Peter was at the hospital for that first admission.
So thankful for where we are one year later!
Its bound to be a GREAT, amazing weekend!
My heart feels such relief!
Its bound to be a GREAT, amazing weekend!
My heart feels such relief!
Saturday, January 28, 2012
Thursday, January 26, 2012
Monday, January 23, 2012
Middle of the night
Hanging out in the boy's sleep study room*. About 1:30am, I gave up attempts at sleeping. I get too restless and my legs are aching. Trying to sleep means thinking about that so a distraction sounds better. I wish this could be our last ever "tail" (and overnight together in a medical facility) but I can't be sure of that. But I've come up with best case scenario (as if I could be God).... One more EEG in 2 years after being seizure free all that time to find out his EEG is PERFECT. Wouldn't that be GREAT! Lord, hear our prayer and thanks for all the ways You already have!
I guess it is sorta nice to have a few hours of quiet peace.
*This study may be a little of a luxury (if that's possible) to follow up on his apnea after T&A because of his neuro history. And we are getting it in at the end of insurance year... Woohoo. We know how to have a good time.
*This study may be a little of a luxury (if that's possible) to follow up on his apnea after T&A because of his neuro history. And we are getting it in at the end of insurance year... Woohoo. We know how to have a good time.
Saturday, January 21, 2012
To Remember...
We've talked a little recently with Peter about him going to school when he is 6 and riding the school bus (his dream!), not taking a nap, etc. This week I was talking with him one night at bedtime. I said, "Peter, you know that Mommy is going to be really sad when you go to school." (Those of you who know Peter well will be able to hear him say this...) His response was, "Don't worry, Mommy. Lily will take care of you."
************
If Lily is crying after bedtime Mike can go up to her room and say, "Lily, do you want me to tell Mommy something for you?" Lily will laugh with happiness and say "yes". (Do other people's kids laugh when they are getting something they are excited about?) Then Mike will say, "Do you want me to tell Mommy that you love her?" Lily will say "Yes", put her thumb in her mouth, lay down and shut off the cries like they were never there. (Vis versa works too... she likes for me to tell Mike that she loves him or that she wants to go to Dog Wood Park, go on a bike ride, or go on the bus.)
It is such an interesting thing to learn your kids ways and what makes them tick, what works to comfort them, what assures them that they are known and understood.
***********
Overheard this weekend:
Peter speaking to Lily (we all know Lily likes to pretend to be a Mommy):
"Come on, Mama, get on the firetruck!!"
(the way he said 'Mama', I pictured a large lady with an apron tucked b/t her bosoms and belly... but he was talking to little petite Lily!)
***********
Overheard this weekend:
Peter speaking to Lily (we all know Lily likes to pretend to be a Mommy):
"Come on, Mama, get on the firetruck!!"
(the way he said 'Mama', I pictured a large lady with an apron tucked b/t her bosoms and belly... but he was talking to little petite Lily!)
Friday, January 20, 2012
buddies
found this on Mike's phone...its from when they went camping over Christmas break.
how very cute and handsome are they?!
Delight
Remember the swing?
They LOVE it! And RUN to it when we get home. Lily gets solo rides when Pete is at preschool.
"I wanna go REALLY, REALLY HIGH!"
(random: a fun/cute word that she likes to use when she changes her mind is 'actually'...
"ack-she")
her smile, her joy
the innocence & simplicity
I'm glad I get to share in it!
Its going wayyy toooo fast!
This morning while Peter was at preschool, I cleaned up/out the upstairs. I found a bag of "fancy" dresses that were handmedowns. Lily wanted to wear this one. She said she was a Mommy after she put it on (note orange pants under it). She asked me if I have a dress like it (funny!)... not really, of course ;) but I told her that yes, I do have some dresses. She then took care of Baby Audrey while I organized. They went to "Dog Wood Park" in Pete's room. Again... delight! Seriously, could there be a sweeter way to spend my mornings!
We did a craft this afternoon that I saw on Pinterest (my new fave!) and may be every preschool/elementary teacher's standby craft? We used construction paper instead of scrapbook paper. We added some glue and glitter to make it "spawk-a-lee".
I was impatient so stapled before the glue was dry... I'm sure it will be quite floppy but cute for the Bug's door. :)
Love her! In general, the kids are at such sweet ages and such a sweet place!
Thursday, January 19, 2012
Tuesday, January 17, 2012
Family Game Night
We had our first ever family game night last weekend. We played a memory matching game. Lily was most often the winner (!). I think its gonna become a favorite new evening activity. We played again tonight before bedtime. (Sorry for the poor quality pics!)
We'd clap for each other getting a match. Peter is mid-clap below. :)
Then they did individual "games"... toys that are away in the closet only for supervised play so that pieces don't get scattered everywhere! Lily did this butterfly (from Aunt Jane).
She sat on my lap and I got to look at those sweet hands!
Peter played with his drill set.
And replicated a pattern for the screws.
Video of Lily
I hope this works! My first video!
Before I left for Louisiana, I woke Lily up and videoed a 'hello' for Kari, Melissa, Della, and Luke ;)
LB is too cute! She sounds like a little parrot!
Good BYE 2011!
A few weeks ago, I spent a little time reflecting on 2011 and I am just now typing it up. It was quite the year. I wanted to have to these things documented in one place for the sake of remembering the craziness... That one day (even today!) we will praise our Father for where he has brought us from and that it could be an encouragement to someone else in the midst of a hard time or something similar. For me, it was a year marked by lots of hard circumstantial things but also by anxiety, depression, and grief. Praise the Lord for new seasons and years! 2012 already feels different. We know that He calls us to trust Him no matter what the future holds but we pray that its different than 2011.
2011
:: a year that was sobering and took away some of my naivety, a year of learning that anything is possible. It aged me!!
:: the heartache of just losing Charlie and Alvin. It leaves such grief, so I can hardly bear the grief & missing for Holly and Glenda. And yet I wouldn't have had it any other way than to walk closely with Holly. I read this recently and it sums it up well... I repeatedly remind myself that it is never "too soon" to be with Jesus, but it is always too soon to leave our loved ones. One does not cancel out the other. Both are simply true. May the deep grief be wrapped in certain hope that death will never have the last word.
:: the agony of taking my boy to VCU for the new onset of non-febrile seizures and poor coordination. Then having him worked up for what seemed like all neurological possibilities under the sun.... and one by one they were ruled out/checked off... brain tumor, anatomical anomaly, metabolic disease, known genetic conditions, each feeling like a forever wait and slow agony...waiting and then more waiting ... for some overnight and others that took WEEKS (read it slooooooowly, that's how it felt... slo mo). And then, the one that caused me the most anxiety was the work up for a Lysosomal Storage Disease. (what a nightmare! Oh, my heart, for the parents of a child with one of these... its too much!) We are so very thankful for God's mercy that all of those were negative and for the control of his seizures on Keppra. It gave me a new perspective on the life of people whose children really have something hard that they have to deal with health-wise. And it have me a new perspective as a nurse on the patient and family's experience. Ugh, the suffering, I hate it!
:: the pain of losing what we thought would be our 3rd child to miscarriage. And the ongoing grief of that lasting all year... esp after I felt a little more free to process it once Peter's health was less of our focus. And then the wait of not being able to move forward because of some ongoing genetic tests for all of us, which were thankfully normal. In the recent weeks (of 2012), I have felt such a freedom from this grief. And more of a thankfulness for what we have and ability to trust God's sovereignty over our family.
:: And it can't be overlooked that in 5 weeks, we went to
:: lots of therapy for Peter: occupational, physical, and speech. Wishing we didn't have to go, being thankful our insurance covered it, and hating the pain, suffering and trials we saw there of other children and their families.
:: High-Fiveing so many times over the blessing and provision of awesome insurance thru Mike's job. And MANY, MANY hours spent on the phone with our insurance company working out all of the benefits.
:: In our year of heartache, its been a season that Mike really enjoys his job... what a blessing!
:: Thankful for the gift of feeling like I have a clue (if only a small one) about healthcare & medical things from my time as a nurse... and knowing other people who know more!
:: The gift of friends, family and the body of Christ at our church. Grandparents and our small group carried us. From Joe's visit to talk with us and assure us from God's Word that Peter would go to Heaven should he leave us too early (I lost all reservations to ask anything when my boy was sick) to Blair and Susan sitting with us that Saturday morning over a Chick-Fil-A breakfast, and Blair giving me the bobby pin that was in her hair (it's the small things!). Dinners waiting for us (thank you, Joy!). Susan babysitting while her husband took time out of his day of doctorly responsibilities to be with us at the hospital and at doctors appointments. I don't care to go thru any of this again or ever walk thru the doors of VCU again but I am thankful for the people who loved us so well!
:: Oh, how we love Keppra and the seizure control it provides. Lord, may it continue to be so!
:: 2011 was the year that Lily grew up and the gap between her and Peter became so much smaller. She became a partner with him in all things childhood... esp the world of pretend. I love seeing them enjoy each other and the blessing of them being completely unaware of all the stresses that have been present in our grown up lives.
:: Seeing the faithfulness of God through my marriage. Thank you, God, for my Mike!
:: wrestling through my own struggle of how this is different than what I imagined... definitely the things mentioned above but also my own strength, perseverance, perspective is severely lacking! Not being who I wanted/want to be. Ugh!
:: And as last fun marker of 2011... FUN with the kids! We did have FUN too! Days at the pool, hearing all of the new words and phrases they are learning, cracking us up on the the things they pick up and remember, pretending together, hugs, laughs, etc, etc.
:: Verses of the year:
"Bless the Lord, O my soul, and forget not all His benefits" Psalm 103
Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.” John 11:4
Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?” John 11:40
2011
:: a year that was sobering and took away some of my naivety, a year of learning that anything is possible. It aged me!!
:: the heartache of just losing Charlie and Alvin. It leaves such grief, so I can hardly bear the grief & missing for Holly and Glenda. And yet I wouldn't have had it any other way than to walk closely with Holly. I read this recently and it sums it up well... I repeatedly remind myself that it is never "too soon" to be with Jesus, but it is always too soon to leave our loved ones. One does not cancel out the other. Both are simply true. May the deep grief be wrapped in certain hope that death will never have the last word.
:: the agony of taking my boy to VCU for the new onset of non-febrile seizures and poor coordination. Then having him worked up for what seemed like all neurological possibilities under the sun.... and one by one they were ruled out/checked off... brain tumor, anatomical anomaly, metabolic disease, known genetic conditions, each feeling like a forever wait and slow agony...waiting and then more waiting ... for some overnight and others that took WEEKS (read it slooooooowly, that's how it felt... slo mo). And then, the one that caused me the most anxiety was the work up for a Lysosomal Storage Disease. (what a nightmare! Oh, my heart, for the parents of a child with one of these... its too much!) We are so very thankful for God's mercy that all of those were negative and for the control of his seizures on Keppra. It gave me a new perspective on the life of people whose children really have something hard that they have to deal with health-wise. And it have me a new perspective as a nurse on the patient and family's experience. Ugh, the suffering, I hate it!
:: the pain of losing what we thought would be our 3rd child to miscarriage. And the ongoing grief of that lasting all year... esp after I felt a little more free to process it once Peter's health was less of our focus. And then the wait of not being able to move forward because of some ongoing genetic tests for all of us, which were thankfully normal. In the recent weeks (of 2012), I have felt such a freedom from this grief. And more of a thankfulness for what we have and ability to trust God's sovereignty over our family.
:: And it can't be overlooked that in 5 weeks, we went to
- the ER 4 times (one long weekend, we went 3 times in 4 days),
- had 4 hospitalizations,
- 2 surgeries,
- and one speeding ticket. All of it was enough for a lifetime!
:: lots of therapy for Peter: occupational, physical, and speech. Wishing we didn't have to go, being thankful our insurance covered it, and hating the pain, suffering and trials we saw there of other children and their families.
:: High-Fiveing so many times over the blessing and provision of awesome insurance thru Mike's job. And MANY, MANY hours spent on the phone with our insurance company working out all of the benefits.
:: In our year of heartache, its been a season that Mike really enjoys his job... what a blessing!
:: Thankful for the gift of feeling like I have a clue (if only a small one) about healthcare & medical things from my time as a nurse... and knowing other people who know more!
:: The gift of friends, family and the body of Christ at our church. Grandparents and our small group carried us. From Joe's visit to talk with us and assure us from God's Word that Peter would go to Heaven should he leave us too early (I lost all reservations to ask anything when my boy was sick) to Blair and Susan sitting with us that Saturday morning over a Chick-Fil-A breakfast, and Blair giving me the bobby pin that was in her hair (it's the small things!). Dinners waiting for us (thank you, Joy!). Susan babysitting while her husband took time out of his day of doctorly responsibilities to be with us at the hospital and at doctors appointments. I don't care to go thru any of this again or ever walk thru the doors of VCU again but I am thankful for the people who loved us so well!
:: Oh, how we love Keppra and the seizure control it provides. Lord, may it continue to be so!
:: 2011 was the year that Lily grew up and the gap between her and Peter became so much smaller. She became a partner with him in all things childhood... esp the world of pretend. I love seeing them enjoy each other and the blessing of them being completely unaware of all the stresses that have been present in our grown up lives.
:: Seeing the faithfulness of God through my marriage. Thank you, God, for my Mike!
:: wrestling through my own struggle of how this is different than what I imagined... definitely the things mentioned above but also my own strength, perseverance, perspective is severely lacking! Not being who I wanted/want to be. Ugh!
:: And as last fun marker of 2011... FUN with the kids! We did have FUN too! Days at the pool, hearing all of the new words and phrases they are learning, cracking us up on the the things they pick up and remember, pretending together, hugs, laughs, etc, etc.
:: Verses of the year:
"Bless the Lord, O my soul, and forget not all His benefits" Psalm 103
Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.” John 11:4
Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?” John 11:40
Wednesday, January 11, 2012
Christmas Gifts
Mike and Peter built the bus that Gram and Pop gave him!
Lily's has had fun lacing the animals while Peter is at OT/ST.
Tuesday, January 10, 2012
lately, in no particular order
-Last week was such a gift to ease back into the routine. This week is still a little slow w/o Wellspring yet.... nice! I'm headed to Louisiana this weekend to see two dear friends and meet two precious babes! YAY!
-Lily's "I love you" tends to sounds more like "I luf you" so I've said it like that back to her. So now she over enunciates "LUF" and she's realized it sounds like "I laugh you"... she thinks she's so cute... and she is!
-The money from the cash drawer has turned out to be the most annoying Cmas gift!! It may only stay around a little longer.
-Lily's been in her big girl bed and using the big girl potty (she used the "little potty" before)...
-Its been another "mature spell" for Peter. He hasn't complained much lately about the things he has to do, but he's been more cooperative. It is a much welcomed change! We had the time to do lots of one on one things last week as Lily napped much longer than him several days... speech words, play doh, coloring (he did his best coloring yet!), etc. It was FUN!
-I took him for a follow up visit to the ENT last week and on the way there, out of the blue, he said, "Thank you, Mommy, for taking me to the hospital." When asked by the doctor how he was doing, he said "I'm not breathing the right way" (cracks us up!)... wonder where he heard that. He was so cooperative with her and about medical stuff in general! It is SUCH a blessing!! He has a follow up sleep study later this month so you can pray with us for improved (or resolved!) apnea.
-He is SO friendly. He introduces himself to people everywhere we go. At the ENT office, he made a friend in the waiting room.
-Lily LOVES being a Mommy to Baby Audrey (the doll). She now claps her hands, holds them out to Baby Audrey and sorta whispers in her "sweet Mommy voice", "Come here, Baby Audrey. Come to Mommy." Baby Audrey needed a diaper change b/c she'd had a poo-poo... and she'd put her hand in it. "That is yucky." Oh, that's what happened when there was poo smeared on her crib rails and wall last week.
-Lily and Peter LOVE playing together. They especially love to drive things (no surprise!). Lily will tell Peter what she wants to go drive. So they'll head over to:
the couch with the end cushion pulled off (essential) to their FIRETRUCK.
the little blue chairs at their little table, side by side, to their TRACTOR.
to the living room couch, feet sticking under the arm, to their DUMP TRUCK.
Oh, the imagination of children. It does us all good.
-Lily's "I love you" tends to sounds more like "I luf you" so I've said it like that back to her. So now she over enunciates "LUF" and she's realized it sounds like "I laugh you"... she thinks she's so cute... and she is!
-The money from the cash drawer has turned out to be the most annoying Cmas gift!! It may only stay around a little longer.
-Lily's been in her big girl bed and using the big girl potty (she used the "little potty" before)...
(and this... I don't make any promises...)
but YAY, for soon being able to free up more space! The down side is earlier wake up. :(
-We got Peter a coat on clearance last winter for this winter. He started wearing it last week and noticed it has a "red dot" on one sleeve... its now his Buzz Lightyear button. He pushes it, "wings" come out, and he FLYS!-Its been another "mature spell" for Peter. He hasn't complained much lately about the things he has to do, but he's been more cooperative. It is a much welcomed change! We had the time to do lots of one on one things last week as Lily napped much longer than him several days... speech words, play doh, coloring (he did his best coloring yet!), etc. It was FUN!
 |
| Peter did the green, brown, blue, and red. I did the orange and peach on George's face. |
-He is SO friendly. He introduces himself to people everywhere we go. At the ENT office, he made a friend in the waiting room.
-Lily LOVES being a Mommy to Baby Audrey (the doll). She now claps her hands, holds them out to Baby Audrey and sorta whispers in her "sweet Mommy voice", "Come here, Baby Audrey. Come to Mommy." Baby Audrey needed a diaper change b/c she'd had a poo-poo... and she'd put her hand in it. "That is yucky." Oh, that's what happened when there was poo smeared on her crib rails and wall last week.
-Lily and Peter LOVE playing together. They especially love to drive things (no surprise!). Lily will tell Peter what she wants to go drive. So they'll head over to:
the couch with the end cushion pulled off (essential) to their FIRETRUCK.
the little blue chairs at their little table, side by side, to their TRACTOR.
to the living room couch, feet sticking under the arm, to their DUMP TRUCK.
Oh, the imagination of children. It does us all good.
 |
| The Crusty Dump Truck Driver ;) |
Tuesday, January 3, 2012
Sunday, January 1, 2012
Another tradition from last year that we made second annual this year was our get away to Williamsburg.
We headed out so the beauties could nap in the car.
After a quick trip to the outlets, we hit the pool! We stayed at a different (and better) place than last year. This pool had a "hot part" and a "cold part". We all enjoyed both!
After the pool was the part that sealed the deal for Mike and I that we'll be going back!
We ventured down to the lobby, past a gingerbread village...
we took Baby Audrey and her bag along...
to Happy Hour (free drinks and appetizers) YAY! We counted this as our NYE,
since that was the occasion last year too! Then we ordered pizza to eat in the room.
The kiddos got to sleep in the same bed!
(For the record, Peter still got in the bed with us mid way thru the night...for crying out loud, we are in the same room as you! So then we did a circus routine and I got in bed with Lily. Double beds are not made for 3.)
We enjoyed our yummy breakfast, another swim, then headed to Colonial Williamsburg. The obligatory locked up pics...
Peter was sorta done with all the walking involved and he really just wanted to play games with Mike. So we walked and walked to find a grassy area (to get him to the end of the road) so they kids could push Mike over! Oh, the joys!
We'd planned to go the the Army Transportation Museum after that. But for the second year in a row, when we got there, it was closed (even tho we called to double check the day before). So we just drove home. Peter was really disappointed! So Plan B was the Children's Museum. It was closed. So Plan C was Lily's favorite place that she tells us all the time that she wants to visit... Dog Wood Park.
(Lily has discovered pockets so wants to put her hands in them all the time. We might make a temporary wardrobe shift to pants since the cold weather is upon us. She also got some new cold weather kicks at the outlets that I think are so cute!)
Such a fun time together!!
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