I just don't know...

It's really hard to talk about sometimes. I wonder if there isn't more I should be doing? I have finally had to admit (to myself) that G is not going to be ready for mainstream school next fall. Not only is he super small, he just doesn't understand things other kids do. I am so tired of fighting teachers and doctors who's response is mostly "he'll be fine". You really cannot expect my child to wash his hands and get in a line without a reminder. He can't color or write his name. He doesn't even want to try because his little flexible hands can't maneuver pens and such. Then there is the whole can't smell issue...how do we cope with this? How do we teach him that other people can smell things and he never will? How do we teach other people that he has no idea what a flower smells like, or home made cookies? How did he bond to us as an infant without smelling? Did it happen later? Was he 1 or 2? Did he fall and hit his head to cause this? Was he born that way? It's really hard not to just cry for him. How can I fix this? I am trying so hard to be strong and fix everything that comes up to make life normal for him but how can I make this better? Could be worse, it can always be worse. What if there is a fire? He can't smell the smoke. Maybe we should avoid a home with gas in it, he could never spot a gas leak. How as a mom can I make this better?

He got sick over the weekend. Not sick sick just noticed he lost his appetite, well what he has of one. He went almost 24 hours without urinating. After a trip to urgent care and a rash and ER visit later we have nothing. I am hoping it was indeed nothing. Still can't get him to eat much. Do I sit on him just to shove a few bites of turkey in his mouth? I hate when people judge that you are a horrible parent based on what you feed your kid. I find it awesome you can get your kid to eat some tofu and organic juice. Mine won't even drink juice or eat vegetables. Of course now knowing he has anosmia and can't smell anything makes more sense as to why he won't eat things that are pretty normal for even a picky child. But again, how do I fix this? This could be another reason for FTT but why? Why? I just want some answers. I just want a reason. Something to point us in the right direction, a reason that will allow him some extra attention in school. I worry now even more. But I am just happy that he is such an awesome kid. Even when he should be feeling pain and discomfort he will smile and appreciate the music in his heart. I just want to make things easier for him. Just not sure how...

Medical Staff: please don't play telephone, it's a horrible game.

At my wits end with medical people. Please, please listen to the parents. At least acknowledge that we know our children. After all we do live with them. I am so frustrated with no explanations...just do this and call us later. Really? Yeah, ok and I should trust you why?

I don't know what to do but I regret this facility and the decision to come here.

They are so focused on the constipation and not WHAT is making him constipated. I feel like no matter what I say/explain or otherwise they think this is a new problem and ugh, whatever. I thought of writing a letter to them since the person in charge keeps sending messages through other nurses.

Dear ARNP,

We came to your facility looking for answers to a life long problem our child has. Since birth he has been constipated. After 2 years of making appointments, visiting various urgent care clinics multiple, more than 15 different times in less than 2 years asking what is wrong only to get blown off, they did an x-ray in the middle of the night at an ER. At all these doctor visits, pediatric specialists, urgent care doctors and nurses they all felt his stomach and told us there is no way he was constipated. We just worried too much, or thinking about it too much. Well finally we had an x-ray that said we were right ALL along and oh yeah we don't know what to do cause its so bad. So after an ambulance ride to Children's we were given instructions for oral clean out since an enema would rip his intestines apart. After a month or so of this to no avail and he was suffering stomach pain and vomiting we went to the ER again. This time I was blown off stating he is simply 2 and having tantrums. Tantrums from a dead sleep? He does not, or did not ever have tantrums. I know my child. After telling this doctor I don't accept her answer she conceded to do another x-ray to prove that he is all better from the oral clean out. She ate her words and was apologetic when she saw how impacted he was. Thankfully the wonderful Neurodevelopmental staff stepped in and rescued him by having him admitted for a clean-out through the stomach. 24 hours of intense clean out and the x-ray after showed he was finally cleaned. We were instructed to give him Mirilax every day and told from now on he will be fine.

That was 2 years ago. He still is not fine.

Our visit to you was because he isn't getting better and a teacher at his school spoke highly of the department. We were hoping for answers. We were shocked to find out he is still highly impacted. For a child that eats hardly anything, just enough to survive this cannot be good. We totally understand and complied with your instructions. After numourous back and forth calls with your people and a second xray 2 weeks later we are still almost where we were. If you have a plan it would be nice to know that. How long can he go with poop that runs like urine? When I brought up to your people that he is barely eating you say its because hes constipated...but when I say he ate more before we started this treatment I am treated like I don't know my own child. When I say he wont drink something, I am not saying that just to hear myself talk. When I say that its liquid and there is nothing solid left, please hear me. I know my child. And whey your people say that you will be able to "feel his abdomen" to see if he is still constipated I have 20 other people that said that too in his first 2 years of life. Good luck with that. I just want answers or at least someone to throw out some things, do some more tests. This has now gone on for 4 years, it is not a new issue. Please hear me when I tell you this. I haven't gone to medical school but one thing I do know, is that I KNOW MY CHILD.

Listen to parents.

Sincerely,
Me

Summing it up.

I stole this from a post on Facebook and modified it a little bit.

I am the child that looks healthy and fine,I was born with ten fingers and ten toes and a cute button nose! But something is different with me,and nobody really knows what this could be, and it isn't always easy for people to see. I am the child who struggles with words when I talk, who sometimes gets out of breath and in pain when I walk. (and then I begin to cough)

I'm not lazy, I'd do more if I could and I try with all my might to be like everyone else! I am the child who dreads sudden noise,it hurts my ears....making me cry and along come the tears.

I am not having tantrums but my stomach hurts really bad, that makes my family really really sad.

I am the child who tantrums and freaks,over things that seem petty and trite,lost in my own anger and fright. Perhaps there's a reason I'm made this way...some message I'm sent to share...For I am a child who needs to be loved and not misunderstood.I am different...but I just look like you.

+++++++++++++++++++++++++++++++++++++++++++++++++

All children have special needs, some are just different than others.

Labels are for underwear, not for children.

Can't Smell

This week I realized that it is unlikely that my youngest can smell...anything. (Even though we can all certainly smell him!) It dawned on me when I was reading about someone else's child being sensitive to smell and I realized G has never told us anything stinks or smells good. His vision is super strong, he can see things very far away that no one else even notices. Exact opposite of myself and his older brother and sister who can't see far without glasses. His hearing is also super sensitive. He can't stand loud noises and will unplug the vacuum if you pause to move things out of the way. Thankfully he doesn't do this while the vacuum is running...but he will run into the other room. I remember earlier this year we were at the store and they had fresh flowers and I was trying to get him to smell them and when he did he seemed to blow air out not in. He now does that when I ask him to smell other things. I hadn't thought to ask him about smells again until recently.

The other night after I realized this I did various smells on napkins or right from the bottle since he cannot read. Garlic salt, onion powder, vinegar, vanilla, lemon, butternut, cinnamon, nail polish remover, rubbing alcohol. None of them had any impact. He smelled the vinegar twice until his older brother said ewe nasty so then he started saying this as well. He smelled nail polish remover right from the bottle, nose as close as he could get and no reaction. He tried 3 times. Is he just good at ignoring smells or does he just not smell anything? Hes still not great at communicating and as much as I have tried to describe smelling with his nose I don't think he understands. When I would ask him what things smelled like he would say basketball game, doctor appointment and once pop tart. Not cookie, pancake, or medicine like one would expect.

This really has me wondering about the connection to or through hypotonia and his failure to thrive (FTT) issue. If he really and truly has no sense of smell this could be part of the reason he avoids certain foods. I have been trying to search for what things taste like to a person without ability to smell but have only read a few things. One he won't drink anything but milk, or vanilla milk. Juice he has always refused. This could be because without smell the juice may just taste acidic and not sweet like everyone else tastes. This may be the same case for fruits and veggies. It may be the texture bothers him because the taste is off? Not sure but would make a lot of sense...pun intended.

I am going to be trying to get him to smell things for the next couple weeks, although he is already annoyed with me. If he cannot smell I must seem insane to him, always sticking something in his face. Hope I don't give him a complex. I have asked around and other moms have told me their kids don't seem to smell anything either. Then again they probably aren't crazy like me and shoving stuff in their kids faces saying whats this smell like?

I don't think there is anything to be done to fix it if he doesn't smell but it may be a clue to find out what he has or what is wrong with him. He has a few upcoming appointments, ENT (Which works out perfect for questions and testing), genetics (may help them find a diagnosis) and before those appointments we have an appointment with an encopresis clinic specialist. Not sure if that is their forte, wrong end of the body but won't hurt to mention it?

Like always onward and forward to find answers.

I R Suck. Update and Update.

Seriously the blog thing has not been happening like I would like. I have lots to say but really not sat down to write it out. Here is the mini update for the year.
Finished college in June just 2 days before my youngest turned 4. (Where did that time go?) I got a degree and 2 certificates. Of course I didn't have to worry about finding a job, because I always had one. One I might add that I am very grateful for. Everyone gets along, usually. They understand needs to leave for medical appointments for my child with hypotonia and other medical issues, specialists and ongoing speech therapy. But it is good to be done. I *thought* I would have a ton more time for stuff like blogging, and ebay...HAH! Yeah no...not sure how I coped before with homework and everything school, work and family.

Moving on...G turned 4. He is doing pretty well progressing with his delays. Still not on the level of other kids his age but not too noticeable to others that meet him. Potty training is the big frustration now. He can pee every time, usually. But pooh is another story. He freaks out, tells me he doesn't know how, runs, hides...UGH! It is hard to tell whether he is internally damaged (Thanks to the wonderful doctors that wouldn't listen) or just fearful, or maybe a little of both. We hope that he makes progress before next fall when he is supposed to start kindergarten.

KC did another summer at theater camp (maybe that is where my time went?). She LOVED it. She even had a lead role with a singing solo. I certainly would love to get her some lessons and maybe get her involved in more theater stuff. It costs money which is scarce these days thank to a certain person that refuses to help with things that...well never mind. Tay spent the summer at my parents working as a laborer. He also helped other family members out and earned some cash. It was good for him. He turns 18 in a few weeks. CRAZY. I am so not old enough for him to be my kid. He has a lot to do this year. He needs to pick a college, we need to do some senior pictures. He has some super hard classes, calculus...physics. ACK! KC is taking algebra in 6th grade...I am not smart enough to help with homework anymore.

I also came to a realization that maybe I knew but never really sat down to ponder. My oldest will be graduating from high school on June 13. The day before his baby brother turns 5, yes FIVE! This means one graduates and another begins. HOLY F()
Speaking of the above mentioned grandmother, we also lost her this year as she left to join my grandfather. She had a broken heard for the last 4-5 yrs. My mother, bless her heart, took care of her until the day she died. Spending nights with her at home and even in the hospital till she took her final breath. There is another story to this I will tell later.

The rest of the year will be busy too. My son turns 18, my daughter will be 12 in a couple months, then Christmas....oh my.

But for now I am going to sign off. More to come!

A gift...Merry Christmas

Now that school is done for a month I plan to do some cooking/baking. When I was in Atlanta in August we went to a restaurant that was awesome. They had real southern food to die for, or to die from if you eat too much. They had this pudding like substance and to my surprise it was Sweet Potatoes. One of our dealers said its a staple come Christmas time and later emailed me his recipe. So I am going to share it for all those brave enough to try. Honestly I have never bought a sweet potato in my entire life so this will be an experience for me as well. (If I am brave enough to try it) Please let me know how it works for you if you do try it and if you make it already any advice would be awesome. Here you go...

3 - cups mashed sweet potatoes

1/2 - cup sugar

1/2 - teaspoon salt

2 - beaten eggs

1/2 - stick margarine

1/2 - cup milk (evaporated makes a richer taste)

1 - teaspoon vanilla

4 - large sweet potatoes cooked measures out to be approx. 3 cups of mashed potatoes.

Whip cooked sweet potatoes with electric mixer until fluffy mix in remaining ingredients put into casserole dish (spray with Pam prior) & bake at 350 degrees for approx. 30 minutes until thickens.

Remove from oven & add your toppings.



Topping:

1 - cup brown sugar

1 - cup chopped pecans (I like to keep some of the pecan whole)

1/3 - cup melted margarine

1/3 - cup flour


Blend these ingredients well & spread evenly on top of casserole & bake another 30 - 45 minutes to form a crusty top.

Test by inserting knife, if knife comes out clean the casserole is done.