Sophie Kate’s Journal

 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!

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                                                                                                                                     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!           

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.