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Tuesday, August 11, 2009 6:13 PM CDT Hello to everyone who still checks in on Isabella! :) We are up in Minneapolis again this week for Bella's six year post transplant checkups-- Can you believe that?! We are so amazed at everything our little girl has gone through these past years, she is sooo amazing! Her birthday will be Saturday, August 15th- 7 years old and going into the first grade! We are so proud!
Today we went and saw Dr. Walker, who did her hip, knees and tibia surgeries last summer. Her xrays looked so good and there is definate correction on her legs so far. We agreed with his decision to keep the instrumentation in for 4-6 addtional months and do more xrays at that point.
We also saw Dr. VanHeest who did Bella's hand surgeries three years ago. She prescribed a splint for her left hand as the range of motion in her ring and middle fingers are still pretty limited. Bella doesn't mind her "hand pajamas" and picked hot pink for the straps (go figure! :)
We were lucky enough to get a room at Ronald McDonald house so Isabella has been having all kinds of fun with the activities they have available here. Tomorrow we have the day off since she will not be getting her instrumentation removed this week, so we are going to make a trip to Como Zoo and have a picnic. It should be a great time!
I know it is far and few between that we have the chance to update Bella's journal, but hopefully we will find time to give you all updates on the rest of our visits this week. If not, please accept our apologies, but as always, no news is good news! :)God Bless!
Tuesday, January 13, 2009 11:06 PM CST Greetings to all. I realize that we have not updated Bella's site in some time, but I will attempt to provide the latest updates and important information. Bella survived just over seven weeks in her hot-pink casts. At the midpoint, she was allowed to walk in her casts. With the affixation of clunky blue walking shoes, Bella was soon cruising around. While not the most expiditious way to travel, we were elated to see Bels up and walking again. The entire family found a great deal of fun with bathroom issues as well. For the most part, Bella required help going to the bathroom. Imagine me squatting down and holding her pink casts as she went to the bathroom. Those of you who know Bella understand that she sings almost constantly. The girl's life is a musical. Now picture Bella singing about pink casts, princesses, food, and whatever else came to her mind as she sat on the toilet. If only we had recorded it all. Bella has healed amazingly and continues to improve every day. After the surgery, she has a new flexibility that can only be described as unorthodox.She does the strangest things with her legs. Bels started kindergarten this year as well. The girl loves school which is awesome. She is a good student and a sincere and loyal friend. The girl is all heart, though her big brother may be inclined to disagree. She has also been learning "sight words" in an effort to learn to read. As parents, we always wish for the best with our kids. When Bella was first diagnosed, little could be offered at times with regards to future expectations. The research had only a limited number of years as a reference point. However, Bella has exceeded the expectations of many and continues to blossom into quite the energetic, charismatic, and loving little girl. She makes us laugh daily and will most likely never know how much she inspires us. Unless she reads all of these entries some day and decides that her dad was a real "wind bag". The hips, knees, and ankles were last on the list of major surgeries for Isabella. She has follow-up visits this summer as usual, but nothing else to worry about but being a kid. I will try to talk Karen into putting up some pics of Bella's casts as well as pictures from her princess tea party that she had for her birthday. Again, thank you all for checking in on Bels, Bella, Boo, Isablla.....God Bless.
Thursday, June 5, 2008 9:36 PM CDT Bella seems to be regaining her "self" as she continues to be free of more wires and prescriptions. We were told this morning that Isabella is a full day ahead of schedule. For those of you who know how determined Bella can be this should not come as a surprise. The catheter came out this morning in preparation for Bella's new hot pink casts. The catheter was causing quite a few disagreements as it made the girl feel like she either had to pee, was peeing, or just could not finish peeing. Once free of the catheter, Bella got a visit from the casting team. The cut off all of the old soft casting and cleaned her legs up. It was the initial time that Karen and I had the opportunity to see Bella's surgery incisions. I have two minds about seeing her body in such a state. I feel so strongly for her that she has to go through something so traumatic emotionally and phyically. It is difficult to see her little body broken in order to be fixed. However, I also know that this surgery represents an improvement in Bella's life once the healing is complete. As parents we are often faced with decisions that we must make for our children. For as tough as certain decisions are, I know that as she grows older Bella will let us know that we made the right choice for her. By noon, or shortly after, Boo was free of the catheter, epideral, and had a new (and much smaller) set of pink casts. Throughout the day her mood continued to improve and we got more and more of our princess back. She was playful, joking around, and at one point charged me a dollar for a kiss. She told me that I was to "pokey" otherwise. The girl has such a great personality and we had sorely missed it as she began to recover from surgery. More updates to come!
Tuesday, June 3, 2008 11:14 PM CDT I realize that it has been quite some time since Bella's page has been updated.Karen and I get busy with school, kids and everything else in our crazy lives. I do realize, however, that this is no excuse to go so long without an update on our little princess.Without further hesistation, I give you the latest in the world of Isabella! Bella recently finished a year in the Pre-K classroom. She was very blessed to have a wonderful teacher in Mrs. Williams. She also enjoyed having Mrs. Tinglehoff and Miss Boltze in the classroom as well.The cognitive strides that Bella made throughout the duration of the school year were more than Karen and I could have hoped for. Her language and social skills showed so much progress.Although, her physical abilities on the playground scare her mother and me half to death at times. It is difficult to watch your daughter dangle upside down on the playground equipment. We have come to realize that we cannot shelter her from everything,including attempts to become a playground daredevil.I am typing this from Gillette Children's hospital in Minneapolis. Today, Bella underwent surgery on her hips, kness and the bones near her ankles. The surgery corrected issues in her hip that corrected dysplasia. She also had metal plates placed into both knees to correct the angle of growth. The final procedure was perhaps the scariest for me personally. Bella has a great deal of tibular torsion which required correction as well. The procedure calls for the bone above her ankle (tibia) to be cut in half and then re-aligned to ensure proper growth. A plate was then placed over each area to assist with growth. At the end of her five hour surgery, Isabella had six operation sites and a decent amount of instrumentation. She was also placed in a soft cast which goes from mid thigh to her toes. The cast has a bar near her ankles to limit her movement. She also has an epideral in place as well as an IV and a catheter. In a day or two, however, all three will come out and she will be recast. Bella will then receive casts from just below the knee and down. The bar will remain in place to limit movement.Bella decided on pink as her choice of color for casts.Anyone who knows Isabella knows that she would pick no other color! She is a princess after all! We will make out best effort to update more this week. God Bless!
Monday, September 17, 2007 10:22 PM CDT Hello everyone!
Summer has come and gone! Isabella had an amazing time on her Make-A-Wish in Orlando. She got to meet all of the princesses and Cinderella even made her a REAL princess on the royal carousel. She also got to meet Spiderman, her boyfriend! She was very starstruck and shy...so cute! We went on lots of fun rides and met many, many of the kids' favorite characters. In addition to the Disney parks, we visited SeaWorld, where the kids got to feed and pet dolphins and we saw some amazing animal shows. We also went to Islands of Adventure which has really fun rides for everyone. Isabella loved the river raft ride. We went on it first thing and got soaked! She decided she didn't like the feeling of her wet clothes and tried to strip down in the middle of the sidewalk! It didn't matter much though because not much later we were caught in an infamous Florida rainstorm! Nothing was going to ruin our mood though. We all had so much fun together and were so happy to see Isabella so happy. Thanks so much to Make-A-Wish and Bob's Watering Hole for making it happen for Bella.
We have to mention as well the amazing village we stayed in while down there. It was founded by a survivor of the holocaust who believes that every child's dreams should come true. It was truelly a magical place. There were things to do everyday for the kids. To find out more about the village please visit www.gktw.org.
Isabella recently started school again. Everett and I decided to send her to Pre-K instead of kindergarten right away. She just turned 5 two weeks before school started so we didn't feel it necessary to send her this year. We thought she would benefit from an additional year of socialization. We also thought she would make the transition to kindergarten more easily than to first grade after her hip surgery this May. Isabella went to school donning some cute purple glasses! While up in Minneapolis for her annual checkups, the opthamologist prescribed specs for Isabella and she is very proud of them.
One last note before we go. Isabella has been having some strange teeth issues lately. She lost her front bottom teeth rather early and the dentist was not concerned because she has permanent ones coming in. But then she started losing molars in the far back of her mouth as well. These also have permanent teeth underneath but are not usually lost until nine years of age. And the strangest part is when she lost the first molar it was basically just the shell of the crown. It had no root and was hollowed out. I kept it and brought it in to the dentist. He was equally baffled and his only explanation was that there is a disease where the gums degrade the roots of a person's teeth and he was going to look into it. Now on the other side of her mouth, the farthest back molar seems to have collapsed itself into her gums. We assume because the root has been eroded. The dentist said it would fall out within days, but now it has been a month and still it continues to deteriorate itself. It is unlike a cavity. It is not rotting away...it is merely going away. We put this out there to all other families with children who have Hurler. Has anyone else encoutered this? We have looked for answers and come up with none. Any information is welcome. Thanks!
God Bless!
Karen, Everett, Brady and Isabella Wall
Wednesday, June 27, 2007 3:08 PM CDT I wanted to put a quick note on here about Bella. In two days we are heading to DisneyWorld in Florida for Isabella's Make-A-Wish! She is extremely excited and even has an appointment to meet Cinderella!Karen and I have some time before classes start again and one of us will provide a thorough journal entry as to her latest happenings......and also some new pictures. Thank you all and God bless.
Tuesday, June 26, 2007 11:41 PM CDT I hope all of you who still check in on Isabella know that no news is good news! Isabella finished preschool in May and has been anxiously awaiting her trip to Orlando. She has been granted her wish from Make-A-Wish to go to Disney World and meet Cinderella! We leave Friday morning. Bella is so excited and we can't be more thrilled for her. She is doing amazing health-wise, with no concerns to mention. Her hip surgery has been postponed until next summer because her surgeon went to Europe for further training. After our trip to Orlando I promise to get new pictures up for everyone to see! Pray all is well for everyone else. God Bless!
Tuesday, November 28, 2006 10:39 AM CST Wow--where does time go? Bella is doing amazing, I am glad to report. Her recovery from bilateral carpel tunnel release was pretty painless. She had a rough first couple of days but got the jist of how to use clubbed hands for a few weeks. She actually pulled one of her casts off within the first two days! It was scary! I held her arm straight as daddy ran around frantically looking for something to use as a splint. I think Bella could see how scared I was because she kept saying "I sorry mommy" on the way to the ER. But it all turned out okay. Her scars look amazing, she is such a great healer! We head back to the city in January. We are contemplating having her hip surgery (and hopefully her last major one) in May after school gets out. It isn't a pressing issue immediately but one that needs addressing soon. Dr. Walker is worried that if we wait too long to 'fix' the displasia in her hips that into adolescence she will experience bad arthritus. So we will see what decisions are made and keep everyone up to date.
I wish that I had hours to sit and type out all of Isabella's daily anecdotes, but that is not the case. Perhaps her family and friends out there can share some of their favorite funny Bellaboo moments in her guestbook! Wishing everyone a wonderful and safe holiday season! God Bless!
Tuesday, August 22, 2006 Updated pictures--wish I could put more than three up at a time!
We leave for Minneapolis in the morning. Bella has her surgery Thursday morning at 8 am. We have tried to explain it to her as much as you can to a four year old without freaking them out. She is excited to have her friends sign her casts. We will try to keep you all in the loop as she recovers!
The picture on the main page is Bella all dressed up on her birthday last Saturday. She got a "Snowing White" dress (she loooooves to play dress up).
God Bless!
Friday, August 4, 2006
I was hoping to have new pictures ready to post when I got around to journaling, but I can't say its true. We will get to it sooner than later tho! I thought I should give the good, bad and ugly on Isabella's most recent visit to MN though.
She saw everyone, as she does each year. And many dubbed her 'boring' since she has no significant problems at this time. (We loooooooove to hear she is boring from the doctors!) Her heart valve still has slight thickening, but not worse than last year, and nothing that would cause problems. Her eyesight and vision are both normal. Her neuropsych eval went well, her IQ is within normal range. The only bad news we ever get is from the Ortho docs. And this time was no exception.
We did get good news about her spinal fusion. It still looks great and has not yet hindered her growth. She is at the 50th percentile in height! In Hurler standards she has to be a giant or something! haha We saw Dr. VanHeest, whom is the hand specialist. During Isabella's sedation for her MRI, they also performed a test on her hands and wrists called an EMG. This uses electric shocks to test how well messages are sent and received through the hands. Many kids with Hurler get carpel tunnel and buildup on the tendons of the hands, thus creating the infamous 'claw' hand. Well this test showed that she has minimal if any sensory from her fingertips to her brain. Her nerve is so pinched that nothing is getting through. The dr. said that if you or I had this degree of CT we would not be sleeping through the night. I told her Bella has complained maybe once about pain in her hands ever. It would seem that because it is something that has progressed slowly over time, she has just accepted it as part of her daily life. It breaks your heart! Dr. VanHeest insisted Bella get surgery on her hands within 6 months to salvage function. Everett and I were very surprised to say the least and talked about what would be best for Isabella. She is so excited to start school this fall and we didn't want to take that from her because of this setback. So, we wanted to get this surgery done as soon as possible in hopes that she could start school on time. The surgery only requires one night stay in the hospital, but she will be casted for 3-4 weeks following. And because of non-use her hands will become very weak during this time. She is scheduled to have the surgery August 24th at Fairview. Although we are scared and sad, Everett and I both agree that if Bella can handle it as she always has, then we have no room to gripe! I just hope that she can still attend school as her heart will be broken if it doesn't work out.
Keep her on your minds, in your thoughts and prayers. Especially during the weeks following surgery as I'm sure her frustration with having two disfunctional hands will rise and rise!
More to come..as well as pictures!
God Bless!
Wednesday, May 24, 2006 6:55 PM CDT After promising to make more frequent journal entries.....! Sorry all! Our life has been blissfully "normal" and we have been loving it. Bella restarted her immunizations in March and had her second round the beginning of this month. She breaks my heart because she goes in there so bravely. She sits on my lap and tells me that she won't cry. I told her it was okay to cry, but she insists she doesn't need to. She whimpers slightly and proudly displays her bandaids, telling everyone that now she won't get sick. She continues to do well in all areas of therapy. She enjoys going and usually is very cooperative for all of the activities. Everett and my wedding is fast approaching. Isabella is beside herself with excitment. She says she is going to marry mommy. Uh oh! Hopefully she won't shove her way between us during the kiss. :) She will look so gorgeous in her dress and tiara. She knows she is a princess! We practiced being the flowergirl the other day and she insisted on taking one petal at a time and bending ALLLLLLLLL the way to the floor to set it gently down. Then got up to repeat the process. Each petal had to line up perfectly with the last. As you can imagine, the pastor would retire before Bella got down the aisle this way, so I showed her how pretty the flowers were when they fluttered to the floor. So now she tells everyone she gets to 'throw flowers at the wedding'. She and her brother have been practicing their tango for the dance as well-haha. So cute!
Our annual appointments are tentatively to be scheduled the week of July 17th. We thought we'd try to get up there earlier this year. We usually don't go until after the kids' birthday near the end of August. But, we plan to move the beginning of July, so it will be nice to let them have an adjustment period before school starts in the fall. We will make sure to get an update overview of how all of her appointments turn out, and of course some pictures of her and Brady doing the tango! God Bless!
Sunday, January 29, 2006 10:53 AM CST After five months of telling ourselves that we needed to update Bella's site we have finally gotten the task accomplished. Our last entry, Bella had just completed her two-year post transplant checkups and was still in her brace. The brace remained on until September and Bella's back continues to both look and heal wonderully. The most exciting part of Isabella's life has been her commencement of pre-school. She attends twice a week for five hours. She was timid at first but has since become a member of the "milk club" and a friend to some of the other children. She does tend to gravitate towards adults, however. Isabella is a performer so naturally she loves singing and dancing at school. Her song skills are improving rapidly. In true Bella form though, her favorite song to sing and dance to is The Black Eyed Peas 'Humps'. Boo continues her therapy twice a week as well and no longer needs us to walk her back to play. There are occasions when she almost forgets to tell us goodbye! She is growing up so fast!Her older brother Brady loves that she is getting older and can play more exciting things. She loves to make action figures engage in all sorts of drama and is convinced that Spider Man is her boyfriend.From a father's perspective, I imagine that if your daughter has to have a boyfriend it may as well be a guy like Spidey!Karen and I will try to increase the frequency of our updates so that we can keep everyone in the know with regards to Boo. With school and a wedding to plan our lives get a bit hectice, but we will try to fill in the blanks. Thank you for checking in on our little angel and God bless!
Sunday, August 21, 2005 12:34 AM CDT Greetings to all!
We have recently returned from Isabella's two year post-transplant visit in the lovely state of Minnesota. As some of you know, Bella had to celebrate her actual birthday in Minneapolis. We are grateful that everyone could spend time with Bella and Brady in the days before their birthday. It seems that Bella with soon be making a racetrack of the house thanks to the grandparents! We started off the week with labs first thing Monday morning. I am unsure of why they draw labs with the initial visit as it sets a tone of sorts for the rest of the week. Bella seems to be quite wary of physicians and nurses after she has to be poked three times at the beginning of the week. Isabella forgives easily though and she was soon making nurses laugh and enjoying cheese and soda at clinic. I was thinking back to days past when we made our daily trip to clinic for a transfusion-Bella almost ate them out of cheese and lemon-lime Shasta. The ladies at the BMT clinic were aware of Isabella's birthday and joined us in the waiting area to sing Happy Birthday. They also gave her gifts. It was great that they took the time to remember Bella's day and help make it better than it would have been without their kind thoughts. The week was filled with the usual. Tuesday morning we had our follow up visit with Dr. Schwender. He informed us that Bella's back was healing in a fantastic manner. We had expected that Boo would be able to remove her brace at this point, but we were informed that she could now go to "half-time" with the brace. She has to wear it when she is being really active, which translates into wearing it whenever other children are present. She absolutely loves to not have it on though. At times she will do a little dance and smile just because she can. I can not explain to you the joy that it brings Karen and I to hug her without the brace though. It is amazing to embrace her and feel her now flat back. After another three weeks, Bella can remove the brace entirely! We look forward to another landmark in Boo's life. I honestly feel that they can not issue a challenge to that girl that she can not overcome. The rest of the week was filled with good news. Bella's heart is doing well and will continue to do so and her lungs are adjusting to her newly straightened back. This would explain her coughing as her lungs adjust post surgery. She was x-rayed and observed and did a wonderful job during her neuropsych evaluation. Bella made large gains in her expressive language particularly. Although, she did refrain from telling the doctors "in your face" from the SpongeBob movie. If you have seen her do it you understand how hilarious it is. In summary, Bella's ears, eyes, lungs, heart and cognitive abilities are all fine. I know that this may be repetetive, but it is great news when everyone tells you that your child is "average" in some areas. We find relief in knowing that we do not have to return to Minnesota until Bella hits her three year mark post transplant. There is also great relief knowing that Bella is loved and supported and cared for by so many people. She has a smile for each one of you! God Bless!
Friday, August 5, 2005 7:31 PM CDT Hey everyone!
Bella continues to recover from surgery. She has been back at her therapies. We got the sad news that two of her therapists would be leaving to pursue jobs within other school districts. Her speech therapist, Emily, will especially be missed as she is Bella's favorite EVER! I dont know how to explain it to Bella. She loves going to play with her. I know that the change will probably be harder on mom than on Bella- she seems to always adjust better than I think she will, Im just a bit worrier!
We got Isabellas annual schedule last week. She will have all of her checkups the 15th-19th. She has to have yucky blood draws ON HER BIRTHDAY! She doesn't realize it yet though, so this year I'll let it slide, but in years to come, we are going to make sure she doesn't have to suffer on her actual birthday! Hopefully RMDH will have room for us this time, they have been awfully busy the last few visits we've made. We hope to catch up to Taylor while we are there as well since last time we were there the poor girl had the chicken pox!! We will keep the site updated with updates after the checkups. Take care-God Bless!
Wednesday, June 22, 2005 6:56 PM CDT **NEW PICTURES**
Our trip to Minnesota went really well. Bella has been traveling in the car like a champ! Dr. Schwender was very pleased with the way her xrays looked. Everett and I were very surprised to see all the instrumentation in her little back! He also thought the site was healing up perfectly and gave her the okay to bathe in the tub again and go back to therapies...as long as we are not doing strenuous Physical Therapy. I even got permission to take her swimming!! Granted, she has to wear the brace, but it is such great news that she can share in a wonderful summer-time activity we thought she wouldn't be able to partake in! We are so blessed and so extremely grateful for how wonderful everything has gone throughout this surgery. We couldn't have asked for it to be any better! Thanks for checking in on Isabella-we'll keep you updated!
God Bless!
Sunday, June 19, 2005 9:35 PM CDT Hello all!
Bella is doing GREEEAT! She has been trying to get around on her own. She is a bit unsteady still so I follow her around like a lost puppy to make sure she doesn't teeter too far to one side and fall down! She is walking a bit cocked to the right though, and I don't know if this is normal since she has the brace and isn't sure of her new balance and such..I'm hoping she will correct her posture soon though..it would make the surgery seem uneccesary if she were to come out with new problems, you know? Her spirits are much higher since she came off morphine and has been able to move about more. When we first came home and she had to take all these medicines again she would fight and hit and scream and it took both Everett and I to get them down. Its sad, but we broke her and she is now grumpy but compliant upon med-taking time. It just goes to show AGAIN how she will adjust to anything. She is amazing!
We are leaving tomorrow afternoon to head back up to Minneapolis. This time should just be an overnighter though. Bella will see Dr. Schwender Tuesday morning. She will get xrays and he will assess her progress. We plan to see Todd "the brace guy" about refitting her brace just in case that is why she is leaning so badly when she walks. Everett and I are excited...in a weird way, I guess...to see Bella's scars without the bloody butterflies attatched. I know they will look wonderful-she heals so quickly! I hope to have some new pictures this coming week to post of Bella with her brace, or her "bracelet" as she likes to call it! I will get them posted as soon as I can!
We will let everyone know how it all goes when we return home! God Bless!
Tuesday, June 7, 2005 9:22 PM CDT Karen and I were just talking about our lack of journal updates as of late. I imagine that in our haste to leave the hospital return to Iowa, we forgot to let everyone know that we were "escaping". Bella was discharged on Thursday afternoon, but we had a final fitting for her brace scheduled Friday morning. The fitting went well and Bella's brace fits the best that it can. I question the comfort of the device, but I know that the purpose it serves will do wonders for our daughter. Bella did wonderfully on the ride home. She was in a morphine induced sleep for most of the trip, but was a rock star otherwise. She had to ride three hundred miles in her brace which had to be far from comfortable. She was also sent home with a few medications. We were silly to think that Boo's days of "all day meds" were over. The first couple of days that we were home Bella wanted only to lay on the floor and watch movies. She slept so much-cat naps mostly. The morphine made her irritable, which can be hard on visitors as well as parents. Karen and I spoke about whether or not she was mad at us for having put her through the surgery. Coupled with the morphine, our feelings were often bruised as Bella denied our requests for affection. I trust that Boo with understand her need for operations, IVs, and thousands of doses of medications. My heart almost breaks at times-holding her down for a blood draw or dressing change on her incision sites. The girl has two major incisions. Both are six inches or more and are healing quite well. It is amazing to see her back to straight as Karen and I have only known her with her kyphosis. Equally amazing is her height. The girl is at least two inches taller. Lately Bella has shown an increased interest in walking. Her legs still shake, but she manages to take a few steps. Today she even attempted to run up to me to scare me! She sat on the couch and blew bubbles with Mommy until they were gone I think. Her attitude is beginning to improve which is awesome! She is returning to her usual self. She is the source of so many smiles! I will always maintain that she is my hero. It is surreal at times. What children are subjected to. To sit at the hospital or Ronald McDonald House and speak with families who have children that have been transplanted. There is chemotherapy to contend with and fear of transplants not working to there fullest extent. These children are so courageous and forgive so easily those who have to examine and take blood and everything else that comes with their sickness. In a world where people are often mean spirited and rude and overlook their fellow human beings in need-these children and their families are a bright ray of hope and love. I apologize for this rant........and thank you muchly for checking on our beautiful Isabella! We will update again soon!God bless!
Wednesday, June 1, 2005 4:48 PM CDT Bella continues to do well. Night before last an aide on our floor volunteered to stay with Bella during his shift so we could sleep, it was great! Last night was back to four hours apeice though! I have to say that I'm glad we have each other though, I can't imagine what a person would do if they were alone up here-one needs to sleep eventually! Last night she did VERY well considering how she's been sleeping previously...or not sleeping rather! They had to remove her IV line in her arm yesterday because it had slipped out of her vein and was filling the tissue with fluid...not comfortable and not practical! So the question was whether to start all her meds orally or try to start a new line. Each option holds its own benefits and downfalls. Poking her again is an obvious down side and we would rather avoid any uneccesary pain for the poor girl! But the doctor was worried about keeping up on her morphine because taken by IV it takes only minutes to get in the system whereas taken by mouth it takes up to a half-hour, and if shes in a lot of pain and non-compliant it may be a battle even getting it in her mouth to begin with! So we agreed to allow them to start another line, but only one stick!! It took four to hold Bella down and they missed her vein! As they started fluid to test it her little hand bubbled up! We all couldn't feel worse and she's been taking meds by mouth ever since! And it seems that she is much much more happy and much more comfortable. It takes some coaxing and a bit of a fight to get her to take meds every couple hours but in the end its well worth it!
The 'brace people' came yesteray as well and mummified Bella to make a mold for her brace. They had gotten permission from Dr. Schwender to stand her up to wrap her in this ace bandage dipped in paper mache type gook and Everett and I thought Bella would be ecstatic at the opportunity to be out of her crib...but of course not! She hung her legs and gave us the wet noodle bit instead. So E and I hovered her above the crib as she got wrapped up instead. The brace got fitted today and its pretty cute to tell you the truth. Its purple with butterflies on it. The plastic is pretty thin-surprising us as we imagined something very bulky. There are some adjustments and fine-tuning involved in finding the best and most comfortable fit for her, but she needs to be able to be more active in order to find out what changes need to be made.
This afternoon they wanted some xrays of her in the cast to make sure it was doing its job and she got the opportunity to stand once again...and declined-LOUDLY! So instead she had to sit stick straight for her 'pictures'. She got some stickers and bubbles out of the deal so in the end she won...as she always does! Tonight will be a long one, but we hope to get out of the hospital soon and then we can sleep at RMH at least as a family! We will stick around the cities until her brace is deemed PERFECTO and be home as soon as we can! We love you all and can't wait for you to see how tall Bella is now! :) God Bless!
Monday, May 30, 2005 9:56 PM CDT Bella is still going strong! That girl refused to sleep through the night. Everett and I took shifts so we could both get some sleep but not leave Bella unattended. She would have shimmied her way out of that bed pain and all! She got her chest tube removed this morning and is much more comfortable without it. They gave her Versed (SP?), Valium, and Morphine for the procedure and she still had to be held by all four of us, and didn't sleep all day! She will take little 5-10 minute catnaps but then shes up again trying to charm her way out of the crib. I held her twice today trying to get her to sleep but its not that comfortable for her becuz of the way i have to hold her to protect her back. I even laid in her crib with her but with no luck! Her nurses are astonished at her determination to stay up FOREVER! They are trying to find an aide that can sit with her for a few hours so that Everett and I can get some well-needed shut eye, but if that doesn't work out we will do shifts again. She has to run down on the battery sooner or later...there are two of us--you'd think we could win this one! She was more awake today and being her silly self. She was singing songs in her tiny drugged up voice. She will be measured for her brace tomorrow and hopefully have it strapped on by Wednesday. Then she will be allowed to get up out of bed! Won't she be the happiest girl in the world?! She and I both! Keep her in your prayers and hope we all can get some sleep tonight! God Bless!
Saturday, May 28, 2005 4:40 PM CDT Firstly, there is a new picture of Isabella on this site. She has lost a few tubes and IV's so her appearance is quite different than yesterday's photo. The resident had informed us last night that she would most likely remove Bella from the ventilator.This is, of course, great news as she would be breathing on her own. The plan had been to take her off of the ventilator at around eight in the morning. I was a bit apprehensive when the phone rang at five thirty informing us that Boo would be breathing on her own by six thirty. I shared the news with Karen and we followed the ever familiar trail from RMH to the hospital. We arrived to a restless Bella. Her breathing was fine, but she was desperate to free herself of tubes and lines and the bells and whistles that accompany them. Within an hour or so they had managed to remove the IV near her groin that was monitoring her blood pressure as well as the IV in her neck. Both of the areas had been sutured, so extra care was needed. It was a bit more difficult with a squirming Isabella. Bella continued to fight to roll over and stand up for the next six hours! She would take a minute or two off from her struggles and each time we prayed that she would fall into a well needed sleep. Unfortunately for our angel she did not fall asleep until between twelve-thirty and one. Our nurse suggested that it may have been muscle spasms and she was given Valium to relax her. It must have served its purpose though and Karen and I were able to escape for a forty-five minute nap. Feeling recharged we are now currently back at the hospital. I would love to tell you all that Boo is sleeping like and angel, but she has been even more determined to stand up and flee the scene. I am not sure if she will fight us for another six hours before settling in, but we are at the ready for our beautiful little girl. Pray for quick healing and deep sleep. Karen and I appreciate greatly your thoughts and prayers.
Friday, May 27, 2005 5:45 PM CDT THANK YOU GOD! Our baby did amazing through her surgery. All of your prayers were heard and an angel hovered in that operating room today! Bella did better than anyone could have hoped for. Her 75 degree kiphosis is now at 2 degrees. Dr. Schwender said it may settle in but it is going to be soooo much better than before. She couldn't get her knees stapled because the bones are still too small, but the best news of all is that they were able to use instrumentation on her spine, meaning screws to hold it stable and that means she can be allowed to use a hard plastic brace instead of the full body cast!!!! This is fantastic news for Isabella. She won't be so confined from being her active self and she will be able to take it off to bathe! We are so thankful to Dr. Schwender and all of the rest of the amazing staff that made this possible for our Bellaboo. You are all amazing people--God's people--and we could not be more blessed! Bella is still intubated as she will be in quite a bit of pain tonight, but they are keeping her comfortable and asleep until in the morning. She will stay over in the Peds ICU. She will probably be there a couple of days and they will fit her for the cast by Monday so we will have it soon. The good doctor said her muscles will be very tight from the surgery and serve as a cast for the next couple days. We all know Bella and how fiesty and determined she can be though, so I hope she doesn't try breaking out of jail against the doctor's orders! :) I am so incredibly happy with today's outcome...thank you all again and God Bless!
P.S. I am going to try to upload a picture of Bella but she is intubated just so you are warned. She is still so beautiful with her fishy lips though! Keep her in your prayers...!
Friday, May 20, 2005 11:21 PM CDT *** NEW PICTURES UP!***
Today we took the clan to the Henry Doorly Zoo and had a great time. Bella especially fell in love with a cute orangantang (SP!?) who seemed to like her a lot too! She was peeking at the monkey through the glass and it came up to her and started licking the glass. Bella thought this was hilarious, giggling and telling everyone 'monkey licking'. It was great to see her in high spirits...but why wouldnt she be? Her surgery is officially less than a week away...but she's none the wiser. Wish E and I could claim the same. The butterflies in my stomach are of Jurrasic proportions. We are doing our best to concentrate on the long term outlook and not so much how hard the summer will be for her. We know she is in good hands up at Fairview and only ask that all of you pray your hardest for her during surgery and the subsequent months. Her surgery will be Friday May 27th at 8:30am. It will last approximately 8 hours. She will be in the hospital about 7 days and they will teach Everett and I how to care for her in her condition so we can bring her home. We will keep you updated on her progress....but for the time being enjoy the new pictures...God Bless!
Wednesday, April 20, 2005 10:50 AM CDT Wow! Sorry its been so long--still haven't managed to get those pictues up as promised! We have been so busy with school and all of Bella's therapy, I will really try to get them up as soon as I can!
Bella had bilateral PE tubes replaced on April 8th and seems to be doing really well with those. She did great with going into surgery and coming out of anestesia (SP?). An hour after it wore off I was chasing her down the recovery unit hall! She hasn't been eating well since then though, and I'm getting a bit worried. She has been fighting a spell of bronchitis the past couple weeks--those spring colds are the worst! We have been trying to take advantage of the warm weather as much as possible since Bella will be down for the count over summer vacation. Her surgery still hasn't been scheduled since they are trying to arrange it with both Dr. Schwender and Dr. Oglvei, so it may be pushed back til early June now. We were hoping Bella could go to preschool this fall, but she might have to wait and go later if her time in the cast cuts into September too much. We are so insanely nervous about the surgery...but I know that if that girl can do it, so can we! Keep her in your prayers! She is so active and loves to run and play and try to keep up with her older brother, I just hope this summer won't break her spirit. I'm sure it won't!
Bella has been making great strides in therpies. She speaks in full sentences and is understandable most of the time. She mimicks everything..unfortunately..and has taken a liking to the word "dammit" oops! We are planning a trip to the zoo in Omaha in May with all of Bella's aunts and her brother and cousin Karli. She will have a blast!
We will keep you all updated on her progress-thanks for checking in on Isabella! ~God Bless!
Thursday, February 17, 2005 11:07 AM CST Yesterday Bella had a hearing test and was pretty much non-compliant to the testers requests, and although it couldnt be measured perfectly accurately, she is on the border of normal for her hearing, but her tubes being blocked could cause loss of hearing for her. We then saw the ENT, Dr. Rimmel and he said that no amount of drops or suction is going to clear up her tubes, the lifespan of tubes usually is about a year and shes had hers about 18 months so really we just have to replace them. He wants to wait to see if they will clear up and tenatively scheduled us to have them replaced early April. We will also have an MRI done for Dr. Charnis just to check on the progress from her last one. So two more trips planned in the next three months...pray they both go extremely well for Bella!
We are heading home now with one more visit under our belts! Until next time America....God Bless :)
Tuesday, February 15, 2005 1:40 PM CST While Bella naps before her next appointment I thought I would update this on how her day has gone thus far. This morning we were dropped off at the wrong building so we hustled through the cold to be late at the orthopeadic office. First Bella had to get xrays done, which never used to be a problem, but now whenever she gets held down she thinks theres going to be needles involved, so it was a fight, let me tell you! She was stripped to her diaper and socks and had to have her pelvis, spine from the front and side, and her legs xrayed. Everett asked me to stop calling it getting your picture taken becuz now when we go to have family pictures done Bella will scream and run the other direction! Oops-My bad! Dr. Schwender is the orthapeadic doctor we met with, and although he is a really nice guy..he didn't have such nice news. It seems Bella's kiphosis (the outward curve of her lower spine) has gotten a lot worse. He told us that a "normal" curve can be anywhere from -10 to +10 degrees and Bellas is at +75 degrees. He told us that the natural curve of your spine occurs in the upper part, but hers is flaring at the bottom. This doesn't permit her to stand straight, and is why its so uncomfortable for her to sit straight in her carseat. A lot of Hurler children end up having spinal surgery to correct such a thing, but not usually until they are about 5 or 6 years old. Bella needs hers done in the next 3-6 months. He said that if we wait too long she will just continue to be pulled down by gravity making the column weaker and more curved. They usually operate when the curve is more than 60 or 70 degrees. Everett and I were baffled that it had progressed to this point becuz to us, seeing her on a daily basis, we thought it was the same, if not BETTER, when actually it is much worse. It just goes to show that Bella lets nothing stop her! We also spoke to him about her knees buckling in and the swelling its caused her joints lately. He told us about the new stapling they can do to help correct the bone growth in that area, and it looks as though both surgeries will take place late May this year. Please keep Bella in your prayers as this time nears...its 12 weeks in a body cast for the poor girl! (Lots of Blues Clues I speculate!)
After leaving Dr. Schwender, we had to head over to PWB to meet with Dr. Peters. After having such a hell of a time getting painless "pictures taken" we were certainly dreading the blood draw about to come. But, lucky for us Bella had tests done about a month ago back home and Dr. Peters said those counts would suffice YAY!!! So Bella didn't have any pokes today! Dr. Peters did a general physical and asked a bunch of questions, and addressed our concerns. Bella can restart her immunizations now and is okayed to start seeing a dentist as well. She got taken off of her Bactrim and we'll soon find out from the cardiologist if Enalapril can be eliminated as well-thatd leave us with NO meds!! *fingers crossed*
We went up for a quick visit to 4A to see all of Bella's old nurses and aides. Bella just kinda stared suspiciously at all these ppl googling at her, wondering how the hell they all knew her name I suppose!
This afternoon we will go see Dr. Charnis the neurologist and he will measure Bellas noggin to make sure its not growing disproportionately (is that word?!) and I know shes fantastic in this area...not to get #####..but my baby is SMART! :) Im sure this will be a quick and reassuring visit.
Tonight we might head out to the Mall of America and see what there is to see. Maybe Bella can go "weeeeeeeee" on the rides at Camp Snoopy. Tomorrow we have a hearing test and then see Dr. Rimmel about getting new tubes placed in Bellas ears. We will post more after we know more! Thanks for checking in on Bella...and as always God Bless!
Monday, February 14, 2005 10:06 PM CST Phone Number!!!!
Our number for this trip is 612-379-0189!
Monday, December 13, 2004 10:14 AM CST Greetings to all!
I know that the duration between journal entries can be a bit lengthy at times, but here we go! Bella continues to do very well with her therapies. As Karen mentioned before, Bella no longer needs us to accompany her to speech, PT and OT. She simply says "bye" and gives us a smile as she walks off to play. She genuinely enjoys her therapies for the most part and is fond of the therapists as well. Karen and I are noticing improvements in Boo's language skills lately. She is making a lot of new word choices and has taken to repeating words and phrases. This means that I must now watch my usage of the words "darn" and "heck". I write that sentance with strong sarcasm. I have to share a funny Christmas story before I wrap this up. Karen and I had Bella's presents on the floor and were preparing to wrap them with a few other gifts. We had purhased one of the various singing and dancing Elmos that are available. Bella was playing with it of course. We got her focused on something else and then wrapped the little red monster up. We were positive that at two years of age our little angel would quickly forget which package contained Elmo.Oh how mistaken we were! Bella kept going over the the gift and pointing. "Mo Mo" she would say as we laughed. It was a good moment for all. Elmo is now moved farther under the tree and we are anxious to see if Bella will remember where he is on Christmas day. We are excited for the holidays and will update shortly after I assume. We wish you all the best of holiday happiness! God bless!
Wednesday, November 3, 2004 6:48 PM CST **New Pictures!**
Hey All! I hope everyone had a fun and safe Halloween! Bella had a blast! She ended up really liking to get dressed up and danced around in both of her costumes. She was a ballerina by day, and when the chill of trick or treating settled in, she turned into a BoohBah. (An imaginary creature from a PBS childrens series) At first she was just a bit confused as to why we were going door to door, but as she realized what these strangers were dropping in her bucket,she got more enthused. At one point she exclaimed "more, more!" as we walked down the block. Poor Brady's head was just at Bella's bucket level (as the night wore on she was too tired to walk, so daddy had to carry her) and he kept getting conked on the head as they waited at the doors! No major damage though! :)
Bella has been doing well in all her therapies, and yesterday she looked up at me and she said "bye bye" smiled and walked back to the room by herself! I couldnt hold back my proud/sad tears. She doesn't need me!? I was reassured that she still needs me...that this was a good step in her independence...things I already knew, but yet still couldnt shake that she just walked off so sure of herself! I never thought Id be 'one of those moms' but alas I am! YAY BELLA!
Isabella has been given permission to go off Penicillian and Diflucan as soon as we run out. That will leave her on only two meds! Sufultrim twice a day only twice a week, and Enalapril twice a day. EASY! We are planning on making a trip up to Fairview in January to see the Orthepedist. We missed him at her annuals, as he was off on vacation. I hope it isnt a horrible winter. Driving north might show to be quite a hassle! Her nurse coordinator thought that perhaps the dr. could send details on what he needs xrays of and have them done in Sioux City and sent up to be reviewed, and I'm hoping this will end up being the case! Bella's back doesnt tolerate long car drives. Her kiphosis (SP?) makes her uncomfortable in her carseat. Even driving longer than an hour makes her very irritable!
We'll keep you updated on her progress! Hope you enjoy the new pics...shes changing so much! God Bless!
Monday, September 27, 2004 9:15 AM CDT Good morning!
So sorry it has taken soooo long for an update! I kept wanting to put up her new pictures, so I put off updating altogether. And I'm sorry to admit, I still don't have the time to get those pics up right now! I promise it will be sooner than later though! :) Isabella is doing great great great! She makes us so proud every day! She is going to St. Lukes rehab twice a week and getting PT, OT, and speech. She is usually very cooperative, and they have done some new things with her that I haven't seen therapists try yet. It's very educational for us! There are some activities she doesn't like to partake in, and she even threw a full fledged fit last Thursday. Of course, there was a group of students studying to become asst. PT there that day to watch her, and she threw herself on the floor and thrashed around screeching NOOOOOOO! She picks the most opportune times! It is only her second tizzy EVER so I'm not too concerned, but I pray it doesn't become a therapy staple with her. She also has a new AEA teacher, named Anna, who is wonderful. Anna taught special education for over 20 years, and is so sweet and patient. She is helping us by giving us pointers on getting BElla to sleep through the night. Everett and I both realize that with her being in and out of the hospital it has been hard for her to establish a good sleep pattern, but hopefully now that life is more 'normal' she will fall into sleeping better- for all of our sakes! Boo is getting Early Headstart Homebase on Mondays too. She is sooo busy! Hopefully next fall we will get her into preschool, and EHS will help get her ready.
New things Bella has been doing lately have been calling her daddy "Ebba!" Which is obviously her version of Everett, and is sooooo cute! He doesn't get as much of a kick out of it as I do. He said I must yell his name too much for her to catch on to it. HAHA! She has started to try to say "Karen" as well, with much coaching from her father. She is still trying to use the potty, and now tells us "ocky" when she needs her pants changed. Hopefully she will start telling us before she actually goes so we can make it on time!! Bella loves to play with her kitchen and play food. She will sit there forever and feed her baby. Then she sits her in her play stroller and says 'Walkkk' with much emphasis on the "k". She is so entertaining!
Well as soon as I can find a spare moment in this busy life I promise I will get some new pictures up of BElla. She is changing so fast and getting so big! Her hair is longer, and lighter in color, and she has gotten so tall! Hopefully you will all get to see soon! Thanks for checking up on her, and as always- God Bless!
Tuesday, August 24, 2004 9:38 AM CDT Hey all!
Isabella has recovered fabulously from her surgery. She has grabbed for her line less and less as time goes on. Her new belly button is beautiful and she loves showing it off! She had a birthday August 15th! Isabella is 2 years old! Hard to believe what shes overcome in her short two years! We got her a huge Blues Clues cake that she decided shed rather look at than eat. I got her a mini cake too, thinking that since she was sick for her first when its tradition to let them dig in, maybe shed like to this year. But she would have none of it! She poked a dainty finger in the frosting and took one taste- then she wanted down! She hasnt been much for sweets since chemo...we shouldve found her a cake made of slim jims and she would have dug right in!! haha! When everyone sang 'Happy Birthday' to her she glared at us...embarrassed she wasnt in on this song everyone else knew. I will have to get some pictures of the days events up as soon as I can! Everett and I started school again and Bella will begin to get new therapy sessions going at St Lukes Pediatric Rehab. Although she is doing very well for her age, nueropsych still suggested she get OT, PT, and speech three times a week. She will be a very busy little girl. Hopefully in Sept. early headstart will come for homebase to get her ready for school too. Im very excited for Isabella! She has such a promising future ahead of her!
Thank you all for checking in on Bella and we will surely keep you updated! God Bless!
Friday, August 6, 2004 9:34 PM CDT Greetings from Minnesota! We managed to drag ourselves up and out of bed this morning for Bella's big day. Karen got up at four for some reason and could not get herself back to sleep. I felt badly for her, but at least we did not oversleep. Bella did an amazing job of waiting for her procedures to start. She was in a good mood-flashing her smile and trying to escape down the hallway to the toy room. Or maybe she was just trying to escape? After speaking with doctors and nurses Karen finally got to put on the "bunny suit" and walk Bella back to the OR. I kissed them both and headed down the hall to the waiting area as Bella waved a tiny finger or two at me. We waited for all of the good news and were informed that her hernia repair had gone great and that her central line had come out smoothly. She made her way to MRI and before we knew it we were greeting her in recovery. They had placed some type of tube down her throat as a precautionary measure and it made her very horse. She had this tiny cry and it reminded me of her first few days in the NICU. At that time I thought it woudl be the worst thing that Karen and I would ever go through as parents. Bella came out of it extremely well, no crying or fussing. She relaxed on mom and eventually drank enough milk so that we could take her back to RMDH to rest. She napped for an hour or two and then was up wanting to go "bye bye". She was still shaky from the drugs but I took her for a stroller cruise to Dairy Queen for some ice cream. Like anything else in her young life, she took it all in stride. Every day she solidifies herself more and more as my hero! Today was the end of an awesome week for Isabella. As you have read in these journals we have received so much good news on her present health as well as her future. I have never been so happy to hear the word "average". We heard a lot that Bella was "just like any other kid" which in part is true. It is unfortunate that she has fought so hard just to be normal. Bella continues to steal hearts and brighten days with her smile.......she is an inspiration to her mother and I and although this past year has been tough on the three of us we stood united and overwhelmed with love and happiness at the end of this week.Thank you all for your thoughts and prayers and God bless!
Thursday, August 5, 2004 6:29 PM CDT Good evening all!
Sorry I missed the update yesterday. I actually typed it all up and the computer crashed so it didn't update and I was too tired to try to retype it all....so I'll give you the low down today!
Yesterday Bella had xrays done of her chest and a bone age of her hand. We found out they all looked great. Then we had a physical with Katie and a bunch of labs drawn at the clinic. Katie was pleased to hear how well Bella is doing! Then, in the afternoon we saw the opthamologist, Dr. Bothum. He was pleased with Bella. He said she still has slight corneal clouding, but it doesnt impair her eyesight. She is also slighty far-sighted, but that is common for all children her age. He said that Bella doesn't look like she will need glasses! (many kids with Hurler need glasses very early on)
Today we went and had our exit conference with Dr. Peters and he was SOOO happy with all the reports he's gotten over the week. He said Bella is doing GREAT! He examined her and we talked about the surgery tomorrow morning. He wants to make sure we keep fighting to keep Bella in therapies even though she doesn't fall into the technical delay catagory anymore (YAY!) with her disease he said we have to make them understand she stil COULD without help. He also wants us to try to make it up in January to see the orthapedist doc who is gone on vacation this week. He just wants to have any concerns addressed so that later it can be evaluated for any change if her kyphosis, or knees get any worse.
We took Bella to the Como Park Zoo this afternoon and it was fun. It's a free zoo with rides and they have a seal show. We didnt have time to watch the show, but Bella loved the monkeys and she giggled at the polar bear doing somersaults in his tank. There was this HUGE lion who was roaring really loudly and it was so beautiful. Then it started what seemed like hacking a hairball, and Everett made a comment about what if it was a mating call, and as if on cue, in came a lioness. It was really cool. Bella was trying to climb on the glass to get closer. She thought he was a big kitty to pet! yikes!
We couldn't have asked for a better week, and are soooo completely proud of our amazing daughter. Tomorrow morning is the big event. I hope they will let me take her back again. It was much less traumatic for everyone. We will definately let you know as soon as we have a sec! Please pray for a safe surgery and fast recovery. Love you all! God Bless!
Tuesday, August 3, 2004 4:03 PM CDT Isabella did WONDERFULLY today! She went nonstop and amazingly got only slightly crabby towards the end of our long afternoon. At 9:30am we began her neuropsych testing and she was really cooperative for the first hour and then began throwing everything they tried! She still scored very well and cognitively is 'normal'. Everett and I never liked that term, but today it was all we wanted to hear! Average is a score of 85-115 and Bella scored 96 on her communication! Her motor skills were a little lacking though, she scored 84. The doctors were VERY pleased with her and have high hopes for her future. They do want her to stay with intensive therapies until she reaches school age. They are going to recommend it to our insurance so we can pursue it outside AEA.
I have to interject with todays report just to say that last night while playing outside Bella learned to climb stairs all by herself. She even went DOWN a couple alone. She was so happy and proud that when we came inside to go back up to our room she climbed all three flights on her own! For those of you who know how long and hard we've been working on climbing stairs-this is a huge accomplishment to her! Now we have to get some gates for safety!
Back to our appointments....Dr. Shapiro was concerned with Bella's orthapedics and I noticed we actually don't have an appt. with an ortho doc so when we met with Dr. Charnis (peds nuerology) I inquired about setting one up; we were disapointed to find out he was out of town though. We will definately see him the next time around. Dr. Charnis was pleased with Bella's progress as well. He measured her head and its slightly on the high end of normal size, but with E's noggin....I have no worries ;) hehe
Then our last visit was with Dr. Salzman, who examined her hernia and explained to us how easy the procedure would be. So Friday at 5:30am we go in for repair!!! (and her line will be removed and shell have her MRI and eye pressures checked at the same time under sedation) YAY! He said its only about a 20 minute procedure in which he will make a small incision under the protrusion and pull all that back in, pull her abdominals together and sew it back up. She will also be given an innie again! She has to wear a bandage for 5 days and after that she should be able to swim and everything! He said that it won't look like a 'normal' (theres that word again!:) belly button for about three months. The stitches are all on the inside and they dissolve. Isn't that awesome news?! We have had such wonderful news so far I feel like my heart could burst! Isabella has really handled all the prodding and poking and weird faces gawking so well! She's taking her first nap of the day right now. I'm so proud of her.
Oh! And this morning she went potty on her toilet again! Whew! What a day! Thank you all for thinking of Bella and I will keep you updated as promised! God Bless!
Monday, August 2, 2004 5:02 PM CDT *Our phone number for the week is 612-379-9435*
Hello everyone!
Our first day of tests went really well. We didn't start til eleven since Everett and I nixed the carpel tunnel testing that would have taken place this morning. First, we had an EKG which was surprising quick. Bella tried pulling at the many connections at first but then we got distracted by bubbles! :) The results were normal. Then we waited a loooonng hour for the echocardiogram guy to show, but thankfully Bella fell asleep on daddy for a bit and was sleepy through the echo, which gave him a vantage of quiet and still baby! YAY! For the most part everyone looked pretty good on that too. We talked to Dr. Braunlin after and she hadnt gotten the full test results from either, but she said that the only thing that showed up that she was concerned (enough to bring to our attention) about was that Bella's miocardial valve and aortic valve were thickening due to the Hurler. She said that heart function was great and the rest of the heart was good from transplant, but she said its common that for some reason the transplant doesn't always help with thickening of the valves. She said that its mild right now and hopefully won't get worse, but if it does in the future they can give her a medication that would still enable her to be able to run around and participate in normal activities. [What happens when the valves thicken (with the muccopolysacharides building up) is it gets harder to hold the blood in each respective chamber.] Everett and I are hopeful she won't have further thickening, but are also relieved that its not uncommen and is treatable.
As far as appointments, our day was quick and painless! We have her neuropysch evaluation tomorrow and meet with Dr. Charnis and also a surgery evaluation that will determine if her Hernia will be repaired Friday. Keep praying....love you all! God Bless!
Monday, July 26, 2004 7:02 PM CDT Day +367
**Pictures updated!**
Yesterday was Bella's one year post-transplant anniversary! Yay Boo! We will head up to Minneapolis Sunday, August 1st. I'm both nervous and excited. I hope the week brings good news and great results. Friday Bella went to St. Lukes for her last routine labs. The ladies were all sad to see her go, and we promised to make it back for a visit. ONLY a visit though!! hehe
Make sure to check the pictures page for updated photos of Isabella, and we'll update when we find out more from Fairview! God Bless!
Thursday, July 15, 2004 1:05 PM CDT Day +356
Isabella has been doing sooo well! Her last few weeks of labs have been outstanding and today her hemoglobin was at 12.6! She is on a taper for her orapred since she isn't needing it anymore! YAY! We are heading up to Minneapolis the end of this month for her yearly and she will also FINALLY get her line out and hopefully they will be able to repair her hernia as well. We are so very excited to be this far in her journey. She has gone through everything thrown at her like such a little champ!
She is our Diva now though-boy does she know what she wants and tries her damnest to get it. I hope its part of the wonderful 2's and not a habit shes picking up! I was in WalMart with her the other day to pick up my pictures and Bella didn't want to ride in the cart. She vocalized this displeasure and so I stupidly let her down...the little terror went running away from me giggling. Unfortunately I had chosen that day to wear a lowcut tanktop and bending over to chase her around was a feat on top of keeping myself in my shirt! (Needless to say I won't make that mistake again!) I had to haul her squirming and screaming to the checkout lane and bribed her into quietness with a slim jim (she is crazy for those things!)
She's not always naughty though-Thank God! On Fourth of July Bella sat on my lap was we watched the fireworks and she gazed up at them and cooed "Wowwww...pwetty!" It was the best Independence Day EVER! I remember last year we were saying goodbye to everyone for our long departure north to start everything. We have so much to be thankful for!
Isabella continues her therapies and keeps making huge progress. She is talking up a storm-there's really no shutting her up anymore! My little sister, Halle has been staying with me this week and she taught Bella to smell her own feet and exclaim "Pewwwy, stinky!" Its hilarious!
Bella also got a new potty chair a couple weeks ago. She has begun to remove her own diapers when she's dirty and LOVES to flush the toilet. She asks all the time to go potty...although she just sits there. She doesn't quite know how to go on command, but her interest is definately there. How exciting!
We will update once we are up at Fairview and let everyone know how all of her testing goes. Pray for a safe trip there and back and for everything to go without a hitch! Thanks for checking up on Bella...God Bless!
Wednesday, June 16, 2004 11:22 AM CDT Day +327
Hello all! Isabella continues to do very well in all departments. She is enjoying the summer weather. Last night we went to the park and she went swinging FOREVER! She loves to swing! She even goes down the slide by herself..daddy up top and mommy to catch her at the bottom though! The look on her face is fantastic when she comes flying down! Her counts have kept themselves in check and we are really hoping she can get off the steroid she got put on in January to stabalize her hemoglobin. Last Friday it was at 11.7! We are planning to be up in Minneapolis late July for her yearly and hope to hear good news of her line coming out and her hernia being repaired. Her birthday would really be something to celebrate after such great things!!
Bella has been doing really well with staying with my Gma during the week while we take classes. She loves my Gma's dog, Bucko, and asks for him as soon as we pull into my Gram's driveway! She is learning new things everyday, and is starting to repeat words after only hearing them once! Yesterday morning I had jeans on with embroidered flowers and she pointed and said 'pretty mama' and I told her that that was a flower, and she looked at me and repeated 'hower' so matter of factly! I was amazed she picked it up sooo quickly! She continues with therapies and we plan to get her going to more outside of the house once her year has passed. Shes doing great though-we are so happy with her progress! We'll keep her updates coming as her week of checkups draws nearer. Keep our Bellaboo in your prayers-we appreciate it more than we could ever say! God Bless!
Saturday, June 5, 2004 11:28 PM CDT Day + 316
I suppose that their should be an update to Bella's site since it has been almost two weeks. We got some great news on Friday went we went to get Bella's labs done. We had not had them done for over a week so we were a bit apprehensive as to what her counts would be. Would they be lower than her last count of 127? We were hoping that they would not have bad news in any form. Much to our enjoyment there was no bad news to be found anywhere in Bella's labs!
Her platlets had jumped all the way to 202 all by themselves in a week! It seems like yesterday that we were sitting in Minneappolis with a platlet count of only 7! You can not imagine how excited we were. Her hemoglobin was also in the 10.5 range which is great considering that in January we had extremely low levels as well! It would appear that our angel is starting to get her counts back to normal and on the right track for a great one year appointment in July. Karen and I started summer classes last week and Bella has been spending time with Great Grandma while we toil away all day. It is odd to be away from her from around seven in the morning until around four in the afternoon, but it seems that Bella is adjusting better than her Mommy and Daddy. She gets to see Bucko four days a week. Bucko is Great Grandma's tiny dog that Bella is in love with. It comes out more of "Bupo" when she says it though, which is always good for a laugh! The girl is just hilarious lately. Her vocabulary is growing with each day it seems, but I still think that she speaks some secret baby language most of the time. She looks at people so seriously and just starts babbling in infant jargon! We are hopefully planning a trip to the zoo soon. The girl gets so excited about a little puppy-imagine what she will do with a whole zoo full of giraffes and zebras and tanks full of sharks! I should problaby wrap this journal up for now! Thank you all for reading! God Bless!
Monday, May 24, 2004 1:01 AM CDT Day + 304
We have been enjoying the momentum from Bella's last labs! I am hoping that they will have continued to grow and that we will get a nice high platlet number tomorrow as well. Bella has been her silly self lately. We took her to Super Wal Mart the other night so that she could keep from going crazy. It was raining all day and the girl just wanted to get out and see the world. Bella always likes to go and check out the fish section. We took her to see them all and she became obsessed with the tank of goldfish. I do not know if Bella already has her daddy wrapped around her finger or whether I just feel that she is more than entitled to being spoiled, but we ended up with a big goldfish and a bowl and some rocks to match. Bella loves it!
She can not understand why she can't take it out and play with it though. She is constantly trying to stick her hand in the water to catch it. I will say "Bella no" and she will just look down at her wet hand and laugh at me!We asked her what the fish's name was and her reply was "beebob". We are not sure if that is an actual name or not, but it could fly as the name of a goldfish. Beebob it is!Bella is also finding out how much fun it is to run from her big brother. She laughs at him most of the time anyway, but she figured out that he will give chase if she giggles and heads the other direction. The other day Brady was telling us how hard it is to be a big brother. "You have to get diapers and play with them and read books". They both have so much personality and it is a joy to watch them laugh at each other. Everyone say a little prayer for Boo's platlets tomorrow!We will let you all know how it turns out
Thursday, May 20, 2004 1:14 PM CDT Day +301
Bella has been doing great since we returned from Minnesota. She is so happy to be back! We have kept her lab appt. twice a week and she dropped her platelets a bit last Thursday to 135, but today she had gotten HERSELF back up to 159! Her hemoglobin has been awesome too, staying stable, today's level was at 9.7! Hooray for Bella-boo!
Bella has a top tooth that has popped thru and makes her even cuter! She is still growing and developing so fast and everyday does something that makes us stop and go 'wow!'
Everett and I are planning to take some summer classes at the community college in June. And Bella will spend her days at my grandmas. It will be the first time she will go to a 'babysitter' regularly. She still isn't ready for daycare, as her immune system is compromised, but she will do well with my gma I think and perhaps it will make it easier for Bella once she does have to go to daycare. It will be weird for me to be away from her every day but it will also do us both good. She needs the independence as much as we do!
We have been letting Bella play outside whenever its nice out since she spent all last summer cooped up indoors. She loooves to be outside and tries to escape out the door whenever she has the chance. She is getting so self sufficient. This morning while I was getting ready to go get labs done I heard her tiny voice singing in her room, so I went to get a peek at her cuteness and she was sitting playing by herself singing her songs and carrying on. Its so nice now that she doesn't have to be entertained all the time. It can get a bit frusterating too at times. Today after labs we went to Chinese, as we do most Thursdays :) and Bella was VERY upset with us whenever we tried to help her eat her noodles. She wanted to do it all by herself. She'll need us less and less I fear. Bittersweet. Thank you all for checking on her and we'll keep you updated. God Bless!
Wednesday, May 12, 2004 11:28 AM CDT Day 293
I have GREEEAT news! We are packing up to head out this afternoon (weather permitting). Bella's platelets have skyrocketed up to 189,000 and have held for the past three days. She hasnt needed any transfusions since Saturday and she seems to be in much better spirits. I don't have much time for a lengthy entry right now, but we will let everyone know how shes doing once we're back. I know she will be thrilled to see her own room again! I can't wait!! Pray for a safe trip and for Bella to hold on to all her cells this time! We dont want to make another trip up here til July for her year checkup! God Bless!
Friday, May 7, 2004 10:42 PM CDT Day +238
What a week we had with our Bella Boo! She finally got out of the hospital yesterday afternoon after a three day stay. She received IVIG on Wednesday night and also on Thursday afternoon so we are hoping that her platlets can hang around for a bit longer. It was a long and frustrating three days for our daughter. She is used to going wherever she pleases, but due to being plugged into to a machine that was pumping in platlets,antibiotics,etc. she had to spend a lot of time in the crib or sitting on the playmat on the floor. All she wanted to do was get down and run around as usual. Obviously, she is too young to understand why she has to stay close to the machine for fear of pulling the lines out. We did, however, take many laps around the nurses station. Sometimes she walked, but mostly she rode in this big plastic jeep that we were able to push her in. We did have to take her shoes off as she was always putting on the brakes! LOL! We were going in circles with Boo leading the way and one of us pulling the IV pole along for the ride. It was about the only time that she was not complaining. Our little angel developed a bit of a "diva complex" this week. She was so tired of sitting in that crib and having to stay in that room. She learned how to really scream this week too, which was nice. Can you sense the sarcasm??? She did a fine job of letting her neighbors on 4A know that she was there! She gained and lost some meds this week. She is off of Acyclovir and on a couple new meds. They gave her lasix which lowered her potassium, so they are supplementing her with that. She also has a new blood pressure med. The most frustrating part of the week was the lack of smiling on Bella's part. It took her until Thursday to smile at her mother. You have to know that this broke Karen's heart. It was just Bella being frustrated, but still hurts the feelings! On a funnier note-Bella pushed one of her nurses away from her when he was trying to change her line. She pushed his hand and said "away" "away"! We both laughed, but Boo surely was not! To sum it all up-Bella has received three or four platlet transfusions as well as two shots of IVIG. They feel that this whole thing is caused by a virus. Most likely the cold that she she had a week or so back. That cold was working against the IVIG that she had gotten in Sioux City as well. We feel that we are on the upswing of this though! Bella had a great day today though as we tried to make up for her three day stay in the hospital. We took her to Perkins for breakfast and she got to be a big girl and sit in a booster sit instead of a high chair. She ate a ton! She had bacon and eggs of her own as well as part of Karen's melt and my chicken! We must not forget the pop! We took her to a small local mall and let her roam around too as she is loving the freedom of walking where she wants to again. We follow closely behind though as we are afraid she will crash and lose thos precious platlets! We will try and keep you all posted as to what happens this weekend! Thanks for checking on the Diva Miss Isabella!God bless!
Monday, May 3, 2004 11:58 PM CDT Day +234
Bella had her labs done again this morning. We went early cuz she woke with a fever. She was at 102F, and it made me nervous. I called Fairview first thing and talked to Dr. Tony Peters. She got ahold of Dr. Amir and we arrived at St. Lukes around 8:30am. They drew labs and took some blood cultures from her line. Everything came back good...except her platelets, which were at 7,000! Her condition was considered critical and they got her some platelets STAT. She then got an infusion of two different antibiotics thru her line before they shipped us off to Minneapolis. So not only did the poor girl have to sit in the hospital all day, but she had to be in the car all night. She is now settling into her hospital room at Fairview. Her temp is still over 102F and they are going to redo the blood cultures here. She doesnt act sick, aside from her crabbiness from just being annoyed at her sucky day! Hopefully this trip will give insight to what is going on in Bella's little body. It seems like we are battling our own one step forward, two step back...and I've decided that next time I'm taking a running start! Bella is back on 4A, which brought both good and bad feelings to Everett and I. Its such a mixed emotion to return to that floor. We know she will get the best care there though. She is in room 411 and the phone number is 612-273-0228. We hope she wont have a long hospital stay though, so if you need to get ahold of us we are at RMDH room number 222 and phone number is 612-379-9464. Keep Bella in your prayers and as always God Bless!
Friday, April 30, 2004 10:49 AM CDT Day +231
Oh what a whirlwind this past week has been! Isabella's platelets are on the fritz. She was at 82,000 last Thursday, as I think I said in the last journal entry, and then when we went to get her labs done again this Monday, they were all the way down to 16,000! So they gave her a very concentrated infusion of platelets from only one donor, to decrease any risks of reaction. Then we went back again yesterday for her regular labs and she was back down to 16! They pumped her full again and she was up to 95,000 after she got her infusion yesterday. Pray to God that she can hold onto these. There is talk of sending us back to Minneapolis and/or starting more IVIG. It'd be really great if neither were needed!
On the positive side, Bella's physical therapist feels that Bella is age appropriate with her development, and she thinks that next month will be her last with us. I'm not sure how Fairview will view this, but it makes Everett and I very proud!
Well, we get Bella's levels drawn again on Monday, so I will let everyone know what is found out after. Pray for the best!! God Bless you all!
Friday, April 23, 2004 9:43 AM CDT Day +274
I really must change the pictures soon! We got some very cute ones over Easter! Bella's hair is getting wilder by the day, and so is she! She cracks us up with her crazy antics everyday. The other day we had a bad thunderstorm, and I was driving Bella to Sioux City and got caught in it. It was pure greenish fog, and hailing, and I couldn't see a thing! I was getting all nervous and Bella lightened my mood! She was sitting in her car seat just staring out her window so interested in the hail. Then out of nowhere shed just let out this insanely cute giggle. She did that about five times and I was laughing my ass off! Who knew hail was that amusing!
Bella's counts have been pretty good since her IVIG infusions. She had to have it two days in a row over Easter weekend. Her platelets were so low the first day that it really didnt have much to grab onto so we stayed for platelets that day too! It was a long two days. I realized too, that sitting on your ass all day at a hospital takes more out of you then anything in the world! We were all cranky and exhausted after! Her platelets yesterday were at 82,000 and her hemoglobin has been holding at around 8.9 for a couple weeks now. She is being tapered off of her Orapred (steroid) and we are praying that her hemoglobin won't drop again once she is off!
Her therapies have been going really well. Everett and I are very proud of how much progress Bella has continued to make. She is saying sooo much lately, and her personality is one of a kind! Who needs cable when you have constant live entertainment?! She tries to say her ABC's- she sing-songs "A-B-B-B-B..." its so funny!
The Children's Miracle Network wants to include Bella in their annual telecast that KTIV puts on. They want to interview Everett and I about her and what St. Lukes has done for her. They have taken some pictures already, and the first thing that EVERYONE notices and comments about (even strangers in the store) is her hair!
Well, I hope everyone has been GREAT! Although we still have some setbacks to overcome, Bella is a joy and no one could tell what she has been thru in her short life. She doesn't complain about the trips to the hospital twice a week, or through therapy. This is what life is to her, and she makes the best of it....for everyone around her! Keep her in your prayers and thanks for checking in on us. God Bless!
Wednesday, April 7, 2004 11:50 PM CDT Day 258
It seems that there just are not enough "normal" days. The past two years have been full of such craziness for Karen and I. The week started with Bella getting labs done at our local hospital. We would find out later that the lab would mess them up and they would need to be rechecked on Tuesday. I had class and could not go with Karen to get labs checked, but I did meet them for lunch at Wendy's! Seeing both of their smiles waiting for me brightened my day! Monday took a bit of a turn for for the worse-for daddy anyway. I was in an automobile accident sometime after my last class on Monday. I vaguely remember most of what I did on Monday as far as school goes. I do not remember the accident or even attending my last class. I was knocked out during the crash and my short term memory was pretty cleaned out. I do,however,remember the site of Bella and Karen's smiling faces at lunch! It is like some after school special-the details of the crash,memory loss,waking up in the hospital. Enough about me and my craziness though. We are scheduled to take Bella to the hospital tomorrow for more labs. They want to start IVIG some time in the near future. We are still unlcear as to all of the details and what is involved. It will lower her immune system and takes a few hours to infuse. We finally got Boo's hemoglobin up and now her platlets need a little work! I guess that we are just hesitant to do anything to her that would make her immune system even worse. She already has to wear her mask most of the time-although recently we have been letting her slide so that she can enjoy the outside a bit. She has a fondness for swinging and milkshakes from Bob's Drive In (a local favorite). The best part of all this labwork is that Bella got a new toy out of the deal. The lab techs felt bad for messing up Bella's labs and bought Boo a stuffed purple monkey. It makes this "annoying monkey sound" when you squeeze the middle of it. Bella loves it though and it makes her giggle and smile. I will take that! We will keep you all posted as to lab results tomorrow and possible IVIG infusion. Thanks for reading!God Bless!
Wednesday, March 31, 2004 8:51 AM CST Updated from earlier today:
Hey Everyone- I dont have time to update this thouroughly right now. We are in a rush to get to clinic on time. But, I just wanted to let everyone know our phone number up here so we can be contacted for our stay. We are in room #136 and the phone number to our room is 612-379-2372. Feel free to leave a msg if we aren't back yet. I dont know how long we'll be over at PWB. Take care and we'll update this later tonight and let you know what we find out!
We went to clinic this morning and found out that Bella's platelets and hemoglobin look fine. They took a bunch of extra labs that will need some time to 'cook' so they are letting us go already tomorrow after she gets her labs drawn. We took Bella out and about today to the Roseville Mall. She had a long day and fell asleep in her stroller. Everyone commented on her curly head of hair. It was hard to explain to one clerk who asked me if she got it from Daddy. I was like..'um no' She wasn't all that interested in hearing about her transplant though. Why ask then? *shrug* This morning in clinic Bella was on the run. She kept breaking out of our room and going down the hall to say 'HIIIIIIIII!' to everyone. She loves the attention she gets, everyone exclaiming how beautiful she is. She is definately not a shy one. At one point, Kelly, one of the aides was in our room chatting while we waited on lab results and Bella reached up and grabbed her hand and led her out to the hall. I guess she knows how to work her charm to get what she wants already! We are thrilled that we don't have to stay long and that this isn't as serious as it could have been. We are a little annoyed that these labs couldn't have been drawn back home and just sent up, but it's always a good feeling to know that its being done right. Pray for a safe return home!
Monday, March 29, 2004 8:10 PM CST Day +249
Today we took Bella to get her levels drawn again. Her hemoglobin was over 9, she brought it up a bit from last week on her own. Last week, on Thursday, she had to get an infusion of platelets becuz she had dipped down to 40,000. Today she was still at 62,000, but Fairview wants more testing done. Our doctor here, at home, isn't comfortable with performing them in Sioux City, so we were contacted today by Teresa, the nurse coordinator for Dr. Peters in Mnpls. She asked if we could make it to clinic tomorrow. So, we are frantically trying to make arrangements to be able to make it there tomorrow evening so we can take Bella in to clinic Wednesday morning. They are not sure what is causing this, whether or not its related to her hemolytic anemia, or if its something else entirely. Hopefully we can get it sorted out without a lot of fuss. Its very frusterating to see her make such progress and then have to return to more complications. I now, unfortunately, really relate to one step forward, two steps back. I try not to worry myself, and keep my faith in Isabella's strength. I know she is in God's hands. She has proven time and again that she has the ability to overcome the odds. This is one more setback she will right in her own time. We just have to be patient and give her the help she needs. We will let you all know how everything goes while we are up there. Maybe we can get ahold of our friends the Mclungs and see how Taylor is doing! Find something to be glad about, right? Keep Bella in all of your prayers. God Bless!
Monday, March 22, 2004 11:58 PM CST Day +242
I know that you are all shocked by now that we have posted two journals in three days!We had a Daddy and Bella field trip to St. Luke's to get transfused on Saturday.It was such a long day and Bella got tired quickly. If you know our Bella, you know that tiredness equals crabbiness. She managed to throw both a glass of pop and a popcicle on the floor in her anger. And she has now started to pull her own hair when she gets upset. She must have heard about those terrible twos and is practicing proper behavior for when August comes around. Her transfusion went well and we were out of there after a "short" six hours. We are supposed to get her labs done again and I am sure that her tank will be quite full since she was at 8.0 when they transfused her. In other news-Bella has started walking all over the place as you all know. She has also added more of a "running" style. She gets so excited to get to a certain place (couch,mommy and daddy,etc) that she just takes off. It is a very fast paced walk as she can not get her knees high enough to run! It is awesome! She just smiles and takes off flying across the room! She is realizing that she is super cute too. She will turn her head slightly and smile. She is such a little flirt. Or maybe she is just in love with her Daddy! We will keep you all posted on her happenings...........take care and God bless!
Friday, March 19, 2004 6:31 PM CST Day +239
Isabella had labs again this past Tuesday, and her level was down to 8.0. She has dipped down to eight before, and they left her alone, but this time, they have decided they want her trasfused. The problem with that is her blood still has those crazy antibodies that are so hard to match, so they sent her samples up to Minneapolis, to Fairview, and they will tell the blood bank just exactly what they want done. Bella will go in tomorrow morning for her transfusion. I am glad that this time we didn't have to wait in the hospital for the days wait until a suitable match was found.
Bella went to visit her cousin, Karli on Wednesday. She lives out on a farm, so I was very hesitant to take her, but I know how much Bella loves to get out, and she loves the baby as well! So, I masked her and took her out, and was she ever in heaven! She squealed with delight when she saw the kitties and puppies. She called them 'titty and pee pee!' Isn't that the funniest?! We got quite a kick out of it! I'm glad I decided to bring her out. She had a good time.
Bella's walking has been improving everyday. She is cruising around now barely ever stopping to hold onto something. She will pick up a toy and carry it to another room unaided, and its so awesome! I have to keep the bathroom door shut at all times now though, otherwise she has discovered its really fun to drop things in the toilet! I was in the bathroom the other day drying my hair, and in strolled Bella, with a crayon dangling from her mouth. I said 'Bella, ocky! Get that out of your mouth.' And she looked at me defiantly, jerked it out and threw it right in the toilet! I couldn't hide my laughter. She is such a snot sometimes!! But I love it!
Well, hopefully her transfusion will run smoothly and we won't need anymore after this! Pray that she will hold her hemoglobin once and for all! God Bless!
Wednesday, March 10, 2004 9:33 PM CST Day +230
Bella had her labs done yesterday, and we never heard anything back, and no news is always good news! She has therapies tomorrow afternoon, and we know she'll do wonderfully. We feel she is making such strides! She is talking so much more now, and getting around on her own and getting into everything! I don't even mind cleaning up the same messes every 15 minutes! She has been such a sweet girl to Trista's baby. Today we let her hold Karli and Bella stroked her head and gave her lots of kisses exclaiming 'Mwah!' each time. We had to wipe the slobber off of Karli's bald head. It was so cute! She loves her little cousin! At one point I was holding Karli and Bella was sitting beside me and Karli started crying and Bella looked up at me with a concerned look on her face and she says 'Mama?...Baba!' She knew that the baby was hungry and wanted her mommy. How observant is she?! I posted new pictures finally and they are very cute...even if I am biased! God Bless you all, and keep checking back for the latest news in Bella's life!
Wednesday, March 10, 2004 12:02 AM CST WE PROMISE TO DO A JOURNAL LATER BUT PLEASE CHECK OUT BELLA'S NEW PICTURES!
Tuesday, March 2, 2004 2:08 PM CST Day + 222
We took Bella to get her labs done today. We were a bit apprehensive at first as her hemoglobin a week ago was at 8.0. Shortly after leaving the hospital we got great news from the infusion center! Bella's hemoglobin had climbed all the way to 9.7 all on it's own! She is such a rock star! We were worried that she may dip down into the 7's but she showed us all what she can do! She also had therapy today. She was really attentive and enjoyed talking Nancy's ear off. Nancy is Bella's favorite therapist and always has the coolest toys for Bella to get into. Bella has been talking so much lately. Riding in the car she jabbers and jabbers to herself. No doubt telling herself how cute she is and how fun it is to be naughty and stay up all night! Sometimes it seems like she is speaking Chinese from the sounds that she makes. She has this serious look on her face and her voice gets so loud. It always makes us laugh though and we love that she is communicating! She continues to be an eating machine-or rather a snacking machine. She eats frequently but seldom eats large portions. She is always pointing towards the fridge and demanding "nee nee's"! It can get a bit frustrating but we can not resist when she says "pease"! Speaking of eating and Chinese-we took Bella to the chinese place after her labs today. Mommy was treating for lunch! Bella ate tons of Lo Mein and parts of our lunch as well. The next part is hilarious! Bella started sneezing and Daddy noticed that she needed her nose wiped. She sneezed a couple more times and we realized that she had sneezed a noodle out of her nose! It was dangling out of her nostril! It was so funny!
We laughed so hard and Bella just looked at us like "what?"
Can you imagine snorting a noodle from your throat out of your nose? Bella took it in stride as she does everything else. We are scheduled for more therapies next week and will let you all know how it goes! Thanks and God bless!
Tuesday, March 2, 2004 2:08 PM CST Day + 222
We took Bella to get her labs done today. We were a bit apprehensive at first as her hemoglobin a week ago was at 8.0. Shortly after leaving the hospital we got great news from the infusion center! Bella's hemoglobin had climbed all the way to 9.7 all on it's own! She is such a rock star! We were worried that she may dip down into the 7's but she showed us all what she can do! She also had therapy today. She was really attentive and enjoyed talking Nancy's ear off. Nancy is Bella's favorite therapist and always has the coolest toys for Bella to get into. Bella has been talking so much lately. Riding in the car she jabbers and jabbers to herself. No doubt telling herself how cute she is and how fun it is to be naughty and stay up all night! Sometimes it seems like she is speaking Chinese from the sounds that she makes. She has this serious look on her face and her voice gets so loud. It always makes us laugh though and we love that she is communicating! She continues to be an eating machine-or rather a snacking machine. She eats frequently but seldom eats large portions. She is always pointing towards the fridge and demanding "nee nee's"! It can get a bit frustrating but we can not resist when she says "pease"! Speaking of eating and Chinese-we took Bella to the chinese place after her labs today. Mommy was treating for lunch! Bella ate tons of Lo Mein and parts of our lunch as well. The next part is hilarious! Bella started sneezing and Daddy noticed that she needed her nose wiped. She sneezed a couple more times and we realized that she had sneezed a noodle out of her nose! It was dangling out of her nostril! It was so funny!
We laughed so hard and Bella just looked at us like "what?"
Can you imagine snorting a noodle from your throat out of your nose? Bella took it in stride as she does everything else. We are scheduled for more therapies next week and will let you all know how it goes! Thanks and God bless!
Tuesday, February 24, 2004 8:15 PM CST Day +214
Isabella had labs done again today and her hemoglobin was at 8.0. A significant drop from last week's 9.4, but still good enough to steer clear from a transfusion. She will need to get rechecked next week though.
My little sister, Trista, had her baby on the 16th! She had a beautiful baby girl, and named her Karli. I have to sadly admit that I looked at her for any resemblence to a child with Hurler syndrome, even though I know that it wouldn't show up for months. Is that bad of me? I'm sure she is fine, but the seed of paranoia has already been planted in my head....
Bella has been getting better these past couple of days. She has regained her appetite for the most part, and demands food all hours of the day. She is getting more and more daring when it comes to walking too. Today I was brushing my teeth in the bathroom, and thought Bella was content playing on the floor in the living room, but when I came out to check on her, she wasn't there. I found her in the kitchen, having opened every drawer and cupboard in her reach! I will have to child-proof the house, no doubt! It's awesome though, and I don't mind the challenge!
Thanks for checking up on Bella and be sure to pray for her and all of the kids with Hurler! God Bless!
Friday, February 20, 2004 9:32 PM CST Day +210
Hey everyone! Bella had her blood levels drawn Tuesday and her hemoglobin was still stable at 9.4! I was really worried going in becuz she had started feeling yucky the night before. Then, she started puking and refusing to eat...which since starting back up on steroids, her appetite was ravenous- so her not wanting anything to eat...not even her bottle, was startling to me. We called up to Fariview and the fellow thought it was probably due to her RSV, that maybe she was coughing up phlegm and it was gagging her and making her puke. I didn't understand though, if that was the case why she was refusing to eat entirely...but she started eating again and has been regaining her appetite. Maybe it was just a fluke thing for those two days, but it sure scared the daylights out of me. It was so bad one night that as soon as I cleaned her up from one puke mess, she had made another. Luckily for me, it was only water and pedialyte. I got Bella's neuropsych evaluation in the mail today, and they suggested she get her therapies 3x's a week whereas she was only having them twice a month before, so I need to get on the school system about what they have to offer her. Unfortunately, she is still immunosurpressed, so itd have to be in our house, and further still, she lacks the peer interaction, I know she craves. She loves to play with Brady, but I can't wait til she is able to play with other kids her own age. All in due time. Well, I will try to keep this updated, but if you don't hear anything, assume all is well. We are very happy to have returned home so soon! We revisit Minneapolis at her 9 month anniversary to remove her Central Line and get her hernia fixed. Pray that the anemia clears up and allows it to take place this time!! God Bless!
Monday, February 9, 2004 12:32 AM CST Day +199
Bella's hemoglobin is at 9.5! The doc today said that generally when you get a transfusion, it won't bring it up that much at a time, so he's thinking Bella's marrow kicked into high gear and shot out its own new cells too. Her retic count was taken today too, which is the rate at which her marrow is making new RBC's and it was at 5.5. The norm is .5-2 I believe, and so hers is high, but they expected, and want that right now, becuz her marrow is trying to make up for all it lost this past month. We also found out about her biopsy, and all is well with her engraftment! THANK GOD! They are actually leaning toward her RSV as being the culprit for all the confusion in her body right now. They tell me she sounds good though, she's not too wheezy, and they are confident she will shake it on her own. It just might take a lot longer than a normal cold to you or I would. Anyway- we have to go back in tomorrow morning to get her hemoglobin rechecked, and if it is still up there and stable, Dr. Peters is going to give us the okay to leave tomorrow! YAY! What's funny is Everett just left last night, and now he has to come back to pick us up. Pray that the weather holds out for us to be able to leave, and please pray that Bella will be fine back home. It's scary to leave after being here... especially when things are a little gray still. We will come back up at her 9 month post-transplant mark, and she will have her umbilical hernia fixed, and hopefully her central line removed. I should have asked about steroids today...I wonder how much longer she will be on them? Her CSA taper began last week, and she will be off completely by late March, I think. A few months down the road..she will look a lot different again. Just when we got used to the pudgy, hairy monster, eh? I'm so HAPPY!!! God Bless!
Sunday, February 8, 2004 10:59 PM CST Day +198
Hey everyone! I wish I had wonderful news to share....but I suck! Bella's cold turned out to be RSV. (BLECK!) Good news on that topic, though, is that the doctors think her immune system is strong enough to fight it out on its very own! YAY Bella! Pray for a speedy recovery, we don't want it progressing into anything worse!
Today Bella's hemoglobin was down to 6.9, so they wanted to transfuse her. Luckily, since she hasn't needed one in over a week, but they had her typed and crossed for awhile now, it only took a little over an hour to get the blood to us. After they hooked her up, having been pre-medicated with Benadryl, and Hydrocortizone, Bella conked out on me, and Everett ran over to RMDH to find us some grub.
I was stuck with my sweaty daughter on my half-sleeping arm, watching Beethoven's Second...and I was just staring at Bella. I couldn't take my eyes off of her. And then I was crying. I probably looked like a dope. It's just that I was so overwhelmed with such a feeling of gratefulness, the stark realization of what a gift I had, right there in my arms. I knew that if anyone walked in, I'd have to explain to them why for no reason I was crying...but I didn't care. Bella was so peaceful, sprawled out...completely trusting of me to hold her and keep her safe. She looked beautiful, with her dark curly mass of hair,and her flushed, chubby cheeks...and God, those lashes. I kept wondering 'What did I do to deserve such a gorgeous baby?' I thank God everyday for her second chance at life, but it's moments like those that you really feel it all the way down in the deepest parts of your soul. I ached to squeeze her up in a big hug and plant a hundred kisses on her cheeks, but I didn't want to wake her....she's crabby during transfusions!! So I just whispered to her through my tears...and I know that she heard me.
Saturday, February 7, 2004 9:35 PM CST Day +197
Bella got her hemoglobin up to 7.6 by clinic time this morning. We will have another set of labs drawn tomorrow morning, but only for count purposes; we won't find anything out about her biopsy or anything until at least Monday, when we will visit with Dr. Peters. My guess would be that he will see her as being 'stable' as far as her hemoglobin levels are concerned, and as long as they can keep the blood bank on task with keeping the search going for her,(back home) I'd say he might let us go home-home within the week. But, don't quote me on it. One can only hope! Bella's disposition was much better today, maybe she's adjusting to the steroids or something. She is still eating A LOT though!
She got to meet Ronald McDonald today, and got an autographed picture of him. Everett and I were really bummed we didn't bring our camera up...but oh well..next time! She didn't seem a bit amused by RMD at all actually, she was more interested in what the other kids were doing than what he had to say to her. She LOVES kids! I can't wait til she can get rid of that mask and go run and play with them all! Ronald tried to guess Bella's age and thought she was THREE! I know she's tall, but WOW! Not that tall! HAHA! Actually, when we were in the hospital this past week, she measured 33 inches! Not too shabby, eh?
Anywho-not much else to report from Minni. Everett is gonna finally get outta here and return to school. He'll leave tomorrow. The weather looks like it might hold up for him. Pray for a safe journey home for him, and for Bella's biopsy results to come in for Monday's Dr. visit with WONDERFUL news! Love you all! God Bless!
Friday, February 6, 2004 11:13 PM CST Day + 196
We did not get a chance to do a journal entry yesterday and I know that it is not nice to leave you all hanging. We went to clinic yesterday and today and Bella's hemoglobin was at 7.6 yesterday and 7.2 today. High enough to not have to sit in the hospital, but not quite where they would like it to be. We still do not know what course of action they are going to take. I guess we will learn more on Monday when we meet with Dr. Peters. It will depend greatly on how high her level stays over the weekend too. It is still a bit frustrating for us to still be up here. We realize the importance of being here of course, but it seems that we do a whole lot of waiting around and "waiting and seeing". It is not so bad to go to clinic and have labs drawn every day, but sitting in the hospital for a couple of days at a time without a transfusion,etc. can wear on you a bit. We did have a quick trip to clinic today though-not much waiting around. It seems that waiting for the ride over there takes longer than actually being in clinic! We took Boo to therapies today as well and she did well. There are times when she just looks at the therapists like "I hope you do not expect me to do anything for you". Today she was fairly cooperative and mangaged to show off a few of her new skills. We decided that she is much more of a destructive child rather than a constructive one. At least when it comes to playing with blocks,etc. It has to be more fun to knock them all over right? She is, however, very good at coloring and scribbling. She definately has the "artsy" gene! She must have gotten that one from her mother! She has therapies again on Tuesday.
Lately, since Bella has been on steroids, her appetite is on the rampage! She eats constantly and wants EVERYTHING in sight! As soon as she awakens, she demands 'pop, pop, pop'. We just finally started faking her out and telling her water was pop. Tonight we ordered in some Dominoes and we have a smaller room this time, since our stay is significantly shorter, and we have NO table to eat on. So, Bella and I were eating on the bed. The box of pizza was sitting on her other side, away from me, and she decided while I wasn't paying attention, she would help herself to the goodies off the top of the pizza. She has almost eaten all the toppings off of a slice before I realized her sneakiness! She will definately be plumping up any time now! Karen will love it!
We have labs all weekend long and a meeting with Dr.Peters on Monday. Hopefully Bella can keep her hemoglobin up until then! If she does there may be a chance that Boo can come home before too long! Karen and I are both sitting here typing this journal entry and I would bet that if you have read most of these journals you can tell which of us typed which part. That's how exciting Minnesota is at midnight I guess!
Wednesday, February 4, 2004 11:16 PM CST Day + 194
After another fun trip to the hospital we finally got to return to the RMDH today! It was a bit frustrating to me though because I feel like all they did was watch her Hemoglobin for two days. I understand that they can do it much easier in the hospital, but I feel like we have spent more than our fair share of time inpatient. I was on duty last night as Karen was still feeling sick. Bella felt the need to stay up and be crabby until around eleven thirty. I swear she through her binky out of the crib a good dozen times before she finally went to sleep. If you have seen Bella in action lately you know that everything ends up on the floor. They checked her hemoglobin around six in the morning and it came back at what they believed to be in the 7.0 range. After putting their brains together they decided that we could head across the street and come to clinic tomorrow to have it rechecked. We are continuing to enjoy the steroids that they prescribed Boo! That girl has been eating so much lately! Eat and crab and eat and crab and throw in some play time in between! They did change the type of prednisone that she is on though. She now has a much better tasting steroid that also comes in a lesser dosage. The girl takes so many meds-she needed to catch a break. We did have a fun moment of tossing Bella around on the bed today though. I taught her how to get suplexed! I know this sounds a bit odd, but it was totally safe. Even Karen laughed and she can be a bit overprotective once in a while. Don't tell her I said that! She also likes to be thrown up and caught and she enjoys flipping around on Mommy's legs. The girl can be so tough to entertain yet so easily pleased at times! We still have no clue as to how long it is going to take to get this under control although it is great that her hemoglobin is stabilizing by itself. It may go up or down tomorrow. We may get blood or a new med. We will keep you all posted after clinic tomorrow morning! Have a great night!
Tuesday, February 3, 2004 10:05 PM CST Day +193
Today was just more of the waiting game. This morning Bella's hemoglobin was at 7.3, so it had gone down a bit. They checked it again this afternoon and it was at 7.4. So, no drastic change in either direction, but if tomorrow morning brings the same, it's looking like we'll at least get discharged from 5-B. She is now on a nation-wide search for a match for blood. They want to find the least incompatible blood so her body won't kill it so quickly. Everyone donate blood if you are O!! :)
Bella has been getting a little cold the past couple days, and it would seem I caught it as well! YUCKY! I have to admit though, that if I have the same as she, she sure hides how crappy she's feeling! She has been through worse than some headcold though..so no wonder. I'm such a baby!
Isabella got to see therapies today. They came to visit her in her hospital room. She walked for them and showed off! Then later, after having told them she still would'nt crawl, and we thought she never would...we witnessed such a sight! Bella was down on the playmat, and there was food on the other side that she wanted, and I just stood there and watched to see how she'd manage to get it over to her. Low and behold! She got on all fours and slowly made her way over! I whisper/yelled 'EVERETT!' and we shared such a happy moment! We found it odd though, that we were crying happy tears over our 1 1/2 year old crawling! It's just one more step in the right direction. We have been trying to get her more comfortable on her belly cuz its easier to learn to transition from sitting to standing if you can crawl...which is why there is the natural progression for babies to crawl first. Well, since Bella skipped that step, she doesn't transition well even now. So we are thrilled that she is filling in that gap! We also heard from her speech therapist, who is very satisfied with her progress. And Bella even got to have Art Therapy for the first time tonight. It's something thats more new, but I was told is a great alternative to therapy where feelings have to be expressed in words. She got to play with playdoh and other fun stuff.
Then we got another awesome surprise! Adiyam and Laura from 4-A came to visit! They heard we were in and thought they'd drop by. We haven't seen them in such a long time-I think since we got discharged from transplant back in August! They were so happy to see Bella, and thought she was so cute! I think Bella remembered them too, cuz she kept teasing them and giggling at them. It was awesome!
Well-hopefully tomorrow will bring even better news, with us getting out of the hospital and having an idea of where we will go from here. Thanks for checking in, and as always...God Bless!
Monday, February 2, 2004 10:10 PM CST Day +192
Oh where does all the snow come from?!?! It hasn't stopped snowing since we got here!! Ok...so I'm exagerating...but barely! Everett finally got his car started up today, so hopefully, if the weather cooperates, he will return to school tomorrow. We took Bella to clinic today to see Dr. Peters, and unfortunately, her good hemoglobin dropped a bit. Down to 7.6..not too low tho! He decided that we should be admitted to 5B again, becuz they might want to start her on Retuxinam(?) Which is a chemo-type drug that will suppress her ability to make B-cells, which are one kind of white blood cells. These are the cells that are marking and killing her RBC. With this sort of treatment, they are hoping that when they allow the B-cells to return, the antibodies will have all died off and her body will be reinhabitated by GOODNESS! :) There, of course, like with EVERY drug, are downsides. One being that this will make her more immunosuppressed, the effects of ONE dose will pretty much wipe out her B-cells for 6 months. Plus, it's a synthetic drug, thus, each time she has it administered, she has to be at the hospital for the few hours the infusion takes, to be monitered for any sort of reaction.
Well, before deciding for SURE to start such a drastic treatment, they took one more blood sample for counts this afternoon, and her hemoglobin was at 7.7. So, taking this into consideration her team of docs will hold off on any of the drug, or any transfusions (of RBC) for tonight and see what tomorrow morning brings. If there is any drastic measure of change in either direction, this will dictate their next plan of action. Meaning, if she drops significantly, they will being treatment with Retuxinam. If she stays stable, or her body seems to be regaining hemoglobin on its own, we will probably try to stick to steroids as our main course of defense. We are praying for her body to kick it into high gear!!! Bella is sleeping over at the hospital, as are Everett and I. But, we will let you know as soon as possible tomorrow what we find out. Love you all, and thanks for checking in on Bella! God Bless!
Sunday, February 1, 2004 9:32 AM CST Day + 191
Bella and I just got back from clinic. She is taking a nap and Daddy is sitting here typing this journal entry and watching the snowfall. Bella's hemoglobin was 8.3 today which meant that she made it yet another day without a transfusion! Hooray for Bella Boo! It is such a pleasant surprise to not have to get transfusions, but we are not putting too much into it as hemoglobin can drop very quickly. I do want you all to be excited about Bella not having any transfusions since Wednesday though! Bella and I had a rough night. She was up at least a dozen times throughout. Diaper changes,a new bottle, or just to remind me that she was still there! I do believe that the steroids are kicking in as she is extra moody as of late. Even a diaper change is a struggle at times. The girl is definatelly learning to throw a fit. I do not blame her though-I do not like being here at all either. We did have a wonderful game of "bounce Bella" at seven this morning! She was very crabby and I just started chanting. "No crabbing-only bouncing" over and over and then I started bouncing her on the bed. In a few moments she was giggling away and signing that she wanted 'more'! It was a great moment. A bit early for bouncing maybe,but a great time was had between us. After bouncing she leaned in and gave me a hug which just melted me down to the floor. We were both tired and a bit cranky and not wanting to do meds and go to clinic. Yet with a tiny hug from tiny Boo all was right! Bella does have clinic tomorrow so we all have to do the High Hemoglobin dance and chant! If you need pointers Bella can show you........God Bless!
Friday, January 30, 2004 11:52 PM CST Day + 189
We went to clinic today not knowing what to expect. Karen and I were excited about yesterday's hemoglobin count yet we did not want to get our hopes up. We were,
however, pleseantly informed that Bella's hemoglobin was at 8.4! Anything above 8.0 is a good number to see. Bella had a decline of .4 but she did not have to get a transfusion today which is awesome! It did take a while to get lab results back though-long enough for Boo to eat a ton of cheese and crackers and soda pop! Her spirits were high throughout most of the visit to clinic up until the very end when it became apparent that a girl can only go so long without her beauty sleep! That girl took a two and a half hour nap and so did Mom and Dad! There is still a lot of uncertainty in the length of our stay and just what is going on inside our Bella's body. We want you all to find happiness in that her hemoglobin was as it should be the last couple of days and cross your fingers for a decent number tomorrow! We will keep you posted! God bless!
Thursday, January 29, 2004 10:14 PM CST Day +188
Bella got through her procedure today like a champ! She woke VERY crabby today before the alarm. And we all watched Blues Clues and tried to get her mind off of a tummy full of formula (which is what she really wanted). We made it to the hospital at about 5:45am and waited a bit for her chart and everything to be sent down. After we got her changed and her vitals were taken, she started to get very cranky. About an hour had elapsed by then, and we still had to hear from all of her 'team', so that would be another hour til she was ready for the operation. She decided to take a little nap though, which was a lot less stress on us, since she wasn't needing constant distraction from being so hungry. (Everett and I were starved too, since we didn't feel itd be right to eat in front of the poor thing!)
Last time Bella had to go under anestesia, there was much confusion about how to take her to the OR. We were told one of us could go back with her til she was out so that she wouldn't have that apprehension of leaving with strangers, but that fell through and we had to watch a very upset Bella (and mommy) down the hall. So, this time we made SURE to express our concerns with the anestesiologist (SP?) that we didn't want a repeat of that! So I got all garbed up in my marshmellow suit, blue slippers over my shoes, pretty blue bonnet and mask, and carried my hero to her next task at hand. She slept on my shoulder as they readied the room. I can say that I had to hold back my own nerves so that I didn't make her scared, but that room was so big and clean and WHITE and it freaked me out. I had to think VERY hard about not thinking of what went on when I wasn't there. I just had to let go, and let God. (and this was only a minor procedure!!) Anyway-when they had everything ready, I layed her down on the table and soothed her as she stared up at me so confused, as she was waking up with 5 masked faces staring down at her, I made sure to let her hear my voice, and I rubbed her head so she wouldn't feel scared. They gave her the drugs, and it seemed she was drifting off immediately (which was to be expected) but as soon as the doctor said 'Ok, thanks mom' she popped open those huge blue eyes and let us know that she wasn't giving in THAT easy! The Dr. was surprised and commented on my baby being quite the fighter! He gave her a bit more and said that 'this should work, it'd put YOU to sleep'. And out like a light she went. That was the end of my journey in the OR, but Bella got a succesful marrow biopsy taken, and we met her about 45 minutes later in recovery. When we got there she was PISSED! She didn't want me to touch her. I truelly felt like she was mad at me for leaving her in that room! They told me though, that it was just the anestesia wearing off, and she was disoriented and felt yucky. She's just never woke from the others like that....*shrug...blame it on the steroids!
When Dr. Peters came to tell us how it went, he also had the great news that her hemoglobin actually went UP from yesterday to 8.8 ON ITS OWN! We have no reason to why, but we'll definately take it! We go in tomorrow to clinic to have it checked again, and if need be, they should have some blood ready for her to be transfused. So, a day that started out to be a drag, had its blessings after all!
My friend, Krista, told me to play the 'Glad game' when I'm feeling like nothing is going my way. And today my glad was that Bella didn't need a transfusion! Thanks Krista Ash! I'm doing my best! We'll keep you updated on the happenings of the days to come. God Bless!
Wednesday, January 28, 2004 1:00 PM CST Day +187
Bella seems to be doing well today. They didn't get her first transfusion in her til yesterday afternoon, so the bump barely made a difference. It got her up to 6.9, so obviously she needed another one last night. That jolted her way up to 9! Unfortunately, she's come down a little bit since then and is hanging on a little over 8. They are checking it again at 2pm this afternoon, and if she is still at at least 8 she gets to come over to RMH to stay for the night. They also started her on methylprednisone (steroid) which is giving her wonderful mood swings. One minute shes all giggles the next she's throwing herself back in an awful tizzy fit! Shes a monster! She also got back on Zantac to protect her tummy from the steroids. She is cruising all over the place the past couple of days! She is willing to take risks that scare the bejeezus out of me! When she is 'tethered' to her IV pole and wants to be all over the room, she gets beyond pissed when I make her sit to play. I'm very happy that she is wanting to go on her own though. It amazes me everytime I see her walk independently!
Tomorrow morning they have scheduled a bone marrow aspiration for our little angel. She has never had this operation before, since they generally try to steer clear of them for kids with Hurler, but there is a chance that all this craziness is being caused by her engraftment slipping. The doctor said that she might have been fighting these antibodies for quite some time and we couldnt tell and now her body is worn out and gave up, so that is why it is killing off her cells now. He doesn't believe this to be the case, and we all pray to God it isn't, but the procedure will take a sample of marrow and also a tiny sliver of her actual bone and will be able to tell us if this is the case.
Please pray for Isabella, and keep her in your thoughts through her continuous fight! Thanks for checking up on us! God Bless!
--Our hospital room number is currently 612-273-0331, and at RMDH we are in rm #125 and the phone# is 612-379-9515--
Monday, January 26, 2004 11:24 PM CST Day 185
I'm not too thrilled about the entry I'm about to make. Today did not go as planned. We have been trying to be optimistic, but the reality of it is, that this sucks. Well, this morning it started with our schedule having been cancelled b/c of Bella's hospitalization back home. Then we got it all figured out and got on track with neuropsych. After that, we went to clinic and had her labs drawn and sat down to talk with Charlie Peters. Well, her labs came back yucky. Her hemoglobin was down to 6.7 already from late Friday night's transfusion. So, it was more serious than they had thought. She needed another transfusion and they didnt know how long it'd take to find a close enough match. So, she has been admitted to 5B...yea we didn't even get to be on 4A! *tear (kidding)
She has Hemolytic Anemia. She has aquired a nasty little antibody (either cold or warm, or both they are thinking) that is labeling her own cells as bad and her body is destroying them. It's not common, but not unheard of, and so at least they feel that they have a handle on things. They started the search for a match (blood) early this afternoon, and she is still waiting! They think they may have it though, and ready for her by 2am tonight. The scary thing is if we go home and she were to need blood on an emergency standpoint....it took 13 hours last time and just as long up here- where they have a bigger supply, you know?! Its a very frightening thought. So, they requested she stay up here until it has worked its way through its course. I wish I had a set time for you all...well for me mostly :P but they can't say. Every person is different. It could be a few weeks, or several months. Its very frusterating....and all I can say is that it could always be worse. I am thankful for what she has not had to deal with, and happy that this is treatable and we caught it before it got out of hand. Please pray for Bella- that her body will accept its cells and live harmoniously with them. Keep checking back....I'll keep you all updated on her progress. Much love! God Bless!
Sunday, January 25, 2004 7:00 PM CST Day +184
WOW! It's been far too long since I updated this! I'm really sorry! We are back at RMDH for Bella's 6 month check-up, so I can actually sit at a working computer and type this out for you all! Our computer has been on the brink the past month, but it is supposedly fixed now and waiting so hopefully we will be able to keep our updates more frequent again. I guess I have to start back at Christmas time since it has been so long!
Christmas went well. We had Bella home, and that was the BEST gift we could have asked for. She was very timid with opening her presents, but she liked everything she got. LOTS of Blues Clues stuff topped her list, and she got some cute clothes as well.
Everett and I started school a couple of weeks ago, and it seems to be going well. We are both really happy to have the opportunity to go back to school now. Bella cant go to daycare tho, so our schedules are opposite days so one of us is always with her.
Bella has been progressing in her therapies and began walking a little over a week ago! She also cut two teeth on the bottom FINALLY! We were so grateful cuz we all know how painful those first ones are to get in! During the time she had just got her teeth in, Bella was fussy, like most kids would be, but there was an underlying cause that we were unaware of. At her last 2 week lab draw, it was found that her hemoglobin was down to 3.7!!! The poor girl was oxygen starved and beyond tired! I felt soooo badly for not knowing. I have been reassured time and again, I could not have known, but still youd think a mom would have some special intuition! Anyway- she got admitted to the hospital last Thursday afternoon and had to get a RBC transfusion ASAP! But, it took them 13 hours to find her a good enough match! EEEK! Her blood had an antibody, which they thought was from one of her last tranfusions, and it was killing off her own blood supply! She had to stay overnight thursday and friday and had 4 transfusions by Saturday morning. They got her up to 8.3 and stable. Now tomorrow we take her to clinic and they will check to see if she has been able to maintain her counts! Cross your fingers! Katie told us that this happens in a lot of kids when their blood type starts to change. So, hopefully thats the case and we dont have to deal with this for a long time. Its soooo scary! Needless to say, she wont be able to have her central line removed this Tuesday, as had been planned, since they will need to keep tabs on her hemoglobin til they are sure its stable. Thats ok by us though, whats a few dressing changes and line care compared to her having to be stuck everytime they need to draw blood?
I hope everyones holidays were wonderful, and I will definately try to stay on top of this site! God Bless!
Friday, December 19, 2003 9:54 PM CST Day +147
Isabella keeps getting cuter by the hour, I swear! She is cutting teeth FINALLY! I think her bottom two will pop through any day now, and she's working on the top ones as well. 'All she wants for Christmas is her two front teeth!'
We are really excited about the holidays this year. I couldn't ask for a better gift than to have my baby girl home and healthy! Bella has made lots of trips racing her push-push towards the Christmas tree and crashing into the presents underneath. I can't wait for her to tear into them and play with all her new toys! I love Christmas!
We got Isabella's schedule for her 6-month checkup. I'm really nervous about her getting her line out, but happy at the same time. Do you think she'll wonder where it went once its gone? We'll let you know more about it when its closer. The date is set for Jan. 26-27, 2004! Can you believe its going to be 2004 already?
Everett and I are getting ready to go back to school. We have our schedules opposite so that one of us will always be with Isabella. With as much time as we have had to spend together in the past year, I think redefining our independence will do us good. I don't think I even know how to socialize anymore! What will I talk about to people who don't know what Hurler Syndrome is? Just kidding....kind of :)
Anyway-as you can tell from my very lacking entry this time, there is not much new to report. And thats good- Isabella continues to do well- she's trying hard to get around on her own and is constantly gaining courage. And she's getting so smart! My sister, Trista, is very much pregnant, and she taught Bella to pat her big belly and say 'Baby'. So now she likes to do it to everyone! It's very cute, but could turn out to embarrass me in the end if she does it to the wrong person!
We miss all our friends from RMH, and are thinking about you all the time. To Mike and Margaret-there's not a day that you are not in our thoughts and prayers. We hope that during these holidays your hearts may be filled with peace. We hope that Grace is still smiling and going a mile a minute! God Bless
Wednesday, December 10, 2003 10:33 PM CST Day + 138
I know that it has been eight whole days since we last updated Bella's journal. The days seem to be flying by. It seems that we are just too busy enjoying our daughter some days to do the journal. We do not mean to leave everyone hanging of course as to just how well Miss B has been doing as of late. She is gaining courage in cruising around the house. It is entertaining to watch her improvise when trying to get from point A to point B. You can almost see the wheels turning as she tries to figure out if she can stretch her arms far enough to reach the end table while still maintaining a firm grip on the couch. And she loves to use the people around her to help her on her journeys. People lend arms and fingers and even feet to help Bella cruise around. She has a few main goals as of late it seems. Those goals include trying to get the Christmas tree, trying to get the garbage can, and playing with the computer! The other night she was pushing her "push push" around the room when she locked her gaze onto the Christmas tree. She looked so determined to get at it and started her push toy in that direction. She had decent speed built up and proceeded to crash into a few presents while trying to get to the tree. She fell a bit short however and had to settle for staring at the pretty lights from a closer point of view. I have a feeling that it will not be long until she has achieved all of her goals and we end up buying new bulbs for the tree! We had a visit from the therapists today! Bella is always excited to see new people as long as they do not come with meds or shots in hand. And we all know that therapists have the coolest toys! Bella did her best job of showing them her tricks! They had not seen her since a couple of weeks before we left for Minnesota and she has learned so much since then. They were impressed I think with her balance and coordination. She even threw in a few of the words she knows for good measure. We are going to get her started with two visits a month at least with both PT and OT. We still have to figure out if they have a speech therapist to send our way. As the holiday grows more near Karen and I are reminded daily of the best gift that we could have asked for. We got to bring our daughter home!
Tuesday, December 2, 2003 10:38 AM CST Day +130
Bella is definately getting her appetite back. She had a whole jar of baby food-which was never a big feat before her transplant, but she hasn't done that since! AND she ate her fill of our supper as well! She was loving the chicken...she's definately Everett's offspring as chicken is a staple in his diet.
We scheduled therapies to come on the 10th. They will be here at nine, and then we take Bella for labs at St. Lukes that afternoon. It seems strange to only have labs once every two weeks. Its nice though. Lately her line has been backing up later in the day, after we have already flushed her. It makes me wonder if her blood pressure is higher again? We just have to flush her twice a day now. We are going to call and talk to Katie about it though. It worries me. Hopefully it will turn out to be no big deal and she can still wait til January to get her line removed. I would hate for her to have to get stuck every time she needs blood drawn! I remember when they were trying to get her diagnosis and we had to go to the hospital two weeks in a row for her to get blood drawn and they sure had a time with it! I couldn't even stay in the room cuz she was just screaming and she'd look up at me as if to ask 'WHY THE HELL ARE YOU LETTING THEM DO THIS TO ME, MOMMY!?' Helpless!
Bella's personality seems to be emerging like wildfire lately! She has become so smart and funny and its amazing to realize that she is a real person! Maybe that sounds weird to you, but before she was just this baby that needed care. Now she is so entertaining, and she finds things humorous and she has preferences in TV shows and food. It's so cool. The other day she was giggling at Blue on her video. And, then this morning she picked up the phone, proceeded to mock dial it, and put it to her ear and had a conversation with herself. HAHA! I guess I must talk on the phone too much for her to pick that up!
Futher still, she knows what 'No' means. She is OBSESSED with the computer. She loves to pretend to be typing. Its so cute that sometimes I let her. Her little fingers will dance around the keys and then she'll get excited and just bang on it! Anyway- as I get sidetracked- she always seems to make her way over to the computer and once she fell face-first under the desk into a ceramic statue. So, to avoid this we try to keep her away from it. It's not so easy-as soon as you steer her away, she'll just giggle and make her way back! Well after a long day of running after her and trying to occupy her mind from it, Everett just said 'Belllla... NO!' in a stern voice, and she looked at him and just burst into tears! But she backed away! She actually listened! What one-year-old listens? Not that it lasted long, as she was back at it minutes later, but its understanding on her part all the same!
Today is Max's funeral...please pray for his family. Even though Max is in heaven now, no longer suffering, We are the ones left behind that have the loss and pain to deal with. The pain of losing a child is unimaginable to me. We will be thinking of the Ciccarellis for many days to come.
Everyone stay warm! And keep checking on Isabella! God Bless!
Sunday, November 30, 2003 6:28 PM CST Day +128
In case you have not noticed we took a few days off from the journal. Partially because our computer is a total piece and partially because we have simply been enjoying having our daughter home. Bella took her first solo steps yesterday! She has taken one or two a few times, but these were actual premeditated "I want to get somewhere" steps! It was awesome of course and we tried to coax her into more solo flights, but she was on to us quickly and put her foot down. Actually she put her butt down! She has been enjoying time with her big brother Brady. It seems that he can make her laugh by doing just about anything-or nothing! Maybe it is because he is more her size? Or maybe she has seen all of Daddy and Mommy's tricks? Hearing her laugh is a wonderful sound regardless of who causes it! She is adapting to new faces rather quickly. I say "new" but they are really all of the happy faces in her life before she went on her northern quest. More than a few people have gotten the look from Bella. It is a look of her trying to figure out who they are and if she has seen them before. Or maybe if they have ever given her a shot or made her take a medication? It has meant a lot to us that people have gotten their flu shots. It helps Boo so much and gives us some peace of mind! Bella has taken to eating again. Not that she ever quit eating. She has such a strong interest in table food though and has swatted many a jar of baby food away as of late. She is a huge fan of Blueberry Buckle! Like Daddy like Bella! I love that stuff! I snuck a couple of bites when she was not looking! There is not much else to say for now. Bella is doing wonderfully and we are so happy to be home!
Thursday, November 27, 2003 9:58 PM CST Day +125
HAPPY THANKSGIVING!
Today we had a lot to be thankful for. We went to Grumpy's (Everett's Dad) to celebrate. Bella got to sample all the classic thanksgiving entres. She loved the sweet potatoes and green bean casserole. Bella seemed pretty excited to see everyone and of course was loving all the attention!
Sadly, Mighty Max passed on yesterday, and we would just like to offer our deepest sympathy to his family. Especially his parents, as I'm sure this day has been a hard one. We continue to pray for you.
We haven't had a chance to update this week, so I will give you a summary. We went to see Dr. Amir Tuesday morning, and were told we would need to come back the next day to get her labs done so that they could have a chance to read thru the instructions and be more aware of what exactly needed to be done. Then, the next morning we were told that they were unable to do the needed labs at the clinic and were sent to St. Lukes. After some confusion and much nervous tension....we found our way up to infusion, and Bella was successfully drawn and flushed. We felt much more at ease after realizing they weren't in the dark about her central line. So, that was yesterday, and the CSA gets sent up to Fairview, the other labs are done at the hospital, I believe, and results will be sent to Amir. We hope to find out that everything is stable still!
We'll keep everyone updated as any news comes about.
Please visit Max's site and offer his family your sympathy. They have endured so much in the past few months! I hope you all had a wonderful Thanksgiving. We all have so much to be thankful for. Each day we get to share with those that we love is a blessing in itself. Don't take a second for granted.
Saturday, November 22, 2003 3:03 PM CST Day +120
Hello all! We are home! We made it back late last night. The trip was not fun! We left around Bella's bedtime, thinking that she would be more likely to sleep during the trip. I think she slept an hour total, and it was very irritable, broken sleep. She was not used to having to sit in her carseat and sleep. We made it though, and its such a surreal feeling. She slept in her own crib for the first time in over 4 months! When I brought her into her room, she saw all her toys that she hadnt in so long she let out a delighted giggled and insisted on playing with them all before bed! I didnt mind staying up an extra hour to appease her! She's definately earned it! She seems to sense its home though, she doesn't seem to have any confusion as to why we are in a different place. She adjusts so easily to things nowadays.
Before we left yesterday, Bella got the privledge of playing with Anthony for a bit. His dad and aunt thought Bella may have reminded him of his sister, Gianna! We also got to say goodbye to Bella's favorite aide, Sarah-whom we will miss so much! On our way out the door, we saw Taylor and Jen and Taylor gave BElla a sweet goodbye kiss! When we make our trip back up, we plan to visit with our friends in Minnesota!
There are so many ppl we met that have had such an impact on our lives. Where do you start with the thank yous? All the doctors, nurses, and aides... every caregiver, and volunteer. There is so much love for these children from people that don't even know them. 4A was a hard place to be, but the kind care given to our child by all the AMAZING ppl on that floor made it so much easier. There are no words, no measure of the gratitude in our hearts. And the giving doesn't stop once you are discharged from the hospital. At RMH, there is always a person willing to listen to your fears, offer encouragement, even if their story has its own pitfalls as well. I want to thank Jen for always having some peice of advice when I needed it most, and for offering to help in any way she could. Also, Mike and Margaret-although you haven't made it over to the house YET, your constant courage and hope have inspired us to 'just believe' in our daughter. We wish you the best of the best and pray everyday for your amazing son. I don't want to leave out anyone, I could go on for days giving thanks to all those that have helped us in so many ways. Some even unknowingly. I have witnessed such a strong love for life by so many, and it has touched the deepest parts of my heart. I have benefitted from this experience as much as my Bella has. She was given another chance at life, and so were we. I feel more alive than I ever have. My eyes and heart are open. Thank you all so much. For being Bella's supporters-whether family, friends or absolute strangers. You all are God's angels. He works through us. And I know that Bella has had him at her side- through all of you.
Thursday, November 20, 2003 10:48 PM CST Day +118
We took Bella to clinic today, and thought it'd be the last time. But, her hemoglobin dropped to 8.2. They think it's becuz of all the added blood they needed for her 100 day tests done on Monday, but they don't want to send her home on an 'empty tank'. So, if its dropped anymore by tomorrow morning, she will need to get a RBC infusion. We were going to go back to say goodbye to everyone there anyway, so we just hope it won't take up our entire day. She also has her last visits with OT and PT tomorrow afternoon.
We found out today that 6-9 months post-transplant, Bella's blood type will change. She was born B- (like mommy) and her donor is O+, and that's what hers will change to. Coincidentally, that is her Daddy's type too. Cool, huh? I don't understand how her body will accept the RH factor change most of all, but just the whole process is baffling to me!! Isn't it amazing?
Bella will be keeping her central line in when we come home. They plan to take it out when she comes up for her 6 month checkup. It is only an outpatient procedure, and we know she'll handle it like the champ she is! The benefit of having the line stay in is that Bella will keep seeing her Dr. at home on an every 2 week basis, having labs drawn, and if she needs any transfusions, she won't need to be poked!
Tonight Everett and I took Bella down to play Bingo, as they have it at RMH every Thursday night. I've only attempted to bring her once before, and she just squirmed and whined, but I thought with two of us to entertain her, maybe itd work better. Everett ended up watching ALL our cards and I played with Bella and Taylor. I think I got the better end of the deal!! I'm really gonna miss Taylor, and all the kids here at RMH. I know Bella will too. Taylor gave her a kiss tonight right on her masked face! She's so sweet! I'm sure Bella will be VERY happy to play with her big brother, Brady, when we get home though!
Isabella seems to be getting more gutsy when it comes to her walking along things and getting places more independently. Lately, she has been trying to 'run' away when we play the 'getchoo game'. She can't run, mind you, but she scoots along the couch as fast as she can, all the while giggling, and its the best EVER!! Well, tonight I was playing it with her and she got a little overly excited and tripped on her own foot, winding up bopping her little head on the floor! I felt so awful! She kept rubbing her head, like 'oww mommy!' I hope she'll still play the getchoo game with me!
Please keep praying for Max and his family. (www.mighty-max.com) He is a very special boy, and is VERY loved. Send your well-wishes his way!
As always, thanks for checking on Bella, and hope to see you all soon when we return HOME!! God Bless!
Wednesday, November 19, 2003 10:53 PM CST Day + 117
We took Bella to speech therapy today and she had fun. They always have the best toys at therapy. Bella was more interested in playing than working on her words and identifying objects though. It was the last time she will see her speech therapist up here, but she will have all of her therapies when we get home. We do have to go to clinic tomorrow for the last time! There is much to do as far as planning appointments when we get home with our regular doctor,etc. Bella will miss her friends at clinic, but I know that she will not miss the waiting and being given the once over every week. We started the official packing tonight. It is odd how much more stuff we seemed to accumulate since we have been here. It happens to everyone that spends times at RMDH though as we always see carts full of stuff going out the door. When you have to make it home for a while I imagine you need to surround yourself with stuff that makes is seem that way! We still have to do all the yucky stuff like cleaning and washing all of the bedding. Whatever it takes to get the heck out of here!
The excitement of the day had to be when we agreed that we wanted to shave Boo's sideburns. She has these CSA sideburns that came along with all of her other hair growth. We did not take the razor to it-we just used the clipper and took them off. We then decided to trim her neck and shoulders up a bit too. Anyway-we ended up trimming most of her back hair as well. It was strange to look at a much less hairy Bella. It will most definately grow back as she will remain on CSA for some time. It was entertaining though to watch her spin in a circle trying to see just what the heck was going on back there. After trimming her up we decided to give her a bath to alleviate the itching. That and she was due today anyway! She was standing alongside the tub as she always does. She was leaning forward to watch the water go in and there she went headfirst into the tub. We managed to catch her before she did any harm to herself though. We were both standing right behind her so all we had to do was bend down and scoop her up. Plus there was less than a half inch of water in the tub. I think it scared us all more than anything. After all of this excitement it was time for a dressing change, meds,Blue's Clues and bed! We will keep you all posted as to what happens at clinic tomorrow! Most likely a bunch of goodbyes!
Monday, November 17, 2003 12:36 AM CST Day +115
Everett and I discussed whether or not to post such wonderful news or to call each and every one of you so you could hear the excitement in our voices. We don't want to jinx it, as it took us three tries to get out of the hosptal- but Dr. Peters told us today that Bella's physician back home would love to take on her after care and that we are free to go as early as the end of the week! We are both thrilled and filled with anxiety. We don't know what to expect. On the one hand we will be close to both of our loving families, but also further from our adopted support up here. We have grown very comfortable knowing that anything Bella could need is 2 blocks away at Fairview. Everyone has been so helpful with anything we needed. It is a scary thought to be 'on your own'. We do know they are a phone call away, and with my overly worrisome personality, they might start screening their calls!! HAHA
We are just so overwhelmed...there's so many emotions that accompany this news..its hard to express it. Pray for a safe journey home, and smooth sailing thereafter.
We got the added news that Anthony got out yesterday and had his fist clinic visit today! Way to go Anthony! You have done so well so far! And we wish you and your family the best!
Taylor and her family are getting ready to move out of the Ronald McDonald House as well. They have been here longer than most, and they definately deserve a fresh start! Good luck to them!
Please keep praying for Mighty-Max as well. He keeps his fight strong, and we won't give up on him. He and his parents are such inspiring people!
We feel so blessed to have met such wonderful families up here, and hope that in the not-so-distant future they will have the excitement of going home as well!
As always, we will keep you posted on new developments. We return to clinic on Thursday for some last labs to make sure she is ready to hit the dusty trail. If all goes as planned we will pack up and be cruising along on Saturday night. I know I will be repeating this a million times in the weeks to come, but Everett and I would like to ask all you anxious Bella-lovers to make visits easier on her, and Mommy and Daddy's fears bye only coming a few at a time, taking off your shoes and coats at the door, and washing your hands before touching her. This will cut down on any germs being transferred to her. She is still immunosuppressed! And as I posted before as well, it is preferred that you have had your flu shot!
We are still in disbelief as I type this! SO HAPPY! God Bless all of you that have followed Bella through her huge life-altering ordeal. We love you all!
Saturday, November 15, 2003 10:30 PM CST Day + 113
Greetings everyone! Firstly, Bella wants everyone to know that she is excited that the Hawkeyes beat the Gophers today! I know it sounds like a joke, but the girl will sit and watch football for a few minutes. We broke out of the house today for a little stroll around the neighborhood. I bundled her up in her snowsuit and a couple of blankets and we were off to cruise around. She had fun staring at everything even though she can hardly move in her snowsuit! Everyone says she looks like a stuffed animal! Today I was trying to teach Bella new tricks. We worked on blowing your cheeks up with air and squeezing it out with your hands. She is great at squishing the air out but not so good at keeping the air in her cheeks! She would laugh every time she squished my air out. It is the smallest thing to learn, but we both got so much fun out of it! She ate very well today which is always good. She has a new found love in eating chocolate though. I gave her some today and you would think that it was the best thing that she has ever eaten. Maybe it was? Mommy is coming home from her cleaning expedition tomorrow! Bella will be so excited. I keep asking her "where is mommy?" and she will put her arms in a shrug and look around. It is beyone cute! She also did it after taking bites of food too though? As if to say "where did the food go?" We have clinic tomorrow so we will keep you all posted on what we find out. I love this once a week stuff!
Thursday, November 13, 2003 9:50 PM CST Day + 111
There was a whole lot of nothing going on in room 434 today. Mommy left around two in the afternoon to go home and clean the house more in anticipation of Bella's leaving Minneapolis before too long. Bella was a couch potato today. I tried everything to get that girl to play. Either she is bored with all of her toys or I just do not know how to play with them! She had a strange variety to eat tonight. I think she felt like eating a little of everything. She had half a meatball,some spaghetti, part of an oreo,cereal with fruit medley in it, and grape juice. She did a great job of getting most of it down, but she always has trouble with grape juice. She is always entertaining to watch. I think that there are days when Bella just wants sit and watch Blue's Clues. Today was one of those days I guess. More tomorrow I guess!
Wednesday, November 12, 2003 10:47 PM CST Day +110
Isabella had a pretty good day. I think she is getting a little stir crazy being cooped up here all the time though. (I know I am!) So, tonight she and I made a trip to our friend, Sarahs house. Sarah made us some spaghetti for supper, and Bella had alot of fun tearing up her room. I think Bella is really going to miss playing with Sarah when we go home.
Bella is starting to eat more! YAY! Her weight at clinic on Monday was back up to 10.5 Kilos and hopefully it will be up more next Monday! She really has taken a liking to Easy Cheeze, or whatever that cheese in a can is called. Shed eat it morning, noon, and night if we let her!
She likes lasagna and spaghetti too. She much prefer Italian cuisine? Not much to report...we are hoping to have good news next week though, so keep checking back! I think Everett's brothers and sister-in-law are planning to come up this Sunday, and we hope they will bring Bella's big brother, Brady too! Bella really misses him so much! Everyone take care, and we'll keep ya posted! God Bless!
Tuesday, November 11, 2003 9:52 PM CST Day + 109
We are enjoying the first day of our week off from clinic! Bella started the day off right by entertaining. I guess that we were a bit too slow in getting her out of bed. She was not complaining, but we could hear her saying "up" "up". She finally got to the point where she was yelling "uuuuuuup"! It was pretty funny! Karen and I laughed and when I went in to get her out of bed she was a very excited girl. It is so nice when she wakes up in a great mood. It was a wonderful way to start out the day. I think that we were all in a lazy mood today. We lounged around and tried real hard to do a whole lot of nothing. We were quite successful as it were! We just did our best to keep Boo entertained and she did her best job of being entertained. She is so much fun to watch! She is getting to be quite the bath time baby now that she has graduated to the tub and lost her small tub that fits inside a regular size tub. She kicks and splashes and of course does a fine job of getting herself and everyone else wet!
The highlight of the day had to be when we shaved Bella's butt! Let me repeat that-we had to trim the our little angel's butt hair! We absolutely love that she is furry from the CSA. We will miss it when she loses it I am sure. It is cute to see her in the tub with all this hair all over. It becomes a problem though when she has a dirty diaper. It gets a bit messy and we just felt it was not the best for her as far as infection risks and cleanliness. So after her bath we got out the clipper and trimmed her up a little. It will work out better for everyone! It is just funny to tell someone when they ask you what you did today! That is all for today! More tomorrow everyone!
Monday, November 10, 2003 10:22 PM CST Day +108
Bella had her 100 day evaluation today with Dr. Peters, and he said everything is looking good. Her counts are still good and we will have more engraftment updates in about a week or so. He also granted us the rest of the week off from further clinic visits. We won't return until next Monday! What will we do with ourselves? He is going to contact Dr. Amir, Bella's primary family doctor, and see what he feels comfortable with as far as follow-up care when we return HOME! No dates were discussed, but we are taking his making arrangements as a step in the right direction! He will let us know what he finds out at our next appt. Bella has been eating a bit better, and usually mooches off our plates at every meal. I like that she's getting to try different textured foods though. She still has no teeth, but I'd like her to attempt to learn to chew. Plus, her speech therapist said that any stimulation of her mouth provides encouragement for her to talk. So I say 'Bring on the mac and cheese AND ranch!' Tonight she tried some stuffing and mashed potatoes and even turkey! She ate well, and I'm so happy! Her weight is slowly returning and stabalizing. We hope that the nutritionist is happy with it as well. Hopefully we wont have to keep cal counts and we can stop buying this expensive pediasure!
She got her flu shot at clinic today too. OUCH! And her doctor is asking anyone that is going to come in close contact with her (family and visitors) to PLEASE have your shot as well. It might just be an annoyance to us but to her it could mean a hospital stay.
Tonight we got a nasty surprise when Everett lifted Bella off the floor, where she'd been playing, and found a 'puddle' of YUCK in her place! Her poop had snuck it's way out of her diaper and onto our carpet! EWWW!! Unfortunately, there are still slight streaks of blood in it too. Everett and I seem to be the only ones alarmed by it though, as neither Katie, nor Dr. Peters are. So, we try to just keep our nerves under wraps.
Well, we will keep you updated. There might not be much to report in the next few days. We will probably get her to some therapy appt. But, if you dont hear news, don't be upset! We're going to try to enjoy our days off from clinic visits!!! God Bless!
Sunday, November 9, 2003 9:56 PM CST Day + 107
There was a whole lot of nothing going on in the big city today. I am not complaining! Bella was a bit crabby today though. I think that she has to throw a day like that in the mix every once in a while to remind us that she is not quite the angel we make her out to be. I would imagine that she gets bored just like the rest of us though. I did take her out of the room to grab some food around dinner time. She had a dozen people smiling at her and she froze up. No one got a wave or a smile. Boo tends to get a bit shy when it comes to making new friends. She has to warm up to you before she starts entertaining. Her diaper rash is looking better today and hopefully it will continue to go away as the week progresses. That was about it today. Bella got to eat more lasagna for dinner as well as macaroni and cheese with ranch dressing. I can only imagine what it must taste like but the girl loves it! Tomorrow Bella gets her 100 day checkup. It is a week late, but hey what can you do when the docs get busy! They are going to check her engraftment percentages as well as her enzyme level so we will keep you all posted as to how those turn out. It usually takes a week or so to get the results back though. Everyone keep up the happy thoughts as we get another day closer to taking our baby home!
Saturday, November 8, 2003 9:51 PM CST Day +106
Happy Saturday! It was kind of a bummer for the Iowans in Minnesota as the Hawkeyes managed to lose to Purdue today! Bella was just beside herself! All kidding aside it was a fun day for Bella Boo. She slept in a tad bit-until nine anyway. She was in a pretty good mood all day which is always awesome. We had to take Sarah to get her tire fixed around noon so we loaded everyone up and went for a miniature road trip. Bella got to have her first dining experience at Arby's. I personally can not stand most fast food,but Boo more than enjoyed herself! She ate some of Mommy's roast beef sandwich and curly fries as well as Sprite. That girl loves soda! She calls it "mop". I am not sure why she is able to say the last "p" but not the first? Shrug. We also took her to visit the furniture store next door which is just about the most boring place that you can take a child as small as Bella. Sarah came over to wach Bella so Karen and I could escape for a couple hours and watch a movie. We decided on Scary Movie 3 and it was pretty funny! It was nice to get out together. I swear that I hardly remember what it is like to be anywhere with Karen that is not hospital or clinic related. We gota little lost in the shuffle and I am hoping that we can find ourselves again. It was great to be together though-if only for a couple hours. We cruised whatever tiny mall we were in and went to Barnes and Noble. We bought Bella a new Blue's Clues book and picked up The Hobbit for ourselves. I know that it sounds silly, but I think that walking with Karen and holding her hand was the highlight of the day for me! We got home and no one felt like cooking. We decided to order in some lasagna which turned out to be not so good. Bella loved it though!
She ate so much lasagna and garlic bread! And she swiped some of Mommy's orange soda as well. It seems that all the wants is table food anymore. If only she had some teeth-it would be so much easier for us all. The only downside of the day is that Boo's diaper rash is not getting any better. It is like open sores on her bottem and she cries so much when we change her. We apologize in advance to her before we change her, but it just seems to be pretty rough on the girl. Hopefully it will start to clear up. Otherwise we will have to find something other than butt paste to treat it with. I guess that is all for today! Keep praying for Bella and all of the other kids who need a few extra prayers at night!
Friday, November 7, 2003 10:27 PM CST Day + 105
I had to take Boo to cinic today. It started off with a lovely 45 minute wait for the security van to come pick us up. Needless to say we were late getting there. Luckily though they were not busy and we squeezed right in. Bella's counts were great today. Creatnine was down where it should be and her platlets and white blood count were both up! We still do not have an answer for the mysterious blood in the stools. If the doctors can not figure it out soon I am afraid that I will have no choice but to enlist the help of a pup named Scooby Doo! It seems that he can figure anything out! Bella was in a great mood today! She played and giggled and is learning to love strawberry flavored Pediasure. It was an otherwise uneventful day. We did take Bella over to Sarah's house for some playtime tonight. It gave her a change of pace and some new furniture to climb around on. We did manage another weekend off from clinic which we are all excited about. Mommy is still a bit under the weather, but I guess that I dont' mind taking care of both of the ladies in my life. Gives me something to do in this place! I guess that is all for tonight. If you could all include my aunt in your prayers tonight I would greatly appreciate it! Her name is Mary and she needs all of the support and prayers that she can get!God Bless!
Wednesday, November 5, 2003 10:02 PM CST Day +103
Bella had today off from clinic. She was crabby pretty much all day Her bottom is sore and seems to really bother her when she gets changed. "Bother" would be and understatement really, she scremed bloody murder when I wiped her. We will bring it up to Katie on Friday. She goes in for labs only tomorrow so hopefully it will be a quick trip. I've been sick the past couple of days and am forced to wear a hot mask all the time so as not to infect others. So, I think it will just be Everett and Bella off to clinic. Today Bella slept in til quarter to 11!! I actually don't know how late she would have slept had I not gone in to check on her! I was so worried when I squinted at the clock and realized how late it was! She must have been tired from all the times she likes to get up in the middle of the night and demand her butt to be cleaned and her bottle to be refilled! The one good thing about her waking in the night is that she drinks a lot and gets quite a few good calories added to her daily intake. We are still having to keep track. Hopefully they will be okay'd by the nutritionist this week and we won't have to go on TPN or anything. Pray that we get answers about her stool...soon. So that we can come home for the holidays! God Bless you all and please include Maxx and Taylor in your prayers. Maxx is making tiny improvements, but improvements all the same. And, Taylor is getting ready to leave RMDH!! We would like to wish her family good luck in starting a new chapter in their lives! Way to go Taylor!
Tuesday, November 4, 2003 10:27 PM CST Day + 102
We had a very slow trip to clinic today. All that we had scheduled were labs, but it took forever to get to clinic and forever to get back when we were done. The security van runs a bit slow most of the time and we had to wait half an hour on the front side and forty minutes on the back end. I am a patient guy, but I can not say the same for my daughter when she is crabby and just wants to take a nap! Her counts were up today due to the fluids that she got yesterday, but we still have to come back on Thursday and Friday. Hopefully we can catch the weekend off though! We all know how much Bella likes to watch football! Bella was a bit crabby all day though. I think that she just is not feeling the best. There are a million things floating around right now. Karen is sick as we speak and I hope that Bella did not pick anything up as well. We did the usual tv watching and playing today. Nothing spectacular or out of the ordinary. She did entertain us muchly today! She was drinking Sprite and making the best faces while doing so. She also got to enjoy and ice cream bar. She has yet to master eating them, but I have seen plenty of adults that make a decent mess with them as well. She provided many smiles today. It is so wonderful to see her personality grow with each day. She is so smart and a very quick thinker! Maybe we just notice the small things more now? For all that she has been through there is not much that we take for granted. I can not wait until more of you can share in Bella's tricks and smiles and adventures. I can not think of many things better than a smile from Boo!
Monday, November 3, 2003 9:59 PM CST Day +101
Bella had clinic today, and her counts were good, but her bicarb and creatnine levels weren't what we'd like to have seen. Her CO2 was down to 21 and her creatnine was at .9! So we had to stay and get fluids. She hasn't needed them for quite some time, so we're a bit disappointed. Hopefully she will quit pooping so much and hold on to some of her hydration!! I talked to Katie today about the blood that still present at times in her stool. She still doesn't feel concerned. She is showing no other signs of GVH, and she said that if it were GVH, the blood would be more than small streaks and she'd have no form to her stool, which she does. We hope that they will figure out what's going on soon though. Their hunch is it's a small fissure or crack in her lower colon or anus (sorry for all the 'yucky' talk) and its just getting irritated at times when she goes to the bathroom. If it is that, it will heal in its own time and isn't cause for alarm.
We go to have her labs drawn tomorrow to make sure she got enough fluids today.
We'll probably be scheduling some more therapies as well. They seem to be doing a world of good- as Bella got into crawling position to try to go get a toy today! She was on the floor and rolled her ball out of reach. I was doing the dishes at the time and wanted her to at least TRY to get to it herself. She sat there and whined at me to get it. I said "Go get it, Bella" and pretended not to watch. She leaned over and got on all fours and proceeded to bicker about it until I helped her slide over to get it. When she did though we celebrated and she clapped for herself!!
Tonight I also bathed her without her baby tub. I haven't done this but maybe once before. I am scared she'll slip out of my grasp and suck in a lot of water.(can you tell I'm overbearing?) But, in her little tub within the tub, she gets upset cuz she can't splash in the water as much. She had such a fun time tonight! She got me all wet and didn't complain AT ALL while I scrubbed her furry body! I think I will retire that old thing for good. She's a big girl now!
Keep praying for good things, and thanks, as always, for checking in on our angel. God Bless!
Sunday, November 2, 2003 10:27 PM CST Day +100
YAY! Bella made it to magic day 100! I'm not so sure how magic it has been though. She has been quite cranky all day. We are just so happy to have made it this far with so little problem. Keep praying for our beauty! And don't forget all the kids with Hurlers! They are an amazing bunch! Sorry the update is so short tonight-we see Dr. Peters in the morning and will try to schedule something with the GI specialists for a better look at whats going on in Bella! When we know more, we'll let you know! God Bless!
Saturday, November 1, 2003 10:04 PM CST Day +99
I can't believe that tomorrow is 100 days post-transplant for Bella. She is doing so well! She has taught me so much, and continues to each day. I feel like her father and I give her lessons on where her eyes and nose are located, but she's teaching us the bigger picture. There are no words to depict what deep love and admiration I have for this little girl, but I'll give it a shot anyhow.
-----------------------------------------------------------
I've witnessed a miracle
shed a tear of pure joy
learned what true heartbreak means
and how its nothing to do with a boy
A gift from the heavens
a flicker of light
that warms the depths of my soul
and sets my wings into flight
She has the face of an angel
and the touch of my Lord
every smile is music
another step toward
understanding how He works
what it is I'm to learn
Is there meaning in everything
for these answers I yearn
I tempt to silence the longing
just accept all my gifts
I hold my daughter close
and in prayer, I lift
my hands and my heart
I promise never to forget
her second chance, and mine
to always live in the moment
I love you Isabella Faith! You are my hero and inspiration!
Love,
Mommy
Friday, October 31, 2003 9:27 PM CST Day +98
HAPPY HALLOWEEN!! Bella looked sooo cute today! ALL the kids did! I even dressed up as a devil, and we all had a good time! Today at clinic Bella got her picture taken with Katie and we went and visited all her old nurses in 4A too! They all thought she was such a doll! Her counts were great again today, and so we get the weekend off from clinic. We see Dr. Peters on Monday. Everett is leaving tomorrow morning to go back home and get our bills taken care of. Being up here alone with Bella should be a cinch though, considering all of Bella's changes as far as being taken off Gancyclovir, lasix, etc. She has been handling being off the blood pressure med, Prazosin, really well still. Her blood pressure is stable and it looks like they won't have to replace it with anything! Isn't that wonderful!!
Tonight RMH had a big Halloween bash for the kids. There was all kinds of cool stuff going on. Although Bella didn't understand the festivities, we tried to get her in on as much as we could. We did a scavenger hunt (which had to be finished by Daddy, as Bella grew tired of it quickly) She had a charicature drawn of her in her costume. It looks like theres a bunny eating her cuz her cat head comes over and sits on top of her head! Its still very cute though. The sweetest thing of all though, was when Taylor, in her lady bug costume, was giving Bella kisses. They are best buddies. It is sooooo cute!! I wish I had gotten it on camera so you all could see it. It was so sweet I thought my heart might break!
For supper tonight Bella helped herself to some pizza and had dirt pudding for dessert. She ate really well and wanted nothing to do with her baby food. Perhaps if some teeth will come through we can feed her from the table more often! After the trick-or-treaters were all done we let Bella have a mini Tootsie-roll pop and she managed it all on her own. It was amazing to watch her suck on it, pull it out to examine it, and stick it back in her mouth, over and over again. I know it's not a large feat to master, but to see my child do anything for the first time, no matter what it is, leaves me in awe. She's getting so big, and so smart. I can't believe how far she's come. We are so proud of her!
Thursday, October 30, 2003 9:29 PM CST Day + 97
Only three days until the magic one hundred. We are excited to reach the milestone I guess,but are more excited to come home. I took Bella to therapy today. She had both physical and occupational therapy today. She did great with both of them. They had her climbing over bean bags and stairs and even up and down inclines. She seemed pretty fearless throughout and only got upset a few times. She is not a big fan of being of being on her stomach and when they make her do it she does a fine job of protesting. They had her bent over walking along two padded boxes and she was not digging that either. She knew that I was at the end of them both though and started making her way towards me. She was crabbing the whole time of course, but she kept on moving closer and closer. Finally she got close enough to lunge towards me and that is exactly what she did. I caught her of course and she laid her head on my shoulder for a minute or two. I think she was starting to get worn out from all of the climbing,etc. She may have been a bit annoyed with them as well? My guess would be a big yes! For as much as she likes to play with them and their cool toys she gets equally annoyed with them when they try to make her crawl,etc. She finally calmed down enough to read a book with Lisa the OT therapist. They were a couple of minutes into the book when Bella began to cry loudly. I had no idea what was wrong until I heard the ever so familiar sound of a very messy diaper! Bella did a fine job! I lifted up her leg and noticed that it was on the mat beneath her. It had gone through her pants and onesie and she even managed to get some on her sock. I had everything in the diaper bag, but a new outfit. I had to borrow pajamas from the therapists. To make matters worse all that they had were large pajamas. I think that they would have fit a ten year old. I had to roll them up so far! She needed socks as well and all that they had were socks that looked as if they would fit me! I tugged them up around her knees on the outside of the rolled up pajamas! They were such a lovely brown color! I had to bundle her up and wait for the shuttle to take us back to RMDH. You should have seen people looking at us. They were problaby wondering what the hell I dressed my child in. I know it had to look pretty interesting and I guess I got a chuckle or two out of it as well! We are excited for Halloween tomorrow! It is Bella's second time around, but first in a costume! We do have a trip to clinic in the morning and I think Karen and Bella are both dressing up. I do not have a costume so I guess I am the party pooper. I could go as Karen, but none of her clothes fit me. I could go as Naked Man,but that would problaby get me arrested. Maybe I can think of something by tomorrow. Like I said before we will try to take pictures for everyone!
Wednesday, October 29, 2003 10:24 PM CST Day + 96
Bella had a great trip to clinic today! It did not take too long and her counts are going crazy lately! Her platlets are over 200,000 and her white blood cells are up to over 10,000! Her creatnine and hemoglobin were great too which means no infusions for awhile! Katie keeps saying how great Bella looks! When doctors and nurses tell you that your daughter is doing great it is a very good thing to hear. She had fun walking all over and shaking hands with everyone. She even tried to raid the toy box of all of it's treasures. She could not decide which toy to choose and soon became bored before making a decision. She is such a fickle girl! We are excited for Halloween! Bella borrowed a costume from Taylor. She is going to be Marie from Aristocats! She looks extremely cute as a kitty and we can not wait to show her off! They have some cool stuff planned at RMDH for Halloween and we are excited to share it with Bella. We will of course get pictures to show everyone! All in all it was a pretty good day. Bella is still working on some teeth so we had to hook her up with Baby Orajel. Hopefully they will come soon! Maybe by Christmas? "All Bella wants for Christmas are her two front teeth!" We also discovered today that Bella is quite ticklish when you blow rasberries on her tummy! She was never fond of it before but now it will render the giggles!
She is becoming quite the couch potato as well lately. It seems that she would rather watch Blue's Clues at times than play with Mommy and Daddy. How do you compete with a talking blue dog? I suppose I have rambled long enough for tonight! Please pray extra hard for little Maxx! He needs all of the love and support that we can all offer him.
Tuesday, October 28, 2003 10:19 PM CST Day +95
Bella had today off from clinic. She did have physical and speech therapy though. She did really well- when she was paying attention. She has a very limited attention span lately! The weather up here was nasty today. It sleeted and was windy and cold! We were hoping to get out of here before the winter hit full on, but it looks like we're going to be seeing snow soon!
Bella has been getting her appetite up for us. We have been pumping her full of chocolate pediasure and she's taken a renowned liking to cereal, which is packed with calories!! YAY! Her weight has been steadily dropping and everyone is assuming its due to her nasty diapers that won't quit, but we want to make sure she's still getting adequate nutrition. We really don't want to have to have her put back on TPN. It's just one more thing to have to get out from under before we can go home. I know its very little to have to deal with compared to others though. And I do feel very blessed. Our little buddy, Mighty Max, is not fairing well. He really needs everyones prayers! Please visit his site and leave his family your encouraging words. They are such wonderful people and deserve everyone's support! Hug your loved ones really tightly today and thank God for such blessings! Thanks for checking on Bella- we'll keep you updated as always!
Monday, October 27, 2003 9:54 PM CST Day + 94
We had a pretty decent trip to clinic today as far as time goes, but we did get to knock a few medications off of Boo's list! She gets to stop her lasix completely and her BiCitra is going to once a day! It does not sound like very exciting to most people but Bella started out with thirty meds a day when we first got to RMDH! She is now down to nineteen a day! She also only has one more day off her Gancyclovir ball! She has been on it for eight weeks and we are very excited to be rid of it! We have been trying to feed Bella more often as her appetite has not been what it once was. She used to eat at least three or four jars of baby food a day and now it is a struggle to get her to eat one or two. She just has too many other things to do I guess. The girl is too busy to eat! She has taken a liking to Pediasure though and it seems to have a decent amount of calories and we are hoping that it is working. She was up .1 kilo today! Very exciting considering that she has been losing weight lately. I am sure that coming off of the Lasix will help as well. Today Karen taught Bella how to shake hands. It is beyond cute! You have to say "Nice to meet you" and she will stick her hand out! She is such a quick learner and was even shaking hands at clinic today! We are problaby biased but it is so cool to us when Boo learns something new! We did have a little excitement at the house today though when they thought they had a gas leak. It turned out to be nothing though and everyone got to come out from hiding. I suppose that is all that we have for tonight! Thanks to everyone for reading as always. Your thoughts and prayers are appreciated!
Saturday, October 25, 2003 9:32 PM CDT Day +92
Bella had a pretty good day today. She had a bit of the 'crabbies' late this afternoon due to her short nap. We played a bit in the hall with Dustin and Rileigh though, and she learned how to share! I love to watch her interact with other kids her age, its so darn cute! Tonight at supper Everett and I were talking to Jen and I was holding Bella, and Taylor was in Jen's arms and the girls reached out to each other and touched hands- it was sooo sweet!
We had to start doing calorie counts again over the weekend becuz Bella's weight is still dropping. I imagine it's her lack of appetite added to the diarrhea she's had for what seems like forever. I really hope we don't have to put her back on TPN, not when we are so close to being able to go home! We should know the results of her stool culture (they sent another one yesterday at clinic) by Mon. or Tues. and I hope its all still negative. I don't want anymore nasty viruses to deal with, and I know she doesn't either. All in all though, Bella has been doing SO wonderfully! Tonight Anthony's parents, Gina and Joe, told us that everyone in 4A says that he reminds them of Bella, and that he's doing just as great as she did. It makes us beam with pride that she is spoken so fondly of, and inspires other families. I really do feel so grateful for how blessed we have been through this all. We knew there were great risks involved, as do we all, and so far (keep praying) she's pulled through like such a champ!
Bella has become really picky about her food, as I've said before, and so I thought maybe tonight we could trick her. You see, she will eat anything that is on our plate, but nothing that is coming from a Gerber jar! I had Everett put a blob of her babyfood on his plate with his food and try to give her bites as we ate. She only fell for it for a couple bites and I had to sacrifice half of my mashed potatoes! She was trucking through them! She wasn't ever really all that fond of them before, but these were chicken & herb, and she's loving anything salty since the transplant, so I guess we'll be stocking up!
Our little buddy, Max, has been having such a hard time lately, and he and his family need all the prayers they can get to be sent their way! He is an amazing kid, and we know he will pull through- you can visit his site- www.mighty-max.com
Thanks for checking up on my angel! God Bless and take care!
Friday, October 24, 2003 9:37 PM CDT Day +91
WBC:9.2
hemoglobin:9.7
platelets:185,000
creatnine:0.7
Clinic today was loooong due to Bella's high creatnine level, she needed to stay and get fluids. We were there from 10am to 1pm! But, since she got all filled up, we get the weekend off!
We talked to Katie about Bella's bloody diapers again today. She said she still doesn't think its GVHD, because she isn't exhibiting any other symptoms. She is no longer on Prazosin, and Everett and I had the suspicion it might be irritating her since it made her vomit as well, but that's no longer the case. Everett noticed though that when she's off the Gancyclovir over the weekend, the blood slows and seems to stop, then during the week starts up again. It may or may not be related, but we will know soon, because the 28th is her last day on 'the bomb'! So far all of her CMV tests have been negative, and they will test it for two weeks after her coming off Gancyclovir, so pray that nasty virus is all gone!! Anyway-back to her diaper fiasco...we agreed that if its still going on after she's finished with the bomb, we will see a GI specialist and she will probably have to undergo a scope (a yucky sounding procedure where they look up her butt with a tiny camera to get a better idea of what's going on up there). She has to be put under for it, so we hope it will clear up on its own, but are 100% for it, if it will provide a more clear picture.
Bella tried chocolate milk the other night at supper, as she conned some of Everett's out of him with those big blue eyes of hers! Well, needless to say, she's much like her father and brother, and LOVES the stuff! She enjoyed more tonight. Guess we'll find out soon enough if she has a milk allergy! Hope not!
Tonight, Bella, Daddy, and I had a lot of fun during bathtime! We played some Disney music and danced and sang along. Bella would giggle at me (guess my dancing is goofy!) and wiggle her butt around in the tub. She even put her chubby fists up to shake her WHOLE self! It was so cute, she had Everett and I cracking up. It made me forget that we were stuck up here and she had gone through so much, you know? I wish there were more moments in the day for times like those for EVERYONE!
Thursday, October 23, 2003 9:10 PM CDT Day +90
Hey Everyone!
We had today off from clinic- yay! Bella is doing about the same. Her bloody stools seem to have come back more frequently, which is alarming to me, and I wish they could give us some reason! We will bring it up tomorrow to Katie. Today I tried some of the physical therapy's advice on helping Bella to transition better from sitting to standing, and vice versa. She gets soooo pissed at me though! She fights me when I help her position her legs right. She just wants to rock over the top of her feet, and Susan showed me how to bend her legs off to the side and shift her weight so that she can get her knees underneath and follow with planting a foot. Well Bella has other ideas and she is very vocal about it! I won't give up though, and hopefully it will pay off! She isn't used to the pressure of her own weight on her knees since she's never crawled, so that's the first thing she has to learn. Wish her luck!
Bella learned 'SO BIG!' today as well! This is good for her range of motion since she doesn't much reach her hands over her head, and an effect of Hurlers is stiff joints. I got her to do it over and over and over today! She's so cute! She is such a quick learner, but once she learns something new, she won't do her old 'tricks'! Today after she learned SO BIG, I tried to prompt her into showing me where her head was and she refused. Maybe she's telling me shes not a performing act! I just get such a kick out of her learning something new, its overkill by the time I get Everett in the room to come and see! HAHA
Bella's attention span has become very apparent of a one year old's lately. She will play with one toy for 2 seconds and be beyond bored with it. I have a hard time trying to entertain her all the time, and wish that she could get around on her own to explore and pick out which toy she wants. It's frusterating when she's reaching and calling for something and I don't know what it is, so I end up piling a ton of toys around her and that's no better! Then she gets bored with the whole lot at once! Her push-push seemed to be a nice change of pace at first, as I didn't have to hold her hands as she meandered about; but it would seem the girl can only go one direction- straight. If she veers off a bit into a wall, she can't get herself righted, and if she ends up at the opposite end of the room, she will just yell til you come help her turn around. Don't get me wrong, it's wonderful that shes up and about! I just can't wait til she's more independant. I know it will help her self-confidence as well!
Well, I guess I've chattered about enough for tonight. Please pray for Might Max, as he got put back on the vent. He is such a fighter, and his family is such an inspiration. They would love to know that they have everyones support and prayers! God Bless!
Wednesday, October 22, 2003 9:59 PM CDT Day + 89
The days seem to go by so slowly as we approach the mandatory 100 days post transplant. Bella and I made a pretty quick trip to clinic today. Her counts are still great and she is up to 165,000 platlets now which is so unreal to us considering that she used to get them every other day! She got the once over from Katie and we were out the door with another day off tomorrow! Her blood pressure is still great since they took her off of Prazosin and she has not thrown up since! I can tell you that I will not miss going to clinic when we are done with this. Everyone is nice there and Boo enjoys seeing them, but the less and less we go there the better! Bella had a visit with physical therapy today and it went well. She worked on getting on her knees and repositioning herself from there. They would love to see her start crawling as would we, but it may never happen. I think Bella will take off walking before she goes anywhere via crawling. She got to swing in the tire swing when she was finished though and she seemed to enjoy that part the most! She also got to get out and go to the store with both Mommy and Daddy. That girl is a devil when it comes to keeping her mask on in the car though. She just looks at us like "what are you going to do-you are all the way in the front seat". Hopefully she only has to keep it on regularly for a couple more weeks. I had to wear one when my throat was a bit scratchy and I hated it! She has to put up with that thing every time she leaves the room and she is such a trooper about it! She has been such a rock star throughout this whole process! You have all heard me say it a thousand times, but Bella is my hero! We have to go to clinic on Friday and then I beleive that we are going to get the whole weekend off! We are crossing out fingers that she will want to sleep late at least one of those days! We had a hallway full at the Ronald McDonald House tonight! Taylor and Riley and Dustin and their moms were all out in the hall with Bella and Karen and I. It was nice to watch the kids play and visit for awhile. They all do a great job of sharing toys and even trade push toys without arguing. We do see a bit of jealousy when they get together, but it is great for them to interact with other kids! We want to thank you all again for your support and prayers as we creep towards coming home! Pray for all good things!
Tuesday, October 21, 2003 11:33 PM CDT Day +88
Isabella had the day off from clinic. We made an uneccesary trip to Wisconsin with her today in search of a First Federal Bank. Needless to say, it sucked! She got crabby at having to keep her mask on 15 minutes into the drive and I finally coaxed her to sleep on the way back to RMH. We did not find the right bank, just a copycat named the same!! Grr! Nor were we able to find an ATM that would let us deposit in it either! Other than that, it was pretty uneventful.
We got to play a bit in the hall with Taylor, Rileigh, and Dustin. Dustin is walking all on his own now and he came and gave me a BIG hug today! It was so awesome! Taylor is almost there, she whizzes around with her push-push like a pro, and Bella tries her best to keep up-shes getting better as well!!
Tomorrow she has clinic in the morning and physical therapy in the afternoon. She hasn't been in awhile, so hopefully she isn't falling behind. We think she's doing wonderfully considering....so we'll see! Thanks for checking on Bella-we'll keep you updated!
Sunday, October 19, 2003 9:44 PM CDT Day + 86
We had to make a quick trip to clinic today. All that we had to do was get Boo's blood pressure checked. It was perfect and we were out of there quickly! They took Bella off of one of her blood pressure medications-Prazosin. It was making her sick every time she took it, which is not a good thing considering that she was taking it four times a day. Her blood pressure is doing great so far! Let's just hope she can stay off of this nasty med for good! We had a pretty uneventful day at the house. Bella got to take another trip to the grocery store. It was so nice out today that she also got to take a walk around the neighborhood with Mommy and Daddy. She loves to get out and see what's going on in the world. Bella continues to be quite the entertainer as she learns new tricks. Today she was teasing Mommy with a piece of popcorn. She would pretend to give it to her and then pull her hand back and laugh! And she is fascinated with her nose now! She used to identify her head and ears and nose, but now all she wants to do is grab her nose and make a "nnnnnnn" sound! It is beyond cute! We just wish she would refresh her usage of ears and nose too! We also discovered that Bella is quite fond of the marshmallows in Lucky Charms. They are easy for her to eat and safe as well. It seems that she is always trying to stick too much of whatever she is eating in her mouth. She loves them though! She is always "after em'" I guess that is all for now! We have clinic tomorrow in the morning and hopefully we will be a little closer to finding out a rough estimate on coming home! Bye for now!
Friday, October 17, 2003 7:49 PM CDT Day +84
Platelets:132,000
Hemo:8.8
WBC:7.6
Creatnine:.5
CO2:23 (went down since they took her down to 2X's, so hopefully she will bring it back up so we dont have to re-add that dose of Bicitra!)
Bella continues to have bloody stools here and there. They are less frequent, but apparent- and we STILL have no answers! This morning, like most lately, Bella puked up her Prazasin, which is a high blood pressure medication that shes been on since before being discharged from the hospital. It seems to really bother her lately and its a rarity we can get it in and keep it there. Katie checked for us and told us today that we could discontinue it and they would monitor her blood pressure. If it goes up, they will try a new medication, as the other two BPM shes on are at the highest doses they can be. I hope that she does well without it. Her blood pressure has been really good so far (as she was on it), and I hope it won't skyrocket with her being off! Bella ate a little bit more today. She really loves her green beans (just like mommy!) and she ate half a jar of squash too. Although they arent high in calories, I'm just glad to see her taking in more food! Her and daddy finished off the mint chocolate-chip ice cream last night, so we'll have to make a trip to the grocery store and stock up again! Shes so cute, when she sees food that she wants she'll start smacking her lips and licking them like she can already taste it!
Tonight Everett was downstairs cooking some chicken (big surprise, eh?) and so Bella and I wanted to go down to say hi, and just get out of the room a bit. Well, I got down her mask and was walking towards her as she noticed I had it, she said 'Ba Bye'! It was clear as day, and she knew her mask meant we were going somewhere! I love that girl-she amazes me with something each day! Thank you all for checking on her, and thanks so much for the guestbook entries! Its nice to read them every day! We have tomorrow off from clinic, so if nothing major happens, don't be alarmed if there's no entry! God Bless!
Thursday, October 16, 2003 10:00 PM CDT Day + 83
I know that we took a couple of days off from the journal and apologize for having worried you all! Sorry! Bella has been doing great! Her counts are great and we have been granted a day or two off from clinic. Her diapers are getting much better although they still have no answer for us. There is less and less blood in her stools and yesterday I don't think she had any! Mommy has been sick for the past couple days and has had to wear a mask around Boo. Neither of them likes this arrangement at all but it is necessary for a healthy Bella! Karen does her best to stay away for the most part as germs are not good for anyone let alone Boo at this time. It works out for them though as Daddy get to take care of both of them! I don't mind, although I expect to be pampered the next time I get sick. I feel a cold coming on this Sunday. Problaby during the Niner's game! I am just kidding of course. Bella continues to practice using the word "up". It is by far her favorite. She is still using it to get out of meds or a doctor poking around. She looks at us with these loving eyes and puts her arms up and says "up". How can you resist picking her up? I can not. I was a sucker for that girl the second she was born! I was tyring to spoil her in the womb with Cheez Ums Pringles and watermelon! I suppose that was spoiling Karen but I like to think that they ended up getting to Bella in some form! Boo also has a new found love in mint chocolate chip ice cream. Sounds weird for a child so young, but they say that after transplant that tastes can change. I think she got that gene from me! Other than that not much has been going on. I took Bella for another trip to the store. We both had fun as usual and I don't care who thinks I am too big to run and ride on the cart! Bella is getting better at navigating her push toy. She has also learned to do a great "roll it and roll it" while playing Patty Cake. Grandpa Grumpy would be proud! We will keep you all posted as we learn more! Thank you for your thoughts and prayers!
We would also like to ask you all to pray for Jennifer Shield's family. She was an amazing girl of thirteen who passed last week. God Bless her!
Sunday, October 12, 2003 11:16 PM CDT Day 79
We had great counts at clinic today! Bella's white blood count is up to 9.1 and her platlets are at 119,000!
Things move very quickly at times as it seems only last month that we had to get platlets every other day. We took another wheelchair ride around clinic today. It is much more fun when no one else is there as there are far fewer obstacles to deal with. It gave Boo the giggles which is priceless! She was a huge cuddle bug today. Which is nice when you are the Dad man. It seems that babies can be a bit bias towards their mommies when it comes to cuddling. I do relish my role as the "large kid" that they get to play with! Bella has been working on identifying her body parts as of late and today she was all about showing me her nose. She would hold onto her nose until I would make the "honk" sound. I really think that she beleives that noses make that noise when you squeeze them! She would wait for it and then smile when it finally came. I am not sure which one of us was more entertained. I decided to take Boo on a little journey to the store this afternoon. It was not busy and she kept her mask on the whole time which was awesome. She enjoys looking at the lights and people and had a great time trying to grab things off of the shelves. Usually I do not notice when people stare at Boo but for some reason today I did. A few people actually asked what was wrong with her and one very forward lady even asked why she was so hairy. I had so many smart ass remarks in my head! I wanted to tell them that I was babysitting for Michael Jackson or something crazy like that, but I kept them to myself and did my best to explain it in a sentence or two. At least they asked though instead of doing the whole blatant stare. None of it bothers me though. I was just happy to have may daughter in the cart at the store doing something so "normal". I wasn't cramming meds into her or watching her get an infusion. I was just a dad spending time with his daughter. After going through something like this I do not take anything for granted with Bella! I find happiness in almost everything she does. Watching her go from not wanting to do anything during ATG days to pulling on her ears and making an "Eeeee" sound is so awesome! Is there anything better than kids in this world? I am in awe of the happiness that children bring to this life. I guess that I have rambled enough! Tomorrow we have clinic and I am going to see if I can get them to give us a date for going home! Or at least something we can shoot for! We will let you all know tomorrow!Bye for now!
Saturday, October 11, 2003 10:25 PM CDT Day 78
Bella and I had a great time celebrating our day off from clinic! She cruised all over with her push toy and is steadily getting better at navigation. Everyone knows that Bella is a dancing queen and today she was shaking her diaper to Blue's Clues songs! This is my second time around with Blue as Brady was a huge fan a few years ago. I think that I have most of the songs and episodes down pat! On a side note-I like Steve so much better than Joe! We worked a lot on learning body parts today. Boo has pretty much mastered head and nose and today she was all over ears! It is so exciting to watch her learn new things! I was hiding around the corner from her today and she was trying to follow me with her push toy. She would get to where she thought I would be and peek around the corner ever so slowly. Of course I would jump out at her and give her the frights! Do you think it is ok to scare your parents when they get old to get back at them? If so I have some plotting and planning to do! LOL! I managed to escape to the gym today with a little help form Sara form 4A who volounteered her services so that I could take a break. Bella had fun showing Sara all of her new tricks and it is always nice to see different faces. We do have to make a trip to cinic tomorrow for labs. We see Boo's doctor on Monday so hopefully we will have great news. I am going to start bugging him as to when we get to break out of Minnesota. We also want to say CONGRATS to Maxx and family for coming off of the vent! Way to Go Maxximus! Everyone put him in your prayers so that he can stay off for good!
Friday, October 10, 2003 11:26 PM CDT Day + 77
Every time that I type the current day I can not believe it. I can remember being at Day - 10 and thinking that it would be a lifetime until we got this far. I would love to tell you that the time just flew by, but sadly each day seems like a week at times. It has gotten so much better since we have been at the Ronald McDonald House though! It was an improvement in everyone's mood! Boo was missing her Mommy today! At least that is what I am going to blame her crabbiness on! I am kidding of course, but I do believe that she misses her mother immensely and with good reason! We did not have to be to clinic until ten this morning so we got to sleep in a bit. For those of you with kids you know that eight in the morning is considered sleeping late! Bella was in no mood for her morning meds. It was a trend that continued on througout the day. She was fighting them all day and it was breaking my heart to have to keep giving them to her. I even sampled them to show her it was not so bad. Our daughter is way to smart for the old "see Daddy likes it" trick. I entertained Bella at clinic today by giving her the world's best wheelchair ride! We went all over the waiting room and down the hallways! I would just like you all to know that if you are ever in a wheelchair I am problaby not the guy you want pushing you! We may have bumped into the heating vent in the hallway a bit. Boo just laughed and we carried on our merry way! She was full of giggles as we raced around our imaginary track. We will call it the BMT 500! Boo did not need any fluids so we were out the door relatively quick and we even get tomorrow off! Hooray for Bella! Now if I can only get her to sleep until nine! I did my best to wear her out before bed. We read every book in the joint and checked out every corner of the room with Bella's push toy. She drives just about as good as Daddy did today! She even showed me her Godzilla impression tonight. I think I watched her knock over a Mega Block building at least twenty times. She does get a lot of enjoyment out of destroying things. Brady is rubbing off on her! We will keep you all posted as to what happens at clinic on Monday. We have to go Sunday, but only for labs! Have a great weekend!
Thursday, October 9, 2003 10:24 PM CDT Day + 76
We started out today with a pretty quick trip to clinic. Bella's counts remain pretty much the same. Her platlets and WBC are great and her creatinine level dropped from .9 to .5 due to the fluids that she received at clinic yesterday. We still have no cause for the blood in her diapers. The blood is becoming less frequent though and her diapers have looked better thus far today! I would never have guessed that I would analzye one of my kid's diapers so much! I can remember in my younger years gagging when the cat would poop on the floor! If you can raise children you trully can do anything! I think that I was about as sick of giving Boo her meds today as she was taking them. We were doing her eight o clocks and she just looked at me with such a sad face as if to say "No more Daddy". I almost broke down. I know that she needs them to keep getting healthier, but I wish that I could just give her one day off from them. Just one day off from all of the meds and chemo balls and everything else. I know that she will get to that point eventually on her own. It seems that she has a smile for everyone despite it all! Bella even put herself to bed tonight-sort of. We were playing on the floor and she was walking along the couch trying to get to her Care Bears on the window. She changed her mind and headed back my way with a little whine in her voice. She made it all the way over to me and put her arms out and dove onto my chest to lay her head down. That girl steals my heart. It made my day! Bella will never know how many smiles she has put onto people's faces!
Thursday, October 9, 2003 4:34 PM CDT Day +75
Hey all! I added new(er) pictures finally! They are kinda big cuz I'm too computer illiterate(SP?) to resize them! Take the time to let them load, she looks sooo cute! There will probably be a better journal entry later tonight, but I just wanted to let you all know that new pics were up for your viewing pleasure! God Bless!
Tuesday, October 7, 2003 10:28 PM CDT Day + 74
It was a beautiful day in Minneapolis today and we tried to make the most of it. We decided to take a little road trip to the Rosedale Mall with Bella. It was easy to find and Bella is always up for going outside let alone to a place as exciting as the mall! So many people to see and bright lights on all of the stores. It is strange how it all looks the same to us adults, yet Boo can find so much amusement in it. It was definately better than sitting in the room and touring the Ronald McDonald House! Bella had a pretty quick trip to clinic today with mommy and grandma Kathi. She needs fluids but they are going to wait until tomorrow as our angel was showing more horns than wings this morning! Her platlets were down a bit today. Nothing major she is still at 102,000! It is hard to believe that she used to have to get them infused every other day! Each day just feels better! I just wish that we could hammer down this virus or whatever is causing her stool craziness!
They still do not know what is going on but we do know that it is not GVH or any of the major viruses! Bella is trying out some new words and "up" is one that she has become very fond of. Of course she always assumes that she is going be picked up if she simply asks. It works most of the time! Who can resist? Being the clever girl that she is though she tries to utilize this word when it is time to get a diaper change or take her meds! Boo is so smart! She had so much fun drinking root beer with Mommy at the mall today! She was blowing it out the wrong end trying to figure out how to suck on the straw! It was funny and no one lost an eye!
Monday, October 6, 2003 10:14 PM CDT Day +73
WBC:7.5
hemoglobin:9.8
platelets:105,000
Bella's creatnine is back up to .6, so she will probably need fluids tomorrow at clinic. Her CO2 finally came up, they upped her dose one more time yesterday to 7ML 3x's daily. Shes still on the low spectrum of normal, but I just think they need to give her body a chance to readjust. My mom surprised me yesterday by telling me she'd be on her way to visit today! She got a little lost, well actually, alot lost, but finally made it about supper time! Bella warmed up to her quickly and they played til bedtime. My mom wanted to go to bed as soon as Bella did, so she could wake up to see her again in the morning! Thats so cute!
The weather up here was beautiful today! It got up to the high seventies, so Everett and I took BElla outside to play. It took her about 10 minutes to find the mud to sit in! Her cute pink shoes are now brown! When we came back in Bella got to play for a little while with Grace, Rileigh, and Taylor in the playroom. Bella gets so frusterated cuz she can't get around like the bigger kids. I know it will come in her own time though!
Tonight I taught Bella to 'roll it' in patty cake. Shes so cute doing it, its not perfected, but definately recognizable rolling! Shes also working on finding her ears. She loves to rip ours off, so it shouldnt be long before shes finding them on demand. Shes getting so smart and so big! We can't wait to get her home so all the family can see for themselves!
Dont forget to sign Bella's guestbook! We miss everyone's words of encouragement!
Saturday, October 4, 2003 9:22 PM CDT Day +71
Weekend clinic 'sigh' 'nuff said?
OK, ok...Bella just had labs today and they are as follows:
WBC: 8.4
hemoglobin: 9.8
platelets:101,000
Creatnine: .5
Her CO2 level didn't go anywhere, it stayed at 16, so they upped her dosage of Bicitra to 3 times a day. Neither Bella nor mommy are happy about that! I hope it will do the trick!
Nothing much to report, just about the same. Shes still having bloody stools, and not eating very much. She's keeping herself hydrated at least though. She started coughing more today, and it sounds more wet than before. I hope that shes just getting that junk out of her lungs and system, and its not a sign of it getting worse. It's so scary going into the winter months, the sniffles and colds are much harder to fight when youre immunocompromised! We just ask that you all keep praying for our Bella, she has done so well so far, we aren't about to get discouraged now!
Please visit Max's site and offer your encouraging words and prayers as well. His family is so strong and couragous, but they need everyones support to help get them through this rough spot!
God Bless!
Friday, October 3, 2003 9:26 PM CDT Day +70
Bella just can't seem to kick her 'baddies'. She is teething for one, and her tummy has to be upset, with all the blood she poops out! I just wish we had some answers! Amy, one of the nurse practitioners prescribed a new med for Boo, Citric Acid. Isn't that vitamin C? Her CO2 level is low, and is probably caused by all her diarrhea, so this medication should replenish that. It's funny cuz I was reading all the directions and cautions, and side effects, etc. And on it it said that it can cause diarrehea- Go figure! It is a pain in the butt if you ask me though. She has to drink some formula before taking it (or I have to force feed her) and then I have to mix the 5ML dose with 1-2 oz of water/juice and trick her into taking it. What fun that wasn't! I hope it does the trick and ends up being worth it!
Her platelet count was at 100,000 today! And her WBC at 6.3. Her hemoglobin dropped a teensy bit, but still good at 9.9. Her creatnine went down to .4, and we were happy to see that! Her kidney function is doing better, and so Boo didn't need any infusions today! We don't get the weekend off like we had hoped though, since they started her on that new medication, they want to moniter her CO2 levels for the next few days and make sure its doing what its suppose to!
Bella and I made a visit next door to play with our little neighbors, Riley, Taylor, and Grace. Its so cute to see Taylor and Bella together. Taylor just whizzes around with her 'push-push' and poor Bella tries to tag along behind her with hers! They kept trading off too, first Bella would want Taylors, and vice versa. I hope that they can play together more before we go home, and they move out as well! I'm so excited for Jen and Joe becuz they have been through such a hard time for so long with Taylors transplant(s). (Yea- shes had 2!) But she looks wonderful, and is doing so well now! You should all visit her site and read her story! The link is here on Bella's page. Max could also use all the prayers you have to offer, hes still toughing it out, and we are all rooting for him! GO MAX!!
Well I suppose I should wrap this up! Keep praying for some sort of result- hopefully a good one, a fixable one! And don't forget to sign Bella's guestbook- we miss hearing from everyone!
Thursday, October 2, 2003 4:32 PM CDT Day +69
Isabella seems to be getting better, at least if measured by her mood. Yesterday she was more interested in playing again. She cruised around with her push-toy for quite awhile, and learned where her nose is. So far, she knows her head and nose! We are working on feet. She gets bored with it quickly though, three to remember might be too much just yet! Lately she has been obsessed with Blues Clues. She doesnt even want to watch her Brainy Baby videos! Just Blue! I think becuz Steve (sometimes Joe) talks 'to' her. She seems to like Blue too!
We found out that Bella's engraftment has gone up! She is now at 93% and 74%! Keep praying to hit that 100% mark! She has still been having loose stools and every so often they're bloody. All her cultures are coming back negative thus far, so we just have to wait to see if anything grows in the next couple days yet. Her desire to eat solid food still sits low, but today she enjoyed licking an apple and eating parmesean cheese. Shes such an oddball! :)
Today we had her eye follow-up with Dr. Christensen. It always seems to take forever to get her eyes to dialate. Today it was no different. She fought so hard against them getting those drops in that the lady almost flipped her eyelids inside out prying them open. I feel so bad having to hold her little arms down. I'm suppose to protect her! I HATE IT! I know she forgets and forgives me minutes later, but I can't forget, and it breaks my heart! They had to do it three times to get her eyes to dialate enough. Dr. C said that things look about the same as far as he could tell. He said there was a slight cupping of her optical nerve, but didnt go into detail. Once he had a look, he wasn't too concerned about anything, and just said for us to have her eyes pressure checked next time she had a procedure where she had to be put under. He said that they felt soft, but he would like to have an exact number if possible. So, thankfully we won't have to have that done again til her 1 year post-transplant week of HELL when we come back and get everything that was done during work-up rechecked! That little girl is so tolerant, I dont know where she gets it from? Heaven sent!
Thanks for all your prayers, Bella is doing so well, and its by power of prayer and faith that keeps us all going!
Monday, September 29, 2003 10:25 PM CDT Day +66
Happy Birthday to me! It doesn't seem to be a different day, but I know that Everett is trying to make it that way, so thanks to him for that! I can't help being consumed by this place though, and all that has to be done for Bella. She is my reason right now. Birthday schmirthday, eh? Today we had a VERY long visit to clinic. Isabella's hemoglobin was at 7.9, and she received a 2 hour infusion of RBC. Dr. Peters also wanted her to get some more fluids to prevent her from becoming dehydrated. We discussed many possibilities of the cause of her lack of interest in her baby food and her bloody stools. I'm going to assume that her low energy level and desire to play like she had been is a result of her not eating enough, and shes just feeling absolutely crummy. Today Dr. Peters was reassuring when he told us that whatever is troubling her is on the low spectrum of risks and problems. He is pretty sure it is not GVHD since shes showing no other signs. She has no rashes and no fever. She looks wonderful, in fact. Her skin is clear and hairy as ever! hehe
He said that CMV (which she had awhile back in her blood and is being treated for by the Gancyclovir bomb) can show up in the GI tract and result in bloody stools. Her tests have been negative for CMV in her blood, and we wondered if being on the Gancylcovir would have prevented this?? I'm confused. But anyway- they took more stool samples and sent them off to be sniffed and poked for a few days. I want some answers!! I dont like the not knowing. It leaves too many possibilities, and lets your mind wander to the horrible place of 'what ifs'.
We did get some good news in clinic though today! Bella is officially equipped with the normal level of enzyme! Dr. Peters said that if that came up, then he suspects her engraftment would have done the same. We hope to find out soon! YAY BELLA!!
Well I think that about sums up todays big events. You know, I bet there are a lot of people who wouldnt mind going back to their 20th birthday. I can say that I can't wait to have this year behind me!! Call and wish me a happy one next year, I promise I'll be in better spirits!
Sorry to be a downer, I just want my baby to feel better!!! Thanks and love to all that wished me a happy birthday though, lets me know I'm loved :)
God Bless!!
Sunday, September 28, 2003 10:48 PM CDT Day + 65
Took Bella to clinic again today so that they could draw more blood for extra testing for any sort of virus. They told me that they believe that Bella has some sort of virus that is causing the blood in her diapers. We should find out some time this week whether or not she has one. They also confiscated her diaper to give it the once over. Hopefully we will have a cause for the blood and a plan of action in the next few days. Boo's eating habits are getting a little better. She has been more welcome to solid foods and is keeping them down. For a while there we were not sure if she enjoyed eating the food as much as she did sending back at us! I bought her a chocolate milk shake from Dairy Queen today and she loved it. We had to take it slow as to not freeze her little brain! It would have worked a little better if she could work a straw the right way, but we will take all the calories we can get. Because of the frequent stools the doctors are worried that she may become dehydrated. It was decided that Boo needed some fluids today at clinic. She got a once hour infusion of saline,etc. She did surprisingly well considering that we arrived at clinic a little after nine and did not leave until just after noon. We have another trip to clinic tomorrow. Hopefully we will soon have a way to get some relief! We all had a pretty good day today! Bella was up for walking with her toy and viewing some cartoons! Not her usual self quite yet, but she is always a joy! We will let you know what we find out at clinic tomorrow! I know that she will problaby read this, but tomorrow is Karen's birthday! I am going to try and bake her a cake without her knowing! Anyway if you see her or think of it scream Happy Birthday at her!Bye for now!
Friday, September 26, 2003 10:54 PM CDT Day + 63
It was an up and down day for Bella today! By this I mean that she was awake and asleep and then awake again and then napping again! This teething of hers continues to make her very lethargic. We played a lot today and although she was into it she seemed to become grouchy after a few minutes of play. I had to keep rotating toys and funny faces to keep her interest. She giggles at the strangest things it seems. I was handing her a plastic cup today and then taking it away saying "mine" and she was laughing so hard. You can always tell when she thinks something is trully funny. Her eyes get squeezed so tight you can hardly see them! Boo did not have any real interst in solid foods again today. I did manage to get a little over a jar in her throughout the day though to go along with her formula. Her weight stayed the same today when we went to clinic which means that she is eating enough to maintain what she has while her mouth is hurting. I think a trip to Dairy Queen is in order! I know that I could talk her into a milk shake! Did you know that ice cream is medicinal? Clinic went fine today for Bella. The usual donation of blood and the once over from Katie. Her platlets went up on their own which is a very good thing and all of her other counts were where they should be. I was delighted to hear that we could take the whole weekend off from clinic and come on Monday! We all know how much I dislike weekend clinic! Bella was now free to watch both college and pro football in peace without any interruption!
Of course as her father I am obligated to supervise her television viewing!LOL! Now for the not so exciting news! I was changing one of many diapers today and noticed that Boo had a little blood in her stool. It was not a lot but enough to worry me a bit. I called the BMT fellow and asked what it could be. She thought possibly graft versus host, but Bella has shown no signs of it thus far and it does not happen with all of her diapers. I know that her Prazosin has been upsetting her stomach lately and I am curious to see if it is disturbing other bodily functions as well. We now have to make a trip to cinic tomorrow to get Bella's diaper analyzed. Just in case it is not blood? I am not sure what else it could be. She does get strawberry syrup with some of her meds but I am sure it does not pass right into the diaper!I am kidding of course, but I am worried for Boo. We do not have to do the usual clinc duties tomorrow. Just the diaper investigation and checking our Bella. I am sure it is nothing. I will keep you all informed of what we find out tomorrow!
Thursday, September 25, 2003 9:41 PM CDT Day + 62
Bella continues to battle her teeth. Her gums are so swollen. I feel so badly for her.She does not have much interest in solid foods as of late, but she has been drinking a lot of formula for me today! Calories are calories in any form! We can always tell when Boo is not feeling the best just by watching her play habits. She played a little today, but wanted to sit and watch television more than usual. Could be that she has recently taken to Blue's Clues? Karen and I both feel that Steve was a much better host than Joe by the way! We still feel that Bella's Prazosin is making her stomach upset. It seems that after taking it she is more prone to throwing up. She only got me once today, but I saw it coming and had paper towels in hand! We have to go to clinic tomorrow. We will not need platlets so it should be a quick trip. We are hoping and praying that she does not have to go back on TPN because of her lack of eating. It is not that she has no interest in it, only that her mouth hurts so badly that she wants nothing in it. She even passed on ice cream with chocolate syrup! Our angel was very sleepy and just did not feel the best today. Hopefully tomorrow will be a better day for us all!
Tuesday, September 23, 2003 10:28 PM CDT Day +60
Bella hasn't been feeling well today. Her teeth are bothering her quite a bit. Thankfully, no fevers, pray it stays that way. We don't want her back in the hospital! I tried to keep her comfortable with tylenol, and baby orajel,but they must really hurt, cuz she was so fussy! I did get a couple smiles and giggles, but she was definately not herself. I hope they cut through soon so she won't be so miserable! She just wanted to cuddle on mom all day, which I loved, but I didn't get much else done! We made a short trip to the pharmacy for an emergency refill on her Gengraf, (I didn't realize we were so low!) other than that, though, we stayed in our room. No clinic, but I take her in the morning. I hope Katie will shed some light on her mood, I did speak to her over the phone, and maybe I'm being overbearing, cuz she didn't seem concerned, but I just don't like seeing Boo so unlike herself. Did that make sense? Anyway- her eating was down too, which maybe is also becuz of her teeth, if they hurt? I'm hopeful that's all it is, and nothing more serious! I will be sure to let you know if anything comes of it though!
Monday, September 22, 2003 10:18 PM CDT Day +59
Bella's WBC was at 4.6 today at clinic. She say Dr. Peters and her nurse coordinator, Theresa today for her 60 day post-transplant check-up. Her platelets were sky-high at 90,000! The infusion she got on Saturday bumped her up sooo much! Since she hasnt been needing platelets but like once a week lately, Dr. Peters brought her parameter down to 30,000, it was at 40. But, if all goes as they hope, she won't be needing much more assistance with keeping her platelet numbers up there!
Bella also got her 3 stitches out today (from her biopsy). She was definately making it known she did not enjoy it too! Then, with her crabby and tired, we had to lug her down to get chest xrays done. She had a really good nap when we got home! We should know more about the labs for her enzyme and engraftment levels in about a week or so. They said 7-10 days, but you know how that goes! Pray for GREAT things! Have a good night!
Sunday, September 21, 2003 10:44 PM CDT Day + 58
It was a pretty quiet Sunday for Boo today! I know that she was upset because the Niners lost again this week! Ok,ok, I was upset that the Niners lost. Bella has continued her streak of sleeping through the night. She may have been up once, but other than that she slept soundly. It is strange though that when your child finally starts sleeping through the night you still do not sleep. We are so used to getting up with her that when she does not wake up we still do out of habit. I suppose that we may get to sleep normally once she moves out of the house!
We got the day off from clinic today which was very cool. Bella has her sixty day checkup tomorrow. We are hoping that it will not take all day! Everyone pray for some great engraftment and enzyme levels! Of course we have to wait ten days or so to get the results back. Bella had some play partners today. She got to visit and play with Taylor and Riley! She had fun and was even good at sharing her toys! She was,however,not very good at sharing her Mommy! Bella was very jealous any time Karen would play with Taylor or touch her in any way! She would give Mommy this dirty look! It is a toss up as to who she inherited the dirty looks from. I guess that is it for today! Not much excitement,but that is the way we like it some days!
We will fill you in on her sixty day checkup tomorrow!
Saturday, September 20, 2003 8:51 PM CDT Day +57
Bella's WBC seems to be recovering from the lesser dose of Gancyclovir. Today at clinic, it was at 6.1! We almost forgot today that she doesnt get the 'bomb' on weekends!
Boo had clinic today, and yesterday they had preordered platelets, since her level was at 42, and anything below 40,000, they have to give her some. So, they assumed she would have lost the 2,000 and would be needing them, well to our surprise, she actually was at 45,000! But, since the blood bank really doesnt like getting things sent back, she still received them, but at least we don't have to go back tomorrow!
Monday morning is her 60 day post-transplant check-up with Dr. Peters. (Even though by our tab she'll only be at +59??) She will be getting xrays and her levels of engraftment and enzyme redrawn, and perhaps another test I am forgetting. Pray that her engraftment has made it to 100% and her enzyme level has increased!!
Tonight, as Bella and I shared our nightly bag of popcorn (the BIG cheez) I was letting her feed pieces to me, as she gets such a kick out of the role reversal :) Well her sense of humor came out strong as she kept teasing me! She would offer it up to my lips and as soon as I'd open to take it, she'd pull it away quickly and giggle! She thought she was such big stuff teasing Mommy!! It's so amazing that she's only 13 months old!
Everett asked me tonight if I would sell my soul to the devil if it'd make Bella alright. I told him I had thought I'd to anything to make this go away for her, but I know that she's alright where it counts....inside, in her heart. She is so loved by so many people, and she feels that. Her strength comes from the family and friends that are constantly sending their prayers and hearts out to her each night. Thank you all so much!
Friday, September 19, 2003 9:42 PM CDT Day + 56
Bella was so tired today. All day long she was wanting to rest her head on mommy or daddy and take a nap. We are not sure what has gotten in to her lately. I had to wake her up today at eight to give her her morning meds! Ha ha! I got to wake her up! Nothing like a little role reversal to start the day off! We got her up and medicated and out the door to clinic. She was scheduled for nine thirty and we made it there on time give or take a minute. She avoided platlets today, but they are on order for tomorrow. Usually this means that she gets the following day off so we are hoping that she can stay away from Sunday clinic. If you have a few hours to kill you can always do it at the BMT clinic on Sunday! I always make this joke and maybe some people get in and out quickly, but we have yet to make a quick visit on a Sunday. Bella's white count was at 4.8 today! It is a good number consideringt that her meds for her CMV bring it down. She has teeth coming in. It seems like Boo has been teething for six months! I wish that they would just come through so she can feel better. I am sure that she can not wait to try them out on Daddy and Mommy! I am trying to think of the best way to word Bella's recent curiosity. Our lovely daughter has a very strong interest in people's bodies lately. Mainly their nipples. I know that some of you are laughing and some of you are wondering why I am telling you this. It just cracks me up! Just as it did when her brother Brady began to notice how people looked. Anyway she thinks that they do not belong as she tries to remove ours all of the time. This can be both painful and incredibly funny at the same time. Anyway-today at clinic Bella was trying to find Katie's. The look on her face was classic. I felt to bad for her. She was trying to listen to Boo's heart and lungs and Bella was on a mission of discovery! I informed her of what she was doing and Katie just kind of smiled. Katie is our nurse practitioner. She is very cool and has so much energy! It is comforting that she cares so much about Bella! Bella has taken to her and I am sure she understood Bella's curiosity. I guess that is all for today! More of the Bella Boo Show tomorrow!
Thursday, September 18, 2003 9:28 PM CDT Day +55
Isaboo didn't have clinic today, but she did have therapies. Unfortunately, our attempts at getting her to nap beforehand failed miserably, but to our delite, she still cooperated fairly well at all of them. She worked with Reggie on PT, and they played the fun squat, bend over, reach really high game. He made it fun for her by using these suction toys on a mirror so she had to reach or bend to unstick them. She liked it for a long time! Then he brought in a push toy- which she LOVES! She wanted to just keep pacing the room for the rest of the afternoon. Then she worked a bit on OT and we were told that she hasnt lost skills- which is GOOD, and were given some ideas on helping hone hers. After that, she had speech with Andrea and by then she was pretty annoyed with all this 'work'! Andrea sent us packing with a big orange straw to help Bella blow into and learn to form her lips into the 'Ooh' sound. Bella mostly just uses the 'Ahh' right now. (I.E. Mama, Dada, Baba) We are going to work hard with her and hope that she can achieve GREEEAT things!
Tonight we checked out a couple kids books since Bella is getting bored with her same five. Her favorite book is falling apart actually, since she looks at it sooo much! Anyway, I found this book called 'Who's Peeking?' And its animals and it asks 'Who says Moooo?' and etc. Then you pull the page out and "Peekaboo! Im a cow!" She absolutely got a kick out of the book. She would giggle each time and even gave some of the animals kisses. She wanted it read to her over and over and over!! Haha!
Tomorrow we have clinic with Katie and then a nice weekend with no bomb! Keep the prayers coming, so far shes benefitting so much from all of them! Love to all!
Wednesday, September 17, 2003 10:50 PM CDT Day 54
I think that we should start this journal entry off with the funniest Bella moment of the day! She was sitting on the couch with mommy eating grapes. She starts gagging on them so I sit down on the other side of her and we are both checking to make sure she is ok. I put my hand under her mouth and said "give me the grape Boo" Let me tell you that she most certainly gave it to me. Our beautiful little angel puked up the grapes and then some right into my outstretched hand! I laughed of course. Karen on the other hand thought this to be most ammusing! I do not need to tell you how gross it was! Oh the joy of kids. Your clothes are never clean! That was officially the third time this week that Bella has thrown up on daddy. Do you think she is trying to tell me something? We went to clinic today and Bella did not need platlets which meant a quicker trip. There is no such thing as a quick trip to clinic. Her white count has kind of leveled off at around 4.5 since they began treating her CMV. It is still a very healthy level and will come back up when she is done with it. She is becoming a trooper at taking her meds. She takes so many of them. I can not imagine someone trying to make me take over twenty meds a day! The only one that she is not fond of is Penicillin. She absolutely hates it! I have tried it and I do not blame her. I have this thing with trying anything that she is eating or has to take by mouth. I have tried all of her meds that she takes orally. Some are good and some are bad and some are like a relatives cooking. Just grin and bare it! We can finally stop Bella's calorie count sheets! Those dreaded forms in which you must fill out exactly how much your child eats and when they ate it! We kept her off of TPN and now we get to toss the sheets! Oh the excitement you can find that you never imagined! I guess that is all for today! Everyone keep praying for Mighty Max and all of the other kids who need extra prayers and well wishes!
Tuesday, September 16, 2003 3:32 PM CDT Day 53
Sorry for the lapse in entries! Everything has been going so well- we have just been enjoying our time with Bella! She is getting hairer by the second, it seems...and its only a matter of time til shes howling at the moon! J/K!
She didnt have clinic today. Her counts are still good. Her WBC is at 4.9. Yesterday she needed platelets though, she was right on the edge at 43,000. On Thursday she will start up again with her therapies. She will be having physical therapy, occupational therapy, and speech therapy a couple times a week. We feel she is doing wonderfully, all things considered, and hope that this added help will only boost her along! Her CSA dose was changed up again, and she now receives it 3 times a day instead of 2 and its at .7ML instead of .9ML. Today is also her last day for two doses of Gencyclovir (the bomb). Starting tomorrow, for the next 6 weeks, she'll have it once a day and only Mon-Fri. Everett and I are so excited for our weekend. No TPN and now no bomb! YAY! She will be unhooked for two whole days! She is so smiley still! She is just so amazing, it never wears off....our amazement of her. Today she was cruising around with her push toy and trying to watch her video at the same time. She just kept walking in circles. Shes such a goose!
Everett wants to try to go to this volunteer appreciation thing they are holding tonight and some Vikings players will be there. Its about an hour drive though, and goes from 6-8, so I'm not sure if Bella would be up to keeping her mask on that long! Maybe he will just go and fill us all in on the going ons! We'll try to keep this updated daily, but Boo keeps us soooo busy! I guess no news is always good news! God Bless!
Friday, September 12, 2003 10:27 PM CDT Day + 49
The Bella and Daddy show rolls on! It was such a crazy day for the two of us! We started the day off with a tag team match pitting Daddy and the Snot Sucker against Bella Boo and her Boogers! It was a heated battle, but in the end Daddy prevailed and Boo was breathing easier. Once she stopped chewing me out anyway! Our lovely Isabella continued her efforts at taking her clothes off today! It is the second day in a row that she has been fixated with removing them. She has such a look of determination on her face while she is doing it. I can not wait for the day when she finally gets one of them off! We went to clinic again today and all went well. Bella entertained Katie with her "muscles". For those of you that have seen her shake with her fists clenched you will understand. Her cheeks are so chubby from the steroids that they bounce so much when she does it! She will do it on command for Katie. I am not sure which of them enjoys it more? Oh my daughter the princess! She has been such a cuddle bug with me this week! Today she gave me kisses and hugs for a good twenty minutes! I loved every second of it of course! We did have one scary moment today. I had made some ground turkey breast and was feeding her some tiny pieces. She has eaten it a few times before without any problems. I think she was stashing it in the side of her mouth because I kept checking and her mouth looked empty. She has used the stashing trick before so I should have been on to her. Anyway, she starts choking and no sound is coming out and her face is starting to get red. Of course I am calmly "freaking out" as I try to figure out the best way to help her. I know that smacking the back is not recommended and I was hesitant to use any sort of Heimlich (sp) on her because of her line. I know it most likely would not hurt her line but I was in a moment of crisis. I tried to give her the finger sweep and that did not work. Finally I just got her to gag and she threw up all over both of us. I am sure it was not the best way to do things,but she is fine and breathing! I guess that wraps up today! It has been an interesting week thus far. Bella and I strengthened our already unbreakable bond. There is not much in this world better than looking at her big blue eyes and getting a huge Bella smile. I never take one single kiss from that little girl for granted. I soak up every second of every hug. She is my little angel. She has kept me going this week! Bella Boo is a Daddy's girl...sshhhhhhh.....don't tell!
Thursday, September 11, 2003 6:50 PM CDT Day + 48
Boo and I had so much fun today! She is so funny! Her new thing as of late is to grab on to the back of my pants and walk with me. She gets the biggest kick out of it as she looks up at me. She does really well at it and I think that it builds her confidence up to take that first solo step without prompting. That being said-Boo was very close today to walking. We were sitting on the floor playing and she wanted to stand up of course. She was walking along the couch and wanted to get back over to where I was sitting. She looked at me for help and then must have decided that I was going to make her do it herself. She went from crabby to happy and almost took a couple steps in my direction. She started with a full head of steam towards me and then must have realized that she had no hands to help out because she stopped dead in her tracks and leaned back towards the couch. She sort of crashed into it and of course you can imagine the mood that came along with. It was close to her nap time though and that never helps anyone's crabbiness. She also tried to take her clothes off today! I had just got done changing her diaper and doing her steroid cream. I put her shirt and jeans back on and she was laughing at her clothes I guess? She had this determined look on her face and started tugging her shirt upwards with both hands. After a few minutes of this she switched to her jeans and put forth the same effort at getting them off. Sadly she had no luck with the jeans either! It was funny to watch her "yell" at her clothes for not coming off! I have been trying to fill her up with more calories as of late to keep her off TPN and so far she is eating enough to keep off of it at least through the weekend! They said at clinic today that she may be able to come off completely! Rock on Bella Boo! How many calories are in a protein shake? I am just kidding! I won't start her on those until she is at least two! She has become such a cuddle bug with dad this week! I guess now I am good for play and hugs and kisses! Hooray! I can hear her yelling for dad on the baby moniter as I am typing this so I must run up and make things right in the world of Bella!Thanks for your thoughts and prayers!
Tuesday, September 9, 2003 11:04 PM CDT Day +46
Bella had a really good day today! We got some news on her engraftment percentage. It is a bit confusing but evidently it splits into two separate parts. All together her engraftment is M-74% and N-60%! It is up from the last time they checked it which is exactly what we wanted to hear. They will have more results on day 60 so we are hoping that it will continue a steady rise until then! Bella is getting so funny lately! She has figured out that she can be quite mobile when she wants to.Tonight as I was doing her meds she was kicking and rolling over and covering her face up! Laughing the whole time of course! She has such a personality and we can see her mood grow increasingly happier with each day! It is so awesome! It is such a joy to see her filled with more energy and more smiles and more laughter! She didnt' need platlets today which meant a quicker trip to clinic. I am sure that she will need them tomorrow and that translates into a long stay on the 5th floor! Lucky for Boo they have Shasta cola and cheese and crackers! We are doing the short journal entry tonight! Hopefully tomorrow I can write more!
Sunday, September 7, 2003 10:20 PM CDT Day +44
Bella is doing wonderfully again today. She got platelets this morning at clinic. Her WBC is still holding strong at 6.3! She is getting pretty fuzzy from her CSA. It won't be long til we have a regular monkey-girl on our hands! We won't need to buy her a halloween costume! (HAHA) She is still such a cutie though! She enjoyed the company of her Grandma Marilyn, Grandpa Cary, and especially her Big Brother Brady this weekend! He can do just about anything to get a laugh out of her! It's awesome! They all left this afternoon, but we had a nice time while they were visting. Thanks again for coming up guys!
Bella goes to see Dr. Peters tomorrow morning. He is her primary BMT doc. Hopefully he will have some good news regarding an updated engraftment! We found out about her enzyme level as well. As you probably well know, Bella has Hurlers, and thus a missing enzyme. She underwent the bone marrow transplant to right this very thing. So, its crucial she have it now, as she didnt before. Anyway, I guess they don't give out a normal range of what the enzyme level should be, but rather tell you the percentage she has OF normal. Confusing, I know! Bella is at 20% of normal. This is better than her zero she had before, and I'm not certain as to what she needs exactly to function properly, but hopefully this will rise as well! Bella is almost weaned of her Prednisolone (steroid). She has slowly been coming down on her dose the past 3 weeks. This week she gets 1 ML twice a day, and next week, she gets NONE! I hope this transition goes smoothly. I know she wont miss the extra med each day! (she has been doing so well at taking them. She doesnt fight them the way she had *knock on wood*)
Well, we had a very eventful weekend, and I hope that all of yours went as well. Keep praying for Bellaboo, and Max, and all their Hurler friends! Thanks for checking in on us!
Friday, September 5, 2003 9:53 PM CDT Day + 42
Bella had another good day today! We took her to clinic around eleven thinking that she would most likely have to get platlets. As expected her level was low enough to need some and we began the long wait while they were sent down. It took around two hours from the time the called them to get to Boo's room. She take a nap while they were doing their magic and we finally got to leave around two thirty! We made a trip to 4A to visit with the nurses. Bella got to see most of the nurses that were on her team and was very excited! We got to talk with Max's dad Mike for a bit and were excited to hear that Max is improving! Go Max go!
Bella continues to enjoy the company of her big brother Brady. All that kid has to do is make a face and she starts giggling. Her cheeks are so chubby that when she starts laughing she shakes like Santa Claus. She has become our little Jolly Saint Nick! She continues to get hairier by the minute it seems. We knew it was coming though and we know that Boo could care less if she has a little of the European look to her! I am only kidding! My mom and Cary are coming up tonight and I am sure Boo with be very excited to see more visitors in the morning. She loves the attention and definately loves to entertain! I guess that there is not much to report today. Bella's counts were great and she is feeling really good! She had fun with Brady today and we had tons of fun watching them.
We get the day off from clinic tomorrow! Yeah! If only we could talk Boo into sleeping in! Thank you all again for your prayer and support! Bye for now!
Thursday, September 4, 2003 10:54 PM CDT Day +41
While Everett was away, I think I held my own. Only one nervous breakdown...not too shabby!! Just kidding, I did have a hard time last night cuz Bella's line kept backing up when I was trying to switch her from her Genciclovir to her TPN, and I was scared I had done something wrong, but after I just threw it all away and started from scratch, it went in just like it should have! I think there was a hole in the bag or tubing or something. It sucked at the time, but now I laugh at how crazy I was acting!!
Everett brought Brady back up for the weekend, and Bella is excited to see him, to say the least. He had her giggling so hard her whole body was bouncing! It does wonders for her spirits, as well as ours!
We didn't have clinic today (YAY!) But Bella still decided we needed to be up by 6:30am. She and I had a fun time hanging out together. We went for a quick jaunt to the hospital, as Everett had the car and our cash and I ran out of formula!! (AHHH!) So, the nice ppl of 4A loaned us some! THANKS GUYS! Other than that, nothing much happening up here in the big city. hehe Tomorrow we have clinic, and hope to get news back on her enzyme level!! I will be sure to post as soon as we find out though! Everett's mom and her husband are making their way up tomorrow night as well. It will be nice having company again, especially now that we can both spend time with them, as we aren't at the hospital! Keep praying for our baby girl, and Maxx and ALL the wonderful Hurler kids! Goodnight!
Wednesday, September 3, 2003 2:02 PM CDT Day +40
Hello all. Sorry for the missed update yesterday. Everything went well. Her WBC was at 8.2 yesterday and is at 9 today! Her CSA level came back a little low, they like it at 200-300 and hers was 133 or so, and so her Gengraf med will go up to .7 ML twice a day. They'll recheck her level Friday. We also got the bad news that Bella has CMV (?) I believe. When I have more time, I will look up what that stands for for you all, but as explained its a virus that many BTM patients get post transplant. And if her of CMV cells get higher than 1 per 50,000 (of her cells) she would have to go on this medication, well just so happens Bella's level was +2 and so for the next 8 weeks she will be on an introvenous drug. She got it the first time this morning in clinic. I guess its toxic though, much like chemo, but yet not? Figure that out...so anyway, we're to wear gloves, and it will weaken her marrow again and probably bring her counts back down, thus her needing growth factor more frequently while on it. WHAT THE HELL!? I'm so confused, but I got this all this morning in clinic and in my hurry, and just trying to relay it all to ya'll! So, anyway...that is our new challenge I suppose. We'll get by....she's not showing any symptoms of whatever this is she has! And, I'm happy for that, cuz I am told it can cause retinal damage and pnemonia (SP?) Pray for this unknown virus to leave Bellaboo in a hurry, and don't forget to pray for our little buddy MAX!!! Try to update with better info tomorrow!
Monday, September 1, 2003 9:55 PM CDT Day 38
Bella's WBC jumped to 7.2 due to the growth factor she got yesterday. She succombed to a couple naps today, unlike yesterday where she fought sleep all day long and was soooo crabby! Today she was being so cute though! (when she wasn't being naughty!) I was reading her her Baby colors book and she was giving all the babies kisses in the book! It was so darling, and she left slimy kisses on all the pages! She's so sweet! She is getting to be so big, and she walked from our room all the way to the elevator down the hall and back today, holding mommy and daddy's hands. She LOVED it! We will probably be setting up some PT, OT, and speech therapy appointments this week now that we are settled in a bit more. And I hope that she will benefit from the extra help!
Tonight at supper I found a new food favorite of Bella's. She had never had it before, but I was eating parmasean (SP?) cheese on my spaghetti and she was wanting some, so I just put some of the cheese in her mouth and she starting smacking her lips and kept wanting MORE and MORE! She ate tons of the stuff! It was a big mess, but much fun. She had me and her Dad rolling too cuz when I'd take too long getting her more she'd ball her fists and do her shake...and if you've seen it before, you HAVE to see it now that her cheeks are so fat. They jiggle and her face turns a few shades crimson. OH MY! It's hilarious! She keeps us sane by being our little dork! Well, I don't think I have much more to jabber on about, but do remember to leave your comments in Bella's guestbook, as we do love to read them! Please pray for Bella's friend Max, who has Hurlers too and is in the hospital recovering from his transplant. He is having a rough time, and his family needs all your prayers and support. You can leave him an encouraging note as well on his site which is in Bella's links! God Bless and we love you all!!
Sunday, August 31, 2003 10:16 PM CDT Day + 37
Good news everyone! Bella's skin biopsy came back as not being any form of GVH! They think that it is a reaction to one of her many meds. A rash of course is not a good thing, but we are excited that it is not GVH. Bella has been a little crabby lately. Most likely from all of the steroids. She has even resorted to shaking madly during her fits of "roid rage". I think it's cute when her cheeks shake when she is mad and I am sure it only makes her more upset to see me laughing at her. I am not sure if we mentioned in previous journal entries or not but Boo has learned to use sign language a bit. She has been saying "more" for about a month now. It also serves as "mine". One of the speech therapists taught her to use her hands to sign when she wants more. This comes in quite useful when eating popcorn with Mommy! I swear they eat a bag a night! Whatever makes the girl happy I am all for! Bella's ANC count was down today so they had to give her some more growth factor. It is quick and painless though and will help her recovery. Her white counts are back up to 4.1 again and I am sure they will jump a bit by tomorrow. Her sleeping patterns are a bit unpredictable as of late. You just never know what you are going to get with Isabella! She has been cruising all over with us, but she still lacks the confidence to fly solo. She will stand forever until she realizes that she is not being held and then down she goes. She gets scared and I do not blame her. She has been through so much. She is so forgiving though. You can take a chunk out of her foot one second and she will smile at you a minute later. A big chubby cheeked smile! Our Boo is getting chubby! She has already had the expanding stomach for a while now and her cheeks are following close behind. She is still beautiful though and we enjoy every second with her! That is all for today! We have clinic again in the morning and it looks like Boo will need some platlets again. If that is the worst thing that happens tomorrow I will gladly take it! Bye to all and Glod bless!
Saturday, August 30, 2003 9:15 PM CDT Day 36
We found out about Boo's engraftment- FINALLY. As of Day 21, she was 52 ngrafted with the donor cells. They did take more labs to retest though the day we left the hospital, so maybe they think that it will have improved? It's better than nothing, but we really hope to see her 100 ngrafted! She is doing well again today, aside from her steroid crabbiness! She's very tempermental and has constant mood swings throughout the day. She didn't need any blood products today and so our trip to clinic was a quick one and we had a nice time hanging out together at RMH. Daddy grilled chicken outside and Bella and I went out to check up on him. She was impressed by the HUGE caterpillar in the backyard, but I didn't feel comfortable keeping her out very long, sorry BOOBOO!! We are very proud of her progress,and it still gets me all choked up to see how she can still giggle and laugh as though nothing at all has happened to her! She is AMAZING! I only hope to have her heart and spirit rub off on me a teensie bit! Welp, as I get all mushy on ya'll, please pray that Bella's GVH improves and passes without being too problematic, and that her engraftment comes up, and her enzyme level as well!!! THANK YOU ALL!! We appreciate all your kind words, and thanks to Rileys mom for her helpful and thoughtful suggestions as well!! I'm off to watch a movie with Everett while Bella sleeps! YAY! Cuddle time for me!
Friday, August 29, 2003 10:18 PM CDT Day + 35
Oh what a day our Bella had! She slept wonderfully last night. She did not wake up until six this morning! She has had to adjust so many times to sleeping in a new place. We are hoping that she makes a habit of sleeping all night again so that we can do the same. We took Boo to clinic today and her counts are up to 4.1! Hooray for Bells! They are thinking that Bella may be experiencing a little gvh on her legs and tummy. GVH being Graft Versus Host in which her cells are fighting with her donor cells. It is pretty mild hin her case and happens to almost everyone who has been transplanted as she has. They needed to take a biopsy of her skin and we decided that near her foot would be the best bet since she has been know to kick her legs a lot when she is playing. If you have seen Bella at play you have seen the leg kick. She can really Bend it like Beckham! We took her down to have it done and her great mood disappeared as they took a decent sized chunk out of the top of her foot. She cried when they localized it and told the doctor just how much she appreciated her! She was telling her off with her bink in her mouth. She has been doing it for so long and it is still so funny to me! Upon returning from the biopsy we were finally able to get Bella her platelets. They took two and a half hourse to make there way down from the lab. She is on a trend of having to get them every other day. I guess you have to fill up the car to keep it running! We also got some wonderful steroid creme to rub over Boo's rash. We have to wear gloves when applying it but she doesn't seem to mind the massage and the smell is tolerable. I asked Karen if rubbing it on my arms would make them bigger. She just rolled her eyes and gave me the look of "are you serious?" I was kidding of course and merely trying to lighten the mood. I tried out my TPN skills tonight for the first time since taking the class. It makes you a bit nervous to inject saline into your daughter's heart, but we do it because we must. Bella needs it and we do it without hesitation! Who can say no to Bella? We are still enjoying our freedom at RMDH. Bella loves being able to sit on the couch and watch tv or play on the floor with her toys. She has started head butting lately! In a good way though. Ever since she was a baby she has leaned her head into mine. She does not really do it with Karen. We just figured it was her "daddy" thing. Lately she has been leaning in and head butting me repeatedly. It is so funny! I say "BONK" and she will lean in and touch her head to mine. She will do it on command with mommy as well! She is so funny! I guess that is all for today! I just wanted to ask everyone to sneak a prayer in for my brother Ira who had a little surgery done this week. We will have more tomorrow!
Thursday, August 28, 2003 10:42 PM CDT Day 34
Bella's WBC is up to 3.2, and her ANC is a little down, but still at 1.2, so still no growth factor for Boo! She is looking good and everything seems to be going well so far. We are still adjusting to the change and getting used to doing her meds and TPN. But, so far so good! Seeing as how she's doing well, there is not much to report. We have clinic again in the morning, and probably a platelet infusion...updates will still come, but pray they are as uneventful as this one! (At least when it comes to any complications in Bellaboo's recovery!!) Tomorrow marks the start of everyone's 3 day weekend! Have a great Labor Day everyone, keep on praying and God bless you all!
Wednesday, August 27, 2003 10:07 PM CDT Day +33
Our first WHOLE day of 'freedom'! Bella did wonderfully today. The morning began with my first flush after taking Boo off of her TPN from the night. I was nervous to say the least, and somehow Heparin ended up on the ceiling!!! HAHA! It went well otherwise, and tonight I did her TPN and I think I did a good job! She is now sleeping and I hope she does a better job of it tonight. She had a hard time sleeping soundly. I think her little body is so used to being woke up by nurses all night, she now wakes on her own! Its like shes newborn again! Our day was filled with med upon med! We have been giving all her meds orally for awhile, even before discharge, but we never had to draw so many up, as the nurses brought them to us all ready to go! It takes a lot of time out of your day, but is well worth it for Bella's health!
We went to clinic this morning where Boo got platelets (with premeds so no reactions! YAY!) Her ANC was up to 1.7 so they didn't have to give her any growth factor. And her WBC is up to 2.7 I believe, but I dont have the counts in front of me, so don't quote me on that! She seemed to look a little rashy on her legs and tummy and back, but not so much her arms or anywhere else. (mostly her legs/feet) so we are to watch it for any signs its getting worse. Pray it is NOT GVHD!
I have one cutsie Bella faq and then I will sign off for the night! Whenever Bella has her mask on she seems to breath heavier than normal, and we figured it was cuz it gets pretty humid in there breathing in your own hot breath again and again. But, today I discovered that she sticks her tongue out when she has the mask on and licks the inside of it. So, she is breathing and like hum/licking her mask at the same time! It is gross and funny all in one! Well thanks for checking up on Bella, keep her in your prayers!
Tuesday, August 26, 2003 10:28 PM CDT Day + 32
We have great news for everyone! We got to take our Bella Boo out of the hospital today! No fevers or sickness and no looking back! The only way she will have to go back is if she runs a fever or something of that nature. Her mood seemed to improve the farther we got from the hospital. We do think that she will miss all of her nurses and aides. She gets so excited to see them all. She has spent over a month giggling and laughing at them. Doing her best to entertain them even when she felt horrible. At her worst she still attempted to make people smile. I know that she will miss them all. I do hope that she never has to see them in that environment again though. We told them all that she will visit when she has clinic, but that is it. No return visits! If any of Boo's doctors or nurses or aides are reading this-Karen and I just want to thank you all for taking such good care of Bella. This is such a stressful and scary time for us and you have all been great. With us and especially with Bella! We love so much to see her smile at familiar faces and we know that the smiles she receives back are genuine and heartfelt. You guys rock! We do not want to jump the gun and say that Bella will never have to return to the hospital. It seems that most kids spend a day here or there. Some even get all the way home and then have to come back. And some just can't get enough of the place. We just feel that the bulk of her stay is over. We are overjoyed that she is with us in an environment that is more comfortable and like home.
Tonight at RMDH they had a lua. I am pretty sure that I spelled that wrong. They had this crazy guy singing and even cariacatures and hula dancing. It seemed to be a great time! We had to grab some grub and head back to our room as we are still hesitant to expose Boo to too many people-even with her mask on. She did get to hear a little music before we headed up for dinner though. I think she was more interested in the kids. We got a kick out of Grace and Riley dancing in their hula skirts. I got to see a few of the cariacature too. Taylor's was so cute! We missed out on the party ,but we sure are having a great time in our room with Bella! It will take a little getting used to doing the TPN at night. They still feel Bella needs some extra nutrition for the moment. We have to mix it all up and give it to her via her central line. It is a bit of work and a pain in the butt and we hope that she can get rid of it soon enough. Her apppetite is improving daily so she should not have it too much longer. I could go on for hours about how great it is to have Boo with us. I am hoping that she does not have to go back any time soon. Thanks to everyone for reading our journal and signing the guestbook and praying and showing us love and support. Bella has made it over another hurdle! She is a rock star!
Monday, August 25, 2003 9:15 PM CDT Day +31
Bella's WBC is at 1.7 today, so it moved up a smidge. Better than it going back down, eh? We took her out on pass again this afternoon. She is definately ready for the increased freedom of RMH. She's accepting of having to go back to the hospital, but she is in such a great mood when she's with us at RMH!
Bella gave me a scare today while she was getting platelets. She had already received her RBC infusion and I was feeding her some chicken babyfood while her platelets started up, and she started pulling her ears mercilessly. This didn't seem that odd to me, as she has been messing with them since her tubes were placed over a month ago. But when I'd pulled her hands away and said no, she wouldnt or COULDNT stop. She started fussing and trying to pull at her line, her chest in general really. The resident then came in and I told him to turn the bright lights on so he could check her better and lo and behold but did Bella ever have some bad HIVES all over her little body! Her skin was beat red and she had huge raised white welts all over. She was freaking out, trying to tear her flesh off, it seemed. So, the doc ordered benedryl and hydrocortizone right away. She was much more comfortable after that, and the hives disappeared in a matter of ten minutes or so. From now on they will be pre-medicating her with tylenol and benedryl everytime she gets blood products. They used to, so I dont know why it had changed??That was about enough excitement for one day. I'm glad she's in such good shape though. Her spirits remain high, and I hope her counts can rise to the occasion as well!!
I wanted to just let everyone who prayed for Bella's little neighbor to know, that late last night, well early this morning rather, she passed away. She went to heaven to live. Thank you for your prayers though, and keep them coming for her mother and family. If you would like to offer your condolences or any kind words, her website is:
www.caringbridge.org/mn/priyanka
Prayer keeps us full of hope and promise. Every one counts. Keep praying for Bellaboo and her strong recovery to continue! Thank you all, and God bless!
Sunday, August 24, 2003 11:53 PM CDT Day +30
Bella's WBC is dropping. Yesterday it was at 2.2 and today it's down to 1.6! I'm hoping it will stop declining and start going back up. It's because they stopped giving her the double dose of G-CSF, so pray that she can grow some cells on her own! We took Bella to RMH again tonight. She even took a decent nap in her crib there. I hope that the transition will be smoother since we are able to somewhat introduce the new place to her and it won't be such a drastic change. She is so cute when we get ready to go out of the room, she gets wiggly and excited at the sight of her mask. She has associated it with good things, and I'm so glad its not a fight each time we need it on. It's the little things like that we are sooo thankful for.
Tonight the electricity went out in the hospital. Thankfully each room has one generator that kicks on and so we weren't left in the complete and utter blackness. Not so lucky were others who had to be on vents. They needed manual pumping until they could restore power, which took a few hours. I'm really worried about Bella's neighbor and her family. I am not certain of their situation, as I'm not one to ask questions and seem rude, but I know that she has been having complications, and her mother was talking to the doc in the hall pretty upset. Please pray for the little girl and her family. Pray for all the children in this hospital!
Thank you God, and all his angels (everyone reading this and praying for my baby) for watching over Bella and holding her precious hand through this whole ordeal!
Saturday, August 23, 2003 10:46 PM CDT Day + 29
Bella had so much fun today! We got to take her out of the hospital today and over to the Ronald McDonald House for a few hours. We put on her 'going home' outfit and strapped her into her stroller. With her mask on you can hardly see her eyes when she smiles. I never thought that a child that small would look forward to wearing a hospital mask. Boo is so smart! She realizes that the mask stands for a freedom of sorts. It was so awesome to have her in her stroller and headed towards "home". We felt like we were pushing Michael Jackson's baby around. Bella had her mask on and her strawberry hat pulled down to shield the sun. You could barely see her eyes. Once we got there Boo made herself at home and it was as if her mood increased ten fold. She got to play with some of her toys and ate popcorn with Mommy. That girl can put away some popcorn. Must be the steroids! It was nice to sit and eat as a family again in a non hospital setting. I cooked for Karen and I and Bells had some peas. We all sat at the kitchen table and seemed to forget all of life's worries for the moment. It is strange how you take for granted the simple things in this life. You always assume that there will be more opportunities to sit down with your family. More chances at catching up with your brother or an old friend. I have learned so many things from my daughter this past year. One of the lessons that I have learned is to stop and enjoy life. I was so sure that I was absorbing all of my life's greatest moments. I was wrong. I see one of life's greatest moments every time my daughter and son smile at me. It looks like we will be able to bring Boo with us to the house tomorrow for a few hours again. We are excited as it will help us get through her seventy two hour wating period until her next scheduled departure. I am beginning to think that we are jinxing it by talking about it. We decided that maybe we should tell people after she gets out! Thanks for reading my ramblings and God bless!
Friday, August 22, 2003 10:19 PM CDT Day +28
"SIGH" Today started so wonderfully, and ended on a sour note. Don't start getting worried, Bella is fine.
Bella kept up her good spirits today, and we made a couple trips in the halls. When I was out with her one of the times, over in 4B, there were 3 kids and presumably their dad washing their hands, and when Bella caught sight of the children, she squealed in delight, kicking her legs, and giggling out loud! She loves other kids, and I can't wait til she's well enough to play with them again!
I got the room all cleaned up for Bella's arrival tomorrow..but sadly, it looks as though it will be postponed, yet again. See, it goes like this. Bella's temperature has been monitered and they took cultures ever since last Tuesday she had a temp of 100.8. She was fever-free since, until the aide came in at 9PM to take her last vitals, and her temp was at 101! We didnt believe the reading cuz she didn't even feel warm, so we asked her to come back in 20 minutes and try again. Maybe it was cuz Bella was so excited eating her popcorn and drinking cherry coke (hehe) So, she obliged and came back, getting the same results. For some reason Bella's body waited til we were 12 hours away from being released to heat up. We are trying to be positive still, although we are so disappointed. She is looking so good and showing no other signs of any discomfort. She has a cough still and a runny nose, but that's no change from weeks ago. Her WBC was at 4.5 today, and things were looking sooo good! They will come draw more cultures tonight and they will be watched for the NEXT 72 hours. We're trying to look at it like this: it's giving her 3 more days to eat well and a better chance at being sent home TPN free, its giving us 3 more days of preperation as far as drawing up meds, learning TPN (IF) she's sent home on it, and learning to get her line flushed and cleaned. Perhaps Bella knows we aren't ready. At least we know her body isnt. So, it is better we are in the same room, instead of taking her out only to return a day later to a different room, possibly on a different floor, and further add stress and confusion to the precious girl's life! We have decided we won't announce our leaving until we are OUT! We are jynxing it!
On a side note, the doc that tried to get Bella under for her CT scan seemingly so long ago, told Everett tonight that she had looked up the side effects of Verset(SP?) and one was the hiccups! And if all of you recall, our Bella in her drunken state, had them! HAHA Gave us a chuckle!
Well, keep praying for Bella, and her mysterious fevers to resolve themselves!
Thursday, August 21, 2003 8:44 PM CDT Day +27
I couldn't have asked for a better day! Bella's WBC is up to 4.3 and tomorrow they will back down on the G-CSF. Her counts will probably drop a bit, but hopefully not too drastically. Bella was relatively amiable throughout the day. She had physical therapy this morning, and occupational therapy this afternoon. The OT informed me that Bella is a couple months behind on some of her skills, but with Hurlers, and the fact that she's been in the hospital this long, that is not unexpected. And they are very satisfied with where she's at! We hope that once she's out we can work really hard with her to catch her up! When Daddy got back around supper time, we took Bella out in the hallway for a wagon ride- her first EVER! She loved it! She was giggling and between the mask squashing her face and her huge smile, her eyes were barely there! It was so precious! Then we took her to the sunroom so she could look at all the trees outside. (our room's veiw is the next building over, so she hasn't seen one in over a month!) She started wiggling in excitment, and we decided we HAD to get her outside! So, we waited for Laura to get done with her shift, and she came with us to take a snapshot of mommy and boo swinging. She just loved it, and so did we! She is fast asleep now, and I hope she is having pleasant dreams of her adventure tonight!
Tomorrow afternoon I have line care and TPN class, and hopefully we will be free to go Saturday morning! I'm filled with excitement, and terror at the same time. I know we have all the prayers and support of family, dear friends, and those that care and we don't even know. And, for that, THANK YOU SO MUCH!!! God bless you all!
Wednesday, August 20, 2003 9:49 PM CDT Day +26
HELLO EVERYONE! I have not done the journal in forever! Everett has taken over wonderfully, as he did while I was back in Iowa. I had a good break, but missed Belloboo tremendously, and am sooo happy to come back to her doing so well! The phone call about her line came as quite a shock though, let me tell you! But, today she has not had any fevers, and her WBC is up to 3.2!! Everett left this afternoon to take my sister, Halle, and Brady back home. They both start school in the morning. Halle, thank you for coming and visiting us! Bella loved seeing your great smile! And, of course Brady, Bella's favorite big brother, she will miss you every day until you come back again! I took boo out to the hallway for a meander tonight. I sat her on her bed and got her mask and she got all excited upon seeing it. She KNOWS that it means she gets to leave her 'prison', I think! That girl amazes me more each day! She's sleeping soundly now, after taking TONS of meds, with little complaint. Thanks due to the balloons scattered about her ceiling! Well, considering she's doing so well, there's not much news! Keep praying, it's working! We appreciate everyone's support!
Wednesday, August 20, 2003 10:08 AM CDT Day 25
What a crazy day we had! Bella had to have her central line replaced today. We had to cut her off from eating anything before seven. We got her down to the third floor around ten and they made us wait until twelve thirty before they could do her procedure. Evidently they needed her to not eat for six hours preceding the operation. We had no idea when they were going to get to her so we did not want to starve her too long. So after waiting they finally told us that one of us could put on a mask,etc. and stay with her until she fell asleep. We had planned on this happening , but when we started towards the hallway the nurse? took her and said we could not go any farther. We had to watch a crying Bella looking at us as she got farther and farther down the hallway. It sucked! We were both upset that we had been misinformed. It is a hard enough experience. We highly recommend having them sedate the child before taking them from you. Boo's recovery went very well. She was groggy, but not crabby. When we got back to the room she had so many meds to take. She had been gone so long from the room that they had started to stockpile. We got most of them in her before she went to bed and snuck a couple in while she was sleeping. The worst part of our day was that we had been told that Bella could finally get to go to the Ronald McDonald House with us on Wednesday. We were excited at Boo's potential freedom. However, she started running a fever at around eight and it was high enough to warrant a three day stay. So now our Boo has to stay until Friday. They think that the fever is attributed to the operation. I know it will pass soon and that Friday will be here before we know it!
Monday, August 18, 2003 10:50 PM CDT Day + 24
What a crazy day we had! Bella woke up in another great mood today. The usual smiling, giggling, and shaking of the crib. I think she expends more energy in the first half hour of being awake than most people do all day! Her counts continued to leap today and are now up to 1.9! This is so awesome and a great way to start the day. They had been talking about letting us out of the hospital by the end of the week, but Boo is doing so well that they decided that if she did well over night they could let her out tomorrow! I was so excited and scared at the same time. You wait and wait for this day to come and then you start stressing at the thought of being in a non hospital environment. We decided that if they let us out we are going! As fast as we can to the Ronald McDonald House and locking the door! I am just kidding of course, but what a thrill to bring her to a more home like environment where she is not beeping constantly and has room to play and look outside and actually "go" outside! I was so teary eyed today thinking of how strong she has been through this all and how far she has come to make it to leaving the hospital. She was smiles all day and I loved every one! Around four thirty this afternoon I was giving Bella one of her medicines and the nurse had put chocolate sauce in it to enhance the taste a bit. Of course some of it got on her shirt and she needed to be changed. After getting her top off I noticed the black stitches from her central line were lower on the line. At first I thought they came off and slid down, but after close examination I realized that she had somehow pulled her line out. Not all the way, but very close. I was a bit nervous and tried to keep her still until our nurse arrived. She was not bleeding all over so I was not stressing too badly. It was scary, but not too scary if that makes any kind of sense. They took an x-ray to see how much of the line was still inside her and determined that she did not have enough left to help them put a new one in. If it is in far enough they can retrace the path of the old one with the new one. They discovered that she only had about a centimeter left to pull out and it needed to be pulled out. It was such a look of freedom when they pulled that line out of her. She has been trying for weeks now to get it out and she finally did it. "Hooray for Bella" and "You are naughty" all rolled up into one. They informed me that she would have to get a new one put in tomorrow. Which means she will have to go under via "happy air". We are not looking forward to that part of it. Bella was not plugged into anything when I left tonight and she won't be until they get her fixed tomorrow! It was so awesome to pick her up and twirl her around without those damn lines attached to her! We took full advantage of it! We put a mask on her and went for the long awaited trip into the hallway. There was no way Bella was going to complain about wearing a mask when she was not plugged in and roaming the hallways. She was smiling at everyone and her eyes were examining everything so carefully. I was overjoyed for her. And was holding back enough tears for us all. Bella did it! She made it to the hallway! We wandered around for a bit and made our victory laps before returning to the room. Mommy got home just in time to give Bella a ton of meds which had to suck for her. I am hoping that they enjoy some quality time tonight and maybe even get to cuddle in bed. It is one night only of no central line and no beeps in the night. I am excited for them both. Wish Boo luck with her procedure tomorrow everyone!
Sunday, August 17, 2003 7:55 PM CDT Day + 23
It is always nice to have Bella wake up in a great mood. Today she did not let anyone down as she was giggling and smiling at nurses and aides. Laura is her primary nurse and I think that Bella misses her when she is not working. She seems to be growing fond of her and was happy to see her this morning. We got her count sheet today and I could not believe it-Boo's counts had jumped up to 1.5! I was so excited. It looks as if Bella is going to get her trip into the hallway tomorrow! Yeah Bella Boo! The best part of our day had to be the buzz going around about when Bella might get to leave the hospital and head over to the Ronald McDonald House. After wondering if it might be true the doctors finally came in during their rounds. They said that if all keeps going well Bella could get out of the hospital by the end of the week! I am still smiling from hearing it. I hope and pray that all goes as planned and she continues to grow more cells. They are also going to check her for the enzyme that she is missing sometime in the next couple of days. They want to see if the cells in her body have the enzyme that she was lacking because of MPS. Again we are hoping and praying that she now has this enzyme that she was in such need of. Bella was her normal self today. We took turns making each other laugh and had a great day all around. I am so excited for Boo's trip tomorrow!
Saturday, August 16, 2003 5:07 PM CDT Day + 22
We got the best news this morning! After waking up in a great mood Laura told us that Bella's white blood cell count was up to 1.0 or 1000!! What a huge jump for yesterday's .4! Her Neutrophils are at 500 which means that if they stay at 500 or increase for three days straight she can venture out into the hallway for a bit! How exciting would it be to get to leave her room for something other than an x-ray or attempted CT scan. Everyone cross your fingers for a "hall pass" for Boo! Bells and I are having so much fun today! She has all of these new toys to play with and the most entertaining thing she could find were two hospital drinking cups. We used them as a megaphone and eyeglasses and funny looking ears. I was hiding Boo's binky under a cup and then moving them around to see if she could follow it. After a couple of wrong guesses she picked both cups up at the same time. She is such a smart girl! We also enjoyed a nice game of play with Daddy's sunglasses. This consisted of Bella trying them on and giggling and then attempting to put them on me. She is so amazed at how dark everything gets when you put them on and apparently I must be pretty funny looking in them as she laughs every time I put them on. Maybe I am just funny looking to her? Bella is doing so awesome with her oral meds today. I think that so far I have given her seven or eight today. The best approach seems to be to give her a little at a time while she has her bink. It takes a while this way, but we see less of it returned to us this way. What I am about to tell you next might be the funniest thing that Isabella has ever done in her whole life! I had just changed her diaper and she was standing up along the rail of her crib. I had her singing Tigger and Roo going and I was singing along. Bella starts dancing to the music and her diaper falls down around her ankles. I guess I did not get it quite as secure as I had thought. She is grinning ear to ear and dancing and her diaper is at her feet! I was in tears! She must have caught a draft (or maybe it was her Lasix) but Boo starts peeeing with no diaper on. I mean it was on, but it was not in a position to do any good. What a mess to clean up and what a memory that I will keep my whole life any time I need a laugh!
Friday, August 15, 2003 10:36 PM CDT Day + 21
Happy Birthday Bella Boo and Big Brother Brady! We had a birthday party for the kids in Bella's room today. I had baked the cakes last night while Karen was on night duty. We waited until this morning to decorate them and I think we did a really good job. Bella was not all that interested in eating cake. We had agreed to let her make a mess if she so desired. She elected to pick up a small handful of frosting and call it a day. We got off very easy as far as first birthday messes go. We decided that we will let her make as big of a mess as she chooses next year. Brady is past the age of making a mess out of his cake yet he still did a fine job!They both liked their gifts although Boo was more interested in the wrapping paper. Go figure! She got a gift from the hospital too and Max's family gave her an Elmo piano. Just so you know I found the volume switch! LOL! I think that all things considered it was a great day all around. We have learned so many things from Bella in the last year. One of them is to make the best out of your given situation. Our first choice for a party site would not be a hospital room of course, but I feel we had all the right ingredients. Love, laughter, and family. On a more technical side Bella's counts took a dip today. They tell us that this is pretty standard with cord blood before the cells start to make their surge. She was at .4 today. The resident told us that she could be at .498 for all we know. So she may not be that far off of yesterday. We do know that she is getting closer to her old self with each passing day. Tonight I was blowing farts on her stomach and she was laughing so hard you couldn't see her eyes. Her cheeks are so chubby that her eyes disappear when she smiles huge or laughs hard. If she could only know the joy she provides. I was watching her sleep earlier and recalling the past year in my head. The first year of her life. I am in awe of the strength and courage that a child can show. To take all of those meds and survive chemo and fevers and x-rays,etc. She is a light in the dark, an angel, she is golden. Isabella Faith you are my hero!
Thursday, August 14, 2003 11:17 PM CDT Day +20
Hey all you Bella fans!
She had another good day, as I know you are all anxious to hear! She had a bit of a temp, but it passed with some tylenol. Her WBC did make it up to .5, so she once again avoided getting that G-CSF doubled. She has the challenge once again though...C'mon Bella! Keep growing those cells!
Tomorrow is Boo's first birthday! It is also her big brother, Brady's 5th birthday! We are having our own little celebration in the hospital room (of course)! We are gonna play pin the tail on the donkey and have cake (that Daddy is making tonight)and we got Bella a big plastic tablecover that we'll lay out for her to eat her first cake all her own! I'm sooo excited! I'm glad she's still eating enough to enjoy it! We are sad that their birthdays have to be here, but we're also trying to make the best of it. It will certainly be memorable! There's not much to report once again, just that we are so proud and so happy with her progress! Just keep praying her cells will start coming in quick! If she gets 3 consecutive days of her ANC being at .5, she can get a hall pass and GET OUT OF THIS ROOM! She, of course, will need to learn to put up with a mask, but at least she will see there still is a big world outside this room! I'm sure there will be a wonderful journal of our fun happenings tomorrow, so check back! God Bless!
Wednesday, August 13, 2003 10:42 PM CDT Day + 19
Bella was in a really good mood for most of the day. She did have moments of crabbiness with mommy tonight and they gave her a little morphine to help her out. For as great of a mood as she is in we can still tell that she is not quite back to her old ways. Although she is very ornery when it comes to playing with her central line. She knows what "no" means now and she plays with it even more when you tell her to stop. The jury is still out on who she inherited her naughtiness from. Her white blood count went back up today and she avoided having her Gcsf doubled. It has to go up tomorrow and continue to go up or she will have to have it kick started by doubling it. I took Brady to the Mall of America today. I promised him he could go see Sponge Bob's Underwater Adventure! We stoppped at Camp Snoopy first for a "log ride". I think we waited in line three ten times as long as the ride lasted. Brady had a lot of fun and was clinging to dad for dear life as we went down the last hill and splashed down. We both got a bit wet and had some laughs. We then moved on to a ghost shooting game in which you ride through this haunted house and shoot the ghost when the pop up using a sort of laser tag gun. Brady was jumping every time one of them came up. I on the other hand felt like I was in the middle of a Scooby Doo episode. We moved on to see the sharks and sting rays at Underwater world. After paying an arm and a leg to get in we finally made it down to the petting zoo of the sea. Brady had no problem touching the starfish and they felt as you would expect them to. Kind of squishy yet a little coarse. We got to the tank that the rays and small sharks were in. I am not sure what kind of sharks they were, but I am sure they are not capable of doing much damage. We had fun petting the stingrays and they seemed to like the attention as they would float near the surface and slow down so we could reach. It was pretty cool and Brady liked it a lot although he was a bit afraid of them. He refused to touch a shark and I decided to demonstrate proper shark touching technique. I have seen a shark close up in the ocean so I figured this tiny shark could cause no problems. So I stick my hand down in the water and as I am about to touch the shark's back he turns and snaps at me. Of course I yank my hand out of the water and proceed to douse myself with water. Brady is laughing at me as I look like I have just peeed my pants. I cursed the shark under my breath and then laughed right along with him. I had to walk through the mall with wet pants though,which I am sure some mall wanderers found quite amusing. Bella was a freak tonight. She decided that nine thirty was a great time to start laughing and yelling and playing hide and seek with herself. She finally went to sleep around ten thirty despite my best efforts to wear her out before then. Everyone pray for higher counts tomorrow! Grow cells grow!
Tuesday, August 12, 2003 8:46 PM CDT Day + 18
Bella was in a great mood again today! Her white blood cell count was down to 300 today. If it does not come up by tomorrow they are going to double her growth factor (G-CSF) to help her cells grow at a faster pace. We had so much fun today watching Bella and her new found love. Ranch dressing!!! It is hilarious. We were feeding it to her on a cucumber today and right out of the package as well. She was inhaling it. It seems that kids who are sick become fond of certain foods-well Boo has definately found hers! Snoopy stopped by the hospital today. Bella was fresh from the bath and got to peek at him. He could not come in the room and Boo of course can not leave it. She seemed intrigued,yet unexcited by a giant dog with a Hawaiin shirt on. Maybe she thought Grandpa Grumpy was the only big guy who wears shirts like that? Brady got to go out in the hall and shake hands and grab a quick picture with Snoopy. He also got a free hat! So far this week he has gotten to meet Ronald McDonald and Snoopy. He remains unsure if it was actually the "real" Snoopy and Ronald. Bella went without any Morphine today. It was the first day in a week or so that she has not needed any for discomfort. She has a streak going of either pooping or peeing on mom and dad this week. She has gotten one or both of us every day for the past three days. It does not help that they give her Lasix to help her shed some of the water weight. Keep praying for those counts to go up! And don't forget to sign her guestbook!
Monday, August 11, 2003 5:23 PM CDT Day 17
Sorry we didn't journal yesterday; the server was down here at the hospital, I really did try to update for you all! Anyway! This morning I woke to little girl giggles and Laura and our aide laughing. Bella was in such a good mood, and all the while they were taking vitals! It was a wonderful thing to wake up to!
Today her WBC is back up to 0.4 (approx. 400), which is a big sigh of relief! Pray they keep climbing! Isabella's mood has been sooo much better these past couple days. We see more and more of her bright personality shining through all this yuck! When she smiles its like her eyes are squished shut cuz her cheeks are SOOO chubby! It's so darn cute! Still no fever, lungs sounding clear. She still has a runny nose and is rather congested, but thankfully its just a head cold and hasn't effected her lungs! They don't want to put her on anything for the congestion because the medication has the side effect of high blood pressure, and God knows she doesn't need any help with that! So, hopefully she will grow some more cells that can combat this pesky bug!
Today we ventured out, having a care partner stay with Boo for a couple hours, and Everett and I took Brady to Target. It is Bella AND Brady's birthday in only a few days (August 15) and we hadn't the chance to get their gifts. It was pretty tough sneaking things for Brady into the cart, but we pulled it off like old pros! I get so excited about giving gifts I can never wait! I want to give them as soon as I have them, so waiting til the last minute is always a good idea for me! For Father's Day the only thing Everett had left to open was his card, and only because he told me he had to save SOMETHING for the actual day!! Everett is the same way though, he gave me my Mother's day present at midnight. We are such dorks! Well, anyway....I wrapped the gifts all up and they are waiting much more patiently than me, over at RMH. We plan to get Bella a small first year cake that she can make a huge mess with it all on her own! Don't worry we'll tape it so everyone can see! I was told as well, that usually day 21 is when they'll take her first bone marrow biopsy to see how well she's engrafting (IF?) and how many are her old cells, and how many are the donor cells. So, that will be quite the birthday treat. How do they take a biopsy of your marrow? I hope it won't hurt her!! Not on her birthday! Nothing much more to report at this time! Keep praying! I see it working each day as she gets stronger! Love you all! God bless!
Saturday, August 9, 2003 8:11 PM CDT Day + 15
Bella's WBC is back down to .2, which seems odd to us, but we are told by the doctors that at this point is very normal with cord blood. They usually see it go up and down a bit, before starting to steadily climb. If in a week, they are still not rising consistently, then there is reason to worry. So, hopefully tomorrow we'll be going up again! Her fever was still absent today. YAY! And the doctor decided not to reschedule the CT. He was frusterated with anestesia yesterday as well, and since her fevers have gone away, he doesn't see much need for the scan anymore. If she does have the return of persistant fevers , however, they will want to do one, of course. Bella's mood has been crazy lately. She definately has the steroid mood swing down pat. She will be smiling and giggling one minute and screaming, mad as hell the next. For the most part though, she seems to be improving. She has more interest in playing than she has the past week, and she is eating better. She never stopped eating completely, and no mouth sores are visible. So props for mouth care! She is still on TPN and lipids since she isn't eating enough, but we're just so thankful shes not refusing food completely! Brady has been a mood booster to Boo as well. Whenever she catches sight of her big brother, a huge grin lights up her chubby face! Her blood pressure has continued to be high, and is probably a result of her hightened doses of methylpred. But, with that dose coming down, hopefully she wont need so much blood pressure meds either! We are really optimistic for the future, and hope its all on the up and up from here on out! One day at a time, though.... Keep on praying, thanks to all!
Friday, August 8, 2003 7:56 PM CDT Day 14
We tried to do Bella's CT scan again this morning. I took her down to the third floor to get prepped for it and Bella enjoyed a few minutes of Baby Einstein before taking a nap on Daddy's shoulder. After about an hour of waiting they informed us that Bella needed platlets before they could do the CT because of how low hers were and the risk that accompanied. Her platelets came up in two seperate batches, because they didn't have enough of her blood type at the blood bank. So, it took too long and the CT was cancelled...AGAIN!
Grumpy, Ira and Marcy, Bart and Jen all departed early this morning. We'd like to thank them for coming and spending a couple days with us! Brady especially had fun. Jen and Marcy took Brady to play bingo at RMH last night. They all won some cool prizes!! Jen's mom made Bella a beautiful blanket. And we would like to thank her! Marcy and Ira also brought Boo a gift-a singing Tiger and Roo that sings a very infectious tune! Grandpa Grumpy stayed with Bella a little while as she slept last night, so mom and dad could get some much needed alone time for a couple hours.
Today, Bella seems to be in good spirits, a little crabby this morning due to being forced to fast for no reason again, but progressively her mood improved. Her highest temp today was 99.9. Pray that the fevers stay away!!
We are satisfied with our baby's progress, and are anxious to see those counts start to rise!! Pray for Bella and those cells, and keep checking back for more updates!
Love you all! Thanks for supporting us and our daughter during this rough time!
*We promise this is our last move til we come home! We are now in room #434 at RMH and our new phone number is (619)379-2955. This is a much bigger room, and gives us lots of space, making our LOOONG stay a bit more comfortable and homey! Sorry for all the confusion!!*
Wednesday, August 6, 2003 11:38 PM CDT *Update for today's entry*
I added new pictures, they are blurry cuz Bella's on the move, but you can see her baldness, so its good enough for now, and all I can pull off!
Alright, as far as the CT went tonight...well, it didnt.
They gave her an intrevenous sedative this time, and I'm horrible with all the names of these medicines she gets, so forgive me if it's escaped me, but anyway, the doctor comes down with us to the room, cuz it's late and she doesn't want to take any chances with Bella ending up in PICU for stopping breathing or something crazy. And she puts the O2 sat on and brings the drug that will counteract the sedative IN CASE anything should happen. So, with all these scary precautions, I'm getting nervous! They start Bella off with the lowest amount, .5 MG I believe, and it seems to do absolutely nothing. So, they give her the rest. The drug's effect was suppose to show up in 1-5 minutes. Nothing. So we wait 20 minutes. She starts to seem a little sleepy, nothing significant. Then she gets the hiccups. So, the doc tries to see if she can get 1MG more, but the PICU doctors dont feel comfortable with it at that hour. So, we get shuffled to another room so they can still use the CT scan for others while we wait for Bella to give in! Well Boo was LOVING the effects of the drug, and not going to sleep. She was smiling at everyone, smacking her lips, waving, even clapping at nothing! It was so funny. We couldn't help but love the cute show she put on. With her last few days being feverish and crabby, it was a nice change. Long, long story a little shorter, we waited well over the max effect time of the drug, and it seemed to not have that much of an effect on our strong-willed little one. She came back to the room and sucked down a bunch of formula and fought sleep awhile longer even! If it's anything that's working in her favor, its her stubborness!
Tomorrow we contemplate having to have her go under anestesia(sp?) just so this can be done! Well, this has been quite a day, and I should wrap up my ramblings! Goodnight!
Wednesday, August 6, 2003 6:51 PM CDT Day + 12
Hey All!
Bella has been up and down today. Her white blood count went from 0.2 yesterday to 0.4 today, and the doc thinks her fevers could be engraftment syndrome. Bella started showing rashy signs last night as well, and it was questioned whether it was from her being off meds (while she had her line fixed) or now, since she's still rashy, if its also conclusive of engraftment! Bella had a rough start today, she puked up her oral meds twice (both times Daddy had given them, so now mom has sole med giving responsiblities! *wink) and soiled them another two times out her other end! She had a pretty nice bath, though, considering she hasn't really liked taking them since she's been in the hospital.
She missed her ENT appointment this morning. It was scheduled for them to check the tubes she had placed when she got her central line. But there was some miscommunication, as we thought they were coming up to see her, and they thought we were coming to the clinic. We will have to reschedule for a time when she's feeling better if that's the case.
The doctors wanted a CT of her chest for a closer look at what's going on in there. She still sounds clear, they just want to be safe to catch anything the xrays might've missed. She also woke today with a puffy left eyelid, (which, coincidentally, had been the same eyelid to have a big hive during ATG) and so they also want to scan her head to check that area for infection. So, at quarter to four Miss Boo got some chloral hydrate, which she's had before and it worked well for us. We were escorted down to radiology, Bella zonked on my lap. But, when I layed her down, she woke VERY upset. She wanted to sleep on her side, like she always does, but the lab technicians needed her flat on her back, completely still, for the scan to be conclusive and accurate. So, he wanted her to have something else to make her sleepy. Laura (Bella's nurse who was with us) ran back up to see what she could do. The doc said try Benedryl, otherwise use a papoose. (NO!) So, with two more failed attempts at getting her to lie on her back and be still (she would fall back to sleep on my shoulder, but as soon as she needed to lie flat, she'd wake up screaming) they asked if we could come back tonight because they had others to get to. BIG 'sigh'! What a waste of time, and now Bella is asleep from all that medication!
The doctors upped her methylpred to help with her rash and also her lasix(SP?) since she has gained a significant amount of water weight. She's finally my chubby baby!! SOOO CUTE!
Everett's family is here for a visit, and he and Brady are over at RMH making supper with them. Brady loves all the extra attention, and there's always someone to play with.
Keep praying for Bella's white count to go up! Her being at .4 means that she has roughly 400 white blood cells. She has a long way to go,but we all know she can do it!Keep your positive thoughts coming!
Tuesday, August 5, 2003 12:00 AM CDT Day + 11
Bella still has a fever. It is not quite as high as it has been though and she was feeling well enough to play with Brady for a bit this morning. She has started to shaker her head "no" at the doctors and nurses when they come near. It is too funny! She had chest x-rays done today and they were clear. If her fever continues tomorrow they are going to do a CT scan to ensure that nothing crazy is going on in her lungs. Bella continues to look more and more like Buddha every day. We are not sure if it is the drugs or what, but that girl's tummy pokes out considerably. She is almost ready for the next size of pajamas! On Bella though it is cute! Her white blood count went up today! Not much,but we are excited to see it start moving upwards!They put her on a morphine drip last night to help with the fever discomfort. It makes her a bit sleepy,but unfortunately for mom it did not help her sleep through the night. I imagine that when you sleep all day you have to stay up and play sometime! As I write this Bella has been sleeping for and hour and a half. Looks like Dad might be in for a similar night tonight! Hopefully her fever will continue to go down and she will be feeling much better sooo!We will keep everyone updated.
Sunday, August 3, 2003 10:12 PM CDT Bella's fever carried over from last night. She was feeling pretty miserable for most of the day. They kept her oxygen mask flowing next to her throughout the day and it is currently still by her side as she sleeps. I am not sure she really needs it as her oxygen levels improved as the day progressed. Brady hung out in the room with us today. He is still a little confused by it all. Last night he asked "if we could just take Bella home with us to Ronald McDonald's House". On a side note,Brady also informed me that he speaks "fish". So if you ever have any problems communicating with your friends in the water let him now. Boo continued with morphine and tylenol today to help with her fever and the discomfort that comes with it. At one point she felt well enough to stand up in her crib and eat some strawberry sherbert. It brought a smile of relief to our faces as she smiled and danced a little bit. She is far from up to par,but we will take it! We think her eyebrows are starting to fall out. Bells has plenty to spare though and like her hair they will grow back. We changed Bella's pictures. They are not new, but we hope they will suffice until we can get current pictures on here.
Saturday, August 2, 2003 11:11 PM CDT Day + 8
Supposedly all good things come to an end. We like to think of this as a challenge. Bella came down with a fever today and was cranky, pulling at her ears and head. She has been doing this more and more the last few days, and the doctors think it could be mucousitis (sores)starting in her throat. So, they gave her tylenol for the fever and a small dose of morphine to help with her pain. She was completely uninterested in eating for much of the day, but the morphine seemed to help a bit, and she drank a few bottles. I made another trip to xray with her, to rule out happenings in her little lungs, good news being that they looked good, confusing though, is still the culprit of her fever. They took blood cultures earlier today, and hopefully we will have some more answers tomorrow. Pray that this is not an infection and passes uneventfully! She is sleeping now, having been given more tylenol for her temp(101.6)and I hope she will not need any more pain medication and will be able to sleep well tonight.
Everett got back about 8 or so tonight, and had Brady with him. Brady is really excited about staying at the Ronald McDonald House. He thinks the spiderman and Mike Wazowski statues are cool. He told me that they used to be real and now they are stuffed! He's a little taxidermist all of a sudden! He was galloping all the way to the hospital, so happy that he was going to see Bella FINALLY! He hadn't seen her in a 'week' he said! HAHA! A kid's week is REALLY long! When Bella got her first look at Brady, she just kinda stared, and then he made a funny face and loud noise and she smiled BIG and giggled out loud! It was music to our ears! She was still feeling really icky, but she wanted to play with him so badly! We let her play a bit before she got fussy and we knew it was time for night-night! Hopefully tomorrow she will feel well enough to enjoy her big brother's company! It makes me nervous, his being around her because he's a regular kid, and of course carries his share of millions of germs, but to Bella each of those germs could be a threat to her life, and it scares the shit out of me...for lack of better wordage! I'm so glad he's here though, and that look on her face when she saw him says it all! I'll just have to be cautious, and try not to be overbearing! Wish me luck!
Friday, August 1, 2003 8:56 PM CDT Day + 7
WBC: 0.1
RBC: 2.58
Well, Bella is asleep, and Everett is on his way to Iowa, and it's far too quiet in this hospital room. Boo had another good day. We got her first counts today. The nurse said her White Blood count needs to be 3.5 before she's able to leave. GO BELLA! I'm so proud of her my heart could burst! Today my grandparents came up, and I was surprised as to see my dad came with them! It was a nice surprise. Bella took a bit to warm back up to them...wasn't quite sure where she saw them before! She's so young, a month is a long time not to see your family members! GGma and GGpa brought a tape of Bucko for Bella and she LOVED it! She was laughing at the tape, and she starting looking on the ground for him whenever he'd bark. After awhile she got frusterated cuz she didn't understand where the dog was at! Poor thing! I can't wait til she's healthy again and can go torture the puppy like she's always loved to do! I hope the sweet child has a better night tonight, as I know we can both use a good night's sleep! More tomorrow....Love you all!
Thursday, July 31, 2003 4:48 PM CDT Day + 6
Bellaboo is having a pretty good day. She played hard with mommy, and then some with the physical therapists! She tuckered herself out and is now napping. Daddy thinks he sees definate signs of fattening cheeks! The doctors are still so pleased with her progress. Her eating is definately slowed, but she still attempts it, which is wonderful. The nutrients and calories she doesn't take in on her own are made up through her TPN and lipids. She has been a bit crabby today, and Daddy said she was up every hour last night. Tomorrow Bella's Great Grandparents are coming to visit! Daddy will be departing tomorrow as well, to go back and pick up Bella's big brother, Brady!! We can't explain to her what a GREAT weekend she has in store,but we know that when she sees the familiar faces of those she loves, she will be sooo much happier! Hopefully her visitors will keep her spirits high during the tough days ahead! We love you all! Thanks for checking in!
Wednesday, July 30, 2003 12:02 PM CDT Day 5
Bella is so bald! And sooooo cute!! Last night we shaved her head. She HATED that buzzing clipper though, and SCREAMED! But, I know she has to be more comfortable without all that hair falling in her face and tickling her nose and eyes! She started methylpred this morning at 1am. Its a steroid and will probably cause her to be pretty moody. Everett likes to call it her 'roid rage' LOL! It also can make kids excitable, and a lot of times they get night and day mixed up and will sleep all day, and be up all night. Joy for us! This morning Bella had platelets again, her level was down to 18! She had a little bit of a bloody nose, I think it was still irritated from the NG tube, and this DRY air in her room! For breakfast Bella ate a WHOLE jar of bananas! YAY Bellaboo! Pray that her good mood survives the next few weeks, as they will be tough on her little body! We'll keep you updated! Thanks for checking up on our beautiful bald babygirl!!
Tuesday, July 29, 2003 7:11 PM CDT Day 4
Bella is having another great day! They say that days plus seven through plus fourteen are the worst so we are enjoying Bella's wonderful mood. She is eating very well today and they have not replaced her NG tube. They are however going to start TPN tonight to supplement her nutrition through her IV. She won't need much, they are just putting her on a 14 hour cycle at night, as I said she is eating like a champ. She has a new found interest in eating frosting! She loves it and I can't help but think that the sugar is contributing to her good mood. Boo's hair started falling out today. We noticed it early today and by supper time she was reaching up and pulling out handfuls. We cut a few locks to keep in her baby book and decided to have it shaved off so that it won't be eaten or in her eyes. She was blinking like crazy as it was falling in her eyes and it is all over her bed. They will be in shortly to cut it off for her. She may look a bit different to those of you visiting in the near future but worry not as there is no changing Bella's golden personality-only her hairstyle.
-We have moved to a different room at the Ronald Mcdonald House. We are now in room 312. And our new phone number is 612-379-1130.-
Monday, July 28, 2003 6:45 PM CDT Day +3
Hey ALL!
One more great day under our belts! Isabella had her first platelet infusion this morning, as her count was down to 35 and they want it at 40 or above. She got a little fiesty today. She decided she needed a break from her NG tube, and took it upon herself to remove it! The doctor wanted to put it back in right away, but we discussed it, and decided to give her a break for a day or so, just see how she eats. She is still eating and if she can keep her own calorie counts up, why put her through getting that tube shoved back up her nose? So, we are going to try getting her to eat more frequent, smaller meals and hope that she will keep up her appetite! If not...well then, we'll have to do what we have to do. But for now, that's the plan...one day at a time! Bella didn't want a nap today til late this afternoon, she went strong all day long! She had physical therapy, and showed the ladies how much better she is at pulling up and squatting to sit back down. We are SOOO proud!! Hopefully since she hasn't slept much today, Bella will give Daddy a good night's sleep! Keep praying everyone, we appreciate it so much! God Bless!
Sunday, July 27, 2003 8:39 PM CDT Bella is still doing so GREAT! She continues to eat, though it has slowed, at least she's making the effort!! Today she has been especially smiley at all that enter her room. She has taken to waving again, after it's haitus for a week or two. There's not really much to report, since she's doing so well, take that as a GOOD sign! We still need everyone's prayers, as this is a long journey! Thank you everyone that signs her guestbook, it's very uplifting to hear from you all! Bella-boo is dancing in her crib, refusing to go to sleep just yet! LOL that girl is so amazing! Well, we'll keep you updated...pray for more of the same.
Saturday, July 26, 2003 8:24 PM CDT Today is Bella's first on the positive side! Numerically speaking anyway. She is doing wonderfully! Cruising around her crib and smiling and waving at all who enter! Her spirits are so high right now. She is still a little tuckered out from the chemo,but doing her best to entertain! She is still fascinated by her balloons. What a look of curiosity she has on her face when they float back up to the ceiling! She is,as always,too cute! She did not need any food from her NG tube today. Since they put it in she has been eating so much. Who doesn't love the sight of an expanded baby tummy! I guess we have nothing but good news today! Hopefully it is the beginning of a long streak of great days!
Friday, July 25, 2003 10:34 PM CDT We wanted to use this journal entry to thank everyone for their prayers, words,love,and support as we go through this journey with Isabella. It means so very much to us to have so many people call or sign her guestbook or simply say a kind word in passing. Thank you all and God bless!
Karen,Everett,Isabella,and big brother Brady
Friday, July 25, 2003 3:51 PM CDT Day 0
TRANSPLANT DAY!!
Bella had her transplant this morning at 11:30! She had a raise of blood pressure, so they righted it with medication, and a spell of nausea from the presevative that the stem cells were stored in, but after she settled in for a nap, things started to look much better! She now is playing on the floor with her new toy that she got from the hospital. Well, she likes the balloon that came with the gift better than the toy itself!! Haha, isn't that how it always goes? She seems to be feeling better than yesterday, smiling and dancing again for us! Our spirits are high and we are so hopeful for Bella's new chance at life! Thanks to everyone who continues to pray and support Bella through it all!!
Thursday, July 24, 2003 9:28 PM CDT As we speak Miss B is watching Brainy Baby in her crib and trying to get back to sleep. She always pulls her little feet up when she watches television. It is the cutest thing. Her NG tube is still attached,despite her best efforts to pull it out. Once she sets her mind to something I swear-look our world! We gave her a bath today and she seemed to enjoy it. She has always loved her bath time. It is one of those times that you can really tell that she is not feeling well though. She has some hives on her back-one of the side effects. Her fever is under control for the moment. We are excited about her transplant tomorrow. We finally get to be rid of all the negative days as Friday is Day Zero. We have never been more excited about a zero in our lives!It is the beginning of the next step in her life. In all of our lives I suppose. Everyone pray for tomorrow! I know ther will not be a big parade or fireworks, but we will be celebrating in room 205!
Thursday, July 24, 2003 2:09 PM CDT Bella just had an NG tube put in. They feel her calorie intake is not what it should be. It is a small tube that runs from her nose to her stomach. Watching them put it in was not a good experience. They end up taping it to a child's face to ensure that it will not come off. Being the strong girl that she is,our Bella has already managed to pull it partially out. They had to give her a sedative to calm her down and she is presently napping on mom. We feel that the feeding tube is a bit hasty as she is still eating. They didn't really give us a choice as to whether we wanted it or not. We came back from changing and they were all set to go. They can give her nutrition through her IV as well. The tube allows it to go directly into her stomach. Evidently it proves to be useful when giving medications that need to be taken orally. We were wondering what everyone's thoughts are on the subject?
Wednesday, July 23, 2003 10:00 PM CDT Day -2
Bella did continue to eat well today. She had around 16 ounces of formula and ate pretty good during mealtime. Hopefully the doctors will hold off on the NG tube! A few minutes ago she was coughing a little, and I went to check on her, and she was spitting up it looked like, so I sat her up, and sure enough, she puked all over her butterfly blanket! Poor thing didn't understand what was going on, as she has never thrown up before. So, we had to change her whole bed and her jammies. She is asleep again now, with a stronger dose of anti-nausea medicine that will hopefully take care of it. The nurse checked her vomit for stomach acids or signs that her stomach is bleeding, etc. and she said everything looks good, so I think this is another wonderful side effect of ATG. We hope she will sleep well tonight, and try for a better day tomorrow! Thanks for checking up on our babygirl~
Wednesday, July 23, 2003 4:35 PM CDT Bella got her second dose of ATG this afternoon. The accompanying drug, benedryl has succeeded in making her sleepy since. She started eating well again late last night and has so far today. There has been talk of her getting an NG tube put in. It goes in her nose and down her throat to her stomach and they feed her that way. Because she didn't eat well yesterday, they gave her today to see if she'd pick it back up, or stay the same, in which case, she'd need the feeding tube. They told us that the NG tube provides stimulation to the stomach and digestive tract while she's not eating, so that when she does start up again, she still recognizes the feeling of an empty 'hungry' stomach and that of a full feeling. The other option is TPN nourishment, which is through IV and in that case she might forget feeling hungry and such. So far today, she has done well eating, but after receiving ATG, we're afraid she'll drop off again. Cross your fingers, and pray no NG tube!!
Tuesday, July 22, 2003 10:03 PM CDT Today was going well enough, until the ATG started effecting little Bella-boo. This drug is derived from horses, so it's no wonder her little body is having a hard time with it! She started running a temperature late this afternoon, and tylenol hasn't kicked it. It's up to 101.4 and all she wants to do is lay in her crib. She doesn't even want mommy to hold her. :( I was thinking about her time in intensive care today. Watching her breathing with a tube down her throat. I can still hear the bells and whistles of all the machines those little angels were plugged into. I remember thinking that it would be the toughest thing that we would ever have to go through with Bella. I sat and watched her in her crib a few minutes ago. Just stared at her and thought about all that she has gone through with this MPS. Bella had to go down to x-ray just now. They needed a chest x-ray. She had a fever of 101.4. They are giving her some antibiotics just to make sure it isn't more than a side effect of the ATG. It is strange to see Bella just laying around. Anyone who has ever seen Boo-Berry in action knows that she is always moving. She just smiled a few minutes ago and gave us a "momma" and "bobba". She is currently playing with her blanket and attempting peek-a-boo with Mommy. Maybe she's feeling a little better, having slept the entire day away! We just took her temperature again and it's back down to 100.4! YEAH!! Hopefully our night will go smoothly! We'll keep you all updated!
Tuesday, July 22, 2003 2:04 PM CDT Day -3
Hey Everyone!
Isabella is taking a nap for the second time today....she is very sleepy. The physical therapist stopped in three seperate times wanting to work with Bella, but she's just not feeling the best today. She started a new drug, called ATG, which suppresses her immune system much like chemo, but is different, I guess. It can cause hives, rash, and fever, so she is also taking benedryl and tylenol to help prevent those things from happening. She is just wanting to sleep all day, I hope she doesnt think it's time to play tonight when Daddy is ready to sleep! Today I was looking at the calender, and getting antsy....only 3 more days til transplant! It's very nervewracking! Friday is (Day 0)transplant day, so I hope we have everyone's prayers to help Bella through it all! She is so strong-willed, we know she will pull through it all smiling all the way! I can't imagine how her little body must feel, and I just want to cuddle her and kiss her, but she doesn't want all that fuss...so I just stroke her hair and watch her sleep. Well, hopefully she will start feeling more herself soon, but they said she might have a couple days where she just doesn't feel good at all. The dread that 'in like a lamb, out like a lion' may ring too true for her haunts the back of my thoughts. She is still eating fairly well, which impresses the doctors, they keep anticipating her taper of appetite. I feel like we're waiting for the worst to come, which in a sense we are. Everyones prayers and well-wishes in Bella's guestbook are warmly welcomed! Keep them coming! Miss you all!!!
Monday, July 21, 2003 5:27 PM CDT Tonight we are going to a Twins game! The Ronald Mcdonald House had free tickets and it gave us the perfect opportunity to get out of the hospital together. Karla is going to stay with Bella while we are gone. Hopefully everyone will have a fun night!
Isabella slept really well for Daddy last night, waking only for chemo,diaper changes, and a couple bottles. She ate VERY well for lunch today. She had mashed potatoes and gravy and yummy pureed green beans!! The physical therapist and speech therapist visited Bella today. Even though she was in dire need of a nap, she still did well cooperating for them both! Right now Bella is bound and determined to get to the doctors instruments that are attached to the wall behind her crib. She walks all the way around the crib to get at them, and we have her blanket and carebear in front of it so she can't reach them, but she won't stop trying!! Its that sort of determination and perseverence that keeps that girl greeting each morning with a BIG bella grin! (HAHA! Bella got to the instruments and she started making a funny laughing noise when she got there! Now she is turning the switch on and off. It's a game! SOOOO cute!)
Sunday, July 20, 2003 8:46 PM CDT Today had it's ups and downs.Bella was her playful self for most of the day.She loves to cruise her crib and entertain anyone who enters the room.We got our first visitor today.Karla came to see Bella and sat with her for an hour so we could have a break together.It was strange to be outside the hospital room together without Bella.There was some blood in Boo's diaper today.They sent it down to the lab,but we have not heard anything back yet.It could be caused by a couple of things.We didnt' notice any so far after that one so we will have wait and see. Bella woke from her afternoon nap crying hysterically. It took her awhile to settle down. I think the mixture of Tylenol and ice cream helped! Bella was moving a little slower today. Perhaps as a result of the chemo. She wanted to go like crazy,but you could tell she needed a little more gas in the tank. Tomorrow is the start of a new week for Bella and we are both excited and nervous for her transplant on Friday. That little girl is holding strong enough for all of us. She is our hero!
Sunday, July 20, 2003 8:54 AM CDT Sorry we forgot to journal before bed last night. Bella had a hard time getting to sleep and when she finally did, we watched 'Monster's Inc'. Yesterday Isabella had occupational therapy, which concentrates more on her small motor skills, such as clapping, picking up objects, etc. She will have that again on Monday. I think it went well. Right now, Bella is watching 'Brainy Baby' and dancing to the music of the video! Its sooo cute! Last night Bella did pretty well, and let Mommy get some sleep! Today (day -5) she starts on a new chemo drug, called cytoxen. Cytoxen is hard on the bladder, they tell us and can cause bleeding, so they are giving her another drug to protect her bladder and increased iv fluids to make her pee more. We are to change her diaper every 2 hours while shes on cytoxen. Our aide today said that coming in this room is like a dose of good medicine, and that she'd need to come back every hour or two. There's just something about Bella......! Well, the breakfast tray just came, so I should get the girlie fed. More later.....
Saturday, July 19, 2003 11:47 AM CDT I just remembered a funny story I wanted to share with everyone. Since chemotherapy destroys fast-growing cells in the body, like bone marrow, hair, and the cells that line the mouth, as a precaution, we are to swab Bella's mouth out four times a day with a mixture of salt and baking soda. Well, one morning I forgot to dump the glass of salt and soda water after doing Bella's mouth care and Everett went to take his daily vitamin with his glass of 'ice water' on the table and got a huge mouthful of salty baking soda water! His face twisted and he had to choke it down since he had his vitamin to swallow as well. It was so hilarious! Needless to say, I am to dispose of her cups of salt & soda much more carefully now! I think God sent me some comic relief in a very serious time of my life. I still chuckle thinking of that face!!!
--Karen
Friday, July 18, 2003 7:42 PM CDT Hey everyone!
One more week til transplant! Today Bella worked with a physical therapist on bending down and pulling herself up. They work on making her joints more flexible. It is already working as Bella is pulling herself up in her crib as we speak. We thought she was going to climb out! Isabella is still eating really well, and no nausea has occured, which is GOOD! She finally slept a bit longer last night, perhaps the hospital isn't as scary anymore. We can tell she is getting worn out and tired more easily. She takes frequent little cat naps throughout the day. When she's awake though, she's as lively as ever, screaming and gurgling..impressing us to no end! Today we made the comment to Bella's nurse, as she finished a round of chemo, that it's so weird to imagine what's going on in her little body. And the nurse said that it is hard to imagine such a lethal dose of medicine being put into your baby. We also noted that you can't tell the effects of chemotherapy yet, so it makes it surreal, like its not really happening. 'YET' being the operative word here. We know the worst is yet to come, and sometimes find ourselves in denial. All we can do is love her though, and be there for her every step of the way. Her strong spirit and everyones faith and prayer will help us through.
Thursday, July 17, 2003 5:00 PM CDT Bella is in her third day of chemotherapy (day -8) and is doing very well. She is dancing and making all the nurses laugh from her crib. She has become a joy to the BMT floor. Everyone tells us how beautiful she is and her aide today said that Bella, in her east African language, means beauty. Our spirits remain high as our baby continues to smile. We'll keep you updated in the days to come!!
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