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!