Sophie Kate’s Journal

Hey everyone.  I am finally glad to report that Sophie Kate seems to be doing better.  Her cough and congestion is much better.  You can’t really hear her anymore when she is breathing and that is a good thing.  You really shouldn’t be able to hear a person breathing from across the room.   She has finished the Rocephin shots but I still have no idea what is going on with her ear at this point.  We will go back sometime next week to get that checked out.

So I was cleaning out all the boys closets on Sunday, you know changing out the summer clothes for fall clothes.  I was getting all the hand-me-down clothes out for everybody, even Cooper is getting some hand-me-down clothes from friends that are older than him.  Well, you know who that leaves getting ALL new clothes for fall and winter don’t you, no not me (I know that’s what ya’ll were thinking) of course it is the little princess.  This is all pretty funny to me b/c I still cannot get over all of the different clothing options for infant girls.  It can be an overwhelming and confusing adventure from time to time.  It’s the accessories that get me, you can’t just buy an outfit for a little girl and be done.  There are bloomers and tights and hair-bows, Oh my!  Don’t get me wrong it’s all fun, we just need a separate category in the budget now for SK and I don’t mean the one we already have budgeted for her medical expenses.

The festivities are kicking off this weekend starting the extravaganza that will be Sophie Kate’s first birthday.  We are having her family party this Saturday.  She doesn’t get the day completely to herself though, her party has to be scheduled in and amongst her oldest brother’s flag football game.  She does have to remember that she is one of four so her birthday start time had to be pushed back by 1/2 an hour.  I told her yesterday so that maybe she could be over it by Saturday.  I’ve heard scary stories from friends about the drama and attitude that can surround these girls and SK pretty much has the drama down to a perfected science.

I have been planning this party for some time now and just this week have started buying and ordering things for the party.  Surprisingly to myself I am actually very excited about her party.  I really didn’t know how I would feel, honestly I was quite nervous about how I would feel.  Could I be happpy, would I be excited, could I celebrate in some kind of upbeat sort of way?  Thanks be to God for lifting my soul and allowing me to enjoy this week and hopefully this weekend as it was intended to be.  Most of my family and Chad’s family are going to be coming in to town this weekend and we are really looking forward to seeing everyone and spending time with them.

By the way, SK has rolled over four times this week.  If she keeps this up it’s going to get to the point where it’s not that big of a deal to her anymore, it’s just second nature, I love it!

Hope ya’ll have a great weekend and if any of ya’ll see SK this weekend just know that she will be getting her party on! 

Hey everyone.  I took Sophie back to the doctor again today.  I just didn’t feel like all of this congestion was clearing up and was fearful that at some point it might move into her lungs, we’re going on like 2 1/2 weeks with this now.  Come to find out that her right ear infection is still really bad.  This second antibiotic has not helped either.  So now we go to Rocephin shots.  Rocephin is an antibiotic that is stronger than any of the other ones we had been using.  She will get a series of three shots (today, Saturday and Monday) and then her ear will be rechecked.  If it is still not healed then we will be referred to an ENT (ear, nose and throat doctor) to have tubes put in her ears. 

This is familiar territory for us and probably for some of you too who have had children who have had to have tubes put in their ears due to chronic ear infections, etc.  We went through this with Jacob, he had to have tubes put in his ears twice.  At this point I just want what is best for SK.  If ear infections are going to be something she is going to have a problem with (we have already had 3 over a 6 month period) then I would rather this be taken care of the sooner the better.  This is certainly not the end of the world considering what we have already been through. 

I am getting the cart before the horse a bit here though.  First, we have to get through the rest of these shots and then see if her ear infection clears up.  Also we have been given a new prescription to try and get some of this gunkiness out of her chest.  So hopefully that will work and we can get her over this whole respiratory thang (you have to pronounce that with a heavy twang for it to be said properly).  By the way, my spell checker says that gunkiness is not a word and it wants to correct it for me, but I won’t let b/c it is a word in my world and I know that ya’ll all know what it means, it comes from the root word gunky, right? 

Lastly, a few of you have asked me about RSV and how that might pertain to SK and I finally got a chance to discuss this in some detail with her doctor today.  For those that may not know, RSV is a respiratory virus that effects the lungs and airway.  Anyone can get RSV and get over it no problem, however it can be quite serious in premature babies.  Sophie Kate does qualify according to our insurance for the RSV vaccination called Synagis.  So we will be getting home health nurses to come out and administer that to Sophie in the upcoming months, it is also a series of several shots I am not sure how many.  Praise God that we have another line of defense for all of this respiratory junk that will be getting more and more serious as the fall and winter come on.  I am so thankful for this powerful connection that I have with Sophie Kate.  Please hear me correctly, I am not bragging on it I am thankful to God for it.  He always gives me the wisdom and presence of mind I need to seek medical care for her when she most needs it.  It is just amazing.  I thank Him for the way He is watching over her.  Please continue to pray for Sophie’s healing.

We have been promised a beautiful fall weekend here, cool fall temperatures which means great football weather.  Hope ya’ll enjoy your weekend.   

Well here is a different sort of post than ya’ll have been getting out of me lately.  I had an encounter at the Chick today (Mon. Oct. 13) that was positively and deliberately ordained by God.  Yes, ya’ll heard me correctly “The Chick,” you know that it is the only place people seem to go when all their kids are out of school.  We thought we were going to avoid the madness b/c it was almost 1:30 when we got there, but alas, it was still slammed, but that is not where I am going with this story. 

I’m not going to go into all the details b/c #1 I am still trying to process it all myself and #2 I really don’t think I could do it justice right now.  What I will say is that I met a mother there who has a five year child that is exactly like Sophie Kate.  Isn’t that something, that we would meet up at the Chick on a Monday afternoon on a random day in October?  Also, she is a follower of Jesus Christ.  God ordained indeed!!  We probably talked nonstop for almost two hours, Misty, Stacy ya’ll were there, am I lying?  My friends I am so sorry, I didn’t say two words to ya’ll. 

This new friend has been going through all of this longer than we have since her child is five and she had lots of good advice and encouragement to give and also an “I know exactly how you feel and what you are going through” kind of understanding.  It was amazing.  God was all over that and once again provided what I needed exactly when I needed it.  Wow!

At this point what I have taken from this encounter is what I want to share with ya’ll.  I’m sure there will be more to come, but for now from this encounter I feel like I have heard a word from God.  I have not heard a real live audible word, but I know I do have a real live relationship with a real live and actively working God!

God has shown me through this sweet mother what I have to be thankful for.  May God bless that family, their child has quite a bit more going on than Sophie Kate like constant sickness, bouts with pneumonia pretty much they are so consumed with respiratory illnesses that they can’t even concentrate on therapy for the constant hospital stays.  Please pray for this child during the upcoming “sick season.”

So now to the point of all my rambling, the things I am thankful for concerning Sophie.  I am thankful that Sophie sleeps through the night so that we can all sleep through the night.  I am thankful that Sophie Kate doesn’t not have to be suctioned out 24 hours a day.  I am thankful that Sophie Kate has not had any seizures.  I am thankful that she only has to take one medication one time a day.  I am thankful that Sophie is able to swallow some and that she is able to eat a little bit of rice cereal and fruit every day.  I am thankful that she has rolled over 6 times.  I am thankful that Sophie Kate can move her arms and legs.  I am thankful that she can hear and that she can see some things.  I am thankful that she can cry and I am so blessed and thankful that she can give us those precious smiles.  

So there you have it a positive post b/c I know it has been a while, thanks for hanging in there with me.  I can also honestly say that I truly feel thankful in my heart for all of those things, they are not just words to me.  I feel a lifting in my spirit just to say them out loud and to see them written down for myself.  Lastly, I am thankful for Sophie’s life.  I have come to the realization, thanks to some of my friends and from the Holy Spirit doing a work in me, that if I did not have Sophie in my life, if she had not lived, then I would have given anything to have her here and to be able to take care of her in anyway that I could.

I am by no means where I would like to be in dealing with all this, it is such a painful process, but I do feel like I am aware (thanks Roger) of how I am feeling.  Thanks be to the Almighty One that I am aware when he is actively at work and moving in my life.  

“Devote yourselves to prayer being watchful and thankful.”  Colossians 4:2

Who would have imagined all of this coming out of lunch at the Chick, God really does work in mysterious ways, doesn’t He?

Hey everyone.  Everything is starting to settle back down here and is beginning to resemble what we have come to know as normal for the past 11 months.  Sophie Kate seems to be coming out of her funk and is now acting more like herself, some of her sweet smiles have slowly been returning today (Fri. Oct. 10).  We are tired but we are recovering. 

Sophie was actually able to get back to some of her therapy yesterday and today, much to her displeasure.  We haven’t done any therapy for almost a week and I can really tell it.  She is awfully stiff.  We have definitely got to get back into our routine.  Sorry sweetie. 

We did get out to the park for a little while today.  It was good to get out, b/c Children’s Hospital and doctors appointments don’t count as “getting out.”  Grey was cracking us all up.  He kept coming over and taking my shoes off and then went running off with them and he just thought that that was hilarious.  At least he didn’t put them on while we were at the park, b/c that is what he does with them at home.  Should I be concerned about this sudden interest in women’s shoes?  Anyway, it is a really nice day here today and I think we all enjoyed our time out.

I wanted to leave ya’ll with a few new pictures, this was of course prior to our recent sickness when SK was actually feeling like and participating in therapy.  She is sitting in her bumbo, which is a rare moment in and of itself b/c she hates the bumbo, and she is looking at the book “Brown Bear, Brown Bear.”

The next shots are of SK the first time she sat in her high chair.  We are always looking for new spots where she can sit and play or where she can just sit and be a part of the family.  This is a great spot for her to sit with us during dinner, so that everyone can start seeing her as a member of the family that can participate and be involved.  I love it!

So it turned out then that everyone wanted to have their picture made with Sophie Kate.

Cooper and Sophie Kate

 Jacob and Sophie Kate 

Wow, does he ever love her, can’t you just see it all over his face?  What a heart this one has!

As I said, everyone wanted a picture with Sophie Kate.

Grey and Sophie Kate

By the way, SK rolled over 2 times today!  That brings her lifetime rollovers to 6 ( if anyone but me were counting)!!

Hope you all have a great weekend!

We went to the pediatrician today (Wed. Oct. 8th) and found out some interesting things.  Sophie Kate’s ear infection is raging, the antibiotics that she had been on have not done anything to help things.  The doctor said it is red and bulging and should be quite painful to her.  So that may explain a lot of her out of character fussiness and irritability over the past few days.  Also, the doctor heard some wheezing in her lungs and felt like this stuff has moved some into her chest.  Overall, her lungs sounded good they just noted some wheezing.

We were sent home this time with a new antibiotic for her ear infection and then a machine to administer breathing treatments at home for her.  My thoughts on all of this is that she is definitely better than she was on Sunday when she was admitted to Children’s, but not any better than yesterday evening when we came home, just about the same.  SK did have another good night last night, so we were all able to get some much needed rest. 

My mom has been so kind to come a help me for a few days and that has been such a blessing just to have another set of hands around here.  Sophie Kate is really requiring a lot out of us these days as well as the other 3 that need our attention too.  Please continue to pray for Sophie to get better and better everyday.  She just isn’t my smiley (is that a word?) happy baby these days.

Yeah, we’re home.  We came home about 7:30 last night, with the promise that we would take Sophie to see her pediatrician either today (Tues.) or tomorrow. 

Sophie Kate had the most restful, peaceful night.  I am so thankful for that, she really needed it and so did the rest of us.  I wasn’t sure what kind of night we were going to have, but as some of you said “A bad night at home is way better than a bad night at the hospital.”  I totally agree.  I really think she was so glad to be home and to be in her own bed.  She rested and slept so well, no awful crying, no choking episodes and very few coughing fits.  She is still quite congested so we will see what today holds, but at least we get to spend today at home!

Thank ya’ll for caring and praying for us.

Well, we had pretty rough night here last night.  Sophie Kate decided that she wasn’t going to sleep any longer than 1:30 and that would be a.m. so of course neither did I.  Poor thing she was coughing and sneezing, choking and gagging and all that gross stuff and she just never could sleep for any amount of time.  She actually seemed a lot better this morning and thank goodness her lungs still remain clear.  This afternoon though she seemed to go downhill a bit.  Lots of the aforementioned gross things as well as crying real tears.  As many of you know, crying real tears means “I’m really hurting here” in Sophie language, she saves those for pretty extreme circumstances.  Seeing those tears run down her face made me just ache all over for her. 

So where do we stand now?  Well, we still might get to come home tonight.  As it has been all day, they just want to watch her for a couple more hours.  They have a “couple of more hours” me to death today.  As far as I’m concerned we’ve been waiting to go home since 9:oo this morning, but I do appreciate the diligence they have all shown here.  They have really been on top of things concerning her lungs and her airway and everything.  When we do finally get out of here we will be going home on some new meds but they are only temporary, just for the next two weeks and we will be taking a suctioning machine home as well.  The doctors feel like to get her over this she will need some additional suctioning of her nose and mouth over the next few days and they certainly didn’t want us to have to stay just for that reason and neither do we.  So another new piece of equipment but whatever it takes, right?

It’s now all up to SK, isn’t that always the case with her.  Hopefully my next post will be from home, but that will have to come tomorrow b/c even if we do get to leave tonight it won’t be until after 7:00pm.  I really want to sleep in my own bed tonight, but even more than that I want SK to sleep in her own bed and me in a separate room in my own bed.  You get no sleep sharing a room with that girl. 

Thanks for you faithfulness in prayer.  I will pass along more information when I have it. 

Hey everyone.  It is true that Sophie Kate was admitted to Children’s this morning (Sunday Oct. 5), due to difficulty breathing b/c of an upper respiratory infection, a virus and a right ear infection.  Well, the right ear infection really doesn’t have anything to do with anything but nevertheless she has one of those too. 

She’s been coughing a bit since Thursday, but no fever, nothing seemed to be getting any worse, she was pretty much acting like she normally does.  Saturday we noticed she was coughing and sneezing more and had a few choking episodes and then she had a real rough time Saturday night.  She was coughing and sneezing to the point that she couldn’t sleep, she was crying and choking really bad and all of those things that you hate to see your children go through.  Early this morning then is when we noticed that she was really having difficulty breathing and we could feel all that stuff down in her lungs and in her chest when she was breathing.

So that is when we called her pediatrician and were hoping for maybe a trip to an after hours clinic, a breathing treatment and an antibiotic and then a trip home.  Of course nothing can ever be that simple with SK, they thought it would be best for her to come downtown to the Children’s ER and now here we sit.  On the bright side, her chest xray was clear so one of our biggest fears which was pneumonia has now been ruled out. 

She has received some breathing treatments, steroids and antibiotics since she has been here and they are also monitoring her oxygen saturation which will be our biggest indicator if she starts having difficulty breathing again also the breathing treatments seemed to have helped her some.  They have told us that their biggest concern is her airway, it is very constricted due to the uppper respiratory infection and that is what is making it so difficult for her to breathe.

I am not sure at this point what the plan is for tomorrow.  We were told if she was better we would probably get to go home.  However, tonight is not getting off to a very good start.  She is acting the same way she did last night with lots of crying, coughing and irritability, pretty much just unconsolable.  So we are going to get some pain meds in here and see if those can’t help to get things under control.

Please pray that we can get this respiratory stuff under control, this is one of my fears concerning her.  Please pray that she is much much better tomorrow and that we can come home, but only if it is safe to.  We want to come home sooo bad but not to the detriment of her health of course. 

Thanks so much to our family and friends who offered to and did drop everything to help us today no questions asked.  We could not do this without ya’ll.  I thank God for you.  I will update when I have more information.

Hey everyone.  It’s another Happy Birthday day for Sophie Kate.  Our baby girl is 11 months old today (Friday, Oct. 3).  Wow, one more month and we will be at the one year mark, and what a one year it has been, but I am certainly not going to go into that now. 

SK has had a pretty good week.  She has had a couple of very smiley days.  She used to only share her smiles with us in the morning but now we are getting smiles out of her all the way up until early afternoon and her smiles speak a 1,000 words to my heart.

We have really been enjoying the fall days here.  God has blessed us with beautiful weather this week.  Fall is definitely my favorite time of the year: the leaves changing, the cooler temperatures, the smell in air and of course football.  SK has loved sitting out on our back deck every evening in her swing.  She has always loved being outside. 

I’m still trying to come out of the funk I have been in for about 3 weeks now.  Thanks to our family and friends for getting us out of the house some and having us over to visit, that always lifts our spirits.  Thanks to those who have kept SK for me this week, you are very much appreciated. 

Specific prayer requests right now include SK staying healthy through the fast approaching “sick season,” gaining better head control, getting stronger through her neck and trunk, and being able to sit up unassissted.  We also continue to pray for an overall healing of her brain, brain growth and continued positive gains through her therapy.  Thank ya’ll for your faithfulness in praying for our little girl. 

It’s been so fun looking (and buying) some of the new fall clothes that are out for SK.  Sorry boys but buying jeans, long sleeve t-shirts, and tennis shoes really pales in comparison to dresses with tights OR darling little shirts with leggings OR cute little flared pants AND the shoes, I can’t forget the precious little shoes.  Let’s see there’s the white keds, the comfy pink and chocolate brown pair and the sweet little black patent pair (not sure on spelling) that are going to be out of this world cute with her Christmas dresses.  So ya’ll all just watch out b/c she will be all decked out and will be coming to a baseball field or football field near you.  Bless her heart the only places she goes and can show herself off at are her brothers ball games.  We don’t show off our clothes at therapy, that’s where we show off what we can do and we certainly don’t show off ourselves at church b/c that just sounds really bad.  So we show off ourselves at brother’s ball games b/c she probably still thinks it’s all about her even on the ball field.   

And yes, ya’ll should know her well enough by now to know she already has her Christmas dresses.

Happy Birthday baby girl!

Hey everyone.  I was just checking in with Sophie Kate’s online friends tonight (Sun. Sept. 28) b/c I had been a bit behind due to our very busy weekend when I found out that another one of her friends has passed away.  This precious angel was just a few months younger than SK and had spent way too much of his short life in the hospital.  I am just devastated for this family.  What does this all mean?   What is this all for?  All of this hurt, pain, heartache and suffering that our precious babies and families have to go through, I don’t get it, AT ALL!!

Is this what Sophie is headed for months or years down the road?  Or it might just be years and years of pain and suffering b/c of the way her brain is causing her body to jerk and pull.  I heard this just this week and right now I can’t remember where I was (and I have heard this all of my life) that God doesn’t make mistakes, He makes everyone special just as He designs.  Really?  He made Sophie to hurt and be in pain and very possibly never utter a single word or ever understand who her parents are?  And we are supposed to live the rest of our lives this way?  How can we possibly?  Why is this happening to our babies? 

I cannot make sense of this b/c it does not make sense!  These children have so much to deal with in their lives that I am not going to even begin to list or describe, but it is just one thing after another, constant struggle, constant battle.  Ya’ll I cannot imaging hurting any more than I hurt over Sophie pretty much daily but I guess if I did not have God’s love and comfort in my life then it would be worse.  I am able to get out of bed each morning b/c of the strength He gives me.  I have no strength of my own left.  Are there no words for such a situation and time as this?  No words, only prayer.  Please remember this family in your prayers this week and in the upcoming weeks.   

God of heaven and earth, be real to this family right now.  This precious angel is in Your presence at this very moment and we rejoice in that and we know that he is no longer hurting.   Give Your peace and Your comfort to the loved ones he left behind, God hold them close to You and surround them with Your love.  All of this in the name of Jesus, “that at the name of Jesus every knee should bow, in heaven and on earth and under the earth, and every tongue confess that Jesus Christ is Lord, to the glory of God the Father.” Philippians 2:10.