Remembering the Postives

So I could talk about loads of negative things that have happened over the last few days, mainly comments and school stuff but I'd rather share the positives....perhaps it will cheer us all up, or at least add a smile to someone's face today. Liam had gymnastics again this morning, he did fairly well, my "how sweet" moment came when the children where sitting in a line taking turns onto the trampoline and after their turn they where to select the next child to go. Well after the first little girl went, I figured it might be a while for Liam to be chosen. He does not yet sit still and wait patiently although I was singing "Monkey's Jumping on the Bed" and that soothed him enough to not have screaming occur or what looks like me wrestling a cat into a bath. But, much to my surprise the little angel picked him to be second!  Then on the way out the gym door, a young man who had Down Syndrome was cleaning, he had saw us on the floor earlier and when we went by him, he stopped Liam and asked for a "high 5". Usually Liam takes a while to give one, its like he has to gear up to get his hands to coordinate the movement, but this time he did it quite quickly and "low 5's" where given as well. I said to say "bye bye friend" and we left to the door, I heard the young man exclaim as we got to them "Man I love my job". I thought that was super nice to hear, that's truly what everyone wants (especially mama's for their children!) and then for him to be happy because he gets to give little ones high 5's just warmed my heart. Oh a lighter note, Liam had only been taking showers for the last couple months. I don't know what ever happened where he did not really like baths anymore but as soon as the water would shut off he would immediately want out. As of last week, we are back to being okay playing and splashing in the tub, woo hoo, mom gets to shower by herself a little more often! Well tonight Liam and Ayiana where in the bath and I was checking on them in-and-out while doing dishes... Ayiana yelled to say Liam had pulled his ear plugs out so I went back in and she said "and they have some sort of yucky green on them" .... sigh, yep those green balls aren't play toys! I had needed to clean the bath anyhow so guess what, that got done today too haha! Liam pooped again when I got him out but it was a solid turd on the floor and he DID NOT play with it... there's a second WOO HOO, given past poop history, I consider that another positive for what otherwise would be considered a shitty day!

Belly Laying

So sometimes Liam lays on his belly suddenly and stiffens his legs back with his toes pointed, I mean his legs are way stiff. Today it final hit me why he does this, and it kind of stings as a mom to finally figure something like this out. He has done this maneuver for well over a year and we just chalked it to him calming himself or making his stomach feel better but it started to really hit me last week. We went to my parents as usual on Saturday and instead of giving my dad a hug he layed in this position next to his chair, I asked Liam if he was upset at Grandpa for coming over last week to our house and leaving....he looked back at me and GlARED with a very "you've got that right look" on his face. Then got up and proceeded to walk to far for my dad to reach him but with a huge very teasing smiling as Grandpa begged, finally he dove in for his hugs. Okay I know he was mad that my dad had left that night but that was a Tuesday and he kept the grudge! I did not think much about it until today. We went to a baby shower at my cousins house, he was busy playing when the host was sharing a few words with the guests. At that moment he tried to pick up a container of cars, lost his balance and all of them spread loudly over the wood floor. I got up to try to get him out of their but was told by a few people, it's okay. Of course I bumped the coffee table in doing that and knocked over all the mini picture frames on the table as party favors....guess I know where he got the clutsiness from....anyhow he layed on his belly. After we were done I went up to him rubbed his back and said it was okay that we knew it was an accident and to keep playing. And unlike his usual contine in the position he did get up and continue playing. It has bothered me all day since, he is doing the belly laying for more then just sensory "calming" reasons.... I thought hard about when he did this in the past week and figured out he does this frequently when we talk about him too, someone will ask me how he is doing and typically this belly laying is what he does! Yes, I do believe this upsets/embaresses him. I have always tried to be sensitive but I think has to go to a whole new level now, like not taking about him in front of him at all! As for our family and friends please remember this, Liam is very aware and even if he can not talk, and seems to "not be listening you"...he is and he gets embarrassed just like any other child he just has no other way to show it. Or sometimes he is upset at your for a reason, think hard enough and we will figure out together!

Gymnastics!

Four monts ago I put Liam on a wait list for a mommy me gym class at Break The Barriers. Yesterday we got a call that there was a opening, he started this morning. Other then having to wait his turn, which he does with very little to no patience he really enjoyed it...it is so going to be a work out for me to, he still requires much help to get in required positions so I walked out sweating lol, oh well I have needed to excersize more anyhow, now it's a forced matter :) Ayiana was very happy when I picked her up to, it was a 2 visit day to the class treasure box so that means she had super duper good behavior in class. She was also very happy to be wearing her new Minnie shirt. Right before Liam was born I had bought her this little outfit and the Minnie shirt sang, when she outgrew it I donated it not thinking much of it...and 3 years later she was still telling us how much she missed her shirt....so found 1 shirt that had mickie on it but had the same sound button, we ordered that shirt (which happens to fit Liam). When it came in I removed the singing button square and sewed it on a bigger sized Minnie shirt...she could not be happier, I never imagined a 5 year old mourning a shirt but I real think she was, I am guessing it may have been more intense then other things because she wore that so many times when Liam was a newborn and we where stuggling with doctors appointments, surgery etc with him...I think for whatever reason it brings her comfort. Today she took a nap, this is an extremely rare thing for her to and at that slept through every noise...including the leaf blower right outside the livingroom window, I guess maybe she just needed her shirt back :)

Sibling Love

At dinner tonight Ayiana told Thomas and I that she was glad she was a big sister. She said that she thought life would be less exciting without having Liam, especially when we are both busy because she can always play with him...unless he is in school lol. At church Liam got really upset when Ayiana went to her room and I went to take him to the nursery, so I took him to her room for the older kids and stayed with him...this time he did really well. We had tried this 2 previous times and he did not sit well, today he did better. With the exception at story time, during that time when I did the "Shh" (finger at the mouth) he mocked me by blowing out his nose and then thought it was a game to take my finger and put it to my lips and want me to make the sound.... thankfully this was still quiet enough for the other children to hear their story and be overly distracting (but really hard for me not to laugh at as well!). I was happy to see that whatever is happening for him to be better at school also carried over to Sunday School too! I caught a picture of Ayiana and Liam this morning, Ayiana had came into my room said Liam was awake and took off to his room, when I went in I found her in his bed with him.... I think that made his morning, what do you think?

On a Roll

So Liam had another good day at school, yey! I'm hopeful it isn't just because of the rain, perhaps he really does not mind being inside a classroom in the rain (he loves being outside but knows he can not go out in the rain!) I guess we will see when it gets sunny next week if we have finally met a good place for school or not :-) When we got home Liam was wanting to sign and do things like a mad man so that was nice as well, of course after reading his "Fire Truck" book 4 times it does get exhausting; however, I'll take it! When dinner time came I asked if he wanted a "roll." He started smacked his mouth and touching his finger to his lips, so that was a yes. I handed it to him, what did he do? Smooched it and "rolled" it up and down his tray.... hahahaha, in his credit he did take bites of it as he was doing this but I guess by definition since that was a "roll" it needed to be "rolled"; maybe next time I'll ask if he wants bread instead!  Since its Friday and I like pictures, I'm posting a few from this weeks activities to enjoy!

Straight backs and point those toes, both things Ayiana did not do when she started in January, she's doing really well progressing in dance class!

Pretzel Ayiana in Dance class Monday, so flexible!

Our little star! She kept zipping by the window with it like a magic wand and saying "zap" or "bipity bobity boo"  lol 

I asked him to look at the camera and this time he actually did! YEY!!! I worked for a while to get all those pieces to loop together but two bridges and a few cross connections and all pieces where used and made full loops!

Playing with his new toy the Easter Bunny bought, its the neatest thing, you turn on the middle circle and the rest you move around into place and they spin. A good toy for teaching about interlocking gears. Ayiana has also told me several times that it is a "really cool" toy! 

Will it continue?

So today, nearly three months into starting preschool we finally had no crying! We walked from the car to the room, Liam basically throwing his backpack off and me stripping his jacket as he walked away and he went straight to a table with animals that a group of his classmates was at and NEVER looked back. When I went to pick him up everyone told me how exceptionally happy he was today, including his speech teacher who was working with one of his friends during snack time. So I really really hope that this trend continues, for everyone's sake it was easier and he stayed happier the whole day. Of course when we got home he got cranky over a toy Ayiana had and then walked up to me while I was cooking dinner and when I told him I could not play right now he bit me (thankfully not hard) on the leg...making for a timeout for him but that is pretty normal behavior for a kiddo developmentally at a 2 year old level. He did make me laugh when I gave him his nightly med tonight though, when I told him it was time to take it he said "jus a mim" got up from sitting on the floor and then said "now open wide" lol I never say that when I give it to him! But I was surprised by two sentences back-to-back...also a trend I am hoping continues! The only difference between today and another was that the whole morning we where home and working on different skills, more than typical, guess I need to rethink my aron running to only when he is in school or after if he is going to do that much better, perhaps being my aron running buddy is too stressful for him!

OAV Syndrome

Back in November I met a mom on babycenter.com who happened to pop up on a board I help moderate and her son had the exact duplication Liam and I share. Given I have researched this area on the 18th chromosome for over 2 years and had NEVER found a report or matching family I was very interested in connecting with her. We have been in contact ever since, I wish we lived closer actually, I think we have so much in common it would be nice to be able to meet and chat in person. Frankly, the similarities we shared during a three hour phone conversation where amazing!  Anyhow, when I learned about her son helped my research to be more guided in a new direction and I am so thankful! Her son has something called Goldenhar Syndrome otherwise known as OAV syndrome. Goldenhar Syndrome is on the more serious side of OAV, and includes a large change to at least one ear (often times it is missing). But, OAV is a broad syndrome which can show very slight changes, sometimes just a small skin tag by the ear.  Usually there is know known cause for OAV; however, after finding our new friends online and researching....I believe in ours that there is a genetic link (the duplication on chromosome 18...if your reading this and lost you may want to refer back to my first blog post :-). With the duplication range and with the new information of OAV syndrome, I have researched three articles with other (particularly males) that match OAV syndrome and the duplication in the EXACT same range. Interestingly enough, our genetics doctor called last week and wants to meet with us in June again. Although Liam does not have any ear external ear changes (I do on my right ear but it is very slight), I have very specific questions for him. OAV syndrome has a high rate of abnormalities for ears, jaw, eye, heart, cervical spine, and kidney's I have some direct concerns for our genetics doctor. The first question I have regarding Liam's possible link to this syndrome is about renal function.  Thankfully the last time we went to genetics he had a bone scan, which is a set of x-rays to check on Liam's growth. This showed a Gallstone, which lead us to having an abdominal ultrasound and during that they also look over the kidneys. So, it is my hope that we may already be able to tell or "know" that his kidneys are of normal shape. My only hesitation with this is that the tech doing the ultrasound last time (we've actually had two) specifically asked if Liam had ever had any mid-line surgeries. I said "Yes, open heart surgery" and his response then was "but no bladder surgery?" ..... so I hope that wasn't a telling statement of sorts back in December, I guess I'll find out in June! Then I have one additional concern and that is if his vertebra in his neck are completely formed and not fused. OAV syndrome also heightens the chance of both of these things happening and since Liam still can not move his head up to the sky quite like we can I NEED this checked as well. I am wondering since he had the bone scan if anything was shown on it for this area as well.... it certainly would be nice to look at the x-rays from last July and just know the answer without any additional tests needed. I'm literally writing this blog to be able to print out and remind myself while I'm in the genetic's office what my concerns are and why I've linked them., but if you ever wonder what spins in my head about Liam's health and development now you know :-) And with that I've officially down loaded my mind so it can shut off about this stuff until June :-)

Easter

So our Easter was nice, we had church in the morning

Which had ended in an Easter Egg hunt for the kids, best part was when Liam looked up at me and said excitedly to me "I ga cem" translation  "I got some" he was thrilled to put eggs in his little bag!

Before church we had attempted to take a family photo, but that's pretty hard when you have one child that usually won't look into a camera! So that went like this

Notice Thomas's face, I believe that one is the "Oh my goodness, this is NEVER going to work" face . LOL

Well maybe this will work, we could maybe cut the photo in half and have a really nice father-daughter picture!

Last one, best we probably could get with no one behind the camera, Liam wanted NOTHING to do with any of this!

But he did love the morning Easter grass

And both kids liked there baskets

And Ayiana had dictated a note for me to write, so we know that the Easter Bunny as been told "Thank you for the presents"

I hope everyone's Easter was great! One last day off for both kids, then back to the school routine tomorrow.

Zoo time!

So after a fun morning playing ball (see pictures below!)

We went to the Zoo this afternoon, it was really busy but I thought it was good practice for Disneyland which is scheduled for August. Liam did SO well, it was really exciting for all of us.

First we went to the Elephants, next the monkeys!

Then tigers, and Giraffe's. Here is our newest baby, born yesterday!

Then on to the Seals!

The Photo booth said "broken" but Liam didn't mind!

I still managed this shot from the photo booth!

Around to the Rain forest, where we went slow so Liam could climb each stair. Ayiana had to sit a few times to wait.

I think Liam wandered why the Gorilla had no face?

Each time we go we do this shot, Ayiana is getting taller!

Then we petted the goats

Went back around to the Monkeys, where Liam decided to start hanging on the bar like one , hahaha!





At the end we went to the gift shop and Ayiana got a flashing wand, Liam a Giraffe spotted helicopter. I was really surprised when we went to pay, Liam was good at putting up the toy for the cashier without me saying he needed to, he did cry while he had to wait for her to scan it...but for him to initiate the transaction without me having to force it was HUGE and he was happy as soon as he got his toy back... he has carried that helicopter in one had now for the last 4 hours :)  Overall a VERY Good Friday for us indeed!

What is Good Friday

Today I am posting something I wrote for my journal in Babycenter.com in 2010... although I try not to dwell upon Liam's first Good Friday and Easter I still find reading the account of my own mental breakdown both heart breaking and uplifting all at the same time. It is my hope that by sharing this story I help at least one person,

Last year Good Friday was April 10, 2009.
It was also the day my son had open heart surgery.
I remember that morning so vividly, cradling
my sleeping son in my arms. The doctor came
in and asked "you scared?" My husband and gave
a quick "Yes" and the doctor said
"that's a good answer otherwise I would
think I messed up somewhere in our talk yesterday"

The day before surgery we met with the surgeon
and went over the procedure including survival
rates and any problems that could arrise. I
actually remember very little from that conversation,
I was to scared and anxious to think.

But there we where at the hospital early
on the morning of Good Friday with our 3 month old son,
waiting for his surgery to begin.
Right at 8:00 in the monring
the surgical nurse came in and said "okay,
we're ready" then asked if we would like to
pass Liam off there or at the operating
room doors. We opted to walk him to the
O.R. As I passed Liam off I gave him a quick
kiss, he was sleeping and wouldn't know what
had happened when he woke up and I wasn't there.
God give me strength, I hugged on to my husband
as we left to the waiting room. One other family
also was "passing" off their child at the O.R.
but she was a bit older maybe 2 and was screaming
back for her mom. It was heart wrenching but
looking at the bright side at least my Liam
was too small to do this.

Then I thought to myself, I always wondered
how Mary, Mother of Jesus, must of felt on
Good Friday.
Then thought today I just had the tiniest grain of that.
I too handed my son off, to be cut on, and although
I know that the survival rates are high, his heart
would be stopped and he really could die. But I
would not have to watch any of it, I though Wow
Mary actually watched....
Can you actually imagine watching
your son being beaten and drug through the streets
then nailed to a cross, knowing he would die?
I can no longer fathom that idea, but I do know that the
pain must have been incredibly deep.

The days following went by quickly, and even though
my son was doing well, I was not. Mentally I had
gone through so much on so little sleep, I could
no longer keep any line of straight thoughts or
ideas. On the night of Easter, I was hospitalized
in a behavioral center. No longer able to sleep, and
having lost 10 pounds in 4 days from lack of
eatting or drinking I needed serious help.

Thankfully that help came quickly, and much to everyone's surprise Liam was released from the hosptial on Tuesday. My saddest memory is the call I got from
my husband saying Liam was home, not because he got
to go home but because I could not be there with him. And  more so that I didn't get to pick him up from the hospital. That morning I professed I wanted to go home to my doctors, but of course knew that was not possible. I was told on Wednesday afternoon I would be there a while longer.

On Thursday morning prior to seeing my doctor
I prayed, writting this prayer in my
journal:

Good Morinng Lord,
   It's a beautiful day Lord and I pray this
morning for forgivness once again and guidance
When speaking to my doctors so that I can be well.
My eyes are on you Lord When they start to stray away
I pray that you can help guild them back towards you.
I'm so thankful you are a loving God, a God I can trust
to do so. Thankyou for allowing me to grow closer to you.
In your unmatchable name I praise you.
-Amen

After meeting that morning with my Physiologist,
he told me he was releasing me. I remember calling my
husband and telling him, his question "I thought you
said he was keeping you for a while longer?"
my reply "well he just said I can come home, come
and get me please." How's that for the power of prayer?

I later read about what scholars believed Mary did after Jesus' death. Many believe she in her room for
the three 3 days from Jesus' death to his resurection.
I guess I felt some of that too. I am so
thankful my son is alive and well. And I thank God for
sending his son to forgive our sins, where would
we all be with out him?

I have heard people ask why do we call it "Good Friday"
When it was the day Jesus died?
Well now I know, it is the looking back and realizing
that we would still be unforgiven sinners without
it!

A couple things to note:

I know I had preconcieved notions about
who or what might happen in a "mental facility"
here are a couple facts I discovered:

-There where 12 people, 10 women and 2 men
in the unit I was assigned.

-80% of those women where caring mothers

-over half had Bibles with them and where
believers of the Lord.

-Everyone I spoke with had jobs and lead
what most of us would consider "normal" lives,
business owners, executives to companies,
librarians, and even social workers.

We shared stories and were "normal" people,
who experienced extrodianry circumstance.
(had a gun pulled on at work, had post partum
depression, had a child overdose to name a few)
People who many of the therapist would state,
decided to go for help rather than dull the pain
with drugs, alcholol, or other vices. I quote
one therapist "you are more healthy than the
people who never come in and ask for it"

Ending note:
If you think you may need help to overcome
depression or any behavioral disorder ask
for help, there are so many people in the same
situation, you and your family will be glad
you did.

Biter Biter

Ayiana has since she was little been a "bitter," she does not push, pull, or steal toys when she reaches her point of frustration she simply bites. This has occurred about twice a year since she was 21 months of age, and apparently even with the hope of it "going away" after preschool years it evidently has NOT. Yesterday afternoon Liam and Ayiana where in his room playing, all was well and they both sounded happy then it happened, the screaming.... immediately I asked "Ayiana what did you do" she came to me shaking and crying and told me she did not want to tell me, I told her she better and then she told me she bit her brother. "What, you did what? Get in timeout" so off the the corner she went and Liam and I connected in the hall, I undress his shirt and then I couldn't find the bite so I had to ask her where... she pointed on her arm where and I said "how hard" she said "medium hard" oh my goodness... found the bite and I was upset, bruised and swelling already! I took Liam into my room, Thomas had just gotten home and had heard a portion of the commotion. I called Ayiana in to the room and I asked what she should have done etc. Liam did NOT help make it seem more serious by laughing hysterically the whole time (he was happy to have an ice pack to play with now as well). Ayiana went to her room knowing she would be receiving one spanking because the last time she did this she was told that, so she did...with not at tear until I told her to clean her room and that she was on a "one star" for the rest of the day and all tomorrow. She asked how long she had to clean her room, I told her 30 minutes, she (being her usual self) asked what would happen if it was not cleaned in that time. I told her I would get a trash bag and take everything not put away and throw it away. I closed her bedroom door and she screamed and thrashed about moving things, occasionally I could hear her pipe out about never ever being able to finish cleaning in 30 minutes. She did of course, in 15 minutes, and the rest of the night was an angel.  At bedtime Thomas was saying prayers with her and her special prayer was  "That the Easter bunny bring me lots of.... love" Thomas said it was incredibly hard not to laugh at this one, it was apparent "lots of candy" was probably what she originally thought then thought better of that and asked for love instead, and was obviously worried that after being in so much trouble today the special bunny may not visit at all! Today since she is on a "one star" she has no electronics usage, no choices in clothing or food, and  must complete 2 chores. Yesterday she cleaned her room and putting all her own laundry away, today she is scrubbing walls and this afternoon will be cleaning mirrors/windows. She apologized to Liam a few times while scrubbing walls, sung to him, kissed and hugged him and overall I think feels quite guilty for being mean. The hard part for me as a parent is realizing that she is having physical knee-jerk reactions that I PRAY and HOPE she can learn to control because the last two times (once with her cousin and this time) she has said to me "he would not leave me alone, I wanted to play by myself and he just kept bugging me over and over and over. And each time we say, "you need to find an adult to help, not bite" sigh. Next time we told her everything would be removed from her room less her clothes, bed with only pillow/sheet/blanket... kind of more jail cell like, hope that might scare her enough to think before acting. And since this was such a hum drum woe is me-the-mom post I am putting pictures to look at that are much more fun!

Ayiana and I played "April Fools on Dad"

Thomas and Liam Cloud watching on Monday morning

Ayiana at the park on Monday

Liam and I at the park on Monday

Hut hut hike

It has been so beautiful outside so every morning that is were we have been. The other day Thomas started playing "football" with Liam. Thomas would put out one hand on the ground in the basic lineman position and say "Down forty-two hut hut hike" pick up Liam as if he was the football and race around the yard. It was very funny to Liam and extremely cute to watch, Liam asked to do this over and over, towards the end (before he was tired of holding his head up while being ran around the yard under Thomas's arms) he actually got "in position" with dad and started saying hu hu hi... Lol he tried to say once the forty two part but that was a little challenging for him...we laughed so hard at his hu hu hi though! So awesome for him to be fully engaged in boys play! Sunday night I was in the shower with Liam, for those that do not know Liam, he does not like being fully submersed in water (actually it seems to terrify him some)so he hates baths but is okay in showers...so showers it is! Anyhow, We were sitting in the shower and he looked at me like he was needing something, I asked him "what you need buddy?" and then he leaned in for a hug and just stayed there. Maybe this seems so very small, but for Liam it's HUGE we almost always have to ask for hugs/kisses or just steal them away.... That was the first time I think I have ever seen him look so longingly for a hug, I held him and the tears just came down...it was a joy for him to look straight into my eyes (also a rare thing)...and then respond with wanting to be hugged....and it was simply the most wonderful end to the day.

Buh u

Ayiana has often told us that she wished Liam could talk, and every birthday she says "I hope by (insert age) Liam can talk, I wish he could say I love you Ayiana.". I keep telling her he will and that he is trying really hard and making clearer words by the day. So this morning we were sitting eatting breakfast and I told him "I love you Liam" and he said what sounded pretty close to "love you" back. I asked Ayiana if she heard him, she said no, so I asked Liam to tell Ayiana "love you" and he paused as usual, we have to wait longer then you would for most responses from people with him but then he said loudly "Buh u" not once but twice...Ayiana was SO excited and she said "Love you Liam" back. I think it made her morning! She is also doing much better, fever is gone and coughing is less so yey for antibotics to help her out. Keeping this Sunday low key and hoping for a restful fun week off from school :)