Sunday, December 25, 2011

Baby's First Christmas

Baby's First Christmas!

We had a hard time getting a decent pic of all the cousins together.  The girls all had matching cute!  This is the best pic I got though! 

Family pic.

 As I took Waverly in later in the day to change her out of her poofy Christmas dress I realized she was awake and happy and the light was perfect for a photo op.  I couldn't choose which pic was best, so here are all of them! 

 One last Christmas-y outfit pic of a very chubby-looking girl!

Friday, December 23, 2011

Christmas Tree

We enjoyed going out to cut down our Christmas tree for the first time this year!  We've talked about doing it before, but the kids have always been too small, etc.  But this year we went for it.  We had fun finding just the right tree and cutting it down.  And yes, it's important to wear a pink boa when you go pick out a tree. 

 The big kids found their own "trees" to drag back to the car as well.  Such big helpers! 

 Then we came back and decorated the tree.  I love these pictures and how Waverly was a part of "helping'! 

 Every year, after the tree is decorated, we turn off all the lights in the house, turn on all the Christmas lights, put on Christmas music, and eat ice cream as we sit and look at our beautiful work. 

Thursday, December 22, 2011

Heart Thoughts

This Christmas season has been hard for me.  Lately I've been dealing with a lot of fear again.  Every time I turn around, I hear of someone else being sick.  Often it's people we've been around.  And I freeze, and my stomach churns, gripped with the "what ifs".  I question if we are doing the right thing by being out as much and seeing people like we do.  I mean, we try to be smart and are very cautious to not be around people who have the slightest hint of not being well, and ask people to wash their hands and use sanitizer, but we are still exposed.  And I can only expect so much from my three-year-old and almost-five-year-old.  I feel so bad when I get upset with them for not washing their hands before touching Waverly, or for being in her face, or for eating or drinking after other kids, etc.  But it's not fair.  They are, after all, kids (and quite young ones at that!).

But the fear is there.  And it's more than just fear of germs and that first big sickness.  It's fear about the future.  Because it's likely at some point that one big sickness will be "THE" one.  I can't imagine what that will be like.  Nor do I want to.

I am afraid of things changing, and not being prepared.  I want life to be easy and consistent for my family.  For dinner to be prepared, the house to be clean, for mommy to be the one to be doing the most caring for the kids.  And if and when sickness happens, all that will change in an instant.

I have been anxious about Christmas day approaching, literally wishing away the time to Christmas day, not because I am so excited, but because it will mean we made it through and that we're all healthy and able to enjoy the day.  Of any day, we all want Christmas to be perfect.  But as I'm slowly realizing, it's just one more thing that I think I can control by having the perfect gifts, food, decorations, etc., but really can't.

I hate not being in control.

But that's one of the greatest lies that life will hand you, that you ever had any control to begin with.

I feel guilty that I place so much importance on perfection, preparation, and control.  Somehow I believe the lie that if everything is perfect and good for the kids, that they will be happy, stable, well behaved, and will have a good life. 

But the truth is that I can't protect them. 

You'd think I'd know that, as I wasn't able to protect Waverly from her condition.  There was nothing that I did or didn't do to cause her to be born like this.  It was out of my control.  And it happened.

Things happen all the time that are beyond our control.  But that doesn't change the truth of who God is.  And the truth is that if and when things do happen that are hard and beyond our control and not ideal, that He is big enough to handle it and get us through, and that no matter what, He is good, so good.  

And as we celebrate this Christmas season, I keep thinking of a song I heard on the radio a while back.  For the life of me I can't find what song it is or who sings it or even the actual lyrics, but the line that caused tears to well in my eyes went something like this:

"Someday this baby boy will make all sad things untrue."

So even as we celebrate His coming all those years ago as a baby, we look for His coming again, where all things will be made new, and He will indeed make all sad things untrue. 

Wednesday, December 21, 2011

Endocrinology appointment

Today Waverly had an appointment with an endocrinologist at UVA as a follow-up from her discontinuation of the prednisone.  It's part of her being in the study as well.  They wanted to do tests on her to make sure her body has resumed its own production of steroids after being on such a high dose for so long with the prednisone.  They drew blood for a baseline, then gave her ACTH to see how her body would react to being stressed, then 30 minutes later drew blood again to see what her levels were.  The doctor said he was pleased with how her body responded, although the levels were a bit on the low end.  So now we have a prescription for hydrocortisol (I believe).  If she gets sick, then we are to give it to her to help boost her body to fight off the virus/infection/etc.  We'll do that for the next year.  By that time, she should be back to where she produces enough on her own that she won't need it.  We are also supposed to take her to the ER if she is more than just a little sick and we can't get seen right away so she can get the medicine intravenously. 

Sunday, December 18, 2011

Meeting Santa!

Waverly was finally able to meet Santa for the first time this afternoon at the Sink family Christmas dinner! She didn't want to wake up at first but finally opened her eyes for the occasion!  Look at the rolls on her arm in the pictures!

Friday, December 9, 2011

Heart Thoughts-Rambling

So, I recognize that I haven't done any Heart Thoughts posts for a while (the last one was in October!).  To be honest, I have had lots of heart thoughts, but just haven't been able to get them all together in the form of a blog post.  I write things all the time in my head, but by the time I get to sit down to try to write, I just don't have the time, energy, or mental clarity.  I don't want to sound depressing, but I also want to be real.  I want to communicate what life is really like, at least mostly, so that when you see our smiling faces and cute dressed kids, you know there are still hard things in the background, and when you see our tired faces and ragged kids, you know there are blessings in the background as well.  So here are some ramblings of what's been on my mind.

We've been doing ok.  We have good days and bad days.  I still struggle when people comment on how well Waverly is doing.  Yes, she's doing wonderfully, considering what could be.  Sometimes (oftentimes) I have to choose to focus on what they see as good (she's growing, seizures have stopped, she's able to taste some foods, her smile has returned) instead of on the darker side of reality (um, her brain isn't fully formed for one (!), she eats through a feeding tube, the seizures could return any time, she can't roll over or sit up or play purposefully with toys, etc.).

Someone from our nursing agency came out yesterday to do a regularly scheduled home visit.  She brought with her one of the office personnel, because they are wanting to get them out into the client's homes to see real faces with names, who they are servicing, etc.  I am glad they are doing that, but it was also a little hard knowing I was on "that" end of it, the poor family with the sick baby and two older yet still small children to care for as well.  The haggard mom who needs help with her high needs, terminal kid.  See the mess?  See the handful of a three-year-old?  See the circles under her eyes?  This is who we help.  That's the end I was on.  

I've had a hard time with the Christmas season being here.  I keep wondering if this will be her one and only experience with Christmas, or how many she does have with us.  Again, the wondering and sadness don't accomplish anything, so I have to choose not to dwell on that, but the thoughts still happen, and it's hard.  It's hard seeing baby toys in the store and not knowing what to get for my baby, who won't play with those toys.

Today the kids went off to school, and I didn't even see them.  I was in bed because I was just so tired.  (I only slept 4 hours the previous night.)  I didn't get to check their backpacks, kiss them goodbye, help them with their coats.  I have no idea what K's hair looks like.  And I feel bad.  Because I bet most of the kids who went to school this morning had moms that saw them off.  

But there are blessings too.  So many blessings.  The friends and family in our lives that give us so much help and support.  The ladies in my Bible study who blessed me with gift cards, just for me, to communicate I'm not in this alone.  The nurse that we have here every day during the week, giving such good care for our baby, and me a breather and the ability to rest or spend time with the big kids.  Another Christmas season to celebrate, surrounded by family and friends, gifts to give and gifts to receive, celebrating our Lord and watching it come alive and real for our children as they grow older and understand more.  A husband who was available and willing to get up with the kids, get them fed, dressed, and drive them to school so that I could catch up on some much needed sleep.  A warm home and bed to sleep in.  Medical care for Waverly (even if it means tons of appointments!).

There are also little blessings that are not to be overlooked every day as well.  If you open your eyes to them, they are everywhere.  The way the grass sparkles with the frost on every blade.  The twinkle of the Christmas lights.  The way Waverly wiggles her little toes when she's awake and happy.  The smell of coffee in the morning.  My little man's sweet, tight hugs.  My growing girl sitting on my lap to read books yesterday.  My husband's strong hands.  God's grace to wake up this morning, a new day.  All blessings.

Thursday, December 8, 2011

7 Months Old!

Today Waverly is 7 months old!  Our little girl is growing and growing (Can you tell by the pictures?!?)!!!  Now that we're past Thanksgiving, we've been pulling out some holiday outfits.  So cute!

 One big accomplishment this month was feeding her by mouth!  She's not getting little tastes of food on the spoon, and loving it!  So far she's had bananas, sweet potato, ice cream, icing (at her 1/2 birthday party), and chocolate creme brulee (on Thanksgiving).  As you can tell, we've added a few fun things in there!  
 Waverly got to have her first Thanksgiving this past month.

 She also enjoyed another date with her man Ryan.  (Ryan is 4 years old and has Miller-Dieker Syndrome like Waverly.)
 We had fun at the UVA vs. Virginia Tech game the Saturday after Thanksgiving (although UVA played a horrible game!).  The weather was actually pretty warm, so we decided to go and had just planned on me leaving with her once the sun went down and it got too cool for her to be outside.  However, we had a surprise!  We were so blessed to be able to spend the second half of the game in a suite with my cousin Diana (who's sweet husband switched tickets with us so that we could be there out of the cold).  The rest of the family was jealous that we were able to go up to a suite, since they've been attending games since the 1980's and had never gotten to be in a suite yet!  I guess you get special privileges when you're special! 
 A cute Wahoo!
 Our BIG news of this month is that our girl is BACK!  Her smile and talking have returned.  She came back to us the week of Thanksgiving...what a gift!  We love seeing her precious smiles after missing them for a month.  We hope the seizures will leave her alone and let her "stay" with us now. 
She is very interactive again with people, and loves for people to talk to her and just be near her.  She's also pretty content laying on her playmat, in the swing, or in her carseat as well.  She's really a pretty easy baby in that she's not too fussy.  She still loves to be cuddled and held, but will let you know when she's had enough and just wants to lay by herself.  She's been growing, and is now 14.5 pounds!  Today is also the last dose of her steroids, so we may see the puffiness start to go down some.  She's still at about the 5th percentile on all the growth charts, but her weight for height is at about the 90th percentile!  Chunker!  She wears mostly 3-6 month clothes, although is still in some 0-3 month pants (she's got a tiny waist, and pants tend to fall off of her!), and can wear some 6-9 month shirts.  Her arms seem to be kind of short too, so we often have to roll up the sleeves on her shirts and sleepers.  As far as sleeping, she still has an awake period in the middle of the night, sometime between 2 and 6.  Sometimes it takes her a while to settle back down to sleep.  If it's any time before 5a.m., I usually give her melatonin to help her settle back down (otherwise, she can be awake for several hours).  She also seems to like it when I put music on my ipod for her and lay it beside her head.  Alison Krauss is her favorite.   :)  She's had a cough for several weeks now, but we've continued to monitor her closely, and other than that, she's had no symptoms, so we think it's just her clearing her throat from mucous or something.  I think I've started to notice some "pretend" coughing too to get attention.  Smart girl!  We have noticed her wrists turning in more lately, so we are in the process of ordering her splints for her hands, wrists, and arms to help with that.  We are so grateful for our sweet girl, and for how well she's been doing.  As we enter the winter and cold months, please continue to pray for her health, that her body would be strong against all the germs out there.

Last Day of 'Roids!

Today is Waverly's last day of the Prednisone dose in treatment of Infantile Spasms.  We are so pleased with how well it's worked for her!  She hasn't had any seizures at all (IS or other type) since October 31st!  We are so happy to have our girl back, too, smiley and talkative!  Please pray with us that the seizures, especially the Infantile Spasm type, will stay away.  Her neurologist said that 30-40% of the time, the IS will return, usually within a month.  The longer amount of time they stay away, the better the outlook is that they won't return.  So, there is a chance they could come back, even within the month.  If that happens, we already have a plan in place of a new medication to start to give her body a break from the steroids.  But of course, we'd rather them just not come back so we don't have to go that route.  If we do need to start a new medication, it's called vigabatrin.  We are a little concerned about it because it can cause vision loss, although supposedly just in the peripheral vision.  However, we still would not like her to lose even the peripheral vision, so we'd rather not have to use that medication.   Thanks so much for your prayers for our girl.  Can you believe how chubby the steroids have made her?!? 

Sunday, December 4, 2011

First Foods!

On November 17th, Waverly got her first taste of food, bananas!  The speech pathologist was over for a session, and asked if we wanted to try baby food with her.  I didn't have any on hand, but did have some bananas, so I pureed them real quick and we got to it.  She really enjoyed it!  Since then she's also had chocolate creme brulee (see Thanksgiving post) and sweet potato.  She LOVES "eating" (even if it is just a few dips of baby food on the spoon), and she seems to do really well with it, much better than she handles the bottle when we try it.  With the bottle she seems to choke and sputter a lot more, and although she is vigorous when she is sucking the milk down, it's just not quite as pleasurable seeming as it is when she gets the food on the spoon.  The speech pathologist agrees, and so we may try thickened liquids on the spoon some instead of the bottle.  (Of course, I may have to do one more little taste from the bottle as a last time, just to savor it [and cry, I'm sure!]). The big kids are really excited when she eats too, and love to get in on the action!  We'll try a few more foods this week and see what she likes.  It's so funny to see her eat.  Everyone in our family loves food, and she totally takes after the family in that way!  It's fun to see her personality come out like that.