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."

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.

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.

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!!!

Can you spot what is new on my blog?

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!!!

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

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?”

Questions...

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

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

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...

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

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

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

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

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

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

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

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

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...

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

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

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.