1.30.13 Sick Again?

Aimee had some untypical seizures on Sunday during the end of the church service. I think she must have had several more during the coming night as well. She has not been herself since. It would be normal for her to be sleepy and in recovery mode for 24 hours after that number of seizures, but yesterday her temperature started to rise and she was still very non-Aimee like. She is very sleepy, crying/whining, and jerky in her movements. Her temperature is still up this morning.

Please pray that we would have wisdom on how to keep Aimee healthy. These near constant sicknesses are really tiring for her and for her immune system as well. She has been sick every 1-3 weeks for the past 5 months. Do I need to keep her home 24/7? If anyone has suggestions, I am very open to hear them!

-Aimee's classmates and teachers made her this sweet sign since she can't be in school right now-

1.27.13 Says Who?

Time to update our 'About Aimee' tab. While we're at it, we thought we'd share a bit about Aimee from our perspective and bit about Aimee from a medical perspective with all of you too.

What We Say:

-Aimee is peaceful in the midst of storms. Her attitude is primarily full of delight, relaxation, and joy.

-Aimee holds the world title for best cuddler.

-Aimee is ticklish and she laughs at the sounds that make the rest of us cringe (screaming sibling, smoke alarm, fire engine, train whistles, high pitched tools).

-Aimee likes to hold hands and squeeze fingers.

-Aimee recognizes voices.

-Aimee is bright. She protects herself by going to sleep when she is scared, overwhelmed, or unsure of her surroundings.

-Aimee is self motivated. No matter how hard it is and how many times she cannot do it, she continually tries to hold up her head.

-Aimee is beautiful.

-Aimee is a ballerina at heart.

-Aimee likes country music, 50's, and 80's.

-Aimee is a mystery worth spending a lifetime researching.

-Aimee is limited and challenged; God is unlimited and not challenged by her situation.

-We love Aimee!



What The Doctors Say:

-Severe Developmental Delay- Aimee has developed to the abilities of a 2-3 month old baby. They expect her to remain at this "age" for the rest of her life.

-Microcephaly- Aimee has a very small head (.26 percentile) due to her lack of brain growth since birth. The growth in her face has been disproportionate and is causing little issues, for example her tear ducts have been forced to narrow and are continually clogged despite probing and stints.

-Delayed Myelination- The wiring that runs signals through the brain is coated with a substance called myelin, which allow these signals to run through quickly and to the correct place. When Aimee was a baby her myelin was severely underdeveloped, which did not allow her brain to form the connections it should have been learning to make at that time. The doctors believe this is just a symptom of her overall disorder, which is undiagnosed.

-Hypotonic- She has very low muscle tone, not lack of strength, but her muscles are too loose which keeps her from building strength. This causes lots of secondary issues, such as scoliosis.

-At Risk for Aspiration- Due to the low tone in her throat and mouth, it is considered unsafe for Aimee to take food and fluids by mouth. She has a feeding tube and receives a home blended diet through that. She also fights to deal with secretions like phlegm and saliva, which we use a suction machine to clear in order to protect her airway.

-Sleep Apnea and Hypoventilation- Also due to the low muscle tone, Aimee struggles to breath adequately while she sleeps. She retains excess carbon dioxide in her blood stream due to shallow breathing. She has been very sleepy her whole life and we think waking up hundreds of times a night is part of the cause. She is on a BiPap machine.

-High Risk for Respiratory Infection- Again due to the low muscle tone and her inability to handle secretions, the doctors' statistics give her a slim chance of living to adulthood, expecting her to begin to fight with pneumonias and eventually lose that fight. She is on steroid inhalers to help her prepare to fight the many illnesses that come her way.

-Chronic Constipation- Yet again due to the low muscle tone, Aimee needs help from medications, aside from lots of dietary supplements, to keep waste moving out.

-Congenital Bilateral Club Feet- She was born with club feet that were corrected through treatment.

-Hearing Impairment- She has mild to moderate hearing impairment in her both ears and wears bilateral hearing aids especially to hear lower tones.

-Cortical Vision Impairment- Her brain is unable to get many visual signals through, meaning her eyes see well and send the signal to the vision center, but her brain looses the information or can't interpret it most of the time.

-General and Localized Seizures- Aimee has multiple different types of seizures, both general tonic seizures that involve her whole brain at once and localized seizures that are only one part of her brain at a time. She is on a couple different medications to control them.

-Reflux- Partly due to muscle tone and partly due to constipation, Aimee struggles with reflux and is on strong medication to combat it.

1.23.13 What Might Have Been

As Ed was getting Aimee ready for bed tonight, she was quite energetic and doing some pretty fancy movements. I wish I could catch them on video. She has been arching her back way up off the surface she is laying on, I'd say a couple inches off. She has also been turning her head and throwing her arm up above it as a little baby does when learning to roll over. We are very proud of her for learning and attempting new movements.

As we were admiring her attempts, we began to imagine what might have been. We rarely go there. It's painful to acknowledge what you are missing, what your heart wants for your beautiful girl that, in human terms, can never happen. If she was a typical 3, almost 4 year old, we picture her playing make believe, taking dance lessons, swinging at the park. We imagine Aimee riding a tricycle, making cookies with momma, and wanting to go help daddy with his projects. We see tiny glimpses that we secretly imagine into full blown Aimee. She loves the sound of Daddy's tools, which I picture as her wanting to learn to use a drill. She points her toes and then raises her feet and arms as if to dance, we picture a ballerina.

We don't get to know why our lovely Aimee is not doing, and without a miracle, will never do those wonderful things. We enjoy her smiles, her laughter, and her determination. Yet, sometimes we must grieve for Aimee and for what we imagine she would be. And then we kiss her soft skin, wish her good night, and hope for the someday when the imaginings come to be.

1.18.13 Back In The Saddle Again

Trying so hard to hold up her head and succeeding for a moment!

She is back!
So glad to say that, as of Wednesday, Aimee is back to her joyful self. The return of her laughter has my heart majorly rejoicing.

We had our first vision therapy session again on Wednesday since before Christmas break. The TVI was surprised how thin Aimee had gotten, but very pleased with her visual attentiveness. We covered our dining room table with a dark sheet and put the light box underneath it. With the extreme contrast, Aimee would immediately turn and focus on the spinning stripes on the light box and would look away every time they stopped. She also looked at the therapist's face briefly. It is amazing when she clearly takes in visual input!

Yesterday we took Aimee down to the Pulmonary and Sleep clinic. The doctor was concerned about Aimee being sick so often. Although nothing has come of the sicknesses, she is worried that it is only a matter of time. We were again strongly encouraged to give her a flu shot, as well as, to use antibiotics with each sickness. She did not at all agree with our philosophy of waiting until we see signs of lung trouble to take her in to be seen. The concern being that by the time we could clearly tell with Aimee, as she won't be able to give us many indicators, it could be too late.

Although we did not agree to give her a flu shot, we did agree to keeping her out of school through the flu season, which is currently predicted through March. I communicated with her teacher this morning and she is in full support of this decision. We will have the teachers come for home visits, but no classroom time. We will also consider taking her in to be seen early on in the next sickness as a test to see if what they give us helps her to recover quicker.

The doctor also prescribed two different inhalers to be used with an air chamber. One she wants us to use twice daily as a preventative against infection and the other to be used to open the airway during sickness. We will at least use these through this flu season, possibly through the school year. It does make me sad when I think about how proud I was 18 months ago to not have Aimee on any daily prescriptions. She is now on a minimum of 6, up to 11, different prescriptions at least once a day. Boo. However, I am thankful to at least have some type of preventative, aside from diet/supplements that we already do. Here's to successful prevention!

We discussed sleep positioning systems with the doctor (like the one on the right by comfyliftbed). When she is well, Aimee does pretty good sleeping on a slight incline, but it isn't nearly enough when she is sick. We try to prop her up with pillows, but it doesn't work very well. The doctor said she would discuss the options with the rehab clinic and Aimee's Neurodevelopmental doctor to help her determine what might work best for Aimee. This could also help prevent respiratory infection.

We also met with the sleep clinic technician regarding Aimee's BiPAP machine. We feel like the humidifier portion of the machine is actually contributing to her sicknesses. They agreed to let us do a few day trial without the humidifier, since Aimee has a lot of secretions. We also needed help troubleshooting her mask as it has been cutting open the bottom of her ear every night. We are going to try to jimmy rig it with an ace bandage to see if we can stop the cuts. If it isn't one thing, it is another with this machine!

1.15.13 Quick Update

Just a little sickness update, for those praying. Aimee is doing really well. We are still keeping her upright as much as possible, on a limited volume and rate for her feeds, and she has a mild fever in the evenings. I have been doing chest therapy first thing in the morning the last several days. Her cough isn't strong enough to move phlegm up to her throat and I am finding it helpful for her. She is getting more active and alert though, which is a great sign!

1.8.13 Quiet Storms

Thank you for your prayers for Aimee during this sickness. Things may at times appear silent on our front. Sometimes those are difficult moments. We have cancelled this and last week's appointments/school days. Being housebound is, well about as exciting as it sounds. I love being home, but the peace of it is marred in illness. It is very exhausting to be tied to a suction machine, helping Aimee fight aspiration and dehydration while also caring for my little Caleb. So grateful for the friends who ordered a pizza delivery for us, the one who ran a needed errand, and the family who gave us soup. Your love to us gives us strength.

I am pleased to report that Aimee's fever has gone down significantly over the last 24 hours. She still has a deep, wet cough, but her breathing is regular. We are amazed with every minor respiratory trouble combined with her underlying condition that she has not yet dealt with pneumonias. Every doctor we meet with considers it miraculous and I certainly attribute it to the many prayers on her behalf. We are hopeful that this sickness will also resolve with no pneumonia. Please continue to pray for restoration of her immune system and protection of her lungs.

Thankfully I have Caleb's help today. His attempts to comfort his sissy are priceless!

1.2.13 Freed By Denial

The bad news is that our new insurance denied Aimee's formula claim. Although we make her blended food, we have a prescription for about 4 days of formula per month for emergencies and times when we won't be able to keep her food at a safe temperature. That few days worth of "medical food" is almost 2700 dollars per month, almost all of that 3000 I told you about last time.

Miraculously, the negative is a positive. If our insurance had approved the claim, after we met a high deductible, then 50 percent if this cost would have been covered. HOWEVER, because the claim was denied, children's home care will provide it to us under financial aid. That means no cost. Freed by denial. Huge provision!

Also, Aimee just came down with a fever this afternoon. She enjoyed 3-4 weeks sickness free. Praying for it to go quickly!