Hey everyone! I know that it has been awhile since my last update. So we start from this weekend and work our way backwards. This past Thursday we left out for Cincinnati to go for a follow exam with Dr. Alam. Our trip started off interesting with me leaving my purse on the plane that we flew in on from New Orleans and then while I was getting my purse back we missed our connecting flight from Dallas to Cincinnati. What luck! But we got on standby for the next flight and only arrived one hour late, thank goodness. Gabrielle was amazing on the flights! I couldn't believe there was no crying, being nervous, nothing. We were able to get a room at Ronald McDonald house, which is as close to home as you can get especially being that some of the workers recognized us right off and we haven't been there since June. That is amazing to me... think about they amount of families that pass through their doors on a monthly basis. What an incredible facility they have, volunteers and employees. After that we had to enjoy all the things they offer there. Gabrielle had to go play in the play room, we ate a good home cooked meal, and played on the playground outside and then we "rented" a couple of movies and watched those. Whew what a day!
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| Gabrielle and her daddy putting tabs in the house @ RMH Cincinnati. |
The next day we started off the day early with a renal ultrasound. Again, Gabrielle made me eat my words. No crying, no fussing, she justed laid there and watched her Tinkerbell movie they had in. Next was our appointment with Dr. Alam. While we were waiting we meet a really sweet lady that told us all about bowel management and what her daughter was going through. It was really interesting to talk to her about because we will probably be starting bowel management next year with Gabrielle. Bowel management is a process that you have to go through prior to getting your colostomy reversed. They try different diets and laxatives to see if Gabrielle can have a dry colostomy bag all day and then only go to the bathroom once a day. If she passes that test then we could possibly have her colostomy reversed. The lady we ran into said that her daughter had done excellent with it and that it was much easier than it sounded... hope so! Next we were off to Dr. Alam. While in the room Gabrielle seemed so excited to see him, she kept asking where he was and when he was getting there. Well when he finally got into the room she clammed up. She would hardly speak to me or Bart much less Dr. Alam and his nurse Lisa. She did let hime pick her up for a minute... that is monumental. Earlier in the week a spot popped up on the incision line from Gabrielle's surgery. We had Dr. Alam look at it. He said that is was small absess caused by a stitch from the surgery. He put her on Keflex 3 times daily for 10 days. Dr. Alam said that it would have to surgically removed. He told me to text him a picture of it the next morning to make sure that it was ok for us to go home. He also said that it is a procedure that he would trust Dr. Ortenburg (head of Urology @ Children's New Orleans) to do. We have to contact him when she is done with her antibiotic and he will give us instructions from there. Next issue to address was a piece of tissue that appear and disappear in her urethral opening. After examining that he decided it was a bladder polyp, which will also have to be removed surgically. He wants us to follow up with him in about 6 months for a bladder scope, at that time he will remove the polyp. He also wanted to address Gabrielle's weight and size, that is always a huge concern. She has finally made it onto the chart @ 0.2 percentile... yay Gabby! It only took her 3 1/2 years. We are bumping her Pediasure up to twice a day. If she doesn't start putting on weight then we have to revisit the NG tube... NNNOOOOO! I don't want an NG tube and I know she sure as heck doesn't! Prayers that she starts adding weight!
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| Love this man! This is Gabrielle and me with Dr. Alam. He is awesome no matter what Gabby looks like :) |
Going back a little bit in time, Gabrielle started physical therapy. It took a little time and proding but she is doing fabulous. A big shout out the all the ladies @ Woman's Center for Wellness in Baton Rouge. They have done a wonderful job there. Prior to leaving for Cincinnati we learned that Gabrielle is almost out of visits. Our insurance will only allow 20 visits per year. I called the insurance and found how to do an appeal. I am currently in the process of getting Dr. Alam, Dr. West (Gabby's pediatrician) and Caroline (Gabby's PT) to write appeal letters on why Gabby should continue. She is walking without a walker now. She is still weak but getting stronger everyday. I spoke with Gayla (head of PT) about writing the appeal letter and I asked her if there was anything that they would want me to address while in Cinci. She said that she and Caroline would like to have Gabby in knee splints, just at bedtime. She said the knee splints will help hold her legs straight at night to help stretch and lengthen they muscles in her legs. So while we were in our appointment in Cinci I brought this up to Dr. Alam, he said that he would address it with Dr. Mehlman (her orthopedist) but that he didn't see any problems with sending orders for it. So now I am just waiting for the letters to appeal to insurance and they have up to 30 days to decide whether or not to extend her PT. Prayers needed for that approval please!
On to the next subject... Dr. Alam is leaving Cincinnati! I first heard news of this about a month or two ago. I was devastated! We have become so attached to him over the last 2 years especially with the recent surgery and seeing him everyday for 15 days. I had heard that we has going to Texas Children's in Dallas, Boston Children's or John Hopkins in Baltimore. I was praying and hoping for Texas Children's alas sometimes things don't work out they way you want. I found out right before we left for Cincinnati that he was going to New York Presbyterian Hospital a.k.a Columbia a.k.a Morgan Stanley Children's Hospital. This was they first thing on the agenda to talk about with him during our appointment. Thankfully he brought it up. He said that he had kept New York very hush hush, none of his staff even knew that he was in talks with them. He got them to agree to all kinds of amazing things in his contract. 1) That they would accept medicaid from any state, ANY state! That is amazing. 2) that they will accept all the insurance that he accepted at Cincinnati Children's. 3) that if an insurance refused to pay his doctors fee then the hospital would write off that expense and not pass it on to the patients family. Did I say he was amazing yet? After talking it about it with Bart, we have decided that Dr. Alam is too important to us to leave him now. So we will be following him to Columbia in Manhatten New York. We will have our first appointment with him there next spring for Gabrielle's scope and removal of her bladder polyp. I am nervous about learning yet another children's hospital and how they work but I am confident him and I know that he loves and cares for the kids he treats. You can see it in the way he interacts with them, smiles at them, interacts with us, and his passion for his job and Cloacal Exstrophy. All in all it was a great appointment.
After her we hiked the 4 blocks down to the Cincinnati Zoo and spent the afternoon. We had a great time until we had to hike the 4 blocks back to Ronald McDonald house. Then back up at 4am to fly home Saturday... we were and still are exhausted! As always thank you all for the prayers and continued support. It helps give us the confidence to take on life with beautifully unique and complicated child. I wouldn't trade her for a perfectly healthy child any day she has made me into the woman & momma I am today.
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| The tab house @ RMH. Built by an Eagle Scout and donated to the house. |
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| Just a swingin' with her daddy. |
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| Gabby sliding on the playground. |
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| Our trip to the zoo. Hanging out with the elephants. |
