Wednesday, October 5, 2011 6:50 AM, MST
written by Kassie Bonura
Yesterday was the start of our monthly blood draws for Haley. Last month we were able to use the test they did while we were in the hospital last.She has to get her liver tested every month to check for liver damage from the meds. Geez this is all so strange to me. Before all of this Haley barely took tylenol! Now she is taking meds 3 times aday. One which requires me not to touch it at all because of the chance of severe birth defects it causes....just so you dont get any ideas, we have absolutely no plans of adding any children to the family.
So back to the blood, we made a worthless appointment for 2:15, long story short, this lab only does drug screenings from 10 am to 3pm. But they dont tell you that. so we sat very well for 40 minutes before I realized what was happening. We got called back exactly at 3. When we got into the room I reminded Haley once again of our rule, we ask nicely once and then depending on her decision I will hold her down. The nurses, I dont think they are but thats what im gonna call them, were so nice and I probably seemed like a rough mom, but we've gone through this way too many times. Haley sat on my lap yelling "hold on hold on wait!" So the nurses waited and kept telling her ok we will wait. I did the parent whisper reminding her one last time of the rule. So then came the horrible mom, I looked at the nurse and said if you wait we will be here all day. So lets just do it. I sat haley in my lap, my legs wrapped around hers, one arm I held while holding her torso, my other arm was around her head... hugging it... lovingly. Another nurse came in to hold her arm straight, Haley screaming and crying. As a mom going through this you would think it would be a breeze by now, its not, it is a bit easier then the first couple times, but I still have to fight back tears. As with every other time, the second the needle goes in, she stops and all is well. She is such a nerd! Oh how I love my nerdy haley!
On our way out a young man, by young I mean 17 maybe, stopped Haley and told her she did such a good job. Tears in my eyes once again! Boys like that are just the best. The world would be a better place with more people like him. Haley will remember him and will want to talk about that everytime we go there.
Thanks so much to all of you who donated to the Hopewalk! We are looking forward to the walk and to see how much $ and awareness we can raise for Hopekids as a team!!!!!! Thanks again.
So back to the blood, we made a worthless appointment for 2:15, long story short, this lab only does drug screenings from 10 am to 3pm. But they dont tell you that. so we sat very well for 40 minutes before I realized what was happening. We got called back exactly at 3. When we got into the room I reminded Haley once again of our rule, we ask nicely once and then depending on her decision I will hold her down. The nurses, I dont think they are but thats what im gonna call them, were so nice and I probably seemed like a rough mom, but we've gone through this way too many times. Haley sat on my lap yelling "hold on hold on wait!" So the nurses waited and kept telling her ok we will wait. I did the parent whisper reminding her one last time of the rule. So then came the horrible mom, I looked at the nurse and said if you wait we will be here all day. So lets just do it. I sat haley in my lap, my legs wrapped around hers, one arm I held while holding her torso, my other arm was around her head... hugging it... lovingly. Another nurse came in to hold her arm straight, Haley screaming and crying. As a mom going through this you would think it would be a breeze by now, its not, it is a bit easier then the first couple times, but I still have to fight back tears. As with every other time, the second the needle goes in, she stops and all is well. She is such a nerd! Oh how I love my nerdy haley!
On our way out a young man, by young I mean 17 maybe, stopped Haley and told her she did such a good job. Tears in my eyes once again! Boys like that are just the best. The world would be a better place with more people like him. Haley will remember him and will want to talk about that everytime we go there.
Thanks so much to all of you who donated to the Hopewalk! We are looking forward to the walk and to see how much $ and awareness we can raise for Hopekids as a team!!!!!! Thanks again.
Monday, October 3, 2011 3:48 PM, MST
written by Kassie Bonura
Hopewalk link
Here is the link I was talking about. check it out!
http://www.firstgiving.com/fundraiser/Haleysheart/hopewalk
Thank you!
Kassie Nick Haley and Ashley
Hopekids.org
Restoring Hope. Transforming Lives.
"There is no medicine like hope, no incentive so great, and no tonic so powerful as the expectation of something tomorrow."
- Orison Swett Marden
http://www.firstgiving.com/fundraiser/Haleysheart/hopewalk
Thank you!
Kassie Nick Haley and Ashley
Hopekids.org
Restoring Hope. Transforming Lives.
"There is no medicine like hope, no incentive so great, and no tonic so powerful as the expectation of something tomorrow."
- Orison Swett Marden
Friday, September 30, 2011 8:51 AM, MST
written by Kassie Bonura
waiting....
This six weeks between doc. appts is going by incredibly slow! I just want to know already. We do have exciting news and some potentially not so exciting news. From the time haley started cows milk all the way until she was a bit over two within about an hour or two of consuming milk, ice cream, cheese or yogurt she would get congested, nasty cough, runny nose and eventually pneumonia, the last part of course was only before we knew what was causing it. When ashley was born, it was easier to keep them both off milk. Ashley didn't know any different. During this medical journey we learned alot of kids with cardiac issues have cardiac asthma with symptoms brought on by dairy. We were hopeful this was our case. And it looks like it was, either that or she grew out of it. She has had good amounts of cheese the past 2 weeks with no problems! Cheese is not really heart healthy so we aren't going crazy but its a relief and easier if a peice of cheese pizza or ice cream at a bday party doesn't throw her into 3 weeks of breathing in steroids three times a day. Now for the other side.....ashley has been suffering from a runny nose, wet cough and raspy breathing! We've cut the cheese again.....hahaha, sorry im leaving that. See if it clears up, then try again, see what happens. If it is, the next appt ashley will be getting her first echo to just go ahead a rule out any problems.
This weekend the girls are staying with the grandparents, while nick and I have some us time and the girls get grandparent time. It will be the first time I have left them overnight since all this came out. I trust them with my life yet im still nervous with the importance and dangers of her meds, and just not being there. But I know its a necessity and im so thankful for it. No new health changes. Haley was invited to her first friend bday party. She had a blast, we walked in and all her friends from school came up and said "hi haley!" All excited. I love it. I got to meet and chat with some moms from school. They are all so great and everytime im around them I just have to thank God for the special group of parents and kids that were placed perfectly in Mrs. Kenyons kindergarten.
Next appt I believe on the 18th. Also our family is doing a walk and raising money for Hopekids. It is an organization that puts together and plans activities for kids with life threatening medical conditions and their families. I will post the link in the next couple days.
Life is good.
This weekend the girls are staying with the grandparents, while nick and I have some us time and the girls get grandparent time. It will be the first time I have left them overnight since all this came out. I trust them with my life yet im still nervous with the importance and dangers of her meds, and just not being there. But I know its a necessity and im so thankful for it. No new health changes. Haley was invited to her first friend bday party. She had a blast, we walked in and all her friends from school came up and said "hi haley!" All excited. I love it. I got to meet and chat with some moms from school. They are all so great and everytime im around them I just have to thank God for the special group of parents and kids that were placed perfectly in Mrs. Kenyons kindergarten.
Next appt I believe on the 18th. Also our family is doing a walk and raising money for Hopekids. It is an organization that puts together and plans activities for kids with life threatening medical conditions and their families. I will post the link in the next couple days.
Life is good.
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