Gabby's 2017 NYC visit

Dr. Alam notes

Dr. Alam seems happy with Gabrielle's progress. This is the first time he has laid eyes on her since 2015. He said he is pleased with her growth... this is the first time we have ever heard these words come from his mouth in 7 years. However, he is going to have his dietitian call and go over Gabrielle's daily diet with us and give us tips on high calorie intake items and high water content foods. He says that she needs to pack on a little more weight before her next surgery because as with all surgeries she will loose some. The high water content foods are to help hydrate the bladder. The way Gabby's bladder is constructed makes it retain bacteria because there are all kinds of creases for the bacteria to catch on, the more water she drinks it will help keep her bladder flushed. This will be step 1 of preparation for her next surgery... increase calories and water.

          *side note: she does currently have an overgrowth of bacteria present. Dr. Alam took a sample and is having in cultured. He will call or text me early next week with results and treatment plan.

Step 2: spring 2018 appointment. The purpose of this appointment will be to teach us how to catheter Gabby at home. Using the catheter to not only empty her bladder nearly completely but also  to perform gentamicin bladder flushes. The bladder flushes are to help make the bladder as healthy as possible to prepare her for upcoming surgery in the summer of 2018. Dr. Alam wants us stay 3-4 days just to learn how to properly cath her... if for some reason we are not able to perform this everyday without her having pain then she will go in on the 4th day for a quick surgical procedure to insert a supra pubic tube in the urethra. Using that tube we will then be able to perform her bladder flushes. He said that if he ends up having to insert a Supra pubic then the surgery must happen within 3-6 months of placement. However, if we can successfully perform cathetering with out it then the surgery can be put off as needed. He will also be putting her back on Ditropan. I can not tell you how much I despise the drug Ditropan! Last time she took it in 2013 it turned her into a completely different child... she cried, moaned or screamed constantly. Being that I work in the compound pharmacy field I asked if we could just add the Ditropan to her daily gentamicin flushes ... this would help bypass some of the systemic side effects and get the drug directly to the site. Unfortunately, Dr. Alam said that Ditropan flushes were not an option as the drug does not perform well directly in the bladder... bummer. So, I have approximately 6-9 months to teach her how to swallow pills so that she can take the extended release form which supposedly has fewer side effects. Wish me luck! This trip may also include another ultrasound and possible cystogram/cystoscope.

Step 3: surgery! The goal for this surgery is the give her a "mitt" or mitrofanoff. This will be a small hole located in the abdomen that we will catheter her through, to empty her bladder several times a day. This will be used the rest of her life or until modern medicine comes up with something different. He will also be augmenting her bladder with a piece of her colon to make it bigger to lessen the frequency of emptying. Also, he will be moving the ureters. Ureters are what carry the fluid from your kidneys to your bladder. Due to her abdominal malformations at birth she has what they call a pelvic kidney... it is lower that it should be in the abdomen and that allows kidney reflux. Kidney reflux is when the urine backs up from the bladder back into the kidney. It can cause kidney infections and kidney stones. Moving the ureters will hopefully help prevent these issues. He will also do some internal work with her Fallopian tubes, cervix, and inner vaginal area. This will be the most involved and difficult surgery he has performed on her to date or that she has had by any other surgeon. It will last as long as 16 hours. Just being put under anesthesia that long brings its own list of side effects and concerns. Anesthesia is probably one of my biggest concerns with this surgery. It takes my sweet angel and dims her light from within. It messes with her beautiful mind and I hate that it is absolutely necessary for her to have it. The longer she is under the longer it takes for her bubbly little personality to come back and it absolutely kills me every time.

I have all the faith in the world that Dr. Alam will take the complete best care of Gabby that he can. He speaks of her like he is one of his greatest accomplishments.   He beams with the warmest smile when there is good news to report and is somber when the occasion is called for. He makes no false promises and doesn't deliver false hopes. I can not say enough about his love and passion for the cloacal exstrophy kids that he works with. He devotes his entire life to these kids and thank god everyday that he was the urologist assigned her case when we were at Cincinnati Children's 7 years ago. We are a give it us straight family especially when it comes Gabby... gives us the bad with the good. We will trudge through it together and come out stronger on the other side using God as our tour guide.

Fun note: instead of driving into mid-city New York today Dr. Alam suggested to the train. So we took the train from Jersey to Penn Station and then a taxi to 51st street where the Columbia clinic is located (right across the street from Radio City Music). First train ride EVER and the girls loved it, they were not so keen on the taxi cab though. Then after our appointment we took another taxi to the Circle Line Liberty Tour. This is a tour boat that takes you on an hour long tour of Hudson River harbor and goes around the Statue of Liberty. The girls were so excited to see the statue. Gabby talks about it all the time since she learned about it in 1st grade this year. Then when we finished we walked about 20 blocks back to Penn Station to take the train back to Jersey. It was a great day!

Lastly... thank you so much to Bart's Uncle Mark, Aunt Darlene and cousin Jason for making Jersey feel like home. We so appreciate your hospitality and enjoy spending time with you guys and that the girls will get to this time with y'all. Thank you everyone for your continued support and prayers. They mean the world to us and what keep us pushing through.

HAPPY 6th BIRTHDAY GABBY GIRL!

You know, Bart and I waited 6 years before we (or rather I) I was ready to have children. In the summer of 2008 we got it… our first positive pregnancy test after about 9 months of trying. I was scared to death, was I actually ready to be a mother? I scheduled my first appointment to see the doctor at 8-10 weeks but by the time the appointment arrived our precious baby had not been able to survive. My doctor told me to wait a few months and start trying again. Almost exactly a year later in 2009 we found out we were expecting again. This time I had no fear in my heart. I knew I was ready for this and Bart, well Bart had been ready since 2003 when we got married, lol. I scheduled my appointments and every month I would go and get to hear that precious heartbeat. I couldn’t wait for that 20 week ultrasound to find out if we were going to have a little boy or a little girl. At the time I wanted a little boy so bad I couldn’t stand it. Finally, it was ultrasound day! This was it! Bart and I went in to find out if we were having that little boy. The appointment ended very differently than we had hoped and even anticipated. During that appointment they were not able to identify whether we were having a boy or girl… no big deal the baby just wasn’t in the right position. However, as the ultrasound moved along the ultrasound technicians’ voice changed, her smile disappeared and turned more into a look of concern. Bart and I began to get worried. The technician left the room for a brief moment to speak with our doctor about what she had found. When she came back she explained that she had found a few abnormal things during the ultrasound and that we should go to the Dr. Gautreau’s office and wait for her there. It seemed like an eternity before Dr. Gautreau stepped through that doorway. We were told that the baby I was carrying would be born with an omphalocele. For those of you who haven’t heard of this birth defect it is actually fairly common. It happens as often as 1 in every 1000 live births. That means today alone upwards of 350 babies could be born with an omphalocele. An omphalocele, is a hole in the babies’ abdominal wall that allows the organs such as the intestines, kidneys and sometimes the liver protrude out into the umbilical cord. We were told that we need to see a maternal/fetal specialist and that they would schedule the appointment for us as soon as possible. Dr. St Amant our maternal/fetal specialist is one word…. AMAZING! Over the next 8 weeks or so he sees me for ultrasounds regularly and researches tirelessly to diagnosis what he has told us is a baby boy! During this time we learn that omphalocele are commonly as sign of Down syndrome and he wants me to have an amniocentesis to do some genetic testing for Down syndrome and trisomy 13, 18 and 21. He also request a gender test to confirm. We have to wait a week for the results… it was seemed like an eternity. It is now December 2009. Surprise!!! You are having a girl! Second round of news… no chromosomal defects!!! That is great news but he notices something else during our ultrasound. Our little girl never changes position, so the next possible diagnosis is Body Stalk anomaly. A body stalk anomaly is a baby that has attached itself to the placenta wall. It will be a baby born that will not survive as there is no way to separate the baby from the placenta. We will schedule and have a fetal MRI performed to get a definitive yes or no on the diagnosis. This is the first time I remember the word abortion coming up in doctor’s appointments. The fetal MRI goes on with no problems but we have to wait until after Christmas and New Years to get the results. This has to be the worst month of my pregnancy for both Bart and myself. We struggle to hold on to our strength and faith not knowing what the New Year will bring. Our first appointment of 2010, brings good news… a diagnosis! Our baby girl, to be named Gabrielle, does not have body stalk anomaly. She will be born with OEIS. Again, abortion is mentioned and Bart and I don’t even acknowledge the notion. Information overload begins, research, meetings with surgeons and pediatricians. We schedule a delivery appointment via C-section for April 8, 2010 at 38 weeks. The day of my 36 week appointment arrives and I awake with cramping. I call and they tell me to come to my regular appointment that afternoon unless the contractions get closer together. So off to work I go until my 3:30 p.m. appointment. The appointment brings news of 3 cm dilated and a baby on the way. At 6:08 p.m. Gabrielle cries for the first time. I barely see her before she is whisked away to another room to be looked over by a team of nurses and doctors. They come and get Bart and bring him to see her and then bring her in to me. I get to hold her for a few brief moments before she heads off to the NICU. It will be the next night before I see her again because I can’t hold any food down. Finally on March 30th, in the NICU of Womans Hospital Bart and me both get to hold her for more than just a few moments. On the afternoon of March 31^st, the real adventure begins.

Just a few pictures of Gabrielle over the last few years

Fast forward 6 years to today. It is this precious little girls 6^th birthday…. 6^th?!?!?! This can’t be for real… can it? All of that happened 6 years ago and it feels like I just blinked my eyes and we are here. We are in present time where there is a little 3 year old sister and Kindergarten and daddy daughter dances. There are funny little faces and even funnier things that come out of her mouth. There are times I think that I might choke her because of the sassiness but in the same moment I am proud of her for trying to get her point across. There are those dreaded UTI’s, surgeries and no weight gain. But they are just dots in a miraculous life. They sculpt her and mold her BUT they do not define her. There have been amazing teachers, doctors and nurses along the way. They have been moments questioning if we made the right decision on switching doctors and hospitals from New Orleans to Cincinnati and again to New York City. Many times I am so proud of her I feel like I will literally burst with pride. There have been family, friends and parish that have backed us up and helped us along the way. This year has been jam packed from graduating pre-K to starting Kindergarten to her first dance and almost an entire year free of UTI and surgery.

Bart and Gabrielle before the Father Daughter Dance 2016

My little princess.

It is with incredible pride, happiness, joy, boastfulness that I celebrate this little girls 6^th birthday! There were days of darkness where I questioned God… how far will she come? His answer… just watch and see. She holds the answers. She will go as far as you encourage her to go. She is as timid as a rabbit in most moments but as ambitious as a fox in others. Just when you think she might not be able to do something, she does it. She will do it her own time not yours but keep pushing her, encouraging her. Watch her and see. She will surprise you. She will make you wonder why there were days of darkness when there is so much light that surrounds heart it could blind you. She will teach you to be a better person, mother, and friend each day that she is on this earth. She is my test for your faith.

I wonder some days what is going on in that little brain up there...

My only question now…..

What does tomorrow hold?

There's a first time for everything

Hello all! I know it has been a few months since my last post and I have several things to tell you all about but will try not to take up much of your time.

First and most important Gabrielle has started Kindergarten!!! I can't believe it, I really can't. I can remember the day she was born like it was last Friday, how can she possibly be in "big school" already? So lets see what I can tell you about. We have gotten to meet her teacher, Ms Krouse, a few times so far this year and I absolutely love her! She is very sweet and enthusiastic and the biggest thing is that Gabrielle loves her too!! Second to Ms Krouse my most favorite person at the school so far has to be the school nurse, Ms Millette. She has made this transition into elementary school a breeze and has helped Gabrielle be more comfortable. She has trained her co-workers to take top notch care of Gabrielle and I couldn't be happier. Gabrielle has been doing great on all of her class work and homework. Every afternoon when she gets home, she and Bart sit down and do her homework and review her sight words. Then in the evenings once I am home sometimes she will try to read books with us a bedtime. Right at this very moment as I type that is what I am hearing in the background... it makes my heart sing! Yesterday she got to participate in the PBIS school party because she got straight A's in conduct since starting school. The only downfall with starting school is that with a new school comes new germs and unfortunately she has had strep throat pretty much since she started school. Yesterday, I took her to see a ENT in Baton Rouge. She looked at Gabrielle's tonsils and said that she didn't think they were currently infected but that they were abnormally large. Dr. Scallan suspects they have been large since birth and that with each strep infection they get larger. She asked me several questions like does Gabrielle snore and does she gag when trying to eat. She does gag quite often even when not eating, sometimes she will look up at something high up and gag. The doctor said that the removal of her tonsils and adenoids will do nothing but benefit her both from reduced infections to eating better. She is scheduled for surgery October 26th... so there goes our surgery/procedure free year. We are hopeful and praying for a quick recovery so that she can be out trick or treating on Saturday night.

Gabrielle's first day of Kindergarten

Just an update on the rest of us Himels. I, Selena, am doing just fine health wise and have started a new position at the pharmacy where I work. Next summer I will hit my 10 year anniversary with the company I work for and still love it just as much as the day I started working for them. Avery is becoming a big girl herself. She has moved up to the 2 year class at daycare and is potty training. It was a rough start but with lots of help from her sweet teacher Ms Kasyn she is getting there. Lastly would be Bart and he and I will both be needing your prayers coming up. For quite some time now Bart has had issues with his back both his thoracic and lumbar. He has been diagnosed with degenerative spinal osteoarthritis in his spinal column. His lumbar area has continued a steady decline and is to the point where it requires surgery. On October 15th he will go in for surgery to repair a disc that is bulging into the space that is reserved for the nerves in your spine. Lately the pressure has been off in his spinal column also causing headaches and nausea. The plan for surgery is the remove the problematic disc and replace it with an artificial disc and to also room for it to fit correctly in the space where it should go. The disc itself will be held in place by 2 rods and some screws. The recovery will be anywhere from 6 to 12 weeks. Please pray that he gets no infections and recovery isn't as painful as we are anticipating. I'm not handling the thought of this surgery as well as I would like. With Gabrielle's surgeries I have always seemed to be able to prepare myself to handle them. I always know that I have to be strong for her. Bart is my back bone, my crutch the one in my life that I have turned to for the last 15 years. He is my strength, he is the major provider for our family and I can't imagine what he is about to go through. I love him with all my heart and he is my best friend. Please pray for my heart to acceptance and that everything is going to come out ok in the end. I know he is going to be in good hands during the surgery.

Bart and his sweet girls all decked out for the LSU game

OH MY GOODNESS!!! I almost forgot! Along with Gabrielle's list of first things happening to her... she also got to take her first trip to a beach with myself, her nanny Kate and Avery. And while we were there she lost her first tooth!!! And then a week later lost her second tooth. She let Ms. Krouse pull it during lunch one day at school. Then she was absent the next day due to strep throat and when Bart went to go pick up the tooth from Ms. Krouse she had written the tooth fairy a letter. Apparently there was a lot of excitement with the pulling of the tooth and it was an early dismissal day so the tooth had been safely put away in Ms. Krouse's lunch bag and then the bag didn't get brought to school Friday. The note to the tooth fairy explained it all and apologized (so cute!). The following week we got the tooth under the pillow and found out that Gabrielle's tooth fairy's name is Maribelle Molar :)

Gabby and Avery at the beach in Biloxi, MS

Nanny Kate taking the girls out to the water for the first time

As always we appreciate your continued prayers for our sweet Gabrielle and our entire family. Thank you all and god bless!

The Graduate

I know it has been quite some time since I blogged & for that I apologize. But honestly and thankfully there has little news to report. I didn't think that there would ever be a day of calmness, of relaxation, of not worrying constantly about the up coming surgery. In March, Gabrielle turned five years old. In five years this will be our first "surgery-free" year (oh god I hope I didn't just jinx us-fingers crossed) that is truly one of our biggest milestones. 

Today we hit another milestone, Pre-K graduation. 

I remember days when I was pregnant with Gabrielle worrying that she wouldn't survive long enough for us to celebrate milestones like 5 year birthdays and Pre-K graduations. I know look back on that and wonder why those thoughts even crossed my mind. She is the most incredible little girl. She fears  things in life that any typical 5 year old girl does... bugs, dirt, and loud noises. But then accomplishes things that I have feared for her by leaps and bounds... surgeries, school, and making friends. This fall she will start Kindergarten at Lake Elementary. Just our next "normal" milestone and can't wait to boohoo as I drop her off in carline and drive away. I'm just beyond thankful that God picked Bart and myself to join this beautiful creature on her journey through this scary world. He hand picked us to guide her, care for her and love her. 

Recently Gabby just battled off her first UTI of the year. That's actually great considering that it is June so of the children that have OEIS battle the, constantly. I have to brag on her too, she was incredible at the ER. it's the first time that she hasn't cried about going to the hospital. She handled triage like a pro & watched Frozen like she was sitting on her own couch at home. The only tears that fell that night were when they catherized her and gave her a shot of rocephin. Thankful for the little things. Thank you to everyone that continues to pray for Gabby and follows her story. We appreciate it beyond belief and know that is why remains healthy and doing well. Love to you all!! 

8 simple words

I read some words today on another persons blog that spoke volumes to me.


Carrie Cariello, author of the book What Color is Monday?, was speaking about her autistic son when she wrote them.

True, Gabrielle is not autistic. But yet having a special needs child I have learned, gives you similar views even though the afflication may not be exactly the same. The world today is changing, everyday changing. Sadly it seems more for the bad than for the better. While our hearts and minds become more accepting to more different things, there are still a mass at large that judge simply on appearance... That person looks different. They don't communicate well. The don't make eye contact. They smell... the list could go on and on really.

Don't look at yourself and say you never do that because I know that is what some of you are doing.

You do it.

I do it.

Heck, even Gabrielle does it.

Yes, even with a special needs child that has physical limitations I catch myself looking at other adults and children and judging on appearance. One thing that I may do that some of you don't do is that I give it a second thought which is... would I want someone to talk or think about Gabrielle that way?

Next time you see someone that is different try not to stare, point, or whisper. Remember (especially if you have a child with you) they learn from you and watch and imitate what you do. If you point- they will point. If you giggle- they will giggle also. If you stare- they are going to stare too. We can not change the past, what has happened then is done and should be left there. However, with our current actions and thoughts we can change our future and what future people do. I am not being judgmental or lecturing you. I want you to know, if you want to know something please just ask us. I enjoy sharing Gabrielle's story because I hope one day to help some other family that may have been where I was almost 5 years ago now. I challenge you- I challenge myself to change the way you think and perceive things and people. I can tell you that I myself am one of the most judgmental people I know. I constantly worry about what someone else is thinking... having Gabrielle in my life is helping me move past those thoughts and broaden my perception of people.

Gabrielle is different.

Gabrielle has a colostomy.

Gabrielle will never use a bathroom in the typical way.

Gabrielle will always be shorter and smaller.

Gabrielle will always walk with a little gait to her step.

I did nothing intentionaly wrong when I was pregnant with her. I took my vitamins. I kept my weight down. I didn't have gestational diabetes. I received exception prenatal care from both my regular OB and my maternal fetal specialist. I could not control what happened to her when she was growing in my womb. We do not have all the answers as to what went wrong. Actually, we have very few answers. Questions will always uncontrollably linger. The biggest question being the smallest word... Why?

I will end my blog today exactly where I began, with the words that spoke to me from Carrie's blog... 8 simple words.

"She's exactly the way she's supposed to be."

And she is exactly that... So God created mankind in his own image, in the image of God he created them; male and female he created them. Genesis 1:27

Gabrielle is strong willed.

Gabrielle is brilliant.

Gabrielle is exceptional.

Gabrielle is loved beyond belief.

Gabrielle is perfect.

Gabrielle's family will take on the world right by her side. We will change perceptions one mind at a time because we know personally that the person you see is exactly the way she was supposed to be. Take a minute to get to know her and she will win you over with one bat of her big brown eyes. We invite into our story, our life, our world.

As for Gabrielle's health, she has been doing really well. She also is doing well in school and gearing up for the end of a great pre-k year. We have a mardi gras parade coming up at daycare, Gabrielle
& Avery's birthdays, and lots of other exciting things!

As always we thank you for taking time to follow and pray for our family and especially for Gabrielle. I'm going to steal another one of my favorite quotes from another one of my favorite blogs:
To God be the Glory!

Good Bye 2014, Hello 2015

What a great year 2014 was for our family. We have gotten to just relax and enjoy having Gabrielle. She only had the one small procedure in August for the cystogram to check the function of her bladder and the results were exactly what we wanted to hear. I remember being told back in May 2013 by another OEIS parent that it seemed like everything led up to that one big bladder closure surgery and then after that you didn't know what to do with yourself. From the moment that we found out Gabrielle was going to be born with OEIS, Bart and I have felt constant worry and what-ifs. The last (almost) 5 years have been a roller coaster with ups and downs and thankfully we were prepared for most of them. This year has been so different, I still constantly worry... almost more. 2014 has been such a relaxed year just like that mom told me it would be, like you hurry up and there are procedures after procedures and then... nothing. Trust me I am by no means complaining but it is an awkward feeling for me. I try to not to be an overprotective mom or a hovering mom. I want Gabrielle to be curious and ambitious and not to let her uniqueness hold her back. I know most of you look at her and think how does she handle everything she has been through but truly she is an incredibly lucky child. She has had it much easier than so many of the other children with the same condition. I think that is why I worry all the time. I am in a holding pattern waiting for the other shoe to drop... thankfully it has not! She is currently fighting another bladder infection. They are very typical in children with her condition. The doctors explained to us in the weeks after she was born years ago that since her bladder was on the outside of her body it now naturally would always have bacteria on it, there is no way of getting rid of it. Since the bladder has been closed surgically last year it is now the perfect dark warm moist breeding ground for that bacteria to overgrow from time to time. The bacteria that Gabrielle always test positive for is E-Coli. A few days after that her stool also became watery so we are now having her stool cultured to make sure that she also doesn't an overgrowth of E-Coli in her intestines also. Hopefully we will hear back from those test results tomorrow. So far the only abnormality they saw was blood in the stool but that is normal for people with colostomies. All in all other than the bladder infection and a runny nose she seems to be doing  great.

Gabrielle started taking baton lessons this year at daycare. She seems to like the classes and they also got to participate in the Gonzales Christmas parade. She had a blast! We spent Thanksgiving in Ruston with my family and had a wonderful time seeing that side of the family. Christmas was insane... I swear Toys R Us backed up a truck and unloaded in my house. She and Avery have had a blast playing with all their new toys. There have been a few scuffles over the toys but they end quickly. We have had family in our house since Christmas... grandmothers from both sides of the family spoiling the girls rotten. We also had family over for Christmas dinner. Yesterday we took the girls bowling and for ice cream for their New Year celebration. I think they both had a great time... Gabby got 1 strike and 1 spare and she even won one of the games we bowled. As always thank you for following our story and I am so thankful that for now the story is boring and just plain everyday life. I have never felt so blessed as I have this year... just getting to enjoy watching my special little girl be just that... a little girl.

The Big Apple



Waiting on our first plane


Hey everyone! We have arrived back home from our first trip to our new hospital home. First off I want to extend a big thank you to Mark, Darlene, Jason and Allie Sheets for opening their home to us for 3 days. This is Bart's uncle, aunt and cousins that live in New Jersey. We greatly appreciated the place to stay and enjoyed our visit.


Hanging out with Uncle Mark.




Friday morning we started our day out early waking up at 430 am to head to New York. No problems finding the hospital... thank goodness! The hospital itself is huge but thankfully we only had to learn about the 4th floor (same day surgery floor) for this trip. We passed right through the pre-op with no problems, except for the fact that when Dr. Alam asked to see Gabby walk she refused. We did talk her into walking to the next pre-op room where Dr. Alam did catch a glimpse of her walking. He was very excited and pleased with how staight she was standing. Once she realized that he was watching she froze and wouldn't take another step which amused him. They then gave her a dose of Midazolam to help relax her prior to being put to sleep. This is the first time we have done that and it helped relieve some of the tension prior to the procedure because she was so goofy and silly. She literally had me crying from laughing.



silly girl

She was actually only in the procedure for about 20 minutes. Dr. Alam came out beaming... hallelujah! I always look for his smile when he comes out from procedures because I have seen his worried face and I don't like it at all. He sat down with us in the waiting room, full of nothing but good news. He told us that he was very happy with how her bladder and urethra looked from the last surgery. Dr. Alam said that he was shocked that her pelvis has stayed together, it is expected that the pelvis will split back apart after the bladder closure surgery. He also said that we will NOT have to start cathering her because she is leaking urine as she should instead of holding it up in her bladder in addition he said that he doesn't see any signs of kidney reflux. That is great news because it was a big concern for us being that she has a pelvic kidney. The kidney is pretty much at the same place her bladder is instead of being higher up like yours or mine which could allow for urine to back up into her kidneys. Next on the list of things for Bart and I were to throw all the questions at him that have been rolling around in our heads since we saw him last October when he announced that he was leaving. 1) What is our next step from a urology stand point? answer: to take our time. He said that Gabrielle is still very small so he doesn't to rush into another surgery. The next thing to do would be her bladder augmentation (to make it larger), her body cavity is about the same size as last year so we don't want to over crowd her other organs at this point. We are looking at this step happening in about 2 1/2 years when she is around 7 years old. 2) What should we do about her colostomy? Gabrielle actually asked the other day about reversing her colostomy. Dr. Alam said to downplay it and act like it is no big deal. He did say that after doing some bowel management testing and IF it works that this surgery would happen at the same time as the bladder augmentation. 3) Do you think she will qualify for bowel management? answer: at this point....No. It will be a lot of work to get her stool thick enough and she doesn't have very much colon at this point. 4) How can we prevent overgrowth of E-Coli in her bladder because that is what caused her 2 bladder infections recently? answer: probiotics, Macrodantin antibiotics and lots of fluids. 5) Why do you think that Gabby vomits a few times a month? answer: WHAT? SHE IS VOMITING!!! Yes she randomly vomits from time to time usually in the car or wakes from a dead sleep and vomits until she empties her stomach. Then she is done. He wants to schedule an upper GI to be done locally in Baton Rouge or NOLA. He said that sometimes the colon can flip over backwards causing a problem during digestion. 6) What do you think about her hips protruding? answer: schedule an appointment to see Dr. Accousti in NOLA, her original ortho doctor from birth. 7) What is the plan from here? answer: see ortho, get upper GI both soon. Then in 6 months schedule a ultrasound follow up with him in NYC in 1 year. Our response... ONE YEAR!!!!! WHAT??? This is our first 1 year release she was born... I honestly don't know what to do with myself! Finally after all that was discussed we got to go back and see our princess.


sleeping beauty

 She bounced back like a champ and was playing that afternoon. We flew home late yesterday. I have never been so happy to see the lights of New Orleans. Thank you to everyone who prayed for us while we were traveling and also that just follows our journey. Never in my life did I ever think I would get to see NYC even if it was only from the inside of Morgan Stanley Childrens... oh the adventures this little girl has brought her mama and daddy on so far.


New Orleans from my airplane window