So how's Makily doing?

I've had quite a few ask me that lately so I figured I would do an update.

We went to Neuro a week ago. My sister Deborah went with us.


The doctor and I discussed Makily's last abnormal EEG. He said she was just having "mis-fires that can lead to seizures but NOT seizures".
He said Makily DID NOT have to have a 48 hour video EEG. He will do another EEG in the office in three months. He did increase her medication by another half a pill and Makily has done fine with that.

She LOVES school and is doing VERY well with that. She has art twice a week with a "regular" kindergarten class. Carrie's son Logan is in there and he knows Makily well so that makes me smile.



Makily also has P.E. twice a week. I am proud to announce she is taking SWIM CLASS for P.E. I knew that once she got into kindy they would let her do swim class and so I made sure to get the forms filled out when school started. They said she does well in there and really enjoys the water.

This morning I woke up an hour late. I decided not to even rush around, I was going to be late no matter what. I got the kids ready and took Makily to school. She smiled when we drove up and started clapping when her teacher came in the room to get her. She LOVES school and it makes it so much easier to take her there seeing how happy she is being there. She has also made a new friend. A lady named Suzanne from ocalamom saw Makily's story and showed her life video to her daughter Kate. Kate is in the fifth grade and she fell in love with Makily. She just so happens to also go to Makily's school.



Kate asked her teacher and Makily's teacher if there was a way she could come in and play with Makily a few times a week. They all agreed and so Makily's friend Kate comes in and reads to her and plays with her in her classroom. HOW SWEET IS THAT? It just gives me a lump in my throat thinking about how my Makily has touched Kate.



We took the kids to a splash park last weekend and J LOVED it.


Makily not soo kean on it. It was too....well "splashy" for her taste. I did hold her under a mushroom fountain with me for a while. and she tolerated that. It was very relaxing and I love snuggling with my girl and having those "moments" where the whole world fades away and it's just her and I.


Later Allen asked me if it bothered me that people were looking at us. I told him I hadn't noticed, I have learned to force myself to not pay attention to that type of thing. It would have ruined our moment. Some times are harder then others. I like to think they were staring because they just thought she was so darn cute.

She ate several gerber cherry puffs happily yesterday. In between puffs she would sign the word EAT over and over again. Makily usually puts her hand to her mouth often but this seemed very deliberate so it made me very happy to see her doing this.

Chance Meetings, Small Towns.

So I had a lady named Aimee on OCALAMOM contact me asking me questions about foster care.

A few days after we chatted she friended me on facebook. The next day I had a message from another nice lady named Jeannette. She said Aimee had shown her our story and that our kids had a lot in common.

I saw she had a blog and immediately read the whole thing...with tears streaming down my face.

Jeannette and her husband Steven have a BEAUTIFUL six month old baby boy named Caleb.

When Jeannette was seven months along the doctors diagnosed Caleb with Trisomy 18.
Babies with Trisomy 18 are usually miscarried or stillborn. Those that do make it usually don't survive past the age of one. Of course there are always that handful that prove the doctors wrong and outlive all the statistics.

Even still the doctors say that Caleb is terminal and he is at home on hospice with his loving family.

Strangely enough, his mom had mentioned Caleb had a therapy session. I asked her where and she said with Elon Bruner....this is Makily and Baby J's therapist. Her appt was right before ours and I got to meet Jeannette, her father and of course sweet Caleb yesterday. She even let me hold him and I felt so honored. I sensed she was nervous about it though and it reminded me to much of myself when Makily was that little. I was always nervous about people holding her that she wasn't used to. If she wasnt held a certain way she would cry and get upset. Her airway was such a mess that first year and crying always exasperated that. I just wanted to give her the biggest hug and tell her how much I understood her. I get her.

Caleb though is amazing. He is truly a sweet, perfect spirit like my Makily and it isn't very often I get to meet another child like this. His little cry reminded me so much of Makily in those early days. Holding him was much like holding her when she was that age. So tiny and frail, but it was so obvious she was in there and was a fighter from the very start.

Knowing how rare Emanuel Syndrome is and how rare Trisomy 18 is, I find it very strange that both of our families are living in the same small town. That we were connected in the way that we were and ended up having therapy on the same day at the same office...around the same time.

Wow.

I spoke with Jeanette briefly today and she said it was very good for her and her father to see Makily. That seeing my baby gave them hope.

She does not know it but that statement did things for my soul I can't describe.

According to medical science Makily should have died many times over the years...and she is still here. Still fighting, still stealing my heart every day.

I've been struggling with my faith lately. I can't say that I have resolved all of those issues but this chance meeting and connection means something. There is someone out there connecting us. Putting us in the places we are supposed to be at the right place and time. Sending us to those that need to be uplifted in only ways other families like mine can uplift them. I don't think Jeannette knows what our meeting did for me, what holding Caleb did for me either.

I know God is out there, I have to believe that, but I sure don't understand why he does a lot of the things he does.

It's not my place to question God....but I am ONLY human.

Please visit Caleb's blog today and offer his family words of love and encouragement.