My Journal

June 9, 2001

I started working on this web site. I'm not sure how long it will take me but I hope that once it's done people will learn and have a better understanding of families with special needs. My only regret is that I didn't start this web site sooner, as my kids have been through so much medically in the last two years that it's impossible to record it all here. If any of this relates to you please don't hesitate to contact me & I will share information.

June 19, 2001

We got a letter today informing us that Shriner's Hospital for Children in Minneapolis has accepted to see Jordan. We go with him for an assessment on Aug. 30/01. We are still waiting for a reply regarding Jeremy. We applied to get second opinions through the Shriner's Hospital in April and it was nice to hear they will see us.
I worked a lot on the website, about 75% done, hope to have it completed in another couple of weeks.

June 20, 2001

Jeremy had minor surgery this morning, tubes were put in his ears to drain the fluid so he will be able to hear better. He did very well and an hour after the surgery was over he was back to his happy self! Since he couldn't hear well with the fluid there I'm hoping that he will now start talking.

June 21, 2001

Got a letter saying that Jeremy has also been accepted to be seen at the Shriner's Hospital in Minneapolis on Aug. 30th. As parents in this situation, we just want to make sure that everything that can be done is being done for our children. We are looking forward to this assessment and hope to learn more about both of our son's conditions.

June 22, 2001

Jordan & Jeremy had their first speech therapy session today in our home with the speech pathologist. Jordan does not make any constanent sounds and Jeremy says baba, mama, dada and babbles. We're trying to get the boys to babble more while playing and actually Jeremy said his first word today "Baby", it was very exciting!! We are working on two sign language words for Jordan ("more" & "all done") so that he will eventually be able to communicate until his speech comes into the picture.

July 5, 2001

Jeremy walked today all by himself for the very first time!!! It was so exciting and overwhelming, brought tears to my eyes! We have waited for this moment for such a long time! I'll never forget the huge smile on his face while he was walking!

July 16, 2001

Roger, Jeremy & I attended our first War Amps CHAMP Seminar on the weekend in Saskatoon. Champs from Western Canada meet at the hotel and we had a chance to talk to other families in similar circumstances and we sure learned a lot both from them and from the seminars that were offered. We even had some time to take in the pool and water slides and Jeremy really liked that! This seminar is held every summer and we are looking forward to the one next year already!! The War Amps is a wonderful organization and has helped us a lot dealing with Jeremy's amputation.

July 25, 2001

I am finally finished the website - yeah!! It's been awhile but I feel great that it is done. I hope that all of you who view it enjoy it and let me know what you think on the message board.

Jeremy is walking more and more everyday!!! My heart is so warm to see him walking!!

August 1, 2001

Thanks to all of you who have viewed and offered such wonderful feedback about our website. I look forward to hearing from more people in the future and please pass our site on to others you think might be interested in it.

Jeremy is walking up a storm now and I find it still so incredible to watch him walk. For Jeremy and all that he's been through, it really is amazing! For a long time I thought "will he ever walk?". It sure is nice to go out now knowing that we can let him walk around instead of always holding him - at 25 lbs. he's not exactly "light" anymore! Jeremy is also talking a lot more now, he says about 20 words and is trying new ones everyday so that is very exciting as well!

Jordan is as sweet as ever and trying his hardest to move around and do things. He gets frustrated but keeps on trying and that is such a great quality in him! One of the hardest things about being a parent of a special needs child is watching them try and struggle so hard to do something and sitting back and letting them figure it out for themselves because they have to learn on their own sometimes.

We are looking forward to our trip to the Shriner's Hospital in Minneapolis, we leave on Aug. 29th and we are anxious to hear about what they have to say about our son's conditions. I'll let you know once we return.

Sept. 19, 2001

Well, it's been awhile, thought I'd better just sit down & tell you all about our trip to the Shriner's Hospital for Children in Minneapolis. All the staff at the hospital were very nice & were able to answer all of our questions, which was really nice.

Jordan (with CP) will now be going to the Shriner's Hospital in Minneapolis for all medical appointments and treatments.We found out a lot more information about what can be done to help him physically & I go back with him in the beginning of Nov./01 for a Botox injection treatment.

As for Jeremy, we got a second opinion from a surgeon there as to whether or not more surgery needs to be done on his stump to correct the deformity that is still there. We were told "no for now", which is what we wanted to hear.

Anyways, we feel like our children (especially in Jordan's case), will be well taken care of and medical procedures will be done at the appropriate time without us having to "worry" about when that time is, as they will let us know (unfortunately that is not always the case here).

Hope everyone had a great summer & enjoy the fall because soon we will be covered in the "white blanket".

November 19, 2001

Jordan & I flew to Shriner's Hospital in Minneapolis on Nov. 3 to the 6th. Jordan rec'd a botox injection to "relax" his adductor muscles (inner thigh muscles). It is quite a simple procedure and he did very well. The flight on the way home....well....not so well!!! Unfortunately, it was nap time and an airplane seat was not a good bed!!! Mom was very tired by the time we came home, carrying a 26 lb. child everywhere is not easy!

Jordan's adductor muscles are very loose and the daily stretching that we do is so much easier. With his physiotherapists we are working on standing and strengthening some of his other leg muscles. Botox is a temporary relaxing of the muscles that last 3-6 months so we have to take advantage of the "window" over these next few months. Jordan seems more comfortable because his legs are not so stiff, just imagine yourself with very, very stiff legs sitting with them out in front of you - not very comfortable. Now with the botox, that position is much easier for him.

I returned to Shriner's Hospital in February with Jordan for a check-up.