My Heart Broke Yesterday!

Yesterday I went to pick up Bebo from school. I am always early so that he does not have to wait and wonder where I am. I was early and waiting in my van when I noticed some of the little children had come out. I decided I would get out of the van and go in and wait.

That's when it happened. I saw the two boys from his class exiting the building and coming down the stairs. "Mr. Excited" came up to me and started signing as fast as he could. He was pointing to the building, looked mad concerned and then the only sign I could understand was the very last one, "good". I know he was talking about Bebo but I have no idea what he signed. :( All I could do was nod. :( My heart shattered into a million pieces. I want so bad to communicate with the children and the adults but my sign level and confident level is no where near what I'd like. If only the college didn't double the price of their ASL classes because we were are out of that county.

Bebo was waiting for me inside and was very excited to see me. I think it was good for him to have to wait for me so that he understood that I would come for him. Last night we were looking over his photo book and when he reached our old family picture he points to himself like he always does and questions where he is. We are slackers and have not had a new one that includes him done yet. Soon though I promise! It is evident it is important to him. Then he see the picture of our house and and a smile starts on his face. It becomes SO big that he opens his mouth and a little squeal is released. He threw his arms around me and was just so excited! I'm not sure where this all came from because we've looked at this book a number of times but he saw it in a whole new light.

We finished his bedtime routine. The Count and I tuck him in at separate times for a little one on one. I covered him up signed good night, see you later, and I love you. Fixed his blankets and that's when he usually pulls the blankets up so we don't kiss him. It's kind of a game we play. Last night he puckered up and wanted a kiss from me!!! It was so sweet.

I think Bebo was beginning to think he'd never go to school. I mean he watched as the other children left everyday and he stayed behind. He really has changed quit a bit since he has gone to school. Maybe it is just me. LOL I really needed him to go to school. He is doing great and picking up some new signs. His friends have really embraced him and are really a great bunch of children. I could not have ask for him to be in a better class!

1st Day of School!

Last week was spring break or Bebo would have started school. We had his IEP meeting the week before so he was able to go sit in on his class for a second time. All four of the children in the class we so excited to see him that day. They were pretty bummed that he only stayed an hour but very excited to know that after break that he would be coming all day.

Sunday night we explained the best we could to Bebo that he would be going to school when he woke up. I showed him his orange backpack and his Cars lunch bag that he picked out. He knew what those were for as he's seen me for the last two months pack lunches and put backpacks on the girls as they go out the door for school. When he went up to bed and I told him that when he woke up we would drive to school with his backpack his eyes became real big, he clapped his hands and squealed! He signed he was going to sleep right then. :)

The boy was up and as excited as could be Monday morning! Can you see him beaming with pride with his new backpack and lunch pal in the above picture. Oh, I'm sure you can see his nerves start to settle in in the second picture. They didn't last long. We went right up to his class room and his friends and teacher were waiting for him. One little boy gave him a great big hug when he saw him. It was really a the sweetest thing. Bebo brought his photo album from home that had all the pictures of our family. One of his teachers wanted pictures with labels for his language development so we sent the book in. I thought it might help him feel more comfortable the first week. I'll send the individual pictures next week.

There are five children in his class, four boys and one girl. The little girl is from Burma. All the children have some sorta of hearing aid or cochlear except one little boy. Bebo receives his hearing aids next week. He seems excited but I'm not really sure he knows what is coming. The woman in the brown shirt above is his main teacher and the other woman is the audiologist. She visits the room every morning to make sure all the children's hearing devices are working correctly. 

The school developed another program as they were seeing a large population of children coming over from other countries with no previous language like Bebo. He spends a good chunk of his day with his teacher Kara. Kara is trying to catch Bebo up with the rest of his peers. She is teaching him the pre-writing, pre-read/vocabulary and pre-math skills. He is learning very fast. Ummm, did I tell you that they put him in 2nd grade? That means in a couple months he will be in 3rd grade! Hmm, I'm not so sure about that one. The good thing is they combine 3&4 grade. He will attend summer school to help him catch up.

If you've made it this far, thanks for reading! We've been crazy busy around here. I've had to drive Bebo to and from school everyday this week. Praying that the busing situation is figured out soon. Hopefully we'll have some soccer pictures for you soon! :)

How Far We've Come

**Video has been added at the end of the post! :) Thanks Carla L.!!

Two years ago we received word on the extent of Twinks "disability". It was shocking to say the least. We did not expect to hear cerebral palsy and we did not expect to hear that she would never be able to talk. We we not prepared for the possibility of Autism as well. We simply thought she had a brain cyst.

If you look at the first three pictures below you can see what we dealt with pretty much on a daily basis. A truly frustrated, withdrawn, grief stricken child. There were many happy times but Twink had these tantrums below multiple times a day. Remember this post? I can happily say Twink does not do this anymore. Well maybe on a much lower level. The blank look I was told was Autism. She did display a few signs of it. We did have her tested and she narrowly passed the test from what I was told just a couple of months ago. I was am convinced it was a mixture of her brain injury and post-institutional autism. Her developmental doctor wanted to retest her in the coming months. Which leads me to this post!

We saw Twinks developmental doctor last week and we blew her out of the water with how far she has come. Twinks speech is coming at us faster than we can keep up. Some of it is still unclear and she still babbles from time to time but this child will tell you what is on her mind! She has new phrases that she has picked up, let me share them with you.

- Noooooo
- Go away
- Wanna go in the car/outside/play
- Kids bothering me
- Leave me alone
- We going to church
- I go potty
- It hurts (she says this for EVERYTHING!!)
- She names everyone in the house by name
- Says thank-you until you say your welcome

There are so many more! Some really funny ones too but I just can not think of them off the top of my head. Everyone has noticed how much more she is talking. Her doctor did not even mention testing her again! Twink visits this doctor every three months so you can get a good idea how much she has progressed in three short months. In fact this whole school year has been amazing progress for her.

Our girl has over come so much! Remember back to when the doctor told us she would never talk was gut wrenching. I'd say it was the worst day of our life as parents but many of you know we've had worse days than that! It was a hard day though. To think that you will never hear your sweet childs voice is a hard pill to swallow. That very same night the Lord gave me a glimer of hope to hold onto. Twink said Mama that night! That very same night the doctor told me she would never talk.

After her very first seizure Twink lost every word that she gained as well as every new sound she made. Same thing happened with her second seizure to a little bit less degree. With every seizure I live with a little fear that she will be set back in her speech. I'd like to say that I'd be OK with it if she lost her speech capability but I've had a small glimpse at what she is capably of doing. I don't want to go backwards. She has fought so hard to get to where she is and we will keep fighting this fight with her. She is my inspiration!

Twink is the reason why we were open to a child with a hearing disability. She opened our eyes that communication comes in forms other than verbal. So while we fight to help her become verbal we fight another fight to help our son become fluent in American Sign Language. Who by the way started school yesterday! I'll post tomorrow about his first couple of days.

To those parents who have children with speech delay don't give up hope. It's a long road but as long as your willing to press on then you will see progress. Baby steps all the way! :)

I had a video to put up but I see that blogger no longer has the capability to place video's on your blog. What happened? Anyone know how I can put a video on?

The picture below is Twink dancing with her shadow!

Potty Training Progress

 This picture was taken a couple weeks ago!

Look at this this poor child! If you stood outside on our garage steps you would have heard this child howling. Twink would do this every time we tried to introduce the potty to her. Her fear was so intense that we have held off until now. I had a wonderful bloggy friend, a Tonggu Momma send me some wonderful tips many months ago. We tried it then but it did not go well. We are now giving those tips a try a again with great sucess! Thank you friend!

See look, it only took a couple of times of her actually sitting on the potty for her to relax. She is doing really great and I'm thinking she will be completely potty trained soon! Won't school be so surprised on Monday. :)

Wordless Wednesday

Home

We are home.We were allowed to leave last night after all of Twinks test came back normal. Both her EEG and MRI showed no new significant changes. We are awaiting the results of her blood test to see if her medication levels are appropriate. They were taken once but she had already had her night time dose so she would give a false reading.

All of this started on Wednesday. Twink started acting really tired and not eating as well as she normally does. Thursday she did not eat her breakfast which usually means something is wrong. The child never skips a meal unless she is not feeling well. I checked her temp but it was normal so we sent her to school. I received a phone call around 1 or 1:30pm that Twink did not want to play on the playground that she came in and wanted to lay down. She ended up falling asleep until her bus came to pick her up about a 1/2 hr later. When she came home she fell asleep again until 5 and went to bed at 8pm without a fuss. She did not eat much of her dinner.

Friday we decided to keep her home even before I woke her up. When I went into wake her though she looked dusky and her eyes fluttered as she tried to wake. They were trying so hard to focus on me but were having such a hard time. Again she did not want to eat but I made sure she had a couple of bites which had her medication in it. She was asleep by 10am and slept for three hours. awake for awhile and took another short nap from 3:30 to 5pm. Seemed fine after that. She even had a slice of pizza for dinner.

Saturday morning same as the others, she did not want to eat. I ended up feeding her. She was not happy but I did it anyway. She fell asleep by 11am and slept till 2pm when she cried out. Something she never does. When she came down she cuddled for awhile dozing on and off. She seemed to be having a hard time waking up. When she would open her eyes it was as if she was trying to come out of anesthesia. She seemed to not be herself and was having a very hard time focusing on us. After about an hour of this we decided to take her to the hospital. She was not following us with her eyes so I thought she was going into a seizure or coming out of one.

I swear the ER doctors thought I drugged her. Once we arrived she freaked like she always does. She totally hates doctors. They asked if it was possible that she got into something. I tried to tell them that she is always like this when it comes to doctors and their offices. She showed no signs of infection and the only symptoms she had was loss of appetite and behavioral changes. They admitted her for observation and to run the tests. Did I tell you they put us in a room with video surveillance? ;) Maybe they thought I had Munchhausen.

So we are here at home with no new answers. They are pretty sure she had some seizures and a possible virus. As far as the EEG not picking up seizure activity, I don't know what to tell you. The last two did not pick any up either so we are not totally surprised. The first EEG she had done she had a seizure about a week later and the second was a week or so after a seizure. I was told by her neurologist that seizure activity can be so deep within the brain that it is not always picked up on an EEG. It is obvious she has epilepsy and needs medication. It would be nice to narrow down which medication would be best for her based on seizure activity.

She still is not eating very well. She looks much skinner to the eye. She sees her developmental doctor on Monday and we need to make an appointment with her neurologist. Sorry this is so long but I thought I'd catch you all up on what happened. I took the above pictures with my cell phone, sorry about the quality. Spitfire was so happy and worried about Twink she wanted to sleep with her last night! Are they not sweet!

Thank you for all your thoughts and prayers! They worked and we are forever greatful.

Prayers for Lia Please

Twink has not been herself the last couple of days. We brought her into the hospital last night due to neurological changes we were seeing. It seems as though she may be having break through seizures when she sleeps but we are not 100% sure. She is very lethargic and has been extra sleepy for at least 4 days now.She is not eating or drinking like normal as well.  They admited her and we will stay until Monday when they can do more tests.

They will be drawing her blood to see if her medication needs to be increased. She will also have an EEG and an MRI on Monday. Please pray that they find what is causing our baby girl to have changed so much. Thanks!

Half the Sky

These pictures are of Bebo taken while he lived at his orphanage in Chongqing which was run by Half the Sky. Thanks to this organizations and people who sponsor children, we now have 21 pictures and short journal entries of his stay at Chongqing SWI! We will be forever great for all the work HTS has done to provide loving care for so many children.


My friend Ginny is having a giveaway!The picture below is of her Chongqing sweetheart, Ruthie showing off the prizes.

Wordless Wednesday

What's Wrong?

You've probably all been wondering where I've been. OK maybe some of you have and some of you could careless! ;) I've always said I would be honest with all of you on this blog. It helps others who are adoptive parents learn. If we can't share and learn from each other than what is the point of our blogs?

Please know that I love my family and my children with all of my heart. They are my life. Also know that I love Bebo as well. I am forever grateful that God chose our family for him! We entered his adoption much like Twinks, with no exception.

The past couple of weeks have been hard. I am really struggling. I wish I could pin it all on one thing but there is so much going on around me that I become so overwhelmed. Bebo has adjust better than we could have ever asked for but I wish I could say the same for me. Some days I do better but other days I'm terrible. Sometimes I feel a huge rage just well up inside of me, it is kind of scary. I'm not even sure where it comes from. By the end of the day I've had enough noise, kids, fighting, tattling, etc. I just want to hear myself think for a few minutes.

Dealing with chronic pain on a daily basis does not help. Not much I can do to relieve it, just pray that warm weather comes quickly. We are tossing around the idea of moving and what that would mean in terms of schooling for Bebo and Twink. We would not be close enough to the state school for the deaf for Bebo which has us a bit stressed. Twink has other options so we are not worried about her.

It was suggested we buy Bebo hearing aids. We are working on trying to find possible grants that work with children who are deaf for the aids. We were told they cost about 2K  for each one. With that said The Count and I are not in agreement with cochlear implants. We have to do at least 6 months of HA's before we reach any decision of CI. We see the cleft team the first week of May. Our dentist told us that there is a possibility there may something more going on with Bebo but will not know anything until we see this team of doctors.

As you can see there is quite a bit going on and this mama is feeling a bit stressed. I know we are still trying to adjust as a family. I've been here before, I know it will get better but the road seems long and dark some days.I am struggling.