Thursday, February 26, 2009

Doing some preschool

As a teacher, I of course try to keep up with what Taylor needs to know to enter Kindergarten (although, I find myself focusing on a lot of 4th grade skills since that's what I teach! HA!) I'm beyond thrilled that my daycare provider and friend is going to start trying to do some preschool stuff with the kids (she used to do this but had stopped due to some other things going on) Now that she's got a daughter who's entering K next year she really wants to do preschool stuff two days a week with her K daughter, and the other 3 preschool kids there (Taylor included!) So, I made some copies for her and bought them some books. They'll work on letters, numbers, colors, shapes, days of week, months of year, counting, etc. Taylor is good at recognizing colors and shapes (as you'll see in some scanned pics of today's work we need some practice on actual coloring!!) I don't plan to scan every preschool paper (although I do plan to save them!) but I scanned these. I'll be doing preschool with her once or twice a week this summer too. I know she's smart and I know she'll learn quickly in K but I also know that there's a ton of stuff I want her to be prepared for and this preschool exposure will help! YAY! Oh, and that's her name written by her (except for the y, she still needs help on it)

It's done!

The surgery started late (doesn't it always??) but we're now home and Grady is pretty much his normal self. He was extremely upset and sensitive at first but now he's same old Grady. Hasn't wanted to eat eat but has snacked on goldfish and gatorade.
They had my give him his albuterol even though he's not been needing it. His breathing and heart stayed great through the procedure! Yay! He's doing fine with a little Tylenol.
Thanks so much for the thoughts and prayers!

Wednesday, February 25, 2009

Good news

Grady gained a pound. His chest is very clear. The pulm. was very pleased. The surgery (for, not a serious one, but with his history it could be so that's why all the stuff with getting clearance for it and all) is tomorrow at 8:15.
Thanks for all the prayers!

Tuesday, February 24, 2009

Please send us some prayers

Could you please say some extra prayers?
Tomorrow is Grady's pulmonologist appt. We're praying for a good weight gain and a very clear chest xray so that she will give clearance for the ear tubes. The appt's at 9am.
IF that all goes well then we have the tube surgery scheduled for 8:15 am Thursday morning. We have to be there at 7:15 am.
Praying this all works out well. Also praying that my students/classroom aren't a disaster by the end of the week (out Wed. am, out all day Thurs. for Grady's surgery, out all day Friday for a training meeting!)
Please add my nephew Davus to your prayers tonight too. His appt. with the hematologist is Wed at 11:00am. Praying for good results and answers.

Sunday, February 22, 2009

A good weekend

We've had a good weekend. Ryan was with the kids on Friday, I had them Saturday while he worked, then we were all home today. I took Taylor to church (still keeping Grady out of the nursery for a while) and then we just hung out at home. I decided to cut Grady's hair again. I knew the scissors would take too long so I busted out the clippers. I think it looks good. He looks older I think.
Anyway, here are some pics of the kids and a video of them being silly. It's after bath and Taylor's hair isn't fixed and she's eating a vitamin.

Thursday, February 19, 2009

Bible verses to ease the fear, worry, and anxiety

Thanks to some friends who provided me with some verses and this awesome site to look up verses, I'm feeling more at peace about Grady's appt. on Wed. and my nephew's appt. on Wed.

Not a verse, but a reminder from God:
Are you worried about your future? Those who worry do not know how safe they are with Me, so they take matters into their own hands and remove themselves from My protection to do things their own way because they are motivated by fear and not faith. Those who put their faith and trust in Me are not worried because they know Me. They know they are safe with Me. I really am your safe haven, says the Lord. Don't worry, and I will count you faithful.

Matthew 6:34 "Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.Proverbs 18:10 The name of the LORD is a strong tower; the righteous run to it and are safe.

Ephesians 3:20 20Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,

Draw near to God and He will draw near to you. James 4:8

Give all your worries and cares to God, for he cares about you. 1 Peter 5:7

And we are confident that he hears us whenever we ask for anything that pleases him. And since we know he hears us when we make our requests, we also know that he will give us what we ask for. 1 John 5:14-15

Psalm 34:4 (New International Version)
4 I sought the LORD, and he answered me;
he delivered me from all my fears.

Philippians 4:6 (New International Version)
6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

1 Peter 5:6-7 (New International Version)
6Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time. 7Cast all your anxiety on him because he cares for you.

Philippians 4:19 (New International Version)
19And my God will meet all your needs according to his glorious riches in Christ Jesus.

Matthew 6:25-34 (New International Version)
Do Not Worry
25"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? 26Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? 27Who of you by worrying can add a single hour to his life?
28"And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. 29Yet I tell you that not even Solomon in all his splendor was dressed like one of these. 30If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? 31So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' 32For the pagans run after all these things, and your heavenly Father knows that you need them. 33But seek first his kingdom and his righteousness, and all these things will be given to you as well. 34Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Mark 11:22-24 (New International Version)
22"Have faith in God," Jesus answered. 23"I tell you the truth, if anyone says to this mountain, 'Go, throw yourself into the sea,' and does not doubt in his heart but believes that what he says will happen, it will be done for him. 24Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours.

Proverbs 3:5-6 (New International Version)
5 Trust in the LORD with all your heart
and lean not on your own understanding;
6 in all your ways acknowledge him,
and he will make your paths straight

Friday, February 13, 2009

Please Pray for.....

on February 25th my family needs prayers. Actually before that and then on that day. Grady has a pulmonologist appt. at 9 am to do a weight check and a chest xray. We need a weight gain and a clear xray (and need him to stay healthy between now and then) Hopefully we'll get the all clear for the tubes to be put in his ears. If so, I'll be calling the ENT on the way home from pulm. to make the appt. for that procedure!
My nephew, Davus, is 10 wks older than Grady. He's having some low iron levels with bloodwork (even on prescription iron drops) and the ped. has referred him to a pediatric hematologist (sp?) at St. Vincent here in Indy. Davus' appt. is the 25th as well (11am) and we need prayer for him that the hematologist can give some answers and that this isn't something serious.

Thursday, February 12, 2009

Celebrating Valentine's Day a little early

Taylor and Grady usually don't go to daycare on Fridays so my friend/daycare provider planned the Valentine's Day party for today. Here's Taylor and Grady at home this morning and then at daycare this afternoon. The other kids are my daycare provider's children (she has 6 of her own and Taylor's friends.

Sunday, February 8, 2009

Feeling so very blessed

I've been trying to write this post in my head for over 24 hours. I'm sure that it won't come out the way my heart wants it to but I've got to try.
Last year, we were in the hospital over 40 days with Grady. 10 days in January, 5 days in Feb., 25 days in March, and then 2 days in August. During our Feb. stay (which was one of the easier ones but still hard and scary) the Riley Radio-Thon was going on (we were at Riley Children's Hospital and the radiothon was raising money for them).
Yesterday, while driving to eat at "Crapper Bears" (as Taylor refers to Cracker Barrel) with my inlaws, we heard the Riley RadioThon on the radio (duh!) Now, this radiothon ALWAYS makes me cry (even before having a "Riley Kid") but I knew this year would be harder. So, we're listening to some of the stories (I only made it through one before bawling and having to change the station and this was a "good ending" story!) Anyway, we're listening to all that Riley does for kids and all that kids go through and we're thinking back to all that Grady's been through and my Grady Boy is in the backseat hollering, laughing, screaming, spitting, to beat the band. I mean, you couldn't have asked for a better "Then and Now" moment. Last year at this time he had been vented and very sick but the worst was yet to come (March) and this year he's appearing 100% (well, don't count the unclear xray, lack of weight gain, and bad ears....we'll get past those too). I was sad to hear about the "sad ending" stories and even the "good ending" stories got me choked up but it was the fact that we'd been through some of the same stuff and more (or less) than many of these families and now we were driving to eat with a perfectly happy healthy baby in the backseat that really got to me. Do you know how very blessed we are? There were one or two times when Grady's future looked bleak but our God carried him and us through it. I don't know what God's will is for us or for Grady but I do know that I will be thanking God every day for healing our son and giving us this perfect baby to love on and be amazed by every day.
I know in comparison to some we don't have a "Riley Kid" or a "Riley Story" but those 40+ days of watching my baby be poked, prodded, drugged, vented, tested, etc. were the hardest of my life so far (and hopefully ever) and I'm so very thankful to Riley and the drs./nurses (well, most of them anyway) for helping Grady recover and come home. I'm so thankful to the OT and PT ladies who helped Grady this summer. The videos/pics below of that 14 month old boy playing outside weren't something I thought possible this past summer. I knew he'd walk and play but before his OT and PT we (and they) had concerns about his development. Man, look at him now!
Like I said, I knew this post wouldn't get the thoughts and emotions of my heart out but I had to try. It's not eloquently written but it's the best I could do.
Thank you God for our Mister Grady.

Please Pray for......

Cora went home to be with Jesus today. Please pray for her family.

Abby is fighting leukemia and is in a very rough time right now.

Playing Outside

Saturday, February 7, 2009

We'll try it

So, I got some PediaSure and Carnation Instant Breakfast tonight at Walmart. I mixed some PediaSure with his milk before bed. He drank a normal amount. I was worried he wouldn't like it but he seemed ok with it. We'll keep trying to add a few calories here and there and hope to put on a little weight by the 25th!
He already drinks whole milk and likes the drinkable yogurts. He eats a lot of cheese and pudding too.
I tried to get him to eat pbj today but it was a no go. Taylor won't eat it either. I long for a day when lunch can just be pbjs!

Pics from our Saturday

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Any advice?

Have any of you ever had a baby/toddler that isn't gaining weight well? Grady has gained (according to pulmonologist's scale) only 8 oz since August. Now, since August he's also started moving A LOT more (walking/running) and the boy is pretty much never still. However, with his history she really wants to see more weight on him. He eats pretty well. Since his Daddy is very thin, Grady may just be thin too. But, I'm looking for ways to add some extra calories so that when we see the pulmonologist again in a few weeks we can show some weight gain. What did/do you give your child that helped them gain a little extra?


Please pray for Abby. She's in the most difficult, painful, life threatening phase of her treatment for leukemia. Pray for her healing and comfort.

Tuesday, February 3, 2009

Today's happenings

So, today I took Grady to the pulmonologist to see if she would clear him for getting tubes in his ears. Since he's got such a history in the respiratory department and since the tubes require anesthesia then she has to give the ok before he goes under.
Anyway, he's sounding much better and she was pleased. She ordered a chest xray since she hadn't seen one since August. It wasn't as good as she was hoping. She won't clear him until at least 3 weeks from now. We go back in 3 weeks (Feb 25) to get another xray and hope that what she's seeing in his lungs is cleared up. She started him on zpack antibiotics in hopes of clearing up his chest. I think we'll stop the augmentin that the ENT started him on (waiting on confirmation of this from ENT) and do the 5 days of zpack and then start the augmentin again (the augmentin is to keep the ear infections away until he can get the tubes) She said she feels that the chest xray is showing the end of some sort of viral something (which we're all getting over) but she's not comfortable saying he can do the anesthesia just yet. I'm disappointed because I wanted to get this stuff over with. But, I'm glad she's taking good care of him. I have to just have faith that this is God's way of telling us that it's not the perfect time for Grady to get the tubes yet.
The dr. also brought Cystic Fibrosis back up. She's concerned because Grady hasn't gained weight (8 oz since August) Although he's a tiny bit taller and he's started walking since then. He is skinny but he does eat a lot. She also said since Ryan is so thin Grady may just be thin. She thinks he poops too much too. But then she said since we've had the CF test and he's not presenting AT ALL like a CF kid (poop isn't horribly foul smelling, no rigid muscles, no salt taste on skin, etc) then she's not really too concerned.
Then she mentioned some sort of rare cilia disorder where the cilia don't move like they should. She said we'd have to biopsy the cilia. If it is this disorder then he'd get chest therapy and daily antibiotics, etc. She also doesn't really feel it's this. She said this disorder is even more rare than CF. She said we'll keep it in the back of our minds.
So, for now, we're continuing (a different) antibiotic, continuing Flovent inhaled steroid, doing albuterol as needed, trying to get extra calories in him and bring him back in 3 weeks for another chest xray.
I wish she hadn't even brought up the CF and the cilia disorder! I don't, in my heart, think he's got either of these but it doesn't help to have it in my mind! Praying that his chest clears and we can get the tubes put in and start moving ahead!
Now, off to take Taylor to the pediatrician for this cough she's had for weeks that comes and goes. It's back now with renewed strength it seems! She's coughing til she pukes and busting capillaries in her little cheeks because of coughing so hard! Hoping the drive to and from the dr. is quick and smooth (roads are bad!) and that he can give us some answers

Monday, February 2, 2009

Isn't that just the way?

Why is it when one of your children finally gets "better" then other one always starts having problems? Grady is finally on the upswing from this latest flare up with his breathing. We're still doing breathing treatments and seeing the pulmonologist tomorrow but the steroids seemed to help and he's doing much better-- hoping she'll clear him for the tube procedure. Then there's Taylor! She coughed so hard/long last night she puked (again! This has been off and on for about a month! She was doing so much better but now the cough is back) so tonight we used the prescription cough med that the dr. called in last time and I gave her some breathing treatment to try and open her chest up. But she's already coughing in bed. Praying that she calms down and sleeps with little to no coughing and NO MORE puking from the cough. Poor thing coughed so hard last night (despite all I tried to do for her) that she busted little capillaries in her face and now has little red pin prick dots all over her cheeks (this happens with her fair skin if she cries hard too) Anyway, taking her to the dr. tomorrow afternoon to see what's going on!

Sunday, February 1, 2009

Grady's first haircut!

Well, Taylor didn't get a haircut until she was past three years old. I cut it this past summer and I recently cut it again. I did a better job the first time, not so please with this last cut but luckily she only goes to daycare and it will grow!
Grady, however, was getting quite the little mullet going. His hair is pretty straight in the front but pretty curly in the back. The back was a little out of control! So, I bit the bullet and cut the back and sides a bit. Now, if you know Grady and how he's in constant motion, you'll be able to forgive the slightly uneven neck and ear lines. I am now thinking I may take a tiny bit more off the back (to catch a few stray curls) and maybe attempt trimming the top (I was too afraid to touch it tonight). However, for the first haircut it wasn't too traumatic (for him or me!) and I think it looks decent.
BEFORE (right after bath)