Home

Needed to write an update to let you know that we are all home...and very happy to be here.

Very busy, and it may take a while to regroup, but for now, John and I have polished off a bottle of wine, and are off to bed...together.

The girlies are sleeping snug in their beds. I can't say that we are completely out of the woods yet. We will be heading to the pediatrician tomorrow, and the pulmonologist in a week. I don't think they are quite ready to go back to school yet. But, we are home for now.

And happy to be here.

Staying Put

Well, we're still here... Holland is definitely feeling better, and was up and around playing and having a good time without oxygen or an IV all day yesterday. We thought for sure we'd be heading home this morning. Unfortunately, last night didn't go quite like we'd planned. As she was falling asleep her oxygen saturation kept falling to 87-89. She needs to be able to stay above 90 while sleeping in order to go home. We ended up putting the oxygen cannula back on. We tried weaning it down throughout the night, but any time we went less than a half liter she started desatting again.

It's especially discouraging when we get our hopes up.


Eden is in good spirits and feeling better too, though not quite back to normal yet either. I took her to the pediatrician yesterday, and we ended up starting some steroids with her as well. Her lungs are still sounding tight and crackly, but she is still oxygenating well, still eating, and still happy. I think she'll be okay.

Crappy Lungs

Sunday afternoon (Holland's looking good!):

Sunday evening (Eden was really sick here, but you wouldn't know it):

Monday included a trip to the pediatrician's office, mostly for Eden. I decided to have Holland seen too, at the last minute, because she had just started coughing early that morning. Eden had diffuse crackling throughout her lungs. "Sounds more like bronchitis than pneumonia because there is no focal point." Holland had some mild wheezing and a few crackles, but they cleared right up with a breathing treatment. Both girls were satting above 96 and were in pretty good spirits. We left with instructions to continue albuterol treatments every four hours with Eden, and every 4-6 hours with Holland, as well as a prescription for oral steroids for Eden if she wasn't sounding better by that evening. We never ended up giving E the steroids because she seemed to be doing pretty well by bedtime.

Tuesday morning (simultaneous breathing treatments, always so pitiful):

Both girls got treatments every 4 hours Monday night (John gave the 1am treatment, and I gave the 5am treatment), then they had another treatment around 9:30am on Tuesday morning. After that, Eden seemed to be doing pretty well and we started spacing out the time between her treatments. On the other hand, Holland started deteriorating and was needing treatments every 2 hours throughout the day.

I finally bit the bullet, and after dinner I packed our bags preparing for a stay and we headed out to the ER. She was satting 89 when we got here, and we predictably ended up admitted. Things got worse as the night progressed and she is now at 3 liters of oxygen, still only satting 93-94 when awake, and 89-92 when asleep.

Tuesday night (in the ER):

The ER pedi was calling it pneumonia, but we've had two more opinions since then. They say that every chest xray shows some areas of collapse in her lungs when she is sick. Even her one healthy xray isn't completely normal. The hazy parts of the xray (where there is some collapse) could be a breeding ground for bacteria, so they are treating with antibiotics to be "safe."

She has not had a fever, so they are not suspecting flu, RSV, or Strep (which a few people in my family have right now). She just has a virus. You know, the common cold.

And crappy, crappy lungs.

Wednesday morning (already asking "Can I go home yet?":

Four-Eyed Family

We picked up Eden's new glasses on Friday. I personally think she looks *stunning* in them.

We've been having a lazy weekend at home because both girls are now sick (especially Eden) with stuffy noses and coughs. We had to miss our nephews Malachi and Justin's birthday parties and we had to start up the breathing treatments yesterday. I'm really hoping that they are better enough tomorrow to make it to school and NOT to the doctor. Get better quick girlies!

I'm pretty sure it's not H1N1 because they don't have fevers, but I am exceptionally anxious (maybe even irrationally so) about catching it and have been really stressing myself out over it. The girls had their seasonal flu shots on Friday (before we knew they were sick), and I've asked a couple of docs whether we should pursue the H1N1 shot when it's available. They are definitely recommending it, so we will most likely get it around the end of October.

Eyes, Eyes, Eyes

I've been meaning to do an update about Holland's eyes. Probably a good thing I waited, because now I need to update on Eden's eyes as well!

Less than a month after Holland's last eye muscle surgery we started noticing that her left eye seemed like it was turning out instead of in. After totally obsessing and over-analyzing it for a couple of days I called her opthamologist office and asked what we should do. She told me to start patching her again for two hours a day and to bring her in for an earlier appointment two days later.

I kind of freaked out a little after that appointment, because not only did the doc confirm that the left eye was turning out, but also that Holland was not using her left eye well, and definitely not seeing as well with both eyes. We went from her "reading" the pictures on the chart at about 20/40 down to 20/70, maybe less.

The doc did think that Holland was able to pull the eye in, and feels that we should be able to correct the problem with a new prescription and more patching, rather than needing another surgery. So, that's what we're doing...again. For those that know about such things (and for my own future reference), her prescription is now at -3.75 sph +1.75 clyl. 100 axis in her right eye, and -10.00 sph +1.75 clyl. 076 axis in her left eye. The first negative number is the degree of nearsightedness and the next two numbers have to do with astigmatism. That -10.00 kinda hurt. Even though I knew it was coming, I wasn't looking forward double digits.

Also not so happy about more patching. I was so hopeful that after the surgery we would be done with that forever.

On the bright side... We had an appointment this week and she is back to 20/40 on the chart and is using both eyes equally well again. I am still noticing the turn-out with her left eye, but she was able to track pretty well with it for the doctor. We're going to continue patching for a month and see where things are then.

Eden had an eye doctor appointment this week as well. It was her first appointment in a year, and we had a good idea going into it that she would probably need glasses this year. She goes to all of Holland's appointments with us, so she knows the drill and was really looking forward to picking out her own frames. She did an excellent job "reading" the chart for the first time and she was proud of herself. Her first prescription is -2.00 sph in the right eye, and -2.25 sph in the left eye. We had a pair of purple frames with pink temple bars picked out from previous visits (I really loved them), but Eden saw a new all-pink pair when we got there, and quickly had her heart set on them.

They should be ready in about a week, but until then, here is a preview of her wearing Holland's old pink frames.

I know that she looks super-cute, and in the grand scheme of things it's not a big deal at all, but I still kinda wish that we didn't have something else to worry about keeping on her head, in one piece, unbroken and functioning properly.

And just to make the whole eye issue a little more complicated...our wonderful eye doctor, who has seen the girls since they were in the NICU and whose opinion I really value and trust, is retiring in November. Boooo. This really bums me out. It's so hard to find good doctors who take adequate time to get to know you, value your input as parents, and are really, really sharp at what they do. We are really sad to lose another one of the best.

But, not to end on a bad note. I am so grateful that both of my girls can see, hear, talk, smile, laugh, love, and learn. They continue to amaze me everyday.

5-Year Photos

All Good Things Must End

Our summer has come to an end. As usual, I didn't accomplish many of the things that I had set out to do this year. I didn't get rid of our broken hot tub. I didn't get my new counter tops. I didn't get the ceiling painted in the family room. I didn't hire someone to help clean my house.

But I did accomplish some major things. Holland had her eye surgery (questioning now if that was a good decision...more on that later). Three appointments later, and Eden has a new pair of pink DAFO's with rainbow straps. Eden's new pink Rifton Gait Trainer was delivered and we started practicing with it. I got Holland enrolled in Hippotherapy and she got to do six sessions with Eden this summer. The girls went to a week of day camp at the Center of Exceptional Families. John and I took a trip alone to Traverse City for our anniversary (11 years!). We went camping! I helped my siblings and parents out and hosted a massive garage sale at my house (together we made over a thousand dollars!). Eden gained THREE pounds in three months!

Best of all, I really, really enjoyed spending time with my girls. It was our best summer together so far. The hard things were a little easier, I had my routine down a little better, and it wasn't quite so hard to manage all of the appointments with both girls on my own. Holland and Eden are getting so much better at playing nicely together and entertaining themselves for longer periods of time, so it was a little easier to shower and get things done around the house. We talked a lot, played a lot, stayed remarkably healthy, and had generally a really great time together.

I'm not looking forward to going back to work tomorrow. But I'm sure I'll be okay...once I can get back into the swing of things.

Camping

My family camped a lot when we were kids, and some of my best childhood memories are from our camping trips to Ludington State Park. John and I camped quite a bit before we had kids as well, and we always enjoyed it. I know it's not for everyone, but it's for me. I just love the laid back feeling of it all. I love the smell of the outdoors, campfires, tents and sleeping bags. I love eating meals cooked over the fire or cooked in a single skillet on the little propane stove. I love s'mores, dough boys, and pies cooked over the fire. I love going a few days without a shower and not worrying about who cares! I even love brushing my teeth out of a plastic water jug and squatting in the brush to pee. Love it!

Holland and Eden mentioned that they wanted to go camping for their 5th birthday not long after our big trip to Disney World last year. It was an idea that stuck in my head. After a year with Eden's power wheelchair, I just knew that it was time! The wheelchair didn't necessarily make this trip possible, but it certainly made it more fun and a hecka lot more convenient. She was able to get around on her own, and spent a lot of time rolling around the campground with Holland on her bike. I love the joy and independence that the powerchair gives Eden and wouldn't want to imagine life without it at this point. She is an amazing driver and people stop us to comment on how awesome she is:)

(As an aside, I should mention that Eden's chair got a makeover for her 5th birthday. We took off the old, worn out princess stickers, and put on some new Hannah Montana ones. She is so proud.)

So we loaded up our gear...our new two room cabin tent, power chair, fishing poles, and all, and headed out for our first camping trip. We didn't venture too far from home (a 30 minute drive, just in case). But we got to do everything on our agenda. We went to the beach, rented a canoe, fished, and biked. Our trip was going to be 4 days, 3 nights, but we actually extended it an extra night since we had such nice weather and were having so much fun!

The girls loooooved it. Just when we finished setting up our tent Holland said to me, "mom, thank you sooo much for bringing us here!" At the end of the trip the consensus was that we ALL love camping and will definitely do it again at least once every summer!