Wednesday, December 17, 2008

LPA Pictures Cnt'd

Here are the group photos from our LPA chapter. We are going to be having another gathering sometime inFebruary (hope we can make it to that one! maybe Trent too!!!) Also, we're waiting for approval to start the "Sunflower" Chapter here in Wichita. Let's hope it goes through!!!




Tuesday, December 16, 2008

Oh Christmas Tree!!!

So, this past weekend we went over to my mom's house to help her set up her Christmas tree! The bottom 4th was full of ornament balls, I wonder why?!?!?
you can't see me Santa!!!!


Oh, I also got an early gift from Santa! My new stroller! Yes, it is a doubles stroller, and no, we are not expecting....but, we will need it soon enough though (we hope when he gets back!) The piece on the back comes off, and it can also attach to the front if a baby needs to lay down. It's a Phil and Teds Jogger Stroller with Doubles kit and I have been wanting it FOREVER!!!! No better time to get it than for Christmas right? But because of this weather I have not been able to use it :o( And for some reason, only Mommies seem to be as stoked about a new stroller like me!!! So I figured I would share my joy!


Monday, December 15, 2008

Straight Hair

So, one night I got a little bored and decided to Straighten all those curls on Lilah's head! Take a look see, doesn't even look like her!!! Oh, and there is a before picture from earlier that day:


Don't mind the finger up the nose!!! LOL








Thursday, December 4, 2008

Pictures

Here are the pictures I promised:

Lilah trying on daddy's hat before he left:
Mary,Lilah (not to interested in taking a photo) and myself at the LPA gathering:

Katie, lilah and I at the LPA gathering


Tuesday, December 2, 2008

I should really

keep up with this whole posting thing!

Since the last postings, quite a bit has happened!

We went to a small LPA get together here in Wichita, KS! It was our first meeting with other LP, and I was soooo excited for Lilah! We had met a family through therapy, and she was putting together another LP get together, since the one she had last year was such a succes! At the meeting, we discussed getting a chapter started here in Wichita, KS, since the closest one to here is in Kansas City, over 3 hours away; or Oklahoma City, the same distance.

We were able to get enough votes in, so now all we have to do is get the details worked out and send in our information to get started as a region! Also, I think we are going to get Lilah and the family officially registered with LPA since she is getting older and more aware of people and her surroundings. So hopefully, some year, we will be able to make it to a national conference! YEAH!

I have some photos, but they are still on the card, but as soon as I upload them on the computer, I will get them posted on here or on facebook!

On another note, we had our follow up appointment in Austin about two weeks ago. What a headache it was to get the tickets! We missed our first flight out at 1030, and had to stay at the airport until almost 3 that day to catch the next flight out to Dallas. We arrived in Austin around 6 that night and were able to get a room at the Ronald McDonald house. Man I love that place!

The people there remembered me, and I felt like I was still at home! They are always so welcoming there, and there was still food there when we arrived for dinner, and I was glad cause I was soooooo hungry, with no car! We ate, and then got ready for our big day!

The following day, that Tuesday, she had her MRI and C-flow follow up at Dell Childrens hospital, which was scheduled for 11 that afternoon. She hadn't had anything to eat or drink since the night before around 6, so by the time they checked us in, she was very hungry. They were running behind that morning and did not get us back to the MRI room until almost 1230!!! Can you imagine having a 22 month old, who hadn't eaten since 6 p.m. the previous day?!?!? Luckily she tires out when we travel, and was ready for a nap, so we both fell asleep for an hour or so, and waited for them to get us..at one point I thought they may have forgotten us!

They let me walk her to the room and they put her to sleep and I went off to have lunch. By the time I got back from lunch and purrusing the hospital for a bit, she was finished! For some reason, she wakes up angery, very angery from the anesthsia! So they had to give her a slight sedetive to calm her down while the anesthesia wore off...and it worked!

From there, we headed to her appointment with Dr.Aronin, already over an hour and a half late for that! I'm glad she is a very understanding doctor, and still saw us, although she was very busy that day! (And I never flrt rushed while seeing her, like I do with some doctors!) She had looked at the images (since she is so close to the hospital and works with them, they are able to immediately send the digital images to her) before we got there, and had great news!

Dr. Aronin said that the improvements were great and that the flow of her spinal fluid was moving the way it should because the space there was more than it had been before surgery! She was very impressed with the way she has recovered. With that, she refrerred us to a doctor closer to home, one at Children's Mercy Hospital in Kansas City. Which is waaaay closer than Austin!

I think I am going to get her in to a sleep study to make sure she is doing alright. Some nights she seems to breathe differently than others and more recently Lilah has been waking up in screaming fits. Not like a tantrum, but a nightmare type fit, where she won't go back to sleep unless she is in bed with me. I dont mind having her in bed with me, especially now that Trent is gone. But I would like to have her get over these horrible night fits that she is having because she seems so scared afterwards and I don't like to see her that way.

On another note, she is coming down with an ear infection (darn cold weather!!) Doesn't matter how much you bundle them up, they still manage to get something! But I bundle her up, just to get her to the car and pull off the coat before I put her in her seat before we leave; because like most of you know, they are their own little heaters and she sweats a lot! As the car is warming, and before I pull off, I have to take her hat off or else it will be dripping wet by the time I get to our destination! And a wet hat does no good in the cold!

Oh, we spent Thanksgiving in Illinois with Trent's family. It was pretty laid back there and his family was very helpful with her. They would get her when she woke at 6 in the morning! and watch her till I woke up, about 10, what a great relief to sleep in!!! I visited family, and met more extended family; went shopping and was just able to relax more! They will be coming down here for Lilah's birthday party in January.... boy are they in for some fun! lol

Other things are that we are now on the downhill slide to Trent's deployment being over! Whoot-whoot!!! Just a few more months, hopefully and he will be home! He says he is bored, with nothing to do but work out, sleep, eat and work! Sounds like all he does when he is home! lol But I am still able to talk to him almost everyday, and some days he can borrow a webcam from the base computer room and Lilah and I can say goodnight/good morning to him! She really likes to say hi to daddy that way, instead of over the phone.

Well, I think that is it for now. We don't have much planned for the next couple of weeks before Christmas, but if we do, I know I will have to update sooner than this! Oh, and I celebrated my 23rd Birthday a few weeks ago...yeah..I guess!!! lol

Friday, November 7, 2008

wow

yea, so I realize that I am one of the last one's to post anything from halloween or for a while actually! things are really starting to take a toll on me, watching her, doing class work, trying to find a good sleep schedule for myself! I seem to have the worst sleeping hours ever!!! But other than that, things seem to be going well.

We were approved for another 6 months for lilah's nuerosurgeon in Austin. (Since we are in a different insurance coverage area, they had to pull some strings in order for us to keep her for that long!) So we are going to fly down to Austin for Lilah's checkup with Dr.Aronin the 17th -19th of November. Hopefully things will still seem to be ok with her and that her surgery is really working for her.

So, here are some recent pics that we took, some are from before halloween, then on halloween. Oh, and some other news, Trent is doing really well where he is. His hours are kinda funky, but we still get to talk to him everyday for now. I will post a couple pics on here also.

Saturday, October 25, 2008

I have been tag'd!!!

I have been tagged by Kim and MIKE!!!!!

Here goes:10 Years Ago I

1) In the 7th grade
2) Had a crush on some boys
3) Going to skating parties
4) Wearing a uniform everyday
5) still didn't drive

Things on tomorrow's to-do list

1) pick up lilah from my mom's
2) go to church
3)find a pumpkin patch to go to
4) Call Trent
5) finish some class work stuff-boring!!!

Things I would do if I were a millionaire

1) Pay back my parents for any 'borrowed' money
2) pay off my own little debt
3) make sure Lilah (and the rest of my future children) have the best care possible
4) make my parents retire early
5) Help out all my family and friends.

5 Places I have lived

1) Wichita, KS
2) Bitburg, Germany
3) San Antonio, TX
4) Uhm, a house
5) an apartemnt (ok, so the last two don't count, but I don't have any more places!!!)

5 jobs I have had

1) Janitor
2) Hostess
3) Concession stand clerk
4) Baby Sitter
5)Quik Trip Clerk

hmmm..so it seems alot of my blog friends have already been tagged...but if you haven't..fill this out!!!!

Friday, October 10, 2008

BUSY!

WOW!!! This past week or so has been very very crazy for us! Where shall I start? While Lilah was still in the hospital last Monday, trent was called off leave because they had his deployment orders ready, so he had to return to work that Tuesday to finish out processing and get finalize his leave. So, instead of having a nice relaxing week at home w/Lilah and I after she got out of surgery, Trent was rushing around trying to finalize everything and get things ready. My mom had to leaave on Thursday, and after that, it was just us three.
Then, that weekend Trent left. Which I really didn't like because we didn't get much 'our time' before he left. We were to busy trying to make sure Lilah was ok, or that he had all his info ready to leave, things packed, etc. After he left, we spent about a day getting ready for the movers to come and pack up the house.
I was not ready for that at all! Luckily one of our friends (thank you Cin!!!) was able to take off Monday and help me with the packers and Lilah. Big help! The movers were nice, worked with me well, and didn't break anything this time!!! I think the fact that I made them cookies and lunch helped with that also!
After that was all done, I had to get together the stuff Lilah and I would need to take home with us. I did not realize how much that would actually be until my dad came and got boxes for it all! We ended up renting a UHaul and pulling the stuff back to Kansas with us. The drive took about 11.5 hours total, not to bad in time.
Lilah and I are finally home in Wichita, KS. We will be here until Trent gets back, maybe 6 months or so. During that time, I will be going to school, working, being around family once again. Looking forward to some great times here!

Thursday, October 2, 2008

Home...

So0, we all made it home Tuesday evening. The drive was pretty good. Lilah only woke once in one terrified fit, but we were able to calm her long enough to get home. She has been sleeping alot lately and still taking her fluids and some food. But we figure she will be like this for a little bit more to come... With that in mind, I am not sure we are going to go to the LPA District 8 Regional in Corpus Christi next weekend. I think we are going to be leaving San Antonio that weekend to head back to Wichita, KS.
Oh, on another side note, Trent was recalled from leave this past week because he is leaving this weekend. No fun on that... so, Lilah and I will be going back to Wichita to be closer to family. (Although we will miss our extended family here!!!) I feel this will be better for us because this is the first time we will be without Trent for a long period of time, and since Lilah is not in school and I am not working, it will be nice to see and be around family for the holidays and all the other big events.
In the mean time, please continue to pray for Lilah and for a safe trip for Trent.
I will try to get some photos loaded in the next week or so of our hospital stay and our brave little girl!

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

YEAH LILAH!!!

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?!























video

video

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!
video

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