Wednesday, June 27, 2012

A Love Quilt for My Lovey

Justus received a very special gift last week. A package came, addressed to him - and we immediately ripped into it. Inside we found a sweet note from the wonderful organization "Love Quilts". Under the note, neatly folded, was a beautiful quilt. Themed after Winnie the Pooh, it was made by ladies around the country. Each square, beautifully stitched by someone who took time, just for Justus. On each square is that person's name, and where they are from.

Love quilts is an organization made up of a group of ladies that work on these gorgeous quilts. These ladies are from all over the world. Their desire is to bless little ones that have life threatening illnesses or issues.  Justus has a heart condition that falls into this category.

I can't thank you enough ladies! Your gift is one that will be treasured for years - and I'm sure this lovely quilt will not look so "new" and pristine, as it will grow worn from being snuggled by one very special little boy. That first night I tucked Justus into bed and wrapped that quilt around his body, I teared up .... with a quiet gratitude, for people who will never meet the children they stitch these quilts. I thought about their desire to simply bring a smile, or be a blessing. I was touched, and continue to be.


You can visit Love Quilts here

I also ask that you might keep Justus in prayer as we seek the advice of a pediatric specialist next week. Justus continues to have a swollen cheek. He has already been seen by his pediatrician, and a general ENT - who are guessing at what it might be, but are unsure as of yet. I am specifically praying we get a right answer next week, and of course that it is simply nothing of concern ...

Wednesday, June 13, 2012

Miss Ivanna Pants & Stuff

Well, first, let me apologize for the lack of posts. It must be so boring following this blog. I have a hard time etching out time to post - as it takes a bit of time to log in, post pictures blah blah blah ...

You understand ...

And as I type this I have a little Justus running to me upset about something. Lol. So goes it.

Ok. Justus is cuddling, and settled. So let's move on.

Life has been insanely busy. I do sometimes wonder what in the world are we so busy with? However, it isn't just one particular 'thing' we are trying to accomplish, but a whole lot of stuff mixed in with loving on these kiddos and just simply living life.

I won't bore you with all of that. 

I have found some pictures I took of Ivanna a month or so ago. They are her with a wrap around her legs. On the advice of her physical therapist, we have started to wrap her legs together every once in awhile to help her overcome 'frog legs', where she allows her legs be wide spread apart. The problem with froggy legs is that it doesn't train your muscles correctly - thus it becomes just easier to have your legs wide open - because that is how your body has adjusted. This is a common occurrence with children having Down syndrome, and it is due to low muscle tone. 

Ivanna is NOT a big fan of having her legs together. It is not hurting her in anyway - just out of her comfort zone, as she has gone years in developing the wrong muscles, so it's a habit that is hard to break.

I will mention that Ivanna is something of a Houdini when it comes to getting out of anything. She soon realized how to undo this wrap, and so we have started to do other things to help train her leg muscles. We have use the 'hip helper' pants, which are great, except Ivanna has learned if she just hikes them up, she can once again be unrestrained. Hip hugger pants are actually shorts with the legs sewn together.  Thus creating the same effect as the wrap. 

We are still playing around with different techniques. I am learning a lot from our wonderful physical therapist, of whom has really become a friend. She sees all three children in our home - and we love her. If your local and would like her name, just email me. Makes life a bit easier in managing appointments when three of those appointments can take place in the comfort of your own home.

Ivanna is going in for surgery on June 20th to have several teeth extracted. It requires surgery with anesthesia and will be done in the local hospital. The reason for the surgery is due to her adult teeth coming in behind her baby teeth - and the baby teeth refuse to loosen up. *sigh* Is this common with Ds?? So ... they must come out so her adult teeth can find their way to the appropriate place. I covet your prayers for her, as I always get a bit nervous at having to use an anesthetic. 

I am sure the outcome will be just fine.

*and yes, I realize Ivanna is wearing green dinosaur jammies. Sometimes you just grab whatever is closer - even if it is brothers pj's. (we're so stylish like that) Lol. *

Ok. Gotta run. I hear a crazy toddler making a racket somewhere in this house. . .  

Thanks for checking in. I hope you have a blessed day. 

Remember to hug your kids today, wether they are thirteen going on twenty or still a wee babe. 


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