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.