Its been a busy week!

Its been a hectic week, but thats how we like it. Frankie had a physio lesson Monday, he now has his new boots, these are specially measured and made for him by the hospital and his standing frames height has been adjusted so he has been weight bearing this week. Not sure on how much he likes the change of position, but time will tell. As usual Lottie was present for his lesson, she to wanted a go, trying to explain to Lottie it isn't a toy and she can actually stand alone without the support of the standing frame is hard work, but luckily she gave in and was happy to stand opposite him and amuse him with toys whilst the physio and i worked on head control.

Tuesday the decorating started, with Lottie refusing to move into the larger room, for her reason being "this is my room, not that one" i decided i would get it done sooner rather than later and if for any reason she changes her mind the room will be painted and ready for a nursery for baby. The morning saw the walls all pained yellow, its quite a small room so i wasn't sure on what colour would work well and with yellow i knew it wouldn't make the room and smaller and would keep it airy, however by the end of the day the walls were lilac. Save to say the yellow just didn't work for me, or the room! Lottie again was happy to help out, she had her own brush and even had a little go with the roller. The room still isn't finished and I'm in need of some ideas and new curtains, but nothing is coming to me just yet. Any ideas? Lottie wasn't best pleased she couldn't sleep in her room that night, but telling her she could paint again tomorrow seemed to do the trick.

Wednesday brings comic book day! Lottie and Brady are the geeks of the house and love anything nerdy!! So we took a trip to Cambridge to Forbidden Planet. Lottie as i knew she would be was in her element with all the adventure time bits, she kept asking Frankie what he would like and if he would like his own or to share with her. Snapped a couple of photos whilst i was there which make me laugh every time i see them. This girl is going to be just like her dad. 

Thursday we stayed home and had a play day! The play doh came out and some Toy Story wrapping paper Lottie randomly found came out, both of which Frankie loved. He hasn't always been great with having to hold things or having things placed in his hands. Many times i have had to explain to people when they touch his hands and he pulls away its not him being rude, its just reflexes and it scares him. Lots of forms of contact still worry him and i think that can only stem from when he was a baby and being prodded and poked so much. Frankie needs to know your their and that he feels safe around you before contact anything abrupt of fast paced he cant handle. He is currently waiting for some splints to be made to help him keep him thumb out and to allow his hands to stay open. He tends to keep his thumb tucked under his other fingers, like a fist. His arms and hands although he doesn't have control over are one of the only parts he can move himself so when he has something in his hand and their raised he cant see what he is doing and loves it, paper, balloons, material anything simple he loves.

Friday started off a bit up and down, Frankie was due to go back to creche after the summer of but unfortunately he wasn't 100% and with him heading back to nursery on the Monday i wanted to keep him off incase he needed to see a doctor and get a course of antibiotics, luckily by later afternoon he had perked up and came out of his mellow mood. We checked out the halloween decorations after doing the weekly shop, i have added many things to my list for the party already. We are big halloween fans in our house, as many of my close friends know or who have been to our halloween parties. Lottie is a better age this year and loves pumpkins and anything "scary and rah" in her words. Not sure what they will both be dressing as this year but i can imagine Lottie will pick up something crazy and have them both dressed as something that Daddy will find scary.

After a busy weekend of getting the babies nursery sorted and both of them ready to head back to nursery i am pleased to be getting back into more of a routine, all good practice when baby no 3 arrives. Here is to hoping i don't forget one of Frankies million bags to start the new year at nursery tomorrow. Their last week off seems to have been filled with lots of smile and laughter, now much more i could ask for. Two happy children. One happy mummy  :-)

 

Catch up.... it's been a while!

I am back, its only been five months! I cant believe how much has happened, Lottie turned two, thankfully not a terrible two, Frankie is due to have another dose of botox any time soon, both my babies have started nursery, i have started my driving lessons; better late that never, we have a new car; my back is thankful for this, Frankies car seat finally arrived, we are having a baby; another little girl and last of all we moved house, back to Spalding, into a house that holds many special memories of mine.

Busy busy busy! 

  Lottie has shot up and is now talking in sentences, i sometimes forget she is only two. Time really flies when you have children. Lottie has continued to be an amazing little sister to Frankie and i cant believe how much she wants to help and care for Frankie, he is always top of her priorities and i couldn't ask for anymore from her.

  Frankie continues to go from strength to strength, he has changed so much this last six months, he's gone from my baby to a little boy, his sight and hearing has improved significantly and its been amazing, its so lovely to see him turn his head towards the door when his daddy gets home and to get some enjoyment out of the programmes Lottie makes him watch on the iPad :) Hes due to have some more botox as his last lot has started to wear off now and we've been having to up his medication to keep him from getting cramp and being in discomfort, which isn't a long term option, so needs be with botox. He is also having his salivary gland injected at the same time, the thought makes me wince, but he will be asleep and i know it will help reduce the amount of saliva he produces and lower risk of choking, which is a god send when you have a child that doesn't know how to swallow and hates the suction machine. With this being done we can also stop giving tablets daily and the patches he has worn since birth to help wont be needed anymore, thank god, as they like to fall off and take a swim in the bath.

  Nursery, one word, amazing. I really couldn't ask for anymore from the nursery Frankie attends (feel free to ask any questions about it, its highly recommended) As some of you may know Frankie attended the Garth School for several months but i just didn't like it or feel comfortable sending him, as much as we were advised not to send him to a nursery all i can say is "we know best" and it was the best decision we have made. I wish he never had to leave. He has everything he needs there, from love and care, to equipment to constant entertainment and most of all all his little friends :) they all accept him the way he is and all have reacted so well to him for children so young. Their more mature than some adults i have come across since having Frankie. Its the only place he goes that i feel 100% safe leaving him and thats so, so important to me. Frankie's one to one is amazing and i couldn't ask that she did anymore for him, she knows him inside out and the relationship they have makes me feel so relaxed. Frankie may have brain damage but i know who he is happy being in the company of and she is certainly in his top three, along with his mummy and daddy. Oh and Lottie :)

  New car, this may interest me more when i can actually drive, which is coming along as fast as i can fit my lessons in, who knew driving slow was hard work, Haha. The car has been a god send for my back, making it so much easier getting him in and out and all his equipment and wheelchair fit in the boot, i can even change him in there, perfect when we are out as no changing table is long enough for an almost four year old in nappies. Frankie's car seat has arrived, i cant even express my relief and happiness about this, it took 7 long months, the price went from £700 to £2400 after they said he needed so many extras and a turntable (i shall upload photos of this Monday, with Frankie as a model once JCM have been to fit it) but after a lot of waiting and faffing its here, i did however have a small issue which seems irrelevant in the long run, but i did ask for blue and it came in red, so here is to hoping they are able to change it to blue, after all it needs to match with his new boots and feeding bag. He is a Chelsea fan!!

  New home, new baby they say; well i suppose you could say this was partly true, but the move made sense, we were coming to Spalding daily anyway and now we are all settled, we couldn't be better. The house is bigger and more open plan and getting Frankie around in his wheelchair or Triton is so much easier. New baby, another little girl, due end of November. Pregnancy is flying by and at 25 weeks i have just under 3 months till baby arrives, yes if you do the math than doesn't add up i know, but we are having a planned elective c section a little earlier than usual, less worry for me and less for Frankie, else he may have to share his birthday, haha. Looking forward to having a baby shower in November too, something new for me and great to get together with the girls. 

  Here is to the next few months being much as the last, a happy, healthy Frankie, Lottie making me smile daily the things she comes out with and a easy c section, quick stay in hospital and a healthy baby. I shall keep you all updated. Feel free to ask any questions.

P.s Nikki, this is just for you: Thank you for singing Lottie to sleep tonight, she is still fast asleep now. Xx

Long time no blog...

It feels like forever since i last posted, in reality it has probably only been a week or so. Never the less i am back, my absence was due to Frankie, as you may have gathered. It would seem all wasn't ok after we left hospital, typical really, he was completely fine the evening after his botox, but several days after Frankie started to get poorly, since then he just hasn't returned to his normal self. I feel like he starts getting there, then we take three steps back. It seems everything has been put on hold this past week or so. The only thing i have had time for is sick, poop and a grumpy little boy.

We did attempt to take Frankie to an appointment he had this week, to get his feet measured for his new boots so he could get back into his standing frame. But it would seem he just wasn't ready, ending with him vomiting on the journey there, all over himself, his car seat, the feeding pump, the suction machine and the car!! This boy does nothing by halves. So leaving us no choice we headed home, and missed the appointment. I can imagine they shall be quite annoyed Frankie "wasted an appointment" but what did they expect, for me to arrive with Frankie soaking in his own sick, to then go back to my car that would have stunk to put him back in a sicky car seat, i think not. Some professionals will never understand.

Luckily Frankies physio lesson today went better, it was at home, that could have been why. He co operated with the stretches, which have become quite intense and uncomfortable since the botox. They say it will help the botox last longer, so if that means not having to put him to sleep and stick needles in him so often, then i am happy with that. Its often quite uncomfortable with physio's, you want to let them do their job and not get in their way, but they want you to watch them do what you do every day yourself. Awkward. Brady is the physio and massage expert though, so i think Frankie is secretly pleased when his physio's leave and he gets his Daddy back.

Frankie has a follow up appointment Thursday at Peterborough Hospital regarding his botox, so here is to hoping all is well and they are pleased. Then Friday the busy boy is to look at a new car seat, this i am sceptical about. Its hard to accept that Frankie will always need to be in a car seat or wheel chair in the car, this is most certainly not made easier by the sight of them! This particular car seat they think is suitable for his needs is named the "Carrot" car seat, with the hefty price tag starting at around £700 you would have thought they would of at least made them look nice, but having seen this one on the internet already, they haven't. All i see is 'a carrot' I shall defiantly be looking at getting this covered in some Toy Story material :-) or maybe Batman if Brady has anything to do with it.

Will peace come at the weekend? I doubt it. Buy hey, we got through another week and thats the main thing.
This week has become a bit of an eye opener to me, it has been one of the hardest weeks since Frankie was born and after reaching out for help i have learnt who the people are i can truly rely on and understand how hard Brady and I work with Frankie and the others than put themselves first and don't care that we were suffering and in need of a helping hand. This wont be forgotten. So thank you for showing your true colours and to the one and only person that helped, i can't thank you enough. You know who you are.

Sometimes you just have to laugh.

I have been waiting and waiting, unfairly waiting in my opinion. Now i am sure most of you will have heard of "The Blue Badge" something old people have right so they can park anywhere? Well yes, this is partly true, but there is more to it than that, these aren't handed out as easily as people would probably think.
From day one we knew Frankie wouldn't walk, given his diagnosis it was obvious. Three years later, Frankie is finally eligible to apply for one, well i am on his behalf. So i set too it, all 16 pages, now i fill out hundreds of forms for Frankie a year, but this one asked me what Frankie COULD do rather than COULDN'T.
Could he walk the length of a football pitch? Can he walk to the end of the road? Can he walk to the end of the drive way? No is the answer, no was the answer to most of the 16 pages, so you would think, how hard can it be, but no isn't a good enough answer. Why is it a no? Can that change? In what time frame will that change? Let us know as soon as it changes, ok ok, slow down, he hasnt even been awarded it yet.
So, i set about writing on every single question, the same thing, why he cant walk, what he requires to get around, who he requires, what he has to take with him, what ever it is from me they need to answer their questions, i give. Thats that done, but because the majority of the form was answered "No" they need proof, proof from professionals, not i know they need to make sure people aren't claiming for these who shouldn't, but they still do.
They obviously don't realise how hard professionals are to get hold of, my Occupational Therapist for example was off they day i phoned, then it would be the weekend and hopefully she would give me a call *sometime Monday* she called me Tuesday and i finally received it via post Friday, great i would be posting this over the weekend. My physio was off on paternity leave. And the one from Frankies consultant i had to send Brady to Peterborough Hospital to fetch. Will things ever go smoothly?
You would have thought that would be all they needed, its only a badge after all, but no, they wanted a copy of Frankies birth certificate and another form of proof of Frankies address, yes, because my son regularly gets post and finally proof he was awarded higher rate of mobility, obviously he had been awarded this, you cant apply for a blue badge if not, how stupid do they think people are, or how stupid are people, thats my question?
So after hopping along to find a photocopier in the little town of Crowland, of which i had no idea how to use, thank you co-op worker for your assistance, i was nearly all set. I just needed a passport style photo of Frankie, with a white background, getting any child to sit still is hard enough but when your child cant sit, nor will their wheelchair fit into a photo booth this became a problem. In the end i just sent an ordinary photo with Frankie sitting held up on the sofa, all this for a photo that sits on the reverse of the blu badge.
Quite pleased with myself for going insane throughout the blue badge form, Lottie and I skipped down to the post office, yes i was that happy it was finally done, we paid the £3 it cost to send of which i dint even batter an eyelid, i just wanted it to arrive with them and be sorted. Finally it was done and we tottered off home.

About a week later i received a letter from them, i thought blimey that was quick, i expected it to take 6/8 weeks, there was a a problem, what more could they bloody want from me, well.....now this is slightly embarrassing but in a way a relief, i had forgot to sign it, sign it!! 5 bloody letters and it would have been done.

Angrily signed at my annoyance i shoved it in a envelope and this time begrudgingly paid for it to be posted once again.

Here it to hoping after all my hard work, along with my stupidity, Frankie will be entitled to his blue badge! I shall let you all know soon :)

Thank you for reading :-)

Is he tired?

If i had a penny for every time i heard this, i would be a rich woman, ok maybe not rich as i would like, as i would have to share it with Brady, as i am nice like that, but still, nice and comfortable.
So, why do i get asked this?
When we go out with Frankie you have to options, you haul his wheelchair out, or you cary him, now both are as much work as one another, the wheelchair is heavy and takes some putting together, Frankie is heavy and his body is far from all together.
Due to lack of head control he is floppy, a bit all over the place to say the least, but nevertheless he loves it when his Daddy scoops him up and puts him in his arms and Frankie's little face bops up and down on his shoulders. I am more swayed to using the wheelchair, as heavy as it is, its all in place and his feeding pump can be hooked on and the suction machine has an in built tray underneath, what more could a mummy of a disabled child want/need, its perfect, ok this mummy wouldn't say no to a new pair of shoes, but i hardly think the wheelchair service will :(
Frankie takes Baclofen , a muscle relaxant medication medication, via his g-tube, this can at times leave him a bit drowsy and hey, he isn't you average three year old with colour in their cheeks and all raged up because the have thrown a paddy, he is a mellow three year old who's only source of entertainment is what you show him.
Yes he often looks sleepy, yes when i am going around the supermarket and he is in his wheelchair and people say to me "Oh bless him, has he just woken up?" "Is he tired?" I just want to scream, what do you say, what would you say if it was you?
I have two options, "No actually he is disabled so he constantly looks this way" - which would spark off the questions, I haven't got time to stand at tell someone Frankies life story, food shopping is normally focused around Frankies feeds, appointments and when he is ok to travel, plus really, do they really care to know, did they just make that comment as i caught them staring at him? In those cases they want a simple "Yes" from me? They don't want to feel awkward for staring and normally want a swift exit. Luckily to save their embarrassment i give a simple "Yes" , unless you catch me on a bad day and then you may have you ear bitten off.
Knowing some people they probably take one look at him and think i keep him up all hours, allowing him to watch the tv, how wrong can they be!

Life with a disabled child.

We have been attending appointments for Frankie from day one, it was made clear he would need therapies, appointments, meetings, back then i never really knew it would be as much as it is now. All of which are still in place today, he is a busy bee, he hardly stops, which means we hardly stop, but anything to help him and ease any pain he has is most certainly worth it. To any mothers reading this you will know you do everything to help you child, to make sure they are happy, healthy and safe, for some parents this is easier than others. I will admit, i do find it hard to understand some peoples concerns, i know we all love out children dearly, but a cough, cold isn't going to kill them.
When Frankie gets a cough, its not easily sorted, as many of you know Frankie is fed via a gastrostomy tube, a tube operated into his stomach, of which he is fed milk 4 hourly on, so when a cough appears Frankie is often sick, he coughs so hard using stomach muscles strangely, i now that sounds a little crazy, but give it a go, a cough u feel in your throat is alot different to a cough you heave from you stomach, our benefit, knowing the difference and when each one is relevant, Frankies misfortune, not knowing.
So there is the sick, oh those four letters, that small four letter word, i would have to say i am relieved of a day when i don't have to spend it cleaning up sick off my sofa, a bed, my carpets.
A lot of my friends who have children i notice will write on facebook of course :) that their children are poorly, that they are up in the middle of the night washing/cleaning their child and their bed, i feel for them, maybe it harder this only happening every once in a while, but let me let you in on a secret, i do this, many times a week, week in, week out, but hey if i informed you all of that you may find me a little boring right, or maybe i would be seen as attention seeking, who knows, peoples opinions are all different!
So picture this you are half asleep, you child starts vomitting, you run to him, well not all that far, Frankie sleeps right next to our bed, its lovely to wake up to his little face but his snooring, jeez, now that i could do without :) but anyway, out comes the suction machine, now i am not sure how many of you have heard of one of these, my description, a large, noisy, machine that saves you life, well in this case Frankies. Frankie has no gag/swallow reflex, so when sick comes up, sick can not go down, not does he have the capability of aiming it anywhere, so out comes the suction machine, lovely name it has *devilbliss* really, who thinks of these names?
Now suctioning a child who has not body movement/head control/understanding of the situation is hard, to how a child still and stick a tube in their mouth and up their nose isn't something we want to do on a daily basis, but if it saves them from choking and worse things happening then you would do it right? This suction machine and i have a love hate relationship, i love how it have saved Frankie from aspirating, swallowing anything into his lungs, but i hate how he fears it still, after three years. So with all this going on you find yourself having to change bed sheets, normally the ones you have only just got dry and put onto their bed just before bedtime. Changing Frankie, as most of you also know Frankie had Cerebal Palsy, the down side of this when changing is mainly the fact he is stiff, but also the fact he had no motor skills, he cant pop out his arms to help me out, he can't raise them above him head to help me get him dressed faster, he is my "very large newborn" making dressing/undressing a lengthy process.
The list goes on with Frankie, but i have given you a little insight into Frankie and his ways. When you think you tired when you child is sick, next time think, at least i know its not likely to happen again for a few months, enjoy you sleep for those next few months because i, along with other parents of disabled children will be saying to ourselves, thats over for tonight now, no more sick/problems until tomorrow.
He is a brave boy, he goes through all this yet still has a smile on his face and fights every day to everything that is thrown his way. I couldn't be more proud. He will never know how proud i am of him, or even what proud is, but thats ok, i can deal with that, as long as he continues to do what he is doing. On this note i leave you, i can hear Frankies snoring and he is due for a feed, so off to get his medication, milk and suction machine and hope for a good night, before the madness tomorrow! Night night. X

P.s I added a few photos of Frankie in bed on happier days, one is at the hospital, yes he did take his toy story blanket and toys, thats just how he rolls, but i thought you would appreciate these more than pictures of sick, haha.

UCLH - The future started here

This is the second part of Frankies story, the second place he had ever been, the second hospital he had been in, the second day of his life and most difficult, the second day i wasn't with him.

Frankie was barley 6hours old when he was taken from Kings Lynn Hospital to University College London Hospital (UCLH) he required a therapy Kings Lynn didn't offer, due to his 'hypoxic ischaemic encephalopathy' (HIE) he required 'cooling' , this is where they cool the brain for three days at 32degrees celsius to prevent and further brain damage, or death. This had to be done within 6 hours of birth, now i have yet again done a little research about this, but again it is complicated, so i explained it briefly and in easiest terms.
As Frankie left my bed side, in his large incubator, loaded with many different drugs, not only did i feel like i had not seen or met him properly, i feared so badly that it would be my only and final memory of him. But he is my boy, a brave solider and he made it, he made his first journey, just like he continues to make them everyday.
He had been christened before he left, Frankie Joe Smith, a beautiful name for a beautiful boy. Frankie left, our family's started to fade out and it was just us, two new parents, together, yet so alone, without our son. This was to be the first nights of many we spent away from him, most people are impatient to get home from hospital and start their family life in their own home, i know i was with my daughter, in and out in 24hours and even that was too long for me. The hours past and we waited in anticipation to hear from UCLA, there were no words, so we sat in silence. The moment the nurse walked through the door was sound to my ears, Frankie had made it safely and was in the best hands. I desperately wanted to be with him, i feared he would pass and my only memory would be of seeing his small body, his face mainly where his lips chattered like he was shivering.
I wasn't allowed to leave the hospital or travel, i had only had an emergency c section 6 hours prior and it wasn't 'safe' what did that matter to me though, i needed to be with my son, like any mother would. Time went so slow and was filled with nothing, emptiness, waiting, 9pm turned into 1am, the hustle and bustle of a busy ward could be heard as my door was occasionally opened when i was checked on, but other than that just silence, i was so tired, but i couldn't sleep.
Morning came, the day after your baby is born you expect congratulations once you have shared your good news with you family and friends, but what was there to congratulate, you expect cards, but what would people write in them, you expect your baby, but he was 100's of miles a away.
We spoke with UCLA that morning, i was desperate to see how our little boys night was, i had had nightmares without even being asleep about his first night there. I remember my mum writing down what was said in the call, being on morphine for almost 14 hours at this point i was all over the place, it was lovely to have it to look back on, i still have it, every time i read it it makes me realise how far Frankie has come. The nurse explained to me that we needed to be there, he needed his parents, we couldn't hold him, touch him, kiss him, but just being there would be a benefit to him. I was more than ready to go, however it seemed that if i was to go i had to go stay on the "maternity ward" and there wasn't a spare bed, there was probably someone that had been in hospital for a week after having their baby and milking a few extra days, but they couldn't fit me in, a mother of a child that could pass away and second and i would have been a hundred miles away. This when i look back makes me rage!
So yet another night i spent without my son, i told Brady it was best for him to go to be with Frankie, there was nothing he could do for me, i was inconsolable, nothing he could say would make my son better nor change the last 24hours, but at least Frankie having one of us by his side would make me feel that little bit better.
The pictures are the ones i received of Brady when i arrived. My emotions were shot to pieces, i was so pleased Brady was there with him, i was heartbroken to see how much equipment surrounded him, so alone i lay there thinking of our future, i pictured Frankie in a wheelchair, i thought about the care he would need, if i would be good enough, if i could cope and how it would effect Brady and I as a couple, were we strong enough, then i remember just laying there i just cried and cried and cried, until i fell asleep, exhausted.