This month baby is photographed on Mustang Rose Border available at Jones & Vandermeer! I've had my eye on this fabric for a long time. It's as lovely in person as I imagined!
The CPAP machine finally came this week, nearly 3 months since I originally brought Eleni's apnea to the pediatrician's attention. Maddeningly, we were advised by the respiratory therapists that brought the machine that it would be wise to have another study done before using it very much. It seems her doctor may have been cutting some corners, and without more testing we won't know if the machine is helping or hurting her. I am just so angry about the whole situation. This is breathing we are talking about, people. Breathing. It's kind of important. Now I'm waiting again, unsure whether to use the CPAP or not, unsure when the tests might be scheduled, always unsure.
We're also waiting on an occupational therapist (since end of May) and waiting on a nutritionist (just got on that list, since baby is getting older and still can't take any food by mouth), waiting on an official vision diagnosis so that baby can start getting some help there too. On Tuesday we see a neurologist who will read Eleni's follow-up MRI and tell us what he thinks is likely possible for her. The following week, on my birthday, she will see the developmental pediatrician so we can hear just how far behind she is. These are our realities, so there's nothing to do but face them. I knew that 6 months was going to be hard. And here it is.
I hate that she is six months old. I wish we could put time on pause, so that she could heal and then resume life as a more-typical baby. A baby that smiles or laughs or babbles or can hold her head up. The kind of baby that you can take to the park or to church. I really do think she'll eventually be able to do some of those things, but she may not be a baby then. I do try to enjoy her now just the way she is. So much easier said than done.
Just this morning I asked Aria to clear the suction machine. It's a machine we use to suck secretions out of her airway so that she doesn't choke or aspirate them all, given that she can't swallow. After using the machine, we clear the line with some water to keep things clean. Liam's done this lots of times, so I assumed Aria had too. Turns out no. She used so much water to clear the line that she flooded the filter. No matter, I have two back up filters. But... oh, they gave us the wrong kind and these won't work and the machine can't work at all without them and baby sounds like she's trying to breathe underwater and she has a low grade fever and whoops, we're late for our walk with our friends. Tally ho. Be sure to enjoy that walk! Right.
Ok, official end of rant.
Let's talk about progress. What's been good this month?
First off, we tried a new Anat Baniel Method practitioner by the name of Josie Davenport in Florida. She was great! Mom and I loved the way she treated Eleni like a little person: talking to her, giving her the benefit of the doubt regarding intentional movement, praising her for what she can do already and even holding her when she was fussy to soothe her. Eleni and Josie have a sweet connection.
I found myself letting go and relaxing on that trip. It felt so unusual, so foreign. Definitely refreshing for all of us.
- Eleni's apnea and breathing remain hugely improved.
- Picking up her head independently a good 4 inches from the ground during tummy time. She can't hold it up, but she picks it up and drops it down many times each day. I know she'll get stronger with all that practice.
- Picking up her legs often, so much so that I was finally able to get some photos! Occasionally she holds them up. We'd love to see a kick.
- Closer to independent rolling. Eleni's learned to twist through her chest better, swing her arms up and bring her head forward to assist with rolling. She also pushes with her feet and gets a good deal of momentum. Truly, I don't think she'd be nearly this far without ABM. The therapy really helps her find her muscles. It seems like she'll figure rolling out sometime soon...
|she makes a face and winds up before giving her best effort!|
- In fact, she's rolled over a few times this month, all by herself, when in a position with leverage or momentum, such as rolling out of my lap. We're getting there!
- Left hand is often held softly, instead of fisted. Brandon recently got the hang of working on her hands and says that can be "his thing." Loved to hear that.
|softer left hand|
- Many things that started last month are getting more clear or frequent, such as: sound startle, fussing when suctioned or being lowered into her bath, face responsive to touch.
- Holding head properly about 25% of the time, when held with lots of trunk support. Yes, the spinning is translating to every day life!
- Continuing to be more alert and also to consolidate her sleep into longer naps. Some 1+ hour naps happening this month.
As we've raised money for Eleni's continued progress through Anat Baniel Method (ABM) therapy, I've been thinking about the other little ones out there who do not have the opportunities that my baby has. We are so fortunate to be known and loved by you all! I'm so glad to share that I've arranged for Eleni's fundraiser to also help other children as well. Let me tell you how!
Do you know what got us really going with ABM? Eleni was given a small grant for lessons in May/June from Access to ABM, a small non-profit that gives grants to children through practitioners across the country. Our nearest practitioner in Asheville chose to extend her 2015 grant to Eleni, based on need. The grant partially covered the cost of lessons so that we could feel responsible committing to three sessions spread out over about 7 weeks. By the time we had used up the grant, it was completely clear to us (and her current physical therapist) that ABM was helping Eleni far more than regular physical therapy. Thus, we were motivated to raise funds to keep her going.
I am pleased to announce that an anonymous donor has volunteered to give matching funds to Access to ABM, so that other children will be able to experience the healing and hope we've found in this therapy. They've agreed to match at 10% of the amount raised for Eleni in our YouCaring Fundraiser, up to $2000. Our goal amount is $20,000, so if that goal is reached, the donor will give $2000 to Access to ABM! That amount would fund grants for two children to try ABM therapy in 2016.
Eleni's YouCaring Fundraiser "Breathe, Move, Eat, See" will conclude on September 1st. All monies raised via the fundraiser still go directly and exclusively to Eleni's therapy expenses. Monies are collected without any YouCaring fees and delivered regardless of whether our goal amount is reached or not. We are about $5000 shy of our goal, but I'm not stressing about that. No way. I am thankful. Everyone has already been so generous. May you be blessed as you have been a blessing!
Note: Access to ABM, founded by Marcy Lindheimer, is a division of Butterfly Educational Arts, Inc. and is tax exempt under Section 501(C)(3) of the U.S. Internal Revenue Code. All contributions are fully tax deductible and 100% of all monies go exclusively to ABM lessons for special needs children. Contributions may be mailed to Marcy Lindheimer at 2109 Broadway Apt 9-93, New York, NY 10023-2148, and made payable to Butterfly Educational Arts, Inc.
Butterfly Educational Arts is a very small operation dedicated to education. Access to ABM is a project within the nonprofit. All operating costs are volunteered or paid for by at the founder's expense so that 100% of Access to ABM monies go directly to lessons grants for children.