We have been so blessed throughout our journey (you will hear this a lot!). Sissy (Millie's Aunt Sarah) was running in The Color Run, a fun and family friendly race where you start out in white and they throw a different colored dust on you at each K mark...and made these FABULOUS shirts!
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| BEFORE |
They say "Miles for Millie". She did a phenomenal job!! We LOVED 'em and sold them on a fundraising website with tremendous support!!
At the end of the race, this is what they looked like :)
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| AFTER!! |
That fundraiser was, in essence, a lifesaver!! The sessions booked SO quickly and everyone so was loving and supportive!! It helped so much, especially with me living at the hospital and our first trip to Cincinnati.
It has been a bit of an adjustment, me not working. My income supported the family, as well as provided WONDERFUL insurance, that's gone now. My husband owns a small landscape company, he does amazing work but we have had to put that on the back burner to tend to Millie.
But Millie has a few more medical needs that we must provide for (aside from medical bills...won't get started!). We had to buy a new travel system complete with a car seat and stroller. The car seat provides more support in specific areas since she has a compromised airway, it helps her breath for those 4 hour car rides to Cinci, 3 hour trips to Memphis and 5 hour trips to Mississippi, not to mention just going to and from doctor appointments and school. (Unfortunately we haven't visited family much, its just a bit hard....we miss them ALL terribly!!) The stroller is wonderful because it is one of the few that lays complete flat!! This allows her to lay on her side (since she can't hold her head up) and breath easier. THIS has been wonderful for getting her out and about (when we can.)and trying to keep some sort of normalcy with family life. (NOTE: The car seat works for now, and I hope it stays that way...but it may not be the answer. It may be that we need a more medically specific car seat which ranges in the upper hundreds to thousands.)
One of our next purchases will be a pack n play. At the moment, she and I sleep in the living room, on the couch (me) and love seat (Mill). Why not the bedroom? I need to be on eye level with her and have instant access to her, this isn't possible with a traditional pack n play. The problem with most of them is the inserts are half way down... we need a pack n play with a "bassinet" insert as close to the top as possible so when she needs suction or intervention she is easily accessible and we don't have to move her. I would really like to sleep back in the bed (LUXURY!) with the pack n play next to me, so I did some research and found a pack n play brand that was recommended for infants with medical needs. Bedroom! HERE WE COME!
We have also had family and individual donations, which I can not thank you ALL enough!! We are both fortunate to have such loving families and individuals around us!!!
Perhaps the biggest expense is therapies. I mentioned in the last post that the Anat Baniel Method (ABM) lessons we have been taking. We are learning now more than ever about how the brain functions. It was thought, up until the 90's, that the brain does not regenerate cells. Neuroscience now understands that the brain DOES continue to renew itself! Where Anat's system comes in is it uses small intentional movements to create new pathways in the brain!! (Convoluted? If you want to know more it is linked above.)
Anywho, we have a wonderful ABM practitioner here, Katherine :) Millie thoroughly enjoys these lessons. Katherine is very knowledgeable in ABM and works with several children in town and surrounding states (as well as around the world in her travels), however it is recommended for maximum benefit to travel to see Anat herself. On the ABM Caregiver facebook page you can see that people travel from all over the WORLD to have their special/medical needs children work with Anat. It would be sorta like going to Hank Haney for golf lessons; Bill Gates for computer help; Warren Buffet for financial advice; Yo Yo Ma for music lessons....you see where I'm going with this? Only problem is it's in CA. They book early and they book quick! Now, we have not decided on this yet. We would LOVE to, but its a big commitment and comes with a lot of planning and expenses! We are lucky to have an ABM instructor that will be visiting Katherine in March so we are hoping to book a whole slew of lessons then!
We would like to get her back to the chiropractor. Dr. W, her chiropractor, was so wonderful and really helpful. If she is still refluxing (which is what our pulmonologist suspects and is causing her inflammation), chiropractic care is wonderful for infant reflux! Another big one is acupuncture. There is a lot of research sighting acupuncture to help in cases of infantile spasms/epilepsy. We will also be reaching out to a homeopathic Dr in town that has had amazing results for seizures. But these options are not instant and need to be built up and maintained to a certain extent.
Then, there are always the "what if's". There is a whole department at Boston University Children's Hospital that focus specifically on microcephaly. What If Cinci just can't help us the way Boston can? Do we go to Boston? How? ....But I'm getting WAY ahead of myself. I know she will get better, whether we find answers or she does it on her own.
I hope that helps explain about WHY we are fundraising. As her mom, I don't care if it ALL comes out of my pockets. I will do everything I know, find and can to help Millie learn to hear, sit up, eat normally, reach for toys; not to mention learn to walk, run, skip, tie her shoes, brush her hair...little things that up until now I had no real appreciation for but are all miracles in their own rights.
You can go HERE to help. And thanks, sincerely!!
XOXO Millie and Mom
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