Kyle just took himself to the toilet (good), locked the door (bad), went potty (good) then smeared poop everywhere (very bad)... And you wonder why I'm resistant to potty train Dimiti!
I need a night off!!!
Spring
Our Treasures
Wednesday, November 14, 2012
Tuesday, November 6, 2012
Medical time
I'm spending 7-8 hours this week on medical care for our family. AND THAT'S JUST ROUTINE CARE! Typical of my life!
We all have unpleasant parts of life that we have to cope with. But after spending 2 1/2 hours for 6 ml blood for Kyle- Which is just over a teaspoon of blood- I want to scream!!! Ahhhhh
Spring
We all have unpleasant parts of life that we have to cope with. But after spending 2 1/2 hours for 6 ml blood for Kyle- Which is just over a teaspoon of blood- I want to scream!!! Ahhhhh
Spring
Tuesday, October 23, 2012
Friday, September 7, 2012
Tuesday, August 21, 2012
Sunday, August 12, 2012
Wednesday, August 8, 2012
Wednesday, August 1, 2012
Tuesday, July 24, 2012
Merlin serving Kyle
Sunday, July 8, 2012
Fwd: My new song
Our budding musician. :)
Spring
Begin forwarded message:
From: Sierra Bean <stuffedanimalgirl9@gmail.com>
Date: June 20, 2012 7:36:37 PM MDT
To: springcbean@gmail.com, Bean Kids <sweetlbean@gmail.com>
Subject: My new song
I really hope u like this because I thunk its the best one ever. please tell me by text or email if it was or thx enjoy
Friday, June 29, 2012
Hospital round 1 million
We had another surgical procedure today with general anesthesia at St Luke's in Boise Idaho. Kyle got three teeth pulled! He was not impressed when he woke up!
This week was Sierras turn to go with us to the hospital and see it up close and personal. She liked breakfast in the cafeteria and the stop at Tree City afterwards. She was a good helper and comfort to Kyle too.
We shook things up today by having our trainer meet us at the hospital with Merlin after Kyle woke up. Merlin did very well for this first time in his service dog role in the hospital. I was quite proud of him and Kyle loved it too. It calmed Kyle down to have Merlin with him.
All in all, another exciting step forward in our journey. Now I'm hoping to go home and have everyone take a long nap!!! ;)
Spring
This week was Sierras turn to go with us to the hospital and see it up close and personal. She liked breakfast in the cafeteria and the stop at Tree City afterwards. She was a good helper and comfort to Kyle too.
We shook things up today by having our trainer meet us at the hospital with Merlin after Kyle woke up. Merlin did very well for this first time in his service dog role in the hospital. I was quite proud of him and Kyle loved it too. It calmed Kyle down to have Merlin with him.
All in all, another exciting step forward in our journey. Now I'm hoping to go home and have everyone take a long nap!!! ;)
Spring
Wednesday, June 27, 2012
Friday, June 22, 2012
Dip and lick
The hospital, again
> This morning Kyle is in the hospital in Logan Utah for ear tubes and a hearing test. Lauren came with us today. She is helping me with Kyle and gets an up close and personal look at what exactly happens at the hospital.
>
> Dr Bennion is going to do 2 weeks of Biaxin for possible mycoplasma bacterial infection in the neomalone and the non healing part of his ear. And use antifungal drops for the drainage in his right ear in a couple weeks. Then Kyle needs rechecked in about 6 weeks.
>
> Of all the strange twists, Kyles hearing test came back normal-mild loss at 25 decibels in his right ear (it's the one that had reconstruction surgery in January). No tube is recommended and no hearing aid is recommended for the previously profound loss ear! The doctors said its highly unusual for this much hearing loss to recover. They said its a priesthood miracle. It is possible to fluctuate a bit - this is just not typical. I'm not sure how to Wrap my head around that after all the heroic time and effort we have put into improving/saving his hearing. Left was still at moderate loss neurosensory. It's stable and we will continue to aid it. But we are going to try no tube for a few months and see what happens. Both the ENT and the audiologist expressed lots of confidence in my judgement about watching Kyles symptoms and getting medical care/intervention for Kyle as needed They said they wouldn't trust everyone so much but with me they do! It's a very nice compliment and a very heavy weight! What if I miss things? Eek it's a lot of responsibility!
>
> So yet another loop in the roller coaster of Kyles health and life. The extremes are so extreme. Total hearing loss in right ear one year ago now normal! What?? I'm afraid to believe it. What if it's a fluke? Is there a cyclic hearing loss disorder? ? Kind of like sierras when she was diagnosed got a hearing aide then on retest had normal hearing. The doctor said possibly. Also said it could be related to his immune deficiency...
What fun. I'm glad it's good news!
> Spring
>
> Dr Bennion is going to do 2 weeks of Biaxin for possible mycoplasma bacterial infection in the neomalone and the non healing part of his ear. And use antifungal drops for the drainage in his right ear in a couple weeks. Then Kyle needs rechecked in about 6 weeks.
>
> Of all the strange twists, Kyles hearing test came back normal-mild loss at 25 decibels in his right ear (it's the one that had reconstruction surgery in January). No tube is recommended and no hearing aid is recommended for the previously profound loss ear! The doctors said its highly unusual for this much hearing loss to recover. They said its a priesthood miracle. It is possible to fluctuate a bit - this is just not typical. I'm not sure how to Wrap my head around that after all the heroic time and effort we have put into improving/saving his hearing. Left was still at moderate loss neurosensory. It's stable and we will continue to aid it. But we are going to try no tube for a few months and see what happens. Both the ENT and the audiologist expressed lots of confidence in my judgement about watching Kyles symptoms and getting medical care/intervention for Kyle as needed They said they wouldn't trust everyone so much but with me they do! It's a very nice compliment and a very heavy weight! What if I miss things? Eek it's a lot of responsibility!
>
> So yet another loop in the roller coaster of Kyles health and life. The extremes are so extreme. Total hearing loss in right ear one year ago now normal! What?? I'm afraid to believe it. What if it's a fluke? Is there a cyclic hearing loss disorder? ? Kind of like sierras when she was diagnosed got a hearing aide then on retest had normal hearing. The doctor said possibly. Also said it could be related to his immune deficiency...
What fun. I'm glad it's good news!
> Spring
Sunday, June 3, 2012
Growing
Sierra has the same size feet as me! She is 10! (almost 11!) and Lauren is 5'4" tall, one inch shorter than me! How does this happen???
They are becoming beautiful young women! Im just not ready for that! Seems like just yesterday they were 4&6!
Spring
They are becoming beautiful young women! Im just not ready for that! Seems like just yesterday they were 4&6!
Spring
Reflections
"Chronic" means it doesn't end. As humans we adapt to situations we find ourselves in which allows us to survive the bad and the good. Surviving gives us strength to stand against the next challenge. And when we break we learn new things. It's called growth and it hurts. I've learned that the Gospel of Jesus Christ is a resource for these times, not an insurance policy against them. And the principals of faith and prayer and blessings and the plan of salvation really do bring comfort. They don't however erase the pain. That's where we show that we will remain true and faithful by enduring through whatever comes our way. Like Job. He was poetic and inspiring but it was miserable for him.
So what does the time between the crises look like? There is alot of work to pick up the peices after you shatter and strengthen your self for the next surge. There is a lot of work to comfort and strengthen the family, individually and collectively, before the next trial. There needs to be time to rest but I don't do so good on that because I'm always trying to make sure Kyle and the other kids are ok and make sure that all those who offered support know they are valued because I need them to be there next time too and I want to be reciprocal in my friendships. It's alot of crying, journaling, grieving and starting over. Recommitting to things like exercise, healthy eating, playing and laughing, relaxing, letting your nerves relax but never knowing when the next crisis will leap out at you. It's alot of doctor visits, lots of record keeping of symptoms, hours of medical care daily as Kyle heals from the last event. It's watching strange rashes delevop on your son and not know why, it's caring for a bottom that's bled everyday for three weeks and almost everyday for just over two months. It's watching and helping the girls through their anger and resentment of their brother. It's helping Dimitri with his insecurity because mom and Kyle were gone again for a long time. It's trying to maintain and strengthen a marriage that's taxed. It's recommitting to dog training so we can get his service dog credentials.
It's celebrating birthdays, grocery shopping, watching movies, snuggling, eating ice cream, hosting end of school parties, planning summer camps, remodeling houses, doing laundry and dishes. All the while trying not to remember that these medical issues are life threatening and Kyle may be called home without me expecting it. It's trying to focus on the joy and savor the precious times while living in the shadow of life altering possibilities.
It's called Life. ☺ Today the sun is bright and the air is clear. The birds are singing and the trees are glorious. Life goes on.
Spring
So what does the time between the crises look like? There is alot of work to pick up the peices after you shatter and strengthen your self for the next surge. There is a lot of work to comfort and strengthen the family, individually and collectively, before the next trial. There needs to be time to rest but I don't do so good on that because I'm always trying to make sure Kyle and the other kids are ok and make sure that all those who offered support know they are valued because I need them to be there next time too and I want to be reciprocal in my friendships. It's alot of crying, journaling, grieving and starting over. Recommitting to things like exercise, healthy eating, playing and laughing, relaxing, letting your nerves relax but never knowing when the next crisis will leap out at you. It's alot of doctor visits, lots of record keeping of symptoms, hours of medical care daily as Kyle heals from the last event. It's watching strange rashes delevop on your son and not know why, it's caring for a bottom that's bled everyday for three weeks and almost everyday for just over two months. It's watching and helping the girls through their anger and resentment of their brother. It's helping Dimitri with his insecurity because mom and Kyle were gone again for a long time. It's trying to maintain and strengthen a marriage that's taxed. It's recommitting to dog training so we can get his service dog credentials.
It's celebrating birthdays, grocery shopping, watching movies, snuggling, eating ice cream, hosting end of school parties, planning summer camps, remodeling houses, doing laundry and dishes. All the while trying not to remember that these medical issues are life threatening and Kyle may be called home without me expecting it. It's trying to focus on the joy and savor the precious times while living in the shadow of life altering possibilities.
It's called Life. ☺ Today the sun is bright and the air is clear. The birds are singing and the trees are glorious. Life goes on.
Spring
Saturday, June 2, 2012
Dancin' in the Rain, almost
Sunday, May 27, 2012
Thursday, May 24, 2012
Anyone out there?
Ok so did I not make the message clear in my last update that we are dealing with scary stuff? I normally get several comments about my posts but this time I only got two. I know I haven't been a good support to you all because what I've been coping with for the last several years has consumed me but I still need your support.
It may be scary and you may not know what to say and feel helpless but silence isn't the right option for me. Many of you have asked what can you do? Don't hide from me. I want to hide from this but I can't. Please stay by me with your e-comments at least. It requires so little effort and commitment. No time at all really. Not like the support I need day to day that looks like meals or help with the kids, dishes, laundry, shopping and cleaning that only a few offer to help with. I'm overwhelmed and now I'm alone too. Please reach out to me.
Spring
It may be scary and you may not know what to say and feel helpless but silence isn't the right option for me. Many of you have asked what can you do? Don't hide from me. I want to hide from this but I can't. Please stay by me with your e-comments at least. It requires so little effort and commitment. No time at all really. Not like the support I need day to day that looks like meals or help with the kids, dishes, laundry, shopping and cleaning that only a few offer to help with. I'm overwhelmed and now I'm alone too. Please reach out to me.
Spring
Tuesday, May 22, 2012
Kyle's new diagnosis
We talked to Dr Risma from Cincinnati Childrens Hospital Immunology yesterday. We have been waiting for the results of a work up we started earlier this month. She called and said that Kyle has an immunodeficiency and possibly an immunedysfunction. She said we need further testing before we can decide the treatment. I recognized a few numbers and letters and know she was speaking english the whole time but I'm not sure what all she said. I finally asked if he needs a bone marrow transplant and the doctor said no, because it wouldn't help him. Alan did understand though and he is trying to tell me. He said basically the generals of Kyles immune system are dangerously low. That causes the rest of the immune army to run amuck. It's far more complicated than that, but thats all i know for now. As far as intervention for now, we just have to be vigilant about washing hands all the time. Anyone coming in to our home, anyone touching Kyle or any of the rest of us have to wash first and Kyle needs to limit exposure to large groups and avoid places with known illnesses.
We have to get the infection in kyles abdomen resolved before we can do further testing and workup. So, step one - go to another new doctor tomorrow. Step two - wait. Step three- go back to Ohio. Dr Risma said his food allergies/intolerances are related to the immunedeficiency and dysfunction but the how is still not clear. So he needs to be followed at a tertiary care center with expertise in immnology and GI and colorectal. There are only 5 spots in the country we could go. This work up will likely take most of a year, so no changes till then.
From a personal side, Kyle is still Kyle and nothing looks different on him from yesterday to today, but knowing that there is a hidden problem like this is a heavy blow. It requires grieving again. Sigh.
As for how Kyle is feeling. He feels poorly and has low energy. His bottom is bleeding and his body has a petechial rash all over. He is really patient though and is content to play his ipad, watch tv or just be held. He is such a sweetie.
So, thats all the news for now.
Spring
We have to get the infection in kyles abdomen resolved before we can do further testing and workup. So, step one - go to another new doctor tomorrow. Step two - wait. Step three- go back to Ohio. Dr Risma said his food allergies/intolerances are related to the immunedeficiency and dysfunction but the how is still not clear. So he needs to be followed at a tertiary care center with expertise in immnology and GI and colorectal. There are only 5 spots in the country we could go. This work up will likely take most of a year, so no changes till then.
From a personal side, Kyle is still Kyle and nothing looks different on him from yesterday to today, but knowing that there is a hidden problem like this is a heavy blow. It requires grieving again. Sigh.
As for how Kyle is feeling. He feels poorly and has low energy. His bottom is bleeding and his body has a petechial rash all over. He is really patient though and is content to play his ipad, watch tv or just be held. He is such a sweetie.
So, thats all the news for now.
Spring
Monday, May 14, 2012
Saturday, May 12, 2012
Friday, May 11, 2012
Cincinnati trip 4, day 7
Well we are leaving in the morning for Idaho. Kyle is responding well to the iv antibiotics and we will be discharged straight to the airport in the morning. I'm so glad that Louise has been here with me.
It's been a week at the hospital. Literally. The two days Kyle wasn't in the hospital he had clinic visits literally all day long. We have done no sight seeing and very little playing. Thats what happens with two admits in obe week! Poor Kyle has had 4 iv's and one blood draw and one missed stick! And two OR visits. It's been fun.
I have "danced" toe to toe with colorectal surgery, GI, allergy, pain, psychology, infectious disease, and immunology. If anyone needs me to advocate for them speak now before I take a break and sleep for a week! Oh right, I can't I'm going home to soothe the ruffled souls at home who have missed me. Well get in line. I'm taking applications for next week. Then I have to repay myself and recover because as cool and strong as I have been, nothing is free and I'll have to work just as hard to recover as I've had to I order to take Care of Kyle. I sure treasure my little man! I also sure value doctors like Marc Levitt, who is not only amazingly skilled but a patient advocate too! He is the reason things turned out so well.
I understand Kyle on a new level and I have a plan of care in place for each of the above areas and it's going to be quite good for him. I've used my brain alot. I've got a great team assembled. I'm not worried about if his life is in danger after today. There are a lot of things pending and some will be new problems that I have to learn about. They will have to be grieved over. I'm never sure what the future holds but I'm ready to face it.
The team leaders are Marc Levitt, colorectal, Kimberly Risma - immunology, Bill Putnam - GI, Connelly,- infectious disease.
Albonia - allergy and Franchosi - Gi did not make the team.
So I'm hoping that over days and the next few weeks my body will un-tense and I can pay the emotional toll from the week.
Day 8, heading home. Nite nite
Spring
It's been a week at the hospital. Literally. The two days Kyle wasn't in the hospital he had clinic visits literally all day long. We have done no sight seeing and very little playing. Thats what happens with two admits in obe week! Poor Kyle has had 4 iv's and one blood draw and one missed stick! And two OR visits. It's been fun.
I have "danced" toe to toe with colorectal surgery, GI, allergy, pain, psychology, infectious disease, and immunology. If anyone needs me to advocate for them speak now before I take a break and sleep for a week! Oh right, I can't I'm going home to soothe the ruffled souls at home who have missed me. Well get in line. I'm taking applications for next week. Then I have to repay myself and recover because as cool and strong as I have been, nothing is free and I'll have to work just as hard to recover as I've had to I order to take Care of Kyle. I sure treasure my little man! I also sure value doctors like Marc Levitt, who is not only amazingly skilled but a patient advocate too! He is the reason things turned out so well.
I understand Kyle on a new level and I have a plan of care in place for each of the above areas and it's going to be quite good for him. I've used my brain alot. I've got a great team assembled. I'm not worried about if his life is in danger after today. There are a lot of things pending and some will be new problems that I have to learn about. They will have to be grieved over. I'm never sure what the future holds but I'm ready to face it.
The team leaders are Marc Levitt, colorectal, Kimberly Risma - immunology, Bill Putnam - GI, Connelly,- infectious disease.
Albonia - allergy and Franchosi - Gi did not make the team.
So I'm hoping that over days and the next few weeks my body will un-tense and I can pay the emotional toll from the week.
Day 8, heading home. Nite nite
Spring
Thursday, May 10, 2012
Cincinnati trip 4, day 6
Busy day. Hard day. Don't want to do this one again. Kyle got admitted for a bad infection again and IV antibiotics. New providers on my "black list". New favorite provider. Wish Alan was here, So glad Louise is here.
Spring
Spring
Wednesday, May 9, 2012
Cincinnati trip 4, day 5
Today was a record day. We has a 5 that's right, 5 hour clinic visit. Lots of waiting. 3 RNs 1 fellow and 1 md. Dr Kimberly risma, immunologist.
She asked how we got to her clinic. I told her the EE clinic put us on your schedule. More than that I don't know. She was very nice and appeared very knowledgeable and after we discussed Kyles issues said, that's a lot for you to deal with took my hand and said I'm going to add to that List. She started to explain how, I became totally confused (which is hard to do to me...). When I said I felt like I was missing something she said she was too and we needed to wait for the labs to come back. And wouldn't say more. It has something to do with T cell malfunction And lymphocytes etc. I called again later back to our nurse and she dodged my questions. And just said wait.
It feels like they are slowly preparing me for really bad news. I'm aggravated I don't know what yet. I have some guesses but none are good. It feels like one of those defining moments in life is approaching.
Then on tip of that Kyle developed on infection at the revision site. It's quickly spreading and getting bad.
Anyway, lots to look forward to for tomorrow. I'm packing the hospital bags just in case...
Spring
She asked how we got to her clinic. I told her the EE clinic put us on your schedule. More than that I don't know. She was very nice and appeared very knowledgeable and after we discussed Kyles issues said, that's a lot for you to deal with took my hand and said I'm going to add to that List. She started to explain how, I became totally confused (which is hard to do to me...). When I said I felt like I was missing something she said she was too and we needed to wait for the labs to come back. And wouldn't say more. It has something to do with T cell malfunction And lymphocytes etc. I called again later back to our nurse and she dodged my questions. And just said wait.
It feels like they are slowly preparing me for really bad news. I'm aggravated I don't know what yet. I have some guesses but none are good. It feels like one of those defining moments in life is approaching.
Then on tip of that Kyle developed on infection at the revision site. It's quickly spreading and getting bad.
Anyway, lots to look forward to for tomorrow. I'm packing the hospital bags just in case...
Spring
Tuesday, May 8, 2012
Cincinnati trip 4, day 4
It's been a long, intense, lonely and exhausting day.
Kyles ok. The center of his belly button is gone. It looks a little disturbing but it is what it is I guess. Another thing to adjust to. Hopefully it works better now. Kyle left the hospital to tonight. He was very happy and made happy sounds on the way to the car and as we drove away. He is snuggling on my shoulder now to sleep. He wants to be held alot! It's very sweet! I got a cold and my eyes are getting goobers. Louise just arrived and I should see her soon.
I'm too tired to give my normal detailed accounting of today. For you technical types I'll just have to fill you in later.
Spring
Kyles ok. The center of his belly button is gone. It looks a little disturbing but it is what it is I guess. Another thing to adjust to. Hopefully it works better now. Kyle left the hospital to tonight. He was very happy and made happy sounds on the way to the car and as we drove away. He is snuggling on my shoulder now to sleep. He wants to be held alot! It's very sweet! I got a cold and my eyes are getting goobers. Louise just arrived and I should see her soon.
I'm too tired to give my normal detailed accounting of today. For you technical types I'll just have to fill you in later.
Spring
Monday, May 7, 2012
Fwd: Mom and Kyles day
I thought a real life conversation might make a good update on Kyles day. Enjoy...
Spring
Begin forwarded message:
From: Spring Bean <springcbean@gmail.com>
Date: May 7, 2012 7:32:02 PM EDT
To: Capture The Magic Blog <sabean1.climber@blogger.com>
Subject: Mom and Kyles day
Stay tuned!Spring: Now I'm annoyed about the "big system" that I have no control over!
I'm waiting in the prep (it's Been almost two hours now) for Kykes endoscopy Etc without a real plan for what will happen afterwards. I'm tired of explaining Kyles needs over snd over. And having so many different opinions and thoughts. I hope this is worth it.
Alan: it will be, hang in there.
Spring: Will it. Where will I go tonight? The hospital is so much easier than a hotel or home for Kyle. It reminds me that he really does require institutional levels of Care....Not to say that it's better for him but in a twisted way it's a nice break for me.
Kyle just went to sleep for the procedure. Gi and colorectal are both saying sure he can stay but want to have the other team make up the strong medical justification for insurance...
I don't really care but I smiled politely and told them how nauseated he gets and about his large residuals and low sats... Anyway. I don't care I'm hungry and have a headache and am sick of the drama.
Alan: You are doing beautifully. Get some food, get away from the situation and something should work out.
Spring: Gi says his insides look good. Francisis expects biospies to be normal. Then the next step is introduce new foods and rebiospy in 3 months.
Alan: Biopsy results were not cool we are not going to keep doing this five times a year.
Spring: Yea. I'll see how the rest of the info goes and then we can make plans from there. You felt like its worth it to do this. It's hard not to be emotionally up then down with each interaction because we've anticipated it so long. I'm trying to follow my own wisdom and not get too hooked by incomplete data.
So far the info and possibilities are the same as we suspected. Because of our knowledge and life with kyle there is rarely something that blows our socks off now
It could be liberating for him to be able to eat more things without risk. Although I'm not enthusiastic about reintroducing things he hasn't tolerated. I consented to a study being done by the Gi guy in Denver. Sounds like his expertise is as great as these guys here, not that I'm saying I want to start over with another new doc but simply that we have another option. Denver may feel less challenging to follow with. Cheaper shorter flight...
Alan: No comment yet. Let's see how we do.
Spring: Agreed. I feel disappointed in the preliminary report. I feel caught in a river current that I can't control. It's not a pleasant feeling for someone who loves control.
Alan: I'm done splitting up the family for medical travel.
Spring: Yea I know...
It's amazing how whatever the family wants is never he same as the hospital plan. If I wanted to go I'd have to stay if I wanted to stay Id have to go. Why? (that's rhetorical) my mind is numb. I'm exhausted and all I've done is sit at the hospital, hold my child and leave my life to someone else's discretion.
Alan: Yeah, I know. I love you. Keep up the good fight.
Spring: Thanks well they decided to keep him. They made him npo. They should thank me because he just started retching after they gave him zofran in the OR. So I vented his g tube before giving him his night meds and I got out 100cc!!!! All that worry about the insurance company is now gone because he truly needs the IV fluids as "twas foretold" by yours truly...
That means likely tomorrow he will be here overnight again because as I said his tummy doesn't wake up....I don't want to stay tomorrow....
Sunday, May 6, 2012
Saturday, May 5, 2012
Cincinnati trip 4, day 1
Hello! Kyle and I are on our way to Cincinnati Ohio again. Alan is staying home to take care of the other kids. We plan to be there for a full week. Longer if needed due to complications. My sister Louise will join me half way through.
Kyle will be admitted to Cincinnati Childrens hospital tomorrow morning. He will have a couple procedures on Monday and surgery on Tuesday. Depending on what the surgeon finds and how he does determines when he gets released. Then Kyle has 2-3 clinic visits a day for the rest of the week.
The surgery is to fix a complication from the surgery in October. The procedures and clinic visits are to reevaluate his food allergies, metabolic disorder, chronic pain and immune system.
Merlin, Kyles service dog, missed coming with us in his role as a service dog by only a month or so. He started working in public with his little vest a few weeks ago and our trainer hopes that he will pass the first public access test within a month! I'm so pleased with our little dog! I'll miss him too!
I'm not "looking forward" to the next week. But I'm ready to get on with it. It's going to be a hard week. These things always are. It makes it worse to pretend that it won't be so I say "bring it on'"!
Spring
Kyle will be admitted to Cincinnati Childrens hospital tomorrow morning. He will have a couple procedures on Monday and surgery on Tuesday. Depending on what the surgeon finds and how he does determines when he gets released. Then Kyle has 2-3 clinic visits a day for the rest of the week.
The surgery is to fix a complication from the surgery in October. The procedures and clinic visits are to reevaluate his food allergies, metabolic disorder, chronic pain and immune system.
Merlin, Kyles service dog, missed coming with us in his role as a service dog by only a month or so. He started working in public with his little vest a few weeks ago and our trainer hopes that he will pass the first public access test within a month! I'm so pleased with our little dog! I'll miss him too!
I'm not "looking forward" to the next week. But I'm ready to get on with it. It's going to be a hard week. These things always are. It makes it worse to pretend that it won't be so I say "bring it on'"!
Spring
Tuesday, May 1, 2012
Our budding businesswoman
Sierra has set up her first business. Making flower duct tape pens. She charges $2.00 each. She has sold them at school mainly. She has now made $14! She said that the other kids at school have started making them so her orders have dropped off. Bummer. But what a great first business venture! She has now had her grandma Bowden advertise them for her on her website. Good luck on selling!
Spring
Spring
Friday, April 27, 2012
Fwd: Gas passing through neo Malone
An excerpt from a day in our life...
Spring
Begin forwarded message:
From: Spring Bean <springcbean@gmail.com>
Date: April 27, 2012 10:11:43 AM MDT
To: Cathy Bauer <Cathy.Bauer@cchmc.org>
Subject: Gas passing through neo Malone
Hi Cathy,
I just wanted to update you on Kyle.
On Monday the 23rd, I opted to place an 8 French green argyle tube in the neo Malone to address the continued structure. By Wednesday it was significantly swollen, inflamed and painful with increasing redness. A five day course of po Cipro was started. Symptoms increased and Thursday I removed the green argyle tube. Friday morning I placed an 8 French straight, blue tipped urinary cathedar. Saturday we will see the pediatrician in clinic with the goal being to maintain access until the redo on May 8th and clear symptoms of infection so the surgery can happen.
I don't know if this is significant, but this morning while I was using a hot pack on the site, there was gas passing out his belly button and flecks of stool.
Thanks again for your help!
Spring
Thursday, April 19, 2012
Merlin
I'm so proud. Our puppy is getting vested as a service dog! Next week! Don't know all of what that means but its 3 months early! We are heading to the mall! Wow! Proud moment.
Spring
Saturday, April 7, 2012
Blonde no more!
Friday, April 6, 2012
Kyle IV
Hello everyone. Just a quick note to tell you all that Kyle has an IV. Kyle got sick 2 weeks ago and He just has not gotten better. So today his doctor decided to give him IV fluids. The hospital is full and since Alan is a doc we got sent home with IV fluids. Poor kid is not happy. It's less disruptive than me and Kyle being gone but, still hard and pretty intense here.
Spring
Saturday, March 17, 2012
Fwd: 7 Things You Don't Know About A Special Needs Parent
Gives a good summary of how it feels to walk in my shoes.
Spring
Begin forwarded message:
From: Katie Cartwright <zoey357@msn.com>
Date: March 16, 2012 8:37:06 PM MDT
To: "springcbean@gmail.com" <springcbean@gmail.com>
Subject: 7 Things You Don't Know About A Special Needs Parent
ReactRead moreAbout 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Jacob's future, whether he will ever drive a car, or get married, or live independently. I am scared thinking of the hurts he will experience being "different" in what's often a harsh world (not to mention that I fear for the physical safety of the person who inflicts any hurt upon my son). I am scared about finances. Finally, I fear what will happen to Jacob if anything were to happen to me. In spite of this, my fears have subsided greatly over the years because of my faith, and because of exposure to other kids, teenagers, and adults affected with Jacob's disorder. When I met some of these amazing people at a conference last year, the sadness and despair that I was projecting onto Jacob's future life (because it was so unknown) melted away when I saw the love and thriving that was a reality in their lives. The fear of emotional pain (for both me and Jacob) is probably the one that remains the most.
5. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
6. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watchMad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
7. I want to talk about my son/It's hard to talk about my son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.
Follow Maria Lin on Twitter: www.twitter.com/marialinnyc
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