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

Research Study

When we discovered Graydon had a flat head, misshaped in a big way we started seeing specialists. I know I have mentioned it before but he was fitted for a helmet when he was 6 months old. He was to wear it for 4-6 months 23 hours a day. At our initial visit at Seattle Children's Hospital when our baby was just 3 months old the ARNP we saw said he had plagiocephaly and brachiocephaly. She initially thought he had torticollis and referred us to physical therapy for him immediately. It turns out that he did not have tort but had overall hypotonia. After the ARNP wrote the referral she asked if we would like to be part of a research study for children and infants with plagio and brachio. We agreed and signed up. We figured if nothing else they may figure out what is wrong with him and possibly give us more resources. He went to several visits over 3 years and had one MRI relating to the study. (He had another MRI later for medical reasons.) They would send us updates and so on but never really heard the results. I belong to a group on Facebook that is for people with hypotonia. It is a great support group. Many people from all over the globe sharing stories and advice. I wish I knew about this years ago instead of just a couple months. There is a mother there that was denied helmet therapy for her child and while I was looking for links for her to campaign to her insurance company to show its medically needed and not cosmetic I found a link from an article detailing the research study Graydon was in. He was one of the 472 babies in the study, obviously not part of the control group. I know initially we were told he was the first child with plagio that had a successful non sedated MRI. Thankfully it was clear and showed nothing wrong. All of his Bayley tests showed significant global delays. 6-12 months behind "normal" children. It was the urging of Dr. Brent Collett that made me push to have Graydon retested for speech delays, after the initial one showed he didn't need speech therapy. A copy of that Bayley test from a high ranking professional at an acclaimed children's hospital held merit when I waved it in front of the people who said my child didn't NEED speech therapy. They suddenly agreed he did. Anyhow...this is the link.

I am so glad to share and hopefully some good came from the study and it gives other parents more of an edge to fight for their children when professionals refuse to listen.

Another link to a similar story.

hostgator

Many changes, but everything is the same...

I was reading my blogs from last year. Wow has it been that long since MJ died?

Graydon had the procedure and we are maintaining his constipation problem with medication. So far hes not gotten as bad as he was the first 2 years of his life. Hes not potty trained yet. Everyone told us to hold off. He has had many more tests, an MRI, blood work and even had a genetic specialist. Think Dr. House but for genetics. No answers still. Some "maybe its this or that" but since there is nothing definitive I am not even going to google the maybes. I will just become more neurotic than I already am. And let me tell you, no one in my house wants that!

I still worry about this little man every day. He started daycare this year because we had no other options. The first week he got sick, and hes been sick with ear infections 7 times since. He still has fluid in his ears that cause him pain at least every other day. Well enough pain that he cries and complains. It is really his only complaint he ever has. Good news is we have a great doctor and hospital that agree he needs tubes. Bad news is that they are booked till July so we are having to wait it out till then. He may need some other things done but they will check then. Crossing fingers it all goes ok.

The daycare he is going to was mostly wonderful for my daughter. Its not been so good for Graydon. He keeps getting in trouble, he mimicks the bad kids. He doesn't have tantrums but gets excited very easily. I think the teachers dislike him because they don't understand him. Maybe its because I got another teacher in trouble a couple years ago for doing something bad to my daughters class? I don't know. The teachers have been pushing for us to move him from the first 2 weeks. Instead of making an effort to acquaint G to a daycare setting they expect him to conform to rules hes never had. Like sitting quietly in a circle without moving. The other children, well a couple of them, are unruly and bullying. They even had a state worker come in and asses it. The teachers tried to tell me that its Graydon. The state worker who I requested to speak with said that its too chaotic for Graydon and he doesn't get the attention that he needs. Talking to her made me feel much better. I know my kid is a wonderful caring child. He randomly hugs kids he meets. He hugged 4 today at Target. I wish the rest of the world was just as friendly. He brings smiles to everyone he meets. Well except the 2 teachers at the daycare too busy to notice him standing in a toilet.

The other good news is that he passed his latest speech assessments. He only has a mild delay according to 2 independent tests done just a few weeks apart. He still needs help though. Its obvious hes a little behind but they said its not an extreme concern. Well maybe for the ones doing the testing. I do worry about what will happen when he goes to kindergarten.

Eating issues...always a struggle. He still has a lot of things he won't eat. We focus on what he does it and keep those handy. Still no real fruits or veggies. Gerber meat sticks are great, they make one with carrots. I really need to learn to cook. Or be more creative at it. Maybe I can start hiding veggies better. So far he finds them or just refuses things I have hidden veggies in. It's like he knows. So confusing. Hes above zero percentile at least and maybe up to 8%. This is wonderful as long as he keeps going. I heard a pod cast on The Parent Experiment the other day. They talked about coconut oil being a miracle food. I plan to get some and give it to Graydon. Maybe even the milk. Can't hurt right? Dad may think I am nuts but I am willing to try it. Will report back later!

Failing...

Well not in my class, yet. I just might if I can't finish my work though. Graydon had never been to preschool, daycare or anything like it until February this year. I figured he would do well playing with his "fwends" and he did at first. But I think hes lost, too many kids. Even though its just 4-5 hours spent there. He started acting out and throwing things, or at least them mentioned it. I blew it off because hes not normally like that. I figured he was copying other kids. Graydon is very much into copying others. He is behind on his development in speech and motor skills but they have always said his cognitive level is on time. He thinks, figures things out, just cant communicate it with people who are not used to how he speaks.

So now hes is throwing things, just at daycare, on a consistent basis. Not sure what to do because hes not at all like this at home or anywhere else we go for that matter. He usually is trying to hug and kiss the girls he meets at appointments or in random public settings. Its so frustrating because the daycare had stripped him of his comfort items. The wouldnt allow him his blakey and binkie. Though I brought them daily in his bag. They finally relented on the blankey but only for nap time. What do I do? I have never had a problem with this. I would really love the feedback from others if possible. I plan to talk to his speech therapist today and her supervisor to see what they think. Help! I feel like I am failing as a mom.