4.29.11

Hard to even know where to begin filling you in on this past 2 weeks.

Hormone Test:
A few weeks ago we had met with Endrocrinology and had a hormone test done to determine if the signal telling Aimee's body to begin puberty was coming from her brain. That test came back normal, which means that the signal is coming from the cysts in her ovaries. We will be monitoring these and deciding the appropriate course of action. If they continue at the same rate, we may consider having the cysts surgically removed.

EEG:
Yesterday, Aimee and I met with the Neurology department to review the EEG she had done two weeks ago. Very sadly the test showed that Aimee is having multiple types of seizures. She is having general tonic seizures, which involve the whole brain at once and thus her whole body. These are what we originally took her in for and what we had always considered to be panic attacks/startle reflexes. She is also having localized seizures, which just involve one part of her brain at a time. These ones we did not know about at all.
After discussing the options and risks with the doctor, we decided to start her on a couple of seizure medications. I am VERY disappointed and terrified to do this. We have done so well at avoiding medications up until now, but it seems we need to go this route for now. We will be building up the doses on these over the next few months and watching her reactions and changes. Praying for wisdom to be able to tell what changes are due to the medication. There are things that she does, which could be seizure related, that we are not even aware of at this point.
We will also be taking her in for another sedated brain MRI in 2 months since she has not had one since she was 10 months old. This will give us a look into how her brain has developed since that time.

Otolaryngology:
We met with the Hearing Loss Clinic for several hours last week, which turned out to be appointments with an Aural Habilitation Specialist, Psychiatrist, Audiology and Otolaryngology. The only item of note out of this is that we will be having a CT scan done of her ears. They believe it is most likely that her hearing loss is related to her delayed brain development, but, just in case, they would like to rule out any other major potential causes.

Naturopath:
Her ear infection cleared up and her ear drum healed nicely. Just hoping that we can recognize the signs of an infection next time before it gets that bad.

TVI:
We met with the Teacher of the Visually Impaired (TVI) last week and discussed the characteristics and new research regarding CVI (Cortical Vision Impairment). This was really helpful and fascinating. The TVI wrote up a report based on Aimee's current abilities and gave her a score in each area that is typical of CVI kids. For the most part she is starting at square one with very few resolved issues, but it is really, really helpful to have an understanding of what she can do. This report also gave us specific activities and goals that will help improve these areas of challenge.

School District:
This week Aimee and I met with the school district to discuss starting Aimee in a two year old classroom this September. While I never pictured myself sending my kids to school, especially so early, I am beginning to see how this could be a real benefit for Aimee. She would be in a fairly small class (around 10 kids) and would have the opportunity to learn how to create relationships with peers. It would be a very part time program that I would be able to be as involved in as I want. Before I decide I am going to go visit one of the current classrooms, but I am leaning towards participating.

Wheelchair:
We got the word that Aimee's chair shipped earlier this week to the medical supply company in Seattle. We tentatively have an appointment scheduled for the end of next week to have Aimee fitted for the chair and to take it home! Even if we can't get it by then, we will definitely have it very soon!

Ed's Tonsillectomy:
Ed had his tonsils removed a week ago Monday. He is starting to get back to his normal self, but still feels like he has a bad sore throat. He did end up having to take a week off of work and endure a lot more pain and a lot longer recovery than we had originally anticipated. I am pretty confident that it is going to be totally worth it and that he will have much more energy once he is fully himself again.

Easter:
We had a wonderful Easter weekend and got to meet our sweet nephew Valor. We also got to do a little easter egg hunt for his older brother and sisters. What a fun time!
We are so blessed with wonderful family!

4.15.11

-Finished our first run together!-

We met with Feeding Therapy in Seattle on Monday. Aimee played a convincing opossum act through the appointment, but I was still able to get a few lip and jaw exercises to start practicing with her at home. They are not quite ready to do another swallow study on her yet, but would like to see her 1-2 per month to work on increasing her tongue and jaw movements.
Monday I noticed quite a bit of blood around Aimee's hearing aid, so I took her in to see the Naturopath on Tuesday morning. She had a sad cold last weekend, which apparently had caused an ear infection. Unfortunately, the pressure built up too much and caused her ear drum to rip. So she is on antibiotics to clear up the ear infection and we'll go back on April 26th to make sure the drum is healing.

Wednesday the local Physical Therapist joined in on Aimee's Occupational Therapy at home. She came to evaluate Aimee because of the concern of her spine curving. She said that Aimee may need to have a brace at some point to prevent future surgery, but for now we will just do our best to keep her spine straight with positioning and exercise. She also recommended several other pieces of equipment for us to purchase (oh goodie! haha). We will review them all with the OT next week and see what actually makes sense for Aimee at this time.

-Trying (or not) to sleep during EEG-

Thursday Aimee had her first EEG to determine if her episodes are seizures or not. They wanted to have a portion of it with her awake and a portion asleep. I wasn't at all concerned about the sleeping portion, I figured after the stuck 29 electrodes to her, she would be out like that...well, what do I know!?! She stayed awake for the whole thing! Oops. They had done a flashing light in her face at the beginning and she was so excited by it that she spent the rest of the time smiling and kicking her legs. It sounds like we may have to repeat the test, but we'll know more in about a week.

Ed is going to have his tonsils taken out on Monday, which is going to be a bit more intensive than we had originally planned. They advised him to take 1-2 weeks off from work...not the 1-2 days that we were thinking. I'm a little worried about loosing my helper for that long of a time and gaining a new patient! The goal of this though is to get him good, quality sleep. It isn't guaranteed to work, but we are very hopeful that it will at least cause improvement.

4.8.11

Well, this was a bit of a heavy week for us.

We met with Endocrinology on Monday, which turned out to be much more than expected. I was actually a bit embarrassed to even be having a follow up with that department. It seemed like most of the issues, primarily the breast buds, were decreasing. I thought, this will be so fast. I'll just go in, say "yep things are better" and then leave.
Unfortunately, the bone age test results were not as normal as I had originally understood. She had the test done at about 20 months and the results show her growth plates to be at about 30 months. What this means is that her ovaries are producing too much estrogen, causing some affects in her body that mimic puberty, which we have to stop. What we need to know from here is if it is her brain telling them to produce it or if it is the cysts, which we saw on her ultrasounds, that are producing that amount. We ended up staying for several hours to have an additional hormone test done, which we will hopefully get the results of next week. That test will tell us if it is her brain, although it is more likely that it is the cysts. We'll be continuing to track with this department as we decide what the best course of action is for keeping her young. :)

Thursday we met with Neurology regarding the possibility of seizures. Again, I went into this appointment with unrealistic expectations. I was really hopeful that they would send us away with a quick "nope, not seizures". Instead, they said we are probably correct and scheduled Aimee go come back next Thursday for an EEG. This is a fairly simple test, that she does not have to be sedated for (hooray!). They just hook her up to like 30 electrodes and check the brain wave/electronic activity in her brain. They said because she is severely developmentally delayed, no matter what, the test results will be abnormal. So we just have to hope that they can get enough information in this short test to see what kind of abnormal.
Of course, to top it off, they felt the need to inform us of all the detrimental affects and possibilities with seizures. Ugh. I know, they're just doing their job, but do I have to know all of that!?
We will go back in 2 weeks after the EEG to discuss the results. If it is seizures, we will then have to decide what type of treatment plan we want to pursue or are allowed to pursue. Really hopeful that we will be able to avoid medication.

On a happy note, we are so loving having my brother Isaac and his family in Washington again! We are very blessed to be close to them for this next season. Baby Valor will be here any day now!

Aimee loves her Auntie Jen and cousins!

4.1.11

Call me crazy (not to my face), but I think Aimee is different since the photo fundraiser. How she would be so affected by it, I can't quite understand. Yet, since that time she has been more energetic, looking around(!) and VERY talkative! I really had no idea that our worry was affecting her at all, let alone to this extent. Wow! Yet another reason to say 'Praise God'! His goodness is never ending.

Wednesday, Aimee and I got to have the TVI (Teacher of the Visually Impaired) come at the same time as the OT (Occupational Therapist). This was primarily to figure out the logistics of her new light box, how to position her appropriately to use it. Yet another thing that will be much easier once we have her chair (and another thing taking up space in our little living room).

Thursday, we went to see Ophthalmology again for an Eye Movement Study. This is supposed to show whether or not Aimee's brain stem is working appropriately. Last time we attempted this study was just before Aimee's 1st Birthday and it did not go well (See post dated 1.8.10). This time, she was able to stay awake and fairly attentive through the whole study. It is a really weird test, in my opinion. They stick us in a dark room with a big screen on one wall. They put special goggles over her eyes with a camera on both eye. Then they spin us around in circles and watch the movement of her eyes. They also would flash black and white stripes on the screen and watch her movements. I felt sick the whole rest of the day from all of that spinning and I knew it was coming! Poor Aimee had no idea what was going on!
From this test, we were able to determine (well the doctors were able to determine) that her brain stem is functioning well. So we have narrowed down the visual issues. Her eyes, vision center and brain stem work great. The disconnect is happening somewhere in the middle brain after the signal reaches the vision center and before the brain stem. This doctor left us with a "huh, it is really interesting, but be realistic, it won't improve from here". I'm choosing to follow what the TVI is telling me...she is very hopeful with the right stimulation her brain will be able to build stronger pathways. Thankful to have realistic doctors, but even more thankful for hope! We want her to be able to not just see, but be able to interpret what she sees and to be able to tell her eyes where to look. That is what she is designed to do!

A few exciting things are coming. One is we are going in on the 11th to meet with the Feeding Therapist. The second is that on the 7th we will have a preliminary appointment with a Neurology Nurse Practitioner to decide if Aimee should be tested with an EEG for seizure activity.