Sophie Kate’s Journal

Hey everyone.  We are home from getting Sophie’s ear tubes put in.  Everything went well, it took a lot longer than it did when Jacob had his tubes put in, but then I wouldn’t have expected anything less from Sophie.  She had some trouble breathing once the surgery was over while she was in recovery so we had to stay for a little while longer but thankfully not overnight. 

Her ENT doctor told us that she had a lot of fluid behind her ears so the tubes were definitely needed.  As far as her airway goes, he did check all of that out and found some things that might be contributing to her being a noisy breather, but b/c none of these things are causing her any problems, he said there is nothing that he would do about that at this time.  He told us these things were very mild, so that was good to hear. 

Now, she just needs time to heal, she is certainly not a happy camper, but I can’t say that I really blame her either.  Sweet baby, it’s so hard to feel so helpless when it comes to your kids.  I want to do something to help her, but there is not a lot I can do besides hold her and love her and we are doing plenty of that here. 

This we can handle.  I have to say I’m most thankful that it’s not last year, that to me sums up a lot, thank you Jesus that it’s not last year.  We can get through this, I’m not sure we could get through another last year.

Thank you all for thinking of us, praying for Sophie Kate and helping us out today.  Hope you all have a blessed Thanksgiving. 

I got a call Friday from the nurses at Children’s Hospital.  Sophie Kate’s procedures will be done sometime between 7:00 and  8:00 Tuesday morning (Nov. 25).  We have to be there at 6:00, yes 6:00am, I don’t even know what time that means we will have to get up.  Poor Sophie though, I have to turn her food off at midnight.  Thanks for remembering us in your prayers.

Hey everyone.  This week has been pretty good in the life of my newest one year old.  Since Sophie Kate is finally feeling better, we were able to get back to wet tots this week.  She did really good working on balance in the water, she was standing really well with the support of the water around her.  She was able to work a lot on trunk control and holding herself up straight. 

Sophie Kate is still not able to sit independently so this continues to be our main focus right now, this is critical for her.  We work on it everyday.  She is to the point where she can sit for about 30 seconds by herself, of course this is up from her previous record of sitting by herself for 0 seconds, so I guess this can be seen as an improvement.  The sitting progress is just very slow right now.

On Tuesday November 25 Sophie will be having tubes put in her ears and will be having another procedure called a laryngoscope done.  I do not mean to overlook this procedure by saying that it is minor considering what she has already been through, but I do feel as though she needs the tubes and it is going to be very beneficial to her.  Having said that, I will now say that she will have to be put to sleep for this and we are certainly not taking that lightly and neither is the staff downtown at Children’s.  I have already been contacted by the anesthesia team and asked a bunch of question about Miss Priss so I really feel like they are on top of things on their end too.  Please keep us in your prayers on Tuesday, I haven’t gotten an official time yet, all I know is that it will be done early, they are done by age and from what I have gathered so far SK is the youngest one scheduled for our doctor, so it will probably be way earlier than any of us are used to. 

One of the things that I am particularly excited about is a possible increase in SK’s sense of balance.  Keeping fluid constantly behind your ears can throw off your center of gravity, so I am hopeful that after she gets these tubes in that her balance improves and maybe we can see some significant progress in this whole sitting unassisted thing.  Also, sounds will not be muffled so much for her, she will hopefully be able to hear better and more clearly which certainly can’t be a bad thing when one is learning to process sound.  So this procedure is not just going to help out our constant ear infection problem, but it could turn out to be an all around good thing for many areas of Sophie’s life.  This is my prayer.

We have noticed an improvement lately in Sophie Kate’s eye contact and focus.  She can really gaze meaningfully at us now and just seems more aware of her surroundings.  She is aware of when her brothers are around and surprisingly I think she likes them being around, just kidding.  They are very stimulating for her, there is not a dull moment when they are around.  Her gazes mean so much to me, it is like she is really seeing and taking in the world around her.  Thank You God for the small improvements we are seeing in her, we know they are only by Your hand.  

I will update ya’ll closer to Tuesday when I have more information.  Have a great weekend!    

Now that all of Sophie Kate’s parties are behind us and we seem to be recovering from all the excitement of turning one, I can take a moment and catch ya’ll up on what has been going on behind the scenes.  Last Friday, we found out that Sophie has another ear infection, yeah the count is up to 4 now, so that is the magic number for getting to see the ENT (ear, nose and throat doctor).

Sophie Kate saw him on Wed. (Nov. 11), and no surprise to us, told us that Sophie needed tubes put in her ears.  She still had the infection in her right ear and also had fluid behind her left ear.  As I have said before, Jacob also had to have tubes put in his ears and this was his same problem, this fluid behind the ears constantly whether or not there was an ear infection.  Well, it affected Jacob’s hearing and speech development, so we certainly want to be on top of this with Sophie Kate.  She doesn’t need things to be any more difficult on her than they already are. 

Sophie’s surgery is scheduled for Tues. Nov. 25.  The doctor is also going to do a laryngoscope, which means he is just going to be taking a look at her airway, making sure that everything looks ok there.  Yes, that would be two days before Thanksgiving, so hopefully everything will go well and she will be back to her smiling self that same day.  They will be doing her procedure downtown at Children’s and have given us very good odds of going home that same day, we were told there is a small chance we may have to stay overnight for various reasons that I won’t bore ya’ll with now.  I am only thinking good thoughts, though.  I am not even taking a bag with us that morning, so take that!

I have to share another encounter with ya’ll just b/c I think it is so neat.  I met with one of the nurse practitioners that works with our ENT doctor and of course over our conversation of her getting to know SK, she told me that she too has a daughter with cp and that she is 12 years old.  We exchanged email addresses and talked about different therapies that each other had tried and some of the triumphs and setbacks that both of our daughters have had.  It was a great conversation and she was just precious.  In fact we talked so long that the doctor was actually waiting to come in, I love that, but truth be known I would have rather continued talking to her.  Conversation just erupts and barriers fall when you are talking to someone who knows exactly what you are going through. 

I personally have not been ready to go out and join support groups and meet these parents and see these children.  I don’t want to be a part of this group and I do not want to see the future.  I absolutely know that I am not ready for that right now.  It has been really neat though to see how God has slowly trickled them into my life.  First was the nurse I met that night at Children’s South Afterhours Clinic, whose daughter had just gotten a gtube (the same feeding tube that SK has now), I still talk to her.  Second, was the group of girls I met at the beach, remember, one of them has a special needs child.  We talked a lot in that short time.  She lives right here in Homewood.  Then there was the girl I met at “The Chick” whose son has exactly the same things going on as Sophie and now this nurse at the doctor’s office.  I have learned so many different things from them, they have each shown me different perspectives for looking at things and different ways to cope and deal with life everyday.  Praise God for these meetings, they are so clearly His hands at work here, I am blown away. 

Wow, after listing all those people that I’ve met, it seems like I am growing a little group of people with special needs children around me, you know I am totally against that as I have stated earlier (hee hee not really), but I wouldn’t trade meeting any of them for anything.  Some people would call those meetings or encounters random or coincidence, but I believe they were divinely appointed meetings that God arranged just for us.  Whew, I’m glad I wasn’t late! 

Sophie Kate has to be officially one now doesn’t she?  She had a second party for herself on Friday night (Nov. 7) with some friends from church.  It was very special to be able to share this with them and we really appreciate everyone that came out to celebrate with us.  SK was in a good mood pretty much most of the evening, which is really good for her.  The 6-9pm hours can be quite tricky for her, you just never know what kind of mood she might be in.  Everything went well though and everyone seemed to enjoy themselves. Along with our family ya’ll have been such a huge support for us over the past year.  Ya’ll have loved us dearly over the past year and we are so thankful for all of you. 

Some pictures that I wanted to share from SK’s party this weekend…

Aren’t these darling?  I didn’t make them so I can say that.  Thanks to my friend Krysti for these precious little cupcakes.   

This was Sophie about midway through her party.  She was wondering why no one would take her home and put her in her bed.  Chad’s sister Renee smocked this dress for Sophie Kate for her birthday, it’s just beautiful.

Oh my goodness, have ya’ll ever seen anything so precious?  Our friend L stopped by to wish SK a “Happy Birthday.”

Our clean up crew, we put those boys to work.

This week has been really good for us.  Thanks to everyone who has understood and helped us get through this emotional time.  My breakdowns were fewer than even I would have thought.  God has certainly placed a joy in our hearts and the boys have been really excited for SK to turn one.  It has been difficult remembering the events from last year but God is giving us new memories.  Happier times from a year ago that I pray our boys will remember and grow from.  Thanks to everyone who has loved us and celebrated Sophie turning one with us.    

Today, Monday November 3, 2008 Sophie Kate turns one! 

Our sweet baby girl,

     Nothing could have prepared us for the turn our lives were about to take on this day last year.  Your birthday, a day that should have been filled with anticipation, excitement and joy quickly turned into tears, fear and desperation.  You clung to life for several days as we continued to hear your doctors tell us “she could still live or die.”  No one knew what God had in store for you. 

I remember the first time I held you, you were five days old and we had already been given the devastating news of the damage done to your precious little brain.  I remember telling you that you were perfectly and wonderfully made by God, that would become harder for me to come to terms with as your first year progressed.  I remember your daddy telling you during one of the days we spent with you in the NICU after we had been told that you may not be able to hear that you would hear the Word of God as he read verse after verse from his Bible to you.

You have touched and changed our lives in countless ways and even now we are still working out all of our feelings and hurts, but we are changed nonetheless.  We have experienced love on a deeper level, not just with you but also with your brothers and with our Savior.  You have given us a new set of priorities and have shown us what truly matters in this life.  Only God could take these circumstances and make something good out of it and Praise Him, He has done and is doing just that.  Glory and Honor be to our God, He is bigger than our circumstances, He is so much bigger than we can imagine.   

Baby girl, you are so loved.  Your brother Jacob is just crazy about you, your oldest brother Cooper wants to protect you and your brother Grey helps us take care of you.  You are going to develop such compassion in them.  You have not yet uttered a single word but your smiles tell us everything we will ever need to hear.  You are surrounded by family, friends, and a community that adores you and has accepted you in their lives unconditionally and we thank God for them. 

You are a daughter, a sister, a granddaughter, a niece, a cousin and a friend but most importantly you are a daughter of the Most High King.  As much as we would like to think of you as ours you are really His and we will love you and we will care for you and we will follow His will for the rest of our lives.  We are here for His glory, you are here for His glory.  You are not a tragedy, you are not an accident you are a daughter of the King!

“>