Our life is on the move. Since our eye assessment I've been assertive in searching for a new eye doctor for Baby GL. I feel that I have left some of the issues on the back burner while other things have been made to be more important. I trusted that the doctors were giving me all the information that I needed. Come to find out that there were complete strangers that new my son's eye diagnosis before I even did. That's from an appointment we had in the early spring. Not acceptable. We need doctors that will take the time to talk to us and not just be a 2 dimensional person on paper. I'm extremely disappointed in how that system is working, and that's at Children's Hospital. Well, I just hope the new doctor will give us a plan. I believe that eye sight is just as important as weight gain and feeding issues. By the way, latest weight is 16lbs 1oz. We haven't done a height in a while so I'll have to do that for next post.
Speaking of feeding issues, we still continue to struggle with Baby GL's appetite. He immediately swings his head to the side and pierces his lips closed when he sees food. Once we get the first bite in he seems to get the idea, but he definitely has no interested in it. A bottle isn't as bad. He'll snack on his bottle all day. Especially in the evening and before bedtime. I have a feeling that Baby GL will have some issues with food when he's older just with he way we have to force it in him. His G-tube will probably be with him for a while. Along with that will be his O2 at night and we are being pressured about his medication. One in particular, the Viagra. We stopped the dosage due to him vomiting a lot and have slowly been introducing it again. We just stared giving the 3rd dose now after being pressured by the Pulmonary Hypertension team. I know they mean well, but they haven't a clue what it is to live with a vomiting issues. It's become so much part of our feeding ritual. We have the routine down on how to make the smallest mess. Not a habit I was dreaming about when I was thinking about being a parent.
On the flip side we have been enjoying the Autumn season. My sister and I took the kids for a quick trip to the pumpkin farm. My older nephew ran around like he just ate a pound of candy. At 2 he's not brave enough to go up onto the play set and down the slide alone. He really didn't care about the pumpkins. Baby GL wasn't too thrilled, either. I think he was more upset that I woke him from a nap to go. I'll post some picks with the pumpkins. You'll see how little interest he has in being there. The newest member, my baby nephew, his joy came from crying. This kid has a set of lungs on him. I really feel quite blessed that my son has more of a horse cry. I will take that any day over the piercing screams. My brother-in-law even agreed with that.
Babcia, Baby GL and I just went to the apple orchard for picking. I always look forward to that. He went with us last year but he was too small to do anything but be in his stroller. This time around he was not happy sticking it out in the stroller. He actually sat on the grass while we buried ourselves in the apple trees. He was having fun playing with the stroller straps and I gave him an apple to "chew" on. He has 4 teeth now so he gets those teeth marks in the apple, then he throws it. He's got the best throw I've ever seen from a baby. With these outdoor adventures comes dressing for the weather. We are back to the hat battle. How do you get these kids to keep their hats on? I think we'll be trying hat and hood so it's harder to pull off. I've bought more leg warmers, too. I LOVE baby leg warmers. Besides being cute they are so helpful as an extra layer on the legs. And if he gets to warm leg warmers, so do I. Gotta love the fashion come backs.
So, now we get to the biggest news. Baby GL took his first steps yesterday. It's bitter sweet because I wasn't there to see the first steps. My husband made sure it was the first thing I saw when I got home form work, though. It's only a few steps then a tumble, but it's such great progress. Baby GL is on the move now. He is not afraid to crawl anywhere, pull up on anything, and walk across anything that will hold him. One of my latest Craigslist finds is a kids trampoline. It's great for toddlers. Baby GL is a little small for it but he doesn't let that get in his way. I like to think the trampoline is what got him to take those first steps. He will freely crawl over to it, limb on to it, which is great because it's easily set higher than his waist. Once he's up he goes to the handle and walks his way up to standing to jump. The handle is taller than he his, but still within reaching distance. It's so cute to watch him jump. He gets the biggest smile on his face. For that face I will turn my whole living room into a playroom.
Since I've been writing this I've been asking my son's name just for personal reasons, but I feel so proud that I want to share him with the world. We battle with a name at the beginning but my heart was warmed when we named him Gianluca Valentin. He is our strong and rave little man that is proving to the world that the doctors can be wrong. He survived and is growing to be a perfect, playful little boy.
Friday, October 21, 2011
Wednesday, October 5, 2011
Eye assessment
Today, Baby GL is officially 19 months old. It' funny to count the months as they go by. I'm trying to remember what has happened over the last month and it's hard to remember. We've been adjusting to a new schedule with me working full-time again. I get the evenings while my husband takes the mornings. It's actually been nice getting my husband to try to adjust to Baby GL's needs. He has to be the one to make sure he gets his meals and naps and even therapy. It can really get complicated. I have to say he's doing a pretty good job. He's even made it to the doctor's appointments.
We are still battling the "failure to thrive" issue. We've found that instead of driving ourselves crazy trying to stuff Baby Gl, we're really following his lead. We've always done that, but know we're following a little more strict diet. I've made attempts to make baby food and it's been pretty successful. By successful, I mean, he eats it. He's still particular on texture, but I think he's warming up to trying different things. Our consistencies have been fatty yogurt and giving him as much formula as he'll drink. The formula we're on is very high calorie so if he's drinking well through the day then we should get some great weight on him. The last weight taken was already a couple weeks back but he did finally break 16lbs. He was maybe 16.4lbs. We have a couple appointments next week so we'll get an updated weight and I'm hoping for a height, too.
The few things that are memorable for me this month actually include Baby GL having a cold. He had the nastiest part of his cold during a weekend, which was good because he was miserable. I was worried that with his congestion he would have breathing issues. His breathing issues included lots of crying. He would fuss every couple hours so I decided just to have him come sleep in our bed until my husband came home from work. He still woke up early the next day. We were good for nearly a week when we had another episode of late night crying. It turned into a slumber party in mommy and daddy's bed. He wasn't settling down by himself so I brought him in bed. It's funny how sleeping with a baby is like sleeping with a dog. First, he crawls to the top of the bed. Not happy up there he maneuver's his way towards the bottom of the bed. Flip flop, he finally finds a spot to lay, while mommy and daddy hang on tight the edge of the bed. Double feature the following night.
So today we finally had our vision assessment that has been rescheduled twice. It was really informative. We had someone from Wisconsin Center for the Blind come out and actually assess how Baby GL sees. We know he can see, but it was hard to know what he sees. His official sight diagnosis from his eye doctor is near sighted in one eye and far sighted in the other. He still has issues with nystagmus, which means his eyes dont' settle, they have a slight giggle when he's looking around. This is well known in preemies that had ROP. One thing that was brought to light today was how he focuses. I never to notice to Baby GL turning his head slightly to the left when he was looking at something. In order to focus he needs to find that nul point. It's a point where he is able to find focus between both eyes. I've noticed the tilt in his head before but I never realized that it was Baby GL compensating for his vision. We got some great tips on how to stimulate him. We were even educated on what type of sunglasses to get him. It was one assessment that was actually very educational for us.
Baby GL is continuing to grow at an amazing pace. Soon I will be writing about how he's walking. Right now I'm just enjoying our small accomplishments. I'm not in a hurry to have him walking. He does get up to his walker now and cruises across the room with ease so I think walking is just around the corner. I think it's important for us to live for the moment. Even the sleepless night are memorable for me so Id hate to forget them.
We are still battling the "failure to thrive" issue. We've found that instead of driving ourselves crazy trying to stuff Baby Gl, we're really following his lead. We've always done that, but know we're following a little more strict diet. I've made attempts to make baby food and it's been pretty successful. By successful, I mean, he eats it. He's still particular on texture, but I think he's warming up to trying different things. Our consistencies have been fatty yogurt and giving him as much formula as he'll drink. The formula we're on is very high calorie so if he's drinking well through the day then we should get some great weight on him. The last weight taken was already a couple weeks back but he did finally break 16lbs. He was maybe 16.4lbs. We have a couple appointments next week so we'll get an updated weight and I'm hoping for a height, too.
The few things that are memorable for me this month actually include Baby GL having a cold. He had the nastiest part of his cold during a weekend, which was good because he was miserable. I was worried that with his congestion he would have breathing issues. His breathing issues included lots of crying. He would fuss every couple hours so I decided just to have him come sleep in our bed until my husband came home from work. He still woke up early the next day. We were good for nearly a week when we had another episode of late night crying. It turned into a slumber party in mommy and daddy's bed. He wasn't settling down by himself so I brought him in bed. It's funny how sleeping with a baby is like sleeping with a dog. First, he crawls to the top of the bed. Not happy up there he maneuver's his way towards the bottom of the bed. Flip flop, he finally finds a spot to lay, while mommy and daddy hang on tight the edge of the bed. Double feature the following night.
So today we finally had our vision assessment that has been rescheduled twice. It was really informative. We had someone from Wisconsin Center for the Blind come out and actually assess how Baby GL sees. We know he can see, but it was hard to know what he sees. His official sight diagnosis from his eye doctor is near sighted in one eye and far sighted in the other. He still has issues with nystagmus, which means his eyes dont' settle, they have a slight giggle when he's looking around. This is well known in preemies that had ROP. One thing that was brought to light today was how he focuses. I never to notice to Baby GL turning his head slightly to the left when he was looking at something. In order to focus he needs to find that nul point. It's a point where he is able to find focus between both eyes. I've noticed the tilt in his head before but I never realized that it was Baby GL compensating for his vision. We got some great tips on how to stimulate him. We were even educated on what type of sunglasses to get him. It was one assessment that was actually very educational for us.
Baby GL is continuing to grow at an amazing pace. Soon I will be writing about how he's walking. Right now I'm just enjoying our small accomplishments. I'm not in a hurry to have him walking. He does get up to his walker now and cruises across the room with ease so I think walking is just around the corner. I think it's important for us to live for the moment. Even the sleepless night are memorable for me so Id hate to forget them.
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