Talia makes a quick recovery

Talia's skin biopsy went fairly smoothly yesterday - she was a real star - barely cried and even though they thought she may need stiches managed to get away without any. Today the wound had stopped bleeding and by this afternoon she started looking more alert again. I must say that I am relieved that we wont be getting any results for 2.5 months as it means that I can just focus on an amazing Summer - taking the girls to the pool everyday, doing physio with Talia everyday and just being. A couple of months free of doctors is just what the doctor ordered (ironically).

I have been looking online at different plans (standing supports) and I am amazed at products out there for special needs kids ( see www.jenx.com for an idea). I think the cat model is the one they will select for Talia.

Luckily, the state have given me a prescription and have agreed to pay for it - I have been round so many appointments to get the presciption -first to see my local paediatrician in Sabinillas, and then to Estepona, and then another appointment in Estepona. Once I had agreement from the doctor, the paperwork - prescription, empadronamiento (Talia's), medical card and all had to be taken to the Costa del Sol and then had to be approved by the committee there. However after all these steps I got the prescription approved and now that I understand the state system, I am actually very pleased with it.

Indira brightens up our world

I am so excited! I have a beautiful neice, Indira and she is gorgeous. She was born at 6:14pm and is just a perfect work of art. She is gorgeous - weighs just under 7lbs and is long (50cm). My brother and sister in law were fabulous - my sister in-law went through a perfect natural birth - no epidural. She justbreathed her way through the experience. After a long day (over 12hours at the hospital today), she llooks fabulous. I can't wait to see my little Indy again tomorrow.

Cosy Comfy and swimming with dolphins

Kids are in bed and my husband is watching the football and here I am with my feet up preciously enjoying 'my time'. Perhaps I need a cuppa too, whilst I sit and type and browse through my emails? !

Talia spent much of the day with her granny today whilst I went to a couple of business meetings with my husband and then to buy some little end of term gifts for the kids' teachers. I must say Talia looks great for it. She had a slight cold this morning so I cancelled Speech therapy and Swimming. However when I picked her up she looked really well. Mum had done lots of physio with her - (my Mum and Dad have been a real support for me ). In addition to this, she has eaten extremely well and had two naps. The day in seems to have worked wonders.

I have just looked through my emails and received some lovely messages from people reading my blog - I just want to thank everyone for their supportive messages and useful links. They give me so much hope and support.

Thanks to these messages, I am thinking of trying out a few different things. I have had lots of positive feedback from people who have taken special children swimming with dolphins. Apparently the the healing effects are amazing. I would absolutely love to take Talia - actually I think it would be therapeutic to take the whole family. I have been given some ideas of where to do this so I will make enquiries and post any useful links for anyone wishing to do the same.

I have decided to have a fantastic Summer - I am looking forward to swimming with the kids everyday an dmaking the most of it. After the skin biopsy on Monday, I just don't want to focus too much on medical tests - I think our family just need a month or two of fun! I'll have a new neice soon too - I am so excited about that too.

Topsy Turvy

Woke up this morning determined to call up some doctors and chase them up on bits and pieces - the UK Dr to chase him up on a test that I've been charged for but have never received any results for, Costa del Sol to find out what's going on with the muscle biopsy and Materno Infantil to give latest lactate and spinal fluid results to the neurologist we see there. So, after sending my two eldest girls to school and after feeding Talia a good breakfast. I placed her in her donut to play and started some phonecalls. This donut thing is new - before she couldn't hold herself up in there and I would have to lie her down on cuhions but today she sat pretty well and played with her toys. She is great on her own as it gives her the feeling of independence.

Anyway I spoke to the Dr from Costa del Sol and he told me that they have decided to do a skin biopsy on Monday at the Costa del Sol. He stated that it was est to start with this - it should be just like an injection with a fine needle. He said that with a muscle biopsy they would have not been able to use a local anaesthetic as it can affect the sample and that after what I had told him about Talia's sedation with the MRI she had in February, they decided it may be best to start with a skin biopsy.

I spoke to him and asked him some questions like ,
'Do you think she definitely has a metabolic illness?
'What will we be looking for in a biopsy?'
'Are there curable metabolic illnesses?'
'How serious an illness could she have?'

He was very supportive and answered the questions to the best of his ability - although it was a pretty negative picture. He said that they were pretty sure she probably was suffering from a metabolic problem as the lactic acid in the spinal fluid and blood lactate were elevated, that they were looking at several fairly serious illnesses and the extent that Talia was affected would just depend on exactly what type of illness she had - some patients die in early infancy and others do not get diagnosed until adulthood - so I am just praying Talia's condition is not so serious.

Anyway I also spent time on the web checking out metabolic conditions. I felt stronger this morning and on days like this I choose to do research as most of what I read is pretty awful. However I want to know what is going on and I want to know what questions to ask and regardless of what any doctor says, I am going to do my best to build a good life for my princess.

I recently saw a natural doctor who said that he felt that Talia would struggle through her first five years but be fine thereafter - this thought gives me so much hope. I am not one to give up. Th estories I've heard from friends and physios about miracles that occur everyday - children who are told they can never walk but do, children who survive against all odds, these give me hope.

Anyway, next appointment Monday - I must say that I finally feel that I have a good team of doctors there - they are quite caring and supportive and very professional. If any mum needs help on who to se, please contact me.

Anyway must sign off - girls are singing in a theatre production tomorrow, need ot ensure their clothes are prepared - the joys of motherhood!

We can do it!

Today became a stay at home day - a rare thing for me. My eldest daughter had a high fever overnight and I decided to keep her off school today so hence ended up having to cancel my physio appointment in Aprona. I have a pretty bad cold today so to be completely honest, a day in with hot cups of tea sounded cosy and relaxing. Sometimes the simplest things in life can bring so much comfort and pleasure! Thankfully my daughter's fever seemed to dwindle away and she was all sparks again by midday! After watching part of Harry Potter, my husband whisked her away to see her aunt and uncle and their new baby once we had decided that she probably had suffered a mild form of sunstroke.

I sneaked a short cat nap with Talia and then spent the rest of the day playing and doing physio with her. I put her in her 'plano' ( orthopedic walker ) but she wasn't too straight so I took her out again.

A 'plano' is quite a weird contraption that is made for kids to be held upright without having to put all the weight on their feet. It gives them the sensation of walking and helps to build up their hips and leg muscles. I am still waiting for Talia's own plano so in the interim I am using one that a physio lent to me. Getting a prescription for the contraption is another story in itself - too late and too tired to explain the process now (maybe tomorrow..)but if anyone out there in this area needs to get one, you can contact me and I'm happy to tell you about the procedure ( or as much as I know as I haven't yet received the final product!)

Anyway I tried to get Talia in a sitting position around her new drum and was ecstatic to see that she held the seated position for at least a minute - this is a huge step forward and two weeks before her first birthday. I also took out some small mettalic cars that we got from imaginarium- they are cute little cars in a metal box (actually for age 3up) but Talia uses them at Aprona. It helps her to practice lifting and helps her finer motor skills. However usually the metallic texture makes her pull back as she has hypersensibility in her hands. Determined to get her over this fear, I bought the cars on Wednesday and have constantly been showing them to her.

Today she actually touched and tried to move them - another breakthrough.

We had a great day, we played lots and I read her lots of stories - it was so nice just to be!!! We achieved lots in a chilled way. Oh and I forgot to mention that she loves her new drum (early birthday present) from imaginarium. When we first gave it to her, she looked at it blankly and now she's drumming away like a pro. The physio told me that this was good for her muscle tone in her arms and hands.

My home is looking like a stimulation room - big red ball in the living room, alongside a plano, bumbo seat etc!!!!

Just another Manic Monday Not

Well, I started my day expecting it to be hectic but it was great cos mum was with me and everything seemed more peaceful. I left Talia at home with her while I collected the girls from school with Andrew and that just made life so much easier, especially since I have a terrible cough and a slight cold. Then mum basically helped to reorganise the girls room whilst she ordered me tolie down with the girls. So I curled up with my three princessed and watched a traditional feel good romantic comedy, 'One Fine Day'. The girls were so relaxed and I got to rest a little as I was exhausted.

LaterI brought the girls down for supper and was so happy to see Talia pounding away on her new drum - uptil now she has seemed disinterested in it but today she looked almost professional. When she is so sparky and reacts like this, we feel so much better as she looks like a normal little girl. The other two were generally well-behaved despite squabbling over marbles!

My Talia

Talia is just my gift - so much fun and special - the girls love her so much and together we have a strong bond. I just wanted to say that as the lasts post have been fairly negative but I assure you that everyday has a special moment for me - like this image of me with Talia reading a book.

Talia's teeth

Well, poor little monkey has been poorly all weekend - she started with a high temperature on Saturday whilst we were out celebrating mum's birthday - poormum I really didn't want her to have to think of me on her birthday but she was concerned about me cos I seem to be catching a cold too - I think I just need to have one day at home - I need my bed and some quiet an dsome time to balance myself. My exhaustion is making me impatient and ratty and that's not how I want to be. I want everyday to be special - I really have to work on myself.

Friday Speech Therapy a Disaster

Well - it is really not a great week - lets get it over and done with. Speech was terrible today as Talia refused to respond - alll she wanted was her butterfly rattle and screamed at anything else - she just would not coorperate. However in thge afternoon, I took her swimming with the girls an dshe was in her element - she looked so happy. This is what is important to me, that she is not suffering and that we enjoy everyday to the full.

I can see clearly now the rain has gone!

What a day, what a week. Thursday morning was tough - after such a difficult day before. However a visit to a new physio for additional therapy and my mum's positive nature pulled me up. I had a good cry with mum, and then it was onwards and upwards. The physio was so positive, sure that Talia would walk and sure that she was all there mentally. She was very kind and lent me a plano until I get my own ( like an orthopedic walker to help build up her leg muscles). She also lent me a Bumbo seat which Tailia loves. I went to mum's after - just needed to be under positive influence - also needed to sleep - felt emotionally exhausted.

The Dr from Costa del Sol called and told me that they did find elevated lactic acid in the spinal fluid which was not what I wanted to hear but at least everything is just elevated and not sky high - elevated can mean borderline.

Ups and Downs - what a week

This week has been tough, dare I say. I guess I am just a little exhausted between physio three times a week, swimming twice a week, speech therapy twice and then there's the other kids, the meals, the home and the business - trying hard to balance the balls but hit rock bottom when I ran out of nappies last Sunday. How on earth can that happen - I felt so frustrated that I had forgotten such an essential thing! Sometimes big things don't get you down - its the little niggles that tip you over. But hey, I'm upright again (well more or less). Other mums going through this will know how I feel (I hope). There are good days and bad days - days when I can walk around with a bounce in my step and days when I feel I am living a dream.

On Wednesday, we were due at Materno Infantil again - yep my favourite place. Its crazily chaotic - so many kids needing attention. The hospital is reknowned for being one of the best pediatric units in Andalucia, yet the decor and surroundings are pretty shabby.

We left at 7:30am on Wednesday morning from Mum's home as my parents took the girls to school for us so that we could head to Malaga. At 9:40 I get a phonecall to say my 10am appointment is cancelled and to just turn up for the 12pm one. So two hours to kill in Malaga with a tired baby!! My husband walked around in mobile office mode speaking to clients, negotiating deals and running the business. I used the time to get some of Talia's b-day pressies ( will be 1 in two weeks!) and buy my eldest daughter a much-needed bathing costume.

Once at Materno we waited patiently for our 2 appointments - one at 12pm and the other at 12:10pm. We got in to the first at 1pm - it was fairly run of the mill. TAlia weighed 2.670kg and height is 62/63cm. Anyway after that we were rushed off to the neurologist. This was the appointment we were supposed to have at 10am but apparently th esecretary cancelled the wrong doctors patients so we could have turned up at 10am - what a mess. Anyway the Dr looked at the brain scan that we had from the UK and concluded that she saw some retardation in the myelinization of the brain - something the DR at Costa del Sol had mentioned to me. She said she suspected a metabolic illness. We then opened up to her and said that we were undergoing tests in the Costa del Sol and that lactate levels were high - an indicator used in metabolic conditions. She was in agreement with our Costa del Sol Dr and felt that we needed to do a muscle biopsy.

What she said actually was pretty scary and uncomfortable. She said that whilst some metabolic problems could be cured, the majority were extremely complicated and progressive an dwhist our daughter was progressing, this could just suddenly stop. To be honest, I felt quite ill. But at the back of my mind i kept telling myself - this is all guess work, nothing has been proved and she is getting better each day. Anyway we should do the muscle biopsy as it may be curable but we need to move fast as any damage to date cannot be erradicated but future damage can be avoided. So now I have this little bee inside me that wants to move so fast but you know what a process like this is like. I am just one mother fighting her corner.

We t hen went on to see an endocrinologist who agreed that metabolic illness was a concern - however the digestive unit did not think that the figures were elevated and that she would just need growth hormone - I pray that they are correct.

It was quite a day and we arrived back emotionally exhausted - just days ago we thought Talia looked great - now she may have a grave illness. We need to be strong and positive as that is the only way through this.....

Back to Spain

The rest of our UK trip was a whirlwind - the days following the brain scan were filled with trips to the geneticist, neurologist for further opinion on the scan and a few trips to a laboratory for bloodtests. My poor Talia -constantly poked and priked. Taking blood was traumatic as she was still bruised from earlier tests and she was not well hydrated. Well to cut a long story short - we are back in Spain and are still seraching. The last few months I have just been focusing on physio, swimming and speech theraphy. We are at Aprona everyday now and are working hard to build up Talia's muscles. The geneticist has come back with results and so far all genetic testing is fine however he has pointed out that Talia's lactate levels are high, suggesting that there may be a metabolic poblem somewhere. Further to these findings, I called Materno Infantil who do not think the elevation is significant - however after Talia lost 100g a couple of weeks ago, I decided to go back to the Costa del Sol and re-visit a doctor I saw there in November. To be honest, the service I have received there has been far superior to the servicein Malaga. Yesterday they repeated the lactate test and within an hour had the results - incredible!! Unfortrunately it is still high and this means that we need to do further testing in terms of a muscle biopsy. Apparently there are only two places in Spain that do this so we may have to head for Barcelona.

The doctors yesterday were fantastic andthe nurses in the Costa del Sol were playing with Talia. There were about 3 doctors watching her and they even tried to analyse a new test that they have never done before - for once I felt as though somebody cared here in Spain. Finally I could see a team coming together.

The doctors also took spinal fluid yesterday - they did a lumber puncture. They warned me that Talia may suffer from headaches and backache afterwards. We were sent outside to wait as they needed to concentrate without us around. It is so difficult to watch your child suffer - I feel emotionally exhausted.

Last night was awful, Talia cried lots and was obviously in excruciating pain - I was beside myself as nothing would calm her. Ithink that holding her only worsened the back pain. Eventually we put on my mum's deep relaxation CD and within 10 minutes, Talia was asleep. We repeated this a couple of hours later and managed to soothe her again.

My poor baby - she is beautiful and I hate to see her suffer.

Back to blogging

Well the days go by and each day I have the intention of signing on and writing but life is pretty hectic and full for me at the moment. I am juggling three kids alongside attending sessions at Aprona each day and trying to help my husband by working from home whenever I have spare time (basically after kids go to bed!). Anyway I hope to continue my story and I go back now to our time in the UK. Below is an extract from my diary of a day that still sticks out in my mind - the day of the MRI scan:

Day 6 UK
An extract from my diary

Woke up bright and early today – my stomach was in knots. This was the big day. I prayed so hard. We parents make so many decisions and sometimes the responsibility is terrifying.

Two coffees later, we found ourselves in the paediatric ward of the hospital. We read through numerous text messages from friends and family all sending well wishes and love. These little messages are so wonderful, keeping us constantly aware of the love and support we have. The sky was blue and it was a crisp day – I was longing to go for a walk outside and stroll around with Talia in the pram

My husband and I watched everything and everybody like hawks – we watched the quantity of sedative etc. I was really quite anxious but tried to keep my façade of looking cool, calm and collected – inside I felt slightly sick and jelly-like. Talia was weighed and she is a total of 4.180 kilos.

We were taken into a room where a drip was placed into her hand – this was horrible to watch but luckily the doctor was so professional about it that it was soon over. Talia looked a sorry state with her arm all bandaged up. Luckily the sedative worked quickly and within minutes she was fast asleep. We were given a special machine attached ot her tiny thumb which gave us a reading of her pulse and oxygen absorption level. I watched the screen and refused to take my eye off it.

Seeing Talia sound asleep, the nurses managed to bring our appointment forward to 10am. I was allowed into the room with her during the scan and after answering a few questions I was allowed in. We had to lie Talia on the bed and cover her ears with special headphones. MRI scanners make a very loud noise and this is why Talia, myself and the nurse all had to wear headphones. The room felt cold and icy – thankfully, I had brought Talia’s snugly blanket.

The scan was, thankfully, over quickly. I just kept praying visualizing, my grandfather, great uncle and Guru watching over Talia and protecting her. She looked so vulnerable.

Now I’m back upstairs sitting next to my Talia waiting for her to wake up. I have never been so desperate for her to wake up before. The doctor has just come up to see us and says that he’ll get back to us later this afternoon regarding the results and how to take all this forward.

13:15 – Here we are still waiting for Talia to wake up – she is still sleeping and Andrew and I are a little nervous – her eyes are starting to flutter. My husband has just spoken to my mum and she is doing some ‘Om trayam bhagams´ ( Sanskrit mantra for Talia’s well-being and protection) with my sister in law. I really don’t like this sedation – I just want my smiling Talia awake again – she has been under 9ish.

21:00 Talia finally woke up around 16:30 much to our relief – we were worried we would have to stay at the hospital. What a day it has been, I am emotionally exhausted. Thankfully we are staying with my brother-in-law – its good to have supportive family around. My sister-in-law has just been a pillar of strength and has kept my other two girls busy – they have had a wonderful time – walks through the parks, playing with squirrels and sleepovers with their cousins. The doctor came back with the results and much to our relief there seems to be no gross damage. Despite the latter, he would like us to see a specialist neurologist in Harley Street tomorrow. Right now, I am so exhausted and need to lie and watch my baby.

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

UK Diary - day 2

Nice day - no doctors planned so we can ease ourselves into being in London. Got the girls ready and we had a leisurely breakfast at the hotel - an eat as much as you like breakfast buffet... O-Ooh -there goes my diet! I need to lose weight but when faced with 'already paid for' breakfast - one needs to make the most of it, don't they? I mean it would be wasteful not to do so - wouldn't it. We decided we would have big breakfasts and dinners and light lunches (if at all). This decision meant that I wholeheartedly threw myself into my breakfast - adding in extra for energy!

Spent the morning walking to Covent garden (15/20 min walk) and Oxford Street. Bought a few bits and pieces - nothing very exciting. Had a quick soup and then headed to my sister-in-law's house for tea and an early supper. Was lovely to spend time with my sister in laws and their kids. As soon as the girls got there - they disappeared with their cousins, only to be seen again when it was time to leave.

Went to bed early, exhausted and thinking about what the day ahead held in store for us. We would be seeing a Paediatrician in the morning .... what lay in store for us????? Would we finally be closer to having an answer for Talia. Before sleeping we made the following list:

Key Questions

1. Do you think this is neurological, a syndrome or metabolic?
2. Does she need an MRI? If so what are the pros and cons? Are there any risks?
3. Is her TSH abnormally high - could she need treatment for hypothyroidism?
4. If she goes on like this weight-wise what can we do? How can we maximise her calorie in-take?
5. We have looked at some syndromes, e.g. Prader -Willi, William's - does she look that she could have one of these?
6. Could she have a dairy intolerance? Should we be trying other milks - such as Almond?
7. We have been using Maxijul - how often should we be using it?
   
8. Should we be giving her vitamins?
   
9. What can we expect in the future?

Symptoms and History

1. Weak muscle tone (hypotonia) especially her hands
2. Low intake of liquids - diapers are rarely wet
3. Problems taking a bottle but takes breast fine
4. Weight issues (failure to thrive) - weight leveled off and actually lost a little over last month
5. Born small - 2.320kilos, Height - 45cm, via c-section as she was breech
   
6. Weight gain fine for first 7/8 weeks
7. Dribbling when exerts energy (but could also be due to teething)
8. Delayed developmental milestones
9. Small head but in proportion to overall body
10. Suffered reflux - first 3 months
11. Choked in August (slightly) - could this have affected her

Pregnancy

1. Bleed at 26 weeks
2. Bad flu and prescribed antibiotics at 32 weeks
3. Partial Bed rest from bleed till end of pregnancy
4. Intrauterine growth problems in womb after bleed. Baby grew at a much slower rate

Feeding (typical day)

1. Early Morning - couple of oz (40-60ml) milk
2. Cereal with milk or fruit with milk - 125ml (max)
3. Lunch - 125ml of veggies or rice with chicken etc, often followed with a pudding (yogurt, fruit etc
4. Dinner - 125ml food and sometimes a pudding
5. Milk before sleeping - about 60ml