Hmm...how am I going to get that toy?
Can't quite reach it.
Well, here goes...I'll just roll over.
GOT IT!
Saturday, July 15, 2006
LOOK AT ME!!! LOOK AT ME!!!
Hmm...how am I going to get that toy?Can't quite reach it.Well, here goes...I'll just roll over.
GOT IT!
HAPPY BIRTHDAY EVAN!!!!
Mr. Evan Storrs, Mighty Max's friend in CHARGE land, turns ONE today! Happy Birthday big guy! We are so proud of you and all that you have accomplished this first year! You are a wonderful gift to everyone around you. Let's hope this year is nothing but joy, peace, health, love, progress, and happiness!!!
HAPPY BIRTHDAY EVAN! :)
HAPPY BIRTHDAY EVAN! :)
HAPPY BIRTHDAY EVAN! :)
*Evan and Max were hospitalized at Children's at the same time, and his parents and I quickly became friends! Now we compare notes on our children, offer suggestions, provide support...the works! You name it, we discussed it! Not the normal run of the mill "mommy" conversations! (So how low does his heart rate drop? Hmmm...so his feeding is at what rate? And what did the craniofacial team think, will he require surgery? Oh, so another UTI again? What can they do about the absent kidney?)
I feel so blessed to have made such wonderful friends throughout the special needs community. God certainly picks amazing people to be parents to such incredible kiddos!!! :)
HAPPY BIRTHDAY EVAN! :)
HAPPY BIRTHDAY EVAN! :)
HAPPY BIRTHDAY EVAN! :)
*Evan and Max were hospitalized at Children's at the same time, and his parents and I quickly became friends! Now we compare notes on our children, offer suggestions, provide support...the works! You name it, we discussed it! Not the normal run of the mill "mommy" conversations! (So how low does his heart rate drop? Hmmm...so his feeding is at what rate? And what did the craniofacial team think, will he require surgery? Oh, so another UTI again? What can they do about the absent kidney?)
I feel so blessed to have made such wonderful friends throughout the special needs community. God certainly picks amazing people to be parents to such incredible kiddos!!! :)
Thursday, July 13, 2006
ABC News
Did anyone see ABC News tonight and the story on infertility treatment? They were filming in a NICU and the mom holding the preemie in the background was not me...but it must have been the triplet of me and Eliz. Soooooo weird! The only reason I knew it wasn't me was because the little baby didn't have quite enough wires! Back then Max was quite "attached."
Wow, that was really, really strange. I'm working on the computer right now and when I heard "preemie," I turned to see what they were discussing on TV. And there was "me" or at least our look a like! I actually thought it was me and that perhaps I had forgotten about the filming during our stay!!! Ok, back to my research...
Wow, that was really, really strange. I'm working on the computer right now and when I heard "preemie," I turned to see what they were discussing on TV. And there was "me" or at least our look a like! I actually thought it was me and that perhaps I had forgotten about the filming during our stay!!! Ok, back to my research...
A REQUEST PLEASE :)
I have so greatly appreciated everyone's support in this divorce...I truly, truly appreciate your love, support and ongoing prayers. It has been an incredibly difficult period in my life, and I don't know what I would have done without my family, friends and faithfulness of God.
On particularly rough days, this blog has been helpful to share my frustration with my family and friends. I think it is very important for everyone to understand the latest in this crazy divorce, because how much it directly impacts Maxwell and his future. (If only the ex and his attorney could understand that too!)
So while on occasion I might mention the divorce (which hopefully is resolved sooner than later) and related financial issues, I don't want it to be a focus. I really don't want to read every day about how much everyone hates my ex. (Notice that I never even use his name in my blog.) Perhaps if everyone could just limit their comments on my ex to when the subject is actually on the divorce?
I love reading about how much you love my son, I love reading about how adorable Maxwell is, I love how proud you are of his accomplishments. I love all of that! And I do love when you send comments of encouragement about the divorce...that really does help me too! :)
But with our divorce already being so disastrous, I don't really want to make it any worse with constant hateful remarks about my ex. I know his behavior can be infuriating , trust me...I know! But there is no point in commenting over and over again about how terrible he is. We all know the truth...he has some serious issues. But that is not what this blog is about. I want the focus of the blog to be on Mighty Max and his miraculous will to live and thrive! :)
I hope I haven't offended anyone with this request. I do greatly appreciate your support...but let's just simmer down the angry feelings a bit! Thanks so much!!!
* I will make one exception though! We have another divorce hearing this Tuesday the 18th and if my ex husband and his attorney continue on as they have (trying to reduce our income, minimizing the needs of Maxwell, etc.), then trust me I will be venting and you are free to vent too!!! But hopefully we will be successful in explaining the situation and the judge will do what is in the best interest of Maxwell. I simply won't allow anything less....no ifs, ands or buts! No one is going to limit my son's potential...no one!
On particularly rough days, this blog has been helpful to share my frustration with my family and friends. I think it is very important for everyone to understand the latest in this crazy divorce, because how much it directly impacts Maxwell and his future. (If only the ex and his attorney could understand that too!)
So while on occasion I might mention the divorce (which hopefully is resolved sooner than later) and related financial issues, I don't want it to be a focus. I really don't want to read every day about how much everyone hates my ex. (Notice that I never even use his name in my blog.) Perhaps if everyone could just limit their comments on my ex to when the subject is actually on the divorce?
I love reading about how much you love my son, I love reading about how adorable Maxwell is, I love how proud you are of his accomplishments. I love all of that! And I do love when you send comments of encouragement about the divorce...that really does help me too! :)
But with our divorce already being so disastrous, I don't really want to make it any worse with constant hateful remarks about my ex. I know his behavior can be infuriating , trust me...I know! But there is no point in commenting over and over again about how terrible he is. We all know the truth...he has some serious issues. But that is not what this blog is about. I want the focus of the blog to be on Mighty Max and his miraculous will to live and thrive! :)
I hope I haven't offended anyone with this request. I do greatly appreciate your support...but let's just simmer down the angry feelings a bit! Thanks so much!!!
* I will make one exception though! We have another divorce hearing this Tuesday the 18th and if my ex husband and his attorney continue on as they have (trying to reduce our income, minimizing the needs of Maxwell, etc.), then trust me I will be venting and you are free to vent too!!! But hopefully we will be successful in explaining the situation and the judge will do what is in the best interest of Maxwell. I simply won't allow anything less....no ifs, ands or buts! No one is going to limit my son's potential...no one!
Wednesday, July 12, 2006
A pizza a day keeps the doctors away!!! :)
Ok, this has pretty much nothing to do with Maxwell, but I just had to share. Perhaps other crazy busy moms (especially ones with "high maintenance" kiddos!) can relate and get a good chuckle! :)
I have realized recently that my diet resembles more of a college frat boy than a 33 year old mother! Yikes! But when you always eat on the go and your child doesn't eat (orally that is), you don't really have time or the motivation to make a meal and then actually sit down and eat it. Quite a novelty that would be! :)
Actually as I write this I am eating my 5th bowl of Captain Crunch today! I am smiling because I am almost too embarrassed to admit it! But I also must admit...I think this cereal is quite yummy! (and really cheap when on sale!!!) My other meals today consisted of frozen pizza (also on sale!). I seriously cannot remember the last time a vegetable entered my body...hmm, I'll have to think about that one. Wait, I believe there were peppers on the pizza, that counts right???
I guess if there is one good thing about Max having a Gtube...it is this. He won't emulate my new silly eating patterns! I am hoping that within a few years, Max will be able (HOPEFULLY) to eat orally, so I better not make this carb/pizza diet much of a habit! Bring on the fruit and veggies...well someday!
I have realized recently that my diet resembles more of a college frat boy than a 33 year old mother! Yikes! But when you always eat on the go and your child doesn't eat (orally that is), you don't really have time or the motivation to make a meal and then actually sit down and eat it. Quite a novelty that would be! :)
Actually as I write this I am eating my 5th bowl of Captain Crunch today! I am smiling because I am almost too embarrassed to admit it! But I also must admit...I think this cereal is quite yummy! (and really cheap when on sale!!!) My other meals today consisted of frozen pizza (also on sale!). I seriously cannot remember the last time a vegetable entered my body...hmm, I'll have to think about that one. Wait, I believe there were peppers on the pizza, that counts right???
I guess if there is one good thing about Max having a Gtube...it is this. He won't emulate my new silly eating patterns! I am hoping that within a few years, Max will be able (HOPEFULLY) to eat orally, so I better not make this carb/pizza diet much of a habit! Bring on the fruit and veggies...well someday!
ALL TANGLED UP!
Hey Mommy, can you help me out here?
Monday, July 10, 2006
SLEEPING BEAUTY
Even when I am sleeping, Mommy is amazed with my beauty and charm! Thought we'd share a few favorites from this past week...enjoy! :)
All this exercise wears out a lil' guy!
My first sports jersey...thanks Aunt Lisa!Oh and notice my cannula? I think the forehead is a great place for receiving oxygen, don't you?
Just love snuggling like this! Plus my mommy can't give me any inhalers this way! :)
Behind bars again...brings back memories from last year!
CARE CONFERENCE
Tomorrow we are having a care conference among our medical team, developmental specialists and various organizations. We will discuss the current medical and developmental status of Maxwell, financial issues, and plan for the future. I have a lot of confidence in Maxwell's team and look forward to what we come up with to help MIGHTY MAX!!! :)
Sunday, July 09, 2006
TEST RESULTS
And now for the update on the hospital stay...this is a long one, so grab a big cup of java!
Friday was a very interesting day of tests and physical exams for Maxwell. Lots of success, good results and just a little confusion here and there! But overall, really great news! :)
LUNGS
We began with a thorough pulmonary review, and yes indeed, Max still has crappy lungs! However, there is potential for a good amount of change. The lung has the ability to "fix" itself because it grows until approximately age 8. So thankfully each year, Max's lungs will be stronger and more resilient. We had a chest xray performed (never fun for Max) but I did absolutely insist that this time he not be put in the torture device (the one for kiddos who can sit up). I don't like being so difficult with the technicians, but getting him to stay in one of those chairs is literally torture for both Max and me! And then half the time, he is crying and moving so much that the xrays are not able to be read.
The lungs look about the same as they did in December. One side was a little worse the other a little better. It's interesting how I am starting to learn how to "read" xrays (with lots of guidance!!!)...never thought that would be a skill I would be excited about! We were doing the xray to determine pneumonia or not, but I also always like to have the pulmonary doc review his lungs for overall health and changes.
I am pretty darn impressed with Max's pulmonary team. :) Along with several of his other prominent specialities, they have formed a great relationship with us and care so deeply about Maxwell.
When we were in the emergency room, his pulmonary doc came to check him out. And immediately upon listening to him, he knew there was a problem. He said "You are right to be concerned. This is not Maxwell. This is far from his baseline." He had not seen Max for a few months and yet he remembered every single thing about him right away. Wow, that kind of care and level of knowledge about my son brings me such peace and comfort. Thank you Children's Hospital!!!
REFLUX / NISSEN STATUS
So the next test was his Upper GI to test for reflux and the ability of his stomach to adequately release contents. They insert barium into the Gtube and then watch it on a monitor. According to this test, he is not showing reflux or stomach dumping issues. This was quite shocking news to all of us because the doctors and I had all assumed that the Nissen was failing. Earlier that morning, the team and I were already talking about when the surgery could be, complications, length of hospital stay, different options, etc. So needless to say, we were pleased but confused!
Then within a few hours of the test, he vomited twice. No gagging or coughing involved...he just started spitting up his formula through his nose and mouth. So strange! His doctor was perplexed too and thinks we will need to have some more tests next week once he is feeling better. There are two more intrusive and accurate tests that can be performed to determine reflux issues.
I was sooooooooooo thrilled to get the good news from the Upper GI. The thought of Max having a major surgery again is certainly quite scary. But at the same time, I just wanted some answers on WHY he is not tolerating his feeds.
So for now, I am instructed to keep him on constant drip feeds until he is 100% feeling well again. Then at that point, I will slowly increase his hourly volume and give him some time off the pump. If we see an increase in vomiting at that point, then we know there is something wrong the stomach or Nissen. So we'll see!
I have no idea how we are going to manage to keep him attached to this tube all the time. The boy is starting to move around like a crazy man! Can't complain, he is making great progress!!! :) He also LOVES his feet now and is constantly pulling off his oximeter probe. And the oxygen cannula? Forget about it! He always is pulling that out of his nose, chewing on it, or getting body parts stuck with it. Next time he wraps himself up in all three tubes, I'll definitely try and grab a photo! Today I have already untangled him at least ten times. Wild man! But you gotta love the new and improved activity level! :)
NOSE
After a lot of begging and pleading, we were finally able to arrange for the ENT doctor to come and check on Max's nose...and guess what? Both nostrils are open! WOW!!! The one nostril is definitely smaller and more difficult to access. However, the doc's special "tools" enabled him to get a cathether through the previously closed area. We are to keep a close eye on it, but for now...NO SURGERY!!! I was soooooooooooooooooooooooooooooooo relieved and thrilled!!!! I was getting a little nervous he would be coming home with the infamous "straw" in his nose!
HEART
Our final test of the day was an echocardiogram to determine the remaining heart issues. We should receive results next week once the cardiology team reviews the test.
* That about sums up Max's day of tests. They said he was definitely still sick and it was up to me if I felt comfortable with his coming home in this condition. Of course, I said yes! He still is on the increased medications and inhalers and hopefully those will do the trick. Most importantly, he continues to be in a great spirits! Happy dances all around! :)
Friday was a very interesting day of tests and physical exams for Maxwell. Lots of success, good results and just a little confusion here and there! But overall, really great news! :)
LUNGS
We began with a thorough pulmonary review, and yes indeed, Max still has crappy lungs! However, there is potential for a good amount of change. The lung has the ability to "fix" itself because it grows until approximately age 8. So thankfully each year, Max's lungs will be stronger and more resilient. We had a chest xray performed (never fun for Max) but I did absolutely insist that this time he not be put in the torture device (the one for kiddos who can sit up). I don't like being so difficult with the technicians, but getting him to stay in one of those chairs is literally torture for both Max and me! And then half the time, he is crying and moving so much that the xrays are not able to be read.
The lungs look about the same as they did in December. One side was a little worse the other a little better. It's interesting how I am starting to learn how to "read" xrays (with lots of guidance!!!)...never thought that would be a skill I would be excited about! We were doing the xray to determine pneumonia or not, but I also always like to have the pulmonary doc review his lungs for overall health and changes.
I am pretty darn impressed with Max's pulmonary team. :) Along with several of his other prominent specialities, they have formed a great relationship with us and care so deeply about Maxwell.
When we were in the emergency room, his pulmonary doc came to check him out. And immediately upon listening to him, he knew there was a problem. He said "You are right to be concerned. This is not Maxwell. This is far from his baseline." He had not seen Max for a few months and yet he remembered every single thing about him right away. Wow, that kind of care and level of knowledge about my son brings me such peace and comfort. Thank you Children's Hospital!!!
REFLUX / NISSEN STATUS
So the next test was his Upper GI to test for reflux and the ability of his stomach to adequately release contents. They insert barium into the Gtube and then watch it on a monitor. According to this test, he is not showing reflux or stomach dumping issues. This was quite shocking news to all of us because the doctors and I had all assumed that the Nissen was failing. Earlier that morning, the team and I were already talking about when the surgery could be, complications, length of hospital stay, different options, etc. So needless to say, we were pleased but confused!
Then within a few hours of the test, he vomited twice. No gagging or coughing involved...he just started spitting up his formula through his nose and mouth. So strange! His doctor was perplexed too and thinks we will need to have some more tests next week once he is feeling better. There are two more intrusive and accurate tests that can be performed to determine reflux issues.
I was sooooooooooo thrilled to get the good news from the Upper GI. The thought of Max having a major surgery again is certainly quite scary. But at the same time, I just wanted some answers on WHY he is not tolerating his feeds.
So for now, I am instructed to keep him on constant drip feeds until he is 100% feeling well again. Then at that point, I will slowly increase his hourly volume and give him some time off the pump. If we see an increase in vomiting at that point, then we know there is something wrong the stomach or Nissen. So we'll see!
I have no idea how we are going to manage to keep him attached to this tube all the time. The boy is starting to move around like a crazy man! Can't complain, he is making great progress!!! :) He also LOVES his feet now and is constantly pulling off his oximeter probe. And the oxygen cannula? Forget about it! He always is pulling that out of his nose, chewing on it, or getting body parts stuck with it. Next time he wraps himself up in all three tubes, I'll definitely try and grab a photo! Today I have already untangled him at least ten times. Wild man! But you gotta love the new and improved activity level! :)
NOSE
After a lot of begging and pleading, we were finally able to arrange for the ENT doctor to come and check on Max's nose...and guess what? Both nostrils are open! WOW!!! The one nostril is definitely smaller and more difficult to access. However, the doc's special "tools" enabled him to get a cathether through the previously closed area. We are to keep a close eye on it, but for now...NO SURGERY!!! I was soooooooooooooooooooooooooooooooo relieved and thrilled!!!! I was getting a little nervous he would be coming home with the infamous "straw" in his nose!
HEART
Our final test of the day was an echocardiogram to determine the remaining heart issues. We should receive results next week once the cardiology team reviews the test.
* That about sums up Max's day of tests. They said he was definitely still sick and it was up to me if I felt comfortable with his coming home in this condition. Of course, I said yes! He still is on the increased medications and inhalers and hopefully those will do the trick. Most importantly, he continues to be in a great spirits! Happy dances all around! :)
CRAZY BRADYS
Well Mr. Max had quite the interesting evening! He beat his personal record with all new heartrate lows. At one time, I think my own heart stopped when I watched his numbers dropping, dropping, dropping...I quickly shook him and yelled. But at the same time his numbers were already popping back up. He only did the "truly scary" low level once. The others were really low but not scary, because we've seen them before. But let me tell you, I was sooooo happy we had a nurse last night because if not, I definitely would not have slept a wink!
This went on for several hours and was simply confusing. I am going to put a call into the doctor's office, but I didn't find it warranted an ER visit last night. This is what Max "does" from time to time (ok, this was lower than usual!). When I talked with the cardiologist on this issue previously, he said what is most important is that his oxgyen saturation is maintained during the bradycardic episodes and that he is acting "normal" during the daytime. The only change last night though was the level of the new "low" and the fact that he was having a difficult time keeping his O2 sats up. However we think that is more related to his current lung condition, not related to his heart. Ok have I confused everyone enough already???
So the bottom line is that I am not overly worried right now, but I am definitely racking my brain for answers! He is one confusing lil' baby!
This went on for several hours and was simply confusing. I am going to put a call into the doctor's office, but I didn't find it warranted an ER visit last night. This is what Max "does" from time to time (ok, this was lower than usual!). When I talked with the cardiologist on this issue previously, he said what is most important is that his oxgyen saturation is maintained during the bradycardic episodes and that he is acting "normal" during the daytime. The only change last night though was the level of the new "low" and the fact that he was having a difficult time keeping his O2 sats up. However we think that is more related to his current lung condition, not related to his heart. Ok have I confused everyone enough already???
So the bottom line is that I am not overly worried right now, but I am definitely racking my brain for answers! He is one confusing lil' baby!
