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!

David's Backstory and Medical

I'm trying to combine a couple blogs into one, so I'm reposting some old information.  Here is the story of how we came to have David in our family, written right after his adoption in August 2009.

For those of you who don't already know, here is a quick (ok, maybe not so quick) version of David's story.

In February of 2008 we were a few months past Hassani's adoption. Tony and I both found that we were thinking of fostering again, but we wondered if we were rushing things and if it would be right for our family. We decided to spend a week in prayer about it. Should we start fostering again or wait a while? At the end of the week we felt that fostering again was the right decision to make, so we called our social worker and let her know we were opening our home again.

Although we didn't know it, another foster family had also spent a lot of time in prayer, and at about the same time. On the same day we called our social worker, they called theirs. They had been taking care of David. They loved him very much, but their house in rural Kansas was too far away from the doctors and hospital that David was needing more and more of. They had decided to see if a home closer to the hospital could be found for David, who was back in the hospital again.

On Wednesday, February 14, 2008 we heard about David and talked with his social worker. Because David's medical care was pretty involved, she wanted us to meet with one of his doctors at the hospital. Tony's parents were in town visiting us and were happy to stay with Zeke, Hassani, and Gladys while we went that evening. The social worker and the doctor met us up in David's room. We stayed for a while and learned about David, held him, asked questions, tried to think of more. We left that night telling the social worker we'd get back to her in the morning so we could think it through first. I think she knew before we left the hospital. We decided in the car on the way home and called her the next day. We wanted to take care of David. On Friday, with Tony's parents still in town, I moved in to the hospital with David and started learning how to take care of him.

David was 20 months old, though he was functioning on about a 6 month old level. He had a lot of medical issues as well. The hospital staff was wonderful. David's first foster family was incredible, spending a lot of time with us so that we knew everything we possibly could about David. After a few days in the hospital we were able to bring him home and settle in.

Later, we realized that David needed an adoptive family, and after much prayer we decided that we wanted him as part of our family forever and we started the adoption process. On August 26, 2009 David's adoption into our family was complete. He's a Bockelman now. :)

Over the past year and half with David we've seen him deal with even more medical issues, but come out healthier over all. He's now 3 years old and operating on a 10 month old level. We don't know what the future holds, but we can see it will be a joy filled journey. People have told us how lucky David is to have us. We tell them how lucky *we* are to have David!