IEP meeting and BATHS!

Yes, you read that right. Sammy is now willingly taking baths! Finally! We had to trick him a bit, but it has been working. We have started putting Elijah in the bath first, not saying a word to Sam about getting in. Eventually, Sammy decides for himself that, HEY! That looks like fun! And he comes over to join his brother. Only because it was his own idea. I have never known a more independent person than Samson David Porta.

I posted this photo because you can see Elijah's lazy eye here. We especially notice it when he's not wearing his glasses, but it occasionally happens when he is wearing his glasses, as well.

Dan and I attended Elijah's Evaluation meeting and also his IEP meeting this afternoon. I always get nervous about these meetings because sometimes it is hard to hear about all of the things that are "wrong" with our boy. These meetings get much easier the older he gets, and the more I get used to attending them. Back when he was really behind in every area, they weren't so easy.

Today's meeting was good. Dan and I are so proud of how far Elijah has come. As we sat and listened to everyone talk about concerns and areas that need improvement (and ALSO how smart and friendly and likable he is), I remembered where he was at three years ago. He has come so far. Incredibly far!

The nurse who attended the meeting said the most perfect thing. She had read through Elijah's medical records (which we very much appreciate), and she said that people who have valve replacements need a lot of time to function at full capacity after the replacement occurs. For the first few years of his life, he lived with a temporary valve and also with very low oxygen saturation in his blood. As the nurse said, HE IS JUST BEHIND. He started late for good reason and he is just behind. This is what has been on my heart so strongly for the past six months. He had such a late start, so it is understandable that he has so many delays. 

There are literally 26 pages of information about Elijah that we went through today. We are so very grateful to have such amazing and focused care for him. His "team" is seriously awesome, you guys. We are blessed beyond words.

In a nutshell..

Elijah's academics are a non-issue. He is above average in this area. He is finally interacting with his peers at a "normal" level, which is music to our ears. 

Concerns: His fine motor skills are very delayed and they are starting to get in the way of his productivity in class. For example, he needs helps twisting the glue cap open and closed and turning pages in a notebook, so he spends his time asking for help instead of accomplishing tasks. Winter is almost here, and he is unable to snap and button and zip and tie. That means that time will be taken away from other important tasks as he tries to get these things accomplished.

As has always been the case for him, gross motor is a concern, as well. He is unable to keep up with his peers. We were encouraged to hear that although he cannot keep up or physically participate in the way that his peers do, he adapts well! He can't jump while turning in a circle, but he can do his own little circle dance and accomplish it as best he can. He can't sit unassisted for the entire circle time, but he leans and adjusts his weight and body as he needs to. He can't keep up with the kids while they walk to the library, but he does his little half-run that gets the job done.

And the other main concern was Elijah's distractibility and his need to constantly repeat things and have things repeated. Dan and I can relate very well to this concern, as we remind him to do things CONSTANTLY at home. Repetition is a major theme for us. 

So there it is. Elijah is behind, but he is making progress. He has very good reason to be behind. We support and love him and we will do anything in the world to help him continue to catch up and be the happiest person he can be. We feel so incredibly thankful that he has such a caring and competent care team. Honestly, they are the best. Elijah is one lucky little guy. 

And our Sammy. We love him so very much. He is a cute, smart little boy. My most recent prediction about him is that he is going to have a love for music. He can tell me the name of any instrument just by sound and he has this natural, deep little singing voice. He still loves to snuggle, and every night he has to sleep with his blankie ("bebe"), blanket ("banket," which he likes for me to cover his back with when he goes to bed), cow ("Cowwy") and bear ("Baloo"). He often talks to and cares for the stuffed animals in our house, which is the cutest thing.

I love these precious boys!

Thanks for checking in! Have a great weekend!

Parks and friends

On Dan's day off this week we took the boys to a different park for a picnic and play-time (since we are getting a bit tired of the same ol' parks in our neighborhood). What you see in this photo is the happy time before the madness. Soon to follow was Sammy's fall on the gravel, resulting in a bloody lip and many many tears. 

Do you see the turquoise ("light blue" by Elijah's standards) slide in the background to the left? It was literally just finished being installed when we arrived, so Elijah and I were the FIRST ones to ever go down the slide! And do you see how long those slides are? Can you believe that our cautious boy went down both of them all by himself multiple times?? He did. I was proud. He did not stop running up those stairs, which is a great sign.

Sammy has been battling a little cold this week involving green snot and extra sass. Tonight when I put Elijah to bed he had a mild fever (ugh), so I gave him some Tylenol and a big smooch and said a prayer that he will feel fine in the morning.

We have been spending a lot of time at parks in these nice-weather days. I have been observing a lot of behaviors at said parks, both from other kids and my own. I won't get into the behaviors of other children because I could write a novel on that and it would be mostly negative. I will tell you what I have observed about Elijah. Nothing surprising, and they are all things we have known for a while but it is still all interesting.

HE LOVES PEOPLE. When a new kid enters a playground, he gets extremely excited. His little arms start flapping like he's going to fly off the planet. "Mom! What's that kid's name? Where does he live?" Sometimes if he is feeling confident, he will approach other kids and say, "What's your name?" Once the other kid wants to start running around (because most do), Elijah withdraws and usually starts talking gibberish (not good).

He physically cannot keep up. Not even close. He is just slightly ahead of Sam with his gross motor skills, which puts him 3 years "behind" his peers. And I can tell it makes him a little bit sad. It definitely hinders his interactions with other kids his age. Because he is more slow climbing stairs, he does NOT like people being behind him. Ever. I think he feels like he is going to get trampled. He constantly lets everyone ahead of him until he is the last in line. He will not go down a slide if other kids are on the playground equipment with him. He has to be the only one or else he will let everyone in front of him.

The other day he was telling me about the monkey bars at school and how a friend of his was hanging from them. Then he got this super sad look on his face and said, "But.....I cannot do that, Mom." Ohhh my heart hurt for him! He wants to be able to "hang" with his peers so badly, but just cannot. I said, "I know, honey, but you will! We are working so hard on it!" "I know, Mom."

We saw one of his classmates at the park the other day and he was running circles around Elijah and climbing and jumping and hanging. Elijah was trying soooo hard to do the same things. He would take one step up the climbing wall after his friend but then would step back down. His classmate would say, "Why aren't you coming?!" And Elijah would start his nervous gibberish talk, which means he doesn't want to talk about it.

I used to always think he would catch up eventually, but at this point I'm not so sure. I know that he will keep progressing, but he will always be well behind his peers in the physical/gross motor sense. And I guess that really only "matters" during these really young years when kids are so active. I have prayed, and continue to pray, SO HARD for him to connect with a friend in kindergarten who will not want to run around the playground at top speed and dangle from the monkey bars. I pray that he finds a patient little pal who will stick with him and hang out with him because he is smart and funny and friendly. I envision that friend being a girl because up to this point all of his good buds have been girls.

And speaking of kindergarten, Dan and I have Elijah's kindergarten meeting tomorrow with his new teachers, and current preschool teacher. We will put our two cents in regarding his care next year. I'm curious about it and don't really know what to expect. I just know how much we adore our boy. We will always be his biggest advocates!

Grounded

Elijah has always been an exceedingly cautious child. He avoids the tops of stairs (I actually have always been very glad about this!), he will not walk on uneven surfaces or surfaces with unfamiliar textures, he does not like being moved out of a vertical position (upside down or sideways, for instance), he won't walk up or down stairs unless somebody is securely holding his hand and he avoids situations where he is not in control of what is happening with his body (this is why swim therapy was such a scary, awful experience for him).

I recently talked to Elijah's physical therapist about these things and she told me that he is the textbook definition of someone who has "gravitational insecurity," which is a sensory processing disorder involving the vestibular system. (You can read about gravitational insecurity here and here and here.) I have done a little bit of research on it, and without a doubt, it describes Elijah to a T.

He will not step onto playground equipment that other children are playing on because he doesn't know what they might do to make him fall or stumble or feel out of control. Most of the time he won't go on playground equipment even if no one else is around because I think he feels like bad things could still happen to him. A few months ago we were at the park and a little girl ran up the stairs of the playground equipment so she could go down the slide. Elijah yelled after her, "Be careful, little girl!" :)

His situational discomfort is something we have had to be really sensitive about. We have tried to find a good balance between encouraging him to try new/scary things while very much respecting his fears. When Elijah is forced into a situation that he is not physically comfortable with, he has a really tough time emotionally.

We are just getting him to ride his bike again after a long hiatus. He gets scared when he rides over certain parts of the sidewalk that are even slightly sloped or curved. During his biking hiatus, I would consistently ask him (in a non-pushy way) if he wanted to ride his bike. If he said "no," I would say "ok!" If he thought about it for a second, I would try to gently encourage him. For most of the summer, he would not get on his bike unless he stayed within a five-foot, FLAT radius in our garage. Just in the past week he has slowly started trying it again (very cautiously) on the sidewalk and I am so proud of him!

Because he has lived such a "grounded" life, I think his body (or brain) craves controlled movement. Swinging is a really good source of controlled movement for him and this is why we cannot get him off the swing once he is on it. His PT has given us other exercises to do with him that can satisfy this "craving" so we can try to keep his vestibular system as happy as possible (without scaring it).

This is just my personal opinion, but I also believe this is why he flaps his arms. It is a safe, controlled movement that is somehow satisfying an innate need.

I worry about what all of this means for him and whether or not this will cause even more anxiety for him than is already present in his little life. It already affects the way he plays and interacts with other kids because he constantly wants to make sure he is in control of his body and his surroundings.

One thing that does give me peace is to think about the progress he has made. A year ago, he wouldn't reach one inch out of his comfort zone for a toy. He screamed through every physical therapy session. He had no desire to walk. He has come a really long way, and I have faith that he will continue to make progress.

I have been doing a whole lot of thinking about everything I have written here. It has been one gigantic puzzle that I have been slowly piecing together for the past six months. I feel like I finally have a good grasp on this part of Elijah and like we are finally starting to understand the reasons for some of his actions/non-actions. Although, I do feel like there is still one hole in the puzzle. I am still trying to figure out what caused him to become so gravitationally insecure.

Why do sensory issues seem to follow a lot of children who have major medical conditions? Could some of Elijah's gravitational insecurities stem from his non-movement for the first fourteen months of his life (which was the result of having such low blood-oxygen saturations)? Lots of things yet to ponder and research!

Now when somebody questions some of Elijah's behaviors or asks why he is hesitant to try certain things or why we don't always push him to try things he is not comfortable with, I will point them to this post!

Happy tears are flowing

Recently at the place where Elijah receives outside speech and physical therapy, his therapists tested some of his adaptive skills to see how well he knows how to do things like get dressed and wash his hands. And, well, he just didn't know how to do any of these things. At first I felt like a pretty terrible mother for not having taught him these skills. I carried this weight around with me for a couple of weeks before I talked to Elijah's wonderful ECSE teacher about it.

She reminded me that we have not had the opportunity to teach Elijah a lot of adaptive skills because of his delayed gross motor development. Think about how difficult it would be to pull up your pants or go to the sink and wash your hands without being able to walk or stand independently. He isn't able to do lot of the tasks that fall into the "adaptive" category because not being able to walk greatly hinders him.

In order for Elijah to have qualified for the ECSE preschool that he will be going to in February (yay!), it was required that he need assistance in two main areas. A few months ago, those two areas were clearly gross motor and speech. Now that he's talking like a superstar, his two new areas are gross motor and adaptive skills.

We sat down and chatted with a team of amazing ladies yesterday regarding Elijah's IEP (Individual Education Plan) for special education. I choked back tears throughout the entire meeting because I just could not believe the amazing things that were being said about him and the positive things that were written on the report lying on the table in front of me.

The speech pathologist spoke first and she said that Elijah falls well within the normal range for speech (minus articulation), so her services are no longer needed. WOW! The occupational therapist said that, again, Elijah falls well within the normal range and that HER services are no longer needed, either. WOW again! The one therapist he does still need is his physical therapist (she will help him with both his gross motor and adaptive skills delays), so his PT wrote out some great objectives for him to accomplish while he is at school.

Elijah will start preschool on February 23rd! He will go for 2.5 hours, two mornings a week. His teacher and PT set some challenging yet attainable goals for him, so they will be working with him on his specific needs each time he is in the classroom. A lot of his goals have to do with him using his walker and this makes me smile. I love the thought of my little Elijah cruising down the school hallways in his walker! I asked him yesterday if he was excited about going to school and he giggled like he was the happiest kid on the planet. I don't know if he truly knows what "school" means, but he will get to find out soon enough!

I am so happy that he qualifies for this preschool program. I believe it will be extremely beneficial for his development in all areas. I think he is a kid who will really thrive in school. We met his teacher yesterday, and we already know the speech therapist who will also be in the classroom, and we love both of them. I am also happy that Elijah is doing well enough to get rid of speech and occupational therapy through the school district! (He still gets speech every other week through his outside therapy and will get assistance with articulation from the ST in his classroom.) Six months ago, we never would have dreamed that all of this could be a possibility before he turned three!

And, I keep thinking about the dream I had about one year ago. That pretty much sums up the rest of my happy tears.

I am so so proud of my little boy.

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!!