10th November 2008 Today we are preparing for Wednesday, when we head over to Great Ormond Street Hospital (GOSH) with Natasha because yet again Natasha has been refused to see the specialist she needs to see.... Natasha has spent most of the last month in hospital with reoccurring chest infections and over the past 2 weeks she contracted a very serious bacterial infection called Pseudomonas, she has had 3 different antibiotics, IV fluids, oxygen & suction at regular intervals daily, we were yet again told that we had to be prepared to bring Natasha into hospital sometime with her chest and not return home with her, concerned we requested to see a respiratory specialist and to no surprise we were refused this right because Natasha is a child with needs, we have now been left again to pay privately to travel across to London to Dr Suri who is the respiratory specialist in (Great Ormond Street Hospital), our appointment is on Thursday at 3pm, i will be back with a further update on our return home. Great Ormond Street All has been so worth while at GOSH, Dr Suri has been very positive, there are so many investigations Natasha needs carried out relating to her chest so she is going back as an in patient, he said it should be pretty soon. She has been started on a preventative medication which she takes 3 days out of 7 per week, she needs to have a CT Scan of her chest/lungs, Sweat Test, Reflux Study with possible surgery, Camera passed into Lungs, possible inflation and also full immunity test. Will be back soon with a further updates...
Ho Ho Ho! Christmas '2009' has been the best christmas ever, we got the best Christmas present anyone could ask for - having our little girl at home, it was so much fun, we got up opened pressies, played with Natasha and seen her little face shine at her brights lights from Santa but of course she loved the wrapping paper Lol! See Natasha below, all dressed in red for the occasion.....
Still awaiting date from Great Ormond Street, hopefully wont be long, have been speaking to Dr Suri's secretary and we should hear by end of January if not I've to call her back again. Natasha has a few chest infections over the last few months but thankfully mild enough to be treated on continuous oxygen and antibiotics at home so i continue to pray that it won't be long until we are at GOSH to get to the bottom of what is causing her chest and lungs to infect so often.
Yippee Natasha is off to Great Ormond Street on Monday 9th February, scheduled tests have been organised over 3 day period to investigate the reoccurring infections of her Chest and Lungs. Natasha is scheduled on Monday for a CT Scan (under sedation), Bloods, Speech & Language Review. Tuesday PH Study over 24hours and Wednesday an Upper GI Study and Sweat Test.
Well we are very proud parents, on Saturday Natasha reached out for the first time to touch her ball, not only did she reach out and touch it, she lifted it up to her mouth. It's so touching to see Natasha do little things as I'm sure you will all understand it a lot of hard work for her to reach these goals and it feels so good to see her take another little step forward. It's such a big achievement for Natasha! Of course that wasn't all, she had to show us what a clever little girl she is by clapping her hands, now almost every time we sing 'Clap a Hands' Natasha has fun and joins in, its amazing and brings tears to my eye each time i see her little smile light up when she has done something by herself, she is a little miracle... 4th February 2009
Natasha attended the Opthalmology on 2nd February and she has been diagnosed as being very short sighted, she was given a very strong prescription for Glasses -7 in the left eye and -8 in the right. Natasha and i with our friend Carol went out looking for glasses and as you can see doesn't she look cute.... 12th February 2009 Great Ormond Street Well the past week has been a busy one, Natasha give us a little fright on Friday night when she was admitted to RBHSC when her oxygen levels dropped into the mid 70's and Heart Rate reached 214 just before we were due to fly out to GOSH on Sunday, cut a long story short we got there in the end.
Natasha OK for travelling and the remaining results will be given to us in 3 to 4 weeks time on our return to GOSH. Natasha will also be attending a Private Therapy centre in London for an assessment of Physical and Speech Therapy.
Back to Great Ormond Street Date through to return to GOSH, heading back on 18th March for results of all investigations that were carried out on previous visit, Natasha will also have to undergo a further sleep study to find out cause of de saturations. Further update will be posted on our return home.
Intense Therapy to Begin Natasha will begin intense therapy on 14th April, attending the Child Development & Therapy Centre in London. This centre is highly experienced in working with children who have difficulties, two of the areas in which they specialise are in Children with Genetic disorders/syndromes and Low tone / "floppy" child which is suited to Natasha's needs.... Also an update on Chicago will be posted soon, we aim to return with Natasha around June time for her first review, also while in Chicago we hope for Natasha to commence the Vital Stim treatment to improve the control of her own siliva and to train her swallow making it safe.. This is all pending Natasha responds well to the course of intense therapy as the muscle tone in her upper body needs to improve to give her the best chance at the Treatments available in the US... We have every faith that she will as up to date Natasha's response has been amazing since her Journey began.
Therapy Improving Natasha's Communication Skills Natasha attended Therapy4Kids in April for 4 days and returned in May for a full week of intense therapy, already we are seeing an improvement in Natasha's tone and a big step forward in her communication skills. Natasha is showing signs of understanding 'Yes' and 'No', when singing songs she will look at us to continue if we leave the last word out and also makes a sound. When playing with Natasha if we ask does she want more she will get excited and again make sound to let us know she is enjoying playtime. We are returning on the 25th May for a four week course and then again on 6th July for the full six week course so hopefully by the end of August we will see another little step forward for our Princess. 9th June 2009 Set Back for Natasha Sincere Apologies firstly to everyone who has been following Natasha's progress for not updating the website in so long.... Natasha has had a major setback and we have been sitting with her morning and night in hospital since 21st May.
levels dipping into 60's off oxygen and 80's on oxygen, she was admitted with temperatures off 105 and requiring 15 litres of oxygen, sent to the ward Natasha showed no sign of improvement spiking temps continuously for twelve days and receiving chest physio 3 times daily. Natasha was then transferred to Intensive Care Unit on Tuesday 2nd June due to increased Respiratory Distress she couldn't fight any longer giving up breathing she was put onto a ventilator and required ventilation until Sunday 7th June. Natasha had suffered severe respiratory infections and other infections, she had Influenza, Rhinovirus, Psuedomonas, Adnovirus and Entrococolus. Now out of Intensive Care and back into Paul Ward Natasha is on external ventilation (Bipap) 2 hours on and 2 hours off on nasal specs still remains on iv antibiotics and continuous feeds. We Thank all the Staff in ICU and Paul Ward for their excellent care and attention in helping us all through this difficult time. We also wish to Thank everyone who has sent good wishes and who have been praying continuously for her. Monday 22nd June Natasha remains in hospital improving slowly, tests have shown significant reflux. When Natasha is being fed directly through her G tube the milk is refluxing up into the food pipe and spilling over into lungs. The decision has been made for Natasha to undergo a fundoplication. This is to tighten the stomach to prevent milk and acid from leaving the stomach. The outcome hopefully will be less respiratory problems and an improvement in Natasha's overall health. This decision hasn't been made lightly as Open Fundoplications is invasive surgery and can take allot of time to recover, so please keep Natasha in your prayers and i will return with an update after Surgery.
Natasha still in Royal Sick Children- The past 2 weeks has been so hard on her wee body, the decision of a Fundoplication was cancelled as the surgeon felt it could be a risk to Natasha as even though the stomach would be tightened to prevent reflux and aspiration, the saliva could pool above the tightening and overspill causing her lungs to drown, we were given further options and the first option was to get a Jejunostomy fitted which passed from the stomach down through the small intestine, Natasha went through this procedure on Friday the 26th June. Unfortunately it turned out to be unsuccessful were on Sunday 28th June the tube turned back on itself into the stomach causing a further case of aspirating the contents into her lungs....
has been gradually re-established onto formula feeds, still very tender Natasha's site is leaking causing her some pain, we are hoping that this puts an end to all the severe respiratory infections and we see an improvement again in Natasha's health. All we ask that everyone continues to pray for Natasha and we thank everyone involved in making Natasha's Journey a Great Success so far.... Natalie & Ian Falls
Firstly i would like to thank everyone for their support and prayers, we found ease from all the prayers around Ireland and for all the support at the time of need when Natasha fell very ill. During this time i apologise for not having updated the website, i hope everyone understands that it was the last thing on my mind when Natasha was so ill.
nurse and was only home a short time when she was admitted again crying in pain constantly for two days, she was in for a week and sent home, putting it down to possible Gastro Bug. Again home, a few days and readmitted with pain, this time put onto IV antibiotics for her Chest as the xray had showed very little improvement, Natasha was taken to intensive care again on Thursday 13th August put onto Life Support with the doctors being very concerned, spoke to myself, daddy and Grandparents regarding end of life, which was so devastating for us all as a family to take in, but all i can say at this point is thanks to the Lord for answering our prayers, at this stage all i prayed for was one more time i was looking no further than that, i just wanted to be gifted with a little more time to cuddle, kiss and tell Natasha how we feel and enjoy being a parent to our Beautiful Princess. We were so delighted when Natasha began to come round and on the 17th August was taken off ventilator which she found a struggle to begin with but with perseverance she proved she could fight back once again. Discharged from ICU on 18th August to ward, we then got her home on 24th August, time became even more precious to us. We have had allot of tough decisions to face, ie should Natasha be ventilated in the future or nursed at home to end of life, do we put her through anymore surgery etc. Natasha had Aspiration Pnuemonia and Pseudomonas.
Natasha's Discharge meeting this week. The doctors in which Natasha was under have agreed that Natasha has surprised them all, as one stated she has written another chapter of her own book again, they agree that Natasha is extremely well now and still remains having issues with her chest but they are working hard to get to the bottom of them to help improve her quality of life. We have been so fortunate that we have Natasha's care under an excellent Respiratory Specialist and an excellent Paediatric Surgeon. A BIG Thank you to both as well as all the extremely professional staff in Intensive Care and all the staff at ward level.
17kg she is turning into a little toddler. Still requiring a little more oxygen than previously but hoping that through time as she gets stronger her lungs will too, and oxygen requirement may come down. Natasha's last chest xray in October showed that the collapse on Natasha's Left Lung had started to improve a little, which to us, this is absolutely brilliant as it shows that Natasha still remains strong and continues to fight on. We had one admission this month were Natasha had a few Blue Episodes in one week but prayers continuing there has been no further noticed. Natasha was sent home with no explanation as the what these were but we continue to keep a really close eye on her at home, awaiting appointment with Cardiologist at Royal Sick Children's Belfast...Also returning to Great Ormond Street Hospital for further Sleep Studies were we will hopefully get an answer to any questions, is it Sleep Apnea increasing, Seizures Returning etc
frame with pelvic support all to encourage trunk control, posture and weight bearing to give Natasha a better chance at standing/possibly walking. This will help improve muscle tone and encourage further development. Finally for now she will also be getting sized for a suit which will help her to keep good posture and make her become more aware of her body and surroundings, this will be wore under her clothes during the day. Well thats all for now, will be back with another update and some photos very soon.... We can't Thank everyone enough who has donated to Natasha's Journey of Hope or has helped with fundraising events so far, without you all this journey for Natasha would not have been possible... You have already helped improve Natasha's quality of life and we have seen many positives since treatment began at Children's Memorial Hospital, Thank You all so much... |
| 10th March 2007 |
| Natasha's Journey of Hope |
| Great Ormond Street, Therapy & Updates from Home |
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| Natasha in Christmas Day |
| Natasha with Santa |
| Getting tired after opening pressies |
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| Natasha Playing with Car |
| Natasha Sitting in Bumba |
| Natasha Standing against Bench |
| Before Intensive Care |
| Intensive Care Unit |
| On Bipap after ICU |