This week Natasha begins intense physical therapy for her development, 1 hour sessions, hopefully twice daily, depending on other appointments. Initially this is to help improve her muscle tone, strengthen her trunk and give better head control.
Natasha began Intense Physical Therapy today with Kerri at Children's Memorial Hospital. Kerri was very positive about Natasha's outcome, she stated that Natasha wants to do more than her body allows, which is a good, very good! With Intense therapy Natasha's body should hopefully begin to work in connection with her mind, causing less frustration and will enable her to coordinate to her full potential. Will be back to add a further update in one week, any questions please do not hesitate to contact us.
After meeting with Dr Nordli on Thursday we know we have Natasha in the best hands at Children's Memorial Hospital. Dr Nordli is confident he will get Natasha's seizures under control with a bit of fine tuning required but firstly 2 other complications have come to light that needs investigated priority. Natasha's oxygen levels are dropping and heart rate is increasing which has raised concern, she is being readmitted to hospital for a sleep study which will measure - The airflow, Heart Rate & Rhythm, Oxygen Levels, Chest Wall Movement, Abdominal Wall Movement, Limb Movements, Eye Movements. Also After inspection of the MRI it has shown that the ventricles in the brain are enlarged which is causing more excess fluid on the brain a specialist who specialises in this field has commenced investigation. 23rd July 2008 Natasha is being admitted to Central Dupage Hospital on Monday for her Sleep Study. She is no longer having seizures through the day but continues having 1 - 10 nocturnal seizures during the night, causing her oxygen levels to drop and her heart rate to increase, Dr Nordli is confident that these can be brought under control. A Major Achievement for Natasha Natasha is now clasping her hands and has started to roll from her back onto her stomach using her elbows to put weight through her arms to hold her head up.
Natasha was admitted to Intensive Care on Sunday 3rd August, now moved to Floor 3 in Children's Memorial Hospital. Admitted with vomiting, breathing difficulties and oxygen levels dropping, continues at present on oxygen and getting regular Respiratory Treatment and pain relief, breathing still very laboured, awaiting consultation with surgeon. Will be back with any further updates or improvement at the earliest convenience., please continue to say a prayer for Natasha.
Natasha was readmitted to intensive care today to commence Bipap Therapy which she will remain on for the foreseeable future at nights. Bipap is a machine which helps her to breath, it gives continuous breaths per minute and will automatically kick in when Natasha stops breathing during sleep. How it works- its a little hat that goes over her head attached to a mask with tubing connecting to the machine, it gives continuous pressure and pushes air in as Natasha takes a breath in but also at the episodes when Natasha stops breathing it will breath for her. Natasha for Surgery Friday 8th August 2008 Today Natasha is going for surgery on bowel/stomach and to have a G Tube placed above her belly button which goes directly into stomach for feeding. The G Tube will give Natasha a better chance at learning to feed orally when it is safe to do so. Surgery at 10.30am so i will come back with an update afterwards... Surgery a Success sSurgery has been a real success for Natasha, yesterday she was very uncomfortable afterwards, she was given morphine and other pain relief to make her comfortable. Two tiny incisions where made on investigation of Bowel/Stomach, one through the stomach and one upper right. The G Tube was placed and since surgery G Tube has been a real success and has worked well with feeding. Natasha as i type is lying here looking at her doll and watching her little toy flash, she is at more ease this morning but remains on a low dose off morphine for comfort... Monday 18th August Natasha is now tolerating her feeds again and is hopefully being discharged from hospital today, she will remain on continuous oxygen at home during the night whilst sleeping to prevent oxygen levels from dropping. The G Tube has been very successful and definitely a big improvement from the NG tube which was passed through her nose into her stomach. We have been given the all clear in regards to the ventricles of the Brian being enlarged, it's been confirmed they are enlarged but not within area of concern so we are delighted. We are awaiting dates now to commence Vital Stim treatment which will strengthen Natasha's throat muscles and train her swallow which will encourage eating orally. Hopefully Natasha will be fit enough to return to intense therapy next week... Will be back with an update...
Natasha started back to therapy today, had 1 hour of Physical Therapy and 1 hour of Occupational Therapy, she did extremely well for returning to therapy after admission to Intensive Care. Tomorrow Natasha has Occupational Therapy for 1 hour and then next week she is returning back to full programme of intense therapy again which will continue until end of September. Monday 8th September - Home Sweet Home Well here we are back in good old Sunny Ireland Lol! We arrived home yesterday and leaving the sunshine behind us. We came home 2 weeks early as Dr Nordli was going on leave for 1 month and after ICU and Surgery Natasha was limited on what therapy could actually be carried out for the remainder of the month. We also had the fear of admission to hospital again with chest over winter as costs of ICU were $100,000.
the intense therapy is helping to progress her development. Natasha now bears weight through her legs and is beginning to gain more strength in her trunk which will hopefully work her towards sitting unaided.
brain and hopefully if she remains seizure free medication will be reduced further. Natasha will also be undergoing Vital Stim Therapy then, as she was unable to carry out course of treatment on this visit due to falling ill. Vital Stim is a 6-8 week course that will strengthen the throat muscles and train her swallow to encourage oral eating, it would be so good if she then comes home tasting foods. Whilst in Chicago she will continue her Programme of Intense Therapy to continue to help progress her development further. 28th September 2008 Well what can we say, other than glad to be home, it's taken almost three weeks to settle back home and get back into routine again... Natasha had spent 5 days in The Royal Sick Children's, Belfast with a chest infection brought on by change of weather, she is back home with us now and continuing to improve, still a little wheezy. In the meantime we are still working very hard to continue fundraising for Natasha's next Journey to Chicago in May next year...please visit the pasts events page to see some of the events in which we have attended since our arrival home... We are continuing to do Therapy ourselves at home where possible, we work with Natasha's movements twice a day for one hour, the first hour is positional and second hour is play...Natasha continues to stand as above and is improving in the sitting position, she continues to use her hands and enjoys touch, we use various different textures to enhance sensory awareness. It means so much to us seeing Natasha interact and enjoy play and believe me she does shout if she is ignored Lol!
support to Natasha's Journey of Hope.
The Sun is Shining, Natasha received her standing frame on 8th October and is doing extremely well in it, she has been standing for 2 hours per day and is really enjoying it. This will help build up her trunk and head control and encourages weight bearing through her legs. We have noticed a great difference in just over a week, Natasha's head is becoming more steady and she can now hold it up straight for much longer, Pictures below - As you can see Natasha has started to suck her thumb and plays constantly now with her hands, she has also found her voice and is enjoying making lots of noise. Over the last couple of days we have noticed an improvement in her alertness, when lying on the floor she has started to shake her arms and legs to music, we having so much fun being able to interact with her now, its so good. In the meantime we would like to Thank everyone so much who has donated to Natasha's Journey of Hope or has helped with fundraising events so far, without you all this 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 |
- Natasha's Progress:
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| Natasha Commences her Treatment - |
| New Friend For Natasha ENTER! |
| Little Miss Giggles! |
| Sitting for a Few Seconds! |
| Standing for a Minute! |
| Sucking Thumb in Standing Frame! |
| Wow look at my Head Control! |
| Playing with Hands Having Fun! |
