Hurdle jumping

Tomorrow is a big day. We have Brooklynns neurosurgery appointment and brain MRI. This is to follow up her mild ventriculomegaly. But this time my nerves are a little more because now we have a new diagnosis. We have a diagnosis that goes along with tumors. And so that adds a whole new level of being scared. So tomorrow I am praying that growths are not seen on her scan. And I am curious to see hat Dr. H says about follow up now that we have an explanation for her enlarged head. I am hoping we will be cleared from this specialist but I am afraid.

So tomorrow we will be jumping over one more hurdle. The problem is that I feel like we are on a track with hurdles all the way around. So when we get over one there is another one right around the corner. I just pray that we will clear the hurdle. That there is not something that pops up that we are not expecting. But I know this is our life from here on out. I will never be able to relax with any appointment. I will be fearful with every test or every scan that something will pop up out of no where.

And we will get over this hurdle and we will have another coming next week with our IEP meeting. And than next month is her developmental appointment. So one hurdle (or day at a time) seems to be getting a little harder knowing that there seems to be no end of appointments, specialists, and testing. Deep breath.

Darn Internet....

So I have to vent. I hate the internet. Okay I really don't hate the internet - I love the internet. I love that there is up to date information that is always at your finger tips. That you can find out results of new research studies going on. That you can find others going through your same situation. But I hate the anxiety I feel when I find this new information. Because quite frankly - the new information that is being discovered about PTEN Hamartoma Tumor Syndrome is not any better information than before. It is actually worse. Every time I read a research article, the rate of breast cancer goes up (originally it was 25%, than 50%, and now it is up to 85% lifetime risk of breast cancer in your lifetime).

I hate that I find a blog about a mom going through the new diagnosis that she and her daughter (who is 9) and what it entails, both physically and mentally. And her thoughts of anger and sadness resonate with me. The fact that her daughter has to live with what this means, that as she gets older and asks more questions, it scares the mom that she has to report these. I know that every case is different. I know that some people deal with mild symptoms, but than there are others who struggle with the risk of cancer, and the diagnosis of cancer, every day. And i worry because my test results are not back yet. And if they come back, they are finding more people are being diagnosed with this mutation with breast cancer earlier (some women as early as 25 years). That there are women who chose bilateral masectomy and after they do this they find cancer in their breasts. I am fearful of if my test comes back positive, what this will mean. I try not to worry (I am told to not worry about things that I don't know the answers to, but I feel like this is going to be my life forever).

So now I am struggling again. I am anxious. I am nervous. And it is always when I am not with my kids or my husband. When I have time to think about the what ifs. And when I read these blogs and it feels like the person blogging is me. (Besides all the medical issues that her and her child are facing currently). And than I worry - my child is almost 3, her child is 9. We have a lot of time between now and than to start experiencing some of the same things. I pray we don't, but I am trying to prepare for if we do. And it is a constant struggle in my brain. So please bear with me if some days I just seem out of it. If some days, I look like I might start crying. Or if some days I just am plain grumpy. This is a lot harder than I thought it would be...

The Day of Processing...

So yesterday was a day of getting information. Today is a day of processing. I dwell on things, I know I do and that is a weakness (sometimes a strength) of mine. I overanalyze, and usually after I over analyze, I come back to the ground and am able to function. But for the first couple days after I hear information, I usually am in my own world. So to those who are around during those days, I apologize. I go from being happy, to being sad, to being nervous, to being angry, to being okay. My mind races, my heart hurts, and than I am better once I lay eyes again on my kids and get the hug and kiss I have needed all day.

But today, right now, I am an absolute wreck. I am trying hard to process this information. I am trying really hard to be okay with this information. But I am also trying to accept everything for what it is. Now, don't get me wrong, I completely, 100% accept and love my child. No matter what I hear about her or what struggles we get, I never struggle with her. I struggle with the challenges she will be facing. With the kids who are just plain mean as she gets older. With the difficulties she is going to have to overcome. I struggle that I might not be strong enough for her. I may not be able to give her all she needs to be great in this world. I am devastated that I can not protect her.

I have to wonder, at what point do you say you have a child with "special needs"? At what point do you say it is okay to classify her as this, not to put her into a box, but to allow my mind and body the ability to give her the services that she might need. Is she a child with "special needs"? Is it okay for me to pick up the magazine that talks about just that - Raising a child with special needs? Am I allowed to do that? Or am I putting her into a bubble that she doesn't belong? I don't want anything she gets diagnoses with or evaluated for to define who she is. The developmental delays, trouble with socialization, autistic type behaviors, even the PTEN Hamartoma Tumor Syndrome is not WHO she is. It is the struggles she needs to overcome. It is a part of her, but it doesn't define her. She is full of energy, she is loving to her family, she is fun and adventerous, and full of animation. All in her own place, all in her own time. She can't be forced to do things, but when she wants to man she is so talented and so bright.

We are lucky we have the family we have. Such an amazing support system. We are so lucky that Izzy is such an amazing big sister. We are so lucky that Brooklynn is such an amazing little sister. They were born at the right time, in the right order. They complete our lives, they make things amazing.

But some days, the struggles we have are just a little overwhelming. The doctor's appointments, the diagnosis, the testing, the feelings, are just a little too much to handle. Some days, I wish I could just go to bed and just cuddle with my kids, or even just roll up in a ball. Some days, I feel like that is all that I need. But I can't. I must stay strong. I must not be selfish. And I have to realize all the positives we have in our lives. I mean, it is hard to struggle with these things when what you see of Brooklynn is so amazing, and she is so healthy. I am trying really hard to dismiss the "What ifs" that come into my head.

Some days I wonder if maybe I am just too weak. So many people deal with their own struggles and sometimes I wonder if I am just so absorbed in ours, but that they are really nothing compared to most people. We are dealing with some minor things, but eventually, when you have a lot of minor things, it gets a little overwhelming. And today, I am accepting that fact. Tomorrow, or even this afternoon, I hope I am stronger than I am right now.

Early Childhood Center Evaluation

Today we had our evaluation results from the public schools. It all was overwhelming, as always. It was all pretty much expected. But I must say it is pretty difficult when you see numbers placed next to your child's name to classify your child under certain levels. If you have been following along, Brooklynn will have to transition out of FirstSteps and into the school district when she turns 3. So we have been evaluated (and when I mean evaluated she had 13 total evaluations done). And today we were given all the results. Sam was able to take off for this meeting so he was there with me as well. Most of these paragraphs goes into depth about each evaluation, for an overall picture, skip down to the bottom if you don't feel like reading everything

So they look at her scores and see how many deviations below the average she is to see if she qualifies for services. If she is -1.5 for 2, or -2 for one area, she qualifies for services. Anything below 78 was -1.5, and I think anything below 70 was -2.0. This kind of is how they evaluate to see what she would need.

Good news is that her vision and hearing are good - which we knew due to having those evaluated prior. They evaluated her Adaptive Behavior, using the Battelle Developmental Inventory. They evaluate 5 domains. Adaptive domain measures her self-care (she scored in the 1st percentile) and personal responsibility (she scored in the 25th percentile). Between these two, her developmental quotient was 80, so while she was slightly below average, this does not qualify her in of itself.

Her Academic Performance is more of cognitive. They use the same Battelle Developmental Inventory for this. Her attention and memory (scored in 1st percentile) was at an age equivelant of a 1 year 3 month old, her reasoning and academic (scored in the 2nd percentile) were <2 years, and her perception and concepts (scored in 1st percentile) was ranged with a 1 year 4 month old. This placed her at a developmental quotient of 64 (-2 deviations below the normal). She demonstrates a short attention span and lack of impulse control which made it difficult to test some things. She has a hard time with answering questions or following verbal directions, and does not really look towards the person speaking to her.

We also did her social and emotional status. They did multiple evaluations to determine her status on this, but the first one was the Battelle Developmental Inventory. She did okay with the adult interaction (scored in 5th percentile), but she has trouble with peer interaction (scored in <1st percentile). They also look at her self-concept and social role (scored in 1st percentile). So all of these three combined, she scored a 74 (4th percentile) (so -1.5 deviation). They also looked at an Autism rating, which I will talk about in a bit.

Communication status, she was evaluated for her speech. Amazingly, this was one of her highest scores and this is one of the therapies we get through Firststeps. Her total language score (or the words that she understands and speaks) was 82 - so average. (12th percentile). Her articulation score was a little lower (not 100% scored because she was not cooperating). They found she was hard to understand, and therefore, could benefit from speech therapy, but that alone would not qualify her for services. They scored her as a total of 52, and anything greater than 61 is normal for her age.

Physical and occupational therapy evaluated her to see if she has problems. In her motor domain on the Battelle Developmental Inventory, she had a developmental quotient of 87, so was percentile ranked of 19th. This was her highest score. Her Sensory Processing Measure evaluation was done by both me and her preschool teacher. She ranked much better at home than at school. She was typical in social participation, vision, and hearing, had some problems in touch, body awareness, planning and ideas, and definite dysfunction in balance and motion. At school, she had some problems with vision and body awareness, but definite dysfunction in social participation, hearing, touch, balance and motion, and planning and ideas. Her total sensory score was a 76 in the school form (this one had a different rank - 80 was the highest school - the closer you get to 80, the worse off you are - so she is pretty close to have definite problems in this are for school).

They observed her in school, and saw a lot of the concerns that we have been seeing. She had trouble participating in circle time - and had to be reminded many times to participate in the group. She finds comfort with the teachers by wanting to sit in their laps or hold their hands, but has a hard time interacting with her peers. She becomes preoccupied, and has trouble moving on often. She has physical conflicts with her peers when she wants something they have (nothing extreme, but she does not handle these conflicts well).

So now back to the autism rating. They verbalized they can not diagnose autism - that has to be done by a medical professional. But they can do evaluations and see if she has autistic type behaviors. This is the point I cried, because they rank it based on whats called a T-Score. Any score of 59 or less indicates small to average number of concerns. 60-64 indicated slightly elevated concerns in regard to ASD (Autism Spectrum) type behavior. 65-69 are considered elevated range, and anything 70 or above are very elevated, and often strongly associated with a clinical diagnosis of autism spectrum disorder. This is ranked based on an evaluation her dad and I filled out. I was a little shocked to see the results. We have always suspected she might have some autistic type behaviors. But I never thought she would rank high. Her total score was 65 (elevated). This means she has many behavioral characteristics that are similar to behaviors of children diagnosed with ASD. DSM-IV-TR scale was very elevated at 71 - this demonstrates symptoms that are directly related to the diagnostic criteria medically for ASD. She had slightly elevated scores for social/communication and unusual behaviors.

Treatment scales were also ranked. She is elevated in peer socialization, stereotypy (so typical movements/behaviors seen in ASD), and behavioral rigidity (has a tough time changing her routine). She was average in adult socialization, and attention/self-regulation. She was slightly elevated in social/emotional reciprocity, atypical language, and sensory sensitivity. So overall she is consistent with ASD. So now we have more to back us up to get her evaluated from a medical standpoint to see if she needs to have an autistic diagnosis.

So all in all, she qualifies to participate in Early Childhood Center. We will meet February 13th to do her officiall IEP - which is an Individualized Education Plan. We will find out exactly what services she will get. I have a feeling between ranking -2 deviations in 2 things, -1.5 in at least 1 thing, and the autism spectrum rating, we will probably get into the special education programming. There is a possibility we might just do the preschool program, but we know we will at least get some sort of therapy. I am anxious. I am scared. I am saddened that we have heard "Autism" along with my child. But I am glad we will be getting services when she turns 3. I am glad we are validated in our feelings, that there are others who are seeing behaviors that can be concerning. And I am glad that we have found where we need to be. So now on to the next road in this adventure. I am not sure how to feel, but I know she is still the same Brooklynn, no matter what results we heard today. And I love every bit of her.

Sam's Results!

Finally, after 2 months of waiting, we received a phone call with Sam's test results. And they are...drum roll please...NEGATIVE!!!! This is wonderful news! We don't have to worry any more about him getting cancer than any other person out there. WE can rest easy knowing that at least for now, our fears have been laid to rest for him. Next step? I get my labs drawn tomorrow. And the waiting game starts. And I have to say I have some thoughts in my head and some fears (I am sure the same that were going through Sam's head when we tested him). What happens if mine comes back positive? That means i have to have my breasts, uterus, and thyroid checked within the next year or so. My cancer risk is 10-80%. But I am not going to think about that now (or try REALLY hard not to). I will deal with it when the news comes. 8 weeks from now. Argh. But if my test comes back negative - we can talk about having another baby! We will know that there is so much less of a chance that we will be passing something on to our kids. We will know that it is not a 50% chance of passing something on. And we will know that Izzy has no chance of having this PTEN mutation! And my heart will feel so much better. I will still be struggling with the daily worries about Brooklynn, but I can just focus on what we need to on 1 person. It will be wonderful. If I send positive thoughts into the universe, we will get some positive results right? I guess I can think that for the next 8 weeks to help get me through. And for 8 weeks, we have something to celebrate. :)

Year of 2012 in Review

Wow, I just looked back on my blog for this year. I am so grateful I started blogging. I never knew how important it would be for me to keep track of all my thoughts, worries, and the girls' medical history. It reminds me of all we have been through. It reminds me of how strong we have become. If you asked me in the beginning of 2012 what I think this year would be like, I would even have been able to start to explain what we have encountered. We saw 3 new specialists, we went to 7 specialists for Brooklynn alone. We went from exploring what might be going on, to having an answer. Life has thrown us a curve ball, and even through all the terrible things, if nothing else, it definitely brought my family closer together. This year I learned a few things... 1. Resilience, patience, and taking it "one day at a time" - these are all concepts that I have learned. I am not good at this by any means, but I am getting better. I have learned that not everything is instanteous. That there are things that are completely out of my control, and I just have to sit back and let the world guide me as it needs to. But I learned that I would do anything for my kids. 2. Being deligent and hard headed when it matters. I knew there was more we needed to do. I knew that I didn't just have to sit back and let my insurance company tell me no we won't cover it. I continued to push ahead and found other options for us. 3. Accepting help - this to me is accepting help from providers. This is me accepting the fact that the girls' dad and I don't have all the answers, and at times we need to go to the professionals (such as Firsteps) to give the girls the things they need to foster and grow. 4. I have learned how completely strong my kids are! They are only 2 and 4 and yet they are stronger than anybody I know. They can roll with the punches, they are always loving, and they are always reminding me that it doesn't matter what life throws at you, but if you have people who love you, you will get through it as best you can. 5. You can do everything right (maybe a few things wrong), but some things no matter how hard you try you can't change. We can't change that we got the diagnosis of PTEN Hamartoma Tumor Syndrome. We can only work with what we have and make this life the best we can. 6. Family truly is the most important thing. I will sacrifice anything for my family. I am the momma bear when it comes to my kids. I will protect them as best I can. And if they do get hurt, or life throws them something terrible, I will be there to pick them up. We will get through whatever it is we need to get through as long as we stick together. So 2012, even though there were times you completely knocked me on my ass, I still am grateful for the wonderful gifts I have been given. I have an amazing family, not only my tiny family of 4, but all those other amazing people I am proud to say I am related to (whether it's by blood or marriage, either way I am lucky). My hopes for 2013? That we all remain healthy. That after 3 months, we have an answer for Sam's test, and either we can get him tested and cleared of all possibilities of cancer, or we can be excited because it's negative. I hope we continue to grow stronger. That we can finally get an answer as to if we will have more kids or not. I am hopeful that all those around me stay happy and healthy. I am hopeful that no matter what, we can continue to grow strong and continue to expand our love. And I am SOO excited to see how the girls' grow and change. To see their personalities develop even more. To see how strong they become, and to see the progress when I look back on my blog and realize just how far we have come.

Update from the last month..

So our household is still adjusting to the news of the PTEN mutation. We are still awaiting Sam's tests results. So we are still in limbo of how to feel completely. We are starting our evaluation for the school district to see if we can get therapies or get admitted into their early childhood preschool. It is very overwhelming. We have to have many evaluations. Yesterday started our evaluations - we had the cognitive, autism therapist, and speech who observed her. The questions they asked were overwhelming. They saw Brooklynn in her full force - they were able to witness her inability to transition, her complete and utter focus on what she wants and inability to move on if she doesn't want to, her repetitive behavior and speech, and her sometimes "aggressive behavior" of hitting and throwing some silent fits. It was hard to see it. It was hard to hear the autism therapist ask if had ever heard the term autism with her (she was researching what her syndrome was - saw autism is 25% occurence, and even stated she saw behaviors that could possibly be concerning). It was disheartening, it was nerve racking. And next week, we go to the speech therapist, occupational therapist, and physical therapist (possibly). I also have to speak with the school psychologist to see about her social/adaptive behaviors. I won't get the official results until January 23rd. I am used to waiting, but I am so tired of waiting! I know that she needs therapies. It is just scary that I might encounter something I don't want to or that i haven't heard before with her. I asked her teacher to fill out a questionaire, and it was eye opening to really see how little she is interacting with her peers. It makes me a nervous wreck. I see her so fun loving and excited and play well with her family. But I know she has problems interacting with those her age. I just hope we can get information that helps us to improve all she needs improved, and foster her development as best we can. I am just struggling with being okay with all this. I am struggling with staying strong. I struggle with not letting it eat away at me day to day. I think time is making things better, but it is always on my mind. I am letting it consume me and I know I should not do that. Maybe after we get all these evaluations out of the way, and we no longer have to wait for things, I will finally be able to move on. But we still have so much up in the air. It sucks. Izzy had a cardiology appointment today since her PCP heard a murmur - she felt it was innocent but wanted to check with everything we have been through. We went and she passed with flying colors - her heart was perfectly normal! So one thing marked off my worry list. We are getting ready fro christmas and very excited. Life is so amazing, even with everything, that I try to take all the positive and concentrate on that. I keep pushing the negative back...but sometimes it just creeps its way to the front. One day it will go away completely...I hope :).