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 :).

Random blogging of Thoughts...

So blog it's me again. I am going to be babbling on...again. Things have been hit or miss lately with my mood. I go from being a-okay with everything, than I get hit with a wave of anxiety/depression/fear. I don't know if this is normal or totally uncalled for. I don't know if I am thinking too much about this (probably...I always do). It would be so much easier if I had people to talk to about this new diagnosis. Nobody knows what this means. Nobody can give me any sort of prediction because the data is ever changing. There are no families I know that have dealt with this diagnosis. The only thing I can do is read, and read, and read some more about different research articles that contradict each other. About different blog sites that freak me out, or offer me solace knowing I am not alone. There is a message board that I can participate in - but they have been down due to Hurricane Sandy. I have been waiting since we got the diagnosis to be able to log in, but I have been awaiting approval. I asked to participate in the Parent to Parent Support program through CMH, but there are no registered parents with this same diagnosis, so they have to do a national search. My pediatrician has never heard of it - and granted she is pretty remarkable and will catch anything I should be concerned about. She told me when I informed her that if we ever need to make any type of referral she will sign it no problem. She knows what FirstSteps has found (her upper torso weakness, her language delays, some social concerns), and she is all for doing what we need to. But I feel like a lot of it is going to be dependant on our eyes and ears, our knowledge, to guide her cares and know when to be concerned. And that is the scariest feeling in the world. What if I miss an article and it shows that there is something that pops up, and I don't catch it? I know she will be looked at by many medical professionals, and I shouldn't be that worried, but I am still fearful. We have all the right programs instituted for her - she has been in the therapies she needs, and we are working on her developmental evaluation referral. We have many specialists already involved from prior to this diagnosis. I am debating trying to get in contact with Cleveland Clinic - I think I will wait and see if Sam get's a positive test result. If he does, we might look into a family trip out that way just so we get all the knowledgeable people giving us as much information as we need. And to top it off, we now have to go to a cardiologist for Izzy - the doctor heard a murmur at her check up. She thinks it is an innocent murmur, but didn't want to miss something due to all the other things going on. So now I have her to worry about. It wouldn't be so bad if I had time to process. But I feel okay about everything when I am with my kids, until I go back to work and am immersed in families who have all these terrible things happening to their children. And I can't help but personalize. I wish I could talk to others and they would understand my fears, anxieties, or thoughts. I wish I could stop feeling like these thoughts are me being crazy. I wish I knew if the worries were warranted, if others with this diagnosis were feeling the same thing. Or is it like most everything else with me - I am over thinking.

Transition Meeting

Today we had a transition meeting from Firststeps to Early Childhood Education Center at the school district. Since Brooklynn turns 3 in March, Firststeps can not provide services after that time. So I met with the school district to learn more about it. Boy, am I overwhelmed! It was very emotion sitting in the meeting, and honestly I was not expecting that at all. The thing that hit me was the terminology "special education". I knew Brooklynn has been needing therapies to improve her speech and her ability to play and transition. I even knew that were some quirky behaviors she has that may or may not mean anything. And than you add those things to her new diagnosis, and my mind and heart just felt so many different things. This meeting was intended to just get information. The speech therapist, the special therapist (aka "behavior/play" therapist), the FirstSteps coordinator, and the Early Childhood Center Coordinator were sitting at this table. We discussed where Brooklynn is now. We discussed her improvements, and things we still are continuing to work on. We discussed her diagnosis, and what it could mean developmentally and intellectually. We discussed how her sessions have been going. And I started processing some things I have not. Such as her hypotonia issues in her upper torso, and how these are truly starting to effect her development. She is having a hard to grasping objects to be able to things with them (such as a fork, spoon, crayon). We are working on her strength, and her ability to interact with others. It was decided I will meet again in the end of November. I will give permission to start the testing process at this time. The testing includes evaluating her eligibility based on her development in physical, cognitive, communication, social/emotional, or adaptive. We will also fill out an Autism Spectrum Disorder questionnaire. I am nervous. I am scared. I am half thinking that all of these will be fine. I am half expecting to get blindsided by something that I was not expecting. She has to prove that she falls 1.5 standard deviations in 2 or more areas of development, or 2 standard deviations below one area of development to be accepted into this program. There are different levels. There is just appointments with therapists (speech, social, etc). This usually is if a kid only needs an hour or up to 3 hours of services if we choose. There is also the preschool program, which is where they can either integrate her therapies into her classroom, or pull her out of the classroom to accomplish her therapies. There is also the special education education, which would be if they needed more than 3 hours of therapy sessions, and are having trouble mainstreaming with the other children. Right now, I don't know which part we will qualify for, if we qualify at all. I don't know what their assessments are going to bring up. I don't know where we will stand and what services will need to be provided. If she gets accepted into the preschool, it is usually 4 half days a week. If she shows that she will regress during the summer months, there is the potential to have summer time sessions as well. I am not sure how to feel. I look at Brooklynn, and she is such a loving and fun little girl. She is super intelligent, and can really do some things I am in awe of. I know that i shouldn't think one way or another. I felt like after the meeting, it seemed that we will probably be accepted for one service or another. I am anxious to get this process started, but I know it really doesn't matter how long this all takes as we won't even start any of this until she turns 3. First steps has been amazing, so I am going to be sad to transition away from them. They have helped Brooklynn in so many ways. They have helped me change as a parent so that I can meet her needs. The Early Childhood Center looks amazing. The services they could provide are astounding. The thought that she would even need these services, a little nerve racking. I never thought I would raise a child who had special needs. There is absolutely nothing wrong with that - I will take that on full force and I am willing to do whatever I need to provide her the services she may need to fully develop and grow into the wonderful amazing person I know she is and will continue to become. I just don't want any of those special needs she might have to define her. I don't want her to ever question where she stands with others. I don't ever want her to feel like she is incapable of doing ANYTHING! I want to foster her and let her know that she can do WHATEVER it is she wants to do. I just need to accept that I might need some more people to help her get there than just her father and I. I am very glad Brooklynn has her older sister. Those two are wonderful together. They love each other completely. They play together so well. They help the other one, they accept the other one no questions asked. Izzy helps her little sister in any way she can. Brooklynn helps her older sister learn the meaning of sharing and patience. It is truly remarkable to see them interact with each other. Izzy is growing into such a wonderful little girl. She is always considerate of others. She wants to include everybody, and her sensitivity is so stellar at such a young age. The girls truly are best friends, and I love every minute that they are together. I can't help but smile and laugh and enjoy life when they are together. Even when they fight, it's because of something silly, and the fight only lasts about 2 seconds. I am so excited to see them continue to grow as sisters, and best friends!

Genetics Appointment

Today we had our appointment with genetics. We talked mostly with the genetics counselor. Let me just say, it was a nice meeting, even if the information we received was a little hard to take in. The genetics counselor validated our feelings. She said it's a diagnosis most people don't understand or know about. It is a long explanation for others to understand. There is an initial reaction to not understand where we are coming from with our fears and thoughts because she is healthy right now. It is not like other diagnosis that others understand. If we had the diagnosis of Down Syndrome, people would know what that means. I cried, she teared up, I stopped crying, I teared up again. You know, normal reaction for me. She really didn't tell us anything different than what we knew from the research. They have seen others with this PTEN gene mutation. They gave us an official diagnosis - PTEN Hamartoma Tumor Syndrome, or we can just say PTEN related disorder. (the second sounds a little less scary). She stated that there is definitely an overlap between BRRS and Cowden Syndrome now, so the symptoms that go with each of these can both be seen with Brooklynn. Cancer is our biggest long term risk. The numbers are always changing, so she stated to not trust the percentages. They can go from 25% to 80% for chance of getting breast cancer depending on the research article. They are still learning about this gene mutation. We have to monitor her thyroid every year. We have our first thyroid ultrasound on Monday. We will have to monitor for GI polyp symptoms. We will have to go yearly to the dermatologist. There are many types of growths, tumors, and malignant cancers that can be seen in this syndrome. Brooklynn could have many symptoms, she could have no symptoms, there is no predicting the severity. There is a clinic in Cleveland that deals with PTEN related disorders. They have a Dr. who goes there that is highly recognized for her work in PTEN related disorders. The genetics counselor will contact that clinic and see if it will benefit us to get in touch with them. She stated she would put us in touch with other families that are dealing with the same thing. There is also a doctor at KU who does a lot of research for adults with PTEN and cancer. We might be able to speak with her at some point. Sam had his labs drawn today - it may take any where from 2 weeks to 6 weeks. Those results will reflect the next step. If it is positive, he will have to have his thyroid checked. At 35 he will have to start some other screenings. If his is negative, I will have to have my labs drawn. If mine is positive, I will have to do thyroid, breast, and endometrial cancer screenings by the time I am 30. If either of us is positive, we have to decide if we want to test Izzy (she has no symptoms at this point, so we feel that right now our decision is no - but if she develops any symptoms we would test her - we feel like she should be able to chose for herself if she wants to know as she gets older since she has no symptoms of anything being wrong). Brooklynn will have to be told at some point in her life about this. The counselor talked about how some people deal with this. She said some people tell them little by little, some tell them all at once. Some kids want to speak with a medical professional, some just want to talk to their parents. We need to tell her prior to her being child bearing age. She has a 50% chance her kids will get the mutation. They could either have mild symptoms, or much more severe. She will have to talk to her significant other that she is at increased risk for cancer. That she might have to have her breasts removed at a young age. She might get breast, skin, endometrial, brain, renal, or GI cancer. And at any age it can show up. This will possibly hinder her ability to get life insurance at a decent premium. This diagnosis will effect her whole life, and even before she knows it. Right now, our biggest concerns to pay attention to are her development. Foster her learning and development as much as possible. The positive is now we should get services we need easier. We will be vigilant about screenings. She will possibly get a developmental screen done to see if there are concerns. This goes along with learning disabilities and developmental delays. Sam was my rock. He was so strong through all this. He took it wonderfully. He supported me in all my million questions. He pretty much summed it up "We can't change this. It is what it is." I still feel like I am in a fog. I don't know necessarily how to handle this. I don't know how to process this, but I am working on that.

Searching and hoping...Or searching for hope...

So it has been over a week since we got that phone call that changed our outlook on life. And I have had time almost every day to do a little bit of research. I have tried really hard to not google this...but it is very hard to not google PTEN to discover what others are feeling and going through, and what the most recent research is out there. I feel like I am going through the stages of grief. That probably sounds ridiculously stupid to those out there who have never received any type of diagnosis for you or your child. Or you might even find it stupid if you have received a diagnosis. Don't get me wrong, I am SOO happy that right now, both my children are healthy, and that my husband is healthy. But I have so many fears going through my head, and I am trying to keep them completely hidden. This blog is going to be a reflection for me - a way to get thoughts off my mind. Don't feel like you have to read. Don't judge me by anything you may read. If it offends you or upsets you, stop reading. If you don't know how to handle what I am saying, sorry. But I need this blog to reflect and sort through things. That is how I am going to overcome. That is how we, as a family, are going to grow stronger. I need to be strong through this. Stages of Grief: 1. Shock and Disbelief - I guess I was only in this for a short time frame, like probably 5 minutes. It is so disheartening, though, to know that I have not been in this stage. I can't really say I was ever shocked - I always knew there was something going on. And specialist after specialist couldn't figure out what. And finally, one doctor realized to draw a lab that changed our lives. 2. Pain and Guilt - The pain is there. The pain has been there from the time she has been born. The guilt I have felt thinking that there was something not right. The guilt that I felt when I had relief that we finally had answers. The Pain I feel every day knowing that any day our lives could completely change. That any lump, sickness, or abnormal lab could lead us in a whirlwind because that would mean this new diagnosis has reared its ugly head. And not only for Brooklynn, but also that there is a possibility that Sam or I could be carrying this, and that there might even be the potential that Izzy could have this. 3. Anger and bargainining - I have experienced anger. We don't understand how such a beautiful little girl could have to go through this. Granted, she might not end up getting anything. But I am angry that she has to go through tests her whole entire life. I am angry that I couldn't protect her. I am angry because our lives have changed. I haven't been in the bargaining part of this though - there is no point. You can't bargain your way out of this. 4. Depression, reflection, loneliness - depression yes. reflection, way too much. loneliness, sometimes. I have so many people who have supported us through this. But I feel lonely in my thoughts. I feel lonely because I don't know how much to talk about or to worry about this. I feel lonely because everybody tells me at least we know and can start screening, but I have such an overwhelming sense of fear that I can't away from that easily. I feel depressed because I am allowing myself to get depressed. 5. The upward turn - don't know if I have hit this yet. I get it, and than I go downhill with a day at work. With tears that another mother cries. With another coworker who has found out they have cancer, or tumor, or illness they can't get away from. I am grateful for every day we have that we don't have any diagnosis of "cancer". 6. Reconstruction and working through - this is a day to battle. This is an article by article battle. This is going to be a completely new way of looking at life. Preventative living is what we have to do now. We have to reconstruct the way we live to try to prevent the possibility of the tumors of growing. We have to live healthy. We have to live strong. 7. Acceptance and Hope - I am hopeful. Don't get me wrong. I am hopeful that we never have any terrible diagnosis. I am hopeful that Brooklynn continues to grow and develop. I am hopeful that Sam does not get the positive test result. I am hopeful that I don't get the positive test result. I am hopeful that if either of us do, that we don't have any signs of cancer. I am hopeful if we do, that Izzy doesn't have this. I am hopeful that if we don't, we can figure out if another baby is in our future. I am hopeful that if we do, we are accepting of the fact that the 2 girls are going to continue to be our only world. This might seem silly to some that I am thinking about other children at a time like this, but we always imagined a large family, and that dream in itself is no longer possible (at least right now). Go back to stage 1, 2, 3, and 4 for this realization. I am accepting that we have this answer, so now we have to figure out what this means. But than I go right back to the other stages. Seems silly to be in the stages of grief when my 2 beautiful girls are running around being crazy and laughing and enjoying life. I am really trying to enjoy every minute that we are all healthy. I feel crazy some days. I feel like my thoughts are all over the place. I never feel 100% in the moment. I hope tomorrow when we go to genetics we have some more answers, or at least better answers. I hope every day I get a little closer to being in stage 7, fully and completely. I don't know if that will ever happen, but I am hopeful.

Article

So when you research anything on google, there is a wide range of what you might find. So as I have been doing research, I am finding so many articles that are very informative. But I wanted to know from genetics clinic standpoint what is a good article/website that is consistent with her gene mutation. Here is a link to what I was provided. It gives good tables, percentage risks, and just a general overview. Just thought I would post for those who would be interested r.

Genetics Phone Call

We received a phone call from the genetics counselor. One of Brooklynn's labs finally came back. We were excited because her microarray (the test that looks at the pieces of her DNA) were normal. However, it did come back with an incidental finding. We found out she is a carrier for something called Alpha 5 reductase deficiency. So what does this mean? It means that if she marries someone that is also a carrier, they have a 1 in 4 chance of having a baby who has this disorder. This disorder can cause problems if it's a boy that is born, and they will be born without testosterone. This also means that more than likely, at least one of us is a carrier. There is a small possibility that both of us are a carrier, and we just haven't seen it because we have 2 girls. So now we have to decide if we are going to be tested. We have decided that there is a possibility that we will want to have more kids - but if we find out we are both carriers, there is no way we are going to risk this by having another child. We are supposed to meet with the genetics counselor once that PTEN gene is back. We will find out more information at this time. While I am glad that her microarray came back normal, it stinks that we found out this "incidental" finding and knowing what to do with that information. It is still doesn't explain her other symptoms and things, so the PTEN test results might still show something, which stinks. Guess we will have to wait until October when those results come back.

Our life Is Different Now...

So I know people are wondering about my post today on Facebook. Well, the biggest reason for that post was we got a phone call on Monday. Brooklynn's labs came back. It was positive for the PTEN Gene Mutation. What does this mean? It could possibly mean a lot. One thing it means is that we finally have an answer to some of her medical problems. After 2 1/2 years of 8 specialty visits, and 3 1/2 months of waiting test results, we have an answer. I was just hoping it was negative. When they told us they were going to test her for this mutation, I of course got online and researched it. And I got on a blog called PTENlife.com. And as I read, my heart dropped a little with each kid. They had such similar stories to us. Their children were born large for their gestational age (Brooklynn weighed in at 8lbs, 6 ounces 4 weeks early). Their children's heads grew quickly, and went through a large range of tests, including CT scans, neurosurgery consults, genetics consults, mucopolysaccharidosis screening, and all came back negative. Their children have speech/developmental delays. Their children have large tonsils, asthma, and the same facial features (depressed nasal bridge, down slanted eyes), low muscle tone (Brooklynn has a weak upper torso). I kept saying that I was reading too much into the blog. You can find similarities any where if you look hard enough. But when I saw the boy on the front of the website, I just knew in the bottom of my heart that this was going to come back positive. And it did. Unfortunately, that voice in the back of my head that was telling me that there was something there, and to not stop looking until we have an answer - well that bitch was right (sorry for the cursing - but I so wanted that bitch to be wrong). Taken from the blog itself, here are some of the things that this gene mutation can cause..."A PTEN gene mutation causes tumors and growths in the body (particluarly in the thyroid and GI tract) since it is the tumor suppressor gene. According to published medical literature, other characteristics of the syndrome include macrocephaly (large head), low muscle tone, excessive drooling, vascular malformations [blood vessel abnormalities], lipomatosis [abnormal localized or tumorlike accumulations of fat in the tissues], hemangiomas [benign, and usually a self-involuting tumor, (swelling or growth) of the endothelial cells that line blood vessels], intestinal polyposis, high birth weight, proximal muscle myopathy, joint hyperextensibility, pectus excavatum, scoliosis , certain eye abnormalities, and in some cases developmental issues (which may meet the criteria for Autism) and mental retardation. Brown spots in the genital area are also characteristic. Certain benign skin lesions on the face, mouth, hands and feet are also characteristic (oral lesions, facial papules, and acral and palmoplantar keratoses). A person with a PTEN mutation may have some, all or none of these issues, and in varying degrees of severity." From another website, I found some statistics: - Abnormalities of the thyroid are present in about 60% of patients. These are usually harmless growths but occasionally may be cancerous. - Breast tumours: These are the most important non-cutaneous association. Fibrocystic disease resulting in benign lumps in the breasts is present in about 75% of women. Breast cancer occurs in 20-36% of patients. - Gastrointestinal polyps and other abnormalities are present in about 72% of patients. - Genitourinary tract involvement may include ovarian cysts and cancers. - Central nervous system – development of Lhermitte-Duclos disease caused by hamartomatous growths of the cerebellum (rare). - Skeletal abnormalities such as bone cysts. At least 40% of patients with Cowden disease have at least one cancer. There are varying degrees of the gene mutation, and we haven't met with the genetics counselor to find out exactly what part she has. But she said it is most consistent with the Cowden disease - which is the highest risk of getting cancer sometime in her life. She will have to have yearly thyroid ultrasounds from here on out. She will have to have yearly dermatology exams for the rest of her life. When she gets older, she will have to have earlier screenings for breast cancer. The risk for colorectal cancer is increased. The risk for intestinal polyps is high - so if she has abnormal stools we will have to start doing screening for those. She is at higher risk for having behavioral, social, or developmental problems. They see this a lot in autistic kids. When it comes time for her to think about having children, she has a 50% chance she will pass this gene on to her own kids. One of us might also have this mutation, so Sam will be tested first, and if his comes back negative, than I have to be tested. If either of us have a positive test, other family members might need to be tested. And we have a 50% chance of passing it on if we have any more kids (which we won't if this is found in either of us). This is life changing. This is stressful. This is crappy. This ultimately sucks! It could mean that nothing happens to her. But this could mean that something does. And to a mom, that statistic does not feel good. It hurts my heart. It wrecks me. It makes me cry every other hour. It makes me hate the world, and makes me angry. It makes me sad. I hate my insurance company - they denied to pay for this. This makes me grateful to the genetics at CMH, they knew a place to send the gene that would not break our pocket book. If it wasn't for their perseverence, we might not have had this test. And we might have caught something too late. If nothing else, I am grateful we know this is what she has, and we can make sure we screen her and watch her close, so if she did develop cancer, we would hopefully catch it early. I am a mother who is at a loss for words, but than has too many she wants to speak. I am a mom who wants to hug her children that much tighter, and keep my family close forever. I am done blogging now - I want to go be with my children and love on them and play with them, and let Brooklynn be a little girl, for as long as she possibly can be little.

My Patience Is Thin...And FirstSteps Update!

So we have been waiting...and waiting...and waiting to find out results from Genetics Labs. We had to wait on insurance to approve (or not) for 3 weeks before we got the denial. Than we decided to go ahead and send the labs and pay out of pocket. Well, just found out that the order never got placed for them to send out the labs, so we have been waiting 3 more weeks to find out that the timeline is getting started AGAIN! So they just FINALLY sent out the labs to GeneDx lab in California last week. Which means we still have 4-8 weeks to find out the results. I find myself to be somewhat of a patient person (mostly). But my patience is running thin. I don't know if I can handle any more hurdles to getting these results. I know the results don't really change anything, except maybe an understanding of what is going on - or another test that proves everything is just fine. FirstSteps has been coming to our house for about a month now. And I feel like it is one of the best things we have done for Brooklynn. Her vocabulary is starting to take off. She is attempting to use more words than ever before. They might not be 100% clear, but she is attempting to talk a lot more which is encouraging. We are working on some of the behaviors she has - such as being able to sit and concentrate on things that she might not want to do. Firststeps is giving us things that we can work on at home, which makes it nice to know that we can continue to foster her development. I am excited to see how much more improvements she can make. The girls start school in a couple of weeks. Izzy is so excited to be a big girl and go to Pre-K. Mommy's not so sure she is ready for this big step yet! And Brooklynn has no idea she is starting school, and mommy is really nervous for this big milestone as well. School will really help us, though, in determining if her behavior things are really something to worry about, or if she will adjust to a schedule and expectations that school presents her. We get to meet their teachers next week which I am very excited for! Life has been full of exciting and fun things this summer. The girls are growing every day, and discovering more and growing so much! I am loving every minute of this parenthood thing - even the difficult, trying times.

Waiting game extended...

Well, insurance company - you are not my favorite people in the world right now. So you decide to deny all the genetics testing, that's fine I guess I have to deal with it. But you wait until the final day (a full 30 days) to tell us you deny it? What frustrates me the most about this (besides the obvious that now insurance won't cover it, and now we have to pay out of pocket for a test that a DOCTOR recommends)is that now we are in the same situation we would have been in 15-30 days ago if you had denied then, but a month later in getting results. Now don't get me wrong - one month isn't that big of a deal in the grand scheme of things. We have been waiting almost 2 1/2 years. But we could have had results of one of the tests by now...or close to it. Now we are going to have to wait another 4 weeks for one test (microarray) and 6-8 weeks for another test (gene testing). They have to send out to a different laboratory, that offers genetic testing at a significant cheaper price ($100 per test, one of the tests costs $4000 if they didn't provide this financial assistance). Still a LOT more than we were hoping to pay. But the genetic doctors very strongly that we should send this lab. Than we might have some answers, and be able to provide Brooklynn with the appropriate services. So we will be sending them out tomorrow. And than we will wait some more. Brooklynn had her first 1st steps therapy session yesterday and I would classify it has not TOO successful. She was in full force stubborn mode! She didn't want to do anything, she didn't want to copy, and she just wanted to grab for everything she wasn't supposed to. We do have some tasks to work on now, which feels good. We need to try to get her to use the sign or say "More" when she wants stuff, instead of just getting it for her. This will help with both her speach, and also her ability to relax and wait for something which should hopefully help her attention span. This might be hard - as we give in to her pretty often. Who wouldn't, she is just so darn cute!! Isabella was super excited about the therapy session, because now she can be a "teacher" and help her sister with words. This ought to be great fun. Isabella has started getting an "allowance" which is kind of fun now too. She has a chore chart, which she has to do 6 chores throughout the week (this is simple stuff such as put her dirty dishes in the sink, put her clothes in the laundry basket, eat all her dinner, brush her teeth, pick up her toys when she is done, and keep her room picked up). She is SOOO excited about this. The amount of stars she gets determine the amount of money she gets for her allowance at the end of the week. Right now, we are going to go broke as she is SOO excited to do her chores (last week I owed her $5). I think this will go away as the weeks go on. But she will have a save bank and a spend bank. She got to put that money in her spend bank, and next week she has to put it in her save bank. She already knows she wants to buy legos with her money - she has a ways to go. But I think I am as excited for this as she is! I can't wait until Brooklynn can join in. The toys are getting picked up a lot easier than they used to :).

Brooklynn's ENT Appointment

I forgot to post about Brooklynn's ENT appointment yesterday. I like to write this stuff down, mostly for myself, as I usually forget what was mentioned, so this is more for me to remember :). She still has her left tube in, and her right ear still looks great (this tube had been removed as it was falling out). She will keep it until it either falls out or April of 2013. If it is not out, we will either remove it in the office, or have to take her back to surgery to have it taken out and the hole sewn up. Her tonsils are still enlarged (they always have been). On a scale of 0-4, she is a 3. He said 4 is touching, and three is where you can see the uvula and there is a little space. She has not been snoring, and has not had any cases of strep, so he doesn't feel like we need to take them out yet. He said if she starts snoring, having trouble with sleeping, and we notice a behavior change than he will take it out (I guess they only remove about 60%? of the tonsil or something). If she has 5 strep throat cases in 1 year or 8 in 2 years they will remove 40%(?) of the tonsil. Other than that he said things look good. I am SOO happy we made the decision to have her tubes placed because ever since she had them, she has not had hardly any ear infections (in the first 11 months of her life she had 8 infections, and after her tubes were placed on February of last year, she has only had 2). Such a good feeling to know we made the right decision.

First Steps Referral

We have all the assessments and things needed for our First Steps program. We qualified to receive weekly therapy sessions in our home for Brooklynn. So we will have a speech therapist come to our house (or my mom's house depending on my schedule) and work with her to help improve her speech. She is definitely getting better every day, but she is still having some troubles with communicating. My biggest concern is her ability to communicate, and when she can't she gets frustrated and sometimes resorts to hittiing or biting. I would love to stop this from happening, so feel like therapy would be a great step. She is starting to say A LOT more words (50+), using 2 word sentences, and having "conversations", but it still hard to understand what she is saying some times, and people who don't know her have a hard time understanding what she says. She is communicating pretty well with actions. They feel like they would be able to provide her with great services to improve her speech, and also help us with her behavioral things (she has a really short attention span a lot of the time.) I am really excited that we will have these services, and hope that we won't need them very long at all. I hope by the time she is 3 we won't even need to go to the school district because she will be caught up. She really is not that far behind in anything, but I want to give her as many tools as she can have to make sure she is able to stay up there with everybody her age. I am excited to see the improvements every week. She really likes the therapist and interacts really well with her. The therapist said she is excited to work with her as she thinks she will be fun (I am sure she says this to everyone but still feels good to hear it). We are still waiting to find out if insurance improves her genetics labs. I really want those to be started so that we can get an answer soon. If it shows something that I want to make sure we have her in the right programs, and if it doesn't show anything than be able to move on. Izzy and Brooklynn are both in Vacation Bible school. Izzy is LOVING it as she gets to see some of her friends from school. She has been so excited that she will be starting Pre-K this year. Brooklynn did well for her first day, so I am hoping this is a good sign for her starting school this year.

Just wait....

Yesterday Brooklynn had her genetics labs drawn. Now it's just a waiting game. Wait first to see if insurance will cover it. Then if they do, wait and see what the results say. Some of the testing takes 4-6 weeks, some of it takes 8 weeks. So now I get a little taste of how the parents where I work feel waiting to get test results back. I am not going to stress about it...too much. Just have to try to relax and allow myself to have at least 1-2 more months where we can be oblivious to anything that might be wrong. If you know me very well, you know I am not very patient and I am a worry wart, so we will see how these next few months go with that concept!

Brooklynn's First Steps and Genetics Appointments

So as some are aware, speech therapy through my insurance is not covered, so in order to make sure that Brooklynn gets the services she needs, so that she continues to improve on her language development, we have been referred on to First Steps. We had our first session with filling out paperwork, and not 100% she will get approved to have these services in the home, but we will be doing an assessment in a few weeks to see where she is at. They feel like due to her diagnosis of macrocephaly alone we could probably get something, it's just a matter of how much and what type of services. We really don't feel like she would need much (we being her dad and I) but just a couple of times a month having someone come and look at her and help us figure out ways to foster her language development. She is starting to expand her vocabulary over this last month (I bet she says 50 words or so), but she still doesn't say many words very clearly (she is making great improvements every day though). We ended up getting a phone call Wednesday, saying that Genetics had an available appointment for Thursday morning, either that or we wait until September. I jumped on yesterdays appointment, so we were able to meet with Dr. A. It was a very insightful appointment, not quite sure how to take it right now. She took a look at Brooklynn, examined her spots. She felt that Brooklynn's spots were so faint, and were all irregular borders, and she says with Neurofibromatosis (the disease dermatology and ophthalmology were looking for), the spots are usually darker and have defined borders. They took more of a family history (including cancers, thyroid issues, polyp history). They also measured her again. Her head has stayed consistent for us, but continues to grow from last years' appointment - she is 22.5 cm, her weight is 36 lbs, 6 oz, and her height is 31 inches. Her head continues to shoot off the charts. Her weight and height is above the 95%. She explained there are different degrees of macrocephaly (or large head). There is relative, and than there is severe. She feels like Brooklynn's fits more in the severe category (she said to not get freaked out about the term - it just means she is definitely larger than the norm). She says she looks pretty proportional though due to her height and weight. The Counselor kept commenting she keeps thinking Brooklynn needs to be older (she thought she looked more like a 3 year old than a 2 year old). So while she doesn't think we need to really be worried about neurofibromatosis, she says due to the history of cancer in the family, and her head size, the spots on her skin, and her mild speech delay, she wants us to get her chromosomes drawn. Chromosomes are the genes that make us who we are to all the non medical people. There are 3 different testing they can do on our chromosomes. Dr. A explained it as a cook book. The cook book itself is the chromosome test - this examines the "chapters" of our genes. The Microarray is like the individual recipes - it takes a closer look at all the pieces of our genes to see if there are any bits missing or added on that aren't normally there. There is also a particular gene test she wants to do which is called PTEN. She says that this gene is consistent with some of her symptoms, and doesn't necessarily show too many signs right now, but it has been found to be linked with certain types of cancer (brain, skin, breast - all which are in our family history). She was not 100% that this will come back showing anything, but feels like it is worth a look. So again, it's a matter of what insurance will cover. Due to it being insurance through my work, it might be hard to get these tests approved since she is not showing any signs of medical needs right now. It would help us in the future, though, to know if there are any things we need to watch out for, so that either if she does have the gene that is consistent with cancers we know what to watch for and can catch it early, or if it is linked with developmental/speech delays we can make sure we provide her with the proper services to help foster her growth to the best of her ability. This is a hard one for me. While I think knowledge is power, and it's nice to know what to watch for to be able to help in the long run, I don't know if I want to know. What if by doing this we find out some random chromosomal thing that may or may not mean anything? But than, what if we find out that her chromosomes are perfectly normal, can we stop all this searching and referrals and testing that everybody wants us to do and just say that my daughter is perfectly fine - just a little different and special in her very amazing way? Than I extend the thought out - what if we do find something in her chromosomes? Than do Sam and I have something in our genes that we passed on? Does this mean that we are DEFINITELY done have kids? We both agreed if we ever find out it's anything that we passed on, we are done having kids. We feel bad enough making Brooklynn go through all this stuff not knowing she would, but we couldn't handle making another kid go through all this stuff knowing that it's a possibility. So many thoughts running through my head right now. And I know I should concentrate on the good things and I really do - it probably doesn't seem like I do and all I do is look at the negative and see all the things wrong. But she is the most loving, exciting, dare devil, funny girl. She is constantly trying to make us laugh, and loves her sister, and loves her cousins. She is full of life and excitement, and on the most part she has been pretty healthy (besides all the little tiny things we have found that really do not have much medical significance in terms of her health). I am just ready for this road to be over. Either let's find out something and know what we are dealing with, or lets move and be able to finally treat her like every other kid who DOESN'T have 10 specialists following her!

Brooklynn's Ophthalmology Exam

Today we had Brooklynn's Ophthalmology Appointment. I have to say she did so much better than I thought she would. I thought it would be a disaster and they would be able to look at her eyes, but she let them thanks to some very nice nurses who helped distract her with toys. They first looked at her irises - this is where they would see bumps and change in pigments of her eyes if she had them. THey looked and said while she has a lot of pigment, she doesn't have any bumps, so this was good. They dilated her eyes, and we waited around for 25 minutes in the waiting room. They took us back and the doctor again looked at her eyes, this time at the nerve in the back of her eye with a special tool. Here, they were looking for what's called gliomas, or growths in her nerve. They did not find any of these either. She said sometimes they are so far back that you can't see them, but she didn't think there was anything there. She also said her vision was good. So while I was really relieved that there was nothing wrong, she than proceeds to tell me they can't rule out neurofibromotosis because sometimes these don't show up until a person is older - and commonly they start around age 6. So we will have to come back every year to see if there are any changes. So yet another follow up every year we have to go. Don't get me wrong. I am SOOO grateful that my child is healthy right now. That there is nothing going on with her that would warrant someone to be concerned or to diagnose her with anything. But some days, it feels like I have a ticking time bomb on my hand. That one day, I am going to finally get this worry that is going on in the back of my head to go away, and than something is going to explode in my face. I wonder - are there any other people out there who have to follow with so many specialists and their child ends up being perfectly healthy? Or should I question that we have seen 8 specialists, most of them who are wanting to follow us and won't release us out of there service, that there is just something we have not caught yet? I know I shouldn't think that way. But I am having a really hard time getting that out of my head. I should concentrate on the fact that I have the most loving, fun, exciting 2 year old. She is full of energy and good spirits and wonderful enthusiasm. She makes me smile a hundred times a day. I should be grateful that everything, even if there is slightly something a little off, has been mostly normal. I am, but some days I just need to break down and cry and be angry that my child has to go through all this without any real answers. That's the end of my soap box. I love my family and wouldn't trade my life for anything. Just wish things could be a little easier for Brooklynn, and hope that when she is old enough to truly wonder what is going on, we are no longer being followed by specialists.

Playing at the doctors

Brooklynn's Dermatology Appointment

Check off another specialist on the list of follow up doctors for Brooklynn. Today we went to go visit a dermatologist due to her cafe au lait spots. She weighed in at 34 pounds, and is 37 inches tall. Her blood pressure was 88/54, so where it should be.We go in and Brooklynn put a gown on. They took her medical history. They looked at her skin. Dr. Newell took a Hood Lamp (I think that's the name of it) and took a look at her skin - it's a purple light that helps these cafe au lait spots pop out. They found 7 spots, all measuring >5mm. He said they were very light and not very noticeable. However, they did find 7, and anything greater than 6 is a cause for further investigation. He is going to present her at a radiology conference so they can take a look at her head scans - I guess sometimes there are certain bones in the face that are characteristic of what Brooklynn MAY have.What they are looking for is a thing called neurofibromatosis type 1. It's a genetic (I think) syndrome that can just pop up out of nowhere, or it can be something passed on. In order to get that diagnosis, you have to have 2 characteristics. Right now she only has one which is the 6 or more cafe au lait spots measuring >5mm. There are a few other criteria which can't be ruled out quite yet. Some other criteria is freckles in the underarms and groin, which can develop later in life. Also, neurofibromas which are tumors that are located on or just under the skin mostly in nerves, which also can develop later in life. If there is a family member who has it that would also be a criteria. There are also things that can develop on the eyes called Lisch nodules and tumors that can grow on the optic nerve.She doesn't have any of the symptoms listed above as of yet. I guess there are times when older people don't even know they have this until they have a family member who is diagnosed, and therefore that can't be 100% ruled out, but luckily we don't have any of this in our family that we know about. So now we have a referral to opthalmology where they will take a look at her eyes. This will be a big appointment - if they don't find anything than there is only a low risk that she has this disease. If they do find something, however, it is a good likelihood she has this disease, because than she would have met 2 of the criteria. Some other characteristics of this is scoliosis, macrocephaly or large head (as we all know she has this), high blood pressure, and short stature. Next week, we have the ophthalomology exam. So here's hoping they find absolutely nothing in her eyes.

Brooklynn's Hearing and Speech Appointment

Today I took Brooklynn to her hearing and speech appointment. We were referred due to her decreased words that she says (she says about 30 words, and should say 50-60 at this age). First we went in to have her hearing checked. They can only check for hearing with the good ear, since she won't wear head phones. So what that means is we sat in a room and the lady spoke through speakers on each side of her head and if Brooklynn turned to the speaker, than she passed. She did well with the speakers. THey can only check this way because she won't keep headphones on. There could still be some mild loss in one ear or the other, but we wouldn't know that until later. She passed the screens they could do at this age, which means she can at least hear. The second stage was the speech evaluation. Since she is 2, most of the evaluation was questions that they asked me as her parent. I had to either tell them all the time, sometimes, or never. Let me tell you this was really hard. We evaluated her receptive and her verbal language. Some of the questions included if you put out 5 objects, would she be able to pick out one object if you asked her - (yes if they were all objects she knew)? Can she follow 3 step commands - (sometimes)? Can she look at a book and pick out a picture if you asked her - (a few pictures)? The verbal one was a little tougher. They asked if she knew the difference between "her", him", etc (no); does she use inflection (yes); can she say her name (sometimes); can she name small body parts (not really). Well all in all, what we found out is that she as some mild receptive and expressive language disorder. She was on point with a 19 month old with her receptive and on point with a 20 month old with her expressive language development. They recommended we enroll her in therapy. There is a wait list I guess for 4 months to even get into the program. And than after she gets enrolled, they will only be able to do therapy for 6 months. She stated that most kids will need therapy for at least 12 months, but after she turns 3 than hopefully we can enroll her in a school therapy program. The therapy sessions will be once a week, 45 minute sessions. I have to find out if this is even covered by insurance - since it's due to delay and not other medical reason, they might not cover it. At that point we would have to evaluate other options. The speech pathologist also stated some of her concerns were that she sometimes says words great (like baby) and than sometimes cuts out constanants (such as making baby to bay, or not saying the first or last letter in her words). Also, she sticks her tongue out a lot, and breaths a lot through her mouth, which could indicate some low oral tone, which could produce speech problems later on, so we would work on that in the sessions I guess. I told her she will probably need her tonsils removed at some point because they are always swollen, and that's a lot to do with her mouth breathing. So all in all, not terrible, but again stuff we will need to work on when it comes to making sure Brooklynn hits her developmental milestones. I am glad we will be getting her into therapy sooner rather than later if she is going to be having problem with speech, I would rather catch it before she gets too far behind. We have a long way to go to hit 300 words by 2 1/2....

Cardiology Appointment

I just realized I never posted about Brooklynn's Cardiology appointment. First, before I start that, all their labs came back completely normal from their yearly checkup. No joke - completely normal! Even the allergy test that we were waiting on for Brooklynn. For the first time in a long time, we got a "completely normal" with something that relates to Brooke's medical needs. I was so happy. We went to her cardiology appointment middle of this month. We had another echo, which showed that either she has the PFO that is about the same size as last time (it measured anywhere from 2-5 cm depending on what view), but there were also a few views that showed that it might just be 3 tiny holes instead of one bigger hole. Dr. Bingler felt it wasn't anything to be concerned about, and we would just come back in 2 years or so. We will than evaluate at that time if it has closed, or if we will need to discuss something else. Hopefully it closes. She has a dermatology and hearing and speech appointment for the month of April. After that, hopefully things will slow down in the doctor's world.

The girls' Yearly Checkup

Today we had the girls' check up - Izzy's 4 year and Brooklynn's 2 year. It went really well. We met with a different doctor in the office, and I really really like her. She was very thorough. We were the first appointment in the morning, which I think helped. She spent an hour with us, and I never felt rushed which was wonderful. If you know anything about me, or us, I have been very nitpicky with the doctors, especially after everything Brooke has been through. I have a feeling this one will stick. Starting with Izzy. She looks wonderful. She is growing amazingly. She is now 42.5 inches tall (97th percentile), 37 pounds (50th percentile), her body mass index is a little under 50% which is great. Her blood pressure was wonderful 77/56. The doctor talked to her about safety things, and i was very happy that Izzy has been listening to us and could answer a lot of her questions. It is strange to have the doctor speaking directly to her and getting the answers...this is going to be a change for me :). She talked about stranger danger, riding a bike with a helmet, always being in a carseat, etc. She said she had no concerns for Izzy. She was hitting all her milestones, and looked healthy. She stated her tiredness and "my knees hurt" are probably just growing pains since she is so tall and lean. Her hemoglobin is 14.1, so that was normal. She needs her vision checked before kindergarten, and didn't need any immunizations (YAY). I still can't believe next time we will see her for a checkup, we will be preparing for kindergarten (YIKES) She spent a lot of time with us on Brooklynn, due to her complex history. I was very impressed, however because she knew a majority of the basics before she even stepped in the door. She asked about her hospitalizations, she knew she was being treated for asthma, and that we have had multiple checkups with different specialists. I was very happy because a lot of the questions I asked she answered without any prompting. Brooklynn is growing well too. She is 32.2 pounds (75%), is 35 inches (95%), and her head is 22.5 inches (unchartable). She asked how things were going with her head and her development. She was happy to see her head growth has slowed down, and that developmentally she has hit a lot of her milestones. There are some that she expressed a little concern for, but not a lot. She doesn't know at least 6 body parts (I told her it is hit or miss on the eyes, nose and mouth). She also was a little concerned about her speech. I told her she probably says 30-40 words, and says a few 2 word sentences, but I don't know if others would really be able to understand her. She wants to make a referral to hearing and speech, just to make sure her hearing is in fact good, and also to get her enrolled in speech therapy if we decide she needs it at an early age to ward off any troubles in the future. We are going to test her blood for different allergies, in hopes to find out what she is allergic to, and treating before she has any asthma attacks. She is hoping by treating the allergies, we can cut back or eliminate her need for asthma medicine. We can also be aware of what she is allergic to and be able to treat based on seasons. I showed her Brooklynn's cafe au lait spots (she has six of them). They are small in size except one, which is about an inch long, but because there were 6 she wants us to see dermatology. She says occassionally those spots can be linked with neurological problems, and so she just wants to make sure. She says since they are small she is not too worried at this time. So we will see yet another specialist at CMH...I should be very familiar with a majority of the clinics. Just a few minor other things, such as her tonsils were pretty swollen, with some drainage going on, so if we have to have tubes put back in her ears we than we should push to have those removed too. No ear infections though which is wonderful since one of her tubes have fallen out. Other than that she checked out. Now we have our cardiology appointment scheduled for tomorrow. Than we are waiting on the results from Izzy's urine screen, Brooklynn's lead, CBC, clotting workup, and allergy testing, and for the referrals to come through. I was so happy that the doctor was so thorough, but also very understanding on everything. Izzy was very at ease with her, which was wonderful. She gave some very good pointers on how to help the girls learn different behaviors, but never felt condescending which was wonderful.

Brooklynn's Second Birthday!

Brooklynn, So you turned two today. I can't believe it has been two years - two wonderful years since you were born. You have changed my life in such an amazing way. You have taught me resilience, and patience, and to have faith that all things will be good in the end. There might be lots of things that come into this world that are not ideal, but with love and strength, things will work out. You have been through a lot in these last 2 years, and thankfully all things have turned out just fine. You have always been strong, and may shed tears, but forget about all you have been through within minutes. Your personality is amazing! You have such a sense of humor, and constantly have me laughing. You copy your older sister in a lot of things, but definitely have your own personality, and your own way of figuring things out. You have always been relaxed and easy going. You are starting to show a little bit of a temper, but that is just fine with me. It shows that you are not going to do whatever others want you to do. You have so many facial expressions that nobody can question what mood you are in. Your laugh is contagious, and you are always getting others to laugh with you. Your language is exploding. You have never been much of a talker, but you will definitely let us know when there is something you have to say. You are starting to learn 2 word sentences, and are very quick to say Thank you and love you. You love to talk on the phone and get very excited when you hear someone on the other end talking back. You are a TV kid (yes I am going to admit this) There is nothing better than to watch you see a movie and start imitating, especialy when they are singing or dancing. I always thought your older sister was a princess, but I think you are going to be even more so. You love playing dress up, and you love playing with princess dolls and barbies. In fact, any time you see a princess, you freak out and yell "PRINCESS!!!" It's so adorable. I want you to know how much I love you. I will always love you and you will always be my baby girl. Your personality makes me so happy and you can always get me to smile. You have your daddy wrapped around your finger. I am excited to see what you will grow up to be, and so excited to see you develop even more into your own person. You look up to sister, and yet you are willing to venture out on your own. You are content to do your own thing, yet you love playing with other kids. Thank you for all you have taught me in your short 2 years of life. I am sure there will be much more that I will learn from you in the years to come. I love you forever and always, your mommy.

Izzy Turns 4!

Dear Izzy, Today you turn 4. Boy this age has hit your momma hard. You have grown so fast, and every day you prove to me that you are no longer my baby girl, but are my little kid. The other day, it hit me how big you are getting. I signed you up for pre-K - you are no longer in "daycare" you are in pre-K which means one more year and you will be in Kindergarten - that's like big kid school!! So looking back on this last year, where have you gone? Your vocabulary has become ridiculous - you speak in sentences that are longer than what I speak, and you catch on to concepts so quickly. You hear something once, and you can repeat it back. You are learning how to spell, and are pronouncing words in syllables so you can figure out what letters they are made of. You "read" books and can describe a whole story. You can write your name, and can copy other words, such as Nana, Papa, Brooke, Mama, Dad. You know all your letters by sight, and learning what sound each one makes. You are interested in so many things. You love playing baby dolls, Barbies, dress up. You love anything with music, including singing and dancing. You LOVE dance class. You go every Thursday, and as soon as you are done, you ask when you get to go back. You love school, and enjoy playing with all your school friends. Your best friend is "Lilly B". You are learning your socialization skills. We go to a park, and within 5 minutes you make kids who are complete strangers your friends. If only I could have your forwardness and the ability to walk away with more friends than you walked into a room with. You have many strengths, and a few weaknesses. You still need me to fall asleep at night. I don't know if I will ever be ready for the day you go to bed without needing me there. You are very emotional, which has both its good and bad moments. You throw fits if you don't get your way, and many times I have a vision of what you will be like at 16...boy am I in trouble. But those emotions also are very sweet. You don't like anyone hurting, and you will do whatever you can to make others feels better. If it is a kid who is younger than you, you will make sure they are taken care of and treat them like you were their big sister. You love your little sister. You give her hugs when we pick you up from school. You love when she copies you (I am sure this is something you will come to not like so much...hopefully that is years from now). You love when she does something new, and you get as excited as I do. You pull her around the house, and love to dance and sing with her. You melt my heart every day. I love the hugs and the kisses. I love your laugh, especially when you really find something funny. I could have the worst day, and you will start laughing that way, and it gets me rolling. I love seeing the relationship between you and your daddy. Thank you for changing my life the way you have. I know this next year will bring lots of fun and joyful times. I am sure there will be some hard times, and there might be some times I get mad or upset with you. But know that I will always love you and you can never make me too mad. I am excited to see how much you will continue to grow. I love you and I always will. Love always and forever, Your Mommy

Brooklynn's Neurosurgery Appointment.

I have not blogged in a long time...way too long. So here I am making a promise that I will be better. Especially these next few months because it will be filled with multiple different things, including doctors' appointments, follow ups, tests, and (yikes) the girls' birthday! Today we went to our 1 year follow up for neurosurgery with Brooklynn. I was really excited thinking we would be completely cleared! After all Brooklynn has been doing great developmentally. Sure her head size has grown but I feel like she is growing into it. We went and she weighed 32.7 pounds, stood 2 feet 11 inches tall, and her head size is now 57 centimeters (not 100% what that is in inches off the top of my head). Which means, it continues to grow. It is still on a pretty decent curve for her but it is now officially unplottable on the growth chart. After meeting with Dr H., who I know from work as being pretty conservative - he felt we needed to do another CT scan. He feels like he is not too worried, but he wants to make sure her ventricles aren't increasing any more. He felt that after that scan we could probably follow up in 1 year. So here we go ago - she will be exposed to radiation and possible sedation (a lot less sedation than what would be required for MRI). While I am happy he felt that she was developmentally on target, I was really disappointed that we weren't released from their services. So next week we go in for this scan and see how that goes! I am just ready for everything to be over and done with and for Brooklynn to no longer have to endure any appointments.