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.

3.25.11

Lots and lots happening this week!
First of all, in my family several changes and prayer requests. My brother Isaac and his family moved up from Las Vegas on Tuesday and are in the midst of getting settled before baby Valor makes his appearance in the next couple of weeks. My brother Luther's wife had an emergency c-section of her twin girls on Wednesday morning at almost 27 weeks along. Emma and Grace are doing well considering, but need lots of care and prayers.
Aimee and I met with her Naturopath on Monday and are being referred to Neurology at Children's, because it appears that Aimee may be having seizures. Wednesday we had a Respiratory Therapist come over to teach us how to use Aimee's new suction machine. Should be really helpful! Wednesday afternoon we had her Occupational Therapy appointment and, again, Aimee was cheerful and energetic. Thursday we met with the Teacher of the Visually Impaired and the School District. We were brought several more pieces of equipment for Aimee's collection. I am seriously considering getting rid of our spare bed and making that room into a gym for Aimee...if only you could see all the pieces she is collecting! There may not be room for Ed and I to live there soon! I also talked with the school district about adding Speech Therapy and Physical Therapy. There is a strong possibility that both of these may begin over the summer. They are strongly encouraging us to start her in a school program this Fall (already!?!). Not sure how we feel about that at this point.

3.20.11

3.17.11
Aimee playing with her piano from Grandma Starla

3.18.11

First things first, we are so blessed! Aimee received a check yesterday from a Komo 4 news viewer for the entire cost of the chair. All of the funds raised through the baby photo contest will be put into Aimee's medical expense account to cover her upcoming costs. We are just so thankful for the active support we have received from all of you. It means so much to us that you care about Aimee and took the time to show it. What a weight has been lifted off of our shoulders!
I've attached both of the news casts below, just in case you haven't had an opportunity to view them yet.





Updates from this week:
Aimee and I had a long visit with Opthalmology on Tuesday. According to this doctor, Aimee has great vision and can see perfectly. The signal input to the vision center in her brain is working fine. He believes that she has a form of CVI (cortical vision impairment) called Sensory Mobility Disconnect. Essentially what this means is that the information is coming in to her brain, but the "signal strength" is so low that the information is not getting to her brain stem. The brain stem would typically send a signal then to the eyes and tell them to follow an object or to look at a person over there, ect. We are going to have a test done in a couple of weeks to see if her brain stem is a part of the issue or if it is just the connection between the two.

3.11.11

-Picture of the chair, but Aimee's will be blue-

Aimee and I met with Physical Therapy's Durable Equipment Specialist at Children's on Wednesday morning. I was so pleased with how attentive and detailed he was. We were able to compare a few options, but ended up going back to the same chair we tried to order last year. I am so thankful that we will be ordering through Children's, because once we have the chair they will completely customize it to her needs.
When the appointment was over, he said that they should be able to get us a chair in about 4 months. Uhh. I felt like I was going to cry. Seriously? Thank goodness, because I felt disappointed enough to say...are there any other options? Here we have been waiting 6 months already, I wasn't sure I could make it 4 more. Then an amazing thing happened. He said that if I could pay for it up front they would be able to get it to us in about 6 weeks. Thank the Lord for this amazing fundraiser that enabled me to say "YES! I can!". Hallelujah! I can hardly wait to get the chair!

We were also able to pick up Aimee's new hearing aid molds from Audiology while we were there. They fit great. Not the right color and you can't really see the stars, but I guess that isn't really the point. :)

Wednesday afternoon was Aimee's Occupational Therapy. Aimee worked really hard and the therapist was very pleased with her efforts.

Thursday afternoon was Aimee's 2 year check up at the Naturopathic MD. We love this doctor so much. Aimee is growing quickly, as you can easily see. She is in the 95th percentile for height and about 60th percentile for weight. Her head circumference has increased by a half of a centimeter in the last 6 months, which is a very sad amount, but at least it grew!
Other notes from this appointment:
-He is going to write up a prescription for a suction machine, which I am really happy about. Hopefully that will prove helpful, especially for the times when Aimee is sick.
-He is also recommending that we begin Physical Therapy. It looks like Aimee's spine is beginning to curve, as she is always leaning/scrunched in one direction. I am hoping that having her fully supported in her wheel chair will help with this as well.
-He also encouraged us to ask the school district about starting Speech Therapy, now that Aimee is beginning to respond and listen.

Aimee is always keeping us on our toes with new things!

Please pray for us this week for direction. Ed's commuter car for work has officially died. We know God has a good plan for us and we are praying that He would show us what steps to take for a vehicle.
Also, we are pursuing having Ed's tonsils removed in pursuit of getting him good, quality sleep. We are working towards finding out if this procedure would be covered by our insurance. Thanks for your prayers!

-Aimee's 2nd Birthday-