Sophie Kate’s Journal

Hey everyone, I know you are all on pins and needles b/c you have not heard the latest about Wet Tots and mine and Sophie’s journey into wearing bathing suits in front of people all in the name of therapy I might remind you.  Well, our first official class will be this Tuesday and Sophie is just beside herself and I am behind myself or hope to be behind something.  Anyway, I am very excited to see how SK will react and what all they can do for her there.  

We are on a fact finding mission for some other therapy options for Sophie right now.  Please be in prayer for this.  We want to follow God’s plan for us and not get caught up in emotion or false hope.  Our hope lies in the One and Only True God, our hope does not lie in anything of this world, not men, not tests, not procedures.  Pray that we will keep our eyes on Jesus and that we will follow His direction and His will alone, not our will and our own desires.  When you are dealing with your children, as all of you know, you want to do everything you can for them.  Please pray that we will not be moved by the words of men or by the emotions of our heart, but that we will be moved only by the Holy Spirit stirring within us guiding us in the path that God has set out for us.  Pray that God will reveal His will to us in such a way that there is no question in our hearts or in our minds of what He would have us do.  Thank you for your diligence in prayer.

I really hate to keep reporting that feedings are in the pits but they still are.  Maybe I am putting too much emphasis on this b/c I am very discouraged and disappointed about all this.  I had envisioned after the surgery that our feedings would be much better than this, she was taking more by mouth before the surgery than she is now.  She was screaming and crying with every feeding so please do not hear what I am not saying.  I know with 100% certainty that she needed the surgery, she is definitely better b/c of it, I had just hoped and prayed so much that her bottle feedings would be so much better by now.  Please continue to pray for this area of our lives and the prayer may need to be that I am able to back off of this for a little while and not be so obsessed with it 24 hours a day b/c right now I am.  I am living and dying with almost every feeding and that is a lot of pressure to put on that precious baby girl.

We did our therapy with Sophie’s Occupational Therapist yesterday (Wed. April 2) which consisted mainly of working on different feeding techniques, this is why I am so obsessed with her feedings, b/c so is everyone else around me.  Anyway we are trying a new bottle and then are just continuing with some of her other therapies at home that I do with her each day.  She is holding her head up well, while laying on her tummy, and is able to turn and look from side to side while holding her head up.  That kind of strength is so encouraging and amazing, something that wonderful can only come from God.  Thank You, Jesus.

Sophie Kate did get to see 2 of her brothers play baseball Tuesday night.  She did pretty good, I will give her credit where credit is due, she did have to sit through 2 baseball games, which would put many of us girls in bad moods, she had definitely had enough by the end of the night.

Happy Birthday Baby Girl!  We are so blessed to have you in our lives.  God gives us the strength to face each morning and to get through each day.  Five months have come and gone and we have seen the evidence of the Hand of God upon you.  I pray He will never take His mighty healing hand off of you, that you will grow strong and that above everything else our God will receive all the glory for all the great things He has done.     

Hey everyone.  Wow, what a fast but fun weekend we had.  My sister Beth and her family along with my parents came for a visit this weekend.  This was the first time any of my sister’s family has gotten to see Sophie Kate so it was a very special time for all of us, it’s just never long enough.  Of course I’m sure if you ask them, after sleeping downstairs in the playroom on an air mattresses with their children, they’ll probably tell you two nights was plenty long enough.  Anyway we were so glad to have them here. 

Grey’s birthday party was a lot of fun.  All the kids had fun, it was earlier in the day before the rain came in so everybody got to play outside, which was great for the sanity of the adults.  A two year old is not a very gracious host though (as so many of you with two year olds know) so lots of minor fights broke out that went something like this: Cousin playing happily and nicely with any toy, Grey-MINE, Cousin-but I had it first or for the ones that couldn’t talk a look of is any grown up going to come help me, Grey-MINE as he then proceeds to take toy away from said cousin.  Needless to say both kids end up crying, but thankfully those things are always short lived and all parties seem to move on from it. 

I feel like Sophie Kate handled the weekend pretty good.  It was a lot of activity and stimulation for her and that kind of wore on her Saturday evening and night, but she came through the party pretty well.  Mornings and early afternoon is her best time.  My niece Emma Claire was so sweet with her and of course wanted to be involved in all things pertaining to baby care.  You can imagine the confusion in the house when we had the “real” Sophie Kate, then Emma Claire’s baby doll who she named “Sophie Kate”, and then we had “Sophie Kate’s baby”, which was a baby doll SK had been given for Christmas that Emma Claire had asked to play with too.  I never knew who was coming or going in the baby carrier all weekend long b/c every time I saw it there was a different baby in it, which I have to confess is a little unnerving when you are not used to seeing a baby and in this case thankfully a baby doll haphazardly thrown into the baby carrier.  It definitely catches you off guard and makes you look twice as you scream “Where is the “real” Sophie Kate?”  Anyway, she was just precious with SK and always made sure she had matching shoes on with each outfit.  One time she came and asked me for some socks for SK as my mom was getting Sophie dressed one morning.  So I gave Emma Claire the socks and she just stood there and looked at me and then said “And what shoes is she going to wear?”  So whether Sophie Kate was going out or not by golly she had her shoes on, so cute.  I haven’t even told Chad, but by the end of the weekend Emma Claire even had Grey taking care of the baby dolls with her.  I have the pictures to prove it, she had Grey putting socks on the baby dolls, wouldn’t his daddy be so proud.

No new news on the progress of Sophie’s feedings we are still struggling with that from feeding to feeding.  We are working hard on her therapy.  She is holding her head up very well.  Please continue to pray for her progress and also for our family time.  With Sophie’s feedings being so difficult right now we are basically back to pump feeding almost everytime, so getting out with her is very hard.  I feel like we are back to a split family where it is one of us with Sophie and then one of us with the boys.  God has always taken care of our family and I know that He will continue to see us through this, I just pray that it will not always have to be such a struggle. 

The cousins come together!

I told you I had proof…

We went for our Wet Tots evaluation and tour today.  What a beautiful facility they have out there at the Lakeshore Foundation, it is sooo nice ya’ll and that water, they were not kidding when they said it was like bath water, so warm.  They showed us some of the things they will be using with Sophie after she gets used to just being in the water that is, they said sometimes that takes some time.  I hope she will enjoy it and that it will be beneficial for her, cause this will be no easy task.  It is on the other end of town, of course, and offered on Mondays at 9:00 and Thursdays at 2:00 so perfect timing (ha ha) having to find places for almost all of my other children to go, no problem, huh? 

Our therapy sessions with Sophie’s Occupational Therapist got back underway this past Wed.   That was definitely a good thing since we had been away from her for about 6 weeks.  It was good to get back into all that.  We were mainly working on feedings and strengthening and as always we were sent home with plenty of homework.  Once again, no problem, I will now have something to do with all the spare time I have on my hands, but we will make time to do it, right Sophie?  Ya’ll didn’t hear that barely audible sigh did ya’ll and that rolling your eyes when you think I’m not looking.  Sister you need to get a better attitude about your therapy cause I got news for you, we’re doing it!

Lastly, we certainly could not end today’s post (Friday March 28) without a Happy Birthday wish to my baby boy Grey! He’s 2 today and we are doing it up right on Sat. with an all things Little Einsteins Birthday Blowout. Actually it’s not a blowout, poor thing his parties are always going to have to be scheduled in and amongst baseball games on opening weekend, but it really is all things Little Einsteins does that count?  That’s the life of the third born Grey, bless your heart.  Sophie, I’m not sure what your in store for.  Hope you all have some blessed family time this weekend.   

Hi everyone, I wanted to let ya’ll know about Sophie’s doctor visit today.  She weighs 11 pounds 3 ounces, is 24 inches long and her head circumference (which is the most important to me) is 14 1/4 inches.  This is an increase from the last measurement that was done, I don’t remember exactly what that was though, but I am so thankful and so thrilled.  Her doctor said that in many cases he sees the head growth start to level out and not really increase much more, so he was very pleased.  He said that her head growth is below the growth chart and is starting to lag behind but nevertheless it has not stopped growing completely and for that I send praises Heavenward!  It was a bit amusing as I was talking to the nurses today that with my other children at any point you could have asked me what they weighed and how long they were and I could have spouted out the information no problem.  With Sophie Kate however, I never know how long she is not at birth not now (I had to look on my cheat sheet from the doctor’s office to list it on the info above), sometimes I am not even sure of her weight, but that head growth buddy I can spout that out at any time, it is a vital statistic for her right now.

Her weight and her head growth were the high point of our visit today.  From time to time we have to discuss things with Sophie’s doctors that are at best unpleasant and difficult and this was one of those times.  You don’t necessarily know that it’s coming it just kind of happens over the course of the appointment.  The past two days have been very difficult emotionally and spiritually for me.  Sweet sweet people tell us how well they think we are handling all of this, I don’t really feel that way.  I am broken to pieces with tears just streaming as I write.  What you all see during those times is the strength God has given us, there is no other explanation for how I am even able to get to my knees in the morning. 

I say all of that to say this (I know I am being a big time downer today) even in the midst of how very sad and difficult these past two days have been, God has shown me in very tangible ways that He is still with us and in control of this situation.  Yesterday (Monday March 24) God showered us with 3 specific blessings: the first were some books that were ordered and sent to us, from people we don’t even know, on different therapy treatments we were thinking about for Sophie, the second was an offer from my mother-in-law and father-in-law to keep my two youngest so that I could go and watch my oldest in a practice game for his baseball team and the third was a very special gift from our church’s WEE center, which is where Jacob and Grey go to school. 

Today we were showered with even more, to set the scene I will tell ya’ll that I was pretty much a mess all day long today.  Well, I had hardly even come inside from our doctor’s visit when the phone rang, it was a friend who wanted to bring over an outfit she had bought for Sophie, the most precious dress and little coat (for next year) what a pick-me-up that was, it is always fun to get new clothes for Sophie.  Literally though, while I was on the phone with her another call beeped in and it was someone who wanted to bring us dinner.  I was like OK God I cannot even get a good cry in for You sending people over here trying to brighten my day and lift my spirits, really how is a girl supposed to get down and feel sad and pitiful with friends like this.  The day was topped out by two more friends, actually one was the same one who had brought the outfit earlier in the day (you are outdoing yourself today sister).  They wanted to take Cooper and Grey to dinner for me tonight so that I would be able to go to Jacob’s baseball game, this was his first game of the season.  What a gift that was, we took SK with us and she did really well, while we watched our middle son get two people out and score a home-run.  That was so much fun!  Baseball is about the only normal thing left in my life and while I know I will not be able to make all of the games for both boys, this was such a great night and I am so thankful for it. 

God allowed me to see all of these things as they happened for what they truly were, blessings from my Heavenly Father showing me that He is still there, that He cares so much about us and that He is still in control.  My life is so different now everything looks different, tastes different and feels different not necessarily all of it is bad and sad different it is just different and I am trying to find a new way of being.  Yes there is sadness but somehow in Christ and I cannot even explain it there is a comfort, a peace and I find that only in Him, only in His Word and only in His love.  Thank you for showing us His love in your words and your actions.   

Hey everyone, yesterday was a great Easter Sunday for our family, I hope it was for your family too.  We all made it to church together and I thought everything went as well as it possibly could when one is trying to get 4 children up, fed, dressed and photographed all before 9:00am.  Sophie was in church part of the time and in nursery part of the time, she did very well.  I was just about overcome with emotion sitting there in church with her.  She is such a special gift from God, day to day life is not easy but I know that she is here for a purpose.  I had prayed that she would feel good and would be able to go to church with all of us on Easter Sunday and it was such a sweet blessing to have her there with us.  It was a wonderful day being able to celebrate the Resurrection of our Lord not only together with our own family but also with our church family. 

A couple of things I want to share with ya’ll coming up this week.  First of all Tuesday (March 25) Sophie has a appt. with her Pediatrician not for anything specific just her 4 month old check up that we had to cancel earlier b/c we were in the hospital.  Please pray that he will see Sophie with God’s eyes.  All of the doctors that Sophie sees have been so diligent in their care for her and I know that is all b/c of God’s hand upon her.  So please pray that tomorrow her doctor will see anything and everything that he needs to see in order to care for her in the best way possible.  God has been so faithful in all of this.  The second thing is on Thursday, I am actually pretty excited about this one, we are going to the Lakeshore Foundation to be evaluated for a program there called Wet Tots.  It is water therapy for babies, I pray it will be very beneficial for Sophie.  I know what ya’ll are thinking and yes I have to get in the water with SK.  Well there is one problem with that, I don’t wear a bathing suit in front of people, but I will do ANYTHING for that child, so I guess I will be wearing a bathing suit in front of people.

Please continue to pray for God’s hand and direction to be upon us, that we will know the direction He wants us to go in concerning future therapy for Sophie.  There are so many things out there and it all seems very confusing right now.  I certainly don’t want to busy myself and herself so much so that I miss out on what God is trying to show us and do through these circumstances and believe me it is definitely possible to do that.  Also, pray for her feedings they are still not going well at all.  I really feel like we are at a stand still with this right now things are certainly not progressing in this area at all and I really don’t know what to do about it to help her.  We are having to put almost all of her feedings through her tube and I am very discouraged by this, so please lift this concern up during your prayer time.  Also please continue to pray for her complete healing, God is definitely in the miracle performing business!  Thanks ya’ll 

Sophie wore this the day she came home from the NICU, it finally fits, you can only imagine what it looked like on her 3 months ago.

The McManic kids Easter morning

Wow, the power of those words Resurrection Power that just says it all for me.  Just think, God uses the same Power today that He used to raise Jesus from the dead, with that kind of Power at work in our lives anything is possible, Amen?  I pray today and everyday that we are all remembering and meditating on what our Savior Jesus Christ endured for us, the suffering the unfathomable suffering that we cannot begin to understand as He endured the Cross.  The Perfect Sinless Son of God who took on our sin to save us from eternal separation from our God who loves us.  Such love is not known here on earth among us, we cannot love like He can, unconditional indescribable love and He gives it freely to us, Praise God for that.  Good Friday, how can it be good when we know this to be the day Jesus was crucified and died for our sins, it is good b/c God chose to do this ultimate act of love for us.  What a celebration 3 days later!  I pray you will be celebrating 3 days later, He’s Alive and we are forgiven!!!  Blessings to all of you this Resurrection weekend.         

Hey everyone, we are continuing to survive Spring Break here.  Actually survive is really not giving us enough credit, we are actually doing pretty good.  I was not sure how things would really go this week, having all of them here everyday by myself, but so far things have gone pretty well.  We only have one more day to get through and then daddy is going to be off Friday, yeah.  Actually I have no more days to get through by myself, I have help today too (Thanks, Erin). 

Sophie’s feedings are still not going well, she continues to only take 1/2 to 1 ounce by herself.  I have gotten on some of the message boards at the websites that I visit and this seems to be very common.  We have been given some great suggestions and advice by folks who have been through the exact same things that we are going through now.  So taking it slow and letting her go at her own pace seems to be the way to go, most people online are saying it takes 6 weeks to totally heal from this surgery, we’re only 2 1/2 weeks out.  Also her ear infection and the antibiotics could be affecting her appetite and stomach some too.  So please continue to pray for her in these areas. 

Our Spring Break saga of firsts for Sophie Kate continues.  Yesterday (Wed. March 19) we all loaded up and were somehow able to withstand the chaos that is Pump It Up.  Those of you that know about Pump It Up know that I am not exaggerating in the least, talk about sensory overload.  Anyway Sophie and I handled it very well I thought.  Grey on the other hand is a different story, all I really need to say is that the child went without his nap yesterday.  He actually did fine when we were at Pump It Up, he was obviously running on pure adrenaline.  I am not going to go into a lot of detail about what happened afterwards b/c the pictures below say it all, so funny but of course not funny at the time.  I should have heeded the warning signs with Grey when that same morning at the dentist office, at 10:00am in the rain I might add (what was I thinking, with all 4 children), he started crying when we opened the door to go in.  It really was one of those moments where all you could do was laugh b/c he was completely out of control as if they were coming for him right then to pull out every one of his teeth with rusty pliers.  The kicker to the whole thing which I proceeded to tell the entire waiting room of people who were already staring at us anyway was that Grey was not even the one being seen by the dentist that day, these appointments were only for Cooper and Jacob.  Oh, don’t ya’ll all just love those moments.  You know the ones when you are already dragging the children around that can walk and people are already looking at you thinking to themselves “what is she doing?” and then oh no she doesn’t, yes she does, she’s got one in the baby carrier too.  I just love the looks on peoples faces especially when they realize that we are all coming in to where they are, like in the waiting room yesterday morning, such a classic moment.  So as I was saying I should have heeded the warning signs that Grey was already throwing off that morning, but no we had planned on going to Pump It Up that day and by golly we were going, besides we had stayed home all day Tuesday and I was determined we were not doing that again, I had to get these children out of the house.  Sophie handled her first trip to Pump It Up just fine, she actually slept for most of it, although for the life of me I don’t know how.  

SK in one of her rare conscious moments at Pump It Up, look at those cheeks sister, I love it!

Grey having fun at Pump It Up, prior to the meltdown

Grey post meltdown, enough said

Sophie has had a string of good days and we are so thankful for them.  It all started on Saturday, then Sunday Sophie spent the day with her Grandma and Grandpa, which was really great for mama and daddy, b/c her brothers also spent the day there too.  Chad and I were actually able to get out and about town in a car not a minivan, wow that was really a strange feeling.  Then yesterday (Monday March 17) we all got out and went to the park with friends and ended up spending most of the day there.  Sophie did so good, I really wasn’t sure how all of that would work with her, but she really enjoyed it and it was such a nice day here.  Besides with it being Spring Break here I knew we couldn’t all just stay at home all week, I would have lost my mind.  I was so proud of Sophie, I think she really enjoyed being outside. 

Her feedings are not going very well, she is hardly taking anything at all from her bottle, maybe 1/2 to 1 ounce, we are putting the rest through her feeding tube.  I am really disappointed in this but we are continuing to work on it.  Please pray specifically for her feedings that she will start eating again on her own.  Her occupational therapist came to the house yesterday (Monday), Sophie did really good, she was very alert and aware and seemed to like all the therapy we did.  Please pray that she will continue to improve every day.

Sophie’s first day at the park. 

Hey everyone, Sophie is having a better day today (Sat. March 15) and therefore so is Sophie’s mama, b/c as goes SK’s mood so goes mama’s mood, just ask Sophie’s daddy, he knows all too well.  She is also still having some decent nights, she is only getting up one time at night now and we are certainly praying that that only gets better from here.  She is not quite up to where she needs to be with her feedings during the day so at times we are having to feed her through her feeding tube during the day as well as having to keep her on the continuous feeding pump at night, but we are still working toward our daytime goal.  Please continue to pray for her feedings and that she will be able to take everything we need her take through her bottle during the day. 

I realize that most of the posts recently have been pretty heavy, that is just the way things have been around here lately, but God our definitely has a sense of humor and thank-goodness we are still able to find some bits of humor in our everyday life.  When I was dressing Sophie this morning after her once a week bath (just kidding mom, heehee not really) I had a deja vu moment.  Whenever I dress Sophie in tops and bottoms even though they are the same size the bottoms are always too big.  Although she has almost grown out of her newborn clothes, the top and bottoms today just happen to be newborn size.  Well of course the top fits (actually it is almost too small) and the bottoms are too big, they just fall right off of her.  This happened a few weeks ago when one our friends (let’s just call her “Traci” for the sake of this post) was visiting us at the hospital.  I said you know Sophie really needs newborn tops and preemie bottoms for a truly custom fit and “Traci” said wouldn’t we all love that, to be a newborn top and a preemie bottom.  Amen sister!  Enjoy it now Sophie it won’t last forever, right?  She’s actually already experiencing that b/c now that she has her feeding tube she will be getting her nutrition one way or the other so whatever plan she had of keeping her weight in check is now out the window.  Although now you can really tell that she is starting to put on weight just by looking at her or as a friend of mine’s little girl says (hmm… we’ll call her Emily S.) “Sophie looks like she is gaining weight in her cheeks.” Isn’t that sooo funny and it’s the cheeks on her face people not her other set of cheeks.  That’s us grown up girls that gain weight in those cheeks, just kidding (no I’m not really).  I try to tell Sophie Kate that there is really no need to stay at this weight just so you can continue to fit into your cute clothes, b/c there are lots more cute clothes just waiting for you to grow into them, that will not be a problem. 

Thanks to all of ya’ll for being there for us in the bad times and also being there with us in the good times too.  Love ya’ll!