Did you know that those who appear to be really strong are those that are most sensitive? Did you know that those who spend all their time protecting others really need someone to protect them? Did you know that the three hardest things in life to say are: I love you, I am sorry and Please help me.
This quote rings so very true for me, I have been told so many times that I appear to be so strong but, believe me when I am alone in the evenings I cry and I worry and I am likely one of the most sensitive people you could even meet. I do try and spend all of my time protecting others sometimes forgetting about myself but, I do need someone to protect me.I know that is hard to believe from a big tough girl that likes to rough house with the boys. As a small child that person was my daddy and now that I am grown I look to my husband, the best man in the world (aside from my daddy) to protect me.
Last but not least I want to tell all of my friends and family...I LOVE YOU, you all mean so much to me and I wouldn't be half the woman I am today without each and every one of you. I AM SORRY, sorry for anything I have ever said or done to upset you. Sorry for any decisions I have ever made that have affected your life in a negative way and I am sorry for not returning phone calls, texts. emails and messages as soon as I should. And finally PLEASE HELP ME, please help me to be the best mom I can be for all of my children but most of all for Jordan since he will always be a child. Please help me to keep the strength when I am feeling weak and please help me to pick up the pieces of my life and carry on no matter what happens and how much I think I can't do it anymore.
To you all my love runs deep within my veins and I appreciate all you do for us as a family. In case you might of guessed tonight is one of those nights when I do not feel like the strong, tough, super-mom some of you think I am. I am Jordan's mom, I am Jordan's voice and I look forward to the future even though it scares the hell out of me! Thank you all for taking the time to read Jordan's blog, I know it is long, and I have been known to ramble on at times but I do appreciate it.
One last thing: I LOVE YOU, I AM SORRY and PLEASE HELP ME...don't ever be afraid to say it!
Sunday, June 26, 2011
Jordan’s Journey: September 2010- June 2011
Well a pretty uneventful winter and spring. Jordan had a mild cold and stomach flu during the winter months and he lost several pounds when sick. He has gained it back now. Jordan’s 11th Birthday was on January 19th, he of course was spoiled and had loads of fun. Jordan loves eating cake with his hands. The rest of the winter and spring was pretty calm for Jordan anyway.
Jordan started seeing a new paediatrician this year. So far so good...he is very nice and thorough. He believes Jordan may have Cerebral Palsy as well as all of his other neurological and health issues. I wonder how something like CP can go undiagnosed in a child that has seen as many doctors and specialists as Jordan has in his lifetime. This new paediatrician has set up the appts and paperwork for Jordan to finally be seen by genetics. We have asked and asked for Jordan to have genetic testing done so we know everything we are dealing with and we could possibly have some answers but, it never happened. There were always more pressing matters to deal with when it came to Jordan.
Today is June 26, 2011 and we have a very special appt tomorrow. We have Jordan’s genetics appt. We have waited 11 years for this appt and I am a little nervous, anxious and excited. I hope to get some answers tomorrow or in the near future anyway. I have said for 11yrs I can deal with anything as long as I can be prepared and research information. Living with a child every day not knowing what tomorrow will bring, not knowing when he could take a turn for the worse, not knowing his full medical diagnosis and not knowing when we may have to say goodbye to our son is so difficult. I don’t think anyone really understands. Even broad general answers will be better than what we have right now. I can not wait for tomorrow to be here and for whatever kind of answers they can give us. I am not holding my breath but I am sure not going to sleep tonight either.
Monday, January 3, 2011
Jordan's Journey Sept 2010
Well little Jordan had an exhausting month. He started back to school this month and he was so excited to see his school bus pull up in front of the house. He seemed to be doing a little better on the clonazepam and his seizures were down to 2-4 a day.
One saturday evening I was getting ready to give Jordan his bath and get him ready for bed so I asked Travis to sit with him and wait while I ran the bath. Travis came running into the bathroom a few minutes later and said I had better come look at Jordan. I asked him why, what was wrong and he said Jordan was shaking and choking. Jay and I rushed into the bedroom and Jordan was having a grand mal seizure. It was the scariest thing I have ever witnessed from our children. We quickly ran Jordan down the stairs and tried to see if we could get him to come out of the seizure. We laid him on his side and made sure he was not choking and talked to him to see if we could get a response. Jordan was not responding to us at all he continued to convulse and shake. We rushed him into the van and to the hospital. (No sense calling the ambulance since we only live minutes from the hospital we have found out we can get him there quicker)
When we arrived at the hospital they took Jordan in right away and the doctor came over to see him and asked how long he had been convulsing for. At that time it had been about 10 minutes. The nurse was cutting his clothes off as they gave him his first dose of ativan. Another nurse was trying to get an IV started and the doctor said they needed the IV to give him some more meds to stop the seizure. What was minutes seemed like hours and the doctor gave Jordan another dose of ativan through the IV. The seizure continued. They then decided to give him another dose of ativan rectally. By this time he had been having the grand mal seizure for 30-35 minutes. I asked the doctor what was wrong why wasn't the seizure stopping and he assured me they were doing everything they could. Jordan was given another dose of ativan through his IV and about 10 minutes later I told the doctor I knew that a grand mal seizure that lasts more than 5-7 minutes can cause a stroke and I felt he needed to do more to stop this. He pulled me aside and said they were doing all they could but they had to be sure not to give Jordan too much medicine or it could kill him. I was in tears and asking why this was happening. I don't think I have ever lost my cool in the ER before with dealing with doctors but I was very close. I was a mother in pain, hurting and feeling helpless. There was my little boy suffering and I felt like nobody was helping him and there was nothing I could do. After about 50 minutes of the seizure continuing they gave Jordan a dose of dilantin and within 2-3 minutes after that the seizure stopped. In total it was almost an hour, although it felt like hours and hours. Jordan was given 4 doses of ativan and 1 dose of dilantin in all.
I sat with Jordan holding him, stroking his hair and crying. I felt so helpless and wanted him to be ok. The doctor came back and asked me if I needed anything. I told him I needed answers. I explained everything to him from the last 10 years and told him I had been given nothing. We were told basic details and I was starting to get upset and felt like the doctors knew more than they were telling me. He read over Jordan's chart and told me that all he could say was that Jordan's disability was progressing and they knew it would get worse. So I guess we just have to wait and see what's next I said to the doctor and he nodded his head yes. Jordan slept and slept. He was exhausted and they had given him enough meds to make him sleep for hours. I was visited by a friend and she helped me to pass the time waiting for Jordan to wake up. We had several long talks with the doctor and found out he had worked with both my Aunt and my Uncle in different hospitals in Toronto. I asked him if Jordan was going to be admitted or sent home. He told me there was no reason to keep Jordan in the hospital he would just sleep on and off for a few days and they were sending us home with a follow up appt to see the Neurologist. We were sent home and Jordan slept for days. He was so tired and his body was exhausted. He had lost several pounds because he wasn't staying awake long enough to eat. Once back to normal we started feeding Jordan loads of carbs to try and pack on a few pounds. We went to the follow up appt with the Neurologist and Jordan's seizure meds were doubled and we were told we would be called with an appt in 4 months again but if we noticed Jordan's seizures increasing to call for an appt sooner.
It is now Jan 2011 and the beginning of a new year. I wish for health and happiness for Jordan and a quiet year for us all. Jordan had a great Christmas holiday. He was spoiled along with his 2 brothers and his sister. We bought a new LCD TV for Jordan for his bedroom since he loves his movies so much and it is his one true happy time.
I want to thank each and every family member and friend that has been there to help us through some tough times, I know the toughest are yet to come and I might look to some of you to help me through it again.I want to thank my awesome children and my wonderful husband for always standing by me and knowing I try my best to be a great wife and mom. I thank you Jay for taking my children and raising them as your own, for being there for me through it all and always being a shoulder to cry on. I thank you all of my friends and family for spending countless hours at the hospital with me, bringing me coffee or food to the hospital or ER, for listening to me cry and stress and even for being there for me when everything seems fine. Please remember I would pick you up if you fell down, I would hug you if you were sad, I would cry if you cried and I will continue to love each and every one of you in your own way. Jordan, me and our family could not have made it this far without the support of our great family and friends. I will not lie and I can say some days it seemed like I was alone in all of this and I felt like I could not handle anymore but I always seem to come through it with minimal damage. To date Jordan has spent over 2 years total in the hospital and he has gone through 11 surgeries. He is the strongest person I know, and his strength continues to grow. Thank you and I will add updates and more info as time goes on.
Meda :)
One saturday evening I was getting ready to give Jordan his bath and get him ready for bed so I asked Travis to sit with him and wait while I ran the bath. Travis came running into the bathroom a few minutes later and said I had better come look at Jordan. I asked him why, what was wrong and he said Jordan was shaking and choking. Jay and I rushed into the bedroom and Jordan was having a grand mal seizure. It was the scariest thing I have ever witnessed from our children. We quickly ran Jordan down the stairs and tried to see if we could get him to come out of the seizure. We laid him on his side and made sure he was not choking and talked to him to see if we could get a response. Jordan was not responding to us at all he continued to convulse and shake. We rushed him into the van and to the hospital. (No sense calling the ambulance since we only live minutes from the hospital we have found out we can get him there quicker)
When we arrived at the hospital they took Jordan in right away and the doctor came over to see him and asked how long he had been convulsing for. At that time it had been about 10 minutes. The nurse was cutting his clothes off as they gave him his first dose of ativan. Another nurse was trying to get an IV started and the doctor said they needed the IV to give him some more meds to stop the seizure. What was minutes seemed like hours and the doctor gave Jordan another dose of ativan through the IV. The seizure continued. They then decided to give him another dose of ativan rectally. By this time he had been having the grand mal seizure for 30-35 minutes. I asked the doctor what was wrong why wasn't the seizure stopping and he assured me they were doing everything they could. Jordan was given another dose of ativan through his IV and about 10 minutes later I told the doctor I knew that a grand mal seizure that lasts more than 5-7 minutes can cause a stroke and I felt he needed to do more to stop this. He pulled me aside and said they were doing all they could but they had to be sure not to give Jordan too much medicine or it could kill him. I was in tears and asking why this was happening. I don't think I have ever lost my cool in the ER before with dealing with doctors but I was very close. I was a mother in pain, hurting and feeling helpless. There was my little boy suffering and I felt like nobody was helping him and there was nothing I could do. After about 50 minutes of the seizure continuing they gave Jordan a dose of dilantin and within 2-3 minutes after that the seizure stopped. In total it was almost an hour, although it felt like hours and hours. Jordan was given 4 doses of ativan and 1 dose of dilantin in all.
I sat with Jordan holding him, stroking his hair and crying. I felt so helpless and wanted him to be ok. The doctor came back and asked me if I needed anything. I told him I needed answers. I explained everything to him from the last 10 years and told him I had been given nothing. We were told basic details and I was starting to get upset and felt like the doctors knew more than they were telling me. He read over Jordan's chart and told me that all he could say was that Jordan's disability was progressing and they knew it would get worse. So I guess we just have to wait and see what's next I said to the doctor and he nodded his head yes. Jordan slept and slept. He was exhausted and they had given him enough meds to make him sleep for hours. I was visited by a friend and she helped me to pass the time waiting for Jordan to wake up. We had several long talks with the doctor and found out he had worked with both my Aunt and my Uncle in different hospitals in Toronto. I asked him if Jordan was going to be admitted or sent home. He told me there was no reason to keep Jordan in the hospital he would just sleep on and off for a few days and they were sending us home with a follow up appt to see the Neurologist. We were sent home and Jordan slept for days. He was so tired and his body was exhausted. He had lost several pounds because he wasn't staying awake long enough to eat. Once back to normal we started feeding Jordan loads of carbs to try and pack on a few pounds. We went to the follow up appt with the Neurologist and Jordan's seizure meds were doubled and we were told we would be called with an appt in 4 months again but if we noticed Jordan's seizures increasing to call for an appt sooner.
It is now Jan 2011 and the beginning of a new year. I wish for health and happiness for Jordan and a quiet year for us all. Jordan had a great Christmas holiday. He was spoiled along with his 2 brothers and his sister. We bought a new LCD TV for Jordan for his bedroom since he loves his movies so much and it is his one true happy time.
I want to thank each and every family member and friend that has been there to help us through some tough times, I know the toughest are yet to come and I might look to some of you to help me through it again.I want to thank my awesome children and my wonderful husband for always standing by me and knowing I try my best to be a great wife and mom. I thank you Jay for taking my children and raising them as your own, for being there for me through it all and always being a shoulder to cry on. I thank you all of my friends and family for spending countless hours at the hospital with me, bringing me coffee or food to the hospital or ER, for listening to me cry and stress and even for being there for me when everything seems fine. Please remember I would pick you up if you fell down, I would hug you if you were sad, I would cry if you cried and I will continue to love each and every one of you in your own way. Jordan, me and our family could not have made it this far without the support of our great family and friends. I will not lie and I can say some days it seemed like I was alone in all of this and I felt like I could not handle anymore but I always seem to come through it with minimal damage. To date Jordan has spent over 2 years total in the hospital and he has gone through 11 surgeries. He is the strongest person I know, and his strength continues to grow. Thank you and I will add updates and more info as time goes on.
Meda :)
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