Please visit my new blog for the latest in my amazing journey! :) You won't believe all the incredible things I am doing these days...I'm definitely living up to my name "Mighty Max."
I'm still struggling with some health issues, but I am determined to not let them stop me from enjoying life and reaching my goals. So many fun things to do!
My mommy temporarily had our new site private, but she is so proud of me (that's putting it lightly...she absolutely adores me and thinks I practically walk on water!!!) and wants to share my wonderful spirit and energy with the world.
Hope you enjoy reading about my journey! :)
Saturday, March 03, 2007
Sunday, January 28, 2007
Insightful Article about CHARGE
A mother (of an adorable daughter with CHARGE) wrote the following article for a Deaf-Blind Awareness week publication in IL. I think it is a wonderful description of the overwhelming sensory issues impacting our special children.
CHARGE syndrome is becoming one of the leading causes of congenital deaf-blindness. Consider this. At its worst, CHARGE strips a child of all senses. Vision, hearing, and balance can be absent due to malformations of the eye and any or all parts of the inner and middle ear. Taste can be eliminated due to prohibition of oral feeding caused by swallowing problems, severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be absent due to problems with the olfactory nerve. Touch can be reduced due to severe sensory defensiveness and integration issues.
Obviously, a child with such severe sensory limitations will be a challenge in the classroom. How do you tap into a child's intellect when all of the sensory pathways are impeded? The question boggles my mind. I'm speechless at the thought of it. (Those who know me understand that I am not often speechless!)
David Brown, a California Deaf-Blind Educator and CHARGE Specialist put it this way: CHARGE is "medically and developmentally, one of the most complex conditions that we know. Children with CHARGE are also likely to be amongst the most truly 'multi sensory impaired' people you will ever meet, having difficulties not just with vision and hearing but also with the senses that perceive balance, touch, temperature, pain, pressure, and smell. The many different anomalies associated with CHARGE will each impose different, varying, and often, conflicting demands upon the child."
With the worst-case scenario in mind, my daughter is doing incredibly well. She can see out of one eye. She can hear with one ear. After using a feeding tube in infancy, she can now eat virtually anything. After years of sensory issues, she is gaining more and more control over her own sensory state. Her balance is a bit shaky - but it's there.
To the outsider, to the untrained eye, she functions well. She seems to see"okay". She seems to hear "just fine". She gets around "okay". Everything looks different - but "okay". What is unseen is the invisible effort it takes for her to appear to function so well. It's hard to imagine the effort it takes to keep her body straight in the chair, to keep her visualand auditory attention focused on the task at hand, to keep her pencil steady in her unusually limber and uncoordinated little hand. She is getting sensory input from all 5 senses - but all of the information isslightly skewed or incomplete. Somehow, she manages to create a fairly decent, but unique, view of her world from all of that incomplete and slightly inaccurate input.
How do we ensure that the view she is creating and the concepts she is developing are correct? How do we ensure that she gets as accurate and complete information as possible? How do we adjust her day for the fatigue that comes from all the effort it takes to simply "be"? How do we fit all of the necessary therapies (OT, PT, speech, O&M, and more) into her schoolday without losing time for academics? How do we support her social development when her experience of the world is so vastly different from her age-mates?
I can assure you that a typical classroom teacher in a typical school district with typically available special education supports cannot answer the above questions. Specialists in deaf-blindness with experience and understanding of the complexities of the multiple impairments of CHARGE are absolutely necessary for the success of my daughter and other children like her. Specialized supports must be available around the country in order for children with multiple and complex impairments, including deaf-blindness, to be understood and to be supported to succeed.
CHARGE syndrome is becoming one of the leading causes of congenital deaf-blindness. Consider this. At its worst, CHARGE strips a child of all senses. Vision, hearing, and balance can be absent due to malformations of the eye and any or all parts of the inner and middle ear. Taste can be eliminated due to prohibition of oral feeding caused by swallowing problems, severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be absent due to problems with the olfactory nerve. Touch can be reduced due to severe sensory defensiveness and integration issues.
Obviously, a child with such severe sensory limitations will be a challenge in the classroom. How do you tap into a child's intellect when all of the sensory pathways are impeded? The question boggles my mind. I'm speechless at the thought of it. (Those who know me understand that I am not often speechless!)
David Brown, a California Deaf-Blind Educator and CHARGE Specialist put it this way: CHARGE is "medically and developmentally, one of the most complex conditions that we know. Children with CHARGE are also likely to be amongst the most truly 'multi sensory impaired' people you will ever meet, having difficulties not just with vision and hearing but also with the senses that perceive balance, touch, temperature, pain, pressure, and smell. The many different anomalies associated with CHARGE will each impose different, varying, and often, conflicting demands upon the child."
With the worst-case scenario in mind, my daughter is doing incredibly well. She can see out of one eye. She can hear with one ear. After using a feeding tube in infancy, she can now eat virtually anything. After years of sensory issues, she is gaining more and more control over her own sensory state. Her balance is a bit shaky - but it's there.
To the outsider, to the untrained eye, she functions well. She seems to see"okay". She seems to hear "just fine". She gets around "okay". Everything looks different - but "okay". What is unseen is the invisible effort it takes for her to appear to function so well. It's hard to imagine the effort it takes to keep her body straight in the chair, to keep her visualand auditory attention focused on the task at hand, to keep her pencil steady in her unusually limber and uncoordinated little hand. She is getting sensory input from all 5 senses - but all of the information isslightly skewed or incomplete. Somehow, she manages to create a fairly decent, but unique, view of her world from all of that incomplete and slightly inaccurate input.
How do we ensure that the view she is creating and the concepts she is developing are correct? How do we ensure that she gets as accurate and complete information as possible? How do we adjust her day for the fatigue that comes from all the effort it takes to simply "be"? How do we fit all of the necessary therapies (OT, PT, speech, O&M, and more) into her schoolday without losing time for academics? How do we support her social development when her experience of the world is so vastly different from her age-mates?
I can assure you that a typical classroom teacher in a typical school district with typically available special education supports cannot answer the above questions. Specialists in deaf-blindness with experience and understanding of the complexities of the multiple impairments of CHARGE are absolutely necessary for the success of my daughter and other children like her. Specialized supports must be available around the country in order for children with multiple and complex impairments, including deaf-blindness, to be understood and to be supported to succeed.
Tuesday, January 16, 2007
SAVE THE DATE
The 20 Hour Crop for the Mighty Maxwell Guild is scheduled for Friday, April 20th and Saturday, April 21st. Details will be coming out in the next month, but for now...please mark it on your calendar. Last year we raised nearly $15,000 and we would love to match that again this time!
The money raised through the Mighty Maxwell Guild supports the Uncompensated Care Fund at Children's Hospital in Seattle. This fund ensures that every child, regardless of insurance or financial means, receives quality medical care.
Thank you to everyone for your support of this very worthy cause! :)
The money raised through the Mighty Maxwell Guild supports the Uncompensated Care Fund at Children's Hospital in Seattle. This fund ensures that every child, regardless of insurance or financial means, receives quality medical care.
Thank you to everyone for your support of this very worthy cause! :)
Tuesday, January 02, 2007
QUICK UPDATE & SITE INFO
If you have requested but not received your "invite," please check your spam mail. Several people have found the emails going directly to there because of the address used from google.
Meanwhile, until you gain access...
Max is doing pretty well! :) We have all taken turns getting the stomach bug (again) and Max is even kind enough to share it with his nurses. I was pretty worried a few days ago about him but he has finally bounced back to somewhat his normal self.
I am quickly learning that isolation is very important for Maxwell. His immune system is truly compromised. It's amazing how quickly he can catch the latest bug and how much longer it takes him to recover.
Despite the bugs, he has reached some new milestones, which is VERY exciting, and is sporting a cool new short haircut. Incredibly handsome as always. :)
On a personal note, thanks for all the concerned emails about my health...greatly appreciated! The series of heart and lung tests all came back relatively normal. Yay! Well, ok they did diagnose me with "asthma" after a very lengthy test last week, but most likely it is stress induced...and fortunately it isn't anything serious. But my doctor highly recommended I find a way to eliminate at least some of the stress...hmm, perhaps resolving the divorce (separate post on that) will help.
This afternoon Max has OT at the hospital and then massage therapy at our house. The massages are supposed to help with his muscle tone and getting him familiar with his body. This is our third session.
This week we have our annual Birth to Three evaluation of Maxwell. We will review the goals we set in January 2006 and establish new ones for 2007! I am so excited to report everything he has accomplished! :)
Meanwhile, until you gain access...
Max is doing pretty well! :) We have all taken turns getting the stomach bug (again) and Max is even kind enough to share it with his nurses. I was pretty worried a few days ago about him but he has finally bounced back to somewhat his normal self.
I am quickly learning that isolation is very important for Maxwell. His immune system is truly compromised. It's amazing how quickly he can catch the latest bug and how much longer it takes him to recover.
Despite the bugs, he has reached some new milestones, which is VERY exciting, and is sporting a cool new short haircut. Incredibly handsome as always. :)
On a personal note, thanks for all the concerned emails about my health...greatly appreciated! The series of heart and lung tests all came back relatively normal. Yay! Well, ok they did diagnose me with "asthma" after a very lengthy test last week, but most likely it is stress induced...and fortunately it isn't anything serious. But my doctor highly recommended I find a way to eliminate at least some of the stress...hmm, perhaps resolving the divorce (separate post on that) will help.
This afternoon Max has OT at the hospital and then massage therapy at our house. The massages are supposed to help with his muscle tone and getting him familiar with his body. This is our third session.
This week we have our annual Birth to Three evaluation of Maxwell. We will review the goals we set in January 2006 and establish new ones for 2007! I am so excited to report everything he has accomplished! :)
DIVORCE UPDATE
It was definitely a good time that I started a new, more private site...this ridiculous divorce battle doesn't appear to be over anytime soon. And I'm sure I will have some venting to do.
Last week we received the proposed divorce order from the soon to be ex. Wow, it was more ludicrous than I thought possible.
Despite it being decided in court that I cannot work due to Max's needs, he is refusing to pay any spousal support....zip, zero, none. He will only pay child support as ordered by the court.
He didn't offer any suggestions...so I'm not sure what he thinks Max and I would do. How can I be Max's full time caregiver if there is absolutely no income?
Now both proposed orders are with the judge and we will wait to hear what she decides. I am hoping we don't have to appeal. I can think of much better ways to spend our money and time.
Last week we received the proposed divorce order from the soon to be ex. Wow, it was more ludicrous than I thought possible.
Despite it being decided in court that I cannot work due to Max's needs, he is refusing to pay any spousal support....zip, zero, none. He will only pay child support as ordered by the court.
He didn't offer any suggestions...so I'm not sure what he thinks Max and I would do. How can I be Max's full time caregiver if there is absolutely no income?
Now both proposed orders are with the judge and we will wait to hear what she decides. I am hoping we don't have to appeal. I can think of much better ways to spend our money and time.
Tuesday, December 26, 2006
NEW SITE REMINDER
Got back late tonight from another day at Children's...ENT appointment (positive) and hearing test (negative). Max will be happy to wake up tomorrow morning and finally get to play with all his new Christmas toys.
And we added to his treasures even more today! We stopped at the toy store and bought a lot more fun bath toys. :) Ok, I went overboard, but he is really starting to enjoy bathtime and that is so exciting!
ANYWAY, I received a lot more emails today from people concerned why I haven't been posting anything new on this site. Nothing is wrong, it's just that we started a new website. I think some people missed my entry about our new site that will be more limited to our friends, family and "cheerleaders."
The 12/18 entry explains the who, what, why. Any questions, send me an email at amysmckinley@aol.com. (The new site has videos of Mighty Max too...so cute!)
If you fit into one of those categories above and have not yet received an email invite, please let me know. Sorry if I have forgotten about you!
Ok, off to bed...no nurse last night or tonight and after today, I am very very tired!
And we added to his treasures even more today! We stopped at the toy store and bought a lot more fun bath toys. :) Ok, I went overboard, but he is really starting to enjoy bathtime and that is so exciting!
ANYWAY, I received a lot more emails today from people concerned why I haven't been posting anything new on this site. Nothing is wrong, it's just that we started a new website. I think some people missed my entry about our new site that will be more limited to our friends, family and "cheerleaders."
The 12/18 entry explains the who, what, why. Any questions, send me an email at amysmckinley@aol.com. (The new site has videos of Mighty Max too...so cute!)
If you fit into one of those categories above and have not yet received an email invite, please let me know. Sorry if I have forgotten about you!
Ok, off to bed...no nurse last night or tonight and after today, I am very very tired!
Thursday, December 21, 2006
GUESS WHAT TODAY IS?
MY ONE YEAR ANNIVERSARY! Yep I have officially been home one entire year from the hospital! WOW! :)
Last year at this time I was incredibly fragile. My mom was warned repeatedly "this kid has terrible lungs, he is on thin ice and when he starts to crack, he will go down quickly...very quickly." Yikes, that sure made her nervous! Mom says her emotions (happiness & fear) from that day are still very fresh.
But look at me now...what a difference a year makes! YAY FOR ME! YAY FOR ME! YAY FOR ME! :)
*We were hoping to have a fun, simple day to celebrate this amazing accomplishment, but my heart was going super low again last night. Mom paged the cardiologist at midnight and the nurse kept a close eye on me. We are going to do a halter monitor...AGAIN...today. Oh well! We will still celebrate my special anniversary, just with a few extra wires! :)
Last year at this time I was incredibly fragile. My mom was warned repeatedly "this kid has terrible lungs, he is on thin ice and when he starts to crack, he will go down quickly...very quickly." Yikes, that sure made her nervous! Mom says her emotions (happiness & fear) from that day are still very fresh.
But look at me now...what a difference a year makes! YAY FOR ME! YAY FOR ME! YAY FOR ME! :)
*We were hoping to have a fun, simple day to celebrate this amazing accomplishment, but my heart was going super low again last night. Mom paged the cardiologist at midnight and the nurse kept a close eye on me. We are going to do a halter monitor...AGAIN...today. Oh well! We will still celebrate my special anniversary, just with a few extra wires! :)
OVERWHELMED BUT TRULY THANKFUL
WOW, WOW, WOW! :)
I have absolutely been bombarded with emails from international Max's fan club. It's truly amazing to read how his story has inspired so many people...thank you, thank you for being so honest and sharing how much you adore Maxwell. Many of you wrote "I know you are going to think I'm weird..." or "I know we have never met, but I absolutely love you guys..." or "Max has changed my view on the world..."
I certainly know how much Maxwell has changed me, but to read about his impact on complete strangers is truly incredible...more than I can adequately express in words. He truly was sent here for a reason...just the way he is.
While Max and his amazing special friends are certainly "high maintenance" sometimes, they are changing this world...person by person...for the better. They have the unique ability to open our hearts to the important things in life and teach us to appreciate each and every moment.
On the way to Children's yesterday, I was listening to a Christian talk show and there was a segment on special needs children and their positive impact on friends and family members. It was exactly the message I needed to hear that day...and then coming home and reading the hundreds and hundreds of emails about your love for Max was the icing on the cake. Thank you again for sharing your experiences with Mighty Max's journey.
And also, please accept my apologies that I have not yet been able to add everyone to the invite list. I am trying to sort through the names and add them into the website whenever I get a free moment.
Perhaps I will post a message or two on this public blog while I am still transitioning over to the more private one...
I have absolutely been bombarded with emails from international Max's fan club. It's truly amazing to read how his story has inspired so many people...thank you, thank you for being so honest and sharing how much you adore Maxwell. Many of you wrote "I know you are going to think I'm weird..." or "I know we have never met, but I absolutely love you guys..." or "Max has changed my view on the world..."
I certainly know how much Maxwell has changed me, but to read about his impact on complete strangers is truly incredible...more than I can adequately express in words. He truly was sent here for a reason...just the way he is.
While Max and his amazing special friends are certainly "high maintenance" sometimes, they are changing this world...person by person...for the better. They have the unique ability to open our hearts to the important things in life and teach us to appreciate each and every moment.
On the way to Children's yesterday, I was listening to a Christian talk show and there was a segment on special needs children and their positive impact on friends and family members. It was exactly the message I needed to hear that day...and then coming home and reading the hundreds and hundreds of emails about your love for Max was the icing on the cake. Thank you again for sharing your experiences with Mighty Max's journey.
And also, please accept my apologies that I have not yet been able to add everyone to the invite list. I am trying to sort through the names and add them into the website whenever I get a free moment.
Perhaps I will post a message or two on this public blog while I am still transitioning over to the more private one...
Monday, December 18, 2006
LONG OVERDUE UPDATE
Our nurse came down with the yucky stomach virus that Maxwell has, so I am "on duty" tonight. Unfortunately Max's silly heart is playing tricks on me...major bradycardia. His heart rate is actually lower than ever, but he is managing to keep his sats up with oxygen. So I don't think an ER trip is necessary, but close monitoring is. This kiddo sure knows how to keep his mommy on her toes!
Max's Gtube also failed tonight...huge hole in the balloon that keeps it in his stomach. Unfortunately this was his backup Gtube, and the equipment company didn't have any extras in the right size. The problem is that you have to keep something in the hole or it will close quickly. So I have taped it down like crazy and hopefully that will hold it until we get to the hospital tomorrow morning. Additionally he is having major issues with his feeding (coming out both ends if you know what I mean) and is only able to tolerate Pedialyte.
So all in all...Max is having one of his more "high maintenance" days...to put it lightly. :)
Since I have to stay awake anyway, I thought I would finally respond to everyone's emails, posts and phone calls. Thank you so very much for your concern and your interest. The number of people missing their Mighty Max "fix" is incredible. It's amazing how many people have fallen in love with him via the internet. He certainly is one loved, adored and cherished lil' boy!
The reason we haven't posted is two fold.
First, we have been quite busy with Max's ongoing stomach bug, numerous therapy/doctor appointments, and of course holiday preparations. (I was on the hunt for the perfect activity table for him and I finally found it...YAY! Soooo excited! But now it's taking all my willpower to wait until Christmas!)
Second, I have been wanting to do something different with our blog and I just needed to set some time aside to make that happen. I am setting up an "invitation only" site for our friends and family. I will keep you posted. In the meantime, send me your email address (amysmckinley@aol.com) if I haven't already invited you and you wish to be included. There are thousands of people who regularly read this blog now so the list can be a bit overwhelming. Sorry if I have overlooked your address. :)
Why do I want to make our site more private? Well, the journey of a special needs child and a single mom is an emotional roller coaster. When discussing the photos from our Christmas card exchange, I think a mom on our CHARGE listserv recently expressed it best..."all our CHARGE families have a similar wise, worn, loving look - the look of love cracked open, laid vulnerable and held with great reverence and gratitude."
It's that "cracked open, laid vulnerable" feeling that pushed me to start a more private blog. I only want our friends and family who love us and are genuinely interested in Max's well being to have access to our daily lives, our joys and sorrows, our accomplishments and frustrations...and all the in between.
Well I best run for now. We have clinic visits tomorrow at Children's (hoping they don't keep us overnight) and need to get us packed up and ready to go. I'll keep you posted on our new site. :)
Max's Gtube also failed tonight...huge hole in the balloon that keeps it in his stomach. Unfortunately this was his backup Gtube, and the equipment company didn't have any extras in the right size. The problem is that you have to keep something in the hole or it will close quickly. So I have taped it down like crazy and hopefully that will hold it until we get to the hospital tomorrow morning. Additionally he is having major issues with his feeding (coming out both ends if you know what I mean) and is only able to tolerate Pedialyte.
So all in all...Max is having one of his more "high maintenance" days...to put it lightly. :)
Since I have to stay awake anyway, I thought I would finally respond to everyone's emails, posts and phone calls. Thank you so very much for your concern and your interest. The number of people missing their Mighty Max "fix" is incredible. It's amazing how many people have fallen in love with him via the internet. He certainly is one loved, adored and cherished lil' boy!
The reason we haven't posted is two fold.
First, we have been quite busy with Max's ongoing stomach bug, numerous therapy/doctor appointments, and of course holiday preparations. (I was on the hunt for the perfect activity table for him and I finally found it...YAY! Soooo excited! But now it's taking all my willpower to wait until Christmas!)
Second, I have been wanting to do something different with our blog and I just needed to set some time aside to make that happen. I am setting up an "invitation only" site for our friends and family. I will keep you posted. In the meantime, send me your email address (amysmckinley@aol.com) if I haven't already invited you and you wish to be included. There are thousands of people who regularly read this blog now so the list can be a bit overwhelming. Sorry if I have overlooked your address. :)
Why do I want to make our site more private? Well, the journey of a special needs child and a single mom is an emotional roller coaster. When discussing the photos from our Christmas card exchange, I think a mom on our CHARGE listserv recently expressed it best..."all our CHARGE families have a similar wise, worn, loving look - the look of love cracked open, laid vulnerable and held with great reverence and gratitude."
It's that "cracked open, laid vulnerable" feeling that pushed me to start a more private blog. I only want our friends and family who love us and are genuinely interested in Max's well being to have access to our daily lives, our joys and sorrows, our accomplishments and frustrations...and all the in between.
Well I best run for now. We have clinic visits tomorrow at Children's (hoping they don't keep us overnight) and need to get us packed up and ready to go. I'll keep you posted on our new site. :)
Sunday, December 10, 2006
OBSTRUCTIVE SLEEP APNEA
Maxwell's sleep study confirmed our suspicions....he indeed has "obstructive sleep apnea." That basically means he has airway obstruction during sleep. Nothing too serious (it's pretty common), but it does require some intervention.
We have already implemented the first step, which is to increase his supplementary oxygen at night. Keeping him on a uniform, higher amount seems to help. But the bad news is that he won't be rid of O2 for quite some time. It's funny how many times I have thought we were nearing the end of the gigantic tanks, cannulas, tubing in our home...and then sure enough, the next week everything changes.
If the problem continues, we may try CPAP but I just don't think Maxwell will tolerate the mask very well. And another option that may help is a surgery to remove his tonsils and adenoids. This would hopefully enlarge his narrow airway.
I have scheduled another appointment with his ENT team for their thoughts. If they want to do that surgery, I am hoping to coordinate it with his urology surgery in March/April.
We have already implemented the first step, which is to increase his supplementary oxygen at night. Keeping him on a uniform, higher amount seems to help. But the bad news is that he won't be rid of O2 for quite some time. It's funny how many times I have thought we were nearing the end of the gigantic tanks, cannulas, tubing in our home...and then sure enough, the next week everything changes.
If the problem continues, we may try CPAP but I just don't think Maxwell will tolerate the mask very well. And another option that may help is a surgery to remove his tonsils and adenoids. This would hopefully enlarge his narrow airway.
I have scheduled another appointment with his ENT team for their thoughts. If they want to do that surgery, I am hoping to coordinate it with his urology surgery in March/April.
AN AMAZING FATHER
Maxwell's buddy, Evan, is one blessed little man! Not only does he have a wonderful, loving, proactive mommy (we love you Sarah!), but his daddy is also incredible! They have worked out a very unique situation and it is working quite well. While she works outside the home, he has given up his career to be Evan's full time caregiver/nurse/therapist.
What a team...what a family! We love all three of you and are so proud of the progress Evan is making with the support of such a dedicated team. :)
Here is Sarah's latest entry on Jeremy, Evan's daddy. Isn't that great?
What a team...what a family! We love all three of you and are so proud of the progress Evan is making with the support of such a dedicated team. :)
Here is Sarah's latest entry on Jeremy, Evan's daddy. Isn't that great?
Friday, December 08, 2006
COMING TO GET YOU MOMMY!
I am pretty attached to Mommy these days and if she leaves the room for even a minute, I will cry or try to find her. She loves our special connection, but says it is quite difficult to get things done while holding me all the time. I haven't quite learned how to hold on yet so I am a two hander for sure! I guess I need to learn some independence...but really, isn't that overrated?
Anyway, that's the cool thing about my new mobility! :) I can try and find her if she is nearby. This morning she had the nerve (ha ha) to leave me in my bedroom while she went to the bathroom to clean out my Gtube extension and bag. Well sure enough, I was quick on her trail.
Hey Mommy...here I come.
Anyway, that's the cool thing about my new mobility! :) I can try and find her if she is nearby. This morning she had the nerve (ha ha) to leave me in my bedroom while she went to the bathroom to clean out my Gtube extension and bag. Well sure enough, I was quick on her trail.
Hey Mommy...here I come.
On the move and getting closer...
Found you! Now I need a quick break. Perfect time for a downward dog pose.
Wednesday, December 06, 2006
HAPPY BIRTHDAY GRAMMY!
Sweet Grammy, we hope you have a super wonderful day! We love and miss you very much!
You are an incredibly important person in my life and I am blessed to have you as my Grammy. You have been with me for some truly exciting moments, haven't you? :) What about this...your birthday present this year is my promise to work really hard to reach my goals AND to avoid any long hospital stays. Sound good? :)
Have a wonderful day! Love you! :) Mighty Max
You are an incredibly important person in my life and I am blessed to have you as my Grammy. You have been with me for some truly exciting moments, haven't you? :) What about this...your birthday present this year is my promise to work really hard to reach my goals AND to avoid any long hospital stays. Sound good? :)
Have a wonderful day! Love you! :) Mighty Max
Tuesday, December 05, 2006
WAVES OF SADNESS
Yep, today was one of "those" days. One of those days when Max's developmental delays slap me across the face. One of those days that reality sets in and emotions take over. And then of course on one of "those" days, you start questioning your abilities as the parent/therapist/nurse and of course nothing ever feels good enough.
The emotional wave started at Max's OT appointment. The OT, PT and I were looking through catalogues to decide which swing would be best to assist with Max's vestibular issues. (This is a big problem for many CHARGErs.) And we aren't talking about some baby swing here...we are talking about a ceiling installation of a heavy duty therapy swing in the middle of our play room. (Thank you Kristy for hooking me up with a possible contractor...very thoughtful.)
I want to do everything possible to give him this much needed sensory input. His head shaking doesn't appear to be stopping anytime soon and will become even more noticeable and invasive as he gets older. This swing should also help with torso strength and coordination. Anyway, for some reason this discussion as well as Max's lack of strength with another very simple toy just threw me. And the eyes started to tear up...
Then we went to Target for some new therapy toys suggested by his OT. When I realized that I was buying toys in the 6 month range (simple cause and effect toys), it hit me again. My child is nearly 19 months old...yet developmentally we are nowhere even close.
Perhaps this wave of emotion really started last night. We had dinner at Eliz's house and played with Tom Tom and Jackson. As much as I absolutely love spending time with my amazing, adorable nephews, it also is such a harsh reality check. Thomas (same age as Max) is incredibly well developed. While Max is laying there on the floor mouthing a toy, Thomas is feeding the dogs...literally. Getting the scoop of food and bringing it over to the dog bowls. He is very impressive. And while I know, I know, I know I am not supposed to compare...sometimes you can't help it.
Anyway, enough of the pity party. Tonight Max and I had a good and happy night and I am excited to play with all of our new toys tomorrow. We made several homemade toys tonight too and I think they are going to work great. Plus we have several therapy appointments in the next few days, and I am looking forward to setting up new short term goals to give us that much needed encouragement.
The emotional wave started at Max's OT appointment. The OT, PT and I were looking through catalogues to decide which swing would be best to assist with Max's vestibular issues. (This is a big problem for many CHARGErs.) And we aren't talking about some baby swing here...we are talking about a ceiling installation of a heavy duty therapy swing in the middle of our play room. (Thank you Kristy for hooking me up with a possible contractor...very thoughtful.)
I want to do everything possible to give him this much needed sensory input. His head shaking doesn't appear to be stopping anytime soon and will become even more noticeable and invasive as he gets older. This swing should also help with torso strength and coordination. Anyway, for some reason this discussion as well as Max's lack of strength with another very simple toy just threw me. And the eyes started to tear up...
Then we went to Target for some new therapy toys suggested by his OT. When I realized that I was buying toys in the 6 month range (simple cause and effect toys), it hit me again. My child is nearly 19 months old...yet developmentally we are nowhere even close.
Perhaps this wave of emotion really started last night. We had dinner at Eliz's house and played with Tom Tom and Jackson. As much as I absolutely love spending time with my amazing, adorable nephews, it also is such a harsh reality check. Thomas (same age as Max) is incredibly well developed. While Max is laying there on the floor mouthing a toy, Thomas is feeding the dogs...literally. Getting the scoop of food and bringing it over to the dog bowls. He is very impressive. And while I know, I know, I know I am not supposed to compare...sometimes you can't help it.
Anyway, enough of the pity party. Tonight Max and I had a good and happy night and I am excited to play with all of our new toys tomorrow. We made several homemade toys tonight too and I think they are going to work great. Plus we have several therapy appointments in the next few days, and I am looking forward to setting up new short term goals to give us that much needed encouragement.
SLEEPY TIME PROTEST
Recently Maxwell has discovered the ability to kneel up to the crib railing to protest sleepy time...and of course I can never resist and always pick him up!
Nope, not ready for bed yet Mommy.
(Note Max's "rug burn" on his forehead...too many downward dog poses!)
Opps, I lost my grip and down I go.
Back up again...hmm, what should we do now Mom?
Oh I guess I am tired. Night night.
Nope, not ready for bed yet Mommy.(Note Max's "rug burn" on his forehead...too many downward dog poses!)
Opps, I lost my grip and down I go.
Back up again...hmm, what should we do now Mom?
Oh I guess I am tired. Night night. OUR VERY FAVORITE ORNAMENT!
We have a new favorite ornament courtesy of Miss Eva and her mommy! It's a hand signing "I love you" with Max's name on the front. How perfect is that?
We love, love, love it! It was the very first ornament hung on our Christmas tree, and it is front and center so that we can admire it often. :) Thank you Eva and Crystal!
We love, love, love it! It was the very first ornament hung on our Christmas tree, and it is front and center so that we can admire it often. :) Thank you Eva and Crystal!
Monday, December 04, 2006
VEGGIN' WITH BABY EINSTEIN
Mommy usually doesn't let me watch television, but we tried it out this weekend. I wasn't feeling very well and I had little energy to play. She pulled up my comfy, personalized "Maxwell" chair (love it Drew & Steph!) in front of our big TV and popped in a Baby Einstein video.
As you can see, I was pretty absorbed in the video.
(And how absolutely adorable do I look in my cozy sweatsuit???)
Wow, that is one BIG bunny.
As you can see, I was pretty absorbed in the video.(And how absolutely adorable do I look in my cozy sweatsuit???)
Wow, that is one BIG bunny.
Saturday, December 02, 2006
MY PURELL HAT
Still not feeling very well...I am quite the sad and grumpy little boy today.
Mommy *tried* to entertain me with lots of funny games but nothing seemed to do the trick for very long. Tonight she tried on this Purell hat and I must admit, it was pretty funny. I even gave her a little smile.
She thought I might like to wear the Purell hat too.
Mommy *tried* to entertain me with lots of funny games but nothing seemed to do the trick for very long. Tonight she tried on this Purell hat and I must admit, it was pretty funny. I even gave her a little smile.
She thought I might like to wear the Purell hat too.
Nope, I thought it was much better on her head.
C'mon Mom, give a sick kiddo a break. Nice try, but no more Purell hats today, ok?
*If you haven't tried the Purell wipes, they are absolutely fantastic...so handy. We go through them like crazy!
Friday, December 01, 2006
ANOTHER CHARGER
The link below is a story about Alex, a four month old CHARGEr...very similar medical conditions to Maxwell. He had a very close call yesterday. His grandmother is very active on our listserv and filled us in on the situation this morning.
I have often written about the risk of aspiration and that is exactly what happened here. Alex was being fed through his Gtube (no Nissen yet) and all was well. His mom left the room for a moment and returned to her baby turning blue. He was refluxing and then aspirating into his lungs. The surgeons are wanting to move forward with the Nissen once he is stabilized.
What a terribly frightening moment for Alex and his mom. My heart aches for them.
Please keep baby Alex in your prayers as he has been intubated and remains in critical condition.
www.mailtribune.com/archive/
2006/1130/local/stories/save_a_baby.htm
I have often written about the risk of aspiration and that is exactly what happened here. Alex was being fed through his Gtube (no Nissen yet) and all was well. His mom left the room for a moment and returned to her baby turning blue. He was refluxing and then aspirating into his lungs. The surgeons are wanting to move forward with the Nissen once he is stabilized.
What a terribly frightening moment for Alex and his mom. My heart aches for them.
Please keep baby Alex in your prayers as he has been intubated and remains in critical condition.
www.mailtribune.com/archive/
2006/1130/local/stories/save_a_baby.htm
