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!
Tuesday, December 26, 2006
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
Thursday, November 30, 2006
VERY ROUGH NIGHT
What a night, what a night.
Maxwell was crying and vomiting all night and most of the morning. And even now he still is not himself...lots of whimpering off and on.
Not sure what is going on with him. All week he has been having a difficult time sleeping peacefully. He is really congested and coughing a lot...that usually leads to waking up, gagging and then vomiting...and more vomiting.
Then if I do manage to get him back to sleep, I try and put his oxygen and oximeter probe back on him and he wakes him and the cycle starts all over again. No one wants to wake a sleeping baby, but it is necessary when your kiddo requires O2 and monitoring. That part is so frustrating! Last night I pretty much passed out for about an hour after I got him to sleep after one of his vomiting episodes. When I woke up, I realized I had forgotten to put his probe back on. I felt terrible. But fortunately he did have plenty of O2 on and I think all was ok.
I can't seem to get him to keep anything down last night or this morning. The surgeon said removing his stomach contents when he starts to vomit is the best option to avoid him aspirating. (We are doing everything possible to avoid redoing the Nissen surgery.) So I have been doing A LOT of that the past few nights. But the trick is you need to get it back in, otherwise his electrolytes will be all off. This morning I tried to give him just one 10 ml syringe and he immediately vomited it back up. The past few days his room has been filled with random amounts of stomach content syringes. Gross, I know...but that's our world some days! :)
This morning nothing would ease his discomfort so I gave him a bath (also to remove the vomit odor from the lil' man!) and that helped for awhile. But sure enough, a few minutes later another vomit.
I'm going to take him to the doctor today, but I'm not sure what he can do for us at this point. I certainly don't want him in the hospital.
As soon as we get a call back from him (hopefully he can see Maxwell soon), we will venture on the roads for the first time in four days. My brother in law (thanks Jim) took care of my sidewalk and driveway yesterday, and now I am thawing out my car. (Over 18 inches!) I'm a little nervous about the ice on the roads, but I think it should be ok.
I am HOPING our nurse can make it tonight. It's been four nights of little sleep and I am craving some good ZZZ's.
Maxwell was crying and vomiting all night and most of the morning. And even now he still is not himself...lots of whimpering off and on.
Not sure what is going on with him. All week he has been having a difficult time sleeping peacefully. He is really congested and coughing a lot...that usually leads to waking up, gagging and then vomiting...and more vomiting.
Then if I do manage to get him back to sleep, I try and put his oxygen and oximeter probe back on him and he wakes him and the cycle starts all over again. No one wants to wake a sleeping baby, but it is necessary when your kiddo requires O2 and monitoring. That part is so frustrating! Last night I pretty much passed out for about an hour after I got him to sleep after one of his vomiting episodes. When I woke up, I realized I had forgotten to put his probe back on. I felt terrible. But fortunately he did have plenty of O2 on and I think all was ok.
I can't seem to get him to keep anything down last night or this morning. The surgeon said removing his stomach contents when he starts to vomit is the best option to avoid him aspirating. (We are doing everything possible to avoid redoing the Nissen surgery.) So I have been doing A LOT of that the past few nights. But the trick is you need to get it back in, otherwise his electrolytes will be all off. This morning I tried to give him just one 10 ml syringe and he immediately vomited it back up. The past few days his room has been filled with random amounts of stomach content syringes. Gross, I know...but that's our world some days! :)
This morning nothing would ease his discomfort so I gave him a bath (also to remove the vomit odor from the lil' man!) and that helped for awhile. But sure enough, a few minutes later another vomit.
I'm going to take him to the doctor today, but I'm not sure what he can do for us at this point. I certainly don't want him in the hospital.
As soon as we get a call back from him (hopefully he can see Maxwell soon), we will venture on the roads for the first time in four days. My brother in law (thanks Jim) took care of my sidewalk and driveway yesterday, and now I am thawing out my car. (Over 18 inches!) I'm a little nervous about the ice on the roads, but I think it should be ok.
I am HOPING our nurse can make it tonight. It's been four nights of little sleep and I am craving some good ZZZ's.
Tuesday, November 28, 2006
EXTRA COSTS + INABILITY TO WORK = POVERTY AND DEBT
I received this latest information in our ARC Newsletter.
In addition to the daily physical and emotional struggles that a special needs family endures, the financial burden can be simply overwhelming. The extra expenses and the need for a full time caregiver, who handles the medical and developmental issues, certainly have a major financial impact.
I must admit these statistics frighten me as I look ahead to the future. I imagine the financial statistics for single parent households with a special needs child are much worse. I know I will make it work somehow, but it certainly will be an uphill battle!
- It costs 3 times as much to raise a child with a disability compared to a child without a disability.
- Only 16% of mothers who have a child with a disability work (full or part time) compared to 61% of all mothers.
Caregivers are unable to work due to intensive care requirements of their child. Appropriate, trained childcare is lacking or cost prohibitive. - 55% of families who have a child with a disability live in poverty.
- 84% of families who have a child with a disability are in debt (compared to 47% of all households).
* Statistics provided by the WA State Department of Health and American Association of People with Disabilities
CONGRATS DYLAN AND EVA!!!
Two of Maxwell's friends have great news! :)
Eva, a sweet 19 month old girl with CHARGE, has made such improvement with her feeding that she may have her Gtube removed early next year! WOW EVA! Way to go! :)
Dylan, a super handsome and VERY charming lil' man with Down's Syndrome, had an echocardiogram on Monday and got some incredibly fantastic news!!! No surgery in the near future! WOO HOO! Dylan had open heart surgery last year when he was four months old (that is when we met his family) and there were still some remaining issues that needed monitoring. However, those issues are stable and he doesn't even need to see his cardiologist for another year! WOW! WOW! WOW! This boy is absolutely amazing and we just love him and his family!
Eva, a sweet 19 month old girl with CHARGE, has made such improvement with her feeding that she may have her Gtube removed early next year! WOW EVA! Way to go! :)
Dylan, a super handsome and VERY charming lil' man with Down's Syndrome, had an echocardiogram on Monday and got some incredibly fantastic news!!! No surgery in the near future! WOO HOO! Dylan had open heart surgery last year when he was four months old (that is when we met his family) and there were still some remaining issues that needed monitoring. However, those issues are stable and he doesn't even need to see his cardiologist for another year! WOW! WOW! WOW! This boy is absolutely amazing and we just love him and his family!
SUPER CUTE PHOTOS AND BIG ACCOMPLISHMENT!
These photos are from last week (notice the scenery change outside)....forgot to post with Thanksgiving and all. So much to report about Maxwell that sometimes I forget some pretty exciting moments! :)
Max decided to stand (on his own!) in his bed! What a shock that was to see...so exciting! And also a good reminder to move down his mattress, which I did that afternoon! This was a major accomplishment for Maxwell in so many ways. Go Max Go!
Yesterday, he took this accomplishment a step further and got into the standing position all on his own (with the help of his favorite block toy). AMAZING! He was sitting and then I looked over a few minutes later and he was standing. He did it all by himself! :) Then he managed to sit down again WITHOUT falling. That's another major accomplishment. Usually he falls and takes down the block with him.
Wow, there's a whole world out there. Wonder if I can climb through this window.
Oh hey there Mommy, no I wasn't planning anything. Just standing here observing...
Max decided to stand (on his own!) in his bed! What a shock that was to see...so exciting! And also a good reminder to move down his mattress, which I did that afternoon! This was a major accomplishment for Maxwell in so many ways. Go Max Go!
Yesterday, he took this accomplishment a step further and got into the standing position all on his own (with the help of his favorite block toy). AMAZING! He was sitting and then I looked over a few minutes later and he was standing. He did it all by himself! :) Then he managed to sit down again WITHOUT falling. That's another major accomplishment. Usually he falls and takes down the block with him.
Wow, there's a whole world out there. Wonder if I can climb through this window.
Oh hey there Mommy, no I wasn't planning anything. Just standing here observing...
ANOTHER SNOW DAY
Another beautiful but absolutely freezing snow day in Bellingham... www.bellinghamherald.comThe temperature this morning was only nine degrees...yikes! Unfortunately these low temps are creating major ice issues for our area. We are definitely not venturing outside anytime soon. More therapy appointments cancelled for today but we are making up for it indoors. Playing lots of "la la la" and "pat a cake" (thanks Jeremy for the idea!) and "where's the dog" games.
Off to try more standing at the glass door. At least Max can admire the snow from indoors (and work on his leg strength at the same time)!
Monday, November 27, 2006
OOPS! FORGOT ABOUT YOUR MEDICAL ISSUES THERE FOR A MOMENT!
Tonight Maxwell and I were playing a game, and every so often it involved me rolling backwards with him on my stomach. Well he just loved it...and all was great. We were both giggling and having a ball. He just loves, loves, loves to roll around, tickle and play.
But then oops, sorry Max. Mommy forgot about the failed Nissen...here comes the formula through your nose. Off to suction land again.
But then oops, sorry Max. Mommy forgot about the failed Nissen...here comes the formula through your nose. Off to suction land again.
"WHERE'S MOMMA?" "WHERE'S THE DOG?"
In our house, you hear these questions over and over again...and again and again...oh and yes, again! I have been trying to work with Maxwell on identifying objects and with his hearing loss and developmental delay, it has been a work in progress!
Well I think he is pretty darn close to knowing both. So exciting! One night he will totally get it but then the next morning he will need reminders. But that's ok...every day he answers more and more correctly.
His speech therapist was very impressed last week. She said she was even more impressed that he could tell I was asking him a question and he was trying to answer it every time. He might not always have the right answer but cognitively he is "getting it" about questions and answers.
For the past few weeks he would look at the correct answer (me or Shakespeare), but I have taken it a step further recently with encouraging him to touch the correct answer as well.
Last night he was so excited to answer the "where's momma" question correctly that he would throw his arms around me! It was such a fun and loving moment...I was thrilled! (But then this morning he patted the dog when I asked him the same question!)
Practice makes perfect! :) I love this progress!!!
Well I think he is pretty darn close to knowing both. So exciting! One night he will totally get it but then the next morning he will need reminders. But that's ok...every day he answers more and more correctly.
His speech therapist was very impressed last week. She said she was even more impressed that he could tell I was asking him a question and he was trying to answer it every time. He might not always have the right answer but cognitively he is "getting it" about questions and answers.
For the past few weeks he would look at the correct answer (me or Shakespeare), but I have taken it a step further recently with encouraging him to touch the correct answer as well.
Last night he was so excited to answer the "where's momma" question correctly that he would throw his arms around me! It was such a fun and loving moment...I was thrilled! (But then this morning he patted the dog when I asked him the same question!)
Practice makes perfect! :) I love this progress!!!
Sunday, November 26, 2006
SNOWED IN!
What a beautiful, crazy day in Bellingham! We are completely covered in gorgeous, DEEP white snow! I believe the latest count is about 10-12 inches...that is A LOT for this area! It rarely snows here. Guess God wanted my first snowfall to be memorable! :)
This is the view earlier in the day from our front door.
My cousins came over to build a snowman and play in my backyard. Cousin Thomas LOVES the snow!
Me? Not so much. Ok, not at all.
I think it is safe to say our playgroup and therapy appointments will be cancelled tomorrow. Our nurse can't make it out tonight either. Hope Mommy has some fun activities planned for us at home!
This is the view earlier in the day from our front door.
My cousins came over to build a snowman and play in my backyard. Cousin Thomas LOVES the snow!
Me? Not so much. Ok, not at all.I think it is safe to say our playgroup and therapy appointments will be cancelled tomorrow. Our nurse can't make it out tonight either. Hope Mommy has some fun activities planned for us at home!
Saturday, November 25, 2006
ROBOT FAMILY?
I'm not sure if I can adequately describe how bizarre this moment was, but I'll try.
So I was all wired up with my halter monitor and sleeping in the room with Maxwell. (Our night nurse took a holiday vacation, which she definitely deserves!) Mr. Max was having a very difficult time sleeping (which has been the case all week due to various health issues) and I tried rocking him, playing with him...anything to ease his discomfort and make him happy.
He was definitely tired but his stomach was giving him a lot of problems. Finally we laid down together in my bed (next to his crib) hoping that this would help him relax. That sounds easy to most parents, but when your baby is hooked up to three different machines, it can be a little cumbersome.
Then add in my ten wires and monitor. We must have been quite the sight. Then Max spots my wires and starts pulling at them. Trying to keep a kiddo away from his AND your wires is quite interesting! The most comical part was that finally we managed to take a brief "nap" at 3 in the morning, and I wake up to our wires being all tangled together. Robot Mommy and Robot Baby!
Fortunately Max had a slightly easier night yesterday AND I was able to finally remove my halter monitor (48 hours). When I was ripping the tape off (yikes!!!), I gained an entire new appreciation for Maxwell!
So I was all wired up with my halter monitor and sleeping in the room with Maxwell. (Our night nurse took a holiday vacation, which she definitely deserves!) Mr. Max was having a very difficult time sleeping (which has been the case all week due to various health issues) and I tried rocking him, playing with him...anything to ease his discomfort and make him happy.
He was definitely tired but his stomach was giving him a lot of problems. Finally we laid down together in my bed (next to his crib) hoping that this would help him relax. That sounds easy to most parents, but when your baby is hooked up to three different machines, it can be a little cumbersome.
Then add in my ten wires and monitor. We must have been quite the sight. Then Max spots my wires and starts pulling at them. Trying to keep a kiddo away from his AND your wires is quite interesting! The most comical part was that finally we managed to take a brief "nap" at 3 in the morning, and I wake up to our wires being all tangled together. Robot Mommy and Robot Baby!
Fortunately Max had a slightly easier night yesterday AND I was able to finally remove my halter monitor (48 hours). When I was ripping the tape off (yikes!!!), I gained an entire new appreciation for Maxwell!
Friday, November 24, 2006
TWO NEW BABIES!
My friend, Wade and Brandy, welcomed Avery into the world this past week. Congratulations to all three of you...and Riley the dog too of course!
And today we welcomed the very first GIRL baby into the McKinley family. The proud parents are my brother David and his wife Meredith. No name yet...perhaps Maxwella? :)
We are so happy that both deliveries went smoothly and the babies are very healthy. Congratulations everyone!
And today we welcomed the very first GIRL baby into the McKinley family. The proud parents are my brother David and his wife Meredith. No name yet...perhaps Maxwella? :)
We are so happy that both deliveries went smoothly and the babies are very healthy. Congratulations everyone!
HAPPY THANKSGIVING
Thanksgiving was lots of fun! We went to a friend's house for dinner and everyone was so impressed with all my progress.
I crawled (commando style) around for everyone and then I even did a few crawls on my hands and knees with my head up! WOW! I got a lot of praise for that!
Last year I was in the hospital recovering from heart surgery. Mom, Grammy, Uncle Jim, Aunt Eliz, and my cousins had turkey dinner at the Ronald McDonald house. They had to eat in their room because some of them were sick and they couldn't risk getting any of the other families sick. It was an interesting holiday last year, that's for sure.
We have decided for now on, we will celebrate holidays OUT of the hospital. It's much better being at home with friends and family.
Mommy and I are very thankful this year for the wonderful new friends we have made locally and across the country. Your love and support have helped us tremendously through some very difficult times.
We are also incredibly thankful for the amazing progress I have made in recent months and for the dedication of my fantastic therapy, nursing and medical team. With everyone's help, I am becoming the amazing, adorable, wonderful, cute, funny, happy and determined lil' man that I was destined to be!
And who knows, maybe next year I can even try some turkey. Now wouldn't that be exciting!?!
I crawled (commando style) around for everyone and then I even did a few crawls on my hands and knees with my head up! WOW! I got a lot of praise for that!
Last year I was in the hospital recovering from heart surgery. Mom, Grammy, Uncle Jim, Aunt Eliz, and my cousins had turkey dinner at the Ronald McDonald house. They had to eat in their room because some of them were sick and they couldn't risk getting any of the other families sick. It was an interesting holiday last year, that's for sure.
We have decided for now on, we will celebrate holidays OUT of the hospital. It's much better being at home with friends and family.
Mommy and I are very thankful this year for the wonderful new friends we have made locally and across the country. Your love and support have helped us tremendously through some very difficult times.
We are also incredibly thankful for the amazing progress I have made in recent months and for the dedication of my fantastic therapy, nursing and medical team. With everyone's help, I am becoming the amazing, adorable, wonderful, cute, funny, happy and determined lil' man that I was destined to be!
And who knows, maybe next year I can even try some turkey. Now wouldn't that be exciting!?!
MEETING SANTA!
I finally got to meet Santa...wow! He posed for photos with all of us special kiddos at the Festival of Trees. We were so excited! :)
He's quite a different looking guy, I couldn't keep my eyes off of him! He and Mommy kept trying to get me to turn around for the photo, but nope...I just wanted to check out this bearded fellow in the funny red suit!
Wonder if this guy would appreciate the famous "Max Attack?" That beard could be lots of fun to pull! :)
Oh hi Mom, have you met my new friend Santa?
Now back to checking out this guy...
Ok now I'm done.
My super wonderful cousin, Jackson, came with us to the Festival of Trees. Isn't he soooo handsome? I just love my cousins.
He's quite a different looking guy, I couldn't keep my eyes off of him! He and Mommy kept trying to get me to turn around for the photo, but nope...I just wanted to check out this bearded fellow in the funny red suit!
Wonder if this guy would appreciate the famous "Max Attack?" That beard could be lots of fun to pull! :)
Oh hi Mom, have you met my new friend Santa?
Now back to checking out this guy...
Ok now I'm done.
My super wonderful cousin, Jackson, came with us to the Festival of Trees. Isn't he soooo handsome? I just love my cousins.
Wednesday, November 22, 2006
FESTIVAL OF TREES
Tuesday was the annual Children's Hospital "Festival of Trees" celebration at the fancy Fairmont Olympic Hotel in Seattle. Wow, what a night! They had 25 uniquely decorated, absolutely gorgeous Christmas trees, and each one honors a courageous patient of the hospital. Several months ago we learned that I would be honored, and of course Mommy and I were thrilled. It was so exciting to see it all when we arrived. :)
We met many other wonderful families and learned about their challenging journeys. So many sad, yet incredibly inspiring stories...it was quite emotional. Many people stopped to ask Mommy about my story. She always is proud to report how much progress I have made!
These trees are part of an annual fundraiser for the hospital - each tree is expected to sell for $10,000. (My friend Dylan's tree sold first...way to go Dylan!) For more information on the fundraiser and to see the incredible trees, visit http://seasonoflight.seattlechildrens.org/festival_of_trees.asp.
Check out #19 (my tree). It's named "Alabaster Angels -- Iridescent white and silver ornaments and elegant white angels decorate this glitzy tree."
Mommy and I waving hello to my fan club. That's my tree behind me! Isn't it beautiful? :)
Here's an even better view of my tree.
Oh and notice my wave? That is definitely my favorite trick these days! :)
Each tree had a photo and story of the special child being honored.
Might not be in the mood to smile, but I am still darn cute.
Me and Mommy in front of the "Grand Tree"
And last but not least, I finally got to meet the famous Mr. Phil Smart. Mommy has told me all about him and she was excited to introduce us to one another.
Phil Smart is an incredibly important and special man at the hospital. For decades, he has been a regular volunteer (first male volunteer there ever!) and fundraising advocate for us special kiddos and our "Miracle House." His book and video have truly inspired Mommy and got her through a very difficult time in the hospital.
We are checking each other out and deciding who the more amazing man is...him or me? hee hee!
We met many other wonderful families and learned about their challenging journeys. So many sad, yet incredibly inspiring stories...it was quite emotional. Many people stopped to ask Mommy about my story. She always is proud to report how much progress I have made!
These trees are part of an annual fundraiser for the hospital - each tree is expected to sell for $10,000. (My friend Dylan's tree sold first...way to go Dylan!) For more information on the fundraiser and to see the incredible trees, visit http://seasonoflight.seattlechildrens.org/festival_of_trees.asp.
Check out #19 (my tree). It's named "Alabaster Angels -- Iridescent white and silver ornaments and elegant white angels decorate this glitzy tree."
Mommy and I waving hello to my fan club. That's my tree behind me! Isn't it beautiful? :)
Here's an even better view of my tree. Oh and notice my wave? That is definitely my favorite trick these days! :)
Each tree had a photo and story of the special child being honored.
Might not be in the mood to smile, but I am still darn cute. 
Mommy's absolute favorite tree! :)
Titled "Man's Best Friend," it was covered with adorable doggy items. She loved, loved, loved it!
Me and Mommy in front of the "Grand Tree"And last but not least, I finally got to meet the famous Mr. Phil Smart. Mommy has told me all about him and she was excited to introduce us to one another.
Phil Smart is an incredibly important and special man at the hospital. For decades, he has been a regular volunteer (first male volunteer there ever!) and fundraising advocate for us special kiddos and our "Miracle House." His book and video have truly inspired Mommy and got her through a very difficult time in the hospital.
We are checking each other out and deciding who the more amazing man is...him or me? hee hee!
Monday, November 20, 2006
PRAYERS NEEDED
Two precious CHARGE kiddos are having lots of problems right now and they definitely need our prayers.
JD, a little boy in Texas (same age as Max), almost passed away today due to respiratory complications. Fortunately his parents were quick to react and got him helicoptered to the local hospital immediately. And another little girl, Meagan, has been recovering from her cochlear implant surgery and got very sick and extremely dehydrated. Now she is back in the hospital.
This CHARGE disorder can be so frustrating at times...it impacts our children in so many ways and makes them vulnerable to so many illnesses. I am extremely emotional tonight about all of this, and it just breaks my heart how many families and children are suffering.
Earlier this week there was intense discussion among a few of the adult CHARGErs (on our group list) and how difficult their daily lives are...medically, developmentally, socially and emotionally. It saddens me to know that there will always be new challenges for Maxwell...once we surpass one, we have another ten more waiting for us. Even though I know this from researching CHARGE and the long term challenges, personal stories hit so much closer and make it all more real to me.
I best get to bed or I will get even more emotional about all of this. JD and Meagan's stories both really hit me hard and were frightening to read.
Please send your prayers of love and comfort to these two families and everyone in our wonderful CHARGE community. They are amazing people. Thank you.
JD, a little boy in Texas (same age as Max), almost passed away today due to respiratory complications. Fortunately his parents were quick to react and got him helicoptered to the local hospital immediately. And another little girl, Meagan, has been recovering from her cochlear implant surgery and got very sick and extremely dehydrated. Now she is back in the hospital.
This CHARGE disorder can be so frustrating at times...it impacts our children in so many ways and makes them vulnerable to so many illnesses. I am extremely emotional tonight about all of this, and it just breaks my heart how many families and children are suffering.
Earlier this week there was intense discussion among a few of the adult CHARGErs (on our group list) and how difficult their daily lives are...medically, developmentally, socially and emotionally. It saddens me to know that there will always be new challenges for Maxwell...once we surpass one, we have another ten more waiting for us. Even though I know this from researching CHARGE and the long term challenges, personal stories hit so much closer and make it all more real to me.
I best get to bed or I will get even more emotional about all of this. JD and Meagan's stories both really hit me hard and were frightening to read.
Please send your prayers of love and comfort to these two families and everyone in our wonderful CHARGE community. They are amazing people. Thank you.
ONE YEAR SINCE HEART SURGERY
Tomorrow (11/21) is a special day...one year since Maxwell's open heart surgery to repair his Tetralogy of Fallot (serious heart defect including ASD and VSD).
This surgery saved his life and transformed Maxwell into a MUCH stronger, healthier baby. Before the surgery, Max's body was really struggling with nearly every issue...from breathing in the 100s ALL the time to heartrates in the 200s. He was expected to require a trachestomy and was dealing with serious neurological "twits." Afterwards, he was an entirely different lil' man. It was incredible, absolutely incredible.
I remember feeling such a sense of peace going into that surgery. I just knew it was going to be successful. Perhaps I was calm because he had already endured so many surgeries or perhaps I was in denial. But I truly think my mommy instinct told me everything would be ok. His cardiac team was so impressed with him...they said they wished all their cardiac kiddos recovered as well as he did! :)
Here's a link to that post...pretty amazing change, isn't it???
http://maxupdate.blogspot.com/2005_11_20_maxupdate_archive.html
This surgery saved his life and transformed Maxwell into a MUCH stronger, healthier baby. Before the surgery, Max's body was really struggling with nearly every issue...from breathing in the 100s ALL the time to heartrates in the 200s. He was expected to require a trachestomy and was dealing with serious neurological "twits." Afterwards, he was an entirely different lil' man. It was incredible, absolutely incredible.
I remember feeling such a sense of peace going into that surgery. I just knew it was going to be successful. Perhaps I was calm because he had already endured so many surgeries or perhaps I was in denial. But I truly think my mommy instinct told me everything would be ok. His cardiac team was so impressed with him...they said they wished all their cardiac kiddos recovered as well as he did! :)
Here's a link to that post...pretty amazing change, isn't it???
http://maxupdate.blogspot.com/2005_11_20_maxupdate_archive.html
Friday, November 17, 2006
ANOTHER DAY, ANOTHER TEST...SUCH IS THE LIFE OF MIGHTY MAX!
We left Seattle early this morning (5:30 am) so we were back in Bellingham bright and early. Ok Mom wasn't too "bright", she didn't manage much sleep during my sleep study. (I guess you could say that was my fault, I woke up crying several times...those wires were a little overwhelming and scary.)
The study was very impressive. They study literally EVERYTHING going on...from CO2 and O2 levels to brain patterns and heart rates. Mom is really looking forward to the official report.
The RT said that typically a report isn't ready for a month (several people are involved in the review and orders), but in cases where something might be wrong, you find out sooner. She then said we were in the latter category. Hmm...
We are not overly worried, but sure would like to know what we will do to address my sleep apnea, need for oxygen, etc. Mom will keep you posted.
Lady, what are you doing to me?
Mommy, this really isn't all that fun.
Don't make fun of my wire ponytail.
With lots of Mommy cuddling (and some Grey's Anatomy viewing!), I finally managed to fall asleep...wires and all.
The morning after...
The study was very impressive. They study literally EVERYTHING going on...from CO2 and O2 levels to brain patterns and heart rates. Mom is really looking forward to the official report.
The RT said that typically a report isn't ready for a month (several people are involved in the review and orders), but in cases where something might be wrong, you find out sooner. She then said we were in the latter category. Hmm...
We are not overly worried, but sure would like to know what we will do to address my sleep apnea, need for oxygen, etc. Mom will keep you posted.
Lady, what are you doing to me?
Mommy, this really isn't all that fun.
Don't make fun of my wire ponytail.
With lots of Mommy cuddling (and some Grey's Anatomy viewing!), I finally managed to fall asleep...wires and all.
The morning after...
Thursday, November 16, 2006
FUNNY STORIES
I have a few quick stories to share that are quite funny...enjoy! :)
Social Butterfly
Max and I went to Lowe's yesterday and had such a great time. He LOVES lights so he stared at the ceiling for the most part. :) We also played peek a boo in the aisles...it's amazing the therapy and games you can do even when shopping!
When we were in the checkout line, a woman waved to Maxwell and HE WAVED RIGHT BACK!!! Sooooo cool! I of course squealed with delight, which caused some attention and then everyone started waving at our own lil' social butterfly. It was wonderful!
"Please stop giggling Maxwell, your stomach contents are spilling out..."
Yep, that is just not something I ever thought I would be saying to my son! He loves, loves, loves to play with his Gtube and I always have to keep a close eye on it. Even when he is dressed, he loves to twirl it and pull on it. Between that and his hearing aide, he sure keeps me busy keeping all of his "attachments" in the right place! :)
So the other day his tube was getting kind of loose and he managed to pull it out once. I fixed it (temporarily) and then after his bath, I am changing him and he pulls it out again. Well he and I have a tickling game during diaper changes and after his bath, and he thought that is what I was doing when I tried to put the tube back in. He just kept giggling and giggling and I could not get it back in. It was a little frustrating but VERY funny at the same time! Would have been great to have on video...the life of a Gtube kiddo! :) I love how happy he is...that is what is most important to me. He definitely is one happy...and tricky...lil' boy!
"Nope, that's my son's EKG"
So I was referred to a pulmonogist earlier this week who wants me to have a series of heart and lung tests. In addition to my breathing, they are noticing some odd beat patterns and slow rhythm with my heart. (I am not too worried, I know it is the stress causing these problems but I guess it's better to be safe than sorry.)
She was reviewing my EKG and said she was concerned with my bradycardia. Of course, I immediately assumed she was looking at the wrong chart (even though this is a completely different hospital and doctor!) and said, "Oh no, I'm sorry...that's my son's EKG you are looking at. He is the one with the bradycardia issues." She looked at me like I was crazy (she isn't aware of Maxwell's medical status) and said no, your name is right here on the EKG. And for those of you who know my fiesty spirit, I of course continued to disagree with her and declare that was Max's EKG and they probably just have my name on it because I am his mother. It was quite the moment. :)
Like dog, like son, like mother...
My sweet dog Lucy had to wear halter monitors to check her heart status many times. Maxwell has endured countless monitor sessions...and now guess what? Mommy's turn! Yep, next week I have to do the silly ol' test to see what is going on with my heart and breathing. I couldn't help but chuckle when they ordered that test.
Better run...gotta start packing up all of Max's equipment for our trip to Seattle. I'm sure we will have many more funny stories after the next few days. :)
Social Butterfly
Max and I went to Lowe's yesterday and had such a great time. He LOVES lights so he stared at the ceiling for the most part. :) We also played peek a boo in the aisles...it's amazing the therapy and games you can do even when shopping!
When we were in the checkout line, a woman waved to Maxwell and HE WAVED RIGHT BACK!!! Sooooo cool! I of course squealed with delight, which caused some attention and then everyone started waving at our own lil' social butterfly. It was wonderful!
"Please stop giggling Maxwell, your stomach contents are spilling out..."
Yep, that is just not something I ever thought I would be saying to my son! He loves, loves, loves to play with his Gtube and I always have to keep a close eye on it. Even when he is dressed, he loves to twirl it and pull on it. Between that and his hearing aide, he sure keeps me busy keeping all of his "attachments" in the right place! :)
So the other day his tube was getting kind of loose and he managed to pull it out once. I fixed it (temporarily) and then after his bath, I am changing him and he pulls it out again. Well he and I have a tickling game during diaper changes and after his bath, and he thought that is what I was doing when I tried to put the tube back in. He just kept giggling and giggling and I could not get it back in. It was a little frustrating but VERY funny at the same time! Would have been great to have on video...the life of a Gtube kiddo! :) I love how happy he is...that is what is most important to me. He definitely is one happy...and tricky...lil' boy!
"Nope, that's my son's EKG"
So I was referred to a pulmonogist earlier this week who wants me to have a series of heart and lung tests. In addition to my breathing, they are noticing some odd beat patterns and slow rhythm with my heart. (I am not too worried, I know it is the stress causing these problems but I guess it's better to be safe than sorry.)
She was reviewing my EKG and said she was concerned with my bradycardia. Of course, I immediately assumed she was looking at the wrong chart (even though this is a completely different hospital and doctor!) and said, "Oh no, I'm sorry...that's my son's EKG you are looking at. He is the one with the bradycardia issues." She looked at me like I was crazy (she isn't aware of Maxwell's medical status) and said no, your name is right here on the EKG. And for those of you who know my fiesty spirit, I of course continued to disagree with her and declare that was Max's EKG and they probably just have my name on it because I am his mother. It was quite the moment. :)
Like dog, like son, like mother...
My sweet dog Lucy had to wear halter monitors to check her heart status many times. Maxwell has endured countless monitor sessions...and now guess what? Mommy's turn! Yep, next week I have to do the silly ol' test to see what is going on with my heart and breathing. I couldn't help but chuckle when they ordered that test.
Better run...gotta start packing up all of Max's equipment for our trip to Seattle. I'm sure we will have many more funny stories after the next few days. :)
SLEEP STUDY
On Thursday, Maxwell and I head down to Seattle for a sleep study. We will be there from 7 pm until 7 am the following day. His pulmonogist wants him evaluated based on some apnea issues and his constant need for oxygen during sleep. I will sleep (or at least nap a little) in the room with him.
If there are any significant problems, I imagine they will try CPAP to study any improvement. Not looking forward to that, but if it will help...sure. Max just moves around in his sleep so much, I don't know how it would possibly stay on. I guess we'll see!
If there are any significant problems, I imagine they will try CPAP to study any improvement. Not looking forward to that, but if it will help...sure. Max just moves around in his sleep so much, I don't know how it would possibly stay on. I guess we'll see!
BABIES, BABIES, BABIES EVERYWHERE!
It seems like all of my friends are having babies these days...very exciting times for everyone!
Today two of my very favorite people, Steph and Drew, welcomed their little girl into the world...sooooo wonderful! (Name is still to be determined)
In the next few days, David and Meredith (brother and sister in law) will be delivering a little girl as well! First granddaughter in the family! :)
And a sorority sister and longtime friend of mine, Brandy (and husband Wade) are expanding their family too...baby to arrive in the next month or so. (They didn't find out the sex.)
Last but not least, a belated congratulations to Rebecca and Randy and their beautiful new son, Carson!
Mighty Max and I are thrilled for all of you! :)
Today two of my very favorite people, Steph and Drew, welcomed their little girl into the world...sooooo wonderful! (Name is still to be determined)
In the next few days, David and Meredith (brother and sister in law) will be delivering a little girl as well! First granddaughter in the family! :)
And a sorority sister and longtime friend of mine, Brandy (and husband Wade) are expanding their family too...baby to arrive in the next month or so. (They didn't find out the sex.)
Last but not least, a belated congratulations to Rebecca and Randy and their beautiful new son, Carson!
Mighty Max and I are thrilled for all of you! :)
Wednesday, November 15, 2006
PRAYERS FOR EVAN AND MEAGAN
Two more CHARGErs are having surgeries this week and I ask you to keep them both in your prayers.
Evan is a tough lil' guy who is having his soft cleft palate fixed tomorrow. They are hoping this is his last surgery for awhile.
Meagan is a sweet two year old who had surgery today to receive her cochlear implant. Their family is very excited for her to experience some sound...especially so she can communicate with her twin sister (who is healthy/typical).
Also, Ben is having some difficulties with post surgery (cochear implant) and Maya is in the hospital with some respiratory issues.
And last but not least, Max is almost off his latest round of steroids and antibiotics and feeling much better. YAY! (Hopefully soon his steroid craziness will wear off, but I must say it is quite funny!) We went to the doctor again earlier this week and he felt much more comfortable with Maxwell's respiratory status. Avoided another hospital stay...woo hoo!
Soooo...prayers all around in the CHARGE commujnity. These kiddos certainly keep us on our toes!
Evan is a tough lil' guy who is having his soft cleft palate fixed tomorrow. They are hoping this is his last surgery for awhile.
Meagan is a sweet two year old who had surgery today to receive her cochlear implant. Their family is very excited for her to experience some sound...especially so she can communicate with her twin sister (who is healthy/typical).
Also, Ben is having some difficulties with post surgery (cochear implant) and Maya is in the hospital with some respiratory issues.
And last but not least, Max is almost off his latest round of steroids and antibiotics and feeling much better. YAY! (Hopefully soon his steroid craziness will wear off, but I must say it is quite funny!) We went to the doctor again earlier this week and he felt much more comfortable with Maxwell's respiratory status. Avoided another hospital stay...woo hoo!
Soooo...prayers all around in the CHARGE commujnity. These kiddos certainly keep us on our toes!
Tuesday, November 14, 2006
SWINGING AND WAVING
Look at me swinging!That's Jill, my physical therapist, behind me! We had such a great session! This swinging helps my vestibular system and also encourages torso strength. It took me months to accept touching the rope (sensory issues), but now I think nothing of it! :)
I can wave to Mom and swing at the same time!
Hello again Mommy! This waving thing is very cool!
PREMATURITY AWARENESS MONTH
November is "Prematurity Awareness Month," and I think it is an important time for us to note what we can do to help with this effort.
I know for me I learned about preterm labor the hard way...
My water broke at 28 weeks and I was immediately helicoptered down to Seattle. They were expecting me to give birth that night or at best within a few days. It was one of the most frightening times in my life...I had no idea what was happening or what to expect minute to minute.
With the assistance of very strong medications and strict hospital bed rest, Mighty Maxwell managed to stay "inside" until he was 32 weeks. The doctors were thrilled that we were able to sustain this period of time with no infections or serious issues for me or Max. He isn't a true "32 weeker" because the stress of low amniotic fluid didn't allow for complete development of his lungs and Max now suffers from chronic lung disease.
Unfortunately I did not recognize the signs of preterm labor. I had just moved to Bellingham from WV and attended my first two lamaze classes. I was experiencing backpain, cramping and spotting but just assumed that was part of pregnancy. However, Elizabeth thought something might be up so she took me to the hospital. I remember being in a room and looking over at a poster that listed the signs of preterm labor. We read them and I literally had each and every one. A few minutes later, my water ruptured...and the medical team rushed in. What a surreal moment that we will both never forget.
Who knows if I could have prevented Max's early arrival...perhaps by a few weeks (?) if I had known the warning signs. In his case, his arrival probably was because of his choanal atresia. Many babies with this birth defect arrive early because they cannot swallow the amniotic fluid. But in other cases with "typical" babies, knowing the warning signs of preterm labor may save a child's life.
We would appreciate your support of the March of Dimes on behalf of Max. But most importantly, please read below to understand the organization's work and goals.
(Below is from Evan's blog...thanks Sarah for the information.)
Today more than 1,300 babies in the U.S. will be born prematurely. These babies face an increased risk of death and serious medical complications; however, most, eventually, will go home. But what does the future hold for these babies? Many survivors grow up healthy; others aren’t so lucky. Even the best of care cannot always spare a premature baby from lasting disabilities such as cerebral palsy, mental retardation and learning problems, chronic lung disease, and vision and hearing problems. Half of all neurological disabilities in children are related to premature birth.
While doctors have made tremendous advances in caring for babies born too small and too soon, we need to find out how to prevent these tragedies from happening in the first place. Despite decades of research, scientists have not yet developed effective ways to help prevent premature delivery. In fact, the rate of premature birth increased almost 31 percent between 1981 and 2003 (9.4 to 12.3 percent).
March of Dimes launched the fight against prematurity officially at a press conference in Washington, D.C. on January 30, 2003. The all-out effort to reduce prematurity will be waged on a number of fronts.
Goal: Raising Awareness of Prematurity
The March of Dimes goal is to raise awareness of the problem of prematurity to 60 percent among women of childbearing age and 50 percent among the general public by 2010.
While the rate of premature births has been increasing, surveys show that most people have no idea either how widespread or how serious the problem is. Prematurity is a silent enemy...and can be a lethal one.
To inform the public about this serious problem, the March of Dimes has produced television, radio and print materials that will be distributed across the country.
Other material has been created to educate pregnant women about the signs of preterm labor and what to do if they have them.
Goal: Reducing the Rate of Premature Births
The March of Dimes goal is to reduce the rate of prematurity from 12.1 percent in 2002 to 7.6% in 2010, in accordance with the the U.S. Public Health Service Healthy People 2010 objective.
Prematurity has increased at an alarming rate over the past two decades. The March of Dimes is determined to stem the tide of premature deliveries with education and research.
Education helps ensure that pregnant women and their health care providers have the latest information about how to reduce the risk of a premature birth.
Funding research is critical to the fight against prematurity. If the causes of premature birth can be better understood, then new ways to prevent it can be developed. A significant portion of our research portfolio addresses prematurity. With help from people like you, we can fund more research. Help us gain more knowledge before we lose more babies.
So what can you do? If you are pregnant (or know someone who is), talk to your Dr. about your risk factors and the warning signs of preterm labor.
Also considering making a donation to the March of Dimes. You can visit their website for many different ways to donate: http://www.marchofdimes.com/
I know for me I learned about preterm labor the hard way...
My water broke at 28 weeks and I was immediately helicoptered down to Seattle. They were expecting me to give birth that night or at best within a few days. It was one of the most frightening times in my life...I had no idea what was happening or what to expect minute to minute.
With the assistance of very strong medications and strict hospital bed rest, Mighty Maxwell managed to stay "inside" until he was 32 weeks. The doctors were thrilled that we were able to sustain this period of time with no infections or serious issues for me or Max. He isn't a true "32 weeker" because the stress of low amniotic fluid didn't allow for complete development of his lungs and Max now suffers from chronic lung disease.
Unfortunately I did not recognize the signs of preterm labor. I had just moved to Bellingham from WV and attended my first two lamaze classes. I was experiencing backpain, cramping and spotting but just assumed that was part of pregnancy. However, Elizabeth thought something might be up so she took me to the hospital. I remember being in a room and looking over at a poster that listed the signs of preterm labor. We read them and I literally had each and every one. A few minutes later, my water ruptured...and the medical team rushed in. What a surreal moment that we will both never forget.
Who knows if I could have prevented Max's early arrival...perhaps by a few weeks (?) if I had known the warning signs. In his case, his arrival probably was because of his choanal atresia. Many babies with this birth defect arrive early because they cannot swallow the amniotic fluid. But in other cases with "typical" babies, knowing the warning signs of preterm labor may save a child's life.
We would appreciate your support of the March of Dimes on behalf of Max. But most importantly, please read below to understand the organization's work and goals.
(Below is from Evan's blog...thanks Sarah for the information.)
Today more than 1,300 babies in the U.S. will be born prematurely. These babies face an increased risk of death and serious medical complications; however, most, eventually, will go home. But what does the future hold for these babies? Many survivors grow up healthy; others aren’t so lucky. Even the best of care cannot always spare a premature baby from lasting disabilities such as cerebral palsy, mental retardation and learning problems, chronic lung disease, and vision and hearing problems. Half of all neurological disabilities in children are related to premature birth.
While doctors have made tremendous advances in caring for babies born too small and too soon, we need to find out how to prevent these tragedies from happening in the first place. Despite decades of research, scientists have not yet developed effective ways to help prevent premature delivery. In fact, the rate of premature birth increased almost 31 percent between 1981 and 2003 (9.4 to 12.3 percent).
March of Dimes launched the fight against prematurity officially at a press conference in Washington, D.C. on January 30, 2003. The all-out effort to reduce prematurity will be waged on a number of fronts.
Goal: Raising Awareness of Prematurity
The March of Dimes goal is to raise awareness of the problem of prematurity to 60 percent among women of childbearing age and 50 percent among the general public by 2010.
While the rate of premature births has been increasing, surveys show that most people have no idea either how widespread or how serious the problem is. Prematurity is a silent enemy...and can be a lethal one.
To inform the public about this serious problem, the March of Dimes has produced television, radio and print materials that will be distributed across the country.
Other material has been created to educate pregnant women about the signs of preterm labor and what to do if they have them.
Goal: Reducing the Rate of Premature Births
The March of Dimes goal is to reduce the rate of prematurity from 12.1 percent in 2002 to 7.6% in 2010, in accordance with the the U.S. Public Health Service Healthy People 2010 objective.
Prematurity has increased at an alarming rate over the past two decades. The March of Dimes is determined to stem the tide of premature deliveries with education and research.
Education helps ensure that pregnant women and their health care providers have the latest information about how to reduce the risk of a premature birth.
Funding research is critical to the fight against prematurity. If the causes of premature birth can be better understood, then new ways to prevent it can be developed. A significant portion of our research portfolio addresses prematurity. With help from people like you, we can fund more research. Help us gain more knowledge before we lose more babies.
So what can you do? If you are pregnant (or know someone who is), talk to your Dr. about your risk factors and the warning signs of preterm labor.
Also considering making a donation to the March of Dimes. You can visit their website for many different ways to donate: http://www.marchofdimes.com/
THE MEDICAL WAIVER
Whew, we are soooooo fortunate to have received the medical waiver!
I am still getting bills upon bills for the time that he did not have the coupon...and they are stacking up. I have been working with the insurance companies, DSHS and medical offices to figure something out. Fortunately there was only about a two month window without the coupon.
Beyond his medical appointments and procedures (the most pricey of the bills), he has mega equipment rental, medications, and therapy. Yesterday I received a whopper for the OT/PT that wasn't covered...that in itself set me back a pretty penny! Yikes!
I know Maxwell has more medical/developmental issues than many special needs kiddos and therefore his needs and expenses are much higher than average. (I don't like admitting that, but hey reality is reality.) But still, I don't know how special needs families can afford all of these costs on top of the time away from work or not being able to work at all.
And this medical waiver that Maxwell received is extremely, EXTREMELY uncommon. Actually another parent recently told me that our two sons are the only children who have received the waiver in this county for the last ten years! Yikes! That was difficult to hear (knowing how above and beyond medically fragile our children are) but it was also a reminder how incredibly fortunate we were to actually receive it. I am forever thankful for all the case workers and medical professionals who worked with me to make this happen. Wow.
As we move forward with the newly elected state and federal legislators, I kindly (and strongly) urge you to advocate on behalf of the special needs community. I never realized how much financial strain (in addition to the physical and emotional strain) was on families until Maxwell arrived. These families and their services need our support.
For example, here in Whatcom County they have a "payor of last resort" fund for families when they need financial assistance. Therapy appointments, sign language classes, special shoes (Dylan for example last week could have used this), etc. are just a few examples of items that can be covered through that fund. Unfortunately that fund has run dry and will not be replenished until next year.
These sources of assistance could be better funded if we advocate their importance to our elected officials.
And lastly, yes I know that many of you are probably going to post "what about the father? why isn't he paying?" Unfortunately that isn't going to happen without the courts forcing him to...so we are working on that. Yes indeed that is frustrating, I know! But I'm sure it will work out and I will be reimbursed eventually.
Ok now back to posting some super cute photos of Mighty, Mighty, Mighty Maxwell...
I am still getting bills upon bills for the time that he did not have the coupon...and they are stacking up. I have been working with the insurance companies, DSHS and medical offices to figure something out. Fortunately there was only about a two month window without the coupon.
Beyond his medical appointments and procedures (the most pricey of the bills), he has mega equipment rental, medications, and therapy. Yesterday I received a whopper for the OT/PT that wasn't covered...that in itself set me back a pretty penny! Yikes!
I know Maxwell has more medical/developmental issues than many special needs kiddos and therefore his needs and expenses are much higher than average. (I don't like admitting that, but hey reality is reality.) But still, I don't know how special needs families can afford all of these costs on top of the time away from work or not being able to work at all.
And this medical waiver that Maxwell received is extremely, EXTREMELY uncommon. Actually another parent recently told me that our two sons are the only children who have received the waiver in this county for the last ten years! Yikes! That was difficult to hear (knowing how above and beyond medically fragile our children are) but it was also a reminder how incredibly fortunate we were to actually receive it. I am forever thankful for all the case workers and medical professionals who worked with me to make this happen. Wow.
As we move forward with the newly elected state and federal legislators, I kindly (and strongly) urge you to advocate on behalf of the special needs community. I never realized how much financial strain (in addition to the physical and emotional strain) was on families until Maxwell arrived. These families and their services need our support.
For example, here in Whatcom County they have a "payor of last resort" fund for families when they need financial assistance. Therapy appointments, sign language classes, special shoes (Dylan for example last week could have used this), etc. are just a few examples of items that can be covered through that fund. Unfortunately that fund has run dry and will not be replenished until next year.
These sources of assistance could be better funded if we advocate their importance to our elected officials.
And lastly, yes I know that many of you are probably going to post "what about the father? why isn't he paying?" Unfortunately that isn't going to happen without the courts forcing him to...so we are working on that. Yes indeed that is frustrating, I know! But I'm sure it will work out and I will be reimbursed eventually.
Ok now back to posting some super cute photos of Mighty, Mighty, Mighty Maxwell...
Monday, November 13, 2006
TWO NEW GAMES
Here I am playing two of my new favorite games with our wonderful friend Momma Beyerlin! We adore each other...can you tell? :)
PEEK A BOO!
And "waving hello" is something else I am learning. Mommy is very excited about this one!
I haven't got the hang of it quite yet...as I wave hello at random times. But we think I will have this mastered in no time! So fun to communicate with others!
PEEK A BOO!
And "waving hello" is something else I am learning. Mommy is very excited about this one! I haven't got the hang of it quite yet...as I wave hello at random times. But we think I will have this mastered in no time! So fun to communicate with others!
PLAYING "DOCTOR" (OR NURSE!)
Max absolutely loves to play with stethoscopes...makes for a great chew toy!
INTRODUCING MASTER OF THE "DOWNWARD DOG"
Yep, this is Mighty Max's new favorite position....how funny is he? (For those of you not familiar with yoga, this position is "downward dog." But he didn't need to take any classes, he learned it all on his own!)
He absolutely loves being on his hand and feet! He must do this at least 30 times a day! He even had a little rug burn on his forehead the other day! Yikes!
He is one funny and strong dude! GO MAX GO!
Friday, November 10, 2006
MY SPECIAL FRIEND
Miss Stephanie is one of my very favorite people! We have so much fun together! She comes over sometimes to play with me, so Mommy can get some things done in the house. But Mommy has a hard time staying away, because she just loves watching how much we enjoy each other. :)
Mommy teaches her our different games and therapy goals so that our play is not only fun, but productive too...which makes Mommy really happy. Thank you Stephanie for always being so great with me. I love you very much!
I am learning how to push on this toy to make the objects go round and round. Finally this week I did it! YAY!
Mommy teaches her our different games and therapy goals so that our play is not only fun, but productive too...which makes Mommy really happy. Thank you Stephanie for always being so great with me. I love you very much!
I am learning how to push on this toy to make the objects go round and round. Finally this week I did it! YAY!
MAJOR "TRANSITION" ACCOMPLISHMENT
After I learned to sit independently, it was quickly on to my next goal...the transition from laying down to sitting and vice versa. This takes a lot of work! MEGA coordination and strength required!
My physical therapist was great at teaching mommy different ways to get this to happen. At first I really objected and was definitely not happy about all of this additional work. But my PT is wonderful at always pushing me to do more, more, more!
So for the past month or two, Mom and I have been really working at this. A few weeks ago I started to do it every once in a while (very exciting!), but there was no consistency.
But as of a few days ago, I do this A LOT! I cannot tell you how amazing and wonderful it is to be able to get in and out of the sitting position! This new achievement gives me such freedom!!! Mommy and I just love it! WOW! WOW! WOW!
And I always get lots and lots of praise for it. Sometimes I get so wrapped up in the excitement that when I do my happy dance, I fall back down! :) But the super cool part now is that I can get myself back up again! :) YAY FOR ME!
Mommy has tried to capture this on film, but the camera distracts me everytime (as evidenced below). I was just about to sit but as soon as I saw the camera, I immediately lost interest in that and scooted over to Mommy instead!
My physical therapist was great at teaching mommy different ways to get this to happen. At first I really objected and was definitely not happy about all of this additional work. But my PT is wonderful at always pushing me to do more, more, more!
So for the past month or two, Mom and I have been really working at this. A few weeks ago I started to do it every once in a while (very exciting!), but there was no consistency.
But as of a few days ago, I do this A LOT! I cannot tell you how amazing and wonderful it is to be able to get in and out of the sitting position! This new achievement gives me such freedom!!! Mommy and I just love it! WOW! WOW! WOW!
And I always get lots and lots of praise for it. Sometimes I get so wrapped up in the excitement that when I do my happy dance, I fall back down! :) But the super cool part now is that I can get myself back up again! :) YAY FOR ME!
Mommy has tried to capture this on film, but the camera distracts me everytime (as evidenced below). I was just about to sit but as soon as I saw the camera, I immediately lost interest in that and scooted over to Mommy instead!
There are more Mighty Max milestones on the way...stay tuned! :)
Thursday, November 09, 2006
PRAYERS FOR BEN
My friend, Ben, is having cochlear implant surgery on Friday the 10th (tomorrow), as well as having his nose stents removed from his choanal atresia (blocked nasal passages) repair. Man, he is going to be sooooo happy when those stents come out...I know I was! Imagine a straw in each of your nasal passages, yuck!
We have a lot in common with Ben's family and our mommies have become fast friends via the phone and internet. We both arrived within a month of each other...we were both born two months early...we both had choanal atresia...both of our mommies are named Amy...both enjoy scrapbooking...and they are both wonderful (ok Mommy made me write that last part...hee hee!!!)
Plese pray that my buddy's surgery goes well and his recovery is quick. Thanks everyone.
We have a lot in common with Ben's family and our mommies have become fast friends via the phone and internet. We both arrived within a month of each other...we were both born two months early...we both had choanal atresia...both of our mommies are named Amy...both enjoy scrapbooking...and they are both wonderful (ok Mommy made me write that last part...hee hee!!!)
Plese pray that my buddy's surgery goes well and his recovery is quick. Thanks everyone.
Wednesday, November 08, 2006
PLAYGROUP PHOTOS
BANG! BANG! BANG! Here we are (along with Dylan and "C") playing with the drum. SO FUN!
See me ALLLLLL the way over there? Yep, I made that journey all by myself!!! Go me go!
Here I am being funny after our group photo!(The group photo is super cute, but sorry, we can't post that b/c Mommy didn't get a chance to ask for everyone's permission. Confidentiality is very important at playgroup.)
This was my first art session! First I was a bit hesitant...especially when they brought out the ink pads and actually wanted me to touch them. I freaked out a bit. (We were making stamps of our hands.) But I definitely liked playing with the paper.
Just sitting on the step chillin' with my friends...
