A day in the life...

Wow, that was the most negative thing I've ever read in my life. Why doesn't someone reel me in when I'm going down the wellbutrin path.

Today I got up around 6:45, I sewed my heart out to get a few orders, gifts and whatnot finished while my kids ate their breakfast. I swear that both of my children are going through growth spurts. With Manny its great! Maybe he'll grow out of 12 months cloths by the time he is two. Jake.. gosh.. Jake can be so funny. "Want celery, want oatmeal, want soup, want mac 'n cheese, lets cook mac 'n cheese, make cook cookies??" You get the stream of consciousness version. With Manny you just get a fussy baby that is only satisfied by eating. I have to get them OUT of the house, but then I have to pack a picnic. I don't want to even think about my grocery bill in 10 years.

But I digress... after sewing and making four breakfasts, (two for each child) "the poodle guy" showed up with his five dogs about 15 minutes before Lacy showed up to help me with the kids (bless you Lacy.). It took me two and a few to groom the five dogs and I basically marathoned it.. refused to touch my phones or check my email (left the iphone upstairs) until it was done... at eleven something I came upstairs.. sat a few minutes and rested at the computer. Manny had fallen asleep and as usual I felt guilty that Lacy was the person to put him down and not me or his Dad. I love my kids and wish I didn't feel so pulled in so many other directions and away from them sometimes.

I quickly departed to my sewing room where I finished two backpacks, brought them out, lint rollered them, took some quick BAD pictures of them to apologize about later and sent Lacy home after basically ignoring her complaints that she was sick because I didn't know what else to do.

I made myself some microwave noodles and a sliced avocado and the second I sat down with it the doorbell rang.. OH yes.. another dog.. I forgot. I took in the puppy after way-too-long-for-my-schedule-but-great-for-my-self-esteem discussion with the owner, who I adore but she invades my personal space something HORRIBLE. But hey, I'm used to that, and it was inevitable since I was wearing a very very happy baby on my back. I went back upstairs and ate about 1/3 of my noodles before I realized that both boys were just going to eat them for me, so I microwaved another noodle bowl to split between the two boys. I was drinking my tea when Jake brought me another noodle bowl. "Hungry.. YES PLEASE" he exclaimed. I started to wonder if someone was playing an april fools joke on me. The time was 12:20PM

I tied Manny to my back and had Jake go down the stairs with me so that I could start the dog. I washed the little gal, got her nice and almost dry, and put her in the ambient dryer to dry. I carried Jake up the stairs because he was hoping for a longer stay downstairs where he knows he can stim to his hearts content because Mommy is working. I changed diapers, sat down to eat my cold noodles and realized that I only had 40 minutes to finish the dog before pickup (oh.. and I had forgotten about the noon dog so I had planned to get to the post office by 2 PM to mail an "urgent" package and meet a friend at the playground). Jake walked into the room and said "I pooped." I changed him. I can do a final clip on a dog in 15 minutes.. so I ate my freakin noodles.

Dogs finished, kids dressed, we head to the post office and the park. Jake is so happy that he's at the park he can't stand it. Then April and Nick show up and he's even more happy. Jake loves Nick. Then Jake falls into a 4 inch deep water/mud puddle. He simply stands up.. begins to flap his arms wildly and robotic ally say "oh i wet, oh i wet.. oh oh ... i fell...i fell i fell dah mud puttle." He never cried. April and Nick were nice enough to secure Manny while I went to find Jake some hilariously mis-matched, too-small, ugly and out-of-season clothing to wear from my car. We stayed for another hour, but I had to get home to walk and water and dismiss the five poodles.

Other things happened.. gosh.. somewhere in there there was a Popsicle drama, some fabric laundry issues, label printing, a poor sick husband coming home (who at this point probably thinks "Oh dear lord woman, please just stop thinking, and if you MUST think.. please stop letting the thinking leak out of your mouth-hole"), I got a pedicure, and then the kids went to bed. The rest is a blur... I'm embracing the blur.

I'm not going to go into the whole "its hard to be a WAHM" diatribe, but I can surely confirm the feelings of guilt that many WAHMs and SAHMs have. You simply wish that you could focus on SOMETHING and do it right rather than feel like you are a "decent" mother, a "decent" wife, a "decent" business owner (and for some of us, a decent advocate and social therapist). Most of us know that we are brilliant strong women with the potential to do something amazing. However when pulled in a hundred directions, our brilliance is dimmed and we just become "OK" at a hundred different things. It is frustrating, devastating and a challenge to be overcome. I still have moments where I say "I'm gonna kick this world's ass, no matter what it throws at me." I'm looking for my strength. I'll find it.

An Update

Its been a month since I posted. My kids have managed to go without sickness for that entire month, save a few sniffles. During that month they have eaten us out of house and home, and between them and my two jobs, I'm absolutely nutty. Jake is talking more and more each day, and his comprehension is getting amazing. I can have him help me with things around the house and he seems to enjoy it. School seems to be doing him so much good, and the teachers are amazed at his recent ability to make up his own sentences (though a little wacky sometimes). At least its not "canned speech." I can't remember if I blogged about it before, but he will be entering an integrated program next year in the same building where he goes now. It will be 9 typical children and 7 special needs children, a regular teacher and a special ed teacher and two aids. He will get to ride the bus every day and will be at school from 8 until 1. I'm excited for him, though I will miss our mornings together. He is making progress, and I am hopeful for his future, though there are still things that he is very delayed or challenged in.

Manny has an appointment with Dr. Michaels tomorrow. It is his "18 month well-check" however it will actually be the first steps in the diagnostic process for Manny. Manny has had a month to recover from his illnesses and I do not like what I see at all. In a few months he has gone from "the edge of normal" to being even worse than Jake was at this age. At least Jake talked (labeled). Manny has two words that I know of: "GO!" which means "swing" and "bel" for belly. I worked hard with him to get him to point to body parts, and over that past two weeks he has lost that as well. He is giving very limited eye contact and can barely walk a few steps without falling. His muscle tone is just horrible. This regression has to be one of the most heartbreaking things that I've ever endured. He is slipping away from me and there's nothing I can do about it.

I am not holding up well at this point and it is putting strain on everything else that I am trying to do. I am driving my husband insane, and just feel like I am underwater most of the time. I am mourning a "normal" child. I guess with Jake it was always in my heart that he was different. With Manny I had hope, heck I just "knew" that he was going to be OK. That he was going to grow up and help us make sure Jake was OK. Now I feel like Manny's case is going to be much more severe and it is making me insane. Some nights I just want to run screaming into the hospital saying "You have to do a full body MRI! He has tumors on his EVERYTHING, I just KNOW it." Ever since the mention of NF1 I am constantly convinced that he has a brain tumor, a liver tumor, that he's going deaf, that he's going blind.... it just goes on and on and it never stops. At the risk of sounding like an insane person ("sounding like"?) I am going to bring these things up to the Doctor tomorrow. He may suggest genetic testing and other tests for him. All of these things cost money, and that puts even more strain on the family.

After tomorrow we will be headed to the music festival and staying for three days and having fun. I guess I am lucky in that we are pretty good at handling our children in new settings, so I'm really hoping that it will be a few days of escape for us.

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.

Manny's Developmental Profile Results

Click on picture to view larger.

"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 catch..so.. 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.

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.

Numb

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.