Saturday, May 27, 2006
The birthday celebration for the miraculous, beautiful, amazing MIGHTY MAX is on Saturday, June 3rd at my parent's home in Wheeling. If I missed you on the invite list, please accept my apologies and just send me an email (firstname.lastname@example.org) for more info.
On Sunday the 4th, Max and his cousin Tom Tom will be baptized at our family church, Saint Matthew's in Wheeling. Maxwell had an emergency baptism in the hospital but I wanted a more "official" baptism with family surrounding him.
I have been crazy busy doing last minute preparations with medical equipment/prescriptions/formula and making oxygen arrangements, arranging for therapy devices in Wheeling, etc. etc. etc. There is SOOO much to pack for him...I thought I always packed too much for myself, but wow he takes it to an entirely new level of high maintainence!!! :) And of course we have the final preparations for the divorce hearing too. But I try to not think about that too much!
Just a few more days and we are heading east. Should be quite the adventure!!! :)
Friday, May 26, 2006
I definitely wanted to share this joyous moment with someone, so I called Elizabeth and said "PLEASE COME QUICK! You gotta see this!" She ran right over (we live across the park from each other) and enjoyed Max's super happy mood with me! It was great...thanks Eliz!
It was so strange though. I have never seen Max with such energy! After Eliz went home, I took advantage of his great mood and we did lots and lots of therapy. Sometimes he can get really grumpy when you push him and the mood isn't just "right" (like today at PT - sorry Jill!)...but tonight was a PERFECT opportunity. We tried a few new moves and he didn't completely freak out, which trust me is great progress!
Then we sat down together for a few minutes and he completely passed out without even a whimper. Too funny.
Thanks Max for the happy dances AND for the productive therapy time. You are amazing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! :)
Wednesday, May 24, 2006
As far as the heart, there is no clear answer at this point. It is definitely not normal to have such low bradys for such extended periods of time, however he seems to be managing them ok. We did another 24 heart halter monitor yesterday and of course Max had very few bradys during that time period. Lil' bugger!!! Then this morning when he was finally off the halter, he started to brady again. So strange!
Tomorrow we are heading to Children's for several clinics and tests. Cardiology is seeing Max and doing an ECHO on him to check the pressures in his heart. This will help determine the need for long term oxygen and also if Max will require an additional procedure on his heart.
We will start the day with an ultrasound of his kidneys. Last year Max had to be on large doses of Lasix (a heavy duty diuretic) to help his heart function adequately. Unfortunately one of the negatives is possible calcification of the kidneys...sure enough this happened big time with Max. This can cause long term damage to the organ, and kidneys already are commonly impacted in CHARGE...so we definitely don't want to add further issues there. HOPEFULLY the calcification has decreased since he has been off of that diuretic for six months. Not sure what we do if it has not. We also will see the pulmonary team and check in with his nutritionist.
It will be a very long day but I am hoping we get some good answers to our many, many questions!
Notice the nasal prongs on my oxygen cannula? That's my lil' trick. I rub my face and pull them out of my nose...and then I desat and Mommy comes running! hee hee :)
This was taken at the farmer's market (by a fan club member!!!) a few weeks ago. I was feeling pretty good that day so Mom thought it might be fun to get out and about. We were having a major case of cabin fever so some sunshine and fresh air (and fun food for Mommy!) did the trick!
Boy, did I have quite the fan club at the market! I was a celebrity! All these really nice strangers came up to my mom asking, "Is this Mighty Max???" Everyone was so excited to meet me!!! They had read about me in the paper and watched my story on the news...and many have been regularly following the blog. Thanks everyone...great to meet you! :)
Here is my Aunt Elizabeth and my cousin Thomas...lovingly nicknamed "Baby Monster" by his big brother. Tom Tom is big, strong and gets around like crazy! He's quite impressive in my eyes.
Can I sport a hat or what???
This is Kim, my speech pathologist. She is helping me with my hearing and speech. AND we have lots of fun together. She and Mommy make all kinds of crazy sounds to get me to turn my head. It's very funny, but they definitely know what they are doing...because I am starting to show progress! YAY for me!
LOOK AT ME!!! :) I am making great strides with my Bumbo seat!!! I can now sit in it for nearly 20 minutes! Mommy is absolutely thrilled with me!!! It has taken nearly six months of daily work but I finally am learning to sit in this seat. (Without the seat, I have a LONG way to go until I can sit...but hey progress is progress!!!)
Monday, May 22, 2006
Earlier today (around 6 p.m.), Max fell asleep in his swing and begin experiencing bradycardia (low heart rate) and continued that for hours. He dropped down even lower than his usual low, and that certainly caught my attention. His monitor was literally going off for a straight two hours with his heart rate sitting in the 50s. He drops to the 50s sometimes, but this time he actually was sitting on the lower end. I don't like seeing 50/51 for his heart rate. Finally I decided to call our doctor but because it was after hours, I talked to the on call nurse at Children's. After explaining Max's medical history (that's always quite simple - ha ha), I was referred to the on call cardiologist. Unfortunately this is the one cardiologist at Children's that does not know Maxwell. So I explained all of Max's issues relevant to the heart and everything that has happened post surgery (again quite a lengthy list of issues and procedures). She says to head to the ER just to make sure nothing has changed and that this ongoing cold/virus isn't impacting his heart.
I ask that the doctor call ahead so that we don't have to wait in the waiting room (too many germs!!!) and fortunately we were seen immediately. They hooked Max up to an EKG (the 12 leads on his chest) and monitored his rhythm. Everything appeared normal there. But they wanted to see what he is doing when he sleeps, so they put us in a private room and I was to encourage Maxwell to fall asleep. So we snuggled up on the bed together and I think Max was quite confused. He was looking at me, looking all around the room, playing with my hair...anything besides sleeping. Finally my lil' guy decided to doze off but it wasn't "heavy" sleep and he only "brady'd" a few times. After a few hours of this, I asked for us to go home and they agreed. However, as soon as I put him in his crib at home (literally - it happened immediately!!!) he started to brady like crazy and was sitting in the low 50s. Bugger!
I am supposed to talk with the cardiologist tomorrow morning and they are hoping they will have the halter results back from last week. The concern is if there is a blockage that is causing these low drops...or is this "just Maxwell" and all is well for now. Most likely this will be an issue we always will have to watch closely. He simply does not have a normal, healthy heart and it will probably never function as such.
Anyway, as I write this post, his alarm has started to slow down, so I think it is time for me to try and get some sleep...HOPEFULLY! I am so glad I had help here last night...it was sooo wonderful! Getting eight hours of sleep was a complete dream and allowed me to stay focused on Max's issues tonight. Good night!
*Thanks Eliz for joining us at the hospital...definitely made for a more enjoyable visit to have your company! :)