Caitlin leaving Pre K onto Kindergarten

Caitlin as you can see is doing really well, look at her today. In this picture she is accepting her certificate completing Pre-K and will be on her way to Kindergarten in August. Her teachers were wonderful and with her. Teachers new of her condition before she started school and gave them information to better understand what bladder exstrophy is. We are so proud and blessed she has done so well. Thank everyone for the prayers and support.



caitlin's first day of school

Caitlin started Pre k, Friday was her first day 8/17/12. She had a great day and did well. She cried at first when I left but I knew she would be fun. This is such a milestone for her. Growing up so fast. We will see how things continue to go.

Potty training

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

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

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

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

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

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

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.

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

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

YAY!! We finally made it to Boston for surgery

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

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.

News from Boston on test and procedures

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

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

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

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

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.