8.13.13 Sleep Study Results

I spoke with our Pulmonary doctor over the phone this morning following up on Aimee's recent sleep study. She reported as expected that Aimee still has sleep apnea due to her low tone and other conditions. It really wasn't reduced by her recent surgery. Aimee again never even reached the dream/REM sleep cycle as she is continually awakened by the apnea. Add to that how long it takes her to go to sleep typically both at the beginning of the night and between awakenings. Even the doctor commented that Aimee sleeps very poorly. So much so that they were not able to even perform the second part of the study.

Interestingly enough, from a little google search, REM sleep is currently associated with learning, particularly learning physical skills. In fact, infants and toddlers experience much more REM sleep than adults. Never having any REM cycle sleep certainly is not doing her any favors!

At this point we will continue with her BiPap machine on the same pressure levels.

In other news, due to a scary mixup on the morning following her sleep study that caused us to give Aimee double doses of her seizure meds, we have decided to track all of her cares throughout the day. I was excited to find an app that allows me to track everything (temp, fluids, sleep, seizures, moods, symptoms, meds, ect). Aside from avoiding another error like the one we just had, it will also be really helpful to me in prepping for doctors appointments. For example, I want to talk to her neurodevelopmental doctor about her fluctuating temperature. It will be so helpful to have documentation showing the low temps and other factors that might influence them.



 Aimee got a wonderful stand alone hammock this week from her ABM therapist. Since she has outgrown her hand-me-down tumbleform chair, it is wonderful to have another indoor place for her to sit alone besides her wheelchair. Especially on days like this when her chair really must be washed!




Doesn't she look like she is enjoying herself. Even loving to share with her baby brother.

7.29.13 We Don't Always Win

Proof:

We have had a great time this past few days with Uncle Erik and cousin Evan visiting from Texas. While spending a few hours in Seattle, I thought we should bring Aimee to this little tide pool area and help her feel the sea creatures. She gets such a limited amount of sensory input on her own and we are always on the look out for ways to let her be a part. Sometimes, I try a little too hard and it turns out like this.

The first photo is Aimee, happily enjoying the environment while she is secure on daddy's lap.

 

The second.... well something that sounded so nice, like such a good idea in my head, 

turned out unsecure, floppy, and completely counterproductive. 

 And then, poor, scared Aimee slept through the rest of the trip. A sensory attempt gone very wrong!

I am so grateful for her sweet, forgiving spirit. She never holds any attempts against us and takes most everything in stride. In fact, at this moment, she is with daddy at the hospital having another sleep study done. Below is the photo Ed sent me this evening as she was getting wired up for the study. Precious girl. It takes a lot to turn her smile upside down!

7.15.13 To Catch A 'Zzz'

I kind of wish this post was a how-to guide on getting more sleep with a newborn or, even more so, a manual on resting as the parent of a disabled child. It is, in actuality, neither of these things, but I am still excited to share some of the possibilities for catching Aimee a 'Zzz' or two.

We are currently in hot pursuit of safer, more consistent, fuller nights of sleep for Aimee. Between her more frequent sobbing sessions, her reflux, her lack of visual abilities (causing her to confuse night and day), her seizures, and her apnea/shallow breathing, Aimee gets much less than an ideal night sleep and does her best to make up for it during the day. We won't ever be able to resolve all the reasons, but we are hopeful that a few of her nighttime battles can be subdued.

On Friday we met with the Childen's Hospital Durable Medical Equipment specialist in regards to ordering a bed. She recommended some nicer looking versions of hospital beds with nice hefty looking price tags. We told her about the comfy lift bed that we had already looked into and she agreed it would actually resolve more issues for about a tenth the cost. You may remember me sharing a photo of this bed before. It will allow us to keep Aimee quite elevated without having to strap her down (as they actually do when she is at the hospital). It can be used on top of her current bed or even directly on the floor for when she needs to stay in our room during sickness. We are hoping that it will provide a great solution towards longer periods of better sleep for Aimee. The therapist estimated that it would be sufficient for the next 7 years, at which point we may be in need of a lift machine in order to move her.

Another element we are considering adding is a video system for night monitoring. We feel really limited in our knowledge of how Aimee is doing from across the house with the simple baby monitor we have had since she was born. It is nearly impossible to hear the quality of her breathing, to tell if she is just coughing or actually choking, to hear if her mask is leaking, and there is no way to see if she is seizing or even just awake. I find myself making several trips to just check in on her. A video feed won't resolve all these issues, but it may help with a few.

Also, in two weeks, Aimee is having another sleep study done to reassess her apnea severity and potentially adjust the pressure of her bipap machine. We are hopeful that her recent surgery will mean positive results in this area at least. The nights that she sleeps well and keeps her mask on overnight, we are nearly guaranteed a happy, energetic Aimee the following day. How lovely it would be to see this happen more frequently!

All in all, we have great hope that these simple changes may mean longer awake day periods full of energy and joy for Aimee. Here is to a night full of 'Zzz's!

6.24.13 Our Frog Prince

Thursday, June 20th, we welcomed a new little boy to our family. Elliot Anthony took his first breath of air at 4:51pm.

While I was preparing for his arrival around 3pm, I decided to try brightening up the bedroom. My birthday roses (from 2 1/2 weeks prior) were looking quite sad on the side table and I thought I might be able to find one or two off of our bush out front.

What a stormy day we were having! Most of the roses were pitifully drooped from the rain. I found one pretty little bud and one half open bloom. Upon cutting the bloom though, I noticed there was a leaf that had fallen inside. I was about to pull it out when I saw the leaf's throat moving. Its eyes were looking directly at me. It was in fact a tiny little frog nestled between the petals.

What a surprise. I felt like I had been transplanted to a fairytale. As I was about to welcome a new baby into the world, a special little present was just outside my door. My little frog prince was about to venture out from his cozy, petaled home into the stormy world. Elliot's adventure in life has begun!

6.15.13 Mixed Results

Aimee's surgery follow up was earlier this week. Pleasantly, unexpectedly, we have found that the strength of her cough has increased since surgery. Although this did not reduce the time of her most recent sickness (still right about 2 weeks), she did not battle dehydration nearly as much as she typically would and she did not lose very much weight. Also, since surgery, she has been able to breath through her nose and it was able to run during sickness. All really great.

However, the main reason we did the adenoid removal and turbinate reduction was to allow her tear ducts to open. At this point, we still can't tell if this has happened. It doesn't seem like it. The doctor said that it could just be that she is showing signs of allergies due to her nasal passage being suddenly bombarded with so many invaders that is has never dealt with in the past. This should resolve itself as her immune system calms. Then if she still has this much tearing/eye infections, we'll head back to the drawing board.

In other news, I am bummed to report that my attempts to wean Aimee off of her reflux medication by replacing with apple cider vinegar and pure aloe seem to be failing. We are only on week two of my reduction schedule, which means at this point we have decreased by 1ml. She has been having a significant increase in reflux this past 48 hours. I wish I had the experience to know if our supplement doses are appropriate or if there are better options. This reflux med is the one that is rumored to block nutrient absorption. It is also practically a challenge as it is compounded and thus has to be refrigerated. I wonder how that will work with our next trip to the therapy center.

On the exciting end of the news spectrum, I finally figured out how to change Aimee's diaper in her chair. This is a huge deal for me as I have been running into difficulty finding a safe, modest way to change her on days away from home. The floor of the van was my go to spot, but with the big pregnant belly it is nearly impossible to get her in and out of her chair in a cramped space. I can only imagine, as Aimee grows, we will need to invent new solutions to this challenge.

We are two days away from the estimated arrival of Aimee's little brother Elliot. Remembering how much she enjoyed Caleb as a small, crying infant and knowing how much she loves him now, makes me excited on her behalf. She will soon have two brothers to entertain her with their funny sounds!

5.30.13

After my glowing report yesterday, Aimee woke up sick this morning. Just congestion and sleepiness currently, but we will plan to lie low until she is well. I am so thankful for this past couple of months of health. She is in much better shape to fight sickness now than before.

5.29.13 Venturing Out

As the weather has warmed up and the amount of sicknesses floating around has decreased, we have slowly begun to bring Aimee back out into society wearing a mask to provide extra protection. She has been able to go to school 3 days so far, been to church several times, and even gotten to visit a few friends. In fact, this Saturday we are excited to take Aimee on her birthday outing to the Pacific Science Center. Only 3 months after her birthday. :)


A few updates from this past month:

-Aimee has recovered completely from her surgery, although we technically have a few weeks left before we will know the full affects. As of today, it doesn't seem to have resolved her tear duct issue, but we'll wait to judge.

-We met with Pulmonary clinic this past week and they do want another sleep study done. They are hoping that her nasal passage being more open will allow the pressures on her night time BiPap machine to be lowered. She also got a sparkling clean new mask to wear. Unfortunately, she has a rash from wearing the new one the last few nights. I am wondering if it was washed in some type of chemical before coming to us.

-We were able to have a few ABM lessons over the past couple weeks too. Her response to this therapy is wonderful to see. She has been working on participating in sitting up. When going to the left, she is doing really amazing. She pulls her head forward, keeps her arm down, and even showed a tiny bit of pushing against her arm the last time. She has a really hard time participating toward the right. She has a harder time mapping that side out in her brain it seems, so in general she is less active on that side.

-We are preparing our family and our home for the arrival of Aimee's little brother Elliot, who we expect in about three weeks. Please pray for a peaceful delivery and for our family as we transition to three babies.