DeVoe Family

8.28.11

This last Monday, Ed and I took Aimee in for her anticipated swallow study. Ed had to come since it is an x-ray procedure and I wasn't allowed to (and didn't want to) stay in the room for it. They basically just get an x-ray video of her eating and see at what point she fatigues, if she aspirates (breathes in fluid/food) and what consistency is appropriate for her abilities. Aimee did really well in the study! She didn't aspirate at all. It only took her 3-4 swallows to get one bite down (compared to 8ish last time). She did still have food pooling in her throat, but she did well with it and was able to clear it.
After the study was over we met with the feeding therapist to come up with a plan for increasing the amount of food she takes by mouth. Over the next two months our goal is to have her eating puree consistency foods 3x a day up to 3 ounces in a sitting (90 mls or just over 1/3 cup). We are very excited to be able to work towards this goal. It will be a challenge though, a good one, but difficult for sure. At this point, Aimee loves to taste yummy things, but definitely does not associate tasting food with satisfying hunger any more (she has been tube fed for 14 months). We are not sure how far this will go, her main nutrition may be g-tube for a long time yet, or it may always be that way. Either way, I don't care, I get to feed my little girl more bites! Now I just need to expand her palate again beyond yogurt and fruit. :)

8.19.11

Wednesday Aimee and I drove down to Puyallup to meet with the therapists at Good Samaritan Children's Therapy. We were to have elbow braces and hand mits made. They had told me over the phone that since I was coming so far they would be able to schedule all the appointments into the same day. Sadly when we got there, they said that we would have to come back at least one more time. Bummer. They took all her measurements and let me pick out colors, which seemed a little silly to drive 2 1/2 hours for honestly!
The splints and mits are for use during therapy exercises. We have been putting her in a simulated crawl position to build up strength in her shoulders, elbows and wrists. She is getting so big now though that, without some supports or multiple people, there is no way do the exercises. Her hand motion is already restricted from lack of use, so I am hoping that by doing more weight bearing exercises we will be able to keep the motion she has. The other option is putting braces on her hands and arms throughout the day. It's hard to know how much she'll use her hands for moving around... is it worth it to put her through more for motions she may never use?

This morning Aimee and I met with the Pulmonary clinic in Seattle for a sleep consultation. We discussed Aimee's breathing patterns and her sleep habits. They were concerned enough to get us a priority sleep study (or Polysomnography :) fun words). Apparently they are booking out in February right now, but were concerned enough about Aimee to get us a study scheduled for 3 weeks out. Should be interesting to see what comes of it. Since she has such low muscle tone, she is in a high risk category for breathing problems. If she is getting poor sleep quality due to lack of oxygen and if we are able to fix the problem, it could even decrease some of the other issues she is having. As they were explaining to me, if your brain and heart don't get to completely recoup then they wear out faster, which can cause seizures, high blood pressure, poor development, ect.

It's all very interesting!

8.12.11

We had our ultrasound for baby DeVoe on Wednesday evening and Aimee officially announced that she has a baby brother! :)

I've attached a short (5 second) video of him flexing his bicep for the camera, as well as, pictures of his cute little feet and profile. They estimated him to weigh 1 pound 2 ounces with a due date in mid December. He is a very active little guy and we are excited to get to know him more!

8.5.11

Aimee has gotten a few new pieces this last week. Yesterday we picked up her new orthotics. They are pink and called 'bunny' shoes. I find medical equipment more fun in cute colors and with cute names. :) The idea behind these shoe inserts is to help her with practicing standing. She will wear them in the stander itself and when we do therapy exercises. They are supposed to give her more stability and some sensory feedback. The only problem is that they are also meant to go inside of shoes, as the bottom of them is really slick...but they don't fit! I will have to do some shopping for a pair of wide shoes for her.

Monday we were also able to get the final piece designed to go with her wheelchair. (FINALLY!) What a mess getting this little piece! They kept having to give me disclaimers and have me sign paperwork about if our insurance wouldn't cover, ect. Funny thing that by the time we were done getting through all that process we had met our stop loss limit on insurance for Aimee...so insurance will be covering it all anyways. This neck support will be used while she is in the chair so that she sit fully upright and be completely supported when we are giving her visual stimulation and working with certain therapies.

One of the therapist that Aimee has been meeting with through the summer is the Speech Therapist. She encouraged us to use a communication button with Aimee when giving her tastes of food or doing an activity. I recorded the word 'more' on the button so that, once Aimee understands the concept, she can tell us she would like to have or do more of something. We started working with it about a month ago. So far she really likes to hit the button, but I don't think she gets that it means anything.

Yesterday Aimee and I met with the school district again and officially committed to starting school in September (EEK!). We are going to try it out for 3 months and see if she is able to adjust to the environment. The good news is that if it doesn't work at all, they will have the teacher and therapists come to our home, at least for this school year. Nice to know there is a back up plan, since Aimee is a bit unpredictable.

Making a little shirt for Aimee to
announce the gender of her little sibling.
Hopefully it will be completed next Wednesday night! :)

7.19.11

So lets see...

Since my last post what has happened...

We met with Neurodevelopmental for her regular check in with Dr Walker. It was...very confusing. This was one of three departments that wanted to see the results from her brain MRI. Neurodevelopmental was primarily looking at the development of her myelin. When we had her first brain MRI at 10 months old, her myelin was only developed to about a 3 month old stage. Now, apparently, her myelin has caught up to over a 2 year old stage in all but one area of her brain. This sounds like amazingly good news and it is good, but it apparently doesn't mean anything. Or at least, they don't know what it means. Clearly she isn't caught up or catching up developmentally, even though she has made slight progress. Dr Walker didn't have any insight into what this meant for her future.

Basically, I walked out of that office completely lost. Although I knew this wasn't the root cause of all problems, I thought it was causing several of the issues that we see in Aimee. Apparently delayed myelination is just another symptom of whatever primary issue she has. Sigh... So I feel like we know less than we ever knew.

The other doctor who wanted to see the MRI was the Genetic Neurologist (the one that had given us life expectancy, ect). I emailed this doctor to see if he had looked at the results and this was the reply I received back:

Aimee's new brain scan shows the same subtle abnormalities as on her 1st
scan, plus subtle atrophy (shrinkage) of brain tissue compared to the 1st
scan. This is quite subtle although I think it is real. This may be related
to her seizures, or might be part of her underlying condition. Hard to know
at this point. The scan does not give new clues regarding the underlying
cause of her condition.

The subtle abnormalities I see on both of her scans include mildly small
convolutions over the front of the brain, mildly small hippocampi, mildly
slow maturation of her white matter, and mildly enlarged ventricles (fluid
spaces in the brain). None of these are very specific.

We have one clinical test underway (testing the gene "CDKL5"). Some
research testing may be possible, and I will discuss this with
the other physicians in my lab.

Although I appreciate his response, it doesn't speak volumes to me. Basically, in my understanding, what he sees doesn't give him much information at all. Don't really like the brain shrinkage part, but I have no idea what it actually means.

We met with Cascade Orthotics last week to have Aimee fitted for special shoes to wear when we do weight bearing therapy exercises. We will be picking them up at a follow up appointment next week. We will also be having her fitted with elbow braces and hand mits for this purpose.

Yesterday I took her in for her first real dentist experience. It was such a great one too. Since this Pediatric Dentist is affiliated with Children's/UW, they had access to all of her records. They knew ahead of time that she gets easily overwhelmed and set up a special side room to see us in that was completely quiet. It was really helpful. She was able to stay in her chair the whole time which also really helped her comfort level. All her teeth were checked and she got her first cleaning. Always such a nice feeling. :)

There are a few exciting things coming up this next month. In 3 weeks we get to have an ultrasound for little Baby DeVoe and hopefully find out gender, ect. In about a month, we get to take Aimee in for another Swallow Study. I'm very excited and hopeful that we will get positive results from this study. How amazing would it be to work towards getting her more food by mouth! I miss feeding my sweetie.

-Aimee's new nightly activity is kicking off her bar. The tricky part is finding all the pieces when she is successful!-

7.3.11

Check out the spotlight just published
in our local phone book about Erin Cox Photography!

Aimee got her first haircut last weekend from her Auntie Jennifer (Ed's sister). I have been wanting to get it cut for about a year now and Jennifer was so kind to come over to cut it for us in our home. I had been nervous to try cutting her hair (hence the delay), but it went really great. I think Jennifer cut off a good 3 inches! It seems to have actually made Aimee's hair curlier!

My Grandma Halo went on to heaven last night. I am so thankful for the amazing memories I have of her and my Grandpa Tom. My dear Grandma taught me how to garden, sew, knit, bake, paint...so many things. Wow! I am blessed by the amazing woman she is and look forward to the day when I get to see her completely renewed as she is in heaven now!

Aimee has had her first 2 speech therapy appointments over the last couple weeks and we will add that to our weekly appointment routine. It is difficult to tell so early how beneficial it will be. So far, the therapist doesn't seem to quite understand Aimee. She has brought over very odd...well things I wouldn't expect Aimee to play with. A few very overwhelming toys that blow air, play music, send balls racing through tubes, ect all at the same time! And then blocks to try to teach her to knock over...hmm... I'm sure she has great ideas and I am trying to be open to her suggestions as she learns more about Aimee.

Monday Aimee had another feeding therapy appointment at the hospital. It went really, really well. They were so pleased with her progress that we may be able to have a new swallow study done. We have to try a few things first to see how Aimee can handle a bit more challenge (increasing her "bite" size to 2 mls at a time from 1 ml and then increasing her daily taste from 12 mls to 24 mls). It has been over a year since her last swallow study and she has definitely improved in the use of her tongue...although she does still choke fairly often. I am hopeful that we will be able to increase the amount of food she can have by mouth. Maybe we'll even be able to increase it to be a portion of her daily nutrition.

Tuesday we took Aimee in for a couple tests. She had a CT scan done to look at the internal structure of her ears and then she had a brain MRI done. It is never fun to have her put under anesthesia. Thankfully the anesthesiologist was really great and gave a her much lower dose than normal and also stopped it before the test ended. She only took about an extra hour to wake up this time! Not bad at all.

After she woke up, we met with the doctor in Neurology to discuss her seizures, part of the brain MRI and her medications. The result of this appointment was an increase in the daily dose of one her medicines. We haven't seen a significant reduction in the number of her seizures, although she has not had any longer than 1-2 minutes recently. We increased the medication on Tuesday and since that time Aimee has been even more emotional, with even more hysterical moods. She gets extremely, over the top excited and then very, very sad. I would definitely qualify it is as a behavior change side effect of this medicine. Bummer.

6.24.11

Wanted to share a few pictures from Aimee's Wheels Party
last Sunday for those of you who were not able to come.
We were so blessed to have friends and family
gather together to celebrate with us!