Wednesday, January 21, 2009

Toy-aholic

So, my 13 month old apparently has stashed toys in secret hiding places around the church in case of desperate need. Josh caught her opening a kitchen cupboard in the past to retrieve a toy that he didn't see her put there. He thought nothing of it. But yesterday, we stopped by the church briefly, didn't get any toys out while we did a few things and my sister in law noticed Ana going to the photocopier. We watched as she opened the bottom compartment which is for paper storage and chuckled in amazement that she knew how to open the compartment. Before we could take one step to go instruct her not to play with the copier, she quickly and purposefully pulled something out and confidently reclosed the compartment. She emerged, matter of factly and oblivious to adult supervision... with a toy in each hand, stashed for safe keeping in the copier lest mama and daddy not provide toys on one of our many hours at the church!

Monday, January 19, 2009

Update on neurologist

(Look at me sitting up at Christmas time with NO braces on!)


Gracie has had 12+ seizures in 2 months, but for the first time ever, she has not required the rescue medicine (diastat) each time - in fact, she's only used it 3-4 times. BUT she's been sleepy, cranky, insomniac, floppy... in other words, on the 3 meds (lamictal, keppra, and depakote) her quality of life has not been good.

So I was looking forward to her neurologist appointment:


Gracie's neurologist appointment went well on Thursday - we are stopping lamictal, keeping her on keppra and depakote (at higher dose), potentially starting a brand new medicine that is coming out at the end of January. We also have appointments to learn more about the ketogenic diet and vagal nerve stimulator. I was pleased that he listened to my concerns about Gracie still having seizures and more importantly not being herself on the three meds.

His eyes bugged out when I told him that we plan on moving to rural Honduras... haha!

Monday, January 12, 2009

December and ... potty training!

I haven't written in a while... December is such a fun month, but crazy! The transition from resident to attending was challenging as well... you would think that changing our lives from working 60-80 hours a week to now working 20 hours a week would be such an easy transition, but it was a challenge. My mentor wisely warned me that ANY transition causes the family to be in upheaval while we adjust...

We had a wonderful Christmas Eve Service at church, drove down to Josh's parents Christmas Eve to find out that Josh's brother Isaac had proposed to his lovely (now fiancee) Alicia! We are so thrilled! What a wonderful Christmas present!
We enjoyed the first Christmas in my in-laws new house and the kids met all expectations of being thrilled and cute with their (many) presents. I squeezed two more full days of work in and we headed to PA to see my family. They hadn't seen the kids since the summer! There was MUCH chaos in the McMillan house with nearly all of us kids there with our significant-others and now a total of 4 grandkids. My new niece, Ella, is a doll and I enjoyed holding the precious newborn!
Our trip also included meeting with some friends to share about our appointment with Action International Ministries - we loved our brief stay with our dear friends the Shatneys (Ana and their Tabitha are peas in a pod and would surely be good friends!) and the Killians, of course.
Josh is in Louisville, KY for two weeks taking two intense courses toward his MDiv. The end is in sight and we think that he could be done seminary by the end of next January!

My mom came to help me with the kids for a week - what a blessing! She and the kids took to each other quickly and had all kinds of adventures!

My biggest excitement is that Gracie is potty training! This girl never ceases to amaze us. I had tried her on the potty about 6 months ago and there was no connection - I didn't think much about it. In November I began to research potty training children with multiple disabilities and developmental delays. I started putting her on the toilet for bowel movement and she loved it! We saw a pediatric urologist at the suggestion of one of my adult friends with cerebral palsy and everything checked out great, so I was encouraged and on Christmas Day, I stuck her on the potty first thing in the morning. She stayed dry for two days straight through, despite being sick. She was so proud of herself! Now, she stays dry (pull-ups) except for some accidents. This is quite amazing considering that she has only ONE sign to communicate and is just simply bad at communicating anything beyond emotions.

I'm so proud of my big girl! I can see that she will be fully potty trained one day! We had envisioned always changing diapers, forever and ever... but perhaps not!

Otherwise, it has been discouraging as she is still not herself on her three anti-seizure meds. It's too much. The good news is that she is still having at least a seizure a week, but few have required diastat - a first for her. BUT, she spends her days in slow-motion, floppy, passive, and not doing her own skills (feeding herself, etc.). She also learned how to gag when she had the stomach bug in the fall and now spits out and gags on her medicine. FUN!

Ana is a hoot - she keeps us laughing and amazed as well. This 13 month old sings her alphabet, sings a few other songs, and has about a 12 word vocabulary PLUS repeating every word that we say. She has also quickly learned some signs from the Signing Time video that we've been watching with Gracie! She's a quick study and so sweet with Gracie - always trying to take care of her, tickle her, feed her, as well as take toys from her and sit on her... ;-)
We are planning on taking a brief trip (without the kids!!) to Honduras at the end of February to scout out our potential mission field! We're very excited for that tangible step!

Children's Museum of NH


"Music Matrix" was perfect for Gracie - a light touch on the brightly colored shapes makes a noise!


The girls enjoyed being in the Postal Service at the museum!
Ana thought big boy Timmy Shatney was very cool and really enjoyed playing piano with him!

video

Monday, January 5, 2009

Kids who need homes

Hi, friends - if anyone is interested, I know of some special needs children in Liberia who need families.

- a 18mo little girl with cp- mild to moderate
- a baby boy 6 mos who has the same condition
- a 1yr old boy with downs syndrome

If you are interested at all, let me know and I will get you in touch with the director for more information!

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