Seattle Children's Evaluation

December  17 & 18, 2012

We are in Seattle to get B’Elanna evaluated at the Reconstructive Pelvic Medicine Clinic at Seattle Children’s Hospital.   We are staying at my Mom’s house, so B’Elanna had a bit of fun playing with Grammy’s dogs Rascal and Charlie… and playing with their Kennel.   Poor Posideon… who knows what he did to get put in the kennel… but he looks so guilty here.  Hahahaha.

We also took Posideon to get his checkup and shots at our Vet (yes... I take my dog to a vet 2 states away from where I live.... I have been seeing this lady since 1996 and LOVE how she is with my four-legged babies!)   OK, just to set up the video, I forgot to bring my lead for Posideon... so I just grabbed one of my bungy cords to use.  Yes... the is THAT cooperative of a dog!!

On Monday, B’Elanna had two procedures scheduled.  First a sedated Voiding Cystourethrogram (VCUG) to check her Bladder, urethras and possible reflux to the kidneys, followed immediately by a water-soluble contrast Enema to determine her rectum and colon anatomy and see if there are any fistulas.  They gave her Versed as the sedative… it didn’t knock her out… just made her a bit loopy AND she acted Drunk afterward.  Hilarious!!  

B’Elanna hasn’t started to “play” yet, so I didn’t think the Child Life Specialist would really work, but she was great with music toys and a portable video player.   We had a translator  when the Nurses were giving B’Elanna the Versed, I just had her explain to B’Elanna that the medicine would make her feel funny, and then she was going to have a procedure that might hurt, but that Mommy would be with her the entire time and she would feel better afterwards.   I didn’t feel it was necessary for her to be there for the actual procedures.

On Tuesday, we had to be at the hospital VERY early.  Today B’Elanna was anesthetized for an MRI of her spine to check for Tethered Spine, followed by a Vaginoscopy to examine her vagina and cervix and to see if they could see her uterus and ovaries.  The General Surgeon also went in to examine her external anatomy and to do an electrode stimulation test to see how her anal sphincter/muscles react.    Sitting out in the waiting room waiting was EXCRUCIATING!!   I knew she would be fine… but still!! 

Once she was in Recovery, the GYN came out to the waiting room to talk to me.  She had GOOD NEWS!!  From what she could determine (mostly from lack of scarring) B’Elanna had a LOW PERSISTANT CLOACA had her cervix looked GREAT.  B’Elanna is too small to determine if her Uterus has any deformities…. BUT she does have one and her ovaries!!  She said all of this bodes WELL for B’Elanna to have sensation, the ability to have non-painful intercourse and have children!!  Because of the Persistent Cloaca she will have to have a Cesarean Section if she has kids.   Once she hits puberty, she will need to have more Ultrasounds and MRI’s to evaluate her Uterus construction AND to determine if anything has changed once hormones kick in.

After the GYN came to talk with me, I had to wait for about another 30 minutes before I was allowed to go back to B’Elanna.   They had put an endotracheal tube down her throat, so she sounded rough and gruff and her throat hurt (of course).   

 

While we were waiting for B’Elanna to wake up more and drink some fluids… the nurse came to tell me the Doctors had ordered up a Renal Ultrasound for B’Elanna.  We had one done in Missoula, but the video never made it to Children’s.   So they released us from Surgery before B’Elanna was “completely” awake… but we were just going down the hall for the Ultrasound… so we were safe.  We got the Ultrasound done and then we had to be at the Clinic appointments.   Yeah… no lunch, but the receptionist gave us some crackers to tide B’Elanna over.  And then we started the Clinic appointments… we started at 1:30 and didn’t get out until 5:00pm and then had to wait for the Pharmacy to get the prescription together… so we didn’t leave Seattle Children’s until about 7:30pm!!

OK… so the Clinic Appts…

1.        We met with the Urologist.  He said her Kidneys, Bladder and 3 Ureters look good (yes 3… she has two coming out of her left kidney).  He said they don’t see any evidence of scarring… so she has either had None or very few kidney infections or UTI’s!!  No Reflux!!! YEAH!!   He said with the results of his tests B’Elanna has a VERY GOOD chance of attaining Urinary Continence.  He stressed to NOT push Potty Training until her ability to have Bowel Continence is determined.  He said that girl with Persistent Cloaca that do attain Urinary Continence but not Bowel Continence… often just give up and regress.   He said IF B’Elanna shows/voices interest in sitting on the Baby Potty to let her.  This is good since she is my constant shadow and copycat (even in the bathroom)… so she is already wanting to sit and go.   He said B’Elanna will need Annual Ultrasounds to watch her kidney function and to give her about 2 oz. of Cranberry juice every day.

2.       Next the GYN popped in to see if I had any new questions.  I didn’t.  She said she would check in with us when we come back to Seattle Children’s for the annual (poss. Biannual) visits.

3.       Then we saw the General Surgeon.  I had a whole SLEW of questions for him.  I have enough knowledge to know that what I was seeing on the Contrast Enema the day before was NOT NORMAL.   He walked in, introduced himself and then said “NO MORE MIRALAX!!”    I asked him if he could explain WHAT had been done to B’Elanna over the last 2 years?  Did she have a colostomy, because I can’t find a scar and how could they do the surgery without a colostomy??  Is her Anus too close??   I also had a few questions about B’Elanna’s constipation, diet and medications… he said the Bowel Management Nurse would go over that.  

Then he showed me the Contrast Enema and explained what I had seen as “NOT NORMAL” yesterday… basically her Rectum (not Sigmoid Colon) is 3-4x the size it should be.  He said this is from her being constipated for the last 2.5 years!  This means that IF she were able to achieve bowel continence she wouldn't KNOW/FEEL she needs to Go UNTIL she is already constipated.  The picture below isn't EXACTLY what B'Elanna has OR the surgical option... but it is the best picture I could find.

So how is this fixed?   The objective will be to reduce/shrink the size of her rectum.  This can be done two ways: 

1.)  Daily Enemas  - these are NOT fleet enemas… but more like the old fashioned kind with the old red water bottle… but more involved  OR

 2.) Create a diverting Colostomy.    B’Elanna would then be reevaluated after 6-12 months to determine if her rectum is responding appropriately. 

Next, he showed me a video he had recorded during the electrical stimulation of her anal muscles.   IT WAS GOOD!!   She has great floor muscles and her anal muscles contracted wonderfully.  BUT… it also showed that her current anal opening is in the incorrect spot and she has a Prolapse. 

So how is this fixed??  B’Elanna will need to have a corrective anoplasty.

So WHEN will all this happen??   First the Doctor is going to consult with the Cincinnati Colorectal Team for their opinion.  Second, we will either do the Enemas or Diverting Colostomy for 6-12 months.   Third, when she is evaluated after 6-12 months, they will decide if her rectum has reduced enough in size or do they need to surgically reduce it.  Fourth, is the “final” surgery.  During this surgery – if she has the colostomy – they will surgically reconnect the two ends of the colon, surgically reduced the size of her rectum (if needed) and do the corrective anoplasty at this time.  If she does not have the colostomy – they will surgically reduce the size of her rectum (if needed) and do the corrective anoplasty.

After he was done explaining the tests and her options, he said he believes B’Elanna had a LOW Cloaca or a Rectovestibular Fistula.   Since he had not seen her before she was repaired AND the China surgical notes are not very detailed.   He said the #1 question with Persistent Cloaca is:

“What is the Potential for Bowel Control.”

GOOD  POTENTIAL                                                      BAD  POTENTIAL

Low lying defect   +++                                          High Defect
No spine anomalies  +++                                       Spine anomalies
Good Surgery                                                          Bad Surgery  ---
Sensation                               ???                             No Sensation
Motility                                                                     No Motility  ---
Anal Muscles Good  +++                                         Anal Muscles Bad

“Incontinence??”

Pseudo incontinence  +++                                           True Incontinence (would be bad)

Treatment??

Bowel Management Constipation                             Enemas à Antegrade Continent

(This would be after the surgery)                                                   Enemas

4.       Lastly, we saw the Bowel Management Nurse.  She stated again NO MORE MIRALAX.  For now on B’Elanna will have a routine of Liquid Senna and Citrucel each evening.  Each day… I will need to evaluate if B’Elanna’s stools have been “good” or “bad”.   If “good” keep her on the dose.  If “bad”, give her a Pedialax Enema and increase her Senna dose.   Then the next day, repeat the above routine.   Email the BM RN to let her know how things are going and let her know if I have any questions.

We finally got done and then had to wait over an hour for the Pharmacy to fill the liquid Senna prescription.  B’Elanna got a little bored.

First REAL Snow!!

December 7, 2012

It took FOREVER to arrive this year... but we finally got a REAL snowfall.  So, of course, I bundled B'Elanna up in her snowsuit and got a couple of pictures.   It was only about 7-7:30pm in these pictures... even though it is SO dark.

 

First Christmas Tree

November 25th, 2012

While B'Elanna was taking her nap, I got my new Christmas tree put together.... literally JUST put together when she woke up... so None of the branches had been fixed yet or any ornaments put on the tree.  Here is a video of her reaction.... it is a little long... but the end part is the BEST.

Playing with Grammy's dogs

November 25, 2012

The day before I received B'Elanna in China, I got an update.   It said she was SCARED of dogs.....

I think she has gotten over that fear!!

I LOVE this picture... It looks like she is squishing Rascal....
But he was just licking the air.

 If you watch the video to the end... you hear the little dictator come out when she is telling Rascal to "Sit Down!!"

November 2012 Adventures



On November 9, 2012.... we had a skiff of snow with a forcast for more... that never showed up. So I packed B'Elanna in her snowsuit for the first time.

 



A few days later, we went to visit Nai Nai over Veteran's Weekend and B'Elanna got to have fun playing games with Mommy and playing with Nai Nai and her toys AND her cat tree!

 

Oh SO Proud of Herself!!

 

For Thanksgiving, Grammy drove over from Tacoma.  It was the first time B'Elanna had seen her since we got home from China.   It took a few minutes, but then she remembered and warmed back up to her.   These pictures were taken on Thanksgiving and Black Friday. 

 

A person my mother new gave her a couple of clothing items for B'Elanna.   This REALLY Warm toddler cover and this really cute vest Grammy is showing B'Elanna how to model for Nai Nai.

 

 

Cheesing it up with Grammy (and modeling one of Grammy's flowers she is making!)...

  

 

Black Friday came a bit early for this Girl!!!

 





But that didn't mean she wasn't up for a bit of Swifter Wars with Nai Nai later in the day... 

 

Pediatric Surgeon Appt

Today we had our appointment with the Pediatric Surgeon here in Missoula, Montana.  She was a really nice lady, older with a wonderful British accent.  I had sent her ALL the information and pictures I had been given on B'Elanna's surgery in China, and I had sent her a Bunch of questions before our appointment.  She came in and started asking all sorts of questions about how B'Elanna has been doing both physically and socially since I got her.  Her nurse was in the room and kept B'Elanna entertained with toys and Bubbles, so I was able to concentrate on talking with the Doctor.... and she was also able to observe how well B'Elanna moved around the room, interacted with the nurse and the toys, listen to her talk (eventually) AND observe how intelligent she is.

She and I discussed the need for a getting a genetic test done to see if there is anything else going on with B'Elanna that we can't see and isn't presenting itself.   She said there really isn't a need for that.  Cloaca is not a genetic disorder, but an interutero development issue and IF any of her other systems were affected... it would have presented itself already.

She educated me that with Cloaca, we also need to consult with a Urologist for all the tests that B'Elanna is going to need AND she recommended that she be sedated for most of the procedures.   I told her that was perfect.... I was going to request that!!

I talked with her about these weird diapers B'Elanna keeps having.... Urine diapers that smell like stool and sometimes have a "sandy-like" substance in them.  I told her I am concerned about a fistula or something.   I told her (and showed a newly collected sample, hehehehe) about the dry stool diapers B'Elanna has been having... even though I am giving her the Miralax and as much apple juice and water I can get her to drink.  She confirmed that she is a bit dehydrated... but that I am doing everything I can be doing.   She said to keep up the Sweet Potato/Apple Juice/Water regiment I have had her on.  She said I could try increasing the amount of Miralax I am giving her, it won't have any longterm negative effects on her intestinal tract and it isn't addictive...  it will just help pull more water into her system. 

She did her exam of B'Elanna.   She explained how the her surgery would have been performed.  She said she thinks she only had one surgery... where they created the Urethral opening and Anus at the same time.  She said all of her orifices healed well and are a good/great size.  She said there are not any external fistulas and she does not see a need any further surgery to move the anus.  (I had thought it had healed to close to the vaginal opening).   We discussed what I have been calling a "hemorrhoid"... she confirmed that NO it is not a hemorrhoid, but a part of the intestines that had been brought down to create the opening.   She said there is nothing that can be done about it and there is a good possibility that as she grows it will "go away or be pulled back in or stay."  Since she had it when I got her in China, she said B'Elanna probably had to strain during a bowel movement and that is how it got started.... just like a regular hemorrhoid.

So.... what can the Doctor do for us.   Well, we have a few tests we need to get completed so we can know what is happening INSIDE B'Elanna.  They gave me a kit (bag) to collect a Urine Sample... this is going to be interesting.   They are scheduling a kidney ultrasound for this week or next... depending on if we need Tricare Authorizations or not.    She said needs to consult with the Pediatric Urologist about the tests he would also recommend.  The difficulty is he only comes to Missoula every other month and he is full for December, which means we couldn't see him until February.  I said I am willing to travel to Seattle, depending on Tricare approval, to get an earlier appointment.

OK... so tests needed:
* Urine Sample
* Anesthetized Kidney/Bladder Ultrasound
* Anesthetized VCUG  (Voiding Cystourethrogram)
* Anesthetized Barium Enema
* Anesthetized Spinal MRI - to look for tethered cord

The Doctor wants to try and do most of these at the same time and let me know that she would be in the hospital overnight.  Once we get these tests, we will be able to determine what we need to do next.

I asked her if there is a way to test the nerve conduction, she said not really.  She emphasized that to not start/push potty training right now.   Her body isn't ready and until we get some of these test we can't know IF/WHEN it will be ready.   She said most of these patients aren't ready until they are 4-5 years old.... but if she wants to sit on a toilet like all the other kids at the Preschool that is fine.

After the Pediatric Surgeon appointment, we had an appointment with B'Elanna's Pediatrician to get her second round of Immunizations.   Poor kid go 5 shots!!  Afterwards, we had to go back to the Preschool to drop off some paperwork and let the Director know some of the things the Surgeon had said.   By the time we got home, B'Elanna was walking like her poor little legs were killing her.  :(  :(  :(   Needless to say, she was a bit cranky tonight and had been a bit restless and crying out tonight while she is sleeping.

UPDATED MEASUREMENTS:
Weight:  25.2 lbs    (Gained 2.7 lbs since Sept. 3rd)
Height: 34 inches   (Gained 0.5 inches since Sept. 3rd)

Well... off to try and collect a urine sample!!

Love Letter: 32 Months

November 14, 2012

My Dearest B'Elanna,

This month you had A LOT of changes!!   You are so much happier, sillier and more settled this month.  You have had significantly LESS temper tantrums.  Mostly you have started to challenge eating different foods... some days you will eat something, the next you won't.   Typical 2 year old stuff.   

You are laughing and giggling SO MUCH!!  Life in the house this month has been a Joy.  Here is a video of you at NaiNai's house. Over the last 2 months, you have gone from avoiding the Ladybug pillow, to lying on it, to jumping on it, to....

Your vocabulary is growing by leaps and bounds.   So many people have been commenting on "How well you speak!!".... perfect strangers even!!   There are a few sounds we are still working on, mostly anything that involves you putting your tongue on or through your teeth.  I am hoping when we meet with the Developmental Assessment Team at the end of November, we can get a few sessions of Speech Therapy to help you beyond what I know how to do. 

You are also able to concentrate on projects like putting puzzles together (with less frustration), you can listen to stories for a little bit longer than one month ago (you are starting to like books), and as you can see in this video your fine motor skills are even better than Gotcha Day!!

You had your first Haircut/Trim.  You Did Not care for it much.  You screamed and cried through most of it.  Then as we were leaving... you said a VERY LOUD and Happy "Bye-Bye" and all the Beauticians laughed.

You had your First Halloween!!  You were an adorable Lady Bug.  You didn't go out trick-o-treating, but you really enjoyed greating people at the door and saying "Hello!! Hap Baleen!!!  Bye-Bye!!"

 

You started a new preschool on November 1st... not by my choice... it is the only one that can receive the Military Child Care substity.   They quickly made some of the same observations about you that the Pass It On Learning Preschool did.... you are very affectionate and caring towards the other children.  You like to give hugs and if you think someone is upset or if you have hurt someone ... you become upset yourself and start trying to give them hugs and patting them.    There are a few things about this new school that I don't like... but the Director is trying to work on getting things fixed.  One of the biggest issues is that you are 2.5 years old in a classroom with 4-5 year olds, and the curriculum is SIGNIFICANTLY over your head.   I feel that you have been languishing in a Daycare, when you are supposed to be learning in a Preschool.   Because of this discrepancy, I have started to augment with things here at home with a YouTube Video called "Apple apple a a a" to learn the phonetic alphabet and some videos on colors and shapes that I received as an Adoption Gift.

November is National Adoption Month.  You are the Purest Joy I have every brought into my life!  You are so Smart and Beautiful and the lightLIGHT in each and every day and make it a pleasure to wake up every morning.  This month you have started to cuddle up to at night and in the mornings you climb on top of me, give me a hug and laughing say "Good Morning!!"

I love you more and more every single day!!!

Love,
Mommy

First Concert!

Saturday, November 3, 2012

This morning B'Elanna went to her first concert... Sesame Street Live: Elmo's Super Heroes. 

I believe she had a good time. Even before we made it to our seats... I was taking photos of B'Elanna on some of the local Mascot statues.

Once we made it to our seats.... little miss had a hard time sitting in the chair.   It kept trying to EAT her.

After that, she spent most of the show sitting on my lap.  When I was downloading the pictures is when I realized... I hadn't taken ANY pictures of the show, just of B'Elanna!!!    This is the one and ONLY picture I took of the show... the empty stage!

This was her reaction when the show first started.  As you can she, she wasn't sure what was happening...

 



Once she understoond what was happening, she started to enjoy it.  Smiling, clapping, getting jiggy... even clapping when she was eating a snack.



 







During the intermission, we went out and ran the hall to wear off some energy.  B'Elanna also enjoyed looking at the Grizzly and the U of Montana Mascot, Monty.




You are BIG...





What BIG TEETH you have!!




Ha, Ha... you can't get me!

After the show, I got her this spinning, light-up Elmo thingy and a Sesame Street Ball.




Checking out her new toys....

Analyzing the spin!!

Checking out her new toy at home where it is dark and she can see the lights light-up!  FYI... as you can see B'Elanna was REALLY in need of a nap by the time we got home.




 

First Halloween

Today was a big day for B'Elanna.  It is her FIRST Halloween... she dressed as a Ladybug!!   It is also her last day at Pass It On Learning and she started at Kid Central.  This is the only preschool in Missoula that the Military Child Care will substidize.   This school is for 2.5 - 6 year old kids and normally they do not take kids in diapers (or they must be in the Potty-training stage), but they decided they would accept B'Elanna because of her "special circumstances" of recently adopted AND her medical condition are causing her not to be ready for potty training right now.  

Ride'em Doggy!!




Will you FINISH already!!

Still won't smile when anyone but Mommy
is holding the camera!! YEAH!!

Horrible Picture... but the only one of the two of us.

B'Elanna and I went trick-o-treating at a local Retirement Center with her new Preschool, and then we went back to the school and had lunch with her new class.  Then the class was going down for naptime, so we left and I brought her home for her nap.   During that time, I had time to reflect on our time at the school... before we go back tomorrow.   Little things just kept needling me:

• All kids, no matter how young pass the standard size platters and bowls of food and serve THEMSELVES... including pouring their own glasses of milk from Pitchers.   I know a lot of people are thinking... No big deal, it's good for kids to learn things, but B'Elanna has already had to learn/do TOO MANY adult things.... it is her chance turn to be a child.  So, needless to say, this "server yourself" policy just does not sit right with me.  I DO NOT think that a 2.5 year old should be responsible for dishing up thier own food and drinks... this is an ADULTS job. 
• It was bugging me enough that I went back to the school and talked to the director.   She said that according to the CACFP rules that they fall under the children are supposed to be learning to be self-sufficient while in their programs.   I told the director... that phrase is upto interpretation.   I interpret that to mean, a 2.5-year-old can be served their food, but be encouraged to eat with a fork and spoon and drink from a non-lidded cup.  I told her, B'Elanna was already parentified in China and I DO NOT want anymore of her childhood taken from her and she needs to learn that ADULTS are here to care for HER not that she needs to RELY on herself at this stage.   I told the director that I was sorry for being "That Parent" this early, but this is EXTREMELY important to me.  She told me she works as an advocate for some children in the Missoula community, and she understands that I am B'Elanna's ADVOCATE.   I told her EXACTLY and I didn't want to wait 6-months to find out this isn't working... if this can't be accomodated, then I wanted them to sign the form for Military Child Care telling them they couldn't accept B'Elanna and she can go back to her  previous Preschool without an interuption.   The director said, she thinks this can be accomodated... that she would take B'Elanna for a diaper change while the other kids are dishing up and then when she comes back to the room her plate/cup would already be ready for her.   I really like this director... by the time she was done talking with me... I had really calmed down!!
• The other thing I mentioned to her was that I had noticed that A LOT of the kids in the school have Lazy Speech and I would like the Teachers to please correct B'Elanna if she starts slipping into those patterns.  I also let her know that I am having B'Elanna evaluated at the end of the month at the Children's Development Center and am hoping she will be referred for Speech Therapy!

I know B'Elanna will be fine in this school and in her previous school and this is ME having the issues and concerns, but meeting with the director and getting this addressed ASAP made me feel better (more comfortable leaving her in their care) and now I am ready for us to do our half-day tomorrow and the next day.

Tonight, B'Elanna loved greeting everyone at the door for Halloween.   Here is a video I took of the phrases she kept saying to EVERYONE...

She is saying "Hap Baleen" for Halloween.   I think it is so CUTE for a kid that just started saying the word TODAY!!