Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Brianna UPDATE: 1-11-08 Well just when i get to the point of allowing satan to try and sabotage His plan for Brianna HE steps in and shows me His plan. seems yesterday Brianna's pediatrician spoke with Cleveland and has lined up all the necessary labwork and even the biopsy that is needed to be done here locally. also we are going to be going to Rainbow Babies and Childrens rather than Cleveland Clinic and Brianna can get in much sooner. The nurse will be out today to draw the labs. Once her pediatrician has the lab results she is starting her on the steroids that she needs. she can't start the chemo until after the biopsy that truly confirms the wegener's. He has spoken, i have heard and prayers have been answered. Brianna is on her way to the best treatment i can find.....PTL and thank you ALL for all your continued prayers. UPDATE: 12-28-07 well today had it's pros and cons. the cons are they were unable to do her CT scan this morning. after poking brianna 10 times they never got an iv in her for the contrast so they sent us on our way to her pediatrician appt. the pediatrician was also angry but we have a new appt. scheduled for Monday at our local hospital and they have always gotten an iv in bri on the first try. needless to say she isn't going to be happy being NPO again but this time it will get done. the pediatrician also told me bri set a new record in her office this am....most rxs written for a single child during a single visit. well by the time she did all her rxs for med refills, an additional antibiotic rx and rxs for lab draws by the home nurse bri now holds the record. the most awesome news is bri's pediatrician is 100% sure bri does have wegener's granulomatosis and is referring her to Cleveland Clinic for the workup. this hospital/clinic is world renowed when it comes to vasculitis and rheumatology. now i just have to start the fight to get the approval from her insurance for out of state care. i did learn from kim who to go to so hopefully it won't be as long and drawn out of a process as it was doing it for kim. bri is still doing well and we just want to keep her infection free so we have no more flare ups until we can get her on the correct meds to treat what is truly wrong with her. thank you all for your continued prayers, love and support of Brianna and our family. UPDATE: 12-20-07 well as all roller coaster rides go this mornings update has me totally frustrated and no belief in what is going on with the professionals and brianna. yesterday they started her tube feed with half pediasure and half pedialyte. well this am the feeds have been stopped throught the night and she is back to NPO. seems she vomited. oh well now my baby girl has gone a week without eating....we took her out of here at 7:30am last wed. morning. i am really discouraged as the post where i mentioned she did NOT have MRSA it was psedomonas well guess what now it IS MRSA in her gtube. she continues to have the wonderful antiobiotic diarrhea and all i can say is if this is the case better they have her and get to change her than I. sorry but i haven't talked with any of the doctors except one time when i spoke with Dr. Z re starting steroids. i did suggest with all the vomiting (again Bri has never been a puker with her reflux even) but is an awesome burper that could put a grown man under the table. ok i know she has an infection but i still feel they should be a little more aggressive as diagnosing the vasculitis disorder that also exists. i did suggest they do an endoscopy and make sure there is nothing going on there as far as worsening of the GERD and also make sure she doesn't have gallstones on top of everything else. my raphael had gallstones at 14 months old and had to have his gallbladder removed. guess i am just making stabs in the dark in order to help my daughter but after a week her chest x ray is no change and she is still sick. thank you all for keeping her in your prayers. UPDATE: 12-17-07 I know God is answering prayers being sent up for Brianna. the doctors started her on steroids yesterday and with her very rough night last night I have to share that her hemoglobin that was 8.7 after the transfusion is now up to 10.9. this is the highest hemoglobin level Brianna has ever had. T think the doctors are finally listening to the Great Physician and actually beginning to see that Brianna does not have aspiration pneumonia but due to the infection in the PIC line it triggered another issue...the Wegener's granulomotosis that Ihave suspected forever now. please continue to pray for Brianna as she is still having respiratory issues including pulmonary edema, wheezing and lung problems with a fever and the continued diarrhea. the nurse said she wasn't herself today and was sleeping a lot more but appeared comfortable. thank you for your continued thoughts and prayers for my little girl. UPDATE: 12-14-07 well mommie just spoke with a resident (one that has never seen brianna before and does not know her history just what she read in the chart) and literally scared mommie to death. this resident says brianna is sicker than she was back in Nov. when admitted...septic....DIC.....they have called in oncology/hemotology, infectious disease doctors now all on consult. mommie is literally living on the edge of my faith at this minute and praying for my baby girl. the good news is following the blood transfusion she had enroute to Hurley her hemoglobin is up to 7.something but her other labs are still low.....not really sure what is going on but know i am praying and oncall if i have to go be with Brianna. thank you all for all the continued prayers. sue UPDATE: 12-12-07 Brianna was taken out ems this am and then transferred back to Hurley PICU via ALS....pneumonia again.....still....her hemoglobin was 5.2 and her hematocrit 2.1 they were giving her blood in the ambulance when she left the local hospital. i am home as i have Robyn having a crisis with her bipolar and know i am needed more here right now. any extra prayers are appreciated thank you and love . sue UPDATE: 12-4-07 Brianna spent a week in PICU at Hurley hospital in Flint. Brianna and i spent Thanksgiving in the hospital and dad was home to fix the "feast" for him and our other 8 kiddos. she is home now finishing her iv antibiotics and has a follow up pediatrician appt. monday. she now has oxygen and being monitored 24/7. she came home this past wed. and i wasn't home but an hour and a half and UPDATE: 4-21-07 Today Brianna had her surgery. she is one very po'ed little lady as we restricted her movement big time. she has already tried rolling over and climbing out of the hospital bed before we even got home. surgery went well and the doctor released abductors, lengthened hamstrings and released heel cords. her new "pants" for the next 8 weeks. thanks for all the love and prayers for our brianna and children and family. sue UPDATE: 4-10-07 Brianna saw the orthopedic surgeon yesterday and as long as the anethesiologist will accept her the ortho surgeon will do hamstring and heel cord releases. we meet with the anethesiologist tomorrow. prayers for this are appreciated. love, sue UPDATE: 4-2-07 i made an appt. today for brianna with an orthopedic surgeon for April 9th and hopefully he will be doing the tendon releases she now needs following the selective dorsal rhizotomy,  leg braces and the therapy so our little dynomite WILL again walk.   His love and mine, sue PTL after being admitted yesterday afternoon, being NPO til this am the doc's PA came in and said all you need is a new Y port connector. the PEG she has in has a mushroom and therefore you can't "just deflate it". so stupid me asks her how they take it out.....we put emla cream around the stoma and PULL it out. well needless to say when the time comes i will do it myself. i have emla cream (remember i do medports) and i also have tylenol with codiene i will give her some before i take it out....at least we have 6 weeks for this. thank you all for your thoughts and prayers for Brianna and our family. we are the blessed ones. sue Yesterday: well i knew "my" plans were going too smoothly. seems Brianna's PEG tube broke and can only be taken out/ put back in surgically. SO we are headed to Hurley for admit today and hopefully surgery tomorrow. i know better than to make plans without consulting HIM. will be offline again. love to all and thanks for keeping my family in your prayers. sue UPDATE: 3-13-07 well tonight Brianna and i are home. it has been a very long last 3 weeks and i have watched as my daughter has gone from a little girl in a coma with renal failure to a smiley recovering little girl now with a gtube. we also have a new diagnosis...SMA (spinal muscular atrophy). this is a whole new diagnosis for me and just adds to her "former" diagnosis' one more....FAS, FTT, spastic quad CP, legally blind due to congenial glaucoma, GERD, microcephalic, nonverbal, dev. delayed, etc. etc. i just thank God for another day and now live this minute and cherish it. thank you all for keeping our Brianna and family in your thoughts and prayers. sue and family UPDATE: 3-7-07 well i am home right now. brianna has been in the hospital since feb. 18th with renal failure. came home last night as tim and robyn and makenzie left at 4am this morning til friday night for the FFA state convention. they needed this get away after all we have been through. brianna is still holding her own. they did do the gtube monday. she is still cathed and now also has MRSA in the urine. i talked to them this am and she didn't tolerate the gtube feedings last night so who knows what is next. she got a blood transfusion as her hemoglobin was 7.4 yesterday. to add to it all she now has MRSA in the urine also. with the power outage and restoration we had a surge and it fried our dishwasher, two direct tv receivers, microwave, coffee pot, one 19 inch tv and our furnace. our furnace has been repaired so we have heat and tim and the kids got to come home from 4 days in a hotel room. taking it one minute at a time. i will got back up to the hospital sat. sending prayers and love to all. sue UPDATE: 2-17-07 took brianna into the ped today as she has lost 9 lbs since her surgery jan. 29th due to reflux...it is back and worse than ever. the ped put her on zantac and reglan and she will be getting a gtube (again....hasn't had a feeding tube for 3 yrs) next thurs.   thanks for keeping our little one and family in your prayers.  sue UPDATE: 2-2-07 Bri had the selective dorsal rhizotomy done this past monday.  she went into surgery at 9:30am and was finally out at 7pm that night. the doc discharged her wed. and we are now home.  she is doing awesome.   her little legs (hips) are so loose it is awesome.  she will only need releases behind the knees now for the contractures.  thank you all for all your prayers for her and our family.  life is good and God is better.   sue UPDATE: 1-28-07 headed downstate tomorrow to the Ronald McDonald House as my brianna is scheduled for 8 hrs of surgery on monday. she is having a selective dorsal rhizotomy done. she will be inpatient for about 2 weeks. (rehab following the actual surgery). i am plannning on staying downstate through this week and the actual surgery. i hope to get her set up on the rehab floow and then come home for a couple days to make sure all is well here. time will tell and i know His plan will rule no matter what i plan. i just know i have a couple kiddos here that are already having anxiety issues knowing i am going...(one being my robyn who is doing well BUT as she says "you are my main support person right now".) i won't have puter access probably but will try to find one. keeping all in my thoughts and prayers. sue Re-added: 6-3-06 went to the ortho surgeon yesterday for myself and brianna. i am now headed for an MRI this coming friday for soft tissue mass in my elbow and bri is headed for surgery to release her abductors, achillies, adductors and hamstrings. there was also hip dysplasia noted on the left. she has now regressed in her walking due to her cerbral palsy. she will also be having a baclofen pump put in in the near future. brianna will be 13 years old tomorrow and is such a little bundle of dynomite. thanks for all who keep our family in their prayers. sue UPDATE: 5-1-04 we are now home from taking 7 of our 10 kiddos to the pediatrick neurologist. all had great checkups and some had minor changes in meds. the doctor gave us an order for bloodwork for Patrick and we stopped at the lab and had it drawn. they are testing him for Angelman's Syndrome. in time we will know the results. Aaliyah and Heather both received prescriptions for hand splints to help their little hands so they don't suffer contractures. Both girls have cerebral palsy. Sean was given a prescription for a protective helmet as when over stimulated and/or frrustrated he is a severe head banger. MaKenzie had Adderall XR added to her night time med for sleep insomnia due to prenatal cocaine exposure. Brent and Brianna had no changes but the doctor feels both are making wonderful strides and just continue what we are doing. same meds and dosages for now. Gabriel will be seen in August as he was just seen this past February. We stayed overnight at our daughter's as this am tim and i had to be in Detroit for finger printing as we are getting everything in order so we can go to Brazil and finalize his adoption. Thank you all for the prayers for our children and all the children. We serve an awesome Father. sue UPDATE: 4-30-04 small update. today we go downstate for the ped. neurologist appts. brent, brianna, sean, heather, makenzie, patrick and aaliyah will all been seen for follow up. will be staying overnight as tomorrow morning we have to be in Detroit for finger printing for Gabriel's adoption finalization. also hope to see our newest grandson while we are down there. he is a week old today. praying for all and Christian love, sue UPDATE: 3-2-04 hubby is enroute back from Shriner's Hospital in Erie, Pa with brianna and heather. as we were told by Shriner's Hospital in Chicago, Shriner's in Erie feels there is really nothing else they can do for her so she doesn't need any follow up care except in a year just to check her hips and make sure they haven't popped out. UPDATE: 2-5-04 Brianna and Heather's appts for Shriner's hospital is scheduled for March 1st and i pray their's isn't cancelled and/or changed. if only people knew and understood what we go through to keep our appts for His children. UPDATED: 12-14-03 Brianna is status quo. she has started saying a couple words. "anna" and "dad" she is such a funny little girl. always so happy. her mic key button came out during sleep about a week ago and we decided to leave it out at the present time as she is doing so well eating and she is "getting to fat" for the size 6 diapers. ADDED: 10-27-03 Condition: Former preemie, fetal alcohol syndrome, congenital glaucoma (legally blind) inutero heroine exposure, microcephalic,failure to thrive, gtube fed, spastic quad. cerebral palsy, nonverbal, developemental delays, lives every moment to the fullest. Prayers for continued Divine intervention as she strives to reach her fullest potential. God is good. History: Brianna first opened her eyes and saw the light of day at 6:06PM on June 4, 1993 at Hutzel Hospital in Detroit, Mich. She was born on her aunt's (Sues sister, Peggy's) birthday. Bri was a preemie and had many strikes against her from this first moment. She weighed a mere 3 lbs 13 1/2 oz and was 17 inches long. Brianna's fight for life had begun. Being prenatally exposed to alcohol and heroine and her birth mom having gonorrhea Bri's biggest battle began...LIFE. Brianna demonstrated what a strong little girl she is very early and continues to daily. Due to her early birth and the prenatal exposure to substances Brianna has fetal alcohol syndrome, spastic quad cerbral palsy, microcephaly, failure to thrive, nonverbal, legally blind due to congenital glaucoma and could lose total vision at any point in time, mentally impaired, ADHD,developmentally delayed ( I always like this dx and think right why not with all that is in her life). Bri is ambulatory, in fact before surgeries on her legs and botox injections she did naturally what many a ballerina pays big bucks to do..Yes, she was a very adept toe walker (no toe runner). Throughout the past 4 yrs and numerous procedures she now walks flat footed with the help of full leg braces and AFO's (even casts didn't stop this little minnie mite-in fact during serial casting at one point she even took the casts off). Due to the lacking verbal skills and the fetal acohol syndrome Bri is a very bad head banger when frustrated and/or overstimulated. She also grinds her teeth and drives her older siblings crazy. Even at her young age she knows how to get to us. Brianna is a tiny package of dynamic energy proving that "Good Things Do Come In Small Packages" with a smile and twinkle in her eye that tugs at any heart that is priviledged to know her. She is the light of our days and the warmth of our hearts and we are blessed we were chosen to be her earthly parents when her biological parent's rights were terminated and she became our daughter forever and always on July 18, 1996 with a judge's signature on the final order of adoption. Brianna attends school at the HLC in a classroom for severly multiply impaired chilren where she receives her therapies as well. Love you Brianna Leigh and thank you for teaching us what life is all about. WE LOVE YOU..Mom Dad and Your Brothers and Sisters.....