Sophie Kate’s Journal

We have been visiting way too many doctors offices lately.  Nothing major just your everyday run of the mill draining of an abscess, a scope for SK’s airway b/c of her “noisy breathing” and then coughing, sneezing and all manner of other gunkiness.  When we left the doctor’s office today, we all realized that SK may actually make it a whole 3 weeks before we have to see a doctor again.  Wow, wouldn’t that be something.  On that same note, I have to tell y’all that we are trying to get SK on the Medicare Waiver program.  Well, one of the questions we were asked in our telephone interview was “Do you see a doctor at least every 3 months?”  Chad quickly replied, “Oh that we could get to the point where we ONLY saw a doctor once every 3 months.”  My other favorite question that I am asked every time we go to an appt. and/or are admitted to Children’s Hospital is “Do you see any other specialists for your child?”  My response?  “Yes, lots” and I leave it at that, thinking to myself, please don’t go there, neither you nor I have that kind of time today. 

Anyway, back on track to the doctor’s appointments.  The gross drainage is gone(yay), SK’s little bellybutton area still has some healing to do, but it is looking much better.  We saw her ENT b/c her “noisy breathing” seems to be getting nosier.  He put a flexible scope into her airway and looked down to her vocal chords (not fun AT ALL), but actually concluded that she doesn’t look as bad as she sounds.  I’ll take it, good day sir.  No seriously, considering everything our girl has been through and how many times we have heard that everything will be fine and then it isn’t, I was thrilled with a “things don’t look that bad” report.  He said at this time he would not recommend any intervention since she didn’t seem to be in distress.  Of course he couldn’t leave us without one last “my goodness she is quite noisy though.”   That’s my girl.

Lastly, SK does have another cold with coughing, sneezing and bringing up all manner of secretions.  Even now I can hear the familiar sounds that come from her room all too often.  The droning sound of the humidifier, the repetitive turning and clicking of her feeding pump, and the familiar sound of SK’s breathing that we have all grown to know and love around here hopefully helped out tonight by being propped up on her wedge. 

Despite all that we have been dealing with over the past week, Sophie Kate still continues to feel better physically from her surgery a little over a month ago.  The more I see her regain the more I am reminded of how much she truly lost and how much that surgery set her back.  She is sitting with minimal assistance from me for a few seconds at a time.  She hasn’t done that since Valentine’s Day and I mean wouldn’t even entertain the thought.  She is also rolling over again from front to back.  I know, I know that used to be one of her favorite tricks but she hasn’t done it for almost 2 months.  Guess what…she’s back rollin’ rollin’ rollin’.  Putting weight on her feet and trying to stand also used to be a favorite past-time of Miss Sassy, that’s been absent for months as well, until last week at Wet Tots.  She did a lot of standing with her teeny tiny ankle weights, no joke, she totally rocks her itsy water weights.  She is also attempting to put some weight on her feet outside the water as well.  Thank you, Jesus!   

On a completely different note, we are all pumped that baseball season has finally started around here.  It is a welcome distraction for SK and I from doctor’s visits, therapy, classes and the many other evaluations and appointments we have every week.  I love the sounds of the ballpark, especially Grey’s running commentary whether from the bleachers or from the dugout.  Oh yes, he’s so close to the action that he can actually smell it, eww gross! 

I’ll leave you with this picture from Cooper’s last baseball game after a beautiful slide into 2nd base.  That’s right baby, there’s no crying in baseball.   

Sophie Kate has had a pretty good week.  We are still dealing with some lingering crying issues in the evening, which is very frustrating.  However, her days have been good and I can tell that she is feeling better and better each day b/c those sweet smiles have returned in full force.  I did have to take her in to the doctor today for something that had popped up over the past few days on one of her incision sites from her last surgery.  Turns out it’s a small abscess, of course it is, it’s Sophie Kate isn’t it?  So she will now be on a 10 day course of antibiotics (wonderful) and then we go back to the doctor on Tuesday to make sure it is draining (gross) and then healing properly w/o infection. 

SK has had another good week of therapy, which we are so thrilled with, it is so encouraging.  We are starting to work with a Speech Therapist who is introducing communication devices to Sophie Kate.  She can actually push a button and hear people sing to her.  It’s all very exciting, I’ll give y’all more information as we get further into it.  She gets a huge smile when people sing to her, she loves music.

I have to share this one picture with y’all of the first time I put SK’s hair in pigtails.  SK, I am so sorry that you don’t have a mama that can do girl hair.  I did the best I could, it was pretty funny.

It’s the battle for supremacy, 3 year old Disney checkers, they like to do things old school style, aren’t they hysterical?

Finally, it’s time for the spring dresses to come out, we are sooo ready, just a sweet moment with Grey and SK.

It’s opening weekend for baseball here and we are so pumped about watching our boys play.  It’s supposed to be a nice weekend here after way to many bad weather days, can’t wait to get out to the ballpark!  Have a great weekend!

 Sophie Kate’s flyers are here…

A HUGE thanks to First Baptist Church Trussville for printing all of our flyers on the cutest shade of pink ever.  Now, we need all of your help, so once again troops I really need y’all to mobilize in a big way.  Our plan of action here is two-fold.  First, we need y’all to help us get these flyers out to the community.  So, if you have anyone that you can hand flyers out to let us know, like sports teams, dance/cheer groups, area businesses, church groups, and even in your neighborhood, Theresa Suhr, Traci Collins and I all have them, just get in touch with one of us.  We have got to get them out to as many people as possible.  Second, we are going to need volunteers on the actual day, Monday April 13 to help us at Chick-fil-A.  We are getting a sign up sheet together and are starting to fill slots in so please let us know if you will be able to help on that day as well.

We want to be very quick and careful to give God all the glory for this wonderful opportunity.  This day is not all about Sophie Kate (sorry Miss Sassy it’s not).  We want the message of God’s faithfulness and unfailing love to show through.  We are so thankful for the community support we receive here in Trussville, Alabama.  Can’t wait to see everyone at Chick-fil-A on Monday, April 13, save the date!     

My littlest man will turn 3 on Saturday.  Of course I want to say that I can’t believe he’s fixin’ to be 3, but see the thing with Grey is that he thinks he’s 6.  It makes me so sad that he wants to be grown sooo bad, I just wish he would act like he’s 3 that would make my day.  So in a last ditch effort to get his 3ness back, we are going to take him to Playhouse Disney Live on Saturday along with his best friend Jacob and his mama Mrs. Misty (or to Grey just Misty, yes my three year old calls my good friend Misty by her first name, I think it’s the Mrs. Misty that he stumbles on b/c he doesn’t do that with anyone else, it’s pretty funny though).  We are going to see Mickey Mouse Clubhouse, Little Einsteins, Tigger and Pooh, and many more live on stage. Oh yes, you will be three Grey, you will!

Don’t feel sorry for him yet, he did get a party.  We had a Star Wars party for him when we were at my mom’s over Spring Break.  Once again, not a typical 3 year old thing but he does have older brothers you know and believe me, he can play Yoda like nobody’s business, excuse me I meant to say Master Yoda, Grey corrects me on that all the time. 

Grey with his everything Star Wars cake.

Oh, that face, I’m not sure what to say about this one except wow, Cooper could you stop shoveling cake for one second.

No one wanted to break the theme of the party, so Grey got his own lightsaber (yay, now we have 3), he got his own Clone Trooper gun (I know way too much Star Wars lingo) and he got his own little Star Wars people to play with, all is right with his world, I can tell you that.

SK and Taylor (my cousin’s daughter) were able to meet up again, they came over for the party.

Aren’t they sweet together?

SK is sooo over Star Wars, but she looks so darling when she’s annoyed.

Just wanted to let everyone know, since the posts have been kind of downers lately, that SK had a really good week at therapy.  Her therapists had commented on how much of a setback SK has had since her surgery, but this week they all thought that she looked so much better and also looked like she felt better.  Everyone was very encouraged by her progress over the last week and felt like we weren’t as far off of getting her back to her pre-surgery self as we had once thought.  That was great for us to hear from them.  I can tell that she has been feeling better lately, her crying and her irritability are definitely down, but once again I’m afraid to say it too loudly, but I wanted to let y’all know b/c you have been so faithful in your prayers for our sweet Sophie.  Love y’all, thanks for loving our girl. 

We’re back and let me just start off by saying that the first day back is a bear!  We are dragging around here like zombies.  It was so nice to have a break from everything-school, baseball practice, our regular routine and even computering.  Yes, I was a good girl, I didn’t even take my laptop with me.  We spent the week at my mom’s house visiting with my sister and her family and lots of cousins.  It was a good break especially getting away from the regularness of life here. 

First things first, Sophie Kate seems to be doing better.  I’m afraid to even write that for fear that things might take a turn for the worse again, but I do want y’all to know that we haven’t had a “major crying episode” since Thursday…..shhhh don’t tell SK, we’re keeping it on the “downlow.”  She does have a cold that we saw the doctor for 2 times before we left to go out of town, unfortunately it is still with us.  Hopefully, she will be able to fight this one off herself, we’ll see. 

As for Spring Break, the jury is still out, in my mind anyway, about who had more fun, the boys or Chad, who let me remind you had 4 days in the house by himself with peace and quiet.  My vote is unanimous for Chad but I think the boys would veto me huge on that one.

Here’s a little glimpse of how we spent our Spring Break…. 

The boys had biscuits with gravy/jelly and sausage balls every morning and as for me, my mom bought my favorite coffee creamer, so I was a happy camper too.

Then there were brand new legos for everyone and that was just the first day, how am I supposed to compete with that?

SK enjoyed her second favorite thing to do, sitting outside.  Her #1 favorite thing to do is for someone to hold her while she sits outside, can you say SPOILED!

Sophie Kate on a happy morning before her bath.

My niece Emma Claire loves to help with SK, don’t let Grey give you the wrong impression here.  Emma Claire had helped me give SK a bath and then Grey jumped in there at the last minute “take picture me too wif Sosie Kate.”  Emma Claire would be real quick to tell you that he didn’t do anything with SK, she did.

How sweet!  I love this one and they love each other.  Isn’t that darling?

SK still happy even after her bath.

There’s more to come from our spring break adventures, I just don’t have time to post it all this morning, I have to go now and be “mama” today.  We had a birthday party for Grey while we were there, I can’t believe my little guy is almost 3.  No pics of him in his underwear this time though, I made him wear clothes b/c we had a lot of company. 

Please be in prayer for Sophie Kate’s therapy this week.  This surgery has caused a HUGE setback in therapy, all of her therapists have commented on it.  She has lost a lot of the progress that we had been making, we’ve got a huge task of catchup ahead of us and SK is not real big on cooperating on any of it.  It’s back to reality here.  I hope we can survive the 2 months until school’s officially out, there are no more breaks, yuck!! 

Thanks for checking in on us, have a good Monday.

The progress has been very slow around here concerning SK’s “bathroom issues.”  She is still crying quite a bit and from time to time I am not sure that this is really the problem.  We were doing way better than this the first time around with this surgery.  She is still crying really really hard every day and I am at a complete loss as to what the problem is if it is not her GI problems.  One thing I do know for sure is that all of us are sooo frustrated and sooo sick of this.  I talked to her pediatrician today (Friday March 13) and was actually a bit encouraged after we got off the phone, but as the long evening and night have worn on I am becoming less and less optimistic.  We need some wisdom, healing and relief over here and we need it right now!

Spring Break has officially started here and if there was anything else we needed a break from, besides Sophie’s incessant crying, it’s school.  It’s just that they really expect the children to be there everyday and we are really tired.  We need some lazy mornings in our pjs w/o SK crying, that is what I want, along with afternoons, evenings and nights w/o SK crying.  The kids and I will be heading to my moms this week  for some time away.  I’m not sure how well it’s going to go seeing as how we have made no progress in figuring out what is going on with Sophie Kate, but nevertheless we need a change of scenery.  I can’t even tell y’all how jealous I am of Chad, 4 days of heavenly bliss and not having to listen to one second of SK crying.  I told him when I came back, it would be his turn to go out of town with the children, ha ha.

I will leave y’all with this super sweet picture of Grey and Sophie Kate.  He is so sweet with her, I adore him.

Hope everyone has a great week.

I think we have figured out what has had Miss Sassy so upset over the past week and I am trying to think about how I can discreetly and with Sk’s utmost dignity in mind tell y’all about it.  Let’s see….umm…..Miss Sophie is having some major “bathroom” issues, as in not being able to, if y’all know what I mean.  Now I’m not saying that she hasn’t been able to go at all, just not very much and not without a lot of weeping, wailing and gnashing of teeth. 

Whew!  I can’t tell y’all how happy I am to finally get this thing figured out.  It is beyond frustrating to endure night after night of crying and painful screaming and not know what is wrong with her.  It is a terribly helpless feeling.  What a relief to have an answer and we didn’t even have to go to the doctor this time.  So, I won’t go into detail about the solutions to this problem b/c that would be compromising her dignity and privacy “big time.”  Let’s just say that today (Wed. March 11) is better than yesterday and hopefully we are getting back on track here. 

The second time around with this surgery has been so difficult on my baby it’s time for her to feel better for a really long time.  Thanks for checking in on us and pray that there will only be good things to report from now on.  

I guess I spoke too soon in the “Feeling Better” post.  The past 5 days have been a strange mix of misery and fun.  First, the fun, we went to 2 birthday parties this weekend, one with friends and one with family, but both had my boys laughing and running wild.  It was a beautiful weekend here and the parties were outside for the most part.  I love hearing the sounds of kids playing outside after having been inside most of the winter.  We are also in full on baseball practice mode around here and it was so nice to be back at the ballpark.  I love weekends spent there, thank goodness SK does too, I don’t want to miss those boys playing ball for anything.  It was just what we needed to be reassured that Spring is on it’s way. 

Now for the misery part, SK has not been doing to well over the past few days.  We are still giving her way more pain medicine than I thought she would be needing at this point.  Mornings and afternoons are fussy and whiny and then evenings and nights are all out screaming and crying.  We are trying all different kinds of things to make her more comfortable and are exhausting all the things we know to do.  Please pray for some wisdom and clarity in this situation.  I am going to call her surgeon tomorrow (Monday March 9) to let them know what’s going on here.  I just don’t know what else to do.  This is not how our little Sophie acts and we are soooo wanting to get back to what is “normal” for her.  Please pray we can figure this out quickly, this is so difficult to watch.  I want the sassy back in my little Sophie.    

I just gotta say that not only is Sophie Kate feeling better, but we are all feeling better.  No, no one has been sick this week, it’s just when Sophie ain’t Miss Sassy ain’t nobody happy, know what I mean.  Finally, I feel like our little girl is starting to turn the corner and is truly feeling more and more like herself.  I have seen lots of sweet smiles out of her today (Tuesday March 3) and as many of you know she doesn’t always give those away so freely.  I haven’t seen one since last Wednesday morning and it speaks volumes to me about how much better she is starting to feel. 

SK’s feedings are going good.  She is getting fed every 3 hours during the day and is still on continuous feedings during the night.  The orders right now are to do smaller more frequent feedings so that her stomach doesn’t get too full causing her to vomit.  Her doctor actually said that we’ve got to keep her from vomiting during the next four weeks, terrific, that will be no problem at all (insert sarcasm here).  It’s so frustrating b/c we finally had a new feeding schedule that I could actually get excited about.  It allowed for 2 oral feedings per day and then all this happened, we never even got to try the new schedule, we have definitely taken a few steps backwards in the area of feeding. 

Her pain is being controlled much better and each day she is requiring less and less medicine.  She is completely off the heavy duty stuff and has required no more than Motrin all day today.   In Bible Study “Mama Beth” talked about being courageous and brave, take one look at little Sophie and you have seen those two qualities in action.  She definitely defies what we think someone so tiny is capable of.

We had a beautiful snowfall here on Sunday when we brought Sophie Kate home.  I just wanted to leave y’all with some of the fun all the boys had, SK and I aren’t much for bitterly cold wetness. 

Ok, I couldn’t resist this little guy getting all bundled up to go outside in the snow, please note that he is wearing pants as it is a rarity for him around here.  

All smiles, so far so good.  This was the most snow any of my children have ever seen here.

Everyone had to write their name in the snow.

I’m not sure what he is doing here, he liked going around with a stick and knocking all the snow off the low-lying bushes.

Preparing our snowman….

Our snowmickey, or our sad pitiful attempt at making our snowman look like Mickey Mouse, at least he looks happy.

Oh yes, it wouldn’t be a fun day in the snow if someone didn’t end up crying, at least it wasn’t me this year.

It really was pretty even if it was short lived….

We are taking it easy this week.  I guess if there is any upside to all of this it would be that I got to clear our calendar.  SK needs some serious downtime in order to recover and I am thinking that one week of house arrest isn’t all that bad…..thanks for checking in on us.

Yes, it’s true Sophie Kate came home today (Sun. March 1)!  After three days and two doctors telling us that we wouldn’t be going home until the first part of next week, SK decided to cop an attitude and say “We’ll see about that.”  So on Sunday morning, I was completely shocked to get the call from Chad, who had just spent his second night at the hospital, saying that SK was being discharged today, yay!!

The first 24 hours were absolutely horrible for her, as they had said it would be, although I would have never imagined it would’ve got that bad. Friday night was better for her and then finally early Saturday morning they actually started her back on a very, very small amount of formula.   About mid morning on Saturday her IV failed for the second time and they were unable to get one started back, so after 7 IV sticks total this time, SK was finally done w/IV’s and they decided to try her with pain medicine that could be put through her feeding tube.  As the day went on Sophie’s feedings progressed and she did fine with each one.  So I think once her pain was undercontrol and she was tolerating all of her feedings fine, then there was really no reason to keep her any longer.  They sent us home with pain medicine and that’s really all we needed to head for the door and get our little girl back home with us, where she belongs.   

First day post-op, not a happy camper and I don’t blame her one bit.

Sleep finally comes…

Some of the visitors Sophie Kate had on Saturday, can’t you see the “thrilled” written all over her face.

Post-op day two, ahhh….pain meds, it’s a good thing.

A bath, your own clothes and some snuggly love go a long way.

This one was taken with my phone, not very good quality, but we are leaving the hospital so I couldn’t not include it.

Grey went along to bring baby sister home.

We have such a love/hate relationship going on with this place, so thankful that they are so close and hate that we’ve had to be their guest so often.

We are all so glad to be home, almost anything can be managed better from here.  SK knows she’s home too, she’s always sooo much better and sooo much more calm when she is in her own space. 

Thanks to MiMi and PawPaw for all their help over the past few days and thank you all for your prayers, phone calls, visits and love sent our way during this time.  I’ll keep y’all updated on SK’s recovery.