Neurosurgery Appointment

Brooklynn had her neurosurgery follow up on March 6th. We had a rapid MRI done, and this time we didn't even have to meet up with Dr. H, but instead saw his Nurse Practitioner. She told me that the MRI looked good and that Brooklynn's ventricles have looked the same, and are not enlarged. I asked about symptoms for AVMs and Tumors (which she has a small risk for due to her Gene mutation), and she told me if she starts having seizures, becomes clumsy, complains of headaches, or other enurological symptoms I need to probably bring it up to her pediatrician and we might need to evaluate her for these in her brain. Other than that, we have been officially RELEASED from neurosurgery!! WOOHOOO!!!!

Girls' Yearly Check Up with Pediatrician

Today we had the girls' pediatrician appointment with Dr. B. I have to say, every time I go, I thoroughly enjoy this doctor. She answers my questions before I can even ask them. She is thorough, and she talks to Izzy and teaches her things that I struggle with. The check up ended up going pretty good. It's always nice to see how much the girls have grown and that everything is okay. We finally got to go to a doctor with any new referrals. :) That is always a plus.

So we will start with Izzy:
Height 45.25 inches 93%ile
Weight 41.0 pounds 60.04%ile
BMI 14.08 Index 16.06%
BP 111/63 (YIKES! they rechecked it though and it was 96/62 - so much better) I guess she takes after daddy and has anxiety at the doctors.
Temperature 98.6
Heart Rate 100/minute
Respiratory Rate 20/minute
Hemoglobin 12.2 (so normal)

She taught her stranger danger, answered some questions I had about her stomach pains (she feels like it might be behavior, but need to make sure she is regular in her bowel movements) - decrease dairy, carbs, etc (so pretty much everything Izzy enjoys eating) to try to supplement more Fiber into her diet. She had to get her kindergarten shots (DTAP and IPV in one shot, MMRV in another). Izzy cried and was upset, but at least this time she did't scream at the top of her lungs "I DON'T WANT A SHOT!!" so we made improvements. We walked out and she kept crying "my arm hurts, my arm hurts - but I didn't scream this time". I was proud that she is learning how to handle her emotions.

Brooklynn:
Height 39.5 inches 96.09%ile (she grew about 4 inches in 1 year!)
Weight 37.2 pounds 94.38%ile
BMI 16.76 Index 76.63%ile
BP 74/55
Temperature 97.9 F
Heart Rate 120/minute
Respiratory Rate 24/min

Dr. B said that it is a good thing she is so tall because that helps decrease her body mass index percentile (anything over 85% is concern for obesity). She said that Brooklynn is the average size of a 4 year old. We talked about her asthma control, and that we have been off Flovent for <1 week but so far we are doing okay. She said that it's okay to wean her off, and just start back up if we need to. Also, we need to start allergy medicine. I updated her on her developmental evaluations from the school district and that we have an appointment tomorrow with neurosurgery and developmental at CMH next week. She said to just ask them to fax a letter to her so she can stay up to date on what they determine. She did say it might not be a bad idea to contact the Cleveland Clinic (which has a PTEN Clinic) just because they might be able to provide us with an idea of what is commonly seen, even though she is not developing too many concerns. She said right now we are having to go between different specialists, but not all of them are tied together, and if we can get a clinic that can tie everything together and give us a clear action plan on what to watch for and what our concerns are at this point. She said that it might be able to just be a contact, or they might even ask for us to come up there.

Overall it was a nice appointment. Validation for some of my questions, and also it was nice to hear "everything looks good". Those are always a nice dah.

Unfortunately, though, with this appointment, Brooklynn was late on her last day at school - and we totally missed bringing snacks, and they were going to celebrate her birthday today. Hopefully she was able to enjoy the rest of her last day at Hilltop. Today is a little bit of a sad day because we will be moving on to a different school. It will all work out in the end.

Happy 5th Birthday Izzy!

Isabella (or Izzy as you like to be called),
Wow I can't believe you are already 5. I know it is cliche, but it seems like only yesterday that I held your little tiny body in my arms, and fell in the minute my eyes laid on you. You have had my heart in your hands ever since. Every day you grow and learn, and every day my love for you grows. You have taught me more than you can ever imagine in 5 short years. You are full of so much love and enjoyment about life. Your curly hair and dark brown eyes are amazing. Your smile with two big girl teeth growing in on the bottom is infectious. Your laugh just makes any bad moods melt away. Your bear hugs make my heart melt even more.

You are always there to help, you want to try to learn how to be a big girl, and want to do big girl things. You are 5 going on 16. You love applying makeup, and occassionally you ask me to straighten your hair. You have a sense of humor. You are very concerned about doing the right thing, and are asking for permission often. You are learning your limits, and when it is okay to say no, but occassionally need reminders. You are full of adventure, and love to do things outside. There is nothing better than sitting reading you a book, or listening to you read to me, or cuddling and watching a movie with you and your sister.

What are your likes? You love playing with your little sister. You are the best big sister anybody could ever hope for. You encourage her to try new things, you are willing to share (most of the time), you want to teach her, and you are always there to give her a hug when you see that she is upset or sad. You enjoy dance. You are always dancing around the living room, in the backseat when you hear music, or in dance class. You love your Wiggles and Giggles class, and are learning the skills of ballet and tap. You are very excited for your recital coming up in a month. You love to sing. In fact, you sing any time you hear a song come on. Most of the time, you learn the songs and are able to sing them. You sing about what you are doing. You ask me if you can "sing this song" when one of my songs come on the radio. You love to play with your Barbies, your legos, your baby dolls, and you like to pretend you are a waitress, I am the chef, and your sister is the customer. You have such an enthusiasm for learning. You are always wanting to "do your homework" (which means you either are coloring in a book, practicing writing, practicing reading, or doing a workbook). You stress out when I ask you to get ready for bed if you are not quite done. You have an artistic side to you, and love to draw, and you also love practicing your letters. You love to make new friends. You go any where and you usually walk out with a new friend. You are very personable, and are always wanting to help others.

What are your dislikes? You still do not like things in costume (such as Mickey, Snoopy at WOF, Santa, the Easter Bunny). You pretty much go screaming the other way.


What you Have learned: You are learning to count - and can make it up to 39 without help. After that, you just need assistance with remembering the big number (40, 50, 60, etc), but can count between those numbers). You can write most of the letters, but need a little assistance with the bigger letters. You are able to recognize all your letters, and can write them all out (and you are now working on your lowercase). You are able to start putting words together, and are learning your prereading skills. You are learning what sounds the letters make, and sometimes can figure out how to spell and/or read a word just by sounding out the letters. You can write your name, Brooklynn's name, mommy, daddy, nana, papa, mason, sawyer, mia, sugar, and some other words with assistance. You are learning to use your words when you are upset. You tell me "that makes me very angry", "that hurts my feelings", and occassionally I have heard you use the phrase "that breaks my heart". You are learning how to do a cartwheel, how to stand on your hands, how to hopscotch, and even how to ride a big girl bike (you are able to brake using both the pedals and the handlebar brakes.

You truly are amazing Izzy, and I am very excited to see how much you grow in this next year. This year will be a big one - you will be starting Kindergarten in the fall. You will graduate to a big girl dance class. You will be trying some new and exciting things this year. I am very excited that I get to see all that you are becoming, and that I get to say that I am your mom. I thoroughly enjoy every second I have with you (even those trying times when you ask me the same question 10 times, or don't take no - I have to say you are definitely persistant) :). I never thought it would be possible, but my love for you grows every day. I thank God every day for this journey I get to take with you.

Love you always and forever, love you mostest ostest, from here to the moon and back,
your Mommy

My Lab Results

So I received a phone call yesterday that my genetics testing came back negative!! So this means that Brooklynn just had a random mutation that started with her. Which means we do not have to worry that Izzy has this mutation (unless we have the worst luck ever and both of our children have the mutation that 1 in 200,000 people have). And this means that Sam and I can seriously start talking about whether we want to have more children. Izzy keeps asking for a baby brother (she says she would be okay with a sister), and we wanted to have one more (if not 2 more) children. So now we have to weigh the risk of me carrying another child (possibility of preterm labor again, me having to get weekly injections, possibly having weekly-monthly ultrasounds to follow my cervix, possibility of being on bedrest, etc). Hoping that those issues will be obsolete since we have had a lot longer time between children (I got pregnant with Brooklynn less than 2 years after having Izzy). So we will see what life throws at us next.

And now we can truly start processing our situation. We know now that Brooklynn will be the only one at this time who needs yearly exams and testing. Poor Brooklynn - but I know she is one tough cookie. She is so calm, relaxed, and easy going that I know she is going to be strong enough to handle all the crappy things she has to endure. Now I just have to be able to be strong enough on those times she might not feel like she can.

Newest research article

This is for my own reference. Mom I would not recommend you read this article.... It is a little intense and a lot of medical jargon but has new recommendations for screenings...

http://jmg.bmj.com/content/early/2013/01/17/jmedgenet-2012-101339.full

IEP Meeting and Orthotics

We picked up Brooklynn's "hotdog" inserts for her shoes today - and so far she is not even noticing a difference with them in her shoes! So hopefully this will help with her flat feet and her slight hypotonia in her lower legs.

Today we also had Brooklynn's very first IEP meeting. It lasted a lot longer than I expected. In the meeting was the Early Childhood Center Coordinator, the Special Educator Case Manager, the speech therapist, the Physical therapist, and me. We reviewed all of the concerns that were brought up in the evaluation meeting, and than discussed the Goals. These Goals were mostly put together by the case manager, based on our evaluation meeting. I am going to put them down here, just so that I have a record of these goals, but feel free to skip over them if you have no interest in them (they are after all the other journaling for today).

So after we reviewed the goals, we talked about the plan of action. Speech feels like she would benefit from 90 minutes of speech (which is up from 60 we are getting from FirstSteps!). The state allows a total of 720 minutes of special education services. So here is where we found out if she would be in the preschool or special education section of the school. They determined that due to her issues with socialization, interaction, speech, ability to transition, etc, they felt like she would benefit from being the SPECIAL EDUCATION classroom, 4 days a week, 3 hour days. So we will be pulling her out of Hilltop Preschool and putting her into Early Childhood Center as of 3/7 (the day after she turns 3 years of age).

This is where I tear up a little (not really but it's a hard one for me). I know this is what she needs. But I also know that she is doing AMAZING and making so much progress with her teacher Miss Cori and Miss Jennifer at Hilltop. But the problem is that she is doing so much better with THEM (such as allowing them to ease her out of transitions, work with them on art projects, etc), but she is still having a lot of problem with associating and interacting with her peers. She is definitely awkward around children (or just completely ignore them) unless they are her family that she sees all the time. You put her next to an adult, and she is the friendliest person in the world! She says hi to every adult that walks by.

We also found out that we will be allotted however many hours she needs during these school days for an individual to work with her (such as a para) during times when she has the most trouble (so if she needs 1:1 attention during recess, during circle time, etc, they will have someone available to help assist her). She will have occupational and physical therapist who will be consulted as needed, and if we need to initiate services with them, we can.

So we are going to get the full throttle assistance through the school district. Now I don't feel so bad paying all those Liberty taxes :) Because we will definitely be utilizating a lot of these services.

Goal 1. To increase adaptive behavior skills Brooklynn will distinguish betwen food and non-food items, clean up when asked, and correctly answer 'yes' or 'no' when asked if she needs to use the bathroom on 90% of opportunities for 3 data days.
a. Will tell if an item is "food" or 'not food' when presented with pictures or real life items on 9/10 opportunties for 3 data days
b. Will clean up (toys, snack, etc) when asked with one or less prompt on 90% of opportunities for 3 data days.
c. Will correctly answer 'yes' or 'no' when asked if she is wet or dirty on 90% of opportunities for 3 data days.

Goal 2: To increase social skills Brooklynn will initiate greetings/closings with familiar peers and adults, stated her name when asked, and appropriately communicate negative emotions on 90% of opportunities for 3 data days.
a. Initiate greetings/closings with familiar peers and adults with one or less prompt
b. State her name when asked
c. Appropriately communicate anger and sadness by using her words rather than screaming or tantruming

Goal 3: To increase play skills Brooklynn will demonstrate parallel play and request needed items in play on 4/5 opportunities for 3 data days.

Goal 4: To increase pre-academic skills, Brooklynn will match and sort by shape and color, identify objects by their use, and following directions related to learning activity with 90% accuracy for 3 data days.
a. Match by shape and color when requested
b. Sort items by shape and color
c. Identify 50 items by their use

Goal 5: Increase pre-academic skills Brooklynn will demonstrate attention to a learning task by looking towards the teacher or participating in the activity for 5 consecutive minutes for 3 data days.
a. Follow a direction related toa learning activity.
They will also add something about compliance

Goal 6: Speech and Language - Brooklynn will improve expressive language skills by using 3-4 word novel utterances in different word combination structures to express a variety of pragmatic functions, such as requesting, commenting, answering questions, gaining attention, negation in 8/10 opportunities in 3/4 data collectiond ays.

Brooklynn will improve receptive language skills by following a variety of 1-2 step directions containing spatial concepts; identify objects or pictures objects when given a description (function, feature, class); demonstrate comprehension of age level pronouns with 80% accuracy in 3/4 data collection days.

Brooklynn will increase overall intelligibility by producing age appropriate sounds at the elicit level with 80% intelligibility to an untrained listener.
a. Brooklynn will produce initial, final, and medical consonants at the elicited level.

Hurdle jumping

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

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

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