Frequently Asked Questions from Addie's Fan Club
How Old is Addie Now?
Addie is 10 months old; her adjusted age is 8 monhts for prematurity; and developmentally, she is still about 1 month old or less.
Is Addie Growing?
Our little budgie is growing! But only lengthwise. She's dropping weight in ounces because we now have a new therapy for her: CPT. Chest Percussion Therapy (CPT) requires us to turn Addie's continuous feed off for about 3 hours a day to prevent aspiration while we pound her lungs with little squishy pink paddle handle thing-a-ma-bobs. Mama bear is on the offensive, however, and Addie is getting more calories in her food to ensure she loses no more weight. We're even going to try peanut butter!
What is CPT exactly?
Here's a little more about CPT from Chris' letter to our missionary three weeks ago:
Addie's other appointment was with a respiratory therapist at Primary Children’s who trained us on a new treatment that is supposed to help get her off oxygen. We were a little apprehensive about going to the appointment, since she has been doing so much better. But she obviously is still on oxygen, so we want to do all we can to strengthen her lungs while she is healthy. The treatment is similar to what they do with kids with cystic fibrosis, except not as involved. We agreed to complete the treatment consistently twice a day for the next couple months as a trial period. Mom became very emotional at one point during the training when she realized how involved it was and how much time it was going to take. Addie’s day is already so full of meds, care, and therapy, that adding one more thing seemed overwhelming. We have been trying to simplify her care, not make it more complex. However, if we ever want to get her off oxygen to allow her to be more mobile, the extra time now may be necessary and worth it in the long run. The treatment first requires that we turn off her continuous feed for an hour beforehand and during the time we do the therapy. We start by giving her two puffs of an inhaler, which is supposed to open her lungs. We then begin thumping her chest and back with these small pink rubber plunger looking things they gave us. They trap the air and cushion the blows so that the vibrations can work the mucous out of the lungs. We were pleasantly surprised to see that she not only tolerated the beatings, but has actually fallen asleep during them. They seem to act like a massage and relax her instead of making her tighten up and seize. The poundings last for three to five minutes and are repeated in eight different locations. We then put her on a cough assist machine, which is currently on order. You have to put a cup over her mouth while it inflates the lungs and then exhales for her. The resp therapist said that it will pull the loosened mucous up so that Addie can cough it out. It is strong enough that it will pull snot out of the nose, but is not meant to suck everything out like a vacuum. At the appointment, they showed us how to the use the machine on her, and she again tolerated it very well. We finish up the treatment with another inhaler, which has a steroid in it to keep any inflammation down. What we have noticed so far is that the inhaler seems to already be helping. The first night after the treatment, I found Addie sleeping with the cannula pulled out of her nose. The monitor showed that she was oxygenating at 95 percent and never went into alarm. I do not know how long it had been pulled out. As she started to stir, and awoke later, she immediately went into alarm. So at least when she is asleep, she appears to be getting enough oxygen. Hopefully we will continue to see improvements. We would love to be able to pick her up and take her anywhere we want without being attached to a tube or dragging an oxygen tank around. It would hopefully strengthen her against future colds as well. She needs strong lungs to clear that mucous out on a regular basis.
Is Therapy Helping?
CPT surprisingly has really stimulated Addie in some amazing ways. We're into week 3 with it, and she's learned to suck a binky (because we have to swab the steroid out of her mouth), strengthen her neck a bit more (because she gets regular tummy time to beat her back lungs), and she's brought her right hand to mid-line once more (to try to keep us from thumping her chest).
How Many Seizure Meds Does Addie Take Now?
We continue to wean off seizure meds. We're down to our last 2 of 7! In doing so, Addie has appeared! She's got an opinion about things! She tells us when she wants to be held! She's started to cry! And . . . her eyes haven't rolled as much. I, must say, I LOVE her little puppy-dog whimper of a cry. It totally melts your heart. Who knew that so much of her zombie-ness came from the meds?
Is Addie Still on CBD?
We have found that CBD is more effective as a rescue med for Addie's seizures than for the daily dose we used to give her. That's good for our pocketbook because we only give it to her when her seizures get out of control instead of force feeding her with it twice a day . . . which brought about much gagging and seizures just in the process of administering the oil
Does Addie Still have Seizures?
As far as seizures go? We still have some really HARD days! But, then we have really GOOD days occasionally as well. Her seizures are longer and stronger now, but she'll have hours of no seizing in between. Where she used to seize over 100 times per day, she now only seizes about 40 times per day. We're better able to comfort and kick her out of her seizure mode through assessing what she needs physically. Sometimes we can only cry with her through them; other times, a change of position, a cool cloth on her head, or even a change of diaper can ease the seizing. We do what we can, but mostly we just pray for angels to surround her and inspire us to know how best to help our beautiful baby.
How is Addie's Hearing?
In the hearing department, Addie's hearing aids were stimulating seizures. The audiologist turned them down for us, but I get nervous about putting them in. On her good days, I don't want to trigger seizures and on her bad days, I don't want to exacerbate them. So--she's mostly without them and we do signs on her body to communicate with her. We also continue to talk to her. When nurses, therapists, and other people hold Addie and I walk into the room and start talking, they all tell me, "She heard you!" I've heard this from at least four different professionals or extended family members, let alone those in Addie's immediate family. Yet--the fire alarm will go off (we love to cook bacon!) and Addie will give NO response--not even a flinch. Maybe she's getting something "hear" or there.
Can Addie See Yet?
Addie has made great strides in the vision area. Her eyes, rolling less, are better able to see things--even if for the briefest moment. It is good to see that she can bring them down to look at something. She doesn't have much control and often her eye muscles will spin out like a car tire after catching a glimpse of what we are trying to show her. But . . . she's making progress. I'm excited for the future when she will finally see our faces for the first time, focus on us, and see us smiling and weeping for joy. That will be a beautiful day.
How are her parents holding up?
Y--A-A-A-A-W-W-W-W-N. Oh--excuse me. What was the question? ;-) We of course, are delighted with the tiniest things when it comes to Addie! A hand to her mouth, an eye movement downward, a calm little body, and especially good, natural sleep. We used to take so much for granted--now Addie shows us that every little bit of progress is monumental! Life is so beautiful! Believe it! See it! Live it! Love it!
