More Info about School

The school the boys will be attending is within walking distance of our house!  I am so excited about that, because I hope to be able to walk down there and pick them up instead of getting in the car and waiting in a huge line like I did for Hallie (a foster child we had).  It is a super nice school; we had a good experience there when Hallie attended.  We will go over there probably on Monday and see what we need to do to get the boys tested and enrolled.  We are going to push to put them both in first grade and do some pull out SpEd as needed until they get caught up.

We're pretty sure that after the initial adjustment phase, they will both love school.  They loved Awanas and missed getting to go when I decided that I needed to rest on Sundays, and we think they will react the same positive way toward school.

Joey will love the P.E., and I anticipate that Chris will enjoy music class.

I think school hours are 7:45am to 2:45pm, so they will still have a good chunk of the afternoon for playing.

We're looking forward to what fall will bring!

Big Changes

There have been a few times in the past that my life has changed dramatically.  I remember when Kim broke her leg and I had to stay with the mean neighbors.  My world was shattered and I don't think I have ever completely recovered.  Then when Kim got hit by the truck, I blamed myself for the longest time (probably still do) and I also started to be afraid of things that hadn't previously scared me.  I've always taken on the role of caretaker.  When Kim was in college, it was I who make sure her phone was plugged in to charge every single night, and it was I who asked her every morning, "Do you have your phone?" when I probably wasn't even awake yet.  Each night after I did my solitary 400 jumping jacks in the living room, I'd walk through the house and make sure the floors in front of each door were cleared so that if we all had to escape the house in the night, we'd be able to get out quickly. 

Even now I feel like so much rests on me.  So much responsibility is my responsibility.  I have three children each with needs that are out of the ordinary.  Not a single one of them is an easy child.  Sure, there are parts of each of them that are easy, but other parts are hard.  I have the responsibility of driving my husband everywhere he needs to go, and even though I love it, it's a time commitment and a responsibility that I am not willing to delegate to anyone else, mostly because I am afraid someone else will involve him in a wreck and he won't ever come home again.

The medical care of each child in this home rests on me, and they each have their challenges.  Ilse, obviously, has the most, but Joey has some health issues too.  And Chris has ear issues and emotional issues (Joey does, too).  We also watch Chris' blood pressure, although that seems to be resolving itself. 

Tim needs surgery and I am simultaneously looking forward to it (because the goal is less pain for him) and dreading it (because there will be rehab, hospitals, waiting rooms, babysitters, etc..  I'm a pro at hospitals (or so I tell myself) but I despise waiting rooms, and rehab means more driving.

So, I've been looking for ways to simplify our lives so that my stress level and responsibility level comes down to more what a cardiovascular surgeon might experience instead of what a Navy Seal in a war zone would experience. 

I've found lots of ways.  I'm looking for a nurse who will truly make me feel relaxed the few hours a week she comes to take care of Ilse and give me respite.  I think we might have found one!  We started eating low carb and so I have more energy.  I've started sleeping much better, longer, and deeper.  I've been more connected with new friends who understand my lifestyle and emotional needs.  Hope's Seed has been a tremendous blessing to me and others.

And now, my life is going to change in even a more dramatic way.  We've decided to send the boys to school.  I guess that seems horrible to some, but we know it is the right choice, at least for now.  It might be temporary or it might be permanent.  We don't know and we are going to take it as it comes.  This is the right choice for their education and for their future.  It will be a huge adjustment for them, though, and it will be hard for all of us.  Ilse will miss her brothers, I'll miss them, (and their help!) and even the boys will probably feel insecure and their behavior will probably regress.  We're going to work through it, though, because we believe this will be for the best.

I've never been a mom to a baby only before.  My days will seem strange!  I went from just being alone all the time during the day, to being a mom to two wild boys, to being a pregnant mom to two less wild boys, and then to being a mom with a medically fragile child and two unbelievably wonderful boys.  I told Tim that I'm not sure how to be a public school mom.  I'm not sure how to be a mom to one child during the day.  How do you even go shopping with one child?  She's not really sitting up, so I guess I will be pushing a stroller and pulling a basket, which was dramatic the few times I've done it.  I think I'll feel like I'm forgetting something/someone for a long time.  But, this is one area I need to let go of being the caretaker of, and let someone else bear the daily responsibility for carrying out their education.

I hope we'll all adjust with a minimum of difficulty and pain.

We know the Lord is with us, guiding our decisions.

And we're thankful for the insight and peace He gave us as we made this decision.

Gave up

I gave up watermarking my pics.  Or really, I gave up having my posts down while I watermark.  I'll just get to when I get to it!  :)

Watermarking!

Apparently there are unscrupulous people in the world!  Who knew!  ;)  In order to protect our family, I'm going to make all my blog posts drafts again until I can watermark the pictures to prevent their being stolen.  It will take a while.  Thanks for being patient!

I experienced grace today

It's been a long time since I got to sit with Tim in church.  It's hard, finding a place for the stroller to go, a place with four chairs, a place I can get out of easily, a place that's in the back so people don't get distracted by the potential barf catching, the nose wiping, the feeding, etc..

Last night Tim and I worked so hard to get to bed early so we could get to church on time.  I made Ilse's blend, I got her diaper bag ready; we were good.  It was still late when I got to bed, though, and I was up in the night with Ilse, but Tim still managed to get me out of bed this a.m. by promising me coffee.  So, we rushed.  We rushed and we got out of the house only 30 minutes after we had wanted to.  We had time for coffee and we got to church 15 minutes early.  Yes, we did give ourselves tons of extra time, because we know how hard it is to get out of the house with this Ilse.

Then, there were no seats where we could sit together, with the stroller, etc..

I lost it.  After all that work, all that preparation, NOT to get to sit by my husband?  I just couldn't handle it.  I retreated to the nursery where I cried my eyes out. 

My friend Laura found me.  She loves me.  She hugged me and then she took the time to fix the problem.  I was so grateful.  Humiliated, but grateful.  She showed grace to me.

When we were on the way home, Tim told me that next time we just need to plan on leaving earlier so we can get to the church by 8:30 instead of 9.  "So we have to tell ourselves we need to leave the house at 7:45am?  That is so WEIRD!  No one does that."

Tim said, "It's ok.  Just remember, we can be weird, because as far as everyone knows, we're a nice, normal family." 

I laughed.  I love him.

Thanks, Laura.

Ilse's 7DHC

A while back I requested Ilse's metabolic geneticist to get a level on her 7-dehydrocholesterol, which is the precursor to cholesterol. Our SLOS kiddos have an elevated level of the 7DHC since they are lacking the enzyme to convert some or most of the precursor to cholesterol. Ilse's level was 167 two weeks after birth, *324 last year, and now.... it has gone dramatically down to 137 mg/liter! After some initial confusion regarding the units of measure, we determined (thanks, google) that it really is down! Her cholesterol level is up (101... normal! yay!) and her 7DHC is down. That is exactly what should happen with cholesterol supplementation, a good diet, and lots of hugs and kisses. :)

Yay, Ilse!

*The 324 last year had me very worried. Going up so much is not good, especially because there is some thought that this substance is toxic. I'm very thankful it came back down!

Appointment Bonanza

Today was a doozy of a day.  Tim was at Joey's appointment all day with him; and Chris, Ilse, and I went to Ilse's allergist.  The allergist appointment was a good one; I caught the doctor up on everything that has been going on-- apparently we hadn't seen him since Dec. of 2012.  I didn't tell him that had been intentional.  I really was pleasantly surprised by this appointment; my concerns were addressed extremely well, and I think the doctor went above and beyond with allergies he wants to test Ilse for.  He also listened to me when I gently steered him away from skin testing, and I think I even succeeded in making him think it was his idea not to do it.  :)  He said it is rare to be allergic to beef, but when he heard what had happened with the hives and the progression of the symptoms from barfing/snot to hives/barfing/snot, he agreed we had to test for it.  He is also testing her for egg yolk and something called ovomucoid, which he said is the blood test that will tell us if Ilse will also be allergic to cooked egg, which would be things like cake.  He asked me if we were staying away from eggs completely, to which I asked him if eggs were in bread, because I give her bread, and he said they are.  However, I got home and there aren't any eggs in the bread we currently have, so I honestly don't know if she has had any eggs since I decided to take her off of them back in Dec. 2011. 

We're also testing her for a lot of airborne allergies/dust/dander, etc., all the normal nuts, and also all her immune testing again.  I hope her IgG levels have continued to rise.  I would be very happy to be able to stop giving her her daily Bactrim.  I have been thankful for that drug every day but if I could stop giving it that would be nice, for Ilse and for me.  No doubt though, I'd wonder every day what I'd forgotten.  :)

After Ilse's appointment, Chris and I stopped at Chick-fil-a to eat lunch, and then we meandered our way to get Ilse's blood drawn.  I say 'meandered' because I felt like I was in that Harry Potter scene where the stairways keep moving.  I could swear the roads where moving today and not taking me where I needed to go.  Maybe I was just tired or completely out of it, but my ipad directions weren't helping me.  We eventually made it to one LabCorp, only to realize before walking in that I had locked my purse, keys, and cell phone in the car.  Fail.  Thank the Lord I had my Bluetooth on my ear, so if I stood real close to the car door, I could redial the last number, which again, thankfully, was Tim.  He called our insurance company's road side assistance.  Chris and I stood around the car for awhile because I was loathe to leave my purse there unsupervised.  Chris pretended that he was climbing to the top of the building to see if there were weeds up there.  He kept having to get longer and longer ladders and then finally bigger and bigger trampolines just to get up there.  Then, of course, he was stuck and we had to call 911 to get him down.  They made him jump into a big bucket of water, and then crazy boy, he did it all again.  The second time he managed to climb down, though.  He also was a painter, and he painted the car all the different things that I, the customer, demanded.  That pretending is one of my all time favorite memories of Chris.  We finally decided to run up to the third floor to see if we could get Ilse's blood drawn before the locksmith came, only to be told by the lab tech that not only did Ilse not have a good enough vein, but that he didn't think he could do it anyway.  :( 

We rushed back downstairs, but couldn't get ahold of Tim to know when the locksmith was coming, so we risked missing him to run inside again to go to the potty.  Phew!  That was one necessary trip.  We made it back outside just in time to flag the locksmith down.  He'd been lost.  :)  After signing his papers, we drove off and then it occurred to me to check for Ilse's lab orders and they were missing!  I'm so glad I thought to check.  We drove back through the parking lot and found them on the ground close to where we had parked.  Apparently they had blown off the stroller when I had put it away.

We eventually found another LabCorp, and they managed to get Ilse's blood with one stick.  I was so shocked, Ilse didn't whimper at all, even when the lady was fishing in her skin for a vein, whereas when the tech at the first location put the rubber band on her just to look for a vein, she flipped out.  Of course, he didn't take care not to pinch her skin. 

Tim was finished with Joey's appt. as soon as I arrived at the second LabCorp, but he was happy nicely waiting until we were done.  I went to West Plano again (about the third time for the day) and picked them up.  When Tim got in the car, he remarked on the time, and I couldn't believe it... the clock in the car was two hours off.  I had no idea when that happened and I felt bad that Ilse was an hour late for her second lunch.  :(  Consequently, I am still not done feeding her for the night.  More on that later.

Joey went wild when we got home.  I didn't blame him (although I did send him outside.)  Sitting in a hospital for six hours is too much for an energetic boy, but he did very very well I'm told.  Poor kid starved all day, so I fed him two meals when he got home to make up for it.  We're waiting for the results of that test.  I honestly don't know what to think; Tim got mixed messages from the radiologist.  Sometimes he would say the barium was moving very slowly; other times he'd say it was nearly normal.  So I don't know.

We got the babies in bed; my kitchen is a disaster.  But, we all have clean laundry to wear and after therapy tomorrow we get to go to another incredibly important appointment-- Chris' ENT appt.  I am quite eager to get this ear tube surgery scheduled.  My poor baby doesn't complain (wish he did, then at least I might know he had an ear ache before the dumb thing bursts) and so he is a joy to have around no matter what he feels like.

We're all over the strep, if Tim and I really had it.  Ilse is having bad seasonal allergies, but I am refusing to give her Claritin.  I just can't handle it.  I plan to give her some Benadryl here in a bit when I feed her again.

About Ilse's food: since she is just shy of 23 pounds and is now eating 180mls of blend every three hours, I somehow unconsciously decided that I needed to start feeding her more.  So, now she's getting more food per day, and in order to get it back to the nice five meals we were at with the eventual goal of three meals and two snacks, I'm going to have to up her per meal volume.  It can wait until after she is better, though.  I'm still concerned I'm not giving her enough calories, but no one has told me that, so I guess I shouldn't worry about it too much. 

I did reschedule her GI appt., because it was just going to be too much to do today, what with the car lock out and everything.  That dr is going to tell me I am feeding her too much.  :)

Thanks for bearing with this long update, if you made it this far!

Here's a picture from when Ilse fell asleep on me after a day of wild Claritin speed baby antics.  Precious, precious memory.  She hasn't slept on me in such a long, long time.  I remind her occasionally of how she used to sleep on me, but up until now she hasn't cared to do it again.  I'll treasure this memory forever.  I missed out on a lot of the cuddling new moms get to have with their babies.  I was either pumping or Ilse was barfing... so this really means a lot to me.