Thursday, May 31, 2012

Andy attempting to communicate verbally

Andy gave me so much eye contact today. It's been getting better and better each day. He seems to really be letting me in, or wanting to connect with me more. I am just so ready to hear him, and I accept him whole-heartedly for who he is right now. I am being extremely patient, and I feel very open right now. Open and at peace with whatever is going to happen next with Andy's development.

Today, I told Andy while feeding him, "say ahhh", and he opened his mouth and in a cute baby voice said "ahhh". I loved it! It was so awesome,  just so great to hear him respond to me verbally. It had me so happy all day long. He also tried to say "ready", he made the "eee" sound for eat several times, he's saying "up" today, "mmm" sound for more, and sounded like he sang "up above world" for Twinkle, Twinkle, Little Star.

Over the last few days, I've been making some changes with myself, spiritually and mentally. I'm trying to find out more about energy and healing. I've been praying so much, and reading up on spiritual intuition, and intuitive parenting with Dr. Deb Snyder. She has some very helpful information, which I've already been putting into use to open up my heart and mind to Andy. I just really feel at peace, and feel a more open connection with Andy, by doing small things.

I hope that Andy is able to sense my full acceptance of him, and my deep love for him. I'm trying to show him love, more than anything, and not demonstrate any disappointment to him. Because I honestly feel that things are what they are, and I can't spend my days longing for more. And I can't let him feel that he isn't good enough for us. I just want him to feel so much love and acceptance, and I think he does. I really think he does.

Saturday, May 26, 2012

New Expectations

I've been working more on Andy standing and playing lately. Just so he can experience the feeling of being upright. I have to be careful though, because he doesn't have protective measures for falling. He tends to fall backwards or forwards lately, the side falling seems to have vanished. He's not as floppy as he used to be with just falling any which way like a rag doll. He stands in a stronger stance.

I think he really enjoys being upright though. He stood for 20 minutes today, playing at a sand table with his cousins. It really felt like he was a part of the group, instead of off on his own. He tired, then continued to play in the sand while sitting in a chair. It was very therapeutic play.

Lately, I've been trying to work on Andy's hand-releasing skills. He doesn't easily release food into his mouth, nor does he easily release toys into containers. Realistically, there's no way he can stack blocks, or self-feed finger foods, when his releasing skills are so poor. I try to encourage him by saying "let go", and then "good job letting go of the toy", or "wow you put the toy down".

Andy just turned three, and right now, I do not expect him to be walking in a year from now. I only hope that he will be able to stand independently. I don't know if he will get crawling. It seems way to complicated for him. Walking seems like a much easier task. He stands stronger each day we practice.

Seeing him gain strength really motivates me. It also feels so much better to see him standing upright. It helps to feel that he is really three. At the same time, I feel that I have really let go of wanting Andy to hit milestones. He just isn't going to be a kid that marches to the beat of that drum.

Friday, May 25, 2012

Risperdal may be working

We have finally landed on a dose of Risperdal, and a good time frame for it. I give Andy 0.2 ml soon after he wakes up. We started at .25ml at night, went up to .50ml at night, it was way too much. He started having difficulty sleeping. We switch over to morning dosing. 0.5ml during the day was still way too much, he was just so tired all day, couldn't do therapy. We moved down to 0.25ml, and he was still a bit noticeably sleepy, wanted to give up. The nurse suggested half of the 0.25, but instead I just came down one notch to 0.2ml. It seems to be working well. He doesn't seem too tired, no sleep disturbances, and is sometimes happy and in a good mood. We hardly ever saw him happy and in a good mood for so long, too long. Around 6 months, pre-medication. Just constant inconsolable crying, and so unhappy all the time. My daughter even mentioned today "wow mom, Andy is so happy and in a good mood". Yes, he is.

Friday, May 18, 2012

Andy's Third Birthday!

Andy's third birthday was today! He had a great birthday. We had a small party for him with only the grandparents over. We will have a bigger party on his sisters birthday in a few days. All of us got him toys that he really enjoys, that are developmentally appropriate and that are therapeutic.

I loved how the day went, because Andy wasn't overwhelmed or overstimulated at all. He really enjoyed the day, and I had quality time with him. He went to bed on time, and fell asleep right away. The day was such a success, and I was gushing with happiness the whole time.

Friday, May 11, 2012

Changing the Risperdal regimen

I spoke with Andy's nurse today about my concerns that the Risperdal given before bed may be giving him insomnia. She responded that it usually helps children sleep better, but one of Risperdal's side effects is "difficulty sleeping". It is very uncharacteristic of Andy to wake in the night, crying and unable to return to sleep. This has happened five nights over the last three and a half weeks.

We are going to switch him to getting a.25ml dose in the morning, instead of before bed. We'll see how this goes, before weaning him off to discontinue the Risperdal. She informed me that in order to wean from Risperdal, we will first have to step down to the lowest dose. He is currently only at .50ml, so we will return to the .25ml this weekend. Then she wants him to receive it for four days at .25ml, then we can stop the meds all together.

I am willing to try the morning doses through the weekend, but if things still seem off for him, we will just discontinue. Not sure if we will try another medication for him or not. I guess it depends on whether he goes back to seriously ridiculous meltdowns and crying or not.

In terms of his mobility, he has made minor improvements. He is standing a little better, and going from sit to stand slightly better. He is scooting around a little bit. He occasionally makes new sounds, but not really. He was saying "wow" a lot when he was excited yesterday at his PT visit. His sister was making him laugh, and he was excited and screeches out "woooooww". He was also shaking his head a lot at the visit, whenever the PT asked him to do something, but I don't know if he was trying to tell her "no" or not.

Tuesday, May 8, 2012

Confused about Risperdal

We are still giving Andy Risperdal. So far in the three weeks of the meds, he has had insomnia twice. During the 2nd week of meds, he almost seemed to be getting worse. However, his third week now, he seems to be much better. We are confused. Whether to keep him on it, is he really benefitting from it, we are not sure.

My main goal is to have his behavior out of the meltdowns-all-day realm in time for school in the fall. I guess if the medication seems to be doing that, we'll keep moving forward with it. If we start to see a lot of insomnia, or daytime crankiness, then we'll reconsider. I'll have to keep a close eye over the next couple of weeks.

Saturday, May 5, 2012

Concerns about Risperdal

Andy is on day three of increasing his dose of Risperdal to 0.50 ml at bedtime. I am concerned that he could be getting insomnia from it. It doesn't happen every single night, but it has happened twice in the last four days. He wakes up at 4am and cries until 5 or 6am. I try to calm him, but can't. He is unable to get back to sleep, so I lie awake and worry and wonder if he should be taken off of this medication. He is not the type that will sleep with me in my bed, and does not like to cuddle. So, all I can do is leave him in his crib crying.

It is unusual for Andy to wake in the night at all. He's usually out for the full 12 hours. We also think that he isn't really showing any better behavior just yet. If anything he's showing more crankiness, and more frequent outbursts. I'll be calling the neuro office on Monday with my concerns, and I'll be awaiting their return call as they are always really busy.

His pharmacy told me that I cannot just discontinue the drug. They said he has to be titrated off of it, or weaned off of it. I've also read this online from adults who've been taking it. Some of them reported that after being on the drug for two weeks, they started to feel like they had a hangover during the day. Or that they were hit by a truck. I sure don't want Andy feeling this way. Others reported they had no side effects at all. It's very confusing. We desperately want to help him, and our family, but we don't want to make matters worse.

This stinks.

Thursday, May 3, 2012

Tough time with Inconsolable crying

Andrew has been on Risperidal for about 10 days now. I don't know if much has changed. He is still sleeping soundly at night, thank God. However, his crying fits have kicked up a notch again in the last few days. He seems to get bored and start crying out of control. Today they started with me setting him down just to use the bathroom. I put toys all around him and walked away. I asked my daughter to play with him, but she wanted nothing to do with him because he was crying. I could hear him crashing all around the room and screaming. I thought next time he's going in his crib, and that's it. He just doesn't last even one minute with me not around.

At school, he'll do okay with others around. I think he just doesn't want to be alone. But there are times when I can leave him playing in a room with toys he's interested in, and I can sneak into the kitchen to make dinner. There are other times when he screams the whole time I've left him alone to make dinner. We try music, and DVDs, and toys, it's all hit or miss. The medication he is taking is before bed, and I am wondering now if he needs to also be on a different medication for during the day.

I am totally losing it here, and honestly don't know what to do with him right now to keep him happy. I have to be able to clean the house and make meals, I can't constantly be right at his side. Yesterday, on our way home from the doctor he screamed the entire 10 minute ride home. It was so awful. When we get inside, I put him straight in his crib when he is like this. He continues to have a fit for 10-20 minutes in his crib, then either falls asleep or starts to calm down. When I bring him out, if he starts up again, I put him back in his crib.

It's just been terrible, and I feel that this whole parenting experience with him has just been pure torture. It affects me and my husband so negatively, its a miracle that we are holding it together. I got out on Saturday for a few hours, but my husband told me that Andy cried nearly the whole time. It just really makes me angry and upset that this has to be my parenting experience. I am very grateful for my typical daughter, however, Andy exhausts all my energy so there is nothing left for my daughter.

I feel that this fall will bring a whole new chapter for our family with Andy starting preschool for several hours a day. I can hardly wait for it to start.

Tuesday, May 1, 2012

Gross motor progression?

Is it finally time for gross motor progression? I haven't seen anything with speech for a week or more, so I started doubting the wonders of DHA/fish oil. By the way, his third neurologist told me, after I asked "what dosage of DHA do you recommend?", he replied, "I don't use that".

Moving forward, today Andy is responding to me telling him, "hands on" to get him to hold on to something in order to steady himself. His new private PT has been telling him these words "hands on" before he attempts to stand up. He was sitting on my lap today in front of the bath tub, I told him "Andy hands on" and he grabbed the bath tub. I put my hands on his hips and said "stand up", and he stood up without my assistance. I then grabbed a step stool that was a little higher for him to sit on, and we did it again. He put his hands up and held on, but needed a small boost to stand up. When we did it again, he was clearly tired, and needed the same boost, but was pulling himself up.

It would be so great to finally see some progression in the gross motor area. I would love for him to be able to talk, because I think it is the ultimate in the area of cognition. However, gross motor is really needed for him to be more functional at home and school right now.

I used to think that gross motor progression was vital to Andy learning how to speak, but I don't think it is. I've seen a few children now, who are able to speak, but cannot move around. So, it seems that certain children have the speech area of their brain turned on, and others don't. I am hoping that Andy's gross motor is starting to make better connections. Maybe this is why speech progression has stopped, because his brain is about to make some gross motor progression. I was bummed to see his new sounds stopping, but maybe it is because some new movements are occurring.