Have you seen that commercial for the Sharpie pens? The mom tries to put the baby down and as soon as his feet touch the floor, he begins to cry.
That's my new life apparently! Max has developed a bit of an addiction to his mommy! While I love that he loves me (because I am equally addicted to him), it's a bit difficult at times with his medical equipment to carry him around everywhere. And even without the equipment, it is difficult to do anything while holding a near 18 pound (yep, you read that right...he is now weighing in at 17 pounds, 13 ounces!!!) kiddo with low muscle tone. You can't just balance him on your hip in the traditional "mom pose." He has to be supported and occasionally he likes to flip backwards so you have to be prepared at all times to catch him! And unfortunately, he just hasn't learned the concept of holding on...hopefully that will come someday???
Silly Max! Today was absolutely ridiculous. I literally would leave his sight for a second and he immediately would begin to whimper. As soon as he would see me again, he would smile and do a happy dance! For example, I was trying to dry my hair and so I put his exersaucer in my room...just a few feet from where I was in the bathroom. He quickly let me know that "nope, this still isn't close enough." I had to lay him on the floor at my feet, and then all was well.
Fortunately he has finally decided to accept being in the Bjorn. This makes some activity possible and he absolutely LOVES to be all snuggled in together. Too funny! I absolutely love this too!
Curious to see how long this "mommy addiction" lasts...hopefully it is just a phase?
Saturday, August 26, 2006
Friday, August 25, 2006
VICTORY!!!
This is one of those moments where you actually take the time to pat yourself on the back...and not be ashamed to admit it! :) I am sooo proud and excited!
But the magnitude of it also is truly overwhelming...because it's a double edged sword.
I have been working for many months with local agencies to find a source of financial aid to help with Maxwell's medical expenses. I can see where many parents either decide not to pursue other options or simply give up along the way. It has been an exhausting, long process...but it worked!
First we had to do a lot of research to find the appropriate source. Then the tricky part was to get Max qualified. Eeks! We had a lot of meetings, consultations, and paperwork to prove his disabilities and extreme medical fragility (never ever fun to do), and they said now it depends on the government. "Let's wait and see." I called them just about every day and finally we got the good news.
MAXWELL HAS BEEN APPROVED! He will receive a "medical coupon" and it is not dependent upon my income. This was the very difficult point. You can qualify for a coupon if your income is fairly low, however if you are above that limit...you are on your own. (And I agree with that because I understand and support that the government cannot be all things to all people.)
The exception to the income requirement is if your child is extremely medically fragile (as one person stated "one of the sickest of the sickest"). You can then apply for a medical waiver. Most people don't know about the waiver, because few and far between children actually receive it. Like literally...VERY few and far between. It's just crazy that Max was approved!
So obviously I am absolutely thrilled that our hard work has paid off and Max will be receiving this coupon. But as I said earlier, it truly is a double edged sword victory. You are delighted to receive this financial support, HOWEVER it is also overwhelming to think that your child is that sick to qualify for such a high level, extremely limited program. I actually had difficulty breathing the first few days when I found out...it just was shocking. I only know of ONE other child in this entire region that has this waiver. I talked with the mom the other day and she said it gives you the goosebumps, doesn't it? In a bad and good way...yes.
Congratulations Mighty Max!!!
But the magnitude of it also is truly overwhelming...because it's a double edged sword.
I have been working for many months with local agencies to find a source of financial aid to help with Maxwell's medical expenses. I can see where many parents either decide not to pursue other options or simply give up along the way. It has been an exhausting, long process...but it worked!
First we had to do a lot of research to find the appropriate source. Then the tricky part was to get Max qualified. Eeks! We had a lot of meetings, consultations, and paperwork to prove his disabilities and extreme medical fragility (never ever fun to do), and they said now it depends on the government. "Let's wait and see." I called them just about every day and finally we got the good news.
MAXWELL HAS BEEN APPROVED! He will receive a "medical coupon" and it is not dependent upon my income. This was the very difficult point. You can qualify for a coupon if your income is fairly low, however if you are above that limit...you are on your own. (And I agree with that because I understand and support that the government cannot be all things to all people.)
The exception to the income requirement is if your child is extremely medically fragile (as one person stated "one of the sickest of the sickest"). You can then apply for a medical waiver. Most people don't know about the waiver, because few and far between children actually receive it. Like literally...VERY few and far between. It's just crazy that Max was approved!
So obviously I am absolutely thrilled that our hard work has paid off and Max will be receiving this coupon. But as I said earlier, it truly is a double edged sword victory. You are delighted to receive this financial support, HOWEVER it is also overwhelming to think that your child is that sick to qualify for such a high level, extremely limited program. I actually had difficulty breathing the first few days when I found out...it just was shocking. I only know of ONE other child in this entire region that has this waiver. I talked with the mom the other day and she said it gives you the goosebumps, doesn't it? In a bad and good way...yes.
Congratulations Mighty Max!!!
Wednesday, August 23, 2006
EXHAUSTED
Max and I are exhausted. Neither of us slept much last night and then we had a very long morning at the doctor's office. In addition to some respiratory issues, he was having a very difficult time with his feeds last night. He vomited everything and then was dry heaving this morning...I think I changed my shirt about five times last night.
He was absolutely miserable...poor lil' guy. And every time I thought he was done vomiting and back to sleep in my arms, I would gently try and put him back in his crib. Usually he does that just fine...but each and every time he just cried and cried immediately. "Mommy love" seemed to be the only thing that worked, even slightly, to bring him comfort.
I'm so confused on what is going on with him. He has all these random symptoms and nothing is adding up to a "diagnosis." His latest was a rash all over his chest and then on his face this morning.
We did a chest xray this morning and more blood work. Neither went smoothly to say the least. I'll have to bring my camera someday to the office so you can see what Max endures each time for his xray. This seat is quite frankly a torture device. He just cries and cries and looks at me, like "why in the world are you doing this to me!?!?"
Then they could not get a good vein so we resorted to the toe poke. But for whatever reason, his blood was not wanting to move today and then it also started to clot. So I think we ended up doing it 3 or 4 times...he again was crying frantically. Actually the phlebotomist was so upset too that she had someone take over for her. Hey, can someone take over for me too??? And while you're at it, have someone take over for Max too please...thanks.
After all the tests, inhalers, exams, consults, etc., they brought out their high tech suction machine to see if that would help his tachycardia (breathing rate). The doctor had such a difficult time and said obviously you are not going to be able to suction Max for much longer as he is getting stronger (Max was completely flipping out and it took all three of us to hold him down).
Are you kidding? It's a lifesaver when he cannot breathe. I do this several times a day, even in the middle of the night half asleep! I showed them my technique and they were pretty amazed with how well it works. I sit opposite of Maxwell with one leg over each arm holding his head still between my legs. It looks awful but it keeps Max from going crazy! I've even learned a way to keep him from being furious (some of the time)...I tickle the corners of his mouth with the hose. Sometimes I even get a smile, which is just crazy. That's only if he is in a really good mood and I'm just going in for a quick suck. (Ok, is that weird that I have names for the different types of suctioning that I do???)
I was pretty emotional during the appointment today. I kept trying to hold back the tears, but a few escaped. Max has had such a difficult few months. None of it has been life threatening or anything (thank you Lord!)...so in some ways, I feel like I shouldn't complain. (Actually I guess some of it is life threatening but we always catch it in time, but I don't like to think of it that way.) He is alive, out of the hospital and making great developmental progress. I feel quite blessed considering all that could be happening to him right now.
But at the same time, I am discouraged because he has had one virus after another, after another, after another. There never seems to be more than a two day break. And his illnesses hit hard and you never know how serious each one will be. So it adds a layer of tension and worry...and I feel like this is all on my shoulders. Actually it's not just a feeling, it's the truth unfortunately. Yes we have a great medical team for Maxwell...but as the only involved parent, the daily decisions and responsibility are solely mine. It would be so helpful to have someone to talk with about everything. "What do you think about this? Have you noticed this? Do you think we should..." Oh well, it is what it is...but it just can be a little overwhelming from time to time.
Anyway, the doctor was feeling really bad for Max too and tried just about everything to come up with a solution. When nothing really showed up, he was pretty stumped and frustrated.
Isn't there some kind of miracle pill to make this pain all go away??? I just want Max to feel good. I want him to be able to breathe normally and not like he just ran a marathon 24/7. I want him to be able to focus his energy on development, not breathing. The doctor reminded me again that *hopefully* time will be our cure. His lungs need to grow and recover from his chronic lung disease. And then *hopefully* he will be stronger and more resistent to germs and infections.
I best run...Max is starting to wake up from his nap. Hopefully he will be feeling rested and a little better. The doctor wants to see him again tomorrow. Hopefully that appointment won't be as intense as today's. (I just noticed that is about the tenth time I used *hopefully* in this post...seems to be one of my favorite words recently...always hoping, hoping, hoping.)
He was absolutely miserable...poor lil' guy. And every time I thought he was done vomiting and back to sleep in my arms, I would gently try and put him back in his crib. Usually he does that just fine...but each and every time he just cried and cried immediately. "Mommy love" seemed to be the only thing that worked, even slightly, to bring him comfort.
I'm so confused on what is going on with him. He has all these random symptoms and nothing is adding up to a "diagnosis." His latest was a rash all over his chest and then on his face this morning.
We did a chest xray this morning and more blood work. Neither went smoothly to say the least. I'll have to bring my camera someday to the office so you can see what Max endures each time for his xray. This seat is quite frankly a torture device. He just cries and cries and looks at me, like "why in the world are you doing this to me!?!?"
Then they could not get a good vein so we resorted to the toe poke. But for whatever reason, his blood was not wanting to move today and then it also started to clot. So I think we ended up doing it 3 or 4 times...he again was crying frantically. Actually the phlebotomist was so upset too that she had someone take over for her. Hey, can someone take over for me too??? And while you're at it, have someone take over for Max too please...thanks.
After all the tests, inhalers, exams, consults, etc., they brought out their high tech suction machine to see if that would help his tachycardia (breathing rate). The doctor had such a difficult time and said obviously you are not going to be able to suction Max for much longer as he is getting stronger (Max was completely flipping out and it took all three of us to hold him down).
Are you kidding? It's a lifesaver when he cannot breathe. I do this several times a day, even in the middle of the night half asleep! I showed them my technique and they were pretty amazed with how well it works. I sit opposite of Maxwell with one leg over each arm holding his head still between my legs. It looks awful but it keeps Max from going crazy! I've even learned a way to keep him from being furious (some of the time)...I tickle the corners of his mouth with the hose. Sometimes I even get a smile, which is just crazy. That's only if he is in a really good mood and I'm just going in for a quick suck. (Ok, is that weird that I have names for the different types of suctioning that I do???)
I was pretty emotional during the appointment today. I kept trying to hold back the tears, but a few escaped. Max has had such a difficult few months. None of it has been life threatening or anything (thank you Lord!)...so in some ways, I feel like I shouldn't complain. (Actually I guess some of it is life threatening but we always catch it in time, but I don't like to think of it that way.) He is alive, out of the hospital and making great developmental progress. I feel quite blessed considering all that could be happening to him right now.
But at the same time, I am discouraged because he has had one virus after another, after another, after another. There never seems to be more than a two day break. And his illnesses hit hard and you never know how serious each one will be. So it adds a layer of tension and worry...and I feel like this is all on my shoulders. Actually it's not just a feeling, it's the truth unfortunately. Yes we have a great medical team for Maxwell...but as the only involved parent, the daily decisions and responsibility are solely mine. It would be so helpful to have someone to talk with about everything. "What do you think about this? Have you noticed this? Do you think we should..." Oh well, it is what it is...but it just can be a little overwhelming from time to time.
Anyway, the doctor was feeling really bad for Max too and tried just about everything to come up with a solution. When nothing really showed up, he was pretty stumped and frustrated.
Isn't there some kind of miracle pill to make this pain all go away??? I just want Max to feel good. I want him to be able to breathe normally and not like he just ran a marathon 24/7. I want him to be able to focus his energy on development, not breathing. The doctor reminded me again that *hopefully* time will be our cure. His lungs need to grow and recover from his chronic lung disease. And then *hopefully* he will be stronger and more resistent to germs and infections.
I best run...Max is starting to wake up from his nap. Hopefully he will be feeling rested and a little better. The doctor wants to see him again tomorrow. Hopefully that appointment won't be as intense as today's. (I just noticed that is about the tenth time I used *hopefully* in this post...seems to be one of my favorite words recently...always hoping, hoping, hoping.)
Monday, August 21, 2006
MY SWING TIME!
I love how my physical therapist always tries to incorporate some fun activities into our session. "Work hard, play hard" is our motto! Plus this swing makes me work on my torso strength, which is very important as I learn how to sit!
Not too sure about the swing today guys. I think I'd rather just suck on my fingers. Is that ok?
Wait, I do like this swing! It is delicious!
Look Mommy, no hands!
(Not only was I beginning to enjoy the swing but Mommy was making all kinds of funny faces and dances to get me laughing! She's so crazy!)
WOW! That was fun! Thanks!
Not too sure about the swing today guys. I think I'd rather just suck on my fingers. Is that ok?
Wait, I do like this swing! It is delicious!
Look Mommy, no hands!(Not only was I beginning to enjoy the swing but Mommy was making all kinds of funny faces and dances to get me laughing! She's so crazy!)
WOW! That was fun! Thanks!
OUR DAY
I called my doctor today and as soon as the nurse answered the phone, I said "You know that movie Groundhog Day?" She immediately started to chuckle and said "what is the latest Amy? What is Max doing now?" We are trying to find humor together in this most difficult situation! :) Max simply doesn't want to stay healthy for more than a few days...and it can be quite worrisome. But if I got all freaked out everytime, I would have been in a straight jacket months ago! So we try and keep calm about all these ups and downs of Mr. Max's and just go with the flow.
Since he didn't get any worse today, I decided to hold off on until tomorrow for an appointment. I am almost confident he will need to restart some of his heart drugs. In addition to his lung issues, I have noticed he is looking puffy in the morning...which could be a sign of fluid retention. Not good for his lungs or heart.
So to give him a break, we tried to have a more relaxing day with less intensive therapy. Ok, I still made him do some...but I did ease up a little! Our PT appointment went fairly well. He wasn't at his finest, but we still did do some good work. And we ended with a few minutes on the swing. His PT (Jill - she's wonderful!) thinks it is helping with his trunk strength and control. I just like it because he looks so cute and grown up swinging all on his own!!! Check out the photos!
Later this afternoon we did some sensory work in the grass at home. He is NOT liking laying in the grass...but we will keep working on it. To reward him for trying, I let him go crazy on my hair (his absolute favorite activity). He was making so much noise that one of my neighbors came over. She said we looked like we were having such a good time, she wanted to join us!!! Too funny! :)
Then tonight Eliz and I went on a quick walk down the street and did some blackberry picking. YUM, YUM, YUM! How cool is that to be able to walk down your street and pick fresh, delicious blackberries? I was sooo happy! Max kept reaching for my cup of berries and I kept reminding him that someday we will be berry picking together!
It's funny about Max. A part of me wants to shelter him and keep him isolated and safe. The other part wants to expose him to as much as possible in life. I have no idea what the future holds for Maxwell and I want us to enjoy each and every minute we have together. I was thinking about that tonight as we were picking the blackberries. Here I am with Max in the Bjourn without a monitor...and just a few hours earlier, I thought I should take him into the emergency room for his labored breathing. It is such a balancing act! :) I want to be careful, yet I want him to enjoy life. I guess I will just keep relying on my gut instinct...fortunately it's been right on for the most part.
Anyway off to clean the house before the nurse gets here...Max and I made a mess today! It's like a toy store exploded in every room! :)
Since he didn't get any worse today, I decided to hold off on until tomorrow for an appointment. I am almost confident he will need to restart some of his heart drugs. In addition to his lung issues, I have noticed he is looking puffy in the morning...which could be a sign of fluid retention. Not good for his lungs or heart.
So to give him a break, we tried to have a more relaxing day with less intensive therapy. Ok, I still made him do some...but I did ease up a little! Our PT appointment went fairly well. He wasn't at his finest, but we still did do some good work. And we ended with a few minutes on the swing. His PT (Jill - she's wonderful!) thinks it is helping with his trunk strength and control. I just like it because he looks so cute and grown up swinging all on his own!!! Check out the photos!
Later this afternoon we did some sensory work in the grass at home. He is NOT liking laying in the grass...but we will keep working on it. To reward him for trying, I let him go crazy on my hair (his absolute favorite activity). He was making so much noise that one of my neighbors came over. She said we looked like we were having such a good time, she wanted to join us!!! Too funny! :)
Then tonight Eliz and I went on a quick walk down the street and did some blackberry picking. YUM, YUM, YUM! How cool is that to be able to walk down your street and pick fresh, delicious blackberries? I was sooo happy! Max kept reaching for my cup of berries and I kept reminding him that someday we will be berry picking together!
It's funny about Max. A part of me wants to shelter him and keep him isolated and safe. The other part wants to expose him to as much as possible in life. I have no idea what the future holds for Maxwell and I want us to enjoy each and every minute we have together. I was thinking about that tonight as we were picking the blackberries. Here I am with Max in the Bjourn without a monitor...and just a few hours earlier, I thought I should take him into the emergency room for his labored breathing. It is such a balancing act! :) I want to be careful, yet I want him to enjoy life. I guess I will just keep relying on my gut instinct...fortunately it's been right on for the most part.
Anyway off to clean the house before the nurse gets here...Max and I made a mess today! It's like a toy store exploded in every room! :)
WELCOME JONAH!
My friend, Kristy, gave birth to a beautiful baby boy on Friday...and we are soooo excited to welcome Jonah Ray!!! Jonah is the little brother of DYLAN, a friend and classmate of Max's. Many of you met Dylan at Max's birthday party...he was the kiddo with the super cute smile showing off all of his new signs!
The Gillig family has been incredibly amazing to us, and we are so thrilled that they have "expanded" their gang. YAY!
Their family holds a very special place in my heart. We met outside the NICU at Children's one day last year, and I was sooo happy to know at least one other family in the Bellingham special needs community. (Mom, thanks again for making that introduction!)
Congratulations again Kristy, Ray, and Dylan...and welcome Jonah! :)
The Gillig family has been incredibly amazing to us, and we are so thrilled that they have "expanded" their gang. YAY!
Their family holds a very special place in my heart. We met outside the NICU at Children's one day last year, and I was sooo happy to know at least one other family in the Bellingham special needs community. (Mom, thanks again for making that introduction!)
Congratulations again Kristy, Ray, and Dylan...and welcome Jonah! :)
Sunday, August 20, 2006
ADVENTURE DAY
Well, it looks like Max might be getting sick...again! Can you believe it? Nor can I, darnit. His respiratory rate and heart rate started to increase over the weekend, and his oxygen needs increased today too. This usually means something is brewing. So back to the doctor's again tomorrow. He has been living on prednisone for months now (on and off) and we don't want to have to resort to that again. Steroids are not a very healthy long term solution...so hopefully we can come up with something else to help.
Even his four year old cousin Jackson noticed his labored breathing. And so today when Jackson was giving a review of Max's recent milestones (it was absolutely adorable!), he included "learn how to breathe" as a future goal. How smart and wonderful is he??? I just love my nephews and love how much they love Maxwell! :)
At least we were able to fit in two days of fun activity while we could! On Friday we enjoyed a day at the local fair. Some of our neighbors were showing their horses...so we joined them for a lil' adventure!
Max enjoyed meeting a horse for the very first time. I warned him that the horse would probably not enjoy a "Max Attack!" :)
Cousin Jackson giving Mighty Max some loving!
Max was exhausted by mid day...so we headed home.
Even his four year old cousin Jackson noticed his labored breathing. And so today when Jackson was giving a review of Max's recent milestones (it was absolutely adorable!), he included "learn how to breathe" as a future goal. How smart and wonderful is he??? I just love my nephews and love how much they love Maxwell! :)
At least we were able to fit in two days of fun activity while we could! On Friday we enjoyed a day at the local fair. Some of our neighbors were showing their horses...so we joined them for a lil' adventure!
Max enjoyed meeting a horse for the very first time. I warned him that the horse would probably not enjoy a "Max Attack!" :)
Cousin Jackson giving Mighty Max some loving!
Max was exhausted by mid day...so we headed home.
THANKS FRIENDS!
Below are some photos of me sporting a few fun gifts from some terrific friends. Thanks everyone!
* And a special thank you to Pam for the dinners for mommy...I don't have a photo but just imagine a big smile on mom's face! Thanks again! Sooo thoughtful of you! :)
This super cute outfit is from one of my favorite WV friends, Mary Karr! I call her Auntie Mary and I love her! The very first time I met her I felt so comfortable that I fell asleep! You are wonderful...thank you for EVERYTHING!!!
If I wasn't tough enough before...check out my new Harley Davidson bib!!! My friend Carolyn has been amazingly supportive to me and Mom! We didn't know her before all of this, but my spirit grabbed her and now she is hooked! She went to high school with my grandpa...there sure are a lot of nice people in Wheeling, WV!
This fun "Maxwell" chair was from Drew & Steph...we love it!!! (Mom promises she'll get a better photo soon so you can see how cute this chair is!) Thanks again guys! We miss you!
I am now officially in my big boy car seat...WOW! Thanks Mom, I feel so grown up! She was pretty nervous about switching me over, but the time has come. Thanks Uncle Jim for helping!
And one of my VERY favorite gifts in the whole wide world is my precious time with "the girls," aka Hannah, Alison and Sarah (pictured here) and their mommy, Lori. They are sooooo good to me and my mom. They absolutely adore me (which mom loves!!!), they are super nice and fun (which mom loves!!!), and they always feed her delicious food (which mom loves!!!) hee hee!
Speaking of the Byerlins, they are having us over tonight so I best run! Mom will get her favorite brownies and I will get lots and lots of cuddles...you can't ask for anything more right? :)
