Hypotonia - a vague diagnosis

So tu-tu buns is becoming such a little cutie but so much more typical of a two year old. So, when someone says wow you have lost some weight, I really attribute a lot of it from running after tu-tu buns. I guess when you have not gotten to run and have freedom you just have this need to run, explore and play. Its great but slightly frustrating when you constantly have to stop and run after them.

I have found a very impressive book given to me by tu-tu's OT- its the Out of Sync Child. Its great and I really wish I could have gotten it sooner. Amazing how many people have some degree of sensory issues. After reading it I feel we all have a little. Its how it affects us or puts limitations on normal functions that it needs to be addressed. I am really thankful to our wonderful therepists now.

Every day it seems I meet people who have a child with no known diagnosis or similar issues that we went through that makes me want to blog and get it out. Its hard when you don't know or you don't know of someone else who went through it. I find there are times I say If only I knew that...

First, the one thing I would have changed from the beginning...be very adament in getting one primary care doctor. If we could have had some continuity in care then they could have caught this early on instead of some random doctors thinking it was cystic fibrosis. If it was going to be an issue of the on post doctor rule - I would have fought tooth and nail to be referred off post due to our drs constantly changing due to deployments. Write to hospital command staff and have my hubby's command staff involved. I was too patient.

floppy baby

Its funny how we parents make up little names or sounds. Maybe that's just me, but when you talk to your kids you start to think up little names and for us its was floppy baby. That is until we found out that our baby should not be floppy.

Tu tu buns is now a much better name and it totally suits him. In the beginning I remember thinking why do I need help bathing him and helping keep his head up in the car seat. I do know that all kiddos are different and I really thought nothing about it. Neither did the drs at the hospital either. But then again he saw a different dr each time due to the whole military thing..(a post for later because I do think there are excellent drs just dealing with a difficult system) so nobody else seemed to make a mention about it. He was happy, made eye contact and really was a calm baby that did not like to cry.

But, now looking back he was classic hypotonia - low muscle tone. First signs are floppy baby!! Now after having different therapists and doctors depending on who you talk to Tu tu buns is not that bad!! But it has taken 1 and 1/2 years of extensive pt, ot and speech. It is getting better and he is catching up developmentally with other 2 and 1/2 year olds.

I really want people to know how important it is for therepy. I wish I spent more time in the beginning pushing for that versus trying to find out what it was. Yes, there were a few times they needed to find out, but the other diagnoses would only give a name to what he has and the treatment is what we are doing. Eventually yes it will be interesting to find out if this is a gene or lack of oxygen, but over all I know now its more important for T to have therapy because the first 6 years are crucial for brain development. My heart truly believes that Tu tu buns is getting better by working hard.

My other thing is that alot of what tu tu does is not what a normal baby book teaches but random outside of the box things. Things that others laugh at and I have, too. But, it works.

Chuchalana is a name I started giving to my little girl when I would notice her acting sassy or wanting to be a messy girl..dont know why I call it that, but a funny note is there was a girl growing up who was a meanie. and she helped alittle with this name...

Pernounced Choo-cha- La- na

This morning I awoke to ice outside. I still want snow. Just fall from the sky and its okay if it does not stick. The babies would love it. But, do try to get off the ground so they don't miss school. Haha

new year

I love the start of the new year, but dread the idea of resolutions. I feel like I can never follow through...so I am really going to keep goals that are attainable and go with something I feel I can keep up with.

I am terrible with correspondence..thank yous, birthdays, anniversaries...I want this to be the year I dont forget and arrive on time...

I need to complete a family album and organize what I have ... I definitly need some type of game plan or else I will always be one more year behind.

Then the last one is to read..just a book a month. I really have let this one slip and it must not be another self help book.