Sunday, September 18, 2005


Max and I had a really good weekend! He managed to get through both nights without sedatives...way to go Max! :) I slept basically with one eye open and as soon as I heard even a peep or a difference in breathing, I jumped up and either suctioned him or just gave him some good TLC. We think he may medically be doing better and that is why he is more relaxed at night...or perhaps we tricked him out of his routine! Hoping tonight continues this positive trend. Is it strange that I don't find it weird to be half asleep and suctioning my baby's nose and throat at 4 in the morning...and I manage to still do it perfectly? Bizarre how you just do what you need to do, isn't it?

We do several "OT" (occupational therapy) sessions both days. This includes the "non nutritive oral stimulation activities"...basically getting him ok with having things near and in his mouth. We are starting to overcome some of the oral aversion...I think...he likes my finger but isn't too interested in the binky. He definitely enjoys lots of kisses all over his face!

We are also working on increasing his neck strength. He would rather have me lift his head for him...but he seemed to make some efforts today.

I met a really nice woman in the laundry room yesterday and today I spent the afternoon with her and her wonderful daughter. Her daughter was diagnosed with leukemia at age 2 and has been battling it ever since...she is now 13. I had fun going to Bath and Body Works today and buying her a fun assortment of goodies. I also bought Max's primary nurses lots of lotions and perfumes to thank them for their special care. Bribery can't hurt right? Last week I sent the team cookies and brownies...and they were much appreciated!

It is simply amazing all the stories you hear at the hospital. From the young woman with leukemia, to the baby born with a four pound tumor, or the father of a 5 year old with terminal cancer and their family just not giving up....every day I meet another incredible family who is battling the odds and holding on to their faith. Truly amazing.

Max and I have renewed faith and hope that we are not only going to survive, but truly THRIVE! He is such a terrific little man...and I am going to do everything possible (and more so!) to give him EVERYTHING he needs. Like my song goes..."I love Maxwell and Maxwell loves me...(and the rest changes ever day based on what we are doing)" It's a silly song, but we enjoy it! :)


Off to get some dinner...totally missed cafeteria meal time, but I think a peanut butter and jelly should suffice!


rebecca said...

Amy, I can't wipe the smile off my face. My happiness is bubbling over. You are such an amazing person and one of the best mothers I have ever known. Maxwell is so lucky to be blessed with you, and we are so lucky to be blessed with him. Can't wait to read your next entry!


Sara B said...

Yeah! I'm so excited to hear about your weekend! Miss you lots and I can't wait to meet Mr. Max!

Sara B

Drew said...

Amy and Max,

Congratulations on the good weekend. Please keep the good news coming. It must be so exciting to be getting the stents out!

Amy, I am completely confident that you are one of the "amazing stories" being told by the other folks you are meeting at the hospital. You are such a wonderful and devoted mother.

Take care,

tessa said...


tessa said...

Amy! I am so excited to hear all about your great weekend! maxwell sounds like he is doing so great and i am so happy to hear it! take care and keep up all your amazing work and i hope to talk to you or see you very soon!
much love

Nancy F. said...

I'm sure you are just radiant with joy over this good weekend. Both of you deserve some good, happy days. Any hopefully, it won't be very long until the good days out number the "down" days. You are in our prayers always.

Nancy F. (aka: DogLady)

Steph said...

Hey Amy,

I can hear you saying the words you wrote in this entry and it makes my heart so happy for you and Max! All of your hard work and Max's hard work is paying off, and that is so exciting and wonderful. Great to hear the stents are coming out!

We love you guys!

xoxo Steph

Anara said...

I wish you could see the BIG SMILE on my face!! What a wonderful weekend you two had, and it will just keep getting better. Your a natural Mommy and that's why all you do comes so easy to you. How wonderful that he gets to have the stents out!!!! YEA MAX!! Give our little guy and big hug and kiss from auntie Anara XOXOXO
Love you!!!