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Isabelle finally slept all night last night until 6:15am. Yay!!! Medically speaking I do not have any news or updates. However, I do have some really great pictures and a video for your viewing pleasure!








Also, because I have decided to eventually turn these blogs into a book for Isabelle when she is older I would love for her to know who all was reading her story and praying for her. A few of you have left comments but many who visit have remained anonymous. I have been getting hits from all over the United States and even a few in the UK. Please feel free to leave a comment on this post and let us know who you are. We would LOVE to know!

Sooner Rather Than Later

We just got back from Isabelle's check up a little while ago and here is the long and short of it:

The good news: The part of the spine that was fused (C2-C6) looks good. It is still lined up like it's supposed to be and none of the screws or plates have slipped. Her pin sites still look good and are still infection free so far. We do not have to go back for another check up for four weeks.

The bad news: C1 and the base of Isabelle's skull are still not lined up like they need to be. We knew this before Isabelle left the hospital so this is not new to us. However, before we left Isabelle's surgeon made some adjustments to her halo in hopes that this would help the alignment. Obviously it didn't. It is likely he will have to go back in and fuse all the way to the base of the skull sooner rather than later. Again, we knew this before leaving the hospital but we were still hopeful that the adjustments he made would help out a little. The plan is to continue along as is and see what happens once the halo comes off. He obviously wants to wait as long as possible both for growth and recovery from the first surgery. Unfortunately this is one of those things where there is no way to know when it will have to be done. Sooner rather than later can mean two months or two years as opposed to ten or more.

So, to answer the question of whether or not the fusion worked. Yes and no. The worst part of Isabelle's spine that was causing the most danger has been fixed as long as the fusion continues to hold. However, because Isabelle has a syndrome that causes spinal instability it is hard to get every thing perfect.

Please continue to pray for Isabelle and the alignment of her spine. That she will remain out of danger from spinal cord damage and her spine holds up for a few more years (or more) so she can grow.

Check Up Tomorrow- Please Pray

I hope this post finds everyone well. I apologize for not having many updates about Isabelle the past few days but frankly I have not had a whole lot to write about. I guess no news is good news though! I have also been hoping that the lack of Belli updates would help you guys concentrate on sweet baby Stellan and his family who is in much more need of prayers right now than my sweet Isabelle who is doing VERY well as of now.

She still has not gone poopie...yikes! Don't worry too much though. For those of you who don't know Isabelle that well this is actually kinda of normal for her which is why she takes Miralax every day. But still, since she is already uncomfortable in the halo not pooping doesn't make it any better.

Aside from that she has been in a great mood. I finally let her venture off of her blue mat that I make her sit on in case she falls and she has been a new person ever since. It is extremely stressful for me because I worry about her falling over. But hey, at least she is happy. Her pin sites are starting to look much better too. The one in the back has not had any drainage in the past few days and the one in the front is looking better every day.

We have an appointment with Isabelle's surgeon tomorrow for x-rays and a progression check up. I have been increasingly nervous about this check up through out the day. Please keep us in your prayers tonight and tomorrow. As I have said before there is always the chance that the fusion will not work and her surgeon will have to go back and do it again. And of course the same risks from the last surgery will apply to another surgery as well.

Please pray that we get a GREAT report from her doctor tomorrow and that every thing looks good with regards to her spine. Also, for her pin sites to stay uninfected and she remain healthy through out this journey. Please also continue to keep Stellan in your thoughts and prayer as well. Don't forget, you can click on the icon to the right that says, "Praying for Stellan," to read his story and get updates on him. I will update tomorrow after the appointment as soon as I can.

Picture Post

Isabelle is still doing pretty well. She did get sick yesterday while I was at work but I am pretty sure it was caused by her reflux and possibly lack of pooping. Thankfully my mom sacrificed her hand to catch the throw up so she got a minimal amount on her vest. Thanks mom! The two pin sites that have been causing some problems are still draining slightly but they have not gotten worse. I put a small amount of Neosporin on the one in the front and it actually looks a little better. I tried putting it on the back one too but it is difficult to get to with Isabelle's hair in the way.

As far as sleeping goes she took a one hour nap yesterday and slept from 7:30 last night until 6:30 this morning. She woke up once around 4:30 but quickly fell back to sleep after I made some adjustments to the wedge she is sleeping on. So all in all a pretty good night.

Prayers for the day...for Isabelle to eat more, have a bowel movement, and for her pin sites to heal. Those, along with the major issues of the fusion working and her spine continuing to stay straight.

White Is Okay, Yellow and Green Are Not

Sorry for the lack of updates! My internet was down all day yesterday so I wasn't able to get online. I hope I haven't disappointed my readers too badly =-)

We have had a very busy past two days. Thursday I finally felt Isabelle was well enough and comfortable enough with sitting to let her go outside. She sat in her wagon and I pulled her around the backyard. We also blew bubbles and pulled leaves off the bushes. Eleven to be exact. I'm not sure why but that is how many leaves Isabelle wanted. She had a great time and sat very well in her wagon. The only downsides were that she now constantly asks to go outside and going outside makes her smell so I don't like to do it too often.

Friday was an even busier day. We had to take a trip to the ER because one of Isabelle's pin sites had some discharge. Apparently the neurosurgery department doesn't have clinic on Fridays so they told us to go to the ER instead. We waited. And waited. And waited some more. And finally after about two hours one of the neurosurgery residents came in to look at her and said everything was fine. Which was great...but a waste of my time. He said that white discharge (which is what Isabelle had) was ok as long as it didn't smell and she wasn't having any fever or other symptoms of infection. He said to just call if anything gets worse or if it starts to have yellow or green discharge which apparently is NOT ok. Personally I don't think the white discharge is "ok" but hey I'm not the doctor. Another one of the pin sites also looked very red and irritated but did not have anything coming out of it. He said that one was fine too and that redness didn't always mean infection. So he sent us home and upon waking up this morning that very same pin site that was "ok" is now leaking too. Great! And on a weekend when the ER is jam packed. I think I will just watch it and see what happens before I put myself through that.

Isabelle also did not sleep last night. I'm not sure exactly what the problem was except that she just wanted to watch an Elmo movie. I finally picked her up after about and hour and she immediately perked up. So then I knew she wasn't feeling bad...just wanted to play. I sat down in the glider with her and she fell asleep almost immediately. I laid her back down and she of course immediately started screaming. I stayed strong though and left her there. She eventually fell asleep after an hour or so. So, we are both exhausted and I have to work today. But I will try not to complain to much. I would much rather have her here waking up all night than not here to wake up at all.

Check back tomorrow. I am going to try and post some new pictures.

All Done Sleep

After Isabelle laid in bed calling for mommy for an hour last night she finally went to sleep at about midnight. Then was up again at 12:15 saying "all done sleep, all done." This cycle continued all night. Most of you who read this blog probably are not around Isabelle and me enough to really know my parenting beliefs so I will tell you that I am a big believer in if you just let them cry they will go to sleep and if you go get them every time they cry they will keep doing it and never go to sleep. My rule since Isabelle was born was that if she woke up crying I would go check on her once to make sure she was ok and then leave. If she was not sick or had any visible signs of injury I would just leave her in her room and let her fall asleep. I continued this pattern until Isabelle was two months old when she started sleeping through the night and to this day she rarely wakes up at night unless she is sick or hurting.

So, last night I found myself torn on what to do when she kept waking up. My heart was saying, "Aww that poor baby. She has got to be so uncomfortable and those pins in her head have got to hurt." But my head was saying, "She is FOOLING YOU! She has slept through the night for the past five days. Those pins do not hurt and as soon as you pick her up she quits crying and wants to play. Yep, she's got you fooled."

So, from about 12:45am until 6:30am Isabelle slept on and off but I did not get up to get her. How did that work out for me you ask? Wonderfully so far! She took a 2 and 1/2 hour nap this afternoon and has been sleeping soundly for the past two hours. I will let you guys know how the rest of the night goes.

I also wanted to give you guys a few funny snippets from the past couple of days:
When asked, "What do you say?" after Isabelle burped, instead of responding with "excuse me" as she normally does she said, "Crap!" I have no idea where she got that from.

When asked why she was scratching her hiney she responded with, "See poo poo?" Um, no thanks.

While watching Sesame Street Isabelle was asked what Big Bird was doing. She responded with, "Big Bird crapping." I'm pretty sure she meant to say, "Big Bird clapping." I hope...

Finally, after opening a diaper with a rather large poopie in it I said, "Holy Cow!" In which Isabelle responded with, "Holy Cat! Holy Sheep!" If you say so sweetheart.

Tuesday Run Down

Ate a good breakfast
Watched Elmo
Watched Elmo
Kept tilting to the left while watching Elmo
Ate one bite of grilled cheese for lunch
Took a nap
Had a snack
Watched Elmo
Sat up straight while watching Elmo
Watched more Elmo
Decided sitting was boring and started scooting around on butt
Had one bite of pizza for dinner
Had a visitor who brought some really great stuff from her and some other really GREAT people
Went to bed
Mom went to see Harry Potter
Mom came home to me awake and rocking in the chair with Mimi. Oops! Got caught!
Laid in bed and called for mommy for an hour
Gave up, it ain't gonna happen