Atomicmom

So What Just Happened?

2012-01-28T10:37:00.000-08:00

Ah, we are home! It was so good to sleep in my own bed, and based on the smile on his face all evening, David was also really happy to be home.

I'll probably not be blogging our everyday life now that we're home, but I thought I'd post one more time and let you all know the big picture. For the most part I kept the blog to pretty positive thoughts. I'm still hoping for the best, but I also want to be real.

So far in David's life we've always planned ahead, thinking toward a day when David is an adult and will need someone to take care of him. With this latest turn, the doctors have been clear that David's time with us is limited. David has a disease, or a condition, which they don't have a name for that means his brain is deteriorating. Either due to ninja seizures or a neuro-degenerative disease/condition David will continue to lose things he knows and can do, and even things his body can do for him. Eventually this will be fatal.

They did a lot of interventions at the hospital and really cut down on the amount of ninja seizure activity. There is no doubt the the coma maneuver really helped. Even Hassani noticed that David seems so much more playful and with it than before he went in the hospital. However, they do predict that David will continue to decline. They hope we will be able to hold him in a plateau here for 3-5 years, but it could also happen that he continues to decline at the fast rate we saw in the past few months, or it could be something inbetween.

We are going to continue to try new medicines or ideas his neurologist has, but we have decided that it would be best for David and our family to try those things at home. David's medical team supports us in this decision. We're going to make the most of whatever we've got. We could have years left with David, and I'm not going to ruin them worrying each day what tomorrow will bring, and hope you all won't either. We're going to keep doing the things that are good for David. We're going to work on making him strong again and continuing to help him learn to communicate better. And we're going to appreciate every smile and laugh and all the joy he finds in life.

I wanted you all to know about this. We have chosen not to share with Zeke, Hassani, and Gladys what the doctors are predicting for David until we find ourselves closer to the end. I would appreciate it if you helped us with that. They all care so much for David, and I don't want them worrying about him any more than they already do.

Thank you all so much for the help, support, and prayers of the past couple weeks. In so many big and little ways you were here for us. We love you and we thank you!

We're Coming Home!

2012-01-27T13:38:00.001-08:00

We are on our way to discharge après tonight if all goes well. The seizure activity hasn't stopped, but we will try to manage it from home.

Good news to pass along

2012-01-26T19:53:00.000-08:00

After typing the last update I forgot to include the happiest news of the day... David has been awake and alert and playing all afternoon! Hes slowing down now and just watching some tv, but we've had lots of smiles. If you have Facebook access I was able to post a few pictures there, but I can't get them on my blog, sorry!

He had a really good day. He's in love with his day nurse, grinning from ear to ear whenever she came in the room! Of course she's in love right back. It's really been a good day.

Thursday Update

2012-01-26T15:02:00.000-08:00

I'm so sorry I didn't post earlier. It's been a busy day, along with some happy and sad.

Bottom line, they haven't been able to stop the seizure activity, though it is much better. They are not seeing the steroids making a difference. We have requested and the doctors agreed to work out a plan where David can be treated at home. They have another medicine to try, but we can try it at home. We won't be constantly watching the EEG, but instead just judging by David's behavior and gains or losses. He can be with us and go back to school and enjoy the things he loves!

So, we're working toward going home, knowing he'll likely still be having losses, but hoping they will be much slower now. We should have a meeting with the doctors tomorrow or Monday. I get training tomorrow on using a home suction machine. (David can't really handle his own drool and mucus any more. This might be part of his losses, or it might be a side effect of a med. we'll be trying to figure that out.) they are easing him off of some IV meds. Each thing is a little step closer to going home. We still don't know what tomorrow will bring, but he's smiling again and we'll make the most of every day!

The up and down day

2012-01-25T21:52:00.000-08:00

It's been an up and down day. David was awake this morning and I got to play with him and make him smile. That felt so good, but I was really bothered that he wasn't trying to touch his iPad or play with it. He also sometimes just stared at nothing and I couldn't get his attention. I'm hoping he'll be better tomorrow, but playing with him today just brought home once more all of his losses.

The neurologists stopped by and said they hadn't had a chance to look and see how he was doing on the EEG yet. They said if the EEG continues to look good, we could discharge on Friday or Sunday. Something in that range.

David got a PICC line today, which is a stronger and better kind of IV. Call it a super IV if you will. This will be used for all his IV meds and lab work. When they were prepping for the PICC line insertion I finally reached my overload. You know that point where a couple really small things don't go your way, but they all add up to a lot of sobbing? I was the sobbing one.

The only problem with crying was I just couldn't stop. A nice nurse checked on me and someone called a chaplain, who showed me to a quiter room so I could just cry for a while and talk things out with her. Hospital chaplains are the best!

After the PICC line was put in, he was moved to a regular hospital room. Around 9pm he had a seizure, the non-ninja kind. They gave him some IV medication to stop it. So we have a lot of questions for the doctors tomorrow.

Mid morning update

2012-01-25T09:47:00.000-08:00

The PICU team did its rounds and they are deferring to the neuro team as to whether David should stay in the PICU or return to the regular part of the hospital.

They have ordered a PIC line for David instead of the regular ivs that have had to be replaced multiple times. That should be done this afternoon and will be a welcome relief. I think it was 6 separate sticks yesterday. It will be good to have a longer-lived IV access for labs and meds.

David seemed more alert this morning, but was still pretty spacey. He'd be looking at me or watching his iPad, and then would just stare into space ignoring me. This part is very hard. The neurologist told me that when he wakes up, that will be our new normal. I'm trying to be patient, but I worry, because of the staring, because he isn't even trying to lift his arm to the iPad. I am wondering if he's actually had more losses in the past week.

So I'm waiting for the daily neurology check in. It was at 4:30 yesterday. I don't know how fast they thought they might see the effects of the steroids. We'll see what they say. At least David's door faces the main hallway the doctors use. I'll be stalking the neuros!

Smiles

2012-01-25T07:44:00.000-08:00

Yesterday afternoon David seemed pretty groggy. One of the doctors was checking him out and saw that David was really focused on her. So, she started to play peek-a-boo with him and he smiled! Not a huge one, but very sweet and he was obviously entertained.

Then last night we were able to Skype between home and hospital and the kids had him smiling really big! It makes my heart smile.

I'm waiting for morning rounds, but I think they will probably move him to a regular hospital room today. I'll update later.

More ninjas and a new idea

2012-01-24T15:28:00.001-08:00

So, here's the latest news on David. He's still got sub clinical seizures going on. The seizures aren't happening all the time, just now and then, but it's important to stop them. They don't wan to do regular seizure meds because They are sleepy making and he's still barely awake!So they are going to try a course of steroids. Are steroids the cure for anything? They keep coming up with last ditch efforts. At least this one is easy, and maybe it will work.Anyway, it's 2-3 days in the hospital for that, and dare we hope to go home then?So they'll start the steroids tonight. They're going to continue the EEG so they can watch and see if it's working. If David continues to breathe well on his own, we should move out of the icu to a regular room soon. That will be nice!

The tube is out!

2012-01-24T07:28:00.000-08:00

As of about 9am today David's breathing tube is out! He's doing well breathing on his own!

Is today tube day?

2012-01-24T06:14:00.000-08:00

So, last night David was as awake as I've seen him since Wed morning. His eyes were blinking and I'd like to think he made eye contact. :) I got out his iPad and played an episode of Super Why. He seemed to be watching it, but he couldn't follow it with his eyes when I moved it, which I think is a sign of how doped up he still is.

It looks to me like a bit of a battle between waking up form the coma and the sedative effect of the new seizure meds. And then there's the coughing and the tape. Part of waking up froma coma apparently involves lots and lots of coughing. Full body shaking racking coughs, that are sadly silent as they wheeze through the tube. And if you have a cold like David, coughing involves a lot of mucus. A lot.

So at 3pm yesterday they gave David some pain meds to allow them to remove the tape beard that holds the breathing tube in place and put a new and clean one on. After he woke up from the tape meds David started coughing and drooling, and by 8pm, the entire bottom of the beard was loose. At 4am they gave more pain meds and replaced it again. Hopefully he'll wake up enough today to get the tube out and avoid a fourth tape beard.

It should be a good day!

Not quite as planned

2012-01-23T15:11:00.000-08:00

So... Not all the doctors agreed it was a good idea to remove the tube while David was still sedated. Most importantly, the doctor in charge is a wake-up-before-we-take-the-tube-out kind of guy. And since he's still not conscious... The tube is still in. They say it should come out tomorrow.

There are good signs. He raises his arms up every time they try to suction him. His eyes have been fluttering. He's doing some of his own breathing. He coughs on his own. And it was probably a good thing he was out of it today. They had to retape the tube around his mouth. (thats removing he old tape and putting newvstuff on, all while holding your mouth and the tube very still. They also started a new IV and removed the central line. These are all hings that are easier when you're not awake enough to hurt or fight them off.

The fever he's had could be caused by a UTI, they confirmed today, so I see some antibiotics in David's future.

It's a good day!

2012-01-23T09:15:00.000-08:00

I have talked with some of David's doctors this morning and am waiting for the rest to come on rounds. So far it's good news.

David is still not conscious, but showing more and more signs of coming around. He's initiating all his own breaths now, and will probably get the breathing tube pulled later today.

The biggest news is that he's been seizure free for 24 hours just on his seizure meds. They will likely disconnect the EEG tomorrow. They say it's very close to David's normal EEG from last year. That is GREAT NEWS!

There are other little details. I've started talking to the doctor about how we will know if this is happening again in the future. What if he continues to have losses even with the seizures under control? I felt like we had a good start to that conversation.

David did have a fever last night and they drew lab work to see if he has an infection, especially an infection of his central line. The fever is down, but the lab results take 24 hours.

Some of you may have been aware (via Facebook or email) that the hospital's wifi had blocked my access to this web page this morning, citing "mature/adult content" (what blog are they reading?) my thanks to them for restoring it quickly at my request!

Medicine makes me sleepy

2012-01-22T19:30:00.000-08:00

So, it looks like increasing David's seizure meds may have slowed down his return to consciousness. He is coughing and taking some breaths on his own around the breathing tube, but he's not responsive yet.

I had a great evening with the older kids. We didn't take them in to see David because we think it would worry them too much. I ate with them in the cafeteria, though. We played some Pokemon there and then walked to some of the cool spots in the hospital. It was so nice to see them again!

Tomorrow will bring more trying to wake up, and a new neurologist on rotation. The good news is that it's David's neurologist, so he knows David well and has been directing things behind the scenes. I'm curious to see if HE will train me toread the EEG, but I'm guessing he'll be vague and avoiding like today's neuro was. (I mean, that's probably the right call, because a little information is a dangerous thing, but that doesn't mean I don't want it! Don't force me to get a google degree in EEG reading!)

Little bit of bad new, but even more good.

2012-01-22T11:28:00.000-08:00

So, hang in there with me, because it looks better at the end. David had some ninja seizures today. However, it was not *continuous* seizures, just a little here and a little there.

Now for the good news. The neurologist was watching the seizures and noticed that they went away when one of David's new seizure meds was given! After a while the little ninjas came back, BUT now we know medicine that might make them go away. So they are increasing the dose of that medicine, and all of this is happening while they can watch on the EEG monitor.

I see this as good news. I was starting to think ahead and wonder how or what we would do if or when the seizures came back. So having them back here, in tiny amounts ata time where they can watch and see how to make them go away is a very good thing to me. So, there's no guarantees, but there never were, and at least know we have a medicine that's working on them.

(If you are wondering, they did try this medicine before doing the coma. They saw it had an effect on the seizures, but it just couldn't stop them. I suspect this is because they were constant and had been irritating his brain for so long. Hopefully it will be different now.)

Progress!

2012-01-22T08:04:00.000-08:00

On the physical side David is making about as much progress as you can while you're still asleep! He's showing early signs of coming around, including jerking his foot away from a toe pinch, coughing when they suction his lungs, and initiating some breaths himself - even with the breathing machine still in place. They are actually starting the process of weaning him off the breathing machine. It's a slow process and one they can't do until he is fully awake, but they started!

On the seizure side he has had no physical seizures. His brain activity is nearly constant, but the neurologists won't make the call yet about whether he is seizure free or not. I think that part of the issue is that David's regular brain patterns are pretty abnormal. So I can google search and see what a normal EEG looks like, but I don't really know what David's normal one looks like. And the neurologist didn't want to give me a lesson on reading EEG, saying its too early to call it anyway. So I am choosing to think that means its too early to worry about it either.

So today I'm celebrating the gains he's made. Thank you all so much for your prayers, positive thoughts, kind messages, and support in so many other ways! Thank you!

Sleeping Beauty

2012-01-22T04:36:00.000-08:00

So, I had this idea that waking up over two days involved a lot of in and out of sleep and grogginess. It still might involve that, but after talking with the night nurse, I realized they don't really expect him to start moving until maybe this afternoon.

However, there are all kinds of signs that he's moving toward waking up. His brain activity is nearly constant now (there was only very sporadic activity in the coma state). It also, to my untrained eye, looks seizure free.

The nurse reports he took a couple of isolated breaths on top of the breathing tube, which is a sign that his body is waking up and thinking about doing its own breathing.

So there are a lot of encouraging signs today. Mic the nurse's prediction is right, there won't be much to update today, but he's still doing fine.

Still sedated

2012-01-21T15:18:00.000-08:00

Just a quick update: we're definitely seeing more brain activity on the EEG, but he's still unresponsive. That just mean s he's still working his way out of the coma. So all is well.

Coma med turned off

2012-01-21T10:39:00.000-08:00

The nurse justnswitched the coma med off at 12:35. So now starts our couple days of coming out of the coma!

Running on hospital time

2012-01-21T10:06:00.000-08:00

Its just after noon (I've noticed the time stamp on these entries is off by 2 hours) the ICU doctors are still rounding and we haven't seen them yet. And last I heard, the neuro team and icu team were going to talk after rounds and then put in an official stop order for the coma med. So we wait.

PICU Trivia

2012-01-21T03:18:00.000-08:00

Did you know that in the PICU you...
-get a bath at 5am
-then you get some suctioning (well, to be fair you can pretty much get suctioning any old time your lungs desire)
-then you get a chest X-ray

-then your mom goes back to sleep (well, today she does)

Saturday is Coma Be Gone Day

2012-01-20T21:54:00.000-08:00

One of David's neurologists stopped in this evening for a quick update. They will stop the coma med tomorrow (Saturday) at noon. She said to expect it to take up to 2 days for him to be totally out of it. He'll keep the breathing tube in until he's fully conscious.

Our big hope is that the seizures won't return, however it's not an instant thing we'll know at noon tomorrow. It's actually going to be a few days before we can say "We kept the seizures away!" still, I'm feeling very very hopeful tonight!

24 hour mark

2012-01-20T11:36:00.000-08:00

I have a lot to update today, so I'll do my best to keep it all straight.

David's daily chest X-ray shows a little area of collapse in a lower corner. They are trying some simple methods to get it working again.

Today at noon marked 24 hours in the coma, so tomorrow at noon is the 48 hour mark, and that's roughly where they are aiming. That means I'm expecting them to start bringing him out of the coma tomorrow. Then we'll be watching for seizure activity on the EEG.

of course it's not as simple as flipping a switch, and a really wonderful nurse sat down and walked me through the process as it typically happens. They will slowly back off on the coma med, and the drs will decide how fast or slow this process is. She said to expect him to be pretty groggy for a couple of days. It wil take a while to recover, plus they have started him on new daily meds, and they could make him sleepy, too, as he gets used to them.

Through these recovers days, he will still be intubated with the breathing machine (ventilator or vent) doing his breathing. Once they think he's recovered from the coma, they will start weaning him off the vent, but this is a slow process and depends entirely on how eager he is to take over his own breathing again.

So my guess is that we'll be in for 6 or 7 more days, but that's just a guess.

I've had a lot of people offer help, and I'm so thankful to each of you. We're still figuring out ow best to handle this all, and once we have a plan, we may start calling you. Our church is bringing us meals. Thank you all for your thoughts and prayers and offers to help. I don't expect much to happen today (I hope). But I'll update if anything changes.

Looking good

2012-01-19T18:00:00.000-08:00

Another update from Tony that they have settled David's sedation level into the target zone they were looking at - so no more 3 minute lapses. That's good news!

Timing

2012-01-19T15:01:00.000-08:00

I got another update from Tony. The seizures are still gone, but they are having a hard time leveling out the medicine. They are looking for 8-10 second intervals with no brain activity. Unfortuately they have been getting up to 3 minute intervals with no activity. So they have backed off on the coma med to get him not so deep.

Good News! Ninja seizures knocked out!

2012-01-19T14:19:00.000-08:00

I woke up from my nap to good news. Tony emailed me and said they got the seizures stopped. They are tweaking the coma med to get just the righ level of brain activity, too much you get seizures, but too little is not good either. Sounds like they are working out the right dose.

If I understand what the doctors said, that means our 24-48 hour coma clock starts now.

Pictures

2012-01-19T11:17:00.000-08:00

I can't post pictures from my iPad. I'm home now, so here are a couple:

I think I took this on Tuesday. He's playing with his iPad. Head covered in EEG leads and smiling at me.

I took this one last night. The big tube thing is the breathing machine.

Rounds

2012-01-19T11:14:00.000-08:00

So I'm feeling much more upbeat after the second set of doctors rounded. David's seizures are nearly under control. There is a visibile improvement. Just a little bit more and they'll start the 24-48 hour clock.

Highlight of the day: Watching a doctor totally grill a resident, who didn't have all the answers. (I feel for him! I'd hate to not know the answers! I like to get everything right.) The best part, as Tony explained, was that feeling of "Ooo! Ooo! I know! I know!" that we both had about the questions she was asking. What are the side effects of pentobarb? Why let me list them for you. So, we had a moment of laughter.

Tony is at the hospital with D and I'm going to catch up on some sleep now. I'll update later.

Progress?

2012-01-19T09:26:00.000-08:00

We talked with David's neurology team. He's not Ina true coma yet because of the continued seizure activity. They are making progress on that and we got reassurances that the increased doses he's getting of the coma med don't have an increased risk of anything.

They do still think they'll be able to reach that seizure free coma state, they just have to take small steps (or med increases) to get there.

David spiked a fever. He did this yesterday, too, and it went away with Tylenol, so hopefullynits no big deal. Still, with a central line in place, fever = lab work, so he got poked in the foot and catheterized to collect urine. Because it had been quite a while since he peed, they just left the catheter in. They explained that the coma med can slow down the entire digestive system, so they use the catheter to help with that.

We also anticipate hat they will order IV nutrition instead of tube feeds. He hasn't had a feeding since 3pm yesterday.

He is not at all conscious. He didn't flinch with the catheter or blood draw. That's a blessing for sure, but hard to see.

Ninja seizure fight on.

2012-01-19T06:07:00.001-08:00

David is unconscious but still having seizure activity. They keep increasing the meds and the activity is lessening, but not gone yet. The doctors should be around soon so we'll see what they say. I don't know if this is normal or not, but I'm guessing it's unusual for the seizures to stick like this.

Coma process begun

2012-01-18T21:54:00.000-08:00

They gave the med to start the coma. It will take a while for things to be adjusted just right. I'm going to sign off for now.

Ready for coma

2012-01-18T20:50:00.001-08:00

Im back in David's ICU room now. He's been intubated and has a machine breathing for him now. He's got a central line IV and an in-the-artery blood pressure monitor. They are just waiting for a physician to ok an xray of the central line placement and the nurse will give the med to start the coma inducing process.

So What's Up with David?

2012-01-18T20:08:00.000-08:00

After sending a billion updates, I thought I'd use this page again to keep everyone up to date as often as I can.

I still can't post pictures from my iPad, so these will be words only. So here's the story up to now.

Back in August and Early September David was doing really well. Pulling to stand, crawling a lot, sitting and playing for long periods of time. Then in mid or late September he seemed dizzy and would fall over when kneeling or crawling. We started adjusting his meds, thinking it was a side effect. Over time he lost more and more skills, and the meds didn't make it any better. So by the time January rolled around he was no longer able to crawl, sit, roll over, hold up his head or lift up toys. In January he had an MRI which later proved to be normal.

On Tuesday this week (just yesterday!) I brought David to Children's Mercy Hospital to have an EEG, which is when they hook 40 some electrical leads up to your head and look and see what kind electrical signals your brain is putting out. We were hoping David would have a seizure while he was hooked up for his 1-2 hour appt, so they could see what kind of seizures he was having.

About 15 minutes into the test, we got a message that the neurologist monitoring the exam was concerned about the high and constant level of sub-clinical seizures David was having. They administered some anti-seizure med and decided to admit him to the hospital. By 11am we were upstairs checked into a room on the 3rd floor. I google what an EEG should look like it it was normal, and had to admit David's was pretty abnormal! Still, it was hard to understand all the rush. He looked fine from the outside, and I suspect he'd had this level of seizure activity since September. And speaking of that, what did these seizures have to do with his losses, if anything? Well...

The explanation I got was that they didn't know if there was a connection, but the seizure activity was alarming and they needed to stop it. Then we'd look at the long term issues. So, on Tuesday they started Depakote. It made him a little sleepy and it didn't look to me like it was doing anything seizure wise, but maybe it would take some time to build up to a therapeutic dose. Monday morning they explained there had been a positive change after the Depakote, just a small one. So they were considering increasing the Depakote.

Mid morning Wednesday I got to talk with David's team or doctors and ask some question that had started coming together for me. The summary was this, either the seizures had caused the losses he'd had, or it was the other way around and some unknown condition was causing this continual loss and the seizures were just part of that downfall. Probably the only good news out of this all was that no matter which way it was, they would treat it the same: stop the seizures and watch what happened. So stopping the seizures because the primary goal.

Wednesday afternoon they doubled his Depakote and added Fofphenatoin. I thought his EEG looked better to my google/Wikipedia trained eyes, even though it was clear the seizures were still happening. And I decided that "sub clinical" was too boring a way to describe them and decided to call them ninja seizures instead. They were both hard to see and resistant to anyone trying to stop them. See, that right there is proof that my sense of humor was intact a few hours ago.

So, a very wonderful friend came and sat with David, who was now sleeping due to all the new meds. I think the last time he was awake was around 8am this morning. Anyway, the friend sat with sleeping David and I went home to shower, repack, and spend some time with the rest of the kids. I picked them up around 3:40 and at 4pm David's doctor called and explained they were trying Versed as a last try to sto the seizures. They were also getting an ICU room ready for David. They wanted to move him over and medically induce a coma for 24-48 hours. I felt a little shocky. I told them to go ahead with the versed, but I did not want them starting the coma until I talked to Tony and had a chance to thnk of more questions to ask. By 4:35 we had two very good friends ready watch the older kids and were on our way to the hospital. By 5:30 we were talking with the doctor about why the coma was necessary. We decided to give permission for the procedure.

They had a room ready in the ICU and moved him over. By 8 pm we'd been walked through the procedures by several medical personel and it was time to wait. Tony headed home to be with the other kids and I'm waiting.

Thanksgiving -> Advent Calendar

2011-11-21T19:09:00.000-08:00

One of my very favorite Thanksgiving traditions is making our advent calendar. We started doing this years ago and the kids have enjoyed it at every age, from toddler to teen. We adults are pretty fond of it, too.

We make a paper chain to count down to Christmas.

I cut pieces of 8.5" x 11" paper in half, hot dog style. Those strips will be folded in half again, long ways. But before we link them together, each family member gets a stack of paper strips. We each write strips about the other people in the family. We write what we like about them, or something we enjoy doing with them, or just something nice about them.

So each strip has something about one member of the family, written by someone else in the family. Ideally each person can write about every other person in the family. We've gotten a *little* bigger than that, so I usually assign who each kid will write about by writing a name at the top of each strip - that's who you're supposed to write about. Even when the kids were little we did this, either writing down what they told us, or, as we do with David, guessing at what they would tell us if they could talk!

The the strips get folded so the message is hidden inside and given to me. I assemble the chain, which is, of course, red/green/red/green in pattern, because a random placement would drive me crazy! (I staple the links together.) Then each night we pick one kid to pull a link off and read it to the rest of the family. It's an amazing feel good moment and my favorite holiday tradition!

Latest Project

2011-01-08T18:29:00.000-08:00

I know it's been a while since I posted, and there's stuff to say, but right now I just want to post a couple pictures of my latest project. It's going to be a blanket to cover our fireplace and make it a gentler bump for David when he's exploring.

I started with these materials:

Here's the top:

Here's a close up of the quilting in progress. The middle seam hasn't been done yet - it will be the same pattern, but with green thread.

I finally finished the quilting today. I need to cut the binding and sew it on. Not sure when I'll get it done, but I'm excited it's almost there.

I'll try to post another time how I made the design - I think it's pretty easy.

David and his iPad

2010-11-09T20:30:00.000-08:00

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!

2010-11-09T20:16:00.000-08:00

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...

2010-10-24T15:38:00.000-07:00

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

2010-10-17T17:20:00.000-07:00

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

2010-10-17T17:12:00.000-07:00

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

2010-10-16T15:47:00.000-07:00

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

2010-10-16T12:23:00.000-07:00

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

2010-10-16T07:23:00.000-07:00

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

2010-10-14T14:55:00.000-07:00

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

2010-10-14T14:34:00.000-07:00

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!

2010-09-29T07:03:00.000-07:00

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)

2010-09-27T09:32:00.000-07:00

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

2010-09-27T08:31:00.000-07:00

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!

2010-09-26T08:42:00.000-07:00

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

2010-09-25T09:43:00.000-07:00

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

2010-09-24T17:00:00.000-07:00

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

2010-09-24T07:31:00.000-07:00

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!

2010-09-23T12:09:00.000-07:00

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?

2010-09-23T10:49:00.000-07:00

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

2010-09-22T12:47:00.000-07:00

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 _______"

2010-09-22T07:23:00.000-07:00

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

2010-09-21T09:13:00.000-07:00

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

2010-09-20T15:13:00.000-07:00

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

2010-09-20T09:09:00.000-07:00

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

2010-09-18T08:28:00.000-07:00

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

2010-09-15T12:49:00.000-07:00

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

2010-09-14T16:50:00.000-07:00

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

2010-09-13T16:18:00.000-07:00

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

2010-09-13T08:49:00.000-07:00

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

2010-09-09T16:09:00.000-07:00

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

2010-09-09T16:05:00.000-07:00

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!

Quilt Finished!

2009-10-09T06:07:00.000-07:00

It is finished! This is the front.

This is the back. Not nearly as lopsided as I thought it would be, but a bit off center.

Here's a shot showing the corner detail. It's about 45"x57", what we call a TV blanket at my house, or a lap quilt I suppose.

Now that the quilt is done I will rejoin my regularly scheduled life!

Wednesday Night & Thursday Day Quilting

2009-10-08T15:08:00.000-07:00

So here I am on Wednesday night hand tieing the quilt. Except when I was done with it I didn't like it. And it bothered me. And the back was very crooked to the front. And I was going to have to do a LOT of trimming to make it work. And I didn't like it. And that bothered me. I felt like I ruined my quilt.

So I got the kids off to school this morning and came home and looked at the quilt. Then I did some testing with some scraps and tried machine quilting. It looked like my machine and I would be able to handle it, so I carefully cut out all the ties I'd done. And I carefully repositioned the top, batting, and back. I carefully pinned. And I even more carefully machine quilted. And the front looks GREAT!

And the back... well, it doesn't look too bad in this picture.

There are a couple of puckers. But the big deal is that the back is shifted from the front. I'm not sure how that happened. But now I understand why every other quilt I've seen has a solid back. I'll post finished pictures when I'm done. I'm hoping to trim and bind tonight!

Wednesday Day Quilting

2009-10-07T14:08:00.000-07:00

This morning after dropping D off at preschool I went straight to the fabric store and bought sewing machine needles, black thread and some batting. Then I came home and did this:

First border around pieced front - tiny red strip.

Then I put on the 2nd and final border for the top. That's when I measured the top and realized it's an inch bigger than the batting I bought. By then I'd already emailed my mom about the batting and had almost talked myself into returning it anyway, so now I'll return it for sure. This time the batting will be bigger and NOT fusible.

After finishing the front I moved on to the back. I had a big chunk of red fabric. I trimmed off pieces to made a binding strip for it. (Let's hope I measured correctly...) and then I was left with a piece about as big as the pieced part of the front. I have 3 sets of strips to sew around that red chunk to make the back. The first strip is silver. I got that one finished just before I had to leave to go get kids from school.

This picture is the back laying centered on top of the top. This would have been my first choice of backing, but I'm out of black material and don't want to buy more. Actually, my true first choice would have been to just use one piece of material for the back, but I don't want to have to buy more, so I'm piecing strips. I think this part is pretty fun and it's going fast. I've got two more strip/rounds on the back and then on to batting and binding and tying/quilting.

Tuesday Night Quilting

2009-10-06T22:31:00.000-07:00

I sewed the squares together. Then I sewed the groups of two together to make 4 square blocks.

Here are the blocks of 4 layed out.

Then with much thought and more attention to detail than I thought I had I sewed them all together.

Here's a shot where you can see that I rocked out the corners. They are not perfect, but you have to look pretty close to see which ones are off a bit. (This was the part I was most worried about!)

Here's a look at the border I planned out. Much to my surprise, when I measured the quilt top and looked at my leftover materials, I have enough to make a big border and back the quilt! Here's the front border pictured. I mini strip of red paws and a wide strip of black. The back will be mostly the red plaid with a wide border of silver and then strips of black (using up the extras I cut). The binding will be the red material again.

Here's my trial strip of the red mini strip. On the quilt it will be between the quilt top and the black material. I just wanted to see how it would look sewn up. Good enough, I think.

I'm excited to get it done! I'm going to stop by the fabric store tomorrow and get the batting (and more thread and other general supplies) then come home and sew, sew, sew. I'd start tonight, but I'm tired enough that I'll make dumb mistakes and I don't have extra material!!

(Posted after midnight, in the hopes that my mom will look first thing in the morning! Love you, mom!)

Busy Monday & Tuesday Quilting

2009-10-06T18:13:00.000-07:00

I was excited to have my sewing machine back on Monday, but ended up having a very busy day full of everything BUT sewing. I got a few strips sewn together and then finished the strips Tuesday morning.

Much to my frustration, when I measured closely, the strips varied from 6 1/4" to 6 1/2". Ugh. They were supposed to be 6 1/2. The majority of the places I measured the strips they were 6 3/8". So I was supposed to cut 6 1/2" squares and I changed that to 6 3/8" squares. It's all pieced squares, so I should be able to get away with that. My plan is to make 4 square blocks and measure again and see where I'm at.

This bottom picture is the squares all cut, and some of them laid out in the pattern of the quilt. I'm going to go tuck Gladys in and do some more sewing. Tony got a new guitar and is really wanting to play it, so I'm excused from being social for the night. :)

Cutting is done

2009-10-02T09:09:00.001-07:00

I had a very productive morning! I even took pictures. Sharing here will save Tony from a play by play tonight. :)

Here you can see the strips I cut that I'll sew together to make the blocks for the quilt. (I am without sewing machine for the weekend, so this project is on hold until Monday...)

Notice there are two piles of black strips. After I cut out my "8 strips of dark material" I realized that I had the black folded in half... so I made two strips with every cut. I'll have to find a use for the extras.

Also, the new rotary cutter was totally worth it! And thanks to my mom, because she taught me how to use a rotary cutter a looooong time ago, and it all came back to me.

So here is the pattern I'm using. I was going to go for a rail fence, but changed my mind this morning and decided this would be more fun. We'll see how it turns out. I'm not noted for color selection.

Looking at the pattern, all of the middles of the boxes will be silver. The horizontal strips will be the red print and the vertical strips will be the black print.

Here is where I say "Never Again". Never again will I buy something so fussy to cut. Well, ok, if it turns out looking awesome, then it maybe was worth it. Cutting out the red strips, with little paw prints down the middle (school mascot is a panther) was a very time consuming task. I think the red alone took twice as long as the black and sliver together. Still, it looks good!

This is my scrap from cutting the red strips. They are less than an inch across, but I think I will find a use for them. Maybe in the border. I've never been one to follow a pattern 100%, and I think the border will be another deviation.

So, I'll be back on Monday with some sewing, I hope!

A Quilt Story

2009-10-02T05:34:00.000-07:00

Many, many years ago I started a simple quilt and never did finish it. I asked my mom to finish it for a birthday, which she did, of course. (And she did a wonderful job, too.) Anyway, I pretty much thought that was the end of my quilting career.

Then my mom and my aunt came down and I took them to some quilt shops. Picked out material for another quilt I want my mom to make for me. :) And I kind of got the quilting bug. So I made a couple of pillows.

And I really liked it! So quilting, in small doses at least, has proven to be very fun.

Then I remembered the school carnival coming up. And I decided... hey, wouldn't it be great to donate a fabulous quilt for them to give away? So yesterday I rushed around after Jazzercise to squeeze in a quick trip to JoAnn Fabrics before I picked Zeke up from school. I got the material then, and ended up going back with David in the afternoon and picking up a rotary cutter kit (with my 40% off coupon, thank you very much!). So I'm all set and hoping to get all my cutting done today!

(I don't understand the spacing issues going on, so my appologies for the funky layout today!)

Adoption Pending!

2009-08-04T19:21:00.001-07:00

We have an adoption date! On August 26 we will finish our year long trek toward adoption - 18 months after David entered our home, he'll become David Bockelman! Hooray! The pictures are from his first days here and very recently - how far he's come!

We've had a lot of people say that he's lucky to have us, and we truly feel like we are lucky to have him. We're looking forward to finalizing D's adoption!

In other news, a busy summer is over and school is looming in less than two weeks! Z will be in 4th grade, H in 3rd, G in 1st, and D will be finished with in home therapy services and going to half day preschool. I'm going to try to post more often for my mom, who doesn't want to join facebook. Love you mom!

Adoption News - moving right along

2009-03-24T10:59:00.001-07:00

Good news on the Adoption front. We meet on Thursday to discuss our adoption subsidy and sign an Adoption Placement Agreement. The subsidy is getting the paperwork done to insure that David will continue to get state medical insurance even after our adoption and figuring a monthly stipend. The Adoption Placement Agreement is the paper we sign to take David out of foster care and place him into our home as an adoptive placement. Most importantly, this is really the last step before court. So I'm guessing we'll have an adoption date soon. This is one more huge step forward! Hooray!

15 Year Afghan - Finished!

2009-03-01T18:08:00.000-08:00

I started this afghan about 15 years ago. It's actually the very first crochet project I ever started. That's 130 brown-eyed-susans/sunflowers crocheted over the years and finally assembled and border added. I still LOVE it. Much more now that it's done and not just hanging over my head!

My kids asked a lot "who is that for?" and, as always, this afghan is for ME. It's on laying on the couch now. Every memeber of the family has cuddled under it at one time or another! It makes me smile just to see it!

It's Finished!!!!

2008-12-04T21:32:00.001-08:00

Remember when I started this one? (It was back in January - you can see progress pictures in January and February 2008.) Well, I'm finally declaring it truly done. I obviously had some problems counting stitches and it was starting to ruffle a bit. I didn't really see my pattern through to the end, but I may try it again someday in a more friendly yarn. :) I like the way it turned out, though!

Quick adoption update - the social worker visited for our home study update. She's hoping to have that report turned in so that they can hold a "best interests" meeting before the end of year. This is where a team of people look at our home study and David's file and decide if they think we are the best adoptive family for David. We are one more step closer!!

Craft update - I have material to make the canopies for the girls' doll beds. I have the beads to string on Gladys'. I just have to want to sit down and do it! Random crochet projects keep calling my name!

Masterwork: The Snowman Hat and Adoption Update

2008-11-12T16:17:00.000-08:00

I think this is my masterwork to date. :) I made a winter hat for David that looks like... a snowman wearing a hat. He wore it on the walk to school on Monday and to and from Jazzercise and got tons of attention. It turned out really well!

Also, just a quick adoption update... we turned in physicals for T and I and for Z, H, and G. T and I were fingerprinted and already got clearance for that. Now the next steps are:

social worker updates homestudy we used for H's adoption last year
subsidy negotiation with the state
social worker submits our adoption packet to the state
the state approves the adoption
a court date is set
adoption in court

I'm guessing we'll be done by June. The stuff that's left isn't hard at all. It could probably be done in a week per step (except for scheduling the court date, that can take a couple months). However, everyone involved is very busy, so it wouldn't surprise me if it stretches out to June. I'll keep you posted.

The Bed Project

2008-11-12T16:02:00.000-08:00

So, the girls are getting dolls for Christmas. G picked out a ridiculously expensive bed that she really, really liked from the catalog. (Just $119, plus shipping and handling.) Yikes.

It is cute, though. So I did a little research and found this beauty at Walmart.com:

And it was $29.99 with free shipping if I was willing to pick it up at my neighborhood Walmart. (I was!). So I got two, one for H and one for G. Knowing I was going to trick them out to suit the girls' tastes.

Here is a picture of one of the beds put together, without the provided bedding. I also left off the arch that goes on the on the top of the bed.

I went to the craft store today and bought some beads for G's bed. I chose blue, red, and green, since that will match the blanket my mom is making. H's doll blanket will be more in the pinks and pastels, so I think I'm going to use the canopy and draping they provided, but I've got some really cute pink and white ribbon I could glue gun onto the side of the bed, and I think I'll add additional sliding curtains for the sides of the bed. I'm looking forward to this project that will be worked during the day while the kids are at school. :) I'm also finishing up some crochet projects, too, as well as trying to work in some Webkinz crochet requests. G got a new eagle. And informed me that it's a boy. So that's kind of a challenge to my creativity. :)

Happy Halloween!

2008-11-02T18:09:00.000-08:00

H, our bride (for the 2nd or 3rd year in a row!); G, our cat (she was a gymnast at school, but changed her mind by supper); Z is a Ranger's Apprentice, a character from a series of books he's been reading. (Oh, and I made the ranger's cloak on 10/30 out of an old sheet - thankfully we had one in oak leaf green, like the rangers wear.)
Here's D! This picture wasn't actually taken on Halloween, but he wore this outfit a lot in October!

I've been enjoying my normal October activities - Christmas shopping. I like to have it all done before Thanksgiving, so I don't have to be in then stores during shopping season any more than I have to! I'm doing pretty good, and should meet my goal. :)

T travelled twice in the past 2 weeks, and I am SO glad that's over and we don't have any more trips scheduled in the near future. Even with all the kids in school, and even with T's parents here to help, it was exhausting to handle all 4 kids.

Next up... flu shots for the kids. D should have his on Tuesday and the rest a week from Monday. That will be quite an adventure. G has major issues with shots, and Z is nearly as bad, and H has issues with people crying because they are hurt. So it's a pretty messy combo, but I refuse to make 3 separate trips. :) I'll let you know how it goes...

D continues without IV meds. I may hear more about that on Tuesday.

Finally, on the adoption front, we got our fingerprints taken - and now wait 6 weeks to get results back, and we got our physicals done. Our homestudy will be updated, and then we move forward...

Crochet for Webkinz!

2008-10-27T21:20:00.000-07:00

I've had quite a break from crocheting, but got the urge a while back and have been doing small projects off and on, mostly webkinz clothes. I finally got some pictures taken and thought I'd share! They are featured below in the order they were created.

First up is a strappy green dress worn by G's Jewel. The skirt is nice and fluttery. I actually made the skirt a while ago - back when I crocheted for H's bigger white teddy bear. Jewel wore just a skirt (which was quite cute on it's own) until I finally attached the dress top that G requested. I think it may have been cuter just as a skirt, but it still turned out well.

Next up is this wonderful blue dress worn by H's Cupcake the panda bear.

The side view shows better how cute it is. I made it with some "Elf Eyelash" Hobby Lobby yarn and that was a nice challenge. (and no, I will not be making anymore items out of elf eyelash - though the white would make a nice trim on a santa hat) It *is* quite soft, though, and wonderfully set off by the two white stripes. I added them when I thought I was done, and they took it from a minidress to a ball gown and much improved it!

Z's koala, whose name I can't recall right now is wearing his fuzzy black sweater with skull emblem. The skull is the only thing I used a pattern for and it didn't turn out that well (maybe I should have acutally followed the pattern? eh.) Thankfully it's a big hit with Z and Claw. Oh! Claw! That's his name. Claw the koala. Hope I got the spelling right. Sorry Claw!

One more note on Claw's sweater - it has a matching fuzzy beanie/skull cap, but it doesn't stay on very well. I may have to put on a strap and change it into a helmet.

Here we have G's 2nd webkinz, Snowy, modeling her birthday dress. I really felt like I made quite a step forward as a designer, taking advantage of the plain-ness of the yarn to show off some intricate stitch work.

This back view shows off the halter tie nicely. It matches the bow detailing on the front of the dress and the nice hair bow as well. G picked out the yarn, which really is a good color for Snowy. The dress was a birthday present to G, and was very well received.

Here we have H's newly earned reward, Cuddly the manatee. I was immediately inspired by Cuddly's natural body shape to go with a mermaid cut gown. The yarn choice was a no-brainer, because if H likes this yarn (which she does) she may as well have it, since I can't imagine anyone else who would! Although, now that it's done, I feel like it would have worked up nicer in a solid colored yarn. The varigated coloring makes it hard to see the flower detail up near Cuddly's head.

While this photo doesn't show Cuddly's face very well, you can nicely see the mermaid shaping with a double ruffle at the bottom. The ruffled detail wonderfully sets off the shape, and also used up nearly all of this *ahem* wonderful yarn. I also like the way the yarn comes together up the front, in a nice inverted v, which adds some unexpected sophistication to the gown.

I'm not sure what's up next. My own elephant, Electrona is without any special occaison wear (or any other clothing for that matter - you know what they say, the cobbler's kids always go with shoes!) But Z also has a lizzard, and a bat, and a couple others, too. I think the bat may be next, as I'm intrigued to work up something boy-ish and able to work around his wings...

Home Again, with a new diagnosis???

2008-10-04T08:40:00.000-07:00

Well, we're home again. However, just before D was discharged we were thrown for another loop. They'd run some blood work to test for some wierd and rare immune system issues and one of them came back positive. They were so surprised they ran the test again the day we left, and it was positive again. My initial google research showed some pretty grim findings, but I was able to calm down when I considered that this is something he's had all along, not something new, and he wouldn't necessarily have all the lifethreatening conditions google listed! And on the plus side, now we had a name and treatment plan for the multiple infections he'd had.

And just as that was sinking in, I got another phone call from the doctor, this time saying they were considering that the tests might be showing a false positive, due to the way D's body works with rickets. So, they are not sure now. However, thankfully, they can do a genetic work up and look for specific gene mutations that will tell them whether he has this condition or not. So that's good news, although I think the genetic workup takes a while... So. We wait.

In the mean time, he is tube free while the doctors sort all this out, which means a lot more freedom for D and our family. And we plan to enjoy this time!

AND D is trying to crawl! He gets up on his elbows and knees and rocks and rocks! It's so fun to watch!

All else is well. We're glad to be home!

Hanging in there

2008-09-28T07:29:00.000-07:00

We've been busy. We got our answer and it was that D has to stay in the downtown hospital on IV meds. *sigh* He is doing fine, though a little cranky yesterday - we're chalking that up to teething. I think he'll be home on Thursday.

T's parents are in town -T and his dad are at the Nascar race today - and they are going to stay until Wednesday. That will be a great help and let me stay at the hospital each night, I think.

H is sick now, she threw up last night and early this morning. I hope she gets to feeling better soon! Though, I must admit that I enjoy a quiet and cuddlly H!

Extended Stay

2008-09-23T13:18:00.000-07:00

So it looks like an extended stay. Unless we can get D's meds changed to oral medication rather than IV. We may know that answer by tomorrow. If he has to stay in for 7-14 days of antibiotic treatment we're trying to see if he could be moved to the hospital closer to our house.

After that, though, they are talking about a month off of IV meds of any kind, including calcium. That will be a welcome break.

It's so hard to hear them even talk about putting in a central line. They can't say exactly what is causing the infections, but they can say that he'll move slowly but surely downhill without his calcium treatments. So, even if they can't give us a source of the infections... we may have to put another port in! I wish I had some guidance. I feel like Tony and I are the only ones saying, "Wait, Stop, Think".

It's like when I play euchre with really good players who count cards, and they reach some point in the game in just throw their cards in, because they know how the last trick or two will go. I always make them play it out so I understand. I feel like I'm having to speak up the doctors and say, wait, I can't see all your cards, explain to me...

Hospital Again!

2008-09-21T12:01:00.000-07:00

D had a low fever on Friday morning, it was gone in the afternoon, but then spiked up to 103.9 at 6pm. (His hickman site was looking icky, too) :( So I took him to the ER and he was 104.4 by the time he was seen. They admitted him for fever and possible line infection. The infection was confirmed 12 hours later, and his site looks worse and worse. They were saying Saturday that it had to come out. There have been complications (on the hospital's side) in getting the correct paperwork done for some foster care issues (ugh!) but it will be removed tomorrow...

Power Outtage

2008-09-17T16:04:00.001-07:00

On Tuesday morning around 7:15, just *before* I started making H's oatmeal, and just *after* I heard the toaster oven DING that my toast was done... the power went out! H was already awake and downstairs. The power being out was baffling to her. She was amazed by everything that wasn't working. We tried to explain it. When I opened the door to the back yard to check out the temperature... "Hey! The batteries are still working out there!" And I didn't really know what to say, because the sun just... is. It was an entertaining morning! The power didn't come on until just before we left for school at 8:15am. G was convinced that someone went into her room and shut off her fan!

Hickman Problems

2008-09-15T12:45:00.000-07:00

So here's a picture of hickman #2. I noticed some pus by the stiches and several small blisters around the hickman site, so I made calls this morning and ended up driving downtown to see a surgery doctor there. He didn't think it looked infected, though he couldn't rule that out. He thought the pus I'd seen was likely from the blisters, which were likely an alergic reaction to the tap and window bandage. *sigh* Basically he said to go home and come back if it got worse, and don't use tape around the edge of the bandage.

I really, really hope he's right and it's not infected. I wonder, though, because it looks just like it did in the early days of the infection of hickman #1. And I feel like I felt with port #2 when I would see something wrong, but take him in and everything looked fine... So we'll see what comes of this.

Locked in at Target

2008-09-13T09:50:00.000-07:00

On Friday I brought D home from the hospital with a prescription for Tylenol with codine. When Tony got home I took off for Target to get a break from the kids and pick up the medicine. By this time D was cranky and I was feeling very badly that I hadn't just taken him with to get it sooner...

I dropped off the prescription, thinking to myself that never again would I be at the pharmacy at 5pm on a Friday... it was so busy! I was wandering through Target, killing time while waiting for the prescription to be ready when the overhead speaker came on.

"Attention Target shoppers, the national weather center has issued a Tornado warning for this area. Please move away from all doors and windows and take shelter in the back of the store in the domestics department." I looked around and everyone continued to shop, though a few whipped out their cell phones as I was doing. I texted T, who told me where the tornado had touched down, which was a ways away. I didn't want to leave without the pain meds. Since it was time, I went to the pharmacy where there was now a LONG line. The front cashiers were still working, as was the pharmacy. People were checking out and leaving, so I waited for my prescription. The announcement was made a few times over the next 10 minutes. I got a phone call from Tony and we discussed if I should stay put or drive home. At that point it seemed safe to go home. A couple minutes later a Target manager caleld over the employee's walkie talkies and told them to shut down and procede to domestics. I was next in line, and I was surprised, but they actually checked out my prescription as they locked down the pharmacy and we all went to the back of the store. I decided if Target was going to shut down I wasn't leaving. Actually, I'm not sure if I would have been allowed to leave.

It was so wierd! No one was panicky. Almost everyone was on a cell phone. I sat on the floor in a carpeted section. It was just surreal. One Target employee had a weather radio. About 15 minutes later an informal announcement came over the employees' walkie talkies. The person just stated where the tornados were and that our area was considered ok and they could go back to work. The funny thing was, there were so many employees all together that the announcement was louder than the overhead would have been. Such a wierd time! A funnel cloud had touched down not too far from the store; I didn't hear of any significant damage. I guess there were several small, short tornados across the area, with no loss of life or huge damage done (easy for me to say). Just a very wierd experience! It was nice to get back home and get hugs from the kids, venturing up from the basement with T.

Home Again with Hickman #2

2008-09-12T11:27:00.001-07:00

(first off, a disclaimer - this is photo of hickman #1 - I'll try to update soon, but I'm not going to upset D right now by trying to take a picture of his hickman. If you look in the picture you can see a scar under his nipple on the right side of the picture. They put the new one in right by that scar)

OK, so here's a quickie version this hospital stay.

Thursday

11:30am Arrive at hospital, check in

12:00 pm get taken into presurgery area. D is weighed, measured, vitals taken, etc. We're put into an exam room to wait

12:40pm the anesthesiologist checks in for his presurgery visit

1:15pm the surgeon comes by for his presurgery visit. I have lots of questions, and he actually sits down and talks with me. None of the hickman options the other doctors and nurses have discussed with me are possible or likely to be helpful. I explain my concerns and problems we had with the placement of the last port. He listens attentively and offers to try to place it as much off to the side as he can. This sounds like a good solution to me. We also discuss infection control. Again, though others offered up a lot of ideas, when it comes down to it, there is nothing that can or will be done. The surgeon will give IV antibiotics in the OR. We'll be extra careful at home. That's frustrating... I check with both the doctor and several nurses and am assured that D will be admitted to the hospital after surgery.

1:40pm D goes back for surgery

2:40pm he's out of surgery. The surgeon checks in with me. All went well. No problems

3:40pm they call me back to see D and usher us into the recovery area for kids going home (normally we walk to his inpatient room) When I ask the nurses they tell me the doctor changed the orders. I ask to speak with the doctor. They sit me in a rocking chair and put D in my arms. He is completely out, never even opens his eyes or moves a muscle. My arm goes to sleep. It's nice to cuddle him, but he doesn't even know I'm there... there's no bed to lay him in.

However, my rocking chair is close to the nurses station, so I overhear a lot. They page the surgeon. He tells them to page the fellow (this is medical jargon for surgeon in training) who changed the orders and let her know that D can be checked in. They call the fellow, who is apparently quite irritable. Orders are changed, but not put in the computer correctly or fully and they have to call her again to let her know she needs to add on that he can't have food by mouth, and that she didn't order any IV fluids. She doesn't want to make changes (and is apparently yelling in the background) and tells them to remove the IV. The nurse takes out his IV along with removing all the tape they used to cover it and immobilize his hand... he never even flinches, and only opens his eyes once.

While I"m waiting I check out his new hickman. What??? They have placed it about 1.5 inches away from his feeding tube. He used to have a port there and it was a nightmare to keep clean, as ooze from his feeding tube was constantly getting on the bandages... So I guess the nightmare is on again. I overhear the surgeon fellow's name and try to remember it.

5:00pm we taken upstairs. Because D is too heavy for me to carry, we pull him up in a hospital wagon. When we get to the hospital room the bed hasn't arrived yet, but D doesn't care, he's still OUT. He gets checked into the new room. His bed arrives. He sleeps through being weighed and measured again.

7:00pm D wakes up and is playing a bit. He seems to be in pain so he gets some pain meds. He plays happily, sits on my lap, and starts a real feeding!

10:30pm I turn the lights out and D falls asleep

Friday

6:00am I wake up so I can catch the surgeon doing rounds and talk with him/her.

6:15am Surgery rounds - I check out her name tag (surgeons rarely introduce themselves) and see that it's our special fellow. Unfortunately I haven't spent enough time thinking about what and how I want to say the things I want to say. I show her how close the hickman is to the g-tube and she says something about how they have to go with the vein they can find, and they did their best. (At the time that shuts me up, but later I realize they didn't even try the other side... ) I think in my head that I want to ask her what the fuss was about the day before, and why she tried to send D home, and why she didn't talk to me about it ever, but I can't think of the right words and she seems to be in a hurry, so I say I don't have any more questions, and she leaves. I immediately think of many more questions, of course.

11:30am D is discharged from the hospital and we come home.

OK, so that wasn't a short version. But it was venting for me. I didn't put in nearly enough about how awesome the nurses were, and wonderful they are with D and how well they handle the doctors. We are home again, and that feels good.

Adoption Post #1

2008-09-03T11:52:00.001-07:00

I was just reading through my past blogs. It was very cool to see

the posts about what we were going through when considering to foster again. So I decided I needed to do a little blogging about D and us wanting to adopt him.

When we accepted placement of D we'd heard that he was "adoption track". But that can mean a lot of things. I simply verified that we were in no way saying we'd be an adoptive placement for him. We weren't looking to do that. We just figured we were pretty good at the fostering thing and we should do it. I guess that wasn't God's plan.

So, we fell totally and completely in love with D. Fast. I couldn't believe it. About a month after he was with us I finally had time to read his entire file and I realized that not only was he "adoption track" but that he was already available for adoption. His parents' rights had been terminated. That's a sad and happy thing. Sad, because I don't want to think about what his biological family is missing and what they must have gone through. Happy, because terminating rights typically take a LONG time, and that part was already done for David!

However, adopting a child with significant medical needs, not to mention developmental delays is, well, a significant decision. So we decided to take our time with it. A conversation with D's social worker put us at ease in taking our time to make this decision. So we started thinking and praying. It just seemed so, I don't know, STUPID, to even consider something like this. Honestly, my heart was already sure, it was my brain that was questioning. And T played his role as the rational part of our partnership. :) So we prayed and thought.

Well, in July a few things started falling into place. We got a new home nurse who we knew would be short term. That was a little frustrating. Why even bother? But she turned out to be FABULOUS. AND she had adopted a special needs child from foster care. I learned a LOT from her in the time she was here.

Then we went away to family camp at Camp Luther. The pastor in charge of chapel was someone I hadn't met before. He introduced himself, his wife, and their grown daughter to the whole camp. I immediately knew I needed to talk with them. Their daughter has some sort of developmental delays. She lives apart from her parents now, in an assisted living facility. They adopted her when she was a little older than D. I introduced myself to the mom, and we spent pretty much every afternoon in the shade outside the camp pool talking about their decisions and ours.

We'd prayed to God for guidance, and got these wonderful helpers to answer questions and help us think about our decision.

Then in late July, since we didn't have a home health nurse, I took D with me, Z, H, and G to see a dollar movie at the theater. It was Clifford's Big Movie. D loved it! I texted T to tell him it was a hit. He could just imagine D on my lap, laughing at Clifford. He texted back and asked "Is he laughing" and I texted "Yes!" That afternoon we made the call to D's worker to start the adoption ball rolling.

We got our first set of papers in early August. We signed away permissions for our driver's license checks, child abuse registry checks, FBI checks, etc. We gave them earnings statements. I've since then gotten Z, H, and G's health forms filled out. T and I need to go in and have physicals done. D's social worker is getting a copy of our homestudy from H's adoption. She'll just have to update it since John has moved out and almost a year has gone by. That should be fairly quick. I asked her if we might be in front of the judge for the adoption by the end of the year. Probably. So, based on past experience, I'm hoping it will be done by June 2009. I'll keep you posted on our progress.

Crocheting for H's Bear

2008-09-03T11:39:00.000-07:00

This weekend H was feeling sick. Cold/Asthma double attack that left her short of breath and feeling cuddly. (See previous post to know why we appreciate this!) I was tired of the chain reading I'd been doing, so I got out my crochet basket and worked on a baby blanket I'd started during D's last surgery. H asked if I could make a dress for her bear. That sounded infinitely more fun. Plus, she immediately spotted some yarn that I wasn't sure what in the world I would use it for. (Hand me down yarn, I love it!) Anyway, as you can see above, the dress worked up cute!

But then H started a landslide by asking "Can you make her some fancy pants?" (That's what we call shorts under dresses- we wouldn't want to be able to see the bear's bottom!). So I was able to whip those up (please note that I made a tail hole!) and that was followed quickly by some mary jane shoes and a fancy headband. H was so happy, and so was I! I love quick projects, and even more than that, I love projects that are appreciated!

Of course, G chimed in then, wanting a dress for her webkinz. She also picked some yarn I was wanting to use up - some bumpy bright green. That worked up really fast, because it's so thick. I only got the skirt made up - I need to dig through my closet and find the matching balls!

Emotional Milestones

2008-09-02T21:12:00.001-07:00

As parents, we read about developmental milestones and watch when our babies reach them. Good parents even make notes in a baby book about when their child did certain things. Great parents do that for their younger children, too, not just their oldest! (Hey, at least I'm a good parent!)

As foster parents we recognize emotional milestones. Cuddling has been one for us. It's pretty remarkable how much I took for granted Z&G's cuddling abilities, and their willingness to fall asleep in our arms. I don't think I really savored that as much as I should have, or realized how much of a sign of trust it was. Though, I'm greatful they had no reason to ever not trust us!

These pictures of us with H were taken in May of 2007. That's about 2 1/2 YEARS after she joined our family. They were the first times she fell asleep in our arms. 31 months before she was able to really cuddle and totally relax. When I look at these pictures, I can't remember what I did to get sunburned, but I remember exactly how I felt holding her relaxed body. I remember that I cried, and I remember that I MADE T get the camera to take a picture, even though my legs were asleep.

Our foster son D, is a pretty special guy, and he's fallen asleep in our arms from the beginning, but he wasn't a real big cuddler. He would fall asleep more sprawled across our laps than cuddled in. But a couple weeks ago it happened. I picked him up out of his carseat while he was sleeping and lifted him to my shoulder. Normally he stiffens up and arches his back, looking around to see where he is, pushing out with his arms to keep from getting too close. This time he collapsed bonelessly onto my shoulder and drooled on me. :) I cried. And I stopped everything and cuddled him. Who would have thought drool was so special? Now he does it almost every time I pick him up. For a minute if he's sleepy, for just a second if he's awake. I can't describe what happens in my heart. Sometimes it still makes me cry. But I think you're allowed to do that at emotional milestones!

And Now I Take Away... your hickman

2008-09-02T21:09:00.000-07:00

Unfortunately, D got another line infection. That's an infection in his blood that infests the tubing the IV access (aka, the hickman). So just over 2 weeks after having it put in, they had to remove his hickman. He's completing a course of antibiotics and then they'll get ready to try again. :(

Believing in your own worth

2008-08-18T19:33:00.000-07:00

So, after reading the Twilight Saga, which I thoroughly enjoyed, our babysitter and former foster daughter, Natalee recommened I read A Great and Terrible Beauty by Libba Bray. I enjoyed it and read its sequel Rebel Angels. The books are about a group of girls who discover a realm of magic, back in the 1800s. It is a really good story, and pretty thought provoking, too. Each novel has discussion questions at the end, as well as an interview with the author. One of the questions was about whether or not society today limits girls like they were limited in the 1800s. Here is a partial quote from the author:

“These limitations are reinforced by our culture, but we, as women, also play along. And it would be good for us to stop doing that, to stop that relentless comparison and self-flagellation and start enjoying who we are and what we bring to the table. I remember reading a quote somewhere that said, ‘How much more could women accomplish if they didn’t spend so much time trying to fix themselves?’ That really made me stop and think. I think we need to stop operating as if there is something wrong with us, as if what we have to say needs to be prefaced by “Um” or “I’m sorry” or “This is probably stupid but” or some other words that communicate our lack of faith in our own power. Own it, man. It’s all you and it’s all good. And if you find out you’re wrong, well, so what? Own that, too. But I think you first have to get comfortable with the idea that when you go your own way, people may dislike you for it. And you have to be able to tolerate that. “ (From end notes in Rebel Angels by Libba Bray)

This just really stopped me in my tracks. I feel like I'm doing and have done some wonderful things in my life. Yet my thoughts are so often self-degrading and condemning. And I think it's about time I accept my good attributes with as much ferocity as I hold onto the negative ones with. Give myself a pat on the back once in a while instead of looking for faults. Thank God for the skills I've been blessed with, the opportunities I've been given, and the good I've done with God's help rather than pray for God to fix something I think is wrong with me. (Not that I can't ever want anything "fixed" but rather finding that balance...)

I have some good friends who I really look up to. I see them as examples of the self confidence I hope I'll have more of in the future. Vastly different women, but women who don't appologize for how they live their lives, or the fact that their lives don't meet some standard set forth by... whoever. I feel blessed that God has given me so many friends like this. I'm surprised it took me so long to realize why I'm so drawn to them. But thank you, God, for putting them in my life!

And Now I Give You... a hickman

2008-08-18T18:52:00.000-07:00

So, my last post was just after D's 7/25 surgery to put in a new port. Well, by mid August he was having problems again, and this time it turned out that it had slipped out of the vein it was suppoed to be delivering medicine to. So, off to surgery again, and this time trying a different type of vein access called a hickman. I did a quick Google on hickman and found the picture above. Obviously that's not D's hairy chest. :) But it's very similar to his hickman - except he only has one tube, not the two that this guy has.

The surgery went well and his recovery was better this time than any of his previous surgeries. I'm just really hoping that we can make this one last a LONG time and he won't need another surgery... for a year???

Forbidden Fruit

2008-07-26T20:11:00.000-07:00

D had his surgery yesterday. Previous experience had me expecting that he would be groggy and take 12-24 hours to recover. I talked with the nurses about this, and they agreed that he should be admitted as an inpatient. The surgery doctor had a different opinion, though, so we had to "wait and see". So, after he was still sleeping 2+ hours after surgery, and still needing oxygen... they admitted him and we stayed overnight. He's recovered well and we were able to come home this morning. I was glad to be at the hospital overnight.

But... that left T home with the other kids. And he was about to pull his hair out! At work he has missed a lot of time this week so that I could take D to the various "car mechanic" appointments. And this on the week following his vacation, when things are backed up. And the kids at home... sheesh! At least knowing they are driving him crazy makes me feel not so bad! It's not just me!

I guess up until this past week they have been very busy with one camp or another. Now all we have going on are swimming lessons (and, apparently, fighting). I bet this is what my sister and I did to our mom, and I really regret it now!

So, with both of us at our wits' end, it was time to pull out the big guns! I promised a trip to the pool and then threatened not to take them if they didn't shape up! :) We actually made it to the pool pretty fast, but were only there less than an hour before we heard a loud rumble of thunder and they closed the pool! This absolutely was not long enough for T to get work done at home, not long enough for me to read at the pool, and certainly not long enough to wear them out! Plus they whined at *me* about the pool closing! Like I can control the weather! And all this while making snotty comments to each other and trying to make each other cry.

So I got creative... I forbid them to play with each other. Let them know that I'd bring them each up a box of toys from the basement, but they had to play by themselves for the rest of the day. And... it worked! The house was so quiet!! And by supper time they were begging to play together! (and I didn't give in!) After supper we played some cards together and had a good goofy time - and they were less hateful to each other!

So, now we have another tool in our parenting tool box. And another great memory was made, too. H has a habit of repeating lines from movies or tv shows. The thing is, they are often mispronounced or have words switched, and they are never spoken at an appropriate time. For example... tonight we were playing go fish. When H told T to go fish and he sighed at her she snapped back "Don't look at me! I'm a chicken wing!" And laughing with her about it just makes it a household phrase... it was used several times before the night was over!

Four for Four

2008-07-23T20:13:00.000-07:00

So today was our fourth day with a visit to the children's hospital, and the mechanic finally heard the noise. The bad news is that D will need another procedure sometime in the next week. The good news is that he's off his home IV until the procedure... so no nurse needed. Much more of a normal kid scenario.

It never ceases to amaze me how surprised the doctors seem when parents are right. In this case I wish I'd been wrong... but at least we know what's going on now and they are making a plan to fix it. In the mean time I'll enjoy my tube free kiddo! :)

It's like taking your car to the mechanic

2008-07-22T20:29:00.000-07:00

I can remember a time shortly after T and I were married when my car was having problems. I described to T what was going on. We even traded cars for several days. But the problem never happened when he was in the car. And soon it felt like *I* was the one with the problem. And now I'm feeling like that with D!!!

On Sunday I took him to the ER with a problem with his IV port. They saw the problem there, but needed us to come back Monday for an x-ray exam. When we got to x-ray the next day... you got it, everything was fine. So they sent us on our merry way. And today, Tuesday, problems again. 2:10pm I called the doctor's office. Ugh. D's nurse wasn't in. Talked to a sub. She wants us downtown asap. No way can I take the other 3 kids downtown. So I found a sitter, took all three kids to pick her up while D's nurse got him ready to go. Brought the sitter home (I love N so much!) Got D loaded up and headed downtown. I was there by 4pm - including the 45 minute drive. I called them on the way and the nurse was disappointed at how long it was taking me. Again. Ugh. I felt like I'd run a marathon, but "the doctor really wanted you here by 3:30". I bit my tongue, but I really wanted to let her know what *I* really wanted.

Among other things, I really wanted them to do the x-ray test the minute I got there. Instead we chilled in the waiting room and were finally taken back, weighed, measured, etc and then the vascular access team (IV/port experts) were called to take a look. Wow! The problem really was there, just like I said. But, oh no, radiology is closed. So I'll need to come back tomorrow so they can do the x-ray exam again! I'm betting he'll be fine again tomorrow...

At least I have enough notice to pack a bag with snacks and a good book to read while I wait. Because if there's anything else I'm sure of, it's that they'll have me rush into the hospital and then have me wait. On the bright side, if I was the one at home with the other kids my book would be on the shelf... :)

Catching up

2008-07-21T20:28:00.000-07:00

Just a quick catch up post...

Tony started a blog. I like it. Link on the sidebar.
New home health nurse. I love her. She'll be leaving soon, but she's training in her own replacement. I think we may even be friends after she leaves. :) She's been a foster and adoptive parent to a kiddo with special needs.
Had a GREAT week at Camp Luther!!!
Met a couple at camp with their adult daughter with special needs. Had great talks with them and hope to stay in touch.
Feeling like God is sending us all the support we need to make a big decision...
Z, H, and G are taking swim lessons this week and next.
D has stayed out of the hospital so far this month... with the exception of an ER visit last night... doing fine today. False alarm, I hope.
Been a while since we talked with or seen J (he moved out last month... on good terms) I miss him.
Just three weeks until we go to Wisconsin to visit my family! Just five weeks until school starts!!!!
I read the Twilight books by Stephenie Meyer. I have a new obsession!
Did I mention I love Camp Luther??? We had a blast! (with very few exceptions...)

I'll try to post more soon.

No Nurse

2008-07-01T17:20:00.000-07:00

So, after D came home from the hospital I had some issues with our home health nurse and finally decided I was done worrying about whether the care she was giving him was good enough. Now we have no nurse.

Our new nurse will start next Thursday. This will give me plenty of time with D, and I'm happy about that. I would guess that by the time she starts I'll be desperate to have her here. But right now I'm really enjoying being able to take care of D all the time! And hoping that I'll have a better relationship with our new nurse.

Back in the Hospital again

2008-06-21T11:08:00.001-07:00

Well, in my last post I wrote about how I knew I needed to leave D with his first fostermom. I really did need to. He ended up in the hospital. Within 24 hours of her picking him up, he had a fever. By Sunday afternoon she was taking him to the ER. He was admitted with another line/port/blood infection. :( After much consideration, T and I decided that we needed to stay and finish out our vacation with his family. (OK, T was the one with the clear head, and said it was the only decision we could make, and he was right. I'm glad he was there to make it, though, because it was tough.) Still, we knew D's first foster family would take good care of him, and they did. It was especially nice to know they were with him, because it sounded like a pretty chaotic night in the ER and admission. And chaotic is NOT what you want when your kiddo is in the hospital!

Anyway, we're back at home, with Z staying with T's parents as planned. J moved out into his apartment yesterday, and at the same time G and H spiked fevers and are definitely sick! This is more excitement than I need! T and I are back to splitting time between the hospital and home. Our volunteer grandmas from church are back on the job giving us breaks at the hospital.

Thankfully, D is responding well to medicine and is back to his normal self. They got us a mat to put on the hospital room floor and he loves to roll around on it! He's even rolling a new way since he was admitted! (Before he only rolled to his left - last night he rolled to his right! That's our boy!) Yesterday there was a moment that can only happen in a teaching hospital, I think. There was a doctor in by herself to do an evaluation and a nursing teacher and 2 nursing students changing D's IV meds when another team (one senior doctore and two juniors) came in. The doctors were talking back and forth and with me, and D was just flirting like crazy with one of the nursing students - laughing, grinning, and kicking the bed hard enough to make himself bounce! He's a fun kid!

So, we're back to our inpatient/busy lifestyle, and hoping it will end soon!