Teeth

Or the lack there of! It seems that for awhile Spitfire and Bebo where neck and neck with teeth falling out. Bebo had lost two before he had come to be a part of our family. As soon as Spitfire had loose teeth it seemed Bebo's teeth started to wiggle. He lost a bottom tooth and she lost her two front bottom teeth. He then lost a front tooth. A few months went by and no one lost any teeth. Bebo lost his "odd" shaped tooth right after Christams and I'm waiting to see how it is going to grow back. Now they are back to "competing" again! LOL Spitfire lost her first front tooth a couple weeks ago and it has changed her little smile so much. Both have other teeth that are ready to come out. They are keeping count how many each have lost.

Twink's teeth are nowhere near ready to come out. She will come to me wiggling when she sees the other kids doing it to their teeth.

Speech Progress!

It's been awhile since I've blogged about anything especially about the progress with the children. I'll start with Twink for today. She has made some amazing improvement in the last few months that has shocked everyone. When were were told she would never talk we didn't want to believe it. I knew it was a possibility and the longer she struggled the more I started to believe maybe it was true. I'm not sure I'm going to say this how I actually feel it but I hope it comes out right. I'm not good with words at times.

One always wants what is best for their child and will expect them to try to do their best. That is all we want Twink to do. If her best was to make sounds and point, then so be it. We were still going to push her with speech therapy but she was always trying. That is the only thing we can ask of any of our children, their best. The hope was there that she would talk but reality was always knocking at my door. You could feel the frustration level from her when she could not get her point across. I guess what I'm trying to say is don't expect more from your child when they physically can't, meet them where they are.

Today it is different. Our girl can talk and 90% of the time we can understand what she is saying. Not only that she is using ASL with her brother. She still requires speech therapy four times a week but we have come so far!

Seizures or Tic?

Tell me what you all think of these video's of Bebo. I have brought it up to our family doctor but he seemed to think it was behavioral, I'm not so sure. I would think that after 6 months these behaviors would slow down and they are not.

**Let me add that the head movement is not in anyway related to what he is watching. Remember we have watched him do this for the last 6 months. Also in the bottom video the leg movement is involuntary.He does this when he is relaxing, watching TV and when he is trying to fall asleep at night. He does do it for a bit when he firsts falls asleep as well.**

Just a side note, Twink is letting me know that she tooted and that she has a stinking butt in the second video. :)

Never Underestimate

Never underestimate someone/something based on what is on paper! So many people let their fear stand in the way of some really beautiful moments. They depend on experts to know what is best and to know it ALL!

Here is our daughter who we were told would NEVER speak! That very doctor that told us she would never talk made a statement (in a condescending tone) that spoke volumes to his personality. This is his statement to my husband and I, "And you adopted her knowing all of this?" I really wanted to scream at him what makes her less desirable than any other child? We wanted a child and she needed a family. She has medical needs that take lots of time and patience. We prayed and knew this was our child! He obviously only saw her as a medical case not a child who was loved dearly already.

Twink has made HUGE gains in a years time (she's been home now 32 months). Actually it has been the last 3-6 months where she has blossomed in her vocabulary.  In another year, I plan on sending a video to that doctor to show him just how well she is talking. I think they way he treated us was wrong and I plan on telling him.

Oh the first statement she makes is she wants to see the picture and then she wants to see *** (herself).

Going Through The Motions

Not very well either I might add!

Happy Birthday!

My niece, Special K had her first birthday party this past weekend. Just look at how cute she is! We had a great time at her birthday party as did the kids. SK is already signing to her mama thanks to Baby Signing Time Videos. I love to watch her sign, it's so sweet!

Enjoying the first couple tastes of her cake. I'm SURE she did not sleep that night due to all the sugar! LOL

She loved the feeling between her little fingers. She worked at it until it was tiny little piece.

The aftermath! ;)

Bebo loved these glasses. He is one silly little boy!

Twink enjoying her juice and trying not to get wet!

See what I mean when I say she was trying not to get wet! LOL This is Spitfire who LOVES the water.

Umm, yeah this was my idea! hehe Poor Jewel went swimming.

Looking Fear In The Eyes

Have you ever looked into an animal or a persons eyes and seen fear? I don't mean just any fear, I mean shear terror? I have and I see it more than I would like.

Twink has an extreme fear of doctors, dentists, etc. She is fine walking into the office but as soon as it is time to head back for her to be weighed and measured it is a total melt down. This is where her fear starts and my lack of muscles come into play. As long as it is a routine check things are pretty good. I call pretty good screaming, crying, and kicking. If the visit is one where she needs to be held for something then it is a different story.

Twink does not like to be restrained. It does not matter if I do it or someone else does. For the record, I prefer to be the one to do as I can be the one who looks into her eyes and talks to her. She has had so many tests where we have had to hold her. Numerous sedations, Castings, Botox, EKG, Echo, X-ray's, Lab Work but the worst two have been the EEG's and her eye exams. Both have to deal with her super sensitive head which has major sensory issues compounded with us holding her down. She goes into this fight or flight response. The only thing is she does not do the OR it's both!

Holding her for these procedures is nothing short of a miracle. The physical strength this child demonstrates during these times is mind boggling. It takes every ounce of energy and all my strength to hold her. Most times that is not enough.

Looking into her eyes during those moments breaks my heart. She looks like a scared trapped animal looking for a way out. Many times I have to look away when she is like that. You see her fear, her terror in her eyes. They are scanning the room searching for a way out. Searching for a reason as to why this treatment is being done. Soaking in every face that is doing this to her. Screaming at the top of her lungs that it hurts and she does not want it. Shaking her head back and forth. Her face soaked with tears and snot streaming down her face. It's all I can do not to cry with her. I know what they are doing is only helping her but times like those it's hard. It's hard to see her react like that.

All is better within a few minutes of each procedure with a little love and some holding. Oh how we dread those appointments though.

Racial Identification?

The look from Twink is about how I feel when we received a letter home from our local school district. The letter/form title reads Student Racial and Ethnic Identification. It states in this letter that they have adopted a new policy that requires them to collect this information. The information will be used for the following:

- Report information to the State and Federal Education Departments
- Plan educational programs and make sure that they are readily available to all students.
- Study the movement of students in different ethnic groups as they move from school to school.
- Analyze differences in academic performance, attendance and completion of school.

If this form is not filled out a student records officer from our school or the district will be required to identify the group to which the student appears to belong, identifies with, or is regarded in the community as belonging.

Does anybody else see this as wrong? I know people who do not have children of a minority race see no problem with it but I just do not see why this is REQUIRED! We have already given this information once when we register the child for school so why do have to do it again?

I can tell you that both of my children from China are register with the school system but do not attend the schools. One goes to a deaf school and the other is in the preschool program. We are moving out of the school district but I am disappointed that they have decided they needed this new policy.

What are your thoughts?

New Glasses!

Twink received her new glasses yesterday. I'd like to say it went without any tears but anyone with a child with sensory issues knows that was not the case. She hates it when anyone does anything with her head. We've finally arrive to a point where brushing her teeth is not a fight but it took a TON of therapy. Brushing her hair is good as well but that too took along time.

When we placed the frames on Twinks face she went into hysterics! She kept screaming, "I don't wan em" over and over. I whisked her out of the building and brought her home where everyone was roasting marshmallows. That seemed to calm her down a bit. Give her food and she is happy as a lark. I started to notice she was looking all around taking it all in. You could tell she sees better. 

Today she has only told me a few times that she did not want them but there has been no tears! She off playing and having a great time. We will beat those sensory issues yet!

Baby of The House

Twink is the baby of the house when it comes down to the ages of all of the children. I've been thinking about something for now for awhile. When we decided to adopt last time we knew we were going to go older and in between Spitfire and Dash. I've always felt that Twink needed to be the "baby" of the house.

It was my thought that she would not do well with someone younger than her. When in fact she actually plays better with a child that is a year or two younger than her. See I believe it is more my own fear that plays into that mind set.

The thought of Twink having a younger sibling makes me quite sad. The thought of that sibling one day surpassing her in something just does not give me warm cozies. We recently had a little tike (almost 1.9 yr old) over at our house and I could not believe how well she was talking! Made my stomach kind of ache. Then I did a little dance for how far our girl has actually come. My niece Special K who will be 1 yr next month is pooping in the potty! Ummm, I can't for the life of me get Twink to poop in the potty. She is fully pee trained but no poops. I actually think she is withholding.

When I get frustrated people feel the need to remind me that Twink either had a stroke or has cerebral palsy. REALLY!! I forgot that tiny tidbit, thanks for reminding me. It's pretty hard not to compare your 4 1/2 yr old to a younger child who is far exceeding what your child is doing. Most days I'm fine but there are days that are harder than some.

Twink just has her own rhythm that she moves to! :)

Who's The Boss?

 Twink signing to Spitfire "Stop"!

If you answered either Spitfire or Twink than you must know that these two little girls are making us crazy lately! They both think they are the boss of the house. Between the tattling, yelling and face making we need to keep them separated. Only problem with that is they look forward to playing with each other when they get home from school. Spitfire is the culprit for most of the problems, as she like to be the instigator. Boy does she know how to get under Bebos skin!

Apparently Miss Twink thinks she is the boss at school as well! I received a note home stating that her speech is exploding. Not only that she is bossing her teacher around and tattling on the other children. I'm sure they think it's cute but we don't. I'm going to have to make sure they do not continue to allow either behavior.

We really can't put our finger on when Twinks language took off but she is really talking up a storm. She is talking in sentences and we can usually understand what she is saying. We saw three different older children that we had not seen since last fall and when they heard her talk they were shocked. The first thing they said is, "She can talk now?" Can you imagine how proud I was to say yes! :) We're loving it but holy smokes this child can yell momma for a long while!

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!

Wordless Wednesday

One Month!

Bebo has been a part of our family for one month! I can hardly believe how fast time has gone by now that he is with us. Life at home is going very well. He has adjusted great to his surroundings and his new family. I don't want to give the illusion that we do not have any problems because we do. It seems that when we correct a behavior Bebo automatically turns into himself. He stops making eye contact and just refuses to move. I'm not sure what he is thinking and to be honest it makes me a bit crazy. It's almost as if he is testing me. He does not do it as much with The Count but then again I am home with him most of the day. If anyone has any suggestions I am open to them.

Bebo is picking up sign language at lightening speed. He knows 3/4 of the alphabet and I've been working with him less than a week with it. I broke it down for him and it's almost too easy for him. He is practicing his hand writing, letter and color recognition. He does not like to sit down and do work but once he sits to do the work he is fine. He is so bored at home and ready to go to school. We go for his intake process next week so that should be exciting and scary all at once for him. I'm not sure where we go from there though.

Did I mention that he and Spitfire are connected at the hip? She just adores him. She helps him with whatever he needs and just looks out for him over all. Lia thinks nothing of him. Bebo loves to rub Twinks head or her cheek. It's very sweet to see him interact with her. He is definitely used to playing with younger children. Maybe I should say looking after them. If she cries he will pat her head or her arm. He loves babies!!! Anytime there is a baby around he needs to see that baby.

The above pictures were taken yesterday. Neither were very willing at first. I had to tell them that after we did pictures we could eat lunch! LOL Both were very happy to hurry and have their pictures taken. I also had to place some silly action figure on my head for them to even look in my direction. Oh what we won't do for a couple of pictures! ;) I have pictures starting from Lia looking at Evan like there was no way she was sitting next to him having her picture taken with him, to him smelling her hair and the two of them cracking up. Too sweet!

Cerebral Palsy Awareness Month

March is Cerebral Palsy Awareness Month. I am passionate about cerebral palsy and any kind of awareness I can bring to the disorder. I want to teach people that there are MANY levels of CP.

I'm asking that you please post the following You Tube video on your blog to help promote Cerebral Palsy. In doing so you will receive an entry into a drawing for a Scarlet Threads Apron of your choice! If you point them in the direction of my blog you will receive two entries! :) If you just let me know that I've educated you I'll give you an entry as well! :) I will draw the winner on March 31st and post who the lucky person is!

There are many children on the China Waiting Children Shared List with mild cerebral palsy. Many just need a loving home with a family to meet their full potential. Our daughter has mild cp and she has blessed the pants right off us! If you have any questions please feel free to ask and I'll try to answer to the best of my ability.

Resources for Cerebral Palsy
Reaching for the Stars
UCP- United Cerebral Palsy
CHASA - Children's Hemiplegia and Stroke Association
Adopting Children with Cerebral Palsy Yahoo Group

Mama

The look on her face says it all. 

We had just arrived home after 17 days in China adopting our new son and a new brother for the children. We had made amazing arrangements for our children that we were leaving at home. An amazing friend offered to stay in our home with her children (whom she home schools) and ours so there would be as little change for Twink as possible. All the children could go to school and Twink could still have the stability and comfort of our home. We talked to the children via Skype while in China and Twink would come over a few times but she was usually her busy self.

When we arrived at the airport Twink had just awoken for her nap. This is NEVER a good thing especially if it is not a long enough one. She needs to wake up gradually and on her own terms. Needless to say she was none to pleased to see us. She literally screamed if I got close to her. She only wanted Michele (my friend). Known this is how she is when she wakes up I thought I'd give her a few minutes and all would be good. Boy was I ever wrong.

When I heard the words Mama come out of her mouth I was excited for a split second. I say a split second because they were not directed towards me, they were directed towards Michele. It was an awkward moment. Michele was trying to calm Twink and explain to me that she had just started calling her that in the last couple of days. She had been calling her Wawha up until two days before we came home. 

Our luggage did not arrive so we had to wait around for what seemed like forever. Anytime I would try to get close to Twink she would become upset and I would receive some serious glares. I even tried to bribe her with a lolly pop. It became evident our luggage was going to be delivered to our house so The Count took Twink from Michele. Then it happened. She started to scream.....for.....Michele Mama! 

It....was....awful!

I was having flashbacks of China all over again. Was she? Just what was she thinking? I was literally left standing there looking on with friends and family as The Count walked away with our baby girl screaming for another woman she was calling (thought?) Mama. Did I mention she VERY seldom called me Mama? I could go through the long list of emotions I was feeling at that moment but I really just longed to hold her. I wanted her to want ME!

It will be a VERY long time before we leave her again. Never in a million years did we expect her to react the way she did. If I had known she would reacted like she had, I would have stayed home.

Think about this for a second. Any of us adoptive parents go to China for about two weeks. We hope and pray that our new child starts to form a bond to us by the end of our two weeks, right? We are replacing some important people that stood in their lives for either a short period of their lives or for a very long period of their lives. While Evan was bonding with us in China, Twink was bonding with Michele back in our home where she felt safe.

I do not know if it goes back to her time in China. I can only guess. I can only guess that she thought we were not coming back. I'm sure there are people out there that will think I'm over analyzing. I've seen her reaction to her adoption video and she remembers something!

It took the entire weekend to regain Twinks full trust again that we were not leaving her. She tried to push our buttons, refused to eat, and started calling EVERYONE Mama! All is well now and she is calling everyone by name and I am now officially Mama! :D

I will never forget that I am replaceable!