Merry Christmas my angel

Isn't it sad when the only new Christmas pictures you can post of your baby are these?
I miss you so much my little Kendra, especially now.
We all miss you.
You would have been 20 months old now. I wonder if you would have been sitting or crawling? I don't think you would have been walking yet but who knows? I certainly don't and I never will. I suppose it makes it easier to think that wherever you are now, you can run and skip and jump. I tell myself that when I am feeling sad, but the thing is I just don't know. I have to believe that I will see you again or I will go mad with the sadness of it all. I just miss holding you right here and now. Empty arms. They feel so very empty sometimes.
Your brother is visiting Ouma and Oupa and all your PE cousins at the moment so the house is very empty and quiet. I hope you are watching over him so he doesn't miss us too much. I know he misses you a lot.
Time to go before I get too sad. Ooops, too late! I love you my baby. Merry Christmas.

Sometimes...

... you feel like you are really ok and are going to survive this. And then along comes Christmas. I am really not in the mood for Christmas this year. I have not done much shopping and am afraid my gifts are all going to be really sub-standard. I just cannot think what to get anyone. I keep thinking about last Christmas and Kendra being here. I have actually just been having a bad couple of days. We went camping this weekend and I really did enjoy it. Of course, like most family events I would keep thinking how it would have been different if Kendra had been there. Not better, not worse, just different. Then when I got back I had a bit of a downer, just a bad few days.

Last night we went to dinner at a restaurant where we had been before with Kendra. And of all the tables there, Gathry wanted to sit at the table where we sat with her last time. He hadn't remembered that we had last sat there with her and agreed to sit somewhere else when I said I didn't want to sit there. Strange the things that affect one.

We are going to PE to his family for Christmas. I know it is going to be a difficult Christmas without Kendra here but I suppose being away from home will be a bit of a distraction and Branston will enjoy being with his cousins. I probably won't update again for a while so would like to wish everyone a merry Christmas and a great 2007. For us, it just has to be better than 2006.

I would also like to wish Raichelle a happy birthday for yesterday and aunt Ethel for the 23rd.

Hi there Charli

Remember Charli? She also has Jacobsen Syndrome and is now almost a year old. She had to have a huge operation recently to change the shape of her head. Here is an extract from the letter her mom sent me. We have been keeping in touch as I am really interested in seeing how Charli develops. I think it will give me a bit of an idea of how Kendra may have developed. Although I think developmentally they were/are quite different. Initially I was also able to give her mom some support/guidance or basically share experiences but now I think she has progressed beyond needing that as Charli will soon be older than Kendra got to. Isn't she gorgeous?

Before the operation.

After the operation.

Charli had her operation on Wed 8/11 to correct her craniosynostosis. It was a success and she is on the mend and we got to come home yesterday so she was out after 5 days but it was possibly the hardest thing I have ever been through. It was just so heartbreaking to see her so helpless and vulnerable and there was nothing I could do. Charli was admitted the day before and given platelet transfusions, then more during the surgery and afterwards. Besides a bit more than average blood loss (she lost 1L and was given 2 transfusions) it all went really well. She still has a lot of swelling and bruising but has good colour and no temps anymore. I was prepared to see a lot of swelling and bruising but nothing could have prepared me for how white she was, she was almost translucent. It gave us a big fright but that's all over and done with now.

I will send photos of her new little head. Originally they were just going to remove the strip of fused bone down the centre and 2 strips of bone from both sides of her head so that her brain would have more room to expand out. This would have meant that it would be a long time to see a result as her skull would have just grown around her brain shape. But amazingly the day of her surgery they decided to do the major op involving leaving the strip of fused bone and taking the 2 side plates and front plate out moulding it to a rounder shape then reattaching it (it took 5hrs). The plastic surgeon apparently did the same surgery on another Jacobsen's child a month ago and it was a success so they were confident Charli could be kept stable.So I guess the operation being postponed in August happened for a reason. Doing that op meant that Charli has the round result straight away and better still no more operations are needed. But I have to say after seeing what she went through I don't think I would subject her to more surgery anyway.

She is doing really well and is the strongest little girl. I tried to stay positive but it was always in the back of my mind that there was a chance of losing her and I just don't know how I would have coped. But you know what if we had have lost Charli I would have known she would have had a little friend named Kendra waiting for her in Heaven and that is comforting.

I was a little worried that Charli would lose a lot of weight and perhaps forget some of the things she had learnt but she is back to doing all her old tricks and only lost 20 gms she weighs approx 7.5kg. Charli has been sitting for a few weeks now without support, rolling, weight bearing and has 3 teeth. She loves her solids an prefers them to her bottles.

I was hoping you might if possible mention something on your blog site just so that other people with Jacobsen's kids know that with platelet transfusions it is possible to keep the kids stable for any surgery that is needed. The docs were very unsure of how to deal with Charli's situation because it is not very common.

Edited to add: Ok, I cannot get the captions to appear next to the proper pictures. Blogger is not that wonderful sometimes. But I think you get the idea.

Kendra's bench

Kendra's bench and plaque are ready! The bench is in place. I have more photos which I will put up soon (when blogger stops giving me problems). We must still go and attach the plaque. We put Kendra's new website address on it which for the moment I will just link to the blog. But we still need to get hosting and find out how to link it etc etc and I don't want to put the plaque up until that is done. We thought that it would be a good idea to put the website address on the plaque so that if people are curious about the gorgeous baby, they can go and read about her. We also want to maybe use the website later on to spread more information about special needs children and make people more aware of them.

I hate that the only new photos I have to post here are of a grave and bench and plaque when I should be putting up photos of a nineteen month old baby girl. That sucks big time.

Congratulations

Another cousin for Branston and Kendra. A big CONGRATULATIONS to my brother Ian and Sonja on the birth of little baby Savuti, born at 6:11am on 6 November (interesting number combination - 6:11 on 6/11!!). She was a healthy 3.28kg and is doing well. Sorry about the quality of the picture but they sent it to my phone and then I sent it via MMS to my mailbox.

Another set of congratulations to Tertia for her appearance on Carte Blanche tonight. It was a very good piece. T, I know I said I would do a review of your book here and I most definitely will, soon, soon.

The Special Needs group had a wonderful breakfast last weekend. It was great to have such good attendance. I did have a bit of a wobbly while holding Tammy's baby but I don't think anyone noticed as I passed her on very quickly and went to the loo to compose myself. She is 3 months old now and very cute. I think it was just the way she held my finger that brought back memories.

I have been holding it together quite well lately, almost too well I sometimes feel. I have had to tell a few more people of her death and have managed to do it without getting all upset about it. I suppose that great big rip in my heart is forming scar tissue. I just worry sometimes that the scar tissue is not very strong yet and will rip open again. But we will cross that bridge when we get to it, in the meantime I am doing ok.

Some pics of bench and plaque to follow....

Babies everywhere

Sorry for being such a terrible blogger. I just have not being feeling like writing anything lately. It seems like pretty much everything has already been said. I still have ups and downs. I don't cry as much as I used to. I suppose that is a good thing. I need to get stuck into doing some more scrapbooking. I am having withdrawal symptoms. I think I will probably attend a class or 2. The shopping centre near us has expanded and they have a new scrapping shop which is doing classes.

Myself and Branston went for a walk around this new part of the centre yesterday and 9 people out of every 10 seemed to be carrying babies, generally girls. It was open season for babies. Now, generally I am ok with seeing babies but this was just so 'in your face' that it was just a bit much. Especially when I had just been asked by the mother of one of Branston's schoolfriends how my daughter was doing - 'She must be walking already'. I really thought all of them knew but obviously not. I found though that it is getting easier to tell people even when it catches me by surprise. Slightly easier but not easy, if you know what I mean.

I then went and dreamt last night of people asking me how she is. I think about 3 or 4 people asked me in my dream about her and I had to tell them what happened. Eventually it got a bit much.

This whole decision of whether to have another baby is also getting to me. We have talked about it and Gathry is not that keen for his own reasons. I think that I do have a need to have another baby but that is just it - a need for a baby but not necessarily a need for a child. It is difficult to explain. On the one hand, I want Branston to have a brother or sister (I actually don't mind which) but on the other hand, by the time they are old enough to play with him, he will be 10 or 11 and probably won't be interested. I think about the expense and work involved in having another child. The things that I want to do that we would have to put on hold. The thought that I am nearly 40 and I will be in my fifties during this child's teen years. What if there was a problem with the child and they needed lifelong care. Now don't get me wrong, I would happily have looked after Kendra as long as necessary and if I could choose I would want her back in a heartbeat. But knowing the challenges I would face do I want to risk it again? Do I want to risk heartbreak again? Some women whose blogs I have read, lost their babies and then went on to have a miscarriage. My heart just breaks for them. Can I go through that and come out in one piece?

On that note, I wish I could just dive into the internet and go and give Emma's mum a great big hug. Instead a big virtual hug to you, Emma's Mum. I am thinking of you and I hope others reading this will also send you and your family some love and support.

Anyway, Christmas is coming up soon. Without Kendra. She only had one Christmas with us but this Christmas is going to be a little bit empty (ok, a lot) without her.

Fixed

I have fixed the comments and posted some photos of Branston's birthday on his blog. Thanks to those who let me know the comments were not working.

Happy Birthday Branston

A big Happy Birthday to big brother Branston from Kendra.

Branston thoroughly enjoyed his birthday weekend. He had a party on a farm with pony rides, quad bike rides and tractor rides. The theme was Pirates and all the kids dressed accordingly. Then he had 3 boys for a sleepover on Saturday night. Well, don't think I'll be doing that again in a hurry! I have created a blog for Branston which is his very own - www.branstonmeiring.blogspot.com. I will be posting some photos of the birthday party there soon. I have been thinking that I need to focus on the present and future and stop thinking about the past and what could have been. Easier said than done, I know. And that does not mean that I want to forget about Kendra and that period of my life, but I cannot allow myself to dwell on it in a negative way or I will go mad.

One of the moms at Branston's party who I did not know said to me that she remembered me from some school do, I have a baby don't I? So I said 'Had a baby' but of course she did not get it and proceeded to ask how old the baby was. I think she thought I meant that she was older now and no longer a baby, so of course I had to tell her. I think she felt worse than I did. It didn't seem to upset me as much this time. I think I have been practising telling people in my head so that I don't get caught off guard and can tell them more easily.

I am busy sorting out the links on the right. Stay tuned for more blogs to be added.

I just want to thank those who have left comments to my postings. I really do appreciate the support and it all helps, especially during a bad patch. Special thanks to Susan from VA. Thank you for still reading my blog. I think that reading what someone else is feeling who has been through the same thing often helps us to work through how we are feeling. I often read blogs of moms who have lost babies. Sometimes it makes me sad, other times I feel better. And whether the baby died at or before birth or later on, those feelings are all the same. Some of us are lucky enough to have more memories of our little angels and I have wondered if that makes it easier or harder to deal with, but the answer I think is that nothing makes it easier. All of our experiences are unique yet the same.

Kendra now has a bench! I ordered a bench to be put by her grave so that we can sit there more comfortably when we visit. I have ordered a plaque to go on the bench. I will post photos once it is done.

.

I am sorry for not doing any postings lately but I have nothing. I am empty. I don't know what to say that hasn't already been said. Been going through a bit of a bad patch lately. Will probably write about it sometime but not right now.

It is Branston's birthday on Monday and he is having a Pirates of the Caribbean themed party tomorrow. He is so excited. We were going to have it at home but decided not to since the house needs some fixing up. I am glad we made that decision as last year's party was at home and Kendra was there so maybe it will be better elsewhere.

24/9 - 6 months

Thank you Mom for the flowers and lovely message. Love you.

K is for Kendra

I made this as a little something to wear close to my heart that makes me think of my baby. It is made of art clay silver and we (a group of friends and I) attended a half-day course and all made some lovely silver jewellery. Neat, hey?



Edited to add: Please note that the time on these posts is not the actual time. The server where these things are stored is in the USA or somewhere and it does not keep SA time. It is actually 5:30pm now.

Another tricky question.

Another Saturday, another tricky question. I went to the hairdresser today for the first time in absolutely ages. I mentioned something about my son and she asked 'Do you only have the one?' I really didn't feel like going into the whole story right then esp. with a total stranger. So I said yes. And then proceeded to feel really bad, as though I was denying her. So then I wanted to say 'Actually I have a daughter but she is in heaven now' but she kind of started talking about other things and to other people so I just kept quiet but it affected me so badly I was having hot flushes and wondered how nobody could notice how emotional I had become. But I seem to be quite good at covering up and aside from slightly teary eyes I looked ok. Anyway, had a strong cup of tea and felt a bit better afterwards.

Then I took Branston to a birthday party which was not too bad, I even played a bit of beach volleyball (well, attempted to). Then I was chatting to a lady about birthday parties and she said "oh, for your daughter?' and I said 'no, my son'. 'Oh, do you just have the one?' Well, what do you know. I think I just kind of changed the subject and moved off soon after that. Then the mother of the child whose birthday it was, had to express her sympathy and ask questions etc etc. and I could not get out of there fast enough.

So, all in all a delightful day! I have also had 2 dreams of Kendra in the past few days, after having only the one since she died. I was told to write down all the dreams I have of her in case I forget them so I hope you don't mind if I tell you all as well. Sharing is healing so they say.

Dream 1: This is the dream I had about a week after she died. She was lying on our bed but I knew that she was dead. For some reason her body had not been cremated and was returned to us. Then she turned her head, opened her eyes and looked at me. Then I woke up. That was a very bad day.

Dream 2: I had this dream on Thursday morning. I had stayed home with a migraine and was trying to sleep it off. I dreamed I was shopping with my mom and I was carrying Kendra around in my arms. We did a whole lot of shopping, they even gave me a chair to sit on while my mom paid for everything. Then it skipped to a bit later, myself, my mom and Branston were walking down a farmroad somewhere. Branston started telling my mom how I had been carrying Kendra and I said yes I was and my mom said something about having to accept that she is gone (in the nicest possible mom-like way) and it was as though it hit me like a ton of bricks. I stopped dead in my tracks, Branston had wondered off somewhere, and it was like I couldn't stop this terrible sound coming out of me, I can't explain it. I woke up and was so sure that someone must have heard me but it was all in the dream.

Dream 3: This dream was this morning and it is mostly quite vague. It was almost like current day with no Kendra and we were out doing things. I think we were on holiday. I remember walking past some restaurants and trying to decide where to have lunch. Then we got to the place we were staying and suddenly realised that Kendra was in the bed there and we had forgotten to change her and feed her that morning. She was lying there quite happily, just sucking on her hand but was soaked through. A really awful feeling. How could we have forgotten our baby?

I suppose each dream is an indication of my mental state and one could analyse them to death but I won't right now. Just needed to write them down.

How is your baby?

How does one answer this question? How is your baby? Someone asked me this at a party this weekend. Obviously someone who does not know us very well. We see them every few months over dinner with lots of other people and talk is always general, not of a personal nature. I did not even know that they knew I had a baby. It knocked the wind right out of my sails. "Well, um, well, MY baby? My daughter you mean? Um, well you obviously don't know. Um, she died in March this year. 5 months ago. Umm........ yeah.' I have gone past the use of the phrase 'passed away'. Why should I try and make it sound any different than it is. She died. Deal with it. We have to every day.

Anyway, that was a bit of a conversation stopper. Although the others in the group I was standing in kind of covered up quite well with slightly high pitched light chatter, trying to cover up an awkward silence. I felt quite sorry for her, she did not know and why should she? But that is the kind of thing that gets to you, these things that hit you out of the blue, when you are trying to just have a bit of a good time for a change.

Also at this party was someone else who had a baby a week before I had Kendra. Her baby was there too, being ultra cute and walking around all over the show. Also quite tough. I am pretty sure that Kendra would not have been walking yet or even sitting for that matter. So it is difficult to look at another baby girl of the same age, yet maybe not as difficult as it might have been if I thought that Kendra could have been there playing with her, running around. We don't know what she would have been doing at 16 months. Will never know.

Spare a thought for baby Joseph's family. They are going through a tough time at the moment and I think of them a lot. My heart aches for Carole and the whole family.

Also some belated birthdays. I did not wish Rathla happy birthday because they do not have a computer at home so I doubt they will ever get to read this but anyway, someone can print it for him..... HAPPY BIRTHDAY RATHLA!!!!!!

Happy birthday Joanne for the other day. I hope you had a great day. Sorry a bit late.

Please sign my guestbook

Who are you? I would really, really like to know who reads my blog. Even if you don't want to tell me your real name, I am interested to know why you read what I write. I never thought I would ever write stuff that other people would want to read about. But here we are. Me writing and you reading, because of one little girl who is really being missed today, 5 months after she left us physically. But I felt really close to her today, like she was here with me, almost comforting me. No tears yet for the 24th but there is still bedtime.

So please leave a comment, telling me who you are and why you read my blog. I would really like to hear from you all out there in blogland.

Congratulations

Happy Birthday to Kayleigh!















Congratulations to Tammy, Dave and Connor on the birth of little Courtney. She is gorgeous! I will put more pics on K.I.D.S group blog later.

Other blogs

First of all, some pictures which I modified. I removed the background and just made it all one colour. Not too shabby if I say so myself. The top picture is of Kendra at about 1 1/2 weeks old on my mom's arm. The second one is her foot with her brother's. Also taken at the same time.

I have been reading a number of blogs over lunch and in the evenings. I hope they don't mind me mentioning them here. One of my favourites is a colleague and friend of mine, Tertia. Her blog, So Close, started off as her journey through infertility and was a way to express her feelings during this time. Now, after many, many sorrows and difficult paths, she has been blessed with a gorgeous set of twins. I read her blog because she is witty, insightful and basically tells it how she sees it. If swearing offends you then don't read it, but I find it refreshing, plus there are pics of the beautiful babes in it. Tertia also suffered losses on her path to becoming a mom and it has been good to speak to someone who can identify with how I feel.

I don't know why I am so compelled to read blogs written by women who have recently lost babies, maybe it is that I can identify with how they feel. I read their blogs and think 'Yes! that is exactly how I am feeling!'. Sometimes it can be a bit depressing and make me sad, but more than that I want to see how they are doing, not because I want to read about their suffering but because I want to see how they are coping. Sometimes they will have a very sad post, sometimes negative and sometimes hopeful. I like to sometimes leave a comment in the hopes that it will help a little but I know that there is not much that does. These are the ones I read most often:
http://everythingisundercontrol.blogspot.com/
http://missingspeedjr.blogspot.com/
http://allaboutbabydrew.blogspot.com/
http://thejourneyfromhere.spaces.live.com/ (This one is a bit different as the baby is not yet born. My heart just aches for that family.)

I also read about some very special little children with special needs. I love to read about their progress and think about how Kendra would have been doing now. These are my favourites:
http://www.micropreemietwins.blogspot.com/
http://belovedmonsterandme.blogspot.com/
http://www.indecisivegirl.blogspot.com/
http://babababies.com/view/view.cfm?SiteID=31032
http://cerebralpalsybaby.blogspot.com/
http://www.lebers.co.za/index.html

Then there is the world of infertility to which I have been introduced by Tertia. Although I cannot identify with these women as I fell pregnant fairly easily, I have come to understand a small part of what they go through by reading Tertia and other's blogs(and soon to read Tertia's book).
http://nobs2.blogspot.com/
http://thenakedovary.typepad.com/the_naked_ovary/
http://alittlepregnant.typepad.com/
http://julia.typepad.com/julia/

And when I need some non-child related reading:
http://dilbertblog.typepad.com/

If any of the above people should read my blog and object if I put links in on the side to yours please let me know.

I would also like to know who is reading my blog and why. But I am going to create a separate post as a guest book as I have seen some other clever bloggers do so hold on till I do that and then please tell me who you are. But not yet!! Wait!

It's hard

It's hard to believe that a person can shed so many tears.

It's hard to believe that it's only been 4 1/2 months.

It's hard to believe that the world can continue like nothing happened.

It's hard to believe that some people expect you to 'get over it'.

It's hard to believe that I will never get over it. And I know I won't.

It's hard to believe that the world was once sunny and bright. It seems very dull now.

It's hard to believe my little angel would have been 15 months old already.

It's hard to believe she is gone.

It's just hard, that's all.

Something else...

I thought I would write about something else today. I watched a program on TV the other day about violence in schools . It scared me. How do you protect your child from other children at school? It has gone beyond 'normal' bullying and seems to be much more violent. I used to hear the odd story about a child that was stabbed on the Cape flats or somewhere else and I would think that something like that will never happen where I live. But it is happening all over. Middle class and more affluent areas are affected just as much as the so-called poorer areas. Branston is in a private school because we thought that he would have more opportunities, be more protected, have a better chance in life. But the kids in private schools generally have more money to spend on drugs and other things. I am not saying that all kids in private schools use drugs but you cannot say that there is less of it there than in public schools.

I blame TV and movies for the violence. Ok, so we shouldn't allow him to watch violent things but do you know how hard it is to find non-violent programs on TV? Even cartoons are violent. I mean, are Tom and Jerry not always trying to beat each other up or eat each other? On TV the heroes can get shot or thrown off a building and walk away from it. We always try and explain to Branston that the things he watches on TV are not real and he must not try anything like that at home. But what about other kids? We have no control over them.

It's when I read these stories and others about murder and rape of young children that I start thinking maybe Kendra had the right idea. She is in a better place and will never risk being exposed to all these bad things. Don't worry, I am not thinking of joining her and I do know that there is a lot of good in the world eg here. I do just worry sometimes about what is going on out there.

4 months

Isn't it strange how 4 months can seem like a lifetime? 4 months is a third of a year, half a pregnancy (well, mine anyway). On the one hand the year seems to have flown. I can't believe it is the end of July already, yet the last 4 months seems like an eternity. 4 short, but oh so long, months since I held my baby in my arms. Today has not been a good day, as you may be able to tell. And then this evening, for the first time since AK (after Kendra), Branston wanted to read to her when he did his reading homework. He used to do his reading while I gave her her bottle. So I took her picture down and put it on the table so that he could read to her.

On a different note, we had a lovely holiday. We took 2 weeks off during the school holidays. For the first week we went to Sun City. This was a gift from some very kind people. You know who you are. We cannot thank you enough. It was great to get away and spend time together without worrying about buying milk, feeding animals, cleaning house etc. We were able to spend time together and get used to being a family of 3 again. Branston had a ball. So many new experiences for him. I did have a few moments of sadness when I saw people with babies but we kept pretty busy so there was no time to dwell on what could have been. It was a great week.

The second week we spent at home painting Branston's room - doing our own extreme makeover! Well, not that extreme and we haven't finished yet but it is looking qutie good if I say so myself. I don't know if I have energy to do the rest of the house though, as is our intention. Painting is quite hard work, although rewarding. I am glad that we didn't get around to doing up Kendra's room yet as I don't think I could have handled going into a room done up for her. She slept in our room and her clothes were in the study.

I have started her scrapbook. I have only done 1 page and don't really know what I am doing but it is interesting and I will learn as I go along. I will have to post some pictures of the pages as I finish them.

I have been considering stopping this blog. I have not felt like writing up anything for a while. I mean, who wants to read about my grieving. This was supposed to be a blog to keep people up to date about Kendra's progress. Maybe I should start a new one. I want to start a separate one for Branston anyway. Any thoughts? I can see by the comments that it is still being read and I thank you all for that and for all your comments. Strange as it may seem, they do help even when I don't know who they are coming from. So maybe I should carry on. I will see how it goes.

I would like to dedicate this song by Celine Dion to Kendra. I was going to have it sung at her memorial service but for some reason I didn't. I can't remember too much about my thinking back then. It is called Fly and could have been written for Kendra.

Fly, fly little wing
Fly beyond imagining
The softest cloud, the whitest dove
Upon the wind of heaven's love
Past the planets and the stars
Leave this lonely world of ours
Escape the sorrow and the pain
And fly again

Fly, fly precious one
Your endless journey has begun
Take your gentle happiness
Far too beautiful for this
Cross over to the other shore
There is peace forevermore
But hold this mem'ry bittersweet
Until we meet

Fly, fly do not fear
Don't waste a breath, don't shed a tear
Your heart is pure, your soul is free
Be on your way, don't wait for me
Above the universe you'll climb
On beyond the hands of time
The moon will rise, the sun will set

But I won't forget
Fly, fly little wing
Fly where only angels sing
Fly away, the time is right
Go now, find the light

Finally

At long last Kendra's plaque has been completed and she was finally laid to rest. Exactly 3 months to the day after she died. We (just the family and the nanny) went out yesterday morning so that we could place her ashes into the grave and have it sealed. The plaque/gravestone is beautiful. The picture of her came out really well. There isn't really much more to say. Rest in peace, my beautiful baby.

She was laid to rest on her granny's birthday. Happy birthday Granny. And happy birthday to Grandpa for tomorrow.

Birthdays and other things

This is a picture of Kendra and Branston and their cousins from PE at Kendra's christening. Today is a special girl's birthday. Happy birthday Vangie. Sorry we did not phone you. I hope you had a super day.

Another happy birthday goes to Oupa for tomorrow. Happy birthday Oupa. We hope you have a wonderful day.

A while ago Susan and Michael left a comment on Kendra's World saying that they were expecting a baby with Jacobsen Syndrome. I sent them an email but have not heard from them so do not know if they received it or not. If you did receive it then please let me know. I hope things are going ok with you and the baby. If not then please send me other details. I would love to contact you and share experiences and help you in any way I can. Please do not feel hesitant because Kendra is no longer with us. I really would like to hear from you.

To my sweet Kendra

I miss you so much. I think of you all the time. Not an hour goes by when you are not in my thoughts. Is that wrong? Is that obsessive? Some might think so. Silly little things make me think of you.

Whenever I use Spray and Cook on the pans when cooking I want to go and do it by the window because that is what I did when you were watching me cook. Whenever we go anywhere I keep thinking that I don't have everything because I am not used to taking so little with me. With you here, it was nappies and bottles and changes of clothing etc. When I drive past Baby City and the other baby shops on the way to your brother's school I still think of going in to buy you stuff.

When my friends are all bleary eyed from lack of sleep because their baby is teething, I wish I could have no sleep for that reason. Or have to wake up at 6am after a party. Gosh, I really love my sleep and here I am wishing for less of it!

I don't like it when people talk about hospitals and doctors because it makes me think of your last week. I was at a talk a few weeks ago where the speaker was a doctor and he was joking about heart monitors and flatlining and stuff. I almost left the room. I think I hyperventilated a bit. Nobody noticed, I don't think. I keep thinking about the last time we made eye contact. You looked straight at me and I could see so much pain in your eyes, yet I couldn't help you. I felt so powerless. Yet that helps me now sometimes because I know you are free of that pain, of any pain. At least you did not have to continue suffering.

I sometimes wonder if you would have been sitting yet. You were very close. You were just starting to roll over nicely, with a bit of encouragement. We have been wondering if we should have another baby. I don't know, Kendra, you are a hard act to follow. Nobody could take your place and I wouldn't want anyone to. Time will tell.

I must go to bed now, my angel. It is late. I can't say I will dream of you because strangely I have only had one dream of you since that day. It was probably too upsetting for me so hasn't happened again. Good night, baby doll, I love you.

Kendra and friends

I found some pictures which I though would be nice to put up. Kendra with aunty Sonja, cousin Franci, and friends Amber and Hayden. She was loved by so many. Little Amber still talks to her and prays about her.

Branston climbed into bed with us early (very early) this morning and started talking about her. Says his main memory is of her laughing. I am glad that he is talking about her more. We have not pushed him and have let him grieve in his own way. But children are so different to us. I think he will be ok. We will all be ok. I have been having quite a few downs of late and those feelings will never go away but we have to move on and concentrate on our lives.

PS: Branston and Kendra want to wish their Ouma happy birthday for the other day. I wanted to do a posting on the day but it was a bit hectic (emotionally) last week.

Today

Today was not as bad as I thought it might be, but then I find that when you have prepared yourself for feeling bad, the reality is not as bad as what you were imagining. I went to a talk on ADD and ADHD children tonight (apparently Branston's problem). Firstly I was nervous because it started at about 7:30 and you know what happened at about that time 2 months ago. Secondly the main focus of the talk was about the effect of ADD on siblings. But I thought it might help to meet some people with similar problems and I also told Y that I would go with her. I think being amongst people helped me to try and switch my mind off and try and focus on something else. It was ok.

Now I am trying to download my blog to make sure that I do not lose any of it and I also want to keep all the lovely comments that people have made. I don't know..... I followed instructions but it does not seem to want to work. The blog should come up with a different format and with all posts and comments together on one page. But that is not working... for now. It will probably come right in the night and look a total mess tomorrow. So just excuse it if it looks funny, I hope I can get it back to it's proper state again afterwards.

2 months

Tomorrow it will be 2 months since my baby died.

I have been going through a bad patch where I just don't feel up to posting. Even now, it is too difficult. I started seeing a grief counsellor. She says I am too calm. I said I have to work, look after Branston. If I start being 'not calm' then I don't think I will stop very easily. It feels almost like I am holding myself together with string. I just hope that string does not snap.

Strange how 2 months can feel like a lifetime.

Happy Birthday Nanny

This is a picture of my gran (or Nanny as we used to call her) with Branston when he was a baby. She passed away is September 2001 shortly before 9/11. That was a bad September. First my gran passed away, then 9/11, then Gathry had an accident and broke his collarbone then my brother and his wife were retrenched (they were in the tourist industry in Botswana and after 9/11 it suffered big time).

But now when I think of Nanny, I think of Kendra with her and I know that they are looking after each other.

Happy Birthday for tomorrow Nanny. I know Mom has put some flowers next to your picture in her house and that your picture now shares a table with Kendra's picture. I wish you could have been here to meet Kendra during her short stay with us but now she is with you.

Mother's Day

What a special day this was last year. I had 2 children then. Still do, but one is no longer here with us. I cannot hold her in my arms. But I cannot say that the day is not special either, my husband and son have gone to such trouble to make it special for me. So it is special, just in a different way. My son made me a card on the computer, from him, his dad and his sister. He also chose the gifts himself including a locket on a keyring with space for photos. He also gave me a picture which he coloured in which I know took a lot off effort as he does not finish things easily (that is the topic of another day's discussion). And we are going to the Moscow circus this afternoon, which took a lot out of Gathry, not because he does not like the circus, or that it was so expensive, but because he believes it is a bit of a ripoff at that price, plus he is missing the Grand Prix!

So I want to say, my darling Kendra, this is a special day but would be so much more special if you were here with us. I have really been missing you a lot these last few days. A lot.

I took Branston to the doctor the other day and when we were paying, there was a lady in the waiting room holding a baby. It must have been about a month old. I so badly wanted to hold that baby, I think she must have thought I was a bit strange as I kept looking at the baby. Strange that seeing other babies did not seem to bother me too much before, now, just as I thought I was having lots of good days, I find myself looking at babies all the time and feeling really sad. I suppose it is part of the cycle of grieving but damn, it is hard.

I also want to say happy mother's day to my mom and Gathry's mom, who no longer have mothers to phone today but I know that Kendra is with both her great grandmothers, keeping them company so none of them are alone today. I also want to say happy mother's day to Tammy who has been through a really rough time lately with Connor in and out of hospital. I am thinking of you, my friend, and am sorry I have not been able to help you much but am a bit of a basket case myself. I am also thinking of all the other moms out there who have lost their little ones. I know exactly how hard it is, but we have to get through it for the sake of those others who love and depend on us. Anyhow, time to dry my tears and go to the circus.

Meet Charli

This is Charli. She is almost 3 months old and also has Jacobsen Syndrome. Charli's mom found us through Kendra's blog but unfortunately only after Kendra had passed away. I wish....... well, it would have been so nice to have the 2 of them grow up "together" and for us to compare notes about having a JS baby. They may never even have met because Charli lives in Australia, practically the other side of the world. I have asked Charli's parents to keep me updated on how she does. She is the first baby with JS whose parents have corresponded with me (the others have all been much older children) and I am very interested in her progress.

Charli's breakpoint (section of chromosome where breakage occurs) is 25, Kendra's was 23. They have many similarities, yet Charli seems to have more physical problems, but from what her mom said is progressing quite well with her milestones. Her blood platelets are extremely low as were Kendra's although Kendra's count did seem to come right after a while, only dropping when she was ill. So hopefully Charli's count will also improve with time. The plates in the back of Charli's head have fused prematurely which is a problem as she will require surgery to correct this. We were worried about Kendra's head shape as well but she checked out ok.

Charli also has ptosis of her left eye and they are still waiting to see what has to be done about that, possibly also patching. The physio is happy with Charli's progress and says she has good muscle tone and should do well with a bit of physio. If there is anyone out there who wants to get in contact with Charli's parents they can do so through me. They are very interested in corresponding with other JS baby parents.

On a sad note, Kendra's nanny finished working here yesterday. She has found a good job with a single mom who has a 3 month old boy. I am very happy for her but I think that may be part of why I have been so sad these last few days, much more emotional than usual. Cot is down, baby clothes and bottles and stuff packed away, now nanny gone. Slowly all signs of Kendra having been here are disappearing. Now all that is left are the memories, the photos and the heartache.

I was given a lovely memorial book with a couple of photos and lovely words in it and I plan on learning to do some scrapbooking so that I can fill it with all my best photos of Kendra. I dropped a few hints to my friends and received some lovely scrapbooking things for my birthday so now all I have to do is sort out the photos and find a spot to work. Of course I will have to do one for Branston as well so I think I will be busy for quite a while.

Numbers

Yesterday at exactly 3 seconds and 2 minutes past 1am, if you put time first you had interesting sequence of numbers - 01:02:03 04/05/06. This got me thinking about Kendra (most things do) and her birthdate. She was born at 1am (ok maybe not exactly but thereabouts) on 23 April 2005 which gives you 1:00 23/4/05, or 12345, another interesting sequence. She was also born on 23/4 and died on 24/3. And for good measure, last year my birthday was on 05/05/05. Interesting!!

Speaking of which, today was a strange day. My plan, 2 months ago, was to take Kendra to the therapist at the Downs Syndrome school. We had an appointment for 9am after which there was to be a talk for all mums whose children attended the home program by a specialist of some sort. I was going to take Kendra's nanny with. So I was planning to take the whole day off and just relax for the rest of my birthday. But now, it was just another day. I went to work as usual but could not help thinking about what my plans had been while driving to work. Not a good idea to drive and cry at the same time! Luckily I got there without incident. But otherwise, my husband and son spoilt me with gifts and a lovely home made card. We are going out tonight so hopefully that will cheer me up. Although the weather is really lousy - huge storm going on out there - maybe it would be better to stay at home in bed!

By the way - HAPPY 18th BIRTHDAY TO CARLA.

Happy birthday to Ryan

On a more cheerful note than recent posts I would like to wish Ryan, a young man with cerebral palsy, a very happy 21st birthday. Please go to the KIDS blog for some pics and more info.

When Sandy, Ryan's mom, came to deliver the invite to Ryan's birthday party to me she was very upset at being so happy when I was so sad. I just want to say to Sandy that you must not feel guilty at rejoicing while I am so sad. You must be proud of your family's achievements. I am happy for you and you deserve to be able to celebrate this occasion. You have done an excellent job raising Ryan to be the best that he can be and he is a remarkable young man. Well done to all of you.

1 month and counting

It has been exactly 1 month since our Kendra left us. I think I may need a sleeping tablet tonight. A month ago at this time I was sitting in the hospital holding my baby for the last time and wondering how I was going to tell her brother that his little sister was gone. Hard to believe how much one can go through in a month.

Yesterday was not too bad. We did some shopping, cleaned the house, went to the memorial park and had some friends over afterwards. I just want to say thank you to those who joined us at the park and to everyone who came around afterwards, even if only for a while. Your love and support mean a great deal.

We changed our room around last week and took down the cot. It was hard. I still have not packed away all her clothes and other things like medicines and nappies etc. I suppose I should sometime, maybe this weekend. I also have to sort out photos to print and enlarge. Can you believe I don't have any framed pictures of Kendra. I kept meaning to get around to it and never did. One thing I am glad that I did, and only a few weeks before she left us, was have Gathry take some nice black and white photos of Kendra and I. They are not digital but I will try and scan them in, there is one very nice one which I want to frame. I do not actually have many photos of her and I or of her and Gathry, more of her and Branston. Mostly we took pictures of her on her own, especially smiling ones.

Someone said something interesting to me the other day. If you lose a spouse you are a widow or widower. If you lose your parents you are an orphan. What do you call parents who lose a child or children?

I am rambling now. I have to get up early tomorrow so I should try and get some sleep.
I miss her so much.

Happy Birthday Sweet Kendra

Tomorrow, 23 April 2006, would have been Kendra's first birthday. As a matter of fact we are now only 4 hours away from the exact time she was born. How well I remember that Friday night when my waters broke. Gathry was not at home and I got the first signs at about 7pm while watching Fear Factor. I thought I was surely imagining it, I was not packed! It was 5 weeks too early! My replacement at work was only starting in 2 weeks time! But by about 9pm I knew for sure, phoned Gathry to get home quickly, packed a bag and by 2am the next morning Kendra was born. She had to immediately go into high care and since I had a caesarion section I only got to see her the next day when they organised a wheelchair to take me through to her. She looked very good for a baby born at 35 weeks.

The doctor told us that she would need an operation to correct the positioning of her anus but otherwise she was quite healthy. I had problems getting her to feed initially and then 2 days after we took her home we had to take her back to the hospital for a week with jaundice and a blood infection. Once she recovered from that she started sucking well. Then of course we discovered the Jacobsen Syndrome and our lives were changed. In the beginning it was extremely difficult to take in the fact that our child was different and nobody could tell us exactly how different she would be in future. She could have just needed a little bit of extra coaching and been mainstreamed or it may have meant a special school. Now we will never know.

It was an interesting year. We met some interesting people, made some new friends and I think changed our outlook on life quite a bit along the way. Between the operation, the eyepatches, the physio, the eating problems etc, she kept us quite busy. The last month has been quite a challenge and I have not done a post on the blog for quite a few days now as I have really not felt strong enough. There have been some really bad days and as quite a few people said, the worst was after the family had gone home and we tried to settle into some sort of a routine.

Tomorrow is not going to be quite as I had imagined it a month ago. We were going to have a big party, invite everyone, big cake, the usual exciting stuff around a first birthday. Now we will be taking flowers to the memorial park and will try not to think of what might have been. We will just try and think of the joy we had in the past year and how lucky we were to be parents and brother to such a lovely little girl.

Happy birthday my darling.

Durbanville Memorial Park

A number of people have asked us for some info about the memorial park where Kendra was laid to rest. Last time I went there I took some pictures and here are the nicest. The memorial park is a fairly new trend in places to lay your loved ones to rest. It replaces the traditional cemetery where the graves are all placed in a row with big headstones. As the name implies they are trying to create more of a park atmosphere. There are private standalone ash graves like Kendra's, as well as smaller ash graves in circles such as the picture above with all the roses. There is also an area for conventional graves but it is in the grass and no upright headstones are allowed, only plaques sunk into the grass. Only phase 1 has been completed so far. They are busy building a larger chapel (we could not fit all our guests in the existing 1 for Kendra's service, but we did have a large number of people attending), a crematorium and also a coffee shop. I do not know of another park like this in Cape Town, but I may be mistaken. I must say we have also received very good service from them. The phone number for the park is 021 975 5199.

And no, they did not pay me to advertise for them, but we felt that if we can help anyone out there with some advice then we would like to do that. When we were at the hospital, we were asked which funeral home we would like to use. Now what kind of a question is that for parents who have just lost their baby? Obviously we do not keep the names of funeral parlours handy! So they gave us the number of Avbob in Bellville. It was either there or in Maitland. So we thought that the one in Bellville would be nicer. Well, we were sadly mistaken. Firstly, if they had told us that the one in Bellville did not have a crematorium then we would probably have chosen the one in Maitland since she had to be sent there from Bellville anyway. Secondly, the one in Bellville was in a really crappy part of town. Going there was a horrible experience and I feel that if we had not received good advice from friends about deciding what we wanted up front, then they may have railroaded us into buying things we did not actually want. I think that the hospital did have some other options but they gave us the cheapest ones, and we were in no state to think clearly and they said they had to phone them to fetch her that evening.

I know it is not a nice thing to think about when you and your loved ones are alive and well, but I am thinking that it might be worth looking into these things beforehand in order to lessen the trauma if, heaven forbid, any of your family should pass away. Also it is quite expensive. We went for some slightly less expensive options and also had a lot of help from friends, from advice to catering to printing, so it could have cost us a lot more than it actually did.

Anyway this is all just my 2 cents worth but hopefully it will help someone out there.

To all parents

This poem was sent to me by Aunt Muriel. I cannot say for sure that it makes me feel any better at this moment, but it is very touching and sums up what a lot of people have been saying.

"I'll lend you for a little time a child of mine" He said
"For you to love the while she lives, and mourn for when she's dead.
It may be 6 or 7 years, or twenty-two or three,
But will you till I call her back, take care of her for Me:
She'll bring her charm to gladden you, and should her stay be brief,
You'll have her lovely memories as solace for your grief.

I cannot promise she will stay, since all from earth return.
But there are lessons taught down there, I want this child to learn.
I've looked the wide world over in my search for teachers true.
And from the throngs that crowd life's lanes, I have selected you.
Now will you give her all your love nor think the labour vain.
Nor hate Me when I come to call, to take her back again."

I fancied that I heard them say: "Dear Lord, Thy will be done.
For all the joy Thy child shall bring, the risk of grief we'll run.
We'll shelter her with tenderness, we'll love her while we may.
And for the happiness we've known, forever grateful stay:
But should the angels call for her much sooner than we planned,
We'll brave the bitter grief that comes and try to understand."

A verse by Edgar Guest (I used poetic license to change the gender of the child in the original verse).

We are trying very hard to understand and feel that she was not sent for her to learn from us but for us to learn from her. She made an impact on many people's lives, the most recent being a good friend of mine who (for reasons we will not go into here) was having problems coming to terms with and accepting her pregnancy. At the memorial service she says she had a total change of heart and feels completely different about her baby girl now.

Kendra has given so much to so many people and yet she never said a word. She had a lovely laugh, which usually led to a bout of hiccups, and hardly ever cried. She just charmed everyone she came into contact with.

And all of this leads me to a question put to me in a comment to a previous post.
Quote:
I'm having trouble with infertility - what do you think - better to have loved and lost or not to have experienced it at all. Sometimes I think of the pain a mother must go through when losing a child, and then can't help to think, maybe better not to have loved at all.
Unquote
I hope you don't mind me making your comment public, I just feel like maybe many others have thought the same way and are thinking of giving up on their quest for a child. This is only my opinion and I am speaking as one who has loved and lost. I cannot say that I can understand the pain that you are going through in your battle with infertility. I never had that problem so I can only speak about how I feel about what I am going through at the moment. Even now, when I am at my saddest and my chest physically aches from the heartache, I would do it all again.

These past 11 months have been truly wonderful. The joy you get from holding that little body and seeing the love and trust in those eyes, from being able to make her laugh, from the smile that appears on her face when she sees you looking at her. These are things that cannot be matched. And I have been blessed with that twice (my son is now 7 years old). And even though it was taken away from me so early the second time around, it is better to have loved and lost than to have missed out on that love. I'm sorry, I hope I have not made you feel bad about your situation, I just don't want you to give up hope. Having children is hard work, make no mistake, but it is definitely worth it. Good luck and please keep blogging, I would like to read more.

Donations

A few people have asked if we have any charities to which we would like money to be donated instead of sending flowers. At the time we could not really think of any. But there is a lady in my support group who has established a trust to raise money for a centre for children with disabilities. If anyone would like to donate money to this worthy cause then go to the KIDS blog. You can maybe put Kendra and your name in the beneficiary space so that she knows where it comes from. Unfortunately this can only be done locally (in SA), I am not sure how to go about it if anyone from another country wanted to donate money, maybe someone can help me out there.

We are also thinking of establishing a Kendra Meiring trust fund to be used for helping special needs families in various ways, not conflicting with Sheila's trust but to address different things. It will obviously take time to get this established which is why we cannot give you details just yet.

Other babies

I have held exactly 3 other babies since Kendra. It was not as hard as I thought it might be, perhaps because they were very unlike her.

First was darling Connor who is 2 years old but is also a 'Holland' baby like Kendra. He has Mytochondrial disorder which leaves him very much like a newborn. But he has a wonderful smile, a real little charmer. Holding him was very different to holding Kendra as he is much bigger but less advanced ito gross motor skills.

Then on Saturday I held little Stephanie, a 4 week old baby. She is obviously much smaller than Kendra and still very much a 'new' baby. Not so difficult.

Then yesterday I held little Peter, a 19 month old boy. First thing he did when I took him was put his arms around me, his head on my shoulder and give me some lovies. Almost like he could sense I needed it. He has never done that to me before. That gave me a bit of a moment and it was so lovely to just cuddle him for a bit. But it was still not like holding Kendra therefore was not as painful as I thought it might be. If I held Kendra like that I would probably have been bitten for my troubles!

Of course it doesn't matter how many babies I hold, none of them will ever be like Kendra. Some people might say I shouldn't try and hold my friend's babies as I am opening myself up to pain. Some might say it could be therapeutic. I don't know. I just don't want my friends to feel uncomfortable having their babies around me. Yes, sometimes it hurts a lot when they unwittingly make comments about being kept up all night or the like. But I also don't want them to start having to think twice about what they say to me in case it hurts. These are things I have to go through sooner or later.

How long....

How long will it be before I can go to sleep without crying?
Before I stop imagining that I can hear her waking up?
Before a door slams and I don't want to get up to check if it woke her?
Before I can close blinds and curtains in our bedroom noisily again?
Before we open the bathroom door at night and don't close it quickly again in case the light wakes her up?
Before the emptiness in our hearts and arms goes away?
Before the sadness becomes bearable?
How long?

Memorial

Flowers which we have received laid out at home for this picture.

Picture of Kendra in chapel.

Kendra's memorial service was beautiful. We were amazed by the number of people who attended. We estimated that there was more than 120 people there. We just want to say a big thank you to everyone who attended and to those who were unable to attend but whose thoughts were with us. The minister gave a lovely sermon and a friend sang 2 songs - The Rose and Candle in the wind - for us. We asked Janine to read our eulogy and she did a very good job. Neither of us would have been able to. Gathry's mother said a few words - thank you Mom, what you said meant a lot. Kendra's godmother also said a few words, thank you Yvonne. Then the family took Kendra's ashes and some of her favourite toys down to the ash grave and said our last goodbyes. Everyone else joined us and the minister said a prayer. Kendra's nanny then sang a final lullaby, which was very touching. Then everyone came and paid their respects to the family.

Words cannot express what it meant to have all the people from various walks of our lives there. I know that for some who have also experienced losses themselves in the past few years, it was extremely difficult and I really appreciate that you were able to be there. As you can see from the picture above, we have received an awesome amount of flowers. That picture does not even have everything as some were left at the memorial park and some which arrived early had already wilted. I also want to thank everyone who helped in any way. You all know who you are, it would be impossible to list everyone. You all have a special place in our hearts.

The service, as beautiful as it was, was obviously very difficult for us all. People have said that I was brave for not crying much but I think I was in a bit of a daze. I was just not able to cry. I think if I had started then that would have been the end of me. I hope I managed to speak to everyone there, if I did not get to you then I apologise. I have been keeping myself very busy with the family since then just to keep my mind occupied. Now that organising the service is out of the way, there will be more time to think and reflect on what we have lost. As many people have said to me that they don't know what to say to us, so it is difficult to express in mere words how we are feeling. Our little angel is gone. I know she is in a happier place and is still with us in spirit but there is a big hole in all of our hearts which will never go away.

Rest easy sweet Angel

First of all, I would like to say a BIG BIG thank you to everyone who has visited, phoned, sent an SMS, left a comment on the blog or just thought of us. Nothing can take the pain away but it really helps knowing that so many people out there are thinking of us, even people we don't know. I know some people find it hard, not knowing what to say to us, but believe me, even a hug or a squeeze of the hand helps. I cannot reply to all comments left to my previous post but know that we have read all of them and each one has touched our hearts.

We will be saying goodbye to our little angel on Thursday, although we know she will never be far from us. We have found a lovely memorial park in Durbanville. Here are the details.
Date: Thursday 30 March 2006
Time: 2:30pm
Where: Durbanville Memorial Park, Cnr Klipheuwel/Darwin Road, Durbanville.
(From Durban Road turn into Wellington Road towards Klipheuwel and drive for about 3km. Park is on the right, just past Corobrik)

Please wear happy colours. We will be celebrating her life and not mourning her passing so although many tears will be shed we would like it to be as bright a day as possible.

Goodbye sweet Holland

This is the most difficult post I have had to do. On Friday evening (24 March 2006) at 11 months and 1 day old, my little angel left this earth. Sweet Kendra had been ill since Tuesday and was in ICU. Her little heart could no longer take the strain and gave up the struggle on Friday evening. If you can measure a person's worth by how many tears have been shed for them then Kendra was worth a lot. I will give you more information when I am more up to it. We still have to finalise details of memorial service etc. Thank you to everyone who has been there for us in these last few days.

Time for an update

This is Kendra having her first taste of pawpaw. Don't think she liked it very much! We have not been very adventurous with our eating since then. It is difficult enough just getting her to eat her purity at mealtimes. Somedays she will eat (with some persuasion) and others she just refuses. She has also gone off her breakfast cereal. I have tried some different types of porridge but she is not terribly interested.

It has been a while since the last update, my apologies, things have been a bit hectic. Last week we went to see some professor at Panorama medi-clinic. The paediatrician got us to have Kendra's head x-rayed and said we should take the xrays to him. She was a bit concerned about the head shape and the fontanelles. The prof. had a look and he says everything is fine, there is nothing to worry about. She has slight indentations on the side of her head which he says may have something to do with the Ptosis (eye not opening). He says that we should speak to the neurologist next time we see her about maybe doing a brain scan just to make sure everything is ok there but he says that we don't have to rush into it.

Also took K to physio again last week. We are now concentrating on getting her fingers to open more and trying to flatten her hands and put some pressure on her arms as she is a little concerned about them. I need to find a mat like they use at physio as K rolls to the side much easier on the mat than on the mattress at home. I think they are quite expensive though. I must get a list of suppliers from Petra (physio).

This coming week we have an appointment to have K's eyes checked out again. We have been patching now for about 6 months and I think we will still have to for quite a while longer as the eyes are still not focussing. We will also be going to see someone at Chere Botha's school for the disabled. Hopefully she will be able to give us some guidelines on how to improve K's general development. The physio suggested that we see an OT (Occupational Therapist) as well so that appointment is for the following week. It just never ends!

Kendra is being much more responsive now. She takes more interest in what goes on around her and if you give her a rattle she really shakes it. She has had quite a nasty cold this past week and her nose has been very blocked up. Shame, even when feeling so miserable she is still such a sweetie! Full of smiles and still sleeping through (touch wood, she wasn't very happy this evening).

Measles and Milestones

Ten months old today!! Wow, time does fly. I was still telling people she's 9 months old and now its the end of April already. I took K for her measles injection on Monday. She was a real star. A bit of face pulling and almost crying but it was over in a wink. Her constipation has been causing her more problems than some silly little needle. Had to do some serious poop-pushing at the clinic ie. the sister helped me to help K to relieve herself a bit. I had to go and get some suppositories which helped a lot.

On Thursday last week I had to take her to the doctor as she had not drunk her milk for 2 days, though she was eating her solids and drinking tea. Yup, you guessed it, her tonsils have flared up again. More antibiotics which is what seems to have aggravated the constipation. Ok, enough about her toilet habits, I realise not everyone is as interested as me in how often K poops!!

I was looking at some developmental milestones in a book today and thought I would share how K fits in with them. These are just gross movement milestones. She has reached most of the 3 - 6 month milestones ie follows moving objects with eyes, brings both hands together, smiles in response to your smiles, lifts her head (still kinda wobbly though) and pushes herself up on her hands when on her tummy. She has not really achieved rolling over though or sitting without support. Lying on her back she does kick a lot and plays with her feet. Lately she rolls more to the side but never onto her tummy.

6 - 9 months: Baby should be able to hold head upright in sitting position(yes but still wobbly sometimes) and sit with minimal support(no, needs a fair amount of support but getting noticeably stronger).
Can keep head level when pulled to a sitting position (yes)
Stand on both feet with support (yes! she loves to stand and does so very well)
Feed herself with finger food (no, her mouth is quite sensitive and she is only just getting used to the 2nd level of Purity foods. The sister at the clinic says I need to try her on homemade and finger food so we will have to see what we can do this weekend - she has had cheese curls though)
Able to pass an object from one hand to the other (yes)
Recognises familiar voices and responds (yes, although sometimes she ignores you for a while, in her own world I think)

She has not reached any of the 9 - 12 month milestones yet. She has always had a problem with laughing in that she could not laugh without getting hiccups (apparently a form of reflux) but now she has figured out a laugh which just involves breathing out and is so adorable. She can go for much longer now without getting hiccups but usually they do eventually arrive. The trick is to stop making her laugh before the hiccups arrive! But it does not take much to make her laugh. Especially at her brother. Sometimes she just looks at him and laughs.

And lastly, she is still getting teeth nr 5 and 6 (on top) and all she wants to do is bite. I have to be really careful how I hold her or I end up with teeth marks on my arm or chest. And she is still too young to make her see that it is wrong. I try and give her something else to chew on but she likes material and tends to bite on her bibs and my clothing, which is how she ends up getting my skin between her teeth as well. All I can say is thank goodness I stopped breastfeeding!

And a picture...

Happy Valentine's day

Kendra seems to have gotten over her tonsillitis for the moment. Hopefully it will stay away. I have my doubts though. I think it is one of the things she is prone to and with her teething in full swing it will probably come back again. She wasn't very happy tonight but I think that was her tummy.

In terms of her development K is doing very well. When we went to the physio last week she was very happy with her improvement. Her legs especially have become much stronger. And if you hold her hands and pull her up, she first lifts her legs and then pulls from her side. She has also taken to straightening out so that she is standing when you do this. Still a little wobbly but standing nonetheless. We just have to work on getting her to flatten her feet as she likes to curl her toes inwards whenever anything touches under her feet. Another thing we have to work on is getting her to put weight on her arms. Like when she sits (with help) we have to put her arms to the front so that she can lean on them. Also have to get her to open her fingers when doing this but that is quite difficult as she prefers to clench her fists.

But she is holding things now and transferring from hand to hand which I am very pleased about. She will hold a rattle and move her arm around quite vigorously whenever she feels it in her hand. Knocking herself on the head a few times as well, so we give her the smaller rattles like the plastic keyrings, so she is less likely to knock herself out (kidding, just makes herself cry).

I am busy setting up a blog for the special needs group as well. We met last week and it was nice to see those that were there again after a long Christmas break. Every time I go I seem to learn something, whether it is some sort of treatment someone is using or the name of a good doctor or something. But I also leave feeling that there is so much I need to know and so much that these seasoned moms can teach me that 1 hour a month is just not enough. I am hoping that this special needs group blog will help with that as people can put all sorts of interesting things online. See link to this blog - KIDS(Kindness Inspired Dedicated Support).

Tonsils again!

Kendra has tonsillitis again. Took her to the doctor on Thursday with a bit of a temperature. She gave us a different antibiotic which Kendra seemed to like at first but lo and behold, after the second taste she decided she hates it. But I have tricked her, I now put about 50ml of her milk into a separate bottle and put the meds in that. Works like a bomb. This antibiotic upsets her tummy quite a bit so now she has the runs, which makes a bit of a change from constipation I suppose. She did not have a good night last night and is still not very happy today. A bit feverish. We tried to get a urine sample the other day so that we can test for bladder infection but those bags don't seem to work very well on her. No luck! Anyway we will see how she is later today. If she is still hot, I will have to contact the doctor again.

I have added a link to an article written by a mother of a Downs syndrome child called 'Welcome to Holland'. You must read it. Excellent way of looking at having a special needs child.

Happy 9 months

At last, some long awaited pics. I think they speak for themselves. Some of Kendra at her baptism, smiley Kendra and Kendra with Mommy and brother.

Kendra is 9 months old today. She is progressing well, just slowly. More of an update on her progress next time, just wanted to put photos on for now.

Dairy or soy?

Kendra has recovered well from her tonsillitis. Although getting the new antibiotics into her was a mission, we managed somehow. This week we took the docs advice and tried using the Nan formula again. No luck. Even on 1 bottle of Nan a day she started getting cramps (esp. in the evenings) again. The last 2 nights I have really struggled to get her to sleep. V miserable. Both of us. I think we are going to have to stick to the soy formula for now. It is quite a dilemma as she should not be dependent on laxatives but on the soy formula she needs them. So it is either a happy, constipated baby or an unhappy, regular baby. Any advice would be welcome.

Otherwise she is doing very well. Her interaction with her family is a joy to see esp. with her big boet (brother). Her face actually lights up when he comes into her line of vision or if she hears him. My favourite time with her is in the morning when she has just woken up. She lies in her cot quietly until one of us comes over to her and says good morning, then we get the biggest smile. Love it!!

I haven't been able to put any more pics on yet as our home PC is not yet fixed and I need to download from the camera. Soon though.

Happy New Year

Well, long time no blog! Our home computer is not working any more so I have not been able to do a post for a while. We had a great holiday, just far too short. Kendra travelled extremely well. Both her and Branston were very little trouble at all on both the trips there and back. The family was very happy to see Kendra and how she has progressed. I did not stress too much about her eating solids while on holiday and once we were back home I changed her breakfast cereal and she has started eating really nicely now. She is on breakfast and lunch and I will soon start her on supper as well.

I have been reading up on the 11q conferences in Europe and USA and they sound really good to go to. This year there is one in San Diego and I would love to go to that but am not sure that we will be able to, financially. It must be really nice to meet other families in the same boat.

Kendra has tonsillitis. She had a fever this morning and I took her to the doctor who said it is her tonsils. She hasn't needed to go to the paediatrician for ages and we went back to the doctor who looked after her while she was in hospital in her first month. It was nice for the Dr to see how much she has grown and she is very impressed with her progress. So she is on a stronger antibiotic than before as well as panado. I was given Ponstel to give her for fever but Kendra is not interested in it. When she sets her mind to not drinking something, you can stand on your head but she will not drink it.

She now weighs 7.9kg. We are still patching her eyes although I am very irritated that I can no longer find the eye patches which I was using. They are no longer importing them and I cannot find any others like them. Now I have to buy tape and cut them out myself, which does work out a lot cheaper so it is not all bad. I will put some more pics up soon. Must just get the PC working.