Nursery Rhyme Heart Ache.

Most parents look forward to their children's school programs. They are excited to see their children singing and showing off with their friends, and proud of them and maybe a little emotional seeing them growing up. Not me. I have been dreading this day and days like it since Lani was in the NICU. I remember vividly looking to the future to moments like this when I first learned Lani was deaf. I remember thinking what is going to happen when she goes to school? Will she be included? Will other kids know how to communicate and play with her? What is going to happen in school programs? Is she going to be stuck in the back being silent and staring blankly while everyone else sings their songs? Today I got to see exactly what happens. Today was Lani's first school program. It was a program that her preschool class put on for parents for the end of the year. It was exactly like I imagined it would be four years ago when I first thought about it. Lani was stuck in the back looking completely confused because nobody took the time to sign and explain to her what was going on. All the other kids were singing proudly for their parents and Lani stood there. She looked confused and nervous. She had no idea what was going on. My heart sank a little. I sat there trying to hold back tears as I watched her look helpless and confused while all the other parents were laughing and watching their kids sing their songs and dance. They ended the day showing a slideshow of pictures from throughout the year. I thought to myself, ok, at least the singing is over, I got through the hard part of watching her feel excluded. I was wrong. I watched as they showed pictures of the kids laughing and playing together, making crafts, and playing games. I waited to see more pictures of Lani. The only pictures I saw were ones of Lani playing by herself, like always. Exluded again. Even the pictures with her and other children you could tell she is still playing by herself. It's days like today that make me hate disabilities. It makes me hate that Lani has to work so hard to do the smallest things that everyone else takes for granted. Today my heart aches. I long to see the day where Lani has a playdate with a friend. I long for the day where Lani tries to play with other kids and they don't just walk away from her because she can't talk and run around as fast as them. I long for the day where I get excited seeing her in a school program or play and I don't leave feeling broken hearted for my daughter who is once again exluded, whether it was intentional or not. Will that day ever come? I sure hope so. But today my heart aches.

Life....2 years later ;)

Clearly I have been slacking on the updates, it's been two years ;) I honestly don't have time for anything right now, and so much has changed. I'm not even sure where to begin.

Lani is 3 and a half now, and her CIs just started responding 9 months ago. We don't know why they didn't work before, and we don't know why they started working suddenly, but I'll take it! She can now hear speech sounds and with very intensive speech therapy is starting to babble and make speech sounds. Her SLP thinks she will have words soon. I'm very excited about this! I had come to terms with the fact that Lani is profoundly deaf, she will never hear me, I will never hear the words "mama" or "dada" or "I love you" come out of her mouth, but now it seems like that might be a reality!

Her sign langauge skills are still lacking severely. She is receptive to sign but cannot express them herself. She has about 5 signs she can do, but doesn't unless you do them first and then she will immitate. Communication is very frustrating right now and she is having more and more meltdowns. I'm hoping these will start to resolve soon as she is able to hear more and able to do more ASL. Her fine motor skills are still not where they need to be which is one of the problems with her signing.

Other big news.......LANI IS WALKING!!! All by herself! I never thought I would see the day. She started walking a month before she turned three, and now I can't stop her and she will just keep walking all day long, and I'm ok with that! She still wears SMOs to support her ankles and she still has low tone, vestibular problems, and very poor balance and depth perception, but she is determined and she is doing it!

Something else has happened in the last two years. Lani became a big sister to Cambria Mahala who was born on March 25th, 2011. She is now 18 months old, and that seems insane to me! I am so out of my element with a "typical" baby. I have no idea what's  normal and what's not. She was able to sit up at 5 months old and Robert and I thought she was some kind of super baby because no baby should be sitting up that early! We were told by family that she is no super baby, and that she is at the right age to be doing that. Who knew?! Something else that she is doing (besides walking at a year old which also seems crazy to us!) is talking and signing herself. I'm not sure if I will ever be used to having a child that can talk to me, that can hear me, and that can understand what I am saying and follow simple commands. Robert and I seriously have conversations debating if that is typical development or if she is a genius....some may disagree but we prefer to think she is a genius. :)

Lani does not do well at all with her sister, and hasn't wanted anything to do with her since the day she was born. She is now very aggressive towards her, she will kick her, push her down, slam her head into the cabinets and more and we are not sure what to do about it. I feel like we have tried everything and poor Cambria is scared to death of her sister and just wants to play with her. We should have a consult soon with a psychologist at childserve who will hopefully have some ideas. Some days I am honestly afraid that Cambria will get hurt really badly.

Lani has also started school this year and is having a really rough time. She seems to like going but we are having a lot of issues with the school and with her being included and we are looking to switch her into Capital View's Deaf Ed Program. Hopefully we can get her in so she can be around other kids who are similar to her.

On top of the school and all of the appointments Lani goes to Childserve 3 times a week and once a month 4 times a week. She does PT, OT, and speech 3 times a week. Once a month she also does aquatherapy and she loves it there! I cannot say enough about how amazing Childserve has been for her and how glad I am that we started going. She is also now in the Dance Without Limits ballet and tap class at Ballet Des Moines. It is a program for children with special needs who will not be judged or kicked out because they are not doing what they are supposed to. So far she loves it but she has some trouble with her attention. But hey she's 3. :)
That is our update for now! Hopefully I will be better at posting things.
-Heather

Summer update

The summer has been really busy and I haven't had time or energy to do any updates! We did find out one thing recently, Lani is going to be a big sister! We couldn't be more excited! Baby #2 will be born a month before Lani turns 2. So we will be busy!!!
We have still been making the journey to Iowa City every two weeks for audiology appointments. At the last one they sedated Lani and did a CT scan to make sure the implants were in the right place--they are. They also did another ABR while she was out. They only had time to do it on her right side. They were getting nerve response on the ABR. However, the level was so high that they don't think Lani would be able to process speach sounds. They want us to try the CIs for a year and see if anything improves. They know the left ear has hardly anything. Not very excited about this update. I just want to know which way we are going-signs or CIs. Plus I hate fighting Lani to wear them when they don't do anything for her! But I guess we will keep trying. I did manage to make a cute headband that helps to keep them on:

Update on CIs

Well we went back to Iowa City today for another mapping. We went from 25 pulse width to 300. BIG jump. They said it is very rare that they turn them up that soon. The highest they can go is 400 so if we don't see anything at 300 within a week we go back for an X-Ray to make sure the implants are still in the correct spot. If they are then we can move it up a little more and if there is still no response than that's it. However they did think they got more of a nerve response today from the right side, still nothing on the left. But it's a start. They also said that they have had kids before who have taken a couple weeks to show a nerve response because it is so new their brain doesn't know how to process it. For those kids it ended up working fine and they are really benefiting frrom their implants so hopefully this is the case with Lanibug as well. That is about the only update we have. Still no definite answers but its a start.

Summer!

We have been having a blast this summer! Lani is getting bigger (and I mean heavier) every day! I cannot wait until she can crawl so I don't have to lug her around everywhere! And she absolutely LOVES the water! She never wants to get out of the pool. Even the big pool she will just swim around with me for hours if I let her. We go back this thursday to Iowa City for another mapping of her CIs. Hopefully we at least get some answers this time. I contacted Cochlear to see if they would send a rep out but have not heard back from them yet. I would just like to know which direction we are going so I can do what I need to do. On a brighter note, the ASL I took in college is starting to come back to me now that I am trying to use it more. Now I just need to learn how to sign in sentences again! 

Our 1st blog!

Well, Lani is 14 almost 15 months old so a lot has happened! I can't beleive she is over a year old now! Here is a couple birthday pictures.





She is still undiagnosed and nobody can tell us anything. She did have a major accomplishment last month. She learned to sit up all by herself! We are so proud of her. Now she just needs to learn to crawl : )  Lani got bilateral cochlear implants on June 4th. The surgery went perfectly, recovery did not. Poor baby was puking up blood everywhere and we almost didn't get discharged. But we did go home and the next day she was fine. Here are some before and after pics.







After surgery they did tell us that there was no auditory nerve response but that is sometimes normal and not to worry. We would see if they worked on activation day. Activation was June 30th and still no nerve response :( We go back on the 15th to test them again but they are probably not going to work. So huge bummer. I'm ok with her being deaf and never being able to hear, it's putting her through surgery for nothing that bugs me.
Well this is a pretty long post for our first one so I think I will be done for now. Just an update on where we are!