Sophie Kate’s Journal

Hey, guys!  Sophie Kate had her CT scan and urology appointment on Tues. (July 29).  We found out that Sophie does have one kidney stone in her left kidney.  It is very small, like the first one she had.  At this point we are going to watch it and see if she can pass it on her own like she did with the first one.  We will go back for an ultrasound and a visit with her urologist in 2 months and we will probably do that until the stone has passed.  They want to make sure that it doesn’t get too much bigger and that it is not blocking anything or doing any damage to the kidney.  There is talk about running some tests once this stone has passed to see what has caused this second stone, but the doctor told us that nothing can be done until she is completely kidney stone free.  So please pray that Sophie Kate can pass this stone without incident, b/c as you all know she doesn’t really do “without incident” very well.  Then we can get started on seeing why this keeps happening to her and maybe be able to do something about it. 

I wanted to take some time to share with all of you something that has been on my heart lately.  I am in a group online that is made up of parents with a child with the exact same diagnosis as Sophie Kate.  I have told ya’ll in the past that there is not a lot of info out there on HIE for parents it all mostly consists of medical journals and articles.  I don’t really know how to not make this long and drawn out, so forgive me.  There are lots of great people in the group with good advice and good ideas and I am so glad that I found them.  A lot of them also have a family blog of some sort like we do and I read them from time to time just to keep updated with everyone.  The parents have shared on their blogs occasionally about how they will encounter different people who react to their child in a negative way or say something thoughtless or hurtful and these parents have always respond to these people with such grace and courage even though they have been really hurt on the inside.  Well, I have been thinking about this lately, I don’t know why, but I say all that to say this…We have been surrounded by such a great community of family and friends.  Everyone is so supportive, kind and caring toward us.  You are all so concerned about how Sophie Kate is doing and how we’re doing and we are so appreciative of that.  I know that SK is still very little and many people may notice anything at this point.  I also know that my day may be coming at some point in the future and I certainly do not look forward to that day.  As of now though, we have surrounded ourselves with some great people.  We go out a good bit with SK and see people we know and ya’ll are all so kind to us.  It is scary to venture out into the unknown, we have been doing that for 8 months now against our own wills I might add.  For now I am happy to be in my little cocoon here in Trussville.  We feel so supported and so loved by all of you and that is such a blessing to us.

These pictures were taken by my friend Abby, thanks so much, I just love them!

more pictures have been posted in the photoalbum

Hope everyone has a good weekend!

Hey everyone.  Sophie Kate has had a good week.  How could we not after last week, right?  We got to hook back up with SK’s Occupational Therapist this week.  We haven’t seen her since the end of May, right before the oxygen treatments started.  It was so good to see her again, she has definitely been one of the most important people involved in Sophie’s care. 

Some of the things we continue to work with SK on are:  sitting up unassisted, rolling over (front to back), following objects with her eyes, and grasping and holding onto toys just to name a few.  Sophie is still progressing on the sitting up part, although it is very slow progress, but she is doing a very good job of holding her head up when she is in the sitting position.  I would say she is sitting with some assistance.  As far as the rolling over goes, SK is able to get her shoulders and trunk to roll over but she just can’t seem to get her hips and legs to follow suit.  Sophie Kate does lots of tummy time and holds her head up well then too. 

As far as feeding her goes, I would say we have completely given up on the bottle.  I did try giving her a bottle a few times in June and it was a complete disaster.  I just decided it wasn’t doing her any good to scream like that for that long while I tried unsuccessfully to force her to suck from a bottle.  We have certainly not given up on feeding her altogether though, I can’t imagine doing that, besides she has always been able to swallow better than she has been able to suck, so Sophie Kate is now eating rice cereal once a day.  It’s not a lot, like you would imagine spoonfuls being fed to a typical baby, but she is doing it.  We thin it out quite a bit and give her a little at a time, but I would say she is doing pretty good with it.  I have even started adding applesauce to it.  I think she’s enjoying it just fine, let’s put it this way there isn’t any screaming or protesting involved in fact nothing even close to that.  Her doctors still say that they expect her to be 100% tube fed at some point, but we are not giving up that easily.  They don’t know what God expects of her.  I am quite proud of my baby girl.

Coming up next week on Tuesday (July 29) Sophie will be having her CT scan and urology appointment to see if she has any additional kidney stones.  Please be in prayer that these will not be kidney stones.  Her doctor said that it could be several other things that would pose no problem at all to Sophie.  Also please continue to pray for the developments and milestones I listed above, we work on these and many other things everyday.  I pray that what we are doing is beneficial to her, the progress is just very slow.  Pray also for the oral feedings, that we can continue to increase what she is getting and that Sophie Kate will be able to handle more and more food by mouth.  Pray for her vision and for her brain development.  Sophie Kate needs brain growth as well as development and organization of her existing brain and brain function.  We get down, but we do not give up b/c we know that nothing is impossible with God. 

Thank you all for your commitment to pray for Sophie.    

Just a couple of pics of SK’s first attempt at eating rice cereal, actually it didn’t go this well with a couple of the boys.  Way to go sweet girl!

Have a great weekend!

What a joy it is to write to ya’ll this morning (Friday July 18).  I am just thrilled to be able to share with ya’ll the news we got from Sophie Kate’s video EEG and the appointment with her neurologist, yes the same neurologist that I had taken quite a disliking to to say the least.  Sophie Kate is NOT having seizures, did ya’ll hear me screaming that, b/c I am still hardly able to contain myself!!  She has not had any seizures and she is not currently having any.  The movements that I had described to him that he thought were seizures are not and she did those movements all morning long yesterday during the test, so he got to see the movements and then the EEG pattern that went along with them and they are absolutely not seizures! 

We give all of our thanks and praise to God, we know w/o a doubt that all of this comes from Him.  We know that our God is a mighty God, that He is in complete control, and that sometimes His will is to do a work in a life Himself and sometimes He chooses to work through other means like modern medicine.  We just know that all good things come from Him and all of this has His handiwork written all over it!

Sophie Kate’s neurologist was “quite pleased”(his words) with everything.  Not only was there no seizure activity, but I felt like he was pleasantly surprised by her EEG in general.  He did say that it was still an abnormal EEG and that she was still at a pretty good risk for seizures in the future.  However, Theresa and I (she went with me for support, lots of thanks to my dear friend) both felt like although he said she was still in the range of what he is expecting out of her that she is kinda in the high range of what he had expected of her.  We both felt like he was very positive and somewhat pleasantly surprised himself.  We do not have to go back and see him again for 6 months. 

This is all just unbelievable to me and I kind of hate to say that b/c it really shows my lack of faith in God.  I know in my head that He can do anything, this should not be surprising to me.  I have really been on empty the past few weeks.  I had dreaded this week and all these appointments and tests for so long and really did not expect any good to come out of it.  A couple of posts ago when I was writing about this appointment coming up I wrote “or how about no seizures at all,” I in no way believed that that would happen.  My best case scenario for yesterday was that she wouldn’t be having very many seizures and maybe we wouldn’t have to have medication yet and maybe we could just wait until they got more frequent before we had to medicate her which I knew would probably happen too.  Well how glad am I that God doesn’t go with what I think!  It reminds me of the verse “No eye has seen, no ear has heard, no mind conceived what God has prepared for those who love Him”  I Corinthians 2:9.  Praise God for that, I don’t know everything, I certainly can’t predict what God is going to do and I can’t even image what He has in store for our family.  That is why our hope is not found in this world.  Our hope is found in the Creator of the universe and He is always in control even when we may not be feeling it.  He knows when we really can’t take anymore, when we are empty, tired, questioning, doubting and just all out having a crying fit.  He sticks around and doesn’t leave us and just when I think, do You really even care anymore, do you still know we are down here struggling every single day…. He blesses us with these gifts.  He knows what we need and when we need it.  Thank You, Jesus! 

Thank you all for your prayers this week, your calls and your concern, your help and your support.  As Chad and I were reflecting on this week, we realized that this is the best news we have received about Sophie in her life!  Hope everyone has a great weekend, we certainly will.  Praise God for all He has done in the life of our baby girl this week, we are so thankful!!

Yes, SK we feel the same way!!

More pictures have been added to the photoalbum

Sophie’s eye appointment was yesterday (Monday July 14) and it went kind of like I expected it to.  Sophie has cerebral (or sometimes called cortical) vision impairment, also known as CVI.  It is where the brain is not processing what she is seeing, so yes she can see.  I really felt like going into the appointment that she could see some, I knew it wasn’t great, but I would have been devastated if he would have told us that she couldn’t see at all.  The doctor actually said, “She is not blind.”  That was a great relief to hear that from him.  What this means for Sophie Kate is very vague, like almost every other diagnosis we have gotten concerning her, it means they really don’t know.  Her vision is going to be a product of her brain function and since we don’t really know how that is going to turn out, we really don’t know what her vision will ultimately be.  He does expect her vision to improve some of the next few years and he emphasized it would be years not months.  He told us that as her motor skills improve so would her vision, blc that would mean that her brain is growing and/or is able to learn new things, does all that make sense?  I hope so.  One of the nicest things we heard yesterday was when her eye doctor said he was “cautiously optimistic” that her vision would improve.  We have not heard “cautiously optimistic” used to describe anything concerning Sophie so that was nice to hear.  Bottom line:  Sophie Kate can see, her brain just does not know how to process or recognize what she is seeing.  We are going to be starting vision therapy soon that will stimulate her vision and hopefully eventually her brain will be able to jump on board, only time will tell.

As a funny side note, when I wrote at the beginning that the doctor said, “She wasn’t blind,” I originally wrote that “She wasn’t bling.”  I didn’t catch it until I was in the proof reading stage.  I just had to laugh b/c that isn’t true at all, she’s totally bling and everything that goes with that.  Hmmm…. what comes to mind, ummm…high-maintenance, spoiled, moody, oh and demanding.  The world revolves around her over here and she knows it!  Except for today, the world does not revolve around her today, it revolves around Jacob.  He turns 6 years old today.  Happy Birthday big guy!!  I adore your sweet spirit and your unbelievably funny personality, you can always make me laugh.

Hey everyone. Hope you all had a great 4th of July weekend. We had a fun time visiting family out of town.  Sophie Kate and I are glad to be spending time with brothers and Daddy this week, it is good to be home.

I wanted to take a little time and update ya’ll on what is going on with Sophie right now. We have had several doctors appointments already this month and have a few more coming up. We have always been transparent with ya’ll and honestly I really don’t know any way else to be. If you know me, you know that I’m not really good at hiding my feelings. Most people know when something is bothering me. So I am just going to lay this all out for you.

I’ll start with SK’s urology appointment. With every thing else that has been going on, most people have forgotten(and understandably so) that Sophie had a kidney stone in her left kidney. We went to get that checked out yesterday (Tuesday, July 8). That kidney stone has passed without incident; however, the ultrasound showed three other spots, 2 in the left and 1 in the right, that could be more kidney stones. Sophie’s urologist said that based on what he saw he is not 100% convinced that they are stones, they could just be protein deposits. So we are going for a CT scan on July 29 so that we can know for sure. Please pray that these are not stones because we are going to be dealing with a whole new ballgame if they are, like being referred to a nephrology(kidney) doctor as well as possibly having to have these things removed. Also, there is a slight swelling in one part of her left kidney that her doctor said should resolve on it’s own, but that we would keep a close eye on it. Actually what he said was that only 1 child in 1000 would have a problem with this to which I promptly replied, “She is a living 1 in 1000.” He then said that is why we will be watching this so closely.

Next, the neurology appointment Sophie had a little over a week ago. Bottom line Sophie Kate is having seizures. It is a long story as to how we came to discovering this, but when I described her behavior to her neurologist he said that that was a seizure. They are not what you typically think of when you think of a person having a seizure, that is why it is so hard to diagnose. He is sending us for a video EEG on July 17. It will take about 3 hours and in addition to having the EEG done Sophie Kate will also be video taped the entire time so that they can actually see her behavior. This will give us a good picture of what is a seizure and what is not. Or how bout no seizures at all? Wouldn’t that be great?!

Lastly and probably what is giving me the most anxiety at this point is her opthamology(eye doctor) appointment on July 14. I really don’t know what to say about this, it is really hard to explain all of the possibilities that we are facing here. I feel like she has some vision but obviously it is not 100%. We will have all our questions answered on Monday I guess whether we want to or not. I am a mess about this one. All of the answers to our prayers have been no at this point and that is getting really really hard to handle.

Things just have not let up at all since we finished our oxygen treatments in Atlanta. There is never a break, there is never an end, and there is never any down time. I am tired and I fear that this is just our life now, please don’t let it be so. Thanks for listening guys.

Sophie Kate is 8 months old today!  Happy Birthday baby girl, my gift to you is no more HBO treatments.  Yes, we are officially done.  We came home for good on Wednesday, yeah!

The neurology appointment that we had last Monday is a discussion for another day, if ya’ll would allow me that.  Please be in pray for this situation though, we have some upcoming tests and appointments in the month of July that I will share with ya’ll soon.

For now we are going to try to enjoy the upcoming weekend with our family, we hope ya’ll do too.