Caitlin

Potty training

2011-10-19T19:22:00.000-05:00

As you all know Caitlin was born with bladder exstrophy and since her reconstruction surgery she has been doing well. We are so proud that one of the many milestones she has accomplished (well in progress) is she went to bathroom to void a few times in a day. This is great considering she hasn't used her bladder muscles and has to get use to it. This means she can now start to tell when her bladder is full somewhat. The plan is to bring her to potty every two hours and measure, we will see how this goes.

Great news for test and followup May 2011

2011-06-12T08:23:00.003-05:00

Caitlin had appointments for test and to see doctors in Boston end of May. We were in Boston for a week and all exams/test was great news she can now hold (bladder) up to 60cc of urine and it does expand like should. Bladder is growing along with her kidneys. Our prayers have been anwsered thus far. We will go back next year for more follow up test. Keep the prayers going. Caitlin has grown so much and is doing great she is also off the medicine she had to take for reflux grade 3 for it is now gone. Caitlin has come so far and is doing well no infections since last year for urine so this is great news. We do still check her urine if she runs a high fever to be sure and I love her pediactric doctors Childrens international,we have here at home they take great care of her as well my two boys.

2011 the new year

2011-01-03T09:50:00.002-06:00

This is a new year for 2011 and we are so thankful to all of you for your support and prayers for Caitlin. She has done so well since surgery last year and things seem to be good. We are praying for a more normal for this new year for our family. Her brothers just adore her. We go back for follow up sometime this year and praying for continued good news. Thank you all again.

Follow up for Caitlin September 10

2010-10-12T20:47:00.004-05:00

Caitlin is doing great we seen the doctor for follow up and had her sp tube removed and everything looks great. She did get a uti and now she takes a antibiotic everyday to be sure she doesn't have any problems. Caitlin is doing remarkable and we pray each day she continues through this. We are hopeful she doesn't need any more surgeries and as long as everything stays in place and no problems she should do fine. Our lord has great plans for her for she is such a blessing as all my children are but she is unique.

We are heading home

2010-09-06T09:16:00.002-05:00

We seen the nurse Monday morning 8/30 and all was looking well. The plan was to return that Thursday but with the storm in route to Boston we asked if we could fly home early and the doctor was okay with it. We were so happy to be able to fly home that Tuesday and see our family. The flight went well and we made it home safely. We have been home a week and everything going well. We will return to Boston for follow up and tests. Caitlin is getting stronger each day and has been crawling, pulling up and trying to stand some she was able to take little baby steps all by herself but her legs are still weak.

She is still a happy girl

2010-08-23T20:43:00.004-05:00

Our girl hasn't lost her happy smile and sweet face through all this she is adapting well considering she has been lying on her back for 4 weeks not able to be picked up are anything. She is just such an angel God has been so good to her in his healing power thank each of you for the prayers again. Everyone here just adores her so much and couldn't ask for better team of doctors and nurses they all have been great.

Caitlin still here in Boston

2010-08-23T20:36:00.003-05:00

we are still here in Boston in hospital hanging out until we know the next step. Caitlin's fever is gone but she is still on medicine by month for pain right now. She had a big day today her body armor was able to come half way off. She did so good with the sound of the saw so proud of her. We will be having test tomorrow at some point to check things out and go from there so keep praying please for a great outcome. She so far is healing really nicely and has been a trooper through it all. Hopefully these test will be good news and we can be discharged at least to go stay at children's house then at some point home. We will take it in steps. Caitlin will also come home with her sp tube that you see in the picture, it will not be removed until our next visit for the reason of making sure the bladder is doing what it needs to do first. I have been learning how to take care of her with the tube in being its gonna be a little different than when she was first born. I was worried she would pull it out being she is much older now.

2010-08-17T17:30:00.002-05:00

Caitlin started running a high fever yesterday through the night and day. They did blood work and a urine sample. It showed an infection somewhere, the urine sample isn't back for a few days. She just had to get an IV put in to get meds but she is doing well other wise. keep the prayers coming.

Caitlin gets ready to move out of ICU

2010-08-17T16:49:00.003-05:00

The girl is a trooper, she did great with the breathing tube taken out. She was moved to a regular room on Saturday the 7Th of Aug. She is taking the cast thing really well considering she can't move about. So far things are looking really good. She has great urine output- they have two stints in her abdominal and a sp tube also to help drain her urine. She was able to have one stint taken out on Wednesday she did great it wasn't to painful for her, then the next day the other one come out. She hasn't been on any pain medicine since her IV come out only Tylenol for discomfort. Now she only has the sp tube. Keep praying for her healing

2010-08-04T08:51:00.001-05:00

YAY!! We finally made it to Boston for surgery

2010-08-04T08:43:00.003-05:00

Caitlin was admitted August 1,2010 at Children's Hospital Boston. Caitlin went in for surgery early Monday morning on the second. She did very well during her surgery it was about 13 hrs and she is now in ICU for healing purposes this week so she can be watched more closely and she is pretty much sedated during this time to help her rest. Talked with the doctors this morning and said that they may take tube out for breathing on Thursday. They put her in a body cast instead of traction so we are waiting to see how things go so far the doctors and team have been wonderful. Please keep praying as she heals and recovers. Thank you all for your prayers and support.

We are nearing closer to surgery time

2010-07-07T19:15:00.004-05:00

We are on our way to getting things ready for Caitlin's surgery. We are so thankful for all the prayers and support everyone has given us. Caitlin has grown strong and determined she is going to do things like her walking, the leg muscles were weak and she favored one more than the other. I just hate that she will have to learn how to do it all over again but I know she can. I will keep everyone posted as it nears closer.

2010-07-07T09:56:00.002-05:00

News from Boston on test and procedures

2010-04-24T19:56:00.004-05:00

In the last post in November of last year we took Caitlin to Boston to meet the exstrophy team of doctors and they did test and procedures to see more of how things are with Caitlin. Well it was good to hear that her bladder has grown some and can hold up to 22cc which is better than nothing. We were told that her kidneys look good and the doctors wanted to wait until 2010 to do surgery to give the bladder a chance to grow some to help her better. We are now set for surgery Aug 1 she will be admitted and surgery day is the second. We are so glad to finally have this done for her even though it was a long battle but its worth it for my child. I do have fears of what the outcome of the surgery will be for our daughter, and us as her parents have to go through. I know that the lord is with her and she is a strong little girl and we will take it one day at a time. Please do pray for us and I will keep you up to date.

A New Year

2010-01-03T13:37:00.002-06:00

We wanted to let everyone know again how much we appreicate all of the prayers and support. We hope and pray you all have a great Happy New Year! We pray things will go good this year as we move forward to surgery in the months to come for Caitlin. I am working on the video still for Caitlin's first year. Have a great Christmas and New year.

We made it to Boston

2009-11-18T18:46:00.002-06:00

We are in Boston waiting for our appointment on Thursday to have Caitlin's procedures with all kinds of test that the doctor ordered and meet with him to see what is actually going on and how they will proceed. Keep the prayers and I will keep you up dated when I get the answers.

Finally we are getting somewhere

2009-11-03T19:44:00.003-06:00

We have been on a roller coaster ride for some time and we can finally get off (we hope). Well as we have been working hard on getting things done we found out that in my past post that JHH and our insurance just can't come to terms with things so they canceled our appointments we had. Well this being said I went on another mission to find another place for Caitlin who will treat her condition and found Boston Hospital for Children. I contacted them and got information. I then called our insurance to speak with them about what will happen if we found another place and it turns out Boston is a provider for La. Now, why couldn't they tell us this to begin with? Well we have appointments and dates set up and will be finally on our way to get our Caitlin taken care of, as long as things continue as planned. The staff seems to be really good and nice. Thanks all for the prayers keep them coming.

What we have here is a failure to communicate are something

2009-11-01T19:46:00.005-06:00

Our family is so upset right now with insurance, We had the best news ever for our daugther telling us that surgery will be paid for out of state. Well we got bad news this week telling us they will not pay for surgery are care unless any hospital we go to becomes a provider of La. and accepts there fees. Now, this leaves us with no place to go at this point for our child get the care she needs. This is crazy and there has to be away around this. We are talking about a serious situation.

Our Insurance sent us to another Doctor for Consult

2009-10-03T08:20:00.002-05:00

Our State Insurance has contacted me and sent us to another doctor in Shreveport, La last week. It seems that there is not a doctor in La who wants to take on this complicated case being it involves so much. This doctor agreed to see her but said this is to much involved and she is better going to John Hopkins for this surgery being it has failed and they do more of these surgeries. That was good news that a doctor is honest about not feeling comfortable in doing this. Dr. Gearhart 's office from John Hopkins called me and said they are getting everything in order and working on the final date so we will we hearing soon. We have our hearing coming up with our state insurance on Friday, to plead with them to help pay for this surgery. If I don't hear from them we have to go, We are praying they will help and don't have to go to court. Insurance don't understand how serious this is and complicated. We will be happy to get this all done and over with to help our daughter. Keep us all in prayer please.

Our Caitlin Turned One Year Old on Sept. 14th

2009-09-21T21:29:00.006-05:00

We wanted to share with all of you Caitlin's First Birthday! I can't believe my baby girl is a year already, time goes by to fast. Caitlin is a strong happy girl and she loves to eat...lol The girl topped her brothers with the mess she made.

Watson, La Benefit for Caitlin Sept 12

2009-09-13T10:37:00.006-05:00

Scott and Cindy found this place and had a dinner done for Caitlin at the Friendship Benefit Center, Saturday Sept 12. This place is so amazing and the people who do this are all so wonderful in helping people. One of the ladies made a quilt for Caitlin, it is so pretty and so kind of her to do this. The men and women that donate there time to cook these meals put there heart and soul into it and it is truly a good meal. They have two dinners that they cook, so you have two lines with volunteers serving up the food getting it ready for people to come through the drive up for pick up.

The dinner turned out fairly well considering it was a rainy day. The dinner was from 10-2 and the last hour we got slow with nobody coming in so Charline, Cindy and myself walked out to the end of the road holding a to go box with $6 dinners written on it. We got a good many people to stop and buy a dinner, some stopped at the road and gave a donation. It started to rain why we were out there, but it was to help my little girl who needs surgery this fall. Well we went back inside the center to clean up and get things together when some people started to drive up and said they passed us in the rain and thought we had to be out there for a good reason and brought a dinner and gave a donation. This just touched me that they would do that. The family started doing fundraisers in May and I never thought that it would turn out as it has. This has been so amazing of all the good people out there who try to help in any way. Everyone has touched my heart and we thank you all for your support.

The Cost of surgery

2009-09-04T15:12:00.004-05:00

We got a final estimate on Caitlin's surgery which is around $150,000 that is a lot. We are trying to find other organizations who may help if many can chip in to help it may workout. We are still fighting insurance to get this done. We have a hearing set for October 9. I am getting papers and evidence together to present to the court. Caitlin's surgery is coming up this fall and I'm hoping that the weather in Baltimore, Md is good. I am still working on pictures to put on the blog for you. Have a nice day everyone.

A special thanks to family, friends and all

2009-08-20T21:44:00.005-05:00

I have to give a Special thanks to Scott for all of his hard work he has put into helping his niece Caitlin, He has such a tender and big heart thank you again Caitlin thanks you to. Thank you to Marlene and Kevin for all of your help also with yardsales and raffles doing whatever you can. Thank you Cindy for all that you have done also and continue to do. Thank you to Cheryl and Terry for your help support and helping with the kids. I have to say Thank You to Husser's Glass in Amite for Tammy is Caitlin's number one fan and for there help, MS. Tammy has done so much thanks. I also want to send a big thank you to Kathy and Richard Reed for the dinner they did for Caitlin. I can't forget Mrs. Sylvia Shon with the Daily Star for the updates and more to come thank you.

Thanks to all of the local stores- Ardillos, Thrift Town, Drive In, Skips, Bond Eye, Berry produce, all the churches, Shriners, Mikes catfish, Guy's Oyster bar, Tall Timbers, Spitals, Gabriel building supply and all that are out of town. We want to give Bill Hood a big Thank you and the employees for there support also. We have so many people to thank so I will leave with a thank you to all for everything. You have touched our hearts in so many ways we can't say thank you enough. We love you all Robertson Family.

Thank you to all

2009-08-19T19:06:00.003-05:00

Our family wants to thank all of you for all your prayers, support and donations to help Caitlin. We are hoping to find out something soon about her appointments and surgery for John Hopkins, We are doing our best to get her surgery done by Dr. Gearhart and we all just pray that things go well where ever the surgery should take place. I will continue to do my best between appointments and all to keep you up to date. I am trying to post new pics but am having problems so they should be here soon.

Thank you & God bless you,
Robertson Family

Trip to Baltimore, MD To see Dr.Gearhart

2009-08-13T18:30:00.003-05:00

We met with Dr. Gearhart Tuesday morning August 11, 09. He truely knows his stuff on Bladder Exstrophy and is a wonderful surgeon. We found that Caitlin's bladder is coming out and has been since her first surgery. The doctors we've seen here in Louisiana said it was normal everytime we asked about it. Dr. Gearhart said that she needs this operation in order for her bladder to have a chance to grow and be normal and if it isn't done by an experienced doctor she can have her bladder fail. We are going to do our best to try to bring her to Dr. Gearhart for this to be done. We just can't take this chance that could cause more problems which can affect the rest of her life. Keep praying for our family.

Raffle Benefit for A Handmade Quilt Drawing October 17th

2009-08-02T12:30:00.005-05:00

Family and Friends have another Raffle going for A Handmade Quilt $2 a chance. Drawing will be October 17th 12 noon at Husser's Glass/Balloons Galore in Amite. All proceeds go toward Caitlin's Fund to help with medical expenses. You can buy tickets at Husser's Glass are call Shannon at 985-748-6647. You do not need to be present to win, we will contact you.

Raffle to win $300.00 Drawing July 25th

2009-07-27T19:05:00.002-05:00

The drawing for $300.00 was done on Saturday July 25th, The winner was Caitlin Robertson. Thank you to all who brought raffles and put Caitlin's name in drawing for the win. This win will go with the rest of proceeds toward her surgery. Thank you all.

Benefit Dinner on July 18, 2009

2009-07-20T12:48:00.002-05:00

The dinner for baby Caitlin was a great success. We sold close to 4oo dinners and had donations given for her. We thank everyone out there who has been supporting our family and helping with donations, those who helped sale the tickets for dinner and raffle tickets. We appreciate all that you are doing. We have a raffle drawing coming up on July 25,2009 at noon. The Exxon employees where my brother in law Scott works started this raffle and he put up the $300.00 to win. This was also a great success. I will let you know who wins. We have other upcoming Events to Benefit Caitlin for her surgery. We have a appointment to see the doctor in Maryland in October.

2009-06-20T13:22:00.000-05:00

2009-06-20T13:21:00.000-05:00

2009-06-20T13:09:00.002-05:00

one of my favorite poems

2009-06-02T08:01:00.000-05:00

Dear Lord, it's such a hectic day With little time to stop and pray For life's been anything but calm Since You called on me to be a mom Running errands, matching socks Building dreams with building blocks Cooking, cleaning, and finding shoes And other stuff that children lose Fitting lids on bottled bugs Wiping tears and giving hugs A stack of last weeks mail to read So where's the quiet time I need? Yet when I steal a minute, Lord Just at the sink or ironing board To ask the blessings of Your grace I see then, in my small one's face That you have blessed me All the while And I stop to kiss That precious smile

our Caitlin

2009-06-02T07:46:00.004-05:00

Hi everyone,

I wanted to let you know that Caitlin is doing well outside of needing surgery. If you were to look at her you couldn't tell that she has bladder exstrophy, she is always happy and smiling and moving around the best she can despite all this. We know that it will be a life long process for this condition, God has bless us with three beautiful children and I know he will guide us through the trails that may come ahead.

Meaning of bladder exstrophy

2009-06-02T07:28:00.003-05:00

What is bladder exstrophy?The word Exstrophy is derived from the Greek word ekstriphein, which literally means to "turn inside out." Bladder exstrophy is a malformation of the bladder, in which the bladder and related structures are turned inside out. The skin of the lower abdominal wall that normally covers the bladder also does not form properly and is separated, thus exposing the inside of the bladder to the external world. If you imagine a balloon that has been split and opened up so that the inside of the balloon is visible, you will have a picture of what has happened.
What other abnormalities are associated with bladder exstrophy?A baby with this condition will usually also have all, or some, of these other associated abnormalities:
In girls, the urethral opening is located between a split clitoris and labia minora.
Absence of a bladder neck and sphincter: The bladder neck is the funnel shaped lower portion of the bladder which contains the ring of muscles that open and close the bladder outlet. It is this muscle ring (sphincter) which makes it possible to achieve bladder control or continence. When it is absent there is no ability for bladder control.
Small bladder capacity: This means that the bladder is unable to hold a normal quantity of urine.
Abnormally positioned ureters: Ureters (the tubes which channel urine from the kidneys to the bladder) enter the bladder abnormally resulting in urine backing up toward the kidneys (reflux).
Separation (diastasis) of the pubic bones: The large bones which make up the pelvic cavity normally develop as a ring. The pelvis supports the bladder, the reproductive and the lower intestinal organs. The pubic bones normally join to form the front portion of the pelvis and to protect the bladder, the urethra, and the muscles of the abdominal wall. In bladder exstrophy the pubic bones have failed to join, leaving a wide opening.

Donations to help our Caitlin with her surgeries

2009-06-01T20:56:00.002-05:00

Our Caitlin is awaiting surgery that is needed to correct her bladder, pelvis and other problems that arise with bladder exstrophy. We have been doing fundraisers to help with the expense of things. She will have to have several trips to Baltimore, MD and most likely more surgeries after this one. Any donations that you would like to give is much appreciated and will go toward the Caitlin Robertson Benefit fund. We have had so many people to give donations in our time of need to help our baby girl and you all have been so generous. We thank you and God bless you.

Robertson Family

Our family and the trails that bring unexpectedly

2009-05-30T08:52:00.004-05:00

2009-05-28T14:45:00.002-05:00

Dylan 8, Brian 2, and Caitlin 7 mos

The boys taking care of there baby sister.