8.11.15 Hoping for Health

I'm nervous to say it aloud, but I think the solution has been found. Aimee hasn't had a bad night since she has been on oxygen. Going from getting up 6-12 times a night to merely 1 short time is changing things for me. I am thrilled for Aimee's sake, but truthfully, I am excited for my own sake also. I am finding myself with the energy and mental capacity to get my health back in order, which for me means losing weight and getting off of anti-depressants. I didn't realize that the prolonged lack of deep sleep was the root cause of my challenge. Praying for this positive change to continue for Aimee and for ME! 

8.6.15 A Plateau

I have delayed this post for a couple of weeks. Writing feelings and future plans down is tricky. 

First off, Aimee is doing really well. We conceded to putting her on oxygen at night through her bipap about 2 weeks ago. Her Pulmonologists were unsure if this would cause her to have more central apneas, but in the end decided that it was a necessary step. I was not optimistic about this change, but was I ever wrong! Since starting her on continuous low oxygen she has gone from an average of 6 major desat episodes per night to 1-2 minor episodes. It is remarkable! We are incredibly thankful to have found a solution.

So, that being said, her carbon dioxide levels are high and she has begun to take long pauses in breathing while she is awake. At this point, she is in a stable place and we, of course, hope that this will continue. However, not knowing how long the plateau will be, the Pulmonologist has asked us to start the future conversation. He says that we have hit the end of the options with our current set up. If she continues to progress and we start to see prolonged central apneas during awake hours, the next intervention will be a trach with a vent. He says that now is the time, while Aimee is stable, to consider how far we will go and at what point we will stop adding interventions. 

It is an ugly conversation to face. I had always assumed we would do everything possible to keep Aimee with us. Now that we are further on the journey, I can see that may not be the most loving choice. Fighting and holding on tight is right and good, but there may be a line crossed in the future when loving her will be saying "enough". 

For now, we savor the day. 

7.13.15 Riding the Roller

We're still here. This past month has included all of the mountains and divets for the year it seems.

A 27 year dream fulfilled. My beautiful filly  Ellie was my 30th birthday present from my dad. An amazing journey that has made my heart overflow.

Aimee has hung around fairly happily through this month.

Listened to Anne of Avonlea with me.

Helped me weed.

Laid in bed feverish on some of the hottest days.

Had bloody noses.

Waited for doctors.

Fallen out of bed.

Had her first stitches.

And laughed about it.

Grown older.

Sweated in a broken down vehicle on the side of the freeway.

Snuggled a baby cousin.

Played with cousins in the sand.

And cried a lot of tears.

Her recent hip X-ray shows that her pelvis has turned more and her left hip is even farther out of place, though not completely dislocated. This might explain a lot of the tears. 

She also had an ultrasound of her kidneys and bladder this month in preparation for learning urinary catheters. Hoping this will cut down on the frequency of UTIs. 

God is good to us. We'll stay on this roller coaster and savor the ride. 

6.3.15 Thirty and Thankful

Today I am crossing the line from 20's to 30's. As a marker of significance, I am commemorating with thirty tidbits of thankfulness.

I am thankful for:

Strength much needed to complete my daily tasks

Health aside from my stay 30 years ago today, I have never been hospitalized

Family merriness and support with those I look like is a blessing 

Love I have not traveled the world, but I have experienced giving and receiving pure gold love 

Hope the lifeline that sustains me when I feel despair rising

New mornings a perfect day ahead with no mistakes in it (should Anne Shirley have her own bold line?)

Peace even in the bad days, the scary moments, peace is present

Experience the one thing that gifts me with confidence

My ED my favorite 

Babies innocence in a fuzzy, squishy package 

Promises even when they take 27 years to fulfill

My girl she is attached to my heart, a part of my heart

Caleb my hanny panny brown eyed love

Elliot the best surprise, the best laugh, and the sneakiest ninja baby

Mom she who labored for me, taught me, endured my eye rolling, and is generously loving

Dad if wisdom had a face it would be yours, ready to find gold, quick to laugh, and willing to have faith

Ed's parents those who brought him up and gave him so many useful skills

Home a place beyond our wishes and more than we knew to ask 

Motherhood day to day pains, but so many worth it moments 

Marriage the shelter our relationship is during storms around us, a trusted fort

Books writing and words I love, reading and listening I escape  

Chocolate no thankfulness list would be complete without saying "thank you Jesus for chocolate"

Senses how many wow moments of taste, touch, sound, and sight 

Music dancing along is my main motivational tool to clean house and make dinner

Perspective how much I can appreciate the words pouring from Caleb's mouth or the sneaking actions of Elliot 

Me funny to say it, but I am thankful I get to be alive and be this person

Rain refreshment and an excuse to snuggle up with a cup of tea

Patience yours with me as I am learning and slowly growing

Forgiveness those who have been able to stand in the middle of the push away and even come back to love me still

Memories playing horse at recess, the walmart frosting trips in Buic, cousins camps, please do not change my castle songs, midnight closet calls, bagels and orange juice, target parking lots, garland and chocolate fudge taming, lavender and silver hearts, uno games in the water bed... Much to cherish and many to laugh

After thirty years, I can officially say, I am thankful. 

5.20.15 All Worth It

I'd like to complain. 

That isn't what this blog is for? 

Oh. 

I'll attempt to tell you the facts. 

Yesterday Aimee met with her Neurodevelopmental specialist. As we had already surmised, her heart is doing well and her brain is unchanged. Meaning the increase in issues are all due to wiring problems. Unfixable and not understood. 

Aimee will be having a renal ultrasound and then we will meet with urology to learn urinary catheters. We are currently spending an hour each evening doing gravity enimas by rectal catheter. Both needs can be traced back to that ol' wiring problem. 

Last week we had the back up rate on Aimee's bipap increased to 18 breathes per minute, meaning if she isn't breathing on her own at that rate, the bipap will turn into a basic vent and use pressure to make her breath. It had been the worst week for sleep. She doesn't appreciate being breathed for and so is refusing to breath altogether. Nights were already challenging. This made them impossible. She was up, turning gray, more than a dozen times a night (twice the typical number). We would spend 10 minutes getting her oxygen back up into the 80's. 

It might be too soon to say, but the last two nights, she seems to have accepted the change finally. We are praying that this change will mean avoiding oxygen for a little bit longer. Oh, and hoping for sleep. 

The other big change discussed in this appointment was regarding school. Due to her increased dependence on the bipap and at times needing it during the day, we are being encouraged to push for home education. Having just finally settled into having Aimee ride the bus and getting a short break from caring for her on 2 mornings a week, we are struggling with this decision. What is best for Aimee is highest, but what keeps us all afloat and sane ranks pretty high too. 

-Aimee and I took a break this weekend and watched a girlie movie together. Her sweetness is beyond words. She is worth it all.-

5.12.15 Disappointing Good News

The Brain MRI test results show "No focal brainstem or focal brain parenchymal abnormality to explain the patient's worsening central apnea."

Although this is good news that there is nothing to fix , it is bad news... There is nothing to fix. I won't actually talk with a doctor about it until next Tuesday, but I am quite certain they will say it is another "wiring issue" that they don't yet understand. Jesus help me. 

Aimee is doing so well in some areas. She is more aware, responsive, and awake then ever. Yet, she is having more issues than ever with everything from cues to breath, to pee, to regulate temp, to have BM, to regulate blood pressure, and to relax muscles. 

One day, one issue at a time. 

There is this pretty sunshine to get us through though.

I love Aimee.

5.8.15

A few more pictures from Aimee's big day. She was in such a great mood the whole day. She laughed and snuggled in during the echocardiogram. It was pretty cozy. They set up a movie, snuggled her with blankets and pillows, and turned down the lights. It lasted about a half an hour. Although it was interesting, I really didn't understand much of what was on the screen. 

Here she is all ready to breath the strawberry flavored air... And she is laughing. 

Daddy was with us the whole day and he got Aimee to wake up. She really responds to his voice.

It was the strangest anesthesia experience ever. After waking up in recovery, Aimee was extra energetic. She was waving her arms and crossing her legs in ways we rarely see. It was almost like she had woke up from the most refreshing nap ever and then had some kind of stimulant. 

Now we wait for the full results. Wishing for a correctable issue to be found, though with Aimee it is nearly always a mystery to the doctors.