Big Girl Lilah

Lilah is now 11 months old, but it has been a couple months since I updated so in the meantime she has had her 9 month check-up, and her evaluation/check-up at the preemie clinic. Her visit with Dr. Landes, her pediatrician went smoothly, she is growing as she should, and is still on the charts. Around a year, Dr. Landes informed me, she will expect Lilah to stop playing "catch up" and just grow at a normal rate. Her head circumferemce is still growing, and although her head is a bit on the small side still, it's nothing to be concerned about. The doc was extremely impressed with Lilah, and admitted to me that when she first saw her, she would have never predicted that she would be doing this well. She has far exceeded their expectations. That's my girl!

A couple weeks later she had her appointment at the preemie clinic. Chevelle and Ethan had a dentist appt. at the same time as Lilah's, so because we have one vehicle, Josh brought them to the dentist, and I was dropped off with Lilah at the clinic. When I arrived at the clinic, I didn't have to wait long and was seated in an office and was told that Dr. Rock would come in and speak with me, but first the nurse weighed her and measured her height. DR. Rock came in and explained what they would be doing, and it basically consisted of a physical exam, a cognitive test, and a meeting and an exam with a physical therapist to see her progress in that area. I probably was talking to Dr. Rock for a good half an hour before any kind of exams began. She was trying to explain everything to me and get a background, ask questions, etc. She talked super fast so I was just trying to take everything in, but she is an amazing doctor and is very helpful. She asked me if there was any services I needed help with, social security, food stamps, fuel assistance whatever. She also wanted to let me know about great programs that are out there for kids with dissabilities like The Easter Seals, and the Cerebral Palsy Association (if she ever recieves that diagnosis). I could potentially use these services in the future, and they provide wonderful things for free such as horseback
riding lessons and swimming. She gave me many useful tools, that could have a positive impact on LIlah in the future. While I was grateful for all this, I was worried that everything was taking so long, because Lilah was already starting to get restless, and we hadn't even started the exams. Finally she said we would start the cognitive test with the psychologist and save the physical exam for the end. She did well during the testing as far as not crying and getting upset, but it was very hard to get her to do the things they wanted her to do. I think the fact that it was a room full of strangers and she has stranger anxiety contributed to that. Some of the tests she tackled just fine, like when they had her grab certain objects or reach for them. They stood behind her and called her name to see if she would respond to it. They had me hide from her view, then come back into her sight to see how she reacted. They had me play pattycake with her, and a few other games to see her interaction with me. The physical therpapist did some stretching with her and observed her on the floor for a little while, and then gave me some exercices that might be helpful to do with her, which most of the stuff she suggested we have already been doing. She also wanted to know what we have been doing with her in OT and PT. They were unable to give me any testing scores because their computer system was down, but they said I would be getting a full report in the mail (which I am still waiting on). The psychologist (I can't remember her name) did let me know that she will probably score low on the cognitive tests because so much of it is sight based, and we are not exactly sure what her limitations are as far as sight. Some of the sight tests included looking at certain pictures, although I'm not sure what they are expecting of her when she looks at the pics. That is why I am hoping for the report in the mail soon, and Amy said she would help me go over it in case I had any questions. I am supposed to bring her back when she is 18 months for a follow-up.

So new accomplishments: Lilah can completely roll over front to back and vice versa, this to me is a huge accomplishment, because we have been working so hard to help her meet this goal. It is also how she gets around, while other babies crawl and creep, this is her means of transportation lol She is tolerating being on her tummy and can reach and play with toys on her belly. She can also sit up now
completely unsupported for up to 10 minutes at a time. She can't get into the sitting position by herself, you have to place her there, but she
has the strength to sit there for extended periods of time. I can tell when she is getting tired of sitting there because she will start to extend
her head backwards, like she's trying to gently fall back. When this happens I usually lay her down and give her a break. Karen had me
purchase a couple toys that were more in her age range because she is starting to get frustrated and bored with the rattles and toys that are
more geared toward a 4-7 month old. Karen thinks that Lilah's cognitive skills far exceed her motor skills, so that is why we are seeing a little bit of frustration with her. She wants to move around and play with the more advanced toys, but she simply doesn't have the motor skills to
do so. Although we do see slight frustration, Karen is surprised we don't see more. She thinks Lilah is very intelligent, and she can't imagine
how frustrating it must be for her, not being able to move her body the way she wants to.

Last week I recieved a call from Dr. Wilsons office saying they wanted Lilah to have a routine cat scan to check up on things, make
sure her shunt was functioning properly. Of course they wanted her to go without eating after midnight in case we needed sedation. Although
the appointment was early in the morning she was still very cranky, irritated and hungry by the time they took us in to the MRI room. I
informed the radiologist that the last time we came they laid her down and allowed is to feed her the bottle while Josh talked to her and kept
her calm. He said since that seemed to work last time, we'll give it a try this time. They put the vest on Josh and I waited in the room with
the Radiologist, Josh fed her the bottle, but then she started coughing because she was laid down so flat. That caused her to flip out and
start screaming and trying to wiggle out of the contraption they had her strapped into. The radiologist went out and started moving the giant
bed back and forth, back and forth and sure enough the rocking motion put her to sleep. He came in and took the picture, which took a
minute or so and she was done. He said that works like a charm everytime ( :.

The month of February wasn't a great one for Lilah as far as her health was concerned. She had high fever on and off which led me to bring her to her docs positive she had an ear infection. Luckily she didn't. She also had a touch of the GI bug and had diarrhea and was throwing up for a couple days. She seems to be feeling a lot better since the beginning of this month, and she's back to her old self.

Lilah's first birthday is coming up and we are having a princess themed party. I can't wait! I can't believe she's already a year. Upcoming appointments include an eye appointment with Dr. Bermen and her 1 year physical with her pediatrician. I will update after these appoinments. I want to apologize for the messy blog, I still have no computer and I'm blogging from my phone.

A year ago today...

I am going to post an update on Lilah in a couple days, I just wanted to post briefly because today it has been exactly one year since we received the diagnosis of Hydrocephalus. I would like to apologize for any grammar and spelling mistakes because I am blogging from my phone due to my computer still being down. I will try to correct them as best I can, but bloggin from a phone is a pain in the butt! First off, I can't believe its been a year, it seems to have flown by. Second, looking back I can't believe how far she's come from where she was. I remember everything about that night crystal clear in my head, the excitement of getting to go to another ultrasound, and how I couldn't wait for Josh to take me out to our favorite sushi restaurant afterwords. I remember the complete and utter shock when the doc told me coldly and casually that there was something seriously wrong with Lilah's brain, and how the outcome was pretty grim. Reading my post from that day brings tears to my eyes, I was so scared of many things, but I think my biggest fear, was the fear of the unknown, and that everything was completely out of my hands. Being that I'm not a godly or religous person I didn't even have the power of prayer or the hope of a miracle to fall back on. I was pretty much hopeless. Reading blogs helped me a little, but even so, I found parents having to deal with so much medically and emotionally and these people seemed much more "together" than I was. I thought there was no way in hell I was strong enough to handle it. Even though I am reluctant to admit this I even had a discussion with Josh abbot adoption, that is how sure I was that this was something I was never going to be able to deal with. I have many regrets about the way I handled things, even if it was out of fear and grief, but I wish so badly I could go back and comfort myself and tell myself it will all be ok. I would say don't waste your nights being up all night crying, because soon your days will be filled with a sweet little girl with an insanely goofy smile. I would remind myself that I am a strong person that has lived a hard life full of obstacles that I have always been able to overcome. You honestly never know how you are going to handle something until it is thrown your way, and having a child born with disabilities is one of these things. I wish I could tell myself how I am going to have a baby girl that is strong and resilient and keeps pushing through the pain and overcoming obstacles that all the experts predicted she wouldnt be able to overcome. Most importantly I think I would tell myself that when you look at her you won't see Hydrocephalus, you won't see a disability, you will just see Lilah, beautiful, goofy, blue eyed, crazy haired Lilah ( : I wanted to end this by stating that one of my main reasons for writing this blog is to show other parents that may have recieved a recent diagnosis of Hydro that it is not the end of the world and that there is hope and light at the end of the tunnel, if I can make one person feel even a tiny bit better, then it will hold a far better purpose than just getting my feelings out. I'll be blogging soon with more great new about Lilah's progress!