Jeremiah's birthday, our wedding anniversary and more school stuff

Jeremiah had a great birthday.  Here is is cake which was not made by me!

On Saturday we went to st fagins in the rain for Jeremiah's birthday treat.  It was very good but we got very wet.

Malachi was standing holding on with very little support.



Yesterday I asked the school senco for an update on the adaptations as I hadn't heard anything.  She hadn't heard anything either so she is going to try and chase her up.  The paperwork needs doing by next week so we're getting a bit tight for time now.  The senco is also not happy with the lady from the pims team who said that Isaac didn't need any adaptations because that slowed everything down.  After talking to me and getting to know Isaac she is also now seriously considering applying for extra funding for Isaac which is pretty much the same as a statement after months of people saying he wouldn't need it and me not agreeing.  We're still waiting to find out next years class allocations.  The headmaster has sent out a letter saying he appreciates the concerns of the parents but no decision has been made yet.  I hope they decide soon as Jeremiah is getting twtchy about it and is now asking several times a day.

Finally, today is our wedding anniversary and we have been married for 8 years.  I could only find one wedding photo on the computer.  Simon's uncle had been teasing me the day before saying that I would be late and I was determined to make it there on time.  I made it to the church with a couple of minutes to spare and I ended up being late because I'd forgotten the photographer would want to take photos.   

You can't see it very well in the photo but I had a cathedral length veil with sparkly bits in and a huge train.  One of the advantages of being short is the train and veil were about a foot longer on me than they were meant to be.







Wheelchair appointment

Isaac had his wheelchair appointment on Monday which went really well.  He has chosen a red wheelchair with spiderwebs on the spoke guards.  Just got to wait until it comes now, should be just in time for school in September.

Some photos of the smallest one at the children's centre who is now 17 months old!

On Tuesday we had another milestone, 17 months breastfeeding.  This time last year I was pumping and freezing while Malachi had neocate formula.  I thought this would be the end of breastfeeding but a year later I am still breastfeeding him.

Isaac has been really tired lately and struggling with all the appointments.  Going to Exeter really wiped him out and he spent a lot of the pre-school session on Tuesday lying down.  So I cancelled the occupational therapist appointment on wednesday and hopefully he will still be awake this afternoon for the school visit.

Update on us

Thought I'd better do an update post as a lot has happened in the last few weeks.  On 11th May I got a phone call from exeter mobility centre asking me why we hadn't come to Isaac's appointment.  Somehow the letter had got lost in the post, argh.  On 12th May we had my birthday celebrations, going to a new park, cocktails in the garden and out for dinner.  Then we all came down with the hideous tummy bug that was going round the school so I spent my 30th birthday cleaning up puke.

Last week was the week of appointments.  On Monday we went to the GP who referred Isaac to the orthapeadic surgeon to try and sort out what shoes he can wear for PE.  Then we went to orthotics at the hospital where they said that Isaac's feet haven't grown so he doesn't need new piedro boots.  On tuesday Isaac did preschool in the morning while Malachi and I did breastfeeding group.  The health visitor had a good moan at me for postponing Isaac and Malachi's immunisations for later in the week.  In the afternoon we went to school to meet the occupational therapist, her student, the lady from the PIMS team and the school senco.  The occupational therapist was lovely and actually asked Isaac what he wanted which was nice.  She went round measuring everything and has ordered steps, grab rails and a toilet seat.

On Wednesday morning Isaac had his school induction meeting.  We heard the same speech from the head and the teacher that we heard when Jeremiah started and we were shown a short video of what I thought would be the current reception class but turned out to be Jeremiah's year group.  On Wednesday afternoon Isaac slept for 3 hours, absolutely shattered.  On thursday Isaac was meant to be at preschool but at 11:30 they phoned me up and asked me to collect him as he had fallen asleep.  So glad I postponed the immunisations.  On Friday we had a letter from exter mobility centre and Isaac's new appointment is on 11th June.  Isaac and I have already picked the wheelchair we would like.  I really hope they agree and I'm worried they will offer us a special needs buggy or nothing at all.  Isaac hates being "babied" because of his disabilities so he won't be happy if he has to go to school in a buggy.  If we get nothing I won't be able to leave the house once he grows out of the buggy we have.

This week is half term.  A chance to recharge our batteries and get some housework done before another busy week next week.

Isaac is 4

From this tiny newborn...

...To this 4 year old.

Still can't work out how to turn pictures round!  So much has happened in the last 4 years.  I have learnt to trust my motherly instinct, to feed a baby via nasogastric tube, to always bring a book to hospital appointments, to always bring a quilt when staying in hospital, that my husband can drive as fast as an ambulance, that a buggy with a 4 year old and a 1 year old in is heavy, that an adult with a baby on her lap can go very fast down the big blue slide at softplay, that I can cope with more than I think, that I can breastfeed a baby with low muscle tone, that portage is amazing, that Isaac can do most things with a bit of help.

While I was trawling through facebook to find my then and now photos I also found this one of Jeremiah aged 2 and Isaac aged 3 months.

They look so different but the expressions on their faces are the same as now.

In other news, Isaac has his school place at St Johns where Jeremiah goes.  We have 2 occupational therapists and no wheelchair assessment.  But we are slowly moving forward.  He is going to be in a class of 23 they think with 4-6 children who have special needs.  Jeremiah's year group has 16 children in so they will probably be split up into mixed age classes again.



Back to the hospital

On Monday we went back to the hospital to see Nicola and the physio.  Jeremiah was off school with a cold and a bit of a temperature and Simon is on holiday from work this week so all 5 of us ended up going.  Nicola was running late so we had 40 mins in the waiting room (thank goodness the boys love it there because there are loads of toys.  Malachi was weighed and measured (7.3kg 67cm).  We saw the physio who said that he has made some progress but he has dropped off the physical development chart again.  She gave us some more exercises to do with Malachi.

We then saw Nicola who was really pleased with his progress and she said we could try weaning him off the drugs when he gets to 8kg.  She also sorted out the microarray test.  Isaac needed his done in paediatrics so they sent us down to CAU.  There was a long wait there so we got sent back down to peadiatric outpatients.  Simon took Isaac in to have his blood taken and I could hear him screaming from the waiting room.  I just hope they got all the blood they needed this time.  We had to go to the phlebotomy department at the other end of the hospital for ours and I didn't fancy carrying Malachi, the changing bag and my handbag all that way so Simon went to get the buggy from the car.  Simon had his blood taken no problem but after 2 goes and wiggling the needle around (ouch) they couldn't get mine so I have to go back today when the head phlebotomist is in as she used to do all my pregnancy blood tests.

Yesterday Malachi and I went to the breastfeeding group and the hv told us I couldn't bring Isaac from next week as they are changing it to non walking babies only.  I'm not impressed I have to say.  I'm going to ask the preschool if we can change Isaac's sessions so I can still go.

Yesterday afternoon Isaac's OT came round.  She said she couldn't take the highchair, we have to wait for medequip to come and get it.  She also said she couldn't discharge him without checking with her supervisor first.

That friday feeling

It's Friday and Simon is off work next week thank goodness.  We've had a busy week this week.  Tuesday we went to breastfeeding group.  Only 4 of us this week and one is going back to work on monday.  Then in the afternoon it was the time to chat group.  It was just Mel and I (again).  We decided to make sensory bottles next time for one of the physios who has recently had a baby. Wednesday was preschool and so was Thursday.  Today was my "day off" so I started blitzing the boys room.  I've also been tie dying some white cot sheets and some other bits ready for when Malachi moves from the moses basket into the cot.  I don't think the cot bedding will be dry in time for tonight but we should be putting away the moses basket at some point this weekend.

This afternoon Jeremiah was in a special assembly at school.  He was one of 2 children with a speaking part and he did really well, he spoke loudly and clearly.  Unfortunately Malachi was also speaking loudly and clearly lol so once Jeremiah had done his bit we left.

Next week Malachi has appointments with Nicola and his physio.  Isaac has an appointment with his occupational therapist (I'm hoping she will discharge him).  I have a parents forum meeting at the childrens centre so it's going to be another busy week.