Eleni is 4 months old. It's odd how time contorts under pressure. It seems like so much more than 4 months of trauma - the shock, the worry, the tears painfully stretching towards hope. It seems like so much less than 4 months of her babyhood - the cuddles, the lullabies and morning walks. I'm sure, in part, that's because she hasn't really been with us, peacefully at home so very much. In fact, this month she was hospitalized for a full week.
4 months old equals 1/3 of a year old. It means we're that much closer to deadlines that will shed light on how much functionality she's likely to gain. It means we're nearing her 6 month follow-up MRI and its accompanying serious diagnosis. It means that if she doesn't start smiling soon.... will she ever?
And so I still have trouble talking about her in this space because I don't want to burden you with negative energies. I'm tempted to share only the snapshots that hide her challenges. Like this gorgeous photo of her still-blue eyes on Carolyn Friedlander's Ladder Lines in Sage. I chose this fabric exactly for this purpose, to capture that lovely
shade of blue while I have yet the chance. Aria's eyes turned from this
blue to brown, sometime in her 4th month. I wonder if Eleni's will
In this photo she looks as healthy and functional as could be...
But sadly, this is how we normally find Eleni - eyes rolled up and towards the right side. She does occasionally make eye contact, but not every day. She has never tracked an object.
She has developed a very strong preference for turning her head to the right and now added to that she'll twist to the right repetitively and with great effort, seaming to try as hard as possible to turn on her side. Our therapist is not sure if it is a learned, voluntary behavior or a primitive reflex. I think she looks adorable in the above photo and you may not have given it a second thought, but she's actually resisting as grandma was trying to roll her on her left (not preferred) side.
And here grandma gently lifts her legs, hoping to encourage her to relax, rather than repetitively twisting to the right. See how her head is turned to the right? It is hard for her to find and maintain midline (looking straight), especially on a hard surface.
Ok, but things aren't all bad. It's not that she isn't making progress, it's just that I'm not willing to share the good without sharing the bad. I want to, need to share this journey with you, but not the fake version. The real deal.
This is my baby girl. She's sweet, content, generally a good sleeper despite her apnea. She's still fed breastmilk exclusively via g-tube, but she's growing well and her tummy handles the feeds well. She likes be rocked, being sung to. She likes her ABM neuromovement lessons. She does not like car rides. In fact, I think she gets car sick!
And, I guess, most of all she likes me? She does. But it is hard for me to feel that sometimes, especially on nights when her apnea chases away sleep for 5 1/2 hours or after days strung together without eye contact, never a smile.
Eleni is making progress with holding her head up. She can bring it up from a slanted position and hold it up as long as she likes. It stresses her out to be flat on the ground, so we only work on tummy time like this. She seems to have plenty of strength to arch her head back and to bring it forward, but not the ability to find a balance in a fully upright position. We always support her head.
This month she was hospitalized for the second time since NICU, again for a cold virus. Because of her neurological condition she does not swallow often enough. When her body makes extra secretions due to a cold, she can't keep up with swallowing them down. Instead, she aspirates her secretions and her lungs become compromised. This time she needed more medical assistance to breathe than she ever needed in NICU. The above photo was taken the day before her release, soon after they removed the IV from her dear little hand.
Over her hospital stay she was diagnosed with obstructive apnea. This means that her throat flops closed sometimes, often when she is falling asleep or waking up. A sleep study this July should reveal if she needs oxygen assistance at home or even surgery to protect her airway. At the very least, this apnea is what keeps her up some nights for hours, falling asleep and waking with a gasp or a struggle, over and over again.
Well, that's not all of it, but I think that's enough. The difficulty swallowing, the apnea, the g-tube feedings, difficulty moving and seeing and not smiling - all of it is due to her brain damage. It's so frustrating that conventional, insurance-covered medicine has n.o.t.h.i.n.g. to help her brain, the root of all her challenges.
In the last month I have entered action mode. I am researching and reading about possible therapies for her brain, contacting experts from Toronto to California, scheduling out the next few months of travel for Anat Baniel Method (ABM) neuromovement therapies and more. We are trying homeopathy, craniosacral therapy, essential oils, laser therapy, reflex integration and who knows what else. Some of these modalities are well studied, such as laser therapy, others are more experimental, but rather affordable. All of them are non-invasive and completely safe. If it can't hurt and it's not expensive, we're going to try it now as much as we're able. We figure if it doesn't help her when she's so young and malleable, then it probably wouldn't help her when she's five. I guess I'm also thinking to get some of this out of my system. If I don't I'll always wonder, what if...?
Thank you for asking last time how you can help. I have set up a fundraiser for Eleni's medical expenses at YouCaring.com. I really hate when I feel pressured or guilted or in any way emotionally manipulated to give money, so I'm going to do my darndest to share without any of that. Thanks for the benefit of the doubt.
Ok, I also want to update you on how baby's ABM lessons are going and what progress Eleni has made through the two lesson intensives she had in June. Since this post is getting so long, I'll include all that info in a post mid-July. We're headed to Chicago for a week early July for ABM lessons with one of the best practioners in the country. I'm hoping for great things! Oh, and we're staying with a quilty friend in Chicago, which saves a ton of money. Thanks, Stephanie! If anyone happens to have a spare room in Gainsville, FL; Chicago (west loop) or Asheville, NC and would like to host us, let me know!