11.14.13 Housekeeping

Don't worry, this post is not about keeping your house clean. I have little input to offer you in that department. In fact, it is entirely overrated. Except that it is actually wonderful and I miss it. 

Anyways, our appointments yesterday were somewhat like housekeeping. First we met with Aimee's Neurodevelopmental doctor. He takes any and all types of questions and concerns. He throws some out and answers others. It is good to have a place where we can ask about the little things. For example, who do you talk to about temperature regulation? Or panic attacks? Or prescription diapers? 

A few new things came of it:
-testing out melatonin to help Aimee sleep
-attempting to get a floor chair so Aimee can be down interacting with her brothers safely
-trying out prescription diapers as Aimee is outgrowing the size 7 pampers
-agreement to potentially remove Aimee from school
-affirmation to bring her bring her to ER as soon as we are concerned. Even said he will back us at any time they don't check her out to our satisfaction. 
-guidance on getting respite hours

Overall, he was really pleased with how great Aimee looks, complimenting her diet and coloring. She even laughed for him during the check up. Sweet girl!

The second appointment was with a respiratory therapist. She spent a couple hours training me on chest PT and testing out a cough assist machine. We came home with clappers to start practicing for her next sickness. The cough machine is quite expensive, so we will rent for a period to test. It is kind of like an intense version of the bipap, except instead of a constant variable pressure the machine fills the lungs and then pulls the air back out. So often Ed and I wish we could cough for her. I am really hoping these tools will make things easier and more comfortable for Aimee when she is sick. I'll let you know!

11.11.13 The Wonderful Glimmer of Hope

Friday was Aimee's 4th BAER exam. Although there had not yet been any change to her hearing, we continue to have this test done to first ensure that her hearing aids are programmed correctly and second as a test of her nervous system. Aimee is mildly to moderately hearing impaired due to her nervous system challenges, specifically the auditory nerve. This test is similar to an EKG or EEG in that it tests electrical responses in the body.

This is me, all gowned up, preparing to carry Aimee and Tilly Bear back with the anesthesia team:

The test takes about 2 hours, so Caleb had lots of time to visit the fish:

Elliot played happily:

After the test was over, we were thankful to pull out the electronics in the recovery room to entertain tired parents and napless Caleb. The boys were so good all day!

While we waited for Aimee to wake up, we discussed the test results with the Audiologist. Happy surprise: Aimee's hearing showed some improvement in the lower tones! It is such wonderful news because it means that there has been progress in the nerve connections in her brain. Considering we have been told that Aimee will not make any more progress going forward, this news gives us great joy. 

Yesterday, we were able to spend some time with my amazing sister-in-law and her kids. My sweet nephew has a very tender heart for Aimee and frequently asks lots of questions about her. I am always encouraged by his hopefulness and prayers that Aimee will be "normal" some day. What a pleasure to see a glimmer of this prayer fulfilled!

PS. I applied for Aimee to be matched with a runner through WhoIRun4.com. I encourage you to check it out if you are a runner yourself or if you know a special champion who cannot run for themself. More details soon!

11.7.13 PASS

Aimee was cleared yesterday by the PASS (pre-anesthesia) and ENT clinics to have her sedated BAER (Brainstem Auditory Evoked Response) exam on Friday. Thankfully she recovered over the weekend from her sickness and was symptom free by Monday. We have kept her home from school and away from the public (aside from the hospital) this week in pseudo isolation to keep her healthy for Friday. What a relief to have her well again!

Since she has been sick so much this past year (save the summer break), we have figured out some of the patterns she follows. Her typical length of sickness is 11 days, assuming no secondary effects. Not just on average, but specifically 11 days the vast majority of the time. Since our world stops as we focus energy completely and constantly on Aimee during these times, it is helpful to know when the end is likely in sight.

Her brothers enjoy having her healthy too! Here is Caleb playing the iPad with Aimee:
And Elliot chewing on her fingers:

11.3.13 Dear Aimee

Dear, sweetest Aimee,

There is so much I have to tell you. I even have some to teach, like how to braid a dolly's hair, to love little brothers, or make special treats for daddy. I'd like to someday teach you to make hollandaise or how to write a poem. I'd like to color pictures together and wow as you surpass me. I'd like to hear the things you know and laugh with you over a cup of tea. I'd like to tell you how pretty your hair is and how you will always look beautiful without a dot of makeup. 

Today, what I wish I could say is how I really hate this disease, this disorder that robs us. I hate not knowing what you feel, think, or even what you know. I hate going to bed at night pondering you like some broken down machinery. I hate not knowing what hurts so I can pray that it gets better.

Today, I want to tell you how I love you so... but not the way I want to love you. I want to know what you love. I want to buy you a special toy that your heart so desires. I want to hear what you want to be when you grow up. I want to listen to you sing and know if your voice cracks and is off key. I want to see you twirl and dance with you to your favorite song (Or even to Move It, as Caleb calls his favorite song).

And yet, this ugliness crept in and trapped you. And I don't get to know you. I don't get to and I hate that with a deep, painful hate. It makes my chest tight and my eyes swell when I think of how little I know about who you really are.

Aimee, when we get to heaven, I want to sit with you and talk. We can hold hands like we do now. We can cuddle together like we do. Or we can run, twirl, and sing together. We could talk about how you felt about going to see doctors, about how the medicines changed things, about how I embarrassed you writing about your intimate life on a blog. I could apologize for the things I didn't know. I could smile at the times you enjoyed. And then we could get up and do the things we never got to do. You could taste the cookie dough, make a mess with the frosting, help Caleb and I make veggie juice. 

Someday, when all is whole, when these tears are dried, and sickness has been annihilated for good, I'll look into your eyes and tell you how much I love you. And you will know it fully.

Always,

Mommy

10.28.13 New Keys

In the midst of the current sickness, we have discovered two keys to comfort.

First, we found a way to make her so much more comfortable. She has to be in her chair 24/7 when she is sick. It never occurred to us before that she could be snuggled in with a few adjustments on her side. How did this never occur to me before?!

The second key is really more about my own peace of mind. We bought a monitor to track her oxygen saturation, heart rate, and blood pressure. Now we don't have to take her in just to ensure that her oxygen levels are high enough. One less stress point!

10.23.13 Absence Seizures

Yesterday we met with Aimee's neurologist. We left the appointment with very mixed feelings. On the positive side, I came prepared to argue for trying out the ketogenic diet to control seizures and   eventually phase out some meds. Without much argument, the doctor agreed that Aimee could be a good candidate, but informed us that there is currently no room for new patients in the program. Disappointing. However, as I was concerned about Aimee's mood changes, he allowed us to decrease her dose on the least essential med. Assuming that she stays stable, we could even consider reducing it further. Very encouraging. 

While we were there, he reviewed with us the original EEG results and we discussed what her known seizures look like to us. He said that the test had shown spikes every 3/4 of a second all over her brain, but most often in the front. The results showed her at risk for multiple types of seizures, especially absence seizures. He brought it back up to us because while he was examining her, he felt that she had an absence seizure. Bad news. 

From here we need to track these episodes and when we return in a few months we will decide if an inpatient test is needed. The episode that he thought was a seizure looked like Aimee spacing out, which she definitely does do frequently. I couldn't say how often... I always assumed it was boredom or just a side effect of her overall condition. We are trying to process how we can even keep track of these types of seizures to know what the patterns look like and at what frequency they occur.

Unfortunately, in the midst of these conversations, it appears that Aimee has picked up another bug! This afternoon she has gradually shown more symptoms. Her breathing has become more congested and labored. Yet again our focus shifts to the basics.

10.21.13 Doggie Paddle

It seems that I have forgotten how to swim. 

I've never been the best swimmer, but darn it, I could make it across the pool and back with out any floatation devices. Last month, while Aimee was sick, I was grasping for the side of the pool or for the arm of a swimmer passing by in the neighboring lane. I felt ragged. Thin. My arms are still trembling and my legs are weak as I attempt to float on my own. It probably isn't pretty. Some moments I am impatient, unproductive. But, I'm paddling and the pool hasn't bested me yet. 

This smile keeps me paddling:


Aimee was officially cleared at the beginning of this month, although her doctor (and even some of her family) are concerned about her beginning school. Last year, she rarely was able to attend due to illness. This year, she has already missed several weeks. We have done our best to keep her well, but I do wonder if there is more we can do. I value her doctors' abilities to deal with sickness as it arises, however, the only suggestions they have offered for preventing illness are washing hands, steroids, and keeping her home. We have added nutritional changes and some supplements, but are open to more ideas.

For this reason and several others, I would like to consult a homeopathic doctor. Anyone have a recommended one in our area? I am hoping to solve the sleep dilemma, which I am quite certain contributes to her difficulty kicking common colds. I am also hoping to have help finding replacements for some of her medications that may be contributing to both issues.

This summer we again pursued getting Aimee covered by disability insurance and again were denied. However, at the recommendation of a friend, we applied for children's state health insurance provided on basis of financial need and all three of our kids were approved. We are trying to figure out what this means for Aimee, but are very hopeful that equipment costs will be covered (it is time to replace some equipment, fix broken pieces on her chair, and get her bed) and maybe even monthly medical expenses will be reduced (min $960/month). Praying that we would continue to have peace in God's faithfulness to provide. 

9.27.13 Normal

Tonight, for the first time in oh so long, I looked at Aimee and saw her there. She start talking again this evening and engaging as she normally does. Her symptoms are almost completely gone. Her temperatures have normalized to her typical levels. And she is back to her emotional self. We trade all nighters full of coughing and choking for late night sob sessions, which is absolutely wonderful. Not because I want to see her cry, but because this is her normal and because holding my healthy girl brings joy to my heart. She is communicating with me again and even in the abundance of tears that wet her cheeks, I am so thankful. Here is to health! 

We have a few follow ups this week to officially ensure that her infections are cleared, but I believe I can finally say, after a full month of sickness, Aimee is well! And colds, flus, viruses, and infections, keep your distance! You are unwelcome guests.

9.16.13 Answers

Aimee is definitely improving. They for sure identified an infection in her urinary tract and are also treating her for pneumonia. She has perked up significantly and the antibiotics are doing their thing. 

Yesterday this musician came and played his bassoon right outside our door. Really, really cool!

Also, Aimee and I got to cuddle up together during the thunder storm and cheer on the Seahawks. A special treat to get so much time with my girlie, although I miss all my handsomes!


9.14.13 At Children's

Quick Update:

We spent several hours in Urgent Care this afternoon and were finally transferred to emergency at children's. After blood cultures, x-rays, catheters, ect, it looks like she has a pneumonia and they
want to keep her here while they wait on her blood cultures to come back to see if the pneumonia has spread bacteria into her blood stream. Her blood pressure is low, her white blood cell count is low, although her temperature has been in the 96s. 

Ed and Elliot headed home to get some rest. Not the place we would have chosen for a girls' night sleepover, but I am glad to be with my sweetie.

9.13.13 Perplexing Patterns

Confused and worn down me cannot process this past 18 days. Several ups and too many downs later, Aimee is still sick. This is simply not normal. I am afraid that our life is warping around it and these coming months will shift our patterns of interaction with the world outside our door. Perhaps I will have to let go completely of attempting to keep up with the typical world.

Aside from the perplexing pattern of sickness, another oddity that has us confused is Aimee's temperature. We have been diligently tracking throughout this last month. While nearly always low, her temperature graph shows it ping pong around throughout the day. In Washington, we have had, and are still having, a lovely summer. It has been consistently sunny and warm. Our house has been, on average, 76 degrees during the afternoon/evening and 71 by the morning. Quite often through the afternoon we would get body temperature readings in the 95-97 degree range. By first thing in the morning and through most of this sickness, her temperature is in the 93-95 range. Occasionally, her temperature flies up into a mild fever. Yet, I have not seen any shivering or sweating on either end throughout.

This is a picture of Aimee the other day. 80 degrees in the house and sick Aimee was bundled up in layers of fleece clothing and blankets to keep her temperature up.

This has me throwing random ideas around. Is she not getting enough fats, does she require movement to keep up her temperature, is it typical for low toned kids? Is her nervous system's inefficient communication affecting her body temperature? And how in the world can I regulate it? Sometimes it changes 3-4 degrees without any external adjustments at all. Perhaps, after we all recover and get some sleep, my brain will be able to better sort it out. 

Ps. Thank you to my generous parents who came over Monday and gave me an opportunity to take a nap, read a book, and even provided dinner. What a refreshment! Thank you to Kathy for coming this afternoon so that I can get groceries. Thank you to Shari for always supporting us. And thank you to each of you who in different ways are gracious towards us, listen to our challenges, befriend us from afar, and remember us in your prayers. We are grateful for such a wonderful crowd of friends and family. 

9.6.13 Update

Thank you for praying for us this last couple weeks. Aimee is still sick, although improving a tiny bit everyday. We have had some scary moments and definitely need to get an O2 monitor before the next sickness hits. Ed was able to be home today, which meant I got to reacquaint myself with my bed and he took my place during the night monitoring Aimee in the living room. (Thank you Ed!) The kids and I survived (barely it seemed) our first 2 weeks of an Aimee sickness on our own, with some much needed help from Curious George.  Long nights awake with Aimee choking and long days with a snotty nosed helper and a chubby infant. Three is a big number when Aimee is sick and sleep is scarce! Really hoping to see big improvements before Monday morning rolls back around.

We did have to cancel Aimee's sedated exam and all appointments this week. I had pushed it back to this month so that we could have a break after the baby arrived. Honestly, I was also really hoping the sick season was a ways out. Wish we could protect her from it without locking down in our house. We will try for this exam again in the coming months.

8.27.13 Prayer Request

Prayers appreciated. Aimee seems to have picked up a bug this last weekend. This will be my first time on my own with a sick Aimee and my two boys. I'm nervous. Much grace needed for me and patience for them. Also, she is scheduled for a sedated hearing exam next Friday. Praying that what she has picked runs a mild and quick course so that she will recover in time for her exam.

8.25.13 Evening View

Ed set up a video feed of Aimee's room this evening. We can now have a more restful night on the peaceful nights, keeping our eye on her without wandering across the house throughout the night. The quality is high enough that I can see her eyes blinking, can tell if she is choking, and, of course, know if she is asleep or having a seizure. 

So, here I am watching this cute little girl while she plays in bed. This just so happens to be one of her happy nights (thank you to today's chiropractic adjustment!). Amazed and blessed by technology. Now, go to sleep Aimee! :)

8.19.13 Sobs and Seizures

Tonight is a night of many sobs and a few seizures. A night of distress. A night of frustration as I have no idea how to help Aimee. I am holding her wrapped in a soft blanket rocking back and forth in Ed's recliner. A few days ago I tried laying with her in her bed to stop the sobs. I have brought her into my bed nights before that. Too many sad nights for my pretty girl.

Tonight, I wonder as we rock what makes her so sad. Is she scared because of the seizures? Is she having stomach cramps and acid reflux because I gave her formula for breakfast and lunch instead of blended food? Is she in pain? Is she feeling alone? Is she just overly tired from lack of sleep?

I don't know. I'll just keep rocking and rocking her until she wears herself out. Selfishly wishing I could take my much needed shower I had planned for tonight. Knowing at this point, I'll have to put off cleanliness again to tomorrow evening's list. Most of all praying for peace and wholeness for my honey bird in night's dark hours.

8.17.13 Love

The language of love speaks so clear that even the deaf can hear its song.

The sight of love is so bright that even the blind can see its outline.

The movement of love is so graceful that even the lame can dance to its beat.

The wealth of love is so extensive that even the penniless can draw funds.

The presence of love is so real it brings hope to every anxious heart.


This girl knows love

There is no language I would rather she speak.
No sound I would rather her hear or sight her see.
There is nothing else better for her to know than the heart of love.
And so it is with you and me.

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.

4.27.13 Yippee!

Aimee woke up at about 2:30 this morning like she was coming out of a long trance. The past several days if she opened her eyes, she wasn't really present. Suddenly she was making normal Aimee sounds, kicking her legs, looking around, and grinding her teeth! And she has been at it ever since. Love it!

She isn't quite herself yet, still a junky cough from drainage and some difficulty with getting full calories, but this is a huge, giant improvement. She has been spending nights in her chair right next to my side of the bed. Worked really well cause we could hear if her breathing was regular easily, adjust the angle she was reclined, hold her hand, keep her liquids running, suction her, ect. Not conducive to rest, except that we were able to lay in our own bed. All worth it, but seriously hoping today is the day I can get in a shower and perhaps even a nap!

Thank you for all the love this week!

4.25.13 Update

The good news:

Odd as it sounds, one exciting thing that happened today was Aimee's nose ran for the first time... EVER. Also, she has been breathing partly through her nose today! Success in that area already!

The meh news:

She is having a really hard time with drainage from the surgery site down her throat. Coughing and constantly chocking on it when she is awake.

Her temperature has been fluctuating between a low fever and a low body temperature. I don't know what to make of that.

She has been sleeping a lot today, which is great. She needs it! But, when she is awake, she is uncomfortable and moaning continually. Not sure if it is pain or if she is confused by the sensation/ability to breath through her nose.

Praying for a restful night with less choking tonight. We all need it!

4.24.13 Post Surgery

Daddy carrying Aimee back to surgery.
What a long week yesterday! Oh wait, I mean day. Going into yesterday's surgery, we were already pretty sleep deprived. Aimee has not been sleeping well lately. She commonly gets her days and nights confused and will stay up playing and talking throughout the night. Lately though, she has been crying and crying all night long. Not every night, but more and more frequently. Wish we knew why. She does better if we hold her, which is amazing! I am stunned and blessed that her cries gradually become less intense when she is in my arms. Makes my heart glad.

Thrilled as we are to hold her and to try to get some sleep with her, it meant going into yesterday in a less than ideal condition. Aimee was energetic though. :)

Tilly bear had his own bracelet.
The surgery itself went really well. It only took about 45 minutes in the morning and then we spent the rest of the day waiting for her to wake up, which we anticipated. We did not expect that she would have difficulty with and spend into the evening on oxygen. We finally decided that we would spend the night at the hospital. Although we typically avoid this in every way, we couldn't take her off of oxygen.

Sleeping in the recovery room on oxygen.
Her nurses in recovery were not very experienced with transferring a patient to a regular room while on oxygen and monitors. It took a couple hours to get everything ready. Finally we got Aimee transferred into a beautiful room full of sunlight in a nice quiet corner. Almost immediately, it seemed, she started to perk up. Her respirations stabilized and we were able to turn off her oxygen while maintaining fairly decent levels of saturation.

Perking up in her sunlit room.
So, we said that we wanted to go home. :) Although keeping her on monitors overnight would have been good, we wanted to care for her ourselves and help her get a good rest if possible. At least better than she would get being constantly checked, beeped at, prodded, ect.

We kept a close eye on her through the night. It was a long night, but we were at least at home. She definitely is still having some difficulty with her breathing. We are fairly certain the main cause is drainage from the surgery site. She is gagging on it constantly and thus we are limited in fluids and food intake. The doctor said it will take 8 weeks to completely heal and not to evaluate results until after that point. The good news is, she doesn't seem to be having a lot of pain from the surgery itself.

It may be a long rest of the week, but we are happy to fight that battle from our own living room. Thank you to everyone who prayed, texted, called, and facebooked us. We so value all of the prayers and love for Aimee.

Please pray for:
-the drainage to slow so that we can increase fluid intake for hydration and calories
-continued low pain
-rest! For Aimee and for me! Okay, and for Ed too. :)

4.22.13

Check in for Aimee's nasal surgery is tomorrow at 8:25am. Prayers for protection under anesthesia, normal wake up, no prolonged seizures, and smooth recovery appreciated. Nervous momma right here.

4.10.13 The Unsought Gift

No one requests this gift.
No one day dreams of their baby being disabled.
No one asks for the reward of limitations.

I was lent a book recently by Aimee's vision teacher called 'Adam: God's Beloved' by Henri J. M. Nouwen. Her teacher said that reading it reminded her so much of Aimee and how she has always seen her as such a pure angel.

The book is by a Catholic priest who spent much of his life writing and teaching on spirituality. In his late years, he pastored a community of handicapped individuals and spent 14 months participating in the care if a disabled man named Adam. The experience changed his view of himself and his view of God. Although Adam could not speak, walk independently, and suffered from seizures, he became a mentor to this wise man. Although many would only see the many needs and thus the burden of caring for Adam, the author began to see the sacredness of the person. He writes:

"Adam was sent to bring Good News to the world. It was his mission, as it was the mission of Jesus. Adam was -- very simply, quietly, and uniquely -- there! He was a person, who by his very life announced the marvelous mystery of our God: I am precious, beloved, whole, and born of God. Adam bore silent witness to this mystery, which has nothing to do with whether or not he could speak, walk, or express himself, whether or not he made money, had a job, was fashionable, famous, married or single. It had to do with his being. He was and is a beloved child of God. It is the same news that Jesus came to announce, and it is the news that all those who are poor keep proclaiming in and through their very weakness. Life is a gift. Each one of us is unique, known by name, and loved by the One who fashioned us. Unfortunately, there is a very loud, consistent, and powerful message coming to us from our world that leads us to believe that we must prove our belovedness by how we look, by what we have, and by what we can accomplish. We become preoccupied with 'making it' in this life, and we are very slow to grasp the liberating truth of our origins and our finality. We need to hear the message announced and see the message embodied, over and over again. Only then do we find the courage to claim it and to live from it."

Truthfully, I cried about 12 times while reading this book the other day. Partly, because of Adam's passing at the end of the book. I may have squeezed Aimee a little tighter and cried over her. I also cried, because of the beauty of being lovable when one is completely empty. The message that is lived out by those who have nothing tangible to offer the world and instead seem to be a burden only.

We live full lives. We measure our successes and feel confidence or happiness based upon our abilities. Though we may not consciously think it, we commonly value ourselves based on what we can do. We don't even know ourselves beyond the deeds and items that surround us. We are known for these things. We are afraid of our weak areas and ashamed when we cannot do what we see others able to do. We may honestly look at ourselves and see nothing worth loving after we are stripped bare of our good deeds, our talents, and our strengths. Some may see a severely disabled person in the same way. What is there to do but take care of them? They are automatically empty where we are full of any activity we can conjure up.

It is in this emptiness that the truth lies. We are all broken, whether visibly disabled or invisibly faulted. The truth of divine love reaches past ability, beyond our pursuits, to our true value. You are valuable and precious. Not because of your talents. Not because of your wise decisions. Not because of your selflessness.

I am proud of my daughter. Not because she learned faster, got better grades, talked earlier, always obeyed, never lied. I am proud of HER. And this same way, you are beloved. Always you are loved, beloved of God, as Aimee is loved. Just as you are, just as a person with visible or invisible disabilities. In Aimee's brokenness and inability, she is whole. When we are able to let go, empty ourselves of all these pursuits, we too can be made full. Even when we have nothing to show for ourselves, we are beloved. Not in spite of our weakness, not because of our strengths. Simply, we are made uniquely, creatively, wholly His own.

This is the message, the gift that Aimee's very being communicates from the heart of God. The gift of being in relationship with an individual who is completely reliant on others for care is the peace, the confidence in knowing you are valuable. We can freely receive this gift of seeing what we would be when completely emptied of everything we could bring to the table, of seeing that we would still be loved. In this way, the disabled person, who seems broken and empty from our perspective, is actually whole. The gift that they give us is healing and completeness beyond our abilities.

By accepting this message, we are accepting the unsought gift. No, this is not the gift I asked for or wanted. I never wanted to have a child who could not have accomplishments or do good deeds. I don't want to look into Aimee's eyes and wonder how long I get to be her mom. Yet, what I most want for my children, Aimee has. She knows she is loved and she shares her message freely. It is the priceless gift I have been given, the gift Aimee has been entrusted, and the gift that I can share with you. I will be always thankful for the unsought gift Aimee brings in her immense weakness and in her astounding strength of spirit.

4.6.13 The Corner Of My Eye

One of Aimee's favorite places to be right now is in her play room on an old crib mattress. When she kicks her feet she gets a nice feedback bounce from the mattress. Plus, there some great objects in that play room, though the jingle bells are the winner for sure.

Yesterday, I climbed in her playroom with her for a bit and Aimee thought this was hysterical. She has a tendency to laugh when a routine is done differently than she is used to it being done. This shows up a lot when she is with an alternate caregiver, like at school, where the nurse might pick her up out of her chair differently than we do it at home. We are excited to be noticing this increase in awareness of differences more and more lately. How incredible it is for her to acknowledge my presence in her play space!

Another way she has become more aware is visually. When we do vision therapy with her it is in controlled environments that optimize her ability. Typically, this is a very dark space with no windows for conflicting light. We then use a light box to illuminate high contrast, moving patterns and objects. However, just lately, she has been noticing us with brief glances out of the corner of her eye, where she sees best. We are seeing this corner of the eye phenomenon occur when we hold her/lay next to her outside of the controlled environment. She still uses the sound of voice and maybe even smell of individuals to primarily identify them, but using her vision in this small way is a wonderful venture forward into new territory. Hooray Aimee!

Prayer request:
Please pray for Aimee to be protected from sickness. We were hoping to venture out tomorrow, taking her to church wearing a mask, for the first time in a few months. Unfortunately, Caleb has gotten a cough and fever for the first time in his little life this week. I am doing my best to protect Aimee, but it is hard to keep a sweet boy from his sissy when he continually tries to snuggle with her.

4.3.13 Turbinate Reduction

We met with Otolaryngology yesterday. After two unsuccessful attempts at correcting Aimee's chronic eye infections and blocked tear ducts with Opthalmology (tear duct probe and stint procedure and topical steroid spray), we were referred to meet with Otolaryngology to discuss option C. After reviewing Aimee's situation the doctor felt that it would be best to proceed with doing a turbinate reduction in her nasal passages, steriod injection, and most likely do an adenoidectomy at the same time. The turbinates help to moisten and warm the air that you breath. They are often reduced in allergy patients due to swelling. In Aimee's case, it seems that her nasal passage has become increasingly narrow as she has grown. Her adenoids were only somewhat enlarged when her last x-ray was done by Pulmonary 18 months ago, but the doctor thought that they had most likely increased in size and are a contributing factor to her issues.

The hope is that by reducing the size of the surrounding tissue pressure will be relieved on the tear ducts where they enter the nose. Opening up her nasal passage may also help relieve some of her difficulty with sleep apnea (not all most likely since she will still have hypoventilation due to her low tone) and allow her to breath through her nose (mostly obstructed). May even reduce ear infections. Although we only know she has an ear infection when the drum ruptures and bleeds, so we are only for sure that she has had two.

All in all, the doctor feels that the procedure will benefit Aimee, although he did stress that it may not relieve her continual eye infections. I am very hopeful that it will, because option D involves restructuring her tear ducts and potentially adjusting facial structure. As always, going under anesthesia is a bit nerve wracking, but at least we know the drill! As long as she stays well, she is scheduled with the surgery center for the 23rd.

3.29.13 Possibilities

We had a special opportunity this week to have lessons with a therapist who traveled up from California, where the ABM therapy center is located. Since we weren't sure if we would be making it back down to the center before the baby comes, we were excited. The lessons were AMAZING! Our regular therapist was there video taping the lessons and learning more ideas for going forward with Aimee. The visiting therapist was an incredible resource. She had previously been a traditional physical therapist and is able to take benefit from both types of therapy in her recommendations.

Aimee responded immediately to the new positions and techniques. It was really fun to see her engaged. She was so excited between the lessons and "talking" a lot. A few new things we have seen her do during the week:
-Rocking pelvis front-to-back (she had started wiggling it side-to-side a few months ago)
-Wiggling her rib cage side-to-side
-Moving her head, left leg, and wiggling her hips all at the same time
-More handsy (grasping at hands, tubes, hair, really anything that touches her hands at all)
-Participating in rolling toward the right side during therapy by pulling her head forward
-Able to hold her knees closer to in line with her hips, rather than only holding them out
-Improved ability to move her right leg and plant her right foot
-Also, fun loving girl, laughing every time they show her how to move her pelvis

The most exciting thing that happened during the sessions (to me) was watching her participate in the sitting up process. She looked so cute and it was so heart melting to see how much she wanted to participate that I really hoped to get a video so that I could show you. Unfortunately, by the time I thought to get out my camera, Aimee was really tired. I will get a clip from our therapist who was videoing the whole thing and post it as soon as I can. I think you will really enjoy seeing how the therapy works. It's really stunning.

The visiting therapist was most immediately concerned with helping Aimee straighten out her spine. She is always contracted towards the left with her right side extended. This has caused, among other things, worsening of her scoliosis, difficulty in turning her head toward the right and in orienting herself to things happening to her right, her jaw to pull toward the left, and changes in the shape of her face and skull. The great news is that this therapist has successfully helped kids improve in this area.

She also really encouraged us by saying she can see Aimee learning to push with her feet. Aimee has always loved to kick and with her lessons she may be able to learn to first push herself away from a wall and eventually to move across the floor on her back by pushing with her feet. Exciting possibilities for Aimee to have an independent movement. She LOVES to move.

This morning we got an email from the center down in California letting us know that there are lessons available for Aimee starting one month from today with the founder of this therapy method. We will be praying about it this weekend. We don't have the funds to go and it is only 6 weeks before the baby is due to arrive. On the other hand, we know God can provide the money and it may be easier to travel when the baby is still en route than it will be for the first several months after he comes. Please pray for us to have wisdom.

3.26.13 The Fear of Motherhood

Aimee playing with Caleb before he was born.
Fear and motherhood invoke such separate pictures to the mind. Yet fear, sneaky and vile, creeps into many beautiful parts of life. In fact, I imagine many mothers, well for that matter many parents, at some point face fear in parenting.

Multiple doctors, multiple times have said that it wasn't our fault. Several have specifically said there was nothing we did or didn't do that caused Aimee to be disabled. Most are convinced that Aimee has a genetic condition, more than likely even a genetic mutation. Meaning that the beginning of her story had no influence on her current condition.

We knew we wanted other kids, but we also had an irrational fear that told us we did not have the instincts to be typical parents. I was terrified to have another child, feeling that I had failed Aimee.  I felt very judged by other mothers, especially at the beginning, when people seemed to assume we just weren't doing tummy time or giving her the opportunities to learn. I let go of many friendships as others did not understand or were not sensitive. All those other mothers had similar problems to face and would spend all their time chatting together about sleeping, hair pulling, tantrums, screaming, messes, when their kid first walked, talked, or rolled over, ect. Things that seemed trivial to me. All I wanted was for my Aimee to be able to look at me, respond to being held, and remain healthy. I longed for her to ask for food, cuddles, really anything.

Although from this place where I sit now I can see more clearly, at that time I truly believed it was at least a tiny bit my fault. That, at the very least, one should be able to figure out how to feed their own child. Knowing how limited my instincts were, we almost hoped our second child would be disabled. We knew some things now about caring for Aimee and knew we could manage that. However, when Caleb forced his way into the world, participated in birth, immediately demanded attention, and cried for someone to goodness sake feed him, we knew this was not the same.

Caleb was immediately different. He knew how to eat, he could suction, he was awake. His eyes were taking in the world around him immediately. A deep wound in my heart received salve as I began to realize Aimee was limited from moment one. I didn't fail her in my inability to nurse. We didn't fail at encouraging her to develop. Our natural parenting instincts were not absent. 

Having Caleb has been astounding. We saw how quickly babies can change and grow. We immediately felt a response and connection from him. We were able to clearly see how different Aimee was and how much we missed out on with her. It has been rewarding, painful, and refreshing. Our view of parenting will be forever altered by our experiences with Aimee. We will never place the high value on pushing to meet developmental milestones. We will find joy in seeing our children make a mess, express themselves, and make choices. Encouraging our children to keep up with other kids has vanished from our values. We are so thankful for each moment.

Speaking for myself, I can say that this past 15 months with Caleb has resolved much of my fear. My insecurities that had told me I could not be a regular mother have slowly vanished. Ever so slowly I find myself able to connect with other moms. The pain is still there, but we can now see it and understand that there is no fault in it. I will always desire for Aimee to be restored, but now I know she isn't this way because of me. I can finally wave goodbye to the fear of motherhood.

3.11.13 The Younger Older Sibling

Caleb, Aimee's brother, is 15 months old today. 

He is stunning us daily with his abilities and constantly entertaining us with his silly faces, 
singing, dancing, and conversation. We are so very thankful for him.

Caleb especially loves to cuddle with his sissy Aimee. 
Even though he is almost 3 years younger, he is already beginning to take on the role of 
older sibling toward Aimee. He is protective and wants to participate in her activities.
Seeing him love on her is a huge blessing!


He enjoys playing with her.


He loves to lay with her and read books. 


He tries to help with her routines. 
For example, throughout the day we stretch Aimee's legs, arms, and spine. He tries to help her do stretches and even makes the accompanying stretching noise we make. 


 

He gives her toys to play with and helps her play her 
vision app on the iPad. 

He is even learning to help guide her hand to do it herself.






He has begun to move her around the house like we do when we are moving to a different room. 
In these photos, he moved her from the kitchen to the doorway 
of our bedroom when he went there to play.


He has learned to unlock the wheels of her chair to push her across the room.


He even wants to hold her on his lap.

Although he is still learning that rough play isn't an option, we are so proud 
of Caleb as he is beginning to assume the role of older brother to his older sister.



3.9.13 Vibrant


After nearly four weeks of no sickness and two weeks of positive weight gain, Aimee has come to life. Her eyes are radiant and shining. She is energetic and responsive. She is happy and beginning to make noises again. We had gotten so used to her being sick, we had begun to forget what healthy Aimee is like. Protecting her has made an incredible difference!

While we are blissfully happy with the changes, we don't know for sure what it means going forward. We are weighing the cost of exposures with the benefit of outside relationships. Keeping her away from everyone is effective, but also sad.

In other happy news, after last week's ABM lessons, Aimee has raised her right arm straight out from her body 4 times. We rarely see progress in her arms so this is a big deal! She also continues to do some fun foot and leg positioning.



2.26.13 From 3 to 4

Yesterday I was only 3 years old. So young.


This morning I woke up so much older. I could tell it was a special day right away because I got birthday kisses from Daddy.



Caleb gives me cuddles everyday.



Mommy put my hair in braids. It seems like as a 4 year old I would be able to wear my hair however I wanted, but Mommy decided without even asking me.


We had to drive a long way to go to my lessons again yesterday and today, but it's okay cause Mommy and I get to hold hands while we drive.


I got to have lessons with Naomi on my birthday. I like to learn from her.


Mommy and I got the whole day to ourselves. In between lessons, we went searching for the best birthday balloon in all of Bellevue. Mommy made me wear a mask cause she says people have germs that can make me sick.


Even though I had to wear a mask and we had to walk around and around in the cold to so many stores, we finally found it.


Mommy wonders sometimes how I can see anything through my long eyelashes.


After my lessons were over, we got to stop for an ice cream. We shared. I smelled all the bites and Mommy ate them all.



I got some really special presents too. Mommy and Daddy seem especially excited about taking me to see the light show at the Pacific Science Center as my special birthday outing. Sounds like they won't even think about taking me until there are less sick people around. I'm really patient though, so I can wait.


I got to stay up late too. After Caleb went to bed, Mommy, Daddy, and I snuggled together on the couch. They talked about when I was born and prayed for me. I mostly liked the snuggling.

 
I think I will like being 4.