Sophie Kate’s Journal

Sophie Kate had her six month checkup with her pediatrician last Friday (May 10). She weighed 14 pounds 8 ounces and was 26 inches long, that is a great increase for her. The most important increase though was her head circumference it went from 14 1/2 to 14 3/4 inches. I know you may be thinking a quarter of an inch isn’t really that much, but for someone who was told it really wouldn’t happen, it’s HUGE! Thank you Jesus, we are so happy for that increase. It is a huge boost for us.

It was a good visit, everything went pretty well. Sophie will be seeing a pediatric opthamologist (sorry about the spelling) in July. That will be a very important trip for us. I am really not up for going into the “why” of that right now, so please please be in prayer for this appointment.

We are still busy with lots of therapy appointments during the week, PT, OT, and wet tots. They are all still going well and Sophie is getting lots of stimulation from them as well as from the normal activity from the house. Did I just say “normal?” What I meant to say was abnormal, out of control, loud to the point of not stimulating at all but rather annoying and on my last nerve kind of activity, yep that about sums it up. Sophie Kate really does know when her brothers come into the room, of course how could you not, but she does try and turn her head so that she can see them, it is really sweet. It’s not just with me and Chad anymore, it’s like she is really getting to know them too.

Lastly, June is fast approaching, which means summer to most people, but here it means the start of Sophie’s oxygen treatments in Atlanta. She will be receiving 40 treatments, 2 per day for 4 weeks. Please pray diligently for this. There are lots of things that I could list concerning this treatment, but first and foremost I ask that ya’ll pray for God’s hand to be upon Sophie during this time. We do not want to embark upon anything on our own. We will not place our hope in anything but our God.

Please continue to pray for Sophie’s healing and her development. She is working really hard right now on pushing up with her arms and lifting her chest off the ground when lying on her tummy, rolling from front to back and also on sitting up without assistance. These are a few very specific things that we are working on a lot right now.

Sophie on the day of her dedication, Mother’s Day…more pictures have been added to the photo album.

Thank ya’ll for loving us and praying for us, please don’t stop.

She’s My Daughter
Written by Mark Schultz

I’m down on my knees again tonight
I’m hoping this prayer will turn out right
See there is a baby girl that needs Your help
I’ve done all that I can do myself

Her mother is tired
I’m sure You can understand
Each night as she sleeps
She goes in to hold her hand

And she tries not to cry
As the tears fill her eyes

Can You hear me?
Am I getting through tonight?
Can You see her?
Can You make her feel all right?
If You can hear me
Let me take her place somehow
See, she’s not just anyone
She’s my daughter

Sometimes late at night I watch her sleep
I dream of the little girl she’d like to be
I try to be strong and see her through
But God who she needs right now is You

Let her grow old
Live life without this fear
What would I be
Living without her here

She’s so tired and she’s scared
Let her know that You’re there

Can You hear me?
Am I getting through tonight?
Can You see her?
Can You make her feel all right?
If You can hear me
Let me take her place somehow
See, she’s not just anyone …
Can You hear me?
Can You see her?
Please don’t leave her
She’s my daughter

How is it possible that you break my heart so deeply yet fill my heart so completely? That is the power of the relationship that God has formed between us as mother and daughter. I long for so much from you, a smile or a sweet baby sound, yet you have already given me so much. You have brought out strength in me that I never knew I had, you have given me a deeper understanding of love, you have laid out before me what truly matters in this life. I know that God has worked all these things together through you. My relationship with Him is so much stronger because of you. What a privilege you have to be used so powerfully and so strongly by God Himself. The range of emotions I feel over you cannot be put into words, they are so deeply and passionately felt by the heart and soul. This Sunday, Mother’s Day, your father and I will publicly dedicate you to our Lord, there is no doubt though that you have been in His hands from the beginning.

My gift this Mother’s Day is the completeness and wholeness God has given me in allowing me to be the blessed mother of these four children. By His grace and mercy, may I see this journey faithfully through, may I find a way to experience genuine joy in life once again regardless of what the future holds, may I always hold tight to the One who has never let me go and may I be a faithful servant of all He has entrusted me with…Cooper, Jacob, Grey and Sophie Kate. I love you all, my precious babies.

Happy Mother’s Day to all the mamas out there, we are so blessed to be loved by so many!

Our baby girl is 6 months old today (Sat. May 3)!  Happy Birthday sweet Sophie.  Guess what your present is. . . you are spared 2 baseball games today, b/c it is pouring down rain here today.  It’s the little things you have to be thankful for, right sister?  It’s dark and raining here so we are all going to wallow in our pajamas and be lazy as long as we can get away with it.  Hmmm… is that a present for Sophie or for me? 

I also just realized that today is Saturday and that is the actual day that Sophie was born on.  I wish it were harder to remember that day than it really is, but I believe that is so I will never forget how far the Lord has brought us.  Things are better now than they were then and for that I am truly thankful.  God has brought us so far since that day and I know He still has so much to accomplish through her.  My prayer today is that as a family we will be obedient and faithful followers of God’s plan for our lives.  Through you, baby girl, God has changed us and by His grace and mercy we will never be same again.  Happy Birthday, sweet Sophie, we love you!

Inchstones-kinda like milestones, but smaller

Wow, what busy weeks we are having!  It seems with school coming to a quick end everything is in full on speed mode.  I feel like there is no time to do anything.  Anyway, we are continuing to do Sophie Kate’s Physical Therapy 2 days a week that will probably continue through the end of May.  Sophie’s PT is doing an intense treatment on her called Myofascial Release, it is the neatest thing to see.  It is way too involved for me to go into online, but it is so cool to see Sophie respond to it, it’s kind of like traditional PT combined with alternative PT.  I know that gives ya’ll no details but it is really hard to describe and I had to talk about b/c it is such a big part of our life now, 2 days a week.  Sophie is doing really well with it.  Praise God and our PT is a Christian isn’t that neat!

The occupational therapist(OT) that comes to our house through Early Intervention(EI) was with us this past Tues.(April 29).  She did some new things with Sophie that are very encouraging.  One was assisted sitting and I mean very little assistance, Sophie was even sitting up by herself for a few very brief moments.  I didn’t know Sophie Kate could even do anything like this, we have been working so hard on “tummy time” and helping her to strengthen her head and neck muscles that I didn’t even know this was a possibility at this point for her.  Now I know it doesn’t sound like much, but Sophie was actually showing signs of trying to balance herself and keep herself from falling from side to side while in the sitting position, she doesn’t have the strength to do that yet but it seemed like she was trying!  She also lifted her head and looked all around while in the sitting position.  Thank you Jesus that’s a BIG deal to us.

We’ve had to cut Wet Tots back to one day a week b/c of our 2 day a week PT appointments, but we are still doing it and Sophie is still loving it and I am still doing it b/c I am loving Sophie, so I think that about sums up Wet Tots.  Have I said before that those are great people there, I think I have, but really they are fantastic. 

This Friday (May 2) we are going to see Sophie’s surgeon, the one who did her fundoplication and gtube back on March 3.  Yes, it has been 2 months and we are going for her checkup, can ya’ll believe that?  I can it seems like it’s been forever, has it really only been 2 months?  Wow.  Oh, and did I mention that I get to be taught how to change her tube out myself?  Yeah, they told me that after she had her surgery, “oh and mom you’ll be taught how to do all this yourself at the 2 month checkup.”  Great, can’t wait. 

Well, I know it’s alot of stuff to throw at ya’ll, but please be in prayer for all of these things as well as our Hyperbaric Oxygen Treatments coming up in June.  

Also, I am looking for a new Bible Study so if any of ya’ll have one that you loved and meant a lot to you please let me know about it.   

 We had our Atlanta trip yesterday to check out the Hyperbaric Oxygen place over there that we are going to use for Sophie.  It went really well and was very encouraging for us.  The doctor and staff were very knowledgeable, gave us a lot of information, spent about a hour with Sophie asking us all kinds of questions about her.  They were very caring, it was definitely a good experience.  Chad and I both feel good about it.  We are tentatively set up to start her treatments on June 2, so that is very exciting.  Please be in prayer for this. 

Now for a little comic relief.  This actually happened a little while back but I couldn’t let it go without sharing it with ya’ll so that you all could feel my pain.  A friend called one morning, which is actually a pretty funny story in and of itself.  She told me that she was being moved by the Holy Spirit to come over and keep Sophie Kate so that I could go out and get a pedicure and that if I said no then I would be going against the will of God for me that morning.  Well, I certainly don’t want to be seen as one who is living outside the will of God so I reluctantly agreed (hee hee).  So off I went in a rare moment with no children, with spirits lifted for an hour or so of me time, by the way pedicures need to last way more that 30-45 minutes, don’t ya’ll agree?  Anyway, I get to the place, pick out my color and settle in to my comfy chair, thinking to myself that I am going to relish every bit of this.  After exchanging pleasantries with the girl that was doing my pedicure, which I need to go ahead and add included how many children I had and their ages (let me spell it out for you I just had a baby 5 months ago), I then dove into my magazine.  Well, it wasn’t too much longer when she was working on my feet, and I will give her credit she was “working,” that she made the comment.  Now some of you have to admit if you are being honest with yourself that you too have gotten this comment before.  I have heard others say they have received such treatment themselves before, but this was the first time it happened to me.  She said, “Hmm, it’s been a while since your last pedicure hasn’t it?”  Oh yes, she did.  Of course, I wanted to shout, “Hey, I have had little bit going on here, did I mention I have a 5 month old regardless of anything else, cut me some slack, would you?”  Now I was no more proud of the condition that my feet were in any more than my feet themselves were, but at least I was there and I was taking positive steps toward a growing area of concern.  After all it is getting time for the feet to come out again after a long winter in hibernation and the reason I was there was b/c I was not willing to take on that job myself.  I knew you all would feel my pain, it really wasn’t that bad, I had let it go just as soon as I had walked out the door with my toes painted, my spirits lifted and oh, by the way, did I mention that I had no children with me.  A little comment about my sad pitiful feet wasn’t going to get me down, not that day.

Hope ya’ll have a fun weekend!   

Alright, alright I am going to start my regular posts back, but please don’t forget about the last three posts written just b/c they are not at the top of the page anymore.  They are the three most important posts I’ve written so far, I wanted to leave them up there as long as I could.  We would really appreciate ya’lls help.

Wet Tots is going good Sophie really enjoys the water, as anyone would in water that is at or around 90 degrees right Theresa?  We have been going for about 3 weeks now so I am basically over all of my hang ups, mainly b/c of all the things that she can do in the water that are very beneficial for her and secondly that I don’t have to see anyone I know there (but that one is a very distant second, of course).  The people there are wonderful and they are so good with her.  They can do so many things in the water with her that I would have never thought of.  What a great addition they are to Sophie’s therapy team.  I just thank God for them, such caring people. 

Sophie Kate started physical therapy today (Tues. April 22), I know you are all thinking doesn’t she already go to PT?  No that would be every other type of therapy under the sun (not really and believe me I am thankful for that) but not PT.  Once again our wonderful Occupational Therapist has come through for us and recommended this PT for Sophie to go to.  Our first visit was great she is going to be so good for SK and she said that Sophie responded very well to everything she did today.  It was so neat to watch her, they really do different things than an OT even though they work so closely together.  We will probably be seeing her 2 times a week at least through the month of May.  So let’s see that brings our therapy count to 4 days per week.  Not only are Sundays our day of rest (or at least I thought it was supposed to be that way although I haven’t had a nap in 5 1/2 months) but now Thursdays have also been deemed our day of rest.  Amen to that, huh Sophie.

We will be going to Atlanta on Thursday of this week for Sophie to be evaluated for Hyperbaric Oxygen Treatments (HBOT).  We will meet with their doctor and their staff and I’m not sure what else in gearing up for Sophie’s treatments to start in June.  So Thursday will not be a day of rest for us this week, sister.  We will be consumed with all things HBOT in the month of June please be in prayer for this.  I described these treatments more in depth a couple of posts ago in the one about SK’s fund, if you missed it and want to go back and check it out.

Wow, I didn’t realized we had that much going on, but it has been a while since I posted about what Sophie Kate’s been up to.  She has also been attending alot of big brother’s baseball games in and amongst all the therapy visits.  Please be in prayer for everything that is going on right now, it is alot.  We are trying to take everything one day at a time, which is really all we can do.  There is no doubt in my mind that God has assembled all of these wonderful doctors, nurses, and therapists together for Sophie.  Most of them recognize what a miracle of God she truly is and the ones that don’t right now, well I know that they were placed there by God too, b/c one day they will see God through that precious little girl. 

And now the much anticipated debut of Sophie’s summer swimwear 2008…. 

Alright people, do I really not know anybody who knows anybody?  I’ve really got to get myself some influential friends with connections, just kidding.  Seriously, I am going to have to play hardball and start withholding information about Sophie to light a fire under you guys, aren’t I?  I’m not just talking to my Trussville family and friends here so those of you outside the state line are not off the hook either.  This raffle is going to be a really good way for us to raise money for Sophie it has been very successful for others that I have talked to, but I can’t do it all myself, I need some help from ya’ll.  So dig deep and think about yourself or anyone you know who maybe willing to donate something for us to raffle off.  I gave suggestions in my previous post of some examples of what other people have done.  I have also had another suggestion which goes out to all you Alabama or Auburn football season ticket holders, if ya’ll could donate tickets to one of the games this fall, maybe one which you know you won’t be able to attend.  I hear Alabama and Auburn football are kinda big around here, I don’t really get it (ha ha) but I know some people are really into it.  Anyway, come on troops let me hear from you!  Thanks

I can’t tell ya’ll what it does for my soul when I get up and finally get a chance to check the website and see messages on there that someone specifically prayed for us at a certain time or someone will come up and tell me that our family was on their heart and that they prayed for us at a specific time.  Of course I should not be surprised but more times than not it has coincided with something specific that has been going on with us or a particularly difficult time that we have been struggling through, or even just feeling down.  I know that there are family and friends out there praying for us diligently day in and day out, thank you so much for that it means the world to us, we couldn’t not be functioning as we are now without those daily prayers lifted up on our behalf.  Thank you also to those who leave us personal messages of “Hey you guys were on my mind and I have been praying for you”  that is all God and we know it.  It gives us that extra lift that we are not in this alone, b/c it does feel that way from time to time, it can be very overwhelming if you let it.  I feel like I have rambled on and on to make a very simple point that was on my heart.  Thank you for your prayers, we need them everyday!  God is so faithful, He knows what we need.  His Son Jesus is right there with ya’ll interceding to the Father on our behalf, what a comfort and a peace that gives us, please know that the Father is hearing your prayers. 

I am going to be updating with pictures soon about Wet Tots, pictures of SK only of course, but it is going very well there.  She loves the water and I am so thankful for that, I think this is going to be very beneficial for her.  Feedings are not any better and I am trying real hard not to let that dominate my life.  We are doing lots of tummy time right now, which Sophie is not particularly thrilled about, but SK is lifting her head and turning it from side to side so that is pretty thrilling and against Sophie’s will we will be continuing to work on that.

One other thing having to do with raising money for Sophie Kate’s fund, if any of you out there have any connections we are looking for something to raffle off.  Anything really that we could sell raffle tickets for and then have a drawing for the winner to help raise money for Sophie.  Some of the things other people have done are things like TVs, IPODs, gift certificates, dinner for 2 at a nice restaurant,  BBQ grills, etc.  Those are just some ideas be creative and think of the people that you know that might be willing to donate something for us, please let me know if any of ya’ll can help us in this area.  Thanks so much!

–

                                                                                                                                     April 10, 2008

To Our Family and Friends,

                This is one letter we were hoping we would not have to write on behalf of our sweet baby girl, Sophie Kate.  Nevertheless, here we are and we are having to reach out and ask those we love for help.  We are starting a fund for Sophie and we are asking ya’ll to help us defray some of the costs that are starting to accumulate in getting Sophie Kate the care and therapy that would most benefit her.  We would like to share with all of you the different therapies and treatments that Sophie is currently in and then some of the things that we are looking at in the near future.       

One of the therapies Sophie is in right now is Occupational Therapy.  Currently, we are doing this once a week with a fantastic therapist that we were hooked up with in the NICU and she so graciously agreed to continue seeing Sophie after we were discharged from the NICU.  In the near future, Sophie will also need Physical Therapy and further down the road Speech Therapy.  While insurance does cover these visits right now, once we get into seeing all three of these Specialists our insurance coverage only allows for a certain amount of visits per year (40 to be exact) for all three of these services combined, at that point we would then be paying out of pocket for these critical services. 

We are also starting a program called Wet Tots, which is a water therapy program for infants; it is done through the Lakeshore Foundation (www.lakeshore.org) here in Birmingham which among many other things provides services to special needs children.  This is not covered by insurance and is basically like paying a gym membership, where we then have access to the classes they offer, in this case Wet Tots, and use of the therapy pool anytime with Sophie.

In the fall we are considering starting Sophie at The Bell Center, which is a fantastic place here in Birmingham that provides services to children from birth to three years old who are at risk for developmental delays.  I love these places that specialize in such a specific age group, they really know their stuff.  The Bell Center comes highly recommended from Sophie’s Occupational Therapist.  Annually at The Bell Center we will pay $125 for evaluations and supply fees, then it will be $75/month for Sophie to go there 2 days a week.  Check out their website at www.thebellcenter.org. 

We are also pursuing non-traditional therapies like Hyperbaric Oxygen Treatments.  Wow, this is really an exciting area of treatment.  The clinic we are looking at in Atlanta can be found at www.prohbo.com.  Be sure to take a look at the article on the website about HBOT and cerebral palsy called “Flipping the Switch,” very exciting stuff.  Some neat things are being accomplished here when patients who have neurological problems such as cerebral palsy are being put under 100% oxygen.  These non-traditional therapies are not covered by insurance and are also 100% out of pocket for the parents.  Our cost for 40 treatments for Sophie, which is what is recommended, is $7,630.  We are trying to keep this all in perspective and in no way believe this is a cure all for Sophie (as much as we wish there was one).  What people are seeing is an overall decrease in irritability, a decrease in seizures (thankfully Sophie hasn’t had any), less spasticity, more focus in vision, increased strength and ability to smile/express/talk.  Now, of course all these things don’t happen in all children, we have no guarantee.  What I am hearing in general is a better quality of life and that one about a decrease in irritability, wow, I can only imagine how that would change all of our quality of life around here.

This fund, “Sophie’s Fund”will be set aside for Sophie and Sophie only and we are not talking about diapers, wipes and formula here.  This will be specifically for Sophie’s therapy and for her future.  Once again, this is not easy for us to do but we have to get over ourselves and do what is best for Sophie.  Right now our priority is the Hyperbaric Oxygen Treatments as we will be starting them in June.    Please know that  we will seek God’s will in this and will only proceed after prayerful consideration.  It is not all about Sophie after all, it is all about Him and we want to be good stewards of all He has blessed us with.

                                                                                                    With Love and Blessings,

                                                                                                    Chad and Amye McManic

To contribute to Sophie Kate’s Fund, please make your checks payable to Chad and/or Amye McManic and send to:  Chad and Amye McManic  P.O. Box 145  Trussville, AL 35173                                                                                                                  

I have put this post off for a while now just b/c I had to have some time to digest everything that is associated with Sophie Kate’s diagnosis.  I still haven’t fully come to terms with everything much less been able to accept all the things the doctors told me would happen to Sophie in the future, but I believe I am to the point where I can share her diagnosis with others.  Four days after birth Sophie was diagnosed with hypoxic ischemic encephalopathy (HIE), these are 3 horribly offensive words to me, I just hate them, as I’m sure all of you can understand.  Hypoxic ischemic encephalopathy is a type of brain injury that occurs from a lack of oxygen (hypoxia) and a lack of blood flow (ischemia) to the brain.  In Sophie’s case, this occurred when she had a massive bleed out from her own body back through the umbilical cord and into the placenta, which of course resulted in her being born not breathing and with no heartbeat.  These events are classified as mild, moderate and severe.  Unfortunately, Sophie suffered a severe event.  We still have no answers as to why this happened, medically speaking of course, despite the many tests that have been done both by my OB/GYN and by Sophie’s doctors in the NICU.  Miraculously, the event itself whether mild, moderate, or severe does not necessarily predict with 100% accuracy what the future will hold for these babies.  Sophie is doing many things that we were told she would not be able to do.  However, this is a permanent brain injury for which there is no cure. 

Only God knows what the future will hold for our family and we wouldn’t want Sophie Kate’s future to be in any other hands than those of her Creator.  The doctors do anticipate a diagnosis of cerebral palsy in the near future and do anticipate seizures in Sophie’s future.  The other things we have been told about what to expect in the future concerning Sophie Kate I will not even begin to list, they are far too painful.  That horrible evening is one I have been trying to forget, yet can’t ever get out of my mind and those things will remain between Chad and I.  No one will ever know some of the things that were said to us that evening and I know I never want them dredged up again.  The things on the surface are painful enough.  They have all been left at the feet of Jesus.  He can handle them, I cannot. 

We are going to concentrate on the positive things and praise God for every blessed day, that is all we can do.  She is a living, breathing, crying, moving, beautiful miracle of God.  That we can even hold her and love on her is a miracle, all the other things that she is doing are additional miracles and blessings that we praise and give glory to God for.  He is so faithful.  We pray for His hand to continue upon her.

If ya’ll think that this is all of the story, it’s not. There is more to come, I am setting ya’ll up BIG time!