Thursday, 26 February 2015

Talks talks and decisions

So far this week was a week with many talks. On Monday we had a meeting with the rehabilitation doctors, Meg's psycholoog, social worker, nurse and us, parents. Talking about the last  9 (!) weeks . The time since Meg arrived here at Adelante. A lot of things happened, but also still a long way to go. Most probably Meg wil need an electrical wheelchair as she can only use her right arm. I hope we can test if Meg can handle driving it by herself. When we know  that for sure we can order one soon.

Such talks are a pull back to reality for me plus a "fight" against the prospections. No one can vieuw in future and ofcourse I know Meg wil never be the same as before, but I do keep my dream of her future as open as possible, not adding any label on her yet. I believe in the strength of visualisation and positive vibes and common sense too, but also Meg is showing huge will to survive and works very hard. I hope she wil surprise many. I humbly ask you all again to pray for full recovery.

On Tuesday in the morning I had a talk with the sales representer of the speaking computer. We adjusted the computer to Meg's possibilities at this moment. Typing is going faster as in the beginning :) In the afternoon the neurologist from the hospital came and checked Meg's reactions. He had an idea to treat her toe and leftarm with Botox to weaken her spasm, I don;t feel right about it. I think there are other options/ possibilities before doing such drastic thing  (again).  I cannot find any scientifical report/ research about the reactions/ longtime effect to botox with children under 18. If any one knows please let me know. I am happy to read. I want the best for Meg and I am not a scientific doctor or so. We raised our children without much medicins other as as much homeopathical  or giving the body time to heal. I know the whole world doesn't have time as economy is more important and everything need to go fast and faster, but some things....  with patience, love and therapy.... It is just I don't have experience with braindamage...

Wednesday I decided to visit a museum called: "de kantfabriek" a special international felt exposition was there and it made my heart beat faster again, got inspired!  And the hour drive from our place to get there, it was over faster as thought as I loved the drive, seeing more as only the distance between where I sleep and you are... . My mother was with you, Meg, when a podiatrist came for your toenail. You started crying when she came in, hope I didn't scare you, when I told you she was coming to place a special little wire brace on your nail... Grandma told me when she was working on it you undergo it calmly. Proud of you girl!

Thursday, (today) You were on attached on the "stand-table"  you are now at 70 degrees vertical. for 30-45 minutes way to go! By the way, you really grown huge Meg <3
I also heard next week you will be testing an electrical wheelchair. Jippy!  Will give you more autonomy about where you want to be in the building. Fingers crossed you still have insight in depth and heights and you know to avoid bumping into things or the smaller kids... but guess practice will tell.....  You wil get a wheelchair drivers licence :)

Now on my way again, Thursday isn't over yet... Hope to get many reactions about botox experiences.Thank you in advance.

Til next post!

Sunday, 22 February 2015

a Week revieuw

Last week it was a holiday week for schools. Some people were bussy with celebrating the catholic festivities called Carnaval. Others want to avoid all that and went off for a week wintersport vacation. For you Meg it was again a week with therapy everyday. Fysiotherapy for one hour, from 9-10 you have to move your legs, arms and body (everything with help) but I see progress :) You practice sitting straight on bed,legs hanging over the edge,  hard work for you, using many muscles which had vacation for a long time.

The advantage of being in a rehabilitation centre during the vacation is that there are lesser other children, so it is more calm and quiet. One eve the other 2 boys went to the cinema with a nurse and you stayed there... I descided to have a movie evening too :) Rolled your bed into the livingroom, placed you to one side of the bed and Janna jumped in your bed too. It was so good to see you two so close together again. I had to "serve"two princesses now, but that was fine with me. you wanted an apple. so I washed and cut one for you both. Janna was ofcourse faster in eating it. You meg were waiting to be fed, but Janna was just saying, you can pick a piece of apple yourself with your fork!.... hihih good practice in a playfull way. I don't know if you saw the whole movie... was it:  How to train your dragon? " I cannot remember anymore....

On Wednesday February 18th you got your first music therapy. After some time you relaxed more and were less shy. Karin had a microphone with her and invited you to sing along, It was nice to see your interaction. We didn't hear any sound from you, but I am sure it wil come. It needs time.

Thursday was a day with a visit to the hospital for new X-ray pictures. As we don't have a car for a wheelchair, the nurses organised a wheelchair taxi, We asked to be picked up at 10,30. Appointment was at 11.15. At 10, the taxi was already there.. you just finished your fysio.... Anyway we packed you in and in the taxi driving to the hospital, You were watching outside, enjoying seeing familiar surroundings. In the hospital we were way too early and we went to the restaurant, you noticed a seat infront of you, and for me,  you suddenly stretched/ lifted your leg to place it on the seat. You smiled because I was so amazed :)    when it was nearly time we went to the flowershop of Miranda and she had seen you while you were in the medium care so she now was very happy to see you again. the flowers I placed in your main livingroom were gone and I asked you what color of flowers do you want? Red you typed... Miranda made a bouquet of it and we left for your xray. There they made pictures to check if your fracture in your left arm was healed properly. when we got out I caleld the taxi to tell we were ready to go home.... first she said it wil take one hour.... oef, I said that is long, Meg normally needs to rest at 13 h. She asked for a moment and when she came back to her phone she said in 30 minutes there is a taxi. We felt lucky :)

The drive back to the rehabilitation centre was one with flowers, self chosed grapes, and a present for Jonas, whom was going to go home from Friday onwards. we arrived at 12 just in time for your lunch. You were laughing about the things Jonas was telling you. In the afternoon you were all playing your special card game..... Jonas, his brother Jente, the new boy Milan, the nurse A. and you. It was good for me to see you were having fun. A pity Jonas was allowed to go home... but he deserves that too... and he wil come by now and then.

Friday morning you were anxious waiting for very special visit to come. Jacqueline with a new golden retriever puppy,Beau, were going to come. She is going to train this sweet dog for visits in clinics and old peoples homes etc. You were the first one for the dog to visit and you loved it! you were brushing it and after awhile you said let's go outside.... The weather wasn't bright at all, windy and cold, but it didnot stop us. Janna, Charlotte her friend, Jente and Jonas and you in your wheelchairs We played a ball game, was it soccer or handball, hard to tell a mixture with together made rules, fun to watch and the small Beau was running everywhere....  a great moment <3
Friday eve it was calm there. Weekend started and that means kids whom can are staying over at home. You asked me when can I go home too? I couldn't answer, I explained I have to ask the doctor again. Wait and see.

This eve, Saturday 21th of February, while I was preparing you for sleeping one of the nurses said you reminded her you needed medicins while eating... I felt proud of you again dear Meg!! Again a small step forward as you remember you need medicins at a certain time.

Sunday, 15 February 2015

Reaction to a visit home

The night after you visited your home again you sweat a lot and was very restless. In the morning when I was there again, you wanted to have a bath after you were finished with breakfast. A tosti :)
There were many kids needing attention of the nurses, so when Janna came in she helped me getting you in bath... Although everything she wanted was watch a movie on my tablet....
So while you were in the tub, she was watching a movie, you also wanted to watch too.. hmm how to find a solution???  I used a bathpillow, turned it upside down placed it on the taps and there it was a nice movie place :). I don;t know how long you stayed in the water and Janna sitting aside, both watching the film... but Meg, you nearly fell asleep again... so after bath, they tried to give you some lunch but you were again too tired... you slept til 15.00h. You father and best friend Mae and her parents came.

During dinnertime you kept eating... In the morning you asked about the tube going inside your belly. In Dutch it is called a (P.E.G. sonde ) This tube is going directly into your stomach for liquid food, You got it since beginning of September 2014. And now you asked the nurses to get it out.... They answered it can only go out when you eat enough by yourself. I think you now knew what to do.... so proud of you!
In the evening and days after your visit home, we descided better no visit for you anymore for few upcoming days, as you were visuable tired of it and thinking about it.

From Wednesday onwards your liquid food during the day has stopped, only during the night you get 650ml and the rest of what you need is in your food and special drinks.
You tasted them all, with vanilla, strawberry, chocolat or banana flavour. I think chocolat is your favourite so far.... hope the feeding during the night also stops soon.... you like to eat and taste everything again. Cooked food, soups, cake, snickers, mars, twix, chips, candy , etc.

thursday morning after I Took Janna to school and delivering a gift I enjoyed this drive in the fogs very much. 

During last week I also got a talk with the doctor I hoped to take you to the Carnaval parade in our village on Monday, Incognito dressed up in a van along the route somewhere where not many people are but half way that week I realised that would be too much. The same the doctor adviced too. He said it is too much for Meg. A pity I know dear, Meg, you were so looking forward to it, but we wil find a movie from it on You Tube I am sure.
We were allowed to watch the school carnaval parade here in Houthem on Friday. When I cycled towards you, I heard Carnaval music and people getting ready. Out of the blue I felt so sad and had to cry... How life has changed so much. Thinking of 2 years ago, when you were the princess carnaval of our village, How would you react to see this parade? ?
At 10 the parade started first off the grounds of Adelante and we waited for it to come back again. Standing outside at a building where I can take you for shelter in case of panic or so....
You were already dressed up as a minion, with your special medaillel :)  the parade came, with small kids first and then the harmony group. I had to cry again a double feeling, happy to stil have you sitting in a wheelchair and all, but also regret as no jumping around for you and me this year.... I stil hope you wil one day be able to have fun again during Carnaval like you used. Fingers crossed.

Saturday eve you knew the new Prince, Princess and Adjudant plus their guard of eleven, were having a reception. It would have been your turn to help during that eve with storing away the presents the new princess was going to get. Janna was instead of you and we had a skype session, so you could see it all too. But I also saw frustration for the first time from you. You wanted to show them your medaille, but no one had time...  and light was bad so not much to see, only hear. you pointed out text to me, but were so fast i couldn't keep up with you.... sorry dear Meg, you had to start all over.. I ended the skype session and prepared you to go to sleep by listening to calm music and brushing your teeth etc. Sleep tight.

Today Sunday 15th, I heard you only slept from 02:00- 8:30 I bet thoughts kept you awake. It was very sunny weather and you wanted to go for a walk outside so i packed you up and rolled you outside. We went out twice today, Love seeing you enjoy being outside. We always end up in my appartment here in the ronald mc Donald house. You discovered I have sweets to eat, hihihi  Good to have you here around. I don;t have a moment rest, but  I was able to prepare some of my dinner  :)
Hope you wil sleep wel this night, Till tomorrow dear sweet Meg. Janna is celebrating carnaval with her cousins and nieces. I hope she wil enjoy it, she deserves it. <3 Have fun to you all whom celebrate carnaval or whom are on wintersport.  Enjoy life, I do so too different as before but that is fine too.

Tuesday, 10 February 2015

A first visit home part 2

Meg was very enthusiast going home. She told everyone who came to her about it, spelling it out on her letterboard or with her allora a speaking computer. But we had to keep it secret... I had promissed no other people No grandparents, no either one of my three sisters, no cousins or nephews, no friends. When I left Friday eve I said tomorrow I'll be here 15 minutes sooner as normal, 09:15 as I want you to be packed up for a ride.... Janna and me went to the appartment here in Houthem and we watched a movie and went to bed. I was awake every now and then, excited and afraid.... loads of questions and feeling of responsibility. What if  we don't do like I promissed? How wil you react?

Saturday February 7 th: I slept some, but was happy to be able to get up and have breakfast with Janna, Let's go !! While waiting for a nurse to open the door for us I took a deep breath, relax, Try not to mirror my feelings on Meg. When we came in the kitchen livingroom , Meg was eating a tosti made of a small bread :) Happy to see us as she knew what that meant, she kept an eye on the clock turning to it every now and then.... Yes nearly time Els would come....  Doorbell.... and who was there???

We packed you in warm in your wheelchair. My coat's back to the front, your own scarf and hat and your mascotte: your teddybear also had to go with you. Outside we watched how the bus opened its doors and you were rolled upon the electrical elevator. Inside your chair was clampsed to 4 sides and you also got a second seatbelt. Janna wanted to sit beside you, so I went to sit infront. During the ride I watched you now and then and you were smiling all the way. When we were closer to home you recognised more and more. Knowing you were nearly there.... Since June 6th you wasn't in Bunde, 7 months from home and that at your age ;-)

We stopped infront of the house and we took you out of the bus, Your father was awaiting us. We said goodbye til later to Els, and we went inside. Through our garage. Hearing the little bells when the door opened you knew yes that is the sound of home. I always knew when you were coming from school when I heard the bells Janna was talking and filming you, I took pictures and your father was pushing your wheelchair. We entered the house and were in the kitchen. I said let's try screaming of joy again!! You opened your mouth but again no sound but a big big smile... we drove you into the livingroom and you were looking at everything again, and pointing towards the pc.... No way we first celebrate with some cherrycake. so we sat at the table. you pointed out you wanted to be changed trousers. so back into the livingroom, lifted you onto the couch ( not good for our backs doing so often)  and changed your trousers.

I bet you overheard me telling the nurses I had an extra trouser along. I also bet you just did it on purpose so you could lay down on the couch  :) it is fine by me girl <3 then it was time for the cake. You ate half of it and then pointed again to the pc. You wanted to check your new facebook account and you wanted your cousin and grandfather to come. She helped you with fb. You chatted with Janna whom was 2 mtrs behind you with her laptop and some friends. Then it was time to go back home again. Time flew, but it was long enoug for you resting time.

The neigbours knew you were coming and were outside. You were smiling because of all the attention. It was already past 12:00h that was the moment you should have been back....  I drove off before as I had to pick up my keys. I had more plans for that Saturday.. I had to visit an open day from a school for Janna. no time for lunch.... finally you came back in the Valkhorst clinic and you were visuable tired (exhausted? ) I wanted to put you in bed but you had to get some lunch (which I heard you were too tired to eat),,, and I had to go. So we said goodbye in the doorway, Wishing you sweet dreams and a nice rest. In the afternoon when Janna and I came back to you, half hour later as normaal, giving you more rest. We all were very tired but played a cardgame. At 17:00h It is dinnertime and we have to leave you (rulles)  coming back at 18:30 after I had cooked dinner and sat down for a short time....  Janna was too tired and stayed in the appartment and I went alone to you we saw a movie (partly) and wrote everything down in your diary. Wishing you good night and sweet dreams. I got a huge hug and kiss from you <3

What a day it must have been for you! I just imagine myself not being home for 7 months and coming home for just 2 hours and having to go back again..... I know you like it in the Valkhorst clinic from Adelante, but still. When will you be allowed to be at home for a longer time????  Like past 7 months it is just live by the day and no longterm plans. You are the leading Lady. First see how you react to this visit and then we will know....

Tomorrow part 3 the after visit.

Monday, 9 February 2015

A first visit home part 1.

Dear Meg an Janna,
Last week I was thinking it was really going to be time to get you, Meg,  at home. I didn't mind if it was only for few hours, I just wanted you to see and experience yourself that it was still there, Other patients from Leijpark whom I still have contact with their mothers were already at home during the weekend, So why not you?  Your rehabilitation doctors  are very careful. They are afraid you would fall backwards in your upgoing curve. How wil you react? What does it do to you? Will you realise things which were common to do, are not able now? Like walking, like running the stairs into the garden,  Like using your left arm and hand, like talking. Even eating is not something which happens in a reflex, you need to be remembered you need to swallow while eating, otherwise you start couching.
I asked them and your "mentor "nurse, many times last few weeks when you were able to come home. I was asked questions like:
  • What do you do to keep family and friends away from home? As do not forget a visit is a HUGE impact for Meg, just being at home. Memories come back by the typical fragrances, sounds and things. My answer was we will keep it a secret she will be visiting, ofcourse people would see when a wheelchair bus is in the street......  And we wil pullout the doorbell, keep the gate closed,
  • Is it possible to enter the house with a wheelchair? Not that she is there and cannot enter the house... Through the gate around the back of the house that was not a problem. We had different people in the house before, so that was tested already. 
  • What do you need to take care of Meg? Medicins, personal care supplies? I said she does not get any medicins during the day now and her liquid food is attatched after lunch, so that was the time she needed to be back. I just wanted a special towel and pants, just in  case... 
  • What will you do if she needs to lay down for a change of her pants? We wil lift you up with the two of us and lay you down on the couch. do what we have to do and lift you back in the wheelchair again. 
  • How do you transport her? I was happy to say a good friend whom has a wheelchair bus offered us to drive Meg. So very sweet of her, Thanks Els! No need to ask for a wheelchair taxi with a stranger as driver.  
Thursday February 5th, I asked  again for taking you home this weekend in the morning and after your rest,  Meg,  I answered the question in the kitchenlivingroom, while you were sitting in the other livingroom, drawing. The answers I gave were "examened" by the doctors and when you were explaining your drawing to me with your lettercard, You drew our house, pointed out your window of your room and drew the four of us infront of the house, even the flowerbaskets we always have under the window . You stil remembered very well how it looked. 
The nurse came back telling us we got permission to visit home for 2 hours, we had to be back at 12 and no other people around... I had to promiss it! But I was happy to do so. Meg heard it too and if she was a light we would have been blind! She was shining with her whole being. Intens happy she was allowed to go home after all these months.

I had to warn her it was only a visit, we had to come back here in Adelante.  How cruel it would be letting her think she would go home for longer stay..... She understood as she hold her thumb up. I was sooo happy I could have been shouting it out of joy, something which I tried with Meg . Let's shout I said. let them hear how happy you are :) She opened her mouth, but no sound :(  but we just keep the faith it wil come back.... 

Tomorrow part 2 of the  visit. Need to go to Meg now

Sunday, 1 February 2015

A move

Dear Meg, yesterday they told us your room is needed upcoming week for new participants in the rehabilitation centre. You had a double room as you had therapy in your room and space needed with your wheelchair, etc. It was a luxary and we knew we had a chance you had to move over . So today was the day again I had to move all your clothings, teddybears, stuff we took along to stimulate you and pictures. It was your 6th move....  and it looks as if you and I are getting used to move, nothing is a guaranteed thing. We just undergo it and accept how the situation is. You showed your thumb up when I asked if you liked your new room.
You got a nice vieuw outside while laying in your bed now , in the other room the window was to far from your bed. Feels good  now. You pointed out the tv is closer to your bed :)  very important for a teenager , hihihi

Last week i was felting a cape/ vest for you, it isn;t finished yet, stil need to felt the arms. It felt good doing so, but it also made me realise how different our lives are now. stil need to figure out a new way of living.  I do mis being creativ, it was like breathing for me, created something every day. Nowadays I am just too tired or not inspired to make anything. We are not yet at the end of your rehabilitation. I cannot make plans for long term, just live day by day.

This weekend i also visited a new school for Janna. you heard us talking about it and spelled out with our lettercard: "Can I stil go to school? " I hope you can, For now first getting back your body functions like walking, eating and hopefully also talking, we wil see how far you wil come, it wil be o.k. where ever you reach a border. Next week we wil visit another school with Janna, hopefully that feels better a this one, but it wil be Janna's choice. She has to go there everyday, not us.

Anyway, upcoming week a week with again 2 to 3 therapy's on daily bases. Live goes on....