My loves

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Our family

Monday, November 24, 2008

ok, just realized how long it's been since I updated. It's a lot busier taking care of my grandaughter Taylor and Hannah :) Taylor is 12 weeks old today and getting so big....she smiles and coos at everyone.
Anyway, Hannah is tolerating the urine caths a lot better than I thought...sometimes she actually looks relieved. We are getting way more urine than I expected...even with wet diapers at times we can get up to 300cc's! I will call the urologist next week and give them an update. Not sure where we will go from there...
Her seizures are about the same but some of them are very intense even lasting as long as 75 seconds....we see neurology on 12/2. No other dr appts that I can think of.
We had noticed that she is getting longer so we measured her this morning and she is now 40" tall! Still about 35lbs.
She has had a lot morevery thick secretions the last couple days but hoping that is the weather since everyone else is miserable too...
I changed the background to a Christmas tree since I am ready to get ours decorated..Hannah and Taylor will love all the lights.
I just want to wish everyone a very blessed and happy thanksgiving. My blog is called Joan's blessings and I am so blessed..I have a wonderful husband of 31 years, 3 beautiful daughters, 2 sons in love and a beautiful princess for a grandaughter!
I am also blessed with a wonderful mother and family and friends, and so much more, Thank you for all your continued prayers for us...some days are a lot harder than others and it seems like housework and other things (cooking, etc) never get done but I know I am doing what the Lord has me to do right now, taking care of Hannah and Taylor....

Monday, November 17, 2008

Special Needs Blog
I have been following this blog and today's post on what do you see, sounds like I wrote it...ok, better than I could write but it says what I think :)

What Do You See?

Posted: 14 Nov 2008 04:47 PM CST


Written by Teresa from Samuel's Miracle

*when a tiny baby sucks its bottle and swallows?

I see something my son may never be able to do.

*when you take your child’s temperature?

I see 97.6 because my son’s brain no longer understands that it’s a degree colder than it should be.

*when you see diapers at the store?

I see that the largest size is a 6 and my son is already wearing a 5 and I wonder what we will use when those don’t fit anymore.

*when you get an invitation for extended family campouts each summer?

I see a list of campouts I will be lucky to go to because I somehow have to schedule them between therapies and doctor visits and work and all the responsibilities of caring for a special needs child.

*when children are making their Christmas lists each year?

I see hours of wandering through the stores hoping I can find something that Samuel can enjoy or even begin to interact with.

*when you think of retirement?

I see a myriad of worries like how will I lift a full-grown man when I’m 70 years old and what will happen to Samuel when I’m not here to care for him anymore.

*when you see the latest fashions for your child?

I see shirts that need to be extra long to cover Samuel’s g-tube when he’s arching his back, pants with drawstrings because his waist is so thin, socks that need to be tight because he will kick them off and shoes that need to be soft because he likes to kick me .

*when you look at children’s furniture?

I see beds that Samuel will roll right out of or beds that he will inadvertently hurt himself on. I see beds that need to be adjustable for when he is sick and can’t swallow or breath well and beds that need to lay flat for when he is healthy and wiggly.

*when you see birthday invitations?

I see the one birthday party invitation that Samuel got last year from his friend at preschool. I see a little 5-year-old boy who saw nothing wrong about inviting his immobile, nonverbal friend to come to his party – a little boy who actually insisted on it. And that warms my heart.

*when you walk in your house?

I see a walker, a stander, a wheelchair, a bath seat, a therapy table, a crawling slide, floor mats, therapy balls, communication buttons, switch operated toys and a 42 inch long, adorable red head in a padded crib that is soon to be too small.

*when you get in your car?

I see a huge car seat, a huge stroller, an oxygen tank and an emergency pack full of extra diapers, clothes, medications and feeding supplies.

*when you see a full bathtub, a toddler eating peanuts or a kid’s backpack?

I see 3 different ways to sustain an anoxic brain injury and I obsess worry about it.

*when you see people whining about their lives (this includes myself)?

I see people who don’t appreciate what they have – the ability to stand, to walk, to talk, to contribute to life. I see people who are forgetting how fast things can change and how quickly that can be taken away.

*when you get your health insurance bill?

I see a bill large enough to be a house payment that I prioritize high above my house payment because even though I can’t afford to pay it, I REALLY can’t afford NOT to pay it!

*when you see a child staring your way?

Almost always, I see someone with genuine concern and curiosity about my son. Children’s hearts are so pure that they literally just want to know what Samuel CAN do. They never ask about his inabilities. They just want to know what his ABILITIES are. And they want to know them so they can interact with him. The thing I love the most is they aren’t afraid to just ASK.

*when an adult is staring your way?

I see someone who has had too many years of worrying what to say and how to say it and how to be politically correct. Honestly, I wish they would just ASK because I can see them staring – no matter how sure they are I can’t.

Sunday, November 16, 2008

more new pics

I just realized it's a Sunday again...guess that is when I am updating :) I do have some new pics of taylor ...figured I better put them on here before melissa gets upset LOL
I had to take Hannah to get her flu shot last week and while we were there she got a meningitis shot and a chicken pox booster since she had chicken pox before she was 1 yo. She would normally get the gardasil vaccine but the dr laughed and said "nuns don't get cervical cancer" we all laughed :) guess Hannah could be compared to a nun :) She got weighed and is staying the same 34lb 8oz. Weighed Taylor while we were there and she was 10lb 11oz...she went from the 19th percentile to the 35%...we had noticed the chubby legs and dimpled knees.
one pic is the "girls" with Hannah's nurse and our friend patti taylor...taylor and mommy at a baby shower, looks like she was waving...daddy and taylor are supporting their team, the steelers...the rest of us are ravens fans...

taylor just looks so cuddly in her hat and car seat...she is laughing and talking a lot more now...little miss princess. I am having fun with her but mommy still doesn't like leaving mom has been coming and helping me some once in a while...

jenn & bob got a new puppy, he is a terrior with a white "W" on his chest so they named him whitaker and call him whit ( like adventures in oddysey's whits end) I don't have a pic of him yet. they aren't going to get home for Thanksgiving but will for Christmas...just found out that my sister Pam will be here for Thanksgiving...yeah, she lives in FL and I don't get to see her enough either.