ABS surgery at Shriners Hospital

We have passed another major step in Katie's little life.  Six months to the day from Gotcha Day, Katie had her first ABS (amniotic band syndrome) surgery at Shriner's hospital in Shreveport.  We knew that she would leave the hospital in 3 casts which would really slow down this active two year old, so we decided to try to make a weekend mini-vacation in anticipation of a not-so-fun 2 weeks post-surgical.

We had some concerns before we even left on the trip because Jaden had a stomach bug and kept having vomiting.  We kept Jaden and Katie separated as much as possible during his illness, but the day before we were to leave on the trip he was still sick and we decided that he would stay home with Laura instead of going on the trip.  Fortunately, Saturday he felt much better and so he and Laura went on the trip ... she drove separately so we could separate them if needed and so she could take him on home if he got sick again.  (He did continue to have episodes of sickness but would feel fine in between ... not enough to slow him down!)

We went to the Great Wolf Lodge in TX for Saturday and Sunday and drove on to Shreveport Sunday evening.  The indoor water park at the Great Wolf Lodge was a ton of fun for both kids.  They have a wave pool and a pretty good sized kiddy area and a lazy river.  We spent several hours there Saturday evening and topped off the evening with pizza and cookies.  It was a nice break before the craziness.  It was a blessing that Laura was able to come to keep an eye on Jaden and to help entertain the kids with me when Tim took a little break and went to see the band Colony House in Dallas.  (This is the band that Steven Curtis Chapman's sons have formed.  It seemed very appropriate as SCC is part of the whole path that we took to get to adoption.)

Monday, we had to have pre-op at Shriners and we were under the assumption that Katie would have to have blood work done.  We pushed fluids like crazy to make the stick easier, but when we met with the anesthesiologist he said that the newest guidelines state that with an otherwise healthy child, no lab or ecg was needed!  Whoot!  We'll still have to do it at some point, but right now it was wonderful to avoid that scary event with her.

Katie did incredibly well with the doctors and nurses during her pre-op visit.  She let everyone check her pressure and examine her as needed without much fear.  She was much more comfortable this time than last.  I think that hanging out with my nurses and staff helped her be more relaxed with medical stuff.  Once we saw the Child Life Specialist, we were given a key to our guest room upstairs at Shriner's and were finished with medical stuff for the day.

We went back to Eldorado Hotel where my sister and brother-in-law were staying with Jaden and Laura, and we had a nice visit.  My sister brought home grown satsumas and a juicer and we all had fresh juice, yum!

The plan was for the big girls to have some girl time and the boys and Katie to go eat at the noodle bar, but just as they started to go in the restaurant Katie gave back all of the liquids we had been pushing all day.  Unfortunately for Tim, it was just as he was picking her up to see how she was doing.  He needed a shower and a new set of clothes.  Katie looked more confused than upset but still...Yuck.  Laura had a jacket on and so donated her shirt to Katie, who also needed a whole new set of clothes.  We decided to ditch the girls night and take Katie on back to the guest room at Shriner's.

We were very nervous that they would postpone her surgery since she had thrown up, and we were worried that perhaps she had gotten Jay's illness.  We were worried that they might cancel her surgery.  Many prayers and a sleepless night later, they felt like a single episode my have just represented a vacation diet or nerves and so we were still on the schedule!

She was on a clear liquid diet after midnight until 7 am.  We tried to wait until just before time to give her a full bottle so that she wouldn't have as long to be hungry.  When her surgery was scheduled, she was the youngest but between that visit and this one, 2 younger children had been added to the schedule.   Two little girls 5 months or less, that both had Amniotic band syndrome and needed surgeries very similar to Katie's were in the room with us.  They were first and second on the surgery list, with Katie being third.  The one that was just before Katie was adorable!  At five months old, she was about a pound heavier than Katie.  She was not happy about being without food!  :)  That pushed her back from the 7am, first surgery, to about noon.  I was worried about her being without food that long but needn't have worried.  She never once indicated she was hungry.  It really drove home the fact that she rarely tells us she is hungry; she just accepts that mealtimes will come if and when they come.  I know I sometimes irritate people (sorry, Laura) when I remind them to offer food to the two littles in our home but I think Jaden and Katie were so used to being hungry that they still don't think to ask for food when they need it.  :(  Anyway, she did fine.  Shriners is AWESOME with the kids.  They have a dedicated playroom for the littles that has tons of ride on toys and pull toys, wagons and tractors...you name it and if it is fun for the preschool age group, it is there.  They also had a welcome gift for her with a princess wand, a stuffed pig, a book and an Elmo etch a sketch.  She stayed busy and happy the entire time.

About 11:30 they brought her some pre-medication that had Versed and Atropine in it.  Let me say, my little girl enjoyed the Versed.  It made her giddy and very relaxed.  She fixated on her socks and if you said "socks" she collapsed with laughter.

When they wheeled her away from us, she looked a little confused but not terribly concerned.  The only time I got tearful was when we prayed for her after she left;  I wasn't sure how she would do away from us with everything that was coming.  They promised to "gas" her before the IV though and so I hoped all would go well.  About 20 minutes later, they called to tell us that the surgery had started and that she had done very well.  She never shed a tear.  The nurse said they all fell in love with her because she was so sweet and fun.  They said every time they would tell her what they were about to do she would say, "Sure!"  or "Okay!" and then when they did it she would say "Thank you."  She said when they laid her down and put the mask on her, she pulled it off, thanked them, put it back on and fell promptly to sleep.

They said the surgery should be about 2.5 hours or so and that they would call half-way through.  The only blip in her care was that they forgot to call and about 2.5 hours later the surgeon walked into the room.  We must have looked panicked because she held up her hands and quickly assured us all was well.  Dr Hollister said that the surgery went well and that she was able to do everything that she had hoped to this time.  Katie will still need additional work on the ankle band and also on her right hand at some point but for now, she had released the bands on her right long finger and right pointer, released the band and separated the two toes on the right foot and taken half the band on the left ankle.  She didn't do a traditional Z-plasty on the ankle but had been able to do it in a way that she feels will be a little less noticeable later.

Eventually, she woke enough to be brought down to her room.  The nurse didn't want us to pick her up right away as they wanted her feet to stay elevated.  They hoped that would reduce swelling and the risk of bleeding.  I have to admit here, had she woken enough to ask me to pick her up, I would have anyway.  Luckily, I didn't have to risk upsetting anyone; Katie slept for several hours hugging her doll.  She would wake on occasion, just enough to see that we were there, and fall back to sleep.  The initial plan had been for her to stay overnight but they decided that we would be discharged that same day.  So we fed her a bottle, which she kept down, had a wet diaper to prove she was ok and bundled her up and left for home.  The drive is about 5-6 hours and she slept the entire time.  I have to say that I am not surprised.  They gave her 5 mg of Versed!  I only had 3 mg the last time I had a colonoscopy and I slept all day too.  (Was that TMI?)

Since we've been home, she has done very well.  She is having some pain.  She gets a little frantic and cranky when it is about time for her pain meds and today she asked Daddy to kiss her ankle but generally, she is doing very well.  She tried to walk a few steps yesterday during Jay's soccer game, yeah!  I want very much to take off the casts and look at the areas myself.  I have so far resisted temptation.  I hate that they used the old gypsum casts.  They are incredibly heavy and she is so tiny.  She should gain some muscle strength in the next two weeks.  October 27th, she will get them off.  Prayers for Katie and for mommy please until then.  :)

Katie's trip to Shriner's

Two entries this time ... one from early September and then one with more recent news. 

 9/2014
Katie went to Shriner's Hospital in Shreveport this month for an evaluation on her Amniotic Band Syndrome (ABS).  We didn't get the "all clear" that we hoped for this time.  Her ABS involves both hands and both feet to some degree.  Her most affected limb is her right hand but her left ankle and both sets of toes are also involved.  She functions incredibly well regardless of the changes, but the surgeon at Shriner's feels that she may have additional issues if we don't surgically release the bands.  The surgery will leave her in 3 casts (both feet and her right hand and arm) for a couple of weeks to allow healing.  We aren't looking forward to having this done but would hate to not take care of it now and instead allow it to worsen.  The surgery will not change her function at all really and of course, cannot give her back the missing fingers.  We have a niece that has been through this (successfully!) and know that while it won't be a lot of fun for her, it is the right thing in this case.

The Shriner's visit was very smoothly done.  They are set up only for children and everyone there, from the reception people, to the xray folks to the doctors, seem to truly enjoy the kids.  That is exactly why we are going to Louisiana for the surgery.  We know that there are wonderful surgeons locally, but this surgeon has been doing this surgery for more than 20 years and does lots and lots of kids with ABS.  It helps with the decision to know that she has been doing this frequently enough and long enough to watch kids grow that have elected not to have surgical intervention and those that have.  She seems very confident of her recommendation.  (Someone asked if we were going to LA to save money by using the Shriner,s and the answer to that is a definite "no."  It would be much cheaper in lost hours in the office and hotel bills to do it locally.  The Shriner,s used to not bill at all but that changed in 2012.  They still give free care to those that can't afford it, but thankfully, we don't qualify for financial aid.  Our only reason for choosing this route was so that we could be confident that a surgeon who has done thousands of cases like Katie's would direct her care.)  The down side to us going out of town for this is that we have no contacts there.  Having taught at the med school here in OK so long, we know a huge number of the docs personally.  It is nice when we can take advantage of that.  :)

On the Jaden front, we have had a good summer.  He did two sessions of swim lessons at the Y and made HUGE progress.  He started the summer loving water but definitely not in the face, and has ended the summer nearly a swimmer.  He is so proud of himself and just loves showing us that water in the face doesn't bother him anymore.  In his little kiddy pool or in the tub, he'll say "Look!" and then dunk his face.  I think if we would have had a couple more weeks of the pool being open, he'd have been able to actually swim. 

We've been to Hurricane Harbor, Six Flags, and the Zoo and as is typical for Jaden, he was thrilled to be at each of them.  He loves to travel and even if we just went somewhere and stayed in a hotel and then came home, he'd think it was an awesome trip.  He wasn't thrilled that we went without him to Louisiana with Katie, but that was mitigated somewhat by his alone time with his big sister.  When we got home, the house had been transformed into a tent city.  Time with sister is just more fun than time with mom and dad.

Jaden has been in Kindergarten a couple of weeks now and is adjusting fairly well.  He is generally a happy kid and that seems to be holding true this school year.  He has struggled a few days with not being able to get his work done during the school day.  I know that he must have been feeling frustrated one day because he decided to "whine like a dog" and bark at his teacher.  Oops.  Fertile imagination is great but not always.  :) He is still not educationally on par with his classmates, but at this point he doesn't seem to be aware of it.  He has made huge strides in the last few months, though, and I hope by the year's end, he will have closed more of the gap.  He loves his classmates and his teacher and so hopefully those things will help take some of the sting out of having to work a little harder than his peers.

We are seeing more of what we think may be a sensory processing issue with him with regard to noise.  When we first brought him home, he struggled with some tactile sensory issues.  This is really common in kids from hard places.  They typically don't get enough sensory stimulation to really learn to process it as an infant and child, and then we throw them into a whole new world of sounds and smells and feelings.  He wouldn't get dirty or messy when he first came home.  Finger painting or playing in the dirt was totally beyond his comfort zone.  That has improved dramatically, and Tim and I both just grinned when he dropped down in the dirt and started rolling in it the other day.  It was a joy to watch him have fun with the grass and dirt.  (Weird, huh?)  He and I have finger (and foot) painted several times over the last year and he has finally gotten completely comfortable with it.  There are still times he won't eat certain foods because either he doesn't want to pick it up or because he gags when it hits his throat, but he really has gotten mostly over that aspect. 

The noise issue has probably been there all along but we didn't notice because he wasn't often in noisy environments.  When he is in a noisy environment, his brain just sort of shuts down.  His developmental age seems to drop by half and his comprehension of what is being said to him plummets to almost zero.  The time this was demonstrated most clearly to me was when he started tumbling class.  It is held at the YMCA gym, which is noisy with just the kids and the instructors.  When some kids started shooting hoops on the other side, WOW! Jay just devolved right in front of me.  He had been doing okay but when it got noisy, it was terrible.  He doesn't act afraid or defiant, it is just like you gave him a shot of speed--instant hyper kid.  I'm sure this is occasionally a problem at school too; you don't get a class full of Kindergarten students together without some noisy times.  (If his tumbling teachers or Ms Bailey are reading this--again I apologize!)

We will probably have to consider having him evaluated by occupational therapy for some help on how to deal with this.  We try to remove him from the situation when we can, but there is not a good way to make tumbling less noisy, for example.  I considered pulling him out but a friend assured me that the tumbling teacher was ok with wild boys.  I did ask her to let me know if she felt he was a distraction. 

10/3/14

Right after I wrote the above blog post, Jay really started struggling in school.  He started having daily issues with sensory overload.  We have had him evaluated by Occupational therapy and he was officially given the diagnosis of sensory processing disorder.  We have had him in OT twice weekly and the school has seen some improvements.  I'm very blessed that my niece, Kimberly, is an educator for parents/teachers that are dealing with autistic kiddos and she was able to give us quite a bit of information and help.  I had done research previous to bringing Jaden home and was comfortable helping him deal with the sensation part of sensory processing and had been working on that with him fairly successfully. 

He has really progressed and is rarely "sensory avoiding" anymore, but unfortunately that seems to have "progressed" to sensory seeking now.  That means that his system feels the need to have near constant sensory feedback and so he spins, falls, touches or bumps into everything around him in order to focus.  It looks very much like ADHD at school but is actually very different.  If he gets lots of sensory input (thinks big bear hugs, spinning on a merry go round, swinging, or hanging from monkey bars) he is able to focus nearly like a "typical" kid his age.  The problem is that sensory feedback only lasts for about 90 minutes.  We have added all kinds of sensory equipment at home and spend time every morning before school jumping, spinning and swinging trying to prepare for the day.  His OT is very young and new at her job, but has been learning as she goes with Jaden.  She got to visit him at school and wrote up a report for her 2 hour visit that made me want to cry. 

Both his teacher and his OT seem to love him (which helps) but based on what the OT wrote, I'm glad I'm not his teacher.  We are trying to find ways to help him get the "sensory diet" (meaning the touch and vestibular input) that he needs routinely.  His teacher feels that he has definitely begun to show improvement since we have started OT and started being consistent with his home treatment, and she has been wonderful to work with him and to give him activities to do that feed his sensory needs when she senses that he is starting to head towards trouble.  She will have him spin, run, push against the wall, carry things up and down stairs ... all of which are recommended treatments for kids needing sensory input.

This has been an adjustment for all of us.  It is so hard to get the daily emails telling us his struggles for the day.  We just don't see these behaviors at home and so I can't even come up with good suggestions for the teacher on how to avoid these things.  We are such a tactile family that we hug and wrestle and tickle often, and I guess he just gets enough stimulation at home so that it isn't an issue.  But when he is trying to make it through circle time and table time and transitions at school, he just isn't always successful.  I have wished several times lately that homeschooling was an option for us.  Not because of the school, we are very blessed to have a good private school available to him that only has 13 kids in his Kindergarten class, but because he does so well when he is at home and I hate to know that he is struggling all day at school. 

I feel sad about this a lot, which I know is silly.  He isn't physically hurting, he has the ability to learn and he seems oblivious to the issues much of the time.  There are so many kids that have SO much more to overcome, I know that this really shouldn't be a big deal.  I'm sure I'll get there, but in the name of honesty, I'm just not there yet.  I considered not blogging about this but as this is a fairly common issue in kids coming out of orphanages, I know that there will be others who may need to know that they are not alone. 

I hope that as we learn and progress with this, we may be able to help others that are trying to figure out how to help their own littles.





Our next big event will be Katie's surgery.  She is scheduled for surgery on Tuesday, Oct 14th.  We are going to make a multi-day trip of this on the way down to Shriner's, going to a hotel with in indoor water park and going to Six Flags to try to get her some fun times ahead of her triple-cast time ... we are NOT looking forward to her being in a long-arm splint and having both feet splinted at the same time! 

She is scheduled to stay in the hospital for a day and, if all goes well, we are going to be driving back home on Wednesday the 15th.  Then we go back the next week for her post-op visit.

Prayers that (1) the surgery goes well, (2) that she handles the post-op period well, and (3) that the travels are smooth are requested and appreciated.