Friday, June 15, 2012

BBQ, Big Boy Beds, and Doctors Visits

This week has been full of activities, first we had a wonderful time at a friend house swimming and enjoying good company on Monday. Here are a few shots from that, Ayiana thoroughly enjoyed swimming and is so excited to start swimming lessons in 2 weeks!

Ayiana enjoying the water
Ayiana the clown, she is so silly!

Liam would not go into the water until the bubbles in the spa kicked in....then he was all for it, go figure! Most people WANT to see the bottom of the water they are getting into, but not him!

I love these people!

Liam's class had a small field trip for lunch at Burger King on Wednesday, he enjoyed himself there. It was really cute inside, they have little tables that fit the kids perfectly I had know idea!

Liam loved his field trip!

Last night I decided it was time to take down the safety rail from Liam's bed so he can get out easier. He is in a toddler bed and has half railing on the side anyways I just had him double protected but he couldn't get on/off his own bed with it... WHAT WAS I THINKING lol, okay I know I was thinking more independence for him and that's certainly what I got! At 12:30 midnight he was being loud I went in asked if he wanted some milk, which he did so I went to the kitchen to retrieve it and he instantly was out in the hallway, taking his diaper off (also a new skill this month lol) and then he turned and ran (also another skill he is getting proficient at) and took off to Ayiana's room. I found his nude butt standing in front of her nightlight. She woke with a smile, she had said she knew he was going to "escape" tonight lol. I took him back to bed and closed his door. This morning when I went in, this is where I found him.....

His favorite Yellow Blankie is even on the rug with him, silly boy! 

Good thing I started this idea in summer, now if he learns to open doors I think the baby gate is going to be necessary at his bed room door as well because he also learned last week how to crawl out the doggies door, so he could end up outside at night if we aren't careful!

Thursday was Liam's last day of school as the programs both ran in the morning today and he had a doctors appointment. I can say that I really like our genetics doctor, he is down to earth and gives the best referrals! He will refer us to the cleft palate team to check more into Liam's sub mucous cleft palate which was found in February, he said they may or may not see us since we have an ENT, but he would try! Then he is also giving us a referral to a Developmental Peditrician. This is the BIG one, that is awesome of him to do because this doctor will be able to diagnosis Liam with things for EDUCATIONAL needs. I have and continue to believe that Liam likely has Autism on top of all of his medical needs and genetic changes. Thus far we have had many doctors, teachers, and specialist give us mixed ideas on that. But what I know about Liam is that he does have a lot of behaviors consist with Autism, he actually spin in circles the whole time the genetics doctor and I spoke (about 15 minutes) and rocks in class if he is not being stimulated by something (toys, songs etc). So a trip to the Developmental Peditrician (DP) is a very good referral and I am hopeful will help us access more services for him. I should also note that a new DP is coming in the end of July and I am so hopeful we get her, as the current one is very aged and does not understand all the current standards as the new one does. The genetics doctor left it up to me regarding more chromosomal testing or not, there is another test similar to one previously done but it is even more precise, I said yes. My take on this is that as Liam's mom I am going to take every opportunity to help him developmentally, sometimes a test will reveal a change that can be helped along, for example one syndrome I have researched leads a body to build up cooper levels, so those individuals are monitored and obviously do not drink water from cooper pipes, or cook with cooper pans.... so I think if I can help Liam in anyway by finding information then that is important.   And since we already have done and found some information previously this may add to it or define it more then before, including genes in the region. The other test that the doctor will run for us is Cholesterol levels, this is not something generally looked at for children; however, Thomas and I both have had abnormally low levels (like combined low/high under 80) and there are some syndromes which this creates developmental problems with. It is also interesting to note that our liver creates 70% of our bodies cholesterol, we only eat up to 30% of our total, so it is possible that the Gallstones could be linked to something in his Liver function too. The doctor is asking our insurance for approval of the genetics test and then we will go in with Liam fasting to do that and a cholesterol test.

After our genetics appointment, Liam had to have a blood draw today for Liver function, this is from his Gastrointestinal Doctors request.... thank goodness the gal who did the draw was GOOD, first stick! WOO HOO our usual is 3 times or so :( but today's was pretty good, here is Liam with his little sticker on, dinosaur bandage, and toy Zebra in hand from the doctors office.... we go back on Monday for his HIDA scan, wish us luck!
Ready to get on that elevator and go home!

PS: My husband says I should write this in word for grammar and spell check, yes I am aware that my spelling and grammar is a bit off frequently...but seriously after typing all that I do not have time every time to do it haha, case in point Liam is now touching all over the key board and mouse while laughing at me! So I will say it like he does "all done"