Sunday, September 28, 2008

So we thought...

So we thought we were going to be able to take Lilah home yesterday, because she seemed to be doing a little better. But boy were we wrong! We were on the way home, about 20 minutes into the drive and she begins to get sick, and gets sick about 3 times in a 20 minute period! So we go straight back to the hospital, the ER, get her checked in and wait. They put us immediately at the front of the line since we were discharged less than 2 hours prior. Trent goes to the area where we just left, has them call Dr.Aronin, she calls the ER, tells them to send Lilah back to the same area and begin to monitor her.

So we have been back in the ICU, same room, same team since last night. We were able to get a room back at the Ronald McDonald House and have been here also. Since she has not been eating or drinking alot on her own, they put in another IV tonight, around 645, and began giving her fluids. She has begun to perk up a little bit, eating some solids on her own, drinking a bit more. But the doctor does not want to let her go until she is drinking atleast 800 mL on her own. So we are playing things by ear at this point.

Waiting to see how she does tomorrow with the IV and eating on her own. I think they are going to lower the dose intake on the IV so she can try to eat and drink on her own a bit more, then see how she does from there. We still need prayers, recovery is taking a bit longer than we would like. But the area where Dr.Aronin had to cut is looking great and healing quite well. So no worries in that area, just trying to get Lilah back to herself and fully eating and drinking again. With time, she will be better!

here are some pictures I was able to get today while outside with daddy:

Trying to throw money into the water, but we came up a few inche short!

Friday, September 26, 2008


Yea, Lilah made it out of surgery yesterday around 200p.m. They took her from us around 830 yesterday morning and kept us updated every hour, and they were not able to get started until almost 1030 am on Thursday. the doctors had a hard time getting the nerves in her left leg to work in the beginning, but were still able to monitor it all through the surgery and nothing changed, which is a good thing. After they finished up, we got to see her, and she was still pretty drugged up.
Dr.Aronin had to make about a 5 inch incision from part of her back which goes up to her head. It was so long b/c the area which she was operating was very tight and Dr.Aronin did have to take out a middle piece of her first vertebrae. All the rest went very well and Lilah has been recovering very well.
She is still in some pain, but it is minimal and limited to her not wanting to move her head or body much on her own. She has figured out that if she lays as still as possible, then it hurts less. Also, she is not hooked to anymore monitors, no IV's, just a little cap on her head to keep the bandages on. And for those w/LP children, she is sweating more than usual! So when we walk w/her, it looks funny because she has on a cap, holding her blankie in one hand and only a diaper on!
But hopefully we will be able to take her home by Sunday if she continues to eat well and not be in to much pain. Please continue to keep her in your thoughts and prayers because she still has a recovery period and process to go through!
Thank you all so much!!!

Wednesday, September 24, 2008

Made it to Austin

Ok, so we finally made it to Austin late tonight around 915. We had to stay at the Ramada Inn because they would not cancel our night, but we are going to be staying at the Ronald McDonald House the rest of the time we are here.
It still has not completely hit Trent or I about what is going to happen. We have been trying to block it all out for the past week or so, and it's finally catching up to us. Things have been so hectic thus far, and we are almost to the time when she has to go into surgery.
We worry about her waking up and not knowing why she is hurting, what are all the machines and the people around her. For me, it's not fair for her to have to go through all of this and I'm constantly asking for her pain so she does not have any. Yet I know that going through this will help make her stronger later. Yet it is still not fair for her (or all the other LP's out there) to have to go through all of this.
For now, this is all I have to say. I will keep everyone updated with how everything goes tomorrow and her recovery. It may take a day or so, but when we have time, we will update it.
Keep the prayers coming!!!

Thursday, September 18, 2008

Here are some photos that I found and saw of Lilah, enjoy them :o)

She found daddy's hat and decided to put it on.

Does this look like an angel face to you? Notice what is holding up the halo! lol

Don't I look so purty today?!

Appointment with Dr.Aronin

Yesterday we had our pre-op appointment with Lilah's nuerosurgeon, Dr. Patricia Aronin. She explained to us the type of procedure that Lilah will be having and what we should expect. Dr.Aronin will make an incinsion at the base of her skull and make the foreman magnum larger so the fluid can properly flow from her spine and into and out of the her brain.

She also showed us the images that she had done last week. With those images we saw how small the opening actually where her foremen magnum was. The opening should be about 10-11 mm in length, but Lilah's measured as low as 4.5 mm in some areas and as wide as 6 (being generous) in other areas, which is not good. The doctor believed that the episode she had a few months ago was caused by a pinch or pressure from her foreman. Which is also another characteristic of this condition, the small opening of the foreman magnum.

Dr.Aronin also said that Lilah should be in the hospital for a couple of days, so we will be in Austin for a while. Luckily my mom is coming down here to be with us during this. We also were able to get on the waiting list for the new Ronald McDonald House across from Dell Children's hospital. We are hopeful that the surgery will go well and were looking forward to Lilah getting better and back to her happy, busy self!

After her appointment, we decided to go eat at Steak and Shake since Trent hasn't been there in over a year! He missed it! We were able to get Lilah in the hats that they give out.

Saturday, September 13, 2008

These past and upcoming weeks

So, I am going to make this as less confusing as I possibly can. Where do we start? How about Wednesday, September 3. We had an appointment with Lilah's neurosurgeon, Dr. Aronin, in Austin, TX that day at 1330. While we were there, she told us that Lilah's head was growing faster than what she liked to see and that her head growth was starting to stray away from the average achon head size.
This was such a concern for her that she immediately scheduled Lilah for imaging testing done the following week, the 10th of September. So, on that day, she had MRI's, CTScan, MRV and Xrays done. Those took about two hours to get all those images done and she woke up just fine from that entire procedure.
The doctor recieved the images the following day, Thursday, and her receptionist give us a call today to say she had an appointment on Wednesday, the 17th. A few hours later, another receptionist called and told me that they had scheduled Lilah's surgery for the 25th of September. I know, did you miss read that? Nope, that is what happened. I recieved a call on Friday, the 12th saying, 'We have Lilah's surgery date scheduled for the 25th at 8 o'clock. Does that day work for you?" "Yes" "OK, just wanted to make sure, bye." Click and the conversation is over.
A million questions were running through my mind. What di dthe images show? What surgery is she having? Where are we going to stay? How is Lilah going to deal with all of this?
I immediately called Trent and told him how the conversation went and he had the same questions for me! I didn't have the answers and felt stupped for words. After hanging up the phone with him, I called the receptionist back and ask exactly what is she going to be having done and will the doctor tell us more about it before she has it. She said that Dr.Aronin will discuss in detail what is going to be happening at the appointment on the 17th. And that she will be having 'craniectomy for posterior fossa decompression.' Laymen's terms, I still do not know exactly, but they will be releaving the pressure on her brain, possibly due the excess fluid built upon it and possibly be doing surgery on her foraman magnum.
I will keep this updated as soon as we know more about what is going to be happening with everything. Please continue to keep Lilah in your thoughts and prayers and send her some strength because she will be needing some extra help!
more to come

Friday, September 12, 2008

Aboard the Ship!

So I finally decided to join the wagon-ship and start a family blog for the three of us. This should make it easier not only for me, but for family to keep up with daily, weekly and monthly happenings of our family. And I'm sure not everyone keeps all the eamils I have sent out and that makes it harder to keep up with all the new happenings. This will help us all check things out, reread and such.

Another plus is we are able to keep up with other families dealing with the same issues we are going through. Although I have not met some of the LP friends we have, I still talk about them and their experiences to help us cope and help my family and friends now more about what we are dealing with.

With all that said, welcome to our blog!

Trent, Sheri and Lilah