I'm Sophie, married to Simon and mum to Jeremiah (10), Isaac (8), Malachi (5), Ezekiel (3) and Zechariah (2). Also our 2 little ones in heaven, Eleanor (2005) and Elisha (2011).

Jeremiah has Autism.

Isaac has hypermobility syndrome/Ehlers Danlos type 3 and uses a wheelchair for anything other than very short distances.

Malachi has hypermobility and wears piedro boots to support his ankles

Ezekiel has a cleft palate, hydrocephalus, hypotonia and development delay

Zechariah was born with sepsis and has mild development delay.

Wednesday, 31 August 2011

fun with balls

This week I've been trying to do things with the children that we won't have time to do once the new term starts.  So today we got out my old birth pool.  I thought about filling it with water but when I thought about how long it took to fill and then to empty and dry last time we used it, I decided to put balls in it instead.
Jeremiah has grown a lot since the last time he was in here


fun with balls

I thought it would tire them out but by the end of the afternoon they were more hyper than usual.  They enjoyed themselves though and even Malachi joined in.

Monday, 29 August 2011

Time with Malachi

While Jeremiah and Isaac were with Simon's mum and dad I took the opportunity to spend some time with Malachi.  I got out the play nest thing that we haven't used since Isaac was a baby because it takes up half the living room.  We played with the treasure basket which Malachi loved.  Malachi's favourite thing was playing with Isaac's keyboard.  Of course this morning when I suggested to Isaac that Malachi might like to play with his toys I got "the look" from Isaac and a determined "no I don't think so" which is the standard response to anything he isn't keen on.
Now we are into the last week of the holidays.  I know it's a cliche but it's flown by.  Next Monday Jeremiah is back to school and next Wednesday Isaac starts preschool.  I will miss the freedom that we have in the holidays.

Tuesday, 23 August 2011

Trip to the park

Today we went to Vivary park.  Isaac did a lot of walking.  Malachi went on a swing for the first time.  It's not a park we go to much as it's in Taunton and normally we go to Taunton for the shops.  The park has had a huge makeover since we were there last and all 3 boys had a great time.  We came home very tired and covered in sand.  I found it quite hard keeping an eye on all 3 of them without going cross-eyed lol especially while taking photos too.  I think I might take the younger 2 boys when Jeremiah is at school next time or go at the weekend when Simon can help.

Monday, 22 August 2011

Jeremiah - 5 years 1 month (2)

Today we were back at the hospital again, this time for Jeremiah.  His height and weight were bang on the 25th centile, exactly the same as last time.  We waited for over an hour to see the consultant.  She said that he has improved loads over the last year and she doesn't think he is on the autism spectrum after all.

Could it be that with all our genetic imperfections Simon and I have managed to produce a neurotypical healthy child?  We have made four children together but still, with our history I never thought we'd have one with no issues at all!

So the consultant has discharged him and we went off to tesco for the traditional being good at the hospital treat.

No appointments until october now, although in the first week in october we will have 3 in one week.  Just normal stuff for now.  Jeremiah and Isaac are going to stay with Simon's mum and dad for a couple of days which means lots of mummy and Malachi time and lots of taking photos.

Friday, 19 August 2011

Malachi - 7 months (2)

All 3 boys have a cold.  For Malachi this means more puking.  The muscle at the top of his stomach is loose so when he coughs he pukes.  For the older two it means whinging, a lot.  I may go slightly mad.

Isaac - 3years 3.5 months

One of the ladies from the hypotonia board put this on her facebook
What I Would Tell You…….

© Copyright 2011 by Julie A. Keon. All rights reserved.

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to— they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates……..even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

 I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people— the cashier at the grocery store or your insurance broker or even your hair stylist— will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011

© Copyright 2011 by Julie A. Keon. All rights reserved.

Thursday, 18 August 2011

Malachi - 7 months

Yesterday Malachi had an appointment with Nicola.  Weight 14lb 10oz, length 64cm all fine.  She said that if she was meeting him for the first time with no knowledge of our family history she wouldn't be concerned with his development as he is on the lower end of normal.  His tone is better than before.  She has increased his meds probably for the last time and she is hopeful that he won't need them for much longer when he is sitting on his own and eating more solid food.  The microarray test came back and shows that Malachi has some extra bits of chromasones which might mean something but might not.  Isaac had the test done in 2009 but after a long time of faffing about they decided there wasn't enough blood to do the test.

I talked to the nurse from genetics today and Simon and I need to have the microarray test done to see if we have the same abnormalities that Malachi has.  The speed of testing has increased over the last 2 years so the results should be back in about a month.  We then have to decide whether to have Jeremiah and Isaac tested or not.  We will see the genetics consultant in about 3 months.

Thursday, 11 August 2011

Malachi - almost 7 months

Malachi will be 7 months old tomorrow.  He isn't sitting on his own yet but he is more stable in his bumbo these days.  He weighed in at 14lb 9oz this week.  Off to see Nicola (consultant paed) next week and phone appointment with genetics as well.  It feels like everything is coming together and I finally feel that these early days of panicking are over.  It took nearly 2 years to get to this point with Isaac so this is really good progress.

Not sure what we are going to do with genetics.  We are going to the appointment with an open mind and we'll just see what they suggest.  I don't know if it will benefit Isaac and Malachi to have a diagnosis or whether it is worth persuing or not.

Sunday, 7 August 2011

Monday, 1 August 2011

Malachi - 6.5 months

My gorgeous boy, growing up fast
We saw the physio last week which was really positive.  Physically he is now on the lower end of normal and she thinks he will be sitting on his own soon.  We see her again in 3 months and then hopefully he will be discharged.  On Wednesday we met up with the hv who was a bit negative and burst my bubble a little bit.  She wants him to go to TOG and have more physio. She says he is very small for his age.  I think he is doing really well.  Putting him more upright in the buggy seems to have helped the puking or maybe it's more time spent at home now it's the holidays.  Weigh in tomorrow.  I think he's grown quite a bit but we'll see.  I managed to get his milk delivered this week as well which has saved us several very long walks.  Because of the nits on tuesday we had to cancel Malachi's appointment with Nicola so we will be seeing her again on 30th August.

Jeremiah - 5 years 1 month

Jeremiah built this at the weekend.
It was bigger than this, there is a section that went under the table as well.  I was seriously impressed.  It's the first time I've seen one of my children do something and I've thought I couldn't do that.  Although Isaac can bend over and put his head through his legs and I can't do that either!