Wednesday, December 31, 2008
Monday, December 29, 2008
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!
Saturday, December 27, 2008
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
Building a tower with his new peg board
Wednesday, December 24, 2008
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
Tuesday, December 23, 2008
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!
Saturday, December 20, 2008
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!
Friday, December 19, 2008
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
Thursday, December 18, 2008
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!
Wednesday, December 17, 2008
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.
Sunday, December 14, 2008
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!
Sunday, December 7, 2008
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.
Friday, December 5, 2008
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
Tuesday, December 2, 2008
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....
Thursday, November 27, 2008
Chugging down some apple juice after surgery
Eating yogurt, holding onto the belly button, and...check out those chub thighs!
We were released from prison, I mean the hospital, at 9:00 this morning. We slept in Elijah's room with him last night on the very small and uncomfortable pull-out couch thing, and none of us got much sleep. No surprise there. There are constantly people coming into the room, even when Dr. G gave specific instructions not to bother us through the night. The respiratory therapist who came in at 4:00 did a great job of waking Elijah (and us) up for the day!
Watching Veggie Tales this morning and cuddling with his favorite pillow. He woke up pretty puffy this morning. They had been pumping fluids into him all night, so he retained a little bit of that.
This was our Minneapolis skyline view from Elijah's room. Not bad for a hospital room!
He was intrigued by the stethoscope. He kept handing it to me because he liked it when I put them in my ears and listened to his chest.
We got home and all of us slept for THREE HOURS. That's not saying much for Dan and me, because we could sleep for three straight days if we had the time, but that is saying a lot for Elijah. He was and still is one tired little boy.
After our nap we went to Dan's parents' for Thanksgiving dinner. The food was fabulous, as it always is, and it was good to see family. Elijah just wasn't into it, though. He didn't really want to eat and we could tell he was still exhausted. At one point, he crawled over to his diaper bag, pulled out his blankie, put it on the floor and then snuggled up to it in the corner. We left shortly after that and he stayed awake for about 2 minutes in the car. I turned around to see this:
We put him to bed super duper early tonight. He needs it. He will get caught up within a few days and be back to his usual self.
I am so thankful that this cath is DONE. It always feels good to get over each hurdle. It was a bit of an emotional day for me today. Partially because I'm overly tired, but also because of what we just watched our little boy endure. Again. Hospital time is tough. It is a totally draining and emotional experience. Watching the emotional turmoil that our little man goes through is so super traumatic for us. It always takes me a while to calm down after a hospital stay.
Today, I am so thankful for my little boy's strength, and for Dr. Gremmels' compassion and knowledge and for my supportive and loving husband who is also an amazing father. I am thankful for the amazing hospital we have so close to us and for all of YOU who walk with us in this journey and love Elijah along with us. I am thankful for family and friends and everyone in our lives and everyone who prays for our strong, amazing son.
I hope you all had a great, thankful day! xoxoxo
Wednesday, November 26, 2008
He did GREAT during the cath! He was a little star, as usual. The cath took four and a half hours! That is the longest it has ever taken. Dr. G spent an hour and a half trying to coil ONE collateral artery, unsuccessfully. Everything else he wanted to do, he was able to get done. He ballooned the existing stent that was put in his right pulmonary artery during his last surgery. He also coiled off a few collaterals that were supplying duplicate bloodflow. The collateral that he wasn't able to reach isn't an immediate concern. We will need to keep an eye on it and we can possibly wait (hopefully) till Elijah's next open heart surgery to address it.
Dr. G thinks his next open heart will take place in "a couple years." Not the most ideal answer, but it could certainly be worse. Elijah will unfortunately need more heart caths before that happens. Again, not ideal, but it could be worse.
The pressures in his heart are "ok." Not good, not bad, just ok. His heart function looks great. His oxygen sats are great. He is doing really well. Getting sleep tonight for any of us will be an enormous challenge, but we'll do our best. We will get to leave in the morning, hopefully early.
There is one cute thing I want to share before I go gobble down a sandwich. The nurse who was taking care of Elijah post-op told us that she thinks that Elijah is Dr. G's "special one." Apparently he came back in to check on him a few extra times after the cath and he said, "Hey buddy! You're my special buddy." Awwww, I love it!
Good night everyone. I hope you all have fabulous holiday plans and that you have a fun, safe weekend! Thanks for checking in on our little monkey man.
We just sent a drunk-acting Elijah off to the cath lab. He got a dose of Versed beforehand so he wouldn't freak out during the hand-off. They are getting started a little bit late, but Dr. G hopes to have the whole procedure done in between two and four hours, depending on how much work he has to do.
We have been here since 8:30 this morning. Elijah had a lung perfusion scan and the results from that looked great! There is near equal bloodflow going to each lung, which is really positive. The test itself was easy, but the IV placement and blood draws were traumatic for our little man. Lots of tears dropped from his scared eyes this morning.
All in all though, he did GREAT this morning. Really, he is such a strong little boy. He hasn't eaten anything since 5:00 last night, and he hasn't complained once (besides when getting poked).
We are planning to spend the night here tonight, but it depends on how much work they have to do in the cath lab and how well he wakes out of anesthesia.
They started blocking blogspot from the hospital. So dumb! So if we don't give frequent updates, don't worry. I'm having to send text to people to help us make posts.
Monday, November 24, 2008
- We put together two Operation Christmas Child boxes for children in desperate situations around the world. We put together one Girl box and one Boy box. I just realized this morning that today is the deadline for this, so we scrambled this evening to get them put together and dropped off at an OCC location. It was a lot of fun! We will definitely do this every year.
- I am going to recruit some friends/family members in the Cities to help me make homemade snacks/cookies to donate to Minneapolis Children's Hospital. These treats will be given out to parents/families of children who are staying in the hospital. Having spent time there ourselves, we know what a huge help it is to receive goodies from people, and I can especially imagine how nice it would be to receive something like this around Christmas time. I would love to just bombard that place with Christmas treats so everyone is well cared for in that regard during the holiday season. If you are in the area and you are interested in helping with this, please let me know!
- We donated a frozen turkey to a holiday food drive last weekend.
- We want to put some toiletries, snacks and essentials into a couple big stockings and drop them off at a homeless shelter.
- We know of a family in need of assistance right now. I have mentioned Ellie on this website before. She is my good friend Cara's niece. Ellie was diagnosed with a very aggressive form of brain cancer in April 2008. Her tumor has grown and she is really fighting for her life right now. Her family is dealing with some very difficult times, and among other things, they have many medical bills that have piled up in an attempt to lengthen Ellie's time here on Earth. We would like to help them out in some way. I'm not sure how we'll do that yet, but I am thinking we might give them a nice big gift card for groceries.
- This last "deed" is our fun, "gamble" item. Dan and I are both risk takers after all! We want to approach someone in public, after we have stalked them a bit :), and hand them a note that will be attached to a large bill ($50?). The note will have a Bible verse on it and it will also encourage them to do something good with the money, so the giving will continue, and hopefully multiply. This reminds me of the movie Pay It Forward, but I didn't realize that until just now as I typed this out. We obviously run the risk of putting money into the wrong hands, but it is a risk I am willing to take. I think that this has the potential to create some generous deeds. And if the person we give the money to NEEDS the money, then good has been done!
It feels so good to give. As I said before, I would love to instill this in Elijah and I hope he grows up knowing how important it is. If any of you have other fun, giving ideas, please share them!
p.s. The prayers have worked for Elijah's cold symptoms. He was at daycare all day today and did great. No snotty nose, just a little bit of a cough, no sneezing. Just to be safe, I am taking him in to see his pediatrician in the morning for a pre-op physical to be sure he is ready for Wednesday's cath. I have a really good feeling that Wednesday is the day! It will feel so good to get this behind us. Thanks for the prayers. Keep them coming!
Sunday, November 23, 2008
I took this picture while he was watching cartoons yesterday morning. Every couple of minutes, he would pat each pillow, fluff the blanket, make sure his cup was sitting in just the right spot, put his finger in his belly button and then flash me a satisfied grin. See the pillow with his name on it? If it isn't faced just how it is in the picture (with his name the right way in front of him), he has to fix it.
Elijah's 427th cold of the year seemed to be winding down when all of a sudden today, it seems to be coming back! Lovely. The typical snotty nose and sneezing has begun again, and this almost always means more croup and at least another week of cold symptoms. I want to scream!
His heart cath is scheduled for this Wednesday and if he is sick, it will need to be rescheduled. I have been praying hard all day for some miraculous healing because we would really like to get this over with. The anticipation of hospital time makes me nearly crazy, so I'd prefer not to extend the craziness. But, something I truly believe in is that if this Wednesday isn't Elijah's day to get a heart cath, then it isn't his day. It will happen when it is meant to happen and I will have faith in that.
For the past 1-2 weeks, Elijah has suddenly forgotten that he is an angel sleeper. He no longer takes more than a 20-40-minute nap all day long, and he has woken up at 2:30 every single morning for about eight days in a row now. There doesn't appear to be anything wrong with him when he wakes up in the middle of the night. He just lays there and SCREAMS his head off. Last night I finally went into his room after listening to this for quite a while. I changed his diaper, Dan put him back into bed and he was fine. After these early morning wakings, I hardly ever get back to sleep, so I am feeling very sleep-deprived. I feel like I've reverted back to the days when we were getting up to feed him twice a night. Dan and I have taken turns taking little naps today to catch up, but we're still feeling zombie-ish.
I'm thinking we might give him a pre-emptive dose of steroids tonight before bed to hopefully avoid croup this time. Can I ask you all to PRAY that this Wednesday be "his" day to get a heart cath? Also, for no croup? Thank you! I hope everyone had a nice weekend. I'm still in my pajamas and I love it!
Our 2008 Porta Holiday Giving List is done! I am so excited about it, and it feels so good to be doing this. I'll share it within the next few days.
Friday, November 21, 2008
I was thinking about all of this as I was NOT sleeping at 3:00 this morning (and I haven't even told Dan about this yet), but I'm going to start a new tradition for our family. Every year for the holidays, each person in our house must come up with two things that we as a family can do to give to someone outside of our home. We must come up with our ideas before Thanksgiving, and we must complete them by Christmas. This year Dan and I will come up with Elijah's ideas for him, but eventually I would like for him to come up with his own creative ways to reach out to people.
I sometimes feel bogged down by the presents and the parties and the pressures of Christmas. Don't get me wrong, I love Christmas-time. I will always have a tree and decorations and presents, and Santa will always make a stop by our house. I just want to keep all of the important things from getting lost. I hope that through this new tradition, we can adjust the focus to where it should be. For Elijah, and for us.
We will compile our list this weekend and share it when it's complete! I'm excited!
Strangely, I had copied and pasted these into a document a few months ago, and just ran across them this morning. I love these verses:
2 Corinthians 9:6-9 -- Remember this: Whoever sows sparingly will also reap sparingly, and whoever sows generously will also reap generously. Each man should give what he has decided in his heart to give, not reluctantly or under compulsion, for God loves a cheerful giver. And God is able to make all grace abound to you, so that in all things at all times, having all that you need, you will abound in every good work. As it is written: He has scattered abroad his gifts to the poor; his righteousness endures forever. [quoting Psalms 112:9]
2 Corinthians 9:10-11 -- Now he who supplies seed to the sower and bread for food will also supply and increase your store of seed and will enlarge the harvest of your righteousness. You will be made rich in every way so that you can be generous on every occasion, and through us your generosity will result in thanksgiving to God.
2 Corinthians 8:7, 13-14 -- But just as you excel in everything in faith, in speech, in knowledge, in complete earnestness and in your love for us see that you also excel in this grace of giving....Our desire is not that others might be relieved while you are hard pressed, but that there might be equality. At the present time your plenty will supply what they need, so that in turn their plenty will supply what you need. Then there will be equality.
Luke 6:38 -- Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you.
Proverbs 19:17 -- He who is kind to the poor lends to the Lord, and he will reward him for what he has done.
Wednesday, November 19, 2008
This morning he woke up sounding really pretty good. He had a bit of a cough, but it was loose and the runny nose was gone. We decided not to give him a morning dose of steroids, and only to give him a dose for the next couple of nights before bed. Dan worked this morning, so Elijah went to daycare and did very well! It sounds like he was in a good mood and ate well, so that is encouraging.
Here is some info Dan took away from the appointment yesterday. Recurring croup can be common in premature babies and/or babies who have had breathing tubes down their throats a lot. On top of that, we do know that Elijah's airway is very slightly narrowed, so that can be a contributor to croup as well. Dan got croup a lot as a baby/toddler, so it could also be genetic. With all of these things, and possibly having mild asthma on top of that, he is going to be more prone to getting it.
Since we have gotten so good at knowing when it is coming, Dr. Judy gave us a few refills of prednisone (the steroid) that we can give to him if we start noticing suspicious symptoms. That way we can hopefully open up his airway in anticipation of it. Obviously we can't always know when it will come, but maybe this will help eliminate some episodes. She said to definitely run the vaporizer at night, and to continue with nebs as needed. I like the idea of giving him a pulmicort nebulizer treatment every night through the winter because it certainly cannot hurt.
We will still meet with the pulmonologist on the 17th, and in the meantime we'll do everything we can to prevent another round of croup. I feel much better now, knowing that his pediatrician isn't alarmed and worried like I had been. Having some extra steroids on hand is also a reassurance to me, since his airway responds to them so well.
Elijah even made it to PT last night to show off his new skills! He did awesome. Well, he was a little crabby, but I can't blame him. Vicki was so proud of his desire to kneel in front of everything AND crawl around! He will get more PT tonight and his other therapists are going to be very happy with his progress, too.
The Portas are exhausted. It has been a really draining week for us. We are hoping to get a solid night of good rest for our whole family tonight.
Tuesday, November 18, 2008
Early this morning I heard Elijah start to cry and then he was really struggling to catch a breath on the inhale. I leaped off the bed in a panicked frenzy and ran into his room while Dan ran into the bathroom to turn on the shower. We both recognized the sound over the baby monitor immediately and knew the drill. I felt like we were fire fighters!
When I picked him up, he was pretty upset and really struggling to catch a breath. For a second or two, I had the thought, THIS REALLY IS NOT GOOD, but when I brought him into the bathroom, he calmed down pretty quickly. As long as he wasn't crying, he was able to get air into his lungs. I knew we had to keep him calm, so Dan and I took turns holding him as the bathroom steamed up. We also gave him a nebulizer treatment. After 20 minutes he was much better, but we could still feel junk in his chest when he breathed. I didn't want to put him back in bed because I knew he would cry and get upset and then not be able to breathe again. So we sat up with him until it was our usual wake-up time and then we went about our morning routine.
Dan had to cancel a job he had lined up for today (ARGHHH!!!) and he will be taking Elijah into see his pediatrician this afternoon. I did a little research and it seems as though he has spasmodic croup, which just means that it is recurring and is linked to a respiratory illness. I talked to a nurse on the Lung Line, and she gave me the impression that this is not normal. He should not be experiencing croup so regularly and so severely. Her thought was that there is most likely an underlying reason for it. Maybe asthma, maybe airway problems (he does have a slightly narrowed airway), maybe something else. She suggested I get him in to see his pulmonologist, so I have already scheduled an appointment for that. He can't get in till December 17th, so I'm hoping his ped will be able to give us some insight in the meantime.
This episode wasn't nearly as bad as the last two, but all three have been really scary. Like, in my head I actually think, could this be it? Is he going to stop breathing? Since the second episode last month (the scariest), I've actually lost a lot of sleep over this, worrying about him, listening extra close to the monitor, checking on him repeatedly. From what I understand, there is really nothing we can do to prevent it. We have been running Elijah's vaporizer every night in his room, but the Lung Line nurse said they do not recommend that anymore because of the insane amount of bacteria and mold that build up in them that are then sent back into the air and into his little body. The only home treatments for croup are a steamy bathroom, cold, humid outside air and nebulizer treatments. We do all of these things with every episode, but they don't always work for him as we found out last month as we rode in an ambulance to the ER.
This freaks me out. I worry and anticipate another episode every night. I am praying that we can get some answers so we can all get some restful sleep and not have to spend so much energy worrying about this.
Sunday, November 16, 2008
This picture describes Elijah in a nutshell. He is lounging on his favorite pillow (thanks again, Samantha!) while watching tv, holding on tight to his belly button and crossing his legs. He loves to be comfy.
If you want to help out with our fundraiser, please scroll down a couple of posts and check out the Discovery Toys links. Our party today was great, but we could still use a lot more help so we can give some money to the Children's Heart Foundation. I am always so passionate about giving to this important organization.
I had an amazing weekend with my two boys. It was positive in a lot of ways. I had both of my boys completely to myself ALL WEEKEND, and plus, Elijah started full-fledged crawling! He has been crawling aroung the living room all day today. WOOHHOOOOOOOOOOOO!!! You have no idea how excited I am about this. I am so proud. I get tears in my eyes thinking about it. His progress in the past week has been huge.
He has been so motivated to do things lately and I was motivated to accomplish things this weekend as well. I actually cleaned most of our house and did laundry. It feels so good to have a few things under control and to not just be doing the bare minimum, as I usually do.
I love how cute and bundled up he looks when we get him ready to go outside. Please don't mind the toys all over the place. That's a walker in the background (that he refuses to use) that ECFE loaned to us.
Usually when Elijah is getting sick he starts to sneeze a lot and his nose runs a little bit. Well, both of those things started to happen today. The last two times these things have happened he has gotten some pretty ugly croup. The first time, we headed to the hospital, and the second time, we took an ambulance ride to the hospital. We are praying very hard for no ambulance ride or hospital visit or croup episode tonight. While it is in the back of my mind, I just keep trusting that this isn't going to happen again.
Last week was a wonderful week and we are hoping for the same this week. We need to keep Elijah healthy leading up to his upcoming heart cath (next Wed). Please say some prayers. Thank you for checking in and keeping our sweet boy in your prayers.
Friday, November 14, 2008
He is pulling himself up into a kneeling position now. A week ago at physical therapy, he totally refused to be put into a kneeling position. Now he is eager to do it and he is doing it often. He likes to scoot over to the stairs and pull himself up and play with his toys as he kneels at the bottom of them. On Sunday, when he first started doing it, he was a little wobbly, but the wobbliness is already gone! This must be really helping his core muscles to get stronger quickly.
He is finally willing to move between rooms on his own, which is something he didn't seem to know was possible a short time ago. For the past few days he has been all over the place. He scoots into the kitchen and checks out all the cupboards. Then he scoots into the dining room to play trucks underneath the table/chairs. Then it's back to the living room to check some things out in there. Then it's over to the stairs to kneel for a bit.
This week, for the first time in Elijah's life, he went to daycare every single day! He did great! Not too much fussiness, ate well, napped ok and stayed healthy. The most exciting part for me is that he has started interacting with the other kids a bit more. This makes me so happy!
Another new development is that he has started coloring (well, scribbling). We have paper and crayons all over the house and he seems to be drawn to them whenever he sees them. I get really excited when he does it because we have been working with him on this for a while now. So when he does it, he looks at me like, I'm pretty cool, huh, Mama? I do my clapping and excited yelling and then he looks back down and keeps coloring.
Elijah's physical therapists and speech therapist were amazed at his progress in the past week. It is crazy how quickly he can develop when everything in his mind and body are aligned like they seem to be right now. There were many times this week when I would watch him blossom before my eyes and I would take a moment to appreciate it. To appreciate him, and his strength. To just soak it in and sincerely thank God for where we are at right now. God has been so faithful and good to us.
Tuesday, November 11, 2008
If you want to place an order, do not place it on the website. Instead, call Deb at 651-303-1953 or 715-294-3055 or email: firstname.lastname@example.org. Say you are placing an order towards "Megan’s Fundraiser" and your sales will be put towards Sunday's party.
What Makes A Good Toy?
The greatest benefits of a toy are the joy and self-esteem that children experience when they play with it. One carefully selected toy can do so much for a child; the right toy can literally help them discover a love of learning! A well-chosen toy has certain aspects that make it valuable to a child’s growth:
• The toy can be used in several different ways.
• Children can power the toy with their own ideas and imagination.
• The toy can grow with the child through more than one developmental stage.
• The toy has lots of developmental play value.
• The toy encourages open-ended play. (There is no one “right” answer or way to use the toy...it allows lots of room for a child’s own creative thinking to come into play.)
• The toy engages children’s interest beyond a few minutes – they will continue playing with it.
• The toy is fun, safe, durable, and attractive.
Humans are blessed with natural curiosity and the desire to explore the world around them. Nurturing, loving environments, communication, having lots of room to run, and the availability of good toys are essential for that natural process of discovery to thrive– and this results in healthy, happy children!
WHY DISCOVERY TOYS?
WE BELIEVE THAT EVERY LEARNING MOMENT IS A CAUSE FOR CELEBRATION. DISCOVERY TOYS OFFERS THE HIGHEST QUALITY DEVELOPMENTAL PRODUCTS TO ENGAGE THE WHOLE CHILD - MIND, BODY AND SPIRIT - AND TO BUILD A FOUNDATION FOR A FUTURE LEARNING SUCCESS.
Sunday, November 9, 2008
The only picture I got today. Not excited, not unexcited. But always loving the tractor from Cara and Gary! Thanks, guys, it is a huge hit in our house.
I think I need to teach Elijah some manners. We had a friend over for a visit today and after a few hours, I think he was just done with having a guest in the house. I could tell he was trying to get my attention more than usual and then a while later he looked at my friend and started waving and saying BYYYEEEee!! In other words, can you leave now so I can have my mama to myself again?
We had a really good day and a really good weekend. This time with Elijah has been invaluable. I miss out on so much during the week so it is wonderful to be able to spend solid quality time with him. I noticed so many new things this weekend. He must be in a developmental growth spurt right now.
His therapies have been going very well. He is getting physical therapy twice/week and speech therapy once/week. One of his PTs thinks that maybe he has some vestibular issues. Meaning, since he didn't move around a whole lot during his first 1+ year of life, his inner ear and balance may not have fully formed. Yet. We can change that. Elijah doesn't seem to like being moved unexpectedly or in an unusual way. What we have been doing to correct that is putting him on a swing that moves in every direction. Side to side, back and forth, around in circles. Moving him in unique ways will hopefully help to develop his vestibular system.
We have been focusing on leg and core strength and he is doing really well with that. He still does not like to stand, but over time, he tolerates it for longer periods. I think he knows that standing equals work, and he resists that. He always has. But he has always come around, so I have no doubt that he'll come around with this, too. We just have to be patient, as we always have with him.
He has crawled, but he isn't technically crawling. I don't think he realizes that crawling is a means of getting from one place to another quickly. He still uses his army crawl to get to things he wants. This weekend he was up on his hands and knees A LOT and moving in all sorts of ways, so this is very positive. For the first time ever, I saw him show interest in the stairs today. He set a toy on the bottom step and then pulled himself up to a kneeling position!! A first! That's huge progress. My boy is getting stronger.
Speech therapy has also been going well. The only word he says appropriately and consistently is BYE. Some other words that he attempts when he feels like it are: bubbles (bububububu), buckle (gung-gung), up (upffff), ball (baa) and mama. He says almost every animal sound, in his own interpretation, of course.
His speech therapist feels very confident that he is moving in the right direction. The fact that he does communicate with us (through grunts and pointing and some signing and babbling) is a very positive sign. He will get there. As always, we just need to be patient. I can't let it bother me when I see other little babies his age who can recite the alphabet.
Elijah is doing great! He is progressing and developing and I am so proud of his progress. I just couldn't love this boy any more. He is such a funny, unique kid. I am excited to continue to get to know him as he gets older. I feel so blessed to be his mommy.
I hope everyone had a great weekend. DAN SHOT A DEER! That means deer meat for us for a while, yay! I'm going to go sit my butt on the couch for a bit and wait for him to get home. I miss him! Take care, thanks for checking in...xooxox
Saturday, November 8, 2008
Doesn't he look like such a big boy? My little baby is growing up.
Elijah and I had a good day together. He was pretty tired and fussy for most of the morning (we experienced some pretty dramatic tantrums, fun!) but that's because he woke up at 5:00 again this morning. UGGHHh! I figured he would be good and tired and take a long nap, but nope! He slept for 20 minutes and YELLED for the rest of the time he was in his room. No crying, just yelling. It went like this: AHHhhhhhhhhh! (take a breath) AHhhhhhhhhhhh! (take a breath) and so on. I was sitting there thinking, WHAT?! He never does this. He is our little angel sleeper. So tonight when I put him down he did the same thing when I left. It must be another fun phase. Or maybe the monsters in his closet are pinching him.
Elijah attacked me with stickers. He thought it was super funny to cover me with them. Oh, and he ended up eating one. I hope that's ok? Oops, bad mama.
Since he got so little sleep, I figured he'd be beastly the rest of the afternoon, but it was quite the opposite, strangely. We had a really good time together. We played with play-doh and colored a picture for Grammie P and Grandpa. We played trucks and read books and sang songs and watched Super Why.
A coworker and good friend gave these to Elijah for Halloween. They are so cute! They are bath bubbles. I can't wait to use them.
I think Elijah has OCD. It was so funny to watch him play with the play-doh and the containers they go into. He would situate everything around him on the table just how he wanted them. If I moved anything out of place, he would put it back. I took one of the lids out from underneath a piece of paper and he took it out of my hand and put it back under the piece of paper. He gets everything how he wants it and then he gives it a satisfied look like, yes, this is just how it should be. Silly kid.
I meant to mention last night that Elijah went to daycare a few days this week and it seemed to go really well. Dan called me on Thursday after he picked him up to tell me that the lady who watches him said that he had been interacting more with the other kids. I almost started crying. This kid has been so antisocial and I have really worried about that (it's one of the main signs of autism). I guess an older kid was sitting with him at the table and making him laugh and Elijah was loving the interaction. It might sound weird that I'm so excited about this, but you should see how he usually is around children. He wants nothing to do with them. Next week he will be in daycare every day, so hopefully he will continue to adjust and do great there. I love that he has the chance to spend time with other kids now. I think it is so important for his development, especially with him being pretty behind in most areas.
I'm hoping Dan is having a good time out in the woods and that he is shooting lots of deer. Tomorrow Elijah and I have a few errands to run. We're going to go check on our friends' kitty while they are out of town and we might even get to visit Grandma (Dan's mom) for a bit. She is a city clerk so she has been super swamped crazy busy with election stuff and we haven't seen her in a really long time. Anyway, thanks for checking in and I hope everyone is having a good weekend. Tomorrow I will write about his speech/physical therapies and other developmental things and how they are going. I've been so bad about updating everyone. I'll be better! Off to my nightly bath...ahhhhh.......
Friday, November 7, 2008
This is how much he loves his pillow from Samantha. He snuggles with it every chance he gets.
New mittens Mama got at the dollar section of Target.
New $1 hat, too. Oh and here is my favorite pal, Larry.
This week went fast and has been unique in many ways.
My stepmom was here for the first part of the week and it was sooo nice to have her around. I miss my family so much. It is so nice to watch my parents love Elijah in such a special way. Paula, thank you for visiting, and thank you for loving our munchkin (and us) so wholeheartedly. We love you.
I have had the most intense week at work than I've had in a very long time. I have a project due on December 12th, and I am working very hard to meet that goal. This week I stared harder at my monitor than I have in years. I believe that is the reason that I have woken up with a migraine every single day this week. Luckily, Advil seems to help, so there was only one morning that I was writhing in pain. Every other morning I have taken Advil when I first notice symptoms so they don't get too much worse.
Dan is hunting this weekend. It is the one weekend every year when he is able to do this. He enjoys it a lot. Maybe this year he will shoot another deer for us to enjoy throughout the winter.
Elijah and I have nothing planned for the weekend, which is nice. I am looking forward to a weekend with my chunky monkey. Tomorrow we may head to Kohls because I have a good coupon. Other than that, we will just be hanging out at home.
Please pray for our good friends tonight. Andrew lost his sister to cancer today. They were on their way to say "goodbye" but she passed away before they got there. She was very young (38ish) and had a familly of her own. My heart has been breaking for them all day long. Please pray for peace for them. Good night. I'm heading to bed. Thanks for checking in on us.
Tuesday, November 4, 2008
Look at my long hair!
Notice anything different?
I've been so absent lately! Life has been crazy for us. We were gone all weekend at my cousin's wedding up north, and we have also been spending time with my stepmom, Grammie P, which has been just awesome. Elijah is doing well. His cold has been gone for quite a while. Since the weekend he has been a pretty tired, crabby boy, but today, for the first time in a while, he was in a chipper mood and he was 100% pleasant to be around. He most definitely needs his rest. He is just like Mama.
After two minutes in the lion costume
Not so sure about this, Mama..
At his buddy Leo's birthday party. It actually looks like he is being a social kid!
The standing is getting better every day! It's still a constant struggle, but we do see improvements. (Yes, his hair is shorter. I did it all by myself!)
My awesome cousin Nathan, his wife Carrie-Ann and my stepmom Paula. We had soooo much fun at Ann Marie's wedding on Saturday. Sadly, I did not get a single picture of the bride and groom. How silly is that.
Snuggling with his new pillow from Samantha. He LOVES his pillow, Samantha. Thank you sooo very much! This is exactly what we wanted.
Wearing his "I voted" sticker on his nose