I had laid out clothes for everyone (except myself...rrr) last night. I woke when Dean's alarm went off at 3:30am. He went and got coffees and gas and really it was to warm up the van as well but it was not very cold this morning.
I went to wake the boys and get them dressed. Honest truth: I have never woken the twins in 3 years. We aren't sure if they sleep...? I walk in and see 2 sets of white eyeballs staring at me through the dark. I really don't know if they sleep. I hope so...! But I still had to manually dress them b/c they were wobbly. I went to get Azlan and saw in perfect Azlan fashion...he decided to sleep in his clothes. This boy...he's so...Azlan. :)
I sent each one downstairs to lay on the floor/couch and wait for Daddy. I had 7 dressed, hair done etc and shoes on when Daddy walked in. Onllyyyyy...they were all up chatting away. Umm...it's the middle of the night! I quickly grabbed Izrael and Dean got Taizi. Each of us got one baby ready and in there some where... I was dressed and ready to go and so was Dean. It just happens. Not sure how ;) We were all in the van 100% on time and ready to go. It's pitch black outside and it took a few reminders that it was the middle of the night. We were shocked when 20 minutes in...everyone (except Chazano and Zunduka...I'm telling you...they don't sleep!) were sleeping.
We arrived at our appt...20 minutes early. There must be a first for every thing in life... and this is one for this family ;) Dean and I grabbed breakfast at Subway as in my morning scramble I had made breakfast for all the kids to-go ;)
When I went in to the appt I saw there was a full playroom so I ran out to Dean to tell him he was free to bring everyone in. We were in the Bellevue Children's clinic today.
Taizi began immediately. But I had a lot of time to spend with him and he does respond to a simple correction. From hysteria, screaming, extreme grinding, hands in his face to starting all over. When the team came in to the room he was sitting on the table and completely panicked. He sat, grabbed my leg ( I was sitting there beside him) and clawed his way up my leg and laid onto my shoulder. It was oh-so-sweet until within a few seconds he opted to head butt me and nailed my jaw. The doctor stopped and was like "OUCH". Yah. After the exam it was back in the stroller. I got hit twice in the face by his head today...and it was less than lovely :)
His weight was 9.8 today. Ohhh...we have no idea. We just take each day as they come.
So that means he's lost 200g since the last appt.
We talked about these little 'holes' for lack of a better word he has on each ear. One is always open and oozing. He said we need that surgically removed asap b/c if the infection persist, it can infect the ear cartilage. Well it's been oozing since the day we first met him so it probably has been going on for some time. The other one, I assumed was a mole, is on his neck. He said it definitely is another one and is related to his deformities. So interesting how all these little things are connected. He said sometimes they track all the way up the neck to the sinuses.
He said he would like to pin his ears back at age 5 (only a year away) b/c if he IS a candidate for hearing aides (we look at the positives ;) and we do know he needs glasses, he can't do either well with his ears the way they are.
He said he can see ear drums in both ears but with goldenhar (as is the case with Azlan) sometimes the bones are all fused together and non functioning. Azlan has all the 'pieces' but they are fused and do not move/work at all.
We went for a behavioral audiology exam which my opinion has never changed on: it's out of the ark!! Sitting a child (Azlan did it starting at a few weeks old) in a room with random frequencies and toys banging all over the room tells you...what...? I had to wear ear plugs in there b/c her sounds starting at 50 dcb!
When we came out she said he laughed at 95dcb (which he laughs all the time and esp in a strange room) but it could have been due to the vibration if he's sensitive to that and he is. In other words, even with the sounds put right onto the bone behind the ear...he responded to nothing.
Therefore he is getting the BAER test which is done under sedation and the only accurate way to measure brain response to sound. As the ENT says...that doesn't tell us how he HEARS sounds but how the brain responds to sound.
On April 10 he has a sedated brain MRI and now a CAT scan to see the bones of the ear and if they are fused etc. Then they scheduled another sedated day in the O.R to put tubes in his ears due to fluid and an open palate and the BAER.
It was a great, productive day. I must say since the beginning of the journey we have never walked away without information and many times a diagnosis! Nothing has felt pointless or like a waste of time.
He will be seeing all three boys as well. He was shocked that we have 3 boys with clefts, goldenhar and deafness. He said the three are not that common together and we told him the 2 from China did not even have this in their medical files.
You'd just have to know the WHO is overall this journey to get it ;)
Soooo we left.
And went to a playground with a coffee and the kids had so much fun.
It would be so much fun in the summer as it's all a sprinkler park. Azlan at the top!
Zihao isn't super active. We always cheer when he runs ;) He sat on the whale for a long time.
Little beauty Azahria Peace
Azlan and Chazano
Tirzah climbed to the top only to have Zion scream at her on the other side ;)
Chazano and Izrael in a sunken boat ;)
Then we headed home. We stopped at the outlet mall where I bought a baby gift for my friend that just adopted a newborn baby girl (gorgeous!). When I came out Dean buckled Izrael into her seat and came around to get in the van. I had noticed my feet were extremely swollen (it's a first for me and NOT cool :) and when Dean got back in he had this massive back from Coach. I don't think I breathed or said a word for quite a while. I opened it to find this beautiful bright pink bag I had oogled over a while ago and would never have bought b/c I would never have spent the $ on myself.
Seriously. My husband is amazing.
We've been through it all. And back. And we are here living something beautiful. Together.