We are excited to announce the kickoff of a hospital guild in honor of sweet lil' Maxwell! The proceeds from the "The Mighty Max Guild" will benefit the Children's Hospital Uncompensated Care Fund and gifts for long-term patients and their families.
Children's Hospital never turns away a child because of lack of insurance. Each year they provide over $30 million in uncompensated care. Truly incredible!
And as most of you know, Children's Hospital is where Maxwell spent the first six months of his life. The care, compassion and love from everyone was absolutely amazing. The staff goes above and beyond in making a hospital stay the best it can be. We are hoping that the proceeds from our guild can make this even more possible!
The kick off will be an exciting, fun filled "20 Hour Crop" on March 31st-February 1st. This crop has been an annual event of my sister's papercraft store, Treasury of Memories. Each year they choose a different charity to support.
The crop also benefitted Children's Hospital last year and I was visiting her during that time and I assisted her with the fundraising. Oddly enough, I remember asking her why they were supporting a hospital...and why a hospital in Seattle? Little did I realize what was ahead of us! And I simply had no idea of the amazing work of Children's...and the incredible Uncompensated Care Fund supporting families who couldn't afford health care!
Each attendee is asked to raise $100 — for a total goal of over $10,000! Attendees will enjoy 20 hours of uninterrupted scrapbooking, endless array of delicious food, two fun mini classes, door prizes — and all conveniently located at Christ the King Church, just across the parking lot from Treasury of Memories! To sign up, please call 360-715-3125 or email elizabeth@treasuryofmemories.com. Reserve your spot today!
If you cannot participate but would like to support the guild, please send your donation to: The Mighty Max Guild, 3204 Illinois Lane, Bellingham, WA 98226.
If you would like to help with this particular event and/or become an official member of the guild, please contact me as soon as possible at amysmckinley@aol.com or 360-527-0744. To become a member, we ask that you donate $25 to the guild. Checks should be directed toward "The Mighty Max Guild." (Note: You can be a member even if you do not live locally!)
If a donation is not possible at this time, we understand and would still absolutely cherish your volunteer time and talent. Thank you!!!
Additionally, we welcome your suggestions on businesses to approach for donations and would certainly appreciate your help in making particular donations happen. (For example, do you have a hairdresser willing to donate a cut? A law office willing to donate cash? A gym willing to donate a free membership? Please approach them and ask them directly - always more successful when being asked by a customer!)
Please tell your family and friends about this very exciting event and this extremely worthy cause! Thank you very much!
Thursday, February 02, 2006
WEEK IN REVIEW
Sorry I haven't posted for some time. I have received many emails wondering what is going on...thanks for your concern. This week has been absolutely crazy busy!
Monday was the temporary divorce hearing. Despite the unfriendly nature of the divorce, I was so hoping that we could at least be civil on issues relating to Maxwell and his care. Unfortunately that isn't happening and it just adds frustration to this already painful situation.
Tuesday was our clinic day at Children's Hospital...and what a day! Yikes! This was our first time to be away from home for more than a few hours. It took me and the nurse nearly TWO hours just to get all of his equipment, medications, etc. ready for the day.
Our original schedule was cardiology for extensive post-op follow up tests, endocrinology, and audiology. Then because of some breathing issues, I pleaded to add in ENT and Pulmonary at the last minute. Fortunately those specialties know us well and were very accomodating. They are wonderful!
Cardiology: This was our main focus of the day. The various tests indicated that overall the heart is doing well post surgery, however, there is a pressure issue that raised some concern so they will be following that closely. Unfortunately his weak lungs are contributing to that problem and only time and growth will fix his lungs.
Endocrinology: Max has not been responding great to his hormone treatment thus far so we began another series of shots. Hopefully we will see a better response this time.
Audiology: We got our personal set of hearing aides (our prior ones were loaners) and had Max fitted for another set of ear molds. Because of his age, he grows out of his molds about every month.
ENT: The nasal passages are still open, but one has narrowed somewhat and will probably require a surgery in the near future.
Pulmonary: Max has a respiratory infection right now, so he is dealing with labored breathing and high O2 requirements...but his lab tests are satisfactory. The pulmonary staff was all very excited to see him and how well he has done at home! We ran into lots of his nurses and everyone was so amazed with how good he looks! And they were all so excited to tell me that they had seen some of the TV coverage...our lil' celebrity!
In addition to the appointments, Max had to have some blood work done because of his breathing issues and then he was spiking a fever during his EKG.
So the day was absolutely jam packed and crazy. What was the most difficult was keeping up with all of his meds and treatments despite the busy appointment schedule. I would be in the waiting room trying to do all of his care, while keeping him occupied and happy AND also filling out paperwork.
At one point in the day, I looked at Max and just laughed out loud...and said "Sweet Max...I would only do this for you. This is an absolutely crazy day but I would do it a million times again for you. I hope you know how much your mommy adores you!!!" We were quite a sight! I had three backpacks...his oxygen tank, his kangaroo pump (feeding) and his diaper bag (jam packed with meds, diapers, etc.). And his stroller was completely filled too with all of our medical notebooks, more medications, heart and oxygen monitor...the works. Yes, we were quite a sight. And because he wasn't feeling well, he was wanting to be held. So I am holding him, carrying the three backpacks, and pushing the stroller all at one time. It was quite comical...people were getting a kick out of us!
What made the day even funnier was that in all the confusion that morning, I forgot to bring my pump...so I went about thirteen hours without pumping...yikes! For all you breastfeeding moms out there, you know what I mean! I felt like I was doing a Dolly Parton impersonation! :)
Then on the way home it was pouring down rain and the traffic was bumper to bumper. Max's alarms start going off and his 02 tank is nearly empty. Yikes, I can't get to the exit quick enough! Finally I do and I am at a rest stop climbing over seats to get a new tank attached, give him his meds and calm him down.
So needless to say, the day...from start to finish...was a little on the trying side! :)
That night was no easier unfortunately. We had a nurse but I still was unable to get much sleep because of Max's worsening health. He started to spike another fever, required even more O2 than earlier in the day and was coughing like mad. I talked with the pulmonologist and we held off on going to the hospital based on my wishes. And once again Max prevailed, just like he did a few weeks ago when the doctors thought I should bring him in. Basically this time they said we were doing all the right things at home and if I felt comfortable continuing the care at that level, I could keep him at home. Of course I said I will do whatever it takes to keep him out of the hospital!!!
So hopefully today Max remains stable and does not worsen. I think he is taking a turn for the better but we are still concerned because of the respiratory issues.
Whenever his respiratory issues arise, I get very concerned...and especially right now with RSV, flu, etc. going around. I spent a good chunk of yesterday dealing with the insurance company and the doctor's office because he was due for his third RSV shot nearly two weeks ago. However, everyone is pointing fingers at each other and finally I said "I don't care who has faxed who, who has called who...I want the shot for Max NOW. I will pay for it if I have to!" (It's a $1300 shot so you have to jump through a lot of hoops for it.) I just got a call from the doctor's while I was writing this post and it looks like we will have approval today...finally! Bad timing when he is already sick, but we need this done pronto.
Ok, I think this post has been LONG enough! Lots to write about these past few days and I just have not had the time! I must run but one last thing...thank you everyone for everything! Max and I are so deeply grateful as always for your love and prayers. We were surprised on Tuesday and Wednesday with some deliveries of VERY thoughtful, loving gifts...thank you, thank you, thank you everyone! :) Such fun!
Monday was the temporary divorce hearing. Despite the unfriendly nature of the divorce, I was so hoping that we could at least be civil on issues relating to Maxwell and his care. Unfortunately that isn't happening and it just adds frustration to this already painful situation.
Tuesday was our clinic day at Children's Hospital...and what a day! Yikes! This was our first time to be away from home for more than a few hours. It took me and the nurse nearly TWO hours just to get all of his equipment, medications, etc. ready for the day.
Our original schedule was cardiology for extensive post-op follow up tests, endocrinology, and audiology. Then because of some breathing issues, I pleaded to add in ENT and Pulmonary at the last minute. Fortunately those specialties know us well and were very accomodating. They are wonderful!
Cardiology: This was our main focus of the day. The various tests indicated that overall the heart is doing well post surgery, however, there is a pressure issue that raised some concern so they will be following that closely. Unfortunately his weak lungs are contributing to that problem and only time and growth will fix his lungs.
Endocrinology: Max has not been responding great to his hormone treatment thus far so we began another series of shots. Hopefully we will see a better response this time.
Audiology: We got our personal set of hearing aides (our prior ones were loaners) and had Max fitted for another set of ear molds. Because of his age, he grows out of his molds about every month.
ENT: The nasal passages are still open, but one has narrowed somewhat and will probably require a surgery in the near future.
Pulmonary: Max has a respiratory infection right now, so he is dealing with labored breathing and high O2 requirements...but his lab tests are satisfactory. The pulmonary staff was all very excited to see him and how well he has done at home! We ran into lots of his nurses and everyone was so amazed with how good he looks! And they were all so excited to tell me that they had seen some of the TV coverage...our lil' celebrity!
In addition to the appointments, Max had to have some blood work done because of his breathing issues and then he was spiking a fever during his EKG.
So the day was absolutely jam packed and crazy. What was the most difficult was keeping up with all of his meds and treatments despite the busy appointment schedule. I would be in the waiting room trying to do all of his care, while keeping him occupied and happy AND also filling out paperwork.
At one point in the day, I looked at Max and just laughed out loud...and said "Sweet Max...I would only do this for you. This is an absolutely crazy day but I would do it a million times again for you. I hope you know how much your mommy adores you!!!" We were quite a sight! I had three backpacks...his oxygen tank, his kangaroo pump (feeding) and his diaper bag (jam packed with meds, diapers, etc.). And his stroller was completely filled too with all of our medical notebooks, more medications, heart and oxygen monitor...the works. Yes, we were quite a sight. And because he wasn't feeling well, he was wanting to be held. So I am holding him, carrying the three backpacks, and pushing the stroller all at one time. It was quite comical...people were getting a kick out of us!
What made the day even funnier was that in all the confusion that morning, I forgot to bring my pump...so I went about thirteen hours without pumping...yikes! For all you breastfeeding moms out there, you know what I mean! I felt like I was doing a Dolly Parton impersonation! :)
Then on the way home it was pouring down rain and the traffic was bumper to bumper. Max's alarms start going off and his 02 tank is nearly empty. Yikes, I can't get to the exit quick enough! Finally I do and I am at a rest stop climbing over seats to get a new tank attached, give him his meds and calm him down.
So needless to say, the day...from start to finish...was a little on the trying side! :)
That night was no easier unfortunately. We had a nurse but I still was unable to get much sleep because of Max's worsening health. He started to spike another fever, required even more O2 than earlier in the day and was coughing like mad. I talked with the pulmonologist and we held off on going to the hospital based on my wishes. And once again Max prevailed, just like he did a few weeks ago when the doctors thought I should bring him in. Basically this time they said we were doing all the right things at home and if I felt comfortable continuing the care at that level, I could keep him at home. Of course I said I will do whatever it takes to keep him out of the hospital!!!
So hopefully today Max remains stable and does not worsen. I think he is taking a turn for the better but we are still concerned because of the respiratory issues.
Whenever his respiratory issues arise, I get very concerned...and especially right now with RSV, flu, etc. going around. I spent a good chunk of yesterday dealing with the insurance company and the doctor's office because he was due for his third RSV shot nearly two weeks ago. However, everyone is pointing fingers at each other and finally I said "I don't care who has faxed who, who has called who...I want the shot for Max NOW. I will pay for it if I have to!" (It's a $1300 shot so you have to jump through a lot of hoops for it.) I just got a call from the doctor's while I was writing this post and it looks like we will have approval today...finally! Bad timing when he is already sick, but we need this done pronto.
Ok, I think this post has been LONG enough! Lots to write about these past few days and I just have not had the time! I must run but one last thing...thank you everyone for everything! Max and I are so deeply grateful as always for your love and prayers. We were surprised on Tuesday and Wednesday with some deliveries of VERY thoughtful, loving gifts...thank you, thank you, thank you everyone! :) Such fun!
Thursday, January 26, 2006
THANK YOU EVERYONE!
Thank you everyone soooo much for the many supportive emails and phone calls today...wonderful to feel so loved and cared about during this difficult time. And thank you too for allowing me to vent about the divorce, etc. Some days when "my cup overfloweth," I just want to scream...but I never want Max to feel any stress or negativity. Only good vibes around my sweet lil' man! :) So it helps to know my family and friends are there to listen to me vent and then pick me back up...thank you!
Today is yet another "cup overfloweth" day unfortunately. One of my best friends back in Virginia, Kirstin, has a nephew, Ryan, who has been in the hospital since birth. (We already shared so much, it was so odd to share this ICU experience with her.) Ryan is just four months old and has been suffering from heart and blood clot issues. Tooday I learned he is not going to make it. His clots are worsening and now he has another infection. I literally screamed when I heard this news...enough is enough. We have seen too many babies die this year. I am trying to understand that our bodies some times just are not equipped to last, but it feels like death has been all around us. What a naive world I lived in before....I just assumed all babies were born healthy and happy. I was just nervous about knowing how to breastfeed or would my baby cry a lot, etc. What a reality check this year has been.
My heart goes out to Ryan's family...I can't believe I never had the opportunity to meet him. Please keep him and his wonderful, loving parents, Danielle and John (and aunt Kirstin) in your thoughts and prayers. What an incredible loss for all of us.
Additionally, Max is confusing me today. His heart rate has been much higher than usual during sleep and his O2 requirements are higher too. Hmmm...I have a call into the doctor's office and as soon as Max wakes up from his nap, I am driving him to the hospital for some lab tests. We'll see. I am hoping that I am just being paranoid, but I think something might be up.
Hopefully tomorrow will bring peace, health, and only good news!
Today is yet another "cup overfloweth" day unfortunately. One of my best friends back in Virginia, Kirstin, has a nephew, Ryan, who has been in the hospital since birth. (We already shared so much, it was so odd to share this ICU experience with her.) Ryan is just four months old and has been suffering from heart and blood clot issues. Tooday I learned he is not going to make it. His clots are worsening and now he has another infection. I literally screamed when I heard this news...enough is enough. We have seen too many babies die this year. I am trying to understand that our bodies some times just are not equipped to last, but it feels like death has been all around us. What a naive world I lived in before....I just assumed all babies were born healthy and happy. I was just nervous about knowing how to breastfeed or would my baby cry a lot, etc. What a reality check this year has been.
My heart goes out to Ryan's family...I can't believe I never had the opportunity to meet him. Please keep him and his wonderful, loving parents, Danielle and John (and aunt Kirstin) in your thoughts and prayers. What an incredible loss for all of us.
Additionally, Max is confusing me today. His heart rate has been much higher than usual during sleep and his O2 requirements are higher too. Hmmm...I have a call into the doctor's office and as soon as Max wakes up from his nap, I am driving him to the hospital for some lab tests. We'll see. I am hoping that I am just being paranoid, but I think something might be up.
Hopefully tomorrow will bring peace, health, and only good news!
Wednesday, January 25, 2006
ROLLER COASTER OF A DAY! (Personally not medically thankfully!)
Today started off really badly. My soon to be ex and I engaged in a series of emails about the upcoming hearings, financial support, etc. and while I shouldn't be surprised by his behavior, I still am. I still want to believe in the good of people!!!
Unfortunately though, this man shows no remorse for what he has done and has turned so truly heartless and cold about everything...the divorce, his betrayal, Maxwell...and I still find myself completely shocked and incredibly disappointed. I cannot believe I was so fooled before as to who he really is! Yikes!
The upcoming months certainly will be difficult. Our temporary hearing (for child support, etc.) is this Monday and the final is at the end of March. We are organizing our depositions in the coming weeks and while those "details" are not going to be easy to hear, it needs to be done. But yuck, yuck, yuck nevertheless.
One of our biggest disagreements is my need for good financial support. With all of Max's medical and developmental needs, there is absolutely no way I can return to work any time soon...possibly years. From what I have heard from other special needs families and fron my brief experience thus far, organizing Max's care (development, education, therapy, medical) will be a full time job...and then some! Therefore, we are arguing that the father should be responsible for this since he is not participating in his care. It's just unfortunate that we have to go to court over something so obvious.
ANYWAY, as I stated...the day started off badly, but WOW what an improvement as the day went on. :) Max and I had such a wonderful afternoon and evening...it's like he knew, "I better be super cute, my mom definitely needs lots and lots of snuggles and smiles!"
First off, we enjoyed a short little nap together. This has not been possible since I have been home. Usually when he is sleeping, I am running around the house sterilizing everything, doing his laundry, organizing, calling doctors and equipment companies, etc. Boring but necessary! But today I thought a little cuddle time would be perfect and more important than any work!
After our nap, we had a wonderful "therapy" session together. We started this week with two OT and PT appointments, and our "homework" tonight went really well! I got a "Bumbo" chair for him and it is awesome! I highly recommend it! It arrived today and I immediately put Maxwell into it and it was INCREDIBLE. It provides high support all around his body so that even though he has low muscle tone, he can work on strengthening his torso. And just in the past week he has made tremendous progress with head control. We still have a way to go but he is really working hard! I will make sure to take lots of photos tomorrow so everyone can see how ADORABLE and grown up he looks in his Bumbo! :) I know for some moms this might not sound like much, but trust me Max and I have had to work really hard to get where we are today! His development doesn't come quite as easily, but all the work is well worth it...especially when you see results like tonight!!! GO MAX GO!!! :)
Then after "therapy"/play time, we had SUCH a fun bath time. He was smiling (which is a relatively new thing) and there were even a few giggles. I was eating his toes and kissing his neck and he LOVES that...I keep telling him, "watch out Maxwell, I'm gonna just eat you up!" :) Then to complete a perfect evening, he fell asleep peacefully in my arms. Magical. Truly magical. Maxwell, I couldn't love you any more than I do right now. You are amazing! Thanks for turning this day around and making it wonderful like only you can! :)
Unfortunately though, this man shows no remorse for what he has done and has turned so truly heartless and cold about everything...the divorce, his betrayal, Maxwell...and I still find myself completely shocked and incredibly disappointed. I cannot believe I was so fooled before as to who he really is! Yikes!
The upcoming months certainly will be difficult. Our temporary hearing (for child support, etc.) is this Monday and the final is at the end of March. We are organizing our depositions in the coming weeks and while those "details" are not going to be easy to hear, it needs to be done. But yuck, yuck, yuck nevertheless.
One of our biggest disagreements is my need for good financial support. With all of Max's medical and developmental needs, there is absolutely no way I can return to work any time soon...possibly years. From what I have heard from other special needs families and fron my brief experience thus far, organizing Max's care (development, education, therapy, medical) will be a full time job...and then some! Therefore, we are arguing that the father should be responsible for this since he is not participating in his care. It's just unfortunate that we have to go to court over something so obvious.
ANYWAY, as I stated...the day started off badly, but WOW what an improvement as the day went on. :) Max and I had such a wonderful afternoon and evening...it's like he knew, "I better be super cute, my mom definitely needs lots and lots of snuggles and smiles!"
First off, we enjoyed a short little nap together. This has not been possible since I have been home. Usually when he is sleeping, I am running around the house sterilizing everything, doing his laundry, organizing, calling doctors and equipment companies, etc. Boring but necessary! But today I thought a little cuddle time would be perfect and more important than any work!
After our nap, we had a wonderful "therapy" session together. We started this week with two OT and PT appointments, and our "homework" tonight went really well! I got a "Bumbo" chair for him and it is awesome! I highly recommend it! It arrived today and I immediately put Maxwell into it and it was INCREDIBLE. It provides high support all around his body so that even though he has low muscle tone, he can work on strengthening his torso. And just in the past week he has made tremendous progress with head control. We still have a way to go but he is really working hard! I will make sure to take lots of photos tomorrow so everyone can see how ADORABLE and grown up he looks in his Bumbo! :) I know for some moms this might not sound like much, but trust me Max and I have had to work really hard to get where we are today! His development doesn't come quite as easily, but all the work is well worth it...especially when you see results like tonight!!! GO MAX GO!!! :)
Then after "therapy"/play time, we had SUCH a fun bath time. He was smiling (which is a relatively new thing) and there were even a few giggles. I was eating his toes and kissing his neck and he LOVES that...I keep telling him, "watch out Maxwell, I'm gonna just eat you up!" :) Then to complete a perfect evening, he fell asleep peacefully in my arms. Magical. Truly magical. Maxwell, I couldn't love you any more than I do right now. You are amazing! Thanks for turning this day around and making it wonderful like only you can! :)
Sunday, January 22, 2006
ROUGH DAY
Yesterday we had to say goodbye to yet another lil' boy in the ICU. Lane Clary, who turned 6 months old yesterday, also had his last day in his earthly body. He had experienced numerous complications with his intestines and liver and the doctors had basically tried everything. So rather than prolong his suffering, his parents had the opportunity to take him outside with the ventilator and wires removed and he was held in love as he passed away.
Learning of his death really hit me hard. This is the 7th child that we have had to say goodbye to since Max's birth. I literally fell to the floor and just cried and cried...for the loss of Lane, the loss of all the other lil' guys, the loss of innocence, the loss of a "normal" life.
Last night was rough too for me personally. I had a little "breakdown." While it is so wonderful to have Maxwell home, it can be incredibly draining (physically and emotionally) taking care of him with all of the machines, medications and monitoring. Being a single mom would be difficult enough...but being a single mom to a special needs child is simply overwhelming! I was about to throw the kangaroo pump out the window...I was sooo irritated.
Max was fussy and all I wanted to do was go to his room and rock him. But I couldn't. First I had to unplug everything, move all of his machines, untangle the many wires, and reattach everything. This is virtually impossible to do quickly while dealing with an upset baby. SO FRUSTRATING! Of course I am sooooo grateful that there are such machines so that we can be at home, but now I am just so wanting to live a more normal life (well as normal as it could possibly be in this bizarre divorce/new town/special needs situation!) and it is frustrating when I cannot do the simple "mom and baby" things without spending 30 minutes changing rooms.
Fortunately today's church service helped get me refocused on the positive and I am doing my best to accept that this is what it is and I truly am incredibly grateful to have Maxwell home and doing so well.
Learning of his death really hit me hard. This is the 7th child that we have had to say goodbye to since Max's birth. I literally fell to the floor and just cried and cried...for the loss of Lane, the loss of all the other lil' guys, the loss of innocence, the loss of a "normal" life.
Last night was rough too for me personally. I had a little "breakdown." While it is so wonderful to have Maxwell home, it can be incredibly draining (physically and emotionally) taking care of him with all of the machines, medications and monitoring. Being a single mom would be difficult enough...but being a single mom to a special needs child is simply overwhelming! I was about to throw the kangaroo pump out the window...I was sooo irritated.
Max was fussy and all I wanted to do was go to his room and rock him. But I couldn't. First I had to unplug everything, move all of his machines, untangle the many wires, and reattach everything. This is virtually impossible to do quickly while dealing with an upset baby. SO FRUSTRATING! Of course I am sooooo grateful that there are such machines so that we can be at home, but now I am just so wanting to live a more normal life (well as normal as it could possibly be in this bizarre divorce/new town/special needs situation!) and it is frustrating when I cannot do the simple "mom and baby" things without spending 30 minutes changing rooms.
Fortunately today's church service helped get me refocused on the positive and I am doing my best to accept that this is what it is and I truly am incredibly grateful to have Maxwell home and doing so well.
