Wednesday, April 30, 2008

It has Been a Bad News/Great News Kind of Week

First the bad news...Elijah definitely has allergies. He had a reaction on Monday that really scared us. While he has had minor reactions to food before, it was never enough to really make us worry.

It was confusing as to why he had the reaction at all. The weird thing was that he had had the item in question (Gerber 2nd Foods Dessert - Hawaiian Delight...if you’re curious) once before with no adverse affects. I gave Elijah a few spoonfuls of the dessert and it was kind of funny because he acted like he didn’t like it. I thought, “That’s my boy...loves his green beans, but hates dessert.” Within minutes Elijah’s face got all blotchy and his upper chest all red. He was breathing fine and acting normally, so we weren’t too concerned, but it was still scary. We called the clinic and we’re going in two weeks early for Elijah’s nine month check-up. That means we’ll see Elijah’s pediatrician tomorrow morning and they’ll run some blood tests to see what he is allergic to. Hopefully armed with this knowledge, we can avoid any more allergic reactions. Right now, it just seems like one more thing to worry about.

In the great news department...Elijah is doing MUCH better with sitting. I think I can safely say that Elijah is sitting unassisted for a few minutes at a time as of yesterday. I placed the boppy pillow behind him in case he fell, but it wasn’t giving him any support. Granted, I can’t really leave his side as he easily falls over, but believe me, it’s very exciting! I felt like I was floating yesterday, so happy that Elijah is making such obvious progress.

I had a dream last night that I was trying to teach Elijah to crawl and then he just took off crawling down the hallway. This is the second time I’ve had a dream where Elijah was mobile (last time he was running around the house) and while I don’t put much credence on dreams, I think it’s my subconscious saying I believe that he really is going to get there and that he’s on the right track.

Today was Early Intervention and we had three women in our house visiting Elijah...his usual OT, a teacher, and the Vision Consultant. The Vision Consultant performed a vision test and Elijah seemed to do well. Not as good as he should for his age, but he definitely looked at things and even batted at one of the things. Elijah’s OT seemed very pleased with how well Elijah is doing. She thought he seemed more relaxed today in his trunk and like he was in better control of his body. I may be wrong, but every week his OT just seems so incredibly happy about the progress Elijah is making and how fast he is progressing. She said again today that it seems like we talk about things one week and the next week Elijah is doing them. Yes, we’re working hard, but I also know God is answering prayers. Elijah is sitting! That is AMAZING! He got there and much quicker than even I expected. He’s got a ways to go before I can just set him down and walk away, but wow...he really is getting there! Thanks for the prayers!

I’m sure I’ll have an update tomorrow about Elijah’s visit to the pediatrician with a weight update. Stay tuned. :)

Sunday, April 27, 2008

He’ll Get There

Elijah continues to make progress. Sometimes it’s not as fast as I would like it to be, but he’ll get there…That’s a phrase I find myself saying a lot these days…“He’ll get there.” No, he’s not sitting up, but he’ll get there. No, he’s not able to pick things up, but he’ll get there.

Sometimes it’s difficult to be patient. I want immediate results; I want him to do things “on time.” Really, it doesn’t seem like too much to ask. I remind myself all Elijah has been through and realize he is doing extremely well. I count my blessings. He really is making progress and that’s what keeps me going.

So what is the progress? Well, for one thing, Elijah is keeping his hands open a lot more. He will actually open up his hands to bear weight on them, which is a huge deal. I’m sure that doesn’t sound like much, but it is wonderful progress. In the past, we would be constantly prying his hands open so that he could strengthen them and now he’ll open his own hands at times. So why is an open hand so important? It’s because that’s the only way he will gain the strength in his hands to do fine motor things such as pick things up or to crawl and later to write with a pencil.

Elijah also seems to be using his arms more than he used to. He does try to touch things I set in front of him, but I can tell it’s hard for him. He uses more of a cupping motion than a fluid motion. He simply doesn’t have the fine motor skills he should at his age, but he’ll get there.

As evidence of his “getting there,” he did something last week that I thought was very encouraging. I am constantly placing things in Elijah’s hands since he doesn’t do it himself. I think the notion is that he’ll eventually figure out how to do it on his own. Anyway, since he cannot sit up yet unassisted, I will at times put him in his bouncer to take my shower. Last week, I was drying my hair and I glanced over at Elijah. He had a ring in his hand that I had not placed there. I was extremely excited. No, I didn’t see him grab the ring and I somehow doubt he was looking at the ring when he grabbed it. That said, I also realize it takes a lot of coordination to get your fingers around an object (and with your thumb on the opposite side) to be able to grab something and then pull on it to remove the item. Again, it doesn’t seem like much, but it’s huge.

Elijah is also getting closer to sitting unassisted. He can sit for a limited amount of time, but only when he is cooperative and in the mood for sitting. Elijah would much prefer standing and lying on his back to sitting or lying on his tummy. I’ve been trying to focus on doing the things he doesn’t like. Sure, that may sound mean, but those are the positions he needs to be in to grow and develop. He really is getting there. He can sit for longer periods of time and he is tolerating being on his tummy a lot more. To us, these are huge improvements.

Andy and I have learned to appreciate different milestones. Not to say that it’s easy to focus on the little things, but we’d go crazy if we didn’t. Those little things are the huge things that will cause Elijah to develop and “get there,” so it’s a big deal. We may have to help him along a bit more, but I continue to believe that he’ll get there with God’s help and a lot of hard work.

Thursday, April 17, 2008

Another Tooth, More Sleep, Happiness

Things have been busy in this Wagner household lately. Overall life is marvelous and our days are spent with lots of smiles and lots of laughter.

First of all, sleep has been much better for Elijah which, of course, makes such a huge difference. He now has two teeth poking through, both on the bottom, which has made it possible for him (and us) to sleep again. I just hope he keeps it up!

Elijah just seems older to me lately. He is becoming more and more attentive and stronger day by day. I have been aching for him to sit up on his own, but he’s getting there and I remind myself to be grateful for all the things he is doing. His eye contact has improved drastically and it’s so encouraging. I know that Elijah is behind on the charts, but I continue to believe that he will catch up. I have to.

Elijah is just so full of laughs and giggles that it’s hard to be discouraged. He has been so good for me this week. He was excellent for his Infant Class on Tuesday. I think he actually enjoyed himself and hardly fussed at all. Other babies actually fussed more than he did - that was a first!

Elijah was also good for his OT this week. She said she thought he gave her the best eye contact she’s ever seen from him. She brought us this awesome “feeding chair” that we’ve been using and he seems to love it. She also left us a therapy ball, which he also seems to just love. I think our OT is just great and it’s so wonderful to see him interact with her. He just adores her and I think the feeling is mutual. J It seems to me that Elijah makes improvements every single week. Sometimes it’s hard for me to see them because I’m standing too close. I have to step back, like I’m observing an impressionist painting, and watch from a distance. Sometimes life is more beautiful that way.

Overall, that’s what we’ve been up to in this household. We’re enjoying lots of smiles and lots of giggles. I hope you are too.

Monday, April 14, 2008

Our Little Boy is Eight Months Old!

How did it happen? How did the time pass by so quickly? How is our little baby turning into a bright little boy right before our eyes? It seems like just yesterday that I wrote an entry about Elijah turning seven months…and now tonight Elijah turns eight months. The last eight months seem to have gone by so quickly, like that car that passes you driving too fast on the freeway. At the same time, it feels like Elijah should be eight years old with all he’s been through. All we know is that we love him to pieces. Can’t wait to see what the next eight months will bring.

Friday, April 11, 2008

We need sleep…

I think that pretty much sums things up around here. Elijah thinks he’s a rock star and tries to stay up until the crack of dawn if possible. Perhaps that little tooth has something to do with it. None of the remedies seem to help, so I guess we’ll just have to wait it out. Forgive us if we look like raccoons or mumble when we talk to you. :)

Tuesday, April 8, 2008

We have a tooth!

I never thought I’d be so excited to find something sharp in Elijah’s mouth, but I am thrilled to finally feel that “little stinker” (aka tooth) making its way to the surface. We can’t really see it yet, but it’s definitely in there. Perhaps this explains why Elijah had seemed to be on a “sleeping strike” and now is sleeping a lot more. He slept in this morning (but did wake up two times in the night) and then slept through a majority of our Infant Class. Hopefully he’ll be sleeping a lot better now.

Funny how something like a tooth can be so exciting. In my pre-motherhood days I would have thought all this hoopla was silly, but here I am, thrilled about a tooth. Hooray for teeth! Have I mentioned that Elijah got his first tooth? A Tooth!

Yep, I’m a crazy, obsessive mommy and I love it! :)

Monday, April 7, 2008

I thought I’d fill you all in on our trip to the eye doctor this afternoon.

We thought it would be a good idea to get a second opinion, so we saw an eye doc that Early Intervention recommended. It was a long afternoon, but it went well.

We liked the new doctor and have decided we will go to him in the future for a couple of reasons. First the clinic is closer to our house so we wouldn’t have to drive as far. Second, he was an optimistic fellow. Third, he took way more time to explain things to us than most doctors have.

So what did we learn?

The doctor was very explanatory. In our experiences so far, most doctors don’t really explain things well or sometimes they don’t explain things at all. This doctor took the time to talk to us and was extremely optimistic.

He told us that he didn’t really like the diagnosis of CVI, because it’s just a “junk diagnosis.” In other words, it’s a diagnosis thrown around a lot when a child is showing some delay in their vision, but it doesn’t really mean anything. Sometimes he sees kids that have a CVI diagnosis and eventually their sight improves enough to no longer have the diagnosis. With that said, I think that Elijah now officially has a CVI diagnosis. The doc said in our competitive culture and to be able to get services, people want to throw these terms around. Now that he’ll have a diagnosis, Elijah will be eligible to receive services from the Vision Consultant on a regular basis, so that’s the good news.

The doc also was very pleased to see how well Elijah tracked for him. He said it wasn’t just the fact that he tracked the item, but that it kept his interest for quite awhile. He said a lot of kids with brain injury have issues with attention span. He actually said, “Honestly, I’m surprised how well he tracked that thing!”

The doc reminded us that life is a marathon, not a race and that we shouldn’t get too hung up on Elijah’s development. He told us to treat Elijah as if he can see perfectly fine. Elijah’s vision is more similar to that of a three month old, but that doesn’t mean that it won’t improve. It sounded like this doc has seen a lot of kids where just that has happened and there simply is no way to predict what will happen.

One thing the doctor said was that Elijah’s vision is probably fine; it’s just a matter of him being able to turn to look at things. He may see something and want to look at it, but it might be difficult because of coordination or his muscles to be able to look at it.

Overall, it was an informative visit (and I’m not so sure I’m explaining it that well). We liked the doc and will be seeing him again in six months. I appreciated his candor and optimism. Andy asked me when I got home if I felt better, the same, or worse after seeing this doctor. I said, “All three!”

We hope you are all doing well. :)

Thursday, April 3, 2008

I thought it might be helpful and/or interesting for some of you to learn a bit more about cortical vision impairment. Our OT left an article yesterday about CVI and there were some things in the article that really seemed to make sense in regards to why Elijah does the things he does. While it’s hard for us to think that he seems to have some sort of impairment when it comes to his sight, it’s comforting to think that it can improve (and it has already). I’ll take some quotes from the article and then give my own commentary…

Presently, Cortical Visual Impairment (CVI) is the most common cause of permanent visual impairment in children (1-3). The diagnosis of CVI is indicated for children showing abnormal visual responses that cannot be attributed to the eyes themselves. Brain dysfunction must explain the abnormal visual responses, as abnormal ocular structures, abnormal eye movements, and refractive error do not. This would explain why the pediatric optometrist hasn’t found anything wrong when we have gone in for appointments; the problem is in the brain, not the eyes. I am a bit annoyed that she didn’t even mention the possibility of CVI, though. From what I’ve read, CVI in children with brain damage is very common. I wouldn’t want a careless diagnosis, but a bit of a warning would’ve been nice.

Visual regard and reaching (in the child with motor capabilities) toward objects is absent. Hmm…This has been my greatest concern because it seems that this is the area in which Elijah is the furthest behind. He should’ve started reaching for things around three to four months. The good news is that I have been seeing drastic improvements in him lately. He’s opening his hands a lot more and grabbing things. Even though it’s typically not on purpose, he’s getting there. His sight has also seemed to improve a lot lately, which would make sense.

Seizures can cause CVI…Common causes of CVI in infants and young children include hypoxic ischemic encephalopathy (HIE) Yep, this is what happened to Elijah. HIE, by the way, is a fancy term for oxygen deprivation. HIE would be the official diagnosis for what happened at his birth, but no one has ever told us this. It’s been frustrating that no one has ever really told us anything in terms of a diagnosis. I guess I’d rather have it that way than too many diagnoses, though.

The most common CVI symptoms are:  Abnormal light response - light gazing OR photophobia Wow, yes. Elijah is obsessed with lights. He does seem to be getting better with this too. He’ll sometimes break his own gaze and I’ve even had him turn his eyes to me (and away from a light) when I said his name. That is definitely progress.

 Blunted or avoidant social gaze  Brief fixations, intermittent following  Poor visual acuity  Visual field loss - generalized constriction, inferior altitudinal, hemianopic defect Elijah simply doesn’t look at things like you would expect him to. He sometimes avoids looking at people and doesn’t pay attention to toys that are noisy or flashy. He’ll get into these modes where he seems to ignore everything around him and at other times he seems very aware about what is going on around him.

Parents are most disturbed by the child's lack of social gaze and direct eye contact. Active avoidance of or withdrawal from unfamiliar visual stimulation, including people's faces, is frequently reported. This is certainly the case for Elijah, as he seems to avoid making eye contact. People will try to get his attention and he will turn his head the other way. It seems that he does this especially with people he doesn’t know well. It also seems like the more a person tries to get his attention, the more he looks away. He does actively pay attention to Andy and me. He has been improving in his response to stimuli and is more likely to look at people now, even those he’s never met before. He’s always ready and willing to give me a smile and has become so much more interactive lately. I’ll enter the room and he’ll actually look at me, which is great.

Partial recovery of vision in many children with CVI occurs. Improvements are seen in visual acuity, orienting to peripheral stimuli, attention to and reaching for objects and for social gaze. Yay! This is the good news. He can and is getting better. As with everything involved with Elijah, I have to remind myself…Just because he is not doing something now, doesn’t mean he never will. He will get there.

In most children with CVI, acuity does not reach normal levels. This is the bad news. I did not like reading this sentence. I remain optimistic, however, that Elijah will be the exception in this area as well. He has already done much better, I believe, than expected. With prayer, God’s intervention, and a lot of hard work I really believe that Elijah can get there.

Overall, a CVI diagnosis isn’t the end of the world. In some ways it’s nice to have a name to attribute to his behavior. He hasn’t officially been given this diagnosis, but intuitively I believe he will at some point. I hope this article and my comments have shed some light on what Elijah might be dealing with…I know it helped me understand it a bit better. The great news is that he is improving and I can only hope and believe that he will continue. Keep those prayers coming for our little dude. God has certainly been listening. :)

Link to the article:

Wednesday, April 2, 2008

Our spring break is over and it’s been an interesting week so far. The last few nights Elijah has woken up numerous times. It has left us wondering (again!) if he is teething and we have yet to see any teeth. Or he might have a slight cold because he has been spitting up a lot. It seems to be more than usual, but Elijah is usually quite the champion spit-upper. So, who knows?

I pondered skipping our infant class this week (because of the lack of sleep the night before), but decided at the last moment to jump in the car and go. I was glad we went because Elijah was a really good boy and seemed to have fun. Therefore, I had fun too.

Elijah’s Occupational Therapist came over today and we were glad to see her after missing her last week. She said Elijah did a great job today. He did fantastic with his visual attention to faces and to his toy. I also showed her how I’ve been able to get Elijah to prop on his hands and knees (as in a crawling stance). He can do it with very little support. I told her how excited I was about him being able to do that and she said something like, “You should be! That’s awesome!” It was a really good visit and Elijah continues to improve.

One thing our OT said today struck me. She mentioned that it seems like we talk about things and then Elijah is doing them by the next week. All I have to say is keep those prayers coming! He’s doing great. :)

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