Saturday, December 20, 2008
Taylor is getting so big, she will be 4months old on New Years Day! She has figured out that if she smiles at someone, they smile back :) She is starting to play with toys and loves to blow bubbles. She coos and talks a lot...she loves the Christmas tree that Grampa put up for her :)
Here is a pic becky just took of her, it shows so much of her personality
I am so thankful that jenn & bob will be here for Christmas, they are arriving today. They couldn't come for Thanksgiving. Having them here and Taylor add to the excitment. She is getting a lot more fun to play with now that she gets excited about toys and people :) We are very blessed. That is why I call my blog joansblessings
I got this request from another CB friend Molly's mom.
I think it's neat that my Hannah is Hannah Grace and this little girl is Hannah Faith \o/
I came across a story of a beautiful girl named Hannah Faith. Hannah has a special Christmas wish that I thought all our readers could help with and if any of our other caringbridge friends want to pass it along to their readers, feel free. When I went on her website, I immediately was attached, it’s FROGS!
Here is her story, written by a family friend:
Many of you may remember my dear friend, Chris Garman, who lost her battle with breast cancer 2 years ago. When she was first diagnosed with breast cancer, she was pregnant with her third child. Her doctors didn't think Chris would live through her pregnancy without treatment, so they took a chance & gave her chemo while she was pregnant. Chris survived her pregnancy & had a beautiful, healthy little girl named Hannah Faith. Chris died when Hannah was three.
Hannah was diagnosed in October with glioblastoma multiforme, a rare and incurable brain tumor. She has been given 12 weeks to live without treatment and 11 months if treated with radiation. Right now she has lost most of her motor skills. She is confined to bed and cannot really do anything or play with the gifts she is getting from people, but she LOVES getting cards - she has gotten so many from people she does not know and just loves to have grandma read about the people
who send them and see their pictures and is so proud of all her cards.
Her room is just filled with cards.
When asked what she wants for Christmas she said she wants to see how many Christmas cards she can get. Many people have passed this wish along to their churches, prayer groups, friends and family. There are school
groups where children are making her cards. People are including pictures so she can see who it is that is sending her the card.
If you would like to help with her wish, you can send a card to her at:
259 N Reading Rd
Ephrata, Pa 17522
**Hannah’s dad requested the cards be sent to his work address since they are receiving so many cards at their house.
THANKS! Feel free to pass this along to your own prayer group, church, school, etc. Let's see if we can have the cards coming in big postal bags for her this Christmas, since it will be her last holiday.
P.S. You can also send my email to anyone you forward this to, if they
have questions. firstname.lastname@example.org
Read more about Hannah, see pics, & stay updated on her progress at
Please pray for this special family. Her dad seems amazing and is even positive and grateful, despite what he is facing. Through this journey, God has given me the opportunity to learn of so many courageous people. Sometimes, I am just in awe, This is one of those times.
Have a great weekend!
thanks again for the continued prayers and may you have a blessed Christmas and New Year!
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....
Wednesday, November 19, 2008
Monday, November 17, 2008
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 :)
Posted: 14 Nov 2008 04:47 PM CST
WHAT DO YOU SEE…
*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.
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 .
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.
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.
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
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 her...my mom has been coming and helping me some once in a while...
jenn & bob got a new puppy, he is a terrior mix...black 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.
Sunday, October 26, 2008
Monday, October 20, 2008
Hannah is our youngest daughter, she turned 13yo in July 08.
She has a very rare chromosome deletion. She is missing 4 bands on her chromosome #1 q 21-25. Kids with downs syndrome have an extra chromosome and Hannah is missing some...our chromosomes control a lot, hair and eye color, height...etc. Chuck and I have "normal" chromosomes so Hannah's deletion is what they call sporadic, it's not genetic from us even though it's genetic :)
Hannah is a sweetheart and a blessing to everyone who knows her. She is deaf/blind but we still don't know what she sees or hears...she does get mad when we go to suction her LOL This is one of my favorite pics of her...she takes better pics asleep, she wiggles so much and always keeps her hands in her mouth.
She is developmentally like a 3 or 4 month old baby. A lot of that is due to her deaf/blindness and her seizures and seizure meds. I like to think she doesn't know she is different :)
She has her own webpage that I keep updated but I may just start using this for most of her updates.
ok, so I somehow messed up and started two different accts for my blogs. Now, they are all together....sorry it has been so long, I couldn't get the other acct to work for some reason, it wouldn't take the password.
Hopefully now I have it ok :)
Taylor is 7weeks old today! It's amazing how big she is getting. At birth she was 6lb 7oz and on her 6week appt she weighed 9lb 10oz and was 21 1/2" long. She is smiling a lot now and cooing and talking too. Of course as soon as the camera comes out, she stops :)
Becky has to go back to work 2 weeks from today and that's going to be very hard for her. She is dreading it already. We are praying for a different job for her that she might be able to do at home. Taylor is going to stay with Hannah and I during the day so life around here is going to be busy and interesting.
I think Taylor has colic, she is very gassy at times and screams. Becky had colic as a baby and was miserable most of the time. But once she got over that she was a very good baby. Other than that Taylor is a very good baby...she sleeps good at night most of the time.
Becky and Taylor have been coming over a lot so she can get used to being here. We got a "wii" and the wii fit. Becky does it when she is here and I have been able to do it every day. Chuck even likes it when he gets a chance :) It's so much fun, most of the time you don't realize it's exercise! It's even fun to watch everbody else do it. It's helping us stay fit and since it weighs you everyday, it makes you more aware of how you are eating. The funny part is you make a mii that looks like yourself. But when you do the wii fit, it measures you and makes you look like you really do, size wize! so, if you are overweight, it lets you know that and you have to look at yourself like that, even doing the sports! It is worth the investment!
guess I will go for now, but will be back later...
Our first grandchild was born on Labor Day Sept 1,08. Taylor Jean is the daughter of our oldest daughter Becky and her husband Todd. Her middle name is Jean for my mom, her great grandaughter! Taylor is a family name too...my grandmother's maiden name was taylor and Zachary Taylor (a president) was my 4th great grandfather according to family members.
She is beautiful, of course, and we already love being grandparents...so much more fun than parenting :)
It's really neat to see how everyone has a new name or title since she was born. She is the first grandchild for both my family & Chuck's. So with a new generation everyone is new, our parents are now great grandparents (although we already knew they were ) we are grandparents, our siblings are great aunts and great uncles and the cousins are 2nd cousins...although I think my nephew Ben wanted to know why they weren't great cousins instead of 2nd cousins LOL And of course I have to say that Jenn & Hannah are aunts and Bob (jenn's husband)is an uncle!
At the last minute they had to do a CSection on Becky, Taylor seemed to be stuck and starting to get in a little distress. They were doing well...but now becky's incision is infected inside. I have to take her to the dr every day right now for him to pack it to get rid of the incision. Pray for her, this is very painful. Taylor is a very good baby and is adjusting well to nursing. They have been staying with my during the day so I can take her to the dr. Todd has to bring them before work so having to get ready so early in the morning with a newborn is very hard.