Feverish Baby

Make the most of the Ups and they'll carry you through the Down's

My poor Tali has really had a difficult couple of nights - her temperature has soared up and fluctuated between 38 and 40. I stay by her side and just pray so hard for her fever to break. Last night we called helicopteros sanitarios just to make sure she was ok and didn't need to be hospitalized. They just said to keep giving her parecetomol and watching her - if her situation gets worse, then to take her to her paediatrician or hospital. It is hard to know what to do as we have no diagnosis. We just have to rely on our instincts and follow her lead. Even the medics don't seem to know what to suggest. But between Calpol, Belladona and homeopathic flu remedy, I am hoping to get her back to shape asap.

Thankfully she is eating - although only very little but at least she is staying hydrated. She is a very good girl and barely complains - she looks so tired and when she is so weak, she looks alarmingly skinny. Still, I know she will get out of this. Every child has colds and flus. Unfortunately Tali's muscle tone suffers but we will re-build it up again after this nasty bug has passed. She just needs rest, rest, rest ....so we are housebound!!!

Just keep your fingers crossed that she maintains her weight - we have worked so hard to get her up past the 6kg mark, I don't want to fall back again. If she does, tube feeding will definitely need to be considered. So we're back on the roller coaster!!!

Primordial Dwarfism

Well, I have just seen a Channel 5 documentary, Extraordinary People, Britain's Tiniest Toddlers and my skin is up in goose bumps. This programme aired by Channel 5 is amazing and what's more amazing is that they remind me of Tália. Weirdly too, Kenadie, a dwarf who joins them at a Walking with Giants conference is wearing the same dress as Tália is in the Eye on Spain interview - I am shell shocked, is this a sign? Could Talia have a primary form of dwarfism with mito being a secondary feature?? She seems to fit in with them. Parents of Alex, diagnosed with MOPD 2 have set up an organisation - have a look at it - and please tell me, am I seeing things or does Tália look similar??? See the website - are there more of us with minature kids than we think??? How many people are out there like us but bringing these kids together will give them a social life, a chance to have a community.

Day 3 - Appointment at the hospital

We got up bright and early - this was the big day. I lept out of bed at 5:45pm - after all we had looked forward to this day for months. Each doctor, each new medical institution brings with it new hope, excitement and a little nervousness too.

Perhaps this would be THE DAY - the day when we find out what is going on, the day - maybe it will put an end to the waiting , concern and uncertainty - maybe will get a diagnosis... Or will it open a new can of worms - whatever it is we are moving forwards and we need to do that.

Anyway I got the girls ready and we had breakfast at around 7am before heading to my brother-in-law's house. My husbands parents and my sister-in-law were waiting for us - we deposited our kids with their grandparents and cousin and then my sister-in-law drove us to the hospital. We really are so lucky to have so much wonderful support from the family. Everyone keeps coming together to help us and at least it means that the other two girls can enjoy their holiday. Despite the anxiety - this is one of the most beautiful things that has struck me at this difficult time - I have received so much strength and support. Friends calling up - even acquaintances that I barely know come up tome and offer to help; Talia beautiful toothy smile and warmth attracts people from everywhere. Her drastic small size alongside her adult expression and questioning eyes attact attention from everywhere.

The hospital was really very nice - very well done up and professional looking - quite different from the Spanish equivalent. The hospital was huge and spotless - I know that you should never judge a book by its cover but regardless the efficiency and cleanliness did help me to relax. This alongside my sister-in-laws presence was very soothing.

We were seen quite quickly - my husband and I are used to spending hours at hospitals - he always brings his computer and sets up a mobile office but this time the wait was quite short and we sat chatting to my brother and sister-in -law.

The Dr was very professional. He gave us lots of time and attention. He already knew what to expect as he had studied Talia's results and photo prior to our visit. After a thorough examination and full patient history, he explained that he had expected Talia to lookk more 'syndromey' - she looked better in the flesh than in her photos. apparently her facial muscles seemed more droopy in the photo but here in person she seemed to have better muscle otne in her face. His main concern was her weight - she is way under the charts and is diverging from the norm rather than converging and this troubled him.

He finally looked at us with a frown on his head and a look of concern - he was kind and empathetic and obviously what he wanted to tell us was tough and he did not want to be the bearer of bad news.

Anyway he said that we needed to check her brain development. He was concerned that the 26 week bleed had caused gross damage to the brain and felt the next step needed to be an MRI scan. We discussed this and then he agreed to call us that afternoon with an appointment for early on in the following week.

My husband and i came out in a daze. Thankfully his brother and my sister-in-law were with us. We were strong but I could feel the tears welling in my eyes. One side if me wanted to ball my eyes out and the other side of me just kept saying,'you're fine. Look around you. You are so lucky - you have two beautiful girls and this gorgeous baby - don't give in'. Then I tried a yoga tool called 'Pracktipakshabhavana´ -replacing negative thoughts with positive ones. I thought of numerous cases that I knew of - parents with twins who were both severely handicapped and where the parents couldn't even afford a pram, children dying and living in war zones and I also thought of many kids who do suffer brain damage and still manage to have relatively good standards of living. Deep down I know that we will play with whatever card we are dealt and that we will cope no matter what. Nevertheless it was an emotional day and my heart felt heavy - I had a dull ache in my heart. I looked into my husband's eyes and knew that he felt the same - we are in this together.

Our family were fantastic and I was pleased to get back to my mischievous kids. We stayed with my sister-in-law until after supper - we needed the emotional support that the family were providing for us

Maxijul -a boost of energy

Patience is a word that keeps creeping up -yet its so hard to watch your baby and be patient. A mother child bond is so strong and a mum's desire is to do whatever she can to ensure her child is ok. In December after our first visit to Materno, we went to visit another doctor based in Gibraltar. So many friends had recommended him. Whilst he was as baffled as the other doctors and saw ´Talia´s case as an interesting one, one thing he introduced me to was Maxijul - a supplement that can be added to food and drink - really it is made up of glucose units and is often offered to patients suffering from chronic illnesses, malnutrition and lacking in energy and calories. I decided it was worth a try and started adding one teaspoonful to Talia's main feeds.

Baby Talia

Well its been a while since I last posted in my blog and that´s cos its been quite a tough time for me. As you will know if you have read this blog, I was on bed rest cos Talia wasn´t growing within my womb. I don´t know what went wrong but it seems to have all started at 26 weeks when I was on holiday in HK and bled substantially - since then baby´s size and rate of growth was a problem. All seemed more or less ok for the first 6 weeks of Talia´s life - she was putting on weight and appeared to be thriving, but then she started to miss key developmental milestones and since then I have been trying hard to find out what she has and how I can help her.

She is a beautiful, gorgeous baby but at 7 months she only weighs 4.45 kilos (with clothes on!). She eats and sleeps but does not grow.

I am going to go back and post what has been happening, the research I have done and the doctors I have seen in the hope that women in a similar position in Spain can hopefully learn about the system etc through this blog. I also hope that anyone reading this who recognises signs or symptoms can contact me or comment and help me to help my darling Talia.