Anxiousness setting in

Well… I promised an updated blog the other day to someone, somewhere so here we go. I can already go ahead and tell you this one is probably going to ramble. I have taken several days to compose all the thoughts that have been swirling in my head, but I just can’t seem to get them in any kind of order, so we are going to just go with it and see how it turns out. I do apologize ahead of time if none of this turns out to make any sense at all.

This is her last year as a Brownie Girl Scout... possibly continuing as a Junior Girl Scout. We will see! 

Our beautiful Gabrielle Parker has just turned 9 years old as of about 2 weeks ago. I can not even believe we are now just one year away from having her in our lives for a whole decade. That’s crazy, isn’t it? To recap last spring we visited her urologist, Dr. Alam, in New York to prepare for an upcoming surgery. Long story short once we got there, we received the news that in the Summer of 2018 he was going to be changing hospitals yet again. Thankfully, this time a little closer than New York… Charleston, SC. Due to this move Dr. Alam, Bart and myself decided it best to postpone Gabrielle’s surgery until this summer. By then he would be settled in at his new hospital and have all his new staff in place. Fast-forward approximately one year and we have surgery date and we are just about exactly 2 months away from that date. Let me just preface the rest of this information with …. I’M SO FREAKING ANXIOUS, NERVOUS AND just plain sick in my stomach about it at all times. There is a list of reasons why I’m having these feelings and we will get to them in due time.

Surgery deets. The surgery is scheduled for Thursday, June 13^th. The surgery will be at Medical University of South Carolina in Charleston. The surgery will of course be orchestrated and performed by none other than Dr. Alam and his team of fine associates I’m sure. While I won’t divulge all the surgery details, I will let you know that this surgery is mostly going to pertain to her bladder as the last surgery did. It will give her what is known as a mitroffanoff.  This will give us the ability to catheter multiple time daily. This can be both a blessing and a curse… but more on that later. She will go to either the PICU (Pediatric Intensive Care Unit) or what they call the step-down unit following surgery for hopefully no more than 3 days. The main reason for her stay in PICU in for pain management. During this time, she will be under sedation and intubated. Once her pain is being controlled well, she will be moved to regular floor and we will stay there another 7-10 days in the hospital. After that we will check out of the hospital and hopefully, fingers crossed, have a room waiting for us at Ronald McDonald house and will stay there another 2 to 7 days before being allowed to come home to Louisiana. This will put us home around the end of June if all healing runs as hoped. Then we will return to South Carolina toward the end of July for a second surgery to remove some surgical hardware stay around Charleston another couple of days for follow ups and catheter training and then come home just in time to start 4^th grade. Nothing like cutting it close!

Isn't she just the cutest. 3rd grade school pics came out great this year! 

Now back to my anxious nervousness. First off, this will be the first time that Bart and I have had to be separate during one of Gabby’s recoveries. Her last surgery that included a recovery was in April of 2013. Our whole family including 3-week-old little Avery and Granny basically moved to Cincinnati, OH for 2 months for Gabby to have surgery and recover. This was all possible due in large part to out family and friends that helped out by multiple ways… coming to Cinci to visit, watching our house and most importantly holding an awesome fundraiser so that we were able to be off work that whole time and not worry about our bills and travel cost. This time however, Avery is now 6 and the hospitals don’t really take kindly to having a completely healthy child hold up in one of their hospital rooms for weeks on end while her sister heals from surgery. So currently the plan is as follows. On June 6^th Gabrielle and myself will drive the 13 hour trip to Charleston, SC. She has a pre-op appointment with Dr. Alam on Friday, June 7^th. We will hang out and see the sights around Charleston and then she and I will check into our room at Che’ MUSC for her pre-op surgery clean out. Basically, this is all kinds of unpleasantness to clean out her colon while keeping her on a clear liquid diet for 48 hours… sounds like blast, right? (Insert sarcasm…. Here) Welcome to Gabby’s life. (and here) Sometime during these 2 days Bart will fly into to Charleston and join us for this fun filled time at the hospital (and sarcasm here too). If you can’t tell I deal with most things in my life filled with as much sarcasm and light heartedness as I can otherwise, I will lose it and by it… I mean my sanity. So that Thursday, June 13^th she will be prepped and taken in for what we are told will be an all-day surgery. Just to give you an idea of what that means… her last surgery in 2013 was an “all day surgery” we were literally the last family in the waiting room it took almost 10 hours. The only other surgery that took that long that day was a family whose child was having brain surgery. From here I’m not sure exactly which day but Bart will fly back home to St. Amant and Gabby and I will be on our own for approximately 14-20 days of mother daughter bonding time. My next thing that I’m nervous about is being away from Miss Avery Grace that long. I don’t think I’ve been away from her more than 3-5 days and that was one of Gabby’s other doctors’ appointments. Not to mention Gabby and Avery being away from each other that long. They are both extremely anxious about all of this. I try to bring up this summer as little as possible because it upsets them both. There will be lots and lots of Facetiming happening. Another thing is that Bart is my backbone a lot of times when it comes to the nursing staff. Gabby has never been real keen on nursing staff taking care of her, touching her or basically being in the room with her at all. Typically, we have the nursing staff teach us how to take care of all her needs except giving medication and we handle it all from wound care to bathing to changing bed linens. We are basically probably the family that most nurses hate. Probably my biggest two things to cause me anxiety is about her being under anesthesia that for surgery that long and controlling her pain. Every time we put her under, she comes out of it different, changed, like she is trapped inside of a body that isn’t hers. She has outburst that she can’t seem to control, she refuses to communicate, she becomes sullen and draws inward. It usually takes weeks sometimes months for her become 100% herself again. As children we have a very high pain tolerance. I do believe this to be true of Gabby however I also know that after anesthesia she would rather sit in pain than communicate that she is hurting… hardheaded little thing. So, we will use our usual method of watching her heartrate if she doesn’t want to communicate and give her meds whether she ask or not. We have learned through out past surgeries with her that if we she her heartrate and blood pressure start to rise that she is most likely having pain and just dealing with it internally.

While I do write this blog to keep you all up to date with her medical care it really helps me clear my head also.  As I was typing these words, I could feel some of tightness in my chest release. If you want to know how you can help us out… pray for her, pray for our family, pray for her surgical team, pray for her health. We love each and everyone of you dearly and you all do so much for us in so many ways that you don’t even realize. Thank you for following our continued journey with Gabby and there will be another blog post coming up soon and many more during this summers surgery.

Big News from our recent trip to NYC!

Ok, so after a month of waiting I can finally make my blog post. The first week of April we drove to New York City for what we thought would be Gabrielle's pre-op appointment for her upcoming surgery. That Monday morning Bart, Gabby and myself drove into New York City in the snow... CRAZY I know! When we arrive for her appointment that morning we headed to radiology for her usual renal ultrasound. He wanted to see recent images of her kidneys and bladder to make sure that everything was looking healthy and there no kidney reflux. Since she has kidney that is exactly parallel to her bladder (this is a called pelvic kidney) she runs risk of urine running backwards from her bladder back into the kidney. This tends to cause kidney infections which as of yet she has never had one. Thank you sweet baby Jesus! Once done with the ultrasound we headed to Urology clinic to see Dr. Alam. We had just sat down in the waiting area and here he comes to get us himself, just one of the many reasons I love him. He always has a huge smile on his face when he greets us. :) The other part of our appointment was to teach us how to catheter Gabrielle. To prep her bladder for surgery and get it as healthy as possible he wants us to catheter twice daily, during the evening catheter time we also flush her bladder with Gentamicin solution. This is an antibiotic solution that thankfully we are able to make at the pharmacy where I work. Since Gabby was born with her bladder on the outside and it stayed that way for 3 years she naturally carries bacteria in her bladder. If allowed the bacteria can overgrow and give her urinary tract infections... basically she constantly has a bladder infection. This overtime makes the bladder walls deteriorate and weaken. Flushing her bladder with the Gentamicin keeps the bacteria at bay and allows her bladder to become healthy. Now that I have explained all that to you I can tell you why I have postponed my blog post for a month. We are sitting there catching up with Dr. Alam and talking about the upcoming surgery and her surgery date is mentioned. The surgery was scheduled for June 5th. He says "Well, I have something to share with you both but you aren't allowed to post anything about it because I know several of my other families follow your story. There is a chance that I'm leaving New York." At this point Bart and I are both like "PLEASE! Tell us you are moving south?!" He laughs because we made such a big fuss when he moved from Cincinnati to New York City. I'll be honest I didn't think we could pull New York City off. I mean we do have family in New Jersey and we love them dearly but I'm not one to want to burden anyone for any length of time. I was not looking forward to spending the summer in New York. 1) It so expensive! 2) Like I said earlier, I didn't want to barge in on Uncle Mark and Aunt Darlene for an entire month. 3)  We were going to have to leave Avery behind for at least half the time. He shares with us that over the last year since we have seen him that a few different hospitals have contacted him on the hunt for urologist. There were 3 in particular that he mentioned: Seattle, New Orleans (Dr. Ortenburg, head of urology is retiring), and Charleston. It felt like an eternity before he finally stated that Charleston was really after him big time. He said that he had already been on one interview there and had a second one scheduled for the week after we were there. When he went this time they were going to be looking at houses for he and his wife. I was so excited! It was hard to contain it and not get my hopes up. He said that he would let me know when he got back home from the trip. I waited the whole next week waiting to hear from him and nothing. So finally Saturday morning April 14th, I texted him and basically said "Well?" He said the hospital is wonderful. I have not signed a contract yet but that will be following shortly. Your family is the first to know to not say a word. Then this morning I see this on facebook...

Y'all!! I'm over the moon excited about this move. He will be just 13 hours away instead of 23! I've already be scoping out the Charleston Ronald McDonald house and it looks really nice. 

With all of this being said... what is up next for Gabby? Well, after discussing his potential move in length the day of the NYC appointment the following was decided. Once the surgery is performed we would have had to be at the hospital for up to 2 weeks. Then there will be 3 follow up appointments. Her surgery was originally scheduled for June 5, which would have put us having surgery in NYC and then all of her follow ups at the new hospital in Charleston. He expressed that he was very pleased with how Gabrielle was growing and that her bladder was currently pretty healthy and with the added Gentamicin it would of course get better. He said that he was completely fine with postponing her surgery. I asked him if he realized that we would have to put it off an entire year until her next summer break due to the extensive recovery time and he said that was fine. It just gives her more time to get as healthy and big as she can get. So... unless any emergencies happen we are postponing her next surgery until June of 2019. And trust me Gabby was more than happy about this, lol! Since we have gotten back home I have continued to catheter her and everything is going very well. She has gotten used to it and just lies and reads a book while I cath her and it takes maybe 5 to 10 minutes. 

The rest of our trip we were able to spend time with family and site see a little bit. We spent Tuesday picking up bagels from our favorite bagel shop and we drove to Hoboken to see Carlo's bakery and had a snack and shakes at Johnny Rockets. 

Later in the week we all (including Granny Dolores) went to the 9/11 memorial. It is really something to see if you ever make a trip to New York you need to put that on your list of places to go. We took the guided tour and they tell you all kinds of stories about some of the people that were there the day the towers fell. Then on Friday we left a 130am  and drove the whole 23 hours home in one day with Bart and I trading off. We got to see some beautiful country on the drive up and on the way home. The girls were excellent the entire trip (ipads are wonderful things, lol!)

Family picture in front of the Oculus.

Granny and Gabby in the big city 

My two little loves outside of the 9/11 museum

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!