I don't know

Liam had a weight check last week. We still keep an eye on his weight to make sure he's getting everything he needs nutritionally and that he's still gaining. I was thrilled to see that he had FINALLY made it up and over the 25 lb mark. I think he was 25 lbs 4 ounces. Or somewhere close. lol And eating about 31 ounces of food a day.

He's steadily gaining now, albeit it ever so slowly. He is averaged about 4 ounces a month. It's not huge, but at least he is finally gaining consistently now. I knew with him no longer vomiting that we should see him finally over 25 lbs.

I really like our pediatrician. She is very sweet and she loves to talk to and watch Liam in the room. Liam always gets very hyper when he's on the table. I think it's the crinkly paper he lays on. Whatever it is, by the time Dr. Kid gets in there, he's flailing like crazy and laughing his heart out. Which always gets Dr. Kid laughing. She usually spends extra time with us just to be able to hang out with Liam.

I pulled him to a sit so she could see how he still has a head lag. But then I showed her what we do to his back to try to prompt him to pick his head up when in sitting. And then she said, "I've never seen a kid with CP do that. Normally they don't move like that." I'm thinking, 'Yeah I've heard!' But it was the first time our ped had said something about Liam being unusual. We've heard it before. A LOT. But not from her.

I talked to her about maybe seeing a new neurologist. Remember my post about our current neuro (who I haven't been back to see since.)? I told her I didn't want to see her again and that maybe we could see someone else who actually might be helpful to me. She put in a referral to the peds neuro department at Chapel Hill. We already have an appointment set up for November. I'm thinking they will want a new MRI since he hasn't had one since he was 3 months old. But, we'll see. I hate having to drive 2 1/2 hours to go, but it will be good to talk to someone else about Liam's bizarre movements or lack of movements.

We talked again with Liam's PT this past week and she said what we've always still felt, that Liam doesn't seem to fit the athetoid CP diagnosis.

I don't think seeing a new neuro is going to change much, but it would be nice to have a positive helpful person on Liam's staff. One with answers would be good too.

Twinless twin

I don't know that I'll ever be able to get over the fact that I have twins and Liam is twinless.

When we were planning for Liam and Brady it was one of the most fun and exciting times of our lives. And just like with any pregnancy, you set up these hopes and dreams and ideas only to see them all come crashing down around you. It's hard to recover from it.

Getting over the loss of a child is unique to every person. We had to learn to cope after Kyle Ann died. She was supposed to have been my last pregnancy. And it wasn't easy for me to do. But I quickly got pregnant with the boys and it definitely took a lot of the pain away. I had something new to look forward to and help ease the loss.

But now, there hasn't been anything to take the pain away other than time. The pain has gotten manageable. I can be out in public and see twins and not have to veer off in the other direction, but it still sends something shocking through me to see it. I get jealous. They have what I was supposed to have. Two healthy beautiful children. And if people around me talk about twins, it really gets to me, very much. I should have my boys. And I want everyone to know that I have twins too. They just aren't together right now.

I greatly fear the day that someone around me gets pregnant with twins. I am not sure how I will be able to handle it. I imagine that my flight response will kick in and I'll need to keep a lot of distance.

There are support groups for moms and kids of twinless twins. It is a recognized issue, the loss of a twin, and one that doesn't heal easy.

SNAFU

I love the word snafu.

Because I think it describes my life absolutely perfectly. =)

It means 'situation normal, all f#%@ed up'.
That essentially your normal situation is all fowled up.

I think that's the norm lately.

Friday Liam was running low on formula. I knew we had enough to get us through into Monday but I didn't want to risk not getting it ordered on time.

I called and placed the order and they usually get it out the next day. Because this was Friday I knew it would be delivered on Monday.

But, Monday came and went with no formula delivery. They had called me earlier to tell me that they didn't have any of Liam's formula in and that they would have it on Tues. They wanted to supplement that Monday and Tuesday with his old formula until the current one came in. I instantly started cringing because Liam has had a great thing going with the Nestle Compleat. He has not vomited in months, has had no signs of reflux and he has been stooling great! I know how if you just up and change food it can make you sick.

And it did.

By Monday night after his 2nd feeding of Boost, he was vomiting. He did tolerate his night time feed, but he was refluxing that morning and he vomited several times throughout the day.

By 4:30 I was in a state. He needed to be back on Compleat and fast. I called the company and they said it was out for delivery and it should be here by 6. We got it at 5:30. So, in all, Liam had 1 1/2 days on Boost. Just enough to completely mess him up.

It is now Thursday and we are just now starting to get his stomach back under control. He didn't even stool yesterday. And he was refluxing again this morning.

I called back to our medical supply company today and told them everything that had happened. Vanishing vomit was a battle that I thought would never be won and it brought tears to my eyes to see him doing it again. The associate was very helpful and said that they could drop ship Liam's formula on the 1st and 15th of every month so we don't ever have to go though this again.

Snafu.

Special Tomato Sitter

With the money we received from the Easter Seals we were also able to purchase a Special Tomato Sitter for Liam. Because Liam is now too big for his high chair and too big for our Tumbleform seat (which has been on loan from our early intervention program) we needed something to be able to put Liam in while in the house. Not only for feeding him but for playtime as well.

I looked into the prices of the Tumbleform seats and came across the Special Tomato Sitter at adaptivemall.com. It was cheaper and it had more benefits than the Tumbleform seat.

Not only does the sitter come with a nice wooden base, it can also be fit with wheels to allow us to move the chair easier.

The sitter has a better form for support (it's nice and soft) that gives lateral support and proper positioning for his head as he grows. It also has a nice H harness for his chest that comes with a protector over the straps that you can get in purple or brown. The same material is used to cover the strap that goes between his legs to keep his hips and butt in place.

And what really sold it for me was the option that I could take the seat off of the wooden base and strap it to the kitchen chair. I can use it for a high chair at the table or for him to sit at the table and have a large area to play. 

 And the final feature that that I love it is that I could use it in the Special Tomato Jogger!  

 He sits a lot better in the jogger by having the extra support. He sits in there nice and cozy and with the harness in place he doesn't drop his head like he did without the sitter. The sitter straps across the back of the stroller just like it does when you put it in a kitchen chair.The only problem with having the sitter in the jogger is that you can't fold the jogger with it in it. They do make a Tomato positioner that can be used and folded in the jogger but we went with the sitter because it had so many options for Liam.

At the beach!

I haven't taken Liam to the beach before because, well, it's just a pain to think about doing.

But, some friends of ours had a place at the beach recently and we decided to take go ahead and take Liam for the first time.

And he loved it.

You can see him smiling big in this photo. When the waves would come in he would laugh and laugh.

 After a little while, Liam started fussing and nothing I did would calm him down. We tried the pool at the condo, but the mosquitoes were all over him. And at this time it was starting to get pretty dark. And because he now has a 'fear' of the dark, I think that sent him over the edge. 
Luckily, because we were with our friends, I was able to take him inside and lay him in the tub to get all the sand off. After getting all cleaned up, we went into the living room, with all the lights on, and he was happy as could be.
I was excited to finally get Liam to the beach but it reinforced my previous thought that it's an awful lot of trouble. : )

Special Tomato

     Liam is starting to, finally, outgrow his Eddie Bauer combo stroller we got for him when he was just getting ready to come home from the NICU. Of course, we had no idea of the complications Liam would face back then and a regular stroller has served us well over the last 2 1/2 years. But, now that Liam is almost 3, his head is approaching the top of his stroller back and the seat does not provide enough support for Liam to give him proper sitting positions. He will be getting a 'wheelchair' stroller soon but I wanted something a bit more portable and lightweight to have around as well. I decided to try Liam in the Special Tomato Jogger. It's designed for kids with mild to moderate issues. While Liam falls into the more than moderate category, I figured we could use this stroller anyway. Plus, I am hoping it will motivate me to continue running. =)

I was really excited to get the jogger this past week. New stuff is always fun.

The jogger came pretty much fully assembled. All I had to do was add the wheels. While I worked on getting the wheels on, Liam played in the box.

After about 15 minutes, we were ready for our first jog!

Liam seems to really like it. For now, I am using toddler coddler pillows on the sides for extra support. And that's it! What I like about the Special Tomato strollers is that the back is fully adjustable to any degree simply by using a strap on the back. You can loosen it or tighten it to fit any angle. And, this jogger will fit Liam until he's 110 lbs! And I like how narrow the frame is because it puts Liam's arms in better position for him to use them.

We bought ours from adaptivemall.com. They were having a sale on the jogger in July along with a code to get the necessities bag you see underneath the stroller for free. And I have to say that this stroller wouldn't have been possible for us if not for The Easter Seals! They give up to $700 a year for individuals with disabilities that have exhausted their insurance and help us pay for equipment that we would not receive otherwise.  Liam has exhausted his insurance already for the year and with out The Easter Seals, this stroller wouldn't have been possible.

Things I now know: #113

I have learned that in times of crisis, some of your friends have no idea what to do and they will eventually fall by the side in the months and years it takes you to recover. And as sure as that will happen, you will also have the people you least expect step up to the plate to stick with you through all the painful mess and help you come out better on the other side.

Communicating through the tears.

I have always played a game out of turning the lights on and off for Liam. He will laugh when I turn them off as I yell "Lights off!" or turn them on and yell "Lights on!". Just like with typical kids, he learns by doing and seeing. I just have to do most of the doing for Liam. He also knows that when the lights go out it's usually time for bed.

When nap time or night time rolls around and it's time for Liam to go to sleep, I always put him on my chest to fall asleep. That is the only time I place him in that position because if I just try to cuddle with him or put him in his bed, he will lay there forever looking around, kicking and moving, and won't go to sleep. But, once he's on my chest he's usually asleep within minutes. He knows what time it is when I do that.

Well, Liam has decided lately that he doesn't like being put to sleep anymore (unless he's really, really tired). He will cry if he doesn't want to go down for his nap as soon as I put him on my chest. It's like he doesn't want to miss out on all the fun!

And last night all of the family was in the living room watching Alice in Wonderland when I turned the lights off. Liam thought it was the signal that he had to go to bed and he started crying. We all felt so bad for him. His cry was pitiful! He turns his lips down and gets that sad, pouty lip, face. We turned the lights back on and he was all right with the world again.

It's fun to see Liam communicating through his cries to try and tell us what he wants, or in this case, doesn't want. And it must be frustrating to know what he wants and not be able to tell us.

Reflections

 We were told not to use mirrors for vision play for Liam because it can confuse him being able to see two images at once. With his vision impairment generating from the connections in the brain, it's a guess right now as to how and what he sees. And since Liam has had a hard time seeing faces I haven't bothered too much with showing him a mirror.

At Liam's therapy clinic all the rooms have one wall that is floor to length mirrors.  I have put Liam in front of them before, right up to the glass, to see what he would do. Once in a while I would get a spark of interest but not much more than that.

But, this past week, I put Liam in front of the mirror and asked him who the handsome boy was looking back at him and he got very interested. So much so that he was trying to roll into the mirror and was laughing at himself! When we moved to our next therapy room I did they same thing, put him in front of the mirror, and he got even more excited.  It seems that Liam's vision has gotten better and not only can he see himself in the mirror, he is able to understand what he sees through it!

So, when we got home, I showed the kids how Liam was reacting to himself and put him in front of our mirror. This is what he does:

I can't believe he is finally seeing himself!

j-ustm-e.com

     If you've been to my blog as of late, and a few hundred of you check in each day it seems, then you might have noticed that the web address for J-ust M-e has changed to just that: j-ustm-e.com! 

So, instead of having to type in the older long addy that I named all those years ago, you can just type in the title of the blog to get you here. And if you still use the old addy, it will redirect you here too!

Things I now know: #61

That mom's of kids with special needs want the exact same things for their kids that every mom does for their typical kids:

We want them to be happy and know that they are loved beyond measure, that they are safe and secure...

and

That their smile lights up our hearts and we couldn't imagine our lives without them.

Things I now know.

Thing #54 I've learned as a special needs parent:

If the g-tube is clogged, no matter how hard you try to force water through the tube and no matter how hard you keep your hand on the cap, the cap will fly off and water will hit you in the face.

Every time.

What a Wednesday looks like...

Liam starts out with speech therapy:

He sits in the Tumbleform chair where we work on teaching him commands. In front of him today was this bright colorful drum. We asked him to bang on it and he did it over and over. We then switched arms and brought the drum to midline where he has the hardest time using his arms. Other than midline, Liam hit the drum every time we asked. He did so good today that he passed every goal she set for him!!

Next he moved on to physical therapy where we put the electrical stim on his pecs and biceps. Because Liam is trying to roll independently from his back to his tummy, we are trying to help him use his arm better. His arm acts like an anchor and when he tries to roll it stays back behind him and prevents him from getting over. When we put the stim on, he can actually feel and respond to his muscles better and he will roll with his arm in front of him instead of behind.


We do a lot of work on the ball where he can feel himself in space better than on the floor. It also gives him a bouncy place to help him work easier.


You can see the stim pads on his arms. We also use them on his back to help him feel his back muscles in order to help him get strength in his trunk.


Next we moved to occupational therapy where today we focused solely on small muscle movements with his head and arms. Again, all while using the ball. By the end of OT today, Liam was done. It was the first time that Heidi had seen Liam get upset!


And then this was Liam ten minutes into our 45 minute drive home.

No more stinky stoma

Liam received his g-tube back on January 23rd. Ever since he got it he has always leaked a bit of stomach acid from the stoma (fancy medical word for the hole in his abdomen that the tube is inserted through).

Many times the leakage was so bad that it would crust over and the tube would stick to his skin. A simple cleaning of the site with equal parts water and hydrogen peroxide would get it clean. After talking to some of my g-tube mommy friends, I was told to put gauze underneath the g-tube and on top of his skin in order to keep the tube raised a bit and allow the gauze to absorb the leaks. I would usually have to exchange the gauze out twice a day.

After a few months I was able to only use one gauze per day but would still have to clean the crusty gunk out.

Last week Liam had one of his regularly scheduled PT appointments with Janelle, who does cranial sacral therapy. Now, a lot of people don't believe in CST, and I can understand that. It does sound all hokey, but let me tell you what happened at this session:

Janelle decided to do a thorough myofacial release on Liam throughout his abdomen. She worked at his chest, his ribs, his belly and all around his g-tube. Liam loves the releases, they relax him, and sometimes it makes him poop (not that he has a problem with doing that, it just goes to show how the releases work for him). This was the first time his belly had been worked on since the tube. When she was done, we moved on to therapy and that was that. I didn't think about the releases after the session was over.

After a few days I noticed I didn't have to clean his stoma like usual. It wasn't leaking like before. I was still using gauze once a day but it was staying noticeably whiter.

Then yesterday I noticed I hadn't had to put any gauze under it in a week! And I realized that not only were we not using gauze, I wasn't have to clean it like before either. It was no longer getting crusty. Liam's tube site is staying dry, clean, and granulation tissue free. For the first time, the bottom side of the stoma is not pink and irritated looking.

I was thinking about how good his stoma looked and wondering how come it had all of a sudden healed so well when I remembered Janelle recently doing all of the myofacial work around it. I believe all the work she did on his abdomen has healed up the area finally and allowed Liam's stoma to stay healthy and dry. We've gone 6 months of having to have gauze on it at all times to having to need nothing now following the CST!

It would be an awfully strange coincidence otherwise.

Things to do

Sometimes you just get burned out.

If I were to schedule all of Liam's activities that are needed to enhance, entertain or encourage movement and activity for him, I would have a packed day.

And ideally, I should do this.

But life gets in the way.

I have other children to entertain, encourage and enhance with homeschooling, sports and family time.

So, some activities get left of the 'to do' list.

I can have objects right in front of me and not even see them or use them for him in months.

Take for instance his wedge:

I haven't put him on it in ages.

Generally, he won't hold his head up for very long in it anyway.

But, I got it out this past week and have been putting him in it again. Really it's just for something different to do.

But I found out that if I put Liam in it and ask him if he wants me to sing to him, he gets all grinny faced like he does when he's excited and he holds his head up high.

It's hilarious.

I will sing his favorites, 'The Itsy Bisty Spider' and 'Wheels on the Bus' and I have his undivided attention and head control for the entire time.

I guess I'll put it back on the list for a while. : )