Tuesday, October 16, 2012

Says it all

Thoughts of a Mom
By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars

Tuesday, February 14, 2012

Results and a special birthday

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.

Monday, January 23, 2012

MRI and EEG this week

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….

Thursday, December 22, 2011

I hate Epilepsy!

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!!!!

Thursday, November 17, 2011

Photos.. finally

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

Friday, November 11, 2011

Whats been happening ....

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...

Thursday, October 20, 2011

A stunning daughter

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!

Monday, October 10, 2011

A new approach

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?

Monday, September 19, 2011


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!

Thursday, September 8, 2011

Back at work and on the blog

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.

Tuesday, April 26, 2011

Long overdue update

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

Wednesday, February 16, 2011

I'll be back

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....


Thursday, December 23, 2010

A Special Mother by Erma Bombeck

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."

Friday, December 3, 2010

Bella and Max horseriding pictures

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.

Tuesday, November 23, 2010

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

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.

Saturday, October 9, 2010

Its a girl!!!

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!!!

Tuesday, September 14, 2010

Eye examination

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!!!

Wednesday, August 25, 2010

Please comment on Toys R Us Differently-Abled toy catalogue

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

Wednesday, August 18, 2010

Neurologist appointment

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?”

Friday, August 6, 2010


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!

Thursday, July 22, 2010

EEG Results

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.

Wednesday, July 7, 2010

The 8th of July again

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.

Friday, June 25, 2010

After a 3 month Siesta...

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....

Friday, March 12, 2010

A yellow hula hoop

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.