David and his iPad

Since we got the iPad for David, I've been following this blog:  http://babieswithipads.blogspot.com/  It's been my go-to source for information on using an iPad therapeutically.  She recently asked for stories and pictures about kids using their iPads.  So I wrote up some thoughts about how we're using the iPad with David and how I feel about it right now:

 My son David is four years old. He’s got no syndrome the doctors can name, but he has a bone disease and developmental delays that have him operating at about a one year old level. He can babble and make a few signs. He’s got seizure disorder and finding the right amount of the right med to control it has been very frustrating lately. So I used to be able to say he could sit, crawl, and pull to a kneel, but we don’t see much of that any more. Now he sits with support and rolls. Here’s a look at how he uses the iPad.


We use the iAssist app to let David choose from a field of four choices. He chooses between 3 songs and a “stop” icon. (He’s never picked stop. David is a music machine.) We’ve set up a field of four that lets David pick between stand, clap hands, make monkey noises, and stop. iAssist isn’t the best app in the world, but I can’t bring myself to buy ProLoQuo2Go when I’m not sure what level he can use it at right now.

We use the many musical apps to teach “When I touch this, things happen”. His favorites are Elmo’s Monster Maker, Itsy Bitsy Spider, Look Baby! and Sparkabilities.

David really likes the iPad and the sound of it has him searching to find it. This has prompted several other uses for the iPad. We use it as bait to get him to move. We use it as a distraction in medical situations. David tolerates a blood draw with much less fuss when he’s playing the iPad at the same time. He’ll wait patiently in a waiting room with the iPad. During a weeklong hospital stay the iPad was an incredible distraction and entertainment. When the nurses needed to access his IV, I’d hold the iPad on the other side of the bed and he’d play with it without seeming to notice the nurses messing with his other arm.

Which brings me to another use for the iPad, though not therapeutic. I used the iPad when he was asleep in the hospital. I checked email and kept everyone up to date with short blog posts. I checked the news and weather. I just relaxed with games. We also have found our elementary school aged kids get a lot of use from it. Spelldown Spelling Bee has ended complaints about practicing spelling words and we use it to study vocabulary for tests, too. There are tons of basic math programs, but Pop Math and Math Ninja are two favorites for learning math facts.

We’re working to get David’s iPad into his public school preschool class room and we’re meeting some resistance. Every thing is moving slower than molasses. We bought the iPad and are willing to sign papers to let them use it at school. The therapists directly working with David seem interested, but higher up the food chain they are hesitating. I think it has to do with fears that if this device is proven good for David that they’ll be expected to buy one for him or another child. And they already have an inventory of AAC devices, one of which is working well for him.

My biggest frustration is in feeling alone in using the iPad with David. I’m coming to realize the answer to this is probably to hire a private therapist to work with us on it. I feel like there’s so much potential that we’re not using. I see the way David moves his arm or his hand and I think it’s significant, but I’d like a professional opinion on what we might do to help him use it better. I just imagine that someone with a head full of OT and communication ideas would watch him use the iPad and see infinite ways it could be used in therapy and to communicate. Or maybe they’d watch him and say we’re over-reaching for where he is right now. I doubt that, but I don’t know. I was hoping the school therapists would be that source of ideas, but I think their hands are tied.

And while I was busy writing that up, I left the iPad propped up next to David.  I could hear him playing with it in the next room.  Tony called me in.  I took another picture. He's been sitting for 15 minutes playing with the iPad.  Sitting.  We haven't seen him do this in about 8 weeks.  So, yeah, I'm a fan of the iPad!

Finished Quilt!

I just realized that I never posted pictures of my (long finished) quilt.  So here goes.

 Above is a picture where you can see the backing fall leaves material and you can also see a bit of the stitch in the ditch type quilting I did.

This one shows off the cool stitching I used to tack down the binding.  You can't see it in the picture on the front, but you can on the back.

After I finished the fall quilt, I tried some free motion quilting with a blanket just made of two pieces of flannel.  You can see it below.

 The close up shows another cool stitching the binding down choice, along with my first attempts at free motion.  It was much more fun than it was pretty, but I'm up for another try!

 Just another detailed look.

I've put my good sewing machine away while I help the girls make curtains for their rooms.  This is turning out to require a lot more patience than I have.  I'll get some pictures of those projects next time we work on them.

While I Wasn't Quilting...

So, it's absolutely killing me that my quilt is sitting half finished.  Maybe this week I'll get to it.  Here's what I've been up to:

This is Gladys' room (with walkin closet) and dresser.  Before, with pale purple walls (white in the closet).

and after with "Gem Turquoise on the walls and closet, slightly darker shade on the dresser.

Even though it went quicker than I thought, it still kept me from quilting.  Gladys' birthday is Wednesday, and I'd told her long ago that her room was next on my list to paint and she picked her colors.  So, now it's done!

I've gotten her new sheets (light turquoise) for her birthday and would like to get matching curtains, too.  I've looked for curtains and I'm just not finding exactly what I want.  So now I'm thinking about making them.  Crazy.  And it would keep me from my quilt.  Hmmm.  What to do.

Day 5 - The Top is Done

Hassani was busy at soccer today, and let's face it, that means I had time to sew.  I got the blocks pieced together.  You can see it in the picture above, along with the possible border materials.  That's right, I changed my mind.  Once I had it pieced together and held the leaves material next to it, I decided that the combo would be way to busy.  Since I'm trying hard to avoid the "Autumn Threw Up" feel with this quilt, I did a quick rearrange and recalculate.  The excel spreadsheet I'd used to plan the orginal pattern came in very handy.  I used to see what sizes of borders I could make with the existing material. I considered a couple differnt combos and settled on a near-solid-red border on the inside:

Then next border is made of the red patterned material.  I got it cut and sewed on, but ran out of time before I could iron and take a picture.  So, the quilt top is done - picture coming soon.  I also cut and ironed the binding, which is the same near-solid-red material.  Next up, the quilt back.  It will either be all all leaves, or perhaps leaves with a strip of colors from the front.  So many possibilities!

However, there's a competing project on the horizon... Gladys' room is up to be painted this week and may interrupt the quilt for a few days.

Day 4 - Late Night

After everyone else went to bed, I stayed up and did some sewing!  I got all the rows pieced and then started sewing them to each other.  So here is the quilt top, about 3/4 done.

Day 4 - A Couple More Rows

I've got the 4 different rows in the quilt laid out.  They just repeat for the rest of the quilt.  I also got all the rest of the first rows laid out - these are the ones the spacing was messed up on, so I tried to sew them a little tighter.  I'm hoping to get more time tonight and see how far I can get.

Day 4

I got a few minutes to quilt today and mangaed to put together the first two rows.  Overall, it's really good.  I've got two issues, though. 

1.)  the blocks on my top row weren't exactly even.  The reds were a little bigger than the pieced blocks.  The second row was fine, so I'm guessing the pieced blocks on the top row are a little small.  I double seamed a few places on the top row, making the seam a little bigger than 1/4" in order to make them line up.  I'm going to think about this when I put in the next rows.

2.) I find myself wishing my red blocks were more solid red and less print.  I think it will be better when I get the whole thing together.  This is what happens when I change my pattern after buying my material.  The red print would make and AWESOME border for this quilt.  A little less awesome as a block.  I think the red wavy/near solid red material I'm going to use as a border would have made better blocks, but I didn't have enough of it, and wasn't willing to trek back to Lawrence to buy more.  So, we shall see.

While I was sewing today I stopped to take a couple pictures of one of my favorite features of my new sewing machine.  If you look at the silver foot on the machine, you can see a black edge on the right side.  This edge limits how far you can push the material past the edge of the foot, making a perfect 1/4" seam.  I used to use a post it note stuck to my machine.  This makes consistent seams so easy!

This picture shows my other favorite feature.  The top button pictured is the cut thread button.  That's right, my machine cuts the threads at the touch of a button.  It still gives me a little thrill every time I push it!  Many, many, many thanks to my mom for finding this machine and buying it for me for my birthday, Christmas, and occasions for years to come!  Mom, I think of you every time I use it, and I can't wait till we can sew together!

Days 2 & 3 - Blocks Cut, Old Quilt Patched

So, after I posted about Days 1 & 2, I actually did some more sewing and cutting and ended up with all my strip sets sewn together and cut into blocks.

Then, after cutting them out, I still wanted to quilt more.  But it was late, and I knew my next step involved laying the whole quilt out for a preview look and I wasn't ready to do that.  So I did a little quilt repair instead.

I started this quilt with my first sewing machine over 10 years ago.  I never did finish it.  I cut the blocks, or maybe just sewed the strip sets and stalled out.  So my mom finished it as a gift to me a couple years ago.  I love it!  Love, love, love this quilt!  Very special because of the team work between me and my mom, I think.  Anyway, it's seen a LOT of hard use.  It's a "floor quilt" at my house.  That means we use it as a throw rug in the living room.  David lives, plays, leaks milk (and other fluids) on this blanket.  It probably gets washed at least twice per week.  And it shows.  In fact, it had a couple holes on the top that I think were just spots the material plain wore out from all the washing!  So I asked my mom to bring me any scrap material she had left over from it.   I freehand cut some "squares" and sewed them on as patches.  Regrettably, I was too lazy to change thread from the orange I was using for the fall quilt.  I thought it would blend.  I was wrong. 

It's amazing how much the fabric has faded.  I don't think I'll be able to keep up with the wear at this point, and I'm tempted to retire it from hard use. But I love seeing it every day.   I'll probably just keep using and patching it.

Oh, and Day 3 - nothing on the quilt.  But the kids were off school and we fit in a trip for David's lab work, a book store trip, lunch with Dad, the zoo, buyinging pumpkins, a candy run, and a family movie night.  Perhaps the quilt will get a little more attention today, Day 4.

Fall Quilt - Days 1 and 2

I'm making a fall quilt!  It's going to be a floor quilt to use in the living room where David hangs out.  When my mom and aunt were here and we went on a quilt shop hop, I picked up material to use with a pattern my aunt had. 

You can see the material in the picture above.  The yellows, oranges, and browns are fat quarters.  The red/yellow/orange print and the red material were bought for borders, and the leaves material for the backing.

But I don't like doing things by a pattern.  I like to make my own pattern.  I really like symmetry, too.  So, what started out as an easy quilt pattern with big blocks has turned into this:

I used an Excel spreadsheet to experiment with some different patterns.  I saw a picture of a quilt with this pattern and liked it, so I made up a pattern to match and for use with my materials.  The print that was supposed to go for a large border became the 83 red squares in the pattern at left.  The 12 fat quarters of red, orange, and yellows - all different prints - are used in rail fence sort of block.  The blocks are arranged to frame the red squares. 

I did a lot of math to figure out if I had enough material to make the pattern change.  In the end, the fat quarters and the red print are going in the middle of the quilt, as shown in my pattern.  I mapped out an arrangement that uses the fat quarters symmetrically throughout the quilt.  Using that layout, I only need 4 different rail fence blocks.  That simplified things for me.  The nearly solid red will now be a skinny inner border and binding.  The leaf material from the back will now also be a ~4" border in the front. 

Once I knew it was going to work out - I didn't even have to buy more material! - I was anxious to get started.  First I cut my fat quarters into 2" strips.  I used my strip cutter, which I LOVE.   At my mom's suggestion, I put the strips in Ziplocs according to which of the 4 different types they will be. 

Then today, Day 2, I cut the 83 squares (5x5") from the red print and bagged them.  I had more time, so I started sewing the strips together.  Of the four different block types, I got two of the sets of strips sewn together.  I love the way the strip sets look the same at first glance, but on closer look you see they are made of different materials.

I'm really in the mood to just keep going.  Next up is to sew the other two strip sets.  Then I'll cut all the strip sets into 5x5" blocks.  Then I'll get to arrange the blocks and see if all of my calculations were correct.   However, the kids are out of school tomorrow, and their patience and level of self entertainment will not allow me to quilt while they are here.  I'm trying to think of fun things to do with them (pumpkin patch?  zoo?)  and not be quilt-cranky.  (But maybe after they go to bed tonight...)

David Update

I thought I'd do a little update on David.  He's been home for about 3 weeks now.  They aren't requiring as many labs as I was afraid of, and they've only adjusted his medicine dose once.  Overall, I have to say he's doing well, though he has a little cold right now.

Still, despite overall good health, David hasn't returned to normal, and I miss him!  While in the hospital they changed his seizure medicine dose.  As expected, this led to some dizziness and loss of skills he'd already mastered.  We expected it would take a while for him to get everything back, but I'm frustrated at how long it's taking.  David has most of his fine motor skills back, but gross motor has been a big loss.  He rarely sits on his own and when he does he doesn't last long.  He used to crawl across the room, but now it's just a foot at a time, and probably just once each day.   He used to move around and explore a little - we were getting used to finding him in the kitchen or next to the hallway.  He does a lot of laying in the same spot now.  We're also finding him stuck on his stomach after he does try to roll or sit.  And he's sleeping quite a bit, too. 

This kind of thing is so frustrating.  What's causing it?  The new seizure med?  That's most likely, but there's also the new rickets med to consider.  And there's the cold.  It could be a factor.  So we wait.  We've decided to give him the full 4 weeks to adjust to the med.  So, if things aren't improving next week, we'll be trying to make an appointment to see the neuro.  It's one thing to do a med adjustment when I've seen him have seizures.  It feels a whole lot different when I thought he was fine at the old med level.

Still, even though I sometimes wonder how many faces he looks at me, we've been taking him out and he's having fun.  He's loving preschool, stroller rides, and even a ride in the bike trailer.

Home Again!

We're home again and settling in.  (I haven't taken any new pictures, so here's an old one from the hospital.)   David seems very happy to be home and the rest of the kids were happy to have us back, too.  We had just one prescription glitch - that I'm still trying to sort out - but other than that it was a very smooth transition home. 

I'm going to take David for lab work today and Friday.  If all goes well, they will remove the PICC line on Friday at a clinic visit.  It's supposed to be very easy, and I look forward to not having the PICC line to worry about.

I did get to talk to the doctor one more time before we left the hospital and he told me he was very pleased with how David's lab results looked.  At this point we know the medicine is safe for David to take.   In 4-6 months they'll do another set of x-rays and see how his bones look.  The doctor predicts, based on the current lab work, that David's bones will actually be stronger in 6 months.  That would be GOOD news!

Bonus Post - What I Learned in the Hospital. (from cable)

So, we don't have cable at home. We just watch broadcast tv, partly to save money, but mostly because I'm kind of addicted to tv. Being in the hospital with a kiddo who was pretty much 100% healthy and really sleepy led to quite a bit of tv time for me. So here are things I learned during the past week.

1. Having Disney Channel East and Disney Channel West means that you can watch several hours of preschool programming, then re-watch it all again. Imagination Movers, Mickey Mouse Club House and Handy Manny, twice each day. But only if he manages to stay awake...

2. There are enough women in America who give birth without being pregnant that there's a series about it.

2a. I want something in my life to be dramatically re-enacted, because, based on what I saw, I'd look like Jennifer Anniston or Natalie Portman in the re-enactment! Not knowing you're pregnant might be much more believable in real life where the woman is plus sized, but much more fun to watch when the person is magically half their weight and width.

3. Advertising works. I'm not sure I'd have chosen to watch a show about polygamy on Monday, but by Sunday, after countless ads viewed, there was no way I was going to miss Sister Wives. (Ok, moment of Honesty, I totally would have watched it on Monday. The advertising did make sure I knew exactly when it was in, though!)

3a. Sister Wives is strangely addicting. In a train wreck sort of way. Sure, a 3 wife family has been working smoothly, so why not find a 4th wife? How hard could it be? (Not finding the wife, that part, apparently, wasn't hard at all.)

4. If your wedding dress budget is $3,000, never try on the $6,000 dress, because you will love it and no other dress will make you happy. This is true, it happens every time. ("Say Yes to the Dress" and "Say Yes to the Dress:Atlanta")

5. When going to the bridal shop with your 3 future "sister wives" it is best to call them your "advisors" so as to not let anyone in on your real situation.

6. There's a lot of drama coming between Jr. And Sr. This season on Orange County Choppers.

7. The Wizards of Waverly Place is totally ripping off Twilight.

8. Camp Rock loses the Final Jam: Camp Wars contest to Camp Star, but it's ok, because Camp Rock is so much fun that all the kids are going to come back next year anyway.

9. Never crush on a co-worker tattoo artist and fight about him with another crushing co-worker tattoo artist. You'll just end up looking dumb, and all that tension could cost you your job. And he doesn't like you like that anyway.

10. Something always goes wrong when you flip a house.

11. There is a show (Four Weddings) where 4 brides each attend each others' wedding and score them. The winner gets a cool honeymoon. Because your special day celebrating the lifelong commitment you're making really should be a contest, too. Absolutely. (p.s. The secret to winning is to spend a lot of money on your wedding. Cause, really, having enough money to put a down payment on a house is totally overrated.)

12. David still laughs at Sponge Bob Square Pants

Going home

Looks like we're going home today once the weekend labs are run, which is apparently at 11am. The doctor, he is a very busy man, I know because he told me. Still, since I asked he's really going to try to stop by, either that or write really detailed instructions for the nurse. Actually, I'm fine leaving without seeing him again if they don't adjust the dose. However, since he mentioned that he was considering changing it, we'll have to see how things go. I did get the answers I wanted about labs and other details. It turns out they *do* have a plan already made up, and it's simpler than I thought and includes an appointment to have the picc line pulled out on Friday.

So, I'm feeling good about going home.

Home Tomorrow!

The doctor stopped by this morning to say everything looks good and we can go home tomorrow after they see the labs they've got waiting to run. Hard to say when that will be. The labs should be done by noon, he said, but then they'll have to put in discharge orders. I know from experience how slow that can be, so I'm prepping myself to be patient. I'm hoping to be home before school gets out, but before supper is more realistic, I think.

When we get home, the medical supply company we use will come by with supplies and training on caring for the picc line. I wish I could get that training at the hospital *before* I'm alone with the picc line, but I understand this way they can do the teaching with the actual supplies we'll have. In the mean time I'm asking a lot of questions.

So, we're in the homestretch now, and I'm ready to go home!

It's all in the details

So here's something I didn't know, and David's doctors didn't know either... The lab will only run urgent lab work on the weekend. Of the two things they are tracking, only one can be considered urgent. The other they will continue to draw, but won't run until Monday. Huh. That's interesting.

So it's looking like we'll stay until they can get those non-urgent lab results on Monday. I did get some answers about lab work from home - it will probably be every other day. That's a relief compared to what I was imagining. I also talked through some things I wanted to know for when we got home, like what We should do if David has a seizure. So, now that I'm feeling better about going home... we'll probably be here an extra day.

David seems more awake today and he's back to moving around. It's nice to have him back!

Charts & Graphs

I like numbers, so I've been graphing David's lab results for two of the things they are watching the closest. It had gotten to the point that I thought I could predict what would come next. When they announced this morning they were keeping the med dose the same, I figured I could predict what we'd see on the labs.

I was wrong. The doctors were surprised, too. So, the dose of the new med has been cut in half tonight.

They still are talking like we'd go home on Sunday, but I'd feel better if try were done messing around with the dose. They've told me we don't have to leave until we're comfortable.

David has been very sleepy again today. Still not sitting on his own, but he did do hand motions to some of his favorite songs and was happy while he was awake.

So we'll see what the evening brings.

Reality Sinking In

GivIng the new med twice yesterday went well. Today, for the first time, he's getting exactly the same dose the he got the day before, which is likely the dose he'll go home on. And it's looking like Sunday will be the day.

That reality is setting in now as I realize what going home will be like. Thinking through the mechanics of picc line care, the likelihood of him returning to school, and then there's the lab work... The doctor's won't commit to a lab work schedule, but the "week" at home with a picc line and frequent labs they mentioned yesterday was "10 days" today. The doctor thought once a week labs after the picc is taken out, but "hasn't decided" how often it will be with the picc. That makes me think they just don't want to tell me how bad/often it will be!

So, we're in wait and learn mode. Wait to see how he does on the dose he's at and make sure it's stable. Learn how to care for the picc line and how to cut, crush, and mix the short lived new med.

David is still sleeping a bit more than normal and too dizzy to sit up or crawl around. He's not signing or clapping by himself, though he is still touching the iPad. But these are things we expect when we adjust seizure meds like we did on Tuesday. Hopefully it will clear in a week or two.

Pictures!

I'm home to spend some time with the older kids, but while they are still in school, here are some pictures of the stay so far.

David's PICC line is under the white "stocki-net".  He can still bend his arm and play.  Hooray!

Here is David, post EEG with his leads still on.  He wore them all day, because they thought they might repeat the EEG.  (They didn't.)

Here's how we rolled.  David' in the seat, wirebox in the basket.  Wicked cord/dreadlocks hair.

David enjoyed sitting up and playing in his crib.  Especially with the mirror.

The Childlife Dept brough us the mat for the hospital room floor.  David didn't care about the EEG wires, he was all over. 

I picked up some yarn on a quick trip home and crocheted a PICC line cover.

One last big one, here's David snoozing.

Going Home Sunday?

We may be going home Sunday, if things progress well. They've decided that the new med needs to be given twice each day, starting today. I got a copy of the lab results and applied my math skills, but I don't exactly see what they are doing.

Going home will involve an as-yet-to-be-determined lab schedule and keeping the picc line. I'm not thrilled by that. Happy to go home and happy that they think the med will be safe enough to use at home, but not looking forward to IV care at home, even just for a week. Not to mention I'm picturing difficulties scheduling lab runs.

Good News

I talked with the rickets doctors today (the ones who made up the plan) and got good news. David has done well with his first two doses of the new med, and he's not showing the side effects they were afraid of. They were waiting on a couple more results to decide if they like the dose he's at now, or if they will raise it again this afternoon. Once they settle on the dose, they'll keep him "a couple more days" to watch for cumulative effects. So maybe home by the weekend.

Of course there are a lot of questions about going home. Will he keep the picc line? How often will he need lab work done? How will they watch longer term cumulative effects? But I'm in no rush, so we'll get the questions answered before we leave!

David slept more on the new med and seemed dizzy, but was in good spirits. So he at least doesn't seem distressed.

"We're going to _______"

Communication is always an issue in the hospital. I have examples from yesterday of good and bad communication, as well as a no communication example.

Good communication
I asked for a nutrition consult, as I had planned with David's nutritionist at his last appointment with her. We're watching his weight gain, because it would be hard to learn to walk if he was wider than he was tall. She checked his records and got his weight and called me to suggest decreasing the amount of formula he gets each day. We discussed it on the phone. She brought me up a written feeding plan. We made some changes so it would fit our feeding and meeds routine at home. She submitted it to David's team of doctors and we were good to go. I knew what was happening, and even had input to the extent that it was needed. Yay!

Bad communication
The neurology team was very concerned with how David's EEG looked. They explained that they wanted to increase his seizure meeds, and they were so concerned that they wanted to do it immediately, through his IV. He seemed fine to me, but I was ok with their plan. Except they never did it. No IV meeds were ordered. No explanation offered. Just nothing. Then hours later, an order to do the increase of his daily meeds they'd discussed. That was a whole lot of "it's scary!" followed by nothing.

No communication
David's nurse walked in yesterday afternoon. She'd just gotten an order for a new med for David, a one time dose, ordered by David's rickets team. Really? That one was enough out of line that I got an apology this morning from the doctors involved.

All is quiet here. David is still sleeping. I expect a lot of that today, due to the increase in seizure meeds.

EEGs, iPads, and Surprises

First off, David is doing well and responding to his first dose of the new med without side effects. Things have been going smooth on that front.

Yesterday David had a neurology consult. This visit was unrelated to the new medicine trial and was planned several months ago to take advantage of David's inpatient stay to do a nuero test called an EEG. This test looks at his brain function and observes seizure activity.

So this morning we rolled on do to the lab. The technician glued about 50 different leads to David's head and we sat back to watch. I was feeling very relieved, because David was laying there being twitchy. I wasn't sure whether it was a seizure or not, but I figured this was I'd know one way or the other. The EEG was longer than I remembered the first one being, and when we were done the technician checked a message that had come in during the test and told me she'd be leaving his leads on for a possible retest. Hmmmm. She wrapped his head like a mummy and sent us back to David's room. All I could think was that my mom-senses were right! He had been having low level seizures. And I'll admit I was happy they were caught on record, whatever the twitches were.

The floor nurses seemed surprised to see David's new 50 lead hairdo. (I took pictures, of course!). And next thing I knew, the neuro team was in the room. If you've ever been in the hospital waiting to see a doctor, you know how odd it is to have them actually show up right when you have questions for them!

So here's the scoop: David was not having "clinical seizures" but... To be continued after David's lunch.

I'm back. So, it wasn't seizures like I picture them, the outwardly visual kind, but they did see a lot of abnormal brain activity. In fact it was so much that the doctor described it as "scary". ( note to doctors: please do not use the word "scary" when talking about my child. May I suggest "alarming" or "concerning".). Anyway, I think it we this continuous, scary brain behavior that brought the team to David's bedside so quickly. So, there's that at least.

Long story short: David's been living with this static (my word) for months, likely. It's going on right now while he's babbling and watching Handy Manny. (thank you CMH for having cable!). With this scary brain activity, David is, and has been, at risk for a big old seizure any moment, so they are going to up his seizure meeds and try to beat back this scary brain activity. The neurologist did seem impressed with David's ability ton laugh and play through scary brain activity, though, and he canceled the repeat EEG. Though they haven' taken the leads off yet, so he's still got quite the interesting hairdo!

Finally, a note about the iPad. This has been the coolest thing ever, and not just because I played Moxie2 through an entire nap! We've used it to distract him through lots of lab work. I don't think he even knows he has a PICC line. I used it today to keep him calm through the lead placement. Awesome. That was 30 minutes of Elmo, Fireworks, sparkabilities, and monkeys jumping on the bed. And 30 minutes of no tears and screaming like the boy next door. Best purchase ever!

The Plan

We have a plan. David got his first dose of the new med at 2pm. They will do lab work every six hours to watch his blood calcium levels. Our goal is to see what dose of the med, if any, that he can handle. Then they'll send us home and watch it over time to see if it helps his bones.

David finally woke from his 8am sedation at noon. He woke up slow and was pretty upset, but Baby Signing Time saved the day and calmed him down. He played for a while then back to sleep.

All in all, it's been a smooth day.

We Have a Room

It's 11:00am and David finally has a room! Well, ok we've been in the room for half an hour, but we're fully checked in now. Whew!

We arrived at 6:15am (I was 15 minutes early! *gasp*) and got called back at 7:10am. David was sedated and a PICC line (special kind of IV) was placed. As expected, sedation left David very... sedated. (He's still sleeping now.) That sedate state turned out to be handy as David slept his way through an ultrasound (to check the state of his kidneys) and some x-rays (to look at how his bones have been affected by rickets) and checking into his room.

A quick talk with his nurse confirmed that she's not been told THE PLAN yet, which isn't a surprise. So we'll see where things go from here. I plan on making some phone calls and doing some reading while he's out.

One Day To Go

Today is Saturday.  Tomorrow is our last normal day before the hospital.  The last couple of days have been highs and lows.


Low = hearing from the developmental pediatrician that she doesn't need to see David anymore because she doesn't expect much development from him.  (Really?)  It's nice to have one less doctor to have to go see, but it was still kind of a blow to hear her opinion.


Low = last minute drama about getting a physical done prior to Monday morning's procedure


High = handling such drama appropriately.  It just wasn't *my* problem to fix, so I refused to do so.  Miracle of miracles, I heard later in the day that the problem was solved, and without *me* having to call doctors and ask for reports.


High = visit from my mom and aunt, a day of quilt store shopping, a bag of fall colored material to turn into a quilt, and just lots of time spent with them.  They are still here until Monday morning, and I'm happy to have them!


So, one more day at home (after today).  A few things to pack up tomorrow and we're ready to go.

4 Days to Go (Really) - Feeling thankful

Here's a random picture of David - playing with his shadow - to add some color to today's post.


Now, let me correct myself by saying that NOW there 4 days to go.  Yesterday's should have been 5 to go.  My brain is running at hyperspeed and I've been skipping ahead a day all week!


Today was David's last day of preschool before the hospital stay.  I've emptied out his backpack and I'm filling it with stuff for the hospital stay now.  I did some last minute running to Target and I'm feeling set now - other than finishing the packing for me and David - and I'm feeling REALLY thankful today. 


My mom and my aunt are driving in my direction as I type.  They'll be here tomorrow, and I'm lucky enough to have a relaxing few days enjoying their company here before the hospital stay.  Their trip was planned long ago, and they have to leave on Monday, but their visit has perfect timing for me!


I just sent an email to Tony's mom.  Tony's parents, Gil & Betty will be arriving here on Monday in time to pick up the older kids from school.  I don't even have words for how thankful I am that they'll be here to take care of and give extra attention to Zeke, Hassani, and Gladys.  This hospital stay would have a whole 'nother feel to it without their help.  We are so lucky!


We've also got our kid-whisperer, Michael.  He's a junior in high school and phenomenal with kids in general, and Hassani in particular.  More than anyone else in the family, including David, Hassani gets very stressed out at changes in routine.  Michael comes and does homework with her, distracts her, and pays attention to her.   This means that Tony, Gil, and Betty can save their patience for bedtime and other challenges.  Hooray for Michael!


We've got Kathie and Team David.  Long ago Kathie volunteered to coordinate a group of volunteers from our church who would come and visit David in the afternoons.  I think of them as Team David, though we sometimes call them David's Grandmas (and Grandpa!).  They come visit with David while I make a quick run home each afternoon.  Kathie's got them all lined up, including a turn for herself.  I love that I know he's not alone.  And I appreciate their time.  And I appreciate that I didn't have to coordinate them.  It's incredible.  They even spend some time talking with me.  I'm a huge talker, so that makes my day.
 So, in the middle of my hyper mind packing things up so I'm ready to relax with Mom and Connie tomorrow, I'm really, really thankful for the whole crew of family and friends who will be coming together to make this hospital stay a lot easier.

4 Days To Go - Getting Ready

Here's David a couple days ago - he rolled himself up in the blanket and was much prouder and happier than the picture shows.





Here's David after his haircut last night.






One of the things we know helps in the hospital is having David's head shaved for IV access.  (He's got some tremendous veins in his head and he doesn't touch his head either.)  So, he's supposed to just have a PICC line (in his arm) this time, we figured it was a good thing to have his head ready anyway.  Plus he's cute bald.

David's iPad

We got David an iPad to use as a communication device and touch screen computer. It does all that and more. One of the things it will do is allow me to post blog entries. No pictures, and I'll only be able to do it if we have wifi access at the hospital, but I'm hoping!

A Planned Hospital Stay

I don’t think we’ve ever had a planned hospital stay before.  There was an overnight after a port placement once, but that’s all I recall.  So, it’s new and welcome ground to be able to plan ahead.  It’s amazing to see all the supports we’ve developed fall into place again after almost a year since his last hospital stay.

First, getting prepared feels almost luxurious!  Usually my packing time is under five minutes then go.  I’ve had a couple weeks to make lists and I’m starting to pack things up now.  I’ll be coming home almost every day, so even if I forgot something, no big deal, but it’s been kind of fun trying to think of everything he’ll need or want – and me, too.  I’ve loaded a couple new games on the iPad – for me and for him – as well as a couple new digital books on my book reader in case I end up with some down time.  See, luxury!

Second, our support people have had time to plan, too.  I already have a list of volunteer grandparent/visitors for the afternoons with David when I’m planning to make trips home to see the rest of the family.  Tony’s parents will be driving in on Monday when I’m heading to the hospital with David.  They’ll be here before the older kids get out of school.  Michael, a high schooler who works really well with Hassani is going to come and help her do homework.

Third, there’s no scramble to notify people and change appointments.  There were only a couple things scheduled for the week that have already been rescheduled or we’ve figured out how to deal with.

Finally, it’s nice to be able to reassure our older kids that David is not feeling badly.  He’s fine, not in pain or sick, and he’ll probably have a good stay in the hospital.  We were able to prepare them, too, rather than explaining one morning why mom and David were gone.  Hopefully this will turn out to be a good thing for them.

So, I’m doing the planning thing I like to do, getting everyone ready – and looking forward to some days with my mom and my aunt visiting before the hospital stay.  What a difference!

David's Medical Story

We're getting ready for a planned hospital stay for David.  That's going to take some teamwork and we're lucky to have a very big Team David.  I'm going to try keeping up a blog to let everyone know what's going on each day.

The previous blog entry tells the story of how we came to have David in our family.  I posted it right around his adoption day.  I thought, before the hospitalization, I'd explain a big about his medical issues and why the doctors want him in the hospital for a week or two.

David has the following diagnoses:  Vitamin D Resistant Rickets, Seizure Disorder (aka Epilepsy), Global Developmental Delays, swallowing issues (so he's primarily tube fed), and undiagnosed immune system issues.  These are all genetic things he was born with.  While I think the doctors would like to have some sort of name for what he's got, it seems like it's just a tough genetic draw. 

First, the easy (to explain) issues.  Global developmental delays for David mean that he’s four years old, but he’s functioning like a one year old.  As our doctor pointed out “delay” isn’t really the right word, because it implies David with “catch up” some day, and he probably never will.  But we’re enjoying watching his development in slow motion appreciating each milestone all the more for the time and effort it took to reach it.

Seizure disorder is something that didn’t really show up until David was 3 ½ years old.  The different-from-normal brain tissue that David has makes it not too surprising that David starting having seizures.  Thankfully, the seizures have been stopped by some daily medicines David takes.  Unfortunately, these medicines have to be adjust for physical growth, and each adjust means getting used to the medicines’ side effects, which means regression in development.  Thankfully, again, David has bounced back pretty well from these regressions and is doing very well at present.

When David was about 18 months old his first foster mom noticed he was getting sick very often.  The doctor ordered a swallow study and discovered that David was inhaling (aspirating) as much food as he was swallowing.  They quickly put in a feeding tube (AKA g-tube) and took David off food/drink by mouth.  About a year later David was showing signs of swallowing better, and working with his therapists, we began introducing food by mouth again.  That’s continuing, slow but sure.  His primary nutrition still comes from his tube feedings, but he enjoys pureed food by mouth, too!

Now the more complex issue.  David has Vitamin D Resistant Rickets.  You may have heard of regular old rickets, where when a person doesn’t get enough of the right vitamins, their bones gets soft and bendy, due to lack of calcium in a balanced diet.  David’s form of rickets is like that, except that even on a perfect diet, David still wouldn’t get calcium in his bones.  His body just can’t move calcium from his stomach to his blood stream.  So, due to nutrition from his birth mother, David was born with a healthy set of bones. Once he was born, his blood stream went “Hey, where’s my calcium?”  And his stomach said “Sorry, I’m not sharing.”  So his brain sent a hormone messenger service to his bones saying “Help!  The blood needs calcium!  Please loan us some of yours!”  So, his bones, givers that they are, started loaning calcium.  But the blood is kind of greedy and doesn’t really repay loans, so David’s bone started having less and less calcium.  He was about 18 months old when they finally figured out what was going on and gave it a name – Vitamin D Resistant Rickets. 

The best treatment for David’s rickets, so far, has been an IV supply of calcium straight into his blood stream.  With extra calcium on board, his blood started paying his bones back, so to speak, and he built up bones full of calcium again.  Calcium is kind of rough on the veins, so, like when people get chemo, it needs an IV that taps in close to the heart, where the blood is moving fast.  That’s a central line IV, which can be a port-a-cath (AKA port) or a hickman.  That’s where the final issue “undiagnosed immune system issues” comes into play. 

So, the port worked well for delivering IV calcium to the bloodstream.  But David kept getting infections.  Five infections in nine months – five different central lines.  Each time he’d get an infection, he’d end up in the hospital where they’d treat him with antibiotics and remove the central line and place another one.   After the fifth infection the doctors started wondering just what was going on .  They pulled the last line out and decided to take a break from IV calcium.  In the mean time they did some genetic and immune system work ups.  They didn’t end up with any answers, but they know he’s got issues, so “undiagnosed immune system issues” is what he’s got.  This is something they’ve seen in other Vitamin D Resistant Rickets patients, so it’s probably linked somehow.

So, they pulled the lines out and did some tests.  In the mean time, the doctor decided to try some oral (or in David’s case g-tube) medicines that didn’t work when David was first diagnosed, but were worth a shot now.  (The difference was that the first time they tried these meds, David’s bones were low on calcium with little to lend out, so they were trying the meds as a cure.  This time around, we were trying them as maintenance.  And it turned out they worked ok.   The meds give him megadoses of calcium (something like a bottle of tums, given 3x per day) and megadoses of Vitamin D (which helps move Calcium around).  The thought is that if even a tiny bit of the megadoses makes it to the bones, then it will help. They worked ok enough that from October 2008 to September 2010, David has been taking just oral meds, no IV meds.  Hooray!

However, labwork is showing that, while David looks really healthy on the outside, inside the calcium loans have started again.  They can see the hormone messengers in the blood stream asking the bones for calcium.  They can see on x-rays that David has lost calcium in his bones.  He’s ok on the outside, but it’s a downhill slide inside.  We could start IV calcium again, but there are risks with that because of the immune system issues.

So now they have a new idea.  What if they could use a drug to stop the hormone messenger?  Then there would be no more calcium drawn out of his bones.  Now, David still needs calcium in his blood stream, but right now the hormone messengers are opting on the safe side.  They ask the bones for more than the blood really needs.  So, if the doctors can adjust the hormone messengers, they can see if the blood could survive with just the right amount of calcium in it.  That might slow down the calcium loans out of the bones enough that the megadoses of oral meds could keep up.  That’s the hope anyway.

So why the hospital stay?  As it turns out, the whole hormone messenger system is really important.  If the blood does get too low on calcium, it’s a serious health concern that could lead to seizure and other problems.  So, while the doctors are using a medicine to limit how many hormone messengers are going out, they need to monitor David’s blood calcium levels and be ready to act quickly to give him some extra calcium.  That’s why he’ll be in the hospital.  And to make doing blood labwork and possibly giving calcium easier, they will put in a PICC line – a temporary central line.

It’s going to be an adventure.  The doctor’s will try the medicine and see what kind of results they get.  Best case scenario it will work like a charm and David come home with a new oral medicine.  Worst case, we start talking about placing a more permanent central line again.

So, that’s the story.  I’m making my lists and organizing for the stay which is about a week and half away.  This was probably more information than you needed, but it felt good for me to get it out.  I’ll try to keep things up to date so you know what’s going on with David!