Tumblr (3.0; @ourbellarose)http://ourbellarose.com/<img src="http://29.media.tumblr.com/tumblr_lpjxcaxE4q1qc1eqfo1_500.jpg"/><br/><br/><p>Today at Ava’s party, and me in my princess outfit</p>http://ourbellarose.com/post/8595422800http://ourbellarose.com/post/8595422800Sun, 07 Aug 2011 20:26:34 +1000<img src="http://27.media.tumblr.com/tumblr_lpjxjznWfp1qc1eqfo1_500.jpg"/><br/><br/><p>Visiting Grandpa at his work</p>http://ourbellarose.com/post/8595495721http://ourbellarose.com/post/8595495721Sun, 07 Aug 2011 20:25:37 +1000<img src="http://24.media.tumblr.com/tumblr_lpjyb4oEh71qc1eqfo1_500.jpg"/><br/><br/><p>Last week in my little bear suit. I am 15 months old.</p>http://ourbellarose.com/post/8595754867http://ourbellarose.com/post/8595754867Sun, 07 Aug 2011 20:24:55 +1000<img src="http://30.media.tumblr.com/tumblr_lpjyb7U3IB1qc1eqfo1_500.jpg"/><br/><br/><p>Styling with my new hat</p>http://ourbellarose.com/post/8595755535http://ourbellarose.com/post/8595755535Sun, 07 Aug 2011 20:23:57 +1000<img src="http://29.media.tumblr.com/tumblr_lpjyjdpmjq1qc1eqfo1_500.jpg"/><br/><br/><p>Grandma and Mummy helping me stand</p>http://ourbellarose.com/post/8595834169http://ourbellarose.com/post/8595834169Sun, 07 Aug 2011 20:23:21 +1000<img src="http://30.media.tumblr.com/tumblr_lpjyjirOy71qc1eqfo1_500.jpg"/><br/><br/><p>Today at cousin Ava’s birthday</p>http://ourbellarose.com/post/8595835565http://ourbellarose.com/post/8595835565Sun, 07 Aug 2011 20:22:36 +1000<p>7th August 2011</p> <p>Well Bella Rose has been going fairly well, although 3 weeks ago she was back in hospital with pneumonia.  So they gave her intravenous antibiotics for 24 hours and Tash had to give her physio 3 times a day to move the fluid off the lungs.  Bella is feeling better now. </p> <p>Bella is advancing with her motor skills she can stand with assistance, she is learning to go from her tummy to a sitting position.  The most clever thing she has done is she has started signing.  Due to her vocal cords being damaged signing is a part of Bella’s life.  She is a happy little girl when things are going well. </p> <p>Bella’s has grown out of the snorkel she goes to sleep with so Tash is back up to Brisbane Mater tomorrow to see if they can fit her with a new one. It will take Bella a while to get used to having a new apparatus on her face.</p> <p>Tash spends a lot of time at appointments at Gold Coast and in Brisbane. It is a big effort to get out of the house with all Bella’s gear that must accompany her.</p> <p>Grandma S has been enlisted as Friday carer while Tash does a day’s work back at her old workplace. Bella loves Grandma who always manages to hype her up and get a good reaction.</p> <p>Tash and Eric are remarkable parents who encourage and stimualte Bella all the time and she is responding well. Her latest trick is army crawling backwards after getting herself up from the prone position.</p> <p>Please pray that Tash & Eric can get respite as they have disturbed sleep every night with Bella as she has to have meds administered in the middle of the night and a good night is when Bella only wakes 3 times.</p>http://ourbellarose.com/post/8595338488http://ourbellarose.com/post/8595338488Sun, 07 Aug 2011 19:31:00 +1000<img src="http://28.media.tumblr.com/tumblr_lni2ohnVdO1qc1eqfo1_500.jpg"/><br/><br/><p>I love spending time at the beach with Dad & Mum</p>http://ourbellarose.com/post/7008966178http://ourbellarose.com/post/7008966178Tue, 28 Jun 2011 22:32:03 +1000<img src="http://30.media.tumblr.com/tumblr_lng9rwerLa1qc1eqfo1_500.jpg"/><br/><br/><p>Bella and her play station</p>http://ourbellarose.com/post/6972719095http://ourbellarose.com/post/6972719095Tue, 28 Jun 2011 03:07:00 +1000<img src="http://24.media.tumblr.com/tumblr_lng9b480Fi1qc1eqfo1_500.jpg"/><br/><br/><p>Tash, Eric & Bella at the “Mater Little Miracles Walk”</p>http://ourbellarose.com/post/6972558977http://ourbellarose.com/post/6972558977Tue, 28 Jun 2011 02:57:00 +1000<p>27 June 2011</p> <p>In the last month since the previous update Bella has continued to improve and she is giving much love to those who she comes in contact with. Bella doesn’t talk but she communicates in her own special way. She has her special looks and little tricks to get attention. She also gives lovely cuddles. Bella, however, does still need constant care and she keeps Tash& Eric very busy.   Tash has many days with appointments  during the working week.  Her appointments consist of physio, occupational therapy, speech, cardiac, respiratory, pediatrition appointments and gastro to name a few.</p> <p>Several weeks back Bella had an overnight sleep study at the Mater and subsequent to this, Bella had her o2 reduced 1 lt to 1/2 lt per  min during the day and her night time has been reduced from 3 lt to 1 lt via the CPAP mask. Bella has adapted well to the new settings after a period of adjustment.</p> <p>On 5 June 2011 Bella had a support team of about 20 family and friends who participated in the Mater Little Miracle 5klm walk. The team was all kitted out in pink “Bella’s our Miracle” shirts - even the boys were in pink.</p> <p>Bella’s J tube worked its way out recently which Tash was able to re-insert but they had to take a trip in to the Gold Coast Hospital ED when the tube kinked again. After 7 hours waiting they got Tash to re-insert the tube again as none of the medical team had done it themselves. Tash, Eric & Bella got home at 4am, tired hungry and not too impressed at the situation.</p> <p>Last week Bella had a visit with the cardiac team at the Mater and they discovered she has gerbode defect in her heart which is a very rare condition that her treating cardiologist knew of but has never seen one before. We just hope and pray that Bella will be able to cope with this and not have to have more open heart surgery to fix this problem. </p> <p>Bella has her gastro review this week at the Mater so it is another trip to Brisbane. Grandma will accompany Tash & Bella to the Mater as it is an early start.</p> <p>Tash has returned to work one day a week out of necessity which means Grandma is Bella’s carer for the day which is a privilege but a big responsibility. Bella loves her Grandma and gets very excited when she sees her.</p> <p>Eric gets to look after his little girl for the full day by himself this coming Friday as he has the day off while Tash is at work.</p> <p>Bella enjoys going to the park with Mum & Dad, family and friends. She also loves the beach.</p> <p>Bella is a very happy and contented little girl who is a little treasure.</p> <p>Please pray that Bella continues to stay well and continues her steady improvement. We also pray that Tash & Eric get sufficient sleep to cope with the ongoing demands of caring for Bella. Please also pray that Tash & Eric are granted some home help that hey have requested.</p>http://ourbellarose.com/post/6972332756http://ourbellarose.com/post/6972332756Mon, 27 Jun 2011 22:42:00 +1000<img src="http://30.media.tumblr.com/tumblr_llydx4xzrc1qc1eqfo1_500.jpg"/><br/><br/><p>Just chilling in my swing on the deck at  home</p>http://ourbellarose.com/post/5961063385http://ourbellarose.com/post/5961063385Sun, 29 May 2011 20:50:23 +1000<img src="http://27.media.tumblr.com/tumblr_llydx2Q48L1qc1eqfo1_500.jpg"/><br/><br/><p>I can stand with a little help. Before you know I will be walking around the place.</p>http://ourbellarose.com/post/5961062840http://ourbellarose.com/post/5961062840Sun, 29 May 2011 20:49:35 +1000<img src="http://29.media.tumblr.com/tumblr_llydwwnkhf1qc1eqfo1_500.jpg"/><br/><br/><p>Look at me I am a little princess. Posing in my dedication outfit.</p>http://ourbellarose.com/post/5961061608http://ourbellarose.com/post/5961061608Sun, 29 May 2011 20:48:51 +1000<img src="http://24.media.tumblr.com/tumblr_llydwu7QwE1qc1eqfo1_500.jpg"/><br/><br/><p>I love going  to the park with Dad & Mum</p>http://ourbellarose.com/post/5961061061http://ourbellarose.com/post/5961061061Sun, 29 May 2011 20:48:02 +1000<p>27 May 2011</p> <p>Since the last update from several weeks ago Bella has continued to make steady improvement. She is now able to stand with assistance.  She has another few front teeth that will fill gaps next to her prominent left central.</p> <p>The Newcastle Jacombs were up for a visit and spend precious time with the Queensland Jacombs.</p> <p>Tash is kept particularly busy looking after Bella as she requires constant supervision in addition to regular visits to the hospital for physio, speech & occupational therapy. Trips to the hospital are a challenge as there is so much to take and there is no parking nearby, sometimes Grandma is on hand to assist.</p> <p>Bella is responding well to the stimulation that Tash & Eric provide which is a great credit to them. Bella is now taking some food orally although she continues to be fed through the J tube. Last week Bella managed to drink 60mls from her bottle which is a great effort. She is even drinking water from a cup.</p> <p>Bella is booked in for a sleep study at the Mater next week. Unfortunately Tash has come down with a chest infection and cold. Please pray that she recovers quickly and that Bella does not catch it either as this will mean the sleep study will be deferred.</p> <p>Next Sunday 5 June 2011 the Mater Little Miracles fundraising walk will be held at Southbank, near the Mater Hospital. Team Bella will be participating. If you are interested in joining team Bella for the walk, please log on and register to walk or donate at <a href="http://www.everydayhero.com.au/bella_rose"><a href="http://www.everydayhero.com.au/bella_rose">www.everydayhero.com.au/bella_rose</a></a></p>http://ourbellarose.com/post/5883956065http://ourbellarose.com/post/5883956065Fri, 27 May 2011 11:31:00 +1000<p>Sunday 8 May 2011</p> <p>Happy Birthday Bella - congratulations on your first birthday. The fact that you made it this far is a miracle in itself. We thank God for bringing you through and that you were born to such amazing parents and have a very supportive extended family.</p> <p>In the years to come we will all look back and reflect on the strength of character displayed by this Jacombs family. Bella you bring so much joy to so many and you probably do not realise how many people you have touched with your incredible will to fight the good fight.</p> <p>Tonight you are dedicated in the Southport Chuch of Christ amonst family and friends who have prayed for and supported you through your journey so far.</p> <p>We hope and pray that you will continue to inspire as as you grow bigger and stronger. We love you precious one - you are our inspiration.</p>http://ourbellarose.com/post/5289694116http://ourbellarose.com/post/5289694116Sun, 08 May 2011 11:10:45 +1000<img src="http://24.media.tumblr.com/tumblr_lk9beaZWlx1qc1eqfo1_500.jpg"/><br/><br/><p>Cousins at play</p>http://ourbellarose.com/post/4954015512http://ourbellarose.com/post/4954015512Tue, 26 Apr 2011 21:38:13 +1000<img src="http://26.media.tumblr.com/tumblr_lk9burthMg1qc1eqfo1_500.jpg"/><br/><br/><p>Bella in her wedding outfit</p>http://ourbellarose.com/post/4954134712http://ourbellarose.com/post/4954134712Tue, 26 Apr 2011 21:37:39 +1000<p>26 April 2011</p> <p>Well it has been 3 weeks since the last update and Bella continues to thrive at home although she had a trip back to the mater recently when her Jejunostomy worked its way out. Tash & Eric spent the best part of last Saturday in the ED at the Mater waiting for a gastro specialist. Fortunately Tash spotted the head gastro surgeon passing and grabbed him before he got away. Under instruction from the surgeon Tash actually inserted the new J tube.</p> <p>There continues to be a lot of firsts for Bella. She has just celebrated her first Easter and managed to spread a bit of chocolate over her face.</p> <p>Bella also attended her first wedding when she  witnessed cousin Christie & Jim marry at Mt Tamborine on 16 April 2011. </p> <p>She went to church for the first time at an evening service recently and coped well with all Mum & Dad’s friends coming to say hello.</p> <p>Bella has also been to visit some of her friends at their home and has also had visits form friends at home.</p> <p>Bella was head of the table at the first family dinner recently with Grandma & Grandpa S, the three girls and their husbands and the 2 little grand children.</p> <p>Bella still has regular appointments with her specialists both here on the Gold Coast &  in Brisbane.</p> <p>Over the Easter weekend Bella’s ventilator malfunctioned and continually alarmed during the night. 23 interruptions to sleep during one night was just a bit too much for the Jacombs clan so it was another trip up the M1 to the Mater to get a replacement ventilator.</p> <p>We continue to be very thankful for ongoing improvement and for answered prayers. Caring for Bella is  quite challenging and just getting out the door with all the extra equipment is no easy task and requires 2 people. Tash & Eric are amazing parents and Bella is a very lucky girl to be born in to this family who loves her so much. Grandma has been on hand to help out where she can and is thankful she doesn’t have to do the trip up to Brisbane all the time.</p> <p>Bella enjoys her visits from family and friends and the freedom of her own home. Bella will be having her dedication service on Sunday 8 May 2011 at 5pm at the Southport Church of Christ, Olsen Avenue (opposite Bunnings). Tash & Eric would like to invite all their friends and those who have supported the family in prayer through Bella’s journey so far.</p> <p>Tash has shown Bella how to cuddle and snuggle into her as she missed out on the normal cuddles for months and months due to her being connected to all her machines.  Tash just says cuddle and she lays her head into her chest for a snuggle it is sooooo special.  Bella continues to enjoy the trees outside her window and if you have watched the “The Castle” Bella has that look of serenity on her face. </p> <p>Bella has put on weight and continues to be fed through her J Tube although she is now taking some food orally.  She now weighs 8.1kilos.</p> <p>Please pary for Bella’s health, and ongoing development and for continued strength for Tash and Eric as she needs lots of care.</p>http://ourbellarose.com/post/4953386085http://ourbellarose.com/post/4953386085Tue, 26 Apr 2011 20:24:00 +1000