Bay St. Louis/Andrus Mac is 2

We went to the Cantrelle family Coast house this past weekend to spend time with family, celebrate Andrus' birthday and have a mini vacation. We arrived Friday afternoon and Uncle Matt took Rylee, Danny, Shannon and Andrus on a long boat ride in the Bay. Rylee was beyond excited and Danny and I knew we had to be very cautious with what she did and how she did it with her spleen and low platelets. I tried to remind myself that she is only 8 and just wants to be a kid!!! She fished, swam and jumped into the bay, played on the waterslide and had a BLAST! We had a birthday cake for Danny and Uncle Matt with Andrus and family Friday night. She jumped up Saturday morning at 7:30 to get on the boat and go fishing with Uncle Matt and Danny. The birthday party started at 11:00 and some rain moved in so we all moved into the house but that didn't stop the fun! Between breaks we jumped in the bay and laughed and talked and enjoyed our surroundings.


She loved it when Celia showed up and they were like two peas in a pod together. They stayed up night fishing until about 1:00. She even enjoyed her Uncle C.C.'s girlfriend Amy. She has advised us that she still has to adjust to her, but all in all she gives her two thumbs up. She is very possessive of her godfather and thinks the world of him! Sunday was terrific as well. We watched the soccer game, jumped into the bay like the kids, ate crabs and shrimp and Shannon and I had the beat tear jerking laughs ever. It was bittersweet to leave! Can't wait to do it again. Rylee did get a few bruises due to her very low platelets, but it was worth it just to see her smile and be a kid!!!




- Posted using BlogPress from Brandi's iPhone

GI follow up appt

Met with Dr. Monagus today so he could check Rylee since her last scope on June 9th. We were greeted by a student Dr. Who just so loved Rylee's Team Jacob shirt!!! She went over how Rylee has been doing and her blood work and then we waited for good ole Dr. Monagus. Rylee loves him! He was not very pleased with her platelet level. It is at 51,000 and has dropped from 82,000 since June 9. He gets worrisome when it starts getting back into the 40,000 range. He is going to pass along the lab work to the hematologist Dr. Morales and see if another lab needs to be done before her next scope on August 4. Normally we do labs upon admit the night before. Danny and I both think he will discuss proceeding with the IVIG procedure that was originally scheduled May 30 but never went forward. I talked to him about surgery and what we are doing to get that rolling and he is looking into it for us as well. We also discussed her stimulation testing and her weight and height. My little girl is eating too many cookies at Nana's and with Daddy. I'm sure this won't go over very well. Since she can not be very active with her spleen it makes it difficult for her to exercise her cookies off. He said he spleen shifted up again so it is more underneath her rib cage which is great but it is still very very large.

On another note we are looking so forward to spending time with our family at her nanan and uncle cam's coast house on the bay in Bay St. Louis. We will celebrate Andrus Mac's(my peanut) birthday, swim, lounge, boat and fish all weekend. We so need this getaway and I'm thankful to Shannon and Cam for letting us come stay with them. Nothing betterhanging with my family on the water!!! Dr. Monagus told us to have fun, be careful and watch out for fish hooks while fishing! Danny bought her a wet suit, life jacket, fishing hat and she is determined to have Uncle Matt take her to get a pole! Can't wait til Friday!
My baby deserves some fun!!!

- Posted using BlogPress from Brandi's iPhone

Rylee's stimulation test

Rylee had her stimulation test yesterday to check how her brain is producing hormone levels. They put numbing cream on her veins to help with the IV pain and it seemed to help with the pain but not the anxiety of it. Danny once again had no sleep from coming straight off of duty, but he was able to take her mind off of it by making shapes in the numbing cream on her opposite arm while nurse Lori inserted the IV. They gave her a shot of medicine to stimulate her hormones. She had blood drawn every half hour to check the levels of FSH and LH her brain was producing. If her brain is producing way too much then she is progressing rather quickly for her age and she will have to receive medication to stop it. We are pretty prepared for the outcome of the tests, but are still rather nervous. We left the hospital around 12:30. They told us that results will not be in for about 3 weeks and that will determine what steps need to be taken next and how quickly the steps need to be taken. This could be a culprit of her stroke, something other than stroke, or it could just be the normal which seems to be seen a lot in girls and boys in this generation. They do not attribute this to milk, chicken, etc which I know a lot of people are thinking. They do not know a cause, but Danny is blaming it on Madonna! Lol that made the Dr.'s crack up!!!! She has her follow up GI appt tomorrow so we hope or good blood results!!!!

Everyone has been asking about my sweet Maw Maw. She is home, comfortable and surrounded by great care, family and all the seasons of Everybody Loves Raymond. She was very happy to see all three of us yesterday and wanted us to stay longer but she wanted me to go home and take care of Rylee and Danny. I will be visiting her again tomorrow. I'm soaking up the smiles and the I love you's!
- Posted using BlogPress from Brandi's iPhone