I’ve been a bit concerned for quite some time that something may happen this website and Louise’s story would be lost considering that nobody else seems to blog with this host. I do have a soft spot for blog.com and for this template (I’ve never changed it since day 1) as so many emotions and highs and lows run through it’s pages but it really would be terrible if it closed down, I’d never be able to write this story again with the same ‘rawness’ if you like because you know of course writing as you’re going along is much more authentic than writing about the past.
So I’ve painstakingly transferred the entire blog, posts, comments and links onto Blogger, which also has a few more sophisticated features. I tried the export blog function but Blogger didn’t recognise us so I’ve had to do it all manually. I was gald when the last bit was copied/pasted, but it was also revealing to read back over some of the posts I’d forgotten about…a few more tears were shed in retrospect but also the joy of now reading knowing that Louise has surpassed our highest hopes and now continues to light up the world with her kind and self-assured naughtiness, though she’s never bold, just loves spilling things.
This site will still be here but any new updates will be on the new domain.
I have also been blogging about other ‘stuff’ on my not so new blog Raindrops On My Head
(I’m not that happy about the url being my name, it looks a bit narcissistic, but when I was choosing one everything I suggested came up as already taken so it ended up as just my name.)
so if you have enjoyed the journey here you may like to join me over there. It’s not a Mommy Blog about Louise or a diary about me or my family, though they feature from time to time simply because they essentially take up most of my attention, but rather I want it to be a positive look at things which I have learned along the way and anything which I think you might benefit from or be inspired by. Have a look and if you like it maybe subscribe or ‘like’ my Facebook page.
Thank you all for sharing this amazing time with me and know that one thing I really learned from you all is the true goodness of people and how so many are willing to suffer along with you…it meant a lot.
See you over at Blogger,
Here’s an interesting video I came across on YouTube. It hits home that it’s not necessarily going to be all plain sailing for the future. Thank God for doctors and scientists like these guys and a little reminder to pray for (and fund) them.
Planning Lifelong Care For The Patient With Single Ventricle Heart Defect
I love what he calls people like Louise who have single ventricle circulation:
“These very special human beings…who have…really never walked the face of the earth before…”
I agree with him-very, very special.
In the meantime, we’re still waiting for a date for Louise’s MRA.
Today we had Louise’s regular cardiac check-up. John came along with me because I wanted him to be there as we needed to try and pin down a definite plan for having Louise’s brain MRA done which would include the heart MRI.
The doctor was very pleased with Louise’s colour and demeanour and said she was looking super! We got her ready for her ECHO and much to Louise’s chagrin he put a big dollop of the gel onto her chest-gone are the days when she used to gurgle up at him with all the charm she could muster. Well he is pleased with how things are looking. There’s a little bit of backflow ( into some vessel, I’ll check with John later) but he’s not too worried about that, she might grow out of it. He showed us her fabulous left ventricle and then her tiny little right ventricle, barely there now. He ased about breathlessness and what makes her blue (really only swimming and cold) and said that was expected, as after all…and the first time I ever heard him using this phrase…she only has half a heart.
And then he shot an arrow through MY heart…”Well, we’ll plan her surgery for Summer next year” (!!!!!!!!)What!!! Sorry, my plan was that that was her finished with surgery!!!
Well, it seems not, it’s my own fault as he told me not to build up my hopes and of course I did.
Anyway, we then discussed her heart MRI and brain MRA and he said he’d do the heart when she’s 15 kilos (she’s 11 kg now) which will probably be around next Christmas. He said she’ll always be slow to gain weight, she’s a lean baby. Then schedule her surgery, providing she meets criteria..adequate pulmonary artery growth, lung capacity etc. What about her MRA..well he said go ahead and organise it separately as he will want a neck line put in under general anaesthetic to measure pressure and it wouldn’t be a good idea to be doing any other procedures at the same time. That suits us fine as now John can full steam ahead to organise that.
So now instead of one more day under oral sedation, we are now looking at two procedures under general anaesthetic and major surgery next year.
I am gutted.
That said, John is happy about it as his preference is that Louise will have the gold standard circulation that is best for her, and it would be terrible if they postponed it only for her to have it done when she was a teenager or older with all the psychological factors that would kick in by then.
I know he’s right but I am just dreading living through all that again, I had put it behind me (sort of).
God will equip us I know.
So it’s looking like this blog will be waking up from it’s dormant state.
Click on the little link below for the medical explanation of her operation.
Keep praying for us,
Jennifer (& Louise) xx
This is a quick little post to announce my new blog. Even though this blog cost me many many tears, I really enjoyed writing it . I considered gradually introducing other topics apart from Louise, as you can see from the last post, but it really is a single issue blog and it deserves to be kept that way. I will continue to chronicle my beautiful Louise’s progress here. For example I still have to tell you about her successful hand operation and her upcoming MRA.
My new blog is called ‘Raindrops On My Head’ after the song I used to sing as a little girl and which caused me much distress as I had no idea how to end it and so was stuck on repeat each time until one of my parents would come to my rescue. Well hopefully I won’t be repeating myself too much but I hope people enjoy it and maybe subscribe to it. Like my original aspiration for this blog, which is so close to my heart, I really hope my readers will benefit from what I have to say.
The link is in the blogroll at the side, but here it is as well
When I was a little girl most people didn’t have telephones in their house and we certainly didn’t. So there were telephone boxes dotted in convenient locations and that’s where people went to ring their relatives, friends and the odd sneaky call to a boyfriend armed with a handful of coins. The box near my house was where you’d go and sit on the wall to wait for whoever was in there to either finish talking or run out of money and hope the person was calling long distance as a local call had no time limit. My mother used to telephone her sisters in Scotland and Northern Ireland from there and the calls were quite expensive (and the telephone box freezing in Winter). Co-coincidentally, that wall beside the telephone box is where John and I spent many many hours sitting chatting when we were dating as it was half way between our two houses and is where the foundations of our marriage were dug. The box is gone now but there are many memories a lot of people hold in which it features…good news, bad news, giggling teenage chatter and old friends passing time together…a lot of memories.
(This isn't the actual box)
Well anyway, long distance telephone calls were expensive and inconvenient and Ireland being Ireland a lot of people had to save up for calls to sons and daughters or other relatives in UK, America or Australia so conversations were the occasional treat and people would generally make notes to keep the conversation on track and not waste a moment on idle chatter.
Every now and again the charging mechanism on the telephone became faulty and wasn’t able to detect whether the correct money or indeed any money at all had been inserted and so calls could be made free of charge. (technically this wasn’t stealing as a telephone engineer once told me that the process of telephone calls doesn’t actually cost anyone anything so what you’re paying for is the service and the maintenance of the lines which is fair enough) Anyway, when this happened it would usually take a day or two for the P&T to realise the fault and would quickly fix it. It was almost always the children who would make this great discovery and would quickly and enthusiastically spread the word and so parents were able to have long relaxed conversations with their absent children, little boys rang NASA and little girls rang Disney, Florida. It was great and everybody benefited thanks to the children who discovered this treasure and didn’t keep it to themselves.
I use this story a lot to illustrate why people who discover something really great and know it will benefit someone else commit an injustice to keep it to themselves, especially when YOU know it because somebody else has told YOU.
And this is why if you know me a wet weekend you will know that I believe in God. And it is why I am quite happy to pass on what I know because I remember that broken telephone box. Belief means to hold AS TRUE. If something is true, you should pass it on.
So what I’m trying to say is I believe in God and I think He LIKES us.
Imagine a loving parent who delights in their child. That Mummy or Daddy gets real pleasure in seeing their child happy and secure and loved. A few days ago I saw a post online offering free printable little notes for leaving in a child’s lunchbox in this back to school week. I thought that was a lovely idea though I’m not sure if my older children would appreciate it unless I tucked them somewhere where their friends definitely wouldn’t see them
Any parent who loves their child will sometimes leave a little surprise of something beautiful for no other reason than to show how much that child means to you or to remind him or her that you’re thinking of them.
There are numerous children’s books with the theme of the parent and child relating to each other the immeasurable extent of their love for each other, each trying to outdo the other in their ‘I love you this much and that much…’
Quite often the story leads to I love you as much as the Moon and the Stars…
But lets have a look at what the moon and the stars actually are…the moon as far as astronomers know is a lump of rock and the stars are made out of recycled material which is burned as gas and in fact oftentimes by the time the beauty of the star reaches our eyes it is long burnt out and actually no longer exists. So I love you as much as the Moon and the Stars maybe doesn’t quite say it.
So our loving Father God delights in His children and like any loving Father He wants to leave a little surprise to illustrate how much we mean to Him and that He’s thinking of us. But what to leave? What to leave? Think, think…
Last week astronomers announced to the world that they have discovered a planet made out of DIAMOND!!
So this is what I think…God has just upped the stakes…To Him we are not just worth the Moon and the Stars…we are worth the Moon, the Stars and a Planet Made Of Diamond!! Now beat that!! (and maybe just maybe He broke the telephone box as a little treat for His children too? Just saying…)
When Louise was 10 days old she went into heart failure, that is, she started dying. By having been blessed to have been born into the First World, she was admitted immediately to hospital and operated on a few days later. If she had been born into the Developing World I would now be placing flowers on a small grave instead of making funny Facebook photo albums chronicling her misdemeanours. Instead of being admitted into a world class cardiac unit, she may have been brought to a facility bereft of supplies, personnel or facilities for her surgery and would have died of heart failure shortly afterwards. This world isn’t fair and probably never will be but each person can only do what they can do. I can’t become a billionaire benefactor to all these children, I can’t donate my medical expertise because I don’t have any, but I do have two legs and though I cannot at this moment run 10 kilometres, if I start now, I will be able to by next year.
There is an international organisation based in America International Children’s Heart Foundation (www.babyheart.org) who bring doctors, surgeons, equipment and everything else required on missions to developing countries and perform life-saving heart surgery on children who would otherwise die. In the process they also provide training for doctors in these countries to leave a legacy where less and less of these precious children will die and hopefully they will go on to leave a trail of mischief in their wake just like my beautiful Louise. All of the doctors do this completely free of charge, often during their only holiday.
I am going to do the mini-marathon for them next year and I really hope to raise as much money as is humanly possible. While fundraising I will hopefully be able to raise awareness of Dandy-Walker Malformation and PHACE Syndrome as I intend in using my very talkative personality to grab every opportunity to talk about it as I can.
So I’m warning my family and friends…start saving now. I will be looking for LARGE donations. Nobody ever knows what is around the next corner and everyone reading this well knows, if it’s illness, you are among the world’s privileged minority.
Yesterday afternoon we had Louise’s appointment in the National Centre For Medical Genetics which is based in Our Lady’s hospital, Crumlin (imagine,all these things that are going on in the country that you never know about, interesting.) I didn’t really know what to expect and just guessed it’d be a matter of taking our bloods and some talking. My guess was pretty accurate apart from the bloods. We met with the Professor of Genetics who had already seen Louise when she was in hospital immediately after she was born and another doctor.
He really just discussed what we already knew about PHACE Syndrome and said that they don’t know whether there will be any extra implications for Louise in the future as PHACE is very rare and was only named in 1996 so there have been no long term studies to date which is why they are very interested in following up every case like Louise.
He said that although PHACE seems to be genetic, so far there is no evidence that it’s hereditary so there’s no need for any of the other children, or indeed Louise, to worry when they are having children that this could happen again. There was no need to take any more bloods from her as they already have her DNA, genetic and chromosomal reads from her cord blood which was collected at birth. Incidentally he said all her results so far have been normal, which is good. As we know, finding a gene when you have no idea what you’re looking for is like trying to find someone in Tokyo when you don’t know what they look like, what their name is, where they live or where they work.
So they’ll hold onto the DNA and hopefully it will produce with some medically useful gems, maybe she might even get a gene named after her…’Beautiful Louise Gene’ sounds good. Wouldn’t it be nice if parents could be told their child has ‘Beautiful Louise Syndrome’, or ‘Very Very Special Caleb Syndrome’ or ‘Best Little Girl Gracie Syndrome’ instead of scary sounding things like ’5-ALA dehydratase-deficient porphyria’ or ‘B variant of the Hexosaminidase GM2 gangliosidosis’
Well I think so anyway.
As regards bringing forward Louise’s MRA, I don’t think it’s a runner. He said it’s not his decision to make but he doesn’t think they’ll do that. The reason for this is an MRI or MRA for a child is not like for you or me being told to stay still for the duration of the scan, it involves a general anesthetic which of course has risks involved, so they wouldn’t give a child one just to get information if they weren’t going to act on that information. He said that because Louise is well and not having any neurological problems so far there’s no way they’d start going in to surgically cauterise or drain any dilations for fear of actually disturbing her status quo, rather they’d just monitor her and her aspirin is protective anyway. They would only do surgery to relieve a problem and he has seen children with PHACE who are very neurologically unwell which doesn’t apply to Louise. I suppose it’s what I wanted to hear and it’s not what I wanted to hear. Anyway, they are the doctors, I’m not, and I know one thing for sure, EVERY single doctor she’s seen since she was born has her best interests at heart.
(actually now that I’m writing this, I’m thinking there’s ONE doctor who was involved in my pregnancy who I’m going to write to tonight to thank her for being such a comfort in the midst of so much darkness, she was a Fellow of Fetal Medicine and she used to take me aside at the end of the visits and say things like ‘it’s sooo exciting, she’s going to be a beautiful baby girl’ and ‘she’ll look just like the other children, they’ll LOVE her’ I wonder how many lives she has saved just by saying that sort of thing?)
So that was more or less the genetic visit, he just photographed her face marks and asked us then for permission to hold onto her DNA for research and would we mind if they called on us for students etc to study her case. I refused. Ah no, that’s a joke, of course I agreed (in fact I’d be a bit chuffed to tell the truth)
Well, one thing I’m learning as we go on…in some ways Louise was unlucky to have pulled the short straw, but in so many ways she is so very lucky in that she could have been so much worse.
Thank You, Thank You, Thank You God.
Louise Gardening In Scotland
I Love Ireland...Then Again, I Love Scotland Too..
Today I read a post on a Dandy-Walker forum by a sibling of a young man who lives with Dandy-Walker asking parents to consider abortion more seriously as the way to go after getting an in-utero diagnosis. She defended the position that practically all doctors push for termination as the preferable option.( I have yet to come across a DW family who were encouraged to welcome the baby by an obstetrician) Her reason for this request is that she wishes her mother had aborted her brother because then HER life would be better.
This shocking post set me thinking and I have been mulling over it all afternoon, so here are my thoughts, some of which I posted on the forum.
The day we heard about Louise’s problems we were broken hearted. The option was immediately presented to us that many people would ‘go to England’. Several times during my pregnancy I was asked by friends ‘did I have to have a termination?’ Our Obstetric visits were like a psychological warfare as to who was going to win out…Louise in this instance was lucky that there was NO chink in her parents united armour but I can clearly see how a frightened, terrified mother could easily be pressured or bullied into making that irreversible decision.
On the journey home the first day I said to John that I hoped the baby would die quickly rather than in my arms after birth because although it would rip my heart in two, it would be a miscarriage and I knew I could cope with that, having lived through it so many times before.
A few days later I told John I didn’t want her to die quickly, I wanted her to get to the age she’s be considered a stillbirth so that she’d at least have a birth certificate and thus be recognised by the state as having passed through.
A few days later I told John I DIDN’T WANT HER TO DIE UNDER ANY CIRCUMSTANCE!!!!!
So it took me those good few days to work through my emotions. Even though abortion was never for a split second on the cards, my initial emotional wish to get the problem over with in the easiest way. It took those few days of tears, prayer, talking etc for the maternal desire to fight at all cost to myself for my little child who was in trouble to really kick in. Had I not been steadfast in my position that life is not ours to take away, Louise would have been ‘terminated’ before I had a chance to reach the third and most overwhelming position.
Researching DW online I came across a medical paper which indicated that 92% of babies like Louise are aborted and we are all fully aware of the rapidly decreasing numbers of babies with Down’s Syndrome being born with a lot of western countries having a routine seek and find screening programme to ensure as few as possible slip through.
So this is what I wrote in reply to that loving older sister’s long post:
The first rule of medicine is ‘Do No Harm’ I can think of no greater harm than to deliberately take the life of an innocent child who has done no wrong other than to fail to reach the standard of perfection deemed necessary by our western medical system and by the eugenic attitude that has seeped into and become entrenched in our culture. Whose decision is it to determine whose lives are worth living and whose are not?
I sat beside an overseas obstetrician at a medical dinner one Christmas and he was boasting to me (18 days pre delivery) how pre-natal testing is helping reduce the cases of Down’s Syndrome. I asked him were they curing Downs then ? (knowing of course that they weren’t) ‘Oh no, they can be terminated…’
I replied that they could eradicate every known illness in that way. By killing every blind person, is blindness then cured? Of course not, you just have a lot of dead people and a lot of doctors who have done something which has no place in medicine.
Quality of life is not for us to determine, when I was pregnant with my baby who has DW ‘quality of life’ was all we heard about. The doctor gave the worst scenario, presented in a very brutal, un-compassionate and unkind way. She gave the worst scenario, but failed to present the equally possible best scenario that these babies can do amazingly well, that the love they carry along with them will blow you away, that they will cause a ripple impact of immeasurable good across the world – something very few of us can claim to have achieved with our eugenically acceptable lives, least of all doctors who march these precious babies off to have their quality of life removed from them, sometimes within hours of diagnosis. One couple I know were even offered an abortion in the Ultrasound room (which I’m guessing is illegal in any country) and were pressured to the point that the Dad placed a formal complaint with the hospital.
So some people by their disability cause others to have more difficult lives, to be tied down, to have siblings who have to learn to wait or put themselves out, but if to kill them is ok for that reason, why not kill the teenager who breaks their parents heart by drinking, drugs, cheek etc? Why not kill the person who has had a car crash and is left disabled? Or the girl I know who woke up beside her young husband one morning to find he had a stroke and her life now entails fulfilling her vow of ‘in sickness or in health’ ? should he be killed because he’s making someone’s life inconvenient? Of course not!!!
Human life has an innate dignity simply because it is human life, it’s dignity and value are not dependent on cognition, ability or ‘quality’. A eldest daughter in large family I know has profound physical and mental disability. The family care for her at home and by outside standards her quality of life is poor, however, her loving family can read her and her enjoyment of their interactions with her. People who call to the house first make a bee-line for her because she enriches them just by being who she is.
Finally, I’ll point to where the attitude of aborting children because of quality of life leads to : In Brazil, when the body of 9-year-old Patricio Hilario da Silva was found on a main street in Ipanema in 1989, there was a handwritten note tied around his neck.
“I killed you because you didn’t study and had no future,” the note read. “The government must not allow the streets of the city to be invaded by kids.”
There is no difference. Abortion has no place in medicine, it is not medicine and ultimitely no good can come out of it.
My Beautiful Louise Who Had No Other Advocate Except Her Mummy and Daddy
Ok ok, I’m the first to admit it, I’ve been neglectful in keeping my blog up to date. Part of the reason is my ever extending long finger but the other part of the reason has been my belief that we were home and dry and that Louise’s story had come to a natural end and we were going to continue into the future with our ‘normal’ baby. Somewhere in the back of my mind I had this idea of somehow publishing this story to date and the last sentence of my previous post seemed to me to be a fitting last sentence of my ‘epic’. Then I discovered that my blog isn’t ‘wordy’ enough to warrant any interest so I thought maybe I’d get it published and bound as a family story to pass on. There are some lovely websites that do a lovely job on publishing blogs in small quantities. Also, Louise has been developing quite normally as a quite bright (in my opinion) child and meeting all her milestones with time to spare. Her cardiologist, as I’ve been posting, is thrilled with her ( I think she’s his favourite patient ) and actually wrote to John as her GP in the last few weeks that he thinks Louise MAY need no further intervention and her neurologist has effectively discharged her. So that’s my convoluted range of excuses…you know the perennial advice mothers have always passed on that if someone presents more than ONE excuse they’re generally lying…
Yesterday, I realised that life doesn’t always unfold the way it seems to be heading. Home and Dry is a non existent state until we find ourselves actually in Heaven. Recently when people inquired about Louise I’ve been repeating my line that Louise has amazed us all, how we were expecting to have a sickly child with a short lifespan who would have trouble reaching her milestones, if at all, and instead we had this mischievous rascal who we have to constantly watch to see what trouble she’s getting into next…AMAZING!!!
Well I have mentioned from time to time that Louise has a vascular birthmark on her forehead, over her right eye and down the side of her face till it ends in an arrow shape about level with her ear, with a smaller one on the other side of her forehead. When she was born it was pink with a pattern of little veins in what looks like an aerial photograph of roads from above. The pink has faded leaving the mesh of veins which become more or less obvious according to Louise’s mood, temperature and so on. When she cries or is hot it glows white with the veins becoming very visible and at other times the whole mark is much less noticeable. I’ve also realised how very mannerly Irish people are in that nobody Irish has EVER commented on it. The only people (apart from doctors) who have ever pointed it out to me have not been Irish.
Yesterday we had our appointment with the birthmark clinic in the Children’s Hospital with the impression that we were just going to get a base line on how we’d manage the mark. Apparently there are optimum times for removing different marks, some are better removed in infancy and others better left till later. Honestly, that’s all we were expecting, not the revelation that this innocuous mark is actually the final piece in a puzzle that up to this we were unaware even existed. Peter, Louise and I headed to our appointment thinking we’d be in and out and after waiting in the lovely modern, bright (if hot) waiting room we were called in by the dermatology registrar. After introducing himself he sat down and remained more or less silent for the next half hour as he read Louise’s file from cover to cover, asking me a question from time to time. When he finished he looked up and said he thought he’d call in the entire team as they were all there at the time. He left the room and I waited 15 or 20 minutes until suddenly the room was suddenly filled with doctors!! (I have to interject here that a nicer bunch of people you couldn’t ask for) There was a buzz of anticipation in the room as they discussed the case and asked me some questions “…aah..the plot thickens..” is one of the remarks I clearly remember. Then the bombshell….”OK, she has PHACES Syndrome”
A lot of explanations later and it seems this is the position we’re in: Louise is a most unusual case in that we have come to it from a back-to-front angle. Generally the baby presents with the facial hemangioma and the dermatologist or plastics consultant requests heart, brain, eye and other tests to rule out anomalies. In our case all the anomalies have been discovered and handled separately before this definitive diagnosis which draws them all together. So what is it??
Here we go…
Posterior fossa- These are brain malformations that are usually present at birth.(Dandy-Walker) These brain malformations do not form after the infant is born.
Hemangioma- The hemangioma usually covers a large area on the skin of the head or neck (greater than 5 cm). The term “segmental” is sometimes used to describe these hemangiomas.
Arterial lesions- The abnormalities of the blood vessels in the neck or head.
Cardiac abnormalities/aortic coarctation- These are abnormalities of the heart or the blood vessels that are attached to the heart.
More serious complications may develop depending on the other anomalies that are found in the infant.
Infants who have PHACE syndrome may be at risk for other neurological problems even after the hemangioma has gotten better. These problems may include migraine headaches, seizures, developmental delays, speech delays and very rarely ischemic strokes. These symptoms may be the result of structural defects or cerebrovascular events from the arterial defects.
Infants with cardiovascular defects need close monitoring by a pediatric cardiologist for ongoing care and treatment. The most common cardiac defects associated with PHACE syndrome are coarctation of the aorta or other aortic arch abnormalities. If severe, the coarctation may require surgery.
Infants need to have frequent visits with an ophthalmologist if there are signs of eye involvement. They may need early treatment to prevent loss of sight.
Well as we know, Louise ticks all the boxes (apart from eye problems so far..she is eagle eyed). The doctors are 100% certain of their diagnosis and told me there are about 8 children in Ireland with this rare condition so she will more than likely be referred to a research programme as so far there is no known cause of PHACE.
I will mention here that I had actually heard of this condition before and had read about it thanks to Terri in The Dandy-Walker Alliance who had made the connection months ago and had sent me information on current research concerning PHACE and Dandy-Walker. Now that is what I call on the ball and I am truly grateful to Terri as I would have gotten a much greater shock yesterday if I had been more ignorant of the condition.
So what are the implications for Louise. Well really, because the problems accompanying PHACE have been mainly dealt with already, most of the tests they would now be requesting are unnecessary with the exception of a brain Magnetic Resonance Angiogram (MRA) in which they put dye into the vascular system and through a process similar to MRI under anesthesia look for any dilation of the blood vessels in the brain. These would not be detected in the MRIs which Louise has already had. What does dilation of the blood vessels mean? I don’t even like to write this word…aneurysms. It strikes the same cold fear for any parent as the word meningitis. So I am praying to God that this test comes out clear. I don’t know when the procedure will be done-I opened my big mouth and said she was going to have a heart MRI at 14 kilos and they said they’d do it at the same time. I am so stupid!! Louise is 9 kilos at the moment…she is a neat baby with not much baby fat so God knows when she’ll reach that weight!! We have an appointment with the cardiologist in September so I think we’ll push to have it done earlier than that. The doctors are writing to him anyway as well as the neurologist and John.
As a side issue, over the last month Louise has developed a problem with her thumb which we thought at first was a simple dislocation but which John quickly diagnosed as Trigger Thumb in which her thumb is locked in a bent position and cannot even be forced into the flexed position.
We had been waiting for an appointment to have it seen to but I thought I’d just mention it as I am aware that hand problems can go with Dandy-Walker. One of the consultants in the room was a plastics guy so he said he can deal with that…I was delighted as it saved me another appointment and I had also had the niggling concern that this was going on a long time not to have been seen to and was the delay causing harm? When all the other discussion was done and dusted he explained in detail what was causing the problem and that it wouldn’t correct itself so Louise is now scheduled for hand surgery in September which he will do. It’ll be a day case but under general anesthetic. So here we are, exactly a year later, Louise will be heading into surgery again. Of course I am fully aware that this is a minor procedure compared to her other operations but I’m still her Mammy and looking at it on YouTube it looks very painful. (I know, bad move Girl!!) It seems she’ll be in a cast for a few weeks afterwards.
So I’m spinning again.
In the meantime, Louise is continuing to entertain us all…
What a difference a year makes. Oh, what a cliche, but oh, how so very true. I somehow seem to have been propelled at high speed into the future and arrived here a year later with a little one year old treasure who has added so much to my life, (while at the same time subtracting so much from my accumulative hours of sleep!!) At one year of age you generally expect to put your little girl to bed at a reasonable time and go to bed yourself expecting to wake up in the morning-NOT 2am, 4am and 6am!!!
This little girl has me wrapped around her little finger and herself well entrenched in our bed. To give her her due, she’s mannerly in her demands and doesn’t cry and wail all night and really it’s my own fault. The truth is I really look forward to her night-time intrusions and even though I’m awake, I’m asleep!
Take Over Bid
With our first few babies we had this idea that the baby HAD TO SLEEP IN HER COT AT ALL COSTS-the cost generally turned out to be hours and hours of valuable sleep lost trying to settle a tot who would have slept happily between us, allowing us all a decent night’s rest. By the time Peter came along, through no conscious decision making process, he simply came in with us from time to time and slept in his cot most other times. No big deal. Now he comes in once in a blue moon just for a few minutes cuddle and reassurance and then he heads back to his own bed.
It’s the same with Louise and we’re wondering why we wasted so much time and energy year in year out over something which is ultimately so temporary…neither of our teenagers ever come to sleep in our bed. Our pre-teen never comes to sleep in our bed. Our tween never comes to sleep in our bed. Time passes and before you know it the children are not only not in your bed-they’re not even in your house.
I once worked with a lovely lady who was close to retiring age. She had reared 11 children and had been widowed quite a number of years. Out of the 11, only one daughter lived about 50 miles away and all the others lived abroad. I’m sure there were times when they were all small she had wondered whether she could brush her hair in peace…now she lived alone in the farmhouse she had reared her large family in. Silence. I sometimes think of her at times when I’m wishing for that ‘ME time’ and remember to be careful what I wish for-I might just get it some day!!
So we’re enjoying our night time cuddles while we have them. John sort of enjoys the nightly pummeling of tiny restless sleepy feet on his back as the baby cuckoo tries to eradicate the competition. I sort of enjoy sidling closer and closer to the edge of the bed to accommodate this baby koala bear making sure she’s no more than 2 millimeters away from Mummy at all times. ( Might I recommend Boots No.7 Under Eye Miracle Worker!! )
Anyway, as you can read in the neurologist’s report, Louise has surpassed all our hopes as regards her neurological development and we don’t need to see him again presuming nothing changes. The good thing about having awareness about her Dandy-Walker is that if she starts getting recurrent headaches or any other symptny time in her life (as sometimes happens in DW) we will be immediately alert as to this possible cause and not simply put it down to migraine or something minor. Quick intervention will be guaranteed. Hopefully we’ll never need it but forewarned is forearmed.
When we visited the cardiologist recently he repeated how pleased he is with Louise-her colour is great, even better than expected. He again said though it’s FAR too early to tell until Louise gets walking and running around putting the lower body circulation to the test, some (as in a very few) children never require the last operation.
“so basically we’re looking at anything between age 3 and never?” I asked.
“NEVER sounds good…” he replied.
OH I know I shouldn’t get my hopes up but who wouldn’t? Imagine if she never had to go through that again…that really WOULD be a dream come true!! In the meantime, continue with all the medications, check-ups and an MRI at 13 kilos with the plan to operate when she’s 15 kilos. It’s deliberately not something I allow myself to think about just now. We’ll be given the strength to live through that day if it comes just like we were given the strength to live through that worrying pregnancy and the two surgeries. Before this all happened I used to wonder how parents coped in situations like this (and worse) but for sure God sends whatever graces are needed. When you’re not in a situation and just anticipating or worrying about something that ‘might’ happen, you don’t have the God-given grace to cope with that thing so it seems like an unmanageable burden. When you actually have that burden, I believe that’s when God kicks in and carries the majority of the load. I don’t think He was joking when He advised us
“Come to me, all who labour and are heavy laden, and I will give you rest…..For my yoke is easy, and my burden is light.” (Matthew 11:28-30)
OH WOW!!! That means a lot to me now!! My burden is light…WHAT burden? Louise is far from a burden, she’s full of life, she’s affectionate, cuddly, beautiful and everyone whose life she has brushed has benefited from her. Her sufferings as a tiny baby have made us and others look at our own small discomforts and complaints and see them in a different and more realistic light. Let’s face it-aren’t most of the things we whinge and whine and lose our peace over nothing but the normal pin pricks of life which we blow out of all proportion. A bit of the old Me, Me, Me culture?
On Friday last Louise turned one year of age. Considering we’d had an extra special celebration for her Christening, we decided we wanted her birthday to be understated so we marked the day with the grandparents, aunties, uncles and cousins attending evening mass in the parish in thanksgiving for Louise and to acknowledge the little miracle she is.
We followed up with champagne and a lovely cake made by me and designed by Rebecca (though we spent so much time looking at ideas for 1st birthday cakes online it was a big rush to actually make it )
Click this TINY link ….
It was a very special evening.
Thank You God for all you have done for this little treasure.
And Thank You for picking US!!