Play the cards

Yesterday my son L had an assessment with a paediatrician. Two weeks before he had one with an occupational therapist. He has coordination problems and learning difficulties. After reading the report from both the school and the OT and completing her own assessment she thinks it’s most likely that he has a neurological disorder called dyspraxia. He will need to see a neurologist, have an educational therapist assessment and maybe blood tests before she will give a definite diagnosis. I decided to look up about Dyspraxia and found this.

“A diagnosis of DCD is then reached only in the absence of other neurological impairments like cerebral palsy,[11] muscular dystrophy,[6] multiple sclerosis or Parkinson’s disease.”

I was wrongly diagnosed with Dyspraxia myself. It was obviously early signs of MS. Back in the 90s childhood MS was unheard of. Right now I’m putting the idea of my son being diagnosed with MS to the back of my mind and I’m just playing with the deck of cards I have.

The Doctor also bought up that it would be good to idea to try and get L an educational health care plan (EHCP). With this in mind I spoke to the schools special educational needs coordinator (SENCO). She had read between the lines of the OTs report and felt that she thought he had Dyspraxia. As for the EHCP we are on the right track now with getting reports but it will be 3 months before they can apply. In the meantime we will just keep doing our best for him.

Nursery

First blog in a while. I’m a bad blogger but I’ve downloaded the app so I’m hoping that makes me better. Sweet P started nursery this month. She has taken to it very well. L went there too. So I know the staff. That made it easier for me to leave her. I’m sure she will be bringing home lots of paintings soon. When I pick her up she literally shrieks with excitement and runs to me with arms open wide. It’s nice to see she misses me as much as I miss her. Since starting nursery she will now let me tie up her hair and put clips in.

I’ve been asked what are you doing with your self now?”. Like I have all this spare tiny. I tidy the flat without being disturbed. I volunteer. I have honestly not caught up in any tv. The box set I got for Christmas is still unopened. Late last year she stopped napping too. This means she is breastfeeding less. Progress.

Bang

I hate this time of year. Guy Fawkes night AKA bonfire night AKA fireworks night. The picture above is my dog Rocky. He is a 10 year old Staffordshire bull terrier. He has a major fear of fireworks. As I write this he is in the bathroom as it is the only room with no windows. We have tried putting a blanket over his crate but that didn’t work. He destroyed it trying to escape from it. He has lost teeth as a result of this kind of behaviour and cut open the pads on his paws. One New Year’s Eve we came home to discover he had ripped a kitchen cupboard door off and emptied it so he could hide inside of it. We have tried those deffusers but they did not help. We have tried a drug called calmex but that didn’t help either. This time of year we have no choice but to medicate Rocky every weekend. This weekend we are trying him on something different. A drug called sanex I think that we will use along side the calmex. If that does not work we will have to go back to using an oral sedative at home for him for everyone’s safety including his.

If your pet is perticuly stress by fireworks please seek advice from your vet.

Mummy. Mummy. Mummy!

Mummy I’m hungry. Mummy play tag. It was 7:30am! Mummy I need a drink. Mummy I watch Moana. Mummy. Mummy. Mummy! I even had a painter that was round painting my bedroom sarcastically call me Mummy. I once counted 20 plus times in an hour. Why is it always Mummy? It’s never Daddy. Well sometimes but not nearly as much. My husband answered this question perfectly. “If they said Daddy all the time you would hate it”. Of course he is right I would. I love that they need me. I love that they want me. One day I will miss the contant calling of mummy and it’s such a privilege and blessing to be one. So children don’t worry mummy is here. What do you need?

Growing pains

L has been going on for weeks about wanting his hair cut short. He has never had more than a trim before. I don’t know where this idea has come from? I loved his hair. It was cool. He wasn’t like every other boy. In fact it was not unusual for him to be mistaken for a girl. With school starting back this week we knew he needed his hai cut. Being 6 we knew we had to let L cut have his hair cut the way he wanted it. I mean if he wanted to dye it blue we would of objected.

Yesterday he went with his Daddy to the barbers so he could watch what was going to happen. “Are you sure?” Asked the barber. L was very sure. I didn’t go. I could not bare to watch his long locks fall to the ground. When the door knocked I planted a smile on my face with tears my eyes that went unnoticed by L but not by my husband. L loved his hair. Lots of comments on the picture we posted about how grown up he looks. He didn’t look different now. He had hair like any other little boy. It’s bitter sweet watching them grow. It’s a blessing but it’s oh so hard. He is making his own choices now. He has his own ideas about what he wants. Ideas that are different from mine. But if his Pokémon, spider man, Maui ensemble last week was anything to go by he still needs a lot of help and guidance from mummy.

Breastfeeding with MS

When I first fell pregnant with my son I didn’t think breastfeeding would be a good idea and that I should just go straight back onto medication for my MS which at the time was Rebif. Then information came out that suggested that breastfeeding could reduce your chance of relapsing. I believe they later discovered this not to be the case. So I gave it a go. It was not easy to start but I got lots of support from the midwives. 8 weeks after Ls birth I relapsed. It was rough. My left arm and leg were numb. It lasted 5 months. I then had another when he was 8 months. This time I went on steroids which meant I was unable to feed him for four hours after taking a dose. Please seek medical advise if in this situation. I also tried to wean him off the breast but he would not take a bottle. We tried lots of bottles. He would not accept milk in a cup either. So I just continued to breat feed him.

Fast forward to when L was nearly 3. I feel pregnant again. I was still breastfeeding but my milk dried up about half way through my pregnancy and L lost interest. I later gave birth to a healthy baby girl who I will refer to as sweet P. I decided to breast feed her too but this time a was prepared. I started giving her a couple of bottles of expressed breast milk from 3 week with a view to start formula feeding her at 4 months. My sweet P laughed at my plans and very suddenly started refusing bottles at 4 months.

Now I’m breastfeeding a nearly 3 year old sweet P. It has been decided once she is no longer breast feeding which she only does now for nap time, bed time and through the night, I will start tecfidera. I can’t breast feed on this medication. You can breast feed on Tysabri but my MS is not active enough for this drug. I know I will have to stop feeding her soon to go back on medication. My neurologist explained it to me like this relapsing is like a car crashing.    If you keep crashing there is a good chance one day you won’t be able to get it fixed.  More than half of people with RRMS will go on to get secondary progressive MS. Which means I will just get worse and worse. So I know I need to stop breast feeding soon. I know it will be hard because it’s all she knows. That’s how she falls asleep. I don’t regret breast feeding. It’s meant I’ve not had to prepare bottles at times where I can’t feel my hand too well. I’ve been able to regularly sit down take a break and feed.

 

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