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!!!
I am here to share in the life of our family, especially my joy, Lilah. She was born with Achondroplasia, a form of dwarfism. I would like to share my support, ups, and downs, accomplishments and short comings about our family and taking care of Lilah. It's not that I would die for her, but that I live each day for her.
Wednesday, December 17, 2008
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!
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
Thursday, December 4, 2008
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
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
Subscribe to:
Posts (Atom)