So far today he has been ok. Dan said he ate some toast and a little water and has kept everything down.

Please keep our little man in your prayers. I feel like this is just a little quickly-passing thing, and I hope I am right. This next statement will tell you how much croup scares me.. I would rather experience a night like last night over a croup episode ANY DAY!

Pulmonology report

First of all, I have to say that Elijah has THE BEST doctors on the planet. If we researched all pediatricians, specialists and therapists in the world, we could not possibly hand pick better care for our little boy. His pulmonogist, Dr. K, is no exception. He is a knowledgeable, compassionate, thorough doctor. At today's visit, he asked us an extensive list of questions and he was able to assess Elijah's croup and explain it to us in detail. He asked questions about Dan and me, and showed genuine interest in all of us. We even chatted about the new addition to Children's Hospital and how the CARDIAC-ONLY intensive care and recovery units will be done by next summer. This is awesome news for us! Anyway, I digress... Here is what we learned today:

Elijah has "recurrent severe viral croup." This is (of course) the worst kind to have. Only one in around forty or fifty kids with croup get it as severely as he does. He seems to have crazy odds like that on a lot of things. I'm thinking he might win the lottery some day. Or make it on Survivor.

The one good thing about this diagnosis is that since his croup episodes have always been linked to respiratory infections, we can be somewhat prepared for the possibility of an episode occurring. We can usually tell when it might happen, based on his cold symptoms and what stage the cold is in. If our instincts tell us that he might have an episode, we are to give him a nebulizer treatment with a high dose of pulmicort and a dose of oral steroids before bed. This will hopefully prevent an episode from happening. If we don't see it coming and he surprises us with an episode in the middle of the night, we are to immediately give him oral steroids and a high-dose pulmicort neb treatment. If it doesn't get better after a few minutes, we are to give him a dose of racemic epinepherine, also through the nebulizer. This is what they use in hospitals to treat croup. It relaxes the bronchial smooth muscle, helping air to get through the windpipe and airway more easily. If the epinepherine doesn't help, then we call 911.

I love having a plan. I also love having a medical professional truly understand how frightening and serious these episodes are. I also love that Dr. K trusts us enough to give us these medications that aren't usually given out so freely, and that he trusts us to use them appropriately. He said that croup is scarier than almost any other "normal" child illness, and I definitely know what he means. I think I have stressed out more about this than I have about Elijah's heart. Ok, maybe not, but it definitely comes in second.

Ironically, Elijah's cold stepped up a notch today. He coughed off and on for an hour before I got him out of bed this morning. Tonight could possibly be a contender for a croup episode, so Dan will keep an extra close eye on his symptoms throughout the day.

One unrelated thing Dr. K was concerned about is Elijah's sacral dimple combined with the fact that he protests standing. Other doctors haven't shown great concern about this, but it really wouldn't hurt for him to get an MRI to rule out spinal problems. Getting that lined up will now be in the works.

That's all for now! My lunch break is up and I must get back to work. Thanks for checking in.

Normalcy

Hello, we're here. I am so sorry for such few posts lately, for those of you who check in regularly on our chunky boy. My big project at work is DONE DONE. Ahhhhh. Dan and I went to the company Christmas party on Friday night and had a good time. I wanted to take some pics to share from that night but our camera batteries died. Ronda, you'll have to share with me! The rest of the weekend we have been hanging out at home, cleaning, doing laundry, sleeping, relaxing. Aside from Dan and Elijah both being sick, it has been really nice. It feels so nice not to have to work on the weekend!


This is a nativity scene that my stepmom gave me a few years ago. At first when we put it out, we wondered if Elijah would be too rough with it. He is actually very gentle with it. He likes to crawl over to it and point to Baby Jesus and the sheep and the shepherds and situate them how he likes and then he will just sit and look at it. (Look! The curls are back!)

Dan has a head cold and Elijah has a gunky nose. We are being extra careful and giving Elijah his nebs and running his vaporizer through the night in hopes of avoiding more croup. This Wednesday we have an appointment with his pulmonologist so it will be good to get insight from him. Next week is his cardiology appointment, which I always dread. We have no reason to think anything should be wrong, but it's always in the back of my head.



Elijah is such a funny little person and he makes us laugh constantly. This morning I walked into the living room to see him hugging and kissing the DVD case for Wall-E. He didn't care for the movie, but he certainly was smitten by his picture on the case. He is still saying "BYYYYYYEEEEeeee!" to everything. It is really the only word he uses appropriately, so it doesn't get old for us. I think it's cute that he feels he needs to say "bye" to the grocery store when we leave and the items in the cupboard when we shut the door and the books as we close them. He also knows some letters of the alphabet! We have his little alphabet books to thank for this. Each little book has a letter on it with pictures inside that start with that letter. He hands these to us constantly. His favorite letter is Q because one of the things inside the book is "quiet" and he likes it when I say the word really softly. Right now I am listening to Dan say, "Girl. Gate. Guitar." Elijah must have handed him the G book. I know I mentioned this before, but he has has these "conversations" with himself that crack us up. He uses inflection and almost every sound possible and speaks these alien sentences back and forth between his hands. It's almost as if his hands are his imaginary friends and they are talking back to him and talking to each other. When one of his hands "talks," the fingers move along with what he is saying. He also pretends to read books. He will stop at a page and jabber and then turn the page, jabber some more, and so on. When he's done, he shuts the book and says, of course, "BYYYYYYEEee!"

I better go save Dan. I hear a tantrum developing. I hope you all had a good weekend!

We are alive

The froggy PJs are so cute. Every time he wears them, he looks closely at the frogs and says, "Ahh. ahhhhhhhhh," which is his sound for "ribbit."


He just loves to feel secure and surrounded and comfortable. We made him a "fort" out of his favorite blankie and his walker and he loved it.


Another security thing...he loves to crawl under the table and surround himself with chairs. I have never known anyone who has needed security more than Elijah does. I guess I can't blame him.

I think I need help. I started reading Twilight, as it is my book club's next book choice, and ever since then my life hasn't been the same. Ok, I'm partially kidding. But partially not. It is a four-book series, and I AM IN LOVE. I just started book two tonight and I have butterflies in my tummy thinking about what might happen next. WILL BELLA BECOME A VAMPIRE??

Aside from my freaky weirdness, our weekend has been good. Dan and I celebrated his birthday with many friends on Friday night. My husband is so loved. So many people came from all parts of the city to celebrate with him. It was a great night. Elijah was with Dan's mom through the night, so we felt like we didn't have a worry in the world! We have the most amazing, supportive friends and family.


I had a room reserved for us at the bowling alley we went to and when we arrived we noticed it was reserved for "Megan Ponta." That gave people many laughs.


These are some of our most awesome, favorite skydiving friends. We love you guys, and thank you so much for celebrating Dan's birthday with us!


This is my cutest cousin Ann Marie and me. Isn't she adorable?

Saturday we spent the day with Dan's parents and Grandma making Grandma's famous and excellent raviolis. It was an all-day affair, but totally worth the effort. Some day Dan and I would like to continue this yearly tradition with our own family. We ended up making 400+ raviolis, so we will enjoy these for the next few weeks.

Today I spent a lot of the day working. This upcoming week is going to be a rough one for me. Once it is done I will be the happiest woman alive! I'm not sure that I've ever been so stressed and pressed by a project at work in my 11+ years of being in the working world.

I have to share some cute Elijah things quick before I head to bed. He has been soooo funny lately. I wish I could get his whole life on tape, but it never works out that way. In the previous two weeks his gross motor development had really been blossoming. Now, it seems like his speech and other aspects are blossoming. Things never seem to blossom at the same time. Lately, he has conversations with his hands a lot. He will hold up a hand in front of his face and "talk" to it. It sounds like he is talking part Japanese and part German. Then his other hand will chime in, in a totally different language, maybe part Russian and part Chinese. His hands go back and forth in a heated conversation. He is so engaged when he does this. I wonder what in the world is going on in his little mind.


Mmmmmmmm, ice cream!

He says "BYYYYyyEE!" to everything. When we put the lid back onto his play-doh container or when we finish reading a book or when we put toys away or when we walk into another room......BYYYYEEEEEEee!!!!!


Sitting at Grandma's house, grinning the cheesy, beautiful grin.

Just today he started acting like he was afraid of Larry the Cucumber from Veggie Tales. WHAT?! He has loved Larry for his whole life! Now, whenever Larry talks (not sings), he reaches for Dan or me and wraps his arms around our necks as tight as he can. I hope he gets over this soon. Larry is his long-time friend!


Happy 30th, Dan!

There are so many more cute things to share, but I'm tired and I have a long week ahead so I must go to sleep. Thanks for checking in. We love and appreciate you all so much! Have a wonderful week. I now must go enter the vampire world before bed for a bit.

Really quick...

I wanted to post very quickly while I have a second. Today is my wonderful husband's birthday, so I thought I'd publicly say HAPPY BIRTHDAY, DAN! Thank you for loving me and for walking close by my side on this crazy journey. I would not have been able to go through such huge challenges with anyone but you. I love you and I hope you have a great birthday.

I have not had a single moment to read all of your blogs this week, so I apologize for that. It has been a totally insane week for me, and next week will be, too. I'll start getting back to normal on the 13th, when this project doesn't consume my life anymore.

There is one last cool thing I want to share while it is still fresh in my mind. Every once in a while I will have a vivid dream or a thought that I just KNOW has meaning. I had one this morning that was awesome. It wasn't really a dream. It was more like a picture I saw in my head that was connected to a bunch of vivid feelings and descriptions. The picture I saw was of Elijah as a 5(ish)-year-old, sitting in a room with another kid about his age who had some obvious physical challenges. The vivid feelings I had about this snapshot were that Elijah will probably need to be in some sort of special education classes, at least for a while, once he starts school. As I looked more closely at the picture, it made me genuinely happy to know this. I could see that he will be helping out the other kids in an immense way. I can't explain it very well, but there is something about his personality and spirit that will greatly benefit kids who have even greater challenges than he does and who may not be as accepted by the other kids. The next thought was that not only is this totally awesome, but that in the long run Elijah will be a much more accepting, non-judgmental person because of it all. It makes me so happy to have these positive images and thoughts in my head and on my heart.

I must go! Have a great weekend, everyone. xoxoxo

Absent

I apologize for my lack of blogging lately. Life is seeming pretty overwhelming for me right now. I feel like I don't have time for anything except for the absolute bare necessities. I have a huge project due at work next Friday (YIKES) that I have been frantically trying to get done, so that has taken up a lot of my time and energy. On top of that, it seems like almost every night is booked with something for the next few weeks. Dan's 30th birthday is this Friday so I have been trying to think of things that will help make his day special.

I'm tired. I want a mental break. It's a good thing I have made my nightly baths a priority because they have definitely helped to keep me sane.

Elijah is doing well. He spent the entire weekend resting up from his cath last week. One night in the hospital equals a SLEEP-DEPRIVED baby for one solid week, we have learned. He has been going to sleep at 5:30 every night since we got home! If I were smart I'd start going to bed at the same time.

We don't have much to report. I just wanted to get an update out so you all knew we are doing ok. I do have some cute pics to upload, and some cute things Elijah is doing to talk about but I'll have to save those for later in the week.

The five minutes it took to write this is all the time I have for a tiny lunch break today, so I must go! More later....