June 21st, 2009 by aimeem
As I mentioned a few posts ago we had taken Sydney-Mae to the Emergency Doctor three weeks ago due to her face becoming swollen and her generally being off colour. In the past three weeks we took her back to the GP a further four times as this kept happening but each time we were told they did not know what it was, but not to worry! Last Monday Sydney-Mae became very grupmy and was crying lots and lots- she appeared to have lost her personality! I was begining to worry that she was having painful seizures- with me it always goes back to that. On Tuesday Ross and my Mother In Law both observed her flinching as though she was in pain and she would then really cry. By Wednesday morning it had become apparant to us that she was suffering some sort of pain on the right hand side of her face by her ear- I gave her a kiss and she jolted out of her skin and was crying hysterically. I took her to the GP and the GP said that Sydney-Mae had a swollen Lymph Node Gland next to right ear that was maybe slightly tender. That night Sydney-Mae was feverish throughout the night but by the following morning she appeared to be a lot better.
By the evening she had taken a turn for the worse and was hyeterically screaming and we were unable to console her. Each time we picked up her she would flinch and cry. We took her back to the Emergency Doctor who touched her face and she screamed the surgery down! He asked if she has had all of her injections and I explained that she has not yet had her MRI due to having been ill and also that she is having them individually. The Doctor said we needed to take her to the Children’s Hospital to be checked over by a Paediatrician. He thought Sydney-Mae may have had the Mumps. Once at the hospital we waited to be seen by a Doctor for 5 hrs and were finally seen at 3am. After examining Sydney-Mae (who was very unimpressed to have been woken and undressed at that hour) she said that Sydney-Mae had Lymph Node Glands on her face and neck that had become infected and were very very painful. She said she would send us home with Antibiotics. We waited another 2 and a half hours and a senior Doctor came to examine her and said she was going to admit Sydney-Mae as she wanted a Surgeon to see her and if see if the Glands needed draining. Within a few moments she changed her mind and said we could take her home with some Antibiotics and if they had not helped in two days time we were to bring her back. She said they would take some Blood tests before we left as they had to eliminate the glands being Cancerous- shocking to hear that word in a sentence about your year old baby who has already been through so much. The Doctor did say she didn’t think it would be but they just had to check.
We finally got home at 7.30am just in time to get Talor up and ready for school and let Gramps go home as he had been sat on our sofa all night! We called the hospital at lunchtime who advised that the results had come back and all were fine- her Bone Marrow, Liver and Kidneys were all working perfectly well- the test showed she had an infection which confirmed her Glands were infected. We were obviously so releived, so thankful. My Nephew had Lukemia when he was three so we have experienced the trauma first hand of Childhood Cancer and appreciate there are many families out there who have not been so fortunate as we are to have been given that news. Sydney-Mae has responded greatly to the antibiotocs and is back to her usual smiley self- that’s the Sydney-Mae we know and love!
June 17th, 2009 by aimeem
One thing any parent with a special needs child will know is that they have a crazy amount of appointments to attend on a regular basis. If it’s not Pysio it’s Speech and Language Therapy or Osteopathy or Occupational Therapy or……………..I could continue all day but I am sure you get my drift! This past week has been one of those manic weeks where between appointments and work I have had no time for anything else. We saw the Osteopath Stuart Korth who I describe as the Dr Doolittle for babies! He just really knows his stuff and has a fabulous reputation. He was really impressed with Sydney-Mae and he said that he felt that socailly she was ‘home and dry’ which was awesome to hear. He said he felt it was a case of ‘when’ she speaks not ‘if’ which is a real comfort for us to hear as speech is of utmost importance for us. As long as she can communicate with the world we are happy. He also said he feels she is on her way to sitting unaided so all in all an uplifting visit. The Speech and Language Therpaist also agreed with Stuart about speech. I had a few concerns about the way Sydney-Mae was eating- I felt her tongue was in the way. The therapist agreed and said that she has a slight tongue thrust so we have now been shown ways to help her overcome it. She also sits there sometimes with her tongue hanging out bless her so we are also trying to teach her to keep it in her mouth more!! It sometimes feels that nothing is easy but then I think of how much harder other people have it and realsie we need to count our blessings. We are still doing three physio sessions a week and hoping we will soon see the results- it’s a slow process but one that is so worth persuing.
My sister had a baby last week so it has been quite an emotional time as I went to visit her on the Maternity Ward where Sydney-Mae was born. It bought lots of unwanted memories back. I am so happy for my sister that little Tianna Marie is healthy and doing great and she is one beautiful little girl. We are also busy planning The Sydney-Mae Fund 6-A-Side Football Tournament and Family Fun Day and are hoping it is a success and we raise lots more money so we can keep up the good work- if you are in the area pls pop along and support us (more details on the Fundraising Page).
Aimee x
June 4th, 2009 by aimeem
Hi all,
Well this has been a bit of a pants week all in all to be honest! I started feeling unwell last Wednesday and here I am still lying in bed 8 days later having been signed off work with a Viral Infection! Last Thursday Sydney-Mae’s face became very swollen- her cheeks and above her eyes. I called NHS Direct who after asking a million questions advised that they thought it was nothing to be concerned about but to just keep an eye on her. Within a few hours she became even more swollen so at 21.20 we took a little ride to visit the Emergency Doctor…………..
The Emergency Doctor said that he didn’t know what was wrong with her- could be teething or it could be allergies which is unlikely. I (being the anxious wreck I am) asked if it could be Seizure Activity expecting the Doctor to laugh in my face, only to be told “not isolated no, however it could be if she had displayed other symptoms e.g. jerking, extra sleepy etc”. Of course this then put me on Seizure High Alert presuming I had in fact missed all the other signs! It really is horrible when you are in that state of mind as you can almost make yourself see things that aren’t actually there. Touch wood thankfully all seems ok.
On Saturday I not only noticed she had cut two more teeth but I also saw she had Thrush in her mouth, poor little thing. It is safe to say she has been a little cranky this week and crying a lot more than usual but who can blame her?
Her MMR is due tomorrow but we have had to delay it due to her being unwell- phew! When Taylor was one year old there was all the hype in the press about the possible link between the MMR Injection and Autism/Chron’s Disease. I remember feeling a little anxious about him having it but we decided that we had to put our trust into what our then GP was saying and we gave him the MMR. I guess in a way I always thought deep down “that wont happen to us- that kind of thing just doesn’t happen to us”. Obviously I was a lot younger as Taylor is coming up 9 in December and I was very naive! My cousin’s little boy in currently under investigation for Autism and ADHD and of course Sydney-Mae has Cerebral Palsy so I have since learnt that these sad things can indeed happen to me and those closest to me.
I have spoken to a number of professionals involved in Sydney-Mae’s care who all work for The NHS so obviously all are advocates for the MMR injection. One thing they all agreed on was that due to her brain injury she is at a higher risk of suffering from Febrile Convulsions caused by a High Fever after the MMR, so on those grounds alone we have decided to use some of the funds we have already raised and pay £350.00 to have the injections individually therefore putting less into her little body at a time. It was either individually or not at all and we felt we have a duty to society to ensure our children are immunised.
We have now started the Private Physio for an hour twice weekly at home and Sydney-Mae has so far truly benefitted from this and is sitting up for longer periods of time. Once she is feeling better I shall take some photos and add them to this site. We are of course still doing The Scotson Technique and still continue to be excited by her new achievements. This week she has really started to play with her hands- something that in ‘normal’ development a baby would do many many months ago, but Sydney-Mae is now actually holding both her hands together- I think she has finally discovered she has two! I walked in the lounge the other day to find her on the floor lying on her side (again a new achievement) playing with her hands. I left the room and when I came back in she had rolled all the way onto her tummy- a very very proud Mummy moment!
Thanks for checking in again,
Aimee x
