Tuesday, March 31, 2009

Day Nineteen

Yesterday, Elijah was pretty tired. What's new, right?

Since it was our last day with Elijah's primary PT, Amy, we chatted a lot about stuff that I can do with Elijah at home. I'm starting to wonder how I will keep him entertained every day. He's probably going to get bored with me after being entertained all day long by therapists for the last month! J

The first thing the PT or OT did every morning (this entire month of therapy) was to heat up Elijah's left arm with a hot pack and then massage it. This would help his left hand become unclenched. Here is Amy massaging Elijah's hands yesterday…
Day Nineteen - 3-30-09 Day Nineteen - 3-30-09
The kid has abs of steel. I really don't think that I would be able to do all the things he's able to do on a ball…
Day Nineteen - 3-30-09 Day Nineteen - 3-30-09
Elijah's new friend, Ben, made him a going away card. I asked him what the drawing was at the top and he said they were "silly stairs" (He must've noticed all of the stair climbing Elijah did!). I loved how Ben would call Elijah "Jah" at times. What a sweet little boy. "This is for you E-Lie-Jah, I'm going to miss you." So sweet!
In speech therapy, Elijah removed a ring all by himself!! I wasn't even watching that closely, because it kind of came out of nowhere. It was unprompted and it's just an example of how much more Elijah is using his hands. See the orange ring on the floor? Elijah took it off all by himself!
Day Nineteen - 3-30-09
We had to say goodbye to Amy yesterday. Bye Amy! Thanks for everything.
Day Nineteen - 3-30-09 Day Nineteen - 3-30-09
As I write this, we're completing our final day of therapy. Tonight we drive home. Keep us in your prayers for safe travels.

Saturday, March 28, 2009

Nineteen Months

This photo was taken two weeks ago, when Elijah was exactly nineteen months old. I can't believe that we're on the downward slope towards TWO.

I can't but help to smile at this photo. He just looks like such a little boy and I'll never get sick of seeing our little (BIG) miracle walking around.

Day Eighteen

Elijah was really tired yesterday, so he wasn't very cooperative for Friday's therapy.

The good news was that I was able to chat a lot with Elijah's PT, Amy, and I learned a lot of stuff. Like I've said before, I consider this therapy for Elijah education for me as well. I think Amy convinced me that we need to get braces for Elijah's feet. She mentioned that he barely needs any support, but braces should help him balance and feel his feet better. I'm actually kind of excited to try them out. They're called SureStep and we'll be talking to our Physiatrist about them shortly after we get back home.

Elijah did get to drive a car, though, completed more obstacle courses, played with toys, and climbed the stairs - to name a few things he did on Friday.
Day Eighteen - 3-27-09 Day Eighteen - 3-27-09

And, on our drive to the HBOT facility, the little man FELL ASLEEP! I couldn't believe it. We got in the tank and Elijah stayed asleep. I couldn't believe it. And then, he slept through the entire dive. I really couldn't believe it. It made for a easy dive. I'm sure Grandpa Dennis would've appreciated a dive like that sometime last week! A big thanks goes to grandpa for completing all the dives last week (except for my easy one) and for wrestling with Elijah in the tube. It is much appreciated and made my life easier.

Today, I was really excited to see Elijah showing interest in other kids at church. He's never been all that interested in other kids before. He usually wouldn't even look at them, but today, he was smiling at other kids, walking up to them, getting really close so that he could see them, and even reaching out to touch them. He was even smiling when this little girl was playing peek-a-boo with him and tried to chase her around as much as his vision would allow. It warmed my heart to see him interacting with kids close to his age; I almost get teary-eyed thinking about it.

Two more days of therapy and we're coming home. Yay!

Thursday, March 26, 2009

Day Seventeen

Elijah had an excellent day.
Day Seventeen - 3-26-09
This morning in speech therapy, Elijah was grabbing his vibrating elephant. He was using both of his hands to reach for it. What was really cool was that he was so fast and accurate in his response. I've been noticing that he is definitely using his hands more and he's just getting so fast with them. He looks, he sees, he wants, and then he reaches – and that process (at times) can take only a matter of seconds. This is so new for him and I can't even begin to describe how exciting it is. He's reaching for things on a regular basis. Finally, finally, finally our little boy is starting to use his hands!
Day Seventeen - 3-26-09 Day Seventeen - 3-26-09
He's also doing so much better closing his mouth. Today, his speech therapist was giving me tips on how to feed him. He's gotten much better with his lip closure and I'm learning to be patient while feeding him. Instead of shoveling his food in his mouth, I need to wait for him to take the food off of the spoon by himself. This is possible now because he's actually closing his mouth on the spoon! It's so cool. Who knew eating was so fascinating?! Speech therapy is definitely paying off and I can tell his mouth muscles are less sensitive and stronger. So exciting!
Day Seventeen - 3-26-09 Day Seventeen - 3-26-09
Elijah did well with PT today. He got to spend some time in the "cage", do more obstacle courses, and learn how to climb on and off of raised surfaces – to name a few things we did today. Today was also the last day we'll work with one of Elijah's PT's during our time here, so I thought I'd include a picture of Elijah and Lynn.
Day Seventeen - 3-26-09 Day Seventeen - 3-26-09
Elijah was so interested in the "cage" today. He wanted to touch the sides, so I got some funny pictures of him in "jail" – he's not really in a cage so don't send me to jail! I thought these two photos I snapped were hilarious, especially the one where his little eye is squished and he looks so destitute. The other one he looks like he's an animal in a zoo.
Day Seventeen - 3-26-09 Day Seventeen - 3-26-09
I'll leave you all with these pictures of Elijah…We were driving home this afternoon from therapy and Elijah had his hands so open. He was grabbing the book and trying to turn the pages by himself it seemed. Things ARE changing..

Photobucket Photobucket
Photobucket Photobucket
Do you see how open those hands are? Do you see how he's actually trying to grab the book?!!

Wednesday, March 25, 2009

Day Sixteen

Today was a great day. Elijah napped in the morning dive with grandpa and he seemed happy and refreshed and ready to work afterwards…Elijah that is, maybe not grandpa. Ha! J
Day Sixteen - 3-25-09

Elijah's PT set up an obstacle coarse and he spent a lot of time just walking around trying to maneuver over and around objects. He did great. He hardly fell down at all. He's falling much less than he did when we first got here.
Day Sixteen - 3-25-09 Day Sixteen - 3-25-09 Day Sixteen - 3-25-09 Day Sixteen - 3-25-09

The therapists were probably sick of hearing me talking about it, but I kept saying that I felt like something changed in Elijah yesterday. Ever since, he just seems to be a bit different to me. Like something new clicked in his brain. Like he's seeing better, looking up more, keeping his hands more open. I don't know, he just seems a little different – and I can't exactly put my finger on it. It's like he has brighter eyes again.

Day Sixteen - 3-25-09 Day Sixteen - 3-25-09
Today Elijah was playing with a toy quite efficiently with BOTH of his hands, which is pretty exciting. It was a steering wheel and he was using both of his hands to play with it. I feel some changes a brewin'.

Day Fifteen

Yesterday's therapy went well. Elijah seemed very contemplative – like he was thinking about everything and taking it all in.
Day Fifteen - 3-24-09 Day Fifteen - 3-24-09
I really feel like Elijah is using his hands more efficiently, which is really exciting. Yesterday he took a puzzle piece out of a puzzle all by himself. He's done that before, but with me guiding his hand to the knob on the puzzle piece. (And that's his LEFT hand in the photo by the way!)
Day Fifteen - 3-24-09
It was hilarious during lunch yesterday because Elijah was trying so hard to throw his spoon across the room. The little stinker! We all thought it was funny and actually a good thing. That's the thing about parenting a child with a brain injury – you rejoice over anything that a child would typically do…even if it's a bad thing. The great thing about throwing a spoon is that it takes a lot of work to do so. For one thing, he has to hold onto the spoon, which is a feat in and of itself. Then comes the hard part…he has to let go of the spoon at exactly the right time. Letting go when he wants to is harder for Elijah because his hands are so tight, but he would let go and drop it – just as you'd expect any toddler to react when they don't want to do something. Hilarious. We haven't gotten very far with spoon feeding because he doesn't want to do it. He wants me to feed him – it's so much easier that way, right? I keep telling him I won't be going on dates with him when he gets older, so he'd better learn how to feed himself!

Yesterday we also worked on Elijah's balance in the "Spider." He does really well. I'm sometimes amazed by Elijah's balance. So often it looks like he's going to topple over and he doesn't. Lately he's been walking sideways a lot. Usually when kids learn to walk, they walk along furniture for awhile before they brave the world of independent steps. Elijah skipped that step completely and went straight to walking. I'm thinking that he's just trying to figure out how to sidestep. That's my theory anyway.
Day Fifteen - 3-24-09 Day Fifteen - 3-24-09 Day Fifteen - 3-24-09
Yesterday was also the last day we will work with one of his speech therapists, Jenny. Look how well Elijah was grabbing a light-up toy yesterday with BOTH of his hands...
Day Fifteen - 3-24-09 Day Fifteen - 3-24-09 "Bye Jenny!"
I'm able to write this entry because Grandpa Dennis is in the chamber with Elijah. He's done all of the dives with Elijah so far this week, which means I've been able to have a bit of a break. It's been really nice.

After yesterday, we're 3/4 done with this adventure. I'm getting excited about going home and having our family reunited, but I'm even more excited about the changes I am witnessing in Elijah.

(I hope no one was worried that I didn't write last night. :) My good friends Jen and Beth came by for a visit last night and I went to bed after they went home. SO good to see you guys! Jen said she's an avid "Elijah fan" so, shout out to Jen! I wrote this this morning, but didn't have a chance to post it until now). Stay tuned for Day Sixteen later tonight...

Monday, March 23, 2009

Day Fourteen

It was back to the coal mines for us today. While it's hard to get back in the routine after having our relaxing four-day weekend, we realize that this experience will be over faster than we can blink. I'm trying to remind myself to make the most of it.

I feel much better and I'm glad that we decided to take a break. I was able to get some extra rest these past four days - AND with the help of some weights our PT lent us, Elijah has been sleeping much better at night. What a blessing that has been! He slept for twelve uninterrupted hours on Wednesday night and he's been sleeping better ever since. There has been more than one night I've woken up without a small child laying near (or on top of) me! It's been a long time since that's happened. It's been nice and I hope it continues.

Pics from the weekend...
Photobucket Weekend - 3-20-09

Pics from today...
Day Fourteen - 3-23-09 Day Fourteen - 3-23-09

We're on the downward stretch and Elijah keeps making improvements. He seems so much faster these days. I take my eyes off of him for a moment and he's playing in the dog food (Aunt Darlene moved the dog's water, so he's got to play with something, right?...) or walking down the hallway (sideways...) or licking the floor (we're working on that one). He's a silly boy and I love it.

Wednesday, March 18, 2009

Day Thirteen

I'm so tired.

Yes, I think that about sums it up. Elijah was up from 10 pm until 1 am last night. We're both exhausted and now I'm fighting off some sort of illness. It might be partially allergy related, but I think I'm just so run down that I feel quite out of sorts. Imagine, therefore, how Elijah feels. He's the one who is working a full-time job after all…
Day Thirteen - 3-18-09 Day Thirteen - 3-18-09

This morning, we tried HBOT again and everything went well. We dove at a lower pressure (1.3 ATA) with no added oxygen (room air) just to be safe. I went in with him, but I wasn't able to complete the dive. We were taking it slowly because I am feeling a bit under the weather, but my ear started to hurt. I guess I'm more congested than I realized. So, I got out of the chamber and Elijah's soon-to-be-auntie Karen (who is here helping me this week) was able to take her first "trip" in the chamber with Elijah instead. They did well in there. Elijah didn't nap and didn't do any startles.

Today I tried to nap while Elijah was doing his physical therapy. Elijah's PT suggested that I go lay on a couch in one of their unoccupied therapy rooms and I took her up on the offer. I didn't really feel like I got any sleep, but at least I was resting. I don't think I would've been able to remain upright all day today.
Day Thirteen - 3-18-09 Photobucket
I honestly have no idea how Elijah is still functioning. We come home from therapy and he still wants to play. This evening, he walked to the door, looked out the window and started crying, flapping his arms, and walking around in frustration, as if to say, "I want to go outside and no one will take me!" So, we went outside. He's such a fun little boy – wanting to play outside, just as any child would. Today he also got caught playing in the dog's water dish. It was so funny. He disappeared from my sight for a moment and I found him casually sitting by the water dish, happily splashing in the water with his hands. It's such age appropriate, typical behavior and it makes me smile.

Anyway, we've decided to take the next two days off from physical therapy to allow Elijah (and me) to get some extra rest. I just don't think working him so hard is good for him right now. He's grumpy and not very cooperative in therapy, which obviously means he's not gaining much from it right now (the poor kid only had 7.5 hours of sleep last night!). It's possible he's not feeling so well either, because I'm not showing many outward signs that I'm not feeling well - except the deeper voice I've acquired and um, I don't know if Elijah's voice is any deeper. :) I feel like we're doing too much and need to slow down. We'll get a four day weekend and then we'll start back up next week. We've extended our stay a few more days, but my mommy gut says that the both of us need a little break.

Sometimes it's so hard to know what to do for your child. Yes, this whole experience is draining and hard, but I am so glad that we are here. I have such an urge to be back home, to be able to have our little family all together again, so it's hard to make this experience take even longer. But I know that we need this four-day break even if it extends our stay a bit. I keep going over the startles in my mind and the more I think about it, the more I think that they're not seizures, but rather a result of him being uncomfortable and exhausted. My hope is that I'm right.

We will be meeting with the hyperbaric doctor tomorrow to have him check out Elijah and may do one dive tomorrow if the doc thinks it's okay. Otherwise, I plan on spending the day sleeping – well, sleeping as much as Elijah will allow.

Good night everyone. Thank you so much for the support and prayers. Even though I'm not feeling so well and I'm exhausted I feel like I am being carried by something stronger than myself. Usually if I were this exhausted, I'd be incapacitated – I'm sure I am being sustained by your prayers (and Elijah is as well). Thanks for reading.

Tuesday, March 17, 2009

Day Twelve

It's been a MUCH better day.

Day Twelve - 3-17-09 Day Twelve - 3-17-09
Elijah got eleven hours of sleep last night (only woke up once to snuggle – and then slept with mommy). We took the day off from the HBOT treatments, so the day was a lot more relaxed. Elijah got to take a nap at our temporary home with me (instead of in the chamber) and I didn't notice anything strange when he woke up from him nap.

So here's the deal…We've been talking to doctors to get their opinion about the startles. When I say "we", I really mean Andy. J He's called our neurologist and talked with our pediatrician and HBOT doctor. The consensus seems to be that while the startles could be seizures, they're probably not. The only way to know for sure is to have an EEG and it would be incredibly difficult (I think) to get Elijah to do the same thing while having an EEG.

One of the reasons the docs don't seem to be too concerned is that nothing is happening while Elijah is awake. He doesn't act strange at all after getting out of the chamber, he doesn't seem disoriented and he is acting like his normal happy-go-lucky self. Our plan is to start again with HBOT tomorrow, but slowly at a lower pressure. I don't feel that HBOT is hurting Elijah in any way. I go back and forth over whether or not I think what happened were seizures. Right now I'm thinking they're not, but even if they were seizures it's possible that it's just a result of his brain waking up, which is possibly not so bad after all. Maybe I'm just trying to make myself feel better.

We're always going to worry about seizures, because Elijah had them at birth, but I will continue to pray and hope that he never has them again. I know that God is looking out for us and will work everything out for the good.

Day Twelve - 3-17-09 Day Twelve - 3-17-09
BIG news from therapy today – Elijah drank from a straw! I am so, so excited. We've been working on this in speech therapy for the past two weeks and he just didn't understand that he needed to put his lips around the straw to drink – forget about sucking from the straw. Today, he not only got his lips around the straw, but he was able to suck and get something to drink. It'll take some more practice, but I can't help but envision my little guy grab a little cup and give himself a drink on his own. We will get there. But today, I got tears of joy in my eyes seeing him so proud of himself over his accomplishment of getting some apple juice out of a straw. What an amazing little boy we have.

Thanks so much for the comments, thoughts, and prayers everyone. It is so appreciated; I wish I had more time to talk to everyone. Today was a MUCH better day – tears of joy instead of tears of fear. Please continue to pray for our health and safety. Elijah's runny nose from yesterday seems to be gone, but now I'm sniffling. Thanks again.

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