Saturday, July 01, 2006
Max has been vomiting on and off this week, and it has been very confusing. First it seemed like his feeds were just too much because he would vomit after a feed without any coughing. (And his vomiting can be quite an ordeal, because his mouth and nose must be immediately suctioned to avoid aspiration.) So I experimented with various feeding techniques, and small amounts throughout the day and night seemed to work a little better. Being attached to a feeding tube is quite difficult to do when the lil' guy is learning how to roll (yes you read that correctly...Max is now ROLLING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!) His rolling takes quite a lot of effort, but he does it and that is what is most important!!! YAY MAX! See there is the silver lining in all of this!
Anyway, then the coughing and gagging kicked in the last few days and that always seems to result in more vomiting. Then a low grade fever started yesterday, along with general crankiness and major coughing. This continued throughout the night.
So here we are. I try to not get disappointed with all of these episodes but it can be incredibly frustrating. He doesn't seem to go more than a few weeks without getting sick, requiring xrays, blood tests, medications, the works. Quite honestly, it usually is less than a week by the time one passes and the other begins. And each time you can't help but worry is "this" the illness that will land him in the hospital? Is "this" the one that will turn bad?
I know this is life in CHARGE land, but yikes...what these kiddos endure is incredible. They are absolutely the most amazing kids I know. Can you imagine any of us "healthy adults" experiencing the level of pain, medical care, challenges and illnesses that they experience on a daily basis? Brave, determined, unique, and yes a little fragile. But they make up for that with all that courage and cuteness, don't you agree?
I'll keep you posted on the hospital visit. He has A LOT coming up this week, so I am hoping this "bug" leaves quickly! He has a VERY full day at Children's (a gazillion heart/lung tests), special visitors and lots of local appointments.
Thursday, June 29, 2006
I too would rather focus on the good stuff, but in the back of mind I know that there are many, many challenges ahead. I often tease that our theme song should be "We've only just begun..."
Several times a week I learn of another CHARGEr having a difficult time with one thing or another. Well this morning my heart broke on behalf of a wonderful online friend who also has a CHARGEr. Alex is experiencing some serious behavior issues, which are not uncommon to CHARGE kids...but they are quite frightening because there is no real solution. Many families must add yet another specialist (a therapist, psychologist, etc.) and even more medications.
One of the CHARGE moms who posted a comment said that they would take an open heart surgery over behavior issues anyday. (Her daughter has experienced both.) That puts everything in perspective in CHARGE land. Pretty crazy world we have ahead of us...but wonderful nonetheless because these kiddos are absolutely incredible. What irritates me (if you can be "irritated" at a genetic disorder) about CHARGE is that it doesn't seem fair that one disorder includes medical, developmental, AND behavioral issues. Shouldn't only one be included??? I guess that is why CHARGE is listed as such a serious disorder because of how all encompassing it is.
And so the song says..."We've only just begun."
*Please keep Mr. Alex and his amazing momma in your thoughts. They have provided great strength to me through recent months, and I just wish I could do something for her!
Wednesday, June 28, 2006
On a side note, Mr. Maxwell had me a little worried this morning. He has recovered very well from his cold but still is gagging and vomiting more often than usual. He did several times this morning and also felt a little warm, but I think all is well (relatively speaking). I am *hoping* this is not a Nissen/Gtube issue...we definitely don't want to have that surgery done over anytime soon!
Yesterday was quite odd. Maxwell usually takes two one-hour naps in the day, but yesterday he took a four hour AND three hour nap. It was soooo strange! For most moms, that sounds like a dream come true...but I was a little concerned. I kept checking on him...and checking on him...and checking on him again!!! I think he has been soooo busy with development these past few weeks (BIG changes!) that his body is needing time to recover. He is getting so much more active, alert and strong. His occupational therapist yesterday was amazed with his progress! Throughout our session, I had tears in my eyes because I was so proud!!! :)
She had to get a nurse to watch over me, but we were limited on time. So she quickly raced over to the vet, and sure enough, she was busted! Lights and sirens...and nope, she didn't get out of it! I bet she would have if I had been with her! Major bummer. An extra $100 just doesn't fit into our tight budget right now! Mom will have to be more careful next time.
I'm letting Mom off on this one though because she was very anxious to get Barney to the vet. Yesterday she discovered a lump on his back and was quite concerned it would be a cancerous tumor. He hasn't had the best health this year, so it wouldn't be too much of a shock. FORTUNATELY, the vet thinks it may just be a reaction to his recent vaccinations. Yippee! What a relief! Mom and I were very, very worried. She absolutely adores Mr. Barney, and I think I will too someday...that is IF he ever pays any attention to me!!!
Tuesday, June 27, 2006
There was so much love and positive energy...especially with all the children running around and playing. There were tons of kiddos and they enjoyed face painting, water balloons, a monkey pinata, and crafts! :)
I am incredibly grateful to Lori Beyerlin and her amazing trio - Allison, Sarah, and Hannah - who organized this party for Mighty Max! (And Eliz too!) You are soooo amazing! Thank you, thank you, thank you!
The decorations were so fun! In honor of our favorite "funky monkey," we had palm trees and monkeys everywhere...even in the bathroom!
And check out the cake (made by Lori!), how perfect is that??? I about cried when she brought it in...just too cute!
Max enjoyed putting his fingers into the frosting! I even let him taste it, and he definitely gave his approval!
Max's new special buddy, Cameron (who is such an inspiration!), gave the birthday boy a big hug. They have become fast friends!
Max's very favorite nurse from Children's Hospital joined us for the celebration too! Thanks Wakara! We LOVED seeing you! And Max loved eating your fingers!!! :)
Fun, fun, fun!
Max decided to take a nap for the first part of the party...perfect excuse to make a grand entrance later! :)
And I had the wonderful opportunity to meet my online friend, Ang, and her son, Cody! She has become a great fan of Mighty Max's and provided so much support these past months. So great to finally meet you in person! :)
Boy did Max get presents! Thank you so much everyone for your very thoughtful and fun gifts! We are having a great time discovering them all. And Max LOVES all the bags and cards! :) Thank you, thank you, thank you!!!
But I did want to take a quick second and request thoughts and prayers for Max's friend, Evan. He has been having a difficult several days at Children's with respiratory problems. He was transferred back to the PICU over the weekend and is now on the dreaded nose hose "CPAP." Fortunately he is letting the machine help him breathe and not fighting it too much. (Max absolutely despised his time on the hose.) But hopefully this is giving Evan's lung a break from all the labored breathing.
On a personal note, it particularly pains me to see Evan in the hospital because he has tended to be the "stronger" one (b/w him and Max) as far as less serious medical issues. So to see him in the hospital hits close to home and how quickly Max could be in the hospital. At the party this weekend some of us were talking about how unbelievable it is that Max has been able to stay out of the hospital this long. The doctors all thought it would be more of a revolving door relationship! Don't get any ideas from your friend Max...we know how you two tend to mimic each other's events!
So Evan, it's time for your bug to leave your body and for you to leave the hospital! Even though you do look kinda cute as a patient, we like you MUCH better at home playing with your toys! :)
*** Jeremy, is the cafeteria food bringing back memories yet??? Today is "appetizer" day at lunchtime. Always a greasy favorite of mine when Max was having a particularly difficult day.