Good news on the nose today! It does not appear that the passages have closed any further from yesterday. HOPEFULLY the initial narrowing was just a bit of scar tissue (which is to be expected), and Max will not require any further procedures or surgeries on his nose. They will continue to check it daily to monitor any changes. Please keep praying for Max's nose...so important to his recovery!
His nose is sooo cute without those stents...and wow, the ability to move around without the oxygen mask is wonderful! I told the ENT doc today that if Max's nose would be perfect from now on, he would forever be my best friend! He laughed and said that I would certainly miss my 7 am wake up calls! The ENT team always does early visits....so usually I wake up with their arrival!
Saturday, September 24, 2005
PHOTOS!!!
BATHTIME PHOTOS!
Max and I love bathtime, and we are looking forward to enjoying many fun times ahead in the water...the pool, ocean, lake...fun! Additionally, the OT and I were talking yesterday about how great the water will be for him, because CHARGE kids often have low muscle tone, so we can develop strength and have fun at the same time!
Friday, September 23, 2005
POSSIBLE SURGERY
As of this morning, the doctors are concerned that one of Max's nasal passages is narrowing. This could be nothing...or it could be that the scar tissue is building up and he will need another surgery very soon. I begged the doctor...PLEASE, PLEASE, PLEASE make his nose better, but of course only God can perform miracles. So again I turn to you, my family and friends, to keep sweet Max in your prayers and beg the Lord to watch over our little guy and keep his nose open and healthy and breathing clearly.
Regarding his lungs, there will be another test this weekend to see if the treatments, which he is handling like a champ, are making any change.
Both of these issues are critical to Max's health...and therefore I am on pins and needles right now just waiting and waiting.
On a less important note, today the Occupational Therapist is going to perform a test with Maxwell to determine where he is developmentally. The test is not normally done at this age due to the extended hospital stay (he will definitely be behind because of this), however, I wanted to get an idea so I would know if I should work with him more or the same with the different therapies. Should be interesting and at least a good distraction from the more important issues addressed earlier.
My mom, Suzanne, is coming in town tomorrow...and we are very excited to see her! She was here for the first two months of Max's life and then returned to AZ to get caught up on her life for a few weeks...and now she is returning to help me and Elizabeth for awhile. So excited for her to see Maxwell...he has certainly changed A LOT! And it will certainly be helpful to have her here if Max indeed returns to surgery...it's always a very emotional and scary time.
Regarding his lungs, there will be another test this weekend to see if the treatments, which he is handling like a champ, are making any change.
Both of these issues are critical to Max's health...and therefore I am on pins and needles right now just waiting and waiting.
On a less important note, today the Occupational Therapist is going to perform a test with Maxwell to determine where he is developmentally. The test is not normally done at this age due to the extended hospital stay (he will definitely be behind because of this), however, I wanted to get an idea so I would know if I should work with him more or the same with the different therapies. Should be interesting and at least a good distraction from the more important issues addressed earlier.
My mom, Suzanne, is coming in town tomorrow...and we are very excited to see her! She was here for the first two months of Max's life and then returned to AZ to get caught up on her life for a few weeks...and now she is returning to help me and Elizabeth for awhile. So excited for her to see Maxwell...he has certainly changed A LOT! And it will certainly be helpful to have her here if Max indeed returns to surgery...it's always a very emotional and scary time.
Thursday, September 22, 2005
THREE MONTHS OLD!!!
Today Max is three months old (one month old "corrected age")!
We will try to temporarily forget the frustrating news yesterday and focus on celebrating and enjoying Max's wonderful presence and enormous spirit! He is quite an amazing gift...and he is certainly here to teach us all valuable lessons on faith, patience, love and hope.
Perhaps we will even have a dance or two to commemorate the special day. :) By the way, it was so fun to hear that so many of you said you had a dance with your kids in Max's honor after reading the "dancing" blog entry...so sweet!
Happy Birthday Maxwell Bennett McKinley...you are certainly one LOVED little guy!!! (Isn't his name so incredibly powerful? I love saying it all together.)
And Happy "2 month" Birthday to Max's cousin "Thomas the Tank"!!! You are such a cutie and I love your new adorable noises...besides the bodily function ones! hee hee!!!
We will try to temporarily forget the frustrating news yesterday and focus on celebrating and enjoying Max's wonderful presence and enormous spirit! He is quite an amazing gift...and he is certainly here to teach us all valuable lessons on faith, patience, love and hope.
Perhaps we will even have a dance or two to commemorate the special day. :) By the way, it was so fun to hear that so many of you said you had a dance with your kids in Max's honor after reading the "dancing" blog entry...so sweet!
Happy Birthday Maxwell Bennett McKinley...you are certainly one LOVED little guy!!! (Isn't his name so incredibly powerful? I love saying it all together.)
And Happy "2 month" Birthday to Max's cousin "Thomas the Tank"!!! You are such a cutie and I love your new adorable noises...besides the bodily function ones! hee hee!!!
