1.26.14 A Special Request

One month from today Aimee will be five years old (how can that be?).
In honor of this special milestone, we are putting together a book for her. We will be including posts from this blog, pictures from her first five years, and special notes. 

I would like to include you in this project. Would you reflect for a few minutes and then comment a memory you have of Aimee, a note about how she has impacted you, or even just a word that you would use to describe her? You are a part of her life even if you have never met her. Your prayers, your support, and your love for her are dear and should be represented in this compliation. Our email is EDR2005@gmail.com, if you would prefer to keep it private. 

Aimee and I visited the neurology clinic this week. Since our last visit in October, I had seen new seizures develop that I was concerned about. The doctor wanted to avoid admitting Aimee for an extended EEG to determine the frequency of these new seizures. He has one other drug he wants to try with Aimee before putting her on the priority list for the ketogenic diet. Apparently this drug was not available to be used before because she was too young. It has less side effects and may control all the types of seizures that she has, including the clonic ones, which are the more difficult to control. 

Before he could approve it for her though, we had to have an EKG done to check out her heart. She is always so patient with tests!
Even though I agreed with starting this new medication, I found myself grieving, almost nauseous on Friday night when I got the results and was preparing to give her first dose. Although she is already on a long list of medications, including two for seizures, this one really hit me. I hate giving her medications, especially new ones that have unknown results. If only I could just hold her, just hide her away from the doctors and protect her. Instead, I am the one to continually drug her, to torture her with treatments, to approve tests, to suction her although her throat already appears raw, to pull out a dozen eyelashes trying to keep her continually infected eyes clear, to continually tweak routines like she is a guinea pig, to interrupt her sleep during the night to adjust her leaking mask, to hold her down for a catheter or still for a blood draw. 


Love doesn't always look like what I would like it to be. 

1.21.14 Daily Miraculous

We so often pray for the miracle that we ignore the daily occurrences, which are simply miraculous themselves. A taste of divine is as pure, as unexpected, as gloriously undeserved as a bowlful.

I've shared with you some of the ways we have been blessed recently, but there is daily more to share. Aimee's appointments have gone well this past few months and we have made great progress in her health. It is a delight to see her relaxed and smiling so often again!

This week we began the process of rewriting Aimee's IEP for her upcoming 5th birthday. Originally I would dread these meetings. It felt as if all the focus was on Aimee's inabilities. Setting new goals only reminded me of what Aimee was missing. Now I find this process to be one of the most encouraging parts of the year.

On Wednesday, Aimee's teacher and I sat on the floor of my living room and reviewed this past year. Each tiny skill that a child can do is highlighted on the page. Even though we are marking skills that are even far in the past for baby Elliot, it is very satisfying to see progress. If her teacher merely asked me what Aimee has learned this year, I would have a difficult time seeing improvement. Instead, as we had in front of us the gross motor skills from last year with only two highlighted skills, we were able to add five more that Aimee has acquired since then. She can now bring her hands together to midline. When an object or person is in that sweet spot right in front of her chest, she can reach out with both hands and grasp it/them. She is able to hold onto some objects, like a tube or hand, for multiple seconds. In her vision therapy we have also seen her excel. She is even beginning to look to her right side.

Sweet cousin Lily playing with Aimee and her vision therapy light box.

Aimee loves the snowman!

Even Caleb gives it a thumbs up!

I am thankful that three or four years ago I did not know what type of goals we would now be setting. Around her first birthday the goals we set were hopeful and desperate. We wished that she would be able to move about the house. We hoped that she would be able to sit up on her own. We worried that she would not be able to walk by her next birthday. How silly it all sounds now. Our goals for this past year were that she would be able to reach out and touch someone else, that she would begin to build relationship with peers, and that she would broaden her range of expressed emotions. Even these may have been only met in a minute way, yet progress, movement towards wholeness is still miraculous. We can still feel the glimpse of Aimee inside moving towards outer expression.

Another miracle this past week came as an unexpected gift from Aimee's dear Nana and Papa DeVoe. As I have detailed many times, Aimee has had an increasingly difficult time sleeping. We find that she will sleep when we hold her or bring her into our own bed, but I was getting very little sleep and Aimee wasn't able to use her bipap. We heard about weighted blankets for individuals with disorders ranging from sensory processing, autism, dementia, anxiety, ect. It seemed like the deep pressure stimulation might mimic the effect of being held and provide Aimee with that secure feeling that allows her to sleep. Not knowing for sure and seeing the cost of the blankets, we added it to the 'someday for Aimee' list and her Christmas wish list. What an exciting surprise to receive one in the mail for her this last week! Aimee had been crying when she wasn't held for nearly 6 hours up until bedtime that day. A true test for the new blanket. Almost immediately after laying her bed, covering her with the weighted blanket, and bundling her with the warm shearling blanket from her Grandma Starla, Aimee fell into a deep sleep and did not wake up all night long. We were shocked. Since that night, she has only woken up a few times during the night, been awake through one night, and only cried to be held twice. She seems well rested most mornings, although quite stiff from laying still for so long.
Aimee's new blankie
We are really excited and hopeful that this blanket combined with her new bed, her bundling blanket, her bipap, and the melatonin will keep her warm, secure, and asleep through the night for many nights going forward!

Wait! There's more! :)

Another miracle this week came from my dear sister Jen and brother Isaac. Our incredibly generous church family gave money and supplies for making food for Aimee and for us. Jen and Isaac then tripled the value of these gifts by making an enormous number of meals. Really enormous. Take the amount you picture and then look at this:
For real.
It isn't even all of it. When we realized how many completely made meals we getting we had no idea how to store it all. To top off the over-the-top blessing, we were given this freezer from an amazing family in our church. This whole freezer is full of food for Aimee and for us. And yet, truly, there is more of it in the house freezer. Serious. This is one of the biggest blessings we have ever been given.

It would be impossible for me to describe the tension that been lifted from our shoulders and the depression that has decreased in my heart this past week. We have been loved and blessed and encouraged beyond what we even could have asked. A beautiful taste of heaven in our home!

Every day is miraculous.

1.1.14 New Year, New Game

There is an embarrassingly large number of moments I should have already shared with you. This past month has been filled with blessings, heaviness, sleepless nights, emotional days, new equipment, and a new look.

The first that I must tell includes so many of you. We have been uplifted in the midst of our weary season by an overwhelming love from our church family, our friends, and our own dear family. Our church has embraced us closer even as we have had to stay isolated at home to keep Aimee healthy. We have received funds to stock the freezers with made ahead blended meals for Aimee, dinners for us, and even been given food and diapers. Our friends have kept connected with us even from a far with notes, mailed gifts, and prayers. Our families has loved us in unique ways. It has been especially amazing to watch uncles, aunts, cousins, and grandparents learn to delight in Aimee and connecting with the boys. Thank you for traveling this journey with us in the way that lifts weight from our own hearts. 

In continued pursuit of more sleep, we have attempted many changes for Aimee at night. The biggest being a new bed topper. It is a quality memory foam with a 30 degree wedge on the top and a mild incline at the foot. Here are a few photos:
We rearranged rooms so that Aimee is now on her own, have attempted natural solutions (essential oils, oil of magnesium, chamomile, melatonin), rocking her to sleep, semi swaddling, bundling to improve temperature, and more. She has shown major improvement in falling asleep at bedtime, but mild change in staying asleep. Emotion filled evenings are still too common.

HOWEVER, the big game changer for this year is her new cough assist machine. We have seen dramatic health changes with this machine combined with her new bed and chest PT. Multiple times in the last month, extra mucus that would normally become infected causing drawn out illness has been able to be loosened and moved to her upper airway where it can be suctioned out. The cough assist has also improved her healthy oxygen saturation levels by about 3% on average, giving her that much farther to fall when sick. As her pulmonary doctor described, this machine is a major game changer for kids with neuro-muscular disorders, brain damage, and developmental delays. It is keeping them out of the hospital, dramatically reducing infections, and really keeping them alive longer. AMAZING!

And finally, a new look for Aimee. We chopped off her ponytail. Isn't she such a cutie?!