Sunday, June 27, 2010

Sleep Study Results

The sleep study went very well. I guess I should say that the sleep study results were good b/c the sleeping itself did not go so well. Miss Sassy woke up at 3:30am and never went back to sleep. I can't say that I blame her b/c it would have been awfully hard to sleep at all with all the "stuff" they had attached to her monitoring this and that. However, she did sleep from about 11:00 to 3:30 and they got everything they needed during that time.

The results were good. There is no obstruction in her airway while she is sleeping, there is no sleep apnea. Her O2 and CO2 levels are within normal ranges and she didn't have any seizures during the night either. All good stuff and we are so thankful for the positive report. SK's ENT, which is the doctor that ordered the study, will be very pleased with the results and I am sure we will be taking a wait and see approach concerning the surgery I mentioned a few posts back. Once again...good stuff.

We came home, crashed hard and our little girl has bounced back great over the weekend. She's in such a great place right now. I hear people talking about how quickly she is growing up, they can't believe she's 2 1/2 already and neither can I, but I wouldn't go back to those baby months even if I could nor do I miss them in the least. She is such a better member of the family than she was then, not that it was her fault, it certainly wasn't, it was just an extremely dark and difficult time in the life of our family.

She goes and does and gets along with just about anything we throw at her. She handles all the craziness that is her 3 brothers so well and I think it has helped to have that stimulation around her from an early age. She's happy, healthy and smiley and we are taking in each happy day and enjoying it with her.

Psalm 28:7 "The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song."

Thursday, June 24, 2010

Sleep Study

We are here, checked in and hooked up. How on earth this girl is gonna sleep tonight with all this stuff hooked up to her is beyond me, but they tell me she will. I will get to meet with one of the sleep study doctors before we leave, so I will have some info to share with y'all at some point over the weekend.

For now though, I bet they don't have a cuter patient in the sleep clinic tonight than this one...

this one...

or even this one...

Thanks for checking in on us.

Monday, June 21, 2010

Summer Fun

We are sooo enjoying ourselves this summer. I am going to try to show you with these pictures but I don't know if our fun comes through enough. What do you think?

And now the little diva herself...

I can hardly take those little sunglasses, they make my day every time I see them.

Oh boy, does she love watching those brothers...

SK in her new pool float...

Cooper perfecting his dive...

This boy just loves life and it shows in everything he does...

Grey...just showing off...

Who does she think she is?!?

Girlfriend knows she's something special...

SK's sleep study is this week, so we will be spending one night at Children's Hospital. I'm trying to psyche myself up for it. It's only one night...we've been through waaay worse. Hopefully we will get lots of helpful information from it. I don't expect to come back home w/any information. I'm sure it will be the same old "we'll send the results to your doctor" thing, but I will update towards the end of the week.

1 Thessalonians 3:9 "How can we thank God enough for you in return for all the joy we have in the presence of our God because of you?"

Friday, June 18, 2010

He and She

He and she...

He will do anything for she...

especially when she smiles...

He goes to work every morning and comes home to us every evening. When he comes home he seamlessly transitions into light saber battles, Nerf sword fights, video games and wrestling matches. He takes on feeding tubes, medicines, diapers and me.

He provides, teaches, coaches and most importantly loves...

He is who our boys want to be just like and he is who our daughter never wants to let go of...

Who gets to be looked at like that by her? He does.

Happy Father's Day to the most important man on earth to my children and me.

Monday, June 14, 2010

SK's Swallow Study Results

I purposefully left out the results of the swallow study SK had done last Thursday on the last post b/c...well...I had no results. Guess what, I have results now and I am extremely delighted and surprised at the results given what happened last Thursday.

I'll start at the beginning, SK's swallow study didn't go well. She took a few bites and then coughed it all up and then took maybe two more bites and then the swallow study came to an end b/c she aspirated her food. That day when the therapist talked to me right after the study was over, it began something like this, "Ummm...well...let me tell you about the positive things I saw this time," not really the results I was looking for.

The two therapists that were in there for SK's swallow study were therapists that we knew and that knew Sophie, so that was nice. They also knew how badly I wanted to be able to feed her over the summer, so I knew if there was any chance at all that they were definitely going to try to work it out. Well, we left there that day with an "I'll call you," it didn't look good. We were also given the Radiologist's results which was global swallowing dysfunction, double ouch.

Now, I have to say that we went into this test knowing that she would fail it and fail it she did, but that was not the reason it was done. We re-tested her to see if there had been any progress since we started the Vital Stim therapy last Spring and to see if I would be able to safely feed her over the summer. So I did not expect her to pass with flying colors but I was hoping for a little more than I left with.

Remember my wanting some scrap of good news out this about two posts ago...well, we got it! I am able to feed SK 5 bites of stage 2 baby food everyday!! I know this doesn't sound like much, we aren't trying to go for calories here. We are trying to go for learning, exercising and training those swallowing mechanisms and muscles. Y'all have to know there was some "shock and awe" in this house when that therapist called here and told me the good news.

The weekend went so well. SK did great with her bites of food. I know this is shocking to all of you who know me, but I have have been doing it two times a day instead of one...shhhh. I am so proud of her, it's amazing to see her learning this. I don't know where any of this will lead but for now I am feeding my baby girl bites of food and I am loving it!

Friday, June 11, 2010

SK's Week at VBS

We have wrapped up a week of Vacation Bible School around here. Sophie Kate had a great week. She loves to be active...going, doing and participating not to mention being loved on, fussed over and the center of attention.

I feel like I have earned the right to speak for my girl...I do it everyday with doctors, nurses, therapists, etc. I feel like in this picture she is screaming, "Hey, look at me!"

Love this...

This is not a very good picture of SK, but I included it in the post b/c SK's teachers told Mr. Chip before they handed SK to him to "be careful she's heavy," that cracked me up. These guys are members of Team Impact. They break baseball bats over their legs, run through and bust up huge blocks of ice and tell people about Jesus for a living...I think they're good with our little SK.

Sister, we are going to have to get you a pair of cowboy boots for fall. I am loving them on your "mini me."

Even though this was one snapshot of one day after VBS, please know that this was our girl each day after VBS...exhausted.

SK's VBS class...

Teachers, thank you for letting my girl see, feel, hear and experience the world around her this week. You all are a blessing.

Sunday, June 6, 2010

On the Horizon

There are a couple of things on the horizon for our girl...the first is another swallow study this Thursday. This a follow up to the Vital Stim therapy we had been doing for about the last 8 weeks of school. I guess this is to see if we are going to be able to safely feed her at home over the summer and to see if there has been any progress made since the previous study that was done in March.

So here we go again...I shouldn't put all my eggs in this basket, but to say that I will be disappointed if this doesn't go well is a huge understatement. How can I not be expecting something, just a little something after these 8 weeks of therapy? How do I reign in my hope and desire? I don't know how to do that. I don't know how to completely shut the door on her eating orally one day. Yes, I am hoping for some scrap of good news on Thursday.

The other thing coming up a little later in June will be SK's sleep study downtown at Children's. This is being done in an effort to gain a little more insight into SK's "noisy breathing" for lack of a better word. SK will be monitored for lots of things while she sleeps...things like O2 saturation, brain activity and breathing patterns to name a few. This is just to gather more information...does she need her tonsils and adenoids removed or does she not? Does she need some excess tissue removed from her trachea or does she not? The issue is that those things are interfering with SK's breathing. The question it bad enough that she needs surgical intervention and do the benefits outweigh the risk?

We will once again take each step one day at a time. There is no benefit that can come from worrying over things that I have no control over. I do get scared and nervous b/c I want something to work out for make things a little bit easier for her. I would just like for something to be nothing. Does that make sense? I would just like for something that we go in for to turn out to be absolutely nothing...what a relief that would be.

Well, back to the present. This week we have Vacation Bible School at our church. We are all looking forward to it. Sophie Kate had such a special experience last year. It was really the first time that she did anything like that. She had the sweetest teachers and some great experiences. I am back to teaching this year, so I will gather my group and we will all go together. It's another tiny piece of "normal" and I use that term very loosely coming back.

Thanks for checking in on us and please keep our girl in your prayers in the upcoming weeks.

Friday, June 4, 2010

Brother and Sister

He will never know anything different...

He thinks all babies are fed through a feeding pump. He even knows how to turn it on and off. He really doesn't know any different. He still thinks SK is a baby. It's really sweet when he sees commercials on TV for "girl stuff," b/c he tells me "when Sophie Kate gets bigger we will have to get that for her." He's precious with her.

He'll say things to me like "when Sophie Kate gets bigger I'm going to let her ride my bike." I love the innocence and hope he still possesses as a child. I wish I still had some of it.

He tells me when he likes her dress or he'll say, "Sophie Kate looks cute today." He always wants her to sit with him which is absolutely adorable to me. He sits beside her and shares his covers with her so she will be warm.

Nothing he ever finds out about her will ever change how he feels about her. His heart is so tender towards her. It's a beautiful thing...those two together.

Romans 12:9-10 "Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in brotherly love. Honor one another above yourselves."