Learning and growing like a weed.

Hello everyone, I've been meaning to update this for awhile now but I am keeping busy trying to keep my little one out of trouble! She is completely mobile and since she has learned to sit herself up from the floor she is into everything. She is growing and learning so much these days. She has an ever increasing vocabulary which makes us careful what we say. She is signing and getting really good about communicating with us. She makes us laugh. Her favorite words are a tie between "HI" and "daddy". She loves people and loves to greet them with hi but only after hiding behind her arms for a few minutes.
The newest trick she is working on mastering is a pull to stand. The therapist said she should be able to do that in the next couple weeks so we are working extremely hard. Our PT (who we love) said that Kara is her hardest worker. :-) Makes mommy swell with pride :).
Matt and I couldn't be prouder of our sweet little pumpkin and it is impossible to not fall in love with her. This week mommy and baby are enjoying some family time in MI.
Our cup runs over with blessings. Praising God for his greatness and thanking him for our continued blessing. Take some time this season to thank God for coming to save us and remember all the blessing he has given us that we don't deserve.

My blessings. Ignore the Justin Bieber backgroud. We jut can't get enough Bieber ;) Just kidding it was actually a tacky Christmas party that was super fun!
Merry Christmas to all and wishing you a life as happy as mine is right now!

Hello Everyone, thanks for continuing to read this. A couple things on my mind today. First of all Therapy. Kara has now qualified for Occupational Therapy and Speech Therapy. This is on top of her regular Early Interventionist visits as well as Physical Therapy.  As her mother, I am getting a little overwhelmed. She is 16 months old, does she really need 4 hours of therapy a week? Physical Therapy we are keeping for sure. She really does need Physical Therapy. We don't really have an option on the Early Interventionist but we are keeping her too. Now the new ones are OT (occupational) and ST (speech).  The Speech Therapist told me that she should be saying 50 words by 18 month and putting two words together. Now Kara is only 16 months but she certainly does not have an extensive vocabulary. To me 50 words seems a little on the excessive side for normal children. The question I am running into though is: is she a little behind but will catch up and start speaking when she is ready? or is it: She is a little behind because of the Dandy Walker Syndrome and needs Speech Therapy?  Matt and I have always tried to get her the help she can use but I am beginning to feel as if it is taking over our lives. I still want her to be a normal child and do the normal child things. It is hard to do that when you have therapy. Kids are resilient though and take on what ever you give them (well at least Kara is). Something my speech therapist said to me though that has stuck is: Kara will be fine with what ever you give her, but if you (speaking of me) is overwhelmed it will be a detriment to her. She is right as always. So here is the question: am I ready to take on 4 hours of  people coming into my home a week. The other option is to break them up some and have speech or OT once a month or once every two weeks. Then of course I have the option of not taking them all on right now just taking on what I think she needs. Lots of decisions to make and just wanting to do what is best for my baby girl.
The other thing on my mind. I was looking at support groups on line for Dandy Walker Syndrome and stumbled across a site that was a support group for terminated pregnancy from medical diagnosis. I scanned through about ten posts and was shocked that over half of them had terminated their pregnancy due to a diagnosis of Dandy Walker Syndrome and even more shocked about how little they knew about it before making the decision. Dandy Walker is not a well known condition, only 1 in every 25,000 children are diagnosed with it and so many pregnancies are terminated due to it that there isn't much known about it at all. We were advised before we adopted Kara to talk to someone who knows about it and the resources available. We decided to take Kara anyway, and we talked to a neurosurgeon afterwards. There is a chance at a normal life for these kids. Even if there isn't, they aren't suffering. So many parents say they wanted the baby but they didn't really. They wanted a perfect child and there are no perfect children. It just broke my heart to hear these ladies say that they did this out of love for the child. If they really loved the child why didn't they get more information and give this child a chance at life. It was so heartbreaking to think about all these children who are just like my child who could have made this world a better place. Once again I just give thanks to God that Kara's birth parents loved her enough to give her a chance at life. I also thank God that I have the opportunity to be her mother. I just pray that there is something I can do to help educate people that terminating their pregnancy isn't the only option. As long as you love that child more than yourself you can do this. Anyway, that is the burden of my heart today. How to educate people on the options these children have. Look at my child and pray for the mother's trying to decide what to do with their child's diagnosis. Pray that the choose life and give their children a chance.

   

I know this is a little late but as of September 19th (also known as Talk Like a Pirate Day) Kara has legally been Kara Anne Verley. Her court case was September 19th of last year. We as always, are incredibly grateful for the opportunity to be her parents.
The last few months have been busy with therapy but surprisingly few doctor visits. She is the healthiest she has ever been in her life and we are so very thankful for that. Her therapy is going well. We are working hard on getting her mobile and standing. I have had a little tough time lately, just feeling tired of exercises and eye patches and all the things I had down to a routine for her. I am trying to not to get discouraged and remember in the long run it will pay off. For now I am just thankful that God has provided so much to help my daughter become the person she is meant to be. So if I have to patch her eyes and work (play) with her in specific ways to develop skills that she needs in life, I will do it.
We are enjoying going to a program called bouncing babies at the library. There is singing and dancing and stories and she loves it. It is also helping her become more social with other kids. She went through a stage where other kids scared her but she would make friends with any adult. This is helping her get used to playing with other children.
We now have 13 teeth. 3 of those being molars and 2 eye teeth. It has been rough going. As long as we keep her amber necklace and give her teething tablets as needed, her sunny personality still shines through. She loves to be silly and has started doing a little high pitched screech while playing that drives daddy crazy. We are working on that.
She is a great kid and very loved. We appreciate all who have helped get us here. We couldn't get here without all the prayer support. Giving Glory to the Most High God and thanking him for this wonderful gift!

so she's one!

Yes, Kara has made it through the first year of life. The odds were against her at birth but she is a fighter! We had some bumps along the road but she just kept going. Such little trooper. Now she is sweet, happy, and healthy. We are so thankful for our time with her and look forward to celebrating her Gotcha day in a couple of weeks. Thank you for all of you have prayed us through this year. We are so thankful for a healthy baby. God has been so good to us and carried us through lots of battles. We don't know what the future holds but we know that he will always be there with us. Praying for her future, that she will love God and seek to glorify him with the life he has given her. She is going to have an awesome testimony of the goodness of God!
Here are some pics from her birthday:

Moving and Shaking!

Just wanted to give everyone a quick update on Kara's improvements in therapy. She can now sit up straight. She can retrieve toys from the sides and front and return back to a normal sitting position. We are very proud. She can also lift her head and chest off the floor while on her tummy. This is a big deal because next week she will be learning to pivot to get toys in this position. After that comes Army Crawling. Yes, our child will soon be mobile. We are so proud of her and how far she has come. She has been working so hard during our exercising and she has improved dramatically lately.
Yesterday, I was watching her eat her lunch, she picked up her sippy cup and took a drink. It made me happy and sad all at the same time. Happy because she is learning and growing. Sad because my baby isn't going to be a baby much longer. I can't thank God enough for allowing me to be her mommy. She is such a blessing to us and I can't imagine life without her.

Physical Therapy and other things

When you hear special needs something comes to mind. It is different for everyone. I want to help clarify Kara's form of special needs. We were informed before we got her that Kara had Hydrocephalus and Dandy Walker Syndrome. We hadn't heard of either of those things and we had no idea what either of those things were. The internet wasn't the greatest place to get our information we discovered quickly. When we sat down with the doctor he first explained Hydrocephalus. Now I will explain it here: Hydrocephalus is water on the brain, or more accurately spinal fluid on the brain. Her body produces excess spinal fluid which puts pressure on the brain. Left untreated it could have very damaging effects. Kara had a shunt put in the week she was born. Complications come in when the shunt quits working or becomes infected. Kara's shunt wasn't allowing enough fluid to flow so in October she had the shunt revised. Then she got an infection in her spinal fluid and we had to do a whole replacement. Since then it has been working fine. As long as her shunt continues to work, she will have it for her whole lifetime.
Now Dandy Walker Syndrome. Dandy Walker Syndrome involves the Vermis in the back of the brain. Dr.Troup (Kara's neurosurgeon) told us that he could cut our Vermis out and it wouldn't make a difference. The job of the Vermis is to help make connections in the brain. It also helps with balance and such things. We asked him if we could tell how challenged she would be. He couldn't tell us. He said you could take two identical cat scans and one of them would be severely disabled the other the top of the class. There is no way to know until they start meeting milestones. So this is where we started to realize we were taking a risk. It didn't matter though we love Kara the way she is.
So now I want to explain what we have done to help her reach her potential. We got connected with Babynet when she was 3 months old. The are essentially free program, they bill our insurance and whatever the insurance doesn't pay Babynet pays. Virginia, our early interventionist, comes to our house once a week. Kara loves her because she knows she is coming to play. Virginia is our overseer kind of. She is watching and seeing the areas Kara needs assistance in. The plainly obvious one was her Gross Motor Skills. Virginia's job then was to get her hooked up with a physical therapist. Our Physical Therapist is Beth, and I love her. She has done wonders with Kara. Beth comes to our home every Friday and she works with Kara on sitting up, rolling over, and putting pressure on her legs. Kara has made wonderful strides since Beth came into our lives. She sets goals and gives us practical exercises to help get Kara where we want her to be.
Kara had an assessment last week. The categories were Person Social, Self-Help, Cognition, Communication, Fine Motor, and Gross Motor. Any child her age tested may be behind a little here or a little there as Kara was. To stay in Babynet she had to have at least a 16% deficiency in a category. The only one that had a deficiency over was Gross Motor Skills. The cause for that was the large size of her head. We were overjoyed to see that. As I said in a previous post, the doctor said she is growing into that "noggin" of hers now. Which will make her gross motor skills improve.
So cognitively she is doing great. I know I used to think "special needs" always meant severely handicapped. I learned that it doesn't mean that. In our case it is the sweetest, happiest baby, who just needs a little help to reach her potential. I have no doubt that she will do great things for God!
I am always open to questions if you have any :)

Infant Attachment

 A friend has inquired about infant attachment issues related to adoption and I wanted to share my thoughts. The surprising thing is it isn't instant. I can't tell you how many people say "it was an instant attachment right away, right?" You feel a mother's love instantly and you would do anything to protect that child. Attachment takes more time. Our Homestudy social worker, instructed us to take a couple days to bond with the baby before the family comes to visit. We picked her up on Saturday and no family came to visit till Tuesday. Then for about 2 weeks straight we had visitors. After they all left it was just me and Kara while Matt worked. I felt very much like I was floundering. I didn't know what she wanted when she cried. I didn't know what to do when she wouldn't sleep. I knew that I loved her but that was about the only thing I was sure about. As I spent more time with her, I learned what her cries meant. I learned what she needed when. I started to build that connection. I knew I could take care of her and she trusted me to do it. It took a good week of just the two of us to attach. Matt took a little longer. He was at work all day so he only had the evenings to build that connection. The first couple weeks I could tell he didn't know what to do and I did. I realized though if I took care of her every time she got upset he wouldn't build that connection. That is where the mother needs to step back and let daddy figure it out. That is when they connected.
The only other thing I would say for adopting an infant is something my mother-in-law told me. Don't be afraid to hold the baby. A friend of hers had adopted two infants. She said the only thing she would have done different was to hold them more. They had severe separation anxiety, and holding them would have made a difference.

Good News

Kara has some good news to share with everyone. We were at Dr.Troup's office yesterday. First of all, her head has stopped growing. That is great news because it means the shunt is doing its job and she will finally grow into her noggin (as the doctor put it). Second of all, her EEG results were completely normal. That means no seizures or any irregularities. We do have a problem with her stiffening up her little body and grunting which was concerning and led to the EEG. When I explained it to Dr.Troup, he said it sounds more like Acid Reflux. She has already been diagnosed with it to explain all the spitting up. I am going to mention it to her pediatrician to see if she can get some relief. Acid Reflux is a lot easier to deal with than seizures though. Thank you to everyone one who has been praying for her. She is healthy and happy and such a little miracle. We are so blessed!

So Tired

Lately I have been struggling with what I call the winter blues. Just need to get out of the house, trying to exercise regularly, and eat right. Just when I thought I was getting it under control Kara was exposed to the chicken pox. I panicked a little at first, but the pediatrician didn't seem concerned so neither was I. Kara had a cold last week and that is ok she gets colds from time to time. Then yesterday, I was holding her and I could feel a little rattle in her chest. She started coughing and I could hear her breathing. Concerned I made a bunch of calls till I finally was able to talk to a nurse and get her in to see the doctor today. She had a definite wheeze going. Since Matt has Asthma, I had heard what a wheeze sounds like. The doctor listened to her lungs and said she is wheezing and has a respiratory disease in the family of RSV. So they put her on regular breathing treatments and she is going back tomorrow to see the doctor again. When I got home from the doctor's, I was thinking about the fact that I am monitoring my child for signs of the chicken pox, while treating her every 4 hours round the clock for a respiratory problem. I realized that I am tired. Not the need to crawl in bed and sleep a few hours tired. The tired that comes when you feel like you just can't quite get your feet under you. When you are being hit over and over. Then I realized why I was so tired. I was trying to do it all myself. I was trying to use my strength and God was there knocking my feet out from under me trying to get me to rely on him. So I took a minute and said "God I am tired, so tired. I have been trying to do it all in my own strength and my own power. Now I am powerless and I need your grace." The relief I felt was immense. While doing Kara's breathing treatment tonight I realized I no longer feel that powerless feeling. I feel like I can deal with this. My baby girl is going to get better and with the grace of God we will get through this.
So I learned this week, that when life is getting me down I don't need a vacation or a nap. I just need to rely on God. Apart from him I can do nothing (believe me I've tried). In the end I can be thankful that I have my sweet baby girl. I want to be the best mom I can be and the only way I can achieve that is by the Grace of God.  

Kara is still doing great! Healthy and healing well. She keeps us plenty busy! Kara and I flew to Michigan to see her grandparents from Christmas day afternoon to New Years day.  She did great on the planes. For both long plane rides (there and back) she slept. For both short ones, she talked and played and kicked the people sitting next to me. We had a rough time on the flight home but who doesn't have an unhappy airport story. Anyway, we are home and getting back to routine now.
Kara had a wonderful Christmas. She was spoiled rotten by family. Lots and lots of toys. Matt and I are beginning to realize that all toys for her age sing and sing and sing. She also got some clothes and her two front teeth (literally) :) She most enjoyed spending time with her grandparents, great-grandparents, and aunts and uncles.
Kara had a CT scan yesterday to get a new basis for what her head should be. We carry her head scan with us in case her shunt were to stop working while we are out of town. It gives the doctor a basis for what her head should look like. Dr.Troup advised us to always carry it because if that scenario were to happen the doctor would kiss us for having it :) She did so great for her scan. She was smiley and sweet all morning. She laid still and never so much as coughed throughout the whole thing. She just looked at me and the fish pictures they have in the room. We went to Troup's office next and he checked the scan. He saw nothing to concern him and wants to see her again in two months assuming there is no problem. We have been a little concerned about staring spells Kara has been having so he referred us to a neurologist. So one more doctor to add to our list of doctors appointments. Honestly, I love scheduling and preparing and arranging appointments. The organization it takes delights me. I am also keeping a journal of Kara's health and am weirdly excited about it. I know I'm a nerd :)
Kara is meeting semi-regularly with a physical therapist. She will get a more regular schedule starting this month. We are beginning to think the therapist is a miracle worker. It took two visits and Kara now has full head control!!!! We are so proud of her she works so hard. She also rolls from side to side and reaches for her toys. We are now working on sitting up and weight bearing on her legs. At six months she is very close to where she needs to be physically. Cognitively we have no worries. The physical therapist is going to help her get where she needs and we are so thankful for her!
Kara is gaining weight and height and getting so big. She no longer looks like the scrawny baby she used to be. She is still beautiful and sweet though. We get comments about it wherever we go. Her hair is also getting long. We have done and couple ponytails.

We are so thankful for all our friends and family who care for Kara. We love our little angel! Thank you everyone for the thoughts, prayers, and kind words.