Saturday, July 12, 2008

Botox and Serial Casting next Friday!

Andres has another botox appointment next Friday because his legs have become tight again. The good thing is that this time his first serial cast will be placed the same day that he has the botox done. I'm excited because I love what the botox did last time; (with the exception of that idiot doctor taking off his casts WAY too early) but at the same time I'm dreading it because he did horrible when he came out of the anaesthesia. Well that, and it made bathing him a little challenging. I hope this all goes well~If it's anything like last time, he'll be trying to be more independent within the next month. I'll keep you posted of how everything goes after the surgery! :-D


Friday, July 11, 2008

Someone remind me there are good days in Holland too...

You know I could explain the whole week and everything, but it doesn't matter. I just need to know there are good days too. I tried to read "success" stories and it didn't help. I tried to remember he's with me for a reason. It doesn't matter. It's simply not what I signed up for and I'm pissed. I want that doctor to pay. Not because I want money but I want him to pay for what he's done to us. To me. To my son. I'm just angry and upset and I want this to all be not true. I know a lot of my posts are like this lately but this week was exceptional and we've been in the hospital and he regressed in his motion and I'm getting hosed at work and I just haven't been able to post much except this. Somebody just tell me it will be okay and there will be good days.
Kristi & Hunter
(cross posted at the "other" places too... sorry... I just need someone's support right now)

Thursday, July 10, 2008

Going Back to Baby Food

Mia has hardly eaten this past month. She refuses most foods, including sweets (sometimes I will try and give her something sweet just to see if she will eat it). She does drink about 32 ounces of pediasure a day. She can eat.As a baby she ate pretty well but she didn't gain a lot of weight. She would eat a couple of jars of baby food at one time without a problem. Over the past month she just won't eat. She is so skinny already that I worry about her not getting enough calories. She has therapy 7 times a week so she needs the energy!
Yesterday I broke down and bough baby food. I know baby food is pretty low in calories, but I am trying to get some balance in her meals (veggies, meat, fruit). She will eat yogurt and sometimes will eat spoonfuls of peanut butter. I am not sure why she is reverting back to only pureed foods. I am in the process of switching her pediatrician so I have yet to talk to her ped about this. I did mention it to the OT, but she didn't have a lot to offer on this topic. Mia has almost all of her teeth. When the food aversion first started I blammed it on her new molars that were coming in, but they are in now.
I don't think she has any swallowing issues as she used to eat. Am I doing her an injustice by going back to baby food?

How much therapy is TOO much?

I am struggling with the amount of therapy that Sammy is getting. At first I wanted more, now we have too much, I just was wondering how you ladies have found a balance between everything. I think at first I was like ok this is my number one priority. Now, I am feeling like our day centers around when Sammy has therapy. If I only had him I would feel like it was great. But I have four other kids that deserve my time and attention too. Just such a balancing act!!!! Sammy has therapy five days a week. One day they come here for infant development, and the other four days we go to the hospital for his therapy. I think in the fall I am going to do every other week with infant development and one day a week at the hospital, but he is doing so well as of late, I wonder if that is because of all this extra therapy!!! It is just so hard!

Tuesday, July 8, 2008

Arm Splints: Good or Bad???

Emma's arms are the most spastic part of her body, above her legs and all else. She has trouble with bearing weight on them, reaching, crawling on hands and knees. She tends to keep the flexed toward herself, even though we do ROM and exercise on them daily. So, this limits her in many ways. She cannot feed herself or get herself to her walker from the floor. It literally makes her completely dependent in spite of all her accomplishments. We are still working on getting onto her hands and knees and bearing weigh on her arms. She likes to sit on her heels, so it works out okay. She isn't a huge W sitter, but a big heel sitter. When trying to help her, she will pull her arms back up. With this said, could arm splints or immobilizers help? Are there any good ones with velcro that are easy to get on?? I have tried the Uria splints that inflate, and they are a pain in the butt. Are there any suggestion that you can give me to help get some strength into her arms? This is important for her to get more independence. Thanks!

Emma Eats at Friday's

Emma at spaghetti off the kid's menu at Friday's over the weekend. This was the first time that she has ever done this. For the past 4 years I have always had to puree her food, so we don't eat out that much. I usually have to take her food into the restaurant in a Thermos. She has always had a bunch of oral motor issues!! This weekend all I did was chop it up with a fork and feed her. She was so proud of herself, and it felt great to be like a normal family for a change. Now, if we can get her arms working better, maybe she can feed herself one of these days!!! That will be a bragging post that I can't wait to share!!

St Louis Bound

We are headed back to the CP Center in 2 weeks. Since Logen's EEG came back positive with seizures, the neuro wants to see him. As of now, we've been given liquid valium and were told to to give it(in a suppository form) and call 911 if any seizure occuring lasted 5 minutes or longer.

Not sure if the laptop will make the trip with us, but i'll certainly be updating when we get home. We are suppose to be meeting with a SLP & an OT about the CONSTANT drooling. It's becoming an issue. It STINKS. He's almost 5 and I am afraid his class mates will notice the funky odor. That, and it's just not normal for a 5 y/o to drool like this. He has enough issues as it is. We've discussed botox, it's considered 'cosmetic' if done in the face. Insurance won't cover it- if he qualified for it in the arms, hands, legs, etc then they could use the remaining in his face and not bill it. However, he doesn't.

Thats whats up with us.


lol finally got my invite and I am so glad I can finally post here!!!

Nicholas is doing pretty good but the muscles in his legs are starting to get really tight and sore, this morning when he woke up he couldn't even bend his legs they were locked up so bad. I am still waiting to get the appointment to get his legs recasted for braces but no one has phoned me back, I swear as soon as I find out when their next clinic date is I'm just going to show up and pretend they gave me an appointment lmao think it'll work??? It really sucks because they only work one day a month and his other clinic hasn't even phoned me back yet so I can't even get an appointment there! If his school was open during the summer I know that they would have had them by now since their person comes in every week! Geeezzzzzz out of three places we can get braces we haven't been able to get into a single one of them, pathetic isn't it? He's spent all day in his Kid Kart or stroller because he's been too sore to move, it's really sad to see, he wanted in his walker so badly but once in it he couldn't even move it an inch! I'm going to try to heat gun his old ones to see if I can open the one up a bit so his foot will fit in, even if it doesn't work at least it was worth trying IMHO anyway.

Hope your all having a great week so far!


Monday, July 7, 2008

BBC meetup??

Hey everybody that's here... not sure who yet... I can't post on the OBBC still, so this is my lifeline to you guys...

Sheila and I were wondering who was still up to meeting up at the end of July?? We're looking at a beach meet up maybe, or elsewhere if that works for others.... maybe an overnight with or without kids??

Let us know!!

Ellen :)

Where Are You?