Pushing through!

This week seemed like a loooong week. We have three kinds of days lately....ok, rough and really rough. Today was rough. There was a lot of name-calling and icky words/tones. At times I have had to raise my voice because otherwise nobody would hear me! Then Elijah screams, "STOP YELLING AT ME!" Then Sammy bosses Elijah around and Elijah screams, "STOP BEING BOSSY!" Repeat repeat repeat. Yelling, name-calling, screaming, etc.. :(

I was thankful that my sister-in-law offered to have both boys over to her house for a few hours this afternoon. I drove straight back home and sat on the couch and basically did nothing for two hours. I pulled Pinterest up on the iPad and vegged on the couch. It was awesome.

Homebound schooling did not start this week (hopefully next week?), so I have been doing my own tutoring at home with Elijah. It has been a struggle getting him to sit down to do 45 minutes of school work every day, but we are making progress! I came up with a sneaky plan where I place 10 small candies in a bowl in front of him. Every time E whines/complains about doing work, I eat one of the candies. He can have whatever is left at the end of the session. To foster Sammy encouraging Elijah to do well, S gets the same number of candies that E does at the end. Neither boys got any candies for the first three days. Yesterday they got three and today they each got five. Progress!

I brought Sammy to his kindergarten screening today. Awww, my sweet little guy was so apprehensive about the whole ordeal. We were only there for 30 minutes and it was a piece of cake, but being in a school was overwhelming for him. His main issue in kindergarten is going to be separation anxiety. Everything else is great! He did super on all of the "testing" today. One of the ladies who tested him was someone from the special education program who used to come to our home every week to help Elijah when he was a baby! It was so good to see her. She had last seen Sam when he was six months old and she couldn't get over how grown up and sweet he was! She said a couple times, "I wonder if Elijah remembers me? He was such a sweet baby!"

Sammy has shown signs of anxiety lately and I hope it is just a four-year-old thing. He is worried about tornadoes, losing his parents and "bad guys" stealing him from his home. If you knew me as a child, you are now chuckling! He is definitely my sweet, sensitive, worried little boy who needs to feel safe and secure. We are doing our best! We love that boy so much!

We are heading into the weekend tired but praying for a bit of restoration for all of us. Soon, right? Soon Elijah just has to start sleeping better. Have a great weekend and thank you for peeking in!

I'll wrap up with a screenshot of one of Elijah's recent nights of sleep, as tracked by the amazing FitBit. Blue is "asleep" and red is "awake." Ugh..

How is Elijah doing these days?

Communication

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.

Social

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!!!

Cardiac

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.

Other

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!!

Let sleeping dogs lie (i.e., let happy little boys be happy little boys)

Sighing hugely.

Dan and I took Elijah to see his genetics doctor this morning for a follow-up visit. We hadn't seen her since April, so we caught her up on all that has happened over the past few months. Elijah's ENT doctor had spoken with her since he saw Elijah in his office last week and he shared some concerns with her. His ENT doc feels that Elijah might be some form of a "little person" based on his short arms, big head and short stature. His genetics doc disagrees with him. She thinks that although Elijah is indeed a very short person, he does not look disproportionate.

She wants to run three more tests. A urine test to check...I honestly can't remember. A blood test to check his growth hormone and an xray to look at his long bones to rule out little person-related stuff.

After these tests, for crying out loud, LET'S LEAVE THIS KID ALONE! And she agrees with that. Let's allow him to grow and develop without all of the stress of this constant testing. And to be honest, there really isn't much left to look at.

She does feel that she is "missing something." That there is something to explain Elijah's anomalies that we just haven't figured out yet. Who knows. Maybe there is, maybe there isn't. And if there is, I know that discovering what exactly that whatever is, could possibly help us to understand Elijah better. For now, though, I just want him to enjoy life and I want to allow him to be as doctor- and hospital-free as possible. Heart stuff is on the horizon, so a break before then would be nice. Dan will take Elijah back to the hospital on Monday for the three tests I listed above. After that, I'm putting my foot down! We are done with tests for a while.

After the appointment this morning we had a very tearful drop-off at daycare. It was pretty awful, complete with gigantic tears and hiccupy cries. If Elijah had any say, he would spend his time with only Mommy and Daddy, 24 hours a day, 7 days a week. He has regressed socially quite a bit since his surgery in June, so we have been pushing Elijah a bit in that area. By "pushing" I mean taking him to daycare almost every weekday so he gets used to being around other people regularly. He is definitely a kid who needs a little social "pushing." As a child I was like this as well (to a much greater degree), so the apple doesn't fall far from the tree!

We have a super fun weekend ahead of us! We get to see my dad and stepmom and many other family members on my dad's side. Elijah is sooo excited to play trucks with "Amps" (Gramps) and to sing songs with Grammie.

Busy weekend

We had a busy weekend! Saturday I took my boys to a Tastefully Simple party (because I can't stand to part with them on the weekends). Luckily, Dan is good friends with the host's boyfriend, so the boys bonded in the kitchen while the girls sampled food and spent money in the living room. Saturday evening we headed to our good friends Ronda and Andrew's house for the night. We celebrated St. Patty's Day! Elijah even got to wear the famous green Porta hat. We had a really good time. This morning we drove home from The Picks' house and for the first time in a long time, headed to church! After church the three of us went out for a spontaneous lunch at the Green Mill. We went home for a long family nap and then went to the Mall of America to meet the awesome Eric, Ellen and Leo, some good skydiving friends of ours. Leo was so cute, sharing his crackers with Elijah. Now Elijah is sleeping and Dan and I are having some down time before bed. We have a big week ahead, with his heart cath on Wednesday. I'm totally dreading it because of the SEVERE separation anxiety E has been displaying lately. I guess we'll see how it goes. Thanks for checking in on us. We appreciate your love and prayers!!


Elijah checking out Ronda and Andrew's cool stained glass elephant lamp


Mommy, what is on my head? (Ellen, do you recognize my shirt??)


Jess taking on the persona of Elvis


Green beer!


Cute Ronda and Andrew pic(k)


Elijah playing with his new toys from Auntie Carolyn and family. He loooooves the drum and tambourine!

Proper banana storage

Elijah is still sick, but I believe he may be on the upswing. Dan stayed home with him Monday through Wednesday of this week in an attempt to get him healthy as quickly as possible. As some of you out there may know, staying home with a baby by yourself for multiple days in a row is no easy task, emotionally and otherwise. It gets really draining (no offense, Elijah, you're so totally worth it!), especially when that baby is sick. A few nights ago I opened the silverware drawer to get a spoon, only to find a half of a banana mingled in with the steak knives. I showed Dan my finding and he looked at me glassy-eyed and said, "What?! I was trying to increase the life span of the banana!" I've been teasing him about it all week. Elijah, ease up on the poor daddy, you're making him weary. :)

Right now our poor boy has the reddest butt I've ever seen. Last night when I put him in the bath he screamed bloody murder. The water must have stung his poor bum to pieces. We got some magic cream from the doctor so hopefully that will work quickly!

Have I mentioned the recent increase in clinginess? He is one clingy kid these days. I don't know if it's because he's sick or because it's just that age or both, but he needs one or both of us touching him if anyone else is within twenty feet of us. His one year photo session was quite a challenge last weekend and Dan said he had a complete meltdown at the doctor's office yesterday. Just when we have some hospital time ahead! Ahhhhh yes, it should be interesting.

Assuming he keeps getting better, we're still on for the cath next Wednesday. Please keep our sweet chunky man in your prayers. We want a healthy boy on Wednesday and good results from the cath! Thanks for checking in on us!