I has been a rollercoaster day. I took Jamie to the dr yesterday and he has a chest infection and is on antibiotics.
I then had to take him back to the hospital today to have bloodwork done again for RAST testing. He had bloods done on the 19th Dec, but something went wrong with the test, so he had to have it done again.
Then, mark & I got into a fight with our neighbour. She is asking for money because she had to pay to have the glass in her door replaced, supposedly because the builders damaged it when they built the extension. Needless to say, she turned into a neighbour bitch from hell and she won't see a penny from us (besides the fact that it is not our responsibility to pay for damages caused by the builders)
Then I heard the worst news. Jamie's little Keiran has becoome a beautiful angel. I can't stop crying. It is amazing how you can come to love someone you have never met, and yet the grief I feel is tangible. I so much wish that there was something, anything that I could do to help, but I know that nothing can take away the pain of losing a baby.
Sweet baby Keiran. You touched so many people with your strength, your determination and your spirit. I know that you must have been so tired. I hope that you can sleep tight, safe in the knowledge that you are very muched loved, not just by your mommy, daddy and family, but by the many lives you have touched. We will miss you always. Good night, God Bless. xxx
Well, here we are, February 14th. This day is no longer Valentine's day to me. Today is CHD awareness day. Today is also the day that we got on this crazy rollercoaster. I can't believe that it has been a year already, it only seems like 5 minutes. On Feb 14th last year, Jamie was hospitalised for a week to investigate more thoroughly his failure to thrive. Although we didn't find out about his heart condition for another 7 weeks, this was really the time that we got the ball rolling and stopped beating about the bush, hoping that he would suddenly start putting on weight and acting like other babies his age should. It was at this time that the dr's decided once and for all that they COULD actually hear a murmur and refered us to the children's hospital.
Apart from that, we are having the usual problems, allergic reactions caused by Connor leaving allergenic food around the place, Jamie is not sleeping well and seems "off". I can't put my finger on what is wrong with him, but even Mark mentioned it the other day.
I suppose I should go and enjoy the solitude after taking 2 hours for Jamie to go to sleep.
I had an appt to take Jamie to finally get his allergy test results today, and the appt didn't go as I had hoped. Jamie's RAST came back positive for milk (all dairy), eggs, nuts and wheat, but negative for fish. Not sure about fruit as they don't include it in the paed screen. Needless to say I looked a little like this :shock: I had visions of my poor little guy starving to death. The paed then told me that he will get his food on prescription, wheat free versions of pasta, bread, biscuits, flour etc and possibly milk as well. He did say that his wheat allergy came back as a weak positive, but that I should probably still avoid it anyway if I want him to outgrow it. We aren't sure about soya milk, but he has a 50% chance of being allergic to that too. The other bad news is that he wants Jamie to start meds to help his body react less if he accidentally gets hold of bad food. He is now going to transfer Jamie's care over to his NHS clinic so we don't have to pay anymore..... just one more specialist to add to his list.
Oh, and he wants me to try Connor on a wheat free diet after I explained that he suffers from bloating and pooh problems. I guess there is a strong possibility that Connor is allergic too.
Just something else to get my head around. Have to admit I am scared at the thought of a nut allergy.
Gosh, it has ben a while since I updated. To be perfectly honest, I have mainly been lurking. I really don't feel like posting much and am just in a funk.
It is quickly coming up to the 1st anniversary of Jamie's dignosis and subsequent surgery. I am feeling highly emotional, swinging from being sad and weepy, to being extreamly angry. I wouldn't change anything about Jamie, including his problems, but I know that I haven't fully come to terms with things either.
The girls on my board, as much as I love them, will never truely understand how I feel. All their Jellybeans are perfectly healthy, they don't have a cloud constantly hanging over their heads. Don't get me wrong, I don't obsess about Jamie's condition or about the future anymore, but it is always lurking in the back of my mind and is impossible to forget about.
Next month is our first appt free month of the year! Jamie will have an appt to see the dietician in May, the cardiologist in June, his paed allergist in Juy and his regular paed in August. Not sure what will happen after that, I guess it depends on how his other appts go.
As for Jamie's new diet, we are pladding alonng with it. It has taken some getting used to and the poor child doesn't get much variety right now as I am still not 100% confident with what I am doing. Every morning for the last week, I have got the regular milk out of the fridge to put on his breakfast, thankfully, I have always noticed before pouring the milk, lol! We did have a dietician appt last week to get Jamie weighed and he had gone from 23lb 6oz to 22lb 7oz, so lost almost a lb in a week. We have attrributed this to the lack of biscuits he is eatting as the wheat free biscuits are expensive.
I guess I had better rubn, it is creeping up to time to put the boys to bed and it is down to me tonight as Mark has gone out.
We went to a 50th wedding anniversary party last night. It was nice to see some family that I haven't seen since before I had Jamie. as a matter of fact, someone came up to me and said to Jamie, "Hello, I've never met you before!"
The boys had a blast. Most people didn't start dancing until after the buffet, so they had the dance floor all to themselves. It was great to see them struting thier stuff, they seem to captivate everyone who saw them. Having said that, Connor did do some VERY special dancing. He was trying to capture that attention of a 5 year old girl there, lol!
What did bug me and made my night a bit of a living hell, was that the tables were very low and in the middle of every table was a bowl of peanuts!! WTF!!!! Thankfully, we only had 1 incident where Jamie grabbed a handful of peanuts, but Mark & I jumped on him straight away and he dropped them all. He was sobbing his heart out, I know that we scared him. We took him to wash up and get him some of his own "safe" food. Scaring him did the trick though, he didn't go near another bowl of peanuts..
I need to order some egg replacer. I want to have a go at making my own bread and also make the fab cake that I found in the new book I got from amazon. The picture looks heavenly (not that anything I bake or cook ever looks like it does in the picture!)
I totally forgot to mention this: Mark was playing his new Depeche Mode cd in the car on the way to the party. He says to me, listen to this track, it reminds me of Jamie. It's called precious. I listened and could have cried (except me macara wasn't waterproof!)
Precious and fragile things
Need special handling
My God what have we done to You?
We always try to share
The tenderest of care
Now look what we have put You through...
Things get damaged
Things get broken
I thought we'd manage
But words left unspoken
Left us so brittle
There was so little left to give
Angels with silver wings
Shouldn't know suffering
I wish I could take the pain for you
If God has a master plan
That only He understands
I hope it's your eyes He's seeing through
I pray you learn to trust
Have faith in both of us
And keep room in your hearts for two
Today is the 1 year anniversary of Jamie's diagnosis. I am coping better than I thought I would. There have been no tears yet today, although thinking back, I didn't cry when we were first told either. It was just a tremendous relief to finally know what was wrong with our boy. There have been lots of kisses and cuddles though, even more than a normal day........and this is a little guy who is no stranger to being smothered with love!! It's a beautiful sunny day here, if it is a little on the chilly side. The boys have been playing ouside, I have been hanging my washing out.
I am sure that there will be tears today, but probably later on, once the boys are in bed and I have time to reflect. I don't want them to see their mama all sad and upset. Not when we have such a good reason to be happy and celebrate.
********Warning, this post is bound to be full of angry ranting and swearing and will most likely offend********
Today has been a bloody awful day. It started out ok. Connor is still off school with conjunctivitis, but is fine in himself, just has the damn pink eye. So we decided to take the kids to an indoor soft play area. While we were there, my mobile phone rings. It's one of the girls from a heart message board I use. I should have known that she wouldn't have called my mobile number unless there was something wrong. She called to tell me that Heaven has a new, beautiful angel today. To say I am devestated is an understatment. Mollie fought so damn hard. She had her stage 3 op, the fontan on the 14th March. It took her a week to stabilise after the op, but she was still so sick. Her kidneys weren't working properly and at one point, there was talk of brain damage. But she fought and fought and was well enough to come off the ventilator on the 27th March. Kate, her mother was able to cuddle Mollie for the 1st time in nearly 2 weeks. 2 days ago Mollie started to struggle again. Today, at 10.40am, Mollie lost her fight and went to join the angels playground. She was just 3 years old. For f*ck's sake, how is this fair??? I am soooo sad, but SO ANGRY. It is amazing how stonglly I feel about a child who is not mine and and that i have never met. These message boards are a weird and wonderful thing. I feel like Heartline is my home, like all the members there are family. We are all different, and yet have something in common, our beautiful children and grandchildren.
I have been a member of that board for almost a year now. The first time the board suffered a loss, I was sad and upset, but it seems that each loss is getting harder to bear. It is hard to tell if it is because I am now finally starting to understand the comlexities of CHD or because I have been on the boards longer and have got to know these wonderful parents and their precious children.
I have always considered myself an atheist, but after Jamies, diagnosis and surgery, I figured that there had to be a god....I had just witnessed a miracle. But if there is a god, how can he be sooo damn cruel???? I know that "that's life"....but is THAT supposed to make me feel better??? Is it supposed to make bereaved parents fell better?? This is the 2nd heart child in just 2 weeks that we have lost. Like is just not fair. Why take a child when there are scum of ther earth, murderers, rapists etc that don't deserve to live??? I guess I was right in the 1st place, there can't be a god. (sorry, don't mean to offend anyone, just my view)
Right now, I feel the urge to go upstairs and stare at my beautiful sleeping children for a while and be so very thankful that I have one more day with them.
Mollie sweetheart, I know that you are looking down on us from your cloud. I hope that you have made lots of other angel friends, I am sure you have. I know that you look just gorgeous with your angel wings, I only wish that you didn't have to go so soon. If you go and see your mummy tonight, pass on my love to her. I will miss you darling. Sleep tight beautiful angel.
Where does the time go??? I can't believe that this time last year, Jamie and I were sleeping peacefully, while waiting for him to have his life saving surgery the next day. It seems surreal now, like it was't my life.
I have been doing well up until this evening when one of the girls from heartline (the one who introduced me to the board) asked if it was Jamie's Happy Heart day tomorrow and that she couldn't believe that it had been that long. I remember vividly, texting her to say that he had gone to theatre. I am sure that I will have a mini meltdown tomorrow, but I will hopefully update about what we decided to do with our day.
Mark & I have been arguing alot lately. We are in a real bind money wise. Last year, we jointly decided that I should stay at home until Jamie started full time school. He was just about making enough for us to break even. Then came bad news, they changed the entire pay structure at his place of work and is earing about 10k less than what he was, making our joint income down 15k a year. We are really struggling. Mark has even mentioned me going back to work, but we have no one to look after Jamie. Our family are too nervous of all his "problems" and I couldn't even begin to imagine how difficult it woul be to place a child in a nursery that has so many food allergies, plus we would not be any better off financially after I paid travelling and day care expenses.
I was hoping to go somewhere really nice tomorrow, it seems appropriate that I should want to celebrate my son's life, but now we can't afford to go anywhere. I know that I shouldn't complain and just be happy that we are all together, especially as Jamie isn't old enough to remember even if we did do something really great tomorrow.
I wish I could win the lottery.....*sigh*
It really has been a bit of an emotional rollercoaster week. Some tears, much laughter and as many cuddles and kisses as I could get from my precious boy. I even felt guilt and sorrow for the little angels that lose their lives to CHD (another 2 from a board I use in the last 3 weeks )
The weather really did scupper any plans that we had made, but I made a cake, threw some decorations together and invited the grandparents around. Everyone enjoyed seeing Jamie and the boys had fun being the centre of attention. Perhaps we will get out day out over the weekend or on Mark's next day off.
I am still feeling quite emotional. I also can't believe exactly how much Jamie has grown in a year. He's gained almost 8lbs and grown 5.5 inches!! He is doing great, and even better now on his new fangled diet, lol! He has gained 1 1/2 of those lbs in the last month!
The only thing that puts a dampener on all the good news is Jamie's breathing. It is getting much worse. He makes the most horrible noise on his in breath, like he is trying to breath past a lump in his throat. I have noticed on the odd occassion that he is pulling his ribs in a little. If he does it again for any prolonged period of time, I will be straight down to A&E. Unfortunately the dr's are not open here today, being a bank holiday, but I will take him tomorrow. I have been looking up his symptoms and it seems that he could have laryngiomalacia, tracheo or broncomalacia or some sort of damage to the glottis due to intubation. It is quite a worry. Also, we think that Jamie had a sleep apnea last night. I was talking to hubby when I could hear one of the children from upstairs. I went to investigate to find that it's Jamie, he sounds like he's choking or being sick......coughing and spluttering. I go into him, he's panting like he's run a marathon and his heart is nearly thudding out of his chest and he is a bit upset, but half asleep at the same time. It was quite scary to see him like that. He has had the odd apnea before, but always while sleeping in his car seat or pushchair. He will go to sleep and the 10 t 20 minutes in, he will suddenly start chocking after a samll period where he stops breathing. Poor little guy, I would just like him to catch a break.
OMG!!! When will Jamie be able to catch a break?? I feel quite bad for moaning as many children are much worse off than Jamie, but still.....it is never ending! Jaundice, UTI's, FTT, eczema, heart problems, food allergies and now............laryngomalacia!!! I have just got back from the dr's and that is the initial disgnosis. It's a congenital abnormality of the larynx. This is what is causing Jamie's noisy breathing/stridor. It does appear that he should have outgrown it by now, but the dr thinks that because of his problems and that he is still smallish, this could be why. I have no idea. Mark wants him seen by and ENT, but the dr didn't appear worried, but did say that this is causing his apnea's and the hyperextension of his neck when he sleeps.
Oh, and to top it all off, she told me to EXPECT Jamie to develop asthma over the next few years
Well, it's done. I have made an appt for Jamie to see an ENT, a week from tomorrow. I have joined a group of other parents that have either laryngo/tracheo/broncho malacia. It is a bit slow, but they have responded to my intitial message and it seems that LM can be caused by surgery or intubation and it can present in older children. Now I just need to find out of he has the same chances of growing out of it!
Jamie's appt is tomorrow afternoon. I really am not sure what I am expecting from it. It would be great if they could do a quick scope on him to give us a definate diagnosis, but as he needs antibiotic cover, I doubt it will be done tomrrow.
It has been one of those really weird weeks, where all the days seem to merge into one. Jamie started with a funny rash on Friday, and as it usually the way, I didn't notice until after dr hours! After speaking with NHS direct, they said they would feel better if I took him to the emergency dr to rule out menengitis....which I was 98% certain it wasn't. The dr said not to worry and sent us home. Over the weekend, Jamie was pale & more tired than normal, but still running around, playing, eating etc. We had to see one of our own dr's on Monday for a referal letter, so I asked her to look at Jamie's rash, which is spreading slowly. She was pretty stumped, said it was petechiae (small area's of bleeding under the skin). I loked it up, it can be caused by any number of things, allergies to meds, auto-immune disorders, blood disorders like ITP, leukemia and nutritional defeciencies. I know that it is likely to be the later thanks to Jamie's diet and fussiness, but I did check him all over for unexplained bruises!!
Then today, Jamie was being especially high maintenance this morning, more clingy and a bit whiney. I wasn't sure what was up, but figured he was sickening for something. After lunch, it became obvious what the matter was, when he did a disgustingly fowl nappy. It was exactly what his nappies were like before we took him off the wheat. He has been accidentally "poisoned". It is the only way I can discribe what it must be like for Jamie to eat wheat. He must have had bad tummy ache all morning to produce a mucous filled nappy that smells like the back of the garbage truck :puke: It is really very frustrating as this is the 4th time in 2 weeks that Jamie has had allergic reactions. He was also "wheated" 2 weeks ago with the same diastorous nappy result. Last week he has a reaction to eggs. Mark had made omlettes for the res of the family and must have got some egg white on his hands. Even thought it was a good 30 minutes later that Mark touched Jamie, poor kid erupted in hives. Then, just 2 days ago, I had a bowl of cereal for breakfast and 10 minutes later kissed Jamie. He reacted to the traces of milk on my lips. I am starting to wonder if we have become too lax in the 7 weeks we have been following Jamie's new diet. We can't keep accidentally "poisoning" him like this.
Connor is doing just grand! He went backl to school on Monday after his 2 weeks off. He was glad to go back and I was glad he was back. I am not looking forward to the 6 weeks hols. He is very difficult to keep amused and his attention span is awful. He never keeps at a task for longer than 10 minutes. Even Jamie can occupy himself for longer than 10 minutes. He brought a letter home from school today, saying that the nurse will be in doing thier 5 year well child check next month. They sent a questionnaire asking if he has any medical problems, takes any meds, has any conditions of we had any worries. Obviously we aren't overly concerned about Connor, but my friend I am were having a laugh over how I would be able to write a book when it came time to do the same thing for Jamie. Maybe I will just package up his entire medical file, save me writing or typig it all out, pmsl!
Right, better go, it nearly bedtime......thankgoodness! It has been a looooong day! More tomorrow.
Appt went well! The consultant was 99.9% certain that it is not laryngomalcia as his voice is fine and the noise that Jamie makes is different, more of a stertor than a stridor. He looked at Jamie's ears, up his nose and in his mouth at his throat. Jamie's nasal passaged appear normal, but his tongue is a little bit large for his mouth and his upper throat (pharynx) is a little narrow. He attributes this to Jamie being on the small side for his age and thinks that he will grow out of his "darth vader" breathing in time, but it could take a while. He said the onyl way to see for sure what was going on was to put him under, and I DON NOT want Jamie put to sleep without a very good reason and we both agreed that it was not bad enough to warrent investigation at this time.
The only bit of bad news that we had at this appt was when I asked why his breathing has got worse recently. He told us that Jamie is just approaching the age where thier tonsils, but particularly thier adenoids grow faster than the rest of them and can cause an already narrow pipe to become narrower. If we notice him recessing or he goes blue, we are to go back and seek help (where he will probably need his tonsils & adenoids out)
Right, better go, I am supposed to be tidying up now that the kids are in bed!
It's been a while since last wrote, but things are settled and there isn't much new to write about.
My 1st born baby is going to be 5 next week! I can hardly believe it, lol! He really has developed a big boy attitude recently though, which is oh so annoying! He really gives it some lip these days :roll:
We decided that we are going to take Connor to Drayton Manor (theme park) for his birthday. His birthday is actually a friday.....and then Mark doesn't have a day off until Friday 2nd June. We have now decided to go to Drayton Manor with Birmingham Children's hospital...for 2 reasons. First of all, the entrance price is at a reduced rate, but also because 50% of the reduced entrance fee goes back to the hospital!
As for Jamie, he has been doing quite well. His weight is going steadily up, following his line, just above the 9th centile. His new diet obviously suits him. Unfortunately, I can't say the same about his height right now. He has stalled at 79cm....which is what he was at 18 months and he has dropped down the charts again. The HV tried to play it down and said that she will check him again when she does his 2 year assessment.
I had to take Jamie to the dr today.....it looks very much like he may have chickenpox. The dr said it was too early to tell, but the spots on his tummy had started to develop a raised head and he said he would put money on it that he has chickenpox. I can't get over how badly he has timed it. His cardiology appt is in just over 2 weeks and Connor hasn't had the pox either. It will be just my luck for JAmie to give Connor an early birthday present, lol!
I am getting excited about a trip that we are taking to London in July. We are attending Heartline's summer party this year and have decided that it would be foolish not to go to legoland while we are so close by. We are now having a 3 day break in London, spending 2 days at legoland first and then attending the party on Saturday and driving home to same day! It will be so nice to treat the kids and then meet lots of other children like Jamie!
Oh, and I had an idea for Father's day. My dad has never met Jamie. They are in the US and we are in the UK. I have been working on a montage of Jamie, and figured that Dad may like it. I also need to do one of Connor, but I am waiting for his birthday pics. I also have done one of my family, which is in my siggy:
I have totally fallen in love with the 1st song. I am not really a Celine Dion fan, but this song really is beautiful
You're my life's one miracle
Everything I've done that's good
And you break my heart with tenderness,
And I confess it's true
I never knew a love like this 'til you....
You're the reason I was born
Now I finally know for sure
And I'm overwhelmed with happiness
So blessed to hold you close
The one that I love most
With all the future has so much for you in store
Who could ever love you more?
The nearest thing to heaven,
You're my angel from above
Only God creates such perfect love
When you smile at me, I cry
And to save your life I'd die
With a romance that is pure heart,
You are my dearest part
Whatever it requires,
I live for your desires
Forget my own, your needs will come before
Who could ever love you more?
Well there is nothing you could ever do,
To make me stop, loving you
And every breath I take,
Is always for your sake
You sleep inside my dreams and know for sure
Who could ever love you more?
Jamie saw an allergist dietician today and I have to say that I am not exactly sure how the appt went, lol! We discussed what Jamie's diet is like, the kinds of things he eats, what he drinks etc. Her concern is that he may not be getting enough calcium, so wants us to start a nutritional diary soon and we will have to send in all the labels of all the things he eats and she will work out how much calcium he is getting. He may need calcium suppliments.
We then discussed the chances of getting some help with getting his food on prescription. I was basically told that there was no chance, not because she doesn't want to help, but because there is nothing for him to have. The food normally on prescription are stuff like formula's for milk or milk protein/lactose intolerant children and gluten free stuff for coeliac's. Although Jamie is following a gluten free diet, it's because we are avoiding wheat, where as coeliac's only need avoid gluten and their products on prescription contain wheat that has been "cleansed" of the gluten aspect of it. Oh well, how was I to know until I asked? lol!
Then we talked over each allergy in turn. She confirmed what I thought, his RAST came back highly positive to milk & eggs and only a very weak positive to wheat and she was surprised we saw such a vast improvement in him when taken off the wheat. She said it goes to show that the RAST in under 2's isn't 100% accurate, although a positive is a positive, but a negative could still be a positive.....or something like that :? She then asked if I had ever given Jamie a nut and laughed at my horrifed expression. I didn't give Connor any nuts until he was over 3, lol! She told me the whole list of nuts that Jamie was allergic to......my jaw hit the floor I think. He's allergic to peanut, almond, brazil nut, hazlenut, pecan & coconut (I'm sure I am missing something) but not allergic to pistachio, walnut and something else I can't remember. His nut allergies scored on the same scale as his egg allergy....highly allergic. There was talk of doing a nut challenge sooner rather than later, maybe 6 months or so to see what kind of reaction we are looking at and keeping everything crossed it's not anaphalaxis.
Basically, we are to continue what we are doing, but to try and cut down on his accidental reactions.....very difficult when we have an older son who's a messy eater and Jamie reacts to tiny traces of things on our hands (or in my case on my lips! I kissed Jamie on the forehead yesterday after eating an omlette and he came out in hives )
All in all, a good appt, nothing new was discovered!! That is a big bonus to me!!
Now I just have to get Jamie's cardiology appt out of the way. I feel sick at the mere thought of it. I am totally disorganised this time around. I would normally have a list of questions as long as my arm by now, but they either don't give you the answers, give you answers you don't want, or answer crypitcally, so why bother. All I want is a nice, borning, routine appt, where they don't find anything new. Is that too much to ask?
We are having realy problems with connor now. HEhas regress so badly with his toilet training. He is back to wetting himself at least once a day, twice on most days. I am at the end of my tether. What the heck would I do if my washing machine broke down? I am going to see if I can get an appt with the dr's tomorrow, or maybe even today. I doubt that they will be able to do anything, but will probably ask for a urine sample and refer him to a paed.
Apart from that, life is ticking along. We got a new family member last week, a netherland dwarf buck called Cookie! He's just the prettiest little thing, lol! We got it for the whole family, but specifically for Connor in the hopes that a bit of responsibility may help him out. We are now picking up a 3rd old lionhead doe tomorrow evening. Neither have been altered yet (spayed/neutered) so I will be keeping them very much seperate!
Here's a few pics of cookie!
First of all I have to get this of my chest....
COME ON ENGLAND!!!! WOOOOOOHOOOOOOOO!!!!!! We have just won our second world cup match and are through to the last 16!!! I am THRILLED!
Ok, now that I have got that off my chest, can i just say, I normally don't like football, but always make an effort for the world cup. It's the only time people in the UK get on with each other.
Well, as per usual it's been a while. It was my birthday on Tuesday. we are pretty poor, so I didn't get much, but did get a willow tree figurine I wanted. I have to remember that we are going away for 3 days next month to London, so that Jamie & I can attend a childrens heart charity summer party, and meet the people who have been supporting me, and I have been supporting in turn for the last 14 months.
The kids are ok. Connor is still having problems, but his urine sample came back normal, so I guess it could be all in his head. Although i did manage to get it out of him at school that he is having some problems with 2 boys in his class that keep picking on him. I mentioned it to his teacher today and will keep closer tags on Connor.
Jamie had another dietitian appt today, basically this will be the last time we see Elaine. I am kind of sad about it as she was a great support and really helpful, but it was decided that all of Jamie's care should be in one place. So we are transfering care back to Alison Kendrew, seems a bit odd after we were discharged from her care about 15 months ago.
Now I am about to drown in the sea of despare known as the dreaded DLA forms (a governement paid benefit, paid to children who need significantly more care that the average child of a similar age). After speaking to a wonderful lady at the Children's Heart Federation, she is convinced that Jamie will get at least middle rate of DLA. The good thing is that she used to work for the DLA unit, so knows exactly how to word the claims to get the best impact, so I am working very closely with her. It is looking very much like the forms will take 2 or 3 weeks to fill in to complettion, including getting supporting statements from all of Jamie's specialists and dr's.
Right, better get a move on, the rabbits hutches won't clean themselves.
Today, my miracle baby is 2. I am totally in denial, but also feeling pretty hurt that no-one remembered. I know that in the grand scheme of things, I am being pathetic, but this is MY baby, the baby who had to fight so very hard just to be here. I KNOW that we would have been mourning this day if I had not pushed and pushed to get Jamie the help he so desperately needed.
Right, now that that is off my chest, I can update properly. Jamie had a pretty good day, apart from being "wheated" at lunch time (after specifically asking for no gravy on Jamie's roast dinner, they failed to inform us that the meat sits in gravy until served and they had tried to scrape it off ) He had a little bit of tummy ach that woke him from his nap, but the family arrived and Jamie started feeling better. The family all doted on Jamie and he sooooooo loves being the centre of attention! His cake, although from a packet, was a success. Now we just have to get through a toddler party tomorrow and I can stop pretending to be mrs Mop!
Here are some pics from today:
My poor baby is not well. I'm not sure what is wrong with him, but he has been having on/off fevers since midnight last night (nearly 3pm now), been off his food and more whiny than normal for the last 3 or 4 days. On the whole, Jamie is now a pretty healthy child, so to see him feeling bad is breaking my heart.
I took him to the dr and we are still none the wiser as to what's up with JJ. His ears/throat/chest are all fine, although the dr did start worrying about Jamie's purpuric (non blanching) rash. I had to explain that Jamie has had this on and off for 3 months and that it was NOT meningitis. We have to get a urine sample off Jamie in the morning to rule out a UTI with his history of having them. Apart from that, my friend has just called and told me chickenpox is going around. The last time we thought J had the chickenpox, it was a false alarm :roll:
I am a bit annoyed though. It clearly states in his notes, on instruction from his paed, that he needs to have antibiotic cover for unexplained fevers. But as the dr asked for a second opinion about the rash from another dr, we didn't get any anti-b's. (the 2nd dr believes in homepathy, which in the right circumstances has it's place, but not for my son!). Grrr.
Jamie had his 2 year assessment today. Well, I have to admit that I am quite depressed by the whole thing:
The good news:
He has grown!!! At long last, although the HV admitted that his last height check probably wasn't accurate (79cm 6 weeks ago) He is now 83.2cm (32 3/4 inches) tall!! He may finally be ready to outgrow some of his clothes. I am so fed up of seeing him in the same clothes, he has been wearing some of them for 12 months now. He is between the 9th & 25th centile for height and has been following this, excluding his last inaccurate reading)
She is also impressed at his motor skills, gross & fine. He managed to build a tower of 7 blocks and they only look for between 3-5 at 2 years old.
The bad news:
Where shall I start?
He has lost more than 1lb in 2 weeks He was 24lb 10 oz on 14th June, now he is 23lb 8oz. He was following just about the 9th centile and is now between the 2nd & 9th.
It gets worse:
She is quite concerned about Jamie's eating habits. We discussed that it sounds very much like he has some form of sensory issues, but that he may grow out of them. We are going to keep an eye on it for now. She also wants me to get back in touch with our dietician and either discuss over the phone Jamie's eating habits/problems and perhaps get an appt to see her. He basically has a very repetitive menu (like most kids I guess) but he has started to refuse things he would previously eat. He eats no vegetable at all now that he has stopped eating potatoe, bananas or raisins for fruit, chips, cookies or chocolate and meat. That's about it. He doesn't do wet with certain textures and isn't keen on "wet" food or food that feels slimey, although he eats spaghetti and porridge??
She wants Jamie refered to a speech therapist. Her exact words were "he's got immature speech" He has alot of words, but they are quite babyish. I thought he was doing brilliantly considering he didn't talk at all until he was 18 months. Thankfully, we don't have to wait for the referal, as speech therapist comes out to all 2 yr olds anyway, and has just called and brought his appt forward to tuesday. I just hope and pray that she doesn't agree with the Health Visitor, I am not sure I could cope with anything else right now. I do understand that they want to catch speech problems early to try and correct it before school.
All in all, I feel like I have been kicked in the guts.
I though that I was doing well with him and feel like this is a personal failure :cry:
Oh and to top off my day, Jamie looks like he has the pox (has yet to be confirmed by dr's and I have to take one of my rabbits to the vet as she can't put any weight on her back leg, one of her toes it sticking out at a funny angle. Poor baby!)
I am feeling my better about Jamie's assessment! It would not be my life if it did not have some kind of drama in it, lol! I think that Jamie is doing brilliant and that is all that matters.
As for me, I have never felt more lonely in my life. Mark & I are like strangers. We have nothing in common any more apart from the kids. I am so wrapped up in them, epecially Jamie that I have no room laft for Mark, but to be honest, he helped make things that way. He doesn't really seem to care about us, he forgets things that i tell him all the time. He didn't even know about Jamie's appt on Thursday, because I didn't tell him. What was the point, he wouldn have come and he would have forgotten all about it anyway. The only appt's that Mark comes to are Jamie's cardiology ones. I am not evern going to tell him about the next one (11th Dec) and go on my own. I am pretty certain that things will be fine with Jamie and Mark may as well be a t work, earning his peanuts.
I don't know how my life ended up like this, it is a total mess. Mark & I are always at each others throats. I am quite certain that our marriage is not going to last much longer And do you kow what we are falling out over?? Have a guess! Money! That's right, money is the root of all evil. It was agreed that I would become a SAHM while Jamie was in PICU as that was what Jamie really needed. So things becaem tight but we were just about managing. Then Mark's job took a turn for the worse, with them cutting almost all commissions and bonus' out of their wages. Mark's basic pay is abismal and we could only keep going with his commissions. Now we are rapidly sinking into debt we can't get out of. What infuriates me even more is that Connor really needs some new school uniform, as his trousers & tops are too short, but the money went on Mark, he went to go and see Embrace in concert. I NEVER go anywhere and can't remember the last time I spent money on myself. Mark goes out normally once a week, although these last couple of months it has average out at maybe every 2 weeks. He probably spend £10 when he goes out. That is more than I spend on myself, including sanitary wear every 2 months. I am so fed up of being in this situation. He even told me to go back to work, when he knows that finding a childminder or nursery that would cater for Jamie special needs would be impossible and cost more than my wages, making us worse off.
Then there is the fact that he is ALWAYS having a go at me about the state of the house. I admit, that I am not a neat freak, and a bit of mess doesn't bother me, I would rather spend my time with Jamie & Connor when he's home from school. Then he moans that his dinner isn't ready when he gets home from work. Maybe if he came home at the same time everyday, I would know when to expect him, plus, if he is working late, it clashes with when I put the boys to bed. The few times recently I have made dinner (for the whole family) he has been really late home with not even a phone call to say where he is or why. Maybe he is having an affair, I don't think I care right now. All I know is that I can't so much as look at him right now, never mind perform my wifely duties.
He also complains that I spend alot of time on the computer, which I do when they boys are in bed (except for now, as I am so mad I need to do this). HE goes into the garage to work on his "music" and I sit at my computer in the kitchen and chat to other mums of special needs kids, people who I feel I can relate to and who can relate to me. I sure as hell can't relate to my husband.
I guess that I am stuck with him though as we can;t afford a divorce. Maybe we should try councilling, but I don't feel like I wan to sit with him for any length of time, especially in a confined space with a stranger trying to dissect us.
Right better go and do all the housework before he gets back fro his parents.
Flipping heck! I am not good at this journal thing, although perhaps it's becuase I have a functional blog where I can rant and rave away to my heart content and it is much easier to post pics and the like.
Anyway, we are doing ok. The boys are fine, although will have to wait and see what their appts over the next feww weeks bring. The first one in on Monday, Jamie's appt to see his paed. There was talk of his being discharged when we saw him in feb, but that was before we knew about the allergies.
Mark & I are ok too. He is looking for a new job and I am looking at ways to be even more frugal than we are. We are currently into getting free things from the supermarket. If they have the wrong price on the shelf and overcharge you, they give you your money back and let you keep the item. In the last 2 weeks we have had free cheese, free lamb, free chicken fillets, free ground beef and a free beef roasting jont! Our freezer is full!
Anyway, not much going on apart from that, but I didn't want to just leave my journal.
I can't believe it has been 3 years already. In some ways it feel like a lifetime ago and other days, like yesterday. I know that I will never know the pain the some of the other Angel mother's are going through, like Kate, Debbie, Jude, Emma, Joanne, Carrie, Sheryl and the list goes on and on and on...unfortunately. Having said that, it doesn't mean that I don't fee the pain of having lost a baby, it is just slightly different, not having got to meet my baby or even feel him/her move. The same way that it doesn't mean that I didn't love my baby. The excitement that you feel at learning that you are pregnant, the planning that you do, the imaging of the future, I lost it all. For the longest time I wondered if I was being punished for something. I know know, my little Boo, that you most likely would not have survived outside your warm, cosy home. You are my sweet little Angel, in your playground way up high. I know that you are watching over us, espceially your little Brother Jamie. I love you all the more for it.
I will be lighting a candle for you tonight as I do every year, I will get your memory box out and cuddle the toy dog we got you and place your kiss on his nose.
Here is a poem I found for you:
I'll Never Know
How did I say goodbye ... when I didn't get to say hello?
I wanted so bad to keep you ... how did I let you go?
I had so many dreams, so much love I wanted to share
There's nothing I could do ...why is life unfair?
You're my perfect angel...I dreamed you long ago
I never got to hold you, it broke my heart to let you go
The pain and confusion I felt insideI can not explain...I can not describe
God will rock you in your cradle and watch you as you sleep
I will love you in my heart ... it's all I get to keep
You are blessed my child ... you're in heaven up above
You'll never be alone...you have Mummy & Daddy's love
Hush my little baby...you need not ever cry
You were always wanted! I wish you had not died
You'll be my sunshine in the daylight and the brightest star at night
Reach for God's hand and go to the light
I was blessed to have you briefly... though I had to let you go
I wish I knew the reason but I guess I'll never know
I love and miss you Boo, mummy xxx
Ah, found my journal, lol! Not quite on page 2 though! Now that i have an online blog, I keep forgetting to update this journal. I should imagine not that many people read it now, it's not like I have an interesting life or anything.
If anything, my life is dictated by routine. I am nowjust getting used to Jamie new meds routine. I even had to make a spreadsheet so that i could tick off each med as it is given as I am such a scatter brain. Jamie now taken 3 meds 3 times a day and not one is directly related to his heart condition :roll: I am hoping that Jamie's downward spiral in health is related to side effects of his meds, but in all honesty, he hasn't really been himself for about a month and has only been on the calicum 10 days.
It's Connor's turn for the hosoital today, although i am fully expecting him to be discharged as he is absolutely fine! We are able to keep control of his constipation /diarrhoea issues with diet alone, which is great as I don't need any more meds on the chart!
I am still waiting for the clinic letter to arrive from Jamie's paed check-up on the 7th. I would really like that before I call the cardiac liason nurse at the children's with my concerns.
Right, it's lunch time, so had better feed the boys....not that jamie is eating much these days, so i mean that I had better easte some food by making it up and then throwing it away with maybe a corner nibbled of the bread!