Bellagio Dove

Results and a special birthday

2012-02-14T11:00:00.000+02:00

Our trip to Cape Town for Bella’s EEG and MRI went ok. It was very stressful and she hated it, especially all the sedation she had with Chloryl Hydrate. Her MRI came back completely normal which means the last MRI we had was correct. The one she had when she was 1 year old showed possibly Polymicrogyria but the doctors say that it was just her ‘developing brain’ and you can’t read too much into MRI’s when a child is that young. So as it stands now she does not have cortical dysplasia. The questions is then, what is it? I doubt we will ever know.

Her EEG also came back completely clear which means the staring spells we have seen are not seizures and the abnormal / spiking activity we were seeing last year has no settled with the increased Tegretol dose and the change from Tegretol liquid to Tegretol CR tablets. We are not going to do the Modified Atkins diet and we may in fact decrease her Keppra a little bit. She has been doing well at school and has now moved from matching objects to matching pictures. She is also working on a PECS communication system where she will hand over a picture to indicate what she wants. We haven’t seen this at home yet but she is very good at taking our hand and leading us to where she wants to go and what she wants.

On Saturday 11th February it was Bella’s 4th birthday. It’s quite hard to believe she is already 4 years old. She wore a beautiful pink party dress that her Great Granny gave her and loved all the attention, especially when we sang Happy Birthday to her (repeatedly)… We are having a combined birthday party for her and Leo in March when Grant gets back from his trip to Russia. Bella has also started swimming lessons. She loves swimming with her Bentley belt so we decided she needs to learn to swim on her own no matter how long it takes.

Bella mesmerised by the candles and the singing - excuse the photo quality from my phone

Bella in her new party dress

Max and Leo are both doing well. Max has been in Grade 1 for only a month and I am amazed at all the words he is able to read already. He is like a little sponge soaking in everything. Leo is also developing at a rapid rate and is very close to walking and has learnt to wave. He puts his hand up in the air and if you give his hand a ‘high five’ he laughs hysterically. It is very cute.

MRI and EEG this week

2012-01-23T11:07:00.000+02:00

We are going to Cape Town on Friday for Bella’s tests. We are having another MRI to see if we can find the mysterious cortical dysplasia which seemed to have disappeared in her last MRI (November 2010) as well as 24 – 48 hour EEG. The purpose of the EEG is to see if there is still ‘abnormal activity’ and to see if we can catch one of her staring spells on EEG and see if it is a clinical seizure or not. The plan is to switch from Tegretol to Epilim if it is a seizure as Tegretol is contra-indicated for absence seizures. We will also probably be starting her on the Modified Atkins diet to try normalise the underlying epileptic activity. It’s going to be stressful trip but I am pleased we managed to book it early in the year and to hopefully get some answers and a plan of action.

Anyone with experience with Modified Atkins diet, I would love to hear about it….

I hate Epilepsy!

2011-12-22T09:55:00.000+02:00

Bella really did well in her last few weeks at her new school CARE. I was disappointed to have to stop for the Christmas holidays but at least we got a good 6 weeks in at CARE before the holidays. Hopefully she can take up exactly where she left off on 1 December – her Dads birthday. And what a birthday present she gave her Dad. At school she had the speech and occupational therapist working with her at the same time. They had her on a swing which she loves. Movement is very motivating for her. They we were swinging her and then stopping and prompting her by saying “Ready…. Steady…..” and waiting for her to verbalise for “…go..” to get the swing moving again. And she did it, repeatedly.. She didn’t say a perfect “go” but she used the “g” sound at the appropriate time. This is huge that she used sounds purposefully to get what she wanted. I hope this means that the gate to talking might be opening even with just a little crack. Because once it starts opening hopefully the gates will eventually open WIDE!!!!

In seizure news… Hmmm. As I mentioned previously we started weaning Tegretol last year and the EEG we did in May showed epileptic activity, although she hadn’t had a clinical seizure. So we increased Keppra and a follow up EEG showed some improvement. We increased Keppra again and the next EEG didn’t show any more improvement. So we then increased Tegretol again and changed from the liquid to the controlled release tablets. She seemed so much better so I really expected the follow up EEG to show improvement but alas still no more improvement. The EEG still showed activity although much better than the EEG in May. So her Neurologist said we should leave it as we shouldn’t treat the EEG and only react if she is having clinical seizures. For quite a long time I’ve noticed that she often stares into space and we have never known if this is a seizure or not. I was told by another Neurologist that when this happens to blow in her face and if she reacts then it’s not a seizure. I’ve done this and she does react. But I still wonder if it’s just so quick that if by the time I blow in her face its already over. Anyway after more discussions with her Neurologist we have decided to take her to Cape Town early next year to a well respected Epilepsy lab there to do a 24 hour Ambulatory EEG to see if we can get a staring spell on EEG while she is awake. All her previous EEG’s have been while she is asleep under sedation. Then we can make some better informed decisions. I HATE EPILEPSY!!!!

Photos.. finally

2011-11-17T12:57:00.000+02:00

Leo caterpillar crawling

Bella looking pretty in her new costume

Bella and Leo playing together

Max and Leo fall asleep in my car

Max gets his yellow belt for karate

Bella enjoying a wagon ride and looking pretty

Max in his big school blazer for 2012

Whats been happening ....

2011-11-11T10:28:00.001+02:00

Bella has settled nicely into her new school and is even going to school without her nanny. A huge step for both of us! So every day she is receiving ABA therapy, speech and occupation therapy. My view is that she will flourish in this environment which is so rich in the appropriate stimulation for her. We’ve noticed that she is more focused and also understanding more which may also be due to the increase in her Tegretol dose. We’ve decided (in conjunction with her Neurologist) to try to treat these abnormal spikes in her EEG even though she is not having clinical seizures. The reason being that her EEG was normal before we decided to wean the Tegretol and now it is not. Her last Tegretol blood level was in the very low therapeutic range so we have now increased her dose to around 23 mg/kg/day. We are doing follow up blood levels and an EEG on the 28th November.

Some new and cute things Bella has done:

• Respond to the command to “give” something by putting it in my hand

• More unprompted use of the “more” and “food” sign

• On the weekend she while I was getting dressed she went, unprompted, and fetched some clothes which she gave to me. HUGE!!!!

• Copying simple actions in speech therapy

Leo is such a darling and developing so quickly and easily. He is very mobile with what I call his caterpillar crawl where he pulls himself up on his arms and then lurches forward and repeats this over and over. Once he starts crawling properly there will be no stopping him!. Bella loves to play with him and observe him. It’s very sweet. Was trying to add a picture in here but seem to be having problems with blogger and pictures AGAIN!!

In othere news Max got his yellow belt for karate. They grading 'exam' was so special and he was pleased with himself when he was awarded the yellow belt. I've got such a cute picture which I wish I could post.

This post about ghosts is one I can really identify with sometimes...

A stunning daughter

2011-10-20T12:39:00.000+02:00

Bella has now been at her new school C.A.R.E for one week and it has gone really well. She seems to have settled in nicely and is exhausted when I fetch her which is a good sign that she is being stimulated a lot during the morning. The OT at the school said and I quote “You have a stunning daughter and I loved working with her. I feel that she has such potential!” I am so happy she is in an environment where her potential is recognised and challenged.

Max has been doing very well at school, particularly enjoying his extra cricket lessons. His coach said to me I have ‘a little super star’ on my hands. He is still completely devoted to Leo and a wonderful big brother. Just the other day he said to Leo “I waited so long for you”. Too sweet. Leo is also growing very quickly and he is sitting already. Amazing how quickly he reached that milestone. I think he is teething at the moment as he gets quite agitated and likes to rub his gums on my fingers.

I took all 3 kids for a studio photo shoot yesterday so am really hoping I get some great pictures of them. Leo was very cooperative compared to the other two. But I have finally managed to get some photos into my blog so here are some recent ones.

Another blog I have been following about precious Little Miss Hannah has really made me rethink everything about Bella. Hannah’s story could so easily have been Bella’s story and for a time we thought it was. I am so grateful to have my little girl healthy and from now on will stop worrying about the next milestone and just enjoy her as she is. Happy and healthy. My thoughts are constantly with Hannah’s mom and family!

A new approach

2011-10-10T10:46:00.001+02:00

Lots has been happening in Bella's world. To start off with I have completely taken her off the Yasko protocol which may seem like a dramatic thing to do but I have been so uncertain about if ofr months and really questioning if it was the right thing for Bella. She has always seemed so mcuh better when she was not detoxing and then I went back to my blog in 2009 to see what I was writing before I started any biomedical interventions. From what I wrote she seemed to be developing at a faster rate. There may or may not be any link but I felt it warrented a trial period off the Yasko protocol. So lets see what the next 3 months bring us. I am taking her to a homeopath and a Viral doctor, Dr Cecil Jadin, this month as I still believe her rotavirus vaccine had a lot to do with her seizures.

I have also not been sure what is the best thing to do about school for Bella. She has been going to a mainstream playschool since the beginning of this year and although it has been great from a socialisation persepective she has not been getting individual attention which is what she really needs. A new special needs school has opened up called C.A.R.E which sounds like it could be ideal for Bella. We are going to meet the Principal this afternoon to discuss Bella and whether or not CARE would be good for her. I am really excited about it as I think it could really be great for her and her speech and language development. They also have ABA therapy at the school which will be fantastic.

I keep trying to add photos to my blog and it just 'hangs' in the posting editor when I click on the icon to add photos. Does anyone have any suggestions?

Speechless

2011-09-19T12:55:00.000+02:00

Well I have now been back at work for nearly 3 weeks and I can’t say I am loving it. At least it is only until lunchtime as I miss Leo terribly!

Bella and Max are back into the swing of things with the new term of school. Bella had her Grandparents concert at school on Friday and she loved it and managed to sit through the whole thing. Unfortunately no parents were allowed so I didn’t get to see her in action. Her end of year concert is at the end of October which will be fun to see. We have decided to leave her at Plumtree for another year rather than move her on to a bigger pre-school. We feel that she will do better in the smaller environment for another year. I was actually hoping for her to go to the Talkshop next year but the kids that go there have to be talking a little bit. Which she isn’t. Gosh, I would love to know what is holding her back with speech and communication L Will she ever talk??? Does anyone have a child who started talking really late??? I have scheduled a call with Bella’s speech therapist tonight so maybe she will give me some insight. Hopefully!

Back at work and on the blog

2011-09-08T11:35:00.000+02:00

This update is even more overdue than the last one. I have already finished my maternity leave and started work on 1 September. Leo will be 6 months old tomorrow. Crazy how time flies. The last few months have been fantastic and so different to my maternity leave with Bella which was spent mostly in hospital and in Doctor’s rooms. It was wonderful to just enjoy a healthy baby and as a result I spent very little time blogging but only managed to keep up with the blogs I follow.

While I was on maternity leave I also started my own business. I opened up an exclusive children’s toy shop called Chasing Fireflies. I have employed someone to run the store for me while I am at work so my day to day involvement is now just on the buying and accounting.

We have had lots of news and development with Bella since I last updated. We had been slowly weaning Bella off her Tegretol and took her for an overnight EEG in May. Unfortunately it showed some epileptic form activity in her right temporal lobe. All her EEG’s for the last few years have been normal so this was quite upsetting. Her Neurologist decided to increase her Keppra and to do another EEG in June. The EEG in June was much better thank goodness. It still showed some “abnormal” activity but not epileptic activity in the right temporal lobe. Her Neurologist increased the Keppra a bit more and we did another EEG in August. In the meantime her Neurologist thought she may have a focus on her brain. The EEG in August was done by another Neurologist (for a second opinion) and again showed “abnormal” activity but this time in the central temporal lobe which he said meant she does not have a focus but rather a generalised epilepsy. He said the “abnormal” activity does not need to be treated and we should stay on the current dosage of Keppra and Tegretol. He felt that she may have a Channel Disorder but they only way to do this would be via genetic micro array analyses. These are not available in South Africa so we would need to find an overseas research laboratory who would be willing to do it for us. Is it worth it? I don’t know!

In the meantime we have been carrying on with the Yasko protocol. We went on holiday to Mauritius in August so I decided to give her a break from most of her supplements and just kept a few of the key ones on board. I don’t know if it was coincidence but she seemed much better with no signs of detox and now seems to be doing better in terms of understanding and getting glowing reports from her therapists. She is more focussed and her understanding of her environment seems much better. I am now in a dilemma as to whether push the Yasko protocol again, because in theory the more detox the better her future development, or to give her a break and let her consolidate with this current developmental spurt. Any ideas or thought from anyone especially anyone who knows the Yasko protocol?

Leo and Max are both doing very well. Max is besotted with his little brother and takes every opportunity to cuddle him and love him. It is very special to see. I have just loved seeing Leo develop and grow, although it has sometime saddened me to see how easy some things are for him compared to Bella. I try not to compare but it is difficult not to.

I tried to post a picture of Leo here but am having problems with blogger so will try again next time.

Long overdue update

2011-04-26T20:39:00.001+02:00

This update is very overdue. I will try do a good post on what has been happening in the last few months with the most recent news first.

The first MAJOR news is the Bella is WALKING UNASSISTED! On 22 March she just decided she could walk. For months now she has been walking holding my hand for minimal support but just did not have the confidence to let go. Now she has and she is a natural. She is still a bit wobbly but can speed up, slow down, turn corners and stand still. We are ecstatic!

Leo Grant Nader was born at 38 weeks weighing 3.8kg on Wednesday 9 March via an unplanned c-section. I started having contractions at 36 weeks and according to the scan he weighed 4kg which is why the Doctor recommended a c-section. When he was delivered the umbilical cord was wrapped twice around his neck.... Scary!

He is a very easy contented baby. Here is a picture of him at 2 days old .

This is Leo just after birth when he was placed on my chest. Look how he is holding on to his Dad's hand.

Here is our old spare room which was converted into a bedroom for Leo. I just love how this room turned out.

We had a photo shoot done by Grants Aunt Janet at home. I just love how this picture turned out of Bella and Max on the trampoline. It is such a natural picture which just captured the moment perfectly.

Bella started school this year at a school at a mainstream nursery school. Her nanny attends school with her and she is just loving it. I am sure a lot of her development over the last few months has been due to the stimulation at school. Bella also turned 3 years old in February. Here is a picture of her on her birthday at school where she had a birthday ring. Everyone in the class sang Happy Birthday to her. She loved it as can be seen by her face in the picture below.

Because we had to use the cot etc for Leo's room we gave Bella's room a makeover. Here is a picture of her big girl 3 year old bedroom with a double bed so we can lie with her at night. It was a big move moving her out of our bed.

I tried really hard to make a perfect GFCF diet birthday cake for my birthday girl.. It didnt turn out too badly. It tasted really good and looked pretty other than the big crack in the middle which I covered with flowers...

Max started big school! Here is a picture of him on his first day at school in January wearing his uniform. I cant believe how quickly he is growing up. He has had a really good first term at school and is loving his baby brother who as he says 'is just what he wanted'. Love you Max my boy!

This is a brief summary of the last few months. I am now on maternity leave so will be able to update more regularly.

Take care
Cath

I'll be back

2011-02-16T20:57:00.001+02:00

I have been so hectic finishing up at work. I am due to go on maternity leave next week at 36 weeks and will be on maternity leave until 1 September. I promise to do a full update next week on Chrsitams, Max starting big school, Bella starting school, Bella's birthday and our progress so far with our biomedical interventions with Bella. Until then....

Cathy

A Special Mother by Erma Bombeck

2010-12-23T16:36:00.001+02:00

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instuments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger. "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marjotie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew."

Finially He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asked the angel. "I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I believe in her.

This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't seperate herself from the child occasionally, she'll never survive.

Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miricle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

And what about her Patron saint? asked the angel, his pen poised in mid-air.
God smiles, "A mirror will surfice."

Bella and Max horseriding pictures

2010-12-03T09:11:00.002+02:00

Max having a riding lesson. This photo was taken just a few minutes before he fell off for the first time. The quality of these photos is not great because they are cell phone pictures. The pictures below of Bella at her horseriding therapy with her NDT Physiotherapist with her on the back of the horse. She looks super chuffed with herself.

Doctors and their 'scan's' , another summer holiday and another boy

2010-11-23T15:19:00.004+02:00

We have had two major scans with results that are different to previous scans. The first one is big news. Bella had a follow up brain MRI scan last week. Her previous MRI scans done in Feb last year (1 year old) and in May 2008 (4 months old) showed delayed myelination and cortical dysplasia / polymicrogyria. This scan showed normal myelination and NO LESIONS / NO CORTICAL DYSPLASIA. Basically a normal scan. So what does this mean???? Her neurologist says the only explanation is that the initial diagnosis was wrong. So what is her diagnosis then? In addition her head circumference has jumped from the 25th percentile to the 50th percentile in the last 6 months. Since she was born she has moved along the 25th percentile and now she has suddenly jumped. My only explanation is the feeding of her brain via the biomedical DAN protocol. After further analysis of her OATS test results it looks like she has a Methylation issue. We have sent off more blood and urine samples in the meantime to repeat her metabolic testing (especially now that she doesnt have a diagnosis of Pplymicrogyria). I am also looking into Dr Yasko's nutrigenomic approach. Does anyone have experience with this?

The second scan to give us surprising results was one that showed that our new baby on the way is in fact a BOY not a girl. When we went for our 18 week scan (1 month ago) with the fetal specialist it was very evident that the baby was a boy. It was a bit of a shock but we are delighted and Max is super excited to be getting a brother . He is also adamant that he knew it was a boy all along and "told me so" and really wants us to name his new brother Cooper. Hmmm....

A few days after the baby scan we went on a two week holiday. One week in Umhlanga and then one week in the Drakensberg. Last year when we went to Umhlanga Max was a bit scared of the waves, but this year he was completely fearless and wanted to go as deep as possible. Bella also loved the waves and loved standing in the not so shallow sections and watching the waves knock into her. Here are some photos of our time in Umhlanga...

Bella relaxing after a long morning in the sun

On our long hike in the Drakensberg mountains with Grant carrying Bella the whole way

Max looking uber cool on our patio

{When I try add more than one photo in the new blogger format my computer hangs, does anyone know what to do?} 30 Nov: Well as you can see I managed to add more photos after I deleted my 'cookies'.

Bella is so close to walking... I am really hoping she is walking by her third birthday in February so she can wear this pretty dress I bought her. I know its silly but the dress is just so pretty and she cant crawl in dresses. Max is has got a memory like an elephant, just this morning he told me 10 digit cellphone number which he knows just from hearing me repeat it..He is definitely ready for big school next year even if I am not. On that note we are going to Bella's school for next year's open day on Friday. Very excited for her.

Its a girl!!!

2010-10-09T18:38:00.002+02:00

We went for our 16 week scan at this week and we found out we are expecting another beautiful little girl. We are so excited and Max quite likes the idea of being a big brother to and having to protect 2 little sisters.

I've still got so much so much stuff from when Bella was a baby and since they will only be 1 month apart in terms of being born in the same season I will really be able to use a lot of Bella's beautiful clothes. Though I have already bought one or two tiny things for my new little girl. I've also decided that I would like her to share a room with Bella in the beginning, but that is really only in name because she will sleep with me.

I met another Mom last weekend who has a beautiful little 3 and 1/2 month old girl who was having seizures. Luckily she was admitted into hospital this week and the doctors picked up Hypsarythmia on her EEG and started her on ACTH before she had developed full infantile spasms. Her other seizures stopped after 1 day of ACTH treatment which is amazing I think. Hopefully this means she will make a brilliant recovery.

In other news we got Bella's test results back from the lab in Paris. These were tests requested by her DAN doctor and included a Organit Acid Test (OATs) and a Neopterine profile. These tests came back withs some interesting and disturbing results but at least now we have some more direction with the biomedical approach we have been taking. Up until now we have been doing the GFCF diet and basic supplementation. The OATS test showed a Carnitine, B6 and Folic Acid deficiency so we are working on those immediatly. Its quite strange actually because these are the exact 3 supplements she was on when she had just started the ACTH treatment in 2008. Since then we have stopped them and now it seems like she does need them. I am going to have a discussion about this with Bella's neurologist when we see her on 15 November. Bella's Neopterine levels were extremely high indicating chronic inflammation and /or immune system dysfunction. This doesnt surprise me given that she was on ACTH for 8 months but I also wonder how much the bee sting when I was pregnant and the measles vaccine in July had to do with this. We are going to treat this with Glutathione via a nebuliser. Our DAN also suggested putting Bella on the SCD diet but I am not sure what milk we will give her in her bottle. I also want a referral to an immunologist or neuroimmunologist to start looking into this in more detail. If anyone has any experience with these kind of issues please let me know.

Next week friday we are off on a summer holiday again, one week at the coast and one week in the mountains. I can't wait!!!

Can you spot what is new on my blog?

2010-09-17T16:41:00.002+02:00

Eye examination

2010-09-14T16:47:00.001+02:00

Bella has had an intermittant squint for the last year or so which we have been monitoring. Today we went for a check up and it has improved a lot and she only as a 5 degree squint in the right eye which does not need surgery or glasses but some patching therapy. Her vision is also perfect compared to 2008 where she had Delayed Visual Maturation bordering on Cortical Vision Impairment. Thats my Bella Boo!!!

Please comment on Toys R Us Differently-Abled toy catalogue

2010-08-25T10:28:00.004+02:00

A friend of mine who is an OT is working with Toys R Us on toys for special needs kids. I had mentioned to her my issues with the Toys R Us "Differently-Abled" catalogue and now Toys R Us have asked for some feedback from special needs parents. The purpose of this is to see if Toys R Us and their special needs catalogue is appropriate and caters to the varied needs of special needs kids. Please take some time to post a comment on my blog so we can give our honest feedback to Toys R Us. The type of things they would like to know are what are the strengths and weaknesses of the Differently-abled guide and what would be valuable to us as parents when shopping for toys for our special children.

Please ask all your fellow special needs parents to participate so we can make a difference!!

Please give me your feedback via a comment on this blog and I will be giving the feedback to Toys R Us

Neurologist appointment

2010-08-18T10:22:00.005+02:00

We had our 3 monthly check up with Bella’s neurologist on Monday. She is pleased with Bella’s progress and puts her at a 12 – 14 month old in terms of her development. What I am pleased about is that she put her gross motor, fine motor and speech skills all at roughly the same level. I know in some areas it’s a bit more or a bit less but I am pleased it’s all somewhat on a par. It does worry me that the gap between her actual age and developmental age is slowly getting wider but as long as she keeps on moving forward steadily I am happy.

Bella is so close to walking, I can just feel it. She doesn’t want to crawl anymore and she grabs my hands and marches off to wherever she wants to go. She is now starting to walk with me just holding one hand! We have decided to reduce her Tegretol dose slightly but to not wean it off completely. I am happy with this decision. The last thing I want is a relapse in her seizures.

We are going to do another MRI so we can see how her delayed myelination is doing and get a more accurate picture of the lesions on her brain. I actually found some researchers at GOSH in London who are researching stem cell therapy for cortical malformations . Up until now there has only been research done on stem cell therapy for cerebral palsy so I am quite excited to see what feedback they can give me. I hate to think Bella’s stem cells not being used when they possibly could be helping her.

A cute saying from Max: “Mommy are there herbs in dinosaur land?” … No why?... “then what do the herbivore’s eat?”

Questions...

2010-08-06T11:03:00.001+02:00

As we get closer to spring the weather is getting warmer and I am really looking forward to warm summer evenings, swimming with the kids, green lawns and pretty girlie dresses. Bella is doing reasonably well. Her stomach is not where it was before the tummy bug and measles vaccine but is getting there. She is also getting her bottom molars and is miserable from those. When she is uncomfortable or sick she is a completely different child and really struggles to self soothe. I’m really hoping everything normalises again soon so she can at least look at her iPad rather than trying to chew it…

We are seeing Bella’s neurologist on the 16th of August and we will discuss what to do with her medicine. So far we are dropping her Tegretol dose slightly but Dr T is not keen to wean it off completely and have her on Keppra monotherapy . Bella has been seizure free for 18 months and has had numerous normal EEG’s so when is it going to be ok to wean her of at least ONE drug????? Has anyone been in a similar situation? Dr T’s rationale is that Bella has Cortical Dysplasia / Polymicrogyria as an underlying pathology and suffered severe seizures (up to 30 a day) and it is therefore risky to go from Polytherapy to Monotherapy. I am going to request that we do a follow up MRI now as the last one she had was at 1 year of age. I would like to see if her delayed myelination has improved and if the Polymicrogyria is clearer / more defined now as the last MRI report said, and I quote “There may be a mild form of Polymicrogyria in the….”

I spent quite a bit of time talking to Bella’s OT today. I have been concerned that Bella doesn’t seem to understand much which really doesn’t seem to fit as she is a very curious child, always exploring and playing with new things. She is very interested in her environment and has bright sparkly eye. I often feel that she doesn’t understand anything I say which just seems very strange to me. Bella’s OT explained to me that children with delays in the motor planning ability often appear to not understand anything because they don’t have the motor planning skills to respond but it doesn’t mean that they are not understanding. This is quite an interesting concept. Anyone of experience or thoughts on this? Next week we are doing an intensive OT week with OT every day. This is something I have wanted to do for a while and it just so happened that Bella’s other therapies were cancelled and Bella’s OT had extra space for us.

I have been worrying quite a lot about Bella’s development lately. My worrying seems to go in cycles and I guess I am in worry mode at the moment..

Other news..

It looks like I am off to London again in October for work so I can see Helen. We are also going on a family holiday in October which Max is super excited about!! Max my darling boy, how I wish I wasnt always so distracted and thinking about Bella. I am really trying not to be!

EEG Results

2010-07-22T15:42:00.000+02:00

Bella had her EEG which went ok despite the horrible sedation. She was knocked out for a full 16 hours but was quite chirpy when she eventually woke. There was another baby in the ward you had Measles and was very sick. Our doctor advised us very strongly to give Bella the measles vaccine and I think I did it because of being in the hospital already and being super stressed out. I wish I didn’t do it because it goes against all the work we have been doing from a Biomedical perspective. She also ended up having a reaction with temperatures but otherwise was ok.

Dr T phoned me back yesterday with her EEG results and said it was all clear. Yay!! Her background waves were good and no seizure activity. So now we need to start considering what to do with her anti-seizure medicines.

Bella’s iPad arrives this weekend with the Peacocks all the way from London which is super exciting. I just need to get the Wi-Fi network setup in our house because there are no 3G services for iPad’s in South Africa yet.

I have stopped smoking again… lets hope it last this time.

The 8th of July again

2010-07-07T17:12:00.000+02:00

Last year on the 8th of July I wrote this post : 8th of July 2009

Its that time of year again and in line with true Bella style it will be another auspicious day. We are going into Sandton Clinic for a 12 hour overnight EEG. The purpose of the EEG is to see how Bella is doing and if all is good to possibly start weaning either her Tegretol or Keppra. The weird thing is that it was the 8th of July 2008 that her seizures stopped and we will be in the exact same hospital room as we were then. I am taking it as a good omen but am still quite freaked out about the thought of a trip down memory lane....

Last year Bella sat up from lying down for the first and when I look back to that milestone and where she is now I see how far she has come in the last year. It really is amazing.

My thoughts are of course on little Ruve and her family and hopeful for what the next year brings.

After a 3 month Siesta...

2010-06-25T14:26:00.001+02:00

It has been 3 months since I last posted on my blog. This is aprtly due to being completely hectic and also because I just needed a break. So much has happened so this may be a bit of a long ramble...

Bella's news

Bella has made some good progress in the last 3 months, especially in her gross motor skills. She is pulling herself up against couches and cruising along them. She has even let go with one hand and is cruising with one hand. She now climbs up onto the couch all by herself and knows how to turn around and come down off the couch by herself. I feel that she is very close to walking by herself and so do her therapists.

She is now completely off Phenobarbitone and has been for 6 months. Her Tegretol levels are quite low at the moment but she seems to be coping. We are going to do an overnight EEG soon just to double check everything is ok and then consider weaning her off either the Tegretol or Keppra. Bella managed to catch chickenpox which really worried me because I have not had her vaccinated against chickenpox. We started her on an antiviral immediatly because of her other issues and she coped fine! For a while I really doubted my decision not to vaccinate her but I think all of the work we have been doing on her immune system with the DAN diet really helped her get through it.

I have been a bit concerned about her fine motor and speech development. She has been making progress and is now reaching quite a few of the 18 month fine motor milestones which is really good. Her speech therapist has seen a big improvement in her choice making but I still often wonder how much she understands. Last night she really seemed to understand me when I asked her to put a block into a container and I felt like we had a breakthrough. I am looking into getting her an iPad with either Voice4U or Proloquo2Go which Caleigh has been doing so well with and which Nathan's Mom has found so many other applications which can be used on it. The only problem is that it is not in South Africa yet and no one really knows when the iPad's will be released in South Africa. I think she will love the iPad and the teaching possibilities are endless...

Bella is really loving her horse riding and has settled in beautifully at Moms and Tots. I started taking Bella to Moms and Tots in February so she could start interacting with other children. We started in the baby class 12 - 18 months and she seemed to struggle with all the noise and sensory stimulations. I was about to stop going because I was worried about stressing her out but then something changed and she really loves it now and is really blossoming in teh class. She will be starting at the Moms and Tots school Plumtree next year in the 2 - 3 yr class for a few mornings a week. I think she is really going shine there with Haloise.

I went on an introductory HANDLE course for 2 days which is in my mind somewhat of a amix of brain gym and sensory intergration therapy. I think it is very powerful and would recommend any mom with a child with delays to look into it. I have been doing a lot of work on Bella's vestibular system via the HANDLE method and can see that she is more focussed and is 'stimming' less.

I took Max and Bella for their first photo shoot together and here are some of the pictures.

They were just so special and its great to have some pictures of the two of them together.

As you can see Max is very protective of his little sister and Bella adores her brother

We have also been a bit worried about Bella's eyes because she seems to have an intermittent squint and the Opthalmologist suggested that she may need surgery. Her vision is fine but every now and then she squints her right eye a bit. I am not sure I want to do something as invasive as eye surgery at this stage so am waiting to see what happens. I have noticed that since I have increased the dose of her Omega 3 oils her eye squints less and her eye contact has improved.

I really feel that her progress has been helped a huge amount by the DAN diet and biomedical interventions.

Max's news

Max has grown so much in the last few months and some of the things he says and does astonish me.. He is just so clever and insightful. He is doing well at school and is a natural sportsman. From rugby, soccer, golf, tennis, swimming, fishing and bicycle riding he just gets it so easily and quickly.

For his birthday he got a fly flishing rod my dad and he learnt how to cast the rod so quickly. We went away to Doornkop and had a great time with my Dad and Louise

Max has been so excited for the World Cup soccer being held in South Africa. On the 9th of June Bafana Bafana paraded through the streets of Sandton and thousands of people came out to support them. The atmosphere was electric with thousands of Vuvuzela's making a huge noise.

Max turned 5 on the 4th of June...I can hardly believe how quickly the time has flown. My baby boy is not such a baby anymore :( I have been a bit distracted with Bella over the last 2 years so sometimes I feel like I have missed out on things with Max but I have made a strong resolution that it stops now!!

There is so much other news but some of it deserves a post on its own like our dear Aunt Gigi......................

Hopefully I will be able to find the words to write about this.

Grandpa has improved and is stronger than he was when I last posted. He is now out of hospital in San Sereno frail care. Its been a long road so far and will continue to be. In the meantime we are lucky to have Granny (aka MaGogo) staying with us for a while. Bella adores her and her I am sure that the time they spend together in the evening has helped Bella become part of the "in crowd' (able to put objects INTO a container)... Thanks Gran

Untill later....

Cath

A yellow hula hoop

2010-03-12T12:57:00.000+02:00

On Monday at Bella's physio session my perspective on everything changed all because of my amazing little girl and a yellow hula hoop. Nicky (Bella's physio) held one side of a yellow hula hoop and Bella held the other side. Nicky started walking backwards to try get Bella to follow her. I expected Bella to sit down and refuse but instead she followed Nicky and walked holding onto the yellow hula hoop. She walked not just a few steps but big laps around the room.... I cant describe what I felt at that moment other than to say that my little girl is amazing and I love her and I love being her Mommy.

We have had quite a hectic and rough start to the year but life is good, Bella is great and Max is so precious. Here is a picture from christmas with Max and his amazing Dad in Simonstown.

We didn't know it at the time but our christmas holiday in Simonstown was the last one with everyone there as it has been for the last 15 years. My gran and grandpa will be in Johannesburg from now on and it will be fantastic to have them so close. Max has been an amzing little boy with MaGogo and his compassion for her and Grandpa is so heart warming. He has seen so much in terms of hospitals and illness in his life with Bella and now Grandpa. It makes me sad for such a little boy to have experienced it but it has helped him become the caring and compassionate little M.A.N that he is. I am so proud of him!

Our last visit to Bella's neurologist in February I have not had a chance to write about. We have finished weaning Bella off the Phenobarbitone and Dr T discussed starting to wean her off the Tegretol and Keppra. This was something I was not expecting at all. We will wait until our next visit in May and take it from there.

Bella is really blossoming at the moment, which is exactly what happened after our last Anat Baniel intensive therapy session in September last year. She is pulling herself up against the couches and tables so easily. She lowers herself very well when she wants to sit down and even cruises for a few steps along the couch.

Happy Birthday my little dove

2010-03-05T16:21:00.001+02:00

Dear Bella

Happy 2nd Birthday my little dove. I am sorry that this message is late but you know how busy we have been with Grandpa in the hospital.

You are an amazing little girl who has brought so much happiness to us all. I am so proud of you and how much you have achieved this last year and how you always have a smile no matter what. I love you more than words can say and look so forward to watching you blossom this next year. I promise to always love you, stand by you and encourage you to be you.

Love Mommy

Here are some photos of you at the beach at Chrismas time

Please Pray for Grandpa

2010-02-18T12:07:00.000+02:00

MaGogo and Grandpa came up from Cape Town last week for Bella's 2nd birthday. On the morning of Bella's birthday Grandpa accidentally fell down a step in our house and broke his neck. Luckily it did not severe his spinal column so he still has function in his arms and legs but he is still in ICU. The doctors tried to operate on Thursday last week but were unable to fuse the spine. He spent a few days in Halo Traction which seems to have stabilised his neck. He is still weak but seems to be improving. Please pray for Grandpa's speedy recovery.

I will write an update on Bella and my long awaited post on New York as soon as I can.

Another brief update and a guest appearance

2010-02-09T15:11:00.001+02:00

Since I have been back from New York I have been to the Pilanesberg and Cape Town. It is now 2 days from Bella's 2nd birthday and I am still battling to get back into my routine. I have not yet had a chance to write up a post on New York. GaLou has been far more diligent and given me her post which I have included below.

Briefly on the Bella front, Bella stood up all by herself last week without holding onto anything. I unfortunately did not see it and she has not done it since, but she can and she will when she decides to... She can also do all the actions to the song "Pat a Cake" which is amazing.

MaGoGo arrived today to be here fore her Great Grandaughters 2nd birthday. Its going to be a great week.

Without further adieu....

GaLou's New York post

It is now over a week since we returned from New York, and Cathy has asked me to write something for her blog. By way of introduction, I am one of Bella’s “extra” grannies, affectionately known as GaLou, so named when big brother Max was first learning to speak. I was lucky enough to spend some time with Cathy and Bella in New York last month, a city I had never visited. I guess January is not the ideal month to see New York for the first time – somewhat grey, and definitely chilly to very cold but none-the-less, it was a wonderful experience.

I went to most of Bella’s therapies with her, and it was really nice to see it first hand, but more so, to see the progress she made so quickly. Marcy worked a lot on trying to get her to stand and one evening, when Cathy and I were sitting on the hotel floor, Bella calmly put her hand on my knee and stood up! Not for long, but she definitely made a stand! She also worked on getting Bella to use her fingers to press buttons on her toys rather than giving them a heavy whack to get the music to play, and we also saw progress in this regard.

I managed to do a bit of sightseeing both with Cathy and on my own at times. I visited the Intrepid Museum, a retired World War II air-craft carrier which I thoroughly enjoyed, although I did not enjoy getting home afterwards. None of the taxies would stop for me and I ended up walking about thirty blocks back to the hotel, through some very dodgy areas, promising myself never to go anywhere without Cathy again. However, I did venture out alone again, went up Rockefeller Centre (in the mist), walked through Central Park and saw Grand Central Station. In between the three of us also managed some Harley Davidson shopping for Grandpa, had some wonderful meals, and cruised the shops in Columbus Circle, as well as Toys-R-Us in Times Square.

Most of all, I enjoyed spending so much time together with Cathy and Bella who, almost all of the time, was the most delightfully smiling little angel, as you can see in the pictures Cathy has already posted. Her smile slipped a bit on the flight home, when she decided it was definitely not sleep-time and I got to spend nearly two hours with her on the jumpseat in the galley playing “Pat a Cake” – but that’s just one of the many joys of being her granny!

New York photo reel

2010-02-05T15:05:00.000+02:00

I have been wanting to write up a long post on our time in New York but have just not had the time. GaLou sent me the pictures she took while we were there so have posted them here in the meantime. Enjoy....

Having fun in the bath!

Bear standing

Bear walking

Just being too cute

Kissing her new puppy toy

Patting her new puppy toy

Loving her duck in her new "beary" cute winter pyjamas

Just taking a break... note the crossed legs

Peeping out our hotel window at the last remaining christmas lights

Shopping

Enjoying a taxi ride

In Times Square

Enjoying her new electric toothbrush

First day with Anat Baniel therapy

2010-01-20T23:57:00.000+02:00

Today we had our first 2 sessions of therapy with Marcy Lindheimer. Marcy was very pleased with the progress Bella has made over the last 4 months since she saw her in September and commented on how much more aware and available she is. I think because I see Bella every day I don't notice the changes as much unless I stop to think about them. We are working on teaching Bella to stand up by herself. She has already been pulling herself to standing against people and couches but we will work on her implementation and confidence with this. It is really good to be back in New York and getting another perspective on Bella and how to enhance her development.

Another thing is that Bella is eating really well and is very willing to try new foods which is very 'unlike' her. I believe it is due to the biomedical approach we are taking and the GFCF diet. I think her gut is more 'comfortable' which leads her to be more willing with food.

Max stayed at home today because there was so much traffic after the storm last night that Grant went back home. The tree fellers arrived shortly after and there was no way Grant was going to get Max away from the tree felling action. Apparently by the end of the day he was good friends with all the guys. That is just so like Max!!

Max is going for his Grade 0 assessment at St David's next week Tuesday which I am really upset to missing. I can't believe he is going to big school next year. Here is a picture of Max the night before I came to New York.

Cockroaches and Poo

2010-01-20T04:05:00.002+02:00

Today started off rather early. Bella woke up at 3:30am so we had a very early morning before heading off to Toys R Us in Times Square. We then had a good nap at lunchtime before heading out this afternoon. As we were leaving a huge cockroach about the size of a R5 coin scurried across the floor in front of Bella. Initially I thought it was a peach pip rolling across the carpet. It seriously freaked me out so I asked the hotel to clean out my room on our way out. (I am sure the haven't so the king kong of cockroaches is still lurking in here somewhere).

Bella has not had a poo since we left Sout Africa other than a small one this morning. We went to a small diner called Josies for a early supper and just as my food arrived Bella had the most explosive poo. The people at the table next to us heard the noise and looked at us. I quickly picked her up to take her to the toilet only to find that the poo had gone all the way up her back and down her leg and was very visible on her white vest. I then saw that my cream top was also covered in the stinkiest poo I have ever smelt. It was so embarressing!! I have never seen a take away box packed and a bill paid so quickly.

After a big bath I decided I needed to take all the clothes and towels to the laundromat because I certainly did not want to attract any more cockroaches into our room. So we spent the rest of the evening at the laundromat.... Not what I had envisaged myself doing in New York :)

Tomorrow is our first session with Marcy. I look forward to seeing Marcy again and seeing how Bella responds to the ABM therapy.

Back in the Big Apple

2010-01-19T02:41:00.001+02:00

Bella and I are back in New York. It seems quite surreal and almost like I never left because everything is so familiar. Which is a good thing. The trip here was much harder than last time because Bella was not happy to sit in one place for so long. She really wanted to crawl all over the plane which is fantatstic that she is getting so adventurous. Here she is with one of the few times (for safety and security reasons) that she was allowed on the floor.

The weather is not as cold as I was expecting but still cold enough. Bella is not happy about being wrapped up with a beanie on her head. I managed to coax a smile out of her in the second photo.

Yesterday Bella and I met up with Lori, an old friend of mine and had some lunch. I had to keep Bella awake to try get her onto New York time but she was sobbing with exhaustion by the time she went to bed last night. 'Poor wee lamb' as Magogo would say......
Today I did some shopping and and have already broken my rules but all the winter sales are on!!!!!!!!!!!

We start therapy with Marcy on Wednesday and I am very interested to see what she says about Bella's progress in the last 4 months. She is doing so nicely and is now bear walking all around our hotel room including up a stair into the bathroom so I better go rescue her. Bye..

Can't believe I didn't tell you...

2010-01-12T16:16:00.001+02:00

how Max superglued his eye shut in December. He was trying to build a chicken house and rubbed superglue in his eye. Here he is in the emergency room after having his eyelashes cut open and his eye cleaned.

January 2010 - Full steam ahead

2010-01-12T16:04:00.002+02:00

Its only the 12 January and it has been a hectic month already...

We went to see the DAN practioner on Wednesday last week and she has put Bella on GFCF diet and a whole range of supplements. We are sending some tests off overseas to confirm what she saw in Bella's live blood analysis. One of the tests required her hair to be sent to the lab so I had to cut off a huge patch of hair at the back of her head which looked so silly with the long curls on top of Bella's head. In the end we had to cut most of her much shorter which is quite upsetting because I was enjoying 'styling' her curls with pretty clips etc. Anyway, small things..... We started Bella on the new diet regime and she is definitely sleeping better and seems a lot brighter and doing a lot more exploring around the house. Its hard to pinpoint it to the diet because she has also finished the Phenobarb completely. I would love to chat to some Moms who have done the whole GFCF thing.

We went back to the Opthalamologist for a check up because I had noticed Bella seems to have a squint developing. The eye doc was very happy with improvement in her vision since October 2008 (when she now tells me Bella couldn't see anything). She said that her vision is perfect and that the squint is quite common and she thinks unrelated to Bella's other problems. It will either go away or she will need glasses or eye surgery. We have to go back in April to see what has happened. I discussed this with Bella's OT and she has recommended some eye exercises to strengthen her eye muslces if it is just due to eye muscle weakness. It is quite possible so because it is an intermittent squint which happend randomly in both eyes.

Bella had her check-up EEG yesterday which was supposed to be a 2 hour sleeping EEG. I didn't sedate because she normally doesnt react well but instead decided to time it over a sleep time. Needless to say Bella thought it would be way more fun to pull the cords of her head and try to climb out of her pram.

After her EEG cut off the offending glue with the extra long curls to try and turn her bad hair day into a good hair day..

We should get the results of the now 20 minute EEG this week before we leave for New York this Saturday. I can't believe how quickly time has passed and we are off for our second Anat Baniel Method session. I am not sure what I want to come out of this session. Last time I wanted Bella to crawl but I do not want to push the walking yet because she needs to spend a fait bit of time crawling. So I think I am just going to go with the flow...

I am so stressed out about leaving Max. I have had the feeling that he is more prepared for it than last time but as the time draws nearer I can see that he is starting to get stressed :(

The next time I write I will probably be in New York.

Christmas, New Year and a look back at 2009

2010-01-05T13:59:00.002+02:00

I have not written anything for quite a while so sit back and enjoy...

Christmas and New Year

We have a had a wonderful December holiday. We all went to stay with my Gran in Simonstown in Cape Town for Christmas which qualifies as our second beach family holiday. My sister Helen came out from London, my uncle and cousins from Canada and my Aunt and cousins from Minnesota. It was wonderful to see everyone and for everyone to meet Bella. The last time my Uncle Al saw Bella was when she was in a serious way in hospital with her seizures. We have come so far since then.

Max and Bella both loved the beach! Max had so much fun spotting penguins, collecting shells, throwing see weed on everyone, building sandcastles and having brief swims in the cold water. Bella just loved digging in the sand and sitting at the edge of the water. It was lovely for Grant and I to visit the beaches we went to as students with our 2 beautiful children! I just love this picture of Max walking into the sea early in the morning at Fish Hoek beach.

On New Years Eve, Mom and Lexi looked after our kids so we all went to a party at Gordie and V's. Mom drove us there in Sheens car with us all sitting in the boot. We all had a good laugh because we felt like teenagers again being dropped off at a party by our parents :-) Oh what a night is all I can say... If you want more details you should speak to Helen. And Helen if you are reading this, please hurry up and send me some of the holiday photos you took so I can post them on this blog... Mwah!

I am now back at work getting everything organised for out trip to New York next week for some more Anat Baniel Method therpay. Bella's eyes have started to squint a bit so I have managed to get us an appointment with the opthalmologist this Friday after a lot of begging and pleading with the receptionist. I did not want to wait until February. Bella is now off the Phenobarbitone YAY!!! But she put on a fair bit of weight over Christmas (didn't we all) and so we may have to increase her Tegretol levels. I am desperate to keep her stable as any hiccups and I will have to cancel her trip to New York.

I have also decided to move forward with the biomedical / DAN Defeat Autism Now / Nutrition interventions. I am seeing Carin Smit tomorrow who is one of the only DAN practitioners I can find in Johannesburg South Africa. I am quite excited about this intervention and after a fair bit of research this holiday I think it will benefit Bella. On of the Mom's blogs I read did a great post on alternative therapies which you can access by clicking on this link Alternative Therapies The very last therapy she covers is the Biomedical interventions.

Max is growing up so fast but still is my little boy. He is so sensitive and caring and I am so proud of him. Some of the things he says are too cute for words and I am planning to do a blog of all of his expressions.

He is staying in play school this year and will only start big school next year. I know he will miss me when I go to New York but I think he will manage better this time..

Oh and by the way, I haved stopped smoking as of yesterday using Allen Carr's Easyway!

Looking back at 2009

The best way to review this year is to start at the beginning, 1 January 2009 12:01am :

On New Years Eve 2008 Bella had just been released from hospital after having another series of breakthrough seizures. We stayed at home with Helen and Rico and had a quiet night. As the clocked ticked over to 2009 we were listening to the song The Rose by Bette Midler and very worried about what lay ahead for us. At this stage Bella could roll from back to front and vice versa, she could sit with a lot of support and was a very smily girl.

In January and February we had two more incidents of breakthrough seizures and Bella was diagnosed with Cortical Dysplasia on the righ parietal lobe just before her 1st birthday. We were very happy to find that she had a non progressive static condition but this condition or 'label' brings its own expectations.

After February 2009 things settled down for us. Bella did not have any further breakthroughs, she stopped the ACTH steroids and started to progress. We added Tegretol and started the Phenobarbitone weaning process. After the many ups and downs of the year I can list Bella's majpor milestones as:

Can sit up independently

Can crawl on hands and knees

Can pull herself up to standing

Can feed herself with a bottle

Can feed herself with some assistance with a spoon

Anticipates events and sequences

Understands object permanence

Understands cause and effect

Starting to vocalise Ma ma ma

Has seperation anxiety

Can pick up her bottle with one hand

Can do very basic multi-tasks

I am sure there is more but I just can't think of them right now. But most importantly she is a happy, affectionate and playful little girl. I doubt I would have believed it if I had been told where we would be at the end of 2009..

And of course Max's achievments are endless but I will list the ones that I am particularly proud of:

Max knows all of herbs and has planted a beautiful herb and veggie garden with Grant

Max's body image pictures at school progressed from a primitive circle and lines to a body with clothes on and a background of grass, sky, sun and trees

Max has learnt to hit a tennis ball, kick a soccer ball, hit a cricket ball, bang a volley ball with huge accuracy and determination

Max has learnt to swim unaided and is completely fearless about jumping into the pool off a high ledge

Max learnt to ride a pedal bicycle in record time (about 10 minutes)... super balance

Max has grown up into a very empathetic and protective brother. He always considers Bella in anything he wants to do and is respectful and understanding of her current limitations...

Max my boy, I am super proud of you!!! Grant, let me know if you want to add anything

What a crazy and unexpected year it has been. I hope that 2010 brings similar blessings as 2009 did.

Back to Normal

2009-12-09T11:11:00.000+02:00

I have not written anything for quite a while because I have just been busy enjoying being back to normal. For a long time everything has felt like a long hard battle. Recently things have been going smoothly and we have been doing lots of 'normal' things. Grant and I have been to quite a few christmas functions including The Killers concert which was awesome. Bella has been progressing nicely and is very happy. She is improving almost daily now that we are nearly off the Phenobarb (last day will be 28 Dec)..All of her therapists have noticed the change in her. She is far more explorative, focused and interactive. The other day she crawled from the dining room into the kitchen and started pulling the cereal boxes out of the cupboard.

This last weekend we went to our annual kids christmas party with friends and I refelcted on how far we have come in the last year. Its really quite amazing!! Last year Sheens took the kids to feed the bunny rabbits next door and they saw an owl. This year, on Sunday, we saw an owl swoop down onto the tree in Sheen's garden, followed shortly by another owl and then another owl. Three owls in total.....

Max has been such a super star this last year and has really been through a hard time as well. Bella is now at a stage where she can play a bit with Max and he is such a gentle protective brother.

Everything is as it should be and we are back to normal (albeit our new normal)

Phenobarbital Question

2009-11-27T14:08:00.000+02:00

Bella had her appointment with Dr T today. Her phenobarb level is 27 umol/L which is well below the therapeutic range which starts at 41 umol/L. Her dose is now 1.8 mg/kg which is also below the normal dose. We are going to speed up the weaning process slightly and she will be off the Phenobarb by the end of December. Even though the level is so low I still worry that it may be having some therapeutic effect at these levels. When Bella was on Phenobarb monotherapy she needed a level over 100 umol/L and a dose of 10 mg/kg for seizure control so I am hoping that it is not still contributing to seizure control at these levels. Does anyone know if there could still be a therapeutic benefit at these low levels?

On a lighter note Bella is pulling herself up into standing which is a great new achievement.....

Tuesday update

2009-11-24T16:14:00.001+02:00

I have been very busy lately and so has Bella.. Bella is now holding her bottle and feeding herself, she can crawl up a stair and is exploring a lot more around the house. The work we have been doing to de-sensitise her mouth seems to be working because she is putting a lot more into her mouth other than just her fingers...

Max had his school concert last week and was a fantastic lion. I cant believe this is his 3rd year at nursery school!! It amazes me how he manages to remember the words and actions to so many songs. Here is a picture of Max just after the concert eating some well deserved cake.

We are seeing Dr T on Friday and will be doing Bella's Phenobarbitone and Tegretol blood levels. Her Phenobarb level should be really low by now and hopefully we can finish the whole weaning process as soon as possible. I am very anxious for her to be off it and to see that she can cope without it.

This week is also special because it is 14 years ago today that I met Grant and it is also Grants birthday on the 1st of December...... Our festive season has officially started!

Sad, grateful and tired

2009-11-10T15:49:00.000+02:00

I have had quite a strange week. I have been following little Gavin Owens website over the last week and felt very sad as he earned his angel wings. At the same time am I so grateful that Bella did not have a metabolic or mitochondrial disease as it was initially thought. I am also tired, very tired of not knowing what the future holds. But at least Bella is with me, is moving forward, is wanting me, is happy and is alive!

Holiday photos

2009-11-02T16:28:00.000+02:00

Bella loving being outside in the sun

Still teething

Max enjoying breakfast at The Lighthouse Cafe

On the beach and loving the sand. Look at the little hippy ankle bracelet

Brother and sister, like two peas in a pod

Happy and clean after a long day in the sun

My song for Bella

2009-11-02T16:20:00.001+02:00

Whenever I hear the song The Climb by Miley Cyrus I think of Bella....
Here are the lyrics. I don't think I need to say more...

I can almost see it
That dream I'm dreaming but
There's a voice inside my head sayin,
You'll never reach it,
Every step I'm taking,
Every move I make feels
Lost with no direction
My faith is shaking but I
Got to keep trying
Got to keep my head held high

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna to have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing,
The chances I'm taking
Sometimes might knock me down but
No I'm not breaking
I may not know it
But these are the moments that
I'm going to remember most
Just got to keep going
And I,
I got to be strong
Just keep pushing on, cause

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes I'm gonna to have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

There's always going to be another mountain
I'm always going to want to make it move
Always going to be an uphill battle,
Sometimes you going to have to lose,
Ain't about how fast I get there,
Ain't about what's waiting on the other side
It's the climb

Keep on moving
Keep climbing
Keep the faith baby
It's all about
It's all about
The climb

Fishing and drinking Vida coffee

2009-10-18T17:11:00.001+02:00

We arrived in Umhlanga yesterday after having a 2 hour delay on the runway. The airplane was delayed due to bad weather. When we arrived Max spotted a fishing net in the hotel shop which we bought. Max then gave Grant and I a lecture on proper fishing protocol. You only ever eat the first fish and the rest you put back. Very importantly you must give the fish you caught a big 'love' before you eat it! This morning he spent a long time in the tidal pools but did not catch anythig. Then.... on our way out he made a beeline for the Koi pond at the hotel entrance and tried to catch a Koi fish!

In New York we worked on Bella's intentions with her hands and tried to get her to take her bottle. This skill has come a long way and she is now reaching for her bottle and bringing it to her mouth. She will even choose which bottle she wants if I put a milk and juice bottle next to each other. This morning we got a Vida E Cafe coffee in Umhlanga and Bella tried to take my coffee cup and drink it. Associating my coffee with something to drink is a big step forward!

Bella loved exploring on the beach and was covered in beach sand from head to toe in no time!

We are going on a summer holiday....

2009-10-16T12:19:00.000+02:00

We are going on holiday tomorrow!!! This is a major event since we have not been on holiday since May 2007. We are going to Umhlanga Sands which is right on the beach. Max is super excited and keeps talking about taking swimming slippers (which are in fact flippers). I am also really excited to see how Bella reacts to the beach sand and waves.

Bella is so cute at the moment and has suddenly become very interested in our dogs. She loves to watch them play and squeals with delight! She had a great morning at riding therapy and seemed to really be taking the whole experience in. Too cute for words.

Bella is back

2009-10-06T11:49:00.000+02:00

Since we got back from New York Bella has been teething and never quite did what she was doing in New York. I was starting to get a bit worried and was wondering if I had imagined it but Bella is Bella is Bella... She does what she wants when she wants to and last night she was back to her New York self. Lots of babbling saying mamamama, wawawawa and babababa... She also crawled out of Max's room to look for me and then back into Max's room when she heard Grant talking! Yesterday she also had a really good day at Physio and crawled through a long tunnel a few times and she also crawled over a block obstacle course to reach her favourite toy. Bella is back!

For anyone who wants to know more about the Anat Baniel Method here is a link to the website:

Anat Baniel Method for Children

I haved booked to go back to Marcy in January. Marcy's full details are as follows:

Name: Marcy Lindheimer
The Children's Practice: ABM Center NYC
2109 Broadway #9-93,
New York, NY - 10023

"Specializing in ABM for children of all ages in NYC, Chicago and the ABM Center in San Rafael."

Phone: 212-362-8597
Fax: 212-580-8809
E-mail: mlindheimr@aol.com

Home sweet home

2009-09-22T15:41:00.001+02:00

We arrived back on Friday after an uneventful flight. Bella has managed this whole trip extremely well!
It was so nice to everyone at home especially Max. He has been so sweet and loving to me but I can see that he has struggled and is a bit insecure. Our garden has just blossomed while I have been away and is looking lovely. It was my Dad's birthday on the 17th so we had a good South African braai on Saturday night. What bliss to eat home style food. Here is a picture of my Dad on hiw new Harley Davidson.

Bella went to see her Neurologist yesterday and Dr T is very pleased with her progress, We are now going to continue with her Phenobarbitone weaning schedule. I am a bit ner vous about it but it will be so good for Bella's development if we can get her off this medicine.

Bella has continued with her crawling though it did slow down a bit for the first few days we were back but she seems to be back on track now. I am busy setting up speech therapy for her now as she is now ready for it. That brings our list of therapies to 9 per week excluding everything we do at home. I am back to my hectic life already. New York seems like a breeze!

Last few days in New York

2009-09-16T19:40:00.000+02:00

Bella has been doing beautifully. She is moving with far more purpose and I am really happy with the therapy. I intend on writing a blog which details my understanding about some the principles of the Anat Baniel Method (ABM). We will definitely be coming back again!!!

I have downloaded my pictures and have inserted them in some of my older posts...

We have had a very busy few days. Yesterday we went up to the top of the Rockerfeller centre, this is not for someone who is scared of heights. When you get in the lift they switch the lights off and the ceiling is made of glass. There are lights which light up the elevator shaft so you can see how far and fast you are going up as the lift races (and I mean races) to the top floor. Quite scary. Here is a picture of central park from the roof of the Rockerfeller centre.

Last night we went for a picnic in Central Park in the Strawberry fields just outside John Lennon's apartment building where he was murdered. (V had to educate me on the fact that John Lennon had a song about Strawberry fields). As we were leaving there were people singing and putting flowers down on the IMAGINE memorial mosaic.

It has been so great having V here with me. We have had a great time and I so appreciate her having joined me. Thank you V if you are reading this... One thing I can say is Oh Boy V can shop. Here is her 'Shopping Shelf' after just 4 days...

We are coming home tomorrow and I just can't wait!!

The weekend in New York

2009-09-14T04:08:00.007+02:00

We had a wonderful weekend in NY with V. The weather was beautiful and we did some serious shopping! Bella only had one session this weekend just to give her a little break. This evening she crawled about 1 meter without a toy to entice her. I was standing in the kitchen and she just crawled to me!!

Yesterday we went to back to Times Square for some more toy shopping and had a lovely dinner at Isabella's.Today we went on a tour and saw Madison Gardens, Ground Zero and the Statue of Liberty to name a few. In between all of this V and I walked about 50 blocks so we are both completely exhausted tonight. We also went to central park and had a horse drawn carriage ride. Tomorrow we plan on going to Harlem and on a harbour cruise.

To end off, I saw another NY character today, a Rastafarian Chinese man doing Yoga on the pavement outside our hotel....

Singing in the rain

2009-09-11T23:47:00.002+02:00

It has been pouring with rain in New York today. Bella and I had a duvet day and just relaxed. Luckily there is a laundromat in the hotel so I did some washing. It was quite drama going to Marcy in the rain. There I was holding two umbrellas, pushing Bella's pram and trying to dodge the traffic and the puddles. While I was doing this Bella was squeeling with delight at the wind and rain. Her noises were so cute it sounded just like she was singing in the rain...

Here is a picture of Bella, its not a great one but I really struggled to take a photo in the rain.

My Dancing Girl

2009-09-10T22:44:00.000+02:00

We had a good session with Marcy this morning. Again Marcy commented on how well Bella transitions. In fact her exact words were "Bella's transitions are exquisite" and that I must definitely take her for dancing lesssons when she is older because her transitions are so smooth and beautiful. Bella going for dancing lessons is not something I have thought of since she was born. Wow, what a mind shift!!

A lot of the work we have been doing here is trying to develop Bella's intentions. Marcy feels that she has all the capability to move but needs to learn motivation and intention with her movements. She is already more motivated in reaching her toys and intentionally crawling a few steps towards them. Once Bella is completely off the Phenobarb it will also help a lot with her motivation. A lot of Bella's toys are more 'amusement' toys and I need to look for more toys which will require her to do something to get an outcome. I certainly dont need any excuses to shop....

Tomorrow is September 11th and there is a lot of preparation going on here for the ceremonies. The whole block around our hotel has been barricaded so I am sure something is going to be happening in our block tomorrow.

V arrives on Saturday which I am really excited about. It will be really nice to see some of New York with her. I am looking forward to coming home and to giving Max his bag of toys and treats. The little M.A.N has been super brave.

Teething and Rollerblades

2009-09-10T02:30:00.000+02:00

Bella has been super grumpy today. Shouting a lot and generally being otherwise. I noticed that she keeps putting her finger at the back of her mouth and when I managed to get a look in her mouth I can see that one of her back teeth is coming through. The inside of her cheek is bleeding and it looks like she has bitten the inside of her cheek. No wonder she has been so grumpy but its really bad timing. She also hasnt done much of her new crawling the last 2 days. But thats how she has always been. I will go and look for some teething gel tomorrow and hopefully it will be better than the South African ones because those dont help her at all. When I went to chemist to see if I could get some Panado or similar, they seemed horrified that I wanted it without a prescription from a Paediatrician. Luckily I seem to have enough with me anyway.

Marcy has also been talking a lot about sensory issues which ties in with what Kate (Bella's OT) says. I also noticed that a fair bit of the work Marcy does is similar to what Nicki does (Bella's Physio). From what it sounds like the Physio's in America do things quite differently to those in South Africa. I just keep realising what excellent Doctors etc we have in South Africa.

The kitchenette in our hotel room does not have an electric kettle. It has a 'pot' kettle which you use on the gas stove to boil water. This was quite a challenge in the beginning but now I am used to it. But, I am really missing Grant's cooking. The food here is so oily and I really dont know what to eat. I can't wait to come home and have some nice clean healthy food. Luckily I brought some Woolies Honeybush Rooibos tea with me.. Interestingly enough Starbucks coffee shop has Vanilla Rooibos on their menu. I must try it out...

I have done a lot of strolling on the streets with Bella. Now I know why Americans call Prams 'Strollers'. Today I saw a very funny sight. I was standing at a major intersection waiting to cross the road when a very old chinese lady flew across the road on a pair of rollerblades. The NY taxi's nearly crashed into her but she just carried on completely oblivious to the chaos she had caused.

More tomorrow..........

Day 4 for the Transition Queen

2009-09-07T22:53:00.001+02:00

Today was our first day of double therapy and I was a bit worried about it because Bella seemed very sick
this morning. She did really nicely though and I think the antibiotic is starting to work. I was amazed at
all the different people who have come from all over America to bring their children here for ABM therapy
with Marcy. There are even people who have moved to New York so that their kids can have regular therapy. I
met a little girl who had a stroke at birth and is now learning ballet and to play the piano. Wow!!!

Bella had 2 good sessions and I am starting to understand the therapy more, the key elements being information
and differentiation. I am starting to see some progress with Bella and again Marcy commented on how well she
transitions between positions. She even said she is her Transition Queen. Now I am starting to worry about
how I can come back again in terms of money, time, leaving Max etc etc.... One step at a tim for both myself and
Bella.

Session 3

2009-09-06T19:24:00.000+02:00

Bella had her third session with Marcy which went much better now that she has finally had some sleep. Marcy is impressed with Bella's movements and ability to transition between positions. She does not think her ability to move is a problem at all and wants to rather focus on working on her 'intent' / 'purpose' when she moves so that Bella can really understand what she is doing.

I have had so many comments on how beautiful Bella is, which is why her name Isabella which means beautiful is so appropriate....

Tomorrow we will have 2 sessions so I am off to enjoy some retail therapy now.

Some sleep at last

2009-09-06T14:42:00.001+02:00

At last we had a decent nights sleep. Bella slept from 8:30pm to 5:30am. Yay!!! She has had quite a bad runny nose and a cough and seems quite miserable today so I phoned Dr K and we have decided to put her on Antibiotics just in case. Luckily I brought some Augmentin with me so hopefully this will help.

At last I am managing to get her to eat even though its quite a drama. She is insisting on being on the floor and crawls around to play with her toys. So in order to feed her I have to crawl around on my hands and knees and feed her while she is moving. It is a problem I am ecstatic to have!!!

We have her therapy session this morning so I am planning on taking a walk to Hudson river before her session and on doing some shopping later this afternoon. From tomorrow onwards we will be having 2 sessions a day.

Here is a picture of Hudson river from our walk this morning.

In New York and Bella is crawling

2009-09-06T02:44:00.005+02:00

We are here! Bella and I had a long but comfortable flight to New York. Luckily we managed to upgrade our tickets to business class and the seat next to us was empty so Bella had her own flat bed on the flight. Here are two pictures of the little madam on the plane.. I particularly love the first one.

Since we arrived on Thursday Bella has not slept for more than 5 hours at a stretch so we have both been exhausted. She has finally gone to sleep now as I am writing this and I really hope she gets a decent nights sleep. We have had 2 ABM therapy sessions already but Bella was so grumpy that it was quite difficult to do anything. Be that as it may BELLA STARTED CRAWLING the night we arrived. It is too special for words. She is doing her new crawl / hop across our hotel rooms floor chasing her balls. She is clearly very pleased with herself and I am super proud. The one objective I had from this NY trip was to get her crawling and she has done that before we have even started. I think the ABM therapy looks very promising and I hope she is better rested tomorrow so she can get the most out of it.

Since we arrived on Thursday we haven't done too much. We have been to Central Park, Times Square and done a fair bit of shopping. I plan to go on a horse drawn carriage drive around Central Park in the next few days. Very touristy I know but Bella and I will both enjoy it. This is a picture of Bella in Central Park playing with her piano.

Here is a photo of where we are staying in NY. On the left hand side you can see the blue Hotel Beacon awning which is where we are staying. The large building on the right hand side is the Ansonia which is where the childrens therapy centre is. You will notice the wide clean pavements and trees. I really noticed the difference in the Upper West Side to Midtown NY today when I went to Times Square. The buildings in Midtown are very tall so there is not much sun, there are no trees and there are lots of people and litter. In the Upper West Side where we are staying it is quieter (by NY standards), sunnier, cleaner, the people dress better and there are trees along the streets. A very different vibe.

I dont know what has happened to the formatting of my blog, still trying to figure it out....

Sleep tight

13 Days to go

2009-08-21T13:19:00.003+02:00

It is now only 13 more days until Bella and I go to New York... I can't believe it is time already. I am so busy trying to organise everything before I go away. I have a very long to do list and items to take with list but I am sure I will forget something....

Max and Bella are interacting so well now. Max adores his little sister and is very protective of her. Here is a really cute picture I took of the two of them in the garden. Bella just lights up when she hears Max..

Bella had a temperature of 40.5 C yesterday and Dr R tested for Swine Flu. I dont think she has it but given her medical history he thought it was wise and justified to test for it..... She seems a lot better today though.

Our weekend away was great fun. Max had a complete blast fishing, riding and building fires. I even went for a ride with Lexi and we had a great gallop / canter up the hill next to the buck. Here is my little man on his big horse.

Have a great weekend

Some interesting research

2009-08-14T10:16:00.004+02:00

I got sent some new research from Neurology newswire from the latest Epilepsia journal which I thought was very interesting. The name of the article is "Benefit of combination therapy in epilepsy: A review of the preclinical evidence with levetiracetam" by Rafal M Kaminski, Alain Matagne, Philip N. Patsalos and Henrik Klitgaard.

Basically my understanding of the article (which is really only my understanding) is that from preclinical tests they have found that when Keppra is taken with other anti-epileptic drugs it improves the effectiveness of the other drugs without increasing the other drugs blood levels and side effects.

For example the effectiveness / potency of Valproate is increased by 28 times and Phenobarbital by 16 times. There is a whole list of drugs included and it shows by how much the effectiveness is improved. If you want a copy of the article let me know.

P.S. Bella is doing great. Starting to play with toys.. Yay

A good week

2009-08-12T13:08:00.004+02:00

This last week has been quite quiet. We all enjoyed the long weekend and Grant and I managed to spend some quality time together. Max spent a lot of time building fires in his braai.. a pyromaniac just like his Dad.

Bella had a really great weekend. She is getting into her early bedtime routine nicely. She also grabbed her bottle and pulled it to her mouth which is a big first for her... She is constantly getting into the crawling position and rocking on her arms. Hopefully this means she will be ready to crawl soon which will be a huge celebration.

We have decided not to drop her Phenobarbitone anymore until we get back from New York which is now only 3 weeks away. I cant believe how quickly time is marching on. I am a bit in two minds about the Phenobarbitone. On the one hand I dont want any problems when we are away but on the other hand we have seen big improvments as her dose has come down and am very eager to get her off it completely. Based on the current schedule she will only be off it in December..

We are going away for the weekend to Dullstroom with my Dad which will be the first time we have been away together for 2 years!! So here's to a good week and weekend ahead!

A quick note

2009-08-05T09:10:00.002+02:00

Last night when we put Bella to sleep in her cot she was quite active and then eventually went quiet and went to sleep. When we went to check on her we found her lying sideways on her stomach with both legs hanging through the bars and touching the floor outside the cot. I wish I has taken a picture it was too cute for words. Needless to say I think its time to move her into a bed.

Max told me this morning that when he grows up and is 6 years old he wants to be a daddy lion....

All my girls

2009-07-28T13:02:00.007+02:00

This is a picture of all my girls.. In the front is Bella who was really interested in watching Max build a fire in his braai. Behind Bella is Nikita the brown and black Beagle who is the cheekiest dog I have ever had. She has so much attitude. Next to her is my Labrador, Nutella who is a puppy at heart and at the very back is our latest addition Tinkerbell who is a rescue dog. We thought she would be a very large Bull Mastiff so called her Tinkerbell as a joke, but it seems the joke is on us as the vet said she is not going to get any bigger than what she is now..

We have quite a cold winter so this was one of warmer days and Bella really enjoyed being outside on the grass in the sun. She loves her swing and trampoline outside and this really helps with her vestibular and proprioception development.

We are still busy weaning Bella off her Phenobarbitone and will only be finished by the end of the year. She is currently on 45mg and was on 105mg which is a really large dose. She needed this large a dose due to the Pyridoxine she was which reduced her Phenobarb level. We have seen huge progress since we have dropped the Phenobarb. In fact in the last few days she has discovered how to get into the crawling position from sitting which is great news and is the first step to actually crawling forward. She just loves doing it and even does it in bed when Grant and I are trying to sleep. Its really cute to see her little head bobbing up and down between us in the dark when we are trying to sleep.

Bella is also on Keppra and Tegretol which will hopefully be her only drugs once she is off the Phenobarbitone.

Under the African Sky

2009-07-28T12:44:00.009+02:00

Max went camping this weekend with his Dad and both Grandpa's at the Pilanesberg game reserve. The temperature on Saturday was -3C so it was definitely a trip for boys only. Bella and I stayed at home and had a girlie weekend with lots of retail therapy :)

This was the first time Max has been to a game reserve (other than when he was really young) and from what I heard he was super excited about seeing animals in 'the wild'. Since I wasnt there I have asked Grant to write about their weekend away..

We headed off in a puff of excitement but it wasnt long before Max was telling us "its taking too long Dad". This lasted for about 1.5hrs of the 2 hour trip! Luckily we went through a tunnel on the way which added some much needed entertainment! Once we got there he was immediately off climbing trees and chasing birds and monkeys while we were pitching camp. Not long after, I went for a walk with Max along the camp perimeter fence where we saw 2 elephants (on the other side) in the bushes about 40 metres away! It was a huge thrill and Max was so chuffed. We then went for a game drive and saw loads of animals. One of the highlights was seeing a mother rhino and her calf walking 10 metres away from us for about 5 minutes. Max's favourites were the Pumbas (wharthogs) though! Luckily they were close because I could not get the binoculars away from Max for love or money:)

Once back at camp, the sun began to set and the temperature started dropping faster than you can imagine so we immediately got a huge fire going. We actually had 2 fires because Max brought his own braai along. He had a ball running around and collecting wood and throwing it onto his fire. Anyway, after a few glasses of red wine and OBs (cheap sherry) we managed to get through an absolutley freezing night! The juice and water bottles we had were frozen solid the next morning. Needless to say I think the grandads won't be in a hurry to go camping in the middle of winter again!!

Anyway once we got back from the morning game drive there were monkeys all over the place - drinking our juice, opening tupperwares of coffee and sugar etc. Max had a great time chasing them off with me. We had a quick breakfast and headed home....Max couldnt wait to see Mommy again!

All in all a great time was had by all...

What people say and dont say

2009-07-23T10:10:00.007+02:00

Since Bella first started having seizures and we were facing many horrific diagnoses we have been surrounded by many caring and supportive people. Bella has seen many doctors and medical professionals and everytime when we have asked about her prognosis it has always been that she will have challenges but we dont know her final outcome. The doctors views have changed over and over again and right now everyone is very happy with her progress!

There have been a few people who have seen her glass as being half empty rather than half full. I have had people with no knowledge of her condition telling me what and who she will become. I have also known some people who sadly never comment on her wonderful progress but rather say nothing or only focus on the negatives.

Bella has been going for occupational therapy for only 2 weeks and Kate said to me that she is amazed at the changes she has seen and she has had to rethink her initial views. She also said that she sees many children with challenges and she can see that Bella is 100% aware of whats going on around her and is taking everything in. It is wonderful to have such a positive and insightful person in Bella's life and this is the kind of person Bella needs in her life.

From now on I am only going to listen to people who see Bella's glass as half full and those who appreciate Bella for who she is... A beautiful, clever, brave and stubborn little girl! I would not want her any other way.

Max hard at work

2009-07-21T11:25:00.008+02:00

Max who is more a boy than any boy I know as a huge liking for trucks, cranes, bulldozers and cement mixers. About 6 weeks ago he saw a cement mixer at Toy Zone that he fell completely in love with. Grant and I decided to teach him one of lifes lessons and got a star chart for him so he could earn the cement mixer. Initially Max liked the idea but after a while he decided in his words "I dont like earning its too hard". To keep the motivation up we bought the cement mixer and put it in the storeroom so that he could earn it out of the storeroom. He tried on numerous occasions to make a 'deal' with us to get the cement mixer and even took to just touching the box in the storeroom.

Yesterday his star chart was almost full and I didnt have the heart to torment the little man anymore so he finally 'earned' his cement mixer! The delight on his face when he realised that the cement mixer was now his was just too cute!

Here he is sleeping peacefully after a hard 6 weeks work with his beloved cement mixer...

Dancing and Gambling

2009-07-15T08:52:00.003+02:00

About 2 weeks ago Grant and I were getting ready to go out on our usual Friday night date night. We were in the lounge playing music and dancing like we used to... Max was also having a onderful time dancing like an African Impi with the dogs basket on his head. Quite a special sight. We then played the song The Gambler by Kenny Rodgers which is a song Grant and I have always enjoyed. It was playing very loudly and we were loving singing along together. Bella was sitting on the floor and I picked her up to dance with us. The transformation was amazing. She was absoloutly beaming and jumping around in my arms just loving it!!

The chorus of The Gambler goes something like this.." You have to know when to hold em, know when to fold em, know when to walk away and know when to run....
You never count your money when you're sitting at the table, there will be time enough for counting when the dealing's done". At the time I thought to myself that no matter what anyone says to me I am going to hold on to my belief in Bella and her future because her I know that her full hand of cards has not yet been dealt...

Playful and broken hands

2009-07-10T11:22:00.004+02:00

This week has been quite a week other than the great achievments on the 8th of July.

On Tuesday I took Bella for her first appointment with an Occupational Therapist, Kate. Kate is amazing and a very positive woman. Bella connected with her immediatly and had such an amazing session with her. She was positively glowing afterwards. Kate thinks that one of the reasons Bella is not using her hands so well is because she has been so traumatised by her experiences. Bella needs to build up trust in her environment through lots of play... In light of this I have also enrolled Bella for Hydrotherapy. She loves water and I think she will benefit a lot from 'playful fun' therapy. We will have our first session next week.

My monster Max had his cast taken off his arm on Wednesday only to find out that the fracture had collapsed. His wrist is skew and still sore. We are waiting to see if it will heal by itself otherwise he may have to have it rebroken and reset. My boy is just such a boy!!!

The 8th of July

2009-07-10T11:16:00.002+02:00

The 8th of July is quite an important day for Bella. In 2007 I had my very first scan while I was pregnant with her. In 2008 Bella was in hospital with her seizures and had been taking ACTH and her seizures stopped on the 8th of July... The 8th of July 2008 was also a very sad day. The little girl who was opposite Bella in hospital passed away. Her name was Ruve and I am sure I will think of her and her family every year on the 8th of July.

Then on 8th of July 2009 Bella sat up from lying down all by herself! I am so proud of her. She has been sitting unsupported for quite a while but could not get up by herself. On the 8th she discovered she could get up all by herself and the look of excitement on her face was just worth everthing. She kept on doing it over and over again and loving her independence.

We will have to see what the 8th of July 2010 holds for us.

Have a great weekend

My First Blog

2009-07-03T13:51:00.001+02:00

Well this is my first blog so is just a test run.

My daughter Isabella is 17 months old and started having seizures when she was 2 months old. We received a diagnosis of mild Cortical Dysplasia when she was 12 months. Her seizures are under control for now with Keppra, Tegretol and Phenobarbital which we are busy weaning her off...

She was on ACTH for 6 months and has made big improvements since she came off the ACTH in February. She is now sitting unsupported beautifully .....

We are going to New York in September to see Marcy Lindheimer who is an Anat Baniel practitioner. New York is a long way from South Africa so we are waiting until she is off the Phenobarbital before we go so she can learn as much as possible from the experience.

Let me go and see what this looks like on my blog spot and next time I will tell you why my blog is called Bellagio Dove