6.18.11

Listen to the MUSTN'TS, child,

Listen to the DON'TS

Listen to the SHOULDN'TS,

the IMPOSSIBLES, the WON'TS

Listen to the NEVER HAVES,

...Then listen close to me-

Anything can happen, child,

Anything can be.

-Shel Silverstein-

Ed and I took vacation this week, which allowed him to come with me to a couple of appointments. I knew it would be wonderful to have his company, but it turned out to be really important that he was there with me.

Monday we visited the school district, where we are considering enrolling Aimee in the Fall. We met the teacher of the 2 year old class, the therapists and the nurse. We were able to see the classrooms, the therapy room and actually visit a class for a few minutes. If anything, it actually made me more hesitant to put Aimee in school next year. The class is primarily made up of students that have autism, speech delays, or motor delays. There is only one kid in the school this year that has down syndrome. It has been a couple of years since they had a student with a g-tube and they have no students that are any where near as severely delayed as Aimee. It is really hard to imagine her getting much benefit from being in this crazy, loud environment. We have decided to try out putting her in the program this Fall for 2 months. We'll see what the class dynamics are like and if she is able to get comfortable enough in the environment to benefit from it.

Ed and I were able to stay down in Woodinville for 2 nights on Monday and Tuesday. Aimee got to play with Grandpa Steve and Grandma Starla for 2 days and I'm sure had a great time. We had so much fun eating yummy food (The Barking Frog was delicious!), drinking lovely wine (well, just Ed...but I got to smell it.), and enjoying uninterrupted time together. It was delightful!

Thursday, we met quickly with Audiology to get Aimee's new hearing aid molds fitted. For some reason, they scheduled us an appointment with Audiology on the 6th floor at the same exact time as Genetic Neurology on the 4th floor. It added a new fun dynamic to making it to multiple appointments. :)

Her second appointment, with Genetic Neurology, was with a specialist who focuses on hard to diagnose cases. He spent a few hours with us going over her history and observing her behavior. He said that he would describe Aimee's difficulties as a birth defect on the nerve level. He believes that 5 years from now they will be able to diagnose which gene was affected (he is almost positive that it is genetic). He said they are just now able to look at 95% of the chromosome abnormalities, but still don't know how to interpret everything that they see. They have already banked her DNA, but they took both of ours as well and entered us all into research studies. This doesn't really mean anything for us, because it could be years and years before they ever contact us back about research. He also thought of one other clinical test to try for her and then...well that's it for now.

He did say that he is fairly certain that Aimee's situation was a case of genetic mutation, not recessive genes. This would mean that a chance for recurrence in future children, according to his estimation, would be around 5%.

We have never had any doctor talk to us about Aimee's future before. It always seems like they are unwilling to commit. This doctor, however, felt that it was important for us to know what they expect from children that have such severe cases. He wants us to discuss how we feel and what we would want to do in the future if (or when, as he put it) difficult life and death decisions have to be made.

So, because Aimee has had so little progress and is already 27 months old, they expect her stay at this level for the rest of her life. There may be about the same amount of progress that she has already achieved, but that is all. He said that due to secondary causes (seizures and pneumonia), they see about 50% of kids like Aimee make it to their 10th birthday. They give about a 15% chance of making it to 20 and it goes down from there. Although Aimee has been really healthy and has had no pneumonias to date, they look at it as only a matter of time.

Although I do not believe in looking at her future based on these percentages, I don't want to ignore the warnings that they are giving me. We were surprised to hear that the lifespans of these children are so short. 15% chance of becoming an adult? That isn't great odds. We do want to be aware of these dangers, but we also know that God created Aimee and has a plan for her. We know that she touches other people's hearts. We don't want to allow fear to tell us that we need to protect her from sickness by not allowing her close to others. Yet, we do not want to be unwise and cause her unnecessary risks either. Definitely a life perspective changing day!

From here this Genetic Neurologist is referring us to meet with the Pulmonary Clinic and to potentially have a sleep study done for Aimee. Although she has always been a good sleeper, her excessive sleep patterns could be a sign of sleep apnea or other problems. He is also concerned about the sometimes irregular breathing that I described.

He will also be reviewing the results of the brain MRI that Aimee has scheduled for a week from Tuesday. They want to be sure that there is no deterioration in any areas of her brain and to see how much development has occurred since she was 8 months old. We are primarily having this MRI done for the benefit of the Neurology doctors, would want to see from the seizure standpoint how her brain looks.

6.12.11

Choosing thankfulness!

Things I am thankful for about Aimee:
Her smile
That she rarely gets sick
That I can put her hair in pigtails
That when she wakes up in the middle of the night, she plays
That every morning I get to spend an hour rocking her while she eats breakfast
That God provides for all her needs
That she is delightful to be with and to look at
That God chose us to be her parents
That we have so many friends and family to support us
AND...
That Aimee is a BIG SISTER! We are so honored that God has entrusted us with another child to love. We are anticipating their arrival around Christmas time. :D Lots of reasons to be thankful!

So onto the news.

We received the response letter to our application for financial aid through children's this last week. Unfortunately, we were only partially approved for this next year. We will have to pay the first couple of thousand up front. Not exactly sure why this change took place, but we are still so thankful for financial aid. That first couple of thousand has already been provided for through the photo contest and is really nothing compared to how much is spent through the hospital on her care over a year. In fact, this month she will well exceed that amount several times. God is always taking care of us.

We have decided to begin speech therapy next week. It will add another appointment to our weeks, but I am anxious to work on her ability to communicate. Primarily I would like to teach her that she can make choices and express them to us in some way. It will be really interesting to see what next steps we can take to get us there.

Tomorrow Aimee and I will be observing a 2 year class similar to the one the school district would like her to be enrolled in for this Fall. This will give us an opportunity to meet the potential teacher, school therapists and nurses. Really not sure if putting her in school is the right choice or not. Praying that a glimpse into their activities will give me insight.

We applied this week to attend a weekend conference at the school for the blind in Vancouver, Wa. According to Aimee's OT this is a really good learning opportunity that they only approve 8-10 families for each year in our state. We would stay in the student housing and learn from other families of visually impaired kids. Hoping that we are an approved family.

It has been 1 year this week since Aimee failed a swallow study and was changed to tube feedings. It is still sad to me when I remember how much she enjoyed eating and how fun it was for me to come up with combinations of pureed foods for her to sample. It was the one area that we could really tell she had some dislikes! We have been giving her between 1 and 2 teaspoons of puree in the morning while she eats breakfast. I am working with a feeding therapist at Children's with the goal of increasing her ability to swallow correctly. Unfortunately, just like every other area that we are working on, progress is hard won and slow.

5.27.11

-Aimee is having an Open House!
We'd love to have you join us to
celebrate her wheels!-

Monday morning Aimee and I were able to have a follow up appointment with the wheelchair company and received all but one of the missing pieces. The adjustments with these additional parts have made the chair fit her better. It's nice to see her sitting up so tall and straight. The only thing we are waiting for at this point is a neck piece, which will hopefully come directly to us in the next few weeks.

Monday afternoon we met with Orthopedics and Orthotics departments for a club foot treatment follow up. The doctor is very pleased with the look of her feet and ankles, which is good because we have been so faithful with using the bar every night. Not always the full 12 hours that they have asked for though. She also got a new pair of shoes from Orthotics while we were there.

Wednesday Aimee did really well in her Occupational Therapy appointment. She works so hard with the abilities that she has been given. It is amazing to see, but REALLY testing my patience. She does learn new things, but it takes a very, very, very, very long time of repetitive action. I know that I should be happy that she is making progress, but when it takes a year of work to see slight improvement...it's really discouraging.

Yesterday we met with the Audiology department to get new hearing aid molds made. It takes 2-3 weeks to get them back and the molds she has are already starting to fall out of her ears. Hoping that we will be able to get the hot pink ones again. They looked so cute on her.

Aimee has been on the seizure medications for 4 weeks now. We are still increasing the main medication every 2 weeks, but she hasn't had any major reactions to date. It does seem to be affecting her digestion some, however, the main difference I've noticed is that she has dramatic mood swings. Although, it is hard to know if this is due to the medication or if it is just those cysts in her ovaries acting up again. We'll be meeting with Neurology to discuss how the medications are working at the end of June and to review the results of the brain MRI that she is having that morning.

I contacted Neurodevelopmental last week, because I had been reading through old clinic notes and saw that there was one syndrome in particular that they decided not to do further testing for because Aimee wasn't (or we thought she wasn't) having seizures. I was able to speak with the nurse on Tuesday and we discussed having the test done. It is an expensive Chromosomal sequencing test that takes about 2 months to get results on. Aimee has all of the symptoms of the syndrome (and more), however, her case appears to be much more severe. We have decided to hold off on this testing for a couple of weeks until we meet with the Genetic Neurologist hoping that this doctor will have more insight. When I read about all these difference disorders, it really seems like Aimee either has multiple syndromes or has a very unique situation. So many symptoms to match.

5.17.11

-We love Aimee's new chair!-

5.15.11

Embarrassed to tell you that I cannot post pics today of Aimee in her new chair. I promise I will soon! However, the main point is that she does have it and she loves it! We were able to go in a week ago Friday and meet with the Durable Equipment department to do the final fitting. It took a few hours and we found out we are missing 5 pieces, but they let me walk out the door with it! It is so wonderful. It rides really smoothly and has a great canopy that covers her whole front with a nice window so she can still see out. It also spins around so that she can either face us or face out.
Having it has made us realize that there are some changes that we will have to make soon. We will definitely need to build a ramp up into the house and maybe get cement/concrete for the driveway. Ed is also looking into some kind of a ramp for the back of the tahoe. Although it isn't necessary, because I can lift it by myself, it would make things easier.
Wednesday of last week, Aimee and I spent the day at a conference in Tacoma. The workshop we attended was focused on children with multiple sensory disabilities, specifically hearing and visual impairments. It was really fun and helpful. We did lots of activities with blindfolds and ear plugs in to simulate the disabilities. Several of them we had partners who couldn't speak to us, but had to try to teach us how to do an activity or craft. Amazing insight into how frustrating it would be to have limited sight and hearing!
We were able to spend 4 days last week in Eastern Washington with Ed's family to see his younger brother graduate. It was really neat to get a glimpse of what he has been doing and to get the tour of his labs/projects. Made me miss school though. Anyone want to take a class with me? :)
Aimee and I met with the Speech Therapist on Wednesday after her Occupational Therapy appointment. We had an evaluation done of her current communication abilities and what areas would develop next. It sounds like she will have a Speech Therapy appointment available once a week, although I am considering only having it every other week. Too many appointments! I am excited to get started with this though. Communication is the one area that I am most desperate to see improvement.
Thursday we met with the TVI. She brought over a new, smaller light box that will fit perfectly on the tray of Aimee's chair (as soon as we have the tray). She also brought over a flashlight with different colored lenses and a manual on how to use this type of light therapy. I really enjoy learning about all the different ways I can help Aimee...it is difficult sometimes to fit all the exercises in during her alert hours though.
We are really excited, because this week we are going to have insulation put into the floors of our house! Aimee spends most of her day on the floor (less now that she has the chair) while she plays in her activity room and exercises. It is so SO cold down there and heating up the house with no insulation underneath doesn't really help. We are hoping to be able to sand the floors down and refinish them very soon. Definitely don't want anything to discourage her from exploring her world.

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!