My baby girl is 1...

Ok she turned 1 a couple months ago, but I am finding it so hard to update seeing as how I don't have a computer, and i am so extremely busy. I will try to remember everything that has gone on since the last time I blogged.


Lilah had a wonderful first birthday party, surrounded by family and friends. She was given a high chair by her meme, and lots of toys and clothes. Her Papa set up her high chair so she was able to eat her cake by herself. She finished the whole thing. I took a ton of pics and when I am able to fix my computer I will post a whole blog page with nothing but pics ( : however my facebook page has a ton of new photos, so if you ever want to view them you can find the there, just look up Melissa Howard Berthiaume.


Health wise, nothing major, the only setback was about a couple months ago, when she had a slight issue with her weight. Michelle the visiting nurse was still making monthly visits for weight and wellness checkups. I would say around early March she was weighing in at about 18 pounds. When she was weighed the following month she went down to 17.4. We contributed it to a coupe of factors. First off, she had a touch of the G.I. bug, second, she was moving around a lot more, and last she had switched over to regular food, so she wasn't consuming the high calorie formula every four hours. She can't fit much in her little belly, pus the food I was giving her were "healthy foods", great for her body and health, her weight, not so much. We came up with different solutions to try to get in a little extra calories, such as cooking in extra butter, oil, higher calorie health foods, such as avacodo and cheese. She suggested some Pediasure or Carnation Instant Breakfast. Michelle said to try these different options for a week and she would return and see where she was at. If she had lost weight, then we would talk about possibly meeting with a nutritionist. She came back the next week and sure enough she had gained almost a whole pound. The main thing I had tried was the Pediasure, which she loved, but we also didn't want her gaining weight like crazy, so I just cut back to eight ounces a day which equals about 250 calories and 9 grams of fat. She followed up a second time, was still steadily gaining weight so officially dismissed her, no more visiting nurse! We did have a little scare with a MRSA infection, it started out as a little bump on her diaper line, and within days was a massive ball of pus, swollen up the size of a marble. I brought her in and they lanced it, and gave her a topical and oral antibiotic. thank god it didn't turn into anything worse.


Switching over to "normal food"has been an easy transition, she pretty much likes anything I give her. She has started to self feed and a week later she was a master at picking up anything on her tray. She is also drinking out of a sippy cup with a straw, for some reason she can drink out pof a straw just fine but has trouble with a standard sippy cup, most likely because she has a hard time tipping them. She has recently learned to hold her own bottle and drink it, as long as she's lying down.


New accomplishments through therapy include, as I mentioned, the self feeding, and drinking out a cup. We taught her this by starting with what her therapists call The Bear. It is basically a honey container with a straw sticking out of the top. It is easy to suck from and easy to squeeze in case she needed a little help. As it turned out she didn't need any help, she took to it right away, and we practiced it with her for a couple weeks prior to buying a sippy cup. She is able to kneel at a stool and keep her balance. She is coming to sit unassisted, I am so proud of this milestone! We always clap and make a big deal when she does it, so now every time she sits she looks at us with a big grin and starts clapping, looks like she's proud of herself too! She is creeping on her stomach, and even gets up on her knees for a split second, I honestly wouldn't be surprised if she starts crawling within a couple months. It seems like all of a sudden her motor skills have improved dramatically within a short amount of time. She is saying mama, dada, baba and has been making all kinds of silly sounds!


Doc appointments included a follow-up with Dr. Berman. We didn't take long at Berman's, because he came in, took a quick look at her, had her follow some objects, lights, etc, and he was amazed at the improvement of the Nystagmus, and her focusing. He said she seemed to go slightly cross eyed at times, but other then that he was happy with what he saw. We are going back in 6 months to see how she is, how she's seeing, and make sure we're still seeing improvement. Her one year physical went exceptionally well. Dr Landes. was impressed with her overall weight gain, head circumference, growth, everything. I mentioned the weight loss and she said not to worry, as long as she is going up on the charts and steadily gaining weight, I shouldn't worry about it. She was also impressed with Lilah's eye improvements, and thought cognitively and developmentally she looked great. She had her vaccines, poor baby, and her last Synagis shot!


Every morning when I get her out of bed and I get a big smile and a mama, it is the most amazing feeling in the world. My heart literally melts everytime I see her toothy grin, which now includes a top tooth! I want everyone to be able to see lots of pics, so I will gather a bunch and post as soon as my comp is fixed. Thanks for reading my blog and for eveyones continued support and prayers, it means the world to me!

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!

The Holidays Are Here!

This post was originally supposed to be in Dec. but my computer crashed, I have been without one for awhile, in the meantime I jotted down my entries the old fashion way, with a paper and a pen (gasp) so while this post will show todays date (feb 5) it was originally written sometime toward the end of December...

  It's been hectic with the holidays, and I haven't had a reliable computer in months, so this post may be a bit long.

    Lilah's first Halloween was so much fun, although a bit cold. Thankfully her costume was nice and warm. She was a pretty pink flower. We headed down to Mass because Halloween in Josh's family is kind of a big deal, and an excuse for everyone to get together with all the kids. We walked around Josh's aunts house as we do every year. She was her usual easy going self despite the long time outside in the cold.

   We were in Mass again for Thanksgiving, which we were happy to be able to make another trip down to spend with Josh's family. I bought pureed turkey and sweet potatoes so Lilah would have her very own Thanksgiving dinner.

  We headed down to Mass yet again for an early Christmas with the in-laws. Josh's mom and aunts put on an x-mas party every year, and this was Lilah's first. Chevelle and Lilah had matching Santa dresses and they looked adorable.Lilah seemed a little leery with all the strange faces, but she was well behaved the whole time, in fact she napped through most of it. Christmas day was spent back up in Maine at our house, and we sat Lilah in her Bumbo surrounded by all her presents. She seemed disinterested, but as most babies do, found stuffing wrapping paper in her mouth to be a good time.

  In the past couple months, between all the holiday activities, Lilah has been making progress in every area. It can seem a little slow at times,  but Karen her PT pointed out that as long as they see progress, even if it is a bit slow is a good sign. They grow concerned when babies plateau at an early age, and this hasn't been the case with Lilah. In therapy, there had been a four or five week period where she screamed through her entire OT and PT sessions. It was so sudden, she went from being comfortable with Karen and Amy to completely melting down, acting like they were complete strangers sent to torture her. It can be hard when your baby acts like she's in pain, not to rush right over, pick her up, and comfort her. Karen thought that wouldn't be productive, because then she would learn that when she cried, that meant her mommy would come "save her" from the mean old therapist. I knew she wasn't in pain because the exercises and activities they had been doing with her, are the same ones I do with her on a regular basis without incident. They just kept working through the screaming and getting in as much as they could. Amy said it was most likely a phase and she would get over it. Sure enough, as Amy predicted she did. One day Amy walked in and Lilah had that look on her face like she was going to lose it, whimpered a couple times, then eventually started smiling and playing with the toys Amy provided for her. Lilah's OT sessions have been moved to twice a week because she thought she could really benefit from it. Lilah has learned to roll from stomach to back, we are working on the other way around, but so far it hasn't happened. I am thinking that even if she was physically capable of it, she would probably avoid it like the plague, because she hates being on her tummy so much. She can now sit unsupported for a couple minutes here and there if she has her Boppy to support her back. Her balance is getting there, but she likes to fling herself back a lot which results in the loss of her balance. It is also hard for her to coordinate sitting with playing with toys, it's easier for her to sit if she isn't playing with anything.

  A couple weeks ago she had her cardiologist appointment to see if the chamber to her heart had closed. She also had a tiny hole in her heart that they wanted to check out to see if it had closed. Thankfully her heart was perfect and healthy, and she never has to go back again, unless there is a specific problem. 

Healthwise she has been doing so-so, no major issues. Just quite a few ear infections, fevers, and runny noses. It seems like she is constantly stuffed up. I hope her health improves when the winter months are over. Her Pulmonologist said this winter will be the test with her. If she can make it through this winter relatively unscathed, then the following winters should be a breeze. She also has started a monthly vaccine called synagis, which protects her from RSV, a deadly respitory virus that affects preemies. Jan is a busy month with a few appts., including her 9 month check-up and the preemie clinic. I will try my hardest to update as these appointments happen instead of waiting so long between posts.

As far as Lilah goes, she is certainly developing a little personality. She is constantly smiling, babbling, happy. She has such a sweet manner about her. Her gummy, goofy smile can't help but brighten your day. She is an absolute joy to be around, we all love her so much, and are thankful to have her in our lives. It's been a rough year but I would go through it again in a second, because she makes me so happy.  

I hope everyone had a wonderful holiday, and below I included a couple Holiday photos. They're a little mixed up, but the first one is Lilah surrounded by her presents (spoiled baby). The second one is Daddy feeding Lilah her Thanksgiving dinner. The next one is Lilah in her Halloween costume, and the last one is Lilah eating some wrapping paper. Enjoy!

9 Year Anniversary!

I have a blog post about Lilah I will be posting in a few days, I just wanted to add some pictures before I posted it, but in the meantime I wanted to write about the past 9 years I have spent with my amazing husband. I met Josh at a time when my life was going nowhere. I was in and out of trouble, I had no goals or ambition, I wasn't being a proper mother to my oldest daughter Brittany. He had been a good friend to me in the previous 3 years before we started dating, but I saw him as no more then that. I always admired him as a father to his son Tyler because Brits dad could of cared less, anad was in and out of jail. I thought to myself how refreshing that a young kid can step up and be a dad, when so many adults out there can't. Josh was like a breathe of fresh air that came blowing into my life when I felt like I was suffocating. Pretty much right off the bat I knew there was something different about him, that he actually cared. I had been in horrible,abusive relationships all of my teenage years, and was so used to being used that I was in shock that someone was treating me so well. Almost right from the beginnaing he told me that he was going to take care of me and would always be here for me. He told me that he could tell that I was a scared little girl, and that he would help me grow into a mature, responsible adult. He has gone above and beyond his promise, never once breaking it and I feel like there is no way I could repay what he has done. I honestly can say I don't know where I would be without him, but I can guarantee my life would be nothing like it is now. Our relationship has without a doubt been pushed to it's limits. We have been through hell and back, but have always managed to come out ok, with our relationship intact. There have been times where I even doubted we could make it, and there have been times I have pushed him away, thinking that I didn't deserve happiness and love. I am so glad he stuck it out with me and didn't give up on me. He has given me the most amazing family, his family he had before me, and our family together. Lilah came at a time when our love wasn't as strong as it had been in the past, and she has just brought so much joy and happiness to our lives. I believe she was sent here for a reason and I have a feeling many people's lifes are going to be enriched from knowing her. I just want to say to him that you are an angel to me, someone that has saved me and guided me through the darkest points in my life. I love you...

10 years ago...

6 month check-up, and many other appt's.

I know Lilah's technically almost 7 months, but I haven't had much time to update. She had her 6 month check-up with Dr. Landes. She weighed 13 pounds 2 ounces and was 24 inches long. She is now officially on the charts! She is in the 5th %, which doesn't seem that small to me because Chevelle has always been in the 5th%. Her head circumference jumped up to a point where it is now following a normal "curve" on the growth chart. I believe it was 38 inches in diameter. Last visit it had kind of hit a plateau, and that is why she sent her to get a cat-scan. She said that the growth was very promising, and we no longer had to worry about that at this time. She had all her shots, which she wasn't very happy about (surprise, surprise). She noted that the Nystagmus that she saw at her four month visit was much less noticeable at this visit. They asked me all the milestone questions, and the only ones they asked that she couldn't do was rolling over, and transfering an object from hand to hand. Dr. Landes told me since her she was gaining weight normally, I could take her off the Neosure formula, and put her on the formula of my choice. She also told me I could start introducing cereal and solids. I was excited about this because I always enjoyed feeding my babies baby food, and it seems like a step in the right direction to "normalcy" lol. I asked her if I could take her off the poly-vites, because I wasn't breast feeding any more, she said she wanted to test her iron levels first, and if they were normal then we could take her off them. The test came back that she was slightly anemic, which is really common in babies born prematurely, so she said to continue with the vitamins and at her next visit we would talk about taking her off them.

A week and a half prior to her check-up she had gone to the pulmonologist, and she was also happy with how she looked and sounded, lung-wise. I was told to decrease her meds even more, so now she is on very minute doses of meds. She told me to continue oxygen as we have been, and check back in a month. A little frustrating, but honestly the time seems to fly by, so I am praying it will be different at the next appointment.

Somewhere between all these appointments, I can't remember the dates, Lilah was brought into her docs because she had been running a fever. It happened to be Friday night, and I was debating on what to do. With my other kids I probably would have waited until Monday then brought her in, but in Lilah's case, a fever could mean an infection in her shunt. I believed that this was definately NOT the case, especially since she had a cold, but you really want to just play it safe, and not take any chances. So I ultimately decided to call her doc Sat. morning. I was put through to the nurse that was on call that weekend. She agreed since she was a preemie and had a shunt that she should be seen right away. The practice that she goes to has many offices, and they actually have one in South Portland that is opened on the weekend. She told me to come right over, and the diagnosis was an ear infection, so she was put on amoxycillin for 10 days. First time getting an illness in 6 months, not too bad ( :

We started working wiuth Lilah's new therapist Amy. Susan was right I do like her a lot, although I admit I do really miss Susan. Amy is young and pretty and bubbly. So sweet too. She has a three year old and an 18 month old, and literally lives right down the street about half a mile. She pretty much continued where Susan left off, so all of the therapy sessions have pretty much been the same. The one new thing that she wanted to try was infant massage. She is a licensed infant masseuse, and asked if I would like her to teach me. She said she thought it would be good for Lilah as far as relaxing her before her sessions, and loosening her muscles a little bit, and also as a bonding experience for Lilah and I. The following therapy appointment she started teaching me and Lilah seemed to really enjoy it. Amy cautioned me beforehand that not all babies like to be touched like that, and sometimes they have to have to be massaged a couple times so they can get used to it. She was surprised at how well she responded to it since it was her first time. Her therapy has been coming along smoothly, really nothing new to report on that.

I had her neurology appoinment coming up which was the one that I was a little on edge about. For one Susan hadn't had the best things to say about Dr. Rioux, and on top of that I was worried he was going to give me doom and gloom or something lol. I know I am a little paranoid. Josh came with me which I was happy about, he always thinks of good questions to ask, and he retains all the info really well, which I have a hard time doing. After waiting FOREVER, Dr. Rioux came in with a med student. My first impression of him was a good one, he seemed really nice and was reallly good with Lilah . He went over a little of Lilah's history with me, and also what my concerns and questions were. The main reason she went to see him was the shaking of her eyes, which as I 've mentioned have improved greatly. He noticed it a little bit, but said they looked ok, he also had to take my word for it because he hadn't seen her when she was having the severe shaking. He told me as long as they seemed to be improving that we would just kind of keep an eye on it over time. He did some neurological tests, had her follow objects, pulled her up to a sitting position, checked her reflexes. He was really impressed with her progress, and said he was pleased to see that she was "talking" a lot, and was really expressive, responsive and interactive. He asked if there was any motor problems, and I told him my main concern was the tightness in her left arm, and how she had a strong preference in the right arm. He went on to tell me that it made sense that she would have problems with that side of her body, because the majority of the fluid was in the right side of the brain. Since the halves off the brain control the opposite side oif the body, it made sense she would have motor control problems in that side. He did tell me that it looked like she still moved it and seemed able to use it, so that was a good sign. I told him her therapists were aware of her limitations in this arm, and we were working on it in theraoy. He mentioned that some therapists use immobilizations therapies, which basically consists of constricting the good arm, so they are forced to use the bad one. I said I would mention it to Karen her PT. I was able to see her most recent catscan, which was taken in August, anbd he pointed out the areas that still had a little bit of fluid in it, but nothing to be concerned about. The ventricles are still a little big, but compared to how everything looked in the previous cat scan taken when she was born, he said the difference is remarkable. Her catscan she had taken after birth, was pretty much all dark spots, where the fluid was. This one you could see was filled with brain lol. The way it is supposed to look. It is a really good sign when the brain expands to fill the space that was once filled by fluid. We had a talk about motor issues and he said that may not be present for some time still. There is still no way of telling how she might be in a couple years, including if she has Cerebral Palsy, or the severity of it. He said only time will tell, which I've known this from the beginning, nothing new there. He has seen this severity of hydro and worse, where the children do fine, and he has also seen less degrees of hydro, where the kids are worse off, so no way of telling yet. I was also warned that seizures can pop up at anytime, and he gave me a pamplet on what to look for and what to do in case she has one. He said just keep doing what we're doing, and be optomistic, and hopefully she can continue making the progress that she has so far. We made a 6 month follow-up appointment, to check in and see how she is doing.

I will end this by saying Lilah has started solids and has been tolerating them wonderfully. She gobbles them down, with no problem. She started off a little messy, but is now a pro, and can eat without making too much of a mess. She is a little piggy! She has tried peas, carrots, sweet potatos, bananas, pears, and apples. Her fave seems to be sweet potatos. Karen did warn me though to really watch what I give her, because she is not as mobile as most babies and is not going to be burning off the baby fat as quicly or as easily. I will leave you with some pictures of her eating her food, they are from when she first started so mind you she made a mess!! I also included a pic that I absolutely love, because she is flashing that huge grin that brightens everybodys day!

National Hydrocephalus Awareness month!

It's actually been almost a month since her eye appointment, but I am just finding time now to sit down and blog about it. In the future I am going to try my hardest to update as soon as Lilah has had an appointment, because I find I have a hard time remembering exactly what was said and done. As most people know I have a horrible memory, so it is best if I write it down as soon as it occurs. I will try my best to recall this past month.

I was warned by Susan that Dr. Bermen wasn't the friendliest guy, not that that surprises me too much, seeing as how 90% of the specialists I deal with up here are a-holes. We pulled up to the Maine Eye Center in Portland, which just happens to be this massive building. There was a parking lot full of cars. You walked in and there was actually an information desk to direct you where to go and a map of the place. I guess they do everything there including lasik eye surgery and other eye related surgeries. Dr. Bermen is a pediatric opthamologist, so of course there was a waiting room full of adorable children with big glasses lol Initially we didn't have to wait that long before they called us in. The nurse asked us some standard questions, like what are concerns were. The doc came in and did some tests that pretty much involved looking in her eyes with a light, turning the light on and off, i'm assuming to check how they dialate, and spining her around and around on his lap in a chair. I guess he did this to see how bad her eyes shake, because I mentioned this to him. He immediately noticed the nystagmus ( her shaking eyes). In fact they were quite shaky, the most I've seen them in awhile. In a way I was glad they were doing this because, I was afraid he wouldn't get to see first hand what I was talking about. He noted Intermittent Nystagmus which basically means her eyes shake but not all the time. Nystagmus is a constant shaking of the eyes. I couldn't read him too well but he seemed to be concerned about what he saw. The whole time I was just thinking please whatever it is, just don't let her be completely blind. I dodn't find him to be a kerk per se, but he was kind of cold and uncaring. I'll never understand why doctors choose their specialty in pediatrics if they have no bedside manner, anyways, the nurse put drops in her eyes to dialate the pupils, then sent us out to the waiting room to wait for them to dialate. This took about 45 minutes in which she was able to sleep. Let's just say she wasn't too happy with the drops and screamed until she was blue in the face. In the meantime, while we were waiting, he had her latest cat scan faxed over. We were called back in and he took another look at her eyes. I'm thinking well do you know what the hell is going on or what? He says well the eye itself is fine, the optic nerve wasn't damaged from the pressure, blah blah blah The eye looks great and is healthy. Ok, but does this mean she can see? Well he said she could possibly have a visual impairment, but if she does it has nothing to do with the eye, it has to do with the way the brain processes the images her eye is seeing. The eye is essentially like a camera lens it takes the pictures and the brain deciphers what the "camera" is seeing. The hydrocephalus might have done damage to that part of the brain. So his advice: go see a neurologist. So basically I have no answers. Then again he was using huge medical terms and I didn't understand half the words that came out of his mouth. But this is what I got from it, Josh too. While he was explaining everything to me he mentioned that he had the results of the cat scan. I said well I 've been waiting for the results is it normal? He told me that I should talk to her neurosurgeon about that. So I'm freaking out thinking something is seriously worng, so I said well I want to know what it says. He told me it said something about the collapse of the ventricular system or something to that effect. I had read up on this before and read that this can happen in the case of over draining. This was the reason he ordered the scan in the first place, because he suspected over draining. I asked him why they wouldn't call me with results like that, he said it could be that he just wasn't planning on doing anything about it, but told me I should call them anyways just to be sure.

When we arrived home, I had Josh call Dr. Wilson to see about the cat scan. We called at 4:30 which is a half hour before they closed. Josh explained the situation to the nurse, and snapped at him telling him I know nothing of this, I don't know what you're talking about. She said she would have Dr. Wilson call us back. Well they never called us back, so Josh called them first thing in the morning, and a different nurse returned the call, and told us Dr. Wilson told her to tell us the cat scan was quote unquote "perfect" It was exactly how he wanted it to look. So I'm assuming the stuff that was on there is no big deal. Again, I am no doctor so I guess I just have to trust what they say.

So as you all know the past couple of months there has been concern for Lilah's eye sight. The main reason for this is the fact that she hasn't been tracking objects, and her eyes are always shaking all over the place so it seems like she is having a hard time focusing. Well I am happy to report that in the past three weeks this has changed dramatically. I noticed her eyeing a toy when I had her on her little play mat that my friend Tammy had given me. It has a big mirror dangling from the middle and a couple big hanging toys on the side. I wasn't sure if this was a coincidence, but then I saw her reaching and touching the toy. She started smiling and wouldn't stop! It was so cute, and I was so proud of her. The next thing she noticed was the mirror, as soon as she saw her refelxion she let out a big grin and was cooing non-stop. My sister was here and she saw it too. We couldn't believe how cute she looked. Ever since then the second I put her on it she starts to smile and coo. The following Wednesday I showed Susan what she was doing and she was absolutely thrilled. This is the first time she has actually witnessed her focusing on something and we could tell she was looking at her reflexion and responding to something visual instead of just sounds. Since the mirror is directly above her, it keeps her head at mid-line (looking straight ahead) which is what we have been trying to do for the past couple months. She told me this was really great to see. It pretty much proves that she's not completely blind. I mean it doesn't tell us how well she's seeing but at least we know she's seeing SOMETHING. Towards the end of her therapy session, she started getting real fussy, we couldn't calm her down. Well Susan placed her on her mat and she instantly stopped crying and let out a big grin. Susan said in her 30 years as an OT she had never seen a baby respond so happily to one of those play mats lol She hasn't made too much progress being on her tummy, she still hates it, but she is holding her head up better in her bumbo, and tolerating her time in it much better. I finally feel like I can see a vast improvement in her, and it gives me even more hope for her future than I already have. On a sad note, Susan, her OT, is leaving us. She is going on medical leave indefinately. I have grown so close to her in these past four months, and feel like she has helped Lilah tremendously. I am going to miss her a lot. She told me my new OT is a woman named Amy. She told me if she could have hand picked her new OT she would be it. She assured me that I will like Amy even more than I like her. I guess she is fairly young and has two small children, and Susan thinks I will get along good with her. I am going to meet with her next week.

After much thinking, and much advice from countless people involved in Lilah's care, I have decided to apply for dissability for her. In the past I felt like this might be a crutch, and would keep her from pushing herself and by applying I am somehow admitting she is going to be disabled lol Then her nurse told me that she knows parents that file for dissability on their premature infants, and get approved. She said especially since we are going through financial hardships right now, any little bit will help. So I finally relented and filled out an application and did an over the phone appointment. To say the application was long and tedious would be an understatement. I had to give names, addresses, and phone numbers of all her docs. I had to put what she saw them for, when she last saw them, when she was seeing them again. What treatments they provided.

Dates of visits, hospitalizations, cat-scans, ultrasounds. I had to list meds she was taking. I could go on and on. Anyways they said I should recieve an answer in about 4 to 5 months. Well I think that prett much sums up the past couple weeks. I want to end this by saying September is National Hydrocephalus Awareness Month, and there is so many people who have never even heard about this condition ( I was one of these people), we need to spread awareness and bring more attention to hydrocephalus, here is some interesting info I would like to share:

The National Institutes for Health, which controls most of the federal funding for these types of conditions states that the number of people who develop hydrocephalus or are currently living wiht it is difficult to establish since there is no national registry or database of people with the condition. However, experts estimate that hydrocephalus affects approximately 1 in 500, which makes hydrocephalus as common as Downs Syndrome or Juvenile Diabetes, yet the publis is largely unaware of the condition.

Facts about Hydrocaphalus

Approximately 1 million people have hydrocephalus in the U.S.

There are believed to be 180 different causes

There is no cure and very little research. The NIH spends 60 cents per person with hydro per year compared to 300 per person per year with juvenile diabetes though the prevalence of the disease is the same.

The standard treatment, a shunt, was developed in 1956 has a 50% failure rate after just two years which is the reason why so many have to have multiple brain surgeries just to stay alive.

60% percent of children with hydro are not independent as adults and require assistance. (this is the first time I've read this stat, so not too sure on the accuracy)

50% percent of children with hydro score 80 or below on standardized intelligence tests. (same wtih this one).

It costs the United states 1 billion per year in health care costs to treat hydrocephalus.

I hope someday we can increase the publics awarness and raise funds for research, so spread the word!!