I wrote a letter of appreciation to the head of the FirstSteps program. They asked if I could come to present at Jefferson City to the board of directors, but I was not able to, so I wrote a letter for them to read. Here it is just for my own keepsake...
"My name is Beckie and my husband is Sam. We wanted to send out a big thank you to the FirstSteps’ program, as they were very helpful with our youngest daughter Brooklynn. A little background as to how we got involved in FirstSteps. Since our daughter was a couples months of age, we have been followed by many specialists due to a large head size. Nobody could quite figure out what was wrong, but she kept hitting her milestones on the late side of normal. At our 2 year check up, it was found that she was starting to fall behind in her milestones, mostly her speech. Brooklynn was only able to vocalize about 25 words, and most of these were unclear. When we couldn’t understand what she was trying to say, she was starting to become aggressive by biting.
Our pediatrician recommended we get involved in Hearing and Speech at our local children’s hospital. We did an evaluation, and they found that she had some speech delays, but our insurance would not cover therapy, as she had no neurological diagnosis. At this time, we had no explanation as to why she was having delays, and therefore we struggled with getting her services that she needed. I was informed about the amazing program called FirstSteps. My pediatrician made the referral, and within a month, we were scheduled to meet with Toni Harrison, and our evaluation was completed. Due to her large head size and speech delays, we qualified for services. We were approved for 1 hour of speech therapy a week with Tina Kemp. By July, we were getting weekly therapy sessions in our home. Within a month of therapy, it was discovered that my daughter had some other delays and hypotonia issues that very well could have gone unnoticed until she fell further behind. She discovered that Brooklynn had some upper extremity hypotonia, and had trouble holding her own body weight on her arms, had trouble maintaining a sitting position for long periods of time, and had trouble with her fine motor skills. She had some sensory issues, including having difficulty with working with play-doh, struggled with allowing Tina to touch near her mouth, whether it be with a Z-vibe, a chewy tube, or just hands. She also demonstrated rigidity in her play skills. With the request of Tina, we were able to get special instructor Shannon Crim involved as well.
These 2 amazing women helped to make so many changes to our lives. They taught us skills to help our daughter not only with her speech, but with her strength and her ability to branch out her play skills. We were taught to give her choices, how to word our phrases to help her copy our words, invite ourselves into her world slowly during play so she would allow us to change her play pattern. They gave not only us tips, but also her school tips on how to help her with transitions. They even taught her older sister Isabella ways to interact with Brooklynn to help her, which made my oldest feel like she was an active participant. We utilized songs and timers to help her move on from an activity that before would have caused a meltdown.
We were amazed at the progress our daughter made in the short time we were blessed with FirstSteps. By her third birthday, she was using sentences, able to express her needs, her core strength improved, and her ability to do fine motor tasks such as stringing beads and picking up small objects, improved greatly. Her agility improved along with her strength. Before therapy became involved, Brooklynn fell a lot, and she didn’t have the strength to catch herself, so she hit her head many times. Now, with the help of Tina and the strengthening exercises they taught us to utilize at home, she is able to catch herself when she falls, as well as has much better balance and coordination than before. They helped us in making referrals, such as Physical Therapy at our local hospital to get HotDog inserts for her shoes due to my daughter’s hypotonia in her lower extremities. They helped us in the process of getting the referral to the Early Childhood Center at our school district, where she now gets special education and speech.
In November, we received a diagnosis of PTEN Hamartoma Tumor Syndrome, which explained many of Brooklynn’s issues, including her speech delay, developmental delay, as well as her hypotonia issues. Tina and Shannon helped us through this diagnosis as well, and gave us tools we could use to make sure we provided our daughter with the best support and best possible chance to catch up to her peers, or at least not fall further behind. They gave us an amazing start to getting the services our daughter needs. As a full time working mom, the convenience of having them come to our house for services was undeniable. We will never forget all the FirstSteps program provided us. Your program makes such an amazing difference in so many childrens’ lives in so many ways. Your program gave my daughter the tools to interact with not only us, but other adults and peers. Thank you so much for your program.
Sincerely,
Beckie and Sam Palmer
Tuesday, April 30, 2013
Monday, April 22, 2013
My Testing Results
I received a phone call on Friday from the genetics counselor. My carrier testing results came back for the alpha-5 reductase deficiency. It showed that I am, in fact, a carrier for this deficiency. Which means Sam goes to the second level of testing for the carrier status to see if he is a carrier.
What does this mean as it stands right now? Right now, Brooklynn might have received the carrier gene from me. We would never have known we were carriers except for the fact that Brooklynn had a large cambut of genetic testing done, and this was an incidental finding. This means we do not have any symptoms of the disease, and the only way of passing this disease on to children is if we marry someone else (or produce with someone else I guess) who is also a carrier, at which point we would have a 1 in 4 chance of having a baby who has this genetic disease. It would only effect boys, because the hormones it effects is the male sex hormone, not the female hormones.
So if Sam's test comes back positive as also being a carrier, we are officially done having children. If his test comes back negative as being a carrier, we MIGHT be done having children. It is open for discussion. Either way, or fate as having more children is unknown, and leaning more towards us only being a family of 4. There is nothing wrong with being a family of 4. It is just a big adjustment to thinking that way. We always thought we would be a family of 5 or 6. I guess God might have other plans for us...
What does this mean as it stands right now? Right now, Brooklynn might have received the carrier gene from me. We would never have known we were carriers except for the fact that Brooklynn had a large cambut of genetic testing done, and this was an incidental finding. This means we do not have any symptoms of the disease, and the only way of passing this disease on to children is if we marry someone else (or produce with someone else I guess) who is also a carrier, at which point we would have a 1 in 4 chance of having a baby who has this genetic disease. It would only effect boys, because the hormones it effects is the male sex hormone, not the female hormones.
So if Sam's test comes back positive as also being a carrier, we are officially done having children. If his test comes back negative as being a carrier, we MIGHT be done having children. It is open for discussion. Either way, or fate as having more children is unknown, and leaning more towards us only being a family of 4. There is nothing wrong with being a family of 4. It is just a big adjustment to thinking that way. We always thought we would be a family of 5 or 6. I guess God might have other plans for us...
Brooklynn's Tonsils and Adenoids - GONE!
It has been a whirlwind these last couple of weeks. April 6th Izzy had her dance recital (videos were posted on facebook - I must say she did an AMAZING job!!). April 9th, I was able to move Brooklynn's ENT appointment up from the following Friday. She had been snoring A LOT more, and was definitely struggling to get air in throughout the night with her sleep. So we took her in to Dr. B's office. He took one look at her throat and said "Those suckers need to come out". We walked out of the office with her adenoid and tonsil removal surgery scheduled for Monday, April 15th.
Monday, we went in to the Outpatient Surgery Center. We arrived at 7:30, by 8:30 they were taking her back. She was not a happy camper - she knew something was going on when we had to change her out of her pajamas into a hospital gown. She was screaming and kicking. When the nurse took her back, she was reaching for us (that was hard!). By 9:15, we were talking to the ENT surgeon. He said she did well. He told us that her tonsils and adenoids were definitely large (even the anesthesiologist made a comment). He told us that her throat was probably 90% occluded by the size of her tonsils and adenoids, and that this was definitely the right decision.
We were able to see her by 9:30. They had to give her some racemic epinephrine breathing treatment because she woke up out of anesthesia with a barking cough (no news to us - if she wakes up upset ever she usually has a barking cough and anesthesia is no fun). Other than that, we were kept at the surgery center for 2 hours to pump her full of fluids and to watch her, and we were home by 12:30. She did amazingly well, with only really 1 bad day (the following day she didn't want to eat, drink, or take her pain medications until daddy got home from work). They told us day 5-7 would be hard days, but she has done an amazing job. I think it is to her benefit that her pain tolerance is ridiculously high. Only had to give her a few doses of tylenol throughout the weekend.
And I must say - listening to her sleep at night is AMAZING! Hardly any snoring, she is able to breath through her nose! you can tell her throat is still a little sore, because she refuses to open up her mouth (so I have not been able to get an after picture to compare to her before), and she continues to have trouble with her appetite. At times she is a little more fussy than normal, but that is to be expected. Overall, I am very excited we are through this surgery, and able to move on!
Monday, we went in to the Outpatient Surgery Center. We arrived at 7:30, by 8:30 they were taking her back. She was not a happy camper - she knew something was going on when we had to change her out of her pajamas into a hospital gown. She was screaming and kicking. When the nurse took her back, she was reaching for us (that was hard!). By 9:15, we were talking to the ENT surgeon. He said she did well. He told us that her tonsils and adenoids were definitely large (even the anesthesiologist made a comment). He told us that her throat was probably 90% occluded by the size of her tonsils and adenoids, and that this was definitely the right decision.
We were able to see her by 9:30. They had to give her some racemic epinephrine breathing treatment because she woke up out of anesthesia with a barking cough (no news to us - if she wakes up upset ever she usually has a barking cough and anesthesia is no fun). Other than that, we were kept at the surgery center for 2 hours to pump her full of fluids and to watch her, and we were home by 12:30. She did amazingly well, with only really 1 bad day (the following day she didn't want to eat, drink, or take her pain medications until daddy got home from work). They told us day 5-7 would be hard days, but she has done an amazing job. I think it is to her benefit that her pain tolerance is ridiculously high. Only had to give her a few doses of tylenol throughout the weekend.
And I must say - listening to her sleep at night is AMAZING! Hardly any snoring, she is able to breath through her nose! you can tell her throat is still a little sore, because she refuses to open up her mouth (so I have not been able to get an after picture to compare to her before), and she continues to have trouble with her appetite. At times she is a little more fussy than normal, but that is to be expected. Overall, I am very excited we are through this surgery, and able to move on!
Wednesday, April 3, 2013
Question Posed on PTEN World....
I follow PTEN World on Facebook. It is a place where the person who runs it posts updates on anything that could be associated with PTEN mutation (updates on cancer organizations, autism, National Organization of Rare Diseases. If you follow me on this blog, and you would like to stay up to date on issues that we might face throughout our journey with this PTEN mutation, like them on facebook. It opens my eyes to other issues, not just PTEN related issues. But yesterday they posted a question that hit home. "What is one thing you wish your loved ones knew about life with a PTEN condition?"
This got me thinking. I have probably said this over and over in my blog, so if you are tired of hearing my ramblings - don't read. But if you want to understand a little of what goes on in my braind - continue to read. What do I wish others knew? That when it comes to your kid, the unknown is scary. If it was me who had this mutation, I could deal with it. I would fear that cancer would take me away before my kids were grown, but this is a fear I have any way. I could deal with any pain, or problems socially I would face. But it's my kid. I fear that she will get a growth that will affect her - either her ability to be physically active, affect her ability to socialize with others, or makes her feel like others are negatively looking at her. I am afraid that some days her challenges might be hard for her to face.
I am fearful that as more research is being done, they will find this mutation is linked to more things. Right now, it is shown to be with developmental delays (she has a few of these), large head (we all know she has this), speech delays (she struggles with this but continues to make improvements). They are finding its' link with AV malformations (problems in the arteries and veins) and these can pop up at any time. She will probably need her tonsils removed. And we have all read about the tumor growths (benign and cancerous that she is at risk for). She is at risk for intestinal polyps, and so with every diaper change, I have to make sure I find no blood. This is our life from here on out. I have to be a step ahead of everything and catch stuff at the first sign of problems.
But they are doing more research. And they continue to find other things this might be linked to.
But than there is hope. With continued research, they will continue to find ways to treat the symptoms. They are doing research on a drug that some people are taking when they find out about cancer, and it slows the growth of cancer. So potentially, could there be a drug that wipes out her chance she will get a cancer? Potentially can this be obsolete, so when she is older, she doesn't have to worry about her decision to have a child herself? That she, herself, could be a mom and not have to worry what this means?
I am fearful for the day she starts asking me questions, and I won't have the right answers for her. I worry that her life will be filled with doctors' appointments, tests, etc and she won't know what it's like to be a "normal" kid. I am afraid of her having struggles in school, and if budgets are cut, will they cut special education and her ability to get services that she needs? The unknown freaks me out.
And I do struggle with this knowledge every day. I really do want my family and friends to know I am working on this. I really want to get to a point that I don't let it overwhelm me. But I feel like I have to stay up on the research. I have to read the journal articles. Because nobody truly knows a lot about this. So I HAVE to be the expert. So if I look like I am engrossing myself in it too much, I probably am. I don't want to miss any reports of it being linked to anything I don't know about and I miss the symptoms.
And it makes my eyes so much wider at work. The terms we use, the phrases we say. When parents are waiting for a test result that takes 6 weeks, we tell them not to worry. "Don't worry, we are testing for a genetic mutation that may affect your life forever - but I wouldn't worry until we have the results". Or when we use the phrasing "We don't know what it means, it could mean nothing, or it could mean she has x, y, or z" - we are setting these parents off into a world of unknowns, and it makes me fearful for them. It makes me want to hug them and say I am where you are. It makes me want to give them all the tools they would need on the outside so if this nothing does become something, they would know where to look. If it wasn't for where I work, I would not have found many of the resources we have found for Brooklynn. And I would feel helpless. And than I struggle because I keep my private life private (besides the blog) - I want to shout from the rooftops and open people's eyes to things that seem not so big (and honestly maybe it isn't so big and I just stress about it for no reason). I dont' know how to get our story out there. I don't want to blast it out, but I want to help another mom who might be struggling like me. Not saying I am where I could help. But eventually, I want to help others. I feel powerless right now, and probably because I feel so powerless over my own life.
So to my family and friends - I am adjusting. I would like to talk about it if you want to know about it. I am trying to adjust to this. I am trying to not let it engulf me. And if I ever dwell on it too much - you can knock some sense into me and say shape up! That's the long of it. My response to the question.
What is interesting is later on PTEN world, they posted as a family member or friend what do you want to know about PTEN? This made me think as well - what do others want to know? Are there any questions people would like to ask? If so, please ask. I probably won't have the answers, but maybe it would get a perspective or a question to bring me back to space. I feel like sometimes others don't want to ask, don't care to ask, I dont' know. But it is OKAY to ask. Just saying.
This got me thinking. I have probably said this over and over in my blog, so if you are tired of hearing my ramblings - don't read. But if you want to understand a little of what goes on in my braind - continue to read. What do I wish others knew? That when it comes to your kid, the unknown is scary. If it was me who had this mutation, I could deal with it. I would fear that cancer would take me away before my kids were grown, but this is a fear I have any way. I could deal with any pain, or problems socially I would face. But it's my kid. I fear that she will get a growth that will affect her - either her ability to be physically active, affect her ability to socialize with others, or makes her feel like others are negatively looking at her. I am afraid that some days her challenges might be hard for her to face.
I am fearful that as more research is being done, they will find this mutation is linked to more things. Right now, it is shown to be with developmental delays (she has a few of these), large head (we all know she has this), speech delays (she struggles with this but continues to make improvements). They are finding its' link with AV malformations (problems in the arteries and veins) and these can pop up at any time. She will probably need her tonsils removed. And we have all read about the tumor growths (benign and cancerous that she is at risk for). She is at risk for intestinal polyps, and so with every diaper change, I have to make sure I find no blood. This is our life from here on out. I have to be a step ahead of everything and catch stuff at the first sign of problems.
But they are doing more research. And they continue to find other things this might be linked to.
But than there is hope. With continued research, they will continue to find ways to treat the symptoms. They are doing research on a drug that some people are taking when they find out about cancer, and it slows the growth of cancer. So potentially, could there be a drug that wipes out her chance she will get a cancer? Potentially can this be obsolete, so when she is older, she doesn't have to worry about her decision to have a child herself? That she, herself, could be a mom and not have to worry what this means?
I am fearful for the day she starts asking me questions, and I won't have the right answers for her. I worry that her life will be filled with doctors' appointments, tests, etc and she won't know what it's like to be a "normal" kid. I am afraid of her having struggles in school, and if budgets are cut, will they cut special education and her ability to get services that she needs? The unknown freaks me out.
And I do struggle with this knowledge every day. I really do want my family and friends to know I am working on this. I really want to get to a point that I don't let it overwhelm me. But I feel like I have to stay up on the research. I have to read the journal articles. Because nobody truly knows a lot about this. So I HAVE to be the expert. So if I look like I am engrossing myself in it too much, I probably am. I don't want to miss any reports of it being linked to anything I don't know about and I miss the symptoms.
And it makes my eyes so much wider at work. The terms we use, the phrases we say. When parents are waiting for a test result that takes 6 weeks, we tell them not to worry. "Don't worry, we are testing for a genetic mutation that may affect your life forever - but I wouldn't worry until we have the results". Or when we use the phrasing "We don't know what it means, it could mean nothing, or it could mean she has x, y, or z" - we are setting these parents off into a world of unknowns, and it makes me fearful for them. It makes me want to hug them and say I am where you are. It makes me want to give them all the tools they would need on the outside so if this nothing does become something, they would know where to look. If it wasn't for where I work, I would not have found many of the resources we have found for Brooklynn. And I would feel helpless. And than I struggle because I keep my private life private (besides the blog) - I want to shout from the rooftops and open people's eyes to things that seem not so big (and honestly maybe it isn't so big and I just stress about it for no reason). I dont' know how to get our story out there. I don't want to blast it out, but I want to help another mom who might be struggling like me. Not saying I am where I could help. But eventually, I want to help others. I feel powerless right now, and probably because I feel so powerless over my own life.
So to my family and friends - I am adjusting. I would like to talk about it if you want to know about it. I am trying to adjust to this. I am trying to not let it engulf me. And if I ever dwell on it too much - you can knock some sense into me and say shape up! That's the long of it. My response to the question.
What is interesting is later on PTEN world, they posted as a family member or friend what do you want to know about PTEN? This made me think as well - what do others want to know? Are there any questions people would like to ask? If so, please ask. I probably won't have the answers, but maybe it would get a perspective or a question to bring me back to space. I feel like sometimes others don't want to ask, don't care to ask, I dont' know. But it is OKAY to ask. Just saying.
Thursday, March 28, 2013
Brooklynn's Developmental Evaluation Results
2 weeks ago Brooklynn met with the Autism Spectrum Disorder Team (which included a psychologist, a speech pathologist, and an occupational therapist - the developmental psychologist was not available at our appointment). Yesterday, I went in to meet with the team to see our results for the developmental and their evaluation on whether Brooklynn fit into the Autism Spectrum. It was a good meeting, lasted about 1 hour. We have been through a lot of this before (between the school district and other evaluations) so I was pretty confident that I knew what to expect.
First things first - I was very excited to see that they did not feel like she fit into the autism spectrum disorder category. They felt like on paper, she could have behaviors that look like she might fit, but when you meet her and she warms up to you, she does not display the characteristics of autism. She does too much eye contact, responds to your voice, attempts to get your attention, etc. They did state, however, that they feel like a big problem of hers is anxiety. She does not feel comfortable in new situations or with new people (as most kids don't), but hers is to the a higher extent since it is affecting her ability to interact with kids her age, and makes her shut down. On the Autism Coding system they use, which she showed no evidence of autism spectrum.
A big barrier to her is her speech. They evaluated multiple levels of speech, including her receptive (what she understands) and her expressive (what she says) language. Standard scores between 85-115 are normal. Brooklynn's score was 69 (ranking in 2%). Subset scores (they are combined to equal the standard score) range between 7-13 for normal. Her sentence structure was 8 (25%), word structure 2 (0.4%), and expressive vocabulary was 4 (2%) She had trouble answer questions and responding to things, which is below her age level. Her articulation score was also low at 68, ranking in 8%, making her raw score 54%. So all these numbers mean that she has a moderate to severe articulation disorder as well as a moderate receptive and expressive disorder. This is much different than when we tested her at Children's the first time, where it was only a mild. They felt it was due to the fact that at this age kids are learning at such a fast pace for language, and she was already slightly behind, so she is still working on her other skills, and therefore has just fallen behind her peers due to her inability to catch up at this time. Again, with speech therapy, hopefully she will get up to her peers.
Her "IQ" score was on the lower side of normal. She had things that she was variant on, ranging from impaired/intellectual disability to average. Her adaptive behavior scale was used to assess her functional skills. Her scores were on the borderline range. She was found to generally be functioning on a young 2 year old level. They told me that sometimes, they see these types of test results on children can potentially have more learning disabilities.
Occupational Therapy looked at her, and felt that she definitely shows some impairments in her skills. Her gross motor skills are at 87 score (30 month developmental age); fine motor is 57 score (24 month developmental age), and her self-help skills are 22 (18 months of age. She felt like she demonstrated deficits mostly in skills that required accuracy (she would start to tremble when she needed to use her fine motor skills), as well as visual motor skills, and they would recommend possibly getting occupational therapy involved at some point in her school, or even at Children's Mercy during the summer.
So overall, we have some new diagnosis-
1. Adjustment Disorder with Anxious mood - this could be the start of her symptoms for an underlying anxiety disorder, which will have to monitor her for, or she might outgrow as her language skills improve.
2. Receptive and Expressive Language disorder
3. Articulation Disorder
4. Functioning in the Delayed Range
So overall, it definitely makes me feel better that she is not autistic. I do struggle with the fact, though, that now we have this new diagnosis that there is not this huge support system for. I don't hear about anxiety disorders in young children very often. I hear about parents who have autistic kids, and there is a huge network of parents and resources out there for them. I feel some days that I am swimming alone in this large see of a child with special needs. I don't feel like we fit into any one category. I know that most kids don't, and I don't want to group her in, but it would be nice if I could find a network of parents who had similar situations. And I feel like I am alone in this adventure. I know there are lots of people out there who are dealing with different struggles with their children. Right now, Brooklynn is getting all the help she needs for her struggles that she is facing. But I feel like sometimes I am not getting help to get over my own personal hurdle of fear of the unknown. I will clear it one day, I just am not sure when.
First things first - I was very excited to see that they did not feel like she fit into the autism spectrum disorder category. They felt like on paper, she could have behaviors that look like she might fit, but when you meet her and she warms up to you, she does not display the characteristics of autism. She does too much eye contact, responds to your voice, attempts to get your attention, etc. They did state, however, that they feel like a big problem of hers is anxiety. She does not feel comfortable in new situations or with new people (as most kids don't), but hers is to the a higher extent since it is affecting her ability to interact with kids her age, and makes her shut down. On the Autism Coding system they use, which she showed no evidence of autism spectrum.
A big barrier to her is her speech. They evaluated multiple levels of speech, including her receptive (what she understands) and her expressive (what she says) language. Standard scores between 85-115 are normal. Brooklynn's score was 69 (ranking in 2%). Subset scores (they are combined to equal the standard score) range between 7-13 for normal. Her sentence structure was 8 (25%), word structure 2 (0.4%), and expressive vocabulary was 4 (2%) She had trouble answer questions and responding to things, which is below her age level. Her articulation score was also low at 68, ranking in 8%, making her raw score 54%. So all these numbers mean that she has a moderate to severe articulation disorder as well as a moderate receptive and expressive disorder. This is much different than when we tested her at Children's the first time, where it was only a mild. They felt it was due to the fact that at this age kids are learning at such a fast pace for language, and she was already slightly behind, so she is still working on her other skills, and therefore has just fallen behind her peers due to her inability to catch up at this time. Again, with speech therapy, hopefully she will get up to her peers.
Her "IQ" score was on the lower side of normal. She had things that she was variant on, ranging from impaired/intellectual disability to average. Her adaptive behavior scale was used to assess her functional skills. Her scores were on the borderline range. She was found to generally be functioning on a young 2 year old level. They told me that sometimes, they see these types of test results on children can potentially have more learning disabilities.
Occupational Therapy looked at her, and felt that she definitely shows some impairments in her skills. Her gross motor skills are at 87 score (30 month developmental age); fine motor is 57 score (24 month developmental age), and her self-help skills are 22 (18 months of age. She felt like she demonstrated deficits mostly in skills that required accuracy (she would start to tremble when she needed to use her fine motor skills), as well as visual motor skills, and they would recommend possibly getting occupational therapy involved at some point in her school, or even at Children's Mercy during the summer.
So overall, we have some new diagnosis-
1. Adjustment Disorder with Anxious mood - this could be the start of her symptoms for an underlying anxiety disorder, which will have to monitor her for, or she might outgrow as her language skills improve.
2. Receptive and Expressive Language disorder
3. Articulation Disorder
4. Functioning in the Delayed Range
So overall, it definitely makes me feel better that she is not autistic. I do struggle with the fact, though, that now we have this new diagnosis that there is not this huge support system for. I don't hear about anxiety disorders in young children very often. I hear about parents who have autistic kids, and there is a huge network of parents and resources out there for them. I feel some days that I am swimming alone in this large see of a child with special needs. I don't feel like we fit into any one category. I know that most kids don't, and I don't want to group her in, but it would be nice if I could find a network of parents who had similar situations. And I feel like I am alone in this adventure. I know there are lots of people out there who are dealing with different struggles with their children. Right now, Brooklynn is getting all the help she needs for her struggles that she is facing. But I feel like sometimes I am not getting help to get over my own personal hurdle of fear of the unknown. I will clear it one day, I just am not sure when.
Thursday, March 14, 2013
Developmental Appointment
Yesterday, we had Brooklynn's developmental appointment. It was at CMH South, and was a 2 1/2 hour appointment. We met with Dr. Little, who is a psychologist (mostly specialized in behavior disorders such as autism), speech specialist, and occupational therapist. We were supposed to meet with a developmental psychologist but she was out with a sick child, but I was told they got an appropriate evaluation they felt at this time, and that she has already been through "a gambut of testing". So she did a bunch of testing, and at first was very nervous, and she finally started to open up. I heard the words "anxiety" and that she "seems to be on the developmental play skills of a 2 year old". But I won't know any interpretation for 2 weeks. We got back 3/27 to get the evaluations. I am so nervous. I didn't hear the words autism, so I don't know if that is out of the picture, or if they felt her anxiety is due to autism. I have no clue. I will try to forget about everything until 2 weeks from now.
And not only do I have to wait for that, but I have another 6 week time frame to wait for.
Tuesday, I started the process of having my labs drawn again. This time, it is to find out if I am a carrier of the alpha-5 reductase deficiency, which was incidentally found with Brooklynn's microarray. This process starts with me, and can take up to 4 tests, and each test takes 6 weeks each to get results. So we will start with me, and then depending on my test we will see what the next step will be. This is pretty much to decide if we will be having more kids or not. If both of us are carriers, than we will not, if neither of us are carriers than we will. If one of us is carriers, that's up for discussion.
And not only do I have to wait for that, but I have another 6 week time frame to wait for.
Tuesday, I started the process of having my labs drawn again. This time, it is to find out if I am a carrier of the alpha-5 reductase deficiency, which was incidentally found with Brooklynn's microarray. This process starts with me, and can take up to 4 tests, and each test takes 6 weeks each to get results. So we will start with me, and then depending on my test we will see what the next step will be. This is pretty much to decide if we will be having more kids or not. If both of us are carriers, than we will not, if neither of us are carriers than we will. If one of us is carriers, that's up for discussion.
Wednesday, March 13, 2013
Brooklynn is 3!!
Dear Brooklynn,
So you turned 3 this last week. And boy it seem slike it has gone quickly. You have taught me more in 3 years than anybody ever has. You are so strong, fun loving, and excited about everything. You have achieved so much this last year. When you turned 2, you had a rough time with your communication, and now you are saying 3-4 word sentences. You are enjoying playing with your sister and cousins. You love to get dressed up in beautiful outfits, you love to twirl in dresses, you enjoy getting make up from your sister an dlooking "petty". You are such a strong little girl.
Your laugh is infectious. Your smile is amazing. When you see me or your daddy, you always come running to us and are so excited. You love to wrap your arms around our necks and squeeze tight. Sometimes, you just want us to hold you for a couple of minutes like that. You are strong willed - you don't do anything you don't want to.
You are learning how to do puzzles, we are working on your colors (but your favorite color is "yeyow" - anything is yellow to you :). You enjoy playing with Barbies, princesses, legos, and dress up. You look up to your sister, and try to follow everything she does. Your older sister adores you, and tries to take care of you. She is your second mother. You enjoy going to both sets of grandparents house. Your best friends are your sister and cousins. You love looking at books (but you hate for me to read to you). You enjoy pointing to the pictures and saying the words out loud.
I love everything about you. Even your tantrums where you throw yourself on the ground, and don't move, are adorable to me. You love to grab our faces and whisper in our ears.
Thank you for all you have taught me in your short 3 years. You have through so many doctors appointments, tests, and labs, and yet you still are the happiest child I know. You take everything in stride, and are always a laid back child.
I love you forever, mostest 'ostest, and from here to the moon,
your mom.
So you turned 3 this last week. And boy it seem slike it has gone quickly. You have taught me more in 3 years than anybody ever has. You are so strong, fun loving, and excited about everything. You have achieved so much this last year. When you turned 2, you had a rough time with your communication, and now you are saying 3-4 word sentences. You are enjoying playing with your sister and cousins. You love to get dressed up in beautiful outfits, you love to twirl in dresses, you enjoy getting make up from your sister an dlooking "petty". You are such a strong little girl.
Your laugh is infectious. Your smile is amazing. When you see me or your daddy, you always come running to us and are so excited. You love to wrap your arms around our necks and squeeze tight. Sometimes, you just want us to hold you for a couple of minutes like that. You are strong willed - you don't do anything you don't want to.
You are learning how to do puzzles, we are working on your colors (but your favorite color is "yeyow" - anything is yellow to you :). You enjoy playing with Barbies, princesses, legos, and dress up. You look up to your sister, and try to follow everything she does. Your older sister adores you, and tries to take care of you. She is your second mother. You enjoy going to both sets of grandparents house. Your best friends are your sister and cousins. You love looking at books (but you hate for me to read to you). You enjoy pointing to the pictures and saying the words out loud.
I love everything about you. Even your tantrums where you throw yourself on the ground, and don't move, are adorable to me. You love to grab our faces and whisper in our ears.
Thank you for all you have taught me in your short 3 years. You have through so many doctors appointments, tests, and labs, and yet you still are the happiest child I know. You take everything in stride, and are always a laid back child.
I love you forever, mostest 'ostest, and from here to the moon,
your mom.
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