Sunday, March 28, 2010

We are Home.

Sorry for no update on surgery but we were at the hospital until yesterday afternoon with no internet.

As for the surgery it went well, her surgeon took his time on the second side like he did on the first because Norah’s faceshal nerve was so close to where he had to go throw to put in her CI. He informed us before the surgery that because Norah has abnormal shaped cochlea’s on both sides she will problubly be very dizzy for a few days, and may need to try in the hospital this time because for some resin with the kids with abnormal cochlea’s the second surgery throw them off balance for a couple of days, more then the first one dues.

Boy he was right, the surgery went even easer then the first her CSF leak was not as bad this time, and again got all 20 electrodes into the cochlea. Our little Norah was so dizzy and would throw up if she moved around to much, this time we knew we and her DR. could not go home so we stayed in the hospital for a couple of days to let her brain catch up with her inner ear fluid. Luckily they were also able to give her pain, antibiotics, and vertigo medication throws her IV. By Saturday she was feeling much better and wanted to go to the play area in the unite we were in. We had to hold her up to look at the toys because she was still off balance so bad. Then by Sunday morning she could stand on her own with Lori and me at the ready to catch her if she fell. It was about lunch when phical therapy came by to brief us and let her go home.

By the time we got home she was ready to go. She was still wobbly last night but wound up tight and getting into every thing she could, and I think we had to play with all her toys, to get her to calm down for a little wile I painted her finger and toe nails, then for dinner we went to grandmas and grandpas house for dinner. She impressed them with her new spoken word “No“. Ha-ha I think she will master that one before to long. She is doing very good so far and is now just taking children’s Tylenol for pain. We will see how her balance is today it should improve every day until it is back to normal. WE are thankful that the surgery went well now we have moved on to trying to avoid infection and looking forward to activation day in three weeks.

Getting weighed in for surgery.

Norah had to dress her stuffed hippo in yellow jammies so that they could look alike. The nurses also gave the hippo his own armband.

Waiting to go back to surgery.

Right after surgery we went from recovery to an express care room where we ended up staying for 3 days.

Dad and Norah.

Out for a wagon ride on day two.

Norah glad to be home.

Thursday, March 25, 2010

Norah’s second cochlear implant surgery is Friday.

Norah's surgery is tomorrow. We are happy and nervous at the same time.
I caught her doing this.

Sweet unibrow!

Lori turned it into a kitty.

This is how we are trying to explain things that happen during the week to Norah. I think she understands that she will have two ears after tomorrow. Well, a few weeks after tomorrow is when they will activate her left ear, but you get the point.
She has recently been trying to get us to put her CI on her left ear and we have had to explain that it won't work over there so hopefully she is ready.

Saturday, March 20, 2010

Just one day in photos.

Lori was home for one of Norah’s days of speech school so I decided to chronicle one day of her life in photos.

Hmmm…..judging by that face looks like the day could go either way.

Some quick love time with mom wile dad slaves over a bowl of cereal.

Ahh Nothing like the classics.

Happy to be going to school.

School equipped with two way mirrors so parent can watch there kids.

Some quick lunch and sign language work before we get to the listening.

Some hula time just for the fun of it.

Yard work helper carrying sticks from tree trimming.

Some movie time wile mom and dad take a break to watch the news.

Try to comfort what looks to be a small demon, but is in actuality a Chihuahua that is scared because tornado sirens are going off.

Then bath and bed for the night.

Wednesday, March 17, 2010

Video reference 6 months post activation first cochlear Implant.

With Norah’s upcoming CI surgery on the 26th I am making this video as a reference to how far Norah has come with her signing, hearing, and speaking and so I can see how far she comes 6 months after her second CI activation, and compare videos. We have never had her try to pick items by there name (only by the sound they make like dog is woof woof, or the ling sounds) so I did not know how she would do, I am happy with the results and look forward to seeing how she dues 6 months after her next CI activation.

One Year with Norah (part 4, the last post)

A turning point.
Norah and I were playing with dolls and Norah stops what she is doing looks up at me and signs “Daddy, I love you” out of the blue. I had not been signing it or talking about it, it just happened. By now I am 100% certain she knows what it means and has never said it to anyone not even her favorite person in the world Lori. I was so excited I called Lori at work. Within a couple of weeks she would tell Lori the same thing. I have worked hard to earn this spot in her heart. It was a labor of love that has payed off big time. Norah will go with me anywhere with excitement in her eyes to what the day holds for us. I have become her Dad not just a fun play mate. She now understands that her mom and I are there to help her as a team and I am not her competition for Lori’s time and love. She now is starting to get more and more expressive sign language to where she not only can ask for anything she wants, but now has started telling us about things on a two to four word level. If she see’s something in the store and tries to walk away we can call her name and sign for her to come back. That alone is huge. Being able to call her name even at home and have her look is such a big deal. Before we would have to always tap her to get her to look at us so we could sign to her. She hasn’t had a night terror in over 6 months, matter of fact now we hear her laughing in her sleep as she dreams. Her imagination with play is impressive to her new teachers. They say it is so detailed with the way she sets everything up. She now draws a picture of people and birds, ect instead of just scribbling all over the page. She has formed meaningful attachments with Lori and I not just survival attachment anymore. There is a full time calmness about her that up until the last three months wasn’t there before. When she wakes up in the morning, it is slowly, she may lay there for awhile and then she gets out of the bed and comes to see what’s for breakfast. No longer shocked awake by the panic that Lori and I are not in the room. She will now go to grammas and grandpas clapping and stay for an hour or two while I have to go to the Dr. Norah has always been a happy child from the day we got her. She has a way of putting a smile on the faces of people around her. Lori and I have said many times that we thought that until she can feel safe enough to let her guard down her language development will suffer (Maslows Hierachy of Needs). We have seen a big improvement in her signing ability. It has started to blossom in the last month and we expect this next year she will have a language explosion. I didn’t want this one year update to be so long and if you have made it to this point and are still reading, thank you. I just wanted to give an accurate account of Norah’s first year with us, and the things we had to help her work through. I look forword to see what this next year brings.

One Year with Norah (part 3)

Shortly after our 6 month home study update Norah stopped having night terrors all together and would just sleep through the night, other then a quick trip to the bathroom. It is around this time that we also had a function that Lori and I need to attend without Norah for a couple of hours so Norah’s grandma and grandpa came over to watch her. Unfortunatley the function was at night and it still seemed to me that when the sun went down Norah was still on edge. If we needed to put our shoes on to go to our car she still wanted to go. So when we had to leave Norah with her grandma she cried for about 10 minuets then calmed down. This was just as upsetting to her grandma as it was to Norah. We hurried back from the function and told grandma the next time maybe they can come to our house to watch Norah, on Norah’s home turf. Then Norah would feel a little surer that we will return home.
She has gotten used to the fact that Lori and I will meet her needs of food and no longer holds food in her mouth. The girl that didn’t want anything to do with her first bath with us has become a water dog. She loves to swim and play in the water. Her signing reception is coming along and Lori and I are learning as fast as we can but we still find it hard to sign all the time to each other. She has more vowels in her babbling and can now pick out the difference between the ling sounds. She still has no patience for listing more then a couple of minuets at a time. She still has a long long way to go before speaking. At about this time she has also started testing Lori and I like any kid would, to see if she can missbehave and get away with it, and what Lori and I would do if she was bad. While we are lax parents we do want our kids to respect us, so Norah gets put in time out if she misbehaves with us right by her side. We had to get our bluff in that throwing a fit at the store because you want something is not going to get you that item. This seems to be working and boundaries don’t seem to be an issue with Norah. The more she relaxes the brighter her spirit shines. One thing that we have noticed at this time is Norah is starting to develop an imagination with her play. We have modeled imagination play with her and she is catching on to this type of new fun thing in her life. She also loves to get dressed up in pretty clothes and shoes and has her own sense of style. We can tell that me having to stay home was the best thing for Norah…..

Tuesday, March 16, 2010

One Year with Norah (part two)

So in preparation for Lori returning to work we contacted the daycare that our 18 year old son had attended. They had an opening and Lori started taking Norah to daycare a couple of hours a day and staying with her to get her used to the daycare workers and kids there. This payed off and she was happy to go and play with the other kids.
Lori went back to work and I was still doing drywall at the time, so I would take the day off to take Norah to doctor appointments and for speech therapy. One of these appointments was for her cardiology workup, where her cardiologist said to consider her heart "normal". What a relief. My back started to get worse and I was having a hard time getting through the days at work, so I started working half days in hopes my back would get better. It didn’t and I ended up having to stop doing drywall because the pain in my back wasn’t getting better and was in fact getting worse. An MRI and CT scan confirmed what we had already known and feared, so now I was back to seeing Dr.s for the third time in six or seven years to try to fix me yet again.
On the plus side I have gotten to spend a lot of time with Norah. I was able to be home with her after her CI operation and to work with her in the mornings on listening. She has grown so attached to me because of it. It is really nice to see something so good come from something so painful.

Norah had her first CI activated in September 2009. At the first activation she could hear sound (it is in the you tube video). We didn’t know how much, but she could hear something and that was good. I practiced with her in the mornings and then about 6 weeks post activation she could not hear as well. So we did a test in the hearing booth and she got to 50-60 DB range. We were almost having to yell to get her to respond to the ling sounds or even to get her to acknowledge she heard her name. I was getting worried that she was at a platue because she was just about as high as they could turn her up on her map for her CI. So Children’s Hospital got the people from Cochlear to come help with her map and we went home with a new one ready to practice again. Within a matter of days I could see an improvement at home. She could all of a sudden hear a whisper. So we returned for another hearing test, this time 35-40 DB then a month later 30-35 DB across the board. That was her last test and her hearing has gotten better, so I look forward to her next test in the booth. Even with having Norah activated and in a good map, she still won't come to her name if called however she will acknowledge that she has been called by looking up at you so she can see you sign. She is also starting to make new sounds with her voice. She is still having the occasional nightmare but nothing like the night terrors that she experienced at first. She still thinks Lori is the cats meow but all my hard work is paying off. I am growing on her, and am no longer seen by her as competition for Lori's love and time. When I sign to Norah that I love her she signs back to me no no no. I am not sure that she knows what the sign means but I am sure she gets it on some level. This whole time she has been loving and affectionate with Lori and I but is still on edge. If we are in the living room she was always watching us to see what we are doing, if she sees one of us is putting on our shoes or if Lori grabs her purse she will get upset and want her shoes on so there are signs that we can see still at the 6 month period that she is still on edge and is not totally bonded and secure in the fact that we and she are here to stay. It makes perfect sense to booth of us because she had spent about this much time with her foster mom and dad in China before we showed up to change her world. I know she is growing fond of us. I can see it in her eyes, but still I don’t think she trusted us totally at this point, that all the good times she has been having with Lori and I are forever. I don’t think she knows we are her forever family after being moved around so much or if she even understands what a family is. After having her home for 6 months I can see it must have been very hard on her foster mom to say goodbye. I know with continued love, time and patience she will see how much she is loved and we and she are not going anywhere. It will be nice to see that day, when she will wake up in the morning and not be afraid just because mom and I are not in the room with her. We are having the best time with Norah her personality is coming out more and more and we know she still holds some underlying fear that this will end. Now we have been home a full six months and just had our update with the social worker……

Saturday, March 13, 2010

One Year with Norah (Part one)

After I got to typing I realized that this is going to take a couple of post to get through. I don‘t know how many, I just wanted to let you know where Norah, Lori and I started from to see how far she has come.

A year already?

It has been one year since we came home from China with Norah. Norah has come so far. When we got her in China she was profoundly deaf, and didn’t have a clue what was about to take place in her life. She was carried through the door of the civil affairs office and we recognized her right away. Norah, Lori and I played and played for 20 minuets while all of the other families in the room also played with their children and asked questions. Norah was laughing, giggling, and we were feeding each other cheerios. All was well and then it was time to go. I don’t know exactly how to describe Norah’s reaction to the next thirty minuets to make you understand just how upset she was when we left the room. She kicked, flailed, and screamed and cried, anything she could to try to get away from Lori and me. This lasted through the walk to the photo lab for the required adoption photo, all the way back to the street across from the hotel (I think it was about 30 minuets but I am not sure time seemed to stand still). Finally exhausted she calmed down enough to let Lori set her down. ( Let me add here that Norah had NO idea who we were. She had not received her care package that had pictures of us in it along with treats and toys. We were just these strange people with cheerios that were running off with her and her nanny from the orphanage was letting them. It had to be horrifying for her. So her reaction was totally justified.)

We stopped by the water fountain outside the hotel to let her see it and to give her more time to calm down, then Lori and Norah walked hand in hand into the hotel looking like they had done it a hundred times before.

Over the remaining time in China Norah would cling to Lori. If we were outside walking somewhere she would not let Lori put her down. This went on for the next 3 days, at the time she weighed 29 pounds. I would try to carry her but if Lori was around I was Norah’s second choice and she would not let me carry her. She would play with me, let me feed her and do all the things a parent has to do for their child. Norah was in survival mode. If we were out to dinner and Lori got up from the table Norah had to go with her. She was not going to let yet another caregiver get away that easy.

From day one we started teaching Norah sign language and this helped the situation. She could now communicate some of her basic needs with Lori and I. She really seemed to love the fact that she could ask for diffent things with different hand movements and get them.
During our time in China with Norah it was wonderful to see her starting to accept Lori and I as her new caregivers and painful to see her in times of great grief. She had night terrors where she would would be screaming, all kinds of pissed off and you just had to let her be until she was finished and either woke up enough to want to be comforted or fell back asleep all the way. We got some really good advice from one of the other families that were adopting for the second time in China. When the child is having a night terror touching them or trying to comfort them just prolongs the event and even makes it worse. Norah is such a strong person that the moments she would let herself greive didn’t last long. I Use the word caregivers because Norah has been moved around so many times in her short life that I don’t think she knew what parents were. She simply had different people in different places that provided for her in one way or another before we came along. I have a strong feeling that her foster family thought the world of her even though she was only with them for 6 months. It is obvious by her ability to open up and allow herself to care for us and to allow us to show her affection that she ran across some really great people in all of that moving around she did.

After returning from China Norah and Lori stayed home for the first three months, while I went back to work.

Norah became ever more attached to Lori, to the point that if we all went to the store together and I got Norah out of the carseat she would immediately start reaching for Lori and I could not carry her. This was kind of hurtful to me but I understood that she was still in survival mode and Lori was her crutch. After sometime Norah started to get possesive of Lori. I was not allowed to hug Lori or sit by her on the couch. Norah thought Lori was going to be all hers all the time and I better get that through my head. All this time I was still a good playmate and caregiver for Norah, she just wanted Lori all to herself.
Well, that was not going to work. It was wearing Lori down and was not helping Norah and I form a real attachment. So I would start taking Norah to the park, the store, outside anywhere we could be together one on one, and it slowly started to work. She would scream and cry when we would leave the house and call for mama, but once we were a couple of blocks away, it was like ok daddy where are we going today? Within a couple of weeks I could leave with her without her crying at all but if Lori was around at all I was still playing second fiddle.

By this time we had had her hearing tested and confirmed that she was profoundly deaf. Norah was fitted with hearing aids that gave her access to some loud sounds but not high pitched sounds. It put her in the 50-60 DB range. She had also learned quite a bit of sign by now AND it was time for Lori to go back to work from her time off on FMLA.

Saturday, March 06, 2010

Impromptu photo shoot


Norah wanted to wear her dress this morning and after helping her get it on I went into the living room. Soon Norah emerged wearing pearls and a ring and sunglasses. I asked her if she wanted me to take her picture. She said yes, so I found a black sheet, tacked it up and shot some quick photos. It was after I was finished and put them in the computer that I realized black is not the best choice for Norah, her hair disappears into the back ground. We will have to play with a different colored back grounds to see if we can get a better result. I need to write a post about our first year with Norah. The one year anniversary of the day Norah came into our lives and became part of our family is just one day away. I have been neglecting the blog the last couple of weeks, which I don’t like because it helps me rember things. When I look back on old post or photos I have posted of us, it is nice to see my thoughts at that point and time. To look at the photos I took of Norah yesterday next to the one of the pictures from the first week she was with us is amazing to me.

Photobucket Surley she is not the only four year old with her own string of actual pearls.