Waiting

Okay so I called to get the update on Tu Tu bun's test. He had a Chromosone Micro Array analysis. Basically it is a more indepth look at his genes. It will detect deletions and duplications on a micro level. So far our genetic counselor said that there are no results. Of course she will be leaving today for vacation until June 23. AHHHHH!!

She told me that if I can't wait to call back to one of her co workers. Thankfully they understand that we want to know ASAP. He also had blood drawn at the same time for a CK or CPK. Which basically shows muscle damage. Alot of times children like Tu Tu will have an elevated level. Tu Tu has had two in the past, but now it is normal. This is great because it suggests his muscles are not deteriorating.

I also met another one of Tu Tus therepists patients who looks like him. Weird huh? But, he too was negative for a FISH test. His mom was not there, but she asked if she could give her my information. OF COURSE!! Like Tu Tu buns he lacks speech and has other global developmental delays with no reason. He has the same physical appearance in his face - ears, underneath eyes, nose and mouth.

UPDATE- Here are pics from our fun in the sun after school got out. Tu - Tu is sucking on the paintbrush that was used to paint the fence--with water.





This is a pic of the water toys in the yard. The splash ball is in the rear of the pic.

Finally, a picture of worn out Tu Tu buns ready to go inside. He is so sleepy here.

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.