Learning Disability

Today I got to talk with the Doctor in Toronto that accessed Anniek for a Learning Disability.  They did the testing in Toronto last month and today was the call to basically get information that is going to be on the report.  It turns out that Anniek has a Communication Based Learning Disability.  I am not too sure what to make of this...yes it does answer some questions for me which I really like, but it doesn't explain others.  The Doctor said that she needs an EA at the school and the school basically told me NO and the Doctor that it is not going to happen (with other wording).  The Doctor also said that she needs an IPAD at the school.  I can't afford one let alone all the apps that she wants for it.  The school said that they think the IPAD would just be a distraction and they don't want that to happen.  I can understand it being a bit of a distraction for the first little bit, but after the novelty wears off about it, then I can see it REALLY benefiting Anniek, she LOVES playing on apps on my phone and being on the computer so I think that she could really learn from it and it will help her explain stuff that she can't explain to us using her words.  So I am going to look into ways to get an IPAD for her and hopefully I will be able to find something.

Bye-Bye PICC Line

Anniek got her PICC line got taken out today!!! The Nurse Practitioner at the Cardiologist told Anniek it would not hurt to have the PICC line taken out, but Anniek being Anniek cried in preparation for it to be taken out.  Suddenly while it was being taken out she stopped crying and said "ohhh this does not hurt" and the Nurse Practicioner said 'well I told you it wouldn't hurt" so when we got ready to leave Anniek gave the nurse practitioner an big hug and kiss before because it did not hurt.  I am so glad that we have the PICC line gone, now she can go on the climbers at recess and she can participate in gym class as the school was so worried about the PICC line they wouldn't let her do that stuff.

Blood Work

Miss A had blood work yesterday and again today.  After her blood work today she got to go over to the Blood Donor Clinic and watch her Grandfather donate Plasma (plasma is a part of your blood).  With plasma instead of waiting 52 days between donations you only have to wait 1 weeks between each donation to donate.  Anniek was very interested in the machines and watching the blood spin in the machine and asking lots of questions.  I brought her over to the snack table and she was looking at the pictures on the wall and she asked why her Grandfather was not on the wall.  I explained to her that he should be on the wall but he does not really like getting his picture taken, but if she asked him he would most likely do it.  So Anniek went and asked him to have his picture done and he said only if she was in it.  The nurses jumped at the chance to get his picture up on the wall and Anniek was standing beside him holding the sign with his last milestone donation which is 600!!!  Only Anniek would be able to convince him to do that.  The people at the blood clinic also gave her a copy of the picture.  Next week we will know if we can have the PICC line taken out.

Appointments

This morning we got up early to go to Anniek's first appointment, Rheumatology.  The doctor looked at her joints and said that her right wrist is still a bit swollen, she did range of motion of her joints and Anniek had no pain with the range of motion.  She also watched Anniek walk and run.  Anniek is still toe walking and they are unsure why she is still toe walking.  They also said that they want blood work.  They said that they were going to poke her for blood work and said it in front of Anniek so of course she is in tears.  I said that she has a PICC line, they can use that, eventually after discussing it they decided to wait until after Cardiology to get the blood work in case she needed blood work from them.  When we finish it was 4 HOURS before her next appointment, so I decided we may as well go home as there is nothing to do around the hospital for 4 hours. 
We went back to the hospital after lunch for Anniek's cardiology appointment.  They just did weight and a ECHO.  We did not even get to see the Cardiologist today.  She will look over the ECHO later and let me know if there are any concerns (I like it better knowing that day).  I also talked to the nurse practitioner there and told them about this mornings appointments and them wanting to poke Anniek even though she has the PICC line and she said that they should do it through the PICC line and if they won't do it through the PICC line to have them page her and she will tell them to do it through the PICC.  She wants blood tests done next week...twice...after the antibiotics are done before they decide.  So we went back and got the blood work done, they did it through the PICC no problem. 
We also made another Rheumatology appointment for January and if she is still toe walking they will look into it more, and Cardiology is not until February again, unless they saw something on the ECHO which I have not heard about yet, but will post if its not good news. 
Now we just have to wait until next week to see what the 2 blood tests say before they pull the PICC line.

Big Day Tomorrow

Tomorrow we go back to the hospital for a check up with rheumatology to check how Anniek's joints are doing.  She is still limping off and on so it will be interesting to see what they have to say about that.
We will also be seeing cardiology to check on her valves and we are hoping that they are unchanged, if they have changed it could mean that the infection did spread to her heart and it just did not show yet in emerge when they did the ECHO which would not be very good as she already does not have good valves.
She will also most likely be getting blood work tomorrow so that they can do another culture and make sure the infection is gone.  The results will tell us how much longer she will need the IV antibiotics. 
Hoping for lots of good news tomorrow!

The Drawing Hope Project

So I heard about The Drawing Hope Project  it is to support the incredible story of 30 young children who were born or are living with health conditions, their imaginations, their hope and the belief that anything is possible. Told through magical photographs inspired by and based on their own drawings, it will come together in a candid, real-life storybook to offer hope to others who are fighting, surviving, or just looking for some heart-warming inspiration. They are all full of hope.
 In the summer and Anniek drew a photo for The Drawing Hope Project and I submitted it.  It is of her as the Hero of the Sand Castle.  Today the photographer came out and took pictures of Anniek to make her into a Hero of her own Sand Castle.  He sent me an out take from the photo shoot...and this is it...

Home Sweet Home

Finally get to sleep in my OWN BED tonight...instead of one of the hospital chairs that pull out into a couch.
They had the PICC line scheduled to be done at 2:00pm but when the nurse came in the morning she said that they were going to do it early.  About half an hour later she came in and said that they are doing it at this time.  My sister who arrived in town last night was supposed to see Anniek before she went in so I had to call her and tell her to come ASAP as she is going down a lot earlier then thought to get her PICC line done.  Anniek was in the stretcher ready to be moved when my sister came in...Anniek told them we could not leave until her Auntie got there.  
So she had her procedure done at 10:00am and was awake and back in her room by 10:30am.  We thought that we would be spending the night in the hospital as we did not think that they were able to get a home nurse in for tonight, but they were able to get a nurse in for the night and Anniek was able to go home after her 4:00pm dose of antibiotics. 
So now we are waiting for the home nurse to come so that we can get the PICC line and IV pump set up for her next dose of antibiotics.  They were supposed to be here by now, but they are not here and the nurse is calling them to get it delivered quickly. 
Then its time for bed for us for hopefully a good nights sleep.

Finally A Diagnosis

Well we have seen a TON of specialists and they have the blood cultures back now so they have an official diagnosis for Anniek now.  She has Post Strep Reactive Arthritis.  Basically the Strep throat spread to her blood and her joints.  So she will need IV antibiotics for 4-6 weeks.  The physio therapist got her walking with a walker and  tonight she finally decided to try walking without the walker for the first time.  So hopefully tomorrow the physio therapist will approve her not having a walker any more.  She is a lot more herself and has more energy now. 
I asked them to put a PICC line in so that she is able to come home.  A PICC line (Peripherally Inserted Central Catheter) is a form of IV access that can be used for prolonged periods of time.  Anniek had one when she was a baby and in the hospital for 2 months, so I knew that you could come home with a PICC line.  They said that they thought that would be a good idea and put in a request to have a PICC line put in. 
They also changed her 2 antibiotics to 1 antibiotic that the culture was sensitive to.

We Have A Room

We have a room...we did not get it until oh about 3 am, then they got her nice and settled and what does the doctor do...order blood work. She got a semi-private all to herself as she is on precautions until they figure out what is wrong with her. It's a weekend so there is not really anything that they are doing anything other then what needs to be done. They asked me if I am willing to let her have a blood transfusion and I was like of course...and then told me that they might have to give her a transfusion as her platelets are low...if they drop any lower on the next blood test they will have to give her one. They also had to stop giving her Advil because of the low platelets so basically right now its a wait and see and no news is good news for the weekend.

And We're Off...To Emerge

So by this morning she was not able to move either her legs or her arms without EXTREME pain...you could not touch her without her being in pain...she just wanted to lay in bed and not do anything, she wet herself because it hurt too much to get up when she got up...also had a fever. I convinced her to let me carry her out out of the room after lunch and watch a movie and as soon as the movie was done she asked to be carried back to her bed...that is when I decided that we should get ready to stay because I knew she was not going to be better...so while she had a nap I got stuff ready to bring with me to emerge and called my Mom and asked her to pick us up before 24 hours so it was still in the afternoon...before the "busy time". We got there I brought her into triage and they had her as urgent and when they took her pulse they crossed that off and marked her as emergent and as soon as we were done in registration they took us into a bed. We saw the REAL doctor within 30 minutes...sometimes usually we have to wait longer then that for a resident...let alone the REAL doctor!!! The doctor ordered a chest x-ray and a CBC and IV start. So the chest x-ray came back a little fluid on the lungs, remember this was clear like 48 hours ago. The CBC came back that her potassium was low, her sodium is low and that there was some sort of infection in her blood cells...they are doing a culture so they need more blood (another poke for a blood test) which again takes 28 hours and they are definably are keeping her...and they are starting her on 2 broad spectrum antibiotics, they ordered a EKG to be done which and they called the on call cardiologist as they want to make sure the infection is not in her heart too...so right now we are waiting for the cardiologist to show up...and a room upstairs so we can get some sleep.

Back to the Doctors

Anniek's fever was down until yesterday afternoon when she suddenly got the shakes again and I felt her and gave her a dose of Tylenol. So her fevers came back not even 24 hours after we left emerge. This morning I had an appointment so my Dad watched Anniek. When she got up she was limping and saying her leg hurt, but I had to leave before the doctors office started answering the phones so my Dad called the doctor and made an appointment for Anniek in the afternoon and asked my Mom if she could drive me. So by the time the appointment came in the late afternoon Anniek could barely walk and did not like putting weight on legs and it hurt to carry her. The doctor looked at her and said that the throat swabs came back and she has strep throat and she just could have a complicated case of strep throat. She gave me the antibiotic prescription and told me to give her all 3 doses tonight and if she is not better in 24 hours to bring her in. I had the prescription faxed to the pharmacy so it could just be picked up and called on the way home to make sure that they got it and it would be ready. She has had 2 so far and she is not better...3 tomorrow before 24 hours up I feel in my gut she won't be but hope she is better by the time it reaches 24 hours.

Off to Emerge...and Back Again

So the Family Doctor called to see how Anniek is and if her fevers are gone down and I said no...she said if they are still going on at 6 to bring her in to the after hours clinic that they have...so I brought her in and the doctor their said to bring her to Emerge. She called and let them know that we were coming and sent a letter with me. Emerge had us wait over an HOUR so I was not happy about that...they gave her Tylenol when we got there...checked her temperature again and it was HIGHER then it was when we got there...so they had to give her something else. The student Doctor was asking his classmate what they 4 defects are for TOF right outside the curtain so after a few guesses I said you can just ask the parent TOF is made up of these CHDs. They did a chest x-ray (clear) and a urine culture (normal) and after she was finally able to get enough down to make them happy, after they gave her something to help her with the gaggyness she was having and her temperature was under control they sent her home...at 3 am.

Fevers and Doctors

Well...I said in the last post about it being a while because not much has happened but now she is sick. First off on yesterday Anniek complained of a sore throat before school and I said that she can still go to school with a sore throat but if she starts feeling worse I will pick her up. I get a call from the After School Program about 10 minutes after they get her...she is asleep and feels warm so can I come pick her up...I picked her up brought her home and I have no Tylenol so I called to get some delivered. I look in her backpack and read her communication bag...the teacher wrote a note about how Anniek is not herself...not sure WHY they did not call me to pick her up from school. I get the Tylenol delivery and give her some she goes to sleep...in my bed cuz she is sick. I go to bed later and wake up to her shaking from the chills, I check her temp 104.7...WOW!!! I give her more Tylenol and it came down so back to bed morning comes and it is up again so I call the Family Doctor and they said to come right in and they did a Strep Throat swab that you get the results right away (they were negative) and one that the cultures take 48 hours to come back. So waiting for the results back and hoping that her fevers get better.

Cardiology Appointment

Oh wow, it has been a while since I updated this...but its good in a way that I have not needed to up date it which can be a good thing as nothing has really happened. She had her cardiology appointment today and it went well. She was great for all the tests and I told them about Anniek complaining about her heart racing so they said that they would do a Holter Monitor...after she is in school so that she is busy while it is being done. Her valves and everything look good...so they will see her again in 6 months.

Disney On Ice

Anniek won 2 tickets to go see Disney On Ice through the library here in the city. She doesn't know that she is going yet as it is not until next month. We read almost 100 books as it is 1 ticket per book and she loves it when we read to her.
Anniek has her cardio appointment in March. I am starting to get a little nervous about it because this is the first "real" appointment since she had the stent put in. She had an appointment a few weeks after the stent was put in to check on it and it was the size it was supposed to be, but she has grown quite a bit since she had the stent put in and I know that they can only go in once, maybe twice if they are lucky and make the stent bigger before she will need to have open heart surgery again...which I hope will not be for a long time.
At school we got her a wiggle cushion as she has having difficulties with sitting still and at her desk when it was time to do work. We discussed with the teacher what might help and decided to give the wiggle cushion a try and asked the Doctor in Toronto for a note saying that she needs the wiggle cushion for the school...she now has one for both at school and at home for during dinner...which has helped her stay at the table longer. She is also eating enough that we were able to cut out 1 can of formula per day which is awesome!!! So she doesn't need to drink any at lunch hour...she can just eat her lunch that gets sent to school with her.