First of all we have moved! It has been an exceptionally rough time but we have moved. The older girls have a school bus within walking distance and I drop the main man and Isabelle off at school. Im finding the drive really hard. I have no idea why but driving makes me so anxious. The first thing I think when I open my eyes is "oh no I need to drive to and from school" I know I will get used to it in time and its so worth it. I cant even imagine having to put my main man in a taxi again!
I had plans to close down this blog. I wont go into details but I was very upset to learn that it had been used for something other than what I intended it for. I know I have written it for anyone to read and I love that people have read it, at times though I have been really honest about feelings and worries so it hurt me a lot. Nothing serious so dont worry!
Anyhooo the reason I wrote it was to reach out to anybody that might have a child diagnosed with MM21. When Jack was first diagnosed there were only about 3 things I could find on google so I wanted to make sure that if anyone else had to look it up they could find me. This very thing happened last year. A wonderful lady contacted me to say she had read my blog. She was desperate. Her daughter had been diagnosed and the doctors were giving her no hope for the future as they had never seen it before. I emailed her back and told her about my guy and she shared pictures and stories of her incredibly beautiful little miracle. She and Jack look so alike! I put her in touch with the group I had found of other children and she joined our family.
This week is rare chromsome disorder week and I got this post and message from her. I was and am so touched by it. This is the exact reason that I started this and the very reason I will continue to do so. She has allowed me to share it with you:
As this week is a week of chromosome disorder awareness week i would like to thank every one in this wonderful group for being a great support for me and my baby girl though our journey!
I hab good and bad days, tears and fears and i always knew that parents and grandparents of this incredible family will help me, support me and share more information than any other doctor!
Thank you all sooo much and God bless all your families and sweet little cuties!!!
Thanks for letting me to be the part of your family!
A special thanks to Shell Paton, for responding to my first letter seeking for help and for inviting me to this group!
I am proud to be one of you and can't stop admiring how great, loving, caring and very special parents you all are!
Shell,it meant so much for me when i got your answer! I think i will never forget the happiness when i saw your answer and saw the cutest little boy Jack! Jack gave me hope that everything is possible and doctors may be wrong! And then one after another i found support from every member of this group, i saw wonderful kids who proved the doctors all over the world wrong and showed what is real fighter means!!!
Your support meant and means sooo much to me! I can't even explain how lost i were before i saw Jack, before i got your answer and before i joined to the group! If not your blog i don't even know where i would be now....
I really am truly moved by this.
Ok on to the main guy. His dad has had to take him to his last couple of appointments. Jack saw his haematologist and they have taken a lot of blood to run some platelet tests. We still dont have the results back from this yet but they do take a while. His bruising has been up and down. He went through a spell of having bruises right in the middle of his chest which if he didnt have such wonderful teachers at school I would be worried people would think I was hurting him!
Jack has also had a paediatric check up. He saw a new consultant this time who was really interested in him. He has referred us for another EEG now that Jack is older, there are more in depth testing they can do. His 'spacing out' hasnt been quite as bad but one morning I asked him to take his breakfast bowl to the kitchen and he stood and just poured all the left over milk down his front. It was really strange!
We have some pots for some more detailed stool sampling (sorry hope you arent eating ;) )
The doc wants to see him again in 6 months which is great. I feel like we are getting somewhere.
I had a meeting yesterday with Jacks speech therapist. His language is really coming on but his forming of words still isnt quite right. She wonders whether he has something structurally wrong inside his nose as he does sound very nasal when talking. When he was a newborn and he was sick after a feed it would shoot down his nose. It was like it had jet power behind it, quite the party trick! This makes me think that they may be on to something so she has referred us to the cleft team at the dental hospital for them to have a good look. Just another little quirk to my most favourite boy in all the land!
I will update as soon as we have results or have been to other appointments. Will leave you with a couple of pics :)
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