Hope Springs Family

Learning to Live with Tuberous Sclerosis

Surgery Day Coming Soon

So, I’m not good with updates, but this is a big one.

Next Monday G is going in for brain surgery. We truly believe this is what we should be doing, but it’s still scary. They are going to remove the largest and most central tuber in his brain, as well as doing an anterior (front portion) corpus callosotomy (disconnecting the 2 halves of the brain). The Drs. believe this is what’s necessary to stop his seizures. We’re pretty much at the end of what can be done pharmacologically. He’s on 4 meds, and still has seizures daily.

We would like to ask that you pray for G, his Drs., and us during this week and next, especially. We want G to come through better than he was when he went in. We’ve been told that he has a 70% chance of being seizure free after this surgery. We hope that they’re right.

Thank you!

3 months ago…

… LB (henceforth called G) was starting to sit up on his own.  He has since learned to crawl, walk, and is starting to push/pull himself up into standing.  We finally called ECI  to come out and evaluate, not if, but how much help he qualified for.  Turns out, he qualified for a lot.  So now we have an occupational therapist, speech therapist, and an early intervention specialist each coming to the house twice a month.  This is in addition to the physical therapy he gets at a clinic every week.  Everyday he is getting steadier on his feet.  His therapists are all very pleased at the progress they see when they visit.  So far, he has exceeded their expectations each time!

I won an iPad2 in a sweepstakes after Christmas (HUGE answer to prayer!!), so I’ve been finding apps to help him use his hands (working!), communicate (not yet), and help his cognitive development (again, not yet).  I’ve also found apps for BB (henceforth called J) to play with to use as a supplement to school, as well as general games to play.  As we use the iPad more, I’m hoping that Gabriel will improve his motor skills enough to tap more precisely and then we can get him to use the communication apps better.

Now that G is mobile, we really can’t leave him alone for a minute.  He can move all over the house, and yet can have a seizure at any time.  There have been times that he had a seizure while on the move and would have really smacked into the ground hard if we hadn’t been there to break his fall.  On the other hand, he also can’t fall properly.  He stiffens up so much to maintain his balance that when he loses it, he just falls over like a felled tree.  So, we can’t just let him practice his walking by himself.  One of us always has to be in arms reach to catch him if he starts to tip over.  It’s only been in the last couple of weeks that he has started to bend at the waist and fall on his bottom.  At first, he would scream and cry when he landed on his bottom, but after a while it changed into just a cry.  We’ve about determined that it scared him at first, but now it just hurts his pride.  He really wants to walk, and gets upset if he can’t.

I’ve got to go sing to a little guy now.  I’ll try to do better about writing posts.

Sitting like a big boy!

So LB has been trying his hardest to sit himself back up on his own.  His problem though is that he tries to muscle his way back up, rather than use his hands to help support himself.  It’s really funny to watch. 🙂  He also REALLY wants to play with his big brother.  Any time BB is playing, LB wants to be there.  BB was playing Wii Active Life Explorer the other day, and LB had the best time “jumping” when BB jumped.  BB and Noni were upstairs playing trains last week, and LB was in his walker and kept bumping into the bottom stair and fussing.  He heard them upstairs and wanted to participate, too!!  Once Noni came down and got him, he was happy as a clam.  He loves it when his brother plays with him.  It usually involves BB playing with LB’s toys in front of LB, but they both seem to enjoy it.

BB & LB Playing TinkerToys with Daddy

The cutest thing happened late last week.  LB sat in BB’s Elmo chair just like a big boy for the longest time.  It was probably only 10-15 minutes, but in LB time, that’s a REALLY long time!  He was sooooo proud of himself.  I took a lot of pictures.  BB even brought him his blanket.  BB likes to sit on the couch with his blanket, so he figured his brother would like it, too.  It was sweet.  LB then reached down to his feet to pick up the blanket.  We made a lot of strides that day on physical development.

Look what I can do!

See...I got my blanky

I love my blanky!!

I do have a request of any of you with little kids in your lives.  We are having trouble coming up with ideas of things to get LB for Christmas.  Since he doesn’t have good use of his hands, that rules out so many toys.  His PT recommended toys that have “simple cause and effect.”  She couldn’t think of any specific examples, but gave a description of easy to “accidentally” press buttons with sensitive action/electronics that would have a visual or audio reward.  The only thing I came up with that fits that description is this drum.  Do you have any ideas for things we can get LB for Christmas?  Maybe items your own kids had that had a sensitive action or something that was very easy to play with but didn’t require holding on to anything?  Although, BB likes to “help” LB play with his toys, so maybe that could work in some situations.  I will say that he loves high contrast, bright colors, faces, and anything that is really soft.  Any help you can give will be greatly appreciated!!

Here we go

Well, I’ve decided that if I’m ever going to get this blog going, I need to just start posting about our days, and try adding details of our history later.

So, to that end…

Little Brother (LB) had physical therapy today. He’s been trying to sit up (from laying down) on his own all week. He can get part of the way up, but then falls back down. That’s one of the things we worked on today in therapy. We’re also still trying to get him to bear more weight through his hands in order that he can *hopefully* start crawling. He’ll get up on all fours and start rocking, but still leans too much to the back. Ms. T, his PT, was impressed with how much he had improved this past week, and what he was trying to do on his own.

Therapy is never ending. Each letter on the wall had a different texture.

After we got home, he was tooling around in his walker chasing the dogs, as usual. At one point, he found Kassie (the leader and oldest) on her chair and got up right next to her. Then, lo and behold, he reaches out with his left hand and starts petting her on the head and giggling!! She was very patient and put up with it for about 4 strokes then decided she’d had enough and hopped down and went to another room. Now, this may not seem like any big deal, but it is for him!!! He is 13 months old, has delayed development, appears to have a weakness in his arms (well, maybe not a weakness exactly, but a disconnect between his brain and his arms/hands), and seems to have sensory issues with his hands (at least, maybe other limbs, too). He has only recently begun reaching for anything, and even then, it’s usually a single swipe in the general direction of what he was looking at. To have him make contact with what he was aiming for, plus do it multiple times in a row, is nothing short of incredible! He was so proud of himself as he should have been.

On to Big Brother (BB)…He’s been a pistol at times lately, but I hear that goes with the territory of being 4. He’s also been extremely cute and loving. I guess it’s just an age of extremes. Today he was playing with Daddy and came up with a new game. Daddy was practicing his juggling while BB was watching. BB would say “3, 2, 1, Go!!” and that was Daddy’s cue to begin juggling. Whenever Daddy would drop a beanbag, BB would say “Game Over!” Well, one time Daddy said “3, 2, 1, Go!” and started juggling, to which BB replied “No, Daddy!!! That’s my line!!” I have no idea where he got that from, but Noni and I just started cracking up when we heard it. It was cute.

Hello world!

Well, I’ve finally decided to enter the world of blogging.  Please be patient with me while I figure this whole thing out.

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