Sunday, August 30, 2009

Another amazing weekend

Once again, our weekend was filled with awesomeness. Elijah and I ventured out to the dropzone (for the first time this year!) to hang out and see friends we haven't seen in a while. We had FOUR of our non-skydiving friends come out to make skydives this weekend, so it was great to see their smiling faces. Sharing skydiving with people is one of my most favorite things in the world.

Elijah enjoyed some time with one of his best buds in the world, Tammy.. (and yes, he is wearing a hat and THREE long-sleeved shirts in AUGUST!)

And he definitely did not lack attention. This boy gets some serious love everywhere he goes.

One of the funniest things from the weekend was when we were chatting with our good friend Kim (who loves Elijah to pieces and vice versa) and I said, "Elijah, can you say 'Kim'?" and Elijah immediately said, "Bob!" We got an enormous laugh out of that. Later, I was sitting with Elijah, watching people land, and we saw Kim make a nice landing. I said, "Oh look! It's Kim!" and Elijah again said, "BOB!" Silly boy.

Phew, another wonderful weekend that I am thoroughly worn out from. We have had the best summer, filled with so many fun things. Life is good! (Minus getting our parked car run into by someone who decided not to tell us about it. We now have a very large dent in the side of our car that will need to stay there.)

Thursday, August 27, 2009

Wrestling with TP

Elijah and I spent a good, restful afternoon together today. He took an awesome nap and he sneezed and sniffled through the rest of our time together. He was wheezy and congested before I put him to bed, so I gave him a high dose nebulizer treatment (he now points to his mask through the entire treatment and says, "Neb, neb, neb, neb") and a small dose of steroids to hopefully ward off croup again tonight. I'm on high alert right now, listening to every little sound on the baby monitor.

Can I ask you to keep Elijah in your prayers? Please pray for health for him. Pray against another "winter" filled with sickness like last year. Thank you.

Modeling Dan's new skydiving gloves. Actually, I think they are intended to be gardening gloves, but they will be used for skydiving.

Despite not feeling well, Elijah still had the energy to, yes, wrestle with toilet paper. He has loved wrestling lately, especially since we got our new rug. He must think it's a wrestling mat?

Could he be more silly?

Croup: Season 2, Round 1

Our munchkin woke up with croup early this morning. This is about right! He got croup for the first time in August last year, too. Luckily it seems like it's not too terrible this time. His stridor was mild this morning, but noticeable enough for us to get out the racemic epinepherine. He has a runny nose and feels slightly warm and I'm sure we'll be hearing his standard cough for a while. Dan will be home with him for a bit this morning and I am taking the afternoon off work to give him some mama love.

Elijah has had a long and wonderful reprieve from illness this summer, and I am just thankful for that break!

Monday, August 24, 2009

Family time

Our weekend was packed full of family time, which was tiring, fun and wonderful! My mom was still in town from California, so we (we = my two sisters and their families, my mom, and us) spent as much time together as possible. We spent Friday at a gigantic waterpark (Elijah loooooooved this), Saturday at my sister's house and yesterday at our house.

Ten seconds after everyone left our place last night, all of my mental and physical energy left my body. I melted into the couch for about 20 minutes before I talked myself into feeding Elijah and getting him into bed.

I love my family more than ever right now. I feel so close to them and I am so grateful for the times over the past week that we were able to spend together. I loved watching Elijah interact with his cousins and I enjoyed seeing my mom again and I love my sisters and their families and I feel such a sense of peace right now.

It might take us a few days to recuperate, but the craziness of the weekend was so worth it.

Sunday, August 23, 2009

Whoa weekend

I cannot even describe our weekend in words. Exhausted and emotional and sad and happy, I am pretty quiet this evening. More later. For now, a few photos..

Elijah and cute cousin Emma in Grandma's hotel room after a long day at the waterpark.

Does Elijah not have the cutest cousins in the world?

Thanks for taking care of my tomato plants, Elijah! This morning he insisted on (very gently) touching the plants about a million times.

Sporting a fake tattoo ("tat," as he calls it) and Auntie Lynn's glasses.

Keith and Kaleigh were so good about trying to get Elijah to climb more than his standard three stairs.

I will say this.. I love my family!

I hope you all had a wonderful weekend!

Thursday, August 20, 2009

Spending time with Grandma Carol!

Elijah and Grandma played a long and very funny game of catch. Every time the ball touched any part of his body but his hands, he would hold the body part that had been hit and then wince like he had been severely hurt. After a while, after figuring out that we all thought it was super funny, he played up the drama and had us in stitches.

Here's the wince...

Oh, and do you like our new, fun Ikea rug?

Wednesday, August 19, 2009

How is Elijah doing these days?


We are so thrilled with the improvements in speech Elijah has made over the past few months. Four months ago he said maybe five words. Three months ago he said about 40 words. Now? He says a couple hundred different words. They are "his" version, of course, and Dan and I usually have to translate to others, but this is huge and very exciting. He even said his first two-word phrase the other day! He said, "Bye bye, Dada!"

His speech therapist just re-evaluated him and the results showed that he is basically caught up! I get little tears in my eyes writing those words because his language explosion has come as a huge and very pleasant surprise to us. He does still qualify for speech therapy, though, because he could use some help with saying the beginnings of words and making the words he says a little clearer in general. He is still using some nasal sounds to say some of his words and that goes hand-in-hand with not moving enough air through his mouth. He has improved a lot with this, so we continue to work with him by encouraging him to use whistles and kazoos and to blow air through straws, etc.

His sign language has taken off, too! A few months ago he had maybe two or three regular signs that he used. Now he will sign (or at least try) any word we show him. Amazing!

Gross motor

Elijah is still working hard to walk independently. He uses his walker more willingly now and he cruises along furniture much more comfortably than he did even a few weeks ago. We still don't know the reason for his very low muscle tone and whether or not his tethered spinal cord surgery has been the reason for his recent improvements or if it will help him with his walking. We would like to think that the surgery has helped, but it's hard to say for sure.

The fact that he is steadily getting stronger is a promising sign. He is now climbing stairs like a monkey, and even going back down them on his own. He wasn't even close to climbing stairs a month ago, so this is another huge feat. He crawls around the house like crazy and he even has a funny half crawl/half walk thing he does sometimes. One thing that we noticed an immediate improvement on after his surgery in June was his willingness/ability to reach out of his immediate comfort zone to get things. This is something he refused to do before, but he was doing it freely within a week of his surgery. Releasing that tether must have made certain movements a lot more comfortable for him.


Elijah's social skills are something I have spent a whole lot of time worrying about. Because of all of his hospital time and sick time he spent a lot of the first two years of his life with just us. Until recently, he has not done very well while in large groups of people, or even medium groups of people or small-to-medium groups of people. It's just something he wasn't used to, so it overwhelmed him.

About a year ago we found a daycare for him that we loved (and still love). It's a small home with a handful of kids for him to interact with. He has gone through some periods where he has been pretty uncomfortable at this daycare, even as recently as one month ago. Some days he wouldn't eat any food, or he wouldn't move from one spot, even though he was physically able to, or he would just seem out of sorts and overwhelmed.

We have learned that he is definitely a kid who needs a little nudging to be a part of social situations because without a nudge, he would be content spending the rest of his life with just Dan and me. Sometimes I feel bad for pushing him into situations that he isn't necessarily comfortable with, but ultimately we know this is the best thing for him. As we suspected it would, his daycare setting has given him confidence that Dan and I never could have given him on our own.

In the past few weeks a switch seems to have been flipped (his daycare provider's exact words) and he is a totally new man! He cruises everywhere, he has been eating and sleeping well and he is playing well and interacting with the other kids.

With that said, Elijah still does have a hard time in some social settings. In really large settings, like the Splash Park we went to last weekend, he still tends to get pretty overwhelmed. When he gets to the point of feeling like he isn't comfortable, he tends to stay in one spot (preferably close to me or Dan) and just observe his surroundings.

We are in the midst of his biggest developmental spurt yet--socially, physically and verbally. I cannot describe in words how wonderful this makes me feel. It is amazing!!!


We will be taking Elijah in for a heart check within the next month or so. The plan back in April (which could very well be different next month) was to do a heart cath this fall and open heart surgery (valve replacement) next spring.


Elijah's weight is good. He lingered right around 27 pounds for almost a year, but recently he broke the 28-lb mark, so this is great. His height hasn't moved much within the past year either but we aren't too worried about that right now, especially with the recent genetic testing all coming back normal.

He is slowly getting past some of his texture issues. He is still pretty selective about putting anything with a unique color or texture in his mouth, but luckily there are a lot of foods he willingly eats. Overall, he is a very good eater. I always call him my little dairy man because he is totally head over heels for all dairy foods.

Potty training is on the horizon, but we haven't begun yet. I don't think he is 100% ready at the moment. We will give it a try this fall.

He still loves trucks, trains and his new recent love is airplanes. I don't know how this kid can hear planes as well as he does. It's pretty amazing. We'll be sitting inside with the doors shut and the air conditioner running while watching Thomas the Train and he will smile and do the sign for airplane and say "AAAyyyyyy!" I'll listen closely and sure enough, I'll hear the ever faintest hum of an airplane in the sky about a hundred miles away.

Elijah is still in PT (2x/week), speech (1-2x/week) and OT (1x/week) and we will be continuing this through the fall/winter, and hopefully beyond that as well. His name has been put into the drawing for receiving hippotherapy this fall, so we are hoping he is chosen!

We thank God every night for the health He has bestowed on Elijah this summer. It has been such a welcome, nice reprieve from the illness-ridden fall/winter/spring of 2008-2009. In a few weeks we will check to see if the Pneumovax booster helped to create the antibodies he was lacking during his immunity check in June. Please pray for this!

There is much more I could say about our precious boy, but I'll stop here. He is doing amazingly well in every arena and we are so thrilled about the huge spurt he is going through right now. We just love this little boy to pieces!!

Monday, August 17, 2009

The rest of our weekend

Dan found his way home to us yesterday! The morning was rainy, so we spent time inside for a change. Elijah helped Dan pay the bills..

..and then got caught up on some work of his own..

Then we bought a new rug at Ikea that makes our living room look fun and also that covers up the disgustingly dirty carpet. And of course we couldn't go to Ikea without stopping by the MOA because Elijah somehow knows the exact GPS location of the Mall of America and starts saying, "MALL! MALL! MALL!" when we are within two miles of it. I have no idea how or why, but it's strangely and totally true. So we went to the mall for a carousel ride and for lunch at the Rainforest Cafe. The "rain storms" and the loud elephants were a bit scary for him this time. The carousel ride was an absolute hit.

My mom will be in town this week from California, so we are getting ready to spend some time with her. She has never met Elijah, so it will be fun to see the two of them together.

I realized yesterday that I haven't given a medical/PT/speech/developmental (etc.) update on Elijah in a while, so I will work on that this week.

Here is a fun photo I ran across this weekend. Elijah must have been about nine months old here. I remember how cute I thought it was that he fell asleep with a giant spoon in his hand.

Saturday, August 15, 2009


We are having a super weekend. We have packed so many fun things into just a few days. I had Friday off work, so Elijah and I went to a splash park that we had never been to before and then we met up with some friends in the afternoon and spent more time in the water. Today involved even more swimming, and now we are finally relaxing. I know I have thoroughly tired Elijah out when he does not want to swing at the park. Yes, that really happened tonight!

We had the entire splash park to ourselves for a good hour before other people started showing up. Elijah did really well getting around in the pool by himself until the other little people got there and then he got a bit intimidated. He didn't understand why he couldn't play with the stairs that led up to the slide, when kids were wanting to use those stairs as access to the slide.

I love this cheesy face.

We spent some time on Friday afternoon with some friends in St. Paul, splashing in some water and getting refreshingly sprayed by fountains.

Ahhhh, the water from the fountain blowing on us felt so nice.

Elijah called his buddy Leo "O!" :)

Leo, munching on a carrot.

This morning Elijah and his friend Kade splashed in our blow-up pool in freezing cold water. They showed their true dedication to swimming.

We played this game for a while today. He still gets a total kick out of peekaboo.

Finally resting after a crazy couple of days. What's in store for tomorrow??

Dan has literally been working all week and weekend. I have kind of forgotten what he looks and sounds like. If someone sees him, could you send him home to us?

Thursday, August 13, 2009


I just talked to a nurse who works with Elijah's genetics doctor and the results from all of the torturous testing from last week came back NORMAL!!! I cried a little bit after I hung up. I'm getting pretty good at the Relief Crying.

Here are the things that have been ruled out by this most recent testing:

- He does not have mucopolysaccharidosis (MPS) disease. MPS is a genetic disease caused by the body's inability to produce specific enzymes, which would cause cells in the body to not form properly which would cause serious damage to the body. No need to go on because it was ruled out!

- His growth hormone levels are normal.

- His bones all have normal formation. In other words, he is not a little person (or any form of that) like his ENT doctor thought he might be. This is the second time this very doctor has scared us with unresearched and incorrect thoughts.


So, in short (ha!), we just have a short little boy. Like mother like son, right?

Tuesday, August 11, 2009


Here is just a portion of one of my many amazing families..

We had a great time being with family last night. My dad and stepmom are (very sadly) heading back home today. It's a bit of a sad day, but we are thankful for the time we had with them and now we will have to start planning our next trip to see them!

We have another busy week ahead, so I'm sure this one will fly by just as all the others do. That's all for now! More later..

Sunday, August 9, 2009

Lovin' summer

Our world has been so totally busy I don't even know where to start! In the past week I have seen FOUR people from my past who I haven't seen in many years, we attended the wedding of a good friend of Dan's, we splashed in fountains and went for walks and visited friends and went to the park and we are currently enjoying even more time with my dad and stepmom. Tomorrow night we are having a bunch of family over for a bbq, so we have more fun to look forward to.

One of my good friends from high school was in town last week with her (very cute, very sweet) family. After work on Thursday Elijah and I headed to their hotel to swim in the pool (a HUGE hit with Elijah) and ate pizza with them. It was sooo good to see my friend and to meet her family!

Then on Saturday I saw a childhood friend who I haven't seen in 26 years!! Julie and I were the best of friends when we were little munchkins. We lived across the street from each other and did absolutely everything together. Then my mom and I moved to California and I never saw Julie again. Well, thanks to Facebook, we got back in touch and we both live in the Cities! Julie has always had a special place in my heart, so I am thrilled about having her in my life again. Her 10-week-old little boy is adorable, and I'm excited to meet the rest of her family and get to know her all over again!

We met our good friend Jess this morning for breakfast and a walk around the city. Elijah greeted people and dogs that walked past her apartment complex.

We walked to a beautiful garden, where Elijah fell head over heels in love with the fountains. That was after we tore him away from his beloved waterfall (he falls in love easily). He loved splashing in them and picking up flower petals and giggling endlessly. Tears gushed out of his eyes when we had to part with the fountains, but he got over it pretty quickly.

On the drive home Elijah said, "Bye bye Ess!" about 956 times. He loves his Jess!

We have even more adventures coming up, and we are looking forward to them all. Since about two weeks after Elijah's spinal cord surgery, the summer has been carefree and fun and wonderful. I am loving it!

Have a great week!! xo

Wednesday, August 5, 2009

Bittersweet week

Grammie and Gramps came and left and we are missing them again. They are still in the state, though, so we will get to see them again before they head back to North Carolina. I was hoping to get up to northern Minnesota (where they will be for the next few days) with Elijah for a day or two to spend some extra time with them but I'm not sure if it's going to work out. I'm super bummed and trying to think of a way I can make it happen.

I love watching Elijah interact with my dad and stepmom. He loves them sooo much, and they adore him. I wish I could stick them both in my pocket and keep them close to us forever.

So we will spend the next few days figuring out what is in store for the weekend. We have been having a good week. My dad and stepmom took Elijah and I out for pizza last night. Dan is working a lot this week, so YAY for that. The weather isn't cold anymore, so that adds some happiness to our lives.

Quick funny story from the other night.. Dan was watching golf for a bit on tv and one of the commercials that kept coming on during the breaks was for a DVD set of war plane footage. One of the clips showed a plane crashing and the others were of airplanes zooming loudly around the sky and dropping bombs, etc. Every time the commercial came on Elijah got super excited and signed "airplane" and said, "AAyyyy!" which is what he does/says lately whenever he sees or hears a plane. So then when the commercial would end, he'd give me a very disappointed scowl and started to fuss because he thought it was some special Airplane Show on tv that I was secretly teasing him with. I would say, "Sorry sweetie, that was a commercial, not a show." Then he would furrow his brow and say, "Ayyyy! Asshhh!" (Airplane! Crash!) about 54 times in a row. He is definitely in an airplane phase right now. He loves watching them, hearing them, talking about them and spotting them in the sky. Anything that makes that little boy's face light up makes me happy, too. Even crashing, bomb-dropping airplanes, I guess.

I hope everyone is having a good week!

Monday, August 3, 2009

Boat rides, family time, sugar, doors, old friends

We had an amazing weekend on the unseasonably cool shores of Okoboji, as we hung out with a ton of family we haven't seen in a while. On Friday afternoon we drove down to my aunt and uncle's house in Iowa for our yearly family reunion weekend. Our time went fast, as it always does, but it was so nice to see everyone again. I love my family.

Last week I had worried about Elijah becoming overwhelmed with all of the stimulation the weekend was bound to bring our way (based on our experience from the previous weekend), especially since we only see a lot of these relatives once a year. Now, after the weekend is over, I can say that I could not be more surprised with how things went and I could not be more proud of my little boy! Not only did he appear to be very comfortable being in close proximity with a lot of unfamiliar people, but he even seemed to enjoy it! I can't even tell you how many times I said out loud that I was amazed at how well he was doing. His comfort level in a social setting like this is huge and very very awesome.

This photo of "Amps" (Gramps) reading a book to Elijah is one of my favorites from the weekend.

One of the big treats from the weekend was that we got to spend time with my dad and stepmom, who we don't get to see very often since they live across the country. They gave Elijah some serious love, and Elijah gave it right back. I love watching my parents genuinely loving my son. There's nothing in the world like that. I only wish I could see it more regularly. They are still in "town" (town = within a few hours of us), so we get to see them again tomorrow and also for a bit this coming weekend. Our visit with them isn't over yet! Elijah just loves them to pieces. Last night after we got home I caught him standing at the bottom of the stairs, looking up and yelling, "AMPS?! AMPS?!" Sorry little man, they are still in Iowa..

Another big treat this weekend was discovering Elijah's love for boat rides. He fell into a super-sleepy-satisfied-relaxed daze on our Friday boat ride around the lake. On Saturday I took Elijah down to the dock and he started to hit, kick and scream when we passed by the boat without getting into it. A few others were heading out for a ride and he wanted to go, too. There happened to be a few open spots, so we grabbed a life jacket and got in for another ride. Again, Elijah was in a very satisfied daze and did the sign for BOAT throughout the ride. He didn't even mind wearing the life jacket, which came as a pleasant surprise to both Dan and me.

Some other cool weekend treats: We stopped by the famous Sugar Shack to satisfy my sweet cravings and add some meat to my thighs. I got to chat with my college art professor who I haven't seen in years and who happened to be showing his artwork at a show close to the Sugar Shack. I got to see a friend I graduated from high school with and who I haven't seen in years (this is kind of a big deal considering there are only 36 of us from the Manning High School class of 1993 roaming the earth).

And I can't write about the weekend without mentioning Elijah displaying his deep love for DOORS. My entire family got to witness first-hand how enthralling the opening and closing and examining of a door is for him. Thankfully Julie and Virgil didn't mind him playing with their fireplace doors all hours of the day. And I had to remove him from the dining room a handful of times because all he wanted to do was open and close the patio door repeatedly. As Dan and I often say, we may need to look into Door Therapy for our boy. "Hi! My name is Elijah and I'm obsessed with doors!" "HI ELIJAH!"

The weekend wore us all out. Elijah stretched out his arms for a little nap on the ride home.

It was back to business as usual this morning. I headed to work and Elijah and Dan headed to the hospital for the dreaded tests. I hate that I couldn't be with my little boy as he was getting tortured, but at least Dan was there to wipe away the tears. I hear the xraying was pretty awful since they xrayed just about every inch of his body and Elijah does not enjoy being held down. It's good to have those done! Hopefully we will get the results quickly.

I hope everyone had a nice weekend! Thanks for checking in on our munchkin.