Sophie Kate’s Journal

Wow, what an exhausting week this has been. I am developing a very bad Starbucks habit here. For the coffee addicts out there, this place is paradise. There is a Starbucks literally on every corner, no joke. I am up really late at night and I guess my 5:30pm Grande Carmel Macchiato is mostly to blame for that. Yes, I am stopping for HOT coffee at 5:30pm in 90+ degree heat. One of the times last week when I stopped by they asked me if I wanted that hot or cold. Ummm, duh, hot of course.

Sophie has had a pretty good week. We have had our ups and downs as usual, but on the whole she has done pretty well with the treatments this week. As of today (Thursday June 19), her ears are actually looking a little bit better. So we are doing something right, that was good news to hear. We have now completed 26 treatments, only 14 left!

We had a girl’s night out tonight. It was my sister-in-law Aimee, a friend of her’s, Sophie Kate and me, and we all went shopping in Atlanta. Lots of fun, of course, all we came home with was clothes for our kids, but it was so great to get out and do something other than therapy. SK is going to have to be broken in to the whole shopping thing a little bit slower. She had “had it” with all of us by the time we were finished, but she hung in there pretty good through most of it. I blame myself, she hasn’t been properly trained yet in the art of shopping. We’ve just spent too much time in the hospital and not enough time at the mall. Can I get an Amen girls?

Can’t wait to see my boys this weekend, I miss them sooo much that it actually hurts. It has been so hard to be away from them and that goes for all my boys.

Have good weekend, looking forward to seeing everyone.

Hey everyone, good news. Sophie actually had a good day today! Her treatments went well today. Her right ear is still red, but we took things very slow today and she tolerated everything just fine. Yes, this does mean that we are in the chamber longer, we are now up to 1 hour and 40 minutes inside the chamber. So, obviously my wish has also come true, b/c I am just lovin’ that(not really). Anyway, one more treatment to go tomorrow morning and then we get to come home for the weekend, YEAH!!

On a little bit different note, the chamber is making my hair go straight, it’s really weird. I have naturally curly hair anyway, but I also put stuff on it so that it doesn’t get frizzy. Well, I noticed on Monday and Tuesday of this week that even when I put the gel in my hair it wasn’t staying curly, so on Wednesday I didn’t do anything to it and it dried almost completely straight. It is freaking me out. I used to have straight hair, before I had kids. Then I started having babies and my hair freaked out and went curly, don’t ask there are a lot of things I could say here. So now it’s freaking out again and going back straight. It will be interesting to see if it goes back to curly after the treatments are over. Anyway, too much talk about my hair, sorry guys.

After tomorrow’s treatment, we will have completed 18 treatments, only 22 more to go. Thanks for all your prayers.

Week 2 of treatments are not going so well. Sophie Kate has been pretty upset both Monday and Tuesday. Today(Wed. June 11) was some better, but when they checked her ears after the afternoon treatment, they saw that her ears were red, which means that her ears are being irritated by the pressure of the oxygen treatments. So, they are going to recheck them in the morning before our first treatment and if they are still red then we are just going to take it real slow in the chamber tomorrow(as far as pressurizing it) to see how she reacts. So that could possibly mean MORE time in the chamber for us, I can’t tell ya’ll how much I am looking forward to that.  Hopefully, her ears will look fine in the morning and then I guess we would proceed as we normally do. In any case, she is crying more than normal this evening, so I am concerned that her ears are bothering her.

I have Cooper here with me this week, which has been great for me, I missed them sooo much last week.  The challenge has been having a not so good week with SK and still managing to make sure Cooper has a good time and to be all happy and upbeat for him.  Please pray for us tomorrow and the rest of this week.  We have had a difficult 1/2 of the week, hopefully it will end better than it has started.  I will let ya’ll know how it goes tomorrow.

Ok, we are here and we have had 4 days worth of treatments (8 treatments total) and I have to say that Sophie Kate is handling things pretty well. The first 2 days were rough she cried a lot during the treatments, but Wed. and Thurs. have been much better. I think she is getting more accustomed to how it feels in there, she’s doing better with everything concerning the treatments. We are trying different positions for SK, although there really isn’t any wiggle room no matter what position you are in. Ya’ll, no joke, it is super tight in there, there really isn’t any room, but I won’t go on talking about it b/c I could talk myself right into freaking out about it. Physically, everything is fine with Sophie’s ears, they are checking her ears after every treatment and the inside of her ears look fine. So I am just trying to get her to swallow more when the chamber is being pressurized, it’s like trying to clear your ears when you are taking off in an airplane. She is doing a great job at swallowing the formula that I am putting in her mouth too by the way.

This is the hyperbaric chamber that we are getting in twice a day for an hour and a half each time. For those of you out there that this matters to, it is only 27 inches in diameter, to everyone else out there who that means nothing to, including myself, that means tiny.

This is me and Sophie Kate before they shut the vault door on us.

Sophie Kate in one of her peaceful moments during treatment, see Sophie we’re happy when we’re breathing 100% oxygen, not mad.

Please pray that she gets better and better at this, that she can tolerate it better and be content and happy in there, or just quiet. She doesn’t have to even be happy, quiet will do just fine. We are certainly looking forward to coming home tomorrow (Friday June 6), one week down, three more to go. Thanks for all of your prayers.

Couldn’t let the day go by without a shout out to my favorite girl, Happy Birthday sweet baby, seven months old!

Sophie Kate has been spending some time in the exersaucer lately.  It gives her a new experience with different toys and also gives her a chance to put some supported weight on her feet.  She actually pushes herself up in it and will stand with some weight on her feet for short periods of time.  She is really enjoying it, she even smiles a little bit when she stands up, I think she’s proud of herself.  I am certainly very proud of her. 

We are still working on sitting up and doing lots of tummy time.  Sophie does a great job holding her head up, don’t lay that girl down, she wants to be up and looking around.  She still needs assistance when sitting up, but she is definitely trying.  She was also very close to rolling over (from front to back) the other day so we are working on that now too.

We are getting in our last week of physical therapy and occupational therapy for a while.  We leave for Atlanta on Sunday with our first Hyperbaric Oxygen Treatment starting Monday (June 2) morning.  Please be in prayer for this.  We will be having 2 treatments a day for 4-5 weeks, (40 treatments total).  I am excited, nervous, anxious and hopeful all rolled into one.  Please pray that God will use this in a positive way in her life.  Pray that she will tolerate the treatments well and that she will be happy and content during the treatments, a lot of this depends on her reaction to things, as does pretty much everything around here, if Sophie ain’t happy ain’t nobody happy.  Isn’t that something, the smallest one has all the power!

I tried to capture some of her smiles if you look very closely you might can see them…

Thank you all for your continued prayer and support.  This is going to be a life long journey for us and so many of our family and friends have committed to be in this with us.  It is not an easy committment but one that many have taken on without hesitation.  Thanks especially to our parents for keeping our boys while Sophie and I are in Atlanta and while Chad is at work.  We know they will be well loved and well taken care of.  Thanks also to Chad’s sister, Aimee and her husband, Brad for giving Sophie and I a place to stay while in Atlanta, sooo much better (and cheaper) than a hotel.  Thanks, guys. 

I will be doing updates from Atlanta and letting ya’ll know how things are going with the treatments and we will be coming home on the weekends.  Please pray for Sophie Kate during this time, we know that this is not a cure for her, our hope certainly does not lie with this treatment.  We don’t know exactly what these treatments will do for Sophie.  What we do know though, is that God has led us every step of the way so far and we also feel that God has led us to these treatments.  Our hope is in Him and we will not waver in that, He is in control and we give Him all the glory!  

Just thought I’d share some recent family pictures with ya’ll…

We’re so proud of our graduate.  Way to go Jacob!

My sweet Sophie Kate

Sophie loves her baby

Grey swinging his blanket at the park

Cooper’s Baptism

Jacob’s Baptism

Boys, your daddy and I are so proud of your decision to make Jesus the Lord of your life.  It is the most important decision of your life, more important than what college you will go to, who you will marry and what you will be when you grow up.  You boys have gotten it right, God will now lead you in all of these other areas as you continue to follow Him and seek Him with all your heart.  We love you so much!

Have a fun Memorial Day weekend everyone, enjoy your families!

Sorry about the website everyone, we’ve been on them all day to fix it. Anyway, we saw Sophie Kate’s doctor today (May 21) and had the upper GI done. Everything is fine with the surgery, it is completely intact and functioning as it is supposed to be, HUGE answer to prayer! There are a couple of theories as to why some of the formula is forcing its way back up when it really isn’t supposed to, but I won’t bore you with all that. The result is that Sophie is going back on her reflux medication, in hopes of settling things down in the stomach and that we have got a new feeding plan, just tweaking things a bit so that she doesn’t get too much formula on her stomach at one time.

There is talk of having to go back in and tighten up the valve that they made during her surgery, but we have several lines of defense to go through, medication wise, before we get to a second surgery.

Definitely a praise that everything is intact and nothing has to be done right now, surgery wise. The doctor talked like we have a 50/50 chance here with the medication working versus having to go back in and do another surgery. I thought to myself, thank goodness my God is not bound by your statistics or any of the other doctors statistics for that matter. He’ll see to this I know He will.

A sweet friend of mine sent me a note this week and I wanted to share something she wrote. I just love it…”Sorrow looks back, worry looks around, but hope looks up.”

Thank you all for your prayers, please keep them coming.

We are going to see Sophie Kate’s surgeon tomorrow morning(May 21) at 8:00am.  Over the past 2 weeks Sophie has started throwing up her formula, it started out just here and there, but now has progressed to several times a day.  The surgery she had in March was supposed to have stopped this from happening.  There seems to be some concern that something could be wrong with the surgery.  It seems to me like her reflux is back she is crying like she did before she had the surgery, painful crying into the night and wee hours of the morning like she used to.  It is very discouraging, we thought things were going so well since her surgery.  She is having an upper GI done tomorrow morning and then we will see the doctor after that.

Please be in prayer today and tomorrow for her and for her doctors.  I will update when I can.  Thanks guys.

Big news guys this Wednesday (May 14) Sophie Kate smiled for the first time!  She even did it 3 different times so I know that it wasn’t just a fluke.  They were deliberate, engaging, purposeful smiles.  I wish I could have caught them on camera, although I personally don’t need a picture of them, I will never forget them, but I do wish I could have shared them with those who weren’t there.  We were at Sophie’s Occupational Therapist and we had both just commented that Sophie had a very pleasant look on her face and then Sally said “Is that a smile I see?” and I said “Is it or am I just imaging it?”  It was such a sweet moment and one that I had been waiting for for some time knowing in the back of my mind that it might never happen.  For 6 months she has hurt and cried and been in such pain, just to know that she can experience joy and happiness and times where she is not in pain and is not hurting and also that she can then show that means the world to me.  This is such a postive step for her. 

We have since seen a couple of other smiles so I know that this is only the beginning for my sweet Sophie.  Hope, God has certainly renewed our hope, not that we had lost it altogether, but sometimes you just need a boost, you know?  God knew, He always knows what we need just when we need it.  Thank you, God for this dear sweet blessing.