Saturday, February 28, 2009

Sicky Babies

We haven't had much luck since Thanksgiving. Some or all of us have been sick in one way or the other pretty much since then. Jake is pretty resilient and gets sick but gets better fast, and is usually in high spirits even when he IS sick. Manny has been hit the hardest, and has not seen a 2 week period where he is not been really ill in four months.

Manny threw up once on Thursday and once on Friday. He has been otherwise OK, but has just slept a lot. Last night, after Manny was in bed, I got violently ill. Within an hour Jake was in the same boat, and Steve, who took care of EVERYTHING, thank the universe, was hit hard around 3 AM. Its been quite a 24 hours. The rest of us have recovered to some extent, while Manny still remains ill and can't keep much down. I worry about the little guy. I plan to take him to the doctor in the morning if he has not vastly improved, or to the ER tonight if he gets any worse.

I don't plan on grasping at straws too much with Manny like I did with Jake, however, you have to wonder if laying around with various stomach bugs and colds for almost four months straight has affected his development to some extent. You can't LEARN anything when you're just laying there. That being said I still get frustrated when people say "oh.. its probably just...." I've been down that road already. I also realized that, according to his weight checks at the doctor, that he has gained only 4 ounces in 3 months, and has probably lost that the last few days. During the almost 3 days where he felt OK he jumped forward again with his speech and interaction. This roller coaster that started with Jake and his developmental issues is simply killing me.

Whether or not I have to take him in for a sick appointment this weekend, I plan to make a 18 month check up appointment first thing next week so that I can discuss these things with the doctor. Steve says that his gut feeling is that Manny does have Neurofibromatosis, since all of his symptoms such as low muscle tone and poor development are consistent. There's really no "real" reason to come to that conclusion, but its hard not to think the worst sometimes.

Meanwhile, I need to work on getting my entire family healthy. I've tried probiotics, healthy foods, completely cutting out the icky stuff, and somehow we are still puny. Spring can't come soon enough.

Tuesday, February 24, 2009

Manny's Developmental Profile Results

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Monday, February 23, 2009

"Sometimes the lights are shining on me....

...Other times I can barely see."

I haven't mentioned Jake's horse riding lessons in a while. Recently he met a sweet Shetland pony rescue named Smokey. Its hard to say if Jake enjoys riding Smokey as much as he likes riding Red, but for a worried mom and a child with low tone and less-than-perfect balance, Smokey is the right size. More importantly, Smokey adores Jake, and seemed to from the start. Smokey has a shifty past, and was rescued initially and found to be neglected. He was rehabilitated by an individual before being brought to Storybook Farm and put up for adoption. I had started the whole horse-riding lesson endeavor with the intention of looking into adoption, and the time seemed right. Smokey is now part of our family.

Ironically, the day that I went to work out the adoption details with Crystal, Jake fell off of Smokey. He wasn't thrown at all, in fact, Jake went to slip off of Smokey's right side and Smokey moved quickly to try to correct Jake's seat and Jake fell hard off of Smokey's right side, landing hard on his back on the packed gravel. Luckily he was wearing a helmet. He was scared and cried, but recovered quickly, as Jake usually does. He probably won't get on Smokey (and definitely not until Friday when I plan to go to tractor supply and get a perfect fitting helmet) for a while, but we will be using our time at the farm to spend time with Smokey and make sure that he enjoys our visits and is easy to we'll bring him treats and take him for lead-walks around the farm.

It shouldn't be hard to make Smokey love us, as, like I said before, he already loves and has a huge interest in Jake. After Jake fell Smokey just couldn't keep his nose off of him, making sure that he was OK. It was just simply meant to be.

As a long-time dog handler, I am very interested in getting to know ponies a bit more. The groomer in me wants to work on his coat a little too *wink.*

A Manny update:
After the session with Cindy last week, where Cindy expressed, among her other concerns, that Manny seemed feverish, Manny got really really sick. By Thursday Steve wanted to take him to the doctor. It turns out that he had Herpangina the hand-mouth-foot disease virus. He has been very sick all week, and eventually broke out in a rash that warranted a call to the traige nurse. It turns out, he had both the HMF virus AND Roseola as well. Life kinda sucks when you realize that your child can have two childhood diseases at one time. Jake was a good big brother to his sick baby brother.

He has been feeling so much better the last 2 days, eating and not in so much pain. He has actually been talking a bit and happily immitating his father saying "Shit" today was, in some way, a "good" sign. I haven't managed to move back to the "hopeful" state, but I am really really trying.

Tomorrow we have a fun-filled day planned with OT early in the morning followed by a trip to the aquarium with a friend we haven't seen in ages. Should be fun after a full week of sicky babies and worry.

Tuesday, February 17, 2009

OT today.

I suppose I may end up changing the name of this blog to "our sons" or "Manny and Jake."

Manny went with us to OT today since Lacy has the flu and had to cancel. I was actually hoping that he would and planning for it and threw some sort of weird tantrum when Steve said that he would watch Manny while he took Jake. I'm really just completely out of sorts the past few days and probably very hard to talk to for just about anyone, not to mention hard to live with for my family.

Jake has gone from acting amazingly "normal" for several months to being the stimming, withdrawn child that I knew before the holidays. Many of the behaviors that I thought had disappeared have returned, which has again seemed to render OT sessions useless as being "for him" and more of a counseling and brainstorming session for Cindy and I. Because of this (well, I was probably going to do it anyway) I mentioned Manny's lack of speech to Cindy. She wanted to see him.

Her assessment was a summary of what I've been feeling. His low tone and lack of physical skills are beginning to border on "delayed." He does not stay "with you" on interactions as long as you like, and the screeching and screaming during interactions does seem to be a response to frustration at not being able to speak in any basic manner. The loss of speech is definitely a red flag, as is some of his behaviors such as putting his hand on my hand and manipulating it in order to get me to perform a task. She seems just as concerned as I do, or at least thats what I got, and said that there isn't much that we can do about it at this point except to file away this info in case we need it later and try to do activities to get him back. She gave me a Developmental profile to fill out that she will score. She highly suggested that Steve and I fill it out together as well. The particular profile that she gave me, when scored, will give her information and activities to print out for me.

I honestly just don't know how I feel right now. As I type I just shoved the Dev. profile under some other things on my desk so that I can't see it because at this moment its physically painful to look at. I want to say something positive like "we'll just take it one day at a time" but I'm not feeling that right now. I could be brutally honest, but I'm even too tired to do that.

Sunday, February 15, 2009


I have been avoiding making this post for the past few days simply because I am having a lot of trouble voicing what I want to say about it. I am dealing with the fear/realization/gut feeling that Manny has suddenly regressed. It started with him having a few extremely fussy days that seemed to be attributed to his eye teeth bothering him something horrible complete with a low-grade fever. He was impossible for the babysitter to handle, and frankly, me too. But well, 17 months old is a hard time for any toddler.

Only in the last 2 days or so have I realized that Manny has lost all of the limited speech that he had. He has at one time or another said "Dada, Mama, dog, tickle tickle, uh oh" and a few others I can't think of right now. I can't remember the last time in the past little while he has said anything, and for the past two days have been unable to get him to say anything save "GOoooooo" when he refers to the swing.

Also, he has become obsessed with the wii and constantly brings the remote to me wanting me to play it. He will sit forever and watch and pitch a terrible tantrum if I stop. It is one of the very few things that he will do lately that doesn't involve me carrying him around. There are a few other activities that he does that are odd, but its not worth explaining right now. I'm watching him closely and that sinking feeling just won't go away.

Basically he has been tantrumey and impossible to engage or console for very long for about a week and a half now and his muscle tone doesn't seem to be improving at all, if not that it is slightly worse, but its the loss of speech that has me absolutely reeling. I am just not prepared to work on getting everyone on board, yet again, and starting the whole process... starting with getting my family and friends to listen to me (which I don't feel like I've accomplished yet with Jake). What I have mentioned is met with even more denial or just is just plain unacknowledged. I am just absolutely terrified and I don't know how to process it. I only hope that I am VERY very very wrong about this.